For more than six years now I have been sharing snippets and vignettes from my waltz with leukemia. But what I haven’t spoken of much was the dance that my mom was living parallel to my own; first with breast cancer and then in the last three months, stage four lung cancer.
That is what my kiddos call the baby hair growing back on my head. It has been almost two weeks of growth now and my scalp is no longer ghost pale as if I were wearing a tight, white speedo swim cap. When I ask the doctors if it will all grow back, they answer, “Probably, but maybe not. We will see.” That is a pretty common answer from my doctors. Apparently, we are in somewhat uncharted waters.
Two weeks ago, I stood in my driveway as my oldest son, Shawn, gave me a hug, climbed into his SUV, and drove away down the street. He waved to me, and as I waved back I whispered, “God, please bless your son as he rides into this next chapter of his life in pursuit of his dream to play quarterback in college.”
Last week was my 56thbirthday and the outpouring of best wishes from family and friends near and far was humbling to my heart. Unbeknownst to most, my wife and I were called to Duke Hospital for unscheduled blood tests and a visit with my oncologist earlier in the week, July 3rd. The timing was eerily similar to five years ago, almost to the day, when I received a phone call from Duke telling me I had leukemia…
It is February of 2018 already. Time flies, and I say that with all respect in the world for time, given that four-and-a-half years ago I sat in a room at Duke University Oncology with an IV in my arm delivering toxic chemicals into my system in hopes of beating down the leukemia cells that had taken over 95% of my blood.
It has been a full nine months since I started my fourth type of chemotherapy drug. My last bone marrow biopsy was in December of last year and revealed nearly 50% of the marrow was leukemia ridden, which is not a good long-term prognosis, thus leading my team of oncologists wanted to see how much leukemia was remaining in my blood and bone marrow with this recently approved new treatment
My wife is 41 years young, and she keeps our house running smoothly, especially in conjunction with our three kiddos: 7-year-old twinlets Leo and Ella, and 6-year-old Jordan. Recently, I had the responsibility of the kid’s dinner, bath-and-bedtime routine all to myself because my wife was having a sleepover. That’s right, an adult sleepover.
It has been quite the start to a new year already, this 2017. 2016 ended with ten weeks of outpatient intravenous chemotherapy before my family and I headed to Pittsburgh for the holidays. Unfortunately a bone marrow biopsy revealed that the drugs I was being administered did not make enough improvement against the leukemia, so we decided to start a different protocol.
It has been a challenging couple of months to end this summer for me as far as energy, focus, and activity goes. Last Monday, I went to Duke oncology for my routine blood tests that track how active the leukemia cells are in my system. It has been 22 months since I began the new “miracle drug” that has shown a strong ability to control the disease in patients with my diagnosis for up to two years. ‘So far so good’ has been our motto.
I sat there, marinating in thought and still slightly unsettled at heart. Perhaps I was anxious about my blood test, or troubled by the news on TV and concern for our country, or both. Just then I heard the voice in my heart again. "Scott, your soul has no color either. Color is your issue, not mine.” I looked up above the top of the Chapel.
There are lots of possible reasons for my forgetfulness but I have chosen to spend whatever precious mental and physical energy I have on things that I can control and things that have more long term meaning and significance. So, if you are ever talking with me, and I just blurt out "iguanas" and then chuckle, bear with me. I may or may not be able to locate the right word, but those close to me will know what I mean, and that’s really all that matters.
Individually, I realize that we can’t possibly help ALL of these causes in our lifetime, but I guess my realization is that perhaps we are each touched by some of these challenges in our lives so that we will be drawn into the battle that each one represents. Drawn into action to support families and patients of veterans, teachers or ex-offenders because they need our help.
I have so thoroughly enjoyed writing and sharing this blog with so many. The responses have been uplifting and inspiring and I am grateful. A few people have asked me why I write and what is the point to my offerings? The answer is DUPLICITY. The duplicity of preparing to die, and still preparing to continue to live. Let me explain.
What is on the other side of: opportunity, knowledge, racism, anger, cancer? I didn’t have the answers to these questions I was innocently collecting so I began to pray about them and ask for wisdom and insight. They seemed important enough that I should formulate answers. And over the course of the last few weeks, the Lord has whispered answers to me so gently...