June 3, 2024
Yesterday I had trouble getting around. Everything hurt—my legs, my hips, my ankles, wrists. We went to my aunt and uncle’s for a graduation party for my cousin about two hours south. It was great—I just didn’t feel good. Today I slept in until 1:30, but felt better when I woke up. We went to look at a couple new cars today, but I mostly just sat in our car and looked from there. I may have fluid building up in my stomach again—I feel like I need to pee all the time. It may be because of a constricted artery in my new liver—an ultrasound will confirm.
June 30, 2024
I think I’m feeling a bit better today—for the last few days maybe. My red and white blood counts aren’t much better, but I’ve had more of an appetite. I have been taking the appetite stimulant that the doctor prescribed, though it didn’t work when I tried it before. This morning I had four scrambled eggs, two pieces of toast, and I could have eaten more. This is all new for me. I haven’t eaten this much in years. For at least a handful of years my anxiety made me sick to my stomach most of the time, and eating made it worse, so I learned not to eat much. But yesterday I picked up breakfast at Joan’s.
I still hurt all over—mostly my hips, knees, ankles, etc.—but I’m getting around better. I’ll take any improvement, though until it seems more permanent I’ll assume it won’t last too long. Tomorrow I’m having a massage at the house, which I’m looking forward to.
July 7, 2024
I’ve been feeling a bit better the last few days. A little more energy, and things hurt a little less. A few days ago I even drove up to Montecito for the day. But then I woke up this morning having trouble moving my hands, chewing my breakfast—as if my muscles were all moving in slow motion. I overdid it. Some things are getting better and others are being wonky. My white/red blood cell counts are going up, but some of my kidney numbers are worse. A week from yesterday I’m having an angiogram of my hepatic vein. They’ll see if it’s constricted, and if they can, they’ll fix it. If that fixes the ascites, and if my blood keeps getting better, am I closer to being able to list for a kidney transplant?
July 9, 2024
Last week B. asked me how I make it through all of this medical stuff. I said I separate my head from my body. It’s as if I disassociate what’s going on with me from my thinking. Acute pain is usually short-lived, and I can’t control what illnesses or complications I might have, so what else is there to do?
When I was younger and things were bad I would disappear in my head—I could stare at a wall and find a place in my mind where things were okay. Or I might disappear into a book or a movie. When I was in the hospital I felt like I was two steps removed from my situation. For a while I wasn’t sure what was real and what was I was imagining. I really wasn’t there in my right mind. Assassins were trying to kill me at night and the nurses were having sex with corpses in body bags. (Not really.) I still sometimes wonder if what’s happening is real. Or did I die at the hospital, and this is my afterlife?