Expected to Die. One Man’s journey to life from stage IV, incurable cancer
Part 2: The news of your demise has been exaggerated
This is part 2 of my blog series. If you haven’t read part 1, check out Daddy’s dying.
It wasn’t until January 2013 that we finally were able to get the biopsy done. This required that I be put under anesthesia while a different doctor put a scope down my throat to inspect and cut out a small part of the lesions from both the pancreas and liver. We talked with the doctor before the procedure and he explained that I would not feel a thing and, at worst, would have a sore throat for a day. And he was right, it was no big deal.
Some days later, our surgeon called and asked us to come to his office. We were sitting there in his office when he popped in the door and announced, “the news of your demise has been exaggerated!”. He really said this. This is when we learned I had a rare type of cancer called Pancreatic Neuroendocrine Tumors (PNET) and not Pancreatic Cancer or Adenocarcinoma . While the five-year life expectancy for stage IV Adenocarcinoma is less than 1%, the five-year life expectancy for stage IV PNET is 24% because it is a slower growing cancer. So, good news… sort of. I was told it had likely been growing for a decade, but I had no symptoms, which is typical of this type of cancer. Who knew?
Even though we had switched cancer diagnosis, the surgeon still wanted to do the “Whipple” procedure and the oncologist concurred. And so, we planned to move ahead with the surgery.
And here is where I learned a huge lesson. Trust your instincts. Or, in my case, my wife’s instincts.
After the final visit with the surgeon, we left the office and Michele said, “You’re not doing this surgery”. I said “What?! What are you talking about? The doctors are saying this is my best bet and the recommended standard for my type of cancer and it is already scheduled in 2 days.” But she was adamant. Her gut told her it just felt wrong. I decided to trust her instincts and we fired the surprised surgeon and oncologist.
Now what? We now knew what type of cancer I had, and we’d learned some other disturbing things from the scans. The cancer had completely covered the splenic vein, the vein which brings blood to the spleen. Not to be defeated, the spleen branched out with an array of mini veins called varices, to get the oxygenated blood it needed. I was told these flimsy veins could erupt causing internal bleeding. In addition, my gall bladder was diseased and full of gallstones which explained the stomach issues and pain I had been having over the last 5 years, and that I had a ‘fatty liver’, which is the step before cirrhosis, which is the step before you die of liver failure.
Oh fun.
And this is where I made the biggest mistake of all. We should have taken our time, done more research on PNET cancer and found a specialist in this type of rare cancer.
But we still believed the cancer should be cut out, if at all possible, just not the Whipple procedure. Maybe we could just cut out some parts that had cancer on it. So, we began a search for another surgeon. This time, we explained the situation and explicitly told him that he was not to cut out my pancreas or do major surgery on the liver but only to do what could be done to cut out the cancer. If it looked too bad, then he was to do nothing.
Let me pause here and give you come background that will become an important part of the story later.
I was always one of those people who rarely got sick. I did not get a flu shot because I never got the flu, or even so much as a cold. So, I assumed I had a super immune system and didn’t have to worry about doing healthy things like eating well, reducing stress, and exercising.
I only really had two minor recurring issues and made the same mistake in treating both.
One was rosacea, a condition a condition in which certain facial blood vessels enlarge, giving the cheeks and nose a flushed appearance. After trying out several creams without success the doctor told me I could just take a low-level antibiotic pill. A pill? Why didn’t you say that sooner?! And it worked. I asked the doctor if there was any cause for concern for long term use of the antibiotic and was assured that it was completely safe. I also asked the doctor what causes rosacea and basically, the answer was, “no one knows”.
The second issue was acid reflux, a common condition that features a burning pain, known as heartburn, in the lower chest area. It happens when stomach acid flows back up into the food pipe. I heard many possible reasons for the cause but apparently the answer to the problem was another pill, a class of drugs called proton pump inhibitors such as Prilosec. Proton pump inhibitors work by blocking and reducing the production of stomach acid. It says right on the box not to take these for more than 2 weeks, but again, I was assured that there would be no long-term effects of taking this medication.
And so, I went blissfully onward taking Prilosec and the antibiotic every day…. for more than 10 years!
Why am I telling you this? Because it highlights everything that is wrong with how medicine is practiced today and our expectations as patients for a quick fix. We want a quick fix, and they give it to us in the form of a pill. We assume it is safe and a good thing because the doctor said it was. We rarely ask about the underlying cause of the condition and when we do, more often than not, the doctor doesn’t really know. Or maybe they know that anything other than the pill would require a major lifestyle or diet change, and they know we probably will not do it and be further harmed. At least in my case, they would have been right about that. I wanted a quick fix. I wanted a pill. I was interested in what caused it and if the cause wasn’t a big deal maybe I would do something different, but I was healthy and everything was going great, so no big changes needed, right? After all, I never got sick.
Fast forward to 2010 when my acid reflux became worse. Bad enough that it was doing damage to my esophagus and the pain was affecting my quality of life. I went back to the doctor and all I was told, was to up my dosage of Prilosec. No further investigation was needed. So, I did. It helped for a time until it didn’t, at which point I tried everything from holistic healers to a gluten-free diet. Nothing worked very well because it was my diseased gallbladder and gallstones. I wish someone would have suggested that as a possible cause.
Back to 2013
I woke up from surgery with a ginormous bandaged incision covering my entire abdomen. That is when Michele told me that it was really bad. The surgeon saw no way to strategically cut out the cancer and only removed my gall bladder, which he said was very diseased.
So, that was it. I had an incurable cancer that had advanced too far to be cut out. A few Google searches told me that there were few treatments, and the prognosis was dire. During my follow-up visit to the surgeon the office administrator, who had taken a liking to me, literally cried in front of me and ran out of the room. The doctor said she was upset that I could not be helped, and he wondered out loud why such bad things happened to the good guys.
Yep, I was going to die alright. The doctor basically just said so.
Lessons Learned:
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.
3: Trust your instincts. Don’t be afraid to do something different than your doctor suggests.
4: Take time to find a specialist, especially if you have a rare condition.
Check out Part 3 in the series: Getting answers and support.
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.