Living with Cancer
Making Your Choices
We come to the end of this book. This last chapter is an informal review of points we have discussed throughout the book organized around the question of how you approach making your choices. Following this chapter is an appendix, Choice in Resources, that discusses numerous specific options in both conventional and complementary therapies. You may wish to review that appendix after reading this chapter.
Remember, your choices do not have to be made all at once. That would be overwhelming as well as unwise. So do not think too far ahead–only as far as you need to. Many months may pass before the next choice needs to be made.
Obviously I cannot describe all the permutations you may face at each step of the way, but I would like to map out for you the critical moments of choice in the chronological order in which most patients face them.
At each point in facing cancer, you are given an opportunity to develop new knowledge, skills, and control. However, if you like, you can also make the choice not to learn too much. Some people feel they would like to leave most of the choices to their physicians.
Although the audience for this book is primarily people with cancer and the health professionals who care for them, the issue of prevention is painfully important to many people with cancer who are concerned that their children may be at risk. Perhaps the most common concerns are voiced by women with breast cancer–sometimes themselves the daughters of mothers who had breast cancer–who are deeply concerned for their own daughters. In fact, there are some very important things that can be done when children are young to lower their lifetime risk of cancer, such as providing them information concerning sane approaches to carcinogen exposures, diet, exercise, and mental health.
At this point you may have identified a lump or some other warning sign of possible cancer but have not yet seen a doctor. Enter the medical system carefully by selecting a physician who has a good reputation for both the competent and humane handling of diagnosis and for his skills in treatment. You might prepare yourself by making a list of questions and suggestions about, for instance, how you want to be told if the diagnosis is cancer; how long the test results will take to get back; and how much time you would have to make a decision on therapy, if the tests prove positive.
This is a critical point. The delivery of a cancer diagnosis by a physician is, as we have seen, a considerable art. If the delivery of the diagnosis is done badly, you may need to recover not only from the shock of diagnosis but from the way the doctor told you. Many people literally go into shock when they are given a cancer diagnosis. They may not hear anything the physician says after the word “cancer.” Bringing a tape recorder to the session is one possibility (some physicians even provide tapes of the diagnostic session precisely because recall is often so distorted by shock). In the period in which you are in shock, it is unwise for you to make choices about therapies or to allow yourself to be rushed into treatment. The best treatment for shock is to be in a warm, safe place with a caring friend and nourishing food. When you begin to emerge from shock, you will begin naturally to think about choices that need to be made. Pressing choices before that is a serious error.
Choosing a Physician and Therapy
There is no rule that the doctor who gives you your diagnosis need be your physician for treatment. Choosing a treatment physician and the initial therapy are two of the most critical choices you can make. Here are a number of points to think about:
Do you want a physician you can trust who will make all the decisions? A physician who will explain options but guide you to the choice he believes best? A physician who will explain options but be willing to share the choice with you? Or a physician who will be your consultant as you do extensive research and choose for yourself? All are legitimate approaches.
Do you want to select as your physician the first physician you contact? Do you want to get two or three opinions before you select a physician? Or do you want to shop extensively for a physician? You may have a choice among the many specialists–surgeons, radiologists, chemotherapists–as well as other therapists. A good approach is to find an oncologist that you can trust to set out your options and coordinate the other specialists.
Just how much reading and research do you want to do before choosing a therapy? Do not let anyone rush you into treatment, unless necessary (not very frequent in cancer) until you have completed your investigations.
Coping with Treatment
Coping with treatment often involves developing skills that most physicians do not discuss. One of the best resources for developing skills in coping with treatment is an independent support group where patients are supported by the facilitator in exchanging information with one another on methods for handling cancer and treatment. Patients should be able to discuss both complementary therapies and mainstream treatments. A support group is a very good place to start. One young man, who was connected with the Wellness Community in Santa Monica, decided to organize his own support group before entering a particularly severe treatment–interleukin-2–for a recurrence of his malignant melanoma. He talked with them about ways they could help him best with the 6 weeks of excruciating treatment. They were then able to organize visiting times and to respond to his requests “to talk to me” or “just play me some music” or “just sit here, saying nothing,” etc. Pain and disorientation can be greatly diminished when friends and family know just how they can help best.
