Surviving CancerThe Lance Armstrong Story
Joyce Kulhawik and the Daffodils
Doctors Get Cancer, Too
The Last Lecture
Resources for Cancer Survivors
It is encouraging to know that some cancers can be prevented. It is even more encouraging to know that millions of people who have been diagnosed with cancer are living full and satisfying lives. Among cancer survivors are many celebrities: athletes, political leaders, prominent businesspeople, musicians, stage and movie actors, and TV personalities. Some of these rich and famous survivors have used their wealth and status to help other victims of cancer. Their stories are inspiring, but so are the stories of the millions of less well-known cancer survivors who have battled cancer and refused to let it control their lives.
The Lance Armstrong Story
In May 2008, when Lance Armstrong was named one of Time magazine's “100 Most Influential People,” Elizabeth Edwards— mother of four, author, breast cancer survivor, and wife of former presidential candidate John Edwards—wrote this tribute:
There is no one else quite like him. And there probably never will be. The best cyclist ever, Lance Armstrong won the sport's premier event, the Tour de France, an almost incomprehensible seven times from 1999 to 2005. But before he could do that, in 1996 he had to beat back a cancer that was supposed to take his life. Testicular cancer had spread to his abdomen, lungs and brain. Grim-faced doctors told him he had no chance. But “no chance” were not words that had meaning for Lance.13
When Lance Armstrong was diagnosed with testicular cancer in 1996, his symptoms were some pain in a testicle and coughing up some blood. He underwent an ultrasound examination that revealed a testicular tumor. Then he underwent chest X-rays and a brain scan that revealed the cancer had spread to his lungs, stomach, and brain. After two surgeries to remove the cancerous testicle and the two metastatic cancers in his brain, he underwent four cycles of chemotherapy. He suffered the usual side effects of nausea, hair loss, fatigue, and weakening of his immune system. But once the chemo was finished and he was pronounced clear of cancer, he went back to training for his next bicycle race. Determined to put his experience to good use, he started the Lance Armstrong Foundation to provide resources and support services to people diagnosed with cancer and their families. The foundation's services include Cycle of Hope, a national cancer education campaign for people with cancer and those at risk for developing the disease. The foundation also maintains a Web site where cancer survivors share their experiences, and it provides research grants to help scientists study the disease.
One week before her wedding in 1979, Joyce Kulhawik noticed a suspicious mole on her thigh. A biopsy showed it was a malignant melanoma. She walked down the aisle with her leg in seventeen stitches, which her husband removed on their honeymoon. Nine years later, while practicing yoga, Kulhawik experienced a high temperature, chills, and abdominal pain. Doctors gave her antibiotics and two weeks later decided to operate on her appendix. Instead of appendicitis, they discovered a tumor on her left ovary. The cancerous ovary was removed. A year later Joyce experienced more pain and had emergency surgery to remove her remaining ovary, which was also cancerous.
Kulhawik is a former arts and entertainment reporter at WBZ-TV in Boston and a popular TV personality in Massachusetts. Like Armstrong, she decided to use her high profile and cancer experience to help others. In 1991 Kulhawik testified before Congress about her own cancer experience and the importance of increasing the budget for cancer research. Kulhawik herself has helped raise $10 million for the ACS. Each spring for twenty years, Kulhawik has chaired the American Cancer Society's Daffodil Days—a fund-raising drive to raise money to support cancer research, education, and service programs. During the drive daffodils are sold as a symbol of hope. In 2008, 3 million flowers were sold.
Every year Kulhawik visits schools—from day care centers to universities—hospitals, women's groups, and art gatherings, talking to thousands of people. At the schools, children dress in daffodil costumes and write stories about how cancer has touched their lives. Kulhawik tells them, “Cancer is very much a part of who I am. Basically we're all in this together. Cancer has affected every single person on the planet. Either you have it yourself, or you know someone who does, a family member or friend. Everybody has a cancer story.”14
Tyler Walton and Harry Potter
At the age of five, Tyler Walton was diagnosed with leukemia. With treatment, the cancer went into remission. But when he was eight he had a relapse, and the leukemia came back worse than before. He had a stroke, a perforated bowel, and fungus in his lungs and his brain. For almost a year, he didn't walk and had to be fed through a tube. Finally, after a bone marrow transplant from his little sister, he began to recover.
