My skin bothers me most. From my scalp to my feet, and especially on my back and butt, I’m covered in a red, itchy rash. I have trouble sleeping, and I have to scratch, scratch, scratch. I lather soothing steroid creams all over my body, which help for a while, but soon the itching comes back, and I scratch again. The only relief I get is when I stand in the shower with lukewarm water cascading over me.
And there’s another side effect that I can’t ignore anymore.
“I really need to take care of my arm,” I say to Mirek. “Look how swollen it is. It’s very uncomfortable.”
When my left breast was removed six years ago, almost all of the lymph nodes under my left arm were taken out too. Without the nodes, lymph fluid can’t drain properly, and it builds up in the tissues in my arm, causing it to swell, a condition called lymphedema. My engorged arm has been a nagging reminder that I’m not 100 percent healthy, so over the past few years I’ve ignored it and endured the discomfort and puffiness. Now, however, immunotherapy is aggravating the lymphedema, a side effect that I knew was likely. While I see it as a fairly benign consequence of the treatment that may save my life, it really hurts. I can no longer put off getting help.
I call the reception desk in the department of physical therapy at nearby Inova Fairfax Hospital and ask for an appointment. There’s nothing open until mid-June, weeks from now. I’m surprised and dismayed by the delay and try to convince myself the time will fly by so fast I won’t notice. But my arm is really sore.
I decide to take my mind off it by making a quick trip to see my daughter and her family in New Haven. It’s been a month since we were together and I yearn to see them, to spend as much time with them as I can while I still have the time to spend. My third infusion is scheduled for May 26, a week away. I’ll be on a northbound train the very next day.
May 27 dawns hot and humid, a taste of the brutal summer that will soon stifle the mid-Atlantic. My left arm is swollen and aching, and my full-body rash is driving me crazy. But my physical discomfort is dwarfed by the joy I feel at the thought of seeing my daughter, son-in-law, and grandsons. Not for a moment do I consider canceling my trip.
At noon, Mirek drops me off at Union Station in downtown Washington, DC, and I board the Amtrak to New Haven. I clamber onto the train with my few belongings in a small suitcase and head for the quiet car, where cell phones and loud conversations are banned. I find a window seat in a row with no other passengers, nestle into the cushions, pull a book from my purse, and cherish the solitude.
The train rumbles slowly across Maryland, then New Jersey. Then, in the middle of nowhere, it grinds to a halt. Through the window I see empty fields, green and expansive pastures, and a few trees dotting the landscape. There’s no station in the vicinity, not so much as a house.
After a moment, the lights in the train and the air-conditioning system go out. All of the electricity has been shut off.
We wait in total silence, a quiet that I appreciated a short time earlier. But not anymore. This silence is irritating. It lacks purpose.
I place my bloated arm on the narrow windowsill. It’s too high and makes my arm even more uncomfortable. But the armrest doesn’t work either; it’s too low. My arm is painful, my hand swollen. I stare at its fingers and palm, so fat and tender that they look like they could burst.
Why didn’t I call the therapist sooner?
I try to focus on my book, try to be patient and relax, to no avail. My discomfort persists and the delay grows; minutes tick by and we’re still not moving. There are no announcements, and no one in the train car seems to know what’s going on. Finally, after at least half an hour, the loudspeaker crackles.
“There’s a problem on the tracks. A tree fell,” a voice announces. “We’re waiting for a maintenance crew to arrive and remove it. Then we’ll be on our way.”
More time goes by, and still nothing happens. The car is hot, and I’m thirsty. My skin feels like it’s on fire. In addition to the pulsating pain in my arm, I realize that I also have a headache—a mild but nagging throb that fills my whole skull.
Two hours pass before we begin to move. But even then, we dawdle along at a pace that seems even slower than before. It’s nearly as excruciating as if we weren’t moving at all.
I storm out of the quiet car into the vestibule and call Kasia, fuming.
