I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.

-Frank Herbert, DUNE

In September of 2018 I started having severe stomach pains and I went into an urgent care early the next morning to see what was going on, only to be sent home without any answers. The doctor told me he would run some tests and get back to me by that afternoon. Evening approached and still no word from the doctor and the pain was only getting worse. I, and my family, decided it was time to go into the emergency room. The emergency room doctor, after talking to me, sent me for a CT Scan. Halfway through the scan I was told the radiologist had what he needed and sent back to my room. The emergency room doctor came in and told me I had lesions consistent with cancer in my pancreas and liver. Still no firm diagnosis but it didn’t sound good. It took another week and a biopsy to get a firm diagnosis. Stage 4 Pancreatic Cancer. My oncologist told me I only had 3 to 6 months to live. Getting a terminal cancer diagnosis is crushing, it can feel like nothing you do will matter. But I was determined to make the most of whatever was to come. I immediately started googling, yes, my chances weren’t good, but there was a chance. At the time the numbers I was finding were bleak, 5-year survival was only 2%… well I often joked that I was a 1 per-center, and so the fight began. The first thing I did was to resolve to stay positive, living the best life I can while fighting. I thought keeping a positive outlook may not make me survive longer but it will make the time I have left better. Having been in the information technology industry for over 20 years, I was used to reading technical papers with lots of jargon. This has been incredibly helpful; it didn’t take me long to learn the medical jargon and start to understand all the information about pancreatic cancer and chemo drugs. To a great degree I credit this ability for my success in fighting my cancer. I have treated my illness like an IT project, doing tons of research, developing a plan, measure the results, refine and improve, and repeat. I also learned very quickly that I had to push for the treatment I wanted. With such a bleak outlook the medical professionals had the attitude of “let’s just make him comfortable.” I think it is emotionally hard for them to pursue survival with such a bleak outlook. It isn’t because they are bad doctors, it’s because they see so many patients die, it just takes a toll on them. Within 2 weeks of my trip to the emergency room I was on the best chemo cocktail available to me at the time, FOLFIRINOX. AND, I had an appointment with a nutritionist to help me understand how my diet needed to change to keep my body as healthy and well fed as possible. One of the most frustrating things has been that much of the information isn’t well know. One of the first things I and my wife found that has made a huge difference is the drug Creon, it is a replacement for the enzymes your pancreas normally produces. This is so important because often what kills you with pancreatic cancer is malnutrition. Without the enzymes from your pancreas you don’t get the calories and nutrients from your food. The crazy thing is, we had to ask for the prescription for Creon. A couple pieces of advice when figuring out the best treatment options for you.
  1. Look for published papers from reputable sources when considering a drug or approach. I often start by reading survival stories, looking for commonalities, but once I find something that looks promising, I take the next step of looking for medical research that supports it. I don’t need to find a huge study, only some small studies and indications that it worked or that there is continued interest in figuring out why and how it works. Sometimes it takes years for the research to be done, if at all. So, the only available information is through small studies and antidotal evidence.
  1. Always consider and discuss the consequences of adding or subtracting something from your treatment. A good example is Vitamin D, there is some pretty good evidence that maintaining high vitamin D levels helps your body fight some cancers. I’ve seen vitamin D recommendations as high as 16000IU per day. But if you take a lot of vitamin D your kidneys will remove it from your system, that puts extra stress on your kidneys, which are already getting a workout from the chemo drugs. The last thing you need when on chemo is to cause kidney failure, by taking large amounts of vitamins to the point they are making things worse.
  1. Be skeptical of the “miracle cure” the best approach is often a slow deliberate continuous attack on the cancer. With changes to the treatment when the cancer stops responding to the current treatment.
  1. Get on the cutting edge as much as possible, if it doesn’t save you then it may help save the next person.
  1. Stay positive, enjoy life, and take good care of yourself.