Sunday, December 30, 2012

Mansion Hopping

I’m moving after living in a south Arlington, VA, apartment for three years. I recorded a video sharing why I’ll miss it, which you can view below. Besides the features in the video, I will miss the relatively inexpensive rent, giant weight room in the basement, and fellow tenants who talk to themselves. I’ll especially miss the Peruvian chicken eateries at every nearby intersection, now my go-to when I eat out.

From January through April I’ll live for free at my aunt and uncle’s beautiful northwest D.C. home while they’re away. I’ll live eight metro stops from work and 1,000 feet from the nearest embassy. My responsibilities will include sending them their mail and watering a plant if the maid or gardener tells me to. My aunt knows that is asking a lot and won’t overwhelm me with additional tasks.

I am the prototypical house sitter: clean and responsible. That got me thinking, Maybe my aunt has friends who need house sitters over the long summer? I’m not tied down by possessions (which are in storage). I’m not high-maintenance (see video below). And I can perform all house tasks so long as they don’t involve feeding reptiles and are less than three. I could temporarily live in several luxurious DC houses—I could mansion hop!

Hooooolz asked if such a temporary residence would bother me. “Don’t you want to feel like you’re settled?” she said.

I didn’t get what she meant until this week. Most of my possessions were moved last Saturday, and I’ve been living in my apartment with basically a sleeping bag and beach chair until year’s end. I do not need things: in fact, I was thrilled to donate many items. But I did feel stuck in time, unable to progress until I reached my less homeless-like state.

Aunt Flojo and Uncle Joker’s house will be an adventure and help me decide if I like temporary and DC living. In the meantime, I will grieve for my former residence…

Leia Mais…

Tuesday, December 25, 2012

Measure It

“Love, it’s a motherfucker, huh?” – Old School

TinyAppetite is determined to lose body fat by exercising an hour a day and barely eating. She does not have any tool to measure her gains, and instead relies on her appearance. That was my method early this year when I was embarrassed by my figure. TinyAppetite’s view of herself is also likely distorted.

Children work towards measurable goals: they are graded on schoolwork, try out for tiered teams (varsity and JV), and socialize in groups judged by popularity. How did adults become goalless, content just getting through the workday or workweek, and unwilling to measure changes in strength, fat or life?

TinyAppetite should not, however, become like me…

2012 goal: gain muscle
Once I maxed out my gym’s leg extension machine, I switched to the squat. That was one of four exercises I focused on exclusively, tracking every repetition. I used to describe my job function as “making spreadsheets,” but maybe that should describe my life function.
tracking quadriceps extension weight-training results on Excel
Leg extension exercise, measured in repetitions

2012 goal: maintain minimal body fat
By one perspective I did and will always reach this goal. But I don’t accept average; I shoot for the 98th percentile and unfortunately this goal clashes with the previous one (you have to eat to gain muscle). The system I devised failed me and after seven months off-diet I had jumped from 6% to 10% body fat. Considering I nearly purchased a $500 ultrasound device to measure my body fat, of course I make this into a spreadsheet.
tracking body fat percentage on Microsoft Excel chart
Body fat percentage, measured in millimeters pinched using body fat calipers

2012 goal: date Olivia Wilde or someone similar
Like I say for my stories, they can’t all be winners. But my seeming failure to reach this goal taught me about fluidity. I may not be dating my Olivia Wilde, but life is about making connections. No matter the trends we can see from spreadsheets that track health metrics, human feelings don’t abide by predictable functions. Emotions rise and fall like waves, and the two currents must be within a range of one another to create an avalanche.

I made a lasting connection unless I “turn into a total psychopath,” as she stated. If finding my Olivia Wilde is a fluid process, then so is attaining a goal. Sometimes moving forward requires taking a step back; getting up requires falling down. Maybe it takes patience—after all, I’ve noticed that things tend to work out in life let’s say 80% of the time.

Other things must be fluid, too. My on-diet and off-diet have converged. Why should I only allow myself to eat a cracker during a Cheat Lunch? In 2013 crackers are acceptable anytime (before 6:00 p.m. and in moderation as long as each is fewer than 20 calories).

Money is not fixed, reliant solely on salary—there are always ways to increase the difference between inflow and expenses. Mistakes and harsh words can be undone. Failure in one undertaking can be overshadowed by success in another. Severing a connection with one person can lead to a blossoming link with another.

Here’s to a fluid 2013…so long as I stay within 80% of 8.5% body fat!

Leia Mais…

Sunday, December 16, 2012

Quasi Sports Car

When I was fifteen I learned to drive on a 1986 beige Ford Taurus station wagon, the same car JD drove and called The Beige Banshee. Despite it “smoking” several times when JD drove it, the Banshee was good to me until it would stall when coming to a complete stop.

My parents were done pouring money into it and decided to purchase me a new car. When my dad called local dealerships one Chevy salesman said, “If you can drive the Taurus here then we’ll give you $300 for trade-in.” My dad got the Taurus there by maintaining some pressure on the accelerator the whole way.

Thanks to a dedicated career in acquisition and a GM MasterCard, my dad negotiated for a 1999 Chevrolet Cavalier coupe with 89 miles for under $10,000. I had the option for a different model with automatic locks and windows, but I opted for manual because I liked the rollers. The car came with a cassette player, air conditioning, and little else. But I wasn’t even sixteen and had my own brand new car.

One of the first of my friends with a car, I drove them everywhere: to school, weekend hangouts, Blockbuster, late afternoon fast food, Best Buy. But the journey, not the destination, was always the most fun. Topping at 85 down Hoadly Road (45 mph limit) or 100 down Prince William Parkway (55 mph limit) listening to my CD-of-the-week, we discussed girls and my instinct to spot police cars, with the windows rolled down. I wanted to name my Cavalier “Car Sweet Ass” and Big Easy insisted on “Give Me Fuck.”

The following year all my classmates recognized Car Sweet Ass. It sat in the closest spot in the first row of the student lot, facing a disabled parking sign. I was on crutches recovering from cancer surgery.

Most former classmates would be surprised that I still drive the same car, which is over 13 years old. Though, it isn’t as sweet. It has needed a new alternator, air conditioning compressor, and tires. It shakes when it reaches 75 mph and sometimes when idling. It makes funny noises.

The 12-disc CD changer my parents had bought as a birthday gift broke years ago, and more recently the radio stopped receiving frequencies for every station except ESPN Radio. I listened to music by plugging my mp3 player into the cassette deck through an adapter. But the cassette player spit out the tape half the time, so I often settled on ESPN Radio. Because my one station was sports, I was able to hold off on buying a new unit for months.

mp3 player connected to car stereo through tape cassette deck


In October I purchased a CD player with an auxiliary input. I joked that my car would now die on me. The next week Hurricane Sandy hit.

1999 Chevrolet Cavalier coupe receives new windshield due to Hurricane SandyShattered back windshield from Hurricane Sandy Stranded in Chicago as an internally displaced refugee, my apartment building manager called the morning after the storm reached Northern Virginia. My car’s back windshield had shattered. Wind forced the pummeling rain inside leaving the interior saturated and molding and the trunk flooded with four inches.

