Tiny Bad Guys

Last night, I laid down in bed while Ryan was brushing Katelyn's teeth. As any mother knows, it's extremely rare for the mom in a family to be the first in bed (Except in my case, during my ATRA rounds, I spend a lot of time in bed.). Katelyn (3 years old) came over to me with a concerned look on her face. The following conversation transpired:

Katelyn: Are you sick from your medicine?

Me: No, just tired.

Katelyn: Why do you take the medicine?

Me: Because some tiny bad guys got in my body when you were a baby, and I had to stay in the hospital while the doctors got rid of them. This medicine keeps the bad guys from coming back.

Katelyn: Are there bad guys in my body?

Me: No.

Katelyn: Are there bad guys in Daddy's body?

Me: No.

Katelyn: Why did the medicine make your hair fall out?

Me: It was so strong that it got rid of more than just the bad guys. It got rid of my hair too.

Ryan enters the room, and Katelyn flees down the hall to avoid being put to bed.

This conversation came two days after we watched the movie, UP, and I had to explain to her what had happened to Ellie, the old man's wife. The following exchange ensued:

Katelyn: Are you going to die, like the lady in UP?

Me: Some day, when I'm old, but not yet. I'll be an angel in heaven, like Grandma-With-the-Yellow-Hair

Katelyn: But you are old.

Me: Not too old. Ellie was a lot older.

Katelyn: I don't want you to die. I want you to stay with me forever.

Me: I will.


I'd hoped that her being so young when I was diagnosed would have spared us from the tough conversations. Hopefully I stay in remission so that as she continues to gain awareness, I can promise I'll be there for her. I fear letting her down more than I fear cancer itself.

Cancer Patient in the Workplace

My third post for Huffpost can be accessed via the following link: After Cancer, Returning to the Workplace

It's the first time I've ever written about what it was like to go back to work post my rounds of heavy chemo.

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.

The Loaded Cancer Question: "Why Do We Get Sick?"

My second post for the Huffington Post's young adult cancer awareness project can be read at the following link: The Loaded Cancer Question: "Why Do We Get Sick?"

If you read the post, please share it and the Generation Why landing page with others. There are a lot of great (and unfortunately heart-wrenching) stories on the project's landing page.

Spreading Awareness

The Huffington Post is doing a project on young adult cancer survivors on its Generation Why page. My first post can be found at the link below. This first one is a little nontraditional (I cried while writing it), while the other three that will be posted over the next few weeks will be in a more typical essay format and will address some of the tough topics I've had to deal with. 

Huffington Post Blog Contribution

Also, as a way of repaying the kindness bestowed upon me by the First Descents organization this past summer, I wrote an essay about my experience participating in one of its young adult cancer survivor kayaking camps. 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 is an essay entitled, Exit, which will appear in Adventum Literary Magazine's Winter/Spring 2013 Edition, available the first week of January at Adventum Magazine: Current Issue.

It's a pretty cool publication, which publishes only stories on outdoor adventures. Reading the last edition made me want to go rock-climbing (but then I came to my senses...)

Remission Test Results

My PCR remission test came back clean! I've now been in remission for one year! So I guess that makes this my first "cancerversary."

We have much to be thankful for this Thanksgiving.

To my friends, your kindness and loyalty has awed me. Thank you for all you've done for my family.

To my family, I love you so much, and look forward to all of the special moments to come. Katelyn, you've brought me so much joy, when I've needed it most. Ryan, you've been my rock. My parents, your love and support shines through on the brightest of days and darkest of nights. To Jen, Jeff, Matt, and my extended family, I love you all and appreciate your continued support of not only me, but Mom and Dad too. I've got an amazing family.

Life is a beach.

ATRA Round 5, Day 1

So I'm beginning this 15 day round a little more out of sorts than usual. After eight days of no power, the lights in our house just went on last night. It's been a stressful past week, both at home and with the commute situation, but since others on the coast are in much worse shape I can't complain.

We had a Dr. Goldberg appointment on Monday, at which my blood was drawn for the PCR test that will tell us if I've been in remission for one year. We discussed with him my ongoing issues with pain/nausea management during the ATRA. This round, we're going to see if it works better for Ryan to take me to the cancer center to receive intravenous drugs for relief during the hardest days.

It's snowing right now. The nor'easter has arrived. Hopefully we don't lose power again. 

Superstorm Sandy Update

As one of our close friends, whose parents lost their home in Howard Beach, Queens, described the aftermath, "It's much worse in person than anything you see on television." People are struggling, and frustrated. The power, commute, and gasoline situations are tough, but the towns who were hit by the surge waters are in far worse condition. Our thoughts and prayers are with them, and with our good friend's family.

In our town, which is a bit inland and elevated, the wind was the only culprit of major damage. Below is a home, on a nearby street, hit by a fallen tree. 

We will be without power (and heat) until  an estimated November 9th. Conveniently the nearby mall and movie theater have power, so Frankenweenie has been crossed off the list, and tonight Hotel Transylvania will be as well (at this point, the bar for entertainment/warmth is very low). Today Ryan aided Katelyn in Building a *Hurricane* Bear, which she named Sandy. If we can find a way to get them to the displaced children, perhaps we will return to the mall this weekend and have her build a few more.

Being a Bald Mamma or Daddy

A good friend of mine recently asked me for some ideas for her friend, who is beginning chemo shortly and has two young children. Her friend is hoping to ease the adjustment  for her children when she loses her hair. This mom is in my thoughts and prayers. I wish her and her family the best.

Regarding being a bald mamma, in my experience, it's not easy at first. But hugs and love feel no different to a child when they come from a parent who suddenly doesn't have hair. Quickly, she will realize you are the same person, despite the different appearance.

Katelyn's and my first day together post my hospital stay
(and her first day with a bald mama)

After returning from the hospital, I removed my hat for the first time in front of Katelyn. She asked me in her simple sentence fragments to put it back on. And then to take it off again. We repeated this several times, and my mom noted that Katelyn was probably hoping the next time I removed my hat, my hair would be back. My daughter's disapproval, expressed by physically distancing herself from me, was not easy for me to bare. Albeit, her reaction might have been less severe if she'd seen me more than a collective two hours over the prior 40 days. Regardless, her initial reaction quickly faded. 

Only a few weeks later, Katelyn had become so accustomed to my bald head that when I tried on a wig that matched my former blond hairstyle, she shirked away from me. I immediately took it off, and never wore it around her again. In fact, I never wore it at all. Katelyn liked her mommy bald, and that's who I am-- Katelyn's mommy.

As my hair began to grow back, one of her routine ways of showing affection was to pat the top of my head and say, "Hair growing back." Because hair grows so slowly, there's been no need for her to adjust to my appearance changing back to the "normal me." Now, when I show her pictures of me when I was bald, she doesn't associate the person in the pic with the mommy holding her. This is comforting. As a family, we are healing, and moving forward.

Below are a few ideas from a former bald mamma for easing the adjustment for children:

Light the Night - Verona, NJ

We really are blessed to have such wonderful friends.

For the Verona Park, NJ Light the Night event, Team Life's a Beach had a great turn-out. The toddlers, in particular, had a very strong showing. Our friends have been so supportive and amazing throughout this health ordeal. We felt honored to have them walk with us.

My mom also flew in for the event (between Ryan and me in the picture). She's always there when I need her, or simply when I want her.



Thanks to everyone involved in our campaign for the Leukemia & Lymphoma Society, we've raised $6,755. Wow!

Patients sometimes are referred to as "heros," for what they go through. They may be the ones battling, but being a hero is about saving others, and that's what our team members have done.

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 - New York City

This evening we'll be walking in the  Leukemia & Lymphoma Society's Light the Night NYC event. Despite the potential for rain, we have a great team representing Life's a Beach. Below is a pic of our banner, and the pics I submitted for the walk route.

