In awe

Maybe I was delusional aout this whole leukemia process, but I had been thinking that I was following the protocols set forth from the previous years of research and treatment. 

You have AML, you get this chemotherapy. It works or not, or they try a different one.

But since the bone marrow transplant, I have learned it is so much more individualized. Yes, there are the standard medications that all transplant patients get to prevent infection, rejection, etc.

And I finally spoke up after about three weeks of gastrointestinal issues: maybe I didn't need to be on a certain antibiotic if there was no infection. Why was I taking a nasty liquid to quell upper respiratory distress that I didn't have.

And lo and behold, the team listened to me. We dropped some things with good success, and are continuing to hone in on what my body needs.

But the most amazing development for me was a report on my 30-day biopsy. At first, my doc said there appeared to still be some leukemic cells in the marrow. Oh that hurt -- other biopsies had shown remission. But he explained that the pathologist had taken my individual cell and put it through its wringers to find out what was really going on. It could be just immature or something else that could be good or bad down the road.

What amazed me was that was just for me. (A couple days later, it was determined to be innocuous, whew)

Even with that good news, though, came the judgement that the steroid treatment to ensure total engraftment is playing havoc with my blood sugar. So I get to start on insulin. Poking my finger 4 times a day is simply no fun. 

But we expect it to be a short-term problem. Weaning off steroids should set things back to normal in a month or so. 

There are likely millions of people who endure this for their entire life, and while some advances have been made, it is a complicated system. Somebody really needs to do user interface or usability studies to make it a lot easier. Massive instructions in tiny print do not work. We need pictures and step-by step how-tos..

After a couple of tries, though I was able to successfully test and dose myself. So I guess it's not that hard.

Now I just have to figure out sleep. My body is working very hard now to fix itself, and that keeps me awake (maybe it's on the time zone of my German donor!)

I'll try not to post my wild 3 am thoughts...