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 (01/04) – “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.

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.

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?

Five years ago, I was diagnosed with primary mediastinal diffuse large B-Cell lymphoma, a subset of Non-Hodgkins lymphoma, a blood cancer (background: Living With Lymphoma). But with the help of my family, friends, and a wonderful team of oncologists and nurses at Stony Brook University Medical Center, I went into remission on September 2, 2005. After six rounds of chemotherapy, I’m now celebrating my fifth year of being cancer-free.

But others aren’t as lucky. Each year since 2006, I’ve been participating in the Leukemia & Lymphoma Society’s Light The Night Walk, which is held every October at Suffolk County Ball Park in Central Islip. It’s a nationwide event to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.

Each walker carries an illuminated balloon—white for survivors, red for those who support them, and gold for remembrance of a loved one lost to blood cancer. There are still too many gold balloons—and I am asking for your support in helping me raise money so we see even more white balloons at future Light The Night events.

To celebrate my fifth year of remission, I have set a goal to raise $5,000 before the October 23rd walk. And as an incentive to business owners, every business that donates $50 or more will receive special recognition on my Light The Night fundraising page, my website, and Twitter — as well as have its logo prominently displayed on a banner that will be carried by team Squash Lymphoma on October 23.

Please help me help other blood cancer patients reach the same milestone that I have—every donation, no matter how small, makes a difference. If you wish to donate, please go to my fundraising page, where you can make your donation securely by credit card. I also accept check donations made out to The Leukemia & Lymphoma Society, mailed to Amanda Marsh, PO Box 406, Islip, NY 11751.

Please feel free to e-mail me with questions.

Last Saturday, I held a BBQ to celebrate five years’ remission from Non-Hodgkins Lymphoma. Overall, it was a wonderful day – except for one thing. The beer keg.

In hindsight, the weekend before Labor Day was probably not the best one to schedule a party – a bunch of my friends and family couldn’t come because of prior engagements. Everyone seemed to schedule a summer’s-last-hurrah on Saturday. When I ordered and paid for the beer keg a week earlier, I’d been expecting a certain amount of people – many of them beer drinkers. As the week progressed, I did receive some RSVP cancellations – and mostly from the beer drinkers. (Maybe it was the Miller Lite that scared them away. I don’t drink beer, so I asked my brother what I should buy.)

I decided to go along with the keg anyways, convinced my party would drink my money’s worth had I purchased bottles. As people trickled in and out, I suggested they drink some beer. As the night progressed, “suggested” slightly turned into “ordered.” I began posting  (rather, begging) on Facebook, offering free beer and food. I just wanted the keg to go away – I knew that keeping it cold over the next few days was going to be a big chore. No one grabbed at the ice-cold opportunity. Seriously, was it the Miller Lite? By the end of the party, the keg was still about 75% full, despite the 60 or so attendees. I dumped the last of my freezer’s ice tray in the big bucket, filled it with water, and called it a night.

Day Two

Sunday, my sister told me her boyfriend’s brother was having a BBQ later that day. Perfect! I could dump the keg on him! He gladly accepted, and the beer keg made the quarter-mile trip down the road to his house. I could forget about icing the 75%-full beer keg for an entire day. Life was grand.

Day Three

I woke up bright and early, with visions of an empty beer keg in my dreams. I dialed my sister’s number. She picked up on the seventh ring.

“So, how’s the beer keg?” I asked.

“No one really drank the beer,” she replied.

%$#@! I knew it. The responsibility was back on me. I drove to his house to pick up the still-heavy keg, and we heaved the metal canister into the back of Mom’s Toyota Sienna. Now what to do? Quite a few friends on Facebook had already been asking what happened to the keg.

I thought for a minute. Beer bread. Beer-battered shrimp. Beer and cheese soup. Yes, I can cook with it!  But storing the keg would be a problem. I then decided it would be easier to keep the beer cool in the empty soda bottles from the party (yes, the drink that everyone drained instead of the keg. We had to make three 7-Eleven soda runs).

But I’d be damned if I had to drag that keg out of the car again. No worries. I carried nine empty soda bottles to the end of the driveway, unhatched the back door, and tapped the keg right in the back of the minivan.

Or, attempted to tap.

As I was tapping the keg, my hand slipped, and I accidentally pushed the lever down. Which sent a stream of foamy Miller Lite straight into my eyes, temporarily blinding me. I began flailing and screaming, further sending a geyser straight towards the car ceiling, distributing the beer to every last square inch of the back of the car. Drip, drip, drip. Not only was the car’s interior covered in beer, but I was drenched from head to toe. Even my socks.

