by Erma Bombeck
Tommy lost hair on his legs and arms, but the hair on his head remained intact. When he went to the clinic, he was "different." Everyone there was bald. They looked at him and wondered why he had hair. They talked about him. Some were even rude enough to ask him why he had hair. He wasn't one of them. He didn't look like them, relate to them, or feel that he belonged. About a year and a half into his treatments and after months of begging, his mother finally gave in and shaved his head.
Okay, so maybe his desire to be bald hinged on the fact that at age four, he hadn't had time enough to get seriously attached to his hair, but he got the peer pressure part right.
For awhile, Tommy loved being called "Baldy." But eventually, he came face to face with discrimination again. This time by those who had hair. Whenever he left his own "group," people would stare and make comments.
Everyone handles the Chemo Cut in his or her own way. Some wear scarfs, some take cover under hats, and some wear wigs. But the wigs are hot and the selection is limited, especially for children. Get real! Who wants to look like Eva Gabor when you're six years old? So the kids get pretty "creative" with their answers when someone asks "What happened to your hair?" These are some of them:
"I got sick of getting shampoo in my eyes."
"The wind just blew it out."
"My father is Kojak."
And I loved this one: "I just joined the Marines."
I couldn't resist adding some of my own. "What happened to your hair?"
"I sold it."
"Bad genes. My mother is bald."
"You'll never guess why I just fired my hairdresser."
"I traded it for this body."
"I was having a makeover and ran out of money."
When the Grateful Dead rock group brought its concert to Cape Charles, Virginia, Lynn saw possibilities for her bald head. Using magic markers, her friends drew the Grateful Dead logo on her skull and caused a mild sensation. Everyone at the concert thought it was far out and wanted to know how she ever got her mother to let her shave her head.
Lisa also had a flair for the dramatic. She was in a wheelchair in the hospital wearing a wig when two small patients stared at her. She stared back.
When she said, "Hey, you want to see what happens when you don't eat your vegetables?" With that, she whisked off her wig as the two kids darted back into their rooms. Later, Lisa told her brother, "I wonder what the dietitian will think when they have a run on broccoli?"
Another child became a walking billboard for Harley-Davidson when he transferred a decal onto the back of his head. David was entering his sophomore year at school and figured he'd let his T-shirt do the talking. The front of it read, "So what are you staring at... some of my teachers are bald too." When he turned around, the second part of the message read, "Only I'm better looking." It got him through some tough times.
If you don't believe that hair is for the birds, listen to Erin's story. After six months of chemotherapy to fight a kidney tumor, the four-year-old lost her hair. A hairdresser and friend of the family suggested she save it and put it out for the birds so they could use it to make nests. Once the word got out, Erin became a clearinghouse for everyone who cut their hair.
Five months after she started collecting everyone's hair, a park ranger took her out to the state park to see if her loss had been the birds' gain. Sure enough, they found several nests with Erin's recycled hair.
Being bald in a hairy world isn't easy—even for adults. Sportscaster and author Joe Garagiola told Johnny Carson one night he hated it when people asked him when he lost his hair. "They act like I've misplaced it," he said. "Or worse, they wonder why I don't go for a cure for baldness. It's not a disease like athlete's foot or a headache. And how many times can you laugh at 'Hey Joe, you know what stops falling hair? The floor!'?"
Carl Reiner, a hairless actor-producer, has made up his own rules about baldness. "Anyone who wears hair during the daytime is overdressed," he said.
Many find that humor somehow surfaces in the darkest hour. Take Samantha. She was a certified thumbsucker and hair twister who, after five months of chemo, lost most of her hair and "twisting" became a major challenge.
One evening as she readied for bed, she begged her mother to sleep with her. Her mother used her seventeen reasons not to, ending with the one that has always worked with kids: "Gee, Mommy and Daddy have to share a bed, but you're so lucky you get a bed all to yourself." Samantha wasn't buying. She still wanted to sleep with her mother. Finally, her mother turned to her daughter, exasperated, and said, "Samantha, give me one good reason why I should sleep with you."
