Diagnosis: Acute Myeloid Leukemia (AML). A Journey

Day +2 wasn’t very eventful. At least that’s what George told me because I wasn’t at the hospital. I took a day off and went to Cape May for lunch at a winery and a walk on the beach with a friend. I know that once George is discharged from the hospital and comes home, I won’t be going anywhere for a good while. It feels like I’m trying to squeeze in as much summer activity as I can before he’s released!

On Day +3, I went to visit George and he seemed to be doing well. The last couple off days, he has been having some issues with diarrhea which is a normal side effect from the chemotherapy and radiation. We are both just thankful he hasn’t had any nausea or vomiting…yet.

His blood counts have taken a nose dive in the last few days, which of course we expected. His bone marrow is wiped out, so no production of blood cells. Once his new marrow engrafts, it will start producing blood cells and his counts will come back up. We are told that takes between 14 and 21 days.

While I was there, the discharge nurse came in to talk with us. I was surprised we were already talking about discharge when George isn’t scheduled to go home until August 1st! But from what she said, I think they want to have plenty of time to get insurance authorization for home infusion once he’s home.

We got a pretty good idea of what will happen once George comes home! He will be taking an oral dose of Tacromilus at home to help prevent rejection of the new marrow. Right now he is getting it through an IV. Because Tacromilus depletes the body’s magnesium, he will have to receive daily magnesium infusions. And I learned I will be the one administering them! Every day, I will have to hook up a bag of magnesium to George’s PICC line and it will drip for about 4 hours. And we will have to do this for 3-6 months, or for as long as he is on the Tacromilus. The nurse said they start backing off the med at the 3-6 month mark, depending on how each patient is doing. I will also have to flush his PICC line and clean it regularly. I am a little nervous about becoming Nurse Mary, but I have been assured that I will be taught everything I need to know!

The nurse, Kristie, also told us that George can expect to start experiencing more adverse side effects from the chemo/radiation later in the week and into the weekend. We have been expecting this and are bracing ourselves…George more so than me, of course! He wants me to bring him his work computer in case he feels like working while he is still feeling pretty good. While he is fatigued, he is not experiencing nausea or vomiting! Time off and sick days are a precious commodity!

We are thankful for the excellent and caring staff at UPenn. And when I visited yesterday, I saw that they had put me on the day’s schedule (GOALS/PLANS FOR THE DAY)! BTW….we think Dr. Frey looks like Tina Fey!