The good thing about having Stage IV cancer is that nobody thinks you’re bellyaching when you complain about it. It’s a field day for the discontented. You get to wander around muttering to yourself, “Stage IV cancer! Could it get any worse?”
Rilke taught us not to seek the answers but to love the questions. Good advice. Now I’m stuck in my house muttering, “Stage IV cancer during a pandemic! Could it get any—oh, never mind.”
I’m one of the people all of this social distancing is helping to stay alive, so far. I belong to the group of people—the infirm, the weak—who certain conservatives have said should offer themselves up to the coronavirus. I’m part of the “cure” that mustn’t be worse than “the problem,” according to Donald Trump. Glenn Beck seems to think we should show our patriotism by volunteering to be killed by the virus rather than “kill the country.”
I’ve come close to dying a few times, and I’m not afraid anymore, just sad. I’m like a war correspondent or an assassin—all I need is the call, and I’ll be gone in the night. I wish I had something helpful to say, now, about fear; for a long time, I was so terrified that I could hardly breathe. Somehow, you get used to it.
But if I die from the coronavirus, it will be one more unnecessary American death. Every epidemiologist in the world warned us the pandemic was coming, yet we were totally unprepared. And even after governors and public-health experts performed the astonishing feat of getting huge numbers of Americans to stay home, Trump continued to undermine them.
In March, he got bored and floated the idea that we’d all be sprung by Easter. In April, Central Park became a field hospital and refrigerated trucks were moving through New York City. Easter—victory over death—came and went. We tuned out the president, and listened only to experts. The experts said we weren’t getting out anytime soon.
When I was diagnosed with cancer, there were no smartphones. Moms had efficient little cameras in their purses; fathers carried enormous cameras with zoom lenses, which were so complicated that the dads were always missing the big moment and begging kids to restage it. Because of a mom camera, I have a photograph of the very last day of my old life.
I was a chaperone for a preschool field trip to the Los Angeles Fire Department Museum. (Of course I was; I loved everything about having little kids. I loved going to the library and to the park and to the miniature railroad at Griffith Park, and I loved watching Clifford the Big Red Dog and lying on a blanket in the front yard past bedtime, looking at the stars.) On that field trip, a friend happened to snap a picture of me talking to one of my twin boys.
I still feel sad when I look at it. There I am, so happy and—as far as I knew—healthy. And there’s my little boy on the very last day of his childhood before he had to understand frightening ideas and words. Joan Didion wrote, “It is easy to see the beginnings of things, and harder to see the ends.” But in this case, the end of things was very clear: Our life changed—and stayed changed—the day after that field trip.
Since then I have counted my life in graduations. I sat in the back row of the preschool graduation trying not to cry, which meant stopping myself from saying the words This could be the only graduation I go to. Everyone else was so happy and bustling, but I was in a far place and couldn’t get back.
The boys graduated from kindergarten the next year and I was there—knocked down from a year of treatment, bald, but starting to recover. I made it through first and second grade, and I thought maybe I could shoot for the elementary-school graduation, but when the boys were in third grade my cancer came back. That one should have got me. If it had happened a few years earlier, it probably would have. But the science was a big step ahead of me.
A long time ago, when I was still a young person without a single thought of cancer, a scientist named Dennis Slamon was sitting in his lab at UCLA and he had an idea: that one of the most aggressive forms of breast cancer, the kind marked by an overexpression of the gene HER2/neu, could be treated with an antibody called Herceptin. The story of his fight to get the research funded, and of the women who volunteered to take part in the clinical trials, has been told many times. It’s the story of a stubborn scientist who was sure he was onto something, and who wouldn’t stop until he had the funding and data to prove it.
When I was diagnosed, Herceptin had just been approved for limited use in my type of cancer. The practice where I was treated was allowed to give it to me under certain protocols: I received it with my chemo, and stayed on it for a year. That wasn’t nearly long enough.
Five years after my diagnosis, my luck ran out: a metastatic recurrence with tumors in my lungs and chest wall and liver. I pretty much assumed that was it for me. But I got a couple of good tips.
The first was from a nurse at my oncology practice, who risked his job by closing the door of the exam room and suggesting that I get a second opinion. The second one, the one that saved my life, was from someone who knows a lot about cancer: “You have to get closer to the science.”
