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Embracing Fearlessness After a Cervical Cancer Diagnosis

Life often takes unexpected turns, and sometimes these twists reveal a sense of fearlessness we never knew we had. For many in the Cervivor community, this unexpected resilience and strength begins with one of the scariest challenges to confront: a cervical cancer diagnosis. The experience forces us to confront our deepest fears – which some of our Cervivors share below – and find the courage that changes our lives forever.

The Diagnosis

Receiving a cervical cancer diagnosis shakes your world. Fear of the unknown, anxiety about treatment, and worries about the future overwhelm your mind. Initially, many of us feel powerless against this invasive disease. The thought of surgery, chemotherapy, and the potential long-term effects are daunting. 

But let Julie Groob, a survivor who volunteers with Cervivor and attended the 2024 Cervical Cancer Summit, explain how the cervical cancer diagnosis was for her:  

“It’s weird to be relieved to hear the words, “You have cancer,” but that was my reaction. After eight years of recurrent cervical dysplasia, finally, the world of cancer support and services was open to me. Those eight years were lonely, but with a cervical cancer diagnosis, I found the Cervivor community as well as cervical cancer patient advocacy and purpose. Cervivor connected me with women on a very similar journey, who embraced me completely. By meeting them in person, I connected with them beyond our shared cancer diagnosis. Cervivor taught me that my voice, my humor, just being me, and sharing my story could change and save lives. Cancer let me in on a little secret, life is precious, so live life fiercely and joyfully, always.” 

Discovering Cervivor, Inc.

Like Julie, other Cervivor community members often find solace in shared experiences and strength in unity, from attending our monthly virtual cervical cancer support group, Creating Connections, to attending live events like the Cervical Cancer Summit, Communities of Color Retreat, and the premiere cervical cancer patient advocacy training program, Cervivor School. (Read about the recent Cervivor School Minneapolis, which marked the 10th year of the unique program.) 

Here’s how Sara Johney, who graduated from the aforementioned Cervivor School, found her way to Cervivor’s cervical cancer support organization: 

“It was early in my cancer journey, just around the time I was diagnosed, when I found Cervivor. As I developed recurrences and challenges, I never knew how much I would come to depend on my Cervivor sisters. The strength and resilience I learned from these women have helped me in the last few years and even today. I know I will not go down without a fight and anything is possible with God, my family, and the Cervivor community.” 

Empowerment Through Community

Through Cervivor, Inc., many in our community members discover that fearlessness is not about the absence of fear but the courage to act in spite of it. By participating in cervical cancer awareness campaigns, advocacy, and support groups, our members often transform their fear into fuel for change.

Gwendolyn Jackson, who was recently given the Erica Frazier Stum Living Life with Cancer Award and is currently going through cervical cancer treatment, shares: 

“I was looking for a support group for cervical cancer and when I did a Google search, Cervivor came up. Since then, Cervivor has taught me that my story matters and the true definition of advocating for myself and others. I am living fearlessly with stage IVB cervical cancer because of my relationship with Cervivor, which connected me to a clinical trial when I needed it most. The organization also taught me that I’m more than a cancer patient and that I have a voice that can change lives, heal others, and prevent this from happening to anyone else. Cervivor has equipped me to be informed, to feel empowered, and to be alive.”

Finally Finding Fearlessness

A cervical cancer diagnosis can shape your story, but – as Gwendolyn pointed out – it doesn’t have to define you. Fearlessness isn’t something achieved overnight; it’s a journey. Embracing a fearless mindset happens through support, education, and collective strength. 

Here are some ways that you can make a difference in your life and others:  

Together, let’s break the silence surrounding cervical cancer and cultivate a community of powerful patients, survivors, and advocates.

Hi, I’m Sara.

It is with great honor – and perhaps a little too much enthusiasm – that I introduce myself as the new Communications Director for Cervivor, Inc. [Insert air horn sound effect!]

Like all Cervivors, my journey here is deeply personal. I lost one of my best friends from high school to cervical cancer when she was just 28 years old, while we were both living in New York City. Over the seven months following her late-stage cancer diagnosis, I watched her die before my eyes, powerless to do anything but love and support her – and eventually share her story with the world (more on that in a bit).

Heather, Mindy, and Sara Lyle-Ingersoll stand together at their senior prom in the 1990s. Sara, on the right, is wearing a black gown with a large white bow on the shoulder. Mindy is in the center wearing a black dress with gold accents, and Heather is on the left in a blue dress. They pose in front of a backdrop featuring a crescent moon, stars, and decorative columns.
Heather (in blue), our friend Mindy, and I were so totally ’90s at our senior prom.
Heather Martin, who later passed away from cervical cancer in her twenties, shares a joyful moment with her best friend Sara Lyle-Ingersoll, now Communications Director for Cervivor, Inc. In this candid photo from their senior year graduation event, Heather, wearing a white t-shirt and denim shorts, laughs with Sara, who is playfully leaning on her shoulder, dressed in a sleeveless striped shirt and shorts. They are surrounded by other attendees in a festive atmosphere.
Heather (on left) was a bright light.

This heartbreaking experience, and the fire it ignited in me to spread the word about how preventable cervical cancer is, and how senseless it is for women of any age to die from it, is just one of many reasons I am thrilled to be working with the Cervivor community and its fearless leader, Founder and Chief Visionary Tamika Felder.

But let me take you back to when I first met Tamika. It was 2006, and I was a senior editor at Jane Magazine, interviewing her for a feature story (more on that in a bit, too). Even then, she was a rising force in cervical cancer advocacy, speaking at major events and addressing Congress. Her new nonprofit, then called Tamika & Friends, Inc., was organizing its first fundraising walk for cervical cancer awareness in Washington, D.C., that May.

Sara Lyle-Ingersoll, wearing an "I Hate Tumors" shirt, stands with a man and Tamika Felder at a cervical cancer awareness event in 2009. Sara is smiling and holding up her wrist, showcasing a yellow bracelet, while Tamika, dressed in a red cardigan, stands on the right, also smiling.
Tamika traveled from D.C. to New York for a cervical cancer awareness event we organized in Heather’s memory in 2009. Tamika hosted an HPV-themed trivia game and brought her general sense of positivity and purpose.

Although we hadn’t met before our phone conversation – she was in Maryland; I was in New York – we shared the same mission: to ensure that no one else would suffer or die from cervical cancer or be kept silent because of its stigma. Even though Heather was already gone by then, I knew she and Tamika would have been fast friends. Their zest for life was infectious.

Turning Pain into Power

After Heather told me about her diagnosis – over beers at a Manhattan bar, as you do in your twenties – I discussed with my editor at Jane that sharing Heather’s story might encourage other young women to get their Pap tests more regularly, since Heather’s late diagnosis was partly due to missed screenings. Like too many people, she was working multiple jobs but didn’t have health insurance.

There was also encouraging talk of a soon-to-be-FDA-approved HPV vaccine, which made the potential article especially timely. Additionally, while the first HPV test was introduced in the early 2000s, it still wasn’t widely used or covered by insurance. To my mind, this made it crucial to educate Jane’s mostly twenty- and thirty-something readers about these powerful tools for cervical cancer prevention. I just didn’t realize that Heather’s story would end the way it did when I started it.

Heather passed away in December 2005, six months before the first HPV vaccine was approved. Now, I watch HPV vaccine commercials on TV with my 9-year-old son, who asks questions about what it is and who it’s for. I tell him about Heather, Tamika, and how the vaccine can prevent cervical cancer. It’s amazing how far this movement has come!

Sara Lyle-Ingersoll smiles brightly as she poses with her 9-year-old son, Loch, outdoors in Denver during the winter. They are bundled up in winter jackets, with Sara wearing a purple puffer coat and Loch in a red and black jacket. The sky is clear and blue, and the mountains are visible in the background.
My youngest is the age at which the HPV vaccine is first recommended.

Becoming an Unintentional Advocate

When Heather’s story, “I Hate Tumors,” was eventually published in Jane in March 2006, it struck a nerve. Reader mail poured in; our online message boards were active. The article was syndicated in the UK edition of Glamour and shared widely. One woman wrote, “That article saved my life! After I read it, I made an appointment with my gyno and found out that I had HPV and two precancerous lesions on my cervix. I’m fine now, but what if I had waited?” The feature went on to win a Front Page Award for Science, Medicine, and Health from the Newswomen’s Club of New York, which was gratifying, even though I wish I’d never had to write it in the first place.

While I didn’t consider myself an advocate back then, I seized the moment to speak about the need for cervical cancer awareness on as many TV and radio shows and in as many publications and places as possible. When I interviewed Tamika for the aforementioned feature story, “I Still Hate Tumors,” a follow-up article that came out in Jane in March 2007, she said she had seen a segment that Heather’s little sister and I did on The Tyra Banks Show. She told me it impressed her “to see people talking about cervical cancer correctly.”

Two-page magazine spread from Jane Magazine featuring an article titled "I Hate Tumors," written by Sara Lyle about her friend Heather Lyn Martin's battle with cervical cancer. The left page has text, while the right page includes a photo of Heather (right) and Sara as college freshmen.
This is the opening spread of the article I wrote in Jane Magazine in 2006 about my friend Heather’s battle with cervical cancer. I made her a T-shirt that said “I hate tumors” while she was in the hospital, inspiring the story’s title. The photo on the right-hand page is of Heather and me during our college years in Florida.
The first spread of a follow-up story in Jane magazine. On the right page, a collage of photos includes Heather in the top left, wearing her 'I Hate Tumors' shirt. Below her, Heather's sister Donna displays a fresh tattoo featuring one of Heather's favorite quotes. Tamika is also pictured at a Livestrong event.
This is the first spread of the follow-up story, “I Still Hate Tumors,” published in Jane a year later. On the right page, Heather is in the top left, wearing her “I hate tumors” shirt. That’s Tamika in yellow at a Livestrong event before we first spoke.

In 2008, I shared Heather’s story with hundreds of attendees at the Global Summit of Women in Beijing, which was nerve-wracking but empowering. (Tamika helped me prepare for the speech!) Over time, I participated in several of her organization’s walks in D.C. and New York. Tamika invited me to attend the very first Cervivor School in New York in 2014, where I earned an honorary certificate since I’m not a cervical cancer survivor. (Hats off to all of the Cervivor School graduates who have come up since then!)

Tamika Felder stands with the first group of Cervivor School graduates, including Sara Lyle-Ingersoll, an honorary student whose best friend died from cervical cancer. The group is gathered in New York City for the inaugural Cervivor School in 2014.
A diverse group of individuals, all attendees of the 2024 Cervivor School, pose for a group photo in a well-lit room decorated with teal and white balloons. The group consists of women wearing Cervivor-themed shirts, casual and professional attire, with a warm, supportive atmosphere. Some attendees are seated while others stand behind them.
I had the honor of attending both the first Cervivor School a decade ago (top photo) as well as the most recent one in Minneapolis.

She even used my Brooklyn apartment as a staging area for the first series of CervivorTV episodes, featuring different people impacted by cervical cancer, including me (that’s the video below). Since then, Tamika and I have stayed in touch through marriages, my living abroad, and both becoming mothers. I have always been cheering for her – and the Cervivor mission and community – from the sidelines.

What I Hope to Bring to Cervivor

Now, after all the growth and impact the organization has achieved, coming back into the Cervivor world as its Communications Director feels less like a job and more like a calling.

A little about my professional background: After Jane, I held leadership roles at magazines you may have heard of like Woman’s Day and Good Housekeeping. I also lived in Asia for seven years, where I was the Editor-in-Chief of The Finder, a popular publication for foreigners living in Singapore. (Tamika even wrote a story for The Finder during Cervical Cancer Awareness Month one year!) For the past year-plus, I’ve worked independently, contributing to niche publications and global media outlets and, yes, collaborating with Tamika behind the scenes.

My goal at Cervivor? To continue to infuse heart and mind into all our communications, delivering a message of hope and solidarity that reflects Cervivor’s commitment to the ultimate mission: to #EndCervicalCancer. I aim to help us achieve the ambitious goals set by Tamika and the organization’s leadership, powered by the dedication of our Cervivor Ambassadors, community members, and supporters.

A photo of Sara Lyle-Ingersoll outdoors with sunglasses on, smiling, and wearing a Pap Rally & Run T-shirt. She attended the event in New York City in 2014.
Me at a Pap Rally & Run in New York in 2014, the last one I attended before moving abroad.
Sara Lyle-Ingersoll, now Cervivor's Communications Director, at one of the non-profit’s early awareness and fundraising events in Washington, D.C., sharing Heather’s story with a powerful message on her T-shirt.
Tamika invited me to an early Pap Rally & Run, where I shared Heather’s story and wore our T-shirt.

Heather’s legacy – and that of other women who didn’t make it – lives on in our work. Together, we will continue fighting for a future where no woman has to lose the battle to cervical cancer.

A collage of names of women who have died from cervical cancer, accompanied by the hashtag #EndCervicalCancer.
Heather and I didn’t know Tamika when she was starting Cervivor, and Heather passed away before they could meet. Too many continue to be lost and every loss hurts.

Thank you for welcoming me back to the Cervivor family. I look forward to working alongside each of you as we advocate, educate, and empower.

Let’s kick this cancer’s ass!

P.S. If you want to connect with me on LinkedIn or contact me directly at [email protected], I would love that. 

With gratitude,


Sara Lyle-Ingersoll
Cervivor, Inc.
Communications Director
Read My Story Here

October: A Time of Reflection, Resilience, and Roaring Against Cancer

Here in Indiana, October marks a turning point. The green of summer gives way to a stunning tapestry of gold, yellow, and orange. The mornings and evenings greet us with a chill in the air, hinting at the winter to come. For many, it’s simply a season of transition. But for me, October carries much deeper significance.

This month is an anniversary—one that marks battles I never expected to fight. It was in October, 10 years ago, that I was diagnosed with cervical cancer. Then, just two years later, in the same month, I heard those dreaded words again: breast cancer. So, for me, October is a time of scanxiety—anxiety over upcoming tests, mixed with moments of reflection that can sometimes feel like reliving trauma. But it’s also a time of gratitude, because I’m still here, standing strong.

October is also the month when pink ribbons seem to bloom everywhere, spreading messages of hope for breast cancer warriors, survivors, and thrivers. And while I appreciate the awareness, I’m tired—tired of cancer’s relentless presence in my life. It wasn’t just my diagnosis. My mother was diagnosed with breast cancer. Then my aunt. Then me. My cousin. And now, just recently, my sister. It’s as if cancer has drawn a line through generations of my family, and the next in line could be my daughter.

My beautiful family including my sister and her family plus our parents.

The only silver lining? We’re catching it earlier. My mother and aunt were diagnosed with stage 3, while my cousin, sister, and I were caught at stage 0 or stage 1. Early detection saves lives, but that doesn’t lessen the emotional toll.

Here’s the reality: 1 in 8 women reading this will face breast cancer in their lifetime. Think about that. According to Komen.org, the two most common risk factors are simply being born female and getting older. It’s staggering, and it’s unacceptable. Breast cancer and cervical cancer share more in common than we often acknowledge, and both must be stopped.

When I got my breast cancer diagnosis, I was in shock. I had just finished treatment for stage 3B cervical cancer. I couldn’t comprehend how cancer had returned, but there it was—another battle, another round of surgery, chemotherapy, and radiation. And now, watching my sister go through it? I refuse to let my daughter face the same fate without a fight.

So yes, I’m wearing my pink this October. I’m mad as hell, and I’m making sure legislators, researchers, and anyone who will listen hears my voice. Come January, I’ll be wearing teal and white, advocating just as fiercely for cervical cancer awareness.

Mom hugging her sister, Beverly who lost her 10 year journey with breast cancer in 2018.
Me standing strong and advocating for cancer policy.

We cannot stop talking about breast and cervical cancer. We must continue fighting for better treatments, vaccines, healthcare equality, and cures. We are the warriors, the survivors, and the thrivers. And in the words of Helen Reddy: “I am woman, hear me roar!”

Laura Lemons (she/her/hers) is a 2019 alumni of Cervivor School and a Cervivor Ambassador. She is a volunteer for the American Cancer Society Cancer Action Network (ACS CAN) for the state of Indiana and was an advocate for the Lymphedema Treatment Act (LTA) which passed in 2023. Her journey as an advocate for equitable healthcare began after witnessing disparities while receiving treatments for cervical and breast cancer. Laura is particularly passionate about addressing the stigma surrounding gynecological cancers. A proud central Indiana native, Laura lives with her husband, Jim, and their dogs, Bella and Sylvie. She is also a mother to two adult daughters, Allison and Melissa.

Breaking the Silence: Cervical Cancer Awareness in the Hispanic Community

As Hispanic Heritage Month ends, I find myself reflecting not just on our vibrant culture and history but also on an issue that deeply affects our community—cervical cancer. This preventable disease continues to claim the lives of too many Latinas, both in the United States and across Latin America. As a survivor, advocate, and member of the Cervivor community, this is personal to me, and it’s personal to so many of us.

Cervivor Español members during the 2024 Communities of Color Cervivor Care’s community outreach day

Cervical cancer is one of the few cancers that can be prevented through vaccines and regular screenings like Pap tests and HPV tests. Yet, Hispanic women in the U.S. face alarming disparities when it comes to this disease. We are diagnosed with cervical cancer at higher rates than non-Hispanic women and are more likely to die from it. The reasons for these inequities are complex, but they are deeply rooted in unequal access to healthcare, language barriers, lack of information, and cultural stigmas.

The Disparities We Face

Did you know that Hispanic women in the U.S. are 40% more likely to be diagnosed with cervical cancer than non-Hispanic white women? And tragically, we are 26% more likely to die from it. This isn’t because the disease is more aggressive in our community—it’s because many of us aren’t getting the preventive care we need. Whether it’s due to lack of insurance, language barriers, or even the stigma surrounding gynecological health, too many Latinas are falling through the cracks.

Gilma Pereda, a fellow Cervivor Ambassador, puts it perfectly: “Cervical cancer affects many Latinxs in the U.S. This illness is pretty much preventable with vaccination and regular screenings. Still, many people don’t have enough information to care for their health properly.” 

Gilma Pereda
Patti Murillo-Casa

Patti Murrillo-Casa, another Cervivor Ambassador, emphasizes the importance of advocacy: “It gives me the opportunity to give a voice to the voiceless, especially those who are underrepresented.” 

This lack of information and access to care is something we must change—not just for ourselves, but for future generations. Our community faces unique challenges, and many of us don’t feel comfortable talking about things like HPV or cervical cancer. But these conversations are crucial if we want to save lives. Our mission is clear: we need to bring education and awareness to every corner of our community, in every language, and through every platform.

The Power of Prevention

What makes this so heartbreaking is that cervical cancer is largely preventable. The HPV vaccine can protect against the virus that causes cervical cancer, and regular Pap tests and HPV tests can catch abnormal cells before they become cancerous. Yet, many women in our community don’t know this. The lack of education and language barriers are major issues that prevent the information from getting out, compounded by the stigma in our community.

Yvette Torres, shares: “I advocate because I’m still here!! After being diagnosed 11 years ago, I want to help end cervical cancer and educate others by sharing my story.” 

Yvette Torres
Dulcely Tavarez

Dulcely Tavarez brings a different perspective to this: “I promote cervical cancer prevention to help ensure that other women can maintain their chances of motherhood.” 

This passion and determination reflect the heart of our advocacy. We are survivors, and we share our stories because we don’t want anyone else to feel alone on this journey. For many women, cervical cancer doesn’t just threaten their lives—it can also take away their ability to have children. These words remind us of what’s at stake.

Ending the Stigma

One of the biggest barriers we face in the Hispanic community is the stigma around cervical cancer and HPV. Many of us grew up in households where talking about sexual health was taboo, and for some, the idea of getting an HPV vaccine or a Pap test feels uncomfortable or even shameful. But here’s the truth: HPV is incredibly common, and getting tested or vaccinated isn’t something to be ashamed of—it’s a form of self-care, a way to protect yourself and your loved ones.

Karla Chavez

I’ve experienced this firsthand. As a survivor, I’ve seen the way stigma and fear can prevent women from getting the care they need. But I’ve also seen the power of community, of sharing our stories and breaking the silence. That’s why I advocate: because I don’t want my story to repeat itself in others. I don’t want anyone to feel alone.

A Call to Action

So, what can we do? First and foremost, if you have a cervix, make sure you’re getting your regular cervical cancer screenings. These screenings can literally save your life. The HPV vaccine is safe, effective, and a powerful tool in preventing cervical cancer. Talk to your doctor about getting vaccinated.

For healthcare providers, we need you to help break down the barriers that prevent our community from accessing care. Provide information in Spanish, offer culturally sensitive care, and work to make sure that every woman—regardless of her background—feels safe and empowered to take control of her health.

And for everyone else, let’s end the stigma. Talk about cervical cancer. Talk about HPV. Share your story or information with your friends, your family, and your community. The more we normalize these conversations, the more lives we can save.

KARLA CHÁVEZ, a civil engineer and amigurumi enthusiast from Honduras, is a seven-year cervical and thyroid cancer survivor and proud ostomate. As a Cervivor Ambassador and co-lead of the Cervivor Español community, Karla is dedicated to making a difference for women both in her country and globally. She was honored with the 2020 Brittany Wagner Social Media Advocacy Award and was named a Cervivor Champion in 2022. Karla represents Cervivor, Inc. on the World Health Organization (WHO)’s Advisory Panel for Living Recommendations and Systematic Reviews on Screening and Treatment to Prevent Cervical Cancer.

Rompiendo el Silencio: Concienciación sobre el Cáncer Cervical en la Comunidad Hispana

Al finalizar el Mes de la Herencia Hispana, me encuentro reflexionando no solo sobre nuestra vibrante cultura e historia, sino también sobre un tema que afecta profundamente a nuestra comunidad: el cáncer cervical. Esta enfermedad, que es prevenible, sigue cobrando la vida de demasiadas latinas, tanto en los Estados Unidos como en América Latina. Como sobreviviente, defensora y miembro de la comunidad Cervivor, esto es algo muy personal para mí, y también lo es para muchos de nosotros.

Cervivor Español

El cáncer cervical es uno de los pocos cánceres que se pueden prevenir con vacunas y pruebas regulares, como el Papanicolaou y las pruebas de VPH. Sin embargo, las mujeres hispanas en los Estados Unidos enfrentan disparidades alarmantes en relación con esta enfermedad. Nos diagnostican con cáncer cervical a tasas más altas que a las mujeres no hispanas, y es más probable que muramos a causa de él. Las razones de esta falta de equidad son complejas, pero están profundamente arraigadas en el acceso desigual a la atención y seguro médico, las barreras del idioma, la falta de información y los estigmas culturales.

Las Disparidades que Enfrentamos

¿Sabías que las mujeres hispanas en los EE. UU. tienen un 40% más de probabilidades de ser diagnosticadas con cáncer cervical que las mujeres blancas no hispanas? Y, trágicamente, tenemos un 26% más de probabilidades de morir a causa de esta enfermedad. Esto no se debe a que el cáncer sea más agresivo en nuestra comunidad, sino porque muchas de nosotras no estamos recibiendo la atención preventiva que necesitamos. Ya sea por las razones expresadas anteriormente, demasiadas latinas se están quedando sin la atención que merecen.

Gilma Pereda lo expresa perfectamente: “El cáncer cervical afecta a muchas personas latinas en los EE. UU. Esta enfermedad es prácticamente prevenible con vacunación y exámenes regulares. Aun así, muchas personas no tienen suficiente información para cuidar de su salud adecuadamente.” 

Gilma Pereda
Patti Murillo-Casa

Patti Murillo-Casa enfatiza la importancia de la defensa: “Me da la oportunidad de dar voz a quienes no la tienen, especialmente a los que están subrepresentados.” 

Esta falta de información y acceso a la atención es algo que debemos cambiar, no solo por nosotras, sino también por las futuras generaciones. Nuestra comunidad enfrenta desafíos únicos, y muchos de nosotros no nos sentimos cómodos hablando de temas como el VPH o el cáncer cervical. Pero estas conversaciones son cruciales si queremos salvar vidas. Nuestra misión es clara: necesitamos llevar educación y conciencia a cada rincón de nuestra comunidad, en cada idioma y a través de todas las plataformas.

El Poder de la Prevención

Lo que hace que todo esto sea tan desgarrador es que el cáncer cervical es en gran medida prevenible. La vacuna contra el VPH puede proteger contra el virus que causa el cáncer cervical, y las pruebas regulares de Papanicolaou y VPH pueden detectar células anormales antes de que se vuelvan cancerosas. Aun así, muchas mujeres en nuestra comunidad no lo saben. La falta de educación y las barreras del idioma son algunos de los principales problemas para difundir la información, sumado al estigma en nuestra comunidad.

Yvette Torres comparte: “¡Yo abogo por que aún estoy aquí! Después de ser diagnosticada hace 11 años, quiero ayudar a acabar con el cáncer cervical y educar a otros compartiendo mi historia.”.

Yvette Torres
Dulcely Tavarez

Dulcely Tavarez aporta una perspectiva diferente: “Promuevo la prevención del cáncer cervical para ayudar a garantizar que otras mujeres puedan mantener sus posibilidades de ser madres.” 

Esta pasión y determinación reflejan el corazón de nuestra misión. Somos sobrevivientes y compartimos nuestras historias porque no queremos que nadie más se sienta solo en este camino. Para muchas mujeres, el cáncer cervical no solo amenaza sus vidas, sino que también puede quitarles la posibilidad de tener hijos. Estas palabras nos recuerdan lo que está en juego.

Rompiendo el Estigma

Uno de los mayores obstáculos que enfrentamos en la comunidad hispana es el estigma que rodea al cáncer cervical y al VPH. Muchos crecimos en hogares donde hablar sobre la salud sexual era un tema tabú, y para algunos, la idea de recibir la vacuna contra el VPH o hacerse un Papanicolaou se siente incómoda o incluso vergonzosa. Pero aquí está la verdad: el VPH es increíblemente común, y hacerse la prueba o vacunarse no es algo de lo que avergonzarse, es una forma de autocuidado, una manera de protegerte a ti misma y a tus seres queridos.

Karla Chavez

Lo he experimentado de primera mano. Como sobreviviente, he visto cómo el estigma y el miedo pueden impedir que las mujeres reciban la atención que necesitan. Pero también he visto el poder de la comunidad, de compartir nuestras historias y romper el silencio. Por eso abogo: porque no quiero que mi historia se repita en otras personas. No quiero que nadie se sienta solo.

Un Llamado a la Acción

Entonces, ¿qué podemos hacer? Primero, ante todo, si tienes cuello uterino, asegúrate de hacerte tus exámenes regulares de Papanicolaou y pruebas de VPH. Estos exámenes pueden ayudar a salvarte la vida. 

La vacuna contra el VPH es segura, eficaz y una herramienta poderosa para prevenir el cáncer cervical. Habla con tu médico sobre vacunarte.

Para los proveedores de atención médica, necesitamos que nos ayuden a eliminar las barreras que impiden que nuestra comunidad acceda a la atención. Ofrezcan información en español, brinden atención culturalmente sensible y trabajen para asegurarse de que cada mujer, independientemente de su origen, se sienta segura y empoderada para tomar el control de su salud.

Y para todos los demás, pongamos fin al estigma. Hablemos sobre el cáncer cervical. Hablemos sobre el VPH. Comparte tu historia o información con tus amigos, tu familia y tu comunidad. Cuanto más normalicemos estas conversaciones, más vidas podremos salvar.

Karla Chavez es un ingeniero civil y entusiasta del amigurumi hondureña, es una sobreviviente de 7 años de cáncer de tiroides y cervicouterino además de una orgullosa ostomizada. Como Embajadora de Cervivor y colíder de la comunidad de Cervivor Español, Karla esta dedicada en hacer la diferencia para las mujeres en su país como a nivel global. Fue honrada con el premio 2020 Brittany Wagner Social Media Advocacy Award y fue nombrada Cervivor Champion en 2022. Karla representa a Cervivor, Inc en el Advisory Panel for Living Recommendations and Systematic Reviews on Screening and Treatment to Prevent Cervical Cancer (Panel Asesor de Recomendaciones para la Vida y Revisiones Sistemáticas sobre la Detección y Tratamiento para Prevenir el Cáncer Cervical) de la Organización Mundial de la Salud (OMS)

Cervivor School 2024: Our 10th Year of Patient Advocate Training Success

Marking the 10th anniversary of the first Cervivor School in New York City in 2014, this year’s annual patient advocate training program was a testament to Cervivor’s commitment to empowering patients and survivors to have a voice in their own health. It also solidified Cervivor School’s reputation as a top-tier program that has mobilized advocates worldwide.

The cause colors’ teal and white were on full display throughout the three-day event held in Minneapolis from September 12 to 14. More than 45 attendees – including Cervivor Ambassadors, valued industry sponsors, distinguished speakers, and, of course, the Cervivor School class of 2024 – dyed their hair, painted their nails, and coordinated their outfits to demonstrate their loud-and-proud dedication to Cervivor’s mission: ending cervical cancer through patient advocacy now.

Founder and Chief Visionary, Tamika Felder welcomes attendees to Cervivor School.
Kat Gentner Shaw provides graphic illustrations for class.

By the end, this year’s school was deemed a complete success, with attendees creating meaningful connections and gaining an extensive education – or a refresher – on the latest initiatives and information needed to make the most impact with our advocacy work. This continued success is due to the tireless dedication of Founder and Chief Visionary Tamika Felder, whose unwavering commitment has driven both the program’s impact and longevity. 

Here’s what happened at Cervivor School 2024.

Cervivor School Officially Opens

On Thursday, the official Welcome Reception began at the downtown W Minneapolis – The Foshay, where the weekend’s patient advocate training activities took place. Attendees, dressed to impress, mingled over food and drinks and were welcomed by Cervivor’s founder Tamika, a 23-year cervical cancer survivor herself.

Kimbery and Linda snap a selfie at the welcome reception.
Members of Cervivor Español mingle at the welcome reception.

The following morning, Tamika kicked things off with a powerful presentation about her “why” – the driving force behind her patient advocacy and the reason she founded Cervivor almost 20 years ago. She cited a quote from Dr. Heather Palmer that resonated deeply with the group, garnering many knowing nods: “Cancer is a gift wrapped in barbed wire.”

Mallory Erickson presents on fundraising.
Roshanda Pratt teaches attendees powerful media tips.

Among the day’s speakers: 

  • Mallory Erickson, fundraising expert and host of the “What the Fundraising” podcast (featuring Tamika in an early episode!), led a session introduced by Cervivor Ambassador Karen North, who shared some of her fundraising successes including a creative and profitable drag bingo event she organized. 
  • Roshanda Pratt, acclaimed motivational speaker, book author, and media maven of “The Ro Show Live,” followed with a hilarious and insightful presentation on strategic storytelling. She highlighted why sharing our survivor stories is vital: It connects us, prompts action, and provides context. 
  • Members of Team Cervivor were interspersed throughout the day including Community Liaison Morgan Newman, who thoroughly unpacked Cervivor’s mission and patient advocacy approach, and Lead Cervivor Ambassador Carol Lacey, who moderated a panel of Cervivor Ambassadors – Lindsay Gullatte-Lee, Christy Chambers, and Claudia Pérez-Favela.

Day 2’s official programming concluded with an open discussion, allowing attendees to reflect on the emotional journey of survivorship.

Diving Into the Data

The final day of the intensive patient advocate training program focused on learning about ongoing initiatives from pharmaceutical companies, researchers, the federal government, as well as legislative efforts. The goal? Connect the Cervivor School attendees to the broader global advocacy work that still lies ahead.

Dr. Allison Garda gives attendees the CervicalCancer 101.
Nikki Hayes encourages attendees to continue advocacy with health equity at the forefront.

Among the day’s speakers: 

Additionally, Cervivor community members participated in thought-provoking panels, including one moderated by our DEI chief Kimberly Williams with Karla Chávez and Claudia Pérez-Favela, aimed at dismantling the damaging stigma that prevents too many people from getting the care and support they deserve. Cervivor Ambassadors Tiera Wade, Emily Hoffman, and Anne Zajic also shared how they’ve harnessed their unique strengths and perspectives to advocate effectively through Cervivor.

Karla Chavez, Shelly Dusic, and Kimberly Williams discuss Stigma Elimination in cervical cancer.
Tiera Wade, Anne Zajic, and Emily Hoffman share their insights as Cervivor Ambassadors.

Rewarding Cervivor’s Outstanding Advocates

Cervivor School concluded with a momentous graduation ceremony, followed by a special recognition ceremony, where five outstanding individuals were honored for their exceptional dedication to Cervivor’s mission to end cervical cancer. Our founder Tamika proudly presented these remarkable individuals with awards, acknowledging their tireless efforts in spreading awareness, supporting survivors, and advancing the Cervivor mission. (Read more about the patient advocacy award winners.) This milestone marks the beginning of a new chapter for these empowered advocates, making a lasting impact in their communities. 

Thank You Again to Our Sponsors, Speakers, and Supporters

This year’s Cervivor School was made possible by the generous support of Hologic, which provided beautiful and useful goodie bags for all attendees, as well as our sponsors Pfizer, Genmab, Genentech, BD, and Roche. We also owe a heartfelt thank you to the speakers who dedicated their time and expertise throughout the weekend.

The 2024 Cervivor School Graduates, Mentors, and Cervivor Team

We’d also like to extend our heartfelt gratitude to the generous companies and individuals who helped make Cervivor School 2024 an empowering experience for our attendees. Special thanks to The Business Women’s Circle (BWC), led by Lani Basa, for cultivating a supportive community that fuels growth and collaboration, as well as Heather Bantle, Executive & Transitions Coach, for her expertise in guiding individuals through life’s challenges. Additionally, we thank WAY the Label for their sustainable accessories, and KickIt Pajamas for providing their cozy, functional, and stylish KickIt socks that bring warmth and comfort to cancer patients. 

Want to Attend Cervivor School in the Future? 

To secure your seat at one of Cervivor’s future patient advocate training programs, we encourage you to commit to cervical cancer patient advocacy and expanding the Cervivor Footprint. Visit our Cervivor School page to sign up for updates, or subscribe to our newsletter by scrolling to the bottom of this page – and be the first to know about our important initiatives!

Meet Cervivor’s Newest Patient Advocacy Award Winners

At the recent Cervivor School 2024 – celebrating its 10th year as a one-of-a-kind patient advocate training program – the following five Cervivor community members were honored with patient advocacy awards, recognizing their leadership and commitment to the urgent cause to end cervical cancer.

Read on to hear what they had to say about receiving these unique patient advocacy awards — some of which honor the legacy of Cervivor community members who are no longer with us — and why our Founder and Chief Visionary Tamika Felder believes they are so deserving.

Cervivor Champion Award – Lindsay Gullatte-Lee


Why She Won: “Lindsay checks all the boxes of a Cervivor Champion,” says Tamika about this coveted patient advocacy award. “She’s great at sharing the patient experience, fundraising, and much more. She understands the importance of closing health inequalities and has used her survivorship to help make that happen.”

What She Says: “The reason I do this is so no one else suffers this disease alone. Everyone should have the facts about cervical cancer prevention and it’s important that our voices as patients are heard. I was completely shocked to win! I felt seen, heard, supported, and loved. I’m still healing but forever grateful to the Cervivor community for all its support. I found my people, and I’m just happy to give back a little of everything they’ve given me.”

Brittany Wagner Social Media Advocacy Award – Christy Basa Chambers


Why She Won: “Christy is so deserving of this award because she shows up and shares her vulnerability – the good, the not-so-good, and everything in between,” says Tamika about Christy, whose personal hashtag is #choosinghopedaily. “More importantly, she provides crucial information to encourage people to get screened and vaccinated, and we know that visibility is key to our cause. Christy truly understands what community means and spreads a message of hope across all social media platforms and in person.” 

What She Says: “When I was first diagnosed, I felt very alone. It would have been easy to lose hope, but life with and after Stage 4 cancer is possible! I have made it my mission to foster hope and joy in others who are struggling. If my online content can encourage someone to visit the Cervivor website, get vaccinated, schedule a screening, or learn more about HPV and cervical cancer, then I know I’ve made an impact.”

Erica Frazier Stum Living Life with Cancer Award – Gwendolyn “Gwen” Jackson


Why She Won: “No one is more deserving than Gwen, who is helping others while in the midst of fighting for her life,” says Tamika about this award named after an inspiring late member of the Cervivor community and honors a particularly passionate patient advocate who is thriving despite battling cancer.

What She Says: “This award means so much to me because of Erica Frazier Strum’s legacy,” says Gwen, who was unable to walk up to receive the patient advocacy award due to pain from her treatment, prompting a standing ovation from the Cervivor School attendees. “It inspires me to continue striving for excellence and contributing to the cause in her memory. I believe that individuals never pass if their names are still spoken in rooms. I will make sure her name is spoken in every room I enter.”

Cervivor Spark Award – Tiera Wade


Why She Won: “Tiera has shown incredible dedication and passion toward Cervivor’s mission to end cervical cancer,” affirms Tamika about this motivated and motivational patient advocate “Her commitment shines through in everything she does: from volunteering her time to support our organization, to enthusiastically sharing vital information about cervical cancer within her community.”

What She Says: “To know that cervical cancer is preventable with proper screening drives me to empower others to prioritize their health – because they are worth it. This award was the God-sent confirmation that there is still work to do,” says Tiera of the honor. “My spark was reignited!”

Cervivor Rising Star Award – Claudia Pérez-Favela


Why She Won: “Claudia is all in, and she’s already doing incredible work – not only within the Hispanic community but also in the broader effort to end cervical cancer,” says Tamika. “If this is what she’s achieving right out of the gate, I can’t wait to see what she does next.”

What She Says: “The stigma surrounding gynecological cancers in the Latinx community drives my advocacy. It’s crucial because cervical cancer and HPV are preventable, and treatment is much more effective when caught early.”

Thank you to these dedicated advocates for amplifying the patient voice in everything they do, inspiring hope, resilience, and action in our collective mission to end cervical cancer. They embody the spirit of the Cervivor community and demonstrate the importance and power of sharing the stories of those affected by this disease.

Join the Movement

If you’re inspired by these patient advocate award winners work, consider becoming an advocate yourself. Here are ways to get involved:

  • Share Your Story: On the Cervivor website, write a blog post, or post on social media about your experience with cervical cancer and tag Cervivor!
  • Volunteer: Help organize events, participate in awareness campaigns, or support local initiatives.
  • Fundraise: Support our non-profit’s mission of empowerment, education, advocacy, and support.
  • Join the conversation on social media using #Cervivor and #EndCervicalCancer.

Together, we can create a future where cervical cancer is no longer a threat, and every patient has access to the care and support they deserve. Thank you again to Lindsay, Christy, Gwen, Tiera, and Claudia for shining bright as pillars of strength in the mission to end cervical cancer.

Breaking the Silence: The Powerful Connection Between Breast and Cervical Cancer

This month, Cervivor is shining a spotlight on the critical link between breast and cervical cancer, by highlighting the importance of awareness, early detection, and collective action. Many individuals in our community have bravely faced both cancers or carry the gene that increases their risk. By sharing their inspiring stories, expert insights, and vital information, we aim to break the stigma surrounding these diseases and empower you to take control of your health – above or below the belt!

The Intersection of Breast and Cervical Cancer
Did you know that some individuals carrying the gene that increases breast cancer risk can still be diagnosed with cervical cancer? This surprising connection underscores the significance of regular screenings and open conversations. By understanding the importance and similar benefits of breast and cervical cancer screenings, we can harness the power of prevention and early detection.

Key Similarities in Breast and Cervical Cancer Screening

  1. Purpose: Screening and early detection help identify cancer or cancerous cells before symptoms appear.
  2. Benefits: Both improve survival rates, lower healthcare costs, and reduce the need for more extensive treatments.
  3. Effectiveness: Regular mammograms find breast cancer early, while cervical cancer screenings can prevent or detect cancer at an early stage.

The Power of Awareness and Action
Awareness is not just the first step toward change—it’s the spark that ignites transformation. By educating ourselves and others, we can:

  1. Break the stigma surrounding breast and cervical cancer fostering open conversations that empower and heal.
  2. Encourage regular screenings for early detection giving ourselves and our loved ones the best chance for successful treatment.
  3. Support research and advancements in cancer prevention paving the way for a healthier future for all.

But awareness goes beyond statistics and medical facts; it’s about the power of storytelling. Sharing our stories reminds us that we are not alone—it connects us, inspires us, and strengthens our community. Stories have the power to heal, to motivate, and to bring hope to those who need it most.

In the spirit of unity and empowerment, we’re honored to share the journeys of Kadiana and Karen, two Cervivor Ambassadors who were directly impacted by cervical and breast cancer:

Meet Kadiana, Cervivor Ambassador

Meet Kadiana, Cervivor Ambassador from St. Lucia, who faced a cervical cancer diagnosis at 37 while visiting her sister. Diagnosed with Stage III squamous cell carcinoma, she endured through 32 rounds of external radiation, 6 rounds of brachytherapy, and 6 sessions of chemotherapy. Her journey took a pivotal turn when she tested positive for the BRCA1 gene mutation, leading to preventative surgery, including a double mastectomy. Despite the trials, Kadiana continues to spread awareness of HPV, HPV vaccine, cervical cancer screening, and genetic testing. Read more about Kadiana here.

Meet Karen, Cervivor Ambassador

Karen’s journey is a testament to resilience and advocacy. After being diagnosed with early-stage breast cancer, she received a cervical cancer diagnosis just 18 months later. Despite facing immense challenges, Karen has become a proud Cervivor Ambassador, spreading awareness about HPV prevention and cervical cancer. Read Karen’s inspiring story on the blog.

Take Action Today
The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) is a crucial initiative by the Centers for Disease Control and Prevention (CDC) aimed at providing life-saving breast and cervical cancer screenings to underserved women. Since its inception in 1991, the program has screened over 5.6 million women, detecting more than 57,000 cases of breast cancer and 12,000 cases of cervical cancer. The NBCCEDP provides free or low-cost mammograms and Pap tests to eligible women who lack health insurance or cannot afford screening services.

The program operates in all 50 states, the District of Columbia, and several US territories, partnering with local health organizations to deliver these vital services. By targeting women who are most vulnerable to delayed or foregone care, the NBCCEDP helps bridge the gap in cancer screening disparities, reducing mortality rates and improving health outcomes for thousands of women each year. To learn more about eligibility and program locations, visit the CDC website at https://www.cdc.gov/breast-cervical-cancer-screening/.  

Here are some tips on how you can help us increase screening rates:

  1. Schedule your preventative screenings now, and encourage your friends to do the same.
  2. Share Kadiana’s video, and Karen’s story with someone and encourage them to share as well.
  3. Explore our featured Cervivor store items or donate to support our mission.
  4. Join upcoming events to connect with others and stay informed.

Together, We Can Make a Difference
By acknowledging the screening similarities  between breast and cervical cancer, we can:

  1. Save lives through early detection.
  2. Break the stigma surrounding these diseases.
  3. Empower future generations with knowledge and awareness.

This is more than a movement—it’s a collective mission. Share your story, your story has the power to inspire. Help us spread awareness, and work together to eliminate cervical cancer. Together, our collective strength is unstoppable. 

You Are Worth It: Celebrating Women’s Health and Fitness

This month we acknowledge and celebrate women’s health and well-being for Gynecologic Cancer Awareness Month (GCAM). We’re utilizing today to remind women to take care of their physical and mental health.

 Did you know? Two-thirds of women in the United States provide regular support, are caregivers to others, and often forget about their own health and well-being. Unfortunately, this creates a greater risk for poor physical and mental health. We encourage women to make their health a priority.

According to the World Health Organization (WHO), the definition of health is as follows:

“Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” 

Regardless of what you think of this definition, the World Health Organization has not changed it since 1948. We know that sometimes, as women we tend to put ourselves to the side. However, we need to change our mindset and make ourselves a priority (just like our 2022 Cervical Cancer Awareness Month theme: Take Care of You).

Here are five tips to help you live a healthier life:

1. Checkups – Make sure you do not skip your regular checkups, screenings, and exams that you may need. We need to remember that prevention and early detection saves lives.

2. Nutrition – Eating and enjoying a balanced diet is essential for our overall health. Find a balance that works for your lifestyle. No matter what you think about diets, we ALL have one. A diet is simply a pattern of eating. Whatever health means to you, the right diet will support it. There is no one-size-fits-all model for dietary patterns and health.

3.  Get Active – We will not call it exercise but instead, we will say, “Move the body.” The body is never meant to be sedentary. Recent studies show us that sitting is the new smoking. Finding a movement that works for you is key. Starting small and working up to the recommended 150 minutes a week will give you so many benefits for your mind, your body, and your spirit.

4.  Sleep – We must try to sleep at least 7 to 9 hours at night. It is during this time that the body repairs, allowing healing and restoration to occur. Lack of sleep is associated with negative health effects. So in other words…get your snooze on, ladies!

5.  Hydration – Drinking water is crucial for our bodies. The majority of adults do not hydrate themselves close to the recommended level. Multiple studies report that 75% of adults in the U.S. suffer from chronic dehydration. As we age, your body’s thirst signal diminishes, so as a rule of thumb when you feel thirsty, you are already dehydrated. Please, please drink your water.

If all these steps are too overwhelming for you – believe me, you are NOT alone. 

New habits do not happen overnight. It takes repetition and we need to adapt them little by little into our lives and psyche until they become second nature. Some studies say that it takes an average of 66 days for a new behavior to become automatic – you have time to start now!

Mel Robbins states: “Old habits can take years to form. Forgive yourself if it takes more than a day to break them.”

Thank you Mel Robbins for reminding us to forgive ourselves if our work is not perfect and linear. Remember – success does not come from what we do occasionally, but from what we do consistently. 

If you are looking for support, you can join our Survivor Slimdown community. Survivor Slimdown is an online Facebook group open to ALL cancer survivors. It is a safe place for our community to support one another, and to challenge our mind, body, and spirit to live our best lives.

Patti Murillo-Casa is a retired NYC Police Officer and a 15-year cervical cancer survivor. She is a Cervivor Ambassador and the 2021 Cervivor Champion. She leads Survivor Slimdown and co-leads Cervivor Español. Patti is a Health Coach Alliance Registered Health Coach. She holds multiple certifications in the wellness and fitness space. She is also a member of the community advocacy board at Columbia University Herbert Irving Comprehensive Cancer Center. She resides in NYC with her husband of 25 years where she is a Group Fitness Instructor, Cancer Exercise Specialist, and a Health Advocate and Educator.

Why the Patient Voice is Essential to the President’s New Global Commitment to End Cervical Cancer

By Tamika Felder, Founder and Chief Visionary, Cervivor, Inc.

In case you missed the big news, President Biden hosted leaders from Australia, Japan, and India at his Delaware home this past weekend for the latest Quad Summit. Why is this big news? The gathering of these four key countries, one of several since 2020, marks a milestone in the fight to end cervical cancer worldwide.

As reported, the Summit launched the Quad Cancer Moonshot Initiative, aiming to significantly reduce cervical cancer rates in the Indo-Pacific region, which includes South Asia, Southeast Asia, and parts of Oceania, and accounts for one-quarter of global cervical cancer cases. Alongside the U.S., the other Quad countries are making huge commitments to medical equipment, HPV testing, and vaccines.

We can all learn a lot from Australia, which is setting the pace globally. The country is on track to become the first to eliminate cervical cancer, defined by the World Health Organization (WHO) as having fewer than four cases per 100,000 people. The WHO has also set a global deadline of 2030 to get rid of this disease for good. Other countries are closing in on the target including Sweden, Portugal, and Rwanda.

But here’s the thing: While these international efforts can be game-changers, they can’t achieve their goal without one crucial element – the voices of cervical cancer patients and survivors. That’s where Cervivor comes in.

Cervivor’s global community of cervical cancer patient advocates is growing and getting louder every day.

Why Patient Voices Matter

Cervivor has always focused on amplifying the voices of those directly affected by cervical cancer from way back when I founded the organization in 2005 after I survived cervical cancer in my twenties. Sure, I was grateful to be alive – minus my uterus and facing long-lasting health complications – but I was angry. There was an HPV test and there was about to be an FDA-approved vaccine, but no one was talking about how cervical cancer is almost entirely preventable. What happened to me shouldn’t have happened to anyone else, especially the nearly 350,000 women it continues to kill worldwide each year. 

When Dr. Linda Eckert, one of our 2024 Cervivor Champion Award winners and a global expert in cervical cancer prevention, released her book Enough: Because We Can Stop Cervical Cancer this January (during Cervical Cancer Awareness Month, of course), she made sure to include stories from our Cervivor community members. Why? Because our voices are crucial in every initiative aimed at ending this disease. By sharing our lived experiences, we can influence everything from drug trials to legislation to, yes, international collaborations. These authentic, often raw, stories remind the world that cervical cancer isn’t just a statistic – it impacts real women and families.

In this video, cervical cancer expert Dr. Linda Eckert shares why she wrote Enough and how inspired she was by the dozens of survivors whose stories it features, including members of our Cervivor community.

Australian Prime Minister Anthony Albanese shared a similar sentiment with the announcement of the Quad initiative, calling attention to the women in the Pacific who die of the disease at up to 13 times the rate of women in Australia. “These people are not numbers,” he said. “They are our neighbors, members of our Pacific family, and we’re stepping forward to help.” 

Cervivor: Leading the Charge

From our annual Cervivor School, which empowers survivors to become advocates, to our upcoming Cervical Cancer Summit (sign up for updates!), Cervivor is at the forefront of the fight against cervical cancer. We partner with healthcare providers and organizations to improve access to care and lead awareness campaigns like #Screen4Me. We also advocate for critical legislation, such as the PREVENT HPV Cancers Act of 2021 and its expansion in 2023. Our efforts extend to high-level forums, where we drive discussions to ensure cervical cancer prevention and care remain a priority.

Like President Biden’s reported belief in a “latticework approach” to diplomacy, Cervivor fosters collaboration. By working with healthcare professionals, researchers, and other advocacy groups, we create a united front against cervical cancer. Our community members serve on guideline panels, advisory boards, and in research studies. This year, I was honored to be appointed to the National Cancer Advisory Board by President Biden, a role that allows me to continue championing the voice of survivors at the highest levels. Their perspectives are essential to shaping policies, informing research, and pushing for a future where cervical cancer is no longer a threat.

Cervivor Founder Tamika Felder moderates the 2024 Cervical Cancer Forum at the White House as part of the Biden Cancer Moonshot Initiative.
That’s me on the left moderating the 2024 Cervical Cancer Forum at the White House as part of the Biden Cancer Moonshot Initiative.

When I had the privilege of moderating the Cervical Cancer Forum at the White House earlier this year, I called it a historic moment – researchers, policymakers, community workers, healthcare providers, patients, and survivors came together with national leaders to elevate the patient voice. With the latest Quad Cancer Moonshot Initiative, it’s even more crucial that we raise awareness globally.

Now is the Time to Join Us

Never before has cervical cancer been so at the forefront of the world stage. Now is the time for all of us to unite in the fight to eliminate it. Together, we can do this – it is not just possible; it’s necessary. Too many lives are being lost to cervical cancer worldwide. This is a human issue that affects us all.

This graphic of people we have lost in our Cervivor community represents only a fraction of the women still dying from this preventable disease.

Cervivor serves as a megaphone for the patient and survivor voice, but we need your help to amplify the message that this cancer can be prevented if we use the medical knowledge and tools at our disposal. We have to reach that mom or sister who hasn’t gotten screened lately because she’s “too busy” but is noticing “weird” symptoms down there. We have to let parents know that their kids may never have to go through cervical cancer treatment (which isn’t pretty, I can tell you) if they get vaccinated now. For that matter, the American Society of Clinical Oncology (ASCO) announced in May that the HPV vaccine has been linked to a decrease in HPV-related head and neck cancer in men, and that people who are vaccinated are less likely to require certain surgical cancer treatments. Truly, getting your kids vaccinated is giving them the gift of a healthier future. 

This screenshot of a Facebook post shows global cancer advocate Tamika Felder addressing a group at the White House for a Biden Cancer Moonshot event on October 24, 2024, where First Lady Dr. Jill Biden tagged and personally thanked her.
While I don’t do what I do for recognition, getting a thank-you on Facebook from First Lady Dr. Jill Biden a couple of years ago was pretty gratifying.

As distinguished professor Dr. Noel Brewer of the UNC Gillings School of Global Public Health – an HPV expert and trusted ally in our mission – has emphasized, “In reality, data and statistics may only hold sway on the pages of medical journals. What truly matters are the people and their lived experiences. Sharing powerful stories cuts through the noise and connects us to what is vital.” He likens explaining data without the patient experience to “walking into a firefight armed only with a calculator.”

At Cervivor, we are armed with hundreds of powerful stories – too many stories, to be honest. I implore you to join our fight to end this disease now, not later. Who’s with me?

Tamika Felder is a cervical cancer survivor and the Founder and Chief Visionary of Cervivor, Inc., a nonprofit dedicated to cervical cancer awareness and prevention through its global community of patient advocates. Driven to eradicate cervical cancer within her lifetime, she is a leading voice in healthcare, HPV education, and cancer prevention.

Tamika has shared her story at Presidential Panels, trained thousands of patient advocates, and serves on the steering committees of the National Cervical Cancer Roundtable and the National HPV Vaccination Roundtable. Recently appointed by President Biden, she is now a member of the National Cancer Advisory Board. Tamika’s impactful storytelling has also been featured on Bravo’s Real Housewives of Beverly Hills and in the documentaries Someone You Love: The HPV Epidemic and Conquering Cervical Cancer.

Celebrating Hispanic Heritage Month: Amplifying the Voices of Latina Cervical Cancer Survivors 

With a growing population of 62.5 million, Hispanics – people from Spanish-speaking countries – now make up 19% of the U.S. population, lending diverse perspectives and significant economic growth. Despite these contributions, disparities in health outcomes and representation persist such as the following. 

Cervical Cancer Disparities in Hispanic Communities

  • Higher Incidence Rates: Hispanic women have higher incidence rates of cervical cancer compared to non-Hispanic white women (American Cancer Society, 2024).
  • Lower Screening Rates: Hispanic women are less likely to undergo regular cervical cancer screenings, leading to delayed diagnoses and poorer outcomes (Centers for Disease Control and Prevention, 2024).
  • Limited Access to Healthcare: Language barriers, cultural differences, and lack of access to healthcare providers contribute to disparities in cervical cancer prevention and treatment among Hispanic women (National Cancer Institute, 2024).
  • Stigma and Misinformation: Cervical cancer is often stigmatized in Hispanic communities, leading to misconceptions and reluctance to discuss the topic openly (Latinas Contra Cancer, 2022).

As Cervivor Ambassador Claudia Perez-Favela, the recent winner of Cervivor’s 2024 Rising Star Award, says, “In Mexican culture, a cancer diagnosis equals death, and people don’t talk about HPV or female cancers. It is why I wear Cervivor on my chest everywhere I go and won’t stop fighting to end cervical cancer.” 

Why Hispanic Heritage Month Matters

As we observe Hispanic Heritage Month, which runs from September 15 to October 15, Cervivor is dedicated to highlighting these critical issues and is excited to announce our upcoming podcast episode, “Breaking Stigmas within the Hispanic Community,” releasing September 18. This special feature will shine a spotlight on the experiences, achievements, and challenges faced by Latina and Hispanic communities, with a focus on addressing the disparities in cervical cancer.

You’ll also get to meet two of our courageous Cervivor Ambassadors Claudia and Gilma Pereda, who share their personal stories, insights, and advocacy expertise. They’ll discuss:

  • The importance of cultural heritage and identity
  • Breaking down barriers and stereotypes
  • Empowerment through education and entrepreneurship

By amplifying their voices and others and addressing the specific needs of Hispanic cervical cancer survivors, Cervivor aims to drive awareness and foster change within the community. Join us in recognizing Hispanic Heritage Month by engaging with our content and supporting the mission to end cervical cancer.

Join the Conversation

In addition to tuning in for the podcast, connect with Claudia, Gilma, and other Spanish-speaking members of the Cervivor community on our Cervivor Español Facebook group (send a request to join if you aren’t already a member). By working together and keeping the conversation going, we can break down stigmas, promote education, and empower Hispanic communities to prioritize their health. Stay tuned for more Cervivor updates and join us in celebrating Hispanic Heritage Month!

Creating Connections Program Spotlight: Breaking Down Barriers and Building Community

Cervivor’s Creating Connections Program is a ray of hope for individuals affected by cervical cancer. The innovative program is dedicated to cultivating a supportive community, addressing stigma, and providing essential resources through a monthly virtual support group. 

How does the Creating Connections Program help?

The program offers a safe space for people to share their experiences, receive emotional support, and connect with others who understand their journey. It provides:

  • An online support group
  • Educational resources
  • Mentorship and coaching
  • Advocacy and awareness initiatives

“Being a part of the Creating Connections cervical cancer support group has been life-changing. It’s given me a safe space to share my journey, connect with others who truly understand, and find strength in community,” says Cervivor community member Janet Tennyson, who’s been attending the virtual group from her home in California for the last few months. “Through our shared stories and support, I’ve gained hope, resilience, and the comfort of knowing I’m never alone.”

How does Cervivor address stigma?

The stigma surrounding HPV and cervical cancer often leads to misinformation, fear, and silence, which can hinder prevention, diagnosis, and treatment. At Cervivor, we tackle stigma head-on, especially through our Creating Connections virtual meetings. Here are some of the ways they help lessen stigma:

Sharing Personal Stories and Experiences

We create a safe space for individuals to share their personal stories, experiences, and struggles with cervical cancer and HPV-related diseases. By sharing their journeys, we put a face to the disease and show that it can affect anyone, regardless of age, race, or background.

Promoting Education and Awareness

We cultivate an environment where individuals feel comfortable discussing their experiences, asking questions, and seeking support. We know that education is key to dispelling myths and misconceptions surrounding cervical cancer and HPV-related diseases. We provide accurate and reliable information to help individuals understand the disease, its causes, symptoms, and treatment options. Open conversations help to break down barriers and reduce stigma.

Fostering a Sense of Community and Belonging

We bring individuals together to form a supportive community where they can connect, share, and support one another past our monthly virtual meeting. This sense of belonging helps to alleviate feelings of isolation and loneliness, often associated with stigma.

Talitha Stempin, a Cervivor community member from Michigan shares her experience of joining last month’s call, “Creating Connections was so powerful! I connected with multiple people just during one session! I’m thankful for the new friends who GET IT!”

The Creating Connections Program is a testament to the transformative power of community. By tackling stigma and offering vital resources, Cervivor is making a profound impact on lives and cultivating a supportive network for those affected by cervical cancer.

How to Join

If you or someone you know is navigating this journey, know that support, hope, and healing are within reach. Join the Creating Connections Program to connect with others who understand your experience.

Ready to connect? 

  • Register now at https://cervivor.org/events/. 
  • When: The second Tuesday of every month
  • Where: Zoom platform (link provided upon registration)

Take the first step towards a supportive community. Register today and find connection, hope, and healing.

Remembering Gina Yong Lee Gossett

Last week, we lost Gina Yong Lee-Gossett, a courageous cervical cancer patient and advocate whose Cervivor spirit inspired countless lives. As we come to terms with her passing, we take a moment to reflect on the profound impact Gina had on our community and the lasting legacy she leaves behind. 

Cervivor’s Founder and Chief Visionary Tamika Felder shares in our collective grief:“Gina was a beacon of strength, charisma, and humor. Despite the challenges she faced – initially beating cervical cancer, enduring its return, and navigating all the emotions and struggles that come with it – she remained determined to move forward and stay positive. Her final Instagram post, where she shared her decision to enter hospice, was a stark reminder of the devastating effects of this disease. This loss underscores the fragility of life and the importance of our work to prevent cervical cancer. Gina leaves an indelible mark on our organization. Her contributions – from expressing her gratitude for caregivers in a Cervivor blog to her uplifting presence in every interaction will our community – will never be forgotten.”

Gina faced cervical cancer for over seven years, a testament to her extraordinary determination, positivity, and self-advocacy. Her selfless sharing of experiences, advice, and support has left a lasting mark on the Cervivor community.

Cervivor Ambassador and Podcast Host Joslyn Chaiprasert-Paguio shares cherished memories of Gina: “Over two years ago, I had the honor of meeting Gina, a woman whose smile and spirit could instantly brighten any room. We bonded quickly over our shared experiences with cervical cancer, and from that moment on, Gina became a source of inspiration in my life. Her optimism was contagious, and she faced her diagnosis with an unwavering grace that left a lasting impact on everyone who knew her. Gina was passionate about ensuring that everyone, especially for those in the Asian community, had access to adequate healthcare. She was a fierce advocate, driven by her belief in the importance of equal treatment and care for all. Even in the face of her own challenges, Gina never wavered in her mission to make a difference. Though Gina has passed, her legacy lives on in the those she touched and the fight she championed. I promise, Gina, that we will continue this fight together, honoring the spirit and strength you showed us every day.”

Cervivor Ambassador and Community Engagement Liaison Morgan Newman expresses the depth of this loss: “I will forever cherish the memory of Gina’s presence at the 2021 Cervivor Brand Day, which was my first in-person event post-pandemic. Amidst the hustle and bustle, Gina’s bright humor and incredible smile were a breath of fresh air, making everyone feel welcome and at ease. Her positivity was infectious, and I was deeply moved by her kindness and compassion. In a room full of strangers, Gina had a way of making each person feel seen and valued. I will never forget her spark.”.

Gina was driven by a deep passion to inspire others to take control of their health. Her commitment to eradicating cervical cancer led her to engage in various initiatives, from participating in an informative Surrogacy Q&A session to attending the 2021 Cervivor Brand Day. Cervivor Ambassador and fellow surrogate mom Ginny Marable shares: “I think what stands out most is her grit and grace through it all – she showed us what truly living with cancer looks like and she never stopped cheering others on around her. She made a positive impact on my life and I will forever do my best to honor her legacy. She holds a special place in my heart.”

Gina’s journey resonated deeply with the Cervivor community, but her impact extended far beyond, as she shared her story with numerous media outlets, including news interviews and articles. Through these platforms, Gina amplified her message of empowerment, urging individuals to prioritize their health and take the crucial step of getting regular cancer screenings. By speaking openly about her experiences, Gina humanized the statistics and reminded everyone that cervical cancer affects real people, loved ones, and communities. 

Chief Diversity Equity and Inclusion Officer Kimberly Williams remembers how Gina made an immediate impression on her: “I only met Gina once, but her radiant smile and strength left an indelible mark on me. Despite the challenges she faced, she refused to give up, choosing instead to share her story and be a guiding light for others. Her spirit will continue to inspire all who were fortunate enough to meet her.”.

Long-time Cervivor Makeup Artist Jessica Winchell offers fond remembrances of Gina, “Sweet Gina, such a gentle soul. I remember meeting her for the first time at Cervivor’s Brand Day. She was so happy to be there that weekend. It was my greatest honor to do her hair and makeup that day – we laughed and shared stories like we had known each other forever. I remember her smiling big when she saw herself. From being nervous to sit in the chair, she left confident to share her story, she reminded me what bravery looked like one big smile at a time. Gina will be sorely missed and not easily forgotten.”.

To honor her legacy, let’s commit to sharing her story, reminding our friends and loved ones of the importance of regular screenings, and educating others about the importance of the HPV vaccine. By taking action and spreading awareness, we can keep her memory alive. Please #Screen4Gina and help protect others.

Amplifying Our Cervivor Footprint on National Patient Advocacy Day

Today, we celebrate National Patient Advocacy Day, recognizing the profound impact of patient advocacy in improving healthcare outcomes and advancing policy and research. At Cervivor, we’re proud of our organization’s commitment to empowering patients and families affected by cervical cancer. Through our work, we’ve partnered with esteemed organizations like The National Cancer Institute and The National HPV Vaccination Roundtable, and hold positions on leading coalitions such as The American Cancer Society National Roundtable on Cervical Cancer (ACS NRTCC). 

We’re highlighting the remarkable work of our community members, who have shared their stories, volunteered their time, and mobilized their networks to drive change. Together, we’ve raised awareness, promoted education, and advocated for policies supporting cervical cancer prevention and treatment, as well as HPV vaccination access. Our collective efforts – our “Cervivor footprint” – have led to:

  • Influencing policy changes, such as advocating for expanded HPV vaccination access through the PREVENT HPV CANCERS ACT and ensuring sustained funding for cervical cancer screening services like Medicaid and CHIP funding for Pap tests and HPV testing plus increased support for The National Breast and Cervical Cancer Early Detection Program (NBCCEDP).
  • Contributing to research initiatives like providing patient perspective and expertise to studies focused on cervical cancer prevention, treatment, and survivorship; and supporting the development of new diagnostic tools and treatments, including participation in advisory boards for clinical trials and innovative technologies.
  • Providing trusted resources and support programming for patients and families through social media content, community outreach initiatives, virtual and in-person programming, and patient advocacy trainings. 

As we acknowledge the power of patient advocacy, we’re reminded that our work doesn’t stop here. We’re urging our community to take an essential step further with a simple call-to-action: share Cervivor with your local healthcare provider and cancer center. By doing so, you’ll help ensure that those affected by cervical cancer have access to our trusted resources, support programming, and advocacy efforts.

We also acknowledge the dedicated healthcare professionals who partner with us to amplify our mission. Together, we have achieved more. We invite professionals to join us in our purpose by:

  • Partnering with Cervivor on local initiatives, such as immunization coalitions, advisory boards, and research projects
  • Hosting a Cervivor speaker at a local event or virtual gathering
  • Collaborating on a fundraiser to support Cervivor’s mission
  • Sharing expertise through a guest blog post or being a featured guest on Cervivor platforms
  • Joining the Cervivor directory to become a potential speaker for upcoming events like the Cervical Cancer Summit Powered By Cervivor, Cervivor School, or the Cervical Cancer Patient Advocacy Retreat for Communities of Color

Simply submit your information by becoming a Partner in Purpose here. Together, we can accelerate progress toward our mission of ending cervical cancer. Join us in continuing to amplify patient voices, drive research, and support those impacted by this disease.

National Nonprofit Day: Celebrating Cervivor’s Impact on the Cervical Cancer Community

August 17th marks National Nonprofit Day, a day to recognize the tireless efforts of organizations making a difference in their communities. Cervivor, Inc. is a nonprofit dedicated to supporting cervical cancer patients, survivors, caregivers, advocates, and beyond. What sets Cervivor apart is its leadership and staff, comprised of cervical cancer survivors, ensuring a deep understanding of the community they serve.

Tamika Felder, Founder and Chief Visionary
As a 23-year cervical cancer survivor, Tamika knows firsthand the importance of support and advocacy. She created Cervivor to fill gaps in those sharing their stories, those receiving care, and those seeking crucial resources. “Cervivor is my passion and purpose,” she says. “I’m committed to ensuring no one faces cervical cancer alone.”

Morgan Newman, MSW, Community Engagement Liaison Morgan’s experience as an 8-year metastatic and recurrent survivor and social worker drives her to connect community members with vital resources. “I understand the struggles and triumphs,” she shares. “I’m dedicated to helping others navigate their journey.”

Kimberly Williams, MHCM, Chief Diversity Equity and Inclusion Officer
A 5-year metastatic and recurrent survivor, Kimberly’s story fuels her passion for equity and inclusion. “Everyone deserves access to quality care and support,” she emphasizes. “I work to ensure Cervivor’s resources reach all who need them.”

Cervivor, Inc. provides comprehensive support, including patient resources and community connections. Their staff understands the journey, offering guidance and empathy. They empower community members to take control of their health and well-being.

Cervivor, Inc. is also a vocal advocate for policy changes that benefit the cervical cancer community. They work tirelessly to ensure equitable access to healthcare, screenings, treatments, and vaccination. Their efforts have led to upholding health equity no matter where you’re located. 

On National Nonprofit Day, we invite you to join Cervivor’s mission:

We can make a difference in the lives of those impacted by cervical cancer. Visit https://cervivor.org/ to learn more and get involved. Let’s continue to celebrate the power of nonprofits like Cervivor, Inc. and work towards a future where everyone can thrive past a cervical cancer diagnosis.

Celebrating Cervivor’s Pathway To Parenthood Week: Embracing the Beauty of Modern Families

As we observe Cervivor’s Pathway To Parenthood Week, we honor the diverse and often non-traditional journeys to building a family. Survivorship encompasses not only survivors of cervical cancer but also those who have faced infertility, adoption, surrogacy, foster care, and other paths to parenthood.

In today’s world, family structures have evolved, and traditional norms no longer define the only way to build a family. Whether through adoption, surrogacy, foster parenting, or blended families, every journey is unique and valuable. Cervivor Aunties, Godparents, and “Bonus Kids” all play vital roles in the landscape of modern families.

Many in the Cervivor community know that life is unpredictable, and circumstances can change very suddenly. However, within the chaos, it’s essential to find peace, support, and necessary resources. The Cervivor community is a testament to each one of these pillars. Founder and Chief Visionary, Tamika Felder expresses, “I had always dreamed of being a mother. Over the next 20 years, I never lost the desire to be a mom. But I buried it deep, deep inside. I founded a community, Cervivor, to advocate for other cervical cancer patients. I helped change laws around fertility preservation. My legacy wasn’t going to be the lives that I brought into this world but the lives I would save.”

But on April Fools Day 2021, everything changed for Tamika. Fast forward now to 2024, The Virginia “Ginny” Marable Cervivor Baby Gift Fund was established after Tamika received the most exceptional gift – from one Cervivor to another. This fund brings hope for those navigating the challenges of building a family. By donating to this fund, you can provide crucial assistance and support to Cervivors on their journey to parenthood. Every contribution brings us closer to making their dreams a reality.

As we navigate the complexities of modern family building, it’s essential to connect with others who understand our journeys. The Cervivor Podcast offers a safe space for intimate conversations, expert insights, and inspiring stories of hope and resilience. Join us as we dive into the experiences of Cervivors and their allies, exploring topics from fertility and surrogacy to emotional healing and advocacy. Our upcoming episodes in season 4 feature:

Episode 7: Anna Ogo and Fertility Lawyer, Rijon Charne share their experiences and insights on navigating the legal aspects of family building. This episode airs on Wednesday, August 7, 2024.

Episode 8: Dulcely Tavarez and Dr. Terri L. Woodard discuss the intricate link between cancer and infertility, offering valuable insights and hope for those facing similar challenges. Tune in on Wednesday, August 21, 2024.

Let’s come together to celebrate the diversity of modern families and support those on their journey to parenthood. Donate to the Virginia “Ginny” Marable Cervivor Baby Gift Fund. As a community, we can make a difference and empower others to build their families with hope, love, and support.

If you’re a cervical cancer patient or survivor who has navigated fertility preservation, surrogacy, foster care, or become a godparent after cancer, we want to hear from you! Your story has the power to inspire, educate, and empower others who are walking a similar path. By sharing your experiences, challenges, and triumphs, you can help create a ripple effect of hope and resilience within the Cervivor community. Take a moment to share your story today and be part of a movement that celebrates the strength and diversity of modern families.

From Advocacy to Support

We believe that patient advocacy is the catalyst for meaningful change in the mission to end cervical cancer. That’s why we’ve dedicated ourselves to training and amplifying the voices of patients and survivors, ensuring that their unique perspectives shape the narrative and inform decision-making. By centering the patient perspective – both individually and collectively – we’re creating a powerful community voice that demands attention, sparks action, and drives progress. 

Through our advocacy efforts, we’re not just reacting to the status quo; we’re actively creating the change we want to see – a world where cervical cancer is detected early, treated with dignity and compassion, and prevented. By elevating the patient voice, we’re rewriting the story of cervical cancer and paving the way for a brighter future for generations to come.

As July, our self-proclaimed Patient Advocacy Month comes to a close, we are proud of our progress in amplifying the voices of cervical cancer patients and survivors. Our small team of dedicated cervical cancer survivors and vast global community of passionate volunteers has worked tirelessly to raise awareness, educate, and advocate for policy changes that benefit our community.

But our work continues. 

We want to emphasize that every story matters in our mission to end cervical cancer. We know that each person’s experience with cervical cancer is unique, and we’re committed to providing a safe space for sharing those stories. Our support programming empowers survivors and patients to take control of their health, connect with others who understand their journey, and find resources and information to navigate the complex healthcare system. 

What We Offer

  • Online Support Groups: A safe space to connect with others who share similar experiences.
  • Mentorship: Pairing patients with trained survivors who can offer guidance and support.
  • Educational Resources: Accurate and reliable information on cervical cancer diagnosis, treatment, and beyond.
  • Community Events: Opportunities to connect in person and build a supportive community.

As we launch into highlighting our support programming, we invite you to join us. Share your story, connect with others, find the support you need, and be a crucial part of the community. Together, we can create a world where no one feels alone in their journey and cervical cancer will be a thing of the past.

Get Involved

  • Follow Us: On social media to stay up-to-date on our support programming and community events.
  • Share: Your story and inspire others to do the same.
  • Sign Up: Are you a provider or community support person? Become a Partner in Purpose.
  • Donate: Support our mission and help us continue to provide vital resources and support to our community

We’re reminded that the journey to healing and wholeness is not a solitary one. Creating connections with others who understand our struggles is the foundation upon which we build resilience. Access to trusted resources empowers us to take control of our health and well-being. And it’s the undeniable sense of community – the feeling of being seen, heard, and supported – that accelerates our healing. 

At Cervivor, Inc., we believe that these elements are the pillars of a supportive ecosystem that cultivates hope, facilitates growth, and transforms patients and survivors into thrivers. Join us in cultivating this community, and we’ll rise stronger, more united, and more determined than ever to overcome the challenges of cervical cancer.

The Ladies in the White Shirts

Cervivor is committed to making a difference by working to close disparity gaps that continue to plague Communities of Color. This commitment led Cervivor’s Founder and Chief Visionary, Tamika Felder, and Cervivor’s Chief Diversity Equity and Inclusion Officer, Kimberly Williams to unite community members this past weekend from around the world—Honduras, St. Lucia, and U.S. states like Texas, Maryland, California, Alabama, New York, North Carolina, Iowa, and more—to Cleveland, Ohio, for the Cervical Cancer Patient Advocacy Retreat for Communities of Color. This retreat wasn’t just a local event; it was a global movement. We had community members participating via Zoom from Mexico, the Caribbean, and Africa, emphasizing our commitment to advocating for change worldwide.

Empowering Knowledge
Renowned experts from the Cleveland Clinic and Langston Hughes shared their insights on cervical cancer prevention, treatment, and advocacy. Attendees gained a deeper understanding of the importance of:

  • Routine screenings and HPV vaccination.
  • The need for cultural competency in healthcare.
  • Ways for them to engage in community outreach and education.

After an expert-led panel, Chief Diversity Equity and Inclusion Officer, Kimberly Williams recapped the powerful message, “An educated patient takes action.”

(From Left to Right: Dr. Goje, Dr. Beffa, Dr. Amarnath, Dr. Sutherland of the Cleveland Clinic, and Kimberly Williams, Chief DEI Officer, Cervivor, Inc.).
(Ms. Chantel Wilcox of Langston Hughes shared the mission-driven work in the community).

Participants also had the opportunity to discuss self-collection cervical cancer screening and participated in discussions that answered questions about self-collection and its importance in eliminating cervical cancer. This discussion aided the advocates in understanding and promoting self-collection as a viable option for early detection when they return to their communities.

A special session with Dr. Leeya Pinder, who practices both in the United States and Africa, provided a global perspective on the issue of access (not just screening and treatment, but also clinical trials). Dr. Pinder explained the dire need for advocacy to end the disease, highlighting that many individuals with a cervix in these countries lack access to essential screening materials, leading to detrimental results. Her insights allowed participants to see the full circle of need in cervical cancer prevention and treatment.

(Cassie Ricci, Roche Diagnostics, discusses the latest for self-collection).
(Dr. Leeya Pinder pays acknowledgment to Mrs. Henrietta Lacks during an impactful session).

Turning Knowledge into Action
On Saturday, Cervivor launched Cervivor Cares, which is our initiative to raise awareness about cervical cancer in communities through education, volunteering, and active presence. We engaged in community outreach, raised funds, and supported the mission to eliminate cervical cancer by providing essential resources and promoting access to necessary screening and treatment for all. 

What better way to launch Cervivor Cares, than a Cervivor in Action day after a full day of classroom training? That’s right, our retreat participants increased their advocacy footprint by putting their knowledge into action. They volunteered their time at a clinic hosted by Medworks and the Cleveland Clinic that provided preventative screenings to the underserved community of Cleveland, Ohio. 

(Cervivor Español and Latinx Attendees).
(Dr. Mary Sia Uy-Kroh, MedWorks Board Member, sharing how Cervivor was making a world of impact).

It was not only an opportunity for preventive screenings, it was an opportunity for our participants to bring education and empowerment to all those who attended and were touched by our volunteers. Without hesitation, our retreat participants assisted by sharing their stories and expressing the importance of our mission. Our Cervivor Español, attendees translated to and for patients in every facet including the exam room so patients understood the physician’s questions and requests. This group put the information they learned into action immediately. Our participants met people where they were, in their daily routines —urging them to schedule their cervical cancer screenings, attend follow-ups, and the importance of HPV vaccination. 

As they shared their stories and stressed the importance of cervical cancer screenings and HPV Vaccination, the clinic was buzzing with excitement. Patients and staff alike began referring to them as “The Ladies in the White Shirts,” urging others, “You need to go talk to the ladies in the white shirts.”  These Cervivors were educating patients before they even walked through the door, helping them understand that regardless of their past, getting screened and following up on any abnormalities now is crucial. The retreat participants’ presence underscored the importance of the Cervivor mission and served as a reminder that their story mattered, and was already making a difference.

Embracing the Spirit of the Ladies in the White Shirts
As we reflect on this transformative event, we celebrate the spirit of “The Ladies in the White Shirts”—the Cervivor community. Each of you embodies this spirit by wearing your shirt, sharing your story, and advocating for screening. Your dedication makes you a vital part of the movement to end cervical cancer. In the words of Gwendolyn Jackson, “You have prepared me to go out into my community.” If you don’t feel prepared, we have programs available for you!

Lindsay Gullatte-Lee (Mentor) and Gwendolyn Jackson (Attendee) in their white Cervivor Cares tees.
(A snapshot of programming Cervivor offers).

We encourage everyone to grab your Cervivor Spark, use the hashtags #Screen4Me and #Cervivor, and continue advocating for cervical cancer screenings. By sharing your story and spreading awareness, you become a powerful advocate, helping others access the screenings they need and contributing to a future free from cervical cancer. Together, as a community working to eradicate cervical cancer, let’s continue to make our voices heard, drive change, and support each other in this crucial mission.

Cervivor would like to extend its sincerest gratitude to our sponsors, including Pfizer, Genmab, Roche, and The Marchetta Family (Vince, Amanda, & William in honor of their late wife and mother, Betsy), as well as our in-kind donors, La Roche-Posay, Kafela, Lepley & Co., and Kesh the Creative, for their generous support and contributions to our mission.

How Cervivor is Making a Difference

At Cervivor, we believe that advocacy is a crucial step towards creating change and improving the lives of those affected by cervical cancer. Our community members are empowered to make a difference through various advocacy levels, from individual to policy-level efforts. In this blog post, we’ll highlight examples of how Cervivor has participated in different types of advocacy.

Individual or Self Advocacy

  • Sharing personal stories and experiences to raise awareness about cervical cancer and its impact.

  • Encouraging friends and family to get screened for cancer and vaccinated against HPV.
  • Educating those impacted by cervical cancer to:
    • Seek a second opinion when needed.
    • To be aware of and engage in shared decision-making with their healthcare providers to ensure informed and empowered medical choices.

Organizational and Community Advocacy

  • Partnering with cancer and health-mission organizations to amplify our message and expand our reach.
  • Collaborating with healthcare providers to improve access to cervical cancer screening, vaccination, treatment, and survivorship phases throughout the continuum of care.

  • Organizing local events and fundraisers to support cervical cancer awareness.
  • Building relationships with community leaders to promote education and screening initiatives like our Black Cervix Chat and #Screen4Me. 

Policy and Legislative Advocacy

  • Supporting legislation that funds research and education initiatives related to cervical cancer.
  • Creating awareness through city and state awareness proclamations.

  • Advocating for policies that increase access to cervical cancer screening and HPV vaccination like Representative Kathy Castor’s “PREVENT HPV Cancers Act” in 2021 and again with its expansion in 2023.
  • Leading the discussion at the Biden Cancer Moonshot White House Cervical Cancer Forum during Cervical Cancer Awareness Month (and beyond) to:
    • Raise awareness about the importance of education, prevention, early detection, and treatment.
    • Spur action among policymakers, healthcare providers, and the general public to prioritize cervical cancer prevention and care.

Support Advocacy

  • Creating a safe and supportive community for individuals to share their experiences and connect with others through various intersectionalities. 

Through these various levels of advocacy, Cervivor is making a tangible impact in the mission to end cervical cancer. By empowering our community members to take action, we are creating a ripple effect of change that will ultimately lead to a future where cervical cancer is a thing of the past. Won’t you join us in our mission to make a difference?

The Living Life List

Today, we introduce the Living Life List– a powerful spin on the traditional bucket list. Inspired by the remarkable Erica Frazier Stum, our late Lead Cervivor Ambassador. This list is not about checking off experiences before a looming deadline, but about living a purposeful, meaningful, and passionate life. Period.

Erica, who lived with cancer from age 27 to 33, rejected the notion of a “bucket list.” Instead, she created a vibrant, active list of experiences she wanted to have and things she wanted to achieve in her lifetime. She embraced life with intention and joy, refusing to be defined by her cervical cancer diagnosis. Erica would have been celebrating her 39th birthday today.

This list is a testament to Erica’s spirit and a reminder that life is precious, valuable, and worth living to the fullest. It’s a call to action to:

  • Pursue your passions: Whether it’s writing, art, or advocacy, make time for what brings you joy and fulfillment.
  • Connect with others: Build meaningful relationships with loved ones, fellow advocates, and those who understand your journey.
  • Travel and explore: Discover new places, cultures, and experiences that broaden your perspective and nourish your soul.
  • Make a difference: Use your voice, share your story, and advocate for others impacted by cancer.
  • Practice self-care and self-love: Prioritize your physical, emotional, and mental well-being.

Take a moment to reflect on what YOU want to achieve, experience, or add to your Living Life List:

  • What brings me joy and fulfillment?
  • How can I make a positive impact in the lives of others?
  • What experiences do I want to have in the next year, five years, or decade?
  • How can I prioritize my well-being and self-care?
  • What legacy do I want to leave for others?

In addition to living a fulfilling life, many patient advocates are driven to make a difference in the lives of others. Here are some questions to help you amplify your advocacy:

  • What specific issues or causes do I want to champion?
  • How can I share my story to inspire and educate others? 
  • What organizations or initiatives align with my values and goals? 
  • How can I mobilize others to join me in advocacy efforts?
  • What policy changes or legislative actions can I support to drive meaningful progress? 

The Living Life List is a celebration of life, hope, and resilience. It’s a reminder that every day is precious and that we all have the power to live with purpose and passion, just like Erica. We can expand the Living Life List to include our advocacy efforts and increase the impact we have every day. So, take the first step today – start your Living Life List and begin living the life you deserve.

Erica’s impact extends far beyond this blog post. To further celebrate and honor her life, explore the following resources:

Amplifying Voices for a Cervical Cancer-Free Future

As we closed out National Cancer Survivors Month in June, Cervivor launched its own Patient Advocacy Month in July serving as a critical initiative that fuels our mission to end cervical cancer. This dedicated month highlights the significance of patient advocacy and empowers survivors, thrivers, and community supporters to join forces in the mission to end this preventable disease.

Patient advocacy is the backbone of the Cervivor organization. It’s the passion and dedication to ensuring that patients’ voices are heard, their needs are met, and their rights are respected. It’s about creating a platform for patients and survivors to share their stories, receive support, and access necessary resources. Patient advocacy is the catalyst for change, driving policy reforms, research advancements, and community engagement.

Patient advocacy is vital because it:

  • Humanizes the Statistics: Behind every cervical cancer diagnosis, there’s a face, a story, and a family. Patient advocacy puts a personal touch on the numbers, reminding us that every life and every story matters.
  • Breaks Down Barriers: Advocacy helps bridge gaps in healthcare access, education, and support, ensuring that no one faces cervical cancer alone.
  • Drives Progress: By amplifying patient voices, we push for innovative research, improved treatment options, and evidence-based policies.
  • Cultivates Community: Patient advocacy builds a network of patients, survivors, thrivers, and supporters, creating a safe space for connection, healing, education, and empowerment.

This Patient Advocacy Month, we invite you to:

  • Share Your Story: Write, post, or video-share your experience with cervical cancer or your support for the cause.
  • Wear Teal and White: Show your solidarity by donning teal and white attire, accessories, or ribbons. Bonus points if you join us on Tuesdays throughout the month (or year). Use hashtags #Cervivor #CervicalCancer #TealandWhiteTuesday.
  • Get Involved: Participate in local events, fundraisers, or awareness campaigns.
  • Fundraise or Donate: Support Cervivor’s mission and programs, helping us amplify patient voices and create a cervical cancer-free future.

This month, we’ll rise as a collective force, ensuring that every individual affected by cervical cancer receives the support, resources, and care they deserve. Join us in this critical effort, and let’s make a difference – one voice at a time.

Get involved today and help us create a future where no one faces cervical cancer alone!

Celebrating Our Inspiring Founder and Chief Visionary, Tamika Felder!

Today, we come together as the Cervivor community to celebrate an incredible woman whose vision, strength, and dedication have changed countless lives. Please join us in wishing a very Happy Birthday to our Founder and Chief Visionary, Tamika Felder!

Tamika, your journey from a cervical cancer survivor to an outspoken advocate — a “cancer rebel” for cervical cancer awareness and prevention is nothing short of awe-inspiring. Your personal story, filled with courage and resilience, has been a guiding source of hope and empowerment for so many. Through Cervivor, you have created a space where survivors can share their experiences, find support, and educate others about the importance of cervical cancer screening and prevention.

On this special day, we want to acknowledge and appreciate the countless hours you have devoted to this cause. Your tireless efforts to spread awareness, advocate for better healthcare, and support those affected by cervical cancer have made a significant impact on our community and beyond. Your leadership has transformed Cervivor into a powerful movement that continues to inspire and save lives.

Your commitment to breaking the stigma around cervical cancer and advocating for HPV vaccination and regular screenings has not only raised awareness but has also led to actionable change. Your voice has reached people all over the world, providing them with the knowledge and courage to take charge of their health.

As we celebrate you today, we also celebrate the legacy you are building. Cervivor is not just an organization; it is a testament to your passion and dedication. Through educational programs, survivor stories, and advocacy efforts, you have created a lasting impact that will continue to empower and educate future generations.

On behalf of the entire Cervivor community, we wish you a very Happy Birthday, Tamika! May your day be filled with joy, love, and the same boundless energy and positivity that you bring to all of us. Here’s to many more years of health, happiness, and continued success in all your endeavors. With gratitude and admiration, The Cervivor Community.

Join us in celebrating Tamika today by making a donation at https://cervivor.org/donate/. 

Uniting to End Cancer Disparities for All

Every year, during the third week of June, communities across the United States come together to observe National Black Family Cancer Awareness Week. This important week, spearheaded by the U.S. Food and Drug Administration’s (FDA) Oncology Center of Excellence, aims to raise awareness about the disproportionate impact of cancer on Black families and to promote cancer prevention, screening, and treatment within this community.

Understanding the Disparities
Cancer affects all demographics, but statistics reveal a troubling disparity: Black Americans are more likely to develop and die from cancer compared to other racial and ethnic groups.

The reasons for this disparity are multifaceted, involving socioeconomic factors, access to healthcare, environmental exposures, and genetic predispositions.

National Black Family Cancer Awareness Week is designed to address these disparities by:

  1. Promoting Education and Awareness: Increasing awareness about the higher cancer risks faced by Black families encourages proactive health measures. Understanding the importance of early detection and regular screenings can significantly improve survival rates.
  1. Highlighting Preventative Measures: Educating the community about lifestyle choices that can reduce cancer risk, such as maintaining a healthy diet, regular physical activity, and avoiding tobacco and excessive alcohol use, is crucial.
  1. Encouraging Participation in Clinical Trials: There is a significant underrepresentation of Black Americans in clinical trials, which can hinder the development of effective treatments for this demographic. National Black Family Cancer Awareness Week seeks to increase awareness and participation in these trials, ensuring that new treatments are tested for efficacy across diverse populations.

Community Engagement
One of the most impactful aspects of National Black Family Cancer Awareness Week is its focus on community involvement.

Tamika Felder, Founder & Chief Visionary and Kimberly Williams, Chief Diversity Equity and Inclusion Officer, Charleston, SC
Tiera Wade, Cervivor Ambassador, Akron, OH

Local organizations, healthcare providers, and advocates host a variety of events and initiatives to engage the community, such as:

  • Health Fairs and Screenings: Offering free or low-cost cancer screenings and health check-ups to encourage early detection.
  • Educational Workshops: Providing information on cancer prevention, treatment options, and the importance of regular medical check-ups.
  • Support Groups and Counseling Services: Creating spaces for those affected by cancer to share their experiences, receive support, and find resources.

Real Stories, Real Impact
Hearing from individuals who have been affected by cancer can be incredibly powerful. Testimonials from cancer survivors, family members, and healthcare providers highlight the real-life impact of cancer within the Black community. These stories create solidarity and provide hope, reminding us that we are not alone in this fight.

Taking Action
Here are some ways you can get involved in National Black Family Cancer Awareness Week:

  1. Spread the Word: Use social media platforms to share information and resources. The hashtags #Cervivor #CervivorNoir #BlackFamCan #EndCervicalCancer are a great way to join the conversation and reach a wider audience.
  2. Participate in Local Events: Attend health fairs, workshops, and other events in your community. Encourage friends and family to join you.
  1. Volunteer: Offer your time to local organizations that are hosting events or providing support services.
  1. Get Screened: If you haven’t already, schedule a cancer screening. Encourage your loved ones to do the same. The hashtag #Screen4Me is a great way to spread awareness and share the importance of screening.

National Black Family Cancer Awareness Week is more than just a week of activities; it’s a call to action for year-round commitment to addressing and reducing the impact of cancer on Black families. By coming together, we can make significant strides in education, prevention, and treatment, ultimately saving lives and creating healthier communities.

Cervivor Community Members and Cervical Cancer Survivors (Left to Right): Keesha Carter, Gwendolyn Jackson, and Lindsay Gullatte-Lee

As we observe National Black Family Cancer Awareness Week, let’s remember that awareness and action go hand in hand. Together, we can create a future where cancer disparities are a thing of the past, and every family has the knowledge and resources to fight cancer effectively.

Honoring the Legacy of Professor Lynette Denny

It is with profound sadness and a deep sense of loss that we, the community of Cervivor, Inc., join in mourning the passing of Professor Lynette Denny.

A devoted individual in the mission to end cervical cancer, Professor Denny’s contributions to women’s health, particularly in low-resource settings, have left a lasting mark on the world.

As the Chair and Professor of Obstetrics & Gynaecology and a registered sub-specialist in gynecological oncology at Groote Schuur Hospital and the University of Cape Town, Professor Denny dedicated her life to improving the quality of life for women globally. Her passion for preventing cervical cancer was evident in her extensive research over the past 15 years, culminating in over 100 peer-reviewed papers. Her insights and findings have guided countless healthcare professionals and researchers in their quest to eradicate this preventable disease.

Professor Denny was a wealth of knowledge and inspiration, gracing numerous international conferences as a keynote speaker. Her expertise and commitment were recognized by many prestigious awards, including the “Distinguished Scientist for Improving the Quality of Life of Women” by the South African Department of Science and Technology in 2006, the Shoprite Checkers SABC 2 “Women of the Year” award for Science and Technology in 2004, and the South African Medical Association award for “Extraordinary Service to Medicine” in 2012. Her accolades also include a Fellowship ad eudeum by the Royal College of Obstetrics and Gynaecology in the United Kingdom and the British Society of Colposcopy and Cervical Pathology Founders’ Medal in 2014.

In March 2015, Professor Denny’s outstanding work was further recognized with the SA Medical Research Council award for a Cancer Research Centre project, reflecting her leadership in the SAMRC/UCT Gynaecological Cancer Research Centre. Her efforts were also acknowledged by the CANSA AG Oettle Memorial Award and the International Federation of Gynaecology and Obstetrics (FIGO) Award in 2015, as well as the International Agency for Research on Cancer (IARC) Medal of Honour Award in 2016.

As the immediate Past President of IGCS and immediate Past Chair of the FIGO Gynaecologic Cancer Committee, Professor Denny’s influence extended far and wide. Her collaborative spirit and ability to secure substantial funding for innovative research have paved the way for future breakthroughs in cancer prevention and treatment.

Professor Denny’s legacy is not only etched in her scientific achievements but also in the countless lives she touched and improved through her work. Her dedication, compassion, and tireless efforts have created a brighter future for women worldwide, particularly those in disadvantaged communities.

In remembering Professor Lynette Denny, we honor a true pioneer, a dedicated researcher, and a compassionate advocate for women’s health. Her legacy will continue to inspire and guide us in our mission to prevent cervical cancer and support those affected by it. We extend our deepest condolences to her family, friends, colleagues, and all who were fortunate to know and work with her.

Rest in peace, Professor Denny. Your light will continue to shine brightly in our hearts and in the ongoing mission to end cervical cancer.

Team Cervivor Attends ASCO 2024

The American Society of Clinical Oncology (ASCO) Annual Meeting is a premier event in the oncology community, gathering thousands of professionals from around the globe to discuss groundbreaking research, innovative treatments, and the future of cancer care. This year, Team Cervivor attended ASCO 2024, marking a significant milestone for our organization and highlighting the critical role of patient advocates in the fight against cancer.

What is ASCO?
ASCO, founded in 1964, is a leading professional organization for physicians and oncology professionals. Its mission is to conquer cancer through research, education, and the promotion of the highest quality patient care. The annual ASCO meeting is the largest of its kind, offering a platform for the latest scientific advancements, policy discussions, and networking opportunities. Attendees include oncologists, researchers, pharmaceutical representatives, and patient advocates, all united in their dedication to improving cancer care.

Our presence at ASCO 2024 was a testament to the growing recognition of the importance of patient voices in shaping cancer care and research. Here’s why our participation matters:

  1. Amplifying Patient Voices: As patient advocates, we bring the perspectives and experiences of those directly affected by cervical cancer. Our stories and insights are invaluable in guiding research priorities and improving patient care practices.
  2. Cultivating Collaboration: Attending ASCO allows us to collaborate with researchers, clinicians, and other advocacy groups. These interactions help us stay informed about the latest advancements and ensure that patient needs are at the forefront of scientific discussions.
  3. Promoting Awareness and Education: By engaging with the oncology community, we can spread awareness about cervical cancer, highlight the importance of prevention and early detection, and share our educational resources. Our presence at ASCO reinforces the message that cervical cancer is preventable and treatable when caught early.
  1. Influencing Policy and Research: Our participation at ASCO provides opportunities to advocate for policies that benefit cervical cancer patients and survivors. We can also contribute to shaping research agendas by emphasizing areas that require more attention, such as disparities in cancer care and the psychosocial impacts of the disease.

Team Cervivor Listed from Left to Right: Morgan Newman, MSW, Community Engagement Liaison; Tamika Felder, Founder & Chief Visionary; and Kimberly Williams, MHCM, Chief Diversity Equity & Inclusion Officer

Highlights from ASCO 2024
ASCO 2024 was a whirlwind of inspiring sessions, groundbreaking research presentations, and meaningful interactions. Here are some highlights from our experience:

– Networking Opportunities: We connected with oncologists, researchers, and fellow advocates, nurturing relationships that will strengthen our advocacy efforts. These connections are crucial for creating a supportive network dedicated to cervical cancer eradication.

– Media and Outreach: We participated in interviews, highlighting the importance of patient advocacy and the work we do. These media opportunities allowed us to reach a broader audience and amplify our message.

We also had the honor of having our Founder and Chief Visionary, Tamika Felder, speak on a crucial panel titled, “Bridging the Gap in Cancer Care for Adolescents and Young Adults” hosted by The Atlantic. This enlightening session shed light on the challenges faced by the nearly 1.5 million adolescents and young adults diagnosed with cancer each year. Addressing issues such as work, health insurance, school, fertility, and emotional distress, the panel explored the unique cancer biology of this age group and the lack of survival improvements compared to other age demographics. Tamika, alongside other survivors, oncologists, and advocates, shared her journey and insights, emphasizing the importance of tailored care and pioneering local programs that support the distinct needs of young cancer patients. Her participation underscored Team Cervivor’s commitment to advocating for comprehensive and compassionate cancer care for all age groups.

Attending ASCO 2024 was more than just an opportunity to learn and network; it was a chance to reaffirm our commitment to the mission to end cervical cancer. We left the conference inspired and energized, ready to continue our mission with renewed vigor. Our presence at ASCO underscores the vital role of patient advocates in the oncology community, and we are proud to be a voice for cervical cancer patients and survivors worldwide.

As we move forward, we will leverage the knowledge and connections gained at ASCO to enhance our educational programs, support initiatives, and advocacy efforts. Together, we can make a difference in the lives of those affected by cervical cancer and work towards a future free of this preventable disease. Stay tuned for more updates from Team Cervivor and join us in our journey to eradicate cervical cancer. Together, we are stronger, and together, we can achieve a world without cervical cancer.

Embracing Resilience: Celebrating Survivors, Heritage, and Pride This June

As June dawns upon us, it brings with it a vast spectrum of significance to our community, weaving together the threads of awareness, diversity, resilience, and celebration. This month, we commemorate not just one, but three vital observances: National Cancer Survivors Month, Caribbean Heritage Month, and Pride Month. The community at Cervivor embraces the intersectionality of these occasions and honors the strength, courage, and vibrancy of those who embody their spirit. Read along with us as we navigate each thread.

National Cancer Survivors Month serves as a reminder of the estimated 20 million worldwide who have confronted the harrowing journey of cancer diagnosis and treatment. It’s a time to celebrate the resilience of survivors, who navigate through the storm of uncertainty with unwavering resolve. Each survivor’s story is a testament to strength, reminding us that hope can thrive even in the face of adversity.

Within the realm of cancer survivors, there exists a rich diversity, reflective of the world’s cultures and identities. This June, we also celebrate Caribbean Heritage Month, paying homage to the vibrant traditions, flavors, and rhythms of the Caribbean diaspora. From the sun-kissed beaches to the pulsating beats of Calypso and Reggae, the Caribbean exudes a spirit of resilience ingrained in its history of triumph over adversity. In honoring Caribbean heritage, we recognize the strength and unity cultivated by communities in the face of challenges, a resilience mirrored in the journey of cancer survivors.

Moreover, as we embrace the mosaic of identities that enrich our world, we also commemorate Pride Month, a time to celebrate the LGBTQIA+ community’s courage, diversity, and resilience. LGBTQIA+ individuals facing cancer diagnoses often navigate unique challenges, from concerns about discrimination in healthcare to seeking inclusive support networks. Pride Month serves as a crucial time for visibility and acceptance, creating a culture of empowerment, inclusivity, and support for all those affected by cancer, regardless of sexual orientation or gender identity.

At Cervivor, we understand the power of community, support, and solidarity in the face of adversity. Our mission transcends borders and boundaries, embracing individuals from all walks of life, united by the shared experience of cervical cancer. Through advocacy, education, and support, we strive to empower survivors, caregivers, and allies to navigate their journey with courage and resilience.

As we reflect on the significance of National Cancer Survivors Month, Caribbean Heritage Month, and Pride Month, let us honor the resilience, diversity, and strength that define our collective human experience. Together, we stand as a testament to the indomitable spirit of the human soul, capable of overcoming even the darkest of storms with unwavering grace and resilience.

For more content, follow the main Cervivor pages across our social media platforms here.

Breaking The Silence: Mental Health and Cervical Cancer

Cervical cancer affects thousands of individuals worldwide every year, striking at the very core of their physical and emotional well-being. Beyond the physical toll, the mental health implications of this disease can be intense and often overlooked. As we shed light on Mental Health Awareness Month, it’s crucial to acknowledge and address the unique challenges faced by cervical cancer patients and survivors.

Receiving a cervical cancer diagnosis can unleash a whirlwind of emotions—fear, disbelief, anger, and sadness to name a few. Suddenly, life takes an unexpected turn, and individuals are thrust into a world of medical appointments, treatments, and uncertainties about their future. The shock of diagnosis alone can trigger anxiety and depression, leaving many feeling overwhelmed and vulnerable.

The journey through treatment is no less taxing. There is no “one-size-fits-all” when it comes to treatment. From surgery and chemotherapy to radiation therapy, each step comes with its own set of physical and emotional challenges. Coping with the side effects of treatment, such as fatigue, pain, and nausea, can take a toll on one’s mental well-being, often leading to feelings of isolation and despair. Danielle shares her reflections on navigating the difficulties of a cervical cancer diagnosis and beyond.

