My summer craniotomy
From terror to triumph: What I did and what I learned
Before the night of May 12, 2001, I’d never heard that word. Or if I had, it hadn’t stuck in my head. But I would soon have intimate knowledge of this strange word—because a meningioma was literally stuck in my head.
Even as I type these words now, there is something unfathomable about what I’ve gone through. Yet I’ve gone through it.
It all began on the night of Jan. 26, 2001, in San Francisco. Along with a bunch of co-workers from the News & Review, I was there for the Association of Alternative Newsweeklies West conference—to mix and mingle and hopefully learn something about how weeklies work.
I went to graduate school in San Francisco, so no matter where I live, The City will always be my second home. Reveling in nostalgia, I ventured into Tommy’s Joint on Van Ness Avenue for a hot plate of pork loin and mashed potatoes for dinner, while my colleagues headed to Benihana. After a sumptuous, hearty meal, I headed north on Van Ness carrying nothing but some money and my room key. The eight-lane divided street was calm for a Friday night, and I felt safe, secure and completely at home.
I turned west on Union Street and watched stylish folks going into trendy, here-today, gone-tomorrow ristorantes, bistros and pubs. I turned north on Fillmore Street and stopped to wonder which establishments were new places, how long they’d last, and so on.
A natural foods store with a huge cement entrance stopped me in my tracks. “How odd,” I thought, as I peered through the windows to see two guys sweeping up. “Why would a business waste all this space with an inordinately large cement entryway?”
You must understand that I am in constant conversation with myself. The way it works is: One part of my brain asks, and the other responds. But this time, the question was asked, but the answer was stuck.
I was answering myself in French with “On ne sait pas,” or as I translate that phrase, “One never knows.” I felt a weird sensation on my paralyzed tongue. Though I wasn’t speaking out loud, the phrase was stuck somewhere between my brain and my mouth. I kept walking. I felt like I was about to lose my balance and veer to the left. My right hand felt numb.
My first thought: Oh my god, don’t have a seizure. In retrospect, now armed with a book-load of medical knowledge, I know I was having a seizure.
Meanwhile, I was alone on the streets of San Francisco, and the two parts of my brain were not communicating. One part was yelling for my frozen tongue and mouth to say anything. I tried my name, but I couldn’t muster the first hard “C” of Catherine. My tongue convulsed like the throat does before heaving, as if choking. I kept walking, desperately trying to say my name.
I approached busy Lombard Street. Never did I ever think I would have to ask for help. I just kept trying and trying to speak.
Finally, I said it—partially at first, then completely. I said my full name a couple of times. Relieved, I said my boyfriend’s name: Michael. I kept repeating our names as I stood waiting for the light to turn green.
When it did, I crossed the street, paying attention to my surroundings, but all the while, the conscious part of my brain was screaming: WHAT THE FUCK WAS THAT? I finally told myself not to think about it now. It was late; I was alone; I was at least 16 blocks from the hotel. “Dwell on it when you get back,” I thought. And I did just that.
I wrote the following in my journal upon my return to my room: “My brain was completely missing a beat. This has happened twice before. One night I was sitting on my bed, and it was the exact same thing: getting stuck on a French phrase. It happened the very next morning while I was on the treadmill at the gym.”
Remembering that it had happened two previous times made it OK. As scary as it had been, nothing in my 32-year-old life had changed. I kept working at the News & Review. I kept teaching two English classes at Truckee Meadows Community College. I kept spending time with Michael. I flew back to Michigan for my nephew’s birthday, and so on. As for my scary periodic inability to talk, I figured it was something that happens when I’m overloaded with thoughts—and especially when I try to speak French to myself in such a state.
It didn’t happen again until March 20, while I was running along the Truckee River in Idlewild Park. I was, as usual, thinking a million thoughts. “Here it comes,” I thought, as I felt the weird sensation on my tongue. I kept running. I didn’t lose my balance. “It will end just as quickly as it came,” I told myself. Within about 45 seconds, my brain activity returned to normal.
That was confirmation: This was something that happened occasionally when I overloaded my brain. It passed as quickly as it started. I could live with that.
Except I couldn’t.
