Waeger Will Win

Two Years

2011-03-16T10:24:00.003-04:00

It's really unbelievable to think that two years ago this morning, I was sitting in Tastee Diner with Dan's sisters just a few hours after he passed away. It has been a long road.... one that is equally part devastating, enlightening, hopeful, scary and sad.

Two years. It's now been officially longer than Dan has been gone than he was in my life. That's weird. I think of that sometimes and realize how lucky I am to be so associated with Dan's memory for so many people. It was never hard to stand in the shadows of that big light he gave off. And I know that while days like today are difficult for me, I do not lose sight that people reach out to me. I hope that Dan's family and close friends receive the same, as it can be an isolating day.

One of the things that always struck me about Dan was his ability to be quiet & reflective during otherwise hectic times. I think back to the days spent at Hopkins when he received treatment. It was actually almost a social event, with Dan's parents, me and many friends who stopped by on their lunch hour or took time to spend the afternoon with us. While the rest of us chatted and caught up, Dan would sit there receiving chemo. Sometimes there were cupcakes. Sometimes the nurses came over to hear about all the Waeger babies and goings-on. People shuffled in & out to get coffee or food from the cafeteria.

I used to watch Dan and wonder how someone in such a vulnerable spot could be so himself. And the longer I watched, the more I realized that he spent most of that time sitting quietly with his thoughts- whether in the waiting room for a scan, getting blood drawn or sitting on the chemo deck. I never knew what we was thinking about and he never told me- was he scared? was he thinking about getting Rita's Italian Ice after the treatment? was he going over his last round of golf in his mind? or dwelling on happy memories? He was always deep in thought, and it never was the kind that made him upset or sad. It actually used to bother me that he didn't talk about his feelings much about cancer. He was as positive at home and behind closed doors than he was in front of others. And I always asked- how are you not going nuts all those hours we sit in the Hopkins? Dan just always said it was what he did to get by and keep himself focused. It was just how he dealt with everything, which I am sure also included taking care of all of us around him.

After two years, I understand him a little more. He was- day in & day out- dealing with a disease that could change in an instant. There was no time for fear- it would simply bury him. And not only did have to beat back a disease, but he had to fight hard to keep his every day life in tact. And he had to carry hope for so many- me, his family, his friends, co-workers and fellow survivors. Think about that- how many people get sick and go on disability? Dan took care of himself and all of us, and rarely asked for real help other than for a visit during chemo or to play in his golf tournament.

Those quiet moments were what he needed to re-charge, not just for cancer but for us.

I have learned many things about grief over the past two years, and am still learning. People like to say that time heals all wounds. Well, that is a really crappy and unfair thing to say to anyone who has lost someone. If that were true, than all of us would be thinking "What is wrong with me? Why don't I feel better yet?". Time passes- and that can be a cruel reminder and a relief at the same time. Last year, I felt the need to do something in the community to honor Dan on this day, so I visited a hospital and met with young adult cancer survivors. It was a relief in a way- to make it one year. To have survived that time. This year, it feels more appropriate to honor Dan in the way he dealt with things- quietly... to take the time to re-charge for me, and for cancer-related work.

That's the funny thing about time for me- it is both frozen and moving forward. In my mind, Dan will always be (almost) 27, wearing his Penn hat backwards, smiling and full of energy. But that is also sad for me. He will always be young and healthy. He is frozen in that moment, but has already missed so much- the weddings of close friends, the birth of a nephew and niece (with more on the way), the birth of his friends' children... his own wedding... his own children. I think about how he loved spring and would be excited to start golfing again and talking to his dad about playing soon. He would say his nephew Jack looks like him. He would be busy launching another scholarship program. He would be so proud of his brother-in-law's success and sad to see his nieces move to Cincinnati. He would be attending his niece's baptism this weekend and so excited to see her family from Bolivia. He would be talking to his other sister as her husband leaves for another tour of duty. He would be telling his mom he was alright and not to worry so much about him. And he would be going to Opening Day in few weeks with his friends. He would be dressed up in green tomorrow for St. Pat's, wearing whatever crazy beads or hat I gave him.

I know he would be proud of us- moving forward but keeping him in our hearts. But it hurts nonetheless. And it's ok to sit and be quiet for a moment. To remember and re-charge. I think it's kinda fitting now that Dan died the day before my birthday.... today is about honoring the past, and tomorrow is about the celebrating the future. For this moment, it is still ok to mourn.

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum.

Bring out the coffin, let the mourners come.
Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.

The Challenges of Surviving Cancer

2011-02-02T18:53:00.001-05:00

Just wantes to share the voice of a young adult cancer survivor again as a reminder of what it means to live beyond treatment.

The Short Story

I suffered a mini stroke (TIA) this week as a long-term side effect of the radiation I received for brain cancer in 1996. (Stupid cancer.) I am fine right now, recovering and will be getting a battery of tests at the NYU Stroke Center next week. I have fortunately not lost any cognition or motor coordination. I have a slight speech impediment which should be self correcting and my overall health is just fine. I'm home with my wife and children and laying low for a while.

The Long Story

On January 23rd, I awoke with a mild speech impediment and within two days noticed that symptoms had not improved AND I was having trouble touch typing. On January 26th, I asked my staff if they had noticed a change and they all confirmed my worst fears – something neurological was impacting my daily functionality.

A call to my oncologist resulted in a fast track insurance pre-certification for an MRI w on January 30. The preliminary radiology report indicated a new tumor on my brain stem, the pons, specifically. An emergency visit to my neuro-oncologist on Monday the 31st confirmed the structure however the nature of my symptoms didn't seem to add up to the suggested prognosis.

It is now the general consensus that I did NOT have a brain stem glioma and that the radiologist who originally read the MRI scans was untrained in neuro-radiology. However, with this relief, I had a different set of challenges to deal with – I didn't have cancer. I had suffered a stroke, also known as a transient ischemic attack or TIA; a known side-effect of brain radiation.

My body is on the path to healing and recovering. Next week, I am going for a battery of tests at NYU on track to enter their Comprehensive Stroke Care Center for observation, evaluation and further monitoring. Seeing as how my TIA was not caused by traditional risk factors, it remains uncertain what direction the NYU team will recommend but I plan on adding this to the list of issues I get monitored for each year.

This is my fourth brain cancer scare over the past 15 years. In 2003 I began to experience bilateral ocular migraines which blurred my vision and in 2004 I contracted ocular shingles. No tumor. The in both 2007 and 2009 I went spontaneously deaf in my left and right ears, respectively. (High dose prednisone fully restored my hearing three months later) No tumor. I've also had a lung cancer scare which turned out to he pleurisy and a testicular cancer scare which turned out to be a hernia.

I'm still here and nothing is going to stop me from loving my wife and my children and being the one of the most passionate cancer advocates in the country. I think the takeaway from this is that when the doctor says "You're cured. Go home.", that's never the end of the story *especially* for pediatric, adolescent and young adults living, through and beyond cancer. I may still be disease free but I don't feel "cured" as long as I – and millions others – continue to deal with the consequences of treatment. Surviving cancer comes at a price. With all these billions going to fund more and more mostly necessary cancer research, where is the money for cancer survivorship?

Let this be a call to action to start funding survivorship now. Go out there, raise awareness, raise your voice and raise hell. Fund survivorship now because remission is not a cure. Support the I'm Too Young For This! Cancer Foundation and our partner organizations in serving the survivorship needs of our generation.

I hope I am the only one around who can wear a t-shirt that proudly proclaims, "Thank God it was only a stroke."

I am still here. You are still here.

This is why we fight.

Stupid cancer. Survivors rule.

MZ

I Prefer the Roller Coaster

2010-11-24T12:07:00.000-05:00

Giving Thanks

2010-11-24T11:21:00.004-05:00

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)

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!
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.
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.
A good pair of comfy socks in the winter and flip flops in the summer.
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.
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.
My charming and precocious nieces... for the silly little things, like leaving notes on my refrigerator and their contagious laughter.
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.
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.
Red velvet cupcakes with cream cheese frosting (also my niece's favorite)
Dunkin Donuts coffee
Mani/pedis... best $30 you can spend on yourself and come out feeling like a new girl.
Mashed potatoes
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.
DVRs- who knew one invention could make life so much easier
Getting paid every two weeks
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.
Going to sleep every night and getting up every morning. I may not like getting older, but I'm lucky I am.
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!

A Long Way to Go

2010-10-27T14:23:00.002-04:00

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.

We Keep Winning

2010-10-20T11:56:00.002-04:00

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.

2010 Waeger Cup

2010-09-20T15:48:00.002-04:00

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

2010-09-20T15:41:00.003-04:00

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.

NCCF Scholarship Application Now Posted!

2010-03-31T15:14:00.003-04:00

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!

From Bobby & Lindsay

2010-03-19T08:37:00.002-04:00

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

One Year

2010-03-16T00:44:00.002-04:00

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.

Blogs

2010-03-15T09:01:00.003-04:00

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

2010-03-15T08:58:00.002-04:00

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

2010-03-15T08:52:00.003-04:00

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

2010-03-15T08:35:00.005-04:00

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

2010-03-15T08:32:00.001-04:00

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.

Memories- From Dan's Mom

2010-03-10T21:23:00.005-05:00

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

3/16

2010-03-08T12:57:00.003-05:00

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.

In Like a Lion

2010-03-01T09:10:00.003-05:00

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.

Valentine's Day

2010-02-14T18:58:00.004-05:00

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.

Fight or Flee

2010-02-02T22:58:00.003-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2009-2010

2010-01-04T20:21:00.002-05:00

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

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

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

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

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

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

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

Spirit of the Holidays

2009-12-11T18:40:00.006-05:00

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

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

“A Christmas present for my 5 year old daughter”

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

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

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

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

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

Thanks & Happy Holidays!

We Need a Little Christmas Right this Very Minute

2009-12-02T20:27:00.002-05:00

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

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

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

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

So thank you Veronica!

Giving Thanks

2009-11-25T14:38:00.002-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(Thanks Boss).

The Work Goes On

2009-11-17T12:21:00.003-05:00

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

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

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

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

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

It Only Takes a Spark

2009-11-09T10:58:00.006-05:00

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

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

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

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

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

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

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

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

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

Quiet Time

2009-10-28T14:44:00.003-04:00

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

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

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

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

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

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

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

Walk On

2009-10-15T18:03:00.002-04:00

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

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

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

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

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

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

Here are some of the lyrics

From "Stuck in a Moment"

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

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

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

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

And from "Walk On"

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

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

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

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

Waeger Cup V

2009-10-07T21:37:00.003-04:00

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

Could my nieces be any cuter?

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

All hail the champs!

Grey's Anatomy

2009-09-30T12:22:00.005-04:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hit 'Em Straight

2009-09-24T22:41:00.004-04:00

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.

Six Months

2009-09-15T13:56:00.003-04:00

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.

The Furthest Point

2009-09-02T10:10:00.005-04:00

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.

Swim. Bike. Run.... Iron Girl

2009-08-24T14:10:00.007-04:00

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!

Juggling Act

2009-08-15T22:24:00.007-04:00

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?

Man's Best Friend

2009-08-08T19:14:00.003-04:00

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.

Maillot Jaune

2009-07-27T17:11:00.006-04:00

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

First Birthday

2009-07-17T18:04:00.003-04:00

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.

Pretty Cool

2009-07-08T18:26:00.002-04:00

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!

Man in the Mirror

2009-07-07T22:36:00.002-04:00

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.

Tears of a Clown

2009-07-01T21:02:00.003-04:00

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.

Wearing of the Green

2009-06-25T16:07:00.003-04:00

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.

Happy Birthday

2009-06-19T08:21:00.004-04:00

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.

Another Year Older

2009-06-16T22:38:00.002-04:00

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!

Another Loss

2009-06-12T10:29:00.002-04:00

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

Starting Off on the Wrong Foot

2009-06-11T11:11:00.004-04:00

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.

Must See TV

2009-06-09T12:10:00.003-04:00

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

In Case of Emergency

2009-06-02T23:19:00.002-04:00

Every day, it amazes me at what things bring up the twinges of pain or disbelief that Dan is no longer here.

Things like having to change my "in case of emergency person". It feels like you wait your whole life to have someone to list other than your parents if something were to happen.

Things like finding files on my work computer that kept a list of blog ideas.

Things like finding a list of returned wedding gifts I never even knew we received while looking for a pen in a drawer at my parents' house.

Things like finding a booklet on planning a funeral tucked into old wedding planning file.

Things like looking at Dan's laundry that still sits untouched in the corner... but needs to be done because all my retail therapy has resulted in a shortage of closet space.

Things like developing tendonitis because I ran too many days in a row... knowing that Dan would say that I was overdoing it.

Things like realizing that grocery shopping for one is no fun and usually results in half of the food going bad.

Things like the fact that Dan STILL gets more mail & email than me. He was always very popular!

Things like being in a crowd of people but feeling much alone....

I know that you never get over a loss like this, although it becomes less potent some days. But then it's these little moments that stop you in your tracks. I don't really break down in tears. It's more like a little gasp of disbelief . I am honestly surprised at certain points that Dan is no longer here with us.

I don't really like being alone, but I accept it for now, fully believing it will be temporary. The more overwhelming feeling is not a sadness around what I lost, but the greater impact of what Dan did. He lost his chance to get up every day & do normal things... even things like going grocery shopping, doing laundry, returning emails and even feeling lonely every once and awhile. We're all still here, and he is not. And there is no real reason why.

Gone too Soon

2009-05-29T10:37:00.005-04:00

Yesterday, we lost another person to lung cancer. Kevin Brumett was just 29 years old. He and Dan had connected through the Lung Cancer Alliance. Their stories were eerily similar. Kevin was a wonderful advocate, and like Dan, shared his story in the hopes of combating the stigma associated with lung cancer. He was even a patient advocate at the pharma company that made his drug. My heart goes out to his wife Steph. The two were just married this past weekend. Although we never met them in person, I feel that the four of us were close. And unfotunately, our lives shared similar paths.

These loses really impact me. Many of the people that I met with lung cancer during Dan's journey have since passed on. Wonderful, beautiful, articulate people. People who faced death every day and lived full lives nonetheless. What we have to offer those with lung cancer in terms of treatment options & research is not enough. It's woefully inadequate. We need to do more.

I hope you will send a little prayer or kind thoughs for Kevin's wife Steph. Having been in her shoes just 10 week ago, my heart breaks for her. Like me, she has lost a lot of innocence at a young age. Bad things happen to good people. It's not fair, and it's not because God wouldn't give us what we can't handle. It's just life, which in the same moment, is hauntingly beautiful and tragic.

I am borrowing a poem that Rachel posted on her blog awhile back... actually, it was on the day Dan passed away. A friend framed it for me and left it on my doorstep. I read it every day, and it's a fitting tribute for Dan & Kevin, two brothers-in-arms....

You can shed tears that he has gone,

Or you can smile because he has lived.

You can close your eyes and pray that he'll come back,

Or you can open your eyes and see all he's left.

Your heart can be empty because you can't see him,

Or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday,

Or you can be happy for tomorrow because of yesterday.

You can remember him and only that he's gone,

Or you can cherish his memory and let it live on.

You can cry and close your mind,

Be empty and turn your back,

Or you can do what he'd want;

Smile, open your eyes, love and go on.

-Author Unknown

I think I am going to wear some green and yellow today as a nod to Kevin & Dan.

Speaking Up

2009-05-26T20:59:00.002-04:00

A couple of weeks ago I was asked to give the opening speech at a local Relay for Life in Frederick, MD, an event that raises funds for the American Cancer Society. These Relays are held in communities across the country. People form fundraising teams and then commit to walk continuously from sun down to sun up. Prior to this particular evening, I had never been to a Relay for Life. But Dan had formed a team of friends for the past several years at McDaniel College. He spoke once, and was scheduled to speak last year but an unexpected hospital stay prevented him from participating. Dan was very disappointed that he couldn't make it, but was impressed that his friends still went & walked. So I think it was only fitting that I was asked to speak... I was able to honor his commitment, and walk a few steps in his shoes

I am re-printing my speech below. Well, it's actually a combination of Dan's words from previous speeches and a few of my thoughts. I appreciate these opportunities to tell Dan's stories and convey the lessons he took from cancer. It's very helpful for me to have something positive to direct my energy into during these tough times.

My name is Meghan Rodgers. I lived with cancer for the past two years. And I will live with cancer for the rest of my life. Nine weeks ago, I lost my fiancé Dan Waeger to Stage IV lung cancer. He was just 2 months shy of his 27th birthday. It is truly an honor and an inspiration to be here with you this evening at the Relay for Life and share a little bit about Dan and our experience with cancer.

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I cannot imagine what it would be like to be 22 years old in the middle of pursuing a MBA and coaching college golf, basically living out the dreams of a young life… and then have someone tell me that I have cancer. And worst of all, it is stage IV lung cancer. But that was the exact the position my fiancé Dan found himself in May 18, 2005, nearly four years ago.