“Unbelievable! This Amtrak is good for nothing!” I hiss in Polish. “How can they keep people waiting, uninformed, left to fend for themselves with no food or water? Complete lack of responsibility!”
Kasia listens patiently and tells me she can’t wait to see me. Her voice, so dear, does nothing to calm me.
It takes seven hours to get to New Haven instead of the usual five. When the train pulls into the station, I loudly share my unhappiness with everyone around. “Even five hours would be too long!” I say, daring anyone to challenge me. “The infrastructure in our country is pitiful. In Europe, this trip would take a fraction of the time.” I’m tired and hot, and this headache won’t go away.
I hail a cab at the station; in fifteen minutes, it pulls up to Kasia and Jake’s home.
When I walk in the front door, Lucian and Sebastian leap at me with such force that I almost end up on the floor. “Babcia! Babcia!” they scream in unison. “I love you, I love you so much! I missed you!” I kiss their ketchup-stained faces and hug them and don’t want to let go.
Kasia runs out of the kitchen to greet me. “Mama!” she exclaims. “I’m so happy you’re here!”
She kisses me, and I press my body against hers with all my might. I want to feel the warmth of my daughter, to let her know that I’ve missed her and am very happy to be with her. From a beautiful little girl, she’s turned into a gorgeous, mature woman, smart and exceptionally devoted to her family and her challenging work. I want to tell her, as I have so many times before, how proud I am, how pleased to see her so pretty and so accomplished.
But that’s not what I say.
“Amtrak sucks!” Those are the first words from my mouth.
She looks a little shocked.
“I can’t tell you how long that train ride was,” I say forcefully. “I will never take that train again!”
“Mum, come in and sit down. Let’s relax and—”
“It’s irresponsible to keep people on the train for so long. It was horrible.”
I see her staring at me, imploring me to let it go, but I have no intention of doing that. I’ve been wronged, and I want her sympathy. “There is no excuse,” I continue. “It’s a shame that in this rich and technologically advanced country, the trains are in such poor shape. In Europe, they run so much faster. Can you believe how long I was on the train?”
Sebastian and Lucian tug at my hand, trying to pull me into a game. But I want the boys to understand what I’ve just been through too. It was a terrible experience.
“Amtrak sucks!” I say it again. And again. Lucian and Sebastian are getting bored with my tirade, and soon they disappear into their room to continue their wild games, screaming and laughing.
“Okay, Mum, enough about the train,” Kasia breaks in. “You’re here now. What can I get you? Do you want to lie down?”
Enough? I think. I am deeply aggrieved! “The train was horrible—”
“Let’s talk about something else,” she says gently.
“Why can’t I express my opinion?” I shoot back bitterly.
Kasia tries to brush off my outburst. She tends to the boys and starts preparing our dinner. But I can’t move on. I’m irritated by Kasia. I’m irritated by the boys, by everything. Suddenly, I am so, so tired. And this headache—it’s not going away.
I stay in New Haven for two days as planned. But my time there is not nearly as restorative as it was intended to be, either for me or for my family.
I can’t stop talking about my train ride. I bring it up with Kasia and Jake—and with their friends, too, when they drop by to say hello and wish me well. They listen politely but I can see fr
om their expressions that they’re thinking, Why are you telling this story? Why is it such a big deal?
But it is a big deal. It’s a huge deal. If they can’t see that, there must be something wrong with them.
Amtrak sucks! The refrain circles around in my mind like a toy train looping a closed track. Amtrak sucks! I say it out loud, too, over and over, to anyone who will listen.
It’s not only Amtrak that is the object of my ire. I’m irritated if our lunch is even five minutes later than Kasia promised. I can’t stand how loud the boys are. I find everything my family does annoying, and I tell them so.
On the second afternoon of my visit, Sebastian comes running over, laughing loudly, and bumps into me. It pisses me off. “Be quiet!” I tell him. “Just stop it! Stop it!”
He looks like he’s about to cry. “You’re so mean!” he says.
“Oh, come on! You can’t be that sensitive! Can’t you take criticism? That’s just crazy!”
