It is Thursday when I try to write this. The infusion has given me impossible extreme cold sensitivity. Anything under 98.6F (body temp) is burning cold to me.
Susie on Wednesday morning.
Working backward for Wednesday, I went to bed a bit late as I had mistimed my meds, so I waited until midnight to take them. A mistake that will not happen once I am back on chemo. While waiting, I managed to finish the initial layer of “skins” on my ballon model–I am building a Dungeons and Dragons (D&D) scale ballon for the next campaign. I also used some wood strips to make a tiny deck put on the very top of the model to attach all the ropes. I also tied some rope around the cork in the gas bag. I think that will add some drama. I also sewed the edge of some light-brown felt. I will glue these on to add little patches. Again, it increases the drama of the look.
Before this, I rested and chatted with some folks. I plan to return to Roll20 and play StarFinder Role Playing Game (RPG) with some folks. StarFinder is a space opera RPG. The RPG is a neat rework of the Pathfinder RPG, a rework of D&D earlier 3.5 version. Famous for giving the players insanely complex powers and combat sessions that could last all night. And replaced with 4E, which is now considered a failure. Most of my 4E books went to GoodWill. StarFinder can be complex with rules to fly space ships and all the expected gadgets plus magic. Oh yes, a crazy game. Roll20 has a free trial adventure online with video chat and the rules built into 2D maps!
Corwin and Evan had dinner with us. I ordered from GrubHub. I want to thank Osman Eygu, Jim Sherwin, Michelle Vondenkemp, SEC leadership, for the last couple of dinner nights. It is very kind, and it helped!
Before this, Evan remained in the Air Volvo; I was in RiteAid getting snacks for Thursday’s beginning of Cycle 2 Day 1. It starts with me taking the pills and then showing for the infusion. More on that later in this two-day blog. I also got a prescription before it ran out.
I had to leave The 649 bar at 6ish to pick up stuff at RiteAid. Evan and I had a snack of Fondue with sausage and bread and green apples. I did have one pilsner there, and the bartender mis-poured and gave me 1/4 of a hoppy beer that was quite good.
We had come to The 649 after seeing Susie, and there we played Unsettled, my newest game from Kickstarter. I am still loving the game. Evan just liked it as it was his first play and did not watch the video, which left me to cover all the mechanics. I think once he gets it, he will enjoy it. I think it will play better with three (or more) players too. Unfortunately, we died within sight of the ship.
We set up the game, take the whole table, and order drinks. I wanted to see how it was set up out of the box as I had followed all the teardown instructions. Unsettled set up faster than I expected.
We drove from Forest Grove before this. We found Susie in bed at the Forest Grove Retirement and Care Center after being up for breakfast. Her speech was even more precise, and she was trying to chat with us. She was happy to see Evan with me, and I called her mother, and they talked on FaceTime. Leta was pleased to see Susie. We called Peter Koper next and Susie, and he spoke for a few minutes. He also asked about my status, and this let Susie again her what was happening to me. She struggles to keep it as she cannot retain new information very well, so hearing a repeat helps.
Soon it was time for Susie to get up for lunch. So Evan and I left for a bit and had lunch at the Grand Lodge just down the road. I had a diet drink and an Eastern Star Dip (a French dip but renamed in honor to the Masons that built the place). Evan had an Old Fashion, a 1/2 sandwich, and mushroom soup. All the food for this place was more than above average. McMenamins, a local chain, in my experience, can be hit or miss, but the pandemic seems to have improved its quality.
Susie was nearly overwhelmed when she saw us return again. We spent another hour or so with her. I got various old rock videos on my Apple, and we did some singing. I tried not to sing as nobody deserves to hear me sing rock, but it is hard to resist these songs. Susie enjoyed the singing and the music. Finally, I had to leave as I wanted to hit The 648 bar before it filled up. Susie knows I will not make it on Thursday.
Susie FaceTime with mom on Apple.
The morning was a blur of getting ready and racing. Evan was coming over and would get to use the new shower as he was playing Pickle Ball all morning. So I was rushing to use it first. I just managed to finish the blog and pop in before he got there. Just a challenge to make the morning more interesting. The plan was to get to Susie before her lunch and then play a board game at The 649.
Time seemed to fly away for me on Wednesday, and I was up before 8, but I read email and news for a while and soon was running late.
The infusion and other meds are making this very difficult. I have much worse extreme cold sensitivity. The 50F choked me and blinded me. I am now using a cane as the muscles are not working in the correct order (worse than before). Thus my movements are unstable. Any muscle group not used for a bit is hard to control. Talking is almost slurred at first. Eating, walking, or picking up something might not work at first.
Going forward for today, the day started at 6:30, the starting time for the first five days of Cycle 2. I don’t write the blog in the morning as I have to get to OSHU in Portland on the Legacy campus off of 22nd. I have all my snacks, laptops, Kindle, and magazines in my bag.
I take Air Volvo, just me solo, to OHSU Knight Cancer folks to Portland. A black new buy gas-powered Ford Mustang drives all over the lanes trying to find a way through the slow Oregonian drivers. The driver manages to improve his position by two car lengths at significant risk to the excellent paint on the muscle car. But, I do cheer the drive on. I make it to the parking garage for Legacy with twenty minutes to spare, 30 minutes trip.
They are ready for me, and we follow the rituals. No International travel, but I did look before Putin made it a less likely choice, at Odesa on the Black Sea. I tell them. I think the gal taking my info nearly sighed; everyone wants a break.
It takes two tries to get an IV with the long needle. Finally, it ends up in my left arm in the joint, the most accessible place to put it. My labs are good enough, and the doc, Eric, walks me to the infusions seats. I pick the corner one.
This time, the process seems much faster; I am reading a book on my Kindle, Americana, recommended by Jack Cone, and time just seems to run fast as I am reading. The book is an essay on American History and its impact on the lives of Americans. It is primarily a story of economics as told by the author (who was once an Economic Immigrant to the USA from India). The story of slavery it tells is hard to read as you wish for a different answer about the founding fathers. I agree with Jack: recommended!
Aside: I finished The Bright Ages. The book is highly recommended by me as a new look at the Medieval period and to expose the false narrative used by fascists and white supremacists referring to this period.
All the side effects are there and worse. The cold sensitivity is far worse, and the bees are back in my bloodstream from the steroids. I am a wreck, but I manage to get free and drive Air Volvo home; no issues there.
Getting out of the car is hard. The cold, 50F, is harsh. Even my legs are impacted and burning, and I can barely get my legs to bend and work. I have my hand on the car, using a glove as the cold metal burns like fire to me. I manage to get inside with everything. I grab the cane as I am unstable.
I order food delivered on Grubhub for some falafel, which seems safe with some hummus. My fingers are burning with cold, my breathing is troubled as the house is cold, 70F, so I set it up to 73F, which helped last time, and get under the electric blanket from Uncle Marting and Aunt Cathy, who lives in Wolverine, Michigan.
The food helps. I take a nap. Corwin makes a Blue Apron meal, I get them as a way for him to help, and he likes to cook. I am under three blankets, fully dressed, and a robe.
When I woke, Beethoven’s 9th symphony was just reaching the good parts. I turned it up. I had put on to help me get going, but I slept through most of the first two movements, which helped. Corwin loves it too. He thought it would work for ‘V’ for Vendetta, which used 1812.
And it worked; I am up and writing the blog for two days, had a steak dinner from Corwin (excellent), and trying to not hurt myself with cold, and using a cane. So cycle 2 sucks, but I am marching through to Beethoven.
Thanks to everyone for reading, praying, being supportive, and just being there.