Twenty-two years old.

Athlete.

Non-smoker.

Lung cancer.

Those are phrases that just don’t belong together when you're 22.

I would often ask Dan what he thought when he heard those words- “You have cancer”. Of course he was scared- who wouldn’t be? But he also knew that he was facing a potentially life threatening and debilitating disease & he could do 1 of 2 things: feel sorry for himself or stand up and fight...........Dan knew he had no choice but to fight.

And fight he did. Forget what the statistics said. He lived almost 4 years with a disease that kills most people within a year. During that time, he endured almost 50 cycles of chemo, radiation, 2 major surgeries, hospitalizations and every side effect you can name-

He puked. Sometimes in the car on the way home from treatment.

He had neuropothy, edema, throat sores & rashes.

He lost his fingernails.

He lost his hair twice. I even shaved his head the second time.

And eventually, he lost his life.

But that is not the end of Dan’s story. Because there were many wonderful things that cancer could not take from Dan. Cancer did not take his smile. Cancer did not take his willful optimism. It did not take his hope. And it will not take his legacy.

Dan insisted that he never failed treatments. Rather, treatments failed him. He had a good life, and was determined not to let cancer stop him from making it great. So he didn’t stop. During the 4 years he was undergoing treatments, he also graduated with an MBA, started a career as a cancer advocate and founded the National Collegiate Cancer Foundation to help other young adult cancer survivors by awarding scholarships for college and graduate school.

He lived a full life as a son to two loving parents, as the youngest brother to four lively siblings & as an uncle to a growing brood of nieces and nephews. Dan never stopped living his life. And we never stopped living our life together.

----------------------------------------
When it comes to cancer, we often speak of people “fighting” the disease. And if someone ultimately passes away, we say that they “lost” their battle. From “winning isn’t the only thing, it’s everything” to “there is no such thing as second place”- we are a society obsessed with winners. But when it comes to this game called cancer, those of us in it know that judging “victory” solely by being cured would completely underestimate the importance of the journey and the day in & day out management of the disease.

Many cancer survivors & their loved ones, like Dan & me, don’t see a cure as the only possible cancer victory. Because the reality is that not everyone is cured of this disease. And even a cure is not a "one-size-fits -all" solution. Many of us would be ecstatic if cancer could be managed as a chronic disease- like diabetes. Or if genetic testing could just narrow down the options to avoid toxic and crippling treatments as a cruel form of trial & error to find the one that works. Or if we could find a way to just to minimize the daily side effects during treatments and beyond.

Victory in our cancer battle isn’t a straight win/loss scenario. For many of us, the ultimate victory is living a normal life, no matter what the odds are. That is the win we are looking for. We want to fall in love. Play on the work softball team. Maybe even just go to work. We want to have a few beers with friends on the weekends and take in a baseball game. We want to take vacations and celebrate holidays with our families. We want to be like everyone else. And that it is Dan and I wanted. And that is what Dan & did.

I met Dan two years after he was diagnosed. Many people often say that I must have been a brave person to date someone with cancer. I honestly have no idea what that comment is supposed to mean. Because those of who love someone with cancer just know them as the people they are meant to be, not as a statistic to be cited somewhere in a study. We love them, not the averages or odds they may represent.

In our life, Dan & I demanded as much normalcy as possible. But how do we do this when faced with cancer? Especially if statistically, we aren’t facing good odds?

It all starts with the right attitude. One of Dan’s favorite stories was about Pete Rose’s pursuit of the baseball’s all-time hit record. During Spring Training, a reporter asked Pete how many at bats he would need to get the 78 hits to break Ty Cobb’s hit record. Pete matter of factly replied “If I need 78 hits, then I need 78 at bats.”

The reporter laughed & said, “Come on, Pete…you can’t be serious. You’d have to bat a thousand”

Pete replied- “You know, if I don’t step up to the plate believing that I’m going to get a hit every time….then I don’t deserve to get up to bat at all.”

This story resonated with Dan because if he didn’t wake up every single day…

if ALL OF US here tonight don’t get up every day…..

Thinking that we can do it, that we can succeed, we don’t deserve to get up to up at all. This goes for the cancer survivors, and those that are beside them in their journey. And for those like me that lost a loved one, it means believing that we can make it through even though our loved ones are no longer here.

But even the best attitude and medicine won’t take us all the way. We may have the “What” on board, but we would never get anywhere without the “Who” on board. When I heard that tonight’s theme centered around The Wizard of Oz, I smiled. Because it’s the perfect analogy for a cancer journey. Dorothy couldn’t make it back home to Kansas without the heart of the Tin Man, the wisdom of the Scarecrow, the courage of the Lion and a great pair of shoes. She couldn’t make it alone.

We need a team to survive cancer. And that team extends beyond the hospital and our families and friends. It’s a community effort. From the neighbors that help with errands or food, to the co-workers who donate vacation hours and the bosses that let us work flexible schedules, to the volunteers at great organizations like the American Cancer Society…We need all the help that we can get.

But it’s not only cancer that joins us together tonight. Our unifying bond IS HOPE. For those of us in the land of cancer, the doctors, nurses, (the wonderful nurses), the friends, the families, the cancer survivors…some days, it may seem that the challenge is too big, too tough.

We hear about another friend, parent, or co-worker being diagnosed. We hear about those that make it, but a lot of times…we unfortunately hear about those who don’t. In difficult times, we must remember that life’s challenges are not suppose to paralyze us and bring us down, but help us discover who we are and the changes we can become.

We know that once cancer enters our lives, we will never be the same. There will never be a day when we don’t think of cancer. It will always present some sort of physical or mental challenge. So if we’re going to sit and think about cancer everyday, we need to realize that we can do something about it. We can do something positive. We can live our lives. And we can make a difference. We can HOPE.

Earlier I spoke about the definition of winning when it comes to cancer. Sometimes, it’s important to remember that we win when we don’t quit, we don’t give up, when we simply choose to keep moving. We win when we choose HOPE.

I know that you have a long night ahead of you. And we all have a long road ahead of us on this cancer journey. But I know that the reasons that brought you all here are the same reasons that won’t let you quit this Relay or quit this fight in the future. And one of those reasons we will never quit is Hope. It is Hope that will carry us through.

Because in the presence of HOPE, anything is possible.

Everyone here has a story. And I know that mine is no better than anyone else’s.

So from the bottom of my heart, THANK YOU for allowing me to share mine.

Phil

2009-05-20T19:16:00.005-04:00

I was very sad to hear that Phil Mickelson's wife Amy was diagnosed with breast cancer. For those that don't know, Phil was Dan's favorite golfer. Phil also has a reputation for choking during tournaments, a fact that I liked to tease Dan about, and that also resulted in phone calls from Dan's dad when said choking occurred. But Dan's reasons for liking Phil were more noble- he just thought Phil was a stand up guy who gave back generously to numerous charities.

Phil was Dan's guy... he even had a programmed distribution list in his phone to text his friends on the off chance Phil was making a charge down the back nine. Dan loved watching him play. In fact, the last thing Dan watched on TV was a recap of Phil winning the WGC-CA by 1 stroke over Nick Watney. That last evening, Dan wasn't talking much and had been drifting in & out of sleep. But when the highlights of tournament came on, he woke up to watch Phil's victory and then smiled & gave me a thumbs up. I'll always think of that moment whenever I see Phil.

I hope that the Mickelson family finds the strength to get through this next phase. Again, we are reminded, as with the constant press coverage of Farrah Fawcett's tv special and Patrick Swayze's tabloid coverage, that cancer does not discriminate. And I know Phil has one guardian angel wishing for more than a victory on the golf course this time around.

Four Years

2009-05-18T09:41:00.004-04:00

Dan was diagnosed with cancer four years ago today. Since I didn't know him then, the date doesn't hold much significance for me, though it probably does others. I don't remember Dan making too much of this "cancer-versary", at least not in the 2 short years I knew him. As time moves on, I realize there is a lot I don't know about his cancer experience. He was almost half way through by the time I entered the scene.

So, I am not really sure what would be a fitting rememberance of this day. I guess it's just another day, another date on the calendar to just go on doing what we do.

WWW.

Rays of Hope

2009-05-15T01:51:00.004-04:00

This week has been insane. On top of going to work, I finally managed to run 3 miles without stopping. You may remember from a post a couple of weeks ago that Dan & I would run the loop near the apartment. Dan always wanted to be able to get up to a 5k. Well, this week one of us finally made it! It only took me about a month to get up to speed (well, not really speed when you consider my pace), but I am glad I can do it now. Last year, we were going to do that 5k on his birthday, so I am little ahead of schedule.

Patrice (Dan's sister) and I also were lucky enough to attend the National Coalition of Cancer Survivorship's Rays of Hope Gala last night. Dan used to work at NCCS. And everyone there holds a special place in my heart because I always felt great that Dan had such fantastic support at work. And now many of the people at NCCS have become my dear friends.

The Gala was dedicated in part to Dan, and I know he would be honored. Last year, Dan had just gotten out of the hospital for a random infection. Despite carrying around a pump for his antibiotics, he insisted on attending the Gala. I think it was important for him to push through cancer whenever it came to NCCS because he represented so much of what the organization stands for- survivors!

I was able to write a little something in the program about Dan from my point of view. I am including it below

Dan taught me that surviving cancer was less about chasing a clean scan that may never come and more about living with a chronic disease. He got up every day believing that he could make a difference in his cancer journey, regardless of what the statistics said. His approach was simple. If he believed in a “Will Win” attitude, then others could, too. If he told his story, then those who weren’t so lucky could speak through him. And if he was going to sit around and think about cancer every day, he could channel his energy into something positive.

Many people think that Dan’s legacy is the contributions he made to other cancer survivors through his work at NCCS and the National Collegiate Cancer Foundation, the organization he founded after his diagnosis. While these accomplishments are outstanding, Dan’s true legacy lies in the way he lived his every day life. He was never angry or bitter. He acknowledged his fears but was not a prisoner to them. He refused to let cancer define who he was or what he could accomplish. He made an effort to help others when most people looked the other way. He wasn’t afraid to try new things or meet new people. He appreciated his great life and everyone in it. He never quit.

I know Dan would agree that our love story is one of the best parts of his legacy. Dan and I didn’t just survive cancer together, we truly lived. We laughed. We celebrated. When Dan came bounding into my life, it was immediately bigger and brighter, and full of endless possibilities and surprises. Although he is gone, the lessons he left keep me moving forward in my own life. Even though I will miss him every day, I know I will survive. After all, I had a pretty good teacher.

Here are a few photos

me & Mariska Hargitay (Law & Order SVU) one of the nights honorees

Patrice, Ellen (aka Boss Lady) & me

Me & Bob Schieffer (Face the Nation)

Hi Ho Hi Ho

2009-05-12T18:12:00.004-04:00

It's off to work we go! Today was the first day back to work for me. I can't remember the last day I was in the office, but things weren't normal for me there since January. It was a little more emotional than I thought- stepping back into my life as just me, and not someone's fiance is inevitable and normal, but still sad. I'd like to say that my attention span is back up to speed, but it's just hard to sit in one place. That, and I am not used to wearing work shoes which, although cute, aren't as comfy as the sneakers and flip flops I've been wearing the past few months.

But I am really glad to be back. It was time to go, and there is no point in building up more hurdles to have to jump over. I am lucky to have a job that I enjoy (at least from what I remember of it!). And it is really something special to work for a boss and a company that treat you as a person first, not a policy. But I did miss having a constant email conversation with Dan throughout the day. Knowing him, he would have had flowers waiting there at my desk or for me when I got home. I miss having my cheerleader. He was so happy for me when I found this job, and I know he'd be glad I am getting back a little of my own life.

So, I guess it was a little anti-climactic. As I said to my boss, there is no handbook for this situation. I can't confine my sad times to the weekend or at night, so I am sure there will be days that being at work will be tough. As with anything, I just do my best and make no apologies for a little flakiness or getting choked up. Just gotta get through it, not over it.

FAQs

2009-05-08T19:15:00.002-04:00

I seem to get a lot of the same questions from people I've seen over the past few weeks, so I figured I might as well get to share some of the answers with you.

1. How are you doing?- In general, I am ok. Certain days or moments are harder than others, but I have been able to get out bed every day. You don't "get over" something like this, you get through it. And I think once I had that realization, I've never felt very guilty about moving forward.

2. How are you really? (ie- You must be in shock)- Really, I am doing ok! No, I am not in shock. I have lots of opportunities to talk and write about things as I want to, and many different types of outlets for these conversations. I allow myself full freedom to do what I please, and don't set any rules other than getting out of bed and leaving the house.

3. Are you in therapy? Nope, but if I get to the point where I feel like I can't move past something, I would go. I do read a little bit here and there about grief, and take the tidbits that I find most useful. Today I spent several hours in the bookstore perusing the various titles on grief. I did read something that validated my view on not being completely stopped in my tracks with Dan's death. Many people who deal with a prolonged illness of someone they love exeperience what is called "anticipatory grief". In other words, you start grieving for someone way before they actually pass on. As the person with Dan every day, I knew the situation better than anyone else. My life changed completely 6 months before he died, and it continued to change. Yes, we had a "normal" life, but it was always about finding the "new normal". Although I can't pinpoint the exact moment, I did realize, even way before the wedding was called off, that Dan would spend the rest of his life with me, but I wouldn't spend the rest of my life with him.

4. Are you in a support group? Nope, but again, I would consider it. I did go to one last summer, but it wasn't helpful for me at all. First off, a lot of the support groups are during the day. So I guess clearly everyone that loses someone doesn't work! Second, as a young adult, my experiences are very different than the average person who experiences death. Not saying that one is harder than the other, just different. If there were a support group for people my age, I would get more out of it. As I said, I did go once or twice and found it to be counter-productive.

5. Are you working? No, I haven't been, but I go back Tuesday! I am excited and anxious, but feel good about it. I was 100% completely supported by my employer. I was treated like a person, not a policy. At first, I couldn't imagine going back to work because I felt very overwhelmed by the "administration" of death and NCCF. But once I came to grips that I wasn't going to be able to wrap up every detail for awhile, work seemed a lot more manageable.

6. What have you been doing? Well, I do admit that I like to watch Lifetime TV in the morning (a complete departure from my usual SportsCenter). Who knew that Reba and Frazier re-runs are so charming? I have alotted a lot of down time to myself. But I've been very busy with Dan's estate and NCCF, so I've been "working", just in much different ways. I've seen a lot of friends, but actually find it better to do one-on-one. I tend to find larger social things overwhelming at the moment. And I'm trying, but I am still not that big of a phone person.

7. Did Dan leave any special instructions? Yes, both in a personal letter and in a Will. I'll eventually share them, and some of you know them. But I feel like they deserve their own entries.

8. What is the best piece of advice people have given you? The problem with advice is that it's usually specific to someone's personal experiences. I get a lot of "you should do this or that". But I am just going to do what I need to do that day. I think the biggest mistake is to not allow myself to grieve. I don't really hide anything, and I do allow myself a few tears every day, regardless of where I am. But the best advice I go back to is Dan- If I don't get up every day believing that I am going to get through it, believing that I'll survive, then I don't deserve to get up. You know, I used to think Dan was full of it with some of the things he said, but I didn't have the right perspective to understand what he was really talking about. And now I do.

9. What is the hardest part? Some might think that being at home is hard, because Dan died here. It doesn't bother me at all, and I can actually find solace in the silence. I may move in time, but for now, I don't feel the need to (note that I successfully convinced my neighbor downstairs to not smoke under my window!). For me, I know I will get to move on and get to experience new things and adventures. So it really gets to me that Dan won't. While I miss him, I am still deeply affected by the actual experience leading up to his death- the last few weeks while he was home and the night he passed away. I know things that few do (outside of doctors and nurses), and in that way, have lost a lot of innocence. It's not that I am afraid that bad things will happen, I've just lived through them, and it's been a very profound and somewhat isolating experience at times.

10. How long will you write this blog? Well, as long as I feel like I have something to say. It does provide a very good outlet for me, and I think it brings others some peace as well. But, it won't go on forever. Like I said, I will never get over this. I am a much better person for the experience, and in many ways, stronger than I thought. When you watch someone you love go through what I did, all you want to do is take away the pain or prevent the inevitable. I can't do that anymore, but I can still fight Dan's fight. That I can do for him. And I always will, be it through NCCF or some other organization.

11. Is there anything positive that has come of this? We always said that no one gave us a guidebook for this, and we made up our rules as we went. The only rule in life is that we will all die. I now know what that looks like, and with that, there is a new need in my life to be generous with my love and generous with my life. But I am still me- I am still a little messy and not good at returning phone calls. Some things will never change, no matter how much insight I have into life ;)

12. Can you laugh? Anyone that didn't laugh at Cafe Disco on last night's episode of The Office is not someone I care to know.

