Monthly Archives: April 2012

2 Years Of Stupid Cancer

2 Years Of Stupid Cancer

The year was 2005. It was springtime on Long Island. I was a high school senior, on the cusp of graduating, with real life staring me in the face.

 

Today, the exact details are fuzzy, but the feeling remains. My father, aka Big Daddy Kane, hit me with a ton of bricks. After noticing a change, followed by a medical exam, followed by more exams, he learned he had testicular cancer. This was my first bout with cancer. As his primary caregiver, I feel entitled to own a piece of it.

 

I had worked as a pharmacy technician since the age of 15. I knew about cancer and treatment and loss. I became increasingly aware of that last bit, having seen customers in my little mom and pop store come and go. I accepted it as part of growing up, and it taught me a lot. For years, I considered becoming a pharmacist, and being a cog in the healthcare machine. But after I realized I was neither mathematician nor scientist, the dream faded.

Dad had his surgery, rounds of chemo, and more surgeries, and ultimately walked out of the hospital for good. He was in remission. Or was he cured? What did these words mean, anyway?

 

Fast-forward a few years of community college and state school to a 5-year “super senior.” I took a random elective focused on writing grants. Through a serendipitous friendship between my teacher and a young adult cancer survivor, Cyndy S., I learned one evening about what a 501(c)(3) was. I was introduced to the I’m Too Young For This! Cancer Foundation. Knowing I had to complete a 90-hour internship to graduate, I immediately went on the website and was called out by my professor for being disrespectful to the speaker.

 

It was a holy shit moment. I was thrust into this sub-culture of a forgotten population of cancer survivors. Sure, I knew about bald children and grandmothers with breast cancer, but this was all new to me. I was also introduced to the sardonic wit of Matthew Zachary. The enemy was anyone who didn’t “get it,” and their name was “douchebag.” On September 21, 2009, I sent in my resume to the man behind the curtain, MZ.

 

My first in-person meeting was in a conference room in midtown. I was in a room full of cancer survivors, volunteering for an organization that seemed like a tech company in disguise. My second trip to my new internship in NYC was quite different. I got to the office on time and was met by a unique individual name Chad Whitman. I say unique with love, because anyone who met him knew right away that he was special. He was dancing to techno music while bundling hospital literature. He greeted me with “hey cutie,” and I told him I was looking for Matthew Zachary, who had stepped out moments earlier. I had no idea what I was in store for.

 

After a few months, my 90-hour internship turned into a 300-hour internship, then a part-time job, and ultimately a full-time job. I quit my pharmacy tech gig after 8 years of counting pills and a suddenly useless knowledge of brand and generic drugs. May 2010 was a great month. Dad was doing well after being diagnosed 5 years earlier, I was graduating, and I had a job.

 

I titled this piece 2 years of Stupid Cancer, but in reality it has been 32 months. A lot has happened. I’ve met scores of incredible people, some cancer survivors, some caregivers like myself, and others who are passionate advocates. I’ve lost some of the friends I made, a reminder of why we go to work every day, and why it’s so important to continue what we’re doing.

 

I recently had the opportunity to travel from one coast to the other in a Volkswagen Beetle, making house calls to some of our most active cities. Aside from seeing how incredible our country is, I was exposed to some incredible people. Cancer survivors are a different breed and some of the best people I’ve known.

 

I wish there wasn’t a need for my job, but at the same time, I couldn’t picture doing anything else.

Kenny Kane

Kenneth J. Kane has been coding since the age of 13 and began a career as a pharmacy technician at the age of 15. In addition to is pharmacology skill sets, he also has extensive experience in social media integration, digital platforms, graphic design, CRM design/implementation and corporate operations.

During his undergraduate at Farmingdale State College in the Fall of 2009, Kenneth was brought on as an intern through the organization’s Long Island chapter to help with local community organizing, event development and CRM integration. Over time, he became evermore increasingly involved assisting in local, regional and national events, fundraising, program development, grant writing, operations and human resources. In the Summer of 2010, he was hired full-time as VP, Operations and, in 2012, was promoted to EVP, Mission.