When a local newspaper announced an essay contest, Tyler wrote about his experience with cancer. “My life has not been easy,” his essay began. He told about being treated for cancer, and how his mother would snuggle with him in his hospital bed and read to him the novels about Harry Potter, the young orphaned wizard created by British author J.K. Rowling. “Harry Potter helped me get through some really hard and scary times,” Tyler said of the boy wizard who faces momentous dangers and adult-sized villains. “I sometimes think of Harry Potter and me as being kind of alike. He was forced into situations he couldn't control and had to face an enemy that he didn't know if he could beat.” Tyler's essay was one of ten winners chosen out of ten thousand entries, and he got to meet J.K. Rowling, who whispered a secret in his ear about what would happen in the next book. Tyler's essay concluded, “I know I will do fine and so will Harry Potter because good always wins against evil.”
Quoted in “Harry Potter and Tyler Walton, the Boys Who Lived,” ACS News Center, December 26, 2001, www.cancer.org/docroot/FPS/content/FPS_1_Harry_Potter_and_Tyler_Walton_the_Boys_Who_Lived.asp?SiteArea=.
Some cancer survivors try to put the experience behind them and would rather not talk about it. Others, like Louise S., are willing to share their feelings about what has been helpful and what has not. Louise was diagnosed with rhabdomyosarcoma (RMS) at the age of nine. In 1970 little research had been done on the disease, which affects the soft tissue and can be deadly. It can grow anywhere in the body, but is most often found in the head or neck, the abdomen, or an arm or leg. She and eight other children nationwide were pioneers on whom new treatment was tried.
When Louise had surgery in Dallas to remove as much of the tumor as possible, it was discovered that the tumor in her head went into the bone surrounding her right eye. Her eye was not removed, but she lost sight in it. At the M.D. Anderson Cancer Center in Houston, Texas, Louise was treated with radiation and combination chemotherapy. The chemo was an extremely experimental treatment at the time, as doctors were trying to find a combination that was effective for treating RMS. Three of her teeth were fused to her jawbone by radiation. In the spring of 2008, when she was forty-eight, one of the teeth became infected and had to be pulled. For a short time she was terrified that if anything went wrong she might lose part of her jaw. Fortunately, that didn't happen.
Louise feels that in order to survive cancer it is important for children to know the truth about their disease. She says:
Sugar coating the truth is the last thing that we need. The majority of the time, whatever the future may hold, we will probably end up having to wear it on our bodies; whether it's amputation, problems with our teeth, infertility, premature menopause, or in some cases, breasts not forming on a young adult woman. These are not things that will go away if our parents don't tell us about them, and we need plenty of time to decide how we will cope with these things when they come. My mother was very straightforward with me and that helped me to understand what I had to do to survive.
Recently, on a survey they asked the question, “How did you find your ‘new normal’?” I found that offensive because, once again it prevents us from dealing with some of the hard facts about surviving. We look different, we sound different, and we've seen an aspect of life and death that few children see. My idea of normal was the person that I had been before cancer. I knew that she was gone and I was going to have to figure out who was left.15
Laura A. considers having cancer a “gift” that changed her life for the better. In October 2004 Laura was diagnosed with high-grade chondroblastic osteosarcoma (bone cancer) of the right maxilla (cheekbone) with no metastasis. This is a rare cancer that typically occurs in adolescents, but she was thirty-eight. She received four cycles of chemotherapy followed by surgery. The treatments lasted about six months.
During the course of her treatments, she encountered physical changes, including hair loss, weight loss, and surgery scars. Since treatment, she has had to adjust to permanent changes in her body, including hearing loss and organ damage, among others. She has also had to learn new ways to chew food. The experience was physically difficult and at times very scary.
As I started my journey into “cancer world,” I was in mental shock, and even angry, but as my treatment began, that mental shock and anger changed into something unexpected. This may sound strange, but I have come to believe that my cancer was a gift. Some of the aspects of my “gift” were and are bad. In fact, I could go on and on about all the lousy things that happened to me during and after cancer treatment. But some of the aspects of my gift, or “opportunity,” were and are wonderful.
