“I Decided I Was Going to Live Life”

By Robert Grizzard

I was diagnosed on June 7, 2013 at age 62 with stage IV Adenocarcinoma.  I had been preparing for my retirement when cancer reared its ugly head. I wasn’t ready to give up on life. On my first visit with my oncologist, he said that the best thing I could do for myself is maintain a positive attitude. I decided that I was going to live life.

Cancer has in some ways been a blessing to me. I have learned to relax and enjoy life. Cancer can only take away from you what you allow it. I choose to allow it to be a subtitle in my story not a main event. It does not define me or describe me.

I have had surgery, 16 rounds of IV chemo, four targeted radiation treatments, two targeted therapies, and even six months of NED. At each point I have to adjust to a new normal.  I draw inspiration from people who have written about their stories, other survivors that I have met both in person and online. I am blessed to have a dedicated caregiver and medical advocate in my wife, as well as a support network of family and friends.

In addition to a positive attitude, I maintain hope. New treatments are continually being developed.  Since August of 2016, I have been on a 3rd generation targeted therapy that was only approved for use six months prior. This drug has regressed my cancer, which had spread to my liver and bones, back to my lung and significantly reduced activity there.

After four years I feel better than I ever thought possible at the beginning of my journey.  Through it all I have striven to enjoy life as much as possible and am grateful for each day. I have stood beside my son as his best man, been scuba diving, and recently jumped out of a perfectly good airplane. Some say I have a will of steel, but I decided four years ago that cancer wasn’t going to stop me.

“I Found Strength I Never Knew I Had”

Geri celebrates her 10 year anniversary of lung cancer survivorship!

By Geri Mangas

My story began exactly 10 years ago today, June 4th, 2007, with a right lower lobectomy. I discovered I had stage 2A non-small cell lung cancer during a routine exam by my cardiologist. At the time, I didn’t know anyone survived lung cancer.

I was diagnosed on a Thursday and had surgery on Monday.  Within five days my life was turned upside down and changed forever. I have found strength that I never knew I had. My focus became survival, I had a lot to live for.

In my 10 years of survival, my mother was able to see me regain health, I witnessed both my children get married and experienced the joy of my four beautiful grandchildren. I am blessed.

Each year since 2007, June 4th has marked a milestone for me to celebrate. There have been years that were pretty significant to me, 2 years, 5 years, 7 years, but this is the year I will say I beat cancer and truly believe it. For my 10 year anniversary to fall on National Cancer Survivor’s Day is like icing on the cake.

My advice to someone newly diagnosed is to get a Phone Buddy. Family and friends want to comfort and help but they don’t know what you’re experiencing. Talk to someone that can give you support and hope.  It was one of the best things I did.

 

The Phone Buddy Program is our peer-to-peer program for people with lung cancer. Our Phone Buddy volunteers have either been through or are going through lung cancer treatment and as a result are uniquely qualified to lend support and share information and resources. For many, talking with someone who has been through a similar situation can really make a difference. Click here to learn more! 

My Lucky Break!

Dann (center) at Lung Love Run/Walk Portland.

By Dann Wonser

Eleven years ago, in 2006, I got the luckiest “break” of my life: I broke my ribs.

While that may not seem all that lucky, those broken ribs led to an X-Ray, which led to the discovery of the spot on my lungs that was later diagnosed as Stage III lung cancer.

Lucky me! Because of broken ribs, we caught the cancer early enough for the surgery to remove one of the lobes of my lungs that along with chemo treatments saved my life!

My wife Genevieve and I became grateful for every single day that I stayed alive. And I was not just staying alive – I remained cancer free for almost five years!

