A Fourteen-Year Journey:: Facing Leukemia with Macrobiotics

CONTENTS

Preface

Introduction –Mary Ellen’s Story – The Overview

Chapter 1 I Will Not Be Out of Control

Chapter 2 What is Macrobiotics?

Chapter 3 Some Elements of a Macrobiotic Practice

Chapter 4 The Roller Coaster Search for Direction: Who Can I Trust?

Chapter 5 The Irrefutable Medical Facts

Chapter 6 What I Witnessed - Macrobiotics and the Healing Power of the Body

Chapter 7 Western Medicine and Macrobiotics - Proof vs. Performance

Chapter 8 An Active and Energized Life-Performance and Quality of Life

Chapter 9 Too Little Time

Chapter 10 Five Lessons From the Journey

Appendix A Legend To Blood Count

Appendix B CBC Data For Fourteen Years

Appendix C Bar Chart Of White Blood Count Over Time

Appendix D Bibliography

Dedication

To Mary Ellen (1943 – 2006)

in memory of

your love, patience and courage

and

To Michael, Anne Therese and Peter

you were your mother’s greatest joy

PREFACE

This book is written for two quite different audiences. It seeks to reach out to both current and future cancer patients, especially leukemia patients, and to current and future Western medical practitioners.

These two audiences, the cancer patients and the medical practitioners, come from very different places, with very different emotions and expectations, and with very different educations and backgrounds. Yet, following the diagnosis of cancer, the two are linked, perhaps irrevocably linked, by the disease which brings them together. Both desperately want to win, both want to beat the disease, but their views regarding what the words beating the disease looks like in terms of patient longevity and, more importantly, the patient’s quality of life may well be quite different.

Right or wrong, cancer patients continue to look for alternative treatments which are less invasive, more benign, and less draconian than chemotherapy, radiation, and/or surgery. In their search these patients often look to Eastern alternative modalities. Right or wrong, medical practitioners in the United States tend to instinctively distrust alternative modalities, especially Eastern alternative modalities, because they are not seen as meeting the standards of modern science in today’s medical school curriculum.

Because of its unavoidable dual audience, this book from its inception seems two-headed. On the one hand, this book is written to offer everyday men and women given a diagnosis of cancer, especially a blood cancer like leukemia, evidence and the realization that if they are willing to accept the responsibilities of taking charge of their own health they can have a major voice in their choice of treatments and do not have to surrender their life, and the life and death decisions that are to follow, to the cult of expertise that so dominates Western medicine today. In doing so the book describes a highly particular and personal journey of one specific patient utilizing one specific alternative modality, Macrobiotics. This Macrobiotic approach is fundamentally Eastern.

On the other hand, this book is written to present evidence that urges the traditional practitioners of Western medicine, the men and women we rely upon today, to undertake clinical studies combining both Eastern and Western approaches to human health. Our Western studies of anatomy disclose a central nervous system that does not approximate and cannot accommodate or comprehend the Eastern view of meridians carrying energy throughout the human body. Despite that Western anatomical scientific fact, an alternative modality like acupuncture is more and more accepted within Western medicine. Utilizing those ancient Eastern meridians or channels for the flow of energy, acupuncture or acupressure is minimally invasive, has no apparent side effects, appears to work to relieve pain, assist with arthritis and other diseases and is now covered, even in the United States, by most medical insurance policies.

Could a collaboration between Eastern and Western modalities in some cancer cases, like leukemia, defer or ultimately eliminate the more invasive Western approaches without doing harm to the patient, thereby, providing cancer patients with both longevity and a better quality of life? As will appear in this book, I am not a scientist or a medical professional. I am an observer and later a chronicler of this journey. I do not claim to have a definitive answer to the central question posed about macrobiotics and cancer. But it is nonetheless a very important question for all of us.

Introduction –

Mary Ellen’s Story – The Overview

Grow old along with me,

the best is yet to be.

The last of life, for which

the first was made.

See all, nor be afraid.

These words are from a poem my wife-to-be gave me while we were dating back in college. Over the course of the 45 years that followed, I learned that one life lived fully and well is an amazing and beautiful thing. I was privileged to witness such a life— a thoughtful life of hope and joy, of courage and goodwill, lived for fourteen years in the face of the specter of cancer. This is the overview of Mary Ellen’s story as I witnessed it.

Mary Ellen and I lived only three blocks apart in the same Chicago suburb and went to the same grammar school. I was only one year ahead of her in school but never really knew her or spoke to her in grammar school or high school. In 1960 I went off to the University; and a year later, after her high school graduation, we went on our first date. It was July 1961; we saw a summer theater production of the play Bell, Book and Candle. I think I was in love with her from that night.

