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.