something was wrong
Movies and other media regularly portray brain tumors as rapid, ruthless, and unforgiving, mercilessly killing the sweetest innocents. (Tragically, this is true.) We also see them in movies turning fine people into callous serial killers. (Tragically, I'm sure something like this has happened.) And then there are the movies where people with brain tumors become telekinetic geniuses. (Tragically, this is untrue.)
Clearly, people find brain tumors fascinating. They are fascinating because brains are fascinating and everything about us—our memories and experiences, our senses, our knowledge, our emotions, our fears, our muscle control, our senses of humor—happens in our brain.
Our brains are small and boxed in by our skulls. A tumor can grow undetected for a while, but has little room to expand without making big impacts.
I think that people have an interest in sensational stories, a natural curiosity mixed with horror about cases involving severe personality or behavioral changes. I also think that people secretly worry about their own worst case scenario: that their headaches or tinnitus could be indicative of a brain tumor (they could be!).
So it doesn't surprise me when people want to know, "How did you find out that you have a brain tumor?"
In a word, abruptly.
On August 2, 2012, I was working for an online grocery store focused on making local, sustainably grown foods accessible to people in my urban area. On that particular day, I didn’t need to go in until 2. My job was to load a box truck with groceries, drive that truck to a parking lot across town, and wait for customers to pick up their orders.
It was extremely hot and, as the day progressed, I increasingly felt unwell. I remember wishing I didn’t have to go to work. I liked my job, but for some reason I found myself hoping that maybe I’d get in a car accident and have an excuse to call out. By the time I loaded the truck, drove across the river, and parked in the shadiest, quietest corner of the parking lot, I was feeling incredibly heavy and tired. An afternoon thunderstorm was building as I settled in and opened “Tobacco Road,” waiting for customers to arrive. I couldn’t concentrate. I felt a strange dread, but it was nothing I could easily identify.
My first customer arrived as the wind picked up. It wasn’t raining yet, though I could already smell the rain. The storm was coming quickly. I hustled to bring the customer’s order to her car and chatted for a minute. I felt terrified, and remember telling this stranger that I was afraid of lightening. As she drove away, I climbed into the cab of the truck, which I reasoned was the safest place to be during the storm, to wait for the other customers to arrive.
I lost consciousness.
My next memory is just a few seconds long. It’s a dreamy moment—the light seems strange, my vision cloudy. I’m in the driver’s seat of the truck, my chin is on my chest, and I belch up a little vomit onto my shirt without warning. I thought, I don’t vomit. Did I just vomit?
I lost consciousness again.
The next thing I remember is hearing someone shouting from outside, “Are you alright?”
The windows were steamed up; it was raining. I must have fallen asleep. I was immediately panicked. I can’t believe I fell asleep, how embarrassing! I need to help this customer, I need to wake up! I need to clean up! I groggily reached out to open the door but as I did I watched my left hand waver and jerk. I’m having a seizure. Why am I having a seizure?
I want to be clear that nothing like this had happened to me before. Until that moment I had considered myself to be pretty healthy. I was 28 years old. I ate well and was in decent shape. In fact, I had been complaining the week before about how I was spending $160 a month for health insurance when I never had to go to the doctor and couldn’t afford awesome stuff like vacations and the internet. Sure, I had a few unremarkable bad habits and odd personality traits, but I was in the realm of normal. I had certainly never had a seizure.
Trying to open the cab door was the last memory I had before waking up in the hospital.
The next part of the story is what my boss later pieced together for me. Customers started calling customer service saying that no one was at the pickup site, or that someone was at the pickup site but seemed to be sleeping in the truck. I listened to my voicemails from that day exactly one time, months later. My coworkers sounded terrified and begged me to call them.
They knew something was wrong and called 911.
By the time the paramedics arrived, I had fallen out of the cab of the truck (no one knows how—did I open the door or did someone else?) and was having tonic-clonic (or grand mal) seizures on the pavement. I was bloody, bruised, and soaking wet from the rain.
My supervisor met the ambulance at the hospital, making phone calls to figure out a timeline of events for the doctor. There was that first customer who picked up her groceries immediately before the storm. She reported that we had chatted for a minute and that I seemed fine, albeit anxious about the storm. The next people to arrive were those customers who started calling the office—either they drove past and didn’t see me there, or they poked around a little and saw me sitting in the cab. These customers didn’t arrive until after the worst part of the storm had subsided. I had probably been alone, having seizures, for an hour and a half before I got medical attention.
The ER doctors didn’t know exactly what was wrong. They thought at first that I might have been assaulted (I was bruised and bloody in a parking lot, and head injuries can cause seizures). Then there was the possibility of an overdose (quickly dismissed due to my immaculate tox screen). I was still having such intense seizures that they couldn’t do a CT scan, so they induced a coma to get a picture of what was happening.
When they were finally able to get a picture of my brain, at around 10 pm, they could see a large mass in the image. The doctor told my family that if I woke up it was unclear if I would have brain damage due to the seizures alone.
The next day, I was stable enough to get an MRI, which confirmed that I had a tumor in my right frontal lobe.
I woke up out of my coma later that evening. I felt like Dorothy in the Wizard of Oz. As they bustled around checking my vitals, the nurses peppered me with questions: “Do you know where you are?” (Umm, the hospital?) “Do you know who the president is?” (Obama.) “Do you know what day it is?” (Thursday.) That last one was wrong, it was Friday night.
My boyfriend and family also had lots of questions. They asked about what had happened. They asked about specific memories—a sort of improvised memory test, begging to know "Is she the same? Is she still there?"
Then they told me I had been diagnosed with a brain tumor. Whatever drugs they give you at the hospital are powerful, and my response was ridiculously unfazed—something like “Oh, so that’s what’s going on.” Then I went back to sleep.