This week, I returned from Stupid Cancer’s sixth annual OMG 2103 Cancer Summit for Young Adults, a nearly four-day conference for young adult cancer patients, survivors, caregivers, professionals, and advocates. It’s the fourth year in a row I’ve attended this amazing conference, which began in New York City but has been held in Las Vegas for the past two years. Before you think this is some boring oncology event, think again. Here are 10 reasons why you should attend an OMG Summit:
1) People understand what you’re going through – You can drop words like neutropenia, stenosis, and metastasis without people asking you what they mean. No one cares if you have to zonk out in the middle of the day or can’t drink. You’re not the only one having a hard time losing weight, growing hair, or trying to find your way again after cancer. We’ve all gone through a lot and can relate with each other, share what we’ve learned, and make the whole crazy cancer and survivorship ride a little easier for each other.
2) You won’t be judged or pitied – No one cares that you have one testicle, no nipples, a bald head, a red scar snaking across your chest, or walk with a cane. We all have our battle scars. And it’s nice to finally say, “I have/had cancer” without someone giving you the pitiful “Awww, you’re too young… my cat has cancer too” spiel.
3) You’ll learn something new – With 25 breakout sessions and 50 speakers covering myriad topics for patients, survivors, and caregivers, you’ll arm yourself with plenty of knowledge, no matter if you’re newly diagnosed or 10 years out of treatment. From sex to survivorship, environment to insurance, and fundraising to fertility, there’s something for everyone. Many of the sessions are repeated so you don’t miss out on vital information. The speakers are not only top healthcare professionals, but advocates, caregivers, and survivors. Click here to see the panelists from OMG 2013.
4) You’ll be entertained – This isn’t your grandfather’s oncology conference. One of the biggest problems adolescent and young adult (AYA) cancer patients and survivors have is age-appropriate support. But the OMG Summit changes all of that, delivering what could have been ho-hum information with straightforwardness and humor. For instance, OMG 2013 closed out with a comedic routine by Dr. Zubin “ZDoggMD” Damania, who in his own words mashes “medicine, music, and madness to educate and entertain.” We also watched the First Descents documentary Out Living It, played Re-Mission 2 at HopeLab‘s exhibitor booth, and watched as Stupid Cancer presented filmmaker Andrew Jenks of MTV’s “World of Jenks” with its Social Impact Award. And there was plenty of time to dance.
5) You’ll hear the latest on the AYA advocacy and research front – Top doctors, oncologists, healthcare pros, and non-profits are on hand to talk about rapidly changing AYA advocacy and research. (I have to say, I felt pretty darn smart coming out of sessions after learning about genomics and neurospychology.) Most sessions end with a Q&A period, allowing them to answer your burning questions on topics that run the gamut: treatments, late effects, sexuality, complementary medicine, carcinogens in the environment, and more. Plenary sessions focused on genetic breakthroughs and personalized medicine, as well as progress in AYA research and AYA clinics.
6) You’ll meet people working hard to make sure the AYA voice is heard – You’ll never meet a group of more dedicated folks than the employees and volunteers of Stupid Cancer and all of the non-profit and advocacy groups that attend and exhibit at the conference. With young adults accounting for 72,000 new cancer diagnoses each year, it’s critical that the medical community understands our needs from treatment to survivorship and beyond.
7) You’ll be inspired – There are so many inspiring people contributing to the AYA cancer community, from starting non-profits to running marathons and embroidering hats to granting cancer patients and survivors dream days. If you have no clue how to get involved, you’ll find plenty of ideas at the OMG Summit.
8) You’ll laugh and cry – Where else can you be telling someone a cancer joke one minute and then crying over shared experiences the next? Once and a while you’ll even get thrown a curveball, like a surprise marriage proposal. Plenty of tissues are provided. (And alcohol for those who need it.)
9) You’ll learn to get busy living again – The OMG Summit is not for people who want to stay in bed all day and cry, “Woe is me.” It’s about not letting cancer rule your life and giving it the bird. Sometimes you need a little help, and everyone in attendance is there to give you ideas and support to make that step.
