Knowing how the story ends doesn’t untie the knot in my stomach

I will prevailThis is a story that starts with an ending. The one I’ve chosen is that I will prevail, cancer will not defeat me.
That’s the thought that grounded me as I gripped the steering wheel in the hospital parking lot last week coming out of an appointment where my doctor rattled me.
See, I’ve started this new drug called Ibrance. My first month’s results were astounding, but with it came bone-shattering pain. So my doctor and I agreed we’d dial back the dosage, and while we were at it, I’d take a break so that I could time the start of the drug with the rest of the cocktail I’m on. As far as I was concerned, it was a tacit agreement that my numbers would likely go up that month, but we had such a game-changer that it was OK to take a loss because there was a long season ahead and we had a great shot of winning the series, to use a baseball analogy.
So wasn’t I floored when I went in last week and my numbers were up. But suddenly my doctor was talking about nixing the drug, opting to bring in the brute squad – IV toxic chemo. The kind of stuff that makes you nauseous and tired, that over the long haul can cause leukemia and scar your lungs and make your nails brittle or stop growing. And I’d be on it for the foreseeable future.
“It seems to be well tolerated,” he said.
I remind him I’ve been off the Ibrance for three weeks, these numbers were to be expected.
“Can’t we just give it a chance?”I implore.
“Oh yeah,” he said. “This is just if these numbers keep going in this direction.”
Our visit is short. Less than five minutes, which makes it hard to think quickly enough to make my case. Hard for me to even comprehend what he’s saying…or what he’s forgotten.
That he’s forgotten story line. But I haven’t. And that’s what I remind myself on the way home. This drug IS working. I AM healing. My numbers WILL go down. I AM going to be OK – because in the end, everything turns out OK. (Note to self: If it’s not OK, it’s not the end.)
By noon the next day, I have delivered to my doctor a well thought-out letter reminding him about the story line and offering a new plan of attack should we need it. I have found three immunotherapy trials to pursue if, for some strange reason, it turns out he’s right. I ask him to put together a new team – one with a microbiologist, a geneticist, and researchers. It occurs to me that there’s a huge disconnect in the treatment world that keeps people like me from those who may have an answer. I want to talk to them.
I go through the stories I’ve clipped out about promising research and I start Googling names, places, looking for contacts, I put together a spreadsheet. I reach out to friends in the pharmaceutical business and ask them for their contacts.
I sign up for an immunotherapy conference, only to learn I’m on a waiting list.
I have a plan and it’s a good one. I will call to get my blood test results early rather than wait until my next appointment. If the numbers aren’t good, I’ll put it into action. I’ll go back to the higher dose while making calls on the drug trials. I’ll be in one by fall if that’s the way it needs to go.
So why do I have this gnawing in my gut? Why is it that I can’t shake this anxiety? Uncertainty is the name of the game in recurrence. I know that. And numbers…well that’s just a throw of the dice. They’ll go up, they’ll go down.
Why have I let my doctor rattle me? He isn’t the wise and powerful Oz. He’s just a man behind the curtain, one who’s busy and at times forgetful.
And I already know how the story ends.

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3 thoughts on “Knowing how the story ends doesn’t untie the knot in my stomach

  1. charlene mccaw says:

    WOW, Liz…you are so gifted in your written words! We all continue to wait for you to write the end of your story…YOUR way!

  2. Liz, you’ve already won. Keep passing the open windows. Or, if you have to stop, marvel at the view before getting back to the business of living.

  3. keljameson says:

    excellent post Liz. we really need to be our own advocates….

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