By Clare Buie Chaney‚ PhD

Editor’s Note: Since her diagnosis of chronic myelogenous leukemia (CML) in 1987‚ Clare Buie Chaney‚ PhD‚ has dedicated her personal and professional life to cancer and survivorship. In addition to her private counseling practice‚ which focuses on work with cancer patients and their families‚ she facilitates Cancervive in Dallas‚ Texas‚ for survivors more than six months out of treatment. She serves on the Texas Cancer Council as vice chair for programming and leads workshops in the healing power of laughter‚ caring for caregivers‚ grief‚ faith‚ and parenting. In the following excerpt from her article‚ “Slaying Dragons‚” Dr. Chaney offers hope for those beginning the journey.

“Mommy‚ what makes people die?”

There I was‚ nonchalantly driving carpool and my 4–year–old wanted to discuss death.

“Well‚ honey‚ usually it’s because they grow old. Their bodies wear out‚ and they die.”

“Is Gammy old?”

“Yes‚ she’s 94.”

“Is she going to die?”

“Yes‚ dear‚ someday she will.”

“When?”

“No one knows exactly when they’re going to die. But usually it happens sometime when they’re old.”

“Am I gonna die?”

Gulp. “Well‚ yes. But not until many‚ many years from now.”
“But Mommy‚ won’t you miss me when I die?”

Pause. “Well‚ sweetness‚ I’ll probably already have died by then‚ too.”

Long pause. “Wait a minute‚ Mommy. You mean you’re gonna die?”

Deep breath. “Yes‚ dear‚ but not for a long time.”

Burst of tears. “Mommy‚ don’t die. Please‚ PLEASE don’t die!”

Little did I know the irony of this conversation. Two months later I was diagnosed with leukemia and given a three–year life expectancy.
Crisis

On August 18‚ 1987‚ I pulled into my driveway to see my doctor sitting on my front porch swing. After pacing the direction of the swing‚ I plopped down beside him‚ puzzled by his presence. He then began a stream of tenderly spoken words that kicked me sharply in the face. Dazed‚ I managed to eke out‚ “Thank you for coming here to tell me.”

He said more‚ but I wasn’t there. I was drowning in the echo of the “C” word—Cancer. Finally‚ I said‚ “Is there a cure?”

“I don’t know.”

“How long do I have to live?”

“Let’s step inside.” We did. He took my hands in his‚ looked me straight in the eye‚ and said‚ “I don’t know how long you have to live.”

Heartbreak
Then the tidal wave of tears began. First me‚ then my husband Cal‚ my mother and father‚ my family and friends. We had to cry together. Then we had to cry separately—in closets‚ bathrooms‚ wherever and at whatever hour we could find privacy.

After my initial response of numbness and tears‚ my intellectualizing began. I thought‚ “Elisabeth Kubler–Ross was right: Isn’t the universality of human response to death and dying an amazing thing?” Then‚ intermittently‚ “But my babies—this isn’t happening—it’s a nightmare—I know they’ve made a mistake.” I reviewed the stages of grief I had learned in my graduate studies in psychology: pain‚ shock‚ denial‚ anger‚ despair‚ negotiation‚ acceptance. I’ve felt it all. There was a phase of “Why me? It’s not fair. I’ve led a basically good life. I just don’t deserve this. I have a husband and a 1– and 4–year–old. They need me. The whole thing stinks!”

Then the stage of “despair” reared its ugly head in response to a series of painful procedures called bone marrow biopsies. Compounding the despair were three heart–wrenching days spent at the bedside of my beloved great aunt as I watched her die of lung cancer. The grim reality of death came home to me.

Perseverance
Amid all this chaos‚ friends and family kept saying‚ “You can fight this thing and beat it.” But CANCER seemed so frightening and overpowering. The word still stuck in my throat.

There I was at rock bottom‚ feeling so sorry for myself‚ when I realized I had a choice: bite the bullet or bite the dust. I recalled that as a child I had broken my leg while horseback riding. After hospitalization‚ complications‚ a wheelchair‚ and crutches‚ my parents taught me it was critical to get back on the horse and face my fears. Before sounding the words of the Bach chorale “Come‚ Sweet Death‚” I planned to “negotiate” the situation. I was back in the saddle again.

