Harriet Alida Lye’s most recent book is Let It Destroy You.
Harriet Alida Lye wearing the suit she sewed during recovery.Courtesy Harriet Alida Lye
When I was 17 and had my first real boyfriend, not counting the middle school in-name-only boyfriends I was too afraid to talk to, I sat in the passenger seat of my mother’s white Chrysler sedan and asked her if I could get a boob job.
“No,” she said, which is what I had expected.
“Then can I go on birth control?” I asked, because I heard that the pills can sometimes make your boobs a little bigger. This had been my plan all along. Birth control, and also, hopefully, slightly bigger boobs.
“All right, fine,” she said, probably seeing right through my intentions.
Fast forward many years. My mother’s sister had breast cancer, her cousin had breast cancer, and then, so did my mother. All had various types of treatments depending on the stage; all survived. I told my doctor about my family history, and she recommended I get genetic testing.
I found myself in a situation played out in Greek tragedies and Shakespeare plays: Is it better to know your fate, or not? If you do know your future, would you act to change it? I didn’t have to get genetic testing. Many in my situation do not. But I’d had an extremely aggressive and rare form of leukemia at 15. If there was anything I could do to avoid once again having to surrender completely any control over my life, I would do it.
The results came right before Christmas, while I was nursing my four-month-old daughter and trying to simultaneously play with my three-year-old son. The genetic counsellor wrote to me to say she wanted to find a time to speak on the phone with me – soon.
I know all about phone calls. My mouth went cold and my heart quickened. Please just tell me over e-mail, I wrote back. I have a baby, I have a toddler, I can’t predict my availability and I just want to process this on my own time. It seems I was saying: I know what you’re going to tell me, but please. Look at this life I have. Please don’t take this all away from me.
Early one morning, early in the New Year, our daughter was sleeping in the bassinet at the side of the bed. The sun was up but the house was quiet. I was crying. I hadn’t talked much about the results yet, but knew I needed to voice my fears to get them outside of my head. I told my partner, Cal, that it felt like every day I woke up there was a 55 per cent chance that I would get breast cancer that day. He did this face that he always does before explaining something, where he knows the correct answer but doesn’t want to be condescending.
“I understand how you might feel that way,” he said, so calm, “but that’s not how statistics work. The odds get spread across years and divided by days into something much, much smaller than 55 per cent a day.”
“That’s better,” I said. “But still. Not nothing.”
“I have a better analogy,” he said. “We all have a 100 per cent chance of dying in our lifetimes, right? But there’s not a 100 per cent chance of dying every single day.”
That one landed, and I felt able to let something go.
My gene is called PALB2. It’s not as famous as BRCA, but it carries a similar significance in terms of risk. PALB2 was only discovered in 2006, and its connection to breast cancer wasn’t established until 2014. As a result of this delay, the PALB2 gene seems less common, but as gene sequencing becomes more advanced, and more data points accumulate over time, the patterns of hereditary cancers become easier to see.
High-risk breast cancer screening programs are not offered by every province, but Ontario, where I live, has one. For people in the group I now belonged to, we meet with an oncologist every six months who does a physical exam, as well as an annual MRI and mammogram. Those dates are misleading, though. Every time I had a scan, there were follow-ups: a “darkness” required an ultrasound as soon as possible, a “density” called for a repeat MRI for clarification. The medical language isn’t quite that metaphorical, but almost – the doctors’ explanations always seemed shadowy, ominous.
“Don’t be too worried about getting these follow-ups,” my doctor said. “For the first few scans, they’re just getting your particular topography.”
That word, topography, stayed with me. As if the landscape of the body could be accurately mapped.
In our first meeting, my oncologist asked if I was considering a prophylactic double mastectomy, and I said what I knew to be true: I would get the surgery, but I wasn’t ready yet.
“Do you have a date in mind?” she asked.
I thought about the ages of my kids, their child-care situation, and the amount of time I felt comfortable waiting. “Probably in three years,” I said, fairly off the cuff.
She wrote that in my chart.
I was constantly assured by my medical team that this was my decision to make: nobody would push me in any one direction. There was no “right choice.” Many people in a higher risk category than me live long, cancer-free lives. Others get cancer, but it’s identified early because of the high-risk screening, improving their prognosis. But I didn’t want to leave it to fate, so I picked a random date that seemed far in the future, which felt like the biggest gamble I’ve ever taken. It’s a huge surgery, and I didn’t want to do it before it felt necessary, but I also didn’t want to wait until it was too late. The leukemia I’d had as a teenager had been so quick to develop and rip through my body that if I had waited a matter of days before going into the hospital with my symptoms, before my diagnosis, I might have died in the interim. While breast cancer is not the same, I saw this new situation through the cloud of my past.
