I woke up at 5:50am to go to Northwestern for my second immunotherapy session. I didn’t have time for liquid eyeliner. I don’t know how to wear cozy clothes outside of the home. I was scared.
First they take labs and we have to go through the failing attributes of my veins. This one is too small. This one is too rollie. This one has a fat ass and is a bad speller. Then I am supposed to pee in a cup and end up peeing all over my hand. So far I am not acing this appointment.
My brother Tommy, my husband, and I sat in the tiny room. The thermostat was set at 75 degrees. They now get to do their favorite activity: describe a movie from the 90s that I haven’t seen. Last time they did Rudy. Today they did The Running Man with such passion that by the time they got to the end the thermostat read 76 degrees!
The doctor and nurses and clinical trial people crowd into the room. Last time I felt like I talked too much but then they’re all just staring at me and because I only have one thing to talk about…I launch into it.
Here’s the cute thing about being almost 47 and recording your cancer symptoms for a clinical trial: who fucking knows what’s from the cancer and what’s from being middle-aged? Creaky joints. Thin skin around my eyes. Bleeding gums. Sores in my moth and throat. The desire to go to bed at 9 and sleep til 9. Food tastes gross. Nausea.
I have exhaustive notes. I’m looking forward to being praised. Perhaps Northwestern will institute patient grades, in which case I’ll get an A. The medical people don’t talk very much and I can’t tell if it’s because I’m so entertaining or because they can’t believe how much I’m talking about myself. Maybe both.
My labs come back and my liver enzymes are higher than they were two weeks ago. That plus my “constellation” of side effects made the team decide to have me skip three days of the Cabozantinib (the targeted treatment) and redo the bloodwork and maybe reconfigure the dosage. I’m incredibly disappointed. They tried to convince me that it was fine and normal and part of the process but it feels real shitty.
The labs didn’t stop me from getting the immunotherapy infusion. And I think overall I got at least a B.
I came home to a kitchen full of happy 13 year olds on a lovely summer day and all I could do was feel sorry for myself. Which I HATE. I don’t want to be poor me. I want to be poor lucky me.
Tomorrow will be better. And today was good too, it just felt bad.