If you live in the US, you can help other people affected by pancreatic cancer by making one or two quick phone calls this Tuesday, June 21. Read on, or you can get the summary details and make a difference in just a few minutes.
Update: I'm headed to Capitol Hill again in 2017. Please consider joining me by calling your members of Congress on that day.
Like most people, Michelle and I tried to live healthy lives, particularly when it came to avoiding carcinogens and high-risk health behaviors. She even did a better job of it than I do—she ran five half-marathons in 2015 (and was registered for a sixth), ran over 1,000 miles in each of 2014 and 2015, was a vegan, focused on living a low-stress life, and was even a health care professional with a doctoral-level medical degree.
That’s why it was all the more shocking when she developed a large pancreatic mass which went undetected until it had spread throughout her body, taking her life just months later.
When these photos were taken last year, Michelle already had advanced pancreatic cancer. We just didn’t know it yet.
Michelle should have, and likely would have, lived twice as long as she did. We would have grown old together like we planned. Pancreatic cancer rarely affects those below age forty, and the type that she had (pancreatic undifferentiated rhabdoid carcinoma) is even rarer, especially in adults. The median survival for that type is four months. Michelle survived just under five months from the time the primary mass was found. We found it too late.
To this day, we still don’t know how or why she got pancreatic cancer. To the best of our knowledge, it wasn’t genetic (we had tests run) and it wasn’t environmental. It’s what they call “sporadic”. That can happen with all types of cancer. We certainly weren’t looking for it, but even if we had been, it likely still wouldn’t have made a difference. Right now, experts don’t really know how to look for it.
I learned so much about pancreatic cancer in these past months. Previously, I had only heard of it from news about Steve Jobs and Patrick Swayze. Maybe you heard about it before because of Sally Ride or Randy Pausch or Luciano Pavarotti or Michael Landon, or more recently because of Alan Rickman. Like anyone in their thirties, neither of us gave it much thought. I really had no idea about the vastness of cancer in general, or even of pancreatic cancer, and I definitely didn’t know that there was no way to detect it early except by accident.
The thing that’s most important to me about pancreatic cancer research is early detection. Think mammograms. There is NO equivalent for PC.— Justin Miller (@incanus77) June 17, 2016
The reason Michelle’s, and nearly everyone’s, situation with PC is so dire is because there are generally zero symptoms until it’s terminal.— Justin Miller (@incanus77) June 17, 2016
Think about that. Zero symptoms until it’s terminal. It’s devastating. 46k people in the US are diagnosed each year & 40k of them die.— Justin Miller (@incanus77) June 17, 2016
That’s right—most people affected find the disease after it is considered terminal.
If there’s one thing I want to change about pancreatic cancer, it’s early detection.
There are other important facets, too—better chemotheraphy, targeted immunotherapy, research into understanding new risk factors and prevention, better surgical procedures, and many more. Plus there are lots of things to be done for cancer in general that can help millions of people.
But early detection almost certainly would have saved Michelle. The fact that she was young, was an athlete, had access to the best health care, had broad familial and friend support, and was a strong-willed person of action and determination likely would have saved her had things been found in time to operate. Yes, even then, 80% of the time pancreatic cancer comes back at least once, but the odds would have been much more in our favor. Early detection would have made a monumental difference.
That’s why this week I’m attending the National Pancreatic Cancer Advocacy Day in Washington, DC. I’ll be meeting in person with my representatives on Capitol Hill and making an appeal for more funding for pancreatic cancer research.
If you live in the US, you can help by making a simple phone call or two on Tuesday to your own representatives to encourage more funding for research. Pancreatic Cancer Action Network (PanCAN), the group behind the event, will help you with what to say and who to call. You can do it anytime on Tuesday during East Coast business hours. Pancreatic cancer research is terribly underfunded, is light years behind other cancers, and has been stagnant for decades.
This is an easy way to make a difference. Please consider making a call, as well as sharing this post with friends and family.
In the future, it might be a blood test. Or some sort of annual scan. Or even a little kit you buy at the store and do at home on your own.
Maybe you know someone who has been affected by pancreatic cancer. Maybe you know me or you knew Michelle. But maybe, one day when you least expect it, it will enter your life the way it did ours. It was the furthest thing from my worries until just recently. I am confident that we can make advances and come up with simple, non-invasive tests that will save hundreds of thousands of people from going through what we did.
Together, we can keep pancreatic cancer the furthest thing from everybody’s worries.