This is just a notification that I am still alive and will turn 57 in July. The only medication I am taking is 2.5 mg of Prednisone, which is a very tiny pill. I suspect I could quit, and nothing would happen. I see Dr. Reddy to follow up on my lymphoma once per year, and I see a Nurse Practitioner named Melissa on the same or next day to follow up on the leukemia/BPDCN. Melissa is dropping the prednisone dose slowly because she said she doesn't want to "crash my adrenals." I suspect in January she will drop me to 2.5 mg every other day, then end it in 2020.
The lingering effects are that I don't have the energy I had before the leukemia, lymphoma, and the 9-month neutropenia that came after the lymphoma. (I think the 9-month neutropenia had the worst effect on me.) Getting back in shape is hard, and if I over-train, I get intense fatigue that can last for an extended period of time. Still, I am making slow progress. I can run a hundred-yard dash, which feels like sprinting, but would have been a jogging pace in high school. It takes 25-seconds to "sprint" that 100-yard dash. One of my workouts is to walk/run a mile fitting in about 5 or 6 of those 80-yard dashes. (I have 80 yards measured, not 100.)
On the other hand, I can walk miles. My feet hurt when I do, sometimes a lot. I've tried a lot of shoes, but nothing seems to help. My blood pressure and heart rate are good, but my cholesterol is terrible despite the fact that I have an excellent diet. On the other hand, I gave myself a heat stroke mowing the lawn for 45 minutes in July in Tennessee (90+ degrees and humid) wearing sun-protective clothing. The hospital gave me a thorough checkover because of this, and my arteries are clear. The cholesterol is not affecting my blood flow.
I can work as much as I want without tiring, but I have a desk job. Some days--but no mornings--I am bursting with energy. Other days I am not. I suppose that's pretty normal.
Oh, one more important thing: chemo and the nine-month neutropenia trashed my memory. About a year ago I heard that sage (the spice) improves memory. My wife had some sage tea ("Relaxed Mind" from Yogi), and I decided to give it a try. Success! Success! Success! Very noticeable improvement!
The cognitive test for whether the sage tea was working was a chess game on my phone I used to play. After the cancers, I played against it, and I had to keep lowering the levels. At some point, I got tired of being beat, and I quit playing. After a few weeks of sage tea, I opened the game again, and played it at the level I was losing at, and I won three games in a row. I am very excited about this, and as I said, the memory and clear thinking improvement is noticeable. One cup of sage tea a day. Who knew?
Not to go overboard with that, I am 57, and I seem to have the same sort of memory problems all my 50-some-year-old friends have. I can't think of words and names as well as I used to, but I'm no worse at that than my friends.
That's my six-year and four-month post-transplant follow-up.
I’m so happy you’re alive! My mom is also doing great after having BPDCN she only has to go to Sloan once a year for check ups! I will Tell her about the sage because her memory is also pretty much trashed. I’m glad you are thriving :-)
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