Monday, November 28, 2011

Holiday Donations

While attending the University of Virginia I spotted an ad for a cat allergy study. I had developed an allergy to felines and most everything else after my stem cell transplant, presumably from my anonymous donor. I participated in the study by donating blood for $85. It was the second easiest money-making opportunity of my life, behind betting Omega that UVA would beat William & Mary in football three months ago.

I expected to participate in the follow-up study for additional money, but my allergies were too robust, making my blood unuseful.

That study leads me to wonder what other bodily fluids I can donate for cash. I’ve received so many drugs, and had so many diseases, that surely labs everywhere want to study me. Here are the top five studies I’m keeping an eye out for:

  1. Transgender DNA: It’s Not a Choice! My anonymous umbilical cord stem cell donor was female. So not only has my blood type changed, but the DNA of my stem cells now have the same sex chromosome (XX). Let me be clear that this affects me in no way, except by clearing the way for me to become a serial killer so long as I frame a woman.
  2. Cancer Treatment Leads to X-Men Mutations. There aren't too many people who have endured more cancer treatment than me. The question is whether I’ve received enough treatment to reach the mutation threshold, or if I’m just shy. Also, what kind of mutation are we talking about? X-ray vision would be nice; the ability to read women's minds even better. Then again, maybe not.
  3. Urinalysis: Four Daily Liters Sprays Fountain of Youth. I drink a gallon of water a day. I have yet to see evidence that excessive water is healthy. But my transgender mutation premonition is that water cleans all body systems and is the cure-all. If this study proves that water also keeps me youthful, then I’ll do whatever it takes to hit that gallon mark, and I mean taking Bear Grylls’ pee-drinking to a whole new level.
  4. Chemo-Saturated Organs a Jewel for Alien Biopsies. How much are these extra-terrestrials willing to pay, in what currency, and are there any long-term effects of the organ biopsies? Oh, and which organs are we talking about? All organs are on the table except the brain and testes…well, how much are they paying again?
  5. Post-Transplant Semen Effective on Emu, Not Human, Eggs. Let me be clear that I will have no part in playing God by creating species hybrids…well, how much are they willing to pay again?
Emu world's ugliest animal

Leia Mais…

Wednesday, November 23, 2011

My Redskins Photo Shoot

I was invited to accompany patients from Children’s National Medical Center to the Redskins game against the Tampa Bay Buccaneers last December 12. It was cold and rainy, but fortunately when you are in the elements with cancer patients, the hospital staff tends to bring extra ponchos, gloves, blankets, and sneaked-in water and snacks.

The Skins dominated the first half with Ryan Torain rushing for 158 yards, though Gano missed two field goals of 34 and 24 yards. But, they’re the Redskins, and allowed Tampa to take the lead with under four minutes left.

We left our seats in the fourth quarter and caught the end of the game on a TV inside the stadium. In a bizarre event, the scoreboard showed the incorrect down. Our group huddled together wondering if the game was over, confused, when McNabb threw possibly his only non-bounce pass of the game to Santana Moss for a touchdown with seconds left. The Redskins were down by one point.

“They should try a two-point conversion because Gano may miss the extra point," I said.

Coach Shanahan did not hear me. The snap sailed over the holder’s head and they lost by one point.

Fortunately when you are in the presence of cancer patients, you get to meet the players: all of them bar Santana and McNabb. After one of the worst losses of their careers on a dreary late fall evening. But only pediatric cancer patients could meet the angry players.

I’m only slightly embarrassed with my pretension to be a decade younger with a life-threatening disease. I'm not at all embarrassed that I snagged the end seat, making this my own personal Redskins photo shoot.

Washington Redskins' Kedric Golston signing autographs at FedEx Field
Kedric Golston is beatable in a cagefight
Washington Redskins' London Fletcher signing autographs at FedEx Field
London Fletcher wears a scarf?
Washington Redskins' Graham Gano signing autographs at FedEx Field
"How's it going?" I said to Gano. "I've been better," he said. My  feelings toward him went from hatred to pity.
Washington Redskins' Chris Cooley signing autographs at FedEx Field
Chris Cooley was thrilled to meet us Cancer People
Washington Redskins' DeAngelo Hall signing autographs at FedEx Field
"Your former college Virginia Tech will get crushed by Stanford in the Orange Bowl," I should have told DeAngelo Hall
Washington Redskins signed football
Adding this to my Wall of Fame

Leia Mais…

Friday, November 18, 2011


Grow your mustache for Movember"I heard November is when guys grow mustaches for prostate cancer awareness," I said to JD last month. "I think it's called "Movember."

