The saw. It was the last thing Charlie Lustman remembers seeing as he was wheeled into the operating room, in the quivering moments before the wormhole of anesthesia.
It was the kind of saw that could cut through human bone—the vertebrate-defining connective tissue that the American Society for Bone and Mineral Research describes as having the strength of cast iron—and it was the biggest, baddest tool in the arsenal. It had to be; it was about to remove the left half of Lustman’s upper jaw.
“Wanna see?” he asks me during our interview, eyes sparkling like a kid about to show off his first set of stitches.
We’re sharing “war stories” outside Paia’s Cafe Des Amis, so he takes a few mischievously furtive glances. “I’ve gotta wait until no one’s looking,” he says. “Don’t want to freak anyone out.” With the coast clear, he removes his prosthetic piece—a sort of hyper-dilated denture that replaces a disconcertingly large piece of of his skull.
The flesh of his face falls limp, like an old man swooped in to possess just the left cheek of this 45-year-old, and he holds his mouth agape so I can peer into the void. Then, he pops the prosthetic back in, adjusting it with a practiced wiggle, and you’d be none the wiser but for a thin wire protruding near his right incisor.
It started as a tiny lump on Lustman’s gum line that turned out to be a rare form of osteosarcoma. “I have a one-in-400-million-diagnosed cancer,” he says, and makes the whirling onomatopoeia of slot machine sirens. “The odds are something like winning the lottery twelve times, or being struck by lighting nine times.”
But for Lustman, “why me?” quickly turned to “why not me?” as he asked himself, “Who else, if not me? My neighbor? My mother? My pregnant wife?”
From the moment he embraced his “luck,” he resolved, “I’m going to do cancer my way.” That meant redefining his identity as a musician—with or without his top jaw— chronicling his experiences in his album, Made Me Nuclear, writing a one-man operetta and embarking on his “campaign of hope,” aimed at making obstacles seem surmountable and “making cancer survival popular.”
At the end of his motivational presentations—at schools and churches and wellness centers—Lustman says he likes to take out his prosthetic, hold it up and ask, “What’s stopping you from doing what you love? What’s stopping you from finding a positive way through your challenges?”
It was March 1, 2006, when Lustman received the news “that it was all gonna change.” He was in the studio working on Shaya, a 13-track ode to his burgeoning family’s firstborn son. Little more than a week prior, a nervous periodontist had biopsied that tiny bump on his gum line, so with the jitter of impending news roiling within, he broke a cardinal rule of recording and brought his cell phone into the sound booth. It rang mid-track as he belted the song “Shayalala,” and—as he’d later write into the song “The Call”—“it felt like someone shot me.”
Uncertain survival rates aside, a malignant tumor growing in his maxillary arch seemed to spell certain death for Berkelee College of Music graduate with a career that had included commercial jingle writing and musical direction for ABC’s Mike and Maty Show.
In a way, though, Lustman did win the lottery. Cancer is expensive (I’d know; as I write this it’s been a year to the day since my own leukemia diagnosis, and I’ve spent much of it paying off the bills), but the very week Lustman got “the call” he’d also sold his business of seven years (in a morbidly ironic twist, it was a silent movie theater).
“I got a hefty paycheck and a cancer diagnosis in the same week. I went from ‘Woo hoo! I’m rich!’ to ‘Oh, God! I’m going to die!’” he remembers. “So, of course, I went online. After about an hour of being miserable and frightened, I decided never to go online again.”
Lustman is the kind of guy who gets kicked out of his cancer support group for being too supportive. “I’ve always been on the positive side of things,” he says, though he admits he first joined his support group—as many do—to gripe about the woes of chemo.
“Don’t block your fear—have it,” he says. “Go through that emotion until it’s taken you as far as you can go and then say, ‘OK, that’s one interpretation—let’s flip it. Let’s look at the polar opposite of that feeling and focus on that for as much time as you focused on it being scary.’ You’ll start to relax. It’s a therapeutic process that works for everyone and everything.”
Lustman traces his optimistic outlook to a cancer patients’ retreat in Montecito, California, which he says was “about being positive to heal yourself.” Led by the late Dr. O. Carl Simonton—the radiation oncologist who brought psycho-social treatment to mainstream medicine by preaching that “emotions significantly influence health and recovery from disease”— Lustman says the retreat “totally opened me up to a new way of seeing things.” (He also recommends that anyone experiencing illness immediately read Simonton’s Getting Well Again.)
“On the third or fourth day, at about midnight, I couldn’t sleep and got up,” he recalls. “I wandered through the night to the main church of the monastery, filled with lit candles. Nobody was there. But there on the wall was a 30-by-40-foot wood-carved Jesus on the cross. It was magnificent—and shocking—dripping blood carved of wood.”
Verging on epiphany, he says he looked up at the statue and thought, “OK. I think I got it. First of all, I think you’re cool. You preach love. You broke the rules. You sacrificed. And you brought me here tonight. Why did you bring me here?”