That wasn’t my only “lucky break,” however. In 2011, the cancer returned and this time it was Stage IV, and the chemo didn’t even put a dent in it. Luckily, the world of treatment was evolving just when I needed it. I was able to take Avastin, a new chemo maintenance drug, which kept the cancer from growing for a year and a half. Next, I was on another treatment that didn’t exist the first time I went through cancer: A targeted therapy for my EGFR mutation called Tarceva. Another year and a half of successful treatment! When that stopped working, I got into a clinical trial for another new targeted therapy, this time for my T790M mutation: A medication now known as Tagrisso. Thirty-two months later, I’m still having no signs of progression. Yeah!

How lucky can one guy be? I’ve been on three treatments that didn’t even exist the first time I had cancer, which have given me another six years of life. And I’m not done yet!

With all of these “lucky breaks,” I decided that I wanted to take advantage of this gift of life, and make a contribution for the benefit of other survivors in any way that I could. I started a blog (www.dannwonser.com). I began (gulp) public speaking, something I hadn’t done for about forty years, and I began writing a book. And along the way, I found Lung Cancer Alliance.

Here was something I could get actively involved with in different ways. I signed up for Lung Love Run/Walk Portland, which I could do in my own community. As a giant bonus, I met a couple of other survivors who have become friends. I started my own team, Live Lung and Prosper, and invited family and friends to join me. It was important for me to raise awareness, and funds for lung cancer research.

That walk was just the beginning, however. My exposure to Lung Cancer Alliance got me interested in their annual National Advocacy Summit, which involved a trip to Capitol Hill with other survivors and advocates. I got to meet with members of Congress to help them understand how they could further lung cancer awareness and research. Being part of democracy in action got me pumped!

That excitement has made being involved in this year’s Lung Love Run/Walk even more meaningful for me. I understood more of the mission first-hand. This year, Live Lung and Prosper will return, hopefully with even more family and friends by my side.

The first time I went through lung cancer, I had never met another lung cancer survivor, and didn’t know about any online resources. In fact, it was eight years after I was first diagnosed before I ever met anyone who could understand what I was going through first-hand. None of us have to be this isolated anymore! Come join the walk, feed off all that positive energy and meet others who have been through experiences like your own. And a real bonus for me: By starting my own team, I felt tremendous support from the people who chose to join me or donate in my honor. And while so much of the time being a survivor means being on the receiving end of support, by joining the walk, you are making a difference for others.

 

Join Dann at Lung Love Run/Walk Portland in Laurelhurst Park, Portland Oregon on Saturday, June 24th. Learn more!

Click here for more information on the National Advocacy Summit taking place September 27-28, 2017 in Washington, DC.

Cancer Has Allowed Me to Live

Trish Strulson Photo

Trish and George

By Trish Strulson

I am a survivor, fighter, traveler and explorer. Three and a half years ago I was none of these. My daughter, Taylor, had the difficult task of telling me I had lung cancer. I was only 44 years old. The surgeon informed Taylor of the diagnosis after performing my lobectomy. I woke up from the surgery with her standing over me crying.

It was terrible, but, looking back, I now realize it was also one of the most empowering, important moments of my life and it made sense that my beautiful daughter was the one to open that door to the next chapter.

When I was diagnosed, I was married to my husband of 20 years. We had been growing apart for some time and my cancer diagnosis only amplified my loneliness. I am a caregiver by nature and had lived most of my life for other people. My diagnosis gave me the clarity to see I needed to live life for myself and experience all that it has to offer like a trip to Florida or even a night out with friends to play bingo. I was not going to let cancer take that away from me.

Trish and Taylor

Trish and Taylor

As a mother, I found out through my illness I needed to let go. I always steered Taylor through life, making decisions for her and pointing her in certain directions. I worried that she would not be able to move ahead in her life without me. What would she do? Who would come to her aid when she needed help? I realized that she had a lot of growing up to do, but I also knew that she needed the room to blossom that I did not get in my own life.  My illness made me really think more into the future of the “what ifs”. Life was too short to hold back and worry. Both Taylor and I needed to live our fullest lives, whatever that might look like.

