MY LIFE Matters - Health Literacy - 5

SHARING MY STORY Powerful Patient Stories
lowing week I had a biopsy,
and the next day I received
the news. I would never forget
that day because I was
at work when I got the call
saying, " Can I talk to you for
a little bit? " The doctor told
me " The tumor is cancerous, "
then he said I will get a call
to schedule an appointment
with an oncologