Lung Cancer Takes the Big Stage

By Jennifer King, Director of Science and Research at Lung Cancer Alliance

You may have seen news headlines about cancer advances last weekend. This is because it was the annual meeting of the American Society of Clinical Oncology (ASCO, a membership society for health professionals working in cancer) — a meeting of ~37,000 people that is known to be one of the best places to release high impact research results.

Some of our staff, including me, spent a few very busy days there and I’m thrilled to say that there is a lot to report. So much that I’m not sure how to fit it all into this blog – which is a great problem to have.

The Big Picture

First of all, the most important thing to say is that ASCO brought a lot of hope for those living with or at risk for lung cancer. Between the approval of screening coverage earlier this year and all the new drugs coming out, the terrible five year survival statistics for lung cancer will be changing.

At the meeting, I spoke to an oncologist who told me that in his rural community, 40% of patients who are diagnosed never go see their oncologist because they think a lung cancer diagnosis is a death sentence.  We have to change this attitude.  If people understood the dedication of health professionals to improving the lives of those with lung cancer and the pace of the research, everyone would see an oncologist to discuss their options.

Research  just about lung cancer was so impactful that the presentations were in the big rooms that seat ~5000 people

ASCO 1

Lung Cancer Session on Sunday at ASCO (Photo Credit: OncLive)

Even if you don’t want to read the scientific re-cap, here’s the big take-home points:

  1. There will be multiple more drug approvals in lung cancer by the end of the year
  2. Don’t give up hope
  3. Go talk to your doctor(s) regularly about your options if you are diagnosed or at risk for lung cancer

If you want more details on the science presented at the meeting, keep reading…

Immuno-Oncology

2015 seemed to be the year of Immuno-Oncology at ASCO.  Immuno-Oncology is using therapies that activate your own immune system to fight your cancer.  Although there are many types of immunotherapies, the kind making the most news right now are drugs that block two “checkpoints” called CTLA-4 and PD-1.

After I wrote my Opdivo (nivolumab) blog in March, a number of you asked me if it would work in non-squamous NSCLC.  At the time I didn’t have an answer, but I do now. Sure enough, a large research study shows a significant survival advantage of Opdivo (compared to Taxotere chemotherapy) in advanced non-squamous NSCLC and generally with fewer side effects.

ASCO 2

This made the front page of the meeting’s newspaper.

The key phrase at ASCO is always “practice-changing.”  A research study is practice-changing if it means that a doctor will actually change what he or she does or prescribes based on this new data.  This is what clinical researchers aspire to…making a difference in the care of patients.  This result was considered practice-changing and I’m sure we will be seeing Opdivo approved by the FDA for advanced, non-squamous NSCLC soon.

As mentioned in the Hot Topics on our website recently, there is also a competitor drug, Keytruda (pembrolizumab), that also targets PD-1 and is likely to receive FDA approval this year too. Notably, early data on both Opdivo and Keytruda in extensive small cell lung cancer was also presented. Both of the studies had promising results that indicated that some of the patients were having very favorable responses.  More research needs to be done in small cell, but this early data indicates that immuno-oncology drugs may eventually also be used in this type of lung cancer that has few options.

The data on immunotherapy in lung cancer look very promising, but there were also many questions raised.  In some studies, patients with higher levels of a protein called PD-L1 (which interacts with PD-1) were more likely to respond to these drugs. But this wasn’t true in all cases and it wasn’t clear how much PD-L1 needed to be present to make you more likely to respond.  There was also data presented  that suggested that the more DNA changes (mutations) you have in your tumor, the more likely you are to respond on a PD-1 drug.  This implies that former smokers might be more likely to respond to these drugs, but the data is not clear and some non-smokers do respond.

There is also an entire pipeline of additional drugs in this space that we will see over the next few years. This includes a PD-L1 inhibitor, atezolizumab (formerly MPDL3280A) which has already been designated a breakthrough therapy by the FDA.  Promising data was presented at the meeting on this agent too and there is a large clinical trial underway.

One very important advance across oncology was the presentation of combinations of immunotherapies.  There was huge news in melanoma that Opdivo was significantly better than Yervoy (ipilumumab), the CTLA-4 drug that was the original poster child for cancer immunotherapy. In this study, if patients did not have high levels of the PD-L1 protein, treatment with the combination of both Opdivo and Yervoy was even better than either drug alone.

