Cancer Hope Network is proud to partner with Free to Breathe to provide support for lung cancer patients and their caregivers. Each month, we feature a lung cancer survivor’s story. For more information about Free to Breathe, or to gain access to additional lung cancer survival resources, please visit http://www.freetobreathe.org/.
It took awhile to get a straight diagnosis and staging for my lung cancer. I had been referred to a rheumatologist because of worsening joint and muscle pain. He told me that once I dealt with the mass in my lungs that was preventing my bones from getting the oxygen they needed, my bone pain would go away. I went from there to a pulmonologist and then to the Lung Cancer Clinic at St. Joseph’s Mercy Hospital. There, my diagnosis was ultimately changed to lung cancer — stage 3B adenocarcinoma with stage 4 lymph node involvement.
To further complicate my diagnosis, a pulmonologist at the VA said I have asbestosis with complications of lung cancer and COPD. From a personal perspective, it remains a debilitating diagnosis, no matter what you call it. Following my treatment early in 2006, I have no evidence of disease (NED).
Because I was a smoker, nobody listened when I talked about my work with asbestos. I had to see a pulmonologist that specialized in asbestosis to get anyone to consider that exposure as a possibility. The linkage to asbestos has had significant financial, legal and social impact for me. Without it, the VA would not have recognized my disability as service related, the courts would not see my disease as qualifying for compensation under the asbestos trust funds, and it would have continued to allow society to take the easy route of blaming lung cancer all on me.
When you’re faced with a lung cancer diagnosis, it helps to have people you love in your corner. My wife Cathy fits that bill. I don’t know how she does all that she does, or how she holds it all together with such grace. She refused to believe that I could or would die through all of this.
Actually, Cathy was 6 1/2 months pregnant the day I was diagnosed, and my eldest daughter Stella was born when I was just starting chemo and radiation. I had a lot more to worry about than lung cancer. At 21 days of age, Stella had a brain bleed that left her with many physical and cognitive challenges. It became easy to forget about my cancer while she struggled to live. Life has not been easy for Stella, yet she remains one of the happiest and most loving people I’ve ever known. When I see her joy for life, I find myself unable to complain over anything I’ve experienced!
I am so blessed to have three wonderful daughters: Stella, 9; Grace, 7; and Leda, 5. I don’t know if I could breathe without them. They’ve made me a better man than I have ever dreamed of being, and they’ve brought so much joy! My life is fuller and more meaningful than I ever thought possible. There is certainly the challenge of being a dad with a young family, constantly worrying what will happen to them should I pass tomorrow, or wondering if I’ll be around long enough for them to remember me. But it’s a gift that I have had ten years to take care of them and for them to get to know me.
To those newly diagnosed — know that people can’t help themselves when they offer you “advice.” When people tell you it’s all about your attitude, or that the lord won’t give you more than they can deal with, just laugh at their ignorance. You’re entitled to get mad, sad, bad and giddy, because it’s really only happening to you. Focus on what YOU need.
Also, take heart in the fact that lung cancer science has come much further in just the last 4 years. If there was ever a time for hope for this disease it is now. Now more than ever, patients need to be actively involved in every part of their treatment. Ask questions, do your research and get second opinions. Seek out a different provider if they are unwilling to include you in your treatment decisions.
My oncologist, Dr. Phillip Stella, has been a rock for me. He is a source of constant encouragement, yet is also an honest confidant. He is a man who loves his work, and shares his enthusiasm and joy for life, and that has proven to be a touchstone for me.
Since my lung cancer diagnosis, I have found ways to get involved in the lung cancer community to bring forth more progress. I review research grant applications to help determine which ideas need to be funded. I serve on the Patient-Centered Outcomes Research Institute (PCORI) and Department of Defense (DOD). I also sit on Institutional review boards at University of Michigan and at Trinity Health.
I even put on my first fundraiser this month. I road my motorcycle the 1,280 miles round trip from Michigan to New Jersey for the Free to Breathe Lung Cancer Action Summit. My goal was to raise $5 per mile, or $6,400. While I came up short of my goal, I still raised over $5,400. I have so much gratitude to everyone who donated to my campaign, but one donation stuck out. My friend Renai, who I met at the Nashville Free to Breathe Action Summit three years ago, donated $640. She had lost her father to lung cancer and we became close at the summit. I was left speechless when she shared my picture on her Facebook page and quoted something I had told her years ago. As devastating lung cancer can be, it has truly brought many wonderful people into my life.
I am alive, so I make sure to tell people that I had/have lung cancer. Just getting that out there spreads the message that this disease does not have to be a death sentence. My life is an example of what is possible, and my life is pretty wonderful!