Friday, December 11, 2009

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!

Wednesday, December 2, 2009

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!

Wednesday, November 25, 2009

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).

Tuesday, November 17, 2009

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.




Monday, November 9, 2009

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 1st 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 1st 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.




Wednesday, October 28, 2009

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 ;)

Thursday, October 15, 2009

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

Wednesday, October 7, 2009

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!

Wednesday, September 30, 2009

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."

Thursday, September 24, 2009

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.

Tuesday, September 15, 2009

Six Months

Well, I guess tomorrow is the official 6 month anniversary. Not that I am a big believer of really tracking these things, but I feel it's a good time to just reflect on some of the things I learned. And I need to force myself to sit still for a few minutes because I have been busy!!!

So here goes...

1. I think the best advice I got was that I needed to drink 8 glasses of water. At the time, I was really puzzled when someone wrote that to me, but in a seeming unmanageable situation, you have to start with the basics. Don't over-complicate your life. And focus on taking care of yourself, which includes eating and exercising. Of course, you can eat all the ice cream you want every once in awhile but not all the time.

2. I had no idea how hard these six months would be when I think back to wondering what they would bring just before Dan died. Months 1 & 2... I have no idea what I was doing. Months 3-4 were brutal (someone did warn me that these were the worst), and Months 5-6... you start to see the light. I will never, ever tell anyone I know how they feel. I will never presume to understand someone else's loss. I will never judge anyone going through something like this in terms of what they should or shouldn't be doing. Because I had no idea what to do with myself. You can't control the situation, so you just have to pay attention to what your gut says.

3. The administration that comes with death is just awful. Do yourself a favor, married or unmarried... get your house in order. Write down what you want done because you don't want to leave it to interpretation when you're. It cost almost as much for Dan to die as it would have to have our wedding. Ironic, sad but it's the reality. Get life insurance- you will need it! (note: we had it)

4. The worst part of the day for me was waking up. Just like Bill Murray in "Groundhog's Day", I would wake up, and hope for just a second that this wasn't my life, and then realize it still was. I hated waking up!!! What helped me- simple retail therapy. I have basically replaced (well, doubled) my wardrobe. First, I was obsessed with not wearing black. I wanted to always wear color somewhere. But then, about 3 weeks ago, I started to look forward to getting up & putting on a new outfit. Silly, simple mind games... but it works! I really am not a fashionista (I used to peg my jeans with rubber bands and wear shoe boots) but I have just embraced the fun of shopping and trying new colors and outfits I would never wear. Life is too short to wear black! Nurture the things that make you happy and give you a little joy.

5. I have no idea how to help myself, and no idea how to let others help me. Once I recognized this, and started to articulate it to others, I actually really started talking about what happened. As friends and family standing by someone like me, we just desperately want to do something. Just be patient. Even people like me will come around. Give us room. Let us know it's perfectly ok to say no to an invitation, or say yes and then cancel last minute. Sometimes social situations can be overwhelming. But keep asking... 3 months, 6 months, a year out. Don't forget- I'll live with my loss my whole life. It's natural for everyone to move on, but every once in awhile, remember I'm still grieving.

6. In the few weeks before Dan died, I wondered how lonely I would be and who would talk to me about Dan. I knew his family and friends, but they were his family & friends. I am so blessed to say that these people are now my family & friends. I have so much affection for the whole bunch, and they have been so wonderful. I am truly humbled by their support. I didn't doubt that my family & friends would be there, but they don't know Dan like his friends and family do. So unexpectedly, I've doubled my email contact list and there isn't a day that goes by that I don't talk to one of Dan's family or friends. My life is fuller & richer as a result.

7. I don't have to wonder what the impact of Dan's death will truly mean for me. I live it every day. My realism, type A personality has been tempered. I am now an optimist. Even when I don't want to be, I have a positive attitude. And I seem to have adopted a little of Dan's swagger. He was so at ease with who he was and carried himself the same in any situation. He left me with a little more confidence. My friend told me that I have gotten to the "I don't give a f***" place in life. This isn't entirely true... I just give a big f*** about the right things, and the rest I don't bother to entertain. It's really refreshing. And empowering.

8. I can't outsmart grief or sadness. They will come and go, and I just have to push through them. It's really easy to trick myself into thinking that I am doing things because they are what I truly want to do, as opposed to just filling time. It's ok. It's ok that sometimes, the day sucks. Or I am just really lonely. I hate those moments, but I don't ignore them anymore. We don't talk about death a lot. Why would we? But people like me need to have the freedom to say it- it's tough. It's hard. It's heartbreaking. It's lonely. It can flatten you if you're not careful. For me, the actual sickness & death was very traumatizing. There. I did it- I said all those things I hate saying.

9. It will get better. I didn't really believe it at first. But I've been able to enjoy things, laugh and have fun. I can even go to weddings and feel ok. I can go away for a few days and enjoy it. I can actually get things done at work. I couldn't do those things a few months ago. Some days, I feel remorseful that I am improving. But like I said in #7, I take a lot of great lessons and feelings with me as I go.

