At yesterday morning’s oncology consult, Dr. Klein had good news: Richard’s brain MRI was “better.” She couldn’t show us the MRI images because the VA’s computer system was down. But she described improvement on two fronts: the swelling in his right hemisphere had decreased since the April MRIs, a sign that his glioblastoma is less active, and there was “definite improvement” in at least one of the areas of tumor activity–not, she was quick to say, “dramatic improvement,” but enough that both she and the radiologist agreed it was positive.
Great news! Hallelujah! Except…
“Do you want to continue the Avastin?” she asked. “Is your quality of life okay?” Since the chemo seemed to be helping, she said, she’d like to keep him on it “indefinitely.”
Richard said “Yes” almost immediately. I asked him to stop and think a bit before agreeing.
“I don’t have any problem with it,” I said, “I just think you need to think about the impact on your life of the every-two-week infusion schedule.” I reminded him that it means two or three days in Denver every two weeks, then five days after the infusion when his energy goes into what he calls “adrenal fatigue,” leaving him to exhausted to do much more than maintain. That leaves about a week to recover enough to begin thinking about a “normal” life–before the next infusion starts the cycle over again.
He thought, we talked, and he decided to continue with the Avastin. So we went upstairs to the infusion center for his three-hour session in the lounge chair, and then did our city errands and headed home. As we (I) drove over the mountains (finding the gift of swaths of Rocky Mountain iris blooming in South Park, hence the photo above), I thought about continuing the every-two-week Avastin infusion “indefinitely,” and my spirits sank.
How is it that this basically good news can seem so ominous? I didn’t figure it out until about three this morning. What I’m struggling with is that word “indefinitely.” As Richard and I snuggled together in bed, I did my best to articulate my fears.
“We could be looking at continuing the Avastin for the rest of your days,” I said, “which might be months, but we hope will be years.” I said I could see basically three possible outcomes: the Avastin works to extend his life and he can eventually go off it–but then has to recover from its serious long-term effects; the Avastin doesn’t work and the tumor surges again—”it invades my brainstem and my heart stops or I can no longer breathe,” he interjected; or his body quits tolerating it, and then we’re out of options.
“Whichever,” I said, “this every-two-weeks Avastin schedule shapes what may be the rest of our time together.” That’s a sobering realization for me.
What’s sobering is that it’s an in-your-face reminder that his Grade IV brain cancer is considered a terminal disease; most people don’t live more than a year after their diagnosis. “You’ve always been exceptional,” I said, “and I continue to hope you’re exceptional in surviving this, too.”
Life’s a cycle, I started to say, and Richard interjected by spontaneously reciting the passage from Emerson we have framed on our wall: “Our life is an apprenticeship to the truth…” I joined in, “…that around every circle, another can be drawn.” We finished together, “That there is no end in nature, but every end is a beginning.”
“A circle has an endpoint,” he said, “and we have to realize that I may be approaching mine.”‘
“But our circle together will live on in you, and in Molly perhaps,” he said. “And in the people you’ve inspired and in your work,” I added.
By then, we both had tears in our eyes. I reached over and got a tissue for each of us, and we dried eachother’s eyes and snuggled close.
We finally drifted off to sleep again. As we woke in the quiet before dawn, I swear I could feel the “click” as our home planet, Earth, began another round…