Chapter 5: Settling In, 3/23/17

It was Feb. 1 when Don went to the ER with waves of abdominal pain that had been ongoing for almost 3 days. While there they did a CT scan, and a week later did an MRI, to take a closer look at what the heck was going on in his belly. We still don’t really know what caused the pain – was it the tumors? Was it something else? But we are thankful it brought him to the ER and led us to this information. Not knowing, and not treating, would be worse.

Prior to the biopsy, we decided we were not going to freak out until we had real information. No need to work ourselves into a tizzy over nothing. One month later, March 1, a biopsy was taken from the biggest tumor on his liver. We think it’s about the size of a chicken egg, a few inches above his belly button. When the biopsy was complete, the Interventional Radiologist who did the procedure, Dr. K, explained that it probably was a carcinoid tumor that started in the small intestine. The pathology lab would take a look to confirm this theory or not. He made it sound so common, so obvious. I soon learned it was not common, but I am thankful that to him it was seemingly obvious. Apparently not all NET patients are lucky enough to have a medical team that recognizes this disease easily.

We got the official diagnosis on Tuesday, March 7. By that time we had done our share of researching what a carcinoid tumor was (and why haven’t we heard of this before?) and what this could possible mean. I’m so glad I was able to join Don at the gastroenterologist office to get the biopsy results. At that point I was afraid the doc would confirm what Dr. K had mentioned; and he did. Since then it’s been a whirlwind of research, networking, referrals and figuring out what this could mean for Don and for our family.

So now we are 14 days into the ride. We were able to have dinner with my sister and her husband this week as they were passing through town and it was the first time we had an open, speak-out-loud discussion with other people about it. Don calls it “cancer lite” which gives us a little boost. But talking about it relieved some of the anxiety of carrying this secret around. Sharing our worries and our hopes with people who love us was precious relief. Don is a cancer patient, but most likely one that will live a long time managing this disease. It is starting to settle in.


Pictured: Three Florida Gators, one Tar Heel, one Wolf, two Green Valley Gators


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