'While there's hope, there's life.'
– JOEL NATHAN
When I was a child I used to have a recurrent nightmare. I was being chased by a lion. No matter how hard I tried to run, my legs wouldn't move. I felt trapped.
Nothing recaptured that caught feeling more vividly than my doctor saying, 'It's cancer', 43 years later.
At once all the desperate terror of my childhood nightmare returned: 'This feels like a bad dream. It can't be happening to me. I'll wake up soon and it'll be over.' But I knew this was not a dream. I could feel the blood drain from my face, my stomach contract; everything went quiet.
When I unfroze, I thrashed around, looking for a way out of this nightmare. At the time, there was no treatment to cure my rare form of leukemia. I searched everywhere for a way out, but every direction I took led me back to the same bad dream. The full story of my battle to survive the prognosis that I had less than three months to live is told in my first book, Time of my Life (Penguin Books, 1994).
When I had recovered, I decided to write the kind of book I wished had been available to me when I was first diagnosed with cancer—a guide that would tell me all the things I had to find out the hard way, the things doctors never mentioned, the things it was nobody's responsibility to tell me about.
- How do you go about getting a second opinion?
- How do you break bad news to your family and friends—and especially your children?
- How do you choose the right doctor for you?
- How do you find the right treatment for your particular type of cancer? and for your particular needs?
- How do you build confidence to make your own choices?
- How can you and your family best handle the practical and psychological stresses of your changed life?
- How do you maintain optimism and hold despair at bay?
- How do you find a meaning to life while facing your own death?
- How can you conquer your fear of dying?
I wanted to offer others a book that would take the fear out of cancer, and maximize the chances of survival by providing practical advice for meeting the medical and emotional demands of a life-threatening illness in the best way possible. In doing so, I have drawn not only on my own experience but that of countless others.
I completed the draft of this book five days after undergoing surgery for lung cancer. I was determined to survive cancer again.
In the twelve years between my two different cancers and through two recurrences of my leukemia, I have counseled people with various life-threatening illnesses. I have addressed support groups and gatherings of doctors and nurses. I have researched every aspect of cancer—its causes, cures, physical and social effects, emotional, and spiritual impact. Using my own databases, the Internet and the advice of consulting doctors, I started a company to help people find out more about their illnesses and treatments. As I completed this book, and apart from counseling cancer patients, I was working as a trainer in the palliative care unit of university and as a consultant to a cancer association to develop and promote cancer support, health and death education, and survival skills.
This book grew out of my experiences in survival. It is essentially about how your own resourcefulness and spirit can enhance your survival—for however long. When you are despairing, it is often the stories of others suffering the same experience that can inspire, guide and comfort you. But first let me retell my story, as it reveals the context for much I have learned about surviving cancer.
It began in the summer of 1982 with a pain in my right shoulder. At first I ascribed it to my strenuous exercise schedule. I managed to ignore the pain for a few weeks, but when it became unbearable, I went to see my general practitioner. He thought I had strained a muscle, so he sent me to a physiotherapist. After weeks of deep massage, manipulation, ultrasound and cortisone injections, he referred me to an orthopedic surgeon. He, in turn, could make no clear diagnosis.
I was now convinced that my increasing tiredness was simply due to the relentless pain, so I visited an acupuncturist. After several weeks, with my distress still unrelieved, my GP's partner was less concerned about my painful shoulder than my paleness. Mumbling 'possibly anemia' under his breath, he sent me to a hematologist, a specialist in blood disorders. In an attempt to find out why I was now having night sweats and why my blood counts kept falling, he sent me for a blood test once a week for the next eight months. Meanwhile, I tried to bury myself in work.
I didn't realize it at the time, but working longer hours provided me with an explanation for my growing tiredness, while my giving up all sports gave me an excuse for my expanding midriff. Out of fear of what they might say, I didn't challenge my doctors' opinion, nor did I consider asking for a second one.
Eventually, the specialist suggested I have a bone marrow biopsy. The result was inconclusive. In the end, I endured no less than sixteen of these agonizing procedures. CAT (Computer Aided Tomography) scans and more blood tests followed. Still no one could diagnose my problem. The night sweats had become worse. I changed my pajamas and the bedclothes several times a night. When these ran out, I slept on towels.
