Chemolog: day 58

My weight is back to normal. I dropped 6 lbs overnight on Monday, then another 4 lbs on Tuesday. Easy come, easy go. I feel back to “normal”. Feels like a (small but meaningful) win to be able to predict my weight flux and the underlying cause. Data tames anxiety.

I’ve also finished this round of 5 self-injections. I’m happy to say that I haven’t had the headaches I suffered last time. I was really anxious about that. In terms of the psychological hangups of doing the injections I’ve turned a corner on this one. The visualizations I mentioned the other day were very helpful (and are a super practice anyway, especially for any physical/skill-based effort you’re undertaking, e.g., a tennis serve, bouldering route, surfing). But I think I’m now past the need for it in this context. For this particular skill the value of that practice was to serve as a scaffold to help build the underlying mental structure needed to prep me for the task. I’ve now removed that scaffold. For 3 days in a row I managed to do it quickly with minimal anxiety. Feels great to have mastered this one. Actually of all the support I’ve gotten from friends/family on this piece, I think my (not yet) 2 year old Lua is the one that got me over the edge. She walked into the room as I was prepping a few days ago. So I started babbling with her as one does with toddlers: zippy (we call her that, short for Tzipora) want to see daddy get better? I’m going to inject myself with the big needle…wanna see? here let’s do it together…ready? Boom! Definitely the fastest one yet. Less than a minute; thought is the enemy! So that’s how I do it now. My new practice is to incant a magic “fuck you“, then stick.

I’ve been sleeping 12 hours the past few days, laying in bed somewhat restless but too fatigued to get up circa 7pm. My fatigue levels tend to steadily accrue in the preceding hours, starting mid-afternoon.

In anticipation of this issue I bought some board games. This equates with roughly the level of coherence/energy I have at night to spend quality time with the boys. Two nights ago I made the mistake of promising we would play but I ended up too tired when the time came, despite promising. I felt really bad about that – if there’s one thing I can’t stand it’s breaking promises. Lesson learned; I now caveat everything with an, if daddy feels up for it. Anyway last night we finally played Battleship. Saul loves it! He even won his first game (though I’m pretty sure his winning in fewer than 50 shots with a >60% hit-rate is cause for suspicion). It’s already provided a nice opportunity to discuss bragging and cheating (the problems with, NOT the merits of). I’m not sure I can think of a recent $14 better spent. And I haven’t had this much fun since building rockets a few months back (that’ll be a separate post). I’m always on the lookout for cool shared activities.

Now that I’m on day 7 of the 3 week cycle I’m doing what I can to stay strong. I managed a few jogs and rediscovered glen canyon near my place which has fairly recently been re-landscaped and looks great. I’ve been doing some meditation there in the middle of my jog – a very convenient way to convince myself I’m being efficient, 2 for 1 – though to be honest I’m mostly catching my damned breath!

Meantime I’ve been super fussy about food. I’ve been an off and on pescatarian for years, but not eating meat has always been an ethical/rational decision vs. one of listening to my body (I tend to feel better, stronger when I eat meat). But in the past couple of days, and for the first time this treatment, I just couldn’t eat meat. The very idea of it disgusts me. Recall a few days ago I binged on hot dogs. I’m all over the place! My fussiness and unpredictability from one day to the next is maddening. On Monday, for 3 consecutive meals all I could manage was tomatoes that my neighbor Phyllis gave me + olive oil/salt/pepper + sauerkraut on top. I then literally licked the plate like a cat to get more calories from the olive oil. And that night I ate raw collard greens torn from the stem with frozen mango and popcorn while laid up on the sofa reading a book. Yesterday I ate pita and a tub of hummus for lunch. If I wasn’t going through chemo your guess that I was an eccentric 85 year old man living solo would be spot on. It’s amazing I haven’t wasted away entirely.

So I’m doing what I can to force food down though protein has been especially challenging. My plan to address this is I’m going to make a concerted effort to start cooking; hard enough for me to understand what I want to eat, let alone inflict my fickleness onto those around me! The other day I started binge watching chefs table, which I’ve found to be really inspiring (which is saying a lot given my gustatory challenges. I’ve always joked that if armageddon comes I’ll survive against the foodies because I’m so utilitarian when it comes to eating: energy in, energy out – feed the machine). Anyway maybe I’ll join their ranks as this attitude of mine threatens to vanquish me in this personal armageddon. I’ve now gone through a bunch of my dusty cookbooks to find recipes that seem appetizing – I’ve taken up a full notebook page containing 30 that look good. I resolve to try each one. My strategy is to start cooking mid-afternoon before my energy levels dip too far below functional. I think the error I’ve been making is waiting until evening to prepare anything and by then it’s too late – I’m not capable. And actually friends have been incredible, dropping off food at my doorstep more days than not – if not for that I probably would have skipped dinner entirely (if you’re reading this THANK YOU!). These meals have been a salvation.

Historically days 7-12 tend to be the most challenging so let’s see how the next few days go.

Saul learns battleship