This positive effect with combinations is likely to be true in lung cancer as well and there was early data presented that the Opdivo and Yervoy given together could be better in small cell (but needs more testing) as well as research on a very small number of patients with advanced NSCLC on both Keytruda and Yervoy, that showed disease control (no progression) in ~80% of patients.   So there is a lot of excitement for the future about combinations of immunotherapies along with combinations of immunotherapy and other types of agents.

All in all, there’s a huge buzz about immuno-oncology and we will see a lot more about these types of therapies in the coming year;  however,  there are still a number of questions to answer about how to use the drugs for the best patient results at the most reasonable cost.

Of note, pharmaceutical companies know this topic is confusing and are trying their best to educate patients and caregivers. Check out Bristol-Myers Squibb’s I-O page (where you can also raise a flag to honor someone  and support LCA) and this variation of “Angry Birds” from Genentech (that the science geek in me loves), where monoclonal antibodies slingshot to find the cancer cells that are “hiding” from the T-cells.

Check back next week for more data from the meeting on targeted therapies.

Going Above and Beyond

Lynn Cole

Lynn Cole, RN, BSN, OCN, Thoracic Navigator at Gibbs Cancer Center & Research Institute

We are thrilled to announce that Lynn Cole, RN, BSN, OCN, Thoracic Navigator at Gibbs Cancer Center & Research Institute, a Lung Cancer Alliance Screening Center of Excellence, was awarded the 2015 Oncology Certified Nurse of the Year! Not only is this a testament to the hard work Lynn and her screening center are doing, but also to the advancements and achievements we have accomplished as a community. Lynn facilitated and manages a program to provide lung cancer screening to those at high risk. Through her efforts, 91 patients have received screening.

We sat down with Lynn to learn a little more about her work.

What do you do as the Thoracic Navigator at Gibbs Cancer Center & Research Institute?

As a navigator I help with educating the patients and their families on any testing/procedures they may undergo and the process of navigating the medical system. I make sure they know the importance of national guidelines and how they relate to their disease. I strive to decrease time from diagnosis to treatment.

My mission revolves around awareness, education and removal of barriers. I strive to assure that each patient and family understands the process of diagnosing their cancer. When patients and families understand the process they become empowered to make informed decisions about their care.  I try to be their biggest advocate for whatever decision they make; therapy or comfort care. Sometimes, I am just a shoulder to lean on or an ear to vent to.

Why do you do what you do?

I was inspired to become an oncology nurse by the nurses who took care of both my grandfathers as they underwent therapy for cancer. Those nurses do not know how much of an impact they had on me. They were compassionate to my grandfathers and to all the family.

 

What does receiving the award mean to you?

Receiving that award has meant a great deal to me. I still have a hard time believing that I won. Without the support of the leadership and my co-workers at Gibbs Cancer Center, I would not have won the award. They make my job possible. I really don’t believe that what I do is very special; it is what a good oncology nurse should do; educate, support and advocate.  I believe that oncology nurses are called to our work; it’s not a job, it’s who we are. It’s who I am.   I am a nurse 24/7/365. Just because I leave work, doesn’t mean I stop thinking about my patients.

 

To learn more about Lynn and her amazing work click here!

 

To learn more about your risk and whether screening is right for you or a loved one go here: www.atriskforlungcancer.org

Becoming a Survivor

By Tonie Forster, 23 lung cancer survivor

Tonie Forster, 23 year lung cancer survivor

Tonie Forster, 23 year lung cancer survivor

I was 38 years old at the time of my diagnosis of small cell lung cancer in 1992.  At the time I considered this to be my worst nightmare, come true. Always knowing the risks I was taking and fearing this eventual outcome.

Initially the diagnosis was overwhelming for me and my family. We all experienced complicated emotions such as anger, guilt and shame. For me, guilt was the most powerful piece to this experience of suffering.

The word survivorship has special meaning for each of us contending with this diagnosis.  For me, survivorship opened the doors of change and the healing of myself, not just my lungs.  It allowed me to rekindle my lost spirituality, my compassion and empathy towards others.