The car’s value varied from $800 to $2,000, and I was sure the cost to replace the windshield and restore the interior would exceed that. I drove Car Sweet Ass to the collision center and waited for an insurance estimate. At the least, I got to drive an Infiniti G37 rental for up to 20 days. Allstate could take its time.

The total bill to insurance came to $1,700 and either I was in good hands or Allstate needs to update its Blue Book. Transitioning from a luxury speed sedan back to Car Sweet Ass was retching. I could move my seat 2 ways instead of 20, had to push 10 times the force on the accelerator pedal as the G37 and roll my windows. But there’s a reason I learned to roll the passenger window down in less than two seconds while stretching across the car at high speeds.

I can nick my car without feeling bad. I can veer towards another driver hesitant to let me into his lane, knowing he’ll make room for a perceived crazy driver in a valueless car. My first car isn’t yet smoking, is still taking me to destinations at less than 75 mph, and Giving Me a Fucking bang for my (parents’) buck.

Leia Mais…

Friday, December 7, 2012

The Lovers: My December Cancer Peeps

The Cancer Calendar has had a great four-year run—Girls of Cancer, Dudes of Cancer, Passed Away Resulting from Cancer, and finally my personal Cancer People stories. This will be the final addition to the Calendar unless I suddenly have a change of heart (I'm only referring to the Cancer Calendar stories and not to the whole blog, which will continue on forever!). Enjoy.

“Daryl” and “Scooter”

I exited the small plane in Grand Junction, CO, after a connecting flight from Denver. I was supposed to meet my First Descents rock-climbing group to depart to our lodge in Moab, Utah, but I was starving and thought I had some free time first. I grabbed a sandwich and coffee at Subway.

One of the camp directors, Scooter, called and left a voicemail. Sweet onion chicken teriyaki took priority and he would have to wait. Then my mom called and left a voicemail. Then my mom texted. Then Scooter left another message.

I engulfed the sandwich and called my mom. Scooter had called her (she was listed as an emergency contact) saying the whole group was waiting for me and worried I had missed the flight. I refilled my coffee and rushed to baggage claim.

There they all were, standing around and waiting, fortunately not upset. Scooter was dressed in a giant blond afro wig and Daryl, the other camp director, dressed in his permanent smile. Since the trip participants were, unknowingly to me, all on the same flight, Daryl had asked if anyone saw me on the plane. “He’s 28 years old, likely white, and a cancer survivor.” Nobody raised his or her hand. Hooooolz later said she saw an oblivious guy near the front and thought it was me. Sounds about right.

The trip lasted five days and included “Camp Mom,” “Camp Dad,” one nurse, one First Descents headquarter program coordinator, one chef (and another who later joined for fun), climbing instructors, and two camp directors. Scooter was volunteering and taking a week off work where he was a hydraulic engineer. I think Daryl was a First Descents employee and one of its founders, and all the others were volunteers, but the jovial spirit for those paid and unpaid was the same.

Daryl and Scooter were helpful to a fault. They accommodated everyone’s skill and exhaustion level. When the group continued climbing two hours after we were supposed to have stopped, Daryl accepted that our chef (also his wife) might not be thrilled. They drove us everywhere, sometimes taking multiple trips if some had to leave early.

During our long hike, Scooter—who was built to haul—asked to carry my backpack for me. I declined and pushed forward through the sandy and rocky terrain. Thirty minutes later he asked again. I declined. Fifteen minutes later I thought of my then-new mantra— Justify Nothing, meaning never feel the need to justify cancer and its effects. For the sake of my hip I asked for help. “Scooter, actually would you mind carrying my bag? And my climbing harness and helmet?”

“No problem, Hippy.” He threw it on his shoulders which were already loaded with his and two other peoples’ bags and trudged along.

Daryl was also carved from a life of climbing, kayaking and surfing. I watched him belay Camp Dad, a big dude himself, on a vertical route with almost no holds, keeping the rope tight enough to support him with almost no give.

Their goofiness was even more evident. Scooter’s girlfriend recently gave birth to their son, and Scooter claimed his name was Danger. We are all certain Danger’s mother had a different name in mind, but equally certain Scooter is secretively teaching his son to respond to that one.

Daryl is a modern-day hippie with an unending supply of silly comments. Daryl once told Tink a dull joke that was only funny because of his smile and delivery, and then said, “Bad humor is all I’m good for…that, and love. Love always comes first.”

Daryl and Scooter have seen many survivors enter their camps, and several of them have passed away. Despite that, they’re the first to provide support when one of the campers mentions that her health status has declined; the first to congratulate her when things are stable or improving; the first to offer their love.

At First Descents I attained self-discovery, gained a hobby, made lifelong friends and a new nickname. But my greatest takeaway is to try and offer love, which is now who I am, and I feel whole because of it.

Some time after my trip a friend told me, after several drinks, that one of the saddest things in life is when you can't be with the person you want. I nodded.

We just have to keep offering bad humor and love, I thought.
First Descents group leaders Daryl and Scooter

Leia Mais…

Tuesday, December 4, 2012

Writer

Caffeinated and I chatted for hours over wine and coffee about many topics, including writing. She was working on a graduate school paper, and I had published my first work 20 years earlier. “You should get it framed,” she said.

“It was a terrible poem about washing dishes,” I said. “And I didn’t even know how to wash dishes or use a dishwasher until I was 25.”

Washing dishes is not fun.
I always try to say that I am done.
But it’s not so easy to say that you see.
It really isn’t easy to have time to drink my tea.
Washing dishes is not a fun job.
I always have to put my hand on the ugly, greasy, slob.
I have to throw the powdered cleanser on with the soap.
I want to get finished, but I don’t have much hope.
You can actually kind of say that it can be a rough time.
It’s gross, it’s sick, it’s really something like slime.
If you’ve been listening to me then you shall know,
Washing dishes is worse than raking leaves with your big toe.

Although Caffeinated and I weren’t fit for more dates, we kept in touch. When I later showed up in her Gchat list she clicked on my Google profile and discovered I’ve written about more than dishwashing. “How could you not mention that you published a book?!” she said.

“Sometimes it’s nice to communicate with people who haven’t, or know that they can, read all about me.”

framed cancer memoir, Twice: How I Became a Cancer Slaying Super Man Before I Turned 21
I had already framed a copy of Twice from each print run. But “Washing Dishes” led to embarrassment equal to the pride Twice commanded and I preferred the book my poem was in stay hidden on my bookshelf. Then curiosity took me, and I opened Anthology of Poetry by Young Americans and read the editor’s note. “…Children are natural poets. Poetry is play with language and language is still so new to them that it is a perfect fit. This poetry is filled with their ticklish energy and unrestrained concern. It is the best medium for young writers to express themselves…We would like to extend a special thanks to all the poets who participated and are expecting great things from them in the future.”

My first published literary work soon joined its successors.
framed Anthology of Poetry by Young Americans book

*

Despite feeling like a fake, I often described myself as a writer at happy hours because that was more interesting than my profession. Finally this past August I felt like a real writer. And now I get paid for it.

Weeks ago I started a new job as a writer/editor, branching away from consulting and down a new career path at nearly 29 years old. I am no longer hoping or pretending I’m doing the right thing at work. Despite me scoring 100 points higher in math than language on the SAT, I feel confident in my creative-destruction skills required for my new profession, and that my new job fits me.

