Saturday, April 30, 2011

Passed Away Resulting from Cancer: Poh Nikbar April

Walter Elias Disney

As a boy I watched cartoons, including shows featuring He-Man and Teenage Mutant Ninja Turtles, as well as shorter segments featuring Popeye and Bugs Bunny. Weekend mornings I would eat my cereal on a TV tray, despite the kitchen table standing just a few feet away, and laugh away at the animated characters. The special mornings were those spent with Mickey Mouse and Donald Duck on The Disney Channel.

I wonder if Walt Disney anticipated the impact his loveable characters would have on American children. Disney cartoons and movies are trumped by the theme parks, Disneyland and Disney World. When my parents told me and JD that we’d be vacationing in Disney World when I was seven and then again at twelve, we broke out in hysterics. We had always had great summer trips at beaches, new cities, and various amusement parks, but Disney World was the shit.

In November, 1966, an X-ray discovered a tumor in Walt Disney’s left lung. Five days later a biopsy proved that it was malignant. It had spread across his entire lung, which was removed and followed by chemotherapy sessions. Walt passed away on December 15 of that same year.

Now, I wonder how he’d feel about the Disney empire—five vacation resorts, eleven theme parks, two water parks, thirty-nine hotels, eight movie studios, six record labels, eleven TV networks, and one broadcast station, for an annual revenue of $35 billion. This is the nature of the capitalist machine. I am not opposed—the world would not be where it is today without it. But, surely there are drawbacks. The Walt Disney Company is nothing like it used to be. Now the name evokes thoughts of ABC and ESPN more than Pluto. Disney’s revenue has doubled over the last 15 years, almost entirely because of its media networks. If ESPN8 “The Ocho” comes to fruition then old Walt is pulling a Jesus resurrection and will dominate the world as a giant rat. Walter Rat won't be so lovable.
Walt Disney holding Mickey

Leia Mais…

Saturday, April 23, 2011

I Am Iron Man

Over eight years ago I visited Johns Hopkins Hospital, where I was told I had a second cancer and would require a bone marrow transplant in order to live past 22 years old. I considered getting treated there, before deciding on the University of Minnesota instead.

This past Wednesday, I returned to Hopkins. I drove by the same decrepit neighborhoods and apartment complex my parents would have rented from, had I chosen to be treated there. I walked down the same halls of the gorgeous Weinberg building, up the same escalators, and past the same flower shop.

But this time was different. I am healthy, strong, and cancer-free. I have graduated from the University of Virginia, held a consulting position for two years, published a book, and have an eight-year-old immune system that may be better than my original.

Some others would hate returning to Hopkins after what I had been through eight years ago. The sights and smells were the same, and reminded me of a time when my bone marrow was dying rapidly in front of my eyes.

But actually I found it invigorating. I felt like a crisp, pressed Brooks Brother shirt in a pile of used towels from Super 8. My biceps bulged larger, my immune system circulated my vessels faster, and my limp abruptly turned into a strut. My unethical perspective that I detail in my book has persevered. I do not think I am better than anyone else, or that others are weak because they succumbed to cancer while I survived twice. But I need to feel this way. I thrived on it when I had cancer, as I thrived on it three days ago.

My body has excessive ferritin from all the blood transfusions I’ve received, and Hopkins is the closest facility with the specialized MRI machine able to detect the iron accumulation in my liver. The MRI performed last year showed five times the upper limit of normal. I’ve been getting bled out every three weeks for the past eighteen months, so hopefully the one I had done at Hopkins three days ago shows improvement. Whether it does or doesn’t, my vampire therapy may be coming to an end. If the MRI shows no improvement, then not much can be done to rid my body of iron. Robert Downey, Jr. may have met his match.

Whatever the result, it’s not worth my concern for the time being. If you aren’t aware, I received an umbilical cord stem cell transplant, where the cells were frozen for years before being thawed for my transplant on April 24, 2003. For the first several years after the transplant, I caught colds all the time—I was an adult with a baby immune system. Now, I rarely get sick, and have even eased up on my germophobia. I trust my immune system to protect me, and want to expose it to more germs to test it, to strengthen it.

