Stephen Huff was diagnosed with stage IV inoperable lung cancer at the age of 29. Prior to his diagnosis, Stephen lived an incredibly healthy and clean lifestyle. As a former professional baseball player, he spent his entire life taking care of his body. He exercised, ate healthy, and never smoked.
Stephen shares his story — and what he wants others to know.
You were just 29 when you were diagnosed with stage IV lung cancer—you were young, never a smoker, and a former professional baseball player—were you in disbelief/denial?
I think shocked is the best verb to describe it. Prior to my diagnosis, I would have considered myself very healthy. I played college and professional baseball and took very good care of my body. My entire life consisted of eating healthy, exercise, never smoking, and generally good decisions (most of the time) but on June 1st, 2017, life as I knew it, would change forever. Just looking at me, you would never guess that my body is waging war on itself. By all accounts, I look like a “normal” guy, but the reality is, the inside of my body is full of metastatic cancer. Dealing with my diagnosis has been difficult (to say the least) and the one thing that cancer does (I think), more than anything else, is it takes away the feeling of control in your life. I am a high school teacher, just bought my first house and was getting married in 3 months – to be diagnosed with lung cancer wasn’t really in the “plan.” But now, every decision that I make, has to take into consideration my health. The most unfortunate circumstance that I deal with daily, is that currently there is no cure for my cancer. I go into each day with that realization, but I find myself never losing hope.
When did you first suspect something was wrong?
The furthest back that I can recall symptoms, was about 3 years ago when I began having some shortness of breath, but due to lack of exercise, allergies, and about a million other excuses, I put off going to the doctor’s office. Fast forward to January of 2017, I was driving home from work one evening and noticed a hard lump above my collarbone, and it was at that point that my fiancé at the time (and now wife) Emily basically took me kicking and screaming to the doctor. It took a total of 4 X-Rays, 3 CT-Scans, 2 ultrasounds, a PET scan, dozens of blood test, several misdiagnosis, and 6 months to finally confirm that I had stage IV lung cancer.
You were engaged to be married at the time of your diagnosis—engagement is a time in your life when you are planning your future with the person you want to spend the rest of your life with—this had to be difficult news for you and your fiancée to process—what got you through it?
Right after diagnosis and not knowing much about the journey ahead, I began preparing myself mentally and physically for my battle. In my mind, I was ready for only treatment option I knew about, chemo. I had heard all of the stories and folks told me that I was going to lose my hair, lose weight, and never go through anything so difficult in my life. But before I knew it, my cancer journey had already changed directions because of one simple test (“Foundation One” test). As the results came in, I tested positive for the expression of the ‘Anaplastic Lymphoma Kinase’ mutation or better known as “ALK Positive” mutation. This test result ended up being the best thing that could have happened (all things considered).
Tell us about your treatment.
Those that are familiar with Non-Small Cell Lung cancer, understand the effect that this “ALK Positive” test result had on the course of my treatment plan. See because of this genetic mutation, my first treatment option wasn’t chemo, it was a targeted therapy. Something most of my family, friends and I had never heard of. This targeted therapy is an oral tablet, that has minimal side effects compared to chemo, and most importantly, it allows me to live as normal as everyone else. I’m doing really well on it and each day I get to wake up and drink my coffee, take my dogs for a walk, and do all the fun things that newlywed couples do, like argue about who’s going to fold the laundry or unload the dishwasher. Not only has this treatment given me the ability to live a completely normal life, it’s also given me a huge sense of hope. To me, this is a miracle drug and is giving me precious time with my family and friends with a great quality of life.
What have doctors shared with you about long term prognosis?
I have requested to never receive an official timeline from my doctors, but I do know that the 5 year survival rate for stage IV lung cancer is less than 10%. The silver lining is that there are so many newly approved drugs, as well as in trial phase, which are doing phenomenal things, and so it’s very difficult to say what the prognosis is now. My wife and I try not to focus on what the statistics say, and focus more on how we feel day-to-day.
November is Lung Cancer Awareness—what do you want others to know about this disease?
Emily and I would love to use November (Lung Cancer Awareness Month) as a way to not only raise the awareness of lung cancer, but destroying the negative stigma that’s associated with it, and encourage more money to be invested in innovative research. We need to continue the development of successful treatment options, and it will help create more lung cancer survivors. I see from my own experience and the other patients I’ve met through various programs, what hope and excitement a new treatment option or breakthrough can bring. Our lives depend on it and the future of cancer research depends on it. Because of this – my family and I have become advocates to do what we can to further research and development because we see the (first hand) the importance of what research does and we want to do what we can to enable their work.
Tell us about the Huff Project—why you started it and what you hope to accomplish?
After I was diagnosed, I wanted to learn as much about my disease as I could. In doing so, I learned that not only is lung cancer the leading cause of cancer-related deaths, but it only receives about 6% of federal research dollars allocated to cancer related research. Needless to say, Emily and I felt called to make a change. As were driving home from a doctor’s appointment, we noticed a car that had a breast cancer awareness license plate. Naturally, we decided to order the lung cancer awareness license plate, to only find out that there was not one. After doing some research, we found that there is only one active lung cancer awareness license plate in the entire United Sates and it’s in the state of Georgia. So Emily and decided to do whatever was necessary to get this license plate printed for the state of Tennessee. The Huff Project started as a way for us to hold funds for our lung cancer awareness license plate initiative, but we realized that the license plate is really a means to a bigger goal of raising awareness, as well as actual research dollars. So we asked ourselves “What else can we do?” And now The Huff Project has blossomed into much more. Not only are we trying to get the first ever lung cancer awareness license plate printed for the state of Tennessee, but we are also doing several fundraising events such as a songwriter night and a golf tournament. Our mission is to help create a world with more lung cancer survivors, and we can do this by changing the face of lung cancer through creative awareness initiatives and fundraising for cutting edge research.
Is there anything your cancer journey has taught you—or what you might want to share with other cancer patients?
My successful treatment gives me so much hope for a better future. A future where more folks like me, are not only living, but thriving with lung cancer as a chronic disease. I would never call cancer a gift, because I would never wish it upon anyone or chose to give it to anyone else, but I will say that (for me) it’s been a blessing in disguise. Since my diagnosis, I’ve gotten so much love and support and it has made me appreciate life more than I ever did before I was diagnosed. I’m a stronger person because of this battle with cancer and it’s opened my eyes to the importance of advocacy & standing up for what is right. I’ll spend the rest of my life advocating for the awareness of my disease. Because I believe it will have an impact. I’ve learned so many things about myself during this journey in life, but most importantly, I’ve learned that our lives aren’t measured in years, they’re measured in the amount of people we touch around us, and if you believe your only purpose in life is to serve yourself, then you have no purpose – INSPIRE SOMEONE TODAY!