Buses and Uncertainty

My mom is amazed by how many people watched the track meet held across from her house. My daughter is talking about her adventures with the ski team, while my husband quizzes her about the classes she's taking. My brother proudly talks about his grandchildren showing pictures of their recent accomplishments. My sister-in-law chats about the upcoming move of a friend's daughter. I expound about the virtues of a museum that I recently visited. Just a normal family dinner celebrating several birthdays.

The table is loaded with food and the conversation is freewheeling with lots of laughter. Suddenly I remember that I have metastatic breast cancer. I'm feeling generally good with few side effects from my current treatment that hopefully will keep the rogue cells in my bones. At times like this, I can forget that I have metastatic breast cancer which will most likely cause my death. When that will happen is unknowable, and uncertainty is now a constant part of my life. Of course, all of us face uncertainty.

As the saying goes, anybody can walk out the door, get hit by a bus and be dead in seconds. However, as someone with a metastatic disease said, "The only thing I can think of is that I'm going to die. And that's the one certainty that I have, and I know people say (…) you could cross a street and be run over by a bus. But you live your life not thinking about it. I have to deal with it. My bus is here. All the time”. And my bus is outside the door every morning and uncertainty is always with me.

For me, uncertainty manifests itself in several ways. There is a lot of ambiguity about my breast cancer which is "atypical" starting out as hormone positive but is now probably triple negative. It is not as aggressive as I was initially diagnosed with breast cancer 10 years ago. That makes the future unpredictable since most studies don't capture the outcomes for someone like me who is a healthy 60-year-old with an atypical cancer. While metastatic breast cancer is unfamiliar to me, my family has experienced a rare form of ataxia that has resulted in the death of several siblings— for most of my adult life I've wondered whether I'd get it. Returning to the bus metaphor, while I was thinking Bus #9 (the ataxia bus) would hit me, it turned out to be Bus #3 (the breast cancer bus) resulting in a new and different uncertainty.

The feeling of uncertainty waxes and wanes and is stressful, fatiguing, intrusive, unending and isolating. Ultimately, uncertainty in metastatic breast cancer is not something you get past. It's always there— waiting for the results of tests, figuring out the best treatment, wondering about prognosis and feeling anxious about costs of care. However, paradoxically, uncertainty leaves the door open for hope. Persons with metastatic breast cancer live in two worlds— that of uncertainty and that of hope. My future is not written in stone because there is no way of knowing if I will live 2 years or 15 years. Consequently, that leaves space for envisioning the future, e.g., hope for time with my family, hope for being able to accomplish some things, and hope for new treatments.

Simultaneously living with uncertainty while embracing hope is not easy but it can be done. Arthur Brooks explores career transitions in the Atlantic magazine in an article entitled "Your professional decline is coming (much) sooner than you think: Here's how to make the most of it". While not about living with metastatic breast cancer, it a useful framework for living with uncertainty.

He promotes four different strategies for living well. First, jump which means focusing on what is most important in our personal and professional lives and walking away what isn't important. For me that meant stepping out of my administrative roles at work and downsizing to a much smaller and more manageable house and yard. Second, we should find ways to serve and help others. For me, I have renewed my volunteer work for a nonprofit clinic in my community, which provides me much satisfaction. Third, worship by exploring our own spiritual self and I've found great joy in reading, thinking and exploring new realms of spirituality. Finally, Brooks advocates that we connect dedicating time to meaningful and purposeful relationships.

Connecting and reconnecting with others who are comfortable with metastatic breast cancer has been extremely beneficial to me. Ultimately, the bus doesn't leave my street, but it doesn't have to impact my daily life which can be filled with hope, meaningful activities, and relationships despite the uncertainty.