One Day at a Time

I’ve been campaigning as a lung cancer advocate since 2009, when I organized a run/walk to raise awareness during November, which is lung cancer awareness month.  That first race was a great success, raising over $50,000 in just one day.  This year I will organize my seventh race and hope to raise $70,000 when all is said and done. In the first four years the money raised by the race was used to support the National Lung Cancer Partnership’s program to fund lung cancer research by young investigators.  In the last three years, we have used the race to fund my charity’s programs to raise awareness and promote screening and early detection.

Lung cancer screening using low-dose CT scan is now accepted medical protocol. Our mission is to make sure that people most at risk of developing lung cancer (former smokers and current smokers over the age of 55) are aware of the need to get an annual screening.

Putting on a race is a big undertaking that requires a lot of effort, day by day, all year long. We’ve been working on a new and improved website since January. The website is designed to be a resource for anyone diagnosed with lung cancer. Check it out at www.lungcancerresearchcouncil.org .

Under the tab “Support/Resources” you will find a link to the newly revised NCCN Patient Guide for Non-Small Cell Lung Cancer, sponsored by The Lung Cancer Research Council and Lung Cancer Alliance. The Guide is free and provides 122 pages of essential information about lung cancer that every newly diagnosed patient and caregiver needs to know, including what lung cancer is, how it is staged, treatment options, and making treatment decisions.  I would have been glad to have this resource when I was diagnosed. Copies of the guide is also available in print at Amazon.com.

What we are doing is a lot of effort and expense and I’ve sometimes wondered if we are making any difference. I am learning that, in fact, our efforts are beginning to make difference, albeit on a small scale.   

I received a letter by e-mail not too long ago from woman thanking me for alerting smokers and former smokers over the age of 55 about getting an annual screening for lung cancer. The column I wrote last year inspired her to get screened, which resulted in her finding early stage lung cancer last December at the age 72.  Thankfully, because it was found early, she was a candidate to have the cancer surgically removed and now has a good prognosis for living a much longer life.  It only takes something over 300 screenings of high risk individuals to find one lung cancer. By comparison, you need to screen 1000 women to find one breast cancer. The trick is getting the people at risk educated to act. By the time you become symptomatic it may be too late!

Last week I went on Facebook to promote our November 7^th run/walk and discovered 15 messages, some more than a year old, from people I did not know. I had no idea that complete strangers were trying to reach me by messenger on Facebook to talk about their lung cancer diagnosis.  One message was from a 9/11 NYC fireman’s cousin, looking for some hope. She had found my book “Living with Lung Cancer – My Journey” and wanted me to speak with her fireman cousin to give him hope. Unfortunately, by the time I responded, her cousin Chris had already passed.  

In another message, a woman from Boston reached out to me to tell me she was writing a lung cancer book of her own. She wanted tips on getting published so this weekend we spoke by phone.  I learned that she is a 50 year old single mother of two who never smoked.  She was diagnosed four years ago, at the age of 46, with Stage II lung cancer.  Tragically, she lost her husband in a car accident the year after she was diagnosed. She was formally a financial advisor and quit her very good paying job to be a stay at home mom.  Now she is struggling to get back on her feet financially.  She called me to thank me for giving her hope and offered to help The Lung Cancer Research Council get started in Boston.  That gave me hope this week, that we are, indeed, making progress, day by day, one day at a time.

60th Birthday Bash

It’s official.  I am now over the age of 60 and racing toward the last and best (I hope) years of my life. Yoko and I spent a very special birthday weekend at my sister’s new home outside of Philadelphia. I want to share with you some of what we did.

We left from Ft. Myers on Wednesday evening and arrived in Philadelphia around mid-night.  My daughter June, who lives in Hawaii, was waiting at the airport hotel when we arrived!  June’s joining the festivities was supposed to be a surprise, but my sister, Jane, let the cat out of the bag when she texted me asking when June would be arriving! Up to that point I had no idea that my daughter would be coming to spend the weekend! She had been in Seattle on business and decided to fly to Philly to join the celebration. God bless!  What a nice thing to do!

On Thursday morning we drove to the gravesite of my mother and father, who are interned at Whitemarsh Memorial Cemetery, in Horsham. It was the first time for me to visit both my Mom and Dad at the cemetery, so it was a tearful reunion. Dad died at the age of 76 in 2002 and Mom passed away at 90 years of age in 2014. I think about my parents every day and the sacrifices they made to raise five children.  If they were still alive, I would thank them for everything they did and let them know how much I loved them. They will always be with me in my heart.

