The Neuroscientist Who Lost Her Mind

by Barbara K. Lipska

  In the morning, Mirek and my children return, and our waiting resumes. It’s Saturday, and the hospital is overcrowded. No doctors stop in to see me. Nothing is happening. By noon, we’ve made our decision—we are leaving here and going to the Brigham in Boston tomorrow. But it isn’t as easy as we thought. The attending physician refuses to approve it, and the nurse tells us that insurance will not pay for the ER visit if I check out against medical advice.

  “I’m afraid to leave without their approval,” I tell Kasia. “What if the tumor bleeds even more? And this hospital visit will cost us tons of money if insurance doesn’t pay!”

  But Kasia is checking on her iPhone for the patient’s bill of rights and the insurance rules, which contradict the nurse. “It’s not true,” Kasia says. “We are leaving, Mom.”

  We head north to Boston early the next day, Sunday, January 25. Before we leave, my friend Jania, a hairdresser, comes to my home to cut my hair. I called her at dawn and told her my news, and she rushed over, arriving in her pajamas at 7:00 a.m. I ask her to give me a crewcut in case they open my skull.

  “It will be easier for the wound to heal,” I explain.

  Mirek and I pack our Toyota RAV4 with our trainers and road bikes so we can use them as stationary bikes in my sister’s basement. We agree that no matter what happens, our athletic training can’t stop. I also take my skis. Just in case.

  Mirek, Kasia, and I hit the wintry roads, snow falling lightly, as Witek and Cheyenne follow in their car. We pass a nearby construction site, where a Giant supermarket is being built. I have been so excited in recent months that we will finally have a decent grocery store in the neighborhood and we’ll no longer have to drive for miles in traffic just to do our shopping.

  Will I live to see it open? I wonder.

  I feel the urge to talk, to plan the future for my family. I’m sure I’m going to die—not right away, but soon, maybe in a few days or weeks. I have, of course, researched my condition on the Internet. The prognosis for metastatic melanoma in the brain is terrible, especially if you are over sixty and you have three or more tumors. I have three tumors, and I’m sixty-three years old. Four to seven months of life is all I’ve got left. I will be dead as early as May, as late as August. I won’t make it to sixty-four.

  As I sit next to Mirek, who is driving, I can’t stop thinking about my family’s future. I need to write my will and create a trust for my assets to make things easier for them. I want my belongings to be fairly divided with no arguments, no lawyers, no complications.

  “Mirek will have to sell the house,” I say to Kasia, who is sitting in the back seat. “He needs to move closer to you kids or my sister.”

  “Stop, Mom,” Kasia says. “Let’s talk about something nice. We’ll go cross-country skiing. You’ll like it.” I stop speaking about my plans because I see my grim preparation is hurting them. But I continue silently.

  Mirek cannot stay alone. How difficult would it be for him in our house, with everything the same but without me there anymore? How would I feel if he were gone? How lonely to come back to a darkened house—my clothes still there, my earrings, my life as I had left it. But no me.

  I feel so sorry for him that my eyes well up with tears. I’m afraid they will see me crying. I have to shake it off and stop thinking such thoughts. But Kasia knows. “Mom, it’ll be all right,” she says tenderly. “Mirek will be fine. We’ll all be fine. Don’t worry.” But of course I worry. I worry for them, and for myself.

  We all stop for the night at Kasia and Jake’s house in New Haven. Our grandsons, Lucian and Sebastian, greet Mirek and me with shrieks of joy. They don’t fully understand what’s happening but they know that Babcia (Polish for “grandmother”) is sick and everyone is worried.

  This house is freighted with meaning and memories. When Mirek, Kasia, Witek, and I first moved to America in 1989, we lived in a rental apartment in a subdivision of townhouses in Alexandria, Virginia, among a sea of immigrants from around the world. We were delighted by the size of our apartment. With bedrooms for each child, it was the largest place we’d ever lived and seemed like a mansion. We owned no furniture, so a work colleague loaned me a queen-size air mattress that Mirek and I shared, and the children slept on large pieces of foam we bought at a garage sale for a dollar each. At a church sale, we paid thirty-five dollars for a chrome-plated table and beaten-up chairs with plastic yellow cushions that felt luxurious after weeks of sitting on the floor and using a cardboard box for our table.

