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.

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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.

 

Every Day is Parents’ Day

By JoAnn DeCesaris Wellington

My father was the type of person you couldn’t miss when he walked in a room. It wasn’t that he was a big “talker” but rather when he did speak it was something you wanted to hear.

Geaton A. DeCesaris, Jr. was kind, smart, generous beyond words and most of all, loving. He was a strict, tough dad, but he would smother us in so much love that we always felt safe.

Some of my favorite memories of my father are trips he would take my sisters and I on, like rides in the car to his job sites and Sunday morning breakfast before church. He never took anything for granted, always soaking up every moment and memory. Whenever he was with us he would always say “what a treat!”

When my father was diagnosed with lung cancer, he turned to prayer, which was always the center of his life. We gathered friends and family to pray together to give him strength during a challenging time. His positive attitude, spirit and drive inspired all of us.  When doctors gave him just a couple of months to live, he would say “someone has to be that 1% and it will be me.” We were fortunate to have my father four years longer than anyone would have thought and we made the most of every moment we had together.

I am now a mother of two beautiful babies and three amazing step-children. My daughter is named after my mother and my son after my father. My baby boy has a big name to live up to. I pray that he is like my father with his drive for life, work, family and faith.

Prior to his diagnosis, my father had started a family foundation. Once he was diagnosed and learned more about lung cancer, he directed the foundation’s efforts to cancer research and treatment. Since my father’s passing, my mother, sisters and I are still the board members of the family foundation. We have been fortunate to find organizations like Lung Cancer Alliance whose hard work and dedication contribute to the great strides being made in lung cancer research and treatment.

Sunday, July 23 is National Parents’ Day, a day to honor and thank our parents. Each day is Parents’ Day for me. My father is always with me, whether it be in the smile of a stranger or the embrace of my children.

Where’s My Pink Army?

Jenny at the White House during the National Advocacy Summit.

By Jenny White

I was in pure shock when my surgeon told me “it’s lung cancer,” while in recovery after video-assisted thoracic surgery (VATS) that was performed to find out what was growing in the right upper lobe of my lung.

Because I had no risk factors for this diagnosis, obviously my next move was to google “lung cancer.” How did this happen to me? I thought I was doing everything right.  I was living in the healthy lane. I watched my diet, exercised regularly, drank in moderation and was even training for the first Women’s Half Marathon in Nashville, TN scheduled just 10 days before my surgery.

But, how did this happen to me?  I didn’t smoke.

Jenny (center) and teammates running for the cause.

Well, as it turns out, if you have lungs, you can get lung cancer.  I also quickly realized that being diagnosed at stage 1, and removing the cancer surgically, was fairly rare in the scheme of lung cancer. Only about 17% of the time.

The facts made it clear to me that I had to use my voice to bring awareness to this disease.  The only reason my lung cancer was found early was because I foolishly combined bleach and ammonia to clean my bathroom which landed me in the hospital. That serendipitous moment caused my physician to order a chest x-ray which lead to the radiologist noticing a small “something” which we watched over the next 10 months. It grew, was removed surgically and now I am 6 1/2 years cancer free.

I knew how lucky I was and wanted to do something to help others. Where was my “pink army”? I wanted to enlist.  I thought it made perfect sense to check out the websites of what I thought were the major players in lung cancer to see what advocacy opportunities existed.  Sadly, the only mention of lung cancer was under smoking cessation.

With a little more searching, I found Lung Cancer Alliance (LCA), which is based out of Washington, DC.  I love that part of their mission is to advocate for more lung cancer research funding from the federal government.  Through their National Advocacy Summit, I get to tell my story, educate my representatives and ask for their help in further funding lung cancer research.

That fluke accident while cleaning my bathroom was nothing less than serendipity!  Maybe it was God working in unexpected ways or maybe I was always a cause waiting to happen. Either way, I’m just happy to be here.

Sign up today for the National Advocacy Summit in Washington, DC, September 27-28!

A Second Chance

Gary hooks success.

