{Irruption}: an invasion of birds in unusual places

Category Archives: Brain Tumor

Brain Tumor


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’ve Got the Music in Me

Friends David Hayes, Pam Presta Miller, and Cari Johnson Pelava were all members of my wedding party in 1978. When I moved from Dodge City, Kansas, to Hermosa Beach, California, in 1976, they were some of the new friends I made soon after I arrived. Cari and David were former Michiganders and are directly responsible for me meeting Jim—the love of my life. David recently moved back to Michigan, Pam lives in Ohio, and Cari lives in Minnesota. We put our collective heads together and figured out some days towards the end of September when we could spend some time at my house. It was time for a reconnection, since Jim and I had not seen Cari in thirty-four years and Pam in ten. We spent our days laughing, sharing old pictures, making fun of each other, and catching up on each other’s lives. There, however, seemed to be a constant as we enjoyed each other’s company: music.

Music played in the background whether we were in the car or in the house. One day when we were traveling, as I rode in the backseat between Pam and Cari, I started singing  “Stuck in the Middle with You.” One morning, as people were waking up and wandering into the kitchen for their first shot of coffee, someone mentioned having a weird dream. Naturally, since we all lived in California during Fleetwood Mac’s Rumours album explosion, I started singing “Have you any dreams you’d like to sell?” from the song “Dreams.” The more I fell into this pattern of singing instead of talking, the more difficult it became for me to stop myself. It was as if I had lost sight of language unless it was attached to a song. At one point David asked me how I could remember lyrics for just about any song even though I had trouble remembering things from the past year or two. His question made me stop and wonder: How was it possible that I could remember songs and lyrics? Was I reconnecting to the past through music or because of music?

On September 5th, 2011, I began reading Musicophilia by Oliver Sacks.  He examines how music and the brain function together. As I always do, I wrote comments in my journal and made notations in the periphery of the pages of the book. As I recently reread my comments while working on this essay, I discovered a chilling comment I had written after reading about “motion parallax (the shifting appearance of the visual world as we move through it)” (155). My journal comment: “How I feel before a migraine.”

I had been having unusually severe headaches during the summer of 2011, particularly when the barometric pressure rose upward as if a needle on an old stereo, as it finally reached the end of a song. Motion parallax also seemed to happen when the barometric pressure spiraled downward.  Everything synthesized on October 29th, 2011, when I suffered a Grand Mal seizure and discovered I had a brain tumor. Now that I look back, it’s almost as if reading Musicophilia during this time frame in my life was meant to be. The warning signs were there, but I failed, or perhaps refused, to heed them.

As I continued examining my journal notes from my initial reading of Musicophilia, I noted my fascination with the passage Sacks wrote about a session with one of his patients the poet W.H. Auden attended and said the session “reminded him of an aphorism of the German Romantic writer Novalis: ‘Every disease is a musical problem; every cure is a musical solution’” (274). Why do I feel so moved by that insight into the human psyche? Why has music played such an important role in my life? Maybe I don’t know the answers to these questions yet, but I know I am not alone. I know that music affects my friends as well.

One night Jim, David, Cari, and I sat on our deck watching the moon rise over the lake with our conversation further illuminated by several candles burning on a small table. Most of the lights in the house had been turned off. The Eurythmics “Would I Lie to You?” blared from the stereo inside with Annie Lennox’s voice fueling the driving drumbeats while Dave Stewart worked his guitar magic. We noticed Pam, inside, dancing and singing as if no one else existed. It was as if those of us on the deck had disappeared, and Pam had been overtaken by synesthesia—a “fusion of the senses” (Sacks 192). I understood how this could happen, because when I listen to this song on my iPod, it makes me want to run or walk faster as if I could spin myself into the future.

I also remember moments of Pretzel Tour road trips with Micki Holladay, Rachael Livingston, and Jeanne Beilke where conversation ceased. Micki would slip one of her CDs into the car stereo, and as an old familiar song began to play, we would sing along while our bodies gently moved, even though we were strapped in by seatbelts. What role does music have in the synesthesia of friendship? And as we sing and remember, are we returning to a time in our past when life was much simpler? To a time when we were young and the future seemed to be a long promise in front of us?

I also remember when I taught at Saginaw Valley State University, and I played guitar and sang with the Cremains of the 10th Circle. We practiced once a week in the Cave, multiple times a week if we were going to perform somewhere, and I practiced at home every night for hours at a time. I felt sorry for my husband and dog. Although my dog would place himself next to me on the floor, away from the amps, he would stick with me until practice was over. Jim stayed in the living room or ventured outside while his wife rocked the neighborhood. It was quite important to me to memorize the lyrics of the songs I practiced and not use a cheat sheet during a live performance. This isn’t to suggest I was perfect: I screwed up lyrics quite a few times. The band was loaded with talented people, and I wanted to try and keep up, perhaps convince them I was worthy to be in the band.

