The Palms Hotel & Casino
Las Vegas, NV
March 30 - April 1
Cancer - Just a Common Thread
It wasn’t really about cancer! That was something I didn’t expect from a conference that touted itself as “the premiere oncology conference and social networking event for the young adult cancer movement.” Sure, everyone there either had cancer or was involved in helping those dealing with cancer, but at the core of the event, cancer didn’t rank as number one, it was just a common thread like brown hair or blue eyes. I think that was important. After diagnosis, so much of a person's life is filled with oncology appointments, medications, pity looks, financial burdens, and whatever “new normal” means. This conference was a chance to be young around other people and not be different.
Lining up in the V.I.P. lane for entrance into RAIN, one of the hottest night clubs in Las Vegas, made me personally feel carefree for a change. I remembered I was more than my leukemia, I was still young. I thought back to before I had to worry about how I would afford my medication, or if I would have to fight my insurance company for treatment this month. Yes, my CML came with me to this event, but not as an illness, rather as an asset I could use to help create positive effective change in my surrounding world.
The conference centered around advocacy. We each have our own stories and experiences and when we find a niche that others haven’t discovered, that’s where we insert ourselves and become an advocate. What we have learned may be similar, but because of our backgrounds something obvious to you might not be obvious to me. Therefore, when we make the conscious effort to share our experiences we start to piece together a gigantic puzzle the world has yet to solve.
CML is special in the grand scheme of cancer. Not because it’s the “nice cancer” or “easy cancer”, because its not. It is special because it is on the cutting edge of how cancer will be treated in the future. I have yet to meet anyone who wouldn’t be happy to have the developments in other types of cancers that we CML-ers have had the privilege to at least try. TKI’s do not currently help everyone with CML, but they are a critical step in the forward movement of research and care. Wouldn’t it be wonderful if one day the word “cancer” wouldn’t invoke fear and assumptions of death?
With CML being on the forefront however, it is also misunderstood. Most of the young adult population does not remember how only a few short years ago CML was not the perceived neatly treated condition it is today. I had a conversation during this conference with another blood cancer survivor who informed me how lucky I was that I didn’t have to go through the struggles of traditional chemotherapy she had experienced over a six month period of time. I let her tell me about my experience for about fifteen minutes before I stunted her speech with how much my medication costs are each year ,and would continue to be for the remainder of my life. I couldn’t blame the girl for hearing I was on a daily pill that allowed me to keep my hair and assuming it was something simple like aspirin. TKI’s are not the first thought for treatment when the word cancer is mentioned. However, it is something that is helping many people in our CML universe, and we have to respect what it is and what it does. I think we CML-ers do sometimes downplay our condition using the same assumptions this girl did, it’s just a pill. It’s not just a pill though, it’s a life saving medication that has its own challenges and benefits.
There’s a difference between feeling lucky and becoming complacent. CML is still cancer. There are still pitfalls with treatment. We are lucky in that we have different TKI’s to try, but there are no guarantees. We can feel lucky, but we have to be careful not to become complacent. When we say “oh yes, we have a simple condition, that’s treated by a simple pill” insurance companies and other financial interest groups are listening. It makes it harder on future generations if we don’t acknowledge the blessing without discounting the work it takes to maintain the blessing.
If I learned nothing else from this weekend in Las Vegas, I learned cancer is cancer and although treatments may be different the emotional toll is the same. The only thing we can do is take this situation and use it to our benefit and to the benefit of others who will be diagnosed in the future. The message of this conference was not just one for young adults, but for everyone. Get Busy Living!
- Erin Havel, Young Adult CML Survivor, Seattle, Washington
Just back from the OMG Conference!
The OMG2012 Conference for Young Adults is quite possibly the BEST conference I have ever attended, and I've attended many. If I had to describe OMG2012, I would use words and phrases like "real", "relevant", and "to the point"!
The OMG conference doesn't spend time doing "Cancer-Lite", it devotes every moment to providing survivors and caregivers alike with tools and strategies for daily living. Nothing is off-limits or out of bounds. It's in your face, fast paced, and when one leaves, they're inspired, motivated, and most importantly equipped to handle whatever challenges come their way.
Young Adults (and a few "Faux" Young Adults) came from all over the country and abroad - the farthest being Australia. For many, the first experience with an OMG conference can be sensory overload but it doesn't take long for that "A HA" moment to come when they realize these people "get it".
I met Matthew Zachary, Founder and CEO of Stupid Cancer, in the summer of 2008 when we were both selected as delegates to the Livestrong Summit. I vividly remember the atmosphere around him - it was akin to that of an up and coming celebrity and one that could draw people instantly with their passion for the cause and straight forward approach to dealing with cancer. I knew at that moment that this was someone who was going to set the world on its ear. Today, I can say without a doubt, "I told me so!"
After an early flight to Las Vegas, I arrived on Friday morning and immediately set about connecting with old friends and fellow advocates. I was also excited to be meeting CMLer Erin Havel and Stephanie Lewis, a strong and determined CML "carer". Together we crafted our strategy to gather as much information possible during the brief time we'd be in Las Vegas. Boy, did we learn a lot!
The weekend proved to be jam-packed with great sessions, great information, great friends and great times. I look forward to sharing more about the conference on this page!
Stay tuned for more!
More from the conference coming soon! In the meantime, enjoy this video interview with young adult CMLer Erin Havel.