by Erma Bombeck
IF I AM THE MOTHER OF THIS BOOK,
THEN ANN WHEAT IS ITS MIDWIFE...
AND THESE ARE ITS CHILDREN.
Introduction
Whenever I told someone I was writing a new book, they would break into a smile and ask, "What's it about this time?"
When I said it was a book on children surviving cancer, the expression on their faces changed. Their eyes took on a look of pain. Their smiles disappeared and their lips formed a firm line. They looked at me with a pity usually reserved for a woman who had just lost her bank card. When I explained that it would reflect humor and optimism, the look changed again—this time to one usually reserved for a woman who had just lost her mind.
Cancer and optimism were not considered compatible on this planet.
It occurred to me that this is what the children in this book see every time someone looks at them. At the moment they stop being a kid and turn into a child with cancer, the smiles disappear. Every face around them reflects a mixture of sadness, shock, pity or—worse—reverence for someone chosen to suffer.
Okay, to be honest, I had some misgivings myself at first when Ann Wheat, a young, energetic camp director from Camp Sunrise in Arizona, invited me to lunch to discuss a "project." "Kids with cancer need a little booklet or a pamphlet—something to give them a shot of optimism," she said. "Not every kid who has cancer dies, and they need to know that. They are isolated by the disease and its treatment. You cannot imagine how important it is for them to hear the voices of classmates, siblings, grandparents, doctors, counselors, teachers, friends, and parents who share their nightmare.
"You can do something upbeat," she pressed. "I know you can. Why, I'll bet you didn't know that teens have a contest to see who can wait the longest to throw up during chemo."
Be still, my beating heart! Was this the humor on which I was to feed? Without speaking, I summoned the waitress for the check!
Ann fired her final shot. "Look, there are anywhere from forty to ninety percent of kids out there with cancer who are surviving it. They deserve to be counted and they deserve a chance to live their lives as normally as is possible."
She was right. I could gather a few statistics, talk to some people, and pull together a little booklet in a matter of months.
On a Wednesday morning in July 1987, I flew to Camp Sunrise, just outside of Payson, Arizona, to get acquainted with my material. It was your basic camp with musty tents and mosquitoes that should have been required to file flight plans.
The ultimate goals of these campers were not unlike the ultimate goals of campers everywhere: (1) to use food for the purpose for which it was meant to be used—fights; (2) to go home with the coveted Dry Soap award; and (3) to sock it to the staff. The last is deftly accomplished through a sixty-piece kazoo band at midnight, hanging a nurse's bicycle from the diving board, and planting things in the counselors' beds that crawl in the night causing them to hyperventilate.
But the differences in this camp were not exactly subtle. Artificial limbs and a wheelchair were stored in the corner of the lodge. Several of the campers were bald. A counselor with one leg told me how she visited a border town in Mexico that had had a rash of car-stripping incidents. So she took off her prosthesis and propped it up with the foot showing above the window ledge of the van so someone would think the car was occupied. Not your basic crime fighter, but it worked.
But there was another ritual that pointed out how unique these campers are. It happened around three in the afternoon when little kids with holes in the knees of their jeans and sagging socks climbed down from the trees, came down paths from their hikes, and abandoned their places on bases of the ball diamond. They headed for a small room with a handmade sign that read "MED SHED."
Sandra Priebe, who describes herself as a "gofer" at Camp Sunrise, had observed the ritual for several summers. "No one has to call them," she said. "They know. It's med time. They push open the door and leave their childhood behind them.
"As Sean takes his seat at the card table, his eyes lose the impishness and flash with the alertness that one would expect in an eagle. His ten-year-old size conflicts with his technical expertise. He has the ability to scan blood reports with the same rapid comprehension that his peers might scan comic books.
"When his plastic tray is presented to him, he explains to the nurse the procedure while she listens intently. Each tray is a parent's hope; a child's future. The lines are flushed, and proper swabbing is complete. He leaves the shed to resume his civilian job of dirt wallower, teaser of girls, and climber of trees."
When the late afternoon rains came, I joined a group of ten teenagers jammed in a small, parked RV that normally would have accommodated a little retired couple seeing America first. It was the hour set aside at camp to explore and share feelings.
I edged my way past a pretty nineteen-year-old girl perched on a counter with half of her body in the sink. A boy was sprawled out on the bed staring at the ceiling. The rest of us found seats around the small table. Mercifully, someone cracked a window.
As they talked, I saw and heard their uniqueness. Here was a group of children who had been poked at, x-rayed, smothered with love, ridiculed, punctured, spoiled, abandoned by friends, pitied, counseled, experimented with, lied to, protected, resented, and stared at. They had rarely been listened to.
They were children who had been robbed of their innocence and their childhood, neither of which they would ever recapture again.
They were children who had been sentenced to a period of uncertainty and pain usually inflicted on the elderly who had lived rich, long lives. They were little people whom destiny had tapped on the shoulder and announced, "We interrupt this life to bring you a message of horror."
I expected to hear anger about the disease that brought all of them to this airless trailer on a July afternoon. I didn't hear it.