He bursts into tears and runs from the room. Kasia comes in from the kitchen.
“Really, Mom,” she says. “You are being mean. It’s not like you.”
I cannot believe what I’m hearing.
She’s siding with him? I’m mean? Is she serious?
I turn away. I don’t want to talk to any of them. I go into the guest room and close the door.
Why is Kasia arguing with me? I wonder as I lie in the darkened bedroom nursing my swollen arm. I deserve better treatment than this.
I’m not the only one who’s baffled by how this visit is going. I will learn much later that, as I’m sequestered upstairs on this late spring day, Jake and Kasia, downstairs in the kitchen, are talking about me, quietly so I can’t hear them. They’re both surprised by the way I snapped at Sebastian, to whom I’m always so loving. While I never fail to speak my mind, I’m also reflexively warm and affectionate toward my family. They now find me distant and anxious, and my obsession with the train puzzles them. They can’t figure out what’s going on.
Kasia thinks it must be the anxiety of the experimental treatment and the horror of facing my own mortality. Maybe I’m depressed, she speculates. But Jake isn’t so sure. I’ve had brushes with death before, he notes, but I was always open and vulnerable and shared with them my fears and emotions. This feels off, they agree.
It may be obvious to them that I’m acting strangely but I can’t see that my behavior is unusual. Nor can I see the confusion and suffering it is causing. Upstairs in the guest room, I’m in my own world, fixated on their poor treatment of me and the gross incompetence of the American railway system.
What’s wrong with all of them? Kasia is not being as warm as she usually is. The boys are too noisy—they’re getting spoiled. Amtrak sucks!
My headache is back. This damned heat.
Compared to the itching and other side effects of immunotherapy, the pain in my head feels like a minor inconvenience. Still, I called the nurse at Georgetown yesterday, just to be sure. But when I described it as mild and intermittent, we decided it wasn’t a big worry, although she asked me to keep an eye on it. It’s certainly not the kind of severe or sudden headache that would set off alarm bells for me, Kasia, or my doctors. I’ve soldiered through much worse, I think—and I fail to see it as a warning sign.
I don’t realize it, and no one around me does either, but deep inside my brain, a full-scale war has erupted. The tumors that were radiated are shedding dead cells and creating waste and necrotic—or dead—tissue. These old tumors are also under attack by immunotherapy, as are the three new tumors that Dr. Aizer found shortly before I was to enter the clinical trial. Mortally wounded by my modified T cells, the cancer cells from the six tumors found between January and April are like tiny dead bodies. They must be broken up into smaller particles and removed from my brain through the blood and lymphatic systems. Throughout my brain, the tissues are inflamed and swollen from the metastases and the double assault of radiation and immunotherapy. What’s more, my blood-brain barrier—which normally prevents circulating toxins and other substances from entering the brain—has become disrupted by immunotherapy and is leaking fluids through small vessels and capillaries. The fluids are pooling in my brain, irritating the brain tissue and causing it to swell, a condition called vasogenic edema.
All of this is wreaking havoc on my brain, just as my behavior is wreaking havoc on my family. Although I knew I could pay a heavy price for the chance to live, I had no idea how high the cost would be. My brain—in particular my frontal lobe, which Dr. Aizer was especially worried about because it controls higher cognitive functions—is a deadly battlefield.
And my life is in serious jeopardy. Composed of hard bones, the skull is not flexible; it can’t expand outward to release pressure in the brain. When the brain swells, there’s only one place it can go: the foramen magnum, the hole in the base of the skull through which the brain stem exits into the spinal cord. The most primitive part of the brain, the brain stem controls primal functions including respiration, heart rate, and blood pressure. If the brain stem is squeezed by swelling or is otherwise injured, a person can go into cardiopulmonary arrest—the heart and breathing stop—and die.