Just don’t ask me about i.e. vs. e.g., lay vs. laid, I vs. me, etc.

Leia Mais…

Thursday, November 22, 2012

My Top 15: I’m Thankful For…

15. Twenty-two percent of my fantasy football team’s starting lineup (Willis McGahee and Rob Gronkowski) getting injured on the same day for the rest of the fantasy season.

14. Robert Griffin III playing for the Redskins and Tony Romo playing for the Cowboys.

13. My two-month diet ending the same week I start a new job at an office that seems likely to provide consistent holiday treats.

12. My five-year-old laptop approaching death just when new ones are available at slashed holiday rates Hanukkah and birthday gifts subsidize the majority of a new one.

11. The thirteen-year-old car my parents bought me when I was 15 still breathing Never having a car payment.

10. My leanness and left-hiplessness leading to a 26-inch waist that adds an additional tailoring cost to every new pair of pants (men's pants begin at a 28-inch waist).

9. My direct-from-Vietnam tailor selling suits so cheaply that even though she screwed up my suit pants and has not sent corrected ones after four months, the perfect suit jacket itself is still worth the full price.

8. Moe’s Southwest Grill just down the street from my building offering two Coke Freestyle Machines. The second is necessary after I deplete most of the flavors from the first on “Moe Mondays”.

7. The one-day gap in health insurance before my new policy begins occurring on a Saturday when I plan to sit on my La-Z-Boy all day I’ll be at a wedding in Charleston doing fun things.

6. No short-term health insurance policies offered for a single day (the minimum is one month).

5. Nothing unordinary happening to me on December 1, 2012.

4. The word "turducken". John Madden "booms" through football game cover

3. JD and me not screwing up Thanksgiving dinner as we take over duties from my mom while she rests her healing foot.

2. Not being allergic to turkey.

1. Sucking up to the turkey spirits to ensure nothing unordinary happens to me on December 1, 2012, despite me eating several pounds of that critter today.

Leia Mais…

Thursday, November 15, 2012

The Fiber: My November Cancer Peep

Mom’s Poor Feet

I want to sit down with boxes of the least nutritious breakfast cereals, a bowl, spoon, and a carton of almond milk in front of the TV for an upcoming Cheat Meal. My dad thinks I’m crazy to “waste a Cheat Meal,” but I think he’s crazy for not yearning for Cinnamon Toast Crunch. In my teen years I ate my cereal dry, which I accept is a little crazy, though I still enjoy it.

While receiving cancer treatment 11-12 years ago, dry cereal and pretzels were all I ate. My mom stashed shoulder bags with mini boxes of Kellogg’s and General Mills in the living room. For all 14 cycles of chemo and 6 neutropenia admittances she lugged those heavy bags around for me, her poor feet taking the brunt of the force.

After my cancer surgery my mom carried the cereal bags while pushing me in a wheelchair. The balance required to push and turn, while preventing the cereal from dropping and crumbling, caused lateral tension on my mom’s poor feet. I don’t blame her for running me into walls and doors. She may have even run me over her own poor feet.

While visiting me after my transplant, my mom spent much of her days on a recliner. But the hospital chose a knock-off La-Z-Boy that jerked up and down and was too firm. My mom’s poor feet would have been better off if she ran shoeless on hot coals or splintered particleboard.

When I returned home to recover from my transplant and sat watching NFL Sunday Ticket, screaming at the TV during Redskins games and shrieking with joy while watching all the other games, my mom stared terrified that I’d lost my mind. Nearly in a state of panicked unconsciousness, she stood rocking back and forth on her poor feet in ways humans aren't meant to move.

Diagnosed with an obscene variety of back diseases in a short time period—spondylolisthesis, stenosis, osteoarthritis, and degenerative disk disease—my mom dealt with the pain by compensating and, again, her poor feet took the brunt.

My parents’ kitchen renovation provided for deep cabinets where unopened cereal boxes remained in the back. If my mom suddenly ran out of Cinnamon Toast Crunch then she’d have to stand tall on her poor feet’s toes to reach more.

These compounded effects led to a ligament tear in her poor right foot five years ago and she underwent a faulty operation from a careless surgeon, leading to an extended and arduous recovery. It was inevitable that her poor left foot would also tear a ligament, which occurred months ago and she underwent surgery today to repair it. Fortunately, this time her surgeon is kind and has done everything he can to alleviate her poor feet and back and fears.

So, Mom’s Poor Feet, here’s to a speedy recovery so that you can join me for a breakfast cereal Cheat Meal and even fetch our box of Cinnamon Toast Crunch pushed deep into the cabinet. But instead of mini boxes like a decade ago, we’re going Costco-size.
Author Benjamin Rubenstein as a toddler playing with his mother at his birthday party

Leia Mais…

Monday, November 5, 2012

Critical Aspirations

When someone asks what I do I often say, “That depends: I do one thing for money and more interesting things for zero or negative money.”

It became clear when my book released two years ago that I would need to speak publicly, then one of my greatest fears. I had even selected college courses based on the likelihood I’d have to speak in front of the class. My friend, Bubbles, assured me I’d improve with practice, but I cowered under an assumption that speaking anxiety could never diminish.

But “coward” is banned from my Superman dictionary. I persevered.

I have come a long way from my terrorized voice-cracking high school presentations. I seek out and accept any speaking engagement, no matter the paid-time-off I must use or personal money I must spend. I have improved my body language, gestures, vocal variety, and cadence. My Toastmasters group considers me one of our best speakers.

I like asking people how they would spend their time each day if nothing else like money was considered. My answer could easily change, but I would write and share my story with others, a shocking turnaround from years ago when “cancer” was also banned from my Superman dictionary.

I prepare for every speech like it is my second (non-paying) job. But for my next speech I am preparing like my future depends on it. In four days I’ll speak for thirty minutes at the Critical Mass Young Adult Cancer Alliance 2012 Annual Conference, in Atlanta.

Kodak zx5 pocket camcorder for YouTube videosMy speaking agent asked for footage, so I bought an HD pocket camcorder with image stabilization to record myself. Hours of preparation still may not prevent a voice crack, so my friends may have crisp footage to laugh at. Unlike twelve years ago, I won’t put my notecards down and rush to my seat: “notecards” is not in my speaker dictionary.

Leia Mais…

Wednesday, October 31, 2012

The Rehabilitator: My October Cancer Peep

“Formula-6”

Following my 2001 surgery I received at-home physical therapy. I progressed from not knowing how to signal my hip muscles to move, to feeling twitches, to seeing twitches, to creating visible movement, millimeters at a time. After ten weeks I could begin weight-bearing and intense PT at the hospital clinic.

On a warm, beautiful March afternoon my dad pulled me away from my Field of Dreams and Triple Play Baseball spring training excitement to drive me to my first appointment with Formula-6, who was the PT clinic’s specialist: young, built, and formerly a competitive gymnast, cyclist, and tennis player.

Formula-6 pushed me when I used the leg press, walking rail, underwater treadmill and other equipment, and his hands-on stretching was torture. My initial terror that my delicate hip would rupture beyond repair was replaced with perpetual trust in him.

Formula-6 has yet to work with another person with an injury like mine, and I think in that clinic of mostly older patients with common problems he relished the challenge. Chemo and low blood counts were roadblocks overcome by accelerated progression when I was able. Boring breaks between sets were remedied by Formula-6 telling stories with his dry humor and South African accent: spraining his ankles so often that his feet sometimes flop over, or his bodybuilding buddies eating entire chickens for a snack.

I worked exclusively with Formula-6 2-to-3 hours a week for 14 months. Now I can walk miles at a time, move with surprising agility, and squat a respectable weight. I also limit myself to eating half a chicken in a sitting.

Formula-6 and I stayed in touch, grabbing lunch and providing video game and movie suggestions to each other. The next times I needed physical therapy I didn’t consider other providers, despite his new private office residing three times farther. Over the years I’ve asked him countless questions about nutrition, weight-training, and the new physics of my body. I consider Formula-6 a life adviser, a role I can only reciprocate when it comes to recommendations for DiCaprio movies or rotisserie chicken.

Last November I injured my shoulder by jerking down the pulleys before performing butterflies, a sign that I used too much weight for the exercise. I figured a shoulder injury was so common that any PT clinic would do, so I went to one down the street. I saw initial improvement, but that tapered. After additional months at this “human assembly line” PT clinic, three orthopedic surgeon consultations and one specialized MRI, the injury remained.

I then drove an hour away to see Formula-6. He correctly diagnosed me just from his initial evaluation and reading the MRI report. This led to dry-humor pokes at all the less helpful health practitioners I saw before him. Formula-6 is a diagnostician, physical therapist and physiatrist all in one. There is very little that stumps Formula-6 besides recalling full-length movies he has sat through and enjoyed, and the number of hours he watches F1 trials and races.

I have provided office support for Formula-6 part-time, watched his kids while he and his wife were away, and cursed with him on the golf course. Cancer probably gives an equal amount as it takes—in this case a lasting friendship. It is fitting that Formula-6 is my Halloween Cancer Peep because his wife loves the holiday and keeps their home decorated year-round, much like I’ve yet to package and store my electric menorah.
best physical therapist in Fairfax, VA

Leia Mais…

Thursday, October 25, 2012

I Could Have Been a Coxswain

I walked around the activities fair before my first year of college at UVA when someone called me over to his table display. “Hey dude, I'm on the club crew team. Are you a first-year?”

“Yeah.”

“Your small size would make you perfect for our team. You should come by the crew house to talk about it.”

“Thanks, but I can’t row.” Because cancer stole my left hip.

“That’s the thing, you don’t have to be able to row. We could really use you, and you’d be an important part of our team. I think you’d really enjoy it.”

“Sorry man, but no thanks.”

I continued walking, looking at other table displays, and pretending like I was going to participate in something. I visited the crew house a couple times in college just for their great parties.

Years later I visited UVA for a football game, and went out to Buddhist Biker Bar afterward where towering members of the crew team stood near. “They rushed me to be on their team during my first year,” I mentioned to my friend, Bandida. “No clue why—those giants could generate way more power than me.”

“They probably wanted you to be the coxswain—that’s the guy who sits in the front.”

I laughed at the name. “The what?”

“Have you seen The Skulls?”

“Yes, though I had a nonsexual man crush on Paul Walker, not Joshua Jackson.”

“…Well anyway, remember the guy who sat in the front facing the others and yelled at them to row faster? He was the coxswain. The coxswain doesn’t actually row.”

“No way, that could have been me?!” I shouted. “I would have been a perfect coxswain. Damn.” I sulked the rest of the night. I had walked away from crew ten years ago partly because I was painfully shy but mostly because I was afraid of having to mention my cancer and admit it made me incapable. That is one of my life’s few regrets.

*

My cancerous left ilium was removed on January 10, 2001, and the remaining bone and joint radiated, leaving them deformed and necrotic. I can never run or jump again.

Years after my surgery while at the gym with Zeke I accidentally performed a skip-like motion. My damaged left hip felt fine because the force of landing went through my right side. I smirked at Zeke. “What?” he said smiling.

I turned my attention back to the indoor track we were standing on and skipped away: elevated right, landed right, stepped left, repeated. My feet accelerated and stride grew as wind whooshed across my face. I completed a lap and burst into joyous laughter. After years of dreaming about running, I experienced that same adrenaline rush by tweaking the motion. I later labeled this movement “whipping”—part walk, part skip.

This past Saturday I spoke at a fundraiser celebrating an eight-year-old boy who is finishing up treatment for his second cancer. He currently uses a wheelchair with hopes that high-tech physical therapy will trigger lower leg abilities that will lead to him walking again. His parents teach him that there is nothing he cannot do.

I told the boy and audience Saturday, “After surgery I kept asking my surgeon, ‘When am I going to play tackle football again?’ Because I was unwilling to admit that I was less capable than anyone else, regardless of what was taken from me…But aha! I’m still no less capable than anyone else because of this thing I call ‘whipping.’” I demonstrated my favorite movement and received applause. Like me, the athletic boy can tweak activities so that he can participate. There is nothing he or I cannot do, so long as we open our minds.

Joshua Jackson has put on some lbs since The Skulls, but I’ll stay in top shape in case the opportunity to be a coxswain arises again.
Benjamin Rubenstein uses a rowing machine

Leia Mais…

Sunday, October 14, 2012

Acknowledgements

When I began this blog over five years ago, Mr. Mountain Dew and I debated how many total page loads it would take for me to become famous. He guessed in the five-digits; I guessed in the sevens. I’ll split the difference with Mr. Mountain Dew from a digits perspective (as opposed to the value of those digits) and consider myself famous now that Both Nuts has reached 100,000 hits.

StatCounter dashboard for tracking blogger hits

I have so many people to thank.

I’d like to thank my literary agent, K, for sticking with me for six-and-a-half years. I used to be a nag, complaining about all her edits and thinking my submitted draft was worthy of the National Book Award for Nonfiction. My business etiquette has thankfully improved and I now only contact her for pleasant reasons. I began Both Nuts based on K’s suggestion, and I enjoy improving its appearance and writing new stories even more than the groupies and other accompaniments. An average blog becomes stagnant after three months, but I’ll update mine for life.

I’d like to thank PingPongGirl and Hamburgers for editing most of my blog stories in the early years, not to mention my book’s first and second drafts, respectively. I compensated them with gift cards, belated complimentary copies of Twice, and a lifelong resume booster. In other words, if the value of their editing accrued interest then I’d owe them my firstborn. I might as well sign over ownership of my frozen sperm now. They could even take over cryobank payments from my parents (an awkward future blog story about that is inevitable).

I'd like to thank Mike Reda for designing my blog a couple years ago. Before then I had developed my blog header with a free trial of Adobe Fireworks. I'm hoping remnants of that have been wiped clean of the World Wide Web forever.

Though I create a blocking cookie so I don’t pad my own blog stats, I’d like to thank my dad for being responsible for 20-50% of the total hits. He subscribes via email but still checks the website each morning in case anyone commented. I receive a few comments a year.

