Gorey Details

I haven't offered any updates in a while. I didn't feel like sharing my condition, which I would describe as poor and unrelenting. We try to keep this cancer journal peppy and uplifting. The past 3 weeks didn't offer much material in that vein.

So, I'm going to give you the up-to-the-minute good news. This weekend (Jan 8-9th), I've felt better than I have since around Dec 20th. My prognosis hasn't changed for the worse. I tolerated my first chemotherapy session reasonably well. My oncologist seems onboard with my request to get residual DNA blood testing (Signatera) started in the near future. Perhaps best and most dramatic of all, the Durham Fire department was able to address the audible natural gas leak at our house - Neither death nor dismemberment for all present.

You can stop reading now. I'm fine. I'm sitting up in bed, typing, comfortable. My mood is good. The rest of this update will be heavy on GI symptoms that aren't pretty. I'm writing them down as an act of personal recordkeeping, so I can look back and remember how bad things were at this time. You can read on, or skip and wait for the next update (in which I will play the protagonist who handily triumphs over some minor short term adversity while simultaneously resisting the base instinct to parlay that chance victory into some larger optimistic ideology).

~Ed

Gory details:

I thought I had tolerated the radiation therapy really well. A week outside of treatment, the only symptom I had was some lower back pain - which was immediately addressed via some scheduled ibuprofen dosing. Then late December came rolling in.

Since Dec 20th, I've

• had diarrhea pretty much continuously
• gained firsthand experience on the symptoms of radiation induced rectal proctitis
• given up on underwear in favor of Depends
• not 'made it in time' on more than one occasion (from a room in my own home adjacent to a bathroom)
• had multiple 24 hour periods during which my bathroom visit total was >= 40
• not slept more than 4 hours in a row (and that only 2x)
• pretty much not left the house
• eaten more bananas and oatmeal than in the entire year previous
• on my best day, played one session of futsal in an adult diaper (disaster free)
• taken Imodium in quantities well over the suggested max daily dose
• lost about 10 pounds
• hydrojetted our main sewer line to unclog it 3 times (tangentially related to the household toilet tissue consumption rate)

It seems as if I've seamlessly moved from post-radiation induced GI symptoms into the post-chemotherapy induced GI symptoms. Both sets of symptoms are usually temporary. The post-radiation symptoms were particularly galling, as they involved many trips to the bathroom without much output. It was often like dry heaves, but on the opposite end.

Due to these symptoms, this was one of the most depressing Christmas seasons I've ever been a part of (Yes, worse even than Christmas Day I both worked manufacturing and was screened for an STI at Duke urgent care). We had in-laws and cousins come into town from DC and Arizona. My folks came up from Myrtle Beach. I mostly stayed in my room and tried to rest. Couldn't really eat, can't drink alcohol, can't get much rest.

Pursuit of rest was complicated by the fact that Karen was concurrently leading the charge on a master bathroom renovation. I was and am not happy about the timing of that renovation. Still, it looks nice. I can see the advantages of a job done rather than a perfect job undone. It’s good to have something for houseguests to accomplish. I also appreciate the efforts my family took to help along Karen's priorities. She deserves the help and the love. That said, it's pretty much my private bathroom whenever I'm upstairs. The only thing between me and a bathroom is the stiffarm I'll dish out on the way by.

I was usually able to make some kind of appearance during Christmas-time dinners, etc. There was one great sushi meal that I was able to take part in. Mostly, I just felt like a sick ghoul and wanted to be left alone. Wasn’t able to cook or host in any meaningful capacity.

I was able to make it to my first chemo appointment on Wednesday, Dec 29th. I had fasted from Monday at 9PM until the infusion on Wednesday afternoon (and well into Friday). Somehow, I was able to make it for 6 hours at the Duke Cancer center without a serious bathroom incident. The next few days were mentally challenging, in that I had a pump of 5FU poison attached to the port in my chest. Physically, however, they went fine. Very little nausea or dizziness, no vomiting. Good appetite when I broke my fast. GI issues abated for a bit, as there was no food in my system whatsoever.

I iced my hands, feet, and mouth during the 2 hour oxaliplatin infusion, so I didn't have any severe cold sensitivity afterwards. Oxaliplatin is a potent neurotoxin that can have side effects that include permanent neuropathy. I'd like to continue playing guitar/typing/buttoning my own shirts - Hence the prospect of this specific side effect causes me high levels of anxiety.

In some ways, I'm not missing out on much - The omicron surge is contracting a lot of social circles. Still, hard for me to see that as much of a silver lining. I'm homebound and incontinent. I'm not in a lot of pain, but I am in pain fairly often. I can't eat much other than oatmeal, rice, and toast. Absent for now are many of the little joys - sports, food, cocktails, workouts, socializing - that I used to build my day around. I know some of those conditions are temporary. Still, my 'quality of life' graph has a line straight down that started on Dec 20th, and has yet to change direction (Engineers would be wise to keep any observations on slope change to themselves).

I've been to the bathroom 6x in the hour since I started this journal entry. If you took the under on 4, you're out. Also hydrojetted the main sewer line, which clogged due to a sudden rainstorm. So I think that makes 4 times in the past 3 weeks.

As of now, I plan on starting my Monday off in pursuit of an escalation of my condition so we can get to the next tier of prescription medical intervention. I could be in worse shape, and I'm improving.