What's next?

3pm: update at bottom

Status

As far as the leukemia goes, I'm healthier than I've been in a long time. I feel good. I finally seem to have gotten rid of the water weight from the steroids. I'm regaining my strength and stamina. My vision seemed to have changed while I was inpatient. It might have been a side effect, or it might have been never looking more than ten feet ahead; that seems to be improving today.


Treatment

I've completed the first of six rounds of chemo in this treatment cycle.

That accomplished the goal of destroying and flushing out the defective lymphocytes that were overwhelming my system. We put out the fire.

I need five more rounds to suppress the cells that are turning out bad lymphocytes in the first place. That will be seeking out and suppressing any hot spots.

Each chemo treatment will destroy my immune system, so for the next four months I will cycle between feeling great and having few limitations and feeling awful with many limitations. We don't know to what extent the side effects of the treatment will return. Although we don't expect them to ever be as bad as the last two weeks, we can't guarantee that. I may require hospitalization again. Because of my underlying auto-immune disorders I will almost certainly require red cell transfusions every cycle.

Each cycle will consist of a treatment, a period when my blood counts are falling, and I am most vulnerable, a period when they are rising, and a recovery period until the next session.

My next session is scheduled for next Wednesday, February 4, 2009. Now 2/11.


Game plan

I have a lot to do this week.

I left the hospital with more medication and protocols than I've ever dealt with. I need to establish routines and a tracking system to ensure that I protect my health and get the full benefit of the treatment. I need to become confident as an insulin dependent diabetic. I need to establish a little clinic area where I can organize my new supplies and assess and track my status, so that, when I'm sick and vulnerable, I can recognize the need for intervention right away. And I need all of these in place before my next treatment.

While I was in the hospital my friends did an absolutely amazing job of damage control. They removed the garbage and fresh food, washed the dishes, took the laundry home and returned it, took things to me in the hospital, brought them back with me. I cannot imagine how different yesterday would have been without their help, but it wasn't obvious where everything lives. I need to put things away.

The week before my admission I spent most of my time in my recliner. I felt well, but I had absolutely no stamina. (Funny what the absence of red blood cells will do!) The six weeks before that, as I dealt with increasing fatigue, I left routine things undone. I need to clean up and put away things I left lying around during that time.

Then there's the mail. Piles of mail. Bags of mail. Some of it is probably important. And I need to set up a system for the many, many bills I expect to receive.

None of that even touches recovering from the involuntary "upgrade" to my apartment last July. My office is unusable, but as my strength failed, that just wasn't at the top of the list.

More important than those last two, however, is the need to rebuild my general strength and wellness. Between the problems from my neck injury and the fatigue of the leukemia, I've lost a horrendous amount of general conditioning and fitness. My neck is fixed, the leukemia is being treated...I need to begin reclaiming lost ground.


So here's my plan

I've laid this all out, hoping to answer the questions many of you have about the next few months of my treatment.

I plan to spend today and tomorrow establishing the physical space and routines for my medical needs. I will begin incorporating a general fitness program, as well.

I plan to spend the rest of this week putting things away.

I plan to spend early next week putting things in place for my next treatment cycle: clothes, food, etc.

And I don't plan to spend a lot of time here.

We'll see how it works.

Update: It doesn't. The kitchen needs to be done first, so that I can easily prepare meals, and everything is going to take longer. I've had to go back to preparing meals as I did when my neck was bad, one step at a time, sitting down. When I was only halfway through preparing lunch, at 2:30 pm, and exhausted, I ate last night's leftovers.