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I Had The Disease But I was Lucky

It’s a dread disease. The fourth-highest cause of cancer deaths in the United States, it’s usually portrayed as an unstoppable, incurable killer. it has struck some high-profile figures: Hollywood actor Patrick Swayze has been diagnosed with it. Opera star Luiciano Pavarotti and former Ronald Reagan aide Michael Deaver died of it. So, too, on July 25th, did Randy Pausch, the former Carnegie Mellon University computer science professor whose “last lecture” before a university audience became a YouTube sensation and a bestselling book.

Last March, Paush testified before a congressional subcommittee about his struggle with pancreatic cancer. Holding up a pciture of his soon-to-be-widowed wife, he pleaded for an increase in the paltry level of federal funding for research into this lethal disease. His testimony was gripping, and his battle generated a raft of news articles and media reports. And yet somehow, pancreatic cancer remains a private catastrophe — and an orphan of American medical research.

I know firsthand how devastating a diagnosis of pancreatic cancer can be. In April 2007, I started experiencing stomach pain. I saw a gastroenterologist, who ordered a CT scan, after which he sent me to the emergency room of a Washington hospital. There, on April 6, a surgeon told me that the scan had revealed that I had appendicitis — and a large mass on my pancreas. At those words, my world turned upside down.

I didn’t know much about pancreatic cancer, but I knew enough. If I had adenocarcinoma, far and away the most common kind of pancreatic cancer, I would probably be dead within six months, at the age of 38. The five-year survival rate is 5 percent. Just about everybody who has that form of the diesease dies quickly.

My dread deepened when the first two surgical specialists I saw weren’t terribly optimistic. The first one was tentative, refusing to make any solid predictions about my prognosis. The second, I felt, handed down a death sentence, saying that the mass was definitely a tumor and could very well be adenocarcinoma.

It wasn’t until April 10 that I was fortunate enough to get an appointment with Dr. John Cameron of Johns Hopkins University, the most experienced pancreatic cancer surgeon in the world. He looked at my films and asked me whether I’d recently lost a lot of weight. I told him no. And he told me that I was “going to live a long life.”

For the first time since my diagnosis, my family, my girlfriend and I were able to breathe. Today, I could be standing in Randy Pausch’s or Patrick Swayze’s shoes; instead, I got incredibly lucky. I had a rare form of pancreatic cancer, called an islet-cell tumor, that’s usually curable when caught early. It’s the same kind of tumor that Steve Jobs, the chief executive officer of Apple, had in 2004. In a commencement address at Stanford the next year, Jobs described the terror he’d felt when doctors told him that he had a mass on his pancreas and that he needed to start getting his “affairs in order.” I understood only too well what he was talking about. Having sat in a hospital room and heard that I probably had pancreatic cancer, I know what it’s like for thousands of Americans who each year are told, in essence, that they have six months to live and that there’s little that modern medicine can do for them.

A biopsy later revealed that Jobs’s tumor was an islet-cell. It was removed surgically, and his prognosis is positive, as is mine. My tumor, although the size of a large orange, was encapsulated, and Dr. Cameron was able to remove it all. But Jobs and I are among the fortunate few.

I was in the hospital for six nights after my surgery, and that’s when I realized just how fortunate I had been. One of my neighbors down the hall was a man in his 50s, also recovering from pancreatic surgery. He routinely lapped me when I walked the corridors. I was so ill I could barely walk, yet every time he passed me, this man told me to keep going. He assured me that I’d be passing him very soon.

I later learned that he had adenocarcinoma of the pancreas and that his doctors hadn’t been able to remove all of the cancer. I never learned his name, and I have no idea whether he’s even alive today. He was a nice man, incredibly brave, and he really encouraged me. So although I didn’t know him, I am inspired to tell my story in the hopes that in the coming years the investment in pancreatic cancer research will be worthy of his courage and his humanity.

The National Cancer Insitute spent nearly $600 million on breast cancer research in 2006, compared with a meager $74 million for pancreatic cancer research. In the past three years, it has provided only five grants to younger scientists who want to investigate this deadly form of cancer.

Pancreatic cancer is so lethal that it has no talented, dedicated group of survivor-advocates to organize marches, raise awareness, provide funding and shake society out of its complacency in the way that breast and prostate cancer survivors have succeeded in doing. The media, for the most part, spotlight the disease only when it strikes a celebrity. I hope to do my own part to change all that. In September, I’ll be going on a bike tour with a few friends through the Civil War battlefields of Maryland in an effort to raise money for pancreatic cancer research at Johns Hopkins.

But so much more needs to be done. Private donations will never be weapon enough to defeat this foe. The big guns will have to come from elsewhere. At a minimum, Washington lawmakers should take a first step in launching the war against pancreatic cancer and, as Randy Pausch asked, double the funding to fight this terrible disease.

By Mathew Dallek
Washington Post
Sunday, August 3, 2008

Matthew Dallek writes a monthly column on history and politics for Politico and will teach at the University of California’s Washington Center this fall.

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