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My FLAT Essay in “O, The Oprah Magazine”

My essay, “Learning Curve,” about going flat after breast cancer and how the decision complicated my relationship to fashion is in the March 2017 issue of O, The Oprah Magazine! A big THANK YOU to the editors at O for publishing an essay by an openly queer writer, an essay that pushes against the mainstream narrative of reconstruction.

I’ve been writing for women’s magazines for nearly 20 years and this is the first time I’ve been allowed to be “out” in an article for a women’s glossy. In the past, any reference to my queerness or my same-sex partner would be edited out either for “space” or because “our readers can’t relate.” Thank you Oprah editors for helping to dismantle this barrier in women’s media.

About this essay: the assignment editor asked for personal essays from writers who felt like their sense of personal style (internal) didn’t align with their fashion choices (external). I chose to write about how my flat chest means that I present to the world as a tomboy, even though I feel very feminine on the inside.

Here’s an excerpt from my FLAT pitch:

In the weeks after my surgery, I took to wearing bulky sweaters. My preferred post-mastectomy colors were black and charcoal grey as they best camouflaged “the situation,” a phrase I adopted from the reality show Jersey Shore. In those first few months I tried to shop for new clothes but nothing feminine fit “the situation” because, of course, women’s clothing designers assumed that women have breasts. Material meant to cover a normal woman’s curves would gather and bunch on my chest like two wilted corsages. Tailored tops and jackets with darts were a non-starter. Breast cancer patients in online forums advised women like me, women with misshapen chests, to wear small, busy patterns, such as zigzags, houndstooth, and even tie-dye. A month after my double mastectomy, I took their advice and bought a tie-dyed shirt off the clearance rack at Target in Bloomington, Indiana. I wore it for the rest of the summer.

Here’s a pic of the essay in the magazine.

 

Numbness and Reconstruction

Last week the NYT ran another feature by Roni Caryn Rabin: After Mastectomies, an Unexpected Blow: Numb New Breasts. Roni is one of the few mainstream journalists asking tough questions about breast cancer realities. Last fall, she penned a thought-provoking piece about folks who go flat post-breast cancer. Now, her first follow-up is a well considered examination of a common problem – numbness after reconstruction.

from the NYT

Background: According to the NYT, since 2000 the number of women undergoing breast reconstruction after breast cancer is up 35 percent. In 2015, 106,000 women had reconstruction. Many breast cancer patients report their surgeons did not make it clear that their new breasts would feel numb.

As one can imagine, numbness can be physically and emotionally disorienting for many women. Roni quotes women who’ve injured themselves and not realized it, women who can no longer feel the touch of their children and lovers, and women who feel like they were misinformed when their surgeons told them their breasts would “feel” natural.

Then she digs deeper into that key word: FEEL

Roni spoke to surgeons who explain that when they use the word “feel” in pre-surgery conversations – “as in your new breast will feel natural” – what they mean is that the reconstructed breast(s) will feel natural to other people (aka: men). They aren’t talking about how the breast will feel to the woman herself.*

Doctor-patient convos still centered on what “feels” good to men

Many women don’t realize until after reconstructive surgery that their new breasts will feel numb forever. Some women do regain partial sensation in reconstructed breasts but full sensation is extremely rare due to nerve damage.

My issue is not with numbness. (And, full disclosure, my flat chest has full sensation.) And, as an aside, I’d be curious to know know if flat-chested women are more likely to regain sensation than women who reconstruct.

My point is that plastic surgeons are framing the conversation in terms of what will feel best for men.* And that’s eff-ed up. As I’ve been saying for ages, breast cancer patients can’t make well-informed decisions without accurate and unbiased information. Language that privileges a man’s experience of a woman’s body over her own is biased (to put it mildly).

A woman’s decision to reconstruct is a big one. All reconstructive options require multiple surgeries (even so-called simple implants need to be replaced every 7 to 10 years). Breast reconstructive procedures have unusually high rates of complications, including infection, implant rejection, and lasting pain.

I’m guessing most women would weigh the reconstruction decision differently if they knew in advance their new breasts would feel numb, if their surgeons were able to reframe the conversation around what the new breasts might feel like to the woman herself, not to the man in her life.*

Only when women have complete, accurate, and unbiased information can they make a decision about reconstruction with a clear-eyed expectation about what it will feel like to live in their post-surgical body. Because they are the ones who will be feeling it 24/7 for the rest of their lives.

