Some people get lucky. Some people never play. I don’t remember pulling the lever but I sure hit the jackpot.
The phone rang as I stood at my desk, banging out some work. I thought it might be my ENT, following up on my scans. Instead it was my GI, almost apologetic. He’d gotten some surprising lab results.
You see, my GI wanted to do a visual scan of my stomach, to see if he could detect any damage from gluten before doing a blood test. I’d been to him a few years before to solve the h. pylori problem and it made sense to go back. He and two interns listened to my story about hair loss and iron deficiency and thyroid nodules. I told him I’d already stopped eating gluten as a precaution and felt great. He agreed to take a look and we scheduled the test.
March rolled around and I arose the day of the test quite relaxed. This would be my second endoscopy and I looked forward to the feeling of rest that comes from propofol. As I showered the water pressure began to drop, souring my mood. I toweled off and got dressed and rode with my wife to the office. The radio informed us of a massive water main break, crippling the pressure in the entire county. We texted our son to tell him he may have no pressure for his shower. We pulled into the complex and walked to his office, staking out a place in the already full lobby. Apparently 7 AM is a popular time for scans.
Waiting in the lobby I pulled up details of the water break only to discover the county closed all schools. Sure I could hear the sound of thousands of children crying out in joy, I showed the phone to my wife. As she notified our son a nurse came around to inform everyone about the water main. We were told to remain but be prepared for a reschedule. The couple across from were in for his first colonoscopy, a treat I did not relish. We all shared suburban stories and commiserated about jobs until the nurse called us both back. We were to be the only patients served that day since they couldn’t sanitize the instruments after us. Trying not to think about the actual details around cleaning those tools, I thought to myself “what luck!”
I disappeared into the back and added another endoscopy to my list of completed procedures. As I came out of it he informed me and my wife he saw nothing alarming other than some chronic gastritis, which was manageable. We returned home and my wife went back to preparing for her conference in Hawaii. She was due to leave in a few weeks and this was the absolute last appointment she could attend.
I put the test out of my mind because the initial report was nothing bad seen. When he finally called I was surprised, because he sounded so hesitant. That’s when I realized it was one of those calls. You know? Like it’s the police, regretfully calling to inform you of someone’s passing. Or it’s the boss calling to tell you the plant is closing down. These days it’s the break up text. Or it’s your doctor calling to tell you they found cancer.
On one of the biopsies they’d found something called a neuroendocrine tumor. It was well differentiated and only 1 mm in size. He didn’t know much about it but he wanted to refer me to a specialist he knew. As I furiously wrote down what he told me I kept the panic at bay. I thanked him for his call and ran straight to Google. I saw words like cancer, carcinoma, and terminal. The blood, what little I’d regrown, probably sank to my feet. I turned and slowly walked downstairs to where my wife worked.
“Dr. High just called. He uh…they found something.” She stood there, her hands suspended mid-air as she waited for me to continue.
“Apparently I have stomach cancer.” And for the first time ever I saw real panic in her eyes. She admitted later she’d been in a constant state of panic ever since the leg cramps, but at that moment it became real. We embraced and I told her I was sorry. I didn’t want her to have to deal with that. She apologized for having to travel and I told her not to think about it. I returned to my work and spent some time looking up the terms.
Neuroendocrine cancer is a form of cancer tightly coupled to hormone production. As hormones surge throughout the body they sometimes trigger tumors in major organs. These are called neuroendocrine tumors, otherwise known as a NET. Not a lot is known about the condition today, but it’s way better than what we knew even 20 years ago. I can name some famous people who had forms of it. Steve Jobs and Aretha Franklin are two of the more noted people who had it.
When found early they can be quite manageable, which is to say as each new tumor forms they simply cut it out of you. There are treatments meant to suppress the production of the tumor forming hormones, which seems to work for people as well. I found the rock star of the neuroendocrine cancer world, Ronny Allen. He gave me hope I could live at least another decade with it. But those first few days, trying to digest the diagnosis, can either lift you or crush you.
But I had to be honest with myself. Eventually these tumors will start attaching themselves to organs or even the bones. Many times they’re found in the gastrointestinal tract, but that could simply be a matter of easy access. So many are found when doing routine a routine endoscopy. Maybe it’s like that prostate cancer saying. There are two kind of men. Those who have prostate cancer and those who don’t know they have prostate cancer.
For most people, myself included, they discover them while having an unrelated, or tangentially related condition. By good fortune they find a tumor. Many of the stories I’ve read start out with something like “I thought I had kidney stones” or “I thought I had a Vitamin D deficiency.” And my GI doctor’s words kept echoing in my head, “I just didn’t see anything like this while I was down there.”
At this point I think I overloaded. My luck, as it was, seemed less fortune and more fatal. Thankfully the break between tests gave me time to digest the situation. With time to pour over facts we determined if the diagnosis was correct I probably had years to live. I had none of the worst symptoms and treatment consisted mostly of watching for signs. So my wife packed her bags for Hawaii and I prepared for my first follow up.
Then the dog got cancer.