  It was Kasia who first mentioned that the only kids who got off the school bus at the housing complex were recent immigrants. Other kids—she meant richer kids—lived in single-family homes in nice neighborhoods. We researched what it took to buy a house and found that a mortgage would cost about the same as our rent. And the money would go into our own property! It was a revelation. The concept of owning a house was thrilling and totally foreign. We began looking for something that we could afford, and in the real estate section of the Washington Post, we found a house in Annandale, Virginia, in a neighborhood very close to the one we were in, with large Colonial single-family houses and meticulously kept yards. The property we bought stood out as long neglected, with spots of bare earth and huge tree roots cutting through the front yard, and the house needed a lot of work. But it backed onto woods and a stream. Most important, it was our land, all the way to the center of the earth. We loved the sense of freedom and independence that it offered. It told us that we had made it in America.

  Both Kasia and Witek now have beautiful three-story homes of their own. Witek and Cheyenne live in a bohemian district of Pittsburgh, and Kasia and Jake’s home is a sky-blue Victorian on a quiet street a mile from the Yale campus. Every time we visit them, the sight of all they have accomplished makes my heart swell with pride and love, as do Kasia and Jake’s adorable children, my grandsons, Lucian and Sebastian.

  Everything about these boys makes me deliriously happy. The smell of their hair and skin is intoxicating, overpowering. I love their smiling faces, their funny, uneven, oversize teeth, their messed-up, sweaty hair, the energy bubbling in their little bodies. There’s nothing I love more than visiting them and playing their games with them, reading to them, walking them to school. I try to cherish every moment of their childhoods—a time in their lives that will, of course, pass too quickly.

  Where does it come from, this overpowering love of a grandmother for her grandchildren? Forty years ago, when Kasia was born, my mother-in-law laughed and wept and doted on her first grandchild, clapping with joy and excitement at every minute change of expression on the baby’s face, every movement of her tiny hands or feet. I was embarrassed for her. Then Kasia’s son Sebastian was born, in 2006, and I quite similarly became a doting grandma. When Lucian was born three years later, it happened again; I felt the extraordinary emotions triggered by becoming a grandmother. Just as my own babcia adored me and showered me with unconditional love, I discovered that a grandma’s love is boundless, stupefying, sentimental, and capable of turning one’s brain into schmaltzy mush. It’s also superbly gratifying and blissful. And I have never felt more desperate for these two small, precious boys than I do now.

  We all take Sebastian and Lucian to school the next morning, a Monday. It hits me that I may never see them again, and a wave of maddening sorrow rises inside my chest, floods my body, and chokes my throat. I kiss their heads, smell their hair, hug their thin, little bodies, and leave.

  Mirek, Kasia, Cheyenne, Witek, and I continue north, leaving Jake behind to care for the boys. He will join us later. It’s snowing again as we pass through the stark, binary landscape: white roads, white fields sliced with black rivers, black tree trunks with branches like pencil strokes on white paper. A frozen world.

  I feel I am frozen too, as fragile as a thin sheet of ice. A tap in the wrong spot and I could shatter.

  We arrive in Boston before noon. Maria has already arranged for appointments today with various doctors at the Brigham and Wo
men’s Hospital and the affiliated Dana-Farber Cancer Institute. My melanoma oncologist, Dr. Stephen Hodi, is at Dana-Farber, while Dr. Ayal A. Aizer, a warm, caring, and meticulous radiation oncologist, and Dr. Ian Dunn, a neurosurgeon, are on staff at the Brigham. They will all work together on my case.

  There are six of us at each appointment—Kasia, Witek, Cheyenne, Mirek, Maria, and I—as well as the doctor and a nurse and sometimes a resident or an assistant too. Sometimes the doctor has to ask which of us is the patient, which amuses us. We crowd the rooms, my tall and handsome family—my sister and I are the smallest—and at each visit, the staff has to add chairs.

