Diagnosis: Acute Myeloid Leukemia (AML). A Journey

Hard to believe, but George will be admitted to the hospital a week from yesterday for his allogenic stem cell transplant. We have been moving towards this day since January, it seems, and now it is upon us. It is both exciting and terrifying, as I explained in the previous post.

A couple of weeks ago, George received a binder in the mail chock full of information for his upcoming hospital admission as well as instructions for once he comes home. We were both required to attend a 3 hour virtual class yesterday to go over all the info in the binder and we did. There were 4 other patients in the class with us, each preparing for their transplants, but each having an individualized treatment plan prepared by their doctor.

The first part of the class focused on visitor guidelines. COVID vaccine or negative COVID test required for visitors. Check.Like George, I am vaccinated and boosted twice. Visiting hours 9:00 am to 8:00 pm with no overnight stays. I have never stayed overnight with George because I always had to get back to take care of our dog, but I was hoping to have that option this time because this chemo/radiation regiment is more intense than anything he’s undergone and he might need me. Also, this time visiting will be different in that I will have to wear a gown, mask and gloves any time I enter George’s room. That’s because he will be severely immunocompromised and susceptible to infection and he will be in “Allo isolation.” Even he will have to wear a mask, gloves and gown any time he leaves his room, like to walk around the floor for exercise or visit the “nourishment room” for a snack.

We then moved on to admission day. He is not to bring any toiletries, such as shampoo, body wash, toothbrush and toothpaste, but use the specialized ones they provide. Hibiclens, a strong anti-bacterial body wash will be provided and a super soft toothbrush, which has a much lower chance of causing gum bleeding. The Hibiclens is pretty strong and can cause skin irritation. If it’s too much, Dial Antibacterial soap is the only acceptable alternative. So important to prevent bleeding when George’s platelet counts are extremely low, as his blood may not be able to clot.

He will have to shower every day and put on a clean set of clothes every day…no wearing anything two days in a row. This is to cut down on the risk of infection from bacteria or germs. So, he will need to have 7 days of “outfits” when he checks in and I will have to wash those clothes in hot water and dry them on high heat every 7 days or bring more clean clothes. He can wear a zip up hoodie, but it must be washed once a week. Same with sleep clothes…I think he will just wear a hospital gown at night to make things easy.

George can bring his own pillow, but it will have to be freshly washed or brand new in the bag. I just bought a new one – a nice memory foam one! He has to use their pillow cases though. Hospital pillows suck and he is going to be in there for about a month. I remember the pillows when he was in MD Anderson for a month in January…they were like a waterproof plastic and they kept sliding out of the pillow case!

George is not allowed to bring nail clippers. He is not allowed to clip his own nails, for fear of cutting himself and bleeding. They will take care of that for him in the hospital if need be. He’s not allowed to bring deodorant or razors (electric are ok), but he can bring gentle lotions. He will likely need this because the antibacterial body wash and the TBI (total body irradiation) will do a number on his poor skin…drying, burning, it will probably turn pink. UGH. Hard to think about.

He is encouraged to bring personal electronics, such as a phone, laptop and tablet. He is hoping he will be able to work while he is in the hospital, but I think it’s realistic to think he will have to take off work for at least two weeks. The chemo and radiation will wipe him out pretty quickly. Weird, he is not allowed to bring a surge protector, which is rather essential for his work computer. We may try to sneak one in. Don’t tell anyone I said that.

This week, George will be completing the prep work required before admittance. He has a consult appoint with the radiologist on Wednesday, as well as a COVID test and on Friday, he will go in and have his Hickman catheter placed in his chest.

It’s all becoming more real every day and George does suffer from moments of intense anxiety and he gets weepy at times. All normal, I assure him. This is huge. I mean, really huge. It’s scary to think that his conditioning treatment is so harsh, it completely wipes out and destroys his own bone marrow. So, if his new donor stem cells don’t engraft in his marrow, there’s nothing that can be done. He will just be marrowless. Terrifying. The doctor feels very confident this won’t be the case. And we have to feel the same way, or I don’t know if we would be going through this. And the concerns for what happens after he is released from the hospital – the next 6 months- are real as well. Will get into those later.

Yesterday, we attended a small blueberry festival near our home and today, we are going out to brunch at one of our favorite little cafes. So important to savor our last weekend of normalcy and freedom.