Ok, that is all I can think of for the moment. But I am sure there will be a part 2!

PS- If you're wondering whether I got your card, email or Facebook note. I did, and I read them all. I would have liked to get back to everyone, but there were hundreds. And yes, I was the one that opened all the mail that goes to NCCF. And if you haven't gotten your thank you letter, I am almost done and they should be out this week!

Ms. Smith Goes to Washington

2009-05-05T19:16:00.004-04:00

Today was one of the best and toughest days of my life. I had the opportunity to join the Lung Cancer Alliance and over 60 other advocates in meetings on the Hill. We were there to gather support for the Lung Cancer Mortality Reduction Act which aims to develop an integrated plan that addresses prevention, early detection and research for lung cancer. You may remember Dan making a visit to Senator Mikulski's (D-MD) office late last year on the same issue. If you need a refresher, you can find more info and instructions on how to contact your state representatives here http://capwiz.com/lungcanceralliance/issues/alert/?alertid=13227571&PROCESS=Take+Action

My visits took me to meet with the staffs of Senator Cardin (D-MD), Senator Mikulsi (D-MD), Rep Van Hollen (D-MD), Senator Cornyn (R-TX) and Senator Specter (D-PA!). I was there with LCA staff members, lung cancer survivors and those like myself who have been affected by the disease. On the one hand- it was pretty cool. Pretty much the best field trip to DC that I've taken, and very powerful to be so close to the legislative process. It felt good to be an American.

Of course, the reason why I was there was the bittersweet part. I was very affected by the stories of the people I met. A 22-year old lung cancer survivor with a family history whose mother had to beg for a CT to get her to be properly diagnosed. A woman who lost her best friend 60 days after diagnosis, and who moved her friend in to care for her. There were several 7, 8, 9 year survivors who were lucky in that they were accidentally diagnosed and caught early. And then there was Jerry, father of 2 who lives right down the road from me. He'd already survived lymphoma twice in his late teens and early twenties. He lost his mother and his uncle to lung cancer, and is now battling it himself, stage IV and on Alimta, the same drug Dan was on for so long. He was also a sectionmate of Obama's at Harvard Law. Jerry recounted the irony of how Obama used the break between classes to debate politics and grab a smoke, while he had no interest in politics, yet found himself on the Hill today as a non-smoker asking politicians to solve the lung cancer problem.

I initially took comfort in being able to speak the same language as these folks. I know their doctors and nurses at Hopkins. I know the side effects of all the drugs they are on. I was so happy for Jerry that Alimta was working. I chatted openly about stage IV lung cancer. But it was heartbreakingly sad to know that, unless their cancers were caught early, many of these survivors are on the same path as Dan. Lining up one drug after another, hoping for one to work for a couple of years before throwing something else at the disease. But knowing that, even if they lived 5 years, it was highly unlikely it would ever be cancer or treatment-free, and it would not result in a cure.

I wrote awhile back about the hierarchy of cancer. I don't think that there should be one, but after spending a couple of days with LCA, I was reminded that there is. I can post all the statistics, go into the causes and arguements... there is no good reason for the way we treat lung cancer patients. More than 180,000 people are diagnosed every year, and 160,000 die each year. It kills more people that breast, prostrate, colon, liver & melanoma cancers- COMBINED combined. It's like a jumbo jet crashing every day. Survival rates haven't improved in 30 years. And yet, we invest less than 1/10 of cancer research dollars in our #1 cancer killer. (http://www.lungcanceralliance.org/facing/facts.html)

When you're living with the disease every day, you cannot think of the enormity of the what you're facing. You manage each side effect that arises. If you were diagnosed with breast cancer, you'd be welcomed into a community of passionate survivors. When you're diagnosed with lung cancer, you're looking for anyone that has actually survived the disease. We can't mobilize a race of 50,000 survivors in colorful t-shirts. Because no one is surviving.

I'm not going into the reasons why this has happened. We need to move forward, and keep asking for help. We know that people get lung cancer who don't smoke or quit 20-30 years ago (60% of all new cases). Yet, we don't have any way of testing people, and without early detection, you cannot survive this disease. I think I was lulled into believing that Dan's diagnosis was a fluke- it just doesn't happen. But it does, and his family should have a way to get tested!!!!

So today was very much about moving forward, carrying on for Dan. Literally walking where he walked, speaking to the same people he spoke to in December and wearing a yellow "Lung Cancer Sucks" t-shirt under my suit coat. I told his story, with my heart wide open, to strangers. I shed a couple of tears on Capitol Hill, and if that is what it takes, so be it. Because what we're offering people with lung cancer is crap. Dan had the BEST medical care. And for that, he endured around 50 cycles of chemo, radiation, two surgeries, another major hospitilization and every side effect imagineable. He took all they had to offer, and it wasn't even close to curing him. But he was considered lucky- he lived almost 4 years.

Dan surpassed our expectations of a survivor, and in many ways, made his story seem normal. It is easy to sometimes forget he had lung cancer because he focused more on surviving than cancer itself. He had no choice to hope and believe in miracles, because that was the best shot he had. It's just unacceptable. I remember at one point feeling jealous when learning that another lung cancer survivor, my friend's husband, had his lung removed because Dan couldn't. That is just insane!

I really feel blessed that Dan left this path for me to follow. His friends at LCA are now becoming my friends, and I have already found comfort in others who believe we need a change. Yes, I am bummed that I didn't get to meet any of the Senators or Reps (except Arlen Specter when he popped in). But I don't think it's the last time I'll be there. While I miss Dan, I mostly saddened by the mere fact that he lost his life. I don't feel bad for myself that he left me, but more that he had to go through what he did. It weighs heavy on my heart. We have a long way to go before we move the lung cancer mountain, but that isn't a reason not to try.

One of Dan's favorite quotes-

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." Margaret Mead

Who knew I'd turn out to be an idealist!!!!

PS- I was most upset today when I realized the parking garage attendant ate the Peppermint Patty treat I had saved for myself. Who does that?????

Oh, I made sure to get a Dan-inspired picture at Senator Mikulski's office. Yes- it was rainy in DC today. Hence the crazy hair! The other guy in the pic is my new buddy Jerry.

If a Tree Falls in the Forest...

2009-05-02T00:55:00.003-04:00

More like if a good deed is done and no one is watching, doesn't it make it all that much better?

I have spent most of the evening working through some things for NCCF. I've been sitting here for about 4 hours straight, and my shoulders and neck are aching! I attribute this to getting man-handled by a masseuse today. But I digress.

Some readers may not know that Dan pretty much ran NCCF all by himself. Since he's been gone, I've been trying to keep things moving. And let me tell you- I completely underestimated what it took for him to manage all the emails, the scholarship questions, the website, donations... and we haven't even touched the Waeger CUP yet! I feel overwhelmed some days, and I have plenty of people waiting to pitch in. Honestly, I though I was helpful to Dan the past couple of years with respect to NCCF but I hardly did a thing!

As if I didn't admire Dan enough, I think of him balancing a full-time job and treatments, and then having the energy to manage NCCF.... it really gives me a boost on the days when it feels like I am carrying a 25 pound backpack of grief, anxiety & anger. (Hence, the trip to the spa today).

I guess what strikes me the most is how subtle Dan was with respect to the effort it took to run his organization on top of everything else. He never complained, was always available to anyone that called and took the criticisms of people in stride. Note: it's sometimes very tough to do good- people are seldom satisfied. I used to listen to him as he spoke to people who called NCCF, often spending up to an hour talking to someone who was newly diagnosed or a parent frantic to help a child. He did all of these things out of sight and often without recognition. People called NCCF thinking they were getting a big organization, and they ended up getting Dan, the man behind the curtain.

Just when I thought I knew it all, I am learning so much more about Dan's will and spirit. When faced with a huge task, many will shrug and say "Well, I am only one man" and wait for someone else to solve the problem. But some days, it may only take one person to make that difference if he just steps up and tries.

Move Along

2009-04-28T19:27:00.003-04:00

As I was going through some records, I came across a binder of Dan's medical history. He kept every insurance statement (even though I never understood who actually deciphers what they say), every scan report and every doctor's note. I read through the notes and the scans all the way back to his diagnosis in 2005. Of course there are the requisite medical diagnostics (height, symptoms, etc). But what struck me was the little details- the actual notes of the doctors' impressions of their interactions with Dan. I laughed out loud when one described his "faint dusting of light brown hair" (even that was generous). And I could tell how concerned they were with his situation. One called him an "unfortunate young man". One commented on his calm demeanor and outlook. Often these reports noted that the discussions did not completely center around prognosis, but rather, his golf game, graduate studies, family and travels. It was evident that his doctors felt compelled to remind Dan that the odds of his survival were minimal, but that they, too, were taken with his unfailing optimism and hope. Dan knew the odds, but he just kept going.

What always struck me about Dan was that need to keep moving forward. Or just keep moving. I remember reading in one of Lance Armstrong's books that after he was diagnosed, even after treatments, he would get on the bike or go for a walk. If he kept moving, he wasn't sick. Dan was always moving, always planning ahead and always scheduling things. If he kept moving, he wasn't sick.

I can't help but think that, on an evening like this, when the weather is warm and the sun is setting... he'd come home from work, and we'd head out on a run. He had been training for a marathon when he was diagnosed. Even though he knew he may never run that far again, he still wanted to run. So off we'd go on a little jog. It was never more that the 1 1/2 mile loop on a trail down the block. And it was usually only for 20-25 minutes, running for a minute and then walking for a two minutes. He'd tell me his lungs were burning. But he loved getting out. He even put a little training plan together to maybe get up to a 5k. If he kept moving, he wasn't sick.

I get it now. As with grief, you have to keep moving. If you keep moving, you won't get stuck. If you're moving, you can give yourself a direction. You're making a conscience choice to do something... anything. If you keep moving, you won't sink.

So I'm off to take a spin around the loop we used to run. Just to keep moving.

Spring Has Sprung

2009-04-24T13:31:00.004-04:00

Well, there has been a lot of seriousness on the blog lately! Cancer, grief, mourning- can't get more serious than that, so I guess it goes with the territory. Some people may wonder why I'd want to be involved in the cancer movement at this point in life. Well, it's pretty simple. I need to know that people not only survive, but also live full and long lives after cancer enters their life. Dan firmly believed you could, but it's been hard to remember at points over the past few months.

So on this beautiful, fantastic weekend here on the East Coast, it's the perfect time to put the doom and gloom aside for a bit. A weekend of football, biking & bbqs awaits. Plus, it's the perfect weekend to put the windows down and the music up and sing along. Get out there and feel a little sunshine and shake a little of the grief off. A time to celebrate just being here, making it through this time!!!

I am going to borrow the rest of the blog with a recent email from Andre, one of the scholarship winners from NCCF. We became pretty friendly with him over the past 2 years, and he went through some tough times & dark days post-cancer. Well, I was happy to learn that Andre just celebrated his 4th anniversay of being declared cancer free from stage IV lymphoma. Yes! People are surviving! Living!!!! Here is the email I received from Andre after he'd learned of Dan's passing.

Meg-

When I heard about Dan I really didn't know where to start. In fact, I started crying. Why? Well, to be honest, if it wasn't for Dan and the NCCF I would not have been able to study abroad and see the world in Spring of 2008. However, just sharing this, I feel, isn't enough. I am desperately searching for words to truly articulate this being whom I never actually met. But has had such an impact on and in my life.

My journey for my education has been a long and tumultuous one. Supporting myself financially, emotionally, spiritually, and all the other "lly's" that I can think of as a cancer patient was painful prior to discovering NCCF. I was hellbent on studying abroad as a part of the Semester at Sea Spring 2008 voyage. I was searching online for scholarships directed specifically for students that confront and/or have confronted cancer. Lo and behold I stumble upon NCCF and I apply. Little did I realize the friendship that would blossom from this application. I submitted all documents and to my surprise a few months later - right on time before my deposit was needed I found out that I was a recipient of the scholarship. When I recieved the check for my program it read "André, you're an inspiration. Stay in touch." And I did exactly that. I emailed Dan while abroad and even sent a postcard from one of the countries - can't remember which one exactly. There wasn't a day I didn't think about Dan. Why? I didn't only think about how the scholarship benefited me, but I thought about, and still think about, how selfless Dan was to start this organization to help individuals like myself.

Upon my return from studying abroad I was ssssooo depressed. Anyone who has studied abroad may be familiar with the "reverse culture shock." Well, I had a serious case of it. I called Dan in tears approximately 3.5 weeks later. I was on the verge of a nervous breakdown, literally. And instinctively, I called Dan who helped me gain my composure - folks, I was going through it. Dan and Meg emailed me and called to make sure I was okay. As I slowly but surely came out of my slump I was able to talk to Dan on the phone about Semester at Sea, and not just the Post-Traumatic experiences of seeing 13 countries, seeing the beautiful complexities of world, and eating SO much food! I had a chance to apply for this years scholarship which I was awarded and encouraged to keep up the good work as I spoke to Meg and Dan on the phone. Thus, now having the honor of being a two time recipient of the NCCF Scholarship. Moreover, I told them of my interest and exploration of the dance program at my university. Dan said that it'd be nice to come to NYC and watch me dance. So maybe that's why it's quite challenging to fathom the reality of his transitioning.

However, even as I write this I think about the fact that he will in fact watch me dance, because as my grandmother told me, "You never know when you are entertaining angel." However, I beg to differ. This angel I am aware of.

Thank you Dan for being a light in my life and I promise to continue to keep your legacy and light lit.

Live, Love, and Laugh.

André

The Survivor Hierarchy

2009-04-21T21:52:00.004-04:00

The other week I read a post from a young adult cancer survivor on Facebook. He was recounting his experiences at a conference where he was interacting with other young survivors. The point of his post was that, compared to the experiences of others, his cancer journey was "relatively" easy and when he compared his story to those of his fellow conference attendees, he felt that he could hardly call himself a cancer survivor.

Here is a bit of what he wrote-

"As the moderator of the panel, I told my story first. I spoke of my three months of high fevers, losing thirty pounds and night sweats. I spoke of being admitted to the hospital in January, having surgery and being diagnosed with Stage IV Hodgkin Lymphoma. I spoke of going through intense chemo for six months and how lucky I was to come back cancer free in June. I spoke of how I couldn't wait to finish treatment so I could start going to concerts and baseball games. Then my fellow panel members told their stories. I heard a story of at 32 year old who was diagnosed at 6 months old and spent the last 31 years going to doctors to make sure their hormones were properly balanced. I heard a story of a 20-year-old girl fighting breast cancer whose family carries a rare disorder that affects their tumor-suppressing gene. I heard a story of being diagnosed with neuroblastoma at age 6 weeks and still dealing with he effects of her treatment as a 25 year old. I heard a story of being diagnosed with three different types of cancer over the 28 years of this person's life.

As these stories played out I learned what the true definition of SURVIVOR is and that I’m not a survivor by any means. For me to have a six-month span between diagnosis and a clean scan doesn’t make me a survivor. Who the hell am I to complain about not feeling well for SIX MONTHS compared to the hell the last 30+ years these true survivors have been living in?"

Sorry for the long cut & paste but I was really struck by this because I had been thinking about where someone like me fits into the advocacy world. As a caregiver (BTW- I really hate that term!!!), and as one who saw the side of cancer that no one wants to ever see, I can't NOT be forced into action against this horrid disease. But at the same time, I am very aware that I will be one step outside the survivorship ring. After all, I haven't had a personal diagnosis. Yeah, yeah- I was certainly there and survived my own experience, but I didn't have the drugs pumped through me. I didn't lose my hair (though mine did turn really gray!). I didn't get rashes or edema, vomit, experience neuropathy, or have a belly full of fluid with a drain. I didn't die. I didn't have cancer, but it was there every day in my life.

So to come across a cancer survivor questioning his own place in the food chain... I really got to thinking. The cancer world is just like the rest of the world. There are politics and hierachies. There are competing agendas and people just pushing their own agendas. There will be people who compare and judge others. There is discrimination (welcome to lung cancer!). There are cute marketing slogans. There are celebrity endorsments. People want to make money. People want to be recognized.

The truth is- none of it matters. The young man who questioned his right to call himself a survivor is no different than me. No matter where we are in life, at some point everyone wonders whether they are worthy. In the cancer world, who cares if you are! Dan was the biggest survivor I know. Just because he is no longer here doesn't mean you remove that title from his list of accomplishments. I can't fret over whether someone would want to hear my opinion (you all know I am not afraid to bring it!). Change and progress isn't achieved by sitting on the sidelines waiting for someone to put you in the game. You just have to figure out how to get in that game.

