In the fall of 2019, I was diagnosed with pancreatic cancer. A tumor had grown on the head of the pancreas and after a few fortunate incidents, I was in treatment in less than a month. Given a year to live, I made a choice. I was going to fight this bastard with everything I had…over the next few weeks, I’ll tell you my story…
Sometimes, life hits you in the head with a brick. Don’t lose faith. ~ Steve Jobs
October 2019: As I sat in the oncologist’s exam room, he reviewed the details provided of ct scans and bloodwork, explained what was happening inside of me and gently stated that with some chemo, and maybe a few radiation treatments, and possibly surgery, I should have another year to live.
June 30th, 2020 I admitted myself to the Mayo clinic for an exploratory laparotomy and pancreaticoduodenectomy. They also call it, ‘the Whipple’; ‘the Whipple’ sounds a lot more playful doesn’t it? It will be the last stage of treatment (hopefully) to remove a tumor that exists on the head of my pancreas. I say hopefully because depending on what they find once they are actually in me, I may need some additional chemotherapy. I will also require regular surveillance over the next 5 years to make sure this bastard doesn’t come back. I discovered this meddlesome beast in October of 2019. Pancreatic cancer is one of the deadliest forms of cancer according to both the National Cancer Institute (NCI) and Pancreatic Cancer Action Network (PanCan). This means a 5-year survival rate of less than 50%. These cancer cells can grow undetected for years and while it presents itself in the pancreas, the real danger comes from its skill of spreading to other organs: the liver, lymph nodes, kidneys, the stomach etc. If that happens, it is usually too late to stop those voracious, often unforgiving cancer cells. You can live without a pancreas: it is much more difficult without a liver. The five-year survival rate with treatment is slightly over 8% with approximately 2% surviving 10 years or more – that’s if you’re one of the 5% to survive a year after initial diagnosis. From the beginning, my plan is to finally, for the first time in my life, be included in the top 1%.
It began with the pain…
Let me take you back to October of 2019. The back pain was nauseating as I sat in the hospital chair. Now the sharp jabs had crept towards my abdomen, along with an annoying throbbing in my side…I shifted uncomfortably in my chair, searching for some relief. We were at the hospital comforting my father-in-law Ben. He was admitted a few days before and was dealing with a number of serious issues that would eventually take his life early in 2020. This in itself was a horrible event that took us by surprise and flipped our world upside down. My wife and I were there for him, but I couldn’t stand my own pain. I got up to walk around a little and in the process, overheard someone discussing gall bladder issues: it sounded familiar. My family has a history of discord with gall bladders so, I scheduled an appointment with my doctor for the next day.
The first step was blood work and an ultrasound; both completed within 24 hours. Feeling a lot worse and unable to sleep, the next day I called my doctor to see if they had any results. ‘Can you come in this afternoon?’ …obviously, the answer was, ‘yes’. The ultrasound was pretty clear. A large shadow was present at the head of my pancreas: not a great start, so my doctor insisted I walk to the surgeon’s office next door and make an appointment. My doctor, whose usual advice to resolve most ailments was a green vegetable drink, a plant-based diet and stress reduction, was urging me to see a surgeon. It was Thursday and there was no availability until Monday. Too often I have been known to downplay my health concerns: the more you worry, the more stressed you become, and then the stress manifests itself into illness…a vicious cycle. Fortunately, I have not had any real health concerns: a flu once every couple of years and some annoying signs of aging have been my main issues. Considering I was not the most health-conscious person, I thought I had done well…up until now. This time, however, it all felt very different.
No availability until Monday
Friday through Sunday became the longest three days ever. I tried to shrug it off, but that didn’t work for my wife Stephanie…did I mention she has excellent research skills? I mean, Top. Notch. Skills. Add that to the fact that there is no shortage of medical advice and health opinions on the internet and I can tell you it started to get real, very quickly. I was most likely facing pancreatic cancer. The worst possible outcomes are always at the top of the search and the averages didn’t look good. Certain death, less than 5-year survival, no real hope, rapid spread, vulnerable liver, etc. By Friday night, I had decided to stop looking and listening. My mind took over from there. How long had it been spreading inside of me? Had it become unmanageable? Was it overpowering healthy cells throughout my digestive system? My liver, kidneys, intestines, stomach were all vulnerable to the deadly cells spread. I became numb and chose avoidance and denial as my first strategy. I fought the urges to get to a hospital. Our immediate thoughts were to make appointments at the Mayo Clinic that was just down the street from our home. I had decided to let it play out…let’s see what the surgeon said on Monday. I prayed this was all a mistake and that our fears were being exaggerated by the information we were finding online.
Come Monday…the brick in the head.
The surgeon and her assistant entered the exam room, their expressions, serious and somber. A computerized tomography (CT) scan was scheduled and bloodwork was ordered to measure my CA-19, a blood marker that measures proteins associated with pancreatic cancer. Wasting no time, I completed the required tasks – again – within the next 24 hours– I have no idea how, but it got done. The Wednesday follow up was prompted by a call to get back into the office, immediately. My CA-19 was over 630, (normal levels are less than 30). A 3.5-centimeter mass had formed on the head of my pancreas. My body went numb and I physically sunk to my knees. I had to hold myself together…it seemed impossible as the surgeon gently excused herself. As I held Steph’s hand, my eyes strained as they held back tears. The pain in my head from trying to control myself was unbearable. A few minutes, an eternity, finally the doctor returned.
‘I called a colleague’ she said, ‘a cancer surgeon: he can see you as soon as possible. He is also making arrangements for you to see the oncologist in his office.’
Incredible! Without hesitation, we proceeded to the other office. The ride silent, tense, filled with fear and all the uncertainty that comes with this horrible news. Focus seemed impossible and deep breaths were required to maintain some sort of functional composure.
The second surgeon was extremely calm as he explained the need for a biopsy and the placement of a stint to relieve the pain. A nerve blocker would also be deployed. As he moved on to making the necessary arrangements for surgery, he sent me to an oncologist upstairs. I was in a state of quiet shock…cancer. I was only 51. My daughters were all at the beginning stages of starting their lives as adults, I had to be there. My son was a freshman, I had to be there. My father-in-law was gravely ill, I needed to be there for him and for my wife. My own father was going through prostate cancer and my uncle was fighting prostate and liver cancer. I was going to make my wife a widow so young…there was still so much life ahead of us. My mother, my brother, my sister, my friends…I was not ready to die.
Please come back for more of this journey. If you read my story, please consider subscribing. All proceeds will be used to support research and development of treatments and therapies for pancreatic cancer. The survival rate for pancreatic cancer patients beyond 5 years is less than 14%, one of the worst of the top ten cancers…