Lovebuch family happenings

Things have been going farily well recently. I'm down to every other day clinic visits and weekends off. Spending less time at the clinic, and more time on normal stuff. As a whole, blood counts are returning. My bone marrow showed hypocellularity of 80%, meaning I have the cell production of about a 20 year old right now. (rule of thumb 100% - age is typical cellularity). So there's no issue with the production, but my platelets are barely recovering. I held in the low 40s earlier in the week until today when I dropped to 34.  Our guess is that my spleen is sequestering and destroying them, gobbling them up instead of letting them float freely.  This is annoying and has brought some discussion to the potential of removing my spleen, or a splenectomy. This will be a question for I will explore further with GI next week. I will approach a splenectomy cautiously because it is a major surgery with serious complication risks and long-term issues. But it could also free me of this ...

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 cell...

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 w...

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...

Monday morning and still in the hospital but my time to leave Is scheduled for 1 pm today. Writing from my phone so a bit tricky, but will do my best. In sum: huge thank you to  anyone who has donated red blood cells or platelets!!! If you to do something good for cancer patients: donate! I went through a few bags this weekend and wouldn't be writing this without them. Still no signs of any car T action, and thankfully no more signs of any stomach bleeding. The cause of the stomach bleed is thought to be from the chemotherapy and low platelets combo. The chemo I took destroys any dividing cells. Well the cells of the stomach, esophagus and mouth turn over more than other cells in your body so the chemo kills/irritates these cells.  typically these are places where you have issues after chemotherapy (mouth sores, nausea, etc). The combination of wounded stomach cells and low platelets meant some routine oozing turned into a fairly large bleeding event and that is why I came in ...

Hi all, Derek received the modified T-cells on Tuesday. Pretty short infusion at the SCCA, and then two hours of being "watched" afterwards. Many labs were drawn. Afterwards Derek was feeling well enough to go for a little stroll at Kubota Gardens. I'd never been there, but it was really beautiful. Alpen hated it however as can be seen from the pictures! After the cells on Tuesday, Derek had normal clinic visits Weds. Then around 1 AM at night I heard him say "Briana" from the hallway. I thought, hmm, that must have been in my dream that he was talking to me. But then I heard it again, and I realized he was talking to me. He needed to go to the hospital. Our first response was to drive on down, as we've done before. However Alpen and I both had colds. I couldn't really fathom waking Alpen up in the middle of the night and dragging him into the ER. When he was smaller, he could do that kind of thing, but now he's his own litt...

As of one hour ago, all the chemo I will need to prep for the CAR cells is done. Now I’m waiting out a bag of red blood cells.  The train is moving along, but I wish it could move faster because with all this waiting from July, the leukemia inside of me has been multiplying. We tried our best to “keep a lid on it.” But now it rather high like 80% of my marrow, this means it’s squeezing out space for my body to make my other blood cells. So my counts have been dropping every day due to my increasing cancer load--making me feel more tired and be more susceptible to infection--and it would be nice to stop waiting and take something that will get to the root of the problem of too much ALL in my marrow. This past chemo does a little bit against the cancerous b-cells, but it also does a little bit to all my cell lines. So it’s a slight benefit the chemo, but I’m ready for the ALL-specific special forces to get in there. I actually had a little bit of good news today when I found out my p...