The crickets in my head chirp loudly today as if I can hear them through the snow. Late November days can be harsh in Northern Michigan, and the crickets have not been around for months. Still, I can hear them. Bird sounds offer a respite from the unrelenting crickets desperate to be heard in my head.
During the daytime, ducks take charge of the lake. Common loons serenade from a distance as they search deep water for perch or bass. Mallards, mergansers, and buffleheads paddle nearby on the water, content as they dip their heads while searching for minnows. Mallards shuttle between the shoreline and the lawn beneath our bird feeders, their path clearly seen through the snow. By late afternoon, chickadees sing as they help themselves to seeds from the feeders, while a pair of mallards watches from below, the male craning his head upward as if willing a chickadee to drop a seed just for him. If I venture outside, the male quacks loudly at me, scolding me for intruding upon his territory, and waddles off towards the water’s edge. I don’t remember exactly when the crickets appeared. Was it during the summer of 2011 when I began suffering from excruciating headaches? Was it after I found out I had a brain tumor? Or did the crickets begin to chirp as edema began surrounding the tumor, its edges slightly altered after the radiation began to work its way in?
One morning I walked through the snow towards the lake, and shot pictures of ducks as they swam away from me. I wished that I could swim away from this constant noise in my head, and the balance issues that prevent me from running now or walking a straight line in the hallways of my house. I know this edema will pass eventually, and the crickets will disappear.
I imagine myself next summer swimming stealthily out towards deep water and diving down, searching for treasures only water can disguise. When I return to shore and step lightly onto the hot sand, I will feel a warm summer breeze stretching across my body as it silences the crickets. I will look upwards towards the brilliant sky, thankful and smiling.
I Wanna Be Sedated
Despite ear plugs and headphones blasting music the MRI folks provided, I wasn’t really prepared for the pounding and jack hammer noises for forty-five minutes. I don’t remember my first-ever MRI in October 2011, after I had a seizure while running in the Zombie road race. Yes, the drugs were that good. When I had a second MRI the morning of my Gamma Knife surgery several weeks afterwards, I did have a little happy medicine in me, but not too much since I had to be coherent for my surgery. The cage attached to my head by four screws was my biggest concern, and I figured nothing could beat that squeezing sensation. For my third MRI on November 14, 2012, I decided I would undergo the procedure without medication. As the MRI folks slipped me into the Open-MRI machine, I settled in, imagined floating on water, and soon heard Taylor Swift singing “We Are Never Ever Getting Back Together” through the headphones. Wait! The Ramones “I Wanna Be Sedated” screamed from somewhere in my brain.
Mr. MRI sings boom-boom-boom-boom-boom-boom-boom, and I pretend to hear “Ba-ba-bam-ba-ba-ba-ba-ba-bam-ba, I wanna be sedated.” But Taylor Swift keeps interrupting: “Ooh-eee-ooh, we are never ever getting back together.” I think: Wait…this is my time…my happy place…Ramones…“I can’t control my fingers; I can’t control my brain…I wanna be sedated.” I consider pushing the call button, but it feels like a fat minnow in my hand. The mad music machine continued playing songs I had never heard of while the MRI beat out its own form of torture. Was this hell?
Some forty minutes later, I heard the unmistakable sound of Toby Keith’s voice singing “Every Dog Has His Day.” “It’s about time,” I muttered to no one. Even though I had never ever heard the song before, I thought it was a sign from the music gods. After all, I had just written about a dog in a pre-MRI post on my blog. In my shaken, but not stirred brain, I believed Keith’s song meant my latest MRI would show a much smaller tumor.
After several days of waiting, I finally received an email with my results: “[The tumor] may be slightly smaller.” Further into the report I read: “There is now note of fairly extensive…edema involving left temporal white matter.” I knew from previous conversations with the Gamma Knife folks that edema around a tumor after radiation surgery is fairly common and could be responsible for my balance issues and headaches. Well, funky cold edema!
Dennis from Gamma Knife phoned me the next day after he conferred with the neurosurgeon. My MRI report was “as expected.” As for the edema, it would eventually go away, perhaps in two months or two years. I had three choices as for taking care of the edema: deal with it, take steroids for three weeks, or have brain surgery and remove the tumor. They highly recommended I did not have brain surgery. That works for me: I never ever want someone to cut into my head if it isn’t absolutely necessary. Bring it on, funky cold edema! Dizziness? Barometric-pressure-fueled headaches? I grew up in Dodge City, Kansas, SBT, and I’m not afraid of you.
