young adults

Why I Am Going To OMG2013…

Why I Am Going To OMG2013…

By Guest Blogger Scott Slater

 

I’ve been asked to write this blog to explain my reasons for attending The 6th Annual OMG! Cancer Summit for Young Adults this April 25th-28th in Las Vegas. As I sit down to write, I realize this is a daunting task indeed, because I have many, many reasons. But first, a little history; I am a testicular cancer survivor. My cancer journey began over six years ago in the summer of 2006, when I found a lump mere centimeters across that would change my life forever.

 

Those of you who have experienced the joys of cancer treatment–or who are currently experiencing the joys of cancer treatment–already know this part of the story all too well. The months that followed were a whirlwind of doctors, waiting rooms, tests, procedures, surgeries, needles, radiation treatments, nausea, anxiety, stress, you name it. But this blog isn’t about all that, it’s about what happened after the whirlwind was over.

 

On October 13, 2006, I showed up for my last round of radiation, after a total of five and a half weeks of glow-in-the-dark fun. Everyone at the clinic was all smiles: “Congratulations! You’re done!” Although I certainly shared in their enthusiasm–believe me, no one was happier than I was that I no longer had to subject myself to that anymore–I left the clinic that day feeling, well, not quite “done.” What would happen now? There were years of CT scans and other checkups in my future, to be sure, but how could I return to my “normal” life after all of that? Why did I feel like I wasn’t connecting to some of my friends the way I used to? Why was I getting so many blank stares when I tried to talk about what I had been through?

 

I began to look online for support groups. I felt a burning need to talk about what I had just experienced with other people who “got it”–people who knew first hand what I had been through. I found a cancer survivor support group for men at Sloan Kettering in New York and made arrangements to attend. I arrived to find a group of 14 prostate cancer survivors in their 50s through 70s. And though this was a bit unexpected, I decided that the opportunity to talk to a group of people who could understand where I was coming from would still be a valuable experience.

 

Except that they couldn’t. Not really, anyway. It became clear to me that the ways in which I had been affected by cancer, as well as my concerns while going through the whole ordeal, were quite different than theirs. I wanted to talk about how this was going to affect dating. What it would mean for my sex life. What it would do to my fertility. And what it would mean for my life 20, 30, 40 years down the road. This was not the world these other men were inhabiting. I wanted to curse, and rage, and use lewd jokes as a coping mechanism. (I quickly learned that they didn’t.) I knew that I needed to find people like me, and it was early in 2007 that I saw a flyer for a group called “I’m Too Young For This!”, specializing in advocacy and awareness for young adults affected by cancer. It sounded perfect–and it was. For the first time I was able to meet with, talk to, and most importantly befriend other young adults who truly “got it.”

 

In 2008 I attended a one-day conference co-sponsored by I’m Too Young For This! and The Leukemia & Lymphoma Society, called “OMG! A Cancer Conference for Young Adults.” It was incredible event, not only because of the informative panels, but for the amazing opportunity to meet nearly a hundred young adult cancer survivors all at once. That conference was five years ago, and my how we’ve all changed: “I’m Too Young For This!” is now known simply as “Stupid Cancer”. I’ve run smack-dab into that brick wall known as “turning forty.” OMG has evolved as well, taking place every year since then, and I’ve been to every single one. I’ve watched it go from a one-day conference with 100 attendees held in New York, to a three-day event with over 500 attendees in Las Vegas last year. This year OMG will be a four-day event with even more survivors, caregivers, doctors, specialists and professionals in attendance.

 

So why do I keep going back? For the first year or so of my survivorship, I refused to use the phrase “cancer survivor.” Why, I thought, would I ever want to define myself by an event which was by far the worst thing I had ever endured? No, I was fully content to leave cancer behind forever. But Stupid Cancer, and in particular the OMG Summits, taught me two important things: 1. I will in all likelihood never be “done” with cancer. It is part of who I am now; and 2. The young adult cancer survivors I’ve met are some of the most amazing, genuine, kick-ass people I have ever known. There is absolutely nothing like spending a weekend in Las Vegas with hundreds of brave, determined, real, inspiring, and–let’s face it–crazy, fun souls. You might think OMG is a weekend spent thinking about and discussing cancer. For the most part, the panels and workshops are that, to be sure. But at the clubs, or at the pool, or at dinner, or in the lobby, there’s an unwritten bond where you can simply say, “Hey, you’ve been through that too. Let’s talk about ‘Breaking Bad’ instead.”

