Young Adult Cancer Survivors Conference: April 5, 2014

The Leukemia & Lymphoma Society is hosting a free conference for young adult cancer survivors and their support networks on Saturday, April 5. (We'd love to see you there!)

I love the theme. Young adults definitely travel in the fast lane, and a cancer diagnosis makes it very difficult to keep traveling at those same high speeds. My speech at the conference will be on this topic. Hopefully I'll think of a few good metaphors, like the time Rob and I were driving from WI to NYC, and I suddenly noticed that we were nearing Ann Arbor, Michigan...

Creative Writing Workshop Recap

The creative writing workshop, which I led at the John Theurer Cancer Center, went well. One of the "ground rules" for the group setting was that we keep the session confidential. This helps participants to feel safe and secure while sharing their work and emotions. So I won't be sharing my take on the session, but I was very pleased to find out that two of the participants gave the cancer center permission to post on its blog essays they wrote during the evening.

For the first experience, we taped print-outs of road signs on the walls and asked the group to free-write about their cancer journey as it relates to one or more of the signs. Two of the survivors' resulting work can be read at the links below:

Road Signs on My Journey Through Cancer

Signs

For the exercise, I chose to write about a falling rocks caution sign. My 10-minute free-write is below:

The mesh netting holds back the rock, jutting from the face of the cliffs, from falling onto the cars driving through the narrow passageway. In the dim light of the headlights, I can just make out the snow, capping the rock outcroppings of this mountain near Vail, Colorado. I'm afraid these boulders will fall, crushing our car. The sign warns it can happen, despite the metal latticework barriers. The mountainside will crumble, just as our car passes by it. Bad luck. That's all it will be. I should never have gotten leukemia. I should have given birth to a sweet girl named Lily Elizabeth on August 14, 2011. Her skin would have been soft, and pale. Thick dark hair, brushing my cheek as we snuggle. New baby smell. Instead, the chemical smell of the disinfectant soap in the bathroom of my solitary room at the hospital lingers in my nose. How can I trust that the rocks won't fall when they've already fallen once? If they hit our car, I will feel the crushing bone pain all over again, as bad as it had been after the Neupogen shots. Pain like my bones are breaking, like someone has shattered my knee caps. The probability of latent side effects from the treatments can't be that different from the chances of those rocks falling. But I cringe as we pass through the gap bored through the mountain, trying to make out the the mesh netting in the darkness. I'm so busy watching the rock walls that I'm not looking ahead, toward our family vacation. Nor am I listening to what my daughter is trying to tell me from her car seat in the back.

The last two lines of this free-write were a surprise revelation, and serve as a point I need to keep reminding myself of any time I get into one of my downward anxiety spirals. I went into the session viewing it as a way to help other survivors, and left the event surprised by how much I'd gotten out of it as well.

If you're going through a tough time in your life, trying searching on the web for road sign images, and spend ten minutes writing about one or more. You may also be surprised by the result.

More Magazine 2013 Beauty Search: Prize Money Proceeds

When the fashion editor of More Magazine called to inform me that I'd won the 30's age division of the 2013 More Magazine Beauty Search, I was thrilled BECAUSE the prize money enabled me to make the donations I've described below. These three organizations provided my family and me with much needed support during the darkest days following my leukemia diagnosis. I'm so happy to be giving back to them. 

(In terms of the October edition of the magazine, featuring the winners, it hit news stands today. I'll be posting about my experience at the photo shoot, with some pics, sometime this weekend.) 

