Impatient Patient

Jon sleeps about half of the night and the other half he apparently spends cataloguing all the ongoing issues that need to be addressed. When I finally wake up (at 5:50, for example), he wants to outline the situation as he understands it now.  Sometimes his assessments are dark, sometimes they are practical, always they are looking into the future. None of this one day at a time stuff for him.

Today he is feeling completely sick and tired of this IV pole. He is over it. He wants to speak to a dietician immediately to find out what the plan is. As he says, "there is no plan." When we left the hospital, the plan was for him to be on TPN for a couple of weeks until he was stronger and then we could find out whether he could get the G tube. This man wants nothing to do with a G tube at this point. He wants to eat his calories. And he wants a nutritionist/dietician to tell him how to do that. His daughter the doctor does not want to see him get that weak and sick again, so she is the one who suggested the G tube because we just don't know if Jon will really be able to consume enough calories by mouth.

He had a routine appointment with his PCP, the appointment that happens after you get discharged from the hospital. He warned his doctor that he was going to rant, and then he ranted. This doctor isn't really engaged in the decision-making process, he doesn't have a real role here, but he knows Jon. And when Jon says he wants a direct conversation with his oncologist immediately, his PCP says he will pass that message along.  Jon is feeling like his oncologist doesn't actually know him at all, after all of this. He is feeling like she is not paying attention to what is happening. 

One of the things he wants to say is that he has no intention of going back on the chemo that they tried for a few months. It was killing him. He wants a different answer. Not a lesser dose. Something that isn't going to kill him.  Last night Alissa reminded him of the various other options that are still out there. But no matter what, he needs to be stronger and healthier in order to resume any cancer treatment.

This is what is stressing him out the most -- the fact that he hasn't been treated for Multiple Myeloma in about three weeks. Every doctor in the hospital told him that he needs to be stronger, and that's what the current focus is. It is quite possible that these three weeks away from the chemo have finally made it possible for him to eat again.

The good news is: our bathroom scale says that Jon has gained about 6 pounds since leaving the hospital. So, no matter how impatient he is with the process, it is working.

In summary, the patient is pacing in the cage. He does not want to be a sick person anymore, he gets up and walks with his pole wherever he wants to go, he gets his own food when he can, and he sits at his desk and does his regular farm tasks. He has been home for five days. The first day was not good. Today he said he wants to fire the home care people from Kaiser (who haven't even come yet, except for the lady yesterday who spent a long time doing an intake interview). But then he remembered that they are supposed to change his dressing. But then the nurse called to say she is sick so could he please go to Kaiser tomorrow to get his dressing changed. Those people are about to be cut loose.

Rebecca has been doing her job every day while watching over Jon. Everything happens in this crowded living room. Meanwhile, I have been working long days on both farms, avoiding this growling patient, coming home in the evenings to get caught up. My main job is carrying the pole upstairs at the end of the day and listening to the latest revelations in the early morning. And doing the dishes. I am astounded at the speed of Jon's rebound, I am not surprised at his impatience, and I am so glad that he is feeling like himself again. We are all catching up on our sleep, little by little. I am much less tired than I was five days ago even though my workdays have been unusually long. Working is much easier than worrying. Farming is so much easier than sitting by a hospital bed. Counting my blessings while weeding spinach.