Today is National Previvor Day.
What is a previor, you ask? It’s someone like me, someone who hasn’t yet had cancer but who is so highly predisposed that it’s more likely than not. It’s someone who is taking steps to minimize the risk of cancer, someone who is taking her health into her own hands. Being proactive. Not surviving, but previving.
A lot of people don’t appreciate the word; they think those of us who haven’t battled a disease shouldn’t claim to have survived anything, that it’s “our choice” to undergo months of surgeries and risks and emotional turmoil. I can understand their opposition to the word itself, but I cannot agree with their opposition to previvors in general.
But today is National Previvor Day, because no matter what word we use, there are people out there with genetic mutations, about which they have no idea. I was lucky – I feel as though I’ve had BRCA in my life forever, so I’d had time to do the research and know my options before I even tested. And even then, it was a huge blow to learn I was BRCA2 positive (I’m sure we all remember that tearful month and a half after my results came in). Now there’s a nationally-recognized day. There’s an entire week dedicated to hereditary breast and ovarian cancers (yes, this week, the one that ends with under-recognized Ovarian Cancer Awareness Month and moves into pink-overloaded Breast Cancer Awareness month). There’s even a freaking iPhone app.
Now, there will be a lot more people getting angry over the word “previvor.” There will be more attention on us, more people saying “Why would you have a surgery like that? Why not just stress less and eat organic, maybe drink more tea?” There will be more confusion, more judgment, more malicious comments online. And there will be many, many more opportunities to educate people about these genetic dispositions. For all of the ignorance that might be spread, there will be more people hearing “previvor” and looking it up, taking the quiz on their iPhone and realizing this might apply to me. And if it does? Their path won’t be easy, but the more knowledge we have, the more open we are, and the more public we get with what we know about BRCA, the easier it’s going to be in the future.
I don’t use the word previvor for myself. I made the decision awhile back that I refuse to be labeled by BRCA, and it is why I’ve struggled with any form of activism or “coming out” (my coworkers, who are like my second family, are largely unaware even though we spend 40+ hours together every week). It’s a part of my life, not my whole existence. To me, previving means living the life I would have had if cancer could never touch me. I means doing everything I can to avoid cancer – surveillance for now, surgery in a few years, gathering all the knowledge I can. It means being strong and happy and loving life, learning to love my body whether my breasts are real or fake, loving my future children whether they come into my life before or after the removal of my healthy ovaries. I previve by not letting cancer win. I previve by being me, BRCA or no BRCA, and doing what it takes to remain healthy.
This year, during Hereditary Breast and Ovarian Cancer Awareness Week, a few days before National Previvor Day, I signed up to volunteer with Bright Pink as a peer support mentor (PinkPal). My PinkPal, quite frankly, changed my life (partially just because we’re both kickass and she’s my Long Lost Soulmate Bestie™), and I’m thrilled at the opportunity to be there for someone else who is reeling from the beginnings of their BRCA journey. I’m happy to be on my way to making a difference for others struggling with these mutations; tomorrow is my official six-month BRCA-versary and I’m able to see why we are lucky to have the knowledge we do, and why we’re lucky to take the steps we are, no matter how challenging it may be.
Today is National Previvor Day – think of all the lives we are saving.
[For anyone still curious, this post by Sue Friedman of FORCE sums everything up quite well.]