So instead of wondering where I fit in on the cancer ladder, I am changing my attitude. I am just overwhelmingly HUMBLED by the obstacles others have overcome. I am MOTIVATED by their example. Some of those people are cancer patients with the physical disease. Some of those people are the friends and families who face their own emotional and mental battles. I've seen those people. I sat with them in waiting rooms at Hopkins. They have become my friends. I am one of those people.

Tweaked

2009-04-15T16:03:00.005-04:00

Grief is an intensely personal journey. No two people cope the same way. However, I think everyone that grieves searches for something to make themselves feel better. And in the early months, it can pretty disappointing when nothing really makes you feel any better. I can see how people might figure- what's the use? So I take a different approach. Instead of searching for the elusive "feel-good" moment, I reason with myself that trying various activities won't actually make me feel worse. So if something isn't going to make me feel worse, I figure it's worth a shot.

So I've been at the gym pretty regularly. And even though I want to be lazy, I know that moving around for an hour or two won't ever make me feel worse. Well, that was until yesterday when, within 30 seconds of working out with my trainer, I came down too hard on a jump and tweaked something in my back. It's nothing serious, but how annoying! The worst part is that is made me short of breath as inhaling makes it hard to breathe. So all day yesterday I did nothing but pop advil and watch tv. I was so irritated that on a day when I had a bunch of things planned that wouldn't make me feel worse (gym, massage, laundry), the fates had a different plan. I just had to sit there and do nothing.

I don't really have that much to complain about in terms of an injury. I was up and monving gingerly today, though I won't be lifting weights this week. But as I sat there yesterday, I found myself thinking of all the days I would call Dan from work. He'd be on the couch watching TV, feeling lousy. And wishing he could just get up and do regular things. It was another "a-ha" moment. I wonder how many times Dan did things just because they wouldn't make him feel any worse. Everything was always worth a shot. For him, those long days weren't a gift. Just like for me, time isn't always a gift. It just needs to pass.

I Should Have Stayed Home

2009-04-11T20:18:00.005-04:00

I'd like to think that time has been suspended the last four weeks. It's pretty easy to do but eventually, the routine of life catches up to you. The past few days I finally decided to do my spring cleaning and other normal chores. I need to rejoin the real world. This kick in the rear was sorely needed- you do not want to know what was growing in my refrigerator.

So today I went to the grocery store. I've been putting it off because Dan & I really liked going to the store together. We're those people who have to go up and down every aisle, even though we bought the same thing every time. Anyways, as I approached the checkout, I gasped out loud and my eyes welled up with tears. There, on the cover of a tabloid, was Patrick Swayze. He looked all too familiar to me- like an end-stage cancer patient. Given the state of the world today, I shouldn't have been surprised that the media would exploit his disease to sell magazines. I like a good gossip magazine, but these pictures were downright cruel and crossed the line. But they are the face of cancer.

Although I have mixed feelings about him, I was overwhelmingly sad to see him exploited. The end of someone's life is such a private & humbling experience, and he has lost the right to choose how he shares it with people. I feel so privileged that Dan chose to spend his weeks, and ultimately, his last moments with me. He put a great deal of trust in me by allowing me see him as vulnerable as he was and as sick as he was. Seeing the pictures of Patrick Swayze just brought all of those images back. And so there I was, with tears streaming down my face, totally irritated that I can't even go to the grocery store without being smacked in the face with cancer.

As I drove home, I was reminded AGAIN how cruel cancer is. Like Dan, you can have the best attitude, the best doctors, the best support system, a healthy lifestyle... it makes no difference. Sometimes you get shafted and get cancer anyways. Those that are fortunate to survive go through hell to get there. Chemo is pumped into your body for hours on end, hopefully destroying the cancer cells but also the healthy ones. Radiation literally burns you. Surgeries leave scars. But hopefully, the cancer tornado spits you out with no evidence of disease, but the evidence remains nonetheless.

And for those who don't survive, they end up praying that the cancer takes them quickly to minimize their suffering. It's not like the movies. A video montage with some meaningful soft rock song doesn't flash before your eyes. With Dan, I was terrified that it would be the cancer in his lungs that would take him (literally hardening his lungs until he couldn't breathe) or that it would get into his bones causing relentless pain. I suppose we're "lucky" that it was the liver that failed out of all the potential outcomes. Lucky- ain't that a kick in the shins. I don't feel so lucky now. Cancer ravaged his body, as it doing to Mr. Swayze. This disease doesn't discriminate. Death is no joke.

So sorry for the doom and gloom on this post. I generally try to be positive but sometimes the truth isn't pretty. In the movies or on TV, you can spot the cancer patient as the one with the scarf on her head or the one will slightly pale skin and an IV. These depictions often downplay the reality. If you want the reality, you can now find it at your supermarket checkout. So regardless of whether Mr. Swayze's lifestyle choices contributed to his disease, I can't help but be moved by his situation. Because even though he has all the advantages of celebrity, he is going through what millions of other people do when they succumb to cancer. It's painful and heartbreaking. It's lonely and terrifying. And it should be a private matter.

I should have used Peapod and stayed home to watch the Masters.

Grrrrrrrrrrr

2009-04-07T13:08:00.005-04:00

Yesterday, I went to the Oriole's Opening Day. I didn't have too much interest in the game, other than seeing the Yankees lose. And of course, to see Dan's friends who are just a great bunch of people. Last year, Dan and I went to Opening Day in Boston. It was one of only a couple of trips we ever took that didn't have anything to do with cancer. I remember he was still recovering from chemo, and was so bummed because he wasn't feeling 100% to go on a mini-crawl that I had planned to show him all my old haunts.

It's hard not to be angry at cancer. Yet, if it weren't for cancer, I would never have met Dan since the only reason he moved to the DC area was to work for NCCS. When you are the healthy person in a relationship where someone is sick, life can seem completely focused on the the one who is sick. I used to joke (though sometimes I probably believed it) that our relationship was all about Dan. He would always hate when I said that, because in our daily life, he focused so much attention on me and being as normal as possible.

But it's true- people's first question when they would see me was "How is Dan?" Schedules had to made around chemo, and sometimes we missed out on events because Dan wouldn't be up for it. I can see how, if a relationship wasn't strong, cancer could cause havoc. Ummm- you better like spending a lot of down time together! And even in a strong relationship, anger and resentment appear. Yes, I was super angry at points... sometimes that Dan got stuck with lung cancer (you know you know way too much about cancer when you wished that it was testicular cancer or something "easier"- not that any cancer is easy, but some are much more treatable)... sometimes that Dan was so darn postive and focused, making it tough on myself and others to be vulnerable or outwardly concerned... sometimes that we were never told "you have 6 months to live, go travel"... and of course, we're all angry that he was gone too soon.

One of my good friends, a cancer survivor herself, said that she often thought that the cancer experience was harder on her husband than it was on her. She had doctors, nurses and all the resources directed at her. Yet, her husband (like many in his shoes) was kind of floating out there alone. But he was still expected to work full time and pick up all the slack around the house. It's true- there aren't a lot of resources other than support groups (which aren't even helpful for people, myself included) for significant others. Even Dan, who knew more about cancer than anyone, often commented that he could talk to any cancer survivor and offer advice, but when it came to talking to me about what I was going through, he was totally lost.

So yes, I was angry. And now, I wish I hadn't been at certain points while Dan was alive. But I also had a lot more insight into what was really going on, and the realization that no matter how hard we tried, Dan's odd weren't good and there wasn't anything I could do about it. But, I always come back to the fact that without cancer, I wouldn't have known Dan. And that, even if we'd known we were spending our last Christmas together or going out to dinner the last time, it wouldn't have made a difference. We're only human, and **newsflash** none of us are getting out of here alive.

Dan knew that he would eventually die of cancer. He just didn't know when. I think that is why he was able to live the way he did, with no regrets. Statistically, he should've died within 6 months of his diagnosis. Everything else was gravy. I think the anger that some of us feel is that we can't understand how he could just be so normal, and not let us in on what was going on in his head and not acknowledge how serious things were. But, it wouldn't have made a difference to him. He was probably angry at points, but he didn't waste too much of his time on it because I think he was keenly aware that he was living on borrowed time.

For me, the anger has given way to motivation. So I hope I am following in Dan's shoes with respect to when he was diagnosed. I am finally able to believe in a lot of things he said, as opposed to wondering if he was for real.

But I am sure he is probably angry at one thing- the Pirates were picked to finish dead last in their division... again.

PS- Was going through pictures and found some from Opening Day last year- Can you tell were at Fenway in April? Nice win by Beckett today!

Delayed Reaction

2009-04-02T23:43:00.004-04:00

It's true- when you are in the middle of an intense situation, your perspective is definitely skewed. In our situation, it's probably better that we never really focused on just how serious Dan's illness was the last few months of his life. We certainly sensed it (my Giving Tree blog entry) but I don't know that either one of us ever truly acknowledged it. I'm not sure that it would have bought us anything. I knew what metastic cancer meant to others, but never applied it to us.

The other day I saw a picture of Dan the week before he passed. It was shocking to me to see how much weight he had lost... almost like I hadn't been with him through the end. At that moment, for the first time, I realized how sick he was. Obviously, as the person with him all the time, I was acclimated to his appearance and limitations. As his physical capabilites declined, I was somehow able to just see him as I always did... though it's clear to me now that I was compensating for the situation. A gift that my mind gave me.

As I move through my days, I've also been increasingly aware how many medicine bottles are in the house... empty pill bottles, half empty pill bottles, cough medicine... they are everywhere, in every room. I can't move the cough medicine stashed conveniently in the bathroom and kitchen. I am just so accustomed to seeing them. And of course, they weren't always there. Just in the last six months, when life was not about being cured, but about overcoming whatever physical challenge popped up.

In the moments when I miss Dan so intensely, these reminders.... the photos or pill bottles.... bring me back to the peace that he is no longer limited. He is not coughing or uncomfortable. His diet doesn't consist predominantly of smoothies and Ensure (that stuff is so gross, yet I can't throw it away). He was so sick, yet I never realized it until now. What a blessing. And I am only slowly realizing the impact of his illness on my own life. Of course, when you love someone, there is no other place that you'd rather be than right beside him. But I am noticing things I am able to do again that weren't always freely available... exercising, eating out, visiting with friends. I don't resent that those activities had all but disappeared those last few months. Rather, I am keenly aware that, now that I am able to resume them, I am a profoundly different person.

As I resume a more normal life, I am not tentative or remorseful. The days are tough, but I find that the few moments I get that I do feel normal are also happy. So even though I didn't realize how tough life was the last months of Dan's life, I am grateful that that "cancer" life resulted in the set point being in my life being happy. It would be easy to confuse grief with despair, but my perspective is not desperate. I am only more thankful and appreciative of Dan, and how knowing him, even as he neared death, changed my whole perspective on life.

PS- no karoake choice yet. I am still noodling. I may need to practice a few first.

Marriage Penalty

2009-03-30T23:39:00.006-04:00

Many of the readers of this blog know that last Saturday was supposed to be a pretty big day. The one that involved a white dress and a way-overpriced party. A lot people felt it was important for me to mark the day in a special way or be busy. Sorry folks- every day kinda sucks right now, and just because I was supposed to get married on a particular day doesn't make it any worse. I just bummed around on the rainy day. Just like I will do again on some days in the future.

At the time we cancelled the wedding, we didn't acknowledge it on the blog. I suppose some thought this was because it was too painful. Truth is, we didn't even have time to deal with it at the time it was all happening. A few quick phone calls and emails to vendors undid a few months of planning. My mom and dad graciously and discreetly stepped in to handle the rest- picking up the wedding dress, formally notifying the guest list, and worst of all- dealing with the gifts. To this day, I am not sure what happened to them. I think some are still at my parents house in-limbo.

I know people felt terrible about the whole situation. After all- a wedding is supposed to be one of the big three personal event that make a person's life complete in today's world... wedding, first home and kids. Truth is, the wedding planning gave me something to do for a couple of months while I was unemployed and while Dan was undergoing chemo. Even when we were planning, all of the things we focused the most time on were for other people- the gifts and special touches at the reception. In most ways, we knew the wedding wasn't really for us, but more like a big "thank you" to friends and family. And we had a lot to be thankful for with respect to our support system.

To this day, I don't really care about the wedding the way you readers probably think I do. Truthfully, it saved me a lot of money that ultimately allowed me to stay with Dan the last few weeks of his life and now to take time for myself. Sure, it was fun to plan, but I am a planner. I enjoy the process of planning most anything.

We did get a marriage license, and thought we'd go to the courthouse by ourselves when Dan had a good day. Well, he never felt well enough for us to go after that (which should tell you something), and it never really mattered to us that we weren't married. It certainly would've saved some headaches with respect to the fact that a fiancee has no legal rights, but we dealt with it the best we could in the time we had. Though it's a real kick in the shins to be told that, as a fiancee, you've got no rights and that legally, you're no different than the average schmo on the street.

As I was saying to the Boss Lady today, the only reason not having the wedding bothers me is that it was the one thing that cancer took from us during our time together. Until the very end, cancer never prevented us from traveling, working, running... basically enjoying a normal life. Dan & I were more than adament about having a normal life. I remember when we met with the priest the first time last April to schedule the wedding. When he learned that Dan was a cancer survivor, he asked us if we wanted to move the wedding up as opposed to having it in 11 months. You know- just in case. I remember Dan saying that we just wanted the normal process, and 12 months seemed like a good timeframe (we would've married 1 year and 1 week from the day we got engaged).

Would we have changed it if we'd known what was in store? Probably not, because after the cancer spread, the wedding ceased to be of any real importance, other than to have a big party for friends and family. And when it did spread back in late June, we didn't know what would really become of our relationship in some respects. We were optimistic, but realistic.

So yeah, I didn't get married. Cancer took away the party, and it irritates me just for the fact that Cancer got us on that one. I don't think it's as tragic as people would like to think. What would've been tragic... what if I decided that I couldn't hack it, and since I wasn't married, had no obligation to stick around for the tough stuff. People get divorced over illness. People leave. Dan's illness brought us full circle. No regrets.

So sorry if I seem emotionally detached from the whole topic of my wedding. I guess I don't buy into the traditional notion anymore that life begins when you say "I do". Not being married doesn't make the loss any easier. Being married wouldn't make the loss any easier either. I just find solace in the fact that I had a good love story. As Dan said to me "We had a good run". A pretty great run. Of course, I desperately wish that run was a lot longer, but man, what a wonderful ride no matter how short.

Remembrances III

2009-03-27T20:05:00.002-04:00

Following is Ellen Stovall's speech from the funeral last week. Ellen was Dan's "boss" at NCCS, and a fellow cancer survivor. She was an important influence on both Dan and myself with respect to the way Dan was able to advocate for himself during his treatments, and with her incredible attitude and fighting spirit.

I am here today because Dan Waeger knows how much I hate speaking in public and he would do anything to say, “Gotcha, Boss Lady.” Yes, “Boss Lady.” That’s what Dan called me. Being someone more than old enough to be his mother, Dan loved to tease me, and I loved nothing more than coming to work every day for the past three years to be teased by Dan. I feel almost apologetic today as I realize that I and my co-workers of Dan’s at NCCS got to spend more time over the past few years with him than any of you gathered here.

I am here representing a group of colleagues and friends who Dan met through his work at NCCS. Some of them have traveled great distances to be here and some are agonizing that they couldn’t make the journey due to other commitments. Nearly all of them took the time to recount a “Dan Moment,” and I hope these stories help paint a picture for you of what it was like for us to live with, work with, play with, and to love our Dan.

For all of us at NCCS, one of our favorite memories is of Valentine’s Day 2007. Meg was working directly across the street at the big Discovery Building in Silver Spring and Dan was talking with his second mom at NCCS, Nina, and asking what he could get Meg for Valentine’s Day. Never a one with small ideas, Nina suggested that Dan put up a poster-paper sized sign across the expanse of windows in our office that when facing out read “Happy V Day, Meg. And so, the office Valentine’s Day project unfolded and Meg was the envy of every woman at Discovery and at NCCS. Dan had come up with the most romantic gesture of the day. No one could wipe that Technicolor smile of his off his face for days. From that day on, he was known as “Dan the Man,” much to the jealousy of many men in the lives of the women at NCCS.

For me, one of the best memories is of a cold spring evening nearly a year ago at Wrigley Field in Chicago with Nina, Michael, Meg and Dan. We drank lots of beer, threw peanut shells, and suffered major heartburn from the Polish kielbasa that Dan insisted I had to eat—not one, but two of them—as that would be the only way to authenticate me as a true Cubs fan. That ballgame kicked off four days of indigestion that we endured while trooping around a big convention center at the annual meeting of the American Society of Clinical Oncology. This is where we meet once a year with many of our supporters, including leading pharmaceutical companies and clinical researchers and practicing oncologists from all over the world.

Dan was loved by all of our friends in many companies—several of them have written me or told me stories about what an impact Dan had on them.

