PATIENT ADVOCACY, FINDING MY PURPOSE
I have been living with Metastatic Breast Cancer for almost 3.5 years. For the last two years I have been saying that I wanted to be a patient advocate. I wasn't sure what that meant. I just knew that I wanted to help others like myself, while I still can. I have this innate drive to attach meaning and purpose to this crappy hand that I have been dealt. Last year has been busy. I stepped outside my comfort zone and begun to explore the world of advocacy. I have spoken on television not once, but twice! Which is crazy to think, that this chubby girl put herself out there for the world to see. So many insecurities were flying through my mind but the message I had to share was SO important and therefore I jumped in with both feet. I feel that I have a good handle on my personal story and I have been using it to bring awareness to stage 4 breast cancer, that there is no cure and 116 people die every day from MBC. I feel good that in my small community I can be a ripple. Hopefully, that ripple will be a tidal wave and more people will learn what advance stage breast cancer is all about and feel invested enough to do something to make a difference. Currently, Shannon Doherty is being very vulnerable. She is in the public eye and stating the stark reality of stage 4 MBC. That it is terminal. We need more celebrity trailblazers to stand up and speak our truth.
Awareness won't save lives. Hopefully, it will raise money for much needed research. That has been the next step in my advocacy process. I was awarded a grant and in September I went to the Theresa's Research Foundation 6th annual Metastatic Breast Cancer Conference in Scottsdale, Arizona. There I learned from and talked with clinical researchers and amazing oncologists. I also mingled and connected with other stage 4 advocates. It was surreal to be with all of these amazing stakeholders. I learned so much that my brain hurt; but my soul was on fire to do more for breast cancer research. I would like to sit on panels as a patient advocate and help select research studies. I want to better understand the science behind breast cancer and be able to have meaningful conversations with researchers and doctors. I have applied to attend an institute in California to learn all there is to be the best advocate. Fingers crossed that I am selected. I still don't know if I totally understand what a patient advocate means. But when I am asked I will share my story, I will attend medical conferences to better understand breast cancer and I will take it to the government. Yup, that's right. I am not very keen on politics but I sort of have a vested interested in policy makers. I recently shared my testimony at a senate hearing in regards to Senate Bill 612 which wants to fix prior authorization and step therapy. It was daunting to sit in front of major policy makers; but I want to be in the room where it happens. I want to help change the landscape to the benefit of people living with chronic medical illnesses.