To glow or not to glow...

What do you do when the best scanning technology coupled with the most toxic radioactive dyes cannot find a tumor?  You go home, of course...

I'm home from NIH a week early with mixed feelings.  I am of course glad to be home with our babies and sleeping in my own bed.  No one, especially a rut oriented control freak like me, likes being away from all things routine and familiar.  And living in a hospital for 2 weeks is never any fun no matter what condition you're in.  So yes, I'm very happy to be home.  But to receive that luxury means that I have to accept the flip side - we didn't find any hint of a tumor.

This is where there is disappointment.  But even that is mixed as well.  I didn't want to let myself believe that we would find my Cushing's tumor this trip.  I didn't want to get my hopes up.  But emotion sneaks in no matter how much the brain tells it to stay away and I'm disappointed that we didn't end this ordeal.  I'm frustrated that I have to keep going on every day taking medication and living in a body that is held together by chemistry and bailing wire.  I'm frustrated that Cushing's for me is an unending saga with no end in sight.  I plan, I figure, I foresee.  I do not "roll with it".  I am not one of those people.  I never have been and I am destined never to be despite the life lessons I am receiving right now. 

I'm also disappointed and frustrated that I'm disappointed and frustrated.  For someone with a chronic, rare and pretty catastrophic condition, I have the best doctors, access to an experimental medication that is working without destroying any of my other bodily functions, and a support system that keeps me going no matter what.  My life is very good.  And a trip to NIH reminds me just how good because I'm surrounded by people who are in very bad shape.  People who are dying or whose bodies are shutting down while I am bee-bopping from scan to scan, injection to injection.  I want to automatically feel lucky and blessed without having to think about it.  But I am human.  A fabulous, Princess-like human and it doesn't work that way. 

I must admit that a part of me is happy with the way the chips fell this time.  I didn't want to have yet another surgery.  I'm not ready to embark on another recovery process right now.  I'm finally feeling good after the surprise hip re-replacement of last summer and I don't want to have someone digging around my innards removing a microscopic tumor and spoiling it.  But in wanting that, I am dooming myself to continuing on the path I'm on - unknown.  In saving myself months of recovery, I'm giving myself months of medication, blood tests and longing for the body I used to have.

But now that I'm home, it's time to fall back in my routine and not think of another trip to NIH for a year.  I'll wallow for a day or so, then get back to the business of living remembering all those people who aren't as lucky as I am.