Saturday, October 16, 2010

And The Beat Goes On

I was a big Sonny and Cher fan when I was a kid. As the calendar advances, I try to remember that, although the beat may not be changing, it does go on. Today is Day 31 in Treatment World. It usually takes about 25 days get someone with relapsed AML back into remission. Although Day 14 brought me great news that the chemo destroyed my diseased bone marrow, the next step is recovering healthy bone marrow so that a complete remission can be confirmed. Due to the damage that each treatment brings, starting with the first leukemia treatment last October, my marrow takes longer and longer to recover. That isn't the case for most patients, but most patients don't have problematic bone marrow due to chemotherapy 10 years ago for a different type of cancer.

So I wait, and wait, hoping that my counts come up soon so that I can go home before the transplant. If they don't, well, then I'll stay here through the transplant process, which could be another 6-8 weeks. I spoke to one of the transplant doctors today and she said that this situation won't threaten the success of the transplant at all. It does, however, leave me at risk for two things: 1. infections due to low blood counts, and 2. the loss of my sanity!

I'm getting transfusions of blood and platelets about every other day, as well as a drug to stimulate the return of my white blood cells, but I still haven't had the usual spike that typically happens by now. That could change any day, and I pray that it does. But for now, it's status quo.

That's not to say that the last few weeks have been without drama. I contracted a pretty wicked rash as a side effect from the chemo that looked like measles on steroids. Then I had a bad allergic reaction to a platelet transfusion. I always wondered what the Rapid Response Team did. Now I know. Lots of people doing lots of things all at once. Now when I need a transfusion, I get special platelets with lots of pre-medication.

And more drama: I may have mentioned that, in mid August, two of my cousins and I went to Arizona to move my dad into an assisted living facility because of progressing dementia. This was a huge feat, since the search for a facility, wading through Medicaid applications and assessments, and the move itself had to be coordinated from New Jersey. The day after I returned from the move, I had a routine biopsy, which is how I learned that I had relapsed. A little over a week ago (less than two months since the move), the assisted living manager called to tell me that Dad is sleeping all day, not engaging in daily activities, and may have pre-pneumonia. A trip to the hospital and lots more assessments indicated that, for his health and safety, he needed to be moved into the long term nursing center on the campus. Thankfully, with the help of numerous understanding staff members at these facilities, we were able to move Dad seamlessly, and he is doing much better. He's in good spirits and responding well. And because he's such a sweet, gentle soul, everyone loves him. I'll have his things packed and moved into storage next week, and by the time I have the transplant, I'll have peace of mind that he's completely taken care of, which will help my stress level enormously. It's funny how the timing of these events happened. Had we not moved him when we did, I can't imagine how things would have turned out.

Reading over this post, it sounds a bit depressing. So let's focus on the good news:
* Although a donor hasn't yet been found for me, my doctors are very optimistic that one will be found soon. This process typically takes 3 or 4 months, but they're hoping to speed it up, since I'm stuck in limbo land.
* I'm not sick with anything right now. If I can stay that way, I'll get through the transplant as well as anyone else.
* I'm getting really great care, here in Hackensack.
* The miners in Chile have been rescued! This story had been driving me crazy. Must have been something about being trapped and having no control.

Hopefully, I'll write my next post from home and a donor will have been found. I'd love to spend some time with Sadie before Mary moves her to Pittsburgh to live with her family for the next few months, but that would have to happen within the next week.

So far, things have gone well for me. At this point, I'm not willing to settle for anything less, as the beat goes on.




  1. You are doing an amazing job with keeping your spirts up and, as you put it, not losing your sanity! Glad your dad is getting good care now. Hope you hear soon on a donor and the beat goes on! Julie

  2. I mailed in my swab kit a few weeks ago. I don't know exactly how long it takes for them to type the tissue and whatnot. -krystina

  3. Krystina - Since you joined the Registry, it may take awhile. But you will still be caught in the search for my donor. When you get your results, just fax them in to my Case Manager. Thanks!


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