Wednesday, November 24, 2010

I Prefer the Roller Coaster

Giving Thanks

First off- there is a fantastic article about a young woman whose story reminded me very much of Dan. Her name was Jill Costello. She was diagnosed with stage IV lung cancer. Like Dan, she was a non-smoker, a college athlete at Berkley- she was on the crew team. She lost her battle after a brief but courageous fight, and has done so much to raise awareness for lung cancer. Jill lived every minute of her short life, and her friends and family are keeping on in her memory.

http://sportsillustrated.cnn.com/vault/article/magazine/MAG1178822/1/index.htm

And second, since so many days go where I don't stop and take a moment to reflect on all the great things I have been blessed with, these are the things I am thankful order (in no particular order)

  1. The Tastee Diner- I used to go here almost every morning when I wasn't working after Dan died. It was part of my routine. I've recently started going again before work or days when I work from home. The people there are so nice- salt of the earth kind of people. They know my order and always refill my coffee before I have to ask. It's just a comforting place to go, and I never get tired of going there, even if I eat the same thing every time!
  2. Christmas music- ok, even if it's silly that the radio stations started paying Christmas carols on a continuous loop the week before Thanksgiving, how can you NOT like it? Christmas carols always make me happy. They remind me of going to Catholic school as a kid, and singing in the Christmas pageants. And make me look forward to Christmas Day, when my dad pulls out the song sheets and we all still sing together. On a gloomy day, no matter what time of year, Christmas music always does the trick.
  3. My freedom- and I'm thankful I've never been the one who has to risk my life for it, though I appreciate the men and women that selflessly do.
  4. A good pair of comfy socks in the winter and flip flops in the summer.
  5. My parents who just celebrated 40 years of marriage. They may not be the most demonstrative when it comes to showing affection, but they are always there for the people in their lives. Moreso than any other two people I've ever seen in my life.
  6. My family, which includes both mine by blood and those by the strings of my heart- the Waegers, my "cancer" family, my friends from school... too many to name.
  7. My charming and precocious nieces... for the silly little things, like leaving notes on my refrigerator and their contagious laughter.
  8. My health. My health. My health. And health insurance- so many people are dealing with little ailments and big diseases. To be able to get up every day and do the things I want to do physically- I will never take it for granted. And for the times, I've needed it- the access to doctors and insurance that pays for it. Should be a right, and not a privilege.
  9. The mere fact I've made it through one of the worst losses a person could go through.... however I maintained my head and could have hope for the future- I will never get over the loss and the pain it leaves behind- but the fact that now know the capacity of the human heart to love & heal- I wouldn't give that knowledge up.
  10. Red velvet cupcakes with cream cheese frosting (also my niece's favorite)
  11. Dunkin Donuts coffee
  12. Mani/pedis... best $30 you can spend on yourself and come out feeling like a new girl.
  13. Mashed potatoes
  14. Having someone in my life that loves me and wants the best for me. Who accepts me for who I am today... no matter what. Who supports me and makes me laugh and keeps me happy. And who keeps a level head when I don't.
  15. DVRs- who knew one invention could make life so much easier
  16. Getting paid every two weeks
  17. For my everyday heroes... the ones who spend their days personally or professionally battling cancer. It's the hardest job one can have. For those whose job it is to help those with cancer- the doctors, nurses and non-profit professionals... I don't know how they do it, but their contributions to the quality of other's lives are amazing. For those living with the disease- no one can truly understand the level of mental and physical strength it requires. For the caregivers- to maintain your sanity and stay positive is a true gift.
  18. Going to sleep every night and getting up every morning. I may not like getting older, but I'm lucky I am.
  19. My guardian angel who will always be young, happy and smiling in my memories. Gone but never forgotten and always missed.
Hope you all have a wonderful holiday, and remember to be thankful for the big AND the small things!

Wednesday, October 27, 2010

A Long Way to Go

November is Lung Cancer Awareness month, and next Sunday Nov. 7th, I will be attending the second annual Breathe Deep DC (BDDC) 5k walk for the Lungevity Foundation. If you'd like more info, please visit

http://events.lungevity.org/site/TR/2010TeamRaiser/General?px=1448282&pg=personal&fr_id=2641

I've helped out the last two years with the event, and have been amazed at what a small group of people have done to raise awareness about our #1 cancer killer. The walk was started by my friend Jerry Sorkin, who is currently battling lung cancer. This is actually his second go-round with cancer, having beaten it back as a college student many years ago. He is married with two great kids and an awesome wife. Anyways, the walk came about last year when Jerry wanted to find an event to attend during Lung Cancer Awareness month in the DC area. And he was stunned to find that NONE existed. NONE. And this is a disease that kills more people that breast, prostrate & colon cancer COMBINED. So Jerry got together a few people, put them to the task of conducting a wall on the National Mall.... people who weren't fundraisers or working for a non-profit, just a group of people who wanted to make a difference for Jerry and everyone dealing with lung cancer.

Below is what I wrote when asked to say a few words about why I am involved in the event (few words- hah!)

I was engaged to Dan Waeger, whom we lost to stage IV lung cancer at the age of 26 in March 2009. At the time he was diagnosed, Dan was just 22 years old. He was pursuing a Master's degree at Wagner College where he was also the assistant golf coach. The diagnosis came as a total shock. Not only was he just 22, but he was a lifelong athlete. He was a non-smoker from a family of non-smokers and with no known risk factors.

Dan took his diagnosis in stride. He commuted from New York to Baltimore to receive chemo, and maintained his full-time student status. Not an easy feat. It was his experiences as a young adult dealing with cancer who did not want to put his education on hold that led him to found the National Collegiate Cancer Foundation (NCCF). When friends and family wanted to raise money for him, he instead gave it away to young adults who did not have the "team" he did- friends, family, health insurance, etc.

Dan lived with his stage IV diagnosis for almost four years. During that time, he made cancer advocacy his life's passion. Foregoing a career on Wall Street, he instead took a job in development at the National Coalition for Cancer Survivorship, the nation's oldest survivor-focused organization. He also advocated passionately for lung cancer research and awareness, trying to dispel the stigma associated with the disease. He hoped that by sharing his story and "winning" attitude, he could impact change.... on a policy level, but more importantly, on a personal level with those who were not educated on the truth about lung cancer.

But the greatest thing about Dan was that despite his cancer diagnosis, he was the most normal person to be around. He would have chemo on a Friday, and return to work full-time on Tuesday. He traveled, golfed, had beers with his buddies, spoiled his nieces & nephews... and fell in love and proposed to me! (Perhaps his wisest choice!). We were engaged in March 2008, and true to form, set out to plan our wedding a year later. Many people ask why we didn't get married right away... well, we wanted to have everything that normal people have when they get engaged... a year-long engagement, parties and a grand wedding. Unfortunately, about 3 months after we got engaged, the cancer spread to his liver. It was devastating news, but together we spent the next 9 months together fighting for his life.

Despite his harsh treatments, he never gave up working or traveling to raise awareness. In fact, one of the last speeches he gave was to Eli Lily in which he issued a call to action to the company President to adopt lung cancer- an orphaned cancer. He stood up there, knowing he did not have long to live, to thank the researchers for developing Alimta, a drug that gave him 3 years of a great life. Until the end, he wanted to fight and spread his message... "Life is 10% what happens to you, and 90% how you react to it". Together, we blogged about our life and living with cancer. That blog was visited by over 15,000 people around the world.

He died in March 2009, and there has not been a day that goes that I don't miss him, am not proud of him and am not motivated to raise awareness for lung cancer. Since he died- I've tried to live the way he taught me. I've picked up NCCF and we are building that for a great future to help young adults. We've raised over $120,000 for our scholarship program. And I've become involved in lung cancer advocacy. Which is how I met Jerry Sorkin. We were both advocating on the Hill for another organization (the Lung Cancer Alliance). We happened to sit next to each other on a bus ride. I remember thinking- "This guy must have lost a parent"... so I was shocked- yes me!- when he told me he has lung cancer. And we become friends. So of course I wanted to help with BDDC in any way possible.

I guess the angle that most people take with BDDC is around raising awareness and research dollars. But what people don't understand- unless they've dealt with lung cancer- is the complete isolation of the disease, especially for those who have lost someone. People ask why they don't hear about lung cancer if it's our #1 cancer killer. Well, very few people survive the disease. And those that do make it beyond the first year... no one tells you what it means to live with the disease. There are few survivors to hold walks and events... only devastated families who lose their loved ones swiftly and painfully, and are left to wonder what happened. Why isn't there pride associated with living with lung cancer? Because people think those diagnosed have brought it on themselves through smoking. Why can't we detect it earlier? Because there are not adequate tests. Why is it so tough to treat? Because your best option is to catch it early and cut out part of a lung.

BDDC is the first event of its kind here in DC. Yes- we are raising money for research. But just as importantly, we are allowing those affected by the disease to come together... to grieve, to celebrate, to acknowledge our fight and anger that this disease has been ignored for too long. I KNOW that one day we will fill the Mall with survivors and family & friends just like the breast cancer walks do. And this is not a knock on breast cancer at all. Rather, the progress they've made with that disease is a great benchmark for us in the lung cancer fight.

So, I am involved with BDDC because of Dan Waeger. My love who challenged me to be positive, to be proactive, to be accountable and to make a meaningful difference in the world. And I don't know anyone else who holds those qualities more than Jerry and our team at BDDC.

Wednesday, October 20, 2010

We Keep Winning

To all who helped with Waeger Cup VI....THANK YOU!!!! We raised close to $15,000 for our scholarship program and blew past my expectations (which isn't easy to do!). We had a fantastic day at the Links of Gettysburg. The weather was great, the golf was better! We had so many people who donated and volunteered... too many to fit in the program this year! I hope to have pictures up as soon as I find the attachment to my camera :)

As I was standing up in front of everyone at dinner (175 people!), I was really struck by something. First off, I was so honored to be representing this wonderful community that comes together every year to support NCCF. Most people come back year after year, and have tirelessly supported our mission. One thing I've learned... never doubt the power of a small group of people can change the world (thanks, Margaret Mead!). My "job" gets easier each year because so many people step up to help... and it isn't always with a big check. They tell Dan's story, and next thing you know- others want to help in any way. So I'm going to refer to myself as chief snowball roller... just making that snowball and letting it loose from the top of the hill, and watching as it gets bigger and bigger the further it goes.

