mastectomy

Numbness and Reconstruction

Last week the NYT ran another feature by Roni Caryn Rabin: After Mastectomies, an Unexpected Blow: Numb New Breasts. Roni is one of the few mainstream journalists asking tough questions about breast cancer realities. Last fall, she penned a thought-provoking piece about folks who go flat post-breast cancer. Now, her first follow-up is a well considered examination of a common problem – numbness after reconstruction.

from the NYT

Background: According to the NYT, since 2000 the number of women undergoing breast reconstruction after breast cancer is up 35 percent. In 2015, 106,000 women had reconstruction. Many breast cancer patients report their surgeons did not make it clear that their new breasts would feel numb.

As one can imagine, numbness can be physically and emotionally disorienting for many women. Roni quotes women who’ve injured themselves and not realized it, women who can no longer feel the touch of their children and lovers, and women who feel like they were misinformed when their surgeons told them their breasts would “feel” natural.

Then she digs deeper into that key word: FEEL

Roni spoke to surgeons who explain that when they use the word “feel” in pre-surgery conversations – “as in your new breast will feel natural” – what they mean is that the reconstructed breast(s) will feel natural to other people (aka: men). They aren’t talking about how the breast will feel to the woman herself.*

Doctor-patient convos still centered on what “feels” good to men

Many women don’t realize until after reconstructive surgery that their new breasts will feel numb forever. Some women do regain partial sensation in reconstructed breasts but full sensation is extremely rare due to nerve damage.

My issue is not with numbness. (And, full disclosure, my flat chest has full sensation.) And, as an aside, I’d be curious to know know if flat-chested women are more likely to regain sensation than women who reconstruct.

My point is that plastic surgeons are framing the conversation in terms of what will feel best for men.* And that’s eff-ed up. As I’ve been saying for ages, breast cancer patients can’t make well-informed decisions without accurate and unbiased information. Language that privileges a man’s experience of a woman’s body over her own is biased (to put it mildly).

A woman’s decision to reconstruct is a big one. All reconstructive options require multiple surgeries (even so-called simple implants need to be replaced every 7 to 10 years). Breast reconstructive procedures have unusually high rates of complications, including infection, implant rejection, and lasting pain.

I’m guessing most women would weigh the reconstruction decision differently if they knew in advance their new breasts would feel numb, if their surgeons were able to reframe the conversation around what the new breasts might feel like to the woman herself, not to the man in her life.*

Only when women have complete, accurate, and unbiased information can they make a decision about reconstruction with a clear-eyed expectation about what it will feel like to live in their post-surgical body. Because they are the ones who will be feeling it 24/7 for the rest of their lives.

*In my world, lots of cis-ladies and non-gender-conforming folks touch breasts, but, in the mainstream medical world, the only folks thought to touch women’s breasts are cis-, het-men. 

What’s Missing from the Mastectomy Conversation?

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For Pinktober Self Magazine featured photos from AnaOno Intimates, a company that makes lingerie for women who’ve had “breast cancer-related surgeries.” When the article came across my Facebook feed I clicked because, YES, of course I want to celebrate a company making bras and undies for breast cancer survivors!

But when the first gorgeous, gauzy photo of a woman popped up on my screen my heart sank. Her lovely lingerie-covered breasts looked nothing like my post-mastectomy body. I slowly began to scroll through the five portraits. “Please, please,” I muttered, “please just let one of these women be flat.”

Nope. Each of the five women in the article had a pair of full, lovely, curvy breasts.

Surely, I am not the only breast cancer survivor who is hungry for representations of women proud of their misshapen bodies. Nearly 40 percent of women in the United States who undergo mastectomy for breast cancer choose not to reconstruct, according to a study published in February 2014 in the Journal of Clinical Oncology. That’s 4 in 10 women. Other studies suggest the number is even greater. So where are these women? Are they in the self-congratulatory pages of Self Magazine? No.

