This article, beautifully written by Vesna Zic-Coté, was first published in June of 2018. It is so insightful into the world of Metastatic Breast Cancer that it bears repeating.
‘Stage 4 meta…say what now?’
A few weeks back, I was asked if I could provide some context or understanding about why I would choose to advocate for the Metastatic Breast Cancer (MBC) community at this point in my life. With a terminal illness looming over one’s head, some people might put their focus on their loved ones or their bucket list or whatever else brings them happiness. These are all valid choices. My focus is to speak about my truth without judgment on anyone else’s decisions. For me, the reasons to be an advocate are as general as they are personal.
This encounter provides one such explanation. At the time of this writing, the citizens of Ontario were in the midst of an election campaign. The timing brought great opportunity to someone like me working to create change in governmental processes by way of our elected representatives. A few days ago, a volunteer for one of the parties rang my doorbell and cheerfully asked for my support. I went into my spiel, explaining that I will support whichever candidate will help with my attempts to improve the drug approval process in Ontario.
We spoke briefly and she asked if she could write down my contact information for a follow-up discussion with the candidate’s office. I gave her my name, contact information, and explained that this initiative was important to me because I am living with Stage 4 MBC. And, this friendly volunteer started writing in her notebook and gets to – you guessed it – ‘Stage 4 meta … say what now?’
So, I spelled the words out. I explained what they meant, and I watched the realization wash over her face in one smooth wave. An opportunity to teach was not missed. Because despite all the breast cancer awareness campaigns of past, there are simply too many people who have no idea that MBC exists. And, that it affects so, so many people (not just patients, but a community of loved ones that surround that person). A community desperately asking for help as we cling to treatments, hoping that our team finds the one that works for us before our time runs out.
On another level, I advocate for my children’s mother, my husband’s wife, my sister’s sister and my mother’s daughter. I advocate for every version of me that exists in this beautiful world. I speak up because there is power in storytelling. Because I truly believe that before anyone will care, first they must understand. And, I have been given a second chance at life to help people understand.
Living with MBC
Those closest to me will know the impact of my current treatment plan has been nothing short of miraculous. I was dying, slowly suffocating in lungs marked with diffuse disease. Unable to inhale without cough or exhale without effort. Treatment began and every day improved, one breath at a time. Broken ribs healed, nodes decreased, pain improved. There are still struggles in my every day – let’s be real – but I can function to a degree that was impossible 18 months ago.
This transformation is thanks to my doctors and science and logistics and some old-fashioned good luck that got me where I am today. But, the reality is that research and science and statistics tells me that I will eventually need another treatment plan to buy me more time. But, no one knows quite when this need will arise. Could be next year. Or next week.
Living in this world for a year now, it seems that changes and declines can happen very, very quickly. So, I live with a degree of urgency for EVERYTHING I still want to do. It creates conflict and stress in many aspects of my life, and it is something that I am working on to manage.
Why I advocate
And so we come back to why. The truth is, I am an advocate because I want to live. My intentions are as selfish as much as they are altruistic. I want to know that I’ve done everything I could do to help with a process to heal myself. I want to know that when I lay my head down for the last time, I have taught my children that you can still stand even in the most difficult of circumstances. That I tried. Really, really tried to be here as long as I possibly could.
And for me, that sometimes looks like reading a scientific study on a beautiful sunny day. Or, opening myself up to both support and criticism. Or, getting others to understand another side of the pink ribbon story. Even, flashing a spotlight on a story that was most comfortably left in the shadows.
For me, this is my best living. And for today, I am okay with that.
Vesna was diagnosed with early stage breast cancer in 2012. After several years of remission, her cancer returned, requiring active treatment for metastatic breast cancer since March 2017. She finds joy in photography and gardening, as well as actively participating within the communities of her children’s activities as a piano/dance/hockey/baseball/soccer Mom. She is one of the founding members of O.M.G., a monthly gathering of young(ish) women diagnosed with breast cancer and a member of Rethink Breast Cancer’s MBC Advisory Board. Vesna is a wife, mother, daughter, sister, friend. And advocate.
Vesna is also the namesake, inspiration, and model for the Vesna Cardigan. Five percent of direct to customer sales are donated to Rethink Breast Cancer’s Metastatic Breast Cancer support, education, and advocacy work.