Giving You the
HOPE & RESILIENCE
to keep Thriving
I AM LIVING WITH MBC NOT DYING
When I initially was diagnosed in 2009 with MBC I started a Non-Profit called Survivor With A Good God. I soon realized that a non-profit is not what GOD intended for me.
My daughter thought of A Survivor's Lens because I wanted people to see what its like as a black women to live with a Stage IV breast cancer diagnosis.
My website will give each reader a view of how important breast health is and if diagnosed with breast cancer the resources needed to help you through your journey.
Here's a little about me.......
In December 2009, I was 43 years old when I was diagnosed with Stage IV breast cancer also known as metastatic breast cancer. Metastatic breast cancer means the cancer has spread to other parts of the body like the ribs, liver or bone. Pfizer conducted a survey and out of 2000 surveyed 60% did now know what metastatic breast cancer is.
I was active duty military with the United States Air Force when I was diagnosed. The cancer had been caught late and the tumor had already spread to my liver and ribs. Years of aggressive treatment followed, including a bi-lateral right mastectomy and many rounds of chemotherapy.
This wasn’t the first time breast cancer had touched my life. My own mother died from metastatic breast cancer in 2004. My grief made me determined to honor my mother’s memory and legacy. The loss of my mother has been the inspiration behind all of my work and advocacy since my diagnosis. And my own diagnosis simply served to make my determination even stronger. That's why I have established the Grace Evelyn Johnson Scholarship Fund. This fund will help patients with incidentals related to clinical trials like gas cards, transportation, lunch and parking. No patient should have to worry about these kinds of expenses especially when they are trying to stay alive.
I’m on a mission
I'm on a mission to use my platform as a black woman to empower and support women and men diagnosed with breast cancer by sharing the useful tools and techniques I applied to navigate through my cancer journey. As a 11-year breast cancer survivor who has had to discover a new normal, I intend to use my voice to give women/men diagnosed with breast cancer a ray of hope by inspiring them through my personal experiences.
I take great strength and comfort from my faith, which helps me to find a greater meaning in life. My favorite bible verse is Matthew 17:20, and it inspires my work – ‘with faith, nothing is impossible’.
You are not alone.
I am committed to connecting with women living with breast cancer providing them with the most useful educational information. I am on the committee for The Right Dose initiative where we conducted a survey to ask MBC patients have they talked with their doctors about dosing. We recommend our physicians fully consult with us when discussing each treatment, consider our unique characteristics (age, race, body mass index, availability and quality of at-home care, history of side effects from prior drugs, CNS metastases, etc.) to jointly identify the best dosage for each of us as a unique individual.
Because together, we are stronger, I participated in an TLCTRANSFORM Twitter Chat hosted by The Tigerlily Foundation on Black Women and Clinical Trials. Five to six percent of black women participate in clinical trials and I advocate for more inclusiveness of black women by recruiters. My goal is to build a formidable community of powerful black women with a strong will to overcome the racial disparities in breast cancer diagnosis and treatment. We join forces to enhance synergy and act as a pillar for each other to lean on, enabling us to fearlessly forge ahead in life.
Collaboration is very important. It takes a village to continue to make change within our very own communities. Of course, I can’t do this without you! Allow me to empower you with impactful words, factual information, and real stories of survivors that may resonate with you. I believe that the most brilliant ideas are borne out of collaborations with other MBC patients and breast cancer organizations that understand the challenges black women encounter when faced with a breast cancer diagnosis.
I am a passionate and fierce advocate overcoming adversity to live and thrive with metastatic breast cancer (MBC). As a pioneer breast cancer advocate with a focus on the African American community, I strive to empower and support underserved communities using my voice to represent them. As a 25 year Air Force veteran I pledge to help veterans in their care if they are ever diagnosed with breast cancer. I retired from the military in November 2010 and I want to be help VA hospitals reach veterans all over. So many times veterans are left out of the conversation and forgotten about.
Advocacy is exhausting but necessary yet gratifying. Black advocates have worked with most major breast cancer nonprofits to educate them about the need for change. We are educated and informed women/men dedicated to making constant changes for our community.
Nothing about this journey has been easy. With all the medical jargon and the fear of cancer progression I sometimes face, I’ve learned to continually rely on my FAITH and my FAMILY. I seek to use my voice and my story to uplift women and give them HOPE. I work with a wide range of researchers, medical professionals and community leaders. I support my community in many different ways, including volunteering on the Living Beyond Breast Cancer Helpline and reviewing proposals for the DOD Breast Cancer Research Program.
I want to use my advocacy as a way to continue to carry along the many patients who have been diagnosed with breast cancer. We are In it to Win it. It takes a village and as a community we can't do this alone. Listen to how important clinical trials are and how we can collectively dispel the medical mistrust in our community and further research with all races included.
1 Peter 4:10-11 God has given each of you a gift from his great variety of spiritual gifts. Use them well to serve one another. Do you have the gift of speaking? Then speak as though God himself were speaking through you. Do you have the gift of helping others? Do it with all the strength and energy that God supplies. Then everything you do will bring glory to God through Jesus Christ. All glory and power to him forever and ever! Amen.
Along the way, I've met amazing people.
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