Frontal Lobe Brain Tumor

Written in 2020.

My eyes open in an emergency room. The room was white and cold. I am very confused. I see my mother. A doctor is telling us I had a seizure and I have a brain tumor.

I am immediately escorted out on a stretcher and into an ambulance. I am freezing, but it is the middle of the summer, early August, to be exact. The hospital was in the next town over. I’ve had a brain scan done, and there was an irregularity. I knew there was something wrong and had been telling people around me for years, but it had been misdiagnosed time and time again. That was my first seizure and hopefully the last. I remember that panicked ambulance ride with the EMTs telling me I’m going to be okay and that I’m on my way to Philadelphia to one of the best neurology departments in the country. My mother was in a car behind the ambulance following close. I just close my eyes, but I’m being encouraged to keep them open.

The next thing I can remember is waking up to a picture of a brain with a red object in the center. Someone is talking to me, a young man. He knows I’m disoriented. He keeps repeating himself. Finally after the third or fourth time, the words are more clear to me.

“Kristen.. can you hear me? Can you understand me? You’re at Penn Presbyterian Hospital. You had a seizure. ..”

I keep thinking to myself, “What is this person talking about? What had just happened, and why can’t I remember?”

I nod. I manage to speak and say, “Mmhmm.”

“Okay, great, Kristen. This is your brain, you just got an MRI. The red in the center here is a tumor. Okay?”

I think to myself, Woah, that is MY brain in that picture… and what is in the center of it? He just said it’s a tumor. I think right? Okay, just say something, Kristen. . . Say Something. I’m trying to talk.

“…yeah.” I respond in an un-surprised tone.

“We’re going to have to operate and get it out. Okay? We’re going to have to do it pretty soon, alright?” He says in a serious doctor-like tone, like he’d been practicing and perfecting bedside manner for all of the 30 years he’d been alive.

Holy crap, really? I’m not that surprised, I knew this, I knew something was wrong. This seems a little extreme, though. Well, I should probably answer him soon….

“…okay. Mhmm.” I didn’t know how to respond. The words were hard to express, I couldn’t tell if it was the tumor making it hard to retrieve the words, or if I was just simply at a loss of words. It’s a strange thing to be told — you can’t prepare a response to such news.

My mother and brother, Jeff, are to my right. I’m in a hospital gown connected to tubes. My veins have never worked, so there was a port in the middle of my neck. I assume to give me anti-seizure medication. I look over at them, and they’re very concerned. They both put on a sad, happy clown face so that I don’t feel terrible. I know that face all too well.

The doctor begins to speak again. “Now I’m going to have to get in there and take as much as I can out. We won’t know if it’s benign or malignant until we remove it and send it to our lab.”

I knew in my heart, and because of my family history, there was a 90% probability of it being cancer. Wow, alright, this is really happening. Is this really happening? But is it like a dream, though? If it is a dream, I believe this would be considered a nightmare.

Yes, okay, I am certainly awake. I am getting surgery, and it’s brain surgery. I’ve never gotten surgery before. I’m scared.

“We will schedule you for the next opening the day after tomorrow. Do you have any questions for me?” He was young. But that bedside manner made him sound much older.

I wanted to ask his age, but I didn’t. All that I could get out was, “Are you going to shave my head?”

I hear the exhales from my mother as if it was a stupid question. It may have been, but the cancer didn’t bother me. Hey, if I’m going to die, I’d like to have my hair. I wouldn’t want to die a bald-headed cue ball.

The doctor was Russian, young, and very serious. He was a brain surgeon, or technically a neurosurgeon. He was not surprised at my question.

“No, what we’re going to do is only shave where we need to make an incision. So it will be a question mark shape on the left side of your head. It is slightly askew to the left frontal lobe of your brain, so the incision will only be about this big..” he gestures to my head, an invisible curve on my scalp.

“It’s only going to be a small incision?” I ask as my voice cracks and tears build up in my eyes.

“Yes, and we will have your hair braided in a braid to keep it away from the opening..”

“ Okay…” I had no words left. I had a faraway look and just looked at my family members. They were a bit frozen as well.

He continues, “This is a slow-growing tumor, and if I could pick anywhere to have a brain tumor, it would be exactly where you have it. You seem to have functioned for years with it, and it’s actually between the lobes in your brain. It’s within the cells, between the areas. I have a good feeling about this, okay?”

“How old do you think it is?”

“It’s hard to tell, but I’m guessing about 5-6 years or so.” He seems concerned yet somewhat optimistic. I cannot decide if the optimism is a facade for me or for my family. Maybe he is optimistic about this. Oh wow, I am so tired.

He leaves the room, and I’m left with this brand new revelation about my health. There’s silence in the room. Silence has a sound. It’s a lack of vibration in an empty, barren hospital room. I’m processing, at least trying to process this news.

“Julie’s on her way, Kris.” My mom says in a calm tone, covering up the true panic she is feeling at the same time, breaking the solemn silence in the room.

“I think everything is going to be fine. He seemed really confident, Kris.” Jeff quickly spews out as if he knows I’m irked by my mother’s panic.

But I look at him in a “what are you going to do?” kind of way. He confirms the look with a similar look. This situation keeps occurring in our immediate family. He had childhood cancer twice, my mom had breast cancer twice, and my dad passed away from cancer. They were all too young to have it. I suppose this is my turn, my turn to be strong, my turn to persevere, my turn to overcome the odds. I think I’m strong, I had to be strong my entire childhood. But I’ve never had surgery before, and it’s in my head, in my brain. There’s nothing I can do at this point. I am already in the hospital, I’ve already had a seizure, I suppose it is protocol to have the tumor removed. I’ve been running my entire life. Running away from something I couldn’t figure out on my own. I tried to solve this problem that I’d been blind to my entire adult life. I’m 29 with a brain tumor, and it had taken years and years for an accurate diagnosis.

I sleep, which is normal to do after someone has such an intense seizure. The shaking of the brain makes a person very tired. When I wake up, I see my brother and sister. They are older than me by three years, and they are twins. When I was a very young child, I thought it was normal to share a birthday with another person. I thought I was weird for having my own birthday. It was lonely, I wanted to share it with someone else. But my siblings could not look any different. Julie had blonde curly hair, blue eyes, and pale skin. Jeff had wavy brown hair, green eyes, and a medium complexion. They also had super different temperaments, personalities, and mannerisms.

“Hey, Kris!” Julie says in a cheery tone.

I’m groggy, and I reply with a muffled “Hey.”

She’s visibly upset but holding it together so I do not get upset. I wish people didn’t do that, it’s a bad situation. We all know it. Just be upset. I’m okay with all of this at the moment. I had it solved. I had myself figured out. I found the answer to my problems as to why I hadn’t been progressing as a human being. I could never focus on anything. I was depressed. I was hyper. I was running. I was never satisfied. I was drinking. I was wild. I was super impulsive. I had been misdiagnosed. I was not in a good place, to say the least.

Now, I have been diagnosed accurately after about 10 years of various hospital visits. I would always end up in the ER for vomiting. But it was not the usual puking — this was violent. It would last for days and days. I could not eat or drink. After 24 hours I had just ended up a puddle on the bathroom floor. I have been hospitalized about 10 times for this issue. I had my stomach X-rayed. My abdomen was scanned — several times. Never once did I get a diagnosis. I have the answer now.

All I have to do is survive now.

TAGGED WITH: Oligodendroglioma

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Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.