It’s been twenty minutes since they delivered our takeout order to me, a big brown bag with a tray of creamy sushi rolls filled with eel, salmon, and whitefish decorated with avocado, wasabi, seaweed, sesame seeds, and other spices. I’m still trapped here at the counter, staring at the bill and trying to figure out the tip.
I’ve made no progress whatsoever. I see lots of numbers scrawled on a small sheet of paper but they mean nothing to me. I read the numbers but don’t understand what to do with them. I do remember that a tip should be 20 percent—that concept springs to mind—but I don’t understand the notion of percentages. I remember only a bare fact: 20 percent. Without more context, it is meaningless. What does 20 percent signify? How does one calculate it?
I scrutinize the bill. What was the cost of our sushi? I think that’s it, that number there, seventy. But if that’s how much the food cost, how much is the tip?
I turn these questions over in my mind, desperate to find an answer that doesn’t come. I change my strategy and start playing with random numbers in my head, then try them on my tongue. “Thirty dollars?” I whisper. “Or twenty dollars? No, that doesn’t sound right.”
I throw looks in the direction of the restaurant’s front door, through which Kasia disappeared nearly half an hour ago. She went to get the car, I remember, so we wouldn’t have to carry the tray too far.
Why doesn’t she come back?
I feel helpless. I open my wallet and find a ten-dollar bill.
Okay, maybe ten dollars.
I resign myself to the amount that’s available, a random bill that I place on the counter. I quickly leave so I won’t be stopped and questioned if it’s wrong. I feel like a crook.
Kasia has been sitting in the car near the entrance to the restaurant all this time.
“What happened, Mom? What were you doing in there for so long?” she asks.
I don’t know how to reply. “Oh, nothing,” I say, trying to sound nonchalant. “Do you think ten dollars is okay for the tip?”
“You left a tip on a takeout order?” She sounds surprised.
“Why not? But I had trouble calculating the right amount.”
She gives me a bewildered look. “How much was the sushi?” she asks.
I hesitate. “Seventy dollars,” I say. I feel relieved that I can recall.
“You couldn’t calculate twenty percent of seventy dollars?”
“No.” Suddenly, I feel inadequate.
As we drive home, she starts quizzing me. “What’s a hundred and twenty divided by three?”
I ponder it. “I don’t know,” I say.
“What about twelve divided by three?”
“I—I have no idea.”
“Can you add five and ten?” she tries.
“Fifteen!” I shout, overjoyed.
“Eighteen minus five?”
“I don’t know. Twelve, maybe?”
We experiment with simple arithmetic problems all the way home. We discover that I can add, as long as the numbers are simple. But any kind of subtracting, multiplying, or dividing is impossible, no matter how basic the question. These calculations are simply over my head.
Celebrating Mirek’s birthday dinner with his favorite food, sushi. I’d just discovered I couldn’t calculate the tip for the sushi or do other kinds of simple math.
When we walk into the house, Kasia and I don’t talk about it anymore, and we don’t mention it to Mirek as we celebrate his birthday with our sushi meal. Kasia doesn’t tell me until much later, but it deeply pained her to see me so deteriorated, so altered, from the strong-minded and accomplished person I used to be: her sharp-witted mother, the one who taught her math and logic as well as the importance of honesty and how to enjoy her life. She doesn’t want our roles to change. She doesn’t want to be a physician examining my symptoms and observing my strange new behaviors in an attempt to understand what’s wrong. She wants her loving, fun, competent mama. Not this confused, angry, self-absorbed impostor.
As Dr. Aizer will explain to me much later, my compromised math ability—which is called dyscalculia or acalculia—is most likely related to the lesion and inflammation in my parietal lobe, the area located just behind the frontal lobe on top of the brain. Together, the frontal and parietal lobes make up about two-thirds of our species’ highly evolved neocortex, which comprises the four lobes of the brain. Lesions or defects in the frontal and parietal lobes have been linked with dyscalculia in patients with early stages of dementia.
Scientists have been able to trace different aspects of numerical processing, such as multiplication and subtraction, to different subregions of the parietal lobe. Thus, people with lesions in a particular area of the parietal lobe may show deficits in the ability to perform one type of calculation but not others. In my case, I seem to be able to add simple numbers. But I cannot handle division, subtraction, or multiplication. It may well be that the swelling in my brain is affecting the function of specific subregions of the parietal lobe while leaving others relatively unscathed.
Lesions in my parietal lobe, which Dr. Atkins pointed out to us during our last visit, may be giving rise to other problems I’m experiencing. The parietal lobe has a role in processing topographic memory, the ability to recall the shape and structure of a previously experienced place or to hold in one’s mind the map of a place. It’s also involved in motor planning, the ability to plot and execute skilled tasks that aren’t habitual. And it’s involved in the ability to have insight into one’s illness, which I clearly lack. For me, all of these functions are now impaired.
