Oral cancer survivor shows, tells Lawrence teens about dangers of tobacco use
- on March 5, 2010
Gruen Von Behrens was an ordinary teenage boy who grew up in the small town of Stewardson, Ill.
He enjoyed hanging out with his buddies and going on dates. He was a good baseball player who was expected to play at the college level.
“People looked up to me,” he said.
He also used chewing tobacco — about half a can a day. It was a habit he picked up at age 13 when his buddies coaxed him into taking a dip while on a camping trip.
“At first, it made me sick and dizzy,” he said.
His friends thought it was funny and coaxed him to use more.
“Next thing I knew, I was addicted,” Von Behrens said. “I was very naive about what tobacco could do to me, so it was just part of who I was growing up.”
His ordinary life turned into an extraordinary one at age 17, when he was diagnosed with oral cancer.
Doctors gave him a 20 percent chance of surviving. Four out of five people die.
Von Behrens beat the odds. At age 32, Von Behrens shares his story with students nationwide in hopes of saving them from what he has gone through. He is the national spokesman for Oral Health America’s National Spit Tobacco Education Program.
On Friday, he was at South Junior High School and spoke to about 300 Lawrence high school and junior high school students. His visit was sponsored by the Tobacco Free Kansas Coalition. It was one of nine stops he made this week in Northeast Kansas.
He began by apologizing for his slurred speech and possibly spitting on anyone in the front row.
Then, he described in great detail the physical and emotional pain that he has endured since his diagnosis.
“I am going to try to scare the pants right off you,” he said, which drew laughter.
Von Behrens said the cancer began as a white spot, the size of a pinpoint, on the side of his tongue. He didn’t give it a second thought because white spots are not uncommon among chewing tobacco users.
But, it didn’t go away.
“One day, my tongue actually split in half because the cancer was inside the tongue and then split it,” he said.
Doctors removed half of his tongue and his lower jaw. Because of radiation treatments, all of his teeth were removed, and at age 19, he had dentures. His lower jaw was replaced with fibula bone from his lower leg.
“They’ve redone the floor of my mouth, just all different sorts of things,” he said.
Von Behrens has had 34 surgeries in the past 15 years. So far, the medical care has cost $3 million.
He spent months in the hospital on a feeding tube. The 5-foot-9 athlete went from weighing 190 pounds to 130 pounds.
After the fibula was removed, Von Behrens said the pain in his leg was like holding your hand over a candle and not being able to remove it, and then multiplying that by 50.
Emotionally, it has been tougher.
“My dream of baseball was gone,” he said. “I became a liability.”
He recalled his first day home from the hospital and looking in the bathroom mirror for the first time.
“I hated looking in that mirror,” he said. “I remember thinking, ‘This sucks. Now, I am the weirdo. I am a freak. Why me?’”
He said he was depressed and ready to give up.
“I went from being looked up to, to being looked at," he said. "It’s hard to go out in public and face the criticism that you face every day. The people staring, pointing, talking.”
Von Behrens said he hates his face and voice, but is thankful to be alive.
He said 36 Americans died from a tobacco-related illness during his 45-minute speech.
There are 25,000 people under age 21 who are being treated for a tobacco-related issue.
He emphasized that smoking cigarettes can cause oral cancer, too.
“Any tobacco product that you use with your mouth can cause this type of cancer to happen,” he said.
Seventeen percent of high school students smoke cigarettes, according to the 2009 Kansas Youth Risk Behavioral Survey. Eight percent use chewing tobacco. The Douglas County youth rates are on par with the state level.
Von Behrens pointed to his face and said, “I’ve learned this lesson for you.”
“The next time you think it looks cool to smoke a cigarette or take a dip, think about my face. How cool does this look?”
Then, he fielded 15 minutes of questions.
The students were disappointed to hear his girlfriend dumped him when he was diagnosed. Von Behrens encouraged the students to appreciate their parents because they will be there when times are tough. His mother was by his bedside every day.
What about his buddies? Von Behrens said they quit using tobacco immediately after he was diagnosed. One friend almost passed out at the sight of him. The other cried and prayed out loud in Von Behrens’ hospital room that it wouldn’t happen to him.
The students applauded when he revealed that he was married with two children, ages 1 and 3. He still lives in Stewardson.
“I have a very normal life. I’ve learned that it’s not as much about what you are on the outside as much as it is about what you are on the inside. I have a beautiful wife and two beautiful kids. I live a very normal life. I just look differently than everyone else.”
Afterward, a handful of coaches and students described the presentation as interesting and compelling, including Isaias Rojo, a Central eighth-grader.
“It wasn’t just someone up there saying, ‘Don’t use tobacco.’ He visually showed what it can do,” Rojo said. “I think students will think twice before trying tobacco.”