This piece is a book excerpt from Diagnosis Female: How Medical Bias Endangers Women’s Health by author Emily Dwass.
I couldn’t slide my right foot into a flip-flop.
It was June 2005, and I was rushing around, helping my daughter get ready for the senior prom. I thought that I had slipped into the flip-flops by the front door as I hurried to my car in the driveway, but something felt wrong. I looked down and saw that my right foot was bare – the strap on the sandal must have snapped. But when I went back to retrieve the errant shoe, that wasn’t the case. It seemed that the problem was not with the flip-flop, but with my suddenly funky foot.
I didn’t make too much of this. I had been having weird neurological symptoms for nearly four years, mostly tingling and numbness in my arms and legs. When these symptoms first started, my primary care doctor diagnosed Guillain-Barre syndrome, an autoimmune disease that attacks the nervous system. He referred me to a neurologist at West Hills Hospital in the San Fernando Valley. That doctor examined me and said I had a Guillain-Barre-like virus and that I would recover in a few weeks.
When that didn’t happen, I went for another opinion with a neurologist at UCLA. He agreed with the original diagnosis.
“Should I have some kind of tests?” I asked.
The doctor chuckled and said something along the lines of: “I could order all kinds of tests and have you spend lots of money, but it’s not necessary.”
I didn’t protest. After all, he was the highly regarded physician. And I grew up in an environment when patients, especially women, would never question a medical professional. Plus, I’ve always hated going to the doctor and any kind of medical procedure. Seriously, I get nervous at the dentist for a routine cleaning. So, if two neurologists were telling me that I would get better without intervention, I was more than happy to believe them. Besides, life was busy, with two teenagers, a husband who had a high-stress job, in-laws and extended family who visited several times a year, and a writing career that demanded many hours.
And eventually, I honestly couldn’t tell if I was better or if not feeling right had become my new normal. At one point I wondered if what I was experiencing might be menopause. I called my mother-in-law to ask: “Do hot flashes feel like tingling in your limbs?”
“No,” she said. “You actually get hot during a hot flash.”
So I carried on, a somewhat altered version of myself, until the day I ended up minus one shoe. My husband, Stu, urged me to check back in with the UCLA neurologist. As it happened, I recently had had an inconclusive mammogram and ultrasound and had scheduled a follow-up appointment at the UCLA Breast Center. Stu took the day off of work to accompany me. As long as we were going to be on campus, I took his advice and made an appointment with the neurologist, to discuss this new symptom.
After I described my flip-flop malfunction, the doctor had me sit on his exam table and close my eyes. Then he manipulated the toes on my right foot and asked whether the digits were up or down. I had no clue.
“Have you ever had an MRI?” the doctor asked.
Within the hour, I was taking my first ride in an enclosed, metal tube. The technician asked what kind of music I wanted to listen to – a pointless question, I soon learned, because the exam was so noisy that it was impossible to hear anything but the clamor of the machine.
When the test was over, we met a friend for lunch, which left me feeling queasy. Most likely, the nausea came from the contrast dye used in the imaging, but I was then an MRI virgin and didn’t know that reaction was possible. After lunch I headed to the Breast Center for my appointment. A physician’s assistant went over the mammogram and ultra-sound and assured me that everything was fine – proving my theory that the thing you’re worried about usually is not the thing that you should be worried about.
Suddenly, my pager began to blow up (this was before we all had cell phones). I looked at the number and saw it was the neurologist. He wanted me to return to the imaging center pronto for an additional scan. Then I should bring the discs back to his office. It was already late in the day, but he would wait.
We high-tailed it back to the imaging center, and by high-tail I mean we slogged through Wilshire Boulevard rush hour traffic. As soon as I checked in, they hurried me to the exam room, where I again was placed in the MRI machine. This time, no one asked what kind of music I favored.
About halfway through the exam, the technician came into the room. “So, um,” she said. “Do you get a lot of headaches?”
“No, I never get headaches,” I answered. “Why, what do you see?”
She backed up toward the door: “Oh, um, why don’t we let the professionals answer that.”
She bolted, and the clanging and banging of the MRI machine resumed. Two thoughts crossed my mind. One: Technician, work on your subtlety skills. Two: I am so screwed.
Back in the neurologist’s office, we sat silently by his computer as he inserted the discs and waited for the information to download. Images of my brain appeared and there, at the top, was a large, white circle. I’ve always been a terrible science student, but even I knew that blob probably wasn’t supposed to be there.
The doctor clicked on different views and said I most likely had a benign meningioma, a tumor that forms on the membranes covering the brain and spinal cord. It was a word I had never heard before. It would require surgery. He added that there were going to be some challenges. For starters, the tumor was very big, roughly the size of a baseball. And it had become entangled with a major artery supplying blood to the brain.
“You want to get someone good to do this,” he said.
Looking back, in addition to the concern in his eyes, I think there was something else – worry. As in, worry that I was going to sue him for malpractice. After all, I had been his patient for more than three years and he had not ordered an MRI exam until that day. But, that afternoon, anger wasn’t an emotion I was experiencing. Terrified would be a more accurate description of my state of mind. Also, I had always thought this doctor was competent and caring, and I trusted that he would guide me through this crisis.
I no doubt was experiencing psychic shock. What I remember most clearly was how surprised and relieved I was to hear the word benign. I had always assumed brain tumor meant cancer. I also was stunned at how large the thing in my head was. I wondered – how long had this tumor been growing undetected?
Before we left, the neurologist walked me over to his assistant and asked her to arrange appointments with two prominent Los Angeles neurosurgeons: one at UCLA and a second, Dr. Keith Black at Cedars-Sinai Medical Center. The assistant made a joke about wanting to deliver my chart to Dr. Black in person. I was too dazed by the events of the day to process what she was saying. The neurologist explained that Dr. Black is considered to be very handsome.
At least there was that to look forward to.
Two days later we were back at UCLA to meet with the first recommended neurosurgeon. The appointment was scheduled for 2:30 p.m., but we sat in the waiting room until close to 4:00 p.m. When my name finally was called, we headed to his exam room. As we approached the door, it opened, and a woman came out, accompanied by a man and a young boy. She was sobbing inconsolably.
We entered the room. The doctor was sitting in front of the scans of my brain, which were displayed on a light box. My husband and I sat down, facing him. He leaned back in his chair and looked at us with what I can only describe as a sneer. There was a long, awkward silence.
Finally, staring at the ceiling, he spoke, sounding incredibly bored, as if this was all a nuisance: “What do you want me to tell you?”
It was a startling question, asked in such a rude way, that I’m pretty sure my jaw dropped open. Stu calmly responded, “We’d like you to evaluate Emily’s MRI and hear what treatment you would recommend.”
The doctor looked at the MRI and turned his attention to me.
“We’re going to cut your head open like a pumpkin, take off the top, put it over here, take out the tumor, and put the top back on.”
As he spoke, his hands mimed the activity of carving open a pumpkin and removing the top.
My older sister, who is a nurse/midwife, had warned me that some neurosurgeons have strange personalities. But this was more than just bad bedside manner – here was a doctor in a position of power being deliberately cruel to a vulnerable patient. Looking back, I’m certain he would not have addressed a male patient in such a cavalier manner. My husband pressed the neurosurgeon for specifics, while I sat silent and stunned. At one point, the doctor commented on how many questions my husband was asking.
“Occupational hazard,” my husband replied.
“What do you mean?” the surgeon asked.
Stu explained that he was a reporter for the Los Angeles Times. This got the doctor’s attention. There was an immediate shift in his demeanor. He bragged to my husband that he recently had had dinner with a top suit from the paper. And he stopped comparing my head to a squash.
Then he began to discuss my surgical options in a serious and respectful manner. In his view, I would need two operations. The first would be to deal with the artery that was tangled up in the tumor, to prevent a major hemorrhage. The day after that procedure, a craniotomy would be performed, to remove the tumor.
He wanted us to sign up on the spot, but my husband said we were planning to get a second opinion from another neurosurgeon. The doctor guessed that we were headed to Cedars-Sinai – without naming names, he began to bash the surgeons there. It was shocking – as well as inappropriate and unprofessional.
My head was spinning, and I was feeling scared, desperate, and hopeless. I couldn’t wait to get out of there.
A few days later we went to Cedars-Sinai. As we entered the waiting room, Stu suddenly said, “Hey, Oprah!” He pointed to a large plaque on the wall, listing donors to the Maxine Dunitz Neurosurgical Institute. One of the names was Oprah Winfrey. I had always admired her. Seeing her name on the plaque gave me a lift – I figured this was a good omen.
I checked in and was informed I would need to pay a facility fee, which would not be covered by insurance. This was my first encounter with such a charge. Being already dazed, I didn’t quite get what the fee was for, but I paid up, then went to the restroom – where there was no toilet paper. Clearly, the facility fee didn’t cover the facilities.
A few minutes after I returned to the waiting room, a physician’s assistant escorted us to an exam room. She explained that Dr. Black was reviewing my scans and would be in shortly. When Dr. Black came in, I liked him right away. He had a pleasant manner and was able to translate the complex medical situation into terms I could grasp. He explained that the tumor was too big for radiation treatment and that surgery was the only option. This was the first time I understood that, if the tumor had been detected at an earlier stage, surgery might have been avoided in favor of radiation. Again, I wondered – how long had this mass been growing undiagnosed?
I asked Dr. Black about the two-part surgery that the UCLA doctor had recommended. Dr. Black emphatically said “No.” In his opinion, this would put me at risk for a stroke. He said the problematic artery would be dealt with during the craniotomy.
