The Neuroscientist Who Lost Her Mind

by Barbara K. Lipska

  As we mingle with the guests, I recognize Dr. Atkins’s nurse Bridget, whom I first met when I entered the clinical trial a year ago. She compliments me on how healthy I look.

  “Do you remember that day in Dr. Atkins’s office when you all gathered around me and broke the terrible news that my brain tumors had grown and were pressing on my brain?” I ask her. “That there seemed to be no hope? And then you started to cry?”

  “I will never forget it,” she says. “I’m so sorry I cried. I should have stepped out of the office.”

  “No, no,” I say. “It was so human, and strangely, it gave me strength to see that other people do care, do feel for me, and would be sad if I died. We are social animals. We should feel for each other, cry for each other. There’s nothing wrong with showing our emotions. I only wish that it happened more often.”

  I speak briefly with the wife of a survivor. Her husband, a grandfather of eight-month-old twins, had tumors that quickly disappeared after immunotherapy. She tells me that she’s so happy that he will have the chance to get to know the twins and enjoy being a grandfather. “He is such an optimist,” she says. “I’ve seen him suffering badly from the side effects of the drugs. He almost died from them but he never complained.”

  Dr. Atkins gives a short presentation about the immunotherapy with which we, the survivors, have been treated. The immunotherapy clinical trial is very successful, he says; the vast majority of us survivors are expected to live for some time. And only one patient in the trial has died, he adds.

  “Several years ago there would be no luncheon like this,” Dr. Atkins says, “because most of you would likely be dead.” His words may strike some people in the room as harsh but he is telling the truth: were it not for the immunotherapy he administered, I would certainly not be here today, and the same goes for many of the people gathered here. Before this miraculous new treatment, the majority of patients with advanced melanoma had no chance of survival. Immunotherapy is, indeed, a miracle cure, and not just for melanoma but for a number of other cancers too. It doesn’t work for everybody yet, and it may not work forever except for the luckiest of patients. But it works. We survivors of advanced melanoma are living testimony.

  We have many questions when he finishes; mostly, of course, about our own fates. How can we make sure that the disease does not come back? “There are no guarantees. You’ll need to come frequently for medical checkups,” he says. Since there’s a hereditary link in melanoma, what can we do to protect our children? “Currently there is nothing we can do but protect our children from sun and make sure they always wear sunscreen,” he advises. Do a positive attitude and a strong will to live affect survival? “Perhaps,” he says. “They certainly don’t hurt. We don’t know very much about the influence of will on survival.” How can other melanoma patients—those not lucky enough to be in the clinical trial—afford the extraordinarily expensive immunotherapy drugs? “We have no answers to that yet,” he says. “It obviously depends on the insurance you carry.” How can patients deal with toxic, sometimes life-threatening side effects of this treatment? “We are trying to provide as much expertise from other medical fields as possible to deal with side effects, but sometimes this help is inadequate,” he says.

  A photographer takes pictures of all of us with Dr. Atkins and his medical team. It feels like a graduation photo. We have persevered. We have remained functional or usable. We are true survivors.

  At the end of May 2016, after several scans that reveal no new tumors, I stop taking trametinib. It’s a huge relief—and a big cause for concern. The horrible rash that I’ve continued to suffer from disappears almost instantly, and I feel better. But what will happen inside my skull now that I’m off medication? Will the tumors resurge and attack? Dr. Atkins seems confident that the melanoma cells in my whole body have been defeated and that they have, as he says, “stopped seeding”—spreading through my bloodstream into the rest of my body. It’s reassuring to hear that my cancer may be eradicated for good. But without the drugs I feel like a white-water kayaker without a life jacket.

  Another tumor appears at the end of July 2016, after I’ve gone several months without treatment. It’s in my cerebellum, the region that controls voluntary motor movements, but it’s so small it causes no symptoms. A few weeks later it gets zapped with the CyberKnife.

