By These Things Men Live
Chronicles of a four-time cancer survivor
By Bob Ellal
Edited by John Joss
Published by Night Publishing, Smashwords edition
Copyright © 2010 Robert C. Ellal Jr.
Cover Illustration by Dylan Ellal
ISBN: 978-1-4523-7809-1
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All characters are fictional, and any resemblance to anyone living or dead is accidental.
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Acknowledgements
The land of rugged individualism? It’s a myth—no one makes it alone. This book would not have been possible without the guidance of my good friend and mentor John Joss. At a time when my confidence was at ebb, John gave me the courage to press on. Courage is something John possesses in great measure—it takes much to fly F-14s on and off carrier decks. Then write about it in brilliant prose. John’s impeccable courage and impeccable writing skills inspire me.
Other superb writers have helped me immensely: Tim Roux, whose wry wit and excellent writing helps make sense out of this chaos we call Earth; Bob Grant, who operates the SpeakWithoutInterruption website, a haven for writers. Nick Usborne, oracle for web writers and marketers, for much great advice. Greg Kirk, who lives his beliefs and writes about them eloquently.
Thanks so much to Marilyn Richard, who believed in me when few, if any, did. And you, too, Joanie St. John, for spiritual support. Jerry Monahan—a righteous man.Veronica, Nicole, Donna and Crystal at Ruby’s—for listening. Same goes for Mike at the “99”—my chess master.
Many people helped me beat cancer. My father, who was a real soldier bringing me to my chemo sessions. Thanks, Dad, you’ve always had my back. My ex-in-laws, Ed and Annette Stradczuk—we never would have made it without you. I was extraordinarily lucky to have you as a second set of parents for so many years. Ed—you’re one of the best men I ever met. Geoff and Dylan, my sons, who always wanted me around no matter what the other kids thought—even when my hair fell out and my head was swollen twice its size from steroids. You gave me courage. Mostly, my extraordinary ex-wife, Sheryl: beautiful as sin, highly-intelligent, tough as nails and as hard a worker as ever existed. You stuck with me through the cancer battles and beyond—no one else could’ve taken it.
Doctors and nurses: Dr. Denis Miller, absolutely the best doctor I’ve ever encountered—and I’ve been around more doctors than any man ever should be. And Dr. Stacy Nerenstone, brilliant oncologist—I’m glad you were calling the shots. And to Lori, my chemo nurse—and to all the oncology nurses who kept me from going around the bend in those transplant rooms.
Finally, with the greatest respect, to Dr. Yang Jwing-Ming, for bringing the knowledge of qigong to the West. And to Rami Rones, for teaching me how to strengthen my will.
Dedication
To Geoff and Dylan, my sons, now men and on brilliant paths, and to Sheryl—we made it. A different direction for all of us, but survivors all. Survival is like virtue—it is its own reward.
Soul Brother Beowulf
Unless he is already doomed, fortune is apt to favor the man who keeps his nerve. The maxim from the ancient Anglo-Saxon epic Beowulf reverberated in my skull repeatedly, like a mantra, until the words no longer made sense and were simply a collection of sounds. My breathing slowed and deepened; my mind felt calm. I felt far away from my gurney in the isolation room in the bone-marrow-transplant ward, though high-dose chemotherapy drugs dripped through IV tubes into a catheter implanted in my chest.
Minutes ago I’d been anything but serene; anxiety had welled up inside my chest like a giant palm pressing on my diaphragm.
I watched the nurse open the plastic levers on the IV lines and prepare to exit the room. She stood briefly to give me words of encouragement when she noticed the small stack of books on the wheeled tray near my gurney.
“Beowulf?” She picked up a translation of Beowulf with a photo on the cover of an ancient Anglo-Saxon war mask, iron mouth smiling, spaces for a warrior’s eyes hollow.
“God Almighty, you should be reading something lighter, like War and Peace.”
“I can’t help it—Beowulf is my soul brother. You see, we’re both born monster-killers.”
“Oh, I see.” She shook her head. I forged a smile on my face, hoping it looked grim and determined like the mouth on the iron war mask. As she closed the steel door to the tiny isolation room, signaling the beginning of the month-long transplant process, I scanned my surroundings.
Fifteen years ago the room was state-of-the-art, built specifically for the transplant procedure. At that time, medical experts thought that any hint of a germ would be fatal to the patient after his blood counts dropped to ground zero, so they designed the room to resemble something out of the space program, a combination of the sterility of a NASA “clean room” with the roominess of an Apollo space capsule.
The walls and ceiling were composed of aluminum sheets joined by riveted metal strips, all painted hospital white; the room itself was about 12’ by 12’ and perhaps 6 1/2’ high. The gurney dominated the workspace, leaving room only for a single chair, medical monitors and equipment, and the portable commode with its high back and arms for comfort (useful when diarrhea struck every 15 minutes).
A single window provided a view of the outside world: the hospital parking lots. Its double-paned glass slightly warped the vista and was dense enough to be bulletproof. Terrific—no assassin’s bullet would find me! I was really worried about that possibility.
Those were the old days; today human contact is slightly less antiseptic—the nurses and doctors condom themselves with disposable gowns, gloves and filter masks, bypassing the screen entirely.