Minutes into the consult with Dr. Black I knew that I wanted him to do the surgery. In addition to his stellar reputation, he had just the right combination of confidence and compassion. Most of all, he made me feel hopeful that I could get through this health crisis in one piece and eventually would be able to return to my normal life.
I asked Dr. Black how long I would be out of commission after the surgery. He said it would take about a month to recover. Also, because the tumor was on the motor strip for my right foot, I would need physical therapy to relearn how to walk.
Calendars were consulted and I was told I could have the operation the very next week, or in six weeks. Usually, I would want to get something I’m dreading over with as soon as possible. But this time, I chose to delay. My rationale for doing this can be explained in four words: Bed, Bath & Beyond.
Our daughter, Amy, was leaving soon to start her freshman year of college, and I had been looking forward to doing the dorm shop-a-thon with her. We had amassed a huge pile of coupons, with which to fill a shopping cart with all the necessities. If I had the surgery right away, I wouldn’t be able to help her get ready for school. So the surgery was scheduled for six weeks out.
In addition to helping my daughter prepare for college, one of my daily activities during this pre-surgery time was a little game I thought of as: “Let’s Call the Insurance Company and Ask How Much I’m Going to Pay.”
Here’s how it worked: Every day I would ask a customer service representative if he or she could please give me an estimate on how much my co-pay for the surgery would be. After all, anyone who’s ever been in a hospital knows that it costs roughly $100 every time you pee. So I was curious.
Each time I called I got a new version of my benefits. One of my favorite conversations went like this:
Customer Service Rep: “You need to make sure that everyone who touches you in the hospital is part of your plan.”
Me: “I’m going to be unconscious for more than five hours. How’s that going to work?”
Customer Service Rep: “It is still your responsibility.”
I knew I was fortunate to have good health insurance, thanks to my husband’s job. I also knew that I would never again be able to purchase health insurance, because I now had a monster of a preexisting condition. This fact led Stu to leave a job he loved in 2008, when the Los Angeles Times was on shaky financial ground and offering buyouts. He decided to take what was rumored to be the last buyout that would allow employees to keep paying for the company insurance plan. This was before the Affordable Care Act, which gave people like me the right to buy health insurance.
I never did get an accurate estimate of the surgery cost and eventually I stopped caring. My head was in a weird place, no pun intended. It reminded me of postpartum depression, except this was precraniotomy depression. The hardest part was announcing my bad health news. I started to dread the ringing of the phone.
“I hear you have a tumor!” began one call from a well-meaning relative.
It was difficult for me to tell even my closest friends. And I certainly did not want to tell people I was working for, especially in the entertainment industry. Over the years, in addition to being a freelance journalist, I’ve written and sold a few scripts. For the most part, this has been fun, as well as a way to help both our kids graduate from college debt-free. In the months prior to my surgery I was working on a script with a small production company. I meant to tell the producers that I was about to have my head sawed open, but I just couldn’t think of how to work it into the conversation. Plus, everyone knows you can’t be old or sick in Hollywood, especially if you’re a woman – and now I was all three. Looking back, I probably could have just let slip that I was having “work done” at Cedars-Sinai and no one would have blinked.
As the surgery date approached, I focused on getting the house in order and cooking food for the freezer, sort of like the nesting you do before having a baby. I’ve saved all my desk diaries through the years. That month I composed a detailed to-do list containing twelve items, four having to do with laundry, including “ironing.” Ironing? Really?
At night, the reality of what I was facing would hit me. Our son, Josh, a recent college graduate, had moved back home to help out. He is the funniest guy I know and always makes me laugh, no matter what is going on. Every evening after dinner, Josh, who now is a television comedy writer and producer, would take a look at my face and comment, “Time for Mom’s meltdown.”
A week before the surgery I went for a physical at Cedars-Sinai. The nice internist doing the exam asked if I drank alcohol. “Not really,” I answered. His joking reply, “Maybe you should.”
During the appointment a compassionate nurse gently explained what would happen before, during, and after the operation. She gave me a giant three-ring binder titled Information for Patients Undergoing a Biopsy or Craniotomy for a Brain Tumor. Every time I opened the binder, I started to panic. In fact, it is only recently that I’ve been able read it all the way through.
Coincidentally, the wife of one of my husband’s friends and colleagues at the newspaper had recently had meningioma surgery at Cedars-Sinai, with Dr. Black’s team. Her husband sent word to Stu that I could call her, which I did. Her surgery had gone very well. In fact, she traveled to Europe a month after the operation, which was great to hear. She gave me some good practical advice, such as: if I colored my hair (yes), get it done before the surgery, because I wouldn’t be able to do it for a while after. And she also offered this comforting overview: I was going to be treated by some of the best neurosurgeons in the country, and they were going to take great care of me.
When we hung up the phone, I looked at the clock and was mortified to see that I had kept her on the line for nearly an hour. To this day I still remember and appreciate her kindness and patience with my many questions.
