Diagnosis: Acute Myeloid Leukemia (AML). A Journey

George has been home from the hospital for 10 days now…seems kind of hard to believe! Our days are pretty much the same. We get up and have coffee, which George says doesn’t taste like coffee. Then I take our dog out for a walk before it gets too hot, at about 6:45 or 7:00 am. We walk for about 3 miles, or an hour. This is my “me” time. I enjoy being out in the outdoors and watching Chloe sniff everything in her path and roll in the grass. I usually listen to a true crime podcast through my earbuds while I walk. Meanwhile, George starts his day at work in the home office.

When I get back from my walk, we get George hooked up to his magnesium infusion (which will run for 4 hours) and then I make him breakfast and get him his morning pills.

On Mondays and Thursdays, a nurse comes to draw George’s blood and every Thursday, she changes the dressing on his PICC line. Then later in the day, a courier comes and picks up the vials of blood and takes them to the lab. It’s a pretty cool and convenient system! Friday is magnesium and supply delivery day.

On Tuesday, George had his first follow up visit at UPenn with nurse practitioner Jackie Smith. She gave us a lot of information – some of it was hard to hear. George thought he was tired from the chemo and radiation and that he would get less tired as he recovered. Well, Jackie told him that he would probably feel more tired next week. The fatigue is from the medication he is on, not from treatment he received in the hospital. So, no recovering from that. Then she said the reason his food tastes bad isn’t from “chemo mouth” but also a side effect from the Tacrolimus, which he will likely be taking for the next 6 months. He was not happy to hear that. Overall, he can deal with the fatigue pretty well. He’s actually working full days in the home office. But he gets extremely frustrated with his food tasting off and it’s a challenge to get him to eat sometimes. He also said he doesn’t want to gain weight. Jackie put the kibosh on that. She said his body is working hard during this recovery and he needs calories and protein. She said he needs to eat at least 1500 calories per day, but ideally 2000. She told him he burns 1000 calories just sitting in his chair for 8 hours working. (He didn’t believe that…I had to Google it and show him).

She also said the fact that George’s blood counts are back to normal doesn’t mean he has an immune system. Yes, certain white blood cells fight infection, but at the direction of the immune system. It’s like the command center and it’s shut down right now. She said he has the immune system of a newborn. As a matter of fact, he will have to get all his childhood vaccines again, starting in January. I mean, we knew that months ago, but I guess George needed a reminder. I think he expected to come home and recover like he did after his induction and consolidation treatments, but this is different. This is going to take time…and it’s going to suck for a while. His food is going to taste funky and he’s going to be tired. He also told Jackie he is cold all the time. She said that is normal and that basically his hypothalamus, which helps control body temperature, is shut down right now. That part of the brain keeps your body in a state of homeostasis. It also regulates appetite and energy maintenance, among other things, so that all makes sense – his loss of appetite and being cold.

So, it was kind of a let down for George. But we are reminded that this is a marathon, not a sprint…like his case manager, Annette told him back in December. Boy, was she right.

One day at a time….one foot in front of the other. Embrace the suck, cause it’s the only game in town right now…and for at least the next six months.

The good news, and reasons to be grateful – George isn’t nauseated or vomiting. He isn’t experiencing any pain. He is mobile. He is able to work. Thank God.