Saturday, July 30, 2011

The Two-Time Cancer-Slaying Super Model: Part II

Read this first:
The Two-Time Cancer-Slaying Super Model: Part I


Let’s say there is a particular female I am fond of. Probability says the same fondness is not mutual. But let’s presume it is. If said female were to happen to read the following, then her fondness of me would most likely diminish or cease. Based on the probability that she would be fond of me, as well as the probability that she would actually read the following, I’m sure there’s a calculation to be made as to whether or not I should publish it. But this is something I need to say, so screw it, here goes…

Super Model

I learned unimaginable statistics at the Second George Washington Cancer Institute Biennial Cancer Survivorship Research Symposium that I attended in May. The following comes from the Childhood Cancer Survivor Study which began in 1994 and includes over 20,000 childhood cancer survivors:
  • There are 325,000 survivors of childhood cancer in the US (1/640 young adults aged 20-39) and less than half are receiving cancer-related follow-up care
  • 20% of childhood survivors smoke
  • 25% of childhood survivors binge drink
  • 65% of childhood survivors are physically inactive.
Those stats are peanuts compared to this: survivors of one childhood cancer are 11 times more likely to die than the normal population. The most common causes of death are cancer recurrence, secondary malignancy, and cardiac disease. The diagnoses most at risk are brain tumor, Hodgkin’s lymphoma, and sarcoma. Check mark for me. The treatment exposure groups highest at risk are bone marrow transplant and radiation. Two more check marks for me.

It is possible that level of mortality is found elsewhere—like certain professions such as fishers or (just guessing) well-exceeded within the gay male community—but here is the difference: if fishermen stop fishing or if gay men stop having gay sex then their actuary life tables normalize. Pediatric cancer survivors can’t simply stop being survivors. Don’t even ask about survivors of two childhood cancers, as I doubt that research exists. You’re more likely to find someone who has had two childhood makeout sessions with Natalie Portman and Mila Kunis.

So is there anything we can do to rise above our actuarial life tables? I for one am not going to sit around waiting for that research to occur. 3.5 years ago I chose to give my lifestyle a makeover, which I’ve documented in this blog.

And so when I learned of those stats back in May at George Washington University I knew what I wanted to do in life: to be an advocate for life after cancer, to lead the way, to show that we can not only survive the disease and unthinkable treatments, but to thrive. We can choose to make the very best with what we have, to perfect what we can and stop worrying about the rest, and to face our unique challenges head-on. We may have to study/work/train/push/lift/run/cycle/try harder, but we’ve been through worse, and although none of us chose cancer, we can now choose to thrive.

Unfortunately, my desire to be the face of healthy survivorship for my generation will be contingent on me becoming famous, which I am not, and probability says I won’t be. But just in case, I’m going to train like a maniac to show that a two-time pediatric cancer survivor can annihilate most people in a contest of relative strength, and least body fat, and most muscular striations*. If you’re reading this and you’re a young survivor like me, then join me. I will be documenting my training and visual progress on Twitter @benrubenstein.

*Also, simply put, I’m a vain motherfucker.


“I’m disappointed in you,” my friend said to me. “I feel like you need to get your feet wet. You’re not living life to the fullest.”

It was five years ago that my good friend, Big Easy, shared these thoughts with me. We had been drinking and playing poker. He had also been dipping, smoking, and snorting narcotics. His disappointment in me was not directed at my lack of participation in drugs per se, but rather at me not engaging in a variety of activities that he and our other college friends were.

Comments like Big Easy’s used to affect me. I was torn between living a “normal” lifestyle and a healthy one. I’m no longer torn. Bone cancer, leukemia, Adriamycin, Cytoxan, fludarabine, vincristine, etoposide, ifosfomide, hip removal, an umbilical cord stem cell transplant, total body irradiation, pulmonary fungal pneumonia, osteoporosis, graft versus host disease, thalassemia trait, needles, MRI machines, x-rays, CT scans, bone scans, low left ventricle ejection fractions, low hemoglobin, high ferritin—all these things are not going to decide the quantity of my life. I won’t let them. Or, at least I will die trying.

