This was Mayo scan week, after a great trip to Las Vegas for a conference last week. We managed to find time to sit at the Pai Gow tables in the evenings. My dad texted “R u wnnng ny mny?” “Some times,” I replied, truthfully.
I’ve now finished six rounds of immunotherapy/targeted therapy infusions. After the first three rounds, scans showed that there had been possible slight growth of the known lesions in my peritoneum and lung, but there was speculation about “pseudoprogression,” questioning whether the growth was real. Fully expecting that this week we’d start to see the lesions shrinking, instead there’s continued growth of the known lesions, and the appearance of more. Still teeny tiny, not enough to feel or affect my day-to-day life. Since this line of treatment is not as effective as hoped, time to change gears and try something else.
There’s a trial underway at Mayo that’s testing the efficacy of the immunotherapy infusion combined with an oral targeted therapy. I got signed up for that – but won’t know for a couple weeks what treatment I’ll receive. I’ll be randomized into either the infusion + pill group, or only pill. If I wasn’t participating in the trial, the next course of action would be the pill alone (as there isn’t an approved combo yet – hence the trial). This means I’m no longer having any infusions in Minneapolis – if I get into the group that gets infusion + pill, the infusions will happen at Mayo every three weeks, and I’ll take the pills daily from home. Either way, infusion or no, I’ll be going to Mayo every three weeks to check in and get blood work.
My Mayo oncologist doesn’t seem concerned, and made it sound like all of this is just part of the process. Of course, my takeaway was much different, leaning more toward the “I’m fucked” conclusion. I’m reminded to maintain a positive attitude, and avoid stress.
In the 2011 Lars Von Trier movie Melancholia, the premise is a rogue planet is on a crash course for Earth. It’s a really good, really dark movie, showing characters in varying stages of meltdown in the face of impending doom.
I can tell you that it’s extremely difficult to stay positive and avoid stress when there’s a planet (figuratively) coming at me. The idea that stress makes cancer worse does not, in any way, help alleviate the stress. Like at all.
Meanwhile, the idea that I have terminal cancer remains as implausible as the idea that I’m about to collide with a planet. It’s hard to reconcile.
Whatever happens, you won’t be able to say that I fought bravely. More accurate to say I kind of half-assed it, failed at positivity, and used the diagnosis to get out of shit I don’t feel like doing, eat what I want, and do drugs.
We talked to my Minneapolis-based oncologist. We wanted her to tell us how long I would live, which of course she can’t predict. Bob kept asking the question using different words, as if he could trick her into giving a timeline. It would be so good to know! We’re currently operating business as usual – nothing has changed, aside from the cloak of doom. If a change in my status is imminent, we might choose to live differently. Travel? Go visit friends? Experiment with street drugs? I’ve latched on to the idea that I can’t leave Bob with a house full of crap that he’d have to deal with when I’m gone, so I’m feeling stress about getting the house cleaned out, even while knowing this is a crisis of my own creation, i.e., not a crisis.
My AFP (liver cancer tumor marker blood test) was 131 in October 2022, right before liver surgery, then dropped to 3.2 in December 2022, right after my liver surgery. Since then, it’s been creeping up incrementally to 9.3 in March 2023, 12 in June 2023, 83 in October 2023, 185 in January 2024…and is now 626 this week. What the fuck. My Minneapolis oncologist doesn’t think it means much, but given my not-medically-informed observation that 626 > 3.2, it sure seems bad. She assured us that 626 is nowhere near the world AFP record. I don’t know if I believe her.
Walking the dog today, I speculated on which one of us would outlive the other, me vs. Arzu. Arzu will be four in May. The race is on. This is all really weird. In other not really news, I’m now a regular THC seltzer drinker. Not in the daytime, but not ruling it out.