$1,000 to First Descents

A Bit About the Organization: First Descents offers young adult cancer fighters and survivors (ages 18 to 39) a free week-long outdoor adventure experience designed to enable them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same. (Learn more at First Descents)

To Make a Donation or Join our Team: Team Life's a Beach First Descents Fundraising Page

$500 to the Leukemia & Lymphoma Society

A Bit About the Organization: The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. LLS is the world's largest voluntary health agency dedicated to blood cancer. LLS funds lifesaving blood cancer research around the world and provides free information and support services.(Learn more at The Leukemia & Lymphoma Society)

To Make a Donation or Join our Team: Team Life's a Beach Light the Night Fundraising Page

$500 to Stupid Cancer

A Bit About the Organization: This non-profit organization empowers young adults affected by cancer through innovative and award-winning programs and services. It is the nation's largest support community for this under-served population and serves as a bullhorn for the young adult cancer movement. (Learn more at Stupid Cancer)

To Make a Donation: Click Here


Related Posts:

More Magazine 2013 Beauty Search Photo Shoot: Behind the Scenes

More Magazine 2013 Beauty Search Finalist

The Leukemia & Lymphoma Society's Light the Night Campaign

This year, our family will just be participating in the NYC Light the Night event on Wednesday, September 25. My brother, Jeff, and his family will be joining us from Wisconsin! Unfortunately, we won't be able to do the NJ walk this year, but plan to next year.

For info on how to get involved in our Light the Night fundraising campaign, please visit: Light the Night - Team Life's a Beach










Also, we've added a special little girl to our list of those we walk to honor. Her name is Sally. She was diagnosed with acute lymphoblastic leukemia (ALL) this past summer, and she turned one years old this week. You can read about her battle at SweetSallySunshine.

Broadway Lights the Night - Monday, June 17th at 7PM

 

On Monday June 17th at the Morris Museum in Morristown NJ, Broadway Lights the Night is putting on a show to benefit the Leukemia & Lymphoma Society at 7pm in Morristown, New Jersey. The doors open at 6pm, and the show begins at 7pm. Featured performances include cast members from Broadway’s Jersey Boys, Wicked, Rent and more!

More Magazine 2013 Beauty Search Finalist

This past April, I did something I've never done before: entered a beauty contest.

In my race bag for the More Magazine's / Fitness Magazine's Half-marathon in NYC, there was a postcard advertising the contest. Entry requirements included one photo and an essay answering the question: "What makes you beautiful, now more than ever?" Since I love writing, the challenge of the essay appealed to me, and the question was a softball. In my first weeks post leukemia diagnosis, I couldn't have been uglier. Two years later, I'm so much healthier!

So I wrote my essay, picked a photograph from the ones taken by Magique Studios, and applied. And then I perused all the other entries, and was awed and inspired by all the amazing women. This is how I met my new friend, Elizabeth Grant, whose writings about her faith in God while battling stage IV breast cancer are moving and comforting. Meeting other entrants via social media, and being inspired by them, was a prize in and of itself.

Since I felt so humbled by the other women's stories, it never occurred to me that I might be a finalist, and so was very surprised when I received the notice. Out of the approximately 1500 entries, I'm one of 20 finalists (5 in each category, for which there will be one winner: 30s, 40s, 50s, and 60+). The judging criteria is: "inspirational quality of story (50%) and appearance, photogenic quality and vitality depicted by the Contest Entry photo (50%)."

I had to submit five additional photographs and will find out by June 3rd if I've won. The grand prize is $5,000, a three-night stay in NYC for me and a guest, a hair and beauty session, photo shoot and opportunity to be featured in a future issue of More Magazine. A sweet package for sure. If in the off-chance I do win, I plan to donate a portion of the cash to my favorite nonprofits: the Leukemia & Lymphoma Society, First Descents, Stupid Cancer, and the University of Minnesota Foundation.

I have only a 20% chance of winning my age group, so I'm assuming I won't. Why so pessimistic? Because I've been trying really hard to reduce my anxieties about relapsing and latent side-effects by convincing myself that if something has less than a 50% probability, it's unlikely to happen. I can't get excited about 20% odds in one scenario, only to write them off under different circumstances. (Oh the mind games a cancer survivor plays...)

If you'd like to see my entry in the contest: click here.

The pics I sent as follow-up for the final judging are below:

Team Life's a Beach's Final Fundraising Tally...

2012 Total Raised: $7,255!!!

Thank you to all who've become involved with Team Life's a Beach's efforts to raise funds and awareness via the Leukemia & Lymphoma Society's Light the Night Walks. LLS funds blood cancer research and patient/family support.

