Got Still

Talking to a friend (my one that left MI and moved to MD), I knew what I needed to do: get still regarding an issue and just listen, for as long as it takes, until some new insight or information arises to tip the balance one way or the other.

I believe that was Thursday. Friday, I got the results of Barry’s blood tests. The tests were ordered because of the whole process of elimination of possibilities for explaining Barry’s cognitive impairment (as if the Huntington’s was insufficient). At least, that is my understanding. I think four tests were ordered and I got the results of two: the B12 level and the folate level. The B12 was in the mid-500s, smack-dab in the middle of the 200-900 range. The folate level came back as >24. The normal range is 2 to 7.

My problem with “>24” is that it is not an actual measurement or quantity. “Greater than 24” can mean 24.1 or 68.9, or 156.2. It literally has no meaning whatsoever. What it says is, “Our chart only goes up to 24 because so few people have levels that high. This level is literally ‘off the chart.'”

So what does it mean? As far as I can tell, it is likely an indicator of advancing prostate cancer. It would make sense given the blood-in-the-urine incident from two years ago. I could be wrong. If Barry’s B12 was low, it would be a sign of pernicious anemia. So that is not it.

I wanted some new information. I believe I have it now. I emailed the physician’s assistant asking if the test should be redone. It would be nice to have an actual diagnosis, for purposes of me receiving help, but Barry has steadfastly refused to have a biopsy done. Given how painful I have heard they are, I can’t say I blame him.

I now suspect the reason the insurance company is dragging its feet is because they are waiting for Barry to die. I think someone looked at the “aspiration” diagnosis and realized that we are now talking about mid- to late-stage Huntington’s.

I believe things  are speeding up and I will need to land on my feet when he passes. The time for diddling around is over.

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About cdhoagpurple

I have an MBA, am married to a GM/UAW retiree with Huntington's Disease. I am more Buddhist than Christian. I plan on moving to Virginia when widowed. I have a friend''s parents that live down there and another friend living in Maryland. I am simplifying my life in preparation for the eventual move.Eight years ago, my husband had stage 4 cancer. I am truly "neither here nor there." My identity shifts and I am always surprised where I end up. 2015 was my hardest year ever. This is my Dark Night of the Soul. Welcome to it.

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