Lovebuch family happenings

Yesterday I found out that my bone marrow came back with 0% leukemia. We achieved the goal of CAR-t CD19 therapy: a complete remission (CR)! It was great news. Briana and I went out for dinner at La Madusa, the nicest restaurant in Columbia City and co-celebrated the news with my belated birthday dinner. I felt good. I felt relieved. I felt hopeful. But right now, I feel less so and it’s annoying and frustrating, as the world of cancer usually is. In previous trials, 80% of patients achieve CR through this therapy, and it felt good to be with the 80%.  However, CR doesn’t always stick around, maybe 40-50% (I gotta learn this number) stay in CR for 2 years. And what I’m facing now is: how long will my remission last? Today, I was reminded of this by Dr. Maloney, who came into my room and we had an initial discussion about my options. We’re gonna talk more about it on my exit conference, but he wanted to get me thinking about it. Basically, we can do nothing and hope the CAR-t cells st

This post is a collection of three separate writings noted by the date. I got out on Sunday October 7th, just in time for my birthday the next day. Oct 5: Sitting in the hospital bed. Finally going to write a little something coherent about this most recent hospital stay. Overall, it’s been extremely taxing: my body, well, it’s been through the wringer with 104 fevers, constant heart-rates above 100, general lack of nutrition due to dietary restrictions and/or nausea, and a complete lack of walking more than 10 steps in a row--the rooms are small and I couldn’t leave them.  My mind, oh the every moment over-analyzing the day’s events as I didn’t want to miss any detail that might help myself or the team come up with answers, and the constant attention to what nurses and doctors were scheming so I could argue when I needed to. And my soul, oh dear, why did I come to the hospital in the first place? I lost total sight of the goal along the way. And now? I don’t want to hear the word

Things picked up on Friday, Day 10. After being distracted in the morning by dropping off Alpen at his new daycare for his first half-day, I headed to the SCCA for routine labs. I started the morning with lengthy labs and a lengthy dressing change, that was making me antsy that we hadn’t done vitals yet. When we finally got there, the nurse and the PA now in the room, they weren’t normal. My temperature was 38.2 C one tick below the “true fever number.” We tried another thermometer from a mobile unit: 38.3. That’s all we needed to see. The PA turned my way, “how do you feel about spending your Friday afternoon in the hospital.” Mixed emotions. Obviously going to the hospital on a sunny Friday in Fall is nobody’s idea of a fun time. But I was all the sudden energized, relieved that this was the best proof so far the t-cells were doing something. I wasn’t feeling feverish, I felt the same I had the day before. I sent out some texts to the family and they saw the awkwardness in the new