CAR T-cell Therapy -- Michael and Jenny's Story
When Michael had to have a hip replacement because his myeloma had devoured the bone, we knew the regimen of ninlaro, polyamist, and dexamethazone would be coming to an end. We had been anxiously waiting for VCU to offer CAR T-cell Therapy for several years. They were using it with leukemia, first, and then they began offering it to myeloma patients. When suddenly faced with this revolutionary treatment option, a decision had to be made. CAR T could be a life-saving or a life-ending choice. The doctors didn't hesistate. Michael is young, healthy (except for the myeloma), and has had numerous failed regimens. They only have four slots a month and they offered it to Michael. After hours of discussion and praying, he agreed to the CAR T-cell Therapy.
Less than a month later, he was at VCU for the apheresis of his plasma cells.
This small bag that took six hours to collect was flown directly to California where his new super-charged T-cells would be created. SIx weeks later, they scheduled his procedure. He spent all day Thursday, Sept. 28th, having tests and getting his picc line. We spent the night at Doorways and he was admitted Friday morning. The 10th floor of North Hospital is the transplant floor. The next three days they bombarded him with heavy-duty chemo to kill his immune system. It is necessary so that his new T-cells can destroy the cancerous myeloma cells. That was the plan...
Monday morning Michael complained of his face hurting and he had a temperature of 101.4. His very astute nurse did a COVID swab, just in case. In spite of our two years of avoiding crowds, getting all the vaccines, and missing major holidays/events; Michael tested positive. Mind that he JUST HAD HIS IMMUNE SYSTEM WIPED OUT. We were gut-punched. An x-ray showed fluid in his lungs. They immediately moved him to the Acute Cancer Care floor. My brother-in-law, Bob, got me into Patient First for a COVID test right away. I was negative, thank God! I couldn't bear Michael being alone through this. So I suited up and stayed with him. I contacted my family and friends to pray for him. To quote one of his doctors, "This is not good." Quite an understatement, indeed.
The next morning I walked into his room with all my safety garb and there he was joking with the nurses. His temperature was gone and the fluid in his lungs was not there, anymore. He had two COVID tests that day and they were both negative. "This just doesn't happen," said Dr. Warner from Infectious Disease. Well, it DID happen. God heals. Of course, COVID protocols still have to be followed for 20 days because of his weakened immune system. Michael seemed to turn a corner and the transplant was rescheduled for Friday. The same sweet nurse from the transplant floor was the one who came to his 2nd floor room to give him the transplant.
They transfused the three tiny bags of T-cells in less than an hour. I don't know what I anticipated would happen but it was a whole lot simpler than I thought it would be. The rest of the afternoon was uneventful. Later that evening he spiked a fever. His blood pressure shot up and his blood sugar crashed to 38. He was moved to intensive care.
Since then, it's been a rollercoaster ride. Once he stabilized, he was moved back to the 2nd floor. He was scoring 100 on his hourly neurological tests for three days and then the confusion started. He's been only able to score 3 or 4 out of 10 questions this week. Neurotoxicity is a scary condition. His confusion and nastiness was magnified by the demon dex. One evening he was so ugly to me that I left before visiting hours were over. When I stepped out of his door while peeling off the plastic protection from my sweaty body, I realized how very weary I was. I slept 11.5 hours that night.
Being a caregiver sucks all the energy right out of you. But, every morning I walk the four blocks to Critical Care with Jesus. We have a conversation where mostly I talk and He listens. Some mornings I hear His reassurance that He is with me, always. I begin my day with the promise that I am not alone and I am strong enough to endure this craziness. Then I walk into Michael's room and
he is seething with anger because he is surrounded with nurses and "care partners" who are his sitters. Michael is a person who requires a lot of personal space--which he is not getting. He looked at me this morning and softly pleaded, "Help me, Jenny." It broke my heart. He brought this on himself by pulling out his port needle and picc line several times. But, he is not in his right mind right, now. I tried to get the doctor to call off the sitters to no avail. This situation is intensely frustrating.
To be continued...