Treatment begins again

Day 1 of treatment plan number two:

August 7, 2024

I got the new meds yesterday and took my first one this morning. To start with positive things, the special compounding pharmacy has it in my record that I need braille labels, so when my meds arrived yesterday, the labels were already on the packaging. It was cool to be able to verify for myself that I had the right meds and the right dose, 40 MG. I’m probably going to get a kick out of reading the label every time I get a new bottle. It’s such an unusual thing in my life.

I felt scared about starting treatment again. I was nervous the first time around, because I didn’t know what to expect. Now I do know what can happen, and that is far more frightening. I’ve already started trying to do self-care things, hoping to prevent some of the problems from last time. The lotion on the hands and feet is back. I’m using the mouth rinse my friend Denise sent me. I rinsed my mouth after taking the pill this morning. I mean, it’s radio active, I should rinse that out of my mouth.

Bad timing on a book I chose to read. Last week I read a book about the Challenger space shuttle by Adam Higginbotham. The book was so good I immediately got his other book about Chernobyl. I don’t really know much about that incident, except that it happened. I thought I’d learn things by reading this one, and I sure did. Some of the technical info about nuclear power plants was boring, but the descriptions of the human tragedy, the radiation poisoning really got to me. I hurt for the people and sympathized. My tiny experience with radiation though my chemo pills is nothing compared to what they went through, of course, but it still hit home. I’m willingly, purposefully ingesting a tiny fraction of what they experienced, and parts of what happened to me were terrible. I’m thinking I may not finish that book!

I’m not likely to experience much in the way of side effects today, I suppose. If I do I’ll be back to talk about it.

Day 2:

August 8, 2024

No side effects so far, except fatigue. I slept well last night. I had been out of my Trazodone and just got it refilled yesterday, so I had a very good sleep last night. But about 1:00 this afternoon, I started feeling very sleepy and wanting a nap. I have been fighting it and probably won’t get that nap. I bet I have an early night though.

I had a very special experience this morning. A man who had been my church pastor around 1991, heard from good friends of mine about my cancer. They gave him my number, and he called today to pray with me. It was absolutely lovely to talk to him again and to hear about his wife, family and 11 grandkids! Daniel is around my age, so when he was my pastor, he and his wife were also friends. He’s a true Christian man, kind, loving, not judgmental. His words brought me comfort and confidence this morning. He also told me to call or text him anytime, to consider him my pastor if I like.

I’m still waiting for side effects, but at least two days in, I’m feeling well, mostly have my appetite, mouth is fine and no problems with hands and feet. Yet. Yay.

Day 5:

August 11, 2024

Five days in, and so far, it’s not bad. Yesterday evening, I had mild nausea, but it went away pretty quickly. Today, I have that burned tongue and lips feeling again. Cold things don’t bother my mouth, but the warmed up cheese Danish I had for breakfast did burn my mouth a bit. I guess a little dizziness, a bit of nausea, and a sensitive mouth isn’t too bad.

I lie in bed at night and imagine that my feet start to hurt. I wake up, stand up, and there’s no problem with my feet. My hands are fine as well. I guess I’m paranoid about the feet, because Dr. Z wants me to stop taking the meds if hand and foot syndrome shows up again. I’m afraid of what will happen if I have to stop taking the meds. Any chemo pills are going to have the same types of side effects, some even worse.

I’m having trouble sleeping. I thought I might be awake all night last night. the day before, I woke about 2:00, and the night before at 4:00. I can’t keep doing this. I’m doing my best to stay awake all day, hoping that will make me sleep better tonight.

I do worry about the meds. It could go different ways. My body could adjust, and I’d have few problems, not changing my life much. It could be that the meds accumulate over time, and the side effects get worse, like what happened when I was taking the higher dose. Well, I’ll only know as time goes by. One day at a time right now.

I never thought about how complicated life could become when I started chemo. Just the fact about how I have to flush the toilet twice and then wipe lid and seat with disinfectant wipes eliminates the ability to easily go somewhere that might involved being away from home long enough to need to use the bathroom. I never know what could happen. Will I be out with friends and feel nauseated? Will I be hit with the fatigue wall? I am feeling mostly positive, but I do have to think about these things, until I know how the new dose of Cabometyx is going to affect me. I’m planning to go to a beloved uncle’s funeral this week, and it will be a long drive there, a Catholic funeral, the afterward part, and then the long drive home. I guess I’ll just pray I have a healthy day on that day.

I guess I’ll post this now. Unless things start going crazy with side effects, I’ll probably be posting every few days.