We've partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month's column comes from Dave Staudenmaier.
"The news of your demise has been greatly exaggerated," joked the surgeon when realizing I might have a rare slow-growing cancer instead of the horrifically aggressive and deadly adenocarcinoma of the pancreas that everyone thought I had.
He was right. I had "stage 4" Pancreatic Neuroendocrine Tumor metastasized to my liver. This was good news because it's a slow-growing cancer.
Figuring out what to do with my life - not getting surgery - is what's most urgent and important to me
It's also the cancer that Steve Jobs had (and died from).
I fired my surgeon and my oncologist. Not because of his humor, but because of the urgency he placed on taking out my duodenum, gallbladder, spleen, part of my stomach and my entire pancreas in a "procedure" called a Whipple. No other options were considered or offered. No calls to a PNET specialist were made - so I found one on my own.
I was also told: There is no cure. There is no remission. Treatment options are limited and inconsistent. It's possible that surgery might have bought me more time - but my new care team understood that I favored quality of life (hence my decision to opt out of surgery) over length of my life. And thankfully, some new treatments not available in Steve Jobs' time have worked to shrink my tumors by sixty percent.
Though we're fighting to keep the tumors from growing again for as long as possible, it sure looks like I won't be around as long as I'd hoped. And though the drugs are helping control this beast, I know they won't help forever and there will be pain and fatigue and other quality-of-life issues. So figuring out what to do with my life - not getting surgery - is what's most urgent and important to me.
My work. Should I quit my job like so many of my fellow PNET patients have? No way! I love my job, and it has only gotten better since my diagnosis. Seemingly by providence, last year my position was changed and I now head development of patient engagement software for the large health-care solutions firm I work for. I have the opportunity to directly help tens of millions of patients - patients like me.
My family. I have a wife and three teenagers. How can I create more time to make memories with them while I still feel good? I now pay someone else to mow my lawn and perform those other maintenance services that previously consumed much of my weekend time. We live in Florida where there's a lot of fun things to do as a family, so we do it - spending more time together than we used to. We also blew some savings for a family vacation to Turks and Caicos. We've never vacationed like that before and it was awesome - something that created good memories. I want to do something like that again.
My everyday life. Fewer things to worry about means less stress. After I was diagnosed, we gave away more stuff than we kept and we don't miss it. All bills are now auto-paid so we don't think about them and can't miss a payment. We have one debit card and one credit card, and we pay for most things in cash. And we learned to say "no," as we limited our obligations to maximize our free time. I've also tried new things: So far I've learned how to ride a horse and how to cook. Up next, skeet shooting.
I continue to rethink and reprioritize my life, and I'm thankful that my new care team understands what's important to me and provides treatment that aligns with my goals.
Dave Staudenmaier is Senior Director of Development for Greenway Health, where he leads an awesome team creating software products benefiting patients and physicians. Dave continues to fight PNET with the support of his wife of 23 years and three children.