My path to the Egress from my brain cancer may be a bit shorter than I’d hoped even a few weeks ago. But I figure I can still complain about the way some human research makes me feel like a rat in a cage.
I’ve known a lot about the value of research in medicine. Even back when I was a college student, I knew more than a few people who used critters to test possibilities. I don’t have a moral objection to research on rats. But people as the target? I can still handle a “yikes.”
I’m a bit worse from glioblastoma than I was a month or so ago. I’d been told at the start that the median survival was about 15 months. Eight months after an operation that removed a large tumor in my brain, an MRI scan shows some of it has returned — about the size of a large grape, or 3 centimeters in diameter, on my left side.
My result looks to be a standard GBM median return and the tumor has probably grown even larger since that scan. It’s usually fast. And I am searching hard and fast right now for one of the newest treatments that I might be able to take soon.
My goals are simple enough that I can be clear even as my mental powers have already slipped to some degree: I want a treatment that has the odds of making me live longer and better — but has odds against me feeling crummy just to keep living longer.
And that is what’s made me think about mice. I’m not going to name researchers here. But a few of them remind me far too much of good critter-aimed researchers. For them, the main questions are: Does a new experiment work on rats? Did the critters live longer? Was there any evidence of problems with the rats’ last days or weeks?
Those are great questions, I guess. I’ve seen reports of human data that had been set up from critter data. But I’ve noticed lots of animal data have never helped people. I can still hope now. Maybe one will help me. Maybe.
Is that a morally acceptable goal for me? Would I pick something like that as a human or even a religious goal? Should I feel like any experiment is good enough for me? I won’t go that far. If that standard is a smidge selfish for me, I will not shift that way.
I know my brain is shifting in ways that are not positive. My ability to grab words is getting harder, though it’s harder when I am talking than when I’m writing. My comprehension remains pretty much normal. I’ve been out riding on my wonderful three-wheel pedaling thing. I’m reluctant to even use the word “tricycle” because it’s a great alternative to a kid’s three-wheeler. It’s fun! Still!
But I’m getting tired fast. My left hand may be vibrating some. And my talking is clearly, to me, and others, not remotely as good as it had been a month ago. So I’m pushing as hard as I can with three top medical experts on GBM.
I’ll decide in a couple of weeks. I have some sense that my pressure on them may be more than most patients push. I’m going to talk to all three docs about what their early and limited data show for every one of their treatments.
My decades of journalism abilities are sticking with me, so far. And so are my own moral and ethical goals.
I hope that I will stay with enough mental strength to make decisions. I’ve had detailed conversations with my wife if my mind loses too much power too fast. That she’s a registered nurse is more than a small strength for me. Marni has already read my columns and has spotted errors in my writing that I’ve been able to correct. So far. Sigh.
In any case, we both understand the practical, clinical and ethical implications that may affect my decisions. It will be tied to our standards for picking my continued treatments.
All humans are mortal. I will be mortal now sooner than later.
Either way, I have set the standards. Inshallah, my doctors will have something for me to try PDQ. And maybe my pushing will mean they will also match my own moral standards. We shall see. We shall see.
Jeffrey Weiss writes the Religion News Service column “My Way to the Egress.” The views expressed in this opinion piece do not necessarily reflect those of RNS.