My donor—the stem cells from an umbilical cord—was a female, so my blood has two of the same sex chromosome, XX, instead of XY. Transgender jokes (…not that there’s anything wrong with that) are fair game this time of year. As are jokes about my spoiled little bratty girl (aka my immune system), who will become interested in boys soon which may complicate things a tad. For her birthday tomorrow she wants one of those Abercrombie & Fitch push-up bras designed for children. My little pumpkin usually gets what she wants, but an eight-year-old bone marrow in a bra is beyond creepy.

I had thought my donor would forever remain anonymous, but my friend, Prizefighter, informed me that, with proper consent, I can communicate openly with her family. I think they’d want to know that their decision to donate the baby’s umbilical cord saved my life. It’s simple and free for the mother. I only wish more mothers were aware of the process and donated the umbilical cord to save others.

As I do every year, I ask that you wish my young bone marrow a happy birthday. She really likes the attention. Just don’t expect a thank-you card, partly because she’s lazy but mostly because I’m too cheap to pay for postage.

Next up is my ten-year cancer-free anniversary from my first cancer. The celebration will occur in San Diego from September 15-18, 2011. My great friend, T2theZ, is joining me in celebration, as he always does. I’m hoping to finagle free San Diego Padres tickets. Hey I’m cheap, remember? Those jokes are fair game, too.

Leia Mais…

Wednesday, April 20, 2011

Birthright Israel: We’re Coming Back (Part III of ?)

Read these first:
Birthright Israel: We’re Coming Back (Part I of ?)
Birthright Israel: We’re Coming Back (Part II of ?)

I was not looking forward to Israeli food leading up to my trip. I know, I know: But Ben, Mediterranean food is great! That’s what everyone says. I didn't agree during my first trip to Israel when JD and I ate McDonald’s every chance we got.

I have broadened my horizons since then, and as it turns out, Israeli meals weren’t much different than what I normally eat: lots of vegetables, chicken and maybe some rice. There were some notable exceptions, beginning with hummus.

Israelis eat hummus with everything; on anything. I could have made a case for the nutritional value of berries or cauliflower, but they apparently wouldn’t hold a finger to the superfood, hummus. I promised Republican that I’d try it—I did, and was unable to swallow the putrid substance.

Since hummus and falafel share the main ingredient, chickpeas, I was reluctant to try the latter. But I wanted to prove Republican wrong again on her culinary predictions. It turns out that falafel—an overstuffed pita with cucumber salad, pickles, onions, lots of hot sauce and void of anything resembling hummus—is the world’s superfood.

Shawarma in IsraelInstead of McDonald’s, I alternated between falafel and shawarma. Egg suggested we order “half-and-half”—shawarma and falafel in the same pita. I still salivate over the thought, but ultimately only God can decide which is better.

Back in Arlington following the trip, I was in shawarma and falafel withdrawal. I craved them for lunch every day, and tried a couple Mediterranean eateries in Arlington, but they were a joke in comparison. These two lunch dishes are the reason Jerusalem is the focus of the world, and don’t believe otherwise.

During the Sabbath, we (somewhat) followed traditions, like not photographing others or traveling, which means I couldn’t grab my normal heavenly lunch. Instead I played basketball on the court next to the hostel. Shooting around or playing H.O.R.S.E. is one of my favorite activities. Before cancer, I loved playing Knockout, 21, or actual basketball games with friends. But I can’t do that any longer.

On the first nice spring day following my cancer surgery a decade ago, my friends had come to my house like usual to play PlayStation 2. But first they had wanted to play basketball. I sat in a lawn chair and watched. And then years later during college summer breaks, my friends would get small games together, so I’d either sit and watch or shoot by myself on the opposite basket. I was not bitter—they were playing a game I loved but could no longer participate, and I would not bring them down to my level just because of that.

