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Members of Stepping Stones Use Complementary Medicines

Inside this Issue... Members of Stepping Stones Use Complementary Therapies A Message from the Co-Facilitators News You Can Use Your Regional Link to the Survivorship Movement Chun-Your LinkHan Zhu: Portrait of a Chinese Doctor Meet Jane Kenney Review: Choices in Healing

This past year, twenty-one members of Stepping Stones responded to an informal survey about complimentary medicines. The idea for the survey was developed during a monthly meeting in which members expressed a desire to compile a tangible list of resources that might be of help to other bone marrow transplant survivors and their family members.

The following are the results of the survey:

• 8 members of the group regularly use acupuncture for prolonged periods since transplant. Although one member specifically mentioned disliking the sensation of needles going into his skin, most others indicate that they feel energized after acupuncture.
• 6 members visit a Chinese practitioner and take Chinese herbs in the form of a brewed tea. These members feel that the tea helps bolster their immune systems in intangible ways. One member believes that the tea is responsible for helping his platelets to recover after relapse and additional chemo treatments. Since taking the tea, he has not needed blood or platelet transfusions.
• 12 members mentioned physical exercise as a key component in the recovery process. A wide variety of exercises were mentioned, ranging from walking, to yoga and chi-gong, programmed workouts at the gym, and regular participation in specific sports. Exercise is viewed as a means of alleviating post transplant stress and fatigue, and of building strength and endurance.
• 6 members take between one and five herbs on a regular basis. 2 members take between six and ten herbs regularly.
• 14 members take vitamins on a daily basis. The majority take between one and five pills daily. However, there are members who take more than six pills a day. One member takes over 16 pills a day.
• 2 members take mineral supplements.
• 7 members noted that they use healing methods which did not fit into the major categories of this survey. These include: osteopathic, anthroposophical, and ayurvedic medical treatments; humor, music and art therapy; and massage.
• 9 members have attended at least one mind/body seminar and all believe that such seminars are extremely helpful during the recovery processes.
• 5 members specifically mentioned positive thinking as a formalized technique which has helped them achieve their successful treatment outcomes, and which they still use in their lives after transplant.
• 6 members wrote at length about the power of prayer as an adjunct to therapy.
• 7 members mentioned the ongoing importance of psychotherapy as an aid to recovery.
• 5 members firmly believe that nutritional therapy is important to maintaining their physical health after transplant. All five follow special diets.
• 20 members believe that support groups are crucial to their post transplant health both physically and mentally.
• 12 members use visualization and relaxation techniques on a regular basis.
• 7 members wrote at length about the positive effect of volunteer work within the cancer community on their own physical and mental health.

Why do the members of Stepping Stones, together with a growing number of cancer survivors across the country, embrace alternative therapies as complementary care? According to the participants in the survey, empowerment is the number one reason. "Since my transplant," wrote one member, "I like to feel that I am actively doing something to strengthen my immune system. When I was first diagnosed with cancer, I had a mental image of a group of wild, unruly, uncontrollable cells which were reeking havoc on my body. Today, after my transplant, and through the use of various complimentary therapies, I feel like I have regained control."

"Feeling strong and in control is what my survival is all about," wrote another member who is on a constant search for various methods to bolster her immune system. "I'm always reading to learn....I listen to tapes on healing whenever possible. And I love sharing information on what other BMT survivors do at Stepping Stones' meetings. Stepping Stones is terrific for my immune system!"

In response to the survey question about which methods have been most helpful in the healing process, one member wrote "All were useful as elements in my 'kit'. Meditation and visualization were most helpful in coping with the procedures and discomfort. Therapy has been most helpful in long term management of stress, fear and PTSD. Nutrition and exercise continue to be important as immune boosters."

And many who responded to the survey expressed thoughts similar to this particular survivor who wrote, "I just can't single any one (method) out. It seems that each method was supportive for a specific need at a specific time. For example, prayer feeds and heals my soul, therapy my mind, herbs and acupuncture my chemical body....And each of these supports the other...."

