"My hope is that it may open the eyes of both breast cancer 'survivors', physicians, and drug companies to need of women like myself."
Like most women diagnosed with early stage breast cancer, the shock of receiving such a diagnosis was calmed by the reassuring words of my surgeon, who told me that I “would have a mastectomy and chemotherapy and would live a long happy life.”
I’m not sure why I remember those words so clearly, but they certainly became a flashpoint to me when, in 2016, I was re-diagnosed with metastatic breast cancer. Of course, my first response to the news was, “What do we do now, how do we beat this?” I was completely in the dark in regards to what the term “metastatic” meant, having never discussed it with any doctor previously. I was also completely in the dark as to how many women will be re-diagnosed with this incurable disease! It was just something that was not discussed; not with my surgeon, my oncologist, my social worker, or anyone. Everything was just so. . . . positive, back then. It was just an interruption in my life, something I would beat and then move on. It was like the entire medical community was in denial about Metastatic Breast Cancer, so they just chose to ignore it.
So, at 51 years old, just five years and two months after my original diagnosis, I was told that I had a disease that was going to take my life. At the time, I was told that I would definitely have one year, possibly two, and after that, there was no guarantees. Where does one turn after such news? Of course, the shock quickly turned to heartbreak and fear. For a short time, all I could think of was death. It was like having a radio turned to the same depressing channel all the time, no matter how hard I tried to turn it off. Alone in my car, I would drive by random sites and wonder if it was the last time I would see them ever. Luckily, after about a month, I was finally able to move on and focus on my future, albeit a possibly shorter future than I had envisioned a short time before.
I quickly made the decision to be treated at Dana Farber Cancer Institute in Boston, rather than at the local hospital I was diagnosed at, as I wanted to give myself every chance possible to live for a while. Thankfully, I live about an hour’s drive from Dana Farber (on a good day), so I am blessed to be able to have the opportunity to be treated there. To date, I have been treated with four different standard chemotherapies and three clinical trials. The standard treatments have all worked, for a time, but I have had little luck with the clinical trials, as the side effects for all of them has necessitated me being removed from the trial. But even failing at the trials makes me feel like I may have helped someone else in the future, so I don’t regret trying.
So, here I am, two and one half years removed from that terrible diagnosis, and I’m actually doing OK. My cancer has remained where it originally was, (in my chest wall and back) with just a small amount moving into one lung. Without a doubt, my life has changed, as each day I long to wake up in the morning and feel “like I did before,” which will probably never happen, but, I have not let myself be defined by Metastatic Breast Cancer.
I still work full-time as the Outreach Coordinator for the Plymouth County Sheriff’s Department, and I continue to volunteer for two projects that mean everything to me. Back in 2009, I was the fourth woman on my soccer team to be diagnosed with breast cancer. At that time, a friend and I started “Score for a Cure, Inc.,” a charity that raises money through an annual women’s soccer tournament in Plymouth which is then used to assist women in Eastern Massachusetts being treated for breast cancer through donations of gift cards for food and fuel, as well as house cleaning and yardwork services. Our 2015 event welcomed 63 teams (which now included women’s 18+, 30+ and 40+ divisions as well as girls U10/U12/U14 and high school divisions) and raised over $30,000, and we continue to grow each year.
My other passion is The Elephant Sanctuary in Tennessee, an organization that welcomes elephants retired from the entertainment industry to live out their lives on 2,700 beautiful acres in mid-Tennessee. As an Ele-Ambassador, I have raised awareness about the plight of entertainment elephants through my speaking programs, to date of which I have done 134 of!
My most recent project concerns Metastatic Breast Cancer directly. As most women who have this disease feel, I also feel that the disease has been completely ignored by large breast cancer fundraising organizations. I am horrified at the fact that women are not told about their chances of getting this disease at some point in their lives after their initial treatment for breast cancer. When I discussed this with both my past and present oncologists, their responses were the same: “Even if you knew, there was nothing we could have done, so what was the point?” The point was that I had five years that I could have lived differently! As a grown woman, I had the right to know, and I should have been given the information to do with it what I chose, but it was never given to me. If I was sent to the emergency room with a heart attack, and asked the physician what my chances are on having another one, he or she would have had no problem telling me. But for some reason, cancer is different. No one wants to talk about your future. Well guess what? I want to talk about my future! So, I am in the process of making a documentary about this very thing. How many of us are living with this disease? How many of us knew about the possibility of being re-diagnosed? Why is there so little information out there about this disease? Why is so little money being appropriated towards finding a cure? These are the questions I hope to put out there while interviewing women like myself in this documentary. My hope is that it may open the eyes of both breast cancer “survivors”, physicians, and drug companies to the needs of women like myself.