After an emotional visit to the cemetery, we drove a nostalgic tour of the area where I grew up.  I made arrangements to see my other set of parents, Victor and Eileen Friscia, who are now in their 80’s and in failing health. I have been a close friend of their daughter since high school.  I was so close to Vic and Eileen that I considered them to be my alternate parents. I always addressed them as Mom and Dad Friscia. Their bodies are now failing, but thankfully, their minds are as sharp as ever, so we had an enjoyable visit. They were in their 40s when I first knew them and they are still in the same house 49 years later! I hope I am doing as well just 20 years from now.

I dropped Yoko and June off at Starbucks, so I could attend a meeting with NCCN (The National Comprehensive Cancer Network) based in Ft. Washington, PA.  It turns out the NCCN’s headquarters is just down the street from where my Dad worked! I consider it a God wink that, here I am, 40 years later, meeting with an important cancer organization about promoting lung cancer screening and early detection after having just left Mom and Dad Friscia who warned me about the dangers of smoking when I was in high school!  Talk about full circle!

I woke up at 5 AM Friday morning to a vibrating phone and Facebook messages wishing me a happy birthday!  The messages came pouring in from all over the world literally all day long, from people I have not seen or heard from in a very long time.  It made me realize of how many friends I have made in the many places I have lived over the years. It was nice to know so many people bothered to send a “1” for Happy Birthday, or took time to send a short personal message.

The highlight of the trip, however, was dinner Friday night, hosted by my two sisters and their husbands and including myself, Yoko and June.  We ate at R2L, a high-end restaurant on the 37^th floor of a Philadelphia skyscraper overlooking the city.  We ate and laughed and toasted throughout the night.  At the end of the evening, after desert was served, I was surprised by my daughter June who presented me a bag full of small gifts numbered one thru nine.  These were accompanied by a letter from all three of my daughters who had written nine paragraphs about things they learned from me over their collective 90 years. I was instructed to read the letter one paragraph at a time and then open the accompanying gift. 

It was the most thoughtful idea for a gift I have ever received from my children. I was choked with emotion and practically speechless as I read their touching letter.  It is every father’s dream to have children who appreciate them. To know they do so while I am lucky enough to still be alive is extra special and very poignant.

Doing What's Right, Not What's Popular

I went to a Catholic elementary school and I remember Sister Sylvester telling me that if I wanted to know the difference between right and wrong, all I need do is ask myself if I would do it or say it in front of my mother.  Needless to say, she made an impression, and that advice kept me out of trouble for a long time. (It’s a wonder I ever had three children!)

As time has gone on I’ve come to see many things in this world that I identify as wrong or immoral. The marketing of deadly cigarettes to minors is just one example.  I want to say something or propose a solution, but whatever I say, there will be opposition, especially if it involves people’s livelihood. 

Change only happens when you win over hearts and you come to a tipping point. That’s not an easy thing to achieve. People resist change, human nature being what it is.  It took gay rights advocates decades of advocacy to get where they are today.

I thought Pope Francis’s recent visit to the U.S. and his advocacy for the poor was inspiring, I only wish more people were like him, striving for humility and teaching by example.  Unfortunately, a personage like the Pope is a rarity. 

I’m a realist.  I understand why our country’s founders worried about self-government. People can’t be trusted to just do what is right.  It’s why we have a system of checks and balances and the separation of power in government.

In the field of medicine, profit should never be the motive in treating patients.  That would be wrong. Yet, I know we would never make any progress in improving medicine if there were not some profit incentive in the healthcare system. I would not begrudge my oncologist a penny, provided that he or she was recommending a course of treatment that was necessary. I do, however, take exception to the inexplicably high prices of life-saving drugs.

The most egregious case recently was Turing Pharmaceutical’s purchase of the drug Daraprim, the only medication for treating toxoplasmosis, an infection that can cause birth defects.  It’s a drug also used in combination with other drugs for HIV infections, cancer and malaria.  Turing purchased the decades old drug and increased the price from $13.5 to $750 a tablet – a 5000 percent increase!  Not surprisingly, it turns out that Turing’s CEO, Martin Shkreli, is a former hedge-fund manager.  Greed like this makes me want to bring back tar and feathers. It’s just plainly wrong.

This month is breast cancer awareness month. It goes without saying that I am very sympathetic to women who have breast cancer or any cancer, for that matter.  It seems to me, however, that corporate support of breast cancer awareness is over the top.  Pink is everywhere in the month of October. You have to ask why the campaign is so successful?

