The Last Word On Nothing

 

 

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It’s October, which means pink ribbons everywhere you turn. These breast cancer awareness campaigns can be hopeful and empowering, but they can also be deceptive and unscientific and can mask the realities of what it means to live with cancer.

Catherine Guthrie’s new memoir, FLAT: Reclaiming My Body From Breast Cancer offers an honest, sober, yet ultimately uplifting look at her experience navigating breast cancer. FLAT is an antidote to the “implacably optimistic breast-cancer culture” Barbara Ehrenreich describes in her famous Harper’s piece, “Welcome to Cancerland.” Which probably sounds horribly depressing and sad, but it isn’t. FLAT is a tale of love and resilience. It’s also a story about how doctors and journalists get cancer wrong and how they could better listen to the people who are living it day by day.

I’ve known Catherine since the early 2000’s, when we were both writing for some of the same magazines. I invited her to LWON to talk about her book, which came out September 25th.

Christie: Let’s start with the ribbons. In your book, you have a character, a neighbor, who finds comfort in pink ribbons, and you treat her outlook with great respect. At the same time, you had a blog titled “Pink is Not My Color,” in which you wrote, “I am post-pink ribbon.” What did you mean by that?

Catherine: I love that you’ve known me long enough to notice that shift in my thinking! You’re right. When I was first diagnosed with breast cancer in 2009, I had a knee-jerk reaction to pink. I saw it as infantilizing. A sign of Western medicine’s paternalism. A warning that I was going to be seen as a gender, not a person. And, as readers of the book know, that’s exactly what happened. (#surprise!)

Early on, I called my breast cancer blog “Pink is Not My Color.” But I’ve let that name go, and while pink-washing, the commodification of breast cancer, still makes my blood boil, my feelings toward women who embrace the pink ribbon have softened.

What changed was that, during the course of my treatment, I befriended one of my neighbors. She was diagnosed with breast cancer a year before me, and she never met a pink ribbon she didn’t like. For her, it was a symbol of identity, community, and hope. In seeing her allegiance to the pink ribbon, I was reminded of a time in my life when I adopted a different symbol for a similar reason.

I came out as queer in my early 20s and quickly adopted the rainbow as a symbol of pride. I bought rainbow stickers, rainbow patches, and rainbow car decals. This was in Denver in the early ‘90s, a time when it was perfectly legal for employers to fire queer workers and for landlords to kick out queer renters. I still remember the rush of adrenaline I felt as I stuck a rainbow sticker on the bumper of my dented, grey Honda – the car I drove to work and parked in front of my apartment. It felt scary, but it also felt self-affirming. (BTW my car was vandalized shortly thereafter in the parking lot of the Cherry Creek Shopping Center, an upscale mall.)

The rainbow was a shorthand way to communicate a shared experience. When I saw a young person with a rainbow pin on her backpack or someone with a rainbow flag on their porch, a surge of solidarity flowed through me. In finding my tribe, I found my strength.

For many breast cancer patients, like my neighbor, pink ribbons are a symbol of strength and solidarity. In writing FLAT I wanted to honor their choice. I took care to show that my neighbor’s relationship with her body and with her cancer was just as layered and complex as my own. Pink washing has turned the pink ribbon into a controversial symbol in the breast cancer community, and I wanted to cast it in a different light, one that shines on our similarities instead of our differences.

Christie: You were diagnosed at age 38, which was hard enough. But you also experienced two very major medical errors. The first happened when the surgeon removed your breasts and somehow left the tumor behind. There’s this popular notion out there that if we are just proactive about our medical care, we can ensure a measure of control. But here you were, a medical journalist with years of experience researching this stuff, and yet this still happened to you. What’s the lesson in that?

Catherine: The fact that two physicians made two blatant errors during the course of my breast cancer treatment was a wake-up call. Without spoiling any parts of the book, I will say the lesson has two parts: doctors are human and control is an illusion. I was in the best position possible to get stellar care. I was a white, college-educated woman with excellent health insurance. A women’s health journalist, I’d covered breast cancer for years. And I had a supportive spouse and a network of well-connected friends. As you can imagine, I chose my surgeon very carefully. On the day of my operation, he didn’t bring his A game. In the moment, the lesson was how to advocate for myself in a health-care setting. In the years since my lesson has been forgiveness. That said, I may have forgiven, but I certainly haven’t forgotten either how inattentive my surgeon was or how dismissive he was when I re-discovered the cancerous lump he’d left behind. That experience motivates me every day to talk with breast cancer patients about self-advocacy.

Christie: You call FLAT a “queer, feminist breast cancer memoir.” One of the most powerful lessons of your book is how the male gaze shapes the way that women with breast cancer are treated, both medically and metaphorically. You had surgeons lining up to surgically shape your body to their notions of femininity. The choice you ultimately made — to have a double mastectomy without reconstruction — was one that was never explicitly offered to you. My understanding, from your writing and our conversations, is that your experience was not unusual, right?  

