kglass

My mom was diagnosed in August 2005 as having Cholangiocarcinoma, at the time she was 65. I first noticed symptoms in April 2005 in that she looked slightly jaundiced. After a round with our local GP and an emergency CAT scan they found, as they put it, “a mass”. What that meant, no one could or would tell us. We went to see a liver specialist and were told we were scheduled for an MRI…long story short, after about 2 months of testing and ERCPs she was diagnosed as having PSC (primary schlerocing cholangitis) which is a disease causing inflamation of the bile ducts. We weren’t told until early August that a brushing from an ERCP came back positive for cancer. At this point, things just started to go downhill…We didn’t elect to do any chemo at this point because we were told by the former head of the Mayo clinic in Rochester, MN that none worked on this type of cancer. We did do TOMA radiation which slowed the growth of the one large tumor that was wrapped around the hepatic vein. My mother was the most positive person throughout this ordeal. She vowed and declared she was going to be one of the miracles and beat this disease. Throughout the next 15 months she never had one negative thing to say to anyone. If she didn’t feel well she would say she was just a little tired, she never let on that is was getting worse.
For me this was very hard, I am only 25, as you can guess my mother was 41 when she had me as they didn’t think they could have children and then got a surprise.
Christmas 2005 came around and my boyfriend proposed. We were planning a 2007 wedding but were persuaded by the doctors to have it earlier–Oct. 2006.
By giving my mom something to look forward to she made it through the wedding. In November 2006 she started having a problem with fluid build up in the abdomen. It would look like she was pregnant she was so swollen and uncomfortable. This, we found out later, is what starts to happen as the body begins to loose the battle. I will spare you the details of what happened later, but after a two week stay in the hospital we took her home in an ambulance. She lasted about an hour once we got home.
She was able to hold for so many months because she had so much will power and would not let the doctors tell her she was going to die. She knew she was going to make it and believed it until the last day.
I can’t tell you what to tell your mom, but as long as she has hope, she will hold on. One day, maybe through this organization we will find a cure. I would do anything I could to keep another family from going through what we did. WE WILL FIND A CURE.