April 1, 2011

hope vs fatalism

"What does 'H' mean when it's next to a number?" my mom asked.  She was reading the printout of my brother's bloodwork.  In my mind, my reply is 'ask me no questions, I'll tell you no lies.'  But she asked, so I respond in as short as an answer as possible hoping to derail the conversation. 
"It means 'high'...."

My brother chimes in, concern in his voice, "which value of mine is high?"

"One of the markers of cancer.  It's been high for a long, long time."

I need no bloodmarkers to discern the ailing status of my brother.  They merely confirm what mine own two eyes can readily discern.  He is in pain.  Badly.  His voice quivers, not with emotion, but with the effort of trying to master words.  His platelet count did not recover anywhere near enough to receive the next dose of Gemzar.  To further complicate matters, he started having numbness on one side of his face.  It follows a very distinct nerve pattern (the V2 part of the trigeminal nerve, it's the reddish color in the picture below).  That can be due to one of two things.  It could be due to inflammation of the nerve root in the form of a viral infection, or a tumor which is compressing the nerve.  He's also experiencing some pressure behind the eyes and decreased taste sensation on the same side of the tongue.  So my brother will receive an MRI of the head and neck to determine the cause.

The results of that scan will determine the future course (we will probably know by Tuesday).  If it's a tumor(s) in the brain and/or neck, they can attempt to irradiate it.  Radiation is really the only option because most chemotherapies do not cross into the brain very well.  That would then potentially be followed up with chemotherapy.  If neuritis (inflammation of the nerve), then he will attempt to receive a different chemotherapy from Gemzar next Thursday.  And you may notice that I qualify that with 'attempt' because nothing is definitive at this point.  What that chemotherapy would be and how it would be given  is not entirely clear to me but that's because it's not entirely clear to the doctor.  We're off in the hinterlands for which modern medicine has no good guidelines.

Which leads me back to the question my mom asked.  What does that high number mean?  I struggle to not be the thief of hope because it's all my family has going for it right now.  But I also wish to remain honest and the medical model has very little hope left to offer at this point.  That question may be better put to a spiritual counselor.  So in reality, I have no good answer.

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