Monday, July 7, 2014

Recovering from my superman complex

As published on reimagine

You have a tumor,” my mother told me. I was 16 years old. I didn’t cry that day, but I did force tears the day after. I was alone in a small basement room, yet the sobbing humiliated me. I vowed to never cry again. I decided I would become superhuman.

I received treatment at the National Institutes of Health (NIH) Clinical Center in Bethesda, Maryland, for Ewing’s sarcoma, a rare type of bone cancer. I would often compare myself to other patients on the pediatric floor. Besides our identical hairless appearance and disease, we had nothing in common. Some of them would call the poison “cheemy” to make it seem less frightening and grumble about needle pricks. I learned not to wince. They are sick, I would tell myself. I am not. Cancer will forever change them; I won’t let cancer affect me. And in this way my delusion flourished.

I soon learned how to turn off my emotions as if they were connected to a digital switch. I did this by feeling shame when experiencing certain feelings like sadness, and sinful when exhibiting them. When my nurse told me that she’d never seen a patient recover from vincristine, Adriamycin and Cytoxan (also known as VAC) chemo cycles as quickly as I did, my delusion grew to the extent that it took on a life of its own.

But being superhuman required more sacrifices and restrictions on my humanity. Keep reading, here.

Leia Mais…

Tuesday, June 24, 2014

A Gala, a Trophy, and $50,000 for Cancer Research

Read this first: I Hope My Friends Forgive Me: What It’s Like to Fundraise

In less than 20 minutes at the rehearsal for candidates before the Man & Woman of the Year Grand Finale Gala, I broke protocol and walked onstage to meet myself.

Benjamin Rubenstein meeting himself as a candidate for Man & Woman of the Year
Candidates were instructed to arrive to rehearsal fully dressed. My custom-tailored super fly tuxedo direct from Vietnam was delayed in production for three weeks, forcing me to rent a slim-fit tux from Men’s Wearhouse. Two lessons for you aspiring economists: being slim costs extra (my tux rental cost $180 versus a much cheaper standard fit), and that $180 is called a sunk cost. Temporarily losing my bowtie is called this is why nobody takes Ben to galas, but fortunately my dad is clutch and brought me his bowtie from the ‘70s.

Benjamin Rubenstein wearing tuxedo for Man & Woman of the Year
At my next gala I look forward to sporting my super fly tux (which arrived a week after the Grand Finale Gala). Super pretty girls love galas.
Gala-ing at the Leukemia & Lympoma Society Grand Finale Gala
When I had left my apartment for the Gala after failing to find my bowtie, I was content with my fundraising efforts. Perhaps the only other times in my life I’ve tried so hard to achieve something involved cancer, a girl, cancer and PlayStation 2. There was nothing else I could have done to raise $50,000 and I was simply going to have fun.

The Leukemia & Lymphoma Society knows how to put on a production. It packed about 750 people into The Ritz-Carlton, Washington D.C. to support me and my fellow candidates, and to spend money. One of the auction items was getting your caricature on the wall at Palm Restaurant – Tyson’s Corner, which had an estimated value of $15,000.

The auction ended and we entered the ballroom for dinner and the program consisting of videos with Dexter and the Boy & Girl of the Year, speeches, and candidate introductions. I headed backstage before mine. I watched the small backstage monitor as the interview I had recorded in March played in the ballroom: pictures throughout my life interspersed with me sharing my dual cancer story, why I chose to fundraise, and to whom I dedicated the campaign.

My smile grew wider as the three-minute video progressed. The emcee announced my name and I reminded myself to remember this sliver of time when I felt like the king of the world, when I was just one of two candidates who had survived cancer, one of which was the very disease I was raising money to fight and the other a cancer that caused me to walk funny in front of 750 people. I walk proudly.
Man & Woman of the Year candidate Benjamin RubensteinAll 2014 Man of the Year candidates onstsage at Grand Finale Gala
The candidates returned to our seats. I had set a lofty $110,000 goal for our campaign and the cards didn’t fall right. I knew I wasn’t going to win Man of the Year, won by the male candidate who raised the most money, but I had a chance to win one of the three awards. Any candidate could apply by answering short essay questions. Former candidates narrowed the awards down to three candidates, and then current candidates voted for the winners. I applied and made the final round for the Mission Citizenship and Community Involvement Awards.