Second, and I said this at Dan's memorial on Fed Hill last March.... it only takes a spark to get a fire going. At Dan's funeral, the priest related Dan's diagnosis to God taking Dan into a dark tunnel, and leaving him with one single candle. With his candle, Dan lit those of others, until the whole tunnel was glowing. He made others feel less lonely, less dark in their own lives. And he showed us how one person can make a difference and keep making a difference. I hope that for those of us that support NCCF- when it seems a little stressful or we aren't doing enough- I hope we remember the power of one. We've given out 50 scholarships from an organization that was borne out of one person's thought to help others with less than he had. Dan knew nothing about cancer. He knew nothing about setting up a foundation. He knew nothing about giving out scholarships. He knew nothing about raising money. But he figured it out. He made an effort. And we are all figuring it out, learning as we go. I hope we take a step back and acknowledge that without cumulative efforts, 50 people would have a harder time staying in school. And those 50 people will touch so many more lives, sharing their story.

SO.... thank you all!!! We are doing amazing things. We will continue to do amazing things. I will always be here to help, but I can't do it alone.

Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.

Monday, September 20, 2010

2010 Waeger Cup

In case you haven't heard already...

The 6th Annual Waeger C.U.P. is right around the corner!!! Mark your calendars- Sunday October 17, 2010.

The tournament will be held at a new location this year- The Links of Gettysburg in Gettysburg , PA. We thank Mike Caporaletti and all the great people at the Royal Oaks Golf Club in Lebanon , PA for hosting us the past five years.

Although he only golfs with us in spirit now, Dan Waeger's legacy lives on in the winning attitude he instilled in others by living his life to the fullest, accepting every challenge, never feeling sorry for himself and committing himself to making a difference in the cancer community. The National Collegiate Cancer Foundation is founded on the principles Dan embodied, and will continue his legacy by serving other young adult cancer survivors.

The Waeger CUP was never about Dan's fight. It is about the 70,000+ young adults who get diagnosed with cancer every year, and those that love and support them. Cancer is the leading disease killer among 20-39 year-olds. Survival rates for young adults have not increased since 1975. Young adults and adolescents continue to be challenged with countless issues specific to their demographic making them one of the most under-served populations of people affected by cancer. And of the 400 cancer organizations in the U.S. , very few to none focus specifically on cancer survivorship issues faced by young adults. NCCF is committed to making a difference in the lives of young adult cancer survivors by providing scholarship assistance to these courageous and inspiring people.

Over the past year, it has been a real honor and testament to Dan's legacy to see so many of you become involved with NCCF. Earlier this summer, we had over 60 volunteers read close to 150 scholarship applications. Last week, we proudly awarded our 51st scholarship in just 5 short years. The reactions of the recipients say it all- some were moved to tears, and all commented that receiving such an award gives them hope for their futures that once seemed so uncertain.

Many, many people volunteered last year to pull off a great tournament, and we will need your support again in 2010!

Registration:
There are two ways to register for the golf tournament:

1) Visit http://collegiatecancer.org/waeger-cup.html

and fill out the registration form and mail it with a check to

NCCF
C/o Meg Rodgers
4858 Battery Lane #216
Bethesda, MD 20814

2) Pay by credit card by making an online donation by clicking the "DONATE" button on the left side of the page and send an email to waegercup@yahoo.com with your foursome or sponsorship information.

Please note that we've had to increase our golfer's fees slightly to $110.

Donations & Sponsorships
Even you are unable to join us, you can still help! We have plenty of sponsorship opportunities, ranging from our $100 hole sponsorship to $1,000 title sponsorship. We take all donations, big or small. We can also work with you to enable corporate gifts, and even matching donations. And we rely on donations of all sorts of items to support our auction and raffle items. We need everything- tickets to Ravens or Redskins games, vacation home donations, gift cards from local restaurants and anything we can get!

On a personal note, Dan's family and I want to thank all of you for the support you have shown us since we lost Dan. We've been overwhelmed by the generosity you've shown and truly touched that many of you have become more involved in NCCF. All of us are so proud of the way Dan lived his life, and the impact he still makes on the cancer community, and all that knew him or of his story. Through the efforts of an ever-growing volunteer corps, NCCF will live on, and I hope you all will continue to join us.

Thank you for all your support!!!

Oh, please try to get your money and registration forms in by October 10th! Contact the Waeger CUP committee at waegercup@yahoo.com with questions.

2010-2011 Scholarship Winners

It's been a busy six months (!) since I last wrote here. Apologies for dropping off... it's certainly not that I don't think about Dan, cancer or the Foundation every day, but it's been awhile since I've even had the urge to write. Just wanted to update everyone on some important NCCF happenings.

We had a very successfull scholarship program this year! NCCF received over 175 applications, and we awarded 12 scholarships! It really does get harder every year to choose among the many qualified applicants. Special thanks goes to the over 60+ people who helped read all the applications. We will be posting writeups on our website soon, but here is a list of our winners...

