Above and Beyond Series: Why I Do What I Do

I first met Don and Debbie Parker on a cold winter day when they came to the Lung Cancer Clinic at OSF Saint Francis Medical Center (Peoria, Illinois) where I work as a Clinical Nurse Specialist. Don was a quiet man, who was very concerned about his illness. His fiancé Debbie, who did most of the talking, mirrored Don’s kind, loving demeanor. Like so many couples I help in my job, after our first meeting most of my contact with Don and Debbie happened over the phone. I did my best to make sure all of their needs were met as they focused on supporting each other on their cancer journey.

Typically, the Lung Cancer Clinic process begins by bringing together a team of lung cancer specialists to formulate a treatment plan for a newly diagnosed lung cancer patient. Once a plan is in place, the patient is brought in to meet with the Nurse Navigator, dietician and any of the physicians that would be a part of their plan.

Don scheduled his Lung Cancer Clinic appointment at 8:00am. The meeting only lasts about an hour, so I had no problem, when he and Debbie told me they were planning to exchange their vows and say “I do” at the courthouse at 1:00pm that same day.

Debbie and Don getting married, thanks to the help of Jodi (back right).

Debbie and Don getting married, thanks to the help of Jodi (back right).

That morning, as I took Don’s vitals, I noticed his heart rate was elevated and his heart rhythm was irregular. Although he didn’t appear to have any symptoms of something wrong, this alarmed us.  After some initial testing, Radiation Oncologist, Dr. Mackenzie McGee, recommended further evaluation in the ER. Don’s issues were due to his tumor which had wrapped around major heart vessels.  Even after hearing this, Don made it clear that he was not going to miss his wedding. That was when I knew I had to come up with another plan. If they couldn’t make it to their wedding, I was going to bring their wedding to them in the Lung Cancer Clinic.

After explaining my plan to Don, Debbie and the medical staff, everyone agreed this was a great idea given the circumstances and we got to work! Debbie called their marriage witness, while I got on the phone with the Peoria County courthouse, since the marriage certificate was issued for a ceremony in a different county. The courthouse personnel were happy to help as well after learning about this unique situation. Word spread quickly throughout the entire hospital and within an hour and a half the wedding was planned and underway!

The most important thing to remember about this entire story is that here is a patient that just had the rug pulled out from underneath him hearing about the extent of his disease, staging and treatment plan and all the sadness and fear that it holds (the worst day of his life) then had to change his focus to getting married and all the joy that brings (the best day of his life) all within a matter of 1 ½ hours. I cannot imagine the roller coaster of emotions. This couple needed me in more ways than one. That is why I do what I do.

To read Don and Debbie’s perspective on their wedding day, click here!


Above and Beyond Series: Throughout the year we will be highlighting healthcare professionals, volunteers and survivors who go above and beyond to make someone else’s life better.


Living Life AC (After Cancer)

By Deborah Benton, 15 year lung cancer survivor

15 year lung cancer survivor, Deborah Benton.

15 year lung cancer survivor, Deborah Benton.

It’s a new year! For me, it is the year of my 15th birthday. It is really the year of my 59th birthday, but thanks to lung cancer, my life has been divided into two parts, BC (before cancer) and AC (after cancer). I was diagnosed with stage IB adenocarcinoma, on July 27, 2000 (my 44th birthday) and it rocked my world to its core. Within a week of diagnosis I had a lobectomy. I had no chemo or radiation and I have been cancer-free since then. The physical healing was easy, the emotional healing still continues. After surgery, I was sent off to “live my life”, only I had no idea how to do that anymore. I quickly found there were no support groups and pink ribbons for lung cancer. Not only that, but there seemed to be no compassion either, until I met the people at Lung Cancer Alliance. They were my salvation and I credit at least part of my survival to them. Each year gets easier, but the fear of recurrence really never leaves me. There is always that little voice in my head saying “Don’t get too complacent.”

When I was diagnosed I could not find a single person who had survived lung cancer long term. The good news is now I know lots of them! One of my wishes is that my story of survival can provide hope to all those who have to hear the words “You have lung cancer.” My other wish is that people realize there is no one way to survive cancer. Some of us speak with unbridled optimism and some of us never speak of our experiences at all. My method of survival involved a more pragmatic approach and I was often accused of not being grateful and of being pessimistic. Believe me neither of those accusations is even close to the truth. Survival is personal and, as with other aspects of life, we all do it differently. And you know what, even though I was not the most optimistic survivor, I am still here—healthy and happy! While it is probably far easier for most of us to listen to the optimist, it may be far kinder to give 1, 2, or dare I say even 5 minutes, to the person still grappling with recovery from a life and death diagnosis.