I reclaimed past interests such as furthering my education.  I allowed myself finally, to be supported by those who loved me and those whom I loved.  In that way, the path to forgiveness opened for different situations and relationships.  I developed courage and learned how to let go.  Then I finally got it…nobody lives forever. Now is the time for all of it.

Throughout, whether I was going to die shortly or be around for a bit, my beautiful husband, parents, sister and friends supported me throughout the journey that I am still engaged in.  My husband tolerates with infinite patience still, my anxiety when I am up for a revisit to a follow up CT scan.  I recall too with great warmth and love, my Italian parents bringing lunch for me while I was sitting in five hour chemo runs, my sister joining for wig try-ons with my young nephew on her lap and my friends pulling me out of my bed to learn how to play Mah Jong.

My community all became survivors with me.  In the end survivorship is about healing within a community and the Lung Cancer Alliance allows for that to happen for all of us.  I am glad to be part of this process.

The Creation of Lung Cancer Alliance 20 Years Ago

By Peggy McCarthy

Peggy poses center with ALCASE co-directors Nadine Jelsing (left) and Betty Layne (right)

Peggy poses center with ALCASE co-directors Nadine Jelsing (left) and Betty Layne (right)

My name is Peggy McCarthy and I founded ALCASE, the Alliance for Lung Cancer Advocacy, Support and Education, now Lung Cancer Alliance, in 1995. My inspiration for doing so was a passionate advocate and dear friend who dedicated his life to fight lung cancer.

In the late 1990’s, McCarthy Medical Marketing (MMM), the organization I started in 1987 to design research-based educational programs which helped improve the healthcare system,  became aware of a great gap in knowledge, effective diagnostic procedures, availability of treatment and advocacy for people living with lung cancer.

At that time most people lived less than a year after diagnosis that was most often made when the person was in stage IV. MMM had suggested and then been contracted to create the first ever resource manual for people living with cancer. We were distributing it to all healthcare providers involved with diagnosing and treating cancer throughout the U.S.

In our research, which then involved thousands of phone calls, numerous trips to libraries, hospitals, and oncology centers, we could not find anything about lung cancer. No one seemed to care about this cancer that was frequently blamed on the person diagnosed with it; after all, s/he “caused it” by smoking. Lung cancer, then as now, had the highest death rates of any cancer.

We found one gentleman living in Chicago who seemed to care. Mort Liebling was a 78 year old lung cancer survivor when I called him for the first time and asked him to help with the guide. Mort would bring his business cards to his oncology office and suggested that the staff give them to people diagnosed with lung cancer if they wanted to talk to a 13 year survivor.

Within the year after the guide was published and hundreds of copies distributed to healthcare professionals in all fifty states and Washington DC, Mort was getting calls from people across the nation. During that year Mort and I became telephone buddies, as well. When we finally met, Mort asked me if, after he passed away, I would take over his role as an advocate for those living with lung cancer.

I agreed and, a few days later, returned to my office, sat down with our staff and we brainstormed. The result was to establish the Alliance for Lung Cancer Advocacy, Support and Education (ALCASE) the predecessor of the Lung Cancer Alliance in Vancouver, WA. The name was strategic because we wanted this organization to come up first in any list of cancer advocacy organizations, especially those that played any role in lung cancer.

Our first tasks were to recruit a board of directors, create a website, a newsletter and establish a telephone line where people wanting information about lung cancer could speak to an advocate.

The initial issues we tackled included:

  • Raising awareness about lung cancer, including who was and is affected
  • Raising awareness about the effect of lung cancer on the lives of women
  • Increasing treatment options for people with lung cancer
  • Finding and implementing the best early detection methods possible for those at risk

I visited Mort at his nursing home just days before his death; this was the second time I had seen him, in person, although by this time I knew Mort better than I knew many of my own relatives because he and I spent lots of time talking on the phone. I let him know that ALCASE was up and running well and would continue strongly after his death. His work would not be forgotten.

In 2002 we determined the time had come to move the organization from the West Coast to Washington DC. This had been our goal since founding ALCASE. Along with the move came the shortening of the name to Lung Cancer Alliance.

