In 2017 when we started talking about what we were going to do in retirement, where we were going to live etc. I decided I would look into having a gastric sleeve. Fast forward to January 2018 I was on the operating room table for the surgery and the surgeon Dr. Peters flicked the camera up to look at my liver and saw a shadow. After a few roadblocks locally, my incredible family doctor, Dr. Maleh helped me organize an appointment at MSKCC with Dr. Jarnagin, an oncology surgeon who specializes in Cholangiocarcinoma, and just 2 weeks later I was on the operating room table to have a Partial Hepatectomy (liver resection) where they removed my 3.1 cm tumor and my gallbladder. I then completed 6 months of oral chemotherapy (Xeloda) based on results from the Bilcap Study. I have an incredible oncologist Dr. Shcherba at MSKCC. For us it is worth the drive to go to MSKCC….they saved my life. Chemo was honestly the toughest thing I have EVER had to do. I started having hand-foot syndrome on the 4th day of my first cycle, neuropathy and epic vomit sessions lasting 3 hours in the middle of the night, but the 6 months honestly flew by. I finished chemotherapy in September 2018 and have been NED (no evidence of disease) since that time. With regular scans (plain CT chest and MRI abdomen/pelvis and regular lab work the cancer worry is always there. Scaniexity is real. Cholangiocarcinoma aka Bile Duct Cancer has a high recurrence rate.
A recent study by JAMA predicts that liver cancer and intrahepatic cholangiocarcinoma will be the third leading cause of cancer death by 2040! THIS. IS. A. CRISIS. With drugs often taking 10+ years for approval the time is NOW for research. I now focus my attention on raising awareness and research funds for cholangiocarcinoma. I have been interviewed on TV and in magazines, put up Billboards, held charity tastings, hold a 5k yearly in Newark, DE to raise much needed research money, make awareness videos, have regular warrior family get togethers at our home and more. Our 5k next year will be on May 20, 2023, at Midnight Oil Brewing Company …sign ups start on January 3 at Races2Run.com. I have been told I should learn to relax but how can I sit back when some of the bravest and best people I have ever met are in the battle to save their lives with such limited treatment options. To learn more about Cholangiocarcinoma please go to curecc.org (The Cholangiocarcinoma Foundation).