One special friend, Linda House, wrote:
I remember the first time I met Dan. I remember so clearly his face - oh my - that smile that brightened everyone around him - and the way it opened his eyes - and when you looked into them, there was such energy, life, possibility, acceptance of others, hope, and friendship in there - frankly that I've never experienced with anyone before or since. There are many things I think about that make me smile - his leaving work last St. Patrick's Day and earning the name O'Waeger, him asking me if he taught me to text message or if I already knew how!, him being my silent accomplice for the practical joke on Nina, his playful disgust when all I had to offer him during a rainy day in Indiana was an old and broken casino umbrella (versus the nice golf umbrella he is accustomed to), his challenge to our CEO at Ely Lilly--not knowing he was present, and more . . .I also promise to get to a point of having a Dan - worthy way to honor him - I just need the world to brighten back up a bit first .

From Stacia---
I will attend Mass here tomorrow morning and remember Dan privately. I will most certainly plant yellow flowers to remind me of his smile - the smile that could light up any room. I'll plant white flowers to symbolize the peace which I pray he has found - for him to take strong, deep breaths without a cough and to hit every ball long and straight off the tee.
But I'll also plant some red flowers to remind me that no matter what anyone says, this just wasn't right. Perhaps it symbolizes the restlessness that Meghan talked about, for that is the only word that can describe what I've been feeling this week.
The fact of the matter is, I don't think Dan would have wanted an all yellow garden planted for him. I think he would have welcomed the red. I think he would want us to feel restless.

Whether it was speaking to gatherings of pharmaceutical executives, including the CEO of Eli Lilly, or to Adrienne’s class at Bullis where she had organized a dodge ball game to benefit Dan’s Scholarship Fund, Dan’s message was clear and sound and left people feeling like someone special was in their presence. He often told these audiences one of his favorite Pete Rose stories that he adapted as an attitude about living his life. He told them that if Pete Rose didn’t wake up every single day thinking that he could hit the ball every time he came to bat, he didn’t deserve to be at-bat. Dan’s message was that we can all succeed—that we can pass a test—that we can get an A in class that may not be our specialty. We need to believe that we are going to get a hit or score the game-winning goal, or we shouldn’t be in the game in the first place. He told them “Don’t just be good at something—challenge yourself to be great.” He went on to say that “in difficult times, we must remember that life’s’ challenges are not supposed to paralyze us and bring us down, but help us discover who we are and who we can become.”

And from Ty—
I have a Dan story but I didn’t share it yesterday in the staff meeting because I didn’t want people to think that I hadn’t been here long enough to speak of anything concerning Dan, but I do.

Dan would always call me T-Dubya for Ty Williams. I was working on putting together some Board materials in January and Dan was getting some figures/facts for me. Dan comes over, adds his bit of information and we just chatted for about 60 seconds. Then, as he was walking back to his office, he said, “Thanks. I love you, Ty”. Without thinking, I responded, “I love you too, Dan.” Then it hit me – did my coworker just say he loved me? I thought, I never did anything special for Dan; I was just being a team player and assisting in what was one of Dan’s projects. I just thought that was the coolest thing. That someone, who isn’t a family member or best friend or significant other, would say what I think God wants us to share with all humans – that we love them!

And lastly, I want all of us who are here today to feel the comfort of the sentiments expressed by one of our Board members at NCCS. Dr. Brad Stuart, the Senior Medical Director of a Hospice in California, who, after reading Meg’s blog about winning, wrote the following to the NCCS staff and Board:
I went to bed last night with Meghan's profound words in my head woke up with this. Our work is about survivorship, but something profound happens when one of us no longer survives. Yes, winning is important in life, and it gives us a kind of euphoria. We feel that rush of joy when the treatment works. We've won, at least for now. On the other hand, losing gives us pain -- Dan left a Dan-shaped space in the lives of everyone who knew him, and that loss hurts. But when someone dies the way Dan chose to, when they live all the way to the end with a quiet kind of passion, with devotion, perseverance and love, as they go they lift up the edge of life and we get to look underneath, inside ourselves toward a place where differences come together, where winning and losing no longer contest each other, where grief and a certain kind of joy merge together so at some point you can't tell them apart. Then underneath that, there's a silence, and gratitude that we all are in this together, sharing our pain and our joy. Sometimes grief lets us go down to the bottom of this well and bring up the water of life, which feels like tears of joy. So maybe Dan won after all, and in this way we all win.

Once again, I want to appreciate the chance we have to do this work together. Dan doesn't get to go on with us, but the memory of how he lived, and how he chose to die, lives on within us.

Karoake

2009-03-25T23:12:00.005-04:00

So I just returned home from catching up with an "old" friend. We had dinner, and then moved to another bar for a drink. And it happened to be Karoake Night. Don't worry- I didn't get up and sing, but it is hard for me to not sing along with those that do brave the karoake gauntlet. So I sang along, and observed the scene around me. I found myself laughing at moments, and some moments literally turning over my shoulder to make a comment to Dan. We spent a lot of time at Karaoake Night at Savannah's in Kensington... though he never stepped up to the mic.

It was a reminder to me that I am caught between two worlds. My old "Dan" life, and the "yet-to-be-determined" life. Still the same me, but at the same time, a whole new me. Let's face it, I've learned things that people don't learn until they're 80. My faults and positive traits are there for me to see in equal measure. It's a confusing time for me. I am allowing myself to be shuttled among different people each day. Kinda like a huge Meg mosh pit.

I don't know what grief is yet. When I wake up, it feels like the same way you do when someone throws you in the pool fully clothed... heavy. I could care less about things I used to obsess over, like where my coffee comes from (although, Dunkin still rules). I don't cry.... haven't shed a tear in any meaningful way since he passed. I wonder if Dan was just a dream, but if he was, why I don't really dream at all. I feel like I am in a state of shock, which is normal, so "they" tell me. I almost feel worse for other people's loss than I do my own. The absolute worst part of the funeral for me was seeing Dan's friends cry. I just wanted to make them feel better versus seeking any comfort of my own. I feel a profound sense of loss, but it's more from observing other people than actually feeling it myself. As the saying goes- "De Nile" ain't just a river in Egypt.

I suppose I am seeking all the normal avenues of recovery. I had a good shopping spree. Fortunately, I snapped back to reality just in time. I almost dropped a couple of hundred dollars on a white suit... John Travolta in Saturday Night Fever had nothing on me. But I was able to realize pretty quickly when I being to cross the line. Though I looked pretty darn sharp in that suit!

Making the initial first step to get out tonight was a little weird. But I was able to remember that I like to karaoke, and that Dan claimed to be a fan. I can still laugh and joke. I am still me, but with a new sense of purpose. Maybe I am Meg 2.0.

And, I do need a go-to karoake song if the guy in the bar ever plunks down a book with 10,000 options!

Rememberances II

2009-03-23T19:29:00.002-04:00

Life is definitely quiet. I suppose it will feel that way for awhile. I don't really feel up to writing much more yet- maybe by the end of the week.

Below is James' speech. James is Dan's brother-in-law, and to say that Dan looked up to him and admired him is an understatement.

INTRODUCTION
My name is James Urban – I am Patrice’s husband
You’ll have to bear with me on this a little bit…the speech I had been planning on doing was supposed to be a best man’s toast, but…
I am honored and humbled that Dan wanted me to speak at his funeral
I am not going to try to be eloquent or profound
I am going to try to be real and speak from my heart
In thinking about what I wanted to say today, I couldn’t help but think that Danny would want us to celebrate his life rather than mourn his death
That’s what I am going to try to do

CONNECTION TO DANNY
I have always thought of Danny as my brother – how could I not?
Danny was 8 years old when Patrice and I started dating
I remember rushing downstairs when Patrice and I got back to the house after dates because I wanted to go wrestle with Dan or watch whatever game was on – at the time I’m sure Patrice didn’t think that was very romantic, but I know she knew one thing…I sure liked her little brother
I remember one time when I was off at college playing football…Danny was 11 or 12 and he rode alone with my parents to a game – now, they are my parents and I love them, but I don’t think I would want to sit in a car alone with them for 5 hours when I was that age – it didn’t bother Danny…he wanted to see me play
Dan and I always had a special connection…
We were the same height
We had the same hairline
We both went to small colleges and had great experiences playing the sport we loved
We both got into coaching as a way to get a Master’s Degree and continue being around that sport
The connection with him was so strong that our first born child is named after her Godfather – her name is Brielle Dannie

DANNY
He was just one of those people that it’s easy to be attracted to and who you wanted to be around…as you might expect with Dan, it’s all the great little subtle things that I remember fondly and will miss the most…like…
Ketchup…have you every seen anyone use more ketchup than Dan? I mean he used to put it on his turkey at Thanksgiving
Dogs…man he loved dogs…I think he related to them on a different level than any of us
Gifts…whenever you gave Dan a present you always knew if he liked it or not because he’d just tell you
Andy Van Slyke…his favorite baseball player of all time…Danny liked him for all the right reasons
Golf…he was a purist…I never once saw him cheat on a golf course
Phil Mickelson…his favorite golfer of all time…by the way, in case you missed it, Phil won in dramatic fashion on the final hole just hours before Danny passed away
Silence…he was one of those people who had the unbelievable ability to sit and say absolutely nothing

Danny was at a very exciting time in his life…coaching golf, halfway through graduate school, training for a marathon…but then we got the call…

CANCER
Danny and I were looking forward to a guy’s weekend of golf, beers, and late night Playstation
Instead, we got emergency heart surgery and intensive care
A few days later we got the terrible news
I can vividly remember sitting in that room in Holy Spirit Hospital and Dr. Leal, a compassionate and caring man, getting down on one knee at Danny’s bedside and saying, “Dan...you have cancer…[SILENCE]…it’s ok to be scared…[SILENCE]… I’m scared…[SILENCE]…this is very scaring stuff we’re talking about.”
Danny shed not a tear…he clinched his teeth, looked Dr. Leal right in the eyes and said, “Tell me what I have to do to beat it”
At that exact moment I remember thinking “If he can’t beat it, nobody can”
Recognizing the rarity and severity of what he was up against, Dr. Leal got Danny quickly connected with the loving folks at Johns Hopkins – Dr. Donehower, Keith, his beloved Margaret and all the others who helped along the way
His nearly four year battle was a roller coaster ride…there were ups and downs, twist and turns, fast and slow…all the while Dan stayed the course and kept driving the train straight in his quest to beat back this terrible disease that was eating away at his insides
Somewhere along the line I remember telling him the Pete Rose story which he liked so much…the gist of it is that during Spring Training before the season a reporter asked Pete Rose how many at bats he would need to get the 78 hits to break Ty Cobb’s all-time hit record…Pete matter of fatly replied 78…the reporter said, “Come on, Pete…you can’t be serious.” Pete replied, “Every time I step into the batter’s box I don’t hope to get a hit, I expect to get a hit.”
Danny didn’t hope to beat his cancer…he expected to beat it
People took his lead and drew from his determination and will and supported him in his fight…family, friends, co-workers, fellow cancer survivors, complete strangers…from the old to the very young…
Shoot, 2 year-old Brielle even got into the act and was coloring pictures to make her Uncle Danny feel better…she brought one particular picture to Patrice and she said, “Mommy, I made Uncle Danny a bootiful picture.” Patrice looked at it and said, “That is beautiful, honey. What is it a picture of?” She said, “It’s a picture of my poopy.” “Why did you draw Uncle Danny a picture of your poopy?” In all her 2-year old logic she explained, “Because it made my belly feel better when it came out, so it will make Uncle Danny feel better, too”…Needless to say, I think Uncle Danny really liked that picture
Despite all the love and support that was around him, I knew that Dan was somewhat guarded with his most intimate thoughts…I always felt like Dan needed someone that he could really open up to and share with…and along came Meg

MEGHAN
We got an email from Dan that went something like this…“So dot dot dot I met this girl…and I don’t know what IT is, but she has IT…and I told her everything about my cancer…”
Meghan was his best friend…his soul mate…his confidant…his one and only…his fiancé…but for a piece of paper, and I know in his mind, his wife…at the end, his nurse… at the very end, right by his side…
I think the natural inclination is to tell Meghan that you don’t know how she did it…imagining yourself in that position is unthinkable…you can’t comprehend how you could possibly watch someone you love so dearly dying before your eyes…
In my simple mind it is all very easy to understand…she loved him…she loved him with all her heart and to the core of her being…and despite all the pain, she was not going to let him go it alone…
This may tell you all that you need to know…not too long ago I asked Meg if she was OK with Danny’s wish to have her and her alone by his side at the end…without hesitation she looked me in the eyes and said: “OK with it? I’m honored. There is no other place I’d want to be.”
Meg…we’re honored. We’re honored to have you in the family and we’re so very grateful that you found each other and that you loved him so unconditionally

LEGACY
So where are we left to go? Frankly, 26 is just too damn young. We all loved him and will miss him dearly, but now what?
No matter how you define it, Danny’s legacy is huge
We’ve got the wrist bands…will any of us think that WWW stands for world wide web ever again?
The slogans…my favorite is “Life is 10% what happens to you and 90% how you react to it”
The acclaim…US News & World Report, USA Today – twice!, LiveStrong, Lance Armstrong Foundation, the Eli Lilly speech
The National Collegiate Cancer Foundation…ask the 10 students with cancer who are currently on scholarship what they think Dan’s impact is
The Blog…has anyone ever read anything so deeply moving and honest?
Though he is no longer with us, clearly he will continue to live on
How blessed we all are to have shared in his glorious life

And so now I say to you
Dan
Dan-E
Danny Boy
Dan-Butter
Mookie
Waegs
D-Dubs
Brother
Son
Soul Mate

YOU WON…YOU WON…YOU WON

HERE’S TO YA AND FROM YA AND TO YA AGAIN
IF I’D NEVER MET YA, I’D NEVER KNOWN YA
HERE’S TO YA AND FROM YA AND TO YA AGAIN

HIT ‘EM STRAIGHT, BOY

Rememberances

2009-03-21T09:51:00.001-04:00

Many have asked that the speeches given at Dan's funeral be posted. Here is mine- I will see about getting the others next week.

Dan liked to quote a lot of famous people in his speeches. I always told him that had plenty of material from the things that came out of his own mouth- so much so that I started to call them “Waegerisms”. I am sure that many of them are familiar you.

1. Life is 10% what happens to you and 90% how you react to it.
2. If you’re going to sit around thinking about something all day, then you might as well do something about it.
3. Attitude is everything.
4. If you don’t wake up every day thinking that you will overcome whatever curveball life throws at you, don’t bother to get out of bed.
5. Focus on the “who” you have on board in your life before you focus on the “what”.
6. Always make sure that people are having a good time and feel appreciated.

And there is one household rule that I’ve been trying to stick to- “It’s ok to cry. But leave it at 10% of the time. Use the 90% to do something productive about what is actually making you cry.” So 10% of the time is 2.4 hours per day. I think we can all abide by that. Plus, Dan always said I am an ugly crier.

Being in the fortunate position of observing Dan at home, with friends & family and during his advocacy work, I’d like to add one more to the list. One big thing I learned from his example by watching him every day.

He taught me that the biggest differences in life are not made by making the extra effort, but by being the one to just make the effort in the first place.

I hope we can all remember these “Waegerisms” as we leave here today.

I think they’ll look good on the back of the next batch of NCCF t-shirts.

Dan and I both love a lot of the same things- singly loudly to country music in the car, the NCAA basketball tournament, having a beer and hotdog at a baseball game, finding silly hats for every occasion, really bad reality tv shows, and creating instant traditions.

I can now proudly out Dan as a very sappy and romantic guy. And he loved romantic traditions.

I like to say that Dan knew how to make you feel like a million bucks without spending a dime.

One of those ways he made me feel special was in the form of letters we’d write, especially around holidays.

I’d just like to take a few minutes to share with you all some excerpts of a letter I wrote Dan about 7 months after we met for Christmas.

Dated December 20, 2007, I wrote this letter to Santa about Dan.

Dear Santa

As much as I love receiving gifts and ripping off the wrapping paper, I’d like to return everything this year.

I don’t want to be greedy because you already brought me the best present a girl could wish for, and being with him is like celebrating Christmas every day. Let me tell you about all the gifts he brings to my life- Peace, Joy, Love and Hope.

Peace
Thank you for bringing me someone who is teaching me to enjoy life and not be so consumed by the little things.

This is a blessing for someone like me with a Type A personality and alledgedly, overly-competitive.

Now that he is here, there is nothing more peaceful than just squeezing into the big green chair and doing nothing for hours… even if it means watching Phil Mickelson.

He lets me be myself and thinks I look pretty good in an old highschool sweatshirt & yoga pants.

He really gets a kick out of me, which makes me feel at peace with myself.

Joy
I know a lot of people that are happy, but I never really knew anyone who was joyful until I met him.

