24 Hours of Golf

Curt and his friends at this year’s event.

By Curt Groebner

It all started in mid-summer 2008, when my buddy and I were working our summer job at a local golf course and looking for something fun to do. As a couple of crazy college kids seeking a claim to fame, our big feat would be to play 24 straight hours of golf. We grabbed a dozen light-up golf balls, some extra clothes, and a few snacks and headed out just like any other round of golf…except for the minor detail that we teed off at midnight. 24 hours later, I was stumbling across the finish-line by myself, nursing countless sores and blisters and wondering why I ever thought this would be a good idea.

The real light-bulb moment didn’t come until after the event as I told people what I had done. I was continually asked if I did it for a charity, as the response “I thought it would be fun” seemed downright ridiculous. That’s when I realized this event had all of the makings of a very effective fundraiser. It had the shock factor, it was a quantifiable feat and I was just crazy enough to do it again.

I let that thought stew for two years as the legend continued to grow. Somewhere along the way, I was able to find three other younger golf shop coworkers who had taken a particular fascination in the concept of 24 hours of golf. Their interest was just the spark I needed for the “All Day Golf” campaign to be officially born. We launched our first fundraiser in 2010 without any goals or expectations, chose a generic charity and started the mission.

Curt at the 2014 event wearing the LCA t-shirt.

Fast-forward to today and we’ve now completed the challenge eight years in a row! We’ve seen it all by now, from playing through a torrential downpour at 3:00am to explaining to confused policemen why we were on the course in the middle of the night (that luckily got sorted out!). Our eight years have added up to 192 hours on the golf course together and over 1,000 holes played!

We’re fortunate to have found a way to turn something we love into a means of giving back. The biggest game-changer came when I found just what cause meant the most to me. The unfortunate reality, that I share with many advocates, is that it often takes a tragedy to truly find a purpose for what you’re doing. For me, this occurred in 2013, just a few weeks before we launched our fourth year of the campaign, when I found out that my uncle had been diagnosed with lung cancer.

This wasn’t my first run-in with lung cancer, as it had ultimately claimed the lives of two of my grandparents a decade before. This newest hit to me and my family now gave me something to fight for; a clear direction. In my search for ways to help, I came across Lung Cancer Alliance (LCA). Their mission was a perfect fit for what we were trying to do with our fundraiser. Through LCA, we’re not only able to contribute towards research and the quality care needs of patients, but we also can focus on the often-overlooked mission of ending the stigma that continues to hang a cloud over lung cancer support. We were proud when we chose to join forces with LCA, and we haven’t looked back since.

We’ve now raised over $36,000 alone in our five years since partnering with LCA.  This was capped by us cracking the $10,000 barrier for our 2017 fundraiser on August 12th! We completed 147 holes of golf and proudly carried the torch for our cause, but the real heroes have always been our donors. We’ve been amazed by the support we’ve received through the years and how it has continued to grow.

My memories of my uncle always start to flood back to me this time of the year along with the changing seasons. My uncle and I spent our closest times hunting together every fall, and I used to spend each Thanksgiving over at his house. He carved almost every Thanksgiving turkey of my childhood and that was a tradition I’ll never forget. Just as it goes, we lost him on Thanksgiving morning three years ago.  November carries a different meaning for me now.  I suppose it is only fitting that November be National Lung Cancer Awareness Month, so it is as good a time as any for us to speak out, share our stories, remember our loved onesand keep fighting the good fight!

Carrying on forever with love for Grandma, Grandpa and Uncle Chuck. We hope to continue to shine a light for many years to come!

 

Follow Curt’s lead and create a lung cancer fundraiser that fits your personality this November! Learn more.

In November I Shine a Light!

By Sadie Hansen, Oncology Program Coordinator, Avera Cancer Institute

November, next month, is National Lung Cancer Awareness Month. The official color of lung cancer awareness is clear, but it might as well be invisible to most Americans. There is a stigma attached to this diagnosis that is not present with other cancers. If you tell a friend or colleague that a loved one has been diagnosed with lung cancer, the first response almost always is “Did they smoke?” Any other type of cancer diagnosis will elicit a response of pure sympathy.