If you would like a copy of the resources mentioned by the Stepping Stones' members who took this survey, or a copy of the survey itself, please write this newsletter. Include a self addressed, stamped envelope.

As we celebrate Stepping Stones' Seventh Anniversary, I have to pause and think about how interesting and appropriate it is that we tend to measure cycles of growth in seven year terms....

Here at the Dana-Farber, we are entering a new and exciting growth cycle. We are beginning a period where we are formally acknowledging the use of complementary therapies by our patients and survivors. Officially, there is now a functioning committee made up of staff doctors, nurses, social workers and survivors dedicated to the study of this use of non-traditional therapies. As a result, discussions will be ongoing about which complimentary approaches are most effective and might be offered on-sight as an adjunct to the cutting-edge conventional therapies and trials available to our patients and survivors at the Institute. And thanks to Stepping Stones' member, Lenny Zakim, there are also concrete plans for a video which will introduce this subject to newly diagnosed patients for empowerment purposes.

Seven years ago, when we began our monthly Stepping Stones' meetings, I did not envision that all of these exciting things would be in the works. Although I've always believed in the mind-body connection, I never imagined it would be officially recognized by the Institute's scientific and medical community in such an important way. And I have no doubt that this recognition would not have occurred without the persistent efforts of Stepping Stones' members. What a fantastic accomplishment!

Today, I pause and wonder.... We are at the beginning of a new seven year adventure. What exciting discoveries and changes will the next seven years bring to both the Dana-Farber and Stepping Stones?

Happy Seventh Anniversary to us all! -- Mary McCauley

Stepping Stones is free of charge and meets on the first Wednesday of every month at the DFCI from 7:00 PM to 8:30 PM. For information call the Department of Social Work at 617-632-3301.

In this complicated age of hospital mergers and managed care, you and your family have an important locally accessible ally. In October of 1997, the New England Coalition for Cancer Survivorship (NECCS) will celebrate its second anniversary. This regional chapter is an associate member of the National Coalition for Cancer Survivorship. Both the parent coalition, founded in 1986, and this relatively new local chapter, are grass roots organizations of, for, and by cancer survivors. Their goal, according to NECCS president, Alice Dawn, is "to address common issues which affect quality of life and fair treatment of all cancer survivors". For example, when regional and national members participated in a national survey of cancer survivorship issues, the result was the establishment of the Office of Cancer Survivorship within the National Cancer Institute.

NECCS is your regional link to the national survivorship movement. When you become a member of NECCS, you will receive the national and regional news letters. You will also be invited to attend a variety of interesting programs about health insurance, employment, advocacy, doctor/patient relationships, the long term effects of treatment, and psychosocial issues. And most importantly, your membership will help impact legislation and education that will enhance the quality of life all cancer survivors.

Stepping Stones' members Margie Rath and co-founder Phyllis Truesdell are on the board of directors of the NECCS. If you would like to empower yourself and other cancer survivors politically and otherwise; then become a member of this important new organization. Write the New England Coalition for Cancer Survivorship, 18 Allenwood Street, West Roxbury, MA 02132-2048, or call Alice Dawn at 617-325-1757 for further information.

It is a long journey from Beijing, China to Newton, Massachusetts. In 1981, Chun-Han Zhu made the first phase of this journey alone, before his wife, Marie, and his young daughter, Cynthia could follow. He had been offered a fellowship in neurophysiology and neuropharmacology by Harvard Medical School. On October 21 of that year, in a laboratory at Boston Children's Hospital, Dr. Zhu began three years of research centering on the study of a specific neuropeptide present in the brain cells of patients with Alzheimer's disease.

