Choosing Not to Reconstruct

So Much for Passing

There is no passing when you’re naked. That’s what I learned on my summer vacation when Mary and I went to Orr Hot Springs, near Ukiah, California. For more than ten years the hot springs has been one of our favorite retreats. Some of our first canoodling was in a tub at those Springs and we make a point of stopping for a night or two anytime we are north of San Francisco.

I love the remoteness of the Springs, tucked away in a fold of hills between Ukiah and Mendocino. I love the smell of sulfur and hot brakes that greets you when you throw open the car door at the front gate. (The car’s brakes smoking from a descent ripe with hairpin turns and bedazzling views.) Most of all, I am intrigued by the hippie-dippy folks it attracts. Women with lazy smiles and wavy, Rapunzel hair who swim like mermaids. Men with bodies wallpapered in tattoos who convey no other vocation than simply drinking in the goodness of life.

Thirteen years ago, during a yoga retreat at the Springs, I got naked in public for the first time—no small feat for a Catholic girl from Kentucky—but I’m afraid this trip may have been my last. My first post-mastectomy foray into buck-nakedness made me acutely aware of how much smack I’ve been talking about passing. Mea culpa. Unlike people who’s scars are highly visible, I am lucky to have the option of passing  as a flat-chested woman. Strutting my naked, breast-be-gone stuff was tough. Much tougher than I expected.

From the moment I slipped into my first soak, the feeling of loss was akin to taking a bowling ball to the gut. Not a loss of my breasts, per se, but the loss of comfort in being my bare-naked self. I felt ugly and scarred. I felt alone. I wanted to hide behind my towel, Mary, a fig leaf…anything I could get my hands on. Yes, I know my scars are still fresh—figuratively and literally. And, sure, showing up naked after such an ordeal is “brave.” Whatever. None of that seems to matter. What matters is that, for the first time in my life, I wanted nothing more than to take cover, and that felt shitty.

Breasts: More than meets the eye

My most recent post touched on some hot-button issues, so I’m going to take a moment to clarify. I didn’t mean to open fire on a woman’s right to choose reconstruction. What I am incensed about is a society that narrowly defines not only what choices women have, but also what choices women can envision for themselves. I take offense not at the choices women are offered within the structure but with the structure itself. I’m no feminist scholar (some of my best friends are and maybe they will chime in), but I think this touches on one of the core fractures between liberal and radical feminism.*  

More specific to my experience with breast cancer, I take umbrage with the fact that I consulted four surgeons—two breast cancer specialists, a general surgeon, and a plastic surgeon—and not one of them mentioned going flatchested as a viable “choice.” Instead, my “choices” were laid out like so many confections on a silver platter. Each and every item on the menu involved saving the tatas, and, as a good breast cancer patient, my job was to choose the one that looked the sweetest and not ask questions, especially regarding, say, pain, recovery times, or (god forbid) complication rates.

When I made my “non-choice,” I was treated more like a stubborn child who refused to eat her veggies than a well-informed woman who made a thoughtful decision about her health care. In refusing to play along, I felt dismissed as an anomaly. And I’m guessing I was.

Last month, in a short email exchange on the increasing number of women who choose reconstruction, Marisa Weiss, MD, founder of BreastCancer.org and a leading breast oncologist, wrote, “Most women whose surgeons bring it [reconstruction] up will pursue it.” For me, this observation begs a more complicated question–not about choice but about framing. How are the surgeons bringing up the topic of reconstruction? Or even of lumpectomy versus mastectomy? How do their own biases weigh into the discussion? Physicians are only human. They can’t possibly divorce their own loaded feelings about breasts from conversation with their patients. Or can they?

A couple of years ago, I posed similar questions regarding surgeon bias to Dale Collins, MD, director of the Comprehensive Breast Oncology Program at Dartmouth Medical School. Collins is a plastic surgeon who specializes in breast reconstruction. “The reality is that doctors push and pull in both directions, and they will typically pull patients in the direction of their bias every time,” she says. Then she added, “And a lot of surgeons are men, and men presume that women don’t want to part with their breasts.”

