For the past week, I’ve felt extra fatigued. This morning, at my appointment in NYC, my liver panel showed very high liver enzymes, just a week after they were nearly normal. So they ordered me an ultrasound of the liver. But this afternoon’s ultrasound didn’t turn up any explanation. It seems their best guess at this point is a delayed gift from Keytruda. So I’m at LaGuardia, waiting to fly home. It has been a difficult trip because of the fatigue, GI issues, and the stress of yet another complication. At least I don’t have to come back for four weeks.
They want me to get my levels re-tested Monday in Knoxville and to go see a liver specialist. I don’t even like liver.
Well-intentioned people thoughtfully remind me I don’t know when my life will end or even if I will die of cancer. The Hypothetical Bus of Death, which runs over so many (hypothetically), could end my life tomorrow morning, instantly removing all my uncertainties and anxieties, replacing them with certitude and serenity.Continue reading “Hypothetical bus of death”
This video is a vivid explanation of living with Lupus. But it applies also to people with incurable cancer, chronic fatigue, fibromyalgia, or other debilitating illnesses. Thanks to my friend Knitting Beth for bringing this to my attention. It’s worth the 13-1/2 minutes. Watch it!
Who invented travel? Someone without cancer. And did you know the word travel has the same origin as the word travail? It means difficulty and hardship–being in labor. This is not an etymological accident.
If you break it down, what’s required to actually travel? For this example I will use the travel to New York I’m doing for clinical trial participation. But travel for pleasure (an oxymoron–travail for pleasure?) doesn’t necessarily have a shorter list. Continue reading “Travels and Travails”
The sun has risen at 35,000 feet. Another week, another trip to New York. Tomorrow I have a follow-up appointment at Weill Cornell. Blood draw. Meet with my doctor. Fill out two questionnaires to gauge, semi-objectively, how I am doing. Am I experiencing pain? Where and how bad? And how am I feeling overall? Short answer: I’ve gone back up to 60mg of prednisone to try once again to fix my GI issues. So I feel hopped up, like a rabbit made out of Silly Putty. But I’m also tired from getting up at 4:20 AM for my early flight.Continue reading “Secaucus”