With large brown eyes she looked up and said, "Because I don't have enough hair to twist and you do!"
The good news is that hair is a perennial. It comes up year after year. So you have a bad season and lose a crop of hair to chemo. One day you'll see a shoot surface, followed by a field of fuzz, until one day your mother will be banging on the bathroom door, reminding you that your three-thousand-dollar head of hair is overbudget and if you don't stop washing it so often, you'll be bald.
Mothers. Where do they come up with this stuff?
7
What's a Mother For?
At one of David's checkups I took one look at his lung x-ray and everybody in the room noticed the color leave my body. There was an obvious large shadow. His oncologist took one look at me and said, "It's okay, Mrs. Peterson, that's David's heart you're looking at.”
David's mother
Two Rivers, Wisconsin
WANTED: Woman to raise, educate, and entertain child for minimum of twenty years. Be prepared to eat egg if the yolk breaks, receive anything in hand child spits out, and take knots out of wet shoestrings with teeth. Must be expert in making costume for "bad tooth" and picking bathroom locks with shish kebab skewer. Seven days a week, twenty-four hours a day, including holidays. Comprehensive dental plan, vacation, medical benefits, and company car negotiable.
If there were a job description for motherhood, that would be close. If the job description included mothers of kids with cancer, you would have to add: An additional forty hours a week set aside for reading magazines in doctor's waiting room, chauffeuring child to and from treatments and therapy, standing in line getting prescriptions filled, and running errands. Sustaining guilt for not giving enough to other members of the family. Major worrying twenty-four hours a day. Must possess maturity to realize that you can't "kiss cancer and make it well."
All of it sounds like the old ad they used to run for Pony Express riders: "DUTY IS HAZARDOUS. ORPHANS PREFERRED." But mothering is survivable. It just takes conditioning and an emotional yo-yo with a long, strong string.
Worrying is a priority. Estelle, a mother from Path, Rhode Island, succeeded in elevating it to an art form. "As a parent, it was my duty to worry. As the parent of an oncology patient, I perfected it. I would keep lists in case I forgot one. With each new piece of information, I would revise the list, developing intricate new worries.
"Within a six-year period I had a list of 142 things to worry about. Six actually happened, including two that were not even on my list. I guess
I wasn't as efficient as I thought I was, but I keep practicing."
Practice! Practice! Practice! Tommy's mother of Buffalo, New York, was hysterical when Tommy fell flat on his face while crossing the street. “Tommy! Tommy! What's wrong? Why can't you walk?" He looked up and said, "Because my shoestring is untied."
When Steve started to scream from his room in the hospital, his mother in the hallway alerted the emergency room staff, who raced to his bedside with their equipment only to find Steve watching a ballgame and explaining, "It was a bad call on Yaz" (Carl Yastrzemski of the Boston Red Sox).
Raising children who do not have a life-threatening disease has some shaky rules at best, but at least there are rules. With a sick child, there are few guidelines and you don't know which rules to keep and which ones to toss out.
When your twelve-year-old daught
er with leukemia confronts you on her way to a dance in the school gym with, "Momma, do you honestly think anyone will dance with a twelve-year-old bald-headed girl?" how do you answer her?
You're doing the best you can when one day your child's doctor challenges you with "You think Sam is going to die, don't you?" When you shout No!, he says, "Then why are you treating him as if he were?"
How do you deal with the ambivalence when you yell at your son in the morning for bleeding on the carpet, yet sit in his room at night as he sleeps just watching and wanting to be near?
How do you handle the anger of hearing just one more smiling-faced, thoroughly well-meaning person say, "I don't know how you've done it. You've been through so much"—like you had a choice.
There's the usual advice from mothers who have been there and know what they're talking about: "Get your rest, let your husband handle some of the burdens of the treatment, try to talk to someone about something else besides cancer and buy yourself something whether you need it or not... indulge yourself and don't lose your sense of self."
