The news spread quickly among Edie's community of friends. Within hours, a 94-year-old fellow St. James congregant was banging on Edie's door. "Edie," he pleaded, "you've got to fight. Fight! Fight! Fight! Fight!" Edie started reading — everything from the Bible to Epictetus' The Art of Living — and collecting inspiring quotes from the likes of Gilda Radner and Randy Pausch, author of The Last Lecture.
She quickly concluded that, because cancer is one of the most common diseases, there was no point in asking why she'd been struck. "It was more realistic to ask, ' Why not me?' " she explains. Taking that line of thinking one step further, she considered the "terminal" prognosis she'd been given and concluded, "Yes, stage IV advanced metastatic cancer is 'statistically certain' death. But is it always?" She pauses, then answers firmly, "No."
So as soon as Dale arrived home, they dug into research on the Internet. "I knew the difference between life and death was finding a doctor who doesn't believe wholly in statistics and who would treat outside protocol when warranted," she says.
A few days afterward, she arrived without an appointment at the Stanford Cancer Institute office of George A. Fisher, M.D., a gastrointestinal oncologist who treated Steve Jobs. He reviewed Edie's records, put his arm around her and said, "I cannot cure you, but I can treat you." Fisher promptly started Edie on an aggressive combination of chemotherapy drugs, a regimen he prescribed off-label to allow her the benefit of new medicines developed to treat cancers more common than her rare adenocarcinoma of the gallbladder. Twelve weeks and four chemo infusions later, tests showed that 80 percent of the cancer was gone. Fisher called the results "stunning," but warned Edie: "Twenty percent of the cancer is still there, and it could kill you rather fast. Your liver looks like the Milky Way."
Edie and Dale kept pushing. "We just kept asking questions if we didn't get the answer we liked," says Dale.
Several physicians they consulted deemed her cancer inoperable. But Edie, who, along with experts in the field, believes that "the best hopes lie in cutting off all known avenues for the cancer to grow," wouldn't back down. Finally, considering her dramatic chemo results, Jeffrey Norton, M.D., head of oncology surgery at Stanford, agreed to try to surgically remove what cancer was left. "That was when I knew that I had a chance," Edie says.
In July 2007, Norton cut a 14-inch incision from Edie's breast to her pelvic bone and removed her gallbladder, a substantial portion of her liver and several lymph nodes.
In It's Not About the Bike, Lance Armstrong wrote, "If you can move, you aren't sick," and that became Edie's mantra. So less than 10 hours after the successful surgery, she pushed herself to get up and walk. And as soon as she could, she returned to hiking the canyons at Torrey Pines and practicing yoga, making adjustments in poses to accommodate her aches and pains.
For nearly four more years — while technically in remission — Edie continued to receive chemotherapy (79 treatments in total, 836,000 milligrams of chemicals pumped into her body). She was able to do this in part thanks to her insurance, a catastrophic medical policy that covered 80 percent of the cost of her treatment. (Being self-employed, she and Dale had opted for this plan, which is generally less expensive than overall health coverage.) Even so, the 20 percent out-of-pocket copayments amounted to tens of thousands of dollars. What's more, Dale ultimately decided to walk away from the Ukraine project, knowing he couldn't commit while assisting Edie in her battle. The results, financially, were "traumatic," Dale says. "But we are, as a family, willing to go to the end, to spend whatever it takes. That's what vows and commitments are all about."
Whenever Edie suffered a setback, she took what she calls "a spirit quest" into the wilderness. Weary from chemo in the summer of 2009, she and Dale traveled by camper van through national parks in the West. "The wilderness helps me forget everything," Edie explains. "I don't think about cancer; I feel healthy there." Twice more they headed out on camping trips, the last time in 2011 when the cancer returned.
The four tumors that signaled that Edie's disease was on the move again were first spotted in her lungs during a routine CT scan in March 2011. Then a mass showed up on her liver. "It's not a big deal," Fisher told Edie. "We'll just go in and scoop out the lung tumors. Then we'll whack out the cancer in the liver."
Next: Surgical intervention is deemed too dangerous. »