So on that court in Israel, when someone suggested we play 21, I said, “You guys go ahead and play,” and sat down to watch. When that game ended, Maximus invited me back onto the court to play 2-on-2. “Nah, I can’t run,” I said.

“So you’ll be on my team. I’ve seen your killer shot, so you won’t even need to run,” Maximus said.

I accepted Maximus’ invitation. I felt silly at first, walking across the court as the others ran. I pump-faked before shooting, even though I obviously wasn’t about to drive the lane. Eventually I took to my role, moving across the court as fast as I could, hopping on only my right leg, and getting in my opponent’s face to alter his shot. Maximus smothered his man, grabbed all the rebounds, drained his shots, and even passed to me for my mid-range daggers. He and I won the game.

Maximus saw my physical handicap, taught me how to move past it, and won with me in spite of it. Maximus, far more kind than mighty: thank you. Thank you.

I wouldn’t be playing much basketball after entering the Dead Sea. Because of the high concentration of salt, the Dead Sea is known for its healing abilities. Dead Sea mud supposedly has a healing effect, as well, so before going into the slimy water we lubed up.

Benjamin Rubenstein and Birthright Israel group at Dead Sea, Israel

I’m not so sure about the mud, but I believe in the healing effects of the water. I had a small cut on my finger that nearly disappeared later that day. But the Dead Sea also caused significant harm. All the rocks leading into the depths of the sea were either slippery or jagged, and were painfully hard and awkward to step on. Each step was a struggle, and by the time I got in and out, I had slipped and caught myself dozens of times. I was scraped, gashed, and dripping with blood after my battle with the Dead Sea rocks.
Scraped up from Dead SeaScraped up from Dead Sea

This garnered the attention of our armed escort, also our medic, WillYouMarryMe. A soldier, medic, and illustrator, there isn’t much that WillYouMarryMe can’t do. She could add model to her list of talents if she wanted to.
Beautiful medic and soldier on Birthright Israel trip
Beautiful medic and soldier on Birthright Israel trip

…No but seriously, will you marry me?

Keep reading:
Birthright Israel: We're Coming Back (Part IV of ?)

Leia Mais…

Saturday, April 9, 2011

A Day in the Life of a Bone Marrow Transplant Patient

My dad has a more predictable life than anyone I know. He walks at least four miles every day and has eaten the same lunch at work for the past fifteen years. He hasn’t eaten steak, cheesecake, real ice cream, a hamburger, donuts or any other high-cholesterol foods in over twenty years. He claims he’s allergic to any food he doesn’t like. He designates in advance a shirt and breakfast cereal for each day of the week, and doesn’t switch them around ever. He knows when he’s going to buy new shoes months ahead of time. He gets a haircut exactly four weeks after his previous one. He thinks there should be a traffic light at every four-way intersection. He calls everyone with a British accent “Ole Brits.” He calls all horses “Old Nags.”

Every Sunday during football season, he drinks a cream soda sometime between 2:00 and 3:00, no sooner, no later. He buys groceries every Saturday morning, and then begins the list for the next week. He still wears jean shorts and always tucks in his shirts. He knows he’ll love movies with Arnold Schwarzenegger, Sylvester Stallone, Steven Seagal or any other action actor before he watches them. He records movies he’s watched in a notebook, which dates back to 1985. He’s never disliked a single country song. If he forgets a woman’s name, he just calls her Susan because he thinks that’s his best chance of guessing right. He even called Jill, our neighbor, Susan after knowing her twenty-five years. He sticks address labels all over his trashcan, for fear the garbage man will switch it with the neighbor’s.

But following my transplant, my routines became even more set than my dad’s. His predictable life looked like Lindsay Lohan’s compared to mine. After my transplant, every day was exactly like the previous day. Here was my schedule:

7:30 a.m.: I become semiconscious as my nurse gives me pills: Tylenol and Benadryl. Hopefully I don’t puke them up.

