This week is the 10th annual  National Young Adult Cancer Week. Why should you care? According to the National Cancer Institute:

• 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.

Photo: Kenny Kane

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 (01/17) – Write About A Time You Found Out About Something You Weren’t Supposed To Know

I’ve been an avid reader, ever since I was a child. I’d read anything I could get my hands on, and the wall-to-ceiling bookshelf in our old living room was a gold mine – my particular favorites were a National Geographic anthology and the Lexicon Universal Encyclopedia set. Strange kid, I know.

One day, when I was eight, I pulled out an illustrated herbal encyclopedia. As I flipped through the pages, a white piece of notepaper fell out. I read the decidedly adult cursive, which described a man my mother was to meet at the airport. He was tall, had a mustache, was a romantic, and would bring flowers. He had a very basic name, like Paul or Allen. Oh, it was scandalous. My parents were divorced and my father had remarried, but I didn’t know there was such a fellow in my mother’s life.

I couldn’t breathe a word of this – I didn’t want to get in trouble for snooping. Nor was I going to tell my little sister, who would likely use it as ammunition against me later. I had no one to tell this secret. I tucked the note back into the book – it was between the marjoram and  marshmallow root pages. I made sure to put it back in the exact place I found it.

As far as I knew, there was never such a man. Once in a while, I’d take the book out and look at the note again. Then we moved, and the book was long forgotten, stored in a box with cookbooks somewhere in the basement.

But when I was in my early 20s, a renovated kitchen meant there was more room for the books. Mom brought the box up from the basement and took the books out one by one, piling them on the table. At the top of one pile was the herbal dictionary and I quickly grabbed it, shaking out the pages. No note fell out. I thumbed through to the marshmallow root page. Nothing.

Mom asked what I was doing. So more than 12 years late, I confessed my knowledge of the mysterious stranger. She looked baffled. Apparently, she didn’t remember the note, nor had she ever met such a man. I described what I read, and she laughed. She said it sounded like a dream a friend had and wrote down for her or something an astrologer might have told her. I believed her – there would be no reason why she’d not let me in on a romance so many years after the fact.

It was certainly the longest time I’ve ever had to keep a secret. And when you’re eight, that seems like an eternity.

A Writer’s Book Of Days (01/16)  - Write About A  Bed

It seems that any time I’d like to take a nap, it’s easy to fall asleep. Any place easily becomes a bed – a couch, a chair, a car seat… even a floor, if needed. Public transportation is especially snooze-conducing.

Why the heck is it that when I actually want to go to sleep for more than four hours, it’s impossible to fall into a peaceful slumber? Suddenly that comfy couch I usually sink into feels as hard as a rock. Forget my actual bed – the blankets are uneven, the pillows are not fluffed right, and I can feel every wrinkle beneath me. Instead of falling quickly asleep, I toss, I turn, I think too much, and then eventually get up, defeated.

I’ll then do something to make me tired, like read a book. When my eyes become heavy and I’m reading the same sentence over and over again, I’ll attempt sleeping again. But the bed still isn’t as comfortable as it is when I go to take a nap.

Is there some bed coziness-to-sleepiness ratio I’m unaware of?

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.

Flickr: Pete Boyd

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 (01/14) – Write About The Horizon

“Wait a second, are we supposed to be going over a bridge?” Mom asked as the J train rumbles into daylight.

Crap. I forgot that Essex Street and Delancey Street were the same station and missed the stop.

In a few months, I was moving to the Bronx for college and was still learning the intricacies of New York City’s subway system. We certainly weren’t supposed to be going over a bridge. Nor did I know that the next stop, Marcy Avenue, wasn’t in the greatest neighborhood.

We got off the train at Marcy Avenue and waited for the next uptown train. There were some interesting characters loitering around the station, and I knew Mom was a bit nervous. She hadn’t ridden the subway in decades, and this wasn’t exactly a mistake that would calm someones reservations.

Finally, an M train pulls into the station and we hop on, taking a bench seat by one of the windows. It starts moving back toward Manhattan.

“Look at what God painted tonight,” Mom whispered, pointing to the sun setting over Manhattan’s horizon. The sky towards the front of the train was filled with brushstrokes of orange, red, gold, pink, and purple. It was one of the more spectacular sunsets I’d seen.

Flickr: bondidwhat

“Look!” she said more loudly, pointing towards the east. Not only we were witnessing a beautiful sunset, but a rare moon rising over Brooklyn’s horizon.

Sometimes missing your stop isn’t such a bad thing after all.

A Writer’s Book of Days (01/13) – After Midnight

“After midnight” means different things to different places. If I were to step outside my front door after midnight, I’d experience the eerie calm of a bedroom community sleeping.  There aren’t many cars on the road. House lights click off one by one. You can hear sounds from miles away – a Long Island Railroad train in the distance, traffic driving down Sunrise Highway, an ambulance racing towards Southside Hospital, a dog barking. It’s peaceful, but often times unsettling.

It’s like the world’s heartbeat has gone silent and I need to know it’s alive. Sometimes I feel slightly unnerved as I walk the block home from the train station, past the dark apartment complex and houses. There are people inside of those houses, but it doesn’t feel like there’s life. The only movement is from the 7-Eleven on the corner.

