Surviving cancer without the positive thinking

The author of a new book says she didn’t beat her disease—science did

Mary Elizabeth Williams was just 44, a staff writer at Salon and a mother of two who was freshly reunited with her husband (from whom she had separated two years earlier), when she noticed a bump about the size of a pencil eraser on her scalp. It didn’t hurt. It didn’t itch. “I’m sorry to tell you this,” her dermatologist said, “but you have malignant melanoma,” a cancer that kills some 10,000 people annually.
Back then, in 2010, her tumor was only Stage 2. But a year after it was removed—along with a chunk of her scalp—the disease came back. This time it was Stage 4; there is no Stage 5. Her long-term prognosis? She could have as little as six months to live.
Then she got lucky: She qualified for a clinical trial at New York’s Memorial Sloan Kettering Cancer Center, testing drugs that were supposed to harness a patient’s immune system against the disease. As the first line of her new memoir reveals, “Spoiler: I lived.”
Written with candor, humor (“Don’t think of it as losing your hair—think of it as a full-body Brazilian!”), and just the right amount of rage, Williams’s book, A Series of Catastrophes and Miracles, is about the ravages of metastatic disease and the innovations of science, but it’s equally about resilience. Most of all, perhaps, it is about women’s friendship: Williams’s college roommate, Debbie, died of ovarian cancer right when Williams learned that she herself was cured.
On the day Williams spoke with me, she had just lost another friend to cancer, a 24-year-old law school graduate who had begun a treatment program similar to the one that had saved Williams. “It sucks,” she told me. “It fucking sucks.”
Having been through treatment for breast cancer twice—and lost my mother to pancreatic cancer earlier this year—I understood that sentiment all too well. Here, Williams talks about living with late-stage disease, her experience with the sometimes hollow, feel-good culture of cancer activism, and how, despite all the bleakness, she found beauty.
Orenstein: Many cancer memoirs are written by people with early-stage disease who, no surprise, survive. How is your book different?
Williams: Even within the cancer community, a lot of advocacy groups don’t want to talk about people with Stage 4 disease. They want that inspirational story of “I kicked cancer’s butt!” If it’s a darker scenario, or just a more complicated one, you are ignored. That frustrated me as a person and as a reader. I wasn’t seeing stories about people who were living [with the disease] like I was. It’s not my fault that I got sick or that I got better either, but I want to always respect that I have a privilege that so many, including people I loved, do not.
Orenstein: What was it like to find out that you had Stage 4 cancer?
Williams: It was surreal. You leave your body for a time. When I hear about people who are Stage 4 for years … How do you basically live on death row never knowing whether you’re going to get a reprieve from the governor or if you’re going to get sent to the chair? And you can’t just stop doing your regular life. You have to take care of your kids. You have to do your job. You have to do your laundry.
Orenstein: You can’t sit around and wait to die.
Williams: Right. My kids and I got lice right after my second diagnosis. Maybe that’s why laundry is uppermost in my mind. I did so much laundry. And you want to do that everyday stuff, until you become really incapacitated. I certainly saw that with my friend Debbie. You want to hang out with your friends. You want to read a book. You want to do whatever you can.
Orenstein: Do you feel survivor guilt over your friend’s death?
