The Great and Powerful Oz

A year ago this past week, I traveled to see the Great and Powerful Oz, aka the country's expert on Carcinoid cancer. I was supposed to have surgery in PA on July 22, but instead I got on a plane, something I said I would never do. The idea of flying seemed less scary than having surgery.


I was very spooked about the surgery. It was booked so quickly. The date was selected on a day I didn't like. And the weeks leading up to the scheduled surgery seemed like a funeral. People came to visit me, and it seemed like they were saying their final goodbyes. Nothing about it felt right. It freaked me out, man. 


So as I drove home from my sister's hotel on July 11th, I decided to listen to some music. Florence + The Machine was the disc in my player, and Rabbit Heart was the song. 

Here I am, a rabbit hearted girl

Frozen in the headlights

It seems I've made the final sacrifice

I must become a lion hearted girl

Ready for a fight

Before I make the final sacrifice

I knew as I drove home that I needed to see Oz before my surgery. I needed to be sure. I called and canceled the surgery the next day.


So, we flew to see the Great and Powerful Oz. He was as great as everyone says. He had zebras everywhere. His staff was AMAZING; the opposite of what we had encountered so far. He was jovial, knowledgable, and made you feel you had made the right choice.


He also ordered 3 more tests for me to have before they would perform surgery. I was under the impression that we were pretty much there to set a surgery date. I had sent records and records and more records to his office. He knew all about me. But he wanted me to have a 3D CT Scan, a biopsy, and a colonoscopy. If he wanted me to have those tests, he could have told me that before I flew down there. He didn't need me in his office for that. And that stuck in my craw.

Pay no attention to that man behind the curtain.

We flew back home and got busy scheduling some of those tests. I was really only willing to get the CT scan. The prep for a colonoscopy and the danger of a biopsy did not appeal to me, nor did they seem necessary.  I was flushing more than 20 times a day and had positive tumor markers. I was surprised to find that I did not agree with the Great and Powerful Oz.


A week later, I was on a train to CT for my grandmother's funeral. I got a call from Dr. Doom and Gloom. He got the news that I had been to see the Great and Powerful Oz, and while he liked and respected Oz, he felt that I needed to schedule my surgery in PA; and sooner rather than later. I told him I agreed and hung up.


So, I ask myself, what is the point of this story? The point is that every doctor we see has their own way of doing things and their own agenda. While Oz may be good for some, Doom and Gloom might be good for others. But...and here might be my actual point...you don't know until you go. We need to seek all avenues, all sources of information in order to find what works for us.


My mentor Evelyn always told me, "Go with your gut." This was practically our mantra, and we probably used it at least once a day. I had to go with my gut and cancel surgery the first time. It didn't feel right. But nothing about Oz felt right either, and I had to go with my gut again. Was I right? Who knows. I'm missing some guts now, so it's hard to tell.