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Art transforms into compassion
A Cancer Survivors Story: Live the Pain, Learn the Hope Contributed by Mr Wayne Hilburn, a cancer survivor living in USA.

The Tree of Life

Live the Pain, Learn the Hope

The telephone rang at my office desk. It was my doctor at the university hospital.
"Wayne, the biopsy was positive. I would like you to come in so we can schedule treatments for you."

"The biopsy was a positive what?" I asked.

"A reticulum cell sarcoma," answered the doctor.

"Does that mean cancer?"

"Well, yes.

"Oh," I gulped, and then I agreed to the time and date for an appointment and hung up.

A slow, mild electric shock wave began to build up in my guts, and then it smacked me. To be sure, I was stunned; but in a way I was relieved. For a year I had been trying to find out what was causing a swollen gland in my neck, and I had been apprehensive of the possibilities. Now at least I knew what it was and that something was going to be done about it Thus began my dreading determination to see it through.

In 1971, I was confronted with the possibility of imminent death from lymphoma cancer. I have gone through what can only be described as a living hell, an unbelievable nightmare from which I couldn't wake up. I'll probably make it now, because the kind of cancer I had was amenable to treatment and was detected early enough to swing the odds in my favor. For five years my regular three- month checkups have been good, and I'm about to go on the six-month plan. But if I do make it, I'll have very few people to thank. The struggle, for all practical purposes, was mine alone.

There was no one there to help me.

People, and I mean everyone--doctors, lawyers, friends, even family--are so terror-stricken at even the thought of cancer that they are immobilized by the mention of the word. Shocked into inaction. That's why people like me need people like you. You counsel people who want to know what kind of occupation to enter. You counsel people who want to learn how to deal with depression. You counsel people who are having academic problems or marriage problems or general coping-with-life problems. How about some counseling for cancer victims? Don't we need at least as much help as anyone else? Some of us can't get jobs or insurance or bank loans. Some of us have to adjust to permanent disfigurement.

Some of us are dying.

There is no one there to help us.

From my experience, I have come to believe that at present the best resource-maybe the only real resource-that cancer victims have for support, encouragement, and caring is other cancer victims. I found that out by default; I'm a regular middle-class guy with a regular middle-class job who sort of backed into cancer counseling. To cancer victims and their families I represent a cancer victim who is making it through okay and who doesn't seem to be afraid of it all- who, in fact, is apparently enjoying life.

They have so many questions. They want to know what my treatment was, who my doctors were, what hospital I went to, and so on, and so on-in short, the "secret" of my cheerful survival.

The "secret" of my living with cancer has been both medical and personal. Medical-it was caught early, it responded to treatment, and it was handled by truly professional physicians. Personal-it took a year of persistence on my part to find those physicians, and it has taken all the years since to teach myself how to live with this dreaded disease. My story is only one of I don't know how many thousands. Open your ears to hear us, helping person, and stretch out your hand to help.

The Beginning

In 1971, when I first started getting freaked about the swollen gland in my neck, I went to my family doctor. After a routine examination, he explained that I had a swollen gland in my neck and told me to come back in six months. Terrific. I knew I had a swollen gland in my neck, but I was frightened because it had come up so suddenly and wasn't going away. I went to another doctor, one who worked in the same office building I did.

"Yes," this one said, "you have a swollen neck gland. See my doctor friend down the hall." Wonderful.

His doctor friend gave me a test for mumps. "Don't worry," he assured me. "It's just a swelling in the neck gland. Come back in six months."

It was getting too ridiculous. I told doctor number three he had better refer me to someone who would be interested in my medical problem, since he apparently didn't give a damn. That got some action, but by that time I had been to three doctors and gotten two "come back in six months' "and one "hang in there, baby."

The "action" turned out to be a cancer specialist. And I only found that out by accident, when I eavesdropped on a conversation. Not one of those three doctors had ever mentioned cancer directly. The fourth doctor, the one who finally laid it on me on the phone, also said, "I don't know what it is yet, but I'm going to find out." That's the kind of doctor a person should look for, and that's what I tell people who are going through the cancer scare. But I also tell them that getting good medical treatment is only the first part of the secret. The other part, the personal part, can be much more agonizing. It means getting your head on straight and preparing yourself to deal with some very critical emotional problems.

I knew that, win or lose, I was in for a heavy emotional trip. But I decided that, win or lose, it was going to be a meaningful and beautiful trip. I'm still working on it, and I'm doing the best I can, but it's not easy. I'm learning how to live, and I wasn't prepared for the hard work of living.

First comes the bad news, then the good news.

The Bad News:
Fear of Dying

Death is unknown by the living. There's no one around who can tell you what being dead feels like, so you're not so worried about that. The real bummer is to die without having experienced what living feels like. That's the real cheat. Most people suffer from the fear of living. Don't do this, don't do that; it might involve pain, it's too risky, it's too chancy. Not too much pain, not too much joy, just keep to the middle road with your head down to miss the zingers.

Then you get slapped with the message that says: You have cancer. You make a quick choice. Fold or go for the gusto, the brass ring, your last swing on the merry-go-round. It's very tempting to cash in your chips and tear up your membership card in the human race.

