My experience at OMG2014
August 14, 2014
By: Marianne Stephan
Menopause, sexual intimacy issues, scars, bodies that have betrayed… these are some of the many things you’ll hear out of the mouths of the women at OMG.
Stupid Cancer (stupidcancer.org) is an organization that gives young adults – women and men aged anywhere from 15-39 – a place where they aren’t alone with their cancer. OMG is their conference where hundreds of cancer survivors, cancer patients still in treatment, caregivers, medical professionals, and cancer organizations can come together and share, where people do not feel ostracized because of the disease.Over 450 people attended this year.
It was my first time attending, and I was not alone: there were a record number of first-timers present. Since I live in New York City, the headquarters of Stupid Cancer, and had been to meet-ups and the one-day summit in New York City (OMG/east), I decided to volunteer at OMG2014 in Vegas. I’m really glad I did! I felt very comfortable, and I didn’t feel the pangs of first-timer jitters. One of my friends who I had first met at OMG/east this past fall pointed out to me that I seemed so different this time around. She said she was happy to see this truer and more outgoing, outspoken side of my personality.
I was a greeter for the welcome reception, and I got to work the door with two other survivors who would become my friends. I got a very important introduction to Dr. Leonard Sender, one of Stupid Cancer’s Board Directors and the Editor-in-Chief of the Journal of Adolescent and Young Adult Oncology. This meeting was on my bucket list for OMG: as a stage 4 endometrial cancer survivor, I wanted to share whatever information I could with Dr. Sender in order to help the medical community understand endometrial/uterine cancer in young adult women a little better.
OMG is definitely about being yourself. My roommate for the weekend threw her wig on the dresser (I remember those days having been bald from chemotherapy myself) and we had no-holds-barred chats about everything under the sun. At OMG no topic is off limits. These are people who have been there, people who “get it”. When I had a bit of a breakdown about how I looked in a bathing suit right before our pool party, my roommate was quick to remind me that OMG is the one place you don’t have to deal with being judged.
I was excited to have this comrade, this openness. When I was diagnosed, there was no one else my age who had the same cancer. Endometrial cancer is much more common in women in their 60s or later, so me and my sister survivors of uterine cancer are very rare. Since getting involved with Stupid Cancer, I now know three others. One of the girls joked that we are cancer unicorns.
At OMG I was able to participate in workshops and activities that are directly in line with what I want to start doing in my professional life as a Certified Personal Trainer. I took part in the First Step to Fitness workshop put on by the John Wayne Cancer Foundation, the Practical Nutrition workshop hosted by Ann Ogden from Cook For Your Life and Susan Bratton from Meals to Heal, and participated in the 5k Fun Run/Walk put on by the Ulman Fund for Young Adults.
First Step to Fitness was totally a joy for me and allowed me another volunteer opportunity as a room monitor. (I got to keep time for the speakers and run around with the microphone for audience questions). Mike Nelson, pro volleyball player and non-Hodgkin’s lymphoma survivor shared his own story and then got us moving, with the assistance of Loïc Bernard, Crossfit Coach. Hearing everyone from the coaches to the audience share their own tips for fitness was a lot of fun.
Practical Nutrition involved Ann and Susan giving us food myths and facts using bingo. I think everyone learned better ways to think about food, and many things surprised the audience. For example, ground hamburger is actually better for you than ground turkey. Also, it’s important to know your food sources! Kristen Leah Rogers, the founder of Chemo Bites, gave out prizes for Bingo winners: Chemo Bitescare packages full of nutritional snacks.
As someone who lost over 200 pounds before my diagnosis in January 2012, I had already started living a healthy and active life when cancer decided to target me. My stage 4 diagnosis was treated with a 7 1/2 hour surgery and six rounds of chemotherapy. My oncologist constantly attributes my making it through surgery and my subsequent hospital stay with as few issues as I did to my commitment to my health and to the gym.
My chemo had some hiccups: for every three-week session, I was almost immobile for about a week or week and a half. Debilitating joint pain and breathing problems, which would later be diagnosed as chemo-induced asthma, were side effects I had to contend with over and over again, and they have left their mark. I still suffer from neuropathy, asthma, and some joint pain. But as soon as I was able to get out after my chemo “hot zone” I spent time with friends, went to the gym, enjoyed the summer of 2012 in NYC, and helped my friends prepare for their baby, my niece.
The Fertility: New Options workshop was the one I was most looking forward to and most dreading at the same time. You see, when I was told the magic words “you have cancer,” my first thought wasn’t about death, it was about the loss of my chance to have a baby or babies of my own. I was diagnosed right before my 33rd birthday and had yet to start a family while I was doing all those things your typical woman living in New York City does.
I was able to deal with my feelings about my infertility pretty well for someone who was supporting their best friends through the birth of their first child. I can’t wait to have a child just like her by whatever means I can. She truly means the world to me. In some odd twist of fate, I believe my best friends became parents at the right time: right when I lost my ability to. My diagnosis was scary for me and everyone who loves me, but thinking about this baby that was coming into our lives helped even more to pull the focus away from the awfulness of cancer.
While I sat in that workshop at OMG listening to my new friend Jen Rachman, one of the speakers and the Outreach Coordinator for Circle Surrogacy, talk about her own experience, I immediately started crying. I raised my hand and shared with the room that I’m surrounded with the most wonderful friends and their terrific children, and that I love it, but that it hurts so badly to know that that will never be me. People who know my story are quick to tell me I can adopt, and yes I can, and I likely will, one day. But that’s putting a band-aid on a much more serious wound. When I had to have a total hysterectomy, I had no choice but to give up my own chance to produce a family. Having that taken away from me is still one of the hardest pills cancer has ever made me swallow. It was amongst these people who “get it” that I was able to release a little bit of all I had been suppressing since I had been diagnosed two years previously. Because I could let go, that pill doesn’t own me as much as it did before. While I was crying I got a much-needed hug from one of my new friends at OMG. I’m so thankful for that hug.
OMG has most certainly been a life-changing experience. It has opened new doors for me to pursue as I move forward in my personal and professional life. It has also given me so many new friends who understand this journey that I’ve been on. Whoever you are, whether you have, had, or have never had cancer, take a little piece of advice from Stupid Cancer’s Founder and CEO, Matthew Zachary, and Get Busy Living!