Cervical cancer treatments can also greatly impact body image and intimacy. Surgeries and radiation therapy may result in changes to physical appearance, including weight loss, scarring, and an invisible change with loss of fertility, which can shatter one’s sense of self-esteem and femininity. The fear of sexual dysfunction and intimacy issues post-treatment can strain relationships and further exacerbate feelings of isolation, shame, and inadequacy.

Even after successful treatment, the emotional scars of cervical cancer linger. Survivors often grapple with survivor’s guilt, anxiety about recurrence, and the long-term physical and psychological effects of cancer and its treatments. The transition to survivorship can be a challenging period marked by a mix of gratitude for life, survivor guilt, and the lingering trauma of the cancer experience. Read how Kyana found support and what she found helpful for self-care.

In the face of these challenges, it’s crucial to break the silence surrounding mental health and cervical cancer. By hosting an open dialogue and raising awareness, we can shatter the stigma associated with mental health struggles and create a supportive environment for those affected by cervical cancer. Support networks play a pivotal role in the mental well-being of cervical cancer patients and survivors. Whether through peer support groups like our monthly Creating Connections, professional counseling services, or private online communities like I’m a Cervivor, connecting with others who understand their experiences can provide much-needed validation, comfort, and hope.

Additionally, healthcare providers play a vital role in addressing the mental health needs of cervical cancer patients and survivors. By integrating psychosocial support into cancer care, healthcare teams can offer comprehensive care that addresses both the physical and emotional aspects of the disease. Check out a few community partners and resources below:

As we observe Mental Health Awareness Month, we stand in solidarity with cervical cancer patients and survivors–amplifying their voices, validating their experiences, and advocating for comprehensive support services that address their unique mental health needs. We can empower resilience, cultivate hope, and pave the way for a future where mental health is prioritized and no one faces the journey of cervical cancer alone, afraid, or ashamed.

The Vital Role of Clinical Trials

May marks a significant occasion in the medical community: National Clinical Trials Month and National Clinical Trials Day [May 20th]. It’s a time to recognize the invaluable contributions of clinical research to the advancement of healthcare. This month, as we acknowledge the progress made in various fields, let’s focus our attention on the critical role clinical trials play in ending cervical cancer—a disease that affects thousands of individuals worldwide. 

The Importance of Clinical Trials in Ending Cervical Cancer
Cervical cancer remains a global health emergency, claiming hundreds of thousands of lives each year. Despite advancements in screening and prevention as well as through vaccines, many individuals still succumb to this preventable disease. Clinical trials serve as the cornerstone of progress in cervical cancer research. They provide a platform for testing new treatments, improving existing therapies, and enhancing our understanding of the disease’s biology.

In recent years, clinical trials have led to groundbreaking discoveries in cervical cancer treatment. From targeted therapies to immunotherapies, these trials have expanded treatment options, offering hope to patients who previously had limited choices. Moreover, clinical research has paved the way for personalized medicine approaches, allowing healthcare providers to tailor treatments based on individual patient characteristics, ultimately improving outcomes and reducing the various side effects.

The Role of Participation
Active participation in clinical trials is crucial for accelerating progress in cervical cancer research. Patients who enroll in trials not only gain access to cutting-edge treatments but also contribute to the collective knowledge that drives medical innovation. Each participant plays a vital role in advancing scientific understanding, ultimately benefiting future generations of patients.

Participating in a clinical trial can be a deeply personal decision, influenced by various factors such as medical history, treatment preferences, and access to care. However, it’s essential to recognize the potential impact of participation, both on an individual level and within the broader context of public health. By joining a trial, patients not only receive advanced care but also become partners in the quest to end cervical cancer once and for all.

Addressing Barriers to Participation
Despite the critical importance of clinical trials, several barriers exist that hinder participation. These may include lack of awareness, logistical challenges, concerns about safety, and disparities in access to healthcare. Overcoming these barriers requires efforts from healthcare providers, researchers, policymakers, patient advocates, and the community at large.

Education and outreach efforts are essential for raising awareness about clinical trials and dispelling misconceptions. Providing clear information about the purpose, risks, and benefits of trials empowers patients to make informed decisions about their participation. Moreover, initiatives to address logistical barriers, such as transportation assistance, financial support, and flexible scheduling, can enhance access to trials for diverse populations.

As we observe National Clinical Trials Month and National Clinical Trials Day, let’s reaffirm our commitment to advancing cervical cancer research through participation in clinical trials. Together, we can drive innovation, improve treatment options, and ultimately work towards the elimination of this devastating disease. Every contribution, no matter how small, brings us closer to our shared goal of a world free from cervical cancer. Let us stand united in the mission, embracing the hope that clinical trials offer for a brighter, healthier future.

Have you been on or are currently on a clinical trial? Are you willing to share your personal experience? We would love to hear from you! Email us today at [email protected].

Honors in Advocacy for our Leaders in the Mission to End Cervical Cancer

In the relentless mission to end cervical cancer, every victory, every recognition, is a puzzle piece of hope, a testament to the dedication of those who tirelessly advocate for progress. Today, we are honored and humbled to celebrate the remarkable achievements of three extraordinary individuals who have devoted their lives to championing the cause of cancer patients, survivors, and advocates.

Tamika Felder, Founder & Chief Visionary

At the forefront of our celebration is Tamika Felder, our Founder and Chief Visionary, whose journey from patient to nonprofit founder has been nothing short of inspiring. In 2001, Tamika faced a daunting diagnosis of cervical cancer, a moment that would change her life forever. Determined to turn her personal struggle into a source of strength for others, Tamika founded Cervivor in 2005, an organization dedicated to educating and empowering cervical cancer patients and survivors to share their stories and make a difference.

For the past 19 years, Tamika has been a trailblazer in the mission to end cervical cancer, always advocating for the voices of patients and survivors to be heard. Her commitment and relentless efforts have earned her the incredible honor of being appointed to the National Cancer Advisory Board by President Joe Biden. This appointment is not only a testament to Tamika’s extraordinary leadership but also a recognition of the vital role that she and Cervivor play in shaping the future of cancer research, treatment, and prevention.

The National Cancer Advisory Board plays a crucial role in guiding the Director of the National Cancer Institute in setting the course for the national cancer research program. As we work towards President Biden’s ambitious goal of ending cancer as we know it through initiatives like the Cancer Moonshot, Tamika’s appointment ensures that the voices of cervical cancer patients and survivors will be heard loud and clear at the highest levels of decision-making.

Morgan Newman, MSW, Community Engagement Liaison

We are also thrilled to celebrate the achievements of Morgan Newman, our Community Engagement Liaison, who has been selected as a patient advocate member for the National Cancer Institute (NCI) Gynecologic Cancer Steering Committee (GCSC) Cervical Task Force (CTF). Morgan’s dedication to ensuring that patient voices are integrated into the development and evaluation of clinical trials is truly commendable. Through her involvement in these committees, Morgan is helping to shape the future of gynecologic cancer research and treatment, ensuring that the needs and perspectives of patients are always front and center.

Kimberly Williams, MHCM, Chief Diversity Equity & Inclusion Officer

Last but certainly not least, we extend our heartfelt congratulations to Kimberly Williams, our Chief Diversity Equity and Inclusion Officer, for her continuous role as a patient advocate member for the Cervix/Vulva Cancer Committee for NRG Oncology. Kimberly’s tireless advocacy efforts have been instrumental in improving the clinical research process and ensuring that patient perspectives are always prioritized. Her recent appointment to the Diversity, Equity, and Inclusion Committee further underscores her commitment to advancing equity and inclusion in cancer research and treatment for all.

As we celebrate these remarkable achievements, we are reminded of the power of advocacy and the incredible impact that individuals like Tamika, Morgan, and Kimberly can have in the mission to end cervical cancer. Their dedication, passion, and advocacy serve as an inspiration to us all, and we are proud to stand alongside them in the quest for a world free from cervical cancer.

To learn more about Tamika Felder’s appointment to the National Cancer Advisory Board, please see the official press release from the White House [here].

Celebrating National Women’s Health Week 2024

This year National Women’s Health Week takes place from May 12th to the 18th. This particular week we highlight women’s health issues and priorities. We encourage women to engage in healthy practices, and preventive care. This year’s theme is “Empowering Women, Cultivating Health: Celebrating Voices, Health, and Resilience.” Why? Because women need to feel empowered to make their physical and well-being a priority. This includes making sure you get all the screenings needed: preventive cancer screenings along with vision, and dental checkups. (P.S. Did you know our Founder and Chief Visionary, Tamika Felder serves as a Women’s Health Week Ambassador?)

As a certified Health, Fitness and Wellness Coach, I was present at a wellness conference where I first heard Dr. Rudolph E. Tanzi, a professor of Neurology at Harvard University, Director of the Genetics and Aging Research Unit, Co-Director of the Henry and Allison McCance Center for Brain Health at Massachusetts General Hospital, and a bestselling author.

Dr. Tanzi created the “S.H.I.E.L.D. Plan”. This plan help us remember how to take care of our physical and mental health with the everyday steps you can take to preserve and promote your well-being. This plan really resonated with me, and I incorporated these steps into my daily life. I also teach it to my clients, to my students, and I hope it will help you too.

S.H.I.E.L.D. is an acronym that stands for the following: (not necessarily in this order)

S – Sleep. You must try to sleep at least 7-8 hours at night. It is during this time that the body repairs, allowing healing and restoration to occur. Lack of sleep is associated with negative health effects. So in other words…get your snooze on.

H – Handle Your Stress. Yes! This is easier said than done, but we must try. Give yourself a break if you feel stressed out. Take deep breaths, stretch, or meditate. Stress is a known component to chronic diseases like diabetes, ulcers, and heart disease.

I – Interact With Others. Social connection with others can improve the ability to recover from stress, anxiety, and depression. In summary, human interaction is an essential part of life, and it has physical and mental benefits. A recent study found that people who experienced social isolation had a 32% higher risk of dying early.

E – Exercise. Ahhh! That’s something I know about. To be honest, throughout the years of being a fitness professional, I have learned not to even call it “exercise” but just plain and simple “moving the body”. Most people when they hear the word “exercise” think about punishment to the body – it is far from the truth. Finding a movement that works for you is key. Starting small and working up to the recommended 150 minutes a week will give you so many benefits for your mind, your body, and your spirit.

L – Learn New Things. Dr. Tanzi states, “Practicing a new and challenging activity is a good bet for building and maintaining cognitive skills.” We can do this at any age. Learning new information can be as simple as trying a new recipe, reading or listening to a book, or taking a class online.

D – Diet. For most people, “diet” conjures up thoughts of deprivation and restriction. We feel that it is something that we must do or that we must punish ourselves for the crime of overeating. No matter what you think about diets, we ALL have one. A diet is simply a pattern of eating. Whatever health means to you, the right diet will support it. There is no one-size-fits-all model for dietary patterns and health.

Side Note: I would incorporate hydration here too. Drinking water is crucial for our bodies. The majority of adults do not hydrate themselves close to the recommended level. In fact, multiple studies report that 75% of adults in the U.S. suffer from chronic dehydration. As we age, your body’s thirst signal diminishes, so as a rule of thumb when you feel thirsty, you are already dehydrated. Please drink your water.

So there you have it – that is the “S.H.I.E.L.D Plan” – the daily steps that Dr. Tanzi believes will promote health and longevity! Ideally, you will incorporate these steps in your daily life, and they will become healthy habits.

If these six steps are too overwhelming all at once, which is understandable, take it slow and work one-step at a time. For example, focus on your sleep if you are not getting the recommended hours. After you improve that, then work on the next step, and so on. It is never too late to incorporate these steps. Never too late to start anything. Believe me whatever you do consistently, it will make a difference on your well-being. Do not give up!

Patti Murillo-Casa is a Cervivor Ambassador and Cervivor’s Health and Wellness Coach who manages Survivor Slimdown Facebook Group (Open to any cancer survivor). She also co-leads Cervivor Español. Patti is a retired NYPD police officer and a 15-year cervical cancer survivor. She resides in NYC with her husband of 25 years where she is a Groups Fitness Instructor, Cancer Exercise Specialist and a Health Advocate and Educator.

A May To Remember

As May unfolds its vibrant colors and warmer days, it brings with it a variety of celebrations, honoring rich cultures and invaluable professions. It’s a month of recognition, reflection, and appreciation. In this blog post, we recognize the significance of Asian American and Pacific Islander Heritage Month, culminating in the heartfelt acknowledgment of National Nurses Week and National Oncology Nurses Month.

Asian American and Pacific Islander Heritage Month
May marks a special time to celebrate the diverse cultures, traditions, and contributions of Asian Americans and Pacific Islanders (AAPI) in the United States. It’s a time to honor the resilience, achievements, and rich heritage of these communities that have shaped the very fabric of American society. 

From the vibrant festivals and cuisines to the profound contributions in arts, science, technology, and beyond, the AAPI community has left a mark on every aspect of American life. It’s a moment to reflect on their journeys, triumphs, and ongoing struggles, cultivating understanding, respect, and unity.

Sharing cervical cancer stories among Asian American and Pacific Islanders (AAPI) is vital for creating an open dialogue that transcends generations. By sharing their experiences, AAPI individuals not only break the silence surrounding cervical cancer within their communities but also dismantle cultural taboos and stigmas associated with discussing health issues openly. 

Through storytelling, they can address unique challenges, such as language barriers, cultural beliefs, and access to healthcare, which may affect prevention, diagnosis, and treatment. By amplifying their voices, AAPI individuals empower others to prioritize their health, seek preventive care, and engage in informed discussions with healthcare providers. This open dialogue not only raises awareness but also paves the way for improved support networks, advocacy efforts, and healthcare policies tailored to the needs of AAPI communities, ultimately contributing to better health outcomes for future generations. 

National Nurses Week
Amidst the celebration of cultural diversity, May also holds a special place to honor those who epitomize compassion, care, and resilience – nurses. National Nurses Week, celebrated annually from May 6th to May 12th, pays tribute to the remarkable contributions of nurses to the healthcare sector and society at large.

Nurses are the heart and soul of healthcare, providing comfort, healing, and support to patients and families during their most vulnerable moments. Their dedication, sacrifice, and commitment often go unrecognized, yet their impact reverberates profoundly in the lives they touch. If you would like to honor your nurse this month, send us an email at [email protected] with a photo and/or a written shoutout.

National Oncology Nurses Month
In the same vein, May also shines a spotlight on a group of healthcare professionals who provide exceptional care to individuals enduring cancer. National Oncology Nurses Month recognizes the invaluable role of oncology nurses in delivering comprehensive, compassionate, and personalized care to cancer patients.

These dedicated professionals navigate the complex terrain of cancer treatment with grace, empathy, and expertise, offering not just medical support but also emotional and psychological solace to patients and their loved ones. Their tireless efforts and boundless compassion make a tangible difference in the lives of those affected by cancer.

As we traverse through May, let us embrace the spirit of celebration, gratitude, and solidarity. Let us honor the rich tapestry of Asian American and Pacific Islander heritage, celebrating diversity and cultivating a community rooted in inclusivity. Simultaneously, let us extend our deepest appreciation to the nurses – the unsung heroes of healthcare, whose selflessness and dedication inspire us all. Whether it’s through cultural appreciation or healthcare acknowledgment, May offers us all the opportunity to reflect on how diversity and dedication enrich our lives and communities.

Reflecting On 15 Years Cancer-Free

Every year, on May 5, also known as “Cinco de Mayo”, I celebrate my cancerversary. This year I am celebrating 15 years of being cancer-free. Wow! Let me take that in just a few more seconds – 15 years! – What a blessing. Fifteen years is a big milestone for me. It is a milestone that I thought I would never reach, but here we are.  

I was diagnosed with cervical cancer stage IIB just 3 months after I retired from the New York City Police Department after being a police officer for 20 years. After I retired, my husband and I were ready to enjoy our lives. However, some plans do not happen when we want them to happen. 

My world went dark as soon as I heard “You have cancer”. I did not see the possibility of being here 15 years later. My journey was difficult, to say the least. After 7 treatments of chemotherapy, 35 treatments of external radiation, and 2 treatments of internal radiation (brachytherapy) I was lucky enough to come out on the other side.

I must be honest and say that even when my doctor said I was “cancer-free” I felt lost. Everything was still dark. I did not know what to do. Yes! I was grateful, but I did not recognize myself. I did not know the woman staring at me in front of the mirror. She was not the woman I was before. 

Cancer for sure changed my life forever. It took time to put the pieces back together. It is definitely a slow process. Most people think that when you are cancer-free you can pick up where you left off. This is further from the truth. You become a different person. 

It has been a journey of highs and lows while re-inventing myself. I can look at the negative side and say my body has changed, and even after 15 years, there is still the fear of cancer coming back. I live with the physical and mental scars this monster left me. I deal with the many secondary effects of my treatments, and I can go on with so many other things, but I will not. 

I focus on being positive and grateful for every single day. I choose to live every day like it will be my last, but if it is not – I drop to my knees and give thanks. I embrace the good, the bad, and the in-between. It is all part of my gift of life.

Today, I am grateful that I am also part of an extraordinary cervical cancer community. A community of women woven together. We lean on one another, learn from one another, celebrate together, and grieve together when we lose one of our own. I have met women who are courageous, strong, determined, and supportive. Women who have personally inspired and motivated me to make my survivorship count by becoming an advocate of this disease to help other women. 

Therefore, before I end this– I want to remind women to get their cervical cancer screenings and to vaccinate their children (both boys and girls) with the HPV vaccine to protect them from six different cancers linked to the human papillomavirus. Let us protect the next generation.  

Now, let us celebrate today – have a margarita in my name if you wish, but my true wish is for you to consider donating $15 to Cervivor. Please support our mission to educate, and support women with this disease, and end cervical cancer. This is within our reach. 

Patti Murillo-Casa is a Cervivor Ambassador and Cervivor’s Health and Wellness Coach who manages the Survivor Slimdown Facebook Group. She also co-leads Cervivor Español. Patti is a retired NYPD police officer and a 15-year cervical cancer survivor. She resides in NYC with her husband of 25 years where she is a Group Fitness Instructor, Cancer Exercise Specialist, and Health Advocate. 

Celebrating Diversity Every Day Of The Year

April is Celebrate Diversity Month—a dedicated time to recognize and honor the rich dimensions of diversity within our global communities. At Cervivor, Inc., while we spotlight this month with dedicated enthusiasm, our commitment to embracing and promoting diversity extends far beyond April. It is woven into the very fabric of our mission and activities throughout the entire year.

Why Diversity Matters to Us
At Cervivor, Inc., our work centers on cervical cancer awareness and education, areas where the disparities in health outcomes are stark. These disparities are often shaped by diverse ethnic, racial, and socioeconomic backgrounds. Acknowledging and addressing these differences is crucial in our fight against cervical cancer.

Diversity isn’t just about recognizing the varied backgrounds of the people we serve; it’s also about ensuring that everyone—regardless of their race, ethnicity, age, disability, sexual orientation, or socioeconomic status—has access to the knowledge and healthcare resources they need to prevent and fight cervical cancer.

Get Involved:

1. Education Tailored to Needs – We strive to tailor our educational content and outreach to meet the diverse needs of the global communities we serve. This involves creating materials in multiple languages, considering cultural sensitivities, and providing resources that are accessible to all, regardless of their educational background or health literacy levels. Check out our Educational Materials section here!

2. Diverse Voices and Stories – Our advocacy is built on the stories of real people across the globe who have faced cervical cancer. These stories are powerful, not only for the emotional and personal truths they convey but also because they reflect a spectrum of experiences across different communities. By amplifying diverse voices, we bring greater awareness to the unique challenges faced by different groups and foster a more inclusive conversation about health. Join the mission of Cervivor and share your story today.

3. Partnerships and Community Engagement – Building strong partnerships with other global organizations that work with underrepresented groups is another way we ensure our message reaches as widely as possible. Through collaboration, we can address gaps in information and care that disproportionately impact certain communities. We thank them for being our Partners in Purpose.

4. Training and Volunteerism – We also focus on training a diverse group of advocates. Our volunteer advocates come from all walks of life, and all areas worldwide. They are essential to our mission and bring their unique perspectives and skills to our work, helping us reach more people more effectively. Are you looking for ways to volunteer? Sign up today!

5. Donate – Cervivor works tirelessly to ensure marginalized voices are heard, representation is valued, and opportunities are accessible to all. Your donation not only aids in the advancement of equality but also helps build stronger, more resilient communities where diversity is celebrated and embraced as a fundamental strength.

The Impact of Continued Diversity
The continued focus on diversity enriches our organization and improves the effectiveness of our outreach and education efforts. By understanding and integrating the varied perspectives and needs of the communities we serve, we can make a significant impact on reducing the incidence and mortality of cervical cancer.

Looking Beyond April
While Celebrate Diversity Month provides a great opportunity to highlight issues related to diversity, equity, and inclusion, at Cervivor, Inc., these values are integral to our daily operations. Every day of the year, we are committed to understanding and serving the needs of diverse global communities, ensuring equitable access to information and care, and reducing the health disparities that affect outcomes in cervical cancer.

We invite you to join us in this ongoing work. Whether through sharing information, volunteering, or participating in our programs, your support makes a vital difference. Together, we can ensure that every day is an opportunity to celebrate and nurture diversity, bringing us closer to a world where no one faces cervical cancer alone.

Let’s continue to celebrate diversity, not just this month but every single day, and make a lasting difference in the lives of all we serve.

Apply now for our upcoming Communities of Color Patient Advocacy Retreat and Cervivor School 2024!

Leaving Our Mark: National Infertility Awareness Week and the Cervical Cancer Community

This National Infertility Awareness Week (NIAW), we at Cervivor, Inc. are embracing the theme “Leave Your Mark” with a focus that is close to our hearts: the intersection of infertility and cervical cancer. From April 21-27, we unite under this banner, not only to raise awareness about infertility issues across the board but also to shed light on the specific challenges faced by those in the cervical cancer community.

The Intersection of Cervical Cancer and Infertility
Cervical cancer and its treatments often pose significant challenges to fertility, a fact that many of our community members know all too well. Treatments such as chemotherapy, radiation, and surgery can impact fertility, sometimes temporarily, and in many cases, permanently. This adds an additional layer of emotional and physical complexity to the cancer journey.

For many, the dream of motherhood remains strong, and the grief that accompanies the loss of fertility can be profound. This week, we want to acknowledge that grief, offer our support, and highlight the resources available for those navigating this difficult intersection.

How You Can “Leave Your Mark”
1. Wear Orange on April 24 – This year, wear orange on April 24 to stand in solidarity with those facing infertility. Orange represents a symbol of community hope and support, lighting the way forward amidst the challenges. Tag us and use hashtags #Cervivor, #CervicalCancer, and #LeaveYourMark.

2. Educate Yourself and Others – Take this week to learn more about the fertility challenges associated with cervical cancer treatments. Understanding these challenges can help you support friends, family members, or community members who are dealing with these issues.

3. Share Your Story – If you feel comfortable, share your story. Whether it’s on social media, our blog, our website, or within your circle of friends, talking about your experiences can help to destigmatize infertility issues and provide support to others going through similar struggles.

Use our hashtags #Cervivor, #CervicalCancer, and #LeaveYourMark to join the conversation.

4. Advocate for Fertility Preservation – One way to leave your mark is to advocate for better access to fertility preservation techniques and insurance coverage. These services are crucial for those undergoing treatments that may affect their reproductive health. Check out our amazing community partners over at the Alliance For Fertility Preservation to learn more.

5. Support Research and Charities – Support organizations that are working towards better treatments for cervical cancer and those addressing infertility. Cervivor has a newly established gift fund called the Virginia “Ginny” Marable Cervivor Baby Gift Fund to help those impacted by cervical cancer in their family planning. Your support can make a huge difference in advancing these services even further.

In Solidarity
During National Infertility Awareness Week, let’s come together to leave a lasting mark on the fight against infertility and the mission to end cervical cancer. By wearing orange, sharing our stories, and advocating for change, we can build a community that supports everyone, no matter where they are in their journey. 

Join us to #LeaveYourMark. Remember, your voice, your story, and your support matter now more than ever.

Thank you for standing with us,

The Team at Cervivor, Inc.

Advocating For Health Equity: National Minority Cancer Awareness Week

In the landscape of healthcare, awareness, and action are essential to address disparities that disproportionately affect marginalized communities. National Minority Cancer Awareness Week serves as a poignant reminder of the health inequities faced by populations historically marginalized, discriminated against, and excluded in American society. It’s a time to not only acknowledge these disparities but also to highlight organizations dedicated to promoting health equity. Among them is Cervivor, Inc., providing education, empowerment, and walking in purpose through advocacy to end cervical cancer.

A Call to Action: Under-represented communities in the United States often experience higher rates of cancer incidence and mortality, coupled with lower survival rates compared to the general population. These disparities are multifaceted, stemming from various factors such as socioeconomic status, lack of access to healthcare, cultural barriers, and systemic discrimination. National Minority Cancer Awareness Week, observed annually in April, provides an opportunity to shed light on these issues and mobilize efforts toward change. During this week, conversations around cancer prevention, early detection, and access to quality care are amplified, with a specific focus on underserved and under-represented communities. It’s a time for education, outreach, and advocacy to address the root causes of health disparities and ensure that all individuals, regardless of race, ethnicity, or socioeconomic background, have equitable access to healthcare resources.

Championing Health Equity: At the forefront of the mission to end cervical cancer and to close the gap in health disparities is Cervivor, Inc. Founded by 23-year cervical cancer survivor Tamika Felder, Cervivor is a non-profit organization dedicated to cervical cancer advocacy, support, and education. What sets Cervivor apart is its commitment to addressing the unique needs of marginalized communities, including communities of color, LGBTQIA+ individuals, rural residents, young adults, and those facing socioeconomic challenges.

Cervivor’s mission extends beyond raising awareness about cervical cancer; it’s about empowering individuals to become advocates for their own health and well-being. Through a combination of educational resources, support networks, and community outreach initiatives, Cervivor works tirelessly to ensure that no one is left behind in the mission to end cervical cancer. One of the cornerstones of Cervivor’s approach is its emphasis on health equity. Recognizing that marginalized communities often face barriers to accessing healthcare, Cervivor strives to bridge these gaps through targeted outreach programs, culturally sensitive resources, and partnerships with organizations that share its commitment to diversity, equity, and inclusion.

Embrace Inclusion: In addition to its focus on cervical cancer advocacy, Cervivor is also actively involved in promoting diversity, equity, and inclusion (DEI) within the healthcare sector.

Kimberly Williams

Through its DEI programming, Chief Diversity Equity and Inclusion Officer, Kimberly Williams and Team Cervivor aim to create a more inclusive healthcare environment where all individuals feel seen, heard, and valued. This includes initiatives to address disparities in cancer care, such as advocating for culturally competent healthcare providers, promoting LGBTQIA+ inclusivity in cancer support services, and raising awareness about the unique needs of minority communities. By spotlighting DEI issues within the healthcare sector, Cervivor is helping cultivate a more equitable and compassionate approach to cancer care. Through collaboration, education, and advocacy, Cervivor is making strides toward a future where everyone has equal access to the resources and support they need to live healthy, fulfilling lives.

Towards a Future of Health Equity: As we observe National Minority Cancer Awareness Week and shine a spotlight on organizations like Cervivor, Inc., it’s crucial to recognize that achieving health equity is a collective responsibility. It requires ongoing commitment, collaboration, and action at all levels of society – from policymakers and healthcare providers to community organizations and individuals. By raising awareness about health disparities, advocating for marginalized communities, and promoting diversity, equity, and inclusion in healthcare, we can work towards a future where everyone has the opportunity to thrive, regardless of their background or circumstances.

Let’s honor the spirit of National Minority Cancer Awareness Week by redoubling our efforts to create a world where health equity is not just a goal, but a reality for all.

Reflections From World Health Day: Bridging The Gap in Cancer Across The Globe

On World Health Day, April 7th, we came together under the banner of “My Health, My Right,” echoing a fundamental truth: access to quality healthcare is a basic human right. However, as we reflect on the day’s theme, it’s clear that this right is far from being universally realized, as disparities persist not only on a global scale but also within communities, even in countries like the United States, Canada, Scotland, and across Central America and Africa.

The fight against cervical cancer serves as a poignant example of the multifaceted challenges in healthcare accessibility. In Africa, the lack of resources, including broken machines and long waits for vital screenings, creates barriers to early detection and treatment. Despite the personal choices individuals may make regarding their health, they are often hindered by the absence of necessary tools and infrastructure. Jane was a patient seeking care for a routine physical. She happened to find a free screening clinic being offered at her local hospital. Her cervical cancer was detected and treated early due to access and timely screening. 

In the Caribbean, where the scenery is picturesque, the reality is harsh: limited access to comprehensive treatment options forces individuals to endure costly and emotionally draining journeys for essential treatments like radiation therapy. Countries like St. Lucia face the added burden of relying solely on chemotherapy, necessitating patients like Nymphia to seek radiation treatment abroad, adding layers of complexity to an already challenging situation.

Even in countries like Canada, where universal healthcare is a cornerstone, significant barriers persist, particularly for marginalized communities. Poverty, homelessness, and racism contribute to late-stage cancer diagnoses, resulting in poorer outcomes. Addressing modifiable barriers such as housing instability and limited health literacy is essential to ensure timely access to treatment for all Canadians.

Similarly, in Central America, including countries like Honduras, World Health Day serves as a reminder of the inherent right to healthcare. Despite recent progress, many barriers continue to hinder vulnerable groups and rural communities from accessing essential cervical cancer screenings. Challenges such as lack of awareness, stigma, financial constraints, and inadequate family support contribute to low screening rates, highlighting the need for targeted interventions. Karla is a cervical cancer survivor and patient advocate working to change the narrative.

Even in Scotland, a country with a robust healthcare system, cancer inequalities persist, with higher incidence and mortality rates in deprived areas. The disparity is stark, with cancer death rates being 74% higher in the most deprived populations compared to the least deprived. Urgent action is needed to dismantle barriers to early diagnosis and ensure equitable access to high-quality care across all communities. Cara was diagnosed with stage II cervical cancer after several doctors appointments originally addressing gastrointestinal and stress-related symptoms.   

As we reflect on World Health Day 2024, it’s evident that the journey towards equitable healthcare is ongoing and multifaceted. It requires not only addressing systemic issues but also dismantling barriers rooted in social determinants of health. Together, we must continue to advocate for universal access to quality healthcare, ensuring that “My Health, My Right” is a reality for all, regardless of geography or socioeconomic status.

To get involved and make a difference, community members and allies can:

  1. Advocate for policy changes that prioritize healthcare equity and address social determinants of health.
  2. Support organizations like Cervivor and initiatives working to improve access to healthcare services for underserved communities.
  3. Educate others about the importance of health equity and the impact of social determinants on health outcomes.
  4. Engage in community outreach and support initiatives that address healthcare disparities and promote wellness.
  5. Stay informed and involved in local and global health issues, amplifying the voices of marginalized communities.

Together, we can create a future where everyone has equal access to the healthcare they need and deserve. Let’s work towards a healthier, more equitable world for all.

Take Action and Spread Awareness

In a world brimming with causes and issues, it’s easy to feel overwhelmed, and unsure of how to make a difference. But fear not! Your voice matters, and your actions, no matter how small, can create waves of change. 

One initiative we are excited to be participating in is President Biden’s declaration of April as National Cancer Prevention and Early Detection Month. The proclamation carries profound significance for our Cervivor community, particularly our mission to eradicate cervical cancer. The re-ignition of the Cancer Moonshot initiative underscores the critical need to accelerate advancements in cervical cancer prevention, treatment, and early detection methods. 

For cervical cancer survivors, patients, and advocates, this proclamation reaffirms our commitment to advocating for accessible screenings, eliminating barriers to healthcare access, and raising awareness about the importance of early detection. With screening playing a pivotal role in detecting cervical abnormalities before they progress into cancerous lesions, this initiative aligns with our mission to empower individuals with knowledge, resources, and support in their journey against cervical cancer.  

This month, we’re urging you to join us and take action to spread awareness for this and other important initiatives. From advocating for health equity to supporting cancer awareness and vaccination efforts, there are countless ways to get involved and make a positive impact. So let’s come together as a community and harness our collective power to drive meaningful change.

National Minority Health Month: This month, let’s recognize the disparities in healthcare access and outcomes faced by communities of color communities. By raising awareness and advocating for equitable healthcare policies, we can work towards a healthier, more just society for all.

National Public Health Week (April 1st – 7th): Public health is everyone’s responsibility. During National Public Health Week, let’s celebrate the progress we’ve made in improving health outcomes and renew our commitment to addressing the underlying social, economic, and environmental factors that shape health.

National Adolescent and Young Adult Cancer Awareness Week (April 1st – 5th): Adolescents and young adults facing cancer often have unique needs and challenges. We’re using this week to raise awareness about AYA cancer issues, support those affected, and advocate for better research, treatment, and support services. Follow along with our social media platforms and check out our partners over at Stupid Cancer.

Adolescent Immunization Action Week (April 1st – 5th): Vaccines save lives, but immunization rates among adolescents are often lower than desired. This week, we’re highlighting the importance of adolescent immunizations and encouraging parents and caregivers to ensure their teens are up to date on recommended vaccines.

Here are five practical tips to get involved:

1) Utilize Social Media Platforms: Social media isn’t just for sharing selfies and pet videos. It’s a powerful tool for raising awareness and mobilizing communities. Share informative posts, engage in discussions, and use relevant hashtags to amplify your message. Need content? We’ve got you! Like, comment, and share directly from the Cervivor platforms or utilize our social media kit. You can find all of our handles at the bottom of our LinkTree page here.

2) Organize or Participate in Events and Activities: Whether it’s a fundraiser, a MeetUp, or an online event, getting involved in local events is a great way to make a tangible impact. Don’t wait for someone else to take the lead—be the change you wish to see! To join any upcoming events by Cervivor, visit our website.

3) Partner with Organizations: Collaborating with established organizations can give your efforts more reach and credibility. Consider teaming up with groups like Cervivor, which focuses on cervical cancer advocacy and support, to maximize your impact.

4) Engage with Media: Media coverage can shine a spotlight on important issues and spark meaningful conversations. Write letters to the editor, pitch stories to journalists, or even start your own blog or podcast to share stories and perspectives that need to be heard. Need some tips to get you started? We have a media kit for that!

5) Donate to Organizations Doing the Work: Financial support is crucial for organizations working tirelessly to create change. Even a small donation can make a big difference in funding research, providing support services, or advocating for policy changes.

Together, we have the power to create a better, healthier world. So let’s roll up our sleeves, use our voices, and take action for the causes we believe in. Whether it’s advocating for communities of color and their health, promoting public health initiatives, supporting adolescent and young adult cancer awareness, or championing adolescent immunizations, every effort counts. Let’s inspire change, be intentional and inclusive of all, and build a brighter future for generations to come. Thank you for joining us on this journey of advocacy and awareness where we know we can make a difference.

Cervical Cancer Survivors Turned Mothers Through Gestational Surrogacy

March is a month of significance for many, particularly within the Cervivor community. It marks Surrogacy Awareness Month, a time to shed light on an alternative path to parenthood that holds profound meaning for those whose fertility has been impacted by cervical cancer treatments like hysterectomy and radiation therapy. Gestational surrogacy is the most common form of surrogacy that involves a surrogate carrying a fetus not genetically related to her. This method allows individuals or couples to have a child using their own genetic material or that of a donor, while the surrogate provides the nurturing environment for the pregnancy.

Cervical cancer survivors like Ginny, Tamika, Gina, Anna, and Kate all have something in common. They have each embarked on unique journeys of resilience, hope, and motherhood through the remarkable path of gestational surrogacy. Their inspiring stories shed light on the triumph over challenges and the profound joy of becoming a mother beyond cervical cancer.

Ginny’s Journey
Ginny’s journey with cervical cancer was daunting, but her determination to become a mother never disappeared. Gestational surrogacy offered her a double dose of hope. With the support of her husband Sean, they embraced the path to parenthood, navigating the emotional ups and downs with grace. Today, Ginny cherishes every moment with her twin boys who celebrated their 3rd birthday. [Click here to watch Ginny’s Cervivor Story].

Tamika’s Path
At the young age of 25, Tamika received devastating news from her doctor: she was diagnosed with cervical cancer and faced the prospect of a life-saving radical hysterectomy, rendering childbirth extremely challenging. She never imagined that the option to have children would be taken away from her and for years she believed becoming a mother would never come true. Until one day, the most exceptional gift came from a woman she barely knew. [Read the Featured Article Here]

The surrogacy process is intricate, involving careful matching of surrogates with intended parents based on preferences and health criteria. Surrogacy agencies or programs often facilitate this matchmaking process, ensuring compatibility and support throughout the journey. Clear delineation of roles and responsibilities is essential in surrogacy arrangements. Surrogates have the autonomy to make health decisions during pregnancy and receive compensation for their invaluable contribution. Intended parents, on the other hand, assume the financial, legal, and medical obligations associated with the surrogacy journey.

Gina’s Grace
In 2016, Gina and her spouse, Dan, received the joyous news of expecting a baby, only to be met with the harsh reality of Gina’s cervical cancer diagnosis. Amidst this challenging time, the medical team at the University of Washington Medical Center played pivotal roles in saving her life not once, but twice. However, the treatments rendered Gina unable to conceive naturally. With hope and determination, Gina turned to social media, where her friend generously volunteered to become their gestational carrier. [Read More of Gina’s Story].

Anna’s Adventure
Anna, a resilient cervical cancer survivor, made a courageous decision with her husband, Soto in 2021 to undergo fertility preservation before embarking on her cancer treatments. Determined to preserve her dream of motherhood, she opted to freeze her embryos. Despite the uncertainties ahead, Anna held onto hope. In November 2023, her son entered the world through a gestational surrogate. Anna’s journey is a testament to the power of perseverance and the love of becoming a mother. [Read more of Anna’s Cervivor Story].

Kate’s North Star
In the same appointment where she received the sobering diagnosis of cervical cancer at 30, Kate was also informed that carrying children would be an impossibility. Her oncologist presented her with a glimmer of hope, outlining options for biological children through surrogacy in the future. Without hesitation, she embarked on the journey of invitro fertilization, resulting in the preservation of nine healthy embryos. Later, she and her husband Matt dove into the intricate world of surrogacy, navigating through the complexities with the guidance of an agency. The process proved to be arduous, lengthy, and financially daunting. [Read Kate’s Blog].

As we read in Kate’s story above, one of the significant barriers to surrogacy is its cost, which can range from $60,000 to $150,000, covering legal fees, medical expenses, surrogate compensation, and other miscellaneous costs. This financial burden can be overwhelming for many individuals and couples aspiring to parenthood. In January of this year, Cervivor, Inc. established The Virginia “Ginny” Marable Cervivor Baby Gift Fund: Supporting Your Path to Parenthood. Initiatives like the Virginia “Ginny” Marable Cervivor Baby Gift Fund aim to alleviate these financial barriers and make surrogacy accessible to all. By supporting this fund, donors contribute to removing obstacles and providing hope to those navigating the journey to parenthood.

The stories of Ginny, Tamika, Gina, Anna, and Kate serve as powerful reminders of the resilience of the human spirit and the transformative power of gestational surrogacy. Through adversity, they found hope. Through uncertainty, they found courage. And through it all, they discovered their pathway to parenthood. Their journeys inspire us all to embrace life’s challenges with grace and to celebrate its blessings with gratitude. This Surrogacy Awareness Month, let’s come together to celebrate the gift of surrogacy and support initiatives like the Virginia “Ginny” Marable Gift Fund. Through awareness, understanding, and collective action, we can ensure that everyone, regardless of financial means, has the opportunity to build the family they’ve always dreamed of. Let’s break down barriers and cultivate inclusivity to ensure that parenthood remains within reach for everyone.

Are you a cervical cancer patient or survivor and would like to share your surrogacy or pathway to parenthood story with us? Email us at [email protected]!

FOR IMMEDIATE RELEASE: Cervivor Mourns the Loss of Jessica Pettway to Cervical Cancer: Calls for Increased Advocacy

[Upper Marlboro, MD], March 22, 2024 – Cervivor, Inc., a leading advocacy organization dedicated to cervical cancer awareness, advocacy, and support, is deeply saddened by the passing of Jessica Pettway, a beloved beauty influencer, wife, and mother, who tragically lost her life to cervical cancer at the age of 36. Jessica’s story serves as a poignant reminder of the critical importance of early detection and accurate diagnosis in the mission to eliminate this preventable disease.

Jessica’s journey underscores the urgent need for increased awareness, education, and advocacy surrounding cervical cancer. Despite her efforts to seek medical attention, Jessica was initially misdiagnosed, with doctors dismissing her symptoms as “just a fibroid.” This devastating misdiagnosis delayed crucial treatment and ultimately cost Jessica her life.

During this difficult time, Cervivor extends its deepest condolences to Jessica’s family, friends, and followers. We stand in solidarity with all those affected by cervical cancer and remain steadfast in our commitment to preventing any more insurmountable losses.

Cervical cancer is a highly preventable and treatable disease when detected early through routine screenings and HPV vaccinations. However, disparities in access to healthcare, misinformation, and stigma continue to pose significant barriers to timely diagnosis and treatment especially in communities of color.

As advocates for cervical cancer prevention and elimination, Cervivor urges individuals to prioritize their cervical health by:

  1. Advocating for themselves and their loved ones by seeking regular screenings and medical attention for any concerning symptoms.
  2. Educating themselves about cervical cancer risks, prevention strategies, and available resources.
  3. Engaging in open and honest conversations about cervical health with healthcare providers, family members, and peers.
  4. Supporting organizations like Cervivor in their mission to raise awareness, promote education, and advocate for policy changes to improve cervical cancer prevention and care.

Jessica’s legacy will endure as a powerful reminder of the urgent need to prioritize cervical health and ensure that no one suffers the same fate due to misinformation, misdiagnosis, or inadequate healthcare access.

For media inquiries or further information, please contact Morgan Newman, Community Engagement Liaison at [email protected].

About Cervivor:

Cervivor is a nonprofit organization dedicated to cervical cancer advocacy, education, and support. Founded by a now 22-year survivor, Tamika Felder, Cervivor is committed to empowering individuals affected by cervical cancer to become advocates for their health while working to eliminate the stigma surrounding the disease. For more information, visit https://cervivor.org/. 

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Remembering Our History-Making Cervivor Ambassadors

As we continue to celebrate Women’s History Month, we take a moment to honor the remarkable contributions and legacies of three inspiring Cervivor Ambassadors who left an undeniable mark on our community and our mission to end cervical cancer.

Laura Brennan: A Light in the Darkness
[September 30th, 1992 – March 20th, 2019]
In the vibrant landscape of Ireland, Laura Brennan illuminated a path of hope and action in bringing awareness to cervical cancer. A tireless advocate, Laura’s journey began with her own diagnosis of cervical cancer at a young age. Faced with this challenge, Laura turned her pain into purpose, becoming a leading voice in the campaign to increase HPV vaccination rates across Ireland.

Her dedication and heartfelt advocacy efforts sparked a surge of almost 20% in the number of young women choosing to receive the HPV vaccine. Laura’s impact rippled far beyond her native shores, inspiring countless individuals worldwide to take proactive steps toward cervical cancer prevention. Despite her untimely passing at the age of 26, Laura’s legacy continues to shine brightly, serving as a place of hope for future generations.

Holly Lawson: Advocating with Heart
[November 8, 1978 – March 13, 2020]
From the heart of Texas emerged Holly Lawson, a force of nature whose passion for advocacy knew no bounds. As a dedicated educator and lifelong learner, Holly’s journey with cervical cancer propelled her into the realm of patient advocacy, where she found her true calling. Embracing her role as a Cervivor Ambassador, Holly poured her heart and soul into supporting and uplifting others impacted by cervical cancer.

Through her leadership roles within the Cervivor community, including her invaluable contributions as the Community Engagement Liaison and Co-Administrator of Survivor Slimdown, Holly touched the lives of countless patients and survivors. Her infectious spirit, Southern charm, and determination inspired all who had the privilege of crossing paths with her. Holly’s legacy of resilience and compassion continues to remind us of the power of advocacy and community support.

Becky Wallace: Fierce Mama Bear
[March 21, 1983 – October 14, 2021]
In the golden state of California, Becky Wallace emerged as a survivor with a heart as vast as the Pacific Ocean. Faced with the challenge of cervical cancer, Becky approached her diagnosis with courage, grace, and determination to make a difference.

As a devoted mother and fierce advocate, Becky dedicated herself to raising awareness about cervical cancer prevention, supporting others on their cancer journeys, and making sure that her fellow mothers and community of Asian women to “Know Their Existence”. Her boundless kindness and infectious laughter touched the lives of all who had the privilege of knowing her. Becky’s legacy lives on in the hearts of those she inspired, a testament to the enduring power of love, resilience, and community.


Thank You for Your Enduring Legacy
As we reflect on the immeasurable contributions of Laura (26), Holly (41), and Becky (38), we are filled with profound gratitude for their dedication to ending cervical cancer for all. Their advocacy, boundless compassion, and courage have left an indelible mark on the world, inspiring countless individuals to take action and stand united in the mission to end this devastating disease. 

We extend our deepest gratitude to Laura, Holly, and Becky for their enduring legacy of hope, resilience, and empowerment. Their voices will forever echo in the hearts of those they touched, guiding us forward in our shared mission to create a future where cervical cancer is a thing of the past.

The Evolution of Cervical Cancer Prevention

Historically, Pap tests have been pivotal in identifying precancerous lesions and enabling early intervention. However, for many years the cause of cervical cancer was unknown. Cervical cancer was often treated differently than other cancers because of the lack of evidence to show the link of what caused it. Scientists shared theories that focused on the virus and a woman’s sexual activity which created a stigma that would continue for years. As medical knowledge advances, so does our understanding of the human papillomavirus (HPV), screening, and vaccination for cervical cancer prevention. Cervivor, Inc. believes in a comprehensive approach that involves embracing new technologies and strategies to enhance early detection and prevention.

Education: A Key Pillar
The organization recognizes the power of knowledge and personal stories in cervical cancer prevention. Education empowers those with a cervix to make informed decisions about their health and to pass that knowledge onto others to do the same. The organization participates in widespread awareness campaigns that not only emphasize the importance of regular screenings but also educate the general public about the Human Papillomavirus (HPV), its link to cervical cancer, and the available preventive measures. Would you like to help spread awareness? Check out our social media kit here!

HPV Vaccination: A Game-Changer
Another groundbreaking advancement in cervical cancer prevention is the development of HPV vaccines. Cervivor, Inc. stands firmly behind the importance of screening and vaccination as a primary prevention strategy. By vaccinating young individuals against HPV, we can significantly reduce the risk of cervical cancer. One way we can accomplish this goal is to hold and participate in widespread vaccination campaigns, ensuring accessibility and affordability for all. For more impactful vaccination resources, visit our partners at the National HPV Vaccination Roundtable.

Emotional Support: Nurturing the Whole Person
Cervivor, Inc. understands that cervical cancer prevention goes beyond physical health. We have to treat our whole health and emotional support is a critical component of healing. By addressing the emotional aspects of a cervical cancer diagnosis, Cervivor, Inc. aims to empower patients and survivors alike. The organization provides a safe space for individuals to share their stories and personal experiences that cultivate community and a commitment to the organization’s mission of ending cervical cancer.

Advocacy: Comprehensive Healthcare Policies
Cervivor, Inc. advocates for comprehensive healthcare policies. This includes policies that support widespread HPV vaccination, improve access to screening services, and prioritize emotional well-being in cancer care. The organization actively engages with policymakers to shape a healthcare landscape that prioritizes cervical cancer prevention on multiple fronts.

Founder & Chief Visionary, Tamika Felder moderating the 2024 Cervical Cancer Forum at the White House, Biden Cancer Moonshot Initiative

Collaboration: Become Partners in Purpose
Cervivor, Inc. recognizes the value of collaboration in achieving its mission. By partnering with healthcare professionals, researchers, and other advocacy groups, the organization strives to create a unified front against cervical cancer. As lived experience leaders, Cervivor community members serve on guideline development panels, the latest research studies, as advisory board members, and so much more. Together, these collaborative efforts can drive innovation, improve preventive strategies, and provide comprehensive support to those impacted by cervical cancer.

As we move forward in our mission to end cervical cancer, Cervivor, Inc. stands at the forefront, championing the many avenues of cervical cancer prevention. The evolution of cancer prevention tools is exciting and emphasizes the importance of education, vaccination, emotional support, and comprehensive healthcare policies. By addressing cervical cancer from multiple angles, we can create a future where the incidence of this devastating disease is drastically reduced, and the lives of those who have a cervix are safeguarded through a comprehensive and compassionate approach to cervical cancer prevention.

Empowering Lives: Cervivor, Inc. Stands Strong on International HPV Awareness Day

Today, on International HPV Awareness Day, Cervivor, Inc. stands united with individuals, organizations, researchers, providers, and communities worldwide to raise awareness about the Human Papillomavirus (HPV) and its link to cervical cancer.

As patient advocates for cervical cancer awareness, we believe that education, the empowerment of survivor stories, routine screenings, and vaccination are key elements in the global mission to end cervical cancer. We celebrate the progress made and shed light on the collaborative efforts aimed at eliminating HPV-related cancers.

Education as a Shield Against HPV

Education serves as a powerful tool in the prevention of HPV and its associated cancers. At Cervivor, Inc., we emphasize the importance of understanding the risks, transmission, and consequences of HPV. By cultivating awareness, we aim to empower individuals to make informed decisions about their overall health and well-being.

The first step in preventing HPV-related cancers is understanding the virus itself. HPV is a commonly transmitted infection that can affect both men and women. With over 100 different types, some strains are considered high-risk and are linked to the development of cervical cancer. By spreading knowledge about the virus, we hope to break down the stigma surrounding HPV and encourage open conversations.

Empowering Survivor Stories

Behind every statistic is a person, and at Cervivor, Inc., we believe in the power of survivor stories. Sharing experiences helps break down barriers, reduce stigma, and create a supportive community for those affected by HPV-related cancers. Survivor stories serve as a source of inspiration, proving that a diagnosis does not define an individual’s future.

Through our private social media group we provide a safe space for HPV-related cancer survivors to share their journeys, triumphs, and challenges. By amplifying these voices, we aim to empower others, offering hope and encouragement to those navigating their own HPV-related cancer experiences. Together with our community partners, we build a network that stands strong against the impact of cervical and other HPV-related cancers.

Routine Screenings and Vaccination: A Dual Strategy

Routine cervical cancer screenings and HPV vaccination are crucial components of the strategy to eliminate cervical cancer. Screenings, such as Pap and HPV tests, can detect abnormal changes and the status of an active infection in the cervix early on, allowing for timely intervention and preventing the progression of cancer. Cervivor, Inc. advocates for regular screenings as part of a comprehensive approach to cervical health as well as the elimination of the disparities in accessing these life-saving screenings and vaccinations. 

Additionally, HPV vaccination is a proactive measure to prevent infection with the high-risk strains of the virus. Vaccination not only protects individuals from certain types of HPV but also contributes to herd immunity, reducing the overall prevalence of the virus in the community. By promoting both routine screenings and vaccination, we take significant steps toward a future where cervical cancer is rare. Check out the most recent study results from Scotland showing that vaccination is working!

A Shoutout to Our Partners at IPVS

Cervivor, Inc. extends a heartfelt shoutout to our incredible partners at the International Papillomavirus Society (IPVS). Their extensive campaign, involving organizations across the globe, has been instrumental in raising awareness and cultivating collaboration to end HPV-related cancers. We are working towards a world where no one has to face the devastating impact of an HPV-related cancer together.

On International HPV Awareness Day, Cervivor, Inc. reaffirms its commitment to educating, empowering, and advocating for those affected by HPV-related cancers. By embracing survivor stories, promoting education, and supporting routine screenings and vaccination, we strive towards the ultimate goal of eliminating cervical and other HPV-related cancers. We stand in solidarity with our partners at IPVS and the global community in the shared mission to make HPV-related cancers a thing of the past. Together, we can create a future where no one loses their life to a preventable disease.

Honoring the Life and Legacy of Jennifer Walker Myers

In the quiet corners of Pennsylvania, a fierce individual fought valiantly against cervical cancer. Today, we come together to remember and celebrate the extraordinary life of Jennifer “Jenn” Walker Myers, a woman whose strength, resilience, and generous spirit touched the lives of many.

Jenn’s journey with cervical cancer brought her to the doors of Cervivor, a community that became her refuge and her sanctuary. In her own words, “When I discovered Cervivor two and a half years ago, I felt like a weight that I didn’t even know existed was lifted from my mind.” 

This group of women from diverse backgrounds understood the depth of her struggles, offering solace and understanding that transcended the boundaries of a traditional support network. Cancer became Jenn’s unexpected occupation, leading her to leave behind a career she loved. Yet, rather than succumbing to despair, she channeled her 30 years of leadership, mentoring, communication, and support experience to uplift others within the Cervivor community. For Jenn, this became a new mission – a calling that resonated with her heart and soul. “Cancer is my new job, and Cervivor is the platform in which I can help others,” she proclaimed.

Jenn’s dedication extended beyond the digital realm of Cervivor. Despite her ongoing treatments and the physical toll they took, she actively participated in initiatives like the Cervical Cancer Awareness Month planning committee, demonstrating her commitment to raising awareness about cervical cancer. Her advocacy work was not confined to boardrooms or meeting halls; even from her hotel room in the midst of recovery, she continued to lend her voice to the cause.

One of the remarkable qualities that defined Jenn was her passion for helping others navigate the complex landscape of clinical trials. In her role as a patient advocate, she enlightened others on the intricacies of these trials and offered a sign of hope, showing that there were still options for those in the throes of this relentless and unforgiving disease.

While facing multiple recurrences of cervical cancer, Jenn refused to let it impede her mission. She remained an active participant in Cervivor, utilizing various platforms – news interviews, panels, and patient advocate roles – to share her story and bring about change. She served on the National Cancer Institute’s Cervical Cancer Task Force, was an American Association for Cancer Research member and was featured in their 2022 annual report to Congress. Her voice echoed through fundraising efforts, turning her own birthday into a donation drive to support Cervivor’s Comfort Care and Compassion Program as well as gathering her family to do multiple unique fundraisers in her honor — a true testament to her compassion and commitment to the cause.

Even as Jenn continued her journey through cervical cancer, she never stopped spreading awareness about the importance of HPV vaccination and the realities of living with this disease. She shared her story with candor, honesty, and a desire that anyone facing cervical cancer would find the same support and camaraderie she discovered within Cervivor. Jenn was acknowledged with the 2022 Cervivor Champion Recipient, the 2022 Erica Frazier Stum Living with Cancer Recipient and was a 2023 Cervivor School Graduate.

In early 2024, Jenn along with her family established The Nennie Foundation. Jenn was lovingly known as ‘Nennie’ to her nieces and nephews. The nonprofit was developed to help cancer patients by assisting them financially with their cancer journey. Jenn was blessed to be able to navigate her journey financially unlike many others in the same situation. The Nennie Foundation will provide grants to cancer patients who face financial challenges in accessing healthcare. These “small acts of kindness” represent how Jenn liked to shower her family and friends with small gifts as thank yous, get well or milestone celebrations. It was Jenn’s wish that no flowers be sent but instead to consider donations to the Nennie Foundation to help as many cancer patients as possible in her honor.

Jennifer Walker Myers may have left this world, but her legacy lives on. She leaves behind a trail of inspiration, advocacy, and hope that will continue to guide and uplift those who follow in her footsteps. Today, we honor a true Cervivor, a symbol of strength and resilience, and a woman whose impact on the fight against cervical cancer will forever be etched in our hearts.

Cultural Perspectives: Understanding the Impact of Cervical Cancer on Black Women

Cervical cancer is a global health concern that affects women of all races and ethnicities. However, when we look into the cultural nuances surrounding healthcare, it becomes evident that certain communities face unique challenges. 

Black women, despite advancements in healthcare, continue to face disproportionate rates of cervical cancer. The reasons behind these disparities are complex and rooted in a combination of socioeconomic factors, healthcare access, and cultural considerations. To truly understand the impact, we need to listen to the stories of Black women who have faced the challenges of cervical cancer head-on.

Impactful Stories of Black Cervical Cancer Survivors

Shondria’s Journey: Navigating Societal Norms: “Giving up my dream of having children with the man I loved and giving Romeo a sibling was one of the hardest things to deal with. After Matt and I got married, people automatically asked when were we going to have a baby. My son was from a previous relationship and Matt didn’t have any kids and I was hoping that later down the line if we were still together we would be able to have a child or 2. I even told my doctor that I didn’t want to give up my reproductive rights but I still chose the supposed better option. On March 27, 2008, I had my radical hysterectomy where they removed my cervix, the top part of my vagina, my uterus, my Fallopian tubes, and about 20 lymph nodes. I requested a copy of my surgery report that showed that the cancer was about 1 cm. Everything else was negative for cancer. Raising awareness is so important and I don’t know how many times at work I hear my female coworkers say they don’t think they need a Pap or they’re too afraid to find out if it’s bad news. Also, knowing your family’s medical history is so important! My mom never told me that other women in our family have had cervical cancer, ovarian cancer, and vulva cancer, which is extremely important to know. Knowledge is power!”

Urika’s Story In Overcoming Systemic Barriers: “Before starting my chemo treatments, my doctor at the time was having issues with my insurance to get my treatment started. She was beginning to get frustrated with my health insurance company because she wasn’t able to begin my treatments without approval. I received a call one day from my doctor saying, “Ms. Fraser. you are young and you have three kids to live for. I can no longer wait for your insurance to be approved. So my next step is to have you come into the emergency room and be admitted into the hospital.” At this point, I had no other choice but to believe in my doctor and do as I was told. I was checked in and admitted. I was mighty scared. My doctor came in and explained to me my chemo plan. She informed me the only way for me to begin treatment was for her to keep me in the hospital and bill my insurance later. After talking to me about my treatments, she brought in the doctor who would be doing my radiation treatments and he informed me he would be doing my radiation treatments for free. I stayed in the hospital for over a month and a half. I even celebrated my birthday in the hospital all while doing chemo and radiation. Eventually, I was released from the hospital and able to go home – not to my kids but instead to a family member’s house because my house was over an hour away from the hospital. I continued my treatments and eventually the tumor was no longer there. However, the cancer had spread to my lungs. I had to have a small piece of my lung removed and started chemo all over again – and this time I lost my hair.”

Felicia Fe Fea’s Advocacy: Empowering Through Education: “I had been experiencing heavier periods for numerous years, but thought nothing of it until in 2017 when the bleeding turned into flowing out like a water fountain and giant blood clots that would randomly fall out. I had gotten to the point of having to wear Depends. I was pale and weak. I kept advocating for myself by asking questions to my OBGYN and my advocating and questioning were ignored and minimized. I was told it may be hormonal and I might be going through menopause. Even though I had been with the same OBGYN for over ten years, who knew my history of abnormal paps and who had performed two LEEPs on me which supposedly burned off the precancerous cells, had never checked for cervical cancer. Instead, they told me to eat rare steak and liver to raise my iron levels, shot me up with hormones, and conducted an ablation on me going straight through my cervix. During my ablation, the OBGYN talked about how she had not seen anyone bleed so much during this procedure but when I questioned her she stated how much experience she had and how she had done 100’s of these. As I bleed I was sent home with no answers. I continued to basically hemorrhage for months. I couldn’t work because large blood clots would just fall out randomly and the Depends could not even hold them. The doctor kept trying to force me back to work and kept suggesting a hysterectomy with no real diagnosis other than the heavy bleeding. I was so weak and tired of wearing Depends so I decided to go along with the hysterectomy. I had labs done and my numbers were so low I had to have a blood transfusion before I could have surgery. Not once did my OBGYN say “Let’s check for cancer”; even knowing my history, as if I were an experiment (much like the Mothers of Gynecology Anarcha, Lucy, and Betsey). I had my transfusion and was off to surgery in March 2018. The surgeon contacted me and stated she would be sending my cervix and uterus to pathology because it was “torn up”. After that, I got the ‘you have cancer’ call. My entire cervix was a tumor and I had stage 2B cervical cancer that had moved into my uterus.”

Moving Forward

Understanding the impact of cervical cancer on Black women requires a holistic approach that addresses cultural, social, and systemic factors. It’s crucial to amplify these stories, cultivate open dialogue, and promote education within communities. By acknowledging the unique challenges faced by Black women, we can work towards creating a healthcare landscape that is inclusive, equitable, and supportive for all. We can break the barriers and ensure that no one is left behind in the fight against cervical cancer.

Are you a cervical cancer patient, survivor, or thriver that identifies as Black? Share your story at Cervivor.org! Then join our private group, Cervivor Noir to gain support and learn how your story can create change.

Empowerment Through Knowledge: Understanding HPV and Cervical Cancer Prevention

We are Cervivor, a community where empowerment through knowledge is our driving force. We believe that education is the key to preventing cervical cancer, and our mission is to support and empower individuals affected by cervical cancer and eliminate the feeling of being ashamed of an HPV diagnosis.

What is HPV?
The Human Papillomavirus (HPV) is the most common sexually transmitted infection globally. While many HPV infections resolve on their own, certain high-risk types can lead to cervical cancer. Knowledge about HPV is crucial for prevention, early detection, and effective management. Cervivor is dedicated to providing comprehensive information about HPV to ensure that everyone has the tools they need to protect themselves and their loved ones.

How Can We Prevent Cervical Cancer?
Cervical cancer is largely preventable through vaccination, regular screenings (i.e. Pap tests and HPV tests), and early treatment of precancerous lesions. Cervivor encourages individuals to take charge of their health by understanding the importance of preventive measures. Through our community, we provide a platform for sharing experiences, asking questions, and cultivating a supportive environment for those navigating the journey of cervical cancer.

Empowerment begins with knowledge. Cervivor equips individuals with the information needed to make informed decisions about their health. We believe that by understanding the risks associated with HPV and cervical cancer, individuals can take proactive steps toward prevention, leading to better outcomes and improved overall well-being.

Every year, Cervivor recognizes individuals who have shown exceptional dedication to raising awareness about cervical cancer, supporting those affected by cervical cancer, and advocating for HPV vaccination and routine screenings. The 2024 Cervivor Champions are shining examples of resilience, courage, and commitment to making a difference. Let’s take a moment to celebrate and honor these extraordinary individuals:

  • Ambassador Nancy G. Brinker, CEO Susan G. Komen & now The Promise Fund
  • Gilma Pereda, Cervical Cancer Survivor
  • Jennifer Young Pierce, M.D., M.P.H., F.A.C.O.G., Professor of Gynecologic Oncology at University of South Alabama

Ambassador Nancy G. Brinker
Gilma Pereda
Dr. Jennifer Young Pierce & Tamika Felder, Founder, Cervivor, Inc.

  • Jonny Imerman, Co-Founder Imerman Angels & ClozTalk
  • Karen North, Breast and Cervical Cancer Survivor, Cervivor LGBTQIA+ Lead
  • Linda Eckert, MD, Board-Certified Obstetrician and Gynecologist and an Internationally Recognized Expert in Immunizations and Cervical Cancer Prevention
Jonny Imerman
Tamika Felder, Dr. Linda Eckert, & Carol Lacey
Karen North

  • Lorie Wallace, Cervical Cancer Survivor
  • Michelle Whitlock, Cervical Cancer Survivor & Award-Winning Author

Lorie Wallace
Michelle Whitlock

Empowerment through knowledge is the cornerstone of Cervivor’s mission. By understanding HPV and cervical cancer prevention, individuals can take control of their health and contribute to the broader effort to eliminate cervical cancer. As we celebrate the 2024 Cervivor Champions, we are inspired by their passion and dedication, reinforcing our belief that together, we can create a world where cervical cancer is a thing of the past. Join us in our mission to educate, support, and empower – because knowledge is the key to a healthier future.

Pioneering Moments in Cervical Cancer with Tamika Felder

Cervical cancer is a global health problem that disproportionately affects Black women. Statistics reveal that Black women are twice as likely to be diagnosed with and die from cervical cancer than White women. This disparity underscores the urgent need to address the systemic issues that contribute to unequal access to care and preventive screening that is necessary to eliminate cervical cancer.

In honor of Black History Month, we celebrate Cervivor Founder and Chief Visionary, Tamika Felder’s pioneering moments in cervical cancer awareness and advocacy. As a long-time cervical cancer survivor and internationally recognized patient advocate for cervical cancer prevention, Tamika has been a driving force in the fight against this disease. Her journey and advocacy have left an indelible mark on the cervical cancer community, inspiring change, health equity, access to care, and the creation of a community of patients and survivors sharing their lived experiences with others. 

Tamika’s tireless efforts have significantly contributed to the mission of ending cervical cancer once and for all. Founding Cervivor 19 years ago has not only brought survivors together but has also played a pivotal role in spreading awareness, providing education, and offering support to those impacted by this disease. Through her advocacy, she has amplified the voices of survivors and thrivers, ensuring that their stories are heard and their needs are addressed.

The recent Cervical Cancer Summit powered by Cervivor, where Tamika’s presence was felt, served as a testament to the impact of her advocacy. The summit brought together experts, researchers, healthcare professionals, family members, and patient advocate voices to discuss the latest advancements, challenges, and strategies in the cervical cancer space. The discussions and initiatives that emerged from this event have the potential to shape the future of cervical cancer awareness and prevention.

Tamika’s advocacy has also been instrumental in addressing the disparities in cervical cancer education, treatment, and prevention among Black women. Her commitment to empowering individuals with knowledge and resources, promoting early detection, and reducing the burden of cervical cancer in Black communities won’t stop.

Tamika’s story is a part of cervical cancer history. Her advocacy has not only raised awareness but has also paved the way for a future where cervical cancer is eradicated. As we share our stories we stand in solidarity with Tamika and work towards this shared mission.

Her story, your story, and our stories matter. Together, we can make a difference and create a world free from cervical cancer as we know it.

Empowered Voices: World Cancer Day

Today is World Cancer Day!

It’s a day we stand together as a united force, amplifying the voices and stories of our diverse Cervivor Community. Each face and each story carries its own unique impact, shedding light on the challenges and triumphs in the fight against cervical cancer.

In our global community, we celebrate diversity—the strength that comes from our differences and the resilience that unites us. Today, we invite you to see the faces of our Cervivor Community, to feel the impact of their unique stories, and to join us in our mission to eradicate cervical cancer.

Every story shared, every voice heard, brings us one step closer to our shared goal: a world free from the burden of cervical cancer. 

We refuse to accept the status quo. We refuse to let shame, pain, or loss define us. Instead, we choose to stand together, to advocate for change, and to empower one another to take proactive steps toward prevention and early detection. 

Share your story. 

We can make a difference. 

We can and must eradicate cervical cancer. It begins with awareness, with education, and with action. Today, we call on you to prioritize screening—for yourself, for your loved ones, and for our Cervivor community.

Let us make World Cancer Day not just a day of awareness, but a day of action. Let us pledge to Screen 4 Us, to advocate for change, and to stand in solidarity with those impacted by cervical cancer.

Let’s ensure no one faces cervical cancer alone. 

Your support empowers us to educate, advocate, and eradicate this disease. Consider donating to Cervivor today and join us in our mission to see a future free from cervical cancer. 

Together, we can make a difference.

Reflecting on the Cervical Cancer Summit: A Step Forward in Cervical Cancer

Last week, the global cervical cancer community came together for a momentous occasion for the Biden Cancer Moonshot Cervical Cancer Forum with a crucial discussion being led nonother by our Founder and Chief Visionary, Tamika Felder.

Tamika Felder Moderates the Cervical Cancer Forum on January 25, 2024
Tamika Felder Gives Welcoming Remarks at the Cervical Cancer Summit

Then over the weekend, the Cervical Cancer Summit powered by Cervivor was held at NeueHouse in New York City. This event brought experts, researchers, healthcare professionals, family members, and patient advocate voices together under one roof to discuss the latest advancements, challenges, and strategies in the cervical cancer space. Check out the key takeaways from the summit, highlighting the crucial discussions and initiatives that can potentially shape the future of cervical cancer.

The State of Cervical Cancer: The summit kicked off with a sobering overview of the current domestic and global burden of cervical cancer. Dr. Catharine Young or the Biden Cancer Moonshot, emphasized the need for concerted efforts to address this preventable disease. The discussions underscored the importance of raising awareness and implementing widespread screening programs to detect and treat cervical cancer at an early, more manageable stage. Followed by the basics of cervical cancer and treatment by world-renowned Radiation Oncologist, Dr. Onyinye Balogun.

Collaboration and Communication: Local Gynecologic Oncologist, Dr. Jason Wright teamed up with long-time patient advocate and Cervivor Ambassador, Patti Murillo Casa to share how effective communication and partnership have benefited in raising awareness in New York. 

Dr. Catharine Young, Biden Cancer Moonshot, Patti Murillo Casa, and Dr. Jason Wright enjoying the Summit.
Jonny Imerman, Imerman Angels & ClozTalk

Dynamic Keynote Addresses: By Jonny Imerman, Co-Founder of Imerman Angels and Cloz Talk, and Ambassador Nancy G. Brinker, Founder of Susan G. Komen and the Promise Fund.

Addressing Disparities: One of the summit’s overarching goals was to address health disparities in cervical cancer prevention, treatment, and survivorship. Expert and patient-led panels discussed the challenges faced by marginalized communities, both in terms of access to healthcare and cultural barriers. The summit called for a comprehensive, inclusive approach to ensure that cervical cancer prevention strategies are equitable and accessible to all.

Dr. Jennifer Young Pierce Presenting on Stigma and Vaccination
Dr. Nany Pena Presenting on Cultural Stigma and Health Equity

Vaccination and Stigma: Vaccination against human papillomavirus (HPV), a leading cause of cervical cancer, emerged as a central theme. Presenters shared updates on vaccination and strategies to improve HPV vaccine coverage globally. The summit emphasized the importance of education and outreach efforts to dispel myths and misinformation surrounding HPV vaccination, ensuring that more individuals receive the protection they need and eliminating the stigma surrounding it.

The Cervical Cancer Summit is a milestone in the ongoing mission to end cervical cancer. By fostering collaboration, sharing knowledge, and advocating for change, the summit has set the stage for a future where cervical cancer is not just treatable but preventable. As we reflect on the discussions and initiatives sparked by this event, it is evident that the path forward involves a collective commitment to prioritize women’s health globally.

Founder and Chief Visionary, Tamika Felder announced on Saturday the establishment of The Virginia “Ginny” Marable “Cervivor Baby” Grant: Supporting Your Path to Parenthood.

Congratulations to the 2024 Cervivor Champion recipients: Jonny Imerman, Ambassador Nancy G. Brinker, Dr. Linda Eckert, Dr. Jennifer Young Pierce, Michelle Whitlock, Lorie Wallace, Karen North, and Gilma Pereda! Your dedication and contributions to Cervivor’s mission are truly commendable. Your efforts make a significant impact in raising awareness, supporting those impacted, and advancing research in the mission to end cervical cancer. Cervivor applauds your commitment to making a positive difference in the lives of individuals affected by this disease.

We appreciate the generous support from our dedicated sponsors: Hologic, Seagen, Genmab, BD, and Roche. 

PRESS RELEASE: Cervivor Founder & Chief Visionary, Tamika Felder To Speak At The White House For The Biden Cancer Moonshot Cervical Cancer Forum

MARYLAND, January 25, 2024 – Tamika Felder, Founder and Chief Visionary, invited to moderate at the Cervical Cancer Forum at the Biden Cancer Moonshot initiative hosted at the White House on Thursday, January 25th, 2024.

“The 2024 American Cancer Society Facts and Figures Report estimates nearly 2 million Americans will be diagnosed with cancer and cervical cancer is on the rise for those in their 30’s and 40’s,” said Tamika Felder, Founder and Chief Visionary of Cervivor. “Cervical cancer is preventable with vaccination, screening, and early treatment. We need to raise awareness across the nation to prevent it from taking more lives.”

Leaders, advocates, and survivors will gather to have crucial discussions on the future of women’s health. The public is invited to tune into the opening session from 10:00 AM – 11:45 AM ET. Tune into the live stream: https://www.youtube.com/live/G9rv95jydKA.

“This isn’t just a meeting; it’s a historic moment where we – the advocates, patients, and survivors – sit alongside leaders of the national Cancer Moonshot initiative,” says Felder, “Let’s rewrite the future of women’s health, one powerful conversation at a time!” Those interested in learning more about Cervivor are encouraged to visit www.cervivor.org.

FOR MORE INFORMATION, CONTACT:
Cervivor, Inc., [email protected]

What I Learned from Cervical Cancer

I was diagnosed with stage IB2 cervical cancer in February 2017. After my diagnosis, I learned that January is Cervical Cancer Awareness Month. I learned that the colors of the cervical cancer ribbon are teal and white. And I learned that it was hard to find cervical cancer support groups on social media, until I found Cervivor. 

At that time of my diagnosis, I was 31 years old. I battled cervical cancer for nine months, had a hysterectomy in October 2018, and did 27 radiation treatments over five weeks in early 2019. At the end of treatment, I was hoping I would go back to living a normal life, hoping to have a positive outcome with positive results, and hoping to fully heal from having cervical cancer.

The most difficult part for me was the fear of having surgery, becoming anemic, dealing with pelvic infection or other body pain, and feeling alone. But most difficult has been that I can’t plan to have any more children due to my cancer treatment. 

Today, I am cancer free! I try to do my best to live a healthy life. I still go to the doctor for follow-ups and scans. I have learned the importance of continuing after-cancer care with your doctor. I have learned that it is important to get vaccines, like the HPV vaccine. I am thankful for my life after treatment. I am happy and excited that I was able to finish my higher education and receive my Bachelor’s Degree while battling cervical cancer. 

I have learned it is important to stay connected with other cervical cancer survivors, to get involved in the community, to go to events, to join Cervivor’s monthly Creating Connections meetups, and to support current fundraisers. As members of the Cervivor community, we all can learn from other cervical cancer survivors and raise awareness to end cervical cancer.

Rachel Sutton is a cervical cancer survivor from Orange County, California. She is a single mom who was diagnosed with stage IB2 cervical cancer at the age of 31. She underwent cancer treatment while raising her son and pursuing her Bachelor’s Degree. 

Trust In Your Care Team

My cancer posse is comprised of some of the best folks—kith and kin from around the country who rallied in April 2022 when I was first diagnosed with synchronous cervical and uterine cancers. Throughout this unchartered journey, my husband, married daughter in Mississippi and son in Massachusetts have each been effective posse leaders, giving me strength for the road, dispensing loving advice (whether solicited or not!) and serving as liaisons for meal trains, care packages and other generous support. They truly have been my first line of defense.

Dr. Mark and Doris

But, when I look back on this odyssey, I must admit that any success along this journey was determined by my relationship with the principal guide on this trip: my gynecologic oncologist. Captain of my medical team, he was instrumental in shepherding me through the cancer maze: treatment plans; laboratory results; side effects; scans. How blessed I am to have this particular medical professional on my posse.

Dr. Jaron Mark was referred to me after the biopsy and diagnoses. I was slightly surprised at our first consultation. The white-coated doctor who walked in and shook my hand did not appear much older than my son. A soft-spoken but confident young Black man, I was rather pleased that my oncologist would look like me, but I needed to be assured that he was ready for THIS middle-aged Black woman (who has occasionally been deemed a crusty old broad) as a patient. I recall one of the comments I made to him that day to let him understand my mind-set: “Doctor, I plan to celebrate my 100th birthday, and you’re going to help me get there!”  

He looked somewhat taken aback, but then recovered well, smiled and nodded. He seemed up for the challenge.

I was also impressed when he shared that he is an alumnus of Meharry Medical College in Nashville, Tennessee. Established in 1876, Meharry was the only medical school to admit Blacks in the South and was the training ground for generations of Black doctors. As a graduate of an historically Black institution in Ohio myself, I always feel a special bond with other such alumni. His esteem was elevated further in my eyes when I discovered he was in practice with his father. Fighting cancer is very much the family business, I suppose.

The true value of our relationship was revealed during those early months of treatment. My oncologist carefully explained every step along the road, using lay terms to describe complicated procedures. He made certain to discuss side effects while also providing realistic possibilities. He never sugar-coated information, yet maintained an optimistic demeanor. And he was proactive. Although my cervical malignancy was Stage 3b1, he informed me that the Stage 1A uterine cancer was far more aggressive and deadly. He advised that I start chemotherapy immediately after brachytherapy, delaying a scheduled family vacation to Boston. When I protested, he very gently but firmly reminded me of the need to stall the progression of the uterine serous cells. He did not arrogantly reprimand me or condescend that he was the expert and I a mere patient; he actually appeared apologetic and concerned that I have all the facts to make an informed decision (the vacation was cancelled). 

Doris and her Radiology team at the START Center 

I ended chemotherapy on January 9, 2023. A scan later that month indicated no evidence of disease. However, by June I began experiencing digestive disturbances, abdominal discomfort and appetite loss. A further scan indicated recurrence of the uterine cancer in the peritoneum. My oncologist booked me for an immediate consultation and we discussed a plan of action that included oral chemotherapy and immunotherapy. But we also discussed a “Plan B” if the desired results were not achieved. I appreciated that he did not advise repeating the treatment plan that did not work the first time. And, if the medicine still fails to eradicate the cancer cells, he does not want to waste precious time; after 3-4 infusions of immunotherapy, he will order a scan to determine effectiveness. If there are no positive results, I will then take the clinical trial route. 

I now understand why so many patients complain about the medical attention (or lack thereof) received from too many doctors and nurses. From the first meeting, I sensed that my young oncologist translated my verbal and nonverbal messages accurately. He was respectful and attentive and I reciprocated the same. Even though I was an entire generation or two ahead of him, he did not patronize or minimize. He answered every question asked, even those posed by my family members. Also importantly, his staff clearly was expected to behave similarly. When a nurse bungled some insurance issues and miscommunicated with me during the first months of treatment, I expressed my displeasure to the doctor and they were no longer employed there at my next appointment.  

When Dr. Mark shook my hand at the end of our consultation last month, he looked me squarely in the eyes, smiled and shared words of encouragement that helped boost my spirits. In that moment, an unspoken bond was reaffirmed: he was not only my doctor, but a trusted fellow combatant in this war against my own cells, a posse member who continues to accompany me up hills and down valleys along the way. I could not ask for better!

A sixth generation Texan from San Antonio, Doris Helene White earned a B.A. from Central State University in Ohio (an historically black institution) and a juris doctorate from Boston University School of Law. Her career in the government sector as a Massachusetts trial attorney reaffirmed her commitment to an equitable legal system. Her husband Steven Soares, daughter Dr. Leigh Soares and son Steven Cooper Soares lead the best “cancer posse” in the galaxy! 

Cervivor Cares: Honoring Martin Luther King Jr.’s Legacy

In the spirit of Martin Luther King Jr.’s profound legacy of public service and activism, Cervivor, a global organization on a mission to end cervical cancer, is proud to introduce the Cervivor Cares initiative. Driven by a commitment to impact communities positively, Cervivor Cares aims to embody the values of compassion, equality, and service Dr. King championed throughout his lifetime.

Cervivor recognizes the importance of addressing health disparities and advocating for anyone with a cervix’s well-being. The Cervivor Cares initiative seeks to amplify Dr. King’s message of justice and equality by providing support, resources, and education to those impacted by cervical cancer. It is also a way to thank the medical teams that screen, treat, and support cervical cancer patients and survivors. 

By engaging in community outreach, awareness campaigns, and collaborative efforts, Cervivor Cares is dedicated to promoting preventive healthcare, destigmatizing conversations around the Human Papillomavirus (or HPV) and cervical health, as well as ensuring that every individual, regardless of their background, has access to the information and resources they need.

As we celebrate the lasting impact of Martin Luther King Jr.’s dream, Cervivor Cares stands as a testament to the belief that collective action and service can bring about positive change. Through honoring Dr. King’s legacy, Cervivor strives to create a world where cervical cancer is ultimately eliminated. Join us in this meaningful journey towards a healthier and more equitable future for all. 


You can provide the support and educational resources by donating directly through the Cervivor website or by shopping with purpose and sponsoring donation-based items in the Cervivor Shop!

Want to support Cervivor in another way? Sign up to volunteer your time and unique skills.

PRESS RELEASE: Governors and Mayors Across the U.S. Declare January as Cervical Cancer Awareness Month

Cervical Cancer Awareness Month aims to raise awareness and encourage women to schedule their screenings

MARYLAND, January 14, 2024 – In states and cities across the U.S., Governors and Mayors have declared January as “Cervical Cancer Awareness Month.” Proclamations have been issued at the request of patient advocacy group Cervivor and have been signed to raise awareness a disease that claims the lives of over 4,000 U.S. women a year.

“The U.S. Cancer Statistics Work Group states that in 2020, 11,542 new cervical cancer cases were diagnosed, and 4,272 lives were lost from it,” said Tamika Felder, Founder and Chief Visionary of Cervivor. “Simply put, death from cervical cancer is preventable with vaccination, screening, and treatment. We need to raise awareness across the nation to prevent it from taking more lives.”

According to the National Institutes of Health (NIH), the five-year survival rate of individuals diagnosed with cervical cancer is 67.2% due to improved treatment, early diagnosis, and vaccinations. However, cervical cancer incidence rates and death rates are still high among certain populations in the U.S., according to NIH, largely due to limited access to cervical cancer screening and vaccinations. In 2015-2019, African-American women were more likely to die of cervical cancer than any other group, followed by American Indian/Alaska Native, Hispanic, white, and then Asian/Pacific Islander.

Virtually all cervical cancers are caused by the human papillomavirus (HPV). The HPV vaccine has been proven to be safe and effective against types of HPV that cause 70% of cervical cancers, and the results from a simple Pap test and HPV co-test can be used to help prevent cervical cancer or detect cervical cancer in its earliest and most curable stages.

Patient advocacy organizations like Cervivor, who inspire and empower those affected by cervical cancer by educating and motivating them to use their voices for creating awareness to end stigma, are on a mission to ensure the disease is eradicated.

The following cities and states, by way of Cervivor, have issued these proclamations:

“We thank the Governors and Mayors for signing these proclamations and for their commitment to raising awareness of this disease,” says Felder. “Cervivor urges women to use this month to schedule their necessary health screenings to stay cancer free.” Those interested in learning more about Cervivor are encouraged to visit www.cervivor.org.

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About Cervivor: Cervivor is a global community of patient advocates who inspire and empower those affected by cervical cancer by educating and motivating them to use their voices for creating awareness to end stigma, influence decision and change, and end cervical cancer. Learn more at www.cervivor.org or visit us on Instagram, Facebook or X.

FOR MORE INFORMATION, CONTACT:
Kate Weissman, Cervivor Ambassador Phone: 610-324-3239 Email: [email protected]

Our Scars: What A Beautiful Mess

Here is an ‘artified’ version of my port scar. Currently if I wear a v-neck or scoop-neck piece of clothing it will show. Once my port is removed, it may change shape slightly but it will still be there unless I choose to have plastic surgery.

There is a lot of debate among my teal sisters about scars. Many have been so affected by their experience that they choose to cover them up through makeup, corrective surgery or tattoos. I absolutely respect their choices. I am choosing to embrace my battle scars.

I find it oddly comforting to see it. It’s also a great conversation starter. I have had people ask, “what happened?” I welcome that because then I am able to share my story and hopefully spread more awareness about cervical cancer. Like my c-section scar, it is a reminder of not just my physical journey but my emotional and spiritual one as well.

Wabi-sabi

Wabi-sabi is a concept that motions us to constantly search for the beauty in imperfection and accept the more natural cycle of life. It reminds us that all things including us and life itself, are impermanent, incomplete and imperfect. And it seems a much healthier way of looking at the world when you realize perfection is NOT the goal.

Kintsugi

An ancient form of art stems for wabi-sabi, whereby you mend broken objects with gold fillings, giving them ‘golden scars’. It’s know as Kintsugi or Kintsukuroi.

Think of a bowl or teapot that has been dropped onto the floor. What would you do with it? You’d most likely pick up the pieces and throw them away. But not with Kintsugi. Here you bring the pieces of broken pottery back together and glue them with liquid gold. Wouldn’t that make them imperfect, permanently and inevitably flawed yet somehow more beautiful? Kintsugi reminds us that there is great beauty in broken things because scars tell a story. They demonstrate fortitude, wisdom, and resilience, earned through the passage of time.

“Why hide these imperfections or golden scars when we are meant to celebrate them?” ~ Omar Itani

That’s how I see my scar – a beautiful imperfect that shows that brokenness can be healed and made whole again. Real… not perfect.

One of my favorite quotes is from Leonard Cohen, “There is a crack in everything, that’s how the light gets in.” Maybe that cracks or scars actually let your light out, to be seen and shared with others?

Christy Chambers is a 2023 Cervivor School Graduate and Cervivor community member thriving beyond Stage IVB cervical cancer. She resides in Monroe, North Carolina with her husband, son, and doggo, Ethel Mertz.

Closing the Door on 2023

We are just hours from closing the door on 2023 and jumping into 2024 with a jam-packed Cervical Cancer Awareness Month (CCAM)! Can we count on you to join us? But first, let’s check out some of the impact you have helped us achieve in 2023. Please take a moment to read Founder and Chief Visionary, Tamika Felder’s special newsletter and watch the video below.

Beyond this video, the Cervivor Community has…

  • Hosted in-person events like our Cervical Cancer Summit in New York City, kicking off with Founder and Chief Visionary, Tamika Felder, ringing the closing bell at Nasdaq; Hosting the Communities of Color Retreat in Washington, D.C., and we headed to the Pacific Northwest for Cervivor School Seattle where we celebrated 21 new graduates and awarded 5 new Cervivor Champions!
  • The Comfort Care & Compassion Program served over 300 individuals impacted by cervical cancer.
  • Inspired, supported, and empowered hundreds of cervical cancer patients and survivors from around the world to share their stories.
  • The addition of a Cervivor staff member, Kimberly Williams, as the Chief Diversity Equity and Inclusion Officer, was a position to make it clear on our commitment for health equity and closing the disparity gaps. Cervivor Noir,Cervivor Asian and Pacific Islanders, Cervivor Africa, Cervivor Caribbean, and a group for LGBTQIA+ Survivorswere developed, and the expansion of our private groups to include more safe spaces for necessary conversations and support. 
  • We continued to host many meaningful conversations through our monthly Creating Connections support group held every second Tuesday.
  • Season 3 of the Cervivor Podcast was launched in January with Joslyn Paguio returning as the host. The podcast has now reached listeners in 50 countries! Be sure to follow Cervivor Podcast on your preferred listening platform and check out the last episode of Season 3 featuring Team Cervivor here.
  • Virtual events were elevated by the creation of Below the Belt Conversations, HPV Cancer Survivors Connect to strengthen support beyond cervical cancer so that no one feels alone from any HPV-related cancer, and a virtual Advocacy Retreat for Communities of Color allowing several women from Africa and the Caribbean to join the discussion.
  • Continued with daily motivation, fit tips, and monthly challenges powered by Survivor Slimdown to over 452 cancer survivors in our private Facebook community. A huge thank you to both Hearts Bio and the University of North Carolina Weight Research Program for their continuous partnerships. 
  • In addition to using our voices to participate in various research studies, raising awareness in media interviews, and guiding new legislation, we gained the opportunity to serve as patient advocates for various committees and task forces through the White House’s Cancer Moonshot, President’s Cancer Panel, National HPV Vaccination Roundtable, National Cancer Institute (NCI), National Institute of Health (NIH), the National Cervical Cancer Roundtable, and the World Health Organization.
  • Founder and Chief Visionary, Tamika Felder, and Chief Diversity Equity and Inclusion Officer, Kimberly Williams were recognized by the American Cancer Society National HPV Vaccination Roundtable for Mentor/Mentee and Lived Experience Ambassador awards.
  • We became a member of the Union for International Cancer Control to further our commitment to our global advocacy work.
  • Hosted an intern from the historic HBCU Claflin University, Summer Edmond, who is majoring in Public Relations and was part of our strategic planning behind the scenes.
  • And we celebrated the #CervivorBaby’s first birthday! (That year went by pretty fast!)

As we reflect on the accomplishments of 2023, we are profoundly grateful for the generosity that has enabled us to make significant strides in achieving our mission – to our monthly donors, our one-time donors, and our incredible fundraising volunteers, we appreciate your support always. We would like to thank our generous sponsors who have helped support us through 2023: Hologic, Seagen, Genentech, Genmab, Roche, St. Jude HPV Cancer Prevention Program, and Regeneron.

And as we transition into 2024, Cervivor, Inc. remains dedicated to its commitment to ending cervical cancer. Our community has been the driving force behind our achievements, and we recognize that none of this would be possible without your ongoing support and generosity. We wish to remind you that there is still time to make a tax-deductible year-end contribution. Your support will contribute to furthering the initiatives that have represented our efforts in 2023. 

We appreciate your consideration and look forward to your continued support as we strive to make a meaningful difference in the mission to end cervical cancer.

With Gratitude,
Tamika Felder, Founder & Chief Visionary
Morgan Newman, MSW, Community Engagement Liaison
Kimberly Williams, MHCM, Chief Diversity Equity & Inclusion Officer
Team Cervivor

Happy and Healthy Holidays with Survivor Slimdown

The holidays are upon us, but this does not mean your health habits have to fall completely off the rails. We realize it is a season for family, friends, festivity, and food – lots of food. Temptations will be everywhere and this will disrupt your daily routines. Here are some tips and tricks that may help keep you on track:

Eating During the Holidays

Don’t Skip Meals. If you want to “party smart,” never starve yourself throughout the day thinking that it is going to help you save calories for the night.  It is a big mistake to try to “save” calories by skipping meals before the event. This will lead to overeating and making poor food choices. 

Stay Hydrated. Drink plenty of water during the day so you do not feel sluggish the next day. Staying hydrated not only helps maintain your water intake, but it can also reduce feelings of hunger.

Double Up on Veggies. This is always a great idea. Consider bringing a nutritious side dish to the gathering. This way, you can ensure there will be a healthy option available. For example, you could prepare Brussels Sprouts and sweet potatoes. 

Back to Routine. Go back to regular eating after a big holiday meal. Sometimes people keep indulging after the event is over. Remember, one day will not make that much of a difference, but several days certainly will.  

Drinking During the Holidays.

We understand that drinking might be part of the equation for holiday get-togethers.  Here are tips that may help you not to overdo it, and pack in those empty calories. 

Make Mindful Choices. Juices, soda, and alcoholic beverages are high in calories and sugar – especially those fancy cocktails.  Go for low-calorie alcohol beverages and sip your drink slowly. 

Drink Water Between Drinks. Alcohol is a diuretic so it is important to make sure that you stay hydrated by replacing the water that is lost when drinking alcohol. Drinking a glass of water before and between alcoholic drinks can help reduce the risks of dehydration.

Limit Yourself to 2 Drinks. The 2020-2025 Dietary Guidelines for Americans recommends drinking in moderation by limiting intake to two drinks or less.

Do not give in to peer pressure. Sometimes friends might make you feel obligated to keep on drinking to feel like you are part of the group, but do not give in. Remember you have goals that you want to reach.

Bonus Tips and Tricks

Make sure you are rested. The holidays can interrupt your sleep-wake cycle which affects your weight management goals. Get your sleep.

Avoid stress eating. Stress is one of the biggest triggers for overeating, especially during the holidays when there are so many tempting foods and sweets.

Practice self-care. Spend a few minutes each day by yourself. Take a walk, meditate, write in your journal, read a book, or even take a hot bath. 

Move your body every day. Go for a long walk. Do a 20-30 minute workout or even dance a couple of songs.  This will help your mindset and you will burn some extra calories. Your mind and body will thank you.  

Staying on track does not mean you have to deprive yourself or feel guilty because you overindulge. It means just being aware and planning ahead. It does not need to be perfect Planning will help you stay focused during the holidays and to be ready for a brand new year.

Happy Holidays Everyone! Wishing you all good health for the upcoming 2024 year.

Spreading Joy Through Acts of Kindness

Cervical cancer, a disease that affects women globally, is not just a diagnosis; it’s a life-altering experience that can test the limits of resilience and strength. The journey through cervical cancer is one that often involves not only physical and emotional challenges but also the search for a supportive community that understands and uplifts. In the face of this challenge, cervical cancer survivors and patients often emerge with a newfound determination to make a positive impact on the world. Many of these remarkable individuals transform their resilience into advocacy, becoming beacons of hope for others. Their stories and experiences not only inspire but also demonstrate the profound ripple effect of compassion and support within the Cervivor community. Read the inspiring experiences of these community members, whose acts of kindness and advocacy are creating a powerful impact, fostering hope, and building a network of support for people within their reach.

Arelene Simpson is a stage IB3 cervical cancer survivor residing in Washington State. She shares an experience that made an impact on her, “A few months ago, I met “Miss S” on the Next-Door app. She was going through some hard times and moved to Washington with just the clothes on her back and a new hope to find peace in her life. She needed new clothes, household items, and someone she could trust to help her get back on her feet again. She ran away from an abusive relationship, so trust was a big issue for her. It took several tries before she finally responded, and we arranged a meet-up where I gave her two boxes of clothes, shoes, and household items. She also asked if we knew anyone who had an affordable car for sale.

At the time, we had just sold our home in California and we had so much stuff transported to Washington. We also had an old car that we have been wanting to sell. We could have easily sold it to our neighbor who was offering double what we sold it to Miss S but, because of her situation, we decided to sell it to her. Miss S continually sends messages and every time she lets us know how our act of kindness hugely changed her life. I believe that God works in truly wonderful ways and brings the most unexpected blessings. I like to live by having an “Attitude of Gratitude” and live with purpose daily. To give more and to help people positively. When I think my days are hard, I think of Miss S and others who are going through even harder challenges, and it makes me want to give back even more. Paying it forward and giving back with acts of kindness makes me an even more grateful being. Gratitude is my attitude!”

Cervical cancer treatment is physically and emotionally taxing, often requiring a support system to navigate the journey. Survivors are finding creative ways to offer encouragement to those currently undergoing treatment, one of which is through inspirational bracelets. Christy, a North Carolina cervical cancer survivor with a heart full of compassion, started a project where she purchases and distributes inspirational bracelets to individuals going through treatment. Each bracelet is carefully selected with words of encouragement, strength, and hope. The simple act of wearing these bracelets becomes a tangible reminder that they are not alone in their journey.

Christy adds, “I have been a collector of ZOX bracelets for a few years. I love the designs, but more importantly, the goal of the company resonates with me: ‘to build a community that would welcome others with kind words and a gentle heart’. When I was diagnosed I could not find a cervical cancer support group in my area. I was in desperate need of a community; persons who understood what I was experiencing and who could offer a camaraderie that my friends and family could not. I realized I would simply have to build my own.

So I attached cards to 30 ZOX bracelets with a link to a Facebook page I started to chronicle my journey. The cards read: Hi, I’m Christy! I’m a cancer warrior currently battling Stage 4b Cervical Cancer. Please accept this little reminder that NO ONE FIGHTS ALONE!”. I left them at my local infusion and radiation departments with instructions that they be given to both patients and staff. A few months later I left 20 more, then 20 more. To date, I have leftover 100, but I also keep some in my purse and hand them out as I am out living life. Little by little my online community has grown; and that group of people, some of whom I have never met, have been instrumental in my journey! I saw a quote that read: “Kindness is giving hope to those who think they are all alone in this world.” 

I would like to think my simple act of sharing has given hope to many; I know it has fostered hope and joy in me! I’m choosing hope daily.”

The significance of acts of kindness cannot be overstated. They possess the remarkable ability to profoundly impact lives, instilling both the giver and the recipient with a renewed sense of hope and purpose. Research consistently demonstrates that kind acts are associated with increased life satisfaction. Kindness is not merely a fleeting gesture; its enduring impact resonates through communities, inspiring others to perpetuate this cycle of compassion. Each act of kindness, regardless of its scale, contributes to a collective reservoir of empathy and support, nurturing a network of strength and resilience. In the face of adversity, the profound effects of kindness serve as a testament to the enduring human spirit and the boundless capacity for empathy and generosity.

Have you carried out acts of kindness and would like to share your experience with us? Email us at [email protected]!

Navigating Loss and Stepping Into Healing

As a psychotherapist, I work often with individuals experiencing grief and quite regularly, find that people do not realize they are going through the grieving process when they are experiencing something that is not related to death. When we think of grief, we think of funerals and tears, not the loss of a friendship, the loss of a job, or our own health declining. On July 27th, 2020, at 8 am, I was beginning my workday when my phone rang. The voice on the other end of the call was the same warm, comforting voice that helped me stay breathing during my colposcopy only a few weeks earlier. “Your test results have come back. I am sorry, but you have cancer, and we have sent your paperwork up to an oncology team…” I spent the rest of the day, with a best friend by my side, staring at the floor in silence. I had no clue how my life would change or that grief would be part of my journey in some of the worst ways.

The next few weeks went by quickly, meeting my oncologist, setting up a treatment plan filled with backup plans, and many tearful calls with my mentor, Dr. Steve, who was also a cancer patient. I realized quickly what I am sure many others in this community have, cervical cancer is addressed but not often or in-depth enough, and breaking the rules I was given: DO NOT GOOGLE YOUR DIAGNOSIS, I immediately began feeling confused, ashamed, and guilty as I read everything I could find: HPV caused this? No one even told me I had HPV. I attended my exams as recommended, there was never a mention of abnormal pap, just a sore lower back and a lot of confusion. After diagnosis, there are a lot of questions that go through our minds such as: Am I going to die? What if my treatment has complications? Will I still be able to have children? What will happen to my body from the cancer? From my perspective, as a cancer patient and in working with cancer patients, rumination is our best friend and worst enemy.

So many of us in the cancer community have experienced “cancer ghosting” to some degree. When we need people the most, where are they? Quick to offer a kind word and prayers, but when we need help at home after surgery or a ride to and from chemo, where are these wonderful people who offered their support? We grieve the loss of friendships we thought we had. We grieve the way our bodies change from treatment and the loss of our hair from chemo, we grieve the time we lose during active treatment. And sometimes we develop friendships with some people we always wish we knew, and then they are gone. There are so many ways in which we grieve during this experience, and it seems to me that we only understand that grief as we go through it. We grieve how difficult it becomes to relate to others who have not had the same experiences, how could they possibly understand? When I first got sick, my mentor, Dr. Steve, told me, “…with cancer, sometimes we will come to deeply love someone only to lose them, and sometimes we are the ones they lose”. Sadly, we lost Dr. Steve in June 2023 to both
multiple myeloma and pancreatic cancer. I did not realize at the time that he was preparing me for losing him and, of all the things cancer took from me, losing him to cancer while I was still in remission was the hardest pill to swallow.

In connecting with other cervical cancer patients throughout the several months following diagnosis, there was a common theme of being fixated on the HPV portion of the diagnosis. Some said to me that it made them feel shameful because of language used such as “promiscuity” and “contracted through sexual partners”. One woman told me they could not stop fixating on the number of partners she had, a small amount, and began to feel anger toward previous partners. When I addressed the cancer diagnosis as a traumatic experience to this individual, I was met by a baffled expression… “I do not have PTSD”, they told me. Recent research will show that a vast majority of individuals dealing with cancer have either a prior diagnosis of a stressor-related disorder such as PTSD related to experiences in early childhood or will begin to develop symptoms during active treatment which makes the process, and survivorship, a sometimes very difficult period to navigate. To this, the best recommendation I can make is to take care of your mental health in any way possible beginning with your initial diagnosis. If you are a survivor and still feel lingering emotional pain, Psychology Today is a great resource in which you can find a trauma-informed counselor who specializes in working with illness.

Elizabeth Kubler-Ross, a psychiatrist, identified that there are five stages to grief: denial, anger, bargaining, depression, and acceptance in her book “On Death and Dying”. One important thing to acknowledge is that though there are stages listed, they are not linear, and some components can strike even years after finding out we are free of disease. When we think of the moment that we found out we had cancer, can we also recall the emotions surging through our bodies? For me, it was denial followed immediately by depression, and now, three years later, there are more moments of acceptance, but still periods of deep denial, almost to the point where I feel like an imposter. A cancer imposter. Some clients of mine have shared ways in which bargaining presented for them, feeling though if they had just done something differently, they would not have been “punished” with cancer. And that’s the thing about grief, and with cancer, it is not a punishment nor is it something to feel ashamed about. Cancer and loss are things that happen to you, but they do not have to be what defines you.

Through community, we can begin the healing process. The best thing I did for myself when I was diagnosed was to work with a mental health professional individually to process the changes I was about to endure; for my clients, we talk as little or as much as they want about what cancer is doing to them emotionally and/or to their loved ones, and I encourage them to use resources for support such as groups available through the Bright Spot Network, local therapy offices or their cancer center, and programs such as the Cancer Support Network. When someone we love passes, or we have a terminal diagnosis, I encourage joining groups through local hospices, a great and not well-known source in terms of support. It is important to not be fixated on one specific type of therapy, as there are many options, and while something like EMDR may seem appealing, it may not be an appropriate fit at a specific point in time but something such as trauma-focused cognitive behavioral therapy may be. Connecting with others in the cervical cancer community, or the cancer community in general, can be tremendous because it allows us to see and truly feel that we are not alone regardless of where we are on our journey. Cervivor is the best resource, in my opinion, for those with a cervical cancer diagnosis, not just because we are meeting others who had or have cervical cancer, but because we truly are a group of sisters who stand behind and support one another in a way I have never seen elsewhere. There has never been an unkind word from one sister to another because of things such as different treatment, different stages, different complications, just pure and unconditional love and support.

