Hopkins Check-up: Check

Day 31.  Jon went to get some blood tests done and to check in with Jen, the N.P. who watches over the  patients in the 60 days that follow the transplant. She noted that Jon was there alone and said, "you drove here by yourself?"  He did not say that he had driven us both home when we left on May 3.  We don't say anything that isn't really necessary (like that we used to go home from time to time, very carefully, to lift our spirits).  She was glad to see that he was well enough to drive. It would be hard for her to imagine the kinds of driving he does...loading and hauling equipment with the big 4x4, pulling trailer loads of sawdust.  He is not driving tractors because of the risk of riling up the molds and fungi in the soil, and he is definitely not turning the compost.

I guess she doesn't really know Jon, so she wouldn't know what questions to ask, other than the normal ones about eating and sleeping, nausea and fatigue levels.  He is still trying to learn to work with his unpredictable digestive system, but he is better than he was a week ago and that is what matters. We have been home for 13 full days and we are getting back into the rhythm. 

Jon is cooking meals for other people -- to me that is a sign of health. But things still taste disappointingly bad to him -- that is a sign of not being all the way better.  On the days that he works too long, he suffers consequences and has to rest more the next day. But the trajectory is good and we are full month away from the time that they say he will start to notice that he feels better.

This feels like the last report until the PET scan which happens on about August 1.  Thank you all for your care and attention. I think we are finished with this particular chapter and now we just have to stay healthy.  We continue to keep our distance from everyone, and there is usually someone with covid nearby, so this keeps us vigilant. Thank goodness for warmer weather where we can all be together outside.  

Stay well.  Send texts and emails.  We love hearing from you.


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