Today, from the office of his comfortable Newton home, he reminisces about his first few years in the United States. Zhu sits behind his desk as he remembers. Overhead, an enormous but delicate fern which hangs from the ceiling. "It is a common house plant," he says with a smile, "An asparagus fern. A gift from a patient....". He speaks slowly and deliberately, with a sincerity and openness that makes it easy to imagine how difficult the cultural and professional journey must have been for him and for his family. In Beijing, Zhu was a licensed Western and Chinese medical doctor. He was in charge of a local hospital ward where he practiced both forms of medicine conjointly. In addition to his formal education in the two medical disciplines, he also spent much time studying traditional Chinese medicine with his father, Dr. Mei Zhu, a senior doctor of the ancient art. As Zhu writes in the dedication of his book, The Clinical Handbook of Chinese Prepared Medicines, "my father has been my driving force."

In China, where the wisdom of ages is revered, the practice of traditional medicine is thousands of years old. "Recently," Dr. Zhu explains, "written documents have been discovered which date back over two thousand years and which describe herbs and methods of practice still being used by Chinese doctors today." According to Zhu, Americans tend to think of Chinese medicine simplistically, as the art of acupuncture alone. "This is because when Western travelers visited China during the cultural revolution, they heard about and actually witnessed the use of acupuncture during operations. It seemed like some kind of miracle that Chinese surgeons could make incisions without using anesthesia.... So acupuncture became the focus of much attention in the United States and Europe. Acupuncture points were given numbers which corresponded with their Chinese names so that they could be more easily studied by Westerners. And people came to mistakenly believed that acupuncture alone was at the heart of traditional Chinese medicine." In reality, however, that continues to be a huge misconception. The ancient medicine depends upon much more than a knowledge of the points of acupuncture. Herbal medicine, accupressure and Qi Gong are equally important treatment approaches in the practice of Chinese medicine.

Shortly after his arrival in the United States, Zhu was invited to teach a few courses in herbal medicine on a part time basis at the New England School of Acupuncture. In the early 80's, the school was new, very small, and without any regulations. "It wasn't until 1988 that the state began to license acupuncturists," Zhu recalls. "Before that time there was no such thing. Now there is a licensing board, a committee, and practitioners must get a standard education. In fact, every two years acupuncturists must renew their licenses. They must finish thirty hours of continuing education. Everybody, including myself must do this. It is the law." But in the early eighties, the environment, as far as Chinese medicine was concerned, was quite different. And it was under these circumstances that Zhu began to teach his courses in herbal medicine to an increasingly receptive audience. His students were fascinated, and little by little, they began to ask him to treat a wide variety of health problems with traditional Chinese medicine.

By 1984, Zhu sensed that he was at a crossroads in his professional life. He could continue his work in his lab at Children's Hospital, or he could begin the full time practice of Chinese medicine here in the United States. The time to make such a drastic career change seemed right and Zhu decided to seize the opportunity. "The way I saw it at the time," he says thoughtfully, "was that Western medicine, especially in the Boston area, was at the top level. There were so many fine hospitals here. There was Harvard Medical School. An individual could get excellent care from Western medicine. But as far as Chinese medicine was concerned, much was missing. I believed then, and still believe now, that Chinese medicine, especially if it is combined with Western medicine, can give people a maximum benefit beyond the use of either medicine alone.... I knew that people were ignorant of this fact and that we needed to let people know this. They deserved the very best that both medicines could offer. So I began my practice and I also continued to teach herbal medicine."

In fact, Zhu believes that his teaching, which he still does periodically, is just as important as his practice of Chinese medicine. He strongly feels that people need more education, especially in the vital area of herbal medicine. "Here in the United States," he observes, "the manufacturers of herbs try to give people the feeling that these natural medicines are a harmless sort of food supplement. It is easy for them to put their products on the market without FDA intervention. Herbs are falsely advertised and their improper use can lead to serious side effects and problems." Zhu cites the case of Ma Huang, which is commonly available in the United States, and is improperly advertised as an herb which will boost energy, clear the respiratory system, suppress the craving for nicotine, and even keep people in good mental health. In actuality, an experienced Chinese herbalist knows that Ma Huang's effects on the cardiovascular system can be similar to epinephrine in many respects. If prescribed incorrectly, it could cause heart problems and have serious side effects. "This is why," Dr. Zhu says, "in China, herbs are strictly regulated. You must have a prescription for herbal medicine, and you must take it to a herbal pharmacy where is prepared for you...." Zhu believes that this sort of regulation is also necessary in the United States.