 

With each passing OMG I have attended, I am humbled at how much there still is to learn. How much there still is to experience. How much I still need to grieve about cancer. How much I still need to laugh about it. And how much I need to get really, really angry at it. This was never more true than last year. I can’t piece together any eloquent way to put it, so I’ll just say this: OMG2012 was nothing short of a cathartic shitshow of emotions–laughter, tears, sadness, anger, you name it. I hugged dear friends I had met at previous OMG Summits, and I met new friends I can’t wait to see again this year. With each year I get more excited at how I can give back to the people who are just starting their journey. Maybe that’s just me moving into “elder statesman” mode at the ripe old age of 41.

 

To be honest, words can’t really describe what OMG has meant to me over the years. If you haven’t already, you’ll have to experience it for yourself. I can tell you it’s been invaluable to me. Of course, I’d also be remiss if I didn’t mention that there are worse places to spend a weekend in April than Las Vegas. It certainly didn’t suck to lounge out by the pool during a break, or to party on a balcony on the top floor nightclub of the Palms Casino with a panoramic view of all of Las Vegas. I could go on, but well, you know–What happens in Vegas stays in Vegas.

 

What happens at OMG, on the other hand, stays with me forever.

 

Young adult testicular cancer survivor Scott Slater is an Independent Marketing Consultant at Ambit Energy as well as a singer/songwriter and producer for Michelle Hotaling. They released our their CD “Chained By Dreams” in December 2006, and it is available at http://www.cdbaby.com/cd/hotaling. For more information, visit Scott’s LinkedIn page at http://www.linkedin.com/in/slaterama.

“This Is What It Means to Be Alive:” Feeling Thankful after Cancer

“This Is What It Means to Be Alive:” Feeling Thankful after Cancer

Thanksgiving is an easy holiday for cancer survivors: we have gratitude coming out of our ears. We don’t need Pilgrim hats and Wampanoag feathers to remind us how fortunate we are. Our encounter with cancer made it clear we are lucky to be alive. We feel grateful every day.

That doesn’t mean we don’t have our share of bitter resentment as well. Young survivors are painfully aware of how much we have lost to cancer—breasts, testicles, colons, fertility, friends, the youthful confidence that everything will work out alright. These are hard pills to swallow, especially when you are in your twenties or thirties and your disease-free friends don’t understand.

Yet alongside the grief and loss, we can’t help but feel thankful.

In the immediate aftermath of treatment, we appreciate even the most ordinary moments. Denny was 28 when he got diagnosed with nasal cancer. His 35 doses of radiation, brutal rounds of chemo, and extensive mouth sores made it impossible for him to eat, so his doctors attached a g-tube to his abdomen. He said:

When I took my first shower after I got the appendages taken out, I cried for 20 minutes. I am a shower guy. When I was ill for nine months, it was squatting in the tub. When I take a shower, I feel liberated. I am reminded it is a luxury. Washing my hair is one of the most joyous things I do, because it is a luxury to have hair.

After you have been bald and vomiting and fearing death for months, you become remarkably easy to please. But there is wisdom in savoring simple pleasures.

Over coffee one day, a fellow breast cancer survivor told me, “I was walking up the stairs from the subway the other day, and this breeze started blowing, and it blew my shirt against my skin in this way that made me stop and think, ‘This is what it means to be alive.’”

I’ve often had those realizations since my diagnosis. Sometimes when I am floating on my back in the ocean or resting against a redrock canyon wall, I am struck by how lucky I am to be living through such moments. I have seen the alternative. I know I could just as easily be in a chemo chair, fighting off an infection in a hospital bed, or facing death. But instead I get to feel the sun on my face and hear my family’s laughter.

The list of things to be thankful for is long. I am grateful that my cancer did not recur, that my husband was an incredible support during our ordeal, that I was able to have my daughter even after chemo. I have many gifts in my life, and I appreciate each one of them. But there is something about the simple moments and the small luxuries that bring the gratitude home.

At dinner tables across the nation this week, people will raise their glasses and say they are thankful for their health. I am sure they will mean it, but we cancer survivors know its true value. And we know that sitting through another Thanksgiving meal is reward in itself.

Cancer survivors know life can be stolen away at any moment. We have earned our gratitude. We may as well enjoy it.

