Save Up To 25% When You Join/Renew
- Free 2nd membership for another household member
- Discounts on travel and everyday savings
- Subscription to AARP The Magazine
Take the new AARP Smart Driver Course!
Nothing has been viewed
What does the health care law mean to you? Your story is important. We read and learn from every story and it helps us in our educational efforts. We may even use your comments (with permission) to brief legislators, inspire readers and more. Please share your story with us. Do
En español | Just four days before undergoing a life-or-death surgery to remove the cancer that has spread to her lungs, Edith Littlefield Sundby (Edie to friends) is doing her very favorite things. She attends a 7:30 a.m. service at St. James by-the-Sea Episcopal Church, down the street from her home north of San Diego. There, she sits in the same place as always, next to the stained-glass window portraying Jesus in the olive garden. Afterward, she walks to the yoga center nearby, where she's studied for 24 years. Later, for the 30th time, she listens to Belleruth Naparstek's Successful Surgery CD. "It's very hypnotic, with guided imagery and affirmations," says Edie. "Every time I listen, I get more relaxed and accepting. Where I am now is, I'm actually looking forward to the surgery."
Sign up for the AARP Health Newsletter.
It is likely that Edie's thoracic surgeon will have to remove her entire right lung, vastly diminishing her breathing capacity and her ability to tolerate vigorous exercise. As a result, the 61-year-old, who has lived five years longer than doctors predicted when they told her she had stage IV cancer in 2007, decides she will end her day with what could be a final hike.
Wearing a turquoise T-shirt, leggings and hiking boots, Edie sets off on a mile-long stretch of seaweed-strewn beach beneath the majestic coral-colored cliffs and canyons of Torrey Pines state park. Her iPod earbuds tucked in beneath the tendrils of her pixie cut, she seems to glide over the sand. Her husband of 37 years, Dale Sundby, a technology entrepreneur, reaches out and takes her hand, keeping up with her brisk clip. "Edie's natural rhythm is always go, always energetic," he explains later. "She doesn't know any other way."
Her doctors use words like outlier, statistical anomaly, even miracle, to describe Edie, although they admit they are seeing more people with advanced cancer survive much longer than predicted. Throughout her disease, Edie has refused to give up, pushing herself and her medical team to fight, both uncommonly and aggressively. When Joseph Shrager, M.D., warned her that there was a 5 percent chance she wouldn't survive the removal of her lung — and that she'd subsequently be lucky to walk a flat mile — she told him to just go for it. "The risk for me is not going for it," she says. "And who knows? Maybe with the right music or with a different attitude or by just sauntering instead of bounding up the canyon, I'll still be able to do this afterward."
It wouldn't be the first time Edie has proved the doubters wrong. With Elvis Presley's "Only Believe" blaring in her ears, she hustles up the rocky stairway leading from the beach into the park above. At the top she turns and scans the horizon, an orange fireball of a sun diving toward the water. "Gosh, what a glorious day!" Edie exclaims. "I've been doing this hike a dozen years, and it's still a magical ritual for me. The minute I hit the sand, I feel bliss. This is how I heal."
Her voice dips to a whisper. "Ever since I came down with this catastrophic disease, I talk faster and much more," she says. "The reason is, I've got a lot to say — a lot of feelings." Her eyes moisten. "Cancer has heightened everything."
Edie, who had always described herself as "arrogantly healthy," attributed her lower-back discomfort and diarrhea to a parasite. It was March 2007, and she'd just returned to Southern California from Chennai, India, where she and one of her identical-twin daughters, Stefanie, then 18, had spent five weeks volunteering at an elementary school.
She paid a visit to a doctor, who, confirming she had a parasite, also checked to see if there was anything else. Ten days and several tests later, he summoned Edie back to his office. She was alone: Stefanie was at work; her other daughter, Whitney, was in college at Stanford University; and Dale was in Ukraine launching a new business. "You have some things going on in your abdominal area," the doctor began, "and it looks like cancer."
Sitting on an examining table, Edie took a breath and asked, "How much?" Remembering the moment today, she touches her belly. "He indicated that there was a lot. He said, 'Multiple places.' I knew immediately it had metastasized."
There were as many as 50 fast-growing tumors — in her gallbladder, where doctors believe that the cancer originated, and on her liver, her colon, her bowel and her lungs. What stood out among the details the physician offered that day was that one of the tumors appeared to be seven inches long. "Whoa," was all Edie could say. The doctor told her she probably had just three months to live. "He said the disease was incurable, with limited treatment options that would only delay the inevitable," Edie recalls. "He advised me to think about palliative care and to start planning for hospice."
