Not How It’s Supposed to Be

“This isn’t how it’s supposed to be,” my father said, staring blankly at the wall in front of him.

We were sitting in the hospital cafeteria. The wall he was staring at was covered in the kind of durable textured vinyl wallpaper meant to be scrubbed of food or bodily splatters as needed – the multicolored pastel pattern somewhat camouflaging any detritus left after a halfhearted attempt at cleaning.

Those were the only words he spoke. I knew what he meant. This wasn’t how it was supposed to be. It was Christmas Eve of 2013 and we were eating chicken wraps that may have passed for an acceptable lunch, but were cold and stale by the time we plucked them from the refrigerator case. I wasn’t hungry anyway.

I can always tell when my father is about to cry. His round face seems to get fuller, his eyes become bloodshot, and his lower lids fill with an impressive amount of liquid before finally brimming over.

I watched his eyes as I forced the dry tortilla wrap down my throat with water. He wasn’t about to cry. He seemed numb. He was exhausted.

The ‘C Word’
This was the second time my mother had been admitted to the hospital since being diagnosed with cancer on her fifty-eighth birthday. This particular hospital stay was because she was vomiting blood – a sign she may be bleeding internally. The oncologist and gastroenterologist were both stumped as to the cause. My sister theorized that perhaps the treatment was working so well that the large tumor in my mother’s stomach was disintegrating. She provided this theory to one of the doctors, who humored her with, “Hmmm, well, I suppose that is a possibility, but it probably isn’t likely.”

In the weeks following my mom’s diagnosis, we had learned the standard boilerplate responses to all the questions we would be asked again and again.

What type of cancer is it? Stomach.

What stage is it? Late.

Can they do surgery to remove it? No.

Has it metastasized? Yes.

Upon hearing the prognosis, the inquirer would inevitably launch into a story about someone they knew, a grandfather, a neighbor, a friend’s aunt’s ex-husband’s CPA… The stories always began with a dire diagnosis and ended with a miraculous recovery – parables to illustrate you don’t have to believe what the doctor says because doctors don’t know everything.

I would smile politely and nod my head as though I believed them.

At first, my mother’s diagnosis felt unreal. Cancer happened to other people’s parents. My grandfather had died of cancer before I was born. I had never watched anyone close to me go through the daily misery of waking up exhausted, then spending the entire day fighting a relentless onslaught of pain, fatigue, vomit and diarrhea.

When I learned my mother had cancer, I was angry it had happened to her. My mom is the kind of person who starts projects, but doesn’t always finish them. My mom is averse to strict schedules and prefers to meander. She spends an inordinate amount of time caring for others, and not enough for herself.

I worried about my mom’s commitment to what I knew was going to be a tremendous battle. She wasn’t a competitive person. What if she gave up? This wasn’t how it was supposed to be. If this horrible thing had to happen, it should have happened to my dad instead. He could fight this. He could beat this.

My dad is the most resilient person I know. All fathers have that inherent “dad strength” – the kind of power that comes from deep inside a father’s soul, enabling him to lift impossibly heavy objects, drive all through the night on family vacations, and drink twice as many beers as you on your twenty-first birthday. My dad isn’t tall, but he is dense and muscular. I have him to thank for my broad shoulders and stout legs. I also have him to blame for my tendency to deal with confrontation with two extremes: I either refuse to back away from my position, or I shut down completely to suppress my emotions.

In my family, we have come to realize that I’m basically my dad, and my sister is more like my mom.

Emily is two and a half years younger than me. As toddlers, we looked so similar, people thought we were twins. My mother did little to discourage that presumption when she dressed us in coordinating outfits and cut our hair in the same “bowl” style for years.

Emily and I could not have been more different as we grew up. She was described as boney, whereas I was just big-boned. She was a free-spirit, gleefully defying my parents’ orders and reveling in her punishment. I, on the other hand, was wound so tightly the mere thought of a lecture from my parents put a knot in my stomach. She delighted in emulating her older sister. I resented her attempts to copy me. Despite being so different, my sister is central to all of my best life experiences. I continue to learn from her compassion and admire her sense of adventure. I used to think of her as someone who needed me to guide her, but now I can learn so much from her wisdom and life experiences. As siblings go, I couldn’t be luckier.

