After Treatment: What Is Lost, and What Comes Next

When my plastic surgeon’s physician assistant called me for the first time, she said, “Put my number in your contacts, right now. You can text me anytime, about anything.”

I did what I was told. You do a lot of that when you have cancer. It was late spring, and I was still reeling from my diagnosis — invasive lobular carcinoma in my right breast. I was also just coming to grips with my treatment choice: a bilateral mastectomy with DIEP flap reconstruction.

My surgery wouldn’t take place until halfway through the summer though, giving me plenty of time to think of questions to text to my new contact.

At first I had none. Then, as the weeks went by, concerns — and anxiety — began burbling up with enough force to send me straight to my phone. Who can I talk to about what it’s really like to have this surgery? Will I keep my nipples? Is that stupid to ask? What do I buy to wear during recovery? What will I feel like?

All the straightforward questions were quickly dispatched: “Here’s a former patient’s phone number. Yes, you keep your nipples, and no it’s not a stupid question. Here’s a link to a robe a lot of women like.” Then the texts stopped, and my phone rang. After hours. I could hear a toddler in the background.

“Denise, listen,” she said. “I’ve talked to so many women we’ve operated on and here’s how I think you’ll feel. When it’s done, you’ll just be so grateful it’s over. It’s later that you’ll feel the loss.”

As I write, it’s two months after my surgery, and I’m four days into a 16-day radiation regimen. During the treatments, I lie on a table while the machine rotates around me. When it’s directly above me, I can see the reflection of my torso in its glass face. Loss, indeed.

With leaf-shaped bits of transplanted abdominal skin causing divots in each reconstructed breast (those are in place only temporarily), and the “dog ears” (aptly named) protruding from either end of my abdominal scar, I quip that I look like Frankenstein’s monster’s mother.

These oddities will be fixed later. After I recover from radiation, I’ll undergo revision surgery — a sort of plastic surgery tune-up. Then I’ll meet the body I’ll live with going forward. For now, though, I am still prone to peeking backward, wondering, What the heck happened to me?

There is loss. I lost what my upper body used to look like, which is the most obvious. When I’m looking in that glass hovering above me every morning at radiation, when I peel off the camisoles I now wear in place of bras, I’m startled, still, by the difference, which may objectively be better (it’s all but free from cancer, for one thing), but it’s still loss.

You stare at your body every day, for years and years. It changes over time, but then it changes all at once.

I experienced a similar sensation — time doing its slow, inevitable work and then change happening in a blink — as my sons left for college a few weeks ago. For all those years they grew and grew, the pencil marks on the kitchen wall now many inches higher than my own head. Then, all of a sudden, there were duffel bags and plastic crates and faux succulent plants and rainbow-striped shower slides in a pile by the front door, then in the back of the SUV, and then gone. Twice in one week.

Loss is all around me. This year, thanks to record levels of drought in the Northeast, the leaves are barely bothering to turn brilliant colors — I got a preview in upstate New York when we dropped off son number one. They are going straight to brown and dropping off. A loss.

I’d text my physician assistant and ask her what she thinks about the drought, or about empty nests (a strange question for her; the last time I saw her in person she was bursting at the seams with her second child), or empty bras (all my old underwires, in the trash), but I doubt she’d have a ready answer for me this time. She might say that the loss is part of the journey. I can see that, even as I resist the “journey” tropes that are so ubiquitous in breast cancer talk.

But in truth, loss is not a stop on a journey; it’s a continuum. My task now is not to figure out how to confront loss as an obstacle, but rather to live my way through it, because it’s ongoing and permanent. I haven’t lost my sons, of course, but I have lost the day-to-day immediacy of mothering them (not to mention the body parts with which I initially mothered them).

Something irretrievable has been left behind, and what’s ahead still feels murky. This is what I’m thinking about as I look at myself in the mirror — and at my sons’ almost painfully orderly bedrooms. The view is going to change, in both cases. I just have to stay on the ride, on the road, to find out where I’m going next.

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