Brain cancer takes, but also gives

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One of my darkest journalism moments at the Daily News came after the massive layoffs of 2007 and 2008.  That’s when editors were scrambling to fill various sections of the paper. One of their “ideas” included shoving my health stories into a feature section which ran very fluffy health stories (like yoga positions,  diet fads, and the horoscope) once a week.  I wasn’t asked if my stories could appear there. It was just done automatically.  So I fought it. And fought. And fought. And won. That feature section was rightfully killed. Here’s one of those stories that ran in that section that sparked my anger.  I mention it, because the same story about the same organization ran front page in the Los Angeles Times recently.  From my story (February 9, 2009):

NORTHRIDGE – The poet and the painter reunited one recent afternoon to share what brain cancer has given, and what it has taken away.

Judi Kaufman said words began to flow from her mind and onto paper after a tumor stole parts of her brain. She lost her inhibitions, too, allowing her inner poet to emerge.

Mario del Valle discovered paints and brushes after cancer crept into the left side of his brain more than 10 years ago, taking away some vision and mobility on the right side of his body.

But he covers canvases with seascapes and skies in brilliant blues, posies and pansies in yellows and magentas, and bamboo stalks in bright greens, as if his left hand once belonged to Cezanne, to Monet, to van Gogh.

The disease gives and takes.

It took away their former lifestyles: running businesses and presiding over boardrooms, walking and speaking with ease, and driving. But it gave Kaufman and del Valle creativity. And, more important, friendship.

“If it wasn’t for brain cancer, I wouldn’t have known the difference between life and death, and anyone who doesn’t know the difference between life and death doesn’t know anything,” said Kaufman, who was diagnosed with brain cancer in 1997. “And I wouldn’t have met Mario.”

Kaufman met del Valle through the volunteer group Art of the Brain. Thankful for the attention and treatment she received at UCLA, Kaufman founded Art of the Brain (www.artofthebrain.org), which works to increase public awareness about brain cancer, raises money for the UCLA neuro-oncology program to continue its research, and celebrates the art produced by those who have been affected by the disease.

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The group also works as an intricate network of 50 “illness mentors” – or Brain Buddies – volunteers who help those with cancer with everyday activities.Since 2000, the organization has raised more than $1.8 million through its annual galas.Researchers are uncertain whether there is a link between brain cancer and artistic creativity.

But they do see that art becomes a positive outlet, especially because the physical changes brought on by brain cancer can be psychologically difficult to accept. And the illness can be challenging for relatives, spouses and other loved ones.

“Our brain is kind of who we are,” said Dr. Timothy Cloughesy, director ofthe neuro-oncology program at UCLA and researcher for the Jonsson Comprehensive Cancer Center at the university.

“I have always been blown away by our patients, the struggles they go through and the courage they have,” Cloughesy said. “Mario always comes to mind. Here’s a guy who was a successful businessman. But after brain cancer, he can’t speak, can’t see in his right visual field. He picked up painting with his left hand and gave me these rudimentary paintings. A year later, he had these beautifully detailed paintings, and it affected me.”

While advances in treatments continue, malignant brain tumors remain themost aggressive and lethal form of cancer, Cloughesy said. They occur in 10 to 17 per 100,000 persons. There also is some evidence that the incidence ofbrain tumors in the elderly has increased.

In the United States, an estimated 13,300 people will die annually from primary nervous system tumors, and 17,200 will be diagnosed.

“One of the things that we always talk about with cancer is the benefit ofearly detection,” Cloughesy said. “But we don’t have an equivalent of a Pap smear for brain cancer. We haven’t identified any behaviors such as smoking or dietary habits, so we have no ability to prevent it.”

Cloughesy said his team’s goal is to pursue a more individualized form ofcare to treat brain cancer, because what causes the cancer and the way it spreads differs in each person.

“The more we’re able to identify what drives it, the better we’re able to best control it,” Cloughesy said.

The drug Avastin, used in many types of other cancers, also is proving to help shrink brain tumors, Cloughesy said.

Kaufman began Art of the Brain because she found no organization that helped patients with lifestyle changes as a result of cancer. While Massachusetts Sen. Edward Kennedy’s diagnosis last year helped increase awareness about brain cancer treatments and survival, sometimes those withthe illness undergo several changes, such as difficulty speaking.

And so art speaks for some.

All around the Northridge home del Valle shares with his mother, vibrant paintings hang, proof that while he cannot tell visitors what he finds pretty, he is able to show them. Del Valle continues to struggle with the changes. As owner of his own tire business, he once drove sports cars and loved fast boats.

“I try to remind him to take it all one day at a time,” said Adriana Sullivan, del Valle’s sister.”With brain cancer comes some gifts.”

Sullivan said del Valle never painted before, though their mother, Pillar del Valle, was drawn to art when her children were older. One of Pillar del Valle’s works was reprinted on a book jacket for Gabriel Garcia Marquez’s “One Hundred Years of Solitude.”

On a recent day, Kaufman and del Valle visited in his studio. He pulled out albums filled with photo stills of his paintings. And there are photos, too, of who he used to be. He also shows Kaufman a book she wrote on brain cancer, which includes some of her poetry.

Kaufman said before the illness, she was nicknamed “Jude the prude.”But the illness loosened up her mind – and her pen, she said. Charles Bukowski, one of her new favorite writers, would blush at her work, she joked.

“My poor husband. People always say to me, ‘What kind of woman would do that to her husband by writing poems about sex?”‘

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