The next morning, Witek and Cheyenne are the first to arrive. In the quiet of my hospital room, I share these stories with them too. I’m sure I am going to die, and I want them to know my history, which is their history as well. I especially want Witek to know more about his father, Witold, a brilliant computer scientist.
I also have a selfish reason for telling these stories: I need to express my fear about what is happening within my body, to give voice to the family history that is now repeating itself in the most painful way. Because when my son was only seven years old, his father died of the very type of cancer I now appear to have: melanoma that metastasized to the brain.
Witek was still a toddler and his sister, Kasia, a five-year-old when my husband told me the news. It was June 1980, a hot and sunny day in Warsaw, Poland. I was twenty-nine years old, a young wife and mother, cutting up vegetables to make dinner, when Witold walked into our home, his face contorted with fear.
The words that poured from him were so dreadful I could barely process them. Earlier in the day he had gone to the local hospital to see a dermatologist after spotting a dark mole on his back. The doctor had taken one glance and announced that Witold had melanoma.
“He said I’m going to die,” Witold said. “Eight months, at best.”
I wanted to scream but no sounds came out. Finally, I shouted, “He must be wrong!”
Surely the doctor was just another quack, one of the many awful medical professionals in the health-care system in Communist Poland. One look at Witold told you that he was perfectly healthy. He was handsome, broad-shouldered, and muscular, a swimmer and runner at a time when almost no one else in Poland ran for exercise. We were a beautiful young family with two picture-perfect children. By Polish standards, we were well-to-do, accomplished, and worldly. We had just spent the 1978–1979 academic year at the University of Illinois at Urbana-Champaign, where Witold had studied on a Fulbright scholarship. We had ambitious plans for our future. Cancer was not among them.
Early the next morning, we rushed to the same Warsaw hospital demanding to be seen. The doctor was solemn and cold as he repeated his original diagnosis: Witold would die within months. “There is no cure,” he said. “Prepare yourselves.” I felt faint. A nurse pressed a Valium into my palm and ushered us out the door.
“We’re not going to tell anyone about this,” Witold whispered as we lay in bed that night. In Poland at the time, cancer carried a stigma. Even among our enlightened and educated friends, it was viewed as a sign of weakness and loss of control over one’s life. Talking about it was taboo.
A few days later, an oncologist confirmed that Witold had melanoma and scheduled immediate surgery. Within weeks, the melanoma had been excised and my husband had begun chemotherapy.
The infusion unit in the Institute of Oncology on Wawelska Street in Warsaw was frightening and depressing. To make matters worse, we—like most people at the time—knew almost nothing about chemotherapy. No one told us what to expect or what the treatment was intended to accomplish. Doctors and their staffs didn’t communicate with patients, and families were left completely to their own devices. In those years before the Internet, there was no easy way to get information. I was very aware, however, that our situation was grim. Cancer, especially melanoma, was considered a terminal disease. Very few lived through it.
But the weeks passed and Witold did not die. After surgery and several rounds of chemo, he returned to his normal life, and quickly, I started to forget that his cancer had ever appeared. I did more than forget; I deliberately kicked his illness out of my consciousness. I shoved it into a dark corner of my mind, covered it with layers of superficial happiness, and nailed it shut with vodka and partying.
Still, the nightmare of his disease—no matter how deeply submerged in my unconscious—hung over us. Witold grew more and more withdrawn, and in our denial of the seriousness of his illness, we pushed each other away. I was scared, as much as I tried to believe I wasn’t. Fear fueled our isolation, and we drifted farther apart.
By the end of 1981, the political situation in Poland had come to mirror my deteriorating marriage. That December, the Communist government declared martial law in an attempt to crush mounting political opposition inside the country, drastically limiting the freedom of Poles and sending the nation’s already wobbly economy into a tailspin. The streets of Warsaw were blocked with tanks and patrolled by Polish soldiers in full military gear. On freezing nights, they warmed themselves at makeshift fires that bloomed across the dark city. It was an alien world to us, frightening, practically a war zone. Long lines of people waited for food in front of empty stores, soldiers at checkpoints examined IDs, people rushed home before curfew for fear of being arrested, friends were thrown into jail.
