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.”
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.