by Erma Bombeck
Each member of the family lined up to compete with one another to claim responsibility for this dreadful disease.
One father said he dropped Agent Orange from his helicopter in Vietnam, and he was sure he was responsible for his daughter's cancer.
Another father said he had smoked a fair amount of pot in college and was sure it had something to do with his daughter's illness.
A mother said she smoked a single cigarette when she was pregnant. Pick me!
A young brother of a cancer patient said he had once silently wished his brother dead so he could have his bike. He was sure he was being punished.
A ten-year-old said she got cancer "when I was still in my Mom's stomak [sic] and she went across this river and across the river was a power plant that caused my cancer."
And a grandmother offered this entry: "Do you think it could be because he wouldn't eat carrots? I told you he needed more vegetables." (Why do I have a gut feeling that the cause of cancer will never be anything that makes you thin?)
As one doctor said emphatically, "The one thing that is important for families to know from day one is that even if we knew that this was gonna happen, there is absolutely nothing that we could tell you that you should have done differently that would have made any difference because we just don't know where it [cancer] comes from. They need to know that."
So, why don't they understand what they've got?
Many people are intimidated by doctors. They feel intimidated by them because they look busy and sound breathless all the time. People also feel stupid when they don't understand what a doctor's talking about the first time around, so they don't ask again. And let's be honest here, people. English is not a doctor's first language.
If you go to a doctor often enough, after awhile you sorta figure out that when he says "I suggest the removal of superfluous apparel from your body so that you can conceal yourself under the disposable raiment of the abbreviated garment suspended on the back of the door," he means "Take your clothes off and get into that paper gown—the one that looks like a cocktail napkin."
Given that, I talked with Dr. Martin J. Murphy, Jr., director of the Hippie Cancer Research Center in Kettering, Ohio. In an interview that appears later in this book, I asked if he were explaining cancer to a child, what would he say?
Remember, English comes hard. He speaks fluent Medicalese.
"Cancer is a disease of the cells. The body is made up of cells and a cell is something so small we have to use a powerful microscope in order to see it, but even then we can't see all the things that make up a cell.
"Each of these cells is like a little world in itself.
It has its own driving force, it has its own identity. Some cells make hair, some cells make skin. So there are different cells in the body and each of them has its own little program. By putting all these cells together, it's now a community that participates for the good of the whole community or you the person, you the child.
"Something may have gone amiss or astray—we don't always know the reason for it. We know there are certain things that can cause an insult to a cell. It's insulted in that it does not die, but it changes. It changes the cell into a one-way street. It's irrevocable. It's a one-way direction. And that's called 'differentiation.' It's a big word and just means that the cells became different, that's all.
"And now the cell divides in a very special and strange way and a very dangerous way because we've got to stop it from dividing because if it continues to divide it's going to impact. That means it's going to invade the surrounding cells. Now, it doesn't gobble... cancer cells don't go around eating each other. Please get rid of that. What happens is that they crowd out... they literally displace all the surrounding normal neighboring cells that are trying to do their jobs.
"And if it's in the bone marrow, which is where the blood cells are produced... then we're going to find out that Johnny or Judy is sick because they're gonna have infections, they're gonna have colds and all of those things that we get when our blood is thick as a result of the lack of normal cells.
"It's those malignant cells that just keep dividing and dividing. We've got to stop them from invading, first of all, and stop them from spreading. We put boundaries on them, get 'em corralled as it were, stop them so the disease does not spread, then we concentrate on removing them, in this case with chemotherapy; killing those that are there until the last one is dead and when that happens, you'll be cured and you'll never again be confronted with that disease of that particular type."
Can you catch cancer?
"You'll catch a broken leg sooner than you'll catch cancer.
"Cancer is not communicable. We're not gonna catch it. Cancer cells are not transmittable. That's a fact. But what we can catch is a love of life from each other and that is what we gotta do when the diagnosis is made in a friend. Call that person immediately and say 'I don't know what to say,' but call them. Do not say 'Well, I don't know what to say,' and therefore we closet... we cocoon because we are afraid of saying the wrong thing or not saying enough. What we end up is not doing anything.
"And if we can break down this myth—the myth, in fact, the error, of the alleged transmittability of the disease, break that down and then say, 'All right, it's not transmittable, what do I fear from it? Nothing.' What I have therefore is an opportunity to share my strength, my hope, my affection for that person."
And if you're a child explaining cancer to an adult, Jeff, a thirteen-year-old from Sedalia, Missouri, has a shorter, more visual version.
"My theory on leukemia is as follows.
"Just think of it as a factory of lights. Red lights stand for red blood cells, white blood cells are represented with white lights, and yellow lights are representing platelet cells.
"The lights go down the assembly line. Every once in awhile a light blows out because of a short in the wiring all the lights are hooked up to. So, the repairman is called up. His name is Chemotherapy. He goes through the wiring and repairs the short.
