September 13, 2012 marks 10 years that I have been a lung cancer patient advocate.
So much has happened in my life within those 10 years. I’ve had a lot of personal and professional successes. I founded a nonprofit and co-created the first online support network for people affected by lung cancer in 2002. I trained, studied and collaborated with national cancer advocacy and support groups for several years. I’ve encountered thousands of people affected by lung cancer and created support services and connections for people globally. I founded the first lung cancer event in my community, started the first lung cancer support group in the state of Texas, partnered with a strong research organization in 2006, (LUNGevity www.LUNGevity.org ) and ultimately came to work for them full time in 2010.
In just the two and a half years that I’ve been on staff with LUNGevity, the Foundation has funded 5 million dollars in lung cancer research- Impressive!-But just a drop in the bucket for what is needed to find a cost effective non invasive early detection test and to find targeted therapies that will work to stop lung cancer growth and save more lives. The work continues. I want us to tip the current lung cancer statistics so that one day there will be more survivors than fatalities from lung cancer and a world where detecting lung cancer early will be the norm instead of something that happens in just a handful of people. We want a world where people survive lung cancer, not die from it.
Although I’ll admit to being LUNGevity’s biggest fan and the incredible growth of this organization has been breathtaking at times, I’m not writing today to toot my own horn or congratulate the Foundation on jobs well done. Lung cancer is still the deadliest cancer. That fact hasn’t changed in my decade of advocacy and sadly the statistics are virtually the same. None of my personal efforts or accomplishments has changed those facts. I’m not a scientist or a medical expert- those folks are HEROs in my book. And even though I know for certain that there are some amazing researchers and scientists and clinicians who are working tirelessly to make an impact against this disease, there’s more work to be done.
My personal mission has been on emotionally supporting the patient and family through the many stages of lung cancer. The scientific and medical advances for lung cancer haven’t advanced quickly enough and some people simply run out of time.
This past decade is a bittersweet reflection for me. My dad passed away from lung cancer and my mom died suddenly 3 years after him. Many patients who later became dear friends and colleagues have passed away from this disease and funding for lung cancer and awareness about the disease is still lacking compared to other major cancers. Losing my family and friends has been devastating and discouraging. At times, I’ll admit, the fight against lung cancer has felt like an uphill battle.
It’s during those uncertain and dark times that I remember the words of dear friends, survivors and co-survivors, who have become my family over the years. They encouraged me to keep putting one foot in front of the other and to always focus on hope. They support LUNGevity by sharing their survivor stories, attending events, helping raise awareness and helping LUNGevity become the largest private funder of lung cancer research in the nation.
They let me know that every step we take is making a difference in their lives on a daily basis and a great difference on a national level thru the research LUNGevity funds. They let me know that even after a decade in the lung cancer community with roadblocks and obstacles; I can still have HOPE- because they are alive. They tell me that because of us, their lung cancer experience has been a little softer, and that they have hope for the future.
I sometimes think about how different things would have been had my dad been diagnosed in 2012 as opposed to 2002 and the possible benefit early detection would have had on his survival. I think about how comforting it would have been to have had access to an organization like LUNGevity when he was first diagnosed and programs like LifeLine that offer one-on-one support. My dad is never far from my thoughts.
Lung cancer invaded my life, changed it forever, turned me into an advocate and eventually gave me my life’s mission.
I’m ten years older today although I don’t look like I’ve aged a day! (Wink) I am still driven in my mission to support people affected by this disease and dedicated to ensure no one ever has to walk this walk alone. I can’t stop now. After all, 41 years ago President Nixon officially declared war on cancer and it’s still ongoing.
We’ve got a lot of work left to do.
I’ve seen the creation of lung cancer support groups, lung cancer centers, and lung cancer events. I’ve seen the development of targeted therapy drugs like Irressa and Tarceva and Xalkori save the lives of stage IV patients. I’ve seen the implementation of the National Lung Cancer Screening Trial. I’ve watched invasive procedures become less invasive and impossible tumors annihilated by cyber knife and targeted radiotherapy. I’ve seen some changes in perception and more education and awareness about lung cancer develop and I’ve been blessed to be a miniscule part of it. I’ve seen public recognition of lung cancer and LUNGevity. Progress!
I’ve also witnessed the passing of many people to this disease because they ran out of treatment options and time. I’ve seen more people under the age of 50 diagnosed with lung cancer who have never smoked. The NLCST wouldn’t have helped them because they don’t qualify. They are too young and without risk factors. Symptoms of lung cancer appear only in later stages. There is still no early detection test for lung cancer.
We’ve got a lot of work left to do.
1 in 14 people will be diagnosed with this disease that took my father’s life. That “1” person is someone’s child, father, mother, brother, sister, relative, co-worker or friend. That “1” person may feel afraid, isolated or alone like my father did 10 years ago.
There is hope today within a community of support for people affected by lung cancer.
There is hope for the future with LUNGevity’s focused dedication to fund critical lung cancer research.
That’s a lot of hope to keep me going.
After all, we still have work to do!
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