Community Health

Louisville native Catherine Guthrie has written about breast cancer as a health journalist, but that didn’t prepare her for her own diagnosis. She’ll be at Carmichael’s Bookstore Thursday night with her new memoir, “Flat: Reclaiming My Body From Breast Cancer.” I spoke with Catherine about her cancer experience and her decision not to have reconstructive surgery. 

You can hear the interview in the player below. Also below you’ll find a transcription of our conversation. It has been edited for length and clarity.

“When I went in to meet with the surgeon — the plastic surgeon who was given the responsibility of the cosmetic outcome of this surgery — he’s like, we’re going to give you a mastectomy, and we’re going to do this great reconstruction where we take a portion of a muscle from your back. We keep one end of it connected to its blood supply and we tunnel the other end under your arm, and we wrap it around the front of your body, and we place it over an implant. And all I could picture in my mind’s eye was a steak laid over a tennis ball. And I looked at him and I asked, ‘Well, isn’t that muscle doing something? It’s in my back.’ And he said, ‘Oh, most women never miss it. They just want to look normal in clothes.’ And I was dumbfounded in that moment, as a health journalist, as someone who’s very active in her body and really enjoys having upper body strength.

“I was being asked to trade my sense of strength and personal power in my body for the facsimile of a breast that would really only look quote-unquote normal to strangers. To people who didn’t know me, who didn’t know what had happened to my body. Because of course, every night when I got undressed and got into bed with my partner, I wasn’t going to be fooling anybody. It wasn’t going to look normal to us, so it made me really question who was I going to be doing the surgery for.”

That’s a great point. And It’s not going to function.

“It would be numb to the touch. It would have no nipple. And It would cost me a section of my back muscle. And that was too great of a price for me to pay. And I was so lucky in that my surgeon was very respectful of that choice, and he honored the request, and gave me full autonomy to make that decision. I felt really lucky about that, because a lot of women don’t get that same response from their surgeons.”

That’s something that you tackled in an article. It’s one of those things that’s surprising but not surprising. You know, it’s disappointing how not surprising it is.

“Yes, I wrote an in-depth investigative feature for Cosmopolitan magazine looking at women, primarily, who wanted to go flat and were denied that choice. The woman I profiled in the piece, Kimberly Bowles, she asked her surgeon to make her flat. He agreed. And when she was on the operating room table with the anesthesia dripping into her vein, she heard him say, ‘I’m just going to leave a little extra skin in case you change your mind.’ This is something that happens, as it turns out, to women all over the country and all over the world. Where surgeons assume or suspect the woman is not making quote-unquote the right choice, and give her a surgery that she does not want.

“And I’ve definitely heard lots of women say that they’ve been asked to meet with a psychiatrist and get a letter before the surgeon will do the surgery, to Make sure they are quote-unquote in their right mind before they’re allowed to make this choice for themselves for their bodies.”

It reminds me of stories about doctors denying women tubal ligation. It’s almost like we’re not wanting what they think we should want. So they’re going to give us what they think we should want, not what we are actually saying we want.

“Exactly. That we still have a health care system where women’s health is seen as falling under the purview of men, as far as what men think women want for their breasts. And this idea that women’s bodies in some way belong to men — at least our breasts — which is similar to the idea that our reproductive organs belong to our future children. That they are not ours to make decisions about. And the ways these ideas and presumptions and biases worm their way into medical care is just… I’m just shaking my head at the microphone. I’m a little bit speechless. The idea that this is still something women as patients, as people, have to be on guard against at every turn.”

Did the surgeon suggest any other methods of reconstruction?

“That’s a great question, because there are a lot of other options for a lot of other women. But based on the size and shape of my body — I’m a pretty slender person — that was the only option for me. And the surgery is called a latissimus dorsi flap, and it is one of the most common surgeries done for women who are smaller.”

I wanted to talk with you a little bit about breast cancer… Sisterhood. Swag. Pink teddy bears. When you get a diagnosis you’re plunged into this hyper-stereotypically-feminine world. But it’s almost not even like grown woman femininity. It’s like baby girl land. I guess I’d just like to hear you talk a little bit about this cloud of pink that goes along with a breast cancer diagnosis and what that does to you. Here’s a time where you really need to feel empowered, and you really need to feel strong, and capable of making decisions. And that is the very moment that people start throwing toys at you. “You got this, girl. Here’s a teddy bear.” And it makes sense, but it’s so a thing.

“You are so right. It is so a thing. And you’re touching on exactly what is so offensive to so many of us is that it is infantilizing. The idea that women need teddy bears, that women need pink journals with pink pens. The right pink ink to record our pinkest of pink thoughts, about this disease that is threatening our lives, is the most offensive thing I can imagine being hit with at the moment of diagnosis. And exactly what you said about: this is a moment where we need to feel strong and empowered.

“We need to feel centered in our adult selves, and we need truth. We need doctors who are willing to level with us, to treat this disease with the seriousness that it deserves. To be faced in that moment with this infantilizing idea that we will be soothed or comforted by a teddy bear, or by a color that is culturally used to signify little girls and childhood and sweetness… It is offensive.

“And it’s a clash. There’s a friction there for us as patients, where we’re both being drawn back into our childhood, and being asked to face this very adult world of decisions and surgeries and treatments that will forever alter our bodies, our sense of self, our intimate relationships. It creates a friction that can be very disorienting at a time when it’s so important to be oriented.”

The LGBTQ community, the queer community, we are more comfortable, in general, with androgyny. And we’re more comfortable with the idea that a woman’s body doesn’t have to have a vagina. A woman can have a penis. A woman doesn’t necessarily have to have breasts. I feel like we already have those concepts and that vocabulary. I Just wonder how that played out for you. If you’d been living the life of a Stepford wife when you got diagnosed you might have had a very different decision.

