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!

Why you stand in line

I won't tell you the frustrating life stuff that's been going on...because it's faded to the background.

Last night was election night...and for the first time in 8 years I felt okay, much more at peace.

Just four years ago I stood in line to vote when any rational person would have been in bed or even in a hospital. I was on heavy drugs...and I was still recovering from my radical neck dissection, still unable to move my neck, feeling and really looking like Frankenstein. If there was anyone in line I went to high school with or once traded laughs with they wouldn't have known it was me. I stood among strangers who eyeballed this strange young woman with the funny looking neck and face...voting.

I had not had the time to fill out an absentee ballot before cancer threw my life into a tailspin...but I had to vote. It mattered to me enough to put aside vanity and comfort to get in line and vote. Waiting in line, standing even was excrutiating.
But in 2004 I did...and at least I know I cast my vote.

Whether it was the heavy strength pain killers or just the raw emotion of standing in line when I wasn't really physically able to do so...I cried like a crazy girl watching a Steel Magnolias, Beaches Marathon after results came in.
But I had NO regrets because I had been there. But still it's hard to swallow such frustration at such a time. The issues of health care that were cornerstones of my voting choice were issues I now stood in full force...living a life I couldn't recognize. And the end of 2004 felt like the precipice of another 4 years of fear and anxiety.

Last night...four years after that voting day...I cast my vote again, healthy, strong and feeling that I had weighed all options and thought about my choices long and hard. This time I quietly slipped in among the crowd. Cancer's scars have faded. But life is very changed and I am four years wiser for it. I can know, in every fiber of my being, that this mattered to me in a very different way...it mattered again and I never will take this right for granted. Electoral college or not...red state or blue state, standing in line with 131 million Americans strong...whoever our choice was...truly is the only place to be on the First Tuesday in November.

What do Everest climbers eat when visiting Rochester

Sean Swarner came to speak for Melissa's Living Legacy's annual benefit, supporting Teens Living with cancer...the website I am currently working on web content for. One of many projects.

Not for anything, but what a fun weekend. Sean is a delight and if you want to book him to speak for you take my word for it, he's a package deal...entertainment included.

Here he is sharing his nutrition knowledge with none other than Matthew Zachary, founder of I'm Too Young For This, who flew in from San Fran (where he was shamelessly networking at yet another conference) to attend. We told Sean that garbage plates were like the Rocky Mountain oyster equivalant of Rochester cuisine...he bought it...and so then decided he was game. He ate the ENTIRE garbage plate.
I have to give him real props for that.

And if you don't think this proves that he is an Ironman he then decided to give a speech just hours after this. And I was in the audience he managed to keep the stomach churning and gurgling really low on the white noise meter.

EDITORS NOTE:
Subsequently, Sean is no longer planning the adventure grand slam...he is in bed with a bottle of Maalox, thinking to himself...gee, that God forsaken place where they frequent eat mushed picnic food on a platter for fun....I survived cancer...twice...survived the Seven Summits and the Ironman with one fully functioning lung and now---done in by this. All homage to Nick Tahoe

Where is Obama?

It is now a little over 2 weeks until the Livestrong Summit.
I am so excited about it and I've drawn a circle on my map with Columbus in the center. I will be one of 1,000 delegates who will represent a desire to make cancer and issues related to survivorship a national priority. But there's one thing I can't quite get out of my mind.

As of this blog Senator Barack Obama has not confirmed his appearance or participation at the Summit. Senator John McCain is slated to speak in what is being titled a Presidential Townhall on Cancer. But where is OBAMA?

I've written several empassioned pleas to the Obama camps' websites and only get those cheesy automatic form letters back asking me to contribute to the campaign. Wait one minute. Obama is my guy, and I'm not ashamed to admit it...but he sure is letting me down if he doesn't show up in Columbus. What else could he have to do that's more important than this? He's making me hold my breath here...

It is so vital for the masses gathering there in Columbus to see what Senator Obama brings to the table and to know his plan for the 10 million cancer survivors of this country.
I can't imagine what could be more of a priority than making this powerful statement to those of us in the audience. There just isn't any other way around it. In order to make it clear you place cancer as a priority it's a no-brainer. But what is keeping him from signing on?

Accepting this challenge to speak out before this strong coalition of survivors, advocates and crusaders is the ultimate gesture of commitment to their fight. With this one step he would clarify his position, not just under the generic umbrella of healthcare but on a disease that takes 1,500 American lives every day and forever changes millions of others who survive.

I am afraid Senator Obama might send a strong message without saying a word. I'm not saying that this could lose him the election, but frankly, would you want an audience to think your opponent has the better plan simply just because you don't show up?
We know he has a plan...we just want to hear it.

WE'RE WAITING FOR YOU TO SIGN ON THE DOTTED LINE...Senator Obama

Will we SEE YOU IN COLUMBUS?

Lifetime Television needs to listen

There has been a major campaign by cancer warriors to try and save Lifetime Television's Side Order of Life. Somehow despite the numerous internet postings, the swell of heartfelt support, the unprecedented buzz, empassioned letters, emails, blogs, comments, phone calls and all out outcry...

Lifetime has not moved to renew...yet.

But no one is giving up.

