In Sheryl Crow’s song, “Everyday Is A Winding Road,” she sings “I get a little bit closer to feeling fine.” I have been attempting to use this approach to my life as I negotiate the path having a brain tumor has put me on. This philosophy was recently in play as I waited for my flight at the airport in Manistee, Michigan, I noticed a small dog running alongside a man driving what looked like an oversized golf cart tugging a small plane. The flight to Chicago would take less than an hour, and this was my first flight without my husband since my brain tumor invaded my life. I figured the dog would bring me luck.
As the plane rose above Manistee and headed towards Chicago, I watched the incredible view of the coastline and Lake Michigan. Micki Holladay, Jeanne Beilke, and I had decided to rent a car in Chicago and travel Route 66 until we reached Lebanon, Missouri. Once there, we would cut to the west and travel to the Lake of the Ozarks and stay with Gretchen Leonard Steffen and her husband Robert. Rachael Livingston, the fourth member of the Pretzel Tour Gang, would be there waiting for us. Jon Jambor, another high school friend and dubbed an associate Pretzel, would also be joining us.
I had not seen Micki, Jeanne, and Rachael since August 2011 during Pretzel Tour 2. My seizure, followed by the subsequent discovery of my brain tumor, was in late October 2011. I had not seen Jon or Gretchen since Pretzel Tour 1 during the summer of 2010. I wondered if my language, memory, and emotional problems would be noticeable or if I would be able to hide them. I also have balance problems, and I wondered if I would fall down somewhere or wipe out in the middle of a tourist stop on Route 66.
Our adventure started well, and we stopped at a lot of tourist spots on Route 66. On the second day of our trip, Micki slipped her personal mix of music into the cd player. Nat King Cole’s version of “Get Your Kicks on Route 66” set the stage for our journey:
“If you ever plan to motor west, travel my way, take the highway that’s the best. A-get your kicks on Route 66.”
We were getting our kicks, no doubt about it. However, I was having trouble with the heat and humidity, so I tried to rest when I could and stay out of the sun. I think Micki and Jeanne were afraid to let me try my map skills after my most recent bout of getting lost, but during a torrential downpour, severe weather, a horrific bus accident that shut down 55 on both sides, and crazy detours, my mapping skills were put to the test.
We had been travelling along on Route 66, which parallels 55, when Mother Nature showed us who was boss. With Micki driving, Jeanne riding shotgun, and me trying to negotiate Google maps from my iPhone in the backseat, I thought I was guiding us to a little winery just north of Litchfield.
In what became known as the “Litchfield Incident,” I guided us to Litchfield, where water gushed out of downspouts and small lakes covered the streets. The sky stayed the same dark gray. As Mr. Blue Ball on my Google map happily bounced along as we made forward progress, we stopped in amazement as we reached our destination: Litchfield’s police department and fire station. No winery was in sight. From that point forward, I was relieved of my duty to guide us anywhere.
After a fantastic trip on Route 66, we set aside our quest for the history of the Mother Road, and headed towards Gretchen’s in the Lake of the Ozarks. As a child, my parents used to take me to the Lake of the Ozarks, and they had once taken Gretchen and me there for a weekend of water skiing and goofing off. I was overcome with happiness in this place that was somewhat familiar, but also so unfamiliar.
My friends were incredibly kind to me, reminding me to take my medication, helping me down the steep slope of Gretchen’s driveway, and encouraging me to traverse the floating dock. I tried to keep up, but I could no longer do so. I spent a fair amount of time sleeping or resting, enjoying the beauty of the lake, the joyous laughter of my friends, cuddling next to Gretchen’s dog Dakota, a Golden Retriever, and talking back to a very large parrot named Poncho.
After leaving Gretchen’s lake house, Jon led the way to Lawrence, Kansas, with Micki and I close behind. Rachael and Jeanne brought up the rear of our caravan. Jon parted ways with us, and the four of us had a beer and a bite to eat at the Dynamite Saloon. After walking around for awhile, it was time for Micki, Jeanne, and I to head east towards Chicago. Rachael had to head back to Tulsa.
We spent our last night together in downtown Chicago. I was too tired to go out for dinner with Micki and Jeanne, so I got comfortable in my bed and watched the Olympics. I was exhausted: I wanted to go home. I wondered if I had made a mistake. Had I let enough time go by to be out in the world? Could I last one more day to reach the comfort of my husband and my home?
