The call came only minutes before the kids were due home from school. She’d been waiting for it. The pain in her bones had grown worse; the arthritis medicine the doctor had prescribed wasn’t working. They’d done a CT scan. Now she was waiting for the results.
“The phone rang and all I remember was the doctor saying something like, ‘It doesn’t look good. There are multiple spots in your bones – your ribs, your hip, your arm. Is your left arm hurting?’ I was devastated. But I had to get my guard up because I knew that Nick and Madison would be coming in at any minute and I didn’t want them to see me crying.”
Judith Girardi, 45, wife, mother and champion coach and swimmer, had first been diagnosed with breast cancer three years ago, and she had just heard the word cancer patients dread most: recurrence. Her initial fight against the disease had been tough, but with the hardest part of the treatments behind her, she and the kids were beginning to regain a fragile but growing sense of normalcy. Her husband, Bruce, always a calm and loving presence, was starting to feel comfortable thinking about the future again, too. But now, after hearing that one word—just three syllables— her life again seemed to collapse around her. Cancer isn’t easier the second time around.
More than 1.3 million people are diagnosed with cancer every year in the United States, and hundreds of thousands of them are likely to experience a recurrence. It is a traumatic time for both patients and caregivers, and a difficult one for family and friends to respond to. Ironically, it can also be an astonishing period of spiritual and psychological growth.
Cancer recurs because there are malignant cells lingering in the body that initial treatment failed to eliminate. Over time, at least one of these has multiplied, forming another tumor. Doctors can’t predict for sure whether a person’s cancer will recur, but they often can make an educated guess based on a tumor’s characteristics, such as its size, how far it has spread, the appearance of its cells under a microscope and whether they are sensitive to hormones and chemotherapy.
Most people automatically assume that a recurrence is fatal. While that is almost always true over the long haul, Julia Rowland, PhD, director of the office of cancer survivorship at the National Cancer Institute (NCI), points out that recurrence isn’t what it used to be. The recent explosion of new therapies is making it possible for doctors to manage even advanced cancer for long periods. This is an important and fundamental change for patients and their families.
“You can have metastatic breast cancer and live for years,” Rowland says. “I think that we are moving quickly to the point where many patients with metastatic cancer will be living with it as a chronic disease.” But while many people may be living longer with recurrent cancer, little is know about how they cope with it. David Cella, PhD, professor of psychiatry and behavioral science at Northwestern University Medical School and a member of the Robert H. Lurie Comprehensive Cancer Center, says recurrence is an understudied area.
“We recognize that the initial diagnosis is an important time. Patients have to make the transition from being a person who is well to being a person with a life threatening condition. They are given all sorts of messages. With recurrence, they get fewer messages. The treatment options drop down two octaves on the scale of what is possible, and it is much more threatening.”
Musa Mayer, a New York author who wrote Advanced Breast Cancer: A Guide to Living with Metastatic Disease, credited by many as the first book devoted solely to examining the lives of patients with recurrent breast cancer, says the lack of attention to the subject may reflect a shared fear of mortality, or ambivalence about the gap between the promise of new treatments and the reality of patient outcomes.
“We tend to hear about metastatic disease in
two contexts: the death of young women – that tragedy and all it inspires – and possible research breakthroughs. The actual experiences of those who live with disease and those who enjoy many years of quality life with recurrent cancer are not widely known or understood,” says Mayer.
For Judith Girardi, coping with recurrent cancer has helped her discover depths of character that she wasn't sure were there. "I didn't know I was one of those kind of people. You know, I used to go out to dinner and see people bald, and I didn't know where they got the strength to do that. I would do that now, but I don't think I would have done that then. I get told a lot, 'You are so strong; you can do this,' or 'God wouldn't give you anything you can't handle,' as if it were some consolation. Right. On the other hand, I didn't know there were so many nice people out there. My faith has gotten stronger in the last couple of years and every other thought is thanking God for something."
As more people live longer with recurrence, however, some are willing to share their stories. Surprisingly, patients often describe that experience as rich and complex, something that gives and takes at the same time, an ordeal that can be physically and emotionally draining, but also one that yields new insight and appreciation for life.
