Rebecca’s Reflections from the Glioblastoma Summit (And how she finally looked the scary thing in the eye)

Last weekend, I did something I never thought I’d voluntarily sign up for: I was invited to speak at a conference about brain cancer, and I actually went. 

I spent two days in a room full of people living with, supporting people with, and treating glioblastoma– the deadliest form of brain cancer, and the same disease my mom was diagnosed with when I was 5 and she was 45. The same disease that ultimately killed her after eight, slow, debilitating years. 

I knew the weekend was going to be hard. I knew there would be moments I felt overwhelmed and needed to pause and take a breath of fresh air. There were plenty. For example, I had to walk out of the welcome reception and go lie down because I felt like the wind was knocked out of me seeing current patients using walkers, just like my mom did. It took me back to a deep place of fear, being an elementary school caregiver for a mom who couldn’t move without support.

But I hoped that the weekend might help me feel just a little bit safer in my grief. And it did.

Here’s the thing: glioblastoma has always been the scary monster in my grief story. As a kid, I never grasped what it was. I didn’t fully understand that my mom was going to die before she actually died. I just knew she was sick, perpetually. 

But she did die, when I was 13.

For most of my life after that, I treated mom’s illness and death like someone I said bye to already at the grocery store and was awkwardly avoiding in the cereal aisle. I’d dip my toe in every now and then to glioblastoma-related conversations, the occasional podcast episode, the occasional event, but they often left me feeling overwhelmed afterward.

Recently, though? I decided to dive headfirst into exploring my grief for my mom and the disease that killed her. Because, apparently, I am a masochist. But mostly because I wanted to feel better. I didn’t want that particular part of my grief to feel so overwhelming.  

I’m so proud of the work I’ve launched through the Feinglos Fund at Duke’s Preston Robert Tisch Brain Tumor Center, that will bring grief support into clinical settings there. Through conversations about that, I’ve become more interested in learning more about the scientific side of what actually killed my mom. I’ve been starting to feel less afraid of talking about it, and understanding it. 

Last weekend’s summit fully shifted that for me. 

I talked to actual human beings who are living with glioblastoma right now. I told them how grateful I was to speak with them, person to person. 

I listened to caregivers who sounded like the adults my dad became by default.

I heard about new treatments that are being met with cautious hope.

Now, the disease wasn’t this faceless monster anymore.

It didn’t get less serious. But it did get less terrifying.

Before a few months ago, and especially before this past weekend, I never really understood glioblastoma as an adult. I certainly didn’t have the language or context for any of this when I was a kid watching my mom decline.

But I’m a grown-ass woman now. I get to learn what I couldn’t absorb back then. I get to face it without being thrown completely into panic mode. I know I’m safe, now. I can learn about things that are hard and know I am ok.

So now I’m feeling…better. Not “healed” because I’m just not into saying I’m healing from my grief. But after this summit, glioblastoma feels less to me like a horror movie I have to close my eyes for, and more like a drama I can watch, cry through, and be curious about. 

Oh, and one more thing: creating space for honest conversations about grief doesn’t just help other people, I’ve learned. It boomerangs back to help you help yourself.

Yes, I was invited to give a talk on grief at a summit on brain cancer. This was incredibly meaningful work for me, and I was eager to support the people in the room. 

But, I left the summit realizing how much I’d been supported by the hugs, the conversation, and the community I’d experienced. 

Something in me settled.

Sometimes the thing that’s been haunting you becomes a lot less scary once you finally look straight at it.