Thanks, Team Captain Erin, for your awesome artistic vision
and trip to the Dollar Store.

 

 

Prayers for Chuck Pagano

Chuck Pagano, the new coach of the Indianapolis Colts has just been diagnosed with acute promyelocytic leukemia, or APL--the same type of leukemia that I have. Please include him and his family in your prayers.

The Colts play the Green Bay Packers this Sunday. As much as I love the Packers, Pagano's battle in his hospital room is far more important than the one that will transpire on the field. On second thought, I do believe that the lessons learned from sports help in fighting illness, and he will be cheering for his team from the bed.

Therefore, I will not feel guilty routing for the Packers, while I am routing for their opposition's coach.

P.S. Mom, when the broadcasters mention Pagano's situation during the game, please don't cry. We're both going to be okay.

Life and Liberty: Celebrated in Style

This post will also appear on the John Theurer Cancer Center's blog.

This afternoon, the John Theurer Cancer Center threw a party to celebrate the “C” Word. Community, that is—not Cancer. Four thousand patients, supporters, and JTCC staff gathered at Liberty State Park for the Fourth Annual Celebrating Life and Liberty event. The lawn in front of the expansive, white tent provided stunning views of the Statue of Liberty and Ellis Island. The patriotic theme embodies the JTCC community; the composition of the gathering was as diverse as our country, and all of the partiers had one thing in common: the pursuit of happiness, and life. For the second year, my husband and I felt honored to belong to this home of the brave.

Can Elvis Cure Cancer?

This post will also appear on StupidCancer's blogroll.

Monday morning, a young woman called into the Elvis Duran and the Morning Show and thanked the host for bettering her life. She was a survivor, and the radio show had become a ritualistic source of comfort for her. She claimed that Elvis had “cured her cancer.” In its typical jocular fashion, the cast speculated whether they could, in fact, cure cancer. The next caller said that she’d listened to the show on the drive to each of her chemotherapy appointments, and the third caller said she was headed to an infusion appointment that very moment.

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 Final Winner, #7

The winner of the last two of 14 movie tickets is Scott N.

Thank you again to everyone who's supporting Team Life's a Beach this year!

Thus far, our team has raised $4,690. What will this money be used for? Check out the Leukemia & Lymphoma Society's Research Successes.

 

Light the Night - Movie Tix Raffle Winner 6

And the winner is... Laura M., who happens to be one of my wonderful aunts. They've all been so supportive over the past year and a half. Thank you.

The Wisconsin walk took place yesterday evening. Thank you Jeff, Matt, and Jen for leading the team! Pics to come.

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 4

Today's winner is... Kelly B.!


Thank you again to everyone who's supporting Team Life's a Beach in the Leukemia & Lymphoma Society Light the Night Walks.


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)

Glamour and StupidCancer.org



October 2012 issue of Glamour, for stupidcancer.org

The current issue of Glamour magazine features a promotion for the i'm too young for this foundation (or StupidCancer). The organization provides educational resources and a vibrant on-line community for young adult cancer survivors. It also hosts a huge young adult cancer summit (OMG 2013 Vegas: Cancer Summit for Young Adults. A smaller scale version is happening this Saturday, September 15th, in New York City, which I'll be attending (OMG East/NYC: Cancer Summit for Young Adults)

Does it feel cool to have my mug shot in Glamour? Sure, but it would feel even cooler to never have been diagnosed with cancer. Now, if they'd wanted to feature me for my terrific fashion sense, THAT would be something...

 



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.
 

When a Bad Turn Turns into a Good Turn

Like many Americans, we had never been to a polo match before today. Our good friends invited us to attend with them, and to meet their beautiful new daughter. I knew we would be in unfamiliar territory at the tony Greenwich Polo Club event, which also featured a Ferrari car show and chaise lounges for drinking champagne. This became even more apparent when we took a wrong turn.