Before cancer, an outsider would have looked at my life and determined that I had a very good one—a loving husband, supportive family and friends, solid career path, good health, a nice home, a plethora of material possessions, nice vacations, etc. However, since my childhood (beginning at about the age of eleven) there began a deep feeling of insecurity and melancholy simmering in the background. I became highly critical of myself and deeply unhappy with myself, despite all the many blessings that surrounded me. Sometimes I would get so focused on the negative that I would become very depressed. Unfortunately, these negative feelings and outlook continued with me throughout my adolescence and on into my adulthood.
Cancer completely changed that. Not long after being diagnosed, I realized that I had the power to choose my attitude—to give up or fight, to be positive or negative. And although I didn't know which to choose at first—in fact, I initially thought that I was cursed and it was my destiny to die young—I fairly quickly decided that I did want to fight for my life and that I was going to focus on the positive. Some days, I'll admit, it was very difficult to do so. Having a loving and supportive family greatly helped me with this, but I was the one with the power over my mental choice and no one else. I realized that I was the one making me miserable all along for all of those years, and that I had tremendous power over my attitude and approach to life. I found that my newfound positive outlook, despite the dire circumstances, was very helpful to me, and even inspirational to those around me.
I wouldn't describe my newfound attitude as seeing the world through rose-colored glasses. I realize that horrible things happen that are beyond our control, and that I was very fortunate to find my cancer early, get a proper diagnosis, and find experienced doctors with a clear treatment plan. Not all cancer stories end as well as mine—and even this realization has made my experience that much more precious and meaningful to me.
All in all, I am so very grateful for my unwanted “gift.” I may have two more years to live; I may live to ninety, like both my grandmothers. Either way, I remind myself each day of my life that my attitude is my choice. I am going to choose to be grateful. I am going to choose to be kind and compassionate to others. Not because I think I should be, but because it makes me happy, and I hope it will be infectious.16
C.J. Howard was an athlete, running sixty-five to seventy miles a week, when he developed a bad pain in his heel. An MRI showed a small growth on the heel, and he also had a stress fracture. Doctors told him to take six weeks off from running. The next year he started running for the University of California, Irvine, and midway through the season his heel started hurting again. Another MRI showed that the growth had increased from about half a centimeter to four or five centimeters. His doctor referred him to a specialist, who scheduled him for a biopsy.
Olympic Swimmer Lives with Cancer
In late spring of 2008, just a week before the Olympic trials, U.S. swimmer Eric Shanteau learned that he had testicular cancer. “I was sort of like, 'this isn't real. There's no way this is happening to me right now,'” Shanteau said. “You're trying to get ready for the Olympics, and you just get this huge bomb dropped on you.” When doctors determined his cancer had not spread, the twenty-four-year-old athlete went to the trials and made the team. He decided to put off surgery until after he had been to Beijing and fulfilled his dream of swimming in the Olympics.
Quoted in Paul Newberry, “Cancer Can't Stop Swimmer's Olympic Dream,” Temple Daily Telegram, July 12, 2008.
On December 23, 2002, he was diagnosed with osteosarcoma, a common type of bone cancer. He went through months of chemotherapy. The treatments made him very nauseated, a feeling he hated. Then the oncologist said he needed an amputation. Howard says,
The amputation was something that, originally, I had tricked myself into thinking that I was okay with. But I wasn't always so positive during the next three-and-a-half months. I think I was lucky to have those months, and that it wasn't so immediate. I got to say, “I'm okay with it.” And I got to say, “No, I'm not okay with it.” I got to cry about it. I basically went through the acceptance process before it happened, which I think helped a lot. Because as soon as it did happen, I think my mindset changed a lot. So on April 28th, four months later, I had the surgery and was up walking the next day with crutches and everything.17
Howard's leg was amputated below the knee. He accepted the amputation as another physical challenge, just like running. After three weeks in a cast and then another three weeks waiting for the swelling in the leg (caused by the surgery) to shrink down, he got an artificial foot. It took him only three days to start walking without crutches. Then a local nonprofit organization called Fulfill-A-Dream granted his wish for a running prosthesis. He started running on the prosthesis before he had even regrown the hair he lost during chemotherapy.
