Am I the only one who had a Magic 8-Ball whose only answer was “Future unclear, Try again later?”
At least that’s the only one I recall , which is precisely the answer the universe is shouting at me these days.
Since my last post I have received my latest blood tests which show that after a month on the lower dosage of this drug Ibrance my numbers are still creeping up. And I’m doing just what I said I’d do. Next month I’ll go back to the higher dosage and endure the painful side effects while I await information on a new clinical drug trial for immunotherapy – a drug that teaches your own immune system to recognize and kill the cancer cells.
I have a plan, I’ve activated it, I should be fine, right? So why does it feel like I’m standing on the corner of No Answers and What If?
My mother, the greatest catastrophe thinker of all time (really, she missed her calling. She should have gone into disaster preparedness. ) puts a name to what I haven’t been able to.
“What if this cell is drug resistant?” she said. “What if nothing kills it?”
And the knot in my stomach tightens.
I have lunch with a friend whom I learn has a great depth of spiritual knowledge. She believes we’re here to fix something we missed the last go around. She suggests that I’m going through this so that I can tell the story. That through it, others will find their own strength and hope. And the knot releases a while.
This morning I run into my pharmacist while walking my dogs (Yes, Frenchtown is a bit like Mayberry that way.) I ask him about ketosis strips as I contemplate pursuing a Ketosis Diet that calls for fasting intermingled with high protiens, high fats, minimal carbs. The theory goes that all cells consume glucose – including cancer cells. When there’s no glucose, cancer cells can make their own for a while, then rely on glutamine. But healthy cells can survive on ketones – produced by this diet – while cancer cells whither and die of starvation. Yes, it’s a drastic change. And I know this all sounds a bit crazy. Crazy is where you go when you run out of plausible answers.
It’s usually about this time that I start a rant, er, I mean conversation with God, who usually does all the listening while I talk. But this time he sends me a message to help me untie the knot:
“I built you to weather this storm,” he says.
This 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.