Chocolate Cake Tasting Party

To thank all of our local friends for all the meals, help with with our daughter, rides to the hospital, and emotional support, Ryan and I hosted a chocolate cake tasting party in November. Why chocolate cake? Because each time I've had a good remission test result, we've celebrated with a piece, and the party happened to coincide with receiving the news that I'm still in remission. (Two years now, three to go until I'm considered cured.)

 

The party, with so many dear friends, was wonderful. The cakes delicious. Our only regret is that so many of those who helped us through this ordeal weren't local. (In retrospect, we should have FedEx'ed the leftovers!)

 

Below is a pictorial summary of the event:



We had five full-size cakes in the competition. Guests received a voting card, one side of which had room for notes, and the other side contained the voting ballet for the three categories- Best Looking, Best Taste, Best in Show. We decided to have guests cut their own pieces,

so that we wouldn't waste cake (throwing away chocolate cake is a crime!)

At the end of the evening, we handed out Chinese take-out containers,

so guests could take some of the extra cake home.

 

 

We displayed the cakes amongst white flower floral arrangements that contained chocolate roses,

which I had specially made from a chocolate shop.

The other decorations were brown and gold.

 

 

Each of the cakes in the competition had meaning to Rob and me. It was a blind taste testing, so after the ballots were turned in, we shared the below details with our friends:

 





"Death by Chocolate" from the A&P Supermarket bakery

Cost: $26

Our close friends, John and Vanessa, who were there for us through the daily grind of my hospital stay, recovery, and chemo treatments, introduced us to this cake for one of my first remission celebration moments.

The inside had layers of chocolate cake and fudge / chocolate frosting

Customized cake from Sugarflake Bakery in Wyckoff

Cost: $55 post $5 coupon

The theme of this cake matches the theme of my blog,

and the attitude my family has tried to maintain since my diagnosis.

The inside had layers of chocolate cake and pudding filling.

"Our Famous Turtle" from Cafe Latte in Minneapolis

Cost: $38, excluding shipping costs

When Rob and I were dating in Minneapolis, Cafe Latte was one of our favorite restaurants,

and we always ended the meal with a slice of this cake. Since then, my mother-in-law

brings us each a piece whenever she visits.

Rob's twin brother, Derek, shipped this cake to us for the party (thank you Derek!)

The layers contained chocolate fudge, caramel, and pecans.

 

 

Chocolate Rosettes, homemade by Mom

Cost: $18 for ingredients

It goes without saying that this entry was particularly special to me.

My mom made these same rosettes for my sister-in-law's bachelorette party, since Jen had a rose-themed wedding.

There was no fudging layering in these, and so were a big hit for the guests who favor a slightly less sweet dessert.

 

 

Seven-Layer Chocolate Cake from The Palm in Manhattan

Cost: $85

This was our favorite cake while living in NYC. In advance of our wedding, we took a slice of the cake on the plane and give it to the baker at our reception venue, with the request to model our wedding cake after it.

As the name suggests, the cake contained seven layers of chocolate cake and a fudgy/mouse filling.

The box it came in was from a place called Sweet Street Bakery, so if anyone not in NYC wants to try this cake, it can be ordered here: Sweet Street Bakery

 

And the winners are... but first, a few more pics:

My parents surprised me by flying in for the event, and helping out with all the prep work.

The sweetest treat of all!

 

 GORGEOUS roses from Bill and Emily, who couldn't make it to the party.

Thank you!!!

 

And a few of the voting cards:

 

 

And now, the winners:

More Magazine 2013 Beauty Search - On-line Article

The on-line version of the article and accompanying photo shoot pics can be viewed at:

2013 Beauty Search Winners

In the November edition on newsstands now, there's a "behind the scenes" photo montage from the photo shoot. I saw it while standing in line at BJ's on Sunday, while wearing faded yoga pants and no make-up. What a contrast!

This afternoon, I have my quarterly appointment with Dr. Goldberg at the John Theurer Cancer Center. It feels so great not to be starting another round of chemo this week!!!

