Days +9, +10 and +11

I'm bbbaaaacccckkkk! Well not exactly, but I'm posting again. I think sometimes things come up that I need to process myself before actually committing them here.

So to catch up...Saturday morning rolled around. The diarrhea I've been suffering from forever continued...but I had a revelation! Something topical would let me sit down a bit more comfortably...maybe. I asked the doctor about it during rounds; she said she'd get the stuff right up here...3 hours later, they bring up "Boudreaux's Butt Paste", a knockoff brand of Desitin! That's not what she promised; she'd mentioned a product that was loaded with hydrocortisone. Of course by this time, she's gone. I spoke with the nurse who, after finding another doc to write new orders, got me the good stuff. Interestingly, the diarrhea seems to be abating as well. For those of you who thought I shouldn't get back on the bike at all or should really back off, my butt will not be able to sit on that seat for awhile.

Also on Saturday, the morning lab work showed my platelets down below 10 (I have no idea what measurement they use). That's a trigger to get my first blood products. Yup, I was given a bag of platelets. It took them most of the day to get here; I'm type A- which is pretty rare. They had to bring it in from another state. I could possibly be the only ever amyloidosis A- patient.

Yesterday, I was told that I'm borderline on Hematocrit (HCT), a measure of how much oxygen your blood can carry. If it drops any further, I'll get some whole blood. This is a good thing since my energy levels have dropped quickly. Between the low HCT and the mask, I had to take a rest halfway during my mandatory mile walk (in lieu of the bike riding).

The good news is that the white cells have been bottomed out for 4 days now and, hopefully, should start increasing any day now.

I'm sure this low energy level is perfectly normal, I'm not used to getting winded just walking down a hall. It's a little depressing. As one of my nurse's said, "This too shall pass".

During one of today's vital signs readings(which happen throughout the day and night), my blood pressure was at an all-time low, 90/58. Although it always runs a little low, like 110/65, this seems to be a little radical...but it also explains why on occasion, I feel lightheaded if I stand up too fast. It's possible that the large dose of diuretic to remove the fluids might have overdone its usefulness. It's standard medicine for bringing down blood pressure which it seems to be doing very well.

On top of all that, my appetite, which I'm proud of, is giving out on me. In a way, it's a good thing as my activity level is down too. On the other hand, I think all my water weight seems to be gone. When I checked in, I was 185. Before all this started, I stayed around 165. This morning's weigh-in (they weigh us twice every day) recorded me at 165.

Alice is very good at thanking all you wonderful folks for the good thoughts and prayers you've been sending our way. I'm afraid I'm not so good at it; I think it's my independent streak that doesn't want to recognize my need for others. However, through all of this, I've been heartened by the cards and emails I've been receiving.People ask if they'd mind if I were put on their synagogue or church's prayer list. Absolutely not.

Last night, I and the nurse who got me the right butt stuff were chatting. Her father was a Baptist minister; He served at what is now the "Tabernacle" when it was still a church. She asked very nicely if I'd mind if she said a prayer for me. I never say no to something that might help, but was expecting something a little more fire and brimstone than I got. It was a very nice prayer...but I didn't expect it to happen that moment; I figured she'd say one next time she was in church.

Today I woke up to the smell of breakfast. I ate, got up and walked, showered and then realized I was tired. I closed my eyes and awoke to lunch and a phone that had been ringing for about an hour. I think I needed it.

Hope that catches everyone up. I'm discontinuing the bike chart for now. It'd be pointless to keep putting in "walked".

Jerry