Perhaps some of you remember those old PSA’s from years ago – the one with the skillet on the stove? The VO says, “This is your brain.” An egg then gets cracked into the sizzling skillet. The VO says, “This is your brain on drugs. Any questions?”
Well, I’m not on drugs, but I’d like to write about my brain on no insurance.
On November 17, 2004, I had just gotten back to my desk after lunch and was getting ready to dig into my afternoon’s work, when I noticed my left eye twitching. I rubbed it a little, thinking it was just a little tic and it would stop. It didn’t. It kept twitching, and then, the left corner of my mouth started twitching as well, and before I knew it, my whole head and left arm were twitching and jerking uncontrollably. I knew exactly what was happening to me – I was having a seizure, I was completely terrified and I had absolutely no control over my movements.
I heard myself making these rasping “uh…uh…uh…uh” noises, and I watched strings of drool swinging madly back and forth and then falling from my mouth and onto my blouse. Tears ran out of my eyes because I was so terribly frightened by what was happening to me.
“I have cancer! I have a brain tumor! I’m going to die!” – all those thoughts made a mad dash through my brain as the seizure continued to escalate.
I don’t know how long the seizure went on. It felt like forever, but finally, it stopped. I took several kleenexes out of the box on my desk, wiped my mouth, dried my tears and attempted to blot the saliva off my blouse. I was exhausted, so I put my head down on my arms and closed my eyes.
I still remember the thought processes that went through my mind as I rested my head on my folded arms that day. My first thought was that if I reported that I had had a seizure, they’d take my driver’s license away and I wouldn’t be able to get around. My second thought was that maybe I shouldn’t report it or call a doctor – that maybe it was a freak one-time occurrence and it wouldn’t happen again. My third thought was that no, not reporting the seizure was not an option, because I knew that there was a reason I had had a seizure; it could be a tumor, or it could be something else wrong with my brain – and that by not reporting it, I could be sentencing myself to death.
All these thoughts rushed pell-mell through my head; it must have only taken moments before I raised my head and called out to the attorney who was sitting in the office about 20 feet from my own. He habitually was so deeply involved in his work that he rarely noticed anything outside his office – and that day, he didn’t notice me, shaking like crazy, slinging drool and grunting like a chimpanzee at the zoo.
He did, however, hear me when I called out and told him that I had had a seizure.
That’s when the madness began. He called the front desk, who called 9-1-1 and called one of the nurses who worked in our claims department. One of them immediately came over to my desk; she was one of my friends, and she comforted me while she took my blood pressure – which was, unsurprisingly, sky-high. She stayed with me until the paramedics came to take me to the hospital.
It was probably a silly thing to worry about, considering what was going on at the time, but the thought of being strapped to a gurney with paramedics rolling me through the corridors of my office with everyone staring at me was something so acutely embarrassing that I refused to ride on their gurney. I walked out to the ambulance on my own two feet. People stared, but somehow, walking out with the paramedics wasn’t so bad.
It was a short ride to the emergency room at Kaiser. I remember sitting in the exam room waiting for the doctor, when I had another, more violent seizure. At the time, I wore hard contact lenses, and I was afraid that they were going to give me a drug that knocked me out, so I attempted to communicate with the male attendant (I don’t know if he was a nurse, an orderly or an intern or what) who was with me by tapping on his arm with my right hand, and then indicating my eyes. I did this multiple times, but I wasn’t getting through to him. (Just so you know why I attempted to communicate this information so strenuously, closing your eyes and/or sleeping with hard lenses in your eyes can cause serious and painful problems.) This guy thought that my motions of tapping on his arm and then indicating my eyes were part of my seizure. Maybe that should have been a clue as to what was going to happen next - I still have nightmares about it.