I’d like to thank my readers from around the world who find Both Nuts through endlessly amusing search engine queries. My all-time favorite is “I love the cock inside me, my true story.” Of my blog’s recent keyword activity, I like the person from Athens, Georgia, who Googled “kelly kapowski cock,” and the Iranian who Googled “male feet lick.”

My first blog story encouraged my parents to never discuss the content of my book or blog, and they more or less have withheld from initiating awkward discussion. I’d like to thank them for their past and continued inhibition.

I’d like to thank my blog’s biggest fan (besides my family): a lovely young woman located in the Middle East, who checks in almost every day. She told me that she appreciates how approachable I am, and that one of her family members passed away from cancer.

I’d like to thank anyone who has ever written about or linked to Both Nuts, notably Sarah Kogod of The Washington Post and Iva Scoch who randomly found and linked to my blog for her Newsweek article. They’re the reason this blog briefly reached a PageRank of 4, possibly why my book was published, and unlikely why both my testicles are still intact.

I’d like to thank all my groupies for maintaining my normalcy and never bothering me in public. My life is so uninterrupted that it’s like I’m not even famous.

Leia Mais…

Monday, October 1, 2012

The Brightside: My September Cancer Peep

“Sunny”

My First Descents rock-climbing group discussed female sexual organs at a rate 5,000,000 times higher than during my usual conversations. That’s what happens when females outnumber males 2:1, the party consists of young cancer survivors who are used to divulging all aspects of bodily functioning, and the most gregarious  is an HPV-possessing cervical cancer survivor.

If “cancer survivor” had a prototypical appearance, 31-year-old Sunny lacked it. Sunny was super fit with a background in trapeze, and had inner strength that glowed brighter than her build. Sunny’s superesteem led to stories about her sex drive, first period, ovary-saving experimental operation, and the location of her cervix.

Sunny’s superesteem was contagious. I showed her (and Hooooolz) my OkCupid profile for review. Their comments led to me believing my profile was Gosling-esque, though they did not lead to an improvement to my 9% response rate. If only I were gay because I’m certain my male response rate would be at least 11%.

At three months post-treatment, Sunny was a new survivor, especially compared to Gnomers or KMac. She also hid from us (and maybe herself) a sense that her cancer remained, “the same way I know my feet are big,” she later described to me.

First Descents has its own social network called the “HUB,” which encourages us to maintain our tight group without concern for how outsiders will perceive our comments, because most others can’t relate. Fudge, the non-survivor adventure-writer who joined our group for an upcoming story, couldn’t handle these updates and turned off her HUB notifications. Some group mates reach out for words of encouragement. I, of course, write goofy and pointless notes. But I think we most look forward to updates from those still in treatment.

Snippets of these updates include:
“Scans came back showing growth in two small (~5mm) probable tumors in my lung…Not anything really serious, more inconvenient.”
"The doctors took out my ovaries…which were the size of softballs. They also took my appendix, which had a pea-sized tumor. Finally, they went after several very small tumors that were between the stomach and the colon.”
“I go under the knife today to get two more lumps removed from my lung. Should be pretty short and only stuck there for maybe four days.”
“I would be on [chemo] sort of indefinitely—doing scans every two months or so to see how things go. There are still some very small tumors in my abdomen that weren't prudent to go after in surgery (the surgeon got some, but not all, in addition to removing my 11cm ovaries and my apparently tumored appendix).”
“I had an xray of my hip…At least it doesn't look like Swiss cheese! (I'm being serious on that one)…I start radiation on my hip for sure and depending what is found on the MRI possibly my back and if necessary my cranium.”
“The other tumor has grown. So I dropped out of the clinical trial I was in and got crackin' on Plan C (I figure since plans A & B were a bust, Plan C will definitely work…you know, 3rd time's a charm!)…Surgery involves a radical hysterectomy, intraoperative radiation therapy, vaginal reconstruction, and probable bladder removal…They say it'll probably take about eight weeks until I'm back to normal everyday things and about a year before I'm fully recovered. Somebody is going to have put a harness on me to keep me tethered to the ground for an entire year! Yikes.”

I’m sure Fudge wants to know about her friends like Sunny—she just lacks the desensitization (and quasi-sociopathy) cancer provides in order to handle it. I don’t feel like I’m supposed to, and I’ll never apologize for it, but Lings and Sunny measure up to my Superman Complex. They also continue to refresh my perspective.

Sunny could use some mi sheberach for her upcoming trials, and fortunately she has plenty of it: she is a recurring guest on the The Jeff Probst Show (tune in tomorrow for her next appearance). The talk show website even has a tab for her. I told Sunny that I would ride her coattails to fame, and that she’d now need a bodyguard: I offered protection for negative $45.95 per hour.

Despite her fame, feel free to send your thoughts of healing because she could always use more. No way will this star be held down for a year.
Rock-climbing in Moab, Utah, through First Descents

Update March 5, 2014: Sunny passed away a month ago, on February 4, 2014, as a result of cancer.

Leia Mais…

Thursday, September 27, 2012

Washington Redskins Honorary Captain

“It’s one of my fears—to be on the big screen and everyone say ‘you suck,’” HollaAtYoBoy said.

I then fantasized being introduced for the coin toss before the Washington Redskins game: “And two-time cancer survivor Ben Rubenstein…” Before the PA announcer can finish, the crowd chants “Booooo!

This discussion didn’t arise out of the blue like HollaAtYoBoy’s drive-off-the-highway gestures had on our way to Beach Week years ago. In February I sent my book to the Redskins’ owner, Daniel Snyder, with an enclosed letter illustrating what his team meant to me throughout my cancer treatment. His assistant called me a month later saying that Mr. Snyder wanted me to be the honorary captain and official observer for the 2012 home opener. I followed up in July to ensure I hadn’t dreamed it. She confirmed the opportunity and said she’d call back in August with details. I didn’t hear from her, so in September I called the Redskins. His assistant left the organization, and after looking into it, the Redskins Charitable Foundation inked me in for the September 23 game against the Cincinnati Bengals. Days later, Sarah Kogod of The Washington Post contacted me. The Redskins had sent her a copy of the letter I wrote to Mr. Snyder and she wanted to write a piece on me and my upcoming team captainship. Two days later we spoke, and one day later—50.5 hours before the game—Sarah’s story published. The story spread rapidly and the response I received was congratulatory and full of enthusiasm (and jealousy).

SlimZ shook my hand before JD and I left his tailgate at 11:10 a.m. on Sunday. “He just wanted to shake London Fletcher’s hand through you,” JD later told me.

We arrived on the field at 11:30 and walked around. When considering my Make-A-Wish Foundation gift in 2000 I had nearly requested for me, JD and friends to play flag football with Redskins players at FedEx Field. Only that would have been cooler than this.

JD had taken less than 100 total photos with his nine-month-old iPhone. That more than doubled Sunday as he was on photography duty.

