Thursday was the big medical day this week. I had an MRI of my brain at Mass Eye and Ear, and then went over to Mass General to have my right lung drained.
The MRI was uneventful but I always forget how incredibly LOUD the MRI machine is when I stick my head in it. They let me put in the earplugs this time (in October they put them in for me and didn’t do a great job). They also offer music in the form of headphones connected to Spotify that go over the earplugs. I chose something mellow–Nils Frahm “Music for Animals.” To even be audible they cranks the headphones so I heard the album as I’d never heard it before–distorted to hell. And then when the MRI was doing its thing, the MRI’s sound obliterated the music. The effect was unintentionally hilarious at first until I got used to it. I get that lots of people get claustrophobic in MRI machines and if this helps them, good. But for me, next time, I’ll skip the music. By the end of the half hour of scans, I was dozing off as usual. I think it might have been faster without the music.
The visit to interventional pulmonology was also uneventful. I had been feeling tightness on my right side for some time, and the CT scan last week confirmed some fluid on that side, so they gave me an appointment. This is the opposite side from where I had the Pleurx, which means it hadn’t been drained since they removed the rather large drain in mid-October when I was in the hospital. So two months? Anyway, I dropped my dilaudid before the procedure, they went in, and pulled out 1.6 litres of liquid. It looked very different from October: no redness, and no visible cells. I don’t know if that means anything, but they were going to send some to the lab for evaluation. The left side, where the Pleurx was, did not have enough fluid to drain, which is a good sign. I went home good and stoned.
That evening after dinner I had my first cyclical vomiting episode in at least a couple weeks. Not fun, and it makes me wonder if it’s somehow the combination of my cancer drugs and the opiates that really get it going.
Yesterday, I felt a lot better. I have been doing well in PT but haven’t really pushed it on walking, so I decided to run an actual errand and walk to Walgreens to pick up my prescriptions. It was totally uneventful, and with the extra lung capacity, not difficult. I still walked slowly and deliberately (and with my oxygen tank in tow). But it was nice to prove to myself that I could do that. Carrie accompanied me, but I could have easily done it on my own. I also got frisky and made a stir fry for dinner, which was tasty, but ran me right out of spoons. One should probably rest the day after surgery. I’m pretty tired today.
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“Enough” Protein; Cheese
Yesterday I also had a consult with a dietician in the cancer center. This was, in my opinion, a mistaken referral, but I took it just in case cancer center dieticians had special expertise or could give me experience from other patients. I had questions about two things:
- The mystery “cyclical” vomiting.
- What to do if I overdo it at a meal. This isn’t much of an issue at home, but I’ve run into a couple cases at dinner parties where the food I was eating was richer than I anticipated. My appetite and, more importantly, my ability to eat are severely curtailed. It’s not exactly like all the new weight loss drugs but the effects are similar. I can’t eat a ton of food at a time and I don’t have much of an appetite (there are occasional days where I do crave a snack or something). In fact, I take a motility drug before each meal to insure that I actually digest it.
As it turns out I was right and the dietician had no special insights into either question. But of course then we had to have the usual dietician conversations: what do I eat in a normal day, and once they learn I am vegetarian going on vegan, am I getting enough protein? The protein question is a household joke because Americans appear obsessed with it, and I’ve now had two students who wrote dissertations that covered how national meat and dairy industries influenced federal eating guidelines — Jess Mudry and Elyse Amend. It’s hard for me not to hear echoes of meat industry lobbying when people talk to me about protein. For instance, current US guidelines suggest .8 grams per KG of body weight; the World Health Organization recommends .66 g per KG of body weight. I don’t think those quantitative differences are because Americans are bigger or exert themselves more.
At the same time, there’s some evidence that cancer patients should have extra protein (and extra sleep/rest and and and) to help the body fight disease. So while I don’t think I can physically hit the 100g per day of protein (!!!!!) the dietician recommended (!!!!), I’m going to make an effort since I otherwise have so little control over other aspects of my disease.
Part of the game plan here is handing in my “shitty vegan” business card. Among its many side effects, lenvantinib made me completely lactose intolerant to the point where lactase couldn’t even help. So I wound up mostly vegan apart from butter and yogurt. Dabrafenib and trametinib do not seem to have that effect, and early tests suggest that at least with lactase, I can digest cow cheese in moderation with no ill effects. So it’s back in my diet. I missed cheese! A small bit of good news. (I will not be handing in the vegetarian card–I identify with animal flesh, so I can’t eat it.). I’ve also succumbed to having lots of smoothies with (not totally disgusting but not exactly tasty) protein powder in them, and other such strategies.
The Wait
I’m currently in one of the toughest psychological phases of cancer treatment, which is the wait between having had tests and getting their results. My Montreal therapist actually told me to practice denial as there’s no other good strategy. So I’ll be trying hard to entertain myself until Tuesday morning, when we get the results and I find out how my treatment is going. Or maybe they will be inconclusive. We shall see. I will report back mid-week next week once I know something and have processed it a little.
Symptom/Side-Effect Report
A new side-effect popped up this week, though it hasn’t quite hit the 1-week mark, which is my test for “is this a real side effect or just a temporary thing my body is doing?” Still, I’ll report it–foot pain. It’s like there’s a bruise on my feet right above my heels. It doesn’t bother me if I’m wearing shoes, sandals, or slippers, but if I’m walking around barefoot or stocking-foot, I feel it. Foot pain is on the list of side-effects. But I’d call it minor for now.