Shine A Light On Me

Life was different now. Things were complicated. I ran errands each day. There was always something unplanned. My dad struggled with eating, which along with malnutrition would spur desperate cravings that became more errands. The errands didn’t bother me though the social aspect was difficult. I felt actual physical pain in the entire situation we were in. Not exactly the best circumstance for smiling over exchanges of goods and services with strangers. There were other reasons getting groceries became a problem.

My wrist and elbow inflammation hadn’t healed and became worse the more I used them. At barely five feet tall, the task was taking its toll on my weak frame. Getting tons of heavy groceries off the shelf, putting them into the cart, taking them out at checkout. Then back in the cart, then into the car, then finally out again to be carried inside the house. It all became completely horrendous by the second week. That’s six times of lifting, in case you didn’t count.

My dad needed bottled water and I could barely lift the twenty-four package off the shelf at the store, let alone that many fucking times. Of course, not a single soul cared to ever help. There were moments I had the capacity to break down crying in public on the floor in the aisle, not because I needed help, but because I didn’t want help. It was frustrating not to be able to do it all myself. It was another thing I never asked for. but what my dad was going through was an infinitely worse version. Any time I felt frustrated I would then feel guilty by comparing myself to what he was living.

During Christmas break, I got introduced to the new way of life for my parents. To put it straight forward, my dad was always in a bad mood. He wasn’t sitting there in a knitted cap, with a stupid quilt across his lap talking gently of fond things and telling us special messages to carry on forever within our hearts. My dad was angry, his bones constantly hurt. Along with whatever torment he felt internally, of which I can only speculate because he never shared. Pain I only know exists from stories heard from by other people who had pancreatic cancer. 

His stomach had been rapidly failing for a year. His medications and chemo had worsened the situation causing bowel movements of polarizing extremes that made his entire existence more miserable. In November he had to have surgery for a hemorrhoid that was making his life impossible partly due to all the side effects. You know, things people don’t talk about because they aren’t nice. Things you don’t know what to respond to with. Things you hide. 

He was terminally ill. Nothing helped, absolutely nothing. Of course, when an outsider comes into this situation, they believe they have a new and unforeseen suggestion. They don’t mean to be annoying but it is and I definitely took part in this act unknowingly. I wanted my dad to eat healthy things, but he simply wouldn’t. He rebuffed a plate of quinoa and scowled at the mention of yogurt. Because of his malnutrition and hunger, he craved bad things, things that worsen cancer cells. He wanted sugar, fried food, rich and heavy foods. But even those things would not taste good for more than a few bites. 

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One day during December, when I first arrived, he was shoving handfuls of pecans into his mouth. Me, being a new, outsider jackass with good intention, I had to interject my knowledge, “Nuts are some of the hardest foods to digest.” and in my dad’s most merciful tone he could muster, in what I’m sure was a moment of incredible strength said, “There’s nothing I can eat. I’ve tried everything, it doesn’t matter.” I rapidly began to feel like total shit. 

It wasn’t until being home a few weeks later that I finally understood what my dad was living. His situation was not simple and not going to be answered with quinoa, tofu or fucking yogurt. It was the end times. Whatever he could eat, he did. How the hell could anyone tell him no? He was literal bones. All the superfoods in the world couldn’t stop what was coming.

My dad was always a stubborn person. In this state, things got ridiculous. He said the fridge water and ice smelled and tasted bad. We had to stock up on bottled water and then of course his food had to be a certain way. My mom was juggling his list of demands and becoming completely worn down, especially with procedures for his soup. 

The soup he ate had to be piping hot, he said it was because it was easier on his stomach to eat that way, (I don’t know.) Again, how do we argue? He insisted that the cheap chicken bits be removed. The soup was to be boiled and brought directly from the pan without cooling, in a mug with a dish towel to buffer the heat. Sitting in his chair in the living room, he held the tiny mug and it looked like he was in a race to eat it. Never did it occur to me, during that time, that he was clearly forcing himself to eat. 

On a good day he’d have two tiny mugs of soup, and two or three crackers. On a bad day, one mug and one cracker. Sometimes throughout the day, he would ask for a small number of gluten-free pretzels to eat. We’d tried cutting down on gluten in hopes his stomach would do better. Almond crackers were another snack he seemed to enjoy. In the evening I would make us all herbal tea. He’d drink it piping hot and take his dose of pain pills. Sometimes, after having the pills he would seem relaxed and as close to content as I ever saw him reach during that nightmare. 

It was extremely difficult to see him be himself for a few moments. Once in a while, during the day, he’d talk like normal. We’d talk about movies, politics, or space. He’d be having a good time chatting and then without fail, after forty minutes, he crumpled. It was like a switch being flipped, he shut down. Maybe it was pain, or exhaustion combined, but he would be gone again. For a brief moment, we’d be normal. Then it was over.