Next November, I will have another MRI, and I hope my SBT, will have gotten a little smaller. I know I have some challenges in front of me, but that’s the way it goes in life. I am thankful for my family and friends putting up with me during this really crappy year. I could focus on the grief I have felt during the death of my father and dog this year. I could focus on the way having a meningioma has affected my life. Instead I have discovered that I need to focus on the joy music brings me. I realize that even if I could return to the life I had before I got smacked in the head, I would never ever wish for the old me. I have learned a lot about myself this year and what I should be focusing on. My family and friends are what get me through my days of uncertainty, and music, sweet, sweet music is all the sedative I need. Well, and maybe a nice cold beer at the end of the day.
Move it on Over
I will admit it: I’m obsessed with my brain. Here is a snapshot of my brain on November 16, 2011. Pretend you are facing me. There is a golf ball on the left side of my head. It does not belong there. I was not on a golf course when someone accidentally hooked a tee shot, watched it take a Happy Gilmore bounce, split my head open, and lodge in my left temporal area. The meningioma has been growing inside my head, rather taking up residency without my approval or a background check. I should charge it rent, but if I do, it requires a name and a checking account. Actually cold hard cash will do.
My SBT (Stupid Brain Tumor), though it resembles a golf ball, is more like a bad dog that follows me everywhere, pissing on my new shoes, biting my ankles, and growling at the neighbors. My SBT reminds me of several songs in which a dog is the antagonist in the “story”: Iggy Pop and the Stooges’ “I Wanna Be Your Dog;” Johnny Cash singing about a “Dirty Old Egg-Suckin’ Dog; or Earl Flatt and Lester Scruggs singing “Salty Dog Blues.” Perhaps the most relevant song to my situation is by Hank Williams when he sings “Move It on Over”:
Yeah, listen to me, dog, before you start to whine.
That side’s yours and this side’s mine.
So move it on over, rock it on over.
Move over little dog, a big old dog is movin’ in.
On November 16, 2011, I had Gamma Knife surgery; 54-minutes of radiation was aimed at my head to slice and dice the SBT. In a few days, I will have an MRI to determine if little dog is moving out.
Regardless of the outcome of Thursday’s MRI and the subsequent report, I will never be the way I was before. I see that as a good thing. For one thing, my dreams are better, more vivid, but it could be from the anti-seizure medication I am on. When I wake up in the morning, I think about my friends and family and how lucky I am. Then I move it (my body) on over to the edge of the bed, put my feet down on the floor, get up slowly, breathe in the day’s possibilities, and growl as I make my way towards the promise of a hot cup of tea. On Thursday, I will follow my morning routine as I take my moment in the MRI spotlight; and await the presence of big old dog as she rocks little dog right on out of the picture.
I have already taken the wrong exit, turned the wrong way, and turned the wrong way again. Now this: A large truck, pregnant with painted words on its large round belly, backs up slowly into the path of my car. The Purple Poop Pumpers don’t care if I am dead or alive.
I try to think—logically—how can I get myself out of this mess? I call Vicki to tell her I will be late, because I seem to be lost. Vicki tries to help me, but I have no way of describing where I am, completing ignoring the compass tucked into the dashboard like a sleeping baby. So I keep driving and turning.
Eventually I realize I should call someone else, and my cell phone makes the dreaded noise: no service. I drive a few more miles, searching for cell-phone service and sanity. I begin to wonder what I used to do when I was young; the pre-hysterical teenager, lost, no phone, and only cigarettes to smoke while I tried to figure out where in the hell I was.
I try and reach my son, Matt, but he is at work and does not answer. I call my husband, Jim, and when he answers, I shout: “Don’t ask any questions.” “Where are you?” he asks. “If I knew, I wouldn’t be lost,” I answer and hang up.