On the evening of May 12, Michael and I were at a video store, searching the shelves for something to rent, when again I felt the sensation on my tongue, the signal that my brain would momentarily act like a broken record. I turned to Michael to say, “It’s happening again,” though I knew I wouldn’t be able to speak for about 45 seconds—but something was different this time. My entire face below my eyes felt distorted, as if I were moving my top lip and bottom lip as far apart as possible.
Michael turned to me, a look of terror on his face. He grabbed my arm. “What’s wrong?”
I woke up in an ambulance. I saw Michael through the back window, driving my car with a stoic, worried look on his face. I had no idea what was going on. As the paramedic strapped the plastic oxygen tube on my face, he asked me if I knew what day it was.
We arrived at the hospital, Michael parked and joined the paramedics and me, and I was rolled into a room with two other emergency room patients—a curtain separated us.
I don’t remember getting a CT scan—apparently standard operating procedure for someone brought in for having a seizure with no history of seizures. I just lay on the gurney talking with Michael, a sense of what the hell are we doing here? encircling us.
As Michael matter-of-factly explained the details of what he’d witnessed, I cried at the horror of the whole ordeal reflecting in his eyes.
After the CT scan, the ER neurologist on call that night came and told us the results.
There are some moments in life that are surreal, and you remember them as if you saw them from outside your body. For example, in 1990, when I called my sister in New York City to tell her that our father had died that morning.
And this night, when the doctor said the CT scan revealed a mass in my meninges, the lining of my brain. Tumors are named for the cells from which they originate; I had a meningioma. The tumor was on the left side of my brain, but the abnormal electrical activity it caused had crossed over to the right, causing my body to convulse and causing me to black out in the video store.
And by the way, he added, the frozen-mouth incident in San Francisco and the other times were seizures, too, only the electrical activity stayed on the left side. That’s why my right hand felt numb in San Francisco.
I was immediately put on anti-convulsants; I was told that my seizure would be reported to the Department of Motor Vehicles and that I would lose my license for at least 90 days; that my tumor was slow-growing; that meningioma are almost always benign; that I might not want to have it removed; that I would be getting an MRI in the morning. The surreal dream continued.
After the MRI, which takes pictures of slices of the body and is much more thorough than a CT scan, a neurosurgeon came in and further named my tumor: parasagittal meningioma, which meant it was next to my superior sagittal sinus vein (the big one) in my brain. The MRI showed the tumor dangerously close to this very important vein. It wasn’t until I saw my MRI films that the reality and the gravity of predicament hit me. This was not a bad dream I would wake up from.
The dye-enhanced film showed a white circle, as big as my eyeballs, on top of my head. It stuck out like a smaller third eye. From another angle, the swelling was visible without dye enhancement.
Since two pieces of matter can’t occupy the same space, and space inside the cranium is limited, the dense tumor displaces the soft, gray brain matter. As this displacement occurs slowly, the brain is accommodating—up to a point. Like too many bodies on a crowded subway car, everything’s fine until someone gets a toe stepped on or an elbow in the ribs. Well, my tumor was pressing on a blood vessel, causing swelling, and the blood vessel was getting impaired, getting bullied.
And I’d learn later that the meningioma wasn’t just bullying that blood vessel—it was beginning to bully my brain.
I left the hospital that day with a prescription for the anti-convulsant drug Dilantin. I began a fact-finding mission about seizures, Dilantin, meningiomas, tumor resection and so on.
Later, Michael called my mother in Detroit, and in a calm, serious voice told her he had a lot of information to give her.
She interrupted with, “Where’s Catherine?”
“Right here,” he said. Then he told her all that had happened in the last 24 hours.
My paradigm had shifted.
The next day, I walked to work and told my co-workers that I’d stopped driving because I wanted to walk to work, which was true—but they didn’t know I didn’t have a choice. I didn’t want to tell anyone at the office about the meningioma yet, because I was barely dealing with the situation myself, and I didn’t want to deal with the advice and pity that would come from telling others.
It was hard to conceive that I’d felt fine prior to May 12, yet now, I had a time bomb in my head—a time bomb that no one could guess how long it’d been ticking, nor when it was set to explode.