Light the Night New York City - Pics

Thank you to those who walked with us or contributed to the New York City Light the Night event! Below are some pics.

 

But first, an update on the T-shirts for all who've been involved with Team Life's a Beach this year: I'm in the final stages of working with a logo designer and am really excited with how it's looking. Shortly, I will be asking for T-shirt sizes. Please feel free to send me a note with your size.

Thanks!

 

Light the Night - Milwaukee and Minneapolis

Team Life's a Beach has now made its first two stops - Milwaukee and Minneapolis.

Thank you to all those who contributed. The Milwaukee team, led by my two brothers, raised almost $2,000 (thank you to our wonderful, generous friends and family).

Jeff had been planning to bring his nice camera, to capture some great images of the illuminated balloons, but heavy rain had been in the forecast. Instead, the camera phone pic below captures the spirit of the event perfectly.

Veteran's Park, Milwaukee - Jeff & Elise

 

For the Minneapolis event, my mother-in-law rounded up a group of 12 friends to serve as volunteers. Volunteers were in short supply, so DiAnne and her friends' involvement was much appreciated by the Leukemia & Lymphoma Society and by me. And thank you to Tony for fundraising! Thank you everyone! 

 

Target Field, Minneapolis - DiAnne and her crew of friends

Next stop - New York City on October 3rd.

DiAnne mentioned that one of the speaker's at the Minneapolis event was a mother whose grown son had died from the same gene mutation I have (APL). At times, it is difficult to be involved with LLS's campaign because it provides reminders of our reality. But it also provides reminders of the hope. An extra reality check is well worth all the good that can come from helping fund this nonprofit that provides patient support and grants for cutting-edge research.

Life's a Beach Team Home Page

Life's a Beach pages by walk site:
(On the day of the walk, registration begins at 5:30pm and the walk begins at 7:00pm.)

October 3 - New York, NY (Basketball City)

October 20 - Verona, NJ (Verona Park)

October 27, Woodland Hills, CA (Warner Center Park)

Light the Night - Movie Tix Raffle Winner 5

When I arrived home last night at 9:30 from a meeting, the first thing Katelyn said to me was, "We have to pick a name!"

And that name was... Douglas A. Congrats! You'll be receiving your movie ticket codes shortly. And thank you for your contribution to the Leukemia & Lymphoma Society!

We are having so much fun drawing the names that we might have to come up with some more prizes in the coming weeks.

Light the Night - Movie Tix Raffle Winner 3

And the winner of today's pair of movie tix... Patrick L., who donated to my brother, Jeff, for the Wisconsin walk.
 

Light the Night - Movie Tix Raffle Winners 1 & 2

The first two winners of a pair of movie tix are...

I have five more pairs of tix to raffle off as a thank you to those who are supporting Team Life's a Beach in the Leukemia & Lymphoma Society's Light the Night Walks. Each evening next Monday through Friday, we will be drawing another winner. (Talk about a "win-win," as Michael Scott used to say on The Office.)

More on the good news front, my dear friend, Sarah, who's a "creative" at an advertising agency is designing the Life's a Beach logo for the T-shirts. She has tremendous talent, and I can't wait to see it. All who walk and/or donate will receive a team T-shirt.

And... more good news... Sheila's and Lauren's Southern Cali walk site is now up:
October 27, Woodland Hills, CA (Warner Center Park)

In retrospect, this post is more of a win-win-win-win. Have a great weekend!

Light the Night 2012: Team Life's a Beach

The Leukemia & Lymphoma Society's annual Light the Night campaign is approaching. Events take place across the country to honor survivors and the memories of loved ones lost. Walkers carry illuminated balloons-- white for survivor, red for supporter, and gold for in memorial.

For anyone who would like to join the Life's a Beach Team, please click on the appropriate link below.

We greatly appreciate the support that's been given already this year. It means a lot to our family, and to all the patients and their families whom it will benefit. To show our appreciation, we will be raffling off movie tickets (# TBD) in early September. All who have donated to our team this year or signed up for the walk will have their names entered.*

Life's a Beach Team Home Page

Life's a Beach pages by walk site:
(On the day of the walk, registration begins at 5:30pm and the walk begins at 7:00pm.)

