This blog post is by METAvivor board member Karin Petrocelli. Despite entering hospice care in December 2019, Karin has persevered and run this year's Southwest Florida Metsquerade which has raised nearly $200,000 for research in 2018 and 2019. We love the passion of our volunteers and their desire to fund research for metastatic breast cancer. Karin defines, with grace and humility, the very best of the best.
My Passion for Research by Karin Petrocelli
I was diagnosed with early stage (stage I) breast cancer at age 45. I was told it was so early that I had nothing to worry about. Therefore, after a complete mastectomy of my left breast I moved on and didn’t worry much about it. However, I did become a PINK warrior and felt like so many other early stagers that, awareness was the most important. I participated in every PINK event I could as a proud survivor and was glad the cancer chapter was behind me. However, four and a half years later something felt wrong on my left side. Since I no longer had any remaining breast tissue on my left side, it didn’t occur to me that it could be breast cancer again. After several months of tests, scans and doctor’s appointments, in May of 2012, I found out that the breast cancer was back. The biopsy revealed that it was the same cancer from before that had laid dormant in my body for almost five years. This time it was stage 4 and soon I learned it had no cure! I was in shock, I had done everything right, mammogram every year since 40 and I was in the best shape of my life. I had run a half Marathon six months earlier… WTH?!
Obviously, the mammogram that found my early stage cancer had not saved me. I am not saying that mammograms aren’t a good diagnostic tool to find early cancers, they just are not always what they’re made out to be. Once I came through the sorrow, fear, denial and finally the acceptance of my diagnosis, I began to educate myself about the disease in every way possible. It didn’t take long to realize that there was a vast lack of support for MBC (Stage 4) patients in the breast cancer community. Everywhere I saw people celebrating survival, final treatment programs; how they’re moving on from breast cancer and most of all, PINK, everything was pink!
Millions of dollars were raised and spent on awareness programs, improved mammograms, self-exam pamphlets and more pink. Nowhere did I see or read anything about the uncurable form of breast cancer that I was living with. That was, until I discovered METAvivor. By following their website and Facebook page, as well as joining Facebook groups about MBC I found a plethora of information. Finding METAvivor and discovering what they were all about was an affirmation that just because organizations claim to be “for a cure” doesn’t mean that is true. I knew then that awareness alone was not going to help me or anybody else, only research would help me. When that became clear, my passion for research emerged. I knew I had to do something.
I learned in 2017 about the Metsquerade in Arkansas that was organized by two MBC patients, I was in awe of them. 100% of the net proceeds from their Metsquerade went straight to research. I knew I could put on a great event in Southwest Florida where I live as well. I just needed to convince my family and friends to back me up. I was lucky, I got a great team together and we did it. During our first two events (2018 & 2019) we netted around $200K for research.
Last April, right after I had booked the venue for our 3rd Metsquerade, I was voted in as a board member with Metavivor. It was a great moment for me. Now, I had a say in where the money Metavivor raised during the year goes and I could be a part of the future of this wonderful organization.
During this same time, I was told that the IV chemo I was on was no longer working and that I had run out of options. I was stunned and devastated, but within a week, my oncologist had found a clinical trial for me and, luckily, I qualified. The clinical trial worked well, and I was able to continue my work with Metavivor and including the planning of our 3rd SWFL Metsquerade. For about four months, life was great, with several family trips and lots of quality time with family and friends. Then, in a split second, it all changed. I was brought to the hospital by ambulance with severe vertigo, nystagmus and vomiting. After numerous tests and scans it was determined that it was a side effect from the clinical trial and also, the trial was failing. The cancer was growing again. Another biopsy once again revealed that there were no more options for me and after 7.5 years of trying everything possible, my body had enough. Therefore, I signed onto home Hospice in December of 2019. I decided to live my best life during whatever time I have left rather than living it suffering from debilitating side effects from harsh chemo therapies that most likely won’t work anyway. I don’t consider it giving up. I have simply accepted my fate and I am enjoying my last days and living them to its fullest. Of course, I have worries and my biggest worry is not being there for my daughters. I so want to be there for their big and small moments and share in their joys as their lives go on, but that is not to be. As for the life I’ve lived, I have no regrets, I have lived a wonderful life and I credit my awesome husband, daughters, extended family and friends for making it this far.
As for the 3rd Annual Southwest Florida Metsquerade, it turned out great. The event took place on February 29th, 2020 and was our most amazing gala yet. I’m still in charge but, I have an amazing team of family and friends making it happen for me. I am still passionate about research and will do everything in my power to support METAvivor and their mission until my last breath. I am not doing it for me (it was never about me), I am doing it for my four beautiful daughters, for you and your daughters and for all the people out there living, thriving, surviving or even pre-viving metastatic breast cancer. My passion for research and its possibilities, gives me solace as I enter the end phase of my journey.
Life is Good