Meet Patient, Joel S.

July 02, 2021
Meet Patient, Joel S.

Joel is a husband, father of three, and third grade teacher in Coarsegold, California. His favorite cancer therapies are running marathons, writing for children, and playing drums. He and his wife, Amanda, recently founded the Running Buddies Project, which can be found on Instagram at @runningbuddiesproject.

What is your cancer diagnosis and how was it discovered?

I was diagnosed with fibromyxoid sarcoma in 2015. A lump in my right thigh had been misdiagnosed five years prior as a simple hematoma. What the doctor, a respected oncologist in San Francisco, failed to see, was that the hematoma was caused by a very large tumor underneath it. By the time another doctor operated on my leg in 2015 and discovered the cancer, it had metastasized to my lungs.

What is the biggest piece of advice that you have for newly diagnosed patients?

Somewhere along the line, my wife and I started referring to the cancer as “the monster in our car.” Somehow, it just showed up and we had to try to kick it out without crashing the car. But in my case, the monster refused to leave - so we realized at some point that even though it won’t leave, the monster doesn’t get to drive. I’m still in control of the car. My wife and I still decide where we’re going on this ride, and the monster is just going to have to deal with it. It’s our car, after all. So my advice is this: don’t ever lose sight of the fact that you’re the one in charge. Become the expert of your case. Insist on second opinions. Ask every question. Fight for earlier appointments. And don’t forget to live your life the way you want to live it, because you’re the one driving the car.

What is the most important thing you learned from your cancer experience?

Objectivity. I learned how to take my ego out of the equation and change my perspective on my disease. The way I initially viewed cancer was my biggest problem. I saw myself as powerless and wondered if I’d ever be happy again. Of course, this is only natural for most of us - but for me, spiraling down in a heap of hopelessness was a massive waste of energy - it quickly became more draining than the cancer treatment itself. But I learned to stop perceiving and start observing. I learned to acknowledge, without emotion, the facts pertaining to my case: I’m sick, I need certain treatments, my family needs me, and there are still many things within my control. Cancer loses its power over how I live my life the second I break it down and look at it differently. Not only has this shaped the way I live with a terminal diagnosis, but it has shaped the way I deal with pretty much all aspects of life. Where the head goes, the body follows.

What was the most difficult aspect of organizing your care/community?

Setting boundaries. At some point, I had to accept that my disease makes people uncomfortable. That seemed unfair at first, but when put in perspective, it makes sense. After all, we’re not meant to deal with terminal disease. So, like it or not, my disease causes people around me to confront their own mortality. This manifests itself in so many uncomfortable, unhealthy, and triggering ways for me and my family: insensitive questions, uninvited religious comments, stories of loved ones lost to cancer, et cetera.

When your diagnosis causes others to face their own mortality, it also causes them to relate, on some level, to your predicament. Since struggle is universal, I’ve learned to recognize this in others’ efforts to be helpful or encouraging.

So the most difficult (and most important) aspect of organizing care and community was striking a balance between understanding that others are processing my disease on a personal level while also protecting myself and my family from unhelpful stress and triggers. It was a tough skill, learning to say things like “you know what, stories like that are actually pretty triggering for me so let’s talk about something else,” or “that’s great that your friend thinks he cured his cancer by consuming only celery juice but each cancer case is wildly unique and I’ve got a great team of doctors that I keep in regular communication with.” Through this, I’ve learned that boundaries don’t discourage care and community - they elevate it.

 

Are there products, services, experiences or physicians that you couldn't live without? Tell us more! 

For me, doing hard things became essential to my ongoing fight. After my diagnosis, I thought I would never run another marathon, since my cancer coats my lungs. But when my college roommate challenged me to run a post-diagnosis marathon with him, I learned that I can still do hard things. Since then, I've run several marathons and even an ultramarathon to raise money for rare cancer research. Doing hard things is a constant reminder that I still have agency in my life, even as a cancer patient. I encourage any cancer patient to find a challenge, such as running any distance, to focus on and work toward. This has become an essential and life-giving part of my fight, and now I can't imagine fighting cancer without my running shoes.

Interested in connecting with Joel? 

I'm more than happy to talk with others in the cancer community. My email is joelstetler@gmail.com and my Instagram handle is @hey_mr_stetler. 

 

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