I ordered three meals each day from an extensive menu by placing a call to the kitchen anytime I felt hungry. I had daily housekeeping, room service, and the medical staff taking care of my every need. Even though I'd brought a heavy bag full of things to do, I rarely touched any of it. I ventured outside my room only once that week and I was surprised to see how large the unit and how empty the halls. I retreated to the cocoon of my room where I was enjoying quiet time and rest. Because I'd been doing so well medically, I was scheduled to discharge the next day on Wednesday, eight days after admission and T-cell infusion.
In fact, when the MD made rounds that Tuesday morning, I could tell that when he read off my blood markers, he was smiling behind his mask.
"I'm kicking this, aren't I?" I asked, to which he replied, "We're thrilled with how well you're doing."
Since he's the one who wrote this study, I was sure he was elated about my progress. This study is his baby and I am his number one subject. My case will be written up in medical journals and my good outcome will likely advance medical research. I was honored to be a part of something so important and life-changing.
But sometime that Tuesday evening, February 16th, I suddenly spiked a temp of 102. Since fever is the primary side effect, nobody was alarmed but blood cultures, a urine culture, and a chest x-ray were immediately done to rule out infection, per protocol. I continued to feel fine, except for hard chills and sweating, but my discharge the following morning was called off, for obvious reasons.
I slept most of the next day and then spiked another temp of 104.9 on Wednesday afternoon. Another round of cultures were done and Tylenol brought my temperature down quickly; within an hour it was 103.1 and two hours later, it was 102. Ironically, I felt better than I had all day; I hadn't eaten and threw up any liquids. Now, I was suddenly famished and managed to keep down toast.
CAR-T can cause CRS (cytokine release syndrome), a collection of symptoms that can develop as side effects when immune cells are activated and release huge amounts of cytokines into the body. The inflammatory response is overstimulated, much like what happens with COVID-19. Fevers, chills, nausea, low blood pressure, headache, and high pulse rate are symptoms that often occur but can be easily treated. If not properly medicated, this can lead to a host of problems and breakdowns in the body. The CAR-T protocol requires that patients are in the hospital for at least a week for this very reason.
So far, I'd had low blood pressure, nausea/vomiting, headache, chills, and fever but they'd been so subtle or random that I didn't think I was experiencing any CRS. I'd been previously told by my medical team that because I'd had such a low tumor burden, I'd probably get through the CAR-T without many issues, and I whole-heartedly believed this.
I had no idea I was already in Grade 1 CRS until my doctor informed me that Wednesday.
My son, who was also going to be my caregiver after I left the hospital, was at my home that day packing up my things to drive to Seattle to our temporary housing. Since I was previously going to be discharged, he thought the plan was still in place until he received a call from me, aborting the mission. Fortunately for him, I'd caught him in time so that he was able to return to his family while we awaited my new discharge date.
So I continued to hang out for another few days. I was told that if I didn't get any more fevers by Thursday evening, I would be discharged by Saturday. But like a running joke, when my temp increased to 100.3 Thursday evening and I continued to run low-grade fevers of 99.0 and 100.0 the next several hours, my docs decided to keep me until Sunday.
My blood markers for inflammation (CRS) were also increasing, which could possibly indicate more side effects on the way. Keeping me an extra few days was good assurance that I wouldn't be discharged before other side effects began, thus requiring a return to the hospital.
When I spiked another high temp of 101.3 on Friday afternoon, I was in CRS a second time.
A third round of cultures were done, more antibiotics were hung, and a second dose of Tocilizumab was administered by IV to counteract the side effects of cytokine release.
I spent Friday night feeling not-like-myself. Each time my IV sounded an alarm, I couldn't figure out how to use the call button to summon the nurse, so I began yelling through the closed door to my room: "Hey! You need to help me in here!" I also recall picking up things off my bedside table and holding them inches from my face, staring at them intently. Everything felt in slow motion.
Later a nurse told me that after the doctor made his rounds on Friday at 8 pm, I was still lucid and conversive without any signs of problems. But within a few hours, he was already being summoned back to my room. Something had changed about my behavior and speech.
Earlier that evening my nurse, noticing that I was not acting like myself, put an alarm on my bed so that I wouldn't try to get out of bed without assistance. I'd been getting out of bed on my own all week but my odd behaviors prompted further caution. So when I dangled my legs over the side of my bed, the alarm sounded and nurses came running. Fortunately, I was still aware enough to stay sitting on the bed and when nurses appeared to help I said, "Oooops, I forgot."
I knew that the bed alarm was on and when it sounded, I remembered that I wasn't supposed to get out of bed on my own, but I hadn't remembered to call anyone before I tried to dangle my legs off the side.
Was neurotoxicity, another side effect of CAR-T, settling in?
Part of my medical assessment every 12 hours was a cognitive test. I was asked to name 5 objects in the room, name the city and hospital I was in, the month and year, then count backwards from 100 to 0 by tens. Then I was handed a clipboard and was to write the same sentence each time: "Something's fishy at Pike Place." I'd been acing the tests easily, but at 0645 on Saturday morning, I signed my name in a very uncharacteristic-like and messy scrawl.
I was definitely in the beginning stages of neurotoxicity.