But mostly, it's telling yourself there is nothing you can do to change your situation, so you hang on to all the normalcy and humor you can get.
In the chain of command in this war, mothers are responsible primarily for transporting and feeding the troops who fight the disease each day. Sounds simple, doesn't it? Everyone knows children are picky eaters. Normally, they won't eat anything mothers pack in a paper sack with their name on it or any food that hasn't danced on TV.
But the eating habits of kids with cancer run the gamut from eating one banana a day and throwing that up while he or she is in chemo to going through a condition we call the "prednisone pig-out."
Prednisone is a drug that reacts differently on different people, but on some, the side effect is an insatiable appetite... like an Orson Welles wish. Providing food to a child on this drug could become an aerobic exercise for mothers.
Some kids have the pizza parlor's phone number memorized. It is not unusual to scarf down three hamburgers, a chocolate shake, and french fries at one sitting only to finish it off with a couple of turkey sandwiches, a half a pie, and a dish of pasta.
Some awake lusting for garlic chip dip and potato chips at 1:00 A.M. Others request broccoli for breakfast without blinking an eye.
If we were giving medals for patience and stamina, Jeanne, a mother from Woburn, Massachusetts, would be right there in the top ten.
Her son, Bobby, was diagnosed as having leukemia at age three and when he became thin and weak, his doctor prescribed prednisone because he thought it would improve his appetite. He warned it would probably cause mood swings.
"Well," thought Jeanne, "I'd gladly put up with mood swings if it would improve his appetite."
They had no sooner hit home when Bobby announced, "I'm hungry. Get me oatmeal—instant oatmeal and cinnamon toast." Jeanne gladly prepared it. "He ate quickly and with a serious expression on his face, similar to that of a wild animal feeding on prey," she observed. "When he finished he said, 'More toast.'"
Nine slices later, Jeanne was out of bread and was ordered to go to the store. She talked him into eggs and as she was preparing them he snatched a bowl of gelatin out of the refrigerator. As she put the last spoon into the dishwasher, he boosted himself up to the freezer and came out with three frozen pops. After inhaling them, he rested.
"My once-pleasant little boy had his mood swings to that of a hungry animal," she said. "He continually stalked the kitchen. One day when he was particularly weak, he got to the refrigerator by wagon, pulled by his two-year-old brother." (She enclosed a picture of an adorable toddler pushing an equally adorable child in a little red wagon.)
"He hid hot dogs in his overalls pockets, he sneaked cheese into the living room while I was in the bathroom. Neighbors and relatives were 'robbed' of their cold cuts when we visited.
"When the doses were lowered and his therapy became regulated, he had treatment for three weeks and the fourth week was a rest. During that fourth week of the cycle, Bobby would develop a main craving of one particular food. One week it was whipped cream. Then suddenly he'd switch from whipped cream to corn on the cob. Which wasn't exactly plentiful in January in Massachusetts," said Jeanne.
"He often awoke in the middle of the night to eat. He had a week of craving pork fried rice, which kept my husband running back and forth to the Chinese restaurant. One morning at 3:00 A.M. I found myself leaning on my kitchen table, supporting my head with my arm, while my somber-faced .on sat opposite me waiting impatiently for the toaster oven to finish warming the rice."
There is not a woman who has suffered from morning sickness who will not empathize with Jeanne. She was two months pregnant when Bobby developed a love affair with chicken drumsticks or "meat on the bone" as he referred to it. He had it at every meal, and at breakfast one morning in the hospital, Bobby sat eating "meat on the bone" while Jeanne hung her head out of the eighth-story room sucking in "chicken-free air" and moaning, "Oh Lord, have mercy on me."
The second year was easier as Bobby went into his fruit and vegetable cycle. Along with his diet, his moods began to improve.
