Side Effects (First Infusion)

September 5

This day hit hard.

• Ocular migraines made it impossible to look at a screen. I spent the morning wearing sunglasses indoors until Tylenol kicked in, but still had some vision issues.
• Mouth sores showed up, making it nearly impossible to eat normal food. I managed with cold pizza, watermelon, Fairlife protein shakes, and Gatorade. Brushing my teeth started to hurt.
• A small rash developed at the injection site.
• After a shower, I got bad muscle spasms in my chest, back, and neck. It was some of the worst pain I’ve felt—like a real-life Gom Jabbar test from Dune.
• Exhaustion left me weak. Even a short walk was out of the question. Instead, I drifted in and out of micro-naps until the neck and chest pain woke me.
• Cold air outside helped the muscle pain in between wakeups.

September 6

The morning started with some relief.

• Around 5 a.m., the chest and neck pain finally eased up, and I was able to fall back asleep.
• Took a Tylenol immediately with my coffee to avoid a migraine.
• The mouth pain lingered all day and got a bit worse, but the prescribed glycerin mouth rinse helped a little. More cold pizza and watermelon were on the menu. Nothing sounds good to eat.
• I went to the Clayton Art Fair with Drew down the street. We found free parking easily, walked around for a bit, and then sat together on a bench for an hour. It felt good to be out.
• Back home, I fell into more afternoon naps.

Not excited for my next round of treatment. Hoping today and tomorrow I continue to rebound. My brother and his wife are coming into town before my next round. I am hoping for a good week with them.