Whoops, now I’ve gone and gotten all down-with-the-patriarchy on y’all. And didn’t you just know it was coming? After all, I am a man-hating lesbian separatist. But, seriously, this circles back to my point about questioning the structure, not a woman’s right to choose her own chest. I don’t want to take away a woman’s breast implants or deride her desire to replace the breasts she lost to cancer. (God knows I miss mine every day.)  I just want to see the choice to go “flat-and-fancy-free”  right next to the choice to get triple-layer tatas with fake nipples on top on breast surgeon’s dessert menus. Because if a woman truly felt that she wouldn’t be seen as “less than” for being breast-free, I can’t help but wonder if more breast cancer chicks wouldn’t gravitate toward the flat side.

 

 

*Special thanks to my sweetie for helping me to think this stuff through during our many long walks together. You are amazing in every way. 


The Season of Breasts

Summer is the season of wear-as-little-as-you-can-get-away-with weather. And everywhere I look I see breasts. Breasts that are barely covered by bikinis. Breasts holding up colorful tube tops. Breasts peeking out from behind skimpy sun dresses. Breasts, breasts, breasts.

I didn’t pay that much attention to breasts before my surgery. But now that mine are no longer, I can’t see a pair without feeling a bit melancholic, and the negative space of my missing breasts feels amplified by the proliferation of boobage around me in a season of scantily clad bodies.

A few weeks ago, I endured my own little rite of passage when I wore a bathing suit for the first time since my double mastectomy. No bones about it–I am flat. No, let me be more clear–I am VERY flat. Flatter than flat. Truth be told, I am closer to concave. But, even in a tankini, I pass as an extremely flat-chested woman.

Passing as a woman with a flat chest versus being identifiable as someone who had breast cancer and chose to have her breasts amputated puts me in an uncomfortable, yet familiar, position.

Familiar because I am often mistaken for a straight woman. Over the years, I’ve made my peace with other people’s uncertainty (or mistaken certainty) about my sexual orientation. But passing equals a certain amount of invisibility and, while I won’t digress into a discussion about the pros and cons of passing as straight, I feel much more conflicted about passing as someone untouched by cancer.

Thanks to the “magic” of breast implants and prosthesis, most mastectomy patients pass with ease. And once you’re seated upon the breast cancer merry-go-round, the energy put into “saving the rack” (as one friend wryly put it) nearly equals the energy put into “saving your life,” and the importance of passing is a huge part of the sales pitch.

“You’ll look normal in clothes,” the plastic surgeon promised. “No one will be able to tell,” he assured me. But I wasn’t interested in fooling anyone. Especially when I dug a little deeper into what was involved. The first step is surgery to place two deflated, accordion-like, plastic devices between my chest wall and my pectoral muscles. The second step is to slowly, over as many as eight months to a year, inflate said accordions through a plastic straw sticking out of my chest. (Yes, like a blow-up doll.) As the “tissue expanders” inflate, they painfully  and gradually pull the muscles up and away from their moorings on bone. Remember, these are hard, plastic shells capable of pulling a person apart, so forget doing “crazy” stuff for the next year or so, like lying on your stomach or hugging. Then, the not-so-final step is surgery to remove the expanders and pop in silicone or saline implants. I say “not so final” because implants are notorious for leaking and, at best, must be replaced every 10 years. Apparently, I am one of only a handful of women to say “thanks but no thanks.”

According to an article in the October 2008 issue of the New England Journal of Medicine, roughly 180,000 women were diagnosed with breast cancer last year. Of those, two thirds opted for a lumpectomy with radiation; one third chose mastectomy; and 56,000 underwent reconstruction–double the number from just a decade ago.

Criticizing this save-the-rack mentality is akin to touching the third rail of breast cancer care. Thousands of women fought hard to require my insurance company to fork over $30,000 for a boob job. A great irony since they refuse to pay for BRACA1 and 2 genetic testing, which costs a fraction of the price and reveals surprisingly accurate information about a woman’s odds of having a cancer recurrences, either of the breasts or ovaries. But, of course, the results of my genetic test don’t look very good under a sweater.