8:00 a.m.: The janitor is mopping my floor, cleaning my bathroom and taking out my trash. She works as quietly as she can.

8:15 a.m.: My nurse enters my room with my bag of platelets. After the transfusion, I go back to sleep, which is much easier after the Benadryl hits me.

10:10 a.m.: I become fully conscious and examine my surroundings. My breakfast tray is in the corner, already cold since it was served two-and-a-half hours ago. I wasn’t going to eat it, anyway.

10:15 a.m.: The doctors make their rounds and we talk about my newest health problem. The doctors switch every two weeks, but they’re always excellent. My health problems also change, but they always suck.

10:30 a.m.: My parents arrive, and my dad hands me my warm-up pants, t-shirt and sweatshirt. My dad puts my left sock on for me because my abdominal muscles have weakened, and bending causes spasms. He seems to enjoy it, purposely putting it on upside down.

10:35 a.m.: I get out of bed and brush my teeth.

10:45 a.m.: I respond to emails on the computer. I look out my huge window from time to time to sharpen my people-watching skills. “What’s the weather like, Dad?” I ask.

“It’s cold as usual. Too cold for me. You can’t go out there without warm clothing, that’s for sure,” my dad replies. “And when I took my walk this morning by the river, the geese chased me again. Those are mean critters.”

11:00 a.m.: My nursing assistant takes my temperature and blood pressure, and changes my bed sheets.

11:30 a.m.: I go for my morning stroll, meaning I step on the treadmill and walk as long as I can.

11:33 a.m.: I can barely breathe. I stop walking and sit on the big chair to catch my breath. It takes at least five minutes for my heart rate to drop below one hundred beats per minute.

11:40 a.m.: I lie down and watch a DVD.

12:00 a.m.: My nurse brings me more Tylenol and Benadryl so that I can receive my red blood cell transfusion.

12:45 p.m.: My transfusion begins. Later, I may get a second platelet transfusion depending on my new blood results. My blood is taken twice a day.

2:00 p.m.: I take my afternoon nap. My mom joins me as she falls asleep in her chair.

3:30 p.m.: I wake up and watch TV. My hospital room has cable, but doesn’t get ESPN. My dad wrote a letter asking if ESPN could be made available, but the hospital administrator said it wasn’t part of their satellite package. So I watch the afternoon sitcom lineup on TBS: The Drew Carey Show, Everybody Loves Raymond, Home Improvement, Friends and Seinfeld. There are only so many movies I can watch each day.

4:00 p.m.: JD calls and we talk for a bit. “If you don’t feel up to talking, then don’t worry about it,” my brother says. I also receive a couple calls each week from friends. My relatives call much more frequently, but since those calls are strictly health-related, I make my mom handle them.

5:40 p.m.: I send everybody out of the room for my early-evening vomit.

6:00 p.m.: I brush my teeth because stomach acid erodes the enamel. I was instructed to trash my regular toothbrush and use Toothettes, which are very soft brushes. This and not walking barefoot are the two hospital rules I break outright.

6:05 p.m.: My nurse administers a dose of Phenergan, an antinausea drug—not enough to put me to sleep, but enough so that I can drift off if I want to. “I need to calm my stomach,” I say. Really, I just enjoy the feeling. My parents encourage me to take Phenergan before my vomit, in hopes of preventing it. “If I’m going to puke, then I’m going to puke,” I say.

7:00 p.m.: My dad and I watch the NBA Playoffs. Some people hate the NBA, including Hamburgers, who thinks they’re all thugs. Not me. I watch almost every game during the playoffs. Without ESPN, I am unable to see the Pistons beat the Magic after being down in the series 3-1, despite Tracy McGrady proclaiming near-victory.

8:00 p.m.: My mom tires and leaves for the night.

9:00 p.m.: I take my shower. I’m cold and depleted of energy, but I can’t evade this particular hospital rule.

10:15 p.m.: Before heading to the apartment, my dad stands at the foot of my bed watching me, stroking my toes, and says, “Sleep well tonight. I’ll see you in the morning. I love you.”

