On Being a Statistic

This post is a copy of an op-ed I submitted to the NY Times, in response to an op-ed they printed today.  I'm in the home stretch of getting the first draft of my book to the publisher, so I haven't written many posts this fall.  And now my next six-month follow-up is upon me.  I fly out on the red-eye to Boston, tonight.  On Thursday, I'll be riding the elevator of Beth Israel Hospital from appointment to appointment.  On Friday I'll be on Cape Cod with my family.  Here, in Alaska, it's glorious fall, hard frost at night, a cold disc of moon bright as a spotlight in the windows, and everywhere, warm discs of leaves spattering the grass, fluttering through the air.  The trees are adorned with gold spangles; they're loud, chattering and vibrant, barely hanging on.  The next big storm will strip the trees bare.  When I return, it will be winter.  

A year ago, I had my last chemo infusion.  One year.  Today, there is so much beauty out my kitchen window -- the maroon leaves of the chokecherry, the red berries of the mountain ash, the sun, the new snow dusting the top of Grace Ridge, the sun -- I can hardly stand it.  

Here is the op-ed:

In two days, I’ll once again be donning a hospital johnny and taking a seat in the mammography waiting room at Beth Israel hospital with a cadre of nervous women.  I’ll be distractedly leafing through a Lucky magazine, listening for my name to be called.  This is no routine mammogram.  In April of 2010, I was diagnosed with early breast cancer. Every six months I return to the hospital for the nerve-wracking regimen of post-breast cancer follow-up – mammogram and ultrasound of my remaining breast, blood work, examinations.  I’m one of those all-too-aware people for whom Breast Cancer Awareness Month is every month.  Follow-up jitters aside, I know I’m lucky to be alive and well.  To be a breast cancer “survivor.”  But I’m something else, too.  I’m a statistic.  Actually, I’m several.

I’m acutely reminded of being a statistic by new recommendations for prostate screening by the U.S. Preventative Services Task Force.  Two years ago, they revamped their guidelines for breast cancer screening too; the timing, for me, was unlucky.  Their justification:  statistics.  I’m here, as a statistic, to say that there are stories behind statistics.  There are lives. 

My first incarnation as a breast cancer statistic resides within the data on risk.  I had no risk factors.  I have no family history.  I’m thin.  I don’t eat meat.  I eat a lot of salmon and fresh vegetables.  I don’t smoke or drink.  I don’t get sick.  I went through menopause early.  Until my diagnosis, at age 44, I didn’t even have a primary care doctor.  Every year, I went to a family planning clinic for my annual exam.  In late fall of 2009, I finally made an appointment for a mammogram.  My clinical breast exam was normal, but my sister, a doctor, kept bugging me:  “You’re supposed to start when you’re forty.  Come on, it’s nothing.”  The night before my mammogram, before bed, I went online to peruse the front page of the New York Times.  There, I spotted a headline about new recommendations regarding mammography put forth by the U.S. Preventative Services Task Force.  Based on the statistics, they concluded that women with no significant risk factors could delay their first mammogram until age 50.   I read the article carefully.  And the next day, I cancelled my mammogram.  The rest, as they say, is history.  A few months later, I found a small lump in my breast.  It was cancer, Stage 2A, and it was aggressive.  I went through 8 months of treatment, and now I’m one year out, and rebuilding my life.

Would that mammogram – or better yet, one at age 40 – have detected the cancer? Saved my breast and lymph nodes?  Saved my body the ordeal of chemotherapy?  Who can say? Do I wish I’d never read the recommendations of the U.S. Preventative Services Task Force that night?  Do I wish I’d had the mammogram?  Unequivocally, yes.

In an Op-Ed on October 11, H. Gilbert Welch, a professor of medicine, has this to say: “Now let’s consider the winners — those who have avoided dying from breast or prostate cancer by getting screened. While there is some debate about whether they really exist, my reading of the data is that they do, but they are few and far between — on the order of less than 1 breast or prostate cancer death averted per 1,000 people screened over 10 years. That’s less than 0.1 percent.”  (The losers, apparently, are those who deal with false positives, not the dead). 

According to the National Cancer Institute, over 200,000 women will be diagnosed with breast cancer this year.  About 40,000 women will die of the disease.  How to contextualize 0.1 percent?  In terms of 200,000 women, it’s 200 mothers, daughters, sisters, best friends, lovers, mates, colleagues, cousins, aunts.  When it’s you, or me, or someone we love, buried in a number, in 0.1%, what does a statistic mean?

The other day, I ran into my friend Mike outside the post office.  Several years ago, when he was in his late thirties, a PSA test discovered he had aggressive prostate cancer.  It was, he was told, an exceedingly rare result.  He was a 1%.  He went through surgery and a long recovery, and now he’s fine.  What does we mean, what do we matter, two ski-loving, Scrabble-playing statistics, hugging in the warm October sun, so damned glad to be alive?