Incredibly, though, my writing ability is not deteriorating at all; if anything, it’s getting stronger despite my short-term memory problems. Not only are my language skills still intact, they are also surprisingly robust. Perhaps fueled by the steroids, my creativity is on fire. I awaken at four or five o’clock each morning and prop myself up in bed, my laptop on my knees. My mind is swirling with ideas on how to describe what I feel. My emotions and memories are so intense, and sometimes so bizarre, that I have to turn them into words, both to unload the burden and to share these vivid recollections with others before they fade. It’s as if I’m compensating for the shortfalls of real life by transferring them onto virtual paper: a computer screen.
I write about my childhood in Poland, about my beloved grandma taking us into the primitive, remote villages of the Beskid Mountains on our summer vacations. With an overpowering delight, I retrieve long-forgotten memories of the smell of sweet hay and cow manure. I gather mushrooms in the woods, cross icy streams, and pick wild blackberries with my grandma and my little sister. These memories from more than fifty years ago are so vivid and pleasurable that I don’t want them to disappear. I type pages and pages recalling when my sister and I were little girls living in a world far away. I remember it as clearly as if it happened yesterday.
When Maria comes to visit in July, I share these memories with her. She’s amazed and delighted at the incredible details I can recall from our earliest years. But I also detect that reminiscing about our childhood makes her sad, although I don’t know why. Only later will I realize that she, like everyone in my family, is traumatized by the prospect that soon I will cease to exist, and memories of me will be all that will remain.
Throughout July, family members take turns visiting me: my sister and her husband, then Kasia, then my son and Cheyenne, then Kasia again. They keep me company, and I like it. It’s flattering that they pay so much attention to me but they’re all anxious and somber. I sense that something is horribly wrong and that’s why they’re rotating through here so often, but I can’t figure out what they’re worried about. Since I began taking high doses of steroids I don’t have headaches anymore, which is a great relief. I am upbeat, unmoved by the latest news of the multiple new metastases in my brain.
Tumors. More tumors. Oh, well. What I should make for lunch today?
I’m feeling almost happy. And I would feel even better were it not for the uneasy sens
e that my family knows something I don’t—some kind of a tragic secret that I don’t fully comprehend.
8
Chanterelles
A week after being released from Georgetown University Hospital, I return as an outpatient to undergo radiation treatment to most of the fifteen or so new tumors in my brain, including the ones that weren’t radiated before I started the clinical trial. For the time being, only the two smallest—tumors too tiny to target—will be left untreated.
This is the first time I will undergo the CyberKnife procedure. As opposed to the stereotactic radiosurgery that I received in March after neurosurgery at the Brigham, the CyberKnife Robotic Radiosurgery system is almost fully automated. Now, as I did in March, I lie strapped to a gurney with a plastic mask tightly covering my face to hold my head still, a mask that was, in both cases, custom-made for me from plastic mesh. With the CyberKnife, sophisticated software is aided by ongoing CT scanning that tracks the tumors’ positions and reacts to even the tiniest movements of my head. The CyberKnife shoots beams of high-dose radiation into the tumors from multiple directions using a high-energy x-ray machine mounted on a robotic arm. Painless and noninvasive, there’s no cutting involved despite its name. But extreme accuracy is essential so that healthy tissue is spared while the tumors are destroyed. Relying on precise calculations and a great deal of planning, any targeted radiation procedure (either CyberKnife or SRS) involves an impressive team: physicists (like my sister, Maria Czerminska, an oncology physicist in Boston), radiation oncologists (like Dr. Collins at Georgetown and Dr. Aizer at the Brigham), and dosimetrists, who calculate the doses of radiation and determine the optimal beam trajectories to minimize damage to the healthy brain tissue.
As the CyberKnife zaps my tumors, I lie as still as possible and gaze at the ceiling in the darkened room. My mind wanders into meadows and woods; I visualize a brightly shining sun and follow imaginary kites that float in a blue sky. In my head, I rhyme verses in Polish about the wounds in my brain becoming filled with green grass and blooming violets while the sadness of these many days of stress slips slowly out into the woods.
BRAIN RADIATION
U naszej mamy glowa dziurawa,
W dziurach wyrasta zielona trawa
Przez dziury smutek splywa do lasu,
Na smutki szkoda jest glowie czasu.
W zielonej trawie fiolki, dmuchawce
I porzucone stare latawce.
W dziurawej glowie figle, chichotki.
Lekka jest glowa zielonej trzpiotki.
Holes like winter potholes dot my broken head,
They quickly fill with mud and make a flower bed.
Green grass covers the holes, flowers begin to bloom,
Dandelions and violets take over the holy gloom.
Sorrow like water seeps through my ailing brain
It soothes the worried soul, eases the gnawing pain.
There is no point to worry having a grassy head.
It’s funny,
It giggles and chuckles,
It laughs and dreams,
It’s not dead.
Finally, I am sent home, tired and stiff but relieved that one more mission in my battle to live has been accomplished. For a little while, there is nothing to do but wait and hope.
I take it easy the next day. Surrounded by my husband and children—Witek and Cheyenne are here now too—I feel almost joyous, as if we are back to a normal life.
The following morning, less than two days after the CyberKnife procedure, I wake up early feeling healthy and strong and as if nothing extraordinary has happened in the previous weeks. It’s a beautiful summer day, and I propose we go for a morning of light exercise in the woods of our favorite training ground, Prince William Forest Park. A gorgeous expanse with miles of hiking and running trails, the park was developed by the Works Progress Administration during the Great Depression.
