One recent morning as we snuggled in bed at dawn and watched the peaks above town turn pink, my husband Richard and I talked about one of the things that’s toughest about this journey with his brain cancer: 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 chemotherapy he’s just begun 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, we have a lot of what I think is legitimate hope that he’ll survive this passage with brain cancer. In the two weeks that he’s been taking a 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 improved a good bit.
Not just the fine motor skills, either. 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. He’s able to work on his laptop again, something he hasn’t been able to do in weeks. He helped me plant our tomato starts in the garden, using the watering wand to fill the channels of the walls-o-water, something that requires serious quickness and manual dexterity.
All of which may not seem like much, but when you’re dealing with a significantly impaired right brain, it is big stuff.
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,” creating art and functional objects like the beautiful sink in the photo above, work that offers promise to help heal our often tormented relationship with this unique blue planet.
It’s not easy to hold open these two very different doors as we go about our days–one opening to the end of his life, the other to his life continuing beyond the horizon we can see. That’s part of living with brain cancer, and a poignant reminder that none of us knows what’s ahead. We all want to have time to do the work of our hearts, to use our particular gifts to make the world a better place.
Isn’t that why we write?
Learn from our journey: Don’t waste time. Use your gift well. No excuses!