What Exactly Do I Have?

Posted 5 January 2016

Monday morning we were back home, returning to “real life” in whatever form that is going to take.

Little new info from the doctors on Monday. Schedule for a needle biopsy on November 18 (9 days away).

In the evening, we told Amanda, which was traumatic for all of us. On Tuesday, we told Gregory, and I also told the office staff. All difficult conversations, but better to have everything out in the open.

Change of plans on the medical front: My blood work doesn’t show any of the elevated enzyme levels that are common with pancreatic cancer. So instead of the needle biopsy they’ve decided on an endoscopy. If the tumor is inside my intestines, they can get to it without having to make any external cuts, since the endoscope goes in through your mouth.

The endoscope is a remarkable thing — a remote viewing device that they will send down my throat, while monitoring on a Fluoroscopy machine (a real-time, moving X-ray), and maneuver down through my stomach and to my upper small intestine, or duodenum, which is where my tumor is. Then it can also cut out pieces of tissue and bring them back up. (If you’re interested in more detail about the device, see here.)

On Wednesday, October 11, I had the first of what turned into a series of endoscopies. The tumor was readily visible, and they took several biopsies. Now comes the wait for the pathology reports.

A week later, the pathology report came back on Thursday saying “duodenal adenocarcinoma”. They can’t entirely rule out pancreatic cancer, but they can’t seem to bring themselves to call it that, either.

Then, out of the blue, on Friday morning I got a phone call from my doctor telling me to go to UCSF emergency right away. Some large changes in my most recent bloodwork showed trouble in my liver. Thus began yet another ordeal.