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 (01/15) – 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 (01/11) – 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.

Today is St. Nicholas Day, a day when people in my household usually each receive a small gift in celebration of the feast days (this year, I gave Mom a copy of Shel Silverstein’s newest book, Every Thing On It; I received the Zagat Commuter Pack and Lexcie a tin of Almond Roca).

But each year around this time, I give a different gift – one to a child at a Women In Need shelter in New York City. Each year, the Association of Real Estate Women Charitable Fund plays Secret Santa to over 200 children at the shelters. If you participate, you’re given a wish list of three items a child wants for Christmas. You’re only obligated to buy one of the items, but most of the participants go above and beyond.

I first participated in the WIN Secret Santa three years ago. That first year, the coordinator sent me the list and I just about cried – the young boy wanted a bicycle. Like I did when I was 10.

That year, I had asked for a  bicycle for Christmas, as I had outgrown my old one. So did my younger sister Alyse. Little did we know that our family didn’t have enough money to afford new bicycles that year. On December 25, there were no bicycles under the tree, but we were satisfied with the other gifts that Santa had brought (that year, I remember a Troll doll, Magic 8 Ball, and Beauty and the Beast VHS).

After we’d opened our gifts, Mom told us to go into the living room to watch TV – and sitting in front of it were two shiny new bicycles bedecked in big ribbons. Alyse and I ran outside, still in our pajamas (but bundled up tightly) to test out our new bikes, riding them up and down the street in the bitter December cold.

Years later, I learned about our financial situation, and never understood how those bikes came to be. Mom eventually told me: two of her friends found out that we wanted the bikes and purchased them for us. They were our Secret Santas.

Now was my chance to fulfill that same Christmas wish for a little boy. It was the best gift I could have given anyone.

It’s been a while since I’ve blogged – life has been that crazy. So crazy that I just started fundraising for my annual Light the Night Walk, which benefits the Leukemia & Lymphoma Society. As many of you know, I am a six-year survivor of Non-Hodgkins lymphoma, so this cause is near and dear to my heart. Last year, I raised over $7,700, my best fundraising year ever.

This year, I’ve created a website, Squash Lymphoma, to make donating and promotion a bit easier. It talks about my history, Team Squash Lymphoma, the Leukemia & Lymphoma Society, and my fundraising efforts for the year. I will be walking at Bethpage Ballpark in Central Islip, Long Island on October 29.

To kickstart fundraising, I’m holding my first contest for the month of September. Every $10 donated to my Light the Night fundraising is an entry to win an iPod Touch 8GB. A winner will be chosen at random on October 1.

Other things to do: send out my nifty thank-you notes to last year’s donations (fashionably late, as usual with everything in my life), check out if there’s another Islip street fair this August, and pound the pavement for business sponsors.

Would you please consider donating?

I, like 99% of other Americans who played Mega Millions last night, did not win the $380M jackpot. Or even part of it.

But what the heck would I do with that much money? I can’t even decide what to do with $38 in my pocket sometimes.

Lisa Brewster

So, I thought about what I’d do (after making sure people around were taken care of properly):

1. Donate significant portions to my three favorite cancer charities: Leukemia & Lymphoma Society, Journey to the Cure, and I’m Too Young For This!
2. Donate a significant portion to Stony Brook University Cancer Center as a thank you for treating me
3. Establish scholarship funds for Fordham University and St. Mary School, so students who can’t afford to go to either school could have a chance like I did
4. Upgrade The Ram‘s office and technology, and upgrade the technology in Fordham’s Communication & Media Studies department as needed
5. Likely a pipe dream, but convince the Sisters of St. Joseph to reopen The Academy of St. Joseph and upgrade the school so it can properly compete with other private schools on Long Island
6. Buy an abandoned movie theater – preferably Islip – upgrade it, and name it “A Theater Near You” (which I thought was the name of every theater when I was three years old)
7. Buy a house, preferably with a pool and near a library
8. Make sure every food pantry on Long Island is well stocked
9. Build a shelter or transitional housing
10. Buy some commercial real estate
11. Open up my own bookstore
12. Travel the world

I’m sure I’ll think of other things. What would you do with that much money?

Today, CNN had an interesting iReport titled “Christmas Creep Invades NYC.” Of course, anyone who works and/or lives in New York City knows that this is nothing new. Weeks before Halloween, Duane Reade and other stores stocking (no pun intended) on Christmas decorations, wrapping paper, greeting cards, and other holiday fare. I even joined in the disgust in an article I wrote for the November 12, 2003 edition of Fordham University’s The Ram, which you can read here.

But for the past few years, Christmas has been speeding by. Sure, I attend a lot of secular holiday parties, put up decorations, and listen to Christmas straining from every radio within earshot. But the spirit, the wonder, and the fun has been quickly disappearing. I’ve been working too hard and am too wrapped up in life to enjoy it as I once did. Like watching It’s A Wonderful Life while drinking hot cocoa. Putting together our Christmas village, intensely focused on where every tree, resident, and skating pond are placed. Practicing all my Christmas songs on the piano so I can play for the family on Christmas Eve. Baking butter cookies and strufoli with rainbow sprinkles.