10. Cancer took Dan's life. But it's not going to take mine.

11. Write what you feel down. Then be BRAVE and say it out loud. I am still learning how to do this.

12. . I love you Dan. And I love my family & friends- including the Waegers and all of Dan's friends. I truly am grateful. And blessed.

Wednesday, September 2, 2009

The Furthest Point

It's hard to believe that it was been 24 weeks since Dan passed away... technically we've reached the six month point. I have a couple of observations about what I've experienced, so indulge me.

First, I really had no idea what was going to happen after March. The first two months, I wasn't working so it was really about getting through the day. I never once stayed in my bed all day and cried. It just didn't seem like a good thing to do. But I didn't really do much of anything- so I think it was pretty much a blur. Then you think it will start to get better around months 3-4. Those were actually the worst thus far. I wasn't prepared to keep going downhill. I wasn't prepared to go to work and not have any motivation. That was irritating. And it's only been about 4 weeks since I started to feel a little more normal. Really, you have no idea what it's like, and as it's been said many times- everyone's experience is different. I promise you- I will never use the phrase "I know how you feel" because none of us does.

The first 6 months- I think it's like the triathlon I just did. While waiting to enter the water for the swim, they corral you into large groups. I hadn't bothered to really look at the course, so I asked the girl next to me- "So we just swim out to the buoy and off to the left?" She laughed and said, "No, you take a right and swim waaaaaaay down and then all the way back." I was like- uh oh. I had done all my swimming in the pool, and had been swimming up to a mile. However, when you see the distance laid out in a lake... uh, yeah. Not the same. Looking back, if I knew how much distance I would have to cover in the past 6 months, would I have even had the courage to get in the water & begin the recovery?

But, I do get in the water. Convinced I was going to need to conserve all my energy, I went out all the way to the last point where I could stand and not have to tread water. I stayed in the back, not wanting to get kicked in the face (which happened later). And then- you're off. Swimming in murky waters. You can't really see where you are going and it's almost dark, with the exception of the 5 seconds your head turns to breathe. I start off swimming in one direction, and about a minute later I realize I am completely off-course. Crap- I adjust. Head back in the murky water. Just thinking- if I make it to the farthest point, that will be enough. So I kept swimming & readjusting, kinda irritated at my slow progress. I reach marker #1 and make the turn back. Now, if I can just get myself past the starting point.... this involves a huge wide turn, and probably another 2 minutes correcting myself. I went all the right, just to have to come all the way left and up in the same place I started.

Just like the last 6 months... I tried some things and for a few seconds , I was on the right course, and then I put my head back in the murky water. But I just have to keep going, because if I don't, I will literally drown- in the grief, anger, sadness, lonliness. I feel comforted, because I know that if I really need them, there are people there waiting to pull me out of the water. They won't let me drown. I may not need them because I want to finish on my own, but it's a comfort to know they are there.

Eventually I settle down during the swim, just picking out little points to get to, and just grinding it out. Then, I finally realize I might just make it out of the water without drowning. And it's pretty emotional. I try to pass a few people and eventually do. All of a sudden, I am out of the water, running to the transistion. It wasn't pretty, but I made it.

Yep, that was the first 6 months. It wasn't pretty, but I made it. And with a little bit of momentum. I am not silly enough to think the hard part is over. Now it's about truly beginning my own life, and that will be equally hard. I will move much more away from the "Dan's fiance" label to well, just me. I like being known as Dan's fiance, but I can't say that forever.

So what the next 6 months will bring- I have no idea. I am smart enough not to place any expectations on it. But I have the lessons that I will take with me... I will drink 8 glasses of water every day (this was the best advice I got, meaning take care of yourself & the small stuff). I will wear lots of bright colors because life is too short to wear black. I will keep surrounding myself with my friends and family- the number of which has doubled. I will keep doing the things that make me happy. I will keep trying to figure out how to make a difference in the cancer world. I will keep Dan in my heart every day. And I will keep writing... so stay tuned.

Monday, August 24, 2009

Swim. Bike. Run.... Iron Girl


UPDATE: How could I forget this- also congrats to Dana for racing the Iron Girl. She did great, and raised a ton of money for NCCF along the way! THANK YOU DANA!!!!

Yesterday was the Iron Girl Triathlon. I am happy to say that I finished and achieved my goal of finishing in under 2 1/2 hours! I had been kinda quiet about the event over the past couple of weeks because I hadn't been able to dedicate as much training time as I wanted. And I was unsure of whether I would succeed at crossing the finish line. I just had my last session of PT last week, so I didn't run at all the whole summer. I could tell that yesterday when I got off the bike and my mind said "Go!" and my legs said "NO!".

It was a great day, and a great weekend. I spent about 2 days straight with 2 great girls- Anne & Laura Beth- and they really made the whole thing fun and an adventure. From wrangling the bikes on the top of the car, cramming 3 people in the front seat while driving back and forth all over Maryland & DC, carbo loading, going over race prep, watching people stumble home at 5 am while we were heading to the race, photo ops, seeing each other out on the course and watching them finish... we had a blast. And we're all ready to do it again!

