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.
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.