Excitement is in the air as Team Cervivor and several attendees from across the globe prepare to converge in Seattle, Washington, this week for Cervivor School!
We are thrilled to welcome an incredible group of survivors, advocates, and speakers who are dedicated to making a difference in the mission to eliminate cervical cancer.
Cervivor School is a unique opportunity for us to come together, share our experiences, and gain valuable knowledge that will empower us as patient advocates to drive change and raise awareness about cervical cancer prevention and the many facets of being a Cervivor. It’s a place where we can learn, grow, and connect with one another, all with the shared goal of eliminating cervical cancer.
Over the course of this event, we will engage in meaningful discussions, hear from expert speakers, and participate in workshops and activities designed to strengthen our advocacy efforts. Whether you’re a seasoned Cervivor or attending for the first time, this is a chance to expand your knowledge, network with like-minded individuals, and become an even more effective advocate for cervical cancer awareness and prevention.
We would like to extend our heartfelt gratitude to everyone who has made this event possible, including our generous sponsors and community supporters as well as the dedicated Cervivor team. Together, we are creating a world where cervical cancer is front and center in awareness so it can become a thing of the past.
If you would still like to give to our Cervivor School fundraiser, there is still time! Please make a donation directly through our website or through our Classy fundraising page. Every donation matters!
As we gather in Seattle, let us embrace the spirit of unity and collaboration that defines the Cervivor community. Together, we can drive change, support one another, and work towards a future where no one has to face the challenges of cervical cancer.
Safe travels to all attendees, and we look forward to seeing you in Seattle!
Cancer is a life disrupter that can test one’s physical, emotional, and mental strength to the brink. Those who have endured this relentless disease and emerged often feel called to do something more so others don’t have to go through the same thing. Sharing their story becomes an invaluable source of hope, inspiration, and surprisingly, healing.
Anna, Communities of Color RetreatAshley, HPV Cancer Survivors School
This is the importance of sharing your story and sparking more below-the-belt conversations.
Breaking the Silence Gynecologic cancer often carries with it a heavy stigma, and many patients and survivors initially find it challenging to talk openly about their diagnosis and treatment. However, sharing your story helps break the silence surrounding these cancers, making it a topic that is easier for others to learn and discuss. This shame resilience fosters a sense of community and support, as others facing similar challenges can relate to your experiences.
Providing Comfort and Hope This journey can be a frightening and isolating time, both for patients and their loved ones. When you share your story, you offer comfort to those who are in the midst of their own experiences. Your insights provide them with hope and reassurance that they, too, can overcome this formidable adversary.
Empowering Others Your story can empower others to take control of their health. It can motivate individuals to prioritize regular check-ups, engage in healthier lifestyles, and advocate for themselves when it comes to their medical care. By sharing your journey, you become a beacon of strength and resilience that encourages others to take action.
Raising Awareness and Changing the World Your story can contribute to increased awareness about the disease. By describing the symptoms you experienced, the importance of early detection, and the challenges you faced during treatment, you can help educate others about cancer prevention and the need for regular screenings and it can even improve the way the treatment is provided in the future. This knowledge can ultimately save lives.
Milicent & Sally making community connections in KenyaKarla speaking to her Catholic school in Honduras
Sharing your cancer journey as a patient and survivor is a profoundly meaningful and impactful endeavor and can make a lasting difference in the lives of others. Cervivor encourages you to share your story today starting with our easy-to-follow template. It might be exactly what someone needs to hear to find the strength to face their own cancer battle with courage and determination.
Join us in our last Gynecologic Cancer Awareness Month Below the Belt Conversations live on the Cervivor Facebook page on Thursday, September 21st starting at 7 PM EST!
As we progress through one important awareness month, we intersect with another: National Hispanic Heritage Month.
During this time, we are honored to embrace the vibrant colors, rich traditions, and contributions of the Hispanic community. Cervivor stands in solidarity with our Hispanic and Latinx members in raising awareness about cervical cancer within this population.
National Hispanic Heritage Month, celebrated from September 15th to October 15th, provides us with an opportunity to not only celebrate the incredible cultural diversity and history of Latinx individuals but also to shed light on important health disparities that affect this community.
Let’s Talk About It
Cervical cancer is a highly preventable and treatable disease, yet it disproportionately affects Latinas in the United States. Here are some key statistics that highlight this issue:
Higher Incidence: Latinas have a higher incidence rate of cervical cancer compared to non-Hispanic white women. This means they are more likely to develop cervical cancer.
Lower Screening Rates: Latinas are less likely to undergo regular cervical cancer screenings, such as Pap tests and HPV tests, which can detect cervical cancer and the human papillomavirus at an early and treatable stage.
Increased Mortality: Latinas face a higher mortality rate from cervical cancer, primarily due to late-stage diagnosis.
These statistics underscore the importance of raising awareness and promoting regular cervical cancer screenings within the Latinx community. Regular screenings are crucial for early detection and intervention, which can save lives.
Get Involved
At Cervivor, we are committed to supporting all individuals affected by cervical cancer, including those within the Latinx community. We offer a safe and inclusive space where you can find resources, share your stories, and connect with others who understand your journey.
Here are a few ways you can get involved during National Hispanic Heritage Month and beyond:
Are you a cervical cancer patient, survivor, or thriver? Share your Cervivor story. Your story has the power to create change.
Support and empower others to schedule their cervical cancer screenings.
Knowledge is power. Check out all the amazing educational resources on our website and content across our social media platforms. Share it with your networks to help spread awareness.
As we celebrate the vibrant and diverse Latinx culture during National Hispanic Heritage Month, let’s also take a moment to remember the importance of health and well-being by empowering our health below the belt. Regular cervical cancer screenings can save lives, and Cervivor is here to provide support and resources to help anyone on their journey.
Cervivor thanks you for being a part of the community, and together, we’ll make a difference in the cervical cancer disparity gap among Latinas.
As fall quickly approaches, we find ourselves entering a month of profound significance for Cervivor and all those impacted by gynecologic cancers. September is not just another month; it’s Gynecologic Cancer Awareness Month, a time dedicated to raising awareness, educating, and advocating for those affected by gynecologic cancers. It’s a month where we come together to make our voices heard and support one another in our journey towards better health and well-being.
Did You Know?
Gynecologic cancers, which include cervical, ovarian, uterine, vaginal, and vulvar cancers, impact the lives of thousands of women and individuals with female reproductive systems each year. The statistics may be alarming, but they underscore the importance of dedicating a month to raise awareness and promote early detection:
In the U.S. alone, an estimated 98,000 women will be diagnosed with a gynecologic cancer each year.
An astonishing 30,000 lives will be taken by the disease.
Gynecologic cancers are often diagnosed at advanced stages, making early detection crucial for improved outcomes.
Each of these cancers comes with its unique set of challenges, but they all share the common thread of affecting the lives of those we care about.
Our Role in Gynecologic Cancer Awareness Month
Cervivor plays a pivotal role in the fight against gynecologic cancers. We are not just a support network; we are a community that empowers survivors, advocates for change, and educates the public about the importance of prevention and early detection. Here’s how we’re making a difference:
Support and Empowerment: Cervivor provides a safe space for survivors to share their stories, connect with one another, and find solace in knowing they are not alone. Through our online platforms, events, and resources, we empower individuals to take control of their health and well-being.
Education and Awareness: Our organization is dedicated to spreading awareness about gynecologic cancers, with a special focus on cervical cancer. We offer educational resources, campaigns, and outreach initiatives to ensure that women and individuals are informed about the risks, prevention, and early detection methods.
Advocacy: Cervivor is at the forefront of advocating for policy changes and improved access to healthcare services. We work tirelessly to promote HPV vaccination, regular screenings, and equitable healthcare for all. Become a partner in purpose with Cervivor today!
How Can You Get Involved?
Share Your Story: Your story is a powerful tool for raising awareness. Share your journey, your triumphs, and your challenges on social media, using the hashtags: #GCAM, #Cervivor, #WeAreCervivor, #EndCervicalCancer.
Educate: Take the time to educate yourself and others about gynecologic cancers. Knowledge is the first step towards prevention and early detection.
Support Cervivor: Consider making a donation to Cervivor or participating in our fundraising initiatives. Your support enables us to continue our mission to empower, educate, and advocate for those affected by gynecologic cancers.
Join Our Community: If you or someone you know has been affected by gynecologic cancer, join our community. Together, we can make a difference and support one another in our journeys.
As we progress through Gynecologic Cancer Awareness Month, let us remember that together, we are a powerful force for change. By raising our voices, sharing our stories, and supporting one another, we can make strides in the fight against gynecologic cancers. Thank you for being a part of the Cervivor community, and for standing with us in this important cause. Stay tuned for our upcoming events and activities throughout the month of September!
Give 8/28 is a national giving day dedicated to supporting Black-led nonprofits. Cervivor is sharing the incredible impact of your support on our mission to eradicate cervical cancer and improve the health outcomes of Black women and marginalized communities.
At Cervivor, we are committed to addressing the disparities in cervical cancer education, treatment, and prevention among Black women. Our mission is to empower individuals with knowledge and resources so they have access to care, promoting early detection, and ultimately, reducing the burden of cervical cancer in our communities.
1. Diversity, Equity, and Inclusion: As Cervivior continues its longstanding commitment to diversity work with the addition of Kimberly William’s role as the Chief DEI Officer, Cervivor has expanded and developed four diverse private groups to provide a safe, relatable space for members to express how cervical cancer impacts their lives and their communities.
2. Advocacy and Education: Along with our premiere educational patient advocacy program, Cervivor School, and the Cervical Cancer Advocacy Retreat for Communities of Color, our team and dedicated volunteers have been working tirelessly to raise awareness about the importance of regular screenings and HPV vaccinations. By participating in community events, health fairs, and online campaigns, we aim to normalize conversations around all things cervical cancer.
3. Support for Cervical Cancer Patients, Survivors, and Thrivers: We offer emotional and practical support to those diagnosed with cervical cancer. From connecting patients with our support group, Creating Connections, to providing educational resources, we strive to create a strong network of empathy and care during their journey no matter where they are located.
Give 8/28 is a pivotal opportunity for us to expand our reach and amplify our impact even more. Your generous contribution on this day will directly enable us to:
Expand our educational initiatives to reach more communities.
Provide increased access to diverse, equitable, and inclusive spaces for those impacted by cervical cancer.
Strengthen our advocacy efforts to eliminate disparities in cervical cancer outcomes.
How can you help?
1. Donate: Visit our donation page on August 28th to contribute towards our Give 8/28 campaign. Your support, no matter the amount, will make a significant difference in the lives of those we serve.
2. Spread the Word: Share our mission and the importance of Give 8/28 with your friends, family, and colleagues across all social media platforms. Together, we can create a ripple effect of positive change.
3. Volunteer: If you’re passionate about cervical cancer and health equity, consider joining our team of volunteers. Your skills and time can contribute to making a lasting impact.
By supporting Cervivor on Give 8/28, you are directly contributing to our efforts to eliminate cervical cancer disparities within our communities. Together, we can achieve better cervical cancer outcomes for Black women and marginalized populations.
We thank you for your unwavering support. We look forward to standing beside you on Give 8/28 and beyond.
Last week presented to be a busy week for patient advocacy. Wednesday was recognized as National Nonprofit Day where Cervivor was chosen as a nonprofit partner of choice through the Kendra Gives Back program through Kendra Scott. The Tampa store location hosted Avi Grant-Noonan, a cervical cancer survivor and patient advocate. Together, we fundraised around $250 for Cervivor in honor of the national awareness day. Avi states, “It was amazing! We had such a great time.”
And this past Saturday was recognized as National Patient Advocacy Day. Our Cervivor community was in action painting coast-to-coast teal and white. The event blended a collaborative approach to cervical cancer patient advocacy including patients, survivors, medical professionals, and industry partners. This day was meaningful for the Cervivor community as it allowed for them to discuss patient advocacy and its importance, along with understanding the impact of sharing their stories in their communities. Attendees were encouraged to spark the conversation surrounding cervical cancer and create change in their local communities.
Community members from Cervivor Caribbean and Cervivor Africa tuned in via the virtual meet-up. This brought about awareness of disparities that members face even in the global community. This open discussion of disparities helped attendees work together to encourage, develop, and plan in adding to our mission to eliminate cervical cancer. Cervivors and industry partners left this event (in-person and virtual) with a reminder that no one fights alone.
Phyllis Adams (NY Event Attendee): “What a great event meeting with other Cervivors and sharing our unique stories!!! It was a pleasure meeting you in person and allowing me to share my story! Awesome day!”
Anna Ogo (WA Event Co-Host): “We had a blast We covered so many important topics – scanxiety, mental health, dilators, support for caregivers, cervical cancer screening guidelines, HPV, stigma, vaccination, education, ADVOCACY, and the list goes on…”
Lorie Wallace (MI Event Host): “What a wonderful event. Considering there are over a million people right now who are attending the world’s largest car cruise just down the street from this event, I’m very thankful that I got a wonderful group together. Thank you. Happy National Patient Advocacy Day: Metro Detroit, Michigan!”
Since 2017, National Nonprofit day has been recognized on the 17th day of August annually. This day is set aside to acknowledge nonprofit organizations and the impact they have made on the communities they serve. Here at Cervivor, we are reminded of the impact that nonprofits have on communities by making the world a better place. This day provides us with an opportunity to reflect on the vital role that nonprofits play in addressing societal challenges, fostering empathy, and creating positive change. From local grassroots initiatives to international humanitarian efforts, nonprofits come in all shapes and sizes, yet they share a common purpose – to uplift, inspire, and provide aid where it’s needed most.
Founder and Chief Visionary of Cervivor, Tamika Felder, created this nonprofit organization understanding the importance of cervical cancer education, empowerment, advocacy, and support. Originally founded as a small support group, it now spans across the globe spreading awareness, support, and advocacy for those that have been impacted by cervical cancer. As a global organization Cervivior continues to work diligently to ensure that no one feels alone in their fight. No matter where in the world you are, if you’ve been impacted by cervical cancer, Cervivor has a place for you, with a community that will support you throughout your journey. This organization understands the importance of “community” even when it is virtual, and continues to create opportunities for life long connections and bonds.
Sophie shares how this organization has impacted her life as a Cervivor community member in the UK:
“Cervivor has helped me to not feel alone. I met my wonderful friend in this group and we have journeyed together for the last 2 years almost. I am from the UK and currently visiting her in Canada. Forever thankful for the beautiful friendship I’ve gained from this group. Cancer was nowhere near as lonely as it would have otherwise been.”
Additionally, the Comfort Care and Compassion Program was officially launched on this day two years ago with the help of Community Engagement Liaison, Morgan Newman and a committee of volunteers. The program was developed to support those impacted by cervical cancer at any stage of their journey. It served 121 individuals by the end of 2021.
Now, in the eighth month of 2023, it has served nearly 200 individuals with tote bags, support resources, words of encouragement, and more. Cervivor now offers the request form via the website allowing more patients, survivors, family members and friends, as well as care teams to request the right support for their loved ones.
Understanding the continuous need to expand our footprint, Kimberly Williams was added as the Chief Diversity, Equity, and Inclusion Officer here at Cervivor. In this role, she is a key contributor in recommending, developing, implementing and managing Cervivor’s U.S. and global diversity, equity, and inclusion initiatives. This organization understands that diversity is a strength and when these differences are embraced it can encourage better results in our communities.
As Cervivior continues its longstanding committment in diversity work with the addition of Kimberly’s role, Cervivor has developed four diverse private groups to provide a safe, relatable space for members to express how cervical cancer impacts their lives and their communities. The four private groups include: Cervivor Africa, for those that were born, raised, or reside in the continent of Africa; Cervivor API for those who identify as Asian or Pacific Islanders; Cervivor Caribbean, for those that were born, raised, or reside in the Caribbean islands, and Cervivor Noir, for those that identify as Black. Adding the aforementioned groups provides us with access to communities through education and trained patient advocates who can provide influence to ultimately end cervical cancer.
We could not work toward our mission to ultimately eradicate cervical cancer without your generous support. On this special day, we encourage you to join the movement and show your support for this nonprofit organization. Here are a few meaningful ways you can get involved:
Volunteer: Dedicate your time and skills to a cause you care about. Sign up here.
Donate: Every little bit counts. Consider making a financial contribution to Cervivor to help further our mission.
Spread Awareness: Use the power of your voice and social media to raise awareness about cervical cancer. Share stories, impact, and accomplishments to inspire others to get involved too!
As we celebrate National Nonprofit Day, let us express our deepest gratitude for being a part of this journey with us. Together, we can continue to uplift one another and drive positive change that ripples far beyond our immediate reach and one day, eliminate cervical cancer once and for all!
I was informed I wouldn’t be able to carry children in the same appointment I was told my cervical cancer was Stage IIB at the age of 30. Luckily, my badass oncologist provided me with options to have biological children down the road via surrogacy. I immediately started IVF and froze nine healthy embryos.
Years later, when the concept of survival was on more solid ground, we began our surrogacy journey. We contacted an agency and learned the process. Long, grueling, and expensive, typically in the $80-$100,000 range. I’m sorry what? We moved forward because, simply, we were able to. So many women and loving couples don’t have this privilege.
Finding our surrogate was an arduous and awkward process. There is no manual for meeting someone that is going to carry your child. “Hi, we’re Kate and Matt. Can we put our baby inside of you? Here’s an orchid to show our appreciation of your consideration.”
When we finally got matched with J, our surrogate whose name I’ll keep to just us, we were so relieved. A mom to three of her own and a foster mom, she is just a special woman. She was so sensitive to our situation. She had never been a surrogate before so we knew we would be stumbling through this together, but we had a tight bond from the get-go. We trusted each other. We always put each other first.
And that trust was tested when it was time for all the necessary legal protocols. Even though Massachusetts is a surrogacy-friendly state for both intended parents and surrogates, the legal process is extensive, to say the least. The lawyers propose endless scenarios you need to agree upon. The most trying topic for discussion is abortion or reduction if there are multiples, as you need to be aligned on all possible situations that may rise. Legally, J’s decisions would be the only one honored while she carried the fetus. We had no legal rights until the baby came out. Luckily, we were fundamentally aligned on decisions we would make if faced with these difficult circumstances. Other things to consider were how the birth would go, what we were comfortable with her doing or not doing during pregnancy, and then of course her payment structure.
Never did I think starting a family would require signing on so many dotted lines and having to rely on the ideologies of another woman to dictate how we would make decisions about our family. This is the reality of surrogacy. The experience is no longer just yours; it’s shared.
Once we finally got everything signed, J started IVF. Right before we started, there were rumblings about a global pandemic. At the time we didn’t understand the gravity, so we proceeded. But midway through our cycle, COVID-19 started taking more lives, and the world shut down. We made the heart-wrenching decision to stop everything. I broke down. We had been trying to start a family for 18 months at that point, and we were still so far from it becoming a reality. We consoled each other and just focused on protecting ourselves.
In July, IVF clinics began opening as studies were showing COVID-19 had minimal impact on a fetus. After agonizing over the decision, we started another cycle. We transferred two of our healthiest embryos, one boy and one girl. On transfer day, Matt and I met J outside the hospital and FaceTimed during the procedure. Most people get to have sex while making a baby. Us? A sterile waiting room at a hospital on FaceTime. Good times. J was incredible that day. She made us matching shirts and just kept saying, “This is going to happen!” We soaked in her optimism.
We began the dreaded “two-week wait.” I was so paralyzed with anxiety those two weeks it was hard to focus. There were also multiple pregnancy announcements among family and friends during that time too which was so wonderful and overwhelmingly difficult.
Because let me be very clear about something – when you’re in the thick of this and someone shares a pregnancy announcement with you, you feel everything. You’re happy. You’re gutted. You’re thrilled. You’re devastated. You feel every single emotion at the highest level. Very few people say it’s ok to feel this way. But I’m here to say it’s ok. You can be thrilled for the people you love while feeling devastated. We are humans with complex emotions, we aren’t robots. Feel everything. You’re not a terrible person. But maybe stay off social media. That’s my best advice.
Fortunately, at the end of the wait, we received amazing news. J was pregnant. We were pregnant. With twins? They didn’t know. We would have to wait for our scan. A few days later, J called to say she was bleeding. A lot. Our hearts stopped. The next day we went to the hospital for a scan, but with COVID protocols I wasn’t initially allowed in with her. J stood up to the security guards and proclaimed, “She’s coming with me, she’s the mother!” They let us through. I had never appreciated her more than in that moment.
With Matt on FaceTime in the parking lot, not with me holding my hand like how we normally face everything in life, we learned it was a hematoma which is very common with IVF. No major risk, but they would keep an eye on it. But then we also saw, for the first time, our baby. One baby. We felt a million things. Heartbroken one of the embryos didn’t take, thrilled one did. I just wanted to be with Matt. I felt horrible showing J my disappointment both didn’t take but then when we got back to the waiting room, she looked at me and said, “I was really hoping they both took for you.” I let the tears flow. She understood how momentous that moment was. It felt like a massive loss and victory all at once. I met Matt back in the parking lot and cried. But we were pregnant with a healthy singleton who we found out weeks later was a baby girl. And woah, that changed everything.
The next ten months were as wonderful as they were hard. What was it like having someone else carry my child? Surreal. The moment that babe became real to us, a primal instinct came over, and protecting her was all we cared about. But the fact that our protection could only go so far, as it was in the hands of someone else, was brutal. Zero control. Especially during a global pandemic. I had to trust her. Which of course I did but it wasn’t always easy. J was incredible about communicating, sending pics of her growing belly, and keeping us updated anytime Lou would kick or have hiccups. She texted me every morning from the line she waited in to get a smoothie, claiming Lou just really wanted one! It was difficult to hear from someone else what your daughter was up to or craving. We missed Lou and we didn’t even know her. Further, with COVID protocols, Matt couldn’t come into any of our appointments. He would wait in the parking lot and be on FaceTime or speaker phone. He never saw his daughter on the screen in real-time. Never heard her heartbeat in the doctor’s office. Never got to feel her kick in my belly. And our experience was so vastly different we didn’t always feel included in the mother or intended parent community. Even to this day, I feel isolated.
The time ticked closer to our delivery date. We decided to induce J so we didn’t risk missing the birth. We checked in at 7 am on a sunny day. J, her husband, and Matt and I hung out all day just waiting. It was a beautiful time. Finally, it came time for pushing. I believe that was the single hardest part of the surrogacy experience. I wanted to be the one pushing. Not the one sitting on the sidelines. When J struggled to get Lou out (she was sunny side up that little stinker), I just remember thinking that I should be the one struggling. That I should be the one fighting to get her out. I had zero control in that moment, and I wanted to crawl out of my skin. My daughter was right there, but so far away. Finally, after two hours of hard pushing, Lou was immediately placed in my arms (something that we had to legally agree upon) to start skin-to-skin. Matt and I locked eyes. He put his hands on his head in disbelief. We started sobbing. She was here. She was ours. We made it.
At the beginning of our journey, J had said to me, “You can only say thank you to me when that baby gets placed in your arms.” I looked at her and just kept saying over and over, “Thank you, thank you, thank you.”
Louella was magical. Carbon copy of Matt and all his relatives. It took us all a moment to bond and to get to know each other, I was so worried she wouldn’t be comforted by our voices. But she was. That girl knew she was ours from the first second she came Earthside. She took her bottle immediately. She tinkled all over me. She was so beautiful.
Not a single day with Lou is taken for granted. She turned two in May, and we are astounded by her intelligence, her curiosity, her hilarious one-liners, her curls, her love of drawing and scooting, her bravery, her everything. She’s everything.
The surrogacy journey is like surviving cancer. You are so happy you did but are angry you even had to. Cancer took so much from me, and the ability to carry children is certainly the most painful. But we just stay grounded in our gratitude as much as we can. We are so grateful for J. Grateful for my Cervivor sisters like Ginny who provided support during that time. Grateful for each other. Grateful for our family and friends who kept us going. Grateful for our doctors and medicine. Grateful for Lou, our light at the end of our tunnel.
If you’re in any part of this journey, beginning middle, or end, I’m here. We are all here. We know how hard this is. Feel everything but keep going. You’ll reach your light too.
Kate Weissman was diagnosed with stage II squamous cell carcinoma at the age of 30. She is a 2018 Cervivor School graduate, a Cervivor Ambassador, and a 2023 Cervivor Champion Recipient. Kate also serves as the Massachusetts State Lead Ambassador for the American Cancer Society Cancer Action Network (ACSCAN) where she lobbies to Congress for policies that would improve the lives of cancer patients and their families. She lives in Boston with her husband, their beautiful daughter Louella who was born via surrogacy after her treatment, and their fur baby Giada. She is the SVP of Operations at Weber Shandwick, and loves to read and cook!
Cervivor is committed to closing the disparity gaps that have plagued communities of color for decades. In an effort to close those gaps, Cervivor invited cervical cancer patients and survivors from around the United States to participate in the Cervical Cancer Patient Advocacy Retreat for Communities of Color in our nation’s capitol, Washington D.C.
Why is this so important to our mission? Research shows that while the rate of cervical cancer has been declining for decades in the U.S., health disparities persist. Hispanic women have the highest incidence rate of cervical cancer, followed by non-Hispanic Black women. Additionally, Black women are more likely to die from the disease than women of any other race or ethnicity.
So, what is the consistent theme with these health disparities? The consistent theme for these health disparities are health literacy and trust within the communities of color. As we navigated these themes, Cervivor ensured that each attendee:
Had a safe place to share their struggles, hurdles, and concerns in reference to their community and cervical cancer.
Was provided with information concerning cervical cancer, treatments, and screening.
Understood their role as a trustworthy change agent in their community.
Embraced the opportunity to learn from various speakers and their fellow survivors about how they could utilize their voices to end cervical cancer in their community.
Developed a strategic plan to impact their communities specifically.
Made a commitment to assist in closing the cervical cancer disparity gap in their community.
It’s imperative that those impacted by cervical cancer have the knowledge and empowerment to lead the charge in changing the narrative for communities of color. Read the personal testimonies from a few of the attendees and the progress they have made since the retreat below.
Gwendolyn shares her thoughts on what this retreat meant to her:
“The Community of Color Retreat had great impact on my life and I have not been the same since. The moment I arrived at the retreat, I noticed everything was planned with so much love and hope, and personalized for us as a collective but also individually as well. We cried, we laughed, we learned, we inspired each other, we listened, and we gained confidence and much knowledge to not only advocate for ourselves but for others as well – within our families, jobs, and communities.“
Since the retreat, Gwendolyn has been instrumental in planning the National Patient Advocacy Awareness Day event with other Houston Cervivors and in co-leading an upcoming health fair for cervical cancer awareness.
Rosalinda shares her insights:
“For many of us, conversations easily continued into dinner, late evening, and early morning coffee meet-ups! We were clearly vibing and opening up to be vulnerable, witnessing and holding space for each other. Native American, African American, Asian, and Latina cervical cancer survivor’s coming together to listen, share, teach, and support each other was a powerful experience! My heart is filled with gratitude for how effortlessly this all unfolded. My most precious take away? Tamika’s loving challenge that following the retreat we step up and use our talents, abilities, gifts, unique perspectives to Do Something small or big, to end cervical cancer.“
After her retreat experience, Rosalinda has jumped in on National Patient Advocacy Day planning, joined as a Cervivor Español Outreach Committee Member, and continues to set goals for reaching low-income populations to ensure they have access to education, screening, and cancer prevention resources.
“Hope – grounds for believing that something good will happen. This retreat provided a breadth of information about studies on cervical cancer, as well as how to raise awareness in our communities. Discussing the health disparities across the nation opened my eyes that more needs to be done and that we need to be able to have open, sometimes uncomfortable dialogue to inform others so that they do not have to go through the same things that we did.”
Following the retreat, Janice has been spreading awareness about HPV and cervical cancer through various tabling events at her local college campus and by helping Cervivor raise funds during an early 2023 Kendra Scott Gives Back event.
Although the retreat has ended, the work does not stop. Each attendee made the commitment as a Cervivor Patient Advocate to assist in closing the cervical cancer disparity gap; by creating a culture of diversity, equity, and inclusion which includes supporting, educating, and motivating their communities that have been affected by cervical cancer.
It’s a great reminder that each day we all have an opportunity to provoke change by elevating our voices. We hold the power to save lives for generations to come. Help us continue to shine a light on these disparities by sharing our content with your networks.
Cervivor, as an organization, authentically embraces diversity, equity, and inclusion across all aspects, ensuring that individuals from various backgrounds feel valued, respected, and represented. The organization recognizes that diversity encompasses a wide range of identities and experiences, including persons with disabilities, religious or ethnic minorities, people of color, native/Indigenous peoples, women, gender identity, and sexual orientation.
Interested in learning more about future Cervical Cancer Patient Advocacy Retreats for Communities of Color? Connect with us at [email protected]!
In 2019, my beautiful son was born. I had my first abnormal pap a month after his birth.
A year and a half later, with multiple colposcopies, I was finally told to have a LEEP. A month later, I got a phone call from my gynecologist while at work. It was the phone call that changed my life; I was told that I had adenocarcinoma of the cervix.
I rushed home with tears in my eyes. Not wanting to tell my husband or, for that matter, my mother. She had just started feeling better after her own treatments and a stem cell transplant. Her hair was finally growing back. How can I share this news with her, that I, too, have cancer? My brother was diagnosed with testicular cancer in 2018, my mom was diagnosed with multiple myeloma in 2019, and then a year after her diagnosis, I was told I had cervical cancer. How can this be happening to one family? What did we do wrong?
The very next day, I distinctly remember asking myself, “How did I not know what HPV was? How did I not know there is a vaccine to prevent my cancer?”. I needed to create awareness for my fellow lady friends. We need to be made aware of what our pap tests are looking for.
Being a new mom is already a challenge. Your whole world has turned upside down for this beautiful little creature who never sleeps, constantly eats, and cries all the time. I was already drowning. I absolutely love my son, but at that moment in time, I felt like I lost a part of who I was. Now, I’m just a mom, not Victoria.
Then a cancer diagnosis slaps you in the face.
My Family
Surviving cervical cancer gives you a whole new perspective on life. My attitude towards living and being a part of my family has changed dramatically.
My son, Jude, is now three years old. Knowing that cancer was in my body and knowing that if I didn’t find it or treat it, he would have been left without a mom; tears up my heart. I cherish every moment I have with him. Yes, even the crazy tantrums and the days I want to pull out my hair!
When my mom had her stem cell transplant, I was one of her caregivers. I saw firsthand what it was like to watch your mom fight for her life. I was fortunate enough to not have to go through radiation or chemotherapy; my son only knew mommy was “ouchie” (after my radical trachelectomy) and to let me heal.
I am here for my family. I am present in all things good and bad.
Being shown that cancer doesn’t discriminate on your age, really made me appreciate life and live it to the fullest. No more saying “well, maybe one day, I’ll do it” – now is the time!
My Friends
Explaining to my friends that I had cervical cancer truly felt like an out-of-body experience.
Like me, they were very uneducated on what HPV was and how it can cause cancer. My goal at the time wasn’t to create awareness, but more to let them know what was discovered and my treatments. My friends are the family I chose, and they needed to know.
Having this conversation and sharing everything with my friends is really what drove my desire to get involved in advocacy.