September 13 - Milwaukee, WI (Veteran's Park)

September 23 - Minneapolis, MN (Target Field)

October 3 - New York, NY (Basketball City)

October 20 - Verona, NJ (Verona Park)

October 27, Woodland Hills, CA (Warner Center Park)

* Unlike your typical big contest, family members will be eligible, since Katelyn, who can't read, will be drawing the names.

North Face Endurance Challenge - Race Wrap-Up

50 miles (and 1K) later, Ryan and Katelyn have great accomplishments under their belts and raised over $1500 for blood cancer research and patient services. In the early days of my disease the Leukemia and Lymphoma Society helped my family and me learn about AML and how to navigate the treatment process. Knowledge made my family feel more in control during the tumultous period. Thank you to all those who are helping us further LLS's critical work.

Since there were no sports commentators present at the race, I did my best:

At the finish line festival, while Katelyn and I waited for Ryan to appear from the woods

Shelley: Do you see Daddy yet?
Katelyn: No, he's late to the finish line.

Shelley: Do you think he's close?
Katelyn: No, he's probably still on the other mountain, way over there.

After Katelyn's 1k Karno Kid's Race

Shelley: Where did we run for your race?
Katelyn: Up a mountain. We walked.

Shelley: Who did you see during your race?
Katelyn: Light Buzzyear. I hugged Elmo, but not Big Bird. He was taking pictures with other children. A man took my picture at the finish line.

When we met Ryan for his final 500 yards along the trail

Shelley: How do you feel?
Ryan: [silence]

Shelley: How would you describe the race?
Ryan: Masochistic

Shelley: What did you think about during the past 13 hours?
Ryan: You, and how this is nothing compared to what you went through.
Shelley: [All choked up] Very sweet, but I'm not sure I agree.

Race Day Pics

Katelyn running to give Ryan a hug, half a mile from the end of the 50 mile course.  

Race Day

This morning, Ryan left at 3:50AM for the 5:00AM start to the 50 mile endurance challenge.
Katelyn and I are about to leave to watch him cross the finish line and to enjoy the festival.

While perusing the event site website, we noticed there is a Karna Kids 1K run at 4:00PM. After watching the promotional video, Katelyn decided she's in. All morning, she's been practicing her track start, and she's now wearing her fast shoes and her fundraiser T-shirt.

Good luck to Ryan in his last miles, and to Katelyn at 4PM! And thank you so much to those who made a donation to the Leukemia & Lymphoma Society!

Donate to the Leukemia & Lymphoma Society: Team Life's a Beach

50 Miles for 50 Days

One year ago, on May 5^th, 2011, we cheered my wife's accomplishment of pushing herself to walk 14 laps around the nurse's station outside her hospital room. Nine days later, she came home to us. On May 5th, 2012, I plan to push myself in her honor.

Shelley's story started with a routine, 20 week ultrasound for our daughter, Lily.  The checkup kicked off a series of events that led to her diagnosis of and treatment for acute myelogenous leukemia (AML).  The grueling hospital stay entailed chemotherapy, blood transfusions, hundreds of needle pricks, fevers, mouth sores, and intense nausea.  That’s the short list.  The only time she left her room for an extended period of time was to spend Easter Weekend in the Intensive Care Unit to battle bleeding in her lungs and a blood clot in her liver. 

We said goodbye to Lily during that time. 

Nearly 50 days passed between the ultrasound and her departure from the hospital.  During this time, Shelley endured each blood and platelet transfusion, needle prick, and treatment protocol with the steady calm of a person looking beyond the hospital bed and the oncology floor with the thought, “I will get through this.”  Maybe her attitude came from the years of mental and physical conditioning for competitive swimming.  Maybe it was a combination of her inherent character and the invisible hand of her parents that taught her to never give up.  Likely, a combination of many factors built her deep resolve. 

Her fight during her hospital stay--and now during her maintenance treatments--is inspirational. 

