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Tuesday, August 24, 2010

Well, well. Here we are again.

Here we go again.  This is what I've caught myself thinking as I sit here at the B&W Hospital in Boston once again.  It's a hair before midnight on a Tuesday night, when the wireless network for guests here is the fastest.  Although much more prepared for this trip than last time, it still seems a little surreal that this could possibly be "actually" happening.  Long story short (I know I always say that, may be my fav phrase, although usually couldn't be further from the truth) everything we've done for the last 3 months was a completely useless waste of time (Yes, there are many great examples of a useful waste of time like blogging while your spouse gets chemo).  Decitabine couldn't handle the medical anomaly that is Lora Lee.  She walked through chemo as if it were simply a much needed nap time in the middle of the day for a week a month.  I knew it.  She knew it.  The crap wasn't doing anything but costing Aetna $2,666 per day.  Lora's blast count didn't budge.  It didn't increase, which is a good thing, but it sure as hell didn't go down.  Of course not, especially considering that they only did 2 cycles.  Even the genius that is the FDA recommends a minimum of 3 cycles for effectivity.  Dr. Alyea said "getting remission prior to transplant provides better outcome".  He then said later, "you want to have as little chemo as possible, and a little MDS is OK for transplant", subsequently terminating chemo cycles and begins to schedule a transplant.  So the pre-transplant BMB shows no change in the blast count, and what, do you ask is the solution?  More chemo to reduce the blast count.  I know, really??  Now, as anyone (if there is anyone) reading this knows, I don't have a PhD, but there seem to be some contradictions in logic occurring.  I'm sure if I were to find out this guy is rushing our transplant schedule so that he'll be free to make an appearance at his Georgetown High School reunion in the fall, I'll likely go on a shooting rampage.  Oh yes, I have guns, as I too, dear sir am from Kentucky.  Enough about me and my over-use of commas.  This is day one.  We're already a little bored.  Lora has a much greater ability to sleep in strange places than I, and I have a feeling I'll be a zombie in a few days.  I recently pulled an all-nighter in Atlanta, GA on a business trip and learned that I do not still have the ability to function on little to no sleep.  Lora is sleeping now with one clear and one blue tube pumping some pretty nasty poison (Cytarabine) into her hickman line.  A E-friend of hers recently informed her that she is now at (roughly) 99 days post BM transplant and doing well.  I think it was somewhat comforting for Lora to know someone else came out the back end only slightly worse for the wear.  What's comforting for me is to know the boys are safe and sound in their beds with Cecil and Loretta acting as surrogate parents while we take care of business.  I know the boys will stretch the bounds of their reality a bit in our absence and require some "retraining" upon our return, but it's a small (miniscule actually) price to pay for the advantage of having ppl who love them caring for them on our stead.  Anyway, our time here will truly test the mind occupying capability of an iPOD touch, Nook, Samsung Rogue, a Droid and a couple of laptops.  I've finished 3 soduku puzzles (medium) and lost about 10 chess games to the Droid 2 and typed one blog post.  Also, the Droid's lie detector app clearly proved Lora regrets the day she got involved with the likes of yours truly.