Leia Mais…

Tuesday, July 26, 2011

Passed Away Resulting from Cancer: Poh Nikbar July

Paul Newman

Winning 37 awards—including an Oscar for Best Actor in a Leading Role—and being nominated for an additional 47, it is surprising that I’ve only seen three of Paul Newman’s films: Cool Hand Luke, The Color of Money, and Road to Perdition. His role in Cool Hand Luke was marvelous, earning him recognition for playing one of the best movie characters ever.

On the other hand I have consumed lots of his salad dressing. When I first saw his mug on the plastic container for balsamic vinaigrette I figured he was a long lost relative of Uncle Ben and Aunt Jemima. Newman cofounded the Newman’s Own line of products in 1982, with all post-tax proceeds donated to charity, totaling over $300 million. As if that philanthropy wasn’t enough, he also cofounded The Hole in the Wall Gang Camp in 1988, in Ashford, Connecticut.

The camp provides a unique experience to thousands of seriously-ill children, free of charge. When I was a cancer patient at age 16, I was gravely opposed to participating with other Cancer People in any way, including a similar camp experience offered to me. But after going on Birthright Israel (and next year I hope to go on a rock-climbing trip for cancer survivors provided by First Descents), I now see how fantastic The Hole in the Wall Gang Camp can be for young, ill people.

Father Dom of The Whole in the Wall Gang Camp holding memoir "Twice"
I have a friend, 3Ball, who I met through blogging—a fellow Cancer Person. He visited The Hole in the Wall Gang Camp last week to see a lifetime friend of his who volunteers at the camp, Father Dom. 3Ball gave Father Dom my book. Father Dom enjoyed my book, telling 3Ball something along the lines of, “I could not put it down until page 118.”
I am confident that Paul Newman would have felt similarly about my book. But in June 2008 it was reported that Newman had been diagnosed with lung cancer, and he passed away a few months later at age 83.

In Cool Hand Luke, Newman said, “Sometimes nothing can be a real cool hand.” He was referring to poker, but maybe he was also hinting at holding onto fewer possessions and giving more. Despite his passing, Newman’s Own and The Hole in the Wall Gang Camp continue on.
Paul Newman passed away from cancer

Leia Mais…

Wednesday, July 20, 2011

Super Powers

First published in the Summer 2011 issue of "The University of Virginia Magazine"

Lightning flickered inside my hip. Every time my left Adidas landed on the ground, I felt another fiery explosion. The pain left just as quickly as it came, leaving me waiting for another blaze.

I was a sophomore in high school in Northern Virginia, playing a singles match to determine seeding for the tennis team. That was the first time I felt the pain, and I pushed it aside because I wanted to play. The pain worsened over the ensuing months.

Eventually, I was diagnosed with Ewing’s sarcoma, a rare form of bone cancer, and received a year of treatment, including chemotherapy, radiation and surgery that prevented me from ever playing tennis again. I was simply a normal teenager who happened to receive toxic chemicals, energy waves, blood transfusions and needle pricks. I wouldn’t allow cancer to change me.

My rules—don’t cry, don’t complain, don’t talk about cancer and don’t fear death.

When I became cancer-free, I rejoined my senior class and graduated, without acknowledging I was ever ill—except taking the handicap spot so I could exit the high school parking lot first in the afternoon en route to Taco Bell.

During my first year at U.Va. in 2002, I told only a few hallmates about my cancer, and only after they inquired about my 15-inch scar.

My hallmates would all become aware, though, because during winter break I discovered that my bone marrow was dying as a result of the very drugs that saved my life 16 months earlier. U.Va. would await my return, Dean William Wilson said, when I handed him my student ID.

What would have been my second semester was instead the beginning of a pitched battle against cancer. I remember the X-ray technician who talked with me about the Redskins, the loud hammering of the MRI machine and the other patients pushing their IV poles. At the hospital, there were children with cancer. “They’re just kids,” I thought.

