I wake as if from a dream. The August sun streams through the heavy linen panels that flank my bedroom window. Outside, I see the familiar trees, the wooden swing set, and the landscape of our life here. Silently, I draw the covers back and rise from the bed. The air conditioner makes a gentle hum that is somewhat hypnotic. I walk with bare feet across the worn, wide planked floor to the bathroom. I splash cold water on my face, drag a brush through my hair. Everything has the look of normalcy. Toothbrushes scattered in a porcelain cup on the counter. Medicine bottles neatly line the shelf created by the wainscoting. Clothes lay haphazardly across the floor by the large tub, discarded and dirty from a warm summer night already passed. For a moment, I forget. I stand in front of the oval mirror as I pull my camisole over my head. My skin is tan. I examine my reflection, holding the soft cotton shirt in my right hand. I feel a light sense of dread rising within me. My left hand grazes the gauze bandage taped to my right breast. Each incision replaces the one before it, rough and jagged against the pale skin hidden from the sun. My girls lie sleeping down the dimly lit hallway, but I have to remind myself that I am not alone here. In my mind, I have visited this morning many times, carefully running the words through my head. The house is still and quiet. I sit in a corner of the pale blue room, my back against the linen chair. I am still shirtless, my top pressed against my bare chest. I realize that I am hugging myself, my knees drawn up to my torso so that my body forms a small ball. I have to move from here. When I imagine it, the words come easily. “I have breast cancer.” They are at once soft and crisp, soothing. I am reassuring. I will reach out and gently wake them, first my twelve year old and then my eight year old. Sleep will cling gently to their faces. I will sit Indian-style at the foot of the bed, pulling the covers up around my waist as my girls hold the other end snugly up to their small chins. I will pull them closer, brush their sun- streaked hair from their foreheads, and tuck a stray strand behind an ear. They will listen, nod in stoic comprehension. This routine is not unfamiliar to any of us. This is my story. I don’t want it to be theirs.
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Four decades ago, girls like me didn’t live. They didn’t finish school, get married, and amass debt and faded scars and broken relationships. They didn’t carry children. Pediatric cancer patients then didn’t have the privilege of battling it out for years to come. Forty years ago, the tumors that stretched from my left shoulder through my chest would have killed me. In the time since I was diagnosed with Hodgkin’s Disease, I have, at times blithely, and at other times, awestruck by my apparent luck, collected all the trappings of a normal adult life. The thing about time, though, is that it’s never enough. Life always leaves me wanting more.
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Once upon a time, most of us thought a cancer diagnosis was a certain death sentence or a prologue of sorts. If, however, you had the good fortune to make your way through the ring of fire, you would emerge victorious, cured, a survivor. But, as medicine has improved and the number of survivors of pediatric malignancies increases, data has emerged that reveals new and myriad challenges in cancer survivorship and troublesome late effects of early cancer treatment. “We really don’t know the ultimate magnitude of late effects and the impact that they are going to have as this patient group ages over time,” posits Les Robison, PhD, chair of the St. Jude Children’s Research Hospital department of epidemiology and cancer control. “We don’t know what’s going to happen in the fourth, fifth and sixth decades as this population ages.” And so, as children, we thought we were empowered and invincible, wholly unaware that we had entered a maze, a labyrinth of land mines, at once terrifying and a privilege. . My sleep had been broken, anxious, but still, I was startled by the sound of the alarm. My youngest daughter lays next to me, her right leg carelessly stretched across my torso. Gently, I wriggle free from underneath her weight to shower and finish packing my things. I pause momentarily at the edge of the bed, tempted to press the “dismiss’ button on my phone and find a way to dodge the day. But I don’t have options. Purposefully, I move through my morning routine, blocking out sentimental thoughts that could derail me. I step under the hot rain of the showerhead, feeling the water run down my shoulders to form a shallow pool on the tile floor. I open the sterile surgical soap that stands in the corner of our shower and rub it roughly over my chest, once and then twice. I blow my hair dry and head for the closet. I settle on a white and brown tunic and white jeans. I clip my bra, slip the shirt over my head and slide my feet into bright orange platform wedges. I examine my image in the long closet mirror, just a few feet from my sleeping girl. I look as though I am headed to lunch at a club, no concessions to my situation. My youngest daughter is eight. It’s now nearly seven a.m. and still she is in a deep sleep, curled up in the corner of my bed where I left her. Her hair is spread out on the pillow and her hands are loosely clasped by her small mouth. I am reluctant to wake her and set the day in motion. I hesitate momentarily and then reach out to stir her. She is the easy one, I think. She looks up at me, and smiles. Her needs trump my illness and she asks for a tray of pizza bagels and a bottle of water. Waking my twelve year old will be worse. I resist my desire to linger, take in tender details. Cautiously, I enter her room. She hates the illness and the careless imprint it leaves on her life. It is Friday and she will start the 6th grade on the following Wednesday. The year begins with a two-day class trip to northern Connecticut, a “Nature’s Classroom.” My surgery has thrown a wrench in her excitement. She wavers over whether to go, but we decide she will. I’ll be a phone call away. Unlike her sister, when I rouse her, she looks up and registers the day. Her brow is furrowed and resentment permeates her movement. She pulls navy terry cloth shorts over her tanned legs and quietly mutters, loud enough for me to register, “Here we go again.”