Creating Awareness
Bringing awareness to cervical cancer has been the biggest part of making my survivorship count.
As I mentioned, I had no idea what they look for during my pap test and just how important that truly is. How science and researchers have discovered a vaccination that can prevent certain HPV cancers.
During this cancer journey, I have found my voice. I need people to hear it, and not just hear it, listen! Educating my friends & family became my priority.
Originally, I shared my story and created awareness through social media. I attended a conference held in Toronto, Ontario, called “Health eMatters”. Here I met other advocates and heard about their journies. I have learned tips/tricks and other resources/tools to engage with more people.
My mom and I have started an Instagram account about a mother and daughter duo fighting cancer together. This is a newly formed platform and I’m excited about the possibilities and the number of people we can reach!
Being a survivor of cervical cancer, I find it is my responsibility to share my story and create awareness of cervical cancer. Don’t ignore the uncomfortable five minutes of a pap test! Get your vaccination!
If I help just one person or encourage just one person to get their pap test, I have done my job as a cervical cancer survivor and advocate.
Ending the Stigma
I, along with a lot of my Cervivor friends, have taken the challenge of stimga head-on.
We all know that cervical cancer has a stigma with it because it is related to HPV. So, it must be a “dirty” cancer. Educating the world about how common HPV is and how most people will have it at one point in their lives. Most immune systems are able to fight it off, while some aren’t so lucky and it can turn into cancer.
I was told I had cervical cancer caused by HPV and I automatically went to the thought of, “How? I’ve been with my husband for over ten years!”. I had no idea HPV could lay dormant for years!
So, back to educating because this is important. Everyone needs to know that just because you have cancer caused by HPV, it does NOT mean you “sleep around” or that you are “dirty”. It only takes one encounter!
We must end this stigma. I am not ashamed of it. I am not embarrassed. I will voice it loud and clear that I had cervical cancer and that you can prevent yourself from getting it.
TOGETHER, LET’S END THE STIGMA around cervical cancer!
Future
Looking towards the future, I would love to be able to connect with other cervical cancer survivors in Canada and truly make a support group here.
I want to be able to help those who have been newly diagnosed and be able to provide them with as much information and support as humanly possible.
I want to share my story with media outlets and really create awareness here in Canada. I’ve been talking with my local MPP about getting the Gardasil vaccination a priority and covered by our OHIP here in Ontario.
There are many steps left in my future of making my survivorship count. I am only two years out from being cleared of cancer and I’m just getting started on my advocacy!
Victoria Falla is born and raised in Hamilton, Ontario, Canada. She is a 33-year-old cervical cancer survivor. She was diagnosed with stage IB2 cervical cancer in 2020. Victoria is an active cervical cancer advocate who will make her survivorship count with every breath she takes.
As cancer survivors and patients, we carry our scars, visible and invisible, with us forever. These scars hold pain and trauma but they are also reminders of how we do heal, how we move through our new world changed but still living our lives out loud.
Whether you wear your scars as badges of honor, gently acknowledge why they are here or chose not to give them the time of day, we commend your choice. You have been through too much to ever feel you need to conform to anything outside of your own comfort.
This post was inspired by community member Christy Chambers and her post, What A Beautiful Mess.
Tiera W – 6 Leeps. 6 biopsies. 1 oophoropexy. 36 rounds of radiation . 5 rounds of chemo. 6 brachytherapies. 3 PET-scan. 10 MRI’s. 2 Bone Scans. 40 Hyperbaric Oxygen Treatments. Left Hydronephrosis. 120+ Pelvic Floor therapy sessions. 1 Bilateral Ureter reimplantation. I’m still here surviving and thriving.
Amanda Z – I’ve learned to accept all my scars as badges of bravery. Some are big and some are small – much like the battles I fought during each of them. But each one is a reminder that I prevail. I can and will win. And I’ll keep winning as long as I can. Yes, sometimes I wish I didn’t have them but beauty goes deeper than my scars and I truly try to remember that every day. With scars and a stoma, it’s important for me to remember my victories and use my scars to pull strength from everyday and live my life!
Tammy B – My Laporotomy scar is beginning to fade, but there’s no hiding it. I also have the scars and a lump in my chest from my port. Those things, along with the 50 pounds I’ve gained from the steroids, and my short newly grown hair regrowing since chemo, I don’t look anything like myself. I’m still learning to accept the new person in the mirror.
Dorrie K – When people ask me if I have any tattoos I tell them that I have FIVE but they can’t see them unless I wear the right bathing suit. I’m proud of my tiny black pinpoint sized radiation tattoos – they are my battle scars and remind me of the warrior I was 25 years ago!
Ana R – After 6 abdominal surgeries my stomach is a road map of scars. I wish that when I looked at them I felt strong for all that I have endured, but instead they are a reminder to me of all my body has been through and they make me sad. It took me a full year before I would let my husband touch my stomach after my third major surgery. I hope someday they will be a source of strength to me, but for now, they are just a reminder of the many things cancer has changed about my life.
Sara J – Leep/Cone 2019. Radical hysterectomy 2022. Chemo/Radiation 2022. Chemo 2023. I wasn’t sure how I felt about my large abdominal incision but after my radical open hysterectomy, it’s just one more step I took to help save my life. It shows strength, beauty, and courage.
Leesa J – My scar is my blessing and my nightmare all wrapped up in one. It’s one single scar that represents both birth and death: the birth of my one and only child and the death of any future pregnancies. A birth that saved my life because had I not gotten pregnant, my cancer would have been very advanced by the time it was found, and a death that took my uterus and my ability to grow another life inside of me ever again. I carry my scar proudly and even though it is a painful reminder of all that was lost, all I have to do is look at my son and see the beauty in it.
Rachel S – I am living the new normal being a survivor. I have scars that are visible. The invisible scar was having a cancer nobody could see.
Thank you so much to our community members who shared their reflections on what it means to survive cervical cancer everyday.
Our bodies have carried us through trauma and to the other side of grief. Invisible scars are just as painful as those that change the landscape of our bodies. Do what you need to do to live and thrive with them and despite them.
In case you need a reminder, you are beautiful. Inside and out. You are a Cervivor, inside and out.
Cervivor started as a grassroots organization in 2005 founded by Chief Visionary, Founder, and 22-year cervical cancer survivor, Tamika Felder. A vision that has blossomed with hard work, persistence, and a ton of volunteers to help carry out the mission.
Now, Cervivor is known as a global community that goes above and beyond to reach those affected by cervical cancer. The organization’s mission is to empower cervical cancer patients and survivors by educating and motivating them to use their voices for creating awareness to end stigma, influence decision and change with the ultimate goal of one day ending cervical cancer.
One reason Cervivor has been so successful in providing programming and support to its community is because of the generous donors and community members who fundraise on behalf of Cervivor. Funding and fundraising are critical components for a nonprofit to effectively operate, expand its reach, measure its impact, and work toward its mission. Without these resources, nonprofits may not be able to provide essential services, respond to emerging needs, and create meaningful change in their communities and beyond.
Each year, the fundraising committee and community members brainstorm new ideas to have fun, spread awareness, and raise funds for Cervivor and its programming and outreach efforts.
Cocktails & Conversations with One Hope Wine
Outside our typical grants and sponsorships, in 2023 we have fundraised:
Plus increasing our monthly donors by simply asking for them to replace their $5 for a cup of coffee to go towards our mission instead.
Virtual Pap Rally & RunJenn’s Birthday Donation Drive
There are so many simple ways you can show your support for Cervivor and every dollar matters!
We understand that everyone has a different comfort level and depending on your circumstances, not all of these options will make sense but if Cervivor has been meaningful to you, please consider supporting us today by creating your own fundraiser with our 2023 Fundraiser Toolkit. This toolkit covers a wide variety of options for all levels of fundraising.
The lotus flower, in addition to being beautiful, grows in bodies of water from the bottom. Through mud and water, the flower leaves float on the surface in hues of pink or white. The concept of resiliency was not new to me. Though young in age, I have felt I have gone through many challenges. None as hard as the year 2021.
The year of misery began with my thirtieth birthday. Not only did I turn the dreaded 3-0 but that same day my car broke down. Not a great start to the year. Shortly after that, I began showing bizarre symptoms I couldn’t explain. Becoming concerned as they continued a few months later, I began seeing doctors. And more doctors. And more doctors. Ultimately leading to the diagnosis of stage II cervical cancer in May.
It is weird to believe that it was not the worst thing to happen that year. A few weeks after my diagnosis I celebrated my son’s second birthday at my house which lead to the bursting of a pipe in my walls that flooded not only my kitchen but my bathroom as well. This led to the deconstruction of the area to get rid of the mold. I was left with no counters, no flooring, and missing half a wall between the bathroom and kitchen.
I had never felt stress like that. And I had not even begun treatment yet. I was worried about construction, my treatment, and my son. I started my chemo and radiation in July and a week later my beloved dog, Cookie, passed away due to her own battle with cancer.
Cookie
To give a short background, Cookie was the dog I got in college and who had been with me for a decade through many challenging mental health battles. After she passed, I got low. I didn’t want to fight. I wanted to end it all. But then I remembered I was a mom to a beautiful toddler who needed me. I could not give up.
I muddled through treatments with low spirits. The construction finished and my home was put back together. My treatments ended and everything looked ok. But my moods had not improved.
It wasn’t until I attended a conference with a keynote speaker who hit on the concept of changing the words “I have to” into “I get to”. He used examples of “getting to wash the dishes” and so on. His words struck something inside me. In a follow-up meeting with my team after the talk we went around the table saying things we get to do. Most of my colleagues spoke about getting to do laundry because that means they had clothes and other great things. When it got to me I very quietly said “I get to be with my son because the cancer did not win”.
Silence filled the room followed by light applause. I wasn’t exactly looking for that type of response but suddenly my mood clicked. I get to continue my life. I get to continue learning and sharing precious moments with my son. I get to give another lonely dog in a shelter a happy life. I get to live!
And since that conference, every time I feel that I am hitting a wall especially when dealing with doctor follow-ups and tests, I just silently tell myself “I get to do this”.
Rachel Rump lives in South Bend, Indiana. She is a mother of one and a stage II cervical cancer survivor. New to Cervivor, Rachel hopes to connect with others as well as serve as an advocate in the ongoing battle against cancer.
Health equity must be pursued relentlessly in communities of color including the Black community to address long-standing disparities and ensure the well-being of every individual. Achieving health equity includes dismantling systemic barriers, such as discriminatory practices, unequal access to quality healthcare, and socioeconomic inequities that disproportionately impact Black individuals.
Here are a few holidays and awareness campaigns to share with your networks during the month of June:
Juneteenth Also known as Freedom Day or Emancipation Day, is an annual celebration observed on June 19th to commemorate the emancipation of enslaved African Americans in the United States. Originating in Galveston, Texas, in 1865, Juneteenth marks the day when Union General Gordon Granger arrived with the news of freedom, proclaiming the end of slavery in Texas, two years after the Emancipation Proclamation was signed. It has since become a significant cultural and historical milestone, symbolizing the triumph of freedom over oppression and serving as a reminder of the ongoing pursuit of equality and justice for all.
Caribbean American Heritage Month Celebrated annually in June, is a time dedicated to recognizing and celebrating the rich contributions and vibrant cultures of Caribbean Americans in the United States. In conjunction with this important observance, it is crucial to shed light on significant health issues that affect the Caribbean American community, such as cervical cancer. Cervical cancer is a leading cause of cancer-related deaths among women in the Caribbean and Caribbean American populations. During this month, we’re raising awareness about the importance of regular screenings, early detection, and prevention strategies to combat cervical cancer and promote women’s health in the Caribbean American community. We can empower individuals to take proactive steps toward a healthier future.
National Black Family Cancer Awareness Week An important week-long observance that aims to shed light on the disproportionate impact of cancer on the Black community and raise awareness about prevention, early detection, and treatment options. By addressing disparities in healthcare access and providing support networks, this initiative plays a crucial role in fostering resilience, advocating for equitable care, and ultimately working towards eliminating cancer-related disparities among Black families.
By implementing culturally sensitive care, increasing healthcare access and affordability, and prioritizing community empowerment including sharing personal stories, we can foster a future where every person in the community enjoys equitable opportunities for their best health and is free from the burden of historical injustices.
Are you a cervical cancer patient or survivor? Add your story to our Cervivor Stories and help spread awareness of cervical cancer! Your story has the power to create change and it matters.
It’s officially Pride Month so let’s talk about it, embracing inclusivity.
Language has the ability to shape our perceptions, build understanding, and foster a world where everyone feels seen, respected, and celebrated. By using inclusive terms and adopting inclusive language, we can create an environment where people of all gender identities and sexual orientations can express themselves authentically without fear of judgment.
Remember, words like “cisgender,” “non-binary,” “genderqueer,” “pansexual,” and “asexual” hold immense significance by validating and honoring the diverse experiences and identities within the LGBTQIA+ spectrum. Let’s educate ourselves and others, not just on pronouns but on the beautiful tapestry of identities that exist. By doing so, we pave the way for a world that embraces and celebrates the full spectrum of human diversity.
Cancer disparities within the LGBTQIA+ community are a pressing concern that demands attention. Multiple factors contribute to these disparities, including social determinants of health, limited access to healthcare services, and unique behavioral risk factors. LGBTQIA+ individuals often face discrimination and stigma, which can lead to higher rates of tobacco and alcohol use, as well as mental health challenges.
Additionally, inadequate healthcare coverage and cultural insensitivity can create barriers to early detection, prevention, and timely treatment. Addressing cancer disparities in the LGBTQIA+ community requires comprehensive efforts, including targeted outreach, education, and policy changes to ensure equitable access to healthcare services and reduce the burden of cancer in this marginalized population.
Cervical cancer poses a significant health concern for individuals within the LGBTQIA+ community, highlighting the importance of inclusive and comprehensive healthcare practices to address the unique needs and experiences of all individuals, regardless of their sexual orientation or gender identity.
We encourage and support individuals who identify as LGBTQIA+ to share their stories. Each personal narrative has the power to create empathy, break down stereotypes, and change the future to reflect the change we want to see.
We are Cervivor and we want you to know that you are never alone. Your story matters!
During this National Cancer Survivors Month, Cervivor celebrates each and every one of you who has been impacted by a cancer diagnosis. This month, we come together as a community to celebrate your resilience, strength, and unwavering spirit despite the obstacles and challenges you’ve faced and may still be facing.
As cancer survivors, our journeys have been marked by countless moments of fear, uncertainty, and pain – one that has tested your physical, emotional, and mental limits. It’s no surprise that we rely on hope, determination, and community to uplift, support, and empower us all to continue our day-to-day lives. This community reminds us that there is always light even in the darkest of times.
Let this month be a reminder that cancer does not define you. It is a part of your story, but it does not diminish your worth or limit your potential because…
Your stories both individually and as a collective, have ignited hope in the hearts of others facing their diagnosis and treatment of cancer, and your unwavering optimism has shown us that the human spirit is indomitable.
This community has shown us what it means to truly live – to cherish every waking moment, to find joy in the simplest of things, and to appreciate the beauty of life.
Your resilience has taught others to value their health, relationships, and the precious moments we often take for granted.
We also recognize the impact each of you has on the future of cancer care, research, policy, treatments, health equity, and so much more.
You have become a community of support, advocates, caregivers, and beacons of hope for those who are still fighting.
Let us continue to raise awareness, and promote early detection and vaccination to prevent cervical cancer and other HPV-related cancers. Keep shining your light, continue to inspire others, and know that you are never alone in this journey.
Happy National Cancer Survivors Month!
Are you sharing your story?
If you haven’t yet, add your story to our Cervivor Stories. Write a blog post about your experience, your advocacy, a milestone, or simply a memory or reflection, and send it to [email protected]. We can publish it, add it to the patient voice, and reach of our Cervivor blog.
Two years ago, my husband and I received the devastating news that I had been diagnosed with cervical cancer. At the time, the mere mention of the word “cancer” was enough to send us into a state of panic. To cope with the fear and uncertainty, we came up with a unique way of talking about my diagnosis: we referred to it as “a pudding.”
This simple act of renaming the disease allowed us to talk about it more openly, without being overwhelmed by fear. We could discuss my treatments, prognosis, and how we were feeling without feeling like the weight of the world was on our shoulders. I used this little cute pudding emoji when I texted someone about it, and encouraged some of my close friends to do the same.
As the months went by, we faced numerous challenges and struggles, from painful treatments to emotional turmoil. But with the support of family, friends, and a dedicated medical team, we slowly but surely found the strength to keep fighting. Over time, our outlook on life changed as we learned to embrace each day and live in the moment.
Fast-forward two years, one of my friends texted me saying “how is your pudding?”, and this was when I realized that the word “pudding” is no longer a part of our vocabulary; we can now say “cancer” without fear or hesitation. My husband didn’t even remember the fact that we used to call it a pudding. This represents a major shift in our mindset and how we perceive the disease. We have learned to accept the reality of my diagnosis and move forward with it. We have come to understand that cancer is just a word, and it does not define who we are or what our future holds, although I also feel like cancer is now a big part of my life in both good and bad ways.
This journey has been incredibly difficult, but it has also taught us so much about ourselves and life. We have learned that it’s okay to be afraid, and it’s also important to face our fears and embrace the journey. By being open and honest about our experiences, we hope to inspire others who may be going through a similar situation and help them overcome their fears and pains.
In conclusion, our journey from “pudding” to acceptance has been a powerful reminder that we are strong, bonded and we get through difficulties together. By embracing the reality of my diagnosis and focusing on one thing at a time, we have found the strength and resilience to overcome the difficult situation and move forward with hope. I am currently facing issues with my body due to side effects from cancer treatments, and those sometimes make me feel like I am mentally not well, but one thing we know is I will feel better again. We will get through this. I am now much more confident and have more faith in myself.
Survivor & Caregiver
Looking back over the past two years, time and patience were the most important things in this process of moving forward. In my darkest moments, I turned to a support group of fellow cancer survivors, Cervivor, who provided me with comfort, encouragement, and a sense of community. I am amazed by the resilience of these individuals, who have gone through similar experiences and come out on the other side. Their stories gave us the courage to keep moving forward, even on our toughest days. This is why I am writing this blog post, hoping to give a ray of hope for anyone who is currently suffering. I will continue to tell my story as a way to inspire others and to remind you that you are not alone.
Anna was born and raised in Japan and came to the U.S. in 2015. After she survived cervical cancer in 2021, she became a Cervivor School graduate in 2022. She is a business development professional working for a Japanese corporation. She currently lives in Washington state with her husband and their fur babies. In her spare time, she enjoys gardening, cooking and watching shows & movies. She is passionate about fostering dogs to give them a second chance.
May is Asian American Pacific Islander Month! As we continue to celebrate, check out this interview between Cervivor Ambassador and Cervivor Japan Liaison, Anna Ogo, and Ms. Michiyo Namba from Japan. Anna met Michiyo through Tamika Felder, Founder & Chief Visionary of Cervivor during Cervivor School Nashville. In this article, Michiyo shares her story with cervical cancer and the challenges the Japanese community face with this disease.
Anna: Can you start by telling us a little more about yourself?
Michiyo: My name is Michiyo Namba, President of Think Pearl. I started my own PR and event casting company for women when I was 29 years old, got married at 31, and had a baby at 33. In 2009, I was diagnosed with cervical cancer at 36 years old. I wish I had known more about cervical cancer, vaccines, and screening before I got cancer; and this was my reason I started an organization called Think Pearl. That was right before my hysterectomy surgery in December of the same year, 14 years ago. Our mission is to make everyone healthier and happier both physically and mentally, through our education and advocacy on cancer prevention and women’s health including cervical cancer awareness.
Anna: Tell me about your cancer journey in Japan. How does your story begin? How did you feel about your diagnosis?
Michiyo: In the summer of 2009, I had a routine pap test, which came out abnormal. I had no symptoms at that time. In January 2010, I underwent a radical hysterectomy, and it was confirmed that I had stage 1A1 cervical cancer. I had the option of preserving my uterus, but I chose to have a hysterectomy because of the size of my tumor. I immediately thought “Cancer = death” as I didn’t have any knowledge about it. I asked a friend of mine, who was a gynecologist, for explanations about my diagnosis, which helped to sort out my feelings. As I researched cervical cancer more, I learned that this disease was not uncommon, and it didn’t make sense to me that I had never heard of this disease before.
Anna: How did you share the news with your family and friends? What was their response and what kind of support did you have?
Michiyo: I informed my family and friends after I had come to terms with the situation. It was reassuring to hear that they would support me no matter what happened during treatment, as long as my life was not in danger. The doctor had told me that I could continue with my usual routine until the surgery, which made me feel conflicted. However, my family and friends were there for me as usual, and their constant presence made it easier for me to share my troubles without feeling like a burden.
Anna: Can you share with us about your treatment?What were the most difficult things?How are you doing now? Has your life changed after treatment?
Michiyo: I underwent a radical hysterectomy and was hospitalized for three weeks (which is longer than the current average for this procedure at the time of my surgery in 2009). I did not undergo any other treatments, such as chemotherapy or radiation. Realizing that people can die young and unexpectedly and that the risk of death can be so close, was the most difficult and challenging aspect for me. It has been about 14 years since my surgery, and I am in remission. There were not many physical changes in my daily life. However, my perspective on life has changed as I feel like I have been given a second chance, and I want to contribute to society in any way I can.
Michiyo: In 2020, the World Health Organization (WHO) announced a global strategy to eliminate cervical cancer and an event was held on November 17 each year to light up landmarks around the world in the teal blue color associated with cervical cancer elimination efforts. The event was organized by WHO, and it was first held in Kyoto in 2020. In 2021, the Teal Blue Japan campaign was launched nationwide to promote cervical cancer screening and to improve understanding of the proper knowledge about the HPV vaccine in cooperation with local communities. The campaign is hosted by Think Pearl, but doctors and physicians across Japan are actively working on educating and raising awareness in their respective communities. The success of the campaign is due to the support and contributions of like-minded individuals who believe that doing good for society is important, rather than just the know-how of organizing campaigns, which is the core business of Think Pearl.
Teal Blue TokyoTeal Blue Osaka
Anna: What challenges do you see regarding cervical cancer in Japan?What would you like to see for the future of cervical cancer in Japan?
Michiyo: In order to make impactful communication, I believe that all stakeholders, including the government, education, healthcare, and media, need to work together. While each is working to improve the situation in their own position, it seems that information has not yet reached people all over Japan. Everyone has knowledge about cervical cancer and its risks, and everyone is properly informed about the choice of getting vaccinated against HPV.
Anna: Looking back at your cancer journey, what are some of the cultural obstacles you had to overcome?What advice do you have for other women diagnosed with cancer in Japan?
Michiyo: Since the primary cause of cervical cancer is the HPV infection and that is related to sex, I think that stigma towards sex are similarly present in many cultures and maybe cannot be erased. However, in Japan, we have various projects in progress to promote cervical cancer prevention, early detection, and so on, and to implement those systems into society and educational systems. I believe that if we continue to progress in this direction, we can definitely overcome these barriers. In Japan, there are many fellow cancer survivors around you, even if you don’t know it. I think there may be times during treatment when it is very difficult and you feel hopeless. However, I hope you won’t hesitate to rely on those around you and ask for help. Japan has some of the world’s best treatment options available. Trust in reliable medical professionals, take your time and try to find happiness in even the smallest things every day.
Cervivor would like to extend our deepest gratitude to Michiyo for sharing her cervical cancer journey from patient to advocate with us and to Anna for her dedication to bringing more awareness globally to cervical cancer awareness and prevention.
Cancer gives us a new vocabulary. Some words and phrases we embrace and some just do not resonate with us. We asked our Cervivor community to share a word or phrase that they find or found challenging to hear during and after cervical cancer treatment.
Just saying or writing the word ‘cancer’ hurts so much. ~ Marlene B
There was a resounding, collective group sigh at the phrase “new normal”. Nothing about cancer is normal and the ability to go back or to regain any sense of BC (before cancer) normalcy is completely unattainable. Treatment may end, surgery is done but we live with life-long physical and emotional side effects that you just do not ‘get over’. As Anne Z says, “Cancer is something I just have to deal with”.
“You don’t look sick”
This hosts a multitude of triggers for those living with both acute and chronic illness. It’s taken me years to learn how to unpack (to recognize why I react) and respond authentically to this one… yet can still really hurt emotionally. To everyone here, you are seen… even if the illness or situation is not. ~ Lori S
“You look good”
Although I know it comes from a good place, I hate when people say ‘you look good’ knowing I don’t look anything like I did before my third diagnosis. I am not sure why it bothers me so much but I always smile and say ‘thanks’. I also cannot stand when people say, ‘I don’t know how you do it’… like what was I suppose to do, give up? I wish they could just simply say, ‘I admire your strength’. ~ Jenn M
“You got this”
I think I prefer the statement, ‘I’ve got you’ as it comes across as more supportive. ~ Hilary B
“Preventable”
This word really stings for me. This is truly just my hang up because of my situation but I completely understand and agree with why it’s used now. For me though, it gives me chills because it makes me feel like if I would’ve done something different I wouldn’t have cancer. It just stings because the HPV vaccine wasn’t an option for me (I’m too old) and I have had my screenings religiously every three years since I was 18. ~ Tammy S
“Only”
Like, it’s ‘only surgery’ or it’s ‘only stage __’. It can come from anyone but it especially stings when it comes from fellow Cervivors. This cancer is life changing, brutal and leaves us with awful after effects no matter the stage or treatments. It makes you feel like you’re viewed as a lesser cancer patient. ~ Elizabeth A
“Incurable”
I have put zero stock in this word since I first heard it. Fact is I’m living with cancer not dying from it and I have a lot of living left to do. ~ Christy C
“They lost their battle” or “They beat cancer”
I don’t think it’s a competition and no one wins or loses. I chose to say ‘I’m surviving cancer.’ ~ Carol L
I hate thinking about people losing… ~ Jessica S
When someone says this, it always makes me cringe. ~ Brooke W
“Move on”
Don’t you think I know that already? It’s a process that takes time to heal both physically and mentally. ~ Anna O
People who have maybe not gone through or cared for a loved one with cancer, often have well-intended but somewhat off-putting comments that many of us struggle to accept. We smile, accepting these ill-fitting words, as we know they come from a place of kindness and concern, but we hope that others can be more mindful when speaking to cancer patients and survivors. Or perhaps chose to say nothing and simply offer your hand to hold — this speaks volumes.
I am a daughter of women. And in my little world, it was my grandmothers and my great-aunts, along with my mom, who shaped my early years with their unconditional love, kindness and most of all their joy. They were a consistent presence in my young life when nothing else was. As I grew up, and especially when I found myself in the cervical cancer world, their words became the armor I wore to take on whatever the world tossed my way.
This Mother’s Day, we want to celebrate how we have been transformed by the women in our lives. Our mothers, grandmothers, aunties — these are women who made a lasting impact on who we have become. Our community members reflected on what their family matriarchs bestowed upon them and how that guides you today. You shared your heartfelt memories and they really spoke to how diverse the celebration of Mother’s Day can be.
“My dear mother passed away in August 2020, just five months after her 100th birthday. Her spirit has kept me going throughout the cancer journey. I can imagine if she were here, watching me through this past year, she would encourage me with expressions of faith and determination. As she frequently pointed out when I was growing up, ‘You are a child of God and, if He marks the fall of even one sparrow, how could He not keep up with you?’ She modeled how to thrive through troubles, with head unbowed, hear unbroken and soul unbothered. I am made better for it.”
“At the end of my grandma’s life, she was suffering from macular degeneration, Parkinson’s disease and Lewy body dementia. We knew she was about to pass so I went to visit her to say goodbye. When I walked in and held her hand, she said, ‘Annie’. She hadn’t spoken in weeks! I told her how much I loved her, how much I knew she loved me and that she had always been my champion. I’ve been thinking of her a lot lately. I’m trying to raise my girls to be strong, kind, intelligent women. May we all have strong women in our lives, championing and cheering us on.”
“After my father passed away when I was 11, I was left with frustration and also confused. I was a ‘Daddy’s girl’ and I was hurt. My mother stepped in and nurtured the pain that I carried and allowed me to become a strong, resilient fighter. When I became a mom, I wanted to share those same strengths with my children. And my children have taught me to hope, dream and love. They have taught me more than I believe I’ve taught them at times. Their blind faith reminds me that I can love even when I’m hurt, mistakes do not have to be your defining moments, and your next levels are created by your desire to see your end result.”
My best piece of advice from my mother reflects my own parenting style: “Happy, Healthy, Alive”. My mother often commented how happy I was, and shared that she prayed that I would always be so happy in life. I want Chayton, our Cervivor Baby, to know that he is loved. I grew up in a huge family, but also had a lot of close family friends that were a part of my village, and I love that my son has that too. There is so much pressure in life to cross all of the “successful” things off a list. But we often forget the pure joy of living a well-lived life.
Let’s take a moment to remember and thank our loved ones for bestowing unwavering love, guidance and wisdom upon us. We treasure our memories of these women who gave us grace and strength. Perhaps we are missing our special person today but we can keep them in our hearts forever, and carry their light within us as we move through life. We also have the compassion and kindness of this resilient Cervivor community that we can turn to when we need to be uplifted.
Carol Lacey is our Lead Cervivor Ambassador and 2020 Cervivor Champion. She wants to thank her mother, Margie, for loving her fiercely. Read or watch Carol’s Cervivor Story.
Both my parents immigrated from Thailand at a young age; met, fell in love, and had me. My grandmother and aunt moved from Thailand to Southern California, a completely foreign land, to help raise me while my parents strived to obtain their American Dream. Even though I was an American kid who listened to News Kids on the Block on the radio, I was still a traditional Asian daughter removing my shoes before entering my home and eating delicious home-cooked Chinese meals. Not only was I physically raised in the Asian culture, but I also absorbed all the traditional Asian characteristics as well.
I was taught to follow strict directions, strive for perfection, and above all conceal my emotions. When you are fortunate enough to be born with the “crying mole”, a beauty mark beneath my right eye, you are taught always to withhold your emotions and tears. No matter how large the cut, or how much disappointment I felt for failing a test I was taught not to display any emotion. I know this might sound like a harsh way to raise a child, but crying and showing emotion was a sign of weakness in my family. My family wanted me to grow up to be a strong, independent woman while honoring my heritage and culture.
My strength was first tested when I was diagnosed with HPV at 18. I was a confused hormonal teenager and couldn’t comprehend what was happening. My world was turned upside down and the worse part was I was alone. I couldn’t tell my parents for fear that I would disappoint them. I couldn’t call my friends because I didn’t know what to say. I sat in my truck alone, with the phone in my hand, listening to the dial tone and suddenly tears came gushing out. But somehow, the memory of when I fell off my bike and the sound of my aunt’s voice telling me, “You can choose to sit here and cry or you can clean yourself off and do something about it.” I chose to do something. I quickly started to research HPV at the university library. I needed to understand what was IN me, how did I get it and what could I do about it. I was shocked to learn what my doctor told me was a “minor instance” of HPV could be linked to cervical cancer. I immediately called my doctor and started the process of advocating for myself. I called and called until I got a second opinion from another OBGYN who confirmed that I had cervical dysplasia (CIN III).
