Life in general

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.

Avon’s Charity Walk of Shame

Corporate-sponsored charity walks do a disservice to many women. Look what just arrived in my mailbox…a pinkalicious mailer from Avon guilting women into walking on my behalf. “Will you walk? Or will you walk away?” Brilliant way to push our collective guilt/shame button. Thanks Avon!

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Thanks too for perpetuating misinformation about breast cancer for your company’s benefit. That’s awesome! Surely your savvy marketing team knows that the 1 in 8 stat is misleading. If your mission is to educate women about breast health, why perpetuate bad information? Breast Cancer Action considers the 1-in-8 stat one of the Top 10 Breast Cancer Myths. Here’s what BCA says:

“This much-quoted statistic is an individual’s cumulative risk over an 85-year lifetime. It does not mean that at any given point, 1 of every 8 women has breast cancer. Rather, it means that if all women lived to be 85, one in eight would develop the disease sometime during her life.”

Shame on you Avon for using this misleading statistic to scare women into contributing to your cause. 

 

On Pink Washing: Dear Food Makers, Please Shut Up.

Pink washing health claims on food packaging are obnoxious. They are confusing, misleading, and (often) inaccurate. As a science journalist, I know that 99.9 percent of these health claims are hogwash, and I find it morally offensive that food marketers prey on people’s fear of disease to sell products. I actively avoid buying products with health claims or pink washing. So, imagine my surprise when I opened a new container of miso and found a giant health claim lurking beneath the lid. Sneak attack!

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Nothing kills my appetite more than a pink-ribbonly reminder of my mortality. Thanks Mr. Miso!

I will give them a tiny prop for including a study citation, even though its presence could be construed as manipulative because it adds superficial credence to the claim. So, I walked my anger right over to PubMed and looked up the study. A tiny part of me (the sucker part) hoped the health claim was true. But a much bigger part of me (the pompous part) wanted to feel “right” and, therefore, justified in my anger. Guess which part won?

Here’s the miso dish: In 1990, 21,000 Japanese women filled out diet questionnaires that included a question about miso soup. (BTW: Diet questionnaires are notoriously inaccurate because, really, who can remember what they ate for breakfast? Much less for breakfast six weeks ago?) Researchers followed the women for nine years and charted how many got breast cancer. In the end, fewer cases of BC popped up in those women who (reportedly) ate 3+ bowls of miso soup a day.

A few caveats: the study’s small sample size means its accuracy is suspect; miso’s magic only applied to postmenopausal women (bummer for me); I live in the West, not Japan, so my confounding factors are enormous; and, finally, who eats 3 bowls of miso soup a day for years on end? Not me.

When it comes to health claims, even those with citations, don’t be a sucker. Health claims on food packages are nothing but savvy marketing with a scientific sheen. I can only hope that, if we all vote with our dollars, food makers will get the message that we don’t want our fears manipulated at the grocery store.

Hormone Blockers: Why 25 percent of us ditch the drugs

Hormone blockers and you.

Last month, researchers at the University of Michigan seemed genuinely surprised when they discovered that 1 in 4 women given hormone-blocking drugs as a continuation of  breast cancer treatment either stopped taking the drugs or never started.

But, if you’ve ever taken these drugs, this news comes as no surprise.

Living with the side effects of these drugs can be disabling. I can’t speak for anyone else and many of my friends tolerate these drugs, especially Tamoxifen (the most common first-line therapy) pretty well.

But I count myself among the 25 percent.

In the past 3 years, I gave each of these drugs a fair shake. For the first year, I dutifully swallowed Tamoxifen every day and took solace in the fact that it was “proven” to lower my odds of recurrence by 50 percent. But I stopped cold turkey when my breast cancer came back. No one told me that some women “fail” on Tamoxifen and that no one can tell if it’s really working until it’s too late. Dang. For a drug that’s been around since the 1970s, you’d think someone would work out that little kink.

After breast cancer #2, I diligently worked my way through all three second-tier drugs (the aromatase inhibitors Arimidex, Femara, and Aromasin) as well as Lupron, the hard-core ovarian-suppressant. I’m hesitant to list the number and severity of my side effects because I don’t want to discourage anyone. But suffice it to say I was unable to live in a way that made life worth living. And, yes, I do want to live very much…but at what cost?

The side effects that derailed the women in the Michigan study included hot flashes, vaginal dryness, and joint pain. Check. Check. And check. The authors noted that those women who had the most angst about recurrence were more the most compliant. “Greater fear [equalled] greater adherence,” says the medical oncologist who treats breast cancer patients at UM. The beauty of this quote is how conflicted she seems about the fact that the women who are scared shitless make the best patients. Of course, that sounds bad so she continues…”we don’t want our patients living under a cloud of fear, so we need to develop creative ways to both reassure and motivate them.”

Here’s the problem lady: women don’t need your creativity or your reassurance…we need better drugs and we need them NOW. Stat. We also need breast cancer specialists to pick up the clue phone and start shouldering some of the responsibility for their non-compliant patients.

For instance, when I called my breast cancer oncologist worried as hell that my joints were double their normal size and too painful to move, his nurse called me back and said “it couldn’t be the hormone therapy.” That “it sounds like arthritis. You should call a rheumatologist.” Really?

Stunned by the brush-off, (here’s where I should mention that my oncologist was the president of the f**ing American Society of Clinical Oncology), so I’m pretty sure I’m not the only woman who gets the cold shoulder, I used my fat, painful fingers to find a handful of peer-reviewed studies from top-tier medical journals describing the direct link between the drugs I was on and severe joint paint, primarily in premenopausal women (like me). I sent him links to the medical literature. And then I fired him.

I hired a new breast oncologist. She’s a Harvard-trained MD, PhD at a top Boston cancer center who specializes in treating younger women with breast cancer. She listened. She shared her thoughts. She treated me like a capable adult. Together we tried a few more drug combinations. And, after talking with her about my fears, my anxieties, and my side effects, she gave me her blessing to join the 25 percent club because, as she says, “I don’t want to save your life if it’s going to be a miserable one.”

And that’s what we should be talking about.

 

What The Cluck?

Holy crap. I thought pink washing had hit rock bottom, but cause marketers have one-upped themselves with a new pinkwashing campaign linking Kentucky Fried Chicken to the Susan G. Komen Foundation.

KFC’s campaign, called Buckets for the Cure, donates 50 cents to the Komen Foundation for every pink bucket “purchased by restaurant operators” between April 5th and May 30th, 2010. In an effort to raise $8 million in six weeks, according to Komen’s web site, “The lids of these special pink buckets will have a call to action to get involved. Names of breast cancer survivors and those who have lost their battle with breast cancer will be listed on the sides of the bucket.”

The same bucket that packs up to 2,400 calories and 160 grams of fat. Hello? Does anyone at Komen care that obesity causes breast cancer? Or are they too busy selling us out to the lowest bidder? Seriously. You can’t make this stuff up. The web site comes complete with a rotating pink bucket of fried chicken plastered with thumbnail-sized pictures of breast cancer survivors. Click on the picture to find out more about these poor saps being manipulated by the marketing geniuses at KFC.

I borrowed my blog headline from the clever folks at Breast Cancer Action who’ve skewered breast cancer marketers for years with their “think before you pink” campaign. The non-profit’s web site notes that Buckets for the Cure is “especially egregious because KFC, like most fast food chains, is overwhelmingly present in communities that have poor health outcomes.”  Click here to visit Breast Cancer Action’s web site and send KFC and Susan G. Komen an email telling them where they can stuff their bucket.