The months dragged on. Small lumps started to develop in my groin and my armpits. When I came out in boils, I was tested for fevers found in countries I had never visited.
In late 1983 I underwent a second bone-marrow biopsy. Two days later, my doctor called me in and said, 'At last! We have a name for it. It's an extremely rare form of cancer called hairy cell leukemia.'
'Is it benign?' I asked.
'No,' he said. 'It's malignant.'
The pit of doom engulfed me.
'How long do I have?' I asked, outwardly composed.
'I can't say,' he said. 'But if we remove your spleen, we could buy you a little time.'
My second question was, 'Will the operation save my life?'
'There is no cure,' he replied. 'But I have made arrangements with a top surgeon to remove your spleen. You should be home before Christmas.'
The moment he told me he had made arrangements for surgery without consulting me, all my survival instincts were aroused. I decided to get a second opinion.
I couldn't get an appointment with an oncologist, a cancer specialist, for two weeks. My acupuncturist opened the door to an endless line of people offering a range of alternative treatments. By the time I went for a second opinion from the oncologist, I'd discovered meditation, changed my diet, attended church and lined up appointments with several healers.
The oncologist confirmed the initial diagnosis. As for the pain in my shoulder, he was surprised that no one had told me it was a referred pain from my spleen! Two days later, I called my doctor and told him to cancel the operation. He was not impressed, and told me so.
'I went to a lot of trouble to set it up,' he said. And he meant it.
By now, my night sweats had become more severe, my tiredness a constant drain. I began to experience severe headaches. The lumps in my groin were swollen and most uncomfortable. My spleen was growing larger and more painful day by the day.
I became convinced that alternative medicine offered more hope. For more than a year I followed the regimens of some well-known alternative therapists—Gerson, Isserls, Kelly, Breuss and Wigmore—and some obscure ones. I was treated by spiritual healers, numerologists, a hypnotherapist, a clairvoyant, a world-famous psychic surgeon from the Philippines and a homeopath from India. I tried Chinese medicine—including acupuncture, poultices, herbs and heated suction cups on my back. I tried homeopathy, macrobiotics, naturopathy and visualization. I consumed vast amounts of vitamins, especially vitamin C; at one stage, I was taking 40 g a day. I bought a non-centrifugal juice extractor and drank thirteen juices a day made from vegetables, wheat grass, raw liver and carrots.
The paraphernalia of alternative medicine had me mesmerized. Nothing was too far-fetched to try. I twirled crystals over my food to determine if they were right for me, and placed a broom under my bed to align me with the earth's magnetic forces. I ate organically grown vegetables, avoided cooking in aluminum pots. I tested for food allergies. I tried various fasts, exotic herbs, took colonic irrigations and coffee enemas.
I believed that my optimism could keep me afloat, that my determination would steer me through these troubled waters. I meditated for several hours daily, joined a cancer support group, and read extensively. Staying alive was exhausting—and very expensive. I had stopped working to devote myself fully to my recovery. It was not an easy decision; in the end, it broke my marriage.
Despite all my efforts and my conviction that I was on the right course, the evidence pointed the other way. My blood counts continued to fall. The night sweats continued, and my spleen grew larger. I was able to walk only two or three paces before stopping to catch my breath and allow my heart to stop pounding. My gums—and later, my nose—began to bleed spontaneously; I would wake to find my pillow soaked in blood. My headaches became more severe. My expanding spleen hurt more and more, jamming up against my stomach so I could not eat a full meal. Eventually, I subsisted by sipping juices and snacking. I had also turned bright yellow from carrot juice.
This presented many unforeseen problems. I had reluctantly agreed with my wife's decision not to tell our children about my illness. In order to ensure there would be no breach in this wall of denial, we kept the news from friends and workmates alike for almost a year. Everyone thought I had jaundice and could not understand why I was taking so long to recover. The most serious consequence of this decision was the effect on my sons. It has taken me a long time to heal the wounds of lost trust. I learnt how unwise it is to protect your loved ones from reality.
