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Cancerversary

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.

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.

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.