Researchers are on the verge of a seismic shift in our ability to diagnose and treat lung cancer and more funding is desperately needed to bring these promising new therapies to fruition. Lung cancer takes more lives each year than breast, colon and prostate cancers combined, but is one of the least funded cancers. The good news is there are ways you and I can change this!

Each year my colleagues and I host a Shine a Light on Lung Cancer event where we work, Avera Cancer Institute. It gives those touched by lung cancer a platform to raise awareness, learn more about the disease and connect with community members and healthcare professionals alike.

It all started in 2012 when a young lady who had lost both her parents to lung cancer brought the event to our attention.  She helped get it started and her passion continued through other advocates over the years with a goal of raising awareness for lung cancer and bringing the community together.

What does our event this year look like? It includes an educational piece, panel discussion and a heart-warming ceremony to honor those we have lost. We are excited about our topic “Don’t Let Cancer Steal Your Joy: How to Live Well Each Day with Cancer.” The impact of a cancer diagnosis is felt on every level. While the treatment we receive from our oncologist helps us to heal and treat our cancer at a physical level, there is also great importance in healing emotionally throughout the cancer journey. Dr. Ted James MD, MS and Julia Wick, MS, LCMHC have begun a national campaign on finding joy despite the harsh realities of cancer. Our ultimate goal for the event is to support patients and families seeking to optimize their quality of life as cancer survivors.

Last year’s event brought about 150 people and we hope to see even more this year!

Attend Sadie’s Shine a Light event on November 9th in Sioux Falls, South Dakota or find an event near you! If you are interested in starting an event at your local healthcare facility contact Maggie at events@lungcanceralliance.org.

2017 National Advocacy Recap

More than 100 lung cancer survivors and advocates united in Washington, DC to ignite change for all those touched by the disease by sharing their personal lung cancer stories with our nation’s leaders at the 9th National Advocacy Summit, which took place on September 27 and 28.

Laurie Fenton Ambrose, Karen Arscott DO, MSc and Bonnie J. Addario.

The Wednesday session kicked off at the historic Omni Shoreham hotel with a special live broadcast of the “Living Room” series with a discussion on “Catalyzing More Effective Treatments and Cures.” Lung cancer survivor, advocate and friend, Bonnie J. Addario, moderated a fireside chat with Ryan M. Hohman, JD, Vice President of Public Affairs at Friends of Cancer Research; Linda House, RN, BSN, MSM, President, Cancer Support Community; and Jennifer C. King, PhD, Director of Science and Research, Lung Cancer Alliance. The panelists discussed patient empowerment and how programs like LungMAP and LungMATCH are important guides to decision making around treatment options. The lung cancer community watched via YouTube. Watch it now!

We had a little fun!

The second discussion focused on “People Power: How Your Voice Makes a Difference!” and was moderated by Laurie Fenton Ambrose, CEO & President of Lung Cancer Alliance. Panelists included Karen E. Arscott, DO, MSc, Lung Cancer Survivor and Associate Professor of Medicine, Geisinger Commonwealth School of Medicine; Megan Gordon Don, MHS, President, MGD Strategies (previously, Vice President, Government Affairs & Advocacy, Pancreatic Cancer Action Network); and David Pugach, Chair, One Voice Against Cancer Coalition and Vice President, Federal Relations, American Cancer Society Cancer Action Network, Inc.  The discussion reminded us of the power we have when we join forces on an issue and that the one thing an advocate can do that nobody else can is tell his/her story. David Pugach reinforced “We have seen a 73% increase in NIH funding for lung cancer and that’s a direct effect of advocacy.”

We were lucky enough to have a guest appearance, via Facebook LIVE, from John Matthews, a fellow lung cancer advocate riding his bike from east coast to west coast in the fight against lung cancer. He “dialed in” from the road and gave our advocates the push and energy they needed to head into their day on Capitol Hill.