Complementary Cancer Therapies
Choices in complementary therapies are even more difficult than choices in conventional therapies because of the relative scarcity of evidence with which to assess different options. Complementary cancer therapies include spiritual, psychological, nutritional, physical, pharmacological, herbal, traditional, and the other approaches I have described in previous chapters.
Since I have already discussed complementary therapies at length in this book, here I will simply remind you of a few rules of thumb in searching for these therapies:
Never try to force an alternative or adjunctive therapy on a family member or friend who is not interested. Remember, this is their cancer, not yours, and the point is not to convince them that they should do what you might do. Find out how you can help them. You may think that the way for you to help is to convince your parent or friend to try macrobiotics or visualization. But, for your mother, it might be more meaningful for you to come home for weekends while she goes through therapy. Ram Dass’s book How Can I Help? is an exquisite discussion of this point.1 We rarely help by forcing our vision on others. We often help simply by listening carefully, by asking how we can be of help, and by responding to the needs we are able to respond to.
If you are choosing for yourself, or helping an interested friend or family member choose, remember the distinctions I have made between open and closed therapies, between intrinsically health-promoting therapies and those that are not obviously good for you in some reasonable way, and between the therapy, the practitioner, and the service delivery. The safest choices are among open therapies that are intrinsically health-promoting. The safest practitioners are credentialed practitioners charging reasonable fees who deliver the promised therapy effectively and professionally. These are what you might call “no regrets” therapies–practices that you would not regret having undertaken whatever the outcome. As you go out from this safe inner circle into riskier areas, such as closed therapies that involve secret formulas, therapies that are not intrinsically health-promoting, therapies that operate by less validated principles, therapies where you do not fully trust the practitioner or for which he is not credentialed, or therapies where the service delivery is expensive or unprofessional or both, you move into areas where choices should be much more carefully weighed.
If you are considering one of the more expensive therapies offered at one of the well-known alternative clinics in Mexico, the Bahamas, Germany, or elsewhere, I believe it is usually worth going there first and checking out the clinic or practitioner before agreeing to enter the therapy. This enables you to talk to the patients who are using the therapy, and to take a few days to think about it, as opposed to signing up for an expensive therapy that you have only read about. Ask the practitioner for the names and phone numbers of some patients you can talk with, and try to get some other names and numbers independently, either from the list of those previously treated by the practitioner or from one of the alternative cancer information networks. I am particularly put off by clinics that follow up your initial contact with them with repeated phone calls and a hard sell, sometimes using scare tactics.
It is also worthwhile, especially for those who tend to be enthusiastic about alternative therapies, to check out what the mainstream cancer organizations have to say about the therapy. I would ask the American Cancer Society and the National Cancer Institute for their statements, if any, on a therapy I was considering. The Office of Technology Assessment (OTA) report Unconventional Cancer Treatments is a major resource, describing many of the therapies more objectively than any mainstream organization has in the past. Then go to a medical library, and ask the research librarian to do a search of the cancer literature under the name of the practitioner or the therapy, which may yield both positive and negative reports in the peer-reviewed medical literature.
A guide like Third Opinion by John Fink, perhaps the most comprehensive “tour guide” to alternative cancer therapies presently available, may be the best starting point. While Fink’s general orientation is in favor of the complementary therapies, this book contains a great deal of useful information and was used extensively by OTA researchers in the preparation of their report on unconventional cancer treatments.
Because there is no reliable cure for cancer among the unconventional cancer therapies, it should go without saying that one should be sure that mainstream therapies do not have an efficacious treatment for the kind of cancer you have before embarking on a purely unconventional course of treatment. From time to time I meet people with cancer (Hodgkin’s disease, for example, or early-stage breast cancer) who could have achieved a highly probable cure, but spent months or years pursuing alternative therapies at great risk to their health. Most people instinctively take the wiser course of seeking to integrate the best of conventional and unconventional cancer treatments, only turning to purely unconventional treatments if potentially curative conventional therapies are not available.