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.

Creative Writing Workshop @ the John Theurer Cancer Center, Tuesday October 22

If you're a young adult affected by cancer, we'd love to have you join us for this event:

TIPS FOR WORKSHOP PARTICIPANTS:

More Magazine 2013 Beauty Search Photo Shoot: Behind the Scenes

The photo shoot in NYC was a memorable event, especially because my mom and her twin sister, Lynn were with me! It just happened to work out that the date of the shoot coincided with my aunt's visit! Since they are both beautiful, it felt weird to have them watching the happenings instead of being in the camera's focus.

The prize package included a stay in an NYC hotel, so the day before, we drove into the city and my Mom, Lynn, my husband, and daughter went to The Lion King on Broadway. When I checked into the hotel, an amazing goody was awaiting me.

More Magazine Goody Bag. My mom ganked the wine charms and mascara.
My daughter took the sparkly nail polish.
My husband took the granola bars and caramels.
My favorite item was the Molton Brown shampoo. It smells soooo good.
 

Looking at all the goodies was fun, but made me incredibly nervous for the following day. The coordinator had sent me a call list, which includes a schedule of all of the people involved in the photo shoot, such as: editor, make-up, nails, camera, back camera, video, etc. The lengthy list of names made me realize what a big production it would be-something I'd never considered before while paging through a fashion magazine.

The morning of, I was so nervous I couldn't eat, which  suppose was fine considering it made me feel skinnier (and who doesn't want to feel skinny when getting her picture taken?!?!) The winner for the 50s age group, Vina, and her sister Virgie, met us in the lobby, and the fashion editor, Genevieve Monsma accompanied us in the van to the studio in Brooklyn. (Vina is an amazing woman, and when she later put on a white Valentino dress, I couldn't stop staring at her. Gorgeous!)

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

Alex and Ani Charm Bangle Designed to Support Light the Night

An announcement from the Leukemia & Lymphoma society: "Alex and Ani has designed a charm bangle to support Light The Night! For every bangle sold in store or online, LLS will receive 20% of sales to support the Light The Night Walk campaign! The Lighthouse Bangle officially launched on Monday, September 9th. The Lighthouse design was chosen because Light The Night and LLS lights the way for patients and provides hope to families battling cancer. It is a reminder to all to be optimistic and keep strong through difficult times."

Purchase here: Alex and Ani Lighthouse Bangle

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.

Remission Test Results

The PCR test came back clean, so I'm still in remission!

The roses my sister-in-law Jen, my brother Jeff, and my brother Matt sent,
along with a very sweet note congratulating me on finishing chemo.
They've been so supportive throughout this ordeal. (Thank you!!!!!!)

FINISHED with Chemo!

Last night I took my final dose of ATRA, almost two-and-a-half years after my AML diagnosis.

It's hard to believe the end of treatment has finally come. We haven't received my quarterly PCR remission test result yet, but once that does come in, knock on wood, we'll be able to celebrate the end. Until I hit the five-year mark, I'll still be seeing my oncologist quarterly, and having my blood tested at each of those appointments, but NO MORE PAIN, NAUSEA, AND INSOMNIA!!!

Today, my family starts a new phase in our lives. For as far back as my daughter's memories go, she's been aware of me taking medicine and feeling sick, and having lots of doctor appointments because of the "Tiny Bad Guys." As long as I stay in remission, these memories of hers will slip away.

Happy Birthday, Lily

Happy birthday, my little angel.

Hopefully your great grandparents and cousin, Timothy, are showering you with love and kisses.

Next year, when I won't be doing chemo on your birthday, your daddy and I will do something fitting to commemorate your day. And some day, when your sister is old enough to understand, she will too.

Love you,

Mommy

Day Five

Last night and today haven't been great. Woke at 1:30am from the head pain and shortly thereafter was dealing with nausea. Managed to sleep through some of the pain this afternoon. Mom/husband/daughter at the zoo. Beautiful summer day. Trying not to feel depressed about being inside, feeling crummy.  Ten days, this will be over, and I have to keep reminding myself that these wretched pills have been killing any lingering, hiding cancer cells.

