Last week, I unleashed my (not so) inner feminist in an interview with Christie Aschwanden. Christie is not only a top-notch science writer but also a dear friend. She has written extensively about controversial topics in the breast cancer community. She is on #teamscience, which is not an easy team to play for these days. And, so, I deeply appreciate her inviting me to explore some complex ideas I’ve been grappling with these past few months, including how health care providers unintentionally perpetuate systems that harm breast cancer patients. When writing my memoir, FLAT, I aligned closely with the craft of creative nonfiction genre. I worked hard to stay rooted in the roles of character and narrator. Meaning, I didn’t expand my voice or my view beyond the scope of the story and direct connections to the story. So, in some ways, this Q&A with Christie was a welcome exercise as it allowed me to speak in a different register. I got to fully explore some complicated ideas and draw on inspiration I found in Susan Sontag’s essays. I hope you’ll take a look at the Q&A and let me know what you think.
Ten years ago, when I bucked four surgeons’ advice and decided NOT to reconstruct, I didn’t know a single other cis-gendered breast cancer patient my age who’d made that choice. I couldn’t help wondering “What was wrong with me?” that I craved simplicity rather than reconstruction. To feel the softness of a well-worn tee shirt against my skin? To use my back muscles to support my spine rather than to buffer an implant? To be set free from extra surgeries and screenings?
Today, I’m in the company of thousands of women who are reclaiming their bodies and their lives from cancer. Emily Hopper, 32, is a force of nature. She is a breast cancer advocate, an artist, and a mother.
“Not having breasts gives me a sense of freedom I never knew I wanted. In some ways it feels like a new level of womanhood,” Emily Hopper.
Emily is the owner-creator of EMPOWERHAUS, an online business whose mission is to embolden and inspire women, breast cancer patients, and supporters of all stripes. We met in an online community for “flatties” and became fast friends because she is wicked smart, hilarious, and ass-kicking.
This week, JAMA Surgery published the final results of the Mastectomy Reconstruction Outcomes Consortium (MROC) — the first comprehensive look at how cancer patients fare (physically and emotionally) after breast reconstruction. The New York Times had excellent coverage (aside from the cringe-inducing ending).
Quick summary: MROC researchers looked at 8 different breast reconstructive procedures performed by 57 different surgeons at 11 sites across the US and Canada. They enrolled 2,224 patients and followed them for four years.
Last month, I spoke with Ed Wilkins, MD, MROC’s lead author and a plastic surgeon at the University of Michigan in Ann Arbor. “We designed and conducted MROC because the decision to reconstruct isn’t just one decision, it’s a constellation of decisions,” he said. “And our patients were getting lost.”
Don’t worry — he and I have worked through it (hi dad!) — but his first reaction was to ask me to hide myself (to buy into my shame) to spare himself and others the discomfort of seeing my true self.
Fifteen years later, I was diagnosed with breast cancer, and I heard a hint of my father’s voice in the words of the plastic surgeon. He offered to reconstruct my breast by carving out a slab of my back muscle, wrapping it around my front, and tucking it over an implant, like a steak over a tennis ball. (Called a latissimus dorsi flap, the surgery is one of the most common reconstructive options after breast cancer.)
“Isn’t that back muscle doing something?” I asked.
“You’ll look normal in clothes,” he shrugged. “That’s all most women want.”
Really? Is that really ALL most women want?
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.
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.”