Life seemed to continue for me. I fell in love, graduated with a degree in English Literature, and got in engaged. A few weeks before walking down the aisle I received a call from my OBGYN that tested my strength yet again. My stubborn HPV decided to come back to life and I was diagnosed with 1A1 cervical cancer. In her calming voice, she said “You’re going to be ok. You did everything right, and we caught this very early.” I cried and through my tears explained that I was getting married in a few weeks. I remember the long pause in her voice as she took a deep breath and said “This is not going to take away your happiness, you go walk down that aisle and get married. Go on your honeymoon, and when you get back, we’re going to take care of you. Don’t let this stop you from living your life.” I got off the phone and cried as my fiancé held me until I fell asleep. I followed my doctor’s orders, hid the pain and fears, and got married on August 19th, 2006. And she was right, it was one of the happiest days of my life.
I truly thought that I overcame the biggest obstacle in my life, surviving cancer, but I was wrong. My husband and I tried for years to have a child. We suffered miscarriages after miscarriages and failed infertility treatments. It was painful every time we got a pregnancy announcement from friends and family. I remember hiding my pain as I congratulated all my friends when I held their newborn children. I wanted a family of my own, but because of the various surgical procedures due to the HPV and cervical cancer, it was difficult. Finally, after years of trying we found out that we were pregnant. I was overjoyed! I knew from the start that even though I got pregnant carrying my baby to full-term was the ultimate battle.
At the start of the second trimester, my cervix (which was nearly gone) was “shrinking” and I was rushed into surgery to insert a cerclage to help keep my cervix closed. I was terrified. I could lose the baby I had wanted for so long. After the surgery, I was placed on modified bed rest, which consisted of coming downstairs once a day, only getting up to go to the bathroom and get food, but mainly off my feet. I told the doctor I would do whatever it took to keep my baby safe. I was hopeful that by restricting my movement for the second trimester I would be rewarded with the freedom in the third trimester.
Unfortunately, that was not the case. At the start of the third trimester, I was placed on full bed rest, only allowed to get up to go to the bathroom and shower once a day, and back to laying down on the bed. For two months I laid on my bed, holding back all the emotions I was feeling, in fear that I would lose the only strength I had left to keep my daughter safe. Finally, at the 30th week, the doctors felt that it was safe to remove the cerclage and release me from bed rest. I was FREE! I could finally see and feel my toes, I could feel the sunlight on my face and see the world again. But the best news, my daughter was safe. My daughter, Samantha Reagan Paguio was born on January 15th, 2013 in style, three days after her due date.
I know my upbringing to some, might seem cold, restrictive, and harsh, but I am thankful for the matriarchs in my family: my mom, my Ama (grandmother), and my aunt. Their wisdom and traditional ways taught me how to harness my strength when I desperately needed it. Without them and their lessons, I would not be who I am today: a book editor, a mom, a friend, a wife, a daughter, and a Cervivor.
Joslyn Paguiograduated from the University of California, Riverside with a BA in Literature. She is currently a Senior Acquisitions Editor at Elsevier, overseeing the Neuroscience and Psychology book list. Since being diagnosed at 18 with HPV and then cervical cancer, with multiple recurrences, she has dedicated herself to educating others and advocating for the HPV vaccine. She is currently hosting a monthly podcast for Cervivor, interviewing cervical cancer patients and survivors, and addressing issues they face. During her spare time, she enjoys reading, cooking, and traveling with her family.
One cervical cancer survivor sat down with Cervivor to share her story, how she navigated infertility, and what that looked like for her journey.
Can you tell us a little bit about your age and what your diagnosis was?
I was diagnosed with clear-cell cervical cancer when I was 24. This was ten years after being diagnosed with an unrelated childhood cancer, Hodgkins Lymphoma. You think you get hit once and it won’t happen again, but boy was I wrong. My oncologist said that the cervical cancer diagnosis was so rare, they were unsure of how I got it.
What did treatment look like for you?
I was given a couple of options for treatment. I had just gotten engaged several weeks earlier, so that definitely influenced my decision for treatment.
My first option was to get a hysterectomy, totally remove my uterus, but leave my ovaries to preserve my fertility and hormone function. This was the option most of my doctors recommended to treat this type of aggressive cancer. They said I would possibly need radiation after depending on what they found when they went in.
The second option was to go through chemotherapy and possibly radiation to shrink the tumor, and then have a surgical intervention, a trachelectomy, to remove my cervix and the tumor. The doctors said that during this surgery if cancer margins were not met, I may have to get a hysterectomy. They also were unsure if the chemo would even work since this cancer was rare and aggressive.
I ended up choosing the first option and I underwent a vertical (open, not laparoscopic) hysterectomy, and they moved my ovaries up, out of the field of radiation to preserve my fertility. Prior to this surgery, the doctors allowed me to delay a couple of months so that I could go through an egg retrieval and freeze my eggs.
How did you learn that you were going to be faced with infertility?
Upon diagnosis, it was pretty clear that I would have some sort of infertility, either no uterus, or no cervix depending on the treatment option I went forward with.
I will say, that after processing and going through all this, I (or we as a couple) knew going into family planning that we would have challenges and would either have to adopt or use a surrogate. 1 in 4 couples go through infertility and they have working ‘parts’. I always said that at least we kind of knew going in vs. trying for a year or more and then having to seek out help from fertility doctors. We knew and were able to prepare ourselves for this process.
What did you do to help yourself through those emotions?
My fiancé and my family were really my emotional soundboards at the time. I did a lot of crying. I tried to get out of the house and just ‘forget’ for a little bit. At the time I was working in healthcare with women going through high-risk pregnancies, and that was really hard to be around. I had some time off of work, which definitely helped clear my head. The hikes, walks, friends, and family really kept me going.
Is there anything you would want anyone else facing these emotions to know?
You are not alone. It sounds cliche, but you are not. I actually recently spoke to a young single woman who has to have a hysterectomy for medical reasons too and we shared our stories and our journeys and it was just nice to connect with someone who understands exactly what you are dealing with.
Reach out to local organizations, or even your doctor as they may know other patients who are open and willing to share and connect!
I will also say, to ask your doctor about the pros and consequences of any treatment or decisions you make. I froze my eggs soon before surgery, to be able to use them later on. Nobody encouraged us to freeze embryos instead, which have a much higher rate of survival after thaw. The focus then was on the cancer and it was very rushed. That is a whole other story too, but had all that been transparent, our course of action, and chances of starting our family earlier/differently, would have been altered. When I spoke to my doctor about this after the fact, she made a point that she as an oncologist was acting to save my life and treat the cancer, they didn’t think about the after and the long-term issues or effects on my fertility.
Can you share where you’re at in your journey now?
Thank God I have been cancer free for over four years. I have since gotten married, and we are so blessed to have welcomed our first child into the world via an amazing surrogate. This was not an easy process, but we are so grateful to her and her family for putting their lives on hold so we could start our family. There were so many bumps and decisions along the way; picking an agency to work with or to go ‘independent’ and find our own surrogate, matching with her, all the legalities that we had to go through, emotions, failed treatments, rude comments, time waiting, and the stress and emotional toll of not carrying my own child. I could talk for hours about that all, but with the grace of God, we did it! When they say it takes a village to raise a child, I would say it also does to bring one into this world.
Read more Cervivor stories like this one on our website here. Are you a cervical cancer patient or survivor? Share your story with us today!
This week is observed as National Minority Cancer Awareness Week and we’ll be highlighting Cervivor community members that identify within this population. Cervical cancer survivor and patient advocate, Tiera Wade shares the inspiration behind her journey with her small business.
“Traditionally, waist beads have been worn in West African culture for various reasons. Some of those reasons are adornment, accountability, spirituality, and honoring the power our wombs hold.
My reasons started to be intentional with expanding my family in hopes of having another child. As a small business owner, I started to incorporate this intentional art of making waist beads into my business. In that process, I connected with other women looking for healing, grounding, mindfulness, and acceptance.
When I found out I had cervical cancer all of the love, time, and intent, I soon felt betrayed. This womb that I was honoring and loving was now trying to kill me. I cut off every single one of those 28 strands and prepared for treatment.
Shortly after starting treatment, I received a package in the mail, and this package contained a strand from another maker across the country. My waist bead sister sent a note with her handmade strand, “This too shall pass.”
A few days later, I would receive another one and another. This continued throughout my treatments. When I was declared NED (no evidence of disease). I took those waist beads that were created in and with love and tied them on my waist. Each strand as gentle reminders that I’m loved and thanking my womb for a job well done, and she could rest.
Today, as a survivor, I use waist beads now to educate others. I share my why and Cervivors message. Telling them to prioritize themselves, love their bodies in the journey, and their health.”
Tiera Wade is a cervical cancer survivor and thriver turned patient advocate. She resides in the great state of Ohio and she is a small business owner and artisan designer of Set Trendz where she encourages others to be bold and be different.
Today, we’re raising a toast to our Founder and Chief Visionary, Tamika Felder. It’s been 22 years since Tamika Felder heard those devastating words, “You have cervical cancer.”
It was a moment that changed her life forever. Tamika was 25 years old and budding in her fast-paced career as a Washington D.C. news producer. She wasn’t expecting a slowdown, more importantly, a cancer diagnosis.
Tamika endured a hysterectomy followed by chemotherapy and radiation that ultimately stripped her of her fertility. After experiencing frustration, pain, and grief, she spent countless hours researching the human papillomavirus (HPV). What she found was how common the virus was and that there was a necessity for others to talk about it. She sought others who have walked the same journey but what she found was the shame, stigma, and isolation that cervical cancer brought with it. Tamika wanted to change the narrative and empower others to tell their stories so created what she didn’t have.
In 2005, Tamika and Friends, Inc., a nonprofit dedicated to cervical cancer survivors and their friends and family was born. Support became an all-encompassing demand and she found the more she told her story, the more it reached other women. Several house parties were hosted to have real-time conversations about cervical health, cervical cancer, and how to protect yourself. Eventually, that idea became an official program of the organization we now know as Cervivor, Inc.
Tamika understood there was a calling of living her life beyond a cervical cancer diagnosis and over the years, she has continued to transform the lives of each person impacted by a cervical cancer diagnosis. She not only empowers them to use their voice, but she teaches them that their pain can have a purpose and that they have the power to create real change.
Tamika has been a visionary and a trailblazer not only in the cervical cancer space but to open up the dialogue to talk about women’s health, sexual health, health disparities, and what it means to strive for better access to and care for all – and now, the path to parenthood for those facing infertility.
We are in awe of everything she has endured, built, and nurtured, and can’t wait to see what else blossoms in her lifetime. We couldn’t be more grateful for her resilience and leadership to create the community we now know as Cervivor. Thank you, Tamika!
Join us in celebrating Tamika today by scheduling your routine cancer screenings and vaccination appointments, sharing this blog and her story with your networks, and by donating $22 to Cervivor!
It seems so surreal to be celebrating another work anniversary with Cervivor. Another year of incredible awareness initiatives, advocacy, education, and outreach plus community support for cervical cancer and HPV-related cancer patients, survivors, and thrivers. If you’re new here, please take a moment and read my introductory blog “Hi, I’m Morgan!” and my “One Year At Cervivor Taught Me” reflection post to bring you up to speed.
I started my cancer journey at 24 years old at a time when I was just getting my footing in my adult life, in my career as a dental assistant, and setting myself up for a bright future ahead. But life has a funny way of placing a wrench right in the middle of those plans we all carefully curate. I wouldn’t face just one cervical cancer diagnosis, but I would be thrown into the arena once again to face a metastatic recurrence in my lungs. I spent the greater part of two years just trying to survive. It was a grave reminder of how truly precious our time is here.
I’m now standing 8 years out from that initial diagnosis with 7 of them being declared with no evidence of disease. I’ve been reflecting on everything I’ve been through and what I’ve been able to accomplish since then: the end of treatment, starting a Bachelor’s program just two weeks after completing chemotherapy; volunteering as a Cervivor Ambassador and patient advocate for so many organizations in my home state and beyond; all the way to getting my own apartment again, graduating with a Master’s degree, and landing a position with the organization that strengthened my voice.
Over the course of the last two years, I’ve been learning and defining my role as the Community Engagement Liaison, as a nonprofit professional, and as a patient advocate. It has been a whirlwind of emotions supporting our community, from celebration to the unexpected and inevitable hits – you know, the bad follow-up scans, unexpected treatment side effects, recurrences, and unbearable losses. Cervical cancer is not an easy cancer. There are all of these additional layers of trauma thrown into the mix and it can be hard to articulate everything to those who haven’t set foot in our shoes. But we try. It’s not until we’ve met someone who has been through it and can say, “I have been there,” and “You’ve got this!” that you truly feel heard, accepted, and safe. I know because it happened that way for me too.
Through it all, we continue to support each other as a community and our mission continues to drive the work we do every single day. Part of that is making sure that no other patient or survivor feels alone like so many of us have. I am reminded of the day I was diagnosed with cervical cancer every time a new request comes into our Comfort Care & Compassion program. I replay what I felt and I put that energy into the love, support, and personalization of that package.
I am also reminded of my own diagnosis when another woman posts in our private group to share that her cancer is back. It can be heavy to see that over and over again but it only drives my purpose as a community support even further. It empowers me to be brave for others and do important work by reaching out to those who provide care for our community members. In doing so, I’ve been able to build and nurture partnerships like the one with the University of Alabama Birmingham (UAB) and Dr. Christina Wilson. Together we came up with a sexual health and support bag for those going through internal radiation – a little privacy bag for dilators and a business card linking to our support resources here at Cervivor. To hear the feedback from real patients has been truly empowering that we’re doing something meaningful and impactful through this partnership.
Every time a woman has her ‘ah-ha’ moment through one of our various programming events, it catapults me back to the moment I set foot into a Cervivor School for the very first time. Standing up and speaking at a Cervical Cancer Summit, Cervivor School, or HPV Survivors School, I am in shock and awe that I was in the attendees’ seats only a handful of years ago. It keeps me feeling humble but it’s a great reminder because we are often told just how important our stories are. There is so much truth in that statement because the sharing of our personal stories continues to grow in our outreach across the globe.
2023 is an opportunity to keep learning, growing, and experiencing new things as an individual, community, and organization. One of my favorite parts of this job is getting to know others and their stories – no matter where they’re at in life. To see the uplifting support firsthand from our community members and just how one little “You’ve got this” message isn’t so little at all. Those are the things that drive this community to be who we are today. We are Cervivor.
I cannot wait to see the expansion of Cervivor, Inc.’s mission even more. It is simple yet impactful and effective: We share our stories to create the change we want to see in this world and in this lifetime. We want to see those who are impacted by cervical cancer to feel empowered and supported because no one should have to ever walk this journey alone.
I know I want cervical cancer to be a thing of the past for our upcoming generations and I believe we can do this. I love to get to know others and the work they are doing in the cervical cancer and HPV-related cancer space! Connect with me on LinkedIn or send Team Cervivor an email at [email protected].
Morgan Newman, MSW, Outside of her Community Engagement Liaison position at Cervivor, you can find Morgan nurturing her relationships with local community partner organizations like the American Cancer Society Cancer Action Network (ACSCAN), the Iowa Cancer Consortium, and serving as a board member for Above and Beyond Cancer. Learn more about Morgan at Cervivor.org.
A little background on me. I’m Lindsay and I’m a Jersey Gal, originally born and raised. My three girls and I moved to Richmond, VA, where I met my husband in a Criminal Justice class (and he’s seven years my junior) and together we had a girl and our first and only boy. I am currently working as a One-on-One in Gaston County for the Department of Exceptional Children by way of Support, Inc. and I absolutely LOVE what I do!
Now let me jump into how I got here… a cervical cancer survivor and advocate.
It all started with bleeding. A lot of bleeding.
I have always been a regular period gal, like clockwork every 28 days, something I could count on (except when I was pregnant of course) and something I never worried about. So naturally, I was alarmed when I suddenly started bleeding irregularly. But my normal period soon came.
One day after being intimate with my husband, I started to bleed.. a lot. I didn’t think much of it and I just figured that maybe that month my period decided to stay a little longer. But a few days later, I started to bleed again. Now, I am really alarmed so I went to the ER where they told me they didn’t see anything wrong and it was normal.
The next month the same thing happened. Only this time there were clots and it was random and more frequent, to the point I ended up wearing pads all day every day because I never knew when I was gonna bleed. There were days I would be sitting on the toilet for 45 minutes bleeding.
I went to my general doctor and I also scheduled an appointment with my gynecologist. As I was explaining everything to my doctor, I jokingly asked if I was getting close to menopause. I really thought this was happening because I was turning 45 and thought maybe my period was ending. She told me I wasn’t in menopause range and she tested me for hyperthyroidism which came back positive for Graves Disease.
I was sent to an Endocrinologist and was put on meds for Graves Disease but I was still bleeding. When I finally got to the gynecologist, who was beyond rude, he completely cut me off and was writing me a prescription for birth control pills! I told him I didn’t need to regulate my period and that there obviously something else.
He did an exam and told me that my cervix felt enlarged and abnormal and he was sending me for further scans and the Pap results would take seven days. During this waiting period, I received notifications that my chart had new test results and I saw alarming things like “mass” “HPV” but I hadn’t been contacted by the doctor yet. After a very long two weeks, I finally got back in to see him and he told me the bad news was that it was cervical cancer but the good news was that the Levine Cancer Institute was close and I would be in good hands. He told me to go to the window to make an appointment and he walked out. He didn’t explain my results, nothing. He showed absolutely no compassion and he didn’t even ask if I had any questions.
I got my appointment at the Levine Cancer Institute the very next day, which also happened to be my husband’s birthday. I met my oncologist, Dr. Casablanca and she explained my results to me and told me she wanted to do a biopsy right then and there but when she did, it aggravated the “mass” and that started what would turn into the worst and longest 10 days of my life in the hospital.
It was confirmed that I had Stage II cervical cancer and I was devastated.
The time in the hospital was filled with constant blood transfusions and prodding and pricking for IVs. My arms were bruised from shoulder to wrist. They had to perform so many “packing” procedures (where they put meds on the end of gauze and shove it into your vagina) that I lost count. And eventually had to start my radiation because I wouldn’t stop bleeding.
I was scared and confused and I never had time to fully grasp what was happening to me. Everything happened so fast my head was spinning. However, one thing was very clear, I had a lot to live for and whatever I had to do I was gonna do it.
I pushed everything else to the side and focused on my treatment plan which was five days of radiation a week for five weeks and five weeks of chemo, with five brachytherapy procedures. My mission in life has always been to make a difference. I have done that as a Coach, Mentor, Community Leader, Sorority Leader, and now as a One-on-One. My new mission is to bring awareness to this new world I was thrust into unexpectedly.
I wasn’t educated enough on the HPV vaccine and was against it for my children but with my newfound knowledge, I’m advocating for it, especially for my girls. I also could not crumble or lose my faith because I wanna be here for my children, for my grandchildren and I want to make sure they are here too. I am NOT MY DIAGNOSIS and I plan to be the voice for those that can no longer speak.
This year I held my first Health Fair/Pop Up Shop called “Get in Good With Your Health” to raise cervical health awareness in my community during Cervical Cancer Awareness Month. It was also to highlight other diseases and allow people to be able to take the steps to have a Healthier Mind, Body, and Spirit. The event was held on January 15, 2023, at Holly Oak Park in Shelby, NC. There were local vendors such as Hoppers Soul Food Truck, Carolyn’s Paparazzi, as well as Charlotte Vendors like Sanaa Glam & Wellness and Teal Diva. Several other vendors traveled from Georgia and NJ to be a part of this event. There was information on nutritional health, cancer awareness and prevention, and Lupus awareness. We had a spiritual reader, a Zumba Instructor, and a Yoga Instructor too. It was a wellness party!
My husband and I are both passionate about our community and both have up-and-coming businesses and the event was sponsored by Group T.H.E.R.A.P.Y, which is my mentoring group, and Concrete Mentoring Corp which is my husband’s group. It was attended by friends and family who had traveled from various states to show their support for me and my vision, as well as locals in our community. I was pleased with the turnout, especially with it being my first time doing something on this scale.
I had been pretty much in a fog during my treatments and I really hadn’t felt like myself but that weekend, with so much love and support from my family and friends, I felt more like myself and it helped me to be able to push through. Really come out of the fog and focus on not only on healing but on my purpose.
My goal is to raise awareness not only in my community but everywhere. I started here in NC and next year I plan to hold this event in three cities: Richmond, New Jersey and each year add another city until eventually there is one held in all 50 states.
This is now my new mission, to be able to tell my story and educate others where I wasn’t. It is important to be able to show people not to be afraid of the myths or stigmas surrounding this disease and how it is important to be proactive about our health and our bodies. I am NOT MY DIAGNOSIS and when I’m gone my legacy will have told my story and maybe have saved lives.
Linsday Gullatte-Lee is a self-published author, Cervivor community member and passionate advocate for cervical cancer prevention and awareness. She is on a mission to bring her Get Good with Your Health festival to every state. We’re cheering you on, Lindsay!
A Special Q&A with Kimberly Williams and Morgan Newman of Team Cervivor
Tell us about yourself. Why did you go into social work?
Kimberly: “My name is Kimberly Williams. I’m a social services worker from the greater Houston, Texas area with over 20 years of experience in the social services field as a social services worker, mentor, manager, and director emphasizing in the fair treatment, work ethic, and services provided to Individuals with Intellectual Disabilities and Related Conditions. I have a Bachelor’s Degree in Criminal Justice-Law Enforcement, a Master’s Degree of Management, and Master’s Degree of Healthcare Management. Through this experience and work with diverse populations, I work to reduce inequality gaps, ensure fair treatment, and appropriate follow-up and access to care.
Watching my parents throughout my youth I believe helped me settle into a career in social services. Although my father passed away when I was 11 years old, I watched as he was a volunteer for the United Way. I learned the importance of community, volunteering, and people being heard, understood, and helped. My daddy would and did put himself in dangerous situations to help others. My mother instilled in me that no one should be treated differently regardless of their skin color, abilities, etc. Their examples helped frame my desire to give in meaningful ways.”
Morgan: “I’m Morgan Newman and I’m a social worker located in the heart of the Midwest in Des Moines, Iowa! I’m fairly new to the social work field graduating with my Master’s degree in May of 2021 and spent most of my young adult career as a chairside dental assistant and office manager in two offices. Before that, I started working at 14 at a small ice cream shop progressing into daycare, working the front desk at a fitness center, being a barista at a coffee shop, retail, and student services.
I wanted to do something more meaningful in life. I was a dental assistant for only a few years when I knew I didn’t want to be in the field for the rest of my life. After going to therapy for the first time in my life at 23, I found my calling: a way to help others and give back to social issues like mental health. I would say that I’ve always had the urge to do this kind of work from a young age but I wasn’t sure how to articulate it. I never knew what a social worker was until I met one who inspired me to follow my dreams.”
How does the work in this organization fit your professional mission or experience?
Kimberly: “Cervivor fits me personally because I am Cervivor – I’m a cervical cancer survivor and thriver. Professionally I’ve been employed in the social services field for over 20 years working with Individuals with Intellectual Disabilities and Related conditions, their caretakers and service providers. Working in that capacity professionally has shown me how to work with people from all walks of life. Working with Individuals with Intellectual Disabilities teaches you that everyone has a voice, sometimes not audible but necessary, their voice, their thoughts, and their existence matters. I believe the Cervivor organization matches my mission which is to ensure that every voice is heard and understood.”
Morgan: “While I was back in school taking every social work, psychology, and sociology I could, I was diagnosed with cervical cancer my second semester back. My niche changed several times – from mental health to criminal justice and so forth. I knew when I was diagnosed with a metastatic recurrence to my lungs, my calling was going to be something cancer-related. Social work helped me process through the trauma I had experienced – putting words to feelings I didn’t know I was experiencing. It helped me heal and empowered me to be an advocate for others.
My instructor, Dr. Sandra McGee encouraged me to think outside the box because you could do anything as a Master in Social Work. So I dreamed about it and I grew with this Cervivor organization during my Bachelor’s and Master’s program to be where I am today. I am living the Cervivor mission statement of supporting and empowering others impacted by cervical cancer. We do that through our private group, programming, and so much more!”
What is your favorite part about your job?
Kimberly: “Learning from different people, the nuggets that you can receive from people can last you a lifetime.”
Morgan: “I am able to live in my values through the work I do with Cervivor and I get to work with people I admire. Our community works as an amazing team and we continue to empower and support each other through all the tough times but we also know how to celebrate the good times too!”
What do you look forward to seeing in the organization?
Kimberly: “I look forward to the organization expanding our footprint with diverse populations to aid in the mission of eliminating HPV-related cancers and spreading knowledge of these cancers worldwide.”
Morgan: “Witnessing the commitment of other organizations and leading professionals to end cervical cancer and seeing it put into action over the next several years. Ending cervical cancer is something we all want to see in our lifetime.”
“We need to talk. We need to have conversations about cervical cancer and prevention.“
This could have been Holly Lawson’s mantra. Once she found Cervivor, she was all in. She gained her advocacy wings and she never stopped soaring to greater heights.
Holly was a life-long teacher, knowing that people thrive when their voices have purpose and when they are armed with knowledge. During her time as Cervivor’s Community Engagement Liaison and co-administrator of Survivor Slimdown, she elevated and supported countless patients and survivors, many who had never met Holly in person but who felt a deep connection to her nonetheless. Holly was magical and her caring heart was open to all. She had a knack for captivating you with her Southern charm but her fierceness and determination was ever-present.
Holly used her Cervivor voice on Capitol Hill to make sure her state legislature heard her story of cervical cancer prevention, she shared the stage with doctors and researchers doing work in the HPV space and she was dedicated to helping others find their #CervivorSpark. Holly never stopped advocating; never stopped sharing all aspects of her cervical cancer life for others to learn from. She showed us what resilience, vulnerability, and bravery was. Holly believed in a collective voice and she believed in the power of the Cervivor community.
Today marks three years without our @CancerWrangler but we are incredibly grateful that she made the Cervivor community her home. Holly led with wit, tenacity, and a whole lot of spunk. Her laugh and sweet southern drawl still remains deeply connected to our memories of her. Holly was a shining example of how powerful moving from a patient-to-survivor-to-Cervivor can be. She was able to utilize her voice to create change and we are better because of her dedication.
We celebrate Holly’s lasting impact by never forgetting the work she, and so many others, have done to help carry Cervivor’s message far and wide. If Holly were here today, she’d be over the moon at how we’ve grown yet always knowing how far we still need to go. Our work continues because her voice, her story, is weaved into everything we do as an organization.
Just like Holly, we do this work to save lives. We do this work because our friends and our sisters, who are no longer able to speak, can STILL BE HEARD. We must never stop advocating for cervical cancer prevention because we do have the power, we are change-agents and we hold far too many stories within us that the world must KNOW.
With Cervivor, Holly lives on.
In Memoriam Holly Latrelle Lawson November 8, 1978 – March 13, 2020
My name is Kimberly Williams, I’m a recurrent cervical cancer survivor and Cervivor Patient Advocate that resides in the great state of Texas! I’m elated to join Team Cervivor as the Chief Diversity Equity and Inclusion (D.E.I.) Officer.
When I was diagnosed with cervical cancer in February 2018, it made me realize that being a mom to my two children, a double Master’s recipient in Management and Healthcare Management, and devoting 20-plus years to social services did not lessen my chance to get this diagnosis. The moment that I found out I had cervical cancer my focus shifted to desiring information concerning this disease that invaded my body.
I was introduced to Cervivor by a Cervivor Ambassador in March 2018 after my radical hysterectomy. During this time I listened, watched, and learned from other Cervivors. I faced a recurrence of cervical cancer in 2019 which led me to advocate even more! I began to share my story with those within my reach (my community, my family, and my friends). That’s when I realized that my story as a Black cervical cancer survivor mattered. There was a diverse population who were not insured or underinsured, and not receiving cervical cancer screenings, but who were listening to my story and taking action. It became a mission for me to help these communities by providing support and knowledge, and also sharing my story.
In 2021, while participating in a Cervivor event, I found my voice and drive even more. I learned how to frame my message for different audiences. This brightened my light to make a difference in the underserved communities by sharing Cervivor’s mission through my story. In January 2022, I was in shock to be given the Cervivor Rising Star award. As I accepted the award I understood there were still grassroots efforts that needed to occur to reach those aforementioned communities.
In January 2022, I participated in the Cervical Cancer Summit powered by Cervivor. During this summit participants were encouraged to join the American Cancer Society Cancer Action Network (ACSCAN) to work to impact our local communities and share our cancer stories. Based on this encouragement, I joined the American Cancer Society Cancer Action Network of Texas as a volunteer, which opened doors for me to share my story during HPV awareness events at underserved elementary schools to parents inquiring about the HPV vaccine. I also was afforded the opportunity to share my story during an HPV Roundtable event hosted by the American Cancer Society. Throughout 2022, I continued to share my story at events because I truly understood that my story mattered.
In the summer of 2022, I was chosen as a patient advocate for NRG Oncology’s Cervix and Vulva committee that reviews concepts for clinical trials, which includes ensuring a diverse population participate in the clinical trials. In September 2022, Cervivor hosted their Cervivor School in Nashville, Tennessee and I was awarded the Cervivor Champion award. What a humbling moment in my cancer journey to be viewed as a “champion”.
As I pondered the word champion I found this definition, “a person who fights or argues for a cause” and I silently agreed. Yes, that’s me. That’s what this community stands for and Cervivor helped me locate that champion inside of me!
This revelation reminded me that this cause is larger than me! No one should die of cervical cancer, however, they still do. Black women are statistically more probable to die from cervical cancer and Hispanic women have the highest rate to develop cervical cancer. I’ve made it my mission to touch all diverse groups, regardless of race, creed, color, or gender to ensure they understand the importance of their gynecological health and cervical cancer screenings.
This community was built and founded by a Black woman that understands the struggles that Cervivor’s diverse community members face. There is a common theme that you may hear from any Cervivor which is “no one fights alone.” As a Black woman that has watched a community of Black women not able to address their gynecological health due to lack of insurance, child care, money, or understanding; I understand that my voice matters and holds weight within diverse populations. I intend to amplify my voice through this position to aid in decreasing the cervical cancer inequality gap that statistics show us. How you may ask? By ensuring that the Cervivor community members and any cervical cancer patient, survivor and/or thriver is supported and armed with knowledge to assist in this effort.
If social media is not your thing, no worries I’ve got you covered! Email me at [email protected]. I would love to connect with you as we work together to end cervical cancer. Don’t be shy, tell me how we can help close this inequality gap. You are a part of the Cervivor footprint, your thoughts, involvement, and voice matter!
When I was diagnosed with cervical cancer, I never imagined the journey would include a new sidekick! I finished stage 3B cervical cancer treatment around August or September of 2018. About three months after treatment, I began to experience trouble going number two. It was the worst feeling ever. The times when I could go, it was excruciating, and with plenty of blood. I started to go number two again, but the weirdest thing happened. It was coming from my vagina. I had developed a fistula due to my radiation treatment.
I went into the hospital immediately and was admitted from December 31, 2018 until January 16th, 2019. During that time, they inserted a nutrition PICC line, checked my stool, inserted a catheter, and prepared me for surgery to remove some of my bowel and colon. My doctor explained that there would be a possibility that I would get a colostomy and he may remove my uterus, but it depended on the damage they saw inside. When I woke up, I was informed that the surgeon had removed my right ovary and fallopian tube, and I had a colostomy bag.
