Yesterday morning as we snuggled in bed at dawn and watched the peaks above town turn pink, Richard and I talked about one of the things that’s toughest about this journey: the need to hold open two opposing possibilities for the future.
While we have to be prepared for the worst outcome, for the possibility that the growing tumor in his right brain will end his life in weeks and months, at the same time, we cannot abandon the hope that the course of Avastin infusions will help his naturally strong immune system stop the tumor and his amazingly resilient brain will recover.
We’ve talked about the “what ifs,” as in what if things get worse. When you’ve been diagnosed with a glioblastoma multiforme, a type of tumor known for insinuating its many branches throughout the brain, commandeering the vascular system to fuel what amounts to a hostile takeover, you have to face the worst.
So we’ve discussed end-of-life care. “Maybe I should go to the VA nursing home. I don’t want caring for me to wear you out,” he said.
I swiped the tears from my eyes and took a deep breath. “Thank you. But wouldn’t you rather be here with me? I’d much rather have you at home.” He allowed that he’d rather sleep with me as long as he can. “Well, that’s a relief,” I said tartly. We settled on hospice care at home.
We’ve talked about what he wants to do with his body: “I remember hearing a resident talking about dissecting a brain for the first time,” he said. Then, as tears leaked from his eyes, he continued, “I’ve been a teacher most of my life. I’d like to donate my body to the medical school. I like the idea my death of offering a learning learning experience for someone.”
And, holding each other close, we’ve talked about what it’ll be like to part physically. I reminded him that we’ll never really part: “We’ll live on in each others hearts. We’re part of each other. You’ve shaped who I am, and I think I’ve shaped you too.” I had to get up and get us tissues after that one.
At the same time, and not just because it’s the time of this beautiful new moon, we have a lot of what I think is legitimate hope that he’ll survive this passage with brain cancer. Over the past week, since he’s been taking the steroid to control the swelling in his right brain caused by the tumor, his brain function has not only not gotten worse; it’s actually gradually improved a good bit.
Not just the fine motor skills we hoped would improve as the swelling abated. Yes, he can button his shirts and tie his shoes again–and what a relief that is to a formidably bright and physically strong guy who is not used to being helpless!
He’s also regaining some subtler aspects of brain function eroded by the growing tumor: he’s quicker and more aware. His visual processing still slows him down–sometimes making sense of complex visual stimuli simply eludes him. And he’s still missing things in his left peripheral vision. But today he spent some time on the computer, reading and sorting through emails, something he hasn’t been able to do in weeks. And yesterday, he helped me plant our tomato starts in the garden; after some practice, he was able to use the watering wand to fill the channels of the walls-o-water, something that requires serious quickness and manual dexterity.
He’s been helping with meals again, and hanging out the laundry. All of which may not seem like much, but when you’re dealing with a significantly impaired right brain, it is big stuff. And it’s happening before his Avastin infusions, while the tumor is apparently still growing in his right brain. So it’s stuff his body is doing all on it’s own.
Which is why we’re holding out hope that he will survive this terrible passage, and recover to return to his practice of sculpture, working with native rocks he calls “ambassadors of the earth,” art that offers promise to help heal our often tormented relationship with this unique blue planet.
On a sad note, today brought the news that writing colleague Melissa Walker, whose memoir, Living on Wilderness Time, I reviewed last month, died of a recurrence of breast cancer yesterday. Melissa was an academic, a writer, a crusader for civil rights and environmental issues, a wife and mother, and above all, a lover of wild places. True to her beliefs, she will return to the earth, her body simply wrapped in a quilt her mother gave her and placed in a plain pine box; she’ll be buried in a conservation cemetery in the woods outside Atlanta, Georgia, where she lived with her husband Jerome. Her voice is already missed…