The seizure continued; it was both longer and more violent than the one I had already had, and the attendant who was with me actually attempted to push me down flat onto my back on the gurney. As before, during this seizure, I couldn’t speak, nor could I cough or control any of my facial or throat muscles. When the attendant put both his hands on my shoulders and tried to force me to lie down on my back, my mouth and throat filled with saliva and I couldn’t breathe. I fought him like a madwoman because I was seconds away from choking and/or drowning in my own spit. Finally, I fought my way back to an upright position, and what looked like two cups of drool poured out of my mouth and cascaded down my front and I was able to take a breath.
I remember being furiously angry with that guy – even I, with my most basic knowledge of first aid, know that the very first rule of dealing with a person who is having a seizure is that you lay the person down on their side with their head turned to the side. You absolutely do NOT put that person flat on their back, because – as it happened to me – a person can choke, or even drown on their saliva. I’m sure daggers were shooting out of my eyes at that guy, so it didn’t surprise me that when the seizure stopped, he beat a hasty retreat as the doctor came in to examine me.
I answered a few questions about what had happened to me, and then I told the doc about my contact lenses. He told me not to worry, that they weren’t going to knock me out. He told me that he was going to put in an IV with an anti-seizure medication, Dilantin, and I was to have a CT scan. All this happened in short order. The IV was put into the back of my left hand and taped down, and I sat for a while in a room while they waited for the medication to take effect. Then I was wheeled down to the CT scanner, where I sat on my gurney in the hallway for about 15-20 minutes waiting for the tech.
All this time, I was alone, and I was absolutely terrified. I had no idea what was happening to me, and the things I thought about that it could be weren’t at all comforting. A nice lady said hello to me.
Finally I had my CT scan. A doctor came to see me afterwards, who introduced himself as Dr. J, my neurologist. He told me that I had a brain tumor on the right side of my brain, and that I needed an MRI in order to make a more complete diagnosis. I had never had an MRI before and didn’t know what to expect. He told me that I would be inside a big tube which would take pictures of my brain. I asked him how long it would take, and he told me that it would take about 20 minutes.
So once again, I found myself on a gurney being rolled through the halls of the hospital to the MRI lab. I was asked to lie down on this narrow “bed,” then given earplugs to put in. My head was put into a U-shaped cradle, and a grid-like mask was fitted over my face so I couldn’t move. The bed then was rolled slowly into the large tube – about the size of your standard sewer pipe – and the MRI began. I don’t know if you’ve ever had an MRI, but it’s not a pleasant experience. The machine makes a horrendous amount of noises that I likened to Satan’s heavy metal rock band, with loud twanging, clicking, rumbling, buzzing and thumping that went on and on. After what seemed like forever, one of the techs injected something into the IV in my hand. I felt an immediate rush of cold up my arm, and the infernal thumping, banging and twanging started all over again.
About 45 minutes later, it was over. The doctors told me that I was being taken to another hospital for further testing, so I was once again put in an ambulance and taken to Encino Hospital. By this time, it was around 4:00pm. Once I was in my new room, another technician came to see me. She told me that she was going to do an EEG, so she proceeded to take a small metal instrument and scratched about a dozen places on my scalp – enough to break the skin. She then smeared a dab of goo on the sore spot and attached an electrode to each of the painful scrapes in my scalp and turned on the machine. After about 15 minutes of this, she removed the electrodes, leaving my hair both greasy and bloody, and left. At that point, I called my friend, and he told me he was on his way to be with me. I asked him if he could bring me something to eat, as it was getting late and I was hungry.
At this point, Dr. J came to see me again. He told me that he had checked out my MRI and my CT scan and had given them to a neurosurgeon, Dr. F, who was going to be coming to see me later. He asked me if I had any questions for him, and I told him that I was unhappy with the fact that the very first thing he had told me (with regard to the MRI) had not been the truth. He had assured me that the MRI was going to last about 20 minutes, when in fact, it was more than twice that. I tried to explain to him that it was very important to me that my doctor be truthful with me, but Dr. J wouldn’t listen.
