I write this in my Dad's bedroom, as I watch him dosed up on liquid Morphine, having accepted the inevitable last Wednesday, that hospice is the only option for him ("everything humanly possible has been done for him," was what his oncologist said). On 11/11/2008, his urine turned amber in color. Up to this point in his life, he had been healthy and strong. Over the month of November, he became jaundiced, and the PCP communicated that it was because his gall bladder was going kaput (he is 78), and would have to be removed. They couldn't get him in for surgery until mid-December. I firmly believe, though, that the first symptoms for this cancer started two years ago, when my Dad, who had never had heartburn in his life, had to be prescribed prilosec because of consistent heartburn that started when he was 76.
Because my sister was coming into town for the holidays and my Dad didn't want to be laid up while she was here, he said he would like to have the surgery after Christmas. He had a couple of EVRP (?) stent procedures, where they put a long tube down his throat, through his GI tract, to his biliary tree, to place stents, to try to get his bile to drain. These were awful procedures that my Dad absolutely hated.
On 12/23/08, my Dad had uncontrollable shakes and a spiked fever due to an infection with a recent stent put in. We had to call the paramedics to have him transported to the hospital. After they stablized him at the hospital and gave him CAT and MR scans, it was determined that he had a high probability of cancer, and a probability for cholangiocarcinoma. We were told that the best care would be in Houston at MD Anderson. We were all so overwhelmed, and had the mentality that we should do what the doctor suggests without question, we started the process of trying to get him to Houston for treatment. Because of his health plan, MD Anderson would be considered outside of network, and we would have to pay out of pocket. My Dad and Mom, bless their hearts, were willing to do just that, which would have been $100,000 in treatment. We battled the insurance company for a month, until finally my Dad decided that he would like to be treated at our local cancer center.
On 2/03/09, my Dad had a major resection, eight hours on the operating table, that took out his gall bladder, a major portion of his large intestine, and part of his liver. It was verifed that he had cholangiocarcinoma, a klatskin tumor, and the cancer had grown around the hepatic vein of his liver.
It took him eight weeks to physically recover from the resection, although he was nowhere near where he was prior to the surgery. After recovering, the goal was to get his billirubin down to an acceptable enough level to begin a clinical trial for two chemo drugs that were approved by the FDA for pancreatic cancer but not cholangio. His billirubin did not decrease, but increased. To alleveate this, two stents were placed in the major biliary treens (these were done by my Dad being "speared" by something that could be described as a fencers lance, from the outside in), once on his left side, once on his right.
The cancer has travelled up his biliary tree; if you can imagine a watershed in the mountains. There is one major river (the main biliary duct) fed by two minor rivers (the two main parts of the biliary tree), and above the two minor rivers, many, many "creeks." The cancer is up in the "creeks," forming pools of bile to form, with nowhere to go.
It was told to me by the oncologist that more than likely the inability to dispel bile from the body will result in a toxicity in the liver, causing liver failure, coma, and death. He gave my Dad three weeks to two months to live, as of last Wednesday.
I write this for a few reasons. #1: Therapeutic. I didn't know this chat board was on this webpage until today, unfortunately. It feels good to share my experience with people that know. #2 To provide info on one case for those out there looking into the great unknown. God is with all of us, and we all will have unique experiences. But fear of the uncertain is tough. #3. For anyone out there that can provide any insight as to what is next, compared to your experiences.
God bless all of you, all of your families, and all of your friends, who have had to experience this agressive, ugly disease.