Day +10

I woke to a canker sore that had exploded just below the inner lip at the front right-side of my mouth and to a tongue that felt like it had been rubbed with sand paper on the sides. And the top of my throat had also joined in the chorus of pain. Once I was finally awake I also realized just how tired I was. That’s more or less been my condition for the day.

I tried to ride the bike, but after 15 minutes I started to feel dizzy and weak, so I stopped. I received a red blood cell transfusion today, so my energy should improve tomorrow.

The doctor tells me that the mouth pain is just part of the process. It often gets bad enough that patients go on a 24 hour morphine drip. I guess that’s one way to relax, but I hope it doesn’t come to that, as I imagine that it makes reading and writing more challenging. The mouth pain will remain, I’m told, until the immune system becomes strong enough to fight back. And I learned that the first evidence of white blood cell production for patients with myelofibrosis is typically about a week later than for patients with leukemia. So, I shouldn’t really expect signs of success until about day +21. Sadly that’s still a full 10 days away.

Dear friends C and K arrived today all the way from Long Beach, CA! They are here to play my normal role of house-elf. They are following two other friends; the first to come was I and then D. All of them have come a long distance at considerable expense to help out. How very big-hearted and sweet!

I used to say that when men a half a generation older than me would retired, they would often grow pony tails as an expression of their freedom from professional norms, but that when I retire I intend to dye my hair blue. Shortly before entering the hospital I decided to go blue before I lost it all. So, for several days before I entered the hospital I walked about town with neon blue hair. MF found this pretty embarrassing, but he tried to be tolerant of my eccentricities. The night before I was admitted to the hospital I cut my hair very short. Two weeks of washing it with high octane germ-killing soap in here turned the color to marine green, and then finally mostly to the underlying bleached blonde. Now, however, the shedding has begun in earnest. This morning my nurse informed me that tomorrow would probably be shearing day.

 

Day +11

Day +9