The science was at UCLA, where Slamon and his team of researchers were changing the fates of millions of women. I left the private practice and became the patient of a brilliant young oncologist in Slamon’s lab, Sara Hurvitz. My former oncologist had suggested sectioning my liver. Hurvitz had no intention of doing that. She would give me six treatments of chemotherapy; halfway through I would get a scan to see if it was working. In cancer treatment, the gold medal is finding out that the tumors are shrinking. Silver—and who wouldn’t want a silver medal?—is that you are stable. There is no bronze.
The day my husband and I drove to the appointment where Hurvitz would tell us the results of the scan was an experience of anxiety and fear I can’t convey. The fear you feel when you’re waiting to hear the results of a cancer scan is different from when you’re in physical danger. You have the same adrenaline overload but you can’t go into fight-or-flight. You can’t even freeze. You have to keep putting one foot after the other: out of the parking garage, into the lobby, into the elevator. You have to have a nurse check your vitals and you have to sit on the table with the white paper.
Sara Hurvitz came in. All of my tumors were gone. Undetectable on the scan.
My husband and I nearly fainted. We went to a hotel and had cocktails—which “aren’t a good idea on chemo,” I had been repeatedly told. Those cocktails were the best idea of my life.
I finished the treatments, and every three weeks I got an infusion of Herceptin. With these interventions, I enjoyed a full remission that lasted 11 years. Do you know what it’s like for a mother of school-age children to be given an 11-year remission? And it was the direct consequence of the UCLA scientist who never gave up.
Now here I am—here we all are—with our health in the hands of Donald Trump, M.D. When the coronavirus appeared on the horizon, he did not get closer to the science. He mocked science. He said the panic around the virus and the criticism of his response were a big hoax; he said the outbreak would end with warmer weather in April; he said the virus was no more serious than the common flu; he said there would be a vaccine soon; he said the virus would suddenly disappear “like a miracle”; he said there were plenty of “beautiful” tests and anyone who wanted one could have one; he said the number of U.S. infections was going “substantially down, not up.” He said an antimalarial drug cured COVID-19 and the FDA had approved it for use by prescription. He said there were only 15 patients with COVID-19 in the U.S. and the number, “within a couple of days, is going to be down to close to zero.”
He said, “That’s a pretty good job we’ve done.”
After I made it to my boys’ sixth-grade and high-school graduations, I thought I’d have college in the bag. But I got sick again last year, when they were juniors. After the news of the bad scan, I told the doctor I’d see her in two weeks—I was on my way to Italy, to visit my son who was studying there. When you’ve had cancer long enough, you realize you can’t put off anything.
A second recurrence of metastatic cancer is always a big deal, and I will be on treatment for the rest of my life. But the HER2 armamentarium now holds enough drugs that I could live for many years. The science has stayed a step ahead of me.
When I first learned I had cancer, a friend told me that even during chemo I would still have my life, that I would still go forward, still do the things I wanted to do. I didn’t believe her. I recently looked through all of our photo albums—something I never do, because I feel so sad about what happened—and I was stunned by what I saw. I didn’t see pictures of two sad boys. I saw picture after picture of two boys with huge smiles on their faces, pictures of vacations and soccer games and art classes and all the fun to be had on the big swing set I bought at Costco when I first got sick. In Costco, it had looked a reasonable size. In our small backyard, it looked like a condo building had gone up. It looked ridiculous. And the boys loved it. Looking at all of those pictures, I realized something: This was my life’s work. I gave the boys the best childhood I possibly could.
A year ago, I sat on a couch with my phone in my hand, waiting to place a call: The Mount Vernon Grand Hotel, which is near Kenyon College, accepts reservations exactly one year before graduation, and books up in an hour. I got through and said something I’d never said before: “I’d like a suite please.” Reserving a hotel suite in central Ohio is not the grand gesture it would be in Venice, but it meant something to me. I’d made it.
Today my husband called to relinquish the suite, because the graduation ceremony is postponed. No one knows for how long. Maybe I’ll get to my sons’ college graduations, and maybe I won’t.
Stage IV cancer during a pandemic when Donald Trump is the president! Could it get any worse? No.
Listen to Caitlin Flanagan talk about this story on Social Distance, The Atlantic’s podcast about life in the pandemic:
This article appears in the June 2020 print edition with the headline “The Last Day of My Old Life.”
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