by Wayne Jonas
As I sat down to write this part of the book, my wife, Susan, and I were given the challenge of navigating this healing path again. She has given me permission to tell our story.
SUSAN
Our three-month-old grandchild discovered Susan’s breast cancer. Well, the baby did not actually discover it, but it was because of him that Susan, who was helping take care of him, found the cancer. Cradled in her arms, the baby’s head pressed against the area in her left breast where the cancer was, triggering her to notice the growth. For years, we had been looking forward to having a grandchild, and we were overjoyed when he came. However, his mother had complications after the birth and required some extra care, so my wife enthusiastically volunteered to help care for the baby as our daughter-in-law recovered. Susan loved the job, exhausting as it was, and would hold and carry the baby during the day and even part of the night.
“I think he must have bruised my breast,” she told me one evening. “I have a small sore spot where his head presses. But it is not going away.”
We both immediately suspected something more ominous. You see, Susan had had breast cancer before—twenty-five years before, and in the same location. She also had a personal and family history full of cancer. Her father had died at fifty-seven of lung cancer. Her paternal aunt and cousin had died at a young age from breast cancer.
This was also her fifth time with some type of cancer—breast, melanoma, basal cell, and squamous cell. Susan’s first breast cancer had appeared when she was thirty-five. We had three young children. We cried for days that first time. Her father had suffered a lot as his lung cancer progressed, and we were only a few years out from that experience and his passing.
We had built a treatment and healing ritual that helped her to recover and be cancer-free for twenty-five years. Now, when the MRI and biopsy confirmed another cancer—a different type of breast cancer this time, likely induced by her treatments for the first one—we had a good idea of what we were up against.
The treatments—three types of chemotherapy, a bilateral mastectomy followed by antiestrogen drugs—were going to require that Susan tap deeply into her own capacity to heal, not so much from the disease as from the therapies. As is too often the case in health care today, healing is needed as much to recover from the treatments as to deal with the disease. We are in an age of heroic medicine where there is a thin line between the benefits and harms caused by treatment. This is especially true for cancer treatments. Dealing with the disease and the therapy requires resilience and the ability to recover. We needed to tap deeply into her healing capacity.
BABIES AND GRANDBABIES
You would think that the first thing someone would think about after being diagnosed with cancer is survival. And for most this is true. Almost all of medicine and biomedical science is thrown at that issue. Finding a cure for cancer is a constant mantra in medicine; it is what drives some of our most extreme treatments. Alleviating suffering tends to take a backseat. You can see it in the response people have when they hear the diagnosis, and you can hear it in the words our culture uses to fight it—the war on cancer, cut it out, burn it out, poison it, eliminate it, get rid of it, cancer is the enemy, victory over cancer. Oncologists focus on cure data, mostly by doing large studies to calculate the five- and ten-year survival rates under various treatments. You get cured only when the disease is gone—and gone for a long time. When a patient learns she has cancer, she seeks out anything that looks like a magic bullet—something proven to eliminate the disease. Many treatments have permanent effects that people must cope with for the rest of their lives. We usually accept those treatments even if the benefits are small and the side effects large (even when eliminating the tumor is not the most important thing for us). For Susan, the first thing on her mind was not a cure—it was the grandbaby.
It was not that Susan did not want to live long enough to enjoy the child and the family and have more life for other things. It was just that she realized life was more than a quantity; it was also a quality. Because she’d experienced cancer and its treatments before, she knew first-hand the lifelong impact of chemotherapy, radiation, and surgery. And her reasons for long-term survival are different now because all our children are grown and doing well. And she knows from experience the rather modest improvement that treatments make to survival rates. Twenty-five years ago, they did not know if chemotherapy for her type and stage of breast cancer was of any benefit. Now they can tell more precisely what it would add to her chances of living over the years. Whatever the reason for her perspective, the quality of the now became as important as the probability of a later for her.
None of the physicians asked what her main goals from treatment were. They assumed she would follow their recommendations to increase survival, even by a small margin, at almost any cost. They did not ask what was most important for Susan at this stage in her life. They did not ask if she wanted to weigh the harms of treatment against the potential gains. They did not know about the grandchild. Yet it was our grandchild who dominated many of Susan’s decisions for what treatments she would undergo and when, and how she would organize her healing rituals. Without a word, our grandchild not only helped find the cancer but also was influencing its management. The dominating question for her became, how could she undergo the intensive treatments needed and also spend time caring for her grandchild? The path to this was not obvious.
TO CURE OR TO HEAL?
Susan and I have always been very different in our responses to her cancers. I, like most physicians, am a doer—always looking for something to add or manipulate in a person with the idea it will cure them. Susan is more of a be-er—weighing the value of these recommendations with her own values and desires. When faced with a challenge, my instinct is to do it all and look everywhere. If there’s a hint of evidence for benefit, I like to try it out, provided the risks are not too great. My wife, on the other hand, is a minimalist; her attitude is “Tell me what I absolutely have to do and I’ll do it grudgingly, folding up inside my shell and sleeping until it’s over.” Healing requires both responses, but not too much of either one. Most important, the response must be created by and meaningful for the person in need of the healing. The methods, whether trying out multiple treatments or holing up in bed, are all simply techniques for navigating the maze of responses when our health and life are threatened.