Another thing I often find myself suggesting to clients is to read books on grief, and at times, stories of others’ journeys through cancer. A friend of mine, Gina Moffa, LCSW, is a grief and trauma specialist who recently published a book called, “Moving on Doesn’t Mean Letting Go”, which I initially began reading to help me through the loss of my mother, my best friend Andrew, and Dr. Steve, who all passed within a 10-month period of one another not long after I finally began to feel consistently healthy. Her book provided tools and insight into the grieving process that helped me reframe my entire cancer experience, and through the loss of my loved ones, and continues to inspire the way in which I approach grieving. One thing that makes her book so special is that it feels as though she is speaking directly to you and could be encouraging to those who are still unsure about meeting individually with a counselor, with the reminder that in fact, moving on or through our grief does not mean we have to let go of what occurred in order to move forward. With clients who have loved ones with cancer, are experiencing cancer or grief themselves, I have recommended books such as, “When Cancer Strikes a Friend,” by Bonnie Draeger, “The Grieving Brain” by Mary-Frances O’Conner, “The Beauty of What Remains” by Steve Leder, and “Between Two Kingdoms” by Suleika Jaouad. These books can be read at any point and maintain relevance in many ways as we go through our grief or cancer journey. It is important to remember that our journeys are individual, what may help one may not help another, but encourage you to remember that there are many paths to healing and you are never as alone as you may feel.

Countdown to Giving Tuesday: Join us in Making a Difference!

As the anticipation builds, we are thrilled to share that we are just hours away from Giving Tuesday—a global day of generosity and a chance for us all to come together to make a positive impact. At Cervivor, Inc., we are gearing up for this incredible day and want YOU to be a part of the magic!

Why Giving Tuesday Matters:

Giving Tuesday is more than just a day—it’s a movement that transcends borders and brings people together in the spirit of generosity. It’s a day to celebrate the power of giving back and making a difference in the lives of those who need it most.

For Cervivor, Inc., this day holds special significance. It’s an opportunity for our community to rally together and support our mission to end cervical cancer through awareness, education, advocacy, and support. Every donation, no matter the size, helps us take one step closer to a world free of cervical cancer.

How You Can Make a Difference:

This Giving Tuesday, we invite you to join our movement and be a part of something bigger. Here’s how you can make a meaningful impact:

  1. Donate: Your financial support enables us to continue our vital work in cervical cancer education, awareness, advocacy, and patient support. Make a donation here.
  2. Educate: Knowledge is power. Take a moment to educate yourself and others about cervical cancer prevention, early detection, and the importance of regular screenings. We have some great resources to check out here.
  3. Spread the Word: Share our mission on your social media platforms. Use the hashtags #Cervivor and #EndCervicalCancer to join the conversation and inspire others to get involved.
  4. Volunteer: Your time and skills are invaluable. If you’re interested in volunteering with us, reach out to us at [email protected].

Our Progress and Future Goals:

Thanks to the generosity of our community, we’ve achieved significant milestones in the mission to end cervical cancer but there is still much work to be done. With your support, we can:

  • Expand our outreach programs to reach more individuals and communities.
  • Provide crucial resources and support for those affected by cervical cancer.
  • Advocate for policies that promote cervical cancer prevention and awareness.

Join Us on Giving Tuesday:

The countdown has begun, and we can’t wait to see the impact we can make together on Giving Tuesday. Your support matters, and it’s the collective efforts of individuals like you that drive positive change.

Visit Cervivor.org on Giving Tuesday to make your contribution and be a part of the movement to eliminate cervical cancer.

Thank you for being an essential part of the Cervivor community. Together, we can make a difference.

Empowering Communities of Color: A Recap of the Fall Virtual Advocacy Retreat

The Fall Virtual Cervical Cancer Patient Advocacy Retreat for Communities of Color, held on October 28th, was an inspiring and informative event that brought together cervical cancer survivors and speakers dedicated to closing the gap in cervical cancer disparities. The retreat aimed to provide a platform for empowering and educating communities of color across the globe to become advocates in the mission to end cervical cancer. With a dynamic lineup of speakers, engaging and impactful conversations, and a clear advocacy action list, the retreat left attendees feeling empowered and equipped to make a difference in their communities and beyond.

The retreat’s success was undoubtedly due to the incredible speakers who graced the virtual stage. Each speaker brought unique insights and experiences to the table, making the event an unforgettable experience for all who attended:

  • Kimberly Williams, Cervivor’s Chief Diversity Equity and Inclusion Officer gave the opening remarks, shared how her personal journey has progressed over the last several years, and discussed the unwavering commitment Cervivor, Inc. has to diversity, equity, and inclusion in the mission to end cervical cancer.
  • Tamika Felder, Founder and Chief Visionary of Cervivor, Inc. inspired attendees to define their ‘why’ while sharing her personal experience of building what she didn’t have, the vision turned into a reality with the creation of the Cervivor, Inc. organization of nearly 19 years ago.
  • Nancy Peña, ONP-CG, CMI, BS, Director and Founder of Navegación de Pacientes Internacional, Inc. (NPI), was our morning keynote to share the important work to end cancer disparities by identifying and providing cancer patients support resources throughout the continuum of their care.
  • A Cervivor-filled panel moderated by Tiera Wade included the voices of Joslyn Paguio, Kadiana Vegee, and Karla Chavez to show their journeys from cervical cancer survivors to Cervivors.
  • Chicago-based duo, Dr. Nita Karnik Lee and Dr. Paris Thomas teamed up to share the importance or representation in clinical trials, how to access the opportunities available, and advocate for others to seek the care they deserve.
  • Dr. Jennifer Cunningham Erves, PhD, MPH, MAEd, MS, CHES, Director of Community Engaged Research at Vanderbilt-Ingram Cancer Center shared what attendees needed to know about the human papillomavirus (HPV) and the importance of cancer prevention through vaccination.
  • Dr. Jane Montealegre, Baylor College of Medicine, was the closing keynote to address the unique opportunities and challenges we face in eliminating cervical cancer.

Throughout the retreat, attendees from across the globe engaged in meaningful conversations and breakout discussions that shed light on various aspects of cervical cancer and advocacy. Several survivors logged in from islands in the Caribbean and a large group of survivors gathered together in Milicent Kagonga’s home, a Cervivor Africa Ambassador, to learn more about patient advocacy. 

But the retreat didn’t just stop at discussions; it moved the speakers and empowered attendees with a clear action list to ensure that the knowledge gained translated into impactful change:

  • Advocate for Improved Access to Healthcare: Support initiatives to increase access to cervical cancer screenings and vaccinations within communities of color.
    • Attendees expressed the importance of holding workshops to share screening and vaccination information not only for the public but to bridge the gap between patients and providers.
  • Education and Awareness Campaigns: Join Cervivor, inc. and participate in community-driven awareness campaigns to educate individuals on the importance of cervical cancer prevention, early detection, and self-advocacy.
    • Attendees expressed the need to bring men into the discussion as cervical cancer impacts the entire family structure and the very virus that causes 5 more cancers.
  • Community Engagement: Strengthen partnerships within their communities and collaborate with local organizations to promote cervical cancer awareness and advocate for accessible healthcare services.
    • Community outreach days with mobile screening and vaccination clinics are necessary to communities who do not have regular access.

In closing, the Fall Cervical Cancer virtual retreat has been a powerful journey of connection, support, and empowerment. As we reflect on the stories, insights, and shared strength of our attendees, we are reminded of the urgency to end cervical cancer once and for all. Together, we can make a difference. Whether you’re a cervical cancer patient, survivor, caregiver, or an ally in this fight, your voice and your actions matter. Join us in raising awareness, advocating for regular screenings and vaccinations, and supporting research for better treatments. Let’s unite to ensure that one day, cervical cancer is a thing of the past. Together, we can make this vision a reality. Join us in our mission by visiting cervivor.org, and together, we can help end cervical cancer.

Lastly, Cervivor, Inc. would like to thank our generous sponsors for supporting our mission of educating and empowering individuals impacted by cervical cancer to take action and create change in their local communities and beyond. Thank you to Seagen, Genmab, Roche Diagnostics, St. Jude Children’s Research Hospital HPV Cancer Prevention Program, and Genentech.

Caregiving is a Gift

Cervical cancer is an issue that affects countless individuals around the world. For those battling this disease, the journey is often filled with challenges, both physical and emotional. In the face of such adversity, the role of a caregiver becomes all the more essential. From the perspective of Cervivor, Inc., caregiving is indeed a gift, an invaluable act of love, support, and generosity that plays a pivotal role in the lives of those affected by this disease. We value the tireless efforts of caregivers who offer their unwavering support.

Caregivers are unsung heroes in the fight against cervical cancer. They are family members, friends, or healthcare professionals who selflessly step up to provide physical and emotional support to those diagnosed with this illness. The role of caregivers encompasses a wide range of responsibilities, including providing emotional support, assisting with daily tasks, offering companionship, advocating for necessary healthcare needs, and managing practical or logistical matters.

One Cervivor, Lindsay Gullatte-Lee shares how her daughter played an important role as a caregiver:

“My oldest daughter Aja Gullatte, on the days my husband couldn’t take me, drove me to the hospital for procedures and treatments before Jesus in the mornings, in the wee hours of the night, and any time in between. On top of being a Mom to her daughter and a wonderful big sis to her siblings, making sure the household was straight while I was in the hospital and the months after. She stepped in and paid bills when I couldn’t and I can’t imagine what it must have been like for her to see me the way I was. She got the brunt of it because I didn’t allow my other children to see me in the hospital or let them in on just how bad it really was. I don’t have favorites. As a mom, your heart is big enough to love all your children the same but she has been with me the longest, the most, and we have grown up together. I don’t know how I would have gotten through any of it without my husband and my children. They are who I fought so hard for and I’m extremely grateful to GOD for my life…I love you, my chocolate girl. I’m so blessed to be your Mom.”

Caregiving is a profound gift for several reasons:

  • Unconditional Love: Caregivers offer support out of love and a deep sense of responsibility. They make countless sacrifices to ensure the well-being of their loved ones, often putting their own needs on hold.

  • Strength and Resilience: Caregivers display remarkable strength and resilience in the face of adversity, uncertainty, and challenges of cervical cancer head-on, providing a source of inspiration for patients.

  • Enhanced Quality of Life: Caregivers significantly improve the quality of life for those going through cervical cancer. Their presence and care create an environment where patients can focus on recovery and healing.

  • Complementary Care: Caregivers work hand in hand with healthcare professionals to ensure patients receive holistic care. Their contributions complement medical treatments and therapies.

  • Emotional Support: The emotional support caregivers provide is immeasurable. Knowing that someone cares deeply and is there for them can boost a patient’s mental and emotional well-being, which can be instrumental in the healing process.

Where caregivers give so much to us, it is essential to recognize and support the caregivers as well. Providing caregivers with educational resources and support materials can help them navigate the complexities of cervical cancer and caregiving more effectively, offering respite care services allows caregivers to take breaks and recharge, reducing burnout and stress, caregivers may experience emotional and mental health challenges so access to counseling and support groups can help them cope with these issues, and lastly, acknowledging the vital role of caregivers within the community and society can go a long way in showing appreciation for their dedication.

Caregiving is a gift that plays an integral role in the journey of those affected by cervical cancer. Caregivers provide invaluable support, love, and strength during challenging times. We deeply appreciate and honor the contributions of caregivers in the challenges that come along with this disease. Through education, support, and gratitude, we can ensure that caregivers continue to play a pivotal role in the lives of those enduring cervical cancer, offering hope, comfort, and safety in their journey toward healing.

Bridging the Gap for Native American Heritage Month

November is not only a time for Thanksgiving, it is also National Native American Heritage Month. Let’s come together to celebrate the rich cultures and contributions of Native Americans while shedding light on the importance of cervical health and the disparities surrounding cervical cancer diagnosis in Native American communities. 

Cervical cancer is a disease that impacts individuals of all backgrounds, including those in the Native American community. Cervical cancer disproportionately affects underserved and marginalized populations, including Native American women. These disparities are often due to limited access to healthcare, educational resources, and cultural barriers. Native American communities, like many others, face challenges in cervical cancer prevention and early detection which can detect abnormal changes in the cervix early, when they are most treatable.
Beverly is a Cervivor community member who is a part of the Easter Band of Cherokee Indians. As we acknowledge National Native American Heritage Month we take a look at Beverly’s Cervivor story.

“When I learned at age 40 that I had stage IIIB cervical cancer, it sounded like a death sentence. I remember thinking “My children are too young to be left alone!”

Immediately, I went into a series of traditional ceremonies with my community. During sweats, I pictured the tumor melting. My children sang healing songs. But I didn’t pray for instant healing—I prayed for strength and clarity. At the sun dance, where prayers were said for me, I received items like eagle plumes and prayer ties. The water ceremony was also very powerful—and the hospital showed respect for it. I can never forget the amazing change the ceremony brought to the lymph node surgery I had less than an hour later. My traditions are everything to me, and they were what I held onto during this time.”

Kristine, a Cervivor community member representing the Navajo Zuni Clan shares:

“When I was diagnosed with cervical cancer I had to lean on my heritage for my source of strength. It was a great reminder of the those that came before me and what it meant to have their blood run through mine. Navajo women are the matriarch and we (all Navajo’s) introduce ourselves by clan which identifies and defines relationships between individuals and families. When you meet someone with one or more of your same clan, you become related by clan. You can also tell a region by someone’s clan. 

According to the American Indian Cancer Foundation, American Indian and Alaska Native women are nearly twice as likely to develop cervical cancer compared to white women and four times as likely to die from it. Those are statistics I would like to help change. Cervical cancer is preventable. I share my story to remind you to be proactive with your health. Make those uncomfortable gynecologist/prevention visits and ask about the HPV vaccination for your child(ren). ”

Through the work with Cervivor, Inc. and community partner organizations, we can reduce and close the disparity gap:  

  • Education: Promote awareness about cervical cancer and its risk factors within Native American communities. Partner with local health organizations, community leaders, and tribal authorities to host workshops, webinars, or informational sessions and include patients and survivors to share their stories and experiences.
  • Access to Care: Advocate for improved access to healthcare services, including cervical cancer screening and vaccination, in underserved areas with high Native American populations.
  • Cultural Sensitivity: Tailor educational campaigns to respect and acknowledge the cultural beliefs and practices of Native American communities. Building trust and understanding is essential for effective outreach.
  • Support and Resources: Collaborate with healthcare providers and organizations to ensure that Native American women have access to affordable screenings and follow-up care, if necessary.
  • Encourage Vaccination: Promote HPV vaccination to protect young girls and boys from the virus, ultimately reducing cervical cancer rates.

We can make a significant difference in the lives of Native American communities and all those affected by this preventable disease. Let’s honor our past while working towards a healthier future for everyone. Do you identify as Native American or Alaskan Indian? Share your Cervivor story today!

Celebrating Team Cervivor’s Dedication to Cervical Cancer Prevention

We are thrilled to share some incredible news that fills our hearts with pride and gratitude: Our passionate and dedicated Founder and Chief Visionary, Tamika Felder, and our Chief Diversity Equity and Inclusion Officer, Kimberly Williams have both been recognized with awards from the American Cancer Society for their unwavering commitment to cervical cancer awareness and prevention. This recognition is a testament to our incredible work, and it’s a reason for all of us to celebrate.

The American Cancer Society’s acknowledgment of Team Cervivor’s efforts is confirmation of the impact we are making on this critical issue.

Kimberly Williams was recognized with the Lived Experience Ambassador Award. She says, “What a surprise and honor to be acknowledged in this manner. Thank you ACS! This reminds me that my story matters and changes lives! I am an ambassador for change! Together we are better. My Cervivor story has power!”

And Tamika Felder was awarded with a Mentor-Mentee award for her service as a steering committee member with the National HPV Vaccination Round Table and her 2023 Emerging Leader, Kiara Long, MPH, CHES. Kiara shares, “I attended the annual meeting for the American Cancer Society National HPV Vaccination Roundtable and the American Cancer Society National Roundtable on Cervical Cancer in Atlanta this week. I was overjoyed to have received the Mentor-Mentee Award with Tamika Felder. Words can’t express how grateful I am for the opportunity to learn from her. I am honored to be a part of the Emerging Leaders program with such a dynamic group of women!”

Our cancer journey is like any advocacy endeavor. It has its highs and lows but it is through unwavering dedication and imperative partnerships that we’ve reached this milestone. The tireless commitment to raising awareness, offering support, and advocating for prevention, early detection, and vaccination has not gone unnoticed. Team Cervivor’s collective efforts along with the partners at the American Cancer Society have helped save lives, educate communities, and support those impacted by cervical cancer.

We know that this recognition isn’t just all about the accolades, it serves as a reminder that our work is truly making a difference. Our voices are being heard, and our actions are creating change. Together, we have helped make significant strides in cervical cancer prevention, and we have no doubt that the future holds even greater achievements for our community.

Let’s continue our journey together, advocating for cervical cancer prevention, supporting those who need it, and sharing our voices to make a difference. We look forward to celebrating many more successes with our community at large. Together, we can and will make a difference.

Mind, Body, & Spirit: The Importance of Self-Care

As a cervical cancer patient and survivor, you’ve shown immense strength, resilience, and courage, but your self-care journey doesn’t end with a cancer diagnosis or even at the end of treatment; it’s a continuous life path toward self-discovery and healing.

Self-care is essential to help you heal physically and nurture your mental and emotional well-being. Check out these five practices for cervical cancer patients and survivors that promote self-care.

Prioritize Mental Health and Wellness

Your mental health is just as important as your physical well-being. After enduring something like cervical cancer, you may experience a wide range of emotions, including anxiety, fear of the unknown or the “new normal,”, and even survivor’s guilt. Prioritizing your mental health is crucial to help you navigate these complex feelings. 

You can accomplish these things by: 

  • Seeking Professional Help: Reach out to a therapist or counselor who specializes in cancer survivorship. They can provide valuable guidance and support as you process your emotions and concerns.
  • Joining a Support Group: Connecting with other cervical cancer patients and survivors can be incredibly healing. Sharing your experiences and hearing others’ stories can reduce feelings of isolation and provide a sense of community. Cervivor offers a virtual online support group on the second Tuesday of each month. Sign up on our events page here.
  • Practicing Mindfulness: Mindfulness meditation and deep breathing exercises can help you stay present and reduce anxiety. Apps and online resources make it easy to get started.

Read for Healing

Reading can be a powerful form of self-care for cervical cancer survivors. It allows you to escape into different worlds, gain knowledge, and find solace in the written word. Start by: Choosing some inspirational memoirs. Many cancer survivors have shared their experiences in memoirs or self-help books. Reading these can provide you with insight, inspiration, and a sense of connection. Or explore fiction and fantasy. Sometimes, losing yourself in a good novel or immersing yourself in a fantasy world can provide a much-needed break from reality. Reading fiction can be a great way to relax and recharge. We strongly believe knowledge is power. Take some control back by learning about nutrition after cancer. Reading about nutrition can help you make informed choices about your diet and overall health. Jump in and join the Cervivor Book Club!

Get Creative

Engaging in creative activities can be therapeutic and fulfilling. It allows you to express your emotions and discover new passions. Start a journal to help you process your feelings and reflect on your journey as a cervical cancer survivor. It’s a safe space to express yourself freely. Exploring art therapy with drawing, painting, or crafting as it can be immensely cathartic. You don’t need to be a professional artist; the act of creating can be a soothing and expressive outlet. Or considering learning a new skill or hobby. Whether it’s playing a musical instrument, cooking, or dancing, mastering something new can boost your self-esteem and provide a sense of accomplishment.

Get Physically Active

Maintaining a regular exercise routine is essential for physical and emotional well-being. It helps with managing stress, improving mood, and maintaining a healthy weight. Depending on your physical condition, start with gentle exercises like yoga or walking. These activities can improve flexibility and strength without putting too much strain on your body. To ensure your safety and well-being during and post cancer treatment, look for cancer-specific exercise programs and classes designed to address the unique needs and concerns of cancer patients and survivors. These classes often provide a supportive and understanding environment along with modifications to fit your physical limitations. Survivor Slimdown is powered by Cervivor, Inc. and lead by Cancer Exercise Specialist and cervical cancer survivor, Patti Murillo-Casa.

Cultivate a Supportive Environment

Surrounding yourself with a supportive and caring community is vital for your healing journey. Connect with friends and family who offer encouragement and empathy. Start by communicating your needs. A lot of us fear being seen as weak or a burden when we ask for help. We’re here to say don’t. Don’t be afraid to communicate your needs with your loved ones. Let them know how they can support you on your path to recovery.

Another way to cultivate a supportive environment is to get involved with your local community and beyond. Many organizations and hospitals host events specifically for cancer patients and survivors. Attending these gatherings can provide you with opportunities to connect, share, and celebrate your journey as well as discuss the hard things you face on a daily basis. Connect with Cervivor at upcoming events or consider hosting your own MeetUp on behalf of Cervivor! (Email us for more information).

Remember, self-care is a lifelong commitment to nurturing your physical, mental, and emotional well-being. Prioritizing your mental health, finding peace in reading, and expressing yourself through creativity can all be powerful tools in your healing journey. Additionally, staying physically active and cultivating a supportive environment can further contribute to your overall well-being. And as another reminder, you are never alone. There are many resources and communities ready to offer support and encouragement. Embrace these self-care practices and various programming put on by Cervivor. Together they will help you thrive as a cervical cancer patient and survivor and continue your journey towards a healthier and fulfilled life.

Cervivor School Seattle Reflections

In the heart of the Pacific Northwest, amidst the city landscapes of Seattle, Washington, a group of resilient cervical cancer survivors recently gathered to embark on a patient advocacy journey that transcended the boundaries of a traditional classroom.

Cervivor School, an immersive patient advocacy training program for cervical cancer survivors hosted by Cervivor, Inc. trained 23 new attendees with a deep dive into the psychosocial aspects of cervical cancer and paired it with the latest science to help them understand the scope of the national and global disparities. In this blog post, we will take you on a reflective journey through the empowering experiences, inspiring stories, and invaluable insights gained during the Cervivor School in Seattle:

“I went to Cervivor School, afraid of not belonging, but I returned with a feeling of sorority and acceptance. Cervivor School exceeded my expectations by far. There was an energy and a contagious passion. I felt enlightened and empowered like never before. After hearing the stories of these extraordinary women, it gives me more reasons to do something to end cervical cancer.” – Claudia Perez-Favela, California

“This past weekend was amazing. Cervivor School was so informative. The knowledge gained is beyond words. I felt so empowered being in a room filled with so many powerful women and the love and support given is just fantastic. I felt a sense of belonging from the get go, there was no awkward moments in the room and I loved that. I admired how everything tied in nicely. I applaud Team Cervivor for the work they put into Cervivor School to make it a reality.  Once again, thank you for allowing me to be part of this.” – Nymphia Emmanuel, St. Lucia

“Firstly, I was so privileged and grateful for the opportunity to attend Cervivor School in Seattle Washington. Meeting with other Cervivors, sharing our stories encouraging each other to be empowered, and learning together how we can all make a difference in our society by advocating for others against cervical cancer and HPV. My personal goal is to gain my voice, knowing that I have the power to help eradicate cervical cancer mortality rates. Sharing my story and being a “Pillar” of hope to someone is making a difference.” – Davina Woolward, Guyana

“It was an incredible opportunity to connect with fellow survivors and advocates with whom I have shared journeys and passions. The sense of belonging and support within the Cervivor community is a big extended family and the knowledge and skills I gained during my time there were invaluable. Learning from experts in cervical health and hearing the inspiring stories of resilience from others was not only educational but deeply empowering. It was a reminder that I am part of a strong, compassionate, and dedicated network working together to raise awareness about cervical cancer, and the HPV vaccination and make a positive impact and a change in women’s health. Cervivor School left a permanent mark on me, and I am grateful for the chance to be a part of such an incredible community.” – Julianna Colley, Georgia

Before we shift our focus to celebrating the remarkable individuals who have earned the prestigious title of Cervivor Champion, we want to extend our heartfelt gratitude to the dynamic speakers and passionate advocates who graced our event with their insights and experiences – Thank you to Dr. Linda Eckert of the University of Washington, Dr. Hyo Sook Bae of the National Cancer Institute, Roshanda Pratt of the REP Network, Kiara Long of the American Cancer Society, Dr. Carolyn Kay of Roche Diagnostics, Dr. Sarah Villarreal of the University of Washington, Dr. Leeya Pinder of the University of Cincinnati, Christina Turpin of the National HPV Vaccination Roundtable, Dr. Yolanda Evans of Seattle Children’s Hospital, Kate Weissman, Cervivor Ambassador, and the incredible team at Cervivor for the impactful conversations and necessary information to become well-informed patient advocates. A special thank you also goes out to Mike Hill and Sue Collins of Moonshine Agency for selecting Cervivor School as an exclusive film screening for Conquering Cancer in the United States.

Next, we extend our warmest congratulations to the exceptional individuals who have been named as the newest Cervivor Champion award recipients. Your dedication, resilience, and unwavering commitment to the fight against cervical cancer have not only transformed your own lives but have also left an indelible mark on our community.

As Cervivor Champions, you embody the spirit of advocacy, turning your personal journeys into powerful forces for change. Your voices and stories inspire, educate, and empower others to take control of their health and join in the mission to end cervical cancer. We celebrate your achievements, and we look forward to witnessing the positive impact you will continue to make in the world of cervical cancer advocacy.

Congratulations to Anna Ogo, Anne Zajic, Cindy Trice, Josyln Paguio, and Kadiana Vegee!

In our relentless pursuit to end cervical cancer, the voices of patient advocates are not just valuable; they are absolutely necessary. Patient advocates are the heart and soul of our movement, the driving force behind the progress we’ve made, and the torchbearers of hope for a future free from this devastating disease. Their lived experiences, their determination, and their unwavering commitment serve as inspiration and hope for individuals facing a cervical cancer diagnosis, and as a powerful catalyst for change within healthcare and policy systems.

Patient advocate voices remind us that behind every statistic is a human life, and that the fight against cervical cancer is not just a medical journey, but a deeply emotional taxing one. As we move forward, let us continue to amplify these voices, to listen, to learn, and to stand together in the unshakable belief that one day we can, and will, bring an end to cervical cancer.

Together, we are a force to be reckoned with, and with each voice that joins our mission, we come one step closer to a world where cervical cancer is but a distant memory.

Lastly, Cervivor, Inc. would like to thank our generous sponsors for supporting our mission of educating and empowering individuals impacted by cervical cancer to take action and create change in their local communities and beyond. Thank you, Hologic, Seagen, Genmab, and Genentech.

Cervivor School Heads to Seattle

Excitement is in the air as Team Cervivor and several attendees from across the globe prepare to converge in Seattle, Washington, this week for Cervivor School!

We are thrilled to welcome an incredible group of survivors, advocates, and speakers who are dedicated to making a difference in the mission to eliminate cervical cancer.

Cervivor School is a unique opportunity for us to come together, share our experiences, and gain valuable knowledge that will empower us as patient advocates to drive change and raise awareness about cervical cancer prevention and the many facets of being a Cervivor. It’s a place where we can learn, grow, and connect with one another, all with the shared goal of eliminating cervical cancer.

Over the course of this event, we will engage in meaningful discussions, hear from expert speakers, and participate in workshops and activities designed to strengthen our advocacy efforts. Whether you’re a seasoned Cervivor or attending for the first time, this is a chance to expand your knowledge, network with like-minded individuals, and become an even more effective advocate for cervical cancer awareness and prevention.

We would like to extend our heartfelt gratitude to everyone who has made this event possible, including our generous sponsors and community supporters as well as the dedicated Cervivor team. Together, we are creating a world where cervical cancer is front and center in awareness so it can become a thing of the past.

If you would still like to give to our Cervivor School fundraiser, there is still time! Please make a donation directly through our website or through our Classy fundraising page. Every donation matters!

As we gather in Seattle, let us embrace the spirit of unity and collaboration that defines the Cervivor community. Together, we can drive change, support one another, and work towards a future where no one has to face the challenges of cervical cancer.

Safe travels to all attendees, and we look forward to seeing you in Seattle!

It’s Time to Spark More Below the Belt Conversations

Cancer is a life disrupter that can test one’s physical, emotional, and mental strength to the brink. Those who have endured this relentless disease and emerged often feel called to do something more so others don’t have to go through the same thing. Sharing their story becomes an invaluable source of hope, inspiration, and surprisingly, healing. 

Anna, Communities of Color Retreat
Ashley, HPV Cancer Survivors School


This is the importance of sharing your story and sparking more below-the-belt conversations.

Breaking the Silence
Gynecologic cancer often carries with it a heavy stigma, and many patients and survivors initially find it challenging to talk openly about their diagnosis and treatment. However, sharing your story helps break the silence surrounding these cancers, making it a topic that is easier for others to learn and discuss. This shame resilience fosters a sense of community and support, as others facing similar challenges can relate to your experiences.

Providing Comfort and Hope
This journey can be a frightening and isolating time, both for patients and their loved ones. When you share your story, you offer comfort to those who are in the midst of their own experiences. Your insights provide them with hope and reassurance that they, too, can overcome this formidable adversary. 

Empowering Others
Your story can empower others to take control of their health. It can motivate individuals to prioritize regular check-ups, engage in healthier lifestyles, and advocate for themselves when it comes to their medical care. By sharing your journey, you become a beacon of strength and resilience that encourages others to take action.

Raising Awareness and Changing the World
Your story can contribute to increased awareness about the disease. By describing the symptoms you experienced, the importance of early detection, and the challenges you faced during treatment, you can help educate others about cancer prevention and the need for regular screenings and it can even improve the way the treatment is provided in the future. This knowledge can ultimately save lives.

Milicent & Sally making community connections in Kenya
Karla speaking to her Catholic school in Honduras


Sharing your cancer journey as a patient and survivor is a profoundly meaningful and impactful endeavor and can make a lasting difference in the lives of others. Cervivor encourages you to share your story today starting with our easy-to-follow template. It might be exactly what someone needs to hear to find the strength to face their own cancer battle with courage and determination.

Join us in our last Gynecologic Cancer Awareness Month Below the Belt Conversations live on the Cervivor Facebook page on Thursday, September 21st starting at 7 PM EST!

September is National Hispanic Heritage Month

As we progress through one important awareness month, we intersect with another: National Hispanic Heritage Month.

During this time, we are honored to embrace the vibrant colors, rich traditions, and contributions of the Hispanic community. Cervivor stands in solidarity with our Hispanic and Latinx members in raising awareness about cervical cancer within this population.

National Hispanic Heritage Month, celebrated from September 15th to October 15th, provides us with an opportunity to not only celebrate the incredible cultural diversity and history of Latinx individuals but also to shed light on important health disparities that affect this community.

Let’s Talk About It

Cervical cancer is a highly preventable and treatable disease, yet it disproportionately affects Latinas in the United States. Here are some key statistics that highlight this issue:

  1. Higher Incidence: Latinas have a higher incidence rate of cervical cancer compared to non-Hispanic white women. This means they are more likely to develop cervical cancer.
  2. Lower Screening Rates: Latinas are less likely to undergo regular cervical cancer screenings, such as Pap tests and HPV tests, which can detect cervical cancer and the human papillomavirus at an early and treatable stage.
  3. Increased Mortality: Latinas face a higher mortality rate from cervical cancer, primarily due to late-stage diagnosis.

These statistics underscore the importance of raising awareness and promoting regular cervical cancer screenings within the Latinx community. Regular screenings are crucial for early detection and intervention, which can save lives.

Get Involved

At Cervivor, we are committed to supporting all individuals affected by cervical cancer, including those within the Latinx community. We offer a safe and inclusive space where you can find resources, share your stories, and connect with others who understand your journey.

Here are a few ways you can get involved during National Hispanic Heritage Month and beyond:

  1. Are you a cervical cancer patient, survivor, or thriver? Share your Cervivor story. Your story has the power to create change.
  2. Support and empower others to schedule their cervical cancer screenings.
  3. Knowledge is power. Check out all the amazing educational resources on our website and content across our social media platforms. Share it with your networks to help spread awareness.
  4. Stay connected with Cervivor to learn more ways to advocate and ultimately, end cervical cancer.

As we celebrate the vibrant and diverse Latinx culture during National Hispanic Heritage Month, let’s also take a moment to remember the importance of health and well-being by empowering our health below the belt. Regular cervical cancer screenings can save lives, and Cervivor is here to provide support and resources to help anyone on their journey.

Cervivor thanks you for being a part of the community, and together, we’ll make a difference in the cervical cancer disparity gap among Latinas.

Empower Your Health Below-the-Belt

As fall quickly approaches, we find ourselves entering a month of profound significance for Cervivor and all those impacted by gynecologic cancers. September is not just another month; it’s Gynecologic Cancer Awareness Month, a time dedicated to raising awareness, educating, and advocating for those affected by gynecologic cancers. It’s a month where we come together to make our voices heard and support one another in our journey towards better health and well-being.

Did You Know?

Gynecologic cancers, which include cervical, ovarian, uterine, vaginal, and vulvar cancers, impact the lives of thousands of women and individuals with female reproductive systems each year. The statistics may be alarming, but they underscore the importance of dedicating a month to raise awareness and promote early detection:

  • In the U.S. alone, an estimated 98,000 women will be diagnosed with a gynecologic cancer each year.
  • An astonishing 30,000 lives will be taken by the disease.
  • Gynecologic cancers are often diagnosed at advanced stages, making early detection crucial for improved outcomes.
  • Each of these cancers comes with its unique set of challenges, but they all share the common thread of affecting the lives of those we care about.

Our Role in Gynecologic Cancer Awareness Month

Cervivor plays a pivotal role in the fight against gynecologic cancers. We are not just a support network; we are a community that empowers survivors, advocates for change, and educates the public about the importance of prevention and early detection. Here’s how we’re making a difference:

  1. Support and Empowerment: Cervivor provides a safe space for survivors to share their stories, connect with one another, and find solace in knowing they are not alone. Through our online platforms, events, and resources, we empower individuals to take control of their health and well-being.
  2. Education and Awareness: Our organization is dedicated to spreading awareness about gynecologic cancers, with a special focus on cervical cancer. We offer educational resources, campaigns, and outreach initiatives to ensure that women and individuals are informed about the risks, prevention, and early detection methods.
  3. Advocacy: Cervivor is at the forefront of advocating for policy changes and improved access to healthcare services. We work tirelessly to promote HPV vaccination, regular screenings, and equitable healthcare for all. Become a partner in purpose with Cervivor today!

How Can You Get Involved?

  • Share Your Story: Your story is a powerful tool for raising awareness. Share your journey, your triumphs, and your challenges on social media, using the hashtags: #GCAM, #Cervivor, #WeAreCervivor, #EndCervicalCancer.
  • Educate: Take the time to educate yourself and others about gynecologic cancers. Knowledge is the first step towards prevention and early detection.
  • Support Cervivor: Consider making a donation to Cervivor or participating in our fundraising initiatives. Your support enables us to continue our mission to empower, educate, and advocate for those affected by gynecologic cancers.
  • Join Our Community: If you or someone you know has been affected by gynecologic cancer, join our community. Together, we can make a difference and support one another in our journeys.

As we progress through Gynecologic Cancer Awareness Month, let us remember that together, we are a powerful force for change. By raising our voices, sharing our stories, and supporting one another, we can make strides in the fight against gynecologic cancers. Thank you for being a part of the Cervivor community, and for standing with us in this important cause. Stay tuned for our upcoming events and activities throughout the month of September!

Empowering Change for Cervical Cancer Survivors

Give 8/28 is a national giving day dedicated to supporting Black-led nonprofits. Cervivor is sharing the incredible impact of your support on our mission to eradicate cervical cancer and improve the health outcomes of Black women and marginalized communities. 

At Cervivor, we are committed to addressing the disparities in cervical cancer education, treatment, and prevention among Black women. Our mission is to empower individuals with knowledge and resources so they have access to care, promoting early detection, and ultimately, reducing the burden of cervical cancer in our communities.

1. Diversity, Equity, and Inclusion: As Cervivior continues its longstanding commitment to diversity work with the addition of Kimberly William’s role as the Chief DEI Officer, Cervivor has expanded and developed four diverse private groups to provide a safe, relatable space for members to express how cervical cancer impacts their lives and their communities.

2. Advocacy and Education: Along with our premiere educational patient advocacy program, Cervivor School, and the Cervical Cancer Advocacy Retreat for Communities of Color, our team and dedicated volunteers have been working tirelessly to raise awareness about the importance of regular screenings and HPV vaccinations. By participating in community events, health fairs, and online campaigns, we aim to normalize conversations around all things cervical cancer.

3. Support for Cervical Cancer Patients, Survivors, and Thrivers: We offer emotional and practical support to those diagnosed with cervical cancer. From connecting patients with our support group, Creating Connections, to providing educational resources, we strive to create a strong network of empathy and care during their journey no matter where they are located.

Give 8/28 is a pivotal opportunity for us to expand our reach and amplify our impact even more. Your generous contribution on this day will directly enable us to:

  • Expand our educational initiatives to reach more communities.
  • Provide increased access to diverse, equitable, and inclusive spaces for those impacted by cervical cancer.
  • Strengthen our advocacy efforts to eliminate disparities in cervical cancer outcomes.

How can you help?

1. Donate: Visit our donation page on August 28th to contribute towards our Give 8/28 campaign. Your support, no matter the amount, will make a significant difference in the lives of those we serve.

2. Spread the Word: Share our mission and the importance of Give 8/28 with your friends, family, and colleagues across all social media platforms. Together, we can create a ripple effect of positive change.

3. Volunteer: If you’re passionate about cervical cancer and health equity, consider joining our team of volunteers. Your skills and time can contribute to making a lasting impact.

By supporting Cervivor on Give 8/28, you are directly contributing to our efforts to eliminate cervical cancer disparities within our communities. Together, we can achieve better cervical cancer outcomes for Black women and marginalized populations.

We thank you for your unwavering support. We look forward to standing beside you on Give 8/28 and beyond.

National Patient Advocacy Day Recap

Last week presented to be a busy week for patient advocacy. Wednesday was recognized as National Nonprofit Day where Cervivor was chosen as a nonprofit partner of choice through the Kendra Gives Back program through Kendra Scott. The Tampa store location hosted Avi Grant-Noonan, a cervical cancer survivor and patient advocate. Together, we fundraised around $250 for Cervivor in honor of the national awareness day. Avi states, “It was amazing! We had such a great time.”

And this past Saturday was recognized as National Patient Advocacy Day. Our Cervivor community was in action painting coast-to-coast teal and white. The event blended a collaborative approach to cervical cancer patient advocacy including patients, survivors, medical professionals, and industry partners. This day was meaningful for the Cervivor community as it allowed for them to discuss patient advocacy and its importance, along with understanding the impact of sharing their stories in their communities. Attendees were encouraged to spark the conversation surrounding cervical cancer and create change in their local communities.

Community members from Cervivor Caribbean and Cervivor Africa tuned in via the virtual meet-up. This brought about awareness of disparities that members face even in the global community. This open discussion of disparities helped attendees work together to encourage, develop, and plan in adding to our mission to eliminate cervical cancer. Cervivors and industry partners left this event (in-person and virtual) with a reminder that no one fights alone. 

Phyllis Adams (NY Event Attendee): “What a great event meeting with other Cervivors and sharing our unique stories!!! It was a pleasure meeting you in person and allowing me to share my story! Awesome day!”

Anna Ogo (WA Event Co-Host): “We had a blast We covered so many important topics – scanxiety, mental health, dilators, support for caregivers, cervical cancer screening guidelines, HPV, stigma, vaccination, education, ADVOCACY, and the list goes on…”

Sara Johney (VA Event Co-Host): “What a great day! We had an amazing time meeting Cervivor sisters in Fairfax Va! What a perfect way to celebrate National Patient Advocacy Day: Fairfax, VA! Thank you to Caboose Commons for hosting us!”

Lorie Wallace (MI Event Host): “What a wonderful event. Considering there are over a million people right now who are attending the world’s largest car cruise just down the street from this event, I’m very thankful that I got a wonderful group together. Thank you. Happy National Patient Advocacy Day: Metro Detroit, Michigan!”

Check out more event photos below!


On National Nonprofit Day

Since 2017, National Nonprofit day has been recognized on the 17th day of August annually. This day is set aside to acknowledge nonprofit organizations and the impact they have made on the communities they serve. Here at Cervivor, we are reminded of the impact that nonprofits have on communities by making the world a better place. This day provides us with an opportunity to reflect on the vital role that nonprofits play in addressing societal challenges, fostering empathy, and creating positive change. From local grassroots initiatives to international humanitarian efforts, nonprofits come in all shapes and sizes, yet they share a common purpose – to uplift, inspire, and provide aid where it’s needed most. 

Founder and Chief Visionary of Cervivor, Tamika Felder, created this nonprofit organization understanding the importance of cervical cancer education, empowerment, advocacy, and support. Originally founded as a small support group, it now spans across the globe spreading awareness, support, and advocacy for those that have been impacted by cervical cancer. As a global organization Cervivior continues to work diligently to ensure that no one feels alone in their fight. No matter where in the world you are, if you’ve been impacted by cervical cancer, Cervivor has a place for you, with a community that will support you throughout your journey. This organization understands the importance of “community” even when it is virtual, and continues to create opportunities for life long connections and bonds. 

Sophie shares how this organization has impacted her life as a Cervivor community member in the UK:

“Cervivor has helped me to not feel alone. I met my wonderful friend in this group and we have journeyed together for the last 2 years almost. I am from the UK and currently visiting her in Canada. Forever thankful for the beautiful friendship I’ve gained from this group. Cancer was nowhere near as lonely as it would have otherwise been.”

Additionally, the Comfort Care and Compassion Program was officially launched on this day two years ago with the help of Community Engagement Liaison, Morgan Newman and a committee of volunteers. The program was developed to support those impacted by cervical cancer at any stage of their journey. It served 121 individuals by the end of 2021.

Now, in the eighth month of 2023, it has served nearly 200 individuals with tote bags, support resources, words of encouragement, and more. Cervivor now offers the request form via the website allowing more patients, survivors, family members and friends, as well as care teams to request the right support for their loved ones.

Understanding the continuous need to expand our footprint, Kimberly Williams was added as the Chief Diversity, Equity, and Inclusion Officer here at Cervivor. In this role, she is a key contributor in recommending, developing, implementing and managing Cervivor’s U.S. and global diversity, equity, and inclusion initiatives. This organization understands that diversity is a strength and when these differences are embraced it can encourage better results in our communities. 

As Cervivior continues its longstanding committment in diversity work with the addition of Kimberly’s role, Cervivor has developed four diverse private groups to provide a safe, relatable space for members to express how cervical cancer impacts their lives and their communities. The four private groups include: Cervivor Africa, for those that were born, raised, or reside in the continent of Africa; Cervivor API for those who identify as Asian or Pacific Islanders; Cervivor Caribbean, for those that were born, raised, or reside in the Caribbean islands, and Cervivor Noir, for those that identify as Black. Adding the aforementioned groups provides us with access to communities through education and trained patient advocates who can provide influence to ultimately end cervical cancer.

We could not work toward our mission to ultimately eradicate cervical cancer without your generous support. On this special day, we encourage you to join the movement and show your support for this nonprofit organization. Here are a few meaningful ways you can get involved:

  • Volunteer: Dedicate your time and skills to a cause you care about. Sign up here.
  • Donate: Every little bit counts. Consider making a financial contribution to Cervivor to help further our mission.
  • Spread Awareness: Use the power of your voice and social media to raise awareness about cervical cancer. Share stories, impact, and accomplishments to inspire others to get involved too!
  • Attend Events: We have plenty of amazing events coming up on the calendar. Check it out and register to join us!

As we celebrate National Nonprofit Day, let us express our deepest gratitude for being a part of this journey with us. Together, we can continue to uplift one another and drive positive change that ripples far beyond our immediate reach and one day, eliminate cervical cancer once and for all!

Our Light at the End of the Tunnel

I was informed I wouldn’t be able to carry children in the same appointment I was told my cervical cancer was Stage IIB at the age of 30. Luckily, my badass oncologist provided me with options to have biological children down the road via surrogacy. I immediately started IVF and froze nine healthy embryos.

Years later, when the concept of survival was on more solid ground, we began our surrogacy journey. We contacted an agency and learned the process. Long, grueling, and expensive, typically in the $80-$100,000 range. I’m sorry what? We moved forward because, simply, we were able to. So many women and loving couples don’t have this privilege.

Finding our surrogate was an arduous and awkward process. There is no manual for meeting someone that is going to carry your child. “Hi, we’re Kate and Matt. Can we put our baby inside of you? Here’s an orchid to show our appreciation of your consideration.”

When we finally got matched with J, our surrogate whose name I’ll keep to just us, we were so relieved. A mom to three of her own and a foster mom, she is just a special woman. She was so sensitive to our situation. She had never been a surrogate before so we knew we would be stumbling through this together, but we had a tight bond from the get-go. We trusted each other. We always put each other first.

And that trust was tested when it was time for all the necessary legal protocols. Even though Massachusetts is a surrogacy-friendly state for both intended parents and surrogates, the legal process is extensive, to say the least. The lawyers propose endless scenarios you need to agree upon. The most trying topic for discussion is abortion or reduction if there are multiples, as you need to be aligned on all possible situations that may rise. Legally, J’s decisions would be the only one honored while she carried the fetus. We had no legal rights until the baby came out. Luckily, we were fundamentally aligned on decisions we would make if faced with these difficult circumstances. Other things to consider were how the birth would go, what we were comfortable with her doing or not doing during pregnancy, and then of course her payment structure.

Never did I think starting a family would require signing on so many dotted lines and having to rely on the ideologies of another woman to dictate how we would make decisions about our family. This is the reality of surrogacy. The experience is no longer just yours; it’s shared.

Once we finally got everything signed, J started IVF. Right before we started, there were rumblings about a global pandemic. At the time we didn’t understand the gravity, so we proceeded. But midway through our cycle, COVID-19 started taking more lives, and the world shut down. We made the heart-wrenching decision to stop everything. I broke down. We had been trying to start a family for 18 months at that point, and we were still so far from it becoming a reality. We consoled each other and just focused on protecting ourselves.

In July, IVF clinics began opening as studies were showing COVID-19 had minimal impact on a fetus. After agonizing over the decision, we started another cycle. We transferred two of our healthiest embryos, one boy and one girl. On transfer day, Matt and I met J outside the hospital and FaceTimed during the procedure. Most people get to have sex while making a baby. Us? A sterile waiting room at a hospital on FaceTime. Good times. J was incredible that day. She made us matching shirts and just kept saying, “This is going to happen!” We soaked in her optimism.

We began the dreaded “two-week wait.” I was so paralyzed with anxiety those two weeks it was hard to focus. There were also multiple pregnancy announcements among family and friends during that time too which was so wonderful and overwhelmingly difficult.

Because let me be very clear about something – when you’re in the thick of this and someone shares a pregnancy announcement with you, you feel everything. You’re happy. You’re gutted. You’re thrilled. You’re devastated. You feel every single emotion at the highest level. Very few people say it’s ok to feel this way. But I’m here to say it’s ok. You can be thrilled for the people you love while feeling devastated. We are humans with complex emotions, we aren’t robots. Feel everything. You’re not a terrible person. But maybe stay off social media. That’s my best advice.

Fortunately, at the end of the wait, we received amazing news. J was pregnant. We were pregnant. With twins? They didn’t know. We would have to wait for our scan. A few days later, J called to say she was bleeding. A lot. Our hearts stopped. The next day we went to the hospital for a scan, but with COVID protocols I wasn’t initially allowed in with her. J stood up to the security guards and proclaimed, “She’s coming with me, she’s the mother!” They let us through. I had never appreciated her more than in that moment.

With Matt on FaceTime in the parking lot, not with me holding my hand like how we normally face everything in life, we learned it was a hematoma which is very common with IVF. No major risk, but they would keep an eye on it. But then we also saw, for the first time, our baby. One baby. We felt a million things. Heartbroken one of the embryos didn’t take, thrilled one did. I just wanted to be with Matt. I felt horrible showing J my disappointment both didn’t take but then when we got back to the waiting room, she looked at me and said, “I was really hoping they both took for you.” I let the tears flow. She understood how momentous that moment was. It felt like a massive loss and victory all at once. I met Matt back in the parking lot and cried. But we were pregnant with a healthy singleton who we found out weeks later was a baby girl. And woah, that changed everything.

The next ten months were as wonderful as they were hard. What was it like having someone else carry my child? Surreal. The moment that babe became real to us, a primal instinct came over, and protecting her was all we cared about. But the fact that our protection could only go so far, as it was in the hands of someone else, was brutal. Zero control. Especially during a global pandemic. I had to trust her. Which of course I did but it wasn’t always easy. J was incredible about communicating, sending pics of her growing belly, and keeping us updated anytime Lou would kick or have hiccups. She texted me every morning from the line she waited in to get a smoothie, claiming Lou just really wanted one! It was difficult to hear from someone else what your daughter was up to or craving. We missed Lou and we didn’t even know her. Further, with COVID protocols, Matt couldn’t come into any of our appointments. He would wait in the parking lot and be on FaceTime or speaker phone. He never saw his daughter on the screen in real-time. Never heard her heartbeat in the doctor’s office. Never got to feel her kick in my belly. And our experience was so vastly different we didn’t always feel included in the mother or intended parent community. Even to this day, I feel isolated.

The time ticked closer to our delivery date. We decided to induce J so we didn’t risk missing the birth. We checked in at 7 am on a sunny day. J, her husband, and Matt and I hung out all day just waiting. It was a beautiful time. Finally, it came time for pushing. I believe that was the single hardest part of the surrogacy experience. I wanted to be the one pushing. Not the one sitting on the sidelines. When J struggled to get Lou out (she was sunny side up that little stinker), I just remember thinking that I should be the one struggling. That I should be the one fighting to get her out. I had zero control in that moment, and I wanted to crawl out of my skin. My daughter was right there, but so far away. Finally, after two hours of hard pushing, Lou was immediately placed in my arms (something that we had to legally agree upon) to start skin-to-skin. Matt and I locked eyes. He put his hands on his head in disbelief. We started sobbing. She was here. She was ours. We made it.

At the beginning of our journey, J had said to me, “You can only say thank you to me when that baby gets placed in your arms.” I looked at her and just kept saying over and over, “Thank you, thank you, thank you.”

Louella was magical. Carbon copy of Matt and all his relatives. It took us all a moment to bond and to get to know each other, I was so worried she wouldn’t be comforted by our voices. But she was. That girl knew she was ours from the first second she came Earthside. She took her bottle immediately. She tinkled all over me. She was so beautiful.

Not a single day with Lou is taken for granted. She turned two in May, and we are astounded by her intelligence, her curiosity, her hilarious one-liners, her curls, her love of drawing and scooting, her bravery, her everything. She’s everything.

The surrogacy journey is like surviving cancer. You are so happy you did but are angry you even had to. Cancer took so much from me, and the ability to carry children is certainly the most painful. But we just stay grounded in our gratitude as much as we can. We are so grateful for J. Grateful for my Cervivor sisters like Ginny who provided support during that time. Grateful for each other. Grateful for our family and friends who kept us going. Grateful for our doctors and medicine. Grateful for Lou, our light at the end of our tunnel.

If you’re in any part of this journey, beginning middle, or end, I’m here. We are all here. We know how hard this is. Feel everything but keep going. You’ll reach your light too.

Kate Weissman was diagnosed with stage II squamous cell carcinoma at the age of 30. She is a 2018 Cervivor School graduate, a Cervivor Ambassador, and a 2023 Cervivor Champion Recipient. Kate also serves as the Massachusetts State Lead Ambassador for the American Cancer Society Cancer Action Network (ACSCAN) where she lobbies to Congress for policies that would improve the lives of cancer patients and their families. She lives in Boston with her husband, their beautiful daughter Louella who was born via surrogacy after her treatment, and their fur baby Giada. She is the SVP of Operations at Weber Shandwick, and loves to read and cook!

My Legacy, My Cervivor Footprint…In my Community

Cervivor is committed to closing the disparity gaps that have plagued communities of color for decades. In an effort to close those gaps, Cervivor invited cervical cancer patients and survivors from around the United States to participate in the Cervical Cancer Patient Advocacy Retreat for Communities of Color in our nation’s capitol, Washington D.C.

Why is this so important to our mission?
Research shows that while the rate of cervical cancer has been declining for decades in the U.S., health disparities persist. Hispanic women have the highest incidence rate of cervical cancer, followed by non-Hispanic Black women. Additionally, Black women are more likely to die from the disease than women of any other race or ethnicity. 

So, what is the consistent theme with these health disparities?
The consistent theme for these health disparities are health literacy and trust within the communities of color. As we navigated these themes, Cervivor ensured that each attendee:

  • Had a safe place to share their struggles, hurdles, and concerns in reference to their community and cervical cancer.
  • Was provided with information concerning cervical cancer, treatments, and screening. 
  • Understood their role as a trustworthy change agent in their community.
  • Embraced the opportunity to learn from various speakers and their fellow survivors about how they could utilize their voices to end cervical cancer in their community.
  • Developed a strategic plan to impact their communities specifically.
  • Made a commitment to assist in closing the cervical cancer disparity gap in their community.

It’s imperative that those impacted by cervical cancer have the knowledge and empowerment to lead the charge in changing the narrative for communities of color. Read the personal testimonies from a few of the attendees and the progress they have made since the retreat below.

Gwendolyn shares her thoughts on what this retreat meant to her:

“The Community of Color Retreat had great impact on my life and I have not been the same since. The moment I arrived at the retreat, I noticed everything was planned with so much love and hope, and personalized for us as a collective but also individually as well. We cried, we laughed, we learned, we inspired each other, we listened, and we gained confidence and much knowledge to not only advocate for ourselves but for others as well – within our families, jobs, and communities.“

Since the retreat, Gwendolyn has been instrumental in planning the National Patient Advocacy Awareness Day event with other Houston Cervivors and in co-leading an upcoming health fair for cervical cancer awareness.

Rosalinda shares her insights:

“For many of us, conversations easily continued into dinner, late evening, and early morning coffee meet-ups! We were clearly vibing and opening up to be vulnerable, witnessing and holding space for each other. Native American, African American, Asian, and Latina cervical cancer survivor’s coming together to listen, share, teach, and support each other was a powerful experience! My heart is filled with gratitude for how effortlessly this all unfolded. My most precious take away? Tamika’s loving challenge that following the retreat we step up and use our talents, abilities, gifts, unique perspectives to Do Something small or big, to end cervical cancer.“

After her retreat experience, Rosalinda has jumped in on National Patient Advocacy Day planning, joined as a Cervivor Español Outreach Committee Member, and continues to set goals for reaching low-income populations to ensure they have access to education, screening, and cancer prevention resources.

Janice gave us her thoughts too:

“Hope – grounds for believing that something good will happen. This retreat provided a breadth of information about studies on cervical cancer, as well as how to raise awareness in our communities. Discussing the health disparities across the nation opened my eyes that more needs to be done and that we need to be able to have open, sometimes uncomfortable dialogue to inform others so that they do not have to go through the same things that we did.”

Following the retreat, Janice has been spreading awareness about HPV and cervical cancer through various tabling events at her local college campus and by helping Cervivor raise funds during an early 2023 Kendra Scott Gives Back event.

Although the retreat has ended, the work does not stop. Each attendee made the commitment as a Cervivor Patient Advocate to assist in closing the cervical cancer disparity gap; by creating a culture of diversity, equity, and inclusion which includes supporting, educating, and motivating their communities that have been affected by cervical cancer.

It’s a great reminder that each day we all have an opportunity to provoke change by elevating our voices. We hold the power to save lives for generations to come. Help us continue to shine a light on these disparities by sharing our content with your networks.

Cervivor, as an organization, authentically embraces diversity, equity, and inclusion across all aspects, ensuring that individuals from various backgrounds feel valued, respected, and represented. The organization recognizes that diversity encompasses a wide range of identities and experiences, including persons with disabilities, religious or ethnic minorities, people of color, native/Indigenous peoples, women, gender identity, and sexual orientation.

Interested in learning more about future Cervical Cancer Patient Advocacy Retreats for Communities of Color? Connect with us at [email protected]!

Finding My Footing After Cervical Cancer

In 2019, my beautiful son was born. I had my first abnormal pap a month after his birth.

A year and a half later, with multiple colposcopies, I was finally told to have a LEEP. A month later, I got a phone call from my gynecologist while at work. It was the phone call that changed my life; I was told that I had adenocarcinoma of the cervix.

I rushed home with tears in my eyes. Not wanting to tell my husband or, for that matter, my mother. She had just started feeling better after her own treatments and a stem cell transplant. Her hair was finally growing back. How can I share this news with her, that I, too, have cancer? My brother was diagnosed with testicular cancer in 2018, my mom was diagnosed with multiple myeloma in 2019, and then a year after her diagnosis, I was told I had cervical cancer. How can this be happening to one family? What did we do wrong?

The very next day, I distinctly remember asking myself, “How did I not know what HPV was? How did I not know there is a vaccine to prevent my cancer?”. I needed to create awareness for my fellow lady friends. We need to be made aware of what our pap tests are looking for. 

Being a new mom is already a challenge. Your whole world has turned upside down for this beautiful little creature who never sleeps, constantly eats, and cries all the time. I was already drowning. I absolutely love my son, but at that moment in time, I felt like I lost a part of who I was. Now, I’m just a mom, not Victoria.

Then a cancer diagnosis slaps you in the face.

My Family

Surviving cervical cancer gives you a whole new perspective on life. My attitude towards living and being a part of my family has changed dramatically.

My son, Jude, is now three years old. Knowing that cancer was in my body and knowing that if I didn’t find it or treat it, he would have been left without a mom; tears up my heart. I cherish every moment I have with him. Yes, even the crazy tantrums and the days I want to pull out my hair!

When my mom had her stem cell transplant, I was one of her caregivers. I saw firsthand what it was like to watch your mom fight for her life. I was fortunate enough to not have to go through radiation or chemotherapy; my son only knew mommy was “ouchie” (after my radical trachelectomy) and to let me heal.

I am here for my family. I am present in all things good and bad.

Being shown that cancer doesn’t discriminate on your age, really made me appreciate life and live it to the fullest. No more saying “well, maybe one day, I’ll do it” – now is the time!

My Friends

Explaining to my friends that I had cervical cancer truly felt like an out-of-body experience.

Like me, they were very uneducated on what HPV was and how it can cause cancer. My goal at the time wasn’t to create awareness, but more to let them know what was discovered and my treatments. My friends are the family I chose, and they needed to know.

Having this conversation and sharing everything with my friends is really what drove my desire to get involved in advocacy.

Creating Awareness

Bringing awareness to cervical cancer has been the biggest part of making my survivorship count.

As I mentioned, I had no idea what they look for during my pap test and just how important that truly is. How science and researchers have discovered a vaccination that can prevent certain HPV cancers.

During this cancer journey, I have found my voice. I need people to hear it, and not just hear it, listen! Educating my friends & family became my priority.

Originally, I shared my story and created awareness through social media. I attended a conference held in Toronto, Ontario, called “Health eMatters”. Here I met other advocates and heard about their journies. I have learned tips/tricks and other resources/tools to engage with more people.

My mom and I have started an Instagram account about a mother and daughter duo fighting cancer together. This is a newly formed platform and I’m excited about the possibilities and the number of people we can reach!

Being a survivor of cervical cancer, I find it is my responsibility to share my story and create awareness of cervical cancer. Don’t ignore the uncomfortable five minutes of a pap test! Get your vaccination!

If I help just one person or encourage just one person to get their pap test, I have done my job as a cervical cancer survivor and advocate.

Ending the Stigma

I, along with a lot of my Cervivor friends, have taken the challenge of stimga head-on.

We all know that cervical cancer has a stigma with it because it is related to HPV. So, it must be a “dirty” cancer. Educating the world about how common HPV is and how most people will have it at one point in their lives. Most immune systems are able to fight it off, while some aren’t so lucky and it can turn into cancer.

I was told I had cervical cancer caused by HPV and I automatically went to the thought of, “How? I’ve been with my husband for over ten years!”. I had no idea HPV could lay dormant for years!

So, back to educating because this is important. Everyone needs to know that just because you have cancer caused by HPV, it does NOT mean you “sleep around” or that you are “dirty”. It only takes one encounter!

We must end this stigma. I am not ashamed of it. I am not embarrassed. I will voice it loud and clear that I had cervical cancer and that you can prevent yourself from getting it.

TOGETHER, LET’S END THE STIGMA around cervical cancer!

Future

Looking towards the future, I would love to be able to connect with other cervical cancer survivors in Canada and truly make a support group here.

I want to be able to help those who have been newly diagnosed and be able to provide them with as much information and support as humanly possible.

I want to share my story with media outlets and really create awareness here in Canada. I’ve been talking with my local MPP about getting the Gardasil vaccination a priority and covered by our OHIP here in Ontario.

There are many steps left in my future of making my survivorship count. I am only two years out from being cleared of cancer and I’m just getting started on my advocacy!

Victoria Falla is born and raised in Hamilton, Ontario, Canada. She is a 33-year-old cervical cancer survivor. She was diagnosed with stage IB2 cervical cancer in 2020. Victoria is an active cervical cancer advocate who will make her survivorship count with every breath she takes.

Our Scars

As cancer survivors and patients, we carry our scars, visible and invisible, with us forever. These scars hold pain and trauma but they are also reminders of how we do heal, how we move through our new world changed but still living our lives out loud.

Whether you wear your scars as badges of honor, gently acknowledge why they are here or chose not to give them the time of day, we commend your choice. You have been through too much to ever feel you need to conform to anything outside of your own comfort.

This post was inspired by community member Christy Chambers and her post, What A Beautiful Mess.

Tiera W – 6 Leeps. 6 biopsies. 1 oophoropexy. 36 rounds of radiation . 5 rounds of chemo. 6 brachytherapies. 3 PET-scan. 10 MRI’s. 2 Bone Scans. 40 Hyperbaric Oxygen Treatments. Left Hydronephrosis. 120+ Pelvic Floor therapy sessions. 1 Bilateral Ureter reimplantation. I’m still here surviving and thriving.

Amanda Z – I’ve learned to accept all my scars as badges of bravery. Some are big and some are small – much like the battles I fought during each of them. But each one is a reminder that I prevail. I can and will win. And I’ll keep winning as long as I can. Yes, sometimes I wish I didn’t have them but beauty goes deeper than my scars and I truly try to remember that every day. With scars and a stoma, it’s important for me to remember my victories and use my scars to pull strength from everyday and live my life!

Tammy B – My Laporotomy scar is beginning to fade, but there’s no hiding it. I also have the scars and a lump in my chest from my port. Those things, along with the 50 pounds I’ve gained from the steroids, and my short newly grown hair regrowing since chemo, I don’t look anything like myself. I’m still learning to accept the new person in the mirror.

Dorrie K – When people ask me if I have any tattoos I tell them that I have FIVE but they can’t see them unless I wear the right bathing suit. I’m proud of my tiny black pinpoint sized radiation tattoos – they are my battle scars and remind me of the warrior I was 25 years ago!

Ana R – After 6 abdominal surgeries my stomach is a road map of scars. I wish that when I looked at them I felt strong for all that I have endured, but instead they are a reminder to me of all my body has been through and they make me sad. It took me a full year before I would let my husband touch my stomach after my third major surgery. I hope someday they will be a source of strength to me, but for now, they are just a reminder of the many things cancer has changed about my life.

Sara J – Leep/Cone 2019. Radical hysterectomy 2022. Chemo/Radiation 2022. Chemo 2023. I wasn’t sure how I felt about my large abdominal incision but after my radical open hysterectomy, it’s just one more step I took to help save my life. It shows strength, beauty, and courage.

Leesa J – My scar is my blessing and my nightmare all wrapped up in one. It’s one single scar that represents both birth and death: the birth of my one and only child and the death of any future pregnancies. A birth that saved my life because had I not gotten pregnant, my cancer would have been very advanced by the time it was found, and a death that took my uterus and my ability to grow another life inside of me ever again. I carry my scar proudly and even though it is a painful reminder of all that was lost, all I have to do is look at my son and see the beauty in it.

Rachel S – I am living the new normal being a survivor. I have scars that are visible. The invisible scar was having a cancer nobody could see.

Thank you so much to our community members who shared their reflections on what it means to survive cervical cancer everyday.

Our bodies have carried us through trauma and to the other side of grief. Invisible scars are just as painful as those that change the landscape of our bodies. Do what you need to do to live and thrive with them and despite them.

In case you need a reminder, you are beautiful. Inside and out. You are a Cervivor, inside and out.

Bringing Community Impact Through Fundraising

Cervivor started as a grassroots organization in 2005 founded by Chief Visionary, Founder, and 22-year cervical cancer survivor, Tamika Felder. A vision that has blossomed with hard work, persistence, and a ton of volunteers to help carry out the mission. 

Now, Cervivor is known as a global community that goes above and beyond to reach those affected by cervical cancer. The organization’s mission is to empower cervical cancer patients and survivors by educating and motivating them to use their voices for creating awareness to end stigma, influence decision and change with the ultimate goal of one day ending cervical cancer.

One reason Cervivor has been so successful in providing programming and support to its community is because of the generous donors and community members who fundraise on behalf of Cervivor. Funding and fundraising are critical components for a nonprofit to effectively operate, expand its reach, measure its impact, and work toward its mission. Without these resources, nonprofits may not be able to provide essential services, respond to emerging needs, and create meaningful change in their communities and beyond. 

Each year, the fundraising committee and community members brainstorm new ideas to have fun, spread awareness, and raise funds for Cervivor and its programming and outreach efforts.

Cocktails & Conversations with One Hope Wine

Outside our typical grants and sponsorships, in 2023 we have fundraised:

Virtual Pap Rally & Run
Jenn’s Birthday Donation Drive

There are so many simple ways you can show your support for Cervivor and every dollar matters! 

We understand that everyone has a different comfort level and depending on your circumstances, not all of these options will make sense but if Cervivor has been meaningful to you, please consider supporting us today by creating your own fundraiser with our 2023 Fundraiser Toolkit. This toolkit covers a wide variety of options for all levels of fundraising.

Sign up to host your own fundraiser for Cervivor or email us with your ideas at [email protected]!

I Get To: A Journey of Resiliency

The lotus flower, in addition to being beautiful, grows in bodies of water from the bottom. Through mud and water, the flower leaves float on the surface in hues of pink or white. The concept of resiliency was not new to me. Though young in age, I have felt I have gone through many challenges. None as hard as the year 2021. 

The year of misery began with my thirtieth birthday. Not only did I turn the dreaded 3-0 but that same day my car broke down. Not a great start to the year. Shortly after that, I began showing bizarre symptoms I couldn’t explain. Becoming concerned as they continued a few months later, I began seeing doctors. And more doctors. And more doctors. Ultimately leading to the diagnosis of stage II cervical cancer in May. 

 It is weird to believe that it was not the worst thing to happen that year. A few weeks after my diagnosis I celebrated my son’s second birthday at my house which lead to the bursting of a pipe in my walls that flooded not only my kitchen but my bathroom as well. This led to the deconstruction of the area to get rid of the mold. I was left with no counters, no flooring, and missing half a wall between the bathroom and kitchen. 

I had never felt stress like that. And I had not even begun treatment yet. I was worried about construction, my treatment, and my son. I started my chemo and radiation in July and a week later my beloved dog, Cookie, passed away due to her own battle with cancer. 

Cookie

To give a short background, Cookie was the dog I got in college and who had been with me for a decade through many challenging mental health battles. After she passed, I got low. I didn’t want to fight. I wanted to end it all. But then I remembered I was a mom to a beautiful toddler who needed me. I could not give up. 

I muddled through treatments with low spirits. The construction finished and my home was put back together. My treatments ended and everything looked ok. But my moods had not improved. 

It wasn’t until I attended a conference with a keynote speaker who hit on the concept of changing the words “I have to” into “I get to”. He used examples of “getting to wash the dishes” and so on. His words struck something inside me. In a follow-up meeting with my team after the talk we went around the table saying things we get to do. Most of my colleagues spoke about getting to do laundry because that means they had clothes and other great things. When it got to me I very quietly said “I get to be with my son because the cancer did not win”. 

Silence filled the room followed by light applause. I wasn’t exactly looking for that type of response but suddenly my mood clicked. I get to continue my life. I get to continue learning and sharing precious moments with my son. I get to give another lonely dog in a shelter a happy life. I get to live! 

And since that conference, every time I feel that I am hitting a wall especially when dealing with doctor follow-ups and tests, I just silently tell myself “I get to do this”. 

Rachel Rump lives in South Bend, Indiana. She is a mother of one and a stage II cervical cancer survivor. New to Cervivor, Rachel hopes to connect with others as well as serve as an advocate in the ongoing battle against cancer. 

Raising Awareness to Build Health Equity

Health equity must be pursued relentlessly in communities of color including the Black community to address long-standing disparities and ensure the well-being of every individual. Achieving health equity includes dismantling systemic barriers, such as discriminatory practices, unequal access to quality healthcare, and socioeconomic inequities that disproportionately impact Black individuals.

Here are a few holidays and awareness campaigns to share with your networks during the month of June:

Juneteenth
Also known as Freedom Day or Emancipation Day, is an annual celebration observed on June 19th to commemorate the emancipation of enslaved African Americans in the United States. Originating in Galveston, Texas, in 1865, Juneteenth marks the day when Union General Gordon Granger arrived with the news of freedom, proclaiming the end of slavery in Texas, two years after the Emancipation Proclamation was signed. It has since become a significant cultural and historical milestone, symbolizing the triumph of freedom over oppression and serving as a reminder of the ongoing pursuit of equality and justice for all.

Caribbean American Heritage Month
Celebrated annually in June, is a time dedicated to recognizing and celebrating the rich contributions and vibrant cultures of Caribbean Americans in the United States. In conjunction with this important observance, it is crucial to shed light on significant health issues that affect the Caribbean American community, such as cervical cancer. Cervical cancer is a leading cause of cancer-related deaths among women in the Caribbean and Caribbean American populations. During this month, we’re raising awareness about the importance of regular screenings, early detection, and prevention strategies to combat cervical cancer and promote women’s health in the Caribbean American community. We can empower individuals to take proactive steps toward a healthier future.

National Black Family Cancer Awareness Week
An important week-long observance that aims to shed light on the disproportionate impact of cancer on the Black community and raise awareness about prevention, early detection, and treatment options. By addressing disparities in healthcare access and providing support networks, this initiative plays a crucial role in fostering resilience, advocating for equitable care, and ultimately working towards eliminating cancer-related disparities among Black families.

By implementing culturally sensitive care, increasing healthcare access and affordability, and prioritizing community empowerment including sharing personal stories, we can foster a future where every person in the community enjoys equitable opportunities for their best health and is free from the burden of historical injustices.

Are you a cervical cancer patient or survivor?
Add your story to our Cervivor Stories and help spread awareness of cervical cancer! Your story has the power to create change and it matters.

Embracing Inclusivity

It’s officially Pride Month so let’s talk about it, embracing inclusivity. 

Language has the ability to shape our perceptions, build understanding, and foster a world where everyone feels seen, respected, and celebrated. By using inclusive terms and adopting inclusive language, we can create an environment where people of all gender identities and sexual orientations can express themselves authentically without fear of judgment. 

Remember, words like “cisgender,” “non-binary,” “genderqueer,” “pansexual,” and “asexual” hold immense significance by validating and honoring the diverse experiences and identities within the LGBTQIA+ spectrum. Let’s educate ourselves and others, not just on pronouns but on the beautiful tapestry of identities that exist. By doing so, we pave the way for a world that embraces and celebrates the full spectrum of human diversity. 

Cancer disparities within the LGBTQIA+ community are a pressing concern that demands attention. Multiple factors contribute to these disparities, including social determinants of health, limited access to healthcare services, and unique behavioral risk factors. LGBTQIA+ individuals often face discrimination and stigma, which can lead to higher rates of tobacco and alcohol use, as well as mental health challenges. 

Additionally, inadequate healthcare coverage and cultural insensitivity can create barriers to early detection, prevention, and timely treatment. Addressing cancer disparities in the LGBTQIA+ community requires comprehensive efforts, including targeted outreach, education, and policy changes to ensure equitable access to healthcare services and reduce the burden of cancer in this marginalized population.

Cervical cancer poses a significant health concern for individuals within the LGBTQIA+ community, highlighting the importance of inclusive and comprehensive healthcare practices to address the unique needs and experiences of all individuals, regardless of their sexual orientation or gender identity. 

We encourage and support individuals who identify as LGBTQIA+ to share their stories. Each personal narrative has the power to create empathy, break down stereotypes, and change the future to reflect the change we want to see. 

 We are Cervivor and we want you to know that you are never alone. Your story matters!

Cervivor Celebrates Survivorship

During this National Cancer Survivors Month, Cervivor celebrates each and every one of you who has been impacted by a cancer diagnosis. This month, we come together as a community to celebrate your resilience, strength, and unwavering spirit despite the obstacles and challenges you’ve faced and may still be facing.

As cancer survivors, our journeys have been marked by countless moments of fear, uncertainty, and pain – one that has tested your physical, emotional, and mental limits. It’s no surprise that we rely on hope, determination, and community to uplift, support, and empower us all to continue our day-to-day lives. This community reminds us that there is always light even in the darkest of times.

Let this month be a reminder that cancer does not define you. It is a part of your story, but it does not diminish your worth or limit your potential because…

  • Your stories both individually and as a collective, have ignited hope in the hearts of others facing their diagnosis and treatment of cancer, and your unwavering optimism has shown us that the human spirit is indomitable.
  • This community has shown us what it means to truly live – to cherish every waking moment, to find joy in the simplest of things, and to appreciate the beauty of life.
  • Your resilience has taught others to value their health, relationships, and the precious moments we often take for granted.
  • We also recognize the impact each of you has on the future of cancer care, research, policy, treatments, health equity, and so much more.
  • You have become a community of support, advocates, caregivers, and beacons of hope for those who are still fighting.

Let us continue to raise awareness, and promote early detection and vaccination to prevent cervical cancer and other HPV-related cancers. Keep shining your light, continue to inspire others, and know that you are never alone in this journey.

Happy National Cancer Survivors Month!

Are you sharing your story?

If you haven’t yet, add your story to our Cervivor Stories. Write a blog post about your experience, your advocacy, a milestone, or simply a memory or reflection, and send it to [email protected]. We can publish it, add it to the patient voice, and reach of our Cervivor blog.

How We Went from Pudding to Acceptance

Two years ago, my husband and I received the devastating news that I had been diagnosed with cervical cancer. At the time, the mere mention of the word “cancer” was enough to send us into a state of panic. To cope with the fear and uncertainty, we came up with a unique way of talking about my diagnosis: we referred to it as “a pudding.”

This simple act of renaming the disease allowed us to talk about it more openly, without being overwhelmed by fear. We could discuss my treatments, prognosis, and how we were feeling without feeling like the weight of the world was on our shoulders. I used this little cute pudding emoji when I texted someone about it, and encouraged some of my close friends to do the same. 

As the months went by, we faced numerous challenges and struggles, from painful treatments to emotional turmoil. But with the support of family, friends, and a dedicated medical team, we slowly but surely found the strength to keep fighting. Over time, our outlook on life changed as we learned to embrace each day and live in the moment.

Fast-forward two years, one of my friends texted me saying “how is your pudding?”, and this was when I realized that the word “pudding” is no longer a part of our vocabulary; we can now say “cancer” without fear or hesitation. My husband didn’t even remember the fact that we used to call it a pudding. This represents a major shift in our mindset and how we perceive the disease. We have learned to accept the reality of my diagnosis and move forward with it. We have come to understand that cancer is just a word, and it does not define who we are or what our future holds, although I also feel like cancer is now a big part of my life in both good and bad ways.

This journey has been incredibly difficult, but it has also taught us so much about ourselves and life. We have learned that it’s okay to be afraid, and it’s also important to face our fears and embrace the journey. By being open and honest about our experiences, we hope to inspire others who may be going through a similar situation and help them overcome their fears and pains.

In conclusion, our journey from “pudding” to acceptance has been a powerful reminder that we are strong, bonded and we get through difficulties together. By embracing the reality of my diagnosis and focusing on one thing at a time, we have found the strength and resilience to overcome the difficult situation and move forward with hope. I am currently facing issues with my body due to side effects from cancer treatments, and those sometimes make me feel like I am mentally not well, but one thing we know is I will feel better again. We will get through this. I am now much more confident and have more faith in myself.

Survivor & Caregiver

Looking back over the past two years, time and patience were the most important things in this process of moving forward. In my darkest moments, I turned to a support group of fellow cancer survivors, Cervivor, who provided me with comfort, encouragement, and a sense of community. I am amazed by the resilience of these individuals, who have gone through similar experiences and come out on the other side. Their stories gave us the courage to keep moving forward, even on our toughest days. This is why I am writing this blog post, hoping to give a ray of hope for anyone who is currently suffering. I will continue to tell my story as a way to inspire others and to remind you that you are not alone. 

Anna was born and raised in Japan and came to the U.S. in 2015. After she survived cervical cancer in 2021, she became a Cervivor School graduate in 2022. She is a business development professional working for a Japanese corporation. She currently lives in Washington state with her husband and their fur babies. In her spare time, she enjoys gardening, cooking and watching shows & movies. She is passionate about fostering dogs to give them a second chance.

Teal Blue Japan: An Interview with Michiyo Namba

May is Asian American Pacific Islander Month! As we continue to celebrate, check out this interview between Cervivor Ambassador and Cervivor Japan Liaison, Anna Ogo, and Ms. Michiyo Namba from Japan. Anna met Michiyo through Tamika Felder, Founder & Chief Visionary of Cervivor during Cervivor School Nashville. In this article, Michiyo shares her story with cervical cancer and the challenges the Japanese community face with this disease. 

Anna: Can you start by telling us a little more about yourself?

Michiyo: My name is Michiyo Namba, President of Think Pearl. I started my own PR and event casting company for women when I was 29 years old, got married at 31, and had a baby at 33. In 2009, I was diagnosed with cervical cancer at 36 years old. I wish I had known more about cervical cancer, vaccines, and screening before I got cancer; and this was my reason I started an organization called Think Pearl. That was right before my hysterectomy surgery in December of the same year, 14 years ago. Our mission is to make everyone healthier and happier both physically and mentally, through our education and advocacy on cancer prevention and women’s health including cervical cancer awareness.

Anna: Tell me about your cancer journey in Japan. How does your story begin? How did you feel about your diagnosis?

Michiyo: In the summer of 2009, I had a routine pap test, which came out abnormal. I had no symptoms at that time. In January 2010, I underwent a radical hysterectomy, and it was confirmed that I had stage 1A1 cervical cancer. I had the option of preserving my uterus, but I chose to have a hysterectomy because of the size of my tumor. I immediately thought “Cancer = death” as I didn’t have any knowledge about it. I asked a friend of mine, who was a gynecologist, for explanations about my diagnosis, which helped to sort out my feelings. As I researched cervical cancer more, I learned that this disease was not uncommon, and it didn’t make sense to me that  I had never heard of this disease before.

Anna: How did you share the news with your family and friends? What was their response and what kind of support did you have?

Michiyo: I informed my family and friends after I had come to terms with the situation. It was reassuring to hear that they would support me no matter what happened during treatment, as long as my life was not in danger. The doctor had told me that I could continue with my usual routine until the surgery, which made me feel conflicted. However, my family and friends were there for me as usual, and their constant presence made it easier for me to share my troubles without feeling like a burden.

Anna: Can you share with us about your treatment? What were the most difficult things? How are you doing now? Has your life changed after treatment?

Michiyo: I underwent a radical hysterectomy and was hospitalized for three weeks (which is longer than the current average for this procedure at the time of my surgery in 2009). I did not undergo any other treatments, such as chemotherapy or radiation. Realizing that people can die young and unexpectedly and that the risk of death can be so close, was the most difficult and challenging aspect for me. It has been about 14 years since my surgery, and I am in remission. There were not many physical changes in my daily life. However, my perspective on life has changed as I feel like I have been given a second chance, and I want to contribute to society in any way I can.

Anna: Let’s talk about the Teal Blue Japan project. What was your inspiration for the project?

Michiyo: In 2020, the World Health Organization (WHO) announced a global strategy to eliminate cervical cancer and an event was held on November 17 each year to light up landmarks around the world in the teal blue color associated with cervical cancer elimination efforts. The event was organized by WHO, and it was first held in Kyoto in 2020. In 2021, the Teal Blue Japan campaign was launched nationwide to promote cervical cancer screening and to improve understanding of the proper knowledge about the HPV vaccine in cooperation with local communities. The campaign is hosted by Think Pearl, but doctors and physicians across Japan are actively working on educating and raising awareness in their respective communities. The success of the campaign is due to the support and contributions of like-minded individuals who believe that doing good for society is important, rather than just the know-how of organizing campaigns, which is the core business of Think Pearl.

Teal Blue Tokyo
Teal Blue Osaka

Anna: What challenges do you see regarding cervical cancer in Japan? What would you like to see for the future of cervical cancer in Japan?

Michiyo: In order to make impactful communication, I believe that all stakeholders, including the government, education, healthcare, and media, need to work together. While each is working to improve the situation in their own position, it seems that information has not yet reached people all over Japan. Everyone has knowledge about cervical cancer and its risks, and everyone is properly informed about the choice of getting vaccinated against HPV.

Anna: Looking back at your cancer journey, what are some of the cultural obstacles you had to overcome? What advice do you have for other women diagnosed with cancer in Japan?

Michiyo: Since the primary cause of cervical cancer is the HPV infection and that is related to sex, I think that stigma towards sex are similarly present in many cultures and maybe cannot be erased. However, in Japan, we have various projects in progress to promote cervical cancer prevention, early detection, and so on, and to implement those systems into society and educational systems. I believe that if we continue to progress in this direction, we can definitely overcome these barriers. In Japan, there are many fellow cancer survivors around you, even if you don’t know it. I think there may be times during treatment when it is very difficult and you feel hopeless. However, I hope you won’t hesitate to rely on those around you and ask for help. Japan has some of the world’s best treatment options available. Trust in reliable medical professionals, take your time and try to find happiness in even the smallest things every day.

Cervivor would like to extend our deepest gratitude to Michiyo for sharing her cervical cancer journey from patient to advocate with us and to Anna for her dedication to bringing more awareness globally to cervical cancer awareness and prevention.

The Language of Cancer

Cancer gives us a new vocabulary. Some words and phrases we embrace and some just do not resonate with us. We asked our Cervivor community to share a word or phrase that they find or found challenging to hear during and after cervical cancer treatment.

Just saying or writing the word ‘cancer’ hurts so much. ~ Marlene B

There was a resounding, collective group sigh at the phrase “new normal”. Nothing about cancer is normal and the ability to go back or to regain any sense of BC (before cancer) normalcy is completely unattainable. Treatment may end, surgery is done but we live with life-long physical and emotional side effects that you just do not ‘get over’. As Anne Z says, “Cancer is something I just have to deal with”.

“You don’t look sick”

This hosts a multitude of triggers for those living with both acute and chronic illness. It’s taken me years to learn how to unpack (to recognize why I react) and respond authentically to this one… yet can still really hurt emotionally. To everyone here, you are seen… even if the illness or situation is not. ~ Lori S

“You look good”

Although I know it comes from a good place, I hate when people say ‘you look good’ knowing I don’t look anything like I did before my third diagnosis. I am not sure why it bothers me so much but I always smile and say ‘thanks’. I also cannot stand when people say, ‘I don’t know how you do it’… like what was I suppose to do, give up? I wish they could just simply say, ‘I admire your strength’. ~ Jenn M

“You got this”

I think I prefer the statement, ‘I’ve got you’ as it comes across as more supportive. ~ Hilary B

“Preventable”

This word really stings for me. This is truly just my hang up because of my situation but I completely understand and agree with why it’s used now. For me though, it gives me chills because it makes me feel like if I would’ve done something different I wouldn’t have cancer. It just stings because the HPV vaccine wasn’t an option for me (I’m too old) and I have had my screenings religiously every three years since I was 18. ~ Tammy S

“Only”

Like, it’s ‘only surgery’ or it’s ‘only stage __’. It can come from anyone but it especially stings when it comes from fellow Cervivors. This cancer is life changing, brutal and leaves us with awful after effects no matter the stage or treatments. It makes you feel like you’re viewed as a lesser cancer patient. ~ Elizabeth A

“Incurable”

I have put zero stock in this word since I first heard it. Fact is I’m living with cancer not dying from it and I have a lot of living left to do. ~ Christy C

“They lost their battle” or “They beat cancer”

I don’t think it’s a competition and no one wins or loses. I chose to say ‘I’m surviving cancer.’ ~ Carol L

I hate thinking about people losing… ~ Jessica S

When someone says this, it always makes me cringe. ~ Brooke W

“Move on”

Don’t you think I know that already? It’s a process that takes time to heal both physically and mentally. ~ Anna O

People who have maybe not gone through or cared for a loved one with cancer, often have well-intended but somewhat off-putting comments that many of us struggle to accept. We smile, accepting these ill-fitting words, as we know they come from a place of kindness and concern, but we hope that others can be more mindful when speaking to cancer patients and survivors. Or perhaps chose to say nothing and simply offer your hand to hold — this speaks volumes.

What Our Mothers Gave Us

I am a daughter of women. And in my little world, it was my grandmothers and my great-aunts, along with my mom, who shaped my early years with their unconditional love, kindness and most of all their joy. They were a consistent presence in my young life when nothing else was. As I grew up, and especially when I found myself in the cervical cancer world, their words became the armor I wore to take on whatever the world tossed my way.

This Mother’s Day, we want to celebrate how we have been transformed by the women in our lives. Our mothers, grandmothers, aunties — these are women who made a lasting impact on who we have become. Our community members reflected on what their family matriarchs bestowed upon them and how that guides you today. You shared your heartfelt memories and they really spoke to how diverse the celebration of Mother’s Day can be.

Doris

“My dear mother passed away in August 2020, just five months after her 100th birthday. Her spirit has kept me going throughout the cancer journey. I can imagine if she were here, watching me through this past year, she would encourage me with expressions of faith and determination. As she frequently pointed out when I was growing up, ‘You are a child of God and, if He marks the fall of even one sparrow, how could He not keep up with you?’ She modeled how to thrive through troubles, with head unbowed, hear unbroken and soul unbothered. I am made better for it.”

Anne

“At the end of my grandma’s life, she was suffering from macular degeneration, Parkinson’s disease and Lewy body dementia. We knew she was about to pass so I went to visit her to say goodbye. When I walked in and held her hand, she said, ‘Annie’. She hadn’t spoken in weeks! I told her how much I loved her, how much I knew she loved me and that she had always been my champion. I’ve been thinking of her a lot lately. I’m trying to raise my girls to be strong, kind, intelligent women. May we all have strong women in our lives, championing and cheering us on.”

Kimberly

“After my father passed away when I was 11, I was left with frustration and also confused. I was a ‘Daddy’s girl’ and I was hurt. My mother stepped in and nurtured the pain that I carried and allowed me to become a strong, resilient fighter. When I became a mom, I wanted to share those same strengths with my children. And my children have taught me to hope, dream and love. They have taught me more than I believe I’ve taught them at times. Their blind faith reminds me that I can love even when I’m hurt, mistakes do not have to be your defining moments, and your next levels are created by your desire to see your end result.”

Tamika

My best piece of advice from my mother reflects my own parenting style: “Happy, Healthy, Alive”. My mother often commented how happy I was, and shared that she prayed that I would always be so happy in life. I want Chayton, our Cervivor Baby, to know that he is loved. I grew up in a huge family, but also had a lot of close family friends that were a part of my village, and I love that my son has that too. There is so much pressure in life to cross all of the “successful” things off a list. But we often forget the pure joy of living a well-lived life.

Let’s take a moment to remember and thank our loved ones for bestowing unwavering love, guidance and wisdom upon us. We treasure our memories of these women who gave us grace and strength. Perhaps we are missing our special person today but we can keep them in our hearts forever, and carry their light within us as we move through life. We also have the compassion and kindness of this resilient Cervivor community that we can turn to when we need to be uplifted.

Carol Lacey is our Lead Cervivor Ambassador and 2020 Cervivor Champion. She wants to thank her mother, Margie, for loving her fiercely. Read or watch Carol’s Cervivor Story.

My Story as a Traditional Asian Daughter

Both my parents immigrated from Thailand at a young age; met, fell in love, and had me. My grandmother and aunt moved from Thailand to Southern California, a completely foreign land, to help raise me while my parents strived to obtain their American Dream. Even though I was an American kid who listened to News Kids on the Block on the radio, I was still a traditional Asian daughter removing my shoes before entering my home and eating delicious home-cooked Chinese meals. Not only was I physically raised in the Asian culture, but I also absorbed all the traditional Asian characteristics as well.

I was taught to follow strict directions, strive for perfection, and above all conceal my emotions. When you are fortunate enough to be born with the “crying mole”, a beauty mark beneath my right eye, you are taught always to withhold your emotions and tears.  No matter how large the cut, or how much disappointment I felt for failing a test I was taught not to display any emotion. I know this might sound like a harsh way to raise a child, but crying and showing emotion was a sign of weakness in my family. My family wanted me to grow up to be a strong, independent woman while honoring my heritage and culture. 

My strength was first tested when I was diagnosed with HPV at 18. I was a confused hormonal teenager and couldn’t comprehend what was happening. My world was turned upside down and the worse part was I was alone. I couldn’t tell my parents for fear that I would disappoint them. I couldn’t call my friends because I didn’t know what to say. I sat in my truck alone, with the phone in my hand, listening to the dial tone and suddenly tears came gushing out. But somehow, the memory of when I fell off my bike and the sound of my aunt’s voice telling me, “You can choose to sit here and cry or you can clean yourself off and do something about it.” I chose to do something. I quickly started to research HPV at the university library. I needed to understand what was IN me, how did I get it and what could I do about it. I was shocked to learn what my doctor told me was a “minor instance” of HPV could be linked to cervical cancer. I immediately called my doctor and started the process of advocating for myself. I called and called until I got a second opinion from another OBGYN who confirmed that I had cervical dysplasia (CIN III). 

Life seemed to continue for me. I fell in love, graduated with a degree in English Literature, and got in engaged. A few weeks before walking down the aisle I received a call from my OBGYN that tested my strength yet again. My stubborn HPV decided to come back to life and I was diagnosed with 1A1 cervical cancer. In her calming voice, she said “You’re going to be ok. You did everything right, and we caught this very early.” I cried and through my tears explained that I was getting married in a few weeks. I remember the long pause in her voice as she took a deep breath and said “This is not going to take away your happiness, you go walk down that aisle and get married. Go on your honeymoon, and when you get back, we’re going to take care of you. Don’t let this stop you from living your life.” I got off the phone and cried as my fiancé held me until I fell asleep. I followed my doctor’s orders, hid the pain and fears, and got married on August 19th, 2006. And she was right, it was one of the happiest days of my life. 

I truly thought that I overcame the biggest obstacle in my life, surviving cancer, but I was wrong. My husband and I tried for years to have a child. We suffered miscarriages after miscarriages and failed infertility treatments. It was painful every time we got a pregnancy announcement from friends and family. I remember hiding my pain as I congratulated all my friends when I held their newborn children. I wanted a family of my own, but because of the various surgical procedures due to the HPV and cervical cancer, it was difficult. Finally, after years of trying we found out that we were pregnant. I was overjoyed! I knew from the start that even though I got pregnant carrying my baby to full-term was the ultimate battle.

At the start of the second trimester, my cervix (which was nearly gone) was “shrinking” and I was rushed into surgery to insert a cerclage to help keep my cervix closed. I was terrified. I could lose the baby I had wanted for so long. After the surgery, I was placed on modified bed rest, which consisted of coming downstairs once a day, only getting up to go to the bathroom and get food, but mainly off my feet. I told the doctor I would do whatever it took to keep my baby safe. I was hopeful that by restricting my movement for the second trimester I would be rewarded with the freedom in the third trimester.

Unfortunately, that was not the case. At the start of the third trimester, I was placed on full bed rest, only allowed to get up to go to the bathroom and shower once a day, and back to laying down on the bed. For two months I laid on my bed, holding back all the emotions I was feeling, in fear that I would lose the only strength I had left to keep my daughter safe. Finally, at the 30th week, the doctors felt that it was safe to remove the cerclage and release me from bed rest. I was FREE! I could finally see and feel my toes, I could feel the sunlight on my face and see the world again. But the best news, my daughter was safe. My daughter, Samantha Reagan Paguio was born on January 15th, 2013 in style, three days after her due date. 

I know my upbringing to some, might seem cold, restrictive, and harsh, but I am thankful for the matriarchs in my family: my mom, my Ama (grandmother), and my aunt. Their wisdom and traditional ways taught me how to harness my strength when I desperately needed it. Without them and their lessons, I would not be who I am today: a book editor, a mom, a friend, a wife, a daughter, and a Cervivor.

Joslyn Paguio graduated from the University of California, Riverside with a BA in Literature. She is currently a Senior Acquisitions Editor at Elsevier, overseeing the Neuroscience and Psychology book list. Since being diagnosed at 18 with HPV and then cervical cancer, with multiple recurrences, she has dedicated herself to educating others and advocating for the HPV vaccine. She is currently hosting a monthly podcast for Cervivor, interviewing cervical cancer patients and survivors, and addressing issues they face. During her spare time, she enjoys reading, cooking, and traveling with her family.

Infertility Awareness Week

One cervical cancer survivor sat down with Cervivor to share her story, how she navigated infertility, and what that looked like for her journey.

Can you tell us a little bit about your age and what your diagnosis was?

I was diagnosed with clear-cell cervical cancer when I was 24. This was ten years after being diagnosed with an unrelated childhood cancer, Hodgkins Lymphoma. You think you get hit once and it won’t happen again, but boy was I wrong. My oncologist said that the cervical cancer diagnosis was so rare, they were unsure of how I got it. 

What did treatment look like for you?

I was given a couple of options for treatment. I had just gotten engaged several weeks earlier, so that definitely influenced my decision for treatment. 

My first option was to get a hysterectomy, totally remove my uterus, but leave my ovaries to preserve my fertility and hormone function. This was the option most of my doctors recommended to treat this type of aggressive cancer. They said I would possibly need radiation after depending on what they found when they went in. 

The second option was to go through chemotherapy and possibly radiation to shrink the tumor, and then have a surgical intervention, a trachelectomy, to remove my cervix and the tumor. The doctors said that during this surgery if cancer margins were not met, I may have to get a hysterectomy. They also were unsure if the chemo would even work since this cancer was rare and aggressive. 

I ended up choosing the first option and I underwent a vertical (open, not laparoscopic) hysterectomy, and they moved my ovaries up, out of the field of radiation to preserve my fertility. Prior to this surgery, the doctors allowed me to delay a couple of months so that I could go through an egg retrieval and freeze my eggs. 

How did you learn that you were going to be faced with infertility?

Upon diagnosis, it was pretty clear that I would have some sort of infertility, either no uterus, or no cervix depending on the treatment option I went forward with.

I will say, that after processing and going through all this, I (or we as a couple) knew going into family planning that we would have challenges and would either have to adopt or use a surrogate. 1 in 4 couples go through infertility and they have working ‘parts’. I always said that at least we kind of knew going in vs. trying for a year or more and then having to seek out help from fertility doctors. We knew and were able to prepare ourselves for this process. 

What did you do to help yourself through those emotions?

My fiancé and my family were really my emotional soundboards at the time. I did a lot of crying. I tried to get out of the house and just ‘forget’ for a little bit. At the time I was working in healthcare with women going through high-risk pregnancies, and that was really hard to be around. I had some time off of work, which definitely helped clear my head. The hikes, walks, friends, and family really kept me going. 

Is there anything you would want anyone else facing these emotions to know?

You are not alone. It sounds cliche, but you are not. I actually recently spoke to a young single woman who has to have a hysterectomy for medical reasons too and we shared our stories and our journeys and it was just nice to connect with someone who understands exactly what you are dealing with. 

Reach out to local organizations, or even your doctor as they may know other patients who are open and willing to share and connect!

I will also say, to ask your doctor about the pros and consequences of any treatment or decisions you make. I froze my eggs soon before surgery, to be able to use them later on. Nobody encouraged us to freeze embryos instead, which have a much higher rate of survival after thaw. The focus then was on the cancer and it was very rushed. That is a whole other story too, but had all that been transparent, our course of action, and chances of starting our family earlier/differently, would have been altered. When I spoke to my doctor about this after the fact, she made a point that she as an oncologist was acting to save my life and treat the cancer, they didn’t think about the after and the long-term issues or effects on my fertility.

Can you share where you’re at in your journey now?

Thank God I have been cancer free for over four years. I have since gotten married, and we are so blessed to have welcomed our first child into the world via an amazing surrogate. This was not an easy process, but we are so grateful to her and her family for putting their lives on hold so we could start our family. There were so many bumps and decisions along the way; picking an agency to work with or to go ‘independent’ and find our own surrogate, matching with her, all the legalities that we had to go through, emotions, failed treatments, rude comments, time waiting, and the stress and emotional toll of not carrying my own child. I could talk for hours about that all, but with the grace of God, we did it! When they say it takes a village to raise a child, I would say it also does to bring one into this world.

Read more Cervivor stories like this one on our website here. Are you a cervical cancer patient or survivor? Share your story with us today!

This Too Shall Pass

This week is observed as National Minority Cancer Awareness Week and we’ll be highlighting Cervivor community members that identify within this population. Cervical cancer survivor and patient advocate, Tiera Wade shares the inspiration behind her journey with her small business.

“Traditionally, waist beads have been worn in West African culture for various reasons. Some of those reasons are adornment, accountability, spirituality, and honoring the power our wombs hold.

My reasons started to be intentional with expanding my family in hopes of having another child. As a small business owner, I started to incorporate this intentional art of making waist beads into my business. In that process, I connected with other women looking for healing, grounding, mindfulness, and acceptance.

When I found out I had cervical cancer all of the love, time, and intent, I soon felt betrayed. This womb that I was honoring and loving was now trying to kill me. I cut off every single one of those 28 strands and prepared for treatment.

Shortly after starting treatment, I received a package in the mail, and this package contained a strand from another maker across the country. My waist bead sister sent a note with her handmade strand, “This too shall pass.”

A few days later, I would receive another one and another. This continued throughout my treatments. When I was declared NED (no evidence of disease). I took those waist beads that were created in and with love and tied them on my waist. Each strand as gentle reminders that I’m loved and thanking my womb for a job well done, and she could rest.

Today, as a survivor, I use waist beads now to educate others. I share my why and Cervivors message. Telling them to prioritize themselves, love their bodies in the journey, and their health.”

Tiera Wade is a cervical cancer survivor and thriver turned patient advocate. She resides in the great state of Ohio and she is a small business owner and artisan designer of Set Trendz where she encourages others to be bold and be different.

22 Years and Counting

Today, we’re raising a toast to our Founder and Chief Visionary, Tamika Felder. It’s been 22 years since Tamika Felder heard those devastating words, “You have cervical cancer.”

It was a moment that changed her life forever. Tamika was 25 years old and budding in her fast-paced career as a Washington D.C. news producer. She wasn’t expecting a slowdown, more importantly, a cancer diagnosis.

Tamika endured a hysterectomy followed by chemotherapy and radiation that ultimately stripped her of her fertility. After experiencing frustration, pain, and grief, she spent countless hours researching the human papillomavirus (HPV). What she found was how common the virus was and that there was a necessity for others to talk about it. She sought others who have walked the same journey but what she found was the shame, stigma, and isolation that cervical cancer brought with it. Tamika wanted to change the narrative and empower others to tell their stories so created what she didn’t have.

In 2005, Tamika and Friends, Inc., a nonprofit dedicated to cervical cancer survivors and their friends and family was born. Support became an all-encompassing demand and she found the more she told her story, the more it reached other women. Several house parties were hosted to have real-time conversations about cervical health, cervical cancer, and how to protect yourself. Eventually, that idea became an official program of the organization we now know as Cervivor, Inc.

Tamika understood there was a calling of living her life beyond a cervical cancer diagnosis and over the years, she has continued to transform the lives of each person impacted by a cervical cancer diagnosis. She not only empowers them to use their voice, but she teaches them that their pain can have a purpose and that they have the power to create real change.

Tamika has been a visionary and a trailblazer not only in the cervical cancer space but to open up the dialogue to talk about women’s health, sexual health, health disparities, and what it means to strive for better access to and care for all – and now, the path to parenthood for those facing infertility.

We are in awe of everything she has endured, built, and nurtured, and can’t wait to see what else blossoms in her lifetime. We couldn’t be more grateful for her resilience and leadership to create the community we now know as Cervivor. Thank you, Tamika!

Join us in celebrating Tamika today by scheduling your routine cancer screenings and vaccination appointments, sharing this blog and her story with your networks, and by donating $22 to Cervivor!