Test, Fix and Save a Life in January for National Radon Action Month

By Larainne Koehler

The hustle and bustle of the holidays is over and we are having some of the coldest weather in years.  Our doors and windows are closed against the cold, and that’s one of the first steps in getting a good radon test.

By now some of you are asking  – “What is radon and why do you need a test for it?”  Others are remembering that they have heard about it but haven’t taken action yet – what are you waiting for?

Larainne Koehler_EPA_Radon Blog_1.15.15

Larainne Koehler is the Radon & Indoor Air Coordinator for the U.S. Environmental Protection Agency Region 2.

Radon is a radioactive gas that comes from the decay of naturally occurring radium and uranium in the earth.  It is the second leading cause of lung cancer overall and the LEADING cause in non-smokers. The  Environmental Protection Agency (EPA) estimates that as many as 21,000 lung cancer deaths a year are caused by radon.  Radon is colorless and odorless, so the only way to know if your home has a problem is to test for it.

EPA and the U.S. Surgeon General recommend testing all homes below the third floor for radon and if the levels are high, take steps to lower them.  Now you may be thinking   – “How do I find a test?”   Ready for that one – Do-it yourself test kits are available online and at many home improvement and hardware stores.    Just follow the instructions that come with the kit and then send it back to the lab for analysis.  New York State, where my office is located, has a special test kit program for residents. To see if your State has a test kit program, you can find your State Radon Contact at http://www.epa.gov/radon/whereyoulive.html

Click here to get more information about radon and how you can help to spread the word. 

Check out this informative (and entertaining) video about radon and testing for it.

Take a step for a healthier and safer 2015 and test your home today.

Larainne Koehler is the Radon and Indoor Air Coordinator for the U.S. Environmental Protection Agency Region 2 and has been working on radon since she joined EPA in 1984.

(Please share this post. However, please don’t change the title or the content. If you do make changes, don’t attribute the edited title or content to EPA or the author.)

2015: A Look Ahead


As we begin our 20th year serving our community, we look ahead to 2015 with excitement and the knowledge that many lives will be saved.

Our community is stronger than ever! Survivors and loved ones are sharing their stories and making their voices heard. More than 250 lung cancer events are anticipated throughout the country this year alone. Federal research funding will rise to the highest levels in history surpassing $100M.

Here are some other notable things to look out for in the coming year!

Lung cancer screening coverage is here! – Under the Affordable Care Act, lung cancer screening for those at high risk is now an Essential Health Benefit requiring private insurers to cover screening in 2015. We are also on the cusp of a final decision from Medicare that should call for coverage for those at risk. Find out if you are at risk for lung cancer today by answering these simple questions. Talk to your doctor about your risk and possibly getting screened.

This year marks our 20th Anniversary! – As we celebrate our 20th year, we want to celebrate yours as well. If you or someone you know is a 20+ year survivor we want to hear from you and share your story to inspire others! If you are interested, please email Gabby.

Cherry Blossoms and the 7th Annual Lung Cancer Summit in April! – This April, as tourists from around the world come to Washington, DC to enjoy the Cherry Blossoms, we will be hosting over 100 advocates and provide the training necessary to take our message of hope and fair research funding to Congress! Registration will open next week!

Lung Love Run/Walk – Lung Love Run/Walks are taking off nationwide. Join us to move with purpose, while raising awareness and funds for lung cancer in your community. Below are upcoming events.

  • West Palm Beach on March 7
  • Atlanta on April 11
  • Philadelphia on April 25 (website coming soon!)
  • Portland, OR (coming this spring!)

Our 20th year is going to be the best yet!


Carpe Diem

By Mike Suskin

My dad, Adrian Suskin, was the youngest of three children, and was born on August 23rd, 1956 in Bulawayo, Zimbabwe to two South African parents. He immigrated to Canada at the ripe age of 18 where he eventually met my mother. After a series of moves, we ended up in Baltimore when I was about 8 years old, and it has been our home ever since.

Adrian, Mike and Mike’s sister, Robyn, spending time in their dad’s homeland of Africa.

I consider my dad a success story. His first job was cutting cabbage at a grocery store. By the time he was 17 he started taking flying lessons, but was struggling to make ends meet. Ultimately, his hard work and sticking to his dream of flying paid off. My dad became a Senior Captain with UPS and remained with the company for over 20 years. He and my mom gave my sister and me such a great start in life; something I will never forget.

In December 2008, he had recovered from a hip replacement surgery and was back in the cockpit, but developed a persistent cough. He got a chest x-ray done soon after, just to be safe. I won’t easily forget the day in March of 2008 when I got back from tennis practice to hear that he was diagnosed with stage 3B non-small cell adenocarcinoma. All I can remember is him saying over and over again that “[he] was going to die”. All we could do was be there for him.