I did the event with Team Fight, a group that supports the Ulman Fund for young adult cancer survivors. I have written about the organization in the past, and I can't say enough good things about their work and the people, who have become good friends and been so supportive of me sicne Dan's death. I was recently asked to be on their advisory board, and I couldn't be more thrilled to be involved in this cause. Every year over 70,000 young adults are diagnosed with cancer. The Ulman Fund does a great job of advocating for young adults and helping them cope with and beyond cancer. Seeing everyone out in their Team Fight jerseys yesterday and hearing all the support on the course was a huge motivator for me.

I raced for all my friends with cancer, and for those with family members as well. Hard to believe that 3 years ago I knew only 1 or 2 friends who had been impacted by the disease. Now it's dozens. I carried their names with me on a little piece of paper in a plastic bag. I also had Dan's mass card with me. I was reminded several times along the way of all the lessons I've learned from each. We all deal with cancer differently, but once it's touched you, you have such a respect and empathy for others who have gone through similar things.

The swim was ok. It was a little intimidating out there in the middle of 100 other women. Plus, I almost fainted when I realized that the bouy I thought was the turnaround point was just the first bouy. Aside from swimming massively off-course and getting my goggles kicked off by another swimmer, I had a good time. It felt pretty cool to get out of the water and run into the transition area. The bike was pretty fun as well. No problems there. The run was pretty tough. The 3.4 mile course seemed to be 80% up hill. Since I hadn't run but once the entire summer, I knew it wasn't going to be pretty. And even though I was sucking wind during the run, and was so much slower than I wanted, it was just important to keep moving and not quit. Once I hit the 2 mile marker, I was relieved. Of course there was a nice big hill to get up before the finish, but I made it. And it feels pretty cool to hear them announce your name!

But the biggest reason I did the race was for me. Yes, my training wasn't up to my normal standards. But it gave me something to focus on for me... not Dan's memory or Dan's foundation. I could truly escape into the gym or the pool all summer. There, I was just me, not someone who had experienced an a terrible loss or the girl whose fiance died from cancer. This experince- the lack of training & the injury- taught me that I can will myself to do anything. I may not be fast, but I will not quit and am not easily discouraged. I am willfully determined. I guess there is something about a triathlon that makes you feel a little bad a** (sorry for the language, but no other word would do). Go ahead world... bring it!

Here are some pictures. I was so lucky my mom came and was my photographer. And somehow she managed to spot me at each transition and right at the finish line. She gave me a great little boost every time. I have a great mom- the best!






Saturday, August 15, 2009

Juggling Act

It's been a pretty exhausting few weeks. For lack of better planning, a couple of big events have hit all at the same time. First, we've been working on the scholarship program. And at the same time, trying to spread the word about the Waeger Cup in October. Add onto that a few work trips and trying to handle all of summer activities... yikes!

Since it's the first year that anyone but Dan has been in charge, I have been trying to figure everything out and make sure it goes off without a hitch. I knew a lot about NCCF, but Dan was always very adament about doing things himself because he never wanted to put anything off on me. Our scholarship applications doubled this year. I was so proud that we got a good response because it reminds me that we have a lot of work to do to help these young adult survivors who want to go to school. The need that Dan saw still exists. Of course now I want to raise more money so that we can make a bigger impact!!!! While there is a huge need for research and legislation, the beauty of NCCF is that we give out direct financial support. We know exactly who benefits from our fundraising. We know their names and stories, and can be inspired by their accomplishments. And there are so few organizations that do what we do.

We've just sent out the brochure for the Waeger Cup. I have been a little nervous because Dan wasn't the most organized person so I don't have a great distribution list. And because many people might not give without his name on an email or letter. Dan's story was so powerful. And now we need to tell his story, but also our own with respect to losing a friend, brother or son. I hope people will see that by connecting their story to Dan's, we can grow NCCF. I think we're starting to, but it's tough without Dan guiding us. But whenever I get discouraged, I think about the fact that Dan knew nothing about cancer or being a philanthropist when he was diagnosed. So we can figure it out, too. But it makes me nervous nonetheless. I am also not the best fundraiser. It is not in my nature to ask for help on anything. But, I also know that the biggest reason that people don't give is because they aren't asked!

So I've been running at full capacity. And am nowhere close to where I need to be, which is scary. Because Dan was the one who facilitated all of this last year. And he was on harsh chemo drugs and still trying to work full-time. I wonder how he did it. He just had a quiet drive. He could've asked for help or even scaled back. He could have gone on disability. That was never an option. I used to give him a hard time about not being organized enough. Right now, I wish I could just say how amazing he was. I still feel like I can't keep up with him! When I last wrote that people forgot how sick he was, it was because of what he was able to manage. And he was selfless at a time when most would need help themselves. I just hope if a few of us make just 1/10 the effort he did, we can carry the scholarship program and the golf tournament off.

For more info on the golf tournament, please visit here

PS- Just a sobering thought- I have been trying to clean out the house a little bit as NCCF has taken over. I generally haven't moved too many of Dan's things but I did decide to clean out a few things. I threw out about 30 bags of cough drops.... 30 bags that were stashed in various places. I don't miss that cough. How did he did he deal with it?

Saturday, August 8, 2009

Man's Best Friend

I went on my first trip this week for work since Dan passed away. It was fine, other than my complete inability to focus in 3 hour meetings :) As usual, I picked up a book to read in the airport. It looked harmless enough... there was a dog on the cover, and it seemed like a light-hearted story about a dog, Enzo, & his family, told from the dog's point of view.

