A friend of mine has recently been introduced to a staple of the metastatic breast cancer world: uncertainty. Although she doesn't have cancer, her medical team is stymied by a change in her health, and all she can do is wait and see.
Living in a world of "wait and see" is hard. With cancer, and especially with metastatic cancer, uncertainty invades and demands a response. It impacts decisions about health, yes, but also about family, vacations, spending. Name a topic and I can guarantee that metastatic breast cancer enters into the mix of variables guiding me to the best possible decisions.
Most people I know don't live with my constant level of uncertainty – we have homes, adequate food, health care of some kind, loving friends or family. When you are pushed into the world in which I live every day, even if it's for just a short visit, it is scary. Here's how to cope:
Get all the information. My own husband urged me to stay off the internet in the early days of my diagnosis, and for some people that's the right advice. For others, like me, it just serves to increase anxiety. I took to heart his admonition that "By the time something is on the web, it is out of date" and let it reassure me that even if what I learned was bad, it wasn't the last word. There's a lot of information out there and it's easy to become overwhelmed. Yet, I felt reassured by my new knowledge. I understood immediately the importance, for me, of having background information that would help me make – and accept – the choices I was going to face.
Know your own facts. If the web and other resources help me with the uncertainty of my general diagnosis, keeping on top of my own personal data helps me face the specifics. I like to know what is going on with my care and I read my patient portal whenever something new is posted. I want to have a copy of the visit notes my oncologist makes after I see her (I request these). I pay attention to what the radiologist writes about scans. Sometimes the information is hard to take, sometimes it makes me realize I need to make better choices, but it always provides a chance for me to understand more clearly, which is a surefire way to reduce the uncertainty that can overwhelm me when I feel I've been kept in the dark about some aspect of my care.
It’s not “either/or” Despite what it feels like, most of us are not either living with total uncertainty or completely without it. Every day, everyone experiences (and survives) something that fuels feelings of uncertainty. While my baseline is much higher than that of my friends, I keep in mind that I've been here before. I've faced three and a half years of scans, blood tests, countless appointments and conversations, and while it is stressful to live this way, I know I can do it because I already have.
Turn off fight or flight mode. Uncertainty leads to anxiety leads to fight-or-flight response. My heart rate increases, my breathing changes, my arms tingle. There are proven ways of reducing its powerful physiological effects, including meditation/mindfulness, movement (such as yoga) and therapy. If I am feeling the very real response of fight-or-flight, which can turn into a loop that increases feelings of anxiety, I pay attention right away. My first step is to close my eyes and breathe deeply, I listen to what is around me and then use meditation techniques I learned as a kid, followed by simple arm movements from qi gong that provide, to me, a sense of peacefulness
Don’t stop living. I've been frozen by uncertainty, unable to do even the least consequential activity because I was stuck in place with the anxiety and fear that are my hallmarks of living with metastatic breast cancer. I know to expect the feelings of regret for making plans for months from now – it’d be so much easier to stay home – as the dates approach, but I also know that what I actually feel is fear. Fear that cancer will get in the way, but also fear of going outside the small world that metastatic cancer sometimes seems to have shaped for me, a world where uncertainty thrives. So, I mostly say yes to what I can and I make a point of being an active part of my loved ones' lives.