Over the years, Chun-Han Zhu's practice has grown tremendously. Word has gotten out about the effectiveness of Chinese medicine, especially within the cancer community. Although he treats a wide variety of people with all kinds of problems, approximately forty percent of his patients have had a cancer diagnosis. He welcomes patients who refuse Western medical treatments for cancer because he believes that any treatment is better than none as far as this disease is concerned. However, it is his considered opinion that no Chinese medicines can be as effective against active cancer cells as conventional Western treatments. "Surgery, chemo and radiation are the strongest therapies a cancer patient can get," he says adamantly. "Nothing in Chinese medicine can compare with them. When patients receive this kind of treatment, they already get enough care for the cancer cells....Unfortunately, the chemo and radiation may also effect the normal cells and cause side effects like canker sores, diarrhea, anemia and bone marrow suppression." It is at this time that Zhu believes Chinese medicine can do its best work. "It can be supportive of the patient during and after treatment. It will help a patient get stronger so that he or she can go through the Western therapies without too much damage or too many side effects." Based on his own clinical experiences, Zhu has seen that many of his cancer patients are able to actually increase their appetites, blood counts and energy levels, during standard therapy while on Chinese medicine.

Specifically, when Dr. Zhu is treating cancer patients, he uses acupuncture, and even more importantly, herbal medicine to boost their immune systems. After bone marrow transplant, he listens carefully to their physical complaints and treats each according to his or her unique needs. "Post transplant patients have something in common with each other. They have all had intensive chemo and/or radiation; so the herbal base that we use for them is the same. However, it is what goes on top of the base that differs for each patient depending on the nature of the individual's complaints. The herbs that we add for a patient with low energy, for example, are different from those added to the herbal base of a patient with a bone marrow problem, or a sleeping disorder....." Each herb that Dr. Zhu uses in his practice is dried and has been imported from a particular region of China. Patients leave his office with a special blend of herbs which are brewed into a tea and are taken four liquid ounces at a time, twice daily. If a patient cannot tolerate the taste of the tea, Zhu suggests mixing it with four ounces of a favorite juice to help mask the taste.

When Chun-Han Zhu speaks of his work with cancer patients and survivors, it is clear that he understands the difficulties implicit in their lives. "Cancer patients hear about so many types of treatments," he remarks. "They try so many different things that they get overloaded. It can be overwhelming and stressful. And some of the treatments are fraudulent." Zhu shakes his head sadly as he relates the story of a patient who decided to go to Mexico for treatment. "She called me and asked for my advice. A friend of hers worked in the clinic there and she was considering the treatment. The therapy she finally decided upon raised the body temperature to almost 108 degrees. The theory was that the heat would kill the cancer cells. But what about the body's healthy cells? Obviously, they cannot take that temperature!....Also, at this place in Mexico they gave my patient some sort of coffee enema and put her on a very, very strict diet...only carrot juice. When she came back she was anemic and she had to be hospitalized....It is so difficult for cancer patients.... You must use your own judgment, decide if the treatment makes sense to you. Be discriminating...."

