Running on the icy/snowy/slushy roads near my house recently, dodging the snow plow truck guy who most likely thinks I am ridiculous, I realized how dealing with my SBT (Stupid Brain Tumor) for the past two-plus years has affected every aspect of my life. The drama of the grand mal seizure during the Zombie Run in Traverse City, Michigan, in 2011, learning I had SBT, undergoing Gamma Knife surgery (radiation to blast the tumor), and dealing with memory problems, emotions (“Cry Me a River,” indeed), and language issues (*^#^*) seemed to be a story I was ready to shed or at least shred into little pieces. As I listened to Hall & Oates’ words on my iPod, “Where do you dare me to draw the line? / You’ve got the body, now you want my soul,” I thought, hey, whoa, “I can’t go for that.” I needed to rethink my running strategies, face my fears, and set goals for running another 5K, 10K, or half marathon and not worry about waking up surrounded by Zombies at the side of the road. Time for a new game plan.
My one-year MRI in November 2012 showed that the tumor had shrunk a bit, but the edema was nasty and creating balance issues. My two-year MRI in November 2013 showed that SBT had shrunk a teeny bit more and the edema had “markedly decreased” since 2012. Since I had been feeling much better, I convinced my new neurosurgeon, Dr. Ma, to cut back on my anti-seizure medication since the dosage seemed to keep me in a perpetually stoned state and not in a good way. He scheduled me for an EEG, and on January 2nd, my son dropped me off at the hospital for my date with Angie and her electrodes. I sat in a very comfy lazy boy chair, feet up, blanket on, and waited while Angie dressed me up like some modern day Medusa, and she promised that the gel she used to stick the electrodes on my head would wash out easily. Two days later, I still felt like Cameron Diaz’s character in Something about Mary.
After a long series of tests to determine if I would have a seizure or perhaps slip into an alternate universe, Angie said she could see exactly where the radiation had zapped my head. Of course, I would have to wait for Dr. Ma to explain it all to me. I wondered if my brainwaves took a little detour around SBT as they guided me through my daily tasks. Was there still a possibility that I could have a seizure while running or watching NCIS? I anxiously awaited the results of my EEG.
My husband and I settled into the examination room and waited for Dr. Ma. Before long, he walked in wearing a very sharp suit. He informed me that I had passed all of my tests. The EEG did show electrical activities in the left frontal area of my brain that indicated the slight possibility of a seizure. Because of this, I would have to stay on my anti-seizure medication. He agreed to reduce the dosage even more than he had at our last meeting, so I felt this was a huge victory.
I asked Dr. Ma how those brainwaves work around the area where SBT is located and where the radiation burned a bit of a hole in my head, so to speak. Imagine a heart rate monitor where the blips of lines go up and down on a regular basis if your heart is in good shape. I had certainly seen enough of these as I dealt with my late father’s issues through the years of hanging out in the ER with him. Dr. Ma said that the EEG showed a distinctly different pattern when the brainwaves churned through the “damaged” zone. He then said something that made me want to stand up and cheer: “Live life. You can’t go back.” I can go for that.
I’m feeling lucky, and I am ready to get my running game on and get this body into a much sleeker shape. More miles and less beer ought to take care of that. SBT might be in charge of what my body can or cannot do, but I refuse to let it take my soul. As long as I can move this body forward, I am heading out the door into the unknown.
If a runner falls in the road and no one is around to hear her, does she make a sound? Does swearing count as sound? Ear porn for anyone listening? Recently, as I cruised along at my slow ten-minute-per-mile pace, I tripped on road debris and fell hard. I have a photograph of my right knee to prove it. My left hamstring and adjoining gluteus maximus are now speaking in tongues every time I sit down, stand up, squat, or stretch. I am tired of straddling the white throne as if it is a temperamental old horse just so I can do my business. Despite the ugly knee, the pain in the butt (and elsewhere), all I can think about is running, which is obviously something I should not do until I heal. I am a very impatient person.
I was out for a short 3.5 miler, and I needed to work off my massively sore car butt. After five days on the road that included stops in Peoria, Illinois, to visit my uncle in the hospital, stopping in Olathe, Kansas, to visit friends, and continuing on to Eureka, Kansas, to visit another uncle before turning the old car around and heading for home, I needed to stretch my legs and clear my head. The only real exercise I had within that time frame was a walk in Kansas with my friend Gretchen where the wind blew so hard that I wondered if we might actually be blown into Missouri.
