When your body betrays you (or starting my battle with brain cancer)

Note to the reader: This post is a bit of a departure from previous writing I’ve done here related to creativity, making, engineering, teaching, craft etc. It’s a much more personal attempt on my part to begin to come to terms with some major life changes I’m facing as the result of a sudden change in my health. If reading about cancer is upsetting to you, maybe skip this one. On the other hand, if you can relate or you’ve got an experience you want to share with me, send me an email or leave a comment.

A few weeks ago, I was interviewed by the always thoughtful and engaging, Jay Margalus, for his podcast, “This Should Work.” I met Jay through a professional development course on designing makerspaces that I helped teach in partnership with Venturewell at Georgia Tech last year. We have substantial overlapping interests in makerspaces, educating students through making, and just generally the transformative power of experiential learning. Prior to our interview I had actually asked Jay to reschedule because I’d been feeling a pervasive brain fog that I had (mistakenly, as you’ve probably guessed from the title of this post) attributed to a sinus infection. As Jay and I chatted before he started recording, I joked with him that my wife had saved me from my inner hypochondriac (whose natural tendency was to think I had a brain tumor) by suggesting that I might just have a nasty sinus infection.

Jay and I had a stimulating, wide-ranging conversation for the podcast and he hipped me to some ideas and authors that I’m keen to explore in the near future. But, I couldn’t shake the feeling that my brain was still foggy even after finishing a course of antibiotics that were supposed to nip the sinus infection in the bud. Five days after recording the podcast, I came home from attending a talk at Olin and ran into the house to grab a grocery bag so I could pick up a few things at the store for a special birthday breakfast for my son the next day. Maybe 20 minutes later I woke up on the floor of my kitchen with absolutely no recollection of how I got there.

After a phone call to ask my wife to come home and accompany me to the emergency room, I somehow managed to hold up my end of a 15-minute conversation with a colleague about the talk we had both attended earlier that morning. When my wife arrived home from her work in Boston, we discovered that my car had been sitting in the driveway running the whole time. After we turned it off, we set out for the emergency room at Newton-Wellesley hospital. A short while and one CT angiogram (fun fact: the contrast they inject you with to improve the brain imaging makes it feel like you’ve momentarily pee’d your pants) later, I heard the words “You have a mass in your brain.”

Some very fine EMTs navigated evening traffic in Boston to get to me to the Massachusetts General Hospital emergency room and an MRI (this time with contrast that doesn’t make you feel like you’ve pee’d your pants) helped the surgeon prepare for a craniotomy, the goals of which were to biopsy and remove as much of the tumor as possible. The next day, my wife and son and I celebrated his sixth birthday in my hospital room as I waited to be added to the surgery schedule. The evening of the day after my son’s birthday, they wheeled me into the O.R. and pumped my body full of yet another type of contrast that would make my tumor glow pink in low light. Modern medicine is wild!

A little over a week after the surgery, we got the pathology report back indicating that my tumor is a pretty aggressive form of brain cancer called glioblastoma, a cancer for which the average age of diagnosis is 64 (let’s not even get into prognosis statistics, ok?). Needless to say, at an otherwise relatively healthy 41, I am an outlier for this diagnosis. In many ways that works in my favor, but most important to remember is that statistics for this diagnosis are based on a population that’s very different from me (in addition to reflecting outcomes from old standards of care). So inferring anything about me, specifically, from those aggregate numbers is pretty unreliable to say the least. Another little interesting detail is that the pathology report was positive for something called methylated MGMT promoter which suggests the current standard of care will be more effective than if the MGMT promoter enzyme were not methylated. Essentially what this means is that there’s not debate about what the best way to treat my cancer is. Every little bit of good news helps.

So, what lies ahead? Well, in about one week I’ll start a six-week course of combined chemotherapy and radiation therapy, and can I just tell you, I loved geeking out about how the radiation treatment is designed and delivered with my radiation oncologist. After all, I’m an engineer, but this stuff is damned-near science fiction. They’ve imaged my brain with a CT scan and an MRI and they’ll overlay those data to build a 3D model of my brain and what remains of the tumor. Using what I can only imagine is the most badass multiphysics optimization software out there, my radiation oncologist will design a configuration of beam locations, orientations, and intensities such that the superposition of several beams will result in a beam shape that primarily hits tumor while avoiding other kind of important brain anatomy like my visual and motor cortex, inner ear, optical nerves, etc. They even made me a pretty sweet mask that stretches over my entire face and snaps onto the table of the beam delivery machine to reliably place my dome in the same spot day after day. After the 6 weeks of daily radiation five days per week, I’ll start six one-month cycles of chemotherapy only. Throughout all of this, I’ll be getting regular lab work and MRIs to monitor my white and red cell and platelet counts as well as the size of what’s left of the tumor.

No more complaining about Boston…

Over the eight plus years I’ve lived in Boston, I’ve talked a lot of s#&! about this place from the ridiculous obsession with professional sports teams and the pervasive sense of inferiority to New York to how the crumbling, outdated infrastructure encourages and amplifies obnoxious behavior (particularly when it comes to driving/transportation). But, I will say this: I have the best damned care team on the planet here at MGH, and I’m looking forward to fighting like hell to beat this cancer. Wish me luck!