Fight or Flee

Seems like lately I've been more on the fleeing side than fighting. Probably because it was this time last year that things really hit the fan. Bad news seemed to come daily, and there was nothing we could really do. I admit, it's a tough time. Not just for me, but for everyone in our little circle that are under constant reminder of what was going on a year ago. I never stopped to think about people that helped us... I have a better idea now of what it is like to be on in the inner circle as opposed to being in lock-step.

This past week... it did seem to be too much.... too much loss, too much pain and suffering with no answers at all. I honestly had no idea what to do with myself. Because you do lull yourself into thinking that you're dealing well with everything and that you're getting used to it. But you don't. There will always be moments when you painfully long for what you've lost and will never have back. And damn it... those moments always seem to hit you at an unlikely time or place (see last year's Smoothie King post).

I was with one of my friends who didn't know me during my time with Dan. And has no real knowledge of what happened other than the bits I've told. I am not one to dwell on anything... one of my favorite movie scenes is in Jerry McGuire. Jerry and Dorothy are having dinner and they being talking about things in the past. Dorothy stops Jerry and says- "Jerry, let's not tell our sad stories." Well, that is pretty much me. I don't like people giving me looks of pity when they hear what happened to us. I REALLY can't stand it. Anyways, I happened to really lose it with my friend, and the comment was that he was glad to see that I was finally human. That I am not immune to emotion or anger. And that I am allowed to be fed up and angry at this disease and the loss it leaves in its wake. . At that moment, I really felt like it was better to flee. To pack it up for a bit, and just go on and not think about cancer. But as my friend said- People can't help or relate unless you help them to relate.

As I was thinking about it, I realized how much I've been forcing other things to "fix" my problems. Fix me, I guess. Work, the foundation, traveling and my favorite- shopping :) Even just crossing days off the calendar thinking "At 6 months, I'll feel like this, and by the time a year goes by I'll feel so much better. I keep waiting for a golden moment when I would know something had come along to fill the void or save me. And then as I was organizing my office, I started reading one of Dan's speeches. And there it was in his writing... there are times when the challenge seems too tough... we hear of another friend or co-worker who is diagnosed, and unfortunately, not all of them make it.... these challenges are our moments for us to see who we really are and the people we're meant to be. That's why I love him- Dan always knew the right thing to say!

Yes, dealing with my loss is tough. And having people I love go through the same things now that I did... it's enough to make me want to pull the covers over my head. But in doing that, I'd be losing the opportunity to take what happened to us and do something for someone else. Fighting is really the only option. No one likes a quitter, especially me. So instead of fleeing, I'm going to look at the moments when I need to step back as just re-grouping. Even Rocky got knocked down out by Clubber Lang and lost his beloved Mickey and started to doubt himself. But he re-grouped, stepped back and admitted that he didn't know what to do when he started questioning everything he knew. But he got back in there, using a new way of thinking & training and of course, took out Clubber Lang (see Rocky 3).

So I am in re-grouping mode- which is good, because there is much to fight for...

PS- There is a Coldplay song that I had been listening to... "Fix Me". I was listening to it tonight, and I used to think that it would be nice if someone came along and sang it to me. And then, in-line with my new way of thinking... I decided maybe it's more about saying these things to yourself and knowing that you can fix yourself. Lyrics below...

When you try your best but you don't succeed
When you get what you want but not what you need
When you feel so tired but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you cannot replace
When you love someone but it goes to waste
COULD IT BE WORSE?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I

Tears stream down your face
I promise you I will learn from my mistakes
Tears stream down your face
And I

Lights will guide you home
And ignite your bones
And I will try to fix you.

2009-2010

I hope that everyone had a wonderful holiday and New Year. The past weeks were filled with activities for me, and I was blessed to spend them with family and friends. Many people expressed to me that it must be a hard time for me. I definitely found myself reflecting on the past year and all that happened- good and bad. Christmas decorations went up, we cut down our trees, shopped, sang carols, opened gifts, rang in a new decade. And these moments were no less special, but I was always aware that someone was missing. Not in a painful way for me, but there were times when I did expect Dan to come in the door wearing his green ski hat bragging about a gift he'd bought or excited that the snow was falling. It is shocking how time passes, and how quickly it goes. His nieces and nephews are growing, and he didn't see the changes. He would have loved every minute of the holiday season, and well, it just doesn't seem fair he wasn't with us. But, I can never sit and think of these things too long because that wouldn't be fair either. To either one of us.

