Monthly Archives: September 2011

When Cancer Steals–or Postpones–Your Dreams

This past week, the New York Times ran two stories involving young cancer patients. The first mentioned Kevin McDowell, a star triathlete who had to drop out of the running for the world championship because he got diagnosed with Hodgkin’s lymphoma.

In the second story, we learned that Andy Whitfield, the former star of the show, “Spartacus: Blood and Sand” died from non-Hodgkin’s lymphoma. He was 39 years old.

Embedded in both of these stories is a truth that young survivors know all too well: cancer robs you not just of time, but of prized opportunities. Even those of us not destined to be champions or Hollywood stars have lost chances that mattered deeply to us: to go to graduate school, to move away from home, to travel the world uninsured, to have a child, to grow old.

Cancer exacted the highest price it could from Whitfield: it took his life. But even before that, it stole his dream. In early 2010, he was playing the lead in a popular show. Women swooned over his looks, and men wanted to copy his fitness routine. Then his doctor told him he had cancer, and he had to step aside so another actor could take over a revised version of the show.

I never watched Spartacus, but I felt crushed for Whitfield nonetheless. I knew what it was like to have cancer corrupt something precious. I was diagnosed with breast cancer the week before my first child was born. I knew I was lucky to have a healthy baby, but my midwife cautioned me that I would still mourn all the lost expectations I had about my son’s early life.

I had assumed I would breastfeed my baby, but then chemo turned my milk poisonous. I had planned on spending long hours getting to know him, but then second opinions, scans, and checkups ate into my day. I had pictured myself comparing notes with other women at Mommy & Me groups, but then baldness made me feel freakish around new mothers. I had imagined I would be the primary caretaker in my newborn’s life once my husband went back to work, but then treatment forced me to rely on a string of friends and family. And I had expected to enjoy pondering my son’s future, but then my prognosis made me question my presence in it.

Each one of these losses on its own was fine—I understood that feeding my son formula instead of breast milk was part of saving my life. But taken together, the missed opportunities eroded my confidence in myself as a mother. Having my son in my life was an extraordinary, joyful blessing, but I didn’t get to experience his infancy outside of the realm of cancer, treatment, and fear of death.

And that is part of the burden of getting cancer as a young person: you only get to be a new parent once. You only get to be a recent law school grad once, or a newlywed, or a first-time author, or a rising rapper, or a world-class triathlete. None of us expected to have cancer overshadow those experiences. Sure many of us come back from treatment stronger and more determined to realize our dreams. But there is no denying we lost ground in the meantime.

There is never a good time for a diagnosis, but perhaps if it occurs during retirement, you have already savored many of life’s adventures. “It is dying YOUNG that bothers most of us,” one sarcoma survivor wrote on a community message board. “At 24, I don’t even have a boyfriend who will commit. My job is sorting mail. I have accomplished nothing in life of any importance yet.”

This young woman’s dreams lay ahead of her before she got diagnosed. Hopefully, cancer hasn’t robbed them entirely, only postponed them.

Emily Cousins

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it’s like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.

Young Adult Cancer Gets Its Hollywood Closeup: My Review of the film 50/50

Having supported and promoted nearly a dozen advanced screenings of this film, and hearing scores of personal reviews from within our community, I went in with as clear and objective a conscience as possible.

As a young adult cancer survivor and national young adult cancer patient advocate, dozens of scrutinizing questions ran through my head as the opening credits rolled.

Would it be accurate? Would it have the right message? Would it be believable Did it become “Hollywood-ized” over the course of it’s gestation?

And most importantly, would the film live up to the expectation I had for it – to embody what the young adult cancer movement was all about: being your own empowered and irreverent self-advocate and not taking any shit from anyone while struggling to laugh, find joy and make sense of our own seemingly invincible and invulnerable mortality.

The answer is yes to all of these questions.

[SPOILER ALERT REVIEW]

He lives. OK? He lives. Let’s get that right out of the gate. But it’s not the destination, it’s the journey as you will learn all too well.