Well, wouldn't you know... about 20 pages into the book, the dog "smells" something weird whenever he is around his human mom, Eve. Turns out, she gets brain cancer and dies. Despite the "are you kidding me????" reaction, I finished the book. The remainder of the story for the dad, Denny, is much worse than anything I will ever go through (hopefully). But in the end, he triumphs.

Anyways, there was a line in the book that I thought was pretty spot on. When Eve passes away, Enzo writes "Eve's death was the end of her difficult battle. And it was the beginning of Denny's." Simple, but so true. The cancer battle doesn't end when someone's life does. There are many people, just like the people that still come to this blog, that are battling the emotional and mental scars left by the disease after their friend or loved one is gone. I think we forget about that sometimes because it's normal to be relieved when someone's death brings an end to physical suffering. We can be too quick to think that cancer has left our lives for good. As if death was a good solution. But it hits us- months & years later. However, although we love to celebrate cancer survivors, we don't really know what to do with those left behind who are still dealing with cancer.

I am continually surprised that every single cancer survivor who talks about their relationships during cancer say that it is harder on the partner or loved ones than it is on the one going through treatment. Dan thought so... he was the first to admit that he could talk to anyone with a personal diagnosis, but had no idea what to say or do for someone in my shoes. When you're the person next to the person that is sick, you don't really focus on anything in your own life, other than how the decisions you make might help or hurt an already difficult situtation. Of course the easy thing would be to say that all the attention is on the person who is ill, and the partner is just left to hold work, home, family & friends together all while living in fear that the person they love the most will be in pain or worse, leave them. But the thing I always struggled with the most is that I didn't know how Dan felt, in his life as a cancer survivor and as he neared the end of his life, someone facing death. There were things I couldn't possibly understand no matter how much I tried. There was no solution for that.

I never minded being in Dan's shadow. But aside from his cancer, Dan's personality was so magnetic and energizing, that it was also easy to be over-shadowed by him in everyday life. But I didn't mind that either. Because he had many qualities that I admired and could learn from... which is pretty rare in life. So when he died, it definitely marked the beginning of this battle for me. The battle to maintain my sanity and to make sense of what happened. The battle on his behalf to be part of the solution for many of the problems with cancer. And the battle to figure out who I am. Because if I know anything, it's not who I was.

So back to the work trip... prior to going away, we had to take one of those touchy-feely personal strength tests. I've taken them many times before, and I usually get the "analytical/intelligent/competitive" traits. So when I got the results this time, I was really surprised.

My #1 strength... positivity. My #2 strength... belief.

We were joking at the meeting that I should have become a social worker. My boss asked why I spent so much money on business school. I laughed, but it's pretty significant to me. On the one hand, I was pleased to see that after all this, my greatest strengths reflect those things in Dan that I admired. I didn't feel quite so screwed up. But on the other, uhhhhh..... maybe I am in the wrong line of work. And maybe I have a long battle to figure out what that is in a way that I can take care of myself financially and still want to go into work everyday.

It is a battle. Sometimes to the outside world, Dan's battle wasn't as evident because for a long time, he didn't look sick. He still went to school, worked full time, ran a foundation, golfed, dated, got engaged... but it was a battle for him. Shortly before he died, he said that people didn't realized that even with everything he was able to do, he didn't feel right for the last (almost) 4 years. He was sick, and he felt sometimes people forgot it. As with me, I've done pretty well. I've gone back to work, picked up Dan's foundation, gone back into life... but's it's still a battle. The tools I've always used to cope with life aren't the same, and maybe some don't exist. But it's also a battle armed with new strengths and a guardian angel.

Monday, July 27, 2009

Maillot Jaune

I am sure that many of you were paying attention to the Tour de France these past few weeks. And probably hoping (maybe expecting) that Lance would pull it off. I know I was! First off, I have a huge amount of respect for the event. Having been known to ride 112 miles in a day myself, I can't imagine doing that for almost 3 weeks, at a sprint & up mountains so steep that they can't be properly graded.

And of course, it's hard not to respect what Lance has offered to those of us dealing with cancer. Yes, it's not about the bike, it's about the yellow bracelet. The unity. The support. The belief in the word "survivorship" & in being connected to a community. You have pride in wearing yellow.

I have to admit, I wasn't sure how this year's Tour would play out, and whether I'd be disappointed if Lance didn't win. After all, we can count numerous failed comebacks. One where our heroes leave as gods at the top, only to come back as mere mortals.... Jordan, Favre... & for you ladies, Beverly Hills 90210. We almost cringe while we watch, wishing they'd left us at the height of their glory days.

Lance is different, of course, because he is no longer just an athlete with another flavor-of-the month cause. For many, he embodies what cancer survivorship is about. But for most of of the world, he is just a cycling champion, and anything but a victory would have been a failed attempt at resuscitating his career. Victory was expected for the vast majority of the non-cycling world. Then Lance fell and broke his collarbone. He was lying in a ditch somewhere in Spain in May, and probably could imagined a few other things he might want to do this summer than get a bunch of pins in his shoulder and keep training. Sprinting. Up Mountains. Against the weight of his cycling legacy.

