In 2016 I was experiencing a lot of nausea, vomiting and diarrhea. I chalked it up to bad food and hangovers. In July of that year I encountered loss of appetite and extreme weight loss. Kelly convinced me to go to the emergency room. I was skeptical but I went. That was when they found the mass on my pancreas. It was diagnosed as pancreatic neuroendocrine tumor (PNET for short).
The first form of treatment was lovinox blood thinners to help remove the blood clot near the mass. No one advised me to stop taking aspirin during this treatment. I developed an ulcer in my duodenum and bled out internally through my digestive tract. My hemoglobin dropped to 4.9 and I was as white as a ghost. I spent seven days in the hospital. Still, I fight.
I went through nineteen rounds of chemotherapy, fifty-seven individual sessions of carboplatin and etopicide. Still, I fight.
I have had infusions of iron, magnesium and potassium to help my blood chemistry. Still, I fight.
After each round of chemo a device is attached to me. It is designed to pump more chemicals in my system to boost my white blood cell count. Still, I fight.
Despite what you see in the movies nausea hasn’t really been a big deal for me. But I did have a very bad day of it. I was vomiting every twenty minutes. Late in the day a sales rep tried to reach me for a deal she was working on that was never going to happen. When I didn’t respond to her immediately she escalated me to management. Still, I fight.
I have had nurses miss my veins when putting the IV into me. It burns and is painful. Still, I fight.
I have had well over a hundred blood tests. Needles constantly drawing blood from me. Still, I fight.
Alcoholics and people with cancer in the liver develop a condition called ascites. It is the build up of fluid in the peritoneal cavity. It squeezes the other organs to where you have trouble breathing, eating, drinking and sleeping. I was to the point where the only comfortable position to sleep was sitting upright in an office chair. The outpatient clinic was draining off up to ten liters at a time. Finally they installed a drain tube in my belly so that I can do this from home. It takes me about thirty minutes from start to finish. Still, I fight.
I also have pancreatitis. The pancreas is unable to produce enzymes to help digest food. As a result everything passes through you and you still lose weight no matter how much you eat. I have to take a drug with every meal that reproduces that enzyme. Still, I fight.
I have suffered uncontrolled bowel movements. It is frustrating and humiliating to crap your own pants. It is demoralizing. Still, I fight.
Through all this I still have diabetes. With my whacked out blood levels I have experienced severe blood sugar crashes. I have been playing with my own insulin levels without the advice of the doctor. I haven’t had a crash in awhile. Still, I fight.
My right leg swelled up from my foot to my knee. It made walking difficult and when I was in New Orleans last month I stumbled around like a broken man. After my plane landed on my return a police officer saw me in distress at the airport and asked if I needed help. I politely declined. The oncologist office urged me to go to the emergency room. They diagnosed that I had a blood clot behind my right knee. Still, I fight.
I am an emaciated skeleton with a huge distended pot belly. I have lost almost all my fat and muscle mass. When I received an injection this month the nurse remarked that I barely had any tissue on my hip to inject into. I wake up several times during the night because with the lack of muscle and fat I don’t have that natural padding to sleep on. I have to adjust positions to keep from getting sore. Still, I fight.
In New Orleans I encountered a bouncer who made fun of my appearance, the emaciated skeleton with the pot belly. He and his buddy had a good laugh at my expense. If making fun of me helps them feel better about their lives I feel sorry for them. Still, I fight.
I am on oral cancer meds. They caused a condition called hand/foot syndrome. My feet blistered so badly that my feet stuck to the shower floor and I couldn’t walk from room to room without pain. Still, I fight.
I have to buy twelve packs of bottled water because the twenty-four packs are too heavy to carry up my stairs. Still, I fight.
Last week I tripped on a curb. Lacking the muscle strength to break my fall I went head first into the sidewalk. It was the first time I took an ambulance ride. Luckily my CT scan was clear and the injury looks worse than it actually is. Still, I fight.
I approach all this logically. With the exception of ascites I have anticipated everything that has happened so far. I manage this with a modest amount of grace and a bountiful sense of humor. Finding something to laugh about everyday is key to keeping my spirits up. Knowing what to expect and logically planning for it keeps me mentally prepared for everything the disease throws my way. It will get worse. Still, I fight.
The average life expectancy with stage four PNET is twenty-three months. That puts me to July of this year. I am pretty confident I am going to make it to then. The five year survival rate is sixteen percent. I know the odds. Still, I fight.
This is not a battle, it is a grinding war of attrition. For every side effect and debilitating symptom I have to develop a counter move to combat it. Still, I fight.
Still, I fight.