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A survivor himself, musician shares gift of hope with cancer patients

Friday, January 27, 2012 | 6:00 a.m. CST; updated 10:04 a.m. CST, Friday, January 27, 2012
Charlie Lustman high fives Julia Lamborn-Gettinger after performing for her as she gets blood and platelet transfusions Jan. 16 at Siteman West County. Lustman is a survivor of osteosarcoma, in which he lost three-quarters of his upper jaw. He now performs his original songs to cancer patients around the country. Lamborn- Gettinger, 67, of Hazelwood is being treated for a blood disorder.

ST. LOUIS — Julia Lamborn-Gettinger wasn't sure what to think when a man walked into the treatment room with his psychedelic guitar. Probably just a volunteer, providing entertainment while patients spend hours getting chemotherapy or blood transfusions.

But that changed when Charlie Lustman pointed to where she was sitting, connected to tubes and said, "I've been in that chair." Twenty-two times, he revealed.

Lustman, 46, travels to cancer centers across the country sharing any one of the 13 songs from "Made Me Nuclear," his pop album that tells his story from diagnosis to transformation. This week, he came to St. Louis.

His first stop was the Siteman Cancer Center at Barnes-Jewish West County Hospital in Creve Coeur, where he performed for Lamborn-Gettinger, another patient and their loved ones.

Lustman told them how five years ago, he had nearly all of his upper jaw removed after discovering a tumor spreading through the bone. That was followed by a year of chemotherapy. A prosthetic, which he can take out like a giant retainer, allows him to eat, talk and most importantly, sing.

That's why he was there, he explained. "After I recovered, I decided I wanted to do what I love to do."

Lustman chose to play song No. 10 from the album, "Somebody New." Those in the room tapped their feet, laughed and cried. "So I can't go back and be the angry man ...," he sang. "Now I've got a peaceful plan for somebody new."

Lamborn-Gettinger realized this guy has a message to tell. "Rock on," she cheered.

Lustman's journey started with a lump on his gum. A biopsy revealed it was osteosarcoma of the maxilla bone cancer of the jaw, a rare type of adult cancer (less than 1 percent of cases) in an even rarer location.

When he was diagnosed, Lustman was in the middle of making an album called "Shaya," which was named for his 3-year old son, and his wife was pregnant. He spent the next three days in marathon vocal sessions completing the album, worried he might not be able to sing, or worse, the album would be his swan song for his children.

Lustman loved playing the piano as a child and taught himself to play the guitar. Ever since seeing Elton John in concert when he was 9, he knew he wanted to sing and write songs, he said. He graduated from Berklee College of Music in Boston, wrote commercial music, toured with a band in Europe and released his first album, "The Golden Road," in 1994. But he strayed from his dream.

He renovated and reopened The Silent Movie Theater in Hollywood, near where he lived. To earn more money, he began to rent the theater. "I became an event planner," Lustman said. "I was so unhappy."

He had just sold the theater when he was diagnosed. His first question was, "Will I be able to sing?" The doctor dismissed it, he said, wanting to concentrate more on talking, eating and surviving.

It wasn't until he met the oral surgeon who took a mold of his jaw before surgery who assured him, "You'll be back to doing what you love."

Lustman's trauma is not visible until he pops his prosthetic out, which he often does, and his face slackens.

"This is to show you that whatever your mission and your dream is, it's possible," Lustman tells the patients as he hands out his CD. "Here I am, and I don't have a jaw. And I'm singing."

Lustman said the idea for his "Made Me Nuclear" album came five months into chemotherapy. He was attending a five-day counseling program for cancer patients that started to change his outlook. "I realized you could see your cancer as a journey, as an opportunity or a possibility," he said.

The retreat was held in an old monastery. Unable to sleep one night, he wandered into the sanctuary and found himself before a giant statue of Jesus. At its feet, was a piano.

Lustman placed his hands on the keys and out flowed the first song on the album, "The Call," about learning the bad news, crying with his wife and then his son asking him to play.

The night in the monastery was a message, Lustman said. "I got why I should stay longer on the planet."

Next came songs like "Made Me Nuclear" about the scan to see if his cancer had spread, "Surreal to Me" about waking up after his surgery unable to talk, and "Chemo Brain" about being forgetful during treatment. Some are funny. Others are more poignant.

Lustman finished the album exactly two years after his diagnosis. He played the songs in a theater at the City of Hope cancer center outside of Los Angeles every Sunday for three months to those who wandered by. People loved it so much, he adapted it for theater. The Santa Monica Playhouse ran his one-man show for a year.

Over the next six months, he'll visit 14 cities worldwide. And he's gotten sponsors to pay for his trips: Sarcoma Alliance, Sarcoma Foundation of America and Ziopharm Oncology, which is testing a drug to treat sarcoma. His trips raise awareness about sarcoma and the importance of participating in research.

"I wished this. I visualized this," he said. "It's how I got through cancer."

After visiting patients in West County on Monday, Lustman spent the next two days singing at a fundraiser for CJ's Journey, named for a boy who died of osteosarcoma; and at the Siteman Cancer Centers in St. Peters and St. Louis.

Before leaving Lamborn-Gettinger and the other patient, Lustman sang the next-to-last song on the album, "Do What You Love."

Lamborn-Gettinger, 67, of Hazelwood, asked Lustman to pull up a chair and then she began to cry. Five years ago, she told him, she survived breast cancer but was now back in this chair dealing with a dangerous blood disorder. But she wants to write a book.

The book would be about the four Yorkshire Terriers she rescued. It would be told from the dogs' point of view, in hopes of encouraging people to adopt dogs who need homes.

As they talked about her idea, Lamborn-Gettinger's face brightened. Go for it, Lustman told her. It's critical.

"I'm seeing it," Lamborn-Gettinger said, giving him high-fives. "I'm glad you were here."


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