October 26, 2012. I was a 31 year-old father of a wonderful two year-old boy named Joe and my wife, Sheila, was 35 weeks pregnant with our baby girl, Crosby, when I was told I had Stage IV lung cancer.
Prior to my diagnosis, by all accounts, I was considered to be healthy. Earlier in the year, I had received a clean bill of health from my general practitioner at the time of my annual physical and had recently competed in my second “Tough Mudder” of the year. “Tough Mudder” events are hardcore obstacle courses that also raise money for The Wounded Warrior Project.
There was just that nagging, blurry spot in my right eye that showed up and wouldn’t go away. Since it had been a couple of years since my last eye exam, I scheduled an appointment with my eye doctor, who suspected a detached retina. After seeing several eye specialists and undergoing a series of tests, I was told I potentially had a melanoma in my eye, but it’s extremely rare for cancer to originate in an eye. Tumors in the eye are most likely a metastasis, so it was recommended I schedule an MRI and PET scan through my general practitioner.
That series of events led my wife and me back to the same doctor’s office, where just a few months earlier I had passed my annual physical with flying colors, where we were told the results of the PET scan were “all lit up,” and that I had “cancer everywhere”— in both of my lungs, liver, lymph nodes, and bones, plus my right eye. A week later, a biopsy revealed I had non-smokers’, non-small cell lung cancer. In just three and a half weeks, I went from seeing a blurry spot to learning I was ALK+.
Soon thereafter, I started taking the ALK inhibitor, Crizotinib (or Xalkori.) I immediately started to respond to the drug–my vision improved, and I was back to running within a few weeks. Unfortunately, after only three short months, the efficacy of the Crizotinib had worn off, and I found myself in the ICU with a pericardial effusion and pleural effusions in both lungs.
The first day of my week spent in the hospital triggered the 30-day “wash out” period I had to undergo while my team of oncologists searched for a clinical trial I might qualify for, and would be close to home base and most effective in keeping the fires inside of my body contained. Knowing I had a very aggressive form of cancer and having to be chemo-free for 30 days was an extremely difficult time, but thankfully, we were able to locate and qualify for a clinical trial for a second generation ALK inhibitor in the drug expansion phase, LDK368, which I am currently still on.
Despite the events of the last 14 months, Sheila and I consider ourselves to be so blessed. Blessed to have a family doctor we already knew and trusted implicitly, and who was very aggressive in assisting and moving us through those first few weeks. She is very frank, yet warm, and has had the misfortune of delivering some of the toughest news to us.
In fact, I have been very fortunate to have amazing doctors throughout this entire process and believe having a good relationship with your doctor is a crucial component to receiving the best care. You have to be your own biggest advocate. Make your case personal. Get your oncologist and their support staff invested in your life. Learn the intricacies of your health insurance’s summary of benefits. If you aren’t comfortable with the care you are receiving, figure out a way to change it. When it comes to your health and your life, do not be afraid to ask as many questions as needed about your treatment options until you fully understand and feel comfortable with them.
Effective treatment and professional care are only two parts, albeit essential ones, to successfully battling this terrible disease. I have learned having a solid base of emotional support is also important. My wife and children provide me with the strength and motivation I need on a daily basis. They propel me to keep moving forward, even when it is tough. No matter how poorly I may feel some days, my day is immediately brightened and my worries washed away – if only in that moment – when one of my kids is in my arms. My family keeps me present and engaged and constantly reminds me this life is exactly what I am fighting so hard to preserve.
I also started going to see a therapist, and I would recommend this to anyone else. The birth of my son in 2009 was a magical time for Sheila and me when our lives were so full of joy and anticipation of the years ahead, but the birth of my daughter brought on an entirely different set of emotions. She was born in the same hospital where just a month earlier, I had my scans performed and where a piece of bone was removed from my hip for my biopsy.
I was obviously grateful she was healthy–she was my little girl–but I started to ask questions, like what had she done to deserve a Dad who was going to need a miracle just to live long enough for her to remember me? Did all of these other dads of newborns in the maternity ward take for granted the fact that they were most likely going to walk their daughter down the aisle one day? I was angry. Talking to my therapist helped me move past the questions that had no answers, let go of the anger that was a waste of my time and energy, and focus on living in the present and to make the most out of every day I have left on this earth, no matter how short or long that time may be. And let me be clear, I truly believe I have many, many more good days ahead of me.
Whenever I am having a bad day, because, let’s face it, they will always exist, I have just learned to put my head down and do whatever needs to be done to keep moving the ball down the field, because time spent feeling sorry for myself is not going to help anyone. As long as I keep doing that, I know this disease cannot stop me.
Despite this diagnosis and prognosis, Sheila and I know we are blessed. We are blessed to have a strong marriage and two amazing, healthy kids, and as long as I still feel like a husband and father, I feel hopeful.
Sheila Kennett writes about the family’s choice to LIVE with lung cancer on the blog, “Team Kennett: A Playbook for Living“