Next week...NATIONAL YOUNG ADULT CANCER AWARENESS WEEK

There are lots of things going on in our world right now that are not right. At times it seems like the bad things that happen in life we are powerless to stop.
Take cancer...its easy enough to think that cancer too is something that 'just happens' and we throw our hands up in frustration. The world just isn't fair, right?

It isn't fair...it isn't fair that anyone should have to battle this disease...and truly it is the most obvious injustice that anyone should ever have to die of it either. But what if I told you that a stastical demographic group (spanning more than twenty years) has not reaped the same rewards-- the same likelihood or chances that others have enjoyed of surviving their disease. If you are diagnosed in your late teens, twenties or thirties...according to current studies you don't have the same shot as everyone else outside that bracket has.

But forget the statistics for a minute and let's just talk people. Because numbers don't speak clearly...not until you've watched a wonderful young vibrant person you know pass away when perhaps they could have been saved with earlier detection or better access to resources. Watching this, you become attuned to the real lesson in those numbers...that perhaps... just perhaps--- a better way, a more proactive and informed health care system and a more informed public might have made a difference. If the blinders were taken off and the next time a teenager or young adult went into their physician's office complaining of consistent or alarming symptoms they would not be dismissed and told they're too young to worry about cancer. In fact, for young adults late diagnosis remains the largest factor to contend with. Awareness could do so much to change that.

Perhaps yes---then perhaps we all can make a difference.

But change doesn't happen by a single domino knocking over just one other domiono. If we are to see a difference we need to not allow the chain to stop at us. Next week e-mail your friends, co-workers and family about Young Adult Cancer Awareness Week. And ask them to sign SeventyK, the petition to promote legislation aimed at changing those ugly statistics I mentioned. Yes, there are ugly things in this world...but believe that your voice can be heard. Make your statement...and hope the chain continues on.

www.seventyk.org

California Dreamin'...Part One

On such a winter's day...

Over February break I went to California (my 31st state) and I have to say from the very deepest recesses of my upstate NY frame of mind----I don't know why I came back to yucky winter here. Ha ha!

Most of you who read this know there are things on my bucket list--(the one I created in 2006 upon my second cancer diagnosis)-- that I've slowly been checking off. This time it was visiting California, which I'd only ever experienced from a stop over at the LAX airport on the way to Hawaii (lame!).

Back in the fall my friend Kevin called me and happened to say "hey, why don't you come visit?" and it was impetus to actually consider. Kevin lives outside Los Angeles in Playa del Ray, right on the beach practically! Kevin has the life, seriously. Okay now I get it...now I get why one might put up with smog and earthquakes and traffic jams. We will not mention what the psychic said, Kevin.

My first full day there (mind you without any of my luggage--ha ha!) I went out to breakfast with Cutter and Butter while I waited for my friend Val to come. Yes, I am serious Cutter and Butter. :) Butter is Kevins roommate, Cutter is their friend. We had awesome omlettes at this diner nearby...Good times!

Then Val and I went cruising all around L.A. and she showed me all the touristy sites of course in Hollywood. But we actually got to a scenic overlook where you can see all of Los Angeles and of course the Hollywood sign...which you might be able pick out ever so slightly from the picture of Val and I. We had some interesting adventures along the Walk of Fame as evidenced by the rather strange looking leather clad hello kitty studs.

What a time! That night (Saturday) we had dinner in the Valley at Kevin's friend Butch's house. Yummy! And to my surprise, I was tricked into eating Brussell Sprouts which I actually loved! My mom would be so happy to hear this--I ate Brusssell Sprouts! Kevin is a sly culinary whiz...nice work!

The next day was the surprise brunch. I love surprises as anyone can attest that knows me...When Kevin told me to bring my coat I was pretty sure the brunch would be outside. Butch, Butter, Kevin and I stepped aboard the Hornblower for a brunch cruise in Marina del Ray!

Fun! The other surprise was that the guys had told the staff of Hornblower that is was my birthday...so as I swilled down the never-ending champagne I celebrated my special day...ha ha.
What a fun afternoon!

Some other highlights of the time in L.A included a little karaoke...who would have guessed, huh? There was also a visit to speak to the class Kevin teaches at Loyola Marymount University, and of course the thing Side Order of Life fans might appreciate, dinner with Diana Maria Riva and her husband, Mike.
Kevin and I met this awesome couple out in Hollywood for a fabulous meal I will never forget.

