A Master of the Wired World?

I just got my author's copies of a new book from Financial Times Management (London), MASTERS OF THE WIRED WORLD: Cyberspace Speaks Out.

What's remarkable is that this collection of manifestos about the new age a'dawning contains proclamations by Tony Blair, Al Gore, Charles Handy, Nicholas Negroponte, Arthur C. Clarke, Alvin Toffler ... and me.

Anne C. Leer, editor

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The Guilty Victim

One issue is the tumor itself -- is it you, or is it "other"? We look at various metaphors people have advanced for tumors, including "crazy tissue," the metaphor this book takes its name from. What caused the tumor? We examine the anthropological origins of the homunculus, and the horrifying dermoid cyst -- the unwanted visitor that takes up residence inside us.

I never had a scientific bent of mind, and my tumor has not succeeded in bending it so that it is more scientific.

When someone tries to explain some complex interaction involving long Greco-Latin names, I want to ask them, "So what is it like? Tell it to me as if it were a story."

The word hemangiopericytoma seems to me to have been invented less to reveal than to occlude. Even with it I want to learn what the Greek roots mean (blood + -- maybe there is a clue from ancient mythology why these things show up in our heads, some god we unwittingly crossed, or an atonement we might yet be able to reverse-engineer.

I want to know how Walt Disney would have explained the tumor, and I want to see it happen in stop-gap animation, like Disney's famous flower sprouting, blossoming, bearing fruit, and withering away.

I want to shine a spotlight around the explanation with my mind's eye, like a recipe for soup with the story of that soup's creation, or a New Yorker cartoon stuck to a refrigerator with a magnet, or a bedtime story that never ends, but each night shoves my tentative little boat into a different sea.

People tell me I am anthropomorphic. I agree. To me, saying things in a human way, in a way that humans can understand, is what humans are best at. Indeed, it is the only thing we are naturally good at.

If you look up tumor in a medical reference work, it will tell you that a tumor is undifferentiated tissue that grows erratically and often very rapidly.

I want to know what that means. And I want to know more, besides.

I put out a call to correspondents. "Has anyone on the listserver who has had a craniotomy actually seen their tumor? What was it like? What is it made of? Was it hard, soft, rubbery, what? Was it the same color as brain?"

The best response I got was from Judy:

That was great but I still had many questions. I wanted to know if a brain tumor could possibly be a new kind of organ, with a function we don't understand yet. Can it live so close to our minds and souls and have no mind, no soul? Can it see itself? Are we wasting our time getting angry with it?

Sometimes a tumor is not new tissue, but existing tissue that goes bad. This is the worst, most unexcisable tumor, because to remove the tumor is to remove the organ it used to be. It is a pancreas or liver that no longer does what a pancreas or liver is supposed to do. And you still need a pancreas or liver.

More often a tumor is new tissue, a handful of cells that take outside an organ, but eventually compromise it. Soon it brushes up against vital organs and, by competing for bodily resources, shuts it down, the way a weed steals water from its neighbor. There goes the neighborhood.

Brain tumors make bad neighbors because they tend to affect whatever is around them. Like dogs in the manger, they obstruct functions they can't themselves perform. Like vandals placing pennies on train tracks, they delight in seeing what they can do to bring down the established order.

Discovering you have a brain tumor is like being alone on a subway car, and suddenly there is another passenger there, someone rowdy and undisciplined who makes you immediately uncomfortable, and then more uncomfortable as he comes and sits next to you, and then more uncomfortable as he puts his knife to your throat and smiles.

But a brain tumor is not just one sociopath. It is a whole gang of these motherless, fatherless children, delinquents neither educable nor socializable, that who band together to improvise a life of recklessness. Their pursuit of freedom inevitably encroaches on ours. Their swinging fist inevitably finds our nose. They are incredibly American.

Researchers have identified two enzymatic reactions that take place in every normal cell, as parts of its natural clock. The first reaction limits the speed of growth by size and the other limits the growth by number. These are the checks and balances that keep a cell sane and purposeful, a part of the cell community, which is really the civilization of the body.

A tumor is tissues whose cells have cast aside these two reactions. It is like a car in a movie that has had its brakelines cut, and speeds helplessly up and down the hills of San Francisco. The quicker the chaos, the more cancerous the tumor. An astrocytoma expands to fill any empty space, shooting arms out to invade and occupy. Because it assumes a shape we assume it has a specific function, like an organ. But it has no objective except growing.