"That doesn't make sense," he said. "It seems like it would be called 'Stachevember' or 'Nobeardvember."

"Good point. I must've heard wrong."

Apparently not: Movember: an event started by Australian men to raise awareness for men's health issues via the growth of mustaches which inevitably lead to conversation about the origin and purpose of said mustaches.

Here are the rules:

  1. Once registered at each mo bro must begin the 1st of Movember with a clean shaven face.
  2. For the entire month of Movember each mo bro must grow and groom a moustache.
  3. There is to be no joining of the mo to your side burns. (That’s considered a beard.)
  4. There is to be no joining of the handlebars to your chin. (That’s considered a goatee.)
  5. Each mo bro must conduct himself like a true country gentleman.
Except for unfortunate bros with alopecia areata and maybe burn victims, I have a most atypical sprout resulting from total body irradiation, targeted radiation, lots of chemo and general cancerness. (For a challenge, use your imagination; for a full understanding, I reveal in my book.) However, I do believe I could grow a sick mobrostache. Maybe next year, especially if the YouTube video "Have Sex With a Guy With a Mustache Day*" catches fire.

My mo bro numero uno, LadyKiller, hopes it doesn't take a year for that fire to begin. LadyKiller had earned that nickname as a freshman in high school when he garnered the infatuation of the senior class president. His gorgeous mo bro stache may push women (and men) from infatuation to obsession. LadyKiller could use some donations* for his efforts on his mo bro space here. Remember, funds raised support awareness, education, survivorship and research.

Leia Mais…

Wednesday, November 9, 2011

I Am a Cancer Survivor (Part IV of IV)

Read these first:
I Am a Cancer Survivor (Part I of IV)
I Am a Cancer Survivor (Part II of IV)
I Am a Cancer Survivor (Part III of IV)

“Don’t talk about death, I got too much life to live” – Ice Cube & Krayzie Bone, "Until We Rich"

In our final counseling session, Shari and I speak more about the future than the past: jobs, girls, growing up. “I don’t want to see you in a suckass job with no relationship,” she says.

We say goodbye, hug each other, and I leave. It is a warm, cloudy, spring afternoon when I step outside. The sky is gray, the leaves are green, and oriole birds are out in search of food and mates. I look across Emmet Street at the old, brown brick building, Newcomb Hall, which looks like all the other old buildings at UVA. Students are walking around campus, studying under the trees, at one with nature, just as Thomas Jefferson would have liked. I am reminded of the day I stepped out of the hospital in Minnesota and saw my dad standing near his beloved minivan, eager to sweep me away to safety.

In Phase I of my life, my dreams knew no bounds. I had ambitions of running for the Redskins, costarring a dark comedy opposite Mila Kunis, and being an engineer. In Phase II, the cancers, I had a single focus. Life was simple and purposeful. I miss those moments, like when I would find that temporary patch of health in the midst of total chaos. I miss time being frozen, unchanged until my cancer status changed. In some sick way, I miss the suffering. What if the climax of my life ended when my first cancer ended?

Now that I am well, the possibilities are endless again. I enter my bathroom, close the door, and flip on the light. I approach the mirror. I stare into the blackness of my eyes, the same eyes of Pre-Cancer Ben whose picture I carry in my wallet. I finally see myself in the mirror.

My eyes moisten, twinkle in the mirror and collect salty fluid. I think of how much I liked being a boy with a head full of dreams. There is no shaking, moaning, head jerking or snot flow. I am not convulsing and staring at the ceiling trying to fight it. I am in control. I am not afraid.

My right eye accumulates faster than my left one. My vision is blurring, and then I feel it—a single tear drop streams down my cheek, leaving a watery trail: proof. Proof that the code that governed my life—the same one that helped me cheat death and simultaneously stymied my growth—could be bent or broken. I’ve gotten this far and there is no telling where I will head next.