One survivor of testicular cancer explained, “Since my diagnosis, I am able to put things in perspective. If I have a bad day at work, my kid is screaming, my house is a disaster. Well you know, fuck it! I am alive! I appreciate the time I have.”

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.

Is There Really Comedy in Cancer? The Guys Behind 50/50 Know the Answer Is Yes

Is There Really Comedy in Cancer? The Guys Behind 50/50 Know the Answer Is Yes

Receiving a cancer diagnosis generates its fair share of tears, but every survivor knows you can also get a good laugh out of the tragedy unfolding in your life. My husband and I used to chuckle when people said our baby looked like me—we figured it was because both my son and I were bald.

One friend of mine held a “Bon Voyage Titty Party” before her double mastectomy. A young woman I met at Sloan Kettering called the survivor’s support group she went to her anger management training. Another survivor, Denny, likes to laugh at the time he hooked up with a handsome guy from his gym and the tape came off his gastric feeding tube and it started flopping all everywhere.

It’s a relief to find moments of hilarity along the hard road of cancer and its aftermath. Yet like any gallows humor, it has to be earned. You can’t start cracking jokes about cancer if you haven’t been in the trenches. When one distant relative guffawed that going bald would give me a chance to experiment with some really funky wigs, I remained stone faced. He had no idea what I was going through.

But jokes from fellow survivors tend to translate well, which is why I am hopeful about the upcoming film 50/50. Starring Joseph Gordon Levitt and Seth Rogen, the movie was written by Will Reiser, a guy who knows all too well how cancer can give rise to the ironic smile and even the deep belly laughs.

“Six years ago,” he explained, “I was diagnosed with cancer. It was a pretty difficult time for me, but it was also an incredibly absurd and funny time. You never imagine that cancer will equal funny.”

It helped that Rogen—who knows how to make anybody laugh—was his best friend at the time. Rogen says that the fact that they were both 24 years old at the time made the absurdity of a dealing with life-threatening illness more pronounced. “I almost think we aggressively sought the humor in the situation as a way to make it feel like something good can come from it.”

Now the team behind the film is trying to help others find the good laughs in hard times. Joseph Gordon Levitt has launched a project called Hit Record in which he is inviting people to send him stories, video clips, or art that reveal the humor in times of struggle. Levitt will then turn some of the pieces into short films and share them online and possibility at film festivals.

Entries don’t have to be about cancer, but I think survivors have an advantage: if you have stared down the disease and can still find the funny in it, your comedy chops are probably in good shape. Click here to share your cancer laughs.

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.

StandUp2[Stupid]Cancer!!!!

StandUp2[Stupid]Cancer!!!!
Changing The Dialogue About How To Change Cancer Research

For those who know me, it’s shouldn’t come as a surprise to learn I employ a low tolerance line for BS and live a guiding philosophy that tows a fragile line between “cautious optimism” and downright jaded cynicism.

For those who don’t know me, see above.

I am a disruptive and authority-questioning advocate for what I believe is right. I also try to stay objective to the conversation to deliver meaningful value to those willing to listen. So, when the other side of the coin is presented in a credible, legitimate and honest fashion, I’m unexpectedly pleased to rethink my opinions.

And StandUp2Cancer (SU2C) has done just that.

A little back-story…

SU2C was unveiled 18 months ago as “the beginning of the end of cancer.” A massive fundraiser telethon organized by some of the most influential women in Hollywood, it pledged to raise $100 Million for cancer research. I was cynical by default – if only due to my pre-existing disenfranchisement at the lack of recognition given to the young adult cancer community, a population within the continuum whose survival rates have not improved in 30 years. (Seeing as how the last 30 years of cancer ‘progress’ have failed the next generation of survivors, I had no reason to think the next 30 will be any different unless some kind of real change came along.)

Would SU2C be like the others; dismissive and uninterested in understanding the cause “cancer under 40″? Or, would they be open, receptive and willing to consider the possibility that actual progress and true innovation in cancer research involves an even split between “scientists in white lab coats” and “real world issues” such as medical education, access to quality care, age-appropriate peer support, insurance, fertility?