I expected despair over the hand of cards they had been dealt. That didn't happen either.
I expected fear of a future that held no warranties—no guarantees. It never came up.
What they did talk about were the people who don't appreciate each day. One eighteen-year-old talked about his friends on drugs. He told them, "You wanna do drugs? Do chemo for a year. It'll give you the same effect and make you feel just as lousy."
They talked about how wonderful it would be if people would let them get on with their lives. "We need hate once in awhile," said one. "I had a teacher last year who shouted at me on the first day of school, 'Sit down and be quiet!' She treated me like everyone else. I knew it was going to be a good year."
"Yeah," said a sixteen-year-old boy. "It's like people whisper around you and they never laugh. Man, without a sense of humor I wouldn't have made it this far."
As they talked and laughed about their lives, suddenly I felt like I was the innocent child and they were the adults, dispensing wisdom. And I knew then these kids deserved better than buckets of tears and public pity. Their legacy was too important to pack away like a fading photograph. In a world short on role models, they set standards that can never be topped.
They tested drugs and served as experimental pincushions in the war to eradicate one of the most devastating diseases of this century. Without them, this book on cancer survival could never have been considered.
The survival rates tabulated in 1989 by St. Jude Children's Research Hospital in Memphis could serve as a national monument to their courage.
Since 1962, the survival of acute lymphocytic leukemia up from 0 to 60 percent... Ewing's sarcoma up from 5 to 60 percent... non-Hodgkin's lymphoma from 6 to 80 percent... Hod
gkin's disease from 50 to 90 percent... retinoblastoma from 75 to 90 percent... Wilms' tumor from 50 percent to 90 percent... osteosarcoma from 20 to 60 percent.
But, more important, their very being gives us a real sense of what this life is all about if we listen.
The hopelessness I had brought in with me dissipated.
The answer was somewhere within these ten kids. They seemed to have come to terms with their common enemy and were prepared to give it the fight of their lives. I couldn't pity them. Pity is reserved for those who have no fight left in them.
They reminded me of candles in the wind who accept the possibility that at best they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light.
The rain had stopped as we shuffled out the door. Two of the last ones to leave the trailer were Sandy and Anna. Sandy was the facilitator of the group, the one with half her body in the sink. She has Hodgkin's disease.
Her friend, Anna, just graduated from high school. A khaki fatigue hat balanced atop her head.
Her radiance belied the fact that she is under treatment for leukemia.
The two joined arms and sloshed through the mud together as they shared a private joke. They looked to me to make sure I heard it. "So, you come here often?" asked Sandy. "What's your sign?"
Anna giggled, "Cancer, of course."
Both looked to me for a reaction and got one. They were outrageous and they knew it.
On the way home I wondered if an optimistic book on cancer were possible. Did I dare divest these young people of their pedestals? They aren't saints endowed with a special gift. They are children fighting a disease some of them can't even spell. Could I defend their dark humor at the risk of offending people? Was it possible to write a book about life where death sometimes writes the ending?
Where would I gather the material for it, other than camps and stories in the Candlelighters' publication? (The Candlelighters is a grass roots organization that offers support to families of children with cancer.)
In the weeks that followed, news of the proposed book spread. The first wave of what was to become hundreds of letters began to cover my desk. One mother wrote, "Humor is what got all of us through the clinic visits, the hospital stays, the blood tests, the loss of hair and weight. There is always something on the light side if you look for it. I'm sure people think, 'How can he laugh when he has cancer?' Our human nature is such that we can't feel terribly bad all the time."
Another letter from a seventeen-year-old boy said, "Face it. You've got to be like me to really appreciate how silly it is to read a letter in Dear Abby's column about a woman upset because her neighbor hasn't returned her salad bowls. It's like, 'Ooooh lady, how can you stand it?' One of my philosophies is that you know it's happening, so you might as well laugh with it. If I were serious about this situation all the time, I'd be crying all the time. Who wants that?"
As the summer gave way to fall, the responses, from every state in the union and from Canada, France, and New Zealand, filled my dining room table and spilled over into cardboard boxes.
I made my decision. Humor and optimism had kept these kids in the mainstream of life. Perhaps laughing and believing in themselves was a major part of their survival. These were kids who had every intention of living long enough to go to Disneyland, drive their mothers crazy, live in bedrooms that should be condemned, go to the prom, eat pizza for breakfast, and grow old.
I was looking at a book of triumph—maybe not over the disease but over despair. Not only the kids, but everyone who had been touched by cancer had to come to terms with it—the exhausted, guilt-ridden mother, the father who lost his five-year-old child, the sibling who felt abandoned, the camp counselor who couldn't stop crying, the nurses and doctors who were all cried out, the friends who wanted to help but didn't know how.
When the first three chapters of my original manuscript were read around a campfire to see if the children approved of the way "their" book was going, there was silence at first. Then they said politely they liked it, but added, "You just gotta make it funnier."
"Right," I said, jotting "funnier" down on a yellow tablet.