I began with the slogan‚ “A mommy’s gotta do what a mommy’s gotta do.” Then I did what any other self–respecting‚ obsessive–compulsive‚ type A personality would do: I devised a strategic battle plan for conquering “the monster within.” I began with Sir Winston Churchill’s battle cry‚ “Never‚ never‚ never give up!” I worked from the premise—if it can’t hurt you and it might help‚ go for it.That’s when the tragedy stopped and the adventure began.

Adventure
I called everyone I knew whom I thought had information regarding treatment of leukemia. I read everything I could get my hands on. My treatment exploration led me to M. D. Anderson Cancer Center in Houston‚ where I began 10 months of daily injections of an experimental drug called interferon. This chemotherapy made me sick‚ sapped my energy‚ and thinned my hair. It never put me in remission‚ but it cut the percentage of leukemia cells in half. At least that was progress.

Meanwhile‚ my doctors at Baylor University Medical Center in Dallas determined that one of my three siblings was a genetic match. This made me eligible for a bone marrow transplant‚ the only known cure for leukemia. My immune system would be destroyed through seven days of radiation and two days of intense chemotherapy. I would receive my brother’s bone marrow much like a blood transfusion. I’d have to live in Seattle‚ Washington‚ for about four months‚ where I would undergo the transplant at the Fred Hutchinson Cancer Research Center. Then it would take a full year for me to recover and regain my immune system. I’d spend nearly two months in completely sterile isolation and 10 more months keeping my distance from other people. With no immune system‚ I might not survive a simple cold.

I knew that treatment was life–threatening in itself; the initial odds given were a 50% chance to survive the procedure. Since patients who received transplants within a year of diagnosis had a better prognosis‚ I decided to continue interferon for 10 months and then have the transplant.

I crammed 40 years of living into that time. First‚ I focused on family and friends‚ my social side. I vacationed in Mexico with them‚ went to Disney World with Cal and our children‚ and reunited with long–time buddies and enjoyed a “hugging party.” I laughed until my sides ached‚ cried until my eyes swelled‚ and spoke tender words too often left unsaid. I shared agonies‚ ecstasies‚ and coping techniques with other cancer patients at Baylor’s self–help support group.

I understand why someone once observed‚ “No one on his deathbed ever said‚ ‘I wish I’d spent more time on my business.’” Loved ones are everything. Besides all the relating‚ I ate my fill of healthy food‚ got ample sleep‚ exercised with Jane Fonda‚ and listened to visualization‚ imaging‚ and relaxation tapes.
Conquering my mind was another challenge. I broke my strategy down into four areas:

Interpretation: It’s not just what’s happening to me; it’s how I interpret and respond to it. Do I have a 50% chance of disaster or a 50% chance to live?
Control: I studied all the options I had and prioritized.

Positive self–talk: I acknowledged my negative thoughts and then tried to replace them with optimistic‚ constructive yet realistic ones.

Sense of purpose: Like Alice in Wonderland‚ if you don’t know where you’re going‚ you’ll probably end up someplace else. I confirmed worthwhile goals: Have fun‚ help others‚ learn something new‚ and emphasize motherhood.

For my trip to Seattle‚ I packed funny–bone essentials: For my soon–to–be–bald head‚ a Carmen Miranda fruit turban and an orange punk rock wig‚ I Love Lucy and Candid Camera videos‚ and a calendar to mark off the days. Printed on it was: “The fun‚ excitement and thrill of any activity is in exact proportion to the risk involved.”

I worked at self–acceptance. No matter how bewildering and peculiar we privately think we are‚ we need to accept and embrace our humanity‚ warts and all. I decided I wasn’t so bad for a slightly impatient‚ messy‚ hyperactive person.
Since helping others makes people feel good about themselves‚ I began madly looking for little old ladies I could help across the street. I developed courage‚ guts‚ grit‚ nerve‚ gumption‚ chutzpah‚ intestinal fortitude. It’s the belief that you can do what you think you can’t do.

The time came for constructive goodbyes‚ for putting my house in order. Part of contingency planning is expecting the best‚ but preparing for the worst. I cleaned out my closets‚ evened up my babysitting co–op hours‚ filled out all the parents’ books‚ worked on my living will‚ checked on donating my body to medical research (no one can use radiated body parts)‚ researched children’s books about death like Nana Upstairs & Nana Downstairs‚ wrote Cal and the kids love letters‚ and had a beautiful family photograph taken . A friend even painted a portrait of me. Then I went to the funeral home and made arrangements.

