Bag in my Future & Grossly Stable

This was written on Tuesday night - but I am just now getting around to posting it....

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I am now on the plane home from Cleveland, Ohio where I met with a surgeon from the Cleveland Clinic. This is my fourth surgeon in 2 weeks. I have traveled to USC, UCSF, CPMC and now the Cleveland Clinic. I give up.

Over the past month, my fistula has become exponentially worse. I can no longer ignore it.  I knew that Dr. Shelton felt that the only real option for me was to put on a permanent ostomy bag.  But, I am not one for just accepting the opinion of just one surgeon (albeit an amazing surgeon). So – I set to work exploring if there were any other options for me. I found some of the best colorectal surgeons in the US. After reviewing my situation, each of them came to the same conclusion – a bag is my only option. The tissue is too damaged from the radiation, I have too many tumors in the vicinity, and the risk is too great for something to go wrong.

 I’m now pulling out my calendar to figure out when to schedule this surgery. Fortunately, it’s not urgent, but I can’t put it off indefinitely. I need to get the surgery done before it becomes an emergency.  I’m pretty devastated. I guess that in the back of my mind I kept expecting a miracle. But – it is not to be.

But – on the miracle front – I do have good news to share. My latest PET/CT scan showed that my tumors are “grossly stable!” Honestly, I’ve never heard this description before, but apparently it means that my tumors did not go down. Most importantly, it means that they did not grow or spread.

Because my tumors are stable, I am able to remain on my wonderful PDL-1. What a huge relief!

This last month has been a huge rollercoaster. I’m about to head into yet another rough surgery with long term implications but it could be a lot worse. I am lucky to be alive. I just need to remind myself of this as I take on this next challenge.