MY LIFE Matters: TNBC Patient Voices Issue 2022 - 24

Cover Story TNBC
fight cancer from a holistic standpoint.
We should address all aspects of health,
especially mental health. I remember
having many appointments around the
time of my diagnosis, but none of them
were with a therapist or psychiatrist.
The primary focus was on my physical
health, but fighting this disease also
requires great mental and emotional
health and stamina. After being diagnosed
with metastatic disease in May
2020, during the peak of COVID-19,
I began seeing a therapist regularly to
help me cope with living with a terminal
illness, my body changes, signs of
depression, parenting with a terminal
illness, and to manage the day-to-day
stresses of life. I also began to seek out
advocacy opportunities to become more
knowledgeable about breast cancer,
treatment options/plans, and trends in
the Black, Brown, and people of color
(BIPOC) communities.
Learning more about metastatic breast
cancer has increased my confidence
and ability to advocate for myself and
others. After each appointment, I would
research terms and statements that I
did not know or fully understand to be
knowledgeable at the next appointment.
In the past, patients believed that what
the doctor says is the end all be all-I
do not believe that the word of one doctor
is the final word. Do not be fooled;
second, third, and even fourth opinions
are critical when fighting for your life. It
is always good to get a second opinion;
your oncologist should not be offended
if you obtain a second opinion, they
should encourage it. If the information
does not match, you can get another
viewpoint to determine your next steps.
Throughout this process, it is important
to keep the lines of communication open
between you and your oncology team.
One side effect of chemotherapy that
is often not discussed is thinking and
memory loss, also known as " chemo
brain. " Written off as lazy, ignorant,
or lack of care-there is nothing more
embarrassing than having brain fog
mid-sentence. We have all been there
before and will probably have more instances
of confusion or the inability to
make decisions in the future. To combat
chemo brain, I take a lot of notes,
have calendars in most rooms, and use
voice memo apps. Some oncologists
do not like to be recorded, so it is imperative
that you ask these questions
at the beginning of the relationship to
ensure that everyone is on the same
page. During my initial meetings with
oncologists that I was interested in,
I let them know in advance that the
conversation would be recorded due
to chemo brain, and it did not cause
any problems. They understood where
I was coming from and said more patients
should consider recording their
appointments to go along with their
after-visit summary.
Building a relationship with your oncologist
and medical staff is so critical.
You should select an oncologist you
can trust and can have hard conversations
with, in a trauma-informed way.
Our oncologists essentially become a
part of our family. They are helping to
lead the fight against the cancer. They
are the liaison who connects you to
other patients, medical supports, and
organizations when needed. I will be
honest and transparent and share that
I have interviewed oncologists before to
see if we would be a good fit for each
other. I have even had to terminate my
relationship with multiple oncologists
and a medical center. I do not take my
diagnosis and treatment lightly, and I
do not think my medical team should
either. This is one of the most important
battles of my life. I need to make sure
that " my people " are my people.
On the day of my fourth infusion, I
walked into my treatment center and
provided my last name and date of birth
as I normally would for verification
purposes. The secretary said, " you
are already signed in, you can have a
seat in the waiting area. " I informed
her that I had just arrived and there
was no way I could be signed in. After
management intervened, I learned
another person with the same name was
marked as me and not herself. That was
the last treatment I would have at that
medical center. I transferred my care
to another medical center immediately.
I had two weeks to research and find
an oncologist I could connect to and
trust. I obtained a referral to a woman
of color oncologist with over 20 years
of experience who had a positive web
presence. Upon meeting her, she had
a good bedside manner and slowed
down to fully explain things to me and
my loved ones. Our relationship was
growing in the right direction until
I received an after-visit summary for
someone else without an apology. The
oncologist had no desire to speak about
what happened, and I never received
the correct information from her or her
staff. It was in that moment I knew we
could not move forward.
" One side effect of chemotherapy that is often not discussed is thinking and
memory loss, also known as " chemo brain. " Written off as lazy, ignorant, or lack
of care-there is nothing more embarrassing than having brain fog mid-sentence. "
Learn more about brain fog on page 10.
24
MY LIFE MATTERS
TNBC PATIENT VOICES ISSUE 2022

MY LIFE Matters: TNBC Patient Voices Issue 2022

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

Contents
MY LIFE Matters: TNBC Patient Voices Issue 2022 - Cover1
MY LIFE Matters: TNBC Patient Voices Issue 2022 - Cover2
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 1
MY LIFE Matters: TNBC Patient Voices Issue 2022 - Contents
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 3
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 4
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 5
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 6
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 7
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 8
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 9
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 10
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 11
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 12
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 13
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 14
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 15
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 16
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 17
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 18
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 19
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 20
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 21
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 22
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MY LIFE Matters: TNBC Patient Voices Issue 2022 - 24
MY LIFE Matters: TNBC Patient Voices Issue 2022 - 25
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MY LIFE Matters: TNBC Patient Voices Issue 2022 - 27
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MY LIFE Matters: TNBC Patient Voices Issue 2022 - Cover3
MY LIFE Matters: TNBC Patient Voices Issue 2022 - Cover4
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