If I could turn back time and alter the roll of the genetic dice that gave me the BRCA1 mutation -- never experience agonies of fear waiting for biopsy results, not face the wrenching decision to give up my breasts and ovaries, endure 22 hours of surgeries, months of recovery and 60 inches of scars -- Would I do it?
It seems like the answer would be simple, but it isn't.
I remember the shock of learning I carried a genetic mutation that saddled me with an 87% chance of breast cancer and a 55% chance of ovarian cancer. At the time, my mother was dying of BRCA-related cancer. I watched her fade as my father's grief grew day by day. I would undo her history in a hot minute, if I could.
But my story is different. Thanks to luck and genetic testing, I am a "previvor" -- slipping into a tiny slice in time between learning my genetic destiny and living it. I got to change my future. If that's not a mutant superpower, what is?
Like any mutant superpower, it came with hard trials. I elected to have a prophylactic hysterectomy and double mastectomy. It's hard to be faced with a dire diagnosis, as my mother was. But it's also hard to place your bets on odds instead of sure knowledge. My healthy body was an innocent bystander, as far as I knew, and I was voluntarily walking into the line of fire.
Surgery and pain were not what I feared the most, though. What really kept me up at night was fear of losing "myself" -- of not knowing who I'd be when this gene was done with me. Would I be a stranger, disconnected from who I'd been? I knew it was ridiculous. I'd been a child, a teen, an adult. All those identities were more unlike each other than I would be post-surgery and I never once lost the thread of myself before. But still I wept rivers of tears mourning the woman I was giving up.
My last surgery was over a year ago and the pathologies all came back clear. I beat that beast! I'll never know if I would have faced the beast for sure, but the odds were pretty stark. I'm at peace with my choices.
But now, I've been asked this question: Would I undo it if I could?
I am a performing artist and writer by profession, but I resisted writing about this experience -- I didn't want to be "Mastectomy Girl" and have my public identity defined by mere physical chance. But about three months after my last surgery, I was inspired to write a comic song called "Ta Ta, Tatas." I had no idea when, where or even if I would ever perform it at the time.
However, it turned out to be a trickle that swiftly grew into a flood. Within weeks, despite my reluctance, an entire show poured out, an hour of monologue with nine songs that were funny, sad, angry and wry by turns. A devastating experience became something positive, something that could make a difference, help others facing their own tough journeys, something I loved. It became "The Mutant Diaries: Unzipping My Genes" -- A one-woman musical about telling cancer to take a hike. <http://MutantDiaries.com>
The very first performance was at my mother's bedside in hospice just a few days before she lost the battle I was spared, one year ago this month. I'm so grateful she got to hear it. Since then, I have performed it on stages from Seattle to London and am humbled to meet women who thank me for giving voice to their feelings.
I guess I did become Mastectomy Girl after all, but I like her. I'm not the me I would have been without the BRCA1 mutation, but my thread of self remains strong and unbroken. She's just taken one fork in the road. I'm sure there would have been good things on that other fork too. I'll never know. But this experience has given me gifts I treasure and I can't wait to see where it leads.
Would I change the past? Would you?
This article originally appeared as a guest post on Teppi Jacobsen's "When You Put It That Way" blog on ChicagNow.com
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