Motivated By Butterflies

The last few days of my mom’s battle with lung cancer were a blur, but one image stuck with me long after the dust settled. There was a picture of a butterfly on the back of my mom’s hospital door that I noticed the day before she passed away. I didn’t think about it until I saw a butterfly on one of my runs after her death.

I was never a runner, but found a motivation inside of me I didn’t know existed when I signed up for Race for Breath in Virginia Beach, a 5K run raising awareness for lung cancer. I trained for that and never looked back, later running in my first marathon with LCA’s Team Lung Love. All through my training, I continued to see butterflies, making me feel even closer to my mom. I knew she was there, pushing me forward and supporting me.

In addition to running, I love to draw. In 2012, I came across the Lilly Oncology on Canvas, a competition that gives those touched by lung cancer an opportunity to tell their story through art, and submitted a pastel drawing and narrative (below) that symbolized my journey through my mom’s passing, my ongoing connection with her and my love of running. I was shocked when I won the contest (allowing me to donate $1,000 to LCA) and even more stunned when they decided to display the drawing as a mural in Indianapolis and Washington, DC! On August 23rd my family and I participated in the DC Hope Mural Project, sponsored by Lilly Oncology On Canvas and the National Coalition for Cancer Survivorship (NCCS), and joined the public in painting the mural of the butterfly pastel drawing in Washington DC to raise awareness, and to honor and give hope to those touched by cancer.  I feel grateful to do my small part to raise awareness for lung cancer in honor of my mom.

butterfly

When a picture of a butterfly appeared
On my mom’s hospital room door, I knew.
The next day,
My mom, a never-smoker,
Passed away from lung cancer.
Months later, I became a runner. I ran away from the grief.
One day, I ran through a path that released butterflies.
From that moment,
I started running through the grief, sometimes melting into tears.
Now I run
So I can feel my mom around me,
In every mile,
In every step,
With every breath.
I draw strength from her to keep going.
The pastel drawing reflects how running transformed me, Freed me from the grief.
I like to think that the butterflies
Crossing my path
Are my mom,
Who is always with me— Especially when I run.

Marie Sarmiento is a lung cancer advocate and based in Virginia.

39.3: A Challenge to Myself and to You

Rachel Bartolo

Rachel Bartolo

This Saturday I am running my very first half marathon. I am not a runner. Never have been, but I decided to challenge myself this fall.

I am going to run three half marathons, in three states in the next three months.

Why, you may be thinking? About five months ago I accepted a job at Lung Cancer Alliance (LCA). This new opportunity brought me from my small hometown of Tecumseh, MI (only 8,000 people) to our nation’s capital.

As part of the Lung Cancer Alliance family, my interactions with patients, survivors and volunteers in the lung cancer community have developed in me a strong passion for the cause and am using that motivation to get me through the three half marathons this fall.

Running is my tool to raise awareness and funds for lung cancer, not only through the national reach of Lung Cancer Alliance, but also within my small community back in Tecumseh.  When I first decided to turn the races into a fundraiser, with a goal of raising $3,000 ($1,000 per race) for lung cancer, my first thought was to reach out to people and businesses back home for help, not expecting a huge response. I should have known better.

After reaching out, it became clear to me where my drive to help people came from; folks back home have displayed a desire to assist in my efforts to raise awareness, and I couldn’t be more inspired. People who I have known for years and years and even people who I don’t know at all have given generously, many because they themselves have lost loved ones to lung cancer.

Through my time at Lung Cancer Alliance, I now know that we don’t all have to take on big challenges to make a difference. You can start to lift the blame, shame and stigma by talking with your friends, family, and neighbors about lung cancer.

This weekend I head to Vancouver, B.C. to run 13.1 miles, a feat I could never have imagined attempting.  Please consider giving today or sponsoring one of those 13.1 miles, in honor of the 160,000 lives we lose each year to this devastating disease.

Stay tuned for pictures from Vancouver and updates on my next two races in DC and Philly!

-Rachel Bartolo, Lung Cancer Alliance, Development and Operations Assistant

Why I Am Walking Philly!