My sister has a very different relationship with my mother because they are so alike. They are more expressive with their emotions, whereas my father and I internalize them. When my mom told me about the cancer, she told me I needed to take care of my dad because this was going to be so hard on him. When my dad and I talked, he told me to take care of my sister because this was going to be so hard on her. When I delivered the cancer news to my husband, he said one word: Fuck. (A perfectly succinct way to sum up what we all felt.)

I didn’t fully grasp what my mother’s cancer meant to my sister until several weeks post-diagnosis. Emily told me she felt as though she was losing the parent she was closest to and related to the best – her parent.

I wish I had come up with something wise and comforting to say to Emily. I wish I could have disagreed with her. It was bad enough to lose our mom. But for my sister, this was like losing a part of herself.

This wasn’t how it was supposed to be. The burden should have been mine, not hers. I was the stronger one. I could overcome this pain. But I worried it would be too much for Emily to handle.

Christmas Eve Chicken Wraps
My father and I finished our Christmas Eve chicken wraps in the nearly abandoned cafeteria. As we made our way to the elevators, we noticed a sign in front of the gift shop advertising all Christmas items at half price. We perused the superfluous merchandise – coffee mugs printed with “Ho Ho Ho,” ceramic nativity figurines, plush penguins wearing scarves, and so on. It was all useless crap.

I settled on a felt Santa holding a gold star. Santa’s awkward orientation made it unclear whether he was meant to be displayed with his feet down, as though he was holding the star up above him, or hung from his feet so that it appeared as though he was being pulled by the star as it shot through the sky. I liked that Santa was such a mess, he didn’t know which way was up. I bought it.

When we returned to my mom’s room, she was watching the small television mounted to the side of her bed. I hung the Santa decoration from one of the hooks on her IV stand. My father sat down and resumed working on a Christmas letter he had started writing to his friends and clients.

My mother had discovered a channel that played Christmas carols while a crackling fire displayed onscreen. She listened to the carols while drifting in and out of sleep. My father clicked away at his laptop. I stared at the orange and golden flames in high definition retina display. The scene was The Night Before Christmas, set in an alternate reality.

Later, my father and I walked through the parking garage. We trudged through the long, winding puddles formed when snow from outside melted off the bumpers of parked cars in the slightly warmer environment.

“You know, I was thinking about my when my dad died and what I could tell you,” my dad said. “I don’t have any advice for you for dealing with this. The only thing that will help is time. The more time passes, and the further we get from this, the less it will hurt.”

He gave me a hug – not the kind of quick, mandatory goodbye embrace – a hug so tight I could feel his lungs waver as he suppressed what were sure to become sobs on the drive home alone in his station wagon.

The next day was Christmas. As usual, the entire family on my mom’s side was coming for dinner, gifts and games. Despite the hospital stay, my parents were steadfast in the notion that we could not have Christmas somewhere else. My sister and I, with the help of our doting husbands, prepared to host the Christmas party ourselves so my father could stay at the hospital with my mom. Emily and I set the tables for Christmas dinner, forks on the left, knives on the right.

My mom was weak, but she was determined to go home. Hours went by with no indication of whether she would be released or not. Finally, after numerous tests, the doctor determined that she was no longer bleeding internally, although he had no indication of what caused it to occur in the first place. (My sister maintained her theory.) My mother was discharged at three o’clock. The Christmas party started at four.

With my mother’s immune system compromised and unable to fight infections, the nurses instructed us to keep her away from anyone who was sick, ensure the use of hand sanitizer by anyone who came near her, and for my mother to wear a surgical mask as a barrier against germs. We followed the orders explicitly, turning my sister’s old bedroom into a “visiting area” where my mother could sit and relatives could take turns coming up to see her. We put a large bottle of Purell by the door. I brought a sampling of Christmas dinner to her – only a bite of each dish so she wouldn’t be sick.

Later, she came downstairs to witness the display of unfettered indulgence and utter chaos that is the annual gift exchange. At one point, she removed her scarf to show one of the younger kids her bald head for a moment.

“WHAT?!” he responded in shock before we all burst out laughing.

