On Thursday, the ambulance had driven me to the nearest hospital. It happened to have a neuro ICU, which is where I was when I was lured into consciousness on Friday. Surgery was scheduled for Tuesday.
My memories of that long weekend are vague. My throat really hurt (I had been ventilated when I was in the coma), my head sort of hurt, I was very medicated. My sisters were there, my parents, my boss, my 6 year old niece, my sisters’ younger brother and his girlfriend, my boyfriend, my friends, friends of the family, a few members of my extended family. I felt so much love and gratitude.
My sweet niece in bed with me sometime during that incredibly long weekend between seizures and surgery.
My beautiful sisters posing with me the night before surgery (after we decided to shave off my hair).
My immediate family was more or less camped out in the waiting area, most visitors were gently received and turned away - there was too much going on for any of us to process or communicate. All of us were overwhelmed by being thrown into a situation which we were totally unprepared for and knew nothing about. I alone had the luxury of spending a lot of time sleeping.
The neurosurgeon at the hospital explained to us that there was great news about my tumor (of which we knew so little). It was close to my skull - not deep in my brain - so it was operable. But it definitely had to go, and it had to go ASAP. The seizures were a consequence of the tumor outgrowing the little space my brain could afford it. Waiting any amount of time would most likely mean more seizures. It was a miracle I had emerged from my seizures alive, not having surgery was not an option. It didn’t feel like shopping around and doing some reading on brain surgery centers was an option either.
The doctor couldn’t tell us anything about the tumor until he operated. He offered to do a biopsy to learn more about it before surgery, but it made sense for me to just do one surgery instead of two.
Genuinely having a great time with my transport team on the way to surgery
Immediately after surgery, before I regained consciousness
When I woke up from surgery I was immediately aware that something was terribly wrong with my left arm. You know that feeling you get in the middle of the night when you sleep on your arm weird and it tingles and hurts and is numb and you think it’s paralyzed but it is just “asleep?”
It felt exactly like that - somehow both numb and painful. But unlike those random uncomfortable nights, I couldn’t move my arm or hand. At all. I also couldn’t feel it at all. If someone shut my hand in a door, I wouldn’t have known. My left arm was paralyzed.
I was very surprised - I had not expected this. I mumbled something about my arm, people came in to confirm what I had mumbled, yes, my arm was paralyzed.
The doctor was surprised too. Not that his surgery had caused paralysis but that he hadn’t paralyed my face or leg. He thought he had been poking around in those areas of my brain more than the arm area of my brain. This was my first insight into the duality of the brain and the brain doctors:
Brains are incredibly strong - they can do so much - yet they are also incredibly fragile. And brain doctors are highly educated, but somehow they are just sort of shooting in the dark.
My head hurt. A lot. My head really really hurt. The doctors and nurses gave me morphine. I itched and scratched and was uncomfortable and my head continued to hurt. At some point a kind nurse brought me a small cup of hospital coffee.
Nothing has ever made me feel more human. It was the gesture, it was the miniscule amount of caffeine, the warm drink, the familiarity. Of course the drugs helped immensely, but it is easy to forget how quickly an emergency tears away all your foundations - the certainty of tomorrow was gone, for me and my family. No one knew how to navigate this - we all felt completely powerless and had no one to turn to for guidance. I’m sure everyone was reading things online, but there was no amount of research that could help in that moment. The stress is formidable. What am I going to do about work? My family, which has been thrown into worry and care mode - how are they going to navigate work? What about the costs of all this? How are they going to comfort me, how can I comfort them? Where is my car, who will drive my niece home, has anyone fed the dogs?
I had been in a cold, dark hospital room for almost a week at this point. I was catheterized and had a central line running drugs directly into my heart. I had been intubated until I was coaxed into breathing on my own. Everything was strange and scary post surgery. Until that tepid cup of coffee. It was warming, centering, relaxing. It was a degree of normal. It was the first thing that made me feel less like someone in the back of a noisy, bumpy, careening ambulance, and more like, I don’t know, me.
My neurosurgeon suggested that I would probably regain some arm function with time, and I would eventually do a lot of occupational therapy to help in that process. But after surgery and before I went home, I was granted a weeklong stay in the hospital’s rehab unit so I could learn how to live without my left arm.