Last Round of Chemo!

This morning I started my last round of ATRA, and the last step in my 2.5 year chemotherapy regimen for APL (as long as I don't relapse, that is. Knock on wood!)

I'm already beginning to feel crummy, so am keeping this short.

My mom is here to help, which is great.

Now to get a nap in before the head pain intensifies...

Book Review: The Promise of Stardust

"The Promise of Stardust," written by Priscille Sibley, is a poignant debut novel about the tough choices a husband must make for his family. The novel begins with Matt losing his wife, Elle. Except she's not entirely gone; her fall from a ladder caused severe brain damage, but it didn't harm the baby inside her. After watching her mother subsist in a coma for a prolonged period while Elle was a teenager, she became vehemently opposed to being kept on life support if the circumstances ever required it for her. However, she'd never contemplated that the issue might arise while she was pregnant with the baby that she and Matt had been desperately wanting. Matt wishes to keep her on life support to give the baby a chance, but he's opposed by those family members who have a different opinion about what Elle would want done.

BRAVE Purple

This is a touching video about a wish-come-true for a three-year-old girl battling neuroblastoma.

Little girl gets dream house thanks to 'Make a Wish'

My dad has been involved with Make a Wish Wisconsin for years. Many in the construction industry in Southeastern Wisconsin work with him on fundraising. In this case, a construction crew of Ross & Associates literally sweated for the cause. They showed up one morning and built this little girl's dream home in a day.

AND MOST IMPORTANTLY: There are no signs of the cancer in the toddler's body. In a few years, she will be considered CURED. And by then, she will have had many happy memories in her purple playhouse.

New HuffPost Blog Post: Tips for Building a Great Hat Collection After Chemo

My new post is now live on the HuffPost Blog. Hopefully the tips are helpful for cancer patients who are now dealing with the bummer side effect of hair loss. Chemo is a great thing. As many patients are reminded, the fact that the rapidly-multiplying hair cells are destroyed means that the chemo is doing its job on other fast-dividing cells (i.e., cancer). Still, the day the hair falls out is a tough one for so many of us. I'm hoping this will be useful for at least a few patients, or their friends who want to do something to help

Chemo Style: A Cancer Patient's Tips for Building a Great Hat Collection

Cloudy With a Chance of Meatballs



 

Friday night, we participated in our town library's Second Annual Edible Book Celebration. We won three awards: Best Pre-K to 2nd Grade, Most Clever, and Coolest Mom. Well, that third one wasn't an official category, but we still won it.

 

I'd been talking to my mom about this contest ever since last summer when Katelyn and I attended the event (but didn't make a cake for it). I'd told my mom we had to enter this year, and go big. So she came out to help. Cloudy With a Chance of Meatballs is one of Katelyn's favorite books, and I liked the challenge of making the food look like it was raining from the clouds. 

Feature Story in (201) Health

The below story appeared in the 2013 Edition of (201) Health (from the publishers of (201) Magazine.) The photographs were taken by Magique Studios. I plan to write something for HuffPost so won't delve into it here, but in short: the story was a final nod to my hat collection, which helped me to feel better on the outside while I was feeling so bad on the inside.

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!

First Descents: Aggregate Ironman Challenge - 2.4 Mile Open Water Swim Recap

This past Saturday morning, the rain showers stopped an hour earlier than predicted, and the sun shone on the athletes of the Wyckoff YMCA Lap the Lake Open Water Swim. I participated in the 2.4 mile event-- the swim distance in an Ironman. Ryan and Katelyn came to cheer me on, and my friend, Alyson kindly lent me a wetsuit. (She's a veteran triathlete and is planning to join our Aggregate Ironman Team!)

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:

Remission Test Results

According to my PCR test, conducted on blood drawn two weeks ago, I'm still in remission! Two years in remission now.

