It’s becoming more and more difficult for my brain to function normally. Increasingly, I find it a struggle to carry out ordered, sequential movements. I can no longer execute simple tasks that I’ve done many times before or organize them in my mind in a methodical fashion. By itself, each step is very familiar, but combined together, they are as challenging as the complex experiments I used to carry out in my labs. I know that I can’t drive without wearing a seat belt, and I vaguely know where the seat belt is supposed to be. But I can’t perform the basic steps to buckle it—steps that were automatic for me only days ago.
What part of my brain isn’t working? It’s likely that communication between my prefrontal cortex and my hippocampus is failing, which is unpleasantly reminiscent of the prefrontal cortical connections I disrupted in rats to study schizophrenia. Perhaps the areas that aren’t functioning normally could be determined if I were to undergo a battery of neuropsychological tests as my problems intensify. But no one is testing me like I tested my rats, in controlled experiments carefully designed to examine particular elements of the behavioral impairments. Still, I share some similarities to my brain-damaged rodents: I can’t find my way in the maze of streets in my cozy neighborhood, and I cannot locate the sweet rewards of food and safety that are waiting for me at my destination.
In some ways, my struggles are similar to those of people who have a condition called dyspraxia, the loss of motor skills, motor memory, and the ability to perform coordinated movements. Dyspraxia can be due to a developmental disorder; the actor Daniel Radcliffe has been open about his struggles with it. Dyspraxia is also quite common among people with Alzheimer’s disease, and the symptoms can be progressive: First, patients have trouble with sophisticated motor skills, and later, they are unable to do simple things such as brush their teeth. Eventually, some can’t even swallow.
These kinds of difficulties are also common in people with damage to the parietal cortex. The parietal lobe is also related to the ability to read and do math; dyspraxia often coexists with dyslexia and with dyscalculia (difficulty doing arithmetic, something I will soon begin to experience as well). This could have suggested, if we’d thought about it at the time, that my brain problems were more widespread than any of us imagined.
In addition to dyspraxia, I’m also suffering from loss of visuospatial memory, which makes it hard for me to remember my location and navigate my way through space. These problems are similar to those described in people with a condition called developmental topographical disorientation (DTD). From very early on in their lives, perhaps from birth, people with DTD don’t recognize very familiar environments. Just as I could not find my way home in a place where I’ve lived for almost thirty years, people with DTD have no recognition of their surroundings no matter how many times they follow the same route. For me, this was short and transient; for them, it is permanent.
Spatial orientation involves multiple regions of the brain and a network of connections among neurons in different areas. Two regions, however, stand out as crucial for spatial memory: the prefrontal cortex and the hippocampus. In the case of DTD, it may be the connectivity between these two regions that has gone awry, as MRI scans have demonstrated to neuroscientists who study this rare neurological disorder.
Is this what is happening with me? It’s possible. My prefrontal cortex appears to be dysfunctional and perhaps can’t connect efficiently with other brain regions, including the hippocampus, one of its main, albeit indirect, targets. It’s possible that the lack of communication between these two regions in my brain is the reason why I cannot figure out where I am, even when driving through a neighborhood where I’ve lived for decades.
My changed behaviors do not raise enough red flags for my family and colleagues to wonder whether my brain may be seriously malfunctioning. For one thing, I’m not telling my family the whole truth about every single problem I encounter. I don’t even tell them about how I smashed the car. The lapses in how I usually act can be, and are, easily discounted and explained by the stresses of my grim diagnosis, challenging treatment, responsibilities of family and career.
And, regardless, I’m still functioning at a very high level—which is remarkable, given what my family, my doctors, and I are about to learn about the shocking reality of what’s happening in my brain.
7
Inferno
This headache is killing me.
Dull and throbbing like distant thunder, it overwhelms me, taking over not only my head but my entire being. The clock in my bedroom shows that it’s the middle of the night. I lie in bed wide awake.
