The Work Goes On

It has been quite a busy few weeks. Last week, I had the opportunity to attend the annual meeting for the Livestrong Young Adult Alliance. NCCF was one of the founding organizations, and Dan always looked forward to these meetings. I think he just liked flirting with all the girls ;) This year was my first year going "on my own", and I was so happy to see friends that I've made over the past year. And the meetings are an incredible opportunity to learn and debate issues facing the young adult cancer community. Granted, I am always aware that even though I've seen a lot of cancer, I really have no idea about certain things because I've never had cancer. So I listen a lot ;)

November is also lung cancer awareness month. Although lung cancer isn't among the most prevalent types of cancer among young adults, there are a lot of parallels between the two communities. Both are somewhat ignored by researchers and funders. Both are incredibly isolated and orphaned. Some days I feel painfully aware of how far we have to go on both issues.

This past Sunday a group got together to attend a walk on the National Mall to support Lungevity, an organization focused on raising research funds for lung cancer. The walk was organized by Jerry Sorkin who is a stage IV lung cancer survivor still living with the disease every day. I met Jerry back in May when both of us when to the Hill to drum up support for lung cancer legislation. Jerry decided he wanted to do something during lung cancer awareness month. But there were no local DC walks or galas. None. So Jerry got a group together and organized the walk. Along the way, he also raised $250,000. Which is really amazing- just one person wanting to make a difference who inspired others to come together and well, just do something about lung cancer.

There were about 1200 people at the walk. Which, when you think of how many people show up for a typical Komen breast cancer walk, is pretty small. Especially when you consider that lung cancer kills more people that breast, prostrate, colorectal and pancreatic cancer- COMBINED. So why aren't there more walks and events? The reality of this disease is that there isn't an army of survivors. Most people who have lung cancer are diagnosed at a late stage and die within a very short time. Leaving families and friends behind to wonder what happened. And then there is the stigma. It absolutely sucks that every time someone hears what type of cancer Dan had, they ALWAYS ask if he smoked. I mean- he was 22 when he was diagnosed... People smoke and get all kinds of cancer, but the perception of lung cancer is that people bring it on themselves. Well, every person I know that has passed from this disease was a non-smoker. And even if Dan had smoked (which he never did), does that fact mean that losing him should be any easier?

So I am so glad we had the opportunity to do the walk. Thanks to everyone who came out and walked with me. Hopefully next year, it will double in size. And it was a good reminder to me that individuals can make a difference, not just organizations.

It Only Takes a Spark

I've been reminded of the words the priest spoke about Dan at his funeral lately. For some reason, it was very important to me that the priest come and visit Dan before he passed. I could not have imagined someone saying his funeral mass without really hearing what Dan was about... the words would have been empty to me. The irony of the visit was that the priest was so taken aback upon meeting us that he didn't have much to offer. Obviously, our story was so tragic on first glance. But as the priest spoke to Dan, you could see that he was taken with how hopeful and at peace Dan was despite the fact he was nearing the end of his life.

The priest did not let me down. I thought he described Dan's journey beautifully. He said that when Dan was diagnosed, it was if God led him into a dark tunnel and gave him a single candle. God then sent Dan out into the world, and with that one little candle, lit up the darkness by inspiring and helping others. I think of those words often- sometimes when I see people still wearing a green bracelet or sending me a note or text message because they know that 8 months isn't even the beginning of this journey.

But I have been astounded by those that are coming forward to continue Dan's work. Take Sarah and Dana who raced this summer in the Irongirl (Dana) and the Baltimore Half Marathon (both). They came to me and said they wanted to raise money, and that I didn't have to really do a thing to help them. Sarah hadn't even known Dan all that long. Together, they raised close to $3,000 for NCCF.

And then there is the Persak family, good friends of Dan's since childhood. Last year, Mr. Persak ran a marathon and Dan was pretty impressed. Warren promised Dan he would run another one for Dan and NCCF. And he then enlisted his three children, all very close to Dan- including his best friend Chris- to join him. So they finished the Marine Corps marathon in late October. After the race, I received this summary from Warren. Together, the Persaks raised over $4,000 for NCCF- AMAZING!

