I’m one week out from the first infusion – that’s 5% of the way to completion, assuming no complications. The first few days were ok, better than expected actually. I slept a full day after getting home from the hospital that first day. On Friday I got up early and actually did a pretty hard workout (my doctor wasn’t pleased but I felt really good). That feeling of strength continued through the weekend. I was able to get up early a few other days and do some light exercise. My appetite was hearty, sleep was mostly fine and no nausea. There were two minor side effects. The first was heartburn/acid reflux, something I never get. So I started taking prilosec to help (hard to tell if it’s working so far). The other is what I can only describe as cramping in my stomach. It’s basically a burning sensation in pockets around my abdomen that I take to be the cancer. While not comfortable there is a satisfaction in being able to feel some tangible effects. The tumor is perceptibly smaller already, which blows my mind. This is further supported by the fact that the constipation I was experiencing (due to the size/location in the abdomen) has improved. This story is corroborated by my doctor who says this is normal/to be expected for the ~10 days post-infusion and that the drugs I’m on have the effect of “liquefying the cancer“. I like that image. Medicine is a marvel.
The elevated energy had a lot to do with the prednisone (it amps you up and increases appetite). On the days after stopping the pills I’ve felt very different. I stopped taking them on Sunday, and starting Monday I’ve basically been in bed sleeping/too weak to get up with a somewhat suppressed appetite. I clawed myself out of bed to take a walk around the corner and write this post, feel normal. I tried taking a walk yesterday and I had to turn around after a few blocks. Imagine your energy during the worst flu you’ve had – that’s my energy for the past 2-3 days.
Everyone told me I’d be watching more tv but that hasn’t been the case so far. With whatever attention I can muster I’ve been doing more reading. And I’ve rebooted my meditation practice in earnest, shooting for 30 minutes daily. I’ve started re-attending a group on Sunday nights that meets for 2 hours. That’s felt really important actually. We’ll see if my strength permits as I continue in this treatment.
What I should expect over the coming months is a progressive weakening as the cumulative effects of multiple rounds take their toll. I’ll start losing my hair in a few weeks. That’s in the back of my mind but the immediate goal is to understand what the trajectory of a single round looks like. From there I should be able to better anticipate what to expect. The primary issue right now is that my energy is way low. Let’s see how this piece progresses.
With all the sleeping I’ve been having some vivid dreams. Last night my body was like a wind-up clock running out of energy – kind of an obvious extension of my afternoon walk. Typically dream time for me is non-linear, but this one was different in that the cadence of my gait started fairly normal towards the beginning. By the end of the dream I had to use my arms to pull on nearby railings and fixtures to proceed. I was moving in molasses. Each step took about 20 seconds. I was counting. My legs were failing, a progressive paralysis.
I got up at 2:30am in a cold sweat feeling like total shit. My back felt like it was used for batting practice. But I broke a smile when I rolled out of bed and was able to make it to the kitchen for a glass of water. I did it quickly!
I think my mind was trying to tell me something:
Never mind the limitations. Focus on what you have.