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.
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.
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.
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 someexperiences 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.
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:
“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.
“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)
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.
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.”
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.
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!”
“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.”
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:
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.
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.
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.
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!
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.
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.
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 Chavezvive 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.
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 conversationswe 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 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!
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.
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 2019Cervivor School graduateand is a key support to our growing Cervivor Espanol community.
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.
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.
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.
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 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 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:
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.
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.
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.
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 beproactive 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.
“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 35hospital 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.
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.”
“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 firstname.lastname@example.org. 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?
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 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 storyand learn how, amid this most recent diagnosis, her Cervivor Spark and passion to prevent other women from cervical cancer gets stronger each day.
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.
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.”
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@example.com
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.
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.
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.
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.
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
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.
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 blogFertility, 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.
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.
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.
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.
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.
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.
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!
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.”
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!
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.
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.
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.
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 EspañolFacebook 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.
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.
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.
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.
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.
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.
“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?
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.
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”?
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!
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.
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!
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.
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.
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!
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.
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.
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!
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.
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.
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.
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.
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.”
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 Christmasbecause 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.
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.
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.
“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.”
“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 firstname.lastname@example.org
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.
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.
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.
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.)
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.