By the time I fell in love with another man, Mirek, my marriage with Witold was all but over. I consoled myself with this fact each time I fell into Mirek’s arms; his steady presence was exactly what my children and I needed. Witold took the news of my infidelity hard. He disappeared from our lives by moving to France and he visited the children only a few times over the next two years; crossing back and forth to the West wasn’t easy.
On one visit, as he was leaving my apartment, Witold turned in the doorway and told me I was a great mother, that I had always been such a strong force standing unconditionally by our children, and that he envied my conviction and dedication to them. He was sad, warm, and humble. He kissed me goodbye, his first friendly gesture in years.
I had no way of knowing it then, but those would be Witold’s last words to me. In May 1985, a few months after that visit to Warsaw, he died in a hospital in Bordeaux, France. The cancer had metastasized to his brain. At that time, there was no cure for that kind of brain cancer.
When I got the news, I shook uncontrollably, and the children wept when I told them. They were too young for a funeral, I decided along with my family and Witold's, so I went alone. Later, when I tried to bring up their father’s death, they didn’t want to talk about it. Over the years, we simply did our best to move on, each of us in his or her own way. But Witold’s death still hovers over all of us, and melanoma carries an especially potent meaning for our family.
By Sunday, February 1, 2015, three days after my surgery, I’ve healed enough to be released from the hospital. Mirek and I head to my sister’s house, where I continue recuperating while remaining close to my doctors.
Still full of steroids to keep my brain’s swelling at bay, I feel like a superhero with limitless powers, a wild woman on stimulants—driven, driven, driven. From Boston, I send a series of e-mails to the administrative, clinical, and scientific directors of the NIMH, telling them all the things I want them to know in case I die. The e-mails make sense but there are a lot of them, and they are long and very detailed, a sign of my steroid-fueled manic energy.
I can’t stop the flood of thoughts. I can’t stop talking and writing. I write pages and pages about my life. I need to make sure that all that I am and have been doesn’t disappear should this disease take me. And the chances are very high it will. Despite my physical fitness, my passion for life, and my deep love for the people around me, I am going to die, and probably soon. I know it and my family knows it. Training for the Ironman is over. My life as I’ve known it is over.
But I am not going down without a fight, and, strangely, I’m feeling optimistic. Since my first husband’s death from melanoma, I’ve kept up to date on the latest research about this terrible disease. Every time I read about another medical advance, I think about Witold and wonder, What if he’d survived long enough to receive this treatment? Would he still be alive today? It is heartbreaking to think that the astonishing advances in this field came too late for him.
The newest and most promising front in the battle against cancer is immunotherapy. This cutting-edge treatment uses the body’s own defenses to fight the disease, empowering the immune system to recognize and destroy cancer cells that would otherwise evade it. Research organizatio
ns, scientific journals, and even newspapers and TV news programs are touting immunotherapy as the most exciting and encouraging advance in cancer treatment in decades, perhaps in all of medical history.
My melanoma oncologist, Dr. Hodi, who treated me in 2012 when they found the melanoma on my neck, is a renowned expert in cancer immunotherapy. Although we’re still waiting for the lab results, based on Dr. Dunn’s evaluation, Dr. Hodi has no doubt that I have metastatic melanoma. After I recover from my surgery and undergo radiation therapy, we will discuss additional treatment options. Will immunotherapy be among them? This is my fondest hope—but I also know it’s a long shot. At this point, in 2015, there are scant reports on the effectiveness of immunotherapy in treating brain tumors, and the latest drugs haven’t been applied yet to metastatic melanoma in the brain. For all I know, people like me are doomed.
I could easily despair. But years ago, I learned an important lesson from an unlikely source: Lance Armstrong. In 2007, my father was dying from colorectal cancer, and I flew back and forth from the United States to Poland to take care of him. I did a lot of reading on the very long flights, including, one night, Armstrong’s memoir about surviving cancer, It’s Not About the Bike: My Journey Back to Life.