No words are necessary for him to express how excited or happy he is. Just that huge smile creeping over his face and then the brightness in his eyes, followed by the wrinkles framing his happy eyes. And there is that laugh.

I love to watch those eyes shine, especially when he shows enthusiasm for everyday things like seeing a dog on the street, playing with his niece, wearing his Christmas sweater or delivering on the promise of a perfect first date.

Seeing life through his eyes is like being filled with the sense of wonder and amazement at life like the feeling you have when you’re a kid waking up on Christmas and racing down to see all of the presents.

Love
As you know Santa, ours is an unlikely love story. He reminds me that life can be a true fairy tale.

He teaches me about love in a lot of different ways. First and foremost, love is fun and easy, and in his case, sometimes a little cheezy.

This doesn’t mean that there aren’t challenges, but with love, anything can be overcome.

There are moments now when all I see is love.

He is my best friend, my partner in crime, my confidant, my teacher and a good buddy.

Loving him makes my world bigger.

Hope
Santa, it’s all too easy to sit here and write about how he inspires hope in the people around him.

To others, he is the miraculous cancer survivor and the relentless advocate.

To me, he is just Dan. Dan in real life.

I think the qualities that make him so successful under those other titles have been there his whole life.

He is genuine and kind.
He is smart, goofy and a big kid.
He is humble.
He is patient, but not enough to be my golf instructor.
He is quietly and keenly observant.
He is empathetic and motivated.
He is a sappy romantic schmuck.
He is not afraid to dance or sing of key.

He is willing to try anything and never takes himself too seriously.

He is a loyal friend, a good son and brother and a doting uncle.

He has the remarkable ability to simultaneously see life through childlike eyes, but express himself with the wisdom of an old man.

He has all the qualities you hope to find in someone, but hardly ever exist in just one person.

He gives me hope for the future.

I feel lucky to know what love is, and to have someone by me that I admire and respect, and that I can learn from everyday.

I have fun and laugh all the time, even on those tough days.

And I have someone to work with when facing big issues, and something special that will always be worth fighting for.

I feel honored to be welcomed into his big, noisy, fun-loving family, and feel blessed to see him welcomed into mine.

So thank you Santa for bringing me Dan. I don’t need much else in the years to come, though for Dan’s sake, a boxer puppy would be nice.

Thank you Dan for bringing all of us together. Thank you for leaving such a wonderful legacy.

And thank you babe for writing such a beautiful love story with me.

Next Steps

2009-03-17T22:32:00.002-04:00

Thank you to all have reached out- it is a great help to hear all the funny and touching stories about Dan. I still plan on using the blog for myself and to communicate about NCCF. I hope you'll humor me. I miss my buddy, as I am sure many of you all do. I look forward to seeing many of you later this week.

Please find details regarding the funeral arrangements below.

Dan’s funeral mass will be at Friday March 20th at 11 am.

There will be a visitation period in the Church prior to the mass for anyone wishing to pay their respects to Dan. The visitation will begin promptly at 10am.

Please do not send flowers to the Church as it is during Lent, and flowers are not permitted.

St. Jane de Chantal
9525 Old Georgetown Road
Bethesda, MD 20814

After the mass, we hope that you will join us at a reception to honor Dan.

Positano Ristorante Italiano
4940 Fairmont Avenue
Bethesda, MD 20814

Dan will be laid to rest in a private family ceremony in Harrisbug, PA on Saturday.

Special Request:
Dan requested that people wear yellow and green on this day. He didn’t feel that suits were necessary either.

Yellow to honor his belief in the LIVESTRONG message from the Lance Armstrong Foundation.

Green to honor the National Collegiate Cancer Foundation. And it is his favorite color.

Donations:
In lieu of flowers, the family would like people to direct donations to NCCF.

National Collegiate Cancer Foundation
PO Box 14190
Silver Spring, MD 20911
http://www.collegiatecancer.org/

Keep Me in Your Heart

2009-03-16T22:45:00.006-04:00

Dan passed away at home early this morning. I am not sure if relief is the best word, but there aren't many words to describe the feeling. He lived with lung cancer for 3 years and 10 months. And when I say "lived", that grossly underestimates the contributions he made to all of us that love him and those that were inspired from afar.

I am afraid that I haven't quite figured out what to say. Dan was always the one to provide the inspiration or guidance, and he did that until his last day. I hope I was listening closely enough to him to remember everything.

There is nothing you can say to me to make me feel better. No bible passage or inspirational quotes. No anecdotes or memories. Please, don't try. In my mind, I know that what happened was a release for Dan. But that doesn't make me want to not throw myself on the ground and have a tantrum.

But I am still Dan Waeger's fiance. I know that life is 10% what happens to me, and 90% how I react to it. I know that if I don't get up every day believing it will get better, I shouldn't get up at all. I know that attitude is everything. I could go on with what I like to call "Waegerisms", but those will be for another post.

I am so very sorry for our collective loss. I hope that Dan is at peace, but that his spirit will be restless and visit us often.

It is quiet at home for the first time in months. Somewhere, Dan is breathing easy and standing on the first tee. With that beautiful smile that made his eyes wrinkle.

Sweet dreams, babe.

PS
Funeral details will be available shortly.

In lieu of flowers or anything else, we encourage people to donate to the foundation Dan established to help other young adult cancer survivors pursue higher education:

National Collegiate Cancer Foundation
PO Box 14190
Silver Spring, MD 20911
http://www.collegiatecancer.org/

WWW

2009-03-11T20:21:00.002-04:00

I remember sitting at the Livestrong conference this summer listening to Lance Armstrong relay a story about work going on around LAF's Global Cancer Campaign. At one point, as he sat with Doug Ulman (LAF CEO) during meetings with top doctors & global dignitaries, Doug leaned over to Lance and said- "This is fun." And Lance told the audience that his response was "It's only fun if we win."

Of course this is Lance Armstrong we're talking about- 7 time champ of the Tour de France. From "Winning isn't the only thing, it's everything" (UCLA Bruins coach Russell "Red" Sanders & Vince Lombardi) to "If you ain't first, you're last" (Ricky Bobby), we are a culture obsessed with winners. And as one who is competitive, I've always gone along with the idea that victory is only achieved when you wipe the field with the other team.

But when Lance said that to the Livestrong audience, I remember thinking that judging victory in cancer solely by "winning" maybe worth another look. After all, many cancer survivors, like Dan, don't see the ultimate victory in being cured. There are 100s of cancers, and to ask for a cure sets a high bar, and one that may be unrealistic in our lifetime. This is not a "one-size-fits -all" solution. Many cancer survivors would be ecstatic if their cancer could be managed as a chronic disease- like diabetes or AIDS. Or if genetic testing could even narrow down the treatment options so that they avoid toxic and crippling treatments as a cruel form of trial & error.

The day I heard Lance speak was about 3 weeks after we'd found out the Dan's cancer had spread. I knew that even then, if Dan's "win" could only be fun if he was cured, than we were in trouble. If he passed on from cancer, we would surely say that he "lost his battle". But as many of you've pointed out, Dan's story isn't a straight win/lose scenario. There are more ways to win than just judging the score.

To prove my point, I went to the dictionary and looked up the word "win". Of course, the first definition is "to finish first", closely followed by "to gain victory". Then it gets more to my (our) point here on this blog... here are more definitions of "win"....

1. "To succeed in reaching (a place, condition) by great effort"- such as a "place" like peace, acceptance or enlightenment... a "condition" like compassion or infectious advocacy

2. "To get by effort, competition or conquest"- such as getting through treatments and still living a normal life or making the effort to help others instead of yourself, and ending up with a foundation that will outlast you

3. "To gain (a prize or fame)"- such as having numerous articles written about your work and many friends to share your story which will continue to pay forward

4. "To gain (favor, love, consent) as by qualities or influence"- favor, love & consent gained in all areas of a life by merely staying true to who you are a person (and who you were before cancer)

5. "To gain the support of"- such as delivering speeches and having the audience listen to the message, whether the audience are high school students, corporate executives or cancer survivors

6. "To persuade to marry"- I don't even need to say anything on this one! but quite true :)

So, I guess the story here fits the definition of winning in more ways than one. And I think Mr. Armstrong will agree as well, especially since he is riding this year to spread the cancer awareness on a global level, and that #8 would be gravy.

Babe- Waeger Will Win. You show us the way, and we will make sure we'll continue the movement. And of course, we WILL have FUN above all else.

Defining Moments

2009-03-09T22:40:00.004-04:00

I am sure that our experiences are causing a lot of people to reflect on their lives and try to imagine what this might be like. How incredibly sad and heartbreaking, not only for Dan, but for me & for us. How unfair it is that someone so young who has done nothing but turn a terrible situation into a source of inspiration for others and opportunity to contribute to the betterment of the world will leave way too soon.

I am painfully of aware of these emotions. So much so that I don't need people to repeat them for me, or even acknowledge them. I don't need anyone to go try to imagine it- trust me, it's not worth the trip.

If I stopped to think what has happened over the past year, I may not be able to move- engaged last March...Dan is hospitalized for an infection but non-cancer related...six weeks later- the cancer spreads. Wedding halted. The fall is spent trying a new treatment-it fails. A new treatment is started, and it's brutal. I lose my job. The treatment improves the cancer situation, but robs Dan of a quality of life. Wedding is on. Ascites. Grave concern. Wedding cancelled. New treatment. No response. No options.

I am no saint. Dan comes pretty close. I've lost my temper, sometimes at him & most of those times, unfairly. There is so much loss here... but I have gained so much.

Although sadness is with me daily, there is an overwhelming feeling of joy and peace. How is that possible? I have enjoyed getting to spend so much time over the past week with Dan's brother Bobby who lives in CA. It has been a privelage to watch one brother care for another, and to spend this time together with the both of them. I've learned more about Dan from the letters & posts that people have written- some things I may have never learned. I have better insight into cancer and specifically, young adults with cancer.

Time comes and goes only in beautiful moments now. I am immensely aware of the fragility of life, and how much that makes things so clear. And not just huge things. Like today, I was thinking how much I like wearing jeans, a t-shirt and flip flops. And how perfectly worn in those flip flops are... and it made me happy.

Of course, it helps that Dan guides me through this, as usual. He is at peace with what is happening, and that makes it much easier for me. I am not afraid. I am not burdened. Although tiring, caring for him is effortless for me. He trusts me to get him through it, and I am honored to do so.

This is not to say that the bottom won't fall out for me- I know it will. But not yet- it's not the right time. My job isn't done yet. And even though it's tough to imagine some days, I believe that this story will not be a tragedy. I know it certainly sounds like one (go ahead- explain it to someone- sounds like a Lifetime movie of the week!). At a time when it would be so easy & understandable to be bitter & angry & desolate... I still believe that there will be a happy ending somewhere down the road. And that brings me peace.

Dan is resting right now. I am sitting with him. I can't imagine any other place I'd rather be...

Remember Me?

2009-03-06T22:02:00.004-05:00

Wow- what a nice and loving response from so many of our extended circle! There is no easy way to deliver news like that, and it's never easy to hear. But I think we're all doing well on both sides. I hope you all feel that way, too.

One of my favorite movies is "Jerry McGuire". There is a scene where Jerry takes Dorothy (it took me 15 minutes to remember Rene Zelweger's name in that movie) to dinner and they start discussing past loves and heartbreaks- the "woe is me" exchange. And then Dorothy interrupts Jerry with the line "Jerry, let's not tell our sad stories."

It would be easy for me to go down that path right now- being sad and angered. But I need to remember our life right now before cancer became our third wheel. I am all for grieving, but not just yet.

So I thought it would be good to write about us as we are in real life. To remember and remind us we are just normal people despite such abnormal circumstances. So I borrowed the Facebook game of listing 25 Things About Me. So here is a joint post from Dan & I...

1. Dan has had 4 dogs- Snickers, Scooter, Shadow & Honey. I only had a guinea pig named Willy who, um, starved to death (it wasn’t really our fault- something was obstructing his throat).

2. Dan went to college at Western Maryland (McDaniel) & grad school at Wagner. I went to Miami (OH) and grad school at some no-name university in Cambridge. We are both extremely close to both our high school and college friends.

3. The first time we went golfing together, I hit it off the tee and right onto the green. Dan was so excited, he planted a little one on me. I think it was the first kiss. Later that day, I holed out from the bunker. My golf game has not reached those heights since.

4. Dan is the youngest of 5, and I am the youngest of 2. The rest of Dan’s siblings all own dogs and so does his dad (they all love dogs!) His immediate family is bigger, but my extended family trumps his.

5. When he was little, Dan wanted to be a taxi driver, and then a greenskeeper. I wanted to be a doctor or scientist. I even asked for & received a microscope for Christmas one year. My career in medicine didn’t make it past college chemistry.

6. Dan has a weakness for golf shirts. I have a weakness for sweaters.

7. Dan would rather be a Superbowl-winning quarterback than win the Master’s. I’d rather hit a grand slam home run in the bottom of the 9th, game seven of the World Series with the bases loaded.

8. Dan doesn’t drink coffee. I drink coffee every day, but have never made it myself. Preferred brew: hands down Dunkin Donuts.

9. Dan’s favorite meal is Grannie’s No Peak Chicken and his favorite candy is peanut butter M&M’s. But he doesn’t really like sweets. My favorite meal is just mashed potatoes and my favorite candy is Reese’s Peanut Butter Cups. I inherited a bad sugar tooth from my mom.

10. When Dan went to my parents house to ask for permission to ask me to marry him, he described that it was completely silent after he broke the news. Until my sister-in-law said “See, I told you he wasn’t coming to ask for money”. My dad followed with “Ok Dan, let me show you where the lawnmower is.” I would have like to seen that!

11. Our go-to favorite take-out is Guapo’s (Mexican) in Bethesda. It helps that it’s right across the street. We have no problem ordering from there 3 times a week.

12. I am more reckless on a jet ski than Dan. He is a better driver- I even failed my driver's license test when I was 16.

13. For two people don’t live in Boston, we’ve been to Fenway twice together. Dan hated the Fenway Franks.

14. Our favorite TV show is “The Biggest Loser”. Dan is also very accepting of Bravo’s reality TV lineup. His favorite housewife is NeNe from Atlanta. I can’t pick a favorite. Dan also claims his favorite TV show growing up was ALF. I can’t top that one.

15. Last summer we played hooky from work and went to the waterpark all afternoon. Not only were we the oldest ones there by 10-15 years, but we were the last ones to leave at dusk.

16. We’ve both been on championship teams in the past year as part of Social Sports of Bethesda leagues. Dan- softball. Me- football. I definitely take it more seriously than Dan.

17. Dan’s worst habit is picking his fingernails. Mine is never screwing the lids on tightly. Habitually losing my keys/wallet/parking pass is a close second.

18. We both agree that if we would have any super power, it would be to be invisible. If he were to be a super hero, Dan would be Batman. I'd want to be part of the Wonder Twins.

19. Dan has a torn ACL that has never been repaired. The worst injury I ever suffered was a dislocated finger last year.

20. Dan has to have the toilet paper roll dispense from the top. I wasn’t aware of this until now.

21. We both had Pound Puppies when we were little, though Dan was obsessed with them. He even insisted on taking them in a carrier on a plane ride for a family vacation and has pictures of it.

22. We’ve rarely faught. Mostly because Dan doesn’t get angry and can't be baited. The only time I’ve ever been really mad at him was when he convinced me to jump in the river with him after we went white water rafting in Colorado. I’ve never felt anything so cold, and I braved Chicago and Boston winters.

23. We were both very good soccer players in our primes, and we both played defense.

24. The first night we had dinner, neither one of us wanted to go home after we finished. So we went to a park to play Frisbee. Dan sent me back to that same park the day we got engaged along a 5 hour scavenger hunt.

25. We both prefer dive bars to wine bars, dueling pianos & karoake to jazz, Miller Lite to anything else, Christmas over any other holiday... we don't mind dressing up in costumes or silly hats, spending lazy afternoons on the couch playing boardgames or never getting around to hanging pictures on the wall... we like to think of ourselves as two peas in a pod.

Dear Blog Family...

2009-03-05T09:02:00.003-05:00

This is a blog entry I never wanted to write. But since we’ve made a point of publicly sharing our story in the hopes of educating others and connecting to those in similar situations, we don’t see why we should not share the sad news, too.

As your read in his post last week, Dan became increasingly short of breath. Recognizing that this was not a good sign, we arranged for a scan and doctor’s meeting last Friday. Dan and I chose to go alone this time, as we sensed that the news would not be good, and that certain things needed to be discussed in private. The scans confirmed what we expected- the disease is progressing faster than we could keep up with it. His liver seems to be getting the worst of it, though his lungs are in trouble, too. Though there are still some treatment options available, Dan’s body can’t take them.

