I typically don’t use cancer labels, such as “survivor” or “thriver,” but when I heard about COVID-19 “long-haulers,” the term resonated with me.
I am in the middle of my eighth year living with metastatic breast cancer.
When I was diagnosed, the average life expectancy for all breast cancer subtypes was three years. Today, the average life expectancy for my breast cancer subtype (ER-negative,HER2-positive) is 3.9 years. It’s an improvement, but fewer than four years isn’t a whole heck of a lot of time for anyone.
My doctor didn’t give me a prognosis that included a dead-by date (thank goodness) but I did investigate online and read as much as I could about my subtype and current research.
Because I’m a stubborn person — ask anyone — I set goals for myself. Some were pretty low-bar: Take a shower, walk around the block, answer the phone. But I also set long-term goals from the start. Most of these related to staying involved in my kids’ activities, exercise, and strengthening my abdomen so that I could climb out of a kayak without asking for help (even when you have stage 4 cancer, you have some remnants of pride).
But the unspoken goal had to do with reaching and living beyond that three-year average.
Of course, I could have done everything the same and not reached it. I know—and I hope others know—that we can’t control how our bodies respond to treatments. Some of us do exceptionally well and others do not.
Once I reached year four, I started looking into research about so-called “exceptional responders.” By year five, I began to think of myself as a potential exceptional responder, if only because I needed a way to describe my experience that focused on science rather than plain luck.
At eight years, I’m comfortable calling myself an exceptional responder. There are various definitions, though I happen to find the definitions in Table 1 of this research articlevery clear even if they don’t exactly fit my care for HER2-positive metastatic breast cancer. I have been on only one line of treatment this entire time, well past the 72-month timeframe for people with my subtype.
Still, “exceptional responder” rings a little false even if it’s scientifically correct. I’ve had an exceptional response to my treatment, but I am still receiving treatment. These days I’ve taken to borrowing from COVID-19 terminology for what I am actually living: The long-haul.
I’ve always resisted most cancer labels —I don’t call myself a survivor or a thriver or a lifer—but there is something about “long-hauler” that resonates with me. Eight years of IV treatment every three weeks, with all its cancer-related care including regular scans, doctor appointments, blood thinners, heart monitoring, acupuncture and so on is nothing if not a very, very long haul.
Saying I’ve had an exceptional response to my treatment captures the truth, but it doesn’t really capture my reality. “Long-haul” tells the story that this is an ongoing situation, that things may and probably will change over time, so I need to be living now but also looking to the future. The choices I make today can affect what is available to me tomorrow, how much time I have, and my quality of life.
Long-haul implies the struggle is never-ending and that is what cancer has become for me.
I wonder who came up with “COVID long-hauler” and if they knew how quickly it would catch on. You’d think that this term would have snuck into the cancer vernacular long ago, but I don’t remember every hearing it before COVID.
I wonder if it is used in early-stage groups to describe their experience of lingering side treatment side effects.
And I wonder if scientists think about us in this alternative way. Not as subjects who have responded exceptionally to medical treatment, but as people who get up every day and keep moving, sometimes slowly, sometimes sideways. In it for the long haul.
For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.