When my oncologist saw me eating slices from Pizza Hut and watching episodes of Seinfeld, he said, “Too bad I have to work, because I would love to join you right now.”

Later, he showed me admiration for exercising while anemic. “But why?” I asked. I could barely pedal up a hill, and when I did, I had to get off my bike and lie on the asphalt.

It felt important to be tough. We all poked fun at an older patient for sweating before getting his blood drawn. A friend used the word “cheemy” to make the poison sound more appealing. I had to be pushed in a wheelchair during my first couple of cycles after surgery. Could anyone be worse than my mom at pushing this contraption?

It was hard to be tough. My heart broke when I saw my roommate from Cycle 14 getting treatment long after he was supposed to have finished. Did his cancer return? I remembered friends and family visiting me and sitting around my bed in a circle, all staring. I felt so pathetic. I wanted to get up and walk around the room to show them that I could. But I couldn’t.

One year and one umbilical cord stem cell transplant later, Dean Wilson welcomed me back to U.Va. I still do not complain. I generally don’t fear death, barring the occasional suicidal thought after watching the rivalry football game with my Virginia Tech friends and brother. However, I do acknowledge that cancer has provided me a new way to view the world. It may be human nature to take things for granted, but I never want to. I may get a tattoo of my tumor to remind me.

Leia Mais…

Tuesday, July 19, 2011

Making The Best With What You Have

First published in "Stupid Cancer Blog" on July 14, 2011

“You have bone cancer in your pelvis” was less foreboding than my first school dance, where a bigger girl tried “the helicopter” on me: she picked me up and spun me around her head. Though far too shy to make moves, I was a desirable sixteen year old. I had long corkscrew curls (my He-Bro), my own car (a red Chevy Cavalier straight out of Swingers), and a dresser full of single-, double-, and triple-hand-me-downs.

Then I was diagnosed with cancer and my left hip was removed, leaving me with a scar wrapping around half my waist and causing me some really uncomfortable rehab sessions at the pool. Children glared at my thick purple incision as I relearned how to walk. But by a year later, embarrassment was replaced with pride as I strolled shirtless through my University of Virginia dorm. Most hallmates looked away politely. Nobody glared.

After graduating in 2007, I strove for the elusive 8% body fat following too many Ryan Reynolds and Will Smith Netflix rentals. I quickly found that my 15-inch scar could be a tool more useful than any body fat caliber or scale. Without a hip bone, my scar region had acted as a pocket for excess skin and fat accumulation. But as I slimmed, the region regained muscular tightness and lost its curves. I was wearing my fitness success like a scar.

Summer is here. Twenty-somethings are whipping into shape and buying hot new swimsuits, bikinis, and the occasional banana hammock. Me? I have slimmed down once again to flaunt the scar that once needed 50 staples to close. Since I am short, pale, have one leg 2.5 inches longer than the other, and carry the wounds of surviving cancer twice, I am disqualified from being a lady killer. However, I advocate making the best with what you have, and changing what you can to better yourself. Unwilling to wear height lifts or track down A-Rod’s “doctor,” I will use my unique body fat tool to attain a worthy beach body with one addition–my now whitish scar.

Leia Mais…

Monday, July 18, 2011

ruBENstein Media: Part III of III

Read these first:
ruBENstein Media: Part I of III
ruBENstein Media: Part II of III

My epiphany clobbered me on the way to Charlottesville to visit friends during the July 4 weekend: I will quit my job with a solid consulting company which I am successful at having just received a promotion, project change, and selection into the PMP training program; move back in with my parents to save rent money; and work on publicity for my book and public speaking for 90 hours per week for one year. After one year, if my efforts are not successful, then I will let go of TWICE.

Friends have since talked sense into me. Ol’ Brit said that money always goes further than time, and suggested I keep my job and spend money on publicity. This would keep me on my career path and leave me with more money, anyway ((income – spending) > (no income + no spending)). La Mole pointed me to The 4-Hour Workweek and thought I should outsource my publicity.

