Know Stage IV: How Long Do I Have? Committing to Change and Embracing Life Goals While Facing Profound Uncertainty
For LBBC’s Know Stage IV campaign, on Sept. 18, members of LBBC’s 2017 class of Hear My Voice Outreach Volunteers have written about what they want other to know about metastatic breast cancer. Learn more about Know Stage IV.
For Know Stage IV, Valerie Roybal writes about making the most of the time she has, including embracing her inner artist.
I was first diagnosed in early 2011 with stage IIB invasive lobular carcinoma. After completing the standard gamut of treatment, I was re-diagnosed the following year with stage IV disease, described specifically as "extensive bony metastasis." Needless to say, these events prompted some very significant life changes for me.
I will always feel enormous gratitude to a very special quality-of-life navigator at my cancer center, who stepped in at the precise moment that I felt myself slipping into what seemed like total darkness. This moment, which involved a terrifying panic attack and the feeling of the universe collapsing upon me, was a moment that could have led to hopelessness. This navigator's very wise words that day were a lifeline. He said something to the effect of, “I know it feels like the end of the world, but breathe deeply, close your eyes, and try to imagine an openness, spaciousness, and also opportunity.”
It seemed pretty far fetched then, and still kind of does now as I write this, but sometimes the worst experiences can lead us to some amazing and unexpected places.
Receiving the prognosis of stage IV cancer was a most incomprehensible moment. My medical oncologist at the time described it this way: “You may live this long,” with her hands in the air, measuring imaginary time with only a couple inches of space, “or this long,” extending that space between her hands to about a foot.
“What does that mean?” “How long do I have?” I wondered. I asked her for a more specific time frame, and she gave me the existing statistical numbers in years. Seeing the look on my face, she quickly said: “But who knows?” She also said that time can be "generous," and “We don't know what is going to happen, so let's deal with now.” That now involved a talk with the navigator, a kind fellow named Marcy, who helped me to open my mind.
Interestingly, with Marcy's words, I was able to find a place of calm. One of the first questions he asked me was my age: 42. His response was "oh, you're still young, that's good." “Whoa,” I thought. He then asked me about my life, what my job was, what my family situation was, what kind of support did I have, what did I do for fun, and also, most importantly, what activities made me the most happy.
By seriously thinking about and answering those questions, it did not take me long to see that this diagnosis could very well be an opportunity. Shocking. Marcy helped me to see possibility and to define and figure out what I really wanted and needed from my life to survive as long as I could, in the best way that I could.
Although I liked my job, I knew a change was in order, especially considering a new and different time frame, and also, the physical challenges that would present themselves in my immediate future. Being a forever cancer patient was going to be an intense job in and of itself.
Identifying my support, current and potential resources, and my joys in life led me to the direction of choosing an early retirement from my job as managing editor and graphic designer at a university, and deciding to focus on creating a life that I had only imagined for my future self. This life involved working less in front of computer, and devoting myself more wholly to my artistic life.
I have been a serious artist my entire adult life, but it was challenging to reach goals and fully embrace a professional artistic practice until I had more time to do so. Now, I was so profoundly aware of the uncertainty of time and life in general, I had to push forward without hesitation. I am extremely fortunate to have had the encouragement and support to do this.
It felt like jumping off a cliff. I was terrified, but also felt a certain sense of freedom. Since then I have done and experienced many things that I may have not been able to actualize without the weirdness of uncertainty. I applied for and received a competitive grant to support my work. I rented and have maintained a small but lovely professional studio. And I have presented a small solo exhibition at a state art museum.
Most recently, I curated a large international exhibition in a nonprofit, museum-style gallery called 516 ARTS in Albuquerque, New Mexico, where I live. The exhibition, titled Cross Pollination, and running through November 11, is about the intersection of art and science, emphasizing the importance of bees and other pollinators. This is a subject that is close to my heart, as I am a backyard beekeeper, and my interest in bees goes beyond strong to obsessive.
Making the choice to serve such a large role in such an extensive project was a difficult one. The process of putting together an exhibition of this size, which included selecting and coordinating the work of over 20 artists, and developing and completing off-site projects, special events, and educational programming, took not only a lot of effort, but a lot of time — nearly 2 years.
Before I fully committed, I wondered out loud to a therapist: “Is this possible, is this wise, and will I be around to see this through? What happens if I nosedive? What happens if my treatments fail?”
These are questions that I imagine most stage IV cancer patients ask themselves on a regular basis. While all people face uncertainty, uncertainty hangs over my shoulders with a defined heaviness. I do my best to live in the moment as much as possible and to be less attached to time, but it's difficult. I often feel haunted. I frequently imagine the "ping" of a silly little timer that goes off without much volume or fanfare, but is the certain declaration of the end, announcing, “game over.”
I recently read the book The Bright Hour: A Memoir of Living and Dying, by Nina Riggs. There is so much beauty to this book. I really loved it, despite knowing how the story ends. I especially loved Riggs' references to her favorite writer, Michel de Montaigne, whose most well-known quote translates to, "What do I know?"
Indeed, what do I know? I don't know how much time I have. (I have even spent a lot of "time" thinking about time as contracting, expanding, and being altogether non-linear.) What I do know, a least a little bit, is that I will continue, for however long, to live fully, move along, and work towards whatever is in my heart, mind, and inner resources to do.
Learn the facts. Support the cause. Know Stage IV.