As a family, we have spent the last week processing this news and putting a care plan in place for Dan. This doesn’t leave much time for connecting with people individually to tell them the news, so we’ve tried to put family first. I think that it will be tough for people to hear that Dan will succumb to cancer as he beat it back so many times before, setting high expectations for himself. We’ve all looked to Dan to comfort us and give us hope, which he does with his incredible “Will-Win” attitude. And he did win- for almost four years, with a disease that should probably have taken him within months.

I think I speak on behalf of Dan’s family, friends, doctors, nurses, caregivers, fellow cancer advocates and pretty much anyone that was touched by his story when I say that we are all incredibly proud of him and the way that he lives his life to benefit others. Through the National Collegiate Cancer Foundation, we know that his legacy will live long after he leaves us. It is really his gift to us, and we will do our best to continue his efforts to aid young adult cancer survivors.

Dan will be cared for at home at this time. We are not accepting visitors unless Dan requests them (though an exception might be made for Lance or Phil). Please feel free to send a card or email, but we don’t need any food or anything else at the moment. We are fortunate to be supported by two very loving families who are helping us both through this time. I will reach out if we do need anything.

I will continue to update the blog, though more with musings and observations than with medical details to protect our privacy. The blog remains our preferred method of reaching out to people. However, I don’t know that Dan will write anything further. When I asked him if he wanted to, he said "I said everything I needed to say as I went though life, and that if people weren’t listening… then they should pay more attention next time." Well said Dan.

On a final note today, I just want to say that I couldn’t love Dan anymore than I do at this moment, and consider it a blessing to help him through this time. I am ok, and my main concern is being with Dan. But I’ll write more about me later.

Twitter

2009-02-26T20:25:00.002-05:00

We try to keep up with the Livestrong Twitters as much as possible- both Doug Ulman's & Lance Armstrong's (Hey Devon- Dan wants to know where yours is!). I think it's pretty cool/amazing/spot on that Lance completes his rides, and then goes straight to advocating and meeting with cancer survivors.

Thanks to the Twitter faithful who let us know that Dan got a shout out on Lance's Twitter tonight. It was getting kinda heavy in here, and it was good to see the message

Go Dan Go!! http://waegerwillwin.blogsp.... You are in our thoughts and prayers!about 1 hour ago from web

http://twitter.com/lancearmstrong

One Day at a Time

2009-02-25T21:07:00.005-05:00

On the plus side- Dan's stitches appear to be healing. After a near-breaking point incident last Saturday and the trip to emergency room, we are happy to say that we haven't had any more problems with the drain- not even one little leak. It's like the great powers above knew it was time for the drain issues to cease. Dan is scheduled to have the stitches removed next week. For the most part, it has become part of the routine.

On the downside, Dan is feeling more run down and short of breath... new issues to deal with, and ones that are a real challenge. He started with the full dose of the new chemo pill last night, and hopefully it will kick in and beat back these symptoms.

Thanks for all your cards, emails & posts. They give us a great boost. It can be tough to get back to everyone, as we're very focused on getting through the days. But know we read & re-read them all. We're getting the hang of coordinating rides for Dan and balancing my work schedule, but it's still not easy. Although it's a little easier now that Idol is down to the Round of 36, Tiger is back (and on live TV on a Wednsesday), and even Phil managed not to choke!

Dan's sister Cindy is visiting from Hawaii this week, and it's great to have her & little Caroline visiting with Dan during the days. We're getting our families together this weekend, which will be nice for everyone. Plus we get to meet Dan's dad's new puppy!

So just pray that things get better- one day at a time.

Drain - O

2009-02-23T20:16:00.003-05:00

For the most part, the drain has been the source of our frustration the past few days. Not the drain themselves, but the stitches were leaking last week. So on Thursday, I went to Hopkins to have the one area stitched better with 2 new stitches. Unfortunately, two days later we had one of the toughest days yet.

On Saturday AM, I woke coughing and throwing up a little. I think all the pressure on my abdomen pushed the stitches apart and my abdomen pretty much turned into a leaky faucet. My dressing was dripping with fluid every 30 minutes. Having to repeatedly change the dresssing soon became very annoying and frustrating for Meg and I. By 11pm that night, we finally got worried because it wasn't stopping and so we went to the Emergency Room by our house. Fun. Fun. Fun.

It actually wasn't too bad, but we were there from about 11pm to 1:30am. Knowing that my situation is complicated, we were very weary of who would be attempting to fix the problem. Well, so was the ER doctor and so we all agreed to actually do nothing and hope that laying down flat over the next 24 hours would alleviate some of the problems.

When we got home, we put on probably the 10th bandage of the day on. We put towels on the bed and around my stomach. We took every precaution necessary and I was ordered not to move. Low and behold - it worked (knock on wood). It's been dry so far since that incident. I can't explain it, but let's hope it stays that way. I actually went to Hopkins today to get it checked again and they agreed to do nothing for now. I'm just nervous the next big cough or nausea reaction might rupture the stitches. Let's pray it doesn't and everything heals so we can move on!

The Giving Tree

2009-02-20T12:35:00.000-05:00

I told Dan recently that I feel like he is living the “The Giving Tree”. You remember the Shel Silverstein story where a tree and a boy become best friends, and the tree happily obliges the boy’s requests. He gives the boy shade, apples to eat & his branches to a build a house. The boy gets older, and just keeps taking until he finally leaves the tree a stump after he cuts it down to make a boat. In the end, even after the boy had long sailed away, the tree provides him (now an old man) a place to rest.

There are two ways to look at the story- from the tree who’s first inclination is to give of itself or the boy who’s only inclination is to take. Relax- I am not trying to draw a comparison between the boy & cancer hacking away at Dan… so please don’t be alarmed. I identify with the story as it relates to a person’s (in this case- a tree’s) demeanor & will to keep giving & living selflessly, no matter what is taken from them. Where some would see the tree becoming smaller & smaller at the hands of the selfish boy, I always took more from the story’s other message. To me, I always remember that even though the tree may have sacrificed some parts of itself, it could still find something to give, and still kept living.

Like the tree, Dan has sacrificed some good physical parts of himself over the past few months. I have been amazed to witness how much the human body can take, and just marvel at what he can continue to do mentally. Take Dan last week- what would you do if your stomach literally filled up with fluid, smushing your insides and make it hard to eat or even sit comfortably? If all that he had been through wasn’t enough, I really feared that this new hurdle would be his undoing. Most people would just shut it down. But Dan insists on getting a tube put in him so that he can feel better to get back to work. Granted, sometimes his ambition is slowed by the reality of the situation. But the will to live the same way he always has, with the same attitude… is part of his DNA. Just like that tree was “rooted” in giving and living no matter what was the boy took from it. Dan is just like that darn tree! You can strip everything else away, but what remains is still the best part. I mean, would you still insist on doing the dishes even though you have the best excuse to get out of it?

A weekend in the drain.....

2009-02-17T23:28:00.000-05:00

I wish I could say Meg and I had a nice relaxing weekend, enjoying each other’s company, and celebrating Valentine’s Day. Instead, our lovely Saturday was actually filled with Meghan and I learning to use the drain for the first time. The weekend was tough. I think we all thought, myself included, that once the permanent drain was put in place our lives would return back to normal or at least back to prior fluid accumulation. Unfortunately, that is not reality.

For the most part, my abdomen and place of incision was sore all weekend. More sore than I had anticipated at least. I have my pain meds to relieve the discomfort, but the pain meds ended up making me really drowsy and just wanting to lie on the couch all weekend.

So we drained the fluid on Saturday and this morning (Tuesday AM). We drained 350 ml (or 1/3 of a liter) each time. Since it is only 1/3 a liter, it is actually a good thing. But draining it at home still makes it sore for a few hours. I just think having the fluid going in and out of your body is not a normal bodily process and either the process of draining it or just the fluid itself makes me nauseas at times.

Also, this morning we noticed one of the stitch holes was leaking. Not a lot, but enough to soak through all the gauze. I called my nurse and we are just going to monitor it for now. The stitch is supposed to heal on its own and maybe my cough or the way I slept put pressure on it more than usual. We will just have to change the dressing more frequent and if it is still leaking later this week I’m going to call the surgeon and see if I need to go in for them to check it out.

SOOOO - Happy Valentines Day to us! Meghan has been great through all this and I cannot thank her enough for all her love and support. I finally started my chemo drug on Monday (a pill 2x a day). I’m hoping and praying for good results!

Drained.....

2009-02-12T23:26:00.004-05:00

That title is referring to both physically and mentally....

Physically - everything went well yesterday. The drain is in place! I thought the procedure was going to be the same as the temporary one, but was actually quite different. During the temp one, they just numb the area and I'm wide awake. Yesterday, however, they used sedation through my iv line so I was totally asleep (which is probably for the better). They actually inserted the tube closer to my belly button, but instead of coming right back out the same spot they run the tubing underneath your skin for 3-4 inches to keep it more stable and thus the drain comes out closer to my side abdomen. Trust me - I feel nothing. Let me rephrase that b/c I am actually really sore and hurting quite a bit from the procedure. I'm poppin the pain meds every 4 hours and it's still fairly sore, especially when I cough. But in the long run, I won't feel anything.

Mentally - I'm drained as well. It's been a long three weeks with this abdominal fluid. I'm glad I finally have some relief. Meghan said I was like a new person last night, but I think part of it was being on so many meds b/c today I'm just exhausted and sore.

The toughest thing mentally has been facing some very difficult questions and not to mention trying to keep a clear head with respect to researching and find the best treatment option at the same time. I've said this before, but I'm in a very lucky position to work for a great organization in the National Coalition for Cancer Survivorship. Over the past week, we've reached out to numerous doctors and leaders in the field for lung cancer. First and foremost, I have to thank my boss Ellen for leading the charge. She is a 3x, thirty-five year, cancer survivor with the heart of a mother but the fight of a lion.

For those that have ever had found themselves in the midst of a medical nightmare - whether that is fighting insurance companies or a doctor's bill, finding the right doctor, or just wanting better medical care - than you have a small glimpse of how overwhelming it can be. Making critical decisions, or in my case life altering decisions, requires putting in a lot of time and effort. Furthermore, not feeling well physically and being pushed to the limit mentally the past two weeks makes the task even more challenging.

However, working for NCCS over the past 3 years has prepared me for these situations. I've become educated and most importantly empowered!!! At the same time, when you do feel stretched thin, it is always nice to have others take charge for you.

So - last Wednesday, my doctor had recommended another chemo drug called Irinotecan. It's just another drug approved for lung cancer and hopefully would produce good results. However, it is very toxic (equivalent in toxicity to the regimen I have been on the past 4 months). Given my body and the weakness which has resulted from toxicity, I knew I needed a break but at the same time needed to stay on some sort of treatment given the progression of my cancer.

Last Friday, Ellen and I talked to the doctor in Colorado. He was the doctor Meg and I visited back in the summer when we were at a previous juncture in treatment. He suggested taking an oral drug called Sorafenib. Sorafenib is an oral pill taken 2x a day and a lot less toxic than irinotecan. All of you guys know my strength and attitude and if I needed to suck it up and take Irinotecan than I would. But honestly that would be a lot for me to endure right now. Thanks to Ellen, other co-workers, and partners in the pharmaceutical industry, we received wonderful advice from top doctors across the country regarding this treatment and possible clinical trials from Georgetown and Maryland to Dana Farber in Boston. Unfortunately, given the fact that I've taken 4-5 different chemotherapy agents over the past 3 years I am excluded from entering into nearly 90% of the trials available. (There are still 1 or 2 we are looking into - but if it fits that will be another one hopefully up our sleeve when we need it as a decision with Sorafenib has been made).

Sorafenib does have some side effects like rashes on hands/feet, diarrhea, and fatigue. It just will give my body time to recover, gain some weight, etc. for when I need to go on Irinotecan or whatever. However, I'm not ruling out Sorafenib will work or at least will work for quite some time. I have to hope it will work as long as possible which would be awesome and amazing so I'm crossing my fingers. However, realistically any extra amount of time it buys us would be great!!!

I got a script for Sorafenib from my doctor yesterday. Since it is only approved for Kidney and Liver cancer, it's going to take a few days for the insurance to clear. I've been given a few days supply to get started which I'll probably begin on Sunday or Monday just to give my body 2-3 days to heal from yesterday's procedure. SO let's pray there will not be too much of a hassle from my insurance and let's pray that it works! The convenience of just taking a pill and not dealing with a hospital, and iv lines, and blood drawn, etc. will be nice. Last but not least, even though they say the side effects will be minimal for most people - let's hope that this one time I'm most people!

Say What You Need To Say

2009-02-11T14:00:00.002-05:00

I am sure that Dan will update everyone with respect to next steps with respect to treatment over the next day or so. It took awhile to sort out, but he will get the drain put in tomorrow to help with the fluid retention. And yes, he kinda looked like the pregnant man.

We also don’t want people to freak out if we don’t immediately post a medical update. While we use this blog as our main form of communication, we also need a little time to digest things and let our immediate families know what is going on. Calls become really tough to handle… think of it- Dan has his parents and 4 siblings, plus my parents and my brother & his family, so if we were to even spend a half on hour on the phone with each, that is 4 hours of talk time! So don’t feel bad or worried if you don’t hear from us directly… we try to keep up, but I guess that is the downside of having so many well-wishers… not enough time to connect with everyone.

A very timely article was published in the USA Today yesterday about how to talk to people with cancer & about what not to say. I know many people have stated that it’s hard for them to post on our blog because they don’t want to say the wrong thing, which we can understand. But also realize that we check the blog quite often, and for us, it’s nice because we get to read people’s thoughts without having to directly respond. I know, it’s a bit selfish! And I also think that your comments bring comfort to those who don’t see Dan very often. I know it’s really hard for family & friends to be far away & feel helpless, so I have to imagine that reading everyone’s kind words & encouraging messages gives them a boost as well.

OK, enough pontificating. Here is the link to the article

http://www.usatoday.com/news/health/2009-02-08-cancer-words_N.htm

Dan is actually quoted in the sidebar of the article. I like what he says about congratulating people when they tell you they’re a cancer survivor. I was really surprised by this response when we went to the LiveStrong summit in OH this past summer. Cancer survivors, both those in & after treatment, need to be congratulated for enduring what they do, both mentally & physically.

I would also like to add my own thoughts about what not to say.

1. If someone tells you that they or someone they love has cancer, please don’t ask if they are optimistic. This happened to my friend when she was diagnosed with colon cancer. What was she supposed to say- “No, they’ve written me off”?

2. Many people ask me if I need a break. Please don’t ask me that. Yes, these are tough times, but if I needed a break spending time with Dan, my fiancé, something would really be wrong. I liked watching 5 hours of tv before I met Dan, so I feel I’ve been in training for some down time. Plus, my break is going to work everyday, so I get up & out & moving every day.

3. Please don’t tell us that you’re now thankful for what you have after hearing about Dan or that you’ve realized you don’t have it so bad compared to what we are dealing with. This is a backhanded way of saying we don’t have much or we have a really bad life. Neither one of us feel this way.

Now, if you’ve said some of things, it’s not something that we dwell on AT ALL. We know everyone has good intentions. But it’s just things to keep in mind the next time a friend or co-worker might be dealing with cancer. I think we’ve said it a 1,000 times, but the best thing for us to be as normal as possible.

I recently had to explain what was happening to my new boss. I think he handled it very well. He didn't say much other than to express his concern and support. He didn't put me on the spot with respect to a lot of medical questions. He let me say what I needed to say and then we just got back to business. All in all, A+ for him. And, I actually held it together!

The Pregnant Man

2009-02-09T14:50:00.002-05:00

I don't mean to make a joke of my situation b/c my stomach has been very uncomfortable and even painful at times, but lately I've felt like the pregnant man.

To start from the beginning, I have been bloated for nearly two to three weeks now. My abdomen was extended and felt very uncomfortable. I finally went into the doctors on Friday, January 30th. When they did the tests, my CT scan revealed the bloated feeling is actually a collection of fluid in my stomach. It doesn't really matter what the fluid is, but the fluid is caused by the cancer.

The fluid is called ascites and pretty much your only option to have the fluid go away is to have it drained. So they were prepared and drained it immediately. I went up to my nurse's station and a guy came in with an ultrasound. They used the ultrasound to guide a needle to numb the area. After it is numb, they insert a drain or small tube like an IV line. They took 1.5 liters of fluid out and the draining part only took about 10 minutes. It wasn't too painful, but just uncomfortable. But as soon as the fluid is drained, you can feel the pressure leaving your abdomen almost immediately.

Unfortunately, there is no long term solution to the fluid. At that time, they said my abdomen would most likely keep accumulating fluid at a rate of every week, to 2 weeks, to 3 weeks. Well, just two days later it re-accumulated which is not good. On Wednesday of last week (Feb. 4th), I went back in for the 2nd time and they drained another 1.5 liters of fluid.

