Spoon Theory

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!

Travels and Travails

Q70 bus kiosks, where you buy a receipt with your MTA card.

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”


airplane-wingThe 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”

Radioactive Me

Nephew Tyler after our big day on Thursday, and after Italian food.

What a week. After two weeks of being sick while trying to arrange everything for this past week, this past week actually happened, or is almost finished happening. I’m writing this on my homeward flight Friday afternoon. Summary: I got the clinical trial drug yesterday afternoon. The trial only has a single infusion, so all my future NY visits are for follow up. In three months they will scan me and see how well it is working. Main objective achieved, through the help, prayers and love of many. Thank you! Continue reading “Radioactive Me”