By Gary Stumpf

As with many, I accidentally found my lung cancer.  Last fall, a persistent cough brought me to the doctor (thanks to my wife’s insistence). A CT scan, followed by a lung biopsy, confirmed I had stage 4 adenocarcinoma.  Further testing found a 5 mm “suspicious” area in the front left quadrant of my brain.  By the time they approved and scheduled treatment, a gamma knife procedure, only 45 days later, the tumor had grown to 22 mm!  During this time, I was still going to the gym routinely with no noticeable effects on my health.  This soon changed.

They tested me for specific gene mutations as well as the PD-L1 protein, to see if I was a candidate for immunotherapy treatment. I tested negative on all counts and started IV chemo treatment in December 2016.  After just two rounds of chemo they decided to stop because the cancer had spread to both lungs with multiple tumors and another tumor in my brain.

Although it was incredibly hard, I did my best to maintain a very positive attitude, constantly reminding myself that I was going to beat this disease. I continued to go to work, a way to prove not only to myself, but also to others, that I was not going to let cancer control my life.

In March this year, they decided to go ahead and try Opdivo (nivolumab) immunotherapy despite the fact I did not have the protein PD-L1. Two weeks later, when conducting another gamma knife procedure on the second brain tumor, it was noted that this one had not grown at all, an early sign that the treatment was working.

At the end of March, I decided to retire at the age of 64 in order to focus on quality of life and spend time with my family. I got all my affairs and paperwork in order.

After two months of immunotherapy treatment, a CT scan revealed my cancer was now in remission and showed significant reduction! My doctor was notably surprised at the quick results. After the full four months of treatment, cancer was no longer found in my brain and the tumors in my lungs had shrunk by 80%.

I am sharing my story with you because I recently stumbled across the Lung Cancer Alliance website and commented on a blog post about a survivor story. It reminded me that I am not alone in my fight and that there is always hope.

I am now enjoying my retirement, playing golf weekly and fishing while walking 3-5 miles a day. I, now more than ever, prioritize time with my loved ones and a family trip is in the works.

As with any cancer, it could mutate again and treatment may be ineffective but for now, I count my blessings that I have more time to share my story and, hopefully, provide inspiration to others fighting this disease.  I hope that my story will not only inspire others, but also contribute to research so that more patients have the treatment opportunities that I have experienced.

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

Beat the Heat!

Summer is heating up and that can play a role in cancer treatment side effects. While going through lung cancer treatment, such as chemotherapy, radiation, targeted therapies or surgery, it is important to find ways to escape the heat. Here are some helpful tips to keep you cool in the hotter months.

  1. Stay hydrated! – Staying hydrated is not only one of the most important rules during cancer treatment, but it is also one of the hardest to follow. Many forms of cancer treatment, like chemotherapy and radiation, are already dehydrating and the hot weather makes it worse. Fight dehydration by drinking more fluids, especially ones that replenish electrolytes, like Gatorade or coconut water. And, if you are not already receiving IV fluids during your infusion visits, ask your doctor about this hydration option.
  2. Dodge the Heat – During hot months, air conditioning is your friend! Avoid going outdoors between the hours of 10:00 am and 3:00 pm (the hottest hours of the day) or if the temperature is above 85 degrees. Consider taking your daily walk through a museum or enjoy the quiet and cool of a movie theater for the afternoon.
  3. No Excuses – We know it is tough, but staying active is important during your treatment. Not only will it keep your body strong, but it also helps with treatment side effects, like constipation. Move your daily, weekly or occasional exercise routine indoors where it is cool. Consider joining a local gym for the summer months.
  4. Eat the Right Food – Try eating food with higher water concentration. Eating dense fruits and vegetables (most contain 80-90% water) such as watermelon, cucumbers, tomatoes, strawberries, beets, carrots or celery with a meal or snack is one of the easiest ways to improve your hydration.
  5. Dress for Success – If you do need to go outdoors on a hot day, make sure to dress appropriately. Wearing light colors and loose clothes can make sun time more bearable. Additionally, be sure to protect your skin by wearing hats, using sunscreen and carrying an umbrella so you always have shade.

For more tips or other questions you may have about your lung cancer treatment (or anything else lung cancer related!), call our HelpLine at 1-800-298-2436.