Topic: head spinning from diagnosis
I never ever expected to be on a support forum for CCC. A week ago I had never heard of it.
My darling husband, Ron, has had CLL for a number of years, but had no symptoms at all, and really excellent blood levels. I knew that this was a slow moving disease and that he would probably go on for years, and that eventually, many years hence, either CLL or old age would take him. I never ever dreamed of something like this.
Around Thanksgiving, he started to feel more tired, but we attributed it to high stress levels at work. After Christmas he started to feel really dreadful and went to the doctor. He had blood tests done which revealed very high liver enzymes but not much else. He had a CT scan on the 10th of January which showed nothing suspicious. We were referred to a gastroenterologist who thought it might be autoimmune hepatitis or a couple of other things, and last Monday, his belly really bloated, and became really painful. She ordered an ultrasound, and when it revealed a large amount of ascites, he was hospitalized so that all the testing could be done quickly.
The ultrasound showed blood clots in the liver, and I was really rooting for it to be Budd-Chiari syndrome, but the MRCP the next day revealed a mass around the bile duct high inside the liver which is impinging on the portal vein. They gave us a preliminary diagnosis of intrahepatic CCC and this was confirmed by the biopsy.
We saw our oncologist yesterday. He told us that the cytology reports on the fluid they drew from his abdomen revealed that the cancer has spread. The gastroenterologist wanted to perform an endoscopy but he is so weak, and so sick, he really didn't want to do it. We felt that if there was no therapeutic value for doing it, but just confirming what was known, it was just not worth it.
He told us that the disease is very advanced. My darling is so weak, and so terribly sick that he asked me just to ask all the questions and be his voice. This is not like him. He is quiet and calm but very definitely in charge of things. Not now. He is just exhausted, and his pulse is running very high all the time.
He is going to start chemo and we are both hoping that it can maybe give him some relief and possibly a little time. The doctor told me privately that given Ron's weakness, we could lose him within weeks. I feel just blindsided. How do we go from a non suspicious ct scan to stage 4 cancer in 4 weeks???
Is this normal? It feels just so crazy that I keep expecting that someone will wake me up and tell me that it's all just a dream. I'm so glad I found this site. I am feeling terribly afraid.