Finally, with respect to the rest of my cancer. We did not receive the best of news on Wednesday as well. The disappointing news was that there is growth in the lymphatic area around my lung. There is nothing measurable, but as my doctor described it was a thickening of the mass or lining around the edge of the lung. While it's not measurable, it does represent disease progression and my doctor is seriously concerned. It is more concerning than the fluid. As bad as the fluid sounds, that will just be more annoying. The disease progression is not ideal and having gone through 4-5 treatments already, our options are limited.

With that being said, my doctor recommended one therapy approach which he wants to start immediately (which would be next week). I've asked to hold off a few days and reach out to the top lung cancer experts in the country which we did back in the summer. Thanks to my job, I have the luxury of very good contacts. We are waiting to hear back on their opinion and whether or not there is a viable clinical trial to enter right now. If I decide on a clinical trial - I would probably start in 3 weeks given all the paperwork/insurance stuff that is involved. However, a decision on all this will probably be made by the end of this week as we need to act fast.

Also, given the rate of the fluid coming back, I had to go back in today to have it drained again. While they only got 1 liter this time, I can assure you the pain and discomfort is nothing I wish upon anyone. They are finally going to insert a permanent drain this Thursday, which I will have to manage myself. It just means a small little port or IV line will be stitched to the side of my stomach and every 2 days or so I will have to release the valve on the IV line into a bottle. I will not need to carry around a bag or bottle all day. To my understanding, I'll probably just have a foot or so of IV line or small tubing taped to my side. When I start to feel uncomfortable, I will open the valve into small bottle at home when needed.

SOOOOO - I think I gave everyone the full update. We will let you know when a decision on treatment is made. We are staying positive and strong and all of your support gives us even more strength! Thank you!!!!!

P.S. The Smoothie King put a sign on their door saying they don't agree with the management's decision on their towing policy. Hahaha.

Fighting Words

2009-02-05T19:58:00.005-05:00

Many of you know that we received discouraging information from the doctor this week. I am sure we will write more about it soon, but the short story is that the doctor is very, very concerned about Dan's latest scan. A new treatment will begin early next week. So we've been getting geared up for it, but taking some time to ourselves. Forgive me if I don't let you in on all the details- we are still sorting them out. But we ask that you take those prayers up a notch.

Anyways, I had one of the worst meltdowns today, which ended up being a good kick in the behind. I went to Smoothie King (SK) to get Dan his usual but made the last minute decision to run and get a cup of coffee down the block before heading into SK. Well, I must have parked in that parking lot 100 times and never noticed that there was a sign that said that you will get towed if you walk off the lot & didn't patronize the stores in the little mall where SK is located. You can probably see what is coming next...

So there I was... walking toward the Smoothie King when I noticed my car was gone. After realizing what had happened, I barely made it into SK before beginning to sob. The guy behind the counter recognized me and thankfully, someone offered his cell phone for me to call the tow company. I apologized for being such a blubbering mess, and just kept saying that all I wanted was to bring a smoothie to my fiance who has cancer. Plus, I thought it was bogus that I got towed after 3 minutes, especially since I was going to Smoothie King all along! Anyways, I called the tow company and asked if they could please just bring me the car- I'd even pay double. I explained through my sobs that I needed the car in case we could get into Hopkins today for a procedure. The first time I called, a woman hung up on me. The next time, the manager told me that if I had a medical emergency, I should call an ambulance. So there I am with no phone or purse, no coat in the freezing cold, sobbing to total strangers in Smoothie King... wondering what had become of my life. At least the guy gave me a free smoothie.

When I finally came home, I was just totally beaten down. I just didn't think I could sink any lower in life. How could people be so cruel- I know that towing companies are pretty much the lowest form of humanity. And I'm sure they must get a lot of sob stories, but I couldn't believe that they hung up on me (twice!) and told me to call an ambulance. All for $158 dollars. I was dealing with people without souls. I eventually called back once I had calmed down because I still didn't know where my car was, only where to take my medical emergency. I tried to explain the situation. Again- same response. And this time- the guy told me that "we all have sh*tty lives". Well, that was the last straw.

I told Dan to call them back and asked if they accepted cash. And then proceeded to count out $158 in coins from the collection I'd been building for the past 3 years. If I was going to be treated like crap and made to waste 3 hours of my day dealing with asses, than they were going to have to feel some pain, too. Dan got in on it, and we decided that even worse than counting coins would be counting sticky coins. So after we counted out $158 worth of pennies, nickels, dimes, and quarters, we put them in strainer and poured Diet Coke all over them. Yes, I admit, this was pretty immature, but when you're down, and the urge to push back... it's tough to resist.

So off we went to Rockville, halfway excited that we'd get under the skin of the towing jerks, halfway excited for a distraction from and afternoon of heavy discussions. When we arrived in what can only be described as a dirty hole with equally troll-like characters, I shoved the bag of coins through the window. The manager immediately came back that he wasn't going to accept coins. Dan pointed out that the signs said that they accept cash, and that we had called to confirm this fact. The guy raised his voice, setting me off in a barage of things that can't be written on this blog since my parents read it. He even turned on a video camera on us - I guess he wanted to document a young woman and a bald, pale cancer patient in case we were going to leap through a glass window and attack 2 men at least 3 times our size. Anyways, Dan calmly kept asking for their written payment policy, again pointing to the sign saying that cash was accepted. The manager, conveniently positioned behind the camera, made a few rude gestures. Clearly, we were at an impass. After we refused to leave, the manager said he would call the police. Hah- I was like fine by us!

So we took our spot on the bench, waiting for the po-po. Note that we were actually pretty civilized (even me, after my initial verbal jabs). Just as I was saying we should pay & leave, b/c the guy was such a jerk, the police came- all 3 of them with guns loaded!!! We explained the situation to them from our point of view, and they went to interview the manager. They came back, asking us if we would go to a bank or pay by another method. I innocently said that my purse was in the car that had been towed, and that we didn't have a bank nearby. Dan calmly asked what was wrong with paying in coins, while it may not be technically "cash" it is still US Currency and a form of payment. The police officers seemed sympathetic after hearing the entire backstory, and you could tell they saw we were just pretty normal people who had been pushed a little too far by people who use predatory measures to make a buck. So back they went to the manager.

Somehow, the guy figured he could be rude to the police when they asked if he would consider taking the coins. He said that the police couldn't tell him how to run his establishment, even throwing a coin at their feet. Well, that was all the police needed to make the guy go in the back and count the coins. The manager was livid, but he painted himself in a corner. We just chuckled to ourselves watching the 3 police officers smirking at the situation, clearly enjoying that they were making the guy pay for being a jerk. At one point, the senior officer came out and in a roundabout way, asked us if we had always planned on paying in coins. I explained that the only reason I decided to pay in change was to show to someone that he can't take advantage of a situation & use his position to make other people feel lowly and helpless. The police officer said that he was backing us up- because he didn't like the guy (or G&G Towing) either.

After about an hour, the manager came back out & gave in. My car was free! And the guy was made to look pretty foolish about calling the police, and more like just a stupid bully who takes advantage of people. Oh, and while we were waiting, we witnessed another man come in to discuss an estimate to fix his car which had been hit by one of the company's trucks. The manager refused to hand over his insurance information, and would only offer the man less than half of the body shop estimate. The worst part was that English wasn't the man's first language and it was clear that the manager was trying to take advantage of him. Good timing- the police took all the information with respect to the incident, and the man will get his car fixed.

You may be reading this thinking that we are a little crazy. I may have recovered from the car towing and the Smoothie King waterworks, but I wasn't going to be treated so poorly and without an ounce of decency. If you ever gotten your car towed, you know how unpleasant the experience is, and how creepy the people are that run the operations. You have no power and no leverage. And we were coming off a few days where we were feeling the exact same things in life. So forgive us if we wanted to take out our anger on something and fight back a little. Dan & I make a pretty good team, and it was good to be reminded of that... and take down the bad guy.

You mess with the bull, you get the horns.

PS- Dan says that his favorite part of the whole story is that, as we were parking the car to go to dinner, I turned to him & said in all seriousness "You know, I'm not going to mess with towaway zones, but I'll still roll the dice when it comes to not putting any money in the parking meter."

Pay it Forward

2009-01-29T21:50:00.003-05:00

In the span of just a couple of days, we've heard from several of the scholarship recipients from NCCF (and yes, we are working on the "Thank You" letter for 2008). We even got a picture of one of them proudly holding his check. And last night, Dan and I talked to a two-time awardee, and hope to meet him in a few weeks when he travels to DC. We've made an unlikely connection to people we never would have met if not for cancer- a PHD candidate in CA, a young man with a heartbreaking childhood who recently turned the corner mentally and is excited about his modern dance classes, a young man who wants nothing more than work on airplane engines.

I admit- I had gotten to the point that I didn't think that the awards would make much of a difference to these people considering the amount of money they owed in medical bills and tuition expenses. I was wrong on so many levels. It's not so much the money as it is the fact that some of these people are chosen to receive something based on their personal stories. Many of these young adults aren't A students or homecoming kings. They may have been the people that were passed over in school. But to us, they are A players in the game of life. And although the circumstances under which we've connected to them are awful, they become a part of our extended team and make us want to be better people.

So after all the joy of hearing from the scholarship winners, I got a totally random email today from someone I've never met. It was just a reminder to me to keep moving forward through the tough days. And how lucky I am that people reach out to me... because the common thread in this journey tying us total strangers together is none of us wants to go it alone.

"My 31 year old brother was diagnosed with stage IV lung cancer on Dec. 30th. Much like your story, it came as a total and utter shock. My first internet search on the subject was a nightmare. My husband, who is a Pharm D student, warned me not to look at the statistics and sad stories; he said to stay positive and search for success stories. Given my brother's age and fitness level, much like Dan, he did not fit in with the typical lung cancer patient profile so I started looking for younger people with this disease that were already headed down the path we were about to take. Dan was the first person I found. I have since found and connected with some other lung cancer survivors and/or their family members. It has been so wonderful to finally feel like we are not alone."

Over 100 Billion hamburgers served...

2009-01-27T04:32:00.002-05:00

As I’ve said before, the week following chemotherapy I struggle to put down enough calories even with the Jack LaLanne juicer or ordering “The Hulk” at the Smoothie King. Nothing looks appealing, not even some of my healthy favorites. So when you have a green light in life to eat anything you want, you might as well take advantage of it.

Over the past week, I’ve stopped by McDonald’s twice for dinner. Both times, I ordered my favorite, Value Meal #1 - the Big Mac. What is it that makes the Big Mac so special? Is it the sauce? Does the cool song bring you in?

"Two all beef patties, special sauce, lettuce, cheese, pickles, onions on a sesame seed bun…."

Is there even another burger in the “fast food” community that can even compete? Some people like their coffee and others their fries, but for me going to McDonald’s it is all about the Big Mac.

Going 2x in a week is probably enough to satisfy my fast food cravings for a year, but I’m a huge fan, especially of the sauce, and what better way to scarf down probably more than double my calorie count for the day. The thing that strikes me the most about McDonald’s, however, is the smell. It is just unmistakable. The overriding stench seems to last forever too, following you wherever you go. Which reminds me, I need to go take out the trash….

Change of Scenery

2009-01-23T11:12:00.000-05:00

So I started a new job last week. All in all, it’s going pretty well other than the fact that my commute is now 40-45 minutes versus 15-20 minutes at my old job. It’s a little weird to enter into an environment where no one has any association of me to cancer. I am just a “normal” co-worker, wanting to do well, find someone to eat lunch with and learn how to connect to the printer. I almost feel dishonest keeping it to myself for now, because cancer has become such a big part of our lives and definitely influence my priorities. But there is something nice about feeling normal- just as Dan did when he played on the softball team and no one knew he had cancer. People just ask me how I am doing and questions about our wedding or where we live… normal conversation.

This is also a time where I wish I could pull out the old cancer handbook and turn to the chapter “When to Tell Your Boss Your Fiancé Has Cancer & You’d Like to Go to Treatments with Him.” At my old job, I had the benefit of an established track record by the time I met Dan and asked for a flexible schedule on his treatment days. However, after moving through 4 bosses in rapid succession, my luck eventually ran out.

My last position left me reporting into someone my own age who wasn’t really equipped to know how to manage the situation. I should clarify- I didn’t need much management, other than the peace of mind that when I was going to be out of the office on the afternoon of a treatment, I wouldn’t be expected to immediately respond to an email. My last “supervisor” just ignored the whole situation, and continued to send a million emails or requests and even tried to schedule meetings on occasion. As someone who always delivers at work, slept with her Blackberry & could pull 14 hour days, I knew I would do whatever was asked x10 (of course) though it left with me a lot of anxiety. On top of that, when Dan was in the hospital last spring for an un-related virus, I had all my work pulled from me the week I returned.

That gem of a response left me so fearful that I never told anyone when Dan’s cancer spread back in July. I didn’t want more work taken from me and I didn’t want to seem like I couldn’t contribute at the same levels as everyone else. So I spent the last 6 months there praying I could dodge a major incident at work that might conflict with a treatment day. It was mentally exhausting. And on my last day, I pretty much lost it when I was called in & given the news that I was being let go. Not because I was so upset that I lost my job, but because it was the end of a long & difficult situation. That, and it was also the day Dan’s hair started falling out and I had to go home and shave his head! Good timing, huh?

I didn’t (and don’t) expect to be treated differently at work because Dan had cancer. In fact, I needed to work to give my life structure and have a sense of accomplishment. I didn’t want to keep my job because someone felt sorry for me, but I also didn’t want to lose work because of the situation. I don’t know when I will let my current employer know what is going, though it probably won’t be long (especially since people are curious as to why we aren’t taking a honeymoon after the wedding, and someone asked if I was pregnant!). I can’t bear the thought of going to work and having to sit there while Dan is at Hopkins. After all, he never gets to take a break, so it feels unfair for me to take a treatment or two off.

I am not writing this to complain (ok, maybe a little), but rather to remind people that there is no way of knowing the right things to do if you find yourself faced with a family medical issue. If you do happen to know a colleague or a direct report dealing with a similar issue, I hope you’ll give them a break. I hope you’ll make every effort to let that person spend time with family. It makes a huge difference when people sit with us during chemo, and it is invaluable to me to be with Dan during treatment. I hope you’ll ask them how they are doing, and mean it. Some things are more important than meeting earnings, churning out another powerpoint deck or getting ahead.

Healthcare in America

2009-01-20T23:37:00.000-05:00

With the extra 3 million people in town for the inauguration, Meg and I had 4 day weekend. Listening to Obama's speech today, however, I couldn't help but think about the challenges he faces in the next 4 years. Beyond the economic crisis and foreign affairs, what's going to happen to our healthcare system? I think I'm too tired tonight to get into a larger debate of what he stands for and what I want to see happen. (You can read about his healthcare policy here - http://www.barackobama.com/issues/healthcare/)

I just hope for cancer survivors everywhere - the uninsured and newly diagnosed or the underinsured who have to worry about the out of pocket expenses because of costly chemotherapy treatments or lack of coverage on what basic things that we take for granted - that the new administration's healthcare policy will be to the benefit of all cancer survivors. Going through a cancer diagnosis and all that it entails is enough to worry about it. It is stressful, taxing, and mentally challgenging. I am very lucky in that I am blessed with wonderful health insurance and couldn't imagine the added pressure of having to worry about finances.

Tonight, I just have one message and that is to educate and urge my friends to read the fine print of their employers health coverage, to investigate their options, and to pay for the best medical care possible. The incremental amount from each level of health coverage is usually not that much and very affordable. You never know when you're going to need it and for those that say, "It won't happen to me" - well it happened to me.

Are You Mad?

2009-01-15T22:44:00.002-05:00

This was a question posed to me last weekend by a friend of mine. Initially, it took me by surprise. For the most part, people's questions around cancer pretty much stop at "How is Dan feeling?" (this week, not so good). And if you're reading this, chances are you are generally met with a positive attitude, and a slightly glossed over version of our life. The real tough questions or conversations tend to happen only between just Dan & I. Even if we told people, they'd still have no idea what really go through- only we do.

But I am sure this is a question many people ponder so I'll give you an honest answer. I think I am probably more mad than I realize. How can we not all be at this situation? However, if I stopped to be mad, I might never get anything done! And the way I look at it, there is something about being mad that lights a fire under people- hence the term "fired up". You just have to find a way to channel it into something positive... actionable. I'd take being mad over being depressed or morose any day. I can't do anything to change the course that has brought us here, and in many ways, I wouldn't want to change a thing. All I can do is take what I've learned & experienced and make something positive out of it.

Although, I do think anger is closely followed by exasperation. As in- if you had any clue what was going on in my life, you wouldn't (insert one of the following).... give me a parking ticket, give me bad customer service, let me go from my job....

But that is the darndest thing about cancer, and how we try to look at the overall experience. Life still keeps moving whether you like it or not, and you have to make the choice to move along with it, anger & all.