Living Longer in the In-Between of Advanced Cancer

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Here’s a new term for me: Response shift.

cartoon drawing of cancer survivor and blogger, Martha Carlson

I learned about it while reading a research review article about the effects of living long-term with advanced cancer.

It’s nice to have an official term for something I do as I strive to live better with metastatic breast cancer. When I was first diagnosed and googling all the statistics — and growing increasingly overwhelmed — the median prognosis was 36 months. There has been some change, but not enough in the years since my desperate online searches. Living long-term with advanced disease is still not the norm in breast cancer.

Yet for some of us — the oligometastatic, the exceptional responders, the ones who are lucky — there’s the reality of living long, or at least longer, with this disease. There isn’t a lot of knowledge about this experience because it’s so new for many advanced cancers.

Not to put too fine of a point on it, but where there used to be only cured or dead, there is now the space where many of us live, some for a few extra years and some for decades. When I look backwards over my life with cancer, I can see that I started living in this strange in-between as far back as 2018, when the 36-month alarm stopped going off and I continued to wake up each morning.

I’ve been in this uncertain space between cure and death for years now.

How I live, even at the inevitable low points, requires conscious decision-making. For me, deciding to reframe how I look at setbacks and struggles with cancer has been key to waking up with hope (if not a smile). There hasn’t been a point where a scan is “just a scan” or treatment doesn’t bring fatigue and more. For me, it’s not so much a balancing act as a continual reassessment of the big and small pictures of my life.

Even before I read the definition of “response shift,” the term resonated. I’ve been here, reliably turning up for treatment every three weeks and following up on all the test orders, shifting my perspective on it all with each new day. So, when I read that there’s a psychological process known as response shift, I wanted to know more. The research I linked to in the first paragraph says, response shift “delineates people’s adjustment in terms of expectations and/or goals in order to accommodate their changed circumstances, which is necessary for maintaining a good quality of life…Response-shift was observed as repetitively readapting by finding or searching for a (new) meaning in life, and reconsidering life decisions or future plans.”

Redefining. Readapting. Reconsidering. It’s been impossible for me to do this without intention, effort, and honesty with myself. Sometimes, I feel better within moments of a conscious decision shifting my response. More often it happens over time but either way it has helped me to find a way to lighten the darkness of this disease.

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