THE BLOG

Losing Steve Jobs to a Taboo Cancer

10/26/2011 03:04 pm ET | Updated Dec 26, 2011

Watching Steve Jobs waste away from cancer was tragic for all the reasons expressed by President Obama, Steve Wozniak, Bill Gates and millions of Apple fans online and in moving, impromptu tributes at Apple stores.

One more reason losing Steve Jobs was painful for me personally: He was cut down in the prime of life by pancreatic cancer, which killed my father at 63, despite his finishing four marathons, and my friend's husband at 57, and will mercilessly snuff out 37,000 of the 44,000 Americans diagnosed this year, leaving shell-shocked families behind.

"I didn't even know what a pancreas was," Steve Jobs said in his Stanford commencement address, referring to the day he was diagnosed with his tumor.

To this day, pancreatic cancer remains shrouded in dread and mystery, as it was when Michael Landon went on the "Tonight Show with Johnny Carson" in 1991 and reluctantly named his silent killer, the largely-inoperable cancer that typically offers no symptoms until stage IV. Pancreatic cancer continues its reign of terror as the taboo cancer, mentioned in hushed tones and with a shaking of the head, as CNN's Sanjay Gupta demonstrated the night Steve Jobs died, grimly repeating the American Cancer Society statistics: 20 percent of patients survive one year after detection. Only 4 percent of patients survive five years.

We were met with the same hopeless shaking in 1997 when we sought experts to help my father. "It's an insidious disease," one doctor tsk-tsked, ushering us out of his office with no offer of surgery or treatment to give my father a fighting chance. The doctor didn't say it, no one wanted to say it, but the unspoken message was "go home and die."

Even Steve Job's immense resources were powerless to beat this form of cancer. Even the cutting-edge work of Nobel laureate Dr. Ralph Steinman, who died of pancreatic cancer three days before the prize was awarded, couldn't save him. Amazingly, Dr. Steinman used a new vaccine against cancer, which he was in the midst of developing, to try and fight his own tumor.

It didn't work. But it can, in the future.

Research doctors like Ralph Steinman, who demonstrate the revolutionary vision that Steve Jobs is hailed for, need more support. Pancreatic cancer continues to be a death sentence partly because it is the least funded of all cancers: Of the five leading cancer killers, pancreatic cancer receives the last amount of federal funding, according to Pancreatic Cancer Action Network. And it's not a rare disease: It's the fourth leading cause of cancer death in the U.S. Recently, Patrick Swayze, Randy Pausch and Luciano Pavarotti succumbed to it.

Where there is money, however, there is progress toward early detection, treatment and a cure. Dr. Christine Iacobuzio-Donahue made national headlines in 2010, with fellow doctors at Johns Hopkins (and England's Sanger Institute), for a breakthrough toward early detection. The George Rubis Endowment, founded in memory of my father, was credited as a supporter of the study. My family's annual grassroots fundraiser, Run for George, which has raised $420,000 to date, has directly supported Dr. Iacobuzio-Donahue's efforts over the last seven years.

I'll be honest: When touring Dr. Iacobuzio-Donahue's lab at Johns Hopkins, I didn't imagine that such leaps toward understanding pancreatic cancer would be made in my lifetime. When we received news of her breakthrough, we knew: Fundraising works. Pancreatic cancer need not rob us of loved ones, need not to be a scourge on our children's generation. Just a few decades ago, breast, prostate and colon cancers must have seemed so scary and so daunting. There is reason to be optimistic.

There is also far to go.

I hope that the grief over losing Steve Jobs will transform into activism, as it did when Marc Lustgarten, an executive of Cablevision, died in 1998. Cablevision helped establish The Lustgarten Foundation to defeat pancreatic cancer: It has become the largest private foundation dedicated solely to funding pancreatic cancer research, with $38 million going to research to date. The foundation has also launched curePC, a public service campaign to raise awareness, featuring Danny Aiello, William Hurt, Jai Pausch and Matthew Modine, all of whom have lost loved ones to pancreatic cancer.

Last year at Run for George we raffled off an iPad to raise research dollars. How else to excite the crowds? This year on Nov. 20th, we'll raffle off an iPad2. This one's for you, Steve.

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