During her first breast cancer twenty-five years ago, the first thing she did instinctively was to reach out to friends and family and find support for her children as she underwent treatment. Fortunately, our children attended a school that was extremely nurturing to everyone in the family and took special attention to care for them during the process. Second, Susan had an older friend who became a surrogate grandmother and “adopted” us. A joyful and caring woman, she not only helped Susan through chemotherapy, surgery, and radiation, she nurtured the children as well. This support network (and Susan’s age) allowed her to undergo intensive chemotherapy and recover rather rapidly, but not without some long-term residual problems including increased weight, early onset of menopause, some cognitive impact (called “chemo brain” in the medical literature), lymphedema, and mild damage to her nerves—peripheral neuropathy, which causes numbness and tingling in the fingers and toes.
Meanwhile, I was out looking for cures. At that time, I fully drank the biomedical Kool-Aid. I was convinced that science- and evidence-based treatments were out there for cancer. I read about and collected articles and books about cancer treatments. I talked to my colleagues to get their thoughts and recommendations. I urged Susan to do many of these treatments. Often, they were not available locally. She complied for a while as we traveled around and tried many of them—me looking for a magic bullet; she rather reluctantly. Most of those treatments turned out to be useless, and some even diminished the quality of her life—and mine. At the time, I did not understand about the decline effect whereby treatments initially look beneficial but further research demonstrates their limite
d impact. I was only beginning to understand the role of the meaning response in healing.
When Susan was diagnosed with breast cancer the second time, the first thing I explored was the possible benefit of her getting other types of therapies besides the conventional chemo and surgery. I considered supplements to prevent neuropathy and chemo brain, immune therapies to prevent recurrence, and lifestyle changes—exercise and diet—for overall health and recovery. But the evidence for most of these approaches was modest or nonexistent. In addition, the local oncologists had no expertise in these approaches; you had to travel to find them. Susan had promised and wanted to help our son and daughter-in-law take care of the baby. So running off to another part of the world to try other treatments and tests was simply out of the question. Even seeking out those treatments would remove from her one of the most meaningful activities she had in her life.
“We need to find something else,” she told me, “close to home and just as good.” We then found out that advances in breast cancer management would make that challenging in a different way.
In the last twenty-five years, there have been major advances in the management of breast cancer. These new approaches are guided by genetic testing. The nice thing about genetic tests is they can help tell what the survival benefit from chemotherapy will be for many patients—so they provide that therapy for only those it will help and avoid harming all the others. Susan had those tests and hoped she would not need chemotherapy. Unfortunately, her tests demonstrated that Susan was highly susceptible to a recurrence of the tumor. New chemotherapies like paclitaxel that hadn’t existed twenty-five years before might be helpful to reduce that risk. The additional benefits of chemotherapy were modest, improving her ten-year survival chances by 7%—from 88% to 95%. Also, new and sophisticated imaging tests showed that she had atypical cells in her other breast that might become cancer in several years. Might was the operative word in this case. We had no idea whether that would happen. Between 30% and 50% of breast cancers detected by these new imaging methods will likely not advance to become problematic. We just don’t know which patients those will be, so we treat them all as if they are at high risk. Genetic testing is helping us find out which patients may benefit from treatment and which patients the treatment may harm, but there is uncertainty for many. Still, none of this was known twenty-five years ago. For Susan, however, it soon became clear what she wanted to do. Chemotherapy would reduce her chances of recurrence by 7%. The genetic tests, the abnormal findings in her other breast, and her own personal and family history of previous cancers moved her to decide that the best approach for improving long-term survival involved several rather harsh treatments. She was at high risk for recurrence, so she decided to “hit it with all barrels”—twenty weeks of three types of chemotherapy followed by a double mastectomy followed by ten years of an antiestrogen drug. She would need to tap into her 80% healing capacity just to withstand the cure. The healing would be hard.
So would taking care of the baby. How was she going to undergo all these treatments, attempt the supplements and lifestyle changes I suggested, and be with the baby? These three seemingly incompatible forces converged on her. Navigating between her most meaningful activity—being with our grandchild—and the steamroller of medical treatments that might compromise both her short- and long-term function would be daunting. How could she find the right path toward healing?
Susan was now faced with a dilemma that many of those with chronic illness often confront: the clash of two systems with very different goals. Our cure-focused medical systems are by far the dominant force, populated with well-trained experts and bolstered by the best (but always uncertain) evidence that modern medical research money can buy. Rarely does this system spend the time or money to investigate or provide care for what the whole person needs for healing—their social and emotional situation; the strength of their physical, nutritional, and mental fitness; the lifestyle and behavioral resources available to help them heal; and the value and goals they have for a meaningful life. We have no integrative health system for the delivery of both curing and healing in cancer, for bringing together evidence-based medicine and person-centered care.