  Throughout the summer of 2016, I slowly return to my former self. I run and swim and cycle, and I travel with Mirek to visit my family in their own homes. It’s a nice change to be able to go away, so heartening to no longer be the seriously ill mother and sister they came to see as often as possible—never knowing whether each time would be the last.

  But although I am tumor-free for now, another disaster is brewing in my head: brain tissue necrosis, the delayed and potentially fatal effect of radiation. Necrosis occurs when an area of dead tissue forms at the site of a brain tumor after radiation therapy and the surrounding tissue doesn’t heal. It is more prevalent among cancer patients these days than it once was because of the increasing use of SRS and CyberKnife techniques combined with immunotherapy; the two procedures work synergistically to destroy tumors but also destroy surrounding healthy tissues.

  The symptoms of brain tissue necrosis may not appear until a year or longer after radiation treatments. It’s been fourteen months since I received a series of radiations for my tumors. So in a sense I am right on time when, at the end of August 2016, the site of the biggest tumor, in my frontal cortex, begins to act up.

  As I’m getting ready for a hiking trip in the White Mountains in New Hampshire with Maria, I notice a blind spot at the top of the visual field in my left eye. At first, I don’t pay it much attention. Maybe it’s a slight cataract, I think, and I try to ignore it into oblivion. But within a few days the vision in my left eye deteriorates as rapidly as if a curtain is being lowered from the top to the bottom of my eye. From day to day, it gets worse and worse. My doctor orders an emergency MRI of my brain and eyeballs. The scans confirm what we suspected: the problem is not the eye itself but my optic nerve. Aftereffects of radiation to the frontal cortical tumor, which was very close to my left optic nerve, have destroyed the nerve. I am diagnosed with irreversible optic neuropathy, total blindness in my left eye. There is no cure. I will have to learn to live with one eye.

  Two days later, I fly to Boston and meet my sister. We are ready for a three-day hike. At the last moment, I decide to buy trekking poles at REI in case I have trouble with my balance. They are very light and comfortable and turn out to be my lifesavers during our challenging trip. We hike up rocky and steep Mount Washington. Being blind in my left eye, I no longer have depth perception. At the start of our trek, it’s very hard for me to estimate the inclines, and I fall frequently. I have trouble climbing, and it’s even worse going downhill. I trip and stumble. But in very short order, I adjust. We successfully and joyously complete our planned route through the mountains and our three days of hiking.

  Back home in Virginia, I have to relearn so much. How to run without stumbling—many times I return from my daily run with bloody knees and palms. How to cycle—I add a side mirror to my bike so I won’t crash into objects on my left. How to type and read in my new off-center world. How to drive my car—I rotate my head so far around before changing lanes that Mirek jokes I’m becoming an owl. I also learn to ski without depth perception. I downgrade myself from expert-level, double-diamond runs to single-diamond trails. Fortunately, swimming is easy. I don’t bump into anything but water and just follow the line at the bottom of the pool.

  It’s a slow process, but my memory continues to come back, especially as I begin to write this book in the spring of 2016. As I reflect on the two months of my journey and try to piece together what happened, I can grasp little bits here and there and often recall entire episodes.

  But when I ask my family questions to help me fill in the gaps, they usually don’t want to talk about it. Mostly they say they can’t recall, and I think they are tellin
g the truth. It is too traumatic for them to relive. It’s as if they don’t want to resurrect the version of me who was so unkind, the version they worried would be their final memory of me.

  In the spring of 2017, Kasia asks Sebastian if he remembers the time I was mean to him. It’s been two years since it happened, and Sebastian is now ten years old. He’s grown into a tall, thin kid with a tremendous talent for running. He tells his mom he doesn’t know what she’s talking about. He doesn’t remember anything like that at all.

  In truth, conjuring up the images of those episodes isn’t easy for me either. I’m still embarrassed at how I treated Theresa during my first physical therapy appointment, even though I couldn’t help it and she immediately forgave me. I wince at how I behaved with Sebastian and Kasia and Witek. And with Mirek, especially. There is trauma still embedded in my mind, a fear that I may again explode without any warning and become a brute whom people will want to avoid. These worries that I won’t be able to control my behaviors, that there is so much unpredictability lurking in me, don’t go away. They’re now part of who I am.