We were driving down a country lane in Greenwich, lined by a stone fence at least a hundred years old that provided privacy for the estates beyond it, when Ryan veered sharply left, onto a gravel driveway. The stone fence had become a white wooden fence that bordered a beautiful grassy hill and a stone clubhouse in the distance. We thought we'd reached our destination.

Unfortunately, the gravel drive ended ten yards beyond the open gate. The car ahead of us, who'd drawn the same conclusion, did a Y turn and exited. While in the middle of our Y turn, the gate swung shut. We were trapped on the patch of gravel. I hopped out of the car and yanked on that pretty white fence. It didn't budge. I looked for a manual release button, but all I could find was a keyhole. Meanwhile, Ryan was laughing at me from the car.

I climbed back in and asked, "What do we do now?"

"Offroad." Ryan gunned the engine, and the car jerked onto the manicured lawn and up the hill.

Several long horse trailers came into view, and the polo field, with its grandstands and line of picknicking spectators on the far side. We were on the players' side of the field, having circumnavigated the spectator parking lot (and person collecting admission). Since our exit through the fence remained blocked, we did what any proud Jersey folks would do: parked the car and acted like we own the place. We admired the horses and crossed the field before play began.

Once we had realized the V.I.P. nature of our parking spot, Ryan commented that our wrong turn had turned into a good turn. Since polo isn't exactly a sport one follows closely when she has no concept of the rules, I got a little philosophical over Ryan's comment. Life is full of wrong turns, whether accidental, intentional, or unavoidable. The one thing they have in common is that they can't be undone. Sometimes, it's possible to complete the Y turn and return to your original route. Other times not.

I will never stop wishing that cancer hadn't happened to us. But it can't be undone. We drove through that gate, and it locked behind us. And the place we found ourselves in was no manicured lawn at a posh club. But it has not been without unexpected positives, like the result of our wrong turn today. We have realized how blessed we are to have our family and friends. The experience has reaffirmed the importance of having Faith. It has given us a greater sense of purpose and focus. On wonderful days like today, I have to remind myself of these benefits, because other days are not so easy.

But today was one of those wonderful days, spent with four of our good friends, and Katelyn, who watched the game more closely than any of the adults. Some day, she will learn about wrong turns. In the mean time, divots are far more interesting.

Stomping divots like a pro

Our car is the red one in the distance, in its V.I.P. spot

Go Team! (Don't ask me which one.)



Nothing like a sunny day

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 Update: Friday, 9/7 @ 5pm - Movie Tix Raffle

At the end of the day on Friday, Katelyn will be drawing two names from those who have signed up to walk and/or donated to Team Life's a Beach in 2012. Also, I am working on team T-shirts. Details to come...

The Leukemia & Lymphoma Society has become so important to me not just because of my personal experience, but because of all the friends I have made over the past year who have also been afflicted with a blood cancer.

One of my friends, Dona, just received her bone marrow transplant last week (please say a prayer for her). The day of the transplant is commonly referred to as the patient's birthday, because it literally is a new chance at life. She was diagnosed with AML last year on Mother's Day. We met her at the bone marrow donor drive, where Ryan joined the registry (Be the Match). Her daughter started kindergarten today, while she recovers from the transplant in a sterile wing of a hospital because she does not yet have an immune system. She is a brave, kind person and embodies the Life's a B**ch! attitude.

If you would like a shot at winning the movie tix, please check out Team Life's a Beach Details. We are in the process of adding a Southern Cali walk to our team, thanks to Sheila and Lauren!

Dona and her Big Kindergartener!

 

A total stranger's gift to Dona and her family: LIFE (a.k.a. bone marrow)

 

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.

Happy Halfway!

I just took my last four ATRA pills for this round. Four rounds done, four to go.

During competitive swimming practices growing up, we used to shout that expression halfway through hard sets. This doesn't feel so different. Halfway through the pain, and just like with those hard workouts, I'll grit my teeth and get through the last four rounds.

Thank you to all my coaches and teammates for teaching me how to be mentally tough!

First Birthday

Today would have been Lily's first birthday, if she'd been born on her due date.

