Cholangiocarcinoma, I wasn't sure how to pronounce it or spell it but I knew it was a type of cancer. I was now part of the club no one wants to belong to. I went to the doctor for suspected gallbladder issues and was told I had a tumor the size of a cantaloupe growing in my liver. Surely it was going to be benign because I was in control of my life and they would just remove it and I could go on with my busy life. I was referred to a remarkable surgeon that I now call friend too, Dr. John J. Fung of The Cleveland Clinic Foundation.
My husband David and I waited in Dr. Fung's office for the biopsy results and it seemed like forever. The news was not good, the tumor was a rare type of liver cancer with no cure. I couldn't breathe, I couldn't see, my head was spinning, was I going to die ?
How could I leave my soulmate since I was 16 and our two beautiful boys, this had to be a mistake. Sadly, there was no mistake. I researched everything I could find and the prognosis was grim, most patients lived a year maybe 2. How could I look my children in the face and tell them there Mom wasn't going to be here for them. I had visions of my son Noah graduating from high school and the chair next to my husband was empty. I had visions of my husband sitting at the beach and the chair next to him was empty. I had visions of our oldest son Jake getting married and I wasn't there. How could this be happening ? I wanted to grow old with my husband. I had my first liver resection in September 2010, it was over an eleven hour surgery removing over 70% of my liver and Dr. Fung saved my life! I followed up with six months of chemo and two months later the monster returned. Cholangiocarcinoma has a very high recurrence rate. I was fortunate enough to have a second liver resection followed by six months of chemo and those pesky cancer cells created two more tumors. I started a new chemo and had steriotactic radiation. The radiation treatment killed the two new tumors. Several months later two more tumors appeared and we radiated them with success. My latest scan shows another new tumor, I'm hoping 5th time is a charm and we can be done.