About Amanda
I’m a disgruntled LIRR commuter by morning, real estate journalist by day, insomniac by night, and cancer butt-kicker for life.
Where To Find Me
Why You Should Care About Young Adult Cancer
Published April 3, 2012 | 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.
One Man’s Trash is Another Amanda’s Treasure
Published January 15, 2012 | 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.
The Road Less Traveled
Published January 11, 2012 | 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.
The 6th Day of Christmas – Secret Santa
Published December 6, 2011 | 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.
Help Me Squash Lymphoma!
Published September 1, 2011 | 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?