Sometime that afternoon, my son called and I knew that I couldn't hold a conversation. I tried to alert him that I was confused and that it was a normal side effect, but I couldn't get the right words out. I was stuttering and repeating myself. I remember telling him, "I will have the doctor call you," but in stuttered, fragmented words. I knew I was not in my right mind, but I didn't feel freaked out...yet.
My son later told me that he was able to hold it together while he tracked down the PA, my nurse, then called the housing facility where we were going to stay post-discharge. But when he informed his partner about my status, he surprised himself by choking out his words throughs sobs. Hearing his mother stumble through a conversation was disturbing and painful. I hated that my child had to hear that.
Fortunately, the hospital staff was already hanging Dexamethasone, a steroid that would combat my neurotoxic state, and the PA kept in close touch with my son, who kept his siblings informed about my status. Because by Saturday afternoon, I was deep in toxicity. I could not get my words out and I was well aware that no one could understand me. It was deeply frightening. I knew what I wanted to say, but I felt like a stroke patient who couldn't form any coherent words. Everything came out jumbled, slow, and not resembling any real words. I remember thinking, "That's not what I wanted to say!"
I used my hands a lot to gesticulate, I spoke very slowly, but none of it mattered since I made no sense. I remember crying a lot because I thought that this was my new state of mind.
Everyone looked at me with wide eyes, shocked that I couldn't manage to say anything coherent. Their fear scared me more.
Up until now, my cognitive scores were 10/10 but in my toxic state, they were 2/10. I could only name one item and follow one command. My written sentences continued to be a messy version of my signature and I didn't write the assigned sentence again until I started "coming to". I knew at the time that I wasn't writing the sentences correctly and it frustrated me.
It helped that my night nurse, Emily, kept reassuring me how normal my symptoms were and that she had medication to reverse them. It helped that she tried to understand me by coming up with a code: I was to hold up one finger for "Yes" and two fingers for "No" when she asked questions. Fortunately, I understood everything she said so this helped a bit, but only when she could guess what I was trying to say or ask.
I could tell that it was just as frustrating for her. I could see it in her eyes that she had no idea what I was trying to say and I could feel her empathy for my fear and frustration.
I even remember Emily going into the bathroom to cry.
After spending what seemed like an hour with me, she said she had to go. I felt grateful that she'd spent so much time trying to console me and it made me cry--again. I was well aware of everything going on around me; I just couldn't articulate any of it.
When I began to come out of my confusion in the wee hours of Sunday morning, I begged Emily--in my stilted and jumbled words--to tell me I would return to normal. "Will I be okay?" "Are you sure?" I eeked out between sobs.
I cried about my kids and openly sobbed about "My Mavis" and "My Wyatt," my grandkids. I emphatically drew out "Yessss" and "Nooooo," words I could manage to say, but I couldn't choke out much more. I was still mostly confused and I knew it.
Then around 4 am Sunday morning when Emily walked in, I woke up out of a deep sleep and suddenly started chatting up a blue streak. She later told the day shift nurse that it was as if a light switch had been flipped and I could suddenly talk again. With her back to me at the computer, I announced very loudly through sobs, "I know you understand me." She quickly turned around and said, "Yes, yes I do!"
I kept repeating that my daughter's birthday was March 8th and she'd be 16, then I quickly corrected myself. "No, that's not right. She's going to be 26!" I couldn't stop talking about my kids, and each time I did, I openly wept.
I was surprised that when I asked Emily how long I'd been confused, she said "24 hours." It had felt like five days.
When she left my room a few minutes later, I was afraid to return to sleep. I was afraid that I would lose my ability to speak again so instead, I thanked God for pulling me out of the previous hours of hell and pleaded with him to keep me sane. I also chatted with myself: "I'm going to be fine; I can speak again; I'm being taken care of."
If anyone had been listening in, I sounded like a small child with a small voice convincing myself that I was going to be okay.
I also practiced answers to the cognitive test. I named items around the room, named the hospital, city, state, month and year, but when I tried to count backwards from 100 to 0, all that came to mind was "Robin, Jim, Tom, Diane, Dan, Marty, Barry, Katie"--the names of my siblings in correct order.
When the day shift nurse appeared a few hours later, I informed her that I still couldn't count backwards by tens and she said, "You have an hour to practice," so I did. But beyond "100," I couldn't remember anymore numbers. When my nurse returned to give me my test, I looked at her blankly when she asked me to count, then I slowly started: "100, 99, 98, 98, 97, 96, 95, 94, 93, 92, 91, 90."
"Great," she answered. "Now count backwards by tens," and I did without hesitation. It was then that I was convinced I was finally past the toxic stage.
The rest of Sunday was spent quickly coming back to life.
By Monday, day 13 post-CAR-T, my inflammatory markers were near zero and my vital signs had remained stable, so I was taken off all antibiotics and steroids. I was doing so well that when my doc visited that afternoon, he said if I remained stable for the next 24 hours that he would make plans for discharge on Tuesday. As he said it, he knocked on the wooden door saying, "The third time is the charm!" He also leaned in close to whisper the news since he didn't want the discharge fairies to sabotage my release.
I couldn't believe how quickly my neurotoxicity had turned around and how soon they were willing to let me go, but I was ready.