When the world is up in the air and nothing is certain but uncertainty, the experience of life becomes troublesome.  I was nervous before leaving Saint Louis for New Orleans.  There were so many pieces of the puzzle without guarantee.  I decided to make the best of whatever happened, I was going to New Orleans, I was going to live in the moment, no matter what happened.

The only concrete reality I had to work with was that the hospital confirmed they received all the medical records, scans and tumor slides I sent them.  This fact, this reality allowed me to relax and discover the anchor I needed to live in the moment.

A Conversation

When I spoke with the specialist I was excited, there was nervousness in my breath.  This increased as our conversation progressed, the more I asked the more uncomfortable I became.  It didn’t take long before I realized I had invested more into this doctor than the doctor had invested in me.

I inquired about my scans, labs and slides.  I thought he was going to show them to me, explain the findings and share the results, but none of that happened.  It was like he hadn’t read any of the reports.  My tummy churned, there was a certain pain inside of me, my gut was telling me he hadn’t read anything about my medical history.  So, I asked, and the answer was no.  He hadn’t read any of the information that was sent to his office from Saint Louis.  He hadn’t looked at any of the scans, tests or reports.  The doctor told me he wasn’t even aware that I had a Ga 68.

Thank goodness I had my medical history in my hand.  Had I not of brought my Ga 68 scan and other records he would have known absolutely nothing about my medical history.

It was heart breaking to sit beside this specialist, a person I had traveled hundreds of miles to see, only to be let down again.


What was the value of this journey?  New Orleans was a beautiful place, I have never been to such an enchanting land.  The significance of this trip was in the magical moments I spent with someone very special to me.  It was in the lessons I learned and the accomplishment of being my own health advocate.

Seeing a specialist isn’t enough.  You must take it to the next level, you must be the squeaky wheel, you must make noise! If you want to receive what you need, you have to talk loudly and walk with heavy steps.


Big Pile of Disappointment



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