Meningiomas are slow-growing, so mine could have started when I was a kid. I didn’t want to be hasty in deciding to have surgery. The ER neurologist didn’t say it had to come out right away, but the neurosurgeon said he’d make time in the next few weeks to remove it. I decided to get a third opinion.
In the days before the appointment, I was taking 300 mg per day of the generic version of Dilantin. I grew progressively drowsy and started taking the bus to work, because the 25-minute walk was too much for me. I was asleep by 9 p.m. And I was getting anxious. My droopy eyes and my wobbly stance told this doctor that I was overmedicated. He tested my reflexes to confirm this. He re-prescribed Dilantin and told me not to take the generic version. Michael and I told him what had happened, and I told him about the other seizures. He recommended testing my brain waves by have an electroencephalograph (EEG).
“Watch and wait,” he recommended regarding surgery. Get another MRI in three months and see if the tumor has changed any. That was his official advice.
So I had the EEG, which revealed abnormal electrical activity around the spot where the MRI and CT scan revealed the tumor. But this doctor did not want to see my films. He held his stance: Watch and wait.
I wondered if I could stand three months with this 2.5-centimeter, more-than-likely-benign growth in my head. It’d be like walking around with a scorpion on your neck for three months, waiting to see if it stung you.
I decided to get a fourth opinion. Carrying my MRI films with me, I met Hilari Fleming, M.D., Ph.D., who put it as bluntly as possible.
She told me the three reasons to remove the tumor sooner rather than later: It was so close to that major vein (the superior sagittal sinus) and its potential attachment to the wall of the vein (making removal risky); the swelling it was causing was not going to go away as long as it was in my head; the jagged edge of the tumor was against my brain—and this indicated to her that it may be stealing blood from the next layer down.
“I love tumors,” she told me.
Immediately, I knew I wanted her to remove my tumor. I could relate to her unexpected passion, for it reminded me of myself when I tell my English composition students that I love grammar.
Still, I wasn’t ready to schedule the surgery. Despite my affinity for this neurosurgeon, I noticed a trend: Neurologists (whose job it is to monitor) are conservative, while neurosurgeons (whose job it is to cut) are more aggressive.
I got a fifth opinion. This neurologist was very friendly, but her recommendation didn’t help: “You can have surgery now or wait to have surgery.”
The sixth and final opinion came 18 days after the seizure: Charles Quaglieri, M.D., was as straightforward as Dr. Fleming had been. To sum up his recommendation: “It’s not doing anybody any good in there.”
He said normally a meningioma is like a walnut, but the edge of mine wasn’t as smooth as he’d like to see it. This corresponded with what Dr. Fleming had said about its jagged edge: It may be growing into the next layer of the meninges.
Eighteen days had passed, and I had worked myself into quite a frightened flux, but, at long last, I’d come to terms with it. But as great as it felt to figuratively exhale, I was still affected by how blue I’d turned holding my breath, wondering: What next?
After the appointment, I took the bus back to work, and within an hour, my right arm felt numb. My greatest fear all 18 days had been having another seizure. Although countless doctors assured me I wouldn’t die from having a seizure, I could hurt myself badly if I fell 5 feet, 3 inches to the ground. So I’d been staving off all odd sensations and gritting my teeth and keeping the two parts of my brain communicating for 18 days. As if I had any control over it!
The scariest thing about having a second seizure would be making the decision to lie down and let it happen. If I were alone with Michael, whose compassion was ceaseless, he’d know what was happening, but elsewhere—at the bus station or at work—I was afraid I wouldn’t be able to trust those around me not to freak out. Of course, if I blacked out, I wouldn’t have any choice. I desperately did not want that to happen.
At work, my heart raced, my right arm tingled, and I was fully panicked. Do I close the door, lie down on the floor and have a seizure? My co-workers at this point didn’t know about any of this.
I popped my head into Adrienne Rice’s office and asked if she was busy. She shook her head.
“Would you mind driving me to the emergency room?”
She jumped to her feet while I called out to the others in the office, “Adrienne’s taking me to the emergency room.”
On the way over, I told her what was going on. She was shocked. As I spoke, I kept thinking, “As long as I’m talking, I’m not having a seizure.”
When I checked in at the emergency room, my blood pressure was the highest I’ve ever known it to be. I had to force myself to breathe. I kept bursting into tears.
