3 brain surgeries then back on the bike
Published 12:00 am Sunday, July 27, 2014
- Joe Kline / The Bulletin Competitive road cyclist and mountain bike guide Dillon Caldwell, of Bend, is recovering after his third brain surgery for a benign brain tumor. He is pictured on a trail at Swampy Lakes Sno-park before an evening ride on Thursday west of Bend.
In the middle of his time trial in the Cascade Cycling Classic on July 17, Dillon Caldwell was pushing himself harder than he had ever pushed himself before. He blocked out thoughts of all he had been through over the past five years, being diagnosed with a brain tumor and the three subsequent surgeries that almost derailed his studies and his cycling career.
As he pushed his body to its limits, he could think only of his friend, Gary Bonacker, who had been taken to the hospital just minutes after Caldwell left him the day before.
For months Caldwell had taken advice and inspiration from Bonacker and his own struggles to overcome a brain tumor. Now, in one of the biggest races of his life, Caldwell once again looked to Bonacker for help.
“I just recalled thinking, whatever happens today, Gary is working harder at St. Charles today,” he said. “And that was really powerful for me.”
Caldwell’s inspired performance that day punctuated what has been a surprisingly quick recovery, ending a five-year roller coaster ride since his diagnosis. Along the way he has impressed many with his maturity and positive outlook, and has turned what could have been a devastating development into an opportunity to help others facing a similar course.
Caldwell, now 24, was born in Bend to avid cyclists Dan and Louise Caldwell.
“We were a cycling family,” his mother said. “His dad was always racing. I was the one who took him out on the mountain bike trails because his dad would not slow down enough.”
By age 9, however, Dillon was faster than his mother, and soon followed in his father’s tread marks. When Dillon was 10, he competed in the kids’ race in the Cascade Cycling Classic. The race was being paced by an adult rider, and Dillon quickly opened up a huge lead over the rest of the kids. With only the pace rider anywhere near him, he powered on to victory, telling his parents, “I even beat the grown-up guy who was right behind me!,” his mother recalls. “We didn’t tell him any different, that the guy wasn’t racing him. Dillon always thought he was going to win.”
One year, they bought Dillon a raffle ticket for a new bike. “We kept seeing the bike around at different events and every time we’d see it, Dillon would say, ‘Oh, there’s my bike,’” Louise said. “I was ready for him to be in tears when they drew the name of the raffle winner.”
But sure enough, they drew the name of the winner and it was Dillon.
He looked over at his mother and said, “See, Mom. I told you so.”
The family would take camping trips to the mountain bike races that Dan, and eventually Dillon, entered. Two years in a row, Dillon and his father won the state championships for their age groups.
When he graduated from Summit High, he left for the University of Oregon to study journalism. But by the end of his first term in 2008, he started waking up with headaches. He wrote them off as stress from finals, but the pain persisted. He began to suspect that something was seriously wrong.
Near the end of the winter break, in January 2009, he slipped on his steep driveway in his ski boots. His skis cut a gash in his forehead as he fell backward. He mentioned his headaches to the doctor stitching up the wound and was sent for an MRI the same day.
That evening, as Dillon gathered with his family in a downtown restaurant for a farewell dinner before returning to school, his phone rang. The doctor at Bend Memorial Clinic wanted to see him immediately to discuss his MRI.
“On the way over, we knew something was up,” Dillon recalls. “He didn’t give me details, but I knew it was bad.”
In the dark lobby of the building, the doctor told them the MRI showed a small brain tumor, measuring 12 millimeters by 15 millimeters, with a 4 centimeter cyst growing out of it.
His mother broke down immediately.
“I totally lost it,” she said. “I was screaming and hysterical because I thought he was going to die.”
Dillon was quiet, almost relieved because he had suspected something was wrong all along. Now at least he knew what it was.
First surgeries
It was a ganglioglioma, a rare tumor that originates in the nerve cells of the brain. It accounts for less than 1 percent of all brain tumors. It was deep in his cerebellum, down by the brain stem, close to a group of cell bodies, called nuclei, crucial to balance and motor function.
“Your cerebellum is what makes us athletes,” said Dr. Kent Yundt, the neurosurgeon who would operate on Dillon that day. “Everything that’s coming into the cerebellum is connected in those nuclei and that tumor was right in that area. It’s not an area that you want to go searching for things.”
If the tumor had entered those nuclei, or if they were damaged by surgery to remove it, Dillon would never ride a bike again. Yundt had to tread carefully, trying to distinguish what was tumor and what was healthy brain tissue. He was unable to get all of the tumor in the first surgery. Dillon would need a second operation three months later.