Chapter 2: Growing, Learning, and Thriving Through Cervivor

It seems so surreal to be celebrating another work anniversary with Cervivor. Another year of incredible awareness initiatives, advocacy, education, and outreach plus community support for cervical cancer and HPV-related cancer patients, survivors, and thrivers. If you’re new here, please take a moment and read my introductory blog “Hi, I’m Morgan!” and my “One Year At Cervivor Taught Me” reflection post to bring you up to speed.

I started my cancer journey at 24 years old at a time when I was just getting my footing in my adult life, in my career as a dental assistant, and setting myself up for a bright future ahead. But life has a funny way of placing a wrench right in the middle of those plans we all carefully curate. I wouldn’t face just one cervical cancer diagnosis, but I would be thrown into the arena once again to face a metastatic recurrence in my lungs. I spent the greater part of two years just trying to survive. It was a grave reminder of how truly precious our time is here.   

I’m now standing 8 years out from that initial diagnosis with 7 of them being declared with no evidence of disease. I’ve been reflecting on everything I’ve been through and what I’ve been able to accomplish since then: the end of treatment, starting a Bachelor’s program just two weeks after completing chemotherapy; volunteering as a Cervivor Ambassador and patient advocate for so many organizations in my home state and beyond; all the way to getting my own apartment again, graduating with a Master’s degree, and landing a position with the organization that strengthened my voice.   

Over the course of the last two years, I’ve been learning and defining my role as the Community Engagement Liaison, as a nonprofit professional, and as a patient advocate. It has been a whirlwind of emotions supporting our community, from celebration to the unexpected and inevitable hits – you know, the bad follow-up scans, unexpected treatment side effects, recurrences, and unbearable losses. Cervical cancer is not an easy cancer. There are all of these additional layers of trauma thrown into the mix and it can be hard to articulate everything to those who haven’t set foot in our shoes. But we try. It’s not until we’ve met someone who has been through it and can say, “I have been there,” and “You’ve got this!” that you truly feel heard, accepted, and safe. I know because it happened that way for me too. 

Through it all, we continue to support each other as a community and our mission continues to drive the work we do every single day. Part of that is making sure that no other patient or survivor feels alone like so many of us have. I am reminded of the day I was diagnosed with cervical cancer every time a new request comes into our Comfort Care & Compassion program. I replay what I felt and I put that energy into the love, support, and personalization of that package. 

I am also reminded of my own diagnosis when another woman posts in our private group to share that her cancer is back. It can be heavy to see that over and over again but it only drives my purpose as a community support even further. It empowers me to be brave for others and do important work by reaching out to those who provide care for our community members. In doing so, I’ve been able to build and nurture partnerships like the one with the University of Alabama Birmingham (UAB) and Dr. Christina Wilson. Together we came up with a sexual health and support bag for those going through internal radiation – a little privacy bag for dilators and a business card linking to our support resources here at Cervivor. To hear the feedback from real patients has been truly empowering that we’re doing something meaningful and impactful through this partnership.     

Every time a woman has her ‘ah-ha’ moment through one of our various programming events, it catapults me back to the moment I set foot into a Cervivor School for the very first time. Standing up and speaking at a Cervical Cancer Summit, Cervivor School, or HPV Survivors School, I am in shock and awe that I was in the attendees’ seats only a handful of years ago. It keeps me feeling humble but it’s a great reminder because we are often told just how important our stories are. There is so much truth in that statement because the sharing of our personal stories continues to grow in our outreach across the globe.

2023 is an opportunity to keep learning, growing, and experiencing new things as an individual, community, and organization. One of my favorite parts of this job is getting to know others and their stories – no matter where they’re at in life. To see the uplifting support firsthand from our community members and just how one little “You’ve got this” message isn’t so little at all. Those are the things that drive this community to be who we are today. We are Cervivor. 

I cannot wait to see the expansion of Cervivor, Inc.’s mission even more. It is simple yet impactful and effective: We share our stories to create the change we want to see in this world and in this lifetime. We want to see those who are impacted by cervical cancer to feel empowered and supported because no one should have to ever walk this journey alone.

I know I want cervical cancer to be a thing of the past for our upcoming generations and I believe we can do this. I love to get to know others and the work they are doing in the cervical cancer and HPV-related cancer space! Connect with me on LinkedIn or send Team Cervivor an email at [email protected].

Morgan Newman, MSW, Outside of her Community Engagement Liaison position at Cervivor, you can find Morgan nurturing her relationships with local community partner organizations like the American Cancer Society Cancer Action Network (ACSCAN), the Iowa Cancer Consortium, and serving as a board member for Above and Beyond Cancer. Learn more about Morgan at Cervivor.org.

Taking One Step Towards Your Purpose

A little background on me. I’m Lindsay and I’m a Jersey Gal, originally born and raised. My three girls and I moved to Richmond, VA, where I met my husband in a Criminal Justice class (and he’s seven years my junior) and together we had a girl and our first and only boy. I am currently working as a One-on-One in Gaston County for the Department of Exceptional Children by way of Support, Inc. and I absolutely LOVE what I do!

Now let me jump into how I got here… a cervical cancer survivor and advocate.

It all started with bleeding. A lot of bleeding.

I have always been a regular period gal, like clockwork every 28 days, something I could count on (except when I was pregnant of course) and something I never worried about. So naturally, I was alarmed when I suddenly started bleeding irregularly. But my normal period soon came.

One day after being intimate with my husband, I started to bleed.. a lot. I didn’t think much of it and I just figured that maybe that month my period decided to stay a little longer. But a few days later, I started to bleed again. Now, I am really alarmed so I went to the ER where they told me they didn’t see anything wrong and it was normal. 

The next month the same thing happened. Only this time there were clots and it was random and more frequent, to the point I ended up wearing pads all day every day because I never knew when I was gonna bleed. There were days I would be sitting on the toilet for 45 minutes bleeding.

I went to my general doctor and I also scheduled an appointment with my gynecologist. As I was explaining everything to my doctor, I jokingly asked if I was getting close to menopause. I really thought this was happening because I was turning 45 and thought maybe my period was ending. She told me I wasn’t in menopause range and she tested me for hyperthyroidism which came back positive for Graves Disease.

I was sent to an Endocrinologist and was put on meds for Graves Disease but I was still bleeding. When I finally got to the gynecologist, who was beyond rude, he completely cut me off and was writing me a prescription for birth control pills! I told him I didn’t need to regulate my period and that there obviously something else.

He did an exam and told me that my cervix felt enlarged and abnormal and he was sending me for further scans and the Pap results would take seven days. During this waiting period, I received notifications that my chart had new test results and I saw alarming things like “mass” “HPV” but I hadn’t been contacted by the doctor yet. After a very long two weeks, I finally got back in to see him and he told me the bad news was that it was cervical cancer but the good news was that the Levine Cancer Institute was close and I would be in good hands. He told me to go to the window to make an appointment and he walked out. He didn’t explain my results, nothing. He showed absolutely no compassion and he didn’t even ask if I had any questions.

I got my appointment at the Levine Cancer Institute the very next day, which also happened to be my husband’s birthday. I met my oncologist, Dr. Casablanca and she explained my results to me and told me she wanted to do a biopsy right then and there but when she did, it aggravated the “mass” and that started what would turn into the worst and longest 10 days of my life in the hospital.

It was confirmed that I had Stage II cervical cancer and I was devastated.

The time in the hospital was filled with constant blood transfusions and prodding and pricking for IVs. My arms were bruised from shoulder to wrist. They had to perform so many “packing” procedures (where they put meds on the end of gauze and shove it into your vagina) that I lost count. And eventually had to start my radiation because I wouldn’t stop bleeding.

I was scared and confused and I never had time to fully grasp what was happening to me. Everything happened so fast my head was spinning. However, one thing was very clear, I had a lot to live for and whatever I had to do I was gonna do it.

I pushed everything else to the side and focused on my treatment plan which was five days of radiation a week for five weeks and five weeks of chemo, with five brachytherapy procedures. My mission in life has always been to make a difference. I have done that as a Coach, Mentor, Community Leader, Sorority Leader, and now as a One-on-One. My new mission is to bring awareness to this new world I was thrust into unexpectedly.

I wasn’t educated enough on the HPV vaccine and was against it for my children but with my newfound knowledge, I’m advocating for it, especially for my girls. I also could not crumble or lose my faith because I wanna be here for my children, for my grandchildren and I want to make sure they are here too. I am NOT MY DIAGNOSIS and I plan to be the voice for those that can no longer speak.

This year I held my first Health Fair/Pop Up Shop called “Get in Good With Your Health” to raise cervical health awareness in my community during Cervical Cancer Awareness Month. It was also to highlight other diseases and allow people to be able to take the steps to have a Healthier Mind, Body, and Spirit.  The event was held on January 15, 2023, at Holly Oak Park in Shelby, NC. There were local vendors such as Hoppers Soul Food Truck, Carolyn’s Paparazzi, as well as Charlotte Vendors like Sanaa Glam & Wellness and Teal Diva. Several other vendors traveled from Georgia and NJ to be a part of this event. There was information on nutritional health, cancer awareness and prevention, and Lupus awareness. We had a spiritual reader, a Zumba Instructor, and a Yoga Instructor too. It was a wellness party!

My husband and I are both passionate about our community and both have up-and-coming businesses and the event was sponsored by Group T.H.E.R.A.P.Y, which is my mentoring group, and Concrete Mentoring Corp which is my husband’s group. It was attended by friends and family who had traveled from various states to show their support for me and my vision, as well as locals in our community. I was pleased with the turnout, especially with it being my first time doing something on this scale.

I had been pretty much in a fog during my treatments and I really hadn’t felt like myself but that weekend, with so much love and support from my family and friends, I felt more like myself and it helped me to be able to push through. Really come out of the fog and focus on not only on healing but on my purpose. 

My goal is to raise awareness not only in my community but everywhere. I started here in NC and next year I plan to hold this event in three cities: Richmond, New Jersey and each year add another city until eventually there is one held in all 50 states.

This is now my new mission, to be able to tell my story and educate others where I wasn’t. It is important to be able to show people not to be afraid of the myths or stigmas surrounding this disease and how it is important to be proactive about our health and our bodies. I am NOT MY DIAGNOSIS and when I’m gone my legacy will have told my story and maybe have saved lives. 

Linsday Gullatte-Lee is a self-published author, Cervivor community member and passionate advocate for cervical cancer prevention and awareness. She is on a mission to bring her Get Good with Your Health festival to every state. We’re cheering you on, Lindsay!

Just Like Holly: We Save Lives

“We need to talk. We need to have conversations about cervical cancer and prevention.“

This could have been Holly Lawson’s mantra. Once she found Cervivor, she was all in. She gained her advocacy wings and she never stopped soaring to greater heights.

Holly was a life-long teacher, knowing that people thrive when their voices have purpose and when they are armed with knowledge. During her time as Cervivor’s Community Engagement Liaison and co-administrator of Survivor Slimdown, she elevated and supported countless patients and survivors, many who had never met Holly in person but who felt a deep connection to her nonetheless. Holly was magical and her caring heart was open to all. She had a knack for captivating you with her Southern charm but her fierceness and determination was ever-present.

Holly used her Cervivor voice on Capitol Hill to make sure her state legislature heard her story of cervical cancer prevention, she shared the stage with doctors and researchers doing work in the HPV space and she was dedicated to helping others find their #CervivorSpark. Holly never stopped advocating; never stopped sharing all aspects of her cervical cancer life for others to learn from. She showed us what resilience, vulnerability, and bravery was. Holly believed in a collective voice and she believed in the power of the Cervivor community.

Today marks three years without our @CancerWrangler but we are incredibly grateful that she made the Cervivor community her home. Holly led with wit, tenacity, and a whole lot of spunk. Her laugh and sweet southern drawl still remains deeply connected to our memories of her. Holly was a shining example of how powerful moving from a patient-to-survivor-to-Cervivor can be. She was able to utilize her voice to create change and we are better because of her dedication.

We celebrate Holly’s lasting impact by never forgetting the work she, and so many others, have done to help carry Cervivor’s message far and wide. If Holly were here today, she’d be over the moon at how we’ve grown yet always knowing how far we still need to go. Our work continues because her voice, her story, is weaved into everything we do as an organization.

Just like Holly, we do this work to save lives. We do this work because our friends and our sisters, who are no longer able to speak, can STILL BE HEARD. We must never stop advocating for cervical cancer prevention because we do have the power, we are change-agents and we hold far too many stories within us that the world must KNOW.

With Cervivor, Holly lives on.

In Memoriam
Holly Latrelle Lawson
November 8, 1978 – March 13, 2020

Hello, My Name Is Kimberly!

Hey there Cervivor community!

My name is Kimberly Williams, I’m a recurrent cervical cancer survivor and Cervivor Patient Advocate that resides in the great state of Texas! I’m elated to join Team Cervivor as the Chief Diversity Equity and Inclusion (D.E.I.) Officer. 

When I was diagnosed with cervical cancer in February 2018, it made me realize that being a mom to my two children, a double Master’s recipient in Management and Healthcare Management, and devoting 20-plus years to social services did not lessen my chance to get this diagnosis. The moment that I found out I had cervical cancer my focus shifted to desiring information concerning this disease that invaded my body.

I was introduced to Cervivor by a Cervivor Ambassador in March 2018 after my radical hysterectomy. During this time I listened, watched, and learned from other Cervivors. I faced a recurrence of cervical cancer in 2019 which led me to advocate even more! I began to share my story with those within my reach (my community, my family, and my friends). That’s when I realized that my story as a Black cervical cancer survivor mattered. There was a diverse population who were not insured or underinsured, and not receiving cervical cancer screenings, but who were listening to my story and taking action. It became a mission for me to help these communities by providing support and knowledge, and also sharing my story.

In 2021, while participating in a Cervivor event, I found my voice and drive even more. I learned how to frame my message for different audiences. This brightened my light to make a difference in the underserved communities by sharing Cervivor’s mission through my story. In January 2022, I was in shock to be given the Cervivor Rising Star award. As I accepted the award I understood there were still grassroots efforts that needed to occur to reach those aforementioned communities.

In January 2022, I participated in the Cervical Cancer Summit powered by Cervivor. During this summit participants were encouraged to join the American Cancer Society Cancer Action Network (ACSCAN) to work to impact our local communities and share our cancer stories. Based on this encouragement, I joined the American Cancer Society Cancer Action Network of Texas as a volunteer, which opened doors for me to share my story during HPV awareness events at underserved elementary schools to parents inquiring about the HPV vaccine. I also was afforded the opportunity to share my story during an HPV Roundtable event hosted by the American Cancer Society. Throughout 2022, I continued to share my story at events because I truly understood that my story mattered.

In the summer of 2022, I was chosen as a patient advocate for NRG Oncology’s Cervix and Vulva committee that reviews concepts for clinical trials, which includes ensuring a diverse population participate in the clinical trials. In September 2022, Cervivor hosted their Cervivor School in Nashville, Tennessee and I was awarded the Cervivor Champion award. What a humbling moment in my cancer journey to be viewed as a “champion”.

As I pondered the word champion I found this definition, “a person who fights or argues for a cause” and I silently agreed. Yes, that’s me. That’s what this community stands for and Cervivor helped me locate that champion inside of me! 

This revelation reminded me that this cause is larger than me! No one should die of cervical cancer, however, they still do. Black women are statistically more probable to die from cervical cancer and Hispanic women have the highest rate to develop cervical cancer. I’ve made it my mission to touch all diverse groups, regardless of race, creed, color, or gender to ensure they understand the importance of their gynecological health and cervical cancer screenings.

This community was built and founded by a Black woman that understands the struggles that Cervivor’s diverse community members face. There is a common theme that you may hear from any Cervivor which is “no one fights alone.” As a Black woman that has watched a community of Black women not able to address their gynecological health due to lack of insurance, child care, money, or understanding; I understand that my voice matters and holds weight within diverse populations. I intend to amplify my voice through this position to aid in decreasing the cervical cancer inequality gap that statistics show us. How you may ask? By ensuring that the Cervivor community members and any cervical cancer patient, survivor and/or thriver is supported and armed with knowledge to assist in this effort.

Connect with me on LinkedIn!

If social media is not your thing, no worries I’ve got you covered! Email me at [email protected]. I would love to connect with you as we work together to end cervical cancer. Don’t be shy, tell me how we can help close this inequality gap. You are a part of the Cervivor footprint, your thoughts, involvement, and voice matter!

My Sidekick Sheba

When I was diagnosed with cervical cancer, I never imagined the journey would include a new sidekick! I finished stage 3B cervical cancer treatment around August or September of 2018. About three months after treatment, I began to experience trouble going number two. It was the worst feeling ever. The times when I could go, it was excruciating, and with plenty of blood. I started to go number two again, but the weirdest thing happened. It was coming from my vagina. I had developed a fistula due to my radiation treatment. 

I went into the hospital immediately and was admitted from December 31, 2018 until January 16th, 2019. During that time, they inserted a nutrition PICC line, checked my stool, inserted a catheter, and prepared me for surgery to remove some of my bowel and colon. My doctor explained that there would be a possibility that I would get a colostomy and he may remove my uterus, but it depended on the damage they saw inside. When I woke up, I was informed that the surgeon had removed my right ovary and fallopian tube, and I had a colostomy bag.

The nurse gave me care instructions and I learned to care for my new sidekick. I went through stages of confusion, anger, fear, and insecurity. After getting used to it, I named it, Sheba, and called her my sidekick. I’m a bit more comfortable with it now, but sometimes I still struggle with public participation because of how active it is. 

I’ve been diagnosed with body dysmorphic disorder since receiving it because of my constant worry about how I look with a shirt bulge or certain things that I now become obsessed with. Although I’ve gone through these struggles, I’ve learned to appreciate having my colostomy bag, as it has saved my life. I feel better knowing I can use the bathroom without getting infected or hurting myself even further. 

I get better each day as I learn and grow. I am living and taking it one day at a time, as I make new goals and step out of my comfort zone. I wouldn’t have it any other way. I am a CERVIVOR!

Kyana Johnson resides in Orangeburg, South Carolina. She is a stage IIIB cervical cancer Cervivor, colostomate, and Marriage and Family Therapy student. Cervivor has always been Kyana’s safe space, information hub, and a great place to come together for a cause greater than us. Cervivor is her inspiration for her advocacy efforts. 

Cervivor Takes Manhattan!

As we wrapped up the last weekend of Cervical Cancer Awareness Month (CCAM), we headed to New York for a monumental event that started off this year’s Cervical Cancer Summit powered by Cervivor.

Founder Tamika Felder, along with members from the Cervivor community, were invited to ring the closing bell on Nasdaq. Tamika’s call to action to the world, “Join us in this mission because no one should die from cervical cancer.” And the world is listening!

Photography courtesy of Nasdaq, Inc.

We kicked off the 2023 Cervical Cancer Summit in partnership with Jacobs Technion-Cornell Institute, it was truly an inspired and innovated conversation with Eve McDavid, a cervical cancer survivor and Fem Tech entrepreneur, along with the brilliant Dr. Onyinye Balogun and Fernando Gomez-Baquero. By using the patient voice, they are developing a revolutionary new device that will transform Brachytherapy, which still uses the same barbaric process that was developed in the 1970’s, with no regard for the actual female anatomy. We are excited to see more innovations like this happening in treatment altogether!

We continued with the patient voice perspective with members of the Cervivor community speaking on the Power in Patient Voices with Arlene Simpson, Yvette Torres, Kadiana Vegee and Kate Weissman. They shared how the collective Cervivor voice can bring more visibility and influence change, working towards our common goal of ending cervical cancer.

Dr. Rebecca Perkins joined us for Expert Hour on all things cervical cancer and HPV. You can tell that Dr. Perkins is very passionate about educating others to understand the importance of HPV vaccination and cancer prevention. “HPV vaccination is cancer prevention!”

The day continued with a session on Emotional Resilience: Survivorship & Support. Community members Anna Ogo, Tina Vetreno and Tiera Wade joined presenter Danielle Modlo, who is a Certified Nurse Practitioner at Cleveland Clinic, really brought to the surface what cervical cancer patients and survivors face from a mental health and wellness perspective during and after treatment.

Joslyn Paguio, Cervivor Podcast host, lead a conversation on Sexual Health with Dr. Rosemary Basson on how we navigate our ‘new groove’ through our physical and emotional changes that cancer brings to our sexual desires.

Our last panel discussion was on Navigating a Cervical Cancer Diagnosis and Treatment Options – What’s Best for Ourselves with Ayanna Bass, Karla Chavez, Carol Lacey, Jenn Myers, Karen North, Selena Ruston and Kimberly Williams. We discussed how we make sense of everything we go through from diagnosis and beyond, and choosing the best treatment plan for you which may include clinical trials, more surgeries, or second opinions.

Just as the day began, we ended with an exhilarating bang as Dr. Cindy Trice shared her personal cervical cancer journey and how years later that journey helped create and fuel KickIt Pajamas. She truly turned her pain into purpose and we just love her company’s mantra, “Friends don’t let friends have hospital butt.” Her inspirational talk left us laughing and crying.

Last but not least, we celebrated five new Cervivor Champion Award recipients for going above and beyond with the mission of Cervivor being their driving force. Join us in congratulating these outstanding individuals as our 2023 Cervivor Champions!

Eve McDavid & Dr. Onyinye Balogun, Mission Driven Tech

Kate Weissman, Yvette Torres, & Tina Vetreno

Advocating For Myself: The Importance of Follow Up Care

When I was asked to write a blog for Cervical Cancer Awareness Month I happily accepted, but soon after the irony hit me. Awareness is something I did not have when it came to cervical cancer. Awareness is the single thing that got me into this situation in the hopes that no other woman is punished for their ignorance as I have been.

Jessica with her family

About 15 years ago when I was 21 years old, working two jobs and going to college full time, I had a pap test. I didn’t have it because I was being responsible for my health or anything like that, I had it because the only way to get birth control was to do an annual pap and I wasn’t ready to be a parent. I could barely care for myself. It came back irregular, and I was told they’d need to do a minor procedure called a colposcopy to make sure everything was okay.  The “minor” procedure was where an OBGYN goes in to clip a piece of your cervix off to biopsy. It definitely didn’t feel minor, and the memory burned into my brain forever as a “never want to experience that again” item along with wrecking my car and eating mayonnaise. 

Fast forward to three years ago and I had just moved to Spokane. I had decided to get a new birth control, so I went and found a new OBGYN (would there even be women’s health if we weren’t always concerned about being pregnant?). Five minutes into the appointment and I didn’t love the guy, which is saying a lot because it doesn’t take very much for me to love you. He was cold, direct, and impersonal. I get it, as a doctor you have to have a little bit of that in the field, but this individual was just not my cup of coffee (NOTE: I substituted coffee for tea here because I think all tea is dirt water). He told me I needed to have that horrible procedure again as a “precaution” because I had a strange-looking spot or two. Really, I wasn’t informed of how serious that could be, or what the spot meant, or anything. Now, I’m not saying it was his fault that I didn’t return after that day to get another colposcopy, but I do believe if things were explained a little more clearly, I would’ve returned to get my procedure. 

Doing another time jump, I had now avoided having another pap for two years, but hey, surprise, my fertility brought me back into the stirrups (the hospital kind, not the horse kind). My lab results had come back positive for HPV 16. There’s a lot of stigma with HPV and being someone who’s never had any sort of STI, I was horrified. But the truth is about 90% of people have HPV and have no symptoms for their entire lives. The problem with my HPV is the number behind it. That number is known to cause cancer. Finally, my amazing new doctor sat me down and let me know what that meant, and how important getting a colposcopy was. Unfortunately, because I was pregnant with my little miracle, they couldn’t take the actual sample of my cervix, but still wanted to schedule a couple “look and sees”. 

When my OBGYN took over the process, she did my first biopsy-less colpo. She even showed me what she saw and pointed to a couple white spots in my cervix that she thought looked suspicious but “definitely weren’t cancer”. Over the next nine months I did those two more times, both of which I had to remind my OBGYN about. Finally, when I was six weeks postpartum of delivering the world’s most majestic little angel baby, I again reminded my OBGYN about getting my colposcopy. It was horrible and I threw up when I got it done. 

Jessica & Kenny

When I got home that night, lying in bed with my husband and talking about our day, I suddenly got quiet. He asked me what was wrong, and I replied that I knew I had cancer. I was sure of it. Of course, he didn’t believe me. I don’t even think that possibility was in his mind, even when I said it out loud. But something innate confirmed it, as if despite having zero symptoms my body knew there was something inside of me that wasn’t right. Sure enough, one cone and PET scan later it was confirmed, Stage 3 cervical cancer. 

In retrospect, I know it’s cliche but “everything really does happen for a reason.” It’s weird to say, but I am glad they didn’t catch my cancer earlier. I am glad because usually, the treatment for stage 1 cervical cancer would be a radical hysterectomy. If my cancer had been caught earlier, I would’ve never had my son. I would endure 1000 cancers for him to be born. That being said, if I would’ve had my procedure done three years before, I would likely have caught all of this before there was cancer. So, really this just boils down to taking responsibility of your own health. No one will do it for you. And just because you “feel” healthy, doesn’t mean there isn’t something lurking inside. If you take away anything from this, take the initiative to get an annual pap, and further, if something is irregular, take the follow-up. Be aware of this extremely horrible but preventable disease.

Jessica lives in Spokane, Washington with her husband, 5-month-old son Kenny and 6-year-old step daughter Kyla as well as their two dogs, Cane Corso Bruce and Boston Terrier Elvis. She works as a large enterprise senior account executive for Gartner. In her spare time, she enjoys snowboarding, wakeboarding, golfing, showing her dogs in conformation, riding her horse and spending time with her wonderful family.

Bringing Bigger Dreams to 18

“Your birthday is the beginning of your own personal new year. Your first birthday was a beginning, and each new birthday is a chance to begin again, to start over, to take a new grip on life.” — Wilfred Peterson

Cervivor, Inc. is celebrating eighteen years as the leading voice in cervical cancer patient advocacy. We have been at the forefront of change, of dismantling stigma, and of pushing toward a future free of cervical cancer. Cervivor has also been a place of connection and support for so many affected by cervical cancer. It hasn’t always been so apparent as this community has grown and evolved over time.

When Cervivor founder and chief visionary, Tamika Felder started this organization, it was because she knew there was power in a collective and knowledgeable voice. She knew that others like herself needed a community and a purpose that gave back what cancer tried to strip away. A community that refreshed our strength and resilience skills to overcome the trauma we have experienced. She strategically used the tools she possessed as a lifelong storyteller and compassionate change-maker. Tamika created, as she always says, something she didn’t have as a young adult and cervical cancer survivor.

What started as Tamika & Friends, Inc., supporting cervical cancer survivors and their families, evolved and grew because Tamika knew the future held endless possibilities for empowered and educated patient advocates who wanted to show the world that cervical cancer has a multitude of faces and backgrounds. She knew that by simply sharing our cervical cancer experiences, people would listen and that meant change was possible. We are going to officially put an end to the shame and stigma behind a cervical cancer diagnosis and hopefully one day to the disease itself.

Eighteen years later, Cervivor has a global reach and our partnerships across various health disciplines brings our work of cervical cancer awareness, prevention, and support to even more audiences — policymakers, researchers and medical teams, educators, and even The White House.

Cervivor continues to support newly diagnosed cervical cancer patients, as well as create spaces for those seeking to connect and those wanting to add to our advocacy footprint. We have come so far since the early days of our HPV/House Party of Five but still have more work to do. We have more lives to help save and honor the lives of those who are no longer with us through our work.

We will continue on but we need your support. Please continue to be visible as our supporters, advocacy partners, friends, and family. We cannot do this work alone. Start by donating $18 today in honor of Cervivor’s 18th birthday.

Lastly, let’s sing a happy birthday tune to our beloved organization, because #WeAreCervivor!

We Are Cervivor: Spirit Week 2023 Recap

Cervivor Spirit Week gives our community a chance to bring some fun to an otherwise serious topic of cervical cancer awareness and prevention. As our Cervical Cancer Awareness Month Committee Co-Chair, Jenn Myers says, “It can be a heavy topic but we are the voices that need to do this work.”

We definitely had a ton of fun with everyone this week as we splashed social media with so much teal & white awareness! We love how many people took notice, shared their stories, and joined in on our cause.

Cervivor Español unofficially kicked off the spirit week with a MeetUp on Saturday then we transitioned into the theme days starting on Sunday! Sports Day Sunday brought out all the sporty-Cervivors representing their favorite teams. Lisa Gopman reminded us to get our cervical cancer screening and vaccinate our kids against HPV all while showing off her Bengal pride.

There were so many great Movie Monday quotes from some classic Hollywood films. Kel Bel spent the weekend watching Harry Potter movies with her daughter while recovering from her hysterectomy and shared this Albus Dumbeldore line that hits her every time, “Happiness can be found even in the darkest of times, if one only remembers to turn on the light.” Mic drop.

Our Cervivor Noir and Cervivor API groups kicked off their inaugural MeetUps to further our commitment to diversity, equity, and inclusion for anyone impacted by cervical cancer. There were stories shared so powerful and we cannot wait to see the work they all do in furthering our mission to end cervical cancer. (If you identify as Black, join Cervivor Noir and if you identify as Asian or Pacific Islander, join Cervivor API).

On Talk to Me Teal & White Tuesday we asked you what Cervivor means to you and here’s what you shared with us.

“Cervivor means no one fights alone.” ~ Christy

“Cervivor means sharing our stories and using our voices to spread awareness and to end cervical cancer and to let other women know they are not alone.” ~ Brooke

You gave us all the cozy vibes on Warm Up Wednesday and Cervivors were sharing pics snuggled under blankets and some with their pets. Joy shared the unconditional love from her cat and Arlene was living the Wonder Woman Snuggie life.

Joy & her cat
Wonder Woman Arlene

The favorite food of choice on Tasty Thursday seemed to be none other than… tacos! They really are the perfect food! Sharing our tasty treats helped us get ready for Saturday’s amazing session, Cooking with Tracy Citeroni, who demonstrated a versatile, healthy and delicious quinoa ‘risotto’. You can grab the recipe here to cook on your own!

We even kicked off our first-ever Cervivor Book Club meeting by discussing Brene Brown’s Daring Greatly! As we headed into our weekend, we asked you to share your happy places on TGIFriyay. Sand, surf, mountains, lakes, fireside, wilderness trails, and museum strolls hit the top of your lists for joy-inducing places we like to be.

Phyllis captured magic in Hawaii
Kristine’s sunset
Amanda’s trail

And we ended this year’s spirit week with a favorite, Sock It To Cervical Cancer to bring out your favorite statement socks with a Cervivor flare!

New Cervivor socks!
Tasha
Rachel

Through this time, we continued to honor the joy and Cervivor spark of our late Cervivor sister, Jodi Madsen. Cervivor Spirit Week was one of her favorite things from last year and she was a master in fun content creation and social media advocacy.

We hope this week has inspired you to continue these ways of advocating throughout the rest of 2023. It is truly incredible to see the power of our community and it’s a great reminder that we are Cervivor and we are unstoppable!

The Elephant in the Room

It’s probably time to address the elephant in the room – Stage IV cancer. Words that typically come along with this stage diagnosis are incurable, terminal, and life-threatening. In my case, my cervical cancer has metastasized and spread to my collarbone and armpit area. Compared with many, my Stage IV is ‘minor’ because it is not present in my blood, bones, or brain. BUT it is incurable. The goal is to treat until we reach a point of NED (No Evidence of Disease), a pseudo remission. And for the remainder of my time, I will need to regularly test for recurrence. 

So, I’m not going to live forever; who is? And maybe I won’t live as long as I hoped, but there are new advances in treatment daily! I don’t discuss this part of my cancer journey very often because I refuse to give it any credence.

What I find curious is that I didn’t invite that particular elephant into my room. It was placed there by others. I know cancer is an uncomfortable subject for many, but to quote Monty Python, “I’m not dead yet”, so please don’t treat me like I am! 

The elephant in my room is a very different beast. Meet Ganesha! Ganesha is a Hindu deity that is known as the remover of obstacles. He is a symbol of prosperity and wealth, and he is believed to bring good luck. This is definitely the elephant I need in my corner; a hopeful, powerful and positive force! 

I believe that “the diversity of faith should be appreciated and celebrated.” (Stephen Mattson quote) That’s why I’m so appreciative of any prayers, positive vibes, or good juju sent my way. I’ll take it all and return it tenfold, should you need it! My ultimate goal is an honest relationship with my creator and maybe in my world, gods and elephants occupy the same space!

There are a few more elephants that I choose to have in my space and one of them is my support group. “In the wild, female elephants are known as fierce protectors. And when one of their sisters is suffering, they circle up around her. They close in tight, watch guard, and even kick dust around her to mask her vulnerable scent from predators. And yet, we are the same. This is who we are, and who we are meant to be for each other. Sometimes we’re the ones in the middle. Sometimes we’re the ones kicking up dust with fierce, fierce love. But the circle remains.” – From the Festive Farm Co.

The last elephant in my room is my mom. She was the first lover of elephants I knew (a byproduct of living in Thailand). I fondly remember her collection of elephant figurines, turned towards the window to keep the bad luck at bay. Sadly, she passed from liver cancer ten years ago, but she would have been the first to lead the charge to circle up in support. And her wisdom and strength are ever present in my room (and life), because like elephants, love remembers.

And so, my journey continues. With a lot of faith, hope, love, support, and my elephants, I plan on living every day to the fullest!

Christy K. Chambers is a world-traveling, military brat who moved to the east coast for college and never left. She currently resides in Monroe, North Carolina with her husband, son, and doggo, Ethel Mertz. A Jill-of-all-trades, she has had multiple careers in theatre, stage lighting, commercial printing, retail and paper arts. Christy was diagnosed with Stage IVb cervical cancer in May 2022 after she went for a routine Pap test. She completed round one of treatment in August 2022 and is currently being treated with immunotherapy.

When Cervical Cancer Side Effects Bring Life-Altering Changes

After completing my oncology protocol and hysterectomy for my cervical cancer, I developed a rectovaginal fistula. This meant that due to the radiation I received, my colon and vaginal wall merged. I like to think of it as when you burn two plastic sheets together, they become one. At some point, a tear began to form, and it developed into a fistula. 

How did I find out about the fistula? I can’t pinpoint the exact moment, but if I look back, I do remember a very sharp pain after I sneezed about four weeks after my hysterectomy. Later that week I noticed a different color in my urine and some pain each time I went to the bathroom. I called my doctor and he said he would like to check it out. By the time I went I was passing small clots, I was unaware if it was due to the surgery or an infection. When the doctor ran his tests, and the pelvic exam being the most painful one, he confirmed that a fistula had been formed. It was about one centimeter in diameter. 

Photo from GynecologicSurgery.com

A week after my initial exams, I started passing stool through my vagina. That part of it has been the most horrible part of my life after cervical cancer treatment. I was told to wear diapers during this period, but I didn’t want to, so I started using maxi pads. I would be needing to change them at least 4 times a day. Going to the bathroom was painful and uncomfortable. I was battling pain and infections during the next couple of months until all testing was completed to see the course of action my doctors wanted to take. I started carrying an extra pair of jeans and 2-3 pairs of underwear because of the accidents. Doctors told me not to go to work during this time, but I really didn’t want to stay home. I needed to be doing something to take my mind off it. I made a strategy plan; I parked my car next to the nearest bathroom at my construction site. That way it was easier to get to my emergency bag and I had my brother working close by so I would call him up if I had any accidents that might require extra assistance. I also told two of my male coworkers what was going on with me just in case anything went wrong. 

The most traumatic moment for me was when they had to perform the colon enema test on me. I remember I was that table being pumped full with barium and then just noticed my legs getting wet. I began crying and told the doctor that I was peeing myself. He said, it’s okay and they can clean it up. But I couldn’t stop crying and then I started to panic. He put his hand on my head and told me to breathe, he said he knows how painful this is but he needs to find out what is going on. When it was over, there were nurses in the room cleaning me up, that’s when I noticed that the bed and the floor were covered in my feces and barium, that came out of my vagina. To this day, it has been the worst experience I have ever had. 

I remember changing in the examination room stall crying, feeling embarrassed, and with the desire to hug my brother who was waiting for me. There have been many beautiful things in my life, but that hug, that hug made me feel so safe. The doctor explained the extent of the damaged I had and that my surgeon would recommend getting a colostomy. 

I am grateful for my colostomy, it has made my life less complicated. 

Karla with her brother

Living with a tiny fistula, has changed my life, but has not stopped it. I did try Crossfit for two weeks but had to be checked since I started bleeding a bit, which showed that the fistula had become larger. So, now I stick to low impact activities, like walking and stretching. I have little to no infections and luckily I am off Tramadol and Dexketoprofen, which was the protocol I had for pain management.

My fistula is still here. In my last exam the doctor said it was barely detectable. I am still not sure if it will heal, statistics do not support this idea, so we know that my ostomy is becoming permanent. Which I don’t mind.

Karla Chavez is a Cervivor Ambassador, Cervivor Español Co-Lead and a 2022 Cervivor Champion Award recipient. Karla is a civil engineer in her home country of Honduras and she’s an amigurumi enthusiast.

How Cervivor Empowered Me

My doctor called me on November 11, 2020, and told me over the phone that I had cervical cancer, and after I slid down the kitchen counter and physically got up off the floor, I started Googling ‘cervical cancer’. I knew where my cervix was and I knew I had cervical dysplasia in my 20s that had gone without treatment as it disappeared and the next pap was normal. But all of a sudden, I was a cancer patient. I was going to have a radical hysterectomy and bilateral oophorectomy. I was going to be genetically counseled and tested to find out I had a BRCA gene mutation. My body had turned against me. When I learned cervical cancer and HPV were linked, I was convinced I was contaminated and dirty and bad. It was the height of the pandemic and I was alone and scared. 

I found Cervivor on YouTube first and watched every video. Later I found Cervivor on Facebook and joined I’m A Cervivor! and introduced myself. Between the website and all the Cervivor stories, I became informed. I understood my options and I understood what my experience might be like. I had this knowledge and a sense of community, and I felt empowered. I was ready to fight cancer because of Cervivor.

The Cervivor community was a lifeline on those nights I was afraid I was dying. It is still a part of my daily life today, after my one-year cancerversary. With Cervivor, we laugh together, we cry together, we learn from each other, we share our stories, we live our lives, we are still living, and we honor those who are no longer with us. Now that I am a survivor of Stage 1A2 cervical cancer, I am helping to support others by offering my shoulder to lean on and sharing advice and experiences with others going through the same diagnosis.

Cervivor is my support and hope. It felt like finding my family because I am an orphan and have no living family. They were at my side in the OR as part of my visualization exercise for a successful surgery. They were there as I dealt with the consequences of my surgery. Suddenly, I had a beautiful diverse rainbow of sisters from all walks of life, and we were all joined by our experiences and making sure that no one else would go through what we had gone through if we could help educate others. I learned something from every single one of them and continue to learn from them at every meetup and through every call and text to a Cervivor sister. 

Cervivor has changed my life for the better. Programs from Cervivor comforted me after surgery and inspired me to take control of my body and my health in ways I had never done before. For example, I’ve lost 54 pounds and I’m healthier than the day of my diagnosis. I may not have any female reproductive organs in my body anymore, but I am still a strong bad@&$ babe. I am still fighting and adjusting to my body after cancer treatment, but I am also fighting for others, and I will never give up!

Cervivor taught me that cervical cancer actually gave me a superpower – the power to save lives by educating people on how we can end cervical cancer. Our stories matter. We are personal experts in our stories of cervical cancer and how much it takes from us. Cervivor teaches us to give back by raising our voices. Knowledge is power. The information and resources about HPV and cervical cancer from Cervivor can encourage vaccination and give patients the support they need. 

Cervivor prepared me and supported me, and now I am paying it forward in my community and online. For me, “Informed. Empowered. Alive.” is one of my life’s purposes now. Thank you, Cervivor, I love you! Each and every one of us, no matter where we are in the cervical cancer experience – from those who have had dysplasia and an HPV diagnosis to those of us who have metastasized – it is an honor to count myself amongst us. We are empowered! Let’s make cancer pay!

Pixie Bruner lives in the Atlanta metro area and is already a one-year survivor of stage 1a2 cervical cancer. She is a roleplaying game author, poet, historian, and academic guest lecturer on Classical Studies. She is a NASA Night Sky Network award recipient for education. Her hobbies include art, stargazing, dressing like a cat, coloring (including her hair in random crazy colors), and she is a voracious bookworm under five feet tall. Pixie advocates for cervical cancer awareness by sharing Public Cervix Announcements to total strangers. She is currently starting a joint project with other survivors in her area (Teal Sisters of GA) to fight the stigma of HPV, crush the ignorance of cervical cancer and HPV-related health issues, encourage HPV vaccination, and educate on cancer screenings and treatment for everyone.

Blank Verses, Short Stories, and Other Musings

Each night, I climb into bed, prop up on my red, corduroy reading pillow that has followed me from college all those decades ago and slowly open a small, bound book. Pen in hand, I take a deep breath and begin a scribbled conversation that has kept me sane since my April diagnosis of synchronous cervical and uterine cancers. That book, this pen, those words are my free therapy. And I am better for them.

The magic of words was made plain to me in childhood. I taught myself to type on Mom’s gunmetal gray, Royal Underwood typewriter, pecking away on two fingers to churn out a neighborhood newsletter. Adolescence brought dreams of growing up to study Creative Writing, joining a writers’ colony in the Vermont woods and becoming the next Nikki Giovanni, Alice Walker, Gwendolyn Brooks…you see where this is going? Well, as too often happens, adulthood altered those dreams, and this English Literature major became a government trial lawyer in Massachusetts—still using words to shrewdly sway jurors and to sharply skewer opponents—but I always maintained a growing collection of blank verse, short stories, and other musings that one day could be shared with somebody. Anybody.

Doris’s cancer journal

Perhaps all that explains why one of the first errands I made immediately after my diagnosis was a search for the right journal to house my feelings—all the scary, happy, and unnamed things that would come my way along this journey. This vessel could not be flimsy or cheesy. No, buddy. This word-keeper had to be worthy of the emotions that would leak out onto its pages. Here is where I would explain how this “cancer thang” discombobulated us all. 

I had always proclaimed that I planned to blow out candles at my centennial birthday party. How could the threat of mortality come knocking at my door now, when my married daughter in Mississippi (Lord help us) needed me after giving birth to our first grandchild in March? And my son was 2,000 miles away in the Boston area, having just survived a divorce and a torn Achilles tendon. He had a hard time handling my illness. My husband was trying mightily to cope with his own anxieties about my health and all the myths and stigmas associated with cancer. This was way too much for a cheap, lightweight notebook. Only a special book could cradle those complicated realities.

My chosen, pink pen pal has never failed me. Its sturdy pages have given me space to vent about the things it has been hard to articulate to folks: the chest port that feels reminiscent of alien abduction anecdotes; the tutorial on dilator use that made the nursing assistant blush; the way I could discern the texture of food (even water), yet not its taste; the exhilarating freedom of a shaved head displayed to all the world. And it has let me weep onto its cream-tinted pages, wrinkled testament to the overwhelming sadness that comes with this journey at the oddest times. 

This journal is so much more than frequently illegible cursive words. No, these pages are quite often a battle cry, this warrior’s call to arms against the most unexpected enemy: her own cells. These pages are like an old-timey, gutbucket, blues chart from backwoods juke joint—a full-throated, belly-wail of agony and joy, growled by one who knows the score (literally and figuratively) and ain’t afraid to tell you all about it. And, always, always, that hard-cover book is my hymnal, sketching lines of praise to Him in Whose armor I outfit myself every day. This little unassuming book contains uniquely metered lyrics of love and faith and strength. 

I will write my way out of this Egypt. The inked lines will chart the path to my Red Sea….

A sixth generation Texan from San Antonio, Doris Helene White earned a B.A. from Central State University in Ohio (an historically black institution) and a juris doctorate from Boston University School of Law. Her career in the government sector as a Massachusetts trial attorney reaffirmed her commitment to an equitable legal system. Retired in 2014, Doris returned home, where she indulged a passion for writing, became an amateur advocate for the history of African Americans in these United States and continued active affiliation with San Antonio Black Lawyers Association, Delta Sigma Theta Sorority, Jack and Jill of America, Bethel African Methodist Episcopal Church and other community organizations. Her husband Steven Soares, daughter Dr. Leigh Soares and son Steven Cooper Soares lead the best “cancer posse” in the galaxy! 

A Pandemic Whirlwind: Pregnant with Cervical Cancer

“You have cancer.” Three words that no one ever wants to hear, certainly not during pregnancy… and certainly not when the part of your body the cancer has invaded is your cervix.

I will never forget that day. It was August 6, 2020. I was 34 and 20 weeks pregnant with my son, Karson, and those three little words turned my world upside down. As if 2020 hadn’t been tough enough already with suffering a miscarriage and dealing with a global pandemic, I was now living in a whole new nightmare. I had tested positive for HPV-16 and had an abnormal pap with HGSIL (high grade squamous intraepithelial lesions) in February after my miscarriage, but my doctor didn’t talk to me about any treatment at that time. I had put off having a pap, and with the guidelines back then, I was over a year and a half overdue. Two days after my birthday in April, I was surprised to find out that I was pregnant again, just two months after my loss. 

I had a pregnancy confirmation appointment in May, but with appointments being pushed back due to COVID, I didn’t have my colposcopy exam until July 2020. My OBGYN reassured me that while she was concerned about what she was seeing during my exam, she didn’t think that it was cancer. I had never had an abnormal pap before and knew plenty of women who had abnormal ones all the time, so I really wasn’t too worried when I was referred to a gynecological oncologist to complete a biopsy at 19 weeks pregnant. When I sat down across from my GYNONC for my results and was told that I had squamous cell carcinoma of the cervix, stage IA1 (later amended to IB1) at 20 weeks pregnant, I felt completely broken. I remember thinking, why was this happening to me? And what had I done to deserve this?

Since I had already suffered a miscarriage earlier in the year, I was less concerned for myself and more terrified of what cancer could mean for my little miracle growing inside me. I knew the stage was early, but I still feared it could be worse than what the biopsy showed and had so many questions and concerns. Could I carry to term? What were my treatment options? What were the risks? Could it wait? Was I going to die and leave my children without a mom? And the biggest concern of all – what about my baby? Would I have to choose between my baby’s life and mine?

The day of my diagnosis was a whirlwind. I was so thankful my husband, Tyson, was allowed to be with me for support. Since it was in the middle of the pandemic, many appointments were restricted to patients only and no visitors. We spent the entire day at the hospital. I was scheduled for my cold knife cone surgery and we went straight from my GYN oncology appointment to do pre-op testing and bloodwork, then to see a high-risk OB. They did an anatomical ultrasound to check on Karson and measured the length of my cervix to see how surgery might affect my pregnancy and ability to carry to term. We were educated on the risk of incompetent cervix and premature delivery, and the possibility of having to have a cerclage if my cervix started opening. I remember leaving that appointment feeling very uneasy about what they might find during my surgery and afraid of the possibility of having to make an impossible choice if my staging ended up being worse than we thought.

We had our gender reveal on August 8, 2020, just two days after I was diagnosed. We really needed some joy, so we decided to have the party as planned. With everything else going on, my husband and I had decided during our anatomy scan that we didn’t want to wait to find out the gender for ourselves, so it was no surprise when my bonus son hit a baseball and it shattered and blue powder flew everywhere. We decided to tell our close friends and family about my diagnosis that day. There were countless hugs and so many tears shed when it should have been a time of celebration. I had my cold knife cone surgery two days later. Due to being pregnant, general anesthesia was too risky, so I had a spinal epidural and stayed awake for my procedure. They checked Karson’s heart tones before and after surgery to make sure he was okay. After my surgery, I felt so anxious when I was still numb and couldn’t feel if he was moving or not, I was so relieved when the epidural wore off and I could feel him again. On August 19, 2020, I saw my GYN oncologist again to receive the pathology results from my surgery. The news was not what we wanted to hear, and my diagnosis was changed to stage IB1, grade 2.

We talked through treatment recommendations from the tumor board, as well as potential risks. I remember her telling us that the surgical margins were clear, but she was concerned that the cancer may have already spread due to being unable to do the proper scans in pregnancy. She explained that I had grade 2 cell changes which grow and spread more rapidly, and that cancer can sometimes progress more quickly with pregnancy and hormonal changes. We were told about possible growth restriction for Karson in utero and the possibility of hearing loss for both of us from the Cisplatin. As terrifying as it was, I decided the potential benefits outweighed the risks and chose to follow the recommendation to do chemo treatments, knowing that I might also need to do radiation after Karson was born. 

Brooke at treatment

I remember so many people were shocked that chemotherapy was even an option in pregnancy (it is an option in second and third trimester when the baby is more developed). Cervical cancer diagnosis during pregnancy is rare, with only .5-3% of women being pregnant or postpartum at the time of diagnosis. I was one of less than a handful of women that my team had treated for cervical cancer while pregnant, but I put my full trust in my medical team and in God to see us through it. 

I was told that I would need to have a scheduled c-section at 37 weeks to hopefully avoid going into labor on my own, which would include a higher uterine incision to avoid disrupting my cervix and potentially spreading cancer cells. I was also told not to anticipate being able to breastfeed. I had a vaginal delivery with my daughter, Kaydence, and had breastfed her for 18 months, so hearing this was disheartening. I felt very scared, angry, discouraged, and alone. I started searching for cervical cancer support groups on Facebook to try to connect with others who had faced what I was going through. I was lucky to find Amie, another woman who was diagnosed with cervical cancer while pregnant and was going through the same treatment as I was about to be. Through Amie I also found an organization, Hope for Two, that connects women who are pregnant with cancer with other women who have been pregnant with the same type. I sadly didn’t know about Cervivor at the time, but it was reassuring to connect with Amie and my Hope for Two support, Devon. It helped me to recognize that I was not alone, and they gave me the hope that I desperately needed. 

I did my first chemo treatment of Cisplatin and Taxol on August 25th, 2020 at 22 weeks pregnant. I asked a lot of questions during my education appointment prior to starting chemo and they were very thorough in explaining everything, but nothing could have prepared me for it. I didn’t expect how tired I would be, or how long treatments would take with the bloodwork, oncology appointment, pre-meds, and then the actual chemo itself. I was one of the first patients there each time and the last one out and slept through most of the treatment. 

Brooke & her family

Two weeks after my first chemo treatment, my hair started falling out. At first it was just a little, then it was handfuls. I had ordered several head scarves as a precaution, but it didn’t prepare me for the heartache of losing my hair. I received a wig from the cancer institute and had a dear friend shave my head for me after my second treatment when my hair was so thin that I couldn’t stand it anymore. I was shocked that I didn’t cry; it was empowering to have control over something when so many things were out of my control. I never in a million years would have imagined having to wear a wig or fake eyelashes for my maternity photos, but with the help of a makeup artist/hairstylist friend I felt so beautiful, and our photographers captured some amazing memories for our family.

I continued chemo treatments every three weeks for a total of four treatments, with my last one completed at 31 weeks pregnant. I was very blessed to have minimal side effects from chemo. Other than fatigue, I had side effects related to the steroids I was taking – trouble sleeping prior to treatments, redness in the face and chest after treatments, increased urination, and heartburn. 

During this time, I was also going to routine appointments with my regular OB and to see my high-risk OB every two to three weeks to check on Karson to ensure that the chemo was not stunting his growth or affecting his development. Unfortunately, I added another diagnosis at 28 weeks pregnant – gestational diabetes. Now instead of worrying that Karson would be small from the chemo, we worried that he might be too big from the diabetes, along with some other possible risks. I tried to adjust my diet but the steroids I was given for chemo made it difficult to keep my blood sugar down. I ended up having to check my blood sugar and inject myself with insulin several times a day for the remainder of my pregnancy (NOT a fan). 

Despite the many challenges we faced, we found joy and comfort in getting to see our baby boy often with all the ultrasound and biophysical profiles during the second half of my pregnancy. In fact, we had so many done that we have a photo album full of just ultrasound photos of Karson. 

Brooke with Karson and Tyson

I was originally due on Christmas Eve, but my c-section was scheduled on December 8, 2020, at 37 weeks and 5 days. I remember so many emotions that day – happy, scared, nervous, anxious, excited – but I think the strongest one was the feeling of relief. It felt like the light at the end of the tunnel, he was my blessing in the struggle. I will never forget the emotion I felt when the doctor lifted Karson up over the drape and I saw him for the first time, my perfect little 7 lb. 2 oz. miracle. My husband and I both wept with tears of joy that our baby boy came out okay. He was the most beautiful thing I had ever seen. With everything Karson and I went through, I feel like we will always share an indescribable bond. I kept a pregnancy journal to give to him when he is old enough to understand. I can’t wait to tell him about what a tiny warrior he was, even before he was born.

While my doctor was closing me up, my husband ended up going into the other room with Karson and the nurses while they worked on his breathing and cleaned him up. I was not allowed to have a doula or extra support with me, so I laid there alone, scared, and wondering if everything was okay. Unfortunately, Karson had trouble transitioning and had fluid in his lungs, constant grunting, and increased respiration rate. 

When I finally got to hold him when we were in the recovery room, I wanted to hold him and never let go. I was determined to breastfeed him for as long as I was medically able, however long that would be (we made to it to two years and are working on weaning now). Karson was ready to nurse right away and latched like a champ. The doctors were still concerned but since a NICU room was not available, Karson was allowed to stay in our room overnight with special monitoring. He was taken to the NICU first thing the next morning and spent a total of 7 days there due to issues with his breathing and heart rate. 

Brooke & Karson

We brought him home on December 16, 2020 and our family is complete. Karson is now a happy, healthy 2-year-old with no hearing issues or other noticeable effects from chemo. 

I had my first PET scan following treatment on January 29, 2021. The waiting was hard, but they wanted to give my uterus time to go back to its normal size. I was so relieved when my results indicated no evidence of disease. On March 30, 2021, at three months postpartum, I had a radical hysterectomy at the recommendation of my medical team. Even though my husband and I had already planned to be done having children (he has a son from a previous marriage, and we have two together), I still struggled with the fact that the choice was no longer ours alone and was so final. I had hoped one day that my husband would have a vasectomy, but I didn’t imagine that I would go through such a major, life-altering surgery. They removed my uterus, cervix, upper part of my vagina, fallopian tubes, surrounding tissue, and 10 lymph nodes from my pelvic area. They also removed a cyst from one of my ovaries but left my ovaries so I wouldn’t go through early menopause (hopefully!) and moved them up in case I would ever need radiation to my pelvic area. I have a scar that runs vertically from my c-section scar up and around my belly button. The pathology from my hysterectomy came back clear and praise God I have had no further evidence of residual or metastatic disease from any of my scans! I celebrate January 29, 2021 as my cancerversary date, the date of my first clear scan. 

Pregnancy is hard. Pregnancy with cancer is harder. I am so grateful to have had amazing support and care from my medical team, friends, family, and strangers that I have never even met. Without them, I wouldn’t have been able to remain positive and hopeful through my diagnosis and treatment with all the unexpected news and complications that I had along the way. I also believe that without God’s grace, Karson and I wouldn’t be here and healthy today. I didn’t grow up in church and I don’t come from a very religious family. It took being diagnosed with cancer to bring me to my knees and bring me closer to God. It is hard to have faith when you are in the middle of the struggle and easy to wonder why God allows bad things to happen to good people. God didn’t promise us that we wouldn’t go through hard times, but He did promise that he would never leave us (some of my favorite verses – Isaiah 43:2 and Joshua 1:9). I was saved during my cancer treatment and have since found a wonderful church family and my faith is stronger than ever.

I am hoping to celebrate two years NED at the end of January. I have found that just because someone is free of cancer doesn’t mean that they are cured of cancer. Some people think that once you get the “all clear” things can go back to normal and you can move on with your life, but cancer forever changes every part of your being – your heart, your soul, your mind, your body. For many cancer survivors, there are everlasting physical effects from treatment, and the worry and anxiety of recurrence is always there in the back of your mind. You become so much more aware of your body, and every time something feels “off”, every pain that you feel, every twinge that you have, you cannot help but wonder if it is back. I think with time it will get easier, but the fear is something I think I will live with for the rest of my life.

I believe my purpose is to be a light for others facing cervical cancer, especially those facing it while pregnant. I want to continue to share my testimony and use my survivorship to provide hope, encouragement, and awareness. Whether you are newly diagnosed, going through treatment, dealing with a recurrence, or have no evidence of disease, please know that you are not alone. You have support with Cervivor and there is hope! You are brave, strong, beautiful, and resilient. Don’t give up! 

Brooke Wyse is a stage IB1 cervical cancer survivor and member of the Cervivor community. She lives in northeast Indiana with her husband and their three children, ages 2, 7, and 17. In addition to her efforts to spread awareness and end the stigma and shame of HPV and cervical cancer, Brooke is also passionate about mental health and addiction recovery and works as a manager of DCS services at a community mental health center. In her spare time, Brooke enjoys spending time with her family, reading, crafting, and roller skating.

The Power of Community

Every January, our community commits to bringing their global voices together in unison to talk about and bring awareness to cervical cancer and what it means to be a Cervivor.

Cervivor is a movement and a community. A community of people who find themselves holding on together because of the most life-shattering circumstance possible — a cervical cancer diagnosis.

As we say so often, we are in a club that no one wants to be in but having found each other brings us hope, support, and a platform to bring the visibility needed for cervical cancer prevention and awareness.

We come from everywhere. Urban cities, rural communities, countries across the globe, suburbs, and everywhere in between. Our diagnosis, treatment plans, and the way we move within our cancer is different for each of us yet when we arrive at Cervivor we realize we have a collective voice that is unstoppable.

Maybe you took that first step and shared your cervical cancer story. You typed out the nitty gritty of being diagnosed with a cancer that is rarely talked about and far too often stigmatized. And then you went on to read the stories of other women, some so similar that you immediately felt connected. That’s where it begins, this community of Cervivors.

These are your words, our collective voice, and this is what being a part of the Cervivor community means to you.

THANK YOU CERVIVOR TEAM @iamcervivor for your eyes to see, your ears to listen, and your hearts to heal. Let’s keep spreading awareness and support our fellow CERVIVORS who need us the most! ~ Arlene

This came just in time to accompany to my first chemo (this time around) tomorrow. Bring on healing and killing cancer with strength. ~ Laura W

I just got the sweetest note in the mail. Totally lifted me up. Love all my Cervivor sisters! And you’re right, with having all of you in my corner, I’ve totally got this! This is just a small bump in the road, but onwards and upwards! ~ Tammy

I just came home from my nephrostomy tube exchange to this amazing gesture that brought tears to my eyes. Team Cervivor you all are amazing, your support and kindness goes beyond anyone’s expectations and I am eternally grateful to be part of this group. Thank you! ~ Carmen

Today I’m very grateful for this beautiful card! Words can’t describe how thankful I am for finding out about this group  I wish I could have found it earlier! ~ Alexia

Thank you, Team Cervivor, for making a rough week a little better today! I’ve been down with the flu all week, and solo parenting on top of it. This was such a sweet delivery today. ~ Anne Z

So much love! Thank you, Cervivor, for always being there! ~ Joanna

Team Cervivor is truly the best; sitting here crying… thank you. People don’t understand the milestone this means… but it is so wonderful to be a part of this group who really do get the relief we have for making it to this one-year mark! Thank you for all your hard work behind the scenes and for us! ~ Victoria

Thank you Cervivor for giving me this opportunity to be among this great and strong team. ~ Milicent 

Thank you, Team Cervivor for the birthday card. I have been feeling down because I was a little bit under the weather but this card made my day. You guys are awesome and thank you to everyone in this group for making this community wonderful. ~ Anna

I came home yesterday to goodies and a nice book after a trip with my mom to the oncologist. I felt really down that I couldn’t do as much as I wanted to during last month and I was hard on myself, so when I received this from CERVIVOR, I was happy for the uplifting and encouragement. Cervivor is amazing for all that they do to assist all of us in being empowered and also caring for ourselves. ~ Kyana 

We are Cervivor. You make this a community by uplifting each other with grace and compassion. You share the difficulties cervical cancer can bring yet you always make sure to check in with each other. Thank you for being here, for sharing your stories, and making this a safe place for all.

Not yet a part of the Cervivor community? Join our Facebook group I’m A Cervivor!, Cervivor Español, or Cervivor Noir. Do you identify as Asian or Pacific Islander? A private group will be coming soon. To be in the know, send us an email at [email protected].

Do you have a cervical cancer story to share? Visit cervivor.org/stories and share yours today. 

Remembering Jodi

It is with our deepest sympathy we announce the passing of our dear community member, Jodi Madsen.

After being connected through our monthly virtual support group, Creating Connections, Jodi felt she had found the community she had been seeking. She was a wordsmith and gifted us with several blog posts to share her deeply personal connection to cervical cancer.

Jodi had what we call the “Cervivor Spark” about her. She took her diagnosis and turned her voice up in a way that others would take notice and understand how we’re more than a cervical cancer diagnosis. We’re daughters, sisters, mothers, aunties, best friends, coworkers and so much more.

She utilized her social media platforms to create informative reels which earned her the Brittany Wagner Social Media Advocacy Award from Team Cervivor. Jodi would later get recognized by a global pharmaceutical company to share her experience and make an even bigger impact.

She was such a bright and supportive light in our community attending one Creating Connections after another – always with the biggest smile on her face and an occasional tear or two from seeing the impact of sharing our stories throughout the year.

She shared, “Getting to listen to my friends brought in a brightness I needed so deeply in my soul.”

Our thoughts and prayers are with Jodi’s two sons, her husband, family and friends, and our entire Cervivor community. We know how much each of you meant to her.

Join us in remembering Jodi.

Read Jodi’s Cervivor story and from her personal blog “Mama is Healing.”

A direct link to her obituary can be found here.

Ten Things I’ve Learned in Ten Years of My Weight Loss Journey

As someone who lost over 100 pounds, (113 pounds to be exact), people often focus on my physical transformation.

However, the physical transformation, which you can see in the before and after pictures, only shows a glimpse of what the journey is all about.  

I am most proud of the discipline, determination, patience, consistency, and focus I have used through the years – to give me the energy, the joy, and the freedom I get healthier.  

I am not going to lie and tell you that this journey has been easy.  It has NOT been easy by any means.  People often ask what was easier, me beating my cancer diagnosis or me losing 113 pounds naturally?

My answer is… nothing worthwhile is easy! They were both challenging. You cannot compare both journeys. They come with different challenges, which I can say were hard to overcome. Nevertheless, here I am on the other side.  

For those who are not too familiar with my story, just let me give you a small synopsis. I was diagnosed with stage IIB cervical cancer in 2008, three months after I had retired from the New York City Police Department.  

I went through 35 rounds of external radiation, seven treatments of chemotherapy, and two treatments of brachytherapy (internal radiation). In May of 2009, I had no evidence of disease.

As cancer patients know, being cancer free is not the end of our story. Many people think that we can continue with our lives and we can pick up where we left off. That is far from the truth. I consider myself one of the lucky ones because I do not have too many secondary effects from treatments compare to others that have gone through this. So many others have lost their lives too.

I dealt with depression after treatments, and found comfort in food. This took me to tip the scale at 240 pounds. I am 5’3”, so this amount of weight made me morbidly obese according to the weight charts.  

Unfortunately, this situation brought consequence, and I became sick again. Diagnosed with type 2 diabetes, high cholesterol, and high blood pressure. I had to take five different medications to control these illnesses. I really was sabotaging my second shot at life, and I was not realizing it. 

This realization clicked when my medications stopped working because I was not helping by changing my lifestyle. My doctor gave me a reality check – either I change my lifestyle or the next step was to start injecting the insulin to control my blood sugar levels.  

I needed to do some work, no question about it. I did not want to go to the stage of injecting insulin if it was in my power to turn it around.

At this time, I made the determination that no matter how many times I will fall, I was going to get up and continue the mission. It was not as if I did not try before, I had, but this time my WHY was bigger than my prior excuses.

In 2012, fourteen months later, I had lost 113 pounds, reversing all my illnesses, and taking me off all prescribed medications.  

Perhaps I make it sound easy, and some people even say that I make it look easy.  I can honestly tell you “IT IS NOT.”  

The following are ten things I have learned throughout these past ten years. Not necessarily in this order.  

1.  The journey is NOT linear – By no means is it a straight line. There will be ups and downs, failures and successes. You need to be patient because results are not going to come overnight.

2.  Discipline yields success – I am not talking about restrictions. I am talking about being consistent, planning, and taking daily actions. Be disciplined about these three things.

3.  Losing weight is like watching a clock – When you are doing something you do not want to do, and the more you watch the clock, the slower it seems to move. However, when you are having a good time and not worry about the clock, time seems to fly by. Losing weight is the same. The more you focus on the scale the slower it feels like it is moving. Instead, focus on being consistent and remember why you are doing it; you will be surprised how the results start to show.

4.  Be kind to yourself – There are going to be some days that you will be unhappy with your choices. It happens, believe me, but it is okay. Do not throw it all away. One bad day does not dictate the days to come.  

5.  Block the “unnecessary noise” – This is what I call the ‘opinions of critics’. Many will have opinions, recommendations, etc. and it’s okay, let them have them. You might hear things like “you do not need to lose weight”, “you are getting too skinny,” “do this diet instead”, “do this exercise”, etc. Surround yourself with like-minded people. Your own community. Just remind yourself that this is your journey and you are the one who is making the educated choices. Go on your own pace. This is your power – exercise it. 

6.  The scale is NOT your enemy – I know this topic is controversial. For many the scale is a scary thing, and not too friendly at times. It took me awhile but I have learned to treat the scale as a tool that gives me information on what is going on with my body. I do not attach myself to the number. The number tells me what I am doing wrong (not enough sleep, little hydration, nutrition not on point). Non-scale victories (NSV) are great, but I still believe you need to know that number to know what your healthy weight that you are comfortable with. A healthy weight looks different on everyone.  

7.  Age is just a number – It might sound like a cliché, but it’s coming from me. I am living proof of this cliché. I have managed to lose weight at ages 53, 60 and 63.  Often I hear things like, “I am too old to lose weight”, “I cannot move the way I used to”, etc. I was 53 years old when I naturally lost my original 113 pounds. I am an emotional eater and certain things trigger old habits; I needed to lose weight at the age of 60 and then again at 63 too. I am 63 years old and I am active, and I have a healthy weight for my body. I teach fitness classes and I have plenty of energy.

8.  Make Health Your Priority – By now, you have gathered that my journey to where I am now has not been perfect. I have fallen big, but I do not give up or say, “It is just meant to be this way”.  No – I refused to accept this. I am committed to making my health a priority. I know that nothing in this world is guaranteed, but being as healthy as possible gives me the best odds to have the quality of life that I deserve.   

9.  Alignment of Mind, Body and Spirit – I call them my three pillars. We need to work on all three simultaneously. The connection between the three of them is when we are the most powerful. We cannot work on only one because the other two will suffer. Some people might think this is pseudo-science, or perhaps woo-woo practice and that’s okay but do not knock it until you actually give it a good try. The main concept behind the mind-body-spirit connection is that these things combined give us identity, determine our health, and make us who we are.

10. The Evolution – I have witnessed my own evolution. I have evolved by my learnings, and my experiences. I know that the choices are mine. Taking full responsibility for my life, my thoughts, my attitude and my daily actions. It is not an easy task; it is something we need to work on daily. There is no finish line. There is no final goal. It is part of who you are and who you want to be.  

Patti is a Cervivor Ambassador and Cervivor’s Wellness Instructor who manages our Survivor Slimdown program. She is a retired NYPD police officer and a 13 year cervical cancer survivor. She resides in NYC with her husband of 23 years where she’s a Group Fitness Instructor and a Health Advocate.

Our Favorite Things This Giving Season

Cervivor would like to thank each and every one of our generous donors who sent a gift of support during Giving Tuesday! Your generosity and kindness continue to make this organization thrive. 

If you missed us, no worries! The giving season is still upon us and there are plenty of ways you can support our community outreach programming:

Donate to our NEW Cervivor Book Club

That’s right! We’re starting a book club and we hope that you’ll help support this initiative by donating the books from our Amazon Wish List here.

Do you have a gently used copy of the books on our list that’s taking up space? Email us to find out how to donate to our programming!

Sponsor a Limited Edition Self-Care Box

We have a small quantity of boxes that were carefully curated by Team Cervivor available through the Cervivor Shop. They feature products created by cervical cancer survivors in our community. These boxes were specifically designed for cervical cancer patients and survivors and will make the perfect gift for the holidays! Interested in sponsoring a box? Send us an email at [email protected]!

Join our Virtual Pap Rally & Run 

It’s back! The Virtual Pap Rally & Run will be starting January 1st and will go through January 29th in honor of Cervivor’s 18th birthday. To join, create a team, join a team, or become a team of one. Create a goal that you choose; just make sure it has a version of the number 18 in it. Post your pictures on our Facebook event page while putting your personal goal into action or tag us on your social media platforms – wearing your teal and white is a bonus. To learn more about the event or create or join your own team, visit our race page here. Download and share the event flyer with your friends, family, cancer centers, gyms, churches, etc.

Become a Monthly Donor

Replace a coffee once a month with a $5 donation (or more). Your donation will go towards grassroots organizing and program support by providing funds for printing, postage, and support bag materials to help cervical cancer patients and survivors to connect in their local communities so no one has to feel alone. 

This year, shop, donate, and volunteer with purpose. Every gift that is presented to Cervivor directly impacts the community of cervical cancer patients, survivors, and thrivers.

This is What We’re Thankful For

Team Cervivor has a lot to be thankful for this year! From an amazing Cervical Cancer Awareness Month in January to our Founder and Chief Visionary finding out she was becoming a mother through an exceptional gift to representing Cervivor at the World Cancer Congress in Switzerland to the opening remarks at the White House for the National Breast and Cervical Cancer Roundtables launch. There is too much to count.

Where our community continues to grow quickly, we’ve been able to spread our collective wings and soar higher toward our mission of ending cervical cancer -all while supporting the members of this amazing community. This season represents togetherness and gratitude and we want to share what’s in our hearts and how you have been the center of our thankfulness. 

“I am thankful for the relationships that have been formed from one of the hardest aspects of all of our lives. It warms my heart so much to see people in our community going through a hard time to still show up for others. It’s what makes our community extra special.” – Tamika Felder, Cervivor Founder & Chief Visionary

“I am beyond grateful to be able to connect with and serve so many incredible people in the Cervivor community. It truly makes my job so much bigger than I could have ever imagined it to be.” – Morgan Newman, Cervivor Community Engagement Liaison

“I am thankful for the dedication, hard work, and effort that so many within our community make towards our collective goals!” – Heather Banks, Cervivor Lead Advocacy Educator

“I am grateful that our Cervivor community is full of compassionate people, from all over the globe, who never hesitate to uplift one another and that many have chosen to make their survivorship a beacon for change.” – Carol Lacey, Lead Cervivor Ambassador

“I’m grateful to this community because we are people woven together. We lean on one another, learn from one another, celebrate together, and grieve together.” – Patti Murillo-Casa, Cervivor Wellness Instructor for Survivor Slimdown and Co-Lead for Cervivor Español

“I am grateful for our Cervivor Community. The fact that we share with each other cultivates our relationships and our passion in ending cervical cancer. Each one of us is cog in this intricate machine that is advocating for our health. This is what I find beautiful and makes me feel grateful: we are not alone, and with that fact we can accomplish our mission.” – Karla Chavez, Cervivor Español Co-Lead

“I am forever grateful for our Cervivor community. The support and understanding allowed me to know that I am not alone. The education and empowerment has allowed me to be an advocate for myself and many others.” – Karen North, Cervivor Community Administrator

“I am grateful that I have cervical cancer sisters that understand my journey, they understand my lows and frustrations because they have been there. At times, as a cancer survivor, you can feel alone because people don’t ‘get you’. With the Cervivor community, I know that I am surrounded by women that understand me.” – Kimberly Williams, Cervivor Community Administrator

All of you strengthen our resolve to keep doing the work of bringing cervical cancer out from the shadows. Thank you for being a community of light for so many. The world is listening and together our voice is strong and steadfast in its resilience. We are Cervivor and ending cervical cancer is within our reach.

Forever Grateful for Caregivers

Each November we celebrate those who we as cancer patients and survivors consider to be our heroes, our confidants, and our lifelines. They are the ones who continue to show up day in and day out, day after day to help us navigate the ups and downs of our complicated cancer world.

No one can walk through this alone, nor should they. We know all too well how it takes a village and then some. Being a caregiver isn’t just loving someone, it’s digging through your own fears, using all of your heart, and becoming the light for the both (or group) of you.

Our community shared the people in their lives who make things brighter and kinder, and who continue to be there for them in every way. On this special edition of Teal and White Tuesday, we are standing on our mountain tops shouting our gratitude and love to all our besties, our mothers, fathers, sisters, children, nieces, partners — every loved one who has held our hand, drove us to endless appointments, rallied meal trains, helped with childcare and never hesitated to be our Teal and White Tuesday cheerleaders. You are all amazing and so very appreciated!

My grandniece is my sunshine. ~ Patti

My best friend and husband Sota! This is the photo of when he made me laugh while I was struggling with radiation in the waiting room at the radiology clinic. He was there for every single appointment with me. ~ Anna

My brother Mario! He traveled from Mexico City to drive me to chemo appointments and take care of me afterward. He is the best nurse ever! ~ Gilma

My mom and sister were here with me a couple of days after my hysterectomy. They surprised me with their new shirts! ~ Livvy

My tribe have been my biggest supporters (along with my family of course!) ~ Kimberly W.

My husband has been so strong for me even though he was suffering too. ~ Alexia

This is my best friend Erica, she calls me her platonic wifey. We’re going to be Golden Girls together. She delivered me to radiation appointments, brought me food, and entertained my teen throughout my treatments. ~ Laura

My hubby Richie. He always puts that smile, calmness, and sense of peace in this journey. Our daily: Laugh at each other and with one another! ~ Arlene

My brother Luis took care of everything from rides to another city for my treatments and surgeries, to taking me out for a burger (without my doctor’s permission!). He made me laugh and made sure I always felt the love. ~ Karla

My tribe… I couldn’t do this without my husband, family, and friends. ~ Jenn

Dave, Braylon, and Kiara. They are my world! ~ Tammy

I had a village too, but my main two people were my sister and my mom and to this day, they still are. They came to every single appointment and treatment. Three years on now and my sister does my dressings every week and both help me when fatigue still hits. I’d be lost without them. ~ Kim

My Mom! She came from Puerto Rico to be with me during my surgery and all my treatments. It was a blessing having her; she made sure I was eating well and resting. She lived all of this experience with me and it made us bond even more afterward. Words cannot describe the love I have for this woman. ~ Carmen

We thank our community for sharing such wonderful lights with us and we encourage you to continue to share your caregivers with us all year round. Send us a photo and a small blurb and we’ll highlight them!

Did you know we have a special shirt just for caregivers in our online shop? Check them out here.

HPV Cancer Survivors Take On Memphis

Cervivor and St. Jude partnered for an all-HPV cancer survivors school to train patient advocates representing anal, cervical, oropharyngeal, vaginal, and vulvar cancers.

The weekend kicked off with a welcome reception and special message from Founder and Chief Visionary, Tamika Felder. The evening was filled with conversation and an energizing music compilation from DJ Malone. (You better believe there was some dancing to be had – ehem, Jason).

Team Cervivor: Morgan Newman, Tamika Felder, & Heather Banks
Rooftop Welcome Reception
Dancing Jason

Saturday morning started bright and early with information-packed sessions ranging from learning the basics of HPV and cancer to finding your voice and expanding the survivor advocacy footprint.

We heard from Andrea Stubbs, MPA and Administrative Director of St. Jude’s HPV Cancer Prevention Program and the important work that St. Jude has been working on in the HPV cancer prevention space. Dr. Heather Brandt gave us the latest data on HPV, HPV cancers, and what advocates need to know.

Andrea Stubbs, St. Jude
Julia Neely, Andrea Stubbs, Duha Magzoub, & Dr. Heather Brandt of St. Jude
Graphic Facilitation Artist, Kat Gentner

Lead Cervivor Educator, Heather Banks and Tamika Felder led the attendees through how to make their survivorship count. Their session was followed by a patient panel moderated by oral cancer survivor, Jason Mendelsohn, and featuring anal cancer survivors, Lillian Kreppel and Calvin Nokes, as well as cervical cancer survivors, Karla Chavez and Kimberly Williams.

After lunch, Visibility Coach and Founder of the REP Network, Roshanda Pratt ignited the advocacy flame in helping the attendees identify their stories in just three words. Roshanda is known for her mantra of “Visibility is power” and she has helped us understand that “Transparency is the new currency” and that it is progress over perfection in our advocacy that matters most.

Tamika Felder, Cervivor Founder & Chief Visionary
Cervivor Lead Advocacy Educator, Heather Banks
Tamika Felder, Roshanda Pratt, & Dr. Heather Brandt

We heard from Dr. Vetta Sanders Thompson, an E. Desmond Lee Professor of Racial and Ethnic Diversity and Associate Dean for Equity, Diversity, and Inclusion at Washington University in St. Louis. She gave us a psychological, data driven presentation over addressing the common concerns about HPV vaccination with an interactive activity.

The day was rounded up with a presentation by Cervivor Community Engagement Liaison, Morgan Newman on how to expand the survivor footprint followed by a session of what’s next – leaving the attendees with a call-to-action. The attendees became graduates, receiving a certificate of completion and a celebratory reception including a live band at Beale Street Landing.

Survivor Panel Moderated By Jason Mendelsohn
Dr. Vetta Sanders Thompson
Morgan Newman, MSW

Cervivor, Inc. and St. Jude are incredibly honored to have hosted 30 HPV cancer survivors now turned patient advocates from across the nation (and a few international advocates too).

We invite you to join us on March 3, 2023 for International HPV Awareness Day to help spread awareness, screening, and prevention of HPV cancers. Mark your calendars now!

Cervivor, Inc. would like to take this moment to thank St. Jude for becoming an impactful partner in furthering the mission to end HPV cancers.

PRESS RELEASE: Cervivor Founder and Chief Visionary, Tamika Felder Invited to Share Opening Remarks for First Lady, Dr. Jill Biden and the American Cancer Society’s Launch of The National Breast and Cervical Cancer Roundtables

WASHINGTON, D.C. – In February 2022, the American Cancer Society announced they would be launching two national roundtables: one for cervical cancer and the other for breast cancer. This was a response to President Biden’s call to action in reducing cancer incidence and death rates faster. This initiative is to bring together leading organizations and experts in the cervical and breast cancer space to drive progress and improve the lives of cancer patients, as well as their families.

The objectives of the national roundtables align with the President’s Cancer Panel’s report Closing Gaps in Cancer Screening: Connecting People, Communities, and Systems to Improve Equity and Access. 

The report addresses the need to:

  • Improve and Align Communication: Develop effective communications about cancer screening that reach all populations; and expand and strengthen National Cancer Roundtables that include a focus on cancer screening.
  • Facilitate Equitable Access: Barriers contribute to lower rates of cancer screening initiation and the recommended follow-up observed among many populations in the United States; there is a need to provide and sustainably fund community-oriented outreach and support services to promote appropriate screening and follow-up care plus increase access to self-sampling for cancer screening.
  • Strengthen Workforce Collaborations: Team-based care has the potential to improve implementation of cancer screening but in order to accomplish this, supportive policies and a commitment to team-based care approaches are needed which include the empowerment of healthcare team members to support screening plus having the opportunity for training and residency programs; and expanding access to genetic testing and counseling for cancer risk assessments to catch cancer early.
  • Create effective health IT: Providers and patients alike are faced with more information than they can process in a reasonable amount of time. Health information technology (IT) has potential to help providers, patients, and healthcare systems quickly access and effectively use clinical knowledge and patient-specific data.

Cervivor Founder and Chief Visionary, Tamika Felder was invited to speak on behalf of cervical cancer patient advocates and their families to increase awareness, impact change, and work collectively towards eliminating cervical cancer. Tamika and Cervivor, Inc. have been long-standing influencers on the panel since 2003, helping to provide vision as well as patient stories. She shares, “For me it is personal. My legacy won’t be the lives that I bring into this world but the lives I will save.”

First Lady Jill Biden attends an American Cancer Society Roundtable event, Monday, October 24, 2022, in the State Dining Room of the White House. (Official White House Photo by Adam Schultz)

Recording artist and cancer prevention advocate, Mary J. Blige shared the personal impact cancer has had on her family in recent years and why she has dedicated so much time to awareness. She phrases a key message, “I’ve dedicated time to making people understand their health is their wealth and urging them to make it a priority.”

American Cancer Society CEO, Dr. Karen Knudsen states, “We at the American Cancer Society represent all 1.9 million Americans that hear each year that they will have cancer and we are absolutely resonating with the goal of the Cancer Moonshot to end cancer as we know it.”

Dr. Karen Knudsen, Tamika Felder, First Lady Dr. Jill Biden, and Mary J. Blige

Dr. Knudsen also brings to light that breast cancer still remains to be the second leading cause of cancer death for women in this country and number one for Black and Latina women. 14,000+ women are diagnosed with cervical cancer and over 4,000 will die from the disease. Black and Latina women are again, impacted at nearly twice the rate as their Caucasian peers.

First Lady, Dr. Biden emphasizes there should be no woman left behind. There is an absolute need for collaborative efforts including the patient advocate voice because this impacts us all. The focus is to put patients and their families at the center of their cancer – from diagnosis to survivorship and we are rewriting the narrative of cancer.

“We don’t have to be afraid of cancer anymore!” 

First Lady Jill Biden bids farewell to singer Mary J. Blige, American Cancer Society CEO Dr. Karen Knudsen and cancer survivor Tamika Felder after an American Cancer Society Roundtable event, Monday, October 24, 2022, in the Red Room of the White House. (Official White House Photo by Erin Scott)

We stand with the First Lady, the American Cancer Society, and so many more leading organizations. We are committed to this mission as we are reminded of the daily impact in our community of a cervical cancer diagnosis, the treatment and difficulties in survivorship, and of those lives that have been lost from a preventable disease.  

Watch the full livestream recording here.

Pushing Beyond Hispanic Heritage Month

Patti’s Mother, Tia (who would have been 94 on 10/22/22), & Abuelita

I was born in the US in the late 1950s. Both of my parents were born in Nicaragua, Central America. Even though I was born in the US, my grandparents raised me in Nicaragua until the age of eight. At that time, I returned to live with my parents in New York City. Making my first language Spanish. Growing up, we never spoke about menstruation, sex, or anything related to reproductive health at home. It was taboo. Schools did not teach sex education in those days either. I learned as I went along, hearing bits and pieces from my friends. 

Even though I am educated and well-rounded, sex education was a subject that I did not know much about. I only knew the basics. You might be thinking this is sad – Perhaps– but this is the way Latino parents have raised their kids for many generations. I wish someone had taught me about bodily development, and the broad variety of topics related to sex and sexuality, to have gained the skills needed to manage my sexual health.

Even today, in Latino households we do not have parents talking enough about sex education with their children.  There has been improvement, but there is a lot more we can do.

Unfortunately, cervical cancer in some cultures, including the Hispanic culture, is perceived to be a cancer of sexually promiscuous people. I believe this causes great stigma and shame. We can change this perception by first knowing the facts of cervical cancer, and educating others and ourselves. Educating the next generation properly is important. Teaching them about all the risks that exist, besides getting pregnant at an early age.

At the time of my diagnosis, I felt ashamed of having this type of cancer. I did not know too much about it nor did I know how I got cervical cancer.  I had to educate myself so I could properly explain it to my family. My shame resilience came with time. You need to remember that a particular belief passed from generation to generation is hard to change and hard to let go.

Patti Murillo-Casa, Dr. Jason Wright, & Tamika Felder at a Pap Rally & Run by Cervivor, Inc.

Today, I am an advocate and an educator on cervical cancer. I educate women, especially Latinas, on the tools we have to prevent this type of cancer. Latinas are the demographic most diagnosed with cervical cancer. The two main reasons why are a lack of knowledge about the disease, and a lack of screening. However, we can take steps to change the fate of many.

Over the past 10 years, I have teamed up with my oncologist to provide free cervical cancer screenings for women in NYC who may not have medical insurance.

I was declared cancer free in 2009, and I use to visit my oncologist every three months for check-ups after that. In 2010 when I became an advocate, I use to come in and tell my doctor about all the work and advocacy I was doing in NYC.  

We developed an awesome patient/doctor relationship; he saw my enthusiasm and passion for the mission of eliminating cervical cancer. One day, during one of those visits, he said, “Patti I want to help you and the Cervivor organization with your mission. Let’s offer FREE screenings to uninsured women.” I looked at him, smiled, and the only thing that came out of my mouth was, “Are you serious?” He smiled back and said, “Yes, let’s make it happen.” 

However, before we set up a date, he needed to put everything together. He needed to make sure that the lab was on the same page to not charge patients for processing the Pap/HPV test.  He also needed to gather medical staff to come in on their day off, and donate their time.  

This was amazing. I could not have asked for a better offer. On May 19, 2012, we held our first FREE screening event. It was a huge success. We have been offering this program annually since that first day and this year marks our 10-year anniversary.

We have also collaborated with other departments within the hospital, and for the past four years, in addition to cervical cancer screenings, we have offered FREE mammograms and FREE colon cancer screenings for uninsured men and women in the community.  

Dr. Jason Wright and his staff at the Division of Gynecologic Oncology at Columbia University/NY Presbyterian Hospital are committed to this mission. Dr. Wright has always been supportive to the Cervivor organization and my advocacy work. I am so thankful to him and his staff for putting these events together. Because of them, hundreds of women have been screened throughout the years, and many lives have been saved.

Patient advocates and their oncologists can create a partnership together to reach more women in the community, and offer education, screenings, support, or mentorship to women that need these services.  


Patti Murillo-Casa, Cervivor Wellness Instructor

Cervivor is grateful to Patti for bringing her passion and talents for wellness and cancer prevention to our mission. She is a vital part of what makes us #CervivorStrong. Thank you, Patti!

A Turn of Events

Gilma Pereda, Cervical Cancer Patient

“You have a metastasis.”

These are the words that every cancer survivor fears – not only because they mean the cancer is back, but because it has spread to other parts of the body, which has the potential to make treatment a highly complex endeavor.

I was a couple of months shy of the 5-year mark of living cancer free when I received the scary news. And because life is funny that way, it happened right on Halloween, my favorite holiday. Since I received instructions to go to the hospital immediately for an emergency neck neurosurgery, I donned a realistic “ER Patient” costume that day, a neck brace and all.

How did I get there, you might ask? I went to all my 3-month, 6-month, and 12-month checkups. I followed all the post-treatment instructions carefully, from quitting alcohol and sugar to using the dilator mostly every night. I exercised regularly and practiced meditation. My last pap in October 2020 was clear.

It all started with acute pain in my right shoulder, which I thought was work-related tendinitis (I’m a graphic designer, and I use a graphic tablet daily). The pain traveled to my back, neck, and left shoulder – it felt like my joints were on fire. I started having high fevers and chills and woke up every night drenched in sweat.

I went to see my primary doctor, who diagnosed pneumonia. I finished the 10-day antibiotic treatment, but the pain continued. He then ordered special labs and scans. The inflammation markers were up high, and the scans revealed a large mass in the right lung. A more specialized CT scan showed many lytic lesions (bone cancer) all over my body, the more significant ones in a couple of cervicals, right next to the spinal cord. The delicate nature of those lesions was what prompted the surgery.

A lot happened after my Halloween adventure: I had a lung biopsy, a blood transfusion (due to dangerously low hemoglobin levels), and a few nightly trips to the ER that introduced me to opioids and the glory of morphine shots. But that way of dealing with physical pain destroyed my gastrointestinal system, so I ended up in the hospital for what felt like an eternity. Once there, I was on suicidal watch for a few days. But after my first chemo treatment, my oncologist was hopeful – my age qualified me to get a new treatment after chemo. Moreover, there was a good possibility that I could get into remission in a couple of years.

The doctors sent the lung biopsy to quite a few places for research. The results indicated it was cervical cancer. Again. I must confess I found it amusing that I had cervical cancer in my cervicals.

The journey has not been easy. The first thing I did when I was able to get out of my head was to contact a few of my Cervivor sisters. I’ve received greeting cards, care packages, soft hoodies and beanies that I wear all the time (Monterey is chilly!), and loving support, even from sisters who don’t even know me! I’m forever grateful to this wonderful community of strong women who encourage me to keep going.

I’m not officially cancer free yet, but I no longer experience the excruciating pain that comes with bone cancer. After eight rounds of chemo, most of my lesions are getting healed, and the lung tumor is shrinking significantly. As a result, I went from being bedridden to walking with a cane to going on light hikes and walks. I love my new eyelashes, eyebrows, and pixie haircut. In addition, I’m receiving immunotherapy every three weeks, so I now have the energy to go back to school, keep up with my work as a freelance designer, and enjoy quality time with my family and friends.

As October is officially here, I’m starting to plan my Halloween costume. This year I refuse to wear a scary one – I want something inspiring and hopeful. Maybe I could be a “Cervivor Advocate.” It’s payback time.

Gilma Pereda is a metastatic and recurrent cervical cancer patient located in sunny California. She is a graphic designer and translator who wants to lend her skills to a good cause – an effort to educate women and men about HPV and what they can do to prevent it, to promote vaccines for children, and to motivate women that are living with cancer today to feel empowered.

Supporting Above-the-Belt Cancer

September gave us an opportunity to bring more awareness to multiple gynecologic cancers that affect over 604,000 people globally every year. As below-the-belt cancer activists, Cervivor knows how important it is to talk about cancers that have less visibility than others. The more we share, the more awareness we raise.

October is Breast Cancer Awareness Month (BCAM) and there was a time when no one was talking about cancer, especially ‘boob’ cancer. It was organizations like Susan G. Komen and the National Breast Cancer Foundation that paved the way. Yet, despite the sea of October pink, an estimated 685,000 people globally died from breast cancer in 2020. Inclusive healthcare and continued awareness is still needed to reduce this number.

Here’s where both above- and below-the-belt cancers are similar: They are all destructive and take far too much from us. Many of us struggle to accept our changed bodies; the physical and mental toll it takes to rediscover ourselves. We are all in the ‘cancer club’ regardless of what color our awareness ribbon reflects and conversations help break down taboos and stigmas.

This month we are sporting pink and supporting our fellow breast cancer survivors and patients all while waving our teal & white. The Cervivor community has members who are both breast and cervical cancer survivors – like Karen and Laura, who make sure to share their stories, especially in October and again in January for Cervical Cancer Awareness Month (CCAM).

We also support our community members – like Kadiana, who knew she was at risk for the BRCA-1 gene after losing her mother to ovarian cancer. We have a commitment to support inclusive cancer prevention efforts because by doing so, we elevate those less discussed cancers like cervical. We will call upon our cancer community friends and partners come January to spread our message of cervical cancer prevention, so let’s give a voice to breast cancer awareness and prevention this month!

Cervivor School Nashville Was Outstanding

The 13th patient advocacy training known as Cervivor School was held in Music City U.S.A. or better known as Nashville, Tennessee. This was an intimate group, made up of first-time and returning attendees and we hosted some of the most dynamic speakers to educate and empower our 2022 class.

Like any other Cervivor School, we kicked it off with a special Welcome Reception where attendees were able to mingle and get to know each other right off the bat. We heard inspiring words from Heather Banks, Lead Advocacy Educator, and Tamika Felder, Cervivor Founder and Chief Visionary.

Tamika and Heather kicked off the first day with a dedication to and moment of silence for those who have died from their cervical cancer and are no longer able to share their stories. It was a powerful reminder that our mission to end cervical cancer is not over and there is still much work to do. Tamika also shared how putting a human face to cervical cancer is a critical part of our cause and why we should share our stories.

Later we heard from Community Engagement Liaison, Morgan Newman, Lead Cervivor Ambassador, Carol Lacey, and Cervivor Ambassadors, Karla Chavez and Karen North. They shared what it means to be a patient advocate, how they fulfill the role to make an impact, and what advice they have for others in mastering survivorship and advocacy. Then we heard from Michelle Whitlock, author of  “How I Lost My Uterus and Found My Voice,” and how she decided to use her voice after cervical cancer followed by empowerment groups and a session on life during and after treatment with Heather.

Cervivor Ambassadors Carol Lacey and Morgan Newman led an interactive session, Healing Through Writing, in honor of Erica Frazier Stum who thought of and led the session in the years prior. After listening and sharing each others’ creative writing, we ended the day by creating an individualized advocacy action plan to be put in place after leaving Cervivor School.

Day two is our Medical Day where we get the latest and most advanced information on the human papillomavirus (HPV), the HPV vaccine, and cervical cancer screening. We started the day by understanding cervical cancer screening guidelines, the impact of the patient perspective, and how important it is in our advocacy work. It was a great reminder from Dr. Lia Bos that our stories are powerful and when we partner our voices with physicians and clinicians in the field, we leverage our impact even more. We also heard from Andrea Stubbs, MPA, representing our community partner, St. Jude, and their HPV Cancer Prevention Program. She shared her work and provided ideas and information about supporting HPV vaccination efforts so we can powerfully advocate for vaccination as prevention!

We were inspired by Catherine Tyler as she led us through a discussion on living with and through significant illness and treatment while staying true to our aspirations and our authentic selves. And Tamika and Heather helped our attendees practice potential advocacy scenarios, establish advocacy norms, and finalize our advocacy action plans to put in place after leaving Cervivor School.

Lastly, we rounded out the Cervivor School weekend with a graduation ceremony for our attendees and Tamika awarded not one but two Cervivor Champions for 2022!

Jenn Myers
Kimberly Williams

Jenn Myers and Kimberly Williams have both embodied what a Cervivor Champion is.

Jenn is a metastatic and recurrent cervical cancer patient currently undergoing treatment and is still leading and advocating despite it all and Kimberly continuously shares the importance of vaccination and cancer screening when it comes to HPV, cervical cancer, and communities of color.

Our newest Cervivor School graduates are empowered, ready to share their stories, and eager to connect with leaders in their local communities. Team Cervivor cannot wait to see their advocacy in action and how they decide to make their survivorship count!

We would like to extend our gratitude to our Cervivor School Sponsors Hologic, Seagen, Genmab, and Genentech.

Hispanic Heritage Month: Beyond the Taboo

Karla Chavez, Cervivor Ambassador & 2022 Cervivor Champion Award Recipient

In the months of September and October, we are celebrating our Hispanic heritage.

History supports our struggle and power to overcome difficulties. We are brave, passionate, and colorful people. We also come from many beliefs and cultures, some of which can be obstacles.

It is a reality that many Latinas die from a disease that can be prevented. The lack of education, the lack of specialization of our doctors, and the HPV taboo are our challenges to overcome in order to win the war against cervical cancer and other cancers caused by the Human Papillomavirus.

I was 34 years old when I was diagnosed and in a country where our sex education is given in science and biology classes, but discussed little outside the parameters of our classrooms. Being able to accept and share that my cancer was caused by HPV gave me freedom. I talked about it with my family, and I remember having the feeling of, “What are they going to think of me?“ They really didn’t care. Their only concern was my health.

Being diagnosed with a cancer caused by HPV carries with it a taboo in my culture. We often do not discuss this with anyone because we do not want them to judge us, much less reject us. Many times we struggle alone with feeling guilty. This stigma must be overcome. We must trust that we will find support, in our family, in our friends, and/or in faith. The way to overcome this issue is to talk about it without fear, so that the next time we hear about cervical cancer, it’s because it is being prevented. We want our communities getting vaccinated and that we don’t wait ages for our doctor appointments.

A doctor told me, “the vast majority of us will have an HPV infection at some point, what we need is to remove the stigma behind those three letters and attack it.” 

This resonated with me. It made me feel that even though I didn’t know much about what was happening to me, it wasn’t my fault. It is something that I had to go through, and I must overcome it.

Karla with her Madre & Abuela

Once I took away the power that guilt had over me, I began to fight. I have had the joy of having my family as my support team. We have fought with a lot of faith and love. Which is one of the characteristics of our Hispanic culture, keeping us together as a family no matter the situation.

I am also sure that my doctors were the answer to my prayers in my moments of fear. I received 8 chemotherapies and 35 internal radiation treatments. After a total hysterectomy and colostomy surgery, I have made it my mission to never shut up about what I went through. Because to someone out there, something in my story will resonate and they will act. Either getting vaccinated, scheduling their cancer screenings, or vaccinating their children.

I’m still here to celebrate life and the month of Hispanic heritage. I’m still here to tell you that cervical cancer can be prevented. That there is a vaccine that can save the lives of hundreds of thousands. I’m still here to talk to everyone about the vaccine and prevention.

When I was diagnosed, I wanted to fight and win. Now that I celebrate 5 years without evidence of disease, I want to fight and overcome the stigma, the lack of education about HPV, and its relationship with various types of cancer.

After attending Cervivor School I learned how to share my story, how to speak up, and be the voice that can resonate with someone else.

I have had the opportunity to participate in talks at universities, high schools, religious groups in my country, and in workplace meetings, and always that I can to each person that wants to listen.

I want everyone to get the HPV vaccine, to make their cancer screening appointments so that together we can dream of a Honduras and a world free of cervical cancer.

Fellow cervical cancer survivors/patients, I leave you with a mission: Share your story, because your story will resonate with someone.

Visit Cervivor.org to share your story with an easy-to-follow template!

Karla Chavez is from Honduras and she is a civil engineer and amigurumi enthusiast. Karla is a 5-year cervical and thyroid cancer survivor and a proud ostomate. She is a Cervivor Ambassador, a 2019 Cervivor School graduate, a Cervivor Champion Award recipient, and is a key support to our growing Cervivor Espanol community.

The Gift of Creating Connections

My name is Jodi Madsen. I am an active cervical cancer patient, in both treatment and spreading awareness about the importance of women’s health and HPV. I was diagnosed with stage 3C2R adenosquamous cell carcinoma of the cervix in February of 2021. I live in North Dakota with my husband, who serves in the United States Air Force, and our two little boys. North Dakota isn’t really your prime real estate for any medical specialty, so if you’re going to go looking for gynecologic anything, you’d have the same amount of luck finding oceanfront property outside their practice. I travel ten hours to Omaha, NE for every single appointment since there are no qualified persons within a reasonable range. My insurance had some input on that decision and actually was kind enough to make it for me! While I love my care institute, I am sad to miss out on living closer to women in similar situations and being able to participate in support groups. 

From the beginning of a cancer diagnosis, there is one word that has always lingered close by. Lonely. I think the bottom line of that comes down to knowing I can’t convey my feelings correctly to those I love and that is incredibly isolating and frustrating. There are so many things that instantly change when you become the patient that you don’t even realize. In an effort to de-alienate myself I started a blog. I started it for many reasons, the biggest was to hold the connection with my friends and family, as well as nurture new connections and share with women unfortunate to be met with the same diagnosis should they run across it in the future. That blog gave me a spark and was always something for me to do to pull me out of the gallows. Believe it or not, even the most annoyingly chipper of us end up down there quite often. I haven’t written much lately and the “Oscar” radiating off me is uncanny. 

One day last fall, I was scrolling Facebook in a large cervical cancer support group, and I saw someone asking for help with writing blogs for CCAM (Cervical Cancer Awareness Month) for a smaller organization. Nervously, I mentioned that I have been writing blogs about my experience. I liked the organization’s page, joined the private group, and began freaking out. Who do I think I am, thinking I can use this voice? Until I saw the community I just stepped into. Each question is answered with care and love no matter the nature. Every single woman is encouraged to share their stories. Not a writer? They have prompts ready! I was so happy seeing the patient being the center light here and what looked like genuine friendships showing up all over the place. What is this wonderful island offering me so much hope after less than ten minutes of interaction?! Cervivor! 

Not long after these first few interactions, a day came along with an event called, Creating Connections. It was a Zoom meet-up with a speaker and two Cervivor Ambassadors acting as moderators to keep the conversation loosely based on parenting with cervical cancer. It was my first interaction of the sort that was like a support group and it was wonderful! There were about 15 women present and after we took turns giving small introductions to our stories, we were able to listen to some wonderful pointers on how to explain things to our little kiddos regarding treatment, medications, time away from home, and other key confusing factors for them. 

That night I met a pal, Caroline. Caroline stood out because she has little children too, and lives near where my husband is from. Just like that, with a two-second snippet of her introduction, I knew I had found a person to meet in real life when I am in that area. Because I joined that online meet-up last October, I now have a friend to show me a new coffee shop and get away from the family for a bit when I join my in-laws for a week. How cool! Let’s add this to the list of incredible feelings I get from being a part of the Cervivor community. The power I feel that I have gained from the support of both the Cervivor organization and the Cervivors themselves is insurmountable! Talk about a boost!

As time has passed and treatments have come and gone, I have become less active in both my own blog and posting in support of Cervivor. Many reasons have contributed to my absence, but because of the family environment, I can always hop back in like I never left. Much like I did a few weeks ago when attending another Creating Connections. I was on the road, so I had to be muted for most of it, but getting to listen to my friends brought in a brightness I needed so deeply in my soul. What I didn’t know I was needing, as a cherry on top, was the number of attendees waiting to introduce themselves to the rest of us. Several of the Creating Connections meet-ups I have been to have been about the same 12-20 people in attendance. We are able to make deeper connections and learn much more about each other when it is the same smaller group of us, but there is an absence of diversity. 