Somewhere deep inside my body I feel an approaching storm. All of a sudden, lightning strikes. My stomach turns upside down, nausea overcomes me, and I leap from bed, rush to the bathroom, lower my head over the toilet bowl, and vomit violently. My skull seems to split in half as the headache explodes, then slowly recedes. I feel better but so weak I can’t stand up. Kneeling before the toilet, I stare down at strange pieces of plastic swirling in the water.
I am terrified. It’s surreal, the sight of all this plastic I’ve vomited up.
Why would they have made a pizza filled with plastic? Poison. They are poisoning us!
Last night, June 16, we celebrated my final infusion, a finish line I’d sworn I would cross. I was elated but very tired. I felt as if I’d just graduated from college with the highest grades in my class or crossed the finish line of a marathon. Done with immunotherapy! After twelve weeks of hoping that I could withstand the hardships of this treatment—itchy rashes covering my body, gastrointestinal problems, the loss of thyroid function—it was over. That final hospital visit was the longest ever—over six hours waiting for blood tests, waiting for the doctor, and waiting for the drugs to be delivered from the pharmacy in their transparent plastic bags and then released very slowly, drip by drip, into my veins. Afterward, Mirek and I were both so tired that I couldn’t even consider making dinner. On the way home from the hospital, we did something we rarely do: we stopped for takeout pizza at a local restaurant.
We don’t go to restaurants or get takeout very often. We both prefer my cooking, one of my great pleasures. In America, I’ve taken advantage of the freedom of a previously unimaginable selection of foods by cooking as often as I can. I’ve prepared our meals for years, no matter what my day was like, no matter if I was going through chemo for breast cancer or recovering from a mastectomy or brain surgery. After every marathon and triathlon that I’ve raced, I’ve returned home tired but beaming with happiness and prepared our dinner. Usually it’s something simple and healthy: pasta with stir-fried vegetables and grated Parmesan; baked fish, roasted potatoes, and arugula salad; chicken stir-fried with sweet peas, tomatoes, and onions, and spiced with lots of hot red pepper. Mirek and I love to sit in our spacious dining room overlooking the woods enjoying glasses of wine—or, more often, a bottle. We share the events of our day, relive a road race, discuss what I talked about with Kasia or Witek or Maria in our daily conversations. This is our sacred time for relaxing and catching up with each other. Our dinners last at least two hours. To mark the end of the meal, we drink strong, hot tea.
Now, as I stare at the bits of plastic in the toilet, I regret the decision to break from our ritual.
The restaurant filled the pizza with plastic! Pieces of plastic bags! To make the pizza look bigger so they could charge more money! I should have known! The cheese was so white, weirdly white, with a crumpled texture too strange to be real food. It didn’t taste like real, crunchy pizza. The bottom was soaked in some kind of odd liquid. And the top! Covered with chewy, inedible plastic!
I am seething. We’ve been poisoned!
“Mirek! Wake up!” I rush into the bedroom. “The pizza! It’s poison! It was made of plastic!”
He sits up in bed and tries to calm me.
“It isn’t poison,” he says gently. “The pizza wasn’t that good, but there was no plastic or anything like that in it.”
“No, li
sten to me,” I say. “I just threw it all up. The pizza was made of plastic! I saw it floating in the toilet. The cheese was plastic, the crust was plastic.”
“But I didn’t get sick,” he says soothingly. “Don’t you think your vomiting was a reaction to yesterday’s infusion?”
“Don’t you believe me?” I grow more agitated. “I saw it. I saw the plastic. They are poisoning us!”
He gently pats my back, asks if he can get me some water. “Come lie down, try to sleep,” he urges. “You’ll feel better.”
I announce we will never eat there again. Mirek agrees. But as he falls back asleep, I lie beside him, angry and suspicious.
Why won’t Mirek see what’s going on? Why is he defending the pizza place?
In the morning, I call Kasia and tell her that the pizza place down the street tried to poison us with plastic.
“Mom,” she says carefully, “I think you should call Dr. Atkins or his nurses.” I can hear the concern in her voice. “Please call them.”
“It’s not me! It’s the pizza place!” Why won’t Kasia believe me?
“Mom? Will you please call them?” she presses.