Kicking off our day on Capitol Hill!

The Summit advocacy efforts expanded beyond our group in Washington, DC. For the week of September 25-29, we held the first ever Lung Cancer Advocacy Action Week. Friends, family and fellow advocates from across the country got involved and showed support by sharing fact graphics on social media channels and sharing their stories with state reps via email, mail or Twitter. We all used #Rally4LungCancer bringing our voices together in one collective movement. We increased our on-the-ground efforts with over 100 messages sent to state legislators and a reach of nearly 100,000 people on social media channels!

On Thursday morning we came together on the steps of the US Capitol, dressed in teal and ready to take on the world! We fueled ourselves with a kick-off breakfast where we heard from Rep. Rick Nolan (D-MN), founder and co-chair of the Congressional Lung Cancer Caucus, as well as Tony Coelho, former House Majority Whip and longtime disability rights advocate. Being an epilepsy patient himself, Coelho spoke from personal experience on the importance of telling one’s story and the difference it can make.

Deena and Roger Cook receive the Volunteer Leadership & Advocacy Award.

Feeling united, supported and eager, we hit the halls of Congress running! With over 140 meetings with Members of Congress across 27 states, we made a strong statement with a number of Representatives interested in joining the Caucus and educated them on facts about the disease. More importantly, we raised our voices and stories to those leaders with different viewpoints with the hope that putting a face to the disease will sway them to put patient’s needs first in the future.

The Summit ended with a Congressional Reception and Awards Ceremony in the Kennedy Caucus Room where three awards were presented. Senator Dianne Feinstein received the Michael G. Oxley Leadership & Advocacy Award for her ongoing commitment to the cause. The Congressional Staff Leadership & Advocacy Award was given to Will Mitchell, Legislative Director of Rep. Rick Nolan and the Volunteer Leadership & Advocacy Award was presented to Deena and Roger Cook, longtime lung cancer advocates and friends of LCA.

The Summit not only started a conversation and ignited change, but also raised our voices as one. We look forward to continuing these efforts all year long. To learn more and get involved, click here!

Honoring Our Champion: Richard Heimler 1960 – 2017

 

A special message from Laurie Fenton Ambrose, President and CEO of Lung Cancer Alliance

 

It is with a very, very heavy heart that I share the news that our beloved board member, Richard Heimler, passed away on Saturday. We have been in touch with the Heimler family and have made arrangements to travel to Richard’s funeral today in Stamford, CT.

This is devastating for us all as Richard was such a touchstone – on so many levels – to so many people.  He beat back odds time and time again. He instilled hope, brought greater compassion to those touched by the disease, and with his own pioneering involvement with clinical trials, helped advance new breakthrough treatments for specific lung cancer mutations.

Richard was not just a LCA Board member who served with distinction and strong sense of purpose.  He was our friend and champion.  He battled his lung cancer with grit and grace – never hesitating for a moment to bring levity to any situation with his extraordinary wit and sense of humor. His friendships ran wide and deep. His words always full of encouragement and hope – giving us permission to feel and to share – reminding us that we were never alone. Richard literally touched thousands of lives – the depth of his goodness knowing no bounds.

We have lost a friend and colleague.  Our hearts are heavy.  But Richard left footprints for us to follow – and in his memory and honor – we will – and carry forth the work that meant so much to him and the community we serve.

To learn more about Richard, please view our 2014 announcement of his appointment to our Board of Directors.

 

 

15 Ways to Shine a Light on Lung Cancer this November

Fall is here and November is just around the corner which means it is time to get planning for Lung Cancer Awareness Month. This is a time for our community to unite forces to raise awareness, funds and hope to honor those we have lost, support those fighting and help those down the road. Here are 15 easy ways to make a difference this November at your workplace, school, neighborhood and amongst your family.

CLICK HERE to get started and learn more!




