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5/16/2017 Latest post:
This is Jamie (Butch's daughter), I'm still in disbelief that I am writing one of these on behalf of my very active 60yr old Dad. Just two weeks ago my dad had his first symptom of dark urine. One time he would go it would be dark, the next time light. He decided to make an appointment with his doctor. They believed it was an issue with his gallbladder. The doctor did notice a slight yellowing in his skin so he was jaundice. They did tests that day and night and even a CT. He was sent home to come back the next morning for what they believed would be a gallbladder removal surgery. Instead my mom and dad were informed there was a small tumor in the left side of his liver blocking 50% of his bile duct and it was probably cancer. They said he should see a specialist at the University of MN or Mayo. A referral was sent to the U of M and the wait was on. We were told it could be two weeks before he got an appointment. We waited from a Thursday until Tuesday to get a call. We were anxious and fearful as we waited to get him help. As those 5 days went on he continued to get more and more jaundice. Even the the whites of his eyes turned yellow. He lost most of his appetite and became very tired. My mom and I became increasingly concerned at the wait to get him to the U. On day 5, the University of MN Gastroenterologist Dr. Freeman consulted with the surgeon Dr. Blanco in Glenwood and said to get him admitted to his regular hospital in Glenwood for IV fluids and tests. He needed fluids and updated bloodwork, etc. in preparation for any surgery. Then on Wednesday he would be taken by ambulance to the University of MN and directly admitted. My mom and I met him there for what has been the longest, most painful days of our lives. We were told over and over that nothing at the University of MN moves fast, it's a teaching school and they are very thorough meeting with teams of doctors on all the data they compile. All we heard on the the first day at the U was that he did have a tumor on the left side of his liver that was likely cancer (which we already knew). We were also told that they would need to get a stint placed in his bile duct so the bile duct could be opened enough to drain. We were never given a time frame on any test or procedure. At times they would rush him off as they had openings. They did an MRI and MRCT on him Thursday as well as CT of his lungs. On Friday morning they took him off to surgery for an ERCP. An ERCP is a procedure where a bendable lighted tube is placed down the throat to get a clearer images of the pancreas, liver, gallbladder and bile ducts. At that time they put the stint in his bile duct and took a sample of the tumor for biopsy. My mom, uncle Jeff (Joni) and I met with Dr. Freeman after the surgery finished. Dr. Freeman said it was very hard to get the stint in there because my dad has a scarring disease called Primary Sclerosing Cholangitis (PSC). This PSC is something he would have had for a long time and people get it for no reason but it does major damage over time scarring the liver and bile ducts and eventually causing Cholangiocarcinoma (cancer). There were two small tumors on the left side and another doctor later told us on the right side too. We were told there is no cure for PSC and that they believe these tumors were now inoperable due to the fact they are underneath the scar tissue. We were also told they are high suspicious of spots they see on one lung. We are in total shock, how does this just happen to someone out of the blue? Someone who is 60yrs old and full of life. We are so greatful to everyone who has reached out. This has been extremely painful to grasp and we want to believe this is not really happening to him. On Tuesday we are headed to still meet with the Surgical Oncologist and Medical Oncologist for Chemotheraphy. My mom, Joe and I are are trying to exhaust all efforts and are working on a second opinion at Mayo. Please pray for my Dad as he works to fight this!