Onwards to cord-blood transplant!....

Dec 22: On Friday, Dec.10 , we got the news that the abdominal tumor was gone (yay!) but the cheek area showed some activity (boo). This was good news because the face is treatable with proton therapy, but the abdomen was not, so if there is still leukemia somewhere, better in the face, then the belly. However, the question of whether or not there is active disease in my sinus is up for debate. It’s unusual that a chemo treatment would be effective against one tumor and not the other. And It’s also possible that the sinus showed activity because I had a  cold or because the area was damaged by the tumor so it is a site of inflammation. There is no way to know for sure whether there is active disease in my sinus because a biopsy would be out of the question,, but for heading into a transplant, we decided that it’s better to be safe than sorry and we should treat as if it’s active. Treating it means 10 days of a focused proton beam to the face. There’s some potential long-term side-effects, but nothing that’s not treatable. Short-term side-effects would be mild: some taste alterations, dry mouth, tooth-ache, potential dry-eyes. I’ve already gone in for the work-up where they make another mask (still green!) and get the images they need to plan the course of treatment. It should be fairly similar to my cranial/spinal therapy in that I’ll be in the same room, and I'll be getting 2 gray a day again, except not as intense and (hopefully) not produce the nausea that cranial did.  From all the treatment I have received, the most PTSD I have is from the spinal cranial proton therapy because I was bolted down to a table with a tight mesh mask on so my head wouldn’t move. Then combo this with protons that hit a certain part of my brain, and they created flashing red/blue lights (didn’t matter whether eyes open or closed) and also caused me to smell a supes gross smell. The combo was instant nausea. Even on my full anti-nausea load of Zofran and Ativan, I still had one time where I needed to vom on the table, and almost did in my mask, but they rushed in and got it off just in time. I thought I could put it all behind me, but when they scan your wristband in the hospital to link medicine and patient for the computer, it’s the same red/blue alternating lights. So I get a flashback multiple times a day when I’m in the hosp.

The plan for the next month has been shifting some but as of now my admission date to UWMC for pre-transplant conditioning is Jan 17. If all goes to plan, I will receive the cord-blood cells on Jan 23.  For the next week or so I’ll be wrapping up the transplant tests like pulmonary function tests, EKG, an echo-cardiogram, a bone marrow, and some more meetings with the docs. I also start proton therapy on 12/30. My radiation appts are all at 7:50 pm which is nice in that there are no conflicts with scheduling scca appts. Traffic is better too. But heading out of the house in the dark for something unpleasant like radiation does suck. It interferes with dinner: don’t want to go on the table with a full stomach! No way.  And it also means I’ll miss Alpen’s bedtime for the next two weeks, which is compounded in severity because I then immediately go into the hosp and miss another month. Bedtime can be a fun time to connect with Alpen and read him books. At least I got the weekends.

12/30 update:I started proton therapy last night. A few more deets later in the week, but I got the smell and the lights. Produced mild nausea, increased heart rate, fear. Not looking forward to the next two weeks

12/31 Update: Happy New Years Everyone! The therapy tonight wasn’t as bad. I kept my eyes open during mask application and I could see out of both eyes. I didn’t breath out of my nose and smell wasn’t as bad. Lights were still annoying, but keeping my eyes open and focused helped. Still too afraid to not take zofran before radiation for anti-nausea. Also, in case your curious what the smell is like, I narrowed it down to ammonia mixed with burning iron (aka. put toilet cleaner into a burning skillet).

1/1 update: No proton radiation today. Yay!

1/10 update: Gingerale before the treatment helps

1/11 update: My whole treatment can be done during the song "Freebird."

1/14 update: All treatments complete. It rained every night during the drives.

Jonathan got everyone sunglasses for xmas!