It’s been a while since I’ve shared anything thats going on in my life. I have been so busy that I haven’t had the time to write.  I am going to take you back to where I left off starting in January 2011.

I (like MANY others) suffer from really bad acid reflux. As a result of this I had to have my esophagus surgically dilated on a routine basis. Unfortunately the last time I had the procedure performed the Dr. tore the wall of my esophagus.  A tear of this kind is rare and statistically life threatening. I only spent three days in the hospital and luckily the tissue repaired itself. Needless to say I was a little apprehensive to have the procedure done anymore. When it was that time again Mom decided to come with me.  It was a regular cold winter day in January in the city as we headed to the hospital  (Sloan Kettering).

Since I was born with FA I am prone to head and neck cancers. Dr’s are always taking biopsy’s of my esophagus anytime it looked suspicious. When I was waking up in the recovery room the Dr. came in and said they were unable to dilate it at all due to a lump they found in the wall. He explained that he thought it looked very concerning and he would call later in the week with results from the biopsy they took. Immediately mom’s eyes swelled up with tears. I remember being scared but also feeling positive since I had had so many biopsy’s in the past. We called family right away and that was gut wrenching, as they all sobbed.

Mom decided to stay to find out the diagnosis and those were some of the hardest days just waiting for results. When the day the Dr. called I was standing starring out the window of our 36th floor apt. He said the results showed that I did in fact have squamous cell carcinoma (a dangerous form of cancer) in my esophagus. He didn’t know anything other than that I had to have many other tests performed to see if was spreading. I hung up the phone ,sat down and began shaking and crying. Mom could tell right away and she held me in her arms for many minutes which seemed like hours. We both knew the road ahead of us was going to long and tough. Being an FA patient meant I would not be able to receive the most common and sucessfull forms of treatment, chemo and radiation. My best bet would be if it had not spread to have it surgically removed. If it had spread we really would be much more limited with our options. Now all we could do is wait my next apt.

This is just the tip of the iceberg. There are many more stories to tell.