Jackpot: How A Rare Form Of Lung Cancer Changed Everything For Me And My Family

Four years ago I coughed up blood.

I saw an ear, nose and throat specialist and an oncologist in Corpus Christi, Texas, who suggested that perhaps I avoid tortilla chips, as I’d probably just cut my trachea eating. No big deal. A year later I got knocked up in a flurry of Hurricane Harvey tragedy excitement, which was pretty great, until I developed a cough so violent I vomited constantly and could hardly eat, drink or gain weight.

The same ENT told me that there was nothing he could do after all, this was “what we sign up for when we become parents” and I’d probably be fine once I had the baby.

I wasn’t.

I never stopped coughing. All day, all night. Fast forward nine months and I developed a pneumonia I couldn’t shake while my son struggled with the knock-on effects of what turned out to be a misdiagnosed lung cancer. I must have missed the cancer sign-up sheet.

Last May, a plucky pulmonologist diagnosed me with neuroendocrine cancer of the lung a rare disease that he insisted was the jackpot of malignant lung cancers.

“It’s hardly cancer!” he told me. “It grows so slow, it’s Cancer Lite. Definitely the lung cancer you want to get. Definitely.”

Was it really? I wondered, squirming in my 1990s nausea-patterned chair. Wasn’t not getting cancer the jackpot you wanted to hit? No matter. The doctor went on.

“This is nothing. You cut out the lung. Bam, you’re back to your regular life.”

I couldn’t quite integrate this knowledge with the facts of my regular life: I had a 10-month-old son, a 5-year-old daughter. I was 36, a nonsmoker, an obnoxious consumer of organic green peppers who religiously held her breath when driving past the local oil refineries three miles from our home. “What are you doing, Mama?” my daughter had asked years ago with fear and disgust. “Saving the life of your unborn half-fish, half-fetus brother!” I gasped after we careened past Refinery Row.

But now, there it was, a tumor the size of a small city wedged smugly in my left bronchus. Mein Klein Corpus Christi.

After my diagnosis came the referral to MD Anderson Cancer Center in Houston, a steady drip of doctors’ appointments, blood and breathing tests. Then surgery, then recovery. For me, these three years were 8% of my life. For my daughter they were 60% of her life. For my son, 100%.

Between my diagnosis and my lung surgery, I had one month to recover from pneumonia, prepare myself, and prepare my children. I thought I’d have years to give my children all my stories, all my experiences. Suddenly I had 720 hours there was no time for the comprehensive Western canon, or the compendium of my personal misadventures. Instead, I recorded myself reading “Matilda” and “Pippi Longstocking.” I played “99 Luftballoons” on repeat while my daughter and I danced in the kitchen, again and again and again. I filmed myself singing my son to sleep in our ugly brown armchair  to market, to market to buy a fat pig  smiling at him snuggled in his carrier while we walked up and down the street and he laughed at the wind on his cheeks  home again, home again, jiggity jig. All this would remain if I did not.

My husband said I needed to get stronger, so I started running again. Down the street from my house, past the big Baptist church and over Ocean Drive. It hurt. I’d cough, my tumor pressing too hard into my bronchus, and my lungs would spasm. I’d keep going. At the top of the hill leading down to the hotels, I’d see myself scooping up my son in one arm and my daughter in the other. I would look out over our few skyscrapers and feel myself sprinting over their rooftops, my children warm and safe in my arms as we left this city, this sickness behind us. I will save you. I will carry you as far as I can go, and then a little farther.

On the morning of my lung surgery I was at my parents’ sprawling one-story house in the suburbs of Houston. It was 5 a.m. I’d slept maybe two hours. The house was dark and seemed uninhabited, framed somehow. The blue and brown tile floors, the beige walls: here was a house where people lived, and now I was leaving it to go, well, elsewhere. My body would be on a table at MD Anderson, my lungs in the hands of my surgeon, but my mind, my soul that had, up until this point, been solely the province of my husband and my children where was that going? I felt tentative, apart, as if wires had been stuck through my arms and legs. I didn’t know whether this was fear or something different, something prior or adjacent to life.

I gently opened my sister’s door to kiss her goodbye. My daughter was snoring next to her, her body small under the pea green cover, her bangs crooked and perfect in a way I couldn’t focus on if I was going to be able to leave her. She looked so unprotected, so alone. Was she hot or cold? Did she need another cover, or should I take this one off?

I kissed my sister’s sweaty forehead and she stirred to hug me. I kept looking at my daughter. Her body, not mine; her body, not mine. She would stay here. I would go away. The wires in my arms started to sting and I walked out of the room. I hadn’t kissed my daughter. I hadn’t touched her I couldn’t.

My son slept in the guest room next to my sister’s. The door was shut. I paused in the dark hallway, scrunched my toes on the faded maroon rug. Again my arms ached, and again I walked away.

When they wheeled me off to surgery the last thing I said to my husband was to kiss the kids for me, every day, please. People started pushing me away from my husband, away from my children. “Please,” I whispered, “I didn’t kiss them goodbye.”

If I didn’t make it out of surgery, who could ever love my children as I had? The world that I had found so strange, so beautiful — who would guide them through it? Who would hold their hands?