If I could have recognized that my frontal lobe was under attack and the effect it was having on my personality, I would perhaps have seen some parallels with the famous case of Phineas Gage, a railroad worker who suffered a horrific injury in the mid-nineteenth century. Gage’s personal tragedy marked a turning point in the study of the brain. He had been using a long iron rod to pound blasting powder into a mass of rock when the explosive suddenly went off, sending the rod shooting through his head like a javelin. It entered his left cheek and passed through the left side of his brain, obliterating much of his frontal lobe, then exited through the top of his skull and landed some eighty feet from where Gage stood. Incredibly, the twenty-five-year-old survived, living for another eleven years with a huge hole in his head—and with dramatic changes in his personality. Once a likable guy, he began to swear constantly, couldn’t follow through on basic tasks, and seemed to care about no one but himself. His behavior grew so bad that he was fired, after which he lived a peripatetic existence, ultimately perishing after a series of convulsions that may or may not have been connected to his devastating injury.
Gage’s misfortune taught us something critical about the connection between the frontal lobe and the mind—although not the lesson that was assumed at the time. Contemporary scientists theorized that the portions of Gage’s brain that were destroyed in the accident were responsible for controlling his personality, but we now know the truth is more complicated. Emotions, which form the foundations of our personalities, are not contained in a single brain region, as once believed, but rather are distributed throughout the brain in a complex network that we don’t yet fully understand.
It is clear, nevertheless, that the frontal lobe is intricately connected to the ways in which personality is expressed. People with damage to their frontal lobes—whether as a result of head trauma, like Gage; cancer, like me; or a neurodegenerative disease, as with Alzheimer’s patients—often undergo significant personality changes. In some cases, these changes are truly bizarre, combining noticeable disinhibition with little appreciation or concern about the consequences of one’s actions. More extreme examples may include loud and frequent swearing or sexually inappropriate behaviors.
Most mental conditions—from Alzheimer’s to schizophrenia, from bipolar disorder to depression—involve some sort of change to a person’s emotions and thus his or her personality. But whenever someone exhibits significant personality changes, especially over a relatively short period, it’s also possible that a frontal-lobe problem—a tumor or injury, for example—is to blame.
Like my headaches, the changes in my personality signal that something serious is going on. Squashed like Jell-O in a jar and pushed out of place from the swelling, my frontal cortex can’t perform its supervisory function of telling me to stop and think before
I jump into action. In a sense, this crucial part of my brain has reverted to an earlier state, not unlike the brain of a small child who hasn’t yet learned how to exercise self-control or navigate delicate social situations.
I have no idea any of this is happening. If I notice anything amiss, I just assume I’m stressed out—from the heat, from the exertion of the trip, from the noise and activity of life with my grandsons. All I need is to get back to my own house and my regular schedule, which is much less hectic than theirs. I long for peace and quiet. I miss Mirek, and I can’t wait to be home with him.
I leave New Haven on May 29, the day after I erupted at Sebastian. My shaken daughter and grandchildren escort me to the train station. As I kiss them goodbye, I know I will miss them, yet I’m eager to get home.
The journey back is uneventful, and Mirek meets me at Union Station. From a distance, I easily spot his car, a green Volkswagen Passat outfitted with a roof rack for our bikes.
As I step off the train, he is beaming. “I’m so happy to see you,” he says, leaning in for a kiss. “I missed you.”
I don’t kiss him back. “I’m very tired,” I snap. “I want to go home.”
He gives me a puzzled look tinged with hurt. “Did anything bad happen?” he asks. “I am sure you had a wonderful time, no?”
“Why are you asking me these questions now? I’m tired!”
He retreats into silence, but I pursue him. “You always ask me so many questions,” I hiss. “What’s wrong with you?”
His eyes are glistening. Are those tears? I don’t care.
Mirek says nothing more. We drive home in total silence.
5
Poisoned
As June arrives, I return to the routine of what’s become normal life for me: a never-ending parade of doctors and medical appointments even as I continue to work full-time. At the office, I find the minor shortcomings of my employees very irritating. But instead of letting these small things slide, as I normally would, I begin to criticize them frequently.
The Neuroscientist Who Lost Her Mind Page 8