The following morning seemed to go off without a hitch; no second edition Litchfield incident seemed to be in my forecast. Jeanne was scheduled to fly out of O’Hare airport later in the afternoon, and Micki and I headed to Midway. Although Jeanne and Micki had their boarding passes, I did not: Public Charters out of Manistee was small, and I had to wait to get my pass from their check-in booth. Micki and I arrived around 12:30. She was ready to head to security. Public Charters did not open until 4:00, so I had no way to go through security without a boarding pass, and the section of the airport I was stuck in had few chairs, lots of screaming children, an over-priced snack bar, and restrooms tucked in corners. I panicked. What if I had a problem? What if I couldn’t figure out how to get through security without becoming confused?
In “Modern Friendships,” an essay by author Phillip Lopate, he suggests that “Friendship is a school for character, allowing us the chance to study in great detail and over time temperaments very different from our own.” Learning to understand my frailties over the past year, and even longer as the brain tumor wedged its way into my psyche, I realized I needed to confess my concerns to Micki: I was scared.
Micki walked me over to the escalator and we rode downstairs to a large area filled with people on our right headed to the baggage claim area and people on the left joining the long line of folks waiting to go through security. Carefully, she explained to me just what I needed to do.
We returned to the upper area, where Micki spent time talking to me before it was time for her to go through security and head to her concourse. She reminded me of what I needed to do when I finally got my boarding pass. As she walked towards the escalator, I reminded myself that I used to be the confident one, and the friend anyone could count on to help through a difficult time. Wasn’t that part of me still there? Had the brain tumor eliminated what I considered my best attributes?
I finally secured a seat to wait for my airline to open its booth, and two small boys ran up and sat next to me. Their teenage sister sat down on the other side of them: Our foursome was complete. The children played games; I pretended to read my newspaper.
Once again, in my lucky life, things fell into place. Public Charters opened at three—an hour earlier than predicted. The man and woman behind the counter asked me if I would like to check my bag even though it was a carry-on. I sent it on its way. All I carried now was my small over-the-shoulder bag. I had three hours until my flight.
When I arrived at security, I noticed a sign for an “Express” lane. I asked the woman there if I was a candidate for “Express.” She smiled, said yes, and sent me down the hallway past all of the people standing in line. As I rounded the corner, another woman waved me through. I placed my bag and shoes in a bin, sent everything through the x-ray machine, was waved through the metal detector, and made my way to my concourse.
As I approached my boarding area, I heard a voice call my name: Micki was waiting in the concourse. We had a short conversation and another passenger joined in as we discussed the boarding process.
Later, after Micki boarded her plane and took off for Denver, it was finally time for me to board my flight to Manistee. The pilots flew near the magnificent downtown Chicago area as we headed north and eventually east. We entered a bank of clouds at one point, but soon the clouds disappeared, and I looked out my window and saw Lake Michigan below me. A freighter cut a smooth path across the water, and I realized that I, too, was part of something moving forwards, and what I left behind would be memories in the wake of kindness bestowed on me by friends and shared stories with people from my past.
Lopate, Phillip. Getting Personal. New York: Basic Books, 2003. Print.
“Everyday Is A Winding Road” by Sheryl Crow, Brian MacLeod, and Jeff Trott
“Get Your Kicks on Route 66” by Bob Troup, 1946.
I saved Woody from a fire once, but I couldn’t save him from kidney failure and old age. As I watched Woody struggle as he walked and moan as he climbed into his bed each night, I realized that I had to do the right thing. When Woody stopped eating, I knew it was time.
On January 14, 1997, my friend Vicki called me and said she knew of a dog I might be interested in. SOS Animal Rescue in Midland had found Woody at a pound after someone had dropped him off. Woody was currently living in a house about five miles from me, and I made arrangements to meet him. The minute Woody came bounding up the stairs from the basement of the house in wild pursuit of a cat; I knew I had to adopt him. I left the house with Woody in my arms, and surprised Jim and Matt when I walked in the door. Woody didn’t bark for two days, and I wondered if he had ever learned how. I was wrong. If he had been a singer instead of a barking dog, he could have toured with Johnny Cash.
Woody’s original name was Buster. He was no Buster in my eyes; He was Woody. I saw nothing wrong with renaming him; after all, my mother and father renamed me after they adopted me at two months of age. My birthmother named me Connie. Jo. My mother renamed me Melissa Jean. The name Melissa was based on a relative my mother had known when she was young, and my middle name was my mother’s sister’s name. From the moment I picked Woody up and drove him home, we became kindred spirits.