Ryan Kerrigan stretching during pre-game warmups
Ryan Kerrigan's calves are the size of my thigh
On the field before a Washington Redskins game
It took willpower for me not to eat the field to attain some form of permanence, even if it meant undigested grass lodged in my intestines
Media covers the Washington Redskins from FedEx Field
Too bad JD didn't have that camera to work with
Cincinnati Bengals warming up before Redskins game at FedEx Field
Humans weren't meant to get this big…
Fred Davis warming up before Washington Redskins game at FedEx
…Fred Davis included
Washington Redskins Honorary Captain before coin toss at FedEx Field
Now we're getting closer to normal human size. I'll ask Daniel Snyder if he can field a team of Rubensteins…
Meeting Daniel Snyder on FedEx Field before kickoff
Mr. Snyder (black suit) wasn't fond of the idea, though he was very chill and wearing sunglasses with slick-backed hair. I also asked rapper Wale (front right) if he was performing, though I should have recruited him to the Rubenstein team.
Meeting GM Bruce Allen on FedEx Field before kickoff
When GM Bruce Allen (black suit) shot down my idea, I was too depressed to ask offensive coordinator Kyle Shanahan (shaking my hand). He knew better than to tell me I had "no f***ing balls."
DeAngelo Hall warming up on FedEx Field before kickoff
DeAngelo Hall is too cool for socks. Despite his performance Sunday I still believe he's cool, and has balls.
Washington Redskins Honorary Captain for coin toss
The coin toss is approaching. My balls are intact, though my poo may not be.
Washington Redskins run onto field during introductions
The Redskins are coming!
Washington Redskins cheerleaders before gametime
JD got distracted. Trust me, they're coming.
Nearing kickoff at FedEx Field
Game time!
Robert Griffin III runs onto FedEx Field during Washington Redskins player introductions
The ovation for Robert Griffin III (middle of picture) was deafening. Skins fans haven't felt this kind of excitement in years.
Honorary Captain enters FedEx Field for Washington Redskins coin toss
My favorite picture: me smirking as I contemplate photographing RG3 mere seconds before I walk out for the coin toss…
Robert Griffin III warming up on FedEx Field before kickoff
…Of course I will photograph him from ten yards away


I was not provided much instruction prior to the coin toss. Let's watch the series of events:


Entering midfield with the players was an amazing rush. I doubt I received boos, though I can't even recall how the PA announcer introduced me, so I later asked Matte Ice. "Best selling author/baller," he joked.

After kickoff, JD and I were escorted to Mr. Snyder's suite. We passed the double wooden doors into a huge burgundy room with couches to the right and a bar to the left. A gourmet food buffet spread in front of us, which included Georgetown Cupcakes. We walked past our lunch and photos of Daniel Snyder arm wrestling Darrell Green, toward our seats. Three long rows of soft bucket chairs filled the length of the suite in front of the open view of the field. Each seat came with headphones to listen to the game on various stations, a game program, artesian water, and a name tag. JD and my seats were on the end in the first row. I sat next to Sandy Montag (a top sports agent), five chairs from Alan Greenspan, and on the opposite end as Daniel and Tanya Snyder. We met Clinton Portis who spent much time at the bar. Sandy introduced me to Joe Theismann, one of his clients, whose handshake strength I was unable to mimic.

Televisions displayed everywhere, including the bathroom.
Daniel Snyder's owner's box men's bathroom urinal


The napkins and most everything displayed the Redskins emblem.
View from Daniel Snyder's owner's box at FedEx Field


Sandy remarked it was the nicest owner's box in the league. There is nowhere I'd rather watch the Washington Redskins play.

At halftime JD and I walked around. We stopped in front of a large picture of the '99 team at the White House, when the woman on the couch asked, "Are you Ben?"

We hadn't even noticed Daniel Snyder's wife and family in front of us. Tanya told us how the owner's box had previously been more secluded, but she worked to create an open and welcoming atmosphere. She said that because of Daniel's passion for the team, there are times he prefers to get away from the cameras. He must have spent the end of that painful first half in his cave, wherever that was (the Redskins were losing 24-10). "After the game we'll all get a picture with your book," she said before informing someone to retrieve her copy of Twice.

I laughed. "Honestly, that's not necessary," I said.

JD and I returned to our seats for the second half, along with my third plate of desserts. I looked over at Mrs. Snyder at times: always attentive, often rooting the Redskins on. Mr. Snyder waffled between his front-row seat and his cave.

The Redskins dominated the third quarter scoring two touchdowns. In the fourth quarter the Bengals tacked on two touchdowns, and RG3 ran for one. Down seven points with 1:47 left in the game, the Redskins had the ball at their own 2 yardline. RG3 had already led the offense to more points in each of his first three games than the Redskins typically scored in the past 12 years. Now, we needed seven more.

Mr. Snyder came out from his cave and approached the front row, next to JD, to watch the rookie. Eleven-yard pass, then a twelve-yard pass. Daniel was screaming, "Let's go Robert! Come on, baby! Let's go Robert!"

JD and I couldn't believe the billionaire owner of our beloved team cared this much. In that moment we realized that if Snyder committed murder then we'd still have a certain respect for him.

Robert Griffin scrambled for 19 yards and was hit way out of bounds to gain another 15 on a Bengals personal foul. Now, Snyder was screaming semi-obscenities at the refs and/or Bengals player. Had JD and I been watching at home we'd have done the same thing, but now Snyder's behavior encouraged us to partake a little. We wondered if Snyder approached us because we were real fans as opposed to some others in the box who attended because they held status.

With 29 seconds left RG3 was sacked for a 15-yard loss, and then Fred Davis was called for a false start with 7 seconds left. The Redskins then were called for a personal foul penalty because, in short, the replacement refs were clueless. Now at their own 41 yardline, RG3 heaved a pass that went incomplete, ending the game. It was furiously exciting, with an unfortunate conclusion.

We sat in disbelief of our surroundings before getting up to leave. I waved goodbye to Mrs. Snyder, but she met us back at the couches. "Mr. Snyder really wanted to talk more with you, but he's with the press now and not in the best mood. He's so disappointed because he wanted the team to win so he could give you the game ball. We'll have to bring you back another time, if you want." I looked at JD speechless, who chuckled and replied, "Of course we'd love to come back. This was amazing."

Tanya said we could wait around in case Mr. Snyder came back, but ten minutes later she insisted we get a picture with Twice since he wasn't likely to get away from the press.
Tanya Snyder and family in Redskins owner's box with Benjamin Rubenstein


Of all the powerful individuals in the box that day, she spoke to JD and me for half an hour. She is kind as can be, a fellow cancer survivor, and hopefully serious about having me back to get that game ball.

Though the coin toss was an adrenaline-filled blur, the whole experience was unforgettable thanks to the owner of the team I so proudly captained that day.

Leia Mais…

Friday, September 21, 2012

Redskins and the Washington Post

In the Washington Post's "DC Sports Bog" today I was featured in a story about my relationship with the Washington Redskins, my favorite football team, and how I will be an honorary team captain this Sunday. You can read the story below; stay tuned for my own blog story about what is sure to be an awesome experience.
http://www.washingtonpost.com/blogs/dc-sports-bog/post/two-time-cancer-survivor-will-be-honorary-team-captain-at-redskins-bengals-game/2012/09/21/1ac2c8b8-03f1-11e2-91e7-2962c74e7738_blog.html

Leia Mais…

Friday, September 14, 2012

The Journey of Ewing Sarcoma

It was warm outside and within his high school’s walls, but Ben shivered. Rosh Hashanah—the new year—is approaching, and I get this? he thought, longing to time warp to the following September to bypass the intense cancer treatment ahead of him.