“Absolutely. I write in the book that being queer and coming out as queer in my 20s… Just that word is a provocation to think about things differently. To think about bodies differently, to think about sex, gender identity differently. And having been out for about 15 years when I was diagnosed, I had already thought about, how do I embody this — this identity as queer, as lesbian, as a slacker femme.

“How does this work in relationship with my partner who is also a woman? And queer relationships have this joy and beauty in that right off the bat they break the mold of heteronormative femininity and heteronormativity, so you’re you’re already working outside the box.”

You’re already a little gender nonconforming.

“You’re gender nonconforming, yes. And our relationship was gender nonconforming in that way. My partner and I had already had to figure out like, what does this relationship look like? What does it look like to be a same sex couple? What does our intimacy look like? What do our lives look like? We were already working so far outside the normative paradigm.

“Breast cancer, while devastating for all the reasons, it wasn’t layered with that kind of extra complication of, well, if you don’t have breasts then you’re not a woman. If you don’t have breasts and bring those to the bedroom, then you’re not desirable. That wasn’t an extra layer of complexity we had to deal with in our relationship, because we’d already been thinking outside the box for so long. And we have a level of respect and communication for each other that we were able to then take into the cancer diagnosis, that allowed us to have really difficult but productive conversations around, how do we love each other through this? And what does it mean if one of us doesn’t have breasts anymore? And how will we negotiate that?

“I feel lucky in a lot of ways that I was in a queer relationship when I was diagnosed. I feel like a lot of women who are in more normative heterosexual relationships struggle more and it’s hard to add that on top of cancer.”

A. Mathiowetz

Catherine Guthrie

One of the doctors that you saw said radiation is kind of like a breast lift. And it reminded me of all the stupid things that people said to me when I was going through cancer, like, “Hey, it’s like getting a free boob job,” or, “Hey, at least they won’t get saggy now, right?” I just wonder if you had any experiences of people saying boneheaded things like that.

“Oh yeah, that was one of the worst. ‘You know, radiation is going to be like a breast lift.’ That was one of the worst coming from a doctor. You know, people say the darndest things.

“I think I struggled most with the number of women who would come up to me and immediately want to tell me about their sister, their mother-in-law, their best friend who had any type of cancer. You started hearing about these stories, and often the person died at the end of the story. And that was not okay when I’m going through treatment, or I have a bald head, and I’m in the grocery store, and someone sees me and they just want to come up to me and tell me their sad cancer story.

“So I got into the habit of stopping people as soon as they launched into the my-relative-had-cancer story and I would say I don’t mean to be rude, but unless this story has a happy ending, I need you to stop telling it now. And they would get this wide-eyed flustered look and often scurry away. But that is what I needed to do to protect myself.

“And I think it’s okay for cancer patients to know you don’t have to sit there and just be a receptacle for people’s stories or offensive remarks. You don’t need to be rude, but you can stand up for yourself in these small ways, which actually help you later stand up in a big way when it comes to surgeons and doctors. In the small ways, hold that boundary, and say, ‘I can tell you’re trying to connect. For me this is disconnecting. Could you please stop?’ And allowing yourself to be emboldened in that way. I think it’s important especially as women, especially maybe in the south, where we’re taught to smile, nod, be polite. It’s important to start taking those small steps to set boundaries and to protect yourself.”

Well I have to say, not having reconstruction wasn’t presented to me as an option, and I don’t know very many women who had that on their list of things to choose from. I just wonder like how you’re hearing that be received, and what you hope will come from putting it out in the world.

“My hope for putting this out in the world, for writing this book, for titling it ‘Flat,’ is that flat will be given to women as an option alongside the reconstructive options. I always say I’m not anti-reconstruction, I’m pro-information, and you can’t order something if it’s not on the menu.

“And I don’t think going flat is right for everyone. But I think it should be on the menu of options women are presented with. Because it is just as valid of an option as reconstructing. It’s hard to see the things that aren’t given to you as options.

“It puts an added burden on the patient to go out and figure this out, like I did on my own. ‘Oh wait a minute, I’m not liking what I see on the menu. I wonder if I can order off the menu.’ And then to come up with the language for ordering that off-the-menu item. So that is just this additional burden we’re putting on women when we don’t tell them that it is absolutely fine if they don’t want to reconstruct. Or If we don’t tell them you can go flat now, and if in a year, two years, three years you choose to reconstruct, you can do that. too.

“Because what women aren’t told right now — especially young women — is that the reconstructive surgeries are very rarely only one and done. When I was writing a piece about reconstructive surgeries for Oprah magazine last year, of the seven plastic surgeons I interviewed, they said the average reconstruction after breast cancer requires six to seven surgeries. So just let that number sink in for a second. Six or seven surgeries, in the hospital, under the knife under anaesthesia.

“When we’re talking about younger women in particular, a lot of them have small children at home. A lot of them are in the prime of their careers. Again think 6 to 7 surgeries, you’re thinking 6 to 7 recoveries. Many weeks of not being able to lift more than five or 10 pounds. Again, most of the women I know have been diagnosed young and have small children. That means they can’t pick up their babies or their toddlers for weeks — stretching into months if you add additional surgeries. You’re talking about time away from work in the prime of their careers. We’re talking about weeks of sick leave, which a lot of women don’t have.

“All of these things become burdens on women’s lives. And it’s not that it’s a burden that a woman should shirk from, if she is absolutely 100 percent wanting that reconstruction, but she needs that information in order to make good decisions. It kind of goes back to that idea of: Women are adults. We need to know exactly what these surgeries entail so that we can put our lives in order, and when we aren’t given that information we’re treated as children.

 

Laura produces Recut, Curious Louisville, and other audio news stories and podcasts for WFPL.