All The News That's Fit to Print

Speaking for myself, I had such an interesting day today, from start to finish. And Jon had a good day with no new side effects and more capacity for eating real food.  That's the short version.

It took them longer than sometimes to get Jon into the IPOP so we had plenty of time to hang around and think about what we should be doing for the farm (ordering more earmuffs for tractor drivers, for one thing) and for me to get Jon caught up on all the progress.  Then the nurse came in and did the usual tests and the Nurse Practitioner came in to ask and answer more questions. Jon has a new complaint (heartburn) that worries him a little because it reminds him of the first time we were here when he had a hiatal hernia that hurt a lot, so she told him what meds to take and when.  He asked whether there could be a night when he didn't have to have these tubes coming out of his port, and she said that he has to have port access tonight and tomorrow night, sorry, because these are the nights when they have to be ready for any quickly developing symptoms. She did note that he is having a quiet time with this drug, and she thought it could be that there just aren't the large numbers of proteins being generated (the ones that used to tell us how active his myeloma is), so there is less response. But she repeated that we do not know yet whether this is working, and there is no reason to think that it is not. When Jon said that he wished they had a baseline PETSCAN from the starting point of this treatment, she thought about it and said they wouldn't be doing anything any differently anyway, and that's what matters. I have noted that on several occasions they decide not to do tests when those tests won't change what they do next. I approve. And all the nurses and support people are really good here, which is totally reassuring.

When the Benadryl started to make him groggy and he got his shot, I left him to his nap.  Went home and made myself a soft boiled egg using the system I discovered two years ago -- cooks perfectly in the tea kettle. I am now listening to the podcasts that I have gotten behind on, and I recommend them highly to everyone.  Julia, the talented and brilliant wife of our nephew Stephen, is producing a series with her dear friend; it is called Mother Is A Question.  It is part of the Big Questions series by PRX (I never heard of it either, but that is what they say at the end of each piece).  They have found some amazing stories to tell, and they have a great editorial team (I assume) and the production quality is excellent.

I went to Kaiser and picked up a bag of prescriptions for Jon, then I went to Aldi and got more ginger ale and some yogurt, and then I went to Patterson Park.  Probably anyone who knows Baltimore knows this park, but up until today I had only seen about 1/5 of it. I used to walk or run to this park from Hopkins and by the time I got there I only had a little time and energy left. I had no idea how big it is. It is about 135 acres of winding paths and duck ponds and beautiful trees and recreation areas and historic, odd buildings like a 19th century observatory. It felt like an Olmsted park to me, and one of the signs confirmed that "the Olmsted team" was part of the design process. There are children and old people and athletes and teams and middle aged slowpokes. It's a well-used, beautiful space.

When I got back to the car, I sat down on the grass for a minute, listening to a Krista Tippett podcast. Everyone I know except me listens to podcasts. It takes a certain kind of life, which I don't normally have, to be able to listen to something. Tractors are too noisy, our vehicles are low tech, and I am usually surrounded by people. This is luxurious.  Anyway, an older lady walking a dog came by and asked me if I needed help getting back off the ground. She had seen me sit down and she was worried that I wouldn't be able to get back up. I said I have a knee that doesn't like to get all the way down, but I can get up. That was nice of her. I am quite sure she would never have been able to get me back off the ground anyway.

By the time I got back to the apartment, it was almost time to pick up Jon.  He texted and said he was on his way back, no need to come and get him. He told me the Infectious Diseases doctor had come to see him but had nothing too useful to offer. She said she would look at his chart more closely and get back to him. She wants him to keep after the thrush, even more aggressively. While there is no consensus on it being thrush, everyone wants him to get rid of it.

From my own perspective, Jon is healthier than he has been in almost two months, if you don't think about the myeloma. All this rest and nebulizing and antibiotics is getting him back on track. Except for his weight. That is still a work in progress.  For the most part, he is no longer losing, he is just trying to stay where he is.

At 5:00 on Wednesdays this building offers a hot meal for the residents, brought in by a different restaurant or caterer each time. It's like living in a retirement community. For the first time, we ate in a dining room with other people, everyone eating the same food. We sat at a table with a lone man and ended up having a very interesting and friendly conversation. His partner, also a myeloma patient, is having a transplant here but had to be admitted for a fever. The caregiver is a big foodie, born in Mexico, grew up in Florida, moved to DC because he wanted to be in a place that didn't require him to drive. I would say there is a chance we will see this person again, in healthier times. He knows a lot about vegetables. This guy had a funny idea -- this building that holds this unlikely "community" would make a good sitcom.  You would have to make up the story lines, though. We don't actually cross paths that much.

I think this may be peak prescription drug time, so I had to take a picture of all that Jon is taking these days. They are trying not to add to the pile, but on the other hand they just keep prescribing more things whenever anything comes up.