Ben’s life had become a whirlwind: doctors, so many of them, some called “fellows” which he guessed meant that they were nice; painless tests in cylinders and in rooms where the technician refused to remain; painful tests with needles; vials to collect his blood, pee, and semen.

Now just two days before beginning treatment Ben sat in his school library, void of the jackhammering cylinder, beeping poles and silent screaming of the cancer halls. His assignment was to write a paper for Journalism, but he was going to get an “A” without effort anyway, even if he had never been diagnosed. Ben opened Microsoft Paint instead.

Perspective of a Ewing's sarcoma tumor
Ben knew his tumor was called Ewing’s sarcoma, which was composed of round blue cells. I wonder if the tumor bleeds blue like in the alien video games, he thought, chuckling. He drew his blue-speckled tumor. He gave the tumor spiky hair, big eyes and a wide smile. But why was the tumor happy since he was going to lose? Ben undid the mouth and instead drew an open one filled with terror. Ewing better be afraid of me, coming in over “5 foot nothin', 100 and nothin'”…though not by much. Ben chuckled again.

He printed the drawing of his scared tumor, who he named Ewing Sarcoma, and attached the picture to the refrigerator at home. He normally ignored Ewing Sarcoma. But sometimes, after returning from the hospital for long stretches to receive chemo or in immunodeficient isolation, Ben would stare at Ewing. He tried crafting a clever put down, but failed, blaming “chemo brain,” though insults were never his strong suit. “Fuck you, you spiky fuck.” There, simple enough.

*

Ewing remained unflinching in his flat environment, despite the cursing, spitting and physical violence. He knew there must be a dent behind him large enough to break the seal. No wonder why his ass was always so cold. He wanted to cry, not for himself but for Ben, his creator and reason for existence. Ewing wanted to consume Ben’s chemo and suffering, but understood his role. Ben needed him for release, and Ewing would sacrifice anything to help.

Ewing’s greatest sacrifice was letting Ben crumple him into a ball after Ben completed treatment, and throw him in the garbage. Ewing found a sliver of light. Is Ben’s dad seriously throwing a banana peel on me? When dirty Windex rags came next, Ewing wished for more fruit. At least now he could cry because Ben no longer needed him; actually, Ben would try to go each day without letting cancer cross through his mind. Ewing had became a reminder.

Ewing wiggled free of his two dimensions and bolted when no one was looking. Once outside he looked at Ben through the window and sniffled. I’ll return when you need me. I promise. Ewing couldn’t bare it any longer, so he said a prayer for Ben and hopped away, without looking back.

Ewing’s new life purpose was out there, somewhere, so he ventured through the forest in search. Wow, the world was huge to him! The colors, creatures and dimensions were overwhelming. Which critters should he fear, how much sun leads to a burn or skin cancer, which plant oil soothes the rash on his head? Ewing would need help to survive.

Ewing found that most insects and animals snarled at him, with two exceptions: earthworms and baby mice. But the earthly-colored and elongated worm reminded him of that banana peel, and he needed to put Ben out of his mind. One day, with some liquid courage thanks to fermented sewage he gulped, Ewing approached a like-sized baby mouse. He offered the rash cream he had developed on his own as a peace offering. The timid baby mouse accepted the cream, and rubbed it under his tail. “Oh, thank you. I’m never eating pepper jack cheese again. My name is Pong, what’s yours?”

“I’m Ewing.”

“Listen, Ewing, I’m an orphan thanks to my bastard dad, but that’s a long story. Let’s stick together.”

Ewing was delighted with his pal and grew to enjoy his freedom, though he suspected there never was another purpose in life: there was only fun. Ewing and Pong bartered their rash cream for narcotics and sewage alcohol. The addiction took hold quickly. They couldn’t make enough rash cream, so Ewing engaged in sexual encounters with any willing participant, despite his lack of reproductive organs. He first cursed Ben for this, and then himself for resenting his creator.

Ewing and Pong were sometimes robbed. And there was that one instance of sexual abuse. But altogether they did pretty well together, traveling the forest and accumulating adventures. I just wish the blackouts weren’t so severe, Ewing thought. And why doesn’t Pong get them, too?

One morning, Ewing woke up blind. He wiped his big, blue eyes clean and realized the blockage had been hardened, sewage-scented vomit. He had many bleeding tumor ulcers. Worse yet, he recalled nothing. “Pong, what happened?”

“Dude, you hooked us up with the best stuff last night! You should be glad you can’t remember in this case!”

Ewing’s entire being was sore, but the sharpest pain was in his heart. He now understood his “fun” was all just camouflage for his life unfulfilled. He loved his friend, but Pong would never understand or relate to his desires. And despite constantly searching for another tumor perception like him, he was the only one; no human had ever drawn a tumor perception besides Ben.

Ewing entered a depressed slumber and woke up days later in a cold sweat. Something pulsed through Ewing. He brushed it off as part of his sadness and withdrawal. But the pain that began in his head expanded, and Ewing could only think one thing: he was dying of cancer.

He wanted to enter death’s gates alone, so he said goodbye to his wonderful companion, Pong, and departed unknowingly in the direction of Ben. Ewing pondered God, the fairness of the world, and his afterlife. He hopped all day and night, and by the next morning his pain dissipated. Does a spreading tumor diminish pain sensations as death approaches? He looked around for a sign. What he found was the same scenery he encountered years earlier, when he left Ben. This pain wasn’t a tumor at all: it was a beacon because Ben needed Ewing again! Just as Ewing couldn’t will others to see the world as Ben had in his own creation years before, Ben couldn’t will himself to forget cancer.

Ewing hopped with great strides, ignoring crickets and earthworms. He picked up speed to a near glide until he reached his home again. Ewing stopped, unable to move. He was peering at Ben through his open bedroom window as his eyes drowned in tears of joy. This moment made all the hangovers and lost years worth the journey. Ewing excelled at telling time via the sun's position, and noted it was September 14, 2012, at 3:40 p.m., give or take. That meant that Ben was precisely eleven years cancer-free.

Ewing didn’t know what to do: how would he present himself as a talking, living, three-dimensional tumor perception? Ewing’s thoughts were disrupted when Ben’s phone rang. Ewing eavesdropped. “I know, eleven years is crazy,” Ben spoke into the receiver. I knew it! Ewing thought, and continued listening. “But it’s different now. I used to think that life stopped until I reached that single milestone where I could consider myself cancer-free. And the accumulation of cancer-free anniversaries was the gold standard.

“But what if there was no end of treatment? Like, you just lived your life with cancer where the only goal is to stay alive; to live? Am I somehow superior, or more of a survivor, just because I have this luxury of celebrating treatment's completion? No, I don’t think so.

“Did you know that some people celebrate the diagnosis? And I couldn’t even tell you when mine was. I think really we’re all celebrating the same thing: that cancer struck our paths and altered them irreparably, leading to freedom even if not from the physical disease itself.