We dated through college, married in graduate school. We moved to Philadelphia for my first job in 1968, adopted three children, bought a modest three-bedroom house with a yard, and got a dog. We had good days and bad days; we had good times; we had bad times. We struggled, we laughed, we celebrated. We were normal.

Then, without warning, in 1992, our family doctor informed Mary Ellen she had leukemia (chronic lymphocytic leukemia or CLL). CLL is the most common form of leukemia in the United States but generally strikes people in their 60’s and above. Mary Ellen was just 48.

When you have CLL, the defective white cells (lymphocytes) increase and multiply. The path of the disease is progressive with an ever increasing number of defective white blood cells driving out the healthy white cells, including the T-cells needed to fight infections. Ultimately, the defective white cells overwhelm the red blood cells.

The multiplying defective white cells will begin to accumulate in the lymph nodes, in the spleen, and finally overwhelm the bone marrow in the spine. Treatment includes chemotherapy and radiation to eliminate the defective white cells, and surgery, removal of the spleen, splenectomy. Despite some thus far successful chemotherapy trials in the past five years, doctors will tell you there is no known cure for CLL. The web site for the Leukemia & Lymphoma Society will tell you the same thing.

What follows is the story of my wife’s amazing 14 year journey with CLL. I feel obligated to write it both as a tribute to her spirit and love of life, her tenacity and courage, and because she would want others, also stunned by a diagnosis of cancer, to know they have choices to make on their own very personal journeys.

Beginning with that first numbing announcement, you have leukemia in July of 1992, approximately every 3 months Mary Ellen went to have her blood drawn and analyzed (a complete blood count — CBC). Blood contains three types of cells suspended in a fluid (plasma), white blood cells (WBC), red blood cells (RBC) and platelets (PLT). Thus every 3 months, white blood counts, red blood counts, hemoglobin, hematocrit, platelets, lymphocytes, basophils, neutrophils, were all counted, studied, tracked and compared. A Legend to the CBC results and a complete copy of all CBC data over fourteen years can be found in Appendices A and B.

Following, each blood count, we made an appointment with Mary Ellen’s hematologist/oncologist (blood cancer doctor), initially at Temple University Hospital and later at the Hospital of the University of Pennsylvania. While we were fortunate to have the top doctors and the great resources of the teaching hospitals of Philadelphia available to us, she dreaded those appointments.

A normal white blood cell count is approximately 4.5 to 11.0 thousand white blood cells per liter of blood. When Mary Ellen was first diagnosed on July 22, 1992 her white blood count was already at 12,800 and in little more than a year it reached 22,200, more than double the acceptable high white blood count.

The hematology-oncology textbooks in the first half of the 1990s recommended treatment (chemotherapy) when the white blood cell count reached 50,000 and mandated treatment when the white blood count reached 75,000 to 100,000.

From the very first day Mary Ellen searched for an alternative way to control her leukemia. She bluntly, but politely, informed her doctors they would never treat her with chemotherapy. They never did. Five years into her leukemia Mary Ellen’s white blood count hit 100,000. Yet her spleen was not swollen and her lymph nodes were not enlarged. Seven years into her leukemia her white blood cell count surpassed 200,000 (217,000) and in May of 2000 eight years into her leukemia her white blood count hit its peak at 251,000, more than twenty-one times higher than an acceptable white blood count.

Mary Ellen received no radiation, no chemotherapy, no bone marrow transplant; she had no surgery on her spleen or her lymph nodes. She turned to Macrobiotics and other supportive Eastern alternative modalities. Her white blood count reached in excess of 250,000 yet she felt energetic, looked beautiful and slowly but surely brought her disease back under control.

With discipline and dedication, she gained control of her leukemia solely by exercise, body work, and a Macrobiotic diet. The only medical intervention she allowed were occasional vitamin B-12 shots to supplement her diet and one time in 2004 a red-blood cell transfusion to address anemia. For everything else she relied upon her Macrobiotic diet and practice.

The standard macrobiotic diet arose in Japan and appears to have played a significant role in the recovery of many ordinary citizens from radiation poisoning after the bombing of Hiroshima and Nagasaki. In the post World War II United States, two Japanese practitioners Michio Kushi, on the East coast, and Herman Aihara, on the West coast, popularized the macrobiotic diet and its accompanying life style.

The standard macrobiotic diet emphasizes whole grains, especially brown rice, barley and millet,