Much more of my journey can be found in my memoir, Twice

Leia Mais…

Tuesday, November 8, 2011

I Am a Cancer Survivor (Part III of IV)

Read these first:
I Am a Cancer Survivor (Part I of IV)
I Am a Cancer Survivor (Part II of IV)

“Once upon a time I could take anything” – Rise Against, "This is Letting Go"

In my final year at the University of Virginia I took Problems of Personal Adjustment, a supposed gut class. I had to get counseling for my class project—that’s how I justified it. Otherwise I’d be admitting that I was a pussy, one of those people who can’t deal with cancer. Shari—a petite, dirty blond mother of two young girls—was my counselor. Before seeing her I would’ve rather been forced to sit through a Barbara Streisand concert than spend one second with a counselor.

Shari thinks I went numb. “Dealing with cancer can be so overwhelming that we turn off emotions until we get through it. But it doesn’t seem to be working anymore, does it?”

Shari challenged me with questions, and I was learning more of me that I didn’t know was there. Even when my class requirement was met, I kept coming.

“If you were forced to send your mother a message, what would it say?” she asked.

“She’ll figure it out when the book comes out,” I said.

Shari didn’t let me off the hook, so I thought about it more. “I guess I’d want to thank her.”

That was one of the first times I considered the vastness of my parents’ sacrifices. But Shari wasn’t satisfied and had me ponder the question for our next weekly session. Then, I said, “If I had to tell my mom one thing, then I would want to say that I’m okay. She worries about me all the time and I just wish she knew that I’m alright—always have been and always will be.”

Shari made me think about sadness. She said that by not experiencing sadness, I’m depriving myself of a part of life. “I sometimes experience sadness,” I pleaded, before realizing she was referring to crying. Ever since I told Shari I hadn’t cried since September 2000, she was both fascinated and concerned. So, she pushed me until I understood my aversion.

The day after I had learned of my tumor, I wanted to cry. I weighed the extent of my cry, and chose to sob. My body shook, moans escaped, my head jerked around, and snot poured out of my nose. I quickly felt awkward, so I brought myself under control and vowed to never cry again.

That had been one of my defining moments—when I thought I was somehow special. Not just unique in my ability to deal with cancer, but as if there was something in me nobody else on Earth had. After that cry, Superman was born.

Shari asked to see the photo of me that I carried in my wallet. The photo had been taken right before I began treatment, a symbol of who I used to be, who I could’ve continued being if it wasn’t for that uncontrolled group of malignant cells. That 16-year-old Benjamin was free to chase down balls on the tennis court, and free to pace his way to a five-year bachelor’s degree like his brother, and free to run the girls wild with his curly locks. I loved that kid. He had energy and humor, hope and health.

“This was when you were 16?” Shari said, grinning at my youthful appearance. “Do you look at it often?”

“No,” I said, grabbing the picture from her. But before I lodged it back in my wallet, I stared at the teenage boy looking back at me. “God, I miss playing football. My friend, NoCommonSense, and I used to call ourselves the Bash Brothers. We had this one play where, in the huddle, I’d say ‘The Play?’ and he’d just nod his head. When I snapped the ball he’d run a fly route, I’d pump fake, then throw up a bomb for a touchdown.”

Boom! Right then I understood that I was no longer 16 years old and never would be again. My days of just being a kid, as well as fighting cancer, were long gone. My hip, hair, innocence and adolescence were all stolen from me. In a sense, that 16-year-old boy died.

“I bet you’d do just about anything to be 16 again, wouldn’t you?”

Something was happening. I felt funny. My voice softened. My eyes glistened and I breathed deeply. I was losing control. “Just let go,” Shari said.

I was terrified to let go—as scared as I’d ever been. “I can’t,” I managed to say. “This isn’t me. I don’t let things get to me like everyone else. I’m better than those people.”

“You can cry and still be strong. It isn’t one or the other. At the same time you can be happy that you’re alive and angry about what happened to you.”

