Wednesday, May 12, 2010


I hate when I get no for an answer.

Not much different from childhood.

No, you can not do the two trials, for two different but very stupid reasons. I don't live close enough for one, for the other because I am on a mild BP med. My blood pressure is great (100/60), but that doesn't matter. You complain how it takes years to get enough volunteers. Huh?

No, you can not attend this cancer conference because you are too late to register. I had to wait to get OK from a few people, but by then the conference was full. A full conference? Can't they add a chair in the big ballroom? Don't they want my money?

No, you can not go three weeks between IVig because your platelets start to crash. 54,000 today, down a full 190,000 from when I got the infusion. Not long ago, I had gone 19 days with no problem, but my attempt to reach for a 21 day interval, a full three weeks between having to face the reality of my CLL/ITP by spending a day in an infusion chair, caused a drop to this lower worrisome level. 54,000 is still very safe with no spontaneous bleeding risk, but for how long? Would it have been in the red zone , the single digits again if I had waited even a few more days? That is not a place I want to revisit.

What does it mean?

Could mean nothing. I had a much lower drop in the fall that was just an aberration.

Could mean I simply need to keep the intervals shorter between treatments. No biggie.

Could mean the disease is picking up steam. That's bad.

The working plan is to shorten the interval back to 14-17 days, check my blood in a week, do a flow cytometry in two weeks to check for cancer in the blood - I also have too many atypical lymphocyte- and just see what the trend is for my platelet and atypical lymphocyte counts before getting too panicked. This is all subject to change, depending on the next set of blood results.

It has been a frustrating week, and I don't feel much like writing.



Blogger Dragon Slayer said...

Thanks for letting us know. Frustration is part and parcel of this nasty disease. Also something lurking in the bushes ready to pounce. You always have your arsenal ready at hand.
Blood tests aren't always our friend or accurate.
Hang in there-sunny days ahead I hope

May 13, 2010 at 6:57 AM  
Blogger Alison said...

A little negative, Brian - stay calm, meditation?

Best to you and your family!

May 13, 2010 at 7:14 AM  

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