The Mission Citizenship Award was earned for “exemplary commitment to the mission of LLS throughout the campaign.” I've been committed for a long time. My first visit to a children’s hospital in 2010 was one of my best experiences. I showed young patients that they can become cancer survivors and then they can become thrivers. They taught me to maintain perspective no matter the pace of life or struggles resulting from privilege. I hope I have something special to offer this unique group of people. I will continue sharing my story and trying to inspire people to reach goals and live better, healthier lives for as long as anyone will listen.

I still did not think that I would win. And then the emcee said, “…I read about this cancer-slayer…”

A smile erupted on my face. “It’s me!” I said to those at my table, as if they didn’t already know.
Being named the winner of the Mission Citizenship Award
The presenter finished: “The Mission Citizenship Award goes to the cancer-slayer himself, Ben Rubenstein!” I embraced my family and headed to the stage to accept my award.

Weeks earlier my friend and former candidate, Sweet McG, shared the story of her bookshelf collapsing and every item breaking except for the Mission Citizenship Award she had won in 2010. That award was one of her most meaningful possessions, culmination of her decade of volunteering for LLS following her brother’s passing due to leukemia. Sweet McG and I are committed to this mission for life. In fact, I will continue donating 20% of the sale of my new book to LLS until its official publication this fall.

And now the Mission Citizenship Award is one of my most meaningful possessions.
LLS Mission Citizenship Award presented at Man & Woman of the Year
The Man of the Year raised over $350,000 in part due to wonderful support from his employer, Cisco Systems. The Woman of the Year raised over $250,000, also with incredible support from her company, Ted Britt Ford. As a group of 20 candidates, we smashed the previous $1.1 million record for the National Capital Area by 47%, raising $1.62 million. This Man & Woman of the Year fundraiser has been accelerating in momentum and I expect our record will fall within the next few years. But it feels very special to be part of that.
total money raised at 2014 Leukemia & Lymphoma Society Man & Woman of the Year campaign for the National Capital Area
By the end of the Gala, my CancerSlayer fundraising team raised $48,900, but we finished our mission days later and reached $50,000. We will be linked to a cancer research portfolio of our choosing. Options include pediatric blood cancers and stem cell transplantation, among others. Our team will decide within the next few days.

This fundraiser has been a second job for me. It has led to me feeling poorly about myself and frustration with others. It has also led to closer bonds with friends, family and future family. And now that this incredibly rewarding, top-10 life event is over, I have time to live again. What now? Ladies, I’m ready for your gala invitations.

Leia Mais…

Tuesday, June 17, 2014

I Hope My Friends Forgive Me: What It’s Like to Fundraise

"I'm determined to get $50,000." (my email to JD, June 12, 3:55 p.m.)

"What are you at now? $50k seems VERY improbable by Saturday. Believe me I'm rooting for it, but seems like a long shot." (JD email to me, June 12, 3:58 p.m.)

"We are at $41,000." (my email to JD, June 12, 4:01 p.m.)

"We are up to $43,600. We are going to get $50k. I am going to tell LLS that I promise to pay the remainder if we don't get there at the Grand Finale Gala. No fucking way am I going to get that close and not close it out." (my email to JD, June 13, 10:12 p.m.)

This is the story of how my fundraising team raised $50,000 including $8,000 in less than two-and-a-half days in order to be linked to a $50,000 cancer research portfolio.

*

I received my first email notifying me that someone had donated to my Man of the Year fundraiser. I scrolled down until I saw $100 from Mr. Sunshine, always one of the first friends to support me. Over the coming minutes my phone buzzed several more times: a stranger, friend from my rock-climbing trip, former surgeon, and Orioleski—who I knew from a fashion show we participated in three years ago—all donated. Five minutes, $500.

Checking my phone each of the ~350 times it buzzed with a new donation notification was the most fun part of my days during the 10-week campaign. Some of the donations really touched me, like the $250 from my friend who hardly has much to give, or the $5 from a friend with even less. I quickly understood that fundraising is more about supporting friends and family who dedicate their lives to the cause than the amount of money.

The donation rate slowed as my initial email blast drifted further down inboxes. My desire to be creative prevented me from running an entirely traditional campaign. I made videos and wrote articles. I tied my new book’s pre-publication launch with the fundraiser by donating most of the proceeds from book sales, including at a happy hour that Luz and Republican helped organize.

