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Cancer Broke My Cup

Sometimes I still can’t believe that I even have had cervical cancer, much less still dealing with the fallout from it-complications from surgery, side effects of radiation. I intellectually know that it happened, but there are moments where I look at myself and my life and go, “Wait…what?” Sometimes I actually look at and feel my radiation tattoos before getting in the shower. Yeah, I know that is weird, but there are times I need to connect with it — I need to stare at my markings, touch my port, my scars- to physically say, okay this happened and to remember just how far I have come. To have a slight even if for 20 seconds-mini celebration that I am here-that I have endured.

See, I believe we all have a choice when it comes to how we are going to look at our cancer, much how we all have choices in how we view anything in life. Are we going to be the cup half full girl? OR are we going to be the cup half empty girl? Before cancer-the answer was easy for me. I definitely was a silver linings person, taking lemons and making lemonade. I have had laugh lines since I was 10 and have always been able to find something to smile about. But enter a cancer diagnosis..enter in chemotherapy and radiation…enter in internal radiation…enter in infertility…enter in surgery…enter in (fill in the blank).Suddenly, being the cup half full chick was not as easy. I had faced some really tough things before, but never was my life on the line. Never had I been told, “You can either do treatment or live for about 3 more years.” Of course, I had thought about life after death, but NEVER had I really truly sat with it as a possibility. And what would treatment look like for me? Could I even do it? I remember sitting there with my oncologist when she was explaining to me where the cancer was, giving me my stage. She started explaining the action plan and what was going to happen to my body. Time stood still as I looked at her mouth moving. Nothing was really the same after.

Now back to that choice. I had to consciously ask myself, “How are you going to approach this?” I was scared of all of the unknowns. I had never even been in the hospital! Was I going to STILL be the cup half full girl? I remember coming home alone that day and crying one of those big cries — where you just lay and cry, and cry, and cry. The kind of cry where you get up and look at yourself in the mirror and your face is puffy and you have a sinus headache. That’s where I was. Half full? I was afraid and devastated. How could I even be a half full girl? I felt like someone had just taken my cup and shattered it on the floor. My cup was broken. Dreams were stolen. I was afraid. Cancer had come in my life like a thief.

Yet. I still had this choice to make. Cancer had broken my cup, but I was still here. Life would never ever be the same, but there was a plan forward. It was a hopeful plan-not without risks and not without pain and loss, but there was a plan.

There is a Japanese art form, in pottery called “kintsugi.” It is a process that embraces damage-where the broken vessels are not discarded, but where broken pieces are mended. The artist takes the ceramic pieces and mends them with a lacquer dust of gold, silver, or platinum. The flaws of the piece are actually highlighted and not hidden at all, often resulting in a piece that is far more beautiful than the original plan. The art form ties in the Japanese philosophy of “wabi-sabi” that embraces the flawed and imperfect, that actually emphasizes rather than hides the broken pieces.

So as I looked at the pieces of my broken cup-this vessel I had plans for, this vessel that was not operating on the original plan; I chose to start picking up the pieces. The cup does not look anything like it did before, but just like in wabi-sabi, the more I embrace instead of hide, the more beautiful it becomes. I have to constantly remind myself of these truths. Oh how I wish, it could be where I just pick it up mend it and move on. For those of us who have faced cancer-we know that it’
truly never “over.” I feel like mending my cup is a daily choice. I find myself even now, while being declared “cancer free” in October, still very much dealing with complications from a life-saving surgery-complications that will more than likely be part of my life in some way from now on. In addition to the reality of “scan-life” and other life altering side effects from treatment. So the question constantly remains for me, for us: Your cup may be broken like mine-will you leave it shattered or will you begin to piece it back together with gold and platinum, turning your brokenness into purpose and beauty? The choice is yours.

We need to talk. We need to have conversations about cervical cancer and prevention. Let my simple t-shirt design, help you begin that conversation AND help me pay both past and current medical expenses related to cervical cancer.

 Unfortunately, I am in need of another surgery due to post radiation side effects, from a life-saving hysterectomy. This surgery will repair significant damage that has been done to my bladder and will require a 6-8 week recovery. Just as with the past leaves I have I had to take, I will not be getting paid during this period. Donations through my t-shirt campaign can significantly help with expenses and you’ll look super cool! There are hoodies and t-shirts for guys and girls! https://www.bonfire.com/start-the-conversation/

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