This was published on YACC’s (Young Adult Cancer Canada) website. Its a huge honour to be asked to write about what its like living with metastatic cancer. Its an honour that I don’t take lightly. The gift to share my life, my journey and my reality with others has been empowering. To have a voice and be accepted is immeasurable.
Today was the first day of snow. I don’t like the cold but I love it when it snows. There is something cathartic about looking out your window to find that the world is coated in a fluffy white blanket. My son and daughter chatter with excitement as they pull on their snow suits. My five year old, on his way to school turns and looks at me with a big smile and says,“Kai and I are going to pick up as much snow as we can… AND… EAT IT”. Kai is his best friend. They have been together since they were two. His eyes sparkle with excitement as he continues “then after that…. we will stick out our tongues to catch snow flakes.” I laugh and hustle him out the door.
As his mother I should set barriers. I should tell him not to eat the snow off the ground. At the very least I should tell him to watch out for the yellow snow. Instead I just smile and send him on his way. I smile because I don’t want him to see the world with limitations. I want him to fully experience life and dive deep into every opportunity. I want him to be free to eat freshly fallen snow. Cancer has made me hungry for moments like these. Hungry for the escape offered in new landscapes and seasons. Hungry for milestones. Hungry for a life without limitations. Hungry for time to slow down so I can savour every second.
This fall has been hard. This fall I have grieved a lot. The death of many of my peers has forced me to embrace mortality. I am 37 years old and I have been living with breast cancer for over two years. My breast cancer is not pink and inspiring. It is not the kind of cancer that you move beyond as a survivor. It is advanced and it is metastatic. My cancer will eventually be the cause of my death. To make things worse my cancer is a part of me. Its hard to be outraged at myself and at something I can’t control. If it was foreign and separate I could direct my anger at it. Sadly, my death will be caused by my own cells rebelling and breaking the rules. Parts of my breasts have run rampant through my body refusing to accept boundaries.
Over the last two years I have found awkward peace with my diagnosis. A complicated acceptance that has changed the way I look at living. For me cancer has magnified my humanity and intensified my relationship with mortality. Dying is integral to the human experience. It is not unusual to have to face death at some point in your life. What is unusual is that I have to face it in my thirties when I have just started to get the hang of living. To live so closely with death and dying in your thirties is not normal. It is with this in mind that I choose to live as real as possible. To live exposed and vulnerable so that I am open enough to absorb all that life has to offer. In one moment I can feel like I’m being smothered by darkness and then in an instant without explanation I can be uplifted in light and hope. Its in the grey between those contrasting moments where I struggle the most. Life is complicated that way. Complication is human and its real. Living with cancer and uncertainty magnifies this. It creates an urgency to live now and in the present. I find myself desperately trying to capture my potential, grasping and clawing at every opportunity. My cancer has forced me to live in the moment. To live fully in a life that is condensed.
As a culture we tend to celebrate that way of living. We build our inspiration from people that we believe exemplify living life to the fullest. Living this way is exhausting. Living in the moment without confidence in your future can be ominous. It can be complex and conflicting. There is both freedom and oppression in living condensed. I no longer talk about someday. I just do or I don’t. I hold family dance parties in my living room whenever I feel like. I encourage my children to eat snow. We take trips we can’t really afford to places I’ve never been. We focus on building memories and spend time with friends and family. Often I have to fight through nausea and exhaustion to participate in milestones and adventures. The first day of kindergarten, a birthday party, or exploring New York for the first time. We have even flown our family to Disney with two weeks notice. My husband and I are careful to record these moments so that our children can remember when we lived condensed. So my husband can remember the life we lived and built together. Hidden deep down beneath these moments are feelings of grief and pending loss.
Contrasting my drive to live condensed, there are days that I just cannot get out of bed. Days that I agonize over hours I have lost in waiting rooms of doctor’s offices. There are days that I just can’t stop crying. Days that I feel as though I have not lived hard enough. Days that I long for my freedom. Freedom to just be. Freedom to make mistakes. Freedom to be angry. Freedom to be human. Freedom from uncertainty. Freedom to live without limitations.