Bingo. I will hire a publicist. Someone inexpensive, like a college intern. Or a virtual assistant from India. And I will hire someone to develop a book trailer that excites and inspires even more than the trailer for the upcoming Pitt movie, Moneyball. I will be studying publicity and looking into this process over the coming weeks.

In the meantime, I am giving away my e-book for free. Just follow these simple steps:
  1. Click the following link to visit my book on Smashwords:
  2. Click “Add to Cart” in the top right
  3. Add the following coupon code: FS38W
  4. Click Update
  5. Checkout
  6. Now you own my book, TWICE, for free.

Please share that coupon code with someone, anyone, everyone. I also encourage you to become my Facebook Fan. Your publicity ideas are always welcome, except please don’t tell me to send TWICE to Oprah—I hear that suggestion more often than I sell books. But hey, at the very least she could become my Facebook Fan, right?

Leia Mais…

Sunday, July 17, 2011

ruBENstein Media: Part II of III

Read this first:
ruBENstein Media: Part I of III

I have been busy this spring and summer trying to get more Facebook Fans...

See my live May 5 morning news interview on WFMZ 69 in Allentown, PA, with Eve Tannery. Normally I spend hours pursuing publicity opportunities that lead to me being ignored. But Eve actually targeted me directly for an interview. Eve was professional, excellent at her job, and a knockout human being. Whether she wishes to remain a local news anchor or become the next Katie Couric, I wish her the best of luck.

Read the May 7 column by Paul Driessen about the inspiration my book provided to his daughter, Amy, who was battling cancer. I spent time with them at my clinic. 16-year-old Ben would not have interacted with Cancer People. But 27-year-old Ben does. People like Paul and Amy remind me why.

Read the “Super Powers” article I wrote for the Summer 2011 issue of University of Virginia Magazine. The article’s ending used to be much better before it was edited, and involved me getting a tattoo of Cavman (UVA’s mascot) impaling a Hokie (Virginia Tech’s mascot).

Hear my “Stupid Cancer Show” radio interview from Memorial Day (scroll to the 15 minute 30 second mark).

Listen to internet radio with Stupid Cancer Show on Blog Talk Radio

Hear my July 2 “Majestic Mo’Mints” radio interview on Fairfax Public Access.

Read my July 14 article "Making The Best With What You Have" in Stupid Cancer Blog.

No matter my desire, time commitment or publicity successes, my hardcover and $3.99 e-book barely sell. I do not know how to sell books. I do not understand the disconnect between getting the word out and visible outcomes. I do not know how to get more Facebook Fans.

Keep reading:
ruBENstein Media: Part III of III

Leia Mais…

Saturday, July 16, 2011

ruBENstein Media: Part I of III

Self-promotion is required to sell books. I Tweet silly uselessness. My primary duty for my Facebook Fan Page is, well, to get more Fans. My blog stories are attempts at humor, genuine life experiences, a combination of the two, or attempts to get more Facebook Fans. Did I mention I could use more Facebook Fans?

When TWICE published, I bought custom bookmarks and business cards. My first printed material from was amateur, lacking any mention of my Facebook Fan Page.

I remedied that by using to print 500 of these beautiful babies below. Notice my Facebook Fan Page URL. My next printing may contain a QR code leading directly there.

My self-promotion reaches further. I sent email blasts telling people about my hardcover as well as my e-book. I hounded friends with text messages. “Ben, I love you like a brother, but stop telling me to buy your book,” one friend replied.

“Do you honestly want to know why I won’t buy your book?” another friend, Duckman, asked. “When you told me you were writing it, I asked you which would hypothetically take priority if you could only do one: get your book published, or save my life. You said ‘publish my book.’ If my life is worth that little to you then I’m never going to support you here.”

I used to try not to let Duckman and others bother me (it took my grandmother’s scolding before my aunt bought it; doctors who are in the book refused to buy it; numerous extended family still have not bought it or acknowledged its existence). It is not my place to tell others what to do with their time or how to spend their money, I thought.