Perhaps the oddest thing to me is that it's now 2010. No longer 2009- such a formative year. I can honestly look back and be thankful for what that year brought. Last Christmas, I didn't know who would be in my life once Dan was gone. It was a very lonely feeling at the time, and I remember us talking about it. We didn't know Dan would be gone so soon after we celebrated, but there was a moment when we could sense it. How was I to know that those fears would never be realized. Dan's gift this year was his wonderful family that I consider my own, and his friends who have become mine. And his mission that will always be a part of me. I can look back and feel so thankful for his love and support. That won't leave me- ever. Memories that should be painful, particularly of his last few weeks, have taken on a new meaning. Sitting with his brother Bobby when Dan was in hospice, spending an evening playing board games with Patrice and James when Dan was still cracking jokes and getting mad he was losing, praying with Holly & Cindy the morning he passed... those are very special and poignant memories now. Even as he neared the end of his life, Dan allowed us to come together... he was a catalyst for such a change and awakening in my life. I am sad to see 2009 go- it was the last year he was here, and was filled with such hope, determination and love. It is hard to say goodbye.

Cancer can't rob us of these moments. In the past few months, cancer has been a consistent presence in my life. My dear friend lost her father after only 3 months- to lung cancer. They weren't granted the gift of time that we were, and it was a tough road. I sat in the same church where Dan's funeral and watched my friend speak about her dad in the same spot I had stood only months before- how is that possible? Our dear family friend is currently undergoing chemo, and I went to her first chemo appointment at Hopkins in late December. Back on familiar ground... it was oddly comforting. Yes, there were dark days there, but Hopkins was also such a huge part of our relationship. We spent more time there with family and friends than anyplace else. And we loved to get Rita's italtian ice on the way home, and talk about everything and anything under then sun. I hate to see other people go through similar things that we did- the fear and uncertainty and the randomness of bad things happening to wonderful people. I realized that I can't ignore cancer- not that I ever would. And I am reminded of how powerful the connection is for those that have been on the inside. Some things can't be explained on that front, but when cancer comes around now, I am there, ready to swing for the fences, hold a hand, cry with others... do whatever it takes to make it just a little less scary. For me- 2009 was the year of cancer... my largest and now continued exposure to the disease. But as I said, cancer can't take away our love, hope, laughter & admiration for one another- but like Dan, it can be a catalyst for good things as well.

The holidays are often a time when we wish peace for each other. I don't know that I will ever be at peace with the loss of Dan. I get to move on and have these moments, but he doesn't. His restless energy visits me often- I know when he is around. And I rather like it... because there is much work to be done. Yes, as a cancer advocate. But also as a good friend and someone who can lend a helping hand or just a feeling that someone doesn't have to be alone. I am still learning what this whole experience means, and will be for a long time to come.

So, I am not making any resolutions this year. Any day is a good day to wake up and decide to make a change or do something new. No excuses because life is really way too short, and even if you go through something awful... life goes on and a new challenge will be presented.

I thank everyone for the love and support this year... I didn't get around to doing Christmas cards and am way behind on many things. But I am getting there, and I have all the wonderful notes and cards hanging up- from new family & friends, and the old.

I wish everyone a great year. For those that lost Dan or someone else they loved- I am sorry they weren't there to celebrate with us physically. But they are in our hearts- always.

Spirit of the Holidays

More about me later... this story is really what the holidays are about. Even those living with cancer just want to celebrate and do all the normal things that others can. I am passing along a note I received from Brock at the Ulman Fund....

On Monday I was at the University of MD Greenebaum Cancer Center and my co-worker and I asked a 21 year old girl we’ve been working with what else we could do to help her while she was waiting for her test results and she said,

“A Christmas present for my 5 year old daughter”

This nearly crushed me and I said to her, we can do that and will do that! This young girl isn’t the only young adult in need and we need everyone’s help!

The Ulman Cancer Fund is adopting over 10 families for the Holidays by getting gifts donated for the children of several young adults currently in cancer treatment. Most of the families are of young adults we are working with at the University of Maryland Greenebaum Cancer Center and within the Region. The families live in Baltimore City , Howard County and the Washington , DC Area. The kids range 8 months to 12 years.

