RED, WHITE AND BLUE

What we won’t do for science. What that means to me is participating in cutting edge medical technology to cure a disease I currently have. There are risks with being on the cutting edge. My risks are several with two being of utmost concern: cytokine release syndrome (CRS) and neurotoxicity. CRS is the result of fever spikes with 100.4 degrees being the indicator of something going on above and beyond the CAR-T therapy. Day 0, the day I received my ‘reprogrammed’ T cells back, was July 6, Day 1, July 7 and Day 2, July 8. I was seen by a physician on Days 1 and 2. During the evening of Day 2, after 9 PM, my fever began to spike. I was having chills and climbed into bed hoping to drop the temperature and then recalled I needed to know what my temperature was, so I took it. 101.4 degrees was what the thermometer said. I couldn’t recall what the temperature cutoff was and went looking for it amongst all the literature I have accumulated in regards to this cutting-edge medical technology. I vaguely recalled there was a script I must recite to the answering triage nurse. All I could find was the phone number for OHSU Emergency department. I identified myself as an oncology patient and my last temp reading of 101.4. Dameon drove me to the emergency room. I was admitted. Kept in emergency room till the next morning when a room was cleared for me on the floor for cancer patients. 

The night in emergency was pretty uncomfortable. The bed was all mechanical, meaning no hydraulics or electronics to adjust the bed. Crank it up or crank it down. The mattress was very old and thin. I felt every crossbar under the mattress. My supposition was the bed was pulled out of storage when Covid patients required all the newer stuff for their treatment. 

I got breakfast, strawberry yogurt, fresh strawberries and fresh blueberries. My hospital physicians promised me a different bed which I got. By then a room had been prepped for me and a CNA delivered me to the room. Shortly after arriving I realized I was going to need an emesis bag. The RN realized they had none in the room and stepped out to get some. I realized I couldn’t wait and stepped into my bathroom and proceeded to unload breakfast. Yes, red, white and blue all over the nice clean toilet. After cleaning up the bathroom the RN asked what I had that was so red since there had been more strawberries than the yogurt and blueberries. 

Later the same day when coming in to check on me and asking how I was feeling I could not reply. I had lost my voice.

The next morning, I had a group call with several of my old high school classmates and I did not want to miss the call. As I was getting my iPad adjusted on my lap one of my classmates commented on my double chin. Yes, I have a double chin so what was the use in commenting back or denying the reality of a double chin. After our call had concluded and I was finishing up some bathroom duties I looked in the mirror and saw I had turkey neck or turkey doppelgangers. Two lymph nodes had swollen to golf ball size, which I believe is what my classmate had seen. One on each side of my Adam’s apple. I could gobble and shake my head back and forth and wallah turkey neck. Gobbling was difficult yet, but not shaking the head.

Sometime on Sunday, I received a medication, Tociluzimab, a medicine blocking inflamed proteins and my fever spikes stopped. Since other causes of inflammation were eliminated, they felt pretty comfortable stating my fever spikes were due to CRS. I spent Monday night and Tuesday night in the hospital to make sure and released Tuesday.

I have had no further fever issues. I have been feeling OK, energy levels low, doing more sleeping and napping.

I am writing this on Day 16. My schedule with my doctors is now once very 3 days and tomorrow, Sunday, Day 17, (7/26/2020), is the next day to see a doctor. 

Day 30 is 8/7/2020, and at that time my first CT scan since before CAR T started will occur. This upcoming scan will be very telling. Cross our collective fingers and keep those prayers coming.

I can still feel the lump but doesn’t seem to be as painful, lately.

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.