So when I logged on to see nearly 30 women in attendance, I was in shock! (And also a little curious about how long it would take us to get through introductions! Ha!) There were women with brand new diagnoses and women who have been a patient for months and had just found Cervivor. In every case, each new introduction tugged on and successfully pulled some tears. Where I was nearly a year ago, here these women are fulfilling what I had dreamed for the reach of Cervivor. I have wanted to see more women finding this incredible group sooner in their journeys, and it was happening right before my eyes. Every time I thought about these beautiful women that came off so incredibly strong right out of the gate, the tears overtook my hard-shelled heart. 

I know how hard everyone in the Cervivor community works behind the scenes, and it’s amazing the amount of things you see put together. The number of things they are constantly working on would blow your mind. To be associated with these hard-working ladies is an honor, and to be able to recognize the growth of the group is so cool! I’m not sure if it is success that you can measure by attendance and participation, but it sure feels like it. Thank you, Cervivor, for giving me another home that just fits, and the opportunity to see the growth and success, as well as take pride in such an incredible organization. You help me live through so many seasons, and with this one, I am beaming with pride.

Jodi is the recipient of Cervivor’s 2022 Brittany Wagner Social Media Advocacy Award and is a passionate advocate. She shares the highs and lows of living with cervical cancer and brings light to our community.

Let’s Talk About Below-the-Belt Cancers

When the calendar turns to September, it’s a good reason for anyone touched by gynecological cancer to share their story because September is Gynecological Cancer Awareness Month (GCAM).

For those of us in the Cervivor community, September is a significant opportunity to pull out our advocacy boots (and dust them off if they haven’t been used in a while), put below-the-belt cancers in the spotlight, and pick up our momentum to carry us through the remainder of the year. 

Why is GCAM so important?

  • Late-stage cervical cancer is being diagnosed at higher rates in the United States. Historically, cervical cancer has disproportionately impacted Black and Hispanic women. In this study, the overall prevalence of the disease was higher in Black women and there is a large increase in diagnoses for Non-Hispanic White women (CNN).
  • Uterine cancers are on the rise, especially in Black women. It is quickly making its way to becoming the third most common type of cancer among women (NY Times).
  • Fertility and quality of life are still impacting those diagnosed with gynecologic cancers (Oncology Nurse Advisor).
  • Intersectionalities in sexual orientation as well as race and ethnicity show significantly lower odds of undergoing routine cervical cancer screenings (Health Day).
  • Reducing social detriments can improve quality of life, increase survival rates, and close the gap in racial disparities (ASCO Post).

We know there are so many more to list which is why Cervivor continues to be actively engaged in gynecologic cancer awareness. We’re committed to sharing our stories, spreading awareness, and showing the people impacted by gynecologic cancers. We’re facing these disparities head-on!

How can you get involved this GCAM?

  • Share Cervivor content during GCAM. We will have plenty of graphics, articles, and other resources to share with your social media network, across all platforms. Make sure to follow us on Facebook, Twitter, Instagram, TikTok, and Pinterest.
  • Wear Teal and White on #TealandWhiteTuesday. Don’t forget to tag us on Instagram and post your photos in the comment of our Facebook posts!

  • Share your Cervivor Story. Have you shared your story with us on Cervivor.org? Sharing your story on our site is a powerful tool for getting your story out there. Our template guides you with questions, to help you share your cervical cancer story in a way that is personal to you. You can share as little or as much as you like. Once you have submitted your story and it is published, you will be able to share the link with others. Need help getting started? Send us an email at [email protected]!

  • Contact local media to share your Cervivor story. Many times, local news stations, newspapers, and neighborhood publications are looking for content. Reach out to them and share your story. If your story is on Cervivor.org, share the link with them when you reach out.

  • Host a Cervivor Meet-Up. Meet-Ups are local gatherings of Cervivors, networking and sharing in a social environment. You can hold a Cervivor Meet-Up in a coffee shop, restaurant, bar, or anywhere you feel is a welcoming and relaxed place for Cervivors to talk and share. If you’re interested in hosting a Cervivor Meet-Up in your area, contact us at [email protected]. *Cervivor recommends following the latest CDC recommendations for any gatherings.*

  • Become a Partner in Purpose. From care team to community member, your role in cervical cancer awareness, treatment, support, and prevention is of the utmost importance to us. Interested? Sign up here.

  • Donate to Cervivor or host a fundraiser on behalf of Cervivor.

We look forward to a successful GCAM and can’t wait to see how our Cervivor Community comes together to bring awareness to gynecologic cancers!

End Cervical Cancer Disparities in Communities of Color

August is Black Philanthropy Month! Join us today to give back to Black-led nonprofits. We’ll be highlighting the important work we’re doing in the cervical cancer space, members of our community, and ways we’re trying to eliminate disparities for Black women and cervical cancer.

Black women are impacted, disenfranchised, and disproportionately impacted by healthcare affordability and access, by lack of comprehensive sexual health education, and by historic mistreatment of people of color, particularly Black people, by the healthcare community.

“You know, we talk about breast cancer. So, we have to talk about below-the-belt cancers like cervical cancer, too. We have to show the faces of people who have cervical cancer.” – Tamika Felder, Founder & Chief Visionary, Cervivor, Inc.

We are addressing the disparities in sharing our stories, increasing screening rates, encouraging vaccinations, and participation in clinical trials. Research tells us that when cervical cancer is detected and treated early enough, women have a 93 percent five-year survival rate. 

We like these numbers and must rid ourselves of the disparate stats harshly impacting Black women. Every woman deserves to be screened, to receive equitable treatment, and to know they have a fighting chance at being a Cervivor! Let’s fight collectively to protect, prevent and prevail!

Start by donating to Cervivor today! Without generous donors and sponsors like you, none of this crucial work would be possible.

We’re Part of the Process

Kimberly Williams, Cervical Cancer Survivor

In July 2022, I was invited to my first NRG Oncology semi-annual conference as a newly appointed Patient Advocate. Many of you might be wondering, who NRG Oncology is and what they do?

NRG Oncology comprises the National Surgical Adjuvant Breast and Bowel Project (NSABP), the Radiation Therapy Oncology Group (RTOG), and the Gynecologic Oncology Group (GOG). Together they have more than 150 years of cumulative experience in conducting practice-defining, multi-institutional phase II and III trials sponsored primarily by the National Cancer Institute (NCI).

I’ve never had the opportunity to attend a large oncology conference like this before. There were so many emotions that ran through my head as my colleague and I rushed hurriedly through the building to locate our next sessions to attend. One thought that came to mind was “the why,” like why am I here? After attending the Patient Advocates forum I found that my why never changed. It was for the patients and for our community.

Sitting in the meeting encouraged me and helped me realize that all the patient advocates desire the same thing: we want change. We are equipped with the knowledge to make a difference. We have lived through this experience personally. This meeting was easy (at least easier than I anticipated) as I spoke about my cervical cancer story and my “why” for patient advocacy.

Just as I thought, “This is simple,” the next morning I sat on the panel for the Cervix and Vulva Sub-Committee with physicians, researchers, and so many more experts. I sat down next to the committee chair, Dr. Charles Leath. It was at that moment I said, “This is not simple.”

I was overwhelmed with emotion but soon felt confident because I understood the presentations as they related to clinical trials because I went through treatment as a patient. This one moment shifted my thoughts from ordinary to extraordinary. I realized that my voice mattered and it was important. The NRG Oncology semi-annual meeting was an opportunity I will never forget because it was a reminder that your “why” should be at the forefront of your patient advocacy.

Morgan Newman, Community Engagement Liaison

I was a patient advocate that was chosen on the other side of the NRG Conference with the GOG Foundation patient advocacy efforts. To understand their organization, let’s look at the history behind the Gynecologic Oncology Group:

  • It was founded in 1970 at the American College of Obstetricians and Gynecologists.
  • In 1993, the GOG Quality of Life Committee was formed and patient-reported effects of chemotherapy was the main protocol for their clinical trial development to continue to improve patient quality of life. 
  • And in 2014, their trial GOG-240 showed improved survival rates when bevacizumab was added to chemotherapy for advanced cervical cancer.

Now, this is only a brief glimpse into what this group has accomplished. I was incredibly fortunate to have the opportunity to be one of two Mary “Dicey” Scroggins Patient Advocacy Travel Award recipients. Through this scholarship, I was honored at the GOG Foundation dinner, attended working committee meetings, and learned from the dedicated professionals leading the work in developing clinical trials.

What I learned during this conference was that the GOG has set the standards for cervical, endometrial, and ovarian cancers. They continue in partnership with NRG Oncology to strive for a better future for patient care and outcomes in clinical trials. This experience has made me feel like I was truly part of that process.

When I was diagnosed with a metastatic recurrence of cervical cancer in 2016, I never would have imagined being where I am today as a patient advocate. I really didn’t understand or know how my voice could help make a difference but every time I have an opportunity to attend and interact with experts in the field, I am quickly reminded just how important it truly is and how far I have come since then. Sometimes these feelings are hard to put into words. It can be overwhelming to experience this as a survivor and a patient advocate but it’s something I appreciate and I am forever grateful for.

Kimberly Williams and Morgan Newman are both cervical cancer survivors turned patient advocates. Kimberly represents her state of Texas while Morgan is in Iowa. They are both passionate about making sure the patient voice is heard.

Ending Cervical Cancer Starts with Us

Preoccupied much? It happens. Especially when caring for yourself and others, mourning loved ones, slogging through a global pandemic, and attempting to check off all of the things from your personal and professional to-do list. Because we were quarantined and protecting ourselves, we probably missed a few important benchmarks, library books that may have been due, or our annual dentist appointment may have fallen off the calendar. We know first-hand that everything simply can’t be done. But Cervivor does want to help you prioritize the following three things before summer’s out. (Don’t worry, you’ve got two more months to go!)

1) Stay up-to-date on screenings.

Did you know? Anyone with a cervix is at risk for cervical cancer. Each year, 14,100 individuals will be diagnosed and 4,280 will die as a result of cervical cancer. This disease is the only type of cancer caused by HPV that can be detected early by a recommended screening test. It is also highly curable when found and treated early. Knowing this we will continue to share information on risks, prevention, treatment, and resources.

Not sure of what guidelines to follow? Check out the American Cancer Society’s cancer screening guide, schedule your appointment, and have this meaningful conversation with your doctor.

2) Share YOUR story with others.

Your Cervivor story is unique. It helps others to feel seen. And it helps us feel heard – when we are ready to use our voice, of course. Sharing your story is also a crucial aspect in educating the public, caregivers, medical professionals, and even those funding cancer research.

Seeing and hearing your lived experiences amplifies what others, too, may be going through and helps to further research, offers a personal accounting of what cervical cancer looks like, and most importantly – empowers us more and more to thrive. Take a look at these beautiful testimonies, and consider sharing yours with Cervivor.

3) Start vaccinations early.

According to the June American Cancer Society 2021 HPV VACs Impact Report, about 3 to 4 million HPV vaccine doses were missed. “ACS health care partners maintained rates for 9- to 13-year-olds, growing shot series initiation by 2 percent for ages 9 to 10 and shot completion by 2 percent for age 13.”

Cervivor is happy to partner with organizations like St. Jude’s HPV Cancer Prevention Program, the American Cancer Society, and the National HPV Roundtable (to name a few)- all of which continue to help prevent HPV by increasing HPV vaccination rates for this age group. HPV vaccination can prevent more than 90 percent of these cancers if given at the recommended ages. 

Our new mantra is “start at 9.” Giving a strong recommendation for the 9-year-olds in our lives will increase vaccination success, according to the National HPV Roundtable. When we take our young people to health providers at age 9, it provides ample time to complete the HPV series before age 11, which is when they receive their Tetanus, Diphtheria, Pertussis (Tdap) and Meningococcal (MenACWY) vaccines. More than 75% of U.S. parents have chosen to protect their children from HPV cancer with the HPV vaccine.

Since August is National Immunization Awareness Month, let’s raise that number even more! Together we can end cervical cancer, once and for all! 

Take a look at how survivors in our community have shared their stories and are making a difference:

Need some additional help in prevention messaging? Take a look at the resources in this toolbox created by the National HPV Roundtable, and share with your networks, friends, and families. This impacts everyone, and with your support, we can change the course of cancer.

Some Four-Letter Words Help Us Heal

HALT!

The word “halt” translates to “stop” in German. But HALT is also an acronym that stands for Hungry, Angry, Lonely, and Tired. Rather than letting our feelings run amok, HALT allows us to grab hold of the wheel and control what’s happening from the driver’s seat. 

The purpose of the HALT method is to help us feel better when we are feeling upset and it is often used when we are feeling emotionally off-centered. The HALT method addresses how our state of being and human needs might be linked to making hasty decisions – with words, actions, and thoughts. When one or more of these areas are out of balance, we will likely struggle with (mental) health and our overall well-being.

Let’s break down each letter of HALT:

The H stands for hungry:  It is well-researched that human behavior changes when we are hungry. Hunger causes us to value the short-term over the long-term and leads to hastiness with decisions. Chemicals in our brain also change to heighten anger when we are hungry.

If you discover the cause of not feeling well emotionally was hunger, you can take a momentary break from whatever you are doing, eat a handful of nuts or dried fruits, rest and enjoy them as much as you can, and allow your body and brain come back to baseline. As your body is coming back to baseline, you will think more clearly and feel calmer. This helps avoid hasty remarks and snappiness and alleviates uncomfortable moods.

The A stands for angry:  Anger can be an unpleasant and damaging emotion, but it is normal to feel angry – everybody does at one point or another.

Just because you feel angry doesn’t mean there is something wrong with you. However, feeling chronic, persistent anger is unhealthy and becomes a problem when you have a hard time letting it go and it seeps into other areas in your life.

Some heathy ways of coping with anger can include stress management, spirituality, prayer, and meditation. You may find it helpful to keep a record of the things or people that trigger anger. You can then reflect on whether your anger is justified and take the “heat” out of the situation.

The L stands for lonely: When we find ourselves cut off from contact with other members of our social group or community, we can feel lonely, which can be very unhealthy. It is no wonder that social isolation has made our social interactions more difficult during the pandemic.

When we are surrounded by positive influential people who we have a strong connection with, we are less likely to engage in negative behaviors. Of course, we can be lonely even when we are surrounded by a lot of people, but that makes meaningful relationships even more important.

Finding social groups that share similar interests as you is a good first step. Maybe your daily routine is causing you to retreat into your shell. If so, shake it up a little! Calling a friend or visiting a loved one might be just what you need. You can also simply go out in the world by taking a walk, running errands, or going to a coffee shop rather than hiding from everyone. Reach out and connect with others who want to see you happy and healthy.

The T stands for tired: Making sure we get enough sleep at night can help to improve not only our physical well-being but also our emotional health.

When we are physically and emotionally tired, we are more likely to engage in a negative thinking pattern. The amount of sleep we need varies with age, but the U.S. National Sleep Foundation’s guidelines recommend between seven and nine hours of sleep per night for an adult.

The quality of sleep is also important. The brain only “recharges” properly through Rapid Eye Movement sleep (REM). This high quality of sleep level can be hampered by drinking alcohol or caffeine-based drinks in the evening or by trying to deal with difficult issues late at night.

Screen use, including checking notifications on your tablet or cellphone, can also have a negative impact on your sleep. Remember that it is best to stop using screens an hour before going to bed. 

The HALT method is a wonderful reminder of the simplest things we often forget to do to take care of ourselves. Just check in with yourself periodically and ask how you are feeling in these four categories. Your check-ins can occur daily or weekly, while other times you may check in with yourself hourly. How often you use the HALT method is totally up to you! 


Jessica Martin was born in Germany and holds a M.Sc. in Psychology. She moved to the United States in 2018 and was diagnosed with cervical adenocarcinoma, stage 1B2 shortly after her move. Jessica is passionate about the mental health aspect of healing.

Transcending Passion Into Purpose

When my chemo and radiation treatments ended in July 2013, I struggled to return to my normal life, including my career in agricultural field research. Physically, I no longer had the stamina to work in a corn field for up to ten hours a day. Mentally, I began to question if I was even passionate about my job anymore. I had just survived cervical cancer, so I didn’t want to waste another minute in a job that wasn’t fulfilling. I felt lost and knew I needed to find a new career path that would give me a better sense of purpose. 

I thought hard about what I was passionate about and how I could turn that into a career. I knew I was passionate about cancer advocacy but didn’t know how to apply that to a job quite yet. I found the field of cancer registry interesting but knew little about it. I thought about cancer registry off and on over the next few years but kept dismissing the idea of becoming a cancer registrar because it would require two years of schooling to become certified. 

Cancer registries are important because they reduce the burden of cancer on the community by improving patient outcomes and ensuring funding for public health cancer prevention programs. A cancer registrar is responsible for collecting, maintaining, and reporting cancer data on all cancer types diagnosed and/or treated within a hospital or other medical facility. This data is entered into a cancer registry system, or database, that is then reported to state and national cancer registries. 

Cancer registry data is used by many, including oncologists and other doctors to compare cases for treatment plans, researchers for clinical trials, public health officials for evaluation of cancer prevention programs, policymakers to determine state and national funding of cancer control programs, and cancer organizations for statistics (like the American Cancer Society). 

In 2020, amid the pandemic and working from home, I decided to go for it and enrolled in an online program to become a certified cancer registrar. I am now one year into the program and am enjoying every class I take. I feel like I have a sense of purpose that was missing.

Someone once told me that cancer registrars impact cancer advocacy, policy, and research. This is so true! Knowing that my future job will impact cancer in these ways is exactly the fulfillment I am looking for in a career. It may have taken an unexpected cancer diagnosis, a lot of personal reflection, and seven years to figure out a new direction for my career path, but by the Spring of 2023, I’ll achieve my goal of becoming a certified cancer registrar. You too, can start achieving your goals in 2022, by focusing on your passions with a willingness to persevere. 

Emily is an eight-year cervical cancer survivor who was diagnosed with stage 2B cervical cancer at age 30. After cancer, Emily didn’t realize she even had an advocacy voice until she attended her first Cervivor School in 2016. Today, she is a patient advocate and Cervivor Ambassador who shares her cancer story to raise awareness for ending cervical cancer and to educate others on the importance of cervical cancer screenings and prevention. Emily is the recipient of the 2020 Cervivor Spark Award and the 2022 Cervivor Champion Award. She plans to graduate with her certification in cancer registry in spring 2023.

Redefining Patient Advocacy in 2022

When I was originally diagnosed in 2018, I decided that I wanted to recover from surgery and move on with my life. I didn’t want to hear the word “cancer” anymore. But in April 2019, my life changed as I was informed I had a reoccurrence of cervical cancer and I decided I wanted to be a change agent.

I started with my community by sharing my story with those connected to me via social media but in 2021 I felt like it just wasn’t enough. After speaking with the Cervivor community, I decided to redefine my patient advocacy in 2022. 

Here’s a snapshot of how my 2022 has gone so far:

January 2022 I participated in an interview with NPR (National Public Radio) in reference to cervical cancer among Black women that was aired in Georgia and via their social media handles. I also joined the Texas HPV Coalition to raise awareness as it relates to the HPV vaccine. 

February 2022 I was a panelist for the Black Women and Cervical Cancer Webinar hosted by Cervivor. My children and I were also a part of a PSA for HPV Awareness Day through the National HPV Vaccination Roundtable and Association of Immunization Managers that was featured on television and in physician’s offices in Tennessee and also via their social media handles.

March 2022 I completed volunteer training with the American Cancer Society which allows me to share my story locally through ACS CAN. I also completed a radio interview with Zakiya Jenkins who is based in Iowa in reference to cervical cancer in the African American communities. This interview was aired in Iowa and on Ms. Jenkins’ social media handles.

April 2022 I spoke at the Women of Color, Inc. brunch as it relates to cervical cancer among Black women, prevention, and early detection. I also spoke at YES Prep secondary school through the American Cancer Society where I shared my story and encouraged families to research the HPV vaccine.

May 2022 I spoke at Green Valley Elementary school through the American Cancer Society where I shared my story and encouraged families to research the HPV vaccine for their children. I was also chosen to be a Cervix committee Patient Advocate through NRG Oncology.

June 2022 I spoke at the HPV forum with the American Cancer Society, shared my story at a National Cancer Survivor’s Day event in Charleston, SC, and was a panelist for the Tigerlily Listening Summit powered by Labcorb, in which I shared my story and shared my experience as a patient including the disparities among African American women.

As a result, the last six months have blown my mind and have shown me just how much our stories have the power to create change. I encourage all of you to share your story. Be a change agent for this community and get active because you can redefine your advocacy in 2022!

Kimberly is the 2022 Cervivor Rising Star recipient, a joy-sparking, active member of the Cervivor community who is moving mountains. Thank you for all you are doing to end cervical cancer!

Patient Advocates Matter

My cervical cancer story began when I was 24 years old. I had graduated from a local dental assisting program and worked in the field for only a couple of years when I was diagnosed on World Cancer Day 2015. I was completely devastated that cancer was happening to me! I mean, I knew I had a cervix but I was naive to the fact that I could get cancer “there.” And wasn’t it most common for older people, not younger people, to get sick? That’s when I realized how gravely wrong I was. Didn’t I just witness a high school friend succumb to cancer just a year before? She passed away at the young age of 27 and I truly thought that was going to be my destiny. I didn’t know anyone else my age that was going through it.

All throughout my treatment, I placed blame on myself for getting cancer, and even though I felt that deeply, I knew I wanted to do something more to help others. I wanted them to know about cervical cancer and how Planned Parenthood saved my life with their preventive screening services. I wasn’t sure how to start advocating or sharing my story, so I started spreading awareness by handing out little ribbons I made. (Some of my friends still wear them to this day).

If you would have told me back then I would become an award-winning patient advocate, I never would have believed you. You see, I’ve suffered from social anxiety throughout my entire childhood and adult life. It wasn’t until I was finished with cancer treatment that I found out about Cervivor, signed up for Cervivor School, and grew into the patient advocate I am now.

I have been involved with the organization since 2017 and have been presented with some pretty incredible opportunities – including employment by the organization. I started in 2021 when everything had been pretty virtual but this year, in-person events have started happening more frequently. Team Cervivor, consisting of Cervivor Founder, Tamika Felder, and myself, made the decision to attend the annual meeting of the American Society of Clinical Oncology (aka ASCO). As a first-time attendee, I can say I was completely blown away! This event was massive and full of oncology’s leading cancer researchers, clinicians, thought leaders, industry partners, advocates, and so much more!

We kicked off the week-long conference with a breakfast meeting in which we were able to connect with so many people – putting names to faces that we’ve been working with via Zoom meetings and emails for the last few years. We had a constant line of people waiting to talk with us about our work and hear our stories. It could have been the lack of caffeine but it really didn’t hit me until midway through that breakfast – the impact of our work as patient advocates is crucial in the oncology world. This made me even more proud to be working for the organization that gave me my voice.

Dr. Martina Murphy was one of these people who expressed just how important our work is including our Comfort Care & Compassion Program. She says, “Cervical cancer is a disease where we need so much more attention and work. The impact of this group is powerful.”

We continued to attend meeting after meeting and heard a consistent message across the board: we are dedicated to putting equitable patient care as our priority. We heard how patient advocate voices have a seat at the table and how we are leading engagement for some important topics across social media platforms. The realization hit me once again: We make a difference every day. Patient advocates matter.

Now, we made sure to celebrate a little while we were in Chicago too. The Sunday of the conference was a day recognized as National Cancer Survivors Day and we had A LOT to celebrate: Tamika was 21 years cancer free and was given the most exceptional gift and I was just days from officially being 6 years cancer free. We made sure to spend time with some friends and partners – both new and old, to eat incredible food, and to take time to unwind.

It has truly been eye-opening and so rewarding to see the kind of impact my story has had in the last several years. It’s been a lot of hard work and it’s taken time to see the results. But I know it’s not just my story in this. It’s the collective of our stories pushing for the same mission: to end cervical cancer once and for all.

Morgan Newman, MSW, Outside of her Community Engagement Liaison position at Cervivor, you can find Morgan nurturing her relationships with local community partner organizations like the American Cancer Society Cancer Action Network (ACSCAN), the Iowa Cancer Consortium, and serving as a board member for Above and Beyond Cancer. Learn more about Morgan at Cervivor.org.

Honoring Culture & Making an Impact

Alexander Hamilton.
General Colin Powell.
Shirley Chisolm.
And Kadiana Vegee.

These Caribbean-Americans are worthy of a shout out, and Cervivor wants to shout from the rooftops Kadiana’s name because she is the epitome of beauty and pride. As we celebrate Caribbean-American Heritage Month, we want to share Kadiana’s survivor story which reminds us of true beauty.

Having lost her mother to ovarian cancer, and her father to prostate cancer, Kadiana and her sisters took genetic tests to learn where their own health stood. While her sisters were in the clear, Kadiana’s tests revealed the BRCA 1 gene mutation. She quickly chose to have preventative surgeries.

“I had a double mastectomy without reconstruction, and I also had to have my ovaries and my fallopian tubes removed,” explained Kadiana. “ … The decision that I made was not just for myself and to stay alive, but it was also for my kids.”

The most frequent cancers in the Caribbean are prostate, breast, lung and bronchial, colorectal, and cervical cancers, according to BMC Cancer journal. Further, the five most frequent sites for cancer deaths include lung and bronchial cancers, prostate, colorectal, breast and stomach.

To be specific, Black-Caribbean women have a high prevalence of late-stage breast and cervical cancer diagnosis due to a low prevalence of screenings, according to dignity, shame, stigma, or ignorance in avoidance of breast and cervical cancer screenings among women of Caribbean Descent, published by the Open Journal of Social Sciences. After conducting focus groups, researchers concluded that a lack of trust in the health system, stigma, and shame contributed to avoidance of cancer screening – all similar to what we see and experience for ourselves.

While Kadiana acknowledges cancer will “always be a part of my life, from the long lasting side effects to the constant fear of reoccurrence,” her fervor to thrive, her beauty and her pride in taking back her life can be seen, felt, and heard. We are elated to know that Kadiana is a Cervivor advocate willing to share her story, boast her war scars, and champion the need for rights, resources and self advocacy.

“It felt like a blessing because I knew and I had the option,” said Kadiana about making her decision. “I stand unashamed … It’s not how I look on the outside. It’s how I look on the inside, and I really do feel beautiful.”

Pride in Diversity, Equity, and Inclusion for Cancer Care

Inclusivity is the buzzword of our times right now, and Cervivor is here for it! It’s our hope that the practice of being inclusive doesn’t fizzle out like a trend, and that cancer survivors are included in the inclusivity population.

This hope also rings true when it comes to LGBTQIA issues, rights, and the cancer community. We are bringing this up during Pride Month (Happy Pride!) because many LGBTQIA+ community members who have and have had cancer do not feel welcome or understood in mainstream support groups, and transgender survivors have been specially excluded, according to the Cancer Network.

During a Cancer Network podcast interview, Dr. Don Dizon, who works on ensuring higher levels of gay and transgender participation in clinical cancer trials said, the medical community needs to “[support] people who have felt misaligned in medicine—people who have been the subjects of discrimination. Honestly, you hear the anecdotes of people who are treated unkindly, not to put it mildly.” 

Many of us know the host of feelings that drench our minds the moment we hear a cancer diagnosis. The days, weeks, months, even years after, we are still overcome with scores of emotion including isolation, and feelings of not wanting to belong, are natural and to be expected. However, the actual act of being excluded – even if just a feeling of not being considered – is unacceptable and can be detrimental to our psyche, which, in turn, impacts physical health.

The 2018 LGBTQ Health in Iowa report tells us that scientific evidence has shown that sexual and gender minority individuals are more likely to smoke, be overweight, and have a greater risk of certain cancers. Further, this group is less likely to receive appropriate health care than heterosexual and cisgender peers. We’re not having it!

That’s why we are happy to boast a few organizations and individuals whose missions include providing equitable resources, highlighting the voices of LGBTQIA+ survivors, offering a sense of community, and training caregivers to medical staff on inclusivity and its importance including Cancer Network, Escape, and One Iowa.

Photo Courtesy of Globeathon

“We need to do better for those individuals, so that they’re not delaying access to care [and] that they are participating in our screening programs,” continued Dr. Dizon, who is also director of women’s cancers at the Lifespan Cancer Institute, director of medical oncology at Rhode Island Hospital, and professor of medicine at the Warren Alpert Medical School of Brown University in Providence. 

“At the end of the day, we as oncologists all want to do the right thing. This is part of doing the right thing.”

The Power of Community and an Exceptional Gift

⚠️ This content may be triggering for some. Includes infertility and pregnancy. ⚠️

Dearest Cervivor Community,

Happy Survivorship Month! No matter where you land, it’s a reason to celebrate. Even if you’re just celebrating today. We all get so caught up in milestones. It’s hard not to. Comparisons are everywhere and we all just want so much more time. But what I’ve learned over the years is that each new day is really the greatest gift. One day at a time.

Beyond National Cancer Survivor Month, I’ve got a bunch of reasons to celebrate. June is also my birthday month (yay for birthdays!), and today marks the anniversary of my radical hysterectomy at Johns Hopkins in Baltimore, Maryland.

Twenty-one years! I remember when the hospital called to confirm my surgery. I was 25 years old, shocked and terrified that I wouldn’t get to see my 26th birthday. I pleaded with the scheduling coordinator to schedule surgery after my birthday. I thought, if this was it, I was at least going to celebrate one last time. But I didn’t get my way. My radical hysterectomy to rid my body of the cervical cancer tumor that was taking over was scheduled for June 14, 2001, at 7 am. I walked myself into the operating room, got up on the table, and woke up hours later – forever changed, both physically and mentally.

I didn’t know then how my own diagnosis with cervical cancer would play a role in my own life, as well as the lives of others. I couldn’t even imagine my current role as a patient advocate, and leader in the cervical cancer patient advocacy space. It certainly wasn’t a goal of mine, but I just created what I wished I’d had. This “work” has been life-changing, fulfilling, difficult, triggering, and yet one of the greatest joys of my life. I’m proud of what we’ve built together as a community. My dedication to our cause is greater than ever before.

The last few years have been challenging to say the least. We’ve weathered so much together, and now we can include an ongoing pandemic to that list. During the pandemic we kept the community going with virtual events. In fact, it was during one of those virtual events that I met someone so very special from our community, Ginny Marable.

Ginny joined us for several events and was even a speaker at our September 2020 Cervical Cancer Summit. While I was learning more about Ginny, unbeknownst to me, she was also learning more about me. She saw my true desire to be a mom, and the heartbreak that it would probably never happen due to my hysterectomy.

Fast forward: Ginny and her husband Sean began their path to parenthood via a gestational carrier. She shared their beautiful journey with us as a community, as well as on social media. When her twin boys were born, I was so elated for them, but if I’m honest, I also felt that familiar ping that I would never experience that moment. But I was just so happy for her, that feeling of sadness was fleeting.

Another short fast forward: Ginny reached out to me for a phone conversation. Never in my wildest dreams could I have known how that call would have changed my life. I mean, I haven’t even met Ginny in person – only through our virtual space. So, I’d like to make June even more memorable by sharing with my Cervivor community at large that Ginny is giving me an exceptional gift that I never imagined could be bestowed on me – motherhood.

Ginny has simply taken the power and love of this community to an entirely different level. We shared our unique story with Insider and you can read about it here.

My hope is that you will feel all the love, and our “Cervivor Spark”. But simply, thank you, Ginny!

With Love and Gratitude,

Tamika Felder
Chief Visionary, Cervivor, Inc. 
21-year Cervivor
Mom-to-be

Clinical Trial Awareness Month: Cervical Cancer Needs YOU!

That first season of a TV, Netflix, or cable series is a total experiment. Producers wonder how the characters will resonate with the target audience. Advertisers are hopeful that their two-minute commercials and ads are crafted well enough to bring in sales. And actors cross their fingers that fans love each episode more and more, and demand a second season. The result: a cult following of a show that lasts for years, providing viewers the comfort of entertainment and solace.

While it may be a stretch, we can think about clinical trials in the same way. This method of medical research, is in fact, a pilot program for scientists to experiment, test, and prove what works, and what can result in medical breakthroughs – again, for the comfort and solace of those impacted by health challenges like cervical cancer.

You may have heard us at Cervivor championing the dire importance of clinical trials. We continue to stress the importance as this is the only way we can pave a way toward slowing down the loss of members in our community, thriving without having to lose parts of our bodies, and ultimately eliminating cervical cancer.

We said it before:

  • We need clinical trials to drive progress.
  • We need trials to determine the safety and effectiveness of every type of treatment.
  • And in order to determine that safety and effectiveness, we need volunteers.

We choose not to subscribe to the stigma around being a “guinea pig” or a “test dummy.” Without clinical trials, treatment, diagnosis, and prevention efforts are slowed down. The effectiveness of new medication, treatment, and therapy can only be proven through trial – and yes, error. Take a look at the thousands of trials around the globe currently recruiting patients, in addition to those that are active, completed, and terminated with results. Thanks to people including several of our Cervivor community members like Teolita, Erica, Jenn, and Linda much more work is being done daily to make sure our community – and the generation after us, and after them – can thrive.

“I decided that if this clinical trial was good enough for Jimmy Carter, it was good enough for me!” – Teolita Rickenbacker

It’s important to note that Cervivor advocates for cultural competence throughout our medical journey, including in the clinical trials process – and we should all be looking out for this. This means, making sure that the medical community understands, and is intentional about how they communicate with a diverse audience of women, whether Black, Brown, young, mature, and those who speak a language not native to their medical team. It is super important that the medical community, including those coordinating trials, speak different languages, and understand the experience of those who are part of a focus group. This important aspect aids in building and maintaining trust with those participating, which, in turn, helps us trust in both the process and the expertise of trial organizers.

This process takes a lot of teamwork: scientists work on hypotheses, patients report on progress and challenges, and doctors monitor outcomes. The result: an increase in clarity, more answers, more awareness, more options, and longer lives. Have a discussion on clinical trials with your care team and support system. Learn more with these recommended resources:
https://www.webmd.com/cancer/cervical-cancer/cervical-cancer-clinical-trials
https://www.clinicaltrials.gov/ct2/home

If you have experience with a clinical trial and want to share it with us, contact us at [email protected].

Observing Asian American and Pacific Islander Heritage Month

Happy Asian American and Pacific Islander Heritage Month! This month, we pay tribute to the generations of Asian Americans and Pacific Islanders who have shaped America’s history. Asian American and Pacific Islander Heritage Month originated with Congress in the late 1970s and is recognized and celebrated worldwide today!

We are celebrating by honoring some of our resilient Cervivors and continuing to spread awareness to reduce health disparities within the community but first, let’s take a look at some of the glaring statistics.

In 2022, the American Cancer Society released their Cancer Facts & Figures report stating the rates of new cancer cases and the rates of cancer deaths among Asian Americans, Native Hawaiians, and Pacific Islanders varied widely, mostly because of significant differences in exposure to cancer risk factors.

Of these findings, they found that:

  • Cancer is the leading cause of death in the Asian and Pacific Islander population in the US.
  • In 2022, an estimated 14,100 cases of invasive cervical cancer will be diagnosed and about 4,280 deaths will occur in the US.
  • Large variations in cancer occurrence within the API population reflect diversity in terms of geographic origin, language, acculturation, and socioeconomic status.
  • According to the US Census Bureau, in 2020, 20% of Black and 17% of Hispanic/ Latino populations lived below the poverty line, compared to 8% of non-Hispanic White (White) and Asian populations.
  • In addition, in 2019, 10% of Black and 19% of Hispanic/Latino populations were uninsured, compared to 6% of White and 7% of Asian populations.
  • Cervical cancer incidence rates among Cambodian, Vietnamese, and Laotian women decreased dramatically from 1990 to 2008, a change that has been attributed to increases in screening and treatment in these groups.
  • The use of the Pap test within the past 3 years is highest among Filipino women (83%, the same rate as in non-Hispanic whites), and lowest among Chinese women (66%).
  • The 5-year relative survival rate for cervical cancer is 66% overall, but ranges from 39% for Black women 65 years of age and older to 79% for White women under 50, and from 92% for localized-stage disease to 18% for distant-stage.

Meet some of the Asian Americans and Pacific Islanders in our Cervivor community who want to change these statistics!

Meet Arlene, a Washington state Cervivor who recently shared her story to help make a difference in her community. She says, “In honor of Asian American and Pacific Islander Heritage Month and Mental Health Awareness Month, I am humbled to share Part 1 of my cervical cancer journey! It’s time to RISE UP and be a voice! I am no longer ashamed!”

Meet Gina, a cervical cancer patient residing in Maryland. She just learned a year ago about her cancer diagnosis less than a week after turning 32, and 13 weeks after learning she was pregnant. Hear directly from Gina as she shares her story in our CervivorTV video below – We know you will appreciate, empathize with, and want to share with your networks.

We are also super excited to highlight California Cervivor, Joslyn Chaiprasert-Paguio. We love Joslyn because of her energy and advocacy, and if you’ve listened to the first episode of Season 2 of the Cervivor Podcast, you know we are happy to announce that she will be taking over as the host of the podcast! Joslyn will be bringing a new perspective as a Gen Z-er and as a recurrent cervical cancer survivor. Join us in wishing Joslyn success in this new role and get ready for a new season of robust conversations to help us cope, heal, learn and thrive. Don’t forget to visit the Cervivor Podcast on your preferred listening platform and subscribe to get alerts about new episodes!

The Asian culture rarely discusses below-the-belt talk, awareness of, and the knowledge of how important their checkups with their healthcare providers are and they are highly underrepresented in our public health data, however, storytelling has made a difference in the population by increasing the awareness of HPV, cervical cancer prevention screenings, and vaccination. Studies have shown an increase in a more positive outcomes in health data.

Beyond Arlene, Gina, and Joslyn’s stories, visit Cervivor.org to meet other cervical cancer survivors repping the Asian and Pacific Islander communities and share their stories this month with your networks!

What’s your story? Are you a cervical cancer survivor? Your story matters. Share your cervical cancer story and make a difference. Click this link to follow our easy-to-use template.

The Cervivor Podcast: Season 1 Recap

In anticipation of the Season 2 release, we’re taking a look back on Season 1 of the Cervivor Podcast hosted by our very own Founder and Chief Visionary, Tamika Felder. It was a season where we laughed, cried, and learned from guests during Cervivor School 2017. We give honor and observance to those featured in these podcasts that are no longer with us. To be able to hear their voices, laughter and transparency is a special treat for us. We hope you think so, too.

If you haven’t listened to Season 1 yet, take a moment and do so now – currently available on Anchor.fm, Apple Podcasts, Google Podcasts, Pocket Casts, Radio Public, and Spotify.

Recap by Episode:

  1. Cervivor’s “Most Enthusiastic” awardee, shares all the things we wanted to know but didn’t want to ask in “Dry Panties, Depends, and Urine. What Does This Have to Do with Cervical Cancer?” Turn the volume all the way up and be proud as you listen to Holly Lawson talk about obstacles during diagnosis.
  2. “Everybody’s voice makes a difference,” says Erica Frazier Stum whose school-aged son knows his mother may be gone sooner than she should be. This podcast episode is a special treat hearing Erica’s voice posthumously who passed away in 2019.
  3. “Education 101: What is Lymphedema?” Heather Banks drops a few jewels around compression undergarments, drainage, swelling, and giving yourself grace when you just … can’t. 
  4. Balancing school, work, her grandmother’s dementia, and an unexpected stage 4 cervical cancer diagnosis, Teolita Rickenbacker says she found her calling amidst an overwhelming period. “It’s nothing wrong with having cervical cancer; it’s nothing wrong with having any kind of cancer. It’s just how you define it.” Listen to “The Will to Live: How Faith Got Her Through a Cancer Diagnosis.”
  5. In “Acceptance of Death: How She is Making Her Story Matter,” Lisa Moore shared her story of diagnosis, kidney failure, and coming to grips that once she passed, her 30-year-old husband would likely start a family with someone else. “I have accepted death. I’m done being stuck, I’m done being treated. I’m ready to just live my life … it’s a different kind of hope.”
  6. The aftermath of a car accident reveals Sierra Thetford has cancer, but despite a six-month prognosis to live, she sought solace in sharing her story and becoming a gym rat. Listen to “Wrecking into Cancer: How the Gym Became Her Refuge.”
  7. Lynn Tromp talks about cervivorship globally and being open to new experiences, “I trusted my medical doctor. He spoke to me with confidence. Even though it was a trial, he spoke to me with confidence,” said Lynn who lives in South Africa. Listen to “Cancer in another country: A Tell-all From South African.”
  8. In “Toxicity in Relationships: Coping with Cancer,” Dr. Ramani Durvasula talks with Tamika Felder about feminism, narcissistic relationships, and convoluted thoughts that we can experience during diagnosis and treatment. 

Season 2 of the Cervivor Podcast is moving past the archives. Join us on Friday, May 13, 2022 for the Season 2 Episode 1 release!

We’ll be welcoming our first guest, Joslyn Chaiprasert-Paguio. Joslyn was diagnosed with the Human Papillomavirus (HPV) at the age of 18 and with cervical cancer at the age of 24. She shares her story to encourage women and future generations, like her daughter, to advocate for themselves and make their health a priority. You’ll also hear what else you can expect on this Season of the Cervivor Podcast.

For more Cervivor-related content, check out our award-winning YouTube channel, CervivorTV. Follow Cervivor on all social media platforms and sign up for our newsletter. If you would like to be interviewed for upcoming Cervivor Podcast episodes or to request content or speakers for future episodes, fill out this form or contact us at [email protected].

Forward Focus for Women’s Health Week

In honor of the start of Women’s Health Week and for Mother’s Day, Cervivor kicked off the week with an open letter to young mothers going through cervical cancer treatment. Mother’s Day is a day that brings a lot of feelings up for us in the Cervivor community and it’s a reminder that motherhood is defined so differently for every single one of us.

The awareness week, May 8-14, 2022, is led by the U.S. Department of Health and Human Services’ Office on Women’s Health to serve as a reminder for women and girls to make their health a priority. A sentiment that resonates with us from our Cervical Cancer Awareness Month campaign, Take Care of You in 2022.

This year’s Women’s Health Week theme is “Forward Focus: Achieving Healthier Futures Together.”

Now is the time to put an emphasis on scheduling those screening and vaccination appointments, to put your mental and emotional health first, and to maintain and cultivate relationships with friends, family, and ourselves.

How do we focus on building a healthier path forward?

Screening and Vaccination 101
Take the time to schedule your annual physical and other health appointments. Have a conversation with your medical care team about any vaccines or preventive care you may have missed due to the pandemic. Check off your list of preventive tests which include cervical cancer screenings, mammograms, bone density scans, stress tests, cholesterol screenings, blood pressure screenings, physical exams, and other health screenings. Don’t let the cost of preventive care stop you, there are several programs available to help with this.

Mental and Emotional Health
Make time to unwind and focus on things you enjoy. Finding healthy ways to help you manage stress levels like meditation, yoga, and reading can help maintain balance with mental and emotional health. If you notice changes in your mood, behavior, and thinking that cause disruption in your day-to-day life, check in with your medical care team for further assistance. You may also want to keep these resources in your toolkit for future reference.  

Nourish from the Inside Out
Eating a well-balanced diet can go a long way in a healthy path forward. Check out everything you need to know about healthy eating and dietary guidelines here. If you’re a cancer survivor and are looking to for support in leading a healthier lifestyle beyond cancer, join our private Facebook group Survivor Slimdown.

Friends and Family
Stay connected with your friends, family, caregivers, and community. Talk with people you trust about your concerns and how you are feeling, it can truly help things feel less scary.

These are just a few ideas worth pursuing for a healthier path forward. Are you ready to take action?

From One Young Mom to Another, I See You.

Just as different as all of our cancer journeys are, so are our parenting styles and choices. My children were ages four and seven when I wrote this letter. They did not know their mommy had battled cancer twice during their short time on Earth. One day I will tell them the whole story and I hope they draw strength from it. But for now, I am so very thankful I was able to attempt to preserve their innocence throughout my treatments. They knew I had to go to the doctor often for my “tummy.” They were six months and three years old at the time of my original diagnosis and ages three and six at the time of my recurrence.

They knew they had to be careful with my arm because of my PICC line. Upon reflection, I know I drew, and continue to draw, my strength from knowing they need me. They are the very reason I managed to smile through it all. Now that they are a few years older, they have some understanding and knowledge simply because of my cervical cancer advocacy efforts and fundraising events. They both enjoy sporting their teal and white and proudly bring me drawings or things they find that remind them of cervical cancer awareness ribbons.

Dear Young Mom Going Through Treatments, 

You are their safe place; their steady fortress of love, their ever-present cheerleader. Your kisses make all of their boo boos better and your hugs melt away all of their cares. A glance from you can make them feel as though they can conquer the world.

Though they haven’t a clue, they are your total source of strength during these days.

I see you, and you are doing an amazing job. 

I see your brow wrinkled with worry for them. Worrying if you are handling this season of life the right way, worrying about them overhearing adults at school talking about their mommy’s cancer, worrying about what their tiny lives could be without you.

I see you grabbing your wig or hat, lathering concealer over your chemo-ridden raccoon eyes, and mustering up a smile to appear normal in the eyes of your children. 

I see you planning your appointments strategically so as not to miss a baseball game or dance class. I see you insisting the doctor’s office squeeze your weekly chemo session in on their jam packed Wednesdays because there are no after school extras to be missed. I see you biting your tongue and fighting back tears while the unknowing tell you how great you ‘look’ to be going through treatments and how wonderful it is that you ‘feel’ like being out at that ballfield and dance studio.

I see you soaking up as much rest as you can during their school hours and timing your medicines just right so you can make a futile attempt to be present during homework, dinner, baths, and story time. 

You just want to make sure they get every ounce of the’ normal you’ there is.

Though you don’t believe it now, your tiny sources of strength could never see you as anything less than their beautiful source of unfailing love.

Though they don’t know it now, one day they will. One day they will look back, and realize just how beautifully and courageously strong you were for them. 

You can do this. 

Strength & Love from A Mom That’s Been There 

Tracie is a mother of two amazing boys, and along with her husband, they spend their time enjoying the beauty of Alabama. Tracie is a Cervivor School graduate, Cervivor Ambassador and a well-seasoned Lobby Day advocate.

When the Psychotherapist Meets Cancer

I always thought that I’ve done very well in building up resilience, taking care of my physical and mental health, since that is basically what I do for a living. I am a Psychotherapist and am specialized in Cognitive Behavioral Therapy (CBT). I love the CBT approach in working with clients since it is a here-and-now approach, is time-limited, and is structured. I offer individualized treatment plans for each client that outline clear behavioral goals, as well as take an active role in coaching my clients by directing their therapy and assigning homework.

After undergoing a biopsy, my OB/GYN told me on my daughter’s 2nd birthday, “Unfortunately, it’s cancer”. I just sat there, repeatedly saying, “No, that can’t be true!”. I completely went into freeze response. It was like an out-of-body experience, while I was standing on the Edge of the Abyss, all around me was complete darkness. As I was shaking and crying, all I could continuously say was, “No, that can’t be true!”.

(The definition of Fight, Flight, Freeze or Fawn is the body’s natural physiological reaction to stressful events. It is activated by the perception of threat, quickly igniting the sympathetic nervous system and releasing hormones to reach the underlying goal of springing into fight, flight, freeze or fawn to decrease, end, or evade danger and to return to a state of calm and control.)

My OB/GYN’s office scheduled my first CT scan for three hours later and as my husband, who was thankfully with me at the appointment, brought me outside the office, I started throwing up while I talked to my sister on the phone telling her, “I have cervical cancer”.

At this point, I knew nothing about “my cancer”. Had it spread? Am I going to die? What stage am I? Will I see my girls graduate high school? Is it treatable? What is the chance that my cancer can be cured? What other tests and procedures do I need? How can I deal with that? I’m not the type of person that will be able to handle something like this.

The day after my diagnosis, there I was, sitting with all those thoughts, feelings, and emotions, not knowing what to do. I knew nothing anymore; I wasn’t even able to think. On this beautiful summer day, everything seemed to disappear into this deep fog surrounding me.

I, the psychotherapist, who always comes up with great treatment plans for all kinds of mental health problems my clients are dealing with, but who is now unable to even stop my own thoughts and worries. Wow, great job. I was disappointed in myself. I was disappointed in what my body had done to me by developing this cancer. And on top of that, I wasn’t even able to drag myself into a more positive state of mind. Hell, I could not even think one, clear thought.

So, when I wanted to cry, I cried. When I wanted to scream, I screamed. When I wanted to sleep, I slept.  When I wanted to talk, I talked. And I went on walks, a lot of quiet, long walks. At one point, I went on Google and gathered information about cervical cancer. I reminded myself about one of the things I tell my clients, “Information is on the other side of fear”. 

Then I realized that what is happening is grief. I’m grieving my cervical cancer diagnosis. I’m right in the middle of it and my psyche is doing what it’s supposed to do all on its own. 

We usually reserve the word, grief, for loss, secondary to death. Well, that’s just one form of grief. Grief is an adjustment to loss. When we get our cancer diagnosis, that is loss. Loss of potential quality of life, loss of certain physical functionality. It may even be the loss of time. At some point, everyone WILL go into grief. However, not everyone will go through the stages in a prescribed order, there is no linear and predictable pattern, and we often switch back and forth between the stages.

The classical, six stages of grief are simply tools to help us frame and identify what we may feel during our cervical cancer journey:

Denial: Feelings of avoidance, shock, fear, confusion. Believe that the diagnosis is somehow wrong and holding on to a different reality.

“I feel fine.” – “No, this can’t be happening to me.”

Anger: Feelings of frustration, anger, anxiety. Faced with the new reality, looking for someone/something else to fault, to leash out.

“Why me?” – “It’s not fair.” – “How can this happen to me.”

Bargaining: Struggling to find meaning. Seeking to get out of facing the new reality by promising something to change or to do differently or seeking for help through a higher power.

“I’ll do/give anything for a good outcome/a few more years.”

Depression / Sadness: Feelings of being overwhelmed, helpless, hopeless. Settling into sadness and unable to move forward.

“Live will never be the same…” – “What’s the point of going on?”

Acceptance: Feeling of exploring different options, a new plan in place, moving on. Embracing the new reality and finality of what has happened.

“I’m going to be ok.” – “I can fight it.” – “I may as well prepare for it.”

The more we give grief space to run its course, the more likely we are to have a better outcome. Sometimes we feel guilty for taking too long to grieve. NO, WE DON’T TAKE TOO LONG! Emotions work their way through us, don’t fight them, don’t rush them.

Years ago, I went to a lecture about grief and the professor added “Finding meaning/Purpose” as the last stage of grief in the circle and that stuck with me. Now, I always add that stage for my clients because I have experienced it myself.

Finding meaning/Purpose:

  • Help other people with the same diagnosis by sharing your story
  • Write a book
  • Pull back from work/toxic people
  • Join an organization
  • Smell/water flowers
  • Take a walk every day
  • See the beauty of life

For me personally, finding meaning/purpose just started in November 2021 (yup, not too long ago), when I decided to participate in one of Cervivor’s Creating Connections virtual meetups. I’ve always been pretty private about my cancer diagnosis. I was terrified about this cancer, I just wanted it to go away, I did not want to share anything with anyone other than my closest family. 

At this first meetup, I literally just listened to the other participants and there was so much hope, so much encouragement, and so many awesome ideas being shared for the upcoming Cervical Cancer Awareness Month (CCAM) in January, that I decided to participate in a second meetup. There, I started to introduce myself, shared a little bit of my story, and thought about ways to integrate some mental health ideas into CCAM.

Since then, I participated in Cervivor’s CCAM virtual activities and even spoke about self-care and mental health at the Cervivor Summit 2022. And today, here I am, continuing to find my meaning/ purpose. 

“Cancer cannot cripple love, it cannot shatter hope, it cannot conquer the spirt.” ~Author Unknown

Jessica Martin was born in Germany and holds a M.Sc. in Psychology. She moved to the USA in 2018 and was diagnosed with cervical adenocarcinoma 1B2 shortly after her move. Jessica is passionate about the mental health aspect for healing.

21 Years of Cervivorship

Today, we’re celebrating a special edition of #TealandWhiteTuesday. Our Founder and Chief Visionary, Tamika Felder is celebrating 21 years of Cervivorship!

Tamika was just 25 years old when she was diagnosed with cervical cancer on April 12, 2001. She endured a hysterectomy stripping her of her fertility, followed by chemotherapy, and radiation. Cervical cancer changed her life forever. 

In 2005, she started Tamika & Friends, Inc. a nonprofit dedicated to cervical cancer survivors and their friends and family. At the time there truly wasn’t any support for cancer survivors and the Internet was just getting off the ground. Tamika needed support. She found the more she told her story, the more it reached other women. Tamika wanted to help empower others to share their stories and that’s how Cervivor was born!

But Tamika didn’t stop there. She understood her calling of living her life beyond a cervical cancer diagnosis. Over the years, she has continued to transform the lives of each person impacted by a cervical cancer diagnosis. Tamika not only empowers them to use their voice, but she teaches them that their pain can have purpose, and they have the power to create change.  

Here are a few things she’s learned as she looks back on her experience with cancer:

  • I was a survivor from the onset of my diagnosis. Each day is survivorship. Sure, there are huge milestones. The first year, the magical number 5. But what matters is each day is another day from the one before. 
  • No matter your faith (or lack thereof) cancer is scary. And it’s okay to be scared. 
  • We all get by with a little help (or really a lot) when it comes to cancer from our friends/family. 
  • You won’t ever be the same. As with any traumatic experience you are forever changed.
  • Accepting that cancer has changed you and living in the “new normal” means that you can move forward. Even if it’s at a slower pace. 
  • Life is meant to be lived. And it doesn’t matter how much time. Sure, I’ve never be told that there is nothing left but what I’ve learned from others who have is that you have to live while you have life within you. 
  • Surviving cancer doesn’t mean you have to live in a bubble. It also doesn’t mean you have to become a daredevil. 
  • Surviving means living. 

Tamika has dedicated her life to cancer advocacy from eliminating the stigma of the human papillomavirus (HPV) (and being deemed a “Cancer Rebel” by Newsweek), to training patient advocates to share their stories, and to eliminating the healthcare disparities within communities of color.

“My greatest lesson is that life comes with an expiration date — from cancer or otherwise. It matters what we do with our time here. Life continues to surprise me. I was diagnosed with cancer when I was 25. I’ll be 47 this year and life is still surprising me in the best way possible. I don’t know how many years I have left, but what I can tell you is that I am going to live in a way that says I survived cancer.”

– Tamika Felder, Founder and Chief Visionary, Cervivor


This is only a small fraction of what Tamika has accomplished since she began her journey with cervical cancer and we couldn’t be more grateful for her resilience and leadership to create the community we now know as Cervivor. Thank you, Tamika!

Join us in celebrating Tamika’s 21 years of Cervivorship by:
1. Start living life for YOU. Don’t wait until something traumatic happens to start living life.
2. Vote for Becky’s video. People die of cancer. I’m blessed to still be here. 
3. Donate $21 to Cervivor.
4. Schedule your cervical cancer screening.
5. Vaccinate your children and protect them from HPV-related cancers.

One Year at Cervivor Taught Me…

Me working as a dental assistant during my first diagnosis.
During treatment for my metastatic recurrence.
The day of my very last chemo.

For those who don’t know me, allow me to introduce myself. My name is Morgan Newman, I’m a social worker, and I’m a Cervivor! I was diagnosed with endocervical adenocarcinoma at the age of 24 and then I was “hit” again with a metastatic recurrence to my lungs. Throughout my whole treatment, I wanted to do something more – to share my story, to advocate so others didn’t have to go through this horrible experience. I made little teal ribbons which eventually were teal and white ribbons to be more accurate and handed them out everywhere I went. I wanted everyone to know that cervical cancer existed because inside I felt all alone.

Right after I finished up my recurrence treatment, I stumbled across Cervivor due to a hashtag. I thought it was so clever to use “cervical” and “survivor.” The post mentioned a patient advocacy retreat and listed off the learning objectives of: learning the latest about HPV and cervical cancer, how to share your story, and connect with others who get it. This aligned with my values and what I wanted to accomplish. I signed up and fundraised my way to Delray Beach, Florida and the rest has been history.

I graduated Cervivor School in June of 2017 and went back home to Iowa to start working in my local area as a Cervivor Ambassador. From that stemmed SO many opportunities that have helped me grow. While attending my second Cervivor School in Cape Cod, I was recognized by the Cervivor organization and was awarded the title of Cervivor Champion. I couldn’t believe it! Me?!

For the next two years, I continued to nurture those existing community partnerships and kept on building new ones. It was then I was recognized with two more awards from two other organizations. I still couldn’t believe it and to this day I am so proud of how far I have come. This leads me into graduating from the University of Iowa with a Masters in Social Work and bound to a Code of Ethics to serve others. I was offered a position with the organization and now I really can’t believe it. I work for the organization that gave me my voice after cancer.

Cervivor Champion 2018
The Madison County Bras for the Cause Committee, Winterset, Iowa
Day at the capitol with ACSCAN

They say time flies when you’re having fun but really, where has the last year gone? My first year has been eye-opening yet so very rewarding. It has been a year of transition from a regular 9-5 career and volunteering in advocacy to a whole different world in the nonprofit sector.

Here are a few things I have learned along the way:

The mission is greater than just my own personal story. My passion for advocacy shifted from an individual level to an organizational mindset which is not an easy task (even for a trained social worker). These things can be presented as theories until we can actually put them into action. Sometimes we only understand something from our personal point of view and that causes us to only see a fraction of the bigger mission at hand. Our stories are powerful but they are so much more as a collective voice.

The work is hard. Even when you love your job, it can be mentally draining, exhausting, and at times…frustrating. Nonprofits are not like your regular 9-5, they come with some crazy hours including long days, nights, and weekends. 

Teamwork makes the dream work. We have a creative, experienced mind and an organized, in-the-making mind. New and old ideas are able to be balanced, polished, and made into a reality.

We are a small staff but fulfilling a BIG reach. Only two of us are employed and are doing the work that other nonprofits are capable of doing with a team of 10-12 people. We are so proud of the partnerships we have been able to build on a global scale with our grassroots advocacy.  

Communications are our #1 tool. I’m a generalist social worker trained in people in their environment and how systems work. I’m not someone who graduated with a specific communications or marketing degree but I’m willing to learn. I tend to bring various strengths from previous employment and life experiences to the table and it helps balance the work dynamic.

We are a community built by our community. Our community is diverse, rich in experience, and so supportive of each other. I’m really proud of all of our community members who have shared their stories, stepped up to advocate, and have extended their hands out to support others. Not to mention the individuals we’ve been able to reach thanks to our Comfort Care & Compassion Program.

Meet people where they’re at. Generally, everyone is doing the best they can at any given moment. It’s really that simple. Empathy and listening can go a long way. We see that firsthand at every Creating Connections support group meeting. 

Advocates and Volunteers are everything. If no one shares their story, how can we truly make a difference? How can we put new policies and systems into place so we can continue to prevent others from going through cervical cancer, from HPV-related cancers, or worse, dying from a preventable cancer? We have the ability to be a part of that process and we have been able to accomplish so much together already. There’s so much more work left to do and we’re just getting started. Want to get involved? Sign up to become a Partner in Purpose.

Funding is crucial. Philanthropy isn’t just about giving away money. It’s about changing the world. Right now, we have over 604,000 individuals worldwide being diagnosed with cervical cancer every year with 342,000 dying from cervical cancer. Communities of color are dying at disproportionate rates and we are committed to closing the gap in cervical cancer disparities. I encourage you to consider a one-time donation to Cervivor or to become a monthly donor. There’s still so much work left to be done and we could not do what we do without your support financially.

Growth and development are everything. Always come in with an open mind and be willing to learn. Don’t assume you know everything, you’re minimizing your maximum potential. Don’t be afraid to step outside of your comfort zone.  

We are far from perfect. In today’s fast-paced world, it’s insane to expect perfection (including towards yourself). You are bound to make mistakes and it’s okay. Acknowledge them, accept them, learn from them, and know we are always striving to do better than before.

Self-care is absolutely necessary to prevent burnout. Maintaining the motivation and stamina for this work with such a small team and the glaring reality of loss in our community can be difficult but the mission remains the most important thing to us and it keeps us going on a day-to-day basis. Having a passion for the cause can make it extremely difficult not to answer a message or email on your time off but it is absolutely necessary to prevent yourself from feeling exhausted, overwhelmed, emotional, and burnout. We are certainly following our 2022 campaign of Taking Care of You in 2022!

I’ve learned a lot in just a year’s time and I’m grateful for my job, to understand the work that is being done behind the scenes, to be able to sit on various advisory boards, research teams, to maintain and develop our programming, and to meet our partners and to hear their passion in the work that they do – it is all truly rewarding. Every time I am connected with someone in our community, every time I am connected to a family or friend honoring their loved one who has passed from cervical cancer, every time I see those statistics of diagnoses and cervical cancer disparities, I am reminded of just how important this work is. It keeps me humbled yet motivated for the next thing. I cannot wait to see what else the future holds for our Cervivor community and organization.

Morgan Newman, MSW, Outside of her Community Engagement Liaison position at Cervivor, you can find Morgan nurturing her relationships with local community partner organizations like the American Cancer Society Cancer Action Network (ACSCAN), the Iowa Cancer Consortium, and serving as a board member for Above and Beyond Cancer. Learn more about Morgan at Cervivor.org.

In Their Own Words: Five Cancer Research Sheroes

Whether referring to those who are influencing medical milestones in cancer research, the women who are thriving, or our loved ones who are now in our memories and forever in our hearts, Cervivor is proud to highlight the women who share their stories, rallying fists, and expertise that help us get closer to a cure.

And to be clear, this is not the pride that interferes with faith or recognition of a higher calling; This is the delight and fulfillment that keeps us here, fighting, sharing, educating and yelling from mountaintops that we can find a cure. So during this Women’s History Month, we want to acknowledge women (who, by the way make up nearly 70% of the entire world’s healthcare workforce), and shout out five women in cancer research and healthcare – in their own words. 

Padmanee Sharma, M.D., Ph.D., of the University of Texas MD Anderson Cancer Center: “I feel like we’re right on the cutting edge of discoveries that will create incredibly good outcomes for our patients with cancer … Finally, people can see that what we’ve been saying for all these years about immunotherapy is correct. But more important, we can now deliver the hope to patients that we’ve been working so hard for.” 

Rosalind Franklin, British chemist whose doctoral student took the infamous “Photo 51,” that first showed the iconic double helix of DNA in 1952: “ … Science and everyday life cannot and should not be separated. Science, for me, gives a partial explanation of life. In so far as it goes, it is based on fact, experience and experiment. Your theories are those which you and many other people find easiest and pleasantest to believe, but so far as I can see, they have no foundation other than they lead [cq] to a pleasanter view of life … ” Read more.

Dr Princess Nothemba Simelela, Assistant Director-General for Strategic Programmatic Priorities: Cervical Cancer Elimination: “I’m always an optimist. When you have a life and you have opportunities, we should strive to progress and share this enthusiasm with new communities. We must use this global commitment to elimination for national action. We can make a huge contribution to the lives of women who are less privileged and advantaged than we are. And move together towards a world free of cervical cancer … The most important message that we are communicating to everybody is to take this forward together, in one united push, and to maintain the momentum.” Read more.

Helen Coley Nauts—the daughter of Dr. William B. Coley, the Father of Cancer Immunotherapy (CRI) who helped advance her father’s work despite not having a college degree or scientific training: “You must be aware that no one else but me has so far made a detailed and painstaking study of all possible aspects of this form of treatment. Until such time as you may train a person with a more impressive medical background, I would suggest that you appoint me as a sort of registrar of information on the above mentioned Toxin clearing house.” Read more of Naut’s letters chronicling her advocacy toward a new path of cancer research in the 1950s.

Dr. Lillian L. Siu, Canadian oncologist, clinician scientist and recipient of the International Women Who Conquer Cancer Mentorship Award: “All of us have family members who are affected by the disease, by cancer. There’s always going to be a personal component to most oncologists that enter the field. You have to understand something about the heart, you have to understand something about the lungs … you almost have to be a jack of all trades. That’s what intrigues me about oncology and cancer medicine. And obviously, to make a big difference in cancer is going to be very rewarding because that’s going to save a lot of lives and make a lot of difference in people’s lives.” Watch more.

Learn more about our cervivors, who we, too salute, this month and share their stories with your circles! Have a story of your own? Share it with us!

A Lifetime of Cancer Prevention Gains – and Still Counting

In the 1970s, the White House made a concerted effort to research, educate and make gains around the prevention of cancer. President Nixon signed The National Cancer Act in 1971. State health departments began to receive grants to research ovarian cancer screenings in 1974. By 1979, the surgeon general published diet guidelines that aided in cancer prevention.

This was happening in my lifetime – well, some of it. I’m younger than I look (well, I’d like to think so), but I want to point out that while the study of cancer as an epidemic began in the 18th century, it has only been about 50 years that we’ve committed time, research, funds and our stories to help find a cure.

And there’s still work to do!

For Cervivor, cancer prevention is a daily endeavor. We host discussions, connect with cervical cancer patients and their families, and advocate for health policies. But in February, National Cancer Prevention Month, we go full force with our partners to shine a light on the need for more attention, research, and cures for the numerous cancer categories that continue to take away beautiful lives from our families, circles of friends, and networks.

Need some ideas on how to observe the month with Cervivor? We’ve got ideas but would love to hear yours too. Your voice matters in this community.

Tamika Felder and fellow “Cervivors”.

I’m passionate about using my voice to prevent not only cervical cancer but all types. Cancer in too many forms has touched my life, my parents’, immediate family, distant family, and people in my community. Cancer is a horrific thing, and I want to be a part of the movement. While we can’t prevent all cancers, cervical cancer has a first-line to prevention. I hope in the future we have more preventive ways to save people from all cancers, and I’m ecstatic to know that the White House continues to support and rally to “end cancer as we know it.” 

Earlier this month on February 2, 2022, President Biden committed to reducing the death rate from cancer by at least 50% over the next 25 years. YES! He published a statement of support vowing to improve the experience of people and their families living with and surviving cancer and eradicate the disease. This commitment further propels me to do this work with our members and our partners.

In the words of President Biden this month, “It’s bold.  It’s ambitious.  But it’s completely doable.”

Interested in learning more?

Tamika Felder is a 20-year cervical cancer survivor, an award-winning television producer, author, blogger, podcaster, mentor, motivational speaker, and nonprofit founder. By telling her story, Tamika inspired other women to start speaking about HPV and cervical cancer, which led to a network of survivors supporting each other and educating each other. From this network, Cervivor was born.

Black Women Take On Cervical Cancer

Teolita and her mom, Dr. Nina Rickenbacker Edwards

Teolita repeatedly told other women, “Do not let stigmas, lack of knowledge, or shame, prevent you from taking care of yourself. What I want all women to know is make sure you listen to your body and seek medical attention if something isn’t right.” She was a staunch believer that being assertive and advocating for yourself was half the battle around cervical cancer. Her mother, Nina, now carries on Teolita’s message. Teolita passed away in August 2019, after a five-year fight with stage 4 cervical cancer. 

Despite the fact that cervical cancer is preventable and treatable, the National Cancer Institute (NCI) estimated that 4,290 women would die of cervical cancer in the United States in 2021. As the country observes Black History Month, it is especially poignant to recognize the fact that Black women throughout the U.S. are dying from cervical cancer at a disproportionate rate, according to a January Human Rights Watch report entitled We Need Access.

Courtesy:

Getting to the root of health disparity 

This difference, linked with social, economical or environmental disadvantage, or health disparity, is posing a major concern for Black women in the state of Georgia, like Teolita who was never screened for cervical cancer, diagnosed at a later stage, and had a lower than five-year survival rate. 

While we at Cervivor are hellbent on focusing on surviving cervical cancer and thriving, we must look at the barriers, challenges and be laser-focused on the points that make some of us uncomfortable. Yes, we’re talking about economic, historic, and structural or institutional racism.

Here’s the breakdown of how Black women are impacted, disenfranchised, and disproportionately impacted: 

  • Healthcare affordability and access
  • Lack of comprehensive sexual health education
  • Historic mistreatment of people of color, particularly Black people, by the healthcare community

HRW women’s rights researcher Annerieke Daniel, said, “We really have to look at the result of racism and discrimination in the health care field and especially looking at gynecological care, which we know is rooted in abuse and exploitation of Black people, of Black women, of Black bodies.”

How can we make a meaningful difference?

  1. Help increase screening rates. Increasing screening rates could greatly reduce deaths from cervical cancer among Black women, Hispanic women, and other underrepresented communities. This requires the delivery of interventions directly to underserved women such as screenings based at accessible locations closer to their places of residence – such as via mobile vans and/or screening locations at local community centers instead of medical clinics. This can substantially lower cervical cancer mortality rates through early detection.
  2. Encourage HPV vaccination. (Watch and Share Chellese’s Video: https://youtu.be/2ORHPF6lcBk).
  3. Encourage clinical trial participation.A lack of racial and ethnic diversity in both cancer research and the healthcare workforce is one of the major factors contributing to cancer health disparities, according to the American Association of Cancer Research. Clinical trials lead to the development of new interventions and new drugs. They are used to make better clinical decisions, but there is often a significant underrepresentation in clinical trials by non-White races and ethnicities. With a focus on targeted therapies and precision medicine, representation in clinical trials is increasingly important so that research includes and reflects all groups. Where to start? Share links to www.clinicaltrials.gov – where clinical trials are listed and searchable by location, disease, medicine, etc.

Gladys knows all too well the struggle of health care challenges as a Black woman. Before she was diagnosed with stage one squamous cell carcinoma in 2013, she had to demand medical attention, she said.

“I went to have my annual physical exam and requested to have a Pap smear. The physician did not want to give me one, according to the guidelines, stating that I was not required to have a Pap smear,” said Gladys. “I insisted that I have one and reluctantly, he gave me one. A few days later, the physician called to tell me that I needed to see a gynecologist. My test came back abnormal. I made an appointment to see my gynecologist. He did an exam and told me I needed to see an oncologist. The oncologist said I had stage I cervical cancer.”

The advocacy and support required is the very reason Cervivor exists. It also exists to educate everyone – whether they are diagnosed or not, whether they know someone with cancer, or not, and no matter how they identify – about cervical cancer and its prevention.

Black women helping to change the course and legacy of cervical cancer

One of those lessons includes the impact of Henrietta Lacks whose cells were used in groundbreaking cancer research. Lacks, a Black woman, was 31 when she lost her battle with cervical cancer in 1951. Despite her passing, she posthumously helped advance cancer research. Her cells, referred to in the medical field after Lacks as “HeLa” cells were cultured from her tumors, survived and multiplied outside her body thus contributing to medical breakthroughs including the development of several treatments and vaccines, including the HPV vaccines. Despite the fact that doctors did not tell Lacks’ family that her cells were being cultured, the groundbreaking effort is a notable moment in Black history. 

Chellesse Parker, was diagnosed at 29 and years later is thriving. One thing she made sure of during her own journey, was to ensure her daughter is armed against cervical cancer despite the challenges facing Black women. 

“There are a lot of things I can’t protect her against but this is something that I can prevent,” she said.

Research tells us that when cervical cancer is detected and treated early enough, women have a 93 percent five-year survival rate. We like these numbers and must rid ourselves of the disparate stats harshly impacting Black women. Every woman deserves to be screened, to receive equitable treatment, and to know they have a fighting chance at being a Cervivor! Let’s fight collectively to protect, prevent and prevail!

Read more about Black women cervical cancer survivors who we honor, celebrate and appreciate. For more resources on cervical cancer, awareness, and representation connect with us on our social media platforms and Cervivor.org.

Caregiving: A Love Story

I wanted to take a moment to share my love letter to the caregivers in our lives, family or chosen, who perhaps unbeknownst to them, are the ones who give us the strength to put one foot in front of the other day after day.

Cervivor Erica’s husband JR, had talked with Cervivor here about his feelings of helplessness but through his unique caregiver lens you feel that special bond that forms when a family is faced with such a life alerting shift.

Love may conquer all but that doesn’t make it less challenging or painful for caregivers. I won’t pretend to know what it’s like for my caregiving team but my husband, my children, my parents, my brother and my village do more for me than they may ever know.

After my second surgery left me with no bladder or colon, my then fiancé became my nurse. In the hospital, he recorded the Wound Care nurse demonstrating bag changes. Then at home *he* was the one who changed my poop and pee bags for months. While I screamed in frustration trying to do it on my own, he just held me and reassured me that I could do it. And eventually I did.

He also sat beside me and held my hand each time my oncologist told us of a reoccurrence or metastasis. We’ve cried together, and apart. It is exhausting and overwhelming for both of us and that’s why I’m so grateful for him.

My children, who each moment provide me with love, are who I fight so hard for. My children may be adults but that does not make this any easier. This caregiving thing wasn’t suppose to happen until I became very old. I want nothing more than to continue to be here with them to share the big and small moments life brings.

My parents and my brother, along with my chosen family, constantly support me. They are there each time I am hospitalized, they take care of our pets when we cannot, they lend a shoulder to cry on, they summon prayer warriors in my name, they have raised an insane amount of awareness and dollars for causes I care about, they never miss an opportunity to celebrate with me and they love abundantly and without hesitation.

These people, whose love touches my heart so deeply, are MY HEROES. This life would not be worth fighting for if they were not here. You give selflessly; you are my joy, my peace and my strength.

Whomever you surround yourself with during the hard times, know that their love is unconditional but they struggle with watching someone they love suffer and they want more than anything to help get you to the other side of your pain. Keep the door open for those who feel like sunshine.

A beautiful quote that sums up caregiving to me is this one…

“When you go out into the world, watch for traffic, hold hands and stick together.”

Carol is an 11 year metastatic, recurrent cervical cancer thriver and Lead Cervivor Ambassador. She is also a double-ostomate and is passionate about dispelling stigmas as a cervical cancer survivor and ostomate.

Happiness Through Hair Loss

I have cancer and treatment is taking my hair. Do I have to suffer? Absolutely not! Personally, in the first few months of my cancer treatment, I surely would have liked to suffer by myself and not burden anyone by experiencing me bald and sickly. We are humans and I believe we are living to experience human emotion through connection. The saddest and most down I have felt in the past year of having cancer was when I felt alone and absent of connection. So, suffering at the hand of hair loss, in my opinion is avoidable. To share how I avoided the deep hurt from losing my hair, connect with me and join in on the journey of near waist length blond locks to bare, bald, and beautiful. 

Jodi with her long locks

I am a cosmetologist by trade, though I certainly prefer the title “Hair Artist.” I have been in the industry since 2010, but cut back to only styling friends and family after having the second of my two children. I entered the beauty industry to bring to surface my clients’ natural beauty, as well as highlight and enhance them. Hair has been my passion and always fascinated me from the way it grows to how we approach changing color and textures. I have had a handful of clients come to me after their chemo hair had grown out and I never thought that I would be experiencing what they had to endure. The strength they showed is completely magnified now that I am in the trenches that they had to wade through to get to that post grow out perm. 

Donation for Wigs for Kids

It just so happened that I was near my hometown and with my entire family when I was told that the three month post radiation/chemo scan showed residual and new spots of cancer and the new chemo I was about to start would take my hair. I sectioned my hair into eight small sections (it would have been twelve, but I was rocking an undercut), had my mom and sisters braid them, and each member of my family was able to cut one. I was very excited so the sadness that occurred took my breath away a little further with each tear. I felt the hurt in each of my family members now that my diagnosis was a lot more real to them more than my own hurt. I did not plan for heavy emotions, but I also didn’t plan for cancer. I went to a friend’s salon where she sculpted the remaining hair into a spunky alternative pixie and gave me a kick-ass pastel pink color job. I mailed the braids off to Wigs for Kids on the way. 

I stripped the color every week and replaced it with whatever I had in the color cache in my garage. From soft pink to day glow neon pink. I also took that time to document and demonstrate how devastating bad shampoo and hot showers were to fashion colors. Each color lost all of its shine within a shower or two, which made stripping them with direct dye removers very easy. After neon pink I had a pastel teal. Then I started chemo. I colored it again to deepen the teal to a truer variation to more accurately depict half of the colors for cervical cancer awareness. White was out of the question at this point. 

A week after that first infusion, I started seeing teal hair shed off on various surfaces. I was able to pull small amounts out when I ran my hands through it, but I had a request from a special niece to get to purple. I was scared to drag color through all of it, so I added a splash of violet to my bangs. Being able to play with my color and have that to look forward to made it easy to let it go. Possibly because by the time it started coming out, I was getting sick of the work it took to change color or keep it up.

I was in my pickup on the way to spend a weekend with my mom on a trail ride when running my hands through my hair resulted in a handful of fallout. I had another four hours on the road and keeping my hands off it was torture. I pick and I pull as I fidget, so it was incredibly difficult. We had family pictures planned a week from then and I really hoped to have hair for them. At one point on our trail ride, a friend rode up and rubbed her hand over my hair as she complimented it. All I saw was a huge chunk of my hair flying away in the wind and I kept a hat on after that. 

Jodi’s three year old showing his barber skills

When we got back from the ride, I decided it was time. I was tired of seeing my hair attach itself to everything but my head, and I didn’t think it would survive a much-needed washing before pictures. We headed to my sister’s house and she took photos while my husband and three year old took my brother’s terrible beard clippers to my head. It was a mess and a struggle and hilarious. I ended up pulling out the remaining strands and then going over it with his clippers. It was incredibly satisfying and this time, I didn’t feel sadness. I felt free. Our pictures turned out gorgeous and I am very happy to have done the chop before them.

That was five months ago, and I still catch myself wanting random cool hair trends I see on Instagram for an instant before I remember that one must first have hair. I do have two wigs that I was so graciously given by my infusion center’s recourse center. I rarely wear them because my head has always been so sensitive to pressure. I will endure them if an occasion calls for it, but honestly, I am much more comfortable bald. Wigs are not cheap, rightly so, as the time and talent it takes to create them is unfathomable. Some insurance does pick up the cost and there are many programs available to patients to be able to afford it.

There are more than a few options when it comes to picking out a wig. Synthetic wigs are a bit more affordable than human hair and have come leaps and bounds in appearance. Lace front and lace tops offer beautiful parts and hairlines. I prefer my lace top over the other any day, as it is much cooler and not nearly as heavy. The styles offered are infinite! I had a blast trying on some within my scope and at least one that was the furthest out of my style spectrum I could get. Curly, straight, long, short, any color under the sun, wigs are a blast! Now I don’t have to deal with the bulging of natural hair underneath. Small wins do add up, you know. 

I know plenty of people who would agree that losing their hair is a huge amount of stress and suffrage. It seems to grind mud into the never-ending wounding of cancer and treatment side effects. The vast majority of women see it as a direct hit to their femininity, especially those with a diagnosis that effects their reproductive system, such as cervical cancer. Many treatment options for cervical cancer leave the patient sterilized and slingshot into menopause, like myself, diagnosed at 29. There are incredible numbers of young women navigating this hell. But your perception of this hell 100% affects how terrible it actually is. I honestly had a lot of fun losing my hair! By taking it on my terms and in my own plans helped, and it takes so much time out of my showers and getting ready not having to worry about my mop. Not everyone has accessibility to products to change their hair every week before it falls out, but I guarantee if you ask your stylist to grab the products and give you a small lesson on how to apply, they would gladly set you up. If they don’t, reach out to me at [email protected]. I’ve got your back! 

Before I lost my hair, I heard about an organization called Bald is Beautiful and their mission to normalize women with hair loss sang to my heart. They have many resources to aid your path to being bare. I also highly recommend seeking out the resource center wherever you are receiving treatment. Local salons may also have a good idea about wig and hair replacement options in your area. I have not met a soul involved in the wig community that wasn’t completely ecstatic to help make your transition to being bald an easy one. So, whether you’re like me and bear the bare or you like to switch up your wig and hat styles every other day, know that you are gorgeous and absolutely killing it! Slay girl, slay!

Jodi slaying it

Jodi is a Cervivor community member who lives in North Dakota with her husband of five years and two small children and they spend most of their time outdoors. Jodi started a blog shortly after her diagnosis to bring awareness to the world of cervical cancer as well as share her progress with friends and family in one central location. Cervivor found their way into Jodi’s life in October 2021 during her second treatment regimen. She hopes to give other women in similar situations a sense of community by offering her story to bring to light that life with cervical cancer can have just as many highs as lows.     

Being a Support within the Cancer Community

It takes a village.

When someone you care about is dealing with cancer it is hard to know what to say or do. Cancer brings on all sorts of emotions and stressors from depression to anger, to concerns about finances. Remember, cancer goes well beyond just the patient and affects friends, family, coworkers and other acquaintances. Fact is cancer can make you feel pretty low! Although no cancer journey is the same, we can all benefit from support, and sometimes it takes a village. Here are some ways to reach out and support others fighting cancer.

Meals – One of the first things I think of when I want to help support a cancer patient or a family going through a major life event is organizing meals. It’s a nice way to make life easier when times get tough. Meals don’t have to be home-cooked; restaurant delivery, snacks and gift cards work too.

A 5k race to raise funds for Erin’s sister Amy

Financial Support – Let’s be real, cancer is expensive! Cancer means lots of medical bills and lost time at work. A quick and simple method to raise funds for someone with cancer is to use a crowd-funding platform. There are many to choose from and they only take a few minutes to set up. Crowd funding is a great way to tell your story and rally the troops. Financial support goes a long way, even if you don’t think you need it now, you might need it later and if you don’t, you can always pay it forward.

Emotional Support – People with cancer may feel stressed and overwhelmed. Asking for help is not easy for everyone, REACH OUT! Volunteer to decorate for the holidays, grocery shop, babysit kids, start a ride sharing program to get your friend/loved on to their appointments or simply schedule time to sit and visit. Believe it or not the simple gift of TIME means a whole lot!

Erin with her cancer bag and her husband

Another way to help someone cope with cancer is to offer encouragement. Encouraging a loved one to join a support group and to stay active can provide an emotional boost. Simple notes and cards of encouragement give a personal touch. Gift baskets, blankets, journals and books can bring comfort. A little joy and laughter provides a distraction from pain and anxiety about the future. As you can see, a little positivity goes a long way.

Patient Advocate – Advocacy is not for everyone but I’m sure we can all agree navigating insurance and the medical field can be a nightmare! Having someone on your side that acts as a patient advocate is essential. This person helps coordinate care, schedule appointments, speak with insurance companies, researches treatment options and can explain complex medical diagnoses. Whether this is a loved one, friend or professional with knowledge of the healthcare system having extra support helps the cancer patient feel empowered and reduces feelings of isolation.

You don’t have to have all the right answers or advice but being there and reaching out makes a difference. Everyone, especially cancer patients want to feel loved and cared for. So, no matter what you choose to give, know that your TIME is appreciated.

If you are a cancer patient or a caregiver, it’s okay to ask for help. We already know that cancer gave you super powers but believe me, having support makes those bad days manageable.

Mostly, cancer takes a village.

Erin is a Cervivor diagnosed in 2018. She was also a cancer caregiver to her sister who passed away in 2014 from neuroendocrine gastric carcinoma. Erin works in healthcare and is passionate about prevention and education. In her free time she enjoys art, running, spending time with her family and caring for her many farm animals. Learn more about Erin by reading her Cervivor story.

I Found Cervivor One Day After My Hysterectomy

On April 2, 2018 I was diagnosed with cervical cancer stage IB2. 

I remember thinking something was wrong. When I woke up in the middle of the night, I discovered I had been bleeding through the overnight protection I was using during my menstrual cycle. It was awful. I was so scared. I went through five pads in one night. I really thought I was going to bleed to death. This is when I knew something was not right. 

My last normal cervical cancer screening was in 2016 when I was living in Florida. I had missed my gynecological appointment in 2017 because I had recently moved to Charlotte, North Carolina. However, that was no excuse. I am usually very proactive with my cervical cancer screenings and I never miss an exam. 

I went to see my doctor on February 1, 2018 and directly told her about my menorrhagia. She seemed concerned. She immediately scheduled an ultrasound and a uterine biopsy. These both came back positive. I was feeling uneasy at this point. She suggested a hysterectomy. I felt extreme sadness. 

I felt alone even though my husband was right by my side praying for me, and with me. He said, if this surgery will make you feel better, let’s do it. My prayer to God was Psalm 41:3 “The Lord sustains him on his sickbed; in his illness you restore him to full health”. 

Even after my hysterectomy was scheduled I kept wondering, ‘why me?’ But I remembered God had a plan. So I prayed, “Lord, you are the Great Physician. Please heal me.” I truly believe in the power of prayer. My faith is very important to me and it means everything. I lean on Him in times of trouble. 

March 23, 2018 was the day! The preparation went really fast. All I remember is the beach ball smell from the oxygen mask. My surgery went well according to my doctor. I woke up feeling groggy from the medicine. I went immediately into menopause. My husband stayed with me overnight at the hospital.

Amy after surgery

After I was comfortably at home, I started researching and I searched Google using “Hysterectomy Recovery Time.” Along with side effects like menopause, and a whole long list of other things, I found Cervivor. This was one day after my hysterectomy! I found women speaking openly about their journey having cervical cancer and about hysterectomies. I was quite interested.

I kept reading different survivor stories. I could see myself in all of their stories. I did not virtually meet anyone as of yet, but looked on from afar. It took me a few months before I joined my first Creating Connections gathering. I called in from my mobile phone because I wasn’t as familiar with Zoom as I am now. And I was so nervous.

I remember Tamika saying, ‘I see a phone number without a name. Does this person want to introduce themselves?’ She repeated my number out loud and I said to myself, ‘oh,  that’s me!’. I spoke up and said, “I am a survivor of cervical cancer”. I think my voice cracked. I was so nervous. I also shared that I had just had surgery, went through six rounds of chemotherapy and 30 rounds of radiation.

I received so much love and kindness from these ladies. They understood me. They made me feel safe sharing what I had been through. I felt I like was not alone. Many of these women had also been through hysterectomies. I had found my people. My community. 

Amy ringing the bell

What I have learned is I am able to tell my story and I am not afraid to do so. I had reached out to my local TV station during Cervical Cancer Awareness Month in January 2020. This was something totally outside of my comfort zone. A few days passed and my nerves got the best of me. It was the day of the interview.

During the interview I shared my diagnoses and the fear I had when I first heard the words ‘cervical cancer’. The reporter asked what treatments I had and I informed her that I had chemotherapy, radiation and a hysterectomy. The latter made me really sad because I always wanted to be a mother and still long for it someday. I shared that even though previous pap tests had been normal, I had missed my 2017 screening. I believe if I had gone to my appointment, all of this would have been prevented. I talked about the importance of not missing your cervical cancer screenings. I ended with telling others that ‘you are not alone’. This interview played an important part in helping me share my story on a larger platform. The support and love from other Cervivor community members has been wonderful. They are truly like my new family. 

Some of my symptoms of cervical cancer were abnormal bleeding and heavy bleeding during menstruation. Also, bad cramps and clotting. I thought this was all normal, but as it progressed, I knew this was unusual. Today, I am four years cancer free! And I am a Cervivor advocate. Cervivor helped me find my voice, and I know the importance of making my survivorship count. I want women to know cervical cancer is preventable.

Amy Knox is a wife and patient advocate based in North Carolina, who was diagnosed with cervical cancer at age 44. She is passionate about reminding women to get screened for cervical cancer. She supports Cervivor and its mission in many ways, including being a social media influencer for the organization, as well using her faith to serve as a praying partner for those seeking that level of support. Learn more about Amy, by reading her Cervivor story here.

Caregivers Are Lifelines Near and Far

Caregivers are a lifeline for cancer patients. Without them, we can’t get to and from appointments and treatments, they provide warm meals or go to the store when you’re in desperate need of Gatorade. Your husband will drive to every fast food joint that you haven’t gone to in 20 years, just to try and find a hamburger that reminds you of your favorite place in Seattle, because it’s the only thing you want to eat during chemo. Caregivers aren’t always those who care for you physically, sometimes they’re thousands of miles away, but they always answer when you call or text, letting you cry “on their shoulder” or helping you through the hard times.

I’d like to give a shoutout to my main caregivers: My mom and dad, my husband Dan, and my best friend Jessica. I have so many other people who have showed up for me throughout all my treatments, but these were the ones who were my rock.


When I was first diagnosed in 2014, I was living in rural Montana and chose to have my care done at the University of Washington in Seattle, which is also where I had gone to school and lived after college. My husband and I traveled to Seattle often for appointments and so many of our friends hosted, fed, and drove us to appointments and surgeries. When I was back in Montana after a whirlwind of biopsy, IVF, and hysterectomy in Seattle, my parents came from Washington and spent the better part of six weeks driving me to six weekly chemo appointments and 25 radiation plus brachytherapy appointments. My father-in-law also came from California for a couple weeks and local friends also helped take me to appointments.


When I had my recurrence last June, those same Seattle friends came to my rescue, hosting me, Dan, and now our toddler, during the pandemic, and continued to feed us. My parents would drive two hours to watch our son during multiple procedures or full day appointments I had. When I had my tumor, kidney, and ovary removal surgery in September, our son stayed with my parents for a week while I was in the hospital. My husband worked from the hospital chair, not able to take time off as he was promoted to a different site across the country and had to finish out projects. Friends gave Dan a place to sleep and shower, and continued to feed us. When I got home, there were flowers and delicious treats sent from friends local and afar.


After the surgery I found out that they were unable to remove all the cancer and I would need to go through chemo again. My mom gave up winter in Mexico to spend it in snowy Montana taking care of me and my son for months while my husband was able to work and concentrate on his new job. My Montana friends drove me to my chemo appointments every 3 weeks, and so many of them supported me as my hair fell out, dropped off food, and would take my son for walks or help get him out of the house. My mom would make me bone broth from scratch and force me to drink Ensure on days I couldn’t eat. She kept our house clean and made us every meal.


After treatment we moved across the country for Dan’s job and we were excited to start a new adventure and put cancer behind us. Then in May I started having debilitating lower back and butt pain on the right side. My toes had started tingling at the end of February, and the tingling was moving through my foot. I ended up in the ER one night from the pain, and we did scan after scan to try and find the source. Nothing showed up on any of the scans, so I was diagnosed with radiation induced plexopathy, a rare side effect to radiation that happens to about 1% of radiation patients. Walking became harder and I noticed my right foot starting to drag a little. One morning I woke up, and my foot wouldn’t move, it was dangling off my leg like a fish on a pole. I could no longer drive as my foot wouldn’t push down on the pedals.


My best friend Jessica had planned to come out for a couple weeks to visit, and she ended up staying longer to help drive my son to and from Montessori and me to appointments. She is an occupational therapist, and guided me through working with a PT and finding things to help me get around the house and make sure I was safe. Jessica has always been there for me. She was the first one I called when I got engaged and pregnant. She was the first phone call when I found out I had cancer and she has always helped me advocate for my health and well being. I text her way too much throughout the day, and often use her as a therapist, even when I already have a therapist I talk to. She was the one who told me I needed to take time off of work and apply for short term disability as work became increasingly impossible through my pain, and soon with all my appointments that took up most of my day. When she saw what bad shape I was in, she rallied our friends to come out and help drive me to my 3-month everyday appointment plus more when my parents needed a break.


Speaking of my parents, my amazing parents suffered through Maryland’s hot and humid summer to take care of us again with my mom cooking and my dad driving me to all my appointments. I don’t think they expected needing to take care of their 36 year old daughter, but they dropped everything and came to Maryland whenever I called. 
And of course my husband Dan has been a huge support through all this. 

So much focus is put on the cancer patient during and after treatment, but caregivers are often forgotten about. I would often tell people that I had it “easy”. Even when I was feeling horrible, I could often try and sleep through it all. Dan would have to work all day then come home and take care of our son. Having my mom stay with us to take care of me and our son was a lifeline for us, but I know it still wasn’t easy on Dan and my mom. Caregivers are an integral part of a cancer patient’s life. Without their patience, understanding, and love, going through treatment would essentially be impossible. The next time you ask a cancer patient how they’re doing, be sure to take the time to ask how their caregiver is doing as well.

Gina is a mother, wife, friend, and two time cancer survivor. She was diagnosed with stage 3 cervical adenocarcinoma in situ at age 32. Not only does Gina hope to remind women to stay on top of pap smears and get the HPV vaccine, but she wants to raise awareness about side effects from cancer, both mental and physical, that happen after treatment ends.

In Memoriam

We have to talk about the other side of cervical cancer. The side of loss.

These are just some from our community and beyond who have died from cervical cancer. Their stories not only matter, they need to be perpetually in motion. Everything we do as an organization includes their footprint — their hope for a different future.

We met some of them from attending Cervivor Schools together, and others we got to know in virtual settings like Creating Connections and through our Facebook group I’m A Cervivor!. Some people come into our community seeking support from others who truly understand the burden of cervical cancer and others decide that patient advocacy is their calling.

It is truly our stories that connect us. These stories that we read and reread, often finding an intersection with so many of them. These stories continue to fuel us, inspire us and give us our wings, as Holly Lawson would often say.

Many of these women never hesitated in offering support to others. Each brought their own strength, humor and honesty to so many inside and outside of Cervivor. Like Grace, who found Cervivor in 2020 and was a huge presence within our virtual community. Many were also dedicated advocates who were shame resilient and knew they wanted to transform the narrative of cervical cancer.

Nothing about having or living with cervical cancer is easy and dying from it brings a great sadness that ripples through our community, leaving us devastated yet profoundly grateful for the experiences we shared. Together we find comfort and the strength to move forward with purpose.

The fact that our sisters, mothers, daughters, partners and friends continue to die from cervical cancer means our work and support is crucial. We will always remember those who sought connection, an understanding of their disease or the willingness to shine a light on cervical cancer.

Cervical cancer is the fourth most common cancer in women. In 2018, there were approximately 570,000 new cases of cervical cancer diagnosed globally and about 311,000 died from the disease. Cervivor wants to change these statistics.

By honoring these and so many other women, we make a promise to carry on their legacies in the work we do every day. Together. We will not stop.

Jeanette Acosta… We will not stop.

Grace Chantiam Bracci… We will not stop.

Laura Brennan… We will not stop.

Curtissa Clay… We will not stop.

Amanda Filkins… We will not stop.

Kristen Forbes… We will not stop.

Debbie Jane Forsyth… We will not stop.

Rebekah Elizabeth Fowler Griffin… We will not stop.

Dawn Fraga-Mejia… We will not stop.

Lisa Riebersal Moore… We will not stop.

Alissa Gores… We will not stop.

Elizabeth (Lizzi) Marie Haas… We will not stop.

Princess Ruth Joanna Howard… We will not stop.

Dr. Tessa Maria Klein… We will not stop.

Holly Latrelle Lawson… We will not stop.

Christine Lerch… We will not stop.

Heather Lyn Martin… We will not stop.

Angela Mckibben… We will not stop.

Catherine “Cat” Odderstol… We will not stop.

Iona Pierre… We will not stop.

Kelly Pozzoli… We will not stop.

Brittaini Qadri… We will not stop.

Nanette Quitanilla… We will not stop.

Teolita Rickenbacker… We will not stop.

Jillian Scalfani… We will not stop.

Erica Frazier Stum… We will not stop.

Brittany Wagner… We will not stop.

Mary Lucille Fuller Walker… We will not stop.

Becky Wallace… We will not stop.

Carneese J. Williams-Ackles… We will not stop.

If you would like to honor a loved one who has passed from cervical cancer, please fill out this form.

What Is Knowledge?

Knowledge is ________.  

You fill in the blank! 

You can always go with the first word that likely pops into your mind – POWER – but I encourage you to think outside the box a bit and go with something different…for now…

Here’s what comes up for me!

Knowledge is CONNECTION.

Anyone who is involved with Cervivor knows that connection is a huge part of “who we are.”  It is through our shared experiences that we connect via social media, Cervivor events, and relationships.  This connection is rooted not only in experience but also in the knowledge of those experiences and the important information that we come to learn because of it all.  Information about HPV, cervical cancer, prevention.  Information that, combined with connection, tends to result in “power by numbers” as a collective force of advocacy and change.  

Which leads me to my next word…

Knowledge is ACTION.

I’ve seen it happen a lot – and it’s so exciting to witness.  Once people have reliable and important information, they usually can’t help but DO something. Knowledge spurs action in some way or another.  Whether it is action for self by scheduling exams or staying on top of screening, action for others by encouraging friends and family or sharing information, or action for the cause and greater good by sharing personal stories as an advocate and impacting change in the HPV and cervical cancer space. At Cervivor, we see this continually in our patient advocates – working hard to take the information they have to “go and do” and make an impact in so many ways. 

Knowledge is PREVENTION.

Whether you’re a cervical cancer patient/survivor or not – being armed with important knowledge about HPV and cervical cancer can ultimately lead to prevention and help towards eliminating this disease that we now know is preventable.  Knowing what causes cervical cancer, being up-to-date on current screening guidelines and practices, being informed about vaccination all affect the impact that this disease can have.  When we’re informed, we can advocate for our own preventative health or that of a loved one.  When we’re informed, we know what to look for and ask for at the physician’s office.  When we’re informed, we can make decisions to reduce disease.  When we’re informed we know the importance of prevention.  

So now, I’ll circle back to the one “go-to” word that fills in that blank…

Knowledge is POWER.  

Knowledge does lead to connection, action, and prevention – but all of those add up to POWER.  Power that can save lives and impact change. As patient advocates, this informed power is a driving force of what we do, how we lead, and the change we make at Cervivor.  

I’ve seen this power firsthand at Cervivor School – one of our main outreach programs that educates and trains cervical cancer patients and survivors to become patient advocates.  It’s wonderful to witness so many at Cervivor School realize the impact they can have as we empower them with information and support. As patients and survivors, they realize the unique platform and influence they have. That combined with relevant information, their personal stories are perhaps the most potent force they hold.  

Your turn!  Knowledge is ___________.

Heather Banks is Cervivor’s Lead Advocacy Educator and recipient of the 2016 Cervivor Champion Award. As a 13-year cervical cancer survivor, she is an active advocate for HPV and cervical cancer awareness and prevention. Heather’s advocacy efforts have included testifying to the FDA in 2013 for co-testing efforts, speaking to government representatives in DC, and becoming a member of Cervivor’s Leadership Team. Heather lives in Indianapolis, Indiana where she is an Instructional Coach and Specialist at the elementary level. She loves spending time with her husband and two children; ages 16 and 13.

A Day in the Life: A Cervivor on Chemo

My name is Jodi Madsen. I am a thirty-year-old mother of two toddlers living with stage IIIC2 adenosquamos cell carcinoma of the cervix. I completed weekly chemo and daily external radiation for eight weeks in the spring of 2021 followed by four internal radiation sessions.

I started a new cocktail of chemotherapy in August 2021 consisting of Avastin, Carboplatin, and Paclitaxel every three weeks. I wanted to share what a day in the life of someone in active healing looks like, because I know how terrifying the word chemotherapy can be. 

November 1, 2021

10:00 p.m.

I take five tablets of 20 mg dexamethasone and try to settle in enough for my brain to allow me sleep before the medication kicks in and I am brimming with energy. I am loading steroids before the six-hour chemo infusion I have tomorrow. I then arrange my next dose on the nightstand and grab a book. My husband is snoring beside me in our queen bed at the hotel about ten minutes from my treatment center.

We made the seven hour drive to South Dakota from our home in northwestern North Dakota a few days prior to drop my toddlers off with my mom, then the seven hour drive from there to Nebraska Medicine in Omaha the day before. In an effort to forget that I had to miss Halloween with our two young boys, we got last minute tickets to Hamilton at The Orpheum. I was honestly still buzzing from the theater and probably wouldn’t have known if the steroids kicked in. Before I know it, the clock reads midnight. I set my alarm and revel in the wonderful news I was given via MyChart update from the CT scan taken earlier that day. Shrinkage and no new growth, all in barely comprehensible medical terms that would be translated to mostly English at my appointments in the morning. I stay up for at least another hour thanking everything I know as well as trying to wrap my head around what a cancer free life could possibly look like for the first time in seven months.

November 2, 2021

4:00 a.m.

I am gently awakened by my husband to take my next dose. I begrudgingly welcome the constant headache brought on by the steroids. Five more tabs down the hatch and back to sleep.

6:15 a.m.

Another alarm and small nudge. “Are we going out to breakfast before your 8:15 appointment? If so, we have to get moving.” Knowing roughly what time it is and the small amount of sleep I was able to get I quickly decide that we will eat at the continental breakfast downstairs. I had a book that I wanted to pass along to the resource center at the Buffet Cancer Center and bring the gal running the place, Terri, a caramel macchiato. There was an instant bond between us when she helped light a spark within me three weeks ago. She helped pick out some wigs that transformed me outside and in. I wish I could send everyone on a cancer journey to her, her light shines brightly far beyond her services and I am grateful to have stumbled upon her office because she is sincerely so wonderful. I tell everyone to seek out their treatment center’s recourse office or center, visiting adds a portion of pure happiness to my trips in for chemo. Also, obviously, they have incredible resources. 

