As you may or may not know, January is Cervical Cancer awareness month. Just like Pinktober, I appreciate the push for awareness and positivity for those who are battling or have battled this disease, but my jury has been out to lunch for a while if it actually HELPS the cause. I saw this bracelet on my Facebook timeline today. I couldn’t quite place my finger or brain on my conflicted thought process. I had wanted the bracelet the moment I saw it. But then, in sheer trepidation that I would be subjecting my dollars or integrity to something that I might look back with concern, I paused and then, closed the page. I came up to my bathtub, (where I strangely think best) and I started to type and feel.
Be Brave. Those words resonated with me more than any ribbon or short poem about cancer. Anyone facing a disease or illness wakes up each day to struggle through and I’m guessing most wouldn’t claim they were brave. Resilient, maybe. Angry. Confused. Frustrated. Hopeful. Brave? No. I wasn’t brave. I was terrified. Then, I was relieved. I don’t think the word, “brave” entered into my everyday existence until someone proclaimed, “You are Brave!” And I cried, because I felt like a terrible fraud. I wasn’t really, I was a million other words.
My birthday month has been taking over by pink. I carry the BCRA-2 gene mutation. And I haven’t yet used my “brave” to start tackling what I’ll do with that issue. My birth mother had ovarian and breast cancer. I had cervical cancer multiple times and ovarian cysts. Now, my breasts are rebelling as my body reminds me each morning that my ribbons seem to be turning into quite the collection. Perhaps this, isn’t why I own any. Up until this year, choosing only one cause, when I believed in the power of all of the causes, was daunting. How could I choose only ONE issue to define who I was and the change I wanted to make in the world? I thought choosing only one badge or ribbon, threw me into a box or label. (If you know me, I hate both concepts.)
Cancer patients, victims and survivors are all typecast with their disease. We become a whisper in a crowded room, “Did you hear, Kate had cancer?” I wanted to be the person I used to be, but I recognized after my 3rd round with HPV-positive cervical cancer, I needed to own the label and find a level of comfort with my disease, to continue speaking out and claiming a part of my heart that had remained empty. I was born into HPV and cervical cancer advocacy. I just didn’t know when I was young. But, I know now. If you can believe it, even in the cervical cancer community, some are having a very hard time advocating for cervical cancer that is HPV-related. Different groups are arguing about if all cervical cancer is HPV-related, or if only some are. I’ve chosen to identify my cancer as HPV-positive cervical cancer, simply because it doesn’t negate any cancers that weren’t HPV-related. (A post is forthcoming about HPV-distinction and the struggle to fund research so we can definitively state, “all cervical cancers are HPV-related,” or, “A majority of cancers are HPV-related.”)
My first television interview was in 2009. I was on Esme Murphy’s Saturday Morning show and discussed why pap smears and education were such important aspects of understanding and eliminating cervical cancer. I held an Eighties Prom, complete with bowling, raising more than $900 within 2 hours for the National Cervical Cancer Coalition. I started speaking nationally about the stigma and destruction that came with this disease. I watched two dear friends, pass silently, as their bodies slowly morphed into vessels for cancer, while never once giving up hope or their beautiful spirits. Almost 5 years later, I’m still struck at how this disease claimed a part of my passion and life that I never knew I had room for. And, which I could never imagine. The closest idea I could describe it to, was after I had my daughter, I never imagined I could love other idea, object or being as much as I love her. Then, my son came along. And now, I state that sometimes I feel I’ve exploded with love and purpose. HPV education, awareness and legislation has become a child to me.
This is the week. I’ve never thrown myself into anything, as I have the Bush Foundation Fellowship application process. For someone that lives so unabashedly out-loud, this has been emotionally-rewarding beyond measure. I’ll find out by the 22nd, if my idea is selected to present to the panel. I typed in a fury of excitement and purpose, not so sparingly using my backspace key, to find the right words to describe the impact I wanted to continue in our region. As the former Midwest Chapter Leader for the National Cervical Cancer Coalition, I know all too well, the world and dedication that comes with helping our world understand why HPV matters. My Fellowship is the only opportunity I have to create a steering committee of differently-minded individuals from cervical cancer, HPV and medical charities around the United States who are willing to help further HPV education in our region, while staying committed to keeping open dialog and allowing for each member to be heard and respected. Taking leadership of a steering committee that will focus on bringing better educational materials to ALL organizations from State, schools, non-profit and National government is no small task. I’ve detailed out 4 focused goals to my Fellowship selection committee that when completed, will equip free education, training to properly spread a message of HPV awareness and prevention, while taking away the stigma of those living HPV-positive lives. My statement was simple: As an individual living with HPV and a cancer survivor, I am focused and driven to bring Minnesota, North Dakota and South Dakota’s health system together to better educate and eradicate HPV. That’s my, “brave,” but more so, that’s my commitment.
When I entered into my cancer battle, I felt a mix of sheer anger and hope. My body had allowed HPV to reproduce on itself, and hadn’t completed the significant task of eradicating disease; I felt betrayal and disgust. My HPV led to cervical cancer rather aggressively, (coming back over 5 times in 4 years. 3 were cancer.) How had my body become skilled at doing the very thing it was programmed not to do? I spent many nights angry, reading everything I could or traveling to speak to doctors and advocates. I learned that almost every HPV-positive individual faced the same trauma: Why had we failed? In that failure, is where I found my hope. Eradicating the disease, is a lofty goal. It’s my BHAG. It’s my trip to the moon, or winning the lottery. Eradicating the stigma around HPV and educating everyone I meet, is my tangible focus. It’s a much more manageable focus. I found inspiration in realizing that even the biggest ideas, could start with small steps.
This bracelet struck a chord with me because I didn’t and don’t feel, brave. I feel committed. I’m not ready to mark myself with, “brave,” because there are many moments when I feel the exact opposite. I feel lost. Worried. Confused. And, hopeful. There isn’t one single word that can describe my struggle, except committed. In 5 years, that’s been my only constant. I’m committed to showing my children that I’m not defined by a virus, or disease. I’m committed to becoming and maintaining that I am a human of value and substance. I am committed to recognizing that we are not there yet on most diseases, but we need radical thinkers to create waves of purposeful growth and knowledge. I’m committed to never ever, giving up.
I’ve wished and hoped for many things in my life. How lucky I’ve been at the few that have worked out as I’ve wanted them to. I don’t believe my cervical cancer or HPV-positive status has been a gift. (I’m not ready to proclaim that yet.) It’s yet another reason for purpose and being my best. I place my struggle up there with my love for my children and want to create happiness and love for them each day. I know in the future, my purpose will become a gift, if I stay committed, even if my path winds and becomes unrecognizable from where it first began.
So, do me a favor. Don’t call me brave. Ask me how you can help me commit to focusing on a small piece of HPV awareness or education, everyday. You’re part of my path, even without realizing it.