Regarding my previous post on using doublethink as a coping strategy to compartmentalize thinking about the primary cancer literature, Jing and I have been wrestling with a clinical dilemma for the past couple weeks. You may recall that my oncology team is advocating for a wait-and-see approach: we had two intra-operative MRIs and one post-operative MRI supporting the notion that my surgery was a gross total resection. Now, there’s no guarantee that every last problematic cell was removed, so recurrence is going to be hanging over my head (literally) for years to come. The oncologists’ argument is that many factors are in my favor, including relatively young age, low-grade tumor histology, and available treatment options in case of recurrence, so why subject me to potentially life-long cognitive side effects of radiation, etc, when there is a good chance it will be unnecessary? This is especially true since quarterly MRIs will ensure that anything worrisome will be detected promptly. I appreciate this reasoning. Similarly, if this glioma chooses to continue its indolent existence – and if it continues to exist, we certainly hope it will continue to be indolent – time is on my side. New therapies for glioma are being developed as we speak, and many of the immunotherapies look promising.
We sought out a second opinion from a friend who specializes in pediatric brain tumors, and his argument was that (1) if it regrows, we almost certainly know where it will be, so (2) go ahead and use the best available weapon (radiation) now while the tumor load is at its lowest. I appreciate this argument too, especially because waiting for bad things to happen is hard on the soul, and it requires a great deal of mental discipline to keep a positive outlook. I’m happiest trying to win this battle right now, so I can get on with the rest of the things I want to do in life. As is our way, Jing and I have read a ton of papers on the subject, and there are no obvious data-driven conclusions. Part of the issue is that oncology, and particularly the glioma field, is moving so fast these days, that the literature hasn’t quite caught up with the changing technologies.
Therefore, we asked another close friend (thanks a million, btw) for a connection to yet another glioma expert, which put us in touch with the physician who literally wrote the latest guidelines for treating adult glioma patients. His conclusion was that my risk profile is low, so my doctors’ consensus opinion is entirely appropriate. Which means we’re back to where we started: watchful waiting. This is just fine with me; I can discipline my mind to deal with the uncertainty, and meanwhile, I don’t have to deal with the potentially life-long side effects of some of the other options on the table. It would be wasteful and vulgar to spend all this time and energy getting well, only to land back in rehab for another recovery. Note well: the rehab hospital and the people who work there were great, but I’d just as soon not have to go back.
All this is encouraging. But the bigger point I’m trying to make here is that Jing and I are fortunate to be so deeply immersed in the world of bio-medicine. While we all have to deal with doctors and hospitals at some point in our lives, a major concept I try to pass on to my physiology students at UMSL is that medicine is neither magical nor mysterious. It’s a scientific discipline that’s outrageously complicated, but ultimately comprehensible based on a series of essential principles. Jing and I have the background to read the primary literature and meaningfully participate in our own medical decision-making, and we can be taken seriously when we suggest that our doctors read this month’s issue of Nature Genetics. Equally important, we have friends at several major medical schools in many different disciplines, so we can lean on our social network to get in touch with the subject matter experts we need. As an aside, I should emphasize that having Jing on my side is the biggest advantage of all; no one I’ve met is more relentlessly positive, and simultaneously on top of all the therapeutic details.
Not everyone is so fortunate, which is why I’m delighted to be a part of a valuable bit of scientific outreach to rural communities in Kentucky. My friends and colleagues, Karyn Esser, Jody Clasey, Beth Schroeder, in the Department of Physiology at UK, have been using fitbits and temperature monitors on 4th and 5th graders in Clay County, KY to measure circadian parameters and observe the interaction among time-of-day, nutrition, activity, and other physiological parameters. My role was to develop the software and analytical tools that were used in this program. If you look carefully, you can see a screen shot of some of my work on Karyn’s monitor, right around the 3:35 mark. Please check out the video embedded in the link above; it’s a great story, and emblematic of exactly how universities should interact with their communities.