“No, no, I’m fine,” I say. “It was only that awful pizza. Never mind. It’s already passed.”
On Wednesday and Thursday, I drive myself to the office in the morning and spend uneventful days at the brain bank. Thursday after work, I go swimming at the local pool, then go food shopping. When I get home with the groceries, I tell Mirek that I’m feeling very well. But after dinner, when I sit at the computer to continue writing my life stories, Mirek notices that I’m having trouble typing. He also sees that I have no idea how much I’m struggling; I don’t notice that some of my words are mangled. Mirek says nothing to me but heads upstairs to telephone Kasia. They talk about the incident with the pizza and the splitting headache I had that night. They’re very concerned about my behavior.
Early the next morning, Friday, Kasia calls me.
“I really think you should contact Dr. Atkins,” Kasia says. “I’ll draft an e-mail to him and send it to you. You can forward it to his nurses.”
A few minutes later I receive the note that Kasia wants me to send:
My daughter wanted to bring this up, though I feel fine. She is worried that there may be subtle changes in my driving and perhaps in thinking (mild forgetfulness, forgetting to turn at the right intersection). This could be from stress, feeling down, or something else. Given the ongoing headaches and especially the severe headache I had the other day she is concerned about swelling or inflammation around the brain lesions. Can you bring this up with Dr. A. and see what he thinks. Many thanks.
I am furious. My own daughter is betraying me.
Kasia is a very smart physician, and I know that she’s upset and worried about me. But she is being hysterical and irrational. And she’s really overstepping her bounds! As if there’s something wrong with me!
I have my own very good mind, and I have much more life experience than she does. Everyone in the family respects my intuition and judgment, not only about my own well-being but about the health of all of us. Kasia may be an experienced doctor, but she calls me when she doesn’t feel well. She calls me when her kids are sick, and not just to share her worries and seek comfort. She always wants my advice. Mom, do you think it’s serious? Should I call the pediatrician? What if the fever gets worse? What if . . . I always tell her what I would do, and more often than not, she follows my advice. I am still her wise, trusted mother, after all. So why is she treating me like this?
I e-mail Kasia back:
I will not write it, maybe I will call the doctor, but please do not tell me what to do. Mama is in charge of her own fate and will do what she thinks is appropriate. I know you are worried, it is moving, but please, leave my decisions to myself. I am fine!!!
Moments later, Kasia responds with an e-mail:
Mama!!!!! Ok!!!! I respect your decisions and will do as you wish.
I don’t call the doctor. A little while later, Kasia calls me and offers again to contact them herself. For whatever reason, I don’t object anymore. An hour later I get a phone call from Dr. Atkins’s nurse, who says she received Kasia’s e-mail and wants me to come immediately to the hospital. She’s scheduled an emergency MRI for an hour from now.
“Let’s go and get the MRI,” Mirek says. Even though he isn’t pushing me, something about the way he speaks makes me suspicious.
Why is Kasia plotting against me? Mirek is on her side too! They’re all against me!
I’m still annoyed but I agree to go. I pick up my car keys and head outside.
“But you’ve been having some trouble with directions. Why don’t you just relax and let me drive?” Mirek suggests.
“I always drive!” I retort, and I climb into the driver’s seat. He reluctantly gives in.
No sooner do we get onto the highway, however, when he starts shouting: “Watch out! Look out!”
What is he going on about?
“You’re not inside the lane!” he cries. “Stay in the center! No, no, you’re crossing over the line again! Pull back, pull back!”
“I’m fine!” I insist. “It just looks different from where you’re sitting. Why are you so critical of me all the time? Can’t you just be quiet?”
But cars behind us start honking, and I realize I’m about to hit the truck to my left. I swerve sharply at the last minute. Mirek has his head in his hands.
“Oh, stop it,” I say. “Nothing happened. It’s not a big deal. Get over it.”
With no further drama, we check in at the Georgetown MRI center. A nurse inserts the needle into a vein in my arm so that contrast liquid can be injected. I lie on a narrow table, and a technician slides me into a powerful magnet that looks like a tight tube. With my head secured in a plastic crate and my body wrapped in white blankets, I look like a mummy.