Catherine: Right. Of course, breast cancer treatment reflects our cultural milieu. Society sees women – first and foremost – as objects of male desire. Within that paradigm, a woman’s worth is measured by her gazability (aka beauty).

In her essay “An Argument About Beauty,” Susan Sontag writes, “Beauty is part of the history of idealizing, which is itself part of the history of consolation.” With Sontag’s words in mind, consider how breast cancer patients present two tantalizing opportunities for a medical system steeped in sexism: the opportunity to achieve an “idealized” breast through reconstruction and the opportunity to “console” a woman who’s just been told she has cancer.

Is it any wonder that most breast cancer patients are pressured to reconstruct? And it’s important to clarify that just because health care providers unconsciously advocate for reconstruction they are NOT bad, ill-willed, or even misogynist. They are simply working within the dominant cultural framework. If you don’t learn how to check allegiances to the heteronormative paradigm, you’ll unconsciously perpetuate it.

To the average (“unwoke”) breast or plastic surgeon, a woman facing mastectomy is standing on the brink of losing her worth, her status, her desirability. If those are the stakes, who can blame physicians for pressuring women to reconstruct? Through a paternalistic lens, a breast cancer patient must reconstruct lest she lose the gaze of her boyfriend, husband, or – for single women – future boyfriends and partners.

It’s 2018, yet it’s still not uncommon for a woman who requests a double mastectomy without reconstruction to be sent to a psychiatrist by a surgeon who fears his patient has lost her mind. The fact that breast cancer care continues to privilege the male gaze speaks volumes to the lack of agency women have over their bodies, especially when it comes to anatomical parts understood to belong to men (breasts) or future children (uteruses).

Adding to the disorientation, from the patient’s perspective, is that the conversation is coded as “being whole.” The vague and subjective word “whole” crept into the breast cancer discourse in the mid-20th Century and through sheer repetition and inattentiveness has been legitimized and weaponized. Meaning decades of breast cancer researchers have used the word whole to refer to the remodeling of a woman’s lost breast, which gives it a very physical dimension. Yet whole is a word that means different things to different women, many of those meanings are more about energy, essence, or embodiment.

Christie: It sounds like you’ve uncovered a serious communication problem here. Doctors may not be speaking the same language as their patients.

Catherine: Yes, and without clear language and agreed upon terms and definitions, doctors and patients often misunderstand one another. For instance, a New York Times piece last year talked about how physicians routinely told women that their reconstructed breast would feel normal. Women who chose to reconstruct were shocked and upset to discover their new breasts were permanently numb. When women asked their surgeons what happened (and I’m clearly paraphrasing here), the physicians said, “Oh, we meant it would feel normal to your partner.” The tacit assumption is that the partner is male, and that women’s bodies should be available for men’s sexual pleasure.

Again, health care providers (for the most part) are unaware of what role they play in perpetuating these systems, but one way providers can “wake up” is to hit the pause button and ask a woman if a reconstructed breast aligns with her priorities. A recent study by Clara Lee, MD, a plastic surgeon and researcher at The Ohio State University, found that as many as 52 percent of breast cancer patients make reconstruction decisions that are misaligned with their priorities and, furthermore, don’t fully understand their surgical options. That’s a enormous problem given that 100,000 women will have a mastectomy this year alone.

In my job as a women’s health journalist, I’ve heard plastic surgeons say they gloss over information about potential risks and complications because women are upset about their breast cancer and they want to be the “happy” doctor. This omission (aka consolation) plays out in the scientific literature. The complication rates for reconstructive breast surgeries range from 20 to 33 percent. Yet studies show only 3 to 15 percent of women are told the risks. In an effort to console breast cancer patients, surgeons omit the risks.

To be clear, I’m not anti-reconstruction; I’m pro-information. To step into the role of a fully educated health care consumer, a breast cancer patient first needs to be informed of the pros and cons of each option. Unless physicians check their sexism at the door, they won’t be able to fully inform breast cancer patients about the surgical options. For instance, most mastectomy patients are not informed that going flat is an option. Women can’t order something if it’s not on the menu. My goal with my book, FLAT, and my public speaking is to get “flat” on the menu.

Christie: You mourned the loss of your breasts, and yet you had good reasons not to opt for reconstruction. You also decided to remove both breasts, not just the one with the tumors. That’s a decision that some researchers have argued is selected too often and without a medical reason. But there’s no doubt you understand the facts and statistics. What did you see that those experts didn’t?

Catherine: Great question! I so appreciated the facts and statistics available to me when I made my decision. That is the first step in making a fully informed decision. I requested a double mastectomy even though – in terms of my cancer – I only needed a single mastectomy.

What I am in a position to see that others cannot is what it feels like to inhabit my body. I have scoliosis. Because my spine undulates slightly in the shape of an “S,” it is incredibly sensitive to the distribution of weight on my frame. For instance, I can’t put my iPhone in the back pocket of my jeans and walk up to my neighborhood coffee shop. A few ounces of glass and metal torques my spine slightly but enough to cause discomfort. At the time, my health care providers were primarily breast cancer specialists (naturally). Even if I had asked them (and I didn’t) how the asymmetry of having one breast would affect my overall comfort, they would have no idea how to answer. That is where their knowledge ends and mine begins.