It seems like it would be hard to miss someone we never knew, but Ryan and I do. We feel her absence the most during the moments that would be perfect for Katelyn to spend with her sister and playmate.

PCR Remission Test Result

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

Right now, I feel so sick that I can't think about celebrating with chocolate cake, or even adding a picture of it to this post. I've been throwing up throughout this morning, which means the ATRA dose I took this morning is likely not still in me.

ATRA Art

Today is the first day of round four of eight. On our way to my last appointment with Dr. Goldberg at the John Theurer Cancer Center, we passed a display of patient artwork in the lobby. The reproductions were from cancer patients across the country, but JTCC does offer free art classes as a form of therapy. Some day, I'd like to try one. I am a believer in art therapy (Coping Through Creative Expression). Until I can fit one of the center's classes into my schedule, I've decided to do a little art therapy on my own. Below is the result of my effort this morning, before popping the first four pills, entitled ATRA Art. A mock interview follows, which was just as enjoyable to write.

Q & A with the Artist

Q: How did you prime your canvas?

A: The same way any other good leukemia patient would: with disinfectant.

Q: What inspired you to include the broken tea cup in this piece?

A: It was sitting on the dining room table next to me when I began working. The tea set is one of Katelyn's all-time favorite toys. She first became capable of imaginative play shortly after I returned from my induction hospital stay, so our first tea parties together are great memories for me. Last week, she dropped the tea cup on a tile in our kitchen. It will be glued back together. Just as these treatments have been gluing back together our happy family life.

Q: While you were working, were you worried you might sneeze and blow the design?

A: Yes. I wore a face mask from my days of no immune system.

Q: The pills all face the same direction in the deliberate lines. Was this intentional?

A: That would be one heck of a coincidence if it weren't. I wanted to create the impression of order in chaos. At one point, too late, I realized I'd placed a pill facing the wrong direction. Hopefully no one notices.

Q: Did any particular artists influence this masterpiece?

A: Vik Munz. I dig his work.

Q: Did any particular drugs influence this masterpiece?

A: Perhaps. Theoretically, it would fit my treatment timeline.

Q: Can we expect to see more greatness from you in the form of ATRA Art?

A: I can't commit at this point, but the fact that I have four more rounds to go should give you a sense.



Buy "Gold" Now

It feels odd to be quoting the gold bullion and coin commercials that have apparently imprinted their message into my subconsciousness, but I'm really excited about this new book. Its author, Chris Cleave, also penned Little Bee, which was a runaway sucess, and Incendiary.

In the words of the September issue of Writer's Digest, Gold is about "...two rival Olympic cyclists--one a single-minded athlete to the core, the other an emotionally torn parent to a daughter with leukemia."

When unathletic Cleave first started working on this project, he spent two months training 20 hours a week as a cyclist, so that he would better understand his subject matter. The physical exertion wreaked havoc on his immune system, which gave him the idea for coupling the story of a sick child with that of elite athletes.

To research childhood leukemia, Cleave spent time at Great Ormond Street Hospital in London. He was so touched by the children he met there that this past June, he completed the HotChillee London-Paris bike ride to raise money for Leukaemia and Lymphoma Research. In total, his team raised over £100,000.

Since I just purchased this book, and likely won't finish it until after both the actual Olympics are over and my Aug. 7-21 chemo round, I can't comment on how good it is. But I've got a feeling it's not going to disappoint...

 

Dr. Goldberg Appointment

Time flies when you're a cancer patient.

No, that's not right.

Time flies when you're having fun.

Much better.

I cannot believe it's already almost been three months since my last round of the ATRA chemo. This morning, Ryan and I went to the cancer center for my quarterly consult and blood tests. We will receive the PCR remission test result back by the end of next week. This time, Dr. Goldberg also ordered a cholesterol level test. ATRA has a propensity to significantly raise cholesterol, so if the result comes back high, he'll put me on a statin.