“It’s silly, but when I was first diagnosed I drew a picture of my perception of my tumor. It was this spotted blob that was terrified because I was about to annihilate him. I used that picture to light my rage, and it worked. But what if I was looking at it all wrong, like if my tunneled approach prevented me from really living free? Now that I've been cancer-free for so long I think I wouldn't undo my diagnosis if I had the choice.

“…I know, I know, gibberish. Anyway, thanks for the cancer-free anniversary congrats, and I’ll talk to you later.”

To Ben, Ewing had been a symbol of how to destroy cancer; now, Ben needed a symbol of how to live a complete life thanks to cancer. But he didn’t need Ewing either as a friend or a symbol, because cancer was a deep part of Ben now. Ben's reminder came from within.

Ewing slouched out of site and sobbed, sobbed, sobbed through his wide open mouth. He regretted nothing of his journey. He had served his creator, left to allow Ben’s proper self-discovery, and returned to see his own purpose come full circle.

Ewing’s mouth began twitching. He hopped towards the nearest pond to look at his reflection, fearing the site of his blood. Rather than blood, he saw that his mouth changed shape and was no longer filled with terror. He was smiling.

Ewing ventured towards the forest again, no looking back, only forward to the journey in front. He understood his new life purpose: to share Ben’s perspective with the whole wide world. If everyone diagnosed with cancer drew their tumor perception then they would use that for motivation to survive, and eventually through self-discovery attain their sense of organic wholeness, like Ben had. Ewing could benefit humanity.

He thought, chuckling, that he could also benefit himself from the existence of other tumor perceptions who could finally relate to him. There was just one thing he could never benefit from. "Fuck Ben for creating me without sex organs," Ewing said aloud, laughing wildly.

Author's note: This published on my 11th anniversary of surviving bone cancer, in 2012. On my 12th anniversary in 2013, I completed this short story with two more installments. You can continue reading Ewing's journey here: Ewing Sarcoma and a Purpose Driven Life

Disclaimer: The character Ewing Sarcoma and its likeness are the property of Benjamin Rubenstein. All rights reserved.

Leia Mais…

Tuesday, September 11, 2012

Hamburgers Gets Spicy

Every time I developed a new health issue, I playfully asked Hamburgers, “Now whose medical history would you rather have?” I have never stated that I’d rather have his: HIV since he was three years old and all its inconveniences, psychological heaviness, and (sometimes near-fatal) complications. Part of my bias stemmed from people generally fearing the unknown. But despite that fear, Hamburgers agreed with me: he’d rather have my cancers and all they entail. The only time he admitted that he’d keep his HIV was nearly nine years ago, when I discovered I had severe bone loss.

We no longer compare illnesses because the years and issues have piled so high that it’s not feasible or useful. He and I have—so far—demonstrated we can take anything without reaching our thresholds. I suspect the medical history of the last one standing will be the one we each prefer.

With my calorie-restricting diet (this one, not this one), and the subsequent propaganda I’ve fed to Hamburgers, we can live to 150 years old. By then I’ll be using a walking stick and he a wheelchair, mostly because his current grumpiness will worsen and combine with an absence of vanity. When we go out, he’ll make me push him. Instead, I’ll poke his chair along with my stick as he mumbles derogatory slurs toward the monkeys trained to take our lunch orders. My metabolism will be so slow that I’ll only need five green beans for subsistence, but Hamburgers will abolish calorie-restricting in favor of binging. Things will get ugly when the monkey teases Hamburgers about being overweight and he snags my walking stick, enraged. “You haven’t a clue how hard it is to live with HIV for 147 years, you Simus!” (Simian-American will be the proper term, until Sim becomes politically correct in 2149.)

The one health condition neither of us wants is chronic priapism. Can you imagine our canasta game mates’ reactions every time we jump up to celebrate a winning hand? I’ll take HIV over that any day.

Leia Mais…

Thursday, August 30, 2012

The Bond: My August Cancer Peep

“Hamburgers”

When I was diagnosed with cancer twelve years ago, I reached out to my friend, Hamburgers. He had hemophilia, a serious enough disease that would allow him to relate to me, I thought. His knowledge was more extensive than I expected.

I wanted to know the decibel level of an MRI. “A jackhammer,” he replied. When I learned I'd be treated at NIH, he described the atmosphere and even the treatment floor. “Does the waiting room still have that big fish tank?” he asked. And when I wanted to wash my hands every seven seconds, he busted out instant hand sanitizer. “IHS!” he excitedly announced.

I had not considered why Hamburgers possessed broad knowledge about mitigating infection and one of the world’s largest research hospitals. Maybe he owned stock in Purell and sold it to cancer people? Hamburgers did possess a strong knowledge of markets.

Halfway through my year of treatment, Hamburgers shared a secret that connected the dots: he had been infected with HIV when he was three years old. We talked and laughed about disease for the next three hours, as we consumed and partially digested fake meat from Taco Bell. Our biggest howls were when we entered the restaurant, both on crutches—his injury hemophilia-related, mine cancer.

Hamburgers was the only person I talked to about cancer. My No Complaining rule prohibited me from discussing it, but Hamburgers was exempt. And I was one of the first friends he told. Our bond strengthened at the University of Virginia. We would chat until just before the sun came up—sometimes with Halo, sometimes without. When we felt that we were discussing disease and their related struggles too much, then we switched topics to football, candy and girls.

The struggle we discussed most was revelation. Who has a right to know? Does it make us Sick Kids to bring it up? Does the knowledge forever change others’ perceptions of us? How would girls accept us with that baggage? Does Hamburgers have to justify withholding that secret to long-term friends?

I couldn’t hide cancer—my lift, limp and scars revealed the truth. And when I wrote my book and began this blog, I couldn’t mask my cancer with the world’s supply of L’Oreal. Cancer is a chunk of who I am, and now that I can’t hide it, I don’t try. I am happier and more complete this way. The transformation from my former guarded self to the current open one is astonishing.

Hamburgers didn’t need a spec of makeup to camouflage his HIV. Before college he told a handful of friends and maybe another handful during college. Many times he wanted to tell friends but couldn’t follow through, sometimes for lack of courage and other times to not disrupt pleasant conversation.

Like me, Hamburgers is also now in a better place. He is married, as healthy as he’s been in 25 years, and very active in the hemophiliac community. Friends who were not aware of his secret were shocked when they read my book (he approved my disclosure each of the several dozen times I asked). In fact, my book was the push he needed.

One month ago Hamburgers posted on Facebook that he had celebrated the 25th anniversary of his HIV diagnosis. I didn’t think anything of it at first glance. Then the next day I recalled his posting and texted him immediately, “Holy shit…did you Facebook your HIV?”

I think it is human nature to want to share our stories. I have and will continue to tell mine. And Hamburgers now tells his. I hope he feels happier and more complete because of it.

Hamburgers and I no longer live near each other, no longer go to college, and rarely play video games. But our bond remains. I was very proud of him at his wedding. I am proud that his wife, Bubble, calls me his “boyfriend.” And I feel most proud of Hamburgers for overcoming one of his biggest demons and sharing his story.

Here’s to 25 more years of us remaining healthy and cancer-free. And if in our old age we find ourselves on crutches together, then I’ll suggest we step up to El Taco.
Playing guitar at Greenstone Overlook

Leia Mais…