cancer

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.

Finding THE Perfect Wig

As a 2-time cancer survivor of Non-Hodgkin’s Lymphoma I found finding the right wig made me more comfortable going about daily life. I wasn’t much of a scarf or turban girl even though I owned several of each. I will never forget that morning when clumps of hair fell out in handfuls as I showered. When I slept, hair would come out on the pillow. I lint rolled my bed and head to try to keep away the reminder that I would soon have no hair. To conquer the fear, I built an army of blonde wig heads shortly after shaving my head.

I started out with synthetic hair since it was cheaper. I picked out a short style but found that since the back of my neck showed, the hairline did not look natural because when I changed position so did the wig. So I decided to try a long hair wig. This time I had a problem with the itchiness and heat it produced. Even with a “gel band” a strip of squishy silicone that had Velcro at the hairline and a wig cap, I was still uncomfortable.

 

A funny story I like to tell is driving with my synthetic wig. As it got hot and itchy I liked to take it off and throw it in the passenger seat. One day as I was driving, a mailman was walking on the sidewalk and saw me take my wig off. The look on his face was priceless as he did a double take. He had no idea what happened.

 

The benefits of a synthetic wig is when you wash it, it will keep the original style and shape. For curly hair this might be best. I wore a curly wig to my prom and dropped it off at a hair salon for them to add some sparkly hairpins. A huge disadvantage to a synthetic wig is you cannot style it with a curling iron or straighten it; the synthetic “plastic” will melt. Also the cap is not exactly fitted to the shape of your head so you my need double sticky back wig tape to keep it in place.

 

All these discoveries lead me to get fitted for a human hair wig. I feel in love with it right away. The cap breathed better and was not as hot as my synthetic wig, even though my synthetic had a monofilament “super breathable” cap. I could style my human hair wig on the wig head. The hair was beautiful and soft and I finally felt secure with my wig. I knew it wouldn’t fall off.

The best way to make sure your new hair looks real is to break it up in someway, either with headbands, bows or hair clips. Some girls even cut bangs so you can’t see the hairline. The hairline is the give away. There are many styles to order or cut that look natural such as layers or side bangs or a face frame.

 

Going through treatment is hard enough but loosing your hair can be even worse for some people. Not all people feel comfortable wearing wigs. Some people like a hat or just going out with no hair. Find something that makes you comfortable.

Heather Buchan

Heather Buchan is a two-time Non-Hodgkin’s Lymphoma survivor from New Jersey. Her first diagnosis was at age 16 in 2008. After high school and first semester in college she relapsed in 2010, requiring more treatment and ultimately a bone marrow transplant. After a perfect match transplant from her older sister, her cancer is cured and currently attends Syracuse University in the S.I. Newhouse School of Public Communications.

Can Elvis Cure Cancer?

Can Elvis Cure Cancer?

On a recent Monday morning, a young woman called into the Elvis Duran and the Morning Show and thanked the host for bettering her life. She was a survivor, and the radio show had become a ritualistic source of comfort for her. She claimed that Elvis had “cured her cancer.” In its typical jocular fashion, the cast speculated whether they could, in fact, cure cancer.

 

The next caller said that she’d listened to the show on the drive to each of her chemotherapy appointments, and the third caller said she was headed to an infusion appointment that very moment.

 

Teary eyed, I realized I could have been their next caller. Since returning to work after the induction and consolidation phases of my treatment regimen for AML (I’m currently in the maintenance phase.), I’ve listened to the program every day during my morning commute. Before diagnosis, I never stopped on 100.3 during my scan of the radio channels. Now, from 7:45am to 7:53am, I’m a captive audience. Why? Because Elvis is curing my cancer, or rather, during those eight minutes, he cures my mind of thinking about cancer.

 

For anyone unfamiliar with Elvis Duran’s broadly-syndicated radio show: think Seinfeld humor infused with pop culture references. The cast can debate, in a hilarious fashion, a topic as mundane as the reusability of plastic take-out food containers. During one of my morning drives, they brainstormed ideas for a tattoo for Elvis. The winner: A tramp stamp of a radio mic with the cord, tied in a Celtic knot, trailing downward. Elvis, Danielle, Froggy, Greg T, Skeery, and the others do particular justice to all relationship-related issues.

 

These eight minutes of my day are so enjoyable because the irrelevant topics provide an escape from the relevant anxieties that buzz in the back of my mind, but also because a side effect of cancer is a greater appreciation for the little, or mundane things. Laughter may not be as effective at killing tumor cells as Daunorubicin, but it is the best medicine for reducing stress.

 

The morning of SupidCancer’s OMG2012/East summit (great event, btw), I listened to Elvis on my way to the conference. The cast’s discussion on why certain cultures excel at ping pong prevented me from stressing about the traffic jam in which I sat and from dwelling on the fact that if I weren’t a survivor, I wouldn’t need the fantastic support system that StupidCancer provides.

 

I didn’t call into the show that Monday morning, but I did write an email to Elvis himself- my first fan mail ever. I’m not the type who’s impressed by celebrities. If I passed Tom Cruise on the sidewalk, I wouldn’t even pause (Bad example, but you get my point.). I told Elvis that I’m obsessed with him. Now, if he passes me on the sidewalk, he’ll probably cross to the other side of the street. What I meant by “obsessed” is that I’m fixated on getting past my fears and on with my life, and I’m appreciative of the eight minutes a day he gives me when I never think about cancer. And the pick-up he provides extends beyond when I turn off the radio.

