Runner Chooses “Boston Over Boobs”

Today is the annual running of the Boston Marathon, no small affair in my adopted hometown. Last night, I read a feature story in the News Sentinel about a marathoner and breast cancer patient who chose the Boston Marathon over her breast reconstruction.

Peg Hoffman. Photo credit: Reggie Hays of News Sentinel

According to the article, Peg Hoffman of Fort Wayne, Indiana, went through four grueling surgeries in an attempt to reconstruct her breasts after cancer. Here are the two sentences that stood out to me:

“She chose the surgeon’s option for immediate breast reconstruction.”

And then a quote from Peg:

“I went into it (the first surgery) very carefree…but it got scary. I had a number of issues, infections, skin dying, and I had to have three more surgeries to fix these.”

Carefree to scary

I couldn’t help but wonder if Peg’s surgeon told her about the 30 percent complication rate of breast reconstruction? Or that most women undergo four or more surgeries? Did the surgeon reveal that immediate reconstruction has a higher complication rate than delayed reconstruction? If the surgeon had, most likely Peg wouldn’t have been “carefree” going into it or surprised when complications arose.

Soon JAMA will publish the results of the Mastectomy Reconstruction Outcomes Consortium (MROC) the first study to measure complication rates and final outcomes across reconstructive surgical options. My hope is that surgeons and patients alike will use this new information to guide their conversations and decision-making processes.

In the rush to reconstruct, it’s women who pay the price.

Eventually, Peg’s complications were so severe that she had to choose — either continue trying to reconstruct or go flat, let her body heal, and achieve her dream of running the Boston Marathon. She chose the marathon and even made a training shirt that said, “Boston Over Boobs.” Go Peg!

Peg’s hometown paper ran this feature as a feel-good story, but what this article does so successfully (and obliviously) is highlight the lack of information women are given prior to reconstructive surgeries and the high costs of reconstruction, not just the dollar amount but the months of healing required at a time when women are in the prime of their lives — when many would rather be following their passions, nurturing their careers, and/or raising their children.

I am not anti-reconstruction. I am pro-choice in every way. But women can’t make good health care decisions if they don’t have good information. Education = empowerment.

FLAT Update

Yee-haw! FLAT has a cover! I hope you like it as much as I do. Hopefully, the title on the physical cover will be “debossed,” which is the opposite of embossed. That means it’ll have a sunken texture, just like me. (Am I hilarious or what?) Okay, so FLAT’s pub date is only 22 weeks away. But why wait when you can pre-order from your local bookseller, IndieBound, or here? Can’t wait to share this with the world. But the nerves are kicking in and they are no joke. Here’s to six more months of sleepless nights (clink).

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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 (September 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.

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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?