Can we please stop rubber stamping homogenous femininity onto the bodies of breast cancer survivors?

The failure to portray a full spectrum of survivorship, in my mind, is not AnaOno’s because the company does have a picture of a flat-chested model on its site. The failure belongs to the magazine. Once more, a major women’s magazine narrowed its vision to see (and show) only women who chose full-on reconstruction. I’m a magazine journalist, I get it. Visibility is good. But I just have one request: can we PLEASE broaden the spectrum of what we make visible?

A Happy Pink Story: The World Wants What It Wants

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In his essay “On Homecomings” for The Atlantic Ta-Nehisi Coates wrote was about his deep longing to move back to his old Brooklyn neighborhood and how his plans were thwarted by celebrity-chasers. About the mining of his privacy for a gossip rag, he wrote: “If the world wants a ‘writer moves to Brooklyn Brownstone,’ story, it’s going to have one no matter your thoughts.”

On the eve of Pinktober, this sentence struck me hard because I’ve had a similar experience with breast cancer.

The world likes a breast cancer survivor with good-as-new breasts, but that is not my story.

I chose not to reconstruct because I didn’t want to sacrifice a back muscle to create what the plastic surgeon referred to as “a breast-shaped mound.” Now, seven years later, I’m not arguing against reconstruction. I believe women need to be fully empowered to make any and all choices about their bodies. But a fully informed choice is predicated on having all the options.

A lot of women take comfort in the happy pink story “no matter your thoughts.” But I can’t help but wonder how many women don’t yearn for a story with an alternative ending. In the weeks after my breast cancer diagnosis, I saw four surgeons and not a one mentioned going flat was an option for me. Going flat isn’t every woman’s choice but it needs to be on the menu.

Like fairytales reimagined with strong girls who don’t need to be saved by a prince, I’m hoping my story about a breast cancer survivor who didn’t need to re-create her breasts to feel whole again, to feel like a woman again, will be a refreshing update to a stale ending.

Pinked

Yesterday, I spoke with a reporter from the Detroit News. She is writing a story about breast cancer awareness month and was interested in talking to folks who are less than tickled pink by the proliferation of pink ribbons. (Who, moi?) I thought I’d blogged forward and backward about this topic, but I was caught a bit off guard by what seems to be the most obvious question of all.

“So, why is pink NOT your color?” she asked.

(Insert forehead-smacking moment here.)

How could I have not written at length about why (exactly) pink is not my color! Okay, loyal readers (all 3 of you) know that I am not a card-carrying member of the rah-rah, breast cancer sisterhood. Hence, maybe the name of my blog is self-explanatory. But I welcomed the chance to answer her question and thought I’d do so here as well. Because, believe it or not, until I was tarred and feathered in pink last February, I thought pink was a swell color.

Let me explain. In those awful two weeks after the “C-bomb” dropped, Mary and I schlepped around shopping for a breast cancer surgeon. My first inkling that  pink was no longer my innocent, cherry, childhood friend was when I entered the first breast surgeon’s waiting room. It was as if a flamingo had just vomited on the place. My eyes stung at the pink upholstery on the chairs, the pink wall-to-wall carpet, and the pink window treatments. The staffs’ outfits matched their surroundings, like lizards that evolve to look like rocks or leaves. Every nurse was peppered with pink-ribbons from her lapel pin to her pink shoelaces. And the pink suffocation didn’t end when you escaped the office, it followed you home, like a virus.

Every time I consulted a breast cancer surgeon, I left with a bag of pink SWAG. I felt as though I’d just attended the breast cancer Oscars–or a birthday party for 5-year-olds. I kid you not, I have a box of breast cancer tchotchies in my linen closet. (Seems like hubris to recycle that breast cancer business—never know when you’re going to need a brochure on metastasis.) Each goody bag revealed various assorted breast cancer bric-a-brac including a pink water bottle to quench my thirst after sitting in the waiting room for hours, pink binders to hold my important medical papers, a pink day planner to help me remember my radiation and chemotherapy appointments, a pink pen to write them down with, and a pink journal in which to record my pinkest of pink thoughts. (Just so you know…I am not making this up.)