At my last appointment, my doctor said this hasn't been a good year for him with APL (in terms of relapses/deaths). This made me very sad to hear. And serves as a reminder that I cannot take for granted a favorable test result.

Only five days left in this ATRA round. Then I plan to celebrate this test result as any sensible woman should, by shoe shopping! (and of course eating chocolate cake)

A Cancer Patient's Perspective: The Importance of Saying "Thank you" and "I Love You"

In the fall of 2011, I  recorded a video in response to a health advocacy group's request for tips for other cancer patients. At the time, I was between rounds of Daunarubicin, and too fatigued to figure out how to email such a large file to the video editor of the website. I came across the clip on my iPad this weekend.

As I watched the exhausted, subdued woman in the video rambling on, I couldn't help but shudder. But it does serve as a good reminder for all of us cancer patients/survivors to say, "Thank you" and "I love you."

 

Happy Mother's Day!

Happy Mother's Day, to my mom, to all the moms, and this year, a special note of appreciation to all the swim moms!

 

I've been thinking a lot about how dedicated my mom was to me growing up. Swimming is an intense sport, and she was perfect at being a swim mom- she was supportive, and never pressured me. She came to all my meets, tracked my times, bought me the coolest swim suits, and made the sport fun. She carted me to and from an uncountable number of practices, and she served as president of the swim club multiple years, and meet director other years.  

 

Katelyn has been learning to swim this spring, and it brings back memories for both my mom and me. When my mom visited in February, we went to family swim, so that my mom could see Katelyn attempting freestyle. When my mom saw her on the pool deck, wearing her pink cap and goggles, my mom started to cry. Later, she told me that Katelyn reminded her of me at that age, and she couldn't help but think that back then, she never could have imagined me getting as sick as I did.

 

But on to happier thoughts! Now my mom and I get to enjoy Katelyn's love of the pool. Will she become a swimmer? Who knows. Though she does grin the entire time during swim lessons, and she's determined to advance to Eel level.

 

And another happy thought: next year, fingers crossed, I will feel well on Mother's Day. This morning, I woke with massive head pain. Ryan and my dad took Katelyn for a walk to give me some quiet time. This is my third year of feeling sick on Mother's Day, but it's worth it because hopefully it means I'll be healthy on Mother's Day next year.

 

Have a wonderful day everyone!

  

 

 

 

 

ATRA - Round 7 of 8

This morning I started my seventh round of ATRA (al trans retinoic acid, or Tretinoin), and I already feel crummy. In the past, I've been better prepared before a round starts, with my medicines organized, my survival supplies stocked (G2 Gatorade and blue corn tortilla chips). This round, I started a day late because of a project at work, and I didn't get home from work until 10pm last night. I didn't even take the time to think through my strategy for the pain / nausea management (each round I've tried different combinations of drugs and timing). Yes, I was busy at work, but also, I think I'm experiencing a bit of treatment regimen fatigue. By this evening, when I'm really feeling crummy, I'm sure I'll be regretting my lack of preparedness, but at least my dad will be here shortly to help. Only one more round after this!

Get out the Vote!

My new friend, Elizabeth Grant, is entered in the More 2013 Beauty Search. The judging is based 50% on looks and 50% on the inspirational quality of the entrants's 300 word essay. There's a Reader's Choice component to the competition-- a $1,000 prize for the entrant who gets the most votes by May 16th.

Elizabeth is a beautiful soul, who's attitude and courage while fighting stage IV breast cancer is inspiring and humbling. As the saying goes, "Please vote early and often."

Below is the text from Elizabeth's original post on www.deadmanskipping.com*, which gives the details for voting for her:

If you haven't heard, I've decided to step outside the box and do something that I would not normally do....enter a beauty contest! Actually, I like to view it as an opportunity to share my story and perhaps inspire a hurting soul or two.

If you'd like to support me by voting, I'll tell you how. But first, you can learn about this contest here. It's for MORE Magazine and sponsored by Olay and Cover Girl. I'm entering because 50% of the judging is based on a written inspirational story of my life. The Grand Prize winner is chosen by a set of judges, but there is also a separate "Reader's Choice" winner — which is chosen by YOU (all readers). Here's how to vote.....

