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!

22 Responses

  1. Aaron… There are a lot of folks thinking about you and wishing you well. You are strong enough to kick ass on the D2R2, you are strong enough to beat this.

  2. Was the radiation oncologist constantly saying “finally, someone who wants to learn about the engineering side?” I imagine you’re an outlier there as well.

    1. Yeah, he actually said “I think you’re really gonna like this,” when I asked him to tell me how the radiation is actually delivered. His dad is a mechanical engineer who also graduated from Berkeley. Nice little bonding moment.

  3. Aaron I have been keeping you in my thoughts and am happy for this update. Way to find passion in your next life challenge!! Happier that you now have found purpose in Boston although would rather have heard you were a Tom Brady convert. Stay strong my friend. Look forward to hearing more on your journey !

  4. Sending good thoughts in your direction Aaron! MGH is an incredible place and you’re in the best hands. Picture those doctors going after that tumor with the same ferocity as Bostonians in daily life: on the T in a broken down red line car for half an hour, changing lanes in Storrow drive, defending Tom Brady on Twitter, watching neighbors snow blow onto their driveways, and much more.

    (PS: Go Sox!)

  5. Well, this is a crummy way to bring the beauty of the world sharply into focus. I wish you the best, old friend; I’m sending you positive vibes. Also glad to know you haven’t become a Patriots fan. 🙂

  6. Aaron, I wish I could send a photo instead of trying to articulate my words. Today, I learned of your new challenge. I read through your recent blogs and when you wrote about music, it struck a cord. I pulled out your “greatest contribution to the world”, I think you called it. I came across several other Lake Rats mixes from Sarah, Marc, and Jesse, inspired by Staring at the Stars, of course. As I read through the titles of songs, many amazing memories came flooding back. I wish I could send a picture of the tapes and titles. Not only will the titles make you feel old but the fact that I can’t even listen to the tapes makes me feel ancient. I just wanted you to know that we are thinking about you and sending positive thoughts your way.

    1. Katie, this is so awesome. Thank you for the fond memories and positive thoughts. I will always treasure my memories of making and listening (over and over) to that mix tape. I also find it pretty hilarious that even if I still had a copy, I’d now have no means of listening to it. In some weird way, that transience makes it even more special.

  7. You would be happy to know Scott’s copy is kept in the orange boat he inherited from his dad. ❤️

  8. True. The only tape deck I own is in the orange 1975 Arrow Glass; so that’s where I now store my cassettes—in the shoe box that originally contained the first pair of Doc Martens I ever owned. Damn, time has flown.

  9. Though I didn’t get a chance to get to know you well outside of Controls, I fondly remembered your class and how fun you made the material (especially compared to the related 4 grad classes I took :p). I can only imagine, with your passion and dedication, how awesome your more recent classes are. I admire your positivity and it makes me realize that I still have more to learn about how to handle the challenges life throws my way. Wishing you and your family a speedy recovery!

    1. Stan – it’s great to hear from you! I can’t believe it’s been 8 years since I taught that class. Thank you so much for your kind words (the messages I’ve been getting from alums have been incredible, helping to remind me of the depth of my love for my work and the Olin community).

  10. Stan passed along this news — I was shocked and saddened to learn this happened to you. Just wanted to add my voice and say that the work you do for the Olin community is greatly appreciated. I still remember the Mech Proto class you taught for us, and — despite your calling me a hipster — fondly remember the lessons on mechanism design you taught us. Wishing you the best of luck and a quick return to health.

    1. Oh no, Zach! My sincerest apologies for the hipster comment. Please accept this highly relevant achewood comic as a token of my apology! And, also, thank you for your words of appreciation and encouragement. I’m sorry I didn’t get the chance to see you at your Olin talk, but the poster for it looked amazing. I hope California is treating you and your brother well these days.

    2. It’s probably the Ultimate team’s fault from Controls when we ragged on Aaron about being a hipster. :p

      1. And I am still glad I never came to one of your workouts (despite being invited personally many times by Alex Niswander)! 😉

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