2016

Finally: Going Flat in The New York Times

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Last night, a friend emailed me a link to a New York Times story with the note: “Why your book should be published! Now it’s a trend!” I clicked on the link. Held my breath. Then did a double take.

Was this a Halloween trick?

Was I dreaming?

Holy Shit!

Flat Folks Represent!

The story was Roni Caryn Rabin’s smart, thoughtful, carefully constructed piece about women who choose not to reconstruct after breast cancer. As I read the piece, scrolling through the stunning photographs, I braced myself for the worst — insensitive quotes, medical misogyny, and ill-informed rhetoric — but it never materialized.

Instead, Rabin made several points I’ve been making for years:

  • Reconstruction is not as simple as it sounds
  • Sky-high complication rates are breast reconstructions “dirty little secret”
  • Going flat challenges long-held assumptions about femininity, which is why…
  • Many physicians don’t inform women that going flat is an option

I will say more on this soon…but this is a game changer folks! HUZZAH!!!

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.

Gene Tests & Chemotherapy’s “Gray Zone”

Human breast tumor.

Human breast tumor.

I’ll hazard a guess that all cancer patients would skip chemotherapy if they could. The hazy hours in the infusion suite, the body-numbing fatigue, the brain fog, the baldness. And that’s just the short-term effects. Chemo’s toxic legacy can lead to permanent nerve damage, heart failure, and even other cancers, such as leukemia.

So I was heartened to see this week’s headline in the New York Times “Gene Tests Identify Breast Cancer Patients Who Can Skip Chemotherapy, Study Says.”  The reporter, Denise Grady, told of a new study validating the usefulness of genomic tests, gene tests that measure markers of tumor activity and aggressiveness. “The so-called genomic test measures the activity of genes that control the growth and spread of cancer, and can identify women with a low risk of recurrence and therefore little to gain from chemo.”

But my optimism quickly faded. These weren’t new tests. Or a new breakthrough. Instead this was research done on existing genomic tests, the ones that doctors have been using for the past decade. The same type of test performed on both of my breast cancer tumors. While I applaud the much-needed research, I wish the headline felt more apropos.

I was diagnosed with breast cancer twice. First in 2009 at age 38 and again in 2010 at age 39. Because I was under 40, my insurance company covered genomic testing. (I was lucky.) Like the majority of breast cancer patients, my tumor was hormone sensitive and her2 negative, making me an excellent candidate for the tests. My doctors assured me the results of this high-tech gene test would clarify treatment decisions, especially in relation to chemotherapy. Do I or don’t I steep my body in a toxic chemical brew?

For two weeks, I pinned my hopes on this test. How could I not? The results could be a “get-out-of-jail-free card.” One test could save me months of suffering and god only knows what kind of long-term ill effects. Even if the test showed an aggressive tumor at least it would clarify my treatment plan. “Full attack!” Was easier to swallow than a wishy-washy “you may benefit, but you may not.”

My greatest fear, next to death, was making an ill-informed treatment decision I’d come to regret. I clung to my doctor’s promise that the genomic test would mitigate that risk.

And so, when my oncologist gave me the results, I didn’t know how to process his proclamation that my tumor was in the “gray area.” My cancer was neither the most aggressive nor the most innocuous. It was neither the straight-A student nor the drop out. My tumor was a solid C+. If my tumor woke up and decided to apply itself, it could kill me. But chances were good it might nod off in the back of the class.

I got this middle-of-the-road result not once but twice. The first time I skipped the chemo. The second time I signed on with equal parts gusto and terror. But, even with the gene tests, my decision came down to a coin toss.

Am I hopeful that these tests will save tens of thousands of women the pain and suffering that is chemo? Yes. More information is always better than less. Do I think a newspaper headline, even an article, can capture the emotional and scientific complexities of chemo’s risk/benefit analysis? No. With all things, even fancy genetic tests, your milage may vary and mistakes will be made.

3 Steps Before You Walk

Cause marketing is a $2 billion dollar business. That’s a lot of moola. Before you sign on to a charity walk it’s important to know whether your donation will pay for extra balloons at the finish line or something more meaningful.

“When you sponsor someone for a charity walk, you’re really writing three checks — one for the charity, one for the event-management company, and one for the benefits the walker receives, the T-shirt, the massages, and the meals,” said a spokesperson from the American Institute of Philanthropy, a charity watchdog group. “If it’s a very costly event, but you’re happy because you got some great perks, that’s fine. But, if you want to help the cause, you should find out how much will be left over.”

Last month Breast Cancer Action published 4 questions to ask before you walk for breast cancer.

Here are 3 more steps you can take to find out where your donation will go.

Rate of Growth of Cause Marketing from CauseGood

Rate of Growth of Cause Marketing from CauseGood

  1. Find out how much of your contribution will benefit the charity directly. According to the Better Business Bureau’s Wise Giving Alliance, “at least 50 percent should be spent on programs and activities directly related to the organization’s purposes.”
  2. Ask yourself if the charity’s goals are clear? What tangible results have they achieved in the past year, the more specifics the better. Is the charity’s mission specific, like providing wigs to women receiving chemotherapy, or vague, such as eradicating breast cancer.
  3. Ask how successful is the charity in meeting its goals? If a charity spokesperson can’t tell you what they’ve done to forward the cause lately, choose a charity that can.