He started his radiation and chemotherapy and for several years his cancer remained stable with no spread. Sure enough, after one too many chemo breaks, the cancer started to spread to his bones and liver in June of 2014. He had to go off of chemo and switch to an experimental trial drug soon after. Unfortunately, his condition ultimately took a turn for the worse. Just one month ago today, he passed at a hospital in Baltimore.

With the exception of the last few months of his life, he treated his cancer with such a carefree attitude that it just rubbed off on everyone else. He would frequently take trips back to Zimbabwe to work with ZimKids, an orphanage that he helped fundraise and build. He went to two FIFA World Cups in Africa and South America. It was like the cancer was a non-issue.

Adrian often traveled to Zimbabwe to work with children from ZimKids.

After he passed away, I instantly found myself gravitating towards lung cancer fundraising. After some brief research on what charity would be best, I happened upon the Lung Cancer Alliance.

Unfortunately, many people view lung cancer as some sort of “righteous comeuppance” for people who were heavy smokers. My dad was never a smoker. It is also drastically underfunded compared to other cancers. We need to all work together to raise awareness about this horrible disease, and eventually find a cure.

As my dad always said, “Carpe Diem.”

-Mike Suskin

Click here to visit The Adrian Suskin Lung Cancer Memorial Fund homepage and help Mike reach his goal of $25,000 in the fight against lung cancer.

Top 5 for Lung Cancer in 2014

2014 Top 5 LC Milestones_image

This has been a groundbreaking year for lung cancer advancements, not only for our community, but the greater cancer community. Below are the top five milestones that have been reached for lung cancer in 2014.

  1. Centers for Medicare and Medicaid Services (CMS) Recommend Covering Lung Cancer Screening
    • The November 10th CMS draft decision is the last major piece in a long series of validations, including the United States Preventive Services Task Force (USPSTF) final recommendation for annual lung cancer screening for those at high risk, reaffirming the lifesaving benefits of screening. The final decision, which almost always reflects the draft recommendation, will be released on February 12, 2015.
  1. National Cancer Institute (NCI) Issued New Scientific Framework for Small Cell Lung Cancer
    • On July 1st NCI presented to Congress a scientific framework that lays out important steps needed to make advances in small cell lung cancer, one of the most lethal forms of the disease. The report was mandated by the Recalcitrant Cancer Research Act of 2013.
  1. Congressionally Directed Medical Research Program (CDMRP) Approved Another $10.5M for Lung Cancer Research
    • On December 13th, CDMRP approved an additional $10.5M towards the Lung Cancer Research Program, bringing the total federal research funding for lung cancer to $89.5M.
  1. Kentucky LEADS (Lung Cancer. Education. Awareness. Detection. Survivorship) Collaborative Launches
    • On November 12th the University of Kentucky, the University of Louisville and Lung Cancer Alliance partnered to lead the first of its kind project to reduce the burden of lung cancer in the state of Kentucky, which has more cases of lung cancer than any other state.
  1. Activation of groundbreaking clinical trial for Squamous Cell Lung Cancer, Lung Cancer Master Protocol (Lung-MAP) trial
    • On June 16th Lung-MAP, a multi-drug, multi-arm, biomarker-driven clinical trial for patients with advanced squamous cell lung cancer, was announced. This innovative approach to clinical testing is poised to usher in one of the most dramatic advancements in cancer research that we have seen in years.

We know 2015 is going to be an even bigger year so stay tuned!

Jennifer’s Story

Jennifer with her husband and son

Jennifer with her husband and son

By Brent Schweisberger

The phone rang on a Friday afternoon. “Hi, Jen.  What did they find out?”

“Dad, they told me I have cancer.”

Any parent’s response would be similar – I pulled over the car immediately, tried to make sense of what Jennifer was stammering through her tears, and in complete denial that lung cancer could strike a 30 year old never-smoker, faced this cruel disease head-on.

For three years now, our family has traveled on what Jennifer so aptly dubbed the “speeding cancer train.” We learned that when there is no knowledge, by definition all you have is fear.  As knowledge slowly begins to build, fear begins to dissipate.  As fear wanes, hope grows, and resolve becomes easier to justify. We know more about small cell neuroendocrine carcinoma of the lung than we ever wanted to learn.

