GUEST BLOG: Sarah Lackner Attends the Charlie Cole Golf Classic

Lynn Cole and Sarah Lacknerby Sarah Lackner

I spent the third weekend in May in Asheville, North Carolina on behalf of the Meso Foundation at the 3rd Annual Charlie Cole Golf Classic hosted by Lynn Cole, along with her children, Matt and Katie, in memory of her husband, Charlie, who lost his battle with mesothelioma on March 31, 2010 after only 17 months.

I hadn’t met the Cole family prior to this weekend, but what occurred during that quick less-than-48-hour trip is exactly what the Foundation is about. The warmth and strength that the family displayed, their incredibly supportive and loving friends, as well as other local meso community members all contributed to making the day an absolute success.

Not only was I able to thank the Cole family for their commitment, their friends and family for their support, I was able to spend time truly connecting with each of them. Katie and I were the same age when we lost our parent and zipping around on the golf cart gave us a few hours to share our experiences, both of the loss and of life after the loss. Later that evening, Matt and I were able to also have those conversations that only occur with someone who has been through what we as a community go through. C.S. Lewis says that friendship is born that moment when one man says to another “What? You too? I thought that no one but myself…”

Charlie Cole Gold ClassicThis event was, for me, everything that the Foundation works for: supporting research, education, support, and advocacy programs through raising funds and awareness as well as bringing together those affected by mesothelioma. It takes what is often an isolating disease and provides a place where if you want to talk about it, everyone understands, and if you don’t want to talk about it, everyone understands.

Thank you, so much, Lynn, Matt and Katie for allowing me to share the weekend with you. And thank you for believing in and working towards a cure.

Update on Mesothelioma: A CancerCare Teleconference

CancerCare Update on MesotheliomaOn Monday, June 30 from 4:30-5:30PM Eastern Time, CancerCare is hosting a free mesothelioma teleconference workshop. The teleconference, titled Update on Mesothelioma, will feature a panel of experts to discuss numerous topics related to the disease. Registrants will be able to listen in on the phone or through a live stream online.

The Update on Mesothelioma teleconference will cover topics including mesothelioma treatment choices; the role of clinical trials; managing side effects, discomfort and pain; communicating with your health care team; quality of life and life style concerns; and physical activity and nutrition issues and tips. Questions for the panel of experts will also be accepted.

The panel of experts consists of four individuals: Richard J. Gralla, MD, FACP, Professor of Medicine, Albert Einstein College of Medicine; Lee M. Krug, MD, Director of the Mesothelioma Program, Associate Attending Physician, Division of Thoracic Oncology, Department of Medicine, Memorial Sloan-Kettering Cancer Center; Mary Hesdorffer, MS, APRN-BC, Nurse Practitioner, Executive Director, Mesothelioma Applied Research Foundation; and Winfield Boerckel, MSW, MBA, Director of Social Service – Long Island, Lung Cancer Program Coordinator, CancerCare.

Mary Hesdorffer, MS, APRN-BC, is an expert nurse practitioner with over 16 years of experience in mesothelioma treatment and dozens of published articles in a variety of scientific journals. She is the executive director of the Meso Foundation and the first line of help for patients and caregivers faced with a mesothelioma diagnosis.

Lee M. Krug, MD, is an Associate Attending Physician in the Division of Thoracic Oncology, Department of Medicine at Memorial Sloan-Kettering Cancer Center in New York, New York, where he completed a fellowship and chief fellowship in medical oncology. Dr. Krug is the Director of the Mesothelioma Program at Memorial Sloan-Kettering Cancer Center. He is also the chair of the board of directors of the Meso Foundation.

To register for the free Update on Mesothelioma teleconference workshop, visit CancerCare.org.

Volunteers Needed: Meso Foundation’s Water Stop at NYC Marathon

nycmThis year, the Mesothelioma Applied Research Foundation has an opportunity to staff the water stop at Mile 19 of the New York City Marathon. This is an official water stop of the marathon and is a tremendous opportunity to raise awareness of our cause at such a world-famous event. This event features over 50,000 runners, and over 2 million spectators.

The marathon will take place on Sunday, November 2, and the volunteers are expected to be there between the hours of 7:30 AM – 3:30 PM.

Due to planning and security concerns, all interested volunteers must register online by July 31, 2014. No walk-ups are allowed.

If you are unable to volunteer, but still wish to participate in this event, you can give to the NYC Marathon water stop fundraising page curemeso.org/fundraising/nycmarathon.

The registration process outlined below requires several steps, so if you need help registering, please contact dpurcell@curemeso.org.

