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/

Cervivor School Louisville Changed My Life

Diagnosed with cervical cancer in 2014, at the age of 33, I went through a wide array of struggles, both physical and mental. I underwent a hysterectomy, five rounds of chemotherapy, and 28 rounds of external radiation. It was by far the hardest thing I’ve ever endured. I felt like I’d lost so much of myself and was so frail, no matter how much support surrounded me. Cervical cancer took my fertility, threw me into menopause, and caused anxiety issues and fears that I still deal with to this day.

Amanda Arm At Cervivor School LouisvilleI learned about Cervivor while undergoing treatment. I started following the organization on Facebook and reading information on their website. But it wasn’t until this year that I felt like I was truly ready to be part of what they represented. I watched as they hosted various Cervivor Schools, hoping that eventually, one would be in my home state of New Jersey so I could attend. But when they put out an announcement saying they’d be awarding a few scholarships to Cervivor School Louisville, I jumped on the possible opportunity and sent in my story immediately. When I found out I was chosen I almost started to cry, this was a new journey I was being led toward.

When I landed in Louisville I ran into my roommate while getting off the plane (we were on the same plane and didn’t even know it). We’d never met, but we connected so quickly because there was so much we could relate to. That’s how it felt the moment I met each one of the amazing women who attended the Amanda and new Cervivor Friendsweekend event. Throughout the weekend we spent time together both during and outside of our “classroom” time. (My favorite highlights on our downtime included spending time with some of my newfound friends having dinner at the Hard Rock Café, drinks at Howl at the Moon, and taking a stroll back and forth on the walking bridge across the Ohio River.) Through Cervivor School we took a step together to move past what we had dealt with and learn how we could help others.

One of the hardest things I faced with my own cancer diagnosis was knowing I got it because of a virus. There’s always been this stigma surrounding HPV because it’s known to be a sexually transmitted virus. But what people don’t understand is that the virus is not only transferred through sexual intercourse, it’s transferred through skin to skin contact. HPV doesn’t care if you haven’t had intercourse, it doesn’t care if you’ve used condoms or stayed a virgin until you were in your 20s. This is why it is presumed that approximately 80% of women have some form of HPV, and many of them don’t even know it. And today, after much advancement, there’s even a vaccine to help prevent against the virus.

Cervivor School offered me knowledge I need to help others. I didn’t want my story to end with me moving past my cancer, because it will always be a part of me in some way. I wanted my journey to give me the strength to help other women understand HPV and understand how they can prevent having to go through what I did.

You see, in my case, I had known I had HPV since 2009 when a test came back positive for the virus. My HPV went dormant for a few years and then came back. In 2013 I started having symptoms and knew something wasn’t quite right so I went to my doctor. She told me she felt I was going through hormonal changes, but ran some tests just in case. It wasn’t until I returned to see her in 2014, my symptoms worsening, that I found out she hadn’t done a Pap during my previous visit because I’d had two years of clear Pap tests before that. She did other tests to check for infections, but not a Pap. With all the swabs she took I only assumed she had done one. This time, when she did an internal exam, it couldn’t have been clearer that something was severely wrong. By the following week the results were in that I had cervical cancer. If the proper tests had been done earlier, my story could have been completely different.

Cervivor School gave me the tools and helped raise my voice so I could be Amanda raising up the Cervivor Signempowered enough to tell my story. To help me inform others that they don’t have to go through an HPV-related cancer. To be their own best advocates by going to their annual well-woman visits and making sure to get the tests they need. And to listen to their bodies, because each of us knows our body better than anyone else ever will.

At the end of Cervivor School Louisville, I left with knowledge, courage and strength. I’ve gained friendships that will forever flourish as we grow and move past cancer and toward advocacy. I never thought that such a heart wrenching and terrifying period of my life could bring about something so amazing.

Today, I’m already working towards being the advocate I am choosing to be. I’m planning a Cervivor Meet-Up in my area to happen this October and hoping to eventually work to bring about Cervivor School New Jersey. I’m constantly reminding women I know through social media about getting their well woman visits as well as offering information on HPV-related cancers and the HPV vaccine. I feel like if I can inform just one woman by sharing my story and remind her how important it is to see her doctor, that’s one less woman who may have to hear the words, “You have cancer.”

Amanda Tanay resides in New Jersey with her loving and supportive family. She works as a Copy Editor and Social Media Coordinator for the Monmouth County Park System and is an aspiring writer. 

Our next Cervivor School: Marion, Iowa https://www.eventbrite.com/e/cervivor-school-iowa-tickets-26834926989