My final area to address was spiritual. Whatever one’s philosophy or faith‚ a central fact remains: We have a dimension that is not physical. Most would acknowledge that there’s greater power at work in our existence. Someone once said‚ “There are no atheists in foxholes.” When facing a crisis‚ it’s natural to do some philosophical and theological soul–searching. My primary view of God and the world had been threatened. It was important to resolve conflicts with a new‚ mature redefinition of values‚ beliefs‚ and faith.As my ministers helped me explore the really tough theological questions‚ I realized there were simply no easy answers. However‚ by reaffirming my faith‚ I derived intense comfort from a strong sense of being cradled in God’s everlasting arms during some of my most terrifying moments.

Before I left for the transplant in Seattle‚ I spent a beautiful weekend in Galveston with Cal and the children‚ which included mud fights on the beach and heartbreaking embraces as we parted. The kids went to Abilene to visit my in–laws while Cal spent six weeks of the most critical period with me. My donor brother Bubba stayed a month; my parents were there the entire four months.After a week of extensive donor and patient testing‚ a catheter was surgically implanted in my chest. From it I would receive my chemotherapy‚ all medication‚ hydration and nutrients‚ transfusions‚ and my all–important pint of bone marrow from Bubba’s hip bone. Since my mouth‚ throat‚ and stomach were ulcerated after the lining was destroyed by a Hiroshima–sized dosage of radiation‚ the catheter literally was a lifeline. In spite of this inconvenience‚ I still had to swallow as many as 56 pills a day.

During the months in Seattle‚ I also was affected by fierce nausea; fainting spells; graft–versus–host disease of the face‚ chest‚ and stomach; avascular necrosis (deterioration of the knee joints); steroid–induced “chipmunk cheeks;” and a black beard.

I stayed afloat attempting my coping strategies and enjoying personal visits‚ letters (that were sterilized‚ then passed through to me)‚ phone calls‚ touching gifts‚ and wacky gimmicks initiated by friends. One of these was a colossal 4' x 6' gram proclaiming: “Even bald Texas women are beautiful.”

I resorted to a few zany antics myself. One day I put up a poster in my window facing the street that said‚ “Help! I’m a prisoner in a Laminar Airflow Unit!”
My return home was delayed when I was stricken with a CMV virus that was rapidly diminishing the density of my new leukemia–free bone marrow. I was rehospitalized and was one of the first leukemia patients to receive an experimental and life–saving drug to correct the problem. My situation got so serious that at one point‚ my doctor‚ knowing that my life was in danger‚ said‚ “It’s time to send for your husband.”While in Seattle‚ we became close to several patients who were also undergoing transplants. We shared pain‚ successes‚ and hopes with them and their families. The immediacy of death in this process was reinforced by the survival rate of these fellow patients. Of the several we got to know well during our stay in Seattle‚ none survived to return for the one–year checkup.

Perspective
Today‚ I’ve resumed my new normal life. I’ve had to call on strengths that I didn’t know I had. Now there is more empathy‚ openness‚ honesty‚ contentment‚ toughness‚ and perspective.

Granted‚ I’ve lost my blissful innocence. I’ve learned life is fragile. But in spite of the pain and the buckets of tears that were shed‚ my cancer crisis has been one of the most enriching experiences of my life. I am now more fully aware and appreciative of the full gamut of life and I’ve found new dimensions in myself.
Every moment I savor and cherish. I smell the grass when I cut it‚ bask in the feel of the sun on my face‚ and watch ants and clouds go by. Life is now more three–dimensional‚ and as the artist Uccello exclaimed‚ “Oh‚ what a sweet thing this perspective is!”

Now more than ever‚ I heed Charles Dickens’ admonition from A Christmas Carol: “There is never enough time to do or say all the things we would wish. The thing is to try to do as much as you can with the time that you have. Time is short and suddenly you’re not there anymore.”

Only in fairy tales does the hero slay the dragon and go on to live happily ever after. In real life‚ the dragons keep coming. When I consider the giants I’ll confront in my lifetime‚ I’ll need the knowledge I’ve gained from these experiences to handle these inevitable encounters. And‚ oh‚ what an adventure it will be!