Of course, no one person perfectly represents cancer or cancer survivors. I am sure some don't drink the Lance Kool Aid... they don't like or understand his politics, or would choose a different way to allocate the resources he has raised. He doesn't resonate with everyone. But he resonates with me. Because I can imagine what it's like to crash and be tossed in a ditch, and have your plans interrupted with something you have very little control over. And then, have to climb a mountain every day. In the past, you used to breeze up those mountains... it was your strength. You dug in and steadily made your way. Almost effortlessly. And now... you've been slowed & others are passing you by. You can see the strain on your face. You have a new role... you may not even be the best on your own team. Maybe you even have some doubts. Your weaknesses have been exposed, and you have to adapt to a new reality.

But you still have your moments. When you're as good as you once were... as good once as you've ever been (thanks Toby Keith). You sail up the mountain at blazing speed, unencumbered & fearless. The old you is back. But you also take the time to look around & interact with your fellow riders. You share the experience, and don't try to merely punish with a victory. You want the world to ride with you... to engage in the conversation. You become part of the team. You become more human... more relatable. You don't even have to be a cancer survivor (or co-pilot, like me) to understand what it's like when the game changes. You adapt or you fold.

So, yes, I wanted Lance to win. But I still get it. And I am thankful for the light he shines on cancer. I know Dan was greatly inspired by him. Through the Lance Armstrong Foundation, Dan was able to connect to others and participate in creating progress against horrid disease. LAF was such an integral part of his journey, and ultimately ours at the end of his life. From the tweets, to the video cards, to the emails... we felt very supported. If it weren't for LAF or NCCS, Dan's work, (which goes without saying)... I don't even want to know how we would've done it. We felt lucky to have them all on our team. I still do.

Maybe being human isn't so bad. After all, we all find ourselves in a ditch some days. But all that matters is that we pull ourselves out & up, and get back on the road. And wear a nice bright color to brighten our days.

PS-I have the LAF manifesto on my wall. It was sent to us, signed by the entire staff, during the last few weeks of Dan's life. For those that knew Dan & how he approached the disease, it should resonate with you as well.

http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661055/k.E8CE/Manifesto.htm

Friday, July 17, 2009

First Birthday

It has been a pretty tough couple of weeks. I suppose that I am thinking back to last year at this time when we'd found out that Dan's cancer has metastasized to his liver. It is hard to believe that this blog just celebrated it's one year anniversary. More than everything else, the blog has been a big part of dealing with what has happened for both Dan & I. Sure we wanted to keep people informed and maybe educate a few folks along the way. But the blog was always a place to go to share our thoughts & hopes. Very rarely did we share fears and sadness, because we had each other to lean on. We always wanted people to know that even with cancer and an uncertain future, we were still positive and still happy people.

This period has been unexpectedly rough. I think you feel like you should feel better every day. And some days you feel worse than before. I am reminded of Sisyphus, the character in mythology who was destined to roll a boulder all the way up a hill, just to have it roll back and have to start all over again. Don't take that to mean that I being negative. I just want to get the bolder over the hill... not to move on, but to stop being happy & sad all at the same time. I didn't even think that was possible. But of course, should give me hope that after all I've seen and what I've lost, I am happy. I really think that it's the mark Dan left on my life- the gift of happiness despite the odds & circumstances.

I spend a lot of time "doing"- yes, I keep myself pretty busy. But when you're always "doing" you don't take the time to "un-do"... and by that, "un-do" the sad thoughts. Because you just keep moving. I am not one to usually admit when I am sad or when something is bothering me. Dan & I are alike in that way. When he was getting treatment or having a really tough day, he would just retreat into his thoughts to focus on getting through, focus on being positive. That could be hard on me sometimes because I wanted to always hear what he was thinking... he was the one that always made me feel better. I could always talk to him. One of the best things about being with Dan was that he just let me talk or get things out. He never judged and always acknowledged what I had to say. As he'd say "get it out- you'll feel better. And I'll buy you an ice cream."

So, if I could talk to Dan, here is some of things I'd say that have been really hard lately...

1. I can't believe I will never say to our son or daughter "You look just like your Dad".
2. I really used to like watching you at the driving range. I always stunk and would let you hit more balls. It was great to watch you do something you loved and were good at... even if I was bad!
3. Guapo's just isn't the same without you. Neither is Rita's or Carmen's... I've swtiched my usual to your favorite- cherry.
4. Not hearing you say "Babe, whatcha doing? Where've ya been?"
5. Working on scholarships for NCCF and realizing how much of an effort it is. And to think back to you being so sick with chemo and insisting on scanning all of them yourself & getting them out. I have a whole new level of respect.
6. Getting to be a part of the work you did in the cancer community, and knowing that you'd be happy I was meeting people & connecting with others & trying to find my own way. Bittersweet.
7. Having people ask why I wear two bracelets, and have them look at me in horror/sadness when I say "my fiance passed away from cancer". It's impossible to do your story justice in a 2 minute conversation.
8. Realizing that by the end of the week, every pair of shoes I own, along with my bags, are right at the door when I walk in creating a hazard. It was the only thing that got under your skin.

