Some Calm Between Storms

It is a quiet Saturday morning -- the first quiet Saturday for me in about six months. The farm season is winding down to just a few ongoing tasks. Once we get the market trucks out the door (those people do not have a quiet morning, only me) I can now go back inside and lie on the couch and read, if I want to. 

This blog is not about me, but we are all characters in this ongoing story. The quietest time of day in this house is morning, when Jon and Rebecca are still not up. And for the next 16 days, quiet mornings will be only an aspiration, as we will be grandparent/aunt caretakers of the little girls while their parents finally go on their honeymoon. So this is a luxurious morning.

Jon has continued to improve every day. He cooked two meals yesterday and took back the rest of the administrative responsibilities that Rebecca had taken on for the last four weeks. He went shopping and took a turn picking up my mother from the trainer, for the first time in a month. It feels normal around here.

They have rescheduled everything, setting the process back about 10 days. In most ways, this is all good. Jon will have more time to continue to recuperate and we will leave home in late December, when the farm season has only one week left.  Jon has many appointments in the next six weeks, but now he is able to drive again and he will get himself to his MRI, his EKG, his PET scan, his random X-ray.  On Monday, November 10, they plan to do what they had hoped to do on October 30 -- collect the T-cells and send them to the lab. Rebecca will go with him on that long day in Baltimore because I will have Grana duty.

Many of you might not be up to date on this, but Rebecca is 36 weeks pregnant now -- healthy and strong -- so this has been a bit of a scheduling issue, worrying about how this will all fit together. Now it looks like Jon and I will be here for the first three weeks or so after the baby is born, which feels much better. 

I am guessing these posts will be sporadic, which is not how anyone likes to get their news. But I am sure I will write more as momentum picks up. And now you know we will have a 2 year old and a 4 year old here for more than two weeks, and shortly after that we hope we will have a newborn. Good thing Jon is getting better by the day.

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