Gratitude

Okay, I misspoke. I have a few more things to say...

Being home means not having to put your password into your phone every single time you pick it up because it doesn't recognize you in a mask.

It means sleeping in a bed that has the mattress we chose, on a frame that Jon built, in a room that is a temperature that we like. It is such a relief to be in our bed. For two nights, I have slept like a rock and got out of bed with a much happier back.

It means Jon can sit in the middle of everything, in his big recliner. Still coughing, but not feeling quite so hopeless.

It means staying up with Thalia until midnight, entertaining and being entertained, so that her mama can get a two hour running start on the night. Thalia has learned night and day now but she still starts her night later than she will eventually.

It means eating from our own dishes instead of the perfectly nice but SO not my size and style hotel dishes. And having forks that weigh something and spoons that are from Jon's mother.

It means walking directly outside to the car, even if it isn't really our car. We can go outside without using an elevator.

The view from every window is home. I saw four deer mincing past this morning and I even felt just a twinge of sympathy for them. 

It means that we are free from depending on the kindness of strangers. All day we were cared for by strangers -- cooking our breakfast, watching over our safety, providing health care, telling me to be careful while walking over uneven snow. Every interaction was with strangers who were caring and kind, but not our own people.

It means sitting at my own computer at my own desk. And couches that are made of leather and are big enough for any number of people and positions and the cushions stay where they are and don't slide off.

It means filling the woodstove, keeping the fire going, having a hot spot in the house instead of wondering why it is just a little bit too cold even though the thermostat says it isn't. 

It means doing laundry without spending $4 on the detergent for one load. The washing machines at the hotel were quite good, though, and it was a luxury to have them on our floor, so it's not like I had to go to a laundromat or anything. The washing machine at home is 38 1/2 years old, the same as Benjamin, and it is just right for us. Fully depreciated.

Schechechyanu all day long, night and 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