The first time patients are diagnosed with cancer, they often feel overwhelmed. The second time around, even more so. They are dismayed with the way cancer moves in and takes over even the most intimate parts of their lives, and they are devastated when they face isolation from those around them who don’t know how to respond.
“I have a couple of neighbors who avoid me like the plague right now,” says Girardi. “I think it just makes them uncomfortable.”
Although studies show that the fear of recurrence usually subsides around two years following initial treatment, it never really goes away for many patients. After all, cancer can recur 10, even 20 years after initial treatment. When it does, many patients and their families feel betrayed.
“I didn’t understand how it could happen,” says Bruce Girardi. “Judith was always so healthy. She exercised every day, ate right and followed the doctor’s treatment plan perfectly. It just didn’t make sense.”
Phil Porter, a reporter who has spent much of the past two years chronicling his fight against advanced kidney cancer in The Columbus Dispatch newspaper, understands how Bruce feels.
“What I remember hearing was that the doctor said they thought they’d got it all. I mean, I was playing basketball and golf again. I never worried too much about checkups. I thought I was going to be fine. When the doctor told me I had two spots on my lung, I just couldn’t believe it.”
|For newspaper reporter Phil Porter, recurrent cancer has meant sharing his story with an entire city. "I've learned that my illness and fears often are not as bad as others'. And there is comfort in that other people are surviving and leading healthy lives. And even those who do not survive send the message that if they can meet death with dignity and courage, you can too, if necessary. The cancer community contains some beautiful people, and I feel richer for having known them. I feel richer for understanding the beauty of every day. But cancer still is a pain in the ass."|
Part of that disbelief may stem from a lack of clear communication between the doctor and the patient when initial treatment ends. Patients may ask if therapy appears successful and if they are cured; doctors today typically say there is “no evidence of disease.” Unless patients ask for further explanation, they may interpret that to mean that they don’t have cancer any more, and not be aware of the possibility that tiny numbers of malignant cells may still be circulating in their bodies, just waiting to grow into new tumors.
For 37-year-old Kim Brickman, who was first diagnosed with breast cancer in 2002, eight months after her second son was born, the meaning of metastasis was slow to take hold. “When I was first diagnosed, I didn’t think much of it. My attitude was always, ‘We’re just going to fix this.’ I had chemo first, then surgery, and then taxol and radiation. The tumor was a big one, 6.5 centimeters. But I was sure it was something I could deal with.”
For a while, things were fine. Brickman, a music teacher, had taken time off for a hysterectomy. It wasn’t related to her cancer, only a couple of troublesome cysts. As she was being prepared for surgery, however, she mentioned to her doctor that she was having a hard time catching her breath. He stopped and ordered a chest X-ray, then a bronchoscopy.
Hours passed as she waited for the results. When the doctor appeared, she knew the news wasn’t good. “My doctor is always so upbeat. But his head was down. He told me he had disappointing news and that he was worried about me.” The cancer had spread to her lymph nodes and lungs; it had metastasized.
“At first, I didn’t understand what metastatic meant,” Brickman says. “I told him to give it to me straight. He said it meant that less than 10 percent of people in my situation live longer than five years.
“That pretty much cleared up a lot of things in my life. What I thought was important is not important. This is a totally different picture. I need to prep are to be responsible.”
Brickman is now enrolled in a clinical trial at OSU’s James Cancer Hospital testing a new drug combination she hopes will offer a more effective way of fighting her disease (see box, “Clinical Trials – A Tale of Two Sisters”).
|For Kim Brickman, recurrent cancer has meant inspiration in her classroom. "I remember the first time I wore my wig to class. I had 92 kids looking at me. So I put them in one big circle and shoved the furniture out of the way and told them they could ask me anything they wanted to. I'll never forget the one little boy who asked me, 'You mean it's just like a golf ball hanging off your boob?' I mean, here is this kid using the word 'boob' with me, his teacher! But they went on. 'Does chemotherapy hurt? Can you walk afterward? Will your hair grow back?' And then I asked them how many had someone with cancer in their families, and over half raised their hands. I think they were afraid, but maybe I helped them understand. I have this inner peace that maybe I got this to be able to teach and speak out about it. I am living with this."|
Like many couples, the Brickmans are having difficulty coping with the implications and demands of recurrence. Kim is comfortable being open about it. She says her husband is not. “The walls are back up right now. I think he is scared. He can’t handle the thought that I might die. We try to get our game face up and not get down. He’s trying too much, though. Do you know how it is when someone tries to do a whole lot of things that don’t really matter, just to keep busy? All I’m thinking is, ‘Hey, just come sit with me.’ It’s as tiring for me to watch him as it is for him to do it all.”