Sarah and Andy in college

Jeff, Sarah and Andy in college

I have run a marathon, woken at dusk to support runners, hosted a 100 person gala, stormed Capitol Hill and my family and I will be attending Lung Love Run/Walk at the Philadelphia Zoo next Saturday. I do these things to raise awareness for lung cancer – a disease that kills more people than the five leading cancers combined – but is underfunded and lacks research, in large part because of the stigma associated with it.

What is my motivation? Andy.

4 years ago my college friend, who never smoked, was diagnosed with stage IV lung cancer.  He died 53 weeks later. Andy Swan, passed away at the age of 35, leaving behind a beautiful wife and 4-year-old son.  Andy was the Prop Master on the set of Criminal Minds and an award-winning director of several independent films.  To me, he was a best friend.

Sarah and her family

Jeff, Sarah and their two sons

Andy and I met at Penn State in 1993 and became fast friends.  He even introduced me to Jeff, to whom I’ve been married to for 14 years.  After graduation, Andy moved to L.A. to pursue his dream of filmmaking while I remained on the East Coast.  Life got busy and we fell out of touch, until 2009 when we reconnected over Facebook. It was a year later he would learn of his diagnosis.

In January 2010, Andy was experiencing some back pain, which was attributed to heavy lifting he had to do as part of his job.  He went in for a CT scan and was shocked to find that he had stage IV lung cancer.  Andy never smoked and was a very healthy young man.   I always thought lung cancer was a smoker’s disease, however 20% of people with lung cancer never smoked and 60% are former smokers, many of whom quit decades ago.

Andy fought bravely for just over a year and on February 8th, 2011, he succumbed to lung cancer with his wife and mother beside him.

In honor of Andy, I do everything in my power to raise awareness for the disease. Even my nine year old son has joined the cause through his lemonade stand sales.

Join me and my family on Saturday, August 16 for Lung Love Run/Walk Philly, as we walk in honor of Andy and all those impacted by the disease. Hope to see you there!

- Sarah Evans-Brockett, Team Lung Love member and lung cancer advocate

Register for Lung Love Run/Walk Philly today!

Find a Lung Love Run/Walk in your community or start your own!

 

Don’t Let Anxiety Stop You

As more people at high risk for lung cancer are screened for the disease, many will discover they have lung nodules. Depending on the size and shape of the nodule, some will be monitored over time and some may need further testing.

Finding out there is a nodule in your lung can make some people anxious. Most nodules are not and do not turn into lung cancer but it can be anxiety provoking to know something is there. And when a nodule needs further testing, it may turn out to be a “false positive.”

In fact, about 15% of people who are screened will need additional imaging or testing to rule out cancer. For those, in the end the nodule is not lung cancer but the time it takes to find out can be filled with anxiety.

It’s important to note that everyone is different and not everyone feels particularly anxious if something is found in their lung. Some people are naturally more anxious and having a nodule found can add to that. For others, it’s a relief to know that their nodule is being monitored or investigated by their medical team.

Other things to keep in mind:

  • The 15% false positive rate for lung cancer. There is a 50% false positive rate for mammograms over ten years. That means that in the course of getting mammograms for ten years, half of the women screened will need to undergo further imaging or testing to rule out breast cancer.
  • There is new evidence about anxiety related to screenings for both lung and breast cancers. Two studies published within two months of each other reached the same conclusion on the effect of false positives in breast and lung cancer screenings: They resulted in no long term anxiety or lower quality of life.

If your scan found something that needs to be watched or tested and you feel anxious about it, here are some things to make sure your doctor does which may help lessen your anxiety.

  • Lay out the follow up plan, including the timing of tests or appointments you will need throughout that period.
  • Help you to understand what your risk of having lung cancer actually is.

Screening for those at high risk for lung cancer is incredibly important. It is equally important to follow through and continue the screening process. Most people who are screened will not have lung cancer but if it turns out you do, or if you have questions about nodules or the screening process, call our toll-free HelpLine at 1-800-298-2436. We are here to help.

Maureen Rigney, LCSW
Director, Community and Support Services

A German Perspective on Lung Cancer

Our summer intern from Germany, Daniel.

Our summer intern from Germany, Daniel.

