Being a full-fledged Cervivor

I pulled into the parking lot of the Cancer Support Center in Indianapolis one icy January morning, with butterflies in my stomach. My social anxiety was on full-blown high alert as I sat in the car, staring at the building where other cervical cancer survivors were gathering for a Cervivor School event. I took deep breaths. I counted. I wished it wasn’t too early for a stiff drink. But I gathered my courage and walked in. And I haven’t looked back since.

After my whirlwind bout with cervical cancer in 2014, life went back to normal… for everyone else. I tried to find that normal that everyone else so easily slipped back into, but it eluded me. I pushed cancer, and the baggage that came with it, to the back of my mind. I left the online cancer groups that supported me during my diagnosis. I let my cancer blog grow cold and stopped giving updates. I tried to ignore the fears of recurrence that lurked beneath the surface. I tried to hide my tears as I lie awake at night, thinking of the children I so desperately wanted but could no longer carry. I smiled and stayed busy, searching for a normal that doesn’t exist after a cancer diagnosis.

Then one day, with my 2-year cancerversary quickly approaching, I received a Facebook message from Erica, a fellow cervical cancer survivor. She friended me and invited me to an upcoming Cervivor School in Indianapolis. I was hesitant, but intrigued by the thought of meeting other survivors face to face. I decided to give it a try, reassuring myself that Indianapolis was only a few hours from home and I could easily leave if I felt uncomfortable there.

That first Cervivor School I attended was a small, intimate gathering of cervical cancer survivors and caregivers. The other women shared their stories and, for the first time, I shared pieces of mine. Until that day, I hadn’t thought much about my cancer story and how it is intrinsically woven into the fabric of my life. I had spent so much time trying to ignore it, that I was overwhelmed with relief when I was able to finally talk about my experiences. I saw my story reflected in the eyes of the other women who had walked the same path as I. We laughed. We cried. We learned about the medical side of cervical cancer and HPV, and about effective advocacy. I asked questions, and got answers. I let my guard down, and found a sisterhood that filled a hole in my heart I didn’t even know existed. For the first time, I didn’t feel quite so alone. 

I went on to attend another Cervivor School in Charleston, SC and helped plan and attended one in Louisville, KY. I’m so grateful to have had these opportunities and look forward to attending the next school in Florida in June. I learn new things at every Cervivor School and enjoy spending time with other women who truly “get it”. It has not only helped me learn the skills and strategies I need to be an effective advocate for the eradication of cervical cancer, it has also helped me heal. I recognize the personal growth I’ve experienced over the past year and a half, from struggling to accept my identity as a cancer survivor to being a full-fledged Cervivor.

Read Jessica’s Cervivor story here: http://cervivor.org/stories/jessica/

A Cervivor’s wish list…

I wish we had better treatment for cervical and vaginal cancer. Treatments have improved over the years, but not drastically, and

they usually have really severe and sometimes life long side effects. Thankfully my treatment worked, but for many of my friends modern medicine is doing well to just keep the cancer from growing. For an amazingly open & gripping discussion about living with cancer, read my friend Erica’s story. That said we’re seeing small improvements almost daily. As a Cervivor School attendee I was fortunate to attend an inspiring presentation on the targeted immunotherapies currently in development at Advaxis. In fact, just the other day, researchers from the University of South Carolina identified a subtype of cervical cancer that responds differently to treatment. We’re not yet at a cure, but all of the dedicated researchers, scientists, and doctors working on these treatments renew my faith that one day we’ll have one.
I wish that when I told people about HPV and cancer they said “oh, I already know that.” Instead, I usually get head tilt and either eyes look down and they change the subject, or on a good day, they say, “what’s that?” When that happens, my brain has a little confetti party because then I get to talk about HPV, how it’s related to cancer, and how it’s prevented. Which leads me to my next wish….