So I'll see if sharing this makes me feel a little bit better. Dan always said you need a team on board to deal with cancer. And I still need that team, and thankfully, have this blog to connect with them. Sometimes I do feel like I am letting him down when I am not 100% positive. But he wasn't perfect, and I know he had his moments of doubt, too. And he always wanted to give people a realistic view of living with cancer. And I guess maybe I can do that living after cancer.

Wednesday, July 8, 2009

Pretty Cool

I forgot to mention...

Nike & LAF/Livestrong are doing something really cool for the Tour de France. You can send an email message or text message with a tagline that will be spray painted on the road during the tour. They will even send you an image of it and let you know when & where the message was placed.

You can learn more about it here- it's called Chalbot

http://www.nike.com/nikeos/p/livestrong/en_US/chalk_messages

Click on the left where it says chalk messages & you can enter your own.

I bet you can guess what I wrote!

Tuesday, July 7, 2009

Man in the Mirror

Don't worry- this isn't the Michael Jackson tribute post! But since they've been playing his music everywhere, I've been hearing this song over and over. (For the record- my favorite MJ song is "PYT" and favorite J5 song is "Blame it on the Boogie"). I feel like Dan would've written a blog about "Man in the Mirror" (maybe he even did, and I am losing it).

I just got home from a meeting at the Ulman Fund. I was asked to be on an advisory board to help evaluate programs and events from the young adult perspective. For those that don't know, the Ulman Fund is a great organization that serves the young adult cancer community. Lucky for me, they are also right in my back yard! It was started by Doug Ulman (now the President of the Lance Armstrong Foundation) and his family after he was diagnosed as a student at Brown back in 1997. I am always amazed at the power of a single person (or families) drive & determination. It just goes to show that you don't have to be a celebrity to bring about real change in the world.

But I digress. As I drove home, "Man in the Mirror" came on the radio. I want completely cheese out and write about the lyrics. But why is that the perfect song always comes on! Here I was, leaving a meeting where people are taking their personal experiences and using them to bring about change.

You all know I have no idea what direction my life will take. I have been thinking about something a lot, though. And it has to do with death, so don't be alarmed. I've been thinking about how much of an honor it was to be with Dan the last few days of his life... to care for him, and to be by his side at the end. Most people have their whole lives to get the toughness and the empathy to deal with that type of situation. Not to pump myself up- trust me, I doubted whether I could do it, and there were times when I wanted out. But even in the moments of doubt, I knew there was nothing I wouldn't have done for Dan and the trust he placed in me, I've been wondering how anything else can measure up against that experience... did I already do the most important thing in my life- help someone else at the end of his? What else can possibly compare to this?

Then MJ comes on singing about being the change you want to see in the world. And I think maybe there are more people to be helped, more important life moments. And not in the end-of-life, dramatic sort of way. But in using this new-found insight to connect with people who are going through any sort of tragedy. At our cores, none of us wants to be alone. And cancer is a lonely world at times. Grieving is intensely lonely. So maybe it's not about how much money I raise, or finding a job in the cancer world for me. Maybe it will just be using my story to step up for others and make sure that if nothing else, they don't feel alone.

I hope that I am onto something. I'd hate to waste a good MJ singalong.

Wednesday, July 1, 2009

Tears of a Clown

Up until this week, I've really been enjoying the swim piece of my training. Five weeks ago, I could barely do a lap, and last week I was up to 22. However, it seems like this week everything hurts. My lower back, my nagging foot issues, my calves. I was chalking it up to the normal training lull... until I hit the pool this week.

The past 3 days, I've had a lot of trouble with my endurance and breathing. When you're in the water and out of breath, you can get a little panicky (even if the pool is only 4 ft deep!). Today was my long swim- 25 laps ( a little over the distance for my event .6miles- trying to get up to a mile). And from the moment I hit the pool I felt like a rock with arms. But I kept on, slowly and trying to adjust my breathing patterns to get a little more air.

At one point I become very mentally frustrated. My thought was- how can I go faster if I can barely float?!?! Another lap went by, and I was increasingly irritated. You see, this training is my best attempt to put some order into my life, and have something to focus on... a purpose. After hearing this week from my physical therapist that I may need another 3 weeks before I can even run, I was already worried that I may not be able to participate. But I had been consoling myself with the thought that I could really work on my swimming and get decent enough that the run, not the swim, would be the challenge.

So as my mind started to wonder, I was worrying about what would happen if I couldn't finish the triathlon or even participate... because what if I sink in the swim! How can I go faster if I am just struggling from the get-go?

After another lap, I made the obvious parallel to the grieving process- how can I move on if I can still barely get up? The three-month mark has come and gone, and I find that this time is more difficult than the immediate aftermath of Dan's death. It's more quiet, life has returned to normal. Or at least that is what it looks like on the outside. More days than most, I keep thinking of the lyrics from "Tears of a Clown"... "If there's a smile on my face, it's only there trying to fool the public."