If you do undertake an unconventional cancer therapy, it is wise to keep yourself under the care of a competent mainstream oncologist. An increasing number of oncologists are willing to monitor patients while they undertake unconventional courses of treatment, especially when they are convinced that the curative conventional treatments have been exhausted and that the unconventional therapy seems unlikely to do harm. The oncologist will also be aware of palliative conventional options that you may wish to keep in reserve as you explore the unconventional course.
Knowing when to stop an unconventional course of treatment is very important. In psychological therapies, a psychotherapy that does not instinctively feel right to you is rarely helpful. And it is a very poor sign when a psychotherapist insists that you “caused” your cancer and can therefore just as surely reverse it if you want to. In nutritional therapies, as indicated repeatedly in the chapters on this subject (see part IV), uncontrolled weight loss that does not result in a stabilization of weight at some reasonable level–like high-school or college weight–is reason for real concern. It is also reason for concern when an alternative therapist repeatedly reassures you that every worsening of your physical condition is a “healing crisis” that is to be expected as a positive result of treatment. The theory of healing crises as elements in naturopathic treatments is accepted by many alternative therapists, but it is a perilous theorem that can be exploited at great hazard to your health by the unknowledgeable or unscrupulous practitioner.
Having urged these cautions for unconventional therapies (just as I have for mainstream therapies), the bottom line for me remains that the exploration of ethical complementary cancer therapies remains a viable option for people with cancer who want to do so. I have a strong belief that spiritual, psychological, physical, nutritional, and sometimes traditional therapies can enhance quality of life, and possibly extend life, for people who believe that they may be helpful.
Most cancer pain–either from treatments or from the cancer itself–can be controlled, and the fear of being caught in unendurable pain is largely unfounded. To this end, it is worth exploring both conventional and complementary systems. Here are the principle guidelines:
Most cancer pain is not as well controlled by doctors as it should be. Doctors receive little education in pain control in medical school, and the underuse and unskillful use of pain control medications by physicians is widely considered a national scandal in medicine.
Physicians associated with hospice programs are likely to be the most expert in the effective use of pain control medication, and you do not have to be dying to get their assistance in designing an effective pain control program. Call your local hospice office to see if you can make an appointment with one of their doctors.
Unconventional approaches to pain control can also be very useful and often have fewer side effects than drugs. These approaches include traditional Chinese medicine (acupuncture and acupressure), visualization, meditation and breathing techniques, psychological counseling, and behavioral training.
Understanding the difference between physical pain and human suffering can make a difference in the best response to both. Suffering is the psychological experience of loss that can create or enormously augment physical pain. Suffering is just as real, and just as important, as the physical basis for pain. When suffering is directly addressed, and expressed as fear or anger or grief, it tends over time to move and change, and the physical pain associated with it often diminishes or can disappear. I cited the example of soldiers in Korea and Vietnam who received large wounds and suffered relatively little pain because they knew they were going home, while others who suffered smaller wounds experienced great pain because they knew they were going back to face death on the battlefield again. The difference between the two was the difference in the meaning of the wound, and the meaning of the wound was what dictated the level of suffering. The wound of a life-threatening cancer can cause huge suffering, and if that suffering is not addressed, then unnecessarily high levels of pain medication may be used for a pain that is deeper–not lesser–than a purely physiological pain.
Spiritually, it is wise to remember that pain can be a great teacher. Most of us know that we have grown most during the painful times of our lives. On the other hand, too much pain can overwhelm the capacity to learn from it. Given that we cannot escape pain and suffering, which comes to all of us, the wisest course is to discover how we can learn from it: how we can accept it and make use of it. I do not say this lightly or easily, nor is it a teaching that any of us can always make use of. But it is something to remember, and strive toward, for those of us who resonate to this old idea.
Healing essentially involves choices in how one seeks to create the inner and outer conditions that maximize the possibilities of physical, mental, emotional, and spiritual well-being in the face of cancer. Healing can take place whether one is recovering physically or facing recurrence or even death. Healing, I believe, tends to optimize the chances for physical recovery and certainly transforms the quality of life.
