CAR-T ROLLER COASTER OF RECOVERY
Updated: Nov 6
We are at Day 30 of Michael's CAR-T cell therapy (Chimeric Antigen Receptor). It has truly been a roller coaster ride of highs, lows, and loop de loops. The ride isn't over. There will be more dips, I have no doubt,
but I love the view from the vistas when we are on a pinnacle. The morning I walked into his room after three days of him being "nonresponsive" and he looked at me in recognition, "I know you... I love you, my Jenny." That was a moment of joy.
Then, there were days like the one that several exasperated nurses let out a sigh of relief when I arrived. "He's in there buck naked and won't let anyone near him, " his night nurse shared. Sure enough, there he was on the couch in his birthday suit. He was clearly in the throes of neurotoxicity. I had him talk to his son, Brandon, who made
him promise he would put on his hospital robe. Because he had pulled out his picc line, a "sitter" had been assigned to his room. Reportedly, he held the picc line up as if it were a trophy that night. After that incident, he had two sitters in his room, one was in training. The Geriatric Team (Surely they were in the wrong room, I thought.) were sent in to help in any way they could. Michael was highly agitated already due to the steroids but he felt his personal space was violated and he was ready to jump out of the window. I spoke to them frankly and shared that the presence of these people just a couple of feet away from him was making his condition worse. He needed LESS stimulation--not more. They agreed to remove the "training" sitters, thank God! I am sure we will laugh about this incident...some day.
One morning when I rounded the corner there were six nurses and care partners outside of his room. I could sense something bad had happened. Michael was in the bathroom just sitting on the portable toilet as a chair. He began sobbing when I put my arms around him. "I was accosted," he kept saying. He had been a very difficult patient and was uncooperative even to get his blood pressure taken. That's
what I figured he meant. A few minutes later the doctor came in and asked me if I had heard what had happened. I told him what Michael had said and he shared that he had pulled out his iv and decided to do a walkabout down the hall of the Critical Care Cancer floor. Of course, he was still on his 20 days of COVID protocol (although he had tested negative three times and had no symptoms since the second day). He couldn't be out of the room. Security was called and numerous people were needed to get him back in the room. Now, I understood why he said he was "accosted." That day was one of the lowest dips in this roller coaster ride.
Being neutropenic and not having an immune system both were expected side-effects of CAR-T Therapy. So is thrombocytopenia. Michael has had to receive platelet infusions every other day. The range in green is normal--the graph shows Michael's levels. This condition occurs when one's bone marrow doesn't make enough platelets, the blood cells that stop bleeding. He is in severe thrombocytopenia. The last thing that his PA said to him was, "Just don't fall." Now, it seems like foreshadowing.
Fire alarm at The Doorways...again. Michael had to climb down five flights of stairs without his walker. We crossed the street to wait out the situation. Stupid me, I was trying to identify what looked like a hawthorne blooming and he fell on the landscaping rocks trying to follow me. Wham! Right down to the ground--like something I would do. He was bleeding above and below his left eye, his hand, and several other places. He was adamant about me not calling the ambulance but I knew we had to call the transplant off-hours number. Dr. Mann called right back and gave me some things to watch. Aside from being very sore and bruised, he seemed okay. Brain bleeds can be fatal so a fall like this is very serious.
Anyone who has ever ridden a roller coaster has experienced the exhilaration of that moment you are on the apex, anticipating the drop with both excitement and fear. Do you scream or raise your arms? As a person who has faced death during my triple bypass, I understand how it changes you. Every day is a blessing. You stop putting off your dreams. You have little patience for bullshit. Being with those you love is far more important than anything else. Michael has always loved Broncos. To say he was thrilled when Ford introduced the reimagined Bronco is an understatement. We were on our way back from Duluth getting Michael a smaller size of pants when we passed two Broncos at the BMW dealership. One was gray and one yellow, both of the colors he loved in the Bronco. I did a u-turn and the next thing we know we are trading in my car for a 2021 cyber-orange Bronco! I think the winch and the lock box won his heart. For a woman who cried when she sold her Jeep, this Bronco is a blast to drive. Michael won't be able to drive for 60 more days but he is thrilled with it. The Bronco is a symbol of his second chance at life.
So the roller coaster ride continues. We are on a high right now. Arms up! We are ready for the next turn.