One Week (and a day) at Home

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 it feels like the pneumonia is retreating. He is still very tired but there are lots of reasons for this -- pneumonia takes it out of you, he was in a hospital bed for four days and nights, and he has not really used his body for anything vigorous in over a month. Plus there was the chemo and CAR-T. 

We will know when Jon is truly feeling better when he starts to cook again. He is starting to think about shopping, which is step one.

I think that today is the first day where he has not looked demoralized. And Rebecca notes that he ate more today than yesterday. Eating is very low on his list of fun things to do and he scowls when we encourage him to remember to eat and drink.  Rebecca and I fret that he will lose too much weight again. He is not worried about that.

All in all, it was a week of forward movement. We went to see the Kaiser oncologist on Tuesday morning and she didn't have much to add -- she took him off a few drugs and said she would streamline the orders for his blood tests. They still took 16 tubes of blood on Thursday because there are multiple doctors who want to test for stuff. After proving to himself that he could walk all the way to the morning appointment from the parking garage, Jon insisted on driving himself to his afternoon appointment with his PCP.  That was the first time he has been behind the wheel since the first of January. He did it, no problem.

My own horizons have opened up again, being home. We had a freezing cold CSA day on Sunday (the coldest we have ever attempted -- the kale and collards got flash frozen in the bags). I have been swimming and that is delicious. Whenever I can, I have been holding this baby who never wants to be put down and Rebecca has been working about half time. Tonight I started my first sourdough bread of 2026. A nice CSA customer has been starter-sitting all month and it is in great shape. Thanks to Nell's quest for more singing opportunities, Gordon and I are new members of a choir for old people and our first rehearsal was so much fun. 

The outdoors is still encased in snow and ice so there are no sidewalks and the golf carts are all marooned under cover. Our porch is filling up with frozen compost while we wait for the snow/ice to melt. 

All will be well.  I don't know what we are hoping for in the next week, except that Rebecca and I are really hoping Jon will start cooking again soon. That would be awesome.