The ability to make this move was facilitated in large part by help from Sheila Ross who contacted me and began to work closely with ALCASE after her two sequential diagnoses of lung cancer. Sheila had been a Congressional staff person, holding a variety of positions for both parties in the Senate and the House. Her knowledge of the workings of Washington DC enabled this move to be smooth and leave the organization in secure hands. Everyone living with lung cancer is deeply indebted to this amazing survivor.

Sitting with Mort in the nursing home that day, I could never have imagined the accomplishments that have been achieved, the people we have helped and the lives we have saved. I am immensely proud to be part of such an incredible community and movement.

Mothers’ Strength

Jillian was a vibrant, health conscious, active young professional working as a Registered Nurse at Jackson Memorial Hospital’s NeuroSurgical Intensive Care Unit in Miami FL. At 28 years old, the pinnacle of her life, Jillian received an unexpected diagnosis of Stage IV lung cancer. She battled for 10 months before she passed away on May 4th, 2013.

Just two years earlier, in the next state over, also at the age of 28, Austin received the same shocking diagnosis of Stage IV lung cancer. Handsome, intelligent and gregarious, Austin had just married the love of his life and was embarking on an exciting new chapter of his life.  Austin lost his battle to lung cancer after 7 months on May 4th, 2011.

Both Jillian and Austin’s mothers, Ros and Cindy, met each other at the National Lung Cancer Summit in Washington DC this April, where they came to fight the battle their children no longer could. Over the course of the event, they found that not only did the date of May 4th play a significant role in both of their lives, but they had more in common than they could imagine. We sat down with Ros and Cindy to discuss their individual experiences and what advice they would offer other parents dealing with such difficult circumstances.

Cindy and Austin

Cindy and Austin

How did it feel when you found out your child had lung cancer?

  • Ros: It felt like our world collapsed in the blink of an eye. It didn’t make sense. Someone made a terrible mistake.
  • Cindy: Worst day of my life. I cried and cried and nothing could console me.

What was the first thing you did when you found out?

  • Ros: My husband started to cry. As for me – I was just numb. If there was an answer, a better way to fight this, I was going to find it and prove the doctors wrong.
  • Cindy: I have never thought about this, but looking back we were in shock. We immediately went into “How do we save his life?” mode.

How did you support your child?

Jillian and Ros

Jillian and Ros

  • Ros: We talked about the best place for her to get treatment. We thought about getting an apartment in Miami, so that she could keep her life as normal as possible for as long as possible. We made phone calls to people we knew to get options. In the end, Jillian wanted to come home, to us, in Tampa. She was comfortable and secure there.
  • Cindy: We made sure that his every need was met. Austin was already very sick when he was diagnosed.  We were at MD Anderson in two days, which was his choice of where he wanted to be treated.

What advice would you give to other parents who have a child with lung cancer?

  • Ros: Make the most of your time with your child. Respect their independence and their decision-making abilities. Talk to them about anything and everything. Some topics are going to be extremely hard. You can’t make them better or fix what’s wrong within them but you can make whatever time they have better. Watch movies, sing songs, hold hands and go for long walks. Spend quality time with them. Every day from here on out is a gift.
  • Cindy: Explore every option. Be as aggressive as possible. Get copies of everything. Ask a million questions. Research. Research. Research. Network with others. Allow others to help.

Why did you decide to get involved in advocacy?

  • Ros: For me it wasn’t an option. I knew that if I just grieved, I would wither and Jillian wouldn’t want that. So I had to speak for her, tell her story. Someone had to hear what she did for lung cancer and what it did to her, to us. Someone had to act and make changes in the funding and research that wasn’t getting done because of the stigma. I didn’t know who would do it if not me.
  • Cindy: I am not sure.   Austin expressed wishes to family and friends to work so that others did not have to go through what he did. I also began researching and looking for help online and discovered that I really knew nothing about lung cancer. The more I learned, the more I realized how misunderstood and grossly underfunded lung cancer is, both publicly and privately.  So I guess that fulfilling his wish was important to me.  Being an advocate also gives me a way to channel my grief into something positive.  I do know that doing nothing was never an option.

Where did you find strength through it all?

