Friday, November 9, 1990
It could have been a scene out of any happily ever after story. The Harpham family rises for another busy day of work and family. Wendy Harpham, MD, 36, leaves before daylight for her office and a busy, joyful day of seeing patients in her solo practice in internal medicine. Ted Harpham, PhD, 39, readies their three children for the day, dropping off 5-year-old Rebecca at kindergarten and 3-year-old Jessica at preschool on his way to a day of teaching political theory to undergraduates at the University of Texas at Dallas. The youngest child, 1-year-old William, spends the day with a babysitter until his dad returns home with his sisters to begin dinner.
Saturday, November 10, 1990
Wendy arrives home early from a medical meeting because the mild pain in her groin that began a week or so earlier has become so severe that she can’t sit any longer. “There is something seriously wrong,” she tells Ted. They stop at the park to explain to the babysitter that they are going to the emergency room. Wendy is admitted an hour later for pain management and evaluation.
Wednesday, November 14, 1990
Surgery on Monday revealed non-Hodgkin’s lymphoma. Debulking the tumor in her groin, which had been pressing on a nerve, did not relieve the pain. Further tests and another surgery determine it is stage 3, meaning the cancer is in numerous places. Chemotherapy will start soon after discharge, but no cure exists. Ted calls his mother before leaving the hospital, asking her to come immediately. His first stop is a medical library, where he will try to understand the illness that has struck his family, before returning home to three small children who want to know about Mommy.
Wendy Harpham recalls with clarity the moment she decided to be a doctor. As a teenager, she was often at the home of her friend, Pam, and Pam’s mother, who suffered from severe rheumatoid arthritis. One particular weekend, Wendy watched Pam’s mother struggle with uncontrolled pain, and was touched by the family’s anxiety and confusion. Did the doctor even understand the issue, they questioned? At that moment, young Wendy Schlessel knew she would be a doctor, a vision that kept her focused through her education at Cornell University and medical school in Rochester, New York.
She didn’t want to write six books or speak across the country about cancer survivorship. Indeed, being a public person wasn’t appealing. But that’s what she chose when cancer made practicing clinical medicine impossible as she dealt with recurrence after recurrence, seven total over a span of 15 years. She closed her practice while struggling to find the “new normal,” and at the same time became one of the early voices of cancer survivorship in the country.
Indeed, with the precision of a practiced healer, Wendy put thought, experience and conscious application into transitioning from one kind of healing to another, providing a roadmap for those going through cancer so that they may become what she calls “healthy survivors.”
As Wendy began treatment she found solace in the sleepless hours brought on by pain and anxiety by writing—not for herself, but for her patients. Her first book, Diagnosis: Cancer, written during her first round of treatment, began as a pamphlet for her patients about what to do when diagnosed with cancer. It was published not long after she experienced her first recurrence in 1992.
It is now and always has been about her patients, not only the ones she had to tell that she could no longer be their doctor, but also the thousands more who now look to her through her books and speeches to guide them through the next day, week and month after hearing the word cancer. She describes it as “Dr. Harpham learning from the experiences of patient Wendy,” and relaying insights and advice to those who need it. It is not, she will tell you repeatedly, about her. “My first charge,” she says, “is helping people see that it is possible to be happy and then give them the tools to find what works for them. What is hard as a writer and a very private person is finding the balance of telling enough personal stuff that it’s real and inspiring to them so they can listen, yet encourages them to be thinking about themselves, not about Wendy.”
CURE is the first publication invited to look at the Harpham family and its journey with mother Wendy and Dr. Harpham as it has evolved over the past 15 years. In part, the decision was based on her seventh recurrence in November 2005, which, after seven years of remission, put the family in cancer mode yet again. And the understanding that today there will be hundreds of families who are asking, “How do we do this?”
Healthy survivorship has a clear definition, Wendy says: “A survivor who gets good care and lives as fully as possible is a healthy survivor.” After seeking good care, Wendy addresses the other issues of healthy survivorship: Defining and addressing major and minor symptoms and emotions to find a sense of what can be controlled; finding a balance between hope and acceptance; preparing for a likely outcome while hoping for the best outcome. In other words, choosing life and living until you die and not a day sooner.