Right off the bat, this is a magnificent film that will speak very differently and very individually to anyone who sees it. It has more of an indie flick feel to it than anything else. The initial vibe is sort of Eternal Sunshine meets Punch Drunk Love meets Superbad meets House.

Now, I’m no film critic so any attempt I make to discuss the cinematography, lighting, camera angles, etc… would be pointless. But, from a layperson moviegoer’s vantage, it seemed very well done with a high production value.

50/50 is based on the true story of Will Reiser, a young Hollywood screenwriter who was diagnosed out of the blue with spinal sarcoma. In the film, Will’s character is Adam, played by Inception star Joseph Gordon-Levitt. Adam is an archetype young adult cancer patient: isolated, disenfranchised, talked-down-to and grossly underserved. The portrayal of his “fish-out-of-water” experience will hit home with nearly everyone who’s been there and done that.

A couple of lines in the film caught me off guard by how pitch perfectly positioned they were nestled into the plot. One of them involves the moment when Adam discloses to his mother that he was sick. (And Hats off to Anjelica Huston for playing the not-over-the-top Jewish mother. It was the perfect balance of inner strength and emotional devastation.)

“Mom,” he pauses. “Did you ever see Terms of Endearment?”

Of the top ten ways how not to tell your mom you have cancer, this is #1.

Terms of Endearment, which swept the 1984 Oscars with awards for Best Actor, Best Actress, Best Director, Best Screenplay and Best Picture, is a film I use in my speeches as a euphemism for how “not” to portray cancer on the silver screen. Deborah Winger’s character Emma, dies from cancer in the most heart-wrenchingly stomach-churning, “dying-pets-infomercial” way possible.

Adam’s question to his mom is a sardonic nod to the past where perception is still just that; perception. Cancer was not necessarily a death sentence though Adam did have an extremely rare spinal sarcoma. After consulting with an apathetic, pencil-pushing, non-eye-contact-making douche of an oncologist (someone who I know many of us can relate to), he read a similarly austere and unemotional WebMD page that gave him a 50% survival rate for five years.

Another moment that tore my heart out was when Adam’s parents bid him an emotional goodbye in the hospital as he was wheeled into the operating room. This page felt torn directly from my own personal life as I can vividly recall that very same moment as if it were yesterday. I broke down and cried through the entire scene and for several minutes afterward. It was serenely powerful and surreally emblematic of how epically different it is for a young adult having to become dependent on their parents when they just want to live their lives

I know this film is based on Will Reiser’s real life experience but I smelled a little “Hollywood” in there. If I had to nitpick, I would cite three specific “issues” which prevented me from suspending disbelief if only just for a few moments.

First, Adam’s father, had severe Alzheimer’s disease. Was there a plot point to this? Was it to deepen the emotional role of the mother by having a spouse who could not listen and a son who chose not to listen? Does Will Reiser’s actual father face this disease? If not, then I found his character unnecessary as it just contaminated the purity of the scenes in which Adam and his mother ultimately came together towards the end.

Second, the character of Katie, Adam’s assigned pre-doctoral (unlicensed?) therapist played by Anna Kendrick, seemed a little forced. I could be wrong. After all, if in real life, Will went through treatment and came out on the other end dating his younger hottie therapist, then kudos to him for a happy ending. It was my impression that her role, beyond love interest, was to portray how two young people thrown into uncomfortable situations are able to gain comfort and strength through their own sense of courage, confidence and self-worth.

And finally, throughout the course of his aggressively toxic chemotherapy treatments, Adam does not appear to lose any weight. At no point did he give off the impression of being grossly fatigued, gaunt or wan. The makeup crew cue-balled him good but I guess I was expecting more realism in what I’ve seen chemo infusions actually do. Considering he didn’t drive and took a bus to and from his treatments all by himself, one might ponder about neutropenia. Perhaps I’m picking at straws, trying to find something that isn’t there.

