Framing the space between

Riding across Northern Pacific Bridge No. 9 felt like cycling through a cage this morning. I’m heading to the first of 28 appointments over the next 30 days at the U for my second round of study treatment. The tumor marker that had been climbing consistently has finally dropped slightly, a good sign. Now, my priority is to focus on the space between appointments: the time that belongs to me, not the study.

Categorized as Cancer, Ma

Keeping it normal

Simple tonkotsu udon at Kinzō between medical appointments at the U. Campus is a bright place to be: art exhibitions, student energy, reminders to keep perspective. Cycling to and from keeps things feeling normal.

Categorized as Cancer

Embracing defeat

Spent my day on the couch nursing a fever from the study drug. My current read, Embracing Defeat, covers the years of the American occupation of Japan, 1945–1952. Among all the failures of a collapsed society to support itself, a glimmer of hope is Japan’s 1947 constitution, which was written by a committee of Americans and remains Japan’s constitution today, remarkably with no amendments. Back then, America imposed democracy; today, our leaders undermine it.

Up next: two weeks of normal

Up at 3:45 AM for an early start with the final dose of this first phase. I managed to cycle home, but once I walked through the door, I was ready to slump onto the couch. Still, so far, so good. The research oncologist told me that over 80% of men at this stage of their prostate cancer journey have bone metastases. I don’t, and that inspires a massive dose of gratitude. For the next two weeks, apart from routine monitoring, I’m planning on living a normal life.

Occupied territory: finding comfort in a drab room

Another week of daily shots and observation. Mercifully, the lights have dimmers in my drab hospital room. As always, I declined to spend the day sitting up in bed, so they kindly rolled in a recliner, which, I guess, is somewhat similar to sitting up in bed. Continued my reading goal: escape to Japan by learning about a positive period in American history, the post-WWII occupation. Unlike in Germany, the USA governed through the existing Japanese state apparatus.

Kicking the daemon down the road

​It was raining, so I walked over to the U. I’ve spent about 30 hours there this week, and my commitment continues in four-week units, depending on the results. At a minimum, I’m helping cancer research, but I’m also hoping to help myself by kicking my daemon further down the road.

Categorized as Cancer

Minimizing visits to Urgent Care

Arrived today: silicone food containers. Excruciating pain from a tiny shard of glass embedded in my foot from our old glass set brought me to Urgent Care twice. Although these containers are expensive, I don’t expect them to generate any Urgent Care copays. They’re oven-safe to 450°F, so I’ll just need to watch out for burns instead.

Very nearly an armful of blood*

Got my first dose of the study drug, amB7-H3 TriKE. Here, tubes are lined up for one draw (the second of seven draws) as they monitor me over several hours. All of these are strictly for research, so the results won’t show up in my online medical record. *Inspired by a line from the classic 1961 BBC television episode “The Blood Donor” starring British comedian Tony Hancock.

Categorized as Cancer

Helping research, helping myself

Posted “Helping research, helping myself.” Click through for a link. Reflecting on a clinical study I’m starting on Monday got me thinking about Britain’s Common Cold Unit (1946–1990) where people volunteered to get the cold or ‘flu.

Categorized as Cancer

Helping research, helping myself

Next week, I begin a Phase 1 trial testing a drug designed to prime my natural killer cells against cancer. As only the third patient in the study, I’ll receive daily injections for two weeks. Reflecting on research volunteers brought to mind Britain’s Common Cold Unit (1946–1990), whose work included isolating coronaviruses and testing interferons, paving the way for modern immune-modulating treatments.

Categorized as Cancer