Williams: Years ago I went to a reading by an author who had served in Vietnam. I hate the whole battle metaphor, that cancer is like war, but he said something great. He said, “You go to basic training with these guys. You go in the trenches with them. You see every horror imaginable together. Then one day one of them gets a bullet through him and you don’t. And you’re happy. And then you live with that for the rest of your life.” That’s what it is: It’s the guilt of being happy. I get to live my life. I get to listen to music and eat cake—and Debbie doesn’t. Of course I feel guilt. And that’s okay. It’s not my fault that I got sick or that I got better either, but I want to always respect that I have a privilege that so many, including people I loved, do not.
Orenstein: What’s the experimental therapy that is responsible for your being here?
Williams: Immunotherapy is different from conventional cancer treatment—surgery, radiation, and chemo—which will probably one day be looked back on as barbaric. The way that cancer works is that it scrambles the signals of your body’s defenses and confuses your immune system, allowing the mutant cells to multiply. What immunotherapy does is override that confusion so your [your immune system goes] after the cancer anyway. There are different kinds of immunotherapy. There are vaccines in development. There’s adoptive T-cell transfers, where a patient’s cells are collected, re-engineered and then reintroduced into the body to fight cancer. It’s brilliant, but you can understand why discovering this took decades of trial and error. And a lot of immune therapy comes out of the lessons of other forms of immune treatment, including AIDS research.
Orenstein: How quickly did it work for you?
Williams: A tumor had grown on my back, and after my first treatment, I could actually see it shrinking. [Now that the FDA has approved this drug therapy,] the next challenge is figuring out why it works for some of us and not for others. During treatment I put up a poster in my bedroom that says, “When the odds are a million to one, be the one.” But you know what? I don’t want to be the only “one.”
I try to see the beauty in all the damage. I try to see the beauty in all the ruin.
Orenstein: You were raising two kids while going through all this. How did you handle being both a patient and a parent?
Williams: My husband and I were always transparent with the kids. They saw me cry; they saw me get scared. We used words like died rather than passed away. Now I see the kids as these amazing, compassionate, clear-eyed people who know how to comfort others and who have made space in their life for death. That is so unusual in our culture. I want my kids to have a relationship with the fluidity of life—with the fact that sometimes people get sick and sometimes bad things happen, and to know that within that there is also grace, there’s also beauty, there’s also comfort. Because if you go down into the depths, there is treasure there. Cancer still sucks, but there’s also profound connection. It’s the privilege of allowing yourself to participate in the full experience of humanity, which includes grief and sickness and death. If you don’t look at [those things], you’re not living.
Orenstein: At the same time, you never romanticize illness in the book. And from the day you show up at the doctor’s in a T-shirt that says FUCK CANCER, you resist what I think of as the tyranny of the positive attitude.
Williams: There’s this assumption that because you got better, you did it courageously. But that’s not my story. I didn’t “warrior” my way into getting better. It was not my achievement; it was science’s. Whenever I hear someone say “I beat cancer,” it just feels so disrespectful to others, such as my friend Debbie. It divides us into winners and losers. I know it’s not deliberate. We want to make meaning. We want to make sense of it. But you see how random [survival] is. I have known people who were healthier than me and younger than me who tried, I think, harder than I did to fight their cancer but who didn’t live.
Orenstein: Tell me the significance of the butterfly on the cover of your book.
Williams: The story is about losing something—yourself, people you loved, what you thought you knew about the world—yet still being whole. Butterflies are all about transformation. I try to see the beauty in all the damage. I try to see the beauty in all the ruin. And I definitely see the love.     —The Atlantic

