I told y’all I was working on a ten-page, 3000-word personal experience essay to send off to the Writers’ League of Texas contest . . . didn’t I? The winner gets to go to the conference and not be mocked. But I thought I’d polish this up and send it, anyway. It’s an illness memoir based on the one that I did for the University of Oklahoma Medical School literary magazine.
If you feel like reading it over and making a few comments, the essay follows, mostly behind an LJ cut. But I thought it might be fun to inflict the opening on you, anyhow.
THE ZAP PALACE
They say this is a safe haven for healing, a sanctuary just like home. If you live at 13 Chernobyl Place.
Radiation Therapy 3 is where they do all the “head cases.” It is to be “my” machine.
When they arrange me on that moving steel table, they say, “Just be calm and hold still.” But they’ll be leaving this vault; they’ll walk up the ramp and outside the several-feet-of-concrete walls and to the other side of that lead door that goes “boom” when it closes, and I’ll be in here alone.
With my head in the mouth of the dragon.
Did you know that those CAUTION RADIATION AREA signs on the doors that lead into the treatment zone are required by law? Notices must be placed on any doors opening into areas exposing personnel to five or more millirads per hour. I worry about the nurses, techs, and doctors in 20 years.
The big yellow-orange radiation symbols scare everybody who walks into the Cancer Center, especially the patients. Even those of us, like me, who don’t have cancer, but have one of the benign conditions that can be best treated with radiation. This is all explained in the booklets they give you at the Radiation Therapy center.
Of course I don’t call it that. I call it the Zap Palace.
# # #
Steroids make my face puff out. I look like Miss Piggy, only not nearly as pretty.
The skin on my forehead feels mushy-crunchy to the touch, like a Styrofoam packing peanut. I tell my nurse when she asks that yes, my scalp and head feel funny. Sometimes I get weird pains, but mostly it’s a surface tingle; frankly, it itches like bugs crawling around. I know this because once, several of us in my church came back from a mission trip with passengers . . . head lice. We all used shampoo with Lindane, leaving it on our heads for several minutes. I can’t help wondering whether this caused or aggravated my condition. Alternatively, I theorize that a benign pituitary adenoma might’ve been caused by the hexachlorophene in the pHisohex I bathed in as a child to treat bladder infections, because a few years ago the FDA banned the chemical for causing “brain lesions,” if I remember the news reports correctly. What does it matter? All that matters now is to get rid of it.
I go in for radiation at 10 every morning for the next five weeks, weekends off. There are to be 25 treatments of around 180 rads, which is the safe level according to whatever it’s according to.
Last week, I helped with an art project: my mask. It’s a synthetic grid-screen shaped to your face, made of quick-hardening plastic attached to a steel base. The first few times they strapped on the mask and bolted it to the table, with my nose firmly squashed against the grid, I had an asthma attack. “Hold still! Be brave,” urged the well-meaning technician during this simulation. The first time they turned on the positioning laser, I felt as if Scotty were beaming me up. It’s the brightest light in the mortal world.
Now it’s time for me to meet that huge friendly dragon.
All I can do is lie there and pray.
A few years ago, a malfunction of one model of a similar dragon-machine caused at least six patients to die from accidental massive overdoses. It was a software glitch; one patient received two doses of 20,000 rads (“radiation absorbed doses.”) Doses of 500 to 1,000 rads can be fatal.
It’s all I can think about, this fear that a glitch might happen, or that the beam is pointing just south of the proper tissue, that it’ll kill the wrong tissue. This is going to the center of my head, after all–my brain, where I live. I asked my surgeon whether radiation wouldn’t kill brain cells, and he joked, “Only the weak ones!” But then it wasn’t his brain in the line of fire.
# # #
I can’t see to drive (because the problem affects my vision), and besides I’m in no condition mentally to navigate the Dallas freeways. My elderly mother volunteers to drive me, starting Monday. They’ve changed my “treatment plan” several times, trying to figure out how to get the best shot at the sneaky underside of my pituitary gland. The usual “ports” at the temples and in front of the ears reach the top and middle of the gland’s lobes, but don’t really concentrate on the anterior lobe. Dr. Goldwell has prescribed the “flying wedge,” where the beam of alpha particles shoots through your “thinking parts,” but they reassure me it delivers a smaller dose to each of the locations through which it rotates.
The first day of treatments, I balk. The headrest that my simulation tech assured me was “mine” is missing. They substitute a smaller one, but I refuse. In simulation, they had directed the beam to an area smaller than an English pea, and I can’t risk having the beam be “off,” too close to my optic nerve. Before they can stop me, I jerk open the drawer behind the wall where the other tech had stashed “my” headrest. It’s empty.
Everyone tells me I’m crazy and I’d better settle down and start treatments. Others are waiting, and there’s a tight schedule. Prayer would have to suffice to bend the beam.