• The voting begins today and runs through May 16th.
• You may vote once per day.
• You must have a Facebook account in order to vote.
• Go to this site and click on the VOTE NOW button.
• [NOTE: You may have to "like" the site before it'll let you access my voting page.]
• NOTE: Unfortunately, voting won't work on mobile devices. Sorry.

Thank you!

Source: Elizabeth Grant, Dead Man Skipping Blog, April 25, 2013.  http://www.deadmanskipping.com/2013/04/more-beauty-contestvoting-begins.html

Guest Contribution - A Poem by Elizabeth Grant

Elizabeth Grant

I met Elizabeth less than a week ago, yet I already feel a connection to her. She's one of those rare people who can touch your life merely by extending her hand. She's a big believer in therapeutic writing, and the words she writes are as soothing as music. Her steadfast faith in God, in the face of adversity, is inspiring, and comforting. We met in a rather amusing way, which for now shall remain a secret. I hope we become great friends, for I think she may be my writing soul mate.

Elizabeth wrote the below poem for a friend of hers, and I loved it so much I asked her to adapt it for me and allow me to post it here. But first, a little bit on Elizabeth, in her own words on her blog, www.deadmanskipping.com:

"I was diagnosed with stage II breast cancer in 2004 at age 28. Bilateral mastectomy, chemotherapy, hair loss, forced menopause and five years later, I was pronounced cancer free. But on that sixth year, the cancer came back with a vengeance. I now have stage 4 breast cancer that has metastasized to my bones, brain and liver.  I have been married to my high school sweetheart and childhood friend, Dale, for 15 years. I have 2 children: Marielle (born in 2001) and Josiah (born in 2003)... the true love of my life is God --- my Savior, my Friend. Oh, what would I do and where would I be without Him? He gives me a strange peace that can only be described as a breath of His holiness."

Elizabeth, thank you for allowing me to share (and keep for future reading) the below.

TO LOSE IS TO GAIN
by Elizabeth Grant

It doesn't seem quite fair to me
To lose a child this way;
To carry such a precious life
And have her snatched away.

I've questioned "Why" so many times;
Why God allows such pain;
To take a helpless, unborn child...
Oh, what is there to gain?

I carry my sweet unborn babe
Down deep inside my heart;
I ache to hold and kiss and hug
and never be apart.

I wish it all would go away;
I wish with all my might;
I've grieved and tried hard to let go
But peace is not in sight.

Then I heard the voice of God;
He whispered in my ear:
My child, I love you more than life
No need to shed a tear.

I'm not a heartless Father,
My hope is that you'll see
I've given you a special gift
For all eternity.

I haven't taken her away
from you, I gave her life;
Unblemished is her little soul
And safe from hurt and strife.

I needed you to carry her
Inside your womb, you see;
How else could I create and give
This gift to you, from Me?

Your babe was meant to live with Me
Until I bring you here;
So I can bless you on that day
With a gift you'll hold so dear.

You'll get to see your Lily's face,
Shining like the sun;
It's then you'll come to realize
Your life has just begun.

I'm keeping her in constant care;
She's waiting here for you
To hug and kiss and hold real tight
As only moms can do.

Please hear My words and go in peace;
Live life and be set free;
No need to shed another tear;
Live happy as can be.

And when you think about your babe
Please think of Me as well;
For all of us will live as one
And never say: Farewell

NJ News 12 Phone Interview for First Descents / Half-Marathon Participation

 

Below is the video of my phone interview with Della Crews on NJ News 12 television. We discussed my participation in the More Magazine's / Fitness Magazine's Women's Half-Marathon in Central Park last Sunday, which was the first segment in my Aggregate IronMan Challenge for First Descents. So far, our team for the challenge is seven strong, and we hope to add more. While I'm home during my next chemo round, I plan to put together a team page on this blog, to highlight our athletes' progress.