Panic. Shallow, quick breathing and thoughts of death pinball through the mind. It’s that door—once the door clicks shut and the air no longer flows naturally into the room, panic sets in.
The noise of the compressor blowing filtered air into the chamber increases the sense of claustrophobia and constriction in the chest. Is this how the gas chamber feels?
Quick: rip the tubes from your veins and escape into the corridor. They can’t hold you here! From outside you hear the sounds of the workmen’s tools as they modernize other rooms on this floor to accommodate future transplant patients.
Steal a hardhat and a pair of coveralls and escape into the working world. It’s Friday, and you imagine returning home after a long workweek. Your sons meet you in the driveway, riding circles around the car on their bikes as you pull up to park.
Then the scene switches. Several boys ride bicycles, including your two sons. They seem oblivious to my presence. They are talking to each other.
“What happened to your father?”
“He died,” the older boy answers, while the younger rides his bike in ever-tightening circles.
“Was it in a war or an accident or something?”
“No, he got sick and died in a hospital.” Your wife comes to the screen door; face puffy, eyes empty, like the hollow sockets in the Anglo-Saxon war mask.
“This is agony! I don’t want to die in this place!”
Keep your nerve, man...yeah, easy if you’re Beowulf, the hero of my long-gone Anglo-Saxon ancestors, a superman who could tear the arms off monsters with his bare hands. But what if you’re me, Corporate Bob, a word-weaver, a man who might be clever with people but can barely tear the arms off a Barbie doll? How do you keep your nerve if you have lymphoma cancer? Huge biceps and a washboard waist won’t help you here.
Damn. I’m in for a screwing this time. This is my second transplant, so I have the dubious advantage of knowing what to expect: Over the next few days, the chemotherapy will destroy my bone marrow and, with luck, all the cancer cells in my body. It also could destroy me by causing a heart attack, damaging my organs, allowing infections like pneumonia to arise, or killing me in numerous other ways.
The less lethal but uncomfortable side effects of the chemo could include rampant diarrhea, nausea and vomiting, fevers and chills, as well as complete fatigue and depression. In short, I am facing what amounts to three or four weeks of a simulated cheap red-wine hangover—one that could prove fatal.
If I survive the chemo, they’ll pour my stem cells (baby white cells harvested from my blood) back into me. These little buggers are smart: hang them off an IV pole from a bag that looks like watery tomato sauce and they swim back into the bone marrow to recreate my immune system.
Of course, something could go horribly wrong, something mentioned in sterile print in the release form I signed before the doctors began the treatment. Sometimes the stem cells refuse to take or engraft properly, and you are left without an immune system. But not for long.
If the stem cells do engraft properly, you’re not home free. No, those nasty mouth sores prevent boredom from setting in. Once a patient’s white blood cell count dips into the nether regions, the mouth sores appear: raw, leprous wounds covering the tongue, the inside of the mouth, the throat and sometimes the esophagus. The pain is so intense that you cannot talk or swallow—never mind eat—without the help of a morphine derivative constantly dripping into you.
Control. I can’t lose my nerve. Okay, Beowulf, let’s step away and observe what is happening. My mind is a tangled jungle canopy. Thoughts careen through the foliage like frightened monkeys chattering and swinging from the vines. I am under heavy stress, in a state of fight or flight. If this continues, the adrenal glands atop my kidneys will continuously flood my bloodstream with adrenaline and other hormones.
Short term, this hormonal boost is positive: it gives humans the energy to handle extraordinary situations, like fighting a monster or escaping from its claws. But suppose the monster is within you, and you can’t fight or can’t run away? The hormones inundating you will overload your body’s systems and eventually burn you up.
Can’t have this! The combination of the cancer and the chemotherapy is enough to wear anyone down. Must seek a state of stillness so my immune system will let the treatment work without interference from my body. How? You know how.
Seize the monkey. The monkey in Chinese philosophy is the emotional mind that chatters unceasingly, cluttering the brain with questions, thoughts, fears and judgments that prevent a calm mental state. This monkey can be dangerous if you’re ill: if the mind is in a state of panic, the body responds and triggers its panic systems.
How to center the mind? With the breathing. The breath is the bridge that links the mind and body. Regulate the breathing with slow, deep inhalations from the bottom of your lungs, seizing the monkey, calming the emotional mind by removing the chaos of irrational thoughts. As the mind calms, so does the body, from a state of alarm to a state of neutrality.
Fortune is apt to favor the man who keeps his nerve: the formula for survival. That is what my Anglo-Saxon will tells me to do. But how do I maintain my nerve over months and years of continuous battles, when fatigue and world-weariness wears me down? What is the mechanism to keep the will strong and prevent it from faltering?
Breathing, again, breathing. When the will falters, when we’re at the breaking point, let go. Don’t quit, that’s different. Let go. Breathe. Let things happen, don’t try to make things happen. As a wise mystic once told me: stop thinking and permit. Permit. Easy to say. Hard to do.
Despite my fatigue I stand near the edge of the gurney, the tubes in my chest connecting me like umbilical cords to the IV bottles hanging from the metal pole. Gently I bend my knees, sink my body and raise my arms in an arc in front of my chest, fingertips a few inches apart, my spine straight, the top of my head pressing lightly toward heaven.
