D.J. Stewart hits the concrete as his skateboard clatters away from a grind box. Friends groan — he’d nearly pulled off a kickflip manual kickflip out, landing on a revolving skateboard while airborne.
Once more, he picks himself up, chases the board and adjusts his helmet. It’s emblazoned with the words, Fuck Cancer.
The skateboard has come to a brief halt near a pro wrestling ring, where class is in session. The last boom still echoes across this Kansas City warehouse when two sweaty dudes crash once more upon the canvas mat. They are trainees with Journey Pro Wrestling, the entertainment company and wrestling academy D.J. founded and helps run here at the Agnes Arts Center.
D.J. catches his breath next to a speaker blaring Social Distortion and takes it all in, this scene of his making. A Jack Russell terrier named Waylon tails a shirtless skater named Lucas. A wrestler called Wrex Amadeus howls as he rebounds off the ropes. Everything is in motion.
Then it’s his turn to move again. This time, D.J. nails the trick, inciting a chorus of “ohhhh’s.” He fist-bumps another skater and close friend, Ryan Lovell, and cracks open a perspiring Coors.
For D.J., fuck cancer is a catchphrase inscribed on clothing and gear, his chosen punctuation to social media posts and a motto dropped three times on his voicemail greeting. It’s also something of a creed.
Ryan, a filmmaker, captured this in his award-winning documentary short, “Rare Enough.” It shows how D.J. has confronted glioblastoma (GBM) with defiant optimism and the support of his eclectic community.
Tonight, Ryan wonders a bit wistfully where the gang will gather to watch the Kansas City Chiefs this fall, now that D.J. and his wife, Erin, are selling their home. But he’s also pumped to see D.J. join the larger rebellion against brain cancer and set out to amplify other survivors’ stories.
Between chronicling his journey on social media and starring in “Rare Enough,” D.J. has become a dynamic advocate for the brain tumor community. He recently told his story to legendary skater Tony Hawk and radio personality Jason Ellis on the “Hawk vs Wolf” podcast. So far, the episode has garnered more than 15,000 views on YouTube alone.
He also landed his “dream job” as a Community Outreach Coordinator with Head for the Cure. The Kansas City-based nonprofit strives to inspire hope for the brain tumor community and to celebrate patients’ courage, spirit and energy.
While Kansas City will remain home base, D.J. and Erin are preparing to hit the road with their two dogs. They recently bought a motorhome to travel the country and meet other brain cancer survivors.
D.J. is humbled by how his story has struck a chord with people dealing with all sorts of trials. He hopes to raise awareness of brain cancer — and treatments to fight it. Building off the impact of “Rare Enough,” he says he also wants to help change the narrative of survivorship.
“[Brain cancer] isn’t discussed enough, and a lot of times when it is, everybody just wants to shut down and get out of there as soon as possible,” he said. “I want to cast a positive light on this world and show how some really cool people are dealing with shitty circumstances.”
The Agnes Arts Center crew believes in their friend, who’s refused to let cancer reset the terms and conditions for how he lives. They marvel at his relentless drive to transform a terrible stroke of luck into a means of uplifting others and making a meaningful impact.
“I tell D.J. all the time, it’s like he turned the whole thing into a superpower,” said Ryan “Hoodie” Hood, Journey Pro’s head trainer. “Instead of, like, getting hit by a bus full of gamma rays, he got brain cancer. It’s crazy.”
While skateboarding a few years ago, D.J. noticed a nagging pain in his left knee. What doctors thought was a cyst turned out to be leiomyosarcoma, or smooth tissue cancer.
They caught it early, and two surgeries later, D.J. thought he had cancer beat. In the coming months, he founded Journey Pro, proposed to Erin and bought a house with her.
Then the auras began. D.J. would walk into a room and be overwhelmed by déjà vu and a deep sense of dread. None of the symptoms or treatment side effects he’s experienced since have disturbed him as much as these mini seizures.
He suffered a major seizure at work one day and awoke in the hospital to learn he had GBM. Doctors removed what they could of a golf ball-sized tumor in the right frontal lobe of his brain. But they told his wife and mother he’d be lucky to live another 18 months.
D.J. didn’t ask for specifics but knew the prognosis was grim. He chose to concentrate on something his grandmother had once told him about the grandfather he barely remembered: The day he was diagnosed with cancer was the day he started to die.
“I decided I was going to do the opposite,” he said. “If I continued to be stoked about living life, what exactly was the downside?”
If he was rare enough to get GBM, he figured, maybe he was rare enough to beat it.
Still recovering in the hospital after his craniotomy, D.J. heard a local radio station announce a free wedding contest. For the first time, he took a selfie video. He showed the 35 staples on the side of his swollen head and explained with blunt, matter-of-fact humor what was going on. He told them all about Erin, a skater friend’s sister who he’d worked up the nerve to ask out five years earlier.
They were married nine days later at a venue in the West Bottoms, an industrial area and popular hangout for Kansas City skaters. They were supposed to limit attendance to 100 guests; after D.J. took to Instagram to announce what had happened, he says, about 300 showed.
In the following weeks, they also won a honeymoon to Hawaii, and an online campaign raised more than $40,000 to help cover D.J.’s medical bills. He also met Matt Anthony, founder and president of Head for the Cure, who calls D.J. “one of the most genuine and authentic people I’ve ever met.”
