It’s called tongue cancer

On September 25th, 2015 I had a strange dream. My brother, Brad, and I were racing into a city being ravaged by a black bear. We were the only ones running towards the bear, brushing past civilians who were fleeing in terror. I woke up at the part where we were trapped in the hallway.

On September 27th, 2015 at 1:00 a.m. my brother and I were on our way to the hospital. 

As I pressed a lead foot on the gas, Brad reared back in the passenger seat. “It’s happening, isn’t it?” His words lingered in silence. The only sound resonating in the darkness was the hum of the engine. 

I didn’t say anything. I didn’t have to.

I sped down the highway, caution lights off, daring police to follow behind. 

I ran a red light. 

When we arrived at the hospital, we raced up the stairs three floors, towards death.

It was nine o’clock on Tuesday night in February 2015, when I arrived home to my family sitting in silence. My family never had family meetings, only family dinners. It was a vision of ill news if I ever saw one.

My heart stopped. I approached cautiously, finding support leaning on the couch. Mom looked at Dad, and nodded. I did not miss the quiver of Dad’s jaw. His face drained of color, he moved to sit on the edge of the recliner. 

“Kids,” Dad said.

His voice was shaken. 

“There’s not an easy way to say this.”

My mind searched for what he was going to say before he said it. I remembered summer vacation in the smokies. It was 2014. In the parking lot of a Cracker Barrel the morning before a hike, Dad had complained about the pain in his tongue and how it had hurt to eat his food. Mom was furious, mentioning the importance of doctors appointments. She had turned to me as Dad climbed into the driver’s seat of the Honda CR-V. She knew she was going to have to scare Dad into seeing a doctor if he wouldn’t go himself. 

“I have cancer.” 

I recounted conversations about Dad’s weight loss, about his health. Something about doctor visits that never occurred. That’s what Mom had meant about making Dad finally go to the doctor. 

I remember my tears after he said the word cancer. I must have said something. I know I must have mustered a sentence in between tears. A cry, perhaps, an “Oh Daddy,” followed by me running to my room. But these details are foggy. 

I remember a family hug. A confidence speech of, “We will get through this.” And I remember my guilt at my gut feeling telling me, “No, we won’t.”.

I never saw the tumor. I was too bothered by the smell of cancer to take a look.

Oh, does cancer have a smell to it. It’s an aroma near impossible to describe but one which pervades the nostrils abundantly. I’ll describe it as the presence of illness. Tongue cancer, more specifically, smells of bile combined with what I only know to describe as the cancer itself. I’ll never be able to forget it. 

The smell is so pervasive, that whenever I would catch wind of the cancer scent I immediately became concerned I was contaminated and carried it with me. It’s the sensation of standing in a hospital emergency room surrounded by undiagnosed people hacking and throwing up, fearful that your mere presence in the room will cause you to contract something. 

“You can’t catch cancer,” Mom would say. She would see me shy away from Dad’s hugs or inspecting silverware in the kitchen that had come in close proximity to a syringe used for Dad’s medicine. These were early discomforts I’ve come to be ashamed of. Cancer existed inside Dad, yes. But it was not contagious. And yet somehow, I couldn’t accept this.

Tongue cancer altered Dad’s speech. It robbed him of a normal and healthy diet—not to mention the simple pleasure of food. And as chemo failed to slow the cancer down, it moved to Dad’s esophagus, then further, eventually encompassing his lungs. Once it hits the lungs there’s nothing we can do, Dr. Sonar had told Mom.

I cannot imagine the pain or the horror of losing sixty percent of a functional muscle that produces my speech and allows me to eat—even the basic need to consume food became a  laboring task. This was the reality of Dad’s condition people failed to accept. Even a couple months into our bout with cancer, church members would insist on cooking food for Dad. A friend of mine even offered a suggestion on how to cure the nausea felt from chemo treatments: everything tastes like sulfur, but lemon helps. It had worked for her Dad. These notions were all responded to with a sigh and look of dismay on my family’s part. “He can’t eat anything,” we would tell them. Still, I don’t think they understood. 

Dad’s cancer was brutal. To come home and see your Dad using a feeding pump is difficult, but it became normal for me. I was there when the speech therapist would stop by and go through exercises with Dad, helping him re-learn how to articulate words with his surgically altered tongue. I was there when he tried and failed to learn how to swallow again. We were holding out on it, because if Dad could learn to swallow he might be able to eat soft food. Might. I watched him slurp a spoon full of tomato soup and tilt his head back in an attempt to swallow.  He was dismayed, shaking his head and avoiding eye contact with Tara, the speech therapist. 