More than a year ago when the effort was launched to save Side Order...and I was telling all of you to send menus I certainly never imagined in my wildest dreams that I'd meet the woman who played Vivy. Diana's raw and honest portrayal of Vivy made those of us who are cancer survivors proud on so many levels. Vivy was strong, she was real and she was a real person who just faced a challenge with her own blend of humor and vitality.

Well Diana is just as vivacious, just as fun...and so is her husband Mike. I am so glad to have finally thanked her in person for all that she brought to our lives (as survivors) for that one phenomenal season. If Hollywood has any sense at all...her next project is going to take off like gangbusters. Not only is she a phenomenal actress...but a truly warm and genuine person.

I would say Los Angeles was a pretty amazing time!

Big bites and bold streaks

I have been looking at life through a different lens lately. Those things that we do...the decisions we make....whether to take a risk, try something new...go a different path. Fear itself is the obstacle to that growth and I'm trying to get better about knocking that fear factor if you will out of my life.
But it's not to say that I'm not a big wimp every now and then.

Who hasn't had the best laid plan fall apart...and then be dashed and discouraged the next time?
Who hasn't put their heart on the line...and felt once bitten but twice shy?
Who doesn't look back on little vignettes of life and feel the sting of what could have been?

How do we work out these kinks---live the best life...I'm not about to tell anyone that...because I don't know. I really don't know. And that's just it. None of us know. Not even the so-called experts really have their shit together.

The self help section at Barnes and Noble can take you only so far...because while you're reading the book on how to live----someone else is out doing what you're reading about.

I'm a big believer in the idea that sometimes poetry, philosophy and grand ideas come to you in whispers...or car radios because that's just where I found my inspiration the other day. A song played in my ipod that hadn't come up on shuffle in quite a while. And it moved me enough to play it again.

And thank you John Mellencamp for getting this right...because it fits just where I was at...what I was thinking.

See the moon roll across the stars
See the seasons turn like a heart
Your fathers days are lost to you
This is your time here to do what you will do

Chorus:
Your life is now your life is now your life is now
In this undiscovered moment
Lift your head up above the crowd
We could shake this world
If you would only show us how
Your life is now

Would you teach your children to tell the truth
Would you take the high road if you could choose
Do you believe youre a victim of a great compromise
cause I believe you could change your mind and change our lives

Chorus:
Your life is now your life is now your life is now
In this undiscovered moment
Lift your head up above the crowd
We could shake this world
If you would only show us how
Your life is now

Would you teach your children to tell the truth
This is your time here to do what you will do

Your life is now your life is now your life is now
In this undiscovered moment
Lift your head up above the crowd
We could shake this world
If you would only show us how
Your life is now

John Mellencamp "Your Life Is Now"


We wait for tomorrow with so much in our lives...but life, in its finite nature isn't waiting for us to get our acts together. Live dammit! Live! ha ha ha!

Hoping for February to be better

On the way to work Thursday I heard a really sad story on the news....a woman and her dog had both been struck and killed by a car while walking down the road. The snow had hampered the driver's sight. Tragically, it was unavoidable.

When I got to work an email came across from my dad.
Mary Beth, the family friend who'd taught me how to ride, who'd help us pick out Bear (my beloved horse) had been the one killed in that accident.

I'd last seen Mary Beth right around the time I was in treatment. My dad had taken Lucy, (then a puppy) and I up to the pond to play and there Mary Beth was with her dog. She had marvelled at how I'd grown...perhaps in her mind's eye she'd seen me as the young kid she'd gently reminded to put her heels down in the saddle. Perhaps I'll always see her as that young woman in her 20s who I'd idolized.

Tears came...but I had just ten minutes before I had to proctor some students in a Regents test.
I proctored that test, but all the way through kept thinking about Mary Beth and how I'd wish I'd taken her up on her offer that day to visit her farm. Some regrets you just can't help.

I wish there were something that could explain to me why bad things happen to good people.
There is philosophy that I read that explains some of it. Harold Kushner does an excellent job of it. Sure, there are words of comfort that help give higher meaning to so many of life's unfairness....but sometimes I think its okay to just throw our hands up.

I guess I am ready to put January away...it's been a difficult month.

You captured our hearts buddy

I lost my dear friend this weekend.

Zach passed away quietly and peacefully Sunday morning.

And I am changed...yet again...in a way that is shades different than the person that I was even when Zach first stepped into my life and into my heart.