"And the first chapter is all wrong," they said.
"What do you mean it's all wrong?"
They spoke with one voice. "The first chapter should be 'Am I Gonna Die?' because that's what everyone thinks about when they're first diagnosed."
Somehow I knew when I finished this book, I would never be the same person I was when I started it.
1
"Am I Gonna Die?"
"My mother said, 'You 're not going to die.'"
"Did you believe her?"
"Hey, when my mother says something you don't dare question it.”
Ann, age 10
Page, Arizona
This has to be a test.
Not only can I not begin to "make it funnier" with a chapter called "Am I Gonna Die?" but I have the added frustration of everyone thinking I'm writing a book on children with Terminal Cancer. I am writing a book on children with a disease called cancer who, with every day they live, have a better chance of surviving it.
The two words—"Terminal Cancer"—have traveled in tandem for so long, people think they're married to one another. Well, it's time they split. As one doctor put it, "We're all terminal. Only cancer patients suffer from Terminal Cancer. Do heart patients suffer from Terminal Heart Pain or diabetics from Terminal Diabetes? Only cancer has the stigma. It's been criminalized. Besides, only death is inevitable." (With the possible exceptions of Santa Claus and Dick Clark, I would agree.)
If you should run across the word "terminal" anywhere beyond this chapter, be assured it will refer to a bus station or an airport.
"Am I gonna die?" Unless you have God's unlisted phone number in your Rolodex, who knows. Kids who were given lousy odds are still living... some who had good chances aren't.
There's been an abundance of books written about children who die in the last chapter. I've read most of them and they're beautiful and heart-wrenching tributes to their courage. But there are thousands of kids with cancer out there who are alive and who recover to live productive lives. We not only need to know they're there, we need to know what got them there.
The question of "odds" inevitably comes up. The problem is you can't count on 'em. If people believed in odds, who would have predicted that Barbie would be unmarried at age thirty and ride around with Ken in that same stupid cardboard car he had in the sixties.
Doctors especially don't like to quote odds. It's like the kids say: "My doctor's favorite plant is the hedge." They usually say something like there are no such things as chances when you're talking about a child. It either works or it doesn't. There's no such thing as 50 percent or 60 percent or 20 percent. There's either 100 percent or zero. Naturally, they're going for the 100 percent—not the zero.
In nonmedical terms that children can relate to, surviving cancer in the eighties has a lot better odds than having your mother believe you're "doing nothing" when you're locked in the bathroom with the water running and the dog is tunneling under the door.
And they're infinitely higher than a teacher canceling an exam you've studied for.
If you dug up an old medical book from the sixties, it would tell you that childhood leukemia is incurable. The information is not only depressing, it's wrong. You shouldn't read any book on cancer that is older than five years. The progress has been that dramatic.
Most of the books quote Las Vegas odds anyway. They're the ones where the only way you can leave Vegas a winner is when, the moment you get off the plane, you walk right into the propeller. Cancer odds are not that way anymore.
The tide of the battle turned in 1973. It was a big year for cancer patients. They didn't find a cure. But what they did find were different kinds of drugs in different combinations and better supportive therapy to get y
oungsters through the side effects of the drugs.
"Am I gonna die?" The question comes in many forms. Sometimes it's unspoken, but it's there. Sometimes the kids are real "cool" about it, like "I figured I will or I won't." Sometimes they are protective of their parents and insist they leave the room so they can discuss the question with their doctors like it is some kind of a sorority secret. Then they ask questions like "Is there a McDonald's in heaven?" and "Will I see my Grandpa who died two years ago?"
But what keeps surfacing throughout all the letters and interviews is the word "attitude." How important is it to the survival of a patient?
I couldn't find anyone who would rank it right up there with chemotherapy. Some pointed out that a great attitude is not always rewarded. They give it all they've got and they still lose. But a couple of doctors I talked with conceded that although it can't cure cancer, they see some pretty impressive results from being positive. The kids who flat out accept the disease on its terms don't seem to lose as much weight, miss as much school, and aren't in the hospital with infections in between treatments.
Others who are severely depressed throw up more, lose more weight, don't eat well, and don't bounce back as quickly.
Attitude is contagious and, in a family, can be crucial. Kids tend to take their cues from the people around them and handle it accordingly. Better to have a case of out-of-control optimism than to sentence the family to the Temple of Doom.
Several years ago there was a movie called Chariots of Fire. It was the story of a runner, Harold Abrahams, who was a member of the 1920 British Olympic team. After Harold lost a race to his arch-rival, he felt sorry for himself and said stubbornly to his girlfriend, "If I can't win, I won't run." She answered flatly, "If you don't run, you can't win."
"But," he whined, "I've worked so hard, what will I aim for?" She said quietly, "Beat him the next time."
One of the easiest tasks of writing this book was finding youngsters with cancer who had made up their minds to "run and win." They took personal pride in the fact that they were fighting something bigger than they were and stronger than they were... something that might even overpower them. But they still had something their enemy couldn't take away—hope. It's a formidable weapon.