I know I sound angry, and I suppose I am. I’m angry that breast reconstruction is a distraction; an easy way for women and their doctors to fixate on “breast cancer as make-over” while dodging the bigger issues, like the lifestyle and environmental factors that contribute to cancer rates and recurrences. Much less a frank discussion of how reconstruction makes future lumps harder to find because  breast implants obscure mammograms.

I’m angry that, if I had listened to the three different surgeons, all of whom recommended reconstruction, I might have woken up from my first surgery with tissue expanders in my chest, and I doubt I could have felt the cancerous lump left behind.

I’m angry that so little has changed in the 30+ years since Audre Lorde compared women offered breast prostheses after mastectomy to babies pacified with candy after an injection. That’s exactly how I felt when a nurse brought me two Nerf football-sized prostheses the morning after my double mastectomy. How can we still be here?

To be 38 and to have refused reconstruction makes me a rare bird. In a room of breast cancer survivors, my chest is the only one that resembles a 12-year-old boy’s. The local breast cancer center (where I go for the free massages) is the one place where I don’t pass as flat-chested. But instead of feeling embraced by my peeps, I feel rebuked. I get the distinct feeling that the “pink sisterhood” is not pleased. During one visit, as I waited in the lobby for the massage therapist, a staff member smiled cooly and handed me a brochure. Inside was information about a local non-profit group that purchases breast prostheses for poor women. She obviously assumed I was destitute because why else would a woman go out in public without her boobs?

As someone who has always felt like an oddball, I find my new “otherness” depressing. Of course, outside of the breast cancer community,  shouldn’t I just be content to pass? But invisibility is cold comfort. Soon after my surgery I read Lorde’s writing on the topic of invisibility and breast cancer and her words resonated deeply with me. In The Cancer Journals she writes:

If we are to translate the silence surrounding breast cancer into language and action against this scourge, then the first step is that women with mastectomies must become visible to each other. For silence and invisibility go hand in hand with powerlessness. By accepting the mask of prosthesis…we reinforce our own isolation and invisibility from each other, as well as the false complacency of a society with would rather not face the results of its own insanities. In addition, we withhold that visibility and support from one another which is such an aid to perspective and self-acceptance. Surrounded by other women day by day, all of whom appear to have two breasts, it is very difficult sometimes to remember that I am not alone.

Yes, her words are inflammatory, and, yes, her full-out condemnation of breast prosthesis is harsh, but I would trade every pink ribbon on the planet to see a few more flat-chested, 30-something, breast cancer survivors. To know that I am not alone in refusing to believe that a couple of new boobs will make everything okay.

Attack of the Breast Cancer Stylistas

Since my breast cancer diagnosis, I’ve been lapping up Dana Jennings’ weekly essays in New York Times. An editor at the paper, Jennings is undergoing treatment for an aggressive form of prostate cancer, and his wry essays brim with the kind of dark humor and honesty I crave in an otherwise saccharin world of cancer prose. But his essay in today’s NYT made me want to punch him.

Jennings riffs about how much power he draws from his cancer hairdo–a buzz cut. “I needed the primal ferocity that a buzz cut proclaims,” he writes. “I needed to look like a soccer thug or an extra from ‘Prison Break’ to help get me through surgery.” He refers to his do as a “visible bulwark against the tide of emasculating side effects caused by the treatment for prostate cancer.” Then, to widen his lens, he quotes Anatole Broyard, who, in his memoir Intoxicated by My Illness, wrote, “It seems to me that every seriously ill person needs to develop a style for his illness.”

Okay. Call me sensitive but the combination of Jennings crowing about his hyper-masculine hair while backing the idea that seriously ill folks should “get a sense of style” rubbed me the wrong way. I have no beef with Jennings or his hair. I’m thrilled that his GI Joe look boosts his masculinity. But, while he is reveling in his inner caveman and basking in the glow of societal acceptance of “tough guy hair,” my fledgling attempts at “cancer style” have been shot down by the women I call “breast cancer stylistas.”

