4/3/24 – The few people checking this site have surely figured out that I’m horrible at timely updates and right now, at least, I have a decent excuse for being horrible at timely updates. The early months of this journey have been enlightening on many levels, one of which is that so much of the experience is hard to articulate. It feels somewhat comparable to our recent Disney vacation. Exhaustive research-planning-scheduling, emotional overwhelm, suspenseful wait times, and leaps of faith to (try to) enjoy the ride. Especially the rollercoasters. Strap in, get pulled along by unseen forces, twists, turns, pauses, calm, exhilaration, and times when things feel completely out of control.
The days leading up to 04/01 – PET scan #1 to assess the first two immunotherapy infusions’ effectiveness – presented the steepest emotional ascent since diagnosis. My non-standard-of-care (convention-bucking) treatment protocol is based on a multi-phase clinical trial. Since so few details were shared, I spent hours going down research rabbit holes trying to determine what response markers (tumor size, lymph node activity, etc) they’d be measuring. No surprise, that only heightened my anxiety. Scans themselves have become routine thanks to consistent breathwork practice, but the pre-post anticipation is still excruciating. Thankfully, my soul sisters are infinitely brighter than me so instead of waiting most of the day to open MyChart, I was encouraged to check results after just an hour. There in fine, mostly unintelligible, print it said “overall favorable response.” Next day’s oncologist appointment confirmed our cautious optimism. While not at Disney’s TRON Lightcycle launch speed, things are generally going in the right direction. At least to a point the provider team has agreed to continue “chemo-light” immunotherapy for two more cycles, with another PET response scan in late May. Phew, I’ll take it!
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