I didn’t want to get out of bed today, but it was less physical fatigue (although the early morning blood draw really doesn’t help) and more emotional.
I was in an off mood last night after work and it rolled over into this morning. I used to do fun things on my day off – take dance or yoga classes, go hiking, bake bread by hand from scratch, make spritz cookies. Now I just go to the doctor. I’m tired of that, and not looking or feeling like myself and driving to Seattle. This round is a lot harder on me than the last one. I was doing this thing where I don’t even try to be in a better mood. I just wanted to wallow. It reminded me of a quote from a book I read a long time ago.
“In a weird way I must have loved my little collection of hurts and wounds. They provided me with some real nice sympathy, with the feeling I was exceptional. I was the girl abandoned by her mother. I was the girl who kneeled on grits. What a special case I was” (Sue Monk Kidd, Secret Life of Bees p 278)
You can tell I saved that from college because of the page number. Cite your sources or die.
Anyway, the morning was basically just me going through the motions – making a breakfast I ended up not really eating because it made me queasy, packing up for the day. I cried when Dan and I went to our cars and kissed goodbye. He’s probably going to be spend the day being worried about me because he is a tremendous worrier.
I made good time to SCCA and had a pleasant nurse for labs. She said I’m the first person she’s ever heard say they don’t mind lumbar punctures. I was surprised because they are just really not a big deal to me. I bought my post lumbar puncture coke at the cafe and headed up to the fourth floor to wait for the labs to be done.
Well, my hematocrit was down to 22, so I will be having another transfusion today. My neutrophil count also dropped so I get to start a new medication tomorrow. What fun.
Maybe not on the transfusion. My hold sample with the blood bank expired yesterday so they have to process it again and it takes four hours. Sarah and Christen wanted to see if they could get it done at a decent time so I’m not here so long on my birthday tomorrow. I’m either here longer than expected today or tomorrow and frankly I’m not in the mood for either so I really don’t care. I was going to visit Elizabeth at work and go to the cookie counter for the first time in months before Dan got off work but now with a transfusion I’d probably just go home.
I did get my sweet heated massage chair over on the infusions wing, so that’s something. I have been freezing today so I gladly accepted the blanket offer for once. Otherwise, I am still in quite the mood. The assistant who walked me back asked how my day was going and I told her I’ve been here but I thought to myself “well I woke up at six am on my day off to be too nauseous to eat the breakfast I made, battle traffic, and get stuck with a half dozen different needles so I will let you guess how that is going.”
(The blog did something weird and I can’t undo it. Sorry).
Well they scheduled the blood for 3pm and it will take 2.5 hours. Today sucks honestly. I thought I was actually going to get to do something fun and instead I have 10 hours at the doctor.
I decided to walk to a close restaurant for lunch because I didn’t pack one because I thought I’d be leaving by 11. After surveying my options, I chose the grilled cheese experience both for its proximity to SCCA and it sounded good. I got a super deluxe (aged chipotle cheddar, house smoked bacon, caramelized onions, farm greens, sun dried tomatoes, and fresh avocado on Parmesan crusted sourdough) and tomato soup. They were very good, though the soup was a bit salty. The sandwich was spectacular though. Just being outside made me feel a little better, but I do get tired pretty easily so just walking around until 3 is not an option for me.
I finished my lunch and went up to territory I had previously not charted: the sixth floor. I checked in at the Bezos immunotherapy unit and settled in.
I fell asleep on the couch and awoke to a nurse telling me my blood had become available early so she took me back to a room to get vitals and access my port (it was de accessed after the blood draw because I thought I was just having a shot today). We’re just waiting for the blood to come up from wherever they keep it. I got another warm blanket and an even fancier chair. When I said I’d been running cold today, the nurse said that’s part in parcel with having such a low hematocrit. I don’t remember that from last time, but it also wasn’t quite as low and it was warmer outside as well.
I just wish the blood didn’t take so long.
I only finally felt better listening to excerpts from William Wilberforce’s book on the way home. It always amazes me how timeless his message and critique of modern society is. He wrote in the 18th century and yet the gospel he preaches is just as necessary today.