Let me be honest, I never believed in charitable organizations. When you come from Germany like I do, most things are provided by the state, be it universal healthcare or other government programs that will help you along the way should you ever struggle in life without having anyone to turn to. Therefore, I do believe that we are responsible for our brothers’ and sisters’ well-being and that we should care for one another, and that the government can be a means to that end. So why am I doing a placement here at Lung Cancer Alliance, you might rightly ask. Am I not contradicting myself? I would disagree, and the reason I would disagree is stigma!

Imagine you had a universal healthcare system and government programs that would be equipped to deal with any issues societies and individuals may encounter in their lifetime. These laws and regulations would still be made by people in parliament and governments. This is the crux of the problem, because stigma does not disappear once you enter the corridors of power. It follows you all the way, as I experienced first-hand on my first day on Capitol Hill.

It is this stigma of self-infliction that everyone affected by lung cancer, as well as their family and friends, have to deal with day in and day out. By the way, just to be very clear here, what does it matter why someone has this horrible disease? The all-important question is: does he or she need help? This is the reason I wanted to intern at Lung Cancer Alliance. That is how I grew up, and what my parents taught me: if you have the ability to help someone, in any shape or form, small or big, help those who don’t get much help from anywhere else. And for this reason, I do believe in Lung Cancer Alliance.

-Daniel, LCA Summer Intern

 

 

Continue to help us help others! Consider a donation today.

Somebody

Chris Newman

Lung cancer survivor and activist, Chris Newman

 

Are you or a loved one a lung cancer survivor? Have you lost someone to lung cancer?  Do you feel stigmatized, shunned, invisible, powerless?  Do you feel like you can’t possibly make a difference?   I did.

When I started this lung cancer journey, I had been pretty cynical regarding my ability to affect any kind of real difference.  You see, in December 2009 I became a Nobody.  I became an Invisible.  I was in the local emergency room for pneumonia when a nurse entered the room and informed me that my x-ray showed a very large mass and several smaller ones which was “almost certainly advanced lung cancer” and that “it does not look good.”

She immediately followed by asking if I had ever been a smoker, then coldly responded “Well then, you took a calculated risk and lost, didn’t you?” and walked away.  The emotionally devastating effect of those words was profound. I was to blame for my cancer, having brought it upon myself. I was unworthy of sympathy or compassion. I felt judged, shunned, ashamed, terrified and alone.

I would soon discover that I, and those like me, were also regarded as being unworthy by our own government, as stigma associated with lung cancer translates into a massive inequality in research funding   Our government representatives appear quick to align themselves with funding for breast cancer research, which carries with it high public approval ratings. With lung cancer – not so much.

Isn’t it time we refuse to be treated as invisible nobodies who can be easily ignored.  Isn’t it time we demanded to be noticed, acknowledged, respected? Isn’t it time we shouted from the rooftops that 1 in 14 of us will be diagnosed with lung cancer, that it is the leading cause of cancer death and 2nd leading cause of death from ‘all’ causes, that ‘anyone’ can get lung cancer regardless of their smoking habits!

To lift the crushing weight of stigma, obtain much needed research funds, and see lung cancer survivors treated with the same degree of compassion and dignity afforded sufferers of other cancers, we need to become visible and to be heard!

I saw a quote from Maya Angelou:  “I can be changed by what happens to me, but I refuse to be reduced by it.”  That quote really hit home for me. I realize now that, even in these times, each one of us truly can make a difference, and ‘together’ we can make change. It reminds me of Buddhas’ observance that thousands of candles can be lighted from the flame of a single candle.

Lung Cancer Alliance’s Lung Cancer Summit provides us with a vehicle to do just that – give people who felt they had no voice, no political power, and overlooked by society, a powerful vehicle to come together, be heard and play a part in effecting real change within our legislature.

When I received an email from Lung Cancer Alliance inviting me to attend their summit, I went to their website to read up. I feel energized and empowered by this wonderful opportunity to make a difference, and am grateful and honored to be given the opportunity to participate in meeting with Congress for much needed increased funding for lung cancer research.

It is not only a powerful vehicle to accomplish much needed change, but returns a sense of dignity, value and power to lung cancer survivors like me.

I hope you will join me and add your voice!

Chris Newman, Somebody

Registration for the Summit is open until August 15th! Spots are limited so sign up today! 