Surviving cancer without the positive thinking

The author of a new book says she didnt beat her disease—science did

Mary Elizabeth Williams was just 44, a staff writer at Salon and a mother of two who was freshly reunited with her husband (from whom she had separated two years earlier), when she noticed a bump about the size of a pencil eraser on her scalp. It didnt hurt. It didnt itch. Im sorry to tell you this, her dermatologist said, but you have malignant melanoma, a cancer that kills some 10,000 people annually. Back then, in 2010, her tumor was only Stage 2. But a year after it was removedalong with a chunk of her scalpthe disease came back. This time it was Stage 4; there is no Stage 5. Her long-term prognosis? She could have as little as six months to live. Then she got lucky: She qualified for a clinical trial at New Yorks Memorial Sloan Kettering Cancer Center, testing drugs that were supposed to harness a patients immune system against the disease. As the first line of her new memoir reveals, Spoiler: I lived. Written with candor, humor (Dont think of it as losing your hairthink of it as a full-body Brazilian!), and just the right amount of rage, Williamss book, A Series of Catastrophes and Miracles, is about the ravages of metastatic disease and the innovations of science, but its equally about resilience. Most of all, perhaps, it is about womens friendship: Williamss college roommate, Debbie, died of ovarian cancer right when Williams learned that she herself was cured. On the day Williams spoke with me, she had just lost another friend to cancer, a 24-year-old law school graduate who had begun a treatment program similar to the one that had saved Williams. It sucks, she told me. It fucking sucks. Having been through treatment for breast cancer twiceand lost my mother to pancreatic cancer earlier this yearI understood that sentiment all too well. Here, Williams talks about living with late-stage disease, her experience with the sometimes hollow, feel-good culture of cancer activism, and how, despite all the bleakness, she found beauty. Orenstein: Many cancer memoirs are written by people with early-stage disease who, no surprise, survive. How is your book different? Williams: Even within the cancer community, a lot of advocacy groups dont want to talk about people with Stage 4 disease. They want that inspirational story of I kicked cancers butt! If its a darker scenario, or just a more complicated one, you are ignored. That frustrated me as a person and as a reader. I wasnt seeing stories about people who were living [with the disease] like I was. Its not my fault that I got sick or that I got better either, but I want to always respect that I have a privilege that so many, including people I loved, do not. Orenstein: What was it like to find out that you had Stage 4 cancer? Williams: It was surreal. You leave your body for a time. When I hear about people who are Stage 4 for years How do you basically live on death row never knowing whether youre going to get a reprieve from the governor or if youre going to get sent to the chair? And you cant just stop doing your regular life. You have to take care of your kids. You have to do your job. You have to do your laundry. Orenstein: You cant sit around and wait to die. Williams: Right. My kids and I got lice right after my second diagnosis. Maybe thats why laundry is uppermost in my mind. I did so much laundry. And you want to do that everyday stuff, until you become really incapacitated. I certainly saw that with my friend Debbie. You want to hang out with your friends. You want to read a book. You want to do whatever you can. Orenstein: Do you feel survivor guilt over your friends death? Williams: Years ago I went to a reading by an author who had served in Vietnam. I hate the whole battle metaphor, that cancer is like war, but he said something great. He said, You go to basic training with these guys. You go in the trenches with them. You see every horror imaginable together. Then one day one of them gets a bullet through him and you dont. And youre happy. And then you live with that for the rest of your life. Thats what it is: Its the guilt of being happy. I get to live my life. I get to listen to music and eat cakeand Debbie doesnt. Of course I feel guilt. And thats okay. Its not my fault that I got sick or that I got better either, but I want to always respect that I have a privilege that so many, including people I loved, do not. Orenstein: Whats the experimental therapy that is responsible for your being here? Williams: Immunotherapy is different from conventional cancer treatmentsurgery, radiation, and chemowhich will probably one day be looked back on as barbaric. The way that cancer works is that it scrambles the signals of your bodys defenses and confuses your immune system, allowing the mutant cells to multiply. What immunotherapy does is override that confusion so your [your immune system goes] after the cancer anyway. There are different kinds of immunotherapy. There are vaccines in development. Theres adoptive T-cell transfers, where a patients cells are collected, re-engineered and then reintroduced into the body to fight cancer. Its brilliant, but you can understand why discovering this took decades of trial and error. And a lot of immune therapy comes out of the lessons of other forms of immune treatment, including AIDS research. Orenstein: How quickly did it work for you? Williams: A tumor had grown on my back, and after my first treatment, I could actually see it shrinking. [Now that the FDA has approved this drug therapy,] the next challenge is figuring out why it works for some of us and not for others. During treatment I put up a poster in my bedroom that says, When the odds are a million to one, be the one. But you know what? I dont want to be the only one. I try to see the beauty in all the damage. I try to see the beauty in all the ruin. Orenstein: You were raising two kids while going through all this. How did you handle being both a patient and a parent? Williams: My husband and I were always transparent with the kids. They saw me cry; they saw me get scared. We used words like died rather than passed away. Now I see the kids as these amazing, compassionate, clear-eyed people who know how to comfort others and who have made space in their life for death. That is so unusual in our culture. I want my kids to have a relationship with the fluidity of lifewith the fact that sometimes people get sick and sometimes bad things happen, and to know that within that there is also grace, theres also beauty, theres also comfort. Because if you go down into the depths, there is treasure there. Cancer still sucks, but theres also profound connection. Its the privilege of allowing yourself to participate in the full experience of humanity, which includes grief and sickness and death. If you dont look at [those things], youre not living. Orenstein: At the same time, you never romanticize illness in the book. And from the day you show up at the doctors in a T-shirt that says FUCK CANCER, you resist what I think of as the tyranny of the positive attitude. Williams: Theres this assumption that because you got better, you did it courageously. But thats not my story. I didnt warrior my way into getting better. It was not my achievement; it was sciences. Whenever I hear someone say I beat cancer, it just feels so disrespectful to others, such as my friend Debbie. It divides us into winners and losers. I know its not deliberate. We want to make meaning. We want to make sense of it. But you see how random [survival] is. I have known people who were healthier than me and younger than me who tried, I think, harder than I did to fight their cancer but who didnt live. Orenstein: Tell me the significance of the butterfly on the cover of your book. Williams: The story is about losing somethingyourself, people you loved, what you thought you knew about the worldyet still being whole. Butterflies are all about transformation. I try to see the beauty in all the damage. I try to see the beauty in all the ruin. And I definitely see the love. The Atlantic