This blog is dedicated to the memory of Susan Pagnini. She fought the good fight and passed away on 9/6. She traveled her lonely road with dignity and grace. Rest in peace, Susan.
I am a woman who is very open about having metastatic breast cancer. I always have been and always will be. The support I get from others matters to me and lifts me up every day. Consequently, because I show no outward signs of being ill (especially because I’ve had no hair loss) people always comment about how great I look or what a great attitude I have. I often get the cringe-worthy “you’ll be fine” comment that used to make me respond with my patented rant about the reality of having stage IV breast cancer. (Although I didn’t, I wanted to scream “hey – I won’t be fine – I have a terminal disease!” ) Now, I use a gentler approach to educate those who make that comment, as I understand why people would assume I’ll be fine. Many people actually believe there is a cure for breast cancer. (Regardless of what you may think of “Koman for the Cure,” a huge downside to seeing the pink ribbon everywhere was that it unintentionally created the false impression to many that there is a cure for breast cancer.) Often, they simply don’t realize – being diagnosed with metastatic breast cancer is a death sentence.
I’ve learned, however that regardless of how open and sharing I am about being a woman living with breast cancer, being that woman isn’t always easy. For me (and for others, I suspect) having a terminal disease can put us on a very lonely road. We may even put on the “happy face” as a sign of our strength. Support groups (both on-line and traditional) and closed Facebook groups allow us to be ourselves without putting on that “happy face.” I’ve known many women with stage IV breast cancer (mostly through the on-line sites) who are no longer with us. After the initial shock, of being diagnosed, most are usually able to deal with the hills and valleys of living with metastatic breast cancer and this becomes evident through their posts. Our lives settle into a pattern of medical appointments, scans and treatments – all intended to delay for as long as possible, the inevitable progression. As the posters come to the end, however, they often release themselves of the “happy face” syndrome and free themselves of having to be strong for the people around them and also for themselves. Throughout it all, however, there is no escaping reality and that reality, from beginning to end, puts us on a very lonely road.
I can be in a crowd of strangers, and feel alone. I can be at a family gathering, and feel alone. I can be getting dressed to start my day, and feel alone. I can be having a great day, and feel alone. I can be wearing my “happy face” and feel alone. Since my mets diagnosis in late 2009, I’ve had moments of loneliness that have grabbed me and brought me to tears. Early on, I went to a social worker at my cancer center, but after one visit, I realized that regardless of her education and experience, she couldn’t help me because she really had no idea what I was talking about, She had never traveled the same lonely road.
When nothing helped, I decided that possibly, I could help myself by helping others. I found a program, “Writing About Cancer” and was able to get a grant to cover the licensing fee. The workshop is free to participants and is held at the cancer center at which I am treated. It’s open to anyone with any type of cancer. I do the assignments with the participants. For those four, 2-hour sessions, I am able to hear others’ stories, share their and my written thoughts and always realize that regardless of the type of cancer, or the stage, we all travel the lonely road. I’ve facilitated the workshop many times and have made friends with some of the participants. A few have passed away and I feel honored to have known them and shared our life stories with each other.
In the end, however, the road we travel as part of our life journey belongs only to us. While we like to think we control every aspect of every step on that road, there are always unexpected detours. Some bring us joy and help make our lives happy beyond anything we could ever have imagined. Some, however make us lose our way and forces us to stop until we figure out which direction will lead us to where we want to be. For me, having metastatic breast cancer often takes away my ability to decide which road to take. Whether I like it or not, whether I fight it with all my energy and common sense and even though I have the tools I need to control most of my life – I can’t control metastatic breast cancer. It is that reality leaves me stuck in the mud of the lonely road.
Don’t Stop Believing!
May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.