She acknowledges that what she may interpret as a lack of caring may in reality be an overwhelming sense of helplessness. Counseling has helped them, at least a little. Daily, she is aware of loss. “I feel my career was taken away from me. We are having a hard time dealing with a $36,000 pay cut. We are just trying to keep things as normal as possible for the children.”
The Brickmans’ anguish comes as no surprise to Sharla Wells-DiGregorio, PhD, a psychologist at Denison University, who studies couples facing cancer. Her research reveals that partners are just as stressed as patients when they hear news of recurrence. “We discovered that partners may misinterpret terms like, ‘no evidence of disease,’ and believe their loved one is fully cured. As a result, they, too, share the shock and disbelief,” she says.
When cancer strikes twice, the caregiver’s role becomes crucial because 75 to 85 percent of care takes place in the home. Caregivers have a difficult role, and they need to watch that they don’t go too far, says Pat Schmitt, director of JamesCare for Life, a comprehensive cancer rehabilitation program at OSU’s James Cancer Hospital.
“When there is a recurrence, patients’ lives get smaller,” says Schmitt. “They throw out the things they don’t need. Because of added responsibilities, however, caregivers’ lives tend to get bigger. Sometimes bigger than they need to be.”
Schmitt says caregivers can become obsessive about caregiving, perhaps from fear or from some mythology about what they think is going to happen, or even their desire to remain the most important person in the patient’s life. “Patients tend to be realistic about what they can do; caregivers tend to be unrealistic and take on more than they can handle – things like child care, bills, driving to and from appointments, negotiating family dynamics at home. It can be exhausting,” says Schmitt.
JamesCare for Life offers an eight-week course to help caregivers cope with this situation and others. Schmitt says one of the course’s most valuable lessons is that caregivers need to strike a balance between caring for their loved one and caring for themselves. The course also helps caregivers learn how to communicate with the health-care team, deal with emergencies, manage symptoms and cope with changes in sexuality and intimacy.
Still, there often comes a point when treatment is no longer helpful. It is a painful time for patients and doctors alike. Charles Shapiro, MD, director of breast medical oncology at OSU’s James Cancer Hospital, says many doctors are not trained to deliver bad news and often feel uncomfortable discussing this decision with patients. “The transition from offering another treatment to suggesting palliative care is a huge step. I try to help patients understand that although there are no more treatments for their disease, we can still do a lot to help them maintain functionality and a comfortable quality of life.”
This decision is made still more difficult because patients must often change treatment teams.
At the same time, the doctor must realize that patients may not be ready to give up hope of finding a treatment that will defeat their cancer or prolong their life.
“The physician has to walk a very narrow tightrope between scientific knowledge and hope in the face of overwhelming odds,” says Richard T. Penson, MD, who teaches communication skills to physicians at Massachusetts General Hospital. “The doctor must always be on the patient’s side, even if the patient disagrees with the interpretation of facts. A physician need not fully share a patient’s hopes or fears to respect, learn about and respond to them.”
Porter was compelled to look outside Ohio when he felt there were no more treatments that might help him closer to home. He has traveled to Houston and New York for treatment or consultation. He recently enrolled in a clinical trial in Chicago and flies there every three weeks.
“The bottom line is that treatments for advanced kidney cancer often have poor results. The best ones give a response rate of only 15 percent, so doctors sort of leave you on your own to choose what you should do. Sure, I’ve asked myself if I haven’t gone overboard in doing research and hopping from doctor to doct or. But one patient with advanced kidney cancer in Boulder is still alive after 14 years, another in Bloomington has made it five years and still another in Lancaster has made it eight. Most patients with recurrent cancer understand their lives may be shortened, but the need for doctors not to steal hope is very strong.”
