I have one year of hair. It’s my Hair-iversary. Since my shorn-like-Sinead debut last June, all wigs and hats have been stuffed unceremoniously into boxes and bags, cluttering the dark closet corners where I keep other things I’m too sentimental to toss: the original draft of my PhD dissertation, my prom dress, the typing trophy, and squeezy skinny jeans. Last year I must have written a dozen times how excited I was to burn and banish Tatum (wigs have names: mine was a Tri Delt), but one year later, she’s still on the shelf with other fears I’m too superstitious to toss.
Those of you that read the informative, well balanced, and (let’s face it) bleak essay by Peggy Orenstein learned that we “survivors” (blech) never really get away from fear and superstition. For us, there is no such thing as remission, much less a Cure, no matter how many people run and walk and row and shop and throw money at it. And now with the Pinking of America, none of us is spared from these ubiquitous, bubblegum-hued reminders to remain vigilant. With the best intentions, Komen has made breast cancer the sex offender in the neighborhood: as long as we’re aware (and incessantly imaging and chipping away at our breasts), we will be safe.
But that’s not true. Not at all.
Instead, this crazed awareness browbeats healthy women into an anxiety-riddled, breast-smashing exam as a 40th birthday rite of passage. And it’s quite possible that the only significant result of all of this awareness is earlier detection of cancers. But because this disease is still killing us with the same, disturbing frequency, it’s quite possible that much of that early detection wasn’t entirely necessary. Instead, it just means that girls like me get to live with this Survivorship status for an extra decade. But you won’t find disgruntled grumblings from this set of hairless amputees. Nope, we’d do it all over again. And then blog about how freaking lucky we are to be alive to clean the house with a pink vacuum.
I’m quite interested in any data that suggests I completely over-reacted to my breast cancer. Maybe my little cluster of rogue cells had already been there for a decade, and like her homebody host, never had any interest in travel. But maybe an evil, cellular dictator crossed the basement membrane in the six months between my 40th birthday and actual appointment for my slightly tardy (life-saving?) mammogram. Right now, scientists have no crystal ball to discern which breast cancers linger around like an unemployed college graduate and which ones are plotting for total body domination. And since they don’t know, girls like me mix superstition and treatment like cocktails, and then toast each other that we did everything we could.
It might be going a tad too far to call the removal of my non-cancerous breast “superstition.” However, as a scientist, I knew that drastic surgery wouldn’t change any statistics related to my survival. My breast surgeon and oncologist urged me (as they should) not to conflate cancer treatment with prevention, but reading Ms. Orenstein’s story—and knowing scores of others—I wonder if there is any kindness in extending the anxiety of yearly mammograms (for decades!) to save a breast? If there is NO CURE, no widely applicable tests to predict recurrence, and the only tools we have are imaging and butchery… shouldn’t we attempt to limit body-deforming procedures and radiation?
When her cancer recurred, and Ms. Orenstein considered a bilateral mastectomy, her doctor argued that an “average woman” wouldn’t cut off her breast to prevent an unlikely cancer. And yet, the “average woman” might not need four Ativan to get through a yearly, breast-flattening reminder of a disease that already tried to kill her. And a very, very low threshold for biopsy of any suspicious densities puts the “survivor” right back under the scary knife more often than the “average woman.” The remaining breasts of women with a history of cancer (or radiation) are treated like the heads of a family of vigorously nitpicking monkeys. The breast may be saved, yes, but it also may be bruised and biopsied at regular intervals for a lifetime. A bilateral mastectomy might not have been medically necessary for me, but it was psychologically crucial. Also, being unfailingly vain, I wanted a matched set right off the bat. There’s something you won’t read in the New York Times: mastectomy as a means to obtain the best post-cancer rack.
The latest “news” in breast cancer wasn’t really news to me. I know that statistics are on my side, that my complete surgical annihilation of cancers known and unknown won’t improve those numbers, that I might never have needed the treatment I got, and also that this might be the exact thing that kills me. Awareness isn’t helping us survive, but including more in our ranks. (And truth be told, the world hardly needs another blogging breast cancer survivor… plenty in my own family wish I would stop already.) But as we continue to shuttle more and more women at earlier and earlier stages into Survivorship, is the charge to Save The Breast the kindest dictate for these women? Should psychological and aesthetic reasons for a bilateral mastectomy be discussed, or will this continue to be touted as unnecessarily brutal “prevention?” I have no idea. Though I worship science, I’ve approached my own disease with fear and superstition: you’ll never hear this breastless girl say she’s “cancer-free,” nor will she ever tempt the fates or jinx her luck by tossing out Tatum.
The only badge of “survivorship” I’m willing to flaunt is One Year of Hair. It’s my Hair-iversary. I’m expecting presents.