30K runners started the Marine Corp Marathon in Washington DC (21K finished) and there were over 100K spectators. We figured we all ran at least an extra mile maneuvering thru the masses during the run. It was tough, 6 of the 1^st 7 miles were uphill, but it was loud, and fun and the big crowds and bands playing helped keep you distracted from some from the pain. Kathleen and I ran the 1^st 11 miles together (a once in a lifetime memory for us) and then she started feeling the effects of bronchitis she was fighting and had to walk for a time. Chris and Bryan ran it in under 4:15, I finished in 4:44 and Kathleen in 5:20…… If interested, more info is available on the Marine Corp Marathon web site. We all talked after the run and over dinner and it was funny that we all thought of Dan and his struggles multiple times over the 4 plus hours and asked him to help get us thru this run….and we could hear him laughing!

SUMMARY: 4 Persaks running. Miles in training: 1000+, Shoes- 8 pairs (all well worn) - $500, Entry fees - $320, hours in training- lots, sore heels, knees….ect – all (but especially the old guy!), stupid heel arch relief wrap -$20. Helping NCCF help young adults beat cancer – Priceless!

And as I write this, I am working with over 25 people who want to be involved in NCCF's mission. I am reminded of words Dan often spoke- some days, it seems the challenge is too tough, too daunting. We hear about another family member, friend or co-worked who is diagnosed. Many of them survive, but unfortunately many do not. In these tough times, we must remember that life's challenges are not supposed to paralyze us and bring us down. But rather, they are supposed to help us discovery who we are and the changes we can become.

Those of us left behind are surviving this disease, too. But we are also following the light that Dan left us... the hope he gave us in all that darkness. I am reminded of a song we sang in Church when I was growing up- I think it describes some of what we're seeing with so many still passing on Dan's light-

It only takes a spark to get a fire going,
And soon all those around can warm up in its glowing;
That's how it is with God's Love,
Once you've experienced it,
Your spread the love to everyone
You want to pass it on.

Quiet Time

I know I've been a little quiet lately. It's not that I haven't had things to write about... I have a bunch stored up. But, after spending the first 7 months so insanely busy, I realized that I wasn't paying enough attention to the grieving process. Pushing things aside too easily. Now with the golf tournament over, and fall settling in, I've been trying to force myself to sit still and "just be"- trust me, it's not in my nature.

You can't really speed through grief, and it's kinda irritating. It's like a bucket with a hole in the bottom- you can fill it up, but it's not enough. So, sometimes you just have let that bucket run empty. Kinda scary, really. It's not realistic. I've been told I am a good griever... because I give the impression that I can do it all and handle it all. Truth be told, a few months ago, I found myself sitting on the floor in Borders for hours reading books about grieving. I kinda scoffed- checking off the steps. Or just thinking "nope, not gonna make that mistake". What I realize now is that I was probably skipping some steps based on sheer will and determination. But I think I may need a remedial course on some points. I don't feel less positive, just more aware. Maybe more ready to acknowledge what we don't talk about as much. Mostly because you'd never want anyone else to feel what you do in these situations.

As I was reading my daily dose of gossip, I came across an article on people.com about a women's convention that was chaired by Maria Shriver. Patrick Swayze's widow was on a panel and spoke about her grief. I just thought some of the points were right on... I really applaud the women for speaking out on this issue, because too often we don't. We hide these things away, which is what I've been doing. Fortunately, I have a good group of people in my life who let me call (which many know is one of my challenges) in the middle of day when something else stupid comes up, and let me talk about the stupid thing until I realize what it is I am really upset about. Anways, here are some of the quotes.

"Loss is like an animal all of its own and the sadness can be felt on a cellular level."

"Grief cracks your heart into little pieces and that hurts, big time, big time. It's hard to concentrate, it’s hard to see, its hard to feel, it's even hard to breathe."

"Every minute of every day I can feel my broken heart. I tell all of those close to me, 'Don't worry, I'm fine, really, I am.' … The real truth is, I'm not fine. The real truth is that death has brought me to my knees."

People probably wonder how Dan & got through all that we did. Many don't even know the extent because we kept a lot to myself. When talking to people that are going through the same thing now, I say to focus on the day, and the issue at hand. The overall picture can be too daunting. And it can't be solved in a day or week or even a month. Focus on getting through the doctor's appointment or treatment or ER visit. That was the way we dealt with it. Perhaps I should listen to myself sometimes ;)

Walk On

I have loved music my whole life. I can't sing or can't play an instrument, but I have a knack for remembering lyrics and making great dj mixes. I get some of this love from my parents. From an early age, I remember our house being filled with Simon & Garfunkel and James Taylor. Every Christmas, my dad gathers everyone around and we all sing Christmas carols. If you ever end up in an Irish bar with my family during a good "session", chances are you'll be schooled in our love of Irish music and folk songs. And there is nothing I enjoy more than a good jukebox, cold beer and a good friend to sit and try to one-up one another with cheesy or obscure tunes.