And then I removed my cape. If the situation was reversed, I would support my friend or family without hesitation. If I was actually a character in a published book then of course I’d want to own a copy.

And then there’s Duckman. His odd, hypothetical question lead to my mocking response, claiming that I’d rather let him die if it meant getting my book published. Of course it was untrue, just as that scenario would never happen.

Duckman had been as excited as anyone when I told him I was writing a book. He had made me proud of my writing project, and happy to have finally spread the word instead of continuing to keep it a secret. But that was before his hypothetical question. Duckman is a bitter, spiteful individual, and so loyal that I’m sure he’ll stick to his guns and never read my book. What he—and others—doesn’t realize is TWICE is not just my book that I spent one-quarter of my life writing and trying to get published: sacrificing internships, grades, friends, jobs, activities, social gatherings, parties and clubs. TWICE is not just the most important thing I’ll ever produce. TWICE is not just the entity that I love more than anything in the world except for four to five people. TWICE is me; there is very little else I have to offer. So fuck Duckman. Life is too precious arguing the value of my life in writing. If he suddenly chooses to read it then I’ll be grateful. But I’ll never ask him again.

Keep reading:
ruBENstein Media: Part II of III

Leia Mais…

Saturday, July 9, 2011

Arlington Update: Coke Zero

My friend, Headquarters, jokes that I had the worst diet in college: Bagel Bites, Pizza Rolls, cupcakes, Goldfish, chips, pretzels, Hot Pockets, frozen pizza, fruit snacks: plastic, cardboard, preservatives, fat, cholesterol, processed, delicious.

That has changed. I contend that I now have the healthiest diet in the country. The most processed food I keep in my apartment is granola bars, followed by Craisins. I used to eat Cheerios, but no longer—plain Shredded Wheat is less processed, with Whole Wheat being the only ingredient.

My only snacks include: dried fruit, raw nuts, and several pounds of fresh fruit each day.

Common meals include: plain oatmeal prepared on the stove, with added Cinnamon and frozen berries. Almond butter and preservative-free jelly on whole wheat. Chicken cooked in olive oil with non-instant long-grain brown rice.

And my staple meal: a salad with at least seven different raw vegetables; two raw seeds; two raw nuts; a vinegar-based dressing without high-fructose corn syrup; and pinto beans, organic egg whites, or organic chicken with curry, coriander, or a different raw herb. It takes at least 20 minutes to prepare and even longer to eat.

Huge salad with vegetables, seeds, nuts and beans

If you don’t know already, then I’ll explain the reason why I’m a health food super duper wackjob in the upcoming story, The Two-Time Cancer-Slaying Super Model: Part II. But before you kneel before me, kiss my pinky toe and lick my armpit (or something like that), let me disclose my only two vices: the occasional brewdog, and the frequent Coke Zero.

Coke Freestyle machineTwo weeks ago I drank a Double Big Gulp of Coke Zero—a solid half-gallon—two days in a row. My friend, Mattkind, told me about Coke Freestyle—a Redbox-like Coke kiosk that may be sexier than the giant blue chick from Avatar.

I share Coke Zero’s awesomeness with so many friends, colleagues and readers that I should be a paid consultant—or at least receive free Coke Zeros. I love their taste and lack of calories. But truth be told, I believe they are unhealthy and wonder if they are cancer-causing. I have tried to stop drinking them—for instance, I refuse to store them in my apartment. But they are plentiful at my parents’ house, at work, and now at restaurants, and I may soon quit trying to give them up. I had the willpower to eat 1,500 calories a day for 1.5 years, but I can’t refrain from the acid.

I hope my general healthy lifestyle more than counteracts the soda. Even more so, I hope I don’t start dipping my Shredded Wheat biscuits in Coke Zero or use it as salad dressing. When I begin excreting brown liquid from any orifice then I’ll consider it a problem.

Leia Mais…