One of the most interesting ways to experience that time of day is to spend an entire night in Manhattan. Lexcie and I did that two summers ago. Our trip started late in the evening, and ended when I boarded a 7 am train back to Long Island. Some neighborhoods are like my own – quiet streets, no cars, and perhaps some boat horns in the distance. Times Square is almost like a casino – you’d couldn’t tell if it was 9 pm or 1 am with all the people milling about. Diners were packed with barflies and people ending late shifts at 3 am, while the Staten Island Ferry was surprisingly packed for 4 am.  It’s certainly the city that never sleeps.

Flickr: Coffee Maker

Although it was the heartbeat I was looking for, I felt something was also unsettling about the constant movement. Would I give up the eerie, yet peaceful silence of a bedroom community for this? I’ve yet to find that happy medium.

A Writer’s Book of Days (01/12) – Write About Acceptable Losses

If anyone knows about acceptable losses, it’s cancer patients. We accept sacrifices we normally might not embrace in order to survive. We lose our hair. We lose our fertility. We lose our energy. We lose our appetite. We lose our inhibitions. We lose our fear of speaking up. We lose some dreams. We sometimes lose people in our lives frightened by our diagnosis. We trudge on.

It’s not just hearing, “You’re in remission” that makes us survivors. Sure, we beat some abnormal cells in our bodies. But we’ve survived more physically, mentally, and emotionally than you can imagine. We’re stronger people than you might think.

But more important than the losses is what we’ve gained. A new appreciation for life and your body. A new understanding of beauty. The realization that life is short and we need to get things done now. That new dreams can be made. That you’ll find people who will build you up, hold you close, and not let go.

It’s a new lease on life. Accept it, embrace it, and all good things will be yours.

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.

A Writer’s Book of Days (01/10) – Write About A Wound

It was a beautiful summer day, so I decided to ride my bike to the youth meeting at church instead of getting driven.  Being 14, cocky, and vain, I didn’t wear a helmet. (And it was the last time I’d ride a bike without one.)

Not only was I not wearing a helmet, but blatantly disregarding the rules of the road by pedaling on the left side of the street and on the sidewalk. I pulled my bike up the intersection of Islip Avenue and Main Street, a busy intersection in my town.  There was a driver ready to make a right turn on red. It looked like he was going to go, so I waved him on, even though I technically had right-of-way. He then waved me on.

We both went at the same time.

His car hit me on the left side, throwing me into oncoming traffic on Main Street. Luckily, I wasn’t hit by another car, but my bicycle was folded in half. I got up, shaken and bleeding from my left elbow. I hadn’t broken anything, but I was pretty scraped up and dirty. A woman, who had been waiting at the intersection, allowed me to call Mom from her car phone. (If that doesn’t place this in the ’90s, I don’t know what does).

The police showed up, but I refused medical treatment. I was more embarrassed than hurt by the accident at that time, particularly because I was partially to blame by not following the rules. The driver was 18 years old and had just gotten his license a few weeks earlier. He sat on the curb, shaking and chain smoking.

It took quite a while for my elbow to heal. I have slight scarring from it, but it’s not that noticeable if you didn’t know where to look. I also had a giant purple and yellow bruise from my left shin to my breastbone.

The biggest wound it left, though, was a psychological one. I’m very frightened by vehicular traffic, particularly if I’m walking or biking (and even while following the rules). It often annoys other people, because I take a much longer time to cross the street than most people. I won’t cross until I’m 100% sure a car’s not going to shoot out from somewhere and hit me, even if  it’s obvious to other people. I’m getting  better and more daring (at least to myself), but it’s still something that bothers me to this day.

A Writer’s Book of Days (01/09) – Write About A Ceremony

I have a knack for remembering vivid details of my childhood – some from when I was as young as three.

Kindergarten – 1988, St. Mary’s School – has plenty of snippets. Like the time I burned my hand on the hot plate when my teacher, Mrs. Stephens, made tomato soup for our class. Being supremely jealous of my classmate Michelle, who had a box of 64 Crayola crayons and I only had the 24-count box. Playing “Who Stole the Cookie from the Cookie Jar?” on the alphabet carpet in room K-A. Having a tooth fall out during nap time, causing disruption for the entire class. Having the bus driver forget to drop me off at my stop. My classmate Brian yanking down his pants in front of me and getting in trouble. Playing with the giant parachute and fleece balls in gym.

One particular memory that stood out for me was my kindergarten graduation ceremony. My sister Alyse, brother Aaron, and I had just got over a bout of chicken pox. Alyse, who was a year younger then me, refused to go to her pre-school graduation because she still had a dot on her nose. I wasn’t as vain.

It felt so much more grownup than pre-school graduation. Instead of just wearing a cap, we had dark blue gowns, our school color. We marched down the aisle to “Pomp and Circumstance,” just like we had practiced in the days before, and took our balloon-adorned seats on the stage-slash-altar (Catholic schools multi-tasked). The biggest moment, besides receiving our diplomas, was the recitation of our alphabet poem. In groups of three, we walked up to the front of the stage. I was the letter E, and had to recite, “E is for exercise and a good one for you is touching your toes without bending your knees” (while doing the very same). I still remember that line clearly. Any time I exercise (particularly the stretching part), I silently recite it in my head.

I’m still friends with many of St. Mary’s classmates – and some as far back as pre-school. We spent many ceremonies together on that stage: yearly awards presentations, First Communion, Reconciliation, our fifth grade DARE graduation, Confirmation, and finally, our eighth grade commencement. I wonder if any of them still remember their kindergarten poems.