Blogger Anna Craig wrote this original post about living with stage IV triple-negative breast cancer for our TNBC Aware series.
I am 38 years old and I have stage IV triple-negative breast cancer. This is the bad kind of breast cancer that no one really talks about. It is incurable and will ultimately take my life. Triple-negative breast cancer is defined by what it is missing. It is the left over breast cancers that do not have one of the three known receptors; estrogen, progesterone and HER2. More likely to occur in young adults, triple negative makes up 15% to 20% of all breast cancers. We are a minority.
Living with metastatic breast cancer is like playing a game of Whack-A-Mole, where each person has a finite bag of mallets. When a metastasis shows up on a scan you try to whack it on the head with a mallet. Sometimes it works, sometimes it doesn’t. When it doesn’t, you grab a new mallet and keep whacking until you run out. As you can imagine, the bigger your bag of mallets the more likely you are to extend your life. Unlike HER2- and hormone-positive breast cancer, triple negative does not yet have targeted treatments like Herceptin. My treatment options, outside of clinical trials, are limited to chemotherapy, surgery and radiation. This means my bag of mallets is much smaller.
Having metastatic breast cancer in your 30s is complicated. As with most young people my age, I am in the thick of my life. I have two small children and a budding career as an architect. Until cancer, I was healthy, active and ambitious. I had patiently begun to build my life. I had even started to discover things that inspire me to dream without limits. My life was just starting to take flight, when in an instant, cancer happened and my world crashed at my feet.
I’ve always been a person who embraces the idea that life is a journey. I pictured my career as a long twisting road of discovery. My twenties and thirties would be about understanding how buildings work and how materials come together. I would take time off to have a small family. I would balance my career and my ambition with parenthood. Life would be thick, active and vibrant.
In my forties and fifties, I would start to come into my own. I would create a body of work that was imaginative and inspiring. My buildings would have spaces full of light, texture and meaning. In my sixties and seventies, I would travel the world and work on a few special projects. My buildings would reflect my wisdom and grace. I would be an eccentric old architect with lots of grey hair, wrinkles, colourful socks and brightly patterned clothing.
Triple-negative breast cancer with its never ending toxic cycles of chemo derailed that life. Instead of balancing my career with my family, I have spent days and weeks in bed. Cancer can be very isolating. Sometime I get so trapped in my illness and my discomfort that I struggle to relate to the people around me. The more time I spend in bed, the more my dreams and passions drift away. Often I feel very alone, vulnerable and angry.
My feelings are complex and hard to understand. My internal dialogue is often unyielding and unforgiving. “Shouldn’t you be happy that the chemo is working?”
“You should be making the most of this moment, why are you in bed?” “You just lost a whole day on the couch watching Harry Potter.” “Why are you so angry, they are just trying to help you?” It is hard to be kind to yourself when you are under the tyranny of living condensed.
I am finding a great deal of strength and support in community. I have begun to attend any and all Young Adult programming that is available to me. Saying that, I’ll still walk into a room full of young women with early stage breast cancer, terrified that someone would ask me what type of breast cancer I have. I’m finding the more I give voice to my story and become an active participant in my community the more comfortable and empowered I feel.
I have connected with dozens of other men and women living with advanced, metastatic and incurable cancer. This group of people understands what its like to face mortality at such a young age. We can stand in a room together and talk about the mundane without having to address being metastatic. We can share our stories, our dreams and passions without needing to explain why we are living condensed.
It is indescribably empowering to be surrounded by people who are walking in your shoes. To be surrounded by men and women who are discovering themselves and their passions within a metastatic diagnosis. As a group we are finding ways to live fully while juggling hospital visits, treatments, surgeries and uncertainty.
These connections have been immeasurable. They have given me the strength and confidence to be kind and accept myself and my diagnosis. They have shown me that its okay to dream big and that accomplishment aren’t about the end goal but the process and the journey. Being part of a community is about being able to stand at the edge of a cliff with leaning into the wind with the sun in you face and the comfort from holding hands with the people around you. There is empowerment in knowing that your not alone in this journey.
Read more about Anna’s experience with stage IV triple-negative breast cancer on her blog.