Day 1

We arrived Monday about 9:30 for his appointment for the central line insertion. The doctors talked him into the IV sadation instead of a local. When I was called back to see him after the short procedure he was still a little loopy. We went to admitting expecting to have to wait for a bed but they were ready for him on the 8th floor. He got settled, met with the staff, changed into his Captain America shirt, hung the things from the kids and the Captain America shield. We past time waiting for the 4pm dose.

He measured a loop of the floor finding two loops would get him an 8th of a mile.

 Dose went fine but he did say there was a smell or taste to it (it was all in tubes, bags, and IVs so I don't get that.

He was to late to be in the food service schedule so I got him some food. I stated until the nurse shift change and left about 8 (wanted it to be light out while I was looking for Erin's place- where I was staying for the night).

Joe texted later in the evening to say he did over a mile walking the floor and he had a bad headache.

Joe had a hard night with little sleep and the side effects hitting him about 4 hours after first dose. BP is low and how things smell bothers him. He had a little breakfast.

He had a dose at 4pm yesterday, midnight and at 8 today. He is trying to sleep now before next vitals check wakes him again.

Please excuse typos as I'm typing this out on my phone.

Thanks everyone for your prayers and support.

The worst flu ever

We are going forward with High Done Interleukin 2 (it is used on kidney cancer and skin cancer). It makes the body's immune system work overtime to make more T cells and Natural Killer Cells to kill the cancer cells. Joe is told to expect the flu x 10 (and will be worse after a few doses). There are a whole host of side effects (capillary leakage which leads to low blood pressure, kidney shut down thus water gain and more work for the heart, heart A fib, greater risk of infection and less than 1% of death/coma I'm trying to ignore). These side effects will be controlled and may skip doses because the point is to to make him as sick as they can which out crossing the line. Most side effects go away once the IL2 is out of the system. It is administered via central line every 8 hours in 15 minute long infusions. The first dose will be Monday July 30 in the afternoon once the central line is put in that morning. Because of the risk of infection visitors are limited (and they have posted visitor hours where as the CC did not). Since his last dose will be Friday afternoon 8/3 it is not likely that he will be released until Saturday morning meaning I don't think I'll be at Maggie's baby shower. I'm disappointed because I want to celebrate my soon-to-be-here nephew (and I love party planning). Also, I think I'm the only one who knows the name they have chosen so it will will be harder for people to pay me to disclose the name :). I'm still doing planning work before it and I hope I can still be there but right now Betsy said they will take care of it (with my protégée Ellie). Betsy is going to be at my house for the week with the kids. Joe is told to expect to not be moving from the couch for a few days. He does want to try to stop by the Couturier gathering and then crash at Mom and Dad's. I told him we will see. At the very least the kids will be there and I want to stop for a while too. Right now Joe to focused on the grading for the class he teaching online for BGSU and getting ready for the new school year. As always, Joe’s sense of humor is there. Part of yesterdays’s appointment was confirming what was already know in CAT scans. He had never had one done of the brain before. He was cracking jokes like “Results of brain scan: I have one.” We do it all over agin Aug 13 for another week. That may mean Joe will not be teaching the first few days of the school year which starts for him Aug 28.

Signs

I can't say it any better than Joe: "Our trip to UM was informative; the IL-2 treatment has significant pros (4x higher cure rate for patients like me vs. general pop) and significant cons ("My job is to make you as sick as I can"; less than 1% mortality, coma). If you can spare a prayer for wisdom for us as we choose our course of action, it would be greatly appreciated. Also, FWIW, what's the first vanity plate we saw driving away from campus with questions swimming through our heads? "MERICLE"" Then today I saw these two quotes in my random bible quote app "Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests know to God." and "Trust in the Lord with all your heart, on your own intelligence rely not; In all your ways be mindful of him, and he will make straight your paths." I have my issues with business of the church but when you get beat over the head three times you can't keep questioning.