Ryan Berardi
Lisa Berman
Erica Bury
Shilham Colegial
Laura Duran
Hans Fernandez
James Fowkes
Michael Holderman
Rachel Lozano
Sally Newton
Mario Terrell
Jessica Weller

One of the reasons I choose to continue to be so involved in NCCF is that I really like the fact we know exactly where the money we raise goes to... we know each of the 50(!) people who have been awarded scholarships in the past 5 years. When the admin gets a little tiresome, I can always pull out a scholarship application and re-read it. There are so few organizations that actually give out money to individuals. So it's nice to know who we are really helping.

Wednesday, March 31, 2010

NCCF Scholarship Application Now Posted!

The 2010-2011 NCCF scholarship application is now posted! Applications will be due June 1, 2010.

Our $1,000 scholarships are open to any young adult cancer survivor or patient between 18-35 who is pursuing higher education.

To date, we've awarded close to 50 scholarships in just 4 short years. What a great way to keep Dan's legacy alive, and keep everyone involved.

To view the requirements and download the application, please visit

http://collegiatecancer.org/scholarships.html

Please pass this information on to anyone who may be eligible!

Friday, March 19, 2010

From Bobby & Lindsay


From Lindsay:

Danny- How he was so special. I first met Danny in 2004 when I met his older brother Bobby. Ill never forget the day we were just getting ready to settle down, Bobby and I in the kitchen cooking dinner when the phone rang. I wasn’t surprised to find out that it was Danny... Danny wanted to find out about this girl that his brother was talking to was all about. Danny was so warm, funny, and caring. After Bobby got the approval I eventually went to Pennsylvania to meet the family, and a couple of years later I soon became apart of the family. Although the distance from California to Pennsylvania made it hard for both Bobby and I to hang out with the family, the calls to communicate between the distances kept coming. We all know what phone call came shortly after, that set the tone for the next couple of years for Danny. I like to look at March 16 as a day of celebration that he wasn’t in pain anymore and went to a magical place I could only dream about. As I wake up on March 17 I thank God everyday for the gift that was given to me in such a time of pain and sorrow. Jack Daniel Waeger was born one day shy of meeting his uncle but I am convinced that Danny is not only his guardian angel but that he was an angel sent from heaven. I write today because its Meghans and Jacks birthday and I know that Danny would want us to celebrate.

From Bobby:

It has been One year now since I lost my Little Brother. I find it really tough to write or talk about it. What can you really say?.. You can say you are upset, angry, sad, and all those things.. but it will not bring him back. He was a true Champion and role model and sucks he had such a short life. CANCER SUCKS (I remember him wearing a shirt that said this).

I can remember when we were in High School: I was a senior and he was a Freshman. He was so dedicated and gifted that he made the Varsity Soccer Team and we were able to play on the same team. I encouraged him to try Football and do a few other sports just like me. He said he did not want to follow the exact footprints I had created. He said he wanted to create his own path and his own footprints. He went on to play golf, which became a true love of his.

In life, it is usually the big brother that is the role model, but I must admit, Danny has been a Role model to me and thousands of other people who have met him. He inspiration, will-win attitude, and courage are just a snapshot of him during his short life. He certainly made his own footprints! He fought Cancer, Finished his MBA, worked a full time job, coached golf, and Fell in Love ... he would not let anything hold him back! He lived everyday to the fullest, he was a man of few words,.. but when he spoke, you better listen.. (he did not like to repeat things!).

I remember how Happy he was when he fell in love with Meghan. (I actually still have the email.). Meghan, Thanks for everything! You mean the world to Danny.

I am sad because he was never able to meet our son and his Nephew: Jack Daniel Waeger (born the day after he passed away) & He was not able to get Married to his beautiful finance Meghan. I am also sad because I was not able to come to his funeral and personally thank all his friends for their love and support.

I find Comfort in having Danny as a guardian Angel for Jack and our family. I often see things in Jack that remind me of Danny. Often I see Jack just staring into a particular place where Lindsay and I do not see anything.. and I think Danny is there watching him.

Ironically Danny was # 4 in Football (freshman year), and At 4:04 AM on March 16th we had a 4.4 earthquake a few miles from our home in California! I am not sure we will ever know the answers to many of our questions as to why/ why Danny, etc. But I find comfort in knowing he is in Heaven and in a great place, possibly playing golf at Sawgrass every day.

Danny did not want anyone to feel sorry for him, and said we all need to Celebrate life, rather than be upset and cry.. It is now Jack and Meghan’s birthday and there is plenty to celebrate, So I offer a toast of Green Beer to anyone who wishes to have one today. (in memory of Dan).

Best,

Bob, Lindsay, and Baby Jack




Tuesday, March 16, 2010

One Year

I don't have many words today. I am extremely sad that the world lost a great person a year ago today. He fought cancer as hard as anyone could. And he fought for people with cancer more than anyone I've met. It was truly an honor to be in his life, and to be able to call his friends my friends, and his family my family.

A year ago, people told me that time would heal all wounds. There have been moments when I wanted time to move quickly to get away from the pain, and sometimes when I wanted it to stand still so that I wouldn't be so far from having him physically here. We will all continue to move forward with our lives, but no amount of time will remove his memory or the impression he left on each of us.

I miss him. But I do not miss him sick with cancer. Our relationship was complete. We met, fell in love... we had our ups and downs, but when he needed me, there was no question in my mind I would stand by him and help him. One of the blessings of time passing is that I don't remember all the intricacies of his final weeks, and his decline. I really only remember that sweet smile and gentle soul.