A brain tumor is not a new brain trying to compete with or replace the old one. It is an infuriating reality that the new tissue, so purposeless and unaware, is more vital than that delicate and complex part of you that, if it is not your soul, is your soul's tabernacle.

Ridding yourself of the gang is one of the most challenging problems in medicine. If you cut up a chicken and throw away the giblets, new giblets do not grow back on the chicken. But with a living body, the giblets do want to come back, because the only instructions they need to follow in order to survive is to keep growing. All you need to replicate is a single cell, following surgery or radiation, or chemical therapy.

And it seems there is always a remaining cell. After all the suffering and apprehension and recovery, you take a new scan, or a new blood test, it is the commonest thing in the world to discover the tumor is growing again. I have spoken to meningioma patients who have had eight craniotomies to remove eight meningiomas. They keep coming back.

Hail, hail, the gang's all here.

Then there is the issue of cause. No one knows exactly what causes brain tumors. People suspect genetic damage, immune deficiencies, diet, chemicals, and hormones. A guilty fascination of brain tumor people is to lie awake and envision the exact moment that something went wrong - when the first cell went south inside them, and decided to mutate to a different drummer.

I can think of so many possible causes. "Everyone knows" a food ingredient like aspartame is safe and natural, but everyone also knows stories of other safe and natural ingredients that were found to cause problems - MSG, saccharine, cyclamates, ordinary table salt.

I have lived most of my life in the city. The city is so full of health factors, we'll never be able to unscramble them and conduct tests - air pollution, crowdedness, chemicals, noise, greenhouse gases.

Then there are X-factors - things no one has thought of, which future generations will slap themselves on the foreheads for, and say, "What were they thinking?" Maybe newspapers cause tumors. Worcestershire sauce.

We want it to be something we already despise, like cigarettes and bus exhaust. If it is something we dearly love, like cold beer and buttered popcorn, we're going to have tumors sprouting everywhere, and everyone hunching their shoulders in denial.

I think about how Dick's tumor got started. He had no family history of brain tumors. But Dick was a trucker and excavator. His trucks required huge tanks to be buried on our property, for pumping gasoline, diesel fuel and kerosene. His clients included Ohio Edison and numerous environmental waste companies. We sometimes speculated that Dick, good, tough, thoughtless guy that he was, might happily agree to burying barrels of toxic waste on the property, barrels that could leak, fumes that could, over a period of decades, make their way into his sleeping skull.

Ohio Edison, of course, is the electric company. Dick built rough roads between power pylons, so that maintenance crews could service the power lines. He must have spent thousands of hours on those roads himself, within range of the crackling cable.

Is there an analog to these power lines in my life? Did both Dick and I, not related by blood or by geography or lifestyle, expose ourselves to a similar risk?

Yes. Electromagnetic fields occur both under power lines and on desktops. They shoot out of computer monitors and office systems like buckshot from a gun.

That they emit radiation is not in doubt. The technical name for a monitor, which is the same thing as a TV, is cathode ray tube. The rays are quite benign in the exposures people experienced for the last 100,000 years. But when you bathe in them day after day, for half a lifetime, they way we do these days -- who knows?

This is why moms tell their kids not to sit so close to the TV. Their young tissues, matched against the constant bombardment of rays, may be no match at all. The number of kids with brain tumors, particularly high-risk malignant tumors, is at an all-time high.

The modern office is a major source of electromagnetic fields. Besides monitors, fields are generated by printers, fax machines, uninterruptible power supplies, and power cables. Working in an office is like living under a power line.

It's even present in the body of your cell phone when you put it up against your ear -- right where my tumor is growing, incidentally. Gives new meaning to the phrase cell phone.

I find this all very ironic, because Dick always hated computers, and I always hated excavating - but each pastime may have brought us closer to our fates.

Dick would always tell me, "Those things are going to wreck everything. They're no damn good." I thought at the time he was referring to automation, computers putting working people out of jobs. Now I think he was objecting in a cultural way - computers subtly robbing people of useful, unique, old-fashioned skills, and forcing one-size-fits-all skills onto us instead - like how to use Windows. I don't think he had any insight into health risks. He may simply have hated being left behind - he was dyslexic, and knew there was no place for him in the putty-colored world.

I was an early adopter of personal computers and the home office. Though I really couldn't afford one, I was up and running way back in 1982, with a very clunky Apple II machine.

As the PC revolution took hold, I became a chronicler of the changes. I even wrote, back in 1986, a handful of not especially seminal articles about radiation health.