The nurse gave me care instructions and I learned to care for my new sidekick. I went through stages of confusion, anger, fear, and insecurity. After getting used to it, I named it, Sheba, and called her my sidekick. I’m a bit more comfortable with it now, but sometimes I still struggle with public participation because of how active it is.
I’ve been diagnosed with body dysmorphic disorder since receiving it because of my constant worry about how I look with a shirt bulge or certain things that I now become obsessed with. Although I’ve gone through these struggles, I’ve learned to appreciate having my colostomy bag, as it has saved my life. I feel better knowing I can use the bathroom without getting infected or hurting myself even further.
I get better each day as I learn and grow. I am living and taking it one day at a time, as I make new goals and step out of my comfort zone. I wouldn’t have it any other way. I am a CERVIVOR!
Kyana Johnson resides in Orangeburg, South Carolina. She is a stage IIIB cervical cancer Cervivor, colostomate, and Marriage and Family Therapy student. Cervivor has always been Kyana’s safe space, information hub, and a great place to come together for a cause greater than us. Cervivor is her inspiration for her advocacy efforts.
As we wrapped up the last weekend of Cervical Cancer Awareness Month (CCAM), we headed to New York for a monumental event that started off this year’s Cervical Cancer Summit powered by Cervivor.
Founder Tamika Felder, along with members from the Cervivor community, were invited to ring the closing bell on Nasdaq. Tamika’s call to action to the world, “Join us in this mission because no one should die from cervical cancer.” And the world is listening!
Photography courtesy of Nasdaq, Inc.
We kicked off the 2023 Cervical Cancer Summit in partnership with Jacobs Technion-Cornell Institute, it was truly an inspired and innovated conversation with Eve McDavid, a cervical cancer survivor and Fem Tech entrepreneur, along with the brilliant Dr. Onyinye Balogun and Fernando Gomez-Baquero. By using the patient voice, they are developing a revolutionary new device that will transform Brachytherapy, which still uses the same barbaric process that was developed in the 1970’s, with no regard for the actual female anatomy. We are excited to see more innovations like this happening in treatment altogether!
We continued with the patient voice perspective with members of the Cervivor community speaking on the Power in Patient Voices with Arlene Simpson, Yvette Torres, Kadiana Vegee and Kate Weissman. They shared how the collective Cervivor voice can bring more visibility and influence change, working towards our common goal of ending cervical cancer.
Dr. Rebecca Perkins joined us for Expert Hour on all things cervical cancer and HPV. You can tell that Dr. Perkins is very passionate about educating others to understand the importance of HPV vaccination and cancer prevention. “HPV vaccination is cancer prevention!”
The day continued with a session on Emotional Resilience: Survivorship & Support. Community members Anna Ogo, Tina Vetreno and Tiera Wade joined presenter Danielle Modlo, who is a Certified Nurse Practitioner at Cleveland Clinic, really brought to the surface what cervical cancer patients and survivors face from a mental health and wellness perspective during and after treatment.
Joslyn Paguio, Cervivor Podcast host, lead a conversation on Sexual Health with Dr. Rosemary Basson on how we navigate our ‘new groove’ through our physical and emotional changes that cancer brings to our sexual desires.
Our last panel discussion was on Navigating a Cervical Cancer Diagnosisand Treatment Options – What’s Best for Ourselves with Ayanna Bass, Karla Chavez, Carol Lacey, Jenn Myers, Karen North, Selena Ruston and Kimberly Williams. We discussed how we make sense of everything we go through from diagnosis and beyond, and choosing the best treatment plan for you which may include clinical trials, more surgeries, or second opinions.
Just as the day began, we ended with an exhilarating bang as Dr. Cindy Trice shared her personal cervical cancer journey and how years later that journey helped create and fuel KickIt Pajamas. She truly turned her pain into purpose and we just love her company’s mantra, “Friends don’t let friends have hospital butt.” Her inspirational talk left us laughing and crying.
Last but not least, we celebrated five new Cervivor Champion Award recipients for going above and beyond with the mission of Cervivor being their driving force. Join us in congratulating these outstanding individuals as our 2023 Cervivor Champions!
Eve McDavid & Dr. Onyinye Balogun, Mission Driven TechKate Weissman, Yvette Torres, & Tina Vetreno
When I was asked to write a blog for Cervical Cancer Awareness Month I happily accepted, but soon after the irony hit me. Awareness is something I did not have when it came to cervical cancer. Awareness is the single thing that got me into this situation in the hopes that no other woman is punished for their ignorance as I have been.
Jessica with her family
About 15 years ago when I was 21 years old, working two jobs and going to college full time, I had a pap test. I didn’t have it because I was being responsible for my health or anything like that, I had it because the only way to get birth control was to do an annual pap and I wasn’t ready to be a parent. I could barely care for myself. It came back irregular, and I was told they’d need to do a minor procedure called a colposcopy to make sure everything was okay. The “minor” procedure was where an OBGYN goes in to clip a piece of your cervix off to biopsy. It definitely didn’t feel minor, and the memory burned into my brain forever as a “never want to experience that again” item along with wrecking my car and eating mayonnaise.
Fast forward to three years ago and I had just moved to Spokane. I had decided to get a new birth control, so I went and found a new OBGYN (would there even be women’s health if we weren’t always concerned about being pregnant?). Five minutes into the appointment and I didn’t love the guy, which is saying a lot because it doesn’t take very much for me to love you. He was cold, direct, and impersonal. I get it, as a doctor you have to have a little bit of that in the field, but this individual was just not my cup of coffee (NOTE: I substituted coffee for tea here because I think all tea is dirt water). He told me I needed to have that horrible procedure again as a “precaution” because I had a strange-looking spot or two. Really, I wasn’t informed of how serious that could be, or what the spot meant, or anything. Now, I’m not saying it was his fault that I didn’t return after that day to get another colposcopy, but I do believe if things were explained a little more clearly, I would’ve returned to get my procedure.
Doing another time jump, I had now avoided having another pap for two years, but hey, surprise, my fertility brought me back into the stirrups (the hospital kind, not the horse kind). My lab results had come back positive for HPV 16. There’s a lot of stigma with HPV and being someone who’s never had any sort of STI, I was horrified. But the truth is about 90% of people have HPV and have no symptoms for their entire lives. The problem with my HPV is the number behind it. That number is known to cause cancer. Finally, my amazing new doctor sat me down and let me know what that meant, and how important getting a colposcopy was. Unfortunately, because I was pregnant with my little miracle, they couldn’t take the actual sample of my cervix, but still wanted to schedule a couple “look and sees”.
When my OBGYN took over the process, she did my first biopsy-less colpo. She even showed me what she saw and pointed to a couple white spots in my cervix that she thought looked suspicious but “definitely weren’t cancer”. Over the next nine months I did those two more times, both of which I had to remind my OBGYN about. Finally, when I was six weeks postpartum of delivering the world’s most majestic little angel baby, I again reminded my OBGYN about getting my colposcopy. It was horrible and I threw up when I got it done.
Jessica & Kenny
When I got home that night, lying in bed with my husband and talking about our day, I suddenly got quiet. He asked me what was wrong, and I replied that I knew I had cancer. I was sure of it. Of course, he didn’t believe me. I don’t even think that possibility was in his mind, even when I said it out loud. But something innate confirmed it, as if despite having zero symptoms my body knew there was something inside of me that wasn’t right. Sure enough, one cone and PET scan later it was confirmed, Stage 3 cervical cancer.
In retrospect, I know it’s cliche but “everything really does happen for a reason.” It’s weird to say, but I am glad they didn’t catch my cancer earlier. I am glad because usually, the treatment for stage 1 cervical cancer would be a radical hysterectomy. If my cancer had been caught earlier, I would’ve never had my son. I would endure 1000 cancers for him to be born. That being said, if I would’ve had my procedure done three years before, I would likely have caught all of this before there was cancer. So, really this just boils down to taking responsibility of your own health. No one will do it for you. And just because you “feel” healthy, doesn’t mean there isn’t something lurking inside. If you take away anything from this, take the initiative to get an annual pap, and further, if something is irregular, take the follow-up. Be aware of this extremely horrible but preventable disease.
Jessica lives in Spokane, Washington with her husband, 5-month-old son Kenny and 6-year-old step daughter Kyla as well as their two dogs, Cane Corso Bruce and Boston Terrier Elvis. She works as a large enterprise senior account executive for Gartner. In her spare time, she enjoys snowboarding, wakeboarding, golfing, showing her dogs in conformation, riding her horse and spending time with her wonderful family.
“Your birthday is the beginning of your own personal new year. Your first birthday was a beginning, and each new birthday is a chance to begin again, to start over, to take a new grip on life.” — Wilfred Peterson
Cervivor, Inc. is celebrating eighteen years as the leading voice in cervical cancer patient advocacy. We have been at the forefront of change, of dismantling stigma, and of pushing toward a future free of cervical cancer. Cervivor has also been a place of connection and support for so many affected by cervical cancer. It hasn’t always been so apparent as this community has grown and evolved over time.
When Cervivor founder and chief visionary, Tamika Felder started this organization, it was because she knew there was power in a collective and knowledgeable voice. She knew that others like herself needed a community and a purpose that gave back what cancer tried to strip away. A community that refreshed our strength and resilience skills to overcome the trauma we have experienced. She strategically used the tools she possessed as a lifelong storyteller and compassionate change-maker. Tamika created, as she always says, something she didn’t have as a young adult and cervical cancer survivor.
What started as Tamika & Friends, Inc., supporting cervical cancer survivors and their families, evolved and grew because Tamika knew the future held endless possibilities for empowered and educated patient advocates who wanted to show the world that cervical cancer has a multitude of faces and backgrounds. She knew that by simply sharing our cervical cancer experiences, people would listen and that meant change was possible. We are going to officially put an end to the shame and stigma behind a cervical cancer diagnosis and hopefully one day to the disease itself.
Eighteen years later, Cervivor has a global reach and our partnerships across various health disciplines brings our work of cervical cancer awareness, prevention, and support to even more audiences — policymakers, researchers and medical teams, educators, and even The White House.
Cervivor continues to support newly diagnosed cervical cancer patients, as well as create spaces for those seeking to connect and those wanting to add to our advocacy footprint. We have come so far since the early days of our HPV/House Party of Five but still have more work to do. We have more lives to help save and honor the lives of those who are no longer with us through our work.
We will continue on but we need your support. Please continue to be visible as our supporters, advocacy partners, friends, and family. We cannot do this work alone. Start by donating $18 today in honor of Cervivor’s 18th birthday.
Lastly, let’s sing a happy birthday tune to our beloved organization, because #WeAreCervivor!
Cervivor Spirit Week gives our community a chance to bring some fun to an otherwise serious topic of cervical cancer awareness and prevention. As our Cervical Cancer Awareness Month Committee Co-Chair, Jenn Myers says, “It can be a heavy topic but we are the voices that need to do this work.”
We definitely had a ton of fun with everyone this week as we splashed social media with so much teal & white awareness! We love how many people took notice, shared their stories, and joined in on our cause.
Cervivor Español unofficially kicked off the spirit week with a MeetUp on Saturday then we transitioned into the theme days starting on Sunday! Sports Day Sunday brought out all the sporty-Cervivors representing their favorite teams. Lisa Gopman reminded us to get our cervical cancer screening and vaccinate our kids against HPV all while showing off her Bengal pride.
There were so many great Movie Monday quotes from some classic Hollywood films. Kel Bel spent the weekend watching Harry Potter movies with her daughter while recovering from her hysterectomy and shared this Albus Dumbeldore line that hits her every time, “Happiness can be found even in the darkest of times, if one only remembers to turn on the light.”Mic drop.
Our Cervivor Noir and Cervivor API groups kicked off their inaugural MeetUps to further our commitment to diversity, equity, and inclusion for anyone impacted by cervical cancer. There were stories shared so powerful and we cannot wait to see the work they all do in furthering our mission to end cervical cancer. (If you identify as Black, join Cervivor Noir and if you identify as Asian or Pacific Islander, join Cervivor API).
On Talk to Me Teal & White Tuesday we asked you what Cervivor means to you and here’s what you shared with us.
“Cervivor means no one fights alone.” ~ Christy
“Cervivor means sharing our stories and using our voices to spread awareness and to end cervical cancer and to let other women know they are not alone.” ~ Brooke
You gave us all the cozy vibes on Warm Up Wednesday and Cervivors were sharing pics snuggled under blankets and some with their pets. Joy shared the unconditional love from her cat and Arlene was living the Wonder Woman Snuggie life.
Joy & her catWonder Woman Arlene
The favorite food of choice on Tasty Thursday seemed to be none other than… tacos! They really are the perfect food! Sharing our tasty treats helped us get ready for Saturday’s amazing session, Cooking with Tracy Citeroni, who demonstrated a versatile, healthy and delicious quinoa ‘risotto’. You can grab the recipe here to cook on your own!
We even kicked off our first-ever Cervivor Book Club meeting by discussing Brene Brown’s Daring Greatly! As we headed into our weekend, we asked you to share your happy places on TGIFriyay. Sand, surf, mountains, lakes, fireside, wilderness trails, and museum strolls hit the top of your lists for joy-inducing places we like to be.
Phyllis captured magic in HawaiiKristine’s sunsetAmanda’s trail
And we ended this year’s spirit week with a favorite, Sock It To Cervical Cancer to bring out your favorite statement socks with a Cervivor flare!
New Cervivor socks!Tasha Rachel
Through this time, we continued to honor the joy and Cervivor spark of our late Cervivor sister, Jodi Madsen. Cervivor Spirit Week was one of her favorite things from last year and she was a master in fun content creation and social media advocacy.
We hope this week has inspired you to continue these ways of advocating throughout the rest of 2023. It is truly incredible to see the power of our community and it’s a great reminder that we are Cervivor and we are unstoppable!
It’s probably time to address the elephant in the room – Stage IV cancer. Words that typically come along with this stage diagnosis are incurable, terminal, and life-threatening. In my case, my cervical cancer has metastasized and spread to my collarbone and armpit area. Compared with many, my Stage IV is ‘minor’ because it is not present in my blood, bones, or brain. BUT it is incurable. The goal is to treat until we reach a point of NED (No Evidence of Disease), a pseudo remission. And for the remainder of my time, I will need to regularly test for recurrence.
So, I’m not going to live forever; who is? And maybe I won’t live as long as I hoped, but there are new advances in treatment daily! I don’t discuss this part of my cancer journey very often because I refuse to give it any credence.
What I find curious is that I didn’t invite that particular elephant into my room. It was placed there by others. I know cancer is an uncomfortable subject for many, but to quote Monty Python, “I’m not dead yet”, so please don’t treat me like I am!
The elephant in my room is a very different beast. Meet Ganesha! Ganesha is a Hindu deity that is known as the remover of obstacles. He is a symbol of prosperity and wealth, and he is believed to bring good luck. This is definitely the elephant I need in my corner; a hopeful, powerful and positive force!
I believe that “the diversity of faith should be appreciated and celebrated.” (Stephen Mattson quote) That’s why I’m so appreciative of any prayers, positive vibes, or good juju sent my way. I’ll take it all and return it tenfold, should you need it! My ultimate goal is an honest relationship with my creator and maybe in my world, gods and elephants occupy the same space!
There are a few more elephants that I choose to have in my space and one of them is my support group. “In the wild, female elephants are known as fierce protectors. And when one of their sisters is suffering, they circle up around her. They close in tight, watch guard, and even kick dust around her to mask her vulnerable scent from predators. And yet, we are the same. This is who we are, and who we are meant to be for each other. Sometimes we’re the ones in the middle. Sometimes we’re the ones kicking up dust with fierce, fierce love. But the circle remains.” – From the Festive Farm Co.
The last elephant in my room is my mom. She was the first lover of elephants I knew (a byproduct of living in Thailand). I fondly remember her collection of elephant figurines, turned towards the window to keep the bad luck at bay. Sadly, she passed from liver cancer ten years ago, but she would have been the first to lead the charge to circle up in support. And her wisdom and strength are ever present in my room (and life), because like elephants, love remembers.
And so, my journey continues. With a lot of faith, hope, love, support, and my elephants, I plan on living every day to the fullest!
Christy K. Chambers is a world-traveling, military brat who moved to the east coast for college and never left. She currently resides in Monroe, North Carolina with her husband, son, and doggo, Ethel Mertz. A Jill-of-all-trades, she has had multiple careers in theatre, stage lighting, commercial printing, retail and paper arts. Christy was diagnosed with Stage IVb cervical cancer in May 2022 after she went for a routine Pap test. She completed round one of treatment in August 2022 and is currently being treated with immunotherapy.
After completing my oncology protocol and hysterectomy for my cervical cancer, I developed a rectovaginal fistula. This meant that due to the radiation I received, my colon and vaginal wall merged. I like to think of it as when you burn two plastic sheets together, they become one. At some point, a tear began to form, and it developed into a fistula.
How did I find out about the fistula? I can’t pinpoint the exact moment, but if I look back, I do remember a very sharp pain after I sneezed about four weeks after my hysterectomy. Later that week I noticed a different color in my urine and some pain each time I went to the bathroom. I called my doctor and he said he would like to check it out. By the time I went I was passing small clots, I was unaware if it was due to the surgery or an infection. When the doctor ran his tests, and the pelvic exam being the most painful one, he confirmed that a fistula had been formed. It was about one centimeter in diameter.
Photo from GynecologicSurgery.com
A week after my initial exams, I started passing stool through my vagina. That part of it has been the most horrible part of my life after cervical cancer treatment. I was told to wear diapers during this period, but I didn’t want to, so I started using maxi pads. I would be needing to change them at least 4 times a day. Going to the bathroom was painful and uncomfortable. I was battling pain and infections during the next couple of months until all testing was completed to see the course of action my doctors wanted to take. I started carrying an extra pair of jeans and 2-3 pairs of underwear because of the accidents. Doctors told me not to go to work during this time, but I really didn’t want to stay home. I needed to be doing something to take my mind off it. I made a strategy plan; I parked my car next to the nearest bathroom at my construction site. That way it was easier to get to my emergency bag and I had my brother working close by so I would call him up if I had any accidents that might require extra assistance. I also told two of my male coworkers what was going on with me just in case anything went wrong.
The most traumatic moment for me was when they had to perform the colon enema test on me. I remember I was that table being pumped full with barium and then just noticed my legs getting wet. I began crying and told the doctor that I was peeing myself. He said, it’s okay and they can clean it up. But I couldn’t stop crying and then I started to panic. He put his hand on my head and told me to breathe, he said he knows how painful this is but he needs to find out what is going on. When it was over, there were nurses in the room cleaning me up, that’s when I noticed that the bed and the floor were covered in my feces and barium, that came out of my vagina. To this day, it has been the worst experience I have ever had.
I remember changing in the examination room stall crying, feeling embarrassed, and with the desire to hug my brother who was waiting for me. There have been many beautiful things in my life, but that hug, that hug made me feel so safe. The doctor explained the extent of the damaged I had and that my surgeon would recommend getting a colostomy.
I am grateful for my colostomy, it has made my life less complicated.
Karla with her brother
Living with a tiny fistula, has changed my life, but has not stopped it. I did try Crossfit for two weeks but had to be checked since I started bleeding a bit, which showed that the fistula had become larger. So, now I stick to low impact activities, like walking and stretching. I have little to no infections and luckily I am off Tramadol and Dexketoprofen, which was the protocol I had for pain management.
My fistula is still here. In my last exam the doctor said it was barely detectable. I am still not sure if it will heal, statistics do not support this idea, so we know that my ostomy is becoming permanent. Which I don’t mind.
Karla Chavez is a Cervivor Ambassador, Cervivor Español Co-Lead and a 2022 Cervivor Champion Award recipient. Karla is a civil engineer in her home country of Honduras and she’s an amigurumi enthusiast.
My doctor called me on November 11, 2020, and told me over the phone that I had cervical cancer, and after I slid down the kitchen counter and physically got up off the floor, I started Googling ‘cervical cancer’. I knew where my cervix was and I knew I had cervical dysplasia in my 20s that had gone without treatment as it disappeared and the next pap was normal. But all of a sudden, I was a cancer patient. I was going to have a radical hysterectomy and bilateral oophorectomy. I was going to be genetically counseled and tested to find out I had a BRCA gene mutation. My body had turned against me. When I learned cervical cancer and HPV were linked, I was convinced I was contaminated and dirty and bad. It was the height of the pandemic and I was alone and scared.
I found Cervivor on YouTube first and watched every video. Later I found Cervivor on Facebook and joined I’m A Cervivor! and introduced myself. Between the website and all the Cervivor stories, I became informed. I understood my options and I understood what my experience might be like. I had this knowledge and a sense of community, and I felt empowered. I was ready to fight cancer because of Cervivor.
The Cervivor community was a lifeline on those nights I was afraid I was dying. It is still a part of my daily life today, after my one-year cancerversary. With Cervivor, we laugh together, we cry together, we learn from each other, we share our stories, we live our lives, we are still living, and we honor those who are no longer with us. Now that I am a survivor of Stage 1A2 cervical cancer, I am helping to support others by offering my shoulder to lean on and sharing advice and experiences with others going through the same diagnosis.
Cervivor is my support and hope. It felt like finding my family because I am an orphan and have no living family. They were at my side in the OR as part of my visualization exercise for a successful surgery. They were there as I dealt with the consequences of my surgery. Suddenly, I had a beautiful diverse rainbow of sisters from all walks of life, and we were all joined by our experiences and making sure that no one else would go through what we had gone through if we could help educate others. I learned something from every single one of them and continue to learn from them at every meetup and through every call and text to a Cervivor sister.
Cervivor has changed my life for the better. Programs from Cervivor comforted me after surgery and inspired me to take control of my body and my health in ways I had never done before. For example, I’ve lost 54 pounds and I’m healthier than the day of my diagnosis. I may not have any female reproductive organs in my body anymore, but I am still a strong bad@&$ babe. I am still fighting and adjusting to my body after cancer treatment, but I am also fighting for others, and I will never give up!
Cervivor taught me that cervical cancer actually gave me a superpower – the power to save lives by educating people on how we can end cervical cancer. Our stories matter. We are personal experts in our stories of cervical cancer and how much it takes from us. Cervivor teaches us to give back by raising our voices. Knowledge is power. The information and resources about HPV and cervical cancer from Cervivor can encourage vaccination and give patients the support they need.
Cervivor prepared me and supported me, and now I am paying it forward in my community and online. For me, “Informed. Empowered. Alive.” is one of my life’s purposes now. Thank you, Cervivor, I love you! Each and every one of us, no matter where we are in the cervical cancer experience – from those who have had dysplasia and an HPV diagnosis to those of us who have metastasized – it is an honor to count myself amongst us. We are empowered! Let’s make cancer pay!
Pixie Bruner lives in the Atlanta metro area and is already a one-year survivor of stage 1a2 cervical cancer. She is a roleplaying game author, poet, historian, and academic guest lecturer on Classical Studies. She is a NASA Night Sky Network award recipient for education. Her hobbies include art, stargazing, dressing like a cat, coloring (including her hair in random crazy colors), and she is a voracious bookworm under five feet tall. Pixie advocates for cervical cancer awareness by sharing Public Cervix Announcements to total strangers. She is currently starting a joint project with other survivors in her area (Teal Sisters of GA) to fight the stigma of HPV, crush the ignorance of cervical cancer and HPV-related health issues, encourage HPV vaccination, and educate on cancer screenings and treatment for everyone.
Each night, I climb into bed, prop up on my red, corduroy reading pillow that has followed me from college all those decades ago and slowly open a small, bound book. Pen in hand, I take a deep breath and begin a scribbled conversation that has kept me sane since my April diagnosis of synchronous cervical and uterine cancers. That book, this pen, those words are my free therapy. And I am better for them.
The magic of words was made plain to me in childhood. I taught myself to type on Mom’s gunmetal gray, Royal Underwood typewriter, pecking away on two fingers to churn out a neighborhood newsletter. Adolescence brought dreams of growing up to study Creative Writing, joining a writers’ colony in the Vermont woods and becoming the next Nikki Giovanni, Alice Walker, Gwendolyn Brooks…you see where this is going? Well, as too often happens, adulthood altered those dreams, and this English Literature major became a government trial lawyer in Massachusetts—still using words to shrewdly sway jurors and to sharply skewer opponents—but I always maintained a growing collection of blank verse, short stories, and other musings that one day could be shared with somebody. Anybody.
Doris’s cancer journal
Perhaps all that explains why one of the first errands I made immediately after my diagnosis was a search for the right journal to house my feelings—all the scary, happy, and unnamed things that would come my way along this journey. This vessel could not be flimsy or cheesy. No, buddy. This word-keeper had to be worthy of the emotions that would leak out onto its pages. Here is where I would explain how this “cancer thang” discombobulated us all.
I had always proclaimed that I planned to blow out candles at my centennial birthday party. How could the threat of mortality come knocking at my door now, when my married daughter in Mississippi (Lord help us) needed me after giving birth to our first grandchild in March? And my son was 2,000 miles away in the Boston area, having just survived a divorce and a torn Achilles tendon. He had a hard time handling my illness. My husband was trying mightily to cope with his own anxieties about my health and all the myths and stigmas associated with cancer. This was way too much for a cheap, lightweight notebook. Only a special book could cradle those complicated realities.
My chosen, pink pen pal has never failed me. Its sturdy pages have given me space to vent about the things it has been hard to articulate to folks: the chest port that feels reminiscent of alien abduction anecdotes; the tutorial on dilator use that made the nursing assistant blush; the way I could discern the texture of food (even water), yet not its taste; the exhilarating freedom of a shaved head displayed to all the world. And it has let me weep onto its cream-tinted pages, wrinkled testament to the overwhelming sadness that comes with this journey at the oddest times.
This journal is so much more than frequently illegible cursive words. No, these pages are quite often a battle cry, this warrior’s call to arms against the most unexpected enemy: her own cells. These pages are like an old-timey, gutbucket, blues chart from backwoods juke joint—a full-throated, belly-wail of agony and joy, growled by one who knows the score (literally and figuratively) and ain’t afraid to tell you all about it. And, always, always, that hard-cover book is my hymnal, sketching lines of praise to Him in Whose armor I outfit myself every day. This little unassuming book contains uniquely metered lyrics of love and faith and strength.
I will write my way out of this Egypt. The inked lines will chart the path to my Red Sea….
A sixth generation Texan from San Antonio, Doris Helene White earned a B.A. from Central State University in Ohio (an historically black institution) and a juris doctorate from Boston University School of Law. Her career in the government sector as a Massachusetts trial attorney reaffirmed her commitment to an equitable legal system. Retired in 2014, Doris returned home, where she indulged a passion for writing, became an amateur advocate for the history of African Americans in these United States and continued active affiliation with San Antonio Black Lawyers Association, Delta Sigma Theta Sorority, Jack and Jill of America, Bethel African Methodist Episcopal Church and other community organizations. Her husband Steven Soares, daughter Dr. Leigh Soares and son Steven Cooper Soares lead the best “cancer posse” in the galaxy!
“You have cancer.” Three words that no one ever wants to hear, certainly not during pregnancy… and certainly not when the part of your body the cancer has invaded is your cervix.
I will never forget that day. It was August 6, 2020. I was 34 and 20 weeks pregnant with my son, Karson, and those three little words turned my world upside down. As if 2020 hadn’t been tough enough already with suffering a miscarriage and dealing with a global pandemic, I was now living in a whole new nightmare. I had tested positive for HPV-16 and had an abnormal pap with HGSIL (high grade squamous intraepithelial lesions) in February after my miscarriage, but my doctor didn’t talk to me about any treatment at that time. I had put off having a pap, and with the guidelines back then, I was over a year and a half overdue. Two days after my birthday in April, I was surprised to find out that I was pregnant again, just two months after my loss.
I had a pregnancy confirmation appointment in May, but with appointments being pushed back due to COVID, I didn’t have my colposcopy exam until July 2020. My OBGYN reassured me that while she was concerned about what she was seeing during my exam, she didn’t think that it was cancer. I had never had an abnormal pap before and knew plenty of women who had abnormal ones all the time, so I really wasn’t too worried when I was referred to a gynecological oncologist to complete a biopsy at 19 weeks pregnant. When I sat down across from my GYNONC for my results and was told that I had squamous cell carcinoma of the cervix, stage IA1 (later amended to IB1) at 20 weeks pregnant, I felt completely broken. I remember thinking, why was this happening to me? And what had I done to deserve this?
Since I had already suffered a miscarriage earlier in the year, I was less concerned for myself and more terrified of what cancer could mean for my little miracle growing inside me. I knew the stage was early, but I still feared it could be worse than what the biopsy showed and had so many questions and concerns. Could I carry to term? What were my treatment options? What were the risks? Could it wait? Was I going to die and leave my children without a mom? And the biggest concern of all – what about my baby? Would I have to choose between my baby’s life and mine?
The day of my diagnosis was a whirlwind. I was so thankful my husband, Tyson, was allowed to be with me for support. Since it was in the middle of the pandemic, many appointments were restricted to patients only and no visitors. We spent the entire day at the hospital. I was scheduled for my cold knife cone surgery and we went straight from my GYN oncology appointment to do pre-op testing and bloodwork, then to see a high-risk OB. They did an anatomical ultrasound to check on Karson and measured the length of my cervix to see how surgery might affect my pregnancy and ability to carry to term. We were educated on the risk of incompetent cervix and premature delivery, and the possibility of having to have a cerclage if my cervix started opening. I remember leaving that appointment feeling very uneasy about what they might find during my surgery and afraid of the possibility of having to make an impossible choice if my staging ended up being worse than we thought.
We had our gender reveal on August 8, 2020, just two days after I was diagnosed. We really needed some joy, so we decided to have the party as planned. With everything else going on, my husband and I had decided during our anatomy scan that we didn’t want to wait to find out the gender for ourselves, so it was no surprise when my bonus son hit a baseball and it shattered and blue powder flew everywhere. We decided to tell our close friends and family about my diagnosis that day. There were countless hugs and so many tears shed when it should have been a time of celebration. I had my cold knife cone surgery two days later. Due to being pregnant, general anesthesia was too risky, so I had a spinal epidural and stayed awake for my procedure. They checked Karson’s heart tones before and after surgery to make sure he was okay. After my surgery, I felt so anxious when I was still numb and couldn’t feel if he was moving or not, I was so relieved when the epidural wore off and I could feel him again. On August 19, 2020, I saw my GYN oncologist again to receive the pathology results from my surgery. The news was not what we wanted to hear, and my diagnosis was changed to stage IB1, grade 2.
We talked through treatment recommendations from the tumor board, as well as potential risks. I remember her telling us that the surgical margins were clear, but she was concerned that the cancer may have already spread due to being unable to do the proper scans in pregnancy. She explained that I had grade 2 cell changes which grow and spread more rapidly, and that cancer can sometimes progress more quickly with pregnancy and hormonal changes. We were told about possible growth restriction for Karson in utero and the possibility of hearing loss for both of us from the Cisplatin. As terrifying as it was, I decided the potential benefits outweighed the risks and chose to follow the recommendation to do chemo treatments, knowing that I might also need to do radiation after Karson was born.