Woody soon began to be in charge of the house and our lives. He slept when he wanted to, ate when he wanted to, and he spent an enormous amount of time wanting one of us to play with him and his stuffed animals. We soon learned that Woody hated water, and when we first brought him up to our old cottage at Higgins Lake, he barked at waves. Woody loved to sit on the dock with me, but I had to forget about the notion of spending quiet time on the dock if waves were rolling in, their smacking noise steadily beating against the dock and boat. Eventually, he would give me a look that let me know he was worn out, and it was time for him to go in for a nap.
Woody loved to dance when he was happy. When I arrived home from work, or even if I had been out running and only been gone for 45 minutes, Woody would dance with joy at the sight of me coming in the doorway. He squealed, he twirled in circles chasing his tail, and then he would twist the other way around, squealing, suddenly stopping and waiting for me to pick him up to give him a hug. He was always happy to see Jim and Matt, but he typically just gave them a little twist and shout and not the full-out dance routine. If you have never seen a twelve-pound dog do the twist, you are missing out.
Woody envisioned himself as a lover boy. Despite the fact that we had him neutered a few days after we got him, Woody thought he was a love machine. He tried to make love to any dog that happened to come near him. Gender didn’t matter, and he didn’t have a species requirement either. We were once at Peggy and John’s house with their menagerie of dogs and cats, and Woody chased Brutus, a twenty-one pound cat, around the house constantly. He eventually caught up with Brutus and tried to do what we referred to as the mumbo-jumbo. Brutus didn’t seem to mind, but we did break up the action much to Woody’s disappointment.
In December 2004, a fire broke out in our house. The men who were refinishing our wood floors happened to leave their sander next to a large container of polyurethane in our laundry room. They had been gone for about twenty minutes before I heard a pop, ran to the other end of the house and saw the fire. To make a long story short, I grabbed Woody as I called 911 and got us out of the house. We ended up watching the action from the across the street at a neighbor’s. Luckily the fire damage was small compared to the severe smoke damage. The stuff we lost? I really didn’t care. I had Woody and that is all that mattered.
In the summer of 2005, our vet told us Woody had cancer in one of his legs and sent us to a specialist in Rochester Hills. My friend Patti went with me to the clinic. It was a very sad place. The vet at the cancer center said they had also discovered a tumor in Woody’s lungs. The bottom line: for about ten grand, we could have Woody cut open, take out the tumor, and then he could start chemo for his leg. Woody looked at me as if to say “I don’t think so,” so I said, “I don’t think so.” He never complained about the cancer in his leg, and he still barked at waves, squirrels, chipmunks, and us if we were too slow in doing what he wanted to do.
Last year, Woody’s vet said Woody kidneys were failing. I figured Woody could beat this diagnosis. Woody was our wonder dog. He seemed fine, a little slower when running and jumping, but he seemed okay. At the vet’s recommendation, we began feeding him special dog food, and he adjusted quickly, although he occasionally let us know he preferred steak and chicken. He still followed me everywhere, always wanted to be the life of the party, and slept on the floor next to me in his little bed.
A few months ago, we began to see a change in Woody. He still greeted us at the door, but the rock-and-roll dance had become a slow waltz. He no longer barked at waves, he no longer wanted to make love to dogs or cats, and he ignored his beloved toys. My heart began to break slowly, because I knew I was going to have to make a decision. I did not want Woody to suffer.
I learned a lot from Woody in the sixteen years we had together. Years ago, my friend Helen pointed out that Woody didn’t take crap from any dog, large or small, waves, or anything else he considered trouble. Helen told me I was a lot like Woody. By coincidence, I happened to listen to a Sheryl Crow song on my way to work every morning to pump myself up to deal with administration bureaucracy and students filled with excuses: “I ain’t takin’ shit off no one, baby, that was yesterday.” For my office, I bought a painting of a dog with tattoos and lots of piercings. He wore a t-shirt that said “Bite Me” and was called “Mad Dog.” I imagined Woody in this outfit, and I realized I was the human version of Woody/Mad Dog.
Mornings are most difficult for me now. I hear Woody waddling down the hall towards my office looking for me, his eyes filled with cataracts, his nose guiding him as if he were the great hunter searching for truffles. He lies down next to my chair and waits while I write.
Later, we will go to the end of the dock, and wait for the waves to roll into shore. He will look at me as if to suggest his barking days are over and indicate, by the turn of his head, that it is time to return to the house. As I carry him, I can feel him slipping away from me. Inside, we both take a drink of water and head for the couch. I lift him up next to me, and he snuggles in and falls asleep while I wait. I imagine the cycle of life, spinning loved ones towards me, but also away from me, and wonder where I am in the continuum.
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?