My body felt helpless. But I wouldn’t succumb, fighting my hardest to hold the tears back. Does crying make me less of a human being? If Pre-Cancer Ben saw me cry would he be ashamed of me? What if God really did endow me with some kind of unique gift? Will I throw that away if I cry?

“It’s okay, I’m right here,” Shari said. “Just let go.”

My stomach ached. I was sweating. I wanted to break everything in the room, yet collapse at the same time. My body wanted to let go, but I resisted. Then, a line from the movie Munich crossed my mind: “We are supposed to be righteous. That's a beautiful thing. And we're losing it. If I lose that, that's everything. That's my soul.”

If I cry, will I lose part of my soul and never get it back?

I gained control and saved my tears for another day.

Keep reading: I Am a Cancer Survivor (Part IV of IV)

Leia Mais…

Monday, November 7, 2011

I Am a Cancer Survivor (Part II of IV)

Read this first: I Am a Cancer Survivor (Part I of IV)

“I'll show you mine if you show me yours first
Let's compare scars, I'll tell you whose is worse” – Rise Against, "Swing Life Away"

There used to be a correct answer for my hip—perform my exercises and push through the pain. Knowing that I would never play tackle football again didn’t mean I couldn’t try. Things changed years ago, when exercise was no longer the answer, and could have been detrimental. There is no way of knowing how much is too much or not enough.

I strive for a healthy lifestyle. I choose poultry and fresh fruit over beef and processed snacks. I exercise like a maniac and am well-rested. I regularly research healthier ways to live.

I also gravitate toward a Gus Burger—a greasy hamburger topped with a fried egg—and a whole box of Thin Mint cookies for dessert. I want to stay up drinking myself stupid every Friday and Saturday night. My desire for normalcy causes me to question my new lifestyle. My desire to stay healthy and cancer-free causes me to wonder if normal behavior is harmful.

These aren’t algebra problems. They don’t have correct answers. If I knew hours of demanding hip exercises were beneficial, then I’d perform them. But I don’t know. And I don’t know how to balance a “normal” life with a healthy one.

How about my parents’ balance? I doubt they have truly been angry at me since before it all started. When I was still in college, they phoned me twice a week instead of once. When I said, “But you never called JD twice a week,” they said, “What’s wrong, you don’t want to talk to us?”

When I shoveled snow, my dad would say, “No, you stay inside. You don’t need to be doing that.” Of course I would shovel faster and harder.

I’m not ungrateful for my parents’ sacrifices: I could write a book on them, but I'll stick with two examples. For 8-12 days following each cycle of chemotherapy, I received an injection to boost my white blood cells. I injected myself in my minimal belly fat, but hated it: my pain threshold is enormous, but I have trouble inflicting it on myself. My mom refused to administer my shot because she was afraid she’d hurt me, so my dad was left with the responsibility. My parents' nurse-friend visited each night and delivered the shot in the back of my arm, teaching my dad how. Eventually, he was ready to try on his own. He pushed the needle too far and it entered my triceps. It stung and I screamed at him, "That hurt like shit! What's wrong with you, why can't you just get it right?" He called his nurse-friend to re-teach him, again and again. Soon my dad became an expert and even called himself "Dr. Shots."

My mom spent the most time caring for me. On nearly every trip to the hospital, through the countless drips of poison, the ferocious hurls, the days I could hardly walk or talk, the intensely painful rehab sessions, the lonely days and nights—she was there. At times I was like an infant, unable to do most everything on my own. I never paid attention to her feelings or desires. Her career, friends, health, and hobbies took a backseat to me. And what did I give back to her? Nothing. What do I think she wanted from me? Nothing.

Keep reading: I Am a Cancer Survivor (Part III of IV)

Leia Mais…

Sunday, November 6, 2011

I Am a Cancer Survivor (Part I of IV)

Continued from “My Cancer Story": So Far Away (Part III of III)
Read "My Cancer Story" from the beginning: The Golden Age (Part I of III)

“The best thing in life is health” – Ice Cube & Krayzie Bone, "Until We Rich"

My crystal ball displays someone familiar—it’s Benjamin Rubenstein, but he’s different. I see him as a junior in high school with a huge He-Bro out on the tennis court. He’s wearing a headband to keep his long, corkscrew curls out of his eyes. Does he know how ridiculous he looks? He’s playing Froddy, who broke another racket. Yep, Ben just secured the number two spot on the varsity tennis team.

