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.