Especially not Diana Maria Riva, the actress who plays Vivy, cancer survivor extrodinaire and Margaret Nagle, creator of the show. To date I have received emails from both of them and they continue to fight hard because they know how much this show means to cancer survivors like me.

If you are a cancer survivor, a friend or family member of one and you believe that the media should start portraying the journey responsibly...you have a personal stake in this.

Let's speak out against mindless reality tv and tell the world we don't accept heroes in the form of Paris Hilton or Britney Spears. We need real and heartfelt characters on quality and well written shows.

Even if you have not seen Side Order of Life...take a moment and call Lifetime today. It is our absolute right as to demand that quality and conviction return to television.

Sitting back without speaking is the same as apathy. CALL LIFETIME AT 212-424-7000

awesome people

Ask anyone at our bowling night last night what kind of bowler I am...and you'll be greeted with a stifled smile and a under-the-surface snicker. I stink.
But last night's get-together was so way beyond bowling or scores...although there was some discussion at the end of our meeting of assembling more serious bowling event in the future.
But bowling was just the backdrop for total inspiration.

Our group of young survivors here in Rochester is so amazing, as a whole and individually. I feel so privileged to call them fellow survivors and friends. Everyone is from different walks of life but all of us share so much. From the survivor currently in treatment to the survivor who is just about to celebrate 10 years kicking cancer's arss to the survivor who felt guilty because she had the 'good cancer'. By the way, if a doctor is reading this: never tell your patient they have the good cancer. That is just bad taste all around.
Our journeys are a fabric of a movement across the country to get busy living. I am proud to know Matthew Zachary (although we have yet to meet in person) and I am so totally motivated by the fact that his brainchild is about handing leadership to young survivors themselves.
His attitude is kind of like if we're cancer's red headed step-child than let's take the reins ourselves. That's the attitude that is shaping change.

Cancer charities are so abundant and the attitude is that every need is filled. But we need to realize that their are gaps programatically and demographically in these services. We must hold everyone accountable for the untapped need and make our community aware. In young adult outreach this is truly the new dawn of realization. I'm Too Young For This, Planet Cancer, The SamFund, the Ullman Cancer Foundation...take your pick. All of these organizations are so in our corner. And I have to say when someone's in your corner it makes you want to step out of the shadows.

Paging Michael Moore

I was facebookin' it this morning and an ad for John Grisham's new thriller popped onto my field of view. I couldn't escape it. The title. The Appeal.

The title stopped me dead in my clicks. The Appeal. Now this timing could not be more on target. I am in the midst of one of these with my HMO.
I grappled long and hard (well all of five minutes of key stroke,delete, keystroke delete) with the decision to actually write this down on a blog. I guess when you wear your heart on your blog for some things it's hard to not to do the same for others. Especially, something that I feel so strongly about.

After my radical neck dissection, my neck and face were changed, well radically. After they slice you like a tuna can from ear to ear and remove muscle and tissue, and a hockey team's worth of lymphnodes things do change. The natural outcome, aside from obliterating the mutant invasion of cancer is not so pretty, even three years later. Now that I am in the clear with cancer numero uno and numero dos I decided to do something about it. My doc and prospective plastic surgeon warned me that I would be denied even with his letter and explanation. He was right. Denied. I appealed. They denied. Even with a letter from a state senator, picture documentation and persuasive letters from others on my health dream team. Of course they did. I was prepared for this, but not so soon. Just four days prior to getting my appeal decision I had gotten a HIPPA form to sign. You guys all know that. HIPPA, hippo. WTF. I was getting ready to put this in the outgoing mail when that day's incoming mail brought me my lovely little letter with attached thick packet to take it to the state level if I so choose.

Somewhere in some dusty HMO basement is a big rubber stamp.
Before things had to be all "P.C." they'd spare themselves the trouble of crafting these touchy feely letters to Jane or John Doe and just stamp it on the top of a big blank page.
NOT MEDICALLY NECESSARY
It might as well have said "sucks to be you", "tough luck chump", "invest in a good psychiatrist...but we won't pay for it."

So with that said, you might even be siding with my HMO if you are looking at it from the "business" of things. Yet, let me ask you if you have ever heard of the Women's Health and Cancer Rights Act of 1998. It allows women to receive breast reconstruction if they so choose after a mastectomy and their HMO must pay. Good move. As a friend of several breast cancer survivors there's no doubt in my mind that this should have been passed long ago.
We are approaching the 10th anniversary of this landmark decision. Yet my question remains- is a reconstructive or corrective procedure only limited to one kind of cancer? Do the psychological affects of a radical operation somehow lessen because it wasn't my breast?

As I spoke to my patient advocate on the phone I realized I was not preaching to the choir.
Naturally, I'm not feeling the advocating vibe from a woman whose salary and benefits are paid for by the folks that are denying me. Over the phone the aforementioned HMO "advocate" misidentified several key pieces of information in my appeal. She even incorrectly identified my before picture taken prior to my neck dissection as the after. She had the nerve to say "I fought for you." Sure. I'm not an authorative person...I tend to be tenderhearted, but lately I've felt the lion coming out when I stand up to these HMO paper pushers.

For the Blue Book suggested retail value of a 1988 Yugo I have the chance to have something corrected that was a undeniable result of cancer extraction. DENIED. Go figure. Now I am thinking they may not have heard the last of me.