Monday, August 27, 2012

Why People Wear the Yellow Bracelets

Given recent events, I think it's important to remind people why Livestrong means so much to the cancer community. It's not about blindly idolizing a person or wearing a bracelet...

The Livestrong Manifesto

We believe in life.

Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.

We kick in the moment you're diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. Your healthcare team. And the people you live with, work with, cry and laugh with.
This is no time to pull punches.
You're in the fight of your life.

We're about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that's what it takes.
We're about preventing cancer. Finding it early. Getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It's your life. You will have it your way.

We're about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It's knowing your rights.
It's your life.
Take no prisoners.

We're about the fight.
We're your advocate before policymakers. Your champion within the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.


Friday, March 16, 2012

Three Years

It's unimaginable that Dan has been gone three years. Some days it seems like forever. And other days it seems like he is just away for the weekend.

Whoever says time heals all was probably just trying to think of something nice to say. If you've ever lost someone, you know that there will never be a time when you don't miss the person... ache to talk to him one more time... see him smile... hear his laugh... But time does start to erase the memories of illness and hospitals and treatments. And for me, I can see him as young and healthy, bouncing around full of life.

Three years is enough to see the lasting impact of loss. I wish so much that Dan were here to see the birth of his best friends' kids and all of his nieces and nephews. I wish that he had a wedding day. I wish he had been able to buy his own house with a yard for a dog (or three, knowing Dan). I wish he could be here in June to have a big party for his 30th. I wish he were here to tell his story because even though we try, there was nothing like his living example of strength and honesty. These things don't ease with time... because as years go by he misses more and more "things". And my heart breaks a little more for him... and for all of us that don't have him in our lives every day.

But, I know that Dan would not want anyone to feel sorry for him. Of course he would want to be missed (and be the center of attention every once in awhile). I think he would like it that his friends will gather tonight and be together. And I think he would understand when we say it still hurts so much because we love so much. And that love will never fade away and never be replaced. Even though my heart is heavy, it is bigger and has more room because of Dan... even his loss. I know all of the good things he brought me will always be with me... and that makes tough anniversaries just a little easier.

Waeger Will Win

Wednesday, March 16, 2011

Two Years

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.

Wednesday, February 2, 2011

The Challenges of Surviving Cancer

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.


Wednesday, November 24, 2010

I Prefer the Roller Coaster

Giving Thanks

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

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

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

Wednesday, October 27, 2010

A Long Way to Go

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

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.