“I’m not a religious guy,” he injects. “I’m spiritual, but not religious. But I looked down, and under [Jesus’] feet is a piece of furniture with a tarp covering it. I pull the tarp off and there’s an upright piano—an old spinet one—and I look up and am like, ‘Yeah, man. I get it.’ So I sit down and out flows…”
Now Lustman begins to sing for me, in his sandpaper voice the tone of apple juice, “Almost everyone I’ve known has been afraid of the call / Then my phone rings and he tells me it’s all gonna change / So I listen to the doctor, but I don’t hear anymore / As he tries to explain, I’m standing unable to move…”
He finishes his song and explains, “The chords were just coming out. I finished the first verse, and I [realized] I’m supposed to write this, in song in verse, from the first thing that happened, all the way through my treatment, out to the other side, better than I was before I started.”
Back in his bunk, he says he “looked to the sky” and in response to a voice that asked him “Why you?” said, “I’m going to tell this story for others, to help them through.” He says the voice returned to him and said, “Do it. But you’d better do it. I’ll be watching you.”
“Here I am, almost for four years later,” he says. “I wrote the collection. I produced it as a Pop record. I’ve played in cancer centers, wellness communities—anywhere they’d have me. I adapted the collection as a staged, one-man operetta, and performed it for almost 11 months at a theater in LA. I’ve been working. And so he lets me stay.”
Lustman’s album and operetta are both titled Made Me Nuclear “because that’s what they did,” he says, referencing the radioactive dyes pumped through his system for the necessary bone scans.
Though the tumor was deemed isolated, after the two extensive maxillectomy surgeries, doctors informed him he’d also have to undergo 20 rounds of adjuvant chemotherapy, “just in case.”
“I’ve always been very into natural things, so I was kind of confused over the concept of chemotherapy,” he says. “Confused over the concept of destroying everything to get to the one dangerous thing.”
Again he sings to me, strumming his bright, retina-burning Martin guitar, the lyrics this time about grappling with Western convention. Ultimately he decided to opt for chemo, his thoughts heavy with his young son and pregnant wife. “They were the motivating factor in deciding to take the most lethal chemicals in the world and run them through my body for a year. But I decided, I’m was going to do the natural approach as well,” he says. “I was going to do all those things ‘just in case,’ too, so I could take chemo better than anyone’s ever taken chemo before.”
It’s then I notice the little sewn slits in biceps of his self-branded, self-designed long-sleeved T-shirt, and I exclaim, “Oh! For PICC lines?” He beams and we chorus, “For PICC lines!” and hold out our arms to compare the little dotted scars where catheters were once inserted into our brachial veins, through to our hearts’ right artiums—a chamber that churns a liter of blood every minute and makes receiving chemo (or anything) easier because aggressive chemicals never have the chance to touch the vascular wall.
He was a good patient, and kept but one PICC line for all 20 rounds. I had but four intravenous rounds, but manage to boast five pukas. It’s a fact that illustrates both our similarities and our differences as patients, and as survivors.
Lustman delves a lot into the emotional side of illness, but forever rebounds to buoyant affirmations and colorful shtick, which plays well with his most common audiences—school kids, church-goers and hospital patients. Personally, I tend to err toward the technical, mildly morbid end of the spectrum with (hopefully humorous) self depreciation as my go-to gimmick. He began making an upbeat album on the anniversary of his diagnosis. On mine, I got a skull tattoo.
“Do you ever find that people are critical of you talking about cancer too much?” I ask (it’s a fair criticism I’ve faced myself).
“Just once,” he says. “A critic reviewing the show said I didn’t put enough angst into it—[though] there’s a scene where I relive the pain of every side effect. But it’s otherwise been nothing but positive.”
I side with that critic to some degree, and find Lustman’s lyrics—while certainly honest—a tad too literal. Yet I rejoice in the fact that he creates despite and because of his ordeal, and that his life’s mission is to now spread hope to everyone, for every reason. And it works. After speaking with Lustman, I found myself reflecting on the seeds of my own resolve: When I was a teen, seeing a bald young woman sitting outside the Pacific Cancer Center, resiliently smoking her cigarettes with a bring-it-on snarl. The combat wazas taught to me by iaijutsu senseis. Being fresh off my first air ambulance, seeing room after room of gaunt, gray faces as they wheeled me into the ward I would come to call home. Promising myself then that would not be me.
“You really have the ability to control a lot of what’s going on in this show,” says Lustman. “Now they call me “NED”: No evidence of disease. I’m here and I feel great.”
He feels great because he did it his way. And he’s here to tell you that whatever your battle, you can choose your way, too.
Charlie Lustman moved to Maui ten months ago, and is thrilled that “she hasn’t spit me out yet.” He is available to perform at schools and churches and wellness centers, even corporate outfits. Also, he’s got December 18 secured at the ‘Iao, where he’ll be performing songs from Made Me Nuclear.
But, he’s quick to emphasize, “it isn’t the all-about-Charlie Lustman show.” He’s currently master-planning the event to feature local musicians, with the help of oft-missed Eha Pool Bar diva Tami Solomon. If you’re interested in joining his campaign or want to learn more, visit mademenuclear.com. ■
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