Just two weeks ago Zach's mom called me to tell me that Zach would be up at the hospital again that following day. I had a doctor's appointment and knew I might cut it close swinging by the other side of town...but felt compelled to chance it. As it would happen, this would be the day that with the help of his Mom and Dad, Zach told me he would be going to the hospice. For this fierce, determined young man who fought for so long...it might appear that this was giving in...accepting that the fight was over. But this was not the case.

He was taking control and bravely deciding how his final chapter would play out. There in that room, sitting by his bed I was feeling weak, crestfallen at hearing this news. But I couldn't show it...not when Zach was resolute. When you see strength like that...you just don't want to be the one to crack...I was just trying to follow his lead. As hard as it was to hear this...the finality of it--- Zach was facing this with the bright side immediately ready to share with me. He could "have visitors there...he could watch his videos...bring his favorite things...hang the "Lance bike" in his room."

After all, as Zach had reminded me on countless occasions his blood type was just right for him--- B positive...and that was what he had to do---be positive. It's one of many things I'm remembering now...things he said and little inside jokes...simple things he enjoyed that the rest of the world takes for granted. Like Triscuits...who lives to taste a Triscuit cracker?...Zach did and I'll never go by a box of them without smiling and thinking of him.

Zach had a sneak peak at several little goofs I made. Anyone who knows me any length of time catches on to my scatterbrained nature. I've been trying to correct it...but alas it's just here to stay. But what was so good about Zach was his ability to sweetly point the goofs out...but not broadcast them. I told him once jokingly that I only did that to make him laugh. Well, he knew the truth...

While I was driving him somewhere once I realized to my frustration that the shifter was stuck.

"Oh man! So much for this new car," I said haphazardly jerking the handle back and forth.

Without missing a beat Zach lifted a quarter out that had rolled into the shift track, thus immobilizing the shift. "Here...try it now," he said smiling. Then we both laughed...and there was no judgement. He could have thought to himself, 'geesh, this dippo---Aha, somebody's got it worse than me', but if he did he never let on. Zach lived in the moment.

Though that might have made a great story to add to his storytelling creds he never retold it for a cheap laugh. It was our little inside joke.

What I'll remember forever about Zach is that he shared his whole heart with you. From the first day I sat with him and Michael in the lobby of the 5500 floor lobby next to the candy machines...to that last visit and that very last hug, the one that would be goodbye, he didn't hide his gratitude. "Thank you" was a word that passed his lips often and without trepidation.

And as we all prepare to say goodbye this week I am thinking of one moment that sums up Zach and his determination to face the most unbearably difficult trials of his life with positivity.

The afternoon after Zach had been awarded the Lance signed bike at his local bike shop the small little group that had gathered to see him get it dispersed. I too headed out the door. But he called after me just as I passed the threshold...he ran up and stopped me. As I turned around to face him, he looked at me with a look of contentment. "Hey...do you ever sometimes think that cancer was the best thing that ever happened to you?"

Knowing the absolute sincerity with which he uttered that statement...no self pity, no desire for accolades about how brave he was...I felt a pang of truth. But it didn't settle easy. I wanted to agree without reservation...but I felt how painful and layered some heartfelt truths can be. Despite the fact that his storm had never truly subsided...and there hadn't ever been a reprive...a remission...an enticing promise of a future. Despite the fact that he struggled, he felt it made him stronger. He felt he was learning as he endured each part of the journey...his faith was no small part of that. And he also was grateful for the people that were brought into his life...people he once said he may not have ever had the honor to cross paths with in different cicrcumstances.
"The best thing?" I thought, and it hurt to even contemplate, looking at where the road was leading for him... but I knew he meant every word...that much was clear.

I nodded through tears and it almost stung to agree, looking at him in a moment I knew I would always remember for the rest of my life."Yes, Zach...sometimes I do"

So one night later when Sean Swarner, the mountain climber who'd shared friendship and his posh hotel room with Zach, echoed those very same words about his own experience----there were at least two audience members in absolute awe.
That keynote speech struck a chord. Zach turned toward me with an ear to ear smile of jubuliant recognition and gave me a wink.

I will always remember Zach DeRidder. He is alive in my heart.

I hope as you read this you'll keep him in yours.

Miss you Z-Man.