Recovery was slow and difficult. He was discharged walking with canes. It took months for him to resume a normal life.
Dillon returned to the University of Oregon in the fall and joined the cycling club at the school. But MRIs over the years showed the tumor was still there, and still growing. He would need a third surgery, possibly his last chance to get the tumor out of his head.
During the summer after his sophomore year, Dillon traveled to the University of California, San Francisco, where Dr. Mitchel Berger would conduct the procedure. The night before the surgery, he got a final scan to map out the location of the tumor.
But just as the anesthesiologist was preparing to put him under, Berger came rushing in. The tumor had shrunk in size.
It was Dillon’s choice, he said, whether to continue with the procedure, but it didn’t have to be done that day. He opted to wait, giving himself time to finish school and continue his cycling.
“So instead of going in for surgery that morning, we ended up in a diner stuffing our faces with bacon,” Dillon said. “It freed me up to go back to life as it was.”
He finished his final two years of school, completing a degree in philosophy, a precursor to going to law school. He became president of the cycling club and fell in love with road racing.
At least for a while, life was normal again. After graduation, his plans to jump back into racing hit a road bump. MRIs showed the tumor growing again. While he had time, a third surgery loomed in the future. Every six months, the news was different. It was up and down, it was growing, it was shrinking.
“It was super draining,” he said. “I felt like I had been able to make such a great comeback… (It) taught me that it just doesn’t end. It’s part of the deal. It’s who I am.”
The thought loomed that he might not ever be cured, that he might not be able to pursue competitive cycling. In the fall of 2013, Berger told him his situation was not an emergency, he could wait several months before the surgery. He decided to take some time to relish all the things important to him: his family, his friends, his cycling.
Over the four months, “(I) lived, just lived,” Dillon said.
His family had just moved into a new house in Shevlin Park, and Dillon rode his mountain bike through the local trails. His aunt sent him a plane ticket to go riding in Tuscon, Arizona, with a friend. “I put in the biggest week of my life on the bike, 400 miles in a couple of days, mountain biking every day,” he said. He had confidence in his surgeon and believed everything would come out alright. But in the back of his mind, the worst case scenarios lingered.
“For the first couple of weeks, I was a little bit depressed and in a tough place with it,” he said. “But then I started to reach out to friends more and more, and realized what an opportunity I had. I had the opportunity to (relive) the summer after graduation that I didn’t really get to enjoy during that part of the year. And so it turned out great.”
Support system
As Dillon struggled through his surgeries and the recoveries, he began to lean more on an old family friend. For years, his family had frequented Sunnyside Sports for their cycling gear and had come to know the owner quite well. Bonacker was a former bike racer himself. But like Dillon, he had been diagnosed with a brain tumor and has gone through surgeries and chemotherapy treatments.
The two hit it off immediately, with Bonacker offering his younger counterpart some much needed perspective.
“It always sounds like a Hallmark card, but you need to take what you used to see as your life several months down the road, several years down the road, and look at just this Wednesday, and then Thursday, and the next day,” he told Dillon. “And do something not just for yourself, but for other people as well.”
Bonacker helped Dillon come to grips with the frustration and anger about his condition, and helped him to refocus his energies on the things most important to him.
“When you first find out you have cancer or whatever it is, any huge medical problem really, your initial feeling is that you’re alone with it all, and why is this happening to me?” Dillon said. “When you finally realize you’re not alone with it, and there’s so many positive things you can do, then it all turns around. And Gary more than anything helped me with that realization.”
Dillon scheduled his final surgery with Dr. Berger in January. Again the family made the trek down to the Bay Area and prepared for another prolonged recovery.
“When I saw him in the ICU, right away it was evident he was going to be fine,” his mother said. “He was so wide awake and happy. Everything was amazing.”
Moreover, the post-operative MRI showed them a picture they had never seen before.
“It was clear for the first time,” Dillon said. “That was the most beautiful thing, the most beautiful picture of my brain that I had ever seen.”
Louise now refers to it as the clean slate.
“We knew whatever was going to go on, the doctor was so confident that he got it all, that we were going to be able to put this behind us after five years of this roller coaster,” she said. “The sad thing for Dillon was he couldn’t go forward with his life until we got this resolved.”
Berger said Dillon’s prognosis is excellent.
“My goal one way or another is to cure him,” he said. “And we may have to jump through a few more hoops to do that in his lifetime.”
He will continue to have regular scans of his brain every six months to ensure the tumor has not grown back.
The club
But this time there would be no canes or months of recuperating on the couch after the surgery. Doctors told Dillon he couldn’t go back to cycling or other athletic pursuits for another three months, but he got back to being himself almost immediately. Only a large triangular-shaped patch shaved in the back of his head gave any hint of what he had been through.