  These days, long after the Nina Simone documentary and the grand opening of the grocery store, I still tremble at the memories of those lights and noises, the loud music, the sharp whites of piercing life, the black ghosts of death. During that emotional movie, a death thought came upon me like a hungry tiger. Throughout my ordeal, I was never consciously afraid of dying, and I believed that death was simply our longest sleep, absent of nightmares. No pleasures, nothing. Yet looking back, I’m surprised that I remained calm and composed through so many near-death experiences. The fact that I was so often not fully aware of what was happening to me was a kind of protective obliviousness, I’m sure. But during the infrequent periods when I reflected on the thought that I might die soon, I knew that I had lived a fulfilling life, and that insight gave me strength and peace. Today, as before, my passion to stay alive and my readiness to die are intermingled.

  I continue to worry about my mind. My brain will never be as it was before. It has been injured by tumors, shot through with radiation, assaulted with drugs. It is scarred, figuratively and literally. And since my brain is different, I am not exactly the same person that I was before the illness. But strangely, I feel completely myself. Perhaps my brain has resculpted its damaged connections or rerouted them in some grand effort to reinstate their original structure and function. Or maybe I just don’t see the changes in myself, in this new normal, in the new self that I have embraced. My family thinks that the truth probably lies somewhere in between—but we will never know.

  In one regard, at least, I am different than I was before: I’ve become more aware of living. I try harder than ever to find meaning in ordinary things every day. When I look at trees swaying in the wind, petals from the blooming bushes in our yard scattered on the ground, I think, The world is so beautiful. I’m so happy I’m living when I could be dead.

  In the foreseeable future, and perhaps for as long as I live, there will be more brain scans, more tests, and the anxiety of waiting for results. There may be unexpected, undesirable findings followed by more treatments. I am competing with a particularly wicked and perverse opponent, an illness that is very hard to beat. It feels like an Ironman competition that demands, in addition to the latest scientific achievements, an iron will, body, and mind. In this race, I’m not rushing to the finish line because there isn’t one. There are no medals or trophies to earn, no accolades, no cheering. There is only the deep satisfaction of another day lived, another day with the people I love.

  Epilogue

  I resolved not to compete in any races, at least not in the near future, in order to focus on healing, family, and work. But in December of 2016, our family decides we will register for the Quassy Revolution3 Triathlon in Middlebury, Connecticut, a competition known as “the Beast of the Northeast.” Held each June, it’s a particularly tough race: 70.3 miles total, as long as a half Ironman, with hilly cycling, running, and a 1.2-mile swim in a frigid lake. We’ve never before attempted anything this difficult.

  At first, I’m reluctant to begin planning. I wonder if I’m kidding myself about being able to compete in an athletic competition. What if, in the next few months, I develop new tumors? What if my brain swells again? How can I be sure that I’ll be in good enough physical shape by June to take this on—or that I’ll even be alive? But I don’t share my fears with anyone. The rest of the family is so excited about the prospect of all of us—me, in particular—returning to the races that after a few days, I give in and start to train.

  I know that I won’t be able to do the entire triathlon by myself, as I planned to do back in January 2015, before my brain tumors were discovered. I just don’t have the strength or stamina. So we decide that three of us will compete as a team, each of us taking one of the events: Mirek will cycle, Jake will run, and I will swim. My grandsons, Lucian and Sebastian, are excited to race in the kids’ triathlon, and Kasia will compete in the entire Quassy half Ironman by herself.

  I spend the winter of 2016 in training. I swim four times a week at a nearby pool, and several days a week I also cycle on an indoor bike and run in order to boost my energy, increase my overall strength, and attempt to return to the form I had before disaster struck. Getting back into shape is much harder than I imagined. Even though I stayed active throughout my illness, taking a long walk nearly every day and often running too, my muscles are weak. Physically, I am not the same person I used to be. I don’t have the same flexibility and balance, and with sight in only one eye, my vision is poor. Since I can’t see well, I get easily disoriented, not only in new environments but even on the familiar trails behind my house, where the ground is uneven and creeping vines trip me up.