7:50 a.m.

We enter Nebraska Medicine’s Buffet Cancer Center to find about 30 people waiting their turn to go through COVID prescreening. I believe we were met with a wait to calm myself and slow down the rush we were in. It is amazing what you see when you know The Universe is, in fact, conspiring for your success. In order for us to get over to see Terri, we had a lot of ground to cover quickly. We got through the screening at 8:03 a.m. and we were at Radiation Oncology in six minutes. Win! My nurse was at the reception desk and took us to get my vitals immediately. I hadn’t seen her or anyone in RadOnc since May and it was so great to catch up, even if she was very surprised to see my hair in a bob as opposed to the mid-back blonde locks she had last seen me wear. The surprise escalated when I told her it wasn’t mine and went on to update her on my current treatment status. She is one of those nurses that was, no question, destined for the job. My husband and I both grew an awesome relationship with her back in April when we saw her a few times a week for brachytherapy. 

8:37 a.m.

My Radiology Oncologist, Dr. Wahl, came in and answered my questions and touched on concerns about my scans. There were two lymph nodes that popped hot in my PET scan in July, one left lower cervical (in my neck) and the other along the right pelvic wall. Both showed considerable shrinkage. I knew this information already from reading MyChart, but hearing the words directly from an oncologist hit differently and we are overcome with happiness. He tells my husband and I that this is a fast reaction to chemo and they are very pleased with progress. I was granted the luxury of skipping the pelvic exam they had planned because my last one was about six weeks ago. Privacy is a luxury that I don’t really remember. Through having a cancer related to a reproductive system, telling the world about said cancer, and having kids-privacy is a mere memory.

10:15 a.m.

Checked in to the infusion center and we are taken back after about 15 minutes. My platelets have been low in the past and have been dancing on the line of being too low to receive my treatment the last two times. Since our home is 10 hours away from Omaha, I had blood tests done on the base at home Friday and sent down here to find out that my new practice of being mindful, intention, and concentrating energy on raising them has worked wonders and they are high! I did not have a urine test done at the base to make sure there is not protein present and my kidneys are still doing their job, so that is priority before I can get my chemo started.

11:30 a.m.

My nurse, Kelsi, comes in to ask me for more urine to send down to the lab as it was the tiniest amount short, like half a milliliter short, and gets my pretreatment drips ready. One antinausea tab, two Benadryl, more steroids, and a long term antinausea drip. As the half hour of pre-drugs is finishing up, we hear the Urine Analysis shows negative for protein and we are set to start chemo. First up, Avastin. She’s like the kicker chemo. Not necessarily the star of the show, but has been proven to aid the other two in doing their jobs. Nate has gone to grab us lunch from downstairs. The new responsibilities of the role he was flung into are executed wonderfully and more efficiently every trip we make. He arrives just before the lines start at the food court and has lunch to me before the next chemo switch. 

12:30 p.m.

My knight roamed the hospital halls and brought me a burger and salad that I flew through. In comes the star, Paclitaxel. Forgive me for this Benadryl induced comparison, but she is the Cady from Mean Girls in the pack. Shows promise of having good intention, and just being a cool chick. She’s here to help and is down to go the extra distance to get her job done, no matter how malicious the nature may be. Next thing you know there is a schoolwide “Come to Jesus” and she’s coincidently right there when you get hit by a bus… without hair. Did she push you? No one may ever know, but in the end, shows heart and progress no matter the crap side-effects that follows in her wake. All of the exhaustion from the rush of the day hits at once and I stash my computer and get some rest after about an hour of writing and catching my day up. 

4:15 p.m.

I take my time in returning to the world of consciousness as Nate does the same. Kelsi is about to switch out my chemo and start the last, Carboplatin. It is a half an hour drip and I spend the rest of my time at the infusion center scrolling and chatting my husband up while he does the same.

4:50 p.m.

My port is de-accessed and we are free to go! We head to a small shop to get overwhelmed browsing books and trinkets. I spend far too long staring at their wall of books before I realize I have a meeting in half an hour. We rush back to the hotel and make it just in time.

9:00 p.m.

I am settled into bed next to my snoring soulmate with a book that I have been working on finishing for entirely too long. Our suitcases and cooler are already packed up and tucked away and ready for the drive back to our boys. What a good set of days. So much laughter, some tears, an uncountable amount of relief sighs and internal celebration, great conversations, and a treatment plan that IS WORKING! The way my husband and I both approach even the smallest aspects of life has changed in about every way imaginable. We look at things through lenses we didn’t know existed a year ago, and this hardship has brought out the biggest beauties in the smallest moments. Tomorrow I will hug my kids and tell them that yes, Mommy is getting better. 

Jodi & Nate

Jodi is a Cervivor community member who lives in North Dakota with her husband of five years and two small children and they spend most of their time outdoors. Jodi started a blog shortly after her diagnosis to bring awareness to the world of cervical cancer as well as share her progress with friends and family in one central location. Cervivor found their way into Jodi’s life in October 2021 during her second treatment regimen. She hopes to give other women in similar situations a sense of community by offering her story to bring to light that life with cervical cancer can have just as many highs as lows.     

Taking Care of Your Mental Health

A cancer diagnosis rocks your entire world! No matter where you are in life, hearing that you have any cancer is an enormous hit. 

I was 26 years old in 2018 when I received my cancer diagnosis. I was working as a security officer and learning to cope with a new mental illness diagnosis from an unrelated event. I was struggling mentally, but I was also having some physical issues. I was noticing changes in my body. My periods got longer, the pain wouldn’t stop, and I went to the emergency room. The doctor told me I had an enlarged cervix during that visit and treated me with antibiotics. When I had my yearly pap test, they found a mass and wanted to do a biopsy. It was at that moment that I became full of anxiety. I was full of fear. All I heard was “cancer,” “hysterectomy,” and “no kids.” How would I manage? How would I tell my family? How would I FEEL? 

BEFORE CANCER

Before I was diagnosed with cancer, I didn’t handle my anxiety and depression with care. I tried to avoid conversations. It wasn’t until my cancer diagnosis that I realized how important mental health is as a part of our overall well-being! My father always told me that we could never make sound decisions without a clear mind. I used that as a basis for taking care of myself. I needed my mind clear to remember appointments, to remember medicines, to communicate with my team, the people around me, and so much more. I needed a clear mind to advocate for my care. 

AFTER CANCER

After my cancer diagnosis, I had to deal with many different feelings. The top three were anger, sadness, and guilt. I couldn’t wrap my head around having cancer and the future of no children. I felt like I had to make decisions quickly, although I talked it through with my parents. The talks of infertility, menopause, and treatment weeks made my head spin. I almost didn’t go through with the chemo and radiation. At some points, I felt like less than a woman because I could no longer naturally reproduce and I no longer functioned the way I used to. I had a lack of libido, so sex wasn’t so appealing to me. These were some of the things I found it hard to talk about, so at times, I suffered silently. 

SUPPORT & SELF-CARE

A support system is vital in finding mental/emotional stability before and after a cancer diagnosis. Most importantly, self-care is an excellent way to ensure that you find some ease in dealing with day-to-day routines. After realizing that my parents and fiancée would be there the whole way through, it eased my paranoia, and I felt empowered. I vowed to live life in the very moment and heed my tattoo to learn to accept the things I cannot change and have the courage to change the things I can, with wisdom to know the difference (Serenity prayer). 

Another way I coped before/after my diagnosis was meditation for at least 15 minutes each day. I affirmed that I would be healed, proclaimed that I would find peace, and declared that I would find a way to raise awareness and do what I can to teach people around me about how important it is to care for ourselves.

I saw a therapist at least twice a week a to talk and not see judgment. It was some of the best conversations I’ve ever had. My therapist helped me make sense of a lot of my emotions. She helped me see when I would misplace my anger and got me into journaling, which is another excellent way to cope and get things off your chest. 

Joining a support group also played a part in my mental health. I connected with other women who were feeling the same; they got it. I joined at least three or four different groups. They were all caring and positive. We shared our feelings, thoughts, and encouraged one another. Usually, I would not join groups like this, but they were safe spaces.  It made me feel good and at peace, but sometimes I would feel guilty that I complained so much, and as it seemed some women were enduring so much more than me. Now, I understand that I don’t have to write off my pain to validate someone else’s. Empathy is real!  I would advise you not to join or leave any support group that makes you feel bad or does not resonate with what you are looking for. 

Although cancer can make you feel exhausted, disabled, and empty, it can also make you feel empowered, tenacious, and beautiful. Remember that you are worth it. You shouldn’t be ashamed to seek mental health advice when your anxiety or stress feels too heavy. Some fun and creative ways to help relax would be arts, coloring books, and music. Talk it out or write it down, but it is never healthy to hold it in. Also, remember that it is OKAY NOT to BE OKAY! We often think that we must be strong for everyone around us, but we don’t have to pretend that we do not need a shoulder to lean on sometimes. 

Kyana is part of our Cervivor community and is a survivor of stage IIIB cervical cancer. Diagnosed at 26 years old, she found empowerment through Cervivor. Cervivor’s online groups taught her how to be more vocal about her care and spread awareness so that others are able to feel that same empowerment and advocate for themselves. Kyana shares her story in hopes that it will teach just one person about the importance of self-advocacy and preventative care, and to eliminate stigmas.

This movement needs you!

Every January, our community commits to bringing their global voices together in unison to talk about and bring awareness to cervical cancer and what it means to be a Cervivor.

It’s Cervical Cancer Awareness Month or CCAM for short. The CCAM Planning Committee for 2022 has once again been hard at work developing a campaign that will educate, uplift and inspire many to lend their voice to our mission of ending cervical cancer.

This year is all about Taking Care of You in 2022 and we’ve packed so much into our teal & white month. We’ll touch on topics like our mental health, empowering your patient advocacy voice, cancer disparities, expert speakers in various medical and wellness fields and lots more.

Some reasons why our work is so important.

  • In 2018, an estimated 570,000 people globally were diagnosed with cervical cancer and about 311,000 died from this disease.
  • The U.S. states with the highest rates of new cervical cancer cases are Arkansas, Delaware, Kansas, Kentucky, Louisiana, Mississippi, New Mexico, Tennessee, Texas and Wyoming.
  • Latina/Latinx populations have the highest incidence rates of cervical cancer.

Our mission is to make sure that this month becomes the impetus for conversations about cervical cancer screenings, prevention and taking care of survivors, thrivers and those facing a cervical cancer diagnosis.

This movement needs you!

  • Share your cervical cancer story with Cervivor because someone out there needs to hear your story.
  • Be engaged on Cervivor’s social media channels. Share, react and comment on our content on Facebook, Instagram, Twitter, TikTok and Pinterest. Don’t forget to share, share and share some more!
  • Join our social media chats, Zoom events and online gatherings! There will be opportunities to connect and share!

Lastly, make a promise to yourself to actively elevate the level of awareness of cervical cancer by not being quiet or sitting on the sidelines this month. This is your opportunity to be the light, to be the educated voice to carry Cervivor’s message of ending this disease that takes far too much from us.

There may still be a global pandemic and since cervical cancer doesn’t stop, neither will we. Join us and take care of YOU in 2022!

My Whole New World in the New Year

On December 30, 2020, my life did a loop-di-loop on the magic carpet of life. I was diagnosed with stage IIB cervical cancer. This diagnosis was quite honestly shocking as I happen to be one of those people who never put off a screening of any kind, even during COVID! What led to the diagnosis?

I had only one sign. I started bleeding, which I attributed to heavy lifting and moving furniture while decorating my house for Christmas. I made an appointment with my gynecologist for the very next day and I had an internal sonogram which showed a mass of some kind. She told me to be on the safe side we would set up an MRI which I went home to schedule during my Christmas vacation.

I scheduled the MRI for very early in the day so that I could also go for a mani/pedi and visit my daughter’s new home. As I sat in the pedi chair waiting to have my nails done, my phone rang. It was the gynecologist, which surprised me, but I figured it was the day before a holiday and she wanted to talk to me before the long weekend.

She definitely surprised me when she asked if I was somewhere private I could talk. I went out to my car in pedicure flip flops in the dead of winter to hear her tell me, “It is cancer.” I did not panic. My oldest daughter had had cervical cancer five years prior to this and it was thankfully caught early and was treated. I listened to my doctor tell me to take notes, and the first thing I grabbed was an envelope from a Christmas card, and I furiously wrote notes of oncologists’ names, words like ‘dysplasia’, ‘6 cm’, radiation, and chemo. I made the split second decision to go to the oncologist my daughter had been treated by and my gynecologist told me to stay put while she called him. She called me back to tell me he would meet me on a Zoom call so I quickly ran home for this meeting. Now this oncologist is pretty well known in the area for gynecological cancers and I knew him already so I felt comfortable until we started the meeting and he stoically uttered the words, “THIS IS VERY DIFFERENT THAN YOUR DAUGHTER!”

Phyllis with her daughters

In a matter of minutes on the second to the last day of the year, I had scheduled all my appointments with oncology, hematology and radiology. My biopsy and D&C were scheduled for a week later until my world again turned upside down.

My oncologist told me I had a rare, aggressive tumor and they wanted to switch my treatment plan to try and shrink the tumor in preparation for surgery. Of course it would be me with the rare tumor that only accounts for 5% of cervical cancer diagnoses. I know, I’m an overachiever!

I was set up to begin a Taxol/Carboplatin protocol and with cold-capping to save my hair. I went through the nine weeks like a trooper and was so happy as I suffered only minimal side effects. I was able to continue teaching (remotely because of COVID) and I stayed positive and ready for my battle. But it was short lived.

The tumor indeed shrunk, but not enough so back to the drawing board of the traditional treatment plan. I went through six rounds of Cisplatin (ironically I did lose my hair but I was advised not to cold cap this time) concurrent with radiation and Brachytherapy. Again, the tumor shrunk, but not enough which leads me to my current status — LIVING WITH CANCER. This in itself is a difficult thing to wrap ones’ head around.

Phyllis sporting a cold cap during chemotherapy treatment

In September, I began a course of Topotecan and Cisplatin. Since this would be administered for three consecutive days every 21 days, I decided to take a leave from work and the doctor highly advised it! I am so glad I am off! The side effects are not fun! I have seven days of intense pain and constipation but I am trying to deal with it by wearing a smile and a big win for me was that my latest CT scan revealed a lot of shrinkage!

My biggest lesson learned: YOU CANNOT PLAN WITH CANCER! Things are not what they seem and plans constantly change. All I know in this journey is that it’s important to go with the flow and STAY HAPPY!

Phyllis Adams is part of our Cervivor community and a proud Jersey girl. She is an active member of our Facebook groups Survivor Slimdown and I’m A Cervivor!. Thank you for sharing your story, Phyllis!

Miss USA Advocates for Cervical Cancer Awareness

We must talk about cervical cancer. In our community, you’ll hear stories of loss of fertility, recurrences, ostomies and so many other secondary issues because of a cervical cancer diagnosis. You’ll also hear the stories of those who are no longer with us, their stories still making an impact to prevent others from having to endure such a devastating disease. Cervivor empowers and elevates the stories of cervical cancer survivors everywhere to shine a bright light on what cervical cancer is and who it impacts.

Miss USA has been a sought-after and highly respected beauty pageant since 1952. Their mission is to reimagine pageantry, to encourage the contestants to use their voice and to give back with charitable work. Cervivor’s mission is on par. We give those diagnosed with cervical cancer a patient advocacy voice, empowering them to raise much-needed awareness for a cancer so misunderstood.

Photo from Elle’s Instagram: @officialellesmith

Elle Smith has been crowned the 2021 Miss USA title BUT that’s not all…She’s dedicating part of her platform to cervical cancer awareness! Not many people have chosen a platform with a history of stigma like cervical cancer has had but Elle has a deeper, more personal connection.

Elle lost her grandmother in 2015 to the devastating disease we know as cervical cancer. Someone she cared for and loved so deeply was gone and she knew she couldn’t just sit back. Elle wanted to honor her grandmother by making her grandmother’s story matter.

Elle’s decision matters so deeply to the Cervivor community. No one should have to watch their loved ones die from a preventable cancer. There were tears of joy and words of encouragement from so many in our community.

Photo from Elle’s Instagram: @officialellesmith

Maria Franklin shared, “Watching Miss Universe as every good Puerto Rican and pulling for Puerto Rico of course but, did you guys hear Miss USA talk about #cervicalcancer and the importance of gynecological health!!! Loved that she used this platform for it!!!”

“This is fantastic! We need more women helping us raise awareness!” said Tracy Jimenez.

“What a monumental moment to have cervical cancer awareness on a global platform. As a 20-year cervical cancer survivor and the founder of Cervivor, this is exactly the type of visibility that is needed to help us end cervical cancer. Thank you, Miss USA Elle Smith.” shared Cervivor Founder, Tamika Felder.

We are supporting Miss USA and are forever grateful that she is using her platform to help end cervical cancer. We encourage staying up-to-date on the current screening guidelines. And don’t forget to join us in January for Cervical Cancer Awareness Month (CCAM).

Three French Hens, Two Cancer Patients and One Love

When my husband Keith and I married on December 30, 2010, we embraced the meaning of the three French hens as Faith, Hope and Love. I knew my life was going to change when we said our ‘I dos’ but exactly how only God held the answers. 

Amy & Keith

I remember when we first met. His smile had me mesmerized as we cut a rug to a 90’s song at a local restaurant turned dance club. His face lit up as we got to know one another. I felt a warmth come over me as he reminded me of home. He was so adorable. I said to myself “I could see myself marring him.”

We both shared our love of faith on our first date. We are both believers in Christ. This is the most important quality in a man to me. We conversed about me becoming a Christian in 2002 and he being raised in a Christian home and we smiled. He shared how he grew up going to church in a small town when he was younger and that attending Sunday service and worshiping our Lord and Savior were two spiritual activities we have in common. He also shared how his big family is so important to him. His older sister loved to cook a big dinner after church on Sundays for his family of five. Our relationship grew on Faith, Hope and Love. 

Eight years after we got married, I was diagnosed with cervical cancer stage 1B2.  I had a hysterectomy, radiation and chemotherapy. I felt defeated. I was fatigued all the time, especially after my first round of chemotherapy. Keith was right there by my side encouraging me and praying for me everyday. He was my hope and not only that he became my caregiver. During this time, he would take me to my oncology appointments which were 30 minutes away from home. I felt so grateful and safe. I really never understood when people spoke about “their person” or my “ride or die”. Well, now I do. I don’t know what I would have done without him. 

The following year, we received some more heartbreaking news. Keith was diagnosed with multiple myeloma.

We nervously waited in the emergency exam room. The doctor came in and said, “Mr. Knox it looks like you have some cancerous lesions.” We were both in shock. I seriously couldn’t believe we were going down this road again. I exhaled.

Then Keith’s journey began in October 2018 when he went through a long and difficult stem cell transplant. This is a procedure in which a patient receives healthy stem cells to replace their own. He was in the hospital for 27 days. He was very weak, had no strength and lost 32 pounds. He was given a large dose of chemotherapy which made his hair fall out. I was at the hospital by his side day and night, giving him hope by praying for him and helping him with his basic needs like walking, getting dressed and eating. I will be honest, some days were really hard. There were long nights and days where my husband wouldn’t eat, wouldn’t walk and somedays he felt like giving up. 

Then God stepped in. The Physicians Assistant, Ami, who is part of the oncology team asked Keith if he wanted to go home today. He answered with a yes and we were beyond happy!

Survivor & Cervivor

Today I continue as his caregiver, assisting with his medication and chemotherapy daily. He also has neuropathy in his feet and legs. Neuropathy is weakness or numbness and pain from nerve damage. I rub his feet with pain reliving creams. Some days are better than others. But every day is a gift that I am with him. 

As a patient and caregiver I too have days where I need help. My husband helps me when I don’t feel like cooking. If I need help with doing laundry or vacuuming the house, he is the first person to say, “I got you babe” and I am the first to say, “Thank you and I love you.” This relationship has taught me it’s ok to ask for help and I try not to put pressure on myself to get everything done. It’s okay to have a day where all you do is rest or read a book. There are days both of us don’t feel like doing a dang thing. What I have learned is to be in tune to or with your partner whether it be for better or for worse!  

Amy is a wife and patient advocate based in North Carolina, who was diagnosed with cervical cancer at age 44. She is passionate about reminding women to get screened for cervical cancer. She supports Cervivor and its mission in many ways, including being a social media influencer for the organization, as well using her faith to serve as a praying partner for those seeking that level of support. Learn more about Amy by reading her Cervivor story here. 

Behind the Scenes of the Comfort Care & Compassion Program

After navigating a global pandemic in 2020, we knew support was needed now more than ever. The Comfort Care & Compassion Program was developed and implemented as the newest addition in Cervivor’s 2021 programming. The CCC Program provides those impacted by cervical cancer with a little extra something to help carry them through the day.

The program has three components:
1) A choice of cards with a handwritten message from survivors in our community to send a little extra support or to help celebrate exciting milestones.
2) A tote bag to support individuals facing a new or recurrent diagnosis and in active treatment for cervical cancer.
3) A custom Cervivor lapel pin to celebrate benchmark milestones.

The program was developed by a team of cervical cancer survivors who volunteered numerous hours. Get to know them in this behind-the-scenes look at The Comfort Care and Compassion Program.

Meet Emily

Emily Hoffman, a cervical cancer survivor, 2016 Cervivor School graduate, and Cervivor Ambassador located in Iowa is our Comfort Care & Compassion Card Chair. She says, “To me, the CCC Card Program means support so that no one in the Cervivor community feels alone. The greeting cards are a way for us to celebrate the milestones together and uplift each other in difficult times.” 

Emily leaves a personal touch by handwriting, stamping, and drawing on each card.

Emily adds, “I am proud of the success of the CCC Card Program so far. I am also thrilled to know that the cards mean as much to the recipients as they do to me when I write them. The program has already brought us closer as a community, as the cards remind us that we can lean on each other.”

Meet Caroline

Caroline Swenson, a cervical cancer survivor, 2019 Cervivor School graduate, and Cervivor Ambassador located in Wisconsin, serves as the Comfort Care & Compassion Tote Bag Chair. She expresses, “I remember very clearly when I received my cervical cancer diagnosis. I was stunned and though I was surrounded by family and friends, I still felt alone. This is why I love the Comfort, Care, and Compassion Program powered by Cervivor! Being able to reach out on behalf of our community in a way that offers those on their journey a special little nudge, a nurturing gift, that says, “Hey, we are sorry you are going through this. You’ve got this and we are here to support you.” fills my cup.”

Meet Karen

Karen North, a cervical cancer survivor, 2019 Cervivor School graduate, and Cervivor Ambassador located in Missouri, serves as a community admin. She spends a lot of time getting to know each and every one of our community members and Karen helps with referring members to receive something special from the CCC Program. Karen says, “Being an RN, I am passionate about knowing you are cared for. The Comfort Care & Compassion Program gives me the opportunity to give all 3 aspects of comfort, care, and compassion to those that might be feeling lost, alone, stressed, you name it. I enjoy seeing how our CCC program personally impacts our community.”

Get Involved

We have some truly incredible community partners that have volunteered to write and decorate cards for our community. Emily talks about what it felt like opening the box of cards, “When I first saw the greeting cards, I was blown away by the thoughtfulness put into them. The cards were beautiful. Each one contained an encouraging message that was handwritten in bright colors. I unexpectedly started to tear up as I read through them! I was so moved by the support of complete strangers for our community. Even though they weren’t addressed to me, I felt like their encouraging words were meant for me. I felt loved and uplifted. So I’m excited to send these cards to our community over the coming months so that we all can feel the love and support they bring.” 

Everybody has their own story and own diagnosis but there is a community of cervical cancer patients, survivors, and thrivers who are here to support you in any way they can because they “get it.”

If you are interested in supporting this program please consider donating to Cervivor today. Volunteers may contact us for card or bag donations at [email protected]. And if you wish to give or receive a gift of comfort, click on the link here.

Caregivers Are Priceless

Celebrated every November, National Family Caregivers Month, is an opportunity to honor the caregivers in our lives whether they are family or chosen family.

Hear from the Cervivor community as they share beautiful messages of love and appreciation for the people and other resources that have given them strength, support, and kindness.

Kyana

My caregiver/fiancé. He has been there for me through so many different situations. We’ve had bumps in the road but love prevails. He fed me, bathed me, clothed me when I was too weak and gives hugs all the time. Most of all, he spoke life into me by encouraging and motivating me every single day.

Tammy

My husband has been amazing through this whole thing. Spoils me rotten with anything I need, comes with me to all of my appointments, asks questions I wouldn’t even think to ask, has voluntarily taken over taxi duty for our two teenagers, and he bought me a fancy bidet toilet seat as a “Let’s kick cancer’s ass” gift. What more can I ask for??? So incredibly grateful for him.

Selena

“Caregiving often calls us to lean into love we didn’t know possible.” ~ Tia Walker

Having been on both sides – patient vs caregiver, I’ve found I prefer to give as receiving can be difficult at times. Being overwhelmed with generosity can feel difficult to live up to.

Victoria

My hubby has been by my side every minute of every appointment, side effect, bad day, etc. This was him holding my hand while waiting for a brachy appointment. He’s my rock. My comforter. My best friend. And, my caregiver. I know it’s not easy for him (I myself have been a caregiver to my dad and my mom), and it’s definitely not easy for him to watch the person he vowed to love forever to be in pain. To suffer. To possibly face a future without them.

Karen

This is my baby girl. When I got diagnosed with stage 3B cervical cancer four years ago, she sold her home, packed her five children up and moved in with me. I’ve also had to have a surgery due to cancer in my lung and because the radiation had deteriorated my bones from my belly button down, I had a total hip and knee replacement.

Multiple strokes kept me in the hospital but she’s been by my side from the day that I heard, ‘you have cancer’. We get on each other’s nerves once in awhile but that’s what mothers and daughters do and at the end of the day I know she’s got my back.

She is also an amazing caregiver to her five children; a set of six year old twin girls, her seven year old boy, an 11 year old son with Asperger’s and ADHD, who was born with no rectum and had a colostomy bag for quite a few years, and a soon-to-be 13 year old daughter. I always say I’m very blessed and our house is always filled with love.

Patti

My caregiver. My support. My love.

He held my hand throughout the journey and he hasn’t let go.

Lisa

My hubby was always a bit of a grumpy guy but this last year he has turned into a big old softy. The day after my radical hysterectomy he, without being asked, brushed my hair for the first time ever. He works 12 hours from our home and took off a month after surgery to look after me.

This November, Cervivor has partnered with Caregiver Action Network for their national campaign #CaregiverAnd. It’s an opportunity to celebrate the identities and passions that enrich your life. Check out Caregiver Action Network’s Family Caregiver Toolbox. It’s full of great resources for every topic!

Being A Warrior Is In My Blood

My name Kristine Bahe-Sprigler. I am half Native American and half Caucasian. When I was diagnosed with cervical cancer I had to lean on my heritage for my source of strength. It was a great reminder of the those that came before me and what it meant to have their blood run through mine.

I am from the “Zuni” Clan which is my father’s mother’s clan and “The Water Flow Together” Clan is my paternal grandfather’s clan. This is what defines me as Navajo and is determined from matrilineality.

Navajo women are the matriarch and we (all Navajo’s) introduce ourselves by clan which identifies and defines relationships between individuals and families. When you meet someone with one or more of your same clan, you become related by clan. You can also tell a region by someone’s clan.

The Navajo Nation occupies portions of Southeastern Utah, Northeastern Arizona, and Northwestern New Mexico – the capital being Window Rock, AZ.

You can find hogans on the reservation, which are primarily built from logs and mud. The door always faces East to welcome the sun each morning for wealth and good fortune. Some are used for dwellings, but others are used for ceremonial purposes and regarded as sacred.

My grandfather, Roy Begay, was part of the original 29 U.S. Marines that were recruited and served as a Navajo Code Talker in World War II. He proudly served his country and is a recipient of Congressional Medal of Honor.

My mother is of Irish, English and German heritage. She comes from a very creative line. My grandfather was a musician and played in the U.S. Army band traveling around the bases and performing. He came from a very musical family. I learned to love music by watching my grandfather play while growing up. I chose to play alto sax and piano starting in the fifth grade and played in Jazz and marching bands. My grandmother was a professional dancer traveling between New York and Cuba performing with a partner until she chose to stop dancing to start a family.

My great-great grandfather on my mothers side, George Washington Taggart, was part of the journey of the Mormon Battalion, which was comprised of about 500 Latter-Day Saints that joined the U.S. Army during the Mexican American war, which made several contributions to the settlement of the American West.

I believe my strength comes from both sides of my family. We come from a long line of warriors. I was diagnosed with stage I cervical cancer in 2012 when I was 34 years old to which I received a radical hysterectomy. The decisions leading to that were difficult and heart wrenching as I wasn’t sure our family was complete. I suffered from anxiety and depression for a few years after. Being diagnosed with cancer is difficult – it teaches you humility and vulnerability all the while showing you what strength you possess even years later.

November is Native American Heritage Month, a month dedicated to paying tribute to the ancestry and traditions of Native Americans. I would be remiss if I didn’t mention the disparities American Indian and Alaska Native women are facing with cervical cancer. According to the American Indian Cancer Foundation, American Indian and Alaska Native women are nearly twice as likely to develop cervical cancer compared to white women and four times as likely to die from it.

Those are statistics I would like to help change. Cervical cancer is preventable. I share my story to remind you to be proactive with your health. Make those uncomfortable gynecologist/prevention visits and ask about the HPV vaccination for your child(ren).

At the age of 34, Kristine was diagnosed with stage I squamous cell carcinoma. She has found healing and purpose in sharing her story and in advocacy. After her dark and lonely experience with cancer, her goal was and continues to be to empower others to be shame resilient. She became a Cervivor Ambassador after attending Cervivor School in 2016 and she is currently in her 9th year of survivorship with no evidence of disease.

We Told Cancer to Go Fly a Kite!

On Saturday, the cancer community came together to share a unified message: Cancer Can Go Fly a Kite! And it was nothing short of amazing! There were so many beautiful photos, videos, and virtual kites shared. It reminded us of one very important message, we are always stronger together. 

Read the Kickoff Message from Our Founder, Tamika Felder.

Cancer Can Go Fly a Kite!

Cancer Screenings: We want others to understand, the global pandemic put a dramatic halt on cancer screening rates and cancer diagnoses. Though rates are climbing back up, they are still not at pre-pandemic levels and it’s a problem. We know that prevention and early detection saves lives.

Have you scheduled your cancer screenings yet? Stay up-to-date on age and risk appropriate guidelines by speaking with your doctor and utilizing the American Cancer Society’s Quick Reference Guide.

Caregivers: Support those who support you. Caregivers deal with so much when a loved one is diagnosed with cancer that they often forget they need support too. We are so grateful for the caregivers in our community.

Community: Cancer can feel isolating and it can make you feel lonely but when you find your community, it can make things feel less scary. The Fort Independence Warriors in New York know all about the word community. They showed up loud and proud for #CCGFAK.

Cancer Disparities: Despite all of the improvements in technology and treatment, cancer disparities are still happening. We will continue to raise awareness on cancer disparities and share our stories to make a difference.

Global Outreach: Cancer impacts us all across the globe. We have patient advocates speaking up in Kenya, Honduras, and Saint Lucia (and many more countries) because…

Cancer remains to be the third leading cause of death after infectious and cardiovascular diseases in Kenya. Milicent and Sally use their voices to make a difference.

“So that everyone knows the importance of HPV vaccination. And to our Kenyan government to know the importance of cancer survivors – when survivors share their journey they give hope to newly diagnosed patients.” – Milicent, Kenya

“Cancer made me lose some parts of my body. Let it go fly a kite. #MakingCancerPay” – Sally, Kenya

And to change the statistics for the 56,000 women in Latin America and the Caribbean that are diagnosed with cervical cancer every year like Kadiana and Karla.

“Cancer has changed my life physically, emotionally and mentally. Although I’ve learnt to accept that I am fat and forgetful with stiff joints and many scars, cancer can go fly a kite because I am also more courageous, resilient and have a profound respect for life.” – Kadiana, Saint Lucia

“I want everyone to be able to enjoy each day, people, pets, and life. Cancer can go fly a kite and let us all live freely and healthy.” – Karla, Honduras

Survivorship: The good news is cancer deaths have declined dramatically but survivorship and quality of life matters. The number of cancer survivors is expected to increase by 31%, to 20.3 million, by 2026 and it is expected that 2 out of 3 Americans diagnosed with cancer will live at least 5 years after diagnosis.

Clinical Trials: Educating others about clinical trials because only 5% of adults with cancer will participate in them. Clinical trials are a great way to help others and gain access to the latest treatment options before they are available to everyone else.

Prevention Tips: We know prevention and early detection saves lives but what can we do to help prevent cancer? We gathered a list of helpful tips to share!

To Honor: We took the time to remember and honor those in our community who are no longer able to tell their stories. We carry their memories with us every day and find new ways to honor them.

Bernie Brennan flew a kite a kite in Ireland for her daughter, Laura Brennan. Laura was a Cervivor Ambassador and sadly, died from cervical cancer in 2019. While she was alive, she served as a Cervivor Ambassador and advocated for HPV vaccination and cancer prevention. During her short time with us, Laura made a massive impact to increase HPV vaccinations. We thank the Brennan family for sharing this day to honor Laura.

Thank You

A huge thank you to Rubius Therapeutics for sponsoring our Cancer Can Go Fly a Kite event and for continuing to find new and improved treatments for HPV-related cancers. To find out more, visit their website: https://rubiustrials.com/hpv-cancers/.

Today We Fly Kites!

Let’s say it together now: CANCER SUCKS!

Today we fly kites. Cancer Can Go Fly a Kite is a day dedicated to cancer awareness and prevention! 

It’s about making our voices heard. Loud and clear.

It’s about celebrating the little stuff and supporting each other. You might even learn a thing or two, too.

No kite? No problem!

Save these graphics below to use on your social media platforms along with the hashtags #Cervivor #CCGFAK #CancerFlyaKite.

Don’t forget to tag us in your posts on Facebook and in your photos on Instagram and Twitter. 

Virtual Kite For Facebook and Instagram:

Virtual Kite for Twitter:

“Cancer Can Go Fly a Kite” kites are now available for purchase in the Cervivor Shop.

Cancer Can Go Fly a Kite!

Cancer Can Go Fly a Kite is a virtual cancer awareness event to do just that – to tell people ‘why’ cancer sucks. But it’s so much more than that.

A cancer diagnosis sucks. 
Cancer treatment sucks. 
The aftermath of cancer sucks. 
And losing friends and loved ones sucks too.

It’s also a chance to celebrate milestones no matter where you are in your cancer experience. 

Did you make it out of bed this morning? Celebrate it. 
Did you have a day or two without experiencing post treatment side effects? Celebrate it. 
Have you made it to a benchmark milestone? Let’s celebrate it together!

Do it for yourself or include your friends, family, pets, or even a group of coworkers. There’s no shame in this kite flying game!

This is an opportunity for caregivers, care team members, and community partners to show support and join forces in cancer awareness and prevention so that others do not have to stand where their loved ones, patients, and colleagues once were.

This event is in support of all cancers, not just cervical cancer. Join us in raising awareness on November 13th. 

We would like to thank our generous sponsors, Rubius Therapeutics for helping make this event happen.

Click here to order your kite. If you would like to participate but are unable to purchase a kite, please reach out to us at [email protected]. 

We look forward to your participation.

Surviving Both Breast & Cervical Cancer

1 in 8 women are diagnosed with breast cancer in their lifetime and it remains to be the most common cancer amongst women in the U.S. The death rates from breast cancer have reduced due to advancements in technology and routine breast cancer screenings.

It is estimated that about 14,480 new invasive cases of cervical cancer will be diagnosed in 2021. Cervical cancer was once the most common cancer death amongst women in the U.S. Cancer death rates were reduced significantly with the use of a screening tool to detect changes in the cervix, also known as the Pap test.

Early detection and screening has saved so many of us. Can you imagine making it through one cancer diagnosis only to be given another and a different type at that? Hear from two of our Cervivor community members in their experiences with both breast and cervical cancer.

Laura shares her thoughts as a breast and cervical cancer survivor

After treatment, Laura was trying to find other advocates and advocacy resources for cervical cancer patients. She noticed there was a difference in how the treatments were carried out and in the kind of support she received between the two cancers.

“I first encountered cancer in the form of cervical cancer. The treatments were isolating, there was a lack of resources, and there was a stigma that left me feeling ashamed and not understanding why. Two years later, I was diagnosed with breast cancer. I experienced a complete 180, the treatments took place in a communal setting, pink support was everywhere, and there was no feeling of shame.”

Laura wanted to understand what she could do to help gynecologic cancer patients, specifically cervical cancer patients. She was drawn to Cervivor School as a way to dive in with trusted resources and what she found, in addition, was a sisterhood and a way to network with community partners. Since Laura attended Cervivor School Chicago in 2019, she has built community partnerships like the one with her local American Cancer Society Cancer Action Network (ACSCAN).

“My plea to everyone is to not let any screening lapse – cervical, breast, skin, colon, etc. Don’t let your guard down against cancer of any type!”

Read Laura’s Cervivor story here, then read her interview with the Daily Journal.

Photo Courtesy of Daily Journal

Karen, a former nurse, and breast cancer survivor gives helpful tips on navigating a diagnosis

Karen was well aware of the pink ribbon after her experience with breast cancer. She found herself asking what ribbon color represented cervical cancer after her diagnosis in 2015.

Karen recommends these helpful tips on navigating a cancer diagnosis:

  • First, don’t Google it. This can put you in a negative headspace right off the bat.
  • Get to know all of the key care team members taking care of you.
  • Bring a family member or friend to all of your appointments as a second set of ears. If you are not able to have someone with you due to unforeseen circumstances, ask your care team if it is okay to record your visit with your smart phone.
  • Bring a notebook and keep a running list of questions you may want to ask your care team between visits. This also comes in handy to keep track of side effects, medications, etc.
  • Don’t be afraid to ask for help!

She expresses additional things that helped her during her cancer treatment, “I went to physical therapy to regain mobility, I reached out for support to other friends that had had breast cancer – like my friend that lives in Australia. She and I would text on those nights I couldn’t sleep. I decided to see a counselor in conjunction with my psychiatrist to work through the emotional turmoil I was experiencing.  With breast cancer, I didn’t feel abandoned by my friends but when I had cervical cancer, it felt different. Lastly, I continued going to my favorite place at the lake so I could connect with nature’s beauty. It really brought some peace into my life.”

Read Karen’s Cervivor story here then read her blog post “On Wednesdays we wear Pink”… wait, what?.

Karen attending Cervivor School Chicago in 2019

If you’re reading this today and you haven’t scheduled your routine cancer screenings, pick up your phone or go online and schedule them now! Screening and early detection saves lives.

Screening guidelines change often with the advancement of technology. If you’re unsure of your screening guidelines, go here for breast cancer and here for cervical cancer.

Are you a patient, survivor, and/or thriver looking for support? Visit these resources:

Remembering Becky

The Cervivor community has again felt a great loss. Today we honor and remember Cervivor Ambassador Becky Wallace.

Becky held such kindness for everybody she met; so giving and generous of herself no matter her personal struggles, she always cheered others on.

“It wasn’t meant for me to just get cervical cancer and wipe my hands of it and move on; without making a meaningful difference in the story of the disease, without taking action to help prevent it for others.” – Becky Wallace

She was fierce. A mama bear. And after finding Cervivor, she knew her existence. She wanted other mothers to know her story, and that their well-being was as important as their families. She found a home within the Cervivor community too.

We are sending our light and love to Becky’s husband Ryan, their beautiful daughters and all her family and friends.

A Promise Kept

Today is National Coming Out Day. I reflect on the different aspects of being gay, having been closeted for years, the amount of courage and fear associated with coming out, and the gain in finally being who I am and love, who my soul desires. I reflect on the years that I spent soul searching knowing that the spark was slowly lighting from within when I was given a “post-hysterectomy-oophorectomy cancer diagnosis” in 2010. 

However, it was not until another seven years later that I would embark on the journey from within my soul that would actually allow me to comprehend what “truly living in my authentic life” meant. 

In January 2016, my best friend, Nikki, gained her heavenly wings after a long battle against ovarian, lung, liver, bone, and brain cancers. In one of my final visits at her bedside, she said something to me that resonated so deep within my soul. She whispered to me “Promise me. Promise me you will start living. Really live life! I love you so much, friend!” 

Tina & Her Friend, Nikki

That moment was the beginning of a “shift” in my life.

I realized I owed it to myself and to my daughter to begin healing and authentically seeking who I am because I was living a life that displayed dishonesty of ones’ self to my own daughter. I didn’t want her growing up with less self value than her worth because she was afraid to chase after what her heart longs for. 

While the healing process is a long road traveled, I didn’t have the support that I expected. I battled survivor guilt, anxiety, and stress from years of processing the hysterectomy oophorectomy treatment I had undergone.

I learned that a cancer caregiver can be a multitude of people in many seasons of life. While the ones who cared at my bedside post surgery were not the same caregivers helping me with accepting and loving myself while healing from past traumas. 

Then I met the caregiver who completed my soul. 

On October 9, 2017, I met Tara, who equally challenged and changed my life for the better in every aspect imaginable. It was the amount of wholeness and love that I knew I could not contain from the world so this led to my coming out journey. 

Tina & Tara at Pride Festival 2019

As a cancer survivor, I undergo an annual wellness pap test and exam to ensure there is no reoccurrence. As an openly gay woman, there are challenges in finding a provider who is affirming and one that I am comfortable discussing personal aspects of my relationship with.

I say this in my sweetest mama bear voice, ladies —  cancer does not discriminate. Cancer does not care about your sexual orientation or history. Regardless of your sexual orientation, you still need wellness exams and cancer screenings. Your health is important. There are many resources available to help find an LGBTQ+ affirming gynecologist. 

Since coming out, I have found a new gynecologist who is LGBTQ+ affirming. It took several attempts with researching websites. While it shouldn’t matter, it does. You should feel completely safe, confident and comfortable with your gynecologist. 

I have not always had a great support system. I understand the pain and anxiety associated with loss of friends and family in the coming out process, but I also know the happiness and joy in finally filling the void that was keeping me from living my authentic life.

My message to my LGBTQ+ cancer community is quite simple: Kudos to you for owning your story, stepping into your brave, embracing your chaos and breaking free from the chains of conformity to find your contentment.  

Pride Festival 2019

I know how challenging the journey can be! Even though we travel on the same road as another person, our destination and duration are unique.

Remember, it is necessary to take a rest and exhale. Freshen up. Look in the mirror and remind yourself why you’re on this trip! Seek the adventure that your heart yearns for.

While I cannot promise the road you travel will always be easy, I can promise it is worth every step.

You are not alone, you are loved, and you are worthy! I relate to your life and I am a “safe place” to come out to for support and encouragement. Someday your journey will be someone else’s survivor guide. 

Much love and light,

Tina

Cervivor community member Tina is a mother of a teenage daughter, partner, and longtime Cervivor supporter. She was diagnosed with cervical carcinoma in situ (CIS) at age 26. Her goal is to help women remember the importance of their cancer screenings regardless of their sexual orientation. She hopes to educate, inspire, and support women, especially in the LGBTQ+ community. 

Juggling Gratitude and Luck

I was diagnosed with Stage II cerivcal adenocarcinoma just before Christmas in 2015, caused by HPV 16. Lots of people remember the date they heard those words. I don’t. I remember the fear, the disbelief, the questions, the pounding feeling in my head, and the instinct to run, far, far away. Just keep running away so this would never catch me.

October 5 will mark my five year anniversary of NED (no evidence of disease) diagnosis. I have been waiting for this day, this special marker in the cancer world, since I heard those three words, “You have cancer.” I imagined this day multiple times throughout the years. In my imagination it would be a day of huge celebrations, with a big party with my friends and family to commenorate this huge milestone. It would be a day where I would finally feel relief from the constant worry of recurrence. It would be the day my life went back to “normal” and I could magically turn back into the “pre-cancer-me .”

I was wrong.  

This day comes with many mixed emotions for me. When I was diagnosed, I thought I would go through treatment, recover, move on and never look back. Nothing could be farther from the truth.

I went through the treatments, the chemo, the external radiation, the internal radiation. Treatments that made me so sick I couldn’t work, couldn’t take care of my children, couldn’t do simple tasks like walk up the stairs or eat a small meal. Treatments that took away my fertility and put me into menopause at age 36. I went through countless side effects, including an allergic reaction to chemo, stents being placed in both ureters, a radical hysterectomy, reconstructive bladder surgery, not to mention the daily side effects I still currently deal with. These treatments almost broke me. There were many times I wanted to give up, throw in the towel and declare cancer as the winner.  It is only because of my children that I didn’t do that.

Once I had finally gotten through the treatments for cervical cancer, and hit the one year mark, I was excited. I was on the right track, moving forward. I began to get more involved with Cervivor and advocacy. I began embracing my story and sharing it with anyone who would listen. Then I got the news that I never, ever expected to hear.

I was diagnosed with pre-cancerous lesions on my vaginal wall. A new and different type of cancer, still caused by HPV.  Never, not once, did I imagine I would be dealing with a second, even more rare type of pre-cancerous lesions.  It hit me like a ton of bricks. And yet, with my new found support system through Cervivor, I felt I could handle it. I would do chemo again. I would change my diet and eat zero carbs and zero sugar to help curb the growth of these lesions. I was a woman on a mission and no one could stop me.

Two months later, after treatments, the lesions were gone but the relief still didn’t come. I went to each six month appointment expecting the worst. I became a basket case every six months, for the week leading up to my appointments and for the following week waiting for the results. I was basically incapacitated.  

I was lucky. For the next four years I had clear exams. At my four year appointment, my oncologist told me she didn’t need to see me in six months and that I could wait a full year until my next exam. I felt like this was a huge milestone.  She wasn’t worried, so I could let my guard, just a little bit.

I was wrong, again.

My five year exam revealed that once again I have lesions on my vaginal wall. This time it has wrecked me. The chemo has been very difficult, painful and exhausting. I feel like I have the flu all the time. My anxiety is through the roof, and my physical and emotional stability are precarious, at best. 

And I am still coming up on five years free from cervical cancer. I have so much to be grateful for and to celebrate.  I have not had a recurrence of cervical cancer, which means I most likely won’t. I have two beautiful children and a supportive, adoring husband. My family is amazing and continues to lift me up when I fall. My mom, in particular, is there whenever I need her, day or night, near or far, she is always there for me.  

I am grateful for the way that cancer changed me. It gave me a new purpose in my life, I have been able to lobby with ACSCAN in both California and Washington D.C. I have met the bravest, kindest, most caring women in the world, through Cervivor. Women I never would have met, had it not been for the “exclusive club,” that we were all forced to join. I have learned that I am stronger than I ever thought possible and that my voice and my story matter.  These are all things to celebrate.  

And yet here I sit. Tears streaming down my face.  

I am crying for what I have had to go through. For what my family, my husband and my children have had to go through. And for what we all continue to go through with this round of lesions and chemo. I am crying for the fear that I still have, and will always have, about my future. I am crying for the women I know who weren’t as lucky as I am, and didn’t get to see their five year mark. Because that’s what it boils down to. Luck. Women with the same diagnosis and treatment, and some of us survive and others do not. No one isn’t fighting as hard as they can. None of us leave anything on the table when it comes to this fight against cancer and HPV. Some of us are just lucky, and luck is a very hard thing to celebrate.  

Ana & Jeff

My five year cervical cancer NED anniversary is a conundrum of mixed emotions. I am both optimistic and fearful about my future. I am sad and in a constant state of sorrow for what I have had to endure, and for what others have had to endure, and for the luck of the draw. And yet, I am grateful. So, so, grateful. The amazing thing about being human is that we can hold all of these things at one time. 

So, here’s to five years. In honor of my journey I ask that today you live your best life. Do something that brings you joy, hug those you are close to, and reach out to those who are far away. I ask that you please make your appointments for your Pap and HPV tests, and most of all that you vaccinate your sons and daughters against HPV.

Ana is mother of two, wife, educator and Cervivor Ambassador. She was diagnosed with cervical adenocarcinoma at age 35 and has been diagnosed twice with vaginal lesions, caused by HPV. Ana is currently finishing chemotherapy treatment for these lesions. Her goal is that no woman feels alone when they receive a cervical cancer diagnosis and that her generation be the last to to deal with HPV related cancers.

Celebrating Breast Cancer Awareness Month as a Cervivor

As cervical cancer survivors, we advocate to bring more awareness to cervical cancer and all gynecologic cancers. Our cancers do not have the same visibility as breast cancer but there was a time when breast cancer was not talked about, let alone celebrated.

It was the work of Nancy G. Brinker, founder of Susan G. Komen® who really changed the narrative of breast cancer and started the ‘pink revolution’. When Ms. Brinker spoke to our 2018 Cervivor School attendees, she shared with us how it was an uphill battle to bring visibility to a ‘woman’s cancer’, a taboo subject that was only whispered about. She persisted and today we see the positive outcome of her work; the glass ceiling she broke through for others to follow.

We know that we still have so much work to do to bring this kind of recognition to cervical cancer but what’s important to remember is that above and below the belt cancers all take so much away from us – breasts, reproductive organs, cervixes, vaginas, and so much more. We may struggle with redefining our womanhood and we carry our physical and emotional scars with us beyond our cancer diagnosis and treatment.

These cancers change us forever.

As women, we fight hard every day for equality; to have a seat at the table, to be heard. We should be able to look to each other for support, especially when it comes to our bodies.

We are all in the cancer club regardless of what color our awareness ribbon reflects.

Today, more than ever, is the time to come together and advocate for women’s health. Every month. Every day. We can support our breast cancer friends this month and come January, just like in September, these friends will be sharing and supporting our message of cervical cancer prevention, helping us paint the world teal and white.

Hispanic Heritage Month

Did you know that Hispanic/Latina women have the highest incidence rate of cervical cancer in the U.S.? They undergo significantly fewer Pap tests than non-Hispanic white and black women and are less likely than women of other races/ethnicities to return for recommended follow-up after an abnormal Pap test.

These statistics from the American Cancer Society and Centers from Disease Control (CDC) are instructive to us at Cervivor to guide some of our educational efforts.

National Hispanic Heritage Month (celebrated Sept. 15 – Oct. 15 to correspond with the independence of many countries in Central America) honors Hispanic history, culture and contributions. Communities across the country mark the month with festivals and educational activities.

We want to halt cervical cancer in its tracks, in America and around the world. To do that most effectively, we need to be aware of the disparities in cervical cancer incidence and mortality among populations of women. 

For example, in the U.S., black women (followed by Hispanic women) have the highest death rate from cervical cancer. Mortality (death) rates of cervical cancer among Hispanic women are 50 percent higher than those of non-Hispanic women, and incidence rates among Hispanics are twice the rates of non-Hispanic women. Different populations bear different burdens of this disease, for different reasons.

Data from the American Cancer Society show that Hispanic women are less likely to get regular Pap tests. Hispanic and Latino Americans amount to an estimated 17.8% of the total U.S. population, making up the largest ethnic minority. This makes it a focus for our educational messages about cervical cancer prevention with Pap testing, HPV testing and HPV vaccination. This makes it a focus for our advocacy, education and personal Cervivor stories. 

What can we do as Cervivors?

  1. Familiarize yourself with Spanish-language educational resources and share them as part of your education and advocacy work. There is a downloadable Spanish-language “foto-novela” from the American Sexual Health Association, for example, fact sheets from the National Cancer Institute and cervical cancer screening patient information sheets from the American College of Obstetricians & Gynecologists. (These and many more Spanish language resources are available here.)
  2. Join Cervivor Español: Private Facebook Group For Latina Cervical Cancer Patients & Survivors.
  3. Support local and national cancer control and prevention programs and policies aimed at decreasing disparities in cervical cancer mortality. For example: health reform efforts to reduce discriminatory practices against cancer patients and survivors; policies to include no-cost cervical cancer screenings and HPV vaccination as a mandated part of insurance coverage, and initiatives to expand HPV vaccination. 
  4. Support the National Breast and Cervical Cancer Early Detection Program (NBCCEDP): The CDC’s NBCCEDP provides uninsured and underinsured women access to no-cost screening and diagnostic services, as well as a pathway to cancer treatment. Support federal and state funding for this program. Advocate for more funding to expand the reach of this lifesaving program. 
  5. Share your story. We’d love to have more representation from Latina Cervivors on our site. Submit your story here and come to one of our Cervivor Schools to learn more about bringing education and advocacy to your community. 
  6. Share Cervivor content on your social media platforms. You never know who might need this information.

We are all bonded by this disease. We are all motivated to ensure that no one else has to go through what we’ve gone through. Let’s be aware of the racial disparities in cervical cancer, address them head on, and put our support, stories and voices behind programs that can change cervical cancer statistics and save lives. 

Let’s celebrate National Hispanic Heritage Month by recognizing the power and strength of the Latino community and to doing what we can to expand education about cervical cancer screening and prevention. 

Remembering Grace

It is with our deepest sympathy we announce the passing of community member Grace Chantiam Bracci.

Grace found our organization in 2020 – the year she deemed the three C Year: Covid, Cancer, and Other Crap.

She immediately immersed herself in sharing her story. 

She was willing to share in any way to prevent others from going through what she had and later continued to go through. She wanted to advocate up until her final breath.

Grace was a bright light who brought sass and humor with her to lift the heaviness the community deals with every day.

She loved admitting she was a Star Wars nerd. She made sure to tell us her wedding was scheduled for 5/4/20 but due to the pandemic she had to reschedule it.

The world seems a little dimmer today and we know Grace will be missed so dearly in this community. 

One of the last things she said to us was, “Thank you to Cervivor for providing me with exactly what I needed during this last year, to let me know I wasn’t alone and supporting me through all of this.”

Our thoughts and prayers are with Grace’s son, partner, extended family and friends and our entire Cervivor community. We know how much each of you meant to her.

Join us is remembering Grace.

Read Grace’s Cervivor Story, her interview with Alberta Cancer Foundation and from her personal blog.

If you wish to assist in supporting Graces last wishes, which included her dream for Alexander to have a family visit to Disney World, the family welcomes any support via e-transfer to [email protected].

Recap from National Nonprofit Day

National Nonprofit Day 2021 has come and gone. It was a day we chose to celebrate everything that Cervivor is and stands for. We shared various facts across all of our social media platforms and even highlighted leaders and voices within our community.

A Letter from Our Founder

Hello Cervivor Community!

Today is not only Teal and White Tuesday, but also National Nonprofit Day! That makes it super awesome. I love any reason to shine a light on our community and our cause. When I was diagnosed with cervical cancer, I felt like something was missing. So, I created what I wish I had. Never in my wildest dreams could I have imagined how this little idea would grow into a global community. Today, I hope you celebrate with me and take time to reflect on who we are and what we represent. I am in awe of this mighty and impactful organization. 

If you are following us on social media; and if you are not, you should be! Join us all day as we share a little of our backstory and some exciting plans for the future. Also, check out one of my favorite videos that gives you an inside look into our organization. And this article from Cure Today Magazine that highlights a vow I made to the cervical cancer community. 

Lastly, however you’ve come to be a part of this community, I want to take a moment and thank you for being here. We wouldn’t be where we are without you. You have my heart. If you are able, please consider making a donation or visit our Cervivor shop today. 

Warmest regards, 

Tamika Felder
20-Year Cervical Cancer Survivor aka #cervivor
Chief Visionary, Cervivor, Inc.

Who We Are, What We Do

Cervical cancer can be isolating and can often carry a stigma. Our mission is to empower those who have been impacted by cervical cancer; to educate them with the latest facts from the cervical cancer world through our signature patient advocacy retreat Cervivor School, and to motivate them to use their voices for creating awareness to end stigma.

Voices from Our Community

Chellese shares, “Cervivor was something I didn’t know I needed. It’s really so much, I don’t even think I could put into words. It’s about the sense of community with your Cervivor sisters, having the tools you need to be a good advocate, and learning how to deal with stress. So much of what I needed was here and I’m so grateful to have had this experience.”

Kristine says, “Cervivor is a community where you don’t feel alone. It’s a safe place to ask questions and share your thoughts. We share a commonality whether we are/were diagnosed with a pre-cancerous condition, diagnosed with cervical cancer, being a caregiver, or supportive friend and it puts perspective on how precious life is and how we live through survivorship.

And Natasha states, “I will advocate for the HPV vaccine. I will provide support to the women I’ve met online who are diagnosed with cervical cancer.”

We Welcome Our Newest Program

We are so excited to be announcing the launch of our Comfort Care and Compassion Program! A cervical cancer diagnosis is devastating and has complex layers like shame and stigma attached to it. This program was developed to support those facing a cervical cancer diagnosis or a recurrence to let them know they are never alone.

The CCC Program has three components: A chemo care bag for those newly diagnosed and in active treatment; a card program with handwritten cards from cervical cancer survivors in our community, and a pin program to celebrate survivorship milestones. To find out more, please visit our website.

Support Our Work

None of this work could be possible without donations from generous donors and sponsors like you! We believe in collaborative work. We believe with our community and community partners working side-by-side that we will be able to shift the narrative on HPV and cervical cancer. We know we will increase awareness of cancer screenings and prevention, and we believe that ending cervical cancer is within our reach. Please make a donation today through our website and support our global initiative to end cervical cancer once and for all.

Welcome to the Clinical Trial Round Up!

It is an exciting time for science and cervical cancer! There have been limited treatments for cervical cancer for several years but now we are seeing more clinical trials opening especially for metastatic and recurrent cervical cancer patients. If you have information on a clinical trial that you would like us to include, please email us at [email protected].

innovaTV 301 – GOG 3057

The innovaTV 301 study is testing a study drug, tisotumab vedotin, for people with cervical cancer that has spread or has come back after treatment. During the study, participants will receive either the study drug or chemotherapy treatment for cervical cancer. This study drug works in a new way and is designed to target cervical cancer cells.

Visit their website here.

E7 TCR T Cells for Human Papillomavirus-Associated Cancers

Human papillomavirus (HPV) can cause cervical, throat, anal, and genital cancers. Cancers caused by HPV have a HPV protein called E7 inside of their cells. In this new therapy, researchers take a person’s blood, remove certain white blood cells, and insert genes that make them to target cancer cells that have the E7 protein. The genetically changed cells, called E7 TCR cells, are then given back to the person to fight the cancer.

Find out more here.

RTX-321

portrait of sportswoman standing in the the fields at sunrise

This Phase 1 clinical trial of RTX-321 for the treatment of HPV 16-associated cancers is an open label, multicenter, multidose, first-in-human dose escalation and expansion study designed to evaluate whether RTX-321 is tolerated, how much RTX-321 needs to be given, how often it should be given and if RTX-321 has anti-tumor activity against the cancer.

The trial is also assessing the pharmacodynamic effects of RTX-321 as measured by changes in number of CD8+ T-cells relative to baseline.

Visit their website to learn more.

Phase I & II Clinical Trial Resource

Mary Crowley Cancer Research is a specialized clinical research center that offers access to new investigational therapies through the administration of Phase I and II clinical trials. 

  • Personalized approach to cancer research
  • Clinical trials are matched to molecular information found within each cancer patient
  • Qualified Physician Investigators add to the understanding of what drives cancer and create innovative research applications that attack these drivers
  • Patient-centric focus brings the newest clinical trial options to patients at a rapid pace

Visit their website to view current Phase I and II clinical trial opportunities.

Join us for an upcoming event over clinical trials!

Don’t miss out on learning more about clinical trials and the patient experience! Join us for a collaborative event with SQZ Biotechnologies! You’ll hear the latest on cervical cancer and clinical trials from the first-hand experiences of an SQZ researcher as well as a patient focused panel. 

Register today!

Helpful Resources

Here at Cervivor, we know knowledge is power. That is why we’re bringing all these great resources right to your inbox! We also know that sharing is caring – you never know who will need this information.

Fertility Preservation

The Alliance for Fertility Preservation created Fertility Scout to help you find fertility preservation and other family building services quickly. 

Fertility Scout features three simple steps to connect you with healthcare and other providers that will best service your fertility and post-treatment reproductive needs:
1. SEARCH for the service and location that you need; OR search by the name of the doctor, provider, or facility.
2. SELECT the doctor, provider, or facility that you wish to connect with and view information about.
3. CONTACT the facility directly, by calling or by using the secure online form to request a consultation or send a message.

Preparation for Chemotherapy

Prepare for Surgery Heal Faster has expanded throughout the years and the author has developed a way to assist people who may feel anxious about chemotherapy. All of her work is research based and supported. If you are interested in more information, please email Dr. Lillian Walker Shelton, Ed.D.,LPC, LCPC, ACS.

Clinical Trials

A New Clinical Trial

A new clinical trial for metastatic cervical cancer has opened to evaluate the efficacy and safety of tiragolumab in combination with atezolizumab and atezolizumab monotherapy in patients with programmed death-ligand 1 (PD-L1)-positive cervical cancer (metastatic and/or recurrent).

For more information visit the study page.

Mary Crowley Cancer Research

Mary Crowley Cancer Research is a specialized clinical research center that offers access to new investigational therapies through the administration of Phase I and II clinical trials. 

  • Personalized approach to cancer research
  • Clinical trials are matched to molecular information found within each cancer patient
  • Qualified Physician Investigators add to the understanding of what drives cancer and create innovative research applications that attack these drivers
  • Patient-centric focus brings the newest clinical trial options to patients at a rapid pace

Visit their website to view current Phase I and II clinical trial opportunities.

Emotional Support/Mentorship

Imerman Angels

Are you a cancer fighter, survivor, previvor or caregiver looking for one–on–one support?

Through our unique matching process, Imerman Angels partners individuals seeking cancer support with a Mentor Angel — a cancer previvor, survivor or caregiver who has been in their shoes. These one-on-one relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience. Mentor Angels can lend support and empathy while helping cancer fighters and caregivers navigate the system, determine their options and create their own support systems. Support is also provided to those who have lost someone to cancer and is looking to speak to someone who has lost someone to cancer.

The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage, at any age, living anywhere in the world. Each applicant speaks personally with a staff member of Imerman Angels and all Mentor Angels are properly screened and trained.

Financial/Every Day Living Assistance

The Samfund

The Samfund supports young adult cancer survivors in the United States as they recover from the financial impact of cancer treatment. The Fall 2021 Grant application is now open! Find out more here.

Family Reach

Family Reach is a national 501(c)(3) organization dedicated to eradicating the financial barriers that accompany a cancer diagnosis.

Patient Advocate Foundation (PAF)

Patient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit organization which provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.

Fitness

Survivor Slimdown

Staying active is a great component of self-care. Did you know we have a group for all cancer survivors? Join Survivor Slimdown to get daily fit tips, inspiration, and comradery from fellow survivors. Plus, you get to know the monthly challenges first!

Remembering Erica

Today, we’re thinking of Erica Frazier Stum on what would have been her 36th birthday. Erica served our community as our Lead Cervivor Ambassador until she died in 2018. She left a legacy of living life to the fullest despite her cervical cancer diagnosis.

Erica and her son, Wylee wrote a book together to help moms and kids process cancer and all the feelings that it brings. We’ve been gifting her book to moms as well as gifting it to cancer centers. Please feel free to join us by sharing this amazing book and in sharing your favorite memories of Erica on our social media platforms.

Purchase a copy of her book here: https://amzn.to/3dUoOpO.
Watch Erica share her story: https://youtu.be/CmskqbiTJNs.
Listen to Erica on the Podcast: https://bit.ly/3hM7gO4.
Read Erica’s story: https://cervivor.org/stories/erica/.

Cancer Health 25

Cervivor’s founder Tamika Felder has been awarded Cancer Health’s 25: Black Lives Matter for her work towards health equity. She is among a dedicated and distinguished group of recipients, all who are working tirelessly to eliminate healthcare disparities within Black communities.

We could not be more proud of Tamika’s work in this space and beyond.

Join us in congratulating Tamika and be sure to check out Cancer Health’s feature: https://www.cancerhealth.com/…/cancer-health-25-black….

A Letter To Myself

My Dear You,

Checking in see how you’re doing, Laurie but I will begin with me, lol. First, congratulations on eight years as a cervical cancer survivor! 

I have been peeking back at 2020 as some of the fog is beginning to clear. I learned so much about myself and how strong I am physical and mentally. A knee replacement started my Journey of WTF.

I had no previous knee issues until now and there was no question that I needed a new right knee. I did my research and found the best team but no one talked about the dark side, and how the pain would take me there. It sucked! It was a lot of body and mind work but I had no choice and I kept moving forward, learning how to walk again. I was so happy I could lift my knee that I started marching! My physical therapist and I laughed so hard, I can still hear her words “heel toe, heel toe”.  Physical therapy was equal parts laughing and crying.  

Then there was more crying when I was told I needed a left hip replacement. Really? WTF!

I was working so hard preparing for my knee surgery, clearing my mind and focusing on this new challenge of a hip replacement when BANG!

Literally bang. An 18-wheeler semi-truck hit me and my life forever changed. I repeated these words: I am alive. OMG I am alive and I lived through it! 

I had to start all over with my knee physical therapy, then had the hip replacement but I smiled and lived! Then the damn concussion from the accident made me so dizzy and the ringing in my ears was unbearable. I stared brain therapy. There was so much laughing and fun but the physical therapy didn’t help so I went for an MRI. 

I have a hard time with this part of 2020. The doctor tells me they found a brain tumor… WTF?? The doctor told me it’s not a big deal as it’s outside the brain and it will be a two-hour surgery. I had to do another MRI with contrast in a brain MRI machine. I was doing good and no one seemed worried. Eric went with me to the pre-op appointment and I had all my questions ready. I thought I was fully prepared but I will never forget the words I heard, “Laurie I’m so sorry to tell you the tumors are larger and growing remarkably close to your main artery. You will need two surgeries.”  I cried but you know I still asked my questions! It’s funny what I held onto from that moment; I just remember thinking how cool that a 3-D printer was going to make my new skull plate! I had six weeks to prepare my mind and body. 

Cervivor’s Cervical Cancer Summit was my life jacket in taking my power back! You never know who will touch you with a word and I received so many words that weekend!

Laurie and her brain surgery team

Medical power of attorney, medical directive, living will; I had that conversation with Eric and it was healing. I printed everything and it sat on the table. I read and re-read it again and then I laughed and I filled it out. It was so freeing. Then I went and did something crazy: I harnessed the power of Wonder Woman and got myself a Wonder Woman costume to wear into the hospital on my surgery day!

I knew no matter what happened I was going to be okay. I have never told anyone this but I kept saying “no matter what I will be okay” as I was being rolled into the operating room.  

The first surgery took a lot out of me. It took me a couple of days to regroup before the second surgery and I had to really dig deep, deeper than I have ever done before.

This drawing helped me so much it. This showed me that I could do this.

Can you believe I had four surgeries within an eight month period? I am so grateful, blessed and I am not done yet! Thank you for teaching me how to keep laughing and living!

This also helped me with my digging out and moving forward and it’s pretty cool: Fear is a noun and a verb. Noun: an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain or a threat. Verb: be afraid of someone or something as likely to be dangerous, painful or threatening.

Fear is a feeling or emotion, yeah a mind bender moment for me.

I take small steps one at a time and I keep moving forward. I have a huge team of people around me. Some I have never met but they care and worked so hard to help get me here. I say thank you daily by living my best life!

Laurie, I am so proud of you and I love you so much! I can’t wait to see what you do next!

Love & Hugs, Me

P.S. Looking forward to your next letter.

Laurie is a 2017 Cervivor School graduate, a member of the Cervivor community, and Executive Director of Cervical Cancer Colorado Connection. Her resilience is truly insurmountable! We are sending her tons of Cervivor love and support.

Reaching That First Big Milestone

Five years? How is it possible?

Five years. It seems like much longer yet it’s still so fresh in my mind. I have spent so much time processing through what happened to me – the good and the bad. Where there was darkness, there was so much beauty to equal it out. Cue the universe’s synchronicities and all the cardinal sightings.

Six years ago, I was diagnosed with cervical cancer for the first time at age 24. They found spots in my lungs after only being six months into remission. It was truly devastating! I was back in school full-time, working full-time, and trying to regain some normalcy.

But life had other plans for me.

I went through diagnostic test after diagnostic test to confirm it was cancer. Indeed, I would be facing my mortality once again. I will never forget the words my oncologist spoke to me after I received my first three treatments, “There are 7-9% of women who experience a complete interval response to treatment. You are one of those 7-9%. You don’t have any evidence of disease.”

I knew I had been given such an incredible gift and that I must not waste this second chance at life. What I didn’t expect was to find my voice as loud as I’ve made it. I stumbled across Cervivor through a hashtag on Instagram – I didn’t see this as a coincidence. I fundraised my way to Cervivor School in 2017 where I flew out to Delray Beach, Florida and learned how to use my voice in advocacy. The rest is history.

I’m still processing through many of accomplishments that I’ve experienced over the last five years including the idea that I’ve graduated three times despite my diagnosis and treatments, and that I’ve reached my first big cancerversary milestone. I’ve jumped at every Cervivor opportunity to be a part of change from cancer panel speaking opportunities to proclamation signings with Iowa’s governor for Cervical Cancer Awareness Month (January) to volunteering with the American Cancer Society Cancer Action Network (ACSCAN) to protect or improve policies related to cancer care. I also serve as a leader with Above and Beyond Cancer to make the Adolescent and Young Adult (AYA) community visible locally. Because of this work, I’ve been given three awards from Cervivor, ACSCAN, and Above and Beyond Cancer.

I know I wouldn’t be able to do this work alone, it takes a village to make a difference – to make change happen. It is exhausting and it can take a toll but it is also truly rewarding to see our impact taking place across the globe. I’ve met so many resilient and passionate advocates (along with their family members) – some are still with us while others have succumbed to their diagnoses. As a survivor and patient advocate, I had to accept and understand that this was going to be a common occurrence in our community but it didn’t make it suck any less.

However challenging this work may be, I wouldn’t trade this personal and professional growth for anything. Here’s to 5 years cancer free!

Morgan is a metastatic recurrent cervical cancer survivor, a 3x award winning patient advocate, and our Community Manager for Cervivor. She resides in Iowa with her boyfriend, Tony, their cat, Jeezy, and dachshund, Sassy. Morgan continues to advocate tirelessly in hopes her story can help others.

CervivorTV Wins Again!

Cervivor Chief Visionary Tamika Felder and music composer Pete Lacey Receive Three Telly Awards

May 25, 2021 – During a year when the world shutdown, Cervivor created a video that shows what resilience and strength look like. The song, The Will to BE, written and composed by Cervivor caregiver Pete Lacey, is the backdrop to this timeless music video featuring amazing cervical cancer survivors from around the world. This beautiful video was made in partnership with Tim Hashko, President of Steaming Kettle.

Winning Gold in Three Categories: Social Impact, Social Not for Profit and The People’s Choice

CervivorTV now holds six Telly Awards

“Winning three Telly Awards for our work on Cervivor is a testament to the brave women in our network that advocate for themselves and others affected by the disease, who are forcing conversation about the ugly nature of this often misunderstood and stigmatized form of women’s cancer,” said Tamika Felder, Founder and Chief Visionary of Cervivor. “We feel heard – our stories are being validated and celebrated out of the 12,000 entries the Telly Awards receive, which shows that people want to learn about cervical cancer, they just need someone to teach them.”

“When I saw the first cut of the video, I knew it was going to be something special. I soon recognized that my aspirational lyrics that are lived by incredibly inspirational Cervivors, would be impactful, thought provoking and healing. I’m humbled to know the world now thinks so too”, said Pete Lacey.

“We wanted to show the world that cervical cancer is not faceless. We come from all walks of life and have been affected by this horrible disease but we continue to persevere and find joy in living”, said Carol Lacey, Lead Cervivor Ambassador and Production Manager for the The Will to BE video.

Cervivor knows the power a story holds and this community did not hesitate to step up and bring a light of hope when so much of the world is struggling. We saw these women just as they are, sharing that in spite all the adversity cancer brings, life is about the small moments that bring us laughter, happiness and a sense of calm. As the rest of the world moves through a challenging pandemic, those in the Cervivor community showed us that it is possible to rise above stronger together.

About Tamika Felder

Tamika Felder is well-versed in media on both sides of the camera: she’s provided commentary to national radio shows, worked as a journalist and producer in multiple capacities, and is now in the process of making her own documentary. See this short video on her lifestyle website to see how she’s living her second chance, and read more about her experience with cervical cancer on the Cervivor website. 

About Cervivor

Cervivor builds a community for cervical cancer survivors, family members, educators and caregivers to advocate for HPV awareness, cervical cancer prevention, to create meaningful networks across survivors and experts in the field; and to ultimately change the future of women’s health. To learn more, visit www.t0g.ce7.mywebsitetransfer.com. 

About Pete Lacey

Pete is an inspirational artist who has earned his reputation as a talented musician, skillful performer and composer. Pete generously donates much of the proceeds of the sale of his music to cancer fighting organizations like Cervivor. To learn more, visit www.petelacey.com.

About The Telly Awards

The Telly Awards was founded in 1979 to honor excellence in local, regional and cable television commercials with non-broadcast video and television programming added soon after. With the recent evolution and rise of digital video (web series, VR, 360 and beyond), the Telly Awards today also reflects and celebrates this exciting new era of the moving image on and offline. The Telly Awards annually showcases the best work created within television and across video, for all screens. Receiving over 12,000 entries from all 50 states and 5 continents, Telly Award winners represent work from some of the most respected advertising agencies, television stations, production companies and publishers from around the world. To learn more, visit www.tellyawards.com.

How One Cervivor Marks Important Milestones

On May 26, 2017 I found out my entire reproductive system needed to be removed when I received a cancer diagnosis over the phone: grade one endometrial cancer. The gynecologist said I would receive a call from oncology that day and that they were deeply sorry. One week prior, I’d received an acceptance letter into the accelerated MSW program. The start of that semester was not to be. I had hopes to begin the following cohort. 

Lorie’s original diagnosis

I was wheeled into surgery in July, eyes still damp from tears. Within a week of surgery, I received news that my grade one endometrial cancer was instead invasive grade two cervical cancer. Oncology apologized for the unexpected diagnosis. The tumor board suggested daily high dose pelvic radiation with concurrent weekly platinum chemo. I stood up, holding my entire post-surgery swollen abdomen and pelvis, agreed to it all, and left. I called my master’s advisor and said the treatment would continue through the beginning of winter. I found it difficult to breathe and I couldn’t hear what she said, except that she was terribly sorry. It wasn’t just the additional news of the treatment. It was the news coupled with the fact that I had already lost so much prior to this. I’d just spent a week in the hospital before my diagnosis due to severe asthma attack and had to rebuild my lungs. I had put myself through school for all my previous degrees (summa cum laude with my most recent), while co-managing a department and staff, while supporting my household which we lost to foreclosure after my partner lost his job (packing instead of going on a honeymoon) and staying with my mom months at a time to care for her after each of her falls. 

Lorie’s final diagnosis

I continued to focus on my dreams, even after my department closed to a college-wide restructure, my health deteriorated, and I lost my mother. The MSW dream wasn’t meant to be, and it was the first time in my life I couldn’t make the impossible possible for myself. I did not tolerate treatment well. In fact, the following years were spent dealing with the fallout from the radiation and now small nerve neuropathy from the cisplatin. Still, during this time, I became a cervical cancer advocate. Word got out, and I would begin to receive calls from strangers whose loved ones were at end of life. I would hold the hands of the dying after driving to their homes and hospitals. I used my adult-ed teaching and training to raise awareness and educate the community about cervical cancer.

Lorie with Bella striking their Cervi pose.

There is more on the horizon that only those closest to me know about. I am also due to have another major surgery to my abdomen soon and the level of fear is exquisite. Through everything, I am still grateful knowing that I find beauty in the lakes and the trees. Comforted, that I am a part of a community of survivors who hold space for each other. Although my actual cancerversary is November 1, the day I completed treatment, this month I remember the three words that changed my quality of life forever. 

Lorie is a three and half year cervical cancer survivor, thanks to life-changing surgery and cancer treatment. Prior to her diagnosis, Lorie worked in research, employee training and development, case management, workshop facilitating and sales. She now dedicates herself to cancer advocacy and support, community education on cancer and HPV awareness as well as elder and animal rights. Lorie is a community member of Cervivor.

“Your cervix looks different this year”

“Your cervix looks different this year,” said my primary care doctor several years ago, as she performed the pelvic exam part of my annual exam. I remember chuckling to myself, not fully grasping the severity of her comment yet. Instead, I laid on the table thinking, “How does she remember what my cervix looks like from year to year?”

My doctor referred me to a gynecologist when the exam was over. I didn’t understand, but I also didn’t ask any questions. I visited the gynecologist two days later. She performed a colposcopy and referred me to an oncologist. Two days after that, I met with the oncologist and he told me that I had stage 2B cervical cancer. What started out as a routine exam had quickly turned into a life-threatening diagnosis.

What if…? What if…? What if…?

How could I have cervical cancer? I didn’t feel sick. I had no symptoms. (Cervical cancer symptoms can include, but are not limited to, abnormal vaginal discharge, bleeding between periods, or pelvic pain during intercourse.) I went to my doctor every year for my annual well-woman exam and the results of my Pap tests always came back normal. But somehow, in the span of only one year, a 4 cm tumor had grown on my cervix. In one year, I went from having a normal Pap test result to having cancer. What a difference one year can make.

I started chemotherapy and radiation treatment to save my life. Doctors declared me cancer-free after I completed these treatments over the course of a few months. Today, I am a seven-year cervical cancer survivor. But my story could have been drastically different if I had skipped my well-woman exam that year.

What if I had used an excuse, like “I’m too busy”, to justify putting off that appointment? Or what if I had told myself that skipping one year wouldn’t hurt anything because I’m a generally healthy person? What if I had assumed my Pap test results would continue to be normal like they always had been? How much longer would my cancer have gone undetected? How far would my cancer have spread without my knowing? Would my prognosis have been different if my cancer wasn’t detected when it was? Would I even be alive today?

The importance of annual visits and cancer screenings

A cancer diagnosis is life changing. A cancer screening is lifesaving. Scheduling my annual exam saved my life. My cancer was detected early enough to be effectively treated because I went to my doctor every year.

If I had not scheduled my exam that year, my cancer would have continued to grow undetected and my life would have been at risk.

Preventative care exams are a breast exam, pelvic exam, and a Pap (and HPV) test. A Pap test looks for abnormal cells. If needed, these can be treated before they become cancerous. The HPV test looks for high-risk HPV that can cause abnormal cells. This lets your healthcare provider monitor you more closely for cell changes.. When the Pap test and HPV test are both performed during an exam, it is referred to as co-testing.

What are you waiting for?!

  • Reduce your risk for cervical cancer through screening tests, like the Pap test and HPV test.
  • Take care of yourself by scheduling your annual well-woman exam.
  • Raise awareness for cervical cancer detection and prevention by telling your family and friends to schedule their annual well-woman exams.
  • Benefit from Iowa’s Care for Yourself program, which provides free or low-cost cancer screenings for Iowans. Many other states have free or low-cost cancer screening programs too. Be sure to visit your state or county health department’s website.
  • Make a resolution to protect your health all year long.

About the Author

Emily Hoffman is a seven-year cervical cancer survivor who was diagnosed with stage 2B cervical cancer at age 30. She is a patient advocate and Cervivor Ambassador who shares her cancer story to raise awareness for cervical cancer and educate others on the importance of cancer screenings and prevention. Emily is the recipient of the 2020 Cervivor Spark Award. She is currently pursuing her certification to become a cancer registrar.

Mother’s Day When You are Struggling to Become a Mother

While Mothers Day is a beautiful day to celebrate motherhood, it can also be a difficult day; especially if you are missing your Mama or struggling to become a mother yourself. The journey to motherhood isn’t always smooth or what you may expect.

I spent six Mother’s Days wishing, more than almost anything in the world, that I was a mother. While I was thankful to celebrate my Mom, who is and always has been great Mom!, part of me was also sad; very, very sad. I mean truthfully I was sad every day for a long time, but Mother’s Day always brought it home.

You see, I have three younger sisters, spent years babysitting, and spent several years working with mothers and babies as a nurse. I’d had lots of practice. I knew without a doubt that I wanted children; being a mother was just something I always wanted to be. But at 25, I was diagnosed with cancer that immediately robbed me of my fertility.

The specialist took one look and said, “It looks like you have cervical cancer. We’ll do what we can to save your fertility.” Cancer? My fertility? I hadn’t even attempted to conceive. I thought I had time, a lot more time. But, my tumor turned out to be too large for the procedure I hoped to have. So instead, in January of 2009, I had a complicated surgery that included a hysterectomy followed by chemotherapy and radiation.  I knew I would become a mother, but I knew my journey to motherhood would no longer be a traditional one. 

After that, my journey to motherhood was a rollercoaster. It involved more heartache than I could have imagined. But, I did eventually become a mother.  We had our son, Carter, in 2014. 

After that, we thought we were done. We thought our family was complete and, to be honest, we weren’t completely sure we could survive going through it all again. But, Carter had more faith. He started doing things like pointing to an empty chair when we were at a table for 4 and saying, “someone is missing there.” We finally decided that maybe he was right. Maybe he was seeing something that we were too scared to see. Maybe we were supposed to try again. Amazingly for us our same angel of a surrogate was willing to try again. And guess what, it worked – the first time! We had our Caroline in 2019!

I am now the proud mother of two beautiful children, my Carter and my Caroline, who I wouldn’t trade for anything in the entire universe. I’m more than a little bit obsessed with them! I tend to take a lot of pictures and videos of and with my kids. And now, you know why… Although I’ve been N.E.D. (No Evidence of Disease in the cancer world) since 2009, I like my family to have the ability to look back on our love and adventures together. And, I like to share the happiness we’ve found with others.

Struggling to grow your family is difficult, no matter the circumstances. My biggest piece of advice is to remember that there is no right or wrong way to add members to your family. What is a “traditional” family today anyway? Sometimes you have to open your mind and/or get creative. For now, remember that you can be a Mother in many ways. 

If you ever want to talk to me about my journey to motherhood, please reach out. I have personal experience with fertility preservation, adoption, and surrogacy (gestational & traditional) and would love to help support you during your journey in some small way. You can find me @cervicalcancersurvivor, @infertilitysurvivor, and follow my family @crystalcoastfamily.

Sending love to all of you Mothers out there – past, present, and future. Happy Mother’s Day to you all.

Love,

Kristin

Kristin Ferree was diagnosed with cervical cancer December of 2008, at the age of 25. After treatment left her infertile, she vowed not to let cancer keep her from her dream of becoming a mother. Now a 10-year Cervivor, she lives in Morehead City, NC with her loving husband, David, two miracle babies, Carter and Caroline, a sweet rag-doll kitty, Lilley, and a snuggly puppy, Toby. She is currently taking time off from being a Family Nurse Practitioner to spend more time with her children and loving every minute of it.

Without Patient Stories, We Walk into a Firefight with a Calculator

Storytelling is powerful. Storytelling is compelling. In this age of social media, stories have evolved from words and pages to photos, memes and videos. Unfortunately, “anti-vaccination activists have weaponized stories and weaponized misinformation” and have used their stories to undermine the broader adoption of the HPV vaccine around the world.

Dr. Noel Brewer, chair of the National HPV Vaccination Roundtable, shares why patient stories are essential to combating the anti-vaccination movement.

“Antivaccine activists rely on story telling. We scientists come back with statistics and numbers. While our statistics and facts may be true, they have little power in this arena. We walk into this firefight with a calculator.”

“In the real world, statistics and data don’t hold power, except on pages of a medical journal. What matters is people and their lived experience. Having powerful stories cuts through to what matters.”

Cervivor stories can help fight against the anti-vaccination narrative.

The power of the story in the hands of Cervivor can be used to grow cervical cancer awareness and expand HPV vaccination.

“Vaccine hesitancy is one of the global threats of public health. Legislators and policymakers increasingly seem to think vaccination is waning. That isn’t true. It’s just that the few anti-vaccine people are so loud. They have an outsized voice that is dangerous to the public’s health and well-being.” Their voice can cause people to hesitate, rather than to move forward with HPV vaccinations for their daughters and sons.

In the U.S., HPV vaccination is in fact drifting upward – around 66% of teens have had at least a dose, if not the full course, Dr. Brewer reports. “This is a big accomplishment. But our goal at the National HPV Vaccination Roundtable is to reach 80% having all the recommended doses. This vaccine will save tens of thousands of lives. It’s remarkable that people say ‘no’ to a cancer vaccine. The antivaccine movement and the stories and falsehoods they share play a role in that.”

We have to make our stories as loud and compelling as the stories of the anti-vaccine activists.

Dr. Brewer’s Advice to Cervivors: Have an Elevator Speech

“One thing I would encourage survivors to do: have the elevator speech of your story. There will be many many opportunities to tell your one minute version. It is not so often you have 20 minutes, or even five minutes. But when you introduce yourself, when you meet someone, when the opportunity arises, have your one minute story. Have a few different one minute versions of the different parts of your story. Talking about your lived experience is powerful, and you can have huge impact even in a short time frame.”

In fact, Dr. Brewer many times shares some of the one minute Cervivor Story videos on the CervivorTV Youtube channel. He and his colleagues have shown Lisa Moore’s video hundreds of times, at meetings all around the world, to focus audiences on “what really matters” when they are discussing the HPV vaccine. Lisa lost her life to cervical cancer in 2017, but her story has lived on in a hugely impactful way. All of our stories can have this impact too.

Do you have your elevator speech?

What will you share?

Tap in to Cervivor’s videos, resources and trainings to shape your story, enhance your advocacy and use your voice to end cervical cancer.

A professor of Health Behavior at the University of North Carolina Gillings School of Global Public, Dr. Noel Brewer studies health behaviors. He examines ways to increase HPV vaccine uptake, and his research led to the development of “The Announcement Approach” to train providers to communicate more effectively about HPV vaccination and other vaccines for adolescents. Dr. Brewer chairs the National HPV Vaccination Roundtable, which brings a wide cross-section of stakeholders together to raise HPV vaccination rates and prevent HPV-related cancers.

Know Your Existence: Becky’s ‘Why’

Back in September 2019, I attended Cervivor School to become an ambassador. I had no idea what to expect. I consider myself to be pretty sociable but I was beyond nervous and terrified when I stepped off the plane and landed in Chicago. As I’m checking into the hotel, who is the very first person I see, Tamika Felder. Even though she was running around making sure all the behind the scene details were perfect, she still took the time to hug me (pre-covid obvi ?) and made me feel so welcomed. I immediately felt a sense of ease and the nerves instantly turned into excitement. 


We had the pleasure of having, Roshanda Pratt as a guest speaker and she blew me away. She had us write down our “why statement” and then from there she wanted us to come up with three words that summed up our why. Know Your Existence is mine. I wanted my advocacy to be geared towards mothers – I wanted them to know that their life and checkups are equally as important as their families. I wanted minority women, especially in the Asian culture where below-the-belt talk is something that is rarely ever discussed, to be aware and know how important their checkups with their healthcare providers are.

I wanted women to Know Their Existence matters. 


Now I am amid a cancer reoccurrence and treatment. Who would have known that my own words now resonate specifically to me this time around. Know Your Existence, Becky. Push through, fight, give it your all, be your own advocate, speak up, research, question your doctors and live in the moment… Know Your Existence. 


My sister-in-law had these shirts made for me shortly after I returned from Cervivor School. She planned on surprising me with them but when we found out about the reoccurrence she sprang into action and had the women in my family take photos to show their support. I always talk about my amazing army of supporters and my Cervivor sisters are part of my tribe. I didn’t discover Cervivor until a month after my radical hysterectomy in August 2018 so to have the love and support from a group of women who just get IT has been a blessing this time around too.

Becky was originally diagnosed with cervical cancer in 2018, at age 35, and quickly became an active member of the Cervivor community, joining Facebook Group discussions, attending MeetUps, participating in the September 2019 Cervivor School and becoming a Cervivor Ambassador. She was diagnosed with a recurrence in late-2019, just weeks after returning from Cervivor School. Read her Cervivor story and learn how, amid this most recent diagnosis, her Cervivor Spark and passion to prevent other women from cervical cancer gets stronger each day.

“The Fire Gets Stronger Every Day”: A Recurrence Hasn’t Stopped This Cervivor from Educating, Advocating and Story Sharing

Becky Wallace, a young mother from California, came to Cervivor School in September 2019 to learn how to fully and effectively share her story. Just two months later, she faced a cancer recurrence. Amid this devastating news, Becky has shown our community what it means to embody the “Cervivor Spark.” 

“It wasn’t meant for me to just to get cervical cancer, and wipe my hands of it and move on,” without making a meaningful difference in the story of the disease, without taking action to help prevent it for others, says Becky.

Surrounded by family and friends, Becky shaved her head as she headed into chemo. “I shaved my head on a Sunday and woke up Monday with a whole new focus and whole new mindset. Ever since, I have this new fight in me and the fire gets stronger and stronger each day. I share my story so that this doesn’t have to be your story. Cervical cancer is something that is preventable and it is my job as a mom, a wife, friend, daughter and advocate to really put it out there.” 


See our powerful video of Becky finding and sharing her Cervivor Spark. Stay tuned for an upcoming blog featuring an interview with Becky who, in the midst of chemo, recently hosted an educational event at her home, speaking about her experiences, and calling on the women in her life and in her community to keep up with screening and vaccination.  

Becky understands the power of our stories to educate and to mobilize women to take action. If you haven’t yet shared your story on Cervivor.org, add your own!

No One Prepared Me for “The After” – A (Very) Candid Look at Life After Cancer

Treatment is over. Can you breathe a sigh of relief? Maybe. For a second. But I’m here to remind you that it’s not over yet. Probably not what you wanted to hear, huh? But I’m sharing this candid advice because no one prepared me for “the after.” The after treatment. The after cancer.  And boy, did “the after” knock me on my ass.

My family, who had come to stay with me during treatment, went home. I wasn’t going to the hospital every day anymore. I was left to just go on. 

Go on? 

Go on like it didn’t happen? 

I could barely walk up a flight of stairs, let alone do a load of laundry. I could barely eat anything. All I wanted to do was close my eyes. 

My mind would spin. I’d stub my toe and somehow, I would rationalize that I had cancer in my left pinky toe and my whole foot would have to be amputated! Rational thought went right out the window. 

And the tired, the oh so very tired…

Because even though the official treatment regimen is over, the radiation keeps working and will continue to work for 6 months at least. For me, it then took another 6 months to get any resemblance of energy back.

Those first months of The After are among the hardest cause you want to ‘bounce’ back and jump back into life. You want everything to go back to normal, yet you want and need to do it all different all at the same time.  How the hell do you do that? Especially when the fatigue continues and you can barely get up off the couch (except to dart to the bathroom before you poop your pants.)

Don’t beat yourself up about it. Easy to say, hard to do, I know. My advice? Allow yourself to just be. Realize that it’s okay to not be okay. Most of all, be gentle with yourself.

Samantha, enjoying some of the creative healing of woodworking.

You have just either had your insides ripped out or got repeatedly zapped with radiation. The toll of treatment is a heavy load. Give yourself some credit. You’ve paid the price and you can now cross the bridge to life after treatment. You are on that other side, but on that other side…

The fatigue is real.

Brain fog is real.

Those hot flashes, night sweets, insomnia, vaginal dryness and memory loss is real. 

The continued bowel explosions are real.

Bladder leakage is real.

The crushing reality of infertility is real.

Also real – and sometimes, debilitating – is the fear and “scanxiety” and the questions that always lurk in the shadows of our minds:  

Is it still there? 

Did it come back? 

Will it come back? 

Every pain, every ache, every spot of blood turns your mind into rapid fire AK-47 of fear, anxiety, panic and then depression because you’re exhausted and just can’t handle anything on top of the already immensely heavy load.

Rest assured, you are not alone in any of these feelings. 

And you know what? 

It’s okay to not be okay sometimes.

I’ll say it again: it’s okay to not be okay.

A few tidbits of advice from someone who has been in “The After” for eight years and counting:

  1. If you need a little medication or talk therapy to get you through the crazy roller coaster ride of The After Life, get it! You don’t have to stay on it forever if you don’t want to, but antidepressants can help you ease some of that mind-spin so you can make some sense of what is going to be your new life. Antidepressants and therapy helped me. I was not okay, and there was no shame in that. I just needed help to realize that and get through it. 
  1. Don’t feel guilty or ashamed for taking care of your head too, now that you are done with that treatment for your physical body. It might take every ounce you have left in you to make one more appointment, to a one more doctor, for one more thing. I can tell you, it’s worth it to push yourself to make that call to see about your mental health. Not sure where to start? Your social worker at the hospital may also have a list of therapists and psychiatrists that specialize in cancer patients.
  1. Vent! Let it out! You can vent here with the Cervivor community or with friends or in a journal. I guarantee one of us can relate to how you are feeling. Those feelings have the most power over you when you keep them inside. So share them. Or write it in a journal and then burn the pages. Get it out of you!  That dread. That doom. That weight. That worry. It only has power when it’s held inside. Get it out of you and then you won’t have to carry it alone.
  1. Be gentle with yourself. My sister told me that (when I was venting to her!). I didn’t fully absorb it when she said it, but I fully believe and appreciate that advice now – so much so that I have it tattooed on my hip as a physical and spiritual reminder. It’s okay to not be okay, and to give myself a break, and give myself some credit.  Things will get better in time…and sometimes time…just needs time.

Cancer survivor Samantha is a wildlife ecologist in San Diego, CA. When she is not protecting sea birds and restoring habitat for sea ducks injured by coastal oil spills, she volunteers with Burning Man and has attended the art festival five times. Samantha encourages women undergoing cervical cancer diagnosis and treatment to start therapy well before “The After” to head off (or at least lessen) many of the emotional issues she went through. Samantha encourage women to start a conversation with the social worker at their hospital, or to visit the “find a therapist” page on psychologytoday.com.

Read Samantha’s Cervivor story.

AYA Week Reflections

As AYA Cancer Awareness Week draws closer, I am reflective on how much the AYA cancer community means to me. I recall how for two years after treatment, I didn’t even know this community existed and how today, I can’t imagine my life without it.

During my treatment in 2013, I didn’t want any part of the AYA cancer community because I didn’t want to be labeled as the girl with cancer. I did not want to be the youngest cancer patient in the radiation waiting room, or to be told yet again that treatment would be easy because I was young (by the way, it wasn’t), or to become more familiar with insurance deductibles and FMLA than someone twice my age. I just wanted my pre-cancer life back. I wanted to go on dates, to go to the state fair without the worry of being immunocompromised in a large crowd, and to be able to eat whatever I wanted without getting sick.

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I first met a fellow AYA cancer survivor two years after my treatment and it changed my life. I was no longer alone. Someone finally understood me. I had a community and I felt like I belonged for the first time in a long time. Alongside other AYA cancer patients and survivors, I was able to process what I had just gone through and I gained knowledge about what survivorship should look like. This growth gave me a sense of purpose as an AYA cancer survivor that I needed.

Today, I am a seven-year AYA cervical cancer survivor. I share my story with a lot less fear than I did five years ago because I want people to see that I am what an AYA cancer survivor looks like. I want people to know that a cancer diagnosis in your 20’s and 30’s is difficult to navigate, not only during treatment but as a survivor. I also share my story with medical professionals so that they can better understand the unique needs of the AYA cancer community. And I mentor AYA cancer patients and survivors, so they don’t feel the loneliness that I felt during and after treatment. No one should go through cancer alone.

I’ve watched the AYA cancer community grow since 2015 from a few scattered voices to one loud collective voice. This community’s advocacy and momentum has generated much needed attention and change that will impact not only our lives, but the lives of future AYA cancer patients and survivors. During AYA Cancer Awareness Week, we deserve to recognize and celebrate our community’s accomplishments.

Emily Hoffman is a seven-year cervical cancer survivor who was diagnosed with stage 2B cervical cancer at age 30. After cancer, Emily didn’t realize she even had an advocacy voice until she attended her first Cervivor School in 2016. Today, she is a patient advocate and active Cervivor Ambassador who shares her cancer story to raise awareness for ending cervical cancer and to educate others on the importance of cervical cancer screenings and prevention. Emily is the recipient of the 2020 Cervivor Spark Award. She is currently pursuing her certification to become a cancer registrar.

New Merch Alert!

We went live yesterday to let the cat out of the bag… We have new merch in the Cervivor Shop! Check out all the cute items and be sure to go get your swag, ASAP!

Cervivor Beanie Modeled by Cervical Cancer Survivor, Tracy C.

Cervivor Neck Gaiter/Hair Buff Modeled by Lead Cervivor Ambassador and Cervical Cancer Survivor, Carol L.

Cervivor Mask – Comes 3 to a Pack!

Cervivor Sportswear Hoodie – Has BOTH Chest and Arm Design on it!

Women’s V-Neck Hoodie – Acid Wash and Contrast Sleeves.

For more Cervivor Swag, visit the shop here.

Want to see something else in our shop? Send your design and product information to [email protected]. If we pick your design, you will be gifted one as a thank you!

It’s time to stop leaving women behind when it comes to cervical cancer screening – USA Today

March has been a crazy busy month for Cervivor and for the visibility of cervical cancer prevention. An international awareness day! An editorial in a national newspaper! A piece of legislation introduced in Congress! As the month draws to a close, here is a recap:

An International Awareness Day

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The month kicked off with International HPV Awareness Day on March 4. The day featured online events, press conferences, webinars and more taking place around the world.

The awareness day may have come and gone, but the International Papillomavirus Society, the official sponsors of the day, have terrific posters and visuals you can download and share at any time. Their graphics can be be a great addition to your social media feeds!

An Editorial in a National Newspaper: USA Today

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Also in March, USA Today featured an editorial on the importance of cervical cancer prevention co-authored by Cervivor founder Tamika Felder and Anna Giuliano, Ph.D., the founding director of the Center for Immunization and Infection Research In Cancer at Moffitt Cancer Center. The editorial highlighted the need for more proactive screening in uninsured/underserved communities and expressed frustration at the lowering of cervical cancer screening goals in the recently-released “Healthy People 2030” national public health initiative. The editorial offered a strong call to action: 

“Decades of groundbreaking research have provided the tools to eliminate cervical cancer. Yet, every two hours a woman in the U.S. dies of this preventable cancer. It is time to stop leaving women behind and work collectively to get every woman, regardless of race, ethnicity, and socioeconomic status, up to date with cervical cancer screening. Let’s create a national goal to achieve cervical cancer elimination, a strategy for the U.S. to accomplish this goal and a revision of the Healthy People 2030 objectives.”

Share the article on your social media feeds. Make sure to highlight your personal passion for this issue and your involvement with Cervivor!

Legislation Introduced in Congress

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The “Promoting Resources to Expand Vaccination, Education and New Treatments for HPV (PREVENT HPV) Cancers Act”  was introduced in Congress in March.  Cervivor was quoted in the press release announcing the bill. This legislation would, if enacted in the future, address many of the education and health equity needs surrounding cervical cancer prevention.

Our voices and our stories and our advocacy will be important to move this bill forward. The introduction of a piece of legislation is only the start of a long chain of legislative steps that can ultimately lead to bill passage (or not). Bill passage can take years. Bills can get folded into other legislation. Bills can get debated by committee but never elevated to the House or Senate floor for a vote. In this case, the bill was sent to the U.S. House Energy and Commerce Committee, but so far, there is no companion measure over in the U.S. Senate. So there is a long road ahead… 

On the other hand, the introduction of a bill is itself a win! It means that members of Congress and their staff are paying attention to this issue, and Congressional attention can translate to media attention and enhanced media coverage. It means that there will be future conversations as the Congressional sponsors seek other co-signers and supporters. We at Cervivor, are in it for the long haul, advocating and  sharing our stories.

Hi, I’m Morgan

Hi There!

My name is Morgan Newman. I’m a metastatic recurrent cervical cancer survivor and Cervivor Ambassador located in Iowa. I am thrilled to be jumping onboard as the Community Engagement Liaison with the Cervivor team! I have been involved with Cervivor for nearly four years. Time sure has flown right on by! You see, I have been passionate about cervical cancer awareness and cancer prevention ever since I stepped foot into a Cervivor School session.

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I knew I had a voice, but I wasn’t aware of how I could amplify it to make a difference. Cervivor taught me what I needed to know, and I continued to grow with the organization. It helped me – become such a strong, informed advocate – eventually leading me into winning several awards. In 2018, Cervivor recognized me as the Cervivor Champion recipient. In 2019, I was recognized by the Iowa American Cancer Society Cancer Action Network as the Advocate of the Year and in 2020, I was awarded as Above and Beyond Cancer’s Advocate of the Year. I am truly grateful to wear these honors. For more of my cancer story, be sure to check it out here.

If you know about Cervivor, then there is no doubt in my mind that you know just how awesome the organization is. Really! I have seen this community grow and thrive since I joined in 2017. We take pride in what we do! Sure, we celebrate the big stuff, but we never forget to include the small stuff too! We focus on developing various programs and events for our community based on its current needs.

