Brain cancer: Learning (again) to dance with the wind

Thursday, June 9th, 2011

This morning we were in the VA Medical Center in Denver for Richard's oncology consult, followed by his third infusion of Avastin, a chemotherapy drug that aims to slow the growth of the aggressive glioblastoma currently colonizing his right brain. Tonight we're home in our own comfy house in our small valley in the rain shadow of the tallest stretch of peaks in the Rocky Mountains.

Kenoshapassaspens
In between was yet another learning experience, another "aha!" moment, the sort of thing where you see a familiar view anew, like looking at the spring-green aspen trees in the photo above and realizing that beyond them is a whole other layer of the picture, those snow-splotched peaks in the distance.

This morning's "seeing anew" realization was about the value of bending rather than breaking. One of the things I realized a long time ago about living with any chronic illness--whether it's Fibromyalgia or Lupus or AIDs or brain cancer--is that life's a whole lot easier if you sway to the "wind" of the illness.

Which does not by any means imply giving up. It's critical to "elder" the illness in every way you can, using all the tools you have in various wellness traditions to keep it manageable. It's also critical to know when to be flexible. A chronic illness is like the wind that inhabits the valley we live in, a daily force that shapes the landscape and all who live here. Resistance makes you hard and brittle, breakable; while learning to bend, to dance with its currents, gives you strength and endurance.

Learning flexibility and dancing to the rhythm of the wind of any illness is not easy. It requires frequent attention and adjustment. It's a daily practice of wellness, a path involving listening to your body, attending to what it's saying, listening to the medicines and wellness practices and attending to what they're doing, and yes, listening to the illness. All that listening and attending is like yoga; a practice that makes you limber and flexible, responsive to the rhythms of body and health.

What brought this dance of illness to to mind was this morning's consult with Dr. Klein, Richard's oncologist. One of the reasons I love her is that a consult with her is actually a consultation: She asks questions, we both respond, and she listens before deciding what to do. She asks what we're concerned about, and considers our concerns in her treatment decisions.

RandM

This morning, her first concern was knowing how Richard is doing. He and I agreed that even though he still experiences some confusion, his brain seems to be recovering gradually, day by day. (There he is using that recovering brain in a Daddy-daughter moment when Molly was visiting, he on his laptop, she on her iPad, both working away.) We brought up one of our concerns: the continuing side effects of the Dexamethazone, the steroid he takes to control brain swelling. She agreed to halve his daily dose, as long as we pay close attention to any signs of brain-swelling: headaches, confusion, loss of function. 

Then I asked what what came next after this, his third infusion. (The original plan was three Avastin infusions on a provional basis to see how it would work.)

"Continue the Avastin infusions," she said.

"For how long?"

She shrugged. "As long as they seem to be helping. We'll see what the next MRI looks like."

I had been imagining that after this infusion we'd get a break, time to settle in at home and get into a routine of "normal" life, time to just be. As she spoke, I realized that I'd been looking at it wrong. This every-two-weeks excursion to Denver for the infusions, a trip which always ends up requiring two nights and the better part of three days, culminating in an entire morning in the infusion center, is "normal" life now. This is our new rhythm. I just need to adjust my dance to go with it.

Oh.

Through the hours at the infusion center this morning, while Richard snoozed and the chemo drug dripped into his veins, I thought about what this "normal" means, about how to flex my life, my writing, my routine, to this particular dance of the wind of his brain cancer. It means planning the every-two-wees trips to the VA in a way that accommodates my needs too. Aha! I'm not entirely sure how that looks, but I'm going to let that realization lay in my mind. I'll report back about what I see.