Summer Update
Hey y’all—it’s been a while. Hard to believe that we’re already in August! For many of us, we feel the end of summer approaching and all the lamentations and regrets and plans to jam-pack the next few weeks that come with that. For my part, while I will grip summer as long as I possibly can, I also love the autumn—I’m fairly sure this Onion article was written about me—so I have no fear about the passing time.
When I last left you, I was still in my two-week inpatient stint at the NIH. I can’t say that I have much else to say about it. It was terrifically boring, not necessarily in a bad way, and I was very ready and very excited to get home, even if just for a few days before the start of my next cycle.
One interesting thing I learned is that the whole inpatient stay is a bit of a concession to the drug companies (AbbVie/Genentech) that are providing one of my drugs (Venetoclax). My doctors believe the two-week stay is overkill, as they have not seen significant complications from the drug. But the drug company, concerned about possible liability when their drug was newly combined with the four others in the trial, said they wouldn’t provide the drug unless the patients were closely monitored during its [slow] introduction. A little negotiation here, a little adjustment to the protocol there, and boom… a two-week stay for all of us on the ViPOR trial. Weird, right? Just in case you thought money and lawyers don’t run modern medicine. 😉
My doctors hope that, based on the very positive data from this trial phase, patients in the future phases won’t need the inpatient stay. So hats off to you, intrepid future MCL patients.
Since the hospital stay, I’ve just been settled into what are now my regular treatment habits. A short visit to the hospital, two days of infusions, two weeks of breakfast drugs (mmm), one week of vacation, rinse and repeat. It’s all just muscle memory now. I feel about 75% normal during the two weeks of treatment, with some good days and bad days, and it’s all very manageable. During the off weeks where I’m not on the drugs, I often feel better than I have for months…and that leads me to wonder if I was feeling some subtle symptoms even before the Ridley Scott-style growth emerged from my abdomen back in May. I think it was easy to chalk up some of the fatigue and “blah”-ness to age, or stress, or the psychological effects of two years of a shitty and politicized pandemic, and no doubt some of that is true too…but I do wonder if I’d also been feeling some early symptoms back then. It’s not terribly productive or helpful to spend too much time pondering that, but it is interesting. Get yourself checked!
As I wrote (dictated) this today, I was walking back from the NIH to the house of the family friends that I’m staying with (GRATITUDE), and feeling great despite the oppressive DC humidity. Tomorrow I start cycle 4 of 6 which means I’m more than halfway through this crazy treatment. After I’m done in October, and assuming I’m part of the lucky 100% of patients that gained a full remission, I’ll have to come back post-treatment at the one month mark, and then every three months for a year, then once a year after that, for tests and scans. It’s all part of the research. I am, after all, a 6-foot-6 bag of meat and scientific trial data.
Great progress all around and now my eyes are pointed to October. I am happy that I’ve been able to enjoy at least some parts of the summer, including spending some time with my family on San Juan Island, visiting a great old friend of mine in NYC where we ate our way through the city, and road tripping to a Wisconsin reunion with Esther’s wonderful family (also where our greyhound chased a herd of deer into the woods), and I’m sure some other minor adventures await us over the next few weeks. I hope your summer has been a great one so far — I’d love to read your stories or see your photos, for real. Until next time…