All of the information must be weighed but, at the end of the day, a person make the final decision by factoring in individual preferences and lived experience. Unfortunately, many breast cancer patients are rushed past this point of contemplation. In the United States, it is common for a woman to pinball from breast cancer diagnosis to breast cancer surgery in two weeks. The rush is easy to understand – a cancer diagnosis is alarming – but, in most cases, the urgency is unnecessary and sets the stage for hastily made decisions a woman may come to regret.

Waiting on the results of my genetic testing forced me to slow down. I had five weeks to make a choice that suited my priority, which was symmetry and maintaining my upper body strength, which is essential to keeping my spine aligned and pain-free. Many women prioritize reconstruction because they love having breasts, which I totally understand. But until medical providers start seeing breast cancer patients as complex individuals with a range of bodies, values, and priorities, this “save-the-rack” mentality will continue.

Christie: In the book, you write about how you backed out of a lucrative magazine assignment, because now that you had gone through cancer treatment, you couldn’t write the breast cancer story they wanted. You write that you felt a “moral obligation” to “tell women the whole story.” How did your diagnosis and experience as a breast cancer patient change the way you report on breast cancer?

Catherine: Susan Sontag called beauty magazines “the theater of feminine frivolity.” Of course, I knew that going into my career as a magazine journalist but, like all 20-somethings, I thought I could change things. I banged my head against that wall for many years.

The assignment you’re referring to was a round-up of breast cancer breakthroughs. When I delivered the piece, my editor at a prominent women’s magazine told me it was “too science-y” and insisted I write about a hospital in Chicago offering manicures with mammograms. I politely refused to write about free manicures as a “breast cancer breakthrough.” Her response was, in essence, do what I tell you or I will find another writer who will. After six weeks of reporting and writing, I walked away from that assignment and lost several thousand dollars.

Since my two bouts of breast cancer, I’ve become very picky about the assignments I accept. I’m particularly allergic to stories that suggest women should be doing more to protect themselves from this disease. Yes, there are a few things we know, but breast cancer remains maddeningly mysterious. But that doesn’t stop women’s health outlets from running stories about the 5 things you can do to avoid breast cancer every October. This approach to health coverage — one that preys on fear and engenders self-blame among the newly diagnosed — is an abuse of the power of the media.

The “manicure incident” happened in 2011. In the years since things have shifted. A new generation of editors is responding to the demands of a more culturally and politically savvy young readership. (For example, look no further than the indelible mark made on Teen Vogue by Elaine Welteroth when she was EIC in 2017.) And, a few months ago, I leapt at the chance to publish an in-depth investigative piece for Cosmopolitan.com that would have been deemed too risky for the stodgy women’s magazines of yesteryear. I attribute some of these changes to external market forces – the need to compete with online venues for increasingly sophisticated readers rather than a true awakening and acknowledging of women’s intellect – but it’s a start.

Christie: The book has three main characters — you, your partner Mary, and your beloved dog, Emma. I adored Emma, but I have to ask, where was Cheeto?? Was it artistic license to omit your lovely orange cat?

Catherine: Hahaha! It’s true. Cheeto’s feelings were a little hurt when he found out he’d been omitted. Poor guy. Here is how I explained the omission to him. In FLAT, Emma stands in for all animal companions everywhere. Animals can be such comfort in times of stress. I suffered from an incredible amount of anxiety after my diagnosis and during my treatment. I’ve always been a catastrophic thinker, and cancer magnified that tendency by a thousand fold. Cancer deals you a hand of unknowns — surgeries, scans, chemotherapy, radiation. Much of my anxiety was caused by worrying about the unknowns in my near future.

But animals are all about the now. So I leaned on all three of my pets, Emma and two kittens (Cheeto and Bindi) we adopted soon after my diagnosis, to pull me back to the present when I was spiraling into worst-case-scenario thinking. In the book, I made a writerly decision to craft Emma as a place of refuge for the reader. Cancer is depressing as hell. Spending that much time pressed up against a one-way mirror of my experience is a lot to ask. I wanted Emma to be — for the reader — what she was for me in real life…a respite from the onslaught of bad news and ensuing anxiety. Sadly, while I was writing FLAT, Emma died of cancer. Losing her was an enormous blow. She’d been a part of our lives for 13 years. And while her death broke my heart, I love that she is living on in this book and offering a smidgeon of comfort, support, and relatability to readers.

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Catherine Guthrie is an award-winning women’s health journalist and the author FLAT: Reclaiming My Body From Breast Cancer. For the past twenty years, her reporting, essays, and criticism have appeared in dozens of national magazines including Time; O, The Oprah Magazine, Slate; Cosmopolitan; Prevention; and Yoga Journal. She has faced breast cancer twice. She lives near Boston, Massachusetts.