Part 1: Daddy’s dying

“I am sorry to tell you that we believe what we are seeing is cancer” the doctor said. “We can’t be sure of the type until we do a biopsy, but the scans indicate it has metastasized”. There it was. Cancer. The ‘C’ word. I wouldn’t find out until several weeks later the official diagnosis of Pancreatic Neuroendocrine Tumors (PNET), which had spread from my pancreas to my liver.

Worse yet, a quick Google search told me that Steve Jobs died of this same cancer less than two years before, seven years after he was diagnosed. If a man of similar age to me, with unlimited resources, like Apple co-founder Steve Jobs, was not able to beat it, how could I expect to? Certainly, the doctors did not expect me to. The odds of survival beyond even 5 years were 24%. They said it was not curable.

They were wrong.

It has been over 9 years now, many years since my last cancer treatment, and I am living life like I never have before. But I am getting ahead of myself. A lot happened between then and now with many valuable lessons learned that I will do my best to pass on to you.

First, back to the beginning.

It was Christmas Eve 2012, and we were getting ready to go to church when my son noticed the whites of my eyes were yellow. We wondered if this sudden development of jaundice was something to be concerned about, so we called a family friend who is a doctor and he suggested we go to the emergency room immediately. So, off we went.

Jaundice is caused by excessive bilirubin which is produced by the liver. In addition to blood tests, the doctors wanted to take a look at my liver using a sonogram machine. This is the same machine they use for pregnant women so parents can see the baby. There I lay on the table while the technician rolled the sonagram device over my abdomen. I remember the look on the technician’s face during the procedure. I knew he had found something that was not supposed to be there. But it is not the technician’s job to make any interpretations, and so he said the doctor would discuss the results with me soon.
Now, I was starting to get scared.

Next up came a Computed Tomography (CT or “cat”) scan of my abdomen. They wheeled me into a room with a large donut-shaped machine in the middle. I laid on a pad, was explained the procedure and then the technician left the room to another room behind a large glass window. The technician controlled the process from there and the pad I was on moved in and out of the donut. At any one time, only part of me would be inside the donut. The procedure took about 30 minutes and then I was told they would check me into the hospital for an overnight stay and we would hear the results of my CT scan in the morning.

Michele went home and promised they would not start Christmas without me.

The hospital staff was very kind to me that night, even coming in dressed as elves to sing Christmas carols. But my state of mind was dark. Was it cancer? Would I die? My three children who were 11, 15 and 18 needed me. Would I be there for them? How would this change our lives? Why did this happen to me?

I was very scared.

On Christmas morning Michele returned and we waited for the doctor to come with the scan results. As the doctor came in the room, his face told me it was not good news. There was definitely something on my pancreas and liver, but they wanted to do a different scan for more clarity. And so, I was wheeled out for a Magnetic Resonance Imaging (MRI) scan.

The MRI room was similar to the CT room, but the machine was much bigger and more like a tunnel than a donut. This time I was given an IV so that some substance could be injected into me mid-way through the procedure to provide “contrast” for the imaging. A large object was placed over my abdomen and chest which they told me was the imaging camara.

They asked me before the procedure if I was claustrophobic, and as the machine sucked me into the tunnel, I could see why. My entire body was in the MRI machine and the inside of the tube was just inches from my face. My arms were pressed against the side. It was a tight fit. I’m not a big guy and I wondered how they fit larger people inside these things. Worse, was the noises it made. Loud bangs and grinding as if the machine would fly apart. The procedure took about 40 minutes, during which I was frequently asked to hold my breath.

Fortunately, they know how uncomfortable this scan is, so they offered me a headset and my selection of music. I chose the Beatles. John, Paul, George, and Ringo have been a constant in my life, and it is my go-to music when I want to feel happier.

After the scan, I was wheeled back to my room where Michele was waiting for me.
Sometime later, the doctor came with the MRI results. It was the worst news we could expect. Most likely pancreatic cancer, though we would need to go to an oncologist and have a biopsy done to be sure. They can be confident saying pancreatic cancer because 93% of the time, they would be right. He left us alone and we cried. So, this was how it would end. My chances of living beyond 2013 were slim.

Christmas afternoon I was released and told to find a surgeon and oncologist (cancer doctor). But first, Christmas. I put on my happy face, and we celebrated Christmas with the opening of presents and a feast, but the kids knew something was wrong and wanted to know what happened in the hospital.

It was time to tell them and that was so hard. I could not do it. Michele had to tell them through tears that Daddy was dying. We all cried, holding tight to each other. My daughter asked if it was OK if she never went back to college in North Carolina, where she had just finished her first semester. We said that was fine. She would take a semester off and we would move her to our new home in Tampa, FL.

After our crying session, Michele candidly took this picture of the kids and me. Makes me want to cry just looking at it.

Another day, another scan. The day after Christmas I went in for a Positron Emission Tomography (PET) scan. Cancer is known to love sugar (glucose) and that helps the scan find where cancer may be hiding anywhere in the body. The machine is similar to an MRI but with less noise. Before you get in, you must drink a very sugary concoction and then wait 15 minutes for the sugar to get into your system. The parts of your body that light up on the scan are the ones that absorb the most sugar, and thus are likely cancer spots. This time I got to see the results real time. The good news was, only my pancreas and liver lit up. The bad news was, they REALLY lit up.

This was a terrible time in my life because we were pretty sure I had pancreatic cancer. No one even offered up an alternative. But nothing is official until a biopsy is done.

And this is when I made my first mistake. I chose a surgeon and an oncologist without really knowing what cancer I had. There had not yet been a biopsy. On the other hand, I needed a doctor to order me a biopsy and what did I know about all this? All I knew is that I wanted this cancer cut out. Isn’t that what you do with cancer?

We knew people in the business and asked around to find the best surgeon in the area and was happy to get in to see him quickly. The surgeon was associated with an oncologist, but the surgeon was leading the charge. It turns out, surgeons really want to get you into surgery. That’s their thing. And they want to get you in as quickly as possible. They tell you how critical it is to cut the cancer out before it spreads further. They scare you.

That was my second mistake. I let him rush me and I let him scare me.

The surgeon told me that to get the cancer out, he had to do a “Whipple” procedure, which is the typical procedure for pancreatic cancer. This is a very complex and dangerous major surgery where they would remove my pancreas, gallbladder, the first part of the small intestine called the duodenum, the bile duct and then do some re-routing of the plumbing.

Once the pancreas is gone, I would be a fragile type 1 diabetic, completely reliant an insulin. But not only that. The pancreas produces hormones and chemicals critical to digestion. Without it, you cannot even digest your food. But there are drugs for that too. The gallbladder produces bile which is used to help digest fats when you eat too many that the liver, which also produces bile.

So, some pretty important parts the doctor was talking about taking out. Not to mention the gigantic incision they were planning, which would cut me from sternum to belly button.

If that doesn’t scare you, I don’t know what will.

Lessons Learned:

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1: Focus on finding out what cancer you have before thinking about cutting it out.

2: Do not let them rush you. Take your time and make good decisions.

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Check out part 2 in the series: The news of your demise has been exaggerated.

Disclaimer: I am not a physician nor any kind of healthcare worker. Nothing I say should be taken as medical advice. I will simply tell my story for my particular situation and hope you will get something out of it.