SU2C exceeded their fundraising goals during the summer of 2008, shattering all preconceived notions of what was possible. While impressed, I was still concerned whether *any* of that money would benefit young adults, a decision which would be objectively made by the American Association of Cancer Research (AACR), one of the nation’s most reputable institutions.

i[2]y encouraged the young adult community to put pressure AACR through a Facebook campaign (which at one point had over 30,000 members) to hear our voices. It was our hope that they would listen to our voices and be objective when considering which dream teams to fund, should any of them be innovatively focused on the unique epidemiological factors in young adult biology.

As it turns out, this was not to happen. The teams which were funded are focused on research which is targeted to benefit the majority population of survivors, aged 40 and over. (Normally, this is the part where I air my grievances)

But not this time.

The research being funded by SU2C is “translational” as opposed to “basic”. What does that mean? Surf on over to http://bit.ly/5UzEF for a quick 101 on the very significant difference between “basic” and “translational” research.

SU2C is clearly changing the conversation when it comes to cancer research by choosing to operate under a new philosophy. This is definitely not the mentality of your grandfather’s cancer society.

With that said – and while there’s nothing wrong with more cancer research – it’s important to recognize that advances in treatments are only as good as the stage at which you are diagnosed.

*This* was precisely the case we wanted to make to AACR and SU2C.

Young adults, aged 15-39, are the population most likely to get diagnosed at a very late stage, where the cancer has progressed and advanced to the point where survival rates are lowest. Why? This population faces unique barriers to prompt detection such as a lack of medical insurance or dismissive medical providers who are not trained to consider the possibility that cancer CAN and DOES occur in our generation.

Ergo, what good are advances in cancer research when they generally have nothing to do with reducing the risk of late-stage diagnosis?

*This* is the conversation.

*This* is the young adult cause.

Apparently we made enough noise to get noticed because SU2C reached out this Summer with interest in meeting with us in Los Angeles to listen to what we had to say. And so, on Tuesday, August 11th, both myself and i[2]y Board Chairman Dr. Leonard Sender sat down with SU2C and opened the conversation.

The good news?

i[2]y will be continuing our dialog with SU2C and evaluating opportunities for how we might work together to bring more attention to these important issues.

It’s not just about white lab coats anymore, people!

It’s about improved medical education to ensure prompt detection, age-appropriate social support both online and offline, access to clinical trials and let’s not forget about those Stupid Cancer Happy Hours!

WE DID IT!

I have never been more proud to be a part of this intensely passionate community of extraordinary activists. Stupid cancer! Survivors rule!

Stay tuned and Rock on!

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.

The 3rd Annual Stupid Cancer UnGala NYC Drops This Wednesday!

The 3rd Annual Stupid Cancer Un-Gala NYC hits this Wednesday night and we’re all getting pretty stoked for yet another insanely awesome party in support of young adults affected by stupid cancer.

The i[2]y “Un-Gala” is just that – no black ties, no awardees, no ice sculptures, no fancy schmancy anything. Just you, friends, fans, food, drinks, DJs, dancing and the most *insane* raffle prizes you’ve seen this side of the Hudson. Seriously. (VIP Colbert Show tickets, autographed sports memorabilia, couture fashion items, boutique jewelry, 4-star dining certificates, DVD movie box sets collections, Mets tickets, retail gift cards and more…) [view raffle prizes]

Cancer be damned, this is *the* young adult mixer event of the year and you do not want to miss being there. Last year we had 250+ in attendence and this year we’re hoping to break 300 – especially with our ‘recession-friendly’ 3-hour open bar special for $65. You heard right. $65. Three hours. Plus food. (Ain’t no where in Manhattan you’re gonna beat that deal!) General admission is just $25 which includes “Cancertini” drink specials.

This year, 70,000 young adults (ages 15-39) will be diagnosed with cancer and 10,000 will die. Survival rates in young adults have not improved in 30 years. This is not ok!

Be a part of the change you wish to see, snap up your tickets right now and get yourself to Taj Lounge in Manhattan on 6/10.

If you cannot attend, make a difference for someone else, be an angel sponsor for $25 and help to ensure that young adult survivors survivors currently in treatment can attend for free.

Tickets: http://ungala.eventbrite.com

Stupid Cancer. Survivors Rule.

Cancer Rates Decline Again* (The asterisk is for fun!)

WASHINGTON (Reuters) – A steady 15-year decline in the U.S. death rate from cancer translates to about 650,000 lives over that time, the American Cancer Society said on Wednesday.

*UNLESS YOU’RE UNDER 40

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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.

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