Hopefully I won't need the drug, since it's only been less than three months since I went off Coumadin, the blood thinner. I've been enjoying feeling a little more "free." For instance, I rode my bike for the first time last weekend. (People on blood thinners are advised to avoid activities that can result in physical trauma for the obvious reason of greater bleeding.)

It's a good thing I waited, for I discovered that riding a bike is NOT just like riding a bike, in terms of being able to pick it up again. While in the driveway, I clipped one shoot onto the pedal of my racing bike and realized I wasn't wearing a helmet. Instead of unclipping that foot, I raised my other foot. Ooops. The result: driveway rash in three spots on my left leg, three massive bruises on my theft thigh, and a gash on my right ankle that I didn't discover until after my ride because the chain grease had staunched the bleeding.

Nothing like being back in the saddle of life. Given how prone to anxiety I've been since my diagnosis. I'm proud of myself for actually going on a bike ride after my rough start. It might have something to do with the First Descents trip I recently attended. The adventure helped me remember how good it feels to let go of fear enough to challenge myself. I've been thinking about what my "FD Challenge" will be. More to come on that.

Fighting Together

Lately I have heard from multiple sources that my blog has been a source of strength for other cancer fighters and caretakers. For anyone who reads this who is also coping with cancer, whether as a patient or a family member/friend, my prayers and thoughts are with you.

Throughout my journey, I have discovered that the Internet can be a terrifying place. Information and the frequency of "worst case" outcomes can seemed biased toward the negative on the Internet, because often those that reach out on the Web are those most in need.

Hopefully, my blog, which I really, truly try to keep as encouraging as possible (Life IS a beach!), serves as a positive reference for those working through a cancer diagnosis. If you have come across this site as part of a broader Internet search, please please remember my negative bias point above. Use the web as a tool to educate yourself, but not as a source to feed the "what ifs."

It saddens me every time I learn of another patient. I wish I were the only one. I am a huge believer in the power of the mind, and of drawing strength from the positive relationships in our lives. If you could use one more friend in your corner, please feel free to find me on Facebook or leave a comment.

In the spirit of using the Internet to brighten our spirits, here's an amusing website I recently came across: When Parents Text.

First Descents Kayaking: Pics

Photos courtesy of Postal, a fellow First Descents camper and now life-long friend of mine.

View of the Great Smoky Mountains from the Watershed Cabins

 

Day 1 - I'm just beginning to channel the Shark Bait in me.

 

The Commons at the Watershed Cabins,
which contained a firepit where we met each night
to discuss the day and to translate our river experience
 into observations about our "normal" lives

Happy Father's Day!

 And a special thank you to the two men in my life, who did an amazing job of taking care of their daughters throughout the challenges of the past year. Cancer tried to destroy us, but Ryan and my dad were too tough for that. Through their love and dedication, they strengthened the bonds in our family.

Ryan & Katelyn at The Don Cesar, April 2012

Shelley, Katelyn, & Dad/Papa, July 4 2011

First Descents Kayaking: Day 3

This entry also appears on the First Descents Blog as "The Participant's Perspective - Shark Bait"

This evening marks the end of my third full day of FD1 Kayaking camp. I am loving it. Today, we had a blast whitewater rafting. Two days ago, during the skill-building on the lake, we began to see just how powerful a metaphor kayaking is for life and our cancer journeys. Yesterday, however, was not a good day for me. But because of the powerful opportunity for self-exploration and bonding that First Descents provides, in retrospect, Day 2 was the best day so far.

Day 2 was our first day on moving water. A class I river, the objective was to learn to navigate with the current and minor obstructions. Despite my great interest in mastering these techniques, I could not concentrate on Big Papa’s lesson. I felt fatigued, nauseated, and had a severe headache, likely caused from a combination of dehydration, changes in my diet, and chemo lingering in my body from the round I’d concluded fifteen days earlier. I was so out of it that I couldn’t follow his instructions and had trouble staying with the group.