Matt returns my call, and I eloquently describe my own personal hell. I recognize the golf course I am in front of as a place he golfed at a number of years ago. I tell him the name of the golf course. Matt tells me to turn around, drive several miles, turn left, and I will be about ten miles from my destination. I learn I have basically gone around Otsego Lake, dipping westward, then southward, after I took the exit ramp near Gaylord, as if it were an intended scenic tour I decided to make while Vicki waited in a parking lot.
By the time I return to Gaylord and meet my friend, I have circled the lake in its entirety. I begin to cry after thanking Matt and hanging up. I call Vicki and promise I will actually be in Gaylord in the very near future. Her laughter is contagious, and I catch it, deftly, as if nothing in the world was as funny as this moment.
I thought that after the radiation, the tumor would not be in limbo in my head. I assumed I would be better, and never miss a right-hand turn again. I would always know where I was going, but today reminds me the tumor isn’t done with me yet.
Three weeks later: I am visiting my father at the nursing home he now resides in. It is a similar Michigan day with gray skies and rain. I imagine my father feeling the same way I did when I got lost near Gaylord. Even though he is in a building with sixty other residents and a multitude of nurses, staff members, and visitors, my father is lost. He is in some place that is familiar, but it is also unfamiliar. The lines have blurred.
My father asks me how things are in Alma, Michigan, as if he still lives in the house with my mother, although he doesn’t ask about her. Two days after that conversation, he asks me how things are in Dodge City. He informs me, my husband, and friends Peggy and John, that the food contract at the nursing home has been taken over by the folks who ran the Lamplighter in Dodge City. I wonder how far back in time he has travelled, but I do not ask, and instead vouch for the merits of their fried chicken and French fries.
This past Sunday: Matt and I visit my father. He tells us he wants out, and to bring his damn checkbook. I ask him where he wants to go. He says: “I’ve got two apartments in Dodge, so I ought to be living in one of them.” Matt and I exchange looks and say nothing. My parents raised me in a small farmhouse outside of Dodge City, but somewhere in my father’s mind, two apartments still remain, most likely filled with cowboy boots and his favorite hat, pictures of his brothers, big fat cigars, and furniture he has refinished in his spare time.
I think about the power of memory and the consequences of forgetting. My mother died of Alzheimer’s disease in 2008. I watched her slow death coming for several years, and listened to her stories become harder and harder to believe.
There is something inherently built into the loneliness of being lost, even in a room full of people. For me, I knew that when I was lost in Northern Michigan, I would always find my way back home. For my mother, I imagine that she got to the point where just having someone in the room with her was enough to offer comfort. But for my father? I watch him as he slips between apartments and houses he once lived in, and I hope that I bring comfort to him even though I am merely his daughter, breathing in what he is breathing out.
Garbage Shoot? Garbage Chute?
As an only child, I spent a lot of time in my room reading books. Nancy Drew stories were a favorite, and at some point, I decided I could write my own stories. My parents supplied me with books, most likely to try and keep me out of trouble. When I became a teenager, I discovered poetry about love, and I decided to write my own. My friend Gretchen and I would write poems together. I continued writing really bad poetry as I grew up, and it wasn’t until I went to college and graduate school that I finally learned the art of writing and my love of language really blossomed.
When I read that Sheryl Crow figured out she had a problem because she had forgotten the words to a song, I understood. How strange it must have felt for her to suddenly lose her words in the middle of a performance; after all, she had been writing songs—and singing them—for a very long time. Crow, though, was smart. She went to her doctor as soon as she had a problem. Crow’s meningioma seems to be small and not causing any major problems for her now. Unlike Crow, I ignored my symptoms for far too long.
In mid-October of 2011, I sent Darcy a message, and I explained that I might not be able to run the Zombie Race as we had planned because of the violent headaches I continually had. On race day, though, I felt good, so I ignored symptoms I had been having in the six or seven months prior:
Headaches: Taking a nap in the middle of the day because of the intense pain in my head. Sometimes the pain would be at the top of my head or the back of my head. If the barometric pressure suddenly went up or down, I could count on getting a bad headache. I joked about getting a job for the Weather Channel.
Memory issues: Forgetting what I was doing in the middle of doing it. Not being able to name things. Not remembering information my husband or son had told me the day before.
Emotions: Roller coaster feelings. Happiness followed by long bouts of sadness.
