For the past 1,000 days, I participated in Day Zero’s 101 Day Project, a unique challenge that inspires you to set and achieve your personal goals in life. My friend Caitlin had started one, and I was intrigued. At that point, I had been in five years’ remission from cancer and was basically a lump when it came to goal setting. The diagnosis had resulted in my having a hard time looking in the future, as I got in the mindset of “Well, anything can change quickly.” I thought that starting the list would be better than a so-called bucket list in inspiring me to look forward again. (And I’d just beaten cancer… why would I want to think about kicking the bucket?)
The challenge runs 1,001 days—I started September 12, 2010 and ended today, June 9, 2013. To count, tasks must be specific with a defined result that represents some amount of work on my part. Here’s a summary of my first list and what happened. Bolded items are ones that were completed. Not bad for my first try, with 54 of 101 goals achieved. I start Part II tomorrow, and will aim for 75 next.
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!
- Nearly 70,000 people between the ages of 15 and 39 (collectively called AYAs) are diagnosed with cancer each year.
- Cancer kills more people in the AYA age group than any other disease.
- Even though survival rates have steadily improved for children and adults who have cancer, survival has lagged behind for AYAs.
- The roadblocks: low number of clinical trials for AYAs and poor participation; delayed diagnosis of primary cancers; inadequate treatment practices and settings for AYA cancer patients; poor understanding of the biology of AYA cancers; limited access to care and insurance coverage for AYA cancers; limited emphasis on prevention and early detection for AYAs; and unique AYA psychosocial and supportive care needs.
I’m one of these young adults. In 2005, at the age of 22 and a few weeks after my college graduation, I was diagnosed with Non-Hodgkins Primary Mediastinal Diffuse Large B-Cell Lymphoma, stage IIA. In short, I had a tumor the size of a grapefruit in my chest with smaller tumors throughout my chest cavity. I went under six rounds of R-EPOCH chemotherapy, and now I’m nearing my seventh year of remission. Some of my peers aren’t as fortunate.
These past few days, I had the opportunity to spend time with the 550 most inspirational people I’ve ever met at Stupid Cancer’s annual OMG Cancer Summit for Young Adults in Las Vegas, a conference for young adult patients, survivors, and caregivers.
We came from all walks of life: some of us had cancer when we were children; other were adults just starting their independent life. Some of us lost breasts, testicles, and limbs; others didn’t even lose their hair. Some weren’t even old enough to drink; others were 20 years in remission. It wasn’t a contest or a pity party, because we all had one thing in common: we had cancer. We were put through an emotional, mental, and physical challenge. It didn’t matter if we were still in treatment or out of treatment, we all had one goal: to get busy living and share our experiences with others. (If you have 10 minutes, here’s a documentary put together by Stupid Cancer, the premier young adult cancer organization.)
It’s a club you don’t want to belong to, but like founder Matthew Zachary said with a nod to Olive Garden, when you’re here, you’re family. I knew many of the attendees from past OMG events (this was my third and most amazing), some from online, and many I’d never met before. But it didn’t matter – we all felt like old friends by the end of the three-day event.
If you don’t understand the impact of the AYA movement, Stupid Cancer, and the OMG Summit, I’d like to share this story. In 2005, when I was diagnosed, I only knew two people with my cancer: my mentor through the Lymphoma Research Foundation and a girl my age who’d been diagnosed at the same time and was undergoing the same chemotherapy at the same hospital. The girl died after only a few treatments, leaving me frightened. There weren’t many online resources or other ways to connect with people who had the same cancer. That’s all I knew: one person who lived and one who died.
But this past weekend, I took a picture with eight survivors of my cancer. That’s double the number who attended last year’s summit. And now there are 145 patients, survivors, and caregivers in a Facebook group I belong to for that cancer.
This weekend, I was with 550 people who understood everything I’ve gone through. This will only grow if we continue to educate others, share our stories, and fight for other young adults. Please take the time to learn more about cancer in young adults. If you’ve had or have been affected by cancer, share your story.
We’re not alone.
A Writer’s Book of Days (01/15) – It’s Saturday. You’re Not At Home.
I rummage through the rack of scarves, picking up a gold-embellished pashmina. Only $2! I put it in my cart, which is filling up with clothes, books, board games, and other long-discarded items. It’s just another Saturday rummaging through thrift stores with Lexcie. He’s off looking for Coca-Cola glasses, which are found in almost every store we go to.
Thrifting is relatively new to me. Once in a while, I’d stop at a garage sale or local thrift store to see what things people were getting rid of. Sometimes I’d end up with a new novel for a quarter or perhaps a nice basket. It wasn’t until Lexcie introduced me to the mega thrift store (Salvation Army, Goodwill, Savers, and consignment boutiques) that I’d really become a convert. I’m constantly finding brand new clothes, expensive books, and vintage accessories for mere dollars. (That is, unless Lexcie watches my shopping cart. A lot of things for mere dollars can add up to $50 or $60, I’ve learned, especially when you’re in Great Britain and thrift store density is akin to Starbucks in New York City.)
Some of my best finds include: a $60 pencil skirt for $3 (new with tags); a vintage teal Samsonite Fashionaire carry-on, which I now use as my briefcase; a $50 Ann Taylor scarf for $4; and plenty of spectacular, signed vintage brooches for my jewelry collection.
I hardly shop retail anymore, which is good for my wallet and overall materialism. It feels nice to give something a second or third home. I’ve found some really great buys that I may not have necessarily sought out elsewhere, opening me to new fashion, new ideas, and new inspiration.
A Writer’s Book of Days (01/11) – You Are In A Motel Room
Mom, my sister Alyse, and I watched from the window as a freight train rumbled on in the distance. Ten, 25, 50, 80 cars – we lost count after 100. The motel we stayed in was in the Mohonk Valley of upstate New York. My friend Erin was having her Sweet Sixteen party at her new home in Edmeston, a town that falls in the middle of the Schenectady-Syracuse-Binghamton triangle. We decided to take a road trip up from Long Island.
It’s hard to believe that this was the same New York we live in. We saw green valleys for miles and miles from the hotel room. We’d gone horseback riding, explored Howe Caverns, ate lunch in a town with only one traffic light, tried sulfuric spring water in Saratoga, and passed many, many cows. It was a far cry from the ocean beaches, Long Island Railroad, and miles and miles of strip malls I was used to.
That road trip wasn’t as glitzy as many of the vacations my friends had taken – weeks at Martha’s Vineyard, transcontinental flights to California, resort stays in Mexico. We didn’t have that kind of money.
But I didn’t know that. Mom always made sure our trips – this was our first multiple-day jaunt since I’d gone to Disney World at five – were full of fun, unique, and memorable experiences, even if they didn’t cost a lot of money.
Even though our money situation has improved drastically since then, we still don’t go for the glitz. Vacations are spent meandering and exploring, sometimes throwing the map to the wind. Luckily, my fiance Lexcie shares the same traveling philosophy. Our house is full of treasures from those trips – rocks, seashells, little trinkets picked up at a small town gift store.
It’s finding a stone with the words “THERE ARE NO COINCIDENCES” painted on while horseback riding in the Mohonk Valley. Eating stinky tofu in a little mining town in Taiwan. Finding a free pair of roller blades on the side of the road while taking a different route than originally planned. Buying the most comfortable hammocks ever from a seaside shack on Prince Edward Island. Visiting Islip, England just because it has the same name of your hometown.
You never know what you’ll find along the road less traveled.