Brooke at treatment
I remember so many people were shocked that chemotherapy was even an option in pregnancy (it is an option in second and third trimester when the baby is more developed). Cervical cancer diagnosis during pregnancy is rare, with only .5-3% of women being pregnant or postpartum at the time of diagnosis. I was one of less than a handful of women that my team had treated for cervical cancer while pregnant, but I put my full trust in my medical team and in God to see us through it.
I was told that I would need to have a scheduled c-section at 37 weeks to hopefully avoid going into labor on my own, which would include a higher uterine incision to avoid disrupting my cervix and potentially spreading cancer cells. I was also told not to anticipate being able to breastfeed. I had a vaginal delivery with my daughter, Kaydence, and had breastfed her for 18 months, so hearing this was disheartening. I felt very scared, angry, discouraged, and alone. I started searching for cervical cancer support groups on Facebook to try to connect with others who had faced what I was going through. I was lucky to find Amie, another woman who was diagnosed with cervical cancer while pregnant and was going through the same treatment as I was about to be. Through Amie I also found an organization, Hope for Two, that connects women who are pregnant with cancer with other women who have been pregnant with the same type. I sadly didn’t know about Cervivor at the time, but it was reassuring to connect with Amie and my Hope for Two support, Devon. It helped me to recognize that I was not alone, and they gave me the hope that I desperately needed.
I did my first chemo treatment of Cisplatin and Taxol on August 25th, 2020 at 22 weeks pregnant. I asked a lot of questions during my education appointment prior to starting chemo and they were very thorough in explaining everything, but nothing could have prepared me for it. I didn’t expect how tired I would be, or how long treatments would take with the bloodwork, oncology appointment, pre-meds, and then the actual chemo itself. I was one of the first patients there each time and the last one out and slept through most of the treatment.
Brooke & her family
Two weeks after my first chemo treatment, my hair started falling out. At first it was just a little, then it was handfuls. I had ordered several head scarves as a precaution, but it didn’t prepare me for the heartache of losing my hair. I received a wig from the cancer institute and had a dear friend shave my head for me after my second treatment when my hair was so thin that I couldn’t stand it anymore. I was shocked that I didn’t cry; it was empowering to have control over something when so many things were out of my control. I never in a million years would have imagined having to wear a wig or fake eyelashes for my maternity photos, but with the help of a makeup artist/hairstylist friend I felt so beautiful, and our photographers captured some amazing memories for our family.
I continued chemo treatments every three weeks for a total of four treatments, with my last one completed at 31 weeks pregnant. I was very blessed to have minimal side effects from chemo. Other than fatigue, I had side effects related to the steroids I was taking – trouble sleeping prior to treatments, redness in the face and chest after treatments, increased urination, and heartburn.
During this time, I was also going to routine appointments with my regular OB and to see my high-risk OB every two to three weeks to check on Karson to ensure that the chemo was not stunting his growth or affecting his development. Unfortunately, I added another diagnosis at 28 weeks pregnant – gestational diabetes. Now instead of worrying that Karson would be small from the chemo, we worried that he might be too big from the diabetes, along with some other possible risks. I tried to adjust my diet but the steroids I was given for chemo made it difficult to keep my blood sugar down. I ended up having to check my blood sugar and inject myself with insulin several times a day for the remainder of my pregnancy (NOT a fan).
Despite the many challenges we faced, we found joy and comfort in getting to see our baby boy often with all the ultrasound and biophysical profiles during the second half of my pregnancy. In fact, we had so many done that we have a photo album full of just ultrasound photos of Karson.
Brooke with Karson and Tyson
I was originally due on Christmas Eve, but my c-section was scheduled on December 8, 2020, at 37 weeks and 5 days. I remember so many emotions that day – happy, scared, nervous, anxious, excited – but I think the strongest one was the feeling of relief. It felt like the light at the end of the tunnel, he was my blessing in the struggle. I will never forget the emotion I felt when the doctor lifted Karson up over the drape and I saw him for the first time, my perfect little 7 lb. 2 oz. miracle. My husband and I both wept with tears of joy that our baby boy came out okay. He was the most beautiful thing I had ever seen. With everything Karson and I went through, I feel like we will always share an indescribable bond. I kept a pregnancy journal to give to him when he is old enough to understand. I can’t wait to tell him about what a tiny warrior he was, even before he was born.
While my doctor was closing me up, my husband ended up going into the other room with Karson and the nurses while they worked on his breathing and cleaned him up. I was not allowed to have a doula or extra support with me, so I laid there alone, scared, and wondering if everything was okay. Unfortunately, Karson had trouble transitioning and had fluid in his lungs, constant grunting, and increased respiration rate.
When I finally got to hold him when we were in the recovery room, I wanted to hold him and never let go. I was determined to breastfeed him for as long as I was medically able, however long that would be (we made to it to two years and are working on weaning now). Karson was ready to nurse right away and latched like a champ. The doctors were still concerned but since a NICU room was not available, Karson was allowed to stay in our room overnight with special monitoring. He was taken to the NICU first thing the next morning and spent a total of 7 days there due to issues with his breathing and heart rate.
Brooke & Karson
We brought him home on December 16, 2020 and our family is complete. Karson is now a happy, healthy 2-year-old with no hearing issues or other noticeable effects from chemo.
I had my first PET scan following treatment on January 29, 2021. The waiting was hard, but they wanted to give my uterus time to go back to its normal size. I was so relieved when my results indicated no evidence of disease. On March 30, 2021, at three months postpartum, I had a radical hysterectomy at the recommendation of my medical team. Even though my husband and I had already planned to be done having children (he has a son from a previous marriage, and we have two together), I still struggled with the fact that the choice was no longer ours alone and was so final. I had hoped one day that my husband would have a vasectomy, but I didn’t imagine that I would go through such a major, life-altering surgery. They removed my uterus, cervix, upper part of my vagina, fallopian tubes, surrounding tissue, and 10 lymph nodes from my pelvic area. They also removed a cyst from one of my ovaries but left my ovaries so I wouldn’t go through early menopause (hopefully!) and moved them up in case I would ever need radiation to my pelvic area. I have a scar that runs vertically from my c-section scar up and around my belly button. The pathology from my hysterectomy came back clear and praise God I have had no further evidence of residual or metastatic disease from any of my scans! I celebrate January 29, 2021 as my cancerversary date, the date of my first clear scan.
Pregnancy is hard. Pregnancy with cancer is harder. I am so grateful to have had amazing support and care from my medical team, friends, family, and strangers that I have never even met. Without them, I wouldn’t have been able to remain positive and hopeful through my diagnosis and treatment with all the unexpected news and complications that I had along the way. I also believe that without God’s grace, Karson and I wouldn’t be here and healthy today. I didn’t grow up in church and I don’t come from a very religious family. It took being diagnosed with cancer to bring me to my knees and bring me closer to God. It is hard to have faith when you are in the middle of the struggle and easy to wonder why God allows bad things to happen to good people. God didn’t promise us that we wouldn’t go through hard times, but He did promise that he would never leave us (some of my favorite verses – Isaiah 43:2 and Joshua 1:9). I was saved during my cancer treatment and have since found a wonderful church family and my faith is stronger than ever.
I am hoping to celebrate two years NED at the end of January. I have found that just because someone is free of cancer doesn’t mean that they are cured of cancer. Some people think that once you get the “all clear” things can go back to normal and you can move on with your life, but cancer forever changes every part of your being – your heart, your soul, your mind, your body. For many cancer survivors, there are everlasting physical effects from treatment, and the worry and anxiety of recurrence is always there in the back of your mind. You become so much more aware of your body, and every time something feels “off”, every pain that you feel, every twinge that you have, you cannot help but wonder if it is back. I think with time it will get easier, but the fear is something I think I will live with for the rest of my life.
I believe my purpose is to be a light for others facing cervical cancer, especially those facing it while pregnant. I want to continue to share my testimony and use my survivorship to provide hope, encouragement, and awareness. Whether you are newly diagnosed, going through treatment, dealing with a recurrence, or have no evidence of disease, please know that you are not alone. You have support with Cervivor and there is hope! You are brave, strong, beautiful, and resilient. Don’t give up!
Brooke Wyse is a stage IB1 cervical cancer survivor and member of the Cervivor community. She lives in northeast Indiana with her husband and their three children, ages 2, 7, and 17. In addition to her efforts to spread awareness and end the stigma and shame of HPV and cervical cancer, Brooke is also passionate about mental health and addiction recovery and works as a manager of DCS services at a community mental health center. In her spare time, Brooke enjoys spending time with her family, reading, crafting, and roller skating.
Every January, our community commits to bringing their global voices together in unison to talk about and bring awareness to cervical cancer and what it means to be a Cervivor.
Cervivor is a movement and a community. A community of people who find themselves holding on together because of the most life-shattering circumstance possible — a cervical cancer diagnosis.
As we say so often, we are in a club that no one wants to be in but having found each other brings us hope, support, and a platform to bring the visibility needed for cervical cancer prevention and awareness.
We come from everywhere. Urban cities, rural communities, countries across the globe, suburbs, and everywhere in between. Our diagnosis, treatment plans, and the way we move within our cancer is different for each of us yet when we arrive at Cervivor we realize we have a collective voice that is unstoppable.
Maybe you took that first step and shared your cervical cancer story. You typed out the nitty gritty of being diagnosed with a cancer that is rarely talked about and far too often stigmatized. And then you went on to read the stories of other women, some so similar that you immediately felt connected. That’s where it begins, this community of Cervivors.
These are your words, our collective voice, and this is what being a part of the Cervivor community means to you.
THANK YOU CERVIVOR TEAM @iamcervivor for your eyes to see, your ears to listen, and your hearts to heal. Let’s keep spreading awareness and support our fellow CERVIVORS who need us the most! ~ Arlene
This came just in time to accompany to my first chemo (this time around) tomorrow. Bring on healing and killing cancer with strength. ~ Laura W
I just got the sweetest note in the mail. Totally lifted me up. Love all my Cervivor sisters! And you’re right, with having all of you in my corner, I’ve totally got this! This is just a small bump in the road, but onwards and upwards! ~ Tammy
I just came home from my nephrostomy tube exchange to this amazing gesture that brought tears to my eyes. Team Cervivor you all are amazing, your support and kindness goes beyond anyone’s expectations and I am eternally grateful to be part of this group. Thank you! ~ Carmen
Today I’m very grateful for this beautiful card! Words can’t describe how thankful I am for finding out about this group I wish I could have found it earlier! ~ Alexia
Thank you, Team Cervivor, for making a rough week a little better today! I’ve been down with the flu all week, and solo parenting on top of it. This was such a sweet delivery today. ~ Anne Z
So much love! Thank you, Cervivor, for always being there! ~ Joanna
Team Cervivor is truly the best; sitting here crying… thank you. People don’t understand the milestone this means… but it is so wonderful to be a part of this group who really do get the relief we have for making it to this one-year mark! Thank you for all your hard work behind the scenes and for us! ~ Victoria
Thank you Cervivor for giving me this opportunity to be among this great and strong team. ~ Milicent
Thank you, Team Cervivor for the birthday card. I have been feeling down because I was a little bit under the weather but this card made my day. You guys are awesome and thank you to everyone in this group for making this community wonderful. ~ Anna
I came home yesterday to goodies and a nice book after a trip with my mom to the oncologist. I felt really down that I couldn’t do as much as I wanted to during last month and I was hard on myself, so when I received this from CERVIVOR, I was happy for the uplifting and encouragement. Cervivor is amazing for all that they do to assist all of us in being empowered and also caring for ourselves. ~ Kyana
We are Cervivor. You make this a community by uplifting each other with grace and compassion. You share the difficulties cervical cancer can bring yet you always make sure to check in with each other. Thank you for being here, for sharing your stories, and making this a safe place for all.
Not yet a part of the Cervivor community? Join our Facebook group I’m A Cervivor!, Cervivor Español, or Cervivor Noir. Do you identify as Asian or Pacific Islander? A private group will be coming soon. To be in the know, send us an email at [email protected].
Do you have a cervical cancer story to share? Visit cervivor.org/stories and share yours today.
It is with our deepest sympathy we announce the passing of our dear community member, Jodi Madsen.
After being connected through our monthly virtual support group, Creating Connections, Jodi felt she had found the community she had been seeking. She was a wordsmith and gifted us with several blog posts to share her deeply personal connection to cervical cancer.
Jodi had what we call the “Cervivor Spark” about her. She took her diagnosis and turned her voice up in a way that others would take notice and understand how we’re more than a cervical cancer diagnosis. We’re daughters, sisters, mothers, aunties, best friends, coworkers and so much more.
She utilized her social media platforms to create informative reels which earned her the Brittany Wagner Social Media Advocacy Award from Team Cervivor. Jodi would later get recognized by a global pharmaceutical company to share her experience and make an even bigger impact.
She was such a bright and supportive light in our community attending one Creating Connections after another – always with the biggest smile on her face and an occasional tear or two from seeing the impact of sharing our stories throughout the year.
She shared, “Getting to listen to my friends brought in a brightness I needed so deeply in my soul.”
Our thoughts and prayers are with Jodi’s two sons, her husband, family and friends, and our entire Cervivor community. We know how much each of you meant to her.
As someone who lost over 100 pounds, (113 pounds to be exact), people often focus on my physical transformation.
However, the physical transformation, which you can see in the before and after pictures, only shows a glimpse of what the journey is all about.
I am most proud of the discipline, determination, patience, consistency, and focus I have used through the years – to give me the energy, the joy, and the freedom I get healthier.
I am not going to lie and tell you that this journey has been easy. It has NOT been easy by any means. People often ask what was easier, me beating my cancer diagnosis or me losing 113 pounds naturally?
My answer is… nothing worthwhile is easy! They were both challenging. You cannot compare both journeys. They come with different challenges, which I can say were hard to overcome. Nevertheless, here I am on the other side.
For those who are not too familiar with my story, just let me give you a small synopsis. I was diagnosed with stage IIB cervical cancer in 2008, three months after I had retired from the New York City Police Department.
I went through 35 rounds of external radiation, seven treatments of chemotherapy, and two treatments of brachytherapy (internal radiation). In May of 2009, I had no evidence of disease.
As cancer patients know, being cancer free is not the end of our story. Many people think that we can continue with our lives and we can pick up where we left off. That is far from the truth. I consider myself one of the lucky ones because I do not have too many secondary effects from treatments compare to others that have gone through this. So many others have lost their lives too.
I dealt with depression after treatments, and found comfort in food. This took me to tip the scale at 240 pounds. I am 5’3”, so this amount of weight made me morbidly obese according to the weight charts.
Unfortunately, this situation brought consequence, and I became sick again. Diagnosed with type 2 diabetes, high cholesterol, and high blood pressure. I had to take five different medications to control these illnesses. I really was sabotaging my second shot at life, and I was not realizing it.
This realization clicked when my medications stopped working because I was not helping by changing my lifestyle. My doctor gave me a reality check – either I change my lifestyle or the next step was to start injecting the insulin to control my blood sugar levels.
I needed to do some work, no question about it. I did not want to go to the stage of injecting insulin if it was in my power to turn it around.
At this time, I made the determination that no matter how many times I will fall, I was going to get up and continue the mission. It was not as if I did not try before, I had, but this time my WHY was bigger than my prior excuses.
In 2012, fourteen months later, I had lost 113 pounds, reversing all my illnesses, and taking me off all prescribed medications.
Perhaps I make it sound easy, and some people even say that I make it look easy. I can honestly tell you “IT IS NOT.”
The following are ten things I have learned throughout these past ten years. Not necessarily in this order.
1. The journey is NOT linear – By no means is it a straight line. There will be ups and downs, failures and successes. You need to be patient because results are not going to come overnight.
2. Discipline yields success – I am not talking about restrictions. I am talking about being consistent, planning, and taking daily actions. Be disciplined about these three things.
3. Losing weight is like watching a clock – When you are doing something you do not want to do, and the more you watch the clock, the slower it seems to move. However, when you are having a good time and not worry about the clock, time seems to fly by. Losing weight is the same. The more you focus on the scale the slower it feels like it is moving. Instead, focus on being consistent and remember why you are doing it; you will be surprised how the results start to show.
4. Be kind to yourself – There are going to be some days that you will be unhappy with your choices. It happens, believe me, but it is okay. Do not throw it all away. One bad day does not dictate the days to come.
5. Block the “unnecessary noise” – This is what I call the ‘opinions of critics’. Many will have opinions, recommendations, etc. and it’s okay, let them have them. You might hear things like “you do not need to lose weight”, “you are getting too skinny,” “do this diet instead”, “do this exercise”, etc. Surround yourself with like-minded people. Your own community. Just remind yourself that this is your journey and you are the one who is making the educated choices. Go on your own pace. This is your power – exercise it.
6. The scale is NOT your enemy – I know this topic is controversial. For many the scale is a scary thing, and not too friendly at times. It took me awhile but I have learned to treat the scale as a tool that gives me information on what is going on with my body. I do not attach myself to the number. The number tells me what I am doing wrong (not enough sleep, little hydration, nutrition not on point). Non-scale victories (NSV) are great, but I still believe you need to know that number to know what your healthy weight that you are comfortable with. A healthy weight looks different on everyone.
7. Age is just a number – It might sound like a cliché, but it’s coming from me. I am living proof of this cliché. I have managed to lose weight at ages 53, 60 and 63. Often I hear things like, “I am too old to lose weight”, “I cannot move the way I used to”, etc. I was 53 years old when I naturally lost my original 113 pounds. I am an emotional eater and certain things trigger old habits; I needed to lose weight at the age of 60 and then again at 63 too. I am 63 years old and I am active, and I have a healthy weight for my body. I teach fitness classes and I have plenty of energy.
8. Make Health Your Priority – By now, you have gathered that my journey to where I am now has not been perfect. I have fallen big, but I do not give up or say, “It is just meant to be this way”. No – I refused to accept this. I am committed to making my health a priority. I know that nothing in this world is guaranteed, but being as healthy as possible gives me the best odds to have the quality of life that I deserve.
9. Alignment of Mind, Body and Spirit – I call them my three pillars. We need to work on all three simultaneously. The connection between the three of them is when we are the most powerful. We cannot work on only one because the other two will suffer. Some people might think this is pseudo-science, or perhaps woo-woo practice and that’s okay but do not knock it until you actually give it a good try. The main concept behind the mind-body-spirit connection is that these things combined give us identity, determine our health, and make us who we are.
10. The Evolution – I have witnessed my own evolution. I have evolved by my learnings, and my experiences. I know that the choices are mine. Taking full responsibility for my life, my thoughts, my attitude and my daily actions. It is not an easy task; it is something we need to work on daily. There is no finish line. There is no final goal. It is part of who you are and who you want to be.
Patti is a Cervivor Ambassador and Cervivor’s Wellness Instructor who manages our Survivor Slimdown program. She is a retired NYPD police officer and a 13 year cervical cancer survivor. She resides in NYC with her husband of 23 years where she’s a Group Fitness Instructor and a Health Advocate.
Cervivor would like to thank each and every one of our generous donors who sent a gift of support during Giving Tuesday! Your generosity and kindness continue to make this organization thrive.
If you missed us, no worries! The giving season is still upon us and there are plenty of ways you can support our community outreach programming:
Donate to our NEW Cervivor Book Club
That’s right! We’re starting a book club and we hope that you’ll help support this initiative by donating the books from our Amazon Wish List here.
Do you have a gently used copy of the books on our list that’s taking up space? Email us to find out how to donate to our programming!
Sponsor a Limited Edition Self-Care Box
We have a small quantity of boxes that were carefully curated by Team Cervivor available through the Cervivor Shop. They feature products created by cervical cancer survivors in our community. These boxes were specifically designed for cervical cancer patients and survivors and will make the perfect gift for the holidays! Interested in sponsoring a box? Send us an email at [email protected]!
Join our Virtual Pap Rally & Run
It’s back! The Virtual Pap Rally & Run will be starting January 1st and will go through January 29th in honor of Cervivor’s 18th birthday. To join, create a team, join a team, or become a team of one. Create a goal that you choose; just make sure it has a version of the number 18 in it. Post your pictures on our Facebook event page while putting your personal goal into action or tag us on your social media platforms – wearing your teal and white is a bonus. To learn more about the event or create or join your own team, visit our race page here.Download and share the event flyer with your friends, family, cancer centers, gyms, churches, etc.
Become a Monthly Donor
Replace a coffee once a month with a $5 donation (or more). Your donation will go towards grassroots organizing and program support by providing funds for printing, postage, and support bag materials to help cervical cancer patients and survivors to connect in their local communities so no one has to feel alone.
This year, shop, donate, and volunteer with purpose. Every gift that is presented to Cervivor directly impacts the community of cervical cancer patients, survivors, and thrivers.
Where our community continues to grow quickly, we’ve been able to spread our collective wings and soar higher toward our mission of ending cervical cancer -all while supporting the members of this amazing community. This season represents togetherness and gratitude and we want to share what’s in our hearts and how you have been the center of our thankfulness.
“I am thankful for the relationships that have been formed from one of the hardest aspects of all of our lives. It warms my heart so much to see people in our community going through a hard time to still show up for others. It’s what makes our community extra special.” – Tamika Felder, Cervivor Founder & Chief Visionary
“I am beyond grateful to be able to connect with and serve so many incredible people in the Cervivor community. It truly makes my job so much bigger than I could have ever imagined it to be.” – Morgan Newman, CervivorCommunity Engagement Liaison
“I am thankful for the dedication, hard work, and effort that so many within our community make towards our collective goals!” – Heather Banks, Cervivor Lead Advocacy Educator
“I am grateful that our Cervivor community is full of compassionate people, from all over the globe, who never hesitate to uplift one another and that many have chosen to make their survivorship a beacon for change.” – Carol Lacey, Lead Cervivor Ambassador
“I’m grateful to this community because we are people woven together. We lean on one another, learn from one another, celebrate together, and grieve together.” – Patti Murillo-Casa, Cervivor Wellness Instructor for Survivor Slimdown and Co-Lead for Cervivor Español
“I am grateful for our Cervivor Community. The fact that we share with each other cultivates our relationships and our passion in ending cervical cancer. Each one of us is cog in this intricate machine that is advocating for our health. This is what I find beautiful and makes me feel grateful: we are not alone, and with that fact we can accomplish our mission.” – Karla Chavez, Cervivor Español Co-Lead
“I am forever grateful for our Cervivor community. The support and understanding allowed me to know that I am not alone. The education and empowerment has allowed me to be an advocate for myself and many others.” – Karen North, Cervivor Community Administrator
“I am grateful that I have cervical cancer sisters that understand my journey, they understand my lows and frustrations because they have been there. At times, as a cancer survivor, you can feel alone because people don’t ‘get you’. With the Cervivor community, I know that I am surrounded by women that understand me.” – Kimberly Williams, Cervivor Community Administrator
All of you strengthen our resolve to keep doing the work of bringing cervical cancer out from the shadows. Thank you for being a community of light for so many. The world is listening and together our voice is strong and steadfast in its resilience. We are Cervivor and ending cervical cancer is within our reach.
Each November we celebrate those who we as cancer patients and survivors consider to be our heroes, our confidants, and our lifelines. They are the ones who continue to show up day in and day out, day after day to help us navigate the ups and downs of our complicated cancer world.
No one can walk through this alone, nor should they. We know all too well how it takes a village and then some. Being a caregiver isn’t just loving someone, it’s digging through your own fears, using all of your heart, and becoming the light for the both (or group) of you.
Our community shared the people in their lives who make things brighter and kinder, and who continue to be there for them in every way. On this special edition of Teal and White Tuesday, we are standing on our mountain tops shouting our gratitude and love to all our besties, our mothers, fathers, sisters, children, nieces, partners — every loved one who has held our hand, drove us to endless appointments, rallied meal trains, helped with childcare and never hesitated to be our Teal and White Tuesday cheerleaders. You are all amazing and so very appreciated!
My best friend and husband Sota! This is the photo of when he made me laugh while I was struggling with radiation in the waiting room at the radiology clinic. He was there for every single appointment with me. ~ Anna
My brother Mario! He traveled from Mexico City to drive me to chemo appointments and take care of me afterward. He is the best nurse ever! ~ Gilma
My mom and sister were here with me a couple of days after my hysterectomy. They surprised me with their new shirts! ~ Livvy
My tribe have been my biggest supporters (along with my family of course!) ~ Kimberly W.
My husband has been so strong for me even though he was suffering too. ~ Alexia
This is my best friend Erica, she calls me her platonic wifey. We’re going to be Golden Girls together. She delivered me to radiation appointments, brought me food, and entertained my teen throughout my treatments. ~ Laura
My hubby Richie. He always puts that smile, calmness, and sense of peace in this journey. Our daily: Laugh at each other and with one another! ~ Arlene
My brother Luis took care of everything from rides to another city for my treatments and surgeries, to taking me out for a burger (without my doctor’s permission!). He made me laugh and made sure I always felt the love. ~ Karla
My tribe… I couldn’t do this without my husband, family, and friends. ~ Jenn
Dave, Braylon, and Kiara. They are my world! ~ Tammy
I had a village too, but my main two people were my sister and my mom and to this day, they still are. They came to every single appointment and treatment. Three years on now and my sister does my dressings every week and both help me when fatigue still hits. I’d be lost without them. ~ Kim
My Mom! She came from Puerto Rico to be with me during my surgery and all my treatments. It was a blessing having her; she made sure I was eating well and resting. She lived all of this experience with me and it made us bond even more afterward. Words cannot describe the love I have for this woman. ~ Carmen
We thank our community for sharing such wonderful lights with us and we encourage you to continue to share your caregivers with us all year round. Send us a photo and a small blurb and we’ll highlight them!
Did you know we have a special shirt just for caregivers in our online shop? Check them out here.
Cervivor and St. Jude partnered for an all-HPV cancer survivors school to train patient advocates representing anal, cervical, oropharyngeal, vaginal, and vulvar cancers.
The weekend kicked off with a welcome reception and special message from Founder and Chief Visionary, Tamika Felder. The evening was filled with conversation and an energizing music compilation from DJ Malone. (You better believe there was some dancing to be had – ehem, Jason).
Team Cervivor: Morgan Newman, Tamika Felder, & Heather BanksRooftop Welcome ReceptionDancing Jason
Saturday morning started bright and early with information-packed sessions ranging from learning the basics of HPV and cancer to finding your voice and expanding the survivor advocacy footprint.
We heard from Andrea Stubbs, MPA and Administrative Director of St. Jude’s HPV Cancer Prevention Program and the important work that St. Jude has been working on in the HPV cancer prevention space. Dr. Heather Brandt gave us the latest data on HPV, HPV cancers, and what advocates need to know.
Andrea Stubbs, St. JudeJulia Neely, Andrea Stubbs, Duha Magzoub, & Dr. Heather Brandt of St. JudeGraphic Facilitation Artist, Kat Gentner
Lead Cervivor Educator, Heather Banks and Tamika Felder led the attendees through how to make their survivorship count. Their session was followed by a patient panel moderated by oral cancer survivor, Jason Mendelsohn, and featuring anal cancer survivors, Lillian Kreppel and Calvin Nokes, as well as cervical cancer survivors, Karla Chavez and Kimberly Williams.
After lunch, Visibility Coach and Founder of the REP Network, Roshanda Pratt ignited the advocacy flame in helping the attendees identify their stories in just three words. Roshanda is known for her mantra of “Visibility is power” and she has helped us understand that “Transparency is the new currency” and that it is progress over perfection in our advocacy that matters most.
Tamika Felder, Cervivor Founder & Chief VisionaryCervivor Lead Advocacy Educator, Heather BanksTamika Felder, Roshanda Pratt, & Dr. Heather Brandt
We heard from Dr. Vetta Sanders Thompson, an E. Desmond Lee Professor of Racial and Ethnic Diversity and Associate Dean for Equity, Diversity, and Inclusion at Washington University in St. Louis. She gave us a psychological, data driven presentation over addressing the common concerns about HPV vaccination with an interactive activity.
The day was rounded up with a presentation by Cervivor Community Engagement Liaison, Morgan Newman on how to expand the survivor footprint followed by a session of what’s next – leaving the attendees with a call-to-action. The attendees became graduates, receiving a certificate of completion and a celebratory reception including a live band at Beale Street Landing.
Survivor Panel Moderated By Jason MendelsohnDr. Vetta Sanders ThompsonMorgan Newman, MSW
Cervivor, Inc. and St. Jude are incredibly honored to have hosted 30 HPV cancer survivors now turned patient advocates from across the nation (and a few international advocates too).
We invite you to join us on March 3, 2023 for International HPV Awareness Day to help spread awareness, screening, and prevention of HPV cancers. Mark your calendars now!
Cervivor, Inc. would like to take this moment to thank St. Jude for becoming an impactful partner in furthering the mission to end HPV cancers.
WASHINGTON, D.C. – In February 2022, the American Cancer Society announced they would be launching two national roundtables: one for cervical cancer and the other for breast cancer. This was a response to President Biden’s call to action in reducing cancer incidence and death rates faster. This initiative is to bring together leading organizations and experts in the cervical and breast cancer space to drive progress and improve the lives of cancer patients, as well as their families.
Improve and Align Communication: Develop effective communications about cancer screening that reach all populations; and expand and strengthen National Cancer Roundtables that include a focus on cancer screening.
Facilitate Equitable Access: Barriers contribute to lower rates of cancer screening initiation and the recommended follow-up observed among many populations in the United States; there is a need to provide and sustainably fund community-oriented outreach and support services to promote appropriate screening and follow-up care plus increase access to self-sampling for cancer screening.
Strengthen Workforce Collaborations: Team-based care has the potential to improve implementation of cancer screening but in order to accomplish this, supportive policies and a commitment to team-based care approaches are needed which include the empowerment of healthcare team members to support screening plus having the opportunity for training and residency programs; and expanding access to genetic testing and counseling for cancer risk assessments to catch cancer early.
Create effective health IT: Providers and patients alike are faced with more information than they can process in a reasonable amount of time. Health information technology (IT) has potential to help providers, patients, and healthcare systems quickly access and effectively use clinical knowledge and patient-specific data.
Cervivor Founder and Chief Visionary, Tamika Felder was invited to speak on behalf of cervical cancer patient advocates and their families to increase awareness, impact change, and work collectively towards eliminating cervical cancer. Tamika and Cervivor, Inc. have been long-standing influencers on the panel since 2003, helping to provide vision as well as patient stories. She shares, “For me it is personal. My legacy won’t be the lives that I bring into this world but the lives I will save.”
First Lady Jill Biden attends an American Cancer Society Roundtable event, Monday, October 24, 2022, in the State Dining Room of the White House. (Official White House Photo by Adam Schultz)
Recording artist and cancer prevention advocate, Mary J. Blige shared the personal impact cancer has had on her family in recent years and why she has dedicated so much time to awareness. She phrases a key message, “I’ve dedicated time to making people understand their health is their wealth and urging them to make it a priority.”
American Cancer Society CEO, Dr. Karen Knudsen states, “We at the American Cancer Society represent all 1.9 million Americans that hear each year that they will have cancer and we are absolutely resonating with the goal of the Cancer Moonshot to end cancer as we know it.”
