Ten Years Post Pancreatic Cancer, Wondering What’s Next

Article

As unlucky as I was to be diagnosed with pancreatic cancer, I'm extremely thankful to still be here today.

Hearing the words, “I’m sorry you have cancer” cross a doctor’s lips is terrifying. But toss in the four syllables of “pancreatic” made me cry, “Nooooo!”

When I heard those words back in 2013, time froze. I wondered what my wife of 30 years would do after I was gone. Would she remain single or try to find a better life with a new guy? I wondered who would walk each of my three daughters down the aisle on their big days. To not be there to walk with them seemed beyond unfair as years earlier I had helped them take their first tottering steps. Unutterable sorrow flooded over me.

Even today, 10 years later, I remember everything about that moment. I remember being groggy, having woken up only minutes earlier. I remember the morning sun casting long shadows across the pale-yellow tile of my hospital room. I remember the surgeon who I’ll call Dr. Mo appearing in my doorway dressed in his pressed lab coat with a white shirt and a four-in-hand maroon stripped tie tight up around his neck. In his hand, he clutched my pathology report.

He said, “I’m sorry you have pancreatic cancer.” I saw his mouth move but didn’t hear a word of what he said after that before he dumped the report on the bed next to me and walked out. I sobbed.

Looking back, I couldn’t blame him. I think delivering this kind of crappy news is harder on the doctor than most of us realize. What can they say? Is there any way to soften horrific news like this?

Weeks earlier, I had turned yellow and landed in the ER and then the hospital with a blocked bile duct. During a procedure to open my duct, a tissue snippet was taken revealing cancer of some type. Only after several follow-up scans did an ultrasound probe down into my stomach and up into my duodenum reveal a one-inch pancreatic tumor sucked up next to my bile duct. Too sick for surgery, I waited weeks for a several-hour Whipple procedure to extract it.

For those who don’t know, the Whipple was developed in 1935 and is still used today with few changes. With our pancreas buried deep within us, my surgeon compared it to open-heart surgery, and he wasn’t kidding. The top third of the pancreas is removed, along with the gallbladder and perhaps part of the stomach depending on the cancer’s spread. Only one in five can have a Whipple, thus pancreatic cancer’s horrific single-digit survival rate. Without this procedure death is certain. Hence, I was fortunate to be one of the lucky ones.

And this was the easy part. On completion of months of follow-on radiation and chemo, cut loose to fend for myself, the long wait began for me to see if my cancer would remain at bay or come back to take me out. My six-month follow-ups petrified me, and still do.

Over the past 10 years, I’ve wondered why I survived. In the past five years, I began to realize I might make it after all. I wish I could say I did something special, I didn’t. Too sick to travel, I drew the winning ticket and was assigned to someone local who had done many Whipple procedures. I later found out people from states away traveled to see him.

Looking back, one of the reasons I decided to write for CURE was to offer hope and encouragement to others facing far worse news than mine — anything with stage 4 comes to mind. I only had stage 2 pancreatic cancer — if one can say “only.”

Another more recent reason I write is to become an advocate for the voiceless. Far too many facing cancer feel used up and useless. Sadly, they’ve lost their fight. Unable to advocate for themselves, they’ve become cogs in the medical machinery. By this, I don’t mean to disparage the tens of thousands of medical professionals who are selfless to a fault and provide care far beyond the call of duty, but rather the mega-health insurance corporations who set the rules for what will be covered leaving some of us to pay for our cancer care out of pocket. One day I hope to get involved in lobbying for legislation to help level the playing field.

Most of all, I suppose 10 years out rather than celebrate something I did nothing to deserve, I feel a duty to the so many who didn’t make it. By the way, two of my three daughters are now married. I’m holding out for the third one, my baby.

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Dr. Karyn A. Goodman