Stunned, Edie stumbled to the parking lot and called Dale from her car phone. The intercontinental connection was scratchy. "Dale, I just saw the doctor, and I'm full of tumors," she blurted out. "It's cancer. I need you to come home."
For a few seconds the line was silent. Then Dale said, "OK, I'm on my way." Immediately he set out on a two-day journey to get back to Edie. Waiting for him to arrive, she at first felt sheer terror. In an attempt to gain some control, she started writing about her life. Raised Southern Baptist, she also turned to prayer. "At the end of those two full days," she says, "I reached closure. If my life was going to terminate in three months, I was very accepting of that. Of course, it's a philosophical acceptance, but I felt great peace."
Edie may have been accepting of the specter of death, but she wasn't going to stop living. She'd always been a fighter.
She grew up in small-town Cyril, Oklahoma, the daughter of struggling farmers. There were 12 children in all (more hands to pick their cotton crop), and Edie was second to youngest. In a family so large, there's no such thing as hovering parents, and she learned to take care of herself. She worked hard to up her odds of moving beyond Oklahoma, though she remains close with a circle of hometown friends, who, upon learning of her cancer battle, established a prayer group for her. "We call ourselves prayer warriors," says Ronald Janousek, a retired teacher. "Edie and her family didn't always have the best, but she never had a bad word to say about anyone. And she's one strong lady."
The summer after high school, Edie sold Bibles door-to-door to help pay for college. The typical sales rep averaged three sales per day, but Edie routinely topped that, netting a then-whopping $10,000 before heading to the University of Oklahoma. Upon graduation, she landed a job at IBM, where, in a 1975 training session, she met Dale. "We competed the whole session to be number one in the class," Edie remembers. "Dale edged me out! We were both ambitious risk takers, but we laughed a lot, too." Five months later, they married and moved in together in Moline, Illinois.
Edie was better at sales than anyone Dale had ever seen. "It's because she's mindful," Dale observes. "She doesn't waste a day." Equally charismatic, Dale ended up heading IBM's Palo Alto office just as the Silicon Valley was taking off, and Edie accepted an executive position at AT&T in San Francisco. But in 1984 they decided to leave their corporate jobs and venture out as software entrepreneurs, settling in San Diego, where, in 1988, they had their twin girls. They experienced huge business successes, as well as some failures, and never lost their drive. In 2007, with Whitney in college and Stefanie taking a year off, they were optimistic about their next project: developing a financial-services platform using software developers in Ukraine.
Then cancer came calling.
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. »
But because the liver tumor was wrapped around vital blood vessels, it ultimately turned out that surgical intervention was too dangerous. Edie didn't cry upon hearing the news; she resumed researching options.
"Whenever my mom gets bad news, she analyzes it to see how bad it truly is, then figures out the best course of action," says Stefanie. "She takes everything one step at a time."
Edie and her medical team decided to try different chemotherapy drugs and a new targeted radiation tool — the TrueBeam linear accelerator — to kill the cancer in her lungs and liver. In 2012, Edie traveled twice to MD Anderson Cancer Center to seek a second opinion from Steven Curley, M.D., a surgical oncologist specializing in liver cancer. In early August, comparing scans and seeing little change in the size of the liver tumor, he determined it was highly possible the chemo and radiation had killed the cancer there. Those findings gave Shrager, at Stanford, the green light to operate on the lung, and he scheduled Edie's surgery for a few weeks later.
On August 28, a day before the operation, Edie and Dale fly to Palo Alto and settle into an apartment provided by Stanford. In the predawn darkness the next morning, with Stefanie in tow, they arrive at the hospital's inpatient waiting room and cuddle in adjacent hardback chairs. Edie wears a cream-colored top, yoga pants and hiking boots. Looking at her iPhone, she giggles at a text that she and Dale sent to Shrager the day before that read: "Lung today, gone tomorrow!"
Soon, after Edie is moved onto a gurney, Dale and Stefanie gather round her and call Whitney, who is working on a project in Chicago. They pray together, and Edie says, "If I don't make it, keep each other close." She turns to Dale: "Tell Dr. Shrager that I want all this stuff removed. I know that he's concerned about taking the whole lung, but I take responsibility. I've had a full life. Tell him to just get it out, because if he doesn't, this is for nothing."
Edie is the first to say that there is no one path to turning the odds in your favor when battling cancer. "It's not just yoga, prayer, chemotherapy, the doctor, nor thinking positive thoughts," she says. She knows this partly because her doctors have told her they've witnessed some of the best-intentioned individuals succumb, while others — pessimists among them — survive.
Still, members of Edie's medical team agree on a few aspects of her case that have allowed her to do as well as she has. Fisher cites improvements in chemotherapy drugs. "The therapies of the past were so nasty that patients invariably had to stop them because there was no quality of life on them," he says. "The newer chemotherapies allow patients to stay in the game long enough — with a reasonably good quality of life — to round third base."
And because Edie had such a good response to chemo, her doctors were able to try to surgically remove residual cancer. "That doesn't happen very often in patients with metastatic disease," says Fisher. He concedes that positive thinking "is always a good thing, if only in that it helps you to get through the treatment. But I wouldn't fault someone who is prone to crying."
Still, the experts admit that Edie continues to surprise and inspire them. "She's one of the most dynamic, intelligent, well-informed patients I've ever had," Shrager says.
The surgery takes nearly six hours. When Shrager emerges from the OR, he is all smiles. He didn't, as it turned out, need to take the whole lung, just the upper lobe and areas of the middle and lower lobes. The pathology report on the removed tissues and lymph nodes came back negative for active cancer. "When I first saw Edie, my thought was that she was going to sprout disease everywhere," Shrager admits. "When that didn't happen, I still thought there was a 50-50 chance that I'd have to remove her entire right lung. But the chemo had wiped out the cancer. That's very, very rare."
Next: What are the odds of surviving gallbladder cancer? »
Fisher says the chance that someone with advanced gallbladder cancer that had spread as far and wide as Edie's will survive for five years is well under 5 percent. Perhaps that's why Shrager ventures to offer that Edie may have a shot at being "cured." But when Dale gives his groggy wife the fantastic surgery result later that evening, the words she hangs on to are, "Your lung capacity should be close to normal."
For five years Edie has learned to count even her smallest blessings. "With cancer, life takes on new awareness," she explains. "Everything becomes more precious — our time, family, friends, faith and even work. Cancer has allowed me to make peace."
Days later, recuperating in her Stanford apartment, Edie begins to comprehend that the surgery's success will affect her future, and she takes stock. She's looking forward to allowing Dale to return to his entrepreneurial pursuits. She wants to give Stefanie, who's wrapping up a neuroscience degree at Stanford, and Whitney, who graduated last spring as a neurophilosophy major, a respite. "Life with a catastrophic disease is catastrophic for the whole family," Edie says. "Children and spouses live every day of our illness preparing psychologically for death. The anticipatory grief is often overwhelming."
Edie also wants to give herself some time to live life apart from the disease. Early in 2013 she hopes to launch Skin Jolie, a beauty line she's been developing. But she plans to remain vigilant, undergoing regular scans and keeping an eye on a suspicious spot that has appeared on her thyroid. If the cancer grows again, she will jump into action.
Sitting in an easy chair in her apartment, Edie dumps a packet of sugar into her teacup. She smirks. "I know, sugar causes cancer!" Turning serious, she asks, "Do I think I may be cured? I wouldn't bet on it. I don't want to go there that fast. I think I'm on the path to a cure. We're getting closer."
In the end, Edie says, cancer outliers like her share one hope: that they'll survive long enough for the big breakthrough. "We're just waiting for the day we'll wake up and there'll be a headline that they've found the cure," she says. Meanwhile, as more of the friends she's met along the way at cancer and chemotherapy centers succumb, Edie pushes on. Ten days after her lung surgery, she and Dale set out for a 3.7-mile hike at "The Dish," where a steep trail loops around a radio telescope in the Stanford foothills. The surrounding undulating terrain is dotted with oak and pepper trees. Tiny squirrels burrow in the scrub brush, a deer forages on a hilltop and a tarantula scurries across the footpath.
Edie puts in her earbuds and trudges up the first incline. She admits that her lungs are burning. "Then, amazingly, I am able to breathe deeply," she says. "With Elvis singing gospel, it's easy to finish the walk. I feel so fortunate."
Standing beside her, Dale smiles. "Edie has such a life urge," he says. "I have never found anyone with as strong a will to live — never."
"I am fighting to stay alive not because I fear death but because I love life," Edie says, her voice again dipping to a whisper. "I thank God every day for this life, and I want there to be more, though that's not known. What is known is that I'm alive today, this minute. And that's pretty much what we all have — this day, this moment."
You May Also Like
Remember to go to the AARP home page every day for great deals and for tips on keeping healthy and sharp