My arms embrace the image of a tree, drawing its clean oxygen into me as it pulls dirty carbon dioxide, cancer cells and toxic chemotherapy from my body. The bottoms of my lungs fill with air, expanding my abdomen and the area in the small of my back between the kidneys.
Focus on breathing, the intermediary between mind and body. In and out, inhale and exhale, no pause, a continuous cycle. Gradually fear dissipates as my mind shifts to the action of my lungs. Beowulf’s formula for survival echoes in my mind and quickly condenses itself to two words: fortune as I inhale, nerve as I exhale. After twenty or thirty breaths the words lose meaning and become mere sounds. The pressure within my chest disappears.
Slowly a ghostly serpent of energy arises within me and spirals its way up my spine. It entwines itself in the intricate web of bone, nerve, muscle and tissue that ultimately connects to every part of my body, preventing it from collapsing to the earth into an accordion of lifeless flesh.
This snake penetrates my brain and drifts upward through the top of my skull into the puzzle of bony plates that seam together in infancy. I exhale and the serpent gathers mass and structure and slithers downward over my forehead to slip through a vagina of skin that seems to open between my eyes. It descends down my throat, behind my sternum, and settles in a coil below my navel, liquefying into a molten, spinning ball of heat that sends tiny, stimulating currents of sunlight into my penis and testicles.
My lungs fill and this tiny sun reforms itself into a great, diaphanous cobra that again winds its way up my spinal column. Now it’s no longer a snake but a spiral staircase of swirling gases, a fragile molecule of DNA, its atoms held together by the opposing forces of electrical attraction and repulsion. Eventually its head catches up with its tail, engulfs it, and it changes into a continuous orbit of energy revolving within my torso and arced arms...
The snake disappears, the image of the tree dissipates, the hospital room dematerializes. I too depart, along with the threat of lymphoma cancer that has dogged me for five years. All that is left is a pulsing of energy that coordinates itself with the action of my lungs, of which I am barely aware. Corporate Bob is no longer an entity, he has melded into the earth and sky.
I’ve seized the monkey. Monsters half-heartedly stir from their corners, moving through me and evaporating harmlessly. Stillness descends like a great, pealing crack of silence. What a paradox! This sensation of peace is not absence of feeling; it’s as though a quiet energy pulses uniformly within me and around me, as though the very molecules of the air are positively charged, alive.
I am still, and this electric tranquility also vibrates in the walls, ceilings, medical equipment and portable commode that constitute this isolation room. It is now my room, my space, my place to heal. Monsters cannot survive here, only heroes.
Qigong—Mind/Body Medicine, or All in My Head?
“Balance your weight equally on your feet. Keep your arms curved in an arc at chest level, fingers a few inches apart, pointing at one another. Relax your shoulders, tuck your tailbone and straighten your spine. Your head should press heaven, as though it’s suspended from above by a string, which lengthens your backbone and creates space between the vertebrae.
“Touch your tongue lightly against the roof of your mouth. Expand your belly and the small of your back as you breathe, and open and close the huiyin cavity between your genitals and anus at the same time. Okay, good…now relax.”
Rami, my meditation teacher, recited the familiar list of instructions for the standing post meditation known as Embracing the Tree. I’d practiced it almost every day since I’d met him, and could maintain the position for one hour without lowering my arms.
That seemed like a major accomplishment: when we first began our private lessons six months earlier, pain from the tumor in my right shoulder prevented me from even lifting my right arm to chest level, never mind holding it there. Since then I’d undergone months of preliminary chemotherapy to eradicate the cancer and prepare for the bone-marrow transplant designed to ‘cure’ the disease forever. I’d practiced the art of qigong— which means “energy study” in Chinese—every day to keep my mind and body strong.
Qigong has been practiced and developed by the Chinese people for over 5,000 years. The exercises and meditations are designed to integrate the mind and body to stimulate the unimpeded flow of chi, or bio-electricity, through meridians and channels in the body. The Chinese feel that this vital energy permeates the universe and can be controlled in the human body through various means such as meditation, herbal medicines, diet and acupuncture. When this chi flows properly, good health is maintained.
Bio-electricity? No one has ever proved that it flows throughout the body. But the brain operates by a combination of electrical and chemical means, as does the heart. Why not the entire body?
Acupuncture—inserting needles at various points to stimulate this bio-electric flow—has been shown to work. Chinese doctors have used it successfully to treat patients for many diseases. They’ve even used it in the place of anesthesia during major operations.
Many Western experts scoff at the notion of regulating this energy flowing throughout the human body. They feel that acupuncture, for example, works because of the power of suggestion: the Chinese expect it to work, so it does. But Asian veterinarians use it as anesthesia before operating on pets. Those Chinese sure have gullible dogs!
Other experts say that the existence of chi can’t be proven under laboratory conditions, hence it doesn’t exist. But what about the force known as gravity? No one denies its existence, yet no one ever has seen gravity or captured it in a test tube or beaker. But we measure its effects every time we walk across the lawn without being sucked up into the atmosphere, weightless.
When it comes to this energy known as chi, experience is the best teacher—you have to feel it operate in your own body. You have to see the puzzled looks on the doctors’ faces when you and your immune system should be as dead as the Hittites, yet both of you are doing okay.
