Some personal insights from last week
It's hard to know what to say or how to share with you guys. On the one hand I can murmur and tell you hard everything is, but 1) other people have difficulties as well, and 2) it wouldn't help you understand any better. How do you explain suffering? "Oh, I'm hot," or, "Oh, this hurts." None of that really helps you understand.
One of the the difficulties was I was attached to about 8 different wires----medi-port, EKG, pulse ox, not the least of which is the rectal thermometer. You feel like you're tied up. That's ok for a short while, but when you're not feeling great it's extra tough. Even rolling out of bed gets tough since you're trying to not get tangled.
The staff was great. They checked up on me hourly during the day, less frequently at night. The room was private, spacious, white and overlooked the garden behind the house.
My one real past time was listening to the unabridged Les Mis, though sometimes the story gets intense and negative and I didn't want to listen. The lack of distraction made it really difficult. We'll be better prepared for fever week next week with downloaded movies, downloaded talks and other books.
My diet has been completely simplified and it's still difficult to get things down. One of the nurses didn't understand that and ordered from a restaurant this incredible piece of salmon with mushroom sauce, potatoes and spinach on the side. But I couldn't handle even two bites of it. Alicia was the lucky beneficiary of that uneaten meal.
Alicia's mentioned fever therapy to stimulate my immune system, but when you're at 40 C (104 F) it doesn't feel great. It doesn't hurt it's just uncomfortable. And when you're alone in this room it can get tedious. The fever began building at 9 AM on Tuesday and stayed at that level until 2 AM on Wednesday morning. Once my temperature reached 40 C it needed to go back down. It took over 5 hours for the fever to come back down. I was in my underwear all day, warm, and the Wifi wasn't working so I couldn't watch anything to distract me. You can imagine how often I stared at the monitor watching my temperate dropping so slowly. I'd look back after 20 minutes and it would creep back up to 29 C. But that's the nature of fevers. I tried not to look very often but I couldn't help it.
The second day, they only raised me to 39 C but again my response was so strong (a good thing) that I blasted right through 39.0 C to 39.4 C. They gave me medication to bring the fever down. In short, my body had a great response to this treatment but it made it less comfortable. Those who are more sickly have a hard time getting to 40.0 C or maintaining that temp. You can imagine what a blessed relief it was when my temp went down and I was free to go home.
The following day I was hoping for a day off but no, back to the clinic on Thursday for checkpoint inhibitors. The cancer cells were weakened by the fever so that's a good time to add Ipi + Nivo on board.
Those were the hardest two days of my life, and there were times during it that I wasn't sure I could get through it. My prayers, believe it or not, got even more intense (didn't know that was possible). But I made it through the week. I'm resting all weekend and I'll do it all again starting Monday morning.