Dr. Karen Knudsen, Tamika Felder, First Lady Dr. Jill Biden, and Mary J. Blige
Dr. Knudsen also brings to light that breast cancer still remains to be the second leading cause of cancer death for women in this country and number one for Black and Latina women. 14,000+ women are diagnosed with cervical cancer and over 4,000 will die from the disease. Black and Latina women are again, impacted at nearly twice the rate as their Caucasian peers.
First Lady, Dr. Biden emphasizes there should be no woman left behind. There is an absolute need for collaborative efforts including the patient advocate voice because this impacts us all. The focus is to put patients and their families at the center of their cancer – from diagnosis to survivorship and we are rewriting the narrative of cancer.
“We don’t have to be afraid of cancer anymore!”
First Lady Jill Biden bids farewell to singer Mary J. Blige, American Cancer Society CEO Dr. Karen Knudsen and cancer survivor Tamika Felder after an American Cancer Society Roundtable event, Monday, October 24, 2022, in the Red Room of the White House. (Official White House Photo by Erin Scott)
We stand with the First Lady, the American Cancer Society, and so many more leading organizations. We are committed to this mission as we are reminded of the daily impact in our community of a cervical cancer diagnosis, the treatment and difficulties in survivorship, and of those lives that have been lost from a preventable disease.
Patti’s Mother, Tia (who would have been 94 on 10/22/22), & Abuelita
I was born in the US in the late 1950s. Both of my parents were born in Nicaragua, Central America. Even though I was born in the US, my grandparents raised me in Nicaragua until the age of eight. At that time, I returned to live with my parents in New York City. Making my first language Spanish. Growing up, we never spoke about menstruation, sex, or anything related to reproductive health at home. It was taboo. Schools did not teach sex education in those days either. I learned as I went along, hearing bits and pieces from my friends.
Even though I am educated and well-rounded, sex education was a subject that I did not know much about. I only knew the basics. You might be thinking this is sad – Perhaps– but this is the way Latino parents have raised their kids for many generations. I wish someone had taught me about bodily development, and the broad variety of topics related to sex and sexuality, to have gained the skills needed to manage my sexual health.
Even today, in Latino households we do not have parents talking enough about sex education with their children. There has been improvement, but there is a lot more we can do.
Unfortunately, cervical cancer in some cultures, including the Hispanic culture, is perceived to be a cancer of sexually promiscuous people. I believe this causes great stigma and shame. We can change this perception by first knowing the facts of cervical cancer, and educating others and ourselves. Educating the next generation properly is important. Teaching them about all the risks that exist, besides getting pregnant at an early age.
At the time of my diagnosis, I felt ashamed of having this type of cancer. I did not know too much about it nor did I know how I got cervical cancer. I had to educate myself so I could properly explain it to my family. My shame resilience came with time. You need to remember that a particular belief passed from generation to generation is hard to change and hard to let go.
Patti Murillo-Casa, Dr. Jason Wright, & Tamika Felder at a Pap Rally & Run by Cervivor, Inc.
Today, I am an advocate and an educator on cervical cancer. I educate women, especially Latinas, on the tools we have to prevent this type of cancer. Latinas are the demographic most diagnosed with cervical cancer. The two main reasons why are a lack of knowledge about the disease, and a lack of screening. However, we can take steps to change the fate of many.
Over the past 10 years, I have teamed up with my oncologist to provide free cervical cancer screenings for women in NYC who may not have medical insurance.
I was declared cancer free in 2009, and I use to visit my oncologist every three months for check-ups after that. In 2010 when I became an advocate, I use to come in and tell my doctor about all the work and advocacy I was doing in NYC.
We developed an awesome patient/doctor relationship; he saw my enthusiasm and passion for the mission of eliminating cervical cancer. One day, during one of those visits, he said, “Patti I want to help you and the Cervivor organization with your mission. Let’s offer FREE screenings to uninsured women.” I looked at him, smiled, and the only thing that came out of my mouth was, “Are you serious?” He smiled back and said, “Yes, let’s make it happen.”
However, before we set up a date, he needed to put everything together. He needed to make sure that the lab was on the same page to not charge patients for processing the Pap/HPV test. He also needed to gather medical staff to come in on their day off, and donate their time.
This was amazing. I could not have asked for a better offer. On May 19, 2012, we held our first FREE screening event. It was a huge success. We have been offering this program annually since that first day and this year marks our 10-year anniversary.
We have also collaborated with other departments within the hospital, and for the past four years, in addition to cervical cancer screenings, we have offered FREE mammograms and FREE colon cancer screenings for uninsured men and women in the community.
Dr. Jason Wright and his staff at the Division of Gynecologic Oncology at Columbia University/NY Presbyterian Hospital are committed to this mission. Dr. Wright has always been supportive to the Cervivor organization and my advocacy work. I am so thankful to him and his staff for putting these events together. Because of them, hundreds of women have been screened throughout the years, and many lives have been saved.
Patient advocates and their oncologists can create a partnership together to reach more women in the community, and offer education, screenings, support, or mentorship to women that need these services.
Cervivor is grateful to Patti for bringing her passion and talents for wellness and cancer prevention to our mission. She is a vital part of what makes us #CervivorStrong. Thank you, Patti!
These are the words that every cancer survivor fears – not only because they mean the cancer is back, but because it has spread to other parts of the body, which has the potential to make treatment a highly complex endeavor.
I was a couple of months shy of the 5-year mark of living cancer free when I received the scary news. And because life is funny that way, it happened right on Halloween, my favorite holiday. Since I received instructions to go to the hospital immediately for an emergency neck neurosurgery, I donned a realistic “ER Patient” costume that day, a neck brace and all.
How did I get there, you might ask? I went to all my 3-month, 6-month, and 12-month checkups. I followed all the post-treatment instructions carefully, from quitting alcohol and sugar to using the dilator mostly every night. I exercised regularly and practiced meditation. My last pap in October 2020 was clear.
It all started with acute pain in my right shoulder, which I thought was work-related tendinitis (I’m a graphic designer, and I use a graphic tablet daily). The pain traveled to my back, neck, and left shoulder – it felt like my joints were on fire. I started having high fevers and chills and woke up every night drenched in sweat.
I went to see my primary doctor, who diagnosed pneumonia. I finished the 10-day antibiotic treatment, but the pain continued. He then ordered special labs and scans. The inflammation markers were up high, and the scans revealed a large mass in the right lung. A more specialized CT scan showed many lytic lesions (bone cancer) all over my body, the more significant ones in a couple of cervicals, right next to the spinal cord. The delicate nature of those lesions was what prompted the surgery.
A lot happened after my Halloween adventure: I had a lung biopsy, a blood transfusion (due to dangerously low hemoglobin levels), and a few nightly trips to the ER that introduced me to opioids and the glory of morphine shots. But that way of dealing with physical pain destroyed my gastrointestinal system, so I ended up in the hospital for what felt like an eternity. Once there, I was on suicidal watch for a few days. But after my first chemo treatment, my oncologist was hopeful – my age qualified me to get a new treatment after chemo. Moreover, there was a good possibility that I could get into remission in a couple of years.
The doctors sent the lung biopsy to quite a few places for research. The results indicated it was cervical cancer. Again. I must confess I found it amusing that I had cervical cancer in my cervicals.
The journey has not been easy. The first thing I did when I was able to get out of my head was to contact a few of my Cervivor sisters. I’ve received greeting cards, care packages, soft hoodies and beanies that I wear all the time (Monterey is chilly!), and loving support, even from sisters who don’t even know me! I’m forever grateful to this wonderful community of strong women who encourage me to keep going.
I’m not officially cancer free yet, but I no longer experience the excruciating pain that comes with bone cancer. After eight rounds of chemo, most of my lesions are getting healed, and the lung tumor is shrinking significantly. As a result, I went from being bedridden to walking with a cane to going on light hikes and walks. I love my new eyelashes, eyebrows, and pixie haircut. In addition, I’m receiving immunotherapy every three weeks, so I now have the energy to go back to school, keep up with my work as a freelance designer, and enjoy quality time with my family and friends.
As October is officially here, I’m starting to plan my Halloween costume. This year I refuse to wear a scary one – I want something inspiring and hopeful. Maybe I could be a “Cervivor Advocate.” It’s payback time.
Gilma Pereda is a metastatic and recurrent cervical cancer patient located in sunny California. She is a graphic designer and translator who wants to lend her skills to a good cause – an effort to educate women and men about HPV and what they can do to prevent it, to promote vaccines for children, and to motivate women that are living with cancer today to feel empowered.
September gave us an opportunity to bring more awareness to multiple gynecologic cancers that affect over 604,000 people globally every year. As below-the-belt cancer activists, Cervivor knows how important it is to talk about cancers that have less visibility than others. The more we share, the more awareness we raise.
October is Breast Cancer Awareness Month (BCAM) and there was a time when no one was talking about cancer, especially ‘boob’ cancer. It was organizations like Susan G. Komen and the National Breast Cancer Foundation that paved the way. Yet, despite the sea of October pink, an estimated 685,000 people globally died from breast cancer in 2020. Inclusive healthcare and continued awareness is still needed to reduce this number.
Here’s where both above- and below-the-belt cancers are similar: They are all destructive and take far too much from us. Many of us struggle to accept our changed bodies; the physical and mental toll it takes to rediscover ourselves. We are all in the ‘cancer club’ regardless of what color our awareness ribbon reflects and conversations help break down taboos and stigmas.
This month we are sporting pink and supporting our fellow breast cancer survivors and patients all while waving our teal & white. The Cervivor community has members who are both breast and cervical cancer survivors – like Karen and Laura, who make sure to share their stories, especially in October and again in January for Cervical Cancer Awareness Month (CCAM).
We also support our community members – like Kadiana, who knew she was at risk for the BRCA-1 gene after losing her mother to ovarian cancer. We have a commitment to support inclusive cancer prevention efforts because by doing so, we elevate those less discussed cancers like cervical. We will call upon our cancer community friends and partners come January to spread our message of cervical cancer prevention, so let’s give a voice to breast cancer awareness and prevention this month!
The 13th patient advocacy training known as Cervivor School was held in Music City U.S.A. or better known as Nashville, Tennessee. This was an intimate group, made up of first-time and returning attendees and we hosted some of the most dynamic speakers to educate and empower our 2022 class.
Like any other Cervivor School, we kicked it off with a special Welcome Reception where attendees were able to mingle and get to know each other right off the bat. We heard inspiring words from Heather Banks, Lead Advocacy Educator, and Tamika Felder, Cervivor Founder and Chief Visionary.
Tamika and Heather kicked off the first day with a dedication to and moment of silence for those who have died from their cervical cancer and are no longer able to share their stories. It was a powerful reminder that our mission to end cervical cancer is not over and there is still much work to do. Tamika also shared how putting a human face to cervical cancer is a critical part of our cause and why we should share our stories.
Later we heard from Community Engagement Liaison, Morgan Newman, Lead Cervivor Ambassador, Carol Lacey, and Cervivor Ambassadors, Karla Chavez and Karen North. They shared what it means to be a patient advocate, how they fulfill the role to make an impact, and what advice they have for others in mastering survivorship and advocacy. Then we heard from Michelle Whitlock, author of “How I Lost My Uterus and Found My Voice,” and how she decided to use her voice after cervical cancer followed by empowerment groups and a session on life during and after treatment with Heather.
Cervivor Ambassadors Carol Lacey and Morgan Newman led an interactive session, Healing Through Writing, in honor of Erica Frazier Stum who thought of and led the session in the years prior. After listening and sharing each others’ creative writing, we ended the day by creating an individualized advocacy action plan to be put in place after leaving Cervivor School.
Day two is our Medical Day where we get the latest and most advanced information on the human papillomavirus (HPV), the HPV vaccine, and cervical cancer screening. We started the day by understanding cervical cancer screening guidelines, the impact of the patient perspective, and how important it is in our advocacy work. It was a great reminder from Dr. Lia Bos that our stories are powerful and when we partner our voices with physicians and clinicians in the field, we leverage our impact even more. We also heard from Andrea Stubbs, MPA, representing our community partner, St. Jude, and their HPV Cancer Prevention Program. She shared her work and provided ideas and information about supporting HPV vaccination efforts so we can powerfully advocate for vaccination as prevention!
We were inspired by Catherine Tyler as she led us through a discussion on living with and through significant illness and treatment while staying true to our aspirations and our authentic selves. And Tamika and Heather helped our attendees practice potential advocacy scenarios, establish advocacy norms, and finalize our advocacy action plans to put in place after leaving Cervivor School.
Lastly, we rounded out the Cervivor School weekend with a graduation ceremony for our attendees and Tamika awarded not one but two Cervivor Champions for 2022!
Jenn is a metastatic and recurrent cervical cancer patient currently undergoing treatment and is still leading and advocating despite it all and Kimberly continuously shares the importance of vaccination and cancer screening when it comes to HPV, cervical cancer, and communities of color.
Our newest Cervivor School graduates are empowered, ready to share their stories, and eager to connect with leaders in their local communities. Team Cervivor cannot wait to see their advocacy in action and how they decide to make their survivorship count!
In the months of September and October, we are celebrating our Hispanic heritage.
History supports our struggle and power to overcome difficulties. We are brave, passionate, and colorful people. We also come from many beliefs and cultures, some of which can be obstacles.
It is a reality that many Latinas die from a disease that can be prevented. The lack of education, the lack of specialization of our doctors, and the HPV taboo are our challenges to overcome in order to win the war against cervical cancer and other cancers caused by the Human Papillomavirus.
I was 34 years old when I was diagnosed and in a country where our sex education is given in science and biology classes, but discussed little outside the parameters of our classrooms. Being able to accept and share that my cancer was caused by HPV gave me freedom. I talked about it with my family, and I remember having the feeling of, “What are they going to think of me?“ They really didn’t care. Their only concern was my health.
Being diagnosed with a cancer caused by HPV carries with it a taboo in my culture. We often do not discuss this with anyone because we do not want them to judge us, much less reject us. Many times we struggle alone with feeling guilty. This stigma must be overcome. We must trust that we will find support, in our family, in our friends, and/or in faith. The way to overcome this issue is to talk about it without fear, so that the next time we hear about cervical cancer, it’s because it is being prevented. We want our communities getting vaccinated and that we don’t wait ages for our doctor appointments.
A doctor told me, “the vast majority of us will have an HPV infection at some point, what we need is to remove the stigma behind those three letters and attack it.”
This resonated with me. It made me feel that even though I didn’t know much about what was happening to me, it wasn’t my fault. It is something that I had to go through, and I must overcome it.
Karla with her Madre & Abuela
Once I took away the power that guilt had over me, I began to fight. I have had the joy of having my family as my support team. We have fought with a lot of faith and love. Which is one of the characteristics of our Hispanic culture, keeping us together as a family no matter the situation.
I am also sure that my doctors were the answer to my prayers in my moments of fear. I received 8 chemotherapies and 35 internal radiation treatments. After a total hysterectomy and colostomy surgery, I have made it my mission to never shut up about what I went through. Because to someone out there, something in my story will resonate and they will act. Either getting vaccinated, scheduling their cancer screenings, or vaccinating their children.
I’m still here to celebrate life and the month of Hispanic heritage. I’m still here to tell you that cervical cancer can be prevented. That there is a vaccine that can save the lives of hundreds of thousands. I’m still here to talk to everyone about the vaccine and prevention.
When I was diagnosed, I wanted to fight and win. Now that I celebrate 5 years without evidence of disease, I want to fight and overcome the stigma, the lack of education about HPV, and its relationship with various types of cancer.
After attending Cervivor School I learned how to share my story, how to speak up, and be the voice that can resonate with someone else.
I have had the opportunity to participate in talks at universities, high schools, religious groups in my country, and in workplace meetings, and always that I can to each person that wants to listen.
I want everyone to get the HPV vaccine, to make their cancer screening appointments so that together we can dream of a Honduras and a world free of cervical cancer.
Fellow cervical cancer survivors/patients, I leave you with a mission: Share your story, because your story will resonate with someone.
Visit Cervivor.org to share your story with an easy-to-follow template!
Karla Chavez is from Honduras and she is a civil engineer and amigurumi enthusiast. Karla is a 5-year cervical and thyroid cancer survivor and a proud ostomate. She is a Cervivor Ambassador, a 2019Cervivor School graduate, a Cervivor Champion Award recipient, and is a key support to our growing Cervivor Espanol community.
My name is Jodi Madsen. I am an active cervical cancer patient, in both treatment and spreading awareness about the importance of women’s health and HPV. I was diagnosed with stage 3C2R adenosquamous cell carcinoma of the cervix in February of 2021. I live in North Dakota with my husband, who serves in the United States Air Force, and our two little boys. North Dakota isn’t really your prime real estate for any medical specialty, so if you’re going to go looking for gynecologic anything, you’d have the same amount of luck finding oceanfront property outside their practice. I travel ten hours to Omaha, NE for every single appointment since there are no qualified persons within a reasonable range. My insurance had some input on that decision and actually was kind enough to make it for me! While I love my care institute, I am sad to miss out on living closer to women in similar situations and being able to participate in support groups.
From the beginning of a cancer diagnosis, there is one word that has always lingered close by. Lonely. I think the bottom line of that comes down to knowing I can’t convey my feelings correctly to those I love and that is incredibly isolating and frustrating. There are so many things that instantly change when you become the patient that you don’t even realize. In an effort to de-alienate myself I started a blog. I started it for many reasons, the biggest was to hold the connection with my friends and family, as well as nurture new connections and share with women unfortunate to be met with the same diagnosis should they run across it in the future. That blog gave me a spark and was always something for me to do to pull me out of the gallows. Believe it or not, even the most annoyingly chipper of us end up down there quite often. I haven’t written much lately and the “Oscar” radiating off me is uncanny.
One day last fall, I was scrolling Facebook in a large cervical cancer support group, and I saw someone asking for help with writing blogs for CCAM (Cervical Cancer Awareness Month) for a smaller organization. Nervously, I mentioned that I have been writing blogs about my experience. I liked the organization’s page, joined the private group, and began freaking out. Who do I think I am, thinking I can use this voice? Until I saw the community I just stepped into. Each question is answered with care and love no matter the nature. Every single woman is encouraged to share their stories. Not a writer? They have prompts ready! I was so happy seeing the patient being the center light here and what looked like genuine friendships showing up all over the place. What is this wonderful island offering me so much hope after less than ten minutes of interaction?! Cervivor!
Not long after these first few interactions, a day came along with an event called, Creating Connections. It was a Zoom meet-up with a speaker and two Cervivor Ambassadors acting as moderators to keep the conversation loosely based on parenting with cervical cancer. It was my first interaction of the sort that was like a support group and it was wonderful! There were about 15 women present and after we took turns giving small introductions to our stories, we were able to listen to some wonderful pointers on how to explain things to our little kiddos regarding treatment, medications, time away from home, and other key confusing factors for them.
That night I met a pal, Caroline. Caroline stood out because she has little children too, and lives near where my husband is from. Just like that, with a two-second snippet of her introduction, I knew I had found a person to meet in real life when I am in that area. Because I joined that online meet-up last October, I now have a friend to show me a new coffee shop and get away from the family for a bit when I join my in-laws for a week. How cool! Let’s add this to the list of incredible feelings I get from being a part of the Cervivor community. The power I feel that I have gained from the support of both the Cervivor organization and the Cervivors themselves is insurmountable! Talk about a boost!
As time has passed and treatments have come and gone, I have become less active in both my own blog and posting in support of Cervivor. Many reasons have contributed to my absence, but because of the family environment, I can always hop back in like I never left. Much like I did a few weeks ago when attending another Creating Connections. I was on the road, so I had to be muted for most of it, but getting to listen to my friends brought in a brightness I needed so deeply in my soul. What I didn’t know I was needing, as a cherry on top, was the number of attendees waiting to introduce themselves to the rest of us. Several of the Creating Connections meet-ups I have been to have been about the same 12-20 people in attendance. We are able to make deeper connections and learn much more about each other when it is the same smaller group of us, but there is an absence of diversity.
So when I logged on to see nearly 30 women in attendance, I was in shock! (And also a little curious about how long it would take us to get through introductions! Ha!) There were women with brand new diagnoses and women who have been a patient for months and had just found Cervivor. In every case, each new introduction tugged on and successfully pulled some tears. Where I was nearly a year ago, here these women are fulfilling what I had dreamed for the reach of Cervivor. I have wanted to see more women finding this incredible group sooner in their journeys, and it was happening right before my eyes. Every time I thought about these beautiful women that came off so incredibly strong right out of the gate, the tears overtook my hard-shelled heart.
I know how hard everyone in the Cervivor community works behind the scenes, and it’s amazing the amount of things you see put together. The number of things they are constantly working on would blow your mind. To be associated with these hard-working ladies is an honor, and to be able to recognize the growth of the group is so cool! I’m not sure if it is success that you can measure by attendance and participation, but it sure feels like it. Thank you, Cervivor, for giving me another home that just fits, and the opportunity to see the growth and success, as well as take pride in such an incredible organization. You help me live through so many seasons, and with this one, I am beaming with pride.
Jodi is the recipient of Cervivor’s 2022 Brittany Wagner Social Media Advocacy Award and is a passionate advocate. She shares the highs and lows of living with cervical cancer and brings light to our community.
When the calendar turns to September, it’s a good reason for anyone touched by gynecological cancer to share their story because September is Gynecological Cancer Awareness Month (GCAM).
For those of us in the Cervivor community, September is a significant opportunity to pull out our advocacy boots (and dust them off if they haven’t been used in a while), put below-the-belt cancers in the spotlight, and pick up our momentum to carry us through the remainder of the year.
Why is GCAM so important?
Late-stage cervical cancer is being diagnosed at higher rates in the United States. Historically, cervical cancer has disproportionately impacted Black and Hispanic women. In this study, the overall prevalence of the disease was higher in Black women and there is a large increase in diagnoses for Non-Hispanic White women (CNN).
Uterine cancers are on the rise, especially in Black women. It is quickly making its way to becoming the third most common type of cancer among women (NY Times).
Fertility and quality of life are still impacting those diagnosed with gynecologic cancers (Oncology Nurse Advisor).
Intersectionalities in sexual orientation as well as race and ethnicity show significantly lower odds of undergoing routine cervical cancer screenings (Health Day).
Reducing social detriments can improve quality of life, increase survival rates, and close the gap in racial disparities (ASCO Post).
We know there are so many more to list which is why Cervivor continues to be actively engaged in gynecologic cancer awareness. We’re committed to sharing our stories, spreading awareness, and showing the people impacted by gynecologic cancers. We’re facing these disparities head-on!
How can you get involved this GCAM?
Share Cervivor content during GCAM. We will have plenty of graphics, articles, and other resources to share with your social media network, across all platforms. Make sure to follow us on Facebook, Twitter, Instagram, TikTok, and Pinterest.
Wear Teal and White on #TealandWhiteTuesday. Don’t forget to tag us on Instagram and post your photos in the comment of our Facebook posts!
Share your Cervivor Story. Have you shared your story with us on Cervivor.org? Sharing your story on our site is a powerful tool for getting your story out there. Our template guides you with questions, to help you share your cervical cancer story in a way that is personal to you. You can share as little or as much as you like. Once you have submitted your story and it is published, you will be able to share the link with others. Need help getting started? Send us an email at [email protected]!
Contact local media to share your Cervivor story. Many times, local news stations, newspapers, and neighborhood publications are looking for content. Reach out to them and share your story. If your story is on Cervivor.org, share the link with them when you reach out.
Host a Cervivor Meet-Up. Meet-Ups are local gatherings of Cervivors, networking and sharing in a social environment. You can hold a Cervivor Meet-Up in a coffee shop, restaurant, bar, or anywhere you feel is a welcoming and relaxed place for Cervivors to talk and share. If you’re interested in hosting a Cervivor Meet-Up in your area, contact us at [email protected]. *Cervivor recommends following the latest CDC recommendations for any gatherings.*
Become a Partner in Purpose. From care team to community member, your role in cervical cancer awareness, treatment, support, and prevention is of the utmost importance to us. Interested? Sign up here.
August is Black Philanthropy Month! Join us today to give back to Black-led nonprofits. We’ll be highlighting the important work we’re doing in the cervical cancer space, members of our community, and ways we’re trying to eliminate disparities for Black women and cervical cancer.
Black women are impacted, disenfranchised, and disproportionately impacted by healthcare affordability and access, by lack of comprehensive sexual health education, and by historic mistreatment of people of color, particularly Black people, by the healthcare community.
“You know, we talk about breast cancer. So, we have to talk about below-the-belt cancers like cervical cancer, too. We have to show the faces of people who have cervical cancer.” – Tamika Felder, Founder & Chief Visionary, Cervivor, Inc.
We are addressing the disparities in sharing our stories, increasing screening rates, encouraging vaccinations, and participation in clinical trials. Research tells us that when cervical cancer is detected and treated early enough, women have a 93 percent five-year survival rate.
We like these numbers and must rid ourselves of the disparate stats harshly impacting Black women. Every woman deserves to be screened, to receive equitable treatment, and to know they have a fighting chance at being a Cervivor! Let’s fight collectively to protect, prevent and prevail!
In July 2022, I was invited to my first NRG Oncology semi-annual conference as a newly appointed Patient Advocate. Many of you might be wondering, who NRG Oncology is and what they do?
I’ve never had the opportunity to attend a large oncology conference like this before. There were so many emotions that ran through my head as my colleague and I rushed hurriedly through the building to locate our next sessions to attend. One thought that came to mind was “the why,” like why am I here? After attending the Patient Advocates forum I found that my why never changed. It was for the patients and for our community.
Sitting in the meeting encouraged me and helped me realize that all the patient advocates desire the same thing: we want change. We are equipped with the knowledge to make a difference. We have lived through this experience personally. This meeting was easy (at least easier than I anticipated) as I spoke about my cervical cancer story and my “why” for patient advocacy.
Just as I thought, “This is simple,” the next morning I sat on the panel for the Cervix and Vulva Sub-Committee with physicians, researchers, and so many more experts. I sat down next to the committee chair, Dr. Charles Leath. It was at that moment I said, “This is not simple.”
I was overwhelmed with emotion but soon felt confident because I understood the presentations as they related to clinical trials because I went through treatment as a patient. This one moment shifted my thoughts from ordinary to extraordinary. I realized that my voice mattered and it was important. The NRG Oncology semi-annual meeting was an opportunity I will never forget because it was a reminder that your “why” should be at the forefront of your patient advocacy.
Morgan Newman, Community Engagement Liaison
I was a patient advocate that was chosen on the other side of the NRG Conference with the GOG Foundation patient advocacy efforts. To understand their organization, let’s look at the history behind the Gynecologic Oncology Group:
It was founded in 1970 at the American College of Obstetricians and Gynecologists.
In 1993, the GOG Quality of Life Committee was formed and patient-reported effects of chemotherapy was the main protocol for their clinical trial development to continue to improve patient quality of life.
And in 2014, their trial GOG-240 showed improved survival rates when bevacizumab was added to chemotherapy for advanced cervical cancer.
Now, this is only a brief glimpse into what this group has accomplished. I was incredibly fortunate to have the opportunity to be one of two Mary “Dicey” Scroggins Patient Advocacy Travel Award recipients. Through this scholarship, I was honored at the GOG Foundation dinner, attended working committee meetings, and learned from the dedicated professionals leading the work in developing clinical trials.
What I learned during this conference was that the GOG has set the standards for cervical, endometrial, and ovarian cancers. They continue in partnership with NRG Oncology to strive for a better future for patient care and outcomes in clinical trials. This experience has made me feel like I was truly part of that process.
When I was diagnosed with a metastatic recurrence of cervical cancer in 2016, I never would have imagined being where I am today as a patient advocate. I really didn’t understand or know how my voice could help make a difference but every time I have an opportunity to attend and interact with experts in the field, I am quickly reminded just how important it truly is and how far I have come since then. Sometimes these feelings are hard to put into words. It can be overwhelming to experience this as a survivor and a patient advocate but it’s something I appreciate and I am forever grateful for.
Kimberly Williams and Morgan Newman are both cervical cancer survivors turned patient advocates. Kimberly represents her state of Texas while Morgan is in Iowa. They are both passionate about making sure the patient voice is heard.
Preoccupied much? It happens. Especially when caring for yourself and others, mourning loved ones, slogging through a global pandemic, and attempting to check off all of the things from your personal and professional to-do list. Because we were quarantined and protecting ourselves, we probably missed a few important benchmarks, library books that may have been due, or our annual dentist appointment may have fallen off the calendar. We know first-hand that everything simply can’t be done. But Cervivor does want to help you prioritize the following three things before summer’s out. (Don’t worry, you’ve got two more months to go!)
1) Stay up-to-date on screenings.
Did you know? Anyone with a cervix is at risk for cervical cancer. Each year, 14,100 individuals will be diagnosed and 4,280 will die as a result of cervical cancer. This disease is the only type of cancer caused by HPV that can be detected early by a recommended screening test. It is also highly curable when found and treated early. Knowing this we will continue to share information on risks, prevention, treatment, and resources.
Your Cervivor story is unique. It helps others to feel seen. And it helps us feel heard – when we are ready to use our voice, of course. Sharing your story is also a crucial aspect in educating the public, caregivers, medical professionals, and even those funding cancer research.
Seeing and hearing your lived experiences amplifies what others, too, may be going through and helps to further research, offers a personal accounting of what cervical cancer looks like, and most importantly – empowers us more and more to thrive. Take a look at these beautiful testimonies, and consider sharing yours with Cervivor.
3) Start vaccinations early.
According to the June American Cancer Society 2021 HPV VACs Impact Report, about 3 to 4 million HPV vaccine doses were missed. “ACS health care partners maintained rates for 9- to 13-year-olds, growing shot series initiation by 2 percent for ages 9 to 10 and shot completion by 2 percent for age 13.”
Cervivor is happy to partner with organizations like St. Jude’s HPV Cancer Prevention Program, the American Cancer Society, and the National HPV Roundtable (to name a few)- all of which continue to help prevent HPV by increasing HPV vaccination rates for this age group. HPV vaccination can prevent more than 90 percent of these cancers if given at the recommended ages.
Our new mantra is “start at 9.” Giving a strong recommendation for the 9-year-olds in our lives will increase vaccination success, according to the National HPV Roundtable. When we take our young people to health providers at age 9, it provides ample time to complete the HPV series before age 11, which is when they receive their Tetanus, Diphtheria, Pertussis (Tdap) and Meningococcal (MenACWY) vaccines. More than 75% of U.S. parents have chosen to protect their children from HPV cancer with the HPV vaccine.
Since August is National Immunization Awareness Month, let’s raise that number even more! Together we can end cervical cancer, once and for all!
Take a look at how survivors in our community have shared their stories and are making a difference:
Need some additional help in prevention messaging? Take a look at the resources in this toolbox created by the National HPV Roundtable, and share with your networks, friends, and families. This impacts everyone, and with your support, we can change the course of cancer.
The purpose of the HALT method is to help us feel better when we are feeling upset and it is often used when we are feeling emotionally off-centered. The HALT method addresses how our state of being and human needs might be linked to making hasty decisions – with words, actions, and thoughts. When one or more of these areas are out of balance, we will likely struggle with (mental) health and our overall well-being.
Let’s break down each letter of HALT:
The H stands for hungry: It is well-researched that human behavior changes when we are hungry. Hunger causes us to value the short-term over the long-term and leads to hastiness with decisions. Chemicals in our brain also change to heighten anger when we are hungry.