True to form, the hospital is the most forgotten and overlooked character in the film. Stoic, emotionless, apathetic, restricting and alienating, it does not foster health and wellness. It manifests darkness, uncertainty and solitude at a time when we need light, hope, peer support and community. There was none.

Whether Will Reiser, Seth Rogen or director Jonathan Levine know the social impact that 50/50 will have on the young adult cancer movement is not irrelevant. It is my hope that they collectively realize what they have done is beyond just making another movie. This is about much more than ticket sales, recouping costs, posting a profile, pleasing shareholders and padding a portfolio.

In the end, you will cry. You will laugh and, hopefully, you will get many of the random 1980s movie references. What I can guarantee is that you will be made to feel egregiously uncomfortable by most of Seth Rogen’s trademark and token inappropriateness, a la Pineapple Express and Knocked Up.

Seth is Will’s best friend in real life so he is, essentially, portraying a version of himself in this film. I’m a Rogen fan but if any of my friends tried to use my brain cancer to get themselves laid, I’d have run them off a cliff.

Sorry, Seth. I actually am a huge fan.

You get props for having the balls to help make this film a real boy.

Mazel Tov!

Matthew Zachary is a 15-year young adult survivor of pediatric brain cancer, national young adult patient spokesperson and the Founder/CEO of the I’m Too Young For This! Cancer Foundation, online at http://StupidCancer.com

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

My Date With The Film 50/50, The Preamble

Wednesday, August 31st, 2011, 10:30am.

My office receives a call from my friend and colleague Kathleen Lobb, Co-Founder of StandUp2Cancer and Vice President at the Entertainment Industry Foundation. She asked me what I’m doing at 1:30pm that afternoon.

“No plans,” I replied.

“How would you like to join Katie Couric and I for a private screening of 50/50?”

(Katie Couric lost her husband to colon cancer at the age of 42. She is the Co-Founder of the National Colorectal Cancer Research Alliance, which is an initiative of the Entertainment Industry Foundation)

An hour later, I arrived at the screening room, meet up with Kathleen and Katie and prepared myself to watch a film that I have been aware of since 2008 when I first received one of the original screenplays.

That’s right, I’ve been privy to this project for nearly three years now and have been privileged to watch it germinate and develop into a feature film.

Having supported and promoted nearly a dozen advanced screenings of this film, and hearing scores of personal reviews from within our community, I went in with as clear and objective a conscience as possible.

As a national patient advocate, dozens of questions ran through my head as the opening credits rolled. Would it be accurate? Would it have the right message? Would it be believable? Did it become “Hollywood-ized” over the course of it’s gestation? And most importantly, would the film live up to the expectation I had for it – to embody what the young adult cancer movement was all about: being your own empowered and irreverent self-advocate and not taking any shit from anyone while struggling to find joy and make sense of our own seemingly invincible and invulnerable mortality.

The answer is yes to all of these questions.

[note] I am awaiting approval from the studio to publish my actual review in compliance with their embargo policies. Stay tuned, true believers…

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

[PRESS RELEASE] Stupid Cancer Show Voted A Top 10 Finalist In Most Innovative Use Of Social Media For 3rd Annual Classy Awards

THE STUPID CANCER SHOW VOTED A TOP 10 FINALIST IN MOST INNOVATIVE USE OF SOCIAL MEDIA FOR 3rd ANNUAL CLASSY AWARDS
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StayClassy and Sponsors Offer More Than $150,000 to CLASSY Award Winners

NEW YORK, NY, August 1, 2011 – StayClassy, a leader in social fundraising for nonprofits, has announced that public voting has chosen I’m Too Young For This! Cancer Foundation’s The Stupid Cancer Show as one of the 3rd Annual CLASSY Awards Top 10 Finalists for Most Innovative Use Of Social Media.