Ben is talking to Mr. Spunkmeyer now, requesting a college letter of recommendation. Ben wants to follow his big brother and attend Virginia Tech. His mom pushes him toward the University of Virginia, but his grades are subpar. In the meantime, he’s enjoying high school and doesn’t want to leave. He continues playing neighborhood football after school each day, and still has delusions that he will be a Washington Redskin.

That kid loves his university. He joined his brother’s fraternity and dragged Zeke with him. Like most Hokies, Ben is on the five-year plan and will finish college with a degree in engineering. I wonder if he even realizes how blessed he is, how unbelievably close he was to getting struck with cancer not once, but twice…

My emotions are at war when I focus on my cancer experiences. I’m happy I’m no longer in the hospital. Many of the most draining, boring, and worst days of my life occurred there. But those days have vanished.

I also feel sad when comparing my past and present. I lived with a sense of purpose that is unmatched nowadays. Cancer has given me a new way to view the world, but it’ll never be the same as when I was 16 or 19 years old. Although I assured myself I wouldn't take anything for granted, that’s impossible now that I’m healthy.

While on spring break vacation in Mexico years ago, I attempted something new and frightening—tell my new female friend about my cancers and how they affected me. I wanted to drop my guard, desperately, but I didn’t know how.

When I finally shared with her, I expected to feel invigorated and refreshed, but I didn’t. So, I told a pretty girl that I survived cancer twice, that I endured 15½ months of intense physical therapy in order to walk again, that I stayed in a single hospital room for 65 consecutive days. What did I really accomplish? Just one more person who saw me as the Sick Kid.

The next day when we passed at the pool, I said hello. I wondered how much of our conversation she remembered from the previous night. I wondered how many of her friends she told my story. I wondered if she saw me differently. Did she pity me? If she was interested in me before, did I ruin that by showing her my true self? Did your past define you, and if so, was that my true self? How can some cancer survivors tell everyone while I struggle to tell one? How can I be so good at surviving cancer, yet so bad at discussing it?

My past has caught up with me, and I’m beginning to embrace it. Hopefully I can use my past experiences to live a fuller life in the future.

Though as much as some things change like my willingness to divulge my story, others stay the same. Like when I noticed a strange marking on my rib cage which resembled a bug. I thought an insect burrowed through my skin like in The Mummy and would cause a killer infection. My dad looked at the bug imprint and said, “Didn’t you get a skin biopsy there? It looks like stitch marks.”

Or the time I thought I might’ve had a brain tumor because I felt strange after minor ear surgery. I only felt weird because I had been taking Percocet.

Or the time I lost a memory bet with Bubble and was convinced the radiation caused brain damage, simply because I’ve always had a good episodic memory.

And while on that same spring break in Mexico, I forgot to spread sunscreen on my left shin. The next day it blistered. I remembered reading that one bad sunburn doubles your chances of developing malignant melanoma, the most dangerous type of skin cancer.

I could already foresee a red spot on my shin 15 years later. It’s expanding at a rapid pace, and I can't slow it down. Eventually it spreads and kills me, all because I forgot to put sunscreen on one small part of my body on one day in Mexico.

More things stay the same. I still can’t listen to country music without remembering riding home in my dad’s minivan after being discharged from the hospital, each song telling a story, a life lesson.

I can’t listen to or watch Rocky without remembering why I kept the soundtrack with me at all times, just in case, how my love for the character will never cease, how “his whole life was a million-to-one shot,” and if he could do it, I could do it, if Rocky could get back up then so could I.

I can't take a drive with the windows down and the stereo on without remembering that first summer of driving freedom at sixteen years old, with my arm hanging out and blowing with the wind, how my friends and I didn't need alcohol or an event to have loads of fun, how just cruising was enough, how that age held such power and promise, how I held such power and promise, how Pre-Cancer Ben was such a quiet and innocent kid who never hurt anybody and didn't deserve to get cancer.

Keep reading: I Am a Cancer Survivor (Part II of IV)

Leia Mais…