 

When Lightning Strikes Twice

Lara (far left) and her children.

By Lara Blair, RN

11 years ago, when I was 39 years old, after having spent six months caring for my husband, Bill, who had been diagnosed with malignant thymoma, I suddenly developed a dry hacking cough. In the preceding months, I had lost some weight, but had attributed it to the stress of supporting our family through the challenges of Bill’s cancer treatment. When the X-ray showed an area of concern, it was impossible to think that lightening would “strike twice,” but indeed I did have lung cancer. A 6.5cm tumor attached to the back of my chest wall and one lymph node showing reactivity on a PET scan.  What followed next was almost a year of chemo, radiation, surgery and more chemo.

It was the hardest year of my life, but in many respects, it was also the best. Our family was surrounded and supported by many friends, family members, co-workers, our kids’ school teachers, fellow church go-ers and medical team members.  The outpouring of kindness and generosity gave our family strength that we could never have had on our own. To be on the receiving end of so much love and kindness was awe inspiring and we are forever grateful.

Soon after returning to my job working as a nurse in Labor and Delivery, the thoracic oncology team at my hospital asked me to join them in their multidisciplinary clinic as a nurse navigator for lung cancer patients. It was a great gift and an enormous privilege to be able to share what I had learned with patients going through a lung cancer diagnosis and treatment. And knowing how rare my recovery was, it gave a purpose to my survival.

It was in my role as a Nurse Navigator, planning a “Shine A Light” event* at our hospital that I first encountered Lung Cancer Alliance (LCA). What an incredible organization! The support that LCA provides to patients, families, caregivers and medical teams is invaluable.

My advice to anyone experiencing a lung cancer diagnosis? Know that it is not a death sentence and that for every type of cancer at every stage there are people who LIVE! Why shouldn’t that be YOU? Be receptive to kindness and help when it is offered and reach out when you need support.

 

Shine a Light on Lung Cancer are educational events that take place in healthcare facilities across the country during November, Lung Cancer Awareness Month. They offer a platform to raise awareness, connect and educate the community on the latest lung cancer research and treatments. Click here to learn more about hosting a Shine a Light event at your local hospital or cancer center.

If you have questions about your diagnosis, treatment or anything lung cancer related, contact us at support@lungcanceralliance.org  or call 1-800-298-2436.

Why I’m Riding My Bike from Coast to Coast

John and his Mom

By John Matthews

Mom had a nagging cough; one that simply wouldn’t go away. I didn’t think there was anything to worry about. A couple of tests, some medicine and she would soon feel better.

At the time, she was almost 80 years-old, in good health and very happy with a loving husband, 6 kids and 19 grandchildren she adored.

The test results came back and with them the terrifying words, “You have lung cancer.” From that day on, our family was forever changed.

While Mom was sick, I learned a lot about lung cancer: the low 5-year survival rate, stigma surrounding the disease and lack of research funding.  More needed to be done, but what could I do?

Training for the cross country ride.

Fast forward to 2015, four years after we lost Mom, Dad and I decided to attend Lung Cancer Alliance’s National Advocacy Summit in Washington, D.C. It provided us with an opportunity to make Mom’s voice heard, learn more about the disease and educate our nation’s leaders.

I walked away from DC inspired!  I wanted to do more.  Lots more.  And then, it hit me. I would ride a bike across the country to bring the lung cancer community together and get people talking about this disease from coast to coast.

The response to this “insane idea” (my wife’s words) has been overwhelming.  There are over 40 people pitching in on so many fronts, doing things like helping me buy a bike (prior to this, I was not a cyclist), mapping the route, promoting the event and even offering advice on what to pack and how to eat once I get on the road.

And so, TODAY, August 24th I leave on bike from Pennsylvania for a seven-week adventure that will take me across the country to San Francisco, CA. My goal is to simply do my part to make a difference in the fight against lung cancer by raising awareness and funds in memory of Mom.  The money raised goes to Lung Cancer Alliance and Bonnie J Addario Lung Cancer Foundation, who are focused on ending the stigma, advancing research and advocating for early detection to save lives.