If you discover the cause of not feeling well emotionally was hunger, you can take a momentary break from whatever you are doing, eat a handful of nuts or dried fruits, rest and enjoy them as much as you can, and allow your body and brain come back to baseline. As your body is coming back to baseline, you will think more clearly and feel calmer. This helps avoid hasty remarks and snappiness and alleviates uncomfortable moods.
The A stands for angry: Anger can be an unpleasant and damaging emotion, but it is normal to feel angry – everybody does at one point or another.
Just because you feel angry doesn’t mean there is something wrong with you. However, feeling chronic, persistent anger is unhealthy and becomes a problem when you have a hard time letting it go and it seeps into other areas in your life.
Some heathy ways of coping with anger can include stress management, spirituality, prayer, and meditation. You may find it helpful to keep a record of the things or people that trigger anger. You can then reflect on whether your anger is justified and take the “heat” out of the situation.
The L stands for lonely: When we find ourselves cut off from contact with other members of our social group or community, we can feel lonely, which can be very unhealthy. It is no wonder that social isolation has made our social interactions more difficult during the pandemic.
When we are surrounded by positive influential people who we have a strong connection with, we are less likely to engage in negative behaviors. Of course, we can be lonely even when we are surrounded by a lot of people, but that makes meaningful relationships even more important.
Finding social groups that share similar interests as you is a good first step. Maybe your daily routine is causing you to retreat into your shell. If so, shake it up a little! Calling a friend or visiting a loved one might be just what you need. You can also simply go out in the world by taking a walk, running errands, or going to a coffee shop rather than hiding from everyone. Reach out and connect with others who want to see you happy and healthy.
The T stands for tired: Making sure we get enough sleep at night can help to improve not only our physical well-being but also our emotional health.
When we are physically and emotionally tired, we are more likely to engage in a negative thinking pattern. The amount of sleep we need varies with age, but the U.S. National Sleep Foundation’s guidelines recommend between seven and nine hours of sleep per night for an adult.
The quality of sleep is also important. The brain only “recharges” properly through Rapid Eye Movement sleep (REM). This high quality of sleep level can be hampered by drinking alcohol or caffeine-based drinks in the evening or by trying to deal with difficult issues late at night.
Screen use, including checking notifications on your tablet or cellphone, can also have a negative impact on your sleep. Remember that it is best to stop using screens an hour before going to bed.
The HALT method is a wonderful reminder of the simplest things we often forget to do to take care of ourselves. Just check in with yourself periodically and ask how you are feeling in these four categories. Your check-ins can occur daily or weekly, while other times you may check in with yourself hourly. How often you use the HALT method is totally up to you!
Jessica Martin was born in Germany and holds a M.Sc. in Psychology. She moved to the United States in 2018 and was diagnosed with cervical adenocarcinoma, stage 1B2 shortly after her move. Jessica is passionate about the mental health aspect of healing.
When my chemo and radiation treatments ended in July 2013, I struggled to return to my normal life, including my career in agricultural field research. Physically, I no longer had the stamina to work in a corn field for up to ten hours a day. Mentally, I began to question if I was even passionate about my job anymore. I had just survived cervical cancer, so I didn’t want to waste another minute in a job that wasn’t fulfilling. I felt lost and knew I needed to find a new career path that would give me a better sense of purpose.
I thought hard about what I was passionate about and how I could turn that into a career. I knew I was passionate about cancer advocacy but didn’t know how to apply that to a job quite yet. I found the field of cancer registry interesting but knew little about it. I thought about cancer registry off and on over the next few years but kept dismissing the idea of becoming a cancer registrar because it would require two years of schooling to become certified.
Cancer registries are important because they reduce the burden of cancer on the community by improving patient outcomes and ensuring funding for public health cancer prevention programs. A cancer registrar is responsible for collecting, maintaining, and reporting cancer data on all cancer types diagnosed and/or treated within a hospital or other medical facility. This data is entered into a cancer registry system, or database, that is then reported to state and national cancer registries.
Cancer registry data is used by many, including oncologists and other doctors to compare cases for treatment plans, researchers for clinical trials, public health officials for evaluation of cancer prevention programs, policymakers to determine state and national funding of cancer control programs, and cancer organizations for statistics (like the American Cancer Society).
In 2020, amid the pandemic and working from home, I decided to go for it and enrolled in an online program to become a certified cancer registrar. I am now one year into the program and am enjoying every class I take. I feel like I have a sense of purpose that was missing.
Someone once told me that cancer registrars impact cancer advocacy, policy, and research. This is so true! Knowing that my future job will impact cancer in these ways is exactly the fulfillment I am looking for in a career. It may have taken an unexpected cancer diagnosis, a lot of personal reflection, and seven years to figure out a new direction for my career path, but by the Spring of 2023, I’ll achieve my goal of becoming a certified cancer registrar. You too, can start achieving your goals in 2022, by focusing on your passions with a willingness to persevere.
Emily is an eight-year cervical cancer survivor who was diagnosed with stage 2B cervical cancer at age 30. After cancer, Emily didn’t realize she even had an advocacy voice until she attended her first Cervivor School in 2016. Today, she is a patient advocate and Cervivor Ambassador who shares her cancer story to raise awareness for ending cervical cancer and to educate others on the importance of cervical cancer screenings and prevention. Emily is the recipient of the 2020 Cervivor Spark Award and the 2022 Cervivor Champion Award. She plans to graduate with her certification in cancer registry in spring 2023.
When I was originally diagnosed in 2018, I decided that I wanted to recover from surgery and move on with my life. I didn’t want to hear the word “cancer” anymore. But in April 2019, my life changed as I was informed I had a reoccurrence of cervical cancer and I decided I wanted to be a change agent.
I started with my community by sharing my story with those connected to me via social media but in 2021 I felt like it just wasn’t enough. After speaking with the Cervivor community, I decided to redefine my patient advocacy in 2022.
Here’s a snapshot of how my 2022 has gone so far:
January 2022 I participated in an interview with NPR (National Public Radio) in reference to cervical cancer among Black women that was aired in Georgia and via their social media handles. I also joined the Texas HPV Coalition to raise awareness as it relates to the HPV vaccine.
February 2022 I was a panelist for the Black Women and Cervical Cancer Webinar hosted by Cervivor. My children and I were also a part of a PSA for HPV Awareness Day through the National HPV Vaccination Roundtable and Association of Immunization Managers that was featured on television and in physician’s offices in Tennessee and also via their social media handles.
March 2022 I completed volunteer training with the American Cancer Society which allows me to share my story locally through ACS CAN. I also completed a radio interview with Zakiya Jenkins who is based in Iowa in reference to cervical cancer in the African American communities. This interview was aired in Iowa and on Ms. Jenkins’ social media handles.
April 2022 I spoke at the Women of Color, Inc. brunch as it relates to cervical cancer among Black women, prevention, and early detection. I also spoke at YES Prep secondary school through the American Cancer Society where I shared my story and encouraged families to research the HPV vaccine.
May 2022 I spoke at Green Valley Elementary school through the American Cancer Society where I shared my story and encouraged families to research the HPV vaccine for their children. I was also chosen to be a Cervix committee Patient Advocate through NRG Oncology.
June 2022 I spoke at the HPV forum with the American Cancer Society, shared my story at a National Cancer Survivor’s Day event in Charleston, SC, and was a panelist for the Tigerlily Listening Summit powered by Labcorb, in which I shared my story and shared my experience as a patient including the disparities among African American women.
As a result, the last six months have blown my mind and have shown me just how much our stories have the power to create change. I encourage all of you to share your story. Be a change agent for this community and get active because you can redefine your advocacy in 2022!
Kimberly is the 2022 Cervivor Rising Star recipient, a joy-sparking, active member of the Cervivor community who is moving mountains.Thank you for all you are doing to end cervical cancer!
My cervical cancer story began when I was 24 years old. I had graduated from a local dental assisting program and worked in the field for only a couple of years when I was diagnosed on World Cancer Day 2015. I was completely devastated that cancer was happening to me! I mean, I knew I had a cervix but I was naive to the fact that I could get cancer “there.” And wasn’t it most common for older people, not younger people, to get sick? That’s when I realized how gravely wrong I was. Didn’t I just witness a high school friend succumb to cancer just a year before? She passed away at the young age of 27 and I truly thought that was going to be my destiny. I didn’t know anyone else my age that was going through it.
All throughout my treatment, I placed blame on myself for getting cancer, and even though I felt that deeply, I knew I wanted to do something more to help others. I wanted them to know about cervical cancer and how Planned Parenthood saved my life with their preventive screening services. I wasn’t sure how to start advocating or sharing my story, so I started spreading awareness by handing out little ribbons I made. (Some of my friends still wear them to this day).
If you would have told me back then I would become an award-winning patient advocate, I never would have believed you. You see, I’ve suffered from social anxiety throughout my entire childhood and adult life. It wasn’t until I was finished with cancer treatment that I found out about Cervivor, signed up for Cervivor School, and grew into the patient advocate I am now.
I have been involved with the organization since 2017 and have been presented with some pretty incredible opportunities – including employment by the organization. I started in 2021 when everything had been pretty virtual but this year, in-person events have started happening more frequently. Team Cervivor, consisting of Cervivor Founder, Tamika Felder, and myself, made the decision to attend the annual meeting of the American Society of Clinical Oncology (aka ASCO). As a first-time attendee, I can say I was completely blown away! This event was massive and full of oncology’s leading cancer researchers, clinicians, thought leaders, industry partners, advocates, and so much more!
We kicked off the week-long conference with a breakfast meeting in which we were able to connect with so many people – putting names to faces that we’ve been working with via Zoom meetings and emails for the last few years. We had a constant line of people waiting to talk with us about our work and hear our stories. It could have been the lack of caffeine but it really didn’t hit me until midway through that breakfast – the impact of our work as patient advocates is crucial in the oncology world. This made me even more proud to be working for the organization that gave me my voice.
Dr. Martina Murphy was one of these people who expressed just how important our work is including our Comfort Care & Compassion Program. She says, “Cervical cancer is a disease where we need so much more attention and work. The impact of this group is powerful.”
We continued to attend meeting after meeting and heard a consistent message across the board: we are dedicated to putting equitable patient care as our priority. We heard how patient advocate voices have a seat at the table and how we are leading engagement for some important topics across social media platforms. The realization hit me once again: We make a difference every day. Patient advocates matter.
Now, we made sure to celebrate a little while we were in Chicago too. The Sunday of the conference was a day recognized as National Cancer Survivors Day and we had A LOT to celebrate: Tamika was 21 years cancer free and was given the most exceptional gift and I was just days from officially being 6 years cancer free. We made sure to spend time with some friends and partners – both new and old, to eat incredible food, and to take time to unwind.
It has truly been eye-opening and so rewarding to see the kind of impact my story has had in the last several years. It’s been a lot of hard work and it’s taken time to see the results. But I know it’s not just my story in this. It’s the collective of our stories pushing for the same mission: to end cervical cancer once and for all.
Morgan Newman, MSW, Outside of her Community Engagement Liaison position at Cervivor, you can find Morgan nurturing her relationships with local community partner organizations like the American Cancer Society Cancer Action Network (ACSCAN), the Iowa Cancer Consortium, and serving as a board member for Above and Beyond Cancer. Learn more about Morgan at Cervivor.org.
Alexander Hamilton. General Colin Powell. Shirley Chisolm. And Kadiana Vegee.
These Caribbean-Americans are worthy of a shout out, and Cervivor wants to shout from the rooftops Kadiana’s name because she is the epitome of beauty and pride. As we celebrate Caribbean-American Heritage Month, we want to share Kadiana’s survivor story which reminds us of true beauty.
Having lost her mother to ovarian cancer, and her father to prostate cancer, Kadiana and her sisters took genetic tests to learn where their own health stood. While her sisters were in the clear, Kadiana’s tests revealed the BRCA 1 gene mutation. She quickly chose to have preventative surgeries.
“I had a double mastectomy without reconstruction, and I also had to have my ovaries and my fallopian tubes removed,” explained Kadiana. “ … The decision that I made was not just for myself and to stay alive, but it was also for my kids.”
The most frequent cancers in the Caribbean are prostate, breast, lung and bronchial, colorectal, and cervical cancers, according to BMC Cancer journal. Further, the five most frequent sites for cancer deaths include lung and bronchial cancers, prostate, colorectal, breast and stomach.
To be specific, Black-Caribbean women have a high prevalence of late-stage breast and cervical cancer diagnosis due to a low prevalence of screenings, according to dignity, shame, stigma, or ignorance in avoidance of breast and cervical cancer screenings among women of Caribbean Descent, published by the Open Journal of Social Sciences.After conducting focus groups, researchers concluded that a lack of trust in the health system, stigma, and shame contributed to avoidance of cancer screening – all similar to what we see and experience for ourselves.
While Kadiana acknowledges cancer will “always be a part of my life, from the long lasting side effects to the constant fear of reoccurrence,” her fervor to thrive, her beauty and her pride in taking back her life can be seen, felt, and heard. We are elated to know that Kadiana is a Cervivor advocate willing to share her story, boast her war scars, and champion the need for rights, resources and self advocacy.
“It felt like a blessing because I knew and I had the option,” said Kadiana about making her decision. “I stand unashamed … It’s not how I look on the outside. It’s how I look on the inside, and I really do feel beautiful.”
Inclusivity is the buzzword of our times right now, and Cervivor is here for it! It’s our hope that the practice of being inclusive doesn’t fizzle out like a trend, and that cancer survivors are included in the inclusivity population.
This hope also rings true when it comes to LGBTQIA issues, rights, and the cancer community. We are bringing this up during Pride Month (Happy Pride!) because many LGBTQIA+ community members who have and have had cancer do not feel welcome or understood in mainstream support groups, and transgender survivors have been specially excluded, according to the Cancer Network.
During a Cancer Network podcast interview, Dr. Don Dizon, who works on ensuring higher levels of gay and transgender participation in clinical cancer trials said, the medical community needs to “[support] people who have felt misaligned in medicine—people who have been the subjects of discrimination. Honestly, you hear the anecdotes of people who are treated unkindly, not to put it mildly.”
Many of us know the host of feelings that drench our minds the moment we hear a cancer diagnosis. The days, weeks, months, even years after, we are still overcome with scores of emotion including isolation, and feelings of not wanting to belong, are natural and to be expected. However, the actual act of being excluded – even if just a feeling of not being considered – is unacceptable and can be detrimental to our psyche, which, in turn, impacts physical health.
The 2018 LGBTQ Health in Iowa report tells us that scientific evidence has shown that sexual and gender minority individuals are more likely to smoke, be overweight, and have a greater risk of certain cancers. Further, this group is less likely to receive appropriate health care than heterosexual and cisgender peers. We’re not having it!
That’s why we are happy to boast a few organizations and individuals whose missions include providing equitable resources, highlighting the voices of LGBTQIA+ survivors, offering a sense of community, and training caregivers to medical staff on inclusivity and its importance including Cancer Network, Escape, and One Iowa.
Photo Courtesy of Globeathon
“We need to do better for those individuals, so that they’re not delaying access to care [and] that they are participating in our screening programs,” continued Dr. Dizon, who is also director of women’s cancers at the Lifespan Cancer Institute, director of medical oncology at Rhode Island Hospital, and professor of medicine at the Warren Alpert Medical School of Brown University in Providence.
“At the end of the day, we as oncologists all want to do the right thing. This is part of doing the right thing.”
⚠️ This content may be triggering for some. Includes infertility and pregnancy. ⚠️
Dearest Cervivor Community,
Happy Survivorship Month! No matter where you land, it’s a reason to celebrate. Even if you’re just celebrating today. We all get so caught up in milestones. It’s hard not to. Comparisons are everywhere and we all just want so much more time. But what I’ve learned over the years is that each new day is really the greatest gift. One day at a time.
Beyond National Cancer Survivor Month, I’ve got a bunch of reasons to celebrate. June is also my birthday month (yay for birthdays!), and today marks the anniversary of my radical hysterectomy at Johns Hopkins in Baltimore, Maryland.
Twenty-one years! I remember when the hospital called to confirm my surgery. I was 25 years old, shocked and terrified that I wouldn’t get to see my 26th birthday. I pleaded with the scheduling coordinator to schedule surgery after my birthday. I thought, if this was it, I was at least going to celebrate one last time. But I didn’t get my way. My radical hysterectomy to rid my body of the cervical cancer tumor that was taking over was scheduled for June 14, 2001, at 7 am. I walked myself into the operating room, got up on the table, and woke up hours later – forever changed, both physically and mentally.
I didn’t know then how my own diagnosis with cervical cancer would play a role in my own life, as well as the lives of others. I couldn’t even imagine my current role as a patient advocate, and leader in the cervical cancer patient advocacy space. It certainly wasn’t a goal of mine, but I just created what I wished I’d had. This “work” has been life-changing, fulfilling, difficult, triggering, and yet one of the greatest joys of my life. I’m proud of what we’ve built together as a community. My dedication to our cause is greater than ever before.
The last few years have been challenging to say the least. We’ve weathered so much together, and now we can include an ongoing pandemic to that list. During the pandemic we kept the community going with virtual events. In fact, it was during one of those virtual events that I met someone so very special from our community, Ginny Marable.
Ginny joined us for several events and was even a speaker at our September 2020 Cervical Cancer Summit. While I was learning more about Ginny, unbeknownst to me, she was also learning more about me. She saw my true desire to be a mom, and the heartbreak that it would probably never happen due to my hysterectomy.
Fast forward: Ginny and her husband Sean began their path to parenthood via a gestational carrier. She shared their beautiful journey with us as a community, as well as on social media. When her twin boys were born, I was so elated for them, but if I’m honest, I also felt that familiar ping that I would never experience that moment. But I was just so happy for her, that feeling of sadness was fleeting.
Another short fast forward: Ginny reached out to me for a phone conversation. Never in my wildest dreams could I have known how that call would have changed my life. I mean, I haven’t even met Ginny in person – only through our virtual space. So, I’d like to make June even more memorable by sharing with my Cervivor community at large that Ginny is giving me an exceptional gift that I never imagined could be bestowed on me – motherhood.
Ginny has simply taken the power and love of this community to an entirely different level. We shared our unique story with Insider and you can read about it here.
My hope is that you will feel all the love, and our “Cervivor Spark”. But simply, thank you, Ginny!
With Love and Gratitude,
Tamika Felder Chief Visionary, Cervivor, Inc. 21-year Cervivor Mom-to-be
That first season of a TV, Netflix, or cable series is a total experiment. Producers wonder how the characters will resonate with the target audience. Advertisers are hopeful that their two-minute commercials and ads are crafted well enough to bring in sales. And actors cross their fingers that fans love each episode more and more, and demand a second season. The result: a cult following of a show that lasts for years, providing viewers the comfort of entertainment and solace.
While it may be a stretch, we can think about clinical trials in the same way. This method of medical research, is in fact, a pilot program for scientists to experiment, test, and prove what works, and what can result in medical breakthroughs – again, for the comfort and solace of those impacted by health challenges like cervical cancer.
You may have heard us at Cervivor championing the dire importance of clinical trials. We continue to stress the importance as this is the only way we can pave a way toward slowing down the loss of members in our community, thriving without having to lose parts of our bodies, and ultimately eliminating cervical cancer.
We said it before:
We need clinical trials to drive progress.
We need trials to determine the safety and effectiveness of every type of treatment.
And in order to determine that safety and effectiveness, we need volunteers.
We choose not to subscribe to the stigma around being a “guinea pig” or a “test dummy.” Without clinical trials, treatment, diagnosis, and prevention efforts are slowed down. The effectiveness of new medication, treatment, and therapy can only be proven through trial – and yes, error. Take a look at the thousands of trials around the globe currently recruiting patients, in addition to those that are active, completed, and terminated with results. Thanks to people including several of our Cervivor community members like Teolita, Erica, Jenn, and Linda much more work is being done daily to make sure our community – and the generation after us, and after them – can thrive.
“I decided that if this clinical trial was good enough for Jimmy Carter, it was good enough for me!” – Teolita Rickenbacker
It’s important to note that Cervivor advocates for cultural competence throughout our medical journey, including in the clinical trials process – and we should all be looking out for this. This means, making sure that the medical community understands, and is intentional about how they communicate with a diverse audience of women, whether Black, Brown, young, mature, and those who speak a language not native to their medical team. It is super important that the medical community, including those coordinating trials, speak different languages, and understand the experience of those who are part of a focus group. This important aspect aids in building and maintaining trust with those participating, which, in turn, helps us trust in both the process and the expertise of trial organizers.
This process takes a lot of teamwork: scientists work on hypotheses, patients report on progress and challenges, and doctors monitor outcomes. The result: an increase in clarity, more answers, more awareness, more options, and longer lives. Have a discussion on clinical trials with your care team and support system. Learn more with these recommended resources: https://www.webmd.com/cancer/cervical-cancer/cervical-cancer-clinical-trials https://www.clinicaltrials.gov/ct2/home
If you have experience with a clinical trial and want to share it with us, contact us at [email protected].
Happy Asian American and Pacific Islander Heritage Month! This month, we pay tribute to the generations of Asian Americans and Pacific Islanders who have shaped America’s history. Asian American and Pacific Islander Heritage Month originated with Congress in the late 1970s and is recognized and celebrated worldwide today!
We are celebrating by honoring some of our resilient Cervivors and continuing to spread awareness to reduce health disparities within the community but first, let’s take a look at some of the glaring statistics.
In 2022, the American Cancer Society released their Cancer Facts & Figures report stating the rates of new cancer cases and the rates of cancer deaths among Asian Americans, Native Hawaiians, and Pacific Islanders varied widely, mostly because of significant differences in exposure to cancer risk factors.
Of these findings, they found that:
Cancer is the leading cause of death in the Asian and Pacific Islander population in the US.
In 2022, an estimated 14,100 cases of invasive cervical cancer will be diagnosed and about 4,280 deaths will occur in the US.
Large variations in cancer occurrence within the API population reflect diversity in terms of geographic origin, language, acculturation, and socioeconomic status.
According to the US Census Bureau, in 2020, 20% of Black and 17% of Hispanic/ Latino populations lived below the poverty line, compared to 8% of non-Hispanic White (White) and Asian populations.
In addition, in 2019, 10% of Black and 19% of Hispanic/Latino populations were uninsured, compared to 6% of White and 7% of Asian populations.
Cervical cancer incidence rates among Cambodian, Vietnamese, and Laotian women decreased dramatically from 1990 to 2008, a change that has been attributed to increases in screening and treatment in these groups.
The use of the Pap test within the past 3 years is highest among Filipino women (83%, the same rate as in non-Hispanic whites), and lowest among Chinese women (66%).
The 5-year relative survival rate for cervical cancer is 66% overall, but ranges from 39% for Black women 65 years of age and older to 79% for White women under 50, and from 92% for localized-stage disease to 18% for distant-stage.
Meet some of the Asian Americans and Pacific Islanders in our Cervivor community who want to change these statistics!
Meet Arlene, a Washington state Cervivor who recently shared her story to help make a difference in her community. She says, “In honor of Asian American and Pacific Islander Heritage Month and Mental Health Awareness Month, I am humbled to share Part 1 of my cervical cancer journey! It’s time to RISE UP and be a voice! I am no longer ashamed!”
Meet Gina, a cervical cancer patient residing in Maryland. She just learned a year ago about her cancer diagnosis less than a week after turning 32, and 13 weeks after learning she was pregnant. Hear directly from Gina as she shares her story in our CervivorTV video below – We know you will appreciate, empathize with, and want to share with your networks.
We are also super excitedtohighlightCalifornia Cervivor, Joslyn Chaiprasert-Paguio. We love Joslyn because of her energy and advocacy, and if you’ve listened to the first episode of Season 2 of the Cervivor Podcast, you know we are happy to announce that she will be taking over as the host of the podcast! Joslyn will be bringinga new perspective as a Gen Z-er and as a recurrent cervical cancer survivor. Join us in wishing Joslyn success in this new role and get ready for a new season of robust conversations to help us cope, heal, learn and thrive. Don’t forget to visit the Cervivor Podcast on your preferred listening platform and subscribe to get alerts about new episodes!
The Asian culture rarely discusses below-the-belt talk, awareness of, and the knowledge of how important their checkups with their healthcare providers are and they are highly underrepresented in our public health data, however, storytelling has made a difference in the population by increasing the awareness of HPV, cervical cancer prevention screenings, and vaccination. Studies have shown an increase in a more positive outcomes in health data.
Beyond Arlene, Gina, and Joslyn’s stories, visit Cervivor.org to meet other cervical cancer survivors repping the Asian and Pacific Islander communities and share their stories this month with your networks!
What’s your story? Are you a cervical cancer survivor? Your story matters. Share your cervical cancer story and make a difference. Click this link to follow our easy-to-use template.
In anticipation of the Season 2 release, we’re taking a look back on Season 1 of the Cervivor Podcast hosted by our very own Founder and Chief Visionary, Tamika Felder. It was a season where we laughed, cried, and learned from guests during Cervivor School 2017. We give honor and observance to those featured in these podcasts that are no longer with us. To be able to hear their voices, laughter and transparency is a special treat for us. We hope you think so, too.
“Everybody’s voice makes a difference,” says Erica Frazier Stum whose school-aged son knows his mother may be gone sooner than she should be. This podcast episode is a special treat hearing Erica’s voice posthumously who passed away in 2019.
Balancing school, work, her grandmother’s dementia, and an unexpected stage 4 cervical cancer diagnosis, Teolita Rickenbacker says she found her calling amidst an overwhelming period. “It’s nothing wrong with having cervical cancer; it’s nothing wrong with having any kind of cancer. It’s just how you define it.” Listen to “The Will to Live: How Faith Got Her Through a Cancer Diagnosis.”
In “Acceptance of Death: How She is Making Her Story Matter,”Lisa Moore shared her story of diagnosis, kidney failure, and coming to grips that once she passed, her 30-year-old husband would likely start a family with someone else. “I have accepted death. I’m done being stuck, I’m done being treated. I’m ready to just live my life … it’s a different kind of hope.”
Lynn Tromp talks about cervivorship globally and being open to new experiences, “I trusted my medical doctor. He spoke to me with confidence. Even though it was a trial, he spoke to me with confidence,” said Lynn who lives in South Africa. Listen to “Cancer in another country: A Tell-all From South African.”
Season 2 of the Cervivor Podcast is moving past the archives. Join us on Friday, May 13, 2022 for the Season 2 Episode 1 release!
We’ll be welcoming our first guest, Joslyn Chaiprasert-Paguio. Joslyn was diagnosed with the Human Papillomavirus (HPV) at the age of 18 and with cervical cancer at the age of 24. She shares her story to encourage women and future generations, like her daughter, to advocate for themselves and make their health a priority. You’ll also hear what else you can expect on this Season of the Cervivor Podcast.
In honor of the start of Women’s Health Week and for Mother’s Day, Cervivor kicked off the week with an open letter to young mothers going through cervical cancer treatment. Mother’s Day is a day that brings a lot of feelings up for us in the Cervivor community and it’s a reminder that motherhood is defined so differently for every single one of us.
This year’s Women’s Health Week theme is “Forward Focus: Achieving Healthier Futures Together.”
Now is the time to put an emphasis on scheduling those screening and vaccination appointments, to put your mental and emotional health first, and to maintain and cultivate relationships with friends, family, and ourselves.
How do we focus on building a healthier path forward?
Screening and Vaccination 101 Take the time to schedule your annual physical and other health appointments. Have a conversation with your medical care team about any vaccines or preventive care you may have missed due to the pandemic. Check off your list of preventive tests which include cervical cancer screenings, mammograms, bone density scans, stress tests, cholesterol screenings, blood pressure screenings, physical exams, and other health screenings. Don’t let the cost of preventive care stop you, there are several programs available to help with this.
Mental and Emotional Health Make time to unwind and focus on things you enjoy. Finding healthy ways to help you manage stress levels like meditation, yoga, and reading can help maintain balance with mental and emotional health. If you notice changes in your mood, behavior, and thinking that cause disruption in your day-to-day life, check in with your medical care team for further assistance. You may also want to keep these resources in your toolkit for future reference.
Nourish from the Inside Out Eating a well-balanced diet can go a long way in a healthy path forward. Check out everything you need to know about healthy eating and dietary guidelines here. If you’re a cancer survivor and are looking to for support in leading a healthier lifestyle beyond cancer, join our private Facebook group Survivor Slimdown.
Friends and Family Stay connected with your friends, family, caregivers, and community. Talk with people you trust about your concerns and how you are feeling, it can truly help things feel less scary.
Just as different as all of our cancer journeys are, so are our parenting styles and choices. My children were ages four and seven when I wrote this letter. They did not know their mommy had battled cancer twice during their short time on Earth. One day I will tell them the whole story and I hope they draw strength from it. But for now, I am so very thankful I was able to attempt to preserve their innocence throughout my treatments. They knew I had to go to the doctor often for my “tummy.” They were six months and three years old at the time of my original diagnosis and ages three and six at the time of my recurrence.
They knew they had to be careful with my arm because of my PICC line. Upon reflection, I know I drew, and continue to draw, my strength from knowing they need me. They are the very reason I managed to smile through it all. Now that they are a few years older, they have some understanding and knowledge simply because of my cervical cancer advocacy efforts and fundraising events. They both enjoy sporting their teal and white and proudly bring me drawings or things they find that remind them of cervical cancer awareness ribbons.
Dear Young Mom Going Through Treatments,
You are their safe place; their steady fortress of love, their ever-present cheerleader. Your kisses make all of their boo boos better and your hugs melt away all of their cares. A glance from you can make them feel as though they can conquer the world.
Though they haven’t a clue, they are your total source of strength during these days.
I see you, and you are doing an amazing job.
I see your brow wrinkled with worry for them. Worrying if you are handling this season of life the right way, worrying about them overhearing adults at school talking about their mommy’s cancer, worrying about what their tiny lives could be without you.
I see you grabbing your wig or hat, lathering concealer over your chemo-ridden raccoon eyes, and mustering up a smile to appear normal in the eyes of your children.
I see you planning your appointments strategically so as not to miss a baseball game or dance class. I see you insisting the doctor’s office squeeze your weekly chemo session in on their jam packed Wednesdays because there are no after school extras to be missed. I see you biting your tongue and fighting back tears while the unknowing tell you how great you ‘look’ to be going through treatments and how wonderful it is that you ‘feel’ like being out at that ballfield and dance studio.
I see you soaking up as much rest as you can during their school hours and timing your medicines just right so you can make a futile attempt to be present during homework, dinner, baths, and story time.
You just want to make sure they get every ounce of the’ normal you’ there is.
Though you don’t believe it now, your tiny sources of strength could never see you as anything less than their beautiful source of unfailing love.
Though they don’t know it now, one day they will. One day they will look back, and realize just how beautifully and courageously strong you were for them.
You can do this.
Strength & Love from A Mom That’s Been There
Tracie is a mother of two amazing boys, and along with her husband, they spend their time enjoying the beauty of Alabama. Tracie is a Cervivor School graduate, Cervivor Ambassador and a well-seasoned Lobby Day advocate.
