Walking Uphill, In The Cold Rain, With Heavy Boots

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 history to make those changes.

Eating has become a challenge again. No appetite. At least I think his taste is much better. But he says he feels like he is full already and never wants to put anything in his mouth. He tries to eat, knowing that we all have opinions about this. He thinks that he would rather wait until he feels better. We don't think that's sustainable.

Alissa is here for a few days and is sharing some of what she knows about the various drugs he is on, his options for drugs that might make his appetite better (not many options, but some), and offering her suggestions. 

Often I say Jon is grumpy. I don't think that is accurate right now. He is low. Don't take it personally if he doesn't seem to want to talk to anyone right now.

When I wrote last week, he was just off the oxygen. His pneumonia seems to be much better, maybe all better except for the cough. He went shopping one day, by himself, even though Rebecca and I both offered to go with him. He isn't really cooking yet but he did make a very good French onion soup yesterday because we had a bag of frozen onions from last summer that I wanted to cook down and he doesn't trust me to make that soup.

On the plus side, every single one of our descendants was here in the house this evening. This was spontaneous, a response to Alissa's arrival. Liana and Alissa tried to figure out what to make for dinner and eventually there was a pot of venison and peas and corn ready for everyone to eat. My children always make fun of me when I revel in the fact that we are all here, but it doesn't happen all that often, and how can I not take note? Jon walked in the door after a long day and all of his family was at the dinner table. That lifted all of our spirits.

I believe that he is going to feel better in the near future, especially with more red blood cells. When we left Hopkins, they said, "you are not out of the woods yet." They said he would start to feel better at about Week 5. Tomorrow is the beginning of Week 6. Getting RSV set him back a few weeks, so we can keep our expectations a little bit more modest.

We have all been snowed in for over three weeks and for the first time, melting is happening. Hope springs eternal.


Comments

  1. AlFebruary 14, 2026 at 7:44 AM

    Hana -- thanks, much appreciated. (I know I am being redundant, but there you are).

    I can certainly understand how having all the kids and grandkids was very uplifting. I remember all the times we traveled to/from LA. and he spoke of his family, which dampened down some of our more passionate discussions.

    ReplyDelete

Post a Comment

Popular posts from this blog

Improving

I haven't been to see him myself yet today, but I hear that he is starting to express some angst about all the things he should be doing on the farm. This is good. It has been days since he even thought to pick up his phone, which certainly was an indication of how terrible he was feeling.  The NG tube was put in yesterday and they started feeding him right away, even though they didn't quite have the equipment in place to do it all to code. Rebecca says they manually pumped the formula, which must have been a challenge since the pace of delivery was supposed to be extremely slow and careful. By 10:00 last night, the charge nurse had installed the pump. They still didn't have all the right equipment but they managed to piece everything together and Jon was fed a small dribble of formula all night long. Today they are working on increasing the dosage, as his stomach shows that it can manage this. Things are looking up. Alissa and Rebecca went in this morning and Anna is taki...
Read more

Rolling Updates from the Waiting Room

I have to admit that we/I did not pay any attention to the details of what to expect today. We have done this a couple of times before, and I have hung out in this waiting room in years past. We were supposed to arrive at 6:30 to check in to Interventional Radiology so Jon could have a central line installed for cell collection. We did that, arriving right on time. They immediately took him back and gave me a number to watch on the board (no more names, just numbers). So I know that the patient is in pre-op. What I don't know is how long this takes, or how far I can wander. Nor do I know when we are expected at the next location for the hours-long pheresis event. Of course, there are reasons for this lack of attention. One is that we trust that we will be instructed as we go, and we are familiar enough with the hospital and its systems. Two is that the baby was the most important news, and this was much less interesting.  In brief, Rebecca had an appointment at 8 AM on Friday, the ...
Read more

Back Into the Hospital

Since the last report, a little over a year ago, Jon has been dealing with a lot of treatment-related symptoms. It has been a tough 15 months or so since he started on the Telqetamab. The main side effect was loss of taste, which led to a general loss of appetite and a struggle to eat. Through it all, Jon has continued to take care of us by cooking our dinners, maintaining so much at the farm, helping us to keep everything going. By about June, that treatment stopped being effective and the oncologists decided that he was strong enough to be a candidate for CAR-T (another long and involved process that can be described later, but it holds promise), even though he lost about 40 pounds in that year. His spirits were good, his energy was good, he had adapted to his loss of taste. The doctors prescribed a bridge treatment, something to keep the myeloma quiet if possible. It was known to have many dire side effects. Back to the decadron, a whomping amount of steroids that means very little ...
Read more