The day before the surgery I went to Cedars-Sinai for a specialized preop MRI, intended to give the doctors a detailed road map of inside my head. Little circular markers called fiducials that resembled Life Savers candies were affixed all over my face; I had to keep them in place and not get them wet.
When we got back home late that afternoon, we discovered that the air conditioner had decided that this was a good day to stop working. Outside, it was over 100 degrees, normal for August in the San Fernando Valley, and inside it was even hotter. I hoped sweaty fiducials were not going to present a problem. All I could think of was that I would be recovering from brain surgery in a steaming house.
I called a repairman we had used once before and begged him to come out the next day. I explained that I would be having surgery, but we would leave a door open for him. He did come out and fix the air conditioner, and he never charged us a penny. I’m including this information in case you believe there are no decent people left on earth.
I didn’t even bother trying to sleep that night. I emptied the dishwasher and then gave myself a pedicure. I wrote a letter to my husband and kids, as well as a medical directive, giving the doctors permission to donate my “good parts” if things didn’t go well.
Early the next morning, we drove to the hospital.
The neurosurgical waiting room was bustling with patients and their families. When patients’ names were called, volunteers escorted them out. A white-haired, grandmotherly woman with a thick accent came to get me. She waited while I hugged my family. Then she took me by the hand. For an elderly woman, she had a surprisingly strong grip. I wondered if perhaps someone had tried to run away at this juncture. There was a door beckoning with an “Exit” sign. I could see out the large picture windows to the street below, where pedestrians were starting their days. I desperately wanted to join them, especially the people heading for coffee.
I was delivered to a preop area. A nurse gave me a gown and a bed. An anesthesiologist appeared. He examined my arms and scowled, clearly annoyed that my veins were not cooperating. Give me a break, I thought. I haven’t had anything to eat or drink since midnight. Eventually, he found a vein that worked and he hooked me up to an IV. As I was wheeled off to the operating room, the magic potion kicked in, and I felt fuzzy and relaxed.
The operating room was abuzz with bright lights and lots of activity. I recognized Dr. Black and was happy to see him.
“Hey, Dr. Black!” I exclaimed in a cheerful, goofy way.
He gave my shoulder a firm, friendly squeeze. I appreciated that gesture – something about it was so reassuring.
This was my first surgery. I had heard that when you wake up it seems as if no time has passed. That was the sense I had when I suddenly became aware of a voice calling my name. As I came to, Dr. Black was there, saying, “You’re cured.”
I must have quickly gone back to sleep. When I opened my eyes again I was in a recovery room with other patients. Nearby a man was groaning, in terrible pain, from back surgery. Across the way, doctors and nurses were working on a woman, another brain tumor patient, who appeared to be in serious trouble. “We need to intubate,” I heard someone say. There was a flurry of activity until she was stabilized.
I dozed off, and when I woke up my family was there. I was surprised to learn it was late afternoon. I asked them what they had eaten for lunch. They told me about the friends who had sat with them in the waiting room.
I was feeling great! As I was wheeled to my room, I threw up all over everything. The nurses assured me this was normal, most likely a reaction to the motion, the anesthesia, the pain meds, or the fact that the inside of my head had been rearranged.
A cot was provided so my husband could stay with me. I was cleaned up and squeezy things were wrapped around my legs, to prevent blood clots. The real name is intermittent pneumatic compression devices – basically, they are leg coverings that inflate and deflate with an air pump.
I was given steroids, to reduce brain swelling, as well as a choice of pain meds. I’ve always been sensitive to medications, and I was worried that anything heavy-duty would make me vomit again, so I opted for Tylenol.
Surprisingly, there wasn’t a lot of head pain – mostly pressure. The Tylenol didn’t really relieve this, but I stuck with it, anyway. Because too much acetaminophen can cause liver failure, the nurses were very careful with the dosage.
I can’t say enough about how wonderful the neurosurgical nurses were. While a surgeon can save your life in the operating room, it’s the nurses who keep you alive once you are wheeled out. Not only did they take great care of me, but they also cared for my husband – during the night he developed an itchy rash from the high-octane detergent used to wash the sheets. Whenever the nurses came in to check on me, they examined him, too, giving him different ointments to relieve his itching.
I only was scheduled to spend two nights in the hospital. During the second night, I was hungry and was offered Jell-O. As soon as I finished the small cup, I began to feel weird shaking through my body. This intensified, until every muscle, from head to toe, was having uncontrollable, violent spasms.
Naturally, this occurred at 2:00 a.m., when the doctors patrolling the floor were new-arrival interns. A posse of them stood by the bed and watched me shiver and shake. They clearly did not want to wake the attending physician, who must have threatened them with physical harm if they interrupted his nap. After observing me for a while, the leader of the pack intoned, “We don’t know what’s wrong, but we think it’s all in your head.”
He wasn’t trying to be funny.