JD, his fiancé JDiancé, and her family threw a fundraiser party for me. My aunt and uncle donated an insane amount and Aunt Flojo bullied her friends to help. My university supported me, thanks to Luz co-chairing the UVA Club of Washington Book Club. My high school supported me with two bake sales benefiting my fundraiser.

Our shots in the dark didn’t pan out no matter how hard we tried. We learned that a traditional campaign based on letters and emails is the most effective. I wouldn’t change our approach and love that we went for gold, but every free second of my life went to fundraising so removing the long shots would have led to a higher total.

It is hard to wrap my head around how we raised so much money. In mid-May I was afraid that our fundraising team wouldn’t hit the $20,000 incentive for a second guest table at the Grand Finale Gala; weeks later I was afraid we wouldn’t hit the $30,000 incentive for a hotel room at the Ritz-Carlton the night of the Gala. We earned both. That’s when I felt the $50,000 incentive linking our fundraiser to a cancer research portfolio was in reach.

After multiple email blasts and Facebook posts, our networks were nearly tapped. There was no longer any way my fundraising team could reach our original goal of $110,000; there was also no way I would allow us to fail at reaching $50,000. This was my chance to pay forward a tiny bit of what was provided to me when I was getting treatment; to do something really good in the world. It was $50,000 or bust; succeed or always live with regret. I needed to ask people for money directly.

Four years ago while living in Arlington, I had met friends at a bar in D.C. Not wanting to pay my share of a cab ride home, I left early to take the Metro since my employer paid for my Metro card. Trains ran every 24 minutes. When mine arrived, two drunk girls dawdled exiting the train and the doors closed before I could enter. I waited 24 more minutes, and then waited for my bus when the train arrived at Pentagon City Metro Station, and then bussed 23 minutes back to my apartment with the rest of the crazies on the 3 a.m. Metrobus. I wasted almost two hours to save $15.

I’m now nowhere near as frugal, but the thought of telling others how to spend their money made me just as sick.

On Monday, June 9, with a day off work, I brought my computer to Silver Diner and ordered oatmeal and endless coffee, the liquid courage to make my first direct ask. I emailed a friend, “I know I am a dick about this, but it has to be done. If you never give to charity, then no worries and disregard this. If you do sometimes then I really would appreciate your support.” I wanted to cry.

One friend joked I’d gone too far. I didn’t get the joke. “Fundraising is challenging, uncomfortable and awful sometimes,” I wrote him. Over the coming days, asking became a little less nauseating, and far more direct.

On June 12, I wrote my first of three long, heartfelt Facebook posts. “…So much in life is out of our control, but for the challenges that I have influence over, I am determined to triumph…I am determined to reach this [$50,000] milestone with the same ferocity as I had to survive.”

We had raised $39,000.

The next morning: “I am a grinder. At the blackjack table, I always make the mathematically correct play and vary my bets only slightly when the cards count in my favor. I was a grinder on the tennis court in high school, sprinting to every ball, just making sure I hit it over the net—if I could do that every time then I could win. That was until bone cancer stole my hip. I was a grinder in the treatment room every day during the chemo cycle, every month for a new cycle, until I reached 50 chemo sessions in the year and I was done. I was a grinder after my transplant, each day the same thing—bathroom, rest, vomit, sleep—until 65 days later I went home. Which is why I am not afraid to grind through this fundraiser which ends tomorrow evening.”

We had raised $41,700.

After work that afternoon, on Friday, June 13, I unplugged my fully-charged computer and emailed, texted and Facebook messaged as many people as I could until my Dell’s battery died. Some were close friends who hadn’t yet contributed; others I hadn’t spoken to in years. My final message went to The Leukemia & Lymphoma Society’s (LLS) senior campaign manager promising we’d reach $50,000 even if the remainder came from my bank account.

My final Facebook post or message of any kind, on the morning of the Grand Finale Gala, last Saturday, June 14: “I survived cancer twice as a teenager. I will never become a doctor, nurse or surgeon; I will never start a nonprofit benefiting the cancer community. My Man of the Year fundraiser benefiting The Leukemia & Lymphoma Society which ends today is my opportunity to give back…Every time a friend, family member or stranger gives a donation of any amount—even $5—a fire lights inside me and I love you for it. Would you please be my next match?”

We had raised $44,240. I closed my computer lid, showered, and began dressing in my tuxedo for the Grand Finale Gala.

