Brain Cancer: Hitting bottom

Yesterday evening after we got home from Denver, I hit bottom. I got mad at Richard, who was having a bad brain day. I slammed around the house. I hurled a ripe organic tangelo at the refrigerator; it splattered all over the floor in a juicy mess. (Which is how I know the tangelo was ripe.)

I was exhausted, overwhelmed and hurt by Richard’s inability to understand. Did I mention he was having a bad brain day? I knew intellectually that he couldn’t grasp why I was upset, but I wanted him to anyway. No, I needed him to.

He tried, but he was exhausted too, and his brain was not clear.

By the time we got into bed and fell asleep, I was drained. I was sure I’d sleep soundly. And I did–for about two hours. I woke just before midnight. I told myself to go back to sleep, but I couldn’t. 

Finally, I woke Richard and asked if I could lie on his shoulder. He sleepily rolled over, and I cuddled up. And burst into tears. I couldn’t stop crying. I finally went to the bathroom to blow my nose and ended up sitting on the toilet lid, sobbing, keening, groaning and wailing. I’ve never experienced those kinds of sounds coming from my own body before. It felt like I was channeling all the grief of the earth.

Richard padded into the bathroom and laid his hands atop my head. I leaned my head on his warm legs and sobbed until I wrung myself dry. After I blew my nose and washed my face, we went back to bed and snuggled together and exhausted. Finally, we both fell asleep. I woke at dawn, still exhausted.

What happened? It’s not that yesterday’s radiation oncology consult brought bad news. Dr. Chen was helpful, confident that his focused radiation treatments can slow the tumor down, buying us some time. We talked about the clinical trials we’re investigating: a vaccine trial at University of California-San Francisco and another one at Duke University. (Both involve taking live tissue from Richard’s glioblastoma and using the DNA from those cells to make a vaccine to help his immune system shut the tumor down. It’s not clear that Richard would qualify, and we won’t know until we gather what each trial requires from his voluminous medical record, fill out application forms, overnight each package and wait for evaluations.)

Dr. Chen encouraged us to apply. His only caution: time. At the rate Richard’s tumor appears to be growing, he thinks he’s got about a month when he can use the three-day course of intensive radiation productively. After that, the tumor may be too big. So if we’re to get Richard into one of the trials, it has to be soon. If that can’t happen, we’ll go for the radiation first.

“Soon” is not in the vocabulary of medical bureaucracies. After the consult, we spent an hour in the bowels of the VA Hospital obtaining about 150 pages of Richard’s paper record–and then we learned the CD with his scans will have to be mailed to us, and it will take “about a week.” A week is one fourth of Dr. Chen’s month, and after that we still have to get the application packages to the respective institutions and get their evaluations.

No wonder I feel like time is running out. That’s not a metaphor. Richard’s got a recurrent grade 4 brain tumor. His brain is still recovering from the last surgery, more treatment is needed; his tumor is growing. Time is just what we don’t have.

This morning, despite the headache and gritty eyes, I had a glimmer of understanding of what I’m struggling with: letting go of another layer of control. I know intellectually that I can’t make Richard’s brain cancer vanish. But it’s harder to let go of that fiction at the emotional level.

What is clear is this: I’ll do a better job of loving him–and taking care of myself–if I let that need to control go, and accept that I’m not in charge of anything except how I respond to whatever life brings. If it takes a week to get the package together for the clinical trial, that’s what it takes. I’ll use that time to do other things–most importantly, enjoying my honey, bad brain days, good brain days, whatever. His spirit continues to shine brightly, regardless.