If it could be talked about, everyone would’ve told his brother.
My meditation instructor, Rami Rones, had studied qigong, tai chi chuan, and various forms of martial arts for over twenty years under the tutelage of Dr. Yang, Jwing-Ming, the leader of the worldwide Yang’s Martial Art Association (YMAA) headquartered in Boston, Massachusetts.
Rami had won gold medals in international competitions in the United States and China. After competing for many years and winning, he was looking for new challenges. Dr. Yang suggested he take on one of the biggest challenges: trying to help people with cancer recover by using qigong to complement Western medicine. Through private lessons, he was working with me and several other people to use these ancient techniques to help defeat our cancers and keep our immune systems strong against the onslaught of chemotherapy or radiation treatments.
Rami did not mention the concept of chi the first few times we met. Instead, he focused on the importance of breathing deeply from the bottom of the lungs to oxygenate the blood. He discussed how stretching and slow qigong exercises, coordinated with the breath, could stimulate and nourish the body’s internal organs so that they would function at a higher level.
This was a new concept to me. I’d always thought of exercise as stimulating muscle growth and increasing heart/lung capacity, period. But stimulating the liver and spleen to operate more efficiently? Stretching to massage the kidneys and the adrenal glands to promote better endocrine function? Breathing deeply to pull energy into the bone marrow to bolster the immune system?
People from the East exercise from the inside out, coordinating the mind, body and breathing. They feel that a strong body starts with the torso, as most people eventually will die from organ malfunction, not from a problem with the arms or legs.
People from the West exercise from the outside in, using the mind and breathing in a rudimentary way, if at all. You get bigger muscles, but they don’t help much in fighting disease. I always thought exercise—weightlifting, running, etc.—was mainly to have a better-looking body. I never even considered my internal organs and bodily processes. Facing my third bout with cancer, it was time I did.
There Are Good Doctors…
Cancer, again, for the third time. Five years earlier Stage Four lymphoma cancer had appeared in my right hip and pelvis; six months of intensive chemotherapy eliminated it. Eighteen months later it relapsed in my left hip. Several months of chemotherapy and a bone-marrow transplant at a major cancer hospital in Boston eradicated it. A year or so later a tumor materialized in my right shoulder.
This relapse took my doctor, my family and me by surprise. While normal chemotherapy treatments are like heavy artillery used to bombard the cancer, the chemotherapy used during the bone-marrow transplant I’d undergone was the equivalent of an atomic bomb.
Why should the cancer return if it had been eliminated by this nuclear blast? Why should it appear in my shoulder, instead of my hip/pelvic area, the original site of the disease? What is the sound of one hand clapping? No answers exist to these questions.
But the cancer had reappeared, in the early stages disguising itself as a sports injury. One day after cutting some small trees from the pond’s edge behind our home I felt a twinge in my right shoulder. The consensus was that the ache came from some type of tissue injury, perhaps a torn rotator cuff.
As the weeks passed the pain intensified until I couldn’t lift my right arm. It felt as though a hive of angry wasps had been disturbed in my shoulder, repeatedly jabbing their stingers into the bone, pumping poison into my marrow. I gulped Tylox painkillers around the clock to take the edge off.
An MRI test detected a tumor, and a needle biopsy proved it to be malignant. Dr. N, my oncologist, was at a bit of a loss. People who relapse after undergoing a bone-marrow transplant do not usually respond to additional chemotherapy.
Why? Apparently it’s survival of the fittest; the cancer cells that reappear are the ones most resistant to the treatment. They lurk somewhere in the body, dormant, a time bomb waiting for a fuse to be lit. One day the trigger’s pulled, they awaken and multiply with alacrity. The chemo drugs may have no effect, because these cells have developed a sort of immunity.
Dr. N. recommended another bone-marrow transplant. She feared that the normal CHOP chemotherapy, used earlier to fight my original cancer, would be ineffective. She called the major cancer hospital in Boston, where I’d had my first transplant, to see if the oncologists would take me into their program for another transplant.
The Boston doctors refused even to interview me. They didn’t think another transplant would be successful, as the first procedure failed to cure the cancer. Apparently, there was nothing they could do for me. But I’d been told that before, at the time of the first transplant…
“…I don’t think there’s much we can do for you,” the radiologist from Boston had said, shaking his head and staring at the MRI picture of my left hip and pelvis. He had entered the diagnosis room a minute earlier, holding the MRI in his hand and staring at the floor as he crossed the room slowly to sit in the chair opposite me.
“But I don’t understand—they said I would be a good candidate for the transplant to work…” I stammered. It was the day before my first bone-marrow transplant in Boston, and until then I’d been encouraged by both doctors and nurses.
“Maybe radiation after the chemotherapy could help—but there’s no guarantee. Of course it would have to be administered here in Boston….”
“You think that would do it?” I muttered, trying to regain my composure. “But why radiation here in Boston? My doctors in Hartford were all trained in Boston…”
“We’d have to watch your blood counts carefully, and even then...” His voice trailed off, he sighed, got up from his chair, limply shook my hand and exited the room. Amazing: he hadn’t made eye contact with me the entire time.