I've really been putting my best foot forward, keeping so busy that I am only home long enough to sleep most days. I tricked myself into thinking that I could be an A+ griever, flying through it like a champ. And while most days I do, I've been noticing lately that just doing the basics (work, gym, etc) is exhausting. I can go to work, but I am a mental space cadet. My absentmindedness is awful (and I've always had a knack for losing things)- I've lost my car keys (still missing), locked myself out 2-3 times, lost my credit card, lost my driver's license, forgot my car when I thought I'd walked somewhere, broken my phone... I know that these are all normal things that people go through, but it still sucks. Yes, it sucks. This is "suck" period. Yes, I said it, and I am not feeling sorry for myself, but it doesn't change the fact that it sucks.

I've been so focused on trying to figure out Meg 2.o and what shape my life will take that I have not allowed myself the time to just get up and get through the day and be ok with it. I am ok with this "suck" phase, bc it has to happen. But I want to go faster in everything, and it's just not realistic.

So I did finish the 25 laps today. It sucked, but I got through it. Just more slowly and with a bit more of a struggle than I wanted. Ain't that life.

Thursday, June 25, 2009

Wearing of the Green

There have been a couple requests for the meaning behind Waeger Will Win and the green bracelets. I had to do a little research, so if I don't get it exactly right, it's close enough!

So, with a little help from Serge & Joe...

"Waeger Will Win is pretty much a phrase coined by Dan since the time we met him. Whether it be on the golf course, fantasy sports, or his intramural team - that would pretty much be Dan's team name. Or his trashing talking on the first tee. I think I've told you to me he really seemed to like the name Waeger and was proud to refer to himself as such.

The most prominent WWW team name is probably the intramural floor team. It was our floor hockey team (Joe was on the rival team) and we got it together just after Dan tore his ACL. Because of this Dan decided tobe the goalie, thinking that would be fine. After letting up a couple goals and having a ball SLOWLY, and I mean SLOWLY, roll between his legs he quit (we kicked him out) and became coach of the team. He would show up in suits for the games. His team that year was named, like all others, Waeger Will Win. Pretty sure that is the only coaching advice he gave too....

After Dan was diagnosed, a girl named Julie wanted to do something for Dan. She called asking for ideas ofwhat to put on a t-shirt or wrist band. I think we went with Waeger Will Win because it was in Dan's IM profile and everyone started putting it int heir profiles after he was diagnosed. Just grew from there.

The 237 Lodestone crew (Tyler Wright, Stoney, Becky, Serge, and I, and the usual random people sleeping on the couch...Lowy, Marshall, Galligan) all had the bands right off the bat. We brought the first batch of wrist bands to Dan's first Birthday Bash. His fam loved them and ordered more. They gave me a bunch more during a visit to see Dan at Hopkins. Seemed like half of Westminster had them from there. Pretty cool how the bands transitioned from a way a small group of friends could show support for their buddy to ideas on living your life to the fullest, showing support to those withcancer everywhere, making the best out of every situation, and, of course, agreat way to remember and show tribute to Dan...."

For me, the green band played a very important part in the day Dan & I got engaged. Within a few months of meeting Dan, I started wearing my Livestrong bracelet again. He offered me a green WWW bracelet, but I didn't want one. I didn't feel like I was one of Dan's inner circle, and after seeing how close his friends were, I didn't want to wear one just because I had a little crush on the kid. It became a sort of running joke between the two of us, but he never offered me another bracelet during all that time.

Fast forward to engagement day when Dan sent me on a journey around the various places that were important to us (yes, that meant I went to a bar AND a church in the same day!). At one point, I received a little box and a note. In the box was a green Waeger Will Win bracelet. The note read

"Meg-

I'd be honored to have you wear the wristband. Wearing the band does not remind me of cancer or a winning attitude, but of friendship. Friends like Joe & Serge and all those who have supported me over the years. To me the green band signifies an unbreakable bond between friends, and I'd love it if my best friend would wear one forever...."

Now, I am struck by how good it makes me feel to see people still wearing the bands. I know that I am always among friends.

Friday, June 19, 2009

Happy Birthday













Dear Dan-

Happy Birthday!

I miss you every day, but am so thankful for all the wonderful memories you left me. We crammed a lot of happiness into such a short time. As you said, "We had a good run."

Thank you so much for loving me and making me a better person. You showed me what it was to be joyful, and even in my grief, that joy remains in my heart. Even though you're gone, I still learn from you and still laugh when I think of all the many jokes and adventures we shared. I know that when you said you'd never really leave me that you meant it. Because you left me with a true happiness with myself and with life. A gift that will always remain.

I love you. I miss you. And I hope you'll be proud of who I've become as a result of loving you.

Happy Birthday babe.

Tuesday, June 16, 2009

Another Year Older

So Friday is Dan's birthday. I've been very careful not to make certain days big "anniversaries" of events. For me, it would just make this whole experience a lot harder. It's bad enough getting through normal days. I wonder if people at work have any idea what it takes for me to get up and look presentable, commute to work, sit at a desk for 8+ hours... let alone actually be productive and intelligent!

But Dan's birthday will be the first significant day for me since he passed. We loved planning fun things and surprising one another. And we always wrote a letter to mark these events. I would have spent a long time picking out the perfect card. He would've cried when he read it.