In the spring of 2004, he set the national record in the 5K, and he set personal records in the 5000 meters. He ran his first 5K in twenty-five minutes, and within six months ran it in eighteen and a half minutes. Howard feels an obligation to be a positive influence on other people. He says, “I've had something that many people would describe as terrible, but it's also given me the opportunity to make an impact in other people's lives. Every time that I'm running and somebody sees me, they're like, ‘You're a major influence,’ or ‘You inspire me,’ that's what I want to do.”18
Mark Liponis was a hard-driving young doctor, focused on building a secure future for his family. It had never occurred to him that he might get one of the diseases he was treating. His parents, the children of Greek immigrants, had taught him that the path to success was created by hard work and a strong will. At thirty-six he was not prepared for the detour life threw at him—cancer.
The only ominous symptom he had was a single episode of painless, bloody urine during a late shift in the ER one night. Tests showed an apple-sized tumor in his left kidney. He was quickly scheduled for surgery to remove his kidney and surrounding lymph nodes. He was shocked to learn that the tumor had been growing for about fifteen years. Today, thirteen years after his diagnosis, he has a successful medical career. His experience has led him to want to share what he learned with others:
Standard medical treatment is just one part of overcoming cancer. Surviving is a four-part process that includes treatment, healing, prevention, and life extension. But the steps many of us associate with cancer prevention (a healthy diet, exercise, proper sleep, stress management, smoking cessation, and moderation of habits) are also critical during the stages of treatment, healing, and the years that follow. I learned that these are the most effective ways of keeping microscopic cancer cells from growing into serious tumors.19
A professor of computer science at Carnegie Mellon University, Randy Pausch was a pioneer of virtual reality research. In September 2006, when he was forty-five, he was diagnosed with pancreatic cancer. A year later, he gave a speech titled “Really Achieving Your Childhood Dreams” to a standing-room-only crowd. It was part of a series Carnegie Mellon had orginally called The Last Lecture, in which professors were asked to give a hypothetical final talk about what mattered to them most.
The speech became an Internet sensation and was expanded into a best-selling book that Pausch dictated by cell phone to Wall Street Journal writer Jeffrey Zaslow. In the lecture and in the book, Pausch discussed the experience of facing terminal cancer—and he talked about achieving dreams. He said, “How well we live matters more than how long we live…. Obstacles give us a chance to show how badly we want something…. It's not about how to achieve your dreams, it's about how to lead your life…. If you lead your life the right way, the karma will take care of itself, the dreams will come to you.”20 Ten months after giving the lecture, Randy Pausch died at his home in Chesapeake, Virginia. His book remained at the top of the nonfiction best-seller lists.
A diagnosis of cancer is a traumatic experience for anyone, but today there are many helpful resources, services, and support groups available. Patients are fortunate if they have a strong, supportive circle of family and friends. Clergy and counselors and teachers can also be of help. Internet friends who have undergone similar experiences can be very valuable in helping deal with the physical and emotional challenges of the disease. In addition, there are many national and local support groups for cancer survivors.
National Cancer Survivors Day (NCSD) is an annual worldwide celebration held in hundreds of communities each year to demonstrate that life after a cancer diagnosis is a reality. The nonprofit National Cancer Survivors Day Foundation supports hospitals, support groups, and other cancer-related organizations that host NCSD events. Traditionally, NCSD is observed on the first Sunday in June. The theme is up to the sponsoring host. For example, on June 1, 2008, in Temple, Texas, the Scott & White Hospital, the Temple Veterans Administration Hospital, the American Cancer Society, and the Susan G. Komen Foundation held a “Hawaiian Luau” for cancer survivors. Attendees wore their favorite festive tropical outfits. Activities included costume and hula hoop contests, along with other games, a Hawaiian buffet, and gifts.
Yul Brynner Lives On
A quarter of a century ago Yul Brynner was one of the most famous actors in the world. He made a number of movies that became classics. He also smoked continually, and he developed lung cancer. In 1985, knowing he was dying, he made a commercial for TV. It showed a burning cigarette with a ban mark through it, and Brynner's picture. The message was: “NOW THAT I'm GONE, I TELL YOU: DON't SMOKE, WHATEVER YOU DO, JUST DON't SMOKE.” Before his death, he also arranged for the establishment of the Yul Brynner Head and Neck Cancer Foundation, which has chapters in many states.
In addition to Daffodil Days, the American Cancer Society sponsors other activities intended to celebrate survivorship and raise money for cancer research.
