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Apr 7, 2018 Latest post:
Nov 26, 2018
Welcome to Jay's CaringBridge website. These are words no wife would ever think she would need to write. But, they are written and saved... So, here goes...
On March 23, 2018, Jay was diagnosed with Cholangiocarcinoma. I'll save you the time of googling it and say it's cancer of the bile duct. He has a tumor in his bile duct that is completely blocking the flow of bile from his liver. Since I am a fan of science, I am going to explain as much as I can here. Maybe it's therapeutic for me or maybe I just know people like to know the details.
In late 2017 and early this year, Jay started complaining of stomach pain when he ate. We all know Jay is a huge foodie, so sometimes he would eat a mass quantity of questionable food, so he waved it off as bad food choices for awhile. He finally got to the point where "bad food choices" wasn't cutting it and made an appointment with his GP in early February. The doctor gave him some prescription strength Prilosec and ran some blood tests. After about a week of taking the medicine, he started to itch pervasively. He googled the side-effects of Prilosec and saw that itching was one, so he called the doctor to ask for different medicine. The doctor sent him for an abdominal ultrasound that showed nothing of interest. The itching continued even after discontinuing the medicine, and more blood work revealed elevated liver enzymes.
Jay was referred to a Gastroenterologist the first week of March who ran more liver specific blood tests. His numbers continued to rise, especially the bilirubin. Jay's skin and eyes began to jaundice (turn yellow). Here's where things started happening really quickly. He had an MRI done on his liver area on a Tuesday, got the results of a blockage on Wednesday, went in for an ERCP (Endoscopic procedure) on a Thursday to put a stent in his bile duct, and received his cancer diagnosis on a Friday. Yes, that fast.
While in the hospital for the ERCP, Jay developed an ERCP induced acute pancreatitis. The doctor told me that this could happen as a result of the trauma from the stent, but I don't think we were prepared for a five day hospital stay. He received a CT scan of his chest that came back clean. And, after very little discussion with this Oncologist, next steps were clear. Jay will undergo the Whipple surgery at the end of April to remove the tumor. Unfortunately, he has to wait for his pancreas to heal from the pancreatitis before surgery, but the Oncologist does not think the five week wait is cause for additional concern. (Tell that to the guy with the tumor in his gut...)
During the five week wait, Jay will have a colonoscopy and another round of CT scans to check for additional cancer. His itching has disappeared and his color has gone back to normal. He has taken a leave of absence from work as his main focus is to get stronger to endure surgery. His diet is fairly normal for the time being; however, he eats very small amounts and has lost a considerable amount of weight. The surgery will take around six hours and he will likely be in the hospital for about ten days. During surgery, they will check about 30 lymph nodes for additional cancer. If those test come back negative, Jay could have a clean bill of health. If positive, he will undergo some type of chemotherapy.
It's important to note here that Jay isn't a typical case. Cholangiocarcinoma is normally a cancer that affects much older people and is usually not caught in the early stages as Jay's has been. The placement of the tumor in the common bile duct gave an early indication by turning him jaundice. At this point, it doesn't appear to have spread to other organs., and the Oncologist has given us every impression that Jay can beat this. Unless we hear otherwise, that's the goal we are marching toward.
Going forward, I will add journal entries to give updates on Jay's progress. I will also do my best to answer your texts, emails and calls. Jay has taken a bit of a sabbatical from his phone as he turns it on only a couple times a day. Yes, for him, that's a sabbatical. If you text or call him and get no response, it just means he's turned off his phone for a while. Jay's spirits are pretty good all things considering. He has chosen to not get bogged down with medical details, terminology, dates, paperwork, or really anything that might send his head spinning. The outpouring of love from our family and friends in the past couple of weeks has been humbling and we continue to thrive on the positive energy sent our way.