You can sponsor Chris and other survivors and help them attend the Summit. Every little bit helps us bring more lung cancer survivors and their loved ones to DC for the experience of a lifetime. Consider a donation today!

Why Volunteering is for Me

Harvey standing outside his house in New York

Harvey standing outside his house in New York

Why Volunteering is for Me
by Harvey Heilbronn

Learning that I had lung cancer, my mind focused inward. I asked myself two questions, “How did I develop this disease and how did I gain membership in a club to which I did not want to belong?”

Passing time changed my thoughts from inward self pity to researching possibilities of help. Many options were found. I contacted organizations such as the Lung Cancer Alliance for information on my disease. People to whom I spoke were extremely helpful and understanding. The information provided made me feel powerful fighting this disease.

Speaking with Lung Cancer Alliance’s dedicated personnel made me want to help other lung cancer patients. I decided to participate directly to improving quality of life. This changed my focus and enabled me to use my experience to benefit others. Helping other lung cancer patients shaped the positive attitude that I have about my situation.

Hopefully my experience will inspire others to be positive in their own fight against this disease. As I made personal progress, I increased the amount of volunteering with this organization. Hopefully I can inspire other lung cancer patients to volunteer.

I became a member of an eight week nationwide telephone panel of people at various stages of this disease sharing their weekly experiences. In cooperation with the panel leader, I volunteered to research lung cancer developments that might be useful to other members. The chance to share information and experiences was invaluable.

Currently, I am a telephone buddy to a lung cancer patient. The chance to talk and share experiences is mutually beneficial. Recently, I participated on a panel sponsored by a large drug company wanting to learn about lung cancer patient experiences in order to target drug research that would benefit the greatest amount of people.

Lung Cancer Alliance knows that I am always available to volunteer in any situation. I will do whatever I can to help make someone’s life with lung cancer better.

Harvey is a Lung Cancer Alliance Phone Buddy

Special Talents of LCA Staff

We have some pretty talented and unique people on staff at Lung Cancer Alliance. We asked everyone one to share their special talent. Check it out!

Kristen

 

 

Kristen, Events & Volunteers Coordinator: Competitive water skiing! I used to compete in college and was ranked 16th in the country in 2011 for Jump at the collegiate level, but now I just water ski for fun.

 

 

 

Kenny

 

 

Kenny, Policy Coordinator: I love musical theater! I played one of the lead roles in RENT when I was in college. I was also in the marching band in 8th grade, where I played the saxophone and xylophone.

 

 

rachel

 

 

Rachel, Administrative Assistant: I love to paint! This photo is of a mural I painted in my old co-op in Michigan.

 

 

 

 

football

 

 

Lanni, Sr. Manager of Events & Volunteers: I can throw a perfect spiral 30+ yards!

 

 

 

photo

 

Edy, Chief Administrative Officer: I am like the dog whisperer …dogs love me (don’t behave but love me)…with 4 great danes (and more if I could have them). I also pride myself on my baking skills.

 

 

commercial

 

 

Kay, Director of Marketing: I have an uncanny ability to recognize celebrity voice overs in commercials.

 

 

thumb

 

 

Gabby, Communications Manager: I am double jointed and have a killer hitch hikers thumb. It has taken me to some pretty interesting places!

 

 

 

 

gumbo

 

 

Tina, Sr. Adviser, Policy & Partnerships: I make PHENOMENAL gumbo!

 

 

 

tara

 

 


Tara, Support Services Manager: Falling asleep on airplanes and yoga headstands.

 

 

 

 

cordelie_3

 

 

Sheila, Special Counsel: I am pretty good at varnishing teak brightwork on our sailboat and playing bridge.

 

 

 

Gymnastics-Sport1

 

Emily, Chief Operating Officer: I competed in the 1979 Pan American Games (pre-cursor to the Olympics) in gymnastics representing the first-ever US Virgin Islands team.

 

 

What is your special talent???

Favorite Scrabble Word: D-A-D

Richard, Michael and Rachel

Richard, Michael and Rachel

Richard, Michael and Rachel

 

 

 

 

 

I will be thrilled to spend Father’s Day with the two most precious loves of my life, my children Michael and Rachel.