I don’t remember waking up, but I do remember a figure next to me gently laughing and patting my hand, “She’s fine. She’s on her way here.” My daughter — I was asking if my daughter was OK. My logic was frantic, groping, inverted: if my daughter was OK, then I must be alive. I must have survived.

Things got grim after surgery. Breathing, walking, sleeping it all hurt, like knives in my lungs, like a rusted birdcage in my chest, like a hunter inside me I could not escape. For two months I couldn’t lift more than 10 pounds; I couldn’t hold my son. I became completely separate from my children. Were they fed? Clothed? Loved? I didn’t know; I didn’t consider these things.

My daughter wouldn’t sleep, she put gum in her cousin’s hair, emptied out all the toothpaste. My son stopped eating. He would cry and he would whimper but he wouldn’t eat. At one point I stumbled out of my bedroom into the kitchen where my mom was holding my son, trying anything to get him to take one bite of food. I walked over and put the spoon of watery baby oatmeal in his mouth. He ate it, then another, then another. I fumed at my mother for doing it wrong. Couldn’t any of these people just feed a baby? Couldn’t they do it just like me?

My son twisted his torso toward me, reached out his arms. I can’t take you, I can’t hold you. I closed my eyes and walked back into my bedroom.

My body had been their home, and now even I could hardly live there.

Two weeks after my surgery, a tender-hearted friend dropped my son. I was sitting nearby and managed to catch him just before his head hit the floor. I sobbed so hard after that I was sure my chest tube wound would split. It didn’t.

As long as I was sick, my children couldn’t be healthy it was that simple. My son learned not to reach for me, my daughter learned how to make her own toast these things, these small things, were my kids getting ready for a world without me? That little girl snoring under the pea green comforter, could I go back to her? Cut all this out, fold the olive ribbon of time back together and go home to the little girl who had been good, the little girl who had been mine?

I found a video on my phone from a month after my surgery. My daughter and I are at the beach, and it’s an ugly beach grimy sand, murky water, oil rigs dotting the distant sandbars. My daughter is skipping around the camera, around me. She’s wearing a bright blue shirt with a picture of a cherry red schoolhouse, and her hair is braided. Two little French plaits tightly wound at the top of her head and then frizzing out marvelously below. The waves crash around her small bare feet. A crane stands still on a cement wall just past us. My daughter darts a few feet ahead and shouts, “Wind and seashells ... today!” She jumps briefly into the waves, then out, then cocks her head to a horizon I’m not looking at and smiles. Just barely. A smile only a mother would see.

She was going to be OK. I was going to be her mother again. In fits and starts and slowly now, I could come back to her as I came back to my own life.

Two months later I could hold my son again. He learned to turn back my way when he was hungry or tired or scared. He would crawl and then walk toward me, his mother.

Precedent tells me I’m now supposed to say we found joy. We found meaning. We found a sublime sort of redemption in the ugliness and pain of it all. But that isn’t at all what happened, or what continues to happen. We just made it, that’s all. We plodded through time, or time plodded through us. One day followed another, soon those days stacked up to weeks, and those weeks to months.

Now my son runs, now my daughter poorly attempts to do basic math that is staggeringly boring. Life. It goes on whether or not I rejoice, whether or not I can rediscover the facile pleasure of complaining without sensing the distant heavy thud of a scythe or whatever it is death now wields (Reopening orders? A ventilator?).

It’s been a year since my surgery. While there are treatments for neuroendocrine cancer, there’s still no cure for it. Should the cancer cells that spread to my lymphovascular system decide to organize elsewhere, I’ll undergo another surgery, shedding bits of myself like little unwanted Horcruxes. For now, the doctors watch my lungs, and I reassemble the pick-up sticks of my life.

When I came back from Houston after my last CT scan in January, I took my kids to the mall, my daughter’s favorite place. I used to find trips to the mall synonymous with existential dread, and they certainly still are, but this time, somewhere between the Sbarro pizza and the bathrooms, the dread was mixed with a bewildering ecstasy.

I picked my son up out of his stroller and held my daughter’s hand. I squeezed them both. None of us made a sound as we stood together amid the ebb and flow of the pizza line that we, a small band of survivors, could watch from a new distance, a further orbit. We had brushed an edge, an unholy terror, and now we were somehow apart from the people all around us who didn’t know how lucky we were just to touch each other.

I wanted to say all this to my son and daughter, to tell them that I am still your mother, and even though we carry this cancer with us, and even though I know you’re scarred where no one else can see, I’m still yours. I’m still here. I have carried you over the rooftops, I have folded up the ribbon of time, and now we are back together.

But I didn’t say anything. I picked my daughter up, balancing her on the hip opposite my son. A bird squeaked above us. “Buh, buh,” my son babbled. “Bird!” my daughter shouted. “Bird!” We all tilted our heads upward and watched as a sparrow flitted across the steel beams of the Sbarro. I squeezed them both, held their small bodies close to mine.

“Yes, that’s a bird,” I said. I closed my eyes and breathed in as deeply as I could.

The grassy smell of my children’s hair, the doughy warmth of their arms and legs, the stench of cheese, a bird chirping in the mall rafters: jackpot. On the far shore of sickness, home.

Sarah McClung is a writer recovering from cancer while raising her two small children. She is a Ph.D. candidate in Creative Writing at the University of Houston and was a Fulbright grantee to Spain. Her work has previously appeared in The Guardian and The Rumpus.

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