Creak. Creak. Creak. A older man slowly peddled to the end of my driveway and asked if I needed help finishing that keg. I wanted to knock him off his bike. By then, two hornets started swarming around me. I was covered in beer and was wearing a brightly-colored flowered shirt. I might as well have been wearing a giant bullseye on my back with the words STING ME. Did I mention that I have a severe allergy to hornets?

Mom, who’d been watering plants in the back yard, heard my screams and came to the front yard.

Did I also mention that Mom had just gotten the car detailed at the Toyota dealership last week?

The meticulous polishing gave way to puddling, golden liquid. Boy, was I in trouble. But just one look at my pathetic, dripping body holding an unattached tap, she erupted in laughter. She grabbed some towels and began to clean the inside of the car as I finally tapped the keg. Luckily, the Toyota dealership did a bad job of rinsing the shampoo out of the carpets, so we even had some nice soap to work with.

After I filled the nine bottles, I took a long shower, changed into fresh clothes, and returned the keg to Islip Beer Distributor. I never wanted to see that keg again. Didn’t even give it a goodbye – just grabbed my $100 deposit and ran.

Next time I’ll just stick to good ol’ Sam Adams in a bottle. On the bright side, I now have shiny, manageable hair. Who needs Body On Tap?

Well, perhaps not the Rolling Stone, but Newsday‘s good enough for me. I was interviewed for the cover story “Their New Lifeline,” which talks about Long Islanders with illnesses and how they’ve used the Internet to share their experiences. The story came out great, and there’s even a full-page photo of me on page A4. If you’re a Newsday subscriber, you can read the story here (with a sidebar on social media). I put a request in for a reprint, so hopefully I’ll have something to share with those who aren’t subscribed.

I was also taped along with a few others for a short video clip:

Exciting!

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)

It’s been quite a busy weekend so far: Friday was the Light the Night Walk; yesterday was spent at South Street Seaport and meeting some of my Journey-fan friends for dinner and an Evolution concert; and today was spent sleeping way too late, bowling and eating frozen tomatoes.

The Light the Night Walk, which supports the Leukemia & Lymphoma Society, was even bigger that last year, although Team Squash Lymphoma was a few people smaller. This year, we raised a little over $500, which is still a decent amount, considering I got a late start into fundraising. In addition to my white balloon, I received a “SURVIVOR” shirt this year, which I thought was quite nice of them.

As usual, the survivors and those under treatment hit the baseball field of Citibank Park before the walk started. There were double the amount of survivors than last year, which could only be a good thing. As I left the field, I ran into Betty and Regina, two of my nurses at Stony Brook Medical Center (Betty was the one who gave me my first high ever, albeit from Benadryl). It was so great to see them – ever since my oncologist moved, I haven’t been back to the BMT ward, where I began my treatment in July 2005. The walk itself was a lot of fun; it seemed a bit longer than last year, then ended with a spectacular Grucci fireworks show.

I don’t know if it were the chemicals emitted from the fireworks or what, but that night, I had a dream I turned Lexcie into a labrador retriever puppy and I had to train him to sit and lay down.

On Saturday, Lexcie and I drove to Massapeeeeequa and took the LIRR from there, as there would be more trains coming home later that night. Our first stop was South Street Seaport, where hot dogs got consistently more expensive as we walked west along South Street. We went on a tour of the USCGC Eagle (WIX-327), which was interesting, although we didn’t get to see much of the crew quarters. Then, we went in search of fish and chips, which were $14 on the pier, but $5 if you went to the food court in the pier’s shopping mall. Lexcie called it, “New York’s knock off of San Francisco’s Fishermans Wharf” – basically, same tourist trap.

My favorite part of the seaport was visiting Mariposa, the butterfly gallery. (This page offers a better picture of the store.) Mom has a few from the collection, but when I’m rich and famous, I want the $7,000 wall panels.

The next stop was little Italy, where we were going to meet my friends for dinner. So, we were walking up Fulton Street towards the IRT when I saw hot dogs for $1. And behind the cart was a quintessential New York hot dog man – not Middle Eastern, but Italian and wearing an apron. I went over and asked if he was always at that corner, because it was a pretty good price for a hot dog in that area. His answer, and the following 15 minutes, had nothing to do with hot dogs whatsoever:

Hot Dog Man: Where do you live?
Me: New York.
Hot Dog Man: Where in New York?
Me: Long Island.
Hot Dog Man: <frustrated> Where on Long Island? It’s not like I’m going to come rob your house or something.
Me: Islip.
Hot Dog Man: Well, let me tell you – I used to live in Freeport and I was able to keep my doors unlocked, but now, people will steal from you and nothing’s the same as it ever was…

And then he went on and on about how Long Island has changed, Italians, Irish, carpet baggers, lower Manhattan, the Mafia, how his uncle’s barber shop on Fulton Street was money drop for the Mob, the police and various other subjects until Lexcie was finally able to cut him off and tell him we had somewhere to go. Poor guy – probably doesn’t have people to listen to him, but it was getting to be a bit much.