I wish that people would stop listening to fake news about the vaccines causing all kinds of trouble. It’s not a giant pharma conspiracy. Vaccines have been safely given to hundreds of thousands of women and men around the world. The numbers don’t lie, but they can be complicated and difficult to understand. Yes, it’s your decision whether you want your kids to be vaccinated, but this is an important decision and should be based on sound science & evidence. I hope that you’ll ask me when you’re unsure or worried. I’m a little obsessed with HPV prevention, which means that I stay current on HPV research and treatment. If I don’t have an answer I can promise you that I’ll get one quickly. This is one of my favorite websites for HPV vaccine information and safety because the writer posts current, peer-reviewed, science-based information and research, but also explains it so we can more easily understand it.

I wish that my cancer was trendy. I do. I wish that I saw NFL players wearing teal & white on their uniforms. I wish we could illustrate the symptoms of cervical and vaginal cancer with lemons. But I’m afraid there are no cute lemons or hearts to share symptoms of my cancer. Vaginal bleeding, weird discharge, change in urination, and painful sex are NOT cute. While we may not have lemons, we DO have some really cool princesses. Last year they were getting their preventive care and this year they’re showing the impact of ACA repeal.

I wish that the local media would respond to my calls and emails to bring attention to cervical cancer this month. I’ve sent dozens of emails & made several phone calls to ask for media attention to our cause, with no responses. I keep telling myself that one day the folks at Susan G. Komen were on the ground begging for attention to their cause, too. Thankfully I’m not alone in these efforts and have a whole family of women and men working to bring attention to cervical cancer and HPV education. Slowly but surely my Cervivor family is making strides.

I wish that my scars were visible. My small radiation markers and a small incision scar on my abdomen are the only evidence that my poor body was overhauled, abused, burned, and poisoned. I never even lost my hair. Many of my Cervivor sisters have the same scars I do, but you would never know it to look at us. Our scars are emotional & invisible. We’ve lost the ability to have children. We’ve lost the ability to have crazy, raucous, carefree sex with our partners. We’ve lost the safety of knowing we have control over our health. We’ve lost relationships with family and friends, and so much more. Sometimes I wish there was an obvious scar for all that loss. I love a good scar, it’s evidence of struggle. It serves as a marker that IT happened. Whatever your struggle, a visible marker for others that you struggled and that your experience was REAL. I wish sometimes that I had some sort of visible way to show you the struggle that I’ve been through, what my family has been through, and what too many of my Cervivor sisters live through every day.

I wish there was no shame with HPV or cervical and vaginal cancer. When I had my first abnormal pap and learned I was HPV positive, I was so embarrassed and instantly ashamed. I’ve seen the misinformed posts online about how HPV is related to sexual promiscuity. Even the risk factors shared by medical providers reinforces this notion that only women with many sexual partners have HPV. While we know HPV is really widespread and very easily transmitted through simple skin to skin contact, the stigma remains. The shame prevented me from sharing my experience and reaching out for many years, but it didn’t prevent me from looking online and doing my own research. That’s how I found Cervivor, which was a life changer for me. I found a sisterhood of other women who were going through the same thing. That sisterhood emboldened me to share my own story in hopes that someone might see something in my experience to identify with and might help her feel less alone. Only through normalizing our experiences, sharing my story and my sisters’ stories can we hope to reduce this stigma for others.

I wish my friends understood why I am so passionate about advocacy and share lots of HPV and cancer information online. It’s pretty simple, really – I wish I knew what I know now. I wish I could have had the HPV vaccine. But I didn’t. And now I have a virus that will never go away and caused my vagina to try & kill me. I have a roughly 54% chance of living five years out from my diagnosis, so it’s quite possible that my vagina will try and kill me again. I certainly hope that it doesn’t, and I’m going strong at almost two years cancer free. I don’t want you and your children to go through what I’ve been through. If I can prevent even one person from experiencing the terror of a cancer diagnosis, or the shame in an HPV diagnosis, I will consider my advocacy a success.

Sarah is a 2-year vaginal cancer Cervivor and Cervivor Ambassador. When she’s not advocating for HPV, cervical, & vaginal cancer awareness she can be found having adventures with her supportive husband, shuttling their 3 kids, & teaching undergraduates about interpersonal dynamics at High Point University in NC. Read Sarah’s Cervivor Story here