My nurse speculated that the steroids were causing the muscle spasms. I actually thought it was the combination of the sugar from the Jell-O and the steroids. Eventually the shaking stopped. The next day, when I had one spoonful of pudding with lunch, I immediately felt small muscle flutters again in my stomach. I stopped eating sweets while on the steroids, although no one else bought my sugar-steroid hypothesis.
Because of this episode, I had a chest X-ray and an MRI, both normal, and was kept in the hospital for an additional day. I was examined several times by Dr. Black and other members of his team, who cleared me to go home three days after surgery.
I was sent packing with a cane to help me walk. At first, even that aid wasn’t enough. Stu had to practically carry me from the car into the house. It was great to be home, but I had three immediate concerns: food, coffee, and hairy legs.
The first problem was solved by our loyal and amazing friends, who brought over delicious meals to get us through the first few weeks. Morning coffee was another hurdle. I’ve always been an early riser, and a latte is how I start the day. I’m a fuss-budget in the kitchen, starting with that first cup of coffee. I like it brewed a certain way and I want the milk foamed just right. My husband had been by my side through this whole ordeal, and I didn’t want to burden him now with having to learn how to make my coffee. Also, the guy can’t cook. His mother, may she rest in peace, had amazing culinary talents, but she never shared those skills with her two sons. I’ve known my husband for more than forty years, and in all that time, he’s cooked dinner once. It was while we were dating, when he threw some brown rice and veggies into a pot. We affectionately refer to this as his seduction dinner.
If I wanted my morning latte, I was on my own. One hurdle was getting downstairs. By grasping the wall and bannister, and by going very slowly, I could make it to the first floor, where I collapsed onto the living room sofa. After I recovered from that trek, I used the cane to go into the dining room, where I took hold of a chair and used this as a walker to get into the kitchen. There, I was able make coffee and foam the milk. When I got tired, I could plunk myself down in the chair. Problem solved.
Hairy legs were another issue. One of the directives in the recovery packet was not to lower my head for a month. It’s hard to shave your legs if you can’t put your head down to see what you’re doing. I asked our daughter, Amy, to help me out for a few weeks, until she left for college. I figured she owed me – for the first three years of her life she had been permanently attached to my legs. When she was a toddler, if I left her for three minutes to go into the bathroom, she would collapse in a puddle of tears. (She grew up to be the most independent young woman I know. She’s now a fearless investigative journalist.) When I asked her to help me out with my hirsute limbs, she thought it over and responded, “Okay, but only below the knees.” Fair enough.
A week after the surgery, I had an appointment at Dr. Black’s office to have the stitches removed. I still was unsteady on my feet, so we arranged for a wheelchair. In the doctor’s office, a physician’s assistant had me move to a regular chair, rather than having me lie down on the exam table. This was an educational moment for both of us. The lesson we learned: It’s probably not a great idea to have someone fresh out of brain surgery to sit upright for an extended period of time while stitches are removed.
A few minutes into the procedure the room started to spin.
“I think I’m going to pass out,” I calmly announced, which I then proceeded to do.
When I came to, I was face-to-face with a very handsome EMT. (Question: Why is every firefighter and EMT in Los Angeles so good-looking?). He wanted to know if I had peed myself. I did a quick inspection and determined that I had not. If I had, that could have been indication of a seizure.
I was carried off, put in an ambulance, and driven around the block to the busy Cedars-Sinai emergency room. Once I was settled in a cubicle there, a friendly nurse took down all of my information. When he heard that I had had surgery the prior week with Dr. Black, he said: “Dr. Black is amazing. He can remove half your brain and you’ll still be fine.”
An ER doctor checked me out and said that I had fainted, most likely due to something called the vasovagal reflex. This was my first experience with fainting. I learned that the large vagal nerve descends from the spinal cord and has nerve endings throughout the body, including the neck, chest and abdomen. It is part of the autonomic nervous system, which regulates heart rate and blood pressure.
“The vasovagal reflex is mediated by this nerve. In certain sensitive individuals, exposure to shocking stimuli – pain, emotional distress, anxiety, and fear – results in activation of the vagal nerve’s action, which then causes a reduction in heart rate and blood pressure,” Dr. Sam S. Torbati, an emergency medicine specialist at Cedars-Sinai, told me for an article I later wrote about fainting.
I also could have passed out simply because I was sitting upright, which allowed the blood to flow downward. It was a warm day and I was dehydrated and exhausted – all of these may have been contributing factors.
As soon as I was lying down, with my feet up, I felt fine. By the time Dr. Black arrived in the emergency room, my primary symptom was embarrassment for causing such a to-do. I also felt guilty that he had been dragged away from his important work. He examined me and agreed that I had fainted and that nothing more serious was going on. He asked what I wanted to do.
“I really just want to go home, have something to eat, and go to bed,” I answered.
