MY LIFE Matters: TNBC Patient Voices Issue 2022 - 33

COMMUNITY ANGEL Advocate
concerns, my fears, and my sadness. My
doctor stated that they didn't know what
it was (referring to my lump) but said we
would find out.
Happy New Year? Not so much. I think
in one minute I went through every emotion.
I was furious with the misdiagnosis.
I was angry that this doctor was not there
from the beginning for the misdiagnosis.
At the point of my new diagnosis, I realized
I needed to become a patient advocate-my
own advocate.
How could something so catastrophic
be misdiagnosed? As I frantically researched,
trying to understand not just
how I had been misdiagnosed, but how I
had this particular form of breast cancer,
I became acutely aware of the treatment
disparities within the healthcare system.
Had I not kept asking questions, insisting
on tests, telling my doctors what I
was experiencing, it's likely I would have
remained misdiagnosed, and therefore,
untreated for months or possibly longer.
Those months would have allowed the
cancer to grow and metastasize more. I
learned how to advocate for myself, and I
pressed my case. Fortunately, my new doctors
listened. Still, it was a tough journey.
I completed six months of chemotherapy.
I had a lumpectomy to remove the tumor
and had several lymph nodes removed.
That was followed by 33 rounds of radiation.
Being diagnosed during a pandemic
meant that I did it all by myself. I have
since learned a lot about resources that
weren't even available during my cancer
journey. I didn't have an oncology social
worker that met with me to ensure that I
had the tools I needed to be mentally and
financially sound. When I stopped getting
medications, I was told I was noncompliant.
No, I am not noncompliant. I don't
have enough money to put a roof over my
kid's heads and food in their bellies. So,
as a parent I put my health aside to make
sure that my kids were OK. I will say that a
gas voucher was provided to me, but what
if you can't drive? How do you get to appointments?
I am not one to not give praise
where praise is due, I had three nurses that
would see me almost four times a week,
and one would ask how I was. I would
say I was fine because no one has time for
complaints. She snatched my curtain and
said, " here you don't have to be strong,
you don't have to have it all together. " As
Black women we are told we must always
be strong. That is a misconception, it's OK
not to be OK! She gave me a safe space and
I am forever thankful.
I was ready to be finished with my
cancer journey. Unfortunately, I was not.
Something wasn't right. My doctor recommended
a PET scan that revealed bilateral
ovarian tumors. Hoping to stop the spread,
I endured more treatments but finally had
to have a total hysterectomy. Through it
all, the nagging question remained: Why
was I on this journey? I did the things I
was supposed to do. I was basically healthy,
I was not obese. I did my monthly breast
exams. Was there a genetic factor I knew
nothing about? I asked my mother and
grandmother, but there was no TNBC in
our family that they knew of, but maybe
in our ancestors?
The test was done, and when the results
of my BRAC 1 and BRCA2 gene tests were
negative, I was devastated. Medically, there
was no rhyme or reason for my cancer diagnosis.
I kept asking myself and others, if
there is no medical reason, then why am
I going through this? Finally, from the
depths of my despair, I prayed: " If there
is no known cause for my cancer, then
God, please give my diagnosis a purpose,
a reason! Make my life count! " And you
know what? He did! As I progressed from
diagnosis, to treatment, to recovery, I realized
the devastating effect TNBC has on
the African American female population.
This group of women is disproportionately
affected and consequently less likely to
receive the timely and appropriate care
and support that are so vital to positive
outcomes. This group also has a variety of
subsequent needs that go unspoken, and
therefore, unmet-mentally, physically,
financially, and socially.
I endured so many of those subsequent
needs. I found myself having to make
the hard decisions between medication
for myself or food for my children. Many
nights I cried in pain from not having the
medication that I needed. During active
treatment I lost my housing. I didn't have
the money to pay rent due to my inability
to work. All I had was a car. I quickly
found myself driving my two children
MY LIFE MATTERS
TNBC PATIENT VOICES ISSUE 2022
33
MY LIFE Matters: TNBC Patient Voices Issue 2022

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