It seemed so easy at first.  After the diagnostic tests, I was excited for Jennifer on her first day of chemo.  It was a watershed moment, when her cancer finally found an adversary.  That day, the healing would begin, and we found a glimmer of hope.  By the end of the first round of chemo, Jennifer reported a lessening of the pressure in her airways.  Could it be working that quickly?  Was cancer miraculously giving up after only one round?  Optimism grew.  Jennifer proclaimed she was going to kick cancer’s butt.

Brent and Jennifer

Brent and Jennifer

On a gray December day later that year, having endured four rounds of chemo and weeks of radiation, her radiologist called with the most recent scan result:  the mass had completely resolved.  It was over!  As she drove past a church, a lone bagpiper was playing a simple but familiar tune which tumbled onto the street:  it was Amazing Grace, indeed.  As her tears flowed, Jennifer knew it was a sign from her beloved Grandmother who had passed a few years before.  “It’s not your time yet, Jen.”

After some preventative treatments and scans, Jennifer cooked, gardened, worked, enjoyed her marriage, and embraced life.  Soon, she even had hair again.

Fifteen months later, Jennifer and her husband presented us with fabulous news.  We were finally going to be grandparents!  We celebrated the coming arrival and planned all of the associated events.  But we didn’t plan for more cancer.

Months later, a lump appeared in Jennifer’s lower back and biopsy confirmed the neuroendocrine cancer had returned.  Scans showed it was also in her liver, and she was 22 weeks pregnant.  Now we had two lives directly impacted, and treatment was challenging.  After many consultations, chemo began anew, with a cohort of specialists monitoring every aspect.

By late in the pregnancy, the baby was no longer growing.  Chemo had impaired the placenta, and the decision was made to bring the baby early.  As I held our new grandson the first time, I recalled Jennifer’s arrival, our firstborn, and felt again the quiet way she forever altered my life that day.  Now we needed to get her healthy once more.

Chemo restarted, and radiation was needed for her liver.  For some time, things looked good.   But then, the new bomb:  “Dad, there’s no way to say this other than to just lay it out there.  I have a new tumor and it’s in my brain.”

It wasn’t a very pleasant ride home from work that afternoon.  I prepared to break the news to my wife.  A long hug and some tears later, we talked to Jennifer and resolved anew to beat this.  We knew the odds were longer, but Jen was still going to kick cancer’s butt.  If she says she is, we aren’t about to quit on her.

It’s a long journey, but we walk hand in hand with Jennifer, her two sisters, and their families. Her battle is not yet won, but our family stands steadfastly together in unquestioned support of our brave young woman.

Never Stop Creating

Jon and Robyn on their wedding day

Jon and Robyn on their wedding day

By Robyn Young

In 2013, my boyfriend of eight years was diagnosed with Stage IV lung cancer. He was 27 years old.

I didn’t believe it. I thought it was a lie. At first, because of his age, he was misdiagnosed with a different cancer. He underwent chemotherapy. It didn’t work. At our follow up scan, the one that was supposed to tell us he was 100% cancer free, we found out, instead, it was lung cancer.

Lung cancer is a terrible disease. What makes it worse is the stigma associated with it. Before our diagnosis, I believed only elderly people who had smoked for decades could get lung cancer. I was wrong. America is wrong in the way lung cancer is depicted. Young people, who have never smoked a cigarette, can get lung cancer too.

Since, we have met many young people, some around our age, some younger, who have the same disease. We are all fighting for our lives. I ask, no, I beg, you to join us.

Jon and I met in art school. He was a filmmaker and I, an actor. The perfect love story. We have been chasing our dreams of making movies ever since! We weren’t married when he was diagnosed, but that soon changed and we were united in marriage on the exact anniversary of our very first date.

Just because lung cancer is a part of our lives, doesn’t mean we have to stop creating. In fact, we create more now. Just this past summer, Jon wrote and directed a short film entitled Nirvana: a short film about cancer, based upon his experience. The film is a love story between the patient and caregiver, between life, death, and the possibilities that lie in the unknown. He is currently editing the film. In addition, we spend most of our time creating: developing new ideas, writing, filming, and more.

Nowadays, we don’t plan for the future, but strive to live in the moment. Because of new targeted therapy medications, created not too long ago, Jon is doing very well. For this, I am most grateful.

Lung cancer is severely under funded. In comparison to less deadly cancers, the statistics are unacceptable. Science and research have brought us to a very exciting time in medicine. Because of this, I ask for more awareness and funding for lung cancer. When this happens, the doctors can keep creating new drugs that will one day cure lung cancer. I believe it is possible in our lifetime. This cause is so important to so many. Please stop ignoring lung cancer. My young life depends on it because the person I love depends on it. Your life may depend on it too one day.

