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 - on our health, our perception, or our behavior. 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. It was a small startup company, staffed by smart energetic young people full of ideas and enthusiasm.
At this point in the young company’s life, most employees wore multiple hats: working with producers; driving produce, sausage, and cookies across the state; working on the website; and serving customers. On that particular day, I didn’t need to go in until 2:00. My job would simply be 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 supposed to be a productive morning off but the heat and humidity felt debilitating. The only errands I could manage were to “walk” my boyfriend’s dog (we didn’t even make it around the block, taking a shortcut through the alley) and pick up my contact lenses.
As the day progressed, I increasingly felt unwell. I remember wishing that I didn’t have to go to work. Not the typical, “wow, I really don’t want to go to work” but, as horrible as it sounds, I remember thinking “maybe I’ll get in a fender bender and have an excuse to call out.” I liked my job! Something was wrong but it was nothing I could easily identify. Though I felt full of dread, heaviness, and fear, I went in at 2:00 as scheduled.
By the time I loaded the truck, drove across the river, and parked in the shadiest, quietest corner of the parking lot, these feelings had only increased. An afternoon thunderstorm was building as I settled in and opened my book, waiting for customers to arrive. I couldn’t concentrate because of this terrible feeling, again, not so much of sickness but of terror.
My first customer arrived as the wind picked up. It wasn’t raining yet, though I could already smell rain. The storm was coming quickly. I hustled the customer’s order to her car and chatted for a minute before announcing that I was very scared of lightning. As she drove away, I climbed into the cab of the truck, which I rationalized was the most lightning-safe place to wait for the other customers to arrive.
It was there that 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.
Next, I remember hearing someone shout from outside, “Are you alright?”
The windows were steamed up, it was raining. I must have fallen asleep. I feel panicked - I can’t believe I fell asleep, how embarrassing, I need to help this customer, I need to wake up! I groggily reached my left hand up to open the door but as I did so I watched it waver and jerk. I thought I’m having a seizure. Why am I having a seizure?
I want to be clear that up until that moment I considered myself to be healthy. I was 28 years old. For the most part, 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 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 (we will never know 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.
My supervisor met the ambulance at the hospital, making phone calls to figure out a timeline of events for Emergency Room staff.
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, seizing, for an hour and a half before I got medical attention.
The ER doctors didn’t know exactly what was wrong. They postured 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 seizing so hard that they couldn’t get a CT scan, so they induced a coma to get a picture of what was happening.
It was something like 10:00 at night at this point, and they could see a mass in my brain. The doctor asked my parents if I had a DNR (no, I was a healthy lady, remember?) and he 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 to get a better picture of that mass. It confirmed that I had a big brain tumor sitting in my right frontal lobe.
I woke up out of my coma later that evening. I felt like Dorothy in the Wizard of Oz, in bed and surrounded by people. 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.