MY LIFE Matters: TNBC Patient Voices Issue 2022 - 6

ANGEL Advocate HAVE FAITH
I want women
to hold on,
a change is
coming, and
we are going to
make it.
up the stairs, and the last thing I remember was waking up on
the floor in my fiancé's arms. He was yelling at me " babe, babe!
Do I need to call the ambulance? " I know that I scared him to
death because I didn't know what to say to him or even recall
passing out. I just told him, " I am tired and want to lay down. "
This was the first time that I think I noticed the extreme worry
in my fiancé's eyes.
Once I was settled into bed, he called my oncologist to share
what had happened. My oncologist advised that it could have been
my body feeling extreme exhaustion and possible dehydration.
My fiancé never left my side while I slept, and to this day, he is
still watching over me and taking care of me.
Instead of feeling defeated every day, I immediately leaned into
my faith. I found my smile and that glimmer of light. I found
moments in each day that made me look ahead and allowed me
to dream wholeheartedly and breathe deeply-feeling the comfort
in knowing I am here. Looking back, I feel it was my faith
that guided me as I continued day after day of treatment. I am
learning more each day as I continue my journey with TNBC,
and as I become more involved in advocacy efforts. Although I
did not choose this path, I am very proud of my life and have
never felt more alive.
Family health history was not a term I had ever heard before,
and the reality is that I wasn't even sure about the health conditions
in my family. When I was diagnosed with TNBC, my doctor
shared he was going to run a genetic mutation test. Unfamiliar
with that type of testing, I just went with the game plan. When my
doctor shared that the test could come back 95 percent negative
and 5 percent positive, I knew I would be negative. Not only did
I think the test would come back negative, but I also believed I
was " healthy. "
However, to learn I was BRCA1 positive, and that this was
the reason for my diagnosis caused me to feel unhappy for the
lack of communication in my family. As this was now a part
of my journey, I promised myself that I would use my voice to
communicate to all who would listen about this ugly disease. I
6
MY LIFE MATTERS
TNBC PATIENT VOICES ISSUE 2022
am still advocating to other family members
about the importance of getting tested, but
without much success; they are fearful of the
potential results. I have shared with my family
the importance of this test, as it will show
the potential likelihood of this disease in our
family now, and in the future. No one should
be unaware of their family's health history.
Communication is key when it comes to
knowing the likelihood of developing cancer.
There needs to be communication within family's
where health history is a factor. Also, the
medical teams need to be held accountable for
sharing more information about what's available
for preventative testing and options. The
standard medical history questionnaire isn't
enough to help others in today's time of events.
As, I learned I was BRCA1 positive, my sister
also learned she was as well. Cancer runs on
my father's side of the family, but because of
a lack of communication, my sister and I had to learn about this
in the most unsettling manner. If I knew about this gene mutation,
I could have managed my health in a different manner.
Not only to do the things I had done, but to also be an advocate
in my doctor's office to have other monthly/annual precaution
screenings where preventative measures could have taken place.
I can't speak for my sister, but I am using a loud voice to scream
about the importance of communication and to ask your family
questions. Also, encourage people to ask their physicians for a
gene mutation test. Know that you have an option to learn more
about your health from a gene standpoint. It's vitally important
to be a " voice and not an echo " to know something important
and not share it. Sharing is caring, as my Grandma would say.
So, because I care for my community, I will be a loud supporter
of gene mutation testing. This will allow others to know who they
are and where they come from.
BECOMING A TIGERLILY ANGEL ADVOCATE
When I located the Tigerlily Foundation page on Instagram, I was
so happy to see other women like me. The page highlights women of
color who I had been looking to see that could help me understand
this stage in my life. When I was diagnosed, I didn't have anyone to
turn too that would understand me or whom I could ask questions.
This foundation changed everything for me.
Tigerlily gave me resources, comfort, and a community of support
that kept me going. This amazing community is the reason
I wanted to become an ANGEL Advocate. I wanted to ensure I
used my voice in a way that would help others, and to be a part
of a mission that held the same passion I did-to create equal
opportunities for women of color when it comes to cancer.
I have been lucky in that I have not faced any disparities within
my journey, but some of my " breasties " have not been so lucky. It
feels strange to say that I am happy to have felt I received equable
healthcare, right? This should be the standard of care for everyone.
Every human should feel they are receiving the appropriate standard
of care without discrimination, racial biases, or disparities.
MY LIFE Matters: TNBC Patient Voices Issue 2022

Table of Contents for the Digital Edition of MY LIFE Matters: TNBC Patient Voices Issue 2022
