“How brain cancer taught me that accomplishing my goals and getting my life back to ‘normal’ doesn’t always have to look exactly like how I originally envisioned it in order for me to feel fulfilled.” (step 6 of my 8-step plan to get you back on track towards pursuing the life you envision, despite a cancer diagnosis or other major life-altering event).
Garner social support from your partner/spouse/significant other, family, friends, co-workers, and community. Tell people about your goal(s).
It’s all about ACCOUNTABILITY, stupid!
I can’t even begin to count how many times in my life that I’ve dreamed up some kind of big, lofty, audacious goal, told myself that I’m going to do it, promptly found every excuse in the book as to why I should NOT do it, and then convinced myself to abandon the idea almost as fast as I committed to it. How much harder is it for you to back away from doing something that you’ve told someone ELSE that you’re going to do as opposed to just yourself? What good is it to declare a goal if nobody else knows about it? I know that it is way more challenging for me to be held accountable to someone else than it is for me to hold myself accountable for something. How impeccable are you with YOUR word?
In an earlier blog post, “Picking Up the Torch,” (https://becomepowerful.com/2018/02/28/picking-up-the-torch/) I mentioned that I was given the unique opportunity of being featured in the cover story of the July 2016 Cancer Awareness issue of Endurance Magazine (http://magazine.endurancemag.com/HTML5/Endurance-Magazine-LLC-Endurance-Magazine-July-2016), and in that article I outlined three of my major life goals for the short-term, goals that I had set BEFORE being diagnosed with brain cancer and that I was still very passionate about: I wanted to complete the Umstead 100 Mile Endurance Run with Ashley as my crew chief; I wanted to climb Mount Kilimanjaro and take an African safari with Ashley; and I wanted to start a family with Ashley.
By declaring these goals in such a public forum, I essentially had the entire readership of the magazine to hold me accountable for my goals. Now, I know that not everybody has the good fortune of being invited to write an article for a magazine, much less to even have it published in both print and online formats, but that was the opportunity I was given and I chose to take maximum advantage of it so that I could do the most good with my story. Fortunately, the digital online format of the article also made it super easy for me to share my story instantly with anybody and everybody across the entire planet.
With the help of modern social media tools like Facebook, email, and my company’s website, I blasted the news of my article to hundreds of Facebook friends and family. They then proceeded to share the article with their friends and their friends’ friends, and so on until people whom I’ve never heard of all across the country (and probably the world) were reading it and expecting me to follow through with the goals that I set out to accomplish.
Recently, I discovered that if you were to “Google” my name, Nestor Paonessa, the very FIRST search result that pops up is actually my Endurance article! To date, I have been contacted by several well-intentioned strangers (mostly fellow brain cancer survivors) from all across the country who have read my article, were positively impacted by my story, and were inspired to continue the conversation with me on a more personal level. How cool and rewarding is that?! I had no idea how far and wide my story would reach, or that anybody outside of my circle of friends and family would even care to read it, and I have been absolutely blown away by the response! These experiences have also reinforced my secondary purpose in life that I asserted in “A Moment of Clarity” (https://becomepowerful.com/2018/01/26/a-moment-of-clarity/): to motivate and inspire others who may have received a cancer diagnosis or experienced some other life-altering event.
Another part of life that has become part of this “new normal” has been meeting and connecting with other brain tumor patients whose stories are just as motivational as, if not more than, my own. Perhaps the most powerful and inspiring of these stories is that of my good friend and brain cancer brother, Sean Bunn. Sean is the son of a friend of a friend of mine who heard about my story and thought to connect us. Sean’s brain cancer story began when he was diagnosed in late 2015 with a much larger baseball-sized grade IV glioblastoma multiforme brain tumor.
