chemo round 4 recap

The infusion itself was smooth. These are becoming routine. Michelle joined me and I had a new nurse, also excellent. I must say I’ve been very impressed with my Kaiser infusion nurses – they’re consistently great.

Current issues:

  • I gained 8 lbs water weight after just 2 days of prednisone – up to 152. We’ll see how the next few days go.
  • My tastebuds are totally screwed up. I can’t really articulate it beyond that my sense of salt and sugar are way off, and water tastes bad.
  • Sleep has been an issue. I’ve been sleepy during the day then tossing at night. I get a second urge to sleep around 4:30am then sleep well from then on.
  • Nausea thus far hasn’t been an issue but I’ve been having this sensation I can only describe as the olfactory equivalent of phantom limb syndrome. Basically I smell this medical scent (specifically the medical tape) even if I’m outside in fresh air. It’s not a particularly bad smell but clearly there’s been an association made with the chemo infusions such that it takes me to the brink.

On a broader level what’s more concerning is that my neutrophil counts are low, despite the zarxio injections I’ve been self-administering. I mentioned before that the cutoff for even having chemo is a concentration of 1000 (or 1.0 in the units below). My last lab results reveal that in my ‘fully recovered’ state (that is, after about 19 days), and with a regime of 5 injections I made it to 990. Close enough that they didn’t delay round 4 but concerning enough that now I’m upping the injections from 5 to 7. Hopefully that’ll do the trick and get me firmly above the line.

I asked the pharmacist about this and she suggested my bone marrow is weakening – there are only so many cells you can stimulate while in parallel destroying them with chemo. I asked the obvious question of why not just take this stuff every day, what are the risks/negative effects? She mentioned that patients that are even more compromised than I am (e.g., organ, bone marrow transplants) don’t take this daily so there’s probably something there. I’m sure there’s a reason though I was able to find a few long term studies suggesting overall safety so I’m not too concerned.

my ANC counts over time (note the last 3 data points are during treatment). Dipping below dotted line is not good.

Separately last night Saul said at dinner that he misses being small. We were listening to the song “you are my sunshine” that Michelle would sing to him often. His eyes started welling up. It was so innocent and to be honest we all started getting emotional.

Seeing nostalgia manifest in the tears of a 6 year old both reminded me how fundamentally emotional we are as a species (despite how rational we think we are), and that he’s definitely my kid. There’s so much to process indeed!

Nostalgia. The desire to go backwards, to live in a moment, to revert to simpler times. He’s adjusting to the challenges of first grade – so much more to deal with and so many social and emotional complexities to navigate. Kids have this wonderful way of cutting to the truth.

Nostalgia: I think there’s 2 parts, (a) a desire to go backwards in time, and (b) the desire to correct mistakes we’ve made, to set things right.

There’s value in feeling emotional pain but only in serving the future. But casting the mind back in fruitless wishes is the path to suffering if unaccompanied by learnings carried forward. It requires mental discipline to not get stuck there. There is a fundamental sadness in the fact that times arrow only travels in a single direction. I see it most clearly at dusk; can’t take the day back. It always brings on these paired feelings of nostalgia and gratitude. I know how well the day went depending the proportion of each. Since I was a kid it’s been this way. It’s not like an inward-facing depressed sadness but rather it’s the sadness that comes with realizing how finite our reality is. In ~100 years we, and all the humans we know and love will be gone and only the systems, learnings and structures will remain. What did we do, make and build that mattered? We are fireflies in the night; express then expire and never to fully comprehend what it’s fully all about as we’re stuck in our local realities. The colors shift perceptibly from second to second as photons hit the molecules in our atmosphere marking time in chemical reactions, not with clocks.

Regarding the desire to go backwards I’ve had the good fortune of not only having made many mistakes but MUCH more importantly of recognizing it. So I decided years ago that if I was to avoid spending precious hours stuck in regret race conditions I had to take active measures. So I instituted processes (I assure you, out of necessity not brilliance) to explicitly name errors and causes so I can be clear about correcting them, or at least bringing more awareness to the future. It’s better to objectively assess than to subjectively judge ones self. If there’s any magic in this simple practice it’s that one realizes that the number of mistakes to learn from. Summed over years this is nothing short of astonishing – especially if you’re anything like me. It’s like sifting through dirt and realizing there’s gold there!

When standing at dusk and taking stock of the day (I do it most days) it’s helpful to spend it present in the glory of the moment and not spinning on mistakes or un-acted desires. I can say the proportion of gratitude to regret is highly favorable these days. Living with cancer reminds me that the ultimate wealth is to stand at dusk and not feel a need for doing things over. Even if I feel like crap if I’m standing with one of my kids it acts as a circuit-breaker on any such thoughts. Cancer reminds me that life is short (even if I’m cured!). We don’t control the duration of life. We control our actions and hopefully, to some degree, this supports more positive emotional states.

People say health is wealth. I think emotional health is more important. Cultivate that.