In February of his second year in therapy, it snowed heavily in Massachusetts. Jeanne bundled up the boys and began rolling snowmen on the front lawn. They put a head on "Frosty" and she went inside to get some chocolate cookies for eyes. Bobby had his own ideas. When Jeanne returned outside, she noticed Frosty with a carrot nose and two carrots stuck in his backside. Bobby held her hand and said proudly, "Frosty's getting a bone marrow and a spinal tap." It was a snowman he could relate to.
Bobby had come a long way. A year ago, his snowman would have been standing there in the buff—Bobby would have eaten the carrot nose and the needles for his spinal tap and bone marrow.
"There certainly isn't anything funny about cancer," said Jeanne, "but it did bring about situations that were quite humorous... especially looking back at it now."
I've saved worshipping at the Shrine of Perpetual Guilt until last because mothers (who invented guilt) have devised more ways to punish themselves than any other species on the earth. They visit the shrine daily laying at its feet such wondrous questions as, "How could I have permitted this to happen to my child?" "What kind of a mother am I who can laugh at a Bette Midler film when her child has cancer?" "I have no right to question God about how long I have to endure living like this." "Forgive me. I locked the bathroom door again and pretended I wasn't there." The list goes on.
Mothers are programmed to bring a child to maturity and by all that is holy they will use everything they have to bring this about. Their determination... their fight... their courage... their love... are invested without question. There is no force on earth quite as powerful as a mother struggling to restore her child to its original perfection—no matter what it takes.
She is not unlike the story of the Jewish grandmother who took her grandson to the beach one day, complete with bucket, shovel, and sun hat. The grandmother dozed off and as she slept, a large wave dragged the child out to sea. The grandmother awoke and was devastated. She fell to the ground on her knees and prayed, "God, if you save my grandchild I promise I'll make it up to you. I'll join whatever club you want me to. I'll volunteer at the hospital, give to the poor, and do anything that makes you happy."
Suddenly, a huge wave tossed her grandson on the beach at her feet. She noticed color in his cheeks and his eyes were bright. He was alive. As she stood up, however, she seemed to be upset. She put her hands on her hips, looked skyward, and said sharply, "He had a hat, you know."
Mothers of these sick children don't want to hear this, but generally they are an impressive force who possess all the human frailties and flaws we all possess, but somehow they rise above them... laughing when they can and crying when they must.
There is no major, one-way, well-paved super six-lane highway to survival, dotted with rest stops, facilities, free road maps, and other travelers to offer advice on condi
tions ahead. Everyone must travel her own route to get where she wants to be.
When Sandra Bakun arrived at her destination, she found she was not the same woman she was when she started the trip.
But then, most mothers aren't.
A Mother's Vigil
They were driving home from Boston when Jill declared in no uncertain terms she wasn't going through it all again. Her cancer had returned and she wanted no part of it. She was not going to take her medication. She was not going for her treatments. She was not going to lose her hair again.
"Then you're committing suicide!" yelled her mother. "I don't want you to die. I'll tie you to a chair and stuff it [medicine] down your throat! You're talking about losing your stupid hair! We're talking about your life!"
Somehow, it was hard to imagine that this tall (5'11"), slim, soft-spoken woman sitting across from me in a Boston hotel room had ever raised her voice. Even the speech didn't seem to fit.
But it wasn't an ordinary day for Sandra Bakun or her daughter. After battling leukemia for six years, Jill relapsed and that day Sandra became a force that even she didn't recognize. Maybe for the first time she realized cancer wasn't going to be an interim—it was going to be as much a part of her life as breathing. She could drown in it or she could learn to swim.
At forty-six, Sandra Bakun has spent nearly two-thirds of her married life administering to a child with cancer. For seventeen years, her emotions have soared and plummeted like a roller roaster through two diagnoses, two remissions, and a relapse.
The struggle of Jill, her two sisters, her brother, and her father are all stories of special courage. This, however, is the story of a mother who was invited to stand "watch" in a war and knows she can never go home again.
Like any veteran, Sandra can resurrect her life in "peacetime" on cue. It's like an old, familiar picture that you carry in your billfold to remind you what you're fighting for.