STEPS TO REGISTERING AS A VOLUNTEER FOR THE NYC MARATHON

If you are ready to VOLUNTEER for the 2014 TCS New York City Marathon, FOLLOW THE STEPS BELLOW:

1)    Follow the link https://mynyrr.nyrr.org/login and register with New York Road Runners (NYRR). 

If you need additional registration help, visit: http://www.nyrr.org/my-nyrr-getting-started

2)    Once you register, you will receive a confirmation email. Please follow the link in the email to finish setting up your account. (Can’t find the confirmation email? Check your spam folder!  Have Gmail?  Look in your promotions folder!

3)    Now, log in to your account and from the main page select VOLUNTEER, and select the area you’d like to volunteer in.

4)    Scroll to the volunteering event of your choice and select the radio dial to the left. Scroll down the page and click NEXT.

5)    Complete the missing information and click ACCEPT AND VOLUNTEER

Once you complete all the steps, you’ll receive a confirmation email from NYRR.

During the week leading up to the race, you’ll receive specific information about your assignment, and about what will happen on race day.

Looking for Inspiration

Running on treadmillby Mary Hesdorffer, NP, Executive Director of the Meso Foundation

I found myself on the treadmill looking for inspiration to go the extra mile. Two miles into it and I am running out of steam. I am not an ESPN fan, which means that I have to take inspiration from another source. Into my mind pops up the image of Joe Friedberg, MD.

Of course, I wonder, who else would channel Joe Friedberg while on a treadmill? Am I losing it?

As you know, Joe is a champion in the field of mesothelioma, toughing it out in the operating room with a grueling procedure, which has recently reported some promising results. I recalled a conversation with Joe when he suggested that to complete a pleurectomy decortication, one has to be totally committed to going the extra mile (as these operations last up to 8 hours) and one has to be willing to persevere through fatigue, and physical and mental challenges.

There has been much debate about surgery – extrapleural pneumonectomy (EPP) vs. pleurectomy decortication (PD) vs. those who believe that surgery should not be offered to patients with mesothelioma, and advocate for palliative care only.

I think about Joe in these debates, and his honesty and lack of bravado when he simply states that “we don’t know what is the best surgical option to offer patients and that all surgery in this disease is experimental.” Though the uncertainty is unsettling, the honesty is refreshing.

Recently, Dr. Friedberg and his team at UPENN have launched a new clinical trial that will randomize patients to either a pleurectomy decortication or a pleurectomy decortication coupled with photodynamic therapy. Joe has spent many years championing photodynamic therapy as an adjuvant therapy to his pleurectomy decortication surgery, making this clinical trial a one-of-a-kind move to get closer to the truth.

Doing 3 miles on a treadmill no longer seems daunting.

Here is why Joe’s courage is so important and why I hope others follow in his footsteps. It is well-known among researchers that most surgical studies have an inherent bias to them. In other words, a surgeon’s excellent numbers may be produced not only by their skill, but also by choosing to operate on patients who have the best chance to tolerate the surgery and do well after. The fact is, surgery often results in a surgical remission, but unfortunately, in mesothelioma, the cancer generally returns after a certain period of time. To extend the remission, surgeons use specific adjuvant therapies to lengthen the time to progression and, of course, create the best case scenario to prevent the return of disease. This is the crux of the discussion about what will kill the cells that are waiting like seeds in a garden ready to sprout into recurrent disease.

I am appalled to hear so many surgeons in this disease state quite frankly that their approach works and there is no need to do a randomized trial which will eliminate bias from their results. Worse yet are those surgeons who boast that their patients do better in their hands, with their procedure yet when I scour the literature there are no published reports in scientific journals. In academic medicine there is a phrase “If it isn’t published, it never happened.” In other words it is expected that you submit your results to a peer reviewed journal to demonstrate that your outcomes are accepted by your peers and your data has been analyzed by, and scrutinized by unbiased reviewers who are experts in the field of surgery. There is no room for arrogance when we are losing patients in these procedures. We need to know what is the true statistical difference. The gold standard is to compare a new hypothesis and test it against the standard to see if this really is a significant improvement.

Dr. Friedberg has reported some impressive results with his combination of pleurectomy decortication combined with photodynamic therapy, and now he’s willing to take a step further to understand if there is a difference between patients undergoing pleurectomy decortication alone from those getting both the surgery and the adjuvant therapy.

This is what the mesothelioma community needs – “proof of the pudding.” We truly do not know what is better so we need to strip back the notion of “my treatment works, and I don’t need to prove it.” Randomized clinical trials can help us find a gold standard of treatment for mesothelioma.

