Copy

My older brother JD burst through the front door at 11 p.m. carrying three cardboard boxes, the exterior shells to heaven on my tongue. He said the large one held a 14-inch Domino’s Hawaiian pizza, and the elongated ones held cheesy bread and hot wings.

Perfect timing. I’d tired of watching fireflies and playing Donkey Kong 64 on this summer night in 2000, between my sophomore and junior years of high school. I’d even felt ready for bed, but stayed up extra minute after extra minute in hopes my delivery-driver brother would make my wish come true.

Late-night pizza was as much my fantasy as alone time with Britney Spears. Or perhaps the pizza held a higher ranking because I knew how to eat pizza but didn’t know how to converse with girls.

JD hadn’t paid for this dream to come true. He said this food was from the collection of pizzas and sides not fit for customers, and thus free for him and other employees. That food had burned in the oven or their pineapple bits weren’t spaced perfectly or they were manhandled being put into the boxes. That’s what he said. I knew the truth, though. This glory now sitting on our wobbly kitchen table in Manassas, Virginia, stemmed from a clause in his employment contract that read, “You may mishandle food at a frequency greater than never yet less than often and then deliver it to your younger brother.”

I ran upstairs and dug in, eating cheesy bread first, then pizza, then more pizza, and then finally grabbing a hot wing.

We hadn’t grown up with spicy food. I’d even laughed at those at the seder table who chose to eat horseradish instead of lettuce as their bitter herb. But, now was my chance to be courageous. I’d become a man three years earlier when I got bar mitzvahed. I’d even been driving for half a year.

It was time to add spice in my life.

I brought the saucy, meaty leg to my lips, and bit. Flames erupted inside my mouth, but I refused to spit it out. I chewed and swallowed, feeling the flame flickering along my esophagus.

I did it. I ate the whole hot wing, and then finished several more doused in ranch dressing. I felt like my life was beginning to heat up.

*

My friends later dubbed those three months the Summer of Benjy, I think because the version of me then, the one whose courage flared, was the one they wanted to remember. I ate plenty of hot wings during the Summer of Benjy. Also in June, I tried my first beer, a Heinken. In July, for the first time I reached 100 miles per hour while driving in a 50-miles-per-hour zone. At the end of summer break, I tried purchasing my first cigars.

My friends nominated me to make that transaction at Props General Store. “Me? Why me?” I said. Didn’t they remember my bar mitzvah? My voice cracked every verse I read from the Torah. If I tried purchasing cigars, my voice would crack, the salesman would know I was underage, and I’d go to jail.

“Benjy, you look the oldest,” one friend said. “You’re the only one with any facial hair.”

He was referring to the four hairs growing on my chin and the seven at each sideburn. There was no escape.

The bells on the glass front door jingled as I entered the store. Immediately, I smelled Props’ musty odor. A couple patrons around the counter and the clerk looked in my direction, but I just continued on the path without acknowledging them.

I needed to compose myself before attempting to transact, so I walked towards the candy section. If I moved with intent, people would be less likely to question me. Five quick steps and I was past the home and car stuff and in front of my favorite nutrient. 

I grabbed the Mambas like I would during any other visit to Props. The familiarity felt good. I thought about eating the delicious raspberry and strawberry chews, and maybe sharing the lesser lemon and orange ones. 

The pulsing in my neck slowed. Before I could back out, I turned left and headed directly to the counter. Nobody stood in line ahead of me.

“What can I do for you?” the clerk said. He was looking at me. With only three hairs on his chin, I thought he was younger than I was.

“I’ll take these Mambas.” I made my voice deeper and willed it not to crack. “And two packs of Black & Mild. Original flavor.”

He didn’t hesitate. “Sure thing,” he said and then turned around to grab the thin brown packages. The kid behind the counter didn’t card me, however I knew he knew. He was just a boy in awe of my manhood. I knew that because all timid boys revered the courageous ones. I knew that because before The Summer of Benjy, I was him. 

“Thank you,” I said after he handed me change for my twenty. Before leaving, I nodded at him as if to say, “You’ll get your shot one day, kid.”

That summer, I got my shots at acting courageously and took them. Doing so felt hot, jacked up my heart rate, burned my insides and made me sweat, but also made me grow. And then my opportunities to grow in that way, the type of growth some adolescent boys need to later feel fulfilled as men, flatlined.

Mere days after summer break ended, doctors found the malignant tumor growing in my left iliac crest. It was Ewing’s sarcoma, a rare bone cancer. The year-long treatment for that caused myelodysplastic syndrome, a cancer of the bone marrow, which I was diagnosed with over a year after finishing radiotherapy for Ewing’s and whose treatment included an umbilical cord stem cell transplant. A year later, in the summer of 2004, starting to feel like myself again, I looked back at what I’d lost during those four years of cancer treatments and their aftermath. My friends and most everyone else had grown. My friends gained knowledge in history, marketing, and engineering, and experience attracting, coupling with, and being vulnerable around women. Some of my friends grew closer to each other; all of them gained new friends and access to networks of ever more friends. I saw the accumulation of their opportunities to be courageous and how they grew from having undertaken them. They were 20 years old, young men, while I felt stuck at age 16 in the Summer of Benjy and with a new handicap more consequential than the one for which the Virginia Department of Motor Vehicles issued me a blue disabled parking placard.

Sometimes, thinking of those four years of lost opportunities and wondering whether I’d ever grow in that way made me sad. Once I recognized that emotion, I felt even sadder because I prided myself on being the type of person incapable of experiencing depression. As if I had such control over my being that I’d extracted that state of mind the way my surgeon resected my tumor and adjacent margins of healthy tissue, just in case.