  • Ros: I guess a lot of it was always inside of me. But my husband and children were very supportive even though they didn’t know it. And I had a few very dear friends that got it, understood what I must be going through as a mother. I kept telling myself that Jillian would want me to fight for her.
  • Cindy: Faith, family, friends. Sounds like a cliché but it is true.  My husband was amazing, loving, supporting and took care of all of us.  Austin’s wife Haley was an incredible comfort for Austin.  They celebrated their first anniversary in the hospital but the strength and courage that they showed while facing this terrible illness was a beacon for all of us.  They tried to focus on thankfulness during thisworst of times.

How did others initially respond when they were first told the news?

  • Ros: We told our sons first and they both cried and denied it. This was their baby sister and they wouldn’t let this happen. My parents were in denial and didn’t think it was as bad as it really was. We told them we needed them to take care of themselves because our focus was going to be on Jillian. My siblings said they were sorry but it would be okay. They refused to understand that this was a terminal disease. Our friends were very understanding, knew what the words lung cancer meant and that they would be there for us.
  • Cindy: With support, sadness, many questions and worlds of offers to help in any way. I really cannot say enough about Austin’s group of friends. They rallied around him, taking turns staying with him, getting him out when possible, loving and supporting him.

 

“I now try to think, ‘Okay, this is the worst thing in the world that could happen to me, and now what can I do about it? How can I make a difference in this fight?’”   – Cindy

 

To learn more about Austin and Jillian’s stories, visit http://www.austinlaceyfund.com/ and http://jilliansdream.org/ .

Taking on the Fight She Didn’t Get the Chance To

Leonards 1

Leonards-1

Jacque

One moment captures who my Aunt Jacque truly was. It happened three days before she passed away. Jacque had made one rule for visiting her; no crying. We were alone and try as I might, I was breaking her rule. I had been holding her hand and rubbing my thumb along the top of her fingers to let her know I was there but stopped when the tears started. I focused on the floor to try to pull myself together, embarrassed that I would cry after Jacque asked us not to.

As I blinked back the tears, I felt Jacque’s thumb rubbing along the tops of my fingers. I lifted my head and she looked at me with the same tenderness she had hundreds of times before. Even now, she was stronger than me.

Jacque was the epitome of strength. She was 58 years old but didn’t look a day over 40. Every morning she went to a Hard Exercise Works class and then “cooled down” with Bikram Yoga. Jacque also dedicated most of her time to helping the community. She had touched nearly every charity in our area and had even revolved her career around encouraging people to become involved in community outreach. She was funny and kind and determined and made a difference in thousands of lives.

On January 1st, 2013 Jacque was diagnosed with lung cancer. Four days later she passed away. She never had the opportunity to fight back – and I know she would have.

Melissa and Kelly Leonard at the Lung Love Run/Walk West Palm Beach event

Melissa and Kelly Leonard at the Lung Love Run/Walk West Palm Beach event

After Jacque passed, my mom Melissa (Jacque’s sister), decided to take on the fight she didn’t get the chance to. Mom did some thorough research on lung cancer associations and quickly realized the best organization in the field is Lung Cancer Alliance.

We have spent the last year working with this incredible organization and preparing for the first ever Lung Love Run/Walk in Florida. The work they do is unmatched in its dedication to patients and caregivers and raising awareness.

In September, we spent a life-changing two days with the organization and some of its many inspiring survivors and advocates in Washington D.C. storming the capital. We knew then that we could not have picked a better partner and we are so happy that they decided to open the Lung Love Run/Walk to West Palm Beach.

Our walk took place March 7th and the one word that comes to mind when I describe it is ‘magical’. For months, we had watched the teams increase and our funds raised grow. We cheered when the five person team, “George’s Crew”, hit $1,000. We had never even spoken with these people – but we were now forever connected to each person that signed up.

I could not be more proud of the incredible movement my mom has spearheaded in West Palm Beach and I am so thankful she has shared this experience with me. What started out as a way to honor and memorialize an incredible piece of our family has turned into a responsibility to allow others to do the same while we celebrate the increasing amount of survivors in our area!