We all know how difficult last year was. Each one of us experienced some form of loss whether we acknowledged it or not. It was during our Cervical Cancer Awareness Month (CCAM) committee planning sessions this year that we really wanted to bring the focus of community and support into everything that we did. This warms my heart and drives my passion even further. I am a social worker by trade, and I can’t wait to bring my expertise to the table. I believe in the strength of a community. I believe in human rights, diversity, and inclusion. I believe that we all have a story to tell, to be seen, to be heard, and how we, collectively, can make change happen. I know we can make it happen because we are already doing it. Ending cervical cancer is within our reach!

I welcome you to connect with me on my social media platforms. You can find me on Facebook, Instagram, Linkedin, and Twitter. If social media isn’t for you, contact me via email at [email protected]. I want to know what you like about Cervivor, what we can work on, and if you have any ideas you want to see come to fruition – Let’s make it happen! I want to hear from you!
 

Best Wishes,


Morgan Newman, BSW, MSW Candidate 2021
Cervivor
Community Engagement Liaison
& Cervivor Ambassador
2018 Cervivor Champion
2019 ACSCAN IA Advocate of the Year
2020 Above & Beyond Cancer Advocate of the Year
Read My Story Here

Walk a Mile in My Shoes

To me this is a no-brainer: when a person has a chronic medical condition that they manage every single day, it does NOT mean they are supposed to stay in bed for the rest of their lives. At the same time, it also doesn’t mean they should extend themselves to the point that they are just making their condition worse by pushing thru pain to be “tough” or “brave.”  Some conditions will get progressively worse if you don’t adjust your lifestyle and take preventative measures.

I speak from experience. I have lymphedema in both of my lower extremities. Most recently, I have been battling what we think is neuropathy. The latter is much more painful to me than the lymphedema, but I’m not even sure what is what when it comes to the pain. All I know is that it hurts terribly.

I enjoy walking. That is one of my favorite stress relievers and a way that I stay physically fit. Gaining weight is very bad for my lymphedema so I try to stay moving, even if they are short now because of pain. Still, I do many things to keep myself smiling and positive because if you don’t have your mental health at the end of the day, what do you have?

Anyone that battles lymphedema or neuropathy knows it is a constant balance between sitting and standing. When I’m having a “bad day” my medical paperwork says I’m supposed to only work for four hours a day, three days a week. If I’m having a “really bad flare up,” I am supposed to keep my legs elevated all day. We all know that’s not feasible when you are trying to work every day and show up for your employer. It’s very stressful constantly trying to play catch-up and run out the door for another doctor’s appointment.

Someone made a comment to me the other day that really hurt my feelings (I cried). In short, they questioned how I could be out and about and yet still be so “sick.”  I have since processed it, and I realize that anyone that questions my pause from teaching does not know my struggles or my story. They do not know medically what is going on with me. For them to assume that I am “supposed to” stay in bed and not go on a walk or do anything fun, well that would also be detrimental to my mental health.

They are not in my shoes. They probably couldn’t even find my shoes on the shelf. If they could, they would know this:

I am constantly worried that I might have an accident because that’s what now happens sometimes because of the radiation to my bowels. It is very common among women like me who have withstood grueling treatments for cervical cancer. It’s a nasty side effect. God Bless Imodium!  Fellow Cervivors and I jokingly say that we need our own diaper bags. We can laugh about things such as bodily functions, but it doesn’t mean it’s fun or funny. It never goes away. We are just lucky to have a sense of humor about it because at the end of the day, what else can we do?

When you ask me to go boating or out to dinner, I worry that I will ruin the fun because my feet/legs will hurt and I won’t be able to even focus on the conversations around me. The pain can make me nauseous and I feel like I want to throw up. Sometimes my eyes will randomly tear up just because I’m so tired of the gig. But the gig is my life so I can’t take a vacation from myself.

When I’m trying to get to work on time, I may seem frazzled when I arrive, It’s not because I’m not trying my best. Some mornings the thought of standing hurts before I even get out of bed because I know what it’s going to feel like when I do. Sometimes I’m changing my clothes at the last minute because I had an accident as I was walking out the door. Such fun! At any random time that you are with me, I’m probably fantasizing about taking a hot bath. There’s something about chronic pain, stress, and physical exhaustion. Bad recipe.

Before you judge me (or anyone!) and try to critique me based on your idea of what a “sick person” does with their lives, try to put yourself in my shoes. You truly don’t know, unless you have lived it. Take a walk with me and let’s see what happens!  Remember, you don’t know my reality until you have actually walked a mile or two with me or next to me. This post isn’t just for my own situation, but it’s for all of us cervical cancer survivors and those with chronic pain or chronic illness who have dealt with the judgement of others.

I’m posting about this, because I’m trying to create awareness and empathy. People are beating cancer much more than they did decades ago. Yet with surviving comes long-term side effects that sometimes become progressively worse with time. Our bodies know the score. When discussing taking a break from work, a coworker said to me, “your body already made the decision for you.” She’s right. It did. And I had to take something off my plate so I could feel better physically/emotionally. I’m taking a knee right now for myself. And no, I will not be staying home in bed in a dark hole every moment of my life. I will keep on living and enjoying this life that I have fought so hard to enjoy. I am a real person and this is my life. Thank you if you are someone that understands. I love you. If you are part of my amazing tribe and you don’t feel you understand, please just ask in a supportive and loving way.

Shawna Christy, 46, was diagnosed with cervical cancer in 2005. Treatment included removal of her cervix, uterus, 1/3 of her vagina and more. Though surgery and radiation helped her beat cancer, “the hard parts came later” – like chronic pain together with PTSD and the emotional, hormonal and spiritual challenges of being a cancer survivor. Shawna plugged into Cervivor for community and support. In 2016 she attended Cervivor School and became a Cervivor Ambassador who uses her voice and her experiences to open conversations and “change the narrative.” She lives in Ottumwa, is a proud mother of daughter (Korynn, 18) and son (Kyler, 16). She is grateful for time with her besties and husband, Allen. This year she is taking time off from teaching first grade to focus on her health to better manage her pain.

Read Shawna’s Cervivor Story or her previous blog “Cerviving with Lymphedema”

See other Cervivor blog posts about lymphedema: “My Under Armor: Do you know about lymphedema?” by Heather Banks

My Social Work Story

Morgan and her closest friends during a “night out.”

My social work story began in 2014 with a decision to go back to school. Little did I know, I was to be diagnosed with cervical cancer during my second semester. The diagnosis disrupted my life and turned it upside down. I was your typical “social” 24-year-old who loved going out with her best friends; a young professional working full-time as a dental assistant; and an ambitious nontraditional student attending school full-time.

Looking back, I really don’t know how I managed it all but in reality, I think it’s what kept me going.  I had something to look forward to in the future and helping people was my reward. Unfortunately, my cancer story didn’t end there. Nearly a year after my initial diagnosis, I was given a second cancer diagnosis. This time it was metastatic recurrent cervical cancer in my lungs. Even though the chemo was heavier and my body was impacted more, I did not quit.

Morgan cuddled up to her dog, Sassy, after a long day of classes.

I finished my treatments and graduated with my Associates in Liberal Arts just two weeks shy of entering the bachelor’s program at the University of Iowa School of Social work. I was terrified that I wasn’t going to be able to retain the information, but I proved myself wrong rather quickly. In the program, we were trained rigorously. We dove deep into the biopsychosocial aspects of humans. We were required to have a deeper knowledge in cultural competence and were faced to see our own implicit biases. After, we would process through as a cohort to understand why and have the opportunity to learn from each other.

Morgan posing with Herky on the University of Iowa Campus in Iowa City, IA.

After two years of a fast-paced program, I graduated with my Bachelor’s in Social Work. Then I immediately entered the Master’s program with the University of Iowa School of Social Work. When I started the program, I had the passion to be a medical oncology social worker. I wanted the opportunity to work with cancer patients and their families. I wanted to give back after getting through my own experience, however, after being in a macro-level program, it shifted my mindset on how I could still work with the population of my choice while advocating and creating change in the cancer community.

            It’s no secret that I fell in love with advocacy and what it is on a day-to-day basis. You see, I found Cervivor and attended a Cervivor School in the summer of 2017. I learned how to use my voice as a patient advocate and it only amplified as I became an educated social worker. It led me to becoming the 2018 Cervivor Champion Award Recipient, the 2019 Advocate of the Year for the Iowa American Cancer Society Cancer Action Network, and the 2020 Advocate of the Year for Above and Beyond Cancer.

After accepting the Cervivor Champion Award at the 2018 Cervivor School in Cape Copd, MA.
Volunteers with the American Cancer Society Cancer Action Network during the Iowa Day at the Hill event in 2019.
Dr. Richard Deming and Morgan filming the award segment for Above and Beyond Cancer in 2020.

My love for advocacy, cancer prevention, and macro-level social work falls right into place within the nonprofit world. We know nonprofits are vital to communities and often help build resiliency skills, raise awareness to specific issues, and make change happen. Social workers are a common thread amongst nonprofits and are community-based professionals. We assess the needs of the communities we serve, identify existing barriers, and develop sustainable programs or resources.

As I am stepping into the Community Engagement Liaison role for the organization, I look forward to serving our community. I intend to emphasize the importance of the word community and what it means to us as a whole. To listen to the needs of our community and bring support, resources, and programming to fulfill those needs. And last, but certainly not least, to continue raising awareness about our greater mission: “Ending cervical cancer is within our reach.”

Morgan is a metastatic cervical cancer survivor, Cervivor Ambassador, and a 3x award winning patient advocate. She lives in Iowa and is currently in the last two months of finishing her Masters in Social Work with the University of Iowa. She continues to advocate tirelessly in hopes her story can help others.

Remembering Holly Lawson

Today we are remembering a shining light within our community, Holly Lawson. 

Holly Lawson at Cervivor School 2017 Delray Beach, Florida

Holly elevated our Cervivor community with her fierce commitment to making sure her voice was heard. She never wavered in her advocacy and she always lifted others in the process. She connected with and inspired so many that we felt it important to share those memories today.

Holly Lawson 1978 – 2020

Holly’s Southern charm made her so likable and approachable; she naturally drew you in and captivated you with her activism towards making this world better. She worked hard to expand Cervivor’s reach, always knowing that the power of our collected stories made a difference. She mentored many in our community and always said that Cervivor gave her story ‘wings’.   

HPV Roundtable: https://cervivor.org/the-national-hpv-vaccination-roundtable-2018/

One thing Holly never shied away from was sharing the true realities of cancer and cancer side effects. She was always her authentic self and her voice and messages resonated with so many. 

“I want my story and even my pain to inspire others.” 

Holly Lawson

Holly & Dilators: https://cervivor.org/dilators-after-cervical-cancer/

Cancer Broke My Cup: https://cervivor.org/cancer-broke-my-cup/

As we take time today to remember our friend and fellow advocate, we do so with equal parts joy and sorrow. Joy for what Holly gave us while she was here. Joy for all that we carry in our hearts and in our mission. And sorrow for knowing that cervical cancer continues to take our sisters, friends, aunts, mothers, grandmothers, our loved ones.

Holly left us a legacy of inspiration and dedication to ending cervical cancer that we will carry forward. Please share your memories of Holly with us. 

Your Pap Test Came Back “Abnormal”. Now What?

Nobody looks forward to getting a Pap test, but we women get them regularly – or SHOULD get them regularly because Pap tests are crucial to preventing cervical cancer. We at Cervivor want to make sure that women understand what a Pap test does, what it is looking for and what “abnormal” results may mean. Afterall, if your Pap results came back abnormal, it is important to understand what that means and what steps to take next. 

What exactly is a Pap test?

A Pap test looks for abnormalities and precancerous cell changes in the cervix. If not treated, these abnormal cells could lead to cervical cancer.

Each year, more than 50 million Pap tests are performed in the U.S. to screen for cervical cancer. An estimated 3 million of these Pap tests (5%) are read as abnormal. In fact, approximately 20% of American women have had at least one abnormal Pap test result in their lifetimes, though in the majority of cases, the abnormal cells are the result of a bacterial or yeast infection and are not pre-cancerous or cancerous. While less than 1% of abnormal Paps result in a cervical cancer diagnosis, up to 1 million Paps find early, potentially pre-cancerous cells that can be easily removed before they progress. This is why follow-up of abnormal Pap results is critical!

Pap test results will come back to your doctor as either:

  • Normal. The cells collected from your cervix during the Pap test look like they should.
  • Unclear. If results are unclear, your doctor may do more testing right away to rule out any problems, or your doctor may have you come back in 6 months or a year for another Pap test.
  • Abnormal. The cells collected from your cervix during your Pap test look abnormal. The first thing to keep in mind: abnormal Pap test results do not mean you have precancer or cancer. Sometimes the changed cells are due bacteria or yeast. But important follow-up tests will need to be done to get more information. 

What are some of the follow-ups for abnormal Pap test results?

You may need more tests to find out if you have an HPV infection and/or to find out how severe the cell changes are. For example, your doctor may do:

  • An HPV test. Like a Pap test, an HPV test is done on a sample of cells taken from the cervix to see if the abnormalities were caused by infection with any of the types of human papillomavirus that are linked to cervical cancer. 
  • Another Pap test in about 6 to 12 months (“watchful waiting”).
  • A colposcopy, a test to look at the vagina and cervix through a lighted magnifying tool. 

What does a colposcopy look for?

A colposcopy is when a microscope (colposcope) with a strong light will be used to look at your cervix. Hundreds of thousands of colposcopies are performed in the U.S. each year. If any abnormal areas are identified, the doctor may take a small sample of tissue (“biopsy”)  from the cervix for closer examination. A biopsy is similar to a small pinch in terms of sensation and shouldn’t be too painful. The purpose of a biopsy is to confirm whether your screening test has been correct in identifying a problem. 

The colposcopist will usually be able to tell straight away if there are abnormal cells in your cervix, but biopsy results can take a few days to a few weeks to receive. 

Understanding the Language Used to Describe Cervical Cell Abnormalities

Treatment, if any, will depend on whether your abnormal cell changes are mild, moderate, or severe. Pap and biopsy results reports commonly use these terms to report the severity of cell changes:

  • Mild: ASC-US or ASC-H. These are changes for which the cause is unknown. ASC-US (atypical squamous cells of undetermined significance) changes usually stay the same or return to normal. ASC-H (ASC that cannot exclude high-grade squamous intraepithelial lesions) changes are also minor but have a higher likelihood of becoming more serious. 
  • Mild: LSIL (low-grade squamous intraepithelial lesions). These changes, also known as CIN 1 (cervical intraepithelial neoplasia) are mild but may be more likely to become more severe over time, though could return to normal. 
  • Moderate to Severe: HSIL and AGC: These moderate to severe cell changes require follow-up. HSIL (high-grade squamous intraepithelial lesions) and atypical glandular cells (AGC) may also be referred to as CIN II and CIN III are more likely to be precancerous and turn into cervical cancer if left untreated.
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Treatments to remove abnormal, precancerous cells:

The good news is, abnormal or precancerous cells can be removed from your cervix. Your doctor will likely recommend one of the following procedures:

  • LEEP (loop electrosurgical excision procedure): A thin, low-voltage electrified wire loop is sued to cut out abnormal cervical cells. 
  • Laser or “cold-knife” conization (also referred to as a cone biopsy): A laser or scalpel (“cold-knife”) removes a cone or cylinder-shaped piece of the cervix.
  • Laser therapy: A tiny beam of high-intensity light vaporizes and destroys abnormal cells.
  • Cryotherapy: A very cold probe freezes and destroys abnormal cells.

There is a wealth of information out there from the American College of Obstetricians & Gynecologists, from the Foundation for Women’s Cancer and of course, from Cervivor. 

As a community of cervical cancer survivors, we encourage you to stay calm, ask questions, and be diligent about your follow-up testing.  

A History of Impact, Yesterday and Today

As Black History Month (February) comes to a close, and Women’s History Month (March) begins, we thought we’d take a walk through history and share some key Black, female leaders in the field of medicine and cancer research. 

First Black, female physician in the U.S. 

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Rebecca Lee Crumpler, MD (1831 — 1895) worked as a nurse for eight years in Charlestown, Massachusetts.  Because this was in the 1850s, she was able to work without any formal training (keep in mind the first nursing school opened in 1873).  She was admitted to the New England Female Medical College in 1860.  She graduated a few short years later in 1864 becoming the first African American to graduate from the New England Female Medical College as well as the first Black woman to earn a medical degree.  When the Civil War ended in 1865, she moved to Richmond, VA and joined other black physicians to care for freed slaves who would otherwise have had no access to medical care. She worked with the Freedmen’s Bureau, as well as missionary and community groups, even though black physicians experienced intense racism working in the postwar South.

First Black licensed nurse

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Mary Eliza Mahoney (1845-1926) knew at a young age that she wanted to be a nurse.  She had early jobs at the New England Hospital for Women and Children, working as a janitor, cook, and washer women, then got the opportunity to work as a nurse’s aide. She applied and was admitted to the facility’s nursing school (one of the first in America) in 1878.  It is said that 42 applicants were admitted to the program and only four completed the 16-month program.  Mary was one of the four and would become known as the first Black licensed nurse.  She followed a career in private nursing due to the discrimination she faced as a public health nurse. She retired from nursing after dedicated 40 years, however, she didn’t stop advocating for equality. Mary was a Women’s Rights activist.  After the 19th Amendment was ratified, she became one of the first women to register to vote in Boston! 

Founder of the first hospital for African Americans in Atlanta

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Dr. Georgia Rooks Dwelle (1884 – 1977) attended Spelman College and in 1900 she became the school’s first graduate to go on to medical school. After completing her degree, she returned to her home state of Georgia and received the highest score on the Georgia State Medical Board examination that year. She became one of only three African American women physicians in Georgia at that time. When she settled in Atlanta, she witnessed first-hand the dire poverty and terrible conditions in which many of the city’s poorest Black residents lived and the lack of medical care they received. She was determined to set up a practice where conditions would be sanitary and proper services would be offered. Her initiative started with just a few rented rooms and grew into Atlanta’s first general hospital for African Americans, the Dwelle Infirmary.  She continued expanding services for the hospital and by 1935 had a well-baby clinic, a clinic for venereal disease, and a ‘Mother’s Club’ for African American women.  

First woman president of the New York Cancer Society

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Dr. Jane Cooke Wright (1919 – 2013) was the daughter of the first Black graduate of Harvard Medical School, Louis Tompkins Wright.  She graduated from New York Medical College in 1945 and was hired as a physician with the New York City Public Schools. She decided to work with her father, who was serving as the director of the Cancer Research Foundation at Harlem Hospital.  Chemotherapy was experimental at that time, and as a team they began testing anti-cancer chemicals and helping patients achieve some remission.  Following her father’s death in 1952, Dr. Jane Wright was appointed head of the Cancer Research Foundation, at the age of 33. She went on to become the director of cancer chemotherapy research at New York University Medical Center and was appointed to the President’s Commission on Heart Disease, Cancer, and Stroke by President Lyndon B. Johnson. In 1971, Dr. Wright became the first woman president of the New York Cancer Society. At a time when African American women physicians numbered only a few hundred in the entire United States, Dr. Wright was the highest ranked African American woman at a nationally recognized medical institution.

Making Impact Today

These trailblazers of the past helped pave the way for the trailblazers of today, such as:

At the forefront of COVID-19 vaccine development

Dr. Kizzmekia “Kizzy” Corbett is at the forefront of COVID-19 vaccine development. A viral immunologist at the Vaccine Research Center at the National Institute of Allergy and Infectious Diseases, National Institutes of Health, she is one of the leading scientists behind the government’s search for a vaccine. Corbett is part of a team at NIH that worked with Moderna, the pharmaceutical company that developed one of the two mRNA vaccines that has shown to be more than 90% effective. Today, together with her research Corbett is taking on another challenge: tempering vaccine hesitancy by talking about COVID-19 science in communities of colour.

Developing cancer therapies with lasers and nanoparticles

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Dr. Hadiyah-Nicole Green, age 42, is one of the first African American women in the nation to earn a Ph.D. in physics, holds the distinction of being only the second African American woman and the fourth African American to receive a Ph.D. in physics from the University of Alabama at Birmingham (UAB). Today, Dr. Green specializes in developing targeted cancer therapies using lasers and nanoparticles. Her expertise lies at the intersection of nanotechnology, immunotherapy, and precision medicine with a focus on developing a new cancer therapy platform that uses laser-activated nanoparticles to completely eliminate tumors after a single treatment. Beyond her academic work, she founded the Ora Lee Smith Cancer Research Foundation – named in memory of her late aunt who raised her. Dr. Green has intertwined her life’s work and professional focus into the mission of the organization: to change the way cancer is treated and reduce the suffering of cancer patients by providing a treatment that is accessible, affordable, and most importantly, effective. 

Applying computational modeling to cancer therapies

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Stacey D. Finley is a professor of biomedical engineering at the University of Southern California, where she leads the Computational Systems Biology Laboratory. She applies computational modeling to study  biologic processes that underlie cancer, such as angiogenesis, metabolism, and immunotherapy. The biochemical networks that regulate these processes involve numerous cell types, molecular species, and signaling pathways, and the dynamics occur on multiple timescales. Therefore, her systems biology approach, including experiment-based computational modeling, is required to understand these complex processes and their interconnectedness in cancer, her research website explains. Models can simulate biological processes, test interventions and  identify which tumors will respond favorably to a particular therapy, aiding in the development and optimization of effective therapeutics.

These are only just a few of the incredible Black, female medical pioneers we decided to highlight.  Let’s take a moment to celebrate these individuals and their impact.  Their legacies will carry on serving all of us for many years to come.  

Three Years Ago, a Capitol Hill Visit Pushed Me Out of My Comfort Zone

This month marks three years since my first advocacy experience with Cervivor. Three years ago, in February 2018, I  jumped completely out of my comfort zone, boarded a plane alone, and flew to Washington DC to meet up with a group of women I’d never met to advocate for cervical cancer screening guidelines on Capitol Hill.

I had absolutely no idea what I was getting myself into, but I never could have imagined the empowering and validating journey the decision to take part in that “Cervivor’s Lobbying Day on the Hill” would mark the beginning of. 

Tracie meeting with legislators on Capitol Hill in 2018.

Despite never having met any of the other women in person, I was instantly at ease with each of them. Experiencing the positivity of the  relationships that can develop when you have a common goal, passion, and past is something I will forever be grateful for. I’ve never forgotten the feelings and emotions of my first Cervivor experience and the deep connections that so quickly evolved!

My “why” was formed as I realized our stories were being heard.

My “why” was fueled as I realized that our stories mattered and held the potential to evoke change. 

Prior to this trip, my experience with Cervivor was online chats and questions with our late lead ambassador, Erica, who actually introduced me to Cervivor. I’d read tons of the posts on the Cervivor groups on Facebook but had engaged in only limited interaction. That has since changed! This group was – and still is –  better than Google when something felt off or when I just needed advice on navigating my cancer journey. 

Prior to this first advocacy experience, I’d known deep down that I needed to tell my story. I knew enduring, and surviving, two battles with cervical cancer by age 31 was bound to have a greater purpose. I had tossed around the idea of blogging a little here and there, and I had  told parts of my story once at a local breast cancer event. What I had done the most of though, was question if my story was something anyone outside of my immediate family and friends would ever need or want to hear. I no longer question that.

Three years ago, during this quick trip to Washington, DC,  I learned the importance of sharing my story. Of sharing OUR  stories. I learned how much more impactful it is to advocate with others. The diverse paths of our cancer journeys spoke volumes to the ears they fell on. I learned firsthand how we truly are stronger together.

My fellow Cervivors at Lobby Day 2018, and my “Why” today.

I am personally stronger, bolder and more confident as a result of my connection with Cervivor. Today, I continue my mission for the women in this photo. Too many lost their lives to cervical cancer. Holly. Teolita. Brittany. Today, they are a core part of my “why” – why I’ll keep story sharing and educating and advocating. They were a lifeline for me that day on the Hill and beyond. I continue for them. I continue for me. I continue for women everywhere who we can protect from cervical cancer.

My kids are also a big part of my “why.” As a mom of two boys, I want to shout from the rooftops that the HPV vaccine is safe and effective not only for girls, but also that we should consider it our parental duty to vaccinate our BOYS, too! This is part of my story now, and how I use my voice and my story to make change.

Remember, there will always be someone that needs to hear your story. Someone somewhere will always find hope in reading or hearing your story. Someone will always find themselves being educated through your story. If you haven’t done so, take a leap outside of your comfort zone and share your story today at https://cervivor.org/stories/.

Tracie lives in Alabama with her husband and two boys. She was originally diagnosed with stage 1b cervical adenocarcinoma in November 2013 just before her 28th birthday and had a recurrence in 2016 at the age of 31. Tracie has been an active advocate, using her voice and her story to educate her community about cervical cancer prevention. Read some of the news articles that have resulted from her outreach.

Read Tracie’s Cervivor Story

Black History Month and the Disparities Still To Overcome

As we discussed in an earlier post, advancements in the understanding of cervical cancer and the invention of the HPV vaccine are inextricably intertwined with Black History Month (February). Why? Because the “HeLa cells” used in groundbreaking scientific research were from the cells of Henrietta Lacks, a young Black woman who lost her life to cervical cancer in 1951 and whose cell lines have transformed modern medicine.

While HeLa cells were critical to the science that led to the HPV vaccines that have the power to prevent cervical cancer, today Black women in the U.S. bear a disproportionate burden of cervical cancer. Although  cervical cancer occurs most often in Hispanic women, Black women have lower 5-year survival rates and die more often than any other race.  In fact, they have nearly twice the cervical cancer mortality rate compared to white women. 

Why?

Interestingly, while most women with cervical cancer were probably exposed to cancer-causing HPV types years before, on average, Black women do not receive a diagnosis until 51 years of age. That compares to white women who have a median age of cervical cancer diagnosis at 48. Those three crucial years could make the difference between a treatable versus terminal cancer.

Why?

Researchers have reported that due to social and economic disparities, many Black women do not have access to regular screenings. Screening programs often fail to reach women living in an inner city or rural areas because of lack of transportation, education, health insurance, primary care providers who can perform cervical cancer screenings, or availability of nearby specialists for follow-on care.

How can we make a meaningful difference? 

The underlying causes of health disparities are complex and are multi-layers with lifestyle factors (obesity, cigarette smoking, etc.), socioeconomic factors (access to health insurance, access to healthcare providers), representation in research (clinical trials), and much much more. Yet there are still meaningful ways to make a difference.

Help increase screening rates.

Increasing screening rates could greatly reduce deaths from cervical cancer among Black women, Hispanic women and other underrepresented communities. This requires the delivery of interventions directly to underserved women such as screenings based at accessible locations closer to their places of residence – such as via mobile vans and/or screening locations at local community centers instead of medical clinics. This can substantially lower cervical cancer mortality rates through early detection.

The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) has programs – and importantly, partnerships – in place across states, territories and tribal lands.

For example, in South Carolina, NBCCEDP has brought screening to underserved communities in collaboration with nonprofits and faith-based groups including The Best Chance Network and Catawba Indian Nation. In Nevada, programs with Women’s Health Connection increased screening numbers by 30%. Connect with your state’s screening programs. Share info about local screening programs and events. 

Encourage HPV vaccination

Encourage clinical trial participation

A lack of racial and ethnic diversity in both cancer research and the healthcare workforce is one of the major factors contributing to cancer health disparities, according to the American Association of Cancer Research. Clinical trials lead to the development of new interventions and new drugs. They are used to make better clinical decisions, but there is often a significant underrepresentation in clinical trials by non-White races and ethnicities. With a focus on targeted therapies and precision medicine, representation in clinical trials is increasingly important so that research includes and reflects all groups. Where to start? Share links to www.clinicaltrials.gov – where clinical trials are listed and searchable by location, disease, medicine, etc. 

During this year’s Black History Month, let’s work together to change the history of cervical cancer.

The Power of Setting Boundaries

This past Fall I was a keynote speaker for the Cervical Cancer Summit and spoke about the development of my three word “Why” statement. Why I keep fighting each day, educating and advocating about cervical cancer so that no other woman has to go through what I am going through. Why I speak up, research, question and give it my all. For me, my why statement is “Know Your Existence.”

I want women – and mothers especially – to know that their health and their checkups are equally as important  as their families’. I want minority women, especially in the Asian culture where  below-the-belt subjects are rarely discussed, to know how important their annual women’s health checkups are. I want women to Know Their Existence matters.

For me, part of Know Your Existence also means know what you need, physically and spiritually.  During my talk, I spoke about boundaries and how important it is to set boundaries with friends and loved ones during your cancer journey. Wherever you are in your cancer journey – initial diagnosis, surgery, chemo, radiation, etc. –  boundaries are extremely important. I did not set up boundaries the first time I was diagnosed and, as a result, I often cared too much about how others around me were feeling and dealing with MY diagnosis.

With my recurrence, it was a whole new ball game. For my own health and my own sanity, I put boundaries in place. It was no longer about how others were dealing with what I was going through. It was no longer making sure everybody else was okay. It was no longer about getting together with friends because I would feel bad or felt obligated. It was now about me and what my soul needed.

Everyone has good intentions. They want to be supportive and helpful, but it’s up to you to let your support system know exactly what you need from them.

Becky with members of her “squad” of support.

I do want to stress the importance of a solid support system. But, it’s important to really be in control of who is in your squad. Overall, I have been extremely blessed to have an amazing support system. They listen to what my needs are. They respect me when it takes me days to respond to a text or call because I am not always in the mood to talk. At the end of the day, they know what boundaries I have set in place and they honor them.

Unfortunately, we all have some people in our lives that I like to call “energy vampires.” These are the folks that, though they may mean well, leave you emotionally drained after a conversation because they have literally sucked out the little energy that you do have. When dealing with the trauma and hell that cancer brings into your life, there is no better time to draw some strict boundaries around these folks and the access they have to you.

Unfortunately, I’ve come to learn that some people are just drawn to other people’s suffering and pain and only “show up” because at the end of the day, it really is about them and not you. These are people who might show up for a visit, but at the end of the day leave you feeling like the visit was only to make themselves feel better rather than to make you feel better.

I learned this first-hand when I had a few people who wanted to be there for me only on my chemo days. Almost like they wanted some sort of credit for showing up and sitting with me. Sorry folks, this isn’t school and you don’t get credit for just “showing up.” It is wonderful to have your solid support come visit and sit during those long chemo days, but make sure the people visiting are there for the right reason: YOU. If you want to take a nap while someone is visiting, take a nap. Don’t feel the need to entertain someone. Boundaries people, boundaries. There is no better advocate for yourself than yourself, remember that.

At the end of the day, I just want everyone, not just those who are going through trauma to truly understand how important boundaries are in our lives. I want people to know that it is okay to set boundaries for yourself and to not feel guilty about it. Know that you matter. Know that your voice matters. Know Your Existence.

Becky was originally diagnosed with cervical cancer in 2018, at age 35, and quickly became an active member of the Cervivor community, joining Facebook Group discussions, attending Meet Ups, participating in the September 2019 Cervivor School and becoming a Cervivor Ambassador. Read her Cervivor story and learn how she brings her passion and Cervivor Spark to help stop cervical cancer.

What Do Black History Month and World Cancer Day (Feb. 4) Have In Common?

Advancements in the understanding and treatment of cervical cancer are inextricably intertwined with Black History Month. Why? Because the “HeLa cells” used in the scientific research that generated the HPV vaccines were from the cells of Henrietta Lacks, a Black woman who lost her life to cervical cancer in 1951, at age 31.

Physicians at Johns Hopkins University, where Lacks was treated, cultured cells from her tumors for medical research (notably, without her or her family’s knowledge or consent). Her cells survived, thrived, and multiplied outside her body, so much so that they have been in continual use in labs around the world. HeLa cells have helped change the course of modern medicine, contributing to medical breakthroughs including the development of the polio vaccine, and treatments for cancer, HIV/AIDS, leukemia, and Parkinson’s disease. HeLa cells were also of course instrumental to the development of the HPV vaccines.

Today in America, Blacks face the highest death rate and lowest survival rate of any racial or ethnic group for most cancers. This is certainly true for cervical cancer. Although in the U.S. cervical cancer occurs most often in Hispanic women, Black women tend to have lower 5-year survival rates and die from the disease more often than any other race.  In fact, they have twice the cervical cancer mortality rate compared to white women, according to the American Cancer Society. Henrietta Lacks, through her children and grandchildren, is continuing to have impact and address disparities. 

The Henrietta Lacks Enhancing Cancer Research Act

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Federal legislation focused on closing health gaps and improving access to clinical trials for people of color was signed into law in January 2021: the “Henrietta Lacks Enhancing Cancer Research Act” now mandates the government to reduce barriers to enrollment for underrepresented populations in federally-funded cancer clinical trials.

“While cancer impacts everyone, it does not affect everyone equally,” says Lisa Lacasse, president of the American Cancer Society Cancer Action Network. “The Henrietta Lacks Enhancing Cancer Research Act is critical to changing this reality, improving cancer outcomes and reducing health disparities in this country.” The newly enacted law builds upon Henrietta Lacks’ legacy by ensuring equitable access to advancements in cancer treatment for all people.

Learn More About Henrietta Lacks on World Cancer Day (Feb. 4)

In recognition of Black History Month (February) and World Cancer Day (Feb. 4) is a special virtual event: Henrietta Lacks’ great-granddaughter Veronica Robinson will host a conversation with the American Cancer Society Cancer Action Network’s VP of Federal Advocacy & Strategic Alliances, Keysha Brooks-Coley to discuss the new legislation, its importance and its intended impact on addressing some of the cancer disparities in our country. The event will be held Thursday, Feb. 4 at 1:00 PM ET on Zoom and Facebook Live.  Learn more and register.

What You Need To Know About Cervical Cancer Prevention

January is Cervical Cancer Awareness Month. We at Cervivor, a global group of cervical cancer survivors committed to ending cervical cancer, want  you to be aware of this: cervical cancer is completely preventable through vaccination and screening. This January, get familiar with these 5 things to know about cervical cancer prevention.

Know What Causes Cervical Cancer: HPV

  1. Nearly all cervical cancer is caused by the human papillomavirus (HPV), the most common sexually transmitted infection. Nearly 80 million Americans have HPV at any given time, and about 14 million become newly infected every year. In fact, most sexually active people contract HPV at some point in their lives. The virus spreads easily through skin-to-skin sexual contact; sex doesn’t have to occur for the infection to spread. Most types of HPV don’t post a health risk and don’t cause symptoms, so many people don’t ever know they have it. The good news is: more than 90 percent of all new HPV infections go away on their own, fought off by the body’s immune system. Yet for some women, HPV stay in the body, is not cleared by the immune system, and can lead to cell changes that result in cervical cancer.   

Get the HPV Vaccine for Yourself and/or Your Kids

  1. HPV vaccines have been available in the United States since 2006. These vaccines protect against infection with the HPV types most commonly linked to cancer, as well as some types that can cause genital warts. The vaccine prevents HPV infection – and, as a result, prevents cervical cancer as well as prevents against other cancers related to HPV such as penile cancer, anal cancer, vulvar and vaginal cancer. 
  1. The Centers for Disease Control recommends the HPV vaccine for girls and boys ages 11 to 12. At this age, the vaccine is administered in two doses spaced six to 12 months apart. Since this isn’t a school-mandated vaccine, parents need to be proactive and ask their pediatricians and family practice physicians for it.
  1. Older teens and adults also can receive the HPV vaccine. Immune response to the HPV vaccine in adults and older teens is different than in children, so recommendations are for a series of three doses, rather than two. 

Keep Up with Pap & HPV Testing to Catch Any Early Pre-Cancers

  1. Cervical cancer progresses slowly, so don’t skip your pap test! Keeping up with your “well woman” health visits is a proven way to prevent cervical cancer. Certain “high risk” types of HPV cause the cells to progress from a pre-cancer stage to invasive cancer, but that progression can be slow so there is ample opportunity to capture cancer through screening before it develops. Be vigilant about seeing your gynecologist or family physician for Pap testing (which looks for abnormalities caused by HPV) and HPV testing (which looks for the presence of the high-risk strains on HPV). 

The American Cancer Society reports that about 13,800 new cases of invasive cervical cancer are diagnosed each year in the U.S., and about 4,290 women will die from this disease. Worldwide those numbers are as high as 570,000 newly diagnosed and more than 300,000 die annually.

We at Cervivor, survivors of cervical cancer who are living with its aftermath, work to ensure that others do not suffer or die from this very preventable cancer. Screen. Vaccinate. Prevent cervical cancer. Spread the word.

What Our Medical Teams Told Us

We asked our I’m A Cervivor! community, “What was the best advice your doctor or medical team gave you?” Our community didn’t disappoint and they provided some fantastic responses. We’re thrilled to be sharing them here for Medical Team Monday.

I think the best advice I got was just to be prepared for the fact that once I went back to work, a lot of people were going to assume that I was fine and could work at full speed. That prepared me to be ready to set some boundaries. It turned out to be really true. Honestly, I even felt the betrayal by certain women that I thought for sure would understand that this had been a big deal physically. ~ Laurie

Best advice from my OB was to take the misoprostol orally not vaginally. Tastes AWFUL but she was right, it works better. Also, she told me she was happy I lost the crappy husband. “You deserve someone who will be there for you not when you need him to but for all the times when you don’t need him to.” ~ Sarah

“Learn as much as you can about your illness” – he pretty much empowered me to take charge. ~ Maria

“Rachel, drink the damn scotch.” ~ Rachel

We’ve all been through so much and we desperately want our doctors and medical teams to hear us. That includes listening to our concerns, helping us navigate through all the unknowns (we are not the experts), and ultimately be that credible resource. Communication is so important to everyone involved and it starts by meeting us where we’re at, building and leading with empathy and compassion, which in turn is improving our quality of life overall.

“Breathe, smile, do not give up on yourself.” “You are stronger than you think!” “Don’t be afraid to ask us anything.” haha I’ve made them wish they never said that last part. We’re like family now lol. ~ Re’gina

You got this. Just breathe and let’s move forward. I’ll give you meds when you feel it’s too much. (I love him for that!) ~ Karla

Our medical teams are our heroes, and, in a way, we can be theirs as well. By telling our stories, both medical and survivor, we can shape the narrative of how cancer is treated. It’s not just cancer, there is a person attached to that diagnosis. Together we can create a powerful partnership and make a difference.

A Decade of Advocacy

It is surreal for me to think that I have been an advocate and sharing my story of cervical cancer for ten years.  I say this because after treatment, I just wanted to stay quiet.  Not talk about the whole ordeal and just move forward.

I am sure many survivors feel this way after treatment, but I have also met many that are very vocal about every single step of their journey.  I was not one of them.  I do not have any documentation about my journey.  The only thing I have are 35 hospital bracelets for each time I had a radiation treatment.  

It wasn’t until four months after treatment that my brother insisted on doing a cervical cancer walk. A coincidence? Perhaps. I will never know.  At first, I did not want to do it, but he insisted so much that I gave in. 

Walk to Beat the Clock – NYC

On September 19, 2009, at the Walk to Beat the Clock, I met Tamika Felder, a cervical cancer survivor and the founder of Tamika and Friends, which later rebranded to Cervivor.  That day I met other survivors as well.  They were sharing their cervical cancer stories.  These stories were similar to mine and told with such heart, passion and confidence.

First time meeting Tamika

I was in awe.  I was inspired and motivated but most importantly I did not feel alone anymore.  At that moment, I made a decision that I wanted to join the cause and the movement. I wanted to share my own story and let other women know that my journey did not have to be theirs and that they were not alone. 

My mission became even clearer when Tamika invited me to a Latino Summit in Washington D.C. It was there that I learned the statistics between cervical cancer and Latinas. 

To be able to share my own story I needed to be authentic, open and be able to deliver it with an open heart.  Tamika said to me at the very beginning “always tell your story from your heart, because when it comes from the heart people listen.” I have applied this statement to the hundreds of times I have told my story and I still do.  

First radio interview

I still remember the first time I told my story. It was March 28, 2010 and it was a radio interview in Spanish for 95.9 FM El Poder Latino (The Latino Power).  I was so nervous, my heart was pounding, but I remembered what Tamika had told me to do and I spoke from the heart.

On January 25, 2014, I attended the first Cervivor School, which took place in New York City.  Cervivor School is a life-changing event. It is empowering, informational, educational and inspirational.  We also get to share our views, our stories, our concerns, our goals, our obstacles and our strengths.  It is so important that survivors who become advocates are educated and informed with the latest facts to be able to bring the proper message forward. 

It has been a journey of highs and lows.  The reality of things is that not everyone is going to be interested in listening to your story or anything you have to say and this had to be OK with me. I did not let this discourage me.  As advocates, we set to save the world. Unfortunately, I came to the realization that I cannot save the world, I cannot even save New York City, where I reside, but if my message gets to one person in the crowd, I have completed my mission. 

Through the years, there have been many ways I have advocated: free cervical cancer screening events, health fairs and interviews with different media outlets. Not every presentation or interview has been perfect, but I can honestly say that I never did it for the accolades.  I do it to educate women that need to know that this cancer is preventable and treatable if found early.  We lose over 4000 women every year in the United States alone. These women were someone’s wife, aunt, daughter, mother, grandmother and their lives matter.

I am very proud of the work I do as an advocate and I am humbled to say that my advocacy work has been recognized.  

New York City Proclamation

All the work has been important to me, but I hold two events dear to my heart. The first is the proclamation for my advocacy, given to me by the New York City Council on January 10, 2015. This was one of the proudest moments of my advocacy world. 

Lasker Awards with Dr. Lowy

The other was being invited to the Lasker Awards  in 2017 where I met Dr. Douglas R. Lowy and Dr. John T. Schiller, the two scientists that were the recipients of that year’s  award for their technological advances enabling the development of the human papillomavirus (HPV) vaccine which prevents cervical cancer and other tumors.  So proud that my story was featured in their submitted video. 

My advocacy journey has brought me full circle.  Today I lead a survivor fitness group as the Cervivor Wellness Instructor.  Survivor Slimdown is a Facebook group open to ALL CANCER SURVIVORS.  It is a space for inspiration, motivation and accountability as we learn to navigate our way to health after a cancer diagnosis.

I must say that the best part of my advocacy has been meeting my wonderful and inspirational Cervivor sisters.  Every single one of them has a story that matters.  Stories that show resilience, courage and strength.  Unfortunately, many of them are no longer here, but we keep them in our hearts.  We honor them by continuing to share their stories and legacies because they did make a difference. 

We all bond with the same mission to end cervical cancer and to make our generation the last one to fight this disease.

Advocacy in action!

My heartfelt thanks to Tamika Felder and the Cervivor organization for giving me a voice and a platform to share my story. This organization has supported me on my way back.  They have also supported so many other women fighting and surviving this disease. I will never feel alone again.

Patti is a Cervivor Ambassador and Cervivor’s Wellness Instructor who manages our Survivor Slimdown Facebook group. She is a retired NYPD police officer and an 11 year cervical cancer survivor. She resides in NYC with her husband of 21 years where she’s a Group Fitness Instructor and a Health Advocate.

Surviving Cervical Cancer: Tips from Our Community

We develop tools to navigate through life’s rough waters but when you’re on the receiving end of a cervical cancer diagnosis, it’s like your toolbox is suddenly empty.

Something that almost everyone in our Cervivor community has said is that no one ever wants to be in a ‘cancer club’ but when you do find your community, things feel less scary. Now you can share coping and wellness tools, help others and find support from those who ‘get it’.

To provide that support, our community is sharing their tips for coping through a cancer diagnosis.

Keep a box of cards/letters/hospital bracelets/etc. This can be a vital way of processing through your emotions every now and again. You can reflect on the support you received and everything you survived. ~ Morgan N.

During treatment, sleep when you’re tired and eat when you’re hungry. Keeping your body well rested and nourished is a priority. ~Emily H.

I had to learn to say, “NO!” and to take time for myself to rest. Morning and evening meditation really helped me and art is my escape from it all. ~ Tasha B.

Yoga and meditation and eating clean! Meditation helped me focus on one thing. Eating clean gives me advantage on fighting back with nutrient vitamins to restore and help my body and digestive system. ~ Re’gina P.

I schedule time to rest. Be it meditation, reading, sitting in the sun, even aimlessly scrolling – just to be still for 30 mins or 1 hour during the day. I say I’m busy. Busy resting. ~ Samantha R.

Not only are our bodies going through so much with side effects, treatments and surgeries but cancer takes a toll on our spirit and mental health. Taking time to rest and reset, however that looks to you, is so important. Maybe this means reaching out and asking for help. Maybe it’s calling that friend who always knows how to make you laugh, or maybe it’s lying in bed and just crying. Creating space for ourselves is healing. Self-care comes in many forms and none of it is selfish.

Getting outside, even if it was just to walk to the mail box or sitting in my backyard. A little vitamin D always makes me feel better. ~ Carol L.

For me, it’s always been; yoga, meditation, walking/hiking, a religious sleep schedule, cooking/baking, time with friends, music, and quiet time reading. ~ Tracy C.

Listen to your body and resting whenever needed. This was very hard for me because I was so used to go, go, go but it’s so important to let your body rest and repair. ~ Gracie C.

There was overwhelming gratitude from survivors for their medical providers. From amazing Gynocological Oncology teams, Infusion and Radiation teams, to PA’s, RN’s and everyone who works hard to keep us alive to live. When you have a good oncology team, it’s a game changer.

Eating healthy food and sessions with my Oncology Physical Therapist to help with hip pain, regular varied movement, and journaling. ~ Christina B.

Finding my ‘safe spot’ to mentally escape for a bit. Learning to let others take care of me. Coloring and enjoying nature. I’m very tactical and the ears on my dog help soothe me.  ~ Karen N.

I learned to create boundaries from negative things/people. Using no, for my own wellbeing is essential. ~ Lorie W.

Another common thread we heard from you was the support you received from family and friends. Being surrounded and supported by people who put care into action means so much. Whether this comes in the form of prayer circles, meals being delivered or being that person holding our hand, all are great acts of loving kindness. And who doesn’t need more of that?

As cervical cancer patients, survivors and thrivers we have a special community. One that feels tight-knit because we know that through our voices we have the power to ignite a conversation and to help others. We know that our stories can have an impact on someone else’s life. That, through those stories, ending cervical cancer can be reached.

What are some tips you used to get through your diagnosis or life-changing event? How does wellness play a part in survival today?

Breathe in Self-love, Exhale Gratitude

These words will be in the forefront of my mind as I continue through Cervical Cancer Awareness Month.  We welcomed Deb Jennings of Sounds for the Soul to lead us in our first Self-Care Sunday session. It was a self-guided meditation with singing bowls, flutes, and chimes. I’ve had some experience with meditation and used to practice it quite frequently. However, like most things in 2020, I fell out of habit.

Starting the session, I was eager, slightly nervous, yet super excited. I haven’t hosted many virtual events in my lifetime. I wasn’t sure how I was going to be able to relax but I would quickly be proven wrong. In fact, I was not expecting my body to react the way it did in today’s session. 

Deb started in with her singing bowl and what felt like a gentle nudge into a guided meditation. A few minutes passed by as we were breathing in a self-love affirmation and breathing out another affirmation of gratitude.There were several pitches and frequencies starting to awaken my heart and my mind. My body was resting. I was overcome by a chill as we welcomed in the helping energy of our higher selves. It was then I heard the sound of a flute and a beautiful song voice. The mantra stated, “I release control and surrender to the flow of love that will heal me.” It was exactly what I needed in that moment. I felt the tears welling up, pooling, then releasing a stream ever so gently down my face. Relief, probably the first I have felt that in many months and I’m not the only one.

Re’gina, a cervical cancer survivor located in Wisconsin shares, “This session also allowed me to remember a place I loved as a child, fond memory of San Bernardino mountains, Lyttle creek, pine trees, river rocks and mountain water… ahh. I’ll be keeping this memory alive for future meditation and happy placeness.”

Lorie, another cervical cancer survivor located in Michigan shares, “Her soothing voice, emotive language, and sound bowls brought me to a place of peace, so much so that I liked her page immediately when the session ended. The moderator and guide made my morning more peaceful.”

As you can see, spiritual things are felt and experienced when we give ourselves permission to receive those messages. Some trigger a release of emotions we didn’t know were even there. We cannot ignore the incredible messages embedded into Deb’s guided meditation, the ones that resonated with our community were anywhere from self-love and gratitude to forgiveness and healing and last but not least, leaning into our community for support.

Sunday evening proved to be yet another important lesson in self-care, love, and gratitude for many who attended. Cervical cancer survivor and yoga/meditation teacher, Tara Casagrande, led a candlelight foot scrub and meditation.  It was the perfect way to round out a self-care Sunday.

Tara’s words were effective.  She explained the root chakra and its connection to the area where the cervix is located.  Tara emphasized how this small act of self-compassion could have a lasting impact.  She taught us how to appreciate the relationship between one’s self and their feet.  It was imperative to understand just how much work they’ve been through in the past year.  This was a moment to give appreciation and gratitude for them. 

Tamika, Cervivor founder and 19-year survivor, described the sensory experience from the texture of the scrub, to the warmth and the wetness of the water, and then catching the sweet, familiar scent of vanilla. She is adding the mantra of the evening into her daily affirmations: “I feel safe.  I’m at home in my body.”

Tasha, a cervical cancer survivor in Florida, stated how before the COVID pandemic hit, it was a regular thing for her and her daughter to go have spa days.  She has made a goal to practice the self-care routine once a week with her daughter using the recipe provided.  She also enjoyed playing some smooth jazz while unwinding during the event.  In her own words, “I love it!”

Emily, a cervical cancer survivor in Iowa says, “I didn’t have the ingredients for this scrub tonight, but I went through the motions anyways and it felt like a foot massage. Connecting with my feet and my toes, it felt good. A few weeks from now when I’m with my parents, I can see my mom and I sitting on the edge of the bathtub and doing this together as a little foot massage/girl time.”

Self-care is not selfish. In fact, without experiences like this to make us more self-aware, we often jeopardize our health and well-being while running ourselves ragged. Most of us that know how hard we can be on our own self.  We can be our own worst critics, but we need to allow some grace.  We see the incredible emotional support we receive every day within our community, and we want to encourage all of us to take it a step further. Let’s hold each other accountable in developing good habits including self-care.  

Stay tuned as we have more opportunities throughout the month of January with our Wellness Wednesdays and our virtual Pap Rally & Run. Join us and treat yourself to some self-care!

Morgan Newman is a metastatic cervical cancer survivor, a Cervivor Ambassador, the 2018 Cervivor Champion recipient, 2019 Iowa American Cancer Society Action Network advocate and the 2020 Advocate of the Year by Above & Beyond Cancer.

“On Wednesdays we wear Pink”… wait, what?

That is something my son Matthew always said to me, and I always laughed.  I had no idea that line came from the movie Mean Girls, nor how much I would remember this comment and how it evolved and shaped my Teal & White Tuesdays.  

I knew pink was the color for breast cancer as I had already been down that path.  I had no idea what the ribbon color was for cervical cancer. When I received my diagnosis in 2015, I had to research the ribbon to find out what my color of ribbon would be. Deep down somewhere in my subconscious, I knew I would be wearing that color for the rest of my life.  

After my lengthy treatment battles, I found Cervivor. This became my “go to” group for information, help and support.  I loved it when they said to wear teal & white on Tuesdays.  An idea began to form.  

I attended Cervivor School in 2019 with much help and support from my friends and family.  I honestly don’t remember Tamika’s exact question that day at Cervivor School, but I immediately remember my response, “On Tuesdays, we wear Teal and White.” Thanks Matthew, for the quote from so many years ago!! The idea continues…

I have bought my son several ties and dress shirts in the teal and white theme that he proudly wears to work. I make an effort to post something on my social media accounts about #TealAndWhiteTuesday every week to remind people about cervical cancer, to get your cancer screenings, to get your vaccinations, and to promote awareness. The idea is growing.

In January of 2020 during CCAM, I was invited to Matthew’s place of employment, Hy-Vee. They did a promotion during that year to promote cervical cancer awareness. I had so many more plans for public awareness campaigns, but 2020 had other plans for meeting people.

I was forced to refocus my efforts, and the idea began to fully bloom.  Pandemic boredom = creative, crafting mind flow.  I started off with buying printable iron on sheets and made one shirt.  I wanted more.  I created a better graphic design and had made several more shirts.  I handed out twelve shirts to people, and five of them went to high school age girls. We discussed cervical cancer and the need to take care of yourself, even at a young age.

I made and sold teal and white kitchen pot scrubbers, with proceeds going to Cervivor. I attend the Cervivor virtual holiday party and am now on the CCAM Planning Committee. I tell everyone I meet that health is a PRIORITY in life and do not ignore it! 

I post about cervical cancer and Cervivor so often now on social media to spread the word. I talk about it with my friends and family. I am not ashamed or too shy to share my story with others, no matter who they are.  I want people to know how this affected me, and how I am a stronger person now for the ordeal I survived.

The impact that Cervivor School had on me to advocate and talk about this has amazed even myself.  I was not even sure about going, and here I am a year later involved as I can be and loving every minute of it.    

I love #TealAndWhiteTuesday and dress in it every week, even if I am not leaving the house to go anywhere. I am forever grateful to my family and friends in supporting me to get the word out, and I love how involved they have become to spread the word as well.

Have you ever noticed how many people actually read the t-shirts people wear? Have you stopped yourself to read someone’s shirt as they walk by you? It offers an ice breaker without having to say a word.  

“On Tuesdays we wear Teal and White.” Spread the word.

Karen North lives in Liberty, Missouri. She is a retired registered nurse. Her world is her family, fur-babies, and friends. She is a six-year breast cancer survivor and a four-year cervical cancer survivor. 

Read Karen’s Cervivor story.

Read Karen’s blog post on being both a breast cancer survivor and cervical cancer Cervivor. 

Why January is Our Month

Within the Cervivor community we talk a lot about feeling like our cervical cancer doesn’t have the visibility that breast cancer has. But it takes a village, a global voice, to make even the smallest impact. And it does not happen overnight.

As Lead Cervivor Ambassador, I want to elevate the voices within our below-the-belt club. I want you to know how important your personal story fits into Cervivor’s mission to end cervical cancer. I have the pleasure to chair this years Cervical Cancer Awareness Month (CCAM) Planning Committee and I cannot be more proud of the work this team has done for this community. January gives us an entire month to educate about the importance of cervical cancer prevention and splash our social media channels teal & white!

Collectively, we are the catalyst needed for change and change takes every voice and everyone’s action. This month we are creating a platform for you to build upon; to get people talking about cervical cancer awareness and prevention. Our CCAM committee has gone above and beyond to make January 2021 the best ever!

There are so many amazing events I am excited for this month. We truly have something for everyone. Since 2020 gave me more time at home, I started incorporating more fitness into my daily life so the fact that we are hosting a virtual Pap Rally & Run has got me pumped up!

I’m always up for talking about the more intimate side of cervical cancer and how that effects us. Sexy Saturday discussions will be filled with all the stuff we love to talk about with those who completely ‘get it’.

Be sure to check out our January CCAM calendar and participate with us all month long. We need you and your Cervivor Spark! Engage in conversations on our Facebook, Instagram, Twitter and Pinterest and share Cervivor’s content throughout the month.

At Cervivor, our CCAM mission is clear, make January Cervivor’s month to shine and showcase how we will #EndCervicalCancer. I hope you join us and help us spread the word. Ending cervical cancer is within our reach — especially when we work together. 

Carol Lacey, Lead Cervivor Ambassador and 2020 Cervivor Champion. Read or watch Carol’s Cervivor Story.

Creating New Habits Instead of Resolutions

Did you make a New Year’s Resolution? I used to, but then I just got tired of just not sticking to it and giving it up all together after the first month.

We have to acknowledge that there are people out there that keep their resolutions throughout the year and are successful. However, statistics show that even though millions of Americans make resolutions, less than 8% actually stick to them.

Therefore, we are going to stick to small changes. Changes that are actually achievable while we are working on our consistency muscle. The more you are consistent and succeed, the greater confidence in your ability to do it again. It actually helps you grow the belief that you can do it.  

I am inviting you to join our first challenge of the 2021 on Survivor Slimdown. Survivor Slimdown is a Facebook group open to ALL CANCER SURVIVORS. It is a space for inspiration, motivation and accountability as we learn to navigate our way to health.  Also, join me for a virtual workout on Wednesday, January 6th. Register for free here: https://bit.ly/37GpDjr 

The January challenge consists of creating new habits. Over time, patterns form both in behavior and in the brain. This can make it difficult to break a habit or even to form new ones. Therefore, we will start easy and we will succeed. 

As a group, we will work on two habits for the month, but if you want to add a third one on your own please do – just remember to make it small, sustainable, specific and achievable. We will stick to these actions for the 31 days in January.  We will use the habit tracker and cross each day for accountability. Our mantra for the month is “NEVER MISS TWICE.”

Habit 1

Drink an 8oz. glass of water after waking up and before having any food and/or coffee.

Drinking water in the morning will help you kick-start your metabolism.  Staying hydrated helps your body start to burn calories faster, which is vital when you are trying to shed body fat. Even if you are not looking to lose any body fat, hydrating the body brings many health benefits. 

Habit 2

Move your body for 10 minutes a day.  If you get to do more than 10 minutes great, but the minimum is 10 minutes. (Walk, dance, ride your bike, stretch, etc.)  Stay true to yourself.  

Moving is the best medicine for the body and the mind. It strengthens your muscles, which improves stability, balance and coordination. Stretching maintains muscle health as well. Movements help build more durable and denser bones.

Habit 3

The third habit is your choice. It cannot be something that you already do in your daily routine. Some examples of the third habit can be:

  • Wake up an hour earlier than usual
  • Meditate for 5-10 minutes in the morning
  • Add a veggie to each meal you eat
  • Make your bed after you get up – if you are not doing this already
  • Go to bed at a specific time at night
  • Chew your food 22 times before swallowing
  • Journal on a daily basis for 31 days
  • Read 10 pages every day of the book you have been wanting to read
  • Write three things you are grateful for every day
  • Say a daily affirmation
  • Learn a new word every day

The above are examples of small habits but you can choose any habit that aligns to your master goal.

Remember, if you want to drink more than 8oz of water in the morning before food or coffee you can. If you want to move more than 10 minutes a day you can. The concept is for your habit to be achievable and not get too overwhelmed. When we feel overwhelmed, we tend to quit. Quitting is not an option.  

Let us start this year with a successful month by sticking to these small and achievable habits. We got this!

Patti is a Cervivor Ambassador and Cervivor’s Wellness Instructor who manages our Survivor Slimdown Facebook group. She is a retired NYPD police officer and an 11 year cervical cancer survivor. She resides in NYC with her husband of 21 years where she’s a Group Fitness Instructor and a Health Advocate.

My Security Blanket

Some cancer patients who undergo chemotherapy treatments opt to have a medi-port implanted. Sounds bionic right? Super powers you will not have but this is a pain-free way to receive systemic treatments and blood draws. 

I was holding on to Porsche, my PowerPort™ partly as a security blanket of sorts. I have recurrent, metastatic cervical cancer and for five years she was working pretty much non-stop. 

Port flush day

When you’re port isn’t in use, you have it flushed with saline every three months or so. Kind of inconvenient but I kept it up and each time Porsche grew increasingly defiant. I had to practically stand on my head to get her to give a blood return. Clearly, she was tired and I didn’t blame her.

I’ve been NEND (no evidence of new disease) for four years now so I thought it was time to let her go. I just didn’t think I’d be doing it during a pandemic when maybe being in a hospital wasn’t the first place you’d want to be.

Once I made peace with my COVID fear, what really hit me as I walked into the hospital was that I was doing this alone. No partner, no kids, no parents, no friends. I never had to go through any previous surgeries without this support. I always had a hand to hold and a familiar face to see. 

What made the experience better was the amazing pre-op team. It felt good to talk with the nurses about their work during COVID, and I was just so grateful to them. Their care has always been exceptional but it felt broader this time.

Surgery was a breeze, and my doctor even showed me Porsche so I could thank her one last time for all her hard work. One of my breast cancer besties said that some people are decorating their ports as keepsakes! 

I love that we all decide how to move through our traumas in our own way. Bedazzling ports, getting special tattoos, sharing our experiences on social media, or simply holding space for our hurt. Whatever speaks to you is the best way to heal.

Carol is our Lead Cervivor Ambassador who manages our Cervivor MeetUp program and heads our CCAM 2021 Committee. She was named our 2020 Cervivor Champion award recipient. Carol lives in Northern California where she raised two amazing kids and hikes with her husband and their fur baby Ace.

The Heart of a Caregiver

Dr. Nina Rickenbacker Edwards lost her daughter Teolita to cervical cancer in 2019. Teolita had been an active member of Cervivor and a proactive advocate about cervical cancer. “Whenever or wherever Teolita was given an opportunity to speak, she would use that time to raise awareness about cervical cancer,” Nina reports. In honor of her daughter’s mission to outreach and educate, Nina shares some lessons and perspectives on caregiving for Caregiver Awareness Month.

My daughter Teolita passed in August 2019 – just a few weeks shy of her 39th birthday. During Teolita’s cancer journey, I reflected on the many roles that Teolita said I had played in her life: teacher, preacher, doctor, chastiser but most all, mother and best friend. Later during Teolita’s journey, I had to officially add the role of caregiver and provide support and care for my independent, brave and strong adult daughter when her physical health was waning.

I learned that there are some key characteristics one must have  – or develop – to be a loving caregiver: a heart that is full of compassion, joy, peace, patience, kindness, goodness, and gentleness.

  • Compassion comes from within. You understand what someone else is going through. You strive to do all you can to connect with the person you are giving care. 
  • Joy comes from accepting the challenge of taking care of someone and knowing that you are providing them with all the care and support you can provide. You feel useful, needed, and even gain a sense of purpose.  
  • Peace can be found in caregiving, regardless of the circumstances you are confronted. When you know that you have done all that you can, even if negative situations arise you can find peace in knowing that you gave it your all. 
  • Patience is a requirement for successful caregiving.  Patients needs can change daily, so you must be able to adjust to change on short notices. 
  • Kindness, goodness, and gentleness are essential to meeting and managing the needs of those in are care.

It was painful as a mother to see my daughter suffer. It was hard to watch my daughter fight with all she had. Teolita had such drive, determination, resilience and passion. But even in my own pain, I learned that as a caregiver, when we care for others from the heart, we can adapt to the circumstances and conditions of the loved one under our care.  In doing this, I received a profound sense of purpose and satisfaction knowing that I had a direct impact on the quality of my daughter’s life.

The advice Teolita would share with so many women was “you are braver than you believe, stronger than you seem, smarter than you think, and twice as beautiful as you would ever imagine. Never give up, never give in. You had cancer; cancer didn’t have you.”

I think this advice applies to caregivers too. You are braver than you believe and stronger than you ever envisioned you could be. Be good to yourself so that you can give care with a full heart. As caregivers, we give so much of ourselves. Take a break and recharge.  You cannot possibly take care of another person if you are not physically and mentally healthy yourself.

To honor her daughter and continue Teolita’s mission of education and cervical cancer prevention, Nina and her community host an annual Teolita S. Rickenbacker Cervical Cancer Awareness Fundraiser Luncheon. See news coverage and TV clips of the January 2020 event.

Tell Me I Was A Good Mother, Tell Me I Did Everything I Could For Her

Colleen lost her daughter Caitlin to cervical cancer in May 2020. Caitlin was 32. Colleen was there on the day Caitlin received her Stage 4 diagnosis, and on the day she died just two years later. For Caregiver Awareness Month (November), Colleen shared some experiences and reflections with Cervivor:

I was with Caitlin April 13, 2018 – the day her doctors told her she had advanced cervical cancer.

I was familiar with the term “Stage 4.” I’m a surgical scrub nurse in the labor and delivery unit of our local hospital, so I know medical terminology. Maybe it was because of this that I could never fully wrap my  head around how she could possibly ever fully “beat” stage 4 cancer. So I prayed for time. I only got two years. She died on May 17, 2020.

I had hoped Caitlin would have more time to do some stuff before she died – to travel and experience the world. She kept on with different treatments. Chemo. Radiation. A clinical trial with an immunotherapy. They would work, a little bit. The tumors might shrink, but then come back. Or the treatment would work on the tumors in her cervix, but not on the cancer that had spread to the other parts of her body.  Still, she kept her spirits up. She kept fighting. She found a community of support in Cervivor. She did all that she could to share her story. She wanted to make sure that this didn’t need to happen to anyone else. She had so looked forward to attending the September 2019 Cervivor School in Chicago to hone her story sharing and outreach skills, but was ultimately too sick to attend.

As her mother, I just tried to accommodate her in any way I could. Whatever she wanted to do, I helped her do it. She surrounded herself with family and friends. She cherished her time with her nieces and her friends’ young children and took so much joy in them. Her best friends came from near and far and took turns living with her. Her brother came home from the military and stayed with her. She surrounded herself with love. Her friends made sure she was not alone. They did fundraisers to help with her medical costs. They organized meal drops. They strived to have “regular” Friday nights with pizza and beer, hanging out in her living room so that she didn’t have to give up her social life even when cancer was taking its toll. That made such an impression on me. I was proud that my daughter – always a fun and popular girl who loved going to concerts and music festivals – had such strong friendships and supportive friends.

I took the role of taking care of the caretakers. I cooked for everyone. I straightened up. That is the story of my life. I’m a mother and a nurse. But I wish I had stopped running around and just sat down to “be” with Caitlin. I wish I had just slowed down and spent time with her rather than always being so focused on “taking care” of her.

Yet at the same time, I’m always wondering, did I do enough for her?

Please tell me I did everything I could for her.

Please tell me I was a good mother.

I took family medical leave from work when Caitlin finally entered the care of hospice. I didn’t realize that two weeks after she started hospice, she would be gone.

Caitlin left me a gift that I am forever grateful for. Mother’s Day was a few days before she passed away. She gave me a beautiful Mother’s Day card that told me exactly what I needed to hear – that she loved me and loved her family. That card assured me that she knew she was loved and well cared for. I pray on those sentiments. I carry them with me.

I think what Caitlin would want to tell all women undergoing cervical cancer treatment, all women in general and, really, all people is this:

  • Listen to your body. Advocate for yourself.
  • None of the bullsh*t matters.
  • Cherish your time with your friends and your family.
  • Let go of FOMO (fear of missing out). If you are with your family and friends, there is nothing more important that you are missing.

I keep Caitlin alive in my mind every day. I talk to Caitlin’s friends about what is going on in their lives, and I find comfort in that. We are all friends on Facebook, and when a Facebook “memory” with Caitlin pops up for them, they share that with me.  They share photos of Caitlin at concerts, festivals, weddings and celebrations.  They share those photo memories of my beautiful daughter out enjoying the world with them. Her life was short. But she did amazing things and surrounded herself with amazing people. 

Have you kept up with our blogs? (If not, here are some highlights!)

Our Cervivor blog has been full of insights, energy, empathy and advice. If your brain is fried from too many Zoom meetings and screen time, we’ll whet your appetite and fill you in on what you may have missed:

I’m Done With Treatment, But Treatment Isn’t Done With Me

 “Treatment was the longest, weirdest dream I’ve ever had,” shared Tash, in her September blog post. When her family accompanied her to the hospital to celebrate her final round of radiation, she thought she was “finally done” and ready to move on forever. “How naive I was to think that! I’ve learned over the past months that even though I’m done with treatment, treatment is not done with me. I’ve dealt with a plethora of side effects: I had what felt like a never-ending UTI. My bowels are a mess. My joints ache.” Read how Tash has come to terms with the long-lasting effects of treatment and discovered a newfound appreciation for her body – aches, pains and all. 

A Colostomate in Honduras during COVID-19

 “On a regular basis it takes three weeks for me to get my ostomy supplies to my home in Honduras. When COVID-19 made its way to us, Honduras was not ready for anything that came after March. Customs took months in letting them through,” reported Karla, a cervical and thyroid cancer survivor and an ostomate who shares her story openly and educates regularly in her country.  Read her blog about the headache of tracking down ostomy supplies during the COVID quarantine. (Also posted in Spanish)

Keep Up the Conversation About Vaccines, Even Amid the COVID-19 Pandemic

 Why is it especially important now to keep up the conversation about HPV vaccination? Because so many routine healthcare visits have been cancelled or postponed, bringing a new level of complications to keeping up with recommended vaccines for individuals, families and clinicians alike. A recent New York Times article reported a  73 percent drop in HPV vaccinations, according to a pre- and post-COVID-19 comparison of electronic health records. Read what we can do to remind parents to not forget about getting their teens/tweens the HPV vaccine and all of the protections it offers.

I had statistics in my talks, but that wasn’t telling the story that moves people to action

Dr. Noel Brewer, Chair of the National HPV Vaccination Roundtable, shares why he starts many of his sessions and lectures with Cervivor Story videos. “You are a moral voice on cervical cancer and all of the ways it affects lives. I don’t know anyone who can speak as powerfully.” Read more from Dr. Brewer as he reflects on how personal stories help people grasp the importance of preventing cancer more than scientific data that “doesn’t always connect with people’s feelings and imagination.” 

New Cervical Cancer Screening Guidelines: the Good, the Not-So-Good & the Need to Educate

Amid the craziness of the pandemic, the American Cancer Society updated its cervical cancer screening guidelines…and there are significant updates that we as survivors, advocates and educators should be aware of. Read Cervivor’s take on the ACS’ changing screening recommendation and our call to action. 

Losing Your Uterus, Losing Your Mind: Scientific Validation for Memory Loss After Cancer

When Samantha R. stumbled across a study suggesting that hysterectomies may cause memory problems, she clicked, read, and shared on our I’m A Cervivor Facebook group, kickstarting a dynamic discussion. Samantha shares her experience, her relief in finding the article, and the community of support that her post generated:

“Chemo brain gets a lot of discussion and attention, but not the topic of woman who had a hysterectomy or who have early onset menopause and who have similar fogginess. I actually did not have a hysterectomy but rather chemo-rad-brachy (stage 2b), which was oh so fun.  As radiation and chemo essentially killed my uterus and ovaries, this study about hysterectomies and memory loss caught my eye and resonated.

A wildlife ecologist, Samantha was diagnosed with cervical cancer at age 36 while in the midst of her postdoctoral research. The stress of the diagnosis and treatment on top of research and academics were brutal.

“After cancer, I couldn’t handle stress like I used to. I used to be able to do the cramming and the crunch time. But after treatment, I had really bad ‘chemo brain’ for at least a year until it finally started getting better. I still don’t feel as sharp as I was before, even though it’s been eight years since my diagnosis. As an academic with a master’s degree and a PhD, this had been really hard for me because my work, at the end of the day, depended on my brain. And of course brain fog doesn’t just impact work, but so many parts of life. My recall is slower. My short-term memory is slower. Things take me longer. It’s been hard for me to accept that my brain now functions differently. I used to be quick and make witty remarks. Now three days later, I come up with a response!”

Samantha was poking around online when she stumbled upon the article, New research suggests hysterectomies may cause memory problems.

“It’s about a first of its kind study conducted in rats (not humans), but the implications that our uterus plays a role in memory is just really interesting. I found it worth sharing because having an explanation gives women like us validation for having memory loss. It is nice to have some scientific acknowledgement of what we are going through.”

Newly published research has challenged a long-standing belief in the medical community that uteruses serve no purpose in the body except pregnancy. When researchers at Arizona State University performed hysterectomies on rats, the animals’ memory suffered.

Samantha’s Solutions: Coping Skills and Lessons Learned

Samantha now works for the federal government to protect and rebuild habitats for sea birds and sea ducks, specializing in restoration after oil spills. She shares some of the memory loss coping skills that she employs:

  1. Become a note taker: I take a lot of notes. I use a bullet journal. I now have a huge collection of hundreds of notebooks I’ve filled and it keeps growing, but it’s working for me.
  2. Keep a “done” list: Every day I write down not just to do lists, but “done” lists – so I remember that I did something. I capture calls I made, e-mails I sent, discussions and conversations I had.  My “done” list is my biggest coping strategy. My short term memory was really impacted from my chemo and the early menopause that resulted, so my journals and my “done” list are my recall mechanism. 
  3. Be proactive when it comes to therapy: My therapist has been amazing in coaching me to not beat myself up and to move forward and to be okay with not being okay. I had a hard time being weak – not just physically, but mentally weak. I’m a huge advocate of starting therapy early, when starting treatment, to get ahead of the roller coaster ride. I’d fallen into a severe depression after treatment was over, and I wish I’d started therapy earlier. 
  4. Don’t be afraid of medication: Medication has helped me battle my depression and panic attacks. My body doesn’t create estrogen and progesterone anymore. That makes a person crazy! It is not in your head! 
  5. Find your escape: I read a lot to escape. I’ve started meditating. I also started art therapy and do woodworking and jewelry making. I recently learned how to weld. I’ll never forget when I was in treatment and a social worker was trying to talk to me about art therapy and painting. I was like ‘screw you, I’m dying here.’ But now, years later, art has been my coping mechanism. It has become my sanity. (But I will never tell someone that during treatment! Only after!)

Eight year cancer survivor Samantha is a wildlife ecologist in San Diego, CA. When she is not protecting sea birds and restoring habitat for sea ducks injured by coastal oil spills, she volunteers with Burning Man and has attended the art festival 5 times. Learn more about Samantha’s Cervivor Story here.

Happy Birthday in Heaven, Teolita

In My Heart Always to Stay

Loved and Remembered Every Day …

Happy Birthday in Heaven

Teolita Schenese Rickenbacker

September 19, 1980 – August 24, 2019

You left this world long before I had planned for you to go,

Our time to say goodbye came way to soon.  

After being diagnosed with Stage 4 Cervical Cancer,

Teolita welcomed life with open arms and met all challenges head on.

Teolita had such drive, resilience, passion and determination.Nothing could stop her when she set her mind on something.

Our time to say goodbye came way to soon.

Teolita was relentless in her effort to become knowledgeable about cervical cancer, not just for herself, but to help raise awareness about this type of cancer and the importance of women’s health screenings. She became an Ambassador with Cervivor, a nonprofit organization that brings cervical cancer survivors together and helps to spread awareness, education, support and more. Whenever or wherever Teolita was given an opportunity to speak, she would use that time to raise awareness about cervical cancer – considered a silent killer! 

In her speeches, Teolita would say, “What I want all women to know is make sure you listen to your body and seek medical attention if something isn’t right. You must be your own Advocate. Make sure you are following the guidelines regarding cervical cancer screening because it is preventable. Always follow-up with your doctor, if advised to do so. Do not let stigmas, lack of knowledge, or shame, prevent you from taking care of yourself.”

To all cancer survivors or those fighting to recover from a cancer diagnosis, she would tell them “you are braver than you believe, stronger than you seem, smarter than you think, and twice as beautiful as you would ever imagine. Never give up, never give in. You had cancer; cancer didn’t have you.”

As days and weeks passed, Teolita and I started feeling all alone. Then she reminded me of the words of encouragement that she got from my mother and her grandmother all through her life. We took everything to God in prayer. In my listening role, I heard Teolita say she needed God more at that time in her life, than ever before. She was able to find hope and encouragement, knowing that she did not have to deal with the challenges alone.  Through prayer, meditation, and support from family, church family, friends, and an amazing medical team, she found the strength to fight for life. 

During Teolita’s cancer journey, I reflected on the many roles that Teolita said I had in her life. She said I showed her many things that only best friends showed. I was her doctor, teacher, preacher, chastiser but most all, I was her mother and best friend. Later during Teolita’s journey, I had to add the role of caregiver. I had to support and care for my daughter who was independent, brave, strong and ready to meet the challenges before her, but her physical health was waning!  

Now, I have taken on two more roles. My new roles are to facilitate the completion of the book Teoltia started to write and to keep Teolita’s mission going. Her mission was to raise awareness about HPV and cervical cancer. She was committed to helping others by speaking, educating and advocating for HPV and cervical cancer!

Teolita orchestrated the life she loved and lived. Teolita did it well!

Love Always and Missing You,  
“Mommy” (Nina Rickenbacker Edwards)

If you would like to make a donation in memory of Teolita to help other Cervivors attend Cervivor School, please click here.

Una colostomizada en Honduras durante la pandemia de COVID-19

Honduras es un hermoso país tropical ubicado en el centro de Centroamérica. Honduras se jacta de hermosas playas, bosques, montañas y gente. Me encanta vivir en Honduras, simplemente ir a cualquier parte y poder ver las cadenas montañosas, y el cielo vale la pena.

A pesar de eso, un problema que muestran las estadísticas es que 991 mujeres son diagnosticadas con cáncer de cuello uterino cada año en Honduras, el cáncer de cuello uterino es la primera causa de muerte en las mujeres, después del cáncer de mama. Afortunadamente, en 2016, el gobierno hondureño aprobó la vacuna contra el VPH para niñas. Los centros médicos privados proporcionan la vacuna al resto de la población.

Cuando me diagnosticaron cáncer de cuello uterino, no sabía nada al respecto. Fui la primera persona que supe que tenía este tipo de cáncer. Después del tratamiento cervical desarrollé una fístula rectovaginal, una cosa más que no sabía que existía.

Para ayudarme a sanar o tener una mejor calidad de vida, mi siguiente tratamiento fue una colostomía temporal, otra primicia en mi vida. Realmente sabía poco sobre ostomías; conocí a una persona que se sometió a una y nunca habló de ello.

Una colostomía es una abertura en el intestino grueso que lleva un extremo del colon a través de una incisión a la pared abdominal. Eso fue lo primero que aprendí sobre la colostomía.

Mi médico fue de gran ayuda al brindarme material y apoyo, pero me sentí tan perdida. Me conecté a Internet para buscar información o cualquier persona en Honduras con una colostomía. No encontré a nadie con quien hablar de ello. Google y otros sitios web fueron mi lugar de consulta para obtener información y consejos.

Cuando llegó la cirugía y tuve que pedir mis bolsas de ostomía no tenía idea de lo que estaba haciendo. Llamé a los hospitales de mi país y dijeron que tenían un solo y eso es todo. Entonces pedí por Amazon y compré lo que pensé que podría ser útil y más fácil de aceptar para mí (estuve en negación de mi ostomía hasta el día después de mi cirugía cuando sentí el alivio).

Comprar insumos en Honduras no es fácil, de hecho, llamas a proveedores médicos y ellos no saben lo que les estás pidiendo. Solo encontré un proveedor que comprende las ostomías, pero no proporciona la marca específica que necesito. La marca que uso no está disponible en Honduras.

Soy muy inflexible con mis suministros de ostomía, quiero estar cómodo y sentirme seguro. Me tomó un año encontrar mi pareja perfecta entre mi estoma y mi bolsa de colostomía.

Compro en línea en los EE. UU. Y me lo envían a través de un servicio de mensajería. Regularmente me toma 3 semanas llevar mis suministros a mi casa. Siempre planifico con anticipación y tengo suficientes suministros para 2 meses en cualquier momento.

Durante la pandemia, Honduras no estaba preparada para nada que viniera después de marzo. Todo parecía ser un caos cuando nuestro país comenzó a cerrarse. Dicho esto, cuando llegó la cuarentena, acababa de recibir un envío de mis suministros y, a mediados de abril, pedí más.

Pedí mis suministros habituales, no estaba preocupado, me había abastecido. Luego llegó junio y solo tuve suministros para la primera semana. No hay noticias de mi pedido. Innumerables correos electrónicos, llamadas y todavía no había recibido nada. Pedí más, por si acaso, con la esperanza de que este nuevo pedido llegara antes. Llamé y pedí innumerables veces mis pedidos.

Primero, llegaron tarde a mi mensajero, luego la aduana tardó meses en dejarlos pasar. Odiaba escuchar esta respuesta repetidamente: “Su paquete está aquí en Honduras, está en la Aduana y aún no ha sido entregado”. Tuve suerte de que un proveedor médico aquí tuviera suministros, pero como no son lo que necesitaba, los revisé rápidamente. Mis bolsas de ostomía tardaron 4 meses en llegar y el pedido llegó incompleto. Todavía estoy esperando el próximo envío y la finalización del primero.

La ansiedad me golpeó con fuerza en junio y julio. Estaba tan enojado porque esto estaba sucediendo. Me desperté un día llorando, porque las bolsas que estaba usando me estaban provocando una reacción alérgica en la piel.

Ese mismo día, mientras estaba deprimido por todo el lugar y haciendo que todos se sintieran miserables, recordé que todavía estaba aquí. Aunque esto era horrible y exasperante, todavía estaba aquí. Decidí dejarme arrastrarme por un día, dejarlo salir, liberarme.Al día siguiente me di una ducha larga sin bolsa y me puse una nueva, aunque la erupción todavía estaba allí, iba a revisarla y esperar a que llegaran mis suministros. Tenía que ser positiva.

Cuando finalmente llegaron aquí, lloré de nuevo (culpé a la menopausia). Fue como abrir un regalo de cumpleaños.

Ser ostomizado en un país donde se considera un tabú y hay poca información y suministros es tremendamente difícil. Soy increíblemente afortunado de tener una buena relación con mis médicos y, cuando tengo problemas, puedo enviarles un mensaje de texto y me responderán rápidamente. Tener este apoyo es de gran ayuda. Pero a veces necesitas el apoyo de alguien que comprenda física y emocionalmente por lo que estás pasando.Me tomó poco más de un año encontrarme con hondureños con ostomías. El solo hecho de saber que hay personas con una ostomía y que usted no está solo es útil. No los he conocido personalmente, pero estar abierto a compartir su historia ayuda a otros a abrirse a compartir la suya. El uso de las redes sociales ayuda muchísimo.

Mi ostomía me llegó debido al tratamiento del cáncer de cuello uterino. He llamado a mi estoma Jeepers, porque se me acercó sigilosamente. Soy un ostomado orgulloso, he aprendido a aceptar mi ostomía y a hablar de ello abiertamente. No debe ser un tabú o algo que nadie no pueda discutir.

Karla Chavez vive en Honduras, es ingeniera civil y entusiasta de los amigurumi. Karla es sobreviviente de cáncer de cuello uterino y de tiroides por 3 años y es una orgullosa ostomizada. Karla se graduó de Cervivor School en el 2019 y desde entonces es Embajadora de Cervivor y un apoyo clave para nuestra creciente comunidad de Cervivor Español.

Keep Up the Conversation About Vaccines, Even Amid the COVID-19 Pandemic

Recently, the FDA approved the HPV vaccine Gardasil 9 for prevention of head and neck cancer. Like cervical, vulvar, vaginal, anal and penile cancer, cancers of the head and neck are also associated with particular strains of the HPV virus. 

The original version of the Gardasil vaccine was approved in 2006 for girls and women between the ages of 9 and 26 based on data from clinical trials showing that the vaccine, by preventing HPV infection, could also prevent precancerous cervical lesions. This was expanded to prevention of other forms of genital cancer. But such lesions don’t exist in head and neck cancer – such as cancer of the tonsils and throat – so it was not clear how to prove the vaccine’s efficacy. So although the link to HPV was understood, cancers of the head and neck had been left off the list, until FDA’s June 2020 approval based on “surrogate endpoints”…and the epidemiologic evidence from use of the vaccine over the past 15+ years. 

This expanded FDA approval doesn’t change recommendations regarding who and when should get the vaccine. Here in the U.S. it is already recommended for females and males ages 9 through 45 to prevent cervical, vulvar, vaginal, and anal cancer as well as genital warts. But, it does expand the conversations we can have about the importance of the HPV vaccine, the cancers it can prevent, and the lives it can save. And, perhaps it will help bolster people’s understanding of why boys should get the vaccine (as if there weren’t enough reason already!).

Even – and especially – amid the COVID-19 pandemic we should continue to educate people about the HPV vaccine and remind them to ask for it for their daughters and sons, and/or for themselves. Why? Because so many routine healthcare visits have been cancelled or postponed, bringing a new level of complications to keeping up with recommended vaccines for individuals, families and clinicians alike.

According to the National Foundation for Infectious Disease, the overall number of well-child office visits was down by about 50 percent amid the pandemic. Vaccine manufacturers reported a decline in vaccine orders, and doses distributed through the Vaccines For Children program dropped significantly.

A recent New York Times article reported an alarming 50 percent drop in measles, mumps, rubella vaccinations; a 42 percent drop in diphtheria and whooping cough vaccinations; and a 73 percent drop in HPV vaccinations, according to a pre- and post-COVID-19 comparison of electronic health records from 1,000 pediatric practices nationwide. We need to avoid future public health crisis by returning to vaccine schedules, as soon as we safely can.

Many physician practices are returning to non-emergency visits from patients and are putting new protocols in place to give vaccines while keeping both patients and practitioners protected from COVID-19 exposure. Some are even offering drive-up vaccine clinics so that children don’t need to come into the office to receive some vaccines, or at least, have the car serve as the waiting room until the exam room is sanitized to avoid exposures. 

The good news is that there is quite a bit of  flexibility in the HPV vaccine schedule, so being off schedule with healthcare provider visits doesn’t mean you are off schedule with vaccine doses. 

  • For children under age 15 who had received their first dose of the vaccine, they aren’t due for the second dose for 6-12 months, so there is a lot of flexibility in the time to reschedule. 
  • Children and adults 15 and older get a three-dose schedule, with the second dose following 1-2 months after the first, and the third dose at 6 months after initial injection. But the primary impact on efficacy is getting vaccines doses too close together, not spread out too far. The CDC writes in its summary of the recommended HPV vaccine schedule that “If the vaccination schedule is interrupted, vaccine doses do not need to be repeated (no maximum interval).”

What We Can Do

Remind women to keep up with their annual women’s health visits, including Pap and HPV tests. Remind parents of tweens and teens to not forget about getting their kids the HPV vaccine and all of the protections it offers. 

Life may look different. Schools may be different. Work may be different. But the need for vaccines remains unchanged, and the protective health benefit they offer more is critical than ever!

I’m Done With Treatment, But Treatment Isn’t Done With Me

I recently celebrated my 31st birthday. Around this time last year, I was a brand new 30-year-old enjoying summer with my awesome husband and 3 amazing kids. I never suspected that two months after I celebrated that milestone birthday, cancer would invade my life.

On the day my OBGYN found my tumor, I left her office sobbing. I walked the long way through the parking lot, sobbing. I didn’t care who saw me. The diagnosis was so hard to cope with. I couldn’t align myself with my new reality. I searched every part of my soul to come to grips with what I felt was the end of my life.

“I can’t have cancer. I’m young! My kids are so young! My husband’s going to be a widower, he doesn’t deserve this! My kids are going to grow up without me! They won’t remember me. I have so much left to do here,” I thought, my brain in overdrive. I felt betrayed by my body. 

Treatment was the longest, weirdest dream I’ve ever had

I began treatment. The plan was 6 rounds of chemotherapy, 30+ rounds of external radiation, and 5 internal radiations (brachytherapy). I now call treatment the longest, weirdest dream I’ve ever had because I felt like I was in a fog the entire time. My body was so weak. I barely ate. I slept all the time, but not deeply or comfortably. I felt restless. Thank goodness for my husband, my sister and my dad. They helped me daily. I remember trying to vacuum one day and nearly collapsing. It was so hard to take a back seat to everything. From not working or doing basic chores to watching as others took care of my children daily. That wasn’t me. Everyone who knows me knows that I am fiercely independent.

At the beginning of treatment, I had hand-drawn a calendar to count down to when I’d be done. With each day that passed, no matter how weak I felt, I always remembered to make another “X” on the calendar. It was a long 9 weeks. Treatment ended for me on December 13th, 2019. It was a Friday, and I joked that this nightmare was ending on Friday the 13th. To live up to its name, on that day – my last round of external radiation – the radiation machine that worked so faithfully all those weeks was broken. I stood there with my family (who all came for my last day) and waited around with a full bladder – which was the requirement before receiving radiation – for over an hour. I remember thinking, “Can’t I just get this over with?! I’m so ready!” Right at my breaking point, I heard my name over the intercom and 10 minutes later, I was done. I said goodbye to the amazing doctors and nurses who took care of me all those weeks.

I did it! I’m done!  I can move on forever. Or so I thought…
How naive I was to think that! I’ve learned over the past months that even though I’m done with treatment, treatment is not done with me. I’ve dealt with a plethora of side effects:

For a whole month after treatment, I had what felt like a never-ending UTI.

My bowels are a mess.

What I thought was an upset stomach one late February night has proven to be another side effect from radiation.

My joints ache.

My body doesn’t feel like a 31-year-old. I’m going through menopause! The physical symptoms are many, but the mental stuff is particularly hard. There are highs and lows. I’ve lost two friends over the past few months to cervical cancer. It does something to you to see other women with the same disease pass away. My heart breaks daily for their families.

NED (but there is still the physical and mental evidence of my cancer)

I had my first post-treatment PET scan in March and received the wonderful news that I had “No Evidence of Disease.” In the cancer world, “NED” is a term everyone wants to hear.

NED brings people to their knees.

We rejoice. We celebrate. We still worry, of course. I think I always will, and the aftereffects of treatment continue to bring challenges. But having cancer has given me the gift of perspective. I gladly accept each day that comes. I am thankful for my family and friends. I am thankful for all of the small things that bring me joy.

Even with everything I’ve been through – all the procedures, side effects, and pain – I’d do it all again to be here with my husband and children. I’d do it a thousand times over.

My body: How can I not love something that has fought so hard for me to be here?

I am most thankful for my body. I’m proud of it for everything it has been through and how it still keeps going. All of my physical insecurities have been put to rest.

How can I not love something that has fought so hard for me to be here? That’s what I am. I’m here.  I’m still here! 

About Natasha:

Natasha is full time work-from-home/homeschooling mom of three who enjoys taking photos of anything and everything, traveling, reading multiple books at the same time, and finding new places to show her kids. Read Natasha’s Cervivor Story here.

A Colostomate in Honduras during COVID-19

Honduras is a beautiful, tropical country located in the center of Central America. Honduras boasts of beautiful beaches, forests, mountains and people.  I love living in Honduras, just going anywhere and being able to see the mountain ranges and the skies are worth it.

Nevertheless, statistics show that 991 women are diagnosed with cervical cancer each year in Honduras. Cervical cancer is the first cause of death in women next to breast cancer. Fortunately, in 2016, the Honduran government approved the HPV vaccine for girls. Private medical facilities provide the vaccine for the rest of the population.

When I was diagnosed with cervical cancer, I did not know anything about it. I was the first person that I knew that had this type of cancer. After cervical treatment I developed a rectovaginal fistula. One more thing I did not know existed. To help me heal or have a better quality of life, my following treatment was getting a temporary colostomy. Another first in my life. I knew little about ostomies; I met a person who had an ostomy but he never spoke of it.

A colostomy is an opening in the large intestine bringing the end of the colon through an incision to the abdominal wall. That was the first thing I learned about a colostomy. My doctor was extremely helpful in giving me materials and support, but I felt so lost. I went online to look for information or anyone in Honduras with a colostomy. I did not find a person to talk to about it. Google and other websites were my go-to for information and tips. 

When surgery came and I had to order my ostomy bags, I had no idea what I was doing. I called hospitals in my country and they said we have this type and that is it.  So, I ordered from Amazon, and bought what I thought might be helpful and easier for me to accept (I was in denial of my ostomy up to the day after my surgery when I felt the relief).

Buying supplies in Honduras is not easy, in fact you call medical suppliers and they do not know what you are asking them for. I’ve only found one supplier that understands ostomies but does not provide the specific brand I use. The brand I use in not available in Honduras. I am very adamant about my ostomy supplies; I want to be comfortable and feel safe. It took me a year to find the perfect match with my stoma and my colostomy bag. I buy online in the U.S. and have it sent to me via a courier service. On a regular basis it takes three weeks for me to get supplies to my house. I always plan ahead and have enough supplies for two months at any given time. 

When COVID-19 made its way to us, Honduras was not ready for anything that came after March. Everything just seemed to be chaos as our country started closing up. With that being said, when quarantine came, I had just received a shipment of my supplies and in mid-April I ordered more, the usual amount, I wasn’t worried, I had stocked up. Then June came and I only had supplies for the first week and no news of my order. Countless emails and calls, and I still had not received anything. I ordered more, just in case, hoping this new order would get here sooner. I called and asked countless times for my orders. First, they got to my courier late, then customs took months in letting them through. I hated listening to this response repeatedly: “Your package is here in Honduras, it’s in Customs, and it has not been released yet.” I was lucky that a medical supplier here had supplies, but since they are not what worked best I went through them quickly. It took my ostomy bags four months to get here, and the order came incomplete. I am still waiting for the next shipment and completion of the first. 

Anxiety hit me hard in June and July. I was so mad that this was happening. I woke up one day crying, because the bags I was using were causing an allergic reaction to my skin. That same day, as I was moping all over the place and making everyone miserable, I remembered that I was still here. Even though this was awful and infuriating, I was still here. I allowed myself to grovel for one day, let it out, release. The next day I took a long bagless shower, and placed a new bag on, and even though the rash was still there, I was going to go through it and wait for my supplies to get here, I had to be positive. When they finally did get here, I cried again (blame it on the menopause). It was like opening a birthday present!

Being an ostomate in a country where it is considered a taboo and there is little information and supplies, is awfully hard. I am incredibly lucky that I have a good relationship with my doctors, and when I have issues, I can text them and they’ll get back to me quickly. Having this support is extremely helpful. But sometimes you need support from someone who understands physically and emotionally what you are going through. It took me a little over a year to meet Hondurans with ostomies. Just knowing that there are people out there with an ostomy and that you are not alone is helpful. I have not personally met them but being open to share your story helps others open to share theirs.  Using social media helps a whole bunch.

My ostomy came to me due to cervical cancer treatment. I’ve named my stoma Jeepers, because he creeped up on me. I am a proud ostomate, I’ve learned to accept my ostomy and to talk about it openly. It should not be a taboo or something someone cannot discuss.

Karla Chavez is from Honduras and she is a civil engineer and amigurumi enthusiast. Karla is a 3-year cervical and thyroid cancer survivor and a proud ostomate. She is a Cervivor Ambassador, a 2019 Cervivor School graduate and is a key support to our growing Cervivor Espanol community.

Gratitude Awakening

Dogwood in bloom.

A sense of deep gratitude is something that I have carried with me since finishing treatment for cervical cancer. Especially during those first phases of recovery when you feel like you’re stepping out of the fog and back into the world. It was overwhelming to go outside and have my lungs fill with fresh air, feel sun on my skin, and to finally have an ounce of energy with which to enjoy it. I would walk my dog every day and take it all in with my (cautious) sense of victory over cancer. No phone to distract me, just the awe of what once felt so mundane.

Cervivor School Cape Cod 2018

Like so many of my Cervivor sisters, I had a complete shift in my mindset after going through cancer. There’s a level of gratitude attained after being isolated and having your mortality hanging over you like a dark cloud every single minute.

The sick feeling is so strong that it’s hard to imagine ever being able to feel better. I remember spending those hard days thinking about what I would do once it was all over. I mainly daydreamed about family gatherings with yummy meals, or spending time out in nature. The shift in mindset also pertained to relationships. I was alive, and ready to live my best life. That meant deciding what, and who, was worth my time and effort. It meant ditching behaviors that didn’t serve my purpose, and creating boundaries where needed to stay true to what was important to me.

In this uncertain time of the COVID-19 pandemic, the whole world is getting a taste of what it’s like to be threatened by their environment, stuck with their worries and no sense of control over any of it. I see friends beginning to talk about what they’ll do after this is over, and what I see is so similar to my own experience. People aren’t talking about going on a lavish vacation; they just want to get their nails done. Or hug a neighbor. See a movie in the theater. Catch up with friends in person. Not have to disinfect groceries. Normal, everyday activities that were previously taken for granted are now desperate aspirations. That is what it feels like all the time for those fighting cancer, but at an even more basic level. Personally, I dreamed to be able to walk four feet to the bathroom without breaking a sweat. Not having to be bathed by my partner while holding the wall for support. Feeling fresh air on my face and having real light shine down on me after recovering indoors for so long. Walking up a flight of steps all by myself. Holding down food. I learned that being mad about my situation didn’t make it go away. There was no workaround. The only way out was through. 

Pretty Azaleas blooming in my yard.

Having been faced with all that and making it through to the other side, I was going to start living my life unapologetically and with a renewed sense of appreciation for what matters at the core. When you can no longer do such simple functions, you learn what matters in life, and what really doesn’t— like the ten extra pounds gained from coping with a very scary time.

My hope is that when the pandemic is over and everyone can come out of their homes and go back to work, that a prevailing sense of gratitude will make the world a bit softer of a place to be, for the short time that we’re here to enjoy it. I hope people will see that the time to live your life is now. I hope when regular life resumes, and it will be that ever present “new normal” us cancer survivors so often speak of, that people don’t forget what it was like to have the rug yanked from under them by circumstances beyond their control. Hard times make us strong and perspective, makes us compassionate. I am grateful that we still have the wonder of the outdoors to soothe our souls, Zoom to see our friends, and for the people working so hard to keep us safe and healthy. 

Mary Baker is a three year survivor of stage 3B cervical cancer. She is an advocate for women’s health, a mom of two and proud Cervivor Ambassador and Cervivor School graduate. 

New Cervical Cancer Screening Guidelines: the Good, the Not-So-Good & the Need to Educate

Recently, the American Cancer Society updated its cervical cancer screening guidelines. There are significant updates that we as survivors and advocates should be aware of.

The new guidelines recommend initiating cervical cancer screening at age 25 and that primary human papillomavirus testing (HPV testing  alone, without the Pap test) every 5 years be the preferred method of testing through age 65. This is a significant update to the previous ACS guidelines, released in 2012, which recommended screening starting at age 21 with the Pap test, then at age 30+ screening with the Pap plus HPV test every five years.

The Good:

  • The proposed shift to fewer, less frequent testing starting at a later age, is in large part due to the broadening adoption of HPV vaccination in the U.S. and the impact HPV vaccination has on the public health landscape. This is good progress from where we were a decade ago! With more and more of the population vaccinated against HPV, screening should and will evolve.
  • Compared with today’s current approach (Pap testing alone beginning at age 21 and switching to Pap+HPV co-testing at age 30) the ACS reports that starting with primary HPV testing at age 25 “prevented 13% more cervical cancers and 7% more cervical cancer deaths.” This could be achieved “with a 9% increase in follow-up procedures, but with 45% fewer tests required overall.” 

So for women who despise the stirrups, perhaps this is good news. But…

The Not-So-Good:

The data that ACS shares is good news: preventing more cervical cancers and preventing more cervical cancer-related deaths are goals we all share. But as survivors of cervical cancer – many of us young adults when we were diagnosed – our lived experiences don’t ring true with the ACS’ recommendation to delay the start of testing to age 25, with a 5 year interval between tests. 

Our top line concerns:

  1. Many of us were diagnosed in our early 20s. It may not be the “statistical norm,” but we know from direct experience that it is our norm. Delaying the start of cervical cancer screening to age 25 is concerning.
  2. While we are proud of the strides in uptake of the HPV vaccine, the National HPV Vaccination Roundtable reports that at this time, approximately 65% of teens in the US have received the first dose. But we are not “there” yet. ACS is changing its recommended guidelines based on the successful adoption of the vaccine, but we believe this needs to be accompanied by ongoing concerted, collaborative efforts and education to continue to increase the vaccination rate. 
  3. We remain concerned that the five year interval will separate women from their healthcare providers. For many women, an annual health visit is the only time they see a health care provider – and so many discussions and screenings happen beyond a pelvic exam. We are concerned that 5 year screening intervals have the unintended consequence of women further delaying visits to a healthcare practitioner. 
  4. To put it simply, we are concerned that with this long interval, far too many women will fall through the cracks. Will miss follow-ups. Will miss screening altogether. We are particularly concerned how this impacts the racial disparities that already plague this disease. We are concerned about any unintended consequences and want to make sure they are fully understood and vetted by policy and guideline experts. 

The guidelines were just released by ACS in early August and are still being absorbed and debated across the cancer community. While these new guidelines point to the future of cervical cancer screening in a post-vaccine world, these changes will not be immediate. In fact, the guidelines specifically clarify that using HPV testing in combination with a Pap test (“co-testing”) every 5 years or Pap tests alone every 3 years “remain acceptable options for now, as not all labs have transitioned to primary HPV testing.” It is no surprise, however, that the downstream impact of broader HPV vaccination is a change in screening practices. But what doesn’t make sense is the lack of education to accompany these guideline recommendations.

Our Key Take-Away: Our Stories Have Never Been More Important

Now more than ever we need to elevate our voice, educate and share our stories. As cervical cancer survivors, we and we alone can speak with unique authority about the disease and how it affects lives. 

As a Cervivor community, we know the need for ongoing education about cervical cancer prevention and screening. We need more women to understand why they are getting screened, what Pap and HPV tests are looking for, what results mean, and what the recommended testing intervals are. We need to make sure that women appreciate that a change in recommended intervals for a pelvic exam does not mean the end of annual health visits. 

Importantly, we need to encourage and educate women to be proactive participants in their own health. 

To engage their health care providers in conversation. 

To ask questions and to seek clarifications. 

To engage in discussion and shared decision making with their healthcare team. 

To trust their bodies if they feel like something isn’t right. 

With policymakers, we need to ensure that within any guideline shift there is room for consultation and shared decision-making for women and their healthcare providers. 

