“Always remember, there was nothing worth sharing like the love that let us share our name.”
Those lyrics are from one of my favorite Avett Brothers’ songs, “Murder in the City”. Providing instructions to loved ones in the event of your untimely death is something most people my age (38) don’t have to seriously contemplate. I’m in the minority that has had to do just that.
Last fall, I started getting intense migraine headaches. After trips to three hospitals, at Mass General we finally got definitive word that my symptoms were caused by brain cancer. On Nov. 29, a phenomenal neurosurgery team at MGH performed a craniotomy and removed a large tumor from my right frontal lobe. It was the size of a small human fist.
Just before my operation, I’d learned that high-grade glioblastomas have a 5-year survival rate of 10%, and a median life expectancy of 18 months. As a healthy 30-something, this was hard to fathom. As the loving father of two amazing daughters (aged 4 and 6), as a devoted husband, and as the primary breadwinner for my young family, this was hard to accept. Harder still was hearing a week later that the pathology report indeed showed it to be grade 4. This meant the successful operation was not a cure.
Six weeks of intense radiation treatment (with chemo), and ongoing monthly chemo, would follow, as would the final pathology report that would include the detailed genetic analysis. Incredibly — and despite an initial test to the contrary — my tumor, though technically a grade 4, had a specific genetic mutation known as “IDH-1”. This meant that, unlike with most high-grade brain tumors, the radiation and chemo could be expected to be effective at destroying any microscopic traces of cancer and keeping recurrence at bay. My prognosis changed from grim to simply unknown but hopeful, my condition from terminal to manageable. Given my relative youth, physical strength, improved diet and regular exercise, there’s no reason to believe I shouldn’t live a long and healthy life.
I spent my 3-month medical leave physically recovering and spending my days with my family. It’s impossible to describe my gratitude, appreciation, and overwhelming love that I feel, daily, for my amazing daughters and incredible wife. There is so much beauty around us, so much love, so much to be profoundly grateful for every day. But too often as fathers, as parents, we don’t appreciate what we have.
Six months have now passed since my surgery. I’m still on my monthly chemo regimen but am happily back at work. My first bimonthly scan thankfully showed no signs of cancer growth, and my second — surprisingly — even showed no traces of radiation’s after-effects. For all intents and purposes, I have a normal, healthy brain.
The perspective I’ve gained from this experience has changed me in so many ways. Some of them are outwardly visible (as I’ve become mostly-vegetarian and taken up running, losing about 25 lbs in the process). Others are more subtle (daily meditation, and an increased level of acceptance of life’s many uncertainties and challenges). But I feel, and hope, that I may have become a better father in the process. I also owe a large debt of gratitude to my own father, for his abiding love and calm and presence throughout my ordeal. He’s an incredible role model and I’m so lucky to have him in my life. For my own part I still am prone to getting frustrated and annoyed with my daughters’ behavior. But mostly I’m just so deeply grateful for our shared lives. And I hold them close and tell them, many times each day, how much I love them.
On this Father’s Day, I’d ask the dads among my friends and family and colleagues and broader social network, and you readers, to pause for a moment and imagine your own life hanging in the balance. Picture your children and your spouse faced with the prospect of life without you. What would you want them to remember about you? What message would you give them? Maybe instead of waiting, today would be a good day to tell them. There’s no time like the present.
[P.S. This post was the first version of a piece I wrote for my company’s blog. It went through a bunch of iterations, eventually published at http://blog.care.com …but I wanted to share this version too. So here it is. :)]