Our expectation for a cure, not simply more awareness, is what needs to be raised now."
I knew when the message my doctor left requested I call him back. Previous negative results for scanned or biopsied ‘scares’, were reassuringly left on my voice mail. I knew there was something. With a deep breath I returned the call reminding myself that at least, anything found, clearly had been detected early and I’ll simply be a two time survivor.
When I heard him saying words like, ‘same cancer’, ‘distant recurrence’, ‘metastatic’, ‘stage 4’, I stopped him stating I didn’t understand what he was saying. I clarified I understood what metastatic meant, I simply didn’t know why he was using ‘that word’ in a conversation with me.
Impossible. Incredulous. Incurable.
And with that reality, my life has been transformed. I did not know the depths of my ignorance about metastatic breast cancer. Today, I know much more. I understand the facts and continue to educate myself and others. The biggest challenge I faced initially, was wrapping my head around the concept that there would be no finish for me. I’ve confronted many challenging life events, including my diagnosis and ten months of grueling treatment for early stage cancer five years earlier. I endured these challenges knowing I just had to get to the other side. With confidence, I trudged through and survived, knowing this will end, that indeed, it will be over. Not the deal with metastatic breast cancer. We don’t cross the pink ribbon cancer finish line. Our experience with cancer ends with our death. Which, accordingly, will be significantly sooner than anticipated.
So today, my perspective has shifted towards how to embrace a meaningful, purposeful, joyful and peaceful life, while living with this MBC disease. I have discovered that because I live every day without the illusion of infinite time, I don’t waste any of it. I am able to approach each day with a clarity and appreciation and laser sharp focus on priorities as I have never experienced. For me now, each day is the goal and the moments and experiences that unfold within are my milestones. My decisions and actions are continually based on deeper acceptance and seeking a balance between the quality, and longevity of my life.
This personal approach to attaining happiness and serenity in my daily life does not translate to acceptance that an unknown number of women and men must continue to die with a stage four metastatic breast cancer diagnosis. I do not accept that my daughter (or son), or my yet unborn grandchildren, must be resigned to repeating my experience should this disease be part of their lives. Early detection saves many lives. We know this is accomplished through self exams, mammograms and treatment accessibility and affordability. However, our expectation for a cure, not simply more awareness, is what needs to be raised now. This is accomplished through allocating a greater percentage of research funding towards MBC. This can be accomplished, for starters, by compiling an accurate determination of how many are living with MBC, through a recurrence or initial diagnosis, not merely footnoting us as a number after our death.
When I told my children in 2009 that my early stage breast cancer diagnosis was not the death sentence it once was, I was able to offer them hope. Five years later, I had to explain the inexplicable and incomprehensible reality of ‘This Time.’ Make no mistake, we live with love and happiness and serenity and hope. But we also live with the burning yearning for a cure.