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 sleep for the first half of the week. More troubles with appetite and energy. More weight loss, something we could never have imagined. He was now truly just skin and bones.

In the last few days, Jon's strength faded and he felt bad. He really could not eat anything, and it was a struggle to drink. Naturally, this is not sustainable. Last night, we decided to take him to Urgent Care, even though we had no clear idea what they might be able to do. Benjamin and Alissa and Rebecca felt strongly that he should be in the hospital, and he needed nutrients since he was not able to put anything in his mouth. The doctor did not think a feeding tube was a good idea, and she said this is a very hard situation. They took more blood.

Before we went to Urgent Care, we had an appointment with a kidney specialist (nephrologist) who said that Jon was hyponatremic -- the proportions of salt and water in his blood were out of balance. Too much water, ironically. He prescribed salt tablets and told Jon to treat food as medicine and eat protein, to break the cycle of the hyponatremia, which kills appetite. This advice was really too late in the game. Jon was too weak by now.

He was admitted to Virginia Hospital Center in the middle of the night because the labs showed that he was severely dehydrated. Doctors continued to offer the same advice -- he needs to eat. Please, drink some Ensure. He just cannot. We asked about other avenues for nutrition and were told that they were complicated and hazardous and he should take an appetite stimulant. Meanwhile, Jon looked terrible and tiny in that hospital bed. 

Alissa expressed concern that he could die very soon -- he has no reserves, he has a small pneumonia, and he could experience multiple organ failure at any time. She decided to come home to be with us. I left my hospital post in the morning and Rebecca settled into the hospital room with Jon for the day. 

In the early afternoon, Alissa and Rebecca had a conversation with a different doctor who agreed that an NG tube could be a good temporary answer to the need for nutrition. Finally. They have been trying to get someone to agree to that option, but the immediate need to treat the dehydration was the primary concern. During the day, Jon's kidney function improved as he got more saline solution dripped in. 

So now we have some hope that he may get some nutrition. This roller coaster will continue to careen up and down. Jon wants the feeding tube, he wants to get stronger for CAR-T, and he is glad to be able to rely on the advice of his kids because he says his brain is not working so well.

Today I have been facing the truth that we have not done nearly enough to learn how to do the many things that Jon does. I know this is not a primary concern compared to the other more immediate concerns, but if he gets through this, we are going to work hard to learn how he manages so much that keeps the farm going.  

I am forever grateful for the incredible web of support. It is impossible to imagine getting through any of this without the multitudes who hold us in their hearts. Most especially, Benjamin and Alissa and Rebecca.