Scree (a new word)

Yesterday Jon's pulmonologist at Kaiser told him he is not healthy enough for the treatment that he was scheduled to start on Thursday. Today he went up for a health assessment at Hopkins and they agreed with that opinion. So they have put it off for a week, and we will see what happens. 

Scree, I just learned yesterday, is the word for little rocks that are on slopes or at the base of hills. If you try to hike up a hill that has a lot of scree, you go up about a step and then slide down two steps. You wonder how you will ever get up to the top of the hill. But eventually, somehow, you do. It just takes a lot of effort.  Jon is hiking in a pile of scree.

He looks better to us than he did a week ago. Coughing less, less scrunched over. But still not at all hungry, and his tongue is back to the fuzzy yuckiness that probably comes with antibiotics. When you can't eat and nothing tastes good, that takes away a huge amount of the fun in life.  Ice cream seems to be "not terrible" so we are slowly eating our way through a huge ice cream cake that Nancy made because she just couldn't help it.  It is delicious. 

While Benjamin was visiting, they managed to finish a number of stalled projects together. Benjamin probably would have been fine without farm tasks, but it made me happy to get stuff done, and get things off Jon's list. 

Meanwhile, we are getting so much done at the farm because I thought I was about to leave for a chunk of time. We have been in overdrive. Now we can just work like normal people. I am disappointed and worried about this delay, but we will continue to take one day at a time. Nothing else to do right now.


Comments

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