Once in the safe arms of the hospital, my limbs felt fine, and I slowly stopped panicking. My Dilantin level was checked. It was five points higher than the highest it should be.
I left the emergency room feeling angry. I had been walking around in limbo ever since the seizure. I’d gathered enough information to write a small book, yet the one thing I didn’t know was how I’d be after the surgery. What I knew with great certainty was that the quality of my life with the tumor was declining rapidly. If being in an emergency room was what it took it quell my fears about having a seizure, then I needed to spend some time in an operating room—and soon.
I got home and scheduled the surgery for June 12 with Dr. Fleming.
I began to relax. I showed my co-workers my MRIs the next day. I told my friends. I made sure everyone knew that it was a meningioma, a tumor in the lining of my meninges, and not a brain tumor. (One doctor told me that if I had a tumor this size in my brain, I would have had less than five years to live.)
Support and love poured at me from everywhere. Since I’d reduced my dosage of Dilantin, I wasn’t nearly falling into walls anymore. My sister, mother and 3 1/2-year-old nephew bought plane tickets.
I prepared to be away from work for three or four weeks. I had all the pre-operative blood work. By that point, I could watch them put the needle in my vein and not even flinch. I had a bleeding test, where two people cut me, and then timed the clotting of my blood. I had a chest X-ray. I peed into a cup. I had my blood pressure taken innumerable times, my pulse taken just as many. I never felt more ready for something.
My family arrived and accompanied Michael and me to the hospital at 5:30 a.m. the day of the surgery. My sister kept asking me why I was so strong. I knew it was because I was equipped with as much information as possible, and given the way I’d felt during the decision-making process, this was the right thing to do.
I was aware of all the risks involved with this surgery: death from the anesthesia, stroke or seizure during surgery. There was also some chance that I’d have transitive, mild weakness on my right side once the tumor was removed. In that case, I’d have to have physical therapy. I promised myself that if I woke up from surgery to discover that I was numb or had any deficiency, I would not let myself be afraid that it was permanent. The doctors said it would take four to six weeks to feel normal, but that the healing would go on for many more months.
I didn’t have any last-minute panic attacks, and I was smiling the morning of surgery until the last minute—when the anesthesiologist began to give me the drugs that would make me unconscious for the next five hours.
I woke up in the recovery room in a dream state (because of the anesthesia, and because I am very near-sighted and wasn’t wearing my glasses). The nurses talked to me. Dr. Fleming told me beforehand that she would come in and give me some tests, but I wouldn’t remember.
I woke up in recovery knowing I was alive. The recovery nurses were fussing over and all around me, and then Dr. Fleming came to test that I hadn’t lost any of my motor functions.
I remember that as well—it’s burned on my memory:
“Hi, Catherine,” she said.
She put her index and middle fingers in my respective hands and told me to squeeze.
I felt myself squeezing.
“Good. Now wriggle your toes.”
I wriggled my toes.
And I knew without a doubt I had no transitive, mild weakness. But my body realized that I was loaded up with drugs, and I began to gag. One of the nurses gave me a chip of ice about an inch square and an eighth of an inch thick. I let the frozen water melt on my hot tongue. Nothing ever tasted so good.
I was moved into the ICU. My left arm hurt from all the equipment on it; the catheter, once I became aware of it, was uncomfortable.
You know what, though? I was having these thoughts, and I had a big old turban on my head (my hair lay in a clear plastic bag at the foot of my bed) with a drainage tube coming out the front. I was aware of every sensation. I didn’t have a headache. I wasn’t dizzy. I could move—I squeezed my hands into fists and wriggled my toes just to make myself smile. I could think. I could see. I could feel. I was alive, and that tumor that lived in my meninges for an indeterminable number of years was frozen in a jar on its way to pathology.
That was the final frontier: the pathology.
Reno is a gambling town, and I was like the Eldorado, and the tumor like the poor sucker with the quarter at a slot machine. The odds were in my favor—big time.
I got a call in my hospital room two days after surgery and learned that the cells of the tumor were benign. I was amongst the majority.
My family and Michael came in to see me. The day of June 12 remains as square one for my life, post-tumor.
Now I realize each day is a celebration that I’m OK. Life is soooo good.