The CLASSY Awards is the largest philanthropic awards ceremony in the country, recognizing the most outstanding philanthropic achievements by charities, businesses and individuals nationwide. From July 25 to August 26, voting was opened to the public to determine the Top 10 Finalists. With more than 2,000 nominations submitted to StayClassy for consideration, The Stupid Cancer Show has been through a long process to make it to the final round.

A program of The I’m Too Young For This! Cancer Foundation, The Stupid Cancer Show is an award-winning international talk radio webcast giving voice to a lost generation of cancer survivors by tackling hard-hitting issues from politics, health care and the environment to social media, entertainment and education.

A combination of public votes and a decision by a panel of industry professionals will determine whether The Stupid Cancer Show will be a CLASSY Award Winner for Most Innovative Use Of Social Media. The winners will be recognized live on-stage at the CLASSY Awards ceremony in San Diego on September 17th, in which $150,000 in cash and prizes will be donated to support the causes of the 12 National CLASSY Awards Winners.

“Cancer talk radio has indeed changed the world. Four years, 200 broadcasts and 1.5M aggregate listeners worldwide can’t be wrong,” said Matthew Zachary, a 15-year pediatric brain cancer survivor, co-host and co-producer of The Stupid Cancer Show and Founder/CEO of the I’m Too Young For This! Cancer Foundation. “It is an honor to be recognized for our social entrepreneurship in the name of the more than 70,000 young adults diagnosed with cancer each year.”

A Charitable Event to Remember
Tickets are now available for the 3rd Annual CLASSY Awards ceremony on Saturday, September 17 in San Diego, California. Those that want to support The Stupid Cancer Show and The I’m Too Young For This! Cancer Foundation and attend the event can purchase tickets by visiting www.classyawards.org. General admission tickets start at $50 and gain you entry into the CLASSY Collaborative, Ceremony and After-Party.

The CLASSY Collaborative, a day-long networking event, will be held on Friday, September 16 at the W Hotel San Diego. Participants will have the opportunity to meet, mingle and share ideas with some of the foremost leaders in philanthropy, technology, innovation and entertainment.

Speakers at the ceremony will include, Adam Garone, CEO and Co-Founder of Movember, Tabreez Verjee, President and Director, Betawave, Premal Shah, President of Kiva.org, Jake Woods, Co-Founder of Team Rubicon, Ben Keesey, CEO of InvisibleChildren, Chris Carver, COO of Invisible Children, Yael Cohen, founder of F Cancer, William McNulty, founder of Team Rubicon, Alex Bard, founder of Assistly, Jeff Rosenthal, founder of Summit Series, Barrington Irving, founder of Experience Aviation, Natalie Spilger, founder of Green Laces, Josh Warren, Resource Development Director of The DREAM Program, Inc., Scott and Gina Keatley, co-founders of Nourishing NYC, and Dan Novak, VP Global Marketing, PR & Communications of Qualcomm. CLASSY Awards partners include: Southwest Airlines, Qualcomm, Bridgepoint Education, NBC Local Media, PayPal, Huffington Post Impact, NexGen Charity, The Chronicle of Philanthropy, Guidestar.org, Legalzoom, HandsOn Network, Young Nonprofit Professionals Network. For additional information on the competition, event details, and to make your nominations, please visit www.classyawards.org or email.

About The I’m Too Young For This! Cancer Foundation
The I’m Too Young For This! Cancer Foundation (http://stupidcancer.com) is the nation’s largest support community for the next generation of patients, survivors and caregivers between 15-40. Our mission is to empower young adults affected by cancer. A TIME Magazine Best 50 website and FOX News Top 10 Healthcare Blog, we support a global following and hundreds of thousands of friends, fans, readers, listeners and members. Since our launch in 2007, we have helped bring the cause of ‘cancer under 40′ to the national spotlight and rallied a brand new crop of activists to give a much needed voice to our forgotten population. Visit http://stupidcancer.com for more information.