That radiologist was like the doctors who recite statistics to patients: “As you can see on this multi-colored computer¬generated bar graph, patients with your grade and stage of cancer have a life expectancy of three to six months” (apparently the attractively-printed chart is meant to soften the blow).
For many patients, this news becomes a self-fulfilling prophecy. They lose hope, become depressed, their immune systems shut down and they make the doctor look like a genius. They die within his or her predicted time span. Do you think some of those doctors are getting good odds in Vegas?
Why can’t doctors frame bad news differently? “You have a dangerous disease, but we have tools—chemotherapy, radiation, surgery—to combat it. People have beaten this disease. I can give you the names of a few to talk to. I’ll handle the medical treatments, but you must be part of this by keeping a positive attitude.” That’s all we want, Doctors: no promises, no false cheer, no warm and fuzzy New Age horseshit. Just a positive outlook and a glimmer of hope.
“…nothing they could do for me”—the brutal insensitivity of the Boston radiologist two years earlier returned to haunt me, like the cancer itself. To hand out a death sentence the day before I began a bone-marrow transplant! When I gathered my wits I called my oncologist at the Boston hospital and exploded in anger at the treatment I’d received:
“You shouldn’t allow that guy to talk to flesh-and-blood people. You should lock him in his room with his X-rays and his isotopes and turn the machines on full blast!”
“Yes, he’s done this to other patients,” the oncologist agreed sympathetically. “It’s really unfortunate, but he’s part of our consulting staff. I wish he was more optimistic with people, but there’s not much I can do.”
Now, two years later, and this formerly sympathetic oncologist pronounces a death sentence over the telephone—not to me, but to my doctor. She wouldn’t even talk to me. She let my doctor do the dirty work.
Why? Admitting me for a second transplant would acknowledge that the first transplant did not work. Failure would adversely affect the hospital’s cure rate, which might affect future funding. It’s a numbers game, like any other business.
Those doctors did not owe me the right to further treatment, but they did owe me a face-to-face explanation. After all, I had endured the grueling schedule they had set up for me: months of preliminary chemotherapy and testing, a month in the hospital for the transplant procedure, then more tests and follow-up visits. Several times I had had to wait over three hours for my appointments, nauseous and weak from chemotherapy treatments. Three hours! The Pope wouldn’t make sick people wait three hours.
In addition, my insurance company had spent well over a quarter-of-a-million dollars for a transplant that hadn’t worked.
But to the doctors at this transplant center I was just an account number that showed up at the top of every billing statement, medical chart, prescription and computer screen concerned with me. Even the plastic ID bracelet I wore in the hospital listed my account number before my name.
…and Then There Are Doctors
“Whatever happens, I’ll continue to treat you,” Dr. N., assured me. “Hang in there.” We had been through a lot together. I had been her patient for almost five years. During that time her twin boys had grown from preschoolers to middle school; my oldest boy from toddler to elementary school. Her newborn son was now a toddler, and my infant son had grown and was about to begin first grade.
“Thanks, Doctor. I’ll hang—because if you’re born to be hanged, you should have no fear of drowning.” I recited Shakespeare’s bravado sentiment from The Tempest, but without much conviction. She nodded, gave my bicep a gentle squeeze and opened the door to the hallway.
I turned back to her and said: “You know, Doctor, it’s easy to appear macho about facing this disease…but when I think about what I have to lose--my wife, my children—I don’t feel so macho.”
Her gaze wavered slightly. It seemed to me that her eyes filmed over. Mine did. In that instant her compassion fissured through the dam of professionalism she maintained to insulate patients from the knowledge of the severity of their condition, as well as keep her sanity.
After all, this was cancer she was attempting to overcome, for me and a few dozen other patients. It was her job to break the bad news about negative test results; she had to deal with the desperation of disease relapses. Despite the best efforts of medical science, she had to watch patients wither from the combination of the disease and the chemotherapy and often, die.
Then she had to go home and pretend it was just another day at the office. Why did she choose oncology when she could’ve had a brilliant career in podiatry?
The next day Dr. N. called. a major cancer center in Connecticut to see if it would take me into its transplant program. This program entailed a rigorous, six-month protocol beginning with three, four-day hospital stays before the month¬long transplant. During these short hospital stays I would be bombarded with about the same amount of ‘atomic bomb’ chemotherapy I’d received during my bone-marrow transplant two years earlier in Boston. Then I’d enter the hospital for the actual transplant and the more lethal ‘hydrogen bomb’ chemo.
Meantime she would treat me with the CHOP chemotherapy protocol. We hoped it would at least control the spread of the lymphoma. With luck it would do more than contain the disease; it could plunge it back into remission. But the odds were against that.
* * *
“Zero doubt. I have zero doubt that you will beat this thing in the long run,” said Denis Miller, M.D. in his South African accent. He’d been our family doctor since my wife and I got married.
I was gearing up for my transplant, soliciting advice and support that would carry me through. Beowulf and his buddies with their war masks would’ve smacked their shields with the flat of their sword blades to get their blood up. How little times change.
“Protoplasm, Bob,” he explained. “You have good protoplasm. And this lymphoma is beat-able—look at that Olympic wrestler who beat it twice. He’s fine now.”