I see him. I see him in his friends and family, and the incredible support they've given me. I see him now as spring is arriving and the sun is shining longer. I see pictures of myself now, and I see him in my smile. I see him in the lives that he has touched... in the countless people who remember him daily, and those who are affected by merely hearing his story.

I am sorry he is no longer here. But I won't live my life feeling sorry for my loss. I know how much I was loved- a true and precious gift. But I know Dan wants, rather- expects- me to move forward and live a great life. He told me as much. I know that he would have done anything to stay with us, but that he was very happy despite living every day with a disease that he knew would eventually take his life at some point.

To die at 26 (almost 27)... and to know you had no regrets. You fought hard. You were an exceptional person. You told people how you felt about them. You had something to believe in, and put others in front of yourself. You enjoyed your life, and lived with acceptance of your situation. You made no excuses. You did big things, but more importantly made people believe that big things were possible. You defined the words "hope", "optimism" and "love" for many people. And you did it all while being the most normal person on earth.... I want my life to end up like that.

When I asked Dan if he wanted to write a final blog, he said no. To be honest, I was surprised. But, as only Dan would do, he sat there quietly for a few minutes. Then he looked up at me and said "I've said everything I needed to say. It's not my fault if people weren't listening."

I hope people will go back and read his blog posts. So many people DID listen to him. We may forget sometimes, but we were listening. And the things he stood for are things we can share.

I didn't know how I would feel when this day rolled around. I feel some relief- I made it a full 365 days. And I am still standing. I haven't done things perfectly, but I SURVIVED.

I feel blessed to have made so many new friends over the past year- many of whom were introduced to me by Dan but that I never really knew.

I feel loved by a lot of people. Too many people, really- it's almost embarrassing.

I feel motivated to carry on Dan's work. I feel responsible to those that don't have what we did, and I understand that we were fortunate in many ways.

I feel sad for Dan and all that knew him. I feel sad his nieces and nephews will not get to know him.

And I am thankful. Thankful for the life we lived, and the life he left me.

Dan- you are missed every day. We all love you so much and hope that we are making you proud.

Monday, March 15, 2010

Blogs

Although this blog was originally for the two of us, and eventually for me, I know that it has helped those that loved Dan as well. It has been a place where we all share our thoughts, and where we know Dan's memory lives on. The comments and postings bring comfort to our extended family.

Please take the time to read the posts from Dan's family below, and feel free to add your own memories.

From Dan's Sister Cindy


Even though the Waegers are a pretty tight family, as Danny’s oldest sibling (9 ½ years older), I wasn’t always around for every event in Dan’s life. By the time he got to high school, I pretty much was already moved out of the house and attending law school. I didn’t always know all of his friends, who he was taking to the prom or his teammates on the golf team. However, I did meet many of them while I was home on breaks or for a birthday party, but I wasn’t there every day. I feel very fortunate to have been living in Baltimore when Dan was diagnosed with cancer since he chose to go for treatment at Johns Hopkins. I got to go to every appointment and Dan even lived with me for a couple of months while undergoing daily radiation. These definitely weren’t the best days of his life, but they were time I got to spend with him.


In 2006, I had to move to Hawaii. It was really difficult for me to be so far away from Dan and the rest of my family, especially in those final months. Those days when I feel bad that I didn’t get to spend as much time with Danny in his final 3 years as I would have liked to, I take great comfort in realizing how many people’s lives Dan has touched. I am grateful for how many friends he has and how many people were there for him every day. I am grateful for all of the people that he met through the cancer groups he was involved in, through the speeches he gave, through NCCF, through his job, and through just being a normal, outgoing young adult. I don’t know who all of these people are and most I have never and probably never will meet. But the fact that they were friends with Danny and cared about him makes me proud to be his sister and makes me feel better when I get down.


When I read an email or a blog or hear about something that someone is doing in Dan’s name or even someone saying that they only met him once but they remember him and pray for him, it makes me realize that while Dan’s time was short, he made a big impact and people really cared about him. Knowing that so many people cared about him consoles me when I am having “one of those days.” I want to thank all of those people for everything you have said and done, your thoughts and actions has been one of the things that has helped me through the past year.


Thanks,

Cindy Waeger Fee

From Dan's Sister Holly


I admit I’ve been more emotional the last few weeks, and more sad, and many more things have just reminded me of Danny. With all these thoughts flooding my head lately, so have images of the last few weeks of his life – not all of them joyful or pretty. But, in times like this, I try to reach for the more joyful memories and hold on to those. Even as Danny was close to the end, we managed to find joy each day. But, I think a part of Danny wished for us to remember life before he was sick. I think he appreciates the inspiration he was as a cancer survivor, but that’s not all he was. He was a brother, a friend, a son, a golfer, a guy, a kid who left his room horribly messy, who had his lazy moments, who believed he could talk to dogs like Cesar, who loved ketchup, who enjoyed cheap beer, and who once rode an ostrich and hugged a rhino!

To remember him this week, I’d like to share a few photos of this Danny to try to re-enforce these memories and push out some of the not as joyful ones. I hope you enjoy as much as I did finding them!




