One year ago, turmoil defined my life and my work. The Komen implosion was in progress and I kept the heat on, knowing that people were finally listening. Wherever people were talking about their opinion of Planned Parenthood, I jumped in with the statistics about Komen’s funds — less than 20% going to research.
My elevator speech – How can an organization claim to be for the cure when so little money is allocated to research? Education and support are great, but they don’t cure cancer.
And always, always I gave props to Rachel at Cancer Culture Chronicles, who laid it out so nicely in a series of posts. Before cancer, she was a public accountant; well qualified to delve into financial reports.
I met Rachel in 2010 online, when she commented on my Uneasy Pink post about a pink ribbon garbage can. Still pretty new to blogging, I was ecstatic to make a connection. I thought her name was Anna then, as she had been using a pseudonym. I was privy to her real name shortly after our meeting, but she came public with it in one of my favorite pieces of writing ever.
Rachel had been diagnosed in her early 30s. She was an example of a woman who did it all according to the plan – she found her lump via self-detection, pushed her doctors for tests, and was diagnosed with an early stage cancer that had an excellent prognosis. She was treated and went on. But it returned locally. Then as Stage IV. In fact, it defied the doctor’s understanding, popping up in atypical areas of her body.
As Komen’s problems were spreading uncontrollably last winter, so was Rachel’s cancer. Hospitalized for migraine pain, the doctors eventually determined that cancer had spread to her spinal cord fluid. I wanted to revel in the schadenfreude of Komen’s meltdown with her; to hear her say, “The Emperor has no clothes!” Instead, I was getting dimmer and dimmer reports about her health. A friend asked me on a Saturday what I thought was going on, and I told her that as much as I hated to say it, I thought Rachel would not leave the hospital. Then on Sunday, while I was at Mass, I got a text from Rachel’s husband — she was conscious, eating, and had moved to a private room. I was thrilled, and still making plans to scoot out of town to visit her in the next day or so. I thought it might be goodbye, but hoped it would be an atta boy. Or something.
Then Monday, February 6, 2012, I came home from exercise class and checked Facebook. There it was. She had died.
I have since disconnected from much of the cancer community. There is a part of me that remains in a bitter reality: the pink ribbon take-down was folly. Didn’t save Rachel, or anyone else.
But my change in direction is more than that. Yes, Rachel died of cancer. But before she did, she lived a pretty awesome life. She was funny, smart, and kind. One of the wittiest people I know, she had the ability to make me laugh and cringe at once. Before cancer made her world shrink, she lived. Globally and with passion.
Last night I sat down to write this post and obsessively checked Facebook. Some of my friends were having a ridiculous conversation about nothing much at all and it made me laugh. I jumped in, the conversation went on and an hour later I was laughing so hard I couldn’t breathe. My kids were actually scared there was something wrong.
I’m the first person to take an extra serving of guilt, so I tried really hard to make myself feel like a jerk for crying tears of laughter instead of grief.
But I can’t.
Another reason I’ve disconnected from the cancer-world is the heavy weight of it all, constantly pulling me into darkness. Don’t get me wrong: there is a lot of darkness with cancer. There are no shortcuts and I never shy away from going through the heart of it.
I can’t stay there, though. The discussions seem to always return to mortality and morbidity, and without a doubt there are people like Rachel who can’t choose to walk away from it. If I stay there, though, it doesn’t help Rachel or anyone else dying from an awful disease. In my observation, it is dangerous game that becomes pathological — how I feel about it becomes the singular focus. Not the situation itself. I do not think that Rachel’s legacy, or mine for that matter, ought to be how affected I am by life’s tragedies. I refuse to squander the very thing that Rachel worked so hard to keep. She wanted to end cancer. Her cancer. Everyone’s cancer.
And to bastardize that bastard Barry Goldwater, advocacy in defense of ending cancer is no vice.
Neither is laughter. I am a lucky gal for having such great friends who can make me laugh my way into something like an asthma-attack. For having kids who care enough to be scared by it. For having this life, 4 1/2 years past my cancer diagnosis.
Honoring life is, to me, a far better tribute than dwelling on the end of it.