Dr. Miller usually didn’t say much; he’d ask a question and fix a gaze like an X-ray on me while I spilled my guts. So when he talked, I listened.
“Besides, you’re a fighter, Bob. That will make the difference. I wish I could write a prescription for what you have inside and give it to some of my other patients. Zero doubt, Bob.”
Zero doubt. Whenever the fear begins to take over I’ll chant it, a new mantra. Maybe I’ll get it tattooed on my forehead. Zero doubt. Two words of encouragement from a doctor you respect—that’s all it takes to swell your courage. This guy wouldn’t lie to me. He’s a real doctor, and a friend. Besides, guys with X-ray vision don’t tell lies.
Finding the Right Teacher—
Synchronicity or Coincidence?
When the student is ready, the teacher appears. I met Rami Rones by happenstance. The same week cancer was diagnosed in my shoulder, a friend sent me a flyer advertising the opening of a YMAA branch school in Stonington, Connecticut. Rami was coming from Boston to present an introductory seminar on the value of qigong in strengthening the immune system and the internal organs.
Maintaining my body’s immune system was vital to me; chemotherapy kills cancer cells but it also damages the bone marrow, which manufactures the blood cells that comprise a person’s defenses against disease. The chemo can also wreak havoc on the heart and internal organs. Many people die from the chemotherapy long before the cancer would’ve killed them.
Previously I had learned a few qigong meditations from a local tai chi school whose teachers had attended seminars presented by Dr. Yang and Rami. I practiced these standing and moving meditations, and they helped me maintain a good attitude. But something was missing; I felt like I had been taught the form but not the substance. I hoped Rami could bring me deeper understanding of qigong. I hoped Rami could help me save my skin.
“Try this—hold a cane in your left hand, put the tip in your right palm and slowly push your arm up over your head. Breathe deeply, and use your mind to send energy to the tumor in the shoulder.” I followed Rami’s instructions to return circulation to my diseased right shoulder, and nearly threw up from the pain. I hadn’t been able to move the arm for months yet here I was stretching it out at full extension over my head.
Couldn’t I just take a bigger dose of painkillers and hope the chemotherapy would destroy the tumor? Why torture myself with these mind/body exercises? Because I wanted to be healed and be part of the healing process. I wanted and needed control of my existence.
Control. Ha! Cancer is the ultimate state of a lack of control. Your body’s own cells mutate into mindless cannibals in full revolt against their host. Their mission? To be fruitful, to multiply, to eat away at healthy tissue and destroy the body that bore them. It is a kamikaze mission, because the cancer cells die right along with the body. Absalom, Absalom.
Rami designed a qigong program to fit my needs and I practiced diligently, despite the pain. Stretches, warm-up exercises, specific exercises to return motion to the shoulder, meditations and visualizations to eliminate the cancer and build potency in my immune system. Every exercise, from the most basic stretch to the most sophisticated meditation, included the principle that the mind, breath and body should be coordinated. In essence, you put awareness and intention into every qigong exercise, so every exercise becomes a meditation.
During this time Dr. N. treated me with CHOP chemotherapy, which had destroyed the original cancer in my right hip five years earlier but wasn’t supposed to be effective for a relapse. Remarkably, it seemed to work: after several months of treatment the pain disappeared from my shoulder.
The doctor sent me for a gallium scan, a nuclear medicine test, to assess the status of the cancer. Could the lump of lymphoma actually be gone?
On My Back, on the Cold Metal Rack
The nuclear medicine technician injects a syringe containing a radioactive isotope into my vein. The isotope flows through my bloodstream and gathers in any area containing a tumor. The nuclear-medicine equipment would detect this accumulation.
Questions, thoughts and fears clouded my mind as I lay on the metal exam table waiting for the test to begin. Could the tumor be gone? Suppose it has spread to another part of my body? Is the pain I feel in my hips the result of the destruction caused by the earlier tumors, or has the cancer returned?
One of the technicians positioned the scanning machine a few inches above my face. She winked at me, whispered “Good luck,” and went to the control desk to start the test. The technician had run several of my nuclear medicine tests in the past. Maybe she would give me a hint—maybe she would let me know the results so I didn’t have to wait three agonizing days for the radiology doctor to read the pictures, write a report and pass it on to my doctor.
Damn, she’s leaving the room. Another technician is taking her place in the chair in front of the controls and monitors! I don’t know this guy—that means he won’t violate the holy and sacred Prime Directive of Test Technicians and tip me off about my test results.
As the scanning machine hovered over my throat, smoothly inching its way on its metal tracks toward my torso, I squinted to catch one of the test monitors out of the corner of my eye. All I could see was the tiny, faint image of my body on the monochrome screen, legs together, arms glued to its sides, a voodoo doll waiting for its pins.
Maybe I can read this technician’s face and body language to see if he’s disturbed by what he sees on the monitors. The machine is now over my shoulder area. What about the tumor?
The technician wheels in the chair to look at me. He nods; I nod. He looks back toward the monitors, squints, folds his arms tightly over his chest. Folded arms are a bad sign! Does he not like what he sees? Or does he have a stiff back? He stands and paces slowly, looking at the floor.
The machine is over my torso, scanning my internal organs for disease. The technician plops back into the chair and yawns. That’s a good sign; he’s bored by what he sees, unless maybe he stayed up too late last night watching a hockey game.
