Round 3 recap

The round 3 chemo infusion was the smoothest yet. I had a new nurse and she was great. The whole affair took about 4 hours. Now that I know what to expect I’m a fair bit more relaxed about the whole thing. Also they made an exception where I could have 2 friends (vs just 1) sitting with me – Geoff and Abe – which helped. We were basically talking the whole time. I knew this was against the rules but the nurse looked the other way. She then “reprimanded” me (going through the motions to say she did, it was cute) for having too many visitors. Very tactful.

Anyway at one point Geoff turns to me and we talk about what’s a life well lived. He tells  me about his friend (a Stanford philosophy professor, also the one who officiated his beautiful wedding) who taught him an interesting assessment that Nietzsche wrote about. It involved a demon which makes it all the more compelling, Nietzsche offers:

What, if some day or night a demon were to steal after you into your loneliest loneliness and say to you: “This life as you now live it and have lived it, you will have to live it once more and innumerable times more: and there will be nothing new in it, but every pain and every joy and every thought and sigh and everything unutterably small or great in your life will have to return to you, all in the same succession and sequence — even this spider and this moonlight between the trees, and even this moment and I myself. The eternal hourglass of existence is turned upside down again and again, and you with it, speck of dust!” Would you not throw yourself down and gnash your teeth and curse the demon who spoke thus? Or have you once experienced a tremendous moment when you would have answered him: “You are a god and never have I heard anything more divine.” If this thought gained possession of you, it would change you as your are or perhaps crush you. The question in each and every thing, “Do you desire this once more and innumerable times more?” would lie upon your actions as the greatest weight. 

I love this. You basically are asked as a thought experiment to re-live your life an infinite number times. If that idea is horrifying there’s something there worth examining; if it brings joy then that’s a great sign. I guess the prospect of getting cancer an infinite number of times doesn’t sound all that appealing. That said getting this time to be more closely connected with friends/family/colleagues is pretty awesome. I really haven’t felt this loved, maybe ever. That’s pretty weird but it helps offset the hardship. I live in more gratitude than ever and this is a large contributing factor in my positive mindset. I cannot do this alone.

In contrast to round 2 I’ve thus far been more fatigued. I actually did need to sleep when I got home. And I’ve been more tired just in the past few days than in round 2. I can tell I’m a bit off. For example these drugs give me weird cravings such that I’m now eating like a 6 year old; the other night for dinner I ate 3 hotdogs on toast drenched in mustard and like 8 cups of apple juice – I was so lazy/weak that I drank it out of a lid-less sippy cup. Whatever. I’m trying to “be kind to myself” which is really not a strength, but I’m working on it.

It’s apparent that I’m now living my life in 3 week cycles: so far it looks like the trend is basically a few days of good (thanks prednisone), just under 2 weeks of not so good, 1 week feeling ok in the lead-up to the next chemo. It’s mentally taxing and disorienting. My 4th quarter of 2018 will consist of 3 more such cycles. Outside it’s spring in SF with blooming flowers, warmth, sunshine. But the seasons I live by now are instead driven by the rationality of drug cycles rather than the earth’s proximity to the sun. Takes some getting used to.

I’m now back into the 2 week hard part. I actually don’t feel as strong as I did the last 2 cycles on prednisone. I woke up this morning with a swollen gland in the left side of my jaw, ugh! I suspect my body is starting to fight something. I feel tired already and remain vigilant in paying attention to every physical detail at this point.

I didn’t sleep well last night so left this morning at 5:15 and did a very light workout (40 minutes mindless elliptical machine+podcast at local gym). I’m propped up on prednisone so that definitely helps with the energy. My immunity will fall off starting now and I’ll do all I can to keep from getting compromised. This consists of several parts:

    • light workouts as I can for energy
    • avoiding crowds, keeping distant from schools/other people’s kids as much as I can (obviously hard)
    • G-CSF injections
    • avoid some foods that may cause infection – e.g., sushi, root vegetables
    • meditation – trying to remove stress, anxiety as that’s always been a trigger inviting opportunistic infection. I’m doubling down on this, especially as we enter flu season with 3 kids at home. I find this to be increasingly essential to my wellbeing.

Today I started again with the zarxio injections (G-CSF). Quick note on the injection since it’s been such a blocker for me. For my first injection this round I got on a face time with my brother Eli in Colorado. He was (is) an amazing athlete – champion wrestler, diver, gymnast. In gymnastics one of the major causes of injury is mental lapse/hesitation vs. a lack of skill. So his old gymnastics coach taught him a great mental exercise that we walked through that was very helpful, and that I’ll share.

Before doing any “routine” his coach would make his athletes visualize the it from beginning to end, perfectly, 10 times in a row. In doing this it helps to actually move your body to rehearse the movements while keepig the eyes closed. So I went through the movements of injecting myself with the needle: picking it up, pinching the skin, positioning the needle, depressing the plunger and removing. When completed you then get tee up the action on a countdown, commit then do it. It’s worth emphasizing (and I screwed this part up) to include the fear and anxieties you feel in the context of the exercise. What happened was I went through the motions but when I opened my eyes I got up and started getting anxious. I picked up the needle then had to put it down. Fail.

Eli: “YOU DID IT WRONG. Let’s try again.

So I visualized it again a few times end to end, this time including the feelings of apprehension. That was the key, factoring in the emotions, the fear & anxiety. When I opened I counted down 3-2-1 then I then just did it. Easy. Such a great technique. Thanks Eli!

Thanks for joining Geoff, Abe!
it’s odd but the smell of the blue tape makes me gag
Eli guides me through a visualization exercise of the self injection on facetime