I am a hunter, and my prey is elusive.
I am wounded and slow; my prey is swift and seemingly inexhaustible.
I am fallibly, vulnerably, painfully human, and my prey is a shapeshifter.
Over the last five weeks, I have tried many, many times to sit down and write about this experience called recovery, and failed.
There are moments I think I almost have it in my grasp — that I almost have the words to throw over it like a snare, a net woven of meaning. In a wild flash of hope, I can almost taste the triumph of capture, and I think: if I can capture this experience, then maybe somehow, I can control it.
But suddenly the day shifts, the night turns, and some unpredictable-but-not-improbable event unravels in my body. The world slides out from under me again; the story changes.
The thing I thought I had within my reach wriggles out of my grasp like a slippery eel, grows wings and beats me back, shifting shape as it escapes, leaving me empty-handed and powerless.
Suddenly all the words I have are the wrong ones, my tools useless and ineffectual.
And suddenly I’m so very tired, because now all that’s left is to wait.
And chase. And wait. Again, and yet again.
I had hoped to write to you today with something concrete, and polished, like so many essays on Substack. Something full of gratitude and optimism, jaunty and energetic, that would show you how well I’m doing despite everything that’s happened. Something that reminds me of what I sound like, in the same way the selfies and stories I’ve been sharing on Instagram help me recognize myself, and remind me: hey look, I’m still me. Here’s proof.
But this came out. Maybe this is what I really want to say about my recovery.
In On Things, an excellent newsletter on curiosity, creativity and aliveness, Madeleine Dore shares a piece of writing advice from Walt Whitman.
“The secret of it all, is to write in the gush, the throb, the flood, of the moment—to put things down without deliberation—without worrying about their style—without waiting for a fit time or place.”
So here I am, writing from the gush. It might be a mess, but it is nothing but real.
I cannot write a story while I am still living it.
Perhaps the meaning-making is best left to later. Let’s just try the facts, shall we?
On June 10th, three months after my diagnosis with DCIS, a non-invasive type of early breast cancer, I underwent a lateral mastectomy and sentinel lymph node removal. After one night in the hospital, doped up on painkillers, I floated home in a bubble of calm. It might have been the morphine, but I’d like to attribute the peace to a sense of surrender — of giving myself over to the experience, allowing myself to be held by the people around me.
One week later, the plastic surgeon in charge of my post-op care and eventual reconstruction pronounced my nipple dead. Necrosis, it’s called, tissue death from lack of blood supply. It would have to be surgically removed to prevent infection. Into the operating room I went, under general anesthesia again, not knowing how much of it would be saved. I woke up, and it was gone.
In the midst of all this I received good news: the pathology results have come back. Part of the DCIS was found to have become invasive cancer. It would have spread, but it’s all gone now. We got everything. The margins are clear. You’re all clear.
This outcome should have been celebrated, for was this not the point of the whole exercise? Instead it was swallowed up in the grief of watching a part of me I love and adore die slowly, then disappear all at once.
Just the facts, ma’am, if you please.
Removing dead tissue wasn’t enough. Within days I had a raging infection that a knock-your-socks-off course of antibiotics couldn’t fix. One week later I was back in surgery under general anesthesia for the third time in as many weeks. Again, I had no way of knowing what would happen until I woke up.
My tissue expander— a temporary prosthetic designed to gradually stretch my skin and create a pocket for a new breast, had to come out—and my insides were far too infected to put a new one back in.
The plan for reconstruction, like all my plans, would have to change.
I love to say: time is a construct, but what it is now, is total mindfuckery.
In my head I’ve been in bed recovering for five weeks. But in my body, it’s only been two weeks since my last surgery. Different parts of me are healing at different rates. The closest I can compare it to is giving birth, only that different parts of the baby have come out at different times, which makes it rather complicated to measure its age in weeks.
I didn’t expect recovery to be linear, but I didn’t foresee multiple setbacks, either. Complications wear you down. Each one pushed me further and further into survival mode, where my lizard brain on high alert saw everything as a disaster waiting to happen. After three surgeries in three weeks, resilience reaches an all-time low. When you become a delicate medical situation, you don’t have a lot of tools to refuel the engine.
Now I’m climbing out of the wreckage — slowly, but (as I am told at my weekly checkups) surely. I am cautiously approaching the end of one solid week without a major surgery or trip to the emergency room. I can, and am encouraged to, go on a sunny holiday in August. Touchstones of normalcy are within my grasp, and I reach for them with gratitude and a growing sense of optimism.
My biggest challenges at the moment are keeping a rein on my impatience; regaining a sense of safety, trust that things are going to be okay; and rebuilding my resilience.
Some days patience is the biggest struggle, for while the whole world tells you to slow down, no one has the time to slow down with you.
Got any hacks for how to become more patient, like, now? Please send them. I’ll wait.
Thank you for piecing together the fragments with me. I hope you are having a much better start to the summer than I am, and it brings you all that you need: whether pleasure or adventure, patience or resilience, calm and healing, or a little bit of everything.
Here in Amsterdam, a characteristically unpredictable Dutch summer has lavished us with gloomy days of lashing wind and rained-out barbecues. I don’t mind — it’s good for cocooning and not feeling like I’m missing out on much. Deep in the mud and mess hide tiny sprouts of hope, stubbornly growing.
See you here again soon. With better news. I promise.