Every doctor, nurse, aide, and technician within earshot echoed this sentiment, with affirmations like: “Sound like a plan … Amen to that … Yes!”
Although I was expecting to feel back to normal within a month, that wasn’t the case. Despite physical therapy, my right foot remained mostly numb. I eventually re-learned to walk, but my foot always felt weird. It seemed to be a kind of neuropathy, similar to what some people with diabetes experience. Physical therapy didn’t help. I later learned the permanent numbness probably was caused by scar tissue on the brain’s motor nerve for my foot.
I didn’t feel comfortable driving because I couldn’t tell, without looking, if my foot was on the gas or brake pedal. So I decided to enroll in an adaptive driving program offered at Northridge Hospital in the San Fernando Valley.
I was sent information about the program and learned that on the first day I would be given a written test to evaluate my driving readiness. I’ve always been a terrible test-taker and I have the low SAT scores to prove it, so I was nervous the morning of the exam. I drank two strong cups of coffee, hoping to be extra alert. Instead, I was jumpy and ended up with a bad stomachache. It was a cool morning, and I wore a heavy sweater. But in the exam room, the heat was blasting, and I was so uncomfortable that I had trouble concentrating.
If this sounds like I am making excuses for my poor showing on the test – that’s exactly what I’m doing. The director of the program frowned as she graded my paper.
“What kind of cognitive impairment did they say you have?” she asked midway through.
“None,” I said. “My right foot is kind of numb. I can’t feel the car pedals.”
She looked me as if I were delusional. “Well,” she said. “Once they start messing with your gray matter …”
The bad news was that the test suggested I had suffered cognitive impairment. But the good news was that I was okay to drive in Los Angeles, where the bar apparently is low.
In fairness to the program director, I actually think she may have picked up on something I wasn’t aware of at the time. In the first months after surgery I would get overwhelmed by too much information hitting me all at once. Even a long phone call was disorienting. An occupational therapist I saw compared it to a computer crashing. She called it “brain overload,” an accurate description. For example, when I went into a grocery store, the music, bright lights, and people moving around were more than I could handle and triggered a kind of panic attack, a disorder I never had before the surgery. Over time, this went away, but I think the craniotomy did leave me with a bit of a processing problem. Sometimes, I’ll think one word and say something else. The other day, I was ordering jeans over the phone. When the salesperson asked what credit card I wanted to use, I said Mastercard and gave her the number. But I was holding a Visa card.
At the driving program, once I was cleared for takeoff, I scheduled classes with an instructor, a pleasant middle-aged man with nerves of steel. I nearly killed both of us multiple times, when I was trying out cars operated with hand controls. I just could not get the hang of those devices. There was one other option, which the program discouraged: driving with your left foot. In this scenario, the gas and brake pedals are flipped. Your right foot rests on a little platform and your left foot does all the work. Apparently, a lot of people get confused in stressful driving situations and hit the gas when they mean to slam on the brakes. But I didn’t appear to have that problem, maybe because I had grown dependent on my left foot, and using it to drive felt natural.
There was a company in Canoga Park that could install the adaptive equipment in my old Volvo. They’ve since left the area. My car now is an antique, but I refuse to give it up, since there’s no one nearby who can adapt a new car for me. I’m sure our neighbors hate my ancient auto, which lowers property values every time it’s parked on the street. Even with the adaptive equipment, I don’t feel all that comfortable on the road and stick to what I call “bubble driving” – the neighborhood grocery store, the local library, or my son and daughter-in-law’s nearby house. If I have an appointment “over the hill,” Stu always re-arranges his schedule to take me.
After the surgery, I went back to the UCLA neurologist for periodic checkups. At first, I had to have an MRI every three months, then every six months, then annually. Finally, I graduated to every two years. Each time, the neurologist would send me an email with the welcome results: “No evidence of tumor recurrence.”
I had all of my imaging tests done at Cedars-Sinai. I liked the technicians there, and the test could be done early Sunday morning, a nice convenience. During the procedure, I would try to think about something fun to do afterward. Top of the list: cinnamon rolls and coffee at Sweet Lady Jane, a West Hollywood bakery.
There was camaraderie among the patients in the ladies’ dressing room. After we put on our hospital gowns, we would sit in a waiting area, until it was our turn. Sometimes we talked about why we were there, but mostly it was just friendly chitchat.
One time when I was in the dressing room changing, I heard a woman in the stall next to me start sobbing. I exited my stall and listened. The crying grew louder. I wasn’t sure what to do – she hadn’t seen me and thought she was alone. Finally, when the crying grew worse, I asked if I could call someone for her. She stopped crying and, in a calm voice, said she was fine, thank you. I was seated in the waiting area when she came out of the stall. She was young and fashionable, with skinny red jeans and a cute blond bob, which, looking back, probably was a wig. If you passed her on the street, you would never know she had just been crying in an MRI dressing room.
