Behind the Curtain:One Row

Hello my friend,

Last week it hit me that this is my routine now. The band around my wrist and the question I can answer before they finish asking it.

‘What’s your name and birthday? How is your appetite ? Have you had a fever, cough or mouth sores ?..”Different nurse but the rhythm is the same. It comes out like a rap verse I already know, the kind people lean in for when someone hits every word from Eminem's "Lose Yourself" at Karaoke without missing a beat.

I posted a photo of it to my Instagram Stories and wrote,

“Feels like Groundhog Day” 

Comments about my outfits on my Infusion OOTD make me smile. Some have said I need to have a fashion account. My younger self, that owned a vintage resale shop in my garage, squealed.

What I didn’t expect was a message that came in almost immediately:

“I was diagnosed on Groundhog Day in 2017… Two failed treatments and 20 rounds of chemo later, I’m 8 years in remission. Miracles happen. Even on Groundhog Days. You’ve got this.”

It wasn’t hope that caught me. I’ve learned to not attach myself to other peoples outcomes. In the cancer community you are told, over and over, that no two diagnoses are the same. I've learned to be careful with hope when it comes from someone else's story. What I felt was the bridge of connection. The kind that doesn’t fix anything but settles something inside you and reminds you that you’re not the only one sitting in it. The familiar feeling I get when I finish a painting, when layers I didn’t plan somehow come together and resolve themselves into something that makes sense.

It pinged a recent memory. I had listened to a podcast where Ethan Hawke mentioned, in passing, about a line from The Dude and the Zen Master., the old song, “Row, row, row your boat, gently down the stream, merrily, life is but a dream.” It’s a simple child’s song we all know and grew up singing it. A song so familiar it almost disappears, like something stitched into childhood, remembered without ever being revisited.

Row your boat.

I started to picture it, like the Lady of Shalott in a small wooden boat, the current already moving beneath her. Whether I do anything or not, the river keeps going. It doesn’t stop when I panic or speed up when I try to plan my way through it. It just moves. And that’s the point. My job isn’t to control it or predict it. Just to stay in the boat. To row once, gently, on the days I feel like I’ve lost it.

To keep my hands on the damn paddle.

Because that’s where I was.

I had just found out I didn’t qualify for a clinical trial I had been waiting on for three months. I didn’t have the mutation they were looking for. I know it wasn’t personal. I mean I didn’t apply to an Ivy League school but, it still felt like a door I needed, and it closed.

I didn’t say much about it at first. I mentioned it to my husband and then moved on. It was there and I couldn’t avoid it. It felt like I am standing in front of something that is supposed to open and instead I was left staring at the frame.

We’re looking into other options now. For the moment, those options are intensive  chemotherapy protocols, and I know what they ask of you. My disease starts in the negative, which means there’s only so much we can do.

I ended up sharing a small piece of that in my stories. I wasn’t being dramatic, it was just enough to acknowledge it, but then…my inbox started filling up.

Message after message. People telling me about their losses, their fears, the ways they are showing kindness for someone they love. Not performative or transactional. I read them more than once and not out of obligation, but because I needed to.

If I’m being honest I had been pulling back. Not out loss because I didn’t have anything to say, but because even saying it felt like too much. On a good day I’m sitting at a level five pain with low grade nausea.  It’s always humming in the background. Not loud enough to explain and not quiet enough to ignore. That’s not something people really want to hear, and it’s not something I want to repeat out loud. Trust me, I get tired of myself.

The world already feels heavy and I didn’t want to add to it. 

Once again you showed me  as I read through those messages that sharing my pain and sadness doesn’t add weight, it distributes it. It doesn’t make anything disappear, but it changes how it’s carried. It makes it feel possible, together.

One message in particular has stayed with me:

“Your journey resonates with me even more since my daughter was diagnosed with metastatic breast cancer in January. You have helped more people than you will ever know. I am a better advocate for her in her journey because of things I've learned from you. Words can never express how much I appreciate what I've learned from your cancer journey but I enjoy your talent, your artistic eye, humor and beauty.

Your husband has set the bar for what my granddaughter wants in a partner. ( You are touching generations). You are definitely so much more than your dx and so is my daughter. Thank you.”

I had to catch my breath. That one stopped me.

It reminded me that even when I question everything, when I want answers instead of understanding, when I’m praying for the day something might finally be called unremarkable, what I’m sharing is part of something larger for me. It’s become my creative offering.

So for that, thank you for being here with me. I needed you to know…..

I’ll keep rowing.

One row.

xo,

PS. What are you carrying right now? Have you said it out loud?

I loved all the responses from my last Newsletter and I am still replying.