"After repairing the short, he goes through and looks for blown-out bulbs and lights. After finding the blown-out lights he replaces them. He waits .around and make [sic] sure no more lights blow out. Then after all the work, he calls it a cure or a job well done.
"P.S. I think my lights are all burning and I hope I don't have any more blow-outs."
Most young patients reduce it to simpler terms than that. They call what they've got simply a "war."
Susan, of Tuscaloosa, Alabama, had liver cancer. She was left with a number of large scars on her stomach and right side. One day at kindergarten, several of her friends saw the scars and asked where she got them. She said, "Oh, I was wounded in the war," and then added, "and what a war it was."
In their minds, it's a real war. It goes beyond the daily chant, "What am I doing here?" It brings with it the loneliness of being cut off from friends, the risks and danger that each day brings for their survival, and the inevitable prayer, "When can I go home and pick up my life as it was?"
It doesn't really matter to them what the enemy looks like. They only know it has chosen them to attack.
As in a real conflict, there is a chain of command. There are the noncommissioned foot soldiers: Mom, who is in charge of KP and transportation; Dad, in charge of procurement and budget; brothers, sisters, and grandparents, who provide entertainment, do errands, and sit beside them in the trenches.
There are the "professionals" who make up the officers' staff. This includes nurses, therapists, social workers, support groups, camp directors, and heads of foundations that make wishes come true.
The generals are the doctors. They call all the shots in the campaign. They give orders that are to be obeyed without question. They assign duty that is tough at best. They send their troops into combat knowing there will be wounds, pain, and casualties. They grant them "leave" from the hospital one minute and take it back the next.
The general is the target for whatever good or bad that happens in this w
ar. He didn't start it, he may hate it as much as his army, but he has the responsibility for getting his troops home—alive.
A teenager with cancer said that a friend of his who had been a Marine during three wars was asked how he could face fear for his own life for so many years and he replied, "I got to know the enemy well."
That's a problem in the cancer war. No one really knows it well—not even the generals. They just hit it with every weapon they've got and try to better the odds with each skirmish.
For whatever doctors are or are not, in the heat of the battle, they become the most important person in the life of a cancer patient.
I made plans to talk with one of the generals, Dr. Michael Amylon, who was on a two-week "maneuver" at Camp Okizu near Sacramento, California.
5
The General
Her green eyes were intense as she took a Rubik's cube out of her purse. "After the doctor looks me over, I'm going to give him this cube. If he can work it, then he can work on me."
Lisa, age 12
Alpena, Michigan
The two-hour drive from the Sacramento airport to Camp Okizu gave me time to think.
I thought about Crystal of Grass Valley, California, who at age three had the perception to observe hospital procedure and said, "These people don't know what they're doing. They put blood in me one day and take it out another."
I thought about Becky, Tigard, Oregon, whose account of her doctor bristled with defiance. "He said I would never be able to walk again because I had such a small stump, but I did. I proved him wrong! I did walk again. He was really happy I had the nerve to do something brave and hard like that."
There was the pint-sized patient who sat on the examination table popping jelly beans and gazing forlornly at a dead plant on the doctor's windowsill. Her observation: "I hope he's better at taking care of people than he is his plants."
I thought about the letters that described their doctors as cold and inaccessible, and the crayon drawings where the kids fantasized about sticking a needle the size of a Masai spear into their doctors' backsides as revenge. I remembered the boy who advised, "If you happen to get a doctor who is snotty or doesn't want to answer your questions, change doctors!"
But there were other letters. Letters of unabashed love. Like Jason, Phoenix, Arizona, who wrote, "My doctor is a real cool dude. He calls me 'Squirrel Brains' but I knows he feels real bad sometimes."
Or the picture of a flowery heart drawn by Jessica, age six, who wrote, "Dr. Reynolds love me and I love him."
Maybe this kind of ambivalence goes with the command. Maybe doctors have to protect themselves behind a wall of aloofness and dispassion in order to survive.
I turned at the footbridge, and after a five-minute drive through tall pines and rows of cabins at Camp Okizu, I climbed to the top of the hill where Dr. Michael Amylon was quartered. It was a small room with a table, a couple of folding chairs, and a screen door that traffic never allowed to close.
He didn't look much like a general or, for that matter, like a repairman for cancer lights that short-circuited. Tall, lean, thirtyish, and dressed in faded leans, he looked more like an ad for a soft drink.
This pediatric oncologist, who practices out of Stanford University Children's Hospital at Palo Alto, California, was readying for a mission. In a few minutes, he would hike down to the river and fish and canoe with a group of campers. Outside of a few cuts and mosquito bites, few of the campers would require his services as a doctor.
These kids weren't cancer patients. They just lived with a brother or sister who was. It was the first day of camp for "cancer siblings." They had already unpacked the usual array of shorts, T-shirts, underwear, rain gear, plus an unlimited supply of guilt, jealousy, and confused feelings.