To learn more about Nirvana: a short film about cancer CLICK HERE: https://www.facebook.com/pages/Nirvana-a-short-film-about-cancer/598777076879059

To DONATE to lung cancer research CLICK HERE: http://www.lungcanceralliance.org/ways-to-give/

Keeping Time

by Karen Tollefson

The Time Keeper for Karin Tollefson's Blog 2014

The Time Keeper

This painting hung in our favorite southern California gallery and it drew both my husband and me to it each time we visited. Soon it became a favorite part of our collection.  The Time Keeper, as it was titled, was nothing more than a special piece of art hanging on the walls, until one day the irony of trying to “keep time” finally caught up with us.

A cancer diagnosis will do that to you; change your point of view.  Time is not something to be kept; it can’t be stopped, preserved or reclaimed.  When you are told you have cancer, time becomes a privilege, and with my family being handed two cancer diagnoses within a few short years, this painting became a poignant reminder that every moment matters.

When my mother was told she had lung cancer, it was as if time stood still and was racing all at once.  There was an urgency to act, start therapy, fight for her life, but all we could do was “hurry up and wait.”

Life as my mother knew it was gone in an instant, but it took time for her journey as a cancer patient to commence.  It was three months from when I first suggested her persistent cough might be more than allergies to when her treatment would begin.  It felt like a lifetime and it felt like no time at all.  Now, it strikes me that one month about lung cancer means something entirely different to a person living with cancer.

This month’s recognition is an important milestone, raising awareness, creating advocacy and generating momentum.   Lung cancer is gaining much-needed attention. For me, having lost a husband to leukemia and a mother to lung cancer, I am proud to speak out for those who can no longer advocate for themselves.

Long before I was ever personally touched by a cancer journey, my career was in oncology research and development. And now, with the lines of my private and professional life irrevocably crossed, my career has become all too personal.  I am reminded daily of the urgency for what we do and although continuous innovation has resulted in dramatic improvements in patient care, we still have far to go.  Oncology research is not a simple endeavor and by its very nature, cancer research has proven to be a cumulative process, with each advance building on that of a previous discovery.  It takes time.

As November’s spotlight on lung cancer comes to a close we should acknowledge the progress made in understanding the underlying biology of the disease and recent treatment advances.  Still, lung cancer remains the leading cause of cancer related mortality in the world and we have far to go to develop innovative treatments, improve early detection and eliminate stigma. We must keep the urgency- people living with lung cancer need us, far beyond November.  After all, there is a lot of living that can occur in a month when you have the gift of time.

I Am the Face of Lung Cancer

By: Deena Cook, lung cancer survivor and advocate

In the fall of 2011 my husband had an appointment with our PCP and asked me to come along because I had been coughing for 10 days or so and he thought I should see the doctor. That appointment led to a chest x-ray then CT scans and PET scans.

In July 2012, after monitoring several nodules for months, it was decided to remove and biopsy the larger nodule that had changed in appearance. I went into surgery not knowing if I had cancer. I came out without a lower left lobe and a diagnosis of stage one adenocarcinoma. I recovered well, went back to work six weeks later and was told to come back in six months for a check-up. No follow-up treatment was required! Piece of cake! My husband and I were excited about our upcoming retirement at the end of the year and we anxiously awaited the arrival of our 7th grandbaby.  Life was wonderful!

Deena, her husband Roger and their seven grandchildren in July, 2013

Our retirement in January of 2013 was celebrated with my six month CT scan showing that a nodule in my upper left lobe had changed. The biopsy showed cancer again. My second surgery took place in April, nine months after my first surgery and four days after our newest granddaughter was baptized.

My second tumor was also stage one adenocarcinoma. A second primary tumor. The official term for my lung cancer diagnosis is Synchronous Multi-primary Lung Cancer.

My second lung cancer diagnosis woke me up. I started to research this disease and became proactive in my care. I am among only 15% of lung cancer patients who are diagnosed when the cancer is localized. It was found incidentally. From all that I have now learned about lung cancer, I KNOW how lucky I am.

I wanted to make sure that others wouldn’t have to be lucky to be diagnosed at early stage for lung cancer. I have become a Lung Cancer Activist.

It took time to get over the stigma associated with lung cancer. I take responsibility for “being cool” and smoking when I went off to college, but I quit in 1988. I did what our government told me to do, but I still have lung cancer.

I am committed to fighting the stigma; to insisting that our government fund lung cancer research proportionate with its public health impact; and to mandating that a portion of the billions of dollars collected each year from tobacco taxes be used for lung cancer research and patient healthcare.

I am the face of Lung Cancer and intend to stay that way for a long time! By the grace of God, a loving husband and a diligent PCP, we just celebrated another stable CT Scan! Wooo Hooo!