MY LIFE Matters - Health Literacy - 9

BEATING THE ODDS Powerful Patient Stories
specifics of my diagnosis, I knew it was TNBC, but no one educated
me that there were grades or markers, and with my lack
of breast cancer knowledge, I didn't even know to ask these
questions. Was my treatment the norm for what Black women
experience or was this a result of being diagnosed during the
COVID-19 pandemic? I will never know for sure why it happened
this way, but I do know I felt gaps in my care, and that
to improve health outcomes the system needs to change; health
literacy should be a priority alongside patient care.
When I was diagnosed no one told me about advocacy organizations,
no one mentioned that there was a community of
Black women with TNBC at different stages of treatment that
were advocates in a supportive community, sharing knowledge
and resources. In the beginning I did not know how to connect
with other women impacted by cancer. I did not have any close
friends, family, or colleagues who had breast cancer or anyone
to connect with and receive support. Google became my ally,
and it brought on more anxiety and fear with every click. I can
see why the saying " knowledge is power " is so important. I was
desperate for knowledge, but without really understanding my
diagnosis the internet became a dangerous place, sending me
through a tunnel of doom and sadness. I did not know where
to look or what information applied to me and my cancer. The
more I looked the more my fear increased, impacting not just
my mental health but my overall health. I was scared, sad, and
alone which led to anxiety, sleep problems, and panic attacks
that required medical support. This is what happens when you
are left alone to do your own guessing on your diagnosis. I
wonder how this would have been different had I been given the
tools, resources, and medical support I was so desperate to find.
One thing I didn't need to search for was my fear of dying.
It was real. My fear of not being here for my family was real.
My fear of breast cancer was real. It took 12 rounds of chemotherapy,
25 rounds of radiation, a bilateral mastectomy,
and becoming a Tigerlily ANGEL before I really was able to
understand the meaning of my diagnosis. My initial diagnosis
was stage II invasive ductal carcinoma-TNBC. Through the
Tigerlily ANGEL program, I learned about genetic testing, the
importance of clinical trials for Black women, and the importance
of advocating for yourself. I became
empowered with knowledge and made it
a point to use it to my advantage.
Shortly after my reconstruction surgery,
I noticed my right breast looked abnormal.
There was quite a bit of redness
and the location where my drains were
coming out had a fowl smell. I immediately
sent an email to my plastic surgeon
who responded that it is " normal " for
this to happen. At the time I did not
keep pushing, I did not feel comfortable
second guessing my medical team and
trusted that they knew best. But how
could they know if they did not listen
to me? Why were my concerns not taken
seriously?
MY LIFE MATTERS
HEALTH LITERACY ISSUE | SUMMER 2023
9
A few days went by and something in my gut just didn't
feel right, so I made an office appointment. As my husband
and I were sitting in the exam room waiting for the doctor,
I could feel something just wasn't right. When the doctor
came into the room, she spoke very fast as she was examining
me. She proceeded to cut part of what I now know
is necrosis. She stopped speaking as she continued to cut
and squeeze and cut and squeeze. I laid on the exam table
completely horrified. Finally, she said " we have to get this
expander out immediately, you have an infection. " In my
head I was screaming " YES, I KNOW! " But I was so traumatized
by what just happened, I said nothing. I left the office
that day with my right breast packed with gauze, clothes
soaked from the exam process, and went home to wait for
further instruction.
MY LIFE Matters - Health Literacy

Table of Contents for the Digital Edition of MY LIFE Matters - Health Literacy