While it may sound simplistic, Wendy’s life and family attest to the energy such commitments create. From the moment of diagnosis, her choices have been not only for herself but also for her husband and children. “Ted and I started at very different places,” she says. “I spent my training and practice seeing good people come in with terrible diseases, so I said, ‘Why shouldn’t this happen to me?’ ”
Ted had no such exposure to catastrophic illness, but as a philosopher, he explored the more existential issues. What resulted was a family in crisis that had to turn on a dime from one dynamic to another while raising three small children.
Ted doesn’t like to think about the disease that occupies most of his wife’s time. But he is willing to concede that there are helpful tools that he and Wendy have used to navigate what seemed at one time to be a never-ending string of recurrences with a major side effect—chronic, cancer-related fatigue.
Best friends since he was her teaching assistant in a political theory class at Cornell in the mid-’70s, “the Doctors Harpham” began cancer with a partnership that allowed both to be successful while raising a family. Ted’s professorial duties allowed him more time to handle parenting, while Wendy’s 12-hour days left time for little else. Ted describes it as going from normal to over a cliff because of the speed with which they had to begin treatment because of Wendy’s pain.
“Cancer forces you to make choices you don’t want to make under conditions you don’t want to make them,” he says, adding that it was constant communication about all the possibilities that got them through years of crisis management. The couple reached an agreement about her practice after Wendy’s initial diagnosis. “Her goal was to get back to her practice, but if she recurred, we agreed she would close it down. That was a compromise,” says Ted.
Wendy and Ted also agreed they would never lie to their children who were 1, 3 and 5 at the time of her diagnosis, but it was Ted who had to explain things in a way that would be truthful and not too frightening, including why they couldn’t see their mom. “When her white cells were down to zero, her life was threatened,” Ted says. “Literally, hugging could be a death sentence. I was a mean, mean daddy when they tried to go into her room.”
Both Ted and Wendy recall the time when Wendy rushed to William after he bumped his head and Ted immediately screamed at her to go back to her room. Wendy recalls the later discussion when Ted said, “You know I can handle the kids and all the other stuff but I can’t handle you making it harder by doing things that can hurt your health.” Ted reassures others that it’s normal to get angry, reminding people that no one can handle such experiences and not make mistakes.
As the family matured and moved into a time of extended remission from 1998 to 2005, the Harphams adjusted. The children thrived in sports and the arts, with a mom who was as involved as any other parent but with the understanding that fatigue had to be factored in. Wendy continued speaking around the country and writing books and a regular column for Oncology Times. Ted published numerous books in the field of political theory, public policy and American government.
When Wendy recurred yet again in late 2005, Ted says that the pieces were in place for choosing treatment. In looking back over the past 15 years, Ted’s advice is simple: Do what you have to do at the moment and don’t get caught up in overanalyzing. Focus on what is helpful to you and push forward. And that isn’t to diminish being a survivor. “The goal of healthy survivorship is to live your life. And if you have adjusted to your circumstances, you can go forward.”
To follow Wendy’s cancer experience is to read her books. After Diagnosis: Cancer in 1992 came After Cancer: A Guide to Your New Life in 1994; When a Parent Has Cancer and Becky and the Worry Cup in 1997; The Hope Tree: Kids Talk About Breast Cancer in 2001; and Happiness in a Storm: Facing Illness and Embracing Life as a Healthy Survivor in 2005. In each she fulfills her life’s mission to “help others through the synergy of science and caring.”
“Being a physician-survivor has given me a special voice,” she says. “Lots of people can talk about getting support, but I can talk to survivors about getting the best care and developing healing alliances with their healthcare team because I understand the challenges—and how to overcome them—from both sides of the stethoscope. I think I have a voice that can help people. It is not a cheerleader voice or a poetic voice. It’s a hard voice. I go to the facts and science because I believe in dealing with reality. If the situation is bad, say it’s bad. But then ask, how can we make it the best it can be for what it is?”