In his heart, despite the reticence of some Western scientists and physicians, Zhu knows that traditional Chinese medicine can be of tremendous help to cancer patients. It is not quackery; but rather, it is one of the sensible choices that cancer patients and survivors can make. It has the wisdom of the ages behind it. As Michael Lerner, the founder of Commonweal notes, "It is one of the most intriguing of the adjunctive therapies for cancer. There is considerable evidence for its benefits in pain control and in alleviating the side effects of chemotherapy and radiation therapy....There are also some reasons to believe that traditional Chinese medicine may help in the battle to extend life with cancer and to lower the risk of recurrence...". Chun-Han Zhu agrees. He has seen the concrete evidence of it in his daily practice and he looks forward to the time when there will be many clinical trials to concretely measure its effectiveness in the battle against cancer.

Jane and husband, Jim

When Jane Kenney first learned she had cancer, she was convinced that she had to die. Because of her medical knowledge and her experiences as a nurse, she perceived her diagnosis as a death sentence. Since those difficult days well over ten years ago, she has grown a great deal. Cancer, for Jane and her family, has become both a challenge and an opportunity. As a direct result of her illness and her many treatments, she is a stronger, more spiritual person. Her intelligence and her sensitive, loving nature make her a skilled cancer educator. Most especially, Jane feels a sense of mission when she is invited to speak with senior nursing students. Hers is the unique perspective of a cancer survivor who also happens to be a nurse. She knows from first hand experience that cancer is a chronic disease which effects not only the patient, but also the patient's extended family. And as a mother, she has always been sensitive to its long term effects on the lives of children.

Jane's story began in November of 1986 when she discovered a lump. For several months prior to her discovery she hadn't been feeling right. She knew she was unnaturally tired when she was jogging with friends and began to notice that she didn't have her usual endurance or stamina. Then, one day while she was idly scratching herself, she felt the lump. "Although I'm a nurse," she says, "I wasn't doing any type of self exam; but I immediately knew it wasn't good.... The lump was on my left side, near my breast and sort of under my arm. Because of the location I couldn't tell specifically what it was connected to. All I knew was that it was something I couldn't ignore."

At the time, Jane was living in Germany with her three children, and her husband Jim, who was working for the federal government. Although she immediately went to see a German doctor, her comfort level dictated that she return to the States for her biopsy and tests. So while Jim and her two boys, Shawn and Jamie, stayed in Europe; Jane and her thirteen year old daughter Beth flew home to Boston. After several traumatic days, her pathology reports came back non-hodgkins lymphoma and her entire family's world turned upside down.

In January of 1987, Jane began the staging process that would lead to her bone marrow transplant over three years later. Fortunately, because her lymphoma was very slow growing, she found herself in the "just wait" situation which is very common for this form of cancer. "The immediate course of treatment," Jane explains, "was no treatment at all."

During this phase, it was Jane's husband who was doing the medical research. Jim would put all kinds of information on lymphoma in front of his wife, but she'd refuse to even look at it. She was in total denial about her diagnosis until a friend who was going through chemotherapy for breast cancer confronted her. Jane recalls the question Peggy posed to her as if it were yesterday. "How are you going to win this game you've been forced into playing with cancer unless you get your act together and face this?", her friend asked.

"With my cancer diagnosis," Jane wisely observes, "I'd fallen apart physically, mentally, emotionally and spiritually. I'd thrown my hands up in the air. It was Peggy who forced me to see the light. She challenged me to educate myself, to be in control. 'Don't let the disease be in control of you!', she warned.... I'll never forget her, or her advice, because she helped give me back myself....

Jane and her family learned another important lesson when they sold their house in Reading and moved to Townsend where they live today. At first, nobody in their small community knew about her disease. "We decided that we wouldn't tell anyone I had cancer," she says. She shakes her head in disbelief as she remembers yet another challenging period in her life. "I applied for a part time job in the local school sytem and didn't tell them. And we never mentioned anything to our new neighbors. We truly believed we could pretend and nobody would find us out."