A few months later, my oncologist set up a meeting with one of the plastic surgeons so that I could ask more questions and get a sense of things as I considered my options. It feels so much easier to make lots of small decisions rather than one big decision. Thinking back, I almost feel like I didn’t even decide to get the surgery – I decided to meet with the surgeon, and this one thing led to another thing, and another. This meeting was the first step.
The plastic surgeon explained to me that in a prophylactic bilateral mastectomy with reconstruction, which is what I would be getting, there are two surgeons who do separate jobs, back to back: the first takes away the breasts, and the second, which was his role, puts in new ones. I say “new ones,” but they aren’t really breasts, of course. He placed them in my hands for me to hold. They’re beanbag sized sacs full of clear Jell-O. They’re flat-bottomed snow-globes with the texture of a gummy bear.
This surgeon looked a little bit like the actor who played Frasier Crane’s father. Same side-part in his white hair, same kind smile. He asked me what I did for a living and when I told him I’m a writer, he sighed this pleasant little sigh and leaned back.
He told me that before he was a surgeon, he went to art school to study sculpture. (This seems like great advice for artists: become surgeons. It also seems like great advice for doctors: study art.) He returned to OCAD every year to give a lecture to the graduate students about how what he learned at the school informed his practice. How the body is a sculpture you did not make, and it moves – you have to work with that movement to make sure that what you do to a body fits with its natural motion. It made me think of humility – to be a silent artist in service of the body – and it made me think of craft – to have to do a perfect job because this is someone’s life.
Over a year after that meeting, after I had already booked the surgery date, I met with a social worker as part of my hospital care team. “I’ve already booked it,” I told her, “but I don’t feel committed. I just wanted to book it, but I can cancel it.”
“I see,” the social worker said. “And if you were going to cancel it, why would you do that?”
I burst into tears. I could barely speak.
“Because I’m scared,” I said. “I’m scared of surgery, I’m scared of the aftermath of it, I’m scared of a new body, a body that isn’t my own.” I realized that I would never not be afraid. Why would I stop being scared? What would have to happen? Fear was a perfectly normal reaction to the situation.
Dahlias that were blooming in Harriet Alida Lye's garden the week after her surgery.Courtesy Harriet Alida Lye
For a long time I felt bitter about carrying this gene – so bitter! – and I always felt I should apologize for that. (Why? To whom?) But I think bitterness might be inevitable when so many people tell you that you should be grateful to be able to make these choices pro-actively, and you are grateful, kind of, but gratitude is complicated: you are also mad, and sad, and scared. Because of my experience, I have a healthy fear of cancer. I am reverent of its powers. I have lived with the ways that it can change the course of a life and this time, I chose to do what Oedipus and Macbeth could not: I would change my fate.
Several friends asked how they could help. One set up a meal train for the six weeks postsurgery, and so quickly, people signed up to make my family dinners and sent gift cards for takeout. New friends, old friends, people I do online yoga with every morning, neighbours, a writer I had met only once at a book club. So many kindnesses! A woman in Rhode Island I’d interviewed for an article a year earlier sent me two of her unused post-surgical bras in the mail. My mother-in-law’s best friend e-transferred me right away. I couldn’t believe it. Are all people this fundamentally good?!
All of these promised gifts made me almost look forward to the surgery, because I now could look forward to the aftermath. But it also made me feel like I could no longer cancel it. I had to go through with it in order to receive the lasagna, the smoothies, the chicken pot pies!
The night before my surgery, I – for the first time, if you can believe it – googled my procedure. I prefer to put stock in individualized conversations with professionals, but now looking at the first page of results I was suddenly panicking. Why had I not googled this before?! I clicked on a medical paper, fearful of what I would find, but then I read that of the patients in the study who had had the procedure I would be having at eight o’clock the following morning, all of them reported a dramatic, if not complete, drop in cancer-related anxiety.
I put down my phone. If that happens to me, I thought, this will be worth it.
The next morning, two years and 11-and-a-half months after learning about my gene, I let one surgeon take away my breasts, and then the sculptor-surgeon gave me a pair of flat-bottomed snow-globes. I thought I wanted to buy them at 17, but I got them for free, at 37. In the end, I chose for them to be as close in size to my own as possible – they weighed them in the operating room and chose the closest match. These new ones aren’t mine, but they belong to me.
The surgery went according to plan. I came home to soup and bread and flowers, cookies and books and gifts on my porch every day, for the intense six-week recovery. Every day at dinner time, instead of complicated feelings about the surgery, I felt a completely uncomplicated, overwhelming gratitude for my community.
Several weeks out, the pathology report came back. The first surgeon, the one who removed my breasts, told me on a Zoom call that the right side came back with something that “isn’t cancer, and it isn’t precancer, but it’s an indication that cancer was likely on the way.”
And now I can say that this, too, is something for which I feel uncomplicated gratitude: A dramatic, if not complete, drop in cancer-related anxiety. To be in the world, playing with my little kids, living my little life, with the knowledge that I rewrote my fate.