Even thought I’ve been dead-set against celebrating Christmas before Thanksgiving in the past, I’ve begun to give in. As soon as Halloween was over, I blasted Mariah Carey’s “All I Want For Christmas Is You” and Sergio Franchi’s The Heart of Christmas. I’ve been drooling over Pier 1 Imports’ latest catalog, itching to bring up the decoration boxes from the basement. I’ve already starting mapping out my route to visit all of New York City’s store windows after Thanksgiving weekend. I want to enjoy Christmas as much as possible this year. I want to be in the spirit again – not looking at the Christmas tree on the night of December 25 and saying, “What happened? Where did it go?”

Of course, I will not forget Thanksgiving. It’s important to give thanks for what we already have – and I do every day. But Christmas is an extension of that for me. My family has stopped buying gifts for each other, which has been a great step. We don’t need anything. So instead, I’m focusing on what I already have, and am sharing that with others. One of my favorite things to do during the Christmas season is participate in AREW Charitable Fund‘s Secret Santa program, which provides gifts for children in NYC’s  Women In Need shelters.

Last year was particularly poignant. When I was 10 years old, I asked Santa for a bicycle for Christmas. That was during a rough economic patch for my family – we certainly couldn’t afford one, let alone two for me and my sister. But that Christmas, there were two shiny new bikes underneath the Christmas tree, and it was one of the best presents I’d ever received. Thirteen years later, I learned who my Santa Claus was – my mom’s co-worker, who knew about our situation, and bought the bicycles for us. And last year, I was the Santa Claus for a three-year-old boy named David from Women In Need, who wanted a bicycle for Christmas. It was one of the best presents I’ve ever given.

So, don’t judge if I want to celebrate Christmas a little earlier this year. I want to extend the magic past those 40-or-so alloted days. Last year, Mom and I saw Sesame Street‘s Bob McGrath at Barnes & Noble in Lincoln Center, and he sang a song from one of my favorite movies as a kid, Christmas Eve on Sesame Street. This is what I want Christmas to feel like again:

In 2005, I was diagnosed with Non-Hodgkin’s lymphoma at the age of 22 (see: Living With Lymphoma). I had just graduated college, and received my first job offer and cancer diagnosis on the same day. Even though I couldn’t take the job, I was determined not to let it ruin my summer. I slyly asked my oncologist if I could attend a Journey concert (not mentioning that it would be two concerts, two days, two cities, and that I would be working on the band’s street team). He said yes, likely assuming that I’d be sitting down and nodding to the music. Yeah, right.

The first show, in Holmdel, NJ went off without a hitch (except for my funky dance moves, which really was spazzing from my post-Neulasta injection bone pain). Two nights later at Jones Beach, Long Island, I was determined to have even more fun. I danced wildly to “Don’t Stop Believin,’” ran to the stage to catch a flying drum stick, and even went backstage to meet the band. In the midst of all the excitement, the temporary port that was put in my arm for chemotherapy fell out. Oops.

Me and Journey lead singer Steve Augeri, the night my port fell out

The next day, I marched into the oncologist’s office with the snaking port in a gallon-sized Ziploc bag. The RN looked at me incredulously, and said, “Don’t you know that you are sick?”

I replied, “I’m not sick, I just have cancer.”

I wasn’t sick. Perhaps minorly inconvenienced. Cancer wasn’t, isn’t, and will never rule my life, and yesterday, I had the pleasure of meeting hundreds of young adult cancer survivors with the same kick-ass attitude at I’m Too Young For This! Cancer Foundation‘s third annual OMG! Cancer Summit for Young Adults at Pace University in New York City.

When I was originally diagnosed, I admit that I was scared. I had a somewhat rare form of lymphoma that mostly hits adults in their 50s and 60s, and didn’t know much about fighting cancer. I went to church the week after the diagnosis, where a woman came up to me and said, “I want you to meet my friend. She had cancer, and can tell you all about it.”

She walked me over to her friend, and introduced me. Apparently, her friend was not warned that she’d be talking to me. She put her nose up and said, “We don’t talk about that. It never happened.” Then she walked away. Walked away. She had a chance to do something good, but instead shunned me.

That was only the beginning of the isolation I felt as a young adult with cancer. Sure, I had family and friends to support me, but most didn’t understand what I was going through, except my friends Sheena and Tanya, who were also young. Most cancer survivors I met were much older, and didn’t have the prospects of a post-college life ahead of them. I sat down once with a social worker, who suggested I go on anti-depressants and see a psychiatrist even before I opened my mouth (and not realizing how okay I was with having cancer). And I was the only person under the age of 45 who attended my local  Look Good… Feel Better program. There weren’t many resources for cancer patients my age.