Wendy says it took her years to figure out what is now very obvious to her: There is no one right path to healthy survivorship. There is a best answer for each person, and her job is to educate people on the tools available to find the best path by using her own experiences.
Not a “stay positive at all costs” type, Wendy says pessimism, hopelessness, anger and sadness have all played roles in her fight to find happiness after cancer. “I live what I write. It’s not like happiness is natural and that if you can get rid of all your problems you’ll be happy. Happiness is a lot of work, and it is an active process. One step is shaping your environment.”
As she says this, she looks around her study, the family’s upstairs bedroom that was to have been daughter Rebecca’s, but instead became Wendy’s study when she closed her practice. The space reflects not only the Wendy of this story but the one she was named for from the children’s story Peter Pan. Children’s artwork, cards, angels and other precious mementos cover the bright pink and purple walls, painted, she points out with a wink, when Ted was on a business trip. A collage above the computer holds pictures of friends who are part of the village that has cared for her and inspired her. A mobile of family pictures hangs from the ceiling. Just as she chooses bright colors to wear, she chooses bright colors for her environment because, she says, “they make me happy.”
But the most telling room accessory is a 50-cent sun catcher hanging from a window that says “Joy.”
“Every morning I come in and open the blinds, and it surprises me,” says Wendy. “I am reminded that joy is a choice.”
Finding happiness as a healthy survivor, Wendy says, means making choices—how to deal with doctors, treatment options, family issues, side effects, difficult friends, children, colleagues, pain and life in general. Here, Wendy the doctor speaks up about gathering information, communicating and making a decision based on the best information you have.
In a recent talk at Gilda’s Club North Texas, Wendy began with a slide that lists her diagnosis and each recurrence with the treatment she had. In typical fashion she jokes about the day she learned the cancer had come back yet again after seven years. “The first thing I thought,” she tells the group, “is that it can’t be cancer because I have no more room left on this slide.”
A sense of humor, she says, has helped her choose joy even in dreadful situations. An example lies in why she often wears mouse earrings to her lectures. After she recurred the second time in 1993, she was scheduled for a bone marrow transplant, but her research led to a phase I clinical trial being conducted at Stanford Comprehensive Cancer Center for a drug eventually called Rituxan® (rituximab). As the first part-mouse, part-human monoclonal antibody tested in cancer patients, it was a long shot. Her research led her to the same conflict many patients find in considering clinical trials. “I called one of the top lymphoma experts on the East coast and told him about the trial,” she says. “He told me the people at Stanford were mavericks and I was better off going with what was proven.”
After weighing the advantages, disadvantages and unknowns of her options, she decided the best treatment for her—the mother of three children—would be to try and buy time with the trial. Her decision paid off. As one of only 15 people in the phase I trial, Wendy, who had to fly to California to receive the treatment, responded unusually well to the drug and has since been treated with Rituxan four more times, twice in clinical trials and twice since the drug’s approval in 1997.
“I have thanked those mavericks numerous times,” she says, adding, “Good medicine is individualized. You work with your doctor to use the science and then you tailor your choices to your unique situation. Every time I have had a recurrence, it was a new decision but with more information.”
And the mouse earrings? Wendy wears them to honor the furry subjects that went before her in testing the drug. With the latest recurrence, her oncologist prescribed Rituxan plus an immune enhancer, a decision she’s confident about based on results reported at a major medical conference only days before she had to choose, yet again, her treatment path.
After receiving four weekly doses of Rituxan combined with seven weeks of an immune stimulator in winter 2005, scans showed Wendy is again in remission—her seventh. She has started two years of maintenance Rituxan combined with the immune stimulator, which she receives every three months. As usual, she is one of the first patients being treated with this combination in this way.
Every day, she walks into her study and raises the blinds only to be reminded that joy is a choice. She continues a busy schedule of speaking and writing. When last we talked she ended the conversation and then said excitedly, “Oh, I have started my next book.”