I tried tricking my brain to transform my mood. I wanted happiness, calm, or even rage instead of sadness, but nothing I tried worked. Then one balmy June night, I thought of a new deception to try: to eat Domino’s hot wings. That burn, I thought, even if just for one dinner, would bring me back to the courage-filled track my life traveled along during the Summer of Benjy. I thought it would trigger the elation I’d felt the night I ate my first hot wing, the way listening to Oasis’s “Wonderwall” would forever take me back to age 10, in JD’s bedroom, him teaching me how to strum the opening verses, and the feeling of idolization.

I picked up the food myself since JD no longer worked there. He’d finally moved out of our parents’ house half a year earlier, after I commanded him to. “I’m getting better. I’ll be fine,” I’d said.

White, red, and blue pervaded the walls, and the smell of hot butter oxygenated the air. I thought, maybe Domino’s—like me—hadn’t changed much in the last four years. Well, one change may have been that its profit margin slightly increased from having less mishandled food. There was one less employee with a younger brother to deliver to.

I took the wings back to my parents’ home, where I stayed in between my semesters at the University of Virginia. The two-story brick house, too, hadn’t changed much besides JD having moved out and my parents having installed some new ceramic tiles underneath the new, smaller kitchen table.

The container of ranch dressing sat open and ready next to my plate of hot wings. The napkins were stacked. My Pepsi can was bubbling. My palate was ready to burn.

I bit, chewed, and swallowed. The heat lit me up from the tip of my tongue to my tingling scalp down to my sweaty toes. It inflamed the mucous membrane in my mouth and left me coating my tongue in ranch, only because I didn’t have access to lidocaine. But more importantly, I instantly felt a connection to my past, and happiness, as intense as I’d felt the night I ate my first hot wing, flooded me.

The next day, after my neurotransmitters returned to their status quo, I congratulated myself for having found a solution to sadness. And, I accepted that maybe I hadn’t killed that end of my emotional spectrum. Maybe I would feel left behind again. In which case, the cure called Domino’s hot wings would await me.

---

You can read Benjamin's memoirs on his four years following The Summer of Benjy here

Click Here to Buy Zeal Cares Lip Balm

The days after my double mastectomy and reconstruction, I felt fine. I laughed it off and said, “oh, it’s a boob job. I’ll be perky forever now.” I kept that attitude and went about my business.  

The days after chemo, I felt nervous. I knew my hair was going to be gone soon enough. I had just started dreadlocks a few months before and I hated to see all my work go away. I detangled my locs so I could see my loose hair one last time before I went bald. 

The days after radiation, I was intrigued by the burns. Slightly grossed out, but amazed by the body’s workings. In the back of my mind, I was hoping the radiation wouldn’t mess up the great reconstruction I had months before. 

The days after my active treatments ended, I prepared to return to work. Work where you walk around a classroom among teenagers and guide future generations through Shakespeare and my favorite, Toni Morrison. Previously having big hair, it was different for us all to see me return and not look like I once had. My kids loved me anyway. 

The year after my diagnosis, I moved to New York to start grad school. I wondered how I would explain to my new friends that my old photos look different than now for a reason. It wasn’t as big of a deal as I thought. What a relief for me.

Two years after my diagnosis, I lost 10lbs. Running a summer camp for K-5 in the concrete jungle can really whip you into shape. I had a lot of free time as I was wrapping up my studies, so I exercised and enjoyed life quite a bit more. 

The months after my 2 year mark, I started to lock my hair again. It felt great to start fresh and see how much my hair had grown. My eyebrows still weren’t hitting on anything, but my hair was starting to flourish. 

Three years and some change after my diagnosis - June 2019 - I left NYC and moved to LA. I have some dreams to fulfil. 

August 2019 - I detangled my dreadlocks. Why? Because I wasn’t feeling like myself. I realized I had lost a lot of my confidence in certain ways since my diagnosis. I am reclaiming it now. 

The day I detangled my locks to see my big afro: “Oh there you are, Christina. So lovely to see you again, old girl.” 

Since that day, I look in the mirror and see myself. I make an effort to put on makeup and enjoy dressing up. It’s only been a few weeks of this routine, but after 3 years of not seeing myself, I’m so glad to be reunited. 

I see myself. For some, it may be instant. For others like me, it may take time, but you’ll see yourself. 

Note by Anonymous
Commentary by Matt Barry

 

This poem hung prominently on the second floor of Rainbow Babies Children’s Hospital during my thirty-three-day stint when I was first diagnosed. It was something that I saw daily as well as anyone who visited me. It served as a cornerstone to my entire forty-month treatment process and gave me hope. We are not given hope, this is something we must pursue, find, and hold on to.  Hope is something that is needed for life in general, and the entire treatment process to see it out through completion. This poem reassured me as well as everyone else that this is not my end. It instilled confidence in myself as well as all who supported me. This was an individual journey, however. It is important to realize and highlight that the process has a drastic effect on the people by your side. I would not go through the ordeal again, but the amount of good I have experienced  in the people around me, I would not change that for the world.  

Click here to subscribe to Calling Out Cancer
Click here to Submit Your Material to "Calling Out Cancer"
E-mail admin@teencanceramerica.org to submit materials. 
Please send submissions by November 1, 2019 to be eligible
for publishing in the next newsletter. 
The next issue will be published November 20, 2019. 


Share this issue with others by forwarding via e-mail or by coping and pasting this link:
 https://us10.campaign-archive.com/?e=83eed6de3e&u=92cff621396d2fa41f51344f4&id=e21c775681
Copyright © 2018 Teen Cancer America, All rights reserved.
You are receiving this email because you have shown your support of Teen Cancer America in the past.

Our mailing address is:
Teen Cancer America
11835 Olympic Blvd. #265 E
Los Angeles, CA 90064
Add us to your address book

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.