When I was diagnosed ten years ago, I was 44 years old and my daughter, Rachel was 14 years old and my son, Michael was 16 years old.  They learned about the fragility of life at too young an age.

With my diagnosis, I realized the hard way, growing old was no longer a guarantee but now would be a privilege. My future was out of my control.  But I knew I would do everything I could to stay alive because my children were too young to lose their dad.

There are people in this world who light up the lives of those around them. Michael and Rachel are two of those people for me. I can’t help but smile when they’re around me because they bring me so much joy. They continue to be my inspiration to do everything I can to beat this disease. I know at times they must be afraid but they continue to have the courage to live their lives to their fullest.

Michael and Rachel have shaped my life and are the fiber of my being. My favorite three letter Scrabble word will always be D-A-D.

Happy Father’s Day to all the dads impacted by lung cancer.

Life goes on…….thankfully.

Love, Richard

Richard  Heimler is our newest Board member. Consider a donation in his honor and in honor of all the fathers touched by lung cancer this Father’s Day. 

To learn more about Richard, his journey and his family, visit Richard’s Rays of Hope.

Let the Insanity Begin!

Jenny White

I was always a fan of Cinderella.  My favorite version included the talking, sewing and conniving mice that helped make her dress and changed the pumpkin into a carriage!

That’s why it’s funny to me that someone told me I’d had the “Cinderella” of lung cancer stories. There was no glass slipper and I already had my Prince Charming but it was magical or more likely a miracle.

In December 2009, I gassed myself with a noxious mixture of ammonia and bleach while cleaning our home bathroom, which sent me wheezing and coughing to my internist.  He didn’t think I had pneumonia but ordered a chest x-ray anyway.  No pneumonia but the radiologist noted a “nodule” in my right upper lobe.  PET scan was negative so obviously I had breathed in something that had calcified and was now showing on an x-ray.  On the advice of my doctor, over two years I had a series of CT scans to make sure there wasn’t anything growing in there.

March 2010 CT scan unchanged.  September 2010 CT … nodule had grown by 30%.  Wuh, what?

One second opinion, two surgical consults and one VATS surgery later, that nodule turned out to be an EGFR gene mutation positive, adenocarcinoma.  I am so grateful that today, over three years later, I am still lung cancer free.  I’m also free of the right upper lobe of my lung but, hey, I learned I still had four others!  Had I not gassed myself, well who knows?

I very quickly learned that I was a minority in the world of lung cancer patients.  I say minority because mine was found in stage 1A.  More often than not, lung cancer is not found until stage 4.  The more I thought about it, the more this fact bothered me.  I felt a passion rising up in me to be a voice for all the voices silenced too soon and too often.

I was so disappointed to find that there was no pink army to join in the fight against lung cancer.  Actually it wasn’t disappointment, it was anger and frustration.  It was at that point that I found Lung Cancer Alliance and partnered with them to bring the first national chapter of a lung cancer organization to Tennessee.  That was August 2012.

For me, the hardest part of creating a lung cancer support community is connecting with lung cancer survivors.  It’s been my experience that the smoking stigma associated with a lung cancer diagnosis causes the smokers and former smokers to retreat while those who were non-smokers don’t know where to turn.  Our hope is to reach everyone whose life has been interrupted by lung cancer with support and compassion and raise awareness in Nashville about lung cancer–the disease.

So I thought, why not raise some awareness by bringing Team Lung Love to the Women’s Half Marathon and 5K to Nashville in September. I envisioned a sea of Team Lung Love runners and more cheerleaders along the course than any other running group!

Then I thought, why don’t I run the 13.1 miles for lung cancer?!?  I ran the Women’s Half Marathon back in 2010.  It was just 10 days before my surgery and I remember thanking my right upper lobe for its service, just in case.  Why not do it again?!?

I’ve walked a half marathon since then.  It took me four hours!  That’s just way too long to do anything!!  My time in 2010 was 2 hours and 45 minutes.  I’m going to try and beat it this year!! Let the training (insert insanity) begin!!

Jenny White, lung cancer survivor
Chapter Director for Lung Cancer Alliance- Tennessee
You can support Jenny’s run here!