The next day yet another tech sets down the same headrest, and I realized that the day before, it had been UPSIDE DOWN. That was why it’d been so apparent that it was inches lower and oddly tilted.
The lasting effect is that I develop a variable blind spot in the lower left quadrant of my left eye. I rant to my poor long-suffering family: “Bastards. I told them that headrest was wrong. I should’ve walked out, but they insisted I was just hysterical. One day of waiting wouldn’t have mattered.”
The blind spot is there when I’m tired and when I first wake up. It sometimes manifests as “branches” of a white light or as brief Morse-code type flashes over some part of my visual field.
The asthma attacks I had the first three times inside the “vault” have gotten milder, and I’m hoping I won’t feel freaked out at all by next week, when the hair loss and fatigue set in. Dr. Goldwell is balding, with the traditional “horseshoe haircut,” and he just laughs when I express concern about having a nude “headband.” He calls it a sideways Mohawk. What’s important is that my head doesn’t fall off.
# # #
One morning as I wait, dizzy, in the staging area just outside “my” machine, the previous patient staggers out and starts vomiting into the trash can next to the water cooler. Everyone from patients to medical staff acts as though this is perfectly normal.
There’s a little blond boy here who can’t be more than five years old. I pray that he and his grandmother have come to support someone else, but then I see the purple X inked on his Adam’s apple.
He has a twin sister at home and five other siblings under twelve. He says the worst part for him is that he’s so lonesome; he misses his twin. But he’s enjoying the Ronald McDonald house. He’s never been in such a big city.
He’s so brave. I, on the other hand, am a chickenshit coward.
I’m a terrible patient.
# # #
I have radiation sickness.
Not as in ground-zero, of course. Mild. The only foods that don’t make me hurl are saltine crackers and 7-Up. It’s not as though they’re going to run the Geiger counter over me like in “Project X From Outer Space,” and say, “She’s full of crickets,” but it’s upsetting.
It’s all upsetting. When you’re on the table with your head strapped in, and the voice on the speaker says, “Keep your chin pointed up, now . . . don’t move . . . here we go,” and the lead door locks shut, you and God are in there alone.
The overhead lights go off and the dragon begins to hum.
So you just lie there and whisper prayers, telling the Lord how thankful you are that He’s in control, and that you trust Him to guide that beam where He wants it to go, only to any “bad” places and cells, and protecting your optic nerve(s) and brain parts. You squeeze your eyes closed and murmur Psalm 146 as you feel your lower half floating up off the table towards the ceiling as the bright beam crosses your face. But it’s your astral body, not your physical body, that moves. You tense your leg muscles so as not to fall off the table, and you trust that the dose went to the proper site.
Then the ambient light comes back on, and the table whirrs and hums and ratchets down and forward a few feet, and the door unlocks and opens, and one of your two techs comes into the room and loosens your “helmet.” “That’s all for today,” she chirps. You sit up as if you’ve only had your colors done. Your head wobbles. You feel as if your head is about to fall off, but then you realize you’re just a little light-headed. You can make it back down the hall, keeping your head on the leash. . . .your head, that balloon that you pull along behind you, bouncing against the ceiling.
I try to tell them I’m not having those leg jerks and attacks of “the shakes” all over my body on purpose. My brain doesn’t want to be zapped.
If only it were my foot or my butt or anything but my brain getting the dose. We’re only issued the one brain at birth. And when you live the life of the mind and aren’t athletic and can’t even sew, it makes you jittery to think of your brain getting fried. No wonder patients occasionally have nervous rigors.
One day there’s a gas fault in the facility’s walls, and everything stops and goes dark right after my treatment ends. I hear yelps from other rooms. “Gas fault,” says a synthesized voice. I yell at the speaker in the ceiling, and they reassure me it’ll be only a moment. “The other day, patients were stuck for forty minutes,” she adds for no reason.
Anytime they don’t come in to get me right away after the final beam darkens, I get panicky. What if they’ve forgotten me? They’ll just leave me in here, strapped down, until everybody goes home and the place is dark for the night. I’ve developed claustrophobia.
Intellectually, I know there’s a man scheduled right after me and others lined up after that, and so they’ll be here soon. But by then it seems I’ll have died of fright. Sometimes I shout, and they come bursting in as quickly as the lead vault’s door will swatch open. “We’re only waiting for the film. You’re all right.”
I don’t know how they can do this every day. I admire the staff. Why do we have parades for sports “heroes”? These are the heroes and heroines.
# # #
I’m midway through treatments. It’s exhausting. It seems endless.
Several acquaintances who’ve come through a serious illness have told me that attitude and visualization are the most powerful tools we have. When I have time, wherever I am, I just close my eyes and begin visualizing.
