Submitted by James Fiorentini. Originally written for the 2018 Shine a Light Boston Event.
I am here tonight to thank the community that has taken such good care of me since I was first diagnosed over six years ago. Like most people who have survived lung cancer for more than a year or two, I was diagnosed by accident.
Seven years ago, I was rushed to a local hospital and diagnosed with pneumonia. They hospitalized me for several days, took X-Rays and CT scans. After a year of treatment for pneumonia, I had a second opinion at a different Boston hospital that said that it was not cancer, which is always everyone’s fear. My doctor suggested I get a third opinion and I chose the Mass General Hospital: my best decision ever. They sent me to a surgeon there. I could not understand why I would be sent to a surgeon for pneumonia but I went. The surgeon, Dr. Cameron Wright, looked at my scans taken month’s earlier and said that I had lung cancer, not pneumonia.
The diagnosis was devastating. Like most of the public, I assumed that lung cancer was a self-inflicted disease brought about by smoking, or exposure to asbestos or working in some toxic industry, none of which applied to me. I peppered my doctors with questions, what I had done wrong? Was it that one cigarette that I had tried when I was in the 5th grade? Was it the time I picked up a piece of asbestos? I must have done something to have deserved this, something to have brought this on.
I made it a point to tell almost no one about the cancer, and the few people I did tell all had the same question—did I smoke? They felt just as I did, that I must have done something to have caused this.
It was an extremely difficult time for me. Every single person I had ever met that had lung cancer had died, my first cousin, my uncle, the boy I met as a VISTA volunteer, the man who was my neighbor when I grew up--- none of them had lasted more than a few months. I was certain this was my fate too.
Then my wife went online and found a wonderful woman named Diane Legg. She lived in the next town over from me, only a few miles from where I lived. I had never heard of her or her organization LUNGSTRONG. She had had lung cancer at that time for over ten years and like me, had been diagnosed by accident. She was kind enough to respond to my emails and then speak to me on the phone, and I began to regain some hope.
I met some wonderful people at Mass General; Dr. Wright the surgeon who put up with my endless questions and saved my life, two great oncologists Dr. Fidias and then Dr. Temel, and wonderful nurses and counselors. Gradually, my confidence, and optimism began to return. For almost five years, my scans were normal. On my final 5th anniversary scan unfortunately, it turned out to be a problem.
Once again, the wonderful doctors, counselors and nurses at Mass General Hospital stepped in to help me. Right now I am treatment free and symptom free. I am aware that this could change at any time, and I lead as normal as a life can be when you are a Mayor. There are days, like Tuesday, where I get to work at 8 in the morning and do not get home until 10 at night. I’ve stopped asking people what I did wrong. I have come to understand that in the modern industrial world, if you have lungs, you may get lung cancer. I have also come to understand that no one deserves cancer, not the person who never smoked and not the person who smoked 5 packs a day.
And I have come to understand that although all cancers are bad, that lung cancer presents its own unique set of challenges because of the stigma. Millions of people believe, as I believed, that lung cancer is a self-inflicted disease. Because of that stigma, lung cancer remains hidden and underfunded.
Historically there haven’t been enough people who survived lung cancer to have been a strong lobbying force, thankfully that is changing. I have been to many cancer walks and fundraising events. Unless it is a LUNGSTRONG event, I almost never hear from lung cancer survivors or about lung cancer.
For those who have survived for a few years, many of them are often ashamed or embarrassed, as I was, and hide their lung cancer from anyone but their closest friends.
They seldom speak or reveal themselves.
This is the first time I have ever spoken publicly to any large group about having lung cancer. But over the past year, as I have gradually emerged from my self-imposed secrecy, I have begun to learn that I am not alone. More importantly, I have begun to realize that perhaps I can be of assistance to others who had the same belief I did, that we must have done something wrong.
There is a lot of joy being Mayor, but some of the greatest joys have been the times I have been able to reach out to people and say listen, I know, I have been there, I have walked in your shoes and I feel your pain. At first they do not believe it—I am their Mayor, Mayors are supposed to be strong, I look perfectly healthy, I ride a bike and work out, how could I have what they have? But gradually I have won some confidences and been able to help some people.
As I gain the courage to tell people about my own cancer, and it is still extremely difficult, I am hopeful that I can use the position that I have been fortunate enough to have for fifteen years to have held to raise awareness of lung cancer and advocate for more funding. I am hopeful that I can use my position to advocate for more early detection. Only an early accidental scan allows me to be there this evening. I have worked with the Lahey Clinic to have early scan screening for my employees, almost none of whom have any idea that I have had cancer, and maybe, just maybe, we can contribute to saving someone’s life, just as mine has been saved. I have much more to do.
I can never do what Diane has done, but maybe I can do for others what she did for me, and help one or two people realize that they are not alone.
I do not know for certain what I can to do help, but I know where I can start; by saying to all of you who treated me, and to all who have put your hearts and souls into finding a cure for this horrible disease, from the bottom of my heart, thank you.
James J. Fiorentini is the Mayor of the City of Haverhill, Massachusetts. Mr. Fiorentini is a lifelong Haverhill resident. To read his full bio, click here.