Back home, I headed out on one of my usual routes around Higgins Lake. Sunny skies, 20 degree temps, and my “Summer Run” playlist on my iPod® provided me a sense of calm and relief. I glanced to my right towards a hill I had run up during the summer, but decided I needed to get my hill-legs back before tackling it again. As my head swiveled back towards the road, my left pink running shoe found a groove in the rough pavement and stuck. My upper body propelled itself forwards. My left hamstring pulled itself into an unnatural braking system that failed miserably. My upper body kept going. My arms became turbine-like, speeding up as if an out-of-control windmill. I was “Freefalling” as Tom Petty famously sings, but my landing would not be similar to the one depicted by the skateboarder in the music video. I reached out with my gloved hands and fell onto my right knee before the rest of my body slammed into the road.
November at Higgins Lake is a quiet and peaceful time. Spring, summer, and fall vacationers are nowhere to be found. Locals are at work or inside their homes keeping snug by the fire. Ducks outnumber people. Deer, always facing you with that startled look, turn and run back into the woods upon your approach, but turkeys give you the evil eye before forcing you to turn and run into the woods. On this day, the only witness to my folly was a pileated woodpecker who continued to amuse himself about thirty feet up in a dead birch tree. I yanked out my ear buds, and I listened to him laugh at me.
I sat on the pavement for a few minutes wondering if I could even get up. I was mad. There were no cars on the road in either direction. I finally figured out that if I rolled towards my left side, I could perhaps pull myself up. This painful move involved a lot more swearing. I noticed that my favorite running pants were torn where my knee had hit the asphalt. My gloves had tiny bits of gravel buried in them. I reached for my cell phone in my Armpocket® and thought about calling my husband to rescue me. I realized I was only a mile from home. Damn it! I would walk if it killed me. I tapped the icon for MapMyRun® and switched the app from running to walking. I did not want to miss out on the rest of my workout.
I started hobbling along the road, and about an eighth of a mile from where I had tripped the light fantastic, or something like that, a man walked out of his driveway and headed down the road away from me. I eventually caught up with him. He looked surprised as I passed him. “You came up fast,” he said. Was he being ironic? Sarcastic? An asshole? Or was he just some old guy who had not seen my tumbling routine in the middle of the road. I wondered if it was too early for a beer.
After an excruciating mile of limping home, I opened the door and walked into my house. I must have looked worse than I felt. As my husband looked at me, the concern on his face obvious, I said, “I’m hurt,” as I pointed at my ass. I then pulled up my torn pant leg to discover I was bleeding. I had wondered why my knee felt so warm. As I pulled the torn material off of my injured knee, I felt the material rip the skin off of my leg. I almost passed out, as I began swearing in an even louder voice than I had used on the road. After counting the imaginary stars in the ceiling, I grabbed my cell phone, turned off my mileage app, poked the camera app, and snapped a selfie of my knee. It was time to update my Facebook status.
I walked around for a while and tried to avoid the inevitable: I knew I was going to have to clean my bloody knee. I stripped down and entered the shower. Later, Jim said he could hear me in the other room as I swore and moaned when the water hit the wound. I managed to clean out the gunk, apply an antibiotic ointment, and wrap it all in some pretty gauze. Something oozed through the gauze in a pale-ale color. Even though it was twenty degrees outside, I put on a pair of shorts. I could not find a chair to sit in that my ass didn’t hurt and my hamstring didn’t screech like some sad violinist on Quaaludes. Freefalling…not.
Two days later, I told the nurse I was a bit sore as I climbed up onto the bed that would soon be slid into the open MRI for my two-year checkup. It was hard to believe that it had been two years since my Grand Mal Seizure during a road race and a freefall I have no memory of. I do remember surreal voices whispering “brain tumor” as friends and family circled my hospital bed. Weeks later, I had Gamma Knife surgery and imagined the radiation killing off the ugly thing that affects language, memory, and emotion. Months passed. My dog died. My father died. Other people I knew and cared about died, and I began to feel caught inside a spiral of death and despair, and yet my family and friends were there to catch me, forcing me to stand up, to get over myself. Deal with it. I began freefalling into a world of unconditional love and support. Faith. Mercy.