You might voice your fear of dying by wondering, "What if I gave a funeral and nobody came?" Self-doubts begin to play tricks with your head, like, "Does anyone give a damn whether I live or die?" You begin to see and hear evidence that nobody does. No one else seems panicky, just you.

The doctor is cool, scientific. Your spouse and parents are cool, sad-looking. Your boss is cool and has a few sad, sympathetic words that sound like "have a good trip" (to wherever).

Maybe you pick on God. "Why me, you son of a bitch? What did I do so bad you want to kill me, you God-creature who decides who gets the short end of the stick?"

Punishment for dimly perceived wrongs? Gray, lurking sins from memory past?

Fear means "they" have suddenly caught up with you.

Time of Death:

The emotional strain begins with "Am I going to die right now? This week?" Then it becomes "When will I die?" The how-long-do-I-have-before-I-die refrain goes on and on till the end comes. This strain is sometimes unbearable when overlaid with other, preexisting emotional problems. All your self-doubts or long-suppressed fears then become major complications. The uncertainty of your personal time of death forces upon you a unique philosophical dilemma: What do you do in the time you have between now and the time you die? And you don't know exactly when that will be. You have to be prepared to go at any time-and on short notice.

Time begins to have a different meaning for you. Time begins to mean now. Even this breath, this heartbeat. Life becomes a numbers game. Without treatment, a 99.999 percent chance of dying. This year's treatment is better than last year's by X percent. Brand X cancer has a 90 percent death rate. Brand Y cancer has a 10 percent death rate (providing Z circumstances are the same). If you live 6 months after apparent remission, odds improve that you'll live for 2 more years; 5 years clean, odds are good for a go at 15. Everything you do, everything the doctor does, everything in your emotional outlook and your environment changes the odds on your living or dying.

Some of you will say, "I could get hit by a truck and die tomorrow!" Yes, but if you never step in front of a truck, you can affect the odds greatly in favor of your living. Once you have cancer, you have bad numbers to work with. And you still have those damned trucks to worry about.

(For all this I get a "hang in there, baby"?)

Relating to Others

Because you have cancer, you will have problems relating to others-family, friends, people at work, at school, in groups. You feel different about yourself and feel that others are treating you strangely now. You speak the word "cancer" and people step back from your breath. It's frightening because nobody knows what it is, what causes it, where it comes from, or how you catch it.

It's unpredictable. You can have it and not know it. You can live with it for twenty or thirty years. Or you can die from it next week. You may get it, be treated, feel fine, and die sixteen years, six years, or six months later. There are no guarantees available for any of it.

Work becomes a problem. The surgery nipped a nerve to a muscle. Your left shoulder doesn't work right. Physical therapy-an hour a day off from work. Teeth go bad from radiation-three days off on annual leave. Radiation treatments-twenty-seven mornings lost. One week with sore throat and laryngitis. Ten days lost with surgery. Company's insurance premiums increase. Yours canceled.

(There is an ad in the paper for my job.)

You are the one who has to bring home the beastly news that cancer has struck. You say the word: cancer. Tears. Crying. Grim fright. Controlled terror.

Helplessness. What would you say to someone you love who has just told you, "I am dying"?

"Don't go."

"When are you going to die?"

"How can you do this to me? What will I do by myself with three children?"

You search for some way to express your love, but words stick in your throat. Trying to breathe is more important than saying everything that is rushing through your head. The best that you can do is hold hands at the kitchen table. Your aging parents are fearful of their own deaths. They can't bring themselves to even mention the word "cancer." They don't mention it for two years. (Are they the ones who don't come to the funeral you give?)

Needing love. And wanting to give out all the love in your body and heart before it's too late. (Last chance before dying.)

All of a sudden I have this desperate urge to see all of my old friends, all of my old places. Where I was born. Milestones in my history to date. Tell old friends in faraway places that I love them. Let them know they made me happy. Thank them for caring. Maybe they'll let me know they care too.

Please tell me I left a shadow.

New friends withdraw. Why risk sorrow and pain by caring, getting involved, investing in someone who will leave you? You die, they cared, they hurt. You hurt them. So you withdraw like a wretched mongrel. You don't fit in. You're only temporary.

(God is merciful, God is love, God eats little children for breakfast.)

How will you counsel me, O helping person? "Hang in there, baby"?

Side Effects

For those people who didn't have unusual discomfort before their cancer was discovered, the treatment becomes the disease by association-the trauma of surgery that leaves you disfigured or missing a limb, an eye, a tongue, a testicle, or a breast. Half a face. Not quite human.

The hair-raising drama of radiation. Millions of volts producing thousands of roentgens. The eerie silence of cobalt radiation. Getting sick to your stomach and throwing up every day at three o'clock in the afternoon. Radiation sickness. Chemotherapy injections once a week, preceded by a shot in the arm or butt that knocks you out for hours so you won't know about the searing agony your blood and veins are going through.