This course of action lasted about five or six months until one day when Jane was standing in the kitchen talking to her husband. She recalls her moment of epiphany quite vividly. "'This is wrong, Jim,' I remember saying, 'This is definitely wrong! Cancer is our life right now. It's a part of our life and we're denying it. If people can't accept us as the Kenneys, and by the way, Jane has cancer; then that's their problem. I can't keep hiding this any more!'...A direct result of this cover-up was that I was placing myself and my family under a tremendous amount of stress. We were living a lie. I couldn't be who I was. I was now Jane with cancer and this elaborate facade was probably just another way of denying the truth and the reality of my situation."

So, ever since that day in her kitchen all those years ago, Jane and her family have been boldly out of the closet as far as her cancer is concerned. "It was a moment of real growth for me," Jane says thoughtfully. "It made me realize the truth of my situation which is still my truth today. I am Jane Kenney and I have cancer. No matter whether the cancer is active or inactive, it's part of my life forever. I have to face that!"

Today, Jane speaks proudly of the t-shirts her family wore as she was going into transplant. They were imprinted with the words "NO GUTS, NO GLORY" which has long since become the Kenney family motto. Since her transplant on May 25 of 1990, she and her family have been through some very rough times. She's had to cope with many physical and emotional difficulties which have included a vicious case of shingles, a relapse, and attending her daughter Beth's high school graduation on a morphine drip. "But," Jane says with her characteristically gentle smile, "I was there to see my daughter deliver her speech as the President of her graduating class. I was there!" ....And these days, without any traditional therapy, she has had a spontaneous remission and is in excellent health. Jane is a firm believer in the mind-body connection, and in the use of complimentary therapies such as Chinese medicine, herbs, vitamins, prayer, psychotherapy, Reiki healing (she is studying to become an instructor); and of course, Stepping Stones. Jane and Jim were both at the group's first meeting seven October's ago. Additionally, she and her family continue to receive excellent care and support from her transplant physician, Dr. Arnie Freedman.... This past Spring, Jane could be seen dancing with her son Jamie at his wedding. As Jim Kenney takes pleasure in noting, "At that incredible sight, there wasn't a dry eye in the house!"....Above all else, Jane would like to make a difference in the attitudes of health care professionals and managed care toward cancer patients, and in the attitudes of cancer patients toward themselves. Telling her courageous story is one way she hope to accomplish this. In Jane's view, there is indeed a full life after transplant!

Choices in Healing : Integrating the Best of Conventional and Complementary Approaches to Cancer, can be purchased online for $14.80 from Amazon Books. Click on the book cover to go directly there.

For cancer patients and survivors alike, Michael Lerner's Choices in Healing, is a truly remarkable roadmap to the new frontier of holistic cancer therapy. First published in hard cover in 1994, and currently available in an affordable paperback edition, this book is a scholarly, detailed, and eminently readable study of the best of both conventional and complementary approaches to cancer treatment. It also deals with the psycho-social aspects of the disease and with various methods of bolstering both the immune system and the psyche of survivors in their lives after active cancer treatment.

If you have ever been confused over the myriad of complementary methods you might consider using to strengthen your immune system after transplant, then Choices in Healing is definitely the book for you. Not only does Lerner discuss conventional therapies and cultural approaches to cancer; but he also writes in depth about spiritual, psychological, and nutritional therapies which are both mainstream and unconventional. His overview of traditional Chinese Medicine is particularly excellent. Scholarly and concise, it provides detailed and accessible information about acupuncture, herbs, Qi Gong, and specific clinical trials involving these techniques.

Choices in Healing also contains an excellent appendix with concrete information sources for both mainstream and complementary therapies. Through the use of Lerner's carefully researched list you can learn about advocacy groups, support organizations, private consultants, public services, clinics, etc. Names, addresses and telephone numbers are provided.

When you are considering a full spectrum approach to bolstering your immune system, make sure you have easy access to Choices in Healing. As Dr. Joel Elkes, of John Hopkins University has said, "In years to come, Michael Lerner's book will stand as a landmark of what is best in comprehensive medicine. The science is thorough, and the humanism is deep."