A Journey through AML

May 5th, 2024

Thus concludes a strange week.

On Sunday last, while feeling quite well due to the previous Friday’s blood transfusion, I encountered an experience completely foreign to me. In fact, it was so different from anything I had previously experienced, that I had difficulty describing it. It was a little bit like the feeling of standing up too quickly, a consequence of a sudden lowering of the blood pressure, but it was not quite like that. I wasn’t dizzy, nor did I feel faint, or pass out, which I had twice some years ago. But it was a powerful feeling that began somewhere in my mid-body, radiating out to my torso, then up through my head, and out to my shoulders. Oddly enough, it didn’t include my arms or legs. My mind remained clear, as though I were an observer rather than a participant. It lasted, by my estimate, about 30 seconds, a long time for such an experience.

Afterward, I felt fine, with no lasting effects. I had no idea of what the cause might be, or of the nature of what happened. This was late morning, and nothing else occurred until late afternoon, when I had another of these experiences, exactly the same in nature, but somewhat less in intensity. Since it was Sunday, I couldn’t call my oncologist, so I decided to wait until Monday. In retrospect, a misdirected decision.

I felt fine on Monday morning, except for the usual fatigue, and thought I might be done with it. But it happened again early afternoon, though again to a lesser degree. At that point, I called my oncologist, and his NP said to go to the emergency room of Christian Hospital. My daughter, Wendy, and I got there at about 3:30 and waited for about two hours until they called us in to take our information. Then we waited another two hours or so until they called us in to relate more details. Then another hour and a half or so until they brought us into a treatment room. We waited there for an hour or so until a doctor came in. He indicated that I needed to be admitted to the hospital to determine the nature of what was going on, as there was no indication of what that was. So, we waited another hour or so until they admitted me at about 9:00. They said I would probably be able to go home the next day after they did some tests to find out what was going on.

I had two more episodes on Tuesday, each one with a little less strength than the last one, but that meant I was going to be there longer than one day. I had another one on Wednesday, though it was light in intensity. They ran a multitude of tests over three days but couldn’t determine the cause of my experiences. Then, on the last day, an oncologist from the hospital visited me and confirmed what I already believed, that it was probably the chemotherapy drugs messing with my nervous system. Now, it’s a week later, and I’ve had no further episodes, and I feel fine, except for the perpetual fatigue. Which is a lot better than pain, nausea, and the like. 

On the plus side, they gave me blood while in the hospital, which made me feel a lot better, and the food was excellent. On the downside, they wouldn’t use the catheter I already had installed on my right shoulder/neck. They put another one in my arm and stuck me again every time they needed a blood sample. Which was pretty often. I told the nurse that if I somehow built up pressure inside me, I would look like a lawn sprinkler! Fortunately, they were all very good, and I rarely felt the stick.

I went home late Thursday after a few more tests were completed, and, except for the fatigue, I felt fine, and had no more events. It’s a beautiful day today, and I’m planning on getting out into the sunshine as soon as it warms up a bit. Life is an adventure, but I think I might choose something besides AML if there really is another go-around, and I have a choice!

Addendum: Late in June while at the monthly meeting with the doctor and with Wendy, my first-born, attending, she and the doctor began talking about the second hospital stay. I said, "I was in the hospital twice?" I had no memory of the second hospital stay. Still don't. Chemo does weird things to one's brain.

Friday, October 25, 2024

I continue to improve bit by bit. My immune system and platelets have improved to the point that I can trade in my picline with two ports hanging down from my shoulder for a small port in my chest, almost undetectable and held in place with, no kidding, Super Glue.

I was also informed (in answer to my query) that I had about another year to a year and a half. Oddly enough, I felt somewhat relieved at knowing what I had left rather than wondering about it. Now to access, consider, and decide.