  Despite my own doubts, over the weeks and months I continue my daily training sessions. I love to tie the shoelaces of my sneakers and run out into the chilly morning when the sun is just starting to peek through the trees and the birds are screaming their crazy tunes. When spring arrives, the intoxicating fragrance of lilacs almost knocks me out the moment I open my front door. Each day, I increase my distance and speed. I come back from these morning runs aching and tired but beaming with joy, and I gulp my hot coffee with an almond croissant, my reward.

  At the pool, I love to slip on my goggles, dive into the deep water, and swim. My arms slice through silky water, my lungs open wide to draw in the air, my rhythmic, powerful strokes propel me forward. Day by day it gets easier, smoother, becoming almost effortless. I’m not nearly as fast as I used to be, but the pleasure of the water caressing my body and the feeling of accomplishment are just the same as before.

  And then, suddenly, from nowhere, trouble strikes again.

  One afternoon in May 2017, two weeks before the race, I’m sitting in my office at NIMH when my left leg starts twitching uncontrollably. I try to hold it still but can’t. Although it’s a very short episode, lasting maybe thirty seconds, I am very frightened. I know what it means: I’ve had a small seizure. I immediately go in for an MRI, which reveals a small but disturbing crater in part of my right motor cortex, the site that controls the motor movements of my left leg and arm. Radiated almost two years ago, the spot has now turned into necrotic tissue, with dead cells and debris that are choking off healthy brain cells. That’s why my leg began twitching.

  Necrosis is a side effect of radiation, and it’s not good news. My brain is not healing well. My first reaction is that I will have to cancel the race in order to focus on healing my brain.

  Dr. Atkins prescribes steroids yet again for the inflammation and swelling in my brain that have occurred as a result of the necrosis. And he explains his long-term plan for healing the wounded brain tissue. Every three weeks, I will receive IV infusions of a drug called Avastin, which was originally developed to treat solid cancer tumors by choking off their blood supply so they stop growing. I don’t have any new tumors, but Avastin will, Dr. Atkins hopes, seal the leaking blood vessels in my brain and
stop the edema and inflammation in the wounded tissue. Nobody really knows whether it will work, he adds; Avastin has been used only occasionally to heal post-radiation wounds like mine, and the outcomes are not yet clear. But there is no other treatment to try, he tells us, so we must simply hope for the best.

  When I mention the upcoming Quassy triathlon, Dr. Atkins says he doesn’t want me to swim in the lake. He asks a rhetorical question: “What if you have a seizure in the water?”

  I weigh my options, and after a few days, I decide I will not cancel. I am going to swim my 1.2 miles. I call the organizers of the race and ask for help in securing a guide who can swim next to me in the lake and make sure I’m safe. A volunteer involved in the logistics of the triathlon, Daniel DeHoyos, calls me and offers to swim with me. “It would be my honor,” he says. “I’ve read your essay in the New York Times. What an extraordinary journey you’ve gone through.” Witek also rushes in to help, offering to join me the day before the competition for the training swim that competitors take to scout out the route.

  The race is scheduled for Sunday, June 4—Kasia’s birthday—and bad weather is in the forecast. On Saturday, June 3, Mirek and I make our way north by car from Virginia to Connecticut. Gray clouds roll in and a light drizzle falls. It’s becoming colder and colder. That afternoon, we reach Waterbury, Connecticut, and check into the Hampton Inn. Both Mirek and I are anxious about the potential hazards that tomorrow may bring: hilly roads slippery with rain; cold lake water that could trigger my seizures; the long distances with significant physical challenges that we each will have to endure. But we continue forward on our path of no return, and we try our strength that afternoon in training runs along the triathlon route. We drive to nearby Quassy Amusement Park. Kasia meets us there, and she and Mirek quickly disappear into the hills on their bikes. Witek has just arrived from Pittsburgh, and, accompanied by my son, I dip into the water.