by Michael Finley
Copyright © 2001 by Michael Finley

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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.

To order, click here. Discounted price is $18.87 from Amazon.

The Thing Inside

The idea of having an intruder inside me takes some getting used to. We are all trained by nature to throw off attackers. But how does one throw off something that attacks from within?

I have an afternoon dream, and it perfectly sums up the eerie discomfort of having something up there. In the dream I am alone on a subway car, and suddenly there is another passenger in the car with me -- a strange person who I know instinctively will not listen to reason. He is like the motherless child of a motherless child -- instinctual, cruel, and beyond communicating with. There is no hint of feeling in his eyes, no possibility of pity. Yet he advances toward me in the moving car, chains jangling, and proceeds to sit right next to me, pushing me forcibly against the wall.

That's what a tumor is, an unmannerly guest. Or guests. Usually you fight not one discreet lump of enmity, but a swarm of them. Cut out every cell but one, and that one cell may multiply and fill you up all over again. Like a gang of gangs, neither educable nor socializable, they band together to improvise a life of recklessness inside you.

Tumors are ugly Americans. Insensitive and brutal, they muscle their way in whatever direction they wish. Their pursuit of freedom inevitably encroaches on yours. Their swinging fist inevitably finds your nose.

They are you, and yet they are not you. Normal cells have a purposeful DNA map. Tumor cells are cells that have lost their map. They replicate not as brain but as callus. Brain knows when to stop growing; callus does not. It is stupid as meat, but it edges out the pulsing angel that is your mind.

Consider what the human brain is, in the context of all nature. It is the only instance we know of in the universe of atoms and molecules organizing themselves to think and speak. It is breathtaking: chemistry that can say the word chemistry, tissue that is conscious, self-diagnosing and self-correcting.

So a tumor is like having the devil living right there in the tabernacle, and knowing it wants eventually to raid the holy of holies, scatter the host, and splash the wine and anointing oil the length of the curtain.

It's not the worst thing in the world to have a brain tumor. There are far more killing and more painful diseases and conditions. But for sheer intimacy, nothing can compare to having a parasite living in your brain.

It's not uncommon. Every year a quarter of a percent of the population -- 120,000 people -- is diagnosed with a brain tumor. Of that number, slightly less than a third are primary tumors -- tumors that originate in the brain. The remaining 70%, or 80,000, traveled to the brain from cancers elsewhere in the body; these are called metastatic or secondary tumors.

As scanning technologies and early detection improve, that number will go up. Indeed, as said before, autopsies commonly reveal the presence of one or more tumors growing in the brain. They did not cause death. The person who had them had no idea they were there. But they were there, taking up residence and quietly making plans. However, 150,000 people in the U.S. die from these tumors every year.

Primary brain tumors can be benign, which mostly means slow-growing; or they can be malignant, which means fast-growing. But be careful with these words, as benign tumors are no slouches at wreaking havoc and causing death. The malignant group is worse because the speed of the advance makes treatment more difficult. But "so-called benign tumors" -- if you have one, you always want to describe them this way -- have cut a bloody swath through thousands of families.

To make the taxonomy even more difficult, a tumor can be benign by type but malignant by location. Growing slowly is nice, but if it is in a place that a scalpel cannot reach, and radiation cannot go, it will kill you -- benignly -- over time.

Generally speaking, it is better to have a primary brain tumor, like I have, than a secondary or metastatic brain tumor, because patients with metastatic tumors have cancer both above and below the neck, and because metastatic tumors pop up not singly, in an operable area, but in clusters that can be located almost anywhere. By the time these tumors show up in the brain, the problem can already be life-threatening.

The split between malignant and benign primary tumors is about 50/50, with the most common primary tumor being a dead heat between gliomas, which are often very malignant, and meningiomas like mine, which are usually benign.

Gliomas are tumors that grow in the supportive tissue of the brain, also known as glial or neuroglial tissue. There are many kinds of gliomas, with names like astrocytoma, ependymoma, and oligodendroglioma. Gliomas are not necessarily killers, but to be told you have one is a call to battle. When my stepfather's surgeon opened him up and saw the characteristic shape and inextricable involvement in the tissue of the brain, he knew it was over for Dick.

