Topic: My history
My BDC, cholangiocarcinoma, took about 4 months to diagnosis once I knew there was a problem. I made the rounds thinking I had hepatitis or Lyme disease and got an eventual diagnosis of a Klatskins tumor, ERCP, stents, and finally surgery on August 29, 2003. Klatskins are rare and difficult, difficult to diagnosis and difficult to treat. Current Chemo and Radiation technology do not have much success against them. I was extremely fortunate to be put in contact with Dr Roger Jenkins at Lahey Clinic outside of Boston ((781) 744-2500). He, and his team, resected about half my liver, my common bile duct, gallbladder, a portion of my portal vein where the tumor had spread, and a few lymph nodes. Very major surgery taking over 10 hours. He connected a few small bile ducts directly to my intestine. The margins came back clean and I am now a little over 29 months from surgery and doing well. First few days after surgery are a blur, or perhaps I have blocked them out. I know they had me sit on the edge of the bed and stand on, I think, the second day in my room. By the third or fourth day I was slowly (very slowly) walking the hall and I worked hard at doing this a few times each day. My time and distance walking increased every day. I went home after 1 week. The 2 hour drive to our home in Vermont was rough but wonderful when we got there. I continued walking everyday, had home health nurses visiting to help with care (I still had external drains in) and of course follow-up visits at Lahey. I was back at work 1/2 time at about 6 weeks and full time a few weeks later.
I never had chemo or radiation.
I was 56 at the time of my surgery and in reasonable fitness. I try now to eat well, drink lots of water, Essiac tea and green tea. I work with a Chinese Medicine provider as well as my regular Docs, practice Qi Gong and yoga, walk, bike, and hope to XC ski if it would ever snow instead of rain here.
I now have occasional bouts of Cholangitis, an infection of the tiny bile tubes I have sewn into my intestine, which is common for the few of us with this disease.
Overall I am incredibly fortunate and able live an engaged and active life. I am well aware of the odds and count each day a blessing.
(7/14/06 - adding lower case singular spelling of 'klatskin' so it will show up in the search engine. )
8/1/06 I have had a miraculous run of almost 3 years following my successful Klatskin