Dr. J got very angry with me, and rather than answer my question or reassure me, he spat out that what I had was most likely a cancerous tumor in my brain that had metastasized from another cancerous tumor (or tumors) somewhere else in my body. He then abruptly turned and left the room, leaving me sitting there with my death sentence in my lap.
I sat there, too stunned to cry. I was going to die. My life was over. I was going to die a slow and painful death of cancer. At this point, my friend arrived and I finally burst into hysterical tears. Finally, exhausted and cried out, I drank the chocolate milkshake he had brought me. We sat together and I stared numbly at the television.
Around 10:00p.m. Dr. F (my neurosurgeon) came to see me. I was a basket case, waiting to hear his confirmation of my death sentence. Instead, he told me that my tumor was a small benign tumor called a meningioma. The closest analogy to this type of tumor, he said, was that it was like a wart on the skin of my brain. It was about the size of a hazelnut, and it wasn’t actually inside my brain. It was on the outside “skin” of my brain (the meninges), and the pressure of the tumor had caused the two seizures I had had. He told me that he could take it out, and that I would almost certainly recover completely.
He told me that he wanted to do some additional tests to confirm his diagnoses, but I was so overcome with emotion I didn’t hear what he said. I wasn’t going to die! That’s all I heard. I wasn’t going to die.
Once I stopped crying again, he repeated that he was ordering other tests to confirm his diagnosis, so over the week that followed, I had several other tests: a chest X-ray and a bone scan, just to rule out any tumor or cancers anywhere else in my body. I think the worst thing about that week, aside from Dr. J telling me I was going to die, and the cliche of the crappy hospital food, was being hooked up to several machines constantly (I was being monitored by the nurses at the nurses’ station to make sure I wasn’t having another seizure) – which meant that I was not allowed to shower.
I still had the gooey ointment and blood in my hair from the EEG, and I had not been allowed to shower for 3 days. Finally, I rebelled. I demanded to be allowed to take a shower, so they grudgingly removed the electrodes and wiring from my body and gave me a small bottle of shampoo, a bar of soap and a washcloth and let me take a shower. I think that was the best shower I have ever had.
After five days, I was allowed to go home. I had been given several different medications to take to prevent seizures, and I was forbidden to drive. I had an appointment with Dr. F, in which he scheduled my craniotomy for December 1, 2004, approximately two weeks away. I asked dozens of questions. Dr. F got annoyed with me and told me that I should be quiet and let him talk. I looked him in the eye and I apologized for asking so many questions, and I told him that I was the only person I had to take care of me, and I needed to ask them, because I had nobody to ask these questions for me. He was taken aback for a moment, and we went on from there.
It wasn’t a very cheerful Thanksgiving that year, although my thoughtful friends brought me lots of food and spent time with me. I had several meltdowns during that time, as I had been on my computer googling “meningioma” and reading horror stories of patients becoming blind, paralyzed and other things because of their tumors and their surgery. The biggest meltdown I had was the night before I was supposed to go to the hospital for my surgery, because I had gotten a helpful brochure from the National Brain Tumor Foundation in the mail that morning, telling me that after my surgery I could wake up blind, paralyzed, with no memory and/or be unable to speak, read or write, but a friend talked me through it.
December 1st rolled around, and my friend took me to the hospital for my surgery. I had packed a small bag with some pj’s, my ipod, a robe and other small items. When I got to the hospital, I got into my lovely backless gown and into bed. I hung on to the book I was reading, Diana Gabaldon’s “A Dragonfly in Amber” to keep me company as I waited. Finally, they came to take me to surgery. I said goodbye to my friend and ended up once again parked on a gurney in a waiting room. They put in my IV and left me to my thoughts.
A little while later, Dr. F bounded in, full of energy and started speaking to me very rapidly about what was going to happen. I was too frightened to listen, so I asked him to give me his hand. He looked puzzled, but gave me his hand. I took it in both of mine, looked into his eyes, and told him, “My name is Kate. I have 4 cats. I like football, reading, chocolate and shopping. My favorite food is ice cream.” He looked at me like I had lost my mind, and I told him that the reason I had said those things to him was that I wanted him to see me as a person – not a tumor or a head to be opened. Poor Dr. F. I didn’t make it easy for him. He nodded and told me that he’d see me after surgery.