 

What’s your eight minutes of Elvis?

Shelley Nolden

Shelley Nolden is a mother, a wife, a financial analyst, and a writer. In March 2011, an obstetrician informed her husband and her that their five-month-old unborn baby girl had no heartbeat. A week later, Shelley was diagnosed with acute myelogenous leukemia (AML), subtype 3 (APL). Shelley is currently in remission and receiving treatments to maintain that status. Like the rest of the Cancer Club, Shelley is trying to adjust to her new reality while keeping a positive mindset. Read more at www.shelleynolden.blogspot.com.

Cancer as Romantic Comedy: The New Kate Hudson Movie

Last week the Weinstein Company released a trailer for the new Kate Hudson romantic comedy called A Little Bit of Heaven. According to IMBD, “It’s a comedy about a guarded woman who finds out she’s dying of cancer, but when she meets her match, the threat of falling in love is scarier than death.”

The film seems to have all the trappings of the genre: a successful career gal (who is probably also a klutz like so many of her celluloid sisters), a stylish wardrobe, a cluster of dedicated sidekicks, and a handsome love interest.

Into this sleek, Cosmo-sipping world stalks cancer. Only it’s not the cancer that most of us young survivors would recognize—the harrowing, painful, and heartbreaking kind. It’s cancer as plot device: the troublesome obstacle separating our plucky heroine from true love.

And did I mention her true love is also her oncologist? Talk about meeting cute.


Not everything about this movie puts me off. Considering that most people still believe cancer only happens to grandparents, I am always glad to see young survivors represented in movies and on TV.

I also admit to having a soft spot for romantic comedies. They provided a welcome distraction during my eight months of treatment for breast cancer. The complete works of Julia Roberts, Meg Ryan, and Sandra Bullock could be as mind-numbing as Ativan.

And I have no ethical problems with Kate Hudson’s character falling in love with her oncologist. Most survivors I know harbor very intense feelings about their doctors. I certainly loved my first oncologist. He was young and handsome and smart—and gay, which along with my being married, kept the boundaries very clear—and he happened to save my life. What I felt wasn’t romantic love, more like in-the-trenches love, but when he left the cancer center to return to school, it did feel like a break up.

It’s not the oncology love or even the lack of baldness that I object to in this film. It’s the breezy nature of everything. Hudson’s character casually tells her friends she has cancer in the middle of dinner. She has glib conversations with god, played by Whoopi Goldberg. She is a storehouse of one-liners.

All survivors turn cancer into a punch-line sometimes. We need gallows humor to help us deal with the shitty nature of the disease. But judging from the trailer, A Little Bit of Heaven doesn’t have the biting, clear-eyed wit that rings true. It’s has the Hollywood softball variety.

I fear the film will deal with mortality in the same cavalier, cancer-lite manner. It’s unclear from the trailer whether Hudson’s character dies or is given the clichéd “second change.” But it seems to treat facing death as a good way to deal with commitment issues.

I have interviewed scores of young survivors, and their experiences with mortality are far more profound than that. They talk about being unable to plan past the next scan, grieving lost opportunities, and feeling the dread of living an abbreviated life. “It is dying YOUNG that bothers most of us,” one sarcoma survivor told me. “At 24, I don’t even have a boyfriend. My job is sorting mail. I have accomplished nothing in life of any importance yet.”

This kind of unvarnished truth simply doesn’t fit within the confines of a romantic comedy. Still, I am not giving up hope that Hollywood can capture what it’s like to have cancer as a young person. Nor am I assuming that the Tears of Endearment versions are the only ones that get it right.

I am holding out faith that another upcoming comedy will strike the right note. Live with It, previously titled, I’m With Cancer, was written by Will Reiser of Da Ali G. Show and stars Seth Rogen, Joseph Gorden Leavitt, and Anna Kendrick. It’s about a 27-year-old guy who gets spinal cancer. The blurb says, “With the help of his best friend, his mother, and a young therapist at the cancer center, Adam learns what and who the most important things in his life are.”

Sounds like it promises sharper humor and a lot more soul than A Little Bit of Heaven can deliver. But let me know what you think. Do you think Hollywood can ever get cancer right?

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.

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.

Pull The Cancer Card… For Real!

Visa HZ
They’re real… and they’re spectacular! Presenting a brand new way to support the I’m Too Young For This! Cancer Foundation and it’s mission to empower young adults affected by cancer – the official i[2]y VISA Platinum® Card. How frieken cool is this?

The Best Part? For every approved card used at least once, UMB Bank donates $50 plus 0.3% of all ongoing purchases for life! How frieken cool is that? And, as if that’s not enough incentive, credit crisis be damned, it’s actually a pretty sweet deal…

  • 0% Intro APR
  • No annual fee and no additional cost to you.
  • 24/7 Emergency Customer Service
  • 100% Fraud Protection
  • Rewards and bonus points (new!)
  • And much more…

So be the first on your block to sport your very own i[2]y VISA Platinum® Card and know that, by the simple act of buying, say, a Snuggie™, a ShamWow® or MightyPutty™ all of those proceeds will actually help young adults with cancer every day.

All credit cards give you a statement. This one lets you make one.

Stupid cancer. Survivors rule. Rock on! Apply now!

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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