Forum Replies Created
My name is Bob. I was diagnosed with cholangiocarcinoma in September 2018. As of today (09.01.2020), I am “cancer-clean” but humble enough to say that I am not “out of the woods.” Here is a condensation of my story: I was fortunate that my symptoms flashed in dramatic fashion. One day, I was hiking and felt a little tired – with a little acid reflex; the next day, I noticed that my urine was tea-colored and my stools clay-colored and “frothy.” Over the next week, I began to itch all over; my eyes looked yellow and I even experienced hallucinations. I was initially directed to gall bladder surgery – by a doctor who had been distracted by some gall stones – when another surgeon listened to the totality of complaints and recommended an immediate CT scan. The scan results correctly confirmed the existence of a tumor and I underwent an ERCP procedure to install stents in my bile ducts and release the backed up bile an bilirubin. Unfortunately, the procedure irritated the pancreas (pancreatitis) and I was sent back to the hospital for three days to ease my pain/discomfort and give my pancreas a chance to chill out. My oncologist was generous in helping me track down a surgeon who was experienced in resecting tumors such as mine; my wife and I also sought out a referral service (Pinnacle Care) that looked over my medical records and recommended three surgeons on the West Coast to whom I could apply. We flew to UCSF in San Francisco and met with “our” surgeon for an hour. That interview was important in that we were able to have an understanding of what my particular surgery would entail and the surgeon was able to assess my fitness for a successful outcome. Again, I was fortunate: my tumor appeared to be operable, I was “fit” enough to endure surgery, I found the right guy, and my wife was a strong and supportive advocate (I call her my “Warrior Empress.”)
The surgery was “successful” in that the tumor was completely resected, with clear margins, and 28/28 lymph notes clean. The surgeon had to take a two-hour detour to remove every small strand of the metal stent that had been inserted during my ERCP (plastic should have been used.) The Whipple surgery was also successful: my belly was restructured and I was Good-to-Go. I followed the advice to undergo a regimen of eight three-week cycles of oral chem (Xenoba), just to be on the safe side. My chemo experience was much like a cloud inversion in the mountain valley where I live: rise up above the cloud and you can find a beautiful day. Doing so took effort and determination, but I am humble in recognizing that the oral medication was not like the chemo-blast that other types of cancer require and proud enough to recognize my own inner strength and will.
I completed my chemotherapy eight months ago. I have had a PET scan and several CT scans; my bloodwork has indicated no return of cancer in my body. On several occasions, I have had a high fever and elevated levels of bilirubin that we suspect have been the result of bile backing up into my liver. Consequently, last month I had an ERCP procedure to dilate two of the bile ducts in the liver and to drain the “sludge.” Several other ducts within the liver are now closed, which raises the question of how the bile can exit the liver and if pars of my liver will atrophy. My surgeon will contact me in February to let me know where to go from here. My overall health has been relatively “good”: my weight is about where it was a year ago (up to 155 and now down to 146) but I am regaining strength. I walk and or hit the gym daily. I do experience back pain, (possibly due to coughing my way out of a bout with pneumonia), but I will have an MRI and a visit to the back specialist to see what to do next.
I have come to see my cholangiocarcinoma experience as the path that I am on during this phase of my life. I could have reached the fork in the trail that led to palliative care, but instead I’m on the “path to I-don’t-know-where.” I mentioned this to an eighty-year old friend (I’m 73); he laughed and said, “We all are.” I find his humor soothing. I would like to hear from others who have had Whipple surgery to hear how things have held up. I’ll find out about the back pain. In the meantime, I’ll keep on trucking – inspired by all the other cancer warriors who are on their own trails but whose paths so frequently intersect. We are a strong, courageous, and sharing group. We are not alone.