Topic: Riding the roller coaster
I'm so glad to have found this site and such a wonderful group of people! My husband was diagnosed with Stage IV colangiocarcinoma on Feb 1, 3 days before his 49th birthday. He had shoulder surgery back in May 2016 and had been in physical therapy, so it was difficult to tell exactly when his pain started to shift, but he started complaining more vigorously and pursuing other pain relief options around Thanksgiving.
Despite repeated trips to his primary care physician, no thorough testing was completed, until the jaundice set in at about mid-January 2017. Through the course of his hospital stay it was determined that he had 2 masses in the liver, one on the left lobe of about 7 cm and the other wrapped around the portal vein. At that point he was deemed inoperable and sent home to begin chemo.
We now know that the cancer has traveled to his spine, the lymph nodes regionally and in his clavicle, and we most recently found 2 small mets on the brain. He begins his third round of gem/cis on Monday.
We have 3 young children, and I have gone from a full-time job that involved over 50% travel to being home full time and barely able to keep up and get a small bit of work done. I'm very lucky that my boss and the organization I work for have been extremely supportive and are giving me extra time off.
I'm not sure how much of his prognosis my husband understands given all of the pain medication he's on. The kids are aware that he has cancer and is getting chemotherapy but we have not shared staging or the aggressive nature of this particular cancer with them.
Sorry for the long post...I look forward to hearing from others on how you have coped with the struggle. I'm trying to only think for each day as it comes, but find myself often thinking about a very scary future.