We had been hearing good things about the local branch of the large HMO, Kaiser Permanente, and in 2014 we decided to change insurance plans. One of my first appointments was with a neurologist. My goal for the appointment was to convince him that I now could have an MRI every three years, instead of every two. I dreaded the exams. I’m not claustrophobic – which is a problem for some people having the scans – but I’m paranoid about the possible side effects of the contrast dye, so I liked the idea of spacing out the procedure as much as possible. When I first started having MRIs, there was no pre-imaging lab work. Now, you have to have a blood test to check kidney function, because researchers discovered that some patients with undetected kidney disease could have a catastrophic reaction to the contrast dye. One of my grandmothers and an aunt died of kidney disease, which makes me cautious of any potential threat to these organs. And Israeli researchers did a study that concluded the dye could be dangerous because it stays in your body for a long time or possibly, forever.
I met with a Kaiser Woodland Hills neurologist who ignored my suggestion to delay the next MRI; it had been two years since my last exam and he insisted I have one now. Grumpy, I scheduled the procedure. The day after the test, I had a meeting for a television project. Two producers were interested in developing a kids’ TV show for a boy band and I had been hired to come up with a concept.
Because the meeting was far away, Stu drove me. He dropped me off at what I thought was the entrance, but when I checked in, the guard informed me that this was not the right gate. It was a nice day and I had arrived early, so I decided to walk to the other gate.
As I made my way around a corner, I realized I had taken a wrong turn and was now lost. Just then my cell phone rang. I didn’t recognize the number but thought it must be someone calling to say the meeting was delayed.
Instead, a woman’s voice informed me that I needed to make an appointment right away at the Kaiser Sunset neurosurgery department to discuss the meningioma.
I stopped walking.
“Excuse me?”
She repeated the information. I told her I would call her back. I hung up and called my husband.
“I can’t find the entrance. And the meningioma is back.”
Stu told me not to move; he would find me. A few minutes later he appeared, and I got in the car. I wanted to call and cancel the meeting, but he convinced me to go through with it, because people were waiting. We would deal with Kaiser after the meeting.
He drove me to the correct entrance. I checked in with a guard and was directed to the meeting room. To this day, I can’t tell you who was there. Maybe there were three or four men and two women? Some of them had British accents. I still have no idea how most of these people were connected to the boy band.
I sat next to one of the producers who had hired me. There was friendly banter in the room, and we listened to the band’s new single. Then I presented the concept pitch and somehow got through it. It was an out-of-body experience. On the way out the producer I knew remarked, “You seemed really nervous.”
I considered it a victory that I hadn’t thrown up during the meeting.
Back in the car, I returned the Kaiser call and reached the nurse for the neurologist I had seen the week before. She was surprised to hear that the doctor had not informed me of the MRI results. In fact, he had left the office for the day, dumping the bad-news phone call on her. While the neurologist deserves kudos for insisting I go for the MRI, it goes without saying that he should have called me himself with the results.
The nurse apologized profusely, obviously upset with what the doctor had done. After making sure that I wasn’t driving, she pulled up the MRI scan on her computer and examined the image. She told me the tumor was really small. That made me feel better, but I still couldn’t believe this was happening again.
A few days later, Stu and I were in a waiting room for the Kaiser neurosurgery department. When we checked in, a nurse explained that a group of specialists called the Tumor Board were reviewing my case and all of my scans.
After about forty-five minutes a serious, youngish neurosurgeon met with us. He showed me the most recent Kaiser MRI scan and pointed out the tumor
“It’s roughly the size of a pea,” he said.
He explained that the doctors had gone over all of my past MRIs from Cedars-Sinai and had discovered that the tumor regrowth was actually visible on the scans taken as far back as 2009.
Wait, what? The tumor was there five years ago and no one had caught it?
The doctor showed me those prior scans where the beginnings of the new tumor could be seen. How on earth had this been missed? I was stunned.
If we had not switched insurance plans, would the tumor have continued to go undetected for years, so that eventually I would have had to have another craniotomy?
I’ll never know. What I do know is this: A hard-working radiologist at Kaiser Permanente Woodland Hills Medical Center spotted the tumor regrowth while it was pea-sized. Because he did his job so well, I could avoid having a craniotomy and instead have a one-day radiation treatment.
I met with three different Kaiser neurosurgeons who all said the same thing – the time for “watchful waiting” had passed. Left to its own devices, the meningioma was going to keep growing. So I scheduled the radiation appointment for the following week.
The treatment started early in the morning with a CT scan. Then a special plastic mask for me to wear during radiation was molded over my face. This needed several hours to set.
The radiation session wasn’t until the afternoon. Stu and I took a walk around the neighborhood, then headed back to our car to get the picnic lunch I had packed. We had heard there was a rooftop lounge area, but it turned out this was designated for employees. However, a nurse said it was fine for us to hang out there, so we ate and enjoyed the view of the Hollywood sign. After lunch, I stopped by the pharmacy to pick up the antiseizure medication I needed to take before the procedure and for a week after. I’ve never had seizures, but with most brain procedures, this medication is prescribed.