In moments of conversation or small talk, when I would give news on Dad’s condition, I would become aware of a certain mixture of sympathy and horror in people’s eyes. It was the unsettling realization that my family had become the people that bad things happen to, “those people” who are pitied. It was no secret how dismal our circumstance was. Dad continued to receive bad news and his cancer scared everyone who heard about it. 

My mom and I both cringed under every instance of small talk, every pat on the back, every stare.

It made me uncomfortable. I never had viewed myself as an open book and I wanted to keep it that way. But hardship changes what you can be private about. Prayer lists, conversation, doctors visits. Updating people became a job. I felt invaded, as if people sought out my innermost secrets on a regular basis. Eventually it was all written on my face. Even my anxiety betrayed me. Stress was evident in my hollow eyes—eyes having adapted to the nature of crying. I had transitioned from contacts to glasses, from wearing makeup to wearing none at all. I was a raw representation of myself. I had nothing to hide. Stress and grief are funny that way.

Cancer was not supposed to happen to us.

We were not those people.

Every day, when Dad was recovering from his surgery at Vanderbilt Hospital, I would come over after work—arriving around 5:00 p.m. and driving up to the valet in the parking structure to quickly rush to the ninth floor. I would visit with Dad until the hospital locked the doors for the night and I had to go to my Aunt and Uncle’s house to shower and sleep. Mom and I would eat in the cafeteria or I would go and pick up food to bring in the room for us. We had to keep Dad in good spirits, we had to act like everything was okay. We had to make Dad believe the surgery had taken care of the cancer, because he wasn’t lucid enough to fully understand the news of stage four cancer. Dad believed he was healed. This had been the hope we all had. 

Mom’s demeanor would change when we would leave Dad’s room, her shoulders drooping and her eyes closing in exasperation and defeat. We would lean against the wall at the end of the hallway, gazing out the window. There would be silence, and then…

 “I never thought we would be those people,” Mom would say. And I would say, “I know.”

I’ll never forget the Saturday before Easter, venturing on foot to the Mellow Mushroom down the street from Vanderbilt to escape the white walls for a while. Mom, my brother, and I walked in silence. We sat down and ordered, then played with our straw wrappers while we waited. Mom broke the silence.

“I can’t believe this happened to us,” She said. “We are those people.”

I don’t know what it’s like to lose a loved one suddenly. I have no experience with the grief that comes with the shock of here today, gone tomorrow. I pray I never do. But I do know what it’s like to watch death slowly approach. I do know what it’s like to become obsessed with death—knowing that the time will soon come when death will steal your loved one away.

I don’t know which is worse. I’ve heard it said that knowing someone is going to die at least leaves you with time to say goodbye. It gives you time to spend each day as fully as you know how with the person you love. But it also means anxiety and panic attacks, as well as an obsession with time and the idea of death. You become obsessed with every minute of every hour of every day. You pray for good results at check-ups. And when test results are bad, you brace yourself. Knowing leaves you with a sense of impending doom. And the fear of death rules you.

I put my life on hold for a year so I could stay with Dad. And I don’t regret that decision.

I lived 2015 as slowly as I could. I documented every moment as best I could. I even started out making a short video documenting Dad. I had meant to be about surviving cancer. About a month in I stopped filming. I could see it made Dad uncomfortable.

Still, I was thankful for quality time. I tried to get Dad out of the house as much as possible. I tried to get his mind off of cancer, off of death. We even asked as a family if there was some place he’d really like to go. But there was nowhere he mentioned. He just wanted to be at home. I would urge him to go to the park, but the heat was too much in the midst of summer. And other activities became too difficult due to his exhaustion from chemo treatments.

Dad and I would see movies.

That was our thing.

I never wanted to leave him in the house, sitting in that green armchair alone with his thoughts. I would feel guilty for leaving to go to work. I would feel guilty for going on runs at the park. The whole time I would think of how I was wasting what little time I had left with him. I would cancel plans with friends to stay at home and make sure I was around. Dad would tell me to live my life. He told me he didn’t want people sitting in the house staring at him. He even wrote me a note that I still keep on my dresser. He said he didn’t want to hold me back. I would hug him and say, “Okay.” I would never admit to him I was scared to live.

Because I knew that, although the present sucked, the future was even worse. I couldn’t bring myself to look to the future where Dad didn’t exist. The future that is now my present.

The knowledge of death looming over us was evident every day. Somedays it even felt surreal to come home and see Dad sitting in his chair watching Bonanza. It seems strange to say so, but I would have these moments often—moments when I would be surprised to see him. I almost cried once when I came home from work and he was still awake in his chair. He had stayed up to say goodnight. This phenomenon occurred off and on. I imagine it was the result of me knowing he wouldn’t always be there. It was because I could sense death inching closer. It was as if I was mentally preparing myself for Dad’s absence. I began to count every “good-night” and every “good-morning.” I counted hugs, conversations, movies. I counted walks. I counted every moment spent with Dad. And it broke my heart.