“From our first meeting, it was clear that facing a GBM diagnosis hadn’t turned him into a positive person — he was a positive person who had accepted this diagnosis as part of his reality,” Matt said. “It’s just accentuated his positivity, and I think that’s what’s so inspiring about him: He’s himself. He’s a guy you want to be around because of how he lifts you up.”
Even as “the worst shit ever” was occurring, D.J. says, “the best shit ever was happening, too.” The sense of forward progress was invigorating, and D.J. felt compelled to maintain the momentum. Though grateful for the volume of inquiries about his health, he got antsy repeatedly texting the same responses. He decided to post routine video updates on Instagram.
The waves of love that followed, just when I needed it most — it was incredible.—D.J. Stewart
As he learned more about GBM and his treatment options and then charted his path forward, D.J. laid it all out for his followers. He didn’t downplay the gravity of his situation or hide his contempt for the disease. But he also struck a hopeful tone. He urged his followers not to get caught up in GBM’s prognosis (“I’m not the average”) and to take care of their own health so they could “share in this long life I’m going to live.”
“I’ve always been a talker, and I realized, ‘All right, well, I’ve got something to say about all this,’ he said. “The waves of love that followed, just when I needed it most — it was incredible.”
Among the feedback from friends were some comments from strangers. They all expressed support, but a surprising number also thanked him. His raw positivity gave them the perspective to deal with their own trials.
“So I just started making more and more, and then more people started watching them, and now it’s my entire Instagram,” he said.
“Having somebody be like, ‘Hey, man, I’m fighting something similar, thanks for smiling, fuck cancer’ — nothing could ever be cooler than that,” D.J. says in “Rare Enough.”
In addition to chemotherapy, D.J. underwent radiation therapy and stereotactic radiosurgery, followed by Novocure’s Tumor Treating Fields (TTFields) therapy for about two years. He required a second craniotomy about a year following his diagnosis, but MRIs every 90 days since then have shown no signs of tumor progression. He’s no longer using TTFields therapy.
D.J. is quick to point out that it takes more than a positive, defiant mindset to survive one of the most aggressive forms of cancer. He tells the story of how, while on a trampoline in elementary school, another kid insisted D.J. couldn’t land a back flip on his first try. We’ll see, D.J. recalls saying. He sprained his neck and wound up in the hospital.
But he does believe the right attitude is essential. Just as important, he says, is not hiding your vulnerability from friends and family, and asking for help during rough times.
Cancer has been clarifying, D.J. adds. He recognizes all the love in his life, and isn’t shy about embracing it. He focuses his considerable energy on what really matters to him and flicks off the distractions.
“Cancer sucks, but it’s given me all these incredible things,” he said. “I’m a better husband, a better friend, all of that. I wouldn’t change a thing.”
As D.J.’s primary caregiver, Erin acknowledges that the past few years have been very difficult. But they also provided some of her favorite memories, and inspired her to take a job helping other cancer patients navigate the medical billing process at the local hospital where D.J. was treated.
The support from friends, family and strangers is galvanizing, she said.
“It’s an awesome feeling to know it’s not just me that has to take on all of this, to try to be everything for him,” Erin said. “I’m like a pebble in this giant sea of people that are here for him. It gives you energy and helps you do more as a caregiver.”
Like Erin, D.J. decided to pursue a new career because of his cancer experience.
Since his diagnosis, D.J. had spoken or volunteered at numerous Head for the Cure events. He’d been thinking for months about how he might put his skills to use for the nonprofit in a full-time position. After he and Erin bought the motorhome, D.J. approached Matt and other Head for the Cure leaders to pitch some of his outreach ideas.
“A few minutes into what I expected would be a 30-minute pitch, Matt stopped me and was like, ‘What took you so long? I had a similar idea,’” D.J. said.
Head for the Cure recently celebrated the 20th anniversary of its first 5K Run/Walk fundraiser, first conceived by Matt’s brother, Chris, who was diagnosed with GBM at age 34 and died in 2003.
Continually animated by Chris’ drive to help others, Matt said, the nonprofit has raised more than $20 million to support clinical research and patient programs at local brain cancer clinics and foundations, as well as nationally at the Brain Tumor Trials Collaborative. D.J. has all the tools to help advance Head for the Cure’s mission through both established and novel outreach efforts, Matt said.
“D.J. is an incredible source of creative energy, and he wants to direct that energy to help other people facing a similar experience to his own,” Matt said. “We’ve really aligned on ways he might use that creative energy.”
Building on his entrepreneurial experience and deep network, D.J. hopes to coordinate a nationwide skateboarding demo event series called “Shred for the Cure.” (Shredding is a term for skaters showing off their best moves.) Contestants would include prominent professionals, local legends and adaptive skateboarders (people with disabilities who shred).
“It’s cheesy, but I want to create a fundraiser that’s truly fun,” he said. “I think something like this could have mass appeal, raise legit money and build awareness in a positive way.”
D.J. also has a vision of turning “Rare Enough” into a series of interviews with other brain cancer survivors who relish life and “are on their own adventures.”
“Rare Enough” resonated with so many people, D.J. says, because of his trust in Ryan and his willingness to be vulnerable on camera.
“But there are a lot of other people out there that have awesome stories to tell, and these stories bring people together,” he said. “Because of my circumstances, I think I can help other survivors tell theirs in a way that people will find honest and inspiring.”
Erin can’t imagine a better person to lead the effort.
“I honestly feel like everyone who talks to him gets stronger,” she said.
’If I continued to be stoked about living life, what exactly was the downside?’ D.J. says.
patient experience
