MY LIFE Matters - Advocacy in Action - 6

The Power of Advocacy ADVOCACY IN ACTION
much over Zoom, women
and organizat ions
from all over the country
were able to connect
like never before. I was
able to connect with
many people to obtain
educationa l resources,
learn about clinical
trials, and connect with
social support resources.
The pandemic was
also the catalyst for a
conversation with my
adult children to discuss
the stage of my cancer,
what that meant, and
everything I was doing
to increase my quantity
of life while learning to
maintain the best qualno
evidence of active disease. At this
point, I was done with chemotherapy
and would continue with targeted therapies.
A few months later my hair was
growing back, and I had a new normal.
Everything seemed to be going well. I
connected with support services which
lead to a metastatic breast cancer conference
where there were at least 100
or more women like me with stage IV
cancer. I learned so much in one day.
That conference would be my first exposure
to patient advocacy.
As I said, things seemed to be going
well until they weren't. Within a matter
of a few weeks, I found out my oncologist
was leaving the practice, my cancer
was active, and the world shut down due
to a pandemic. My oncologist helped me
find a new oncologist about 20 minutes
away from the predominantly African
American community I lived in. This
would be my first introduction to disparities
in care. I quickly noticed the
higher quality facilities, quantity of
staff, and an overall better atmosphere.
On a positive note, my progression
wasn't life threatening and I moved on
to my second line of treatment.
As the world shut down due to the
pandemic, there seemed to be a shift in
the breast cancer community, particularly
for Women of Color, young women,
and women with metastatic disease.
With the world being forced to do so
6
MY LIFE MATTERS
ADVOCACY IN ACTION | FALL 2023
ity of life for myself and our family.
After a few months of new treatment
my scans showed a positive result. It
seemed like things were going good
aside from the pandemic. Working
from home, school zoom, and worrying
about COVID-19 was stressful, but I
was alive. Once again things were going
well, until they weren't. After only eight
months on my second line of treatment,
my scans showed a progression. Its imperative
to have a trusting relationship
with your oncologist. We discussed the
progression and treatment options. The
plan we came up with
was to try radiation to
preserve the amount
of time on my current
t reatment reg imen.
Ironically, I was just
coming to a trusting
level of comfort with
my oncologist and her
staff. It was kind of
hard to get to know
people wearing masks.
I was connected to a
radiation oncologist
who I trusted immediately
regardless of
masking, because she
had posit ive energy.
It would be months
before we would know
if six radiation treatments
would be effective against the
progression.
It would be a few months before I
could get scans to see if the radiation
was effective, or it was not. Now it was
time to step out on faith and trust God
and my oncologist. It was time for a
mastectomy. There has not been a lot
of research to support the effectiveness
of a mastectomy extending the life
of someone diagnosed with de novo
stage IV metastatic breast cancer. The
thought process behind the decision
was to preserve the line of treatment I
was currently on since the reoccurrence
was in the original breast where the
cancer started. After the surgery it was
determined I was now triple-positive.
What?! That meant additional medicines
daily and monthly. Unfortunately,
due to a progression five months later,
the line of treatment we were trying
to preserve was no more. Through research
and trying to learn as much as I
could, I knew my next line of treatment.
I knew about the side effects. It was new
on the market, and I was ready for it.
That was October 2021, and it is still
doing its job.
Since November 2021, I went through
a lot of transitions. I started my third
line of treatment. I took care of my
Grandmother through a short cancer illness
before she passed away, along with
her final arrangements and organizing
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MY LIFE Matters - Advocacy in Action

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