Friday, May 28, 2010

Hangin' in there

My blood counts in San Diego were truly worrisome. My white count, which had been recovering more or less from the end of treatment, dropped a bit a week before the SD trip. In San Diego, it took a huge drop, overall from 2.5 to 2.0 and then to 1.3. My absolute neutrophil count, though, was hovering over the magic 500 cut-off. I think it was something like 680.

I try not to take Neulasta or Neupogen unless I am in danger. After my first treatment with HDMP+R, my white count went down to 0.0. That's probably a false number, since I understand that in most labs, anything under 100 or so just leads to false readings. But I did end up spending four unpleasant days in the hospital, with a temperature maxing out around 105. Very dangerous territory.

A couple of years ago, after HDMP+R, but before ISF-35 and the hated FCR, my neutrophil count dropped to 103. The nurse apologized to me, saying he was sorry my count was low. I thought that was a bit weird, but maybe he thought I might not be around much longer. It's been two or three years, so luckily that never happened.

I was very worried that my counts would keep on dropping, so I had a CBC on Monday, five days after my last test. My white blood count bumped up to the usual low, but better, level of 2.5. My neutrophil percentage is at the normal (for me) level of 50%, so I'm OK, and don't need a $9,000 Neulasta shot.

I wonder how long that will be available for me? (Though the thing I really worry about is the IVIg, which is hellishly expensive, about $16,000 a month. My insurance pays for that, at least for now, but as time goes on, and government health care kicks in, this may go quicker than a dollar bill on a New York sidewalk (sorry, just made that up, though I'm probably not the first to use the saying)).

How do I feel? I was feeling fatigued and kind of low around the time of my SD trip, but now I seem to have rebounded a bit. I'm back to work full-time, and trying to salvage some folders (paper) that have mysteriously disappeared. What a pain to have to do over what you've already spent weeks to do previously!

I am going to retire this July, after 36+ years on the job. I can't really afford to, but my CLL is not going to let me go, apparently, so I just have to draw the line somewhere. I'll be 60 (the big 60...bummer!).

Unfortunately, like many CLL patients, I'm too sick to travel much, and the impaired immune system won't let me go to the places I'd REALLY like to go to, such as Mongolia and Vietnam and places such as that.

My advice to you? Travel now while you still can! (The crash has left me pretty broke, and that factors in as well.)

Memorial Day is upon us in the States; I'd like to have a picnic. Our tomatoes are coming along, and our peas are just taking off with the warm weather. Unfortunately, they won't be ready by Monday, but hopefully soon!


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David Keating
Department of Communication
University of Arizona

George Lee said...

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maybe its useful to you or others. tq.