 

Rob and Katelyn watched the interview live. Before hand, he situated her on the couch, with a blanket and snack. When the segment came on, Katelyn was disappointed; she'd thought they were about to watch American Idol. Sorry to disappoint, Sweetie...

Race Recap: 13.1 Miles Behind Me...

...127.5 miles to go...

 

In an impressive (not really) 2:59.43, I completed the first segment in my First Descents Aggregate IronMan Challenge. Given my bad knees, I speed-walked the full 13.1 miles. My original goal had been to complete seven miles, but I was feeling well enough at that point to continue. And good thing I did, because the medal for finishing is quite a beauty.

 

 

As exciting, some of my friends are signing up for the challenge too! It's a great way to stay focused on staying in shape over an extended period of time (Our goal is to complete all the segments of the IronMan by the end of 2014). Registration details here if you'd like to join us:

 

Team First Descents: Who's Up for a Challenge?

 

My new shoe bling,
a set of which I'll be sending to all who sign up for the challenge.

 

Deena Castor, Olympic Bronze Medalist in the Marathon,
as she lapped me on the six-mile loop around Central Park

Phone Interview for NJ News 12

Monday night, I'll be doing a phone interview for NJ News 12. It'll air live at 8:20PM, and then be repeated at 9:20PM.

The team behind the More Magazine's / Fitness Magazine's Women's Half-Marathon hooked me up with the opportunity to spread awareness for First Descents. I'll be highlighting that the half-marathon is the first leg in my Aggregate Ironman First Descents challenge.

Hopefully it generates some interest in the First Descents organization.

Two Years Post Leukemia Diagnosis

Two years ago, Dr. S. informed Rob and me that I had leukemia.

Having been involved in the young adult cancer survivor / fighter community for the past two years, I've had the opportunity to hear the stories of many new friends. The moment of diagnosis, and the days immediately preceding and following, are almost always the focal point of their cancer experience. Because that's when life irrevocably changed; it's the event they wish they could undo. And because it was traumatic: it's hard to forget trauma. When I hear my friends' recount their experiences, I recognize their emotions, because they're the same as mine.

Two years post Lily's death and my near-death, I'm still trying to process it. Perhaps the constant fatigue and all the drugs prevented me from facing it head on. Perhaps it's a touch of post traumatic stress syndrome. I wash my hands in an airport bathroom, and the smell of the soap reminds me of the soap in my hospital room, and it takes me back to that time. I see a baby girl, and think of Lily. But it's not just physical reminders; I'll have a moment of panic while walking to the subway or folding laundry.

Team First Descents: Who's Up for a Challenge?

I've spent my life around athletes. I still *try* to be one. I was an athlete while kayaking last summer, as were the other ten young adult cancer survivors on my First Descents trip. I want to be one again. I'd love to do an IronMan, but I don't have time to train, especially given chemo disruptions, nor knees that can handle that pounding. Part of coping post cancer is accepting realities, including limitations. That doesn't mean I can't be "out living it," as the First Descents motto goes. So, actually, I am going to do an IronMan.

Here's the catch: I won't travel the distance all at once. My plan is to sign up for swim, bike, and run races that over time will aggregate to the total 2.4 mile swim, 112 mile bike, and 26.2 mile run. In doing so, I will complete my Team First Descents Challenge.

What's an FD Challenge? It's a way to stay involved with the organization that gave me back my confidence, by spreading awareness and raising money for other cancer fighters / survivors to participate in the program. Unfortunately, there are so many young adults that could benefit from the experience.
 

Next Sunday, April 14th, I'll complete the first leg of the race, by walking at least a portion, if not the full half-marathon race in Central Park.

 

Interested in joining Team Life's a Beach Aggregate Ironman FD Challenge?

Read below and register here.

Then plan out your strategy by finding events in your area. Email them to me, and I'll highlight them here and on our First Descents team page.