At the time, my own battles with cancer were still in the future, but I wept as I read Armstrong’s book all the same. I identified with his competitive spirit and was deeply impressed with his approach to dealing with his disease, especially when it seemed there was no hope and he was destined to die young. When some doctors gave up on him and he didn’t have health insurance or the money to pay for treatment, Armstrong taught himself about his particular type of cancer, testicular cancer that metastasized to his lungs and brain. He then found the best institution and specialists in the United States for treating it.
You must be your own best advocate, Armstrong insisted. You can’t rely solely on your doctors or your family or anyone else; you have to stay on top of your own care, no matter how sick or exhausted you feel. Learn everything you can about your disease and your diagnosis, locate the very best doctors, find out exactly what drugs and treatments your doctors are giving you and what they’re supposed to do, never stop researching and asking questions, and check, check, check what the doctors tell you—get second and third opinions. All of this is up to you because ultimately no one else—not your family members, who love you, or your doctors, who want you to survive—is responsible for your health. You need a support team, of course, but in the end, you run this race on your own.
The comparison to a race is no idle metaphor. In high-level athletic competitions, as Armstrong wrote, suffering is part of the process. A high tolerance for pain, both mental and physical, gets you across the finish line. As a marathon runner and triathlete, I understood exactly what he meant when I read his book eight years earlier. Now, faced with the most daunting challenge of my life, I know that the athletic competitions I love so much are the very best preparation for enduring what lies ahead and, perhaps, surviving it.
I am getting ready for the competition of a lifetime. I have a high tolerance for physical punishment, and I have trained myself to never give up, no matter what. As I face this disease yet again, now in its deadliest form, that attitude—I will do this, I will make it—becomes my lifeline. Excellent health care and unwavering perseverance saved Armstrong’s life. I’m hoping it will save mine. The stakes are the highest they can be. Living—that’s the ultimate win.
And so, although the odds of my survival seem slim, my family and I set out to learn everything we can about metastatic melanoma. Luckily, we are well equipped for this project: Witek is a neuroscientist, Kasia is a physician, my sister, Maria, is a physicist working in radiation oncology, and Mirek is a brilliant, logical, cool-headed mathematician. Together, we study the mechanisms of metastatic melanoma and the best treatments available. We scour medical journals for the latest studies, and we visit doctor after doctor.
I am, of course, terrified at the thought of my own death. But I do not allow myself to get depressed. I don’t curl up in a ball or cry. That would drain precious energy that I need if I’m going to have any chance of survival.
It’s not the first time I’ve refused to give up easily. Before I began chemotherapy for breast cancer six years ago, an acquaintance called to inform me that the mastectomy would be horribly painful and the chemo would leave me so depleted that I wouldn’t be able to move. She said that she was sending me a gift that I would need. A few days later, soft, polka-dot pajamas arrived in the mail along with a note offering her best wishes and telling me to prepare to spend a lot of time in bed.
While I appreciated the gift and the wishes, she couldn’t have been more wrong.
After my breast was removed, I did stay in bed—for two or three days. By the fourth day, I was up and walking outside, eager to get back to the business of life. I’d resolved to ignore my pain and discomfort as best I could and focus on recovery. I couldn’t stand to look at the pajamas, so I gave them away.
This episode has become a running joke in our family. When I received my new diagnosis, Mirek and my children asked, “Should we send you polka-dot pajamas?” Not a chance, I thought.
I have no intention of feeling sorry for myself. Self-pity destroys my composure and sucks up my energy more than anything else.
But I also don’t realize how bad things are about to get.
In mid-March, roughly a month and a half after my neurosurgery, a series of MRIs show new small lesions—areas of abnormal tissue—in several brain regions. They are most likely tumors, although it’s hard to tell from the MRI alone.
Witek, I, Kasia, and Jake go cross-country skiing outside Boston exactly one month after brain surgery to remove the tumor in my occipital cortex.