From Dan's Sister Patrice

An excerpt from the last letter Patrice wrote to Dan-

Danny
,
I have tried to write this letter so many times but writing a letter cannot begin to express the real feelings I have. The Most Important thing I want to say is that I LOVE YOU with all my heart. I ask myself over and over WHY? I still do not understand why you are going through this and why it is not one of us. The only reason I feel an ounce of peace is because you seem at peace with it and you have been so strong--so I know that I must follow your lead.

It is amazing HOW MANY people lives you have changed for the better. I hope that what I have learned by watching you makes me touch even a small % of the people you were able to touch in your life.

I am so proud of you and honored to have you as my little brother.

I am so glad I got to share all of our childhood experiences with you. Your presence in my life has helped make me a better person. The lessons you have taught me I will make sure to instill in my kids.
I can still remember the day when Mom told us she was having a baby. You were the only sibling I remembered as a baby, I remember telling my friends that My Mom is going to have a baby and being so so excited! We all loved you so much that we would fight over you and would pull your arms out of the sockets. We still love you this much and tug at you in new ways that may drive you crazy at times but know that it is because we love you!

With everything that is happening I keep remembering how smart you were as a child. It was always like you were more ahead of your time---more wise and knew things that a normal child at your age would never know. And I realize now that your whole life you have been more mature, more wise--maybe that is why you are a deeper thinker--it is like you were an "old soul" and had inner wisdom. I believe that possibly this is some explanation of how you can handle all this so well--you have inner strength and wisdom--well beyond your years.

I am so glad you found Meg and I will still never forget the day when you called me to tell me you were engaged. I had never heard you SO HAPPY in all your life--I could just tell you were beaming from ear to ear. it was so wonderful to hear you in such a total state of bliss. I am so happy that the 2 of you found each other and have shared as much happiness and love as possible in these past 2 years.

I will think of you and your “will win” attitude every day despite how much heartache it brings right now. Your strength, determination, courage and winning attitude will live on in our household forever.
I love you more than this letter can ever convey….
Love, Patrice



From Dan's Dad

As the first anniversary of Dan’s death approaches I have been thinking more and more as to how much I miss him.

How I miss yelling at the “infallible “referee during his HS soccer games about a particular call involving Dan’s play. How I miss playing golf with him but never being able to score lower than him. I realized that at an early age he exhibited toughness, enough that when 2 of his siblings would pull on his arms from opposite directions, his elbow would painfully dislocate. Ultimately, after multiple occurrences, he “grinned and beared it” and we learned to put his elbow back into place without an ER visit.

Beyond any physical sensitivity he had a wonderful emotional sensitivity. As he matured he became a romantic. He was truly smitten with Meghan and was a creative romantic when it came to her.

It is said that you can tell a lot about your child by observing who he hangs around with. Dan chose his friends very carefully as evidenced by their loyalty to him during his illness and after his death. He also looked up to and emulated his siblings and stepbrother, Brendon. I am sad that they can no longer enjoy their mutual companionship.

He loved his co-workers and his employment at NCCS, and had ambitions that he did not live long enough to achieve.

When you raise a child and try to the best of your ability to educate them and set them free into the real world, a parent always questions if you did enough. I learned that while he attended graduate school and after graduation he matured and I saw first hand that Dan was well equipped to enter society as well as maintain a positive attitude and inner strength to work thru his treatment.

I’ll never understand why God chose him or our family for this tragedy. There are thousands of books written about the complex issue and questions surrounding death, each containing scholarly answers. I believe that his death brings me closer to life, closer to my adult children, grandchildren and close friends. A life we should enjoy in his honor. He died without fear and with very few disappointments.

My disappointment is that I wished he lived longer and then I could have loved and respected him longer.

Wednesday, March 10, 2010

Memories- From Dan's Mom

I've received a lot of nice notes and emails this week. Dan's mom Cicily sent these pictures to me along with a few words about him.


All moms who love being a mother have special feelings for their final baby. Danny was my "baby", even into adulthood and to the end. Look at his beautiful smile. He was the most perfect baby, always happy and easy going. I used to tell people that Dan could not have been a more perfect baby is he were Jesus himself. Dan was the most laid back person I ever knew, and it started in his infancy. He was always so pleasant. I'm surprised he learned to walk because he was always being carried by his 3 older sisters. I miss him so very much! Cis


This is one of my absolute favorite pictures of Dan as an adult. It was taken in Jan. of 2004 when Dan and I went to Kenya to visit his sister Holly and her husband EJ who were working in Nairobi for 2 years. Dan and I were blessed with a 3 week trip to Kenya. What a lovely time to bond, way before cancer was in the picture. Dan even reported to his siblings that mom was not a pain in the butt, despite my weird sleep rituals. This particular photo was taken on one of the safaris we took with Holly and EJ. It brings me many pleasant and happy memories. Cis

Monday, March 8, 2010

3/16

Many people have asked what I will be doing next week to mark the one year anniversary of Dan's death. I have to admit that the topic was causing me stress, as I am sure it was others who are trying to figure out what to say to me or even do on their own. I really did struggle with it. Dan died on March 16, and my birthday is the next day. For those that don't know me, I love my birthday. I was born on St. Patrick's Day (in a car, mind you- kudos mom and dad for pulling that one off). Since I am Irish Catholic, and spent every year having my birthday celebrated at my parent's annual St. Patrick's Day bash, I had come to know that when March 17 rolls around, there will be a party.

