GAYLORD — Tom Johnson does not want anyone to feel sorry for him.
He’s not fishing for sympathy.
He just wants to hang around as long as possible and hit some milestones.
The longtime Gaylord High School coach — 68 seasons and counting — and official has terminal pancreatic cancer, and his doctors gave him somewhere between 12-18 months to live last winter.
Johnson survived prostate cancer in 2009.
“It’s just another day,” Johnson said. “You live every day like nothing is happening. You live every day to the fullest. Then one day the man above calls.”
The day before the 2023 firearm deer season, stomach and back pain that started that September became too much to ignore, so he went to the hospital. Several tests revealed nothing.
Later, a CAT scan found a mass on his pancreas. A biopsy last December revealed cancer.
In June, Johnson finished a seven-month chemotherapy treatment of 12 courses that lasted up to 54 hours each between infusions and medications. A port in his chest allowed for a weekly infusion that lasted 6-8 hours. A pump kept the flow of a cocktail of eight medications up for another 43 hours after that.
“I don’t wish chemo on anybody,” Johnson said. “It’s brutal. It really is. … I told the nurses, who are all former students of mine, ‘Are you trying to cure me or kill me?’ I wasn’t sure.”
Four treatments into a course of 12, it was discovered surgery wasn’t an option. The cancer was too close to a major artery to operate. Multiple doctors gave the same diagnosis, including one of the world’s top pancreatic surgeons, Dr. David Kwon at Henry Ford Hospital in Detroit.
“I said, ‘What’s my life expectancy?’” Johnson said. “He said 12-18 months. I’ve come to terms with that. I don’t want any pity.”
The Johnson family has already had its share of heartache and hurdles.
His daughter Krista passed away in 2020 from diabetes at age 43.
He and he wife Jennifer lost a baby boy, Ben, in 1974 after eight days. They donated the body to science. Twenty years later, Gaylord’s athletic secretary’s five-day-old baby had the same issue, and it was cured because of progress made in its treatment.
“I’ve lived a great life,” Johnson said. “My wife has been a saint.”
Johnson’s two surviving children are both in education. Luke, recently hired as the boys basketball coach at Traverse City Central, is an assistant principal at Traverse City East Middle School. His daughter, Tori Zbytowski, works in special education at Elk Rapids High School.
Tom has seven grandchildren — Malia, Eli, Aiden, Ben, Nora, Finn and Zander — and the time he gets the most emotional about the whole situation is when he thinks of them.
“I’m not afraid of dying,” Johnson said. “I just concerned about my grandkids, and how they’ll take it. They’re active in sports and they like grandpa to come watch. I’m still kicking and fighting to stay alive.”
The longer he fights this off, the more family experiences he gets, like watching his grandkids win soccer medals at the Cherry Cup.
Johnson started teaching and coaching in 1974 at Vanderbilt, teaching fifth grade and coaching football when the Yellowjackets had 14 players, also coaching boys and girls basketball there for two years.
He started coaching at Gaylord in 1978, joining GHS as a teacher a year later, coaching football under Chad Dutcher for 15 years. He took on varsity baseball coaching duties from 1988-96, boys basketball from 1988-97 and girls basketball in 1999 and 2000.
He’s coached Gaylord’s boys golf team ever since 2000, with a short break from 2019-21. He taught driver’s education for 30 years and has been a physical education teacher at Gaylord the last 18 years, although he retired as a full-time teacher 16 years ago.
“I’ve been blessed,” Johnson said. “Being a teacher and a coach has made my life. It’s something I don’t need to do, bit I love it. We have great kids and great parents.”
He officiated softball and baseball from 1974 to 2009, when golf seasons switched along with volleyball. He’s refereed basketball for 49 years, typically calling about 50 games a season, and wants to reach 50 this year.
Johnson refereed 11 Final Four basketball games and one state championship game. He had three other title games lined up before various reasons canceled them, like one year when the MHSAA overbooks refs.
Traverse City West golf coach Todd Hursey first met Tom Johnson in the mid-90s, coaching an AAU basketball team that Luke played on. He recalled the team camps Tom would run at Gaylord High School, and how well planned out they were.
“He is all about the kids, that’s for sure,” Hursey said. “I’d call him a model of selflessness. When he’s going through a struggle, he’s still there for the kids and coaching every day.”
