The Long Staircase of My Colorectal Cancer Journey

I’m 4 1/2 years into a stage 4 colorectal cancer journey. That’s an eternity compared to those who’ve passed tragically quickly from late-stage or aggressive cancers. And it’s in the blink of an eye compared to those living with recurrent disease for a decade or more. All of us who land in this space, though, experience an unavoidable rollercoaster of emotions.

During a particularly hard time a few years ago, my rockstar therapist told me something that sincerely changed my outlook on life with cancer (and even life in general). I was struggling with a scan that showed some unwanted disease progression. I told her it felt — as it had a few times before — like it was “the beginning of the end.” Like I was handed a fast pass to my own funeral. That it was time to get my affairs in order.

She pulled an analogy from her oncology therapy trick bag (I so appreciate the goldmine that is a good oncology- or chronic illness-trained therapist). She said it sounded like I felt as if I was standing on the edge of a cliff. And with the next step, I’d plummet to the ground. The end. The finish. The finale. I agreed. Yes! That’s exactly how it felt.

She then explained that maybe there’s a more accurate way to think about this scan result. She said cancer journeys are usually more like walking a set of stairs (an M.C. Escher stairway, in my head). We get a disappointing scan result. Take a few steps down. Start a new treatment that shrinks some tumors. Take a few steps up. A tumor shows up in a new location. A few steps down. A trial opens up that matches our cancer type and stage. A few steps up. And so on.

That stairwell image has stuck with me and brought me some calm each time I have a disappointing result or a scary conversation about future issues. I don’t worry that the next bad scan will be a freefall to the end, but instead, a manageable step or two down that staircase. I can limit my “worry window” to just that next step or two.

And I try to keep in mind that it’s most likely that there will be steps up, too. I’m likely to benefit at some point from the explosion of discovery and learning happening around immunotherapies, targeted therapies, and other novel treatments developed as brilliant scientists untangle the complexities of human and cancer genomics.

I’m a week away from my 70th chemotherapy treatment. I’ve had several major surgeries and a full course of radiation that’s left me permanently scarred. Life with chronic cancer has been hard. In early 2022, I developed brain tumors from colorectal cancer that were so big when were discovered. It would cause me to get dizzy just by standing and have visual blind spots. It was definitely a “standing at the top of a precipice” moment. I cried with my husband and kids when we found out it was brain tumors. We were pretty sure this was a “beginning of the end” moment.

But two weeks later I’d had a surprisingly easy surgery, and my oncologist casually mentioned that “what happens in the brain kind of stays in the brain.” Now two years later, I’ve graduated to brain scans just every six months, as nothing has yet popped back up in my brain. In the rear-view mirror, even that brain metastasis news was just a few steps down. It’s amazing that now if brain metastasis did show up again, I could see them for what they are — just another couple of stairs to tread.

And I try to recognize not just the steps up when they do happen (an oncologist recently told me I had “lazy cancer.” I’ll take it!), but also to remember to look up from the staircase at the beautiful, miraculous view we cancer survivors are uniquely privileged to see. The view that includes a caring side of people you’d rarely get to experience in “normal life.” It includes an amazingly talented network of professionals who’ve given up lots of their own lives to help us patients live longer and better. It includes a peer group of cancer veterans who can see you in your struggles and hold your hand in hard times and be there for high-five in good ones.

The chronic cancer staircase can be hard. Trying. Tiring. Hopefully long. But whatever it is, let’s try to enjoy the views along the way.

This post was written and submitted by Karen Kosky. The article reflects the views of Kosky and not of CURE®. This is also not supposed to be intended as medical advice.

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