So what can YOU do to help?  Well, here are a few ways to get involved:

  1. Share your story and be one of the tributes featured along the ride! Learn more.
  2. Join us on September 29th and 30th, two special days where everyone in the world can do something (walk, run, swim, etc.) while I am riding my bike. Find out more.
  3. Donate to help the lung cancer community.
  4. Spread the Word! Tell your community about the ride and keep up on my journey via Twitter (@Ride4Lungs) or see my progress here.

Thank you for your support! Be sure to keep an eye out these next seven weeks. Who knows? I may be coming through your town. I’m the guy with the sore legs and big smile doing my part to fight lung cancer!

Easy Ways to Relax Today!

Relaxation Day is today! Who knew?!? What a great excuse to kick back, calm down and do something nice for yourself. When it comes to facing cancer and the process that comes with it, it can be easy to forget how to relax. Taking care of yourself and your needs, whether you are caring for someone with lung cancer or have it yourself, is incredibly important. While there is no one-size-fits all approach to relaxing, here are some tips that might help:

  • Try Healing Breath: The cancer process is likely to cause anxiety (you are not alone – this is normal). It is in these stressful moments that relaxation techniques like healing breath are incredibly useful. Here’s how it works: Sit down and put your chin to your chest. Breath out short, little burst 10 times. Then take a deep breath in through the nose and out through the lips, making an “Ah” sound as you exhale. Repeat this a couple times. Click here for a video demonstrating healing breath. (Source)
  • Get a Massage: Massage offers a caring, safe touch, as well as, pain relief, which generally produces a “relaxation response.” The relaxation response is a state in which your heart and breathing rate slow, your blood pressure goes down, your production of stress hormones decreases and your muscles relax. The relaxation response also seems to increase the available level of serotonin, which is a chemical in the body that positively affects emotions and thoughts. (Source)
  • Do Some Yoga: Yoga brings together physical and mental disciplines that may help you achieve peacefulness of body and mind. This can help you relax and manage stress and anxiety. Yoga has many styles, forms and intensities. Hatha yoga, in particular, may be a good choice for stress management. Hatha is one of the most common styles of yoga, and beginners may like its slower pace and easier movements. (Source)
  • Go Outside: Being in nature, or even viewing scenes of nature, reduces anger, fear, and stress and increases pleasant feelings. Exposure to nature not only makes you feel better emotionally, it contributes to your physical well-being by reducing blood pressure, heart rate, muscle tension, and the production of stress hormones. So take a walk, go for a hike or just take a seat in your backyard! (Source)

If you have questions about lung cancer or what you are going through, please contact us at support@lungcanceralliance.org or 1-800-298-2436.

 

 

Workout for the Cause

Mike, his dad and sister during their time in Africa.

By Mike Suskin

Two things I admired in my father, and I try to exhibit these traits in my own life, were his strong work ethic and an ability to put things into perspective. While he was a dedicated and skilled airline pilot for over 20 years, he never lost sight of what was most important: his true loves, charity work and community.

Even after he was diagnosed with stage 4 lung cancer and could no longer fly planes, he always prioritized those passions. At one point, he moved back to his hometown of Bulawayo in Zimbabwe to work with ZimKids, an organization focused on helping families stay together despite the death of parents, illness and homelessness. He also used this time to  reconnect with friends and family from his childhood.

My father passed away in November 2014 after a nearly seven year battle with lung cancer. Shortly thereafter, I found myself looking for a productive and fulfilling outlet to turn my grief into something positive.

Enter Crossfit.

Mike at CrossFit, doing what he loves.

I had heard about CrossFit previously from a few friends and decided to sign up for an introductory class. CrossFit is a workout that incorporates elements from high-intensity interval training, Olympic weightlifting, plyometrics, powerlifting, gymnastics, calisthenics and other exercises. As you can imagine, it is intense, fun and constantly changing, but most importantly, there is a focus on the community and becoming the “best version of oneself.”

