A patient with metastatic cancer writes about how the unknowns of her disease have shaped her life and health experiences, and how she has learned to live with that uncertainty.
Did you know that there’s a theory of uncertainty for those living with chronic health issues? I didn’t know that until I looked at the references in recent research when I was reading about better quality of life for people living with metastatic cancer.
From the moment of my diagnosis with metastatic breast cancer, uncertainty has been a given. Yes, it was called a terminal diagnosis but when? How? Would I recognize the signs? In the early days, people would try to find common ground with me by saying that the only certainties are death and taxes. Word of wisdom to those looking for the right things to say: That sentiment is not it. I also remember the intensity of my uncertainty as it began to dawn on me that I might be someone who not only reached the 36-month average life-after-diagnosis of metastatic breast cancer but lived beyond it.
I’m now well into my seventh year of life with breast cancer that had spread to my lungs at diagnosis. I can’t point to anything special about me to explain my treatment results. I am exceptionally lucky within an unlucky bunch of people to have a cancer that, so far, has responded well to treatment.
Go back to my last sentence. See that “so far?”
That sort of disclaimer is in everything I write, say, and even think about cancer. I’ve never asked my friends what they think as I sneak in a “so far” whenever they ask me something about my life with cancer. I hope they know it’s not a pessimistic take on what my future holds. “So far” is an acknowledgement that I am still living in what could again be a very bad place. It means I know what could happen but that right now it is not happening. Or, if it is happening, that so far it isn’t as bad as it might get, and it could get better or maybe stay the same. That’s uncertainty.
I don’t know what the next scan, or echo, or blood test might bring. I don’t know if I will continue to tolerate Herceptin (trastuzumab) and if my cancer cells will continue to be controlled by it. I don’t know what will happen with my friends who have metastatic or other incurable cancer, if or when they will run out of treatment options, if they will decide hospice offers a better life even if it’s shorter. I don’t know if that “watch and wait” uttered by a doctor means she thinks there’s nothing to worry about or if it really means there’s no hope.
It turns out that in the theory of uncertainty and chronic disease — the theory uses the word “chronic” because it means not acute — there’s also the idea of managing uncertainty. Over the years, I’ve tried, kept, or discarded countless methods of managing the unknowns of living with cancer and cancer treatments. Practically speaking, that’s meant gathering information, becoming knowledgeable about the illness I live with and how it is in my specific body, learning to be open with my doctors about what I know and need while respecting their knowledge and skill even when they can’t possibly know everything, seeking out support from people and organizations. These are all methods that research backs up as useful.
The goal can’t be to eliminate uncertainty since that’s impossible in cancer and in life, but it can be to learn to live with it in a way that leaves space for whatever future presents itself. That’s my theory of uncertainty, anyway.
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