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Boston Medical Mysteries

The coda to music lover’s bowel disease

X-rays of a normal hip joint (left) and of how Chuck’s hip may have looked after years of taking steroids. Image on right has irregular, rough femoral surface (arrows) with pockets of damaged bone, which appear as areas of greater lucency (asterisk).

X-rays of a normal hip joint (left) and of how Chuck’s hip may have looked after years of taking steroids. Image on right has irregular, rough femoral surface (arrows) with pockets of damaged bone, which appear as areas of greater lucency (asterisk).

Solve a diagnostic puzzle: this is the case of a real patient treated at a Boston-area hospital

In the halls of the hospital, doctors present cases to each other, leaving out patient names and personal details to focus on the medical facts. But sometimes, a patient’s personality, hobbies, pursuits, and dreams are inseparable from the course and treatment of his illness.

Meet Chuck — he’s 65 years old, a resolute Bostonian who has encountered waves of disease throughout his life. Most importantly, he’s a fierce audiophile. “I’ve never met a man who loves music more than him,” his music therapist at Massachusetts General Hospital told me.

When I spoke with Chuck, we explored two defining moments in his life — his falling in love with music, and then the emergence of his illness — episodes he remembers with an almost cinematic clarity.

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“I was 5,” he says, impeccably remembering his first encounter with music. “Before school started, my mother would put Django Reinhardt on the phonograph.” There were two of the jazz guitarist’s songs he and his mother loved: “Nuages,” and “Love’s Melody.” “They were beautiful songs,” says Chuck, who listens to them even now.

Like many illnesses, music probably has a genetic component. Absolute (perfect) pitch, for example, tends to cluster in families, the way many diseases do. Two generations earlier, Chuck’s maternal grandfather lived on an island off the coast of Portugal, where he played mandolin, the dobro, and banjo. He married a woman who quickly learned to accompany her husband on guitar. “Both my mother and father loved music too,” Chuck tells me, painting a picture of a childhood home filled with sound and harmony.

One day when Chuck was 23, he ran to the bathroom in severe pain. Blood poured out into the toilet bowl. “When I looked at myself in the mirror, I looked ashen, having lost so much blood,” he recalls. Chuck was diagnosed with Crohn’s disease, an inflammatory condition of the bowels. He dropped out of law school to tackle his disease.

Throughout his 30s, Chuck struggled on and off with his disease. But eventually, after years of being on prednisone and other immune suppressants, it went quiet. “I had a colonoscopy in 2001. Everything looked great, and I thought maybe I had beat this thing.”

But starting in 2007, he noticed unusual changes. Once, while walking on the beach with his friend, he remembered being unable to keep up despite being previously active and in good shape. “I started needing a cane to walk, then two canes.” He started to lose vision in his left eye, and his teeth were discovered to be severely damaged. Finally, in 2009, the bleeding began again.

What was happening to Chuck — and how might music play a role in his treatment?

The diagnosis:

Malady and the Melody: Revealed

Chuck isn’t averse to contemporary music, but he can be critical. Instead, he’s partial to British pop: “the English make pounds and pounds of melody,” he says, naming the band Swing Out Sister, whose music he describes as uplifting and positive.

Positivity is crucial, Chuck says, as though reminding himself. Soon after he began to bleed again, he drove to the hospital. A gastroenterologist offered a colonoscopy. Chuck agreed, preparing for the worst. Although the symptoms of inflammatory bowel disease had been quiet over the past decade, Chuck had lost insurance and hadn’t had a colonoscopy since 2001. The gastroenterologist returned with dismal news. “You have a really large cancer,” the doctor told him, and it had already begun to spread from his colon to his liver. A few months later, it would be in his lungs.

Although it is a controversial idea, many specialists believe Crohn’s disease increases risk for developing colon cancer; some gastroenterologists will routinely survey the intestine to ensure this process has not begun. Chuck’s other symptoms were more certainly side effects from steroids he was taking for Crohn’s: prednisone had damaged his teeth, caused a cataract on his left eye, and destroyed his hips, making walking hard.

Aside from surgery, Chuck needed chemotherapy. “I used to get really sick and uncomfortable from the chemo treatments,” he says. During one infusion Chuck had a fortuitous meeting. “I met her through happenstance,” he says, referring to Lorrie Kubicek, music therapist and director of the HOPES program at Mass. General. Lorrie, who uses harp, guitars, ukuleles, xylophones, and singing to help patients through cancer and other illnesses, suggested music might help Chuck better tolerate chemo.

“I don’t take any anti-nausea medicines anymore. Certain tones were like a balm. The music took my nausea away and put me into a dream-like state,” Chuck says, like he is describing an anesthesia.

Chuck mentions several studies that examine music’s vibrational properties, and the role of melodic structure in healing. But Chuck doesn’t think music works the same way for everyone.

For Chuck, music is an intensely personal, spiritual, and familial experience that ties him to his cancer, to his chemotherapy, to his own childhood when he listened to the phonograph with his mother, and even to his grandfather who played alongside his grandmother in Portugal two generations earlier. “Music has lifted me above my physical and psychological problems — it has been an abiding anchor for me throughout my life.”

Through music, Chuck has even lightened the prospect of his own death. “When it happens,” Chuck says with a laugh, “I want to have a recessional to a song called ‘Partners in Crime’ by Jim Brickman. Have you heard it?”

I shake my head.

“There’s two things going on melodically in the song. One is a great nostalgic sadness. The other is a gospel-like hopefulness,” he says. “That’s how I want to go out.”

Do you have your own medical mystery? Dr. Sushrut Jangi of Beth Israel Deaconess Medical Center can be reached at sushrut.jangi@gmail.com.

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