breast cancer

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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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.

 

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?

A Happy Pink Story: The World Wants What It Wants

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In his essay “On Homecomings” for The Atlantic Ta-Nehisi Coates wrote was about his deep longing to move back to his old Brooklyn neighborhood and how his plans were thwarted by celebrity-chasers. About the mining of his privacy for a gossip rag, he wrote: “If the world wants a ‘writer moves to Brooklyn Brownstone,’ story, it’s going to have one no matter your thoughts.”

On the eve of Pinktober, this sentence struck me hard because I’ve had a similar experience with breast cancer.

The world likes a breast cancer survivor with good-as-new breasts, but that is not my story.

I chose not to reconstruct because I didn’t want to sacrifice a back muscle to create what the plastic surgeon referred to as “a breast-shaped mound.” Now, seven years later, I’m not arguing against reconstruction. I believe women need to be fully empowered to make any and all choices about their bodies. But a fully informed choice is predicated on having all the options.

A lot of women take comfort in the happy pink story “no matter your thoughts.” But I can’t help but wonder how many women don’t yearn for a story with an alternative ending. In the weeks after my breast cancer diagnosis, I saw four surgeons and not a one mentioned going flat was an option for me. Going flat isn’t every woman’s choice but it needs to be on the menu.

Like fairytales reimagined with strong girls who don’t need to be saved by a prince, I’m hoping my story about a breast cancer survivor who didn’t need to re-create her breasts to feel whole again, to feel like a woman again, will be a refreshing update to a stale ending.