I wonder now if I could perform live without a cheat sheet. Could I nail the lyrics? When I practice, my fingers seemingly fly across the guitar with abandon, but what about the lyrics—the language of the song? Sometimes I practice with my eyes closed, hoping I won’t have to open them to look at the typed or written words on my cheat sheet. These songs should be as embedded in my brain as much as songs I wrote while I lived in California or songs I survived on during my high school years. If I can answer a question with lines from a song, there has to be a reason. I know that music is the solution to my problem—and I am working my way back into the way my life was before everything suddenly changed if that is possible. Maybe music is my solution because music is how I connected with so many people.

Reconnecting with friends and relatives over the past year has reminded me how lucky I am to have such amazing people in my life. I have only mentioned a few of those people in this essay. They are the mirror to my past, present, and future. If Novalis was correct when he wrote “every disease is a musical problem; every cure is a musical solution,” then I am ready for the cure. When I sing some of my original songs such as “Radio” and “Highway Michigan,” my own moment of synesthia forms, and the people in my life, the memories, and the sheer joy I find in the sounds, the images, and language connect and reconnect me to everything that matters.

Sacks, Oliver. Musicophilia, New York: Vintage Books, 2007, 2008. Print

I developed a huge crush on Boz Scaggs when I first heard “Near You” from his 1971 album Moments. In 1994, the song “Lost It” from Scaggs’ album Some Change seemed particularly poignant to me. I listened to the song repeatedly as if I could not get enough of the sound of the guitar playing Spanish blues, Scaggs’ voice, and the lyrics. Recently, I got to see Scaggs perform with Donald Fagen and Michael McDonald in Interlochen, Michigan, as the Dukes of September. As the sun set and the stagehands finished preparing for the main event, I felt at peace. This was my first concert since my seizure and the discovery of my brain tumor. I wondered if the strobe lights or the loud music would affect me.

Research has shown that people prone to seizures need to be aware that certain triggers can cause additional seizures. During the opening song, a song I cannot remember, I noticed the dimming sky on my right as the sun began to set, and the open theatre, like a giant tiki bar, seemed to set the stage for trouble. I began to feel sick, the same feeling I had before I had a grand-mal seizure, also known as tonic-clonic, during the Zombie race in October 2011. The sky changed from peaceful to menacing as the strobe lights began to affect my vision. I considered telling, Jim, my husband, we should leave immediately, but I convinced myself I could get through this; after all, I was on powerful anti-seizure medication. I began looking away from the strobe lights and towards Green Lake off to my right where several boats had parked to listen to the music. As the first song ended, I felt greatly relieved: Nothing had happened, and I had figured out a coping mechanism: Look away from the strobe lights. Relax.

The Dukes of September played a mix of songs that included Motown hits, country, and songs from the bands they had been in. Scaggs sang a variety of his hits, and Willie Dixon’s “The Same Thing,” but he did not play the song I really wanted to hear: “Lost It.” I wanted to hear the acoustic guitar and Scaggs’ silky voice as he sang about “those ancient Spanish blues” and sang the words that had been stuck in my brain since 1994: “I saw myself awake, but still dreaming.” I was that person; always awake and always dreaming.

When my mother started showing signs of Alzheimer’s years ago, I became aware of her stories that seemed as if they were dreams, but also seemed to have a place in reality. There are those dreams we have where we imagine our future, but what about those dreams we have when we start slipping towards the past, seemingly moving away from the present and into those places in the past, that brought happiness and the promise of the future?

My father is now in hospice care at the nursing home where he resides. He is “awake, but still dreaming.” Prostate cancer, congestive heart failure, and vascular dementia are shutting his body and mind down. He imagines that my mother is alive, although she died in 2008. He tells me stories about Dodge City, Kansas. He refers to my thirty-year old son as “little one” and seems surprised when Matt shows up for a visit, fully grown, the years of being little far behind him. He tells me stories about Pekin, Illinois, a step even farther back in time from Dodge City. When I ask my father about one of his buddies from the nursing home, he tells me a detailed story about Cal pushing barges near Pekin. Lately, the Illinois River has become a vein in my father’s heart, and the subject of his dreams as he continues his excavation of memories. I wonder about the mix between dreaming, memory, and wakefulness. Will this happen to me?

I am not dreaming now as I realize it has been over two hours since the concert began, I am dancing, a weird sort of happy dance, clapping my hands, singing along with Scaggs’ “Lido,” and looking down when the strobe lights are too much for me. I know the band will not play “Lost It.” It’s a slow-burn of a song, and now the crowd wants upbeat songs they can sing along with or dance to.

Later, as Matt drives Jim and me towards home, I stare out the window at the night sky filled with stars, and I realize I want to hold onto this moment for as long as I can. But if this memory should slip away from me at some point in my life, I will dream of it and tell you this story.

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.