No News Fit to Print

There is nothing new to report. Jon is feeling some discouragement about all the things: a lack of energy, feeling cold all the time even though the rest of us are warm, a back that feels worse than it ever has even though there are no indications of anything bad on any scans, and this damn cough that never goes away. Sleep is elusive.

His blood counts took a dive this week, which may explain some amount of the fatigue (on the brink of getting a call to come in and get some more red blood cells). All the numbers are down. If his neutrophils were this low when we were still at Hopkins, they would not have let him go. All this means that he is still immunocompromised, as much as ever. His platelets even went down. He isn't  allowed to shave anymore because he might bleed too much. He doesn't love shaving anyway. Now he is giving himself shots to stimulate his bone marrow to make some more neutrophils.

Alissa is here for a week and she has some thoughts on medications that might be useful to Jon. He needs to have a conversation with his various doctors since Alissa is not his actual doctor. She is very good at sorting out the issues, and pointing out that most of his pain is unrelated to the CAR-T -- it's all chronic stuff that has been around for a long time and needs to be addressed, including his emotional pain. Some of it is the result of many years of cancer and treatments, wearing things down, but she says there are still useful medical responses.

We know he is feeling depleted because he didn't even try to take over the cooking of the common meal last night. Rebecca and Benjamin and Yael and I finally followed through on a plan to cook for the neighborhood, after many months of making no effort at all. We made a deluxe salad bar with lots of roasted vegetables and chopped colorful toppings -- not Jon's kind of menu anyway. He made the dressings at home because that is his superpower. 

These granddaughters are still the biggest source of smiles and joy, and we are lucky to have them all around. They are SO entertaining.

It is still unseasonably cold out. When it warms up, Jon will come and oversee some tasks that he would do if he could but at least he can tell us how to do them effectively. There is a flat tire on a tractor I need as soon as the soil warms up, the spader needs to be greased. I still think that will help his mood -- doing something real and useful. No one likes being a tired patient all the time.

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