A year after my diagnosis, I suffered a retinal hemorrhage. Later that day, I received my first platelet transfusion. Despite determined optimism, my life now became dependent on full blood transfusions every week, and platelet transfusions whenever my gum and nosebleeds could not be stanched. At the same time, stories about a new and deadly virus, AIDS, began to appear in the newspapers. Contaminated blood was implicated in many of the new cases. Each transfusion became a game of Russian roulette.
Each bone marrow biopsy revealed an increase in the number of hairy cells. Platelet transfusions were becoming less effective. The consensus of medical opinion was that I was likely to die within three months—most probably from a brain hemorrhage or severe infection.
A near-death experience, complete with a tunnel of light and clouds of love, helped me cope with my fear of death. I was now living by the day, finding peace in meditation, solace in the ageless insights of spiritual teachings.
But the reality of my situation was that my spleen was now 28 cm long—a normal spleen cannot be felt. My haemoglobin was 4.5—normal is 13.5–18.0. My white cell count was 0.6—normal is 4.0–11.0. My platelet count was
9 000—normal is 150 000–400 000. I was running on water. I could do nothing now except pray for a miracle.
It appeared a week later in Time magazine. In the 1 July 1985 issue, I came across an article about a new drug—interferon—being trialled in the USA. Interferon is a naturally occurring substance and forms an essential component of the body's own immune system. I felt goose bumps on my arms as I read that the disease for which interferon had achieved remarkable success was a rare and uniformly fatal form of cancer: hairy cell leukemia.
I called my specialist and told him of my find. Thanks to his efforts, two weeks later I became the first person in Australia to receive this wonder drug. Today, interferon is a front-line drug against hairy cell leukemia as well as a number of other once-fatal cancers. Nonetheless, the treatment proved almost as uncomfortable as the symptoms of the disease itself.
Tests to ensure the safety of trial drugs are extensive. Interferon was no exception. I had to undergo more bone marrow biopsies, bone scans, blood tests, cardiographs, liver ultrasound scans, chest X-rays and body CAT scans. I was injected with radioactive dyes and scrutinized on monitor screens in subterranean rooms. I was X-rayed after swallowing porridges of barium and mixtures of alkalis and acids to make me fizz. I was X-rayed standing up, lying down and upside down.
At that time, no one knew what the most effective dose should be. My initial dose was four times what was later considered optimal. For the first few weeks my temperature hovered around 40° C. I had all the symptoms of unrelenting influenza: my teeth chattered, my head hurt. Two large fans helped to cool me down, two hot water bottles and several blankets were used to keep me warm. My blood counts fell even lower, so I had to receive innumerable blood and platelet transfusions to keep me going. To say I felt wretched is an understatement.
When I left hospital after almost three weeks, no one knew whether the treatment had worked or not. It didn't matter to me: I felt as if I had been granted a life pardon.
I gave myself injections for the next three years, during which time my symptoms slowly receded. It was a time to heal, a time to reflect on what I had been through, a time to decide what I wanted to do with the rest of my life—however long that might be.
I began to prepare notes for my first book, worked as a volunteer with cancer patients and then, after further study, began counseling. It was a time of hope, exploration and a new appreciation of life. To cap it all, my eldest son graduated as a doctor.
It was also a time of learning. I realized that not only was there much about cancer I still didn't know, but that most other people knew even less. It seemed that doctors were either reluctant or unable to communicate with their patients, and that people, by and large, are given little guidance on what to do when they are diagnosed with cancer.
These experiences began to crowd my thoughts, and so I began writing my first book, Time of my Life, sharing what I had learned and beginning to explore the themes that have crystallised in this one.
Partly out of my desire to learn as much as I could about cancer, and partly because I was still hopeful of finding some new treatment to cure me completely, I continued reading the most up-to-date medical journals and textbooks.
About a year later, a friend who knew of my odyssey, pointed me to an article in the authoritative New England Journal of Medicine about a new drug being trialed in California. The drug was 2-chloro-deoxy-adenosine, or 2-CDA. According to the initial results, doctors had achieved remarkable success in treating people with hairy cell leukemia and non-Hodgkin's lymphoma.
