cervivor school

An Advocacy Spark

From A Tiny Spark May Burst A Flame – Dante Alighieri

A few months ago I started planning for what would be my “coming out” party so to speak.  Kind of like a debutante coming out to society, I wanted the world to know that I had cervical cancer caused by HPV.  Wow that felt so good to type.  The event was planned for January during Cervical Cancer Awareness Month and the idea was simple, have a few close family and friends over to hear my story, watch the movie Someone You Love: The HPV Epidemic and answer any questions.  I had no idea how much of impact this event would have.
So let me rewind a little bit and tell you what brought me here and my “why”.  In 2009, I heard those three awful words, “you have cancer”.  I had cervical cancer and it was a result of HPV 16 and 18.  What is that you ask? HPV is the human papillomavirus and there are more than 100 types of HPV and just a little more than a handful are high risk or cancer-causing.  HPV 16 and 18 cause about 70% of cervical cancers.
When I was first told I had cervical cancer I had no idea what that meant.  I had no idea what HPV was.  More importantly, I didn’t know anyone who had or was going through what I was.  It was extremely lonely.  Not only could I not relate to others, I had family members who associated HPV with a stigma and told me things like it was because everyone sleeps around.  That hurt beyond imagination.  I was silent about HPV.  Someone I looked up to made me feel like I did something wrong.  But I didn’t, they were just ignorant.  At the time I did what I do best, I went to the bookstore to find anything that may help me.  8 years later, 1 LEEP, 2 cone biopsies, an infection that almost killed me, 11 lymph nodes removed, and a hysterectomy I have finally found my voice to tell my story, I discovered “my why”.  I have finally found the courage to talk about HPV.
That brings me to my event, my “coming out” so to speak.  There were about 15 people in total that included family, friends, and neighbors.  Most everyone there had children ranging from around age 7 to their early 20s.  To make the evening more special I was honored to have Tamika Felder, the founder of Cervivor there by my side; and I was honored to have Kelly there representing Team Jillian.  Jillian is a Cervivor sister we lost this past September and I love that her close friends and family honor her by continuing to talk about cervical cancer and the HPV vaccine.

I could not have asked for a better evening, we even had a teal cocktail made by the very awesome Justin who was sporting a teal shirt.  Before the start of the movie, I gathered everyone
around to make a few comments and tell my story.  It was the first time I did this to a group.  I was so nervous, but once I started talking it was so easy.   I believe it was said in Cervivor School, no one knows your story better than you.   My best hope for the evening was that I would tell my story and we would watch the movie.  My goal was getting me over the nerves hurdle with people I knew.  But wow my goal was exceeded.  At the end there were questions.  There was interest.  There were women who were ready to go back to the doctor.   Moms who wanted to share the information with other moms in our community, people who were happy their kids had the vaccine, but they didn’t understand at the time how important.  Knowing that I was able to reach someone with my story, for me this was most definitely a tiny spark that had lit a mighty flame.
January is Cervical Cancer Awareness Month – there is still time.  Are you ready to have your “coming out” and share your story?  Cervivor is a great place to share your story and it has an easy to follow format which can guide you.
— Cervivor Amassador Tina Vetreno
Read more about her story here: https://cervivor.org/stories/tina-2/

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: https://cervivor.org/stories/jessica/