If you’re ever feeling sorry for yourself, go hang out in the waiting room of a Radiation Oncology Department.
At the Kaiser Sunset building, on Wednesday, March 12, 2014, in the early afternoon, this department was packed with patients. Most of these people had cancer. The lucky ones were like me, there for one round of stereotactic radiosurgery.
I was confused by the system, which resembled the DMV, with numbers scrolled overhead near the ceiling. I asked a teenager seated nearby how the process worked, and he explained that when it was my turn, my number would appear, and I would be called in.
He was a sweet boy, a high school senior. His world recently had imploded when he learned he had a malignant brain tumor. He showed me the outlines of the implanted shunt on the side of his head. He had difficulty talking but was still understandable. He already had been through surgery and chemotherapy; he especially hated the radiation sessions and couldn’t wait to get home and play video games. Even though he didn’t have a date, he was looking forward to the senior prom that spring. Right before his name was called, he took out his driver’s license and showed me the photo. I think he wanted me to understand how handsome and popular he used to be, before the brain tumor destroyed his life.
Anyone battling brain cancer or caring for a loved one with the disease would be justified in telling me to stop complaining about my medical journey. A malignant brain tumor, more common in men than in women, is one of the most devastating diagnoses a person can get.
As I sat in the waiting room, I realized that many of the people who were there were friends, because they had been having Wednesday afternoon appointments together for weeks or even months. As one woman came back into the waiting room after her session, she was greeted with applause and cheers at having come to the end of her radiation treatments.
When my number appeared on the scroll, one of the neurosurgeons from the Tumor Board came to get me. He asked me how I was doing. I said I was tired, either from the anti-seizure medication or because I hadn’t slept much the night before.
The doctor looked at me for a beat, clearly puzzled. “Oh … did you have butterflies?” he asked.
I like this doctor a lot. He’s a kind man and it seems he’s very good at what he does. So I’m going to blame his medical school education: Clearly, some neurosurgeons are not taught that while zapping someone’s brain is just another day at the office for them, it’s traumatic for patients.
Butterflies? More like freaking out.
I was taken to the treatment room and put on a narrow kind of gurney. The plastic mask that had been made in the morning was clamped onto my face. The doctor said the procedure would take about thirty minutes and he left the room.
What transpired was like something out of a sci-fi movie. The gurney was raised and lowered and spun around as beams crisscrossed the room. It seemed like a lot of, Lights, camera, action!, to neutralize a pea-sized tumor. While all this was going on, I did simple subtraction. It’s a little exercise I do from time to time to make sure my brain is still working. Start at 100, then subtract by 7, trying to do it quickly, all the way down to zero. Or start at 112, then subtract by 9. Not sure my father – the late Meyer Dwass, who was a brilliant math professor – would have been impressed by this, but I’m always happy when I can do it.
When the room finally stopped spinning, the mask was removed and I went to the nursing station. There, I was given a dose of steroids to reduce the possibility of brain swelling. Other than being wiped out, I didn’t feel any different. My only complaint was that my left eye seemed to have been scratched by the mask. The nurse gave me some eye drops to take home, along with a paper listing precautions and possible side effects of the procedure.
Under a heading, “Why Radiosurgery Works” was the revelation that “the mechanisms in reducing tumor size following radiosurgery is not entirely clear …”
Okay.
The goal of the treatment is not to make the tumor disappear, but to weaken its mojo “at the molecular level. While it does not remove the lesion, radiosurgery inactivates the cells so they are unable to divide.”
There is a lot that can go wrong after brain radiation. There can be swelling, requiring ongoing steroids; the beams can cause brain tissue to die (necrosis) which then must be removed surgically; the radiation can cause new tumors to grow.
A month after the treatment, I had a follow-up appointment, at which a young doctor I had never met before examined me. I told her I was feeling fine, which didn’t seem to impress her. She explained that the possible bad effects of radiosurgery still could happen – I would be vulnerable for swelling and necrosis for at least a year. And all bets were off on whether or not the radiation might one day cause other tumors to grow.
Fortunately – so far, anyway – I haven’t experienced any of those issues. After my radiation treatment, I was back to having MRIs every three months, then six months, then every year. After my last exam, I graduated to every two years. Unlike the old days when I would await word from the neurologist by email, I now have a different system in place: The morning of the exam, Stu drives me to Kaiser Sunset, about forty-five minutes away in good traffic. After the scan, the results are immediately uploaded. I then head over to meet with one of the neurosurgeons who was part of the radiation team. Over the years, he’s become one of my favorite doctors.
I appreciate that, as this doctor walks into the room, he greets me with a smile and, “Everything looks good.”
Then he goes to the computer and pulls up the scan. Together, we look at my brain.