Dr. Aizer, my radiation oncologist at the Brigham, believes that stereotactic radiosurgery (SRS) is the best option for the tumors. SRS focuses high doses of radiation onto individual tumors with the goal of withering them into oblivion. Another approach is whole-brain radiotherapy, in which the entire brain receives a somewhat lower dose of radiation. But Dr. Aizer says whole-brain radiotherapy is not the best option for melanoma because high doses of radiation are required to kill these particularly aggressive cancer cells. Anyway, I do not want to consider that sort of scorched-earth approach. Radiation is not a benign procedure, after all; its purpose is to kill cells, and it doesn’t discriminate between cancer and healthy cells. The thought of having my whole brain bathed in neuron-destroying radiation horrifies me.
For some patients with advanced brain melanoma and many brain tumors, SRS is not viable—there are just too many sites that would need high-energy radiation. This could lead to dangerous brain tissue damage, which of course worries me very much. Fortunately, at this point I have few enough tumors that the targeted approach of SRS just might work. And so I am strapped onto a gurney with a custom-made facemask to hold my head in place, and we shoot the few small tumors with precise, high-energy radiation beams in the hope that they will wilt into nothingness.
But targeted radiation therapy is not a permanent solution. If new tumors continue to appear—as they clearly are—my brain will soon be riddled with deadly lesions. The doctors will stop the radiation treatment because it will be futile; there is a limit to how much radiation a brain can withstand without permanent damage. The tumors will continue to grow, pressing on my brain and causing swelling in the tight compartment of my skull. Eventually I will fall into a coma, and finally—when the swelling squeezes the brain stem at the bottom of my skull, cutting off my ability to breathe—I will die.
I have to do something dramatic, find something cutting edge that might save my life. Without some sort of novel, more aggressive treatment, I will be dead in a matter of months. My family and I continue to read every new study that’s published in the medical journals. We visit melanoma specialists in Boston, clinicians and researchers, gathering information and analyzing their advice. Secretly, I also hold out
hope that my melanoma oncologist, Dr. Hodi at Dana-Farber, will recommend some sort of phenomenal new immunotherapy treatment.
Yet when we next visit Dr. Hodi, whom I have not seen since shortly after my brain surgery, he is solemn upon hearing that I have additional brain tumors. To my disappointment, he says he’s not sure that immunotherapy is right for me at this time. Doctors don’t know yet if it’s successful in treating advanced melanoma in the brain, he explains. I suspected as much from my own research. At the end of the visit, Dr. Hodi mentions the opportunity to join a clinical trial in Boston. But I have doubts about whether to go this route, not least because of the difficulty of participating in a trial so far from home.
We really don’t know what to do next. So we continue our search and visit Dr. Keith Flaherty at Massachusetts General Hospital, a warm and knowledgeable doctor in a bow tie who spends an hour and a half explaining the new treatments for melanoma. Not only is he a specialist in targeted therapy—a promising treatment that targets specific molecules in cancer cells—but he’s an expert in treating specific mutations in melanoma. Despite Dr. Flaherty’s experience with targeted therapy, he suggests that I try immunotherapy first. He tells us about a clinical trial in immunotherapy for patients with melanoma brain tumors that is just about to open at Georgetown’s Lombardi Comprehensive Cancer Center under the direction of a highly regarded oncologist, Dr. Michael Atkins—the same oncologist my breast cancer doctor recommended when my brain tumors were discovered in January.
“Dr. Atkins is very good. I’ve worked with him,” Dr. Flaherty tells us. “You should be treated there. It will be very convenient since you live in that area, and he’s a great doctor.”
Given my poor prognosis, my family and I agree that the best approach is to attack the melanoma with every possible weapon: radiation, immunotherapy, and then, perhaps, targeted therapy. “If you get all of those, it’ll be like we’re throwing the kitchen sink at you,” Dr. Flaherty says with an encouraging smile.
The Neuroscientist Who Lost Her Mind Page 6