When we pulled up on the shore for lunch, I walked right past the cooler and lay down in the back of one of the vans. Number Two, a staff member, checked on me. So did Mack, Brave Chicken, Junior High, and several of the other campers. Already we are a family. Ha-Chee joined me in the van. She did not feel well either, but her pain more easily could be explained. She is on a daily oral chemo regimen. Her body is working hard to fight the cancer, and her mind is working even harder to maintain her inspiring courage, grace, and wit.

First Descents Trip - T Minus One Day

This entry is also being posted on the First Descents Blog.

Tomorrow morning, I leave for Bryson City, North Carolina, for a week of whitewater kayaking and bonding with a dozen other young adult cancer survivors.

I feel both over-prepared and completely underprepared. I've packed: 13 pairs of socks; three tubes of sunscreen; not only mosquito repellent, but AfterBite as well; Neosporin, just in case my head and a sharp rock meet in the river. I almost bought a watch with a compass, to guide me if I get lost in the mountains, but then I realized that knowing which way is north isn't the same as knowing which way to walk.

The First Descents team understands that we survivors tend to travel with more anxieties than the average person. Their objective for the program, which has become my personal goal for the trip, is to "forget" to put some of my anxieties back in my suitcase when I pack before heading home.

In the spirit of camaraderie, everyone who attends an FD camp is referred to by nickname instead of their real name. I either need to show up with a name, or I'll be given one. I've never had a nickname; I've always taken myself way too seriously for that. But showing up without one is yet another risk: I could wind up being called Fluffy.

How does one come up with a nickname for herself?

Book Review: Comeback Love

In Peter Golden's "Comeback Love," Gordon Meyers seeks out "the one that got away" 40 years earlier, Glenna Rising. Gordon, an aspiring writer, and Glenna, a sexy med student had a passionate love affair in New York City in the 1960s, against the backdrop of the Vietnam draft, women's rights, the pro-abortion movement, and the hippie culture. Since Glenna broke Gordon's heart, much has changed in both their lives. Gordon wonders if one thing has stayed the same-- the passionate way they felt about each other.

Recap: Young Adult Cancer Survivor Movie Night

This entry will also be published on Cancer Perspectives, the John Theurer Cancer Center Blog

At the Young Adult Cancer Survivor Movie Night, the question was raised: “How has cancer affected your social life?” A moment of silence followed, in which each of us reflected on just how cancer has changed us. For many young adult survivors, walking into a bar bald-headed and fatigued feels no less awkward than walking into a bar naked. 

Cancer is a party crasher. Yet here we were, a group of young adult survivors, hanging out, having fun. We’d spent the evening eating pizza, chatting, watching a movie. Thanks to the John Theurer Cancer Center,  the Young Survival Coalition of Northern NJ, Stupidcancer.org, the Leukemia & Lymphoma Society, and Gilda’s Club Northern New Jersey, we had an opportunity to kick back and relax with others who were happy to be at an alcohol-free event, who didn’t mind when they turned the lights out at 9 p.m.   

Don’t get me wrong: many survivors refuse to be hindered by their diagnoses and are able to make crazy late nights happen.

Book Review: The Lifeboat

Charlotte Brogan's debut novel, The Lifeboat, is a story of man vs. wild, man vs. man, and man vs. himself. By man, I mean human. As chivalry in 1912 dictated, the majority of the passengers who secured seats in the lifeboats of the sinking ocean liner were women, including the main character, Grace Winter. She recounts the events that occurred while stranded at sea from a jail cell; she is on trial for her role in those events.

The novel centers on one lifeboat's passengers' quest for survival. As conditions deteriorate and the days pass without rescue, the passengers become more desperate. With no land, food, or fresh water in sight, leadership and loyalties are questioned, and a new conflict arises-- man vs. woman.

Cancerversaries

Cancerversary is a playful word with a deep meaning, and it represents a reason to celebrate. Now that I am more attuned to the survivor community, I see the word frequently. But what exactly does it mean? Is it the anniversary of when a person is diagnosed with cancer, as the name suggests? Or is it the anniversary of being declared in remission? (If the latter, then shouldn't it be called a Remissionversary?)