Thus far, our team's events are:

April 14th More Magazine's / Fitness Magazine's Women's Half-Marathon
May 27, Ridgewood Run
June 8th NJ Openwater Swim
June 15th, Wyckoff-Franklin Lakes Triathlon

 

About First Descents

Mission of First Descents: 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.

My Prior Blog Entries about First Descents:

First Descents, May 24, 2012

First Descents Trip - T Minus One Day, June 5, 2012

First Descents Kayaking: Day 3, June 9, 2012

First Descents Kayaking Pics, June 19, 2012

Abridged Version of "Exit" on HuffPost




 

Videos from Stupid Cancer NNJ's Young Adult Cancer Workshop @ the John Theurer Cancer Center

Below is the link for the videos of the sessions at the workshop I attended a few weeks ago. It was a well-organized, informative event, at which I made some new friends I hope to see at future events. (And, despite being in a hospital, the food was amazing.)

Videos: Stupid Cancer NNJ's Young Adult Cancer Workshop | John Theurer Cancer Center

The sessions you can view at the link above include:

• Dr. Andre Goy on the exiciting new developments in modern oncology
• Brain cancer survivor, Stupid Cancer Founder, and CEO Matthew Zachary on the young cancer movement
• Young adult cancer psychotherapist Julie Larson on coping with the emotional/physical effects of cancer post-treatment
• Clinical Nutrition Coordinator Robin McConnell on how to eat healthy when "on the go" and on a budget
• Survivorship Panel moderated by Matthew Zachary (for which I served as one of the panelists)

 

Fashion & Beauty Week Runway Gala Recap

 

Last September, I posted about my obsession with the Elvis Duran and the Morning Show (Can Elvis Cure Cancer?). Well, last night, I had a crazy fan dream come true. At the fabulous Fashion & Beauty Week's Runway Gala to benefit the Diabetes Research Institute Foundation, the cast of the program was in attendance, with Danielle Monaro emceeing the event. And it gets better... my new friend Stella, who invited me to the event, had preferred seating for the runway show, and those seats just so happened to be directly behind the cast!

 

After the runway show, Danielle came over to her husband and colleagues, and I nervously told her that listening to her every morning has been a wonderful distraction from thinking about cancer and my treatments. And that I love her laugh; it lifts my spirits every time. We both got a little emotional, and we hugged! And Stella snapped this pic. Seriously, when I was young and saw clips of the Beatles' fans going crazy, I thought the girls were ridiculous. Now I'm just as bad. I don't care. It makes me happy.

 

Shelley with Danielle Monaro of Elvis Duran and the Morning Show

The runway show was fantasic, and at least 60% of the outfits I wished I could take home with me. The designers who presented were: Monique Lhuillier, THEIA, BCBG, Jay Godfrey, Melissa Odabash, Naven, Sue Wong, Adrian Alicea and JS Collections.

I had a great time with Stella. We met through her husband, Razmik. They own Magique Studios, a wedding and fashion photograper, and they're working on a project with me about my self-image issues while bald, specifically showcasing my hat collection. The story will first appear in the June edition of (201) Health, a special publication of 201 Magazine. The genesis of the project is to help other women who are now going through the self-image issues associated with cancer and chemo. Razmik and Stella's positive outlook on life has been inspirational for me.


 

StupidCancer Adult Cancer Workshop - March 16

The John Theurer Cancer Center is hosting a young adult cancer survivor workshop on Saturday, March 16th. If you're in the area, and part of the club, I hope to see you there!

For details and registration, visit Stupid Cancer Northern New Jersey Young Adult Cancer Workshop

I will be one of the panelists on the Survivorship Panel at 2:15pm, and the below is a short piece I wrote about my expectations for the day, which the cancer center has posted on its CancerPerspectives blog.

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Each of us is a cancer fighter; Together we are an army

StupidCancer Northern New Jersey Adult Cancer Workshop – Saturday, March 16 @ John Theurer Cancer Center (Register Now!)