Sometimes he’d fall asleep and I would stare at him to make sure he was still breathing. I hoped that he would go in his sleep, something I never felt guilt for. It seemed like the only positive thing we could get, the best possible scenario. I didn’t want to imagine what getting worse was or what the end would be. Each day was a war, trying to keep up with things as they were and as they constantly changed on us.

Oftentimes I would find myself at the grocery store looking for something like cantaloupes, staring into nothing. It was like being in an alternate dimension. At home was death, insanity, torture, and pain, but in this other world, everything was still okay. I was a time traveler, transported to a place where things were still normal.

For an hour I could escape and shut down, looking at aisles of crap, fully aware of the pointlessness. Ultimately, I would feel massive guilt at the escapism. I also felt significantly wounded but a wound no one else could see. When a cashier would smile or ask how I was doing I wanted to sob, to grab them and say, “my dad’s dying, I need help, he needs help, please help us…” 

but instead, I would smile and nod. 

The trips to the clinic were a different torment. My mom had the process down, she had a bag with extra boxers, wet wipes, paper towels, and other things in case he were to have an accident from the chemo side effects. He wore his plain navy baseball cap, his winter coat that now dwarfed him, khaki pants, and a general discontentment that would drive every living soul away. I can only imagine what he was feeling in those moments. Anger, sadness, fear and maybe embarrassment of the world looking at you in a body you don’t even recognize anymore. A body that abandoned you too soon. 

He barely spoke, or made eye contact with anyone, fixating on walls, lights, and tv’s high on the walls meant to distract. I sat in anxiety trying to manage the situation by thinking of how much they had to do this alone before I’d been there. Tons of people coming and going, all experiencing terrible things. People of all ages, races, and genders, it didn’t matter. The monster doesn’t care who you are, how strong you are, your age, or what you do for a living. We all waited for our name to be called.

One day my mom pointed out an older couple like themselves that were there. The husband was getting chemo. My mom said that they had burned through all of their savings because of the cancer treatment. They had lost their money just for him to stay alive. This was American healthcare. I thought of Jon’s colitis medication that cost seven hundred dollars, which of course we never bought and hoped for the best.

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My dad’s new cancer doctor seemed slightly jaded but tried to hide it. I think my dad hated him for obvious reasons. It was a shitty circumstance and the man couldn’t save everyone. Before I came home, my dad had been through a lot. He had a horrific experience at the hospital months before. In an already weakened state, the doctors wouldn’t let him eat because of some stupid tests. He flew into a rage after literally begging them to let him eat. His treatments, medications, and tests were all expensive forms of torture. There was hemorrhoid surgery that happened as a result of all the things being done to him, the jaded hospital people, and our own family doctor who callously suggested he should be happy about his sudden weight loss. Not to mention, the torrent of bills pouring out of the mailbox. 

On more than one occasion my dad was drinking disgusting crap that would give him diarrhea, all for some more stupid tests. So my dad didn’t trust doctors much now, he didn’t want to deal with them. He reluctantly attempted to be cordial in a world of health care that was a scam to him in his final, excruciating days of life. He realized too late that the empty promise of treatment might help some, but it wouldn’t for him and stage 4 cancer.

After chatting with the doctor about his cancer cells and other concerns, we’d then go to the actual treatment room. It was a wide room with about four short aisles, recliners on each side and about thirty chairs. There were a couple of chairs for “loved ones” to sit near patients. We brought my dad magazines like his lifelong subscription of National Geographic and some pretzels that he never wanted. He always slept, reclined, his baseball cap over his face. It wasn’t until long after that I realized how much of a performance he was putting on for me, for us, how much he must have hated it. 

Through his white t-shirt, I could see his port under his skin, just below his collar bone. A giant box pushing through his skin. It looked terrifying. It made heat crawl out around my ears and neck when I would look at it. I couldn’t imagine what it felt like and I didn’t dare ask. My dad’s demeanor suggested he rather not be reminded of its existence. Another hurtful thing that etched away at his physical autonomy. One of many, my dad was forced to accept. He’d nap for about an hour and a half while the poison did its work. 

Those first few weeks together, December into January, we coasted on hope. My dad swore he felt a little better, that the treatment was working. In the end, it was a placebo effect, my being there as a perfect distraction for a while. It was a relief that I was there to help, that we could catch up after having been apart for so long. We’d never had much time together like this before. My whole life, his job kept him from being home much. Now there was nothing to divide us. I felt I had to make the most of every minute we had left.