But knowing someone is going to die doesn’t prepare you at all. 

There are days when I imagine what would happen if Dad were to make a full recovery. I envision Dad and Mom on a vacation somewhere, bantering about itineraries and arguing over the benefits of old school Google Maps print outs versus GPS. Dad will pull over at a gas station, too prideful to give up the wheel or ask for directions, but will hold the Google Map print out in front of him, reading glasses tilted on the edge of his nose. Mom will slouch in the passenger seat and ask if she can drive. They’ll both laugh about the situation after arriving at their destination hours later than expected. That’s how it was supposed to be, Mom always says. Both of them retired, traveling, living their best life. But this is just a vision. It’s not reality. 

No one ever told me seeing a man Dad’s age at a coffee shop smile at me would make me cry, or that seeing fathers and daughters in public would remind me of what I’d lost. No one ever told me grief could hit unexpectedly in a movie, where the daughter gets ready for prom and the dad smiles and says how beautiful she is. No one warned me how difficult it would become to listen to Frankie Valli and the Four Seasons, to watch fireworks on the Fourth of July, or to watch O Brother, Where Art Thou? No one told me that things attributed with memory contain their own ghosts. 

For me, grief began with the months I witnessed Dad growing weaker. In the mornings of the summer of 2015, when I woke to Dad seated in the green armchair in the living room, I also woke to acknowledge Death.

Grief was the onslaught of panic attacks, the runs at Kereiakes park surpassing five miles, the manner in which I handed out lattes in the drive-thru window at Starbucks, bitter at the happiness of those around me. Grief was the anger I felt during small talk when church members asked about Dad. It was the rage I felt at God for not healing.

The hardest part of grief for me was the realization that it isn’t just concerned with the past or present but also the future. Grief exists in the realization of time passing in a world where someone close to you no longer exists in physical form. This concept is the most difficult to live with. There are always new experiences I find myself wishing Dad could be a part of. I cried when I filmed my best friend’s wedding. Cried for the father-daughter dance I’ll never have and for a moment I’d never be able to share. When Dad was dying I often prayed to God for the world to stop, for time to pause so I could come to my senses and endure a day without hours passing, but the days kept on from sunrise to sunset.

I find photos and home videos sacred. Dad, the first filmmaker I ever knew as I like to dub him, forever situated behind the bulky video camera, his voice resonating in time and space. His voice soothes me to hear, his smile—when captured through my hand-held artistry or Mom’s or my brother’s—forces a grin on a sullen face. I will myself into these moments, Christmas 1993, Christmas 2014, and every memory in between. My life so perfectly captured in real time on VHS and Hi8 tape, it feels as though I can pause a frame and step back into it. 

I want to pull Dad out of memory, position him in the green armchair at 10:00 p.m. with a newspaper and a plate of Honey Buns. He’ll wear a gleeful smile, resting at last after a hard day’s work, and tell me to change the channel to the news. I’ll complain but pick up the remote anyway. Yes, I want to see Dad there, falling asleep halfway through the news, right before the weather. I want to hear him snoring and see Mom roll her eyes and shake his arm to wake him.

I imagine an alternate universe in which I don’t have to wish this.  

But unfortunately for me, alternate realities don’t exist. I can’t visit a realm in which Dad still sits in his green armchair in the living room. This makes the reality of death—the separation of it—all the more heartbreaking. Try as I might, I can’t reach into a photo and pull him into the present. I can’t will him back to life. 

Time is passing in a world where my dad is absent. Somehow I thought it would remain still. Because how does the world exist without Dad present? A constant that I’ve always known is forever etched into time as memory. And with each passing day I grow more anxious with the knowledge that I am living without Dad. I am capable of waking up, eating my oatmeal, and having my tea. And whether I choose to greet the day or not, it will pass. And I will remain to have withstood the twenty-four hour process that is sun up and sun down and one rotation of the earth on its axis.

I’m obsessed with memory because I’m obsessed with keeping Dad  in the present somehow. I’m scared of time passing, of years turning memories dim and leaving Dad behind.

Mom understood what I meant when I said this. But she also told me of the importance of healing. She told me I have to let go, not because I want to forget, but because I need to leave the past where it is. I need to allow Dad the happiness he is due instead of attempting to keep him mortal. “Dad can never be just a memory,” she’d said. He can’t. Because it’s impossible for a loved one, especially a parent, to fade from our lives. After all, they shaped us into who we are. And we carry their presence with us, not only in memory and in our heart, but in our very appearance. When I look in the mirror I see dark brown eyes. The eyes of my father.