Undies

I gathered fallen leaves and spread them on the porch. I positioned a green spotlight on the dogwood in the front yard. I chalked an outline of a dead Frankenstein on my driveway. I played The Undertaker’s theme song on repeat, the bells tolling, signaling the annual night of ghosts and ghouls.

Halloween was one of my favorite holidays. I loved the cold, the darkness, the tricks, the pranks, the festive atmosphere and neighborly spirit, and above all, the candy. Many of my friends gave up trick-or-treating in high school in favor of parties, but I didn’t. Like many traditions, especially those revolving around fond holidays, I couldn’t let go no matter my age.

One year I trick-or-treated in two neighborhoods with two different groups of people, steadfast in my wish for a long, continuous sugar high. Unlike my brother, JD, who devoured his candy (he once ate 50 Starburst in 8 minutes), I was a saver. I ate my final Snickers well into the winter. My candy would’ve lasted until the summer if JD hadn’t stolen some. I should’ve made him eat the Almond Joys for punishment.

At sixteen I wouldn’t let cancer ruin my fun. I got released from the hospital on Halloween morning. I went to Best Buy in the afternoon to buy Outkast’s newly released Stankonia, where the employees were dressed in ‘70s costumes. I ate McDonald’s Chicken McNuggets afterward for my first solid food in two days.

My lack of energy and inability to transport adequate oxygen throughout my body didn’t stop me from trick-or-treating. My friend, Robo-Lax, joined me. I wore my Undertaker mask like I did the previous three years. Robo-Lax and I traded candy afterwards. I gave him the Almond Joys for free.

The three Halloweens prior to cancer I couldn’t wait to take off my Undertaker mask because I got so hot. Looking like the Sick Kid made me wish I had a mask. On that Halloween night with Robo-Lax, behind Undertaker, I felt like myself for a brief few hours.

I went trick-or-treating at nineteen, and again at twenty-three purely on a joke/dare/“Are we seriously doing this?” basis. Facing embarrassment, that’s how I justified it.

Age has taken away the excitement of Halloween, something I once vowed to never let happen. I have passed the torch to a younger generation of kids. It is their holiday, their candy, their chance to be The Undertaker.

Someday the excitement will return and I'll answer the door in my Undertaker mask with his signature phrase, "Rest in peace!" My desire to accumulate loads of candy will be replaced with a desire to scare the shit out of children.

Happy Halloween.

So Far Away (Part III of III)

So Far Away (Part I of III)
So Far Away (Part II of III)

The hospital I left behind was the same one that successfully treated me for my first cancer, and without hesitation, took me in when I got home from Minnesota. The hospital was directly associated with my cancer, one of the most important events of my life, making it an equally important location to me, both materially and ideally. It consumed my time, and not just hours or days, but months. And not just a dot on the life span of the universe, or on one of the life spans of one of the universes, but the aging of my self. The hospital brought me closer to life in the form of cancer freedom and closer to death by taking a portion, whatever it may be, of my aggregate heartbeats. The hospital was like a living organism, not a friend or enemy, but a life-form containing elements of each.

The hospital’s friendly employees welcomed me, whereas its dreadful food turned me away. So many cancer people spent their time at the hospital. They were Sick unlike me even though we shared the same kind of illness and appearance. The hospital made them that way, or at least that’s how it seemed. The hallways and elevators escorted us from one inhuman place to another with the ultimate intention of freeing us from disease, all the while mercilessly punishing us. The machines beeped and buzzed in a foreign language I grew to understand. The rooms, structures, and some of the staff lacked human traits like empathy and transposed them onto some of us cancer people. That helped me feel like Superman, or be Superman, or which is it again?

The hospital helped make me that way by fostering an atmosphere where that feeling could grow, which created a code that I lived by, like “the Code of Harry” in one of my favorite shows, Dexter.

Survive
Don’t cry
Don’t complain
Don’t show pain
Don’t question your ability to survive
Don’t question your superiority
Think of cancer as normal
Don’t let cancer make you sad or jealous

Few other places or entities were as critical to my growth as that hospital. My faith in the code, like Dexter and his, was shaken, which was the reason I permitted myself to leave the hospital. I was so fucked-up that I had to question some of the rules.

I didn’t leave on bad terms. Some of the people there are special to me. Favorable or not, I will always remember the hospital as vividly as anything else. Of course, Arrogance I can do without.

Leaving the hospital didn’t make me well because it wasn’t the hospital that made me fucked-up. The weirdness didn’t stop. While lying on the couch I got an acute pain in my abdomen, in the area of my liver. The pain spread to my back, pulsing. If nothing else it gave me good reason to take my favorite medicine, oxycodone.

The pain wasn’t coming from my liver, but rather my gallbladder. It was full of stones and sludge. The pain occurred about 12 hours after eating food high in fat. If I ate a Cinnabon I’d probably die. Cinnabon can kill a healthy person in less than a day.