One week after my two-year MRI, I watched a bald eagle soar high above me before it started its graceful and pure freefall towards the lake as it swooped down to catch a fish. I ran inside to grab my camera. The eagle was too fast for me, and I missed the shot of it flying almost straight towards me before veering off and landing softly on a branch of a barren maple tree some two-hundred feet away. The eagle began the work of eating the fish. I watched through a kaleidoscope of trees, seemingly hundreds of arms and legs protecting the eagle from voyeurs or predators. After the freefall comes sustenance. Patience brings its greatest rewards.
And isn’t that what literature requires, really, for the writer to feel like her life depends upon it?
I am not certain when I first realized I had a problem with language. Memories six months prior to my SBT (Stupid Brain Tumor) seem to come and go, and some memories are nonexistent. If not for stories from my friends and family, and the writings in my journal, some so strange they fail to make sense, it seems as if I ceased to exist in mind and spirit while my body lay in wait for embalming. I felt as I was a stranger in a new country, and the language barrier made me invisible.
Instead of displaying the gift of gab that my mother would accuse me off having when I was young, I began hesitating over each word, fearing some dreadful malapropism or simply using the wrong word (like dock) when I was actually describing the hoist. I had to walk on the dock to get to the hoist which held the boat, but for some reason, my brain now found ways to avoid the logical sequence of events or find the correct word. As the Beatles famously sang, “Say the word and you’ll be free.” Well, damn, I wanted to be free, and I felt as if my life depended on it. I began to retreat more and more into my home office, lie down on the couch, and watch television. I became hooked on NCIS and the character Ziva David.
Ziva David’s character, played by actress Cote de Pablo, is a former Israeli Mossad agent who becomes an NCIS Special Agent. Ziva’s malapropisms, called “Ziva-isms,” are well known to NCIS viewers. As Ziva adapts to American culture and its plethora of analogies, idioms, and slang, she also shows her fellow agents that she doesn’t take crap from anyone. As I became addicted to NCIS marathon days, watching five or six shows in a row, I felt as if someone was “jerking my brain” (chain) as Ziva said in one episode. The NCIS family became my family, and I gave up reading books and writing.
Time passed and my frustration grew with my inability to comprehend anything more complex than People magazine. One day, as I stood in my office, staring at hundreds of my books, I noticed Laura Kasischke’s book of poetry, Space, in Chains, sitting on a shelf, by itself, as if waiting. I began rereading her poetry, and when I finished each poem, I sat still and listened to the quiet. I decided I was in language rehab.
Eventually, I began reading novels again, slowly, as if I was learning to ride a bicycle. I wondered if I had finally adjusted to my anti-seizure medication or if the radiation from my Gamma-Knife surgery had opened up a sliver of thought in my clogged head. One day I opened my writing journal, and instead of recording my thoughts for the day, I attempted to write a poem. It was horrible, but I sent it to my friend Chris Giroux. Chris and I became friends when I taught at SVSU, and we had been exchanging our writing for many years, providing feedback, ripping what needed ripped, or praising each other’s work when we got something right. I began spending less time watching NCIS and more time writing. I felt the jerk, jerk, jerk of my brain as it tried to move past language rehab and into the real world.
As luck would have it, around the same time, a former student of mine, Alie Buckley, contacted me on Facebook. She had started a blog, http://ifcoffeecouldtalk.wordpress.com/. Alie asked me how I was, so I told her about SBT. She encouraged me to start a blog and share my story. Alie became my teacher, showed me how to start a blog, and offered to read my posts before publication and give feedback. Again, I felt the jerk, jerk, jerk of my brain, and started to write for a different purpose: I wanted to tell my story. Perhaps if I wrote it, I would understand it.
I published my first blog post on June 14, 2012, and the process has been cathartic, therapeutic, made me laugh as I write, and made me cry far more than I ever imagined it would. I realize I am writing now because my life depends on it.
I am still addicted to NCIS and spend the occasional afternoon on the couch watching reruns when my headaches or balance issues sideline me. I believe I am making progress in this battle against SBT, and I am hoping language rehab will soon be a thing of the past. But as I have learned, friends and family provide the constant source of strength I need in my life, whether or not I am in language rehab. So if you see me out somewhere, and we strike up a conversation, and I pause for a moment, wait. My words are forthcoming: They are on the slip of my tongue.
*Schulman, Helen. “First In Her Class.” The Friend Who Got Away. Eds. Jenny Offill and Elissa Schappell. New York: Broadway, 2005. Digital Print.
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?