Rest assured, your Cervivor leadership is in the process of engaging in discussions with policymakers, providers and experts to seek clarity and fully understand the guidance and its impacts. But what remains essential is our proactivity in sharing our stories. In being the voice and face of cervical cancer. In making the disease real and un-ignorable and un-stigmatized. In being a force of education. 

ACS may have new statistics, but we have the stories. And our stories have power. Our stories tell the “why” behind screening. Our stories are what make screening relevant to women. 

Now more than ever, share your story. 

Remind women to keep up with their annual health exams and cervical cancer screenings, at whatever interval they’ve discussed with their provider. 

Encourage young women to get the HPV vaccine. Encourage parents to get their tween and teenage girls and boys vaccinated.

Our stories and voices have an impact. Our stories help educate women. Our stories help inform policy. 

Our stories will help end cervical cancer.  

35 Hospital Bracelets: Symbols Of My Journey With Cervical Cancer

“35 Bracelets”? I am not referring to beautiful gold bracelets that one wears to symbolize something special, or gifts that people give to one another as a symbol of their relationship.


I am referring to 35 hospital bracelets. I was given one each time I had an external radiation treatment. It has been 11 years and 2 months since I was declared cancer FREE, and I still have them.  


Why? As a reminder of where I’ve been, and every step I have taken since then. As a reminder of every single treatment that I had to go through to fight cervical cancer. As a reminder that at one time I was identified by a bar code with numbers. As a reminder of coming face to face with my own mortality. As a reminder of the person I’ve become today. As a reminder to share my story to prevent other women from going through what I did.  

Many cancer patients document their journeys either by writing on their journals, blogs or by taking pictures while going through treatments. Well, I have to say, I didn’t do any of those things. I didn’t write about it, talk about it,  nor did I take pictures of myself while in treatment. Yet, I know it did happen. I have the memories and the scars.


I guess these 35 hospital bracelets tell part of the story, but the memories of my journey are embedded in my mind. I remember what it took for me to get out of bed every single day to go for treatment, I remember every machine used on me and I remember every needle that went through my skin. I don’t put away these hospital bracelets in a closet where I don’t see them. I have them in plain sight. They hang on the side of my refrigerator in a simple Rite Aid® plastic bag. 


Perhaps I can be more sensitive and put them in a nicer bag, but I wont.  That Rite Aid® bag is what I chose back then when I started collecting them one by one. They have been there all 11+ years, and will remain there as a reminder of the work I need to do as an advocate of this disease. I sometimes regret that I did not take any pictures, but at that time, it wasn’t even a thought. Pictures, journals, blogs even these 35 hospital bracelets can be destroyed or lost, but my memories will live with me for a lifetime. 

Patti is a Cervivor Ambassador and Cervivor’s Wellness Instructor. She is a retired NYPD police officer and an 11 year cervical cancer survivor. She resides in NYC with her husband of 21 years where she’s a Group Fitness Instructor and a Health Advocate.

I had data and statistics in my talks, but that wasn’t telling the story that would move people to action

Chair of the National HPV Vaccination Roundtable, Dr. Noel Brewer has given hundreds of talks at scientific conferences and meetings across the globe. He’s advised the Centers for Disease Control and Prevention and the World Health Organization on vaccination.  He’s one of the most cited researchers in the world. His credentials are impeccable, yet much of the time when he starts a talk, he defers to the experts: patients.

His solution: “Always have people speak who have had the experience. When someone speaks who has had direct experience with cancer, it clears out the mental clutter. It makes you feel. It sets the stage for the important work that will follow.”

Dr. Noel Brewer has shared Lisa Moore’s Cervivor Story hundreds of times to “help people grasp the importance of preventing cancer.”

“To hear about the diagnosis and that awful waiting period. About what they have gone through – the symptoms, the damage caused by treatments, the possible loss of fertility.  These are key parts of the story that survivors can speak about in a personal way that doctors, scientists and other experts simply cannot.”

“As scientists, we often talk about cancer in abstract and technical terms. We convey a lot of important information that doesn’t connect with people’s feelings and imagination. But how can we help people grasp the importance of preventing cancer?” reflects Dr. Brewer.

Dr. Brewer regularly starts his talks with the voice of Lisa Moore. Lisa died of cervical cancer in October 2017, at age 31. Yet through her powerful Cervivor story video, she has educated and impacted thousands.

“I had data and statistics in my talks and trainings, but realized I wasn’t telling the full story. So now, I leave that to Lisa Moore. In her video, she tells the story of her fight with cervical cancer. It’s one minute. It’s powerful. It’s heartbreaking. Every time I show the video, I’m moved by it. And I’ve seen it more than 150 times.”

“At first, Lisa is sitting. She is sewing. She tells her story in very simple and concrete terms. We see her partner in the background, watching her. Every time I show it, people pause and struggle to collect themselves. We sit with Lisa. We feel her pain and her call to action. We take a deep breath together, then we get focused on the work of what we are going to do to prevent cervical cancer.”

Lisa was a true champion for prevention. She educated and advocated and was telling her story…until she could no longer. Lisa lives on in her Cevivor story and in her video, and her passion for prevention and call to action has been seen, heard and felt by researchers, healthcare providers and policy makers around the world. Not just through Dr. Brewer’s use of her video into his talks, but by many others.

“I do many ‘train the trainer’ sessions about HPV vaccination, and connections happen based on Lisa’s video. People often come up to me after, asking if they could also incorporate Lisa’s video in their own outreach. Working with Cervivor, we’ve shared the video many times and amplified the reach of Lisa’s message.”

In video or in person, “Cancer survivors speak with certain authority,” says Dr. Brewer. “You are a moral voice on cervical cancer and all of the ways it affects lives. I don’t know anyone who can speak as powerfully.”

“We’ve shared her video at Cervivor events, and it has been seen and shared many times via our social media platforms. But Dr. Brewer is the one who has really helped to get Lisa’s story to the masses and I am personally thankful to him for that,” said Tamika Felder, founder of Cervivor. “Lisa wanted her story to be shared. She wanted the world to see that not only what cervical cancer had done and taken from her; but also, that it in fact it was not an easy cancer. She wanted her story to help get people vaccinated against HPV so they would not have to suffer the same fate. Dr. Brewer has helped me keep my promise to Lisa. For that I am forever grateful.”

Are you sharing your story?

If you haven’t yet, add your story to our Cervivor Stories. Write a blog post about your experience or your advocacy or about a milestone or simply a memory or reflection and send it to [email protected]. We can publish it and add it to the voice and reach of our Cervivor blog.

As Dr. Brewer reminds us, stories matter. Stories motivate. Stories change minds. Our community’s work sharing our stories is powerful.

A professor of Health Behavior at the University of North Carolina Gillings School of Global Public, Dr. Noel Brewer studies health behaviors. He examines ways to increase HPV vaccine uptake, and his research led to the development of “The Announcement Approach” to train providers to communicate more effectively about HPV vaccination and other vaccines for adolescents. Dr. Brewer chairs the National HPV Vaccination Roundtable, which brings a wide cross-section of stakeholders together to raise HPV vaccination rates and prevent HPV cancers.

The Nurse Becomes the Patient

Karen is a breast cancer survivor, a cervical cancer Cervivor and a registered nurse (RN). She shares her unique perspective of being on “both sides” of the healthcare system – as a provider and a patient:

I was working as a nurse when I got “the call” – my gynecologist telling me over the phone that my Pap was abnormal and that I needed to have a biopsy. I didn’t get terribly scared at that time. I knew what a biopsy was. I knew what HPV was. I knew what an abnormal Pap was. “It’s just a biopsy looking for more information,” I’d reassured myself. When the results came back cancer, I wanted to vomit. 

The Google “black hole” that even nurses can fall into

Explaining everything to my family was emotionally hard for me. Before I could do that, I personally needed to have a plan, I needed to feel I was in control. I researched nursing school materials, cancer organizations, cancer statistics and treatment plans. I learned early that the last thing anyone with any type of cancer should do is “Google it.”

As a nurse, I had access to quality medical sources. I had credible people I could call. But the lure of Google is strong. As a healthcare provider, I’ve had patients get on blogs and forums and come to me scared by something someone had said – often something that had little to do with their own individual case. Google is a black hole for so many. Even for me at times, even with my nursing training. I’m thankful I had a network of friends who were also nurses to reach out to for information. 

The caregiver becomes the patient

As I began treatment, I was able to immediately bond with my oncology provider nurses and the surgery nurses. Many times, however, the care staff had to remind me that I was the patient and to stop trying to do things that I shouldn’t be doing! I’ve heard that doctors are the worst patients. I admit that nurses have got to be too. 

I think because I was a nurse, I tried to be particularly “helpful” when I was in the hospital receiving care. Having worked with residents and medical students before, I was very open to them watching and asking questions. I often told residents and medical staff in training that they can ask me anything, they just need to know that I don’t have a filter when I answer. I tell them the down and dirty truth!

As a nurse, not being in the position of caregiver can be a challenge. Many times nurses will put their own personal needs behind everyone else. So having my family and friends take care of me warmed my heart. Going through radiation and chemo treatment was difficult. I had nausea after chemotherapy (I can’t even look at a Goldfish cracker anymore). I had muscle spasms and diarrhea (I called it “liquid death”). My family and friends taking care of me showed me their love. There is a saying “what you give, you can get back tenfold.” I definitely felt swaddled in love. They even organized a fundraiser to help me with my expenses.

The endurance challenge of returning to nursing after cancer treatments

The first part of July 2016, I returned to my nursing job. I think this is one of the hardest jobs to return to after cancer because of the time on your feet and the endurance needed. What normally only took me 15 minutes would take me an hour to complete. My legs felt like I had concrete in my shoes. I needed to be able to go to the bathroom at a moment’s notice because of diarrhea and bladder issues. My body hurt everywhere. I had panic attacks that were debilitating. I felt guilty because I knew I wasn’t holding up to my standards of care. There were many times that I worried that I would make mistakes. There were also several times that my charting was done late because I couldn’t get to it with everything else going on. The best analogy that I can think of is “this is like running a marathon on crutches.”

Ultimately, I had to leave my job. I fell into a dark pit of depression and anxiety. 

The past few years since my cervical cancer treatments have been rough. I’ve had to have repeated biopsies because of abnormal Pap results. I’ve seen a gastroenterologist, a urologist, and an orthopedic doctor along with my psychiatrist and counselor. I’ve been diagnosed with radiation colitis that causes me severe abdominal pain and diarrhea. I’ve had to have my hip replaced because of a tear in the cartilage that wasn’t repairable due to the radiation. My depression and panic attacks are still debilitating. I also have been diagnosed with lymphedema of my right leg. I have to elevate my legs four times a day for 40 minutes – above my head, mind you! I also have to wear compression hose and hook up to a machine that pushes the fluid out of my leg every night.

These days I’m working at keeping my head together. It’s one day at a time, and sometimes, one minute at a time. With the help of my family, friends, medical teams, and my Cervivor community, I’m surviving.

Educating doctors and nurses about cervical cancer prevention

With the help of Cervivor and my training at Cervivor School, my goals now are to educate and advocate to general practitioners that they need to discuss HPV immunizations with every patient, no matter their age or sex.

My goal is to promote education to medical providers so that they will in turn educate their patients and friends on HPV prevention and the importance of the annual women’s health exam. I reach out to medical schools to connect with medical students and residents. I want to share my story with them, have them hear what I went through as both a nurse and a patient, and encourage them to be more proactive when it comes to cancer screening and prevention. I think being a nurse and speaking to them as a nurse and not just a patient can be particularly powerful.

Also, because of my nursing training I can be an effective communicator about HPV immunization and screening and will convey information in a way that people will understand. Like, when you talk about there being more than 400 different strains of HPV, only some of which can cause a cancer. I can relate it to different strains of the flu or the cold, so that people can grasp a little bit better idea of it. 

I am proud to say that I am a Cervivor Ambassador. My Cervivor school training has offered me the tools and understanding of how to listen to others’ questions and concerns and how to encourage them to talk to their providers about Pap testing, HPV testing and HPV vaccination. 

After all, If you don’t ask, your provider can’t answer.  

Karen North lives in Liberty, Missouri. She is a retired registered nurse. Her world is her family, fur-babies, and friends. As of the writing of this blog post in 2020, she is a six-year breast cancer survivor and a, come June,  four-year cervical cancer survivor. 

Read Karen’s Cervivor story.

Read Karen’s blog post on being both a breast cancer survivor and cervical cancer Cervivor. 

The New Normal

I don’t know if I can think of a saying I hate more than those three words. I have heard so many people say, with regards to COVID-19, that we need to get use to the new normal. There is nothing normal about any of this. It is not normal for my kids to not be able to have play dates, it is not normal that my kids school shut down and had to switch to distance learning, it is not normal to have to wipe down every single grocery item that gets delivered with Clorox wipes, it is not normal to not be able to hug your friends and family that do not live in your house and it is not normal to not be able to go anywhere. The list can go on. 

I have heard, “this is the new normal”, or “get use to your new normal” when it comes to my cancer journey too. But let me tell you, there is nothing normal about cancer. There is nothing normal about having a radical hysterectomy, there is nothing normal about having nine stent procedures, there is nothing normal about having to self catheterize, there is nothing normal about having a port inserted into your chest, there is nothing normal about losing your hair due to the poison being pumped through your body every three weeks, there is nothing normal about missing your kids’ activities, there is nothing normal about the strain cancer puts on your marriage, there is nothing normal about having a nephrostomy bag, there is nothing normal about the unexplained fatigue and there is absolutely nothing normal about having cancer. 

You know what does feel normal to me? The constant feeling that I am on a roller coaster except it’s not thrilling. You start off on the ride going extremely fast, your heart is beating out of your chest and you don’t know what is coming up next. Then your ride is steady as you weave around the turns. Up next, you climb the steep hill and then you speed down at full speed and you can’t catch your breath and you’re wondering when is this ride going to end. Right when you think it’s slowing down and you have a grasp on everything, it takes off again and you find yourself going up yet another hill and this time it has loopty loops. This is how I view my current journey with cancer; a roller coaster that I can’t get off and it doesn’t end. A ride that is full of up hill battles and twists and turns at every corner. Despite the gasping for air and the wind in my face feel, I know that this roller coaster is just a detour. The girls love roller coasters and will ride anything they are tall enough for so good thing my roller coaster doesn’t have a height requirement or limit of people because I have the best group of people in my corner. So until my current roller coaster comes to a happy ending, you will find me sitting front row with my arms in the air and the wind in my face. 


Becky was originally diagnosed with cervical cancer in 2018, at age 35, and quickly became an active member of the Cervivor community, joining Facebook Group discussions, attending MeetUps, participating in the September 2019 Cervivor School and becoming a Cervivor Ambassador. She was diagnosed with a recurrence in late-2019, just weeks after returning from Cervivor School. Read her Cervivor story and learn how, amid this most recent diagnosis, her Cervivor Spark and passion to prevent other women from cervical cancer gets stronger each day.

Erica is not physically here, but she is entirely present in the very fiber of what we do at Cervivor

Today marks what should have been Cervivor Ambassador Erica Frazier Stum’s 35th birthday. 

She died December 27th, 2018 from cervical cancer. Yet her passion, her fight, and her spirit live on in Cervivor. Her zest for life, and her never backing down when things get tough, live on in me and in so many of us in the Cervivor community. 

Erica told me many times that she did not believe in an afterlife. She believed in THIS life. Even when she was losing hers. Even when cancer was taking her away from us bit by bit, she was living her life and sharing her story. In fact, she created for herself a “living life list” – deliberately not calling it a “bucket list” but rather an active, living and breathing list of experiences she wanted to have and things she wanted to do in what she knew would be a final chapter in her young life.

She did not get to complete all of the items on her living life list. But in me, in you and in Cervivor, her work continues. Her story, her heart and her passion are in the very fiber of what we do at Cervivor each time we support each other, each time we educate, and each time we share our stories. For me, Erica is not physically here…but she is entirely present.

I wrote Erica a birthday letter today and decided to share it with our Cervivor community. Those of you who knew her may share in my thoughts and reflections. Those who are  dealing with cervical cancer or its aftermath can, I hope, take comfort in her story. Those of you who have lost a loved one can I hope share in the appreciation that our loved ones are still with us, even when they are gone. 

Erica would not like the use of terms like “battle” and “lost.” She would not tell you that she was a “fighter.” In her mind, she was simply a “life liver.” She lived with purpose and meaning and passion. ” I tried to do my best to honor her in that way. This is for you, Erica.

Dear Erica,

I remember meeting you. We were in touch via email at first. You were preparing to head to our Cervivor School in San Diego in September 2015. You were sick. I told you not to come, as I was concerned about you getting on a plane. You came anyway. You couldn’t stay away – despite or because of everything, you wanted to more directly engage in our work and our mission. You challenged me. You challenged yourself. You challenged the world. And you changed it. By the end of 2016, you’d attended four Cervivor Schools – to not only keep honing your own advocacy and story-sharing skills, but to serve as a mentor to other Cervivors. In the midst of  dealing with this disease, you became our Lead Cervivor Ambassador. You became one of our most dedicated patient advocates. 

While fighting to end cervical cancer, you were losing your life to it. Yet, even when your diagnosis was clear that the cancer was terminal, you shared, you educated and you advocated. You did this from home, from your hospital bed and then ultimately, from your hospice bed. In your life and in death, you are a testament to why our work matters.

Erica, you would be so proud of Cervivor and all of the work we are doing as a community. Despite this pandemic, we’ve creatively found new ways to connect, educate and support each other. (You would have been all over the virtual scavenger hunts!) You would be so proud of your family. Your husband JR has shared  your story and motivated so many to get the HPV vaccine for themselves and their children. Your parents and siblings remain actively engaged with us, hosting fundraisers and  donning teal and white on Tuesdays then sharing posts on social media to inspire and educate. Your closest friends have shown up in so many ways. Gretchen even got the HPV vaccine. And, yes, they are on message! Mallory makes sure of that. And Wylee. Your son. He’s so big now. You would be so proud. 

Erica, you would be devastated to know that cervical cancer still takes its toll. That women here in the U.S. and around the world are still losing their fertility – and their lives – to this entirely preventable cancer. I know you would be angry as hell. And I know that frustration would fuel you to action. I know you would remind all of us to keep going, and keep educating, sharing and advocating and never give up, no matter how sick and tired (literally and figuratively) we might be. 

You’d be proud of our recent Cervivor School graduates, our Cervivor Ambassadors, our story-sharers, and the members of our online communities who post and share and support in an ongoing conversation that serves as a lifeline for so many of us. There is so much of you in each of them. In all of us.

You are not physically here, but your story, your words, and your message is still comforting people, educating people, changing hearts and saving lives. We miss you.

I miss you. 

Join me in honoring Erica today by creating – or adding to – your own living life list. She’d want us to live fully, embrace new experiences, tackle challenges, support each other, and plug into our skills and passions to end cervical cancer.

Happy Birthday, Erica. 

xo Tamika 

Beads with a Purpose: To “Feel that Person in Your Heart”

When Chanel’s mother passed in 2018 of a heart condition, she was beside herself with grief. When Chanel had gone through her cervical cancer treatment, her mother had been her rock of support. “My mom was the first person I called when I found out. She slept with me in the hospital. She cooked for me and my family while I was recovering.” Her grief launched Chanel down a unique path of remembering loved ones, celebrating survivorship and celebrating life.

“I was reading an article about dealing with grief, and one piece of advice it gave was to take up a hobby,” said Chanel. “I love jewelry and accessories, so I bought some beads, watched some classes on YouTube and started making bracelets and necklaces.”

Today, her bracelets celebrate the fight against cervical cancer and memorialize those we’ve lost.

“At first, I started making my bracelets in all colors. Then I found some cancer awareness charms online and incorporated those. Then cervical cancer awareness month rolled around, and I went teal and white.” Today, her whole workspace is teal and white. “I even found a teal desk chair,” Chanel shared proudly.

As she crafted, her bracelets became more personal.

Chanel felt alone when going through her cervical cancer treatments in 2013 (read Chanel’s Cervivor Story) until she found Cervivor’s Facebook page. She posted, looking for women close to her in Atlanta. A fellow Cervivor, Teolita, replied right away. They connected, chatted and befriended each other. Teolita and her mother were planning a cervical cancer awareness event and extended an invitation. Chanel attended, armed with teal and white bracelets “to give out and to bless women with.” She, Teolita and Deborah – another Cervivor in the area who she quickly bonded with – took a photo together, smiling proudly about the successful event at which they were able to share their stories and educate about cervical cancer prevention.

Today, that photo sits on Chanel’s desk.

Today, Chanel is the only one of the three still with us.

Teolita passed in August 2019. Deborah just recently lost her battle with cervical cancer in April 2020.

“It hits me hard, every time I look at that picture. I am the last one. ‘Don’t go into survivor’s remorse,’ my pastor counseled me. I figured the Lord must have a reason for me to still be here. I knew I needed to be active in the cervical cancer survivor community and to get the word out about cervical cancer prevention. I knew that was what Teolita and Deborah would want.” She made use of her photo to make charms, then made a bracelet with a photo charm of Teolita, a photo charm of Deborah, and angel wings. She shared them with their families. She saw the meaning it brought.

Today, Chanel is a passionate advocate for cervical cancer prevention. And, her bracelet making has become a small business as she fills orders for photo charm bracelets and survivorship bracelets from members of her church, her friends, Cervivors, and for people who find her on Facebook or Instagram. Chanel’s bracelets are not just for memorial purposes, but also to celebrate survivorship – like the bracelets she’s made with a boxing glove charm and the words “fighter” and “survivor.”

“These bracelets have meaning. That’s why I love doing this. When you wear them, you feel something in your heart.”

The memorial bracelets in particular are her special way to support people grieving.

“I don’t make these so that people should feel sad. I make them so that people can feel that person in their heart, can still feel close to the person and can still cherish their memory. I love making these because I know what they can mean to someone.”

“People have told me they often cry when they receive my bracelets. But I’m not trying to make people cry. I’m trying to celebrate life.”

Chanel lives in Conyers, GA and is always looking to connect with Cervivors in the area. Read her Cervivor Story and see more of her bracelets on her Facebook or Instagram.

Surviving Through Music

Our world is feeling great pain and uncertainty right now. Cervivor created a music video to show hope, love and strength within our cancer community but it reaches far beyond cancer — the message is truly universal.

The song that inspired this video, The Will to BE, was written by my caregiver and husband Pete. I love being married to a musician because our house is always filled with great music. Pete says that creating music from his heart for the world to hear, makes him feel like in some small way, he’s creating happiness.

During my cervical cancer diagnosis, multiple treatments and surgeries and three reoccurrences, Pete’s music truly lifted me up and gave me the spark I needed. His music was always on my ‘Chemo Playlist’ and I’d listen to it when I just needed to calm my mind and body.

Cervivor created a music video to show hope, love and strength within our cancer community but it reaches far beyond cancer — the message is truly universal.

Pete also knows all the women of Cervivor through their stories. These stories are the fabric of this song, weaving through emotions we carry as cancer patients, survivors and thrivers.

In 2017, California was experiencing literal storms and relentless rainfall. Everything around us was falling apart with no end in sight. During one of those storms, Cervivor founder, Tamika Felder asked Pete to write some music for Cervivor. 

He immediately drew parallels with the storms and cancer which inspired the opening lyric, “Been a long rainy season. The tides and winds headstrong. It batters our lives and we don’t know for how long.”

When you have cancer you give up a lot normalcy in your life and it doesn’t change when or if your cancer ends. You look at life differently; you are navigating through uncharted waters. 

Sometimes you’re drowning in fear and it takes every ounce of strength to get through the day. We hold on to hope, this four-letter word that becomes our lifeline. 

This song speaks to anyone who has faced deep hardships. The women featured in this video are beautiful and real. We are your neighbors. We are sisters, daughters, mothers, aunties and cancer is forever part of our lives. But we refuse to let cancer define us. We are living our lives and not forgetting what brings us joy.

The Will to BE is a song of truth and unpredictability but importantly the will to be loved and strong and needing to belong.

We hope that this song and video will fill your heart and show you that despite what cancer takes away, it leaves space for us to fill with gratitude and hope.

Pete and Cervivor Ambassador Carol live in Northern California with their fur baby, Ace the Dog, who can be usually be found at Pete’s feet in his music studio. They also have two amazing grown kids, Michael and Sydney, who are Carol’s inspiration to thrive.

When I was young, I was a Girl Scout – which meant selling Girl Scout cookies (of course)!

I have a vivid memory of sitting in our laundry room, door shut, with (somehow) the phone pulled in there too as well as the family address book, and the school and church directories…calling pretty much everyone we knew to see if they would spend their money buying cookies from me.

My mother made me do it. “It’s good for the cause and good for your character to do this,” she said.

I hated it.

I did not like the feeling of cold-calling people; not sure if they would know who I was much less say yes to buying cookies from me. It made me nervous. It made me anxious. It was unpredictable. I would much rather have done anything rather than spend time asking people for money.

I hated it.

For the record – I sold the most cookies in my troop that year, and the prize for doing so was a new boom-box!

Fast forward 30-some years…my willingness to do something uncomfortable (and my mother’s insistence that I do so) has paid off. I’m not so hesitant to ask for money these days, especially if it’s a cause that:

● I believe strongly in,

● One where I know the money goes, and

● One that directly impacts lives AND change.

Cervivor is that organization, and I consider it a badge of honor to volunteer for, represent, and fundraise for all it does and stands for.

As a part of Cervivor’s leadership team, their Lead Advocacy Educator and a Cervivor Ambassador, I get the privilege of seeing firsthand not only what we do as an organization, but where generously donated funds go. My history with this organization began because of such funds as I was the recipient of money that allowed me to attend my first Cervivor School in 2015. After attending that school, I began to see the positive impact Cervivor has not only on individuals and the greater community but also the impact it has on change. Cervivor is an agent of change. So much so that over the course of 5 years I’ve been able to become a part of that change by having the tools, motivation, confidence, and opportunities to share and leverage my HPV and cervical cancer story in many ways and to many people. I’m also able to be a part of helping others experience this too.

The work that I do for Cervivor, the hours and hours I spend volunteering my time, fulfills me because I not only see change happen, but I get to be a part of training and supporting patients and survivors of cervical cancer which ultimately enables them to become a part of that change as well. In essence, I get to not only see the change, but I get to see it grow too! My primary role as the Lead Advocacy Educator is putting on Cervivor School each year to train new advocates, but I also work to sustain their advocacy efforts and education indefinitely after they leave Cervivor School through routine Cervivor Ambassador calls, mentoring others to share their stories and advocate, hosting Cervivor Chats with experts that impacts our advocacy, and more. I’ve become passionate about training others to be advocates not only because I see that it empowers them as individuals in their own lives, but because I get to see the increasing change in our collective work to eliminate cervical cancer one day.

So now it’s time for me to do the very thing I hated doing so many years ago – ask for money. This time I do so with confidence, pride, and love because:

● I strongly believe in the work we do at Cervivor – otherwise I wouldn’t dedicate so much time and energy into it myself!

● I know where the generously donated money goes – I help to plan and organize just that!

● I see how it impacts lives AND change – I’m living proof of it!

And no, my mother is not making me do this :-).

Will you please donate to Cervivor and help us continue all of our efforts to be a part of eliminating cervical cancer?

For the record – I’ve raised over $3500 for Cervivor and the prize for doing so is impacting lives AND change!

Heather Banks is Cervivor’s Lead Advocacy Educator and recipient of the 2016 Cervivor Champion Award. As a 12-year cervical cancer survivor, she is an active advocate for HPV and cervical cancer awareness and prevention. Heather’s advocacy efforts have included testifying to the FDA in 2013 for co-testing efforts, speaking to government representatives in DC, and becoming a member of Cervivor’s Leadership Team. Heather lives in Indianapolis, Indiana where she is an Instructional Coach and Specialist at the elementary level. She loves spending time with her husband and two children; ages 15 and 12.

“I Looked in the Mirror and Saw a Warrior Looking Back at Me” – Video & Interview

Becky, a young mother from California, came to Cervivor School in September 2019 to learn how to fully and effectively share her cervical cancer story. Just two months later, she faced a recurrence: a diagnosis of an aggressive cancer in her liver and pelvis. Becky shows in a Cervivor story video what it means to embody the Cervivor Spark. Amid her devastating news and the restarting of chemo, Becky gathered her daughters, family and friends to join her in shaving her head. We spoke to Becky about the video, her inner strength, her Cervivor Spark and how shaving her head in an empowering way enabled her to see herself as a warrior.

Shaved Head and Cervivor Spark in the Throes of a Cancer Recurrence: Q&A with Becky

1. How did you first find Cervivor?

I stumbled upon Cervivor on one of my many late nights on Google, searching for information. Crying by myself in the middle of the night, I found Cervivor.org and the stories that so many women have shared.  I sat awake in bed the whole night reading story after story. For the first time since my diagnosis – a very dark, scary and lonely road –  I finally found someone who had gone through what I was going through. I related to somebody! I joined the Facebook group and participated in the online conversations. The support I found there from women who GET IT is nothing like I’d ever experienced. After reading all the Cervivor stories and joining the Facebook group, I wanted to find people in real life and went to my first Cervivor MeetUp. The MeetUp was a new beginning for me and is a big part of the path that led me to go to Cervivor School and to become a Cervivor Ambassador.

Becky at Cervivor School 2019

2. How did this video come to be?

Cervivor School helped me to be comfortable fully sharing my story to help other women. It helped me to truly understand and appreciate that the mission to end cervical cancer needs my story, my face and my voice. I knew I wanted documentation of this crazy journey. I wanted to have a video that I would be able to look back on,  especially for my girls. I had already started a Cervivor story video and when I had decided to shave my hair,  I reached out to a close friend of mine and asked her to video that whole process. The video is beyond what I could have ever imagined! The video is perfect. I can’t even tell you how many times I’ve watched it! 

3. Tell us about the decision to shave your head, and the decision to do it surrounded by family and friends. What did that moment mean to you?

I decided to shave my head before I even started chemo again. I knew I was going to lose my hair, but I was told by my medical team that it typically doesn’t happen until after the second chemo session. When my hair started falling out just two weeks after my first chemo session, I knew it was time. Cancer had already taken so much away from me, and I wanted to own my hair and have the power to shave it before cancer also took that away from me.

I have a dear friend who also happens to be my hair stylist, so there wasn’t anyone else I wanted to shave my head. I decided to do it surrounded by my family and friends because I knew it was going to be extremely tough and emotional. But I mainly did it for my two daughters. I wanted them to be part of the process so that it wouldn’t seem so scary to them. Having them be a part of it, and to have them help cut and shave it, was a moment that I will never forget. It was beyond powerful and touching. And it definitely helped my daughters to be part of the process.

Once my head was shaved and I looked in the mirror, for the first time I saw a warrior looking back at me. I no longer saw a weak and lost woman in the mirror. I knew in that moment that I was going to fight with everything I had in me.   

4. The video shows and tells such a powerful story of inner strength and resolve amid a difficult diagnosis, and truly shows what it means to have the “Cervivor Spark.”  How do you keep up the fight and help your “fire get stronger and stronger each day”?

Honestly, it’s my girls that help me fight. I fight for them and it’s their two beautiful faces that keep me going every single day. If there is a day that I just feel defeated, all I have to do is think of my girls and their future and instantly that fire just grows. Before cancer, there wasn’t anything as a mother I wouldn’t do for my girls and that sure as hell isn’t going to stop now. If anything, it makes my role as a mother have more meaning. I look at my girls in a different light now. I will never stop advocating for myself and I will never stop doing my own research because I have two little humans who need their mom and who don’t deserve to go through and see things that cancer has brought into their lives. This isn’t about me. I didn’t give myself that fire. It’s my strong and resilient daughters that deserve all the credit.

Becky and her “strong and resilient” daughters who keep her going, every single day.

Becky was originally diagnosed with cervical cancer in 2018, at age 35, and quickly became an active member of the Cervivor community, joining Facebook Group discussions, attending MeetUps, participating in the September 2019 Cervivor School and becoming a Cervivor Ambassador. She was diagnosed with a recurrence in late-2019, just weeks after returning from Cervivor School. Read her Cervivor story and learn how, amid this most recent diagnosis, her Cervivor Spark and passion to prevent other women from cervical cancer gets stronger each day.

As we know, cancer takes no quarantine.

Cervivor Community, 

The COVID-19 pandemic has brought unprecedented challenges for all of us. Many of us are navigating yet another “new normal”. More than ever we are committed to doing our best to continue supporting patients and their loved ones during this crisis. As an organization we are stronger than ever. We are still a global leader in the cervical cancer space and making our voices heard. This work continues. We have no choice.

But the reality, like so many other nonprofits, we have felt the burden of not being able to have in-person events. 

While the world hunkers down in response to the COVID-19 pandemic, cancer takes no quarantine. Our work connecting women impacted by cervical cancer is as important as ever. Our work building a community of support is as essential as ever, especially for those currently in the midst of treatment who now face a whole new level of challenge…and fear. 

We hope you will use #GivingTuesdayNow to support Cervivor and ensure that we can continue our mission of supporting women affected by cervical cancer now and in the future. 

We understand that money may be tight. If you are unable to donate, please share our fundraising efforts. We need your support. We need our community. You’ll see more and more events that keep us connected while physically distancing. We’ll also continue training patients to become advocates, but to do so we need your support. It is crucial to our survival.

Can we count on you?

We’re stronger together — even virtually. My thoughts are with you all.

Tamika Felder 

19 Year Cervivor 

Chief Visionary, Cervivor, Inc. 

Here I Go Again On My Own: Quarantining (Again!) in 2020

Cervical cancer survivor, graphic designer, frequent journal-er, and now published author Andrea Bonhiver has been experiencing “quarantine flashbacks” amid the current COVID-19 pandemic:

“I spent March 7 to April 22, 2019 basically quarantined in my apartment after surgery for cervical cancer. Here I go again in 2020! Who would’ve thought?”

The feelings of trauma that come with having cervical cancer are VERY similar to what many people are experiencing during this pandemic, Andrea reminds us. “I lived with these feelings of anxiety and uncertainty on a pretty constant basis for 2 years: 

✓  A scary diagnosis. 

✓  Living with something that is potentially life-threatening. 

✓  Not being able to do the things you’d normally do as freely as you’d like. 

✓ Fear and uncertainty about EVERYTHING. 

✓ Questioning everything in my body that feels a little bit ‘off’ and constantly wondering “is that normal?” (As in: My breathing feels tight. Is that a symptom? Is the cancer spreading? Do I have COVID-19?!)”

Amid the physical isolation that many are living through to protect themselves from COVID-19, Andrea doesn’t want anybody – especially not cervical cancer survivors – to feel alone. Certainly not the type of alone that she felt when she received her cervical cancer diagnosis. She’d gone looking for hope and information “in the blue light of the internet” but found mostly “scholarly articles, or scary ones about the invasive and painful treatments I might need, or about survival and recurrence rates. Cold hard facts but very few real-life stories.”

So she wrote her own. Not just as a Cervivor story for our website, but a book: The Cervical Cancer Companion – written to help others “process the trauma of cancer as you experience it.”

Now, Andrea is looking back on her post-hysterectomy, post-surgery isolation to share tips on how to get through the anxiety and isolation many are feeling with the current COVID-19 quarantine.  

Andrea’s quarantine tips for our Cervivor community:

1. Create a “What If” journal. When you feel overwhelmed by the uncertainty and fear, sit down and just let it all out. Bullet out a list of everything you’re afraid of and worried about. Irrational or fully logical. Let it all go. Then go back and try to come up with a statement for each one. “If this happens, then_____________.” You might find that the outcome of each worst fear is not as catastrophic as you have imagined in your mind. And if it is? You *will* make it through.

2. If you need help? ASK FOR IT. I am not at all surprised that as a society we have risen up to support and encourage one another. I saw this first-hand throughout my cancer journey and it was a real window into just how GOOD and SELFLESS people can be. People want to help because they’ve been helped by others, too. Don’t be afraid. Asking for help isn’t a sign of weakness, it takes guts and if that’s not strong, I don’t know what is.

3. Know that you will grow through this. There are always things to be learned. Areas of our hearts and character will deepen and be strengthened through this. Getting stronger and becoming better people is never not painful, but is always a positive thing.

4. Remember that psychological and emotional trauma takes a toll on cognition. EVERYTHING HAS CHANGED. We should not expect our memories to work as well as they did before, nor should we expect ourselves to be able to recall all of the information we had at front of mind before. Go easy on yourself. Lower your expectations for yourself. Do your best.

5. Tend to your emotional health. Check in with yourself. Ask yourself what you need. Write. Pray. Cry. Laugh with friends over Facetime. Grieve if you need to. Rejoice if you want to. Just don’t act like nothing has happened.

6. Manage “The Wait.” I created a few pillars of self-care during “The Wait.” When you have cancer, “The Wait” is the time between your test/treatment/surgery and receiving the results. It’s long, it’s miserable, it’s anxiety-inducing. So we need distractions. For this 2020 Pandemic, the shelter in place orders are our “Wait.” Here are those pillars that I think can get us through:

  • Support: Who can you call/visit with? Make a list.
  • Counseling: There are counselors all over the country doing Facetime sessions, if you are struggling. There are also counseling and meditation apps that are helpful.
  • Movies/TV: Don’t shame yourself for seeking a mental escape. It’s necessary to give your brain a break in times like this. I personally found it comforting to watch shows set in other time periods, or movies I enjoyed from my childhood.
  • Books: Many libraries have an app called Libby where you can check out ebooks and audiobooks if you run out of books in your home.
  • Music: Make a playlist of songs you find uplifting, soothing, or calming. Go to it when you feel overwhelmed.
  • Move Your Body: Many of us can’t do this during or while recovering from treatment, but if you can, go on walks! Do some gentle yoga. Find ways to bring motion to your system and shake off the anxiety. 

7. Grief and Gratefulness: These themes will carry us through this tragic season in our world. Make a list of what you’re grieving and another list of what you’re grateful for. Keep adding to it every day. Eventually, I believe our gratefulness will outweigh our grief. ONE DAY.

How are you surviving quarantine? And if you are in a place that isn’t under “stay at home” orders, how are you managing any COVID-19 related anxiety? Do you have a unique experience with it as a result of your experiences with cervical cancer diagnosis and treatment? If so, please share with Cervivor via the comments below or email [email protected] 

Andrea Bonhiver lives in Minneapolis with her husband and dog. Diagnosed with adenocarcinoma in situ at age 33, Andrea journaled throughout her cervical cancer diagnosis and radical hysterectomy as a way to process her emotions and release her “anger and heartbreak onto a bright white page.”  She decided to share her story and experiences as a book to help others going through cervical cancer know that they are not alone. Her book, The Cervical Cancer Companion, includes personal journal entries through each stage of her experience, prompts to help readers process and record their own journey; practical tools like caregiver calendars, medication trackers and shopping lists; and mantras to keep your mind centered.

Read Andrea’s Cervivor story

A Cervivor Gives Back

When the threat of Coronavirus became very real to the United States and it was clear that PPE (Personal Protective Equipment) for healthcare workers would become nearly impossible to acquire, mine and many others’ first thought was: what can I do to help? It’s no secret to cancer survivors the length our healthcare experts go to to make sure we live. The N95 masks that are meant to be single use are now being used over and over again by workers that are coming in direct contact with COVID-19 patients. This is a very scary time made worse by this fact. One way I learned I could help was by making face masks that could cover the N95 masks, helping to extend their use. It’s by no means ideal, but is the current reality. 

Crafting N95 covers for local medical staff.

I played around with a couple patterns until I found one I liked, and ended up using this one. I still had some elastic left over from scrunchie making with my daughter from the previous summer, and plenty of fabric as well.

I joined a local Facebook community (RVA Masks 4 Health) whose primary mission is to make, donate, and distribute homemade masks to local hospitals and other essential workers in our area. I was gifted 10 more yards of elastic from this community and got to work making about 40 in total, until both my supplies AND sewing machine gave out. Working with my lymphedema therapist turned friend, Laurie Pearman, I was able to get enough donations that we could distribute 100 of them for her hospital system here in Richmond, Virginia. Meanwhile, the Facebook group continues to help each other in the sourcing and donation of materials to local crafters, and for those who can’t sew but wish to help, in delivering the masks to drop off locations. Hundreds of masks are being made daily by these home crafters. There are even members using 3D printers to make masks, face shields and doodads that will hold the elastic off of nurses ears so that it doesn’t break their skin after wearing them for long shifts. 

Completed masks ready for delivery!

It has been comforting to see so many people stand up to help during this crisis. At Cervivor, one of our mantras is #StrongerTogether, and this has been another instance of the truth in that statement. Of course, the best way to help is simply to stay at home if and when possible. I hope all of our Cervivor sisters are staying safe and healthy. You can always reach out to us through our I Am Cervivor Facebook group for our support. 

Mary Baker is a three year survivor of stage 3B cervical cancer. She is an advocate for women’s health, a mom of two, and a proud Cervivor Ambassador and Cervivor School graduate. 

A Message From Our Founder

Cervivor Community, 

We are still in the midst of a global pandemic that has disrupted our daily lives. As we settle into yet another “new normal’, I want to assure you that during this time our community is as resilient as ever. Our leadership is here to support you during this time of physical distancing. Our message to you has been and will continue to be “you are not alone”. 

Our in-person events are on pause for an unforeseen time, but we are more committed than ever to continue sharing our award-winning content and creating special virtual events to keep us all connected and informed. 

You’ll see more and more events that keep us connected while physically distancing. My dining room has become my virtual hub. It’s where I participate in countless Zoom calls, and also where I’ve been sharing meals with my family. Despite this global crisis, I try to find something to be grateful for in each day. Don’t get me wrong, it can be exceptionally hard, but if I look hard enough I find it. In the midst of all of this, I celebrated 19 years of cancer survivorship. I’m grateful for that. I don’t take it for granted at all. Cancer still exists even during a global crisis. That means my promise of making my survivorship count is still at the forefront of my daily work. Because we must still end cervical cancer.

During this time I want to hear from you. I want to know how you are coping with cancer and COVID-19. Let me know how we can support you. Let us know what type of virtual events you’d like to see from our organization. 

This time of isolation can increase anxiety and sleep deprivation. My tips for you during this time:

  • Physically distance yourself, but socially connect
  • If you need to leave your home, protect yourself and others you may encounter
  • Frequently and diligently wash your hands (using the 20 second rule)
  • Stay informed but limit yourself from overwhelming newsfeeds
  • Be diligent in knowing what is credible and what isn’t 
  • Stay hydrated 
  • Move your body aka stretch 
  • Get some Vitamin D — even if it’s just standing outside your residence
  • Enjoy your quarantine snacks but not too much!
  • Contact your doctor and ask for contingency plans for any upcoming visits/treatments
  • Reach out if your emotions get the best of you. “You are NOT alone!” 

Also, if you or someone you know is struggling to find financial resources during COVID-19 for people with cancer, I encourage you to visit this list complied by Cancer.net.

These are just a few reminders to keep you healthy and safe during this time. Remember you are a Cervivor. We’re stronger together — even virtually.

Tamika Felder

19 Year Cervivor

Chief Visionary, Cervivor, Inc. 

Giving Voice to our Young Adult Cervical Cancer Community

During National Adolescent and Young Adult (AYA) Cancer Awareness Week (April 6-10), we want to shine a spotlight on the many young adults who have played such a key part in shaping and supporting our Cervivor community.

AYA Cancer Awareness Week focuses on 15 – 39 year olds who are affected by cancer. As cervical cancer is most frequently diagnosed in women between the ages of 35 and 44, there are many Cervivors in this “young adult” cohort of women, who face unique challenges facing a cancer diagnosis at a time in their lives. 

Let’s give voice to young adults and the isolation they face:

When treatment experience in and out of the hospital can be particularly isolating for young adults. The average age in a (non-pediatric) hospital is 60, and the average age of a cancer diagnosis (across all cancers) is 66. Young adults fighting cancer, and young women fighting cervical cancer,  can find themselves alone with no one their own age to connect with. Then, many have to self-isolate at home as part of treatment due to a weakened immune system. Generally, the top psychosocial issue for young adults battling cancer is social isolation.

For Tamika Felder, the founder of Cervivor, that profound feeling of isolation ultimately led to action:  “I was 25 when I was diagnosed with cervical cancer. I wasn’t married. I had no kids. I was excited to finally be finished with college and living independently and kickstarting my career. I was focused on setting my long-term life goals, and on everything I wanted to achieve. Then, suddenly out of nowhere, I had cancer. My future looked totally different, especially with the loss of my fertility. It felt like a complete loss of myself,” said Tamika.  “I felt totally isolated and alone. I felt at that time that it was an embarrassing and ‘stigmatized’ cancer to talk about.” Feeling totally alone, Tamika started reaching out and building a network of cervical cancer survivors. From that, Cervivor was born.

“I felt very alone during the first year after treatment because I didn’t know any other young adult cancer survivors or cervical cancer survivors,” said Emily Hoffman, who was diagnosed at age 30, shared in her Cervivor story. She speaks about her loneliness and isolation, and the empowerment and support of finding women her own age who had been through what she went through, in her video “Hey Girl.”

Let’s give voice to catastrophe of losing your fertility as a young adult:

“I mourn the ‘normal life’ that cancer ripped away from me,” wrote Sarah Thibodeaux in her blog on Cervivor, Young Adult Cancer Survivorship. Sarah was only 29 years old when she was diagnosed with stage 3 cervical cancer and lost her fertility as a result of her treatments, “Now I am now at an age where a question that I tend to get from people is whether or not I have any children. When I tell them that I don’t, they usually follow up with the question ‘Well, why not?’  It’s in that moment I always have to decide just how in-depth I want to go about my situation, and it can be an awkward experience for both of us.”

“Nobody deserves to lose their chance to have a biological child.  Fertility is a loss so great that it cannot be put into words,” wrote Megan Tanner in her blog Fertility, Family & Cancer. Megan was diagnosed at age 32. “Sometimes, I feel like my body failed me twice (cancer being the first fail), but I have to remind myself it wasn’t me, it wasn’t my body – it was the treatment that did this to me.  The odds were against me, but it wasn’t anyone’s fault, especially my own.”

SPOTLIGHT: Several members of the Cervivor community have joined with other young adult cancer survivors to serve as vocal, active advocates for state and federal coverage of fertility-saving procedures as part of cancer coverage. “Young adult cancer patients have already had to sacrifice a lot to their disease – their chance at future parenthood needs to be valued and protected. We think one of the best ways to do this is by expanding access to fertility preservation, like sperm and egg freezing, through better insurance coverage,” says Joyce Reinecke, Executive Director of the Alliance for Fertility Preservation. 

“Over the last few years, we have worked with other nonprofit organizations and patient advocates across the country to call for this coverage, and we are thrilled to report that ten states have passed laws to protect this option for cancer patients. This has brought coverage to over 30M people who previously did not have this coverage!”

Let’s give voice to financial hardships that young adults face:

 “Being a young adult cancer patient was tough,” shared Morgan in her blog Creating Patient-Provider Synergy. “I turned 26 and I was essentially booted off of my mother’s insurance. I was paying a hefty premium, co-insurance, hotel and gas in order to receive the care I never had before. It became unfeasible and at the time I didn’t know where to turn for resources.”

Let’s give voice to those who share their voice:

Let’s give voice to the many Cervivors who were diagnosed when they were young adults, and who have become shoulders of support and advocates and educators for HPV vaccination, HPV screening and Pap testing. 

Like Cervivor Ambassador Karla in Honduras, who let us know on Facebook that she led a cervical cancer prevention and HPV vaccination information session at her work. Like LaTasha, a Cervivor Ambassador in Florida who was diagnosed at age 32. Like Amy, a Cervivor Ambassador who was diagnosed at age 24 and who now is applying her Cervivor School 2019 advocacy training at home in Australia. Like Tessa, who was first diagnosed at age 28 while in medical school, or Katie and Taylor, who were both diagnosed at age 27. Like so many others.  

Resources:

There are a number of organizations addressing the unique needs and challenges of young adult cancer survivors: Stupid Cancer, the Alliance for Fertility Preservation,  and the Ulman Foundation.

 

Deploying Cancer Coping Strategies During the COVID-19 Crisis

Everyone is experiencing the COVID-19 global health crisis in a different way. 

Healthcare professionals are experiencing the tragedy from the front lines. Working parents are experiencing the hardships of balancing a conference call with a screaming toddler. Women are experiencing childbirth without a partner present to support them. Engaged couples are experiencing the heartache of cancelling “the big day.” Children of elderly parents in nursing homes are experiencing the anxiety of getting the dreaded call their parent has become infected. People are experiencing death, and their loved ones are experiencing the inability to properly mourn them. The experiences go on and on, and they will be forever ingrained in our memories.  

What is not unique to anyone’s experience right now is that we are all feeling elevated levels of anxiety, sadness, and anger due to our inability to know what will happen to ourselves or our loved ones. We lack control. We lack autonomy over our own health as it’s in the hands of others. We lack real social connection and the ability to spend time with who we want, doing things we like to do. 

My husband Matt and I on a walk in the woods to distance ourselves from others and enjoy nature.

And this, is what it’s like to battle cancer.  

For some cancer survivors like myself, this unprecedented crisis has conjured up the same emotions we experienced during our treatment. Emotions that took a really long time to heal from. After finally feeling back in control of my own health, it’s gone. I am confronted once again with the notion that at any minute my health could take a drastic turn and I’m back to the all too familiar feeling of intense vulnerability. Of isolation. Of anxiety. Of sadness. And of anger. The foundation is being rocked again. The foundation I worked so damn hard to build back. 

These emotions extend to my experience as a caretaker. Throughout the ordeal of my husband’s kidney transplant in 2018, I dealt with the terrifying notion that he could be taken from me. And because the transplant medications suppress his immune system, Matt is in the “high risk” category for this virus. His chances of survival are less than most if he contracts it. This has caused us to be overly cautious about bringing the virus into our home. We closed up shop pretty immediately, and jumped into our all too familiar bubble at home; sidelined once again from the world due to health concerns. Soon after, (most of) the rest of the country joined. 

Wednesday night virtual hangouts with my best friends.

And yet, as it was when we were both sick and felt the world crashing down upon us, we are humbled by the fact that others are struggling far more than we are. We are safe. We are (currently) healthy. We have food and shelter. We have each other, and by phone call, text, or virtual hangout, we have an amazing support network. We know we can get through anything. And maybe even enjoy ourselves while doing it. 

You see, caretakers and patients are made of steel. We have already weathered these intense storms, and we continue standing. We know how important self-care is. We know how important it is keep our bodies strong ready to face whatever there is to come. This means eating well, meditating, exercising, whatever it takes. We also have the superpower of being truly vulnerable which allows us to deeply connect with others around us and call them to say “I’m not ok, I just need to cry.” And cry I have. 

My hope is that anyone reading this can also deploy these coping strategies. There is strength in self-care and vulnerability. Believe me.  

My virtual yoga class with my favorite yogi.

To my fellow cancer patients and survivors – I know how scary this is. How unfair is it that our already fragile physical and mental health is being put to the test again? Very. But, remember that we are insanely resilient. We can lead by example here. Don’t forget to breathe, and take care of yourselves. We’ve got this. 

And to all healthcare professionals out there – you continue to be my heroes. Thank you. 

Kate Weissman is an (almost) four year-year Stage 2B cervical cancer survivor and a Cervivor Ambassador serving as an advocate for the cervical cancer community. She also volunteers with the American Cancer Society Cancer Action Network, lobbying for the implementation of cancer-related policies that will help patients and their families, and the Alliance for Proton Therapy Access. She lives in Boston, Massachusetts with her husband Matt and fur baby Giada, and is a proud aunt to five nephews and one niece. She is the Vice President of Integrated Project Management at a Public Relations agency, and an avid food enthusiast.   

Thriving Amid a Crisis

I’m sitting here reflecting and it’s pretty clear to me: I never thought I would be in a world pandemic crisis in my lifetime. That was something we only learned about in history books, right? We’ve become so cutting edge due to advancements in health care technology like testing, vaccinations and medications. I am proving my naivety as we are not bulletproof from everything and we have several issues at stake.

My life is fairly busy and there’s not a lot of dull moments yet I’m sitting here in isolation to protect my immunocompromised body. This COVID-19 virus has proven to be something that has uprooted my life: some positive, some negative. I work as a dental assistant and office manager for two offices. The dental profession has taken a hit due to an aerosol-borne virus.  It has left my coworkers and myself unemployed for the time being.


It’s a strange feeling when you’re used to managing every aspect of every day and you go to completely nothing. I’m here a week into quarantine I catch myself thinking of all the negatives; the uprooting of lives and the health of friends, family, and people I haven’t even met yet and the financial implications this will hold for all of us. The stress on interpersonal relationships, the increase of depression and anxiety, and the general fear of the unknown for our future. I won’t disregard these negatives. It’s the social worker in me. Oh, did I mention I was a part-time master’s student for social work?

My positive thoughts are that I am thankful for a slow down. I now have more time for homework, I get to exercise, spend time with my dog, etc. But even these thoughts have expanded and deepened so much more. Where I have been able to spend more time on homework, I’ve also signed up for auditing a class through Yale (thanks to a friend), I’ve picked up my camera and snapped some photos of the birds visiting the feeder, I dove into my old iPod and listened to music I haven’t heard for a few years, picked up the exercising, cleaned and organized, written creatively and I’ve caught up with old and new friends through chat/Skype/FaceTime.

Most importantly, I have asked myself multiple times, “How can I help?”  Every morning I’ve read constant panic-filled stories on my local Facebook pages and wish I had the means to help everyone. One in particular stood out. The postal service workers needed hand sanitizer.  I knew I had some small travel bottles so I gathered them up, wrote a small note of encouragement and sealed it up in a Ziploc baggy. My dachshund, Sassy, and I walked up and put it in our lock box. The next day we received a nice thank you note attached to our mail. Later on I found a few more travel bottles and did the same thing. Again, we received a nice thank you note.

I’m constantly praying for cardinals to show up and let me know everything is going to be alright. Last weekend I received a beautiful pair of cardinal earrings in the mail from a First Descents bestie, Bethany, and yesterday I received a packet with beautiful cardinal photos and a handwritten note from my friend, Mark. These are the little things I appreciate so much during this time. It makes me miss hugging my friends and family. I’m clinging onto the feeling of the last hug and kiss I received to make the time alone not feel so lonely. 

I also knew I wanted to volunteer some of my time, while I had it, to my favorite organization, Cervivor. We’ve been hit recently with a tremendous loss to our leadership team. I think it’s safe to say that we all need help during this time. Little tasks end up becoming these wonderful projects and I know what I’m doing means a lot to those who need the help. I would highly consider volunteering virtually with your favorite organization as well! I know this too will pass but it is my hope that our society will become reacquainted with humanity and compassion through this all. 

Morgan is a metastatic cervical cancer survivor, Cervivor Ambassador, and the 2018 Cervivor Champion recipient.  She lives in the rural state of Iowa where she continues to advocate tirelessly.  You can find her networking in various communities for cancer prevention in hopes her story can help others.  She was recognized for her advocacy completed in 2019 with the Iowa American Cancer Society Action Network.  Morgan continues to advocate along side Above and Beyond Cancer, Bras for the Cause – Madison County, the Iowa Cancer Consortium, Iowa Department of Public Health, and Des Moines University.

During Women’s History Month, Let’s Celebrate an Unsung Heroine in Cervical Cancer Prevention

March celebrates Women’s History Month! Let’s use this opportunity to recognize an unsung heroine in cervical cancer prevention: Mary Papanicolaou (1890-1982), the wife of Pap smear inventor Dr. George Papanicolaou.

In the mid-1910s, Dr. Papanicolaou was conducting research at Cornell, but because he himself was not a clinician, he lacked access to human patients – except one: his wife. For years, Mary volunteered as an experimental subject for her husband, climbing up on to his examination couch nearly daily so that he could sample her vaginal fluids and cervical cells, which he would smear on a glass slide and examine them under a microscope. It is reported that Mary held gatherings for female friends who agreed to have their cervixes sampled, providing additional subjects for her husband’s research.  

After one of these women was later diagnosed with cervical cancer, Dr. Papanicolaou was able to determine that cancerous and precancerous cells were visible on the samples. In 1928, he presented these findings at a medical conference, kickstarting the research and refinement that ultimately led to the Pap smear test. With Mary’s willingness to have her cervix sampled daily (for years!) she lay the foundation for the invention of the Pap test and ultimately, for the HPV test and HPV vaccine. Thanks to Mary and her husband, cervical cancer can be detected early, cervical cancer mortality rates have plummeted and thousands of lives are saved each year. Mary Papanicolaou, we celebrate you!

What Was Viral Before the Internet? HPV.

Today (March 4) is International HPV Awareness Day. Join fellow advocates and educators worldwide today in a social media campaign to destigmatize HPV and remind people that HPV was “viral before the Internet.”  

What do cat videos,  double rainbows, sneezing pandas and dancing sharks have in common with HPV? They are all “viral.” For this International HPV Awareness Day, our friends at the International Papillomavirus Society have developed an engaging suite of shareable graphics and videos that play to people’s love of memes and viral videos, and uses that to focus attention on HPV.

Cervivors, Let’s Layer in Cervical Cancer Prevention Messages!
The International HPV Awareness Day campaign elements are focused on HPV’s link to cancer generally, but not at all on cervical cancer. As a community of Cervivors, let’s take advantage of this opportunity to help these campaign elements “go viral” while layering in our cervical cancer education and calls to action for prevention (vaccination, HPV & Pap testing, annual well-check visits). Let’s enhance the conversations about HPV today on International HPV Awareness Day, and every day until the virus is destigmatized, HPV vaccination is broadly implemented and cervical cancer is eliminated!

Let’s Stop Fake News About The HPV Vaccine!

We in the Cervivor community understand and appreciate that the human papillomavirus (HPV) vaccine is a cancer vaccine. The word’s first cancer vaccine, in fact. We understand that it can save lives. Yet, misconceptions and “fake news” about the HPV vaccine persist. The myths and misconceptions have obscured the importance of the vaccine for cancer prevention – for both men and women. 

The more parents who take their children to get vaccinated, the broader the adoption across the population, the closer we will get to our goal of ending cervical cancer – as well as other cancers related to HPV, including penile, anal, vaginal, vulvar and throat cancers. 

MYTH 1: HPV vaccination is not safe.

FACT: The HPV vaccine is safe and doesn’t contribute to any serious health issues. The vaccine itself has been researched for many years (including 10+ years of research before it could even be used in humans) and has been approved by the Food and Drug Administration since 2006. Similarly, the Global Advisory Committee on Vaccine Safety of the World Health Organization annually reviews all published and emerging data about the vaccines in real-world use and has, year after year, declared HPV vaccines safe for use.

MYTH 2: The HPV vaccine has side effects. 

FACT: The HPV vaccine has the same potential side effects as any other vaccine: pain or redness at injection site, nausea, and headaches – all of which are temporary. These are minor effects or drawbacks especially when compared to all of the benefits you gain from the vaccine in the long run: protection against HPV-related cancers.  Rarely, an allergic reaction to a vaccine component or ingredient can occur – but that is true of all vaccines and medicines. All people are monitored for 15 minutes after having the vaccine. If an allergic reaction does occur, it can be treated quickly – as immunization providers are trained to deal with such a reaction. Again, this can happen with ANY vaccine and is not specific to the HPV vaccine. 

MYTH 3: Only girls need to get the HPV vaccine; boys don’t need it. 

FACT: HPV vaccines are approved by the U.S. Food and Drug Administration for males and females ages 9 to 45. HPV affects both men and women. In men, HPV can cause penile, anal and oral cancer. In women, HPV is not only the cause of cervical cancer, but is also associated with some vaginal, vulvar, anal and throat cancers. The HPV vaccine can protect against these cancers, as well as protect against genital warts (which are also associated with HPV). So the vaccine truly can help both sexes. Overall, the vaccine will have quicker, greater impact and protect more people if both girls and boys get vaccinated. The ideal time to vaccinate is in the tween and early teen years. Research shows that younger people create more antibodies to the vaccine than those aged in their late teens. (This is why those aged 14 and under usually only need two doses instead of the three doses administered to adults.)

MYTH 4: Since the HPV vaccine is not required in every state, it’s really not important.

FACT: While the HPV vaccine is not mandatory in some states, this could soon be changing. More and more states are now requiring that kids be immunized. Many have programs to fund HPV vaccination, even if it is not a state requirement. Regardless of whether or not a state has laws or regulations about the HPV vaccine put in place, it is still a highly important cancer vaccine for children to receive. HPV causes virtually all cases of cervical cancer, as is also associated with vulvar, vaginal cancers, penile cancers, anal and oral cancers. Vaccinating tweens and teens against HPV is a major step to help protect them from these deadly cancers.

MYTH 5: Getting the HPV vaccine will encourage adolescents to be more sexually promiscuous.

FACT: Research has shown that there is no evidence that boys and girls who receive the vaccine have sex earlier than those who don’t have the vaccine. Nor do they have more sexual partners once they became sexually active. No research links the HPV vaccine to increases in sexual activity. 

MYTH 6: Only sexually active people need protection against HPV. 

FACT: The vaccine is most effective when administered to individuals who have not been exposed to HPV. Thus, giving the vaccine to tweens and teenagers before they become sexually active, offers the best protection. However, the vaccine is recommended in individuals who are sexually active as well. The HPV vaccine is approved by the FDA to be given to males and females as early as age 9 and up to age 45

MYTH 7: You got the HPV vaccine, so you can skip your Pap test.

FACT: Women who have been vaccinated against HPV should still keep up with cervical cancer screenings. As with any vaccine, the HPV vaccine may not fully protect everyone who is vaccinated and does not protect against all HPV types. Nor can the vaccine help clear an HPV infection that is existing in the cervix at time of administration. While the frequency of Pap testing can be extended for women who have been vaccinated because of the protection afforded by the vaccine, annual health visits should be continued together with the many other important health checks that occur at those visits. 

Resources to Share

The American Cancer Society has several downloadable, printable graphics and handouts focused specifically on HPV vaccination.


Tale of Two Ostomies

As cervical cancer survivors, our bodies undergo very traumatic changes. Chemotherapies. Radiation therapies. Hysterectomies. Biopsies. We also live with lasting side effects that continue to wreak havoc on our bodies and emotional well-being. 

Ten months after my cervical cancer diagnosis and radical hysterectomy, I faced an unfamiliar surgery — a pelvic exenteration. At this point, I didn’t feel like I had a choice. My cancer had metastasized and this was my only option. The choice was made for me.

A pelvic exenteration is the removal of the vagina (I opted for no vaginal reconstruction), bladder, urethra, rectum and part of the colon. I was left with a colostomy (I call Ethel) and a urostomy (I call Fred).

What is an ostomy?

Colostomy = An opening in the abdominal wall in which the end of the colon is brought through the opening to form a stoma. The stoma looks like the lining of your cheek. Unlike the anus, the stoma does not have a shut-off muscle so I cannot control when I go (or the sounds that emit from my stoma – and yes, it farts).

Urostomy (Ileal conduit) = Uses a section of the bowel, surgically removed from the digestive tract and repositioned to serve as a conduit for urine from the ureters to a stoma. One end of the conduit attaches to the ureters and the other end, in my case, to the second stoma.

I have bags that attach to appliances (adhesive patches with plastic ring openings) that collect my waste. In the ostomy world, I am a ‘double bagger’.

Getting used to foreign objects attached to your body where waste pours out of is challenging to say the least. It was downright overwhelming at first. I cried every time I had to change my appliances and bags, which was every other day in the beginning. I felt helpless and angry. But as I physically healed things started getting easier and my frustration level decreased. I learned the best time for changing my bags, I learned what foods did and didn’t work with my ostomies and I learned there’s a whole online community for ostomy support and care. 

I also decided that since I was still here I wasn’t going to let my ostomies or my cancer dictate how I was going to live my life. I slowly went back to doing the things I always loved: hiking, swimming, traveling and Jazzercising. Taking back parts of my life was empowering and I felt strong again. Being able to still be me, to do the things that made me feel “normal”, helped me accept my changed body.

Most days my ostomies are unremarkable, just another body part. But I am keenly aware that my cervical cancer took away parts that gave me my womanhood and that I now redefine what it means to be a woman, a true Cervivor and someone who lives for more sunny days.

There are other women in our Cervivor community who are living and thriving with ostomies. If you are facing an ostomy surgery please know that you are not alone and that you have resources. We are here for you. 

Carol is our Lead Cervivor Ambassador and manages our Cervivor Meet Up program. She lives in Northern California where she raised two amazing kids and hikes with her husband and their fur baby Ace. Carol & Cervivor have put together a helpful guide for those undergoing ostomy surgery. Click here to view.

2019 Cervivor Champion Maria Franklin infuses her work with passion & fun

Cervical cancer survivor Maria Franklin, recipient of the 2019 Cervivor Champion Award, is BUSY – during Cervical Cancer Awareness Month, and all year long!

She embodies everything Cervivor and the “Cervivor Spark” stands for. Informed. Empowered. Alive.

“Ending cervical cancer is my job, It’s OUR job. We have to do it because we have to honor what we went through, and also because of the people we have lost.”

She mentors other cervical cancer survivors. She hosts MeetUps. She fundraises – via social media, in her community, wherever and whenever she can. She runs the Cervivor Español Facebook group. She helped organize and co-facilitate a Spanish-language Cervivor School in Puerto Rico. She leads initiatives to help ensure that cervical cancer screening, vaccination and prevention messages reach the Latina community in the U.S., and in Central and South America.

Maria, and fellow Latina Cervivor Karla

She even used her birthday as an opportunity for education and fundraising by creating a campaign and rallying her friends to “Help celebrate my 48th birthday by joining me in walking, running or cycling a total of 48 miles during the month of October!” #48MilesToEndCervicalCancer

She embodies support and advocacy. She brings her passion to everything she does. She is making her survivorship count, day in and day out. Mobilizing. Advocating. Educating.

Initially diagnosed with cervical cancer in 1999, Maria is a 20+ year survivor who started advocating for cervical cancer prevention and helping to forge a cervical cancer community of women “before there was social media” and before there was Cervivor. She has never slowed down.

Maria has a particularly busy January planned to support and harness Cervical Cancer Awareness Month in her home state of Wisconsin. She’s planned:

  • A “proclamation” from the Governor’s office to officially recognize the importance of January as Cervical Cancer Awareness Month in Wisconsin.
  • Interviews with Telemundo Wisconsin and radio stations in Puerto Rico to talk about cervical cancer awareness and prevention
  • “Teal & White Days” at work
  • A patient reception for Cervical Cancer Awareness Month, in partnership with a local  gynecologic oncology clinic
  • A Cervivor MeetUp to connect in-person with women in her community who are battling cervical cancer or dealing with the after-effects

“Every single one of us has to do our part. We have to do our part so we can make this a reality for the next generation. Nobody else should have to go through what we went through,” says Maria.

What is your part? What are you doing over CCAM in your local community?

Let us know in the comments below. We’d love to feature you and your work on our blog, if you are interested!

Watch Maria’s powerful Cervivor Champion Award acceptance speech at the 2019 Cervivor School awards ceremony, or read her remarks below.

Maria’s Award Acceptance Speech:

I truly believe in Cervivor. I truly believe in what we do here. I know we can end cervical cancer. This is why we are here. Every single one of us has to do our part. We have to do our part so we can make this a reality for the next generation. Nobody else should have to go through what we went through.

The story is different for every single one of us. It wasn’t easy for any of us. No one else should have to go through what we went through. So we are here today to take this responsibility seriously. Because ending cervical cancer is our job. We have to do it because we have to honor what we went through, and also because of the people we have lost.

Today when you leave here [Cervivor School], you start your work and you start your mission. And if and when you’re feeling you may be a little burnt out, you reach out to one of us and we will help you. We will support you. Because we need to do this for the next generation!

Thanks, Maria, for all that you do for Cervivor, for women today and for the next generation who  – with your help – may live in a world free from cervical cancer.

Maria Franklin is a 20-year cervical cancer survivor who heads Cervivor’s Latina advocacy efforts.

Read her original Cervivor story and her blog post reflecting on 21 years post-cancer.

Watch her story and advice on Cervivor TV.

“Make Cancer Pay” Video Shows the Fiery Passion to Fight Back

The badass, fired-up Cervivor in our video, “Raising Hell To Make Cancer Pay,” is Mary Baker, who is “pissed off” at what cancer has done to her body, her family, and her friends.

Cervivor Ambassador Mary Baker

“I’m pissed off that four of the women that I saw last year [at Cervivor School] are now dead” from cervical cancer.

Mary’s solution to being pissed off? “RAISE HELL.”

Watch her video here.  

We had a chance to chat with Mary about her experiences, and what it means to “raise hell” as a Cervivor Ambassador in her hometown of Richmond, Va. and advocate for cervical cancer prevention.

Q: From the video, you really are fired up by a “Cervivor Spark” to share your story and drive change. Can you tell us what led to this fiery passion and fighting spirit we see in the video?

I had started experiencing odd symptoms that I knew weren’t normal. I kept listening to my body and going to doctors, but it took me going to four doctors over two years until one finally took me seriously and did more advanced evaluations. By that time, I had stage 3B cancer. One of my healthcare providers had told me again and again that it was “just hormones.” Another made some sort of offhanded comment that I should just focus on having babies – although I already had two children and I wasn’t there to ask about fertility! I kept getting misdiagnosed because, even though I knew there was something “off” with my body, I wasn’t being heard and my concerns were not being addressed. 

Women need to listen to their bodies, but that is not enough if the medical community does not take us seriously and listen to our concerns. The worst part is, from my connection to other Cervivors, I now know that I am not the only one to have had months or years of misdiagnosis. This is an experience that has frustratingly been shared by many of us! I’m pissed off about that!

Q: Being “pissed off” is an emotion that many of us share. How do you deal with feeling “pissed off” about these issues?

In all honestly, it is only now –  a few years after my June 2016 diagnosis – that I am delving into the anger and frustration and using it as a force for fighting back, as a force for advocacy and change.

When I was going through treatment and recovery and settling into my new post-cancer life, I had to protect my peace and choose gratitude over anger. At the time, that was better for me and for my recovery. That was better for me and my family.

For a long time after I went through my treatment, I was in a bit of a fog. I was trying to to re-figure out who I was at that point, post-cancer. I couldn’t think about my anger at that point. The anger didn’t serve me for where I was.

Making Cancer Pay tees available at Cervivor.org/shop

Now 3+ years after cancer, I’ve decided that I can choose both. I can feel gratitude for being on the other side of the disease and being here today, yet still feel angry. What happened to me wasn’t okay and it shouldn’t happen to anyone else. I’m mad that misdiagnosis and having symptoms ignored has happened to so many other women. Worse is that I keep losing friend after friend to cervical cancer. THIS PISSES ME OFF.  Now it serves me best to do something about it!

Q: How do you plan to “raise hell”?

Mary and Dr. Sarah Temkin lobbing on Capital Hill

Thanks to Cervivor and the training I’ve benefitted from at Cervivor School, I have a lot of options on how to raise hell. First and foremost, I’ll raise hell by telling my story to anyone and everyone.  I’ve shared my story with members of the U.S. Congress in Washington, D.C. as part of Capital Hill lobbying days.

I sit on the Virginia Immunization Taskforce. I am a district lead in Virginia for the American Cancer Society’s Cancer Action Network. I recently wrote an article about my experiences for HealthyWomen.org so that I could reach many more thousands, maybe even millions, of women.

I’m unstoppable now in telling my story, as I know my voice matters. That all of our voices matter. We cannot be silent. Our voice must be heard. That is how change is made!

The American Cancer Society Cancer Action Network (Richmond, VA)

Q: How do you want other individuals and Cervivor as a group to “raise hell”?

To all women I say, listen to your body. Speak up and speak out. If a doctor’s diagnosis doesn’t feel right, keep asking and keep pressing. I wish I had done that when I was told my symptoms were “just hormones.”  If your doctor doesn’t take your concerns seriously, find one who will.

For fellow Cervivors, tell your story. Share it as many times as possible. Don’t keep it to yourself. You may think your voice doesn’t matter, but it does! Realize that you matter, that your story matters. Speak your truth.

Cervivor School 2018
Cape Cod, MA

If you want more training on advocacy, take advantage of Cervivor School. Plug into the learning and mentorship of other Cervivors. We are here to support each other in dealing with cervical cancer, and we are also here to support each other in our advocacy…and in our anger. If you want to join me in raising hell, reach out to me and plug into Cervivor!

About Mary

Mary is a 3+ year cervical cancer survivor, Cervivor School graduate and Cervivor Ambassador. Read her Cervivor story and her HealthWomen.org article “I Was Told My Irregular Vaginal Bleeding Was Normal, But I Actually Had Cervical Cancer.”

“Hey Girl” Video Highlights the Importance of Support

Cervical Cancer Awareness Month (CCAM) is very much about advocacy, education and outreach. It’s about making our voices heard and about not allowing cervical cancer – and the toll that it takes – to be invisible or stigmatized. This is very much is the mission of Cervivor. Yet, there is also a quieter yet equally as important mission: to be here for each other, to be a support, a shoulder to cry on, an experience-sharer, and a place to go for connection with someone who has been in the same place, fighting the same disease. 

Emily and Cervivor Founder, Tamika Felder

Cervivor’s video “Hey Girl” highlights the lifeline that the Cervivor community has been for so many. 

“To the girl who’s just been diagnosed with cervical cancer, I want to say, ‘Hey girl – I’ve been there too.’ I understand what you’re going through. Your mind is spinning, you’re confused. I just want you to know that you are not alone,” says pink-haired Iowa-based Cervivor Ambassador Emily Hoffman to the camera, kicking off the video.

Emily shares some of her experiences with Cervivor support and connection below:

Q: How did you plug into the support network of Cervivor? What does it mean to you?

It’s funny that I’m in a video that will be shared across social media, as I am not active on social media at all. I don’t use Facebook or Instagram or Twitter. I also wasn’t active on it back when I was diagnosed with cervical cancer in 2013 at age 30. I’d gone through diagnosis and treatment alone, without a supportive community to connect with, share with or learn from. I didn’t know that I needed it. I didn’t realize how alone the disease had made me, and how alone I had made myself. 

I first found the Cervivor website in early 2014 a few months after my treatment ended, and I spent the next 24 hours on it! At the time, I was experiencing so many side effects from my radiation. On Cervivor.org, I finally found ‘my ladies, my community.'” I read every story, every page of the site. I clicked on the link to CervivorTV on YouTube and I watched every episode. I literally stayed up all night.  That was the first time I’d found other young adults with cervical cancer. The website became my lifeline! The website became my connection to other young women who had been where I’d been and had gone through – and were going through – the same thing I was. I no longer felt alone.

Through Cervivor events and events like CancerCon, I met others in the Cervivor community. The people whose stories I’d benefited from online became real to me. They put me in touch with other cervical cancer survivors. Suddenly, I had women just like me to talk to, to call, email, and text. 

Cervivor School 2019, Chicago

Today, six years later, I am a Cervivor School graduate and a Cervivor Ambassador. I’m still not on social media, but I’m connected in so many other ways. If I have a worry or frustration or scare – I have people – via email, text, phone and in person – to reach out to who ‘get it.’

Q: How did you come to be the face of the “Hey Girl” video?

One of the activities I participated in at the 2019 Cervivor School was to write a letter to a woman who was newly diagnosed with cervical cancer. I guess my letter moved people, because the next thing I knew, I was asked to record and film it! 

Because we were writing to an anonymous woman, I struggled with how to start the letter…so I sort of naturally landed on “Hey girl” as a greeting, because it felt informal, friendly and inviting. Little did I know that “Hey girl” is actually a popular internet meme – which people told me later – that features Hollywood heartthrob Ryan Gosling saying all sorts of romantic stuff. Maybe that’s why my letter got such a good response, without me even trying.

While people have shown me the Ryan Gosling memes (they really are quite funny!), my own “Hey girl” message is no joke. It’s true, personal and heartfelt. Women need to know that they are not alone. Women undergoing diagnosis and treatment – and the after effects of treatment – need to know that there is a whole community of women – a whole organization of Cervivors – here to support them.

Q: Six years after your cancer diagnosis, how do you plug into the Cervivor network of support today?

I take great comfort in knowing my Cervivor community is here for me. I have the phone numbers of many of the women I’ve connected with, that I carry with me wherever I go, for whenever I may need them. For example, when I come out of an oncology follow-up appointment, I know who to text. In fact, recently my doctor said something not bad, but not particularly comforting – something I wasn’t exactly sure how to interpret despite my questions. It sent me spiraling. So I sent a text out and I got responses back in two minutes. That’s all I needed. They heard me, they got it. They put me at ease in a way no one else could at that moment. In this community, we can always be unfiltered and  never need to worry about judgement.

Now, being active in the Cervivor community gives me a sense of purpose as a cancer survivor. It enables me to use my experience to make a difference to other survivors. This video will make a difference!

About Emily

Emily is a 6+ year cervical cancer survivor and Cervivor Ambassador who is also involved with the Iowa Cancer Consortium and Iowa Department of Public Health on cervical cancer prevention initiatives. Read her Cervivor story.

Our Resolutions To Ourselves As Cancer Survivors

Throughout Cervical Cancer Awareness Month, we focus on outreach and educating others. But in this time of new year’s resolutions and new beginnings, let’s not forget about ourselves. A few resolutions for life beyond cancer include: 

  • No longer sweat the small stuff. We know just how short life can be. Therefore, let’s not waste time on things (or people!) that really don’t matter, or build us up.
  • Cherish the people who really matter to you.  Our time is precious. Choose to spend it with people who matter.
  • Love the skin you’re in. We may all yearn for our lives before cancer. But the truth, following our experiences, we are no longer that person. Embrace the new you. It just might surprise you!
  • Try to leave fear behind: Those of us who are still here are blessed to be alive, no matter the physical or emotional limitations. We may be plagued by fear of re-occurrence, occasionally or continually. But it’s important to keep that in check and  live… like never before.
  • Enjoy life. Give yourself permission to enjoy, relax, and to rest and reset. 
  • Be adventurous. Do things that scare the crap out of you. Why? Because they remind you that you’re still here.
  • Spend time outdoors for physical and mental health. Whether you want to exercise, find a quiet space to sit, or even just picnic outside with friends, the outdoors is a great space to be in the moment, find beauty in the world and forget about responsibilities that may induce stress.
Survivors keeping one another motivated and challenged! They understand!
  • Make “healthy” fun: Find ways to make your health goals also fun goals. For example, schedule walks with friends instead of lunches or dinners. At Cervivor, we offer the “Survivor Slimdown” – a Facebook community focused on health and weight loss that is both supportive, motivating and fun.
  • Plug in to your community: Don’t be afraid to lean on friends, family and ask for the specific help you may need. The clearer we can be articulating the type of support we may need, the better our support will be. And of course, plug into Cervivor wherever and whenever you need us. We are here for you!

May we all have a happy, productive, fulfilling and healthy 2020!

For more tips on living your best life during and beyond cancer, check out Cervivor Founder, Tamika Felder‘s book, “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” 

#RememberingErica: Why I Keep Fighting and Never Give Up

She’s gone. 

I knew those two words were coming. I’d known for weeks. But when the text message arrived from Erica’s husband, JR, I wasn’t prepared at all. 

All the special bonding moments we’d shared came flooding through me, as well as grief for all the moments we now wouldn’t get to share. As much as Erica had prepared us for “this” — we weren’t really prepared at all. 

I first met Erica in September 2015 when she attended her first Cervivor School. She wasn’t on the other side of her cancer; she was in the middle of it. Fighting it. In the days leading up to Cervivor School, she hadn’t been feeling well and probably shouldn’t have flown from Indianapolis to San Diego. But she powered through. She showed up every single day of Cervivor School. 

By 2016, she’d attended four Cervivor Schools – to not only keep honing her own advocacy and story-sharing skills, but to serve as a mentor to other Cervivors. She became our Lead Cervivor Ambassador. She became one of the faces of our organization. She became one of our most dedicated patient advocates. And, she became a friend who made a powerful mark on me in the brief time I knew her. She showed me what energy and passion was, even in the face of the worst kind of adversity that cancer can throw you.

Today, December 27th, marks the one year anniversary since the death of Erica Frazier Strum.

Death. 

Erica fought cervical cancer not once, not twice, but three times until it finally took her from us. Yet, even when the diagnosis was clear that the cancer was terminal, she educated and advocated. From her hospital bed and then from her hospice bed, Erica was still telling her story when she could barely move, barely talk.

She understood what it meant to be a Cervivor ambassador – to share, to post, to blog, to record, and to make sure that realities and ravages of cervical cancer could not be ignored. She shared on social media from her hospital bed. She came to our Cervivor Schools between hospitalizations to teach us the importance of never giving up the fight. She shared her story in as many places as possible, lobbying in her home state of Indiana and in Washington, D.C. and advocating for screening, prevention, and more treatment options for metastatic cervical cancer. Amid these activities, she authored a moving children’s book, “Living Life with Mommy’s Cancer,” with her son Wylee to help other families confronting cancer. 

She made her survivorship count. 

Erica received the Indiana Cancer Consortium Survivorship Award and the Indiana Immunization Coalition HPV Champion Award. She was also an advocacy volunteer with the American Cancer Society Cancer Action Network. This was a woman who lived her life fully, even while dying. Even while she knew she was going to die. 

Erica wasn’t just a fellow Cervivor. She was my friend. 

Erica let me glimpse into her life in the most personal of ways. She let me film her as she was getting treatment, and then as she was dying, for a documentary about cervical cancer that I am making. She let me film her in some of her worst, scariest moments. She knew how important it was to share and show and tell.

Cervical cancer is not an easy cancer. 

I’m still in the process of making the documentary, and every time I watch and edit footage of my time with Erica, I’m moved to tears. I’m struck with pain. I’m flush with anger. We keep working to prevent cervical cancer, but my friends keep dying! Even as I’m filming my call-to-action documentary, I sometimes drift to a dark place of wondering, should I just give up?

Erica is one of the reasons why I can’t and won’t abandon this work. Even when I’m tired. Even when I have my own health issues, or another cancer scare (it wasn’t). Even when yet another  Cervivor friend dies from cervical cancer. Even when I crawl into bed sobbing, pull the covers over my head, and wonder, what is the point?

Erica is the point. And the 4,000+ other women in America who die each year from cervical cancer. And the 270,000+ women around the world who die each year from this disease. THEY ARE THE POINT. 

Women are still dying of cervical cancer despite all the advancements that have been made. Through our work, we can prevent cancer in future generations. Even from her hospital bed and hospice bed and literal death bed, Erica tackled that work. She recognized the importance of looking ahead, fighting the fight so that we can stop cervical cancer in its tracks.  

Erica Inspires Our Call to Action

I know if Erica were here today, she’d be working with me to finalize our plans for Cervical Cancer Awareness Month (CCAM) in January. I just know she’d ask. “Are we doing enough?” 

In her book, Erica gave a personal acknowledgement to me for empowering her to share her story. But it is she that I owe a debt of gratitude to, for inspiring me to keep up the fight.

She is my call-to-action. She, and everyone who has lost their lives to this disease, is our catalyst for ongoing advocacy. Her commitment to the mission to end cervical cancer was the inspiration behind my creation of the Cervivor Legacy Award, in her honor.

She lives on in my work. 

She lives on in our work. 

With Cervivor, she lives on. 

Let’s honor her – and all women who have lost their lives to cervical cancer – by stepping up our education and outreach this January for CCAM. Let’s turn this day, December 27th – the anniversary of her death, into a day of action, preparation and commitment to our shared mission. Erica wouldn’t want it any other way. 

Tamika Felder is an 18-year cervical cancer survivor and award-winning women’s health advocate. She is the Chief Visionary at Cervivor – a nonprofit dedicated to cervical cancer advocacy and support. Named a “Cancer Rebel” by Newsweek in a 2017 cover story, Tamika is a highly sought-after speaker on cervical cancer advocacy, cancer prevention, HPV education, and living life with purpose after cancer. She is the author of “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” Tamika currently serves on the steering committee of the National HPV Vaccination Roundtable. She’s also shared her story and experiences on Presidential Cancer Panels convened by the White House. An award-winning television producer, Tamika is currently filming a documentary about cervical cancer, the women living with it, and the vaccine to prevent it.  Her story of patient-to-advocate / survivor-to-Cervivor inspires and mentors not only patients and medical communities, but anyone who has struggled with obstacles in their life.

The ER diagnosed my pain as sciatica instead of advanced cervical cancer

My cervical cancer story started in my 40s. I’d been a single mother to three amazing children. They’d all grown up and I had started taking better care of myself and my health. For many years, I admit, I didn’t do my annual check-ups and Pap smear. I didn’t have insurance, but I also did not make time. I didn’t understand the importance of annual exams. I didn’t know what I was up against.

Tracy at Cervivor School 2019 in Chicago

When I turned 45, I started noticing that my periods were different. I was having pain during intercourse. My lower back and the backs of my legs hurt constantly. I still didn’t have health insurance, so I didn’t go to the doctor. I thought my back hurt because I was trying to get healthier and doing more exercise. I lived with the pain for a while until I finally decided to go to the ER when the pain became worse.  

At the hospital, I was told my pain was a “sciatic nerve” to be treated with ice and heat. They didn’t do a pelvic exam or ask about my reproductive health history or anything about that part of my body. They just assumed they knew what was wrong, and they sent me home.

(I guess they didn’t know what I know now:  that low back pain and pelvic pain can be linked to problems with reproductive organs such as the cervix. That a sign of cervical cancer is pelvic pain – especially continuous pain, like the type I had.)

The pain went on for months. Then a day before my 46th birthday,  I was going to the bathroom and something came out that was not normal – it was what looked to be a piece of flesh, from inside me. I knew right then something was wrong.  The day after my 46th birthday, I went back to the ER. This time, they took me in for a CAT scan. After the scan, the ER doctor came in the room and handed me a card. He told me they saw a mass and that I needed to contact the doctor on the card ASAP. 

I left the hospital crying, confused and scared. I was able to get an appointment for the following day. That doctor found an 8 cm tumor on my cervix. She told me right then, “I am sorry to tell you but you have cervical cancer.”

I did not know what to say or think. I burst out into tears. I knew my life had changed forever. I didn’t know what HPV or cervical cancer was. I was scared I was going to die.

My next six months were all treatment, a lot of it: 28 rounds of radiation, 6 rounds of chemo and 4 rounds of internal radiation also known as brachytherapy – a procedure that involves placing radioactive material inside your body.

The good news: in August 2017, I was told I was cancer free! 

Today I want to teach everyone about HPV, cervical cancer and the other cancers that HPV can cause. I want to encourage all parents of boys and girls to make sure their kids get the HPV vaccine. I want to educate women of all ages to keep up with their annual gyn exams.

I also want to make sure that women and doctors know about the connection between lower back pain and pelvic pain to cervical cancer. While of course back pain and pelvic pain can be caused by many different reasons, it is important to at least be aware of the connection and ask questions. I wish the doctors in the ER had asked me before diagnosing me with sciatic nerve pain. I wish I knew to ask questions myself and to mention my irregular bleeding and pain during sex, even though I was at the ER for “back pain.” Cervical cancer is not something I want anyone else to go through. I am going to work hard for the rest of my life to spread the word and end the stigma.

Tracy Jimenez  is a 2-year cervical cancer survivor from Colorado who recently attended the 2019 Cervivor School, where she learned “that cancer will not stop me and that I will be a voice to educate others. I am a fighter and Cervivor School showed me no one is alone in this fight.”

Read Tracy’s full Cervivor story

Thanksgiving with a Side of Gratitude (or Not)

Thanksgiving is a big meal, and the main course of the holiday is gratitude.

Cervivor is a place to get real. So let’s put this on our holiday table: is gratitude easy or tough for you? As cancer survivors, can we confess that we sometimes have a tricky on-again off-again relationship with gratitude? If you’ve just received a diagnosis, gratitude is the last thing on your mind. It wasn’t on my mind in the chemotherapy chair.

As a survivor, I am epically, hugely, ginormously (seriously!) grateful for every day that I have. But that is mixed, still – 18 years later – with the feelings about my lost fertility and, on a bad day, frustration about my ongoing health battles with the after-effects of cancer.

The reassuring part is, I know I’m not alone. I just need to turn to Cervivor Stories and the Cervivor blog to know that others are riding with me on the emotional rollercoaster of the holiday season. I’m feeling grateful to the Cervivors who wrote so honestly about their own gratitude struggles. Thank you for keeping it real. And honest.

 “I wasn’t in a spirit for any holiday after receiving my diagnosis. Everything had gone dark. That year there was no giving thanks on Thanksgiving, no tree for Christmas. What was the sense of doing all that if I felt uncertain about my life? It took a while for me to feel ready to fight back. It was a difficult journey, but I got a second shot at life. Now, I give thanks every day as if it were Thanksgiving Day. I celebrate each day and see it as a gift given to me like a Christmas present. There’s so much I want to do, and I don’t take anything for granted. I see life differently now. Problems that seemed huge are not so big anymore. I really don’t sweat the small stuff.”  – Patti

“It’s perfectly normal after cancer to have feelings of depression and anxiety. However, once we acknowledge them, we get to CHOOSE what to do with them… Since cancer, I choose to live in a different state of mind. Cancer brings you face to face with mortality, death, and time. Once I began to digest my mortality, it changed my mindset toward every single thing.

I no longer look at the holiday season with the same weight and importance as when I was a child. I still love them, and Christmas is STILL my favorite. But I live with much more intention and purpose now. Every day is Christmas because for me it’s a state of mind that I choose.  New Years’ Eve brings hope and excitement, but I am just as excited about the next 365 days of opportunity and growth.  This shift isn’t something that just happens. For me, it takes a bit of work.” – Holly

“It’s hard to feel grateful when you are nauseous, exhausted, depleted, and in pain.  That’s ok!  I would go into a cycle of feeling depressed, and then get mad at myself for not being more thankful that I would make it out of this alive. My boyfriend would constantly tell me, “You’re ‘should-ing’ on yourself again.” 

Going through cancer is hard enough, and the side effects both during and after treatment are draining (to put it mildly).  We should at least be able to give ourselves a break… People write inspirational and positive blogs to give others strength and hope, and to advocate for change, and all of that is useful and wonderful.  But sometimes it is nice to hear that people are struggling with the same crappy emotions that you are. We all have those moments of sheer frustration and anger and complete debilitating sadness over the hand we have been dealt, and that is ok too.” – Ana

“This past year has been a process.  A process of grief, depression, anxiety, anger and many tears, as well as gratitude, blessings and opportunity.” – Megan

“I had so much unresolved grief and unanswered questions. Cervivor help me settle some things within myself and fulfill the need I have for service to honor my mom. I am so thankful that Cervivor has once made me believe that I can go on. I can go on and help fight cervical cancer.” – Lillian

Do these reflections resonate with you?

What are you grateful for, and what are your gratitude struggles?

Please share in the comments below. We are here to listen and we are here to support you.

Tamika Felder is an 18-year cervical cancer survivor and award-winning women’s health advocate. She is the Chief Visionary at Cervivor – a nonprofit dedicated to cervical cancer advocacy and support. Named a “Cancer Rebel” by Newsweek in a 2017 cover story, Tamika is a highly sought-after speaker on cervical cancer advocacy, cancer prevention, HPV education, and living life with purpose after cancer. She is the author of “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” Tamika currently serves on the steering committee of the National HPV Vaccination Roundtable. She’s also shared her story and experiences on Presidential Cancer Panels convened by the White House. An award-winning television producer, Tamika is currently filming a documentary about cervical cancer, the women living with it, and the vaccine to prevent it.  Her story of patient-to-advocate / survivor-to-Cervivor inspires and mentors not only patients and medical communities, but anyone who has struggled with obstacles in their life.

Voices from Caregivers on Family Caregivers Month

As November comes to a close and families come together over the holidays, let’s remember the importance of the caregivers in our lives. November is National Family Caregivers Month and a great opportunity to give out appreciations to the family and friends who helped support us during our diagnosis, treatment, recovery, and today.

We are pleased that there are many caregivers who are active in our Cervivor community. Several have shared their experience on our blog.

Like Lillian, who wrote about how “taking care of my mother has made me grateful and showed me how to go on.”

“My great aunt took care of my mother. But when my aunt fell asleep, my mother would call for me to help her. I was young, and it was incredibly painful to take care of my mother and see her suffer. I developed a lot of inner strength during that time. I relied on the love I had for my mother to carry me through those nights. I remember one evening when she was in pain, we held hands and listened to the song ‘I Feel Like Going On.’ We listened to that song so many times that eventually we were both singing it. We both felt encouraged. I felt like I had the strength to take care of her, and she felt like she had the strength to live for her family.”

Lillian lost her mother to cervical cancer. In her blog, she reflects about the impact that caring for her mother had on her life. “Many times in my life there have been things that are rough. Many times I want to give up. Sometimes I am having a bad day. But I think about that day, when I held my mother’s hand and sang, and I feel like going on.”

Like Tarrence, who so honestly and openly shared the challenges of getting from one day to the next in his blog post, What did I do as a caregiver?  I endured. 

“I just kept going and tried to do things that could keep us all moving forward getting through one day at a time.  Ultimately my role as caregiver was to show up every day and do the very best I could.  That’s really all anyone can ask of you, and it’s literally all you can do…Through this experience, I learned a lot about what it means to really be with someone.   I learned that I can show up for someone in ways I’m not sure I knew I could before this.  I learned that I’m stronger than I thought I was and that my Heather is truly the strongest person I know.  I learned a lot about letting people in and being vulnerable.  For me, being a caregiver meant calling upon all I had to get through one day and onto the next.  It meant bringing the best parts of myself to the tasks we were presented with each day.” 

Like Claude, who learned about truly “being a man” when he became a caregiver to his partner Holly.

“In my opinion, being a man is standing with the woman you love and help her walk down a linoleum hallway in the middle of the night and holding her hand as she struggles to stay upright.  It’s holding the catheter bag filled with despair and fragile hope. Being a man is running to every CVS, Walgreens and 7-Eleven trying to find a back scratcher for Holly to use on her legs as she cannot bend down to reach them while she lies between fits of incredible pain. Being a man is staying awake all night to rub her back as gently as possible, so that she may rest for even just a moment.”

Caregivers are a core part of our lives and our Cervivor community. Please leave a comment below if you have an awesome caregiver you want to give a shout-out to. If you have a caregiver who is willing to write about his/her experiences and perspective, we’d love feature them in an upcoming blog! We are stronger when we share our stories, and the whole community can benefit. Email us at [email protected]

Is someone in your community currently helping support and care for a loved one undergoing cancer treatment? Make sure they have resources that can help, such as plugging in with the Caregiver Action Network.

48 Birthdays, 21 Post Cancer

Every year, as my birthday approaches, I go into reflection mode and start thinking about life. Life as it was. Life as it is. Life that almost wasn’t.

My life was forever altered by a diagnosis of cervical cancer at the age of 27. The days following the diagnosis were rough. Within a month of my diagnosis I landed in the hospital with shortness of breath and blood counts so low I needed my first blood transfusion. I spent exactly 30 days in the hospital, not sure if I was coming out alive. If you were around me at that time, you know how terrifying this period was, you know that my coming out of that hospital alive was nothing but a miracle (those were my pneumologist’s actual words). So here I am, celebrating #48 (or the 21st birthday I get to celebrate post diagnosis). 

Survival… Life after cancer… This is something that doesn’t happen to many of the women diagnosed with cervical cancer. Within the last year my Cervivor community lost 4 beautiful women in the prime of their lives as a consequence of cervical cancer. In the USA, where approximately 13,000 women are diagnosed with cancer in the last year, 4,200 women will die due to this cancer. Some people may look at these numbers and think they are small (I’ve been told that before); well let me tell you this: These numbers matter. These numbers matter to the women diagnosed with cancer, hoping they are on the right side of this statistics. These numbers matter to the families of the women who die each year, to the young children that will grow up without their mom… These numbers matter to those of us who survive this disease, because we know how close we cut it, how nerve wracking every follow up is, because the cancer may be gone, but the damage it did to our bodies is permanent (think of infertility, ostomies, lymphedema, neuropathy, bladder problems, just to mention a few). Most importantly, these numbers matter because we can change them. We can change the statistics because we have the means to prevent cervical cancer: The HPV vaccination is the #1 way to prevent cervical cancer. Plain and simple. A vaccine can prevent cervical cancer. I don’t think it can be any easier than that. 

We can literally protect our next generations from cancer-causing HPV strains by simply vaccinating our children (as early as 9yrs. old). It is an important vaccine because it would protect them from the high risk strains that are linked to cervical cancer (and cancer of the vulva, vagina, anus, penis, oropharyngeal (back of the throat). Cervical cancer will be like polio; gone, a thing of the past. I would love to see cervical cancer disappear and I believe that is possible with this vaccine. 

So each year, around this time, that sense of duty to those who did not make it demands that I tell you to vaccinate your children. That 27 yr. old Maria, terrified at hearing the news that would change her life forever demands that I tell you to vaccinate your children. It is imperative that you do because this is the one cancer we can basically eradicate. Every now and then I see these prayer chains pop up in social media asking you to share a prayer to find a cure for cancer; well, we now have a vaccination that can prevent a cancer and that is an answered prayer.

Celebrate my 48th birthday with me by scheduling your well-woman exam and vaccinating your children against HPV. Maria Franklin is a 20-year cervical cancer survivor who is also a part of Cervivor Leadership, and heads our Latina advocacy efforts. She was awarded our 2019 Cervivor Champion Award. Watch her story here.

A Call for Action & Education During National Hispanic Heritage Month

Did you know that Hispanic/Latina women have the highest incidence rate of cervical cancer in the U.S.? They undergo significantly fewer Pap tests than non-Hispanic white and black women and are less likely than women of other races/ethnicities to return for recommended follow-up after an abnormal Pap test.

These statistics from the American Cancer Society and Centers from Disease Control (CDC) are instructive to us at Cervivor to guide some of our educational efforts.

National Hispanic Heritage Month (celebrated Sept. 15 – Oct. 15 to correspond with the independence of many countries in Central America) honors Hispanic history, culture and contributions. Communities across the country mark the month with festivals and educational activities.

Educational activities? That sounds right up our alley as Cervivors!

Festivals? Preventing cervical cancer and saving lives feels like something to celebrate to me!

We want to halt cervical cancer in its tracks, in America and around the world. To do that most effectively, we need to be aware of the disparities in cervical cancer incidence and mortality among populations of women.

For example, in the U.S., black women (followed by Hispanic women) have the highest death rate from cervical cancer. Mortality (death) rates of cervical cancer among Hispanic women are 50 percent higher than those of non-Hispanic women, and incidence rates among Hispanics are twice the rates of non-Hispanic women. Different populations bear different burdens of this disease, for different reasons.
“I was diagnosed with Cervical Cancer stage IIB in 2008. I had not visited my GYN or had a Pap test for over 3 years. My mission now is to share my story to every woman especially Latinas, who are the most affected by this disease, and convey the message that my journey does not have to be theirs”. 
Patti Murillo-Casa

Data from the American Cancer Society show that Hispanic women are less likely to get regular Pap tests. Hispanic and Latino Americans amount to an estimated 17.8% of the total U.S. population, making up the largest ethnic minority. This makes it a focus for our educational messages about cervical cancer prevention with Pap testing, HPV testing and HPV vaccination. This makes it a focus for our advocacy, education and personal Cervivor stories. 

What can we do as Cervivors?

  • Familiarize yourself with Spanish-language educational resources and share them as part of your education and advocacy work. There is a downloadable Spanish-language “foto-novela” from the American Sexual Health Association, for example, fact sheets from the National Cancer Institute and cervical cancer screening patient information sheets from the American College of Obstetricians & Gynecologists. (These and many more Spanish language resources are available here.)


Join Cervivor Español: Private Facebook Group For Latina Cervical Cancer Patients & Survivors

  • Support local and national cancer control and prevention programs and policies aimed at decreasing disparities in cervical cancer mortality. For example: health reform efforts to reduce discriminatory practices against cancer patients and survivors (amen to that!); policies to include no-cost cervical cancer screenings and HPV vaccination as a mandated part of insurance coverage (hallelujah!), initiatives to expand HVP vaccination (yes!). 
  • Support the National Breast and Cervical Cancer Early Detection Program (NBCCEDP): The CDC’s NBCCEDP provides uninsured and underinsured women access to no-cost screening and diagnostic services, as well as a pathway to cancer treatment. Support federal and state funding for this program. Advocate for more funding to expand the reach of this lifesaving program. 
  • Share your story. We’d love to have more representation from Latina Cervivors on our site. Submit your story here and come to one of our Cervivor Schools to learn more about bringing education and advocacy to your community. 

Cervical cancer is preventable. Cervical cancer is colorblind. So are we at Cervivor. We are all bonded by this disease. We are all motivated to ensure that no one else has to go through what we’ve gone through. Let’s be aware of the racial disparities in cervical cancer, address them head on, and put our support, stories and voices behind programs that can change cervical cancer statistics and save lives. 

Let’s celebrate National Hispanic Heritage Month by recognizing the power and strength of the Latino community and to doing what we can to expand education about cervical cancer screening and prevention.