“Anybody who’s had a craniotomy — I call them cranies — we all have that similar thing in common: that there was a guy with his fingers in your head. And he ended up with a kind of cool, inverted V on the back of his head. It looked cool,” Bonacker said. “It’s a weird club to belong to, but you definitely don’t want to be the only member.”
Bonacker has mobilized that club around the Tour des Chutes, a fundraising bike ride that for the past 10 years has raised money to help cancer survivors. This year, the board of directors held a retreat to consider where to take the event over the next decade. With two board members retiring, they asked Dillon to join the board.
Dillon had already pledged to help organize the volunteers for the ride and market the event through social media. As Bonacker’s health has waned, he’s relied more on others to help organize the event, and seems ready to pass the torch on to the next generation.
“He adores Dillon,” said Leslie Cogswell, executive director of the Tour des Chutes. “He kind of sees Dillon as the new face of Tour des Chutes.”
Board members say Dillon brings youth to the board, but it is his maturity that has made the biggest impression on them.
“He just has a huge heart for life,” Cogswell said. “He chooses to live life no matter what it throws at him.”
Lizzi Katz, community education and survivorship coordinator for the St. Charles Health System, has known the Caldwell family for years, but has gotten to know Dillon even closer through his volunteer work with cancer survivors.
“I think that his perspective from his own experience gave him some wisdom that’s unnatural for someone his age,” she said. “I think a lot of people his age finish that experience and they just want to retreat from it. And he’s embraced it in a way that’s just really impressive.”
His mother agrees.
“It’s made him grow up really fast,” she said. “He now wants to do the things that he really enjoys. He was driven to be a success in academics. Now he’s having so much success on the bicycle. In a way, it’s changed his whole career path.”
Back in the saddle
Dillon got back on the bike for the first time on April 1, three months after his surgery. He and a friend went out to ride the trails at Horse Butte.
“It was great. It was amazing, the best thing ever,” Dillon said, throwing out superlatives that couldn’t begin to describe the feeling.
Over the next three months, he continued both mountain biking and road cycling, before entering his first competitive race this year, the Baker City Cycling Classic at the end of June. He finished 11th in the time trial and 31st in the road race. It was an impressive showing six months after brain surgery, with only three months of training.
He then finished second overall in his category in the High Desert Omnium in Bend over the July Fourth weekend.
“I had won that the year before,” he said. “But second place this year was even better.”
The next weekend he rode 100 miles with friends and family in the Tour des Chutes.
Later that week, Dillon met with Bonacker and Cogswell for coffee, a day before he would race in the Cascade Cycling Classic, perhaps the premier cycling event in Central Oregon. They chatted for an hour and planned to meet down the street at Sunnyside, where Dillon wanted the bike mechanic to check out a wheel before the big race.
As the mechanic spun the wheel round, Dillon heard him stop it suddenly. The sounds of sirens told Dillon what was happening. Bonacker had had a seizure while riding his bike down the alley toward the store.
“I know when he collapses, the last thing he wants is someone to see that happen,” Dillon said. “I’m kind of torn sitting there in the shop. I don’t want to go out and witness it. I know there’s people there taking care of him already. He doesn’t need more people in the way.”
The paramedics took Bonacker to the hospital and Dillon went home.
The next day, Dillon went out to Prineville for the time trial with thoughts of Bonacker lingering his head. As he pushed harder and harder though the race, trying to overcome his lack of training, he drew strength from his old friend.
“I was going, ‘I know Gary is working harder than this right now,’ and that inspired me to push a little harder,” he said.
Dillon tied for first in the event. “I definitely attribute the win to that.”
His time would have been good enough for 64th among the pro racers that day. “That’s pretty outstanding,” he said. “I guess I have a chance.”
The early success has Dillon rethinking his immediate future.
“I had big aspirations for 2014, and last fall, I was no longer thinking that was realistic. I’ll go back to school or start my career earlier,” he said. “Now that it has come back so quickly, I’m already looking forward to next season, pushing my limits and racing more and more.”
He still plans to go to law school eventually, and hopes to work protecting the environment. But this year, he’d like to catch on as a guest rider with a cycling team and see how far he can push his career.
However far he goes, Bonacker, the former racer, will likely be his biggest fan.
“Dillon, depending on where he wants to put his efforts, could be a couple of notches above where I was for sure,” Bonacker said. “I think Dillon’s smart in that I know he’s thinking of academics also. He’s not just going to be strictly a cyclist, but he is talented and it will be interesting to see how far he can go.”
—Reporter: 541-617-7814, mhawryluk@bendbulletin.com