Fifteen months have passed since my life took an unexpected turn with a diagnosis of metastatic breast cancer. Since then, anytime there is silence on our social media accounts, I get private messages asking, ‘How are you doing?’ And it warms my heart to know that you're with me on this journey.
My weeks are a symphony of scans and appointments, a continuous rhythm that has become my new normal. And yes, I will always be on one or another type of chemo. And no, I won’t be done with it. Ever. When it comes to discomfort, I have pain. I’ll always have some pain, but I can live with it.
To those friends and family who have followed my journey through this blog, you remember the challenging six months leading to my diagnosis. The confusion, the fear—those emotions were all too real. And the emotional toll that followed was profound. The statistics were terrifying.
“Only one-third of women diagnosed with metastatic breast cancer in the U.S. live for 5 years after diagnosis.”
I needed some space to get comfortable with my diagnosis. I needed time to find my strength and search for a purpose for the time I have left. Yes, writing is our profession. It pays the bills, so that had to continue. But there were deeper questions that kept me up at night.
What more can I do with the time I've been given?
How can I help people who are going through the often scary stages of diagnosis?
How can I support others living with MBC, now and in the future?
Jim and I have always believed in the power of giving back. Early in our marriage, our wise landlord, Tom Kepple, shared a lesson that stayed with us: "Always give more than you take." In a way, his words were an echo of Martin Luther King, Jr.: "Life's most persistent and urgent question is, what are you doing for others?"
With those words as our guide, Jim and I decided to dedicate our time and energy to advocacy. I found my calling in patient advocacy, while Jim is getting involved with caregiver advocacy.
Advocacy starts with each of us, as individuals, speaking up. It's when the appointment schedules don't align with our lives, when medications bring debilitating side effects, when second and third opinions are essential. And later, it’s when we share our experiences, offering empathy and practical insights.
Breast cancer is a multifaceted challenge, and my focus is on helping patients ask questions and finding resources. I decided early on to share my journey, and hopefully, to inspire others in embracing life fully.
The realm of advocacy is vast and unending, but I'm committed to immersing myself in it, learning, and being a voice for change. As I prepare to attend my first in-person medical conference as a patient advocate, I'm mindful that there are no long-term guarantees for MBC patients like me. However, I refuse to let statistics define my path. I am a unique statistic, ready to empower, educate, advocate…and live.