My new normal consists of getting from one scan to another, living life by the seat of my pants. I have met my soul mate, George, who I know loves me unconditionally. I surround myself with people who care about me and bring positivity into my life. When I met George I told him about my “never done befores” and we knock those off the list on a regular basis. He took me to Florida a year ago and we both cried as we crossed the state line.

My strength is found within the love I have for my boyfriend, daughter and grand kids. I fight for them and for tomorrow, the day after that and the day after that. I want to live and cancer has allowed me to realize that!

My advice to others faced with this disease would be to fight, don’t feel sorry for yourself and absolutely don’t be a victim. Live every day to the fullest, laugh and love. Get to know your body and if something isn’t right do something about it.

I was a lot of things three and half years ago but today I am a lot more. Now I am a better mother, friend and partner. I am a proud SURVIVOR of lung cancer who is living her best life.

To read more inspiring survivor stories, check out our Facebook page

 Have questions or just need someone to talk to, call us at 1-800-298-2436 or email support@lungcanceralliance.org

Life Lessons From a Nurse

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April Plank, DNP

By April Plank, DNP, The Center for Lung Cancer Screening and Prevention, Stony Brook Medicine

I realized at a young age that I enjoyed working with people.  This rather broad statement could have led me down endless career paths. My decision to choose the nursing path was easily made after realizing that a nursing degree, while single in its title, yields endless opportunities.  During my years of schooling and internships, I came to discover two common factors that crossed all specialties:  Years of experience trumps book knowledge AND kindness matters.

I chose a full-time position in the medical intensive care unit where I gained experience with critically ill patients, including those with cancer. My notion of cancer being a terminal disease where the medical team is often powerless dissipated as I learned the many ways that a healthcare professional can impact a patient’s life.

I recall quite vividly my first patient with lung cancer.  Ms. E (as we will reference her here) was a 37 year-old heavy smoker who went on life support after she become septic during chemotherapy.  She was weak and frail with a beautiful blue head wrap.  During one visit, she asked me if I knew the song “Amazing Grace” which I would later learn was her father’s favorite song.  I told her that I did know the song well, as it was a regular during the Sunday church service I attended.  She explained that her father was coming in from out of town and she hoped that I would sing it for them during his visit. This request was a surprise but it wouldn’t be the last time that I would be asked to do something “outside of the box.” Shortly into her father’s visit, I heard the familiar sound of Ms. E’s call bell rang requesting the song.  I was joined by three ICU colleagues in the most moving and difficult song as Ms. E mouthed the words as we sang.  There was not a dry eye in the room and shortly after Ms. E. fell into her last sleep.  I wept endlessly as we prepared her for her eternal rest.

As I cried, asking “Why?”, I realized that I might never know all the answers.  I also became keenly aware that while we (nurses) might not always be able to cure patients of their disease, we are ALWAYS able to help make the journey easier and the burden lighter.

That evening, singing to Ms. E and her father, I realized that in addition to all the medications and care that people with devastating diagnoses needed, one thing that all of us in the healthcare profession could offer was HOPE.  Time and time again, I have seen the power of that hope in the eyes and lives of my patients dealing with a cancer diagnosis.

I focused on pulmonary diseases including lung cancer from that time on.  I later subspecialized in lung cancer as I recognized that the more focused I could be, the more expert I would become thus positioning myself to make the greatest contribution to those affected by the disease.

I am happy to report that the years that have passed since singing “Amazing Grace” have brought many changes in the lung cancer treatment arena.  New drugs and therapies as well as new treatments have emerged providing evidence that there is every reason to believe that progress is here to stay.  Lung cancer, which was once thought to be a terminal disease leaving us powerless, is becoming one that can be managed and people are living longer after diagnosis. I take great joy in informing lung cancer patients that HOPE prevails. I have watched in awe as many defy the odds and I enjoy sharing those stories with other’s fighting the disease. In addition to treatment options for those diagnosed, lung cancer screening guidelines now provide opportunities for those deemed at high risk for lung cancer to undergo screening for lung cancer with hopes of increasing early detection of this disease.  This coupled with smoking prevention initiatives in schools, smoking cessation education and environmental hazard awareness will also change the tide with a decrease in the burden lung cancer.