Last year, Dan and I actually talked about the potential that he might pass on my birthday. I actually asked him not to- as if he could be so kind to grant me that wish! Well, he actually did. Even more amazing... he managed to send me flowers all on his own despite his condition. Only Dan would be on his deathbed and still manage to make sure there was one last gift from him.

As the anniversary has been approaching, I really didn't know what to do with the fact that one of the darkest days of my life is now the day before one of my favorite days. What does one do on the anniversary of a death? For me, it has become all about doing something Dan would have done. I know that he wouldn't have sat inside and felt sorry for himself, so that is not an option for me. For some, a good way to remember him may be hitting the driving range for the first time this season. Or it could be going for a short run (he was training for a marathon when he was diagnosed). Maybe it's just as simple as picking up with phone and calling a friend who has been down or you haven't talked to in awhile. Maybe it's having a Miller Lite and making a toast to him. Or taking the dog for an extra long walk. I can't imagine Dan would want us all to be sad- after all, it was Dan who left me with the 90/10 rule: It's ok if you want to cry, but limit it to 10% of your time.

And it was Dan who so often spoke about his attitude towards his diagnosis in this way- if you're going to sit around and think about cancer, you might as well do something about it. So after much thought, I decided that I wanted to go visit other young adults currently undergoing treatment on March 16 at the University or Maryland Cancer Center. I know some people think this is crazy- why in the world would I want to be around anything to do with cancer on that day ?!?!?! Well, because it feels like the right thing to do to honor Dan and respect the legacy he left us. And maybe just by talking to these patients, they might get a break from the monotony of the hospital. Plus, I decided to bring a few gift bags with treats because I would have loved to have had someone do that for those of us that were waiting during treatments.

And it also feels like the right thing to do for me. I've come to understand why some people are fireman or rescue workers. These are people who run into burning buildings or disaster areas when everyone else is running out. I used to think these people were nuts. Now, I think that these people go in because they know they CAN. They know what they have inside. I kinda get that now. I understand what I went through (still going through) is tough. But I am able to look back and realize that last year at this time was tough, and I made it through, so I will keep going. And instead of feeling sorry for myself, I am taking guidance from Dan- I am just going to make that small effort to do something good with what I've learned. So for me, I want to be no other place on March 16 then a place that allows me to give back and connect with others going through what I did. And then that night, I am going to celebrate the birthday of a family friend. Because Dan would have insisted on keeping going with all the fun things in life as well. As for my birthday- I look forward to celebrating it with family and friends and green beer.

I actually like that the anniversary falls the day before my birthday now. I like that I have a day to remember Dan, feel a little sad and hopeful. And then have a reason to celebrate the next day. It makes me feel close to him. And I know I will be able to see many friends and family during this time, which helps us all.

I hope you won't be afraid to laugh that day. Remember all the fun Dan had in life. The huge smile he always wore, and his character and good nature. He lived more than many of us ever will, and he will live on through us as well.

PS- If anyone does anything really fun, let me know! And please don't be afraid to post, write or call. Don't feel like you'd upset me or you won't know what to say. I think it's gonna be ok.

Monday, March 1, 2010

In Like a Lion

Well, the appointed month is here... many of us have commented that it can't possibly be a year since we lost Dan, and I am at the top of the list. I have never been one for anniversaries of bad days. Mainly because if I wake up and feel ok... then what- should I feel bad that I feel ok? But there is no denying that this month will be hard... his death falls the day before my birthday, and on the birthday of a dear family friend currently battling the disease. We were engaged March 21, and our wedding was to be March 28th. I can't say that I am looking forward to this month AT ALL... but I also can't hide away for the next 28 days.

I know it's a hard time for me, but it's also a hard time for Dan's family, friends, colleagues, my family and friends. No one really knows what to say- people say they can imagine it must be a tough time. I don't always know how to answer that line- some days, it's the last thing I want to hear because I don't want to be reminded (though I am so thankful people are thinking of all of us). Other days- you might get an earful from me in response!

Lately, I have been feeling very tired. I think part of it is my body physically remembering what it was like last year for me- not sleeping and a absorbing an awful lot of emotional trauma, as well as physically caring for someone by myself for the most part. I don't sleep all that well- at first, I thought it was stress of work or something else. But duh- the body remembers. At this point last year, there were no nights of restful sleep for either of us... we were in the business of round-the-clock care.

I am somewhat amazed at how much we handled ourselves. Pretty much all of of it... there were no nurses here, no doctors in & out... just a few hours of visits by close family and friends each day. How did we do that- so young and not knowing a thing about what was happening to Dan physically. But we managed, as we always did. Recently I had the chance to sit with my doctor for about an hour and ask her all sorts of questions about what happened those past few weeks... why certain things were going on physically with Dan. At the time, we just knew he didn't have long to live, but I had no idea what I was watching. And understanding that now has been a relief for me... I didn't even realize it was bothering me. As my doctor said- who else would you ever ask these questions of... you're not a doctor or a nurse or a health professional! It was all happening so fast that it was a very reactionary time for us.