I wondered what kind of emotional baggage Dr. Mike carried with him.
A native of New England, he went into oncology at Stanford because he liked the idea of a close relationship with a patient and the family over a long period of time.
He paid a big price for this relationship:
"A common defense mechanism," he explained, "is to create a kind of emotional distance. Some doctors don't allow themselves to feel. It's too hard. There needs to be enough doctors and enough nurses to take care of the kids and if some of them need to build a wall around themselves in order to continue doing that, then maybe it's okay. But I don't think that's really fair. I don't know how long I'll be able to continue, but I think that the family— the child especially—needs to be able to see you as a person during the hard times because the support that they need is more than just technical. I try real hard to be an accessible person.
"The kids have to know that I care about them and that I give them permission to be kids and I give their parents’ permission to let them be kids. I want them to be in school as much of the time as possible. I want them to be able to come to camp and show themselves they can still laugh and play and have fun.
"Kids are not supposed to be sick and they're not supposed to die. So I'm gonna do everything that I can to allow them to be children while they're going through this. Most of the kids are gonna get cured and you have to hang on to that or you couldn't survive in this field."
Do you cry a lot?
"A lot," he said flatly.
Dr. Mike had defied the first rule of a military engagement, the rule that says "Build a defense to protect your position. Have something between you and the enemy." Without a wall, he is vulnerable.
"I didn't fully appreciate how attached you really do get to the kids and how hard it is when... I thought I would be able to... but I still believe that it's important to let them have access to me as person as well as a doctor. But I didn't think it would hurt so much."
Here was a doctor who treated children forty-eight weeks of the year. Another two weeks he volunteered at Camp Okizu for cancer patients. The remaining two weeks of the year he volunteered at Camp Okizu for the siblings.
I felt guilty somehow, asking him to defend the criticism that doctors seem "too busy" to talk:
"Parents will have questions and things that are bothering them that they don't ask because they perceive that we're too busy," he said, "and they don't think it's important. Well, we ARE that busy and there's always a lot going on. My attitude relaxes a lot when they go into remission and things are going well. But the parents are still very worried and I have to always try to keep that in mind.
"The parents are very protective of me as well as I try to be of them sometimes and they feel guilty jealousies they have is about the friends that their ill sibling has at the hospital—a favorite nurse, a favorite doctor, all these people that they talk about all the time. And for the sibling to be able to go home and say they know Dr. Mike too is really important. I can carry them up the hill on my back and give them a story to tell."
As he prepared to leave, he added how the battleground of cancer was mined with surprises, some good, some bad. He smiled when he talked about their dark humor that never failed to astound him and that few adults understand. I told him about seven-year-old Douglas who said he wanted to write a book on cancer entitled, "Tha... Tha... That's 'All' Folks." He got the idea from the Looney Tunes cartoon.
Dr. Amylon shook his head. "I'm probably not the fastest wit on the block, but I do a lot of joking with the kids and they respond well to it. It makes them feel safer. If you can't laugh at yourself, who can you laugh at?
"They make terrible jokes," he continued. "Amputees carry their legs over their shoulders. They're riding down the freeway and they see somebody in another car looking at them and they lift up their wig. I think it's healthy."
6
The Chemo Cut
When three-year-old Carrie's blond curls were all gone and little fuzz was starting to grow back, she observed with curiosity her father's balding head as he bent over to tie her shoe. "Daddy, " she asked, "is your hair coming or going?'"
Carrie's mother
Williamstown, Maine
Let's be honest here. The Chemo Cut is the pits!
It gives new meaning to the term "premature baldness." We're not talking E.T. here, who had a planet to go home to where everyone is hairless and has sixteen-inch fingers. We're talking about THIS planet where kids dedicate their lives to their hair.
I once figured out the hair of a teenager cost parents a nondeductible three thousand dollars a year. By the time you factor in the cost of shampoo, conditioner, bleach, crème rinse, mousse, gel, permanents, haircuts, styling wands, hair spray, curlers, color, ribbons, ornaments, and their own personal water heater, we could have bought our own nuclear power plant to pay for the electricity to run the hair dryer. Hair is that important. To use the worst pun in the free world, it is the "mane of their existence."
You're going to read a lot about courage in this book, but I am serious when I tell you that no courage is greater than that described on the pages of this chapter.
To many children of cancer, the loss of hair through chemo treatment is the final blow of indignity, the last layer of veneer that is stripped away leaving them naked and vulnerable to society. They have lost their place in a world where peer pressure lets you in... or keeps you out.
Tommy, a four-year-old from Buffalo, New York, experienced a phenomenon we'll call "reverse peer pressure."
Tommy's mother spent days preparing her son for his inevitable loss of hair. Every time he'd yell "I need my hair!" she'd yell back "What for?" Finally, she convinced him he could go on breathing without it. He resigned himself to it and sat back to wait for the big chunks of hair that cling to the pillow at night or hug the drain on the shower floor. The day never came.