On Wednesday morning, we headed to the city for Richard’s testing, oncology consult, and infusion with Avastin, the chemo drug we hope can slow the glioblastoma fingering throughout his right hemisphere. We spent part of the day helping my dad, and then got the car’s clean-air emissions software updated at the Subaru dealer. (Our Forester is a PZEV vehicle, meaning its tailpipe emissions are almost zero.)
By the time we got to Fisher House, the VA’s house for out-of-town patients and their families, Richard was exhausted. He napped while I read a manuscript. And tried not to worry. For the past couple of weeks, it’s seemed to me that his brain function has been ever-so-gradually slipping: his vision has been getting worse, and he has been slower overall, signs that the tumor is growing.
The next morning, we woke to a dawn striped pink by lines of cloud visible through the blinds. (Those are Richard’s bare feet in the photo above, silhouetted against the dawn sky.) We had to rush to make it across the city in time to breakfast before heading to the medical center for Richard’s oncology appointment.
His oncologist greeted us warmly, but her smile seemed a bit strained. She asked about how things had gone in the month since we saw her last. We talked about the good stuff–he’s been more like his easy-going, empathetic self without dexamethazone, the steroid we would prefer he didn’t have to take (it controls the brain-swelling caused by the tumor activity).
Then we listed about our concerns: his worsening vision, especially the left side; he’s been having more smell/taste “events,” where some food or other triggers a taste or smell that is disturbing; his beautiful singing voice, always strong and sure, is losing melody and key; he seems slower overall.
I was pretty sure what she’d say: he needs to go back on dexamethazone. She did. I asked about other steroids. She said with a touch of sadness that dex is the best one in this case. So he’ll start out with moderate dose and if his symptoms improve, she’ll figure out a maintenance dose.
“Other than that,” she said, “your blood tests look excellent. If you want to continue the Avastin, you’re good to go.” Richard said he did. She nodded.
“Your next brain MRI would come in September,” she said, “but there’s your trip to the Pacific Coast. Are you still going?”
“Absolutely,” I said, “If you still think it’s a good idea.”
She smiled warmly and said, “Yes. Go. Take that time together.”
“Do you want the MRI before or after?” she asked.
Tears filled my eyes. “You know what I prefer–later.” She nodded sympathetically.
“It’s better to know,” said Richard. She looked at me. I wiped my eyes and nodded. She scheduled the MRI for his next appointment, a few days before we leave on our road trip.
“If anything goes wrong on the trip…” I started to ask.
“Head for the biggest nearby VA facililty,” she said. “Tell them he’s my patient. They’ll be able to access his records and contact me.”
She hugged each of us. Richard headed into the hall. I lingered. “Next time, can we talk about what I should expect?” I asked.
“That’s a good idea,” she said. Her eyes sparkled with unshed tears. “We’ll find time for that.” She hugged me again.
Through the two and a half hours in the infusion center, the hour of big-city errands, the three-hour-drive home over the mountains, and the day at home to settle in, I digested the news. We won’t know for sure until we see the scans from his next MRI, but it seems pretty clear: the tumor is growing. The Avastin, the last tool in the cancer kit, isn’t working.
The average lifespan with a glioblastoma is a year. He’s already had that.
Miracles are always possible. I know that because mine is sitting next to me reading Herman Hesse’s novel Siddhartha, a story based on the life of the Buddha.
I treasure the gift of Richard in my life, and I’m determined that whatever the news, our time together will be lighted by love and joy, and infused with the beauty of the community and landscapes around us. That’s all I can do–and it’s a lot.