Each of us is a cancer fighter. Together, we are an army. And, just as importantly, we’re a group of friends, who can laugh together and support each other. As young adult fighters / survivors, we face a doozy of a list of cancer complications, which span from mouth sores to reservations about dating to finding a way to pay the bills. It’s not been easy for any of us, but we can make it just a little bit better for each other. I hope you join those of us who’ve already registered for this event.

You may be wondering what to expect. Based on my experience at a StupidCancer conference last fall (for which all slots filled, so register early for this workshop), here’s one vision for how your day may go:

Remission Test Result & Over With ATRA Round 6

Another clean bill of health!

 This past round of ATRA presented a new fun side-effect: insomnia. There were multiple nights, sometimes multiple nights in a row, when I didn't sleep more than two hours. Not only was I thus awake for more of the hours with headache, but the next day I'd feel even crummier.

Only two more rouns to go!

 

ATRA Round 6 of 8

Tomorrow I start the next round. Before the last round, my oncologist gave me a free sample of an anti-nausea patch to wear. It helped at least somewhat mitigate the severe nausea. This time, he had no samples, so wrote me a prescription. The drug is not covered by insurance, so would cost me $5,000. So most likely we'll be making a few trips to the cancer center for I.V. relief, and I'll be gritting my teeth through the rest of the time.

Now is one of those times it's hard to maintain the beach attitude. In the last week, there's been a spate of bad news regarding people I deeply care about. During times like this, it is reassuring to know that we don't have to do it on our own, that we can draw strength from our faith in God. And so I pray for those who are grieving or scared right now.

New Look!!!

When I originally picked the template for the Life's a Beach blog, my face was so swollen and my vision so clouded by blood that I could barely see the screen. The sandy beige and bird silhouettes served their purpose, but now it's time to move on! Hopefully you agree this new look captures that sentiment.

While very ill and heavily drugged, I decided that I would maintain a Life's a B**ch attitude as best I could, as in "When life's a b*tch, channel positive thoughts to make it as beach-like as possible." Two years later, I credit this mentality for having played a huge role in my ability to cope with my condition. I hope the concept is helpful for others going through tough times...

The new blog header is the result of a collaborative effort with a fabulous graphic designer (whom I would be happy to put anyone in touch with). This same design (without the blog reference) will be on the T-shirts, as soon as I decide blue or white for the shirt color.

We've applied for copyright protection for the image, which makes it feel more real that something positive has come out of my leukemia diagnosis.

A final note: Yes, that crabby crab has been symbolic of me at times during this ordeal, and will once again represent me at the end of next week, once I've begun the next round of ATRA. But let's be real: who doesn't feel like that crab once in a while?

"Exit" in Print!

The Winter/Spring 2013 edition of Adventum is now available in print or as a MagCloud download!

I couldn't have found a more perfect home for my essay, "Exit." The outdoor adventure-themed literary magazine is filled with beautiful photography and gripping accounts of men and women pushing their limits in the wilderness.

In addition to "Exit" (and stunning photos of the great outdoors), the other essays featured are:

From the Seat of a Bicycle, Nadine York
The Sponge Divers of Kalymnos, by Willard Manus
Pilgrimage, by Yelizaveta Renfro
Lost, by Mac Greene
Powder, Guns, and Yoga, by Sophie Nicholson
Open Water, by Carloyn Gray
Fire and Ice, by Duncan McCallum
My Father Teaches Me to Fish, by Sarah Morris
Barefoot, Rim to Rim, by Thea Gavin

My motivation for writing "Exit" was to share with others how my experience at a First Descents camp helped me cope with the fears that come with cancer, and how to get busy living again. On the last day of camp, when my kayak capsized at the base of a waterfall, I was more terrified than I'd ever been in my life, and that's saying a lot! As I reflected on those moments, once warm and dry again, I thought about how interesting it would be to slow down those 60 seconds, to make a reader really feel like she'd been there with me, in that kayak and a year earlier in the hospital. The result became my essay, now available at Adventum Magazine: Current Issue.

Nantahala Falls
The subject of my essay and site where I capsized in my kayak.