Vision issues: Did a blackbird just fly in past me? Was that a bolt of lightning coming from the clear blue sky?
Hearing issues: We blamed my hearing issues on too many rock concerts from the past and my iPod use!
Weakness in my left arm: We had no idea, but blamed weakness in my left arm on moving, guitar playing, sleeping on it wrong, anything.
Driving and missing turns: Sometimes I missed turns in Midland. During the Pretzel Tour with Micki, Jeanne, Rachael, and Denise, I missed several turns in Traverse City. Somehow roads that were once very familiar to me suddenly became confusing.
After having a seizure and finding out I had a brain tumor, I read as much information as possible. I also asked myself a lot of questions: What if I had suffered the seizure while driving to Traverse City that morning? What if I had been running the back roads by myself? What if I had been at home alone and fallen into the water? What if I had fallen off of a ladder? The outcome could have been very different.
I eagerly awaited my surgery. I felt very lucky that I was a candidate for Gamma Knife and radiation treatment that would start the process of shrinking the tumor. Some meningiomas require a different type of surgery to completely remove the tumor. You know, sharp instruments digging into your head, finding the stupid tumor, removing it completely, and a long recovery period. I wanted no part of that procedure. There are risk factors with radiation treatments, but I decided to take my chances.
For my Gamma Knife surgery in Midland, Michigan, I had prepared a mix of songs I wanted to listen to during treatment at the suggestion of Victor, a medical physicist. Looking back at my play list, I clearly had love and drinking on my mind. Stevie Ray Vaughan, George Harrison, Miranda Lambert, Kenny Chesney, and Pat Benatar—to name a few—seemed like the perfect music to listen to while my head was locked in a cage and radiation was being shot at my tumor.
After my surgery, I thought I would be the old me. Like a Nancy Drew novel, the case would be solved and life would go on. Words would fly out of mouth like bullets. I would be the storyteller spinning a tale without dropping a word. But I am not that person.
Every day is a challenge. I wonder what word to use in the simplest conversations. Is the hoist the dock or is the dock the hoist? Am I redundant or irreverent? Or as I texted Darcy one day while cleaning out my father’s apartment in May of 2012: “I need more bags for the garbage shoot.” A second later I sent this: “Garbage chute?” This is my brain attempting to autocorrect.
I am hopeful that with time, the tumor will shrink, and I will return to the storyteller I once was. That, however, may be a while. My next MRI is in November, and I am on powerful anti-seizure medication for two years at best. I find that I tend to call objects a “thingy” now when I can’t think of the word. This is my new default word.
Lots of people struggle with memory issues and if you see me in person, you cannot tell I have a tumor. But it is there, hiding out like one strange thingy. Shoot the damn thing down a chute. Right?
The nurses, Jennifer and Dennis, attached the cage to my head with four metal screws. I am relaxed and unconcerned with the fact that I now have screws in my head. Dennis takes me to another floor for one last MRI.
“This one will be short,” Dennis says. “We know what we are looking for.”
Since I have to be alert for the Gamma Knife surgery, I have been given a mild sedative. Frankenstein’s heart beats in my ears for ten minutes.
On the return trip in the elevator, Dennis stood in front of me in my hospital bed. A family slipped into the elevator next to us. Their children looked at me, horrified. I imagined myself as Hannibal Lecter, smiled at the children, raised my hand, stupidly the one with the IV, and waved.
The father said: “Uh, how are you?” His children seemed surprised by this question.
“I’ve been better,” I said.
Several hours later, the doctors attached a bar to the back of the cage before they slid me into the chamber for radiation. For fifty-four minutes, it was crucial that my head did not move in any way, shape, or form. The radiation precisely aimed at my brain tumor must not deviate, must not kill the good parts of my brain.
Larry, one of the radiation physicists asks me if I am comfortable. I am quite lucid now. The team attaches a heavy bar to the back of my cage. They slide me into the chamber. I am a Glamour magazine “Don’t” wearing hospital pants & my “Run like a Dog” t-shirt.
“I’m fine,” I smile at Larry.
“I’m going to start your music,” he says.
Pat Benatar’s “Hit Me with Your Best Shot” fills the space where Larry’s voice was.
“Can you hear it okay?” he asks.
“Yes, thank you.” Let the brain surgery begin.