Breast cancer advocates should be congratulated for coming up with such a blockbuster idea to raise awareness. Enlisting corporate sponsors is both profitable and effective.  For the corporate sponsor, being a supporter and putting a pink ribbon on something you’re selling helps sell the product.  Corporations are not being altruistic when it comes to supporting breast cancer, they are acting in their own self-interest and marketing to a powerful consumer group – women.

I am getting ready for the SW Florida Lung Cancer 5K Run/Walk and Mile of Memories walk scheduled for Charlotte Sports Park on November 7^th.  I am hoping we are going to have a record-breaking crowd attending the event, but I expect to be disappointed.

For years I dreamed of filling the 5,000 seat stadium with lung cancer supporters.  Every year I despair that we get a turnout of less than 1000 people.  The Susan G. Komen Race for the Cure at Coconut Point attracts nearly 10,000 runners and walkers and raises $1 million annually in funding.

Lung cancer kills roughly 35,000 Floridians every year. In Charlotte County alone it is estimated that we lost 460 people to lung cancer last year. Victims of lung cancer are fighting for their life; they are not available to serve on a fundraising committee or walk or run in a race.  They are certainly not a consumer group that has much marketing merit for corporate sponsors.

I haven’t found a way light a fire under people.  But I know the difference between right and wrong and I know that advocating for lung cancer, the leading cause of cancer death, is right, even if it is not popular.

 

Beating the Odds

I manage other people’s money for a living, so I know a thing or two about risk and statistical measures.  If I were a betting man, I would have bet against my living eight years after getting a diagnosis of late stage lung cancer. But, here I am, against all odds. 

I got my annual surveillance scan results this week and I am pleased to report that I am still NED (no evidence of disease). Dr. Thomas Fabian at Advanced Imaging has been one of my doctors from the beginning.  When I finished my scan this week, he was waiting at the door for me as I emerged from the exam room.  He guided me to his office to immediately review the results. I think he may have been as anxious to know the outcome as I was.  After all, he has eight years invested in my case.  
Together we looked at a comparison of this year’s scan to last year’s. Dr. Fabian reviews these detailed images like he is looking through a digital family photo album. For a layman with no medical training I cannot really see very much.  Dr. Fabian pointed out what he was looking at: “Here is the top of your heart….this is your lungs, here is where the tumor was, you can see the scarring from the radiation there…your liver is clean…nothing remarkable.” After a few minutes reviewing the all the images, Dr. Fabian told me that “Everything looks good.”  Those are words every cancer patient wants to hear.

As I was leaving I thanked Dr. Fabian and asked him how many patients he has known with my stage of disease still around eight years later. His answer was “Not many. You are definitely in the 5%.”  I also asked him if he has seen any uptick in lung cancer screenings.  Sadly the answer was also “no, not many.” If you are or were a smoker and you are 55 or older, don’t put it off.  Get screened!

I’ve been talking about the 16% five year survival rate for lung cancer in this column for many years.  But the reality is that 16% is an AVERAGE five year survival rate from date of diagnosis. That data could be parsed into survival rates based on stage of disease.  Stage I and II survivors would be the largest group, followed by Stage III and Stage IV, who naturally have lower survivorship rates.  If you took all lung cancer cases and put them in a graph with number of people diagnosed on the vertical axis and time to death from date of diagnosis on the horizontal axis, you would find that it forms a downwardly sloping curve.  By the time you got to 5 years on the time scale, 84% of the patients diagnosed would have died. The people who survive beyond the five year mark are the outliers.  As you move farther and farther to the right on the curve, the survivorship declines until 95% of the patients you started with are gone. I am one of the lucky ones in that is in the remaining 5%.

Most of the people diagnosed with lung cancer 8 years ago are now gone  As a survivor, I feel it is incumbent upon me to do what I can to honor them, remember them, and do something to increase survivorship.  If you would like to honor and remember someone you loved who died of lung cancer, make a memorial sign for them to be displayed at the SW Florida Run Walk November 7^th. Get your sign made today at www.lcrcinc.org .

Any discussion about the cancer statistics and death rates should include a caution: people are not statistics.  Every case is different and no one can tell you with certainty what the outcome of your case will be. Scientists love to use statistical measures to predict outcomes, but there are many factors that influence outcomes.  The more complex the problem, the more unreliable predictions will be. Cancer is about as complicated as anything in life.   The factors that influence the outcomes of cancer cases are as numerous as there are patients. Since no two people are alike, so no two cases are alike.  As I said at the beginning, based on statistics, I would have bet against me being alive today. The odds were against me. It turns out I would have lost that bet.  And as they say in golf, I’d rather be lucky than good!