His brow furrows and his lips purse. What does that look mean? Is that my liver flaring up on the screen? Is my liver cratered with tumors? Maybe not—maybe this guy’s just in a bad mood, thinking about a fight he had with his wife…he isn’t even looking at the monitor...
I shut my eyes and feel the tension in my body. This is madness; I’ll go mad trying to read something into this guy’s face. He probably just hates his job, or his boss.
I focus on the tightness in my temples and unclench my teeth. My forehead relaxes as I imagine my lungs pumping breath into it, calming it. Slowly I repeat this procedure with my neck, shoulders, arms, chest and downward, scanning my body for tension, finding it and using my mind and breath to release it.
I am calm. But what will happen when I go home and wait for the test results?
Decoding the Language of Great Birds
A heron, bluish-gray and about four feet tall, stalks fish and frogs in the reeds on the other side of the pond behind my house. Deliberately it raises a reed-colored leg and carefully places it into the water a foot ahead of its other leg, barely disturbing the placid surface in the process. After many minutes of standing motionless it will raise the other leg and repeat the process.
Sooner or later a fish or a frog will mistake one of these legs for a reed and the eight-inch beak will pluck it from the water and effortlessly gulp it down its S-shaped neck. Then it will carefully move its other leg…
I mimic the crane, shifting the weight onto one leg while gently raising the other and placing it mindfully on the ground a couple of feet in front of me. Then I fill that leg with my weight and repeat the process with the other leg until I’ve done it fifty times.
This is the qigong exercise known as Fifty Steps. It’s designed to strengthen the bones and muscles of the legs and foster better balance. Chinese martial-arts masters had observed the movements of cranes in various provinces of China and patterned the exercise after the great bird’s patient actions.
Rami had shown me Fifty Steps to make the bones stronger in my cancer-ravaged hips. Luckily for me I had an equally expert, though unknowing, teacher to follow. The great heron would stop by our section of the pond about once a week or so and I looked forward to its visits. I admired its patience in hunting for food; instinctively I felt I had to adopt the same forbearance to continue living and fighting the cancer.
At the beginning of our first lesson, Rami had asked me about my emotions and my mind-set. How was I coping with the relapse of the disease? How deep was my discouragement? How strong was my will?
I told him about the heron and how it symbolized patience and endurance to me. “Then let’s be like the crane,” he said. Immediately he stood and began demonstrating a standing meditation exercise from White Crane kung fu.
The exercise was designed to imitate a crane that had just landed on a stalk of bamboo, balancing itself by slowly flapping its wings. Cranes, like other long-flying birds, initiate the flapping motion from the center of their bodies, which gives them the power and endurance to fly great distances.
A person could emulate this motion by standing straight, feet shoulder-width apart, gently rocking back and forth on the soles of the feet, arcing the spine, chest and shoulders. The hands and arms follow this motion, gently rising and falling in front and behind the body like wispy clouds of incense smoke. You inhale as the body arcs and the arms ‘flap’ forward, and exhale as the body expands and the arms descend behind the body.
Six feet tall, dark and lean, Rami performed the movements with the fluidity of a panther. His body moved like a soft whip. Six feet tall, pale and bloated, I executed the exercise with the grace of an overweight, arthritic stork. My body moved like a collection of rusty hinges. As I arced my spine forward, the vertebrae popped and creaked.
“Don’t worry. Practice. Just practice, it will come,” he’d say with encouragement. So I practiced.
The movements of this exercise stretch and relax the entire body, starting with the spine. The deep breathing oxygenates the blood. By focusing the mind on the combination of movement and breathing, you stop thinking. The continuous stream of thoughts that pass through the mind dwindles, and the exercise becomes a meditation.
As you perform this meditation, problems disappear. The cancer disappears. Time, or the conception of time as a linear vehicle divided into years, days, hours and minutes, disappears. Throw out clock and calendar. There is only the present; there is no past to ponder, no future to consider.
Sometimes even the present disappears; I lose awareness of myself, as a being consciously breathing and moving my body. It’s as though an outside agency has taken over and is breathing for me. Don’t worry, Corporate Bob, just relax. We’ll handle that demanding job of breathing for you.
Then, unfortunately, awareness pops back into my head. What was that all about? Where was I? Wherever I was, I want to go back.
I finish the meditation. My body is relaxed and stretched, my mind calm and refreshed. This feeling will last for a while, like the runner’s high that athletes experience after endorphins are released into their bloodstream during high-intensity, aerobic exercise. Except I feel calmer than that: I don’t feel gung ho, as if I could conquer the world for the next two hours—it wouldn’t even occur to me. I don’t want to conquer the world. I just realize that I can live in it without it conquering me.
Dr. N called me with the test results: No cancer in my shoulder, or anywhere else in my body. Tremendous news! Yet she and the transplant doctors recommended I proceed with the second bone-marrow transplant. They felt it was the best shot for eliminating any remaining cancer cells once and for all. My euphoria faded at the prospect.
I glanced outside at the pond. The heron was on the other side, standing motionless on a small sandy beach, wings half¬extended to allow the sunlight to penetrate fully to its steel-gray body. I had never seen it adopt this wide-open posture before. Don’t lose your nerve now, Bob. Stand up and be ready, it seemed to be saying.