  Each doctor does the same simple test of my vision: he raises the index and middle fingers of one hand in a V shape and moves the V up, down, left, and right, in each of four visual quadrants, asking whether I can see it. When the V is moved into my lower-right quadrant, it’s invisible to me.

  I immediately have another MRI as well as a CT/positron emission tomography (PET) scan, which will reveal the location of any fast-dividing cancer cells. We spend a long time with Dr. Aizer, who explains why surgery on the bleeding tumor should be done first, followed by radiation of the area and of the two other tumors. He takes care to describe everything clearly and spends hours discussing the scans. My oncologist Dr. Hodi, a world-famous expert in cutting-edge treatments for melanoma, says surgery and radiation must be done before he steps in with other therapies. His explanations are convincing, and we all agree with his proposed treatment plan.

  As we wait to meet the neurosurgeon, Kasia looks at my records and exclaims, “Oh my gosh! Your surgeon is Ian Dunn, my friend from medical school.”

  “Is he any good?” I ask.

  “Fantastic!” she assures me. “Very studious.”

  My family crowds into the small office, and Kasia is sitting with me on the examining table when Dr. Dunn arrives with his assistant. He and Kasia chat and laugh. “What a coincidence!” he says.

  Dr. Dunn pulls up the scans on his computer and points to the frightening shapes on them. I glance at them quickly, then look away; as much as I have studied brains, I don’t like peering into my own when it is damaged like this. I don’t like to see scary black spots where healthy gray tissue should be.

  Just as my ophthalmologist and I suspected, the tumor causing my symptoms is in the primary visual cortex, in the occipital lobe at the back of my head, which is why it’s affecting my vision. The size of a large raisin, it’s nestled down in the sulcus, the narrow valley between two gyri, like a little black sheep hidden in a crevice between two hills. Although it’s bleeding, it’s not in the worst place, I tell myself. If it were in my spinal cord, I might be paralyzed. If it were in my brain stem, which controls basic life functions like breathing, then surgery might be too dangerous and out of the question. I’m fortunate that it grew in a place that didn’t threaten my life but let itself be known. Had the tumor developed without noticeable symptoms—if my hand hadn’t disappeared and freaked me out—it might have thrived for quite a while before any of us noticed anything wrong. I’m sure I would have died. There’s a lot of luck in this unlucky situation. This nasty little raisin is saving my life. For now.

  Dr. Dunn explains that he will stop the bleeding and remove the tumor. A lab will examine it to determine whether it is, in fact, melanoma, and if so, what kind.

  “Am I going to go blind?” I ask. Surgery always involves serious risks, including, in my case, damage to the occipital lobe, which could result in the loss of vision.

  “Probably not, although theoretically, it’s possible,” he says. “And if you don’t, you may still have vision problems. It’s also possible that you won’t wake up after surgery. That’s unlikely, but I must inform you of all the risks.”

  His young male nurse, energetic and cheerful, presents a consent form listing all the terrifying things that could go wrong. I sign it and we leave.

  The surgery is planned for the next day, Tuesday, January 27. But a huge snowstorm is on its way. It will come to be known as the Blizzard of 2015, a nor’easter that will dump tons of snow in the northeastern part of the United States and Canada. As we drive to my sister’s house in the Boston suburbs, snow is already falling. The narrow, winding roads are slippery and soon become shrouded in white. The Toyota skids often as we hold our breath.

  We end up waiting two more days for my surgery as the blizzard covers the world around us. The snow piles up to the windows of my sister’s house. After the storm, it’s beautiful outside, quiet and calm. I walk with Kasia and Witek in the woods, and the snow reaches up to our thighs. It is light, fluffy. I lie down on my back and make snow angels. We are laughing. It is so good to be alive.

  Since the surgery is delayed, I spend my time enjoying my family, and I completely block out any thoughts about the tumors. Although I’m an expert in the brain, I’m repelled by what’s going on inside my own. When I held that first brain in my palms at the brain bank, I could admire it with detached interest—because it wasn’t mine. Now, while I want to participate in my treatment by selecting a highly skilled team of doctors, I don’t want to look at my MRIs or think about what’s happening in my skull. My own brain presents a mortal danger to me.

