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.
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.
A headline in today’s New York Times got my attention: Medical Errors May Cause Over 250,000 Deaths a Year. I didn’t die from my breast cancer surgeon’s medical error, but I did get a firsthand look at how these errors are glossed over by hospitals and insurance companies alike.
Short version: In March 2009, my breast cancer surgeon gave me a double mastectomy but missed the cancerous lump. I discovered the error a week after my surgery when the surgeon removed my drains and, reflexively, my fingers flew to the spot on my body where the lump had been and — gulp — it was still there. (Here is the blog post.)
My lump had been close to the skin, high on the breast. Six o’clock. The lump’s location meant I wasn’t a candidate for a lumpectomy. So, I chose a double mastectomy without reconstruction. Six weeks after my initial diagnosis, I had no breasts but the pea-sized lump of breast cancer still sat brazenly on my chest.
And so began my crash course in how to advocate for yourself in the surgeon’s office. In short, I refused to leave until the surgeon acknowledged his mistake, took accountability for it, apologized and scheduled a do-over mastectomy. (This is a big part of my memoir FLAT…and is way too long to detail here but suffice it to say it was a horrifying and traumatic experience.)
Two months later I got a lesson in how insurance companies deal with medical errors. Paperwork arrived in the mail showing my surgeon billed my health insurance company his full fee for the do-over mastectomy. I called the company to tell them they should deny the charge. After all, it was the surgeon’s mistake. Why should he profit from it? The insurance rep told me it wasn’t his job to parse what was or wasn’t a mistake. If the billing made sense, they paid it. And, just like that, my mistake was recast as a recision. In the records, my breast surgeon simply “went back for more tissue.” No one mentioned it again.
I was a health journalist. I interviewed three surgeons for the job. I chose the one with the most experience and the best credentials. I did everything I could possibly do, except control for human error. The NYT article reports that if medical errors were considered a disease it would be the third leading cause of death in the US behind heart disease and cancer. Whoa.
No one expects health care practitioners to be perfect but 250,000 deaths a year? We can do better.
After my double mastectomy, I published an essay on Slate in response to Peggy Orenstein’s breast cancer op-ed that ran in the New York Times last week. You may recognize a few sentences from my last blog entry. That’s because this topic has been rolling around in my head for a few weeks. Journalists and medical experts who second-guess breast cancer patients’ treatment decisions are a thorn in my side. I’m a fan of medical evidence and a good doctor-patient conversation. But the tone of some of these recent articles is paternalistic and sexist.
Peggy points out that researchers have used the word “epidemic” to refer to the number of women choosing to remove their healthy breast along with the cancerous one. Really? I’m sorry but Typhoid was an epidemic. The 1918 flu was an epidemic. AIDS was (and in many places continues to be) an epidemic. Women making gut-wrenching decisions about how they want their post-cancer bodies to look is not an epidemic — it’s a choice.
I welcome the conversation about why rates are increasing so dramatically, especially among young women diagnosed with the disease, but let’s do so with respect for the people involved and the complexity of the decision.
Last week a new study with an inflammatory headline went viral: “Double mastectomy ‘not necessary’ for most women.” The study, from the University of Michigan Comprehensive Cancer Center, found that 70 percent of women who had a double mastectomy following a breast cancer diagnosis did so despite a very low risk of facing cancer in the healthy breast.
What troubles me about this genre of breast cancer research is the finger-wagging tone. Full disclosure, I had a double mastectomy without reconstruction in 2009. I was 38. I knew the risk of cancer appearing in my other breast was relatively low, but I made the decision that was right for me. In choosing a double mastectomy, I was in the minority. Only 8 percent of breast cancer patients opt for double mastectomy. That means, 92 percent of us choose something else. So why does that 8 percent drive researchers to distraction?
I picture breast cancer researchers in their labs, their clinics, their meetings, scratching their heads and asking themselves, “why do these crazy ladies lop off their breasts? They obviously don’t have the facts. They are making an emotional decision based on fear and anxiety.” And, for some women, that might be true. They might not know that (for most) a diagnosis of breast cancer in one breast does not increase the likelihood of breast cancer recurring in the other breast. They might decide out of pure fear. But I’m guessing the real reasons why 8 percent of breast cancer patients choose a double mastectomy are much more nuanced.
My decision to have a double mastectomy was complicated. A big factor for me was not wanting to have one breast. It might sound silly to some but I didn’t want a singleton. I wanted to be able to wake up, pull on a t-shirt, and walk the dog. That didn’t feel like too much to ask. I didn’t want to have to wear a prosthesis just to feel “even.” Reconstruction, which solves this problem for a lot of women, was not a good option for me. Another factor in my decision was that my remaining breast no longer felt sexy. I feared it would become a lonesome reminder of a terrible time in my life. Plus, I wasn’t planning on having children or breastfeeding.
For me, a double mastectomy made a lot of sense. But my reasons were all very personal and, therefore, difficult to measure in a research setting. I’m guessing other members of the double-mastectomy club have equally complex reasons for making the decision we did. Why must researchers continue to spend good money trying to figure out why we weren’t more swayed by data? Got research money to spend? Spend it on saving women’s lives not second guessing our decisions.