Wednesday, September 21, 2011

Sept. 21: My Schedule

I thought today was going to be the first day of fall, but apparently it's September 23 this year. Oh, well, the picture's great anyway, so I'm still going to use it:

I've been asked several times over the last three days what's happening with me. Here's the plan and schedule as simply as I can put it.

The schedule can't be certain, but the nurse practitioner said this is a possibility. It's pretty likely that the transplant could be a week later, and possible that it could be two weeks later.

Tentative Schedule

Rest of September – Recover from the "consolidation" round of chemo.

Oct. 3-7 – Be tested by the transplant team so they can make a plan. They have to make sure I'm healthy enough to endure the intense chemo preparation. This will be done on an outpatient basis, but will take a lot of time.

Oct. 10-14 (in hospital) – I'm guessing this is the week they'll give me the chemo. They give a lot of chemo in a short time for transplants. Very potent. It's possible the chemo could last just 3 days, yet still wipe out my bone marrow, before they give me the stem cells.

Oct. 14-31 (in hospital) – If things go really well, this will be the time that the stem cells engraft. My immune system will be nil during this time, and I'll probably be having transfusions every day. This is a very dangerous time, so they hope for it to be as short as possible. It can take as little as 14 days and as many as 30.

Or Oct. 14-Nov. 14 (in hospital) – If things don't go so well, this is how long it could take a grow a new immune system.

Nov. 1 (or 15) - Jan. 31 (outpatient) – The approximate time frame I have to stay near the hospital and have daily or every other day checkups. The risk at this time is that the new immune system will reject my body (the opposite of organ transplants). This is called Graft-vs-Host Disease, and it can be fatal, but usually isn't. They use drugs to suppress the immune system to get the GVH to back off.

The doctor's very difficult job is to suppress the immune system enough to prevent GVH, but allow it to work well enough to kill any leukemia cells that might have hidden out and to heal the patient (me) from the ravages of chemotherapy and two to four weeks of inability to heal or fight infection.

Feb. 1 - end of 2012 – Apparently, the new marrow and immune system get used to my body over time. How much time varies. Six months to a year is the typical time. If GVH arises during this time, it's usually in the form of rashes. It gets controlled with drugs so it doesn't progress and attack organs.

The other problem over 2012 is going to be fatigue and lack of energy. Some transplant patients say it takes years to be able to do a full day's work. Others seem to have regained good energy quickly.


My goal's to run a 5K with my wife by summer, and a half marathon with someone next fall.

Of course, that reminds me of a comment by a 67-year-old man who was running the Badwater Ultramarathon, which is a 135-mile run from the lowest spot in the U.S. to the highest. The lowest spot is Badwater, California in Death Valley. The highest is Mt. McKinley, also in California. The race is run every year in July, often on my birthday, and the temperatures vary between 100 and 135 on race days, though it's a little hotter on the highways they run on.

This 67-year-old man commented as he was walking down the road. I'm quoting from memory:

You always start with these really high goals, like finishing in a really fast time. As the race progresses, you refine those goals down until you reach the point, which is where I'm at now, that your goal is simply not to throw up on your shoes.

So, with that in mind, I'm okay with setting high goals right now.

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