My doctor from the new cancer clinic, Dr. P, remembers well the first day we met. I looked so terrible that she insisted I lie down while my parents and I spoke to her for about an hour. “We should’ve taken a picture of you to compare,” Dr. P says whenever I see her nowadays. “You looked like a different person.” Now, I’m somewhere between a prepubescent girl and Andre Carter.

When every organ seemed to be deteriorating, and every muscle atrophying, and my life generally slipping away, I got well. It wasn’t oxycodone or valium, or an experimental treatment, or an invasive procedure, but the simple steroid, prednisone, that gave me my life force back.

I wasn’t supposed to get into that much trouble. Sixteen-year-old Ben would’ve gotten well after his transplant months before nineteen-year-old Ben did. It would seem that Superman was dead and gone, leaving simple Ben, capeless. That thought was as sad as my physical appearance.

I didn’t use the term “Superman” as a joke, nor did I use it to brag or describe my strengths. It was my strengths that led me to believe I was Superman because there was no other term worthy. I used it to describe what was extraordinary about me, the superhuman Ben, or maybe the inhuman Ben. Unlike my cancer-ridden left ilium, Superman was the one thing I had that couldn’t be taken away.

Like the Code I continue to uphold, my faith in Superman remained. My invisible cape is still tied around my neck. Until I die, no matter how it seems I should feel about Superman, it will be a part of me, if nothing other than a remnant, like a single cancer cell that can’t be killed, waiting for its time to flourish again.

So Far Away (Part II of III)

So Far Away (Part I of III)

I was superior to others at handling my first cancer. I looked down on them, either thinking they were inferior humans or I was superhuman. For self-serving reasons I normally chose the latter. Now for the first time, five months after my transplant, 16-year-old Ben could look down on 19-year-old Ben with contempt. I was fucking pathetic, barely able to eat and even drink, which is why I was continuously hooked up to IV hydration.

It was difficult to look in the mirror after taking a shower. The people I most looked up to were professional athletes, often with large, well-defined muscles, like 6-4, 250-pound Redskins defensive end Andre Carter who supposedly has 4% body fat. I looked more like a prepubescent girl.

Weird shit was happening to me almost worthy of being in Fringe. My salivary glands stopped working. I was a slow eater before, but now I broke records. I had to chew each bite until the food was mush in order to swallow. Even then I had to gulp water, as if I was taking a pill. I tried dry-mouth gum, mouthwash, and spray, but none of it helped. I should’ve gargled with triamcinolone.

I went to my hospital’s dental clinic to determine the cause. The dentist didn’t perform a single diagnostic test, but observationally concluded I had oral damage due to chemotherapy that “may go away.” I expected to receive a lip biopsy. My doctor later told me I didn’t get one because I “refused for fear of too much pain.” Hey Doc: How about I saw off your left hip, poison your body with chemo and radiation, make you vomit over 100 times, give you 13 bone marrow biopsies, and then see if you’re too much of a pussy to handle a cut lip, you motherfucking liar. He must’ve misheard me.

If I swallowed food or a pill incorrectly, I puked. I knew I fucked up as soon as it went down and rushed to grab one of the buckets distributed throughout my house. I was too weak and the nausea came on too fast to reach the toilet.

I had the joy of receiving a brain MRI, a procedure where you lie motionless with your head secured, trapped in a loud, tight cylinder for 45 minutes. So you don’t lose your mind, there’s a tiny mirror that allows you to see outside the cylinder. If it had been an fMRI, then the radiologist would’ve seen significant left-brained activity in the form of “get me the fucking shit out of here!”

I developed the shingles for the second time in my life. At least this time the rash wasn’t down south. I saved the body cavity searches for later.

My brain turned to “mush” as Arrogance called it. Concentrating on mental tasks was difficult for me. I’m just glad the one online class I was taking was from community college and not from my alma mater, the University of Virginia. I had a difficult enough time at UVA with a working brain.

My eyes watered all day long, pooling in the bottom of my eyelids until overflowing, first saturating my unnaturally long eyelashes until finally streaming down my cheeks. You’d think I was weeping uncontrollably like Jason Segel from Forgetting Sarah Marshall. As a non-crier I felt the need to prove the salty discharge was not on my accord, like I was guilty until proven innocent.

I saw an ophthalmologist at the hospital’s eye clinic. After JD and I waited three hours to see him, the doctor said I had pink eye, a copout answer. It also turned out to be untrue. Days later, Arrogance called me and said I needed to come back and see the ophthalmologist again. Instead I chose to see a local ophthalmologist, who gave the same bullshit answer, but saved over four hours of my and JD’s time.

Arrogance lectured me on how big a mistake it was, that my health was not something to screw around with. Well, I was tired of screwing around with her and her colleagues, and left that hospital for a closer cancer clinic.