Zachary T. DeRidder July 30, 1984--January 18, 2009

Reminders of gratitude, songs of inspiration

This past Sunday we were lucky enough to have Christine Baze perform here in Rochester to benefit Melissa's Living Legacy. I'd first heard Christine's emotional and inspiring music on the I'm Too Young For This benefit album.

Her song Radiation Katrina grabbed me but hearing her tell the real story behind it before she sang it live was amazing.

Katrina was a radiation tech who Christine befriended while she was going through treatment for cervical cancer. Katrina assured her that everything would feel better on the other side...when she was well again and cancer behind her. At that point Christine found it hard to believe then, as all of us in darkness might question. Indeed it's human nature that in the midst of the trauma of an experience our line of vision can be cut. We need people around to tell us that somehow there will be something better waiting for us when this dark cloud has passed on by.

I was lucky enough to have those people in my life..but surely, I didn't always trust that they were right when I was in the thick of things.

That song hadn't been on Christine's set list but when I told her before the concert that that song was a favorite she nodded and took mental note. "This one's for Leah" she said when she began to play. Tears started to form in my eyes as she sang it. Yes, everyone who knows me knows I'm emotional...just like my Mom.

The refrain rang clear and true...
Radiation Katrina was right...

Funny but we can't trust the beauty of the future until we're living in it. And then the gratitude is incredible.

Thanks Christine!

Year in Review Part Two

Wow, how fitting that I write this on the very last day of 2008. Hard to believe that this year is all but over. My sentimental side gets the best of me at this time of year and so hence this look back...

I've become aware of the fact that writing this year in review blog may just take the place of one of those annoying holiday letters you get in the mail.
You know those people who write you a Christmas Card and slip in this really gag-worthy...Johnny got a promotion...Little Suzy is the smartest kid in her class, We're going to Cabo San Lucas and you're not update letters. Well, I just thought of that and I apologize if my year in review resembles that because that is not the intention. Ehh...what do you care if this is a snore...go back to facebook.

The summer of 2008 was a particularly memorable one for a couple of reasons. To start things off, my sister Mary got engaged to her boyfriend Karl. Mary asked me to be her maid of honor...and of course, I was honored to accept the duty. My little sister is getting married in July. It has been widely acknowledged publicly that a dance-off will take place at the wedding...between my brother in law to be and myself. There are bets now being taken as to who will win...but I have to say...I am taking this very seriously.

Also this summer I began working with a great organization called Melissa's Living Legacy Teen Cancer Foundation (Teens Living with Cancer). They are an amazing organization that helps support and guide teenagers through the unique challenges of cancer during that difficult life stage of adolescence.

On the way to the LiveSTRONG Summit this year Mom and I took a roadtrip.
The goal was to rack up three states...putting my state count to 29....so I'd be that much closer to making my 30 in the 30th goal. I have to say it's one of the ways my Mom is so special...just being game for such a crazy adventure because she knew it meant something to me.
I broke in my new (to me) car Smurfette (yep she's a blue Hyndaui Elantra) on this trip and I added Illinois, Wisconisin and Indiana to my state roster. I think the highlight had to be a visit to the Indiana Dunes National Park.
As an environmentalist, my Mom had always taught me an appreciation for the treasure that we have near my aunt's cottage at Pine Grove (Selkirk) on Lake Ontario. To the unschooled dunes might just seem like really cool piles of sand...to someone who truly understands they are a sanctuary for unique species of birds, plants and animals. Supposedly, Indiana is the only other place that you can find sand dunes near fresh water. Fortunately their dunes are protected by state law and federal law...unfortunately for the residents of Selkirk can all attest to the fact that the sand dunes there were not at the time most of them were mowed down by development. We can all think the Brennan Dynasty for that environmental wallup.

That roadtrip was all combined with making my way to the 2008 LiveStrong Summit in Columbus Ohio. I attended as one of 1,000 delegates across the country. Mom spent the first evening at the Summit and both of us were able to hear John McCain speak along with Lance Armstrong and Paula Zahn in a townhall specifically dealing with cancer. We won't go into my own feelings on what McCain had to bring to the table on this issue...but let's just say I wish Obama had been there to share his thoughts.

I met so many amazing people touched by cancer in so many different ways...survivors, co-survivors, non-profit professionals, people in the medical field. Everyone had one goal in common: to make cancer a national priority. I'm Too Young For This was well represented there. Okay so hanging with Lance Armstrong was pretty cool, but we didn't really hang out..he was kinda busy (Kate Hudson was in town). The true big bonus was linking up with a huge group of i[2]yers from all over that congregated there.
That weekend was absoultely amazing...in edition to the knowledge, training and networking it offered, I made some amazing friends there in Columbus.