10) You’ll make friends for life – If there’s anything positive that comes out of cancer, it’s the amazing, supporting, fun friends you make—a rapport that lasts well beyond the walls of the OMG Summit.
If you missed OMG 2013 this year, you can still attend the OMG2013/East one-day conference in New York City on September 28. It’s a bit more intimate that the annual event, but has the same, great purpose and people. Hope to see you there!
Easter is a holiday usually spent with family, but this year was a bit different. Mom decided to spend Easter in Florida with my brother, who moved down there last year. Alex and I were left to our own devices, so we thought we’d do something we’ve never done before: the NYC Easter Parade.
It was a goal on my 101 in 1,001 list to participate in a parade, and I was originally supposed to march with Fordham University in NYC’s St. Patrick’s Day Parade this year. But it snowed and rained that day, so in order to fulfill that goal, it was the Easter Parade or nothing. So bonnets it was. (At least it wouldn’t be as complicated as the time we built reefed subway cars for the Coney Island Mermaid Parade in 2008.)
Of course, we don’t like to be normal, so it couldn’t be straw hats and fake flowers. We thought it should be something NYC themed, like the subway cars. Since we already did those, Alex thought that perhaps we should do buses. At some point, we came up with the idea of doing Staten Island Ferries… but instead of a normal boat, it would have bunny ears and and a tail. As an appreciator of all puns good and bad, the “Staten Island Furries” were born.
As we planned for our bonnets, we were discussing the other way to Staten Island—the Verrazano Bridge. Mom joked that was one way to “passover” to the borough. So, of course, we had to make the bridge hat. But we needed a third person. And who better than our friend Deena from Fireball Network!
The hats turned out to be a lot more complicated that we originally thought they’d be—I’d say they took about 15 hours in total, not counting trips to Michael’s and waiting for paint to dry. Using a combination of old Priority Mail boxes, a panko bread crumb container, plastic bowls from Panera Bread, fuzzy fabric, pipe cleaners, felt, glitter, brads, and a LOT of Mod Podge, we finally finished the hats:
Here I am with both hats (Alex and I wore similar Furry hats) and the sign Deena held with another pun: EZ Passover Accepted in All Lanes. (As she joked, if her people had as good directions back when, they wouldn’t have wandered the desert for 40 days and 40 nights.) It certainly took some posturing and alterations to keep the bonnets on our heads—not to mention it later got windy, and even mini Staten Island Ferries and the Verrazano Bridge sway a lot in the breeze.
“On the Avenue, Fifth Avenue, the photographers will snap us, and you’ll find that you’re in the rotogravure!”
We certainly weren’t expecting the reaction we got, especially since we were among so many creative bonnets! We couldn’t walk more than two feet without someone stopping us and then multiple people taking our picture. Not just folks on smartphones, but even press photographers. It will be fun to see what comes out in the news and Flickr over the next few days. So far, Deena and I have made Easter Parade coverage in the NY Daily News and all three of us appear on Whom You Know, Examiner.com , and Xinuhanet coverage. We must’ve gotten at least 300 photos taken of us, if not more. Real Staten Islanders were particularly amused (and somewhat disappointed that the three of us didn’t actually hail from their borough).
One memorable moment was someone smacking me hard on the butt. I turned around and it was a little boy, no more than two or three. “Picture!” he demanded. His mother was mortified, but I obliged.
Here’s another shot of us that was taken by David Handschuh from the NY Daily News:
I particularly enjoyed this tweet from a disgruntled parade-goer. Twitter name redacted to protect the moody teenager who was dragged to this awful parade by Mommy:
just saw a woman wearing a homemade easter bonnet shaped like the “Staten Island Furry” rabbit thing god what a freak TAKE ME HOME
Glad to be of service!
We wrapped up the day with some Potbelly Sandwich Shop then dessert at my brother-in-law’s family gathering (does that make them my in-law in-laws?)
