The Long and Winding Road Leading to My Non-Hodgkin Lymphoma

April 25, 2024
John Smelcer, PhD, CAGS
John Smelcer, PhD, CAGS

John Smelcer is the author of 60 books, including a dozen books of poetry. His most recent collection is "Raven." For a quarter century, he was Poetry Editor at "Rosebud Magazine," where he currently serves as senior editor emeritus. From 2016-2020, he was the Inaugural Writer-in-Residence for the Charter for Compassion, the world’s largest compassion movement with over five million members in 45 countries.

The day I found out I had cancer, my wife and I thought I would just be going in for a scan.

They say that no two cancer journeys are the same. We all go through our unique experiences from beginning to end. I have learned how true that is.

My cancer diagnosis of non-Hodgkin lymphoma took a circuitous route that would make the greatest explorer get lost, even with a compass and map. It all began with a tingling in my left hand. Month after month, the tingling turned into electrical shocks. I’d almost jump out of my skin from the sudden shock that felt like I grabbed an exposed, hot wire.

But it wasn’t the hand that caused the pain or the increasing loss of use. Unbeknownst to me, there was a tumor growing in my left armpit. The tumor was strangling the nerve bundle that runs from the spine down the arm to the hand and fingers. My pinky finger and neighboring ring finger were dying. I was losing the use of both fingers. My pinky lost all sensation.

My family doctor thought it had to do with lifting weights at the gym. He said to stop lifting so much weight. His advice reminded me of the old joke: Patient: “Doctor, it hurts when I do this.” Doctor: “Then stop doing that.”

He had me do some X-rays, but they yielded nothing. After the pain and loss of use got worse, he recommended I see a local neurologist. He and his assistant did one of those painful needle tests where they “listen” for nerve damage. You can actually hear what sounds like static to indicate healthy or damaged nerve connections. I was sitting there. I heard the same thing they heard. It didn’t make sense to them or me.

But, in true used-car-salesman fashion, he said maybe the nerve was being impinged (pressed on) where the nerve funnels through a small gap at the elbow. He said he could cut open my elbow and re-wire my nerve to go around it. But there was no guarantee that it would work, and there was the possibility that the re-wiring would leave my left arm unusable in the future. I knew from hearing the same static sounds they did, that they had no idea what was wrong with me. I passed on the idea.

I went to see a sports medicine doctor. He, too, had no idea what was going on. This all happened over a year or so. All the while, the tumor was growing, destroying my nerves, spreading. I was now able to feel the mass in my armpit. Finally, having exhausted my local medical professionals, I was sent to a specialist in a larger city 100 miles away. In no time at all, he ordered a scan, which revealed something was there. The very next day he scheduled a biopsy. Even as the image came up during the surgery, the doctor said it was indeed a tumor. No doubt about it. He had seen thousands of others just like it.

Right then and there, I was sent to meet the chief oncologist. He told my wife and me that the cancer was so aggressive and spreading so quickly that I’d have only three months to live if I did nothing. He wanted to admit me to the hospital to begin chemotherapy right then and there. My wife started sobbing.

We had driven 100 miles thinking we were only doing a scan and that we’d be home in time for our 11-year-old daughter to get home from school. We hadn’t imagined where the day would lead us so quickly. It was a Friday. Our daughter was in school. We were able to talk the doctor into waiting to admit me until Monday morning. We needed time to digest the devastating news and what it would mean to our family.

The story has a happy ending. I spent the next six months in and out of the hospital for chemo and immunotherapy. My body went through the usual degradation. I lost weight, hair, strength and libido. You name it. At my lowest point, I looked like Elmer Fudd or a gaunt Mr. Clean. I rang the bell, signaling that I was cancer-free. It’s been more than a year, and there’s no sign of the cancer returning. Everything I lost has returned. Today, I feel like my old self.

One thing I learned from my experience is that the oncologist said he would always rule out cancer first, while the local doctors put off thinking about cancer as a last resort. With cancer, time is paramount. The sooner it is diagnosed, the sooner it can be treated before it spreads throughout the body and goes from one stage to the next. My cancer was discovered just in the nick of time.

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