Reconstruction: A Never-Ending Story

This article was adapted and updated from a 2016 Froedtert & MCW Together, We Are Strong blog post titled “Scar Tissue.”

My mastectomy scars started out as the midnight blue of my surgeon’s pen, deftly scrawling the path of his scalpel on the white canvas of my chest. After he came, drew, and left, I found myself in front of the mirror over the sink of the pre-op bathroom, staring at the roadmap he’d sketched. I was met with an array of curved and straight lines; dictating symmetry, outlining what would be kept and not kept, and measuring how long, how wide, and how far down.

After the surgery, I shuffled from my hospital bed to the bathroom mirror and shut myself in. I wadded up the faded hospital gown under my chin to uncover my new flat chest, with long, thick strips of white tape on either side, holding together the severed edges of skin underneath. I imagined those blue lines—drawn on just hours before—being traced, sliced, and splitting apart. I imagined a red river flowing up and being caught by dark green surgical towels, circular pools spreading out and soaking cotton fibers. I imagined the pulling apart of my skin, the hollowing out, and the careful, complex art of putting it back together.

On my first night home from my double mastectomy surgery, I sat in our clawfoot tub up to my waist in warm water as my husband gave me a bath. My four surgical drains were pinned to a lanyard around my neck; their thick, plastic tubing stitched to my skin and looping down to skim the surface of the suds. Since I could not raise my arms to my head, he massaged shampoo into the bed of post-chemo fuzz that was beginning to sprout from my scalp. And because I could not reach my feet, he ran a washcloth over my toes, the way I’d imagine a parent bathes a toddler. In my haze of benzodiazepines and pain medication, he helped me stand and step out of the tub—one leg at a time—kneeling in front of me to dry each foot before it touched the ground.

With time and physical therapy, I was back in the shower by myself. The surgical drains were eventually pulled, one-by-one, slithering out from underneath my skin like snakes, leaving behind small, snake-bite scars over my ribcage. And when I closed my eyes, I could find the start and stop of my mastectomy scars with my fingertips, ridges riding up, corners pulled taut and stitched, leaving small puckers of skin where my nipples used to be. I would trace and retrace these purple trenches, finding their beginnings and endings, wondering how touching numb skin could hurt so much.

And when I could finally sleep on my side again, my husband returned to the comforting ritual of curling up behind me, his arms overlapping to swallow my frame, his hands tucked into the space where my breasts used to be. I would lay awake in the dark and imagine that emptiness being reconstructed. It would be the closest to normal that I could hope for. It would be the best chance either of us would have at learning to forget.

Since my diagnosis almost a year before at the age of 29, I’d been putting one foot in front of the other. I’d been taking things one day at a time. After all, I had been working as an oncology nurse for about six years, and I knew what to expect—the implanted port, the hair loss, the fatigue, the neuropathies, and the hot flashes. I completed my treatments diligently, maybe almost even eagerly. Chemotherapy and my double mastectomy surgery had been boxes to check off on my list of tasks to finish in pursuit of that other “c” word—cure. Next, it would be breast reconstruction. And after that, on the other side of these treatments, I envisioned the promise of getting back to normal. My destination was survivorship—that magical place in the not-too-distant future where I might actually be able to stomach the sight of a pink ribbon, feel sexy in a swimsuit, and have eyebrows to pluck again.

Months later, my surgeon again drafted a plan on my skin. This time, his pen left behind a blueprint for the building of something, instead of taking something away. To me, it was the reconstruction of myself and of my life. I pictured wholeness after this surgery; I pictured beauty. I’d spent months both avoiding and seeking out mirrors; scanning each reflection for who I used to be, and never quite finding her.

With reconstruction surgery, the freshly formed scars on either side of my chest were again traced, split, and sliced open, then stitched back together. Scars within scars. The healing brought them deeper this time, and darker. Again, I found myself in front of the mirror in the post-op bathroom, under a halo of neon light. A surgical bra obstructed a clear view of my surgeon’s work, so instead I leaned in over the sink, searching for something else. The artificial spotlight amplified my pale skin and exaggerated the depth of the shadows under my eyes. I was met with the gaze of the same stranger I’d been finding since the beginning of this nightmare. Who was this person? Tears began to form as I started to realize that reconstructing my sense of self was not as simple as waking up from my last surgical sleep.

I continued experiencing a slow unraveling of self-confidence and a growing discomfort in my own skin. If you would have asked me at the time what, exactly, the problem was, I would have had a laundry list of complaints, mostly focusing on my distain for my new fake breasts. They were the wrong size and shape; they sat funny on my chest and didn’t fit into bras. They rippled in all the wrong places when I flexed my pec muscles, and it felt like I was lying on two foreign objects when I slept on my stomach—which, I guess, I was. They were numb and always cold to the touch, something my husband would tease me about when he reached for me under the covers. These new pieces of plastic stitched to my insides were frauds, I’d complain. They weren’t me.

But really, what I meant to say was that I didn’t feel like me anymore. I was the one who felt like a fraud. Because when people asked me how I was doing, I’d reflexively say “great!” even though I wasn’t great. And I watched as the lives of my cancer-free friends continued to unfold in ways that left me feeling behind. And I found myself only pretending to believe him when my husband told me I was beautiful. And how could I possibly complain about the litany of miserable menopausal side effects from my new ovarian suppression treatments, when I was literally watching friends that I’d made in the cancer world, die?

I didn’t recognize myself in the mirror, and there was a loneliness in pretending.

To reconstruct something means to rebuild it after it has been damaged or destroyed. My physical scars are the documentation of the damage my body has incurred in my endeavor to rid myself of this thing called cancer. I have collected 13 in total, and I can point to each one and recall the reason why—core needle biopsy, lumpectomy, sentinel node biopsy, port placement, four surgical drains, PICC line, two more surgical drains, and, of course, mastectomies with breast reconstruction. But I have learned that the emotional scars I’ve accumulated through this experience are harder to quantify. They are harder to count and harder to heal, especially when others aren’t aware they even exist.

Although my chest had been reconstructed, it was actually my fractured sense of self that needed to be rebuilt. Attempting to rediscover who I was on the other side of cancer became a slow, arduous process. I don’t think anyone wakes up one day to find themselves suddenly, miraculously, “Great!” Instead, for me, there has been a gradual coming-to-terms with the upheaval cancer has caused in my life and the disorientation I feel as I continue to try to make my way back to normal. There is a deliberate decision that must be made to accept, and to love, and be thankful for whoever I find in the mirror each morning. It took time for my physical scars to heal, and it will take more time for them to fade. I suppose it is the same for the uncertainty and fear that I carry with me for my future, and the sadness and grief that I’ve endured for what I’ve lost and the person I used to be. Restoring my sense of self is work that I have been doing for over nine years now, and sometimes even still, I wonder who I am becoming. It must take time to heal heart and soul, as well as skin.

It must take time.