On May 5^th, nearly one year from my wife's departure from the hospital, I will participate in the 50 Mile Northface Endurance Challenge ultramarathon at Bear Mountain, NY, to both raise awareness for Leukemia and raise money for research.

50 miles: nearly one mile for each day before Shelley achieved remission status.

May 5^th: nearly one year from the day she left the hospital. 

Although the race is called an “endurance challenge,” the endurance required to complete the distance is immeasurably small when compared to the endurance of body and spirit my wife exhibited during that time and the treatments since.

She is why I wear orange.

To donate to the Leukemia and Lymphoma Society through Shelley’s Light the Night event Life's a BeachTeam Page: Shelley's Light The Night Team Page

To learn more about the 50 mile race: North Face Endurance Challenge Ultramarathon

Changing the Facts

At the Leukemia & Lymphoma Society's Light the Night awards event a few weeks ago, I met a beautiful woman about my age. From across the hall, crowded with people sipping wine from plastic cups and munching on bruschetta, crudite, and cheese cubes, I'd noticed a white lily, signifying survivorship, pinned to her blouse. My reaction: "Wow, is she gorgeous. How can someone so beautiful have cancer? Right, cancer attacks you on the inside."

I introduced myself to V. and her boyfriend. She has a form of Non Hodgkin Lymphoma, which her doctors think may have been caused by the treatments she received to cure a childhood cancer. She is not yet in remission. We chatted for a while, and I mingled my way over to the appetizer table.

The organizers announced the presentation would begin in five minutes, and that food was not allowed in the auditorium. Since I hadn't eaten dinner, I huddled near a potted plant and crammed cheese cubes into my mouth. My mouth full, someone tapped me on the shoulder. V.'s boyfriend had come back into the hallway to tell me they'd saved a seat for me since I was attending alone.

I thanked him and joined the pair. The ceremony began. One of the first presenters spoke of her inspiration for becoming involved with the association--her sister-in-law, who was battling Non Hodgkin Lymphoma. I'd been trying to hold back the tears all evening and gave up. V., sitting next to me, reached over and gripped my hand. She was crying too. To her, the story wasn't about "someone else's" life.

The Leukemia & Lymphoma Society's 2011 Light the Night Awards Party

This evening I will be attending LLS's 2011 fundraising awards party. I have been invited because of the generous donations that were made in my honor last year.*
I have been forunate enough to be a recipient of something much greater than a party invite-- other people's benevolence over the past several decades. If it were not for the funds raised for leukemia research in the past, I would not be alive today. Without ATRA and Idarubicin, I would have been dead within a week of my diagnosis.

My objective this evening is to thank the current generation of fundraisers and donors, and to clap really loud when the folks who raised the big bucks are called onto stage to receive their plaques. If the mood of the event so moves me, I may even hug a few random strangers as well.

* To those of you who donated last year, THANK YOU THANK YOU THANK YOU!

Brooklyn Bridge Light the Night Event - Pics

We had a great time at the Leukemia and Lymphoma's Light the Night Brooklyn Bridge event last night. It was quite crowded, which is a good thing!

We did have to dodge the Occupy Wall Street protestors on our way to the South Street Seaport (ironically, Barclays Capital and Goldman Sachs were among the largest donors at the LLS event).

The evening was inspirational, marred only by the news of the loss of Steve Jobs.

Thank you so much to those who walked with us (pictured below), and those who donated (Mary Lou & Craig, Aunt Lynn, my parents, Ayarza, and Nicole).

FR: Julie, Erin, Laura
BR: Nicole, Molly, Shelley, Katelyn, Ryan

Light The Night - October 5th

 

 

If you'd like to join our family this Wednesday evening for the Leukemia and Lymphoma Society's walk across the Brooklyn Bridge, please see the Event Details, and let me know, so we can coordinate meeting up.

Check-in begins at 5:30 p.m., but the walk doesn't start until 7:00 p.m. If you'd like to come but can't make it until 7:00, I can either check-in for you, or you can join us without having registered.

** A special thank you to Mary Lou and Craig for their donation, and to Lauren, who is organizing a team with her school friends to walk in the October 29th event in Santa Clarita, California.