 

Every Little Bit Counts

Carol Tietz, lung cancer survivor and LCA Phone Buddy

Carol Tietz, lung cancer survivor and LCA Phone Buddy

By Carol Tietz, lung cancer survivor, advocate and Phone Buddy

My name is Carol; I am a 5-year small cell lung cancer survivor.  I’m one of the lucky few that make it this far and I am thankful to still be here.

I joined the Lung Cancer Alliance (LCA) Phone Buddy program two years ago after a Shine a Light on Lung Cancer event at Christ Hospital in Oak Lawn Illinois. Being a Phone Buddy has been a rewarding experience marked with the satisfaction of speaking with and helping other small cell survivors as well as the sadness of losing others – one buddy passed away last December.

I signed up for the Phone Buddy program to help others going through their lung cancer journey, but have come to find it has helped me just as much. The people I have met through volunteering with LCA have touched my life in so many ways. The lung cancer community gives me a strength that I never knew I had.

I am looking forward to seeing this community, including my fellow Phone Buddies, at the National Lung Cancer Summit next week! I attended last year and had an amazing, unforgettable experience where I met some incredible people all committed to fighting lung cancer and raising awareness. We went to Congress and met with our state representatives. I feel that we made a difference by giving people a personal connection to lung cancer just by sharing our stories. I can’t wait to see old friends, meet new ones and, together, give a voice to lung cancer.

Whether you share your story, attend an event or host a fundraiser, every little bit counts, not only in the lives of those you are helping, but also in your own.

Find out how you can get involved as a Phone Buddy and other volunteer opportunities!

Health Policy: A Look Ahead

Marianne Myers, LCA Director of Health Policy

Marianne Myers, LCA Director of Health Policy

I have only been working at Lung Cancer Alliance for three weeks and in that short period of time I have connected with more amazing people, heard more inspirational stories and been more motivated for a cause than ever before. This cause is personal to me. Every day I come to the office I am not only fighting for each person in our community, but also for my father who was diagnosed with lung cancer in 2012.

My role at LCA is Director of Health Policy. I have spent more than 18 years on and off Capitol Hill raising awareness, securing funds and advocating on behalf of several public health and education entities. I am jumping right in with our 7th National Lung Cancer Summit coming up on April 12th where we will have 100 lung cancer advocates to Washington DC to share their stories and impact direct change up on the Hill by speaking with their local representatives about the needs of our community.

Leading up to the Summit, I want to share with you some of the items we will be fighting for on the Hill that day, looking ahead this year and how you can help bring a voice to this important cause. Below are our two main focuses this year.

 

LUNG CANCER SCREENING AND EARLY DETECTION

Where It Stands: Under the Affordable Care Act, lung cancer screening is considered an essential benefit which requires private insurers to now cover the service for those at “high risk.” Additionally, earlier this year Medicare decided to also cover this life saving benefit.

Taking Action: At the Summit, as well as throughout the year, we will build upon the most recent designations by focusing on public education and implementation of lung cancer screening. We are working with Congressional Members and staff to ensure that HHS (US Department of Health and Human Services) and CMS (Centers for Medicare and Medicaid Services) are conducting proper outreach and working with states and physicians to reach everyone who falls within the at risk population and educate them on the importance of lung cancer screening.

 

21ST CENTURY CURES INITIATIVE

What Is It? The 21st Century Cures bill is legislation that seeks to address the way in which new drugs, therapies and medical devices are approved across all diseases.  Sometimes it can take up to 15 years for a new drug or device to be approved, which is unacceptable. The bill promotes new and advanced technology, reduces “red tape” in an effort to get new drugs, and technologies to market sooner which, in turn increases the quality and timeliness of patient care.

Taking Action: As Congress works through this comprehensive legislation, we are ensuring lung cancer is a key focus, including provisions that focus on improving patient survivorship, supporting new pipelines for research funding and increasing transparency and accountability.

 

Look out for ongoing updates on our Health Policy work throughout the year!

The Meaning of Green

I’ve never had to find an excuse to celebrate St. Patrick’s Day. I come from a large Irish family where there is predominance of red hair, pale skin and Guinness lovers. And I suppose it doesn’t hurt that I was born on the day adored by Irish and non-Irish alike. I am a St. Patrick’s Day baby, arguably the best day to celebrate a birthday. Yes- I am Irish through and through, and wearing green isn’t a bandwagon I jump on once a year- it’s a birthright.