I guess, what that means is that I, too, should be going the extra mile on this treadmill. Mile 4, here I come.

Calling Him Dad: What My Father Meant to Me

Jennifer Gelsick and fatherby Jennifer Gelsick

When I was asked to write about my Dad, I struggled with it. I wasn’t sure where I should start. My father, Donald Edward Smitley, was born on April 25, 1956. He was diagnosed with pleural mesothelioma on January 30, 2012 and fought as he lived, with faith, grace, and love, until he took his last breath on October 15, 2013 at the age of 57. Mesothelioma ultimately took his life, but it was a beautiful life, and he was so much more than just a disease.

Over these past few months, I’ve been reflecting on what it was like growing up with my Dad. I had told many people that I would have rather had 30 short years with him as my father than 100 with someone else. I mean that from the bottom of my heart. My Dad was the perfect father to me.

Growing up, there aren’t a lot of memories that don’t involve my Dad’s laughter. He had an unfailing knack to make the best of any situation and bring out the best in those around him. People were always drawn to him; he had a magnetic personality that just made people want to be close to him. I was blessed to have him all the time.

Dad was a handyman. He could literally fix anything. In my home, there was never a call to a plumber, contractor, or electrician. Mom and I just told Dad what was broken, and the next thing we knew, it was fixed.

Dad was a musician. He always said he just “played at” the guitar, but he had the most beautiful voice. I remember growing up and sitting with him while he played and sang. He would always sing “You are My Sunshine” to me, and “Rocky Top” became what he called his theme song. Later on, he worked up the courage to begin singing in Church and became a staple at community events; people loved to hear him sing. His love of God and neighbor always shone through. He also joined a bluegrass band called The Dunbar Boys (named after the town where he lived his whole life) and loved being on that stage performing for whomever happened to be around. It didn’t matter if there were 10 people or 300 people there; he always had the best time singing with his friends.

Gelsick as child with fatherDad was a special kind of dad. He was fun, goofy, and never afraid to look silly to make me smile. We were watching some home movies over Christmas where Dad and I were walking our dogs. Then, of course, I decided to walk Dad. I put the chain around his waist and dragged him all over the place. Some neighbors who were outside asked him what he was doing and he just laughed and said, “I’m getting walked!” He was constantly doing things like this. When he saw that I was happy, he was happy too.

Even though I danced my whole life, Dad wanted me to try out all different sports. Not necessarily by being on an official team, but with him. We spent hours outside playing baseball, kickball, and throwing a football around. I never exceled at any of these activities, but looking back, he was trying to help me become more well-rounded (or maybe to just be able to play games with the other kids). Plus, he liked chuckling at me when I would kick as hard as I could and miss the ball completely.

We were always going on adventures together. Whether it was taking a ride in the mountains or trying to bake cookies at home, he made even the most seemingly ordinary activity special. My Mom worked late one night a week; I was never in bed on time those nights. It became a game to see if I could get ready and be “asleep” under the covers by the time she got home. We never made it.

You would think that these things would have changed a bit as I got older, but they didn’t. Every Saturday morning was our time. Mom would be at work, and we’d be off. We would go out to breakfast, shopping, up to the mountains, for ice cream, do a project at home, and visit family… all in the same day. Those days are such precious memories for me.

Dad was more than just fun. We always had the kind of relationship where we could talk about anything. Dad gave the greatest advice of all time. No topic was off limits for us: school, work, faith – we discussed it all. He always knew exactly what to say. If he wasn’t sure, he would tell me to let him think about it and he would let me know what he came up with later. And he always did.

The day my Dad passed away, a piece of me went with him, but a piece of him stayed here with me. Even when he felt his worst, he wanted to work to help others battling mesothelioma. He believed that if he could help even one person, then what he was going through was worth it. His faith in God always carried him through.

I am honored to continue to work with the Mesothelioma Applied Research Foundation as a part of their Rising Leaders Council to help to eradicate this awful disease that causes so many families to be torn apart. I am also a part of MesoConnect, which allows me to remain in close contact with those in the meso community and do my best to help them heal, vent, and grieve. This organization does so much for so many, and my family and I will be forever grateful to them.

I could write a book, or 50, about Dad and his kindness, generosity, and genuine love for life, God, and his family. He was perhaps the single most powerful influence on my life. He didn’t just tell me how to live a good life, he showed me. This is a true testament of the life of the most amazing person I’ve ever known, and I was blessed to be able to call him “Dad.”