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Post-Pink Ribbon

Breast cancer awareness month is waning. Last week, at my neighborhood post office, I stood in line staring at a battered, two-foot-long, cardboard pink ribbon taped to the wall. Holding my nephew’s birthday present, waiting for my turn, gazing at the decoration’s tattered edges and sloppy tape, I felt – nothing.

I am post-pink ribbon. I just don’t give a f**k. Anger spent on pink ignorance zaps my energy. I want to channel my energy into life. Theresa Brown summed up the pink insult in yesterday’s New York Times, “Pink is about femininity; cancer is about staying alive.”

In December 2015, my friend Cindy was diagnosed with breast cancer. She had a lumpectomy, radiation, and chemotherapy. We talked on the phone. We compared notes on treatment side effects. We walked her dog. She got through it with grace and wit. She returned to work. All seemed well.

Six months later she had an odd pain in her rib cage. Worry chafed her voice as she described the sensation. I don’t remember what I said. I tried to be optimistic without being dismissive. We both lived with the fear of metastasis. We both knew what bone pain might mean.

Two weeks ago I was reading Sherman Alexie’s beautiful new memoir, “You Don’t Have to Say You Love Me.” when this passage jumped out at me:

Nobody defeats cancer. There is no winning or losing. There is no surviving or not surviving. There are only coin flips: heads or tails; benign or malignant; weight loss or bloating; morphine or oxycodone; extreme rescue efforts or Do Not Resuscitate; live or die.

Cindy lost the coin flip. Her cancer had spread to her bones.

Before Cindy was my friend, she was my physical therapist. She restored the range of motion in my left arm after radiation. She released the scar tissue across my chest from my double mastectomy. She reduced the swelling in my arm when lymphedema settled in for a visit. She was one of the most compassionate and talented healers I’d ever met and I’ve met quite a few.

She’d rubbed shoulders with the disease most of her life. Her mother had suffered from breast cancer. Cindy had spent much of her career as a physical therapist helping breast cancer patients regain freedom in their post-treatment bodies.

Cindy was in her late 50s when she was diagnosed. She had a son in college, a daughter in high school. We often talked about the future, her excitement about her new solo physical therapy practice and her dream of spending more quality time with her husband now that her children were grown.

Cindy died this month. She was 61.

Reject the commodification of women’s pain

Anyone who has lost a loved one to this disease knows breast cancer is not pink; to festoon  kitty litter, vibrators, and fire engines with pink ribbons eats away at the gravitas of this disease. It’s the opposite of awareness; it’s erasure.

Breast cancer is about staying alive. Who lives and who dies has nothing to do with who “fights like a girl” or who “kicks cancer’s ass.” Staying alive is a coin toss. This year 40,610 women in the U.S. will lose their coin flip with breast cancer. Let’s focus on them.

 

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FLAT found a publisher!

I am thrilled to announce that my breast cancer memoir, FLAT, is forthcoming from Skyhorse Publishing (October 2018). I am super-duper thankful to my partner, Mary; my agent, Helen Zimmermann; and my writer peeps at Grub Street.

FLAT is a queer, feminist breast cancer narrative the likes of which I desperately wanted to read but couldn’t find when I was going through treatment from 2009-2011. My goal in writing FLAT is to expand the conversation among breast cancer patients and their surgeons.

Many surgeons (knowingly or not) pressure breast cancer patients to reconstruct.

“Going flat” is rarely mentioned because we are taught to see breasts as paramount to a woman’s happiness. But, in the years since my own surgeries, I’ve heard from dozens who felt pressured to reconstruct and were summarily blindsided by complications, lasting pain, and countless follow-up surgeries.

Of course, many breast cancer patients love their reconstruction. I’m genuinely happy for them. My argument is that women need comprehensive, unbiased information to make educated health care decisions and, right now, that’s not happening.

Blogging v memoir writing

So, the seeds of what would eventually become my memoir, FLAT, were sown on this blog. Many readers encouraged me to write a memoir, and I naively thought a book would be a natural extension of my blog entries. Um. No.

When I moved from Bloomington, IN, to Boston, MA, in 2012, I took my first memoir-writing class at Grub Street, the nation’s largest non-profit writing center. By the end of my first class I was hooked AND I realized blogging and literary memoir had nothing in common.

So, I spent the next three years learning how to write literary memoir at Grub Street. The most amazing and rewarding experience was participating in the Memoir Incubator, a year-long MFA alternative, taught by Alexandria Marzano-Lesnevich, author of The Fact Of A Body: A murder and a memoir.

I couldn’t have written FLAT without Grub Street and Alexandria. I can’t wait to share it with the world. October 2018 will be here before I know it, and, in the meantime, I’m going to keep blogging about going flat.

The Decision to Go Flat

Recently, Florence Williams interviewed me for her Audible original series podcast Breasts UnboundFlorence Williams is a science writer extraordinaire and author of several award-winning books including Breasts: A Natural and Unnatural History (W.W. Norton 2012).

Click here to listen. My segment is 22 minutes into the podcast. I know not everybody’s got that kinda time, so I’ll see about getting a transcript. But, in the meantime, here are a few of my talking points.

  • My hope in writing FLAT was (is) to expand the conversation around options post-breast-cancer diagnosis. When I was diagnosed in 2009, I was pressed against cultural norms and assumptions of the importance of breasts and other people’s ideas about “what makes a woman.”
  • The predominant (and patriarchal) assumption is that breasts are paramount to a woman’s sexuality. Therefore, folks go straight from the breast cancer surgeon’s office to the plastic surgery consult without question. Patients are rarely encouraged to think about what they want for themselves versus for their partners and/or so they can pass in public as a woman untouched by cancer.
  • I applaud folks having the choice to reconstruct and the fact that health insurance companies are required to pay for reconstruction post-cancer. But breast cancer patients can’t make a fully informed choice unless they know their options. For example, I saw four different surgeons. Each described various reconstructive scenarios. Going flat was never mentioned.
  • Also never mentioned by the four surgeons were the risks of reconstruction, such as the high rates of complications and infections. Even under the best circumstances, most implants must be replaced every 8 to 10 years. A breast cancer patient who chooses implants as part of her reconstruction consigns herself to a lifetime of maintenance. This is no small thing.
  • Almost 40 percent of women in the United States who undergo mastectomy for breast cancer do NOT reconstruct, according to a 2014 study published in the Journal of Clinical Oncology. That’s 4 in 10 women. Other studies suggest the number is even greater. Yet, when we see representations of breast cancer survivors in the media they ALWAYS have breasts. Where are the 40 percent? Why are they invisible?

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.