Chemolog: day 76

Yesterday was one of the worst days yet.

It started out great though. I got up 5:15am and drove to Kezar stadium to do a “track workout”. Actually it was the best morning I’ve had in a long time. I parked in the dark night lit by a few yellow lamps and did a meditation for 15 minutes before getting out of the car. Then I got out and walked to the track. I was the only person there. I was cold so didn’t bother taking off my jacket for the run. I did 2 miles total (including lots of walking), carefully monitoring my heart rate to stay in the 130 range as anything above for more than a minute or so makes me feel like I’m pushing too hard. Then I did a handful of 100 yard striders once I felt warmed up. It feels good to break in my muscles and chest a bit. It’s interesting how strong my body signals are. I can barely pull off 100 yards at a heart rate of 150 beats/min without feeling my chest revolting against my will. So I would pull back to whatever I could easily tolerate. Just doing easy bursts of 50-100 yards felt really liberating.

Something about running in the lanes of the track is just so cathartic. Just being in the moment, in movement, one foot in front of the other while pondering the underlying complexity of our physiology that makes it all possible. I suppose I’ve picked an in-opportune time to get the running bug. I’ll try to continue this practice of morning track workouts if I feel up to it.

But late morning I just crashed. Not only physically but mentally I was a mess. I was moody, hungry, frustrated, tired, hyper-critical and unfocused. My mentality has been rock solid this whole time so I don’t like it when that gets perturbed. I’m fairly certain that the transitions on/off prednisone are a big part of it. I can’t wait to be done with those. In addition I could feel the area around the tumor site acting up. I haven’t felt this since round 2. It was like a little animal scurrying around – very odd and kind of scary. Hard to tell if this was this good or bad. To be honest it felt more like my anxiety acting up than the drugs, but who knows. I ended up crawling into bed early afternoon, then I got up and mindlessly ate some food, then I went back to bed. The kids were playing in the other room and it was a beautiful day outside. I wanted nothing more than to get up and just be with them. I couldn’t help but feel like life was passing me by. But there was nothing I could do about it.

Let’s end on a couple of high notes because today I’m feeling good:

I’m now off prednisone for this round. Below is what the weight gain situation has looked like thus far. I was concerned that round 4 would be worse than round 3 but that hasn’t been the case. Let’s hope it stays this way for the remaining 2 rounds.

Weight gain on prednisone by round. My baseline weight is 144 (dashed black line). Hopefully round 3 was the worst of it.

And I’m of course continuing with the zarxio injections. I’m no longer getting headaches. I’ll brag a bit in saying I’ve achieved professional status as a self-injector! No more flinching or fidgeting. I don’t even get anxious about it. Actually I now look forward to it. Why? I allow myself to look from a new vista onto how I was and how I am now – less fearful. It’s a simple action yet a powerful reminder of progress I’ve made on a very simple and tangible effort. What took me at one point an hour now takes a minute (I now consistently am done in under 60 seconds, from alcohol swab to injection). Lua and Lev have been great motivators too.

I’ll go further in saying that the process of self-administering these shots actually inspires me. They remind me that true progress is possible if only we stick with things and are willing to do honest work to improve.