Diagnosis: Acute Myeloid Leukemia (AML). A Journey

I went to visit George today (Sunday) at around 2:00 and was surprised to find him still in his sleep shirt and in bed. Normally, I would find him dressed and sitting in the recliner. He was fatigued and his mouth was hurting badly. He now has sores in his mouth, which we know is from the radiation.

I asked him if he was going to get dressed and he said he didn’t see any point. I asked him if he wanted to walk later, and he said that would be a good idea. (We never did).

Meanwhile, the nurse came in to change the dressing on his central line, so he had to take off his sleep shirt. He asked for a clean t-shirt and I got him one, so at least he changed his shirt!

His untouched lunch was sitting on the tray at the foot of his bed. I asked him if he wanted to eat something and he said no. He had no appetite. I told him I eat when I’m not hungry all the time, I am ashamed to say. He said it’s not just no appetite, but an actual aversion to food. Plus, it just hurts his mouth too much to eat. This must be why one nurse advised him to eat like a bear preparing for hibernation several days ago! She knew this was coming.

His nurse, Jessica was in the room for all this and she asked him if he was nauseated. He said he was queasy. So she offered him some Compazine for nausea and some Dilaudid for his mouth pain. He accepted both and Jessica went and retrieved the meds, which she injected into his PICC line.

Both of these medications made George drowsy and while we tried to watch a movie, he spent a lot of the time with his eyes closed.

I asked him several times if he was ready to try and eat a bit and he always refused. “Not right now” was the standard answer. But it was 3:00 and I knew they would be bringing his dinner between 4:30 and 5:00 and it would start again. And he needed the nutrition. So, I kept at it. He finally relented and agreed to eat some of his cottage cheese and yogurt I had put in the fridge to keep cold.

Both the nurse and I praised him for getting that food into his body….he usually loves to be encouraged and praised and it motivates him, but it seems like he doesn’t care anymore. He just wants to be left alone. He said, “if they have to hook up a bag and give me nutrition through my PICC line, that’s fine with me.” Parenteral Nutrition (PN) is not the optimal choice…but it is good to know that it’s available if necessary. According to the binder we received, approximately 1/3 of transplant patients will receive PN (supplemental nutrition given through an IV).

When I was getting ready to leave, they brought his dinner tray. UGH. I knew he wasn’t ready to eat again, so I put his cottage cheese and yogurt in the fridge. For breakfast, he had Rice Crispies soaked in milk, which seems to be one of his go-tos now. I said I would call him when I got home to make sure he eats something. I called at 7:00 and he said I had woken him up. He told me he’s not eating, that he is asleep and done with the day. That he is in bed for the night. He said this in such a manner that I knew it wasn’t open for debate or discussion. So unlike my George. It broke my heart.

It’s kind of alarming to hear George talk like this. He sounds like he has given up…on trying to get his nutrition through normal mean of eating, on takin this daily shower, on walking laps on the hospital floor – he just wants to lie in bed. And I know part of that is because of the pain in his mouth and throat and part of it is because the Compazine and Dilaudud make him drowsy. Also, he is at his lowest point with his blood counts… they are completely wiped out. That causes fatigue.

When I left, George said he hoped he would feel well enough to work the next morning. Yeah, I don’t think that’s going to happen. I kind of pushed him to work last week because according to everything I had read, I knew this was coming. So, I’m guessing this will be his 3rd week out of work (he actually worked 8 hours on Friday….somehow!). We shall see!

We both know that this, too shall pass. And once his donor cells engraft and start making new blood cells, his nausea, vomiting, pain and fatigue will start dissipating. Hang in there, George. You’ve got maybe 5-7 days left of this crap! You can do it! Team Blackwell forever!