Monday, February 6, 2012

Breast Cancer and Me

by Libby Sternberg

Those who know me well know that I'm not the type to strut my personal struggles out in public. I'm not a fan of using sad but true anecdotes to wring feeling from an audience instead of intellectual understanding.

The ubiquitous pink ribbon. It helped
bring cancer out of the closet.
But the recent brouhaha over the Komen Foundation's defunding of grants to Planned Parenthood has me treading into very personal territory in order to demonstrate my solid connection to the topic at hand.

Specifically, I'm moved to tell my story after seeing a youtube video of a breast cancer survivor telling her tale about what "breast cancer is and is not." Her ultimate conclusion is that breast cancer is not about certain values, and therefore she's disappointed in the Komen Foundation and they can "kiss her ass."

First, congratulations to her on surviving this far, going through the tremendous upheaval, pain and uncertainty of this diagnosis. As to her message to Komen...I'm sorry, but we disagree. Not that I think the Komen Foundation is the best breast cancer organization in the world. But I do think they've been unfairly vilified by Planned Parenthood and her allies. Shame on them.

Before I go on, here are my bona fides on talking on this topic:

My mother died of breast cancer after a four year struggle. The following people in my family have been diagnosed with it, although -- thank God, so far -- none died of it: my maternal grandmother, a maternal aunt, a paternal aunt, a cousin (diagnosed in her thirties), my sister (diagnosed in her forties) and I was diagnosed four years ago. But I don't carry the breast cancer gene. Go figure.

I went through surgery -- tough surgery with lots of wounds and the scars to prove it. Surgery removed my lymph nodes on one side, which means I'm always on the alert for the swelling of lymphodema. I have a handy-dandy elastic sleeve and glove to put on when my arm starts to puff up. It's wonderfully cozy in winter. Not so much in summer.

I went through chemo. Like the woman in the video, I went bald. Unlike some women who go through this process, I was not comfortable with displaying my baldness. I had two wigs, one I called Thelma and one I called Louise. I used to joke that "Thelma" was a firecracker.

Chemo was hard. It forced me to think a lot about what fatigue really is, pressed-to-the-sofa-scared-you-won't-have-the-energy-to-even-get-up-to-use-the-bathroom fatigue.

Chemo wrecked my immune system during one session, sending me to the hospital to be pumped with antibiotics. I received white-blood-cell-shots after that. Those had a side effect all their own -- deep bone pain. Chemo gave me hives. Chemo gave me "chemo brain," where thoughts were muddled. Chemo gave me a metallic taste in my mouth that made me crave foods that would cut through it. Chemo was always preceded by the ingestion of steroids that jacked me up into a "hyper" state. Got a lot done those two days. Chemo, mercifully, was over one day.

And then it was time for radiation. Six weeks being shot with rays Monday through Friday. Six weeks of "sunburn." I was luckier than most. It didn't zap my energy. Or maybe, I was so damn glad to be getting my energy back after the chemo that the radiation's drag didn't bother me so much.

And now it's an estrogen suppressor pill ingested daily. I love my pill, my "precious." But it causes its own set of discomforts.

I could go on with other thoughts -- the care the nurses gave me, the wonder I experienced as the chemo was pumped in me -- the drug came from the bark of the Yew tree. I felt like writing hymns to the Yew tree, the beautiful, magnificent Yew tree -- Oh, Yewbaum, oh, Yewbaum, Wie treu sind deine Blätter!

And radiation -- who thought of this machine? What brilliant minds brought destructive power to bear in such a constructive way? More often than not, I was filled with songs of praise in my heart, grateful these things were available for me. They'd not been so refined in my mother's struggle.

And again the nurses -- with their little ceremonies at the end of each struggle, a dancing frog toy and singing at the end of chemo, a bell-ringing and certificate presentation at the end of radiation. Those silly things meant more to me than walking on stage to receive my two degrees. And I rejoiced with the lucky individuals who experienced them while I was still in the throes of therapy.

So I know breast cancer. I have more than just a passing involvement with it. Me and breast cancer, we're always staring each other down through narrowed eyes.

The Komen Foundation has been an unflagging advocate for breast cancer awareness, research and screenings.  Komen, with its pink ribbons and pink...everything...made it okay to speak of this scourge. Komen brought cancer -- not just breast cancer, I believe, but all cancer -- out of the closet.

Oddly enough, that alone has made a world of difference to me. You see, when my mother was diagnosed in the early 1980s, cancer wasn't something you talked about except in hushed and sorrowful tones. It almost felt as if it were something to be ashamed of. Certainly something to be fiercely afraid of.

And I was afraid. Despite seeing survivors in my family, my mind had been seared with the trauma of my mother's unsuccessful battle with the disease. Komen, along with my family survivors, made me realize I needn't fear the diagnosis. Komen created an atmosphere that said: women beat this; get that mammogram you've been putting off.

Do I always agree with Komen's strategies? Of course not.

But I was appalled at the reaction when they decided not to continue giving money to Planned Parenthood. Yeah, they mucked up the communications part of this act big-time. I'm still unclear on what was behind the decision. Part of it seems to be the fact that PP does few actual mammograms. They do referrals, not the actual screening.

Sounds reasonable to me. Donors to Komen have a right to expect their money going to actual screenings and not referrals.

Part of the reason might be a congressional investigation of PP. I know it will shock PP fans, but there are actual cases of PP chapters not reporting sexual abuse in their zeal to help young women access abortions. Like Komen, Planned Parenthood isn't perfect.

But Planned Parenthood has a lot of allies on the left. And they rallied those troops, ginning up outrage (and probably donations, too, since the outrage industry can always count on money when they light on just the right conflict). Facebook was a sea of comments, most with this theme: Komen cut the PP funding because of some right-wing agenda influencing them. It was all "politics."

Newsflash for PP supporters: pro-life women get breast cancer, too. Maybe Komen's money is better spent on screening programs that all women would be comfortable accessing, not just the sisters from the liberal clubhouse.

What I saw was a swarm of bullies. Or maybe, to use a Godfather analogy, a swarm of enforcers visiting a shopkeeper who wasn't interested in paying "protection money." See what happens when you don't pay up, these "enforcers" seemed to be saying. We make your life miserable.

I won't go so far as to say Planned Parenthood can "kiss my ass." But I will say this: potential big donors to Planned Parenthood should heed this warning: think carefully before you write that check. There might come a day when you don't want to or can't write it. And when that happens, you'll be beaten up in the public square, too. The pro-choice crowd seems to care more about that one issue than any other, certainly more than breast cancer, more even than decent behavior.

Libby Sternberg is a novelist. Her website is here.

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