So Far Away (Part III of III)

So Far Away (Part I of III)

I was frigid, shaking, and terrified. The five or six blankets I was under, a couple straight out of the hospital’s blanket incubator, weren’t effective. I wished I had my own giant hen to sit on me. Or I could set myself on fire.

When my body’s temperature increased, I felt the opposite. I was no longer operating at 98.6 degrees. I felt chilled at 100, cold at 101, freezing at 102, and at 103 there was no adjective in the English dictionary worthy.

Every ten minutes I called the doctor in. “Are these blankets going to increase my temperature faster? What happens if it gets higher? Will I have to take a cold bath? Can I go into a seizure?”

My skin was fucked-up — irritated, inflamed, dry, red, flaky — you name it and I had it. I was supposed to slather myself with triamcinolone ointment, a topical steroid. Using the ointment would trap my skin’s heat and make me feel warmer. But in order to use it I had to get out of bed and away from the minimal warmth I’d already collected. I was in the arctic and could either dive into the frozen river to reach the bear hide, or stay by the fire and hope that would be enough. It was one of the most difficult short-term decisions of my life.

Among other things, I had a staph infection in my central line that caused my temperature to rise five degrees in just as many hours. It was not my healthiest year. I had just come home from four months in Minneapolis, halfway across the country, where I received a stem cell transplant. Minneapolis was one hell of a difficult journey. I thought being home meant I was on the path to wellness. Somehow I was worse off than I was before.

At 103.3 my temperature started declining. I did use the triamcinolone. I thought my bones would shiver themselves shattered before I reached the bathroom. The infection went away with the help of vancomycin, a powerful, broad-spectrum, “last resort” antibiotic I’ve received countless times over the years.

Nobody knew what was wrong with my skin, the largest and most underrated organ. Just about every square inch was fucked-up in some way. I went to the dermatology clinic and stripped naked so doctors, nurses, and even medical students could look me over. That wasn’t unusual for me. In Minnesota I had no less than 10 different people see my junk. What was weird was having me face the wall, spread my legs and bend down. I was in a different kind of prison, but the body cavity search remained.

While waiting for blood results at the hospital one day, my brother, JD, went down to the basement cafeteria and brought back a pulled chicken sandwich, coleslaw and potato salad. My temporary nurse practitioner, Arrogance, said, “I bet that’s 800 calories if you finish it all.” I ate maybe an eighth of it before feeling full.

Arrogance always found a way to dampen my spirits. If my meal is 800 calories then I just consumed 100. How can I continue to survive while eating so little? Without the help of Boost and chocolate milk, my daily caloric intake would’ve been under 500.

JD drove me to many of my doctor appointments. That morning on the radio we heard So Far Away by Staind. I’m not good at understanding song meanings, but to me the title said it all. I couldn’t have been further away from my goal, with the exception of being dead. According to my health trend, I was on my way there.

I was so far away from my beautiful university that Thomas Jefferson founded, and from the college life I was supposed to be living. I was so far away from my friends, who were accelerating past me not just in credit hours but also in social experiences, maturity, and new friends earned, the tangible college credits. During my battle with my first cancer there were so many positives, but now I was so far away from even them.

So Far Away (Part II of III)

The Sound of the Shofar shall set you Free

I called over our very attractive waitress. I shouldn’t have, but I couldn’t help myself. My roommates T-Unit, Mr. Mountain Dew, and I were at Chili’s during happy hour for — what else? — the free chicken wings. Mr. Mountain Dew liked spicy food, but his body rejected it like mine rejected etoposide. He was sweating like it was the desert.

I couldn’t let him get away with it. “What can I do for you?” our waitress asked.

“I have a question for you…look at my friend here. Do you see the sweat beads dripping down his face? Have you ever seen that before?”

She stared at Mr. Mountain Dew eating his chicken wing, blushing equally as much as he was sweating. “No, I’ve never seen that.”

Mr. Mountain Dew had interesting eating habits. He wasn’t passionate about food like I am. He rarely put effort into what he was eating. If he got hungry he didn’t want to wait to eat, even if we were supposed to go out for dinner (unless our dinner would be free, such as at Chili’s). This, I couldn’t understand. “Mr. Mountain Dew, I went an entire month without eating anything except grapes and Ritz crackers. I think you can wait an hour.”

That line works every time.

Wednesday night begins the 24-hour Yom Kippur fast. When I was younger the fast seemed impossible, but now it’s easy, almost too easy. Not eating for a month gave me a unique appreciation for food and the ability to eat. As much as I don’t want to take that for granted, I do. Yom Kippur renews that appreciation, at least a little bit.

For the break-fast Thursday evening, I should take Mr. Mountain Dew to Buffalo Wing Factory for Flatliners. I hope he doesn’t drown.