Dan's birthday last year was one of the last fun days we had before we knew his cancer spread... when life was just beginning for us, and we were excited about our future. We played hooky and went to Six Flags for the afternoon. He had no idea, of course. And it took a lot of effort to smuggle towels & a change of clothes for the water park! I'll always remember that we stayed until the park closed, still running up the lines for the water slides. We were easily the oldest ones there by many years. I think we may have elbowed a few abnoxious teens out of the way. It was such a fun day. I miss planning fun things for him. Well, I just miss him. I miss everything about him.

So if you have a good story to share, feel free to post it in the comments. It would be nice to hear. I don't know what I'll be doing on Friday. I need to find something fitting. Something fun and goofy. I better get moving!

Friday, June 12, 2009

Another Loss

A couple of years ago, Golf Digest ran a contest that allowed one lucky winner to play at the US Open with a celebrity foursome that included Justin Timberlake and Matt Lauer. That winner was John Atkinson, and he was a lung cancer survivor. You can't imagine how jealous Dan was, and kicked himself at the missed opportunity. When he found out that this year's "essay" had a 10 word limit, Dan was even going to enter with one tagline "John Atkinson has Nothing on Me".

John and Dan became friends, often golf stories or information on side effects when one of them started a new treatment. And mostly just to check in and keep up the positive attitude. I distinctly remember John calling last year on Christmas Eve day. Dan wasn't taking any calls, which if you know how much Dan loved Christmas... that should tell you something. But Dan eagerly took John's call and it gave him a huge boost. Enough that he could enjoy decorating the tree and wrapping presents. Dan also spoke to John just after we'd learn that he was near then end. Dan was nothing but encouraging, but unable to tell his friend the real story. Dan didn't want to let him down.

John passed away yesterday. Most of the fellow lung cancer survivors that helped Dan have passed. It doesn't get any easier. Best wishes to John's wife Lori & their children. And thanks to John for sharing his survivorship story in the national media, giving lung cancer a new face & attitude.

Here is the coverage this morning on the Today show:

http://today.msnbc.msn.com/id/26184891#31305306

Thursday, June 11, 2009

Starting Off on the Wrong Foot

So a couple of weeks ago I started my training for a little triathlon in late August. Being the type-A, overachiever that I am, I decided that the program wasn't tough enough, and that I was going to run more than suggested because I hate running & really wanted to do well. Ok, really I just didn't want to make a fool of myself. Well, I overdid it & re-aggravated an injury that I've had on & off for five years. It's nothing bad, but basically I have a lot of pain just walking. And can't wear cute shoes or flip flops.

First off, I was super irritated because exercise is one of the few activities that I can do on my own that I like and doesn't make me feel lonely. The other is shopping, and I had to cut myself off for awhile! That, and I kinda dig the Speedo/goggles/swim cap look for me- it's like a fun costume :) I like to think that Michael Phelps has nothing on me!

I was also very determined to finally do this triathlon which I've had on my to-do list for a long time. I had signed up for the event last year, and Dan made me my own training manual for my birthday with lots of inspirational quotes, etc. However, I dislocated my finger in May and couldn't grasp the bike handles or swim. And then Dan's cancer spread. So, since Dan died I have been really insistent on getting this event done, because I don't like to think that cancer prevented me from completing something.

In light of the sharp, hot-poker-like pain I had, I promptly stopped running, and added more swimming & cycling. And I made a trip to the podiatrist, got my self lined up with orthodics (sigh). And asked that the doctor set me up with physical therapy. Turns out that my problems are caused by overly (and apparently "freakishly") flexible feet. Go figure.

As I was in PT this morning stretching and getting sonograms on my feet, and then getting zapped with some pulsating machine, it dawned on me that I am definitely a little Dan-ish these days. Last year, I made excuses why I couldn't possible train for the triathlon, and just dropped it. And in the past, I just quit exercising when the injury reared its head. I may have seen a doctor, but certainly wouldn't have told her what I needed to happen, and then convince them to throw more therapy at me. This time around, stopping is not an option. And I know that this little physical annoyance isn't much, but it's kinda rare in life when we have an "aha" moment of how much we've grown and really learned something.... when we can pinpoint it.

So as I was getting my footsies zapped, I felt a little wiser today... a little more empowered. And certainly determined to get this done. Baby steps- literally!

I also thinks it appropriate that I was wearing green, which I don't often do.

Tuesday, June 9, 2009

Must See TV

Update: Here is the link! Well done! http://today.msnbc.msn.com/id/26184891/vp/31204063#31204063

I just wanted to give a little plug to a series that the Today show is running this week called Confronting Cancer.

Tomorrow (Wed. June 10) there will be a very special guest from NCCS- "Boss Lady" will be featured on a segment covering living with cancer. As someone whose life has been impacted by Ellen's survivorship lessons, I can't think of anyone better to represent the topic. Plus I hear that NCCS will be featured as well, which will hopefully bring great attention to an organization focusing on survivorship. A big hug to all the NCCS family!

The segment will run between 8-9 am tomorrow. Please tune in and give your support! I will post the link after it airs.

Here is a link to earlier features of Confronting Cancer

http://today.msnbc.msn.com/id/26184891/vp/31166521#31166521