The tumor was mostly removed through surgical resection, but after a few years of chemotherapy treatment the remaining tumor eventually became resistant to his doctors’ efforts to keep it from growing. But wait – Sean’s REAL story actually began a LONG time before this whole brain cancer thing. When Sean was a college undergraduate at the University of North Carolina at Chapel Hill, he chose to become a sperm donor. Little did he know that two biological daughters would be born as a result; one locally in North Carolina, and one clear across the country in California. Coincidentally, about one year ago both daughters, now adults, were trying to learn about their biological father. Through a combination of genetic testing companies and internet message boards, the two daughters miraculously found each other first, and then they decided to join forces to find their biological father together. (http://www.wbur.org/commonhealth/2017/05/03/sperm-donor-meets-daughters)
When they finally found Sean, they discovered that he was locked into a fight for his life against brain cancer. The newly-connected family promptly met in person in North Carolina, and an elated and eternally grateful Sean Bunn proclaimed, “maybe this is why I’m still alive,” so that his two biological daughters could find him.
As it turns out, Sean’s daughter in California already had a son of her own, Sean’s biological grandson, which made Sean’s parents both instant grandparents AND instant great grandparents!
Sean’s daughter in North Carolina was also preparing to get married herself in mid-April of 2018. However, around late March/early April, Sean began to experience a very rapid decline in his health as his brain tumor continued to grow. Speech was becoming much harder for him, he lost his ability to walk unassisted, and he was ultimately admitted into a hospice facility where he was only expected to live for about two more weeks (he would end up fighting for almost seven weeks more). There, his decline continued to the point where he was no longer able to swallow food and he was resigned to eating through a feeding tube. It was here that Sean expressed to his father Ben that he still had two goals that he wanted to achieve before his time on Earth ran out: he wanted to meet his grandson, and he wanted to see his daughter get married.
Ben immediately got to work on the phone. Sean’s daughter in California booked a flight and brought her son over to meet Sean at hospice where they all spent a fine afternoon together talking and playing with Sean, and of course they took lots of photos. Check that box. Sean’s daughter in North Carolina then packed up her fiance, her parents, their minister, their DJ, and the cake, and moved everything and everybody to Sean’s hospice facility in Cary, North Carolina. Hospice personnel wheeled Sean’s bed into the hospice chapel, and there the young couple exchanged their wedding vows right in front of Sean. Later, Sean’s bed was converted into a wheeled chair and Sean partook in the traditional “first dance” as his dad pushed him around the room. With the music playing in the background, Sean’s newly-wedded daughter held his hands and danced around him. Check that box!
After the hospice chapel wedding, Sean turned to Ben, gave him his signature “thumbs-up” and said, “Dad, I’m good… I can die now.” On the weekend of May 5th and 6th, after his doctors gave him just hours to live, Sean continued his fight for three whole days more. On Tuesday, May 8th, 2018, at the young age of 48, my hero Sean Bunn passed away peacefully in his hospice room surrounded by his parents and loved ones. This day also just so happened to be my own 37th birthday, and it is certainly another birthday that I won’t soon forget.
As a lifelong superfan of the Boston Red Sox, Sean was known locally as the governor of the fan group Red Sox Nation – North Carolina. Sean was also known for using his connections and good standing with the Red Sox organization to make sports-related dreams come true for local children and terminally ill Red Sox fans. In August of 2017, for his 48th birthday (which would sadly be his last), Sean was invited by the Red Sox organization to attend a baseball game at Fenway Park, and he was honored by throwing out the ceremonial first pitch – a dream come true for Sean to be sure!
As you can see, Sean truly made the most of the last of his time here on this Earth, and I believe he would have told you that he had absolutely no regrets. Even in the waning moments of his life, while staring death in the face, Sean still found ways to create and experience the life he envisioned; a life that was good enough to satisfy him to his core.
(A note about the photo accompanying this blog post: This was the last time I actually had a conversation with Sean – he was in Durham with his parents for an oncology appointment, and we all met at the food court on Duke’s campus to catch up over lunch. At one point in the conversation Sean turned to me and said, “I don’t understand why you’re doing so well… and I’m not.” I know it wasn’t his intention to instill any kind of guilt in me, but if there ever was a prime example of “survivor guilt,” this was it; Sean’s words will echo inside me forever. To this day, I still don’t understand why either, but if I had to venture a guess, it would be for the same reason why he was able to live long enough for his daughters to find him and for his parents to learn that they were now grandparents and great grandparents with a whole new family; because there was more good for him to do in the world, and more lives for him to touch positively; more people for him to inspire and motivate; more of his legacy left to create and leave behind.)