Meg and Dan

Meg and Dan

Eight years ago, the color green became significant to me in an unexpected way. In May 2007, I met the man who would eventually become my fiancé after just 10 months of dating. Dan Waeger is impossible to describe in just a few short paragraphs. He lived life with the wisdom of an old man and the wide-eyed wonder of a child. His energy and smile were infectious. He was the type of person that you could spend a few hours with, and leave happier and more inspired. When we first met, he casually mentioned that he was a cancer survivor. It was hard to believe- he was 24, and we were standing in a bar after playing football in a social sports league. He certainly didn’t look or act like he was living with cancer. As we started dating, I learned that not only did he have cancer, he had stage IV lung cancer and had been in treatment since he was 22. Dan didn’t look sick, and was the most “happy go lucky” person I’d ever known.

As the weeks went by, I would accompany Dan to treatments and hang out during recovery. It was easy to see he was a passionate cancer advocate and survivor who strived to make a difference for others living with cancer, both through his job as development director for the National Coalition of Cancer Survivorship and through the National Collegiate Cancer Foundation, the organization he founded to help young adults with cancer pursue education. In addition, he found time to advocate for the Lung Cancer Alliance and spend hours on the phone mentoring others living with lung cancer.

We made weekend road trips to Livestrong events and public speaking engagements. When I asked Dan why he spent so much time devoted to cancer advocacy, he replied “Almost immediately after I was diagnosed, I realized that I would spend a great deal of time thinking about cancer. And I didn’t want to just sit around and think about it. I want to do something about it.” And even though cancer was second nature early on in our time together, our life never revolved around it. We had fun and laughs wherever we went, and pretty soon, we were together every day.

Meg and Dan 2

Dan and Meg at the beach.

Falling in love with Dan was the easiestthing I’ve ever done. And he certainly swept me off my feet with each romantic and silly gesture. When it came to love, Dan was over the top. When he proposed, he took me on an all-day scavenger hunt to all of the places that held significance in our relationship- the bar where we first met, the park we played Frisbee after our first date because neither one of us wanted to go home, to church to pray for a long life together. Each stop also had a small gift. And one of those gifts was a green bracelet with the words “Waeger Will Win”.

Dan’s friends had the bracelets made when he was first diagnosed. The phrase he had used to trash talk during any competitive event and especially on the golf course soon became his mantra as a survivor- Waeger Will Win. When we first met, I asked about the bracelet. After giving me the backstory, Dan asked if I wanted one. At the time, I felt it was reserved for his close friends and family, and not someone he had just met. But as the months went on, I really wanted to wear that green bracelet! And so on the day that he proposed- 3 days after St. Patrick’s Day and my birthday- I finally got the best piece of green I will ever wear. My own Waeger Will Win bracelet. I joked that I knew Dan was the one because he loved the color green, and that qualified him to marry a girl born on St. Patrick’s Day.

Tragically, we found out that Dan’s cancer spread just three months after we were engaged. And even though treatment options were slim, Dan continued to face each setback with his “Will Win” attitude. He continued to go to work, run his foundation, advocate for other survivors, hang out with friends and even try to run a 5k. And he never once felt sorry for himself. He never got angry if someone asked if he got lung cancer because he smoked. Rather, he used those comments to educate people about the stigmas associated with the disease. He continued to live life every day. We continued to plan our wedding, celebrate holidays and take a vacation.

Dan and I were never able to get married. He passed away March 16, 2009, the day before my birthday and 12 days before our wedding day. Looking back, I don’t think either of us felt we really needed the piece of paper to prove our commitment. Some people think it is a blessing that Dan didn’t pass on my birthday. But I don’t think I’ll ever look at St. Patrick’s Day the same.

He still lets me know I am loved. Each year on my birthday, Dan still sends me flowers. I long since took off my engagement ring and have moved forward in life with yet another amazing man who stands by me as I serve as a cancer advocate, caregiver mentor and run Dan’s foundation. But I still wear my green Waeger Will Win bracelet- seven years strong as of March 20th. Where the green once meant St. Patrick’s Day to me, it now means so much more.