I keep my eyes on Charles Barkley and the rest of the TNT NBA analysts as my rage builds from this coddling. “Fucking get the motherfuck off me,” the rage wants to say. “I love you, too,” I manage to echo.

10:30 p.m.: Goodnight.

This schedule, varying little from day to day, was the backdrop to problems. Problems I had never heard of. Things going wrong in ways I had not known were even possible. My routine was interrupted with the beginnings of a fever and a rash which didn’t go away for six months. Maybe predictability is genetic.

Related story:
A Day in the Life of a Chemo Patient

Leia Mais…

Sunday, April 3, 2011

The Great Orator: Part II

Read this first:
The Great Orator

“What year did you graduate?”

“2002,” I said.

“Wow, you’re old!”

Thus went my conversation with a high schooler two weeks ago while visiting my alma mater, Osbourn Park, to speak to three classes about survival. Just three days prior I had won my Toastmasters International club’s prized “Best Speaker” award. I won for my Ice Breaker, the first Toastmasters speech. I stood in front of twenty club members and delivered a well-rehearsed, six-minute talk on my cancer story, from diagnosis through surgery.

Afterward, I received written comments such as, “Great inspirational speech. You helped me put my life in perspective.” And, “BRAVO! I needed an inspirational speech tonight and you really delivered. Thank you!”

Back at Osbourn Park, I was on a roll thinking I could speak to these engaged young people and inspire them just as I had at Toastmasters. It just hadn’t occurred to me that, to them, I am old.

I captured the students with my opening about wanting to walk through an airport security checkpoint with my lifted shoe intact, only to have the TSA worker unholster his weapon and proclaim that I have an RPG under my foot. I lost them thereafter with my cancer discussion. They’re only sixteen, and if I hadn’t developed cancer at that age then I wouldn’t relate, either.

I shared what it’s like to have your life change instantly, and to feel extremely unique, and how to gain perspective. How my physical handicap prevents participation in certain activities, but it also makes me feel fortunate that I can still walk, unlike some others who cannot.

The nursing class—one of the three in attendance—was captured, but some students were dozing off. The minimal feedback at the end was another sign that I didn’t succeed.

But, my visit was not a failure. I learned an important lesson: target the discussion to my particular audience. And by that I mean throw in random references to Justin Bieber.

Also, you don’t have to influence everyone: sometimes touching one individual makes it worthwhile. There was a young man who watched me intently, and raised his hand to ask a couple relevant questions. When my time was up, he escorted me back to my car. While walking, he shared personal issues he’d been struggling with, things he needed to talk about but were difficult to disclose. He looked to me for guidance because of what I shared with him: that I survived cancer twice, but you can also be a survivor without ever having had cancer, and it is important to find your own survival methods no matter what other people think.

I really wished I knew how to help him. I wanted to give him answers on what to do, how to cope. But, I couldn’t totally relate, and had little to offer besides some encouragement. He is a survivor, as well—not of cancer but of life.

Halfway to my car we were stopped by an old security guard. My escort did not have a pass, and I couldn’t find my visitor’s sticker, so the security guard took us to the main office. The security guard threatened to give the kid a referral. “Really?” he asked as worry crept over his face.

When I was in high school I was probably even more timid than this kid, but this old fuckface was enraging me. “It’s fine,” I said. “I’ll just head to my car and he’ll go back to class. His teacher told him to go with me.”

The power-hungry guard did not budge. At the office I described the incident and made absolutely certain the student wasn’t going to get in trouble.

Rattled by the guard, the kid never finished sharing his story with me. Before he rushed away down the hall, I gave him my card and said to contact me whenever he wants.

Later that day I thanked his teacher via email for having me visit her classes, and told her how fond I was of the kid. She told me he "is extraordinary—most people can’t fathom his depth."

I hope to hear from him. More importantly, I really hope he can find his own way.

Leia Mais…