Additionally, I am passionate about helping patients through the guilt and shame that tends to accompany lung cancer as the “smoking cancer.”  They deserve the hopeful news that smoking cessation, even at the time of diagnosis, can result in better response to treatment, increased survival time and decreased rates of lung cancer recurrence.  I encourage every patient to channel their grief and regret for smoking to the mission of raising awareness among the millions of youngsters who are vulnerable in getting caught in smoking addiction.

Here are my words of advice to patients:

  • Never lose hope! And as one of my patients once said, “Live life to the fullest”.
  • Be sure to communicate with your healthcare team. It may be helpful to write down your questions and concerns so as not to forget during your office visits.
  • Don’t be shy about seeking a second opinion.
  • If you are, or were, a smoker; don’t dwell on the past but recognize that each day that the sun rises is a fresh start.
  • Read about patients who have defied the odds of this disease. Know your options for treatment and be sure that all of your questions are answered.
  • You are not alone in this journey. Allow your family, friends and healthcare team to support you along the way.  Consider joining a support group where you may meet someone who is many months or years into the diagnosis and can encourage you as you undergo treatment.

Much progress has been made in the lung cancer arena.  I speak on behalf of many who are honored to work in this field in saying we will not stop until we have found a cure.  Keep the faith and be forever HOPEFUL.

 

Coping Series: Digestive Problems

dig-issuesLast week we held the second discussion in our Coping Webinar Series, focused on the most common side effects of lung cancer treatment, digestive problems, including nausea, vomiting, constipation and diarrhea.

We sat down with Director of Palliative Care at Carolinas Healthcare System, Niki Koesel ANP, ACHPN, FPCN and oncology and palliative care doctor at UC San Diego Moores Cancer Center, Eric Roeland MD, FAAHPM to determine what causes common digestive issues, how to manage them and more importantly, how to prevent them.

Key Takeaways

  • Prevention is key! There are medications that can help prevent you from feeling ill.
  • Any changes or discomfort should be reported to your treatment team right away, whether experienced at home or in the infusion center. Your team cannot help you unless they know what is going on.
  • You are not alone! 70-80% of lung cancer patients experience some type of digestive issue when going through chemotherapy.

Nausea & Vomiting

Nausea and vomiting are the #1 side effects of patients undergoing chemotherapy

Why is it important to address?

  • So you can feel better! Your treatment team has the tools to help.
  • It can interfere with the processing of chemotherapy
  • It can cause unplanned office/hospital visits

Tips:

  • Drink plenty of fluids
  • Regarding food, “If it looks good and you can keep it down, go for it”
  • Wear clothing that is loose fitting around your waist area
  • Be aware of your triggers (e.g. odors)
  • Try relaxation techniques

Constipation

What does it mean? Any changes in how often you go to the bathroom or changes in the comfort of your stool.

Why does it happen?

  • Some treatments or medications can cause constipation (e.g. anti-nausea meds)
  • Electrolyte imbalances (e.g. dehydration, elevated calcium)
  • Decreased mobility

Talk to your doctor about the right medications for your situation. Additionally, here are some non-medication treatment tips:

  • Get regular exercised. Keep moving!
  • Dietary modifications (e.g. increased fluid and fiber intake)
  • Medication review and rotation if appropriate

Diarrhea  

What to do if you have diarrhea:

  • Maintain hydration
  • Protect perianal area
  • Treat infections
  • Ask your doctor about “overflow diarrhea” caused by constipation
  • Consider dose reduction or delay

Tips:

  • The same amount should go in as comes out; drink plenty of clear fluids and avoid caffeine and milk products
  • Avoid greasy/fatty foods, raw fruits and vegetables and foods high in fiber

Click here to view the full webinar video.