The great value of healing, as Larry LeShan has put it, lies in using cancer as a turning point in one’s life. For most people cancer is an extremely unwanted and unhappy development. The pain should be deeply acknowledged. The question is whether the pain can also be used to open up a space in your life to reflect on who you are, what you truly want for the rest of your life, where you are going, what matters to you now, and how you can change your life in ways that make sense to you.
People who find a way to use cancer as a turning point often seem able to expand some of the best parts of their lives at the very moment that they are facing one of the worst crises of their lives. Therefore, their lives improve even in the face of the trauma of cancer.
This inner work of healing can be done by the patient himself; with a support group; with a psychotherapist; with a minister, rabbi, or spiritual counselor; with a network of supportive friends; within one’s family; at work; and in a thousand uniquely personal ways. It certainly expands life to seek this kind of healing and it may possibly extend life for some people by stimulating the immune function and other resilience factors. The search for healing can also transform one’s relationship with events that used to feel stressful, so that they feel less stressful. Stress, as we have seen, is known to enhance the growth of many cancers.
Fear of Recurrence
Living with the fear of recurrence is one of the most anxiety-provoking problems that a person who has had an initial successful treatment faces. The quarterly or annual checkups for recurrence can be terrifying, as can the question of whether or not a new health problem signals the return of cancer. One of the best ways to deal with this fear is through a support group or with a psychotherapist who works extensively with cancer patients. If this fear is talked over with other patients living with the same problem, it often diminishes. It is also a part of the process that leads one to a deeper appreciation of life, which can diminish the fear of death and therefore the fear of recurrence.
Facing a recurrence can be as difficult–or even more difficult–than facing the initial diagnosis, primarily because recurrent cancer is generally metastatic and mainstream medicine does not have many definitive curative treatments for metastatic cancer. For people who have been actively using complementary therapies or living a consciously healthy life since the initial diagnosis, the recurrence can be doubly devastating because they often feel their efforts were in vain. Recurrence renews the whole cycle of choices about physicians and therapies. It also plunges many people deeper into choices in complementary therapies. And it raises many of the issues of pain control and dying.
We all die. Whether or not we die of cancer, we all face the prospect of death someday. For most of human history, death has been a part of life. Contemporary Western cultures have marginalized and hidden the experience of death more successfully than any previous culture. The idea of death has become more toxic than it was in earlier times. Faced with the prospect of death, there is knowledge, choice, skill, and control about how, where, and when we will die. Here are some key points to think about:
Some people think they know death is “the end.” Others believe they know that life after death is certain. My belief is that death is a great mystery, a mystery worth contemplating.
Some people think they have to be “positive” all the time, and that allowing themselves to think about death will hasten their dying. My belief–and that of most experienced therapists I know–is that this is a profound misreading of what “fighting for life” is all about, and that thinking about death is for many (by no means all) a critical part of both fighting for life and preparing to face death. It is a critical part of the deeper healing process.
The antipodes that many people experience in facing death are the wish to fight intensively for life and the wish to achieve a peaceful acceptance of death. Neither of these attitudes is “better” or “worse” than the other. Many people switch back and forth between the two.
The fear of death is natural and common, although I have met many people–older people and people with cancer–who have lost all fear of death. Some people even look forward to death as a release or as a way to join a partner who has died before them. But fear, which is the most common human response, is amplified in our culture by the toxicity we have created around death. We can diminish the toxicity of the Western experience of death by doing what other cultures have naturally done: face death, think about it, learn about it, talk about it, and recognize the knowledge, choice, skill, and control that goes into the kind of death each of us would choose.
The kinds of choices we have include: whether to die in a hospital or at home, finding quality care, and considering hospice services, either at home or at one of the centers. We also need to ask whether we want to extend life at all costs or to allow a relatively painless natural process to take us out of life when the time comes, and whether to wait for death or meet it by taking our own lives, with or without the assistance of a physician. Each of these choices requires care and preparation.