I remain motionless while the magnetic field is switched on and off to the accompaniment of loud tapping noises from vibrating coils that are invisible to me. Unable to see anything in this tunnel, I am alone with the mangled thoughts in my confused brain. The knock-knock-knock, knock-knock sound of the MRI machine, repeated over and over in varying rhythms and pitches, is strangely relaxing. I like the solitude. I feel cozy and safe, happily cocooned in this tight space. It shields me from the nonstop stimuli of the outside world.
After an hour, the MRI wraps up. I dress and find Mirek waiting in the hallway.
“Done,” I say. “Let’s go home.”
Before we reach the parking garage, Mirek’s cell phone rings.
“What? Why?” he says. “Oh, okay, we’ll be there right away.”
He turns to me and says, “We have to go immediately to the emergency room.”
“Why? What’s happening?”
“The nurse said your brain is very swollen,” Mirek says.
As we walk over, I realize my headache has returned, insistent and intense.
In the ER, they take me quickly to a back room and check my blood pressure. It is very high. They lead me to a cubicle, where I lie down in bed behind a curtain amid the awful noises of trauma and emergency. People outside my cubicle run and shout and cry and scream. Here I am again, just five months after they discovered the bleeding tumor in my brain.
But I’m not worried in the least. In fact, I don’t fully understand why we’re here. Mirek’s eyes are sad, his face troubled, but I can’t fathom why he’s upset. I try to cheer him up, try to joke. But his expression doesn’t change. He just holds my hand and looks at me.
After a while, my oncologist Dr. Atkins enters my cubicle with two of his nurses. They look at me with such sorrow that I think some kind of a mistake has been made. They can’t be worrying about me—why should they?
“The MRI shows new tumors in your brain,” Dr. Atkins says. “The immunotherapy didn’t work. I’m really sorry.”
I look from face to face. Mirek is somber. Dr. Atkins seems deeply disappointed, as if h
e’s failed me.
My poor doctor. He doesn’t understand—I’m fine!
“There’s also swelling and serious inflammation of brain tissue,” Dr. Atkins continues. “I’m prescribing high doses of steroids right away to reduce the swelling, and I’m admitting you to the hospital.”
Oh, Dr. Atkins—I feel so sorry for him. Let me reassure him.
“No, no, please, wait,” I say. “I don’t want steroids. From what I’ve read, steroids will reduce my immune response and interfere with my treatment. And I know the immunotherapy worked. I know it. I’m sorry about this inflammation in my brain but you know it can happen. There are often setbacks with immunotherapy before there’s improvement. Don’t worry, please. I will be fine.”
I look at Dr. Atkins, then at Mirek, whose eyes are filled with tears. The two nurses also look as if they are about to cry.
All of this fuss for no reason! Let me explain to them what’s happening—maybe that will calm them down.
“Tumors often get larger at first when this treatment begins,” I say. “I remember that, I swear I do, from several scientific publications I read just weeks ago. The tumors you see on the MRI may look larger than they really are because my T cells are fighting the melanoma cells and killing them. What you’re seeing is evidence of this dramatic war in my brain. We have to give my body time to clean up this ugly battlefield. We just have to wait. Trust me.”
But Dr. Atkins shakes his head. They all look through me, past me, their eyes glistening, their faces solemn. They talk among themselves, not really listening to me. They lean over my bed, examine my face, and worry.
I feel so sorry for them. I wish they could understand that I’m right.
Mirek tells me Kasia is on her way from New Haven, and she arrives a few hours later, joining us in the hospital room to which I’ve been moved. I am stunned to see her. “Kasia, oh, baby, you shouldn’t have done this! I’m really okay,” I assure her. She begins to cry. She has canceled her Italian vacation with Jake and the boys—something they’d planned for a year—to rush here. I’m happy she’s with us but flabbergasted at her decision and her outpouring of emotion.
The Neuroscientist Who Lost Her Mind Page 11