Copyright (c) 2000 by Michael Finley

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

The week of my diagnosis, I had an afternoon dream, and it perfectly summed up the eerie discomfort of having something up there. I dreamed I was alone on a subway car, and suddenly there was another passenger in the car with me -- a strange person who I knew instinctively would not listen to reason. He was like the motherless child of a motherless child -- instinctual, cruel, and beyond communicating with. There was no hint of feeling in his eyes, no possibility of pity. Yet he advances toward you in the moving car, chains jangling, and proceeds to sit right next to you, pushing you 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, banded together to improvise a life of recklessness inside you. Their pursuit of freedom inevitably encroaches on yours. Their swinging fist inevitably finds your nose. Tumors are incredibly American.

They are you, and yet they are not you. Normal cells have a purposeful DNA map. Tumor cells are cells that have lost the 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

It 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 chrism the length of the curtain.

It's not the worst thing in the world to have a brain tumor, by far. 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 is diagnosed with a brain tumor. As scanning technologies and early detection improve, that number will go up. Indeed, it is said that autopsies of all persons 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 in the tabernacle, and quietly making plans.

Every year 150,000 people in the U.S. die from brain tumors. About 120,000 are diagnosed with them per year. 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. 

Primary brain tumors can be benign, which mostly means slow-growing; or they can be malignant, which means fast-growing. But be very careful with these words, as benign tumors are no slouches at causing catastrophic harm and even death. The malignant group is generally considered 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.

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 most common primary tumor being a dead heat between gliomas, which are often very malignant, meningiomas like mine, which are usually benign.

A tumor can be benign by type, but malignant by location.

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. My stepfather Dick had a big astrocytoma, like a long-armed starfish that insinuated itself through delicate brain flesh. When his 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, like what I have, affect the lining around the brain. They can be among the most operable, slowest-growing brain tumors. A problem for patients diagnosed with meningiomas is that, while the news is unbearable for you, the neurosurgeon may actually seem to be relieved. Brain tumor surgeons spend a part of every day in hell; they know there are worst beasties between people's ears than meningiomas.

Having said that, meningiomas are no day at the beach. A few 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. Some are inoperable. Even those that are operable are 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 far from a death sentence, neither is it something you will ever be able to ignore. Visit the online chatrooms for meningioma victims (I hate that word, but there isn’t a better one) and you will be chagrined at the bitterness of many there who laughed at their diagnosis, only to discover that it ruined their careers, broke up marriages, and wrecked lives.

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 + 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 want to see how Walt Disney would have explained the tumor, in stopgap animation, like the 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.

I hold up the X-rays and scans to the light sometimes. What I see is a little curlicue, inside my left ear -- like the stub of a pencil, like you might place over your ear, only this is inside.

From another angle it looks like a pastry cuff, nautilus-shaped, and twirled at the end.

 

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.

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 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.

 

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.

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. 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 have spoken to meningioma patients who have had eight craniotomies to remove eight meningiomas. The little bastards keep coming back.