It's amazing to me how quickly time flies and at the same time how agonizingly slow it can be (like waiting for a doctor to stop by).
Once again, it's been quite some time since I've posted on Ben's status (although things had been somewhat "stable" for a few weeks). After his surgery in November he was recurperating pretty well at home. His surgeon was quite happy with his progress on the gastrojejunostomy (I never would have believed I would know what that means).
We had a great Thanksgiving at home with friends and family - the weather was beautiful here in Fort Lauderdale, and while Ben couldn't eat too much, he had a great time.
He was continuing to experience intestinal discomfort (which is normal after major intestinal surgery), but it seemed to continue longer then it should have. This past week, it seemed to be increasing and things didn't seem quite right (luckily we also fit in a holiday party where he got to enjoy more friends from the neighborhood enjoying the annual Fort Lauderdale Boat Parade!! this past Saturday).
Unfortunately the next day - Sunday, December 11th, the pain increased after his evening meal. I took him to the local emergency room where the symptoms seemed to indicate pancreatitis and they checked him into the hospital.
So, fast forward to today (Wednesday) and he's had an MRI, CT Scan, Bone Scan. The "good" news is that none of the tests show any significant growth or masses. The "bad" news is that the doctors are certain that the primary tumor - while the area still not noticeable - are sure it's growing and causing irritation on the pancreas, thus causing the pain. They also determined that through the areas of pain - both left and right side of his abdomen with occasional pain on the lower side.
At this point the doctors have said there isn't much to do but manage the pain. Tomorrow (12/15/2011), we are meeting with a pain management consultant. Given the area of the pain, the doctors say there is a procedure they can do called a celiac plexus block. This procedure deadens the nerve endings in the area of the pancreas, thus relieving the pain. I've googled that on the board and don't see much.
Ironically, he's in very good health othewise. All the doctors are amazed at how quickly he recovered from his surgery, his blood tests/counts are fairly normal.
We had already scheduled a backup consultation with MD Anderson in Houston before this last hospitilization (where we went last year for a second opinion) this Saturday, so hopefully he will be out Friday and we can still make that trip.
Meanwhile, I will try to keep things documented here for my own records and anyone else who finds it useful.
I stil find it difficult to come here very much, although I think about this board on a daily basis and am committed to post here whenever anything major changes to help anyone else.
As always, thanks to everyone - and if I'm not here - I can always be reached via my personal email by clicking on the link on the left.
Take care everyone,
My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis. He was 51 at the time and lost his battle on December 26, 2014 after a long stubborn war. Don't give up!