CrossFit, and my gym in particular, is very big on fundraising. We have a few workouts each year to raise funding for various charities. A few months back it occurred to me that fighting lung cancer correlates quite well with this type of exercise, and when I asked the Head Coaches about putting on an event, the answer was an unquestioned “Yes!”

Next Saturday, my gym will hold “The Adrian Suskin Lung Cancer Memorial Workout.” My hope is that it will inspire people and anybody touched by this disease will be able to band together to fight and show each other support. I like to think that through Crossfit, I have found the same type of supportive community that my father tried to create for others throughout his entire life.

The Adrian Suskin Lung Cancer Memorial Workout will take place on Saturday, August 12th from 8:00 – 10:00am at Outsiders Crossfit in Hunt Valley, MD. Learn more!

 

Coping Series: Anxiety Before, During and After Lung Cancer Treatment

If you have lung cancer, it is likely you have experienced anxiety. Anxiety is among the most problematic issues of those living with the disease. On Monday, we held the third in our Coping Webinar Series, focusing on anxiety before, during and after lung cancer treatment.

We were joined by Boris Krivitsky, DO and Amy Jamerson, MSW, LCSW from Carolinas HealthCare System, Levine Cancer Institute, as well as six-year lung cancer survivor, Kurt Hammock, to discuss recognizing and managing anxiety during your cancer journey.

What is Anxiety?

A feeling of worry, nervousness or unease, typically about a future event or something with an uncertain outcome. Anxiety is a normal feeling associated with coping and adjusting to a new reality. It often appears in the form of jitteriness, sleeplessness, clammy hands and avoidance of crowds and leaving home.

Managing Anxiety

  • Recognize It: If you are asking the question “Do I have anxiety?” then you probably do. The first step to getting help is acknowledging that you might need help.
  • Talk About It: You are not alone; everyone who is faced with a cancer diagnosis experiences anxiety. Telling someone how your feel can make you feel better right away and open the door to help.
  • Transition Periods: Anxiety often arises during “transition” periods in the cancer journey, including diagnosis, treatment and survivorship. Be aware of anxiety during this time as it tends to raise questions about unknown elements of the future.
  • Visualization: We cannot control our thoughts, however we can control the value we put on them. Visualization exercises help up gain control of our thoughts. See the “Resources” section for a helpful visualization exercise.
  • Adjust Your Expectations: Learn to expect anxiety. It is like an unwanted houseguest; you cannot get rid of it, so figure out how to manage it and minimize time spent with it.
  • Be Present: When anxiety arises, your brain is in the future but your body is in the present. Be in the moment and enjoy the time you have. Stay busy with activities that bring you pleasure and consider helping others, it is one of the most fulfilling things you can do.
  • Simple Daily Actions to Help Reduce Anxiety:
    • Good Sleep: Helps healing and recovery; increase sleep by doing more during the day
    • Stay Active: Get up, walk around, set goals; being active will help you sleep better, too
    • Eat Well: Eat enough good quality calories throughout the day
    • Quit Smoking: Instead use breathing techniques to reduce anxiety

Medical Interventions

  • Medication should be a last resort to treat anxiety because it tends to have side effects and can result in dependence and addiction. That being said, if you are experiencing severe anxiety, medication is a helpful tool to get you back on track.
  • Anxiety is often accompanied by depression. Below are two types of medications prescribed to help. Talk to your doctor about what is right for you.
    • Antidepressants (e.g. SSRI, Prozac; SNRI, Effexor)
    • Benzodiazepines (E.g. Ativan, Xanax)

Resources

Click here to view the full webinar video.

For questions about anxiety and other side effects during your lung cancer journey, contact us at support@lungcanceralliance.org or call 1-800-298-2436.

Lung Cancer Alliance’s Coping Webinar Series is a program to help you manage the side effects and symptoms of lung cancer and its treatment. Click here to learn more.