Monday, December 29, 2008

"Tell me why it is hard to make arrangements with yourself" Neil Young

Communication breakdown,
It's always the same,
I'm having a nervous breakdown,
Drive me insane!
Led Zeppelin

What's new you've been asking?

You've heard it before. 

Nothing. Nada. Rien du tout. Bupkahs. 

Stillness is not my strength. 

Add to that a communication breakdown and it makes for a frustrating frozen moment. My insurance authorization for my appointment at UCSD was fumbled on the two yard line. In the fourth quarter. With one second left on the clock.

My scheduled appointment for a second opinion on a second transplant is suddenly on hold after office hours on the day before the appointment, waiting for a last minute paperwork reprieve that would allow me to keep the hard to get chance to see the double agent, Dr. Castro, who moves with grace in both the world of CLL and transplant medicine. A rare man in deed. I need his take on the advisability and timing and risky details of second dose of a stranger's stem cells. Or goosing my immune system with lenolidomide, the princely stepchild of thalidomide. That certainly would be entering unknown territory. Or other options I haven't even considered.

There is still a chance I will get the go ahead tomorrow.

In reality, nothing will be decided until the computer that controls an x-ray unit is used to slice through my gut, and using complex algorithms reconstructs my interior geometry. Moving nodes that are less than a half an inch across to begin with will be scanned for any change.  Not by inches, but by millimeters will my future be decided. That CT scan won't happen for another month.

In Vegas, I would be a card counter. I want all the edge I can get.  I want to know what is knowable. I want some to time to compute the odds and then make my move. 

I should still get the information and time I need. 

I am just not good at waiting.

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2 Comments:

Blogger rpassananti said...

Sorry to hear about the insurance set back. Right now I am sitting in Dr. Castro's office waiting for my 8:40am appointment. I will tell him you said hi!

December 30, 2008 at 7:41 AM  
Blogger Judy Cleri said...

WAITING.........ARGHHHHHHHH....

If they only knew the agony we put ourselves through waiting for their approvals......I think insurance companies would be so much different. Praying that you get the approval you so desperately want.

May 2009 be the best year of your life and it seems that you have had some really good years, so I can hardly wait to see what happens in 2009.

Happy New Year. Take care Dr. K. We can hardly wait to get you back where you belong.

J

December 30, 2008 at 10:19 AM  

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