Never was I one to believe in omens, especially from birds, or from the entrails of birds, but there was no room for doubt at that moment.
Carefully I opened the French door leading to the deck surrounding the back of my house and moved to a spot where I could face this magnificent creature. I extended my arms halfway from my body, holding my forearms at a forty-five degree angle to my upper arms, mimicking the crane’s posture. I closed my eyes in silent salute and focused on my breathing.
Twenty or thirty minutes later I opened my eyes. The crane was gone, and it had taken my fear with it.
A Last Wish for Christmas?
It’s Christmas Eve, forty degrees, raining. I’m facing a bone¬marrow transplant. Rain beats steadily against the roof, then echoes hollowly as it runs through the aluminum gutters surrounding our home. Traditionally this evening is when my wife Sheryl and I exchange our gifts. On Christmas morning Geoff and Dylan unwrap the loot Santa left.
It’s impossible to feel festive with the sword of cancer hanging over our heads. After the New Year I’ll have my first mini¬transplant stay in the hospital. I’ll have the second in February, the third in March. In April or May, depending on my blood counts, will be the actual transplant.
Last week I had a dose of CHOP chemotherapy designed to shrink the tumor in my shoulder as much as possible before the transplant. Next day, woozy and tired, with a feeling that a hot liquid was bubbling inside my skin, I went Christmas shopping at the Rhode Island malls. I wanted to get it done before my hair started to fall out.
Sheryl and I were at the point in our marriage where we no longer bought each other big-ticket items at Christmas. We spent the lion’s share on presents for the kids. Gifts for each other were now almost an afterthought. It was clear that in a year or two they wouldn’t even be that.
How depressing that a once pleasurable activity—running to the malls for weeks before Christmas to find the right gifts for one another—had become almost a chore. Was this the normal evolution, or the dissolution, of a marriage? Or had the presence of cancer accelerated this decline?
A mirror presented itself as I veered into Filene’s to use the rest room. The dose of chemo from the day before had reddened my pale cheeks and made them puffy. I stopped and smoothed my hair back from my sweaty forehead. I did it again and noticed a clump of dirty-blond hair smeared across my fingers and palm. The medicine was moving very fast.
On the way out, on impulse, I stopped into Victoria’s Secret and bought a nightie for Sheryl. It made me think back to the days before all this cancer business, when we still were passionate about one another. Could we ever recover that feeling?
In the last few years, repeatedly, continuously, we summoned up our willpower and courage to fight a life-threatening disease. Add this to parenting our children, and no energy was left for passion. Did I think a nightgown could turn back the clock? No. I was just being nostalgic. That seemed a glum thought—in your thirties and already looking back.
After we arranged the children’s gifts under the tree we opened ours in front of the fire. Sheryl opened the box with the nightgown and stared at it silently. A few minutes later she disappeared, then returned wearing it. Merry Christmas, Bob.
What a force, or instinct, is the sex drive! It could even make cancer disappear, at least for a short while. If this power could somehow be harnessed, loaded into a gun and pointed at a tumor or a disease! Nothing could withstand its impact.
For a short time, instead of fear I experienced most of the entire catalog of male feelings and emotions: Lust, passion, power, conquest, intense pleasure, an explosion that took me away from myself, exhaustion, then contentment tinged with sadness, a sense of safety being entangled in my wife’s body, a feeling of nurturing, compassion and love. Everything but anxiety and terror.
Not to worry: the cancer and its treatment provided those last two feelings. What a silver lining! The disease had made me a complete man. Thank you, Monster, for grounding me firmly in reality. Thank you, God, for letting me experience every emotion a man could feel.
But while you’re handing out Christmas gifts, Lord, please do me one more favor: Please, Lord, please, do not let this be the last time I make love to Sheryl, my wife.
A Painful Journey to the Center of My Immune System
The top half of my butt throbs. A few hours ago the doctors put me under, then inserted thick needles attached to syringes approximately one hundred times through the surface of the bone at the back of my pelvis. Each time they pulled marrow from the inside of the bone. They deposited this bone marrow into plastic bags and froze it. Later they’d drip it back into me, after the high-dose chemotherapy had destroyed the rest of my marrow and, with luck, the cancer cells remaining in my body.
Thank God I had anesthesia: when the bone marrow is merely tested for the presence of cancer cells, the doctors perform the same procedure, but only once. They do not endanger a patient with unnecessary anesthesia or pain medication for this test. A needle with the diameter of a drinking straw is plunged through your buttock and into your pelvic bone; as it sucks the marrow through your pelvis into the syringe, it feels as though a molten wire is being drawn through the center of the bone. It is a very medieval procedure, practiced with the most modern of technology and science.
At times like this, times of excruciating pain when consciousness is altered, one can achieve marvelous breakthroughs in understanding. For instance, during my first bone-marrow test I gained a profound insight into Einstein’s Theory of Relativity, the relationship between time and space. The five seconds or so it took for the doctor to syringe a core of marrow from my hip seemed like five eons to me. Where pain is concerned, time is relative. Perception of time is influenced entirely by position in space: which end of the syringe a person is on.