I contacted the institute that had developed the drug and obtained more information about it. Successful as interferon had been, it was clear that this drug broke new ground. I was determined to take part in the trial even though, as I soon found out, I was ineligible because my blood counts were too high for the baseline required by the trial. To become eligible, I would have had to turn the clock back five years.
Undeterred, I approached a well-known professor of oncology in Australia and gave him all the information I had gathered. I then asked him to help to import the drug from the USA for me. Although interferon had saved my life, my blood counts were still not ideal. In 2-CDA I saw a chance of complete recovery.
'I'll do what I can,' he said. 'But government red-tape is bound to get in the way.'
It was déjà vu all over again.
I did not feel confident when I left his office.
Two days later, at one o'clock in the morning, he called to say that the National Cancer Institute in Washington had agreed to include me in its trial and was sending 2-CDA by express mail. I don't know who was more excited—the professor or me.
Ten days later we started the treatment. For seven days I received a continuous infusion of the new drug. There were no side effects, except from the champagne we drank to celebrate. I was confident about the outcome. Within a few months, my blood counts had stabilized. It seemed we had won not only one more battle, but also the war.
With a sense of having gained a more secure lease on life, I devoted all my working time to writing and counseling. I married a second time. I watched my other two sons graduate, the middle in science and commerce, the youngest also as a doctor. It was a wonderful time of easy optimism.
Then, in the summer of 1995-96, my childhood nightmare returned. For a few weeks I had been swimming in an attempt to regain my fitness. No matter how hard I tried, I could not increase the number of laps I was swimming. I felt as if I were paddling in slow motion through a vat of treacle. I persisted for a while, but there was no improvement. I contacted my cardiologist who suggested I undergo an angiogram to check my heart. A week later, as I lay waiting for this procedure, Fate intervened. I was advised that my physician had injured his back and that I should make another appointment for a time when he had recovered. My physician's assistant asked me when I had last had an X-ray of my chest.
'Why?' I asked. I knew that a chest x-ray was not part of an angiogram routine.
'Your liver is slightly enlarged. I think we should check you out.'
The following day I was X-rayed and diagnosed with non-small-cell lung cancer—a type that rarely responds to either chemotherapy or radiotherapy and for which early diagnosis and surgery were the only hope of long-term survival.
In my first encounter with cancer, the symptoms of the disease had been worse than the treatment; this time it was the other way around. Tiredness apart, I had experienced no other symptoms prior to surgery; but after an operation to remove the middle lobe of my right lung, I found myself in the most unbearable pain. The surgeons had to cut not only the nerves and lining of my lung, but also one rib under my shoulder blade. While they were retracting my rib cage, another rib broke. Every time I breathed, I felt as if someone were scraping the inside of my lung with broken glass. I meditated, visualized, and prayed for relief from my pain. Morphine would have provided blessed relief, but due to my heart condition, it would also have killed me. I gritted my teeth. Thirteen days after the operation, I left the hospital. I had a book to finish.
So what have I learned from these two encounters with cancer, two recurrences of leukemia, five-way coronary by-pass surgery, chronic renal failure and several other life-threatening encounters?
My experiences have taught me that while you can't always change the situations in which you find yourself, you can change your response to them; you can see them as a profound experience in living rather than a nightmare over which you have no control. My illnesses compelled me to rearrange my priorities, learn new coping skills, re-examine my relationships with people—and with God. Surviving cancer has been the most spiritually rewarding time of my life. My prospects of recovery improved from the moment I realized that my physical state was inextricably linked to my psychological and spiritual recovery. The chances of survival were multiplied from the moment I took an active role in bringing these elements together. Both experiences also taught me the value of true friends.
Most people don't know much about cancer until they have to, when they are faced with the diagnosis for themselves or for a loved one. Faced with conflicting advice and the pressures of relating to all those affected by your illness, you need a guide to help you up the mountain (for cancer is a mountain)—and down the other side. I hope that this book can be that guide.
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Last Updated 24 July 2004 |
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