For any questions about lung cancer and treatment side effects, call our HelpLine at 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.

Four Easy Ways to Make a Difference This May!

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It doesn’t take much to make a big difference in the life of someone impacted by lung cancer. Here are a couple easy ways to put a voice and a face to lung cancer in your local community and beyond!

  1. Send a Letter to Your Local Newspaper – Your story is unique and should be told. Not only will it raise awareness for a disease that is overlooked, but it will also provide hope and inspiration for those going through a tough time. Here is a sample letter!
  1. Get Social – Social media, like Facebook, Twitter and Instagram, make it easy to spread the word about lung cancer to your friends and others. Share your story with your online communities or we can do it for you! If you would like to be featured as a “Survivor Spotlight” please send a photo and quote to ggeier@lungcanceralliance.org.
  1. World Give Day – This year World Give Day lands on May 3rd. Giving a monetary donation is one of the easiest and most impactful ways to help someone touched by lung cancer. Share the love by honoring a loved one with your donation.
  1. Create a Fundraiser – Turn your favorite activity into a fundraiser! Whether it’s a weekly book club or running a marathon, do it for a cause. Now it is easier than ever to create a page, share it with friends and track your progress. Here’s how to get started!

Questions or having something else in mind? Let us know! Email info@lungcanceralliance.org.

What We’ve Done These First 100 Days and What You Can Do!

hands-clappingfinal

By Elridge Proctor, MPA, Director of Health Policy

Spring is here and, yet, we are only just beginning the most serious part of Congress’ work which includes establishing budget priorities for this year. Furthermore, Congress will need to decide on funding for the rest of Fiscal Year (FY) 2017, then address the President’s upcoming FY18 full budget, which is scheduled to be released in May. Although, there’s a long road ahead and much remains to be done, we have already made some great strides forward for the lung cancer community.

Here’s a look at what we have accomplished thus far:

  • At the start of the new 115th Congress, LCA focused its first 100 days action plan on the potential impacts of the President’s and Congress’ effort to repeal the Affordable Care Act, which remains the law of the land, after the withdrawal of the “The American Health Care Act.”
  • Guided by patients, LCA developed and issued our Healthcare Principles for a patient-centric healthcare delivery system to Congress.
  • In addition, LCA partnered with the American Lung Association (ALA) along with 18 other public health and patient advocacy groups in a letter urging Congress to “Put Patients First” in healthcare.
  • LCA led direct advocacy efforts for federal research funding and healthcare through alerts on our Lung Cancer Action Center.
  • LCA in coordination with US Representatives, Rick Nolan (D-MN) and Frank LoBiondo (R-NJ), re-established the Congressional Lung Cancer Caucus and recently held The State of Lung Cancer Today, briefing on Capitol Hill.

But we’re not done. Going forward, as important stakeholders in the ongoing healthcare policy discussions, you can help elevate the cause and amplify the voice of the lung cancer community by taking action on these critical issues:

Here’s what you can do!

The road ahead remains uncertain because healthcare policy priorities continue to evolve.  To stay informed and take your seat at the table, join us in Washington, DC from September 27-28 for the 2017 National Advocacy Summit focused on advancing patient-centric policies in the 115th Congress.

For more information or to send us your thoughts and questions email Policy@lungcanceralliance.org.

A Message from LCA’s Board Chair

Cheryl-Healton

Cheryl Healton

By Cheryl  G. Healton, Dr. PH

Nice to meet you!

Although I just took the role of Board Chair, the truth is, I’ve been here alongside you for over a decade since I joined Lung Cancer Alliance’s Board of Directors in 2005.  I’ve spent my entire career working on a variety of health issues including tobacco control, substance abuse and AIDS, public education and health policy. Currently, I serve as Dean of the College of Global Public Health at New York University and hold an academic appointment as Professor of College of Global Public Health.

