“A Moment of Clarity.”
“How brain cancer made my purposes in life crystal clear” (step 2 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).
Find/define your purpose(s) in life, i.e., your motivation to begin and continue fighting your disease. Write them down.
After my craniotomy to resect my brain tumor (a grade IV glioblastoma multiforme, or GBM) on July 1st, 2015, I spent a lot of time recovering in Duke hospital’s neuro-ICU and being nursed back to health by Ashley in our new home, speaking with my psychotherapist at the Preston Robert Tisch Brain Tumor Center at Duke, soul-searching and looking for answers to questions that still remain unanswered. What did I do to deserve brain cancer? What DIDN’T I do to prevent it? Where did I go wrong? Perhaps more importantly, where do I go from here? I found myself craving nothing more than for life to return to NORMAL.
I wanted to be able to drive a car again, regain my independence, and end my reliance on Ashley for all of my transportation needs, especially to and from work and the Duke Cancer Center. Like the best nurse, Ashley regularly changed the dressings on my healing incisions, helped me with all of my activities of daily living, and made sure that I was eating three square meals a day while taking my numerous medications on time and in the correct dosages.
Like the best secretary, she kept track of my daily calendar of seemingly endless appointments for physical therapy, occupational therapy, psychotherapy, oncology follow-ups, lab work, radiation treatments, and managed the incredibly complicated system of health insurance issues and medical billing that still continues to haunt our mailbox. Like the best taxi driver, Ashley ferried me back and forth from the house to each and every one of my medical appointments and EMPOWER as I began to work again in a part-time capacity, all while managing her own work schedule at her regular day job as a Financial Advisor at Morgan Stanley. I know that Ashley would never say that I was a burden on her, but I certainly felt like I was – how could I not? I wanted to be able to walk down our new street and climb up and down the stairs in our new house without having to hold Ashley’s hand or the railing because I was suddenly a “fall risk.”
I wanted to feel like I knew where I was in time and space again, and to have my vision restored to normal instead of having the right half of my visual field cut off (a problem I am still grappling with to this day). I wanted to know where things were located (like my socks and eating utensils) and how things worked (like the appliances and light switches) in our brand new house that so far felt like the farthest thing from home. I wanted to be able to sit down and play the piano the way I always did and have it feel effortless and sound “right”; I wanted to be able to run, exercise, and play tennis with the same intensity and level of success that I once did; to be able to work a normal, full-time schedule and perform all of my job functions with the same energy and precision that I always did right up until June 26th, 2015.
On August 4th, 2015, I received an email from a very good friend, Kim Chapman Page, owner of Bull City Running Company in Durham, NC. She had heard the news of my recent misfortunes with brain cancer and thought to connect me with a good friend of hers, a fellow brain cancer patient and accomplished endurance athlete, Greg Sousa. In addition to being an Ironman triathlete and BMX champion, Greg made headlines a couple of years earlier by completing a 900-mile bike ride from North Carolina to Florida to raise funds for the Duke Brain Tumor Center (read his story here: http://magazine.endurancemag.com/HTML5/Endurance-Magazine-LLC-Endurance-Magazine-July-2014 ).
After a few brief email exchanges, Greg and I had our first telephone conversation with each other, and already he was teaching me some very important lessons on how to cope with and manage the situation that Ashley and I had just found ourselves in. By making himself immediately available to me as a sounding board and source of invaluable advice, he became an instant role model and hero for me. Greg taught me not just how to LIVE with brain cancer, but more importantly, how to BE with brain cancer. As a brain tumor patient, Greg was also a member of the Planning Committee for the annual Angels Among Us 5K that benefits the Preston Robert Tisch Brain Tumor Center at Duke – a committee that Ashley decided to join as well promptly after we learned about it. Through their monthly committee meetings, Ashley had the privilege of getting to know Greg a little bit better. When I finally had the opportunity to meet Greg in person myself for the very first time, Ashley and I visited him at the Duke Medical Pavilion where he was recovering in a hospital bed from a brain biopsy operation; he had just experienced a recurrence of his brain tumor, an oligodendroglioma, a different variety from my own but equally aggressive.
My admittedly brief interactions with Greg had an enormous positive impact on my psychological state early on during my brain cancer journey. Whether he intended to or not, Greg and his story provided me with the motivation and inspiration I needed to take my fight to the next level. It became immediately clear to me that one of my main purposes in life would now be to beat brain cancer and to use my story to motivate and inspire others who might find themselves in a similar situation. The last time that I spoke to Greg, he was resting in a bed at a hospice facility following a second recurrence of his brain tumor, and on July 14th, 2016, after a four-year fight my hero Greg Sousa sadly lost his battle with brain cancer.
It is clear to me that my primary purpose in life is to be the best husband, teammate, and life partner that I can possibly be to Ashley, who demonstrated unequivocally what it means to be there for the person you love, unconditionally. It is also clear that my secondary purpose in life is to motivate and inspire others who may have received a cancer diagnosis or experienced some other life-altering event.