  It is Thursday before the roads are clear enough for us to make it back into Boston.

  The traffic is heavy that morning, and it takes forever to get to the hospital. The streets are clogged with cars moving very slowly in deep snow, and there’s more snow in the forecast. Finally, we arrive. My whole family is with me, including Jake, who’s joined us after leaving the boys with his mother in New Haven.

  In the late morning, we enter a large area with semiprivate cubicles furnished with couches and comfortable armchairs; these provide families some privacy as they wait for their loved ones to come out of surgery. My family has brought all kinds of things to entertain themselves with: books, games, computers. They were told the wait could be long—the blizzard may have contributed to the delay—and two or three hours pass before I’m even taken back to the pre-op area. But we are all in good moods, joking and chattering as if we are at a party, abuzz with nervous energy.

  When they call for me, I head into pre-op with Mirek and my sister. There, I’m examined by the nurse, meet the anesthesiologist, and visit again with my surgeon Dr. Dunn. Far from being scared, I feel immense relief that the surgery is finally happening, that I soon will be under anesthesia and won’t know or remember anything.

  A nurse administers a strong sedative as I sit in the pre-op room and soon I begin to float away. I embrace the darkening of my mind, unaware that this brush with oblivion is only the beginning of my long and dangerous journey.

  3

  Into My Brain

  As soon as I am unconscious, Dr. Dunn drills into the back of my skull to reach the bleeding tumor in the occipital lobe. He finds the nasty raisin relatively easily; it’s growing between the folds of my primary visual cortex.

  With the help of his surgical team, Dr. Dunn scoops out the tumor and suctions out the blood. He replaces the portion of my skull that he removed to gain access to my brain, seals the bone with titanium screws, and stitches me up. To keep the sutures intact, he folds the skin of my scalp and rolls it along the five-inch incision so that it looks like a fat earthworm glued to the back of my head. Later it will flatten out into a neat scar.

  A few hours later, I open my eyes.

  The first thing I notice: I can see! I’m not blind! I can see everywhere, in all my visual fields—left, right, up, and down. I gaze around the hospital room testing my eyesight, raising my fingers in a V shape and moving them into each of the four visual quadrants like my doctors did before the surgery. No problems; none! I can see the V no matter where I place it! No vanishing hand, no blocked fields, nothing abnormal. The tumor and bleeding haven’t caused permanent damage to my occipital cortex.

  I’m so relieved—but for one detail.

  Dr. Dunn informs us that the tumor appears to be metasta
tic melanoma. We’ll know for sure in a few days after we get the results from the lab. In the meantime, all we can do is stew over the idea that, just as we feared, I am most likely battling this dreaded type of cancer all over again.

  Melanoma is the rarest but most dangerous form of skin cancer, diagnosed in about 130,000 people each year, most of them fair-skinned like me. It develops from melanocytes, skin cells that carry a dark skin pigment called melanin, which protects deeper skin layers from the damaging effects of the sun. Many melanomas begin as moles, harmless growths of melanocytes that can turn cancerous over time. Once that happens, melanoma has a propensity to metastasize, often spreading from its original site in the skin to lymph nodes and organs, especially the lungs, liver—and brain. When it spreads there, it’s almost invariably terminal.

  For all we know, I’ve been handed a death sentence.

  We have no doubt I’m going to die. My family and doctors and I are certain of it. We don’t discuss it aloud, but the terrible reality of it lingers among us.

  That night, Thursday, January 29, my exhausted family heads to my sister’s house while I stay in the hospital to recuperate. As I lie in bed, I feel no pain—but I cannot sleep. I’m loaded with steroids to prevent swelling in my brain, and one of the side effects is insomnia. I’m wide awake, my mind exploding with memories.

  In this dark hour, the intensive care unit nurse who is monitoring me pulls up a chair next to my bed and sits down. As the snow falls outside the window, words spill out of me. I tell her things I’ve never shared before, painful stories I thought I’d left behind in Poland. I talk all night.