Hold Tight and Pretend It's a Plan

The results of the bone marrow biopsy were good. No doctor (except Alissa) has talked about the results with Jon, but the report says that there is no evidence of myeloma in the bone marrow. So far, it seems like the CAR-T is working.  The blood tests do not completely line up with that, but maybe they are lagging and there is still myeloma floating around. His M-spike went from 3.4 to 2.6, which is progress for sure. That's the indirect measurement of the presence of myeloma. His M-spike has been much lower than that before, and much higher, but the trend here is good. The main news is that his energy is increasing. He still has only left the house to go shopping a few times and he hasn't returned to the real world yet (still very immunocompromised, and will be for a while to come), but he is back to engaging with random things that interest him. Last night Rebecca and I looked at each other while Jon got going on what he has been reading about Papua New Guinea (cousin/nephew ...

Jon's health has improved bit by bit. Compared to a week ago, he is more energetic, less dour, more likely to try to get something done. He is also showing signs of a new cold, so there may be some more of that, unfortunately. With Jon there is no such thing as a normal cold. His blood counts went up some after the red blood cell transfusion and that certainly helps his overall sense of well-being.  On Monday, Jon and I made one of those ambitious trips to Pennsylvania to get some farm supplies and drop off our car that has multiple organ failure by now. We decided that the problems with the car were getting complicated enough that we wanted to take it back to the place where we bought it in New Holland. It was a multi-step process just to get organized to get the car there -- first we had to have someone replace a recently broken window in the big pickup truck and that meant Stephen had to bring that truck back from the other farm, then I had to take that truck back to the farm so...

This is not an analogy that I have run past Jon, and it might not be all that good, but I have to say that he is struggling right now. The pace of recovery is not fast. It is slow enough that he seems discouraged, every day. So what's going on? He has been really tired, but that could be a direct result of very low hemoglobin. This is not unexpected, it is just makes him feel crummy. Today he went in for a transfusion of red blood cells and we didn't remember how long that takes, but each bag took 4 hours, and he got two bags. He left home at 8:00 and got back at about 6:30 in the evening. Anyone would feel discouraged at spending a whole day in bed at Kaiser, especially since he didn't expect it to take that long. They infused him at a very low rate because his blood pressure has been high and they haven't managed to fix that problem. They adjusted his meds again today but he doesn't necessarily trust that the doctor who prescribed more drugs knows enough about his...

There has been some amount of feedback saying that the sudden end to the updates does not feel quite right as there is undoubtedly still news. I have been pondering this and have decided that maybe it makes sense to make this a weekly report. Perhaps enough will happen in a week to make it feel like news. I shy away from posting a blog about daily life when there is nothing noteworthy about it, but if there is something to tell about Jon's health, I am happy to do it. Kaiser did give him a CT scan the day after we got back, and someone said his lungs look better. But the Hopkins people said they look worse. No one seems to be too worried as no one has asked for any more checkups. The best news is that Jon is completely off the oxygen, as of today. That is measurable progress. He has been paying attention to his oxygen saturation level all week, and it has slowly improved (the goal is to be at a minimum of 92% all the time, more is always better). He still has a cough but in general...