There is a certain amount of negotiating room for most people about when they actually die. It is well documented that many people wait to die until after an especially meaningful holiday or wait for a child to arrive to be at the bedside or for a grandchild to be born. Less well documented experimentally, but often experienced by clinicians, are people who put off death for months or even years to see a child graduate from school or marry. In fact, we really never know when someone is going to die. I knew a woman who was expected to die without leaving the hospital, who unhooked herself from the intravenous (IV) lines, walked out of the hospital, and lived for several more years. Another friend described how, at one point in her illness, she knew she was breaths away from death, and chose to continue to breathe to see her daughter in a few days, and then recovered for a period of many months before dying. Death is much more “negotiable” than we sometimes think. To a surprising degree we may be able to choose when and where we die.
Those who have been at the edge of death often report that the actual process of dying can be, for some, surprisingly easy. I am not talking about the physical discomfort surrounding death, but the process of actually letting go into death. Many poets and writers throughout the ages have recorded this experience–often with their last words.
I have found that reading the great writers on the subject of death has deeply transformed my own relationship to it (see chapter 26, On Living and Dying). That, and meeting so many friends through the Commonweal Cancer Help Program who are facing death. I started the Cancer Help Program with a great fear of death, but the last 8 years of work with people who were facing death has deeply changed my relationship to it. I do not fear death nearly as much as I once did. And facing the fear of death has had a deeply positive effect on my own life. So I commend to you the possibility that reflecting on death may be of benefit to you as well.
In conclusion, I will try to answer a question I am often asked: What would I do if it were me?
I do not know the answer to that question. I do not think anyone can know that unless he actually faces the experience of cancer. But here are my thoughts:
I would be paying a great deal of attention to the inner healing process that I would hope that the diagnosis would trigger in me. I would be giving careful thought to what had meaning for me now–just what in my life I wanted to let go of and what I wanted to keep.
I would give careful thought to choosing a mainstream physician. I would be looking less for someone with wonderful empathic skills than for someone who had a reputation for basic kindness who would also be willing to take the time I needed to answer my questions. Above all, I would be looking for someone who really stayed on top of the technical aspects of my treatment and who recognized that I was the kind of patient who wanted to share in making the decisions. I would also look for someone who was willing to stick with me if I embarked on alternative therapies. If possible, I would want someone who had a good reputation for staying with his patients medically and emotionally if they were facing death.
I would use mainstream therapies that offered what seemed to me a real and meaningful chance for recovery, and I would use them with gratitude and work to augment their effectiveness. But I suspect that I would be somewhat unlikely to undertake experimental therapies or therapies with a very low probability of success that were very toxic and would compromise my capacity to live and die as I chose.
I would use complementary therapies. My first choices would include psychotherapy with a therapist experienced in work with people with cancer; a first-rate support group; and a healer with a good reputation. I would deepen and augment my regular nutritional program and I would strengthen my meditation and yoga practices. I would spend a lot of time in nature, walking in the woods, along the ocean, and in the mountains.
I would unquestionably use traditional Chinese medicine.
I would explore whether any of the high-tech alternative therapies appeared to have anything to offer me.
I would be deeply grateful for all the training I had received from friends in the Cancer Help Program in how to face cancer as best as one humanly can. I would recognize the months or years of active battle for recovery that lay ahead, followed either by living with the possibility of recurrence or facing recurrence and death as a fundamentally new part of my life. I would go for life, for recovery, with every possible tool and resource I could find. But I would also seek to face death with the same recognition of the challenge and the possibilities.
I would spend time with people I care a lot about, and with books, with writing, with music, with nature, and with God. I would do everything I could that I had not yet done and did not want to leave undone. I would not waste time with old obligations or conventions, although I would seek to extricate myself from them decently. I would be off into pure life, following its lead.
I can say none of these things with certainty. How can any of us know what he would actually do?
In cancer, there is no single right choice for all of us, but there are surely right choices for each of us. There are no certain courses of action, but there are certainly educated and wiser choices, as opposed to uneducated and more foolish ones. The skill is in the movement from ignorance toward knowledge and from knowledge toward wisdom. In wisdom, we choose what we are least likely to regret. Accepting the pain and sorrow inherent in the fate we have been given, we can seek also the beauty and the joy.
1 Ram Dass and Paul Gorman, How Can I Help? Stories and Reflections on Service (New York: Alfred A. Knopf, 1987).