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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

A letter to my mother 20 years after she died from Cervical Cancer

Dear Mom,

I often think of you as my guardian angel and that you can see me. You can see me driving a car fast like you begged me not to do so many times. You see me laughing. You see me with my friends. You see me making a tough decision, and having to be assertive. And when you see me and my brothers, you smile. It’s your big wide, gapped tooth smile. You smile and you put your head down, like I do when I smile. Sometimes with the smile you shake your head. You approve of what you see. You are pleased with us.

Do you know that January is Cervical Cancer Awareness month? Sometimes I really wish that I didn’t know that.  I really wish that the day in 1992 when you told me that you had cervical cancer never happened. Your smile was not there. You were sitting in a chair in your bedroom and you told me that you had cervical cancer. When you said it, your eyes closed and you grabbed your hands together. At the time, to me it felt like you were confessing something. I was too young and naïve to understand that you were scared. You said that there was an 85% survival rate. Because I thought this was a confession, I was relaxed. I relaxed during the whole conversation. There was no way that you would die.  My young, naïve mind said death happened to other peoples’ moms, not my mom.  Besides, I thought to myself, there would be no point of your death. You were too much of a good person.

I remember in 1995 coming to see you in the hospital and I was still relaxed.  My grandma was not. She pulled me into the hospital hallway and said that you were not going to get any better. In that moment, my heart went from the 8th floor of that hospital to laying on the ground on the street below. You were not supposed to die.

But in 1996 you did die. And I was left with a myriad of questions about the thing that took you from us. I did not hear many people talking about cervical cancer. What was HPV? How come you were not part of that 85% that lived?

In 2006, ten years after your death, I met a woman who explained all of this to me. Her name was Tamika and she was on a journey. She was racing to beat the clock to eradicate Cervical Cancer. When I learned about her journey, I saw Tamika and Friends as an army with soldiers. You always taught me to fight. I picked up my weapon and joined ranks with these cervical cancer soldiers. I was never going to let another woman get cervical cancer.

I have learned so much since you have been gone mom. I have learned about Henrietta Lacks, the different strands of HPV that cause cervical cancer, and how it is incredibly important to go to the gynecologist. And I have learned that sometimes bad things happen to good people. It is sad to admit this mom but your death has taught me just as much as your life.

Mom, I am faced with the cold fact that this year, you will have been out of my life for the same amount of time that you were in it.  I hope that you see that the world has changed and that I have changed. You always taught me to help other women and I have been doing that. I once met a girl who was in a job training program. I was doing a group counseling session with her and other young women. We talked about ultimate life goals. The girl had been quiet for most of the group. When it was her turn to say what, she wanted most in the world, she replied, “I just want to make my mother proud.” I touched her hand and I said, “Me too.”

I cannot see you, but the thought that you are smiling at me motivates me on my darkest days. It makes me want to talk to people about cervical cancer, organize communities, be a better mental health provider and be a servant of the Lord.  I do not know if you can really see me, but I have realized that I see you every time I do an act of kindness.

Hugs and kisses.

Your only daughter,

Lilly