Tuesday, June 4, 2019

What Makes a Cancer Survivor, Anyway?

They say you become a cancer survivor from the moment you are diagnosed, for as long as you are alive. If that's the case, later this summer will mark 8 years since I became a breast cancer survivor. Eight years and I still grapple with the term survivor, like I should be on a deserted island competing for a million dollars. Although I guess there are parallels between the long-running reality t.v. show and cancer, like facing unfamiliar challenges that have the potential to kill you. Learning to navigate one's way from an infusion chair to the bathroom while connected by three different tubes to a chemo pole is not the same as learning to fish for your dinner with a spear, though. I don't think.

I posted this to Instagram...

View this post on Instagram

I never asked “Why me?” when I was diagnosed with cancer. I knew it was too random for there to be any explanation from the universe that made more sense than that. But every day since I stopped being a terminal patient and moved to the realm of people who can look at cancer in the rear view mirror, I have wondered why. Why did I survive? . . . I’m not sure I’ll ever know the full answer to that, but as one of my favorite survivors said this morning, “I want to help other cancer patients know what the other side can look like.” That, and I want others to know what questions they might ask to avoid a story quite like mine. . . . For me, surviving cancer means falling in love with myself again. It means forgiving my imperfections because they are my story. It means the possibility another life unfolding before me, my toddler chasing our dog down the hallway and around the coffee table while squealing with glee, fearless. She is teaching me to be brave again. It means I get to imagine a future. This is what it could be like. #nationalcancersurvivorsday #breastcancer #bcsm #cancersurvivor
A post shared by Jen Campisano (@jencampisano) on

Lots of patients instead mark survivorship from the day they finish treatments. By that definition, I've been surviving cancer for just over 3 years. But that definition doesn't sit well with me, as it leaves out too many who never get to finish treatment. For five years, I thought I would be one of those patients who died with my disease. Was I not surviving then? In some ways, it felt like I was hyper-alive -- surviving in a vivid, punchy, super-saturated way -- during that period. As my friend Emily wrote about living with metastatic breast cancer a few days ago:

I feel like I have been moving at such a frenetic pace lately because I am continually reminded that my timeline has been drastically shortened. How do you fit an entire career, and an entire lifetime, into the space of “months to years”? You can’t. And you don’t. No matter how hard you try.

But oh how we try. Nothing like coming face-to-face with your mortality -- and a generous dose of treatment-based steroids, too -- to shock your system and routines into high gear for a bit.

And plenty of patients, mostly those I know in the metastatic community, but not exclusively, shun the term 'survivor' altogether. For them, it feels wrong to leave out those who didn't make it. The word feels too exclusive and divisive -- and celebratory, even, in the face of what is often a cruel and devastating disease. I totally respect that line of thinking.

On the other hand, I also think this life is worth celebrating, even in the midst of a terrifying shit-storm. As my late friend Lisa Bonchek Adams said so wonderfully when she was facing the end of her life:

Find a bit of beauty in the world. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.” 

My bit of beauty in this world
Sunday was National Cancer Survivors Day. I read through dozens of posts from friends and patients. I watched most closely the posts and reactions from those I know living with mets. I always wonder how they would feel about my celebrating this life, and I worry. But something I heard recently, from BrenĂ© Brown because I'm on a kick, touched on the fact that our experiencing joy gives room for others to grieve and acknowledge that their pain is significant. That other people's pain matters because this life is so worthy of celebrating. I am paraphrasing greatly, so I hope I'm doing her words justice.

How do you define survivorship? Does the word ring true for you, or do you turn away from it and find it divisive? Why or why not?

No comments:

Post a Comment