Visit to this link to learn more about some of the family’s situations and their kids ages and sexes and how to donate: http://www.ulmanfund.org/GetInvolved/DonateGifts/tabid/758/Default.aspx

We are accepting gifts until Thursday December 17 and will be delivering the gifts to the families on Monday, December 21. If you can’t donate a gift due to time or geographic challenges, we are accepting donations on-line and we will be purchasing gifts with these donations for the families.

Please chip in if you can and forward to any friends who may be interested.

Thanks & Happy Holidays!

We Need a Little Christmas Right this Very Minute

I know I get pretty serious on this blog. So I wanted to share a nice story, especially now that we've entered the holiday season.

Today I received a letter from a young woman. For her 8th grade confirmation, her parents gave her the gift of money that she could use to donate to a charity of her choice. She wrote that she went through a long process to narrow down the charity that she wanted to donate to. She chose NCCF because she liked the fact that we strive to help young adults with cancer. She felt the "Waeger Will Win" attitude really makes a difference. So she and her family donated $400 to our cause.

I was really touched by this. First, I was impressed that her parents used what could have been an opportunity to give her an ipod or other material item as a way to teach her the benefits of being charitable at a young age. Second, that she came to the decision on her own after giving it a lot of thought. And third, and not last, that she chose NCCF.

I admit, I can be a little cynical sometimes. But receiving this letter and donation was just a wonderful gift that reflects the spirit of the season. And reminds me, and hopefully us, that Dan's message is still powerful.

So thank you Veronica!

Giving Thanks

Hard to believe last year we were thankful for good scan results and no chemo so Dan could eat Thanksgiving dinner.

People say that the holidays are hard. I don't think they are particularly easy, but last year was no cake walk. Dan was very sick, and even with some good news, I could see that the situation he was in was not going to be sustainable. And we certainly weren't able to celebrate the holidays as we had the year before... so I was already aware that those days were gone and probably wouldn't be back.

Of course I miss Dan- we all do. But I am thankful that he is not suffering anymore. I have been very sick for the past few days with a terrible head cold. I was coughing all the time, and couldn't sleep through the night because of it. After the third night I was plum exhausted and wondering what I was going to do (thank you, cough medicine + codine!). But I couldn't really complain, because that was our reality last year... Dan was coughing, all the time. In the morning, he would have to sit for almost an hour to wake up, cough, clear and be in shape to move. All day- the cough. Sometimes he would be frustrated. He took that narcotic medicine like clockwork. At night, he slept sleeping straight up to prevent build-up in his chest. Straight up against a wall or the high arm of the couch. And he slept in only 2-3 hour bursts, which meant that I slept in the 3 hour bursts, even though it became impossible for us to sleep in the same bed. I insisted we did for as long as possible- I didn't want him to be coughing alone. The cough was exhausting for us both, but it used to break my heart for him. Aside from the physical discomfort it was a very telling sign that the cancer was there. But he didn't let it stop him- he still wanted to go to work and run NCCF.

So, I am thankful Dan is not coughing, and I that I will recover from a cold after a few days. The human body is amazing.

Just few more things I am thankful for-some big, some small

- Friends & family (without saying), especially the ones who have let me take my time in opening up and don't judge me. And those that don't forgot that my life will never be the same.

- My nieces who bring total joy to my life and remind of the childlike enthusiasm Dan had every day.

- An understanding and kind employer. Plus, people that work there who are smart and collaborative. Never would make it without this one!

- Tights- nothing better than being cozy in the late fall

- The Biggest Loser- how can you not be motivated when you watch this show (Dan's favorite)

- The new Caramel Brulee latte at Starbucks. I am obsessed- totally not good for me, but so yummy and brightens my day.

- The gym- I hate it some days, but my workout mix on my ipod is so cheezy that I don't ever seem to mind. And it always does the trick. Plus, I have a lot of triathlons this year!

- My smart choice in having more than one NFL to root for... if I only had the Redskins, I would be so miserable right now!

I wish you all a happy Thanksgiving. I hope you will spend it surrounded by family and friends, and feel the warmth of those that aren't with you. And for those that will be missing Dan or anyone else they've lost....

May their strength give you strength.
May their hope give you hope.
May their faith give you faith.
May their love bring you love.

(Thanks Boss).

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.