Then there are the little things listed under "side effects of medication and treatment," such as loss of hearing, sight, taste, coordination, hair, or teeth. Inability to chew, swallow, speak. Sterilization or reduced potency/fertility. Arthritis symptoms. Permanent skin damage, burns, sears, rashes. Loss of muscle and cartilage. Your asshole is now a little plastic bag strapped to your waist.

Cancer? The treatment was the worst thing that ever happened to me in my life.

Living with Cancer

"The prognosis is good," says the doctor. Evidence of remission early in treatment program. Blood count rising again. Weight stable. Drop plans for chemistry maintenance program-not needed. Life signs good. Normal recovery from surgery. Scar tissue normal for surgical operation and type of radiation.

"Forgot to tell you. You are now sterile. Hope you didn't want kids."

Now you are faced with the problem of living with, or at least adjusting to, the side effects of cancer treatment. The doctors don't worry too much about the side effects. They're more concerned about keeping you alive. They consult with each other out of your earshot, they think.

"Radical surgery!"

"Massive totalbody radiation!"

"Latest drugs, superstrength!"

"Kill that cancer now!"

"Save this person's life!"

Okay, doctors, you saved my life. Thanks. But how do I live with what life I've got left? Even if the cancer threat is reduced or removed and the patient survives the threat of death from cancer, the person must adjust emotionally and physically to disfigurement, dismemberment, sterilization, or other side effects of the treatment. What say you now, kosmic kounselor:"Hang in there, baby"?

The Good News:
A Philosophy for Living

Not wishing cancer on any living thing, I must confess it was the best thing that ever happened to me. I'm glad it happened, because now I know what living means. I was forced to come to terms with the concept of death, with heavy questions like: What is the value of death? What is the purpose of living? How do I live the lifetime I have left? The prospect of death forced me to look at the quality, value, and purpose of my life. I had to come up with some quick answers if I wanted to use the time allotted to me. The answers came, without my asking.

I had spent months alone with my depression and anxiety, wondering how I got picked for this death number. I remembered stories about a God. Somebody in power who could make deals. The really important deals. I planned my case. I worked up my brief for the judge. If there was a God, I figured, and if this God had something to do with this bad rap, maybe this God would buy my deal. Maybe this God wasn't merciful, but maybe this God would be susceptible to a good trade. The bargaining began.

I laid out what I had to offer, going through the details of my life--good points, bad points, the potential me. I was asking for a future. Some time to be in. Let death pass me by this time, God. What do you want of me, God? What price life, God?

The answers came one Saturday morning when I arose early, fixed a cup of coffee, and waited for the sunrise to come to my backyard woods. I was wrapped in a warm blanket, thinking about this world I share with everyone. The conditions must have been right for a proper meditation, for my mind was free of my body, of the world, to roam over vast stretches of the universe in search of the answers.

I perceived answers to questions I didn't even know I had asked. A feeling of understanding and unity came to me. I felt at peace with all things living or having energy. That tree, that sparrow, that flower and I were one. Equal. You are you, and I am I. Each of us has a meaning, a purpose, a shared existence.

The answers came.

The purpose of despair is to make us hope. The purpose of pain is to give joy its desirability. The purpose of death is to give life its value. Death offers nothing; living includes everything. Living is experiencing all the feelings a human existence offers. Accept what comes; good and bad are equal in value.

Risk. Risk asking yourself for all the strength within you. Risk disappointment in order to achieve a greater sense of participating in life. Risk loving someone as much as you can.

Do. Do as if you will achieve everything. Accept the pain when it comes. Accept the fear when it comes. Suffer the suffering. Accept the joy, the excitement, the peace, the tranquility, the love that comes from others and from yourself. Use the negative to direct you to the positive. Walk through the valley of the shadow of death; there is a better you on the other side. The sun is warmer, the people are friendlier, life is sweeter. Your vision is sharper. You can see and hear, with your mind and imagination, things you could not perceive before.

You will have understanding. That was God's offer to me. The benefits of a full life, but no guarantee on the life span.

I accepted. The bargain was struck.

Love of Life

The worst is over for me. I find beauty in living now. The challenge of living is exciting and beautiful. The risk. The discovery. The new insight into a friend. I am free to love, free to care, free to be hurt, free to be just me. l am all that lever was, am now, or ever hope to be. I can be mature adult and wide-eyed child, excited and reflective, knowing and learning all at the same time.

Being around people is now a creative situation, having the potential for great joy and warmth. I feel the flow of human interaction. I can change the pulse of the personal contact to fast or slow, up or down, left or right, happy or sad. I like the struggle with my feelings. To feel the downs, to work to be up, to let myself soar and float with happy, warm feelings. Oh, so many fantastic days strung together now. A few sad days, but even rainy days can be quietly endured with accepting grace.

Sometimes I am the beautiful day, the cool breeze, the energy from the sun, the warmth from a blanket, the comfort of understanding, the reassuring word, the gentle hand, the restful sleep.

For others. That makes me feel good. I can go now, if it must be.

The greatest gift we can give someone is understanding. Understanding lasts longer, is used more often, and produces more of value than any other gift.

In September 2002, Wayne was diagnosed and treated for Lung Cancer, Stage IIB. He is now in remission. He has it to 71 years so far.

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