Benign meningiomas affect the meninges, a kind of soft veil shrouding the brain. They can be among the most operable, slowest-growing brain tumors. Despite it being benign, people with a meningioma have only a 60% chance of surviving five years. A communication snafu almost always occurs when a doctor informs a patient he or she has a meningioma. The patient has just received terrible news, but the surgeon may seem almost cheerful. This is because meningiomas, as nasty as they can be, pale compared to other tumor diagnoses.

Having said that, meningiomas are no day at the beach. Some are cancerous. Many of them, while being located on the outer perimeter of the brain, nevertheless apply pressure on delicate structures and cause intense headaches, blindness, mental illness, and a hundred different kinds of seizures. Many are inoperable. Even those that are operable can be tricky. It is not unusual to have meningioma surgery that successfully removes the tumor, but leaves the patient epileptic for life. While a meningioma is not a death sentence, neither is it something you will ever be able to ignore.

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 wanted to know what that means. And I wanted to know more, besides. So early in my diagnosis 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 a woman named Judy:

Dear Michael, I looked at my pathology report from my first surgery and it describes the tumor as "peaches-to-cream-colored." It also says there was some brain cells (gray) included. They said it was soft tissue in one of the slides, so I wouldn't think it was all that hard.

The exact wording of the pathologist is "the sections show a neoplasm composed of plump spindle cells arranged in a fascicular and whorled pattern. The individual cells are mostly bland but rare scattered enlarged cells with large nuclei are present. There are scattered chronic inflammatory cells sprinkled throughout the tumor and small areas of foamy macrophage are also present. The tumor focally penetrates into dural fibrovascular tissue. Pieces of brain tissue are present.”

Another description from my neurosurgeon says "it consists of multiple irregular fragments of white to tan soft tissue. Also present is a strip of gray membranous fibrous-appearing tissue. Sections from the apparent dura are also there.”

In other words, tumors may be very colorful.

Peaches and cream!

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.

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 of gangs 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. There is no distinct "edge" to a tumor, as an eyeball or a lung has. All tumors blur into the body. That is why surgeons who say "We think we got it all" are whistling in the wind. To get it all, you have to cut into the good stuff.

Even then, 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, or another tumor has popped up in a different location -- a worse location.

I never have had a scientific bent of mind, and my tumor has not succeeded in bending it so that it is more scientific. So 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 + vessel + epithelium + tumor). Maybe there is a clue from ancient mythology why these things show up in our heads, some god we unwittingly crossed, some atonement we might yet be able to reverse-engineer.

I had conceptions about my tumor and I wanted to explore more deeply. For several weeks I entertained the notion that a brain tumor possibly be a new kind of organ, one whose function we don’t yet understand. Maybe if we learned the function, it wouldn’t kill us. How possible was it, I thought, that a tumor could live so close to our minds and souls and be of nearly the same substance as them and have no mind, no soul? Can we reason with it? When we think about it, is it thinking about us?

I want to see how Walt Disney would have explained the tumor, in stopgap animation, like the famous footage of the 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, I am. 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.

At one point I ask friends to suggest names for the tumor. I figure giving it a name will make it seem less odious -- and perhaps give some folks a fresh way to think about my situation.

Their suggestions range from the cute to the profound. My daughter suggested Balthasar, because it sounds like a tumor to her.

My friend Kassandra in Ohio suggested Hertz ("my strife") and Doyle ("dark foreigner").

Al, in Indiana thinks we should name it Rodman, after Dennis. "The Worm," as many know him, is unpleasant, causes grief, and is bothersome. But deep down, he says Rodman is benign, and so should my tumor be.

My buddy Mark wants to call it Bob, as in H.R. "Bob" Giger -- I think that is the guy in the movie Alien who has the creature burst from his chest.

On the other hand, my friend Bob in Saint Paul voted for Charlie the Tumor.

Cyli, a BBSing friend, nominated Swirly and Squiggy, on the basis of the photograph I posted from the MRI.

Audrey in Tulsa thought Rocky was a good name, given the tumor's calcification.

A classics professor in Sacramento suggested Tumult, from the Latin tumere, to swell.

My buddy Ray in Singapore, a performance artist, felt the tumor needed a T name: Tammy, Tippy, Topsy, Tilly, Talmud, Twain, Tolstoi, or Tuff-nut. He also came up with Ricky, which connects either to I Love Lucy or "Ricky Don't Lose that Tumor."

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