When it comes to certain moments in life, I can usually tie them back to a band, song or album. I kept all my mixed tapes from high school. I probably have a song that I associate for each friend I've ever made. They may not know it, but the song was playing or sung during a key moment or highlight in our relationship. For me, music makes me feel something or connect to someone in ways I could never say or write myself.

Sidebar-The irony of this is that Dan had very little knowledge of music. His favorite band was a COVER band for goodness sakes! But we managed to have our songs just like any other couple. And I love listening to them.

Music is becoming critical to my grief process. Maybe it's the change of weather, or maybe it's just because I was so busy these last 7 months and now have a moment to sit still... but the grieving process is changing yet again. I have been told I've handled this "brilliantly" by some... not really an accomplishment I'd ever hope to achieve. Yes-I've done a ton... I've thrown everything at the grief... runing, biking, swimming, shopping, traveling, crying, laughing, volunteering, working, speaking... and still, it's tough. It's just plain tough. Some days, it's hard to think what else to do. I feel like I've been trying it all.

So, I've been coming back to music a lot more lately. Workouts are filled with the Back Eyed Peas, Lady Gaga, Katie Perry, Kanye... a whole host of music to make me move. Helps with the anxiety and restlessness

But it's been a reconnection to an "old" band that has been giving me a little bit of peace. A little bit of... "someone gets it". It's probably because I saw two of their shows in the span of 10 days, but I have become obsessed with U2 again. I was just blown away by their stage show, but also by the lyrics to some of their songs. In particular "Stuck in A Moment You Can't Get Out Of" and "Walk On". These songs pretty much sum up my peice of mind these days, so if you want to know how I am feeling give a listen. I alternate between feeling so stuck in a terrible spot, and at the same time encouraged to get moving.

Here are some of the lyrics

From "Stuck in a Moment"

I'm not afraid
Of anything in this world
There's nothing you can throw at me
That I haven't already heard
I'm just trying to findA decent melody
A song that I can sing
In my own company

I never thought you were a fool
But darling, look at you. Ooh.
You gotta stand up straight, carry your own weight'
Cause tears are going nowhere baby

You've got to get yourself together
You've got stuck in a moment
And you can't get out of it
Don't say that later will be better
Now you're stuck in a moment
And you can't get out of it

And if the night runs over
And if the day won't last
And if your way should falter
Along this stony pass
It's just a moment
This time will pass

And from "Walk On"

And if the darkness is to keep us apart
And if the daylight feels like it's a long way off
And if your glass heart should crack
And for a second you turn back
Oh no, be strong

Walk on, walk on
What you got they can't steal it
No they can't even feel it
Walk on, walk on...Stay safe tonight

You're packing a suitcase for a place none of us has been
A place that has to be believed to be seen
You could have flown away
A singing bird in an open cage
Who will only fly, only fly for freedom

Walk on, walk on
What you've got they can't deny it
Can't sell it, or buy it
Walk on, walk on
Stay safe tonight

Waeger Cup V

Waeger Cup V was a huge success!!! It was a great day. So great that I am still recovering. But happy looking at the trophy that Diehl, Serge & Joe brought home for Dan! More later, but enjoy the pictures!

Could my nieces be any cuter?

Our 8-some (well 10 if you count me & Brielle!)

All hail the champs!

Grey's Anatomy

It's no surprise to anyone that I really like TV. Having lived through this side of cancer, it's always interesting to me to see how the disease is portrayed on my favorite shows. For any of you that watched last week's season premiere of Grey's Anatomy, you'll be familiar with the storyline that involves Izzy who was diagnosed with stage IV melanoma. For those that don't watch the show, Izzy was diagnosed very late and the cancer spread to other areas of her body, including her brain. She is blasted with chemo, and her life is ultimately "saved" by a radical brain operation. I have been pretty cynical around the whole story line, because I had expected the show to just miraculously cure Izzy. But they didn't.