Perhaps surprisingly, what frightens many patients most isn’t death but what may precede it. After interviewing hundreds of patients with recurrent breast cancer, Mayer discovered that what they fear most is becoming dependent upon others. “And that is closely aligned with loss of dignity, like losing control of bodily functions,” she says. “They are also afraid of untreated pain, and that they would somehow not be able to rise to the occasion and meet the demands of the diagnosis, that they would somehow be found lacking.”
If there is a hand of grace and goodness at work in the experience of recurrent cancer, then it surely appears in this realm. Cancer patients, to the astonishment of friends and loved ones, often talk about what the experience has given them, how it has nourished their spiritual side, helping them grow in courage and strength.
There is so much the rest of us can learn from them. Perhaps most important is that a life fores hortened can be countered by a life lived large. What Judith, Phil and Kim (along with Andy and B.J., see sidebar) all share – and act upon – is that every moment counts, no matter how mundane. Passion and joy are just as likely to be found in pulling up a patch of weeds as in sharing a cup of coffee or combing the kids’ hair.
Coping with metastatic cancer will never be easy, but this heightened awareness of the sweet, fragile and fleeting nature of life helps create a meaningful life, a life where challenge has been met, and where, ultimately, cancer has not won. ■
Written by Michelle Gailiun
Photograpy by Stephen Webster
A TALE OF TWO SISTERS
CLINICAL TRIALS A Tale of Two Sisters
Mary Andrew “Andy” Matesich and Barbara Jean “B.J.” Welker, two Dominican sisters, entered the convent together as young women 45 years ago.
Their paths diverged quickly. Matesich returned to central Ohio and later became president of Ohio Dominican College; Welker accepted teaching and administrative positions in Pennsylvania. They kept in touch over the years, but metastatic breast cancer brought them together again at Ohio State’s James Cancer Hospital.
“We were classmates, but I’m ahead of her in losing hair,” says Matesich. Matesich is enrolled in her fourth clinical trial; Welker is in her third. When Welker was first diagnosed with cancer four years ago, she was angry; she thought she had done everything to protect herself. “I tried to express my anger in ways that were OK. I went out to the garden and pulled weeds. Believe me, those weeds didn’t have a chance.” She thought cancer the second time around would be easier. But it wasn’t. “I realized I am not getting well, and that I probably was never going to be well again.”
Sr. Matesich was going through a similar experience in Columbus. She too prided herself on “doing everything right,” and she still sees herself as the image of health, “except for this breast cancer.” Matesich persuaded Welker to come to Columbus to see Charles Shapiro, MD, and the two women are united in their fight against breast cancer.
“Dr. Shapiro has assured me that he will help me make the decision when chemotherapy is no longer helpful,” Welker says. “He takes his time, and he answers every question. He is kind and gentle, and I know he is telling the truth.”
Without hesitation, both women have enrolled in multiple clinical trials.
Properly conducted clinical trials are essential for improving cancer treatment while also often helping patients. But Shapiro knows they can do even more. “They can do wonders for the soul and spirit, and make patients feel that they are truly engaged in the fight against breast cancer.”
Both Welker and Matesich celebrated their Jubilee several months ago, honoring their many years of service to the church. “We decided we probably weren’t going to be around for our 50th anniversary,” says Matesich, “so the leadership here suggested we just do it on our 45th. It was a swell party.”
Shapiro was a guest. The homily described the sisters’ service to others—service through enrollment in clinical trials.
“What motivates me is thinking of all the women in the world who do not have this disease yet, and how it might help them,” Welker says. “I may not be able to do other things at this point, but this is a way I can serve others. In a sense, it is a continuation of my ministry.”
For Matesich, it is a way to thank all the women who went before her. “I believe I am alive today because a lot of women said ‘yes’ to clinical trials. I see this as one way of paying back. Jesus said a friend is someone who lays down his life for his friends, and in a way, that’s why we chose this. I thought it was a way we could lay down our lives.”
For information about clinical trials at the OSU James Cancer Hospital and Solove Research Institute, call the JamesLine at 1-800-293-5066.