He’s since coached against him in basketball and golf, and had Johnson as a referee his games many times.
“Officiating is such a tough job,” Hursey said. “Through all of it, that seems like the first thing to let go of.”
Not so for Johnson, who wants to hit the 50-year mark of officiating basketball.
Even after the cancer diagnosis last year, he reffed a handful of games, including a freshman contest between Elk Rapids and Gaylord.
He plans to coach golf one more year.
“It all depends on my health,” Johnson said. “Why do I want to do it? I don’t know. We have great kids and it’s fun. It gets me out of the easy chair.”
Johnson, 72, was inducted into the Greater Otsego County Sports Hall of Fame in 2013 and is being inducted into Michigan Interscholastic Golf Coaches Association’s Hall of Fame in August in the same four-person class as Traverse City St. Francis’ Jim Hornyak.
Tom Johnson, who went to Central Lake through fifth grade, played and coached in three different gymnasiums at Gaylord. The current GHS gym now bears the name of his wife’s father, Jim Mongeau.
His wife of 52 years, Jennifer, makes a scrapbook for every one of his athletes.
TC Central coach Lois McManus is a Gaylord native, and went to school with Johnson’s wife from kindergarten to age 10.
“I haven’t seen any difference at all,” McManus said. “He’s still Tom. He still smiles. He doesn’t gotten out on the golf course quite as much as he’d like to, but he’s still pushing and encouraging those boys.”
Doctors labeled his cancer as stage three, and luckily it hasn’t spread. After a three-month break in chemo treatments, he’ll head back to Henry Ford Hospital for a CT scan and MRI to see if the tumor has expanded of not. If it hasn’t spread, he’ll get another three months off from chemo and go through the same testing process.
For now, Tom said he’s feeling good and trying to get stronger and put some weight back on, after dropping from 183 pounds to around 140.
“Biggest thing is my strength,” Johnson said. “I’ve lost 40 pounds. You can’t believe it. It’s so draining when you lose that much weight.”
With chemotherapy came all the complications it can bring.
After starting chemo, he developed a condition where he couldn’t drink cold beverages. He takes oxyplatin for foot neuropathy.
Johnson has a net in a pole barn on his property, and allowed Blue Devils players to use it for practice during the winter.
He’d watch from a pickup truck as his players hit the driving range, because he couldn’t be outside in the cold. He couldn’t go outside from November through March, because he couldn’t risk catching a cold in his condition. He wore ski cap all the time over winter.
Johnson’s teams have won 57 times and finished in the top four 163 times in 239 tournaments during his tenure. Gaylord won the Big North Conference Championship in the 2017, 2018 and 2019 seasons and, a district in 2013 and regionals in 2017 and 2018, while the Blue Devils have had the team or individual players at the state finals 13 times.
Tom was recognized as the MIGCA District Coach of The Year in 2013 and MIGCA Regional Coach of the Year in 2002, 2014 and 2017.
First-year Gaylord golf assistant Max Backlund, 32, played for the Blue Devils under Johnson from 2006-10.
“He’s only brought it up with the team and me a couple times,” Backlund said of the cancer diagnosis. “He tries to keep it away and focus on the golf. He’s non-stop. That helps.”
Johnson sits on a lawn chair during practices.
“Every practice, he says, ‘I’m going to leave in 10-15 minutes,’” Backlund said. “Then he’s the last one there.”
Johnson said most years Gaylord is fighting for third in the Big North Conference behind Central and West, but that doesn’t take anything away from the Blue Devils.
“You have to take the good with the bad,” Johnson said. “You don’t work any less, but there’s time to have fun when you’re not as good as the other guys.”
Johnson gives all his golf coaching salary to his assistants.
“He’s out on the golf course every second he can be out there,” McManus said. “So that’s a good thing.”
Blue Devils assistant golf coach Chris White’s three kids — Steven, John and Jack — all played for Johnson.
“I know it’s always on his mind, but he does a great job of making everyone comfortable, which is probably why he’s such a great coach,” the 57-year-old White said. “We have one of the best coaches out there. He comes so prepared. I can’t say enough about the man. The encouraging side of me says maybe Tom beats this.”