Susan and I discussed this dilemma as we sat in the preoperative suite waiting to have a vascular port inserted into her chest through which she would receive her weekly chemotherapy. She lay in bed dressed only in an operating gown, with the nurses, technicians, and physicians moving in and out. They checked the marks where they would open her neck to bury the tube running into the veins. The port would be used every week to draw blood and check her white blood cell count and to deliver the three chemotherapies. How, we wondered, could she be empowered to find a meaningful path forward under these circumstances? It was not obvious. Instead of deciding what to do, she paused in the now, meditated, and listened to her innermost self. She wanted to understand how her current disease and treatment might link to her soul. As they rolled her into the operating room, she heard a song over the intercom. It happened to be a song she had listened to the summer before while walking the Camino de Santiago (The Way to St. James) in France and Spain with our daughter. The song was “All of Me” by John Legend. Suddenly, the memory of that wonderful, spiritual walk came back to her and she felt deeply loved, not just by those around her, but by her own God—even in the midst of this difficult life challenge. She relaxed and released her worries about how to solve the dilemma she now faced. As she drifted off under anesthesia, she had a flash of insight. To embed meaning into her healing and integrate it with her cancer treatment, she would need a healing space in our home. We needed to redo our bedroom.
HEALING SPACES
It may seem strange that what emerges out of a sudden, almost spiritual insight as you are rolled into an operating room is that your bedroom needs to be changed. But this type of sudden and certain insight, which my wife had come to trust, turns out to be one of the best ways to discern a meaningful healing journey. I often work with patients to find ways to increase these insights—using practices like journaling, mindfulness, or dialogue—to help align evidence with intuition and curing with healing. While joy and intuition are important parts of a person—connecting to the emotional and spiritual dimensions—a full healing response must also connect to the external dimension of a person, the physical spaces that impact the body. The physical space is often a good place to start a healing journey. Physical spaces are easy to see and change. Almost everyone knows the calming effect of a beautiful vista, a sunny day, or the sound of flowing water. We have good scientific evidence that physical spaces influences healing for many chronic conditions. And there is a growing understanding of the mechanisms in our brain that do that.
Neuroscientist and immunologist Dr. Esther Sternberg spent thirty years at the NIH investigating the links between stress, stress management, our external environment, and our mental and physical health. She discovered that the physical environment directly impacts our ability to heal, independently of what goes on in that space. While Dr. Price and Professors Kaptchuk and Benedetti have been showing us how the rituals of health care affect our brain’s ability to deal with pain, depression, Parkinson’s, immune diseases, and other disorders, Dr. Sternberg is showing us how the space itself does the same thing. In her book, Healing Spaces: The Science of Space and Well-Being, she summarizes much of that research, demonstrating how the physical environment can trigger our “brain’s internal pharmacies,” making us sick or healing our ills. She and others have demonstrated that the brain is built to respond to the place we are in—directly, continuously, and unconsciously. The brain structure at the center of our response to space is the hippocampus—a part of the brain that is key to building memories. It also determines whether the physical location we are in is safe, telling us if we need to act to get safe or can relax where we are. It integrates signals from our sensory input—what we see, hear, and smell—to create a sense of place. It also sits near and continually communicates with another bra
in structure, the amygdala, which controls emotional arousal and response—often called the fight, flight, or freeze response. Thus the hippocampus creates a sensory impression of where we are and connects it to any emotionally laden memory that determines if we should respond or relax. Think of it as the GPS of the brain, which locates us not only in physical space but also in emotional space and puts the two together. This continual arousal or relaxation response produced by where we are signals other organs—including the heart, gut, and immune system—to be on alert or to engage in rest and repair. This happens mostly outside our conscious awareness. The hippocampus reacts to where we are and influences our mind-body response by comparing our space to memories that induce either fear or safety. Through this mechanism our physical space continuously puts our body on alert or into recovery mode, emitting a steady stream of chemicals that can hurt or heal. The place we are in is a powerful pathway to inner healing.
Until the science of this process was understood, the influence of the hospital environment on our internal healing capacity was largely ignored. Hospitals were built for physicians to deliver treatments. The hospital I did my training in was a typical example. Six floors of stacked rooms—usually two to four patients to a room—adjacent to a noisy road with no parking. Doctors had their own entrance in the back, and the emergency room entrance dominated the front of the building. Sirens blasted on and off day and night. Two wings of this concrete block formed the center of the hospital; it was built with little attention to light, noise, color, air flow, or nature. When the hospital needed to expand, other wings were added—usually through long corridors extending from the main lobby. After a few of these were added on, the place became a confusing web of hallways, often without clear markings for directing patients where to go. The larger the hospital became, the more confusing it became—and it had the ambiance of a warehouse rather than a healing environment. This was the typical hospital during most of the twentieth century. Then in 1984, environmental psychologist Roger Ulrich did a pioneering study called “The View from a Window.” In that experiment, patients recovering from surgery were randomly assigned to either a room with a window view of a brick wall or a room with a window view of a grove of trees. To everyone’s surprise, patients who had a tree view did better in all ways. They had less pain and used less pain medications, needed less nursing care, made fewer complaints about their care, and recovered more rapidly—leaving the hospital a whole day earlier than those looking at the brick wall.
