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.
Life in general
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.
Today is my cancerversary. Eight years ago today I was diagnosed with breast cancer. Ordinarily, I don’t dwell on “what ifs” but this year feels different because republicans are threatening the healthcare of millions of Americans and, if it weren’t for Mary, my coverage would be on the chopping block.
For years, as a self-employed freelance writer, I bought bare-bones private insurance. I had a catastrophic plan with a $10,000 deductible and 90/10 co-pays, meaning I paid 90 percent and the insurer paid 10. Yup, that was my coverage until fall of 2004 when Mary got a job with domestic-partnership benefits. (Thank you Indiana University!) Less than five years later, I was diagnosed with breast cancer. On average, treatment for stage II breast cancer costs $100,000. And, double whammy, I was diagnosed twice. First in 2009 and again in 2010.
Medical expenses account for 62 percent of personal bankruptcy
Had it not been for our coverage, which the Indiana state legislature kept threatening to repeal because our relationship wasn’t state sanctioned, I’m guessing we would have sold our home, borrowed from my parents, and/or declared bankruptcy to pay my medical bills. No doubt, our debt and/or demolished credit score would have crippled us financially for the rest of our lives. I’m guessing that today, we’d still be repaying my parents, we wouldn’t be homeowners, and we wouldn’t have any retirement savings.
Mary and I barely escaped this fate. And, when Obamacare passed, I breathed a sigh of relief for all of my fellow freelancers and friends with pre-existing conditions. But now all of that progress is under siege. As humanitarians, we need to protect people’s right to get healthcare without going bankrupt and derailing their futures. I realize I’m preaching to the choir, but I hope you’ll join me in fighting like hell to keep the core provisions of the Affordable Care Act in place, including no exclusions for preexisting conditions and no lifetime payout limits. It’s the humane, compassionate, kind thing to do.
Corporate-sponsored charity walks do a disservice to many women. Look what just arrived in my mailbox…a pinkalicious mailer from Avon guilting women into walking on my behalf. “Will you walk? Or will you walk away?” Brilliant way to push our collective guilt/shame button. Thanks Avon!
Thanks too for perpetuating misinformation about breast cancer for your company’s benefit. That’s awesome! Surely your savvy marketing team knows that the 1 in 8 stat is misleading. If your mission is to educate women about breast health, why perpetuate bad information? Breast Cancer Action considers the 1-in-8 stat one of the Top 10 Breast Cancer Myths. Here’s what BCA says:
“This much-quoted statistic is an individual’s cumulative risk over an 85-year lifetime. It does not mean that at any given point, 1 of every 8 women has breast cancer. Rather, it means that if all women lived to be 85, one in eight would develop the disease sometime during her life.”
Shame on you Avon for using this misleading statistic to scare women into contributing to your cause.
Pink washing health claims on food packaging are obnoxious. They are confusing, misleading, and (often) inaccurate. As a science journalist, I know that 99.9 percent of these health claims are hogwash, and I find it morally offensive that food marketers prey on people’s fear of disease to sell products. I actively avoid buying products with health claims or pink washing. So, imagine my surprise when I opened a new container of miso and found a giant health claim lurking beneath the lid. Sneak attack!
Nothing kills my appetite more than a pink-ribbonly reminder of my mortality. Thanks Mr. Miso!
I will give them a tiny prop for including a study citation, even though its presence could be construed as manipulative because it adds superficial credence to the claim. So, I walked my anger right over to PubMed and looked up the study. A tiny part of me (the sucker part) hoped the health claim was true. But a much bigger part of me (the pompous part) wanted to feel “right” and, therefore, justified in my anger. Guess which part won?
Here’s the miso dish: In 1990, 21,000 Japanese women filled out diet questionnaires that included a question about miso soup. (BTW: Diet questionnaires are notoriously inaccurate because, really, who can remember what they ate for breakfast? Much less for breakfast six weeks ago?) Researchers followed the women for nine years and charted how many got breast cancer. In the end, fewer cases of BC popped up in those women who (reportedly) ate 3+ bowls of miso soup a day.
A few caveats: the study’s small sample size means its accuracy is suspect; miso’s magic only applied to postmenopausal women (bummer for me); I live in the West, not Japan, so my confounding factors are enormous; and, finally, who eats 3 bowls of miso soup a day for years on end? Not me.
When it comes to health claims, even those with citations, don’t be a sucker. Health claims on food packages are nothing but savvy marketing with a scientific sheen. I can only hope that, if we all vote with our dollars, food makers will get the message that we don’t want our fears manipulated at the grocery store.