Read about my experience at the Gala here: A Gala, a Trophy, and $50,000 for Cancer Research

Leia Mais…

Sunday, June 8, 2014

My Favorite Neighbor I’ve Never Met

My spine shivered when I heard Drew puking. Unlike my once-a-day vomits that mimicked the Tambora volcanic eruption of 1815, Drew’s were fast, graceful and plentiful. I tracked my “Puke Count” on a whiteboard with tallies. Drew’s Puke Count would require an entire wall.

Drew and I shared a wall because he was my next-door neighbor at the Pediatric Blood and Marrow Transplant Center at the University of Minnesota. That is where I received my umbilical cord stem cell transplant to treat myelodysplasia when I was 19 years old. I never formally met Drew, though I knew much about him by prying my nurses, instructing my dad to “bump into” his mother for updates, and hearing his vomits.

Drew was 14 years old. We had bone marrow transplants around the same time to treat forms of leukemia. He vomited 30 times a day.

We suffered from the exact same post-transplant complications at the exact same times. I developed a lung infection that required me to take a kidney-punishing antifungal drug because we feared I had a pulmonary infection called Aspergillus, which has a 50-70% kill rate. He developed an infection that forced his visitors—including his mother—to dress in full body suits just to see him. I imagined Drew in the medical disaster movie Outbreak, just with a pretty, brown-haired nurse replacing the virologist played by Dustin Hoffman.

When I was discharged after 65 consecutive days in the hospital, my temperature spiked and I had to be re-admitted two days later. Drew had also been discharged the same day, but beat me back to the hospital by a few hours and “stole” my hospital room. I took the adjacent one.

After our room reversal, we each developed hemorrhagic cystitis which caused our bladders to bleed. Now we shared a wall and space between the doors to our respective rooms where nurses stacked five-gallon bags of water, creating our own miniature Mount Tambora. Our nurses would hang the bags from IV poles so the water could enter our bladders through catheters and exit through tubes leading to our showers.

I survived the transplant, Aspergillus and hemorrhagic cystitis. I returned to Minnesota 1.5 years later for a checkup. I visited the transplant center, looking in on the room that Drew and I both once occupied. I timed my visit to make sure my favorite nurse, Biel, was working. For the last time, I pried Biel about Drew.

I am fortunate to be alive and healthy 11 years after my umbilical cord stem cell transplant while many others have lost their fights. I want a world where Drew and I are both alive 11 years later. I can’t bring back Drew, but maybe I can help the next Drew. There are six days left in my Man of the Year fundraising campaign. Please donate any amount, even just $10 which would be 10 more tallies on the imaginary wall that Drew and I still share. Help me raise $50,000 for a research grant specifically for cancer research. My spine just shivered thinking of what we can do together. You can donate here.

Leia Mais…

Wednesday, June 4, 2014

After Cancer, Giving Back

As published on The Huffington Post

Resting anxiously on a retractable bed and about to begin the chemotherapy drug Cytoxan, I sent my mom for a chocolate iced glazed Krispy Kreme donut from the hospital cafeteria. During treatment there were just three times each day when I could eat: immediately upon waking, and before and after the infusion.

Mom returned with an original glazed. I yelled at her: "The chocolate would drown the nickel taste of the infusion, but I don't want this!"

"I'm sorry. That is all they had," she said with her usual patience.

Two hours later with the infusion complete, I asked for small cereal boxes from the heavy shoulder bag Mom lugged everywhere. She dug deep to find them, past the pretzels I sometimes wanted and waters I probably wouldn't but were there "just in case," as she would say. Later, my mom would visit the hospital lobby again to wait an hour at the pharmacy to pick up the thousand-dollar shots I'd receive nightly to boost my white blood cells.

I spent much of my adolescence at the National Institutes of Health (NIH) with my mother while being treated for Ewing's sarcoma, a bone cancer. NIH is the nation's medical research agency with its budget allocated by Congress. The American public paid for my treatment and medication; my parents paid for my donuts.

Treatment consumed my junior year of high school and when I returned for my senior year, my friend, Josh, and I estimated my treatment's total cost. Josh began calling me Million Dollar Man. It never occurred to me to estimate the total hours my mom sacrificed for me, or how many times I fussed. I survived by following a set of rules I created for myself, like "don't complain about treatment," so my agitation which could never be about cancer was instead about donuts. Keep reading, here.

Leia Mais…