What I learned yesterday: there are over a million young adult survivors out there like me. Seventy thousand young adults aged 15-40 are diagnosed with cancer each year, yet our survival rates and quality of life has not increased in the past 30 years – 10,000 die each year, which according to i[2]y’s website is seven times greater than those who die of childhood cancer (check out i[2]y’s sizzle video for more stats). Not cool.

Despite the odds stacked against many of us, I did not meet one Debbie Downer in that room. We’re not sick, we just have cancer. Even a thirtysomething woman who is scheduled for a radical double mastectomy in two weeks had one of the biggest smiles in the room. Lymphoma, leukemia, cervical cancer, brain cancer, testicular cancer, uterine cancer, sarcoma, melanoma, nasopharyngeal carcinoma – those weren’t even half of the cancers I encountered. We shared similar stories of being misdiagnosed, the fun side effects, our uncertainties, and our hopes. Regardless of our different diagnoses, we were all there for a common cause: to collaborate, communicate, and get the message out there that the young adult cancer community will no longer be ignored.

The summit included panel discussions on oncofertility, employment and insurance, social media advocacy (neat video they showed), sex and relationships, and survivorship. There were also keynotes by Stand Up 2 Cancer‘s Diane Balma and Survivor: Africa winner Ethan Zohn (check out his video on cancer filmed for People magazine). One of my favorite quotes came from testicular cancer survivor Matthew Imerman, who said we should be called cancer crushers rather than survivors.

After I went back to work in 2006, I lost touch with my cancer self and a lot of what I promised to do for others undergoing treatment, including volunteering. Yesterday inspired me to return to the cause and not become the person who shunned me when I needed help. When I got home, I signed up for Imerman Angels as a survivior. I’m also walking in the Leukemia & Lymphoma Society’s Light the Night Walk for the fourth year ( join me October 23 at Citibank Park on Long Island, or donate).

If you couldn’t attend the summit, it was taped – you can view the video here.

Other Recommended Links:

• i[2]y: Website | Twitter | Facebook | The Stupid Cancer Show
• Oncofertility: My Oncofertililty | Fertile Hope
• Employment and Insurance: Cancer Legal Resource Center | CancerCare | Cancer and Careers
• Social Media: Mashable
• Support: Tamika & Friends | Life With Cancer | Imerman Angels | The Yellow Umbrella | First Descent
• Times Square’s Naked Cowboy gives cancer the finger (via i[2]y founder Matthew Zachary)

Last night was the Leukemia & Lymphoma Society’s Light the Night. It was the first one I participated in since being diagnosed with lymphoma… last year I was too weak to walk even a block, let alone a mile. I had a whole bunch of friends walk with me, and together, we raised about $2,600 for the society. It ended with the most amazing fireworks I have ever seen.

We also wore team t-shirts with a jack-o-lantern on the front and “Squash Lymphoma” on the back, harking back to last Halloween, when I had painted my chemo-bald head orange, glued on a stem to the top, and went to my oncology appointment dressed up as pumpkin.

Don't I make a great pumpkin?

I had gotten a fever that Halloween, all though I was feeling fine. However, having a fever while I had cancer meant one thing – a blood transfusion. Two pints, to be exact. While I was being transfused in the outpatient hematology center, I met a girl named Sara. She was a few years older than me, but had just gotten diagnosed with the same exact lymphoma. She was also starting her chemotherapy treatments just as I was finishing mine.

We talked for a while and I told her my story. We also exchanged contact information, and I told her to call me if she had any questions or needed to vent, because I knew what she was going through. We saw each other time to time in the hospital, but around December, I didn’t see her anymore. I e-mailed her, but never received a response back. I let it go, figuring she didn’t want to talk – sometimes you just want to be left alone when you’re sick. About a month after, I asked one of the nurses how she was doing, and she told me that she had stopped going to that particular hospital. I never heard from her again.

I always wondered what happened to Sara. Last night, I found out. Before the walk started, I was walking by the memory banner, where people write names of people who had died of leukemia and lymphoma. I saw her name. I must have made a face, because one of the volunteers asked if I was all right. I burst out crying and blubbered something about knowing her and that she had the same exact cancer as me. The volunteer took my hand and said, “Honey, sometimes people do die of this. You were lucky. You’re a survivor.”

All the feelings of invincibility I once had had just washed away at that point. It suddenly made cancer very, very real to me. People could die from this. Why didn’t it feel this real when I was actually sick? It felt like a punch to the gut.

Yes, I am lucky. I went into remission quickly and kicked cancer’s ass. I’m also lucky that almost all of the people close to me who’ve had cancer also survived. I always knew I was going to be all right. And since I knew I was going to be all right, it just felt like everyone else was going to be all right, as well.

As we walked last night, I saw Sara’s family. I ran over to them to give my condolences, and her mother just hugged me tight and cried.

I don’t even know what to think and feel anymore. I just want to go outside, scream at the top of my lungs and make all the sadness and anger go away. I want to stop thinking of what could have been, what should have been, and why it always happens to good people. This is the first time I’ve gotten exteremely upset over this. CANCER, YOU %$#!ING SUCK.

Rest in peace, Sara.