If anyone would have told me I would enjoy my journey with GBMG4 as much as I have, I might have told them they were nuts. But it is true, I have thoroughly enjoyed my journey and hope that in some small way my story can inspire others. A word about “journey”: When it comes to cancer, we hear about a fight and a battle. So far, I know I am in a fight, and battles will need to be fought, but thus far, I have not needed to dig that deeply other than to deal with the emotional aspects of what I can most accurately describe as my journey. Although I do not believe in scorecards, I do know so many who are dealing with other cancers and/or treatment protocols that are more demanding than mine. They are my inspiration and they are warriors!
Along my journey, I have discovered the need to make certain decisions. I offer them here in hopes that others might use them as a checklist if they find themselves in a similar situation. And, by similar, I do not mean an incurable (today) brain cancer; I mean any health related, or life, challenge. Again, and maybe Soapbox 1.5, I look at life through a lens that we all have our crosses to bear. The challenges parenting causes one person are no more or less than the challenges of dealing with a terminal disease. For me to say otherwise would be unfair. I recall the days from not so long ago where the paths my sons are taking/might take were of great concern. There may be no greater challenge today than setting our children on the right path. Likewise, relationships present significant challenges, be they personal or professional. The stress of a job is real, and I have 30 years experience to back that one up. My situation is just different, not bigger or smaller than any of yours.
Decision 1: Given my uncontrollable diagnosis, what can I do? Well, I cannot change the past, but I can control my future to ensure I am fighting as hard as possible. So, I have started to honor the mind-body-soul connection more than I ever have in my life. (Word to the wise, do not wait on this one.!) So, I changed my diet based on the reading I did. Plant first, lean protein, low to no sugar and white flour, new spices, and hydration focused. (What I should have been doing all along.) I also have essentially given up my favorite beverage, India Pale Ales.) After 20+ years working on my beer belly, I am 30 pounds lighter and am up to a 5 pack in abdominal muscle tone, splitting #5 into #s 5 and 6 will take a bit more time. :) I can (and must) control my activity level and my stress leves. Since diagnosis, I have traveled, skied, played ice hockey, walked miles upon miles, restarted weight training, all while wearing my Optune device and managing ongoing chemo treatments.
Decision 2: Do I trust my Care Team? Yes, I do. The doctors, nurses, technicians, and pharmaceutical company representatives I have supporting me, deserve the utmost respect and appreciation. I cannot express enough how amazingly competent and supportive they have been, nor how it is only through Christ that they are able to carry out their jobs on a daily basis, not knowing which patient will ascend into heaven on any given day. (I will spare you Soapbox #2: Cancer Cure Conspiracy Theories...for now at least.)
Decision 3: What is my purpose? Got it. God’s plan is for me to have this specific variety of brain cancer. And now that I have it, His plan for me is to advocate for myself, to control what I can control, and to keep the long term in mind: high school and college graduations, careers, marriages, house purchases, grandchildren, flourishing new relationships, and the opportunity to pass along the wisdom I have acquired through God’s grace to my children and the humbling number of friends and colleagues I have been blessed to come to know throughout my life.
Decision 4: Why me? I have spent no time asking why me, or wishing someone else had gotten this tough version of brain cancer. Many have, and that is also God’s plan. Rather, I find myself asking myself, why NOT me? I am ready to participate in the research for a cure in whatever way I can physically and emotionally sustain. I have also gotten past the point of wondering if I deserved this, given some of the missteps I have made in my life. Rather, I see this journey as a revelation of my true purpose in this world. I have been reminded by a very close friend and his new wife, the forgiveness and salvation we receive as Christians. I’ll admit the practice of my Faith has ebbed and flowed with the events of my life. I needed a reminder that my sins have been forgiven and that , no matter how broken we feel, we are always welcomed by our God. (I know I might be treading into controversial territory, but I have Faith and believe God has a plan for me. I turn myself over to the Holy Trinity, and through this, I am completely at peace with the hand I have been dealt. (I am just trying to figure out if I have been dealt a straight flush, a full house, or pair of deuces I need to bluff my way through to continue playing.)
Decision 5: What attitude will I adopt?
I had a few days following diagnosis when the reality of my diagnosis made me tell my loved ones that I was just flipping scared. Then, I thought I had a conscious decision to make about the attitude I would carry forward. So, remembering what my oncologist told me, I decided to adopt a positive attitude. Positive that I would beat the numbers, positive that I could be the first person ever cured of this tough ailment. Positive that I want my legacy to be one of hope and reconciliation. So far, I think this decision alone has completed the mind-body-soul circle in the best possible way for me. I have asked myself if I am being delusional and I have concluded that I am not. I know exactly what I am up against, but there always needs to be a first to be cured. So, why not set that as my goal?
Decision 6: How wil I spend my days?
I walk a lot. And, while I walk, I talk to the humbling number of friends and colleagues I have been blessed to have in my life. Telling my story, and jumping up on a couple of soapboxes from time to time, keeps me positive and energizes me. While hearing that my attitude and positivity is inspring for some is nice, I realize it is God’s plan for me to impart that feeling to others. I also ensure I follow my treatment protocol to the T, knowing that the longer I can survive this disease, the longer God will work through the very smart and talented scientists in the world to find a cure for those whom He has chosen to endure this ailment.
I “live every day to its fullest”. My definition of that may be different than that of some of God’s other children. I have a “bucket list” as they say. It does not include jumping out of an airplane or bungee jumping in New Zealand. It does not include traveling to the far corners of the Earth. It includes having positive conversations, showing strength and positivity in the face of potentially daunting statistics, counseling and mentoring, and working to deepen my Faith. And, it includes playing in as many adult hockey tournaments as I can with my hockey mates, and maybe playing golf at a few US Open courses across the country.
Next up...results of 3/19/19 MRI scan.