Not long after Dan died someone told me that when he lost his mom, it took a full year to really start to acknowledge/understand what had happened. When I first heard that- I didn't believe it. After a year, you've gone through all the major holidays. You've gone back to work. You've put a little distance in between the loss and your everyday life. Well, I get it now. I just had no idea that it would take this long to comprehend the enormity of the whole situation. Not just the personal loss, but the complete uncertainty in my life now. I've learned that things can always get worse, and you just have to focus on what is in front of you at the moment.

After a year, people have this idea that you should be ok and that you should be moving on. No way. No way at all folks. After a year, I only look back and really how thankful I am that I just survived it. Moving forward is a whole other topic. Some days it seems like a dream. I imagine for Dan's family and friends that didn't see him every day, it feels like they just haven't talked to him in awhile. I've thrown everything at this grief to make it go away- triathlons, work, volunteering, traveling... filling the void without stopping to really acknowledge or understand what really happened. I've been told I've handled it exceptionally well- but by what standards? That I didn't "fall apart"... I have a little, at least in the way I normally do things. I don't feel sorry myself, because I did have Dan in my life, and he never felt sorry for himself. But to say that this isn't hard, that it doesn't hurt, that it doesn't make me question things... that doesn't do anyone else who is grieving his loss any favors. It doesn't say- it's ok to be angry and emotional and sad some days. What happened to Dan was tragic. For his parents to lose a son, his siblings to lose their brother, his nieces and nephews to only know the story of who he was, his friends... it's not right.

Dan made us all feel hopeful that we could take obstacles and overcome them. And when someone so young leads by such a strong example, we can feel guilty when we don't feel so positive. But Dan had all those emotions... our life wasn't inspirational every day. But what we did do was not attempt to solve everything in one day- we would have drowned. I didn't know him when he was diagnosed, but we spoke often of what it was like for him emotionally. And he had emotions- doubt, fear, loneliness. But he somehow managed not to be overwhelmed. Because he channeled them into good things- his passion for cancer advocacy, being a "normal" guy, his family and friends. He was an exceptional person- no doubt. And perhaps the greatest thing he gave me during our time together was the right to cry and be scared. He didn't let it go on too long, but I he always let me go when I needed to, and somewhere along the way this year I forgot about that gift. So it's ok... if you want to be angry, scared, sad, lonely... joyful, inspired, determined... it's plain ok. Get it out... do something with it. Don't withdraw. Do something with those emotions, even if it's just to say you miss him. Or like me- to say WTF happened here.

March is coming in like a lion folks.... it's gonna be a bumpy ride.

Sunday, February 14, 2010

Valentine's Day


Today I had the opportunity to film for a show called World's Strictest Parents. The premise of the show is to take 2 difficult teenagers and place them in a home with more discipline and rules for 5 days- sorta like Wife Swap. Anyways, as part of the show, the host parents and teenagers participate in a service activity. Which is how I was involved- I spent the day with the Coopers and Vicki and Caleb at the Ulman Cancer Fund's offices. The kids spent the afternoon doing various activities around the office- cleaning, organizing and stuffing information packets for people who need resources for young adults with cancer. I was there to help, and also to share my experiences with cancer, and Dan's story.

I didn't know what to expect- it was really a last minute opportunity. Being that it's Valentine's Day, and the anniversary of a very difficult weekend for us last year... I was happy to spend the day doing something productive. And it was cathartic to talk about what happened to me, and to us. I know it's a hard story for people to hear... no one wants to meet someone and learn about loss. It was very exhausting- I found it a little difficult to slip "hey I was engaged and my fiance died of cancer" into casual conversation while unpacking boxes. But there was a moment when I wasn't aware that I was being filmed, and talked very candidly to Mrs. Cooper about my life. She asked me how I could be so strong, and as I like to say- I had a great teacher.

Two years ago, Dan hung a huge sign across his office (I was working across the street at the time) wishing me happy Valentine's Day. He didn't spend much money at all, and it was the best gift I've ever received. Last year, Dan was too ill to pull off his normal over-the-top ideas. In fact, we were out briefly, and he didn't have the energy to make a stop to get a card. It was then that I knew he probably didn't have much time left. That night, we spent several hours in the emergency room trying to rectify issues with the drain they'd placed in his stomach. I guess that is the real meaning of a day like Valentine's Day- just sticking by the person you love no matter where you are. It was a tough day... I miss him terribly, and it hasn't subsided one bit. But I thankful to have these opportunities to share our story of love and commitment. It hurts, but it helps at the same time.

The picture above is from a photo essay I was asked to take part in for the Ulman Fund a few weeks back. The idea was to show young people affected by cancer. I was so happy that they chose the above picture. I am honored to have my life associated with Dan's, and I know he will always be a part of me.

This was my quote to go along with the picture:

"Watching someone you love live with cancer taught me that you can't look back at the past with regret, or fear that the future will be filled with dread. You have to live every precious moment with the appreciation and wonderment of what you've been given."

So I never imagined my "big break" in TV would come this way, but I hope someone will see it and be inspired so that Dan's legacy will continue.

Happy Valentine's Day.

Tuesday, February 2, 2010

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.

Monday, January 4, 2010

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.