I have many examples but here’s my fave:

The morning after my double mastectomy a gray-haired nurse steered her long, shiny metal cart into my hospital room. A veritable mastectomy patient’s ice cream truck, the cart bulged with magic camisoles. In less than ten minutes, she had me out of my hospital gown and into my new, white cotton shell. My first feeling was one of relief because the clever cami had two secret pockets designed specifically to hold the two feet of tubing and hand-grenade-sized drains sprouting from either side of my chest. (Up until that point, I really had no idea what to do with these unwelcome appendages.) But my sense of ease was usurped by a feeling of horror and confusion when she held up what appeared to be two Nerf footballs and aimed them at my chest. Awkward glances bounced between me, my Mom, and  Mary, as the no-nonsense nurse showed me how to insert the foam ham hocks into the upper half of the camisole–so I would feel “more comfortable in my clothes.”

Wha? Fake bazookas? Already? And five times bigger than my dearly departed? Sheesh, my chest wasn’t even cold yet. The girls had been gone less than a day. I felt like the schmuck who takes a date to his wife’s funeral. Needless-to-say, I took a pass. (No pun intended.) Let me be clear, I’m not dissing women who choose breast reconstruction or wear prostheses. I firmly believe in a woman’s right to choose her own chest. But I think these choices—whether to go flatchested or opt for brand new double Ds–need to be made with eyes wide open and a full understanding of risks and rewards. The fact that the nurse didn’t bother to ask me my preference was only half of the insult. The kicker was that those Hasbro rejects were decidedly not about helping me find my style. They were more about helping me find my denial. And denial is not stylish.

Jennings almost redeems himself when, toward the end of his essay, he says he’s “not interested in keeping stoic secrets in which cancer becomes the fetus of shame buried in the root cellar.” Great image, but I wish he’d step on the clue train. There is a huge industry devoted to keeping us breast cancer chicks in the root cellar, and it has an army of well intentioned breast cancer stylistas doing its bidding (god love’em).

To top off my ire, Jennings quotes Broyard again: “only by insisting on your style can you keep from falling out of love with yourself as illness attempts to diminish or disfigure you.”  

Am I disfigured? Well, that depends on whom you ask.

Am I diminished? Hell no. 

Or, at least, not yet…check back in a month or two. With the possibility of chemo on the horizon, I’m sure the breast cancer stylistas have big plans for my bald head and I’m certain my new look won’t include a buzz cut. 

 

 

One Day and Counting

I feel ready. Ready to get it over with. Ready not to have a cancerous lump clinging to my chest anymore like a broach. At night, strange thoughts wander past: is it better or worse to have a cancer you can feel? a tangible tumor? If my tumor was deep inside my body, would it be more out-of-sight, out-of-mind? 

My initial reaction to the lump was panic. I wanted it out, and I wanted it out right now. Ever-helpful, Mary jokingly offered to rip it out with her teeth…a line she still uses when I need a laugh. But I’m glad I took my time. I know a lot of women make rapid-fire treatment decisions but that’s not my style. I needed the first two weeks to absorb the shock. The third week to wrap my head around my options. The fourth week to accept my choice.

Last year, I wrote  a story for Time.com about how surgeon bias can influence women’s decisions around choosing lumpectomy versus mastectomy. Reporting this story was an eye-opener but living the experience was sobering. As predicted, all three breast cancer surgeons recommended a lumpectomy with reconstruction. None of them asked me how I felt about having an implant in my left breast, instead it was all about how quickly I could regain the “appearance” of a breast. All three bent over backwards to assure me that no one would know the difference. No one like whom? I wondered.  They coo’ed that I would look “normal.” Normal for whom? 

The Ken-doll plastic surgeon talked at me for an hour and I didn’t like what he was selling. After all of these years and millions of women come before, how is it that my choices are a) harvest parts of my own body that I’m happily using elsewhere (thank you very much) b) saline or  c) silicone (of course, he didn’t mention the 10-year life span on those pups). Want your nipples? Sorry. Want sensation in the giant swath of skin from navel to clavicle? Sorry, no can do. What could “Dr. Feel Good” do for me? As it turns out, nothing. Because what feels good to me is getting this damn tumor off my chest, and escaping this ordeal with all of my muscles in tact, and as few man-made objects in my body as possible. 

Thanks but no thanks.