First Descents

I have never been a spontaneous person. Cancer, and all the new anxieties that have come with it, have made me even less inclined to take risks or act impulsively. So it's somewhat surprising that today I booked a round-trip ticket to Nashville, Tennessee for June 6th, returning June 12th. That's 13 days away, and I don't own a third of the items on the suggested packing list.

Why am I flying to Nashville and staying in nearby Bryson City, North Carolina? The non-profit organization, First Descents, is providing 14 other young adult cancer survivors and me with a week-long, whitewater kayaking adventure in the Great Smoky Mountains. The mission of the camp is to help survivors heal and regain their confidence and sense of empowerment.

My boss, who is involved in the organization, has convinced me that the benefits of this experience will be worth the effort it will take for me to bust loose from the cage of fear I've been living in for the past year. Thirteen days doesn't give me a lot of prep time. It's also doesn't give me enough time to properly worry and fret about all the unlikely things that could go wrong, which is perfect.

Three Down, Five to Go

I took my last four ATRA pills this evening. The headaches should end by mid-morning tomorrow. One step closer to being finished with chemo.

Mother's Day

I hope all mothers had a wonderful day yesterday. I missed being away from my mom. I couldn't have gotten through the past year without her.

Even with the side effects of the ATRA, it felt so great to be at home this year, with my daughter, instead of looking forward to a 30 minute visit with her in the family room outside the leukemia wing at HUMC. Only one more year of treatment during Mother's Day.

My mom and I singing "I Will Survive" as an ode to all the support she gave me
through the ups and downs of dating. Now, the song has new meaning.

Katelyn's Mother's Day present, which I've known about since Wednesday
when she announced that Daddy and she made me a bird house.

Remission Test Results

After checking the mailbox for the letter from the John Theurer Cancer Center, for the third day in a row, I caved and called to get my remission test result. No news should be good news, but during the wait, there's always a "What if it's bad, and they just haven't called yet?"

In this case, no news is good news. The blood sample was negative for the APL chromosome abnormality. As of May 25th, I will officially have been in remission for one year. I'm already contemplating chocolate cake choices...

At the moment, I feel a mix of relief and trepidation. This afternoon, while lying on the couch, enduring the side effects of the ATRA, I searched the Internet for APL and came across some cases of patients who have relapsed. As if the meds don't have me in enough of a tizzy right now... I want to believe the cure rate for this disease is 100%, and I hate reading any evidence to the contrary. These people are in my prayers. I pray that they will be eating chocolate cake soon too.

ATRA Round 3 (of 8), Day 1

And the fun begins...

ATRA (Al Trans Retinoic Acid, or Tretinoin)
 2 x 4 pills per day for 15 days = 120 pills

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

Goldberg Appointment

Now that the pre-chemo apointment every three months is becoming routine, we refer to  it as the Goldberg Appointment. At last Friday's meeting with Dr. Goldberg, he told me to stop taking the Coumadin (i.e., Warfarin). It's standard practice to take a blood thinner for a year post blood clots, and it's now been a year. No more rat poison in my system, and no more blood draws every few weeks to measure my INR/PT. I did have my blood drawn for a PCR remission test for the APL. We should get the result by this Friday.

We also discussed the plan for pain management for this round of ATRA. We're trying a new tactic- a patch that will release a continual stream of medication into my blood stream.* Hopefully by bypassing the GI tract, it won't compound the nausea caused by the ATRA. The downside is it will make me constantly drowsy, which might actually put me in the right state of mind to finally watch the Twilight series... Given the quantity of blood products I've "consumed" over the past year, I guess I'm on Team Edward.

* Thank you, Nurse Mary Lou, for suggesting this!

Ich bin klein

The memorial for my grandmother was held today. She asked us to remember a German prayer, which she taught all of us as children. In English, it means, "I am small. My heart is pure. No one shall dwell in it except Jesus alone."

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