Hello community,

I’m Okay!

It’s been a long time. I’ve had people reach out since it’s been so long since I’ve posted anything, and ask if I’m doing okay and that you’re thinking of me. Thank you. And yes I’m doing well. (I had a clear MRI scan at the end of August!) It was just very busy living life with my family this summer so I was offline. How great is that ?!  We enjoyed a nearly month long road trip to Oregon, Yellowstone, the Saskatchewan prairies, then up to our beloved family camp in Northern Saskatchewan. There we saw so much scenery, so many people, and there were so many others we weren’t able to see who were in our thoughts.

Now fall. Anyone else love fall as much as me? (I’d LOVE to hear your favorite fall things in the comments!) This year however fall has come with a bang. My eldest transitioned to middle school and french immersion, our calendar of kids activities is jam packed. And I found out that my mom’s multiple myeloma (blood cancer) is no longer in remission and that she has a “hole” in her femur.

While my mom is presently doing really well with no symptoms (the cancer was discovered through Blood work surveillance for cancer markers and a subsequent x-ray because those numbers were creeping too high) her cancer’s return brought big emotions for me. I feel so far away. I want to be there when she has radiation so she’s not alone, two hours from home. I should be there!

I have learned that I have an inner tug to be everything for everyone. I struggle to realize that I cannot be and moreso I cannot split myself in two to both be with my kids and husband and the same time with my mom.

Surrender

I’ve been practicing surrender lately, and I thought I had released the tension surrounding my mom’s health to the universe, but my body told me otherwise: I got hives that had no explanation other than stress. And then a bad cold. Deep breath. This. Is. Hard. I guess I should know by now that life is hard, each day I sit at my desk and work on my memoir, I write about the difficulty of brain cancer and having young kids aka the impossibility of life. And yet I forget. Life. Is. Hard. “Life’s meant to be hard” we tell our kids, “that’s how we grow and learn”. Yet always we wish there was a different way.

Yesterday, I read a blogpost by Adam Hayden, a fellow long-term glioblastoma survivor, on his blog Glioblastology (1). He spoke about how being a long-term glioblastoma survivor is lonely. There’s so few of us. 95% of other glioblastoma survivors are either acutely fighting for their lives or they are in the dying days of saying goodbye. Because of that, us long-term survivors engaged in the glioblastoma and brain cancer community are in what Hayden calls “a steady state of loss”.

 

The Steady State of Loss

I’ve always thought end of life is beautiful, I’ve recently delved into reading more about it. Books like The Lost Art of Dying, 4000 weeks, The Beginner’s Guide to the End and The Top Five Regrets of the Dying have been my favorites. Of course this topic is ever more intriguing to me since I shook hands with death 7 years ago when I was diagnosed with brain cancer and was given a 1 year prognosis. In fact I think about death a lot. And I think about how odd our culture is that it does not. Death is ubiquitous. We will all die and we will all lose people we love. Death is a part of life that I want to enter with grace. Likewise, I want to enter others’ deaths with grace.

And so as I sit here on a gorgeous September morning, by the river, the sun shining on my face, the crisp breeze rustling, the water glistening, I’m at ease. And I know that during the “steady state of loss” there are no right phrases, no best mantras to ease the difficulty. There’s only things like inspiration, nature, beauty, gratitude, loving presence, imagination and basking in the rise and fall of the sun for countless days to soothe the broken and breaking heart. Until somehow, someway you realize that your “heart that broke so long” (2) will break no more and you are rising strong (3).

Not only on your own two feet, but on more. Bolstered by some intangible force. This is how all can be well,- even when wellness is out of reach. This is how light penetrates the dark days. This is the very magic of being human.

I don’t usually share my poetry, but this poem I wrote a month ago keeps feeling like it needs to be shared. It is my gift to you today.

“This heart that broke so long”
Will break no more.
I am rising strong.

I am a seer.
The transcendence where death
cannot touch me is not
immortality-

It is surrender cloaked in 
acceptance and grace
Empowered with agency.

Here seas are parted
And I walk through the 
Waters of grief on dry land:

Set Free.
Oh I have been set free.

By Cheryl Rostek

Thank you for journeying with me. May your journey be filled with hope, inspiration, and a sense of agency. whatever stage you’re in.

xo
Cheryl

Notes

  1. Adam Hayden. https://glioblastology.substack.com/p/the-brain-tumor-hot-take-that-nobody
  2. “This heart that broke so long” is the starting line of an Emily Dickinson poem
  3. Rising Strong is the title of a wonderful book by Brene Brown and the concept is that we can only be unafraid of falling when we know how to subsequently rise strong.