7-2 thru 7-4-2020 CAR T transplant begins

July 2, 2020, Sitting in my room at the Hyatt House

I have transitioned to Portland and a hotel room near OHSU’s Knight Cancer Center all arranged by OHSU. An oncology social worker contacted me back in May about housing to keep me close to OHSU after the CAR T transplant. I had to meet low income requirements and home distance to OHSU to qualify for a kind of grant program. I qualified although distance was right on the border line of being too close. My estimate is I'm 75 miles from OHSU and the funding agency prefers 100 miles, but the OHSU social worker was persuasive. It is my intent to keep these blog entries reflective of the CAR T process and how frequently the doctors want to see me to determine how I'm doing.

Today’s activity was all about getting me ready for my 4^th of July weekend and next Wednesday. Starting tomorrow, July 3, begins a 3-day course of chemo. Short days, two bags, 30 minute each, of a specific cancer drug, Fludarabine and Cyclophosphamide. The chemo drugs are administered back to back. There are labs and checkups before. There is hydration before. There will be a hydration period after the last chemo drug to flush the body out. Then providing there are no reactions needing attention I am through for the day. Saturday will be the same. Sunday starts in the afternoon with the same routine before, but after there may be a third drug administered. I can’t find it, the third drug, in today’s paperwork, so I am flying blind with my guess work. Then two days off, rest, and Wednesday, July 8, I get my overhauled T cells back and welcome a few new T cells (clones I’ll bet) in 10 to 30 minutes of time. Then it really starts. July 8 is Day 0 and 7/9 is day 1 and so on.

July 4, 2020

I have finished my second day of chemo. I had a problem connecting my laptop to the Hyatt House Wi-Fi, but Dameon has solved my connection issue, which now allows me to update on a timelier basis. Today was quicker than yesterday. Friday’s chemo session ended around noon. Today it was 11:30. As speculated above everything is progressing according to the plan. I am not experiencing any discomfort from the chemo drugs (yet). I think the only discomfort will be a loss of hair, again, which is not a pain issue, just a self-esteem issue. 

One issue popping up during yesterday's infusion was my PICC line and during today's infusion it was a topic of discussion. The line into my body has a tendency to pull out during redressing the bandage covering. This is not uncommon for a PICC line. There are marks on the tubing line every centimeter. When first inserted there were only 4.5 centimeters of tubing showing before the tube disappears into my body. Now 8.5 centimeters are showing. Four centimeters have pulled out in the 6 months of living with the PICC line. It only pulls out during the changing of the covering not during daily living activities. The bandage holds everything in place. Way back when it was first noticed the tubing was beginning to pull out I had an X-ray done. The radiologist warned if it reaches 9 then its replacement time. As you can see I have a half centimeter to go. The upshot is during my two rest days I must get an X-ray to see if current placement of the tubing end next to my heart is acceptable. If not then I get a new PICC line. I found the initial PICC line installation to be very easy and unobtrusive. Which does not explain my anxiety regarding the installation of a new PICC line. This issue will get more attention in subsequent blog entries.