December 10, 2025

Journal entry (aka personal essay on long term brain cancer survivorship) 

Oh dear God, living with glioblastoma means bullets are ricocheting my way…again (1). Sophie Kinsella has died. She’s gone. The icon of my twenties whose light hearted novels surely shaped my own novel…Three years with glioblastoma and she’s …gone. 

I read the news of Sophie Kinsella’s passing on my phone while I stand in the kitchen, apron-clad, making my grandmother’s molasses loaf. Despite my exhaustion I try to remember and connect with my grandma (who passed away 30 years ago) as I bake. As Holiday tunes play in the background. And Sophia’s…gone. 

Like a scab that’s been picked my brain-cancer-wound begins to ooze. Last week reorganizing old papers I stumbled on my “bad” IDH status. After a conversation with my oncologist years ago I’d chosen not to receive my tumor’s genetic marker status. When I’d asked for my tumor marker status he’d calmly suggested I be absolutely sure I wanted to know. Perhaps you would like to trust that I will share any clinically pertinent results with you. You can’t unknow what you hear. But it is safe here in your file. I trusted my oncologist. “Nope. You know what, I don’t actually want to know.” I’d replied. Now I knew alongside the pre-Christmas exhaustion and my middle age vision that has been tricky to sort and all too reminiscent of figuring out my eye prescription the acute days following my glioblastoma diagnosis.

It’s collectively too much as Adam Hayden my GBM “twin” (2) is dying.

I hold on to hope. As protest.

Just this morning I’d envisioned being at my daughter’s wedding – hope that I will prevail in the end – because the brutal facts of my reality are smack in my face. (3)  

Oh Merry Christmas – let the pots soak and the children’s gifts be what they may. Let me hold it all tightly and loosely and christen this season with whimsical delight. (4) Delight that makes the darkness bearable. Ordinary, simple, beautiful delight. Feel the paint (5), create. Oh God, there’s gonna have to be a thousand separate heavens for all my flying parts– (6) And yet, PS. I hold on to hope. As protest. (7)

It is here, at this point in my journal entry that I realize I haven’t written an Advent Letter for a couple of years – but I think this is one. I know this is it. And I let Mother Mary, Lady of Sorrows (who I’ve learned about this advent) hold my sorrow.

And then

And then, December 20 Adam dies. I gasp when I read the news on Instagram. It’s not a surprise, really. But it startles me nonetheless. And right before Christmas. Deep sigh. Saddened and sobered I write of his passing on my Instagram. The sadness and sobriety persist. Christmas joy doesn’t take it away. It’s not meant to. Instead it all co-exists. And I am grateful for sadness – not terror like years ago shortly after my glioblastoma diagnosis when I’d connected with a young man my age with astrocytoma. Grade 3. Not yet glioblastoma (8) And he died. And my insides had roiled. I was petrified. His tumor had been grade 3, mine: grade 4. I was done for.

But I wasn’t.

And here I am. Alive. Holding onto hope. As protest.

The Tattooist of Auschwitz

Over the Christmas holidays I read The Tattooist of Auschwitz. I “love” Auschwitz stories. Because they are timeless tales of how to prevail despite-. To rise above circumstance. To transcend in order to keep going. In The Tattooist Lale, the main character and tattooist, says “choosing to live is an act of defiance”.  While the holocaust was a gross and grotesque inhumane human creation of circumstance, I find so much to be learned from stories of it. Like Lale’s rebellion to stay alive. To live despite. Living with glioblastoma, I relate.

I’m not much a of New Year’s resolutioner, so this is not a resolution. But it is a pertinent reminder. A rebellion. To hold on to hope, as protest. To believe I will prevail, despite.  

xo
Cheryl

 

Notes:

  1. This is a term I use in my current memoir draft to describe fall 2017 when a young man my age whom I’d conversed with, died from Grade 3 astrocytoma.( A Grade 4 astrocytoma is considered Glioblastoma.) And then my husband, Ryan, and I travelled to Las Vegas the day after the shooting and I was very rattled.
  2. I encountered Adam Hayden and his blog Glioblastology ( https://glioblastology.substack.com/ ) on Instagram a few years ago. I was taken by Adam’s incredibly witty writing and the fact that his story is so much like mine: pretty much the same age at diagnosis, same number of kids with similar ages to mine, he was diagnosed six months before me. 
  3. My favorite quote is the Stockdale Paradox by 7 year Vietnam POW: “You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be.” As cited by Jim Collins in Good to Great
  4. Sara Blakely (creator of spanx) reposted (Dec 1, 2025) @thespiritualbeing post on Instagram . Here is an excerpt: “One of the healthiest things a woman can do for her mental health is protect her whimsy. not her productivity…her whimsy. the soft belief that life can still surprise her…protect your whimsy. water your delusion. keep the sparkle, the romance, the childlike wonder. it’s not denial, it’s resistance…staying hopeful is its own quiet rebellion”    
  5. “Feel the paint” is what an art therapist said to my daughter and I when she invited us into her home studio shortly after my glioblastoma diagnosis. 
  6. Andrea Gibson from their collection, Take Me With You 
  7. “take hold of hope. as protest” from Kate Bowler’s Advent Blessing that I used while facilitating an Advent session. https://katebowler.com/blessings/a-blessing-for-the-advent-of-hope/
  8. Astrocytoma Grade 4 is considered Glioblastoma
  9. Photo was taken by myself in Alberta this holiday season.