*In my world, lots of cis-ladies and non-gender-conforming folks touch breasts, but, in the mainstream medical world, the only folks thought to touch women’s breasts are cis-, het-men. 

Cancerversary

Today is my cancerversary. Eight years ago today I was diagnosed with breast cancer. Ordinarily, I don’t dwell on “what ifs” but this year feels different because republicans are threatening the healthcare of millions of Americans and, if it weren’t for Mary, my coverage would be on the chopping block.

For years, as a self-employed freelance writer, I bought bare-bones private insurance. I had a catastrophic plan with a $10,000 deductible and 90/10 co-pays, meaning I paid 90 percent and the insurer paid 10. Yup, that was my coverage until fall of 2004 when Mary got a job with domestic-partnership benefits. (Thank you Indiana University!) Less than five years later, I was diagnosed with breast cancer. On average, treatment for stage II breast cancer costs $100,000. And, double whammy, I was diagnosed twice. First in 2009 and again in 2010.

Medical expenses account for 62 percent of personal bankruptcy

Had it not been for our coverage, which the Indiana state legislature kept threatening to repeal because our relationship wasn’t state sanctioned, I’m guessing we would have sold our home, borrowed from my parents, and/or declared bankruptcy to pay my medical bills. No doubt, our debt and/or demolished credit score would have crippled us financially for the rest of our lives. I’m guessing that today, we’d still be repaying my parents, we wouldn’t be homeowners, and we wouldn’t have any retirement savings.

Mary and I barely escaped this fate. And, when Obamacare passed, I breathed a sigh of relief for all of my fellow freelancers and friends with pre-existing conditions. But now all of that progress is under siege. As humanitarians, we need to protect people’s right to get healthcare without going bankrupt and derailing their futures. I realize I’m preaching to the choir, but I hope you’ll join me in fighting like hell to keep the core provisions of the Affordable Care Act in place, including no exclusions for preexisting conditions and no lifetime payout limits. It’s the humane, compassionate, kind thing to do.

Finally: Going Flat in The New York Times

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Last night, a friend emailed me a link to a New York Times story with the note: “Why your book should be published! Now it’s a trend!” I clicked on the link. Held my breath. Then did a double take.

Was this a Halloween trick?

Was I dreaming?

Holy Shit!

Flat Folks Represent!

The story was Roni Caryn Rabin’s smart, thoughtful, carefully constructed piece about women who choose not to reconstruct after breast cancer. As I read the piece, scrolling through the stunning photographs, I braced myself for the worst — insensitive quotes, medical misogyny, and ill-informed rhetoric — but it never materialized.

Instead, Rabin made several points I’ve been making for years:

  • Reconstruction is not as simple as it sounds
  • Sky-high complication rates are breast reconstructions “dirty little secret”
  • Going flat challenges long-held assumptions about femininity, which is why…
  • Many physicians don’t inform women that going flat is an option

I will say more on this soon…but this is a game changer folks! HUZZAH!!!

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What’s Missing from the Mastectomy Conversation?

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For Pinktober Self Magazine featured photos from AnaOno Intimates, a company that makes lingerie for women who’ve had “breast cancer-related surgeries.” When the article came across my Facebook feed I clicked because, YES, of course I want to celebrate a company making bras and undies for breast cancer survivors!

But when the first gorgeous, gauzy photo of a woman popped up on my screen my heart sank. Her lovely lingerie-covered breasts looked nothing like my post-mastectomy body. I slowly began to scroll through the five portraits. “Please, please,” I muttered, “please just let one of these women be flat.”

Nope. Each of the five women in the article had a pair of full, lovely, curvy breasts.

Surely, I am not the only breast cancer survivor who is hungry for representations of women proud of their misshapen bodies. Nearly 40 percent of women in the United States who undergo mastectomy for breast cancer choose not to reconstruct, according to a study published in February 2014 in the Journal of Clinical Oncology. That’s 4 in 10 women. Other studies suggest the number is even greater. So where are these women? Are they in the self-congratulatory pages of Self Magazine? No.

Can we please stop rubber stamping homogenous femininity onto the bodies of breast cancer survivors?

The failure to portray a full spectrum of survivorship, in my mind, is not AnaOno’s because the company does have a picture of a flat-chested model on its site. The failure belongs to the magazine. Once more, a major women’s magazine narrowed its vision to see (and show) only women who chose full-on reconstruction. I’m a magazine journalist, I get it. Visibility is good. But I just have one request: can we PLEASE broaden the spectrum of what we make visible?