I always thought that I’ve done very well in building up resilience, taking care of my physical and mental health, since that is basically what I do for a living. I am a Psychotherapist and am specialized in Cognitive Behavioral Therapy (CBT). I love the CBT approach in working with clients since it is a here-and-now approach, is time-limited, and is structured. I offer individualized treatment plans for each client that outline clear behavioral goals, as well as take an active role in coaching my clients by directing their therapy and assigning homework.
After undergoing a biopsy, my OB/GYN told me on my daughter’s 2nd birthday, “Unfortunately, it’s cancer”. I just sat there, repeatedly saying, “No, that can’t be true!”. I completely went into freeze response. It was like an out-of-body experience, while I was standing on the Edge of the Abyss, all around me was complete darkness. As I was shaking and crying, all I could continuously say was, “No, that can’t be true!”.
(The definition of Fight, Flight, Freeze or Fawn is the body’s natural physiological reaction to stressful events. It is activated by the perception of threat, quickly igniting the sympathetic nervous system and releasing hormones to reach the underlying goal of springing into fight, flight, freeze or fawn to decrease, end, or evade danger and to return to a state of calm and control.)
My OB/GYN’s office scheduled my first CT scan for three hours later and as my husband, who was thankfully with me at the appointment, brought me outside the office, I started throwing up while I talked to my sister on the phone telling her, “I have cervical cancer”.
At this point, I knew nothing about “my cancer”. Had it spread? Am I going to die? What stage am I? Will I see my girls graduate high school? Is it treatable? What is the chance that my cancer can be cured? What other tests and procedures do I need? How can I deal with that? I’m not the type of person that will be able to handle something like this.
The day after my diagnosis, there I was, sitting with all those thoughts, feelings, and emotions, not knowing what to do. I knew nothing anymore; I wasn’t even able to think. On this beautiful summer day, everything seemed to disappear into this deep fog surrounding me.
I, the psychotherapist, who always comes up with great treatment plans for all kinds of mental health problems my clients are dealing with, but who is now unable to even stop my own thoughts and worries. Wow, great job. I was disappointed in myself. I was disappointed in what my body had done to me by developing this cancer. And on top of that, I wasn’t even able to drag myself into a more positive state of mind. Hell, I could not even think one, clear thought.
So, when I wanted to cry, I cried. When I wanted to scream, I screamed. When I wanted to sleep, I slept. When I wanted to talk, I talked. And I went on walks, a lot of quiet, long walks. At one point, I went on Google and gathered information about cervical cancer. I reminded myself about one of the things I tell my clients, “Information is on the other side of fear”.
Then I realized that what is happening is grief. I’m grieving my cervical cancer diagnosis. I’m right in the middle of it and my psyche is doing what it’s supposed to do all on its own.
We usually reserve the word, grief, for loss, secondary to death. Well, that’s just one form of grief. Grief is an adjustment to loss. When we get our cancer diagnosis, that is loss. Loss of potential quality of life, loss of certain physical functionality. It may even be the loss of time. At some point, everyone WILL go into grief. However, not everyone will go through the stages in a prescribed order, there is no linear and predictable pattern, and we often switch back and forth between the stages.
The classical, six stages of grief are simply tools to help us frame and identify what we may feel during our cervical cancer journey:
Denial: Feelings of avoidance, shock, fear, confusion. Believe that the diagnosis is somehow wrong and holding on to a different reality.
“I feel fine.” – “No, this can’t be happening to me.”
Anger: Feelings of frustration, anger, anxiety. Faced with the new reality, looking for someone/something else to fault, to leash out.
“Why me?” – “It’s not fair.” – “How can this happen to me.”
Bargaining: Struggling to find meaning. Seeking to get out of facing the new reality by promising something to change or to do differently or seeking for help through a higher power.
“I’ll do/give anything for a good outcome/a few more years.”
Depression / Sadness: Feelings of being overwhelmed, helpless, hopeless. Settling into sadness and unable to move forward.
“Live will never be the same…” – “What’s the point of going on?”
Acceptance: Feeling of exploring different options, a new plan in place, moving on. Embracing the new reality and finality of what has happened.
“I’m going to be ok.” – “I can fight it.” – “I may as well prepare for it.”
The more we give grief space to run its course, the more likely we are to have a better outcome. Sometimes we feel guilty for taking too long to grieve. NO, WE DON’T TAKE TOO LONG! Emotions work their way through us, don’t fight them, don’t rush them.
Years ago, I went to a lecture about grief and the professor added “Finding meaning/Purpose” as the last stage of grief in the circle and that stuck with me. Now, I always add that stage for my clients because I have experienced it myself.
Finding meaning/Purpose:
Help other people with the same diagnosis by sharing your story
Write a book
Pull back from work/toxic people
Join an organization
Smell/water flowers
Take a walk every day
See the beauty of life
For me personally, finding meaning/purpose just started in November 2021 (yup, not too long ago), when I decided to participate in one of Cervivor’s Creating Connections virtual meetups. I’ve always been pretty private about my cancer diagnosis. I was terrified about this cancer, I just wanted it to go away, I did not want to share anything with anyone other than my closest family.
At this first meetup, I literally just listened to the other participants and there was so much hope, so much encouragement, and so many awesome ideas being shared for the upcoming Cervical Cancer Awareness Month (CCAM) in January, that I decided to participate in a second meetup. There, I started to introduce myself, shared a little bit of my story, and thought about ways to integrate some mental health ideas into CCAM.
Since then, I participated in Cervivor’s CCAM virtual activities and even spoke about self-care and mental health at the Cervivor Summit 2022. And today, here I am, continuing to find my meaning/ purpose.
“Cancer cannot cripple love, it cannot shatter hope, it cannot conquer the spirt.”~Author Unknown
Jessica Martin was born in Germany and holds a M.Sc. in Psychology. She moved to the USA in 2018 and was diagnosed with cervical adenocarcinoma 1B2 shortly after her move. Jessica is passionate about the mental health aspect for healing.
Today, we’re celebrating a special edition of #TealandWhiteTuesday. Our Founder and Chief Visionary, Tamika Felder is celebrating 21 years of Cervivorship!
Tamika was just 25 years old when she was diagnosed with cervical cancer on April 12, 2001. She endured a hysterectomy stripping her of her fertility, followed by chemotherapy, and radiation. Cervical cancer changed her life forever.
In 2005, she started Tamika & Friends, Inc. a nonprofit dedicated to cervical cancer survivors and their friends and family. At the time there truly wasn’t any support for cancer survivors and the Internet was just getting off the ground. Tamika needed support. She found the more she told her story, the more it reached other women. Tamika wanted to help empower others to share their stories and that’s how Cervivor was born!
But Tamika didn’t stop there. She understood her calling of living her life beyond a cervical cancer diagnosis. Over the years, she has continued to transform the lives of each person impacted by a cervical cancer diagnosis. Tamika not only empowers them to use their voice, but she teaches them that their pain can have purpose, and they have the power to create change.
Here are a few things she’s learned as she looks back on her experience with cancer:
I was a survivor from the onset of my diagnosis. Each day is survivorship. Sure, there are huge milestones. The first year, the magical number 5. But what matters is each day is another day from the one before.
No matter your faith (or lack thereof) cancer is scary. And it’s okay to be scared.
We all get by with a little help (or really a lot) when it comes to cancer from our friends/family.
You won’t ever be the same. As with any traumatic experience you are forever changed.
Accepting that cancer has changed you and living in the “new normal” means that you can move forward. Even if it’s at a slower pace.
Life is meant to be lived. And it doesn’t matter how much time. Sure, I’ve never be told that there is nothing left but what I’ve learned from others who have is that you have to live while you have life within you.
Surviving cancer doesn’t mean you have to live in a bubble. It also doesn’t mean you have to become a daredevil.
“My greatest lesson is that life comes with an expiration date — from cancer or otherwise. It matters what we do with our time here. Life continues to surprise me. I was diagnosed with cancer when I was 25. I’ll be 47 this year and life is still surprising me in the best way possible. I don’t know how many years I have left, but what I can tell you is that I am going to live in a way that says I survived cancer.”
– Tamika Felder, Founder and Chief Visionary, Cervivor
This is only asmall fraction of what Tamika has accomplished since she began her journey with cervical cancer and we couldn’t be more grateful for her resilience and leadership to create the community we now know as Cervivor. Thank you, Tamika!
Join us in celebrating Tamika’s 21 years of Cervivorship by: 1. Start living life for YOU. Don’t wait until something traumatic happens to start living life. 2. Vote for Becky’s video. People die of cancer. I’m blessed to still be here. 3. Donate $21 to Cervivor. 4. Schedule your cervical cancer screening. 5. Vaccinate your children and protect them from HPV-related cancers.
Me working as a dental assistant during my first diagnosis.During treatment for my metastatic recurrence.The day of my very last chemo.
For those who don’t know me, allow me to introduce myself. My name is Morgan Newman, I’m a social worker, and I’m a Cervivor! I was diagnosed with endocervical adenocarcinoma at the age of 24 and then I was “hit” again with a metastatic recurrence to my lungs. Throughout my whole treatment, I wanted to do something more – to share my story, to advocate so others didn’t have to go through this horrible experience. I made little teal ribbons which eventually were teal and white ribbons to be more accurate and handed them out everywhere I went. I wanted everyone to know that cervical cancer existed because inside I felt all alone.
Right after I finished up my recurrence treatment, I stumbled across Cervivor due to a hashtag. I thought it was so clever to use “cervical” and “survivor.” The post mentioned a patient advocacy retreat and listed off the learning objectives of: learning the latest about HPV and cervical cancer, how to share your story, and connect with others who get it. This aligned with my values and what I wanted to accomplish. I signed up and fundraised my way to Delray Beach, Florida and the rest has been history.
I graduated Cervivor School in June of 2017 and went back home to Iowa to start working in my local area as a Cervivor Ambassador. From that stemmed SO many opportunities that have helped me grow. While attending my second Cervivor School in Cape Cod, I was recognized by the Cervivor organization and was awarded the title of Cervivor Champion. I couldn’t believe it! Me?!
For the next two years, I continued to nurture those existing community partnerships and kept on building new ones. It was then I was recognized with two more awards from two other organizations. I still couldn’t believe it and to this day I am so proud of how far I have come. This leads me into graduating from the University of Iowa with a Masters in Social Work and bound to a Code of Ethics to serve others. I was offered a position with the organization and now I really can’t believe it. I work for the organization that gave me my voice after cancer.
Cervivor Champion 2018The Madison County Bras for the Cause Committee, Winterset, IowaDay at the capitol with ACSCAN
They say time flies when you’re having fun but really, where has the last year gone? My first year has been eye-opening yet so very rewarding. It has been a year of transition from a regular 9-5 career and volunteering in advocacy to a whole different world in the nonprofit sector.
Here are a few things I have learned along the way:
The mission is greater than just my own personal story. My passion for advocacy shifted from an individual level to an organizational mindset which is not an easy task (even for a trained social worker). These things can be presented as theories until we can actually put them into action. Sometimes we only understand something from our personal point of view and that causes us to only see a fraction of the bigger mission at hand. Our stories are powerful but they are so much more as a collective voice.
The work is hard. Even when you love your job, it can be mentally draining, exhausting, and at times…frustrating. Nonprofits are not like your regular 9-5, they come with some crazy hours including long days, nights, and weekends.
Teamwork makes the dream work. We have a creative, experienced mind and an organized, in-the-making mind. New and old ideas are able to be balanced, polished, and made into a reality.
We are a small staff but fulfilling a BIG reach. Only two of us are employed and are doing the work that other nonprofits are capable of doing with a team of 10-12 people. We are so proud of the partnerships we have been able to build on a global scale with our grassroots advocacy.
Communications are our #1 tool. I’m a generalist social worker trained in people in their environment and how systems work. I’m not someone who graduated with a specific communications or marketing degree but I’m willing to learn. I tend to bring various strengths from previous employment and life experiences to the table and it helps balance the work dynamic.
We are a community built by our community. Our community is diverse, rich in experience, and so supportive of each other. I’m really proud of all of our community members who have shared their stories, stepped up to advocate, and have extended their hands out to support others. Not to mention the individuals we’ve been able to reach thanks to our Comfort Care & Compassion Program.
Meet people where they’re at. Generally, everyone is doing the best they can at any given moment. It’s really that simple. Empathy and listening can go a long way. We see that firsthand at every Creating Connections support group meeting.
Advocates and Volunteers are everything. If no one shares their story, how can we truly make a difference? How can we put new policies and systems into place so we can continue to prevent others from going through cervical cancer, from HPV-related cancers, or worse, dying from a preventable cancer? We have the ability to be a part of that process and we have been able to accomplish so much together already. There’s so much more work left to do and we’re just getting started. Want to get involved? Sign up to become a Partner in Purpose.
Funding is crucial. Philanthropy isn’t just about giving away money. It’s about changing the world. Right now, we have over 604,000 individuals worldwide being diagnosed with cervical cancer every year with 342,000 dying from cervical cancer. Communities of color are dying at disproportionate rates and we are committed to closing the gap in cervical cancer disparities. I encourage you to consider a one-time donation to Cervivor or to become a monthly donor. There’s still so much work left to be done and we could not do what we do without your support financially.
Growth and development are everything. Always come in with an open mind and be willing to learn. Don’t assume you know everything, you’re minimizing your maximum potential. Don’t be afraid to step outside of your comfort zone.
We are far from perfect. In today’s fast-paced world, it’s insane to expect perfection (including towards yourself). You are bound to make mistakes and it’s okay. Acknowledge them, accept them, learn from them, and know we are always striving to do better than before.
Self-care is absolutely necessary to prevent burnout. Maintaining the motivation and stamina for this work with such a small team and the glaring reality of loss in our community can be difficult but the mission remains the most important thing to us and it keeps us going on a day-to-day basis. Having a passion for the cause can make it extremely difficult not to answer a message or email on your time off but it is absolutely necessary to prevent yourself from feeling exhausted, overwhelmed, emotional, and burnout. We are certainly following our 2022 campaign of Taking Care of You in 2022!
I’ve learned a lot in just a year’s time and I’m grateful for my job, to understand the work that is being done behind the scenes, to be able to sit on various advisory boards, research teams, to maintain and develop our programming, and to meet our partners and to hear their passion in the work that they do – it is all truly rewarding. Every time I am connected with someone in our community, every time I am connected to a family or friend honoring their loved one who has passed from cervical cancer, every time I see those statistics of diagnoses and cervical cancer disparities, I am reminded of just how important this work is. It keeps me humbled yet motivated for the next thing. I cannot wait to see what else the future holds for our Cervivor community and organization.
Morgan Newman, MSW, Outside of her Community Engagement Liaison position at Cervivor, you can find Morgan nurturing her relationships with local community partner organizations like the American Cancer Society Cancer Action Network (ACSCAN), the Iowa Cancer Consortium, and serving as a board member for Above and Beyond Cancer. Learn more about Morgan at Cervivor.org.
Whether referring to those who are influencing medical milestones in cancer research, the women who are thriving, or our loved ones who are now in our memories and forever in our hearts, Cervivor is proud to highlight the women who share their stories, rallying fists, and expertise that help us get closer to a cure.
And to be clear, this is not the pride that interferes with faith or recognition of a higher calling; This is the delight and fulfillment that keeps us here, fighting, sharing, educating and yelling from mountaintops that we can find a cure. So during this Women’s History Month, we want to acknowledge women (who, by the way make up nearly 70% of the entire world’s healthcare workforce), and shout out five women in cancer research and healthcare – in their own words.
Padmanee Sharma, M.D., Ph.D., of the University of Texas MD Anderson Cancer Center: “I feel like we’re right on the cutting edge of discoveries that will create incredibly good outcomes for our patients with cancer … Finally, people can see that what we’ve been saying for all these years about immunotherapy is correct. But more important, we can now deliver the hope to patients that we’ve been working so hard for.”
Rosalind Franklin, British chemist whose doctoral student took the infamous “Photo 51,” that first showed the iconic double helix of DNA in 1952: “ … Science and everyday life cannot and should not be separated. Science, for me, gives a partial explanation of life. In so far as it goes, it is based on fact, experience and experiment. Your theories are those which you and many other people find easiest and pleasantest to believe, but so far as I can see, they have no foundation other than they lead [cq] to a pleasanter view of life … ” Read more.
Dr Princess Nothemba Simelela, Assistant Director-General for Strategic Programmatic Priorities: Cervical Cancer Elimination: “I’m always an optimist. When you have a life and you have opportunities, we should strive to progress and share this enthusiasm with new communities. We must use this global commitment to elimination for national action. We can make a huge contribution to the lives of women who are less privileged and advantaged than we are. And move together towards a world free of cervical cancer … The most important message that we are communicating to everybody is to take this forward together, in one united push, and to maintain the momentum.”Read more.
Helen Coley Nauts—the daughter of Dr. William B. Coley, the Father of Cancer Immunotherapy (CRI) who helped advance her father’s work despite not having a college degree or scientific training: “You must be aware that no one else but me has so far made a detailed and painstaking study of all possible aspects of this form of treatment. Until such time as you may train a person with a more impressive medical background, I would suggest that you appoint me as a sort of registrar of information on the above mentioned Toxin clearing house.”Read more of Naut’s letters chronicling her advocacy toward a new path of cancer research in the 1950s.
Dr. Lillian L. Siu, Canadian oncologist, clinician scientist and recipient of the International Women Who Conquer Cancer Mentorship Award: “All of us have family members who are affected by the disease, by cancer. There’s always going to be a personal component to most oncologists that enter the field. You have to understand something about the heart, you have to understand something about the lungs … you almost have to be a jack of all trades. That’s what intrigues me about oncology and cancer medicine. And obviously, to make a big difference in cancer is going to be very rewarding because that’s going to save a lot of lives and make a lot of difference in people’s lives.”Watch more.
Learn more about our cervivors, who we, too salute, this month and share their stories with your circles! Have a story of your own? Share it with us!
In the 1970s, the White House made a concerted effort to research, educate and make gains around the prevention of cancer. President Nixon signed The National Cancer Act in 1971. State health departments began to receive grants to research ovarian cancer screenings in 1974. By 1979, the surgeon general published diet guidelines that aided in cancer prevention.
This was happening in my lifetime – well, some of it. I’m younger than I look (well, I’d like to think so), but I want to point out that while the study of cancer as an epidemic began in the 18th century, it has only been about 50 years that we’ve committed time, research, funds and our stories to help find a cure.
And there’s still work to do!
For Cervivor, cancer prevention is a daily endeavor. We host discussions, connect with cervical cancer patients and their families, and advocate for health policies. But in February, National Cancer Prevention Month, we go full force with our partners to shine a light on the need for more attention, research, and cures for the numerous cancer categories that continue to take away beautiful lives from our families, circles of friends, and networks.
Need some ideas on how to observe the month with Cervivor? We’ve got ideas but would love to hear yours too. Your voice matters in this community.
Tamika Felder and fellow “Cervivors”.
I’m passionate about using my voice to prevent not only cervical cancer but all types. Cancer in too many forms has touched my life, my parents’, immediate family, distant family, and people in my community. Cancer is a horrific thing, and I want to be a part of the movement. While we can’t prevent all cancers, cervical cancer has a first-line to prevention. I hope in the future we have more preventive ways to save people from all cancers, and I’m ecstatic to know that the White House continues to support and rally to “end cancer as we know it.”
Earlier this month on February 2, 2022, President Biden committed to reducing the death rate from cancer by at least 50% over the next 25 years. YES! He published a statement of support vowing to improve the experience of people and their families living with and surviving cancer and eradicate the disease. This commitment further propels me to do this work with our members and our partners.
In the words of President Biden this month, “It’s bold. It’s ambitious. But it’s completely doable.”
Tamika Felder is a 20-year cervical cancer survivor, an award-winning television producer, author, blogger, podcaster, mentor,motivational speaker, and nonprofit founder. By telling her story, Tamika inspired other women to start speaking about HPV and cervical cancer, which led to a network of survivors supporting each other and educating each other. From this network, Cervivor was born.
Teolita and her mom, Dr. Nina Rickenbacker Edwards
Teolita repeatedly told other women, “Do not let stigmas, lack of knowledge, or shame, prevent you from taking care of yourself. What I want all women to know is make sure you listen to your body and seek medical attention if something isn’t right.” She was a staunch believer that being assertive and advocating for yourself was half the battle around cervical cancer. Her mother, Nina, now carries on Teolita’s message. Teolita passed away in August 2019, after a five-year fight with stage 4 cervical cancer.
Despite the fact that cervical cancer is preventable and treatable, the National Cancer Institute (NCI) estimated that 4,290 women would die of cervical cancer in the United States in 2021. As the country observes Black History Month, it is especially poignant to recognize the fact that Black women throughout the U.S. are dying from cervical cancer at a disproportionate rate, according to a January Human Rights Watch report entitled We Need Access.
Courtesy:
Getting to the root of health disparity
This difference, linked with social, economical or environmental disadvantage, or health disparity, is posing a major concern for Black women in the state of Georgia, like Teolita who was never screened for cervical cancer, diagnosed at a later stage, and had a lower than five-year survival rate.
While we at Cervivor are hellbent on focusing on surviving cervical cancer and thriving, we must look at the barriers, challenges and be laser-focused on the points that make some of us uncomfortable. Yes, we’re talking about economic, historic, and structural or institutional racism.
Here’s the breakdown of how Black women are impacted, disenfranchised, and disproportionately impacted:
Healthcare affordability and access
Lack of comprehensive sexual health education
Historic mistreatment of people of color, particularly Black people, by the healthcare community
HRW women’s rights researcher Annerieke Daniel, said, “We really have to look at the result of racism and discrimination in the health care field and especially looking at gynecological care, which we know is rooted in abuse and exploitation of Black people, of Black women, of Black bodies.”
How can we make a meaningful difference?
Help increase screening rates. Increasing screening rates could greatly reduce deaths from cervical cancer among Black women, Hispanic women, and other underrepresented communities. This requires the delivery of interventions directly to underserved women such as screenings based at accessible locations closer to their places of residence – such as via mobile vans and/or screening locations at local community centers instead of medical clinics. This can substantially lower cervical cancer mortality rates through early detection.
Encourage clinical trial participation.A lack of racial and ethnic diversity in both cancer research and the healthcare workforce is one of the major factors contributing to cancer health disparities, according to the American Association of Cancer Research. Clinical trials lead to the development of new interventions and new drugs. They are used to make better clinical decisions, but there is often a significant underrepresentation in clinical trials by non-White races and ethnicities. With a focus on targeted therapies and precision medicine, representation in clinical trials is increasingly important so that research includes and reflects all groups. Where to start? Share links to www.clinicaltrials.gov – where clinical trials are listed and searchable by location, disease, medicine, etc.
Gladys knows all too well the struggle of health care challenges as a Black woman. Before she was diagnosed with stage one squamous cell carcinoma in 2013, she had to demand medical attention, she said.
“I went to have my annual physical exam and requested to have a Pap smear. The physician did not want to give me one, according to the guidelines, stating that I was not required to have a Pap smear,” said Gladys. “I insisted that I have one and reluctantly, he gave me one. A few days later, the physician called to tell me that I needed to see a gynecologist. My test came back abnormal. I made an appointment to see my gynecologist. He did an exam and told me I needed to see an oncologist. The oncologist said I had stage I cervical cancer.”
The advocacy and support required is the very reason Cervivor exists. It also exists to educate everyone – whether they are diagnosed or not, whether they know someone with cancer, or not, and no matter how they identify – about cervical cancer and its prevention.
Black women helping to change the course and legacy of cervical cancer
One of those lessons includes the impact of Henrietta Lacks whose cells were used in groundbreaking cancer research. Lacks, a Black woman, was 31 when she lost her battle with cervical cancer in 1951. Despite her passing, she posthumously helped advance cancer research. Her cells, referred to in the medical field after Lacks as “HeLa” cells were cultured from her tumors, survived and multiplied outside her body thus contributing to medical breakthroughs including the development of several treatments and vaccines, including the HPV vaccines. Despite the fact that doctors did not tell Lacks’ family that her cells were being cultured, the groundbreaking effort is a notable moment in Black history.
Chellesse Parker, was diagnosed at 29 and years later is thriving. One thing she made sure of during her own journey, was to ensure her daughter is armed against cervical cancer despite the challenges facing Black women.
“There are a lot of things I can’t protect her against but this is something that I can prevent,” she said.
Research tells us that when cervical cancer is detected and treated early enough, women have a 93 percent five-year survival rate. We like these numbers and must rid ourselves of the disparate stats harshly impacting Black women. Every woman deserves to be screened, to receive equitable treatment, and to know they have a fighting chance at being a Cervivor! Let’s fight collectively to protect, prevent and prevail!
Read more about Black women cervical cancer survivors who we honor, celebrate and appreciate. For more resources on cervical cancer, awareness, and representation connect with us on our social media platforms and Cervivor.org.
I wanted to take a moment to share my love letter to the caregivers in our lives, family or chosen, who perhaps unbeknownst to them, are the ones who give us the strength to put one foot in front of the other day after day.
Cervivor Erica’s husband JR, had talked with Cervivor here about his feelings of helplessness but through his unique caregiver lens you feel that special bond that forms when a family is faced with such a life alerting shift.
Love may conquer all but that doesn’t make it less challenging or painful for caregivers. I won’t pretend to know what it’s like for my caregiving team but my husband, my children, my parents, my brother and my village do more for me than they may ever know.
After my second surgery left me with no bladder or colon, my then fiancé became my nurse. In the hospital, he recorded the Wound Care nurse demonstrating bag changes. Then at home *he* was the one who changed my poop and pee bags for months. While I screamed in frustration trying to do it on my own, he just held me and reassured me that I could do it. And eventually I did.
He also sat beside me and held my hand each time my oncologist told us of a reoccurrence or metastasis. We’ve cried together, and apart. It is exhausting and overwhelming for both of us and that’s why I’m so grateful for him.
My children, who each moment provide me with love, are who I fight so hard for. My children may be adults but that does not make this any easier. This caregiving thing wasn’t suppose to happen until I became very old. I want nothing more than to continue to be here with them to share the big and small moments life brings.
My parents and my brother, along with my chosen family, constantly support me. They are there each time I am hospitalized, they take care of our pets when we cannot, they lend a shoulder to cry on, they summon prayer warriors in my name, they have raised an insane amount of awareness and dollars for causes I care about, they never miss an opportunity to celebrate with me and they love abundantly and without hesitation.
These people, whose love touches my heart so deeply, are MY HEROES. This life would not be worth fighting for if they were not here. You give selflessly; you are my joy, my peace and my strength.
Whomever you surround yourself with during the hard times, know that their love is unconditional but they struggle with watching someone they love suffer and they want more than anything to help get you to the other side of your pain. Keep the door open for those who feel like sunshine.
A beautiful quote that sums up caregiving to me is this one…
“When you go out into the world, watch for traffic, hold hands and stick together.”
I have cancer and treatment is taking my hair. Do I have to suffer? Absolutely not! Personally, in the first few months of my cancer treatment, I surely would have liked to suffer by myself and not burden anyone by experiencing me bald and sickly. We are humans and I believe we are living to experience human emotion through connection. The saddest and most down I have felt in the past year of having cancer was when I felt alone and absent of connection. So, suffering at the hand of hair loss, in my opinion is avoidable. To share how I avoided the deep hurt from losing my hair, connect with me and join in on the journey of near waist length blond locks to bare, bald, and beautiful.
Jodi with her long locks
I am a cosmetologist by trade, though I certainly prefer the title “Hair Artist.” I have been in the industry since 2010, but cut back to only styling friends and family after having the second of my two children. I entered the beauty industry to bring to surface my clients’ natural beauty, as well as highlight and enhance them. Hair has been my passion and always fascinated me from the way it grows to how we approach changing color and textures. I have had a handful of clients come to me after their chemo hair had grown out and I never thought that I would be experiencing what they had to endure. The strength they showed is completely magnified now that I am in the trenches that they had to wade through to get to that post grow out perm.
Donation for Wigs for Kids
It just so happened that I was near my hometown and with my entire family when I was told that the three month post radiation/chemo scan showed residual and new spots of cancer and the new chemo I was about to start would take my hair. I sectioned my hair into eight small sections (it would have been twelve, but I was rocking an undercut), had my mom and sisters braid them, and each member of my family was able to cut one. I was very excited so the sadness that occurred took my breath away a little further with each tear. I felt the hurt in each of my family members now that my diagnosis was a lot more real to them more than my own hurt. I did not plan for heavy emotions, but I also didn’t plan for cancer. I went to a friend’s salon where she sculpted the remaining hair into a spunky alternative pixie and gave me a kick-ass pastel pink color job. I mailed the braids off to Wigs for Kids on the way.
I stripped the color every week and replaced it with whatever I had in the color cache in my garage. From soft pink to day glow neon pink. I also took that time to document and demonstrate how devastating bad shampoo and hot showers were to fashion colors. Each color lost all of its shine within a shower or two, which made stripping them with direct dye removers very easy. After neon pink I had a pastel teal. Then I started chemo. I colored it again to deepen the teal to a truer variation to more accurately depict half of the colors for cervical cancer awareness. White was out of the question at this point.
A week after that first infusion, I started seeing teal hair shed off on various surfaces. I was able to pull small amounts out when I ran my hands through it, but I had a request from a special niece to get to purple. I was scared to drag color through all of it, so I added a splash of violet to my bangs. Being able to play with my color and have that to look forward to made it easy to let it go. Possibly because by the time it started coming out, I was getting sick of the work it took to change color or keep it up.
I was in my pickup on the way to spend a weekend with my mom on a trail ride when running my hands through my hair resulted in a handful of fallout. I had another four hours on the road and keeping my hands off it was torture. I pick and I pull as I fidget, so it was incredibly difficult. We had family pictures planned a week from then and I really hoped to have hair for them. At one point on our trail ride, a friend rode up and rubbed her hand over my hair as she complimented it. All I saw was a huge chunk of my hair flying away in the wind and I kept a hat on after that.
Jodi’s three year old showing his barber skills
When we got back from the ride, I decided it was time. I was tired of seeing my hair attach itself to everything but my head, and I didn’t think it would survive a much-needed washing before pictures. We headed to my sister’s house and she took photos while my husband and three year old took my brother’s terrible beard clippers to my head. It was a mess and a struggle and hilarious. I ended up pulling out the remaining strands and then going over it with his clippers. It was incredibly satisfying and this time, I didn’t feel sadness. I felt free. Our pictures turned out gorgeous and I am very happy to have done the chop before them.
That was five months ago, and I still catch myself wanting random cool hair trends I see on Instagram for an instant before I remember that one must first have hair. I do have two wigs that I was so graciously given by my infusion center’s recourse center. I rarely wear them because my head has always been so sensitive to pressure. I will endure them if an occasion calls for it, but honestly, I am much more comfortable bald. Wigs are not cheap, rightly so, as the time and talent it takes to create them is unfathomable. Some insurance does pick up the cost and there are many programs available to patients to be able to afford it.
There are more than a few options when it comes to picking out a wig. Synthetic wigs are a bit more affordable than human hair and have come leaps and bounds in appearance. Lace front and lace tops offer beautiful parts and hairlines. I prefer my lace top over the other any day, as it is much cooler and not nearly as heavy. The styles offered are infinite! I had a blast trying on some within my scope and at least one that was the furthest out of my style spectrum I could get. Curly, straight, long, short, any color under the sun, wigs are a blast! Now I don’t have to deal wi
