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.
It’s Not the End of the World
Published January 12, 2012 | 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.
Helping Beyond the Grave
Published January 4, 2012 | A Writer’s Book of Days (01/04) – “A Year After Your Death…”
My remains are finally delivered back to my family after a prestigious university uses what it can of my body for research purposes.
As a former cancer patient and survivor, I was a goldmine of information for scientists looking for a environmental link between pesticides used on Long Island in the 1980s and 1990s and instances of blood cancers like Non-Hodgkins lymphoma.
As a child, I would be playing outside and mosquito sprayers would drive down the street, helping to prevent another summer outbreak. (In the 1980s, there were no warnings to stay inside.) Some people suggested it might have been residue from the dust after the Twin Towers collapsed on 9/11. The particles had been partially measure in the Bronx, where I was a freshman at college. A few other students were rumored to have cancer, but I never met them.
I became paranoid in 2005, the year my cancer was discovered, I underwent treatment, and went into remission. I stopped dying my hair. Using perfumes. Eating fast food. The constant restrictions on myself was difficult, and I realized I may never know what caused my cancer.
But that wouldn’t stop me from trying to help others. In my early ’30s, when I created my first will, I went through a long process of donating my body to science if I died. My family and friends could just have a small memorial service if they wanted, but I couldn’t justify the hoopla and cost of a traditional funeral when there were still people unexpectedly getting cancer and not knowing why.
A year after my death, there will plenty of evidence that there are environmental factors connected to blood cancer. Reform will be made on the governmental and business side. Blood cancer diagnoses and death will drop greatly. Although small, I’ve done my part.
The 31st Day of Christmas – For Auld Lang Syne
Published December 31, 2011 | I can’t believe 2011 is nearly over. It seems like only yesterday we were sitting in my best friends’ living room watching Dick Clark’s New Year’s Rockin’ Eve and waiting to see if Y2K would make the world blow up. Even worse, I remember when Prince’s (the artist formerly known as the Artist Formerly Known as Prince?) “1999″ was so far into the future.
Overall, 2011 was a decent year.
- Although January saw our car Zephyr’s first accident, it was repaired to even better condition that when Lexcie and I first purchased it. We traveled to many places in that car, including New England and down the East Coast to Virginia to see my friends Chris and Nicole get married. We then traveled to West Virginia, a state I’ve never been to before. I wish I knew how many miles we put on the car this year. Over 3,000, at least.
- Our travels also took us to Great Britain, Scotland, and Wales for 10 days in October, the first time I’ve ever been to Europe. It was a fantastic trip.
- I was promoted to an editorial position at my job.
- Healthwise, I reached my sixth year of being cancer free – each day is a celebration! But additional celebrating at the I’m Too Young for This! Cancer Foundation‘s (i[2]y) OMG Summit in NYC in April sent me in for a battery of tests after I discovered I had a strange reaction to drinking alcohol (so my memories of the booze cruise weren’t exactly as fun as everyone else’s). After eight months or so, arrows are pointing to a potential gallbladder issue, but I don’t find out until January 2. My body really needs to give me a break!
- I met a whole bunch of new friends this year, particularly through i[2]y, my lymphoma support group on Facebook, Long Island Tweetup, and 140ConfLI.
- I accomplished plenty of items from my 101 in 1,001 list.
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?