Later, the cousins, aunts and uncles all gathered in the dining room for whipped cream shots. Whipped cream shots are a holiday tradition started years ago, when my dad was serving pie and a young nephew came up and asked to be served whipped cream only, no pie. Emboldened by his Christmas beverage of Bailey’s on the rocks, my dad replied, “Ok, tilt your head back,” and before long, all of the cousins were running to fun Uncle Bill to enjoy the same amusing, plate-free dessert. We ran out of whipped cream for the pies. As the tradition grew, we got smart and started buying several cans specifically for the purpose. The event evolved last year into the First Annual Pie Face Tournament. The last family member who doesn’t get a whipped cream pie to the face, wins. There’s even a trophy, hand-crafted by my dad, of course.

On that stressful Christmas, my husband, Adam, brought a cooler of beer and made sure my father had plenty of them throughout the evening. By the time we left, I wasn’t sure which of my parents would wake up sick.

My mom insisted it was the best Christmas she ever had. When she said “best” I knew she meant “last.” No one said it, but we were all relieved she made it to Christmas.

The Treatment Plan
My mother was fortunate to get into a clinical trial at Siteman for a new drug combination. Every other week, my father would take her to spend a day receiving chemotherapy. She would continue receiving chemo via an intravenous pump in her jugular throughout the rest of the week. The treatment plan for my mother was described by her oncologist as “buying time.” There is no cure for gastric cancer. But, if my mother responded positively to treatment, there was a chance she could live longer than if she had no treatment.

After a couple of months, she was given a PET scan to see if there was any change to the large mass in her stomach and smaller tumors in her spleen and liver. The day she was to receive her results, I stayed home from work, knowing I might react with tears and not wanting my coworkers to see me.

I held my breath when my phone rang and the name Mom appeared on the caller ID.

“Hello.”

“Hey, it’s Mom,” she said in a subdued voice. “Can you hear me okay?”

“Yes.” I clutched the phone tightly to my ear.

“I’m at the doctor’s office and we have the results of the scan.”

Why was she speaking so slowly? Just get it over with already, I thought.

“Ok, and?”

“According to the scan, the main tumor has shrunk by sixty percent, and the other tumors have also shrunk by …”

I didn’t hear the rest.

Sixty percent.

Sixty. Percent.

SIXTY PERCENT!

I stood up and paced the room wildly.

“Oh my God! That’s amazing! Wait, this is amazing, right?”

“Yes. It is,” she responded measuredly.

“WHY AREN’T YOU SCREAMING RIGHT NOW?!”

“Well, I have to keep my voice down because there are other people around. We’re in the waiting room.”

Here was my mom, delivering some of the best news of her life, and she was trying to be polite so as not to disturb those around her.

She went on to tell me the reduction in the tumor was a very positive sign and that she had definitely bought more time.

This wasn’t how it was supposed to be!

My mother was supposed to have given up. She was supposed to have died. She didn’t.

A New Normal
In the two and a half years since then, my mother has continued to battle through treatment. Just this week, she was hospitalized, and surprised us all by recuperating enough to go home earlier than we were told she would. I am in awe of her. She is tougher than I ever gave her credit for. She is stronger than I ever knew. She is a badass.

That’s not to say any of this has been easy. That’s not to say beating cancer is a matter of willpower or badassery. Cancer is a miserable, fucking wretched disease. It is one of the few diseases where the treatment can actually be worse than the illness itself.

My mother will be in some form of treatment for the rest of her life, essentially making this her new normal routine. We’ve been told this type of cancer isn’t curable, and she’ll never be in remission. The cancer may eventually get to a point where it doesn’t respond to treatment. This is supposedly what will happen.

But, I no longer believe in the way things are supposed to be.

4 comments

  1. Well, you managed to make this crusty middle-aged man cry, so congrats on that. And thanks for sharing this beautiful, heartfelt, raw tribute to your mom, your family and what’s truly important in life. Well done.

  2. Annie, thanks for writing this. Beautifully done. I’m on a similar journey with my mom and there’s no way around it: it sucks. Lots of ups and downs but it sure makes us appreciate just how strong some people are and what love really looks like. Hope your mom continues to rally and that you have many happy memories ahead with her.

  3. Annie, I enjoy your writings, and am sad that you had to write about cancer and it changing your perspective. Hang on to each other and squeeze real tight. You’ve got a wonderful family.

  4. Annie, you may have a tendency to keep things inside, but I’m grateful you have a gift for writing them down. You said SO much! Love you!

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