August 14, 2011

storm clouds

     The heat is oppressive, even for a Houston August.  Concrete under the rays of the sun could cook an egg on an afternoon such as today.  No hope of even a drop of rain is in the forecast.  Yet my soul has been overcast with dark and sullen storm clouds.  About what, I do not know.  Perhaps the loss of my brother?  Common sense would say, yes.  That would seem rational and so I thought but deep down I should've known that it had nothing specifically to do with the loss of my brother.  Deep down, the next storm is about the possible loss of my dad.  My dad has remained stoically optimistic about his prospects.  It's in his nature to believe that things will work out.  But that optimism just wouldn't line up with my gut feeling, though.  Deep in the recesses of my bowels, I knew that 10-15% mortality couldn't be the whole story.  Something was missing.  My gut was telling me that storm clouds were brewing on the horizon.  How many and how big?
     Recently in the news, there has been much hype about a therapy for my dad's disease, CLL.  My dad had seen it on tv so I was obligated to track it down and research it.  Pretty remarkable stuff and very intriguing.  And as I read more, I came across this quote about CLL and stem cell transplant from, "Cure is possible, but it requires a risky bone marrow transplant. About 20% of patients don't survive this treatment -- and even when they do, there's only a 50-50 chance of a cure."  Wait, what?  If no cure, then my dad is dead.  50-50?!?!?  What's the real survival rate for this procedure?  From what we were told by the stem cell doctor, I thought it was 85-90%?
     Into the early morning hours I combed the literature and from what I could gather, the odds of being alive 3 to 5 years after a stem cell transplant for refractory CLL is roughly 50-60%.  Only slightly better than the flip of a coin.  As I searched my memory, I did recall that the 10-15% referred to the initial procedure, the first 100 days, most likely.  I never thought to ask long term outcomes.  Why the doctor did not volunteer them isn't clear to me.  Maybe he didn't want to hit us over the head on the first visit.  To give him the benefit of the doubt, we had another appointment with the stem cell doctor but had to cancel due to the dying of my brother.  But still, an informed patient is a better armed patient.  False hope and sugar coating things does NOT help.  Note to self, ALWAYS be honest with the patient.
     So, we are faced with the looming questions, what exactly are the odds for my dad?  Is what I gleaned from the literature correct, or am I misreading the situation?  Has the procedure dramatically improved over the past few years?  Surely, it must vary according to disease and health status, but how does that relate to my dad?  On the flip of a coin, could I lose both my brother and my dad in just a few years?

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