In a scene late in the show, Izzy and her new husband Alex are sitting in the oncologist's office awaiting the results. The doctor informs them that the progress in her cancer was fantastic and that it was now "manageable". Izzy and Alex look confused. They ask for a timeline. They want to know when she will stop chemo. And eventually it kicks in... Izzy will have to accept that she will need to live with cancer. She will need to live with chemo. She will need to live with no guarantees.

I know that feeling... when you realize that there is no timeline. There is only time. Forget statistics... you'd be planning a funeral way too early if you do for those with a stage IV disease. That is when you learn what it is like to live in the moment. And when you realize that the enormity of the disease can be too much. So it's easier to focus on what you want to have for dinner or scolding someone for leaving her shoes by the door. Every day is one more day. Forget the timeline. There is only time.

At the end of the show, the characters do a voice over as various scenes play out. Usually I think it's kind of cheezy, but this voice over really got me. So much so that I watched it several times to get it on paper. The topic is grief, and the words resonated with me.

"Grief may be a thing we all have in common, but it looks different on everyone.

It isn’t just death we have to grieve. It’s life. It’s loss. It’s change.

And when we wonder why it has to suck so much sometimes, has to hurt so bad… the thing we have to try and remember is that it can turn on a dime.

That is how you stay alive. When it hurts so much you can’t breathe… that is how you survive…

By remembering that one day…somehow, impossibly, it won’t feel this way. It won’t hurt this much.

Grief comes in its own time for everyone. In its own way.

The best we can do… the best anyone can do… is try for honesty.

The really crappy thing… the worst part of grief… is that you can’t control it.

The best we can do is try to let ourselves feel it when it comes. And let it go when you can.

The very worst part is that minute you think you’re past it, it starts all over again.

And always, every time… it takes your breathe away."

Hit 'Em Straight

Well, it's one week until the Waeger Cup! We should have a great turnout of about 150 golfers (remember to bring your wallets for the raffle and auction!). And PLEASE pray that we have good weather.

It's hard to believe that Dan will not be there (well, physically). The Waeger Cup was such a big part of his survivorship. It gave him something to look forward to every year, and was an opportunity for him to say thank you to all those that supported him, and in turn, his foundation. Now that I've gone through planning my first one without him, I am even more impressed at his drive and desire to make the tournament happen... even in the face of cancer. I am still not totally impressed by his organizational skills, but am a little more understanding now that I have a greater appreciationg for what has to get done.

I think back to last year. Dan had just gone through his first cycle of a tough chemo treatment. I did not think he would even make it to the Waeger Cup. He had no voice. His throat was so sore that he couldn't eat. And the cough had started, making it tough to speak. He wasn't sleeping much. His white blood count was very low, and he was afraid he might get an infection. It was the first time I had ever seen Dan "sick" through all of our time together. And I was scared. Because if Dan couldn't handle it, then well, "it" must be horrible. But he pulled himself together, and he went to the tournament. And it was a good day.

Later that night, we came home and tallied up the raffle and auction proceeds. We were so happy that we'd raised almost $30,000. Then Dan went into the bathroom. He came out a few minutes later, sat at the edge of the bed. He took my hand and said "Babe. I have to tell you something. I don't want you to be scared. I don't want you to be sad. But my hair is falling out." And with that, he put my hand to his head and I pulled a little tuft of his hair. It came out in a clump. It was soft. And of course, there really wasn't a whole lot considering Dan's follicly-challenged head. Dan had told me the story of the first time his hair fell out. But I never thought I would actually see it. If I hadn't known the week leading up to the tournament that he was sick, I sure knew it then. But I remember thinking... what timing! I was glad for him that he got to see everyone looking pretty much like himself, even if he didn't sound like it.

The next day, I was let go from my job. I'll try to stay classy about it, but let's just say it was a horrible situation handled very poorly by months that people I don't have an ounce of respect for in the least. I came home. I made myself a tuna melt and sat on the couch. A little while later, Dan came home and said "We'll go wherever you want for your job. Let's go to New York (I was in media at the time). I can get treated at Sloan." I mean- was he insane? No, he was serious. Even though I knew we'd never leave here, I was reminded that through all the craziness of his illness, I was still his first priority. And of course, the job loss was a blessing because I got to spend so much time with him over the next few months. Anyways, we pulled out the clippers and I shaved a mohawk into his head. As usual, it all ended in a laugh.

I am so thankful Dan was able to go to the Waeger Cup last year, even if he wasn't able to do as much on the course as he liked. It's only fitting in a way that it was the last time he ever played golf. At his own tournament, among the friends and family he loved so much.