This month, Witek, Cheyenne, and Kasia are preparing for triathlons. I was forced to put aside my own triathlon training after getting sick in January, although throughout this whole ordeal, I’ve never stopped working out—almost every day, no matter how I felt, I ran, walked, swam, or cycled. Today, as always, I’m eager for some physical activity. Even at the not-so-fast pace I now take, walking in the woods relaxes me. With my loved ones around me, it will be a great escape from the doctors and hospital rooms. I crave this trip. I need to feel as normal as possible.
The asphalt road through Prince William Forest Park is a loop of about seven and a half miles of hilly terrain. Whenever I’m training for a triathlon, I cycle it four or five times and then run it once. Since I have just been released from the hospital after being treated for profound brain swelling and since I’m two days post-radiation, I decide to take it easy; I will walk just one seven-plus-mile loop.
“Are you sure?” Mirek asks, concerned.
For our entire marriage, we’ve always checked on each other, but since I’ve gotten sick, Mirek has been obsessed with my safety.
“I’m fine, absolutely fine,” I assure him.
Mirek loads his bike and Kasia’s into our Toyota RAV4, and we head out, Witek and Cheyenne following in their car. It is already hot when we pull into the small parking lot we always use. We agree to meet back at the car when our workouts are finished and reward ourselves with a picnic lunch in the park. They all volunteer to check on me as we pass one another along the road.
Witek, Cheyenne, and Kasia take off on their bikes. Mirek kisses me on the cheek, hugs me, and pedals off on his own.
I hit the asphalt road and begin to walk, my arms swinging purposefully, my stride long and determined. The smell of the woods, the chirping birds, the waving branches of the tall trees make me feel free and happy. I breathe in deeply, and my lungs fill with fragrant air.
After about an hour, I pass a wide field that is yellow with chanterelle mushrooms. Chanterelles—meaty golden mushrooms with exotic ribbed underbellies and a strong peppery smell and taste—are a family favorite. They evoke memories of Poland, where they were abundant and we picked them in the woods around our summer home or on the outskirts of Warsaw. We love to cook them in various sauces or sauté them in olive oil and serve with scrambled eggs.
I’m delighted to see so many chanterelles and eager to gather as many as I can. But I have no bag to put them in so I keep power-walking. Luckily, Mirek soon rides up on his bike.
“There’s a field full of chanterelles just a little ways back,” I tell him. “Can you go to the car and get a bag and pick some? We’ll have them for breakfast tomorrow with scrambled eggs.”
Mirek takes off and I continue on my walk. After another ninety minutes of vigorous walking, I finish the seven and a half miles and reach the parking lot.
Although I was filled with energy when I began, two and a half hours ago, I’m now completely exhausted, so physically and emotionally spent that I feel like I’ve run a marathon. With an almost primal urgency, I feel a desperate need to rest and eat immediately.
But to my surprise, Mirek isn’t back yet.
I will call him.
But—I can’t remember his number. And for some weird reason, I can’t recall how to find his number on my cell. I fumble with the phone. And then I forget what I’m doing.
What’s this about? Oh, yes, I’m trying to call Mirek. But where’s his number? How do I call him?
I fiddle with the phone, trying to figure it out. And over and over, I have to keep reminding myself what I’m trying to accomplish. Finally, I locate his number in my contacts list and call him.
“There are so many chanterelles!” he says excitedly. “I’ve collected a huge bagful.”
“We need to eat lunch right now,” I say angrily.
“Great!” he says. “I’ll be waiting here for you.”
“No, no! You come here!”
“I can’t bring them on the bike, they’ll get squashed,” he answers. “I’ll wait for you on the side of the road.”
Only after we han
g up do I realize I have absolutely no idea how to find him.
I know this park like my own backyard. I’ve cycled and run and walked it scores of times over the years. Just an hour or so earlier, I’d told Mirek where to find the chanterelles. But now my mind is frozen. I can’t picture his location at all. Driving the car to him seems like an insurmountable challenge, a feat completely beyond my ability.
I stand with cell phone in hand, fuming. How the hell am I going to find him?
I decide to call him back. But once again, I can’t figure out how to find his number.
I can’t seem to think straight. How do I call him? I concentrate very hard and try again. And again. After enormous effort I find his number, but by now I’m very frustrated and growing angrier.
“Come here now, Mirek!” I snap. “I don’t know where you are!”
“Just drive down the road,” he responds. “You can’t miss me.”
“Which way?” I plead.
“It’s a one-way road, darling,” he says.
That confuses me even more. What does one-way mean? It makes no sense. Even though I’d driven on this road dozens and dozens of times, getting to Mirek seems like a highly complex puzzle that I cannot solve.
“I don’t know where you are!” I repeat, my voice rising.
“It’s a loop. Just drive down the road,” he says, and he hangs up.
I stay in place, seething. I look for his number to call him back; it takes even longer to find it this time.
“Where are you?” I ask, on the verge of crying.
“I told you!” he says. “Just get in the car and pick me up.”
The Neuroscientist Who Lost Her Mind Page 13