I was wheeled into the operating room. I remember it being cold and remember the bright light – but that’s it. The next thing I knew, I opened my eyes and I was in the recovery room. My head was swathed in bandages, but nothing hurt. Quickly, I wiggled the toes on both feet, wiggled all my fingers, and then I recited the alphabet and the multiplication tables to myself – and was considerably relieved that I had all my faculties. I was taken to intensive care, where it seemed that I was hooked up to a dozen machines. I had pressure sleeves on my legs that inflated approximately every thirty seconds – enough to painfully squeeze both legs. I had an IV hooked up to my right hand, and my arm was taped to a splint. I had more electrodes attached to my chest, side and shoulders, all of which had wires feeding to a machine that monitored my blood pressure, heartbeat and other things I didn’t recognize.
That was a long night. Because of the pressure cuffs on my legs, I really couldn’t sleep. There was a lovely male nurse in the ICU who took very good care of me that night. I was incredibly thirsty, so he brought me pitcher after pitcher of ice cold water. I realized that I had also been catheterized – and that meant I could drink as much as I wanted and that I would not have to either get out of bed to go to the bathroom or use a bedpan. And that cold water tasted so good that I polished off almost three full pitchers of it. He also brought me some fresh cold egg custard, which was delicious.
In the morning, Dr. J came to see me. He put on his best bedside manner and asked “And how are we this morning?” I let him have it – I told him that I was fine – no thanks to him. He sputtered and growled at me, and told me that I should be “grateful” to him, to which I replied, “You told me that I was going to die – you’re FIRED!” He glared at me, muttered something I didn’t catch – and stomped off. I saw Dr. F and a couple of nurses over at the nurses’ station look at each other, and I swear I saw a couple of smothered grins.
After a day in the ICU, I was taken to a normal post-surgical ward. I still couldn’t get any sleep, because that place was ridiculously noisy! They were putting up Christmas decorations in the halls at 9pm, and worse, there was a woman in the room next to mine who broke my heart. She was evidently in a great deal of pain, because I could hear her groaning and moaning continuously throughout the night. I asked one of the nurses if there was anything that could be done for her, and she told me no.
I had to get out of there! So the next morning, when Dr. F came to see me, I asked him if I could go home. He told me that if I could walk down the hall, down and back up one flight of stairs without incident, then I could go home. My response to that was “get out of my way!” He and a nurse trailed me down the hall and the steps and back to my room, where he told me that I could go home. I called my friend to come pick me up, and about 2 hours later, I was home. Of course, the first thing I did was remove the bandages on my head to see my incision. The second thing I did was say a few dirty words while I tried to shave off the accidental mullet my surgeon had left me with. I discovered that I actually liked how I looked with no hair.
My recovery was swift and complete. I had several followups with my new neurologist, Dr. A, who was wonderful. She pronounced my recovery to be 100%. I went back to work in February, 2005, and in March, my driver’s license was returned.
Since my surgery, I have had a routine MRI and an appointment with Dr. F every year to make sure my tumor hasn’t returned. I always have some trepidation when facing the procedure; the tumor could grow back. The odds are against it, but still…
This year, it is once again time for my annual MRI. But, unlike years previous, this year I have no health insurance and I’m currently on disability, which barely pays the bills. My doctor was kind enough to recommend an imaging center. I called them and asked them what the cash price would be for my MRI, a brain scan with/without contrast. The price? $750. I don’t have $750, and I simply cannot afford to pay that much all at once out of my disability check, because how would I pay my rent?
I could have a tumor, but because I have no insurance, I simply cannot afford the procedure to make sure I don’t.
This is my brain on no insurance.