The occupational therapist there fitted me for a special sling that would keep my arm from just hanging out of socket (seriously, no muscles were engaged) and she showered me. She showed me how to bathe and get dressed one handed and gave me “shoe buttons” so I wouldn’t have to tie any shoelaces.
Taking my first shower was a lot like that first cup of coffee. Even though I was sitting in a chair and someone else was sudsing me up, I was beginning to feel better. No, that’s not true. I felt like an emotional and exhausted garbage dump. But I had finally showered for the first time in well over a week.
I also did some physical therapy in rehab. When you are coming out of brain surgery, “physical therapy” is essentially just assisted walking. Brain surgery and injury (and being in bed for a week) impaired my balance somewhat, so the physical therapist held me up with a body belt while we shuffled up and down hospital corridors. She told me that this minute amount of exercise was also critical because I was taking steroids for brain swelling, and steroids are apparently famous for weakening hips in particular.
Getting ready to go on a walk with an occupational therapist, looking almost as ghastly as I felt
While in rehab, I did the first of a series of cognitive tests to make sure my cognition wasn’t affected by the surgery. I also met with a speech pathologist. Thankfully my cognition and speech were just fine.
Though I had already been in the hospital for a week, it wasn’t until I started moving around in rehab that we noticed things like a broken toe and slightly separated shoulder, probably incurred during all those violent seizures.
My neurosurgeon visited me in rehab to talk about the tumor and the surgery. Most brain tumors have some discoloration or textural differences that distinguish them from the healthy brain. My tumor looked and felt exactly like my brain, so he had to use the MRI as a map to scoop around for the bad parts (that’s when he nipped my healthy brain that controlled arm function). My subsequent MRI looked good although it was impossible to differentiate between scar tissue and tumor and swelling in those first images.
I was curious about the surgery and asked a question that had been asked of me by one of my visitors, “do I have a metal plate in my skull?” He answered that I have four(!).
You see, skulls have evolved to protect our brains, our bodies’ dearest darlings. This makes getting into the brain quite difficult. The surgeon cut a flap of scalp and flung it out of the way to access my skull. Then he carefully drilled four dime sized holes through the bone and used a jigsaw “just like the ones at the hardware store” to connect the four holes and lift off that section of skull, exposing my brain. (Unlike most jigsaws, this one had a “foot” to ensure that it didn’t penetrate too deeply. You know, into my brain).
After scooping around for the bad bits, he replaced that little skull cap, fitting it neatly into place. (I like to imagine the pumpkin “lid”). Luckily, bones like to heal - when bone touches bone it will fuse back together. But that would leave four holes - when the surgeon initially drills holes all the bone turns to dust. Where there is no touching there is no healing. To protect my precious brain, he screwed a plate down over each hole.
He said I have 20 screws. Again, “just like you can find at the hardware store.” I’ve been thinking about that number for 8 years now. That means five screws per plate, which seems a little screwy (sorry) to me. Is “odd to me” better? Maybe he miscounted or I misremember (I don’t know which situation I find scarier).
My tumor was about 3.5x4.5 cm. That is huge when it comes to brain tumors, because your brain literally has no place to go to make room for them, on account of that skull. Because the tumor was in my right frontal lobe, he speculated that it might have affected my anxiety, depression, impulsivity, judgement, decision making, emotions, coordination.
Nailed it. Sounded like me. Though some of these are very vague symptoms that a lot of young people struggle with, it explained a lot.
My sense of humor, intelligence, and personality are 100% not tumor, they are mine, all mine. (Although let’s be real, I very much doubt that my crippling anxiety didn’t have some impact on my personality).
The neurosurgeon also told me that my tumor appeared to be quite old (there was some evidence of calcification) which indicated that it was slow growing. He couldn’t say with certainty how old it was, but suggested it could have been growing for at least 10 years.
(I think I know exactly when it started to affect me, but that’s a story for another time, stay tuned).
One of my rehab nurses, Crystal, I love her, replacing my bandages
The incision and staples to boot
My brain surgeon made clear that he was just a surgeon - the hospital I was in could not help me beyond surgery. He sent thin slices of the tumor to a different hospital where a lab would diagnose it.
After my week in rehab I was wheeled out of the hospital with no diagnosis and no followup appointments.
At this moment in time, all my family knew was that I had a brain tumor, a surgeon did his best to remove as much of it as possible, I had a paralyzed arm, and eight prescriptions to pick up on the way home.