The first letters · Kindling

Angeline · daughter · her mother, glioblastoma · almost a year out

To the daughter who's suddenly faced with carrying your mom through a storm. I'm almost a year out from her passing.

My mom and I were best of friends. I was 15 weeks pregnant and also had a toddler. She suddenly became ill and was diagnosed with Glioblastoma. Life was already so busy and so full, and now I felt like I was becoming her mom too.

I look back and realize how hard that all was, and how life felt surreal for so long. If you're in the thick of it now, I'm here to recognize that this is brutal, it's enormous, and it's exhausting. For you, for her, for everyone around you.

You're already sick with worry, anticipatory grief starts consuming you, and if you're pregnant, an added layer that is impossible to describe.

Being on this side of it now, I have learned that there's no way out, but there is a way through. The physical and emotional toll can push you to limits you didn't know you had, and it will also force you to view life differently forever.

Throughout this experience I realized how much of a privilege it was to care for her through this, especially as I was creating new life. In a crazy way, I felt the most love and warmth from her and everyone around us I'd ever felt. My baby got to feel that too.

The gratitude for even having the relationship I had with her came to the forefront, and I'm so proud of being there to shepherd her through the cancer and the end of her life.

I encourage you to take care of yourself when you can, whatever that looks like, and try to lean into love, honor, and time with your person. If you're a caregiver for her, she is the luckiest, you are the luckiest, and despite the heartbreak, it can be a beautiful thing.

Erika B · living with glioblastoma · in treatment

I heard this today in my advanced cancer group. We're a bunch of misfits with various stage 4 cancers, and I'm the lone grade 4 GBMer.

We were talking about being stretched beyond what we thought we could handle, so far past our pre-cancer selves. And our fearless leader likened it to taffy.

So I wanted to remind you: you're like taffy. :)

Jason B · caring for a spouse · glioblastoma · in treatment

It was so hard to see the kids have to "grow up" at a pace we never intended. There was too much to do and no family support, so they had to do things we would have done.

We had to rely so much on strangers, and it felt so vulnerable, like someone could take advantage.

But our son told me he thought maturing this way was helpful to his story. That gave me peace when the rest of my world was chaos and out of control.

Linda · caring for her husband · glioblastoma · in treatment

To the one who's just become someone's harbor,

He used to be mine. For thirty years, when I needed steadying, he was there. Then he was diagnosed with glioblastoma, and without either of us choosing it, the roles reversed.

I started driving him to appointments. Picking up his meds. Making sure he ate well. And one day I realized: I had become his harbor.

The harbor doesn't leave. It receives and holds and releases and receives again. Its constancy is its whole purpose, and its whole burden.

People forget to ask how the harbor is doing.

If you are the harbor in your family right now, I see you. The one holding back tears to be strong. The one who keeps driving even when you want to pull over. You are allowed to be tired. You are allowed to feel two things at once.

Some days I want to return to being the boat instead, the one that gets to leave, feel the current, be held instead of holding. We live scan to scan, and the waiting never gets easier. You'd think it would. It doesn't.

He was my harbor once. Now I'm his. That's not a loss, it's love, taking a different shape.

Some moments you just hold. And some moments you go.

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