He currently oversees the organization’s information technology, content curation and social media strategy as well as e-commerce, mobile, volunteer management, fiscal oversight, internships and CRM/CMS management

A young adult personally affected by cancer through the diagnosis of family members and friends, Kenneth has spoken on behalf of the organization at numerous local and national events, such as the 2010 OMG! Cancer Summit, 140 Character Conference Long Island, Health2.0 NYC, The Center For Nonprofit Success Social Media Summit and the National Coalition of Oncology Nurse Navigators.

OMG Summit in Vegas Shows the Power of the Young Adult Cancer Movement

To the casual observer, it looked like a typical night in Vegas. Several hundred people were packed into a club, talking, dancing, and enjoying views of the strip. But when the rapper Urbalist came out and started performing a song called “Stupid Cancer,” it became clear this was no ordinary event. Everyone in the room could relate to the song, because everyone in the room had been touched by cancer at a young age.

In the towns and cities and cancer centers we had come from, we were the oddballs—younger than other survivors by decades yet older than our peers because of painful life experience. But here at the OMG Cancer Summit for Young Adults, we had found our people. We were surrounded by others who understood exactly what it means to be hijacked by cancer in your 20s and 30s.

This is the power of Stupidcancer.org. Whether you went to the summit in Las Vegas or you stay connected online, you are part of something. You are part of a movement dedicated to making life better for young adult cancer survivors. And here’s something we can all be proud of: our movement is making concrete, tangible progress.

OMG reception at Moon

Sometimes that progress includes throwing a really good party. When you spend your days facing cancer treatment or dealing with its aftermath, you deserve a chance to blow off steam every once in awhile.

The OMG Summit organizers know the value of fun. Whether it was dancing in a gorgeous penthouse bar or laughing at professional comedians who happened to be cancer survivors or snapping photos of Chippendale dancers who stopped by the Testicular Cancer Awareness Foundation exhibit, the summit showed us a good time.

But it wasn’t all fun and games. The conference was also packed with panels designed to help us cope with cancer and its fallout. I had the honor of speaking on two panels, but I also had the chance to learn from other speakers and participants.

A group of skilled survivors and sex therapists led a great conversation about body image, loss of desire, and the pain of rejection. A panel of parents urged survivors to stop feeling guilty because caregivers support us for the simple reason that they love us. These are just a few of the amazing panels; keep checking the OMG site for videos of all the great talks.

In the end, it was the plenary sessions that really illustrated the progress of this movement. For decades, young adult cancer survivors have been largely invisible the field of oncology and that costs us dearly: Our diagnoses come too late, our survival rates have barely changed, and our unique physical and emotional needs are often overlooked.

But thanks to advocates like OMG Summit Founder Matthew Zachary and visionary oncologists like Dr. Leonard Sender, young survivors are becoming more and more visible.

Stupidcancer.org Founder Matt Zachary packs the Pearl Theater

Now the Stupid Cancer Show has 1.6 million listens and Stupidcancer.org has 500,000 friends across social media. The Livestrong Young Adult Alliance works with clinics around the nation to provide dedicated services for young survivors. The National Comprehensive Cancer Network just issued new Clinical Practice Guidelines in Oncology for Adolescent and Young Adult Oncology, which will help set the standard for how oncologists care for young survivors. And researchers like Dr Sender and OMG speakers Dr. Brad Zebrack and Dr. Barbara Jones are generating more data about what works and what doesn’t work for young survivors.

Let’s be clear. This progress occurred because advocates demanded it. Young survivors and our supporters raised our voices and said the situation has to change. Our survival rates must improve and our emotional isolation must end.

We need to keep the pressure on. We can ask our oncologists what they are doing for young survivors, challenge our cancer center to offer more fertility options, or organize a Stupidcancer.org happy hour.

If we all keep raising our voices, then the next round of young people who get diagnosed with cancer will know they are part of a kick-ass movement that gets shit done and throws great parties.

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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