We met the Journey gang at La Mela Restaurant, which is probably best known for its family-style meals. However, family style costs about $30 per person, so we quickly nixed that idea. Lexcie and I decided to split a chicken marsala dish, since we had eaten the fish and chips earlier. The waiter gave us an attitude and said, “You know that’s a small dish, right?” Turns out it wasn’t such a small dish – they just wanted us to order more. The service was pretty bad, on top of it. We had to ask for bread, they failed to tell us that we were paying for wine by the glass and not the bottle and it took a while to get anyone’s attention. The food was the restaurant’s only saving grace. However, it was nice to catch up with all my friends, even though we were sitting a bit tightly in the back.

La Mela also turned out to be pretty expensive. Coffee alone was $3, so Lexcie and I decided to go have dessert in Chinatown, which is infinitely cheaper. Our friend Chris came with us, but as we were walking up Mulberry Street, we found a street vendor selling gelato, tiramisu and cannolis at a decent price. Lex ordered a chocolate cannoli for $4 and me, a tiramisu for $5. So, we walked as we ate, and Lexcie discovered why it was only $4 – the cannoli cream had only been squirted at the ends of the shell, and the cannoli was empty in the middle. And someone forgot to put sugar in the whipped cream of my tiramisu, so it tasted like butter. Of course, the sugar that was supposed to go in the whipped cream went into the tiramisu itself, which was overly sweet.

After a quick stop at Starbucks, where an old Chinese lady stole my chair, we headed of to The Canal Room for the Evolution show. Had I done my homework before the show, I may have thought twice about buying tickets – it was pretty small. And considering it had both Evolution fans and fans of the following Dave Matthews tribute act, it was pretty tight. The sound system wasn’t all that great, and the sound system overpowered lead singer Hugo’s vocals. Halfway through the set, I saw Lexcie was getting restless, but we had promised Chris we would wait for her. At least the West Coast Evolution show had seats.

I found out during the show that there’s a good chance that Arnel Pineda, lead singer of The Zoo, was hired as Journey’s new lead singer. Apparently, this news has been around Melodic Rock for a while, but realized that I don’t give much of a flying duck about Journey’s drama anymore. But if you want an interesting read, lead singer frontrunner Jeremey Hunsicker started a blog on how he was in (and quickly out) and Jeff Scott Soto posted his reaction on Melodic Rock’s forums.

By the end of the night, we were pretty thirsty (beers were $7!) and deaf, but we made it in time for the 12:38 a.m. Babylon train home. When we got off at Massapequa, we saw a young guy who apparently missed the last westbound train – and he was screaming, carrying on and punching brick walls because the next train was in three hours. “I can’t believe I missed the $#@!ing train!” he screamed. “How the $#@! could this happen to me!” We were pretty amused, but decided to leave before he went downstairs and started smashing cars or something. Tempers, tempers.

Lexcie and I were so wiped out that we slept until 1 p.m. today. Lexcie so kindly made an omelette for breakfast (lunch?), but in his words, “There was a lack of better mousetrap, so one omelete ended up being a fractionated omelete that we were gonna use for dinner. There was like an abundance of fude all the time.” In English: he attempted to make an omelette, but since we did not have a proper utensil to flip the eggs, it wound up becoming an egg-ham-peas-and-mushroom scramble. The second attempt resulted in a better omelette, so the scramble was put in a Tupperware to be used later in cooking dinner. Because of the way we cook, there are always so many leftovers.

We later went bowling, where Lexcie cheated and used two balls at once in order to get a strike. We fancied some ice cream afterwards, so we went to the Friendly’s in East Islip, where I ordered a garden salad and ice-cream sundae, and he a Fribble and cup of coffee. Well, lots of things went wrong tonight. First, my sundae came before my salad. Second, my salad was too cold and the tomatoes went crunch – they were frozen. Third, the Fribble wasn’t thick enough. Fourth, Lexcie’s coffee never came – they were “making a fresh pot” for 20 minutes, and finally decided to leave without the coffee, which still wasn’t finished.

Perhaps we should stay away from restaurants for a while..