I imagine the rubbery green men of the clean-up crew in my body. They look kind of like a lighter-skinned Gumby. They spend their time stomping around in the port-selected areas of my braincase and body. They scrape up any cells that look abnormal and, using silver ice-cream scoops, pack them into steel buckets. Once the buckets fill, Gumbys seal the tops and jump into my bloodstream, floating away. White cells scavenge the healthy tissue remaining for any specks. Meanwhile, more rubbery Gumbys stretching themselves back and forth anyplace where cells are dying or missing, and they replace the tissue while it heals around them.
Let this be a metaphor for the healing my body is receiving.
# # #
Mama says she thinks some environmental factor in our remodeled house caused my illness. My husband pooh-poohs this, pointing out that resale values have fallen and that we’re unwilling to move on a whim. She tells me, without thinking, “If this comes back on you in six months, then I’ll know I’m right, and I’ll have the last word with your husband.” Well, that reminds me of the one-dollar bet in the film Trading Places, in which two people’s lives were ruined, but the bet was won.
She doesn’t mean to scare me. She has no filter between her thoughts and her mouth, which is always in gear.
# # #
By the end of February, I’m feverish and nauseated and achy.
I complain to my nurse.
“You’ve had a little virus over the weekend,” is her pronouncement. “It’s not the radiation. Have you had a bad headache yet?”
A “bad” headache is one that you’d cut off your head to stop, because it’s unbearable. As with some migraines, patients stand on their heads or beat them against the wall to try to dull the pain. If one of these beasties occurs, you take the steroids that were prescribed to stop the brain swelling it may indicate.
No matter what its cause, I have morning-sickness-stomach this week and can’t keep much down. They suggest Ensure; I gag on the protein drink. But I lose six pounds. That part I like.
# # #
Only seven more treatments to go.
When during my checkup I mention a lump forming behind my ear, Dr. Goldwell’s face distorts. The professional “doctor” veil descends and he practically grabs at my head to see. Then he breathes a sigh of relief. “It’s nothing. We’ll watch it. It’s probably where your weight presses on the helmet.” Today they cushion it with a bit of cotton.
As I make my way down the inner hall, a clump of chestnut hair floats to the floor from a woman whose wheelchair is rolling past. What can I do but step around it?
The patient who goes in just before me, a woman I have greeted daily as she walked out of the treatment area–the one who barfed into the trash–didn’t show today. Did she quit or get sick? I don’t even know her name, and I forget to ask after my treatment. Later, I overhear a nurse explaining to a newcomer that some people die from the radiation before they can complete their treatments. This makes me feel so much better.
# # #
Only one more session. Last day in the mouth of the dragon.
The doctor and I have our final consultation. I have a few blind spots, but nothing big enough to be consciously aware of. I can drive! No picking up anything heavier than ten pounds, and no bending over.
“As I say to all my patients, I hope I never see you again,” he says, shaking my hand. He’s smiling. I’m a success story.
# # #
A lot of people have been praying for me.
Some sent positive energy, others spun virtual “prayer wheels.” No matter what the terminology, says my nurse, “it’s all the same God.”
This time, I got lucky. For some reason, when I prayed that I needed more time and wanted to accomplish my mission in life, I got a “Yes!” I don’t yet know what this mission is going to be. It’s like wading through a swamp in the dark; you’d like to have a map and a stated goal, but that’s not what you get. You wish for “a flashlight unto my feet,” as the child in Sunday School said, misquoting the Bible amusingly. But what happens is that you take a step and then trust that you’ll know when and where to step next.
Why me? Why you? Why anybody? I suppose the question is, why not us?
# # #
There’s no such thing. But I had my final follow-up visit with the doctor. The building seems unfamiliar now. It all seems so far away that it must have been somebody else lying on the steel table, enduring the endless burning beam. I have a blister behind my ear where that lump had been, but it’s supposedly just from irritation.
On impulse, I asked him what the chances were that the treatments hadn’t worked.
“I’d say between 15 and 20 percent.”
I wished I hadn’t asked.
He smiled and said he was sure I was all right, and I should call him with any questions.
I’m not the kind who usually hits the lottery or wins the giant stuffed banana at the State Fair. But this time, I’m lucky. I will be in the lucky 80 percent this time because I WILL be. I know I am.
Lucky, I mean.
Really, if you do read it and have suggestions, please speak up, either by email or in the comments thread. I do change tense to past tense in the final two paragraphs to indicate that now we’re in present story time . . . but I may change that and put it all in present tense.
I’ve given up on the Gather contest. Every other entry is rated 6.5 or so (and I’m stuck down at 6.1 or thereabouts). It’s a mega-slushpile. They should have done the screening that they said they were going to do. Anyhow, it’ll be fun to see who is the most popular Gather member!