Did you read Peggy Orenstein’s piece in last week’s New York Time’s Magazine? The Feel-Good War on Breast Cancer. Seriously, read it. I know it’s long. It needs to be. Come back after you read and we’ll discuss. I’ll be here.
And about the bus…we’ll get there.
So Orenstein says, far more eloquently than I, something we’ve been talking about for a while now. It’s about Komen, it’s about pink culture, it’s about the ridiculous things we do “for the cure,” and it’s about the reality of breast cancer.
Orenstein’s story is stunningly similar to my own. Both diagnosed on a baseline mammogram at 35. Ours were both the lives “officially not worth saving.” We both underwent treatment and thought we had it in the bag. We both faced recurrence. Hers was local, I was less lucky. We are both still here to tell the story. We are both shouting it from the rooftops.
Peggy’s article is chock full of really important information, and there were a few standouts for me. You’ve heard me rant against Komen’s perpetual need to sprinkle pink sugar over this disease. You know the “mammograms save lives” crap is complete bullshit. You know how I feel about the distribution of research dollars vs. more “awareness” funding. We’ve talked about issues of over-treatment (more on that next week…tragic story). Like me, you know that 5-year survival rates distort our perceptions and that despite all our “advances” death rates have hardly changed.
That said, Peggy hit on some topics I haven’t addressed. I loved her discussion about what all this pink awareness means for girls. How this impacts the daughters of survivors I leave to the wise and insightful AnneMarie. But I have often wondered what it means as girls come of age. Just as they should be opening up to their sexuality, finding new pleasure in their bodies, they are forced to stare pink in the face. Breasts, both pleasurable and eventually nurturing, have become about death – or at least the threat thereof. I thought MY generation had mixed messages about sexuality. Oy!
But about that bus…
There is a focus on vaccine research. Think of ALL the women who will be spared ever having to dance this dance if we can just come up with a vaccine, right?
Here’s the thing. If we don’t know what causes cancer, what are we vaccinating against?
(OK, let’s not ask the HARD questions. Hard questions are very pink, are they?)
Orenstein quotes Danny Welch, chairman of the Department of Cancer Biology at the University of Kansas Cancer Center. He’s clear. Speaking of vaccine research, Welch says, “I’d prefer to prevent it too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”
He’s “dead on balls accurate” as they say in My Cousin Vinny.
According to data from 2009 (MBCN), there are about 150,000 of us living with metastatic breast cancer.
So I’m going to try to be clear.
VACCINES ARE FINE. It would be a wonderful way to get rid of this dreaded disease
VACCINES ARE FUND-ABLE. Who wouldn’t want to give money to prevent themselves from getting breast cancer. (Scare me enough and I’ll fork it over!)
VACCINES ARE ELUSIVE. I know, it’s easy to believe. Yet it’s very hard to deliver.
But hear what you’re telling me when you focus on vaccines to the exclusion of metastatic breast cancer research:
Rather than prevent death from cancer, I’d like to make sure I don’t get it.
The chance you won’t get breast cancer, or get it again, is what matters. Sorry you will probably die from it.
You’re expendable; this is about me.
There are organizations that want to feed us pink. Others seek to confuse “preventing metastatic breast cancer” with preventing death from breast cancer. We’re smarter than that. We know they are about helping everyone BUT the 150,000 of us who have, essentially, been thrown under the bus.
Here’s the good news: I’m stuck under this bus with some pretty awesome women. We are strong, we are clear, we are passionate, and we don’t care about the rules.