I have to say the summer was pretty action packed right to the last drop of fun. My friend Jenise had a birthday party that rivaled all 30th birthday parties on August 30th at the New York State Fair no less. Her sense of humor and tongue in cheek whimsy is obvious in this birthday party invite.
Summer came and went...but the fall was pretty crazy too. Nicole, my right hand woman in our i[2]y group got us registered as our very own kickball team in a tournament. That's right...a team filled with cancer survivors! We wanted to show everyone what a bunch of cancer survivors can really do! Yeah! Boo-ya! Well, okay we did get our butts kicked... but the team playing us had a slighltly unfair advantage---a former Rochester Rhino playing with them.

September was the most amazing Light The Night yet for Leah's Line-up. Our team together raised more than $3,000 for the Leukemia Lymphoma Society. I was an ambassador of Rochester's walk along with an 8th grader named Tony. Tony and I had a lot of fun shooting the commercial at Channel 8 with Elizabeth Harness, this year's spokesperson. We had a pretty darn large team this year and everyone helped make it a success, even little Lucy (AKA Leah's Magic Medecine) who was so tuckered out at the end of the walk that she took a nap.

Another milestone was acheived in 2008---My 30th state! Back around the time of cancer diagnosis #2, when things were darkest, I'd made this something on my bucket list and I was determined to do it! I'll have you all know that the state that made the 30th distinction was ---drumroll please...Connecticut. I happened to share this special occasion with my best friend, Jillian which made it even better. She wanted to help me get this 30th state done so we hopped a ferry from Long Island to Mystic CT...and in late September mission accomplished. I've always loved watching the movie Mystic Pizza so our trip included a stop in the actual Mystic Pizza restaurant. Jillian and I ate our fare share of pizza in college...and sadly for most of those four years at Bonaventure a decent slice was hard to come by. Jillian has on more than one occasion proved to me that New York City and Long Island make the state's best pizza. However Mystic Conneticut isn't doing too bad for itself. Yummy!

In October...I ventured back to my alma mater to do a presentation with Curt Balch where we spoke to students on the issue of young adult cancer survivorship. St. Bonaventure was incredibly generous with their support of us and of I'm Too Young For This as well and proved it with a fundraiser for i[2]y that following weekend.

Just a few days later was the annual dinner for Melissa's Living Legacy. It was quite a busy weekend with Sean Swarner the guest speaker for that event in town. This Ironman/mountain climber was even nice enough to throw in a speech for students and staff at my school. Sean was kept hopping that whole weekend and never stopped smiling even through the garbage plate he devoured just hours before his keynote. He also inspired me to do something I never thought I'd do. I climbed to the top of a rock wall. That's right...that same girl whose fear of heights kept her from climbing trees as a kid. Originally, I thought I'd hang out at the bottom with other spectators.
I made a pact with i[2]y founder Matthew Zachary...he'd do it---if and only if I did it. Ask Matthew--that promise was kept. He proved to all of us i[2]yers that there's a little mountaineer in everyone, even the uber technologically inclined.

One of the most memorable moments of 2008? Right up there had to be my friend Zach DeRidder winning the LiveSTRONG video contest. He was the little engine that could and he grabbed the votes and hearts of people all across the nation...maybe across the world. We are sooo proud of the Z-Man!


Okay, I'm running out of time...and you're likely running out of patience reading this so I'll cut to the chase...there were some other cool things about 2008...like turning 31...which I thought would be painful...but actually was not. I could tell you about the blizzard of 2008 which was not so cool. It cancelled my plans to journey to NYC December 19th. That was a major bummer. I was so looking forward to seeing Rockefeller Center lit up for Christmas and of course congregating with some fellow i[2]yers. But we won't go into that...it's just going to make me sad again.

Instead I have to just focus on what's ahead for the new year. I'm jumping into 2009 with a fresh perspective on life that 2008 helped bring about for me. I'm feeling more and more like things are headed in the right direction...it may take a little elbow grease and a little faith on my part...but I have high hopes for 2009. Lots of things to accomplish...and lots of memories to make.

For all of us looking at a new year...and thinking about what we'd like to see in it...remember...
Life is really like a sandwich...so you have to enjoy those big bites. Every bite!
HAPPY NEW YEAR!!