Now, just for kicks, imagine a man newly diagnosed with prostate cancer. Picture his doctors and nurses showering him with baby-blue baubles. Maybe his gift bag includes a blue beer cozy, blue-ribbon-bedazzled sweat socks, and a blue notebook to keep track of his deep man-thoughts about how it feels to lose a part of his masculinity. Imagine the man slinging his blue tote over his shoulder on his way out the door. Let’s stop and ask ourselves: Is this supposed to make the man feel better? Does his possession of a blue-ribbon festooned notebook make him feel welcomed into the “sacred brotherhood” of prostate cancer patients? Did a chipper “survivor” pop into the examination room to hold his hand and shoot him knowing looks while the doctor outlined his surgical options? (Again, I’m not making this up.)

This scenario sounds insane when you put a man in the picture, but this is exactly what happened to me last February, and I’m guessing it happens to thousands of women every year. Granted, some breast cancer patients undoubtedly eat pink ribbons for breakfast, lunch, and dinner and that’s fine, but let’s make some room for those of us who aren’t hungry.

This pink-coating of breast cancer makes me want to scream until I’m pink in the face. What would I yell? Oh, here are a few jewels that come to mind: For starters, I’m an adult, not a fairy princess. I don’t want to join your pink sorority. I have a deadly disease, not a boo-boo you can cover up with a giant pink Band-aid. I don’t want a fucking pink day planner. What I need is a surgeon who will treat me like an intelligent person, a person who needs accurate, concise, no-bullshit information much more than she needs a linen closet overflowing with pink gewgaws.

And while I’m on my pink soapbox, I would add: Don’t use your pinkest, most upbeat voice to tell me that radiation will give me a “virtual breast lift” by tightening the skin around my breast or that reconstruction will give me the “breasts I’ve always wanted”—all expenses paid! And stop waving your pink wand, like I’m 8 instead of 38. Pink is cute. Pink is frilly. Pink is for little girls. But there is nothing cute or frilly about having your breasts carved off and your estrogen levels chemically decimated to the point that your libido is a distant memory and your genitals turn to sandpaper.

Do I want to shroud myself in black? No.

Am I a negative, angry person who wants to simmer about her disease, her brush with mortality, her troubles on Tamoxifen? No.

What I am is a smart, curious, thoughtful person who needs a little pink-free space to wrestle with her breast cancer demons. Because no amount of forced pink smiles, pink walks, and pink banners will undo what cancer has done to my body and my psyche. The hardest part is that I know there are other women out there who feel the same, but I can’t see them or hear them because we are all drowning in an ocean of pink.

Want fries with that?

I’m cranky. Today is the first day of breast cancer awareness month and everywhere I look some asshole is slapping a pink ribbon on their crappy product and calling it charity. At the grocery store yesterday, I saw a bottle of Mike’s Hard Lemonade festooned with a pink ribbon. Really? Does no one care that drinking ups your risk of breast cancer? Yes, one must drink in excess but, honestly, isn’t that the point of making alcohol taste like pink lemonade? Have these people no shame?

Lord help me, it’s going to be a LONG month.

Instead of kvetching about everyone else making a buck, why not start to exploit my own “survivor status.” For instance, my short but snappily illustrated article in this month’s O Magazine is about new legislation aimed at ending the practice of “drive-thru mastectomies.” When my editor tossed me this softball assignment last July, I had to swing. Who better to cover this topic than a gal who detoured through the mastectomy drive-thru lane not once but twice! Who cares that they “straightened up” my story by editing out a mention of Mary or that they inserted a huge error into why I needed to revisit the OR in the first place. ‘Cause, hey, I was only too happy to cash the check. And, after all, it’s only money. Right?