Prior to joining NYU, I devoted 14 years leading Legacy (now known as the Truth Initiative), as President and CEO of the ground-breaking national public health foundation that has made significant contributions to reducing the youth smoking rate from 23% in 2000 to the current low of 6%.

The deadly toll of tobacco is something I know well, both professionally and personally.  As a result, lung cancer – the nation’s number one cancer killer – is a disease about which I am well informed, but it goes deeper than that.

I am also a former two-plus-packs-a-day smoker who finally quit on Mother’s Day in 1992. While I’ve lost four family members to lung cancer and many more over the years due to tobacco-related causes, it was knowing I was addicted to nicotine myself that nudged me to quit.

My public health — and personal — background give me a unique perspective on dealing with this disease, but I also know that everyone who has been touched by lung cancer has their own personal connection. The bottom line though is that we’re all in this fight together — people like me who quit smoking, people who still smoke and people who have never smoked a day in their lives.

That’s why I’m honored to assume the position of Board Chair with Lung Cancer Alliance because it gives me a leadership platform to fight for meaningful change in the pursuit of fulfilling LCA’s mission of saving lives and advancing research by empowering those living with and at risk for lung cancer.

To be sure, it’s an amazing time in the fight against lung cancer. Never before have so many treatments been available and early detection opportunities exist to catch this disease at its most treatable stage.  But there is so much that can and needs to be done. That’s why I enthusiastically accepted this important appointment and why I eagerly look forward to seeing what we will accomplish next.

 

 

 

Volunteer. The Reward is Twofold.

Michelle and her daughter pose with the Philly Phanatic at Lung Love Run/Walk Philly.

Michelle and her daughter pose with the Philly Phanatic at Lung Love Run/Walk Philly.

By Michelle Russo

Up until the fall of 2010, I had never heard of Lung Cancer Alliance (LCA).  I was still in the throes of my husband’s sudden onset of lung cancer and his death within 39 days of diagnosis.  Lou passed away on July 9, 2010 at the age of 57.

Later that year, in November, my daughter called to tell me that she was headed to a lung cancer vigil in Denver, CO where she was attending graduate school.  When I hung up the phone I immediately googled lung cancer vigils.  This is how I found LCA.

Before I knew it, I was in Washington, DC for the National Advocacy Summit.  I remember walking into a large reception hall where everyone was sitting at a table listening to a speaker and then they began to pass the microphone. Each person was telling their own story about how lung cancer impacted their life. I remember thinking how almost everyone was a family member; there were very few survivors.

Michelle and Lou

Michelle and Lou

Since then I have attended more Summits, hosted many Shine a Light on Lung Cancer events each November, ran fundraisers and coordinated the Lung Love Run/Walk Philly 5K  for three consecutive years (our 4th coming up on April 22nd!).  Most importantly, I have raised awareness for this horrific disease and guided individuals to the resources they need in their own fight.  I have been there to support patients and families.  I have become an advocate!

My husband was always very proud of me. He would brag about my accomplishments and I would blush.  I know that once again I have made him proud.  I continue to volunteer in his memory but also for everyone still fighting lung cancer.

In the six short years that Lou has been gone, I am amazed at the changes in the lung cancer community. When I attend a Summit now I sit in awe of all the survivors in the room! However, we have a very long way to go!

My affiliation with LCA has changed my life. When I needed to change my sorrow and negativity into something positive, LCA provided me with that opportunity. I would encourage everyone to reach out and volunteer or participate in an event. The reward is twofold; you are helping change the face of lung cancer AND you are receiving an immeasurable feeling of fulfillment.

Join Michelle at Lung Love Run/Walk Philly on April 22nd at the Philadelphia Zoo. Click here to learn more!

Interested in attending the 2017 National Advocacy Summit in Washington DC this fall? Click here!