Neither Alex nor I can walk anymore, and my legs feel like iron weights are attached to them. Even though two miles wasn’t a lot to walk (Penn Station to Grand Central Terminal to the parade route of Fifth Avenue between 49th and 57th streets), the constant stopping and posing took its toll.
More photos (and a post from Deena on what we learned at the parade) soon!
Lexcie and I spent a very long day crafting to put the finishing touches on our NYC Easter Parade hats. We’re covered in Mod Podge, glitter, paint, and hot glue, but we’re very happy with the results. Here’s a tease; we’ll reveal the fruits of our labor tomorrow:
We have lots of cleaning to do before Mom gets home from Florida.
Inspired by my friend Meg’s discussion about glitter roll-ons that were popular when I was in high school, I decided to focus on the typical day of a teenage girl in the late ’90s. The result: a 23-point list of how we spent our days, from morning to night, drawing on mine and my friends’ experiences in high school.
I had no clue how big this Buzzfeed article was about to blow up.
It was merely an experiment for me, to see how far a Buzzfeed article would go just by my promoting it a few times on my Twitter and Facebook accounts. Buzzfeed gave it a nod and a bump, and suddenly the hits started pouring in. I was elated that 500 people looked at my article.
Then at 11:56, I got an email ding on my phone. Buzzfeed sent an email that I had won a 1,000 views award. I was awed and crowed about it on Facebook. 1,000 views—take that! My friends congratulated me on my accomplishment. I then went to sleep.
The next morning, I was awoken by another ding on my phone. The 10,000 views award. In only six hours! Later that day—at 81,000 views—I received an email from a PR exec I work with out of Pennsylvania. “There was a Buzzfeed link being passed around our office this afternoon on being a teenage girl in the 90s. And then I saw your picture and byline on the article. There are many jealous PR girls that want your job right now (and it has to be more fun than writing for real estate) J,” she wrote. And then I received another email from a women I know in Florida. It was getting around!
I started seeing friends posting it on both Facebook and Twitter, not realizing that I’d written it. One of the best reactions was from my best friend Karen (one who didn’t realize) commenting how #22 was her life—she’d been my inspiration for that very bullet point!
By the end of the day, I had shot into the Top 10 of Buzzfeed community contributors, and my article had gone viral on Facebook and Reddit. The following day, it went viral on Tumblr. I was receiving emails, tweets, and Facebook messages galore about how I hit the nail on the head and it was like I was spying on people’s lives. (I only really needed to spy on my own to write it… no matter how many of us thought we were beautiful, unique snowflakes back then, we were for the most part—as the Buzzfeed reactions prove—the same.) By the 15th, it had hit 1 million views, and as I write this today, it’s well over 1.7 million views.
None of the subsequent articles I wrote for Buzzfeed gained the same sort of traction, although 15 Smells That Take You Back To Elementary School did fairly well. It was nothing like my first time, though. Every few days I get a tweet or email about the Typical Day article, with people adding their memories or noting what I forgot (I still refuse to acknowledge Tamagotchis).
What a trip—who knew high school days would hit such a good nerve?
Today, I found out that Sarah Thorp Acton—a former Fordham classmate and fellow editor at The Ram—died during a trip with her charter school students to Costa Rica. They haven’t figured out the cause of death yet, but it was sudden, and she was only 31.
I first met Sarah in 2001, when she was the newspaper’s news editor and I’d just joined the staff as a writer. She was instrumental in teaching me the ways of the newspaper, encouraging my growth, and giving constructive criticism I needed to better myself as a writer. She was one of the sweetest, gentlest people you’d ever meet—I can’t think of one person who didn’t like her. I will always remember her fondness for baking—I loved reading Facebook to see what creative cupcake she came up with next—and her love for pugs.
From what I’ve read online, she’s touched so many people in her life, especially her students at Buffalo’s Tapestry Charter School. Their comments and memories are truly heartwarming.
Rest in peace, Sarah. You were a good soul taken too soon.