I have heard the diagnosis of a brain tumor twice. The diagnosis from my first brain surgery in January, 1994 was good: a benign grade II Astrocytoma in the right frontal lobe. I was a 28-year-old father of one.
The diagnosis from my second brain surgery in May, 1996 was not so good: Glioblastoma Multiforme (GBM) in my right frontal lobe. I was a 30-year-old soon-to be-father of two.
Brain cancer. I was devastated.
I was fearful of what six weeks of daily radiation to my right frontal lobe could mean for my teaching career (the right frontal lobe is where executive function is located), but most of all, I was terrified by the likelihood of no longer being a dad or a husband.
Two weeks later, our son was born with Spina Bifida. That was a surprise.
May, 1996 officially won the prize for the worst month of my life. It seemed impossible to look ahead after receiving two life-altering diagnoses in a two-week span.
That last sentence is crucial to my story. Surviving a GBM for 22 years is unheard of; I do not say that in a boastful way. Quite the contrary! If I had the answer to how I have survived this long, I would share it with the world.
I think about this a lot and I have arrived at some clues that may lead to an answer. In no particular order, these are likely the key ingredients to my survival (these clues are relevant to any brain tumor diagnosis, not just a GBM).
When friends (and people who would soon become friends) heard about the cruel combination of diagnoses, they organized a dinner calendar that resulted not only in a variety of delicious dinners delivered to our door, but also a constant stream of concerned and generous people. We invited them in.
Accepting the generosity of others can be a challenge because it reveals a vulnerability that some may be uncomfortable with. I accepted the love of others and ate a great meal; we let our friends run errands for us; we accepted my mother-in-law’s babysitting offers so that my wife and I could go out for dinner.
For my 50th birthday, our best friends hosted a party with an exclusive guest list: two other couples who have been with us on the journey. I decided to say “I love you” to each of these friends because we don’t say “I love you” often enough.
Saying those words was immediately therapeutic for me and continues to give me a surge of positive energy. I have expanded my I love you list to include my extended family, as well as friends who were not invited to that party.
If it takes a brain tumor to get you to express your love to others, well, so be it.
Depending on the location of your brain tumor, and the side effects of your treatments, focusing on what you liked to do pre-diagnosis, and still can do, is an integral part of recovery. The same is true of aspirations such as learning guitar, traveling abroad and volunteering in your community. There’s no sense in waiting! Undertaking these activities has given me a sense of normalcy and a shape to my days.
Before my GBM diagnosis, I took it for granted that I had an abundance of new days ahead of me. Now, I certainly savor each new day. I feel fortunate that my GBM created unexpected pathways to a deeper understanding of how bad news can transform into good news. My perspective on life continues to evolve in profound ways because of my GBM. I have an unusual appreciation of growing older; I am more deliberate in how I devote my energy and time to certain relationships and causes. I love more. Simply put, I am more awake to what matters most in life.
An honest assessment of my personal growth since my diagnosis would reveal much backsliding and days that just didn’t work out. I don’t want to sound like I’ve got life all figured out. Far from it!
The most powerful lesson that I have learned is that it is far more important to focus on how to live the days of my survival than to count them.
I registered and trained to become a peer mentor through CommYOUnity™ Connect because I understood that the shock of a Glioblastoma Multiforme (GBM) diagnosis creates an abundance of questions that only someone who has received that same diagnosis can answer. As one goes through the treatments, the questions and concerns only grow more numerous.
Unfortunately, CommYOUnity™ Connect did not exist when I was diagnosed with a GBM. I remember feeling isolated at the time because of the frightening statistics that accompany this diagnosis. I was sure that this was only happening to me and no one else could help me, which could not have been more wrong.
If this program had existed when I was diagnosed, I would have known that I should not be alarmed by the burning sensation from the chemotherapy drug I received intravenously. I also would have been reassured by someone with personal experience that my fears of leaving my young family and missing the milestones of parenthood and marriage were perfectly normal.
My experience as a peer mentor to brain tumor survivors has been enriching beyond anything that I could have imagined. I am genuinely honored that I can accompany someone on a journey that is both intensely personal and extremely challenging on a daily basis.
The telephone is the only way that I communicate with my mentees, given that CommYOUnity™ Connect participants come from all over the country. In this era of smartphones, I always text my mentee to see if this is a good time to chat. Our conversations have lasted from two minutes to two hours.
There is no right or wrong way to have a CommYOUnity™ Connect conversation. There is no formal structure that must be achieved every time we talk. I have had mentees call to confirm what my secret ingredient is in my chocolate chip cookies (oatmeal!), and call back two days later to discuss how to deal with the fatigue they see in their partner/caregiver.
It is important to know that the subject of these conversations is not always medical! I am a huge Chicago Cubs fan, and I currently have a mentee who is an equally huge Cleveland Indians fan. We talk a lot about baseball. It’s always a relief to talk about something other than a brain tumor.
I am continuously surprised at how quickly and easily relationships are built with each new mentee. A sigh of relief is almost audible in every first conversation. That sigh of relief comes not from anything that I heroically offer, but from a place deep in the heart of the mentee: Finally! Somebody gets it.