It’s Been a While

In glioblastoma land no news is not always good news. I suppose it depends on the definition of “no news.” Stable scan with no changes? Good news. Me not posting any blog updates? No bueno. No sir.

Last we left off, I was staring down my first recurrence. I’m not going to lie, I was pretty terrified. The team and I settled on surgery and then Big R and I started hatching plans to ship off to Germany to get a personalized vaccine that would hopefully help alert my immune system to the presence of the tumor allowing my natural defenses to start fighting the cancer.

A Well-Deserved Rest

Feeling good, Big R. and I took a calculated risk to make good on our 10th wedding anniversary plans to escape to a Japanese spa in the mountains outside of Santa Fe. It was near-peak COVID-19, but I live now…now. We flew to the midwest to drop off Little R with his Nana and then took a train across the plains and the southwest to arrive in Santa Fe. New Mexico’s virus numbers at the time were very low and train travel seemed optimal for avoiding contact with others. It was AMAZING! The train ride was beautiful and meditative and when we arrived in Santa Fe, we lounged in outdoor spa tubs, sat in saunas, ate our fair share of Japanese food (and of course chiles), and breathed that dry, refreshing mountain air that smells of sage and pine. Perfection.

The Game Changes AGAIN

After we got home, I had an MRI on July 11 (the last one in the gallery below). The tumor had grown substantially in just two and a half months! Dr. D. concluded that meant the cancer had mutated sufficiently to be resistant to the chemotherapy. Glioblastoma is no f’n joke!

Pivot! Time for a new plan. It was going to take several months of lead time to have the vaccine manufactured and then at least another several months to know if it was working. Given how quickly the tumor had grown in just 2.5 months, those were months we were not willing to gamble with. With the help of Dr. D. and now Dr. W. at the Dana Farber Cancer Institute, I was accepted into a clinical trial. The trial consists of getting an infusion of the drug, Pembrolizumab (Keytruda), a so-called immune checkpoint inhibitor intended to enable my own immune system to attack the tumor.

After the first infusion, I had my third surgery to remove as much of the the tumor as possible. Glioblastoma is insidious, though. It comprises some “solid” tumor that’s relatively easy to see and some wispy tendrils that infiltrate surrounding tissue and are impossible to detect. So, surgery never gets everything. The latest surgery will be followed by an infusion of the drug every 21 days until I show disease progression or the trial analysis period closes. Apparently, getting the drug before the surgery has shown improved progression-free survival times compared to patients who only get it after.

The New What’s Next

The third craniotomy is now in the books. I just don’t have the post-surgical MRI to post yet. My sutures came out out yesterday. I may even be able to wash my scalp tonight more than 2 and half weeks after surgery. It’s the little things, people. The little things. In the next week or so, I’ll get another infusion and another MRI to see how things look inside this ol’ dome.

Do the Next Thing

In some ways I’m sort of grateful to be back in a structured regimen. The scariest thing about completing radiation and chemo was the absence of a “next step.” On the trial, there will always be a “next thing,” and that’s reassuring to me.

In the meantime, Big R has been generous enough to read to me books like “Anticancer” at night so I can take some steps toward a more integrative approach. I’m trying to find more inner calm, to improve my diet (Goodbye, Keto, it was decidedly not fun while it lasted.), to move my body more, to get adequate sleep, and to use social interactions to feel more connected to the people in my life who care about me.

What more is possible? I guess we’ll see.

30 Responses

  1. Wowsers. And sobering. This journey has too many twists and turns! So many people pulling for you. Keytruda is showing lots of promise in lots of treatment plans. I’m probably switching from chemo to pembro/Keytruda for my (colon cancer) recurrence starting next week. One step at a time, and you’ll push this terrible thing into remission!

    1. Thank you, Mary. Here’s my ask: make sure you let all the other amazing people in your life know how amazing they are as well.

    1. Thanks, Cass! Every day I work to try to get brain cancer into the bin. The cancer-killing vibes from down under can’t hurt either.

  2. You are the strongest person I know. All of us Olin peeps are your biggest fans and we are all rooting for you. You are not alone.

  3. I have been thinking about you nonstop. Thank you for updating us, even though this had to be nearly impossible to put into words. I’m sending every healing, peaceful vibe your way. On a positive note, I’m so glad that you and R took your anniversary trip! Your strength amazes me and inspires me, and I’m sure that everyone else at Olin, and in every other part of your life, feels the same way.

    1. Thanks, Sarah. Healing and peaceful vibes are most welcome. The anniversary trip was amazing – lots of moments when I nearly forgot I have cancer.

  4. Yes we are all rooting for you. You seem to get some strength from narrating the experience. Thank you for sharing it, especially when it’s difficult. Sending you positive thoughts.

    1. Indeed, writing about my experience is a helpful way of processing all this craziness. Thank you for the positive thoughts – I’m incredibly lucky to receive so much support from the Olin community.

  5. Thank you for sharing this unimaginable journey. Sending continuous positive vibes and prayers for healing and increased strength to you and your team! We are with you. Hoping some “little things” bring you peace and calm today!

  6. Hey Aaron – thanks for sharing all this. I was telling someone at Olin the other day how you and Big R were the only Oliners to brave a blizzard and make it to my 40th birthday. Sounds like that “up for anything” resiliency has been kicking in for you. Sending lots of positives thoughts and vibes your way!

    1. That seems like a lifetime ago! My first year in Boston, and I was like “Oh – it snows in October here…”

  7. Thank you for this update — what an incredibly challenging situation. Sending you lots of support and holding you in the light.

    1. Thanks, Amy! I was thinking of making a nerd joke about radiation and being held in the light. Instead, I’ll be earnest and just say “thank you.” It means a lot to me.

  8. Cancer can suck it… I hate that this is your reality… but I love your perspective and humor you bring to your blog… Ive been thinking about you – and sending you all the peace and healing in the world – you sure do deserve it… lots of love ❤️ Heather

    1. Heather, you’re the best! I appreciate all the peace, love, and healing you send my way. It means a lot to me.

  9. Dear Aaron…I know only too well the journey you are on. My beloved cousin Beverly was diagnosed with the same cancer.

    I am Jewish and do a Misheberach (prayer for the sick) daily. I would love to include your name on my list.

    I have your name and need your mother’s first name to complete the prayer.

    Stay Strong!

    A Canadian Friend….Cyndy

  10. Aaron, you come to my thoughts often. I saw you mention your mom. I loved your mom – she was such a dedicated mom as she would help with so many of the fundraising events we had at Operation Discovery. I’m praying for you and your family.

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