About StayClassy.org
StayClassy (http://www.stayclassy.org) is the easiest and most affordable way for organizations to raise funds and manage donor relationships online. Based in San Diego, CA, the company develops easy-to-use web-based fundraising software for nonprofit organizations. StayClassy launched its new platform in May 2010, and has over 2,000 customers using its services. It’s free to sign up, making it extremely attractive to small and medium sized organizations on a tight budget. StayClassy is also the host of the Annual CLASSY Awards, a national award show that recognizes outstanding philanthropic achievements throughout the world (http://www.stayclassy.org/classy-awards).

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Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

Scars from Cancer Surgery: Painful Reminder or Badge of Honor?

While it is always hard to say goodbye to summer, many cancer survivors will welcome the end of summertime beachwear. Bikinis and board shorts lay bare the surgical scars we keep covered the rest of the year.

“When I go to the beach, I look like Frankenstein,” Dave Callahan told me. Dave had testicular cancer, and his first surgery required an incision from his pelvis to his sternum. A year later, a tumor appeared in his lungs, and he had to have his sternum cut open and spread apart. He now has about 24 inches of scar tissue lining his torso.

“I am self conscious about it because it reminds other people I had cancer. Even my parents. We could be having a normal family weekend, then we go to the beach and I take off my shirt, and it makes them think about me being sick. I went to a bachelor party at the beach. I didn’t want people to think: ‘Poor Dan, he had cancer.’ I just wanted to be one of the guys hanging out. I was able to drink enough beer to get past it.”

Surgery is a central part of cancer treatment. Whether it’s a small opening for a chemo port or the equivalent of an open-heart procedure, most of us have been under the knife. And now we have bumpy, knotty scar tissue to remind us of our battlefield experience for the rest of our days.

“I am marked for life,” one young survivor of ovarian cancer told me. “I have 12 inches of train track up my stomach. I see it every day, and it reminds me what I went through. Not that I would be a bikini woman, but there are definitely things I can’t wear anymore.”

I have three scars from my lumpectomy and node dissection. One of them is visible in the season of bathing suits and spaghetti straps. In the aftermath of treatment, I worked hard to hide the scar because I didn’t want to invite questions. I didn’t mind talking about my cancer experience, but I wanted to do it on my terms.

Scars take away that option. They betray information we may prefer to keep private.

One guy I spoke to got diagnosed with colon cancer a few years after college. Because several members of his family died of the disease, he decided to have his entire colon removed. Now he has a scar running from his rib cage to his pelvis, and he hates the curiosity it attracts.

“I go to the gym all the time, but I still don’t like taking my shirt off in front of other people, which you know, stinks. It’s not that I mind what it looks like. I just don’t want people knowing something personal of mine. I want to have the choice to tell people or not. I don’t want them to be able to find out on their own.”

Even if our scars stay with us forever, our feelings about them can change. These days I don’t mind if people ask me about my incisions, because I feel less vulnerable about my prognosis. I can talk about my cancer diagnosis without being swamped by fear now.

Several survivors I spoke to said that their scars transitioned from being a painful reminder of treatment into a badge of courage.

“I love my scars,” Haley Coakley told me. Haley got diagnosed with cervical cancer when she was pregnant with her second child. “At first I was like, ‘Do I have to have these scars?’ Now it they are like my war tattoos—my very expensive war tattoos. They show I made it through, and I am still going strong. They are my accomplishments.”

Ironically, sometimes it can take another person’s gaze to help us see our scars as a thing of honor. Denny Tu, who went through treatment for nasal cancer in his late twenties, has scars on his neck, arm, and abdomen. At first he felt uncomfortable about them, but then he hooked up with a guy who made him view his scars differently. “This guy wasn’t judging the scars. He was admiring them. We lose our sense of how heroic we are. Yeah, I survived the worst thing ever.”

No matter how much vitamin E ointment we use, these battlefield medals will be with us for the rest of our lives. Whether we keep them covered up or reveal them for all to see, we have won the right to wear them proudly.

Emily Cousins

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it’s like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.

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