Relay for Life is a fun-filled overnight event during which teams take turns walking or running laps at schools, fairgrounds, or parks. Long-term survivors, newly diagnosed patients, caregivers, and friends participate. National and regional corporations also organize teams. In 2008 Relay for Life events were held in eighteen countries around the world.
Coaches vs. Cancer is a nationwide joint collaboration between the American Cancer Society and the National Association of Basketball Coaches (NABC). It started with one cancer survivor, Norm Stewart, former head coach of the University of Missouri's men's basketball program. He began the program by challenging fans to pledge a dollar amount for every three-point shot made by his team during the season. In 1993 the ACS and the NABC adopted the idea and made it into a nationwide effort to unite coaches across the country in a mission to provide help and hope to people fighting cancer.
The Internet offers a number of opportunities for cancer survivors to find information and connect with other survivors. As with any good thing, there are dishonest people willing to put out false information for personal gain, so it is wise to check the sponsor or source of information on the Web carefully. The American Cancer Society has a Web-based service for cancer survivors at www.acscan.org. The network provides survivors and families access to live online chat sessions, virtual support groups, prerecorded talk shows, and personal stories. Another helpful resource is the fact sheet that can be obtained by contacting the National Cancer Institute. It lists many cancer organizations that can provide information about support groups. The Lance Armstrong Foundation is also a good resource for information for cancer survivors.
There are a number of camps throughout the United States that provide activities that give children who are fighting cancer relief from the frustrations of being treated for cancer and an opportunity to feel like a normal kid again. The Hole in the Wall Gang Camp, founded by actor Paul Newman, offers nine summer sessions free of charge. This superbly equipped Wild West hideout in Connecticut hosts more than one thousand children from ages seven to fifteen each year.
Camp Ronald McDonald for Good Times conducts summer and winter camps for young cancer patients as well as spring and fall family camps for families who have a child with cancer. Sibling camps provide the same fun and support for the brothers and sisters of cancer patients. Swimming, horseback riding, hiking, backpacking, and other activities are adapted so that each child is able to participate.
Sometimes when a cancer patient loses his struggle with the disease, the memory of his fight survives and lives on to inspire others. This was true of Brian Piccolo, whose story was made into a TV movie in 1971. In high school, Piccolo became a football star. Then he signed a free-agent contract with the Chicago Bears. He dreamed of becoming a great NFL running back. But just when he seemed to be within reach of this goal, he had a series of injuries, including a ruptured cartilage and a pulled hamstring. The other obstacle was his good friend and roommate, Gale Sayers. Sayers was such a superstar as a running back, Piccolo had to settle for being Sayers's backup most of the time.
When chest pains and a persistent cough grounded him, Piccolo had a chest X-ray that revealed a tumor in his lung. When he underwent surgery to remove the malignant tumor, doctors found that it had spread. He began chemotherapy, and in the spring of 1970 his left lung and left breast were removed. He told reporters he would return to play football again. When Sayers won the NFL rushing title and was honored at a ceremony in New York, he told the audience that Piccolo was the one who should be receiving an award. His best friend, he told them, had the heart of a lion and a rare form of courage. A few weeks later, Piccolo was readmitted to the hospital with chest pains, and he died soon after.
The movie Brian's Song, which tells Piccolo's story, became a classic overnight. Since 1971 it has been remade and expanded, and generations later people still shed tears at this moving story of friendship and courage. Since his death, the Brian Piccolo Cancer Research Fund has raised more than $5 million.
Many celebrities whose family lives have been affected by cancer use their fame to raise awareness of cancer. For example, supermodel Cindy Crawford makes appearances to raise awareness of pediatric cancer. Her younger brother, Jeff, died of leukemia in 1975, before his fourth birthday. Crawford is the honorary chair of Kids with Courage, which held its fourth reunion of childhood cancer survivors June 5, 2008. Jeff was a patient at University of Wisconsin Children's Hospital, and for nearly twenty years his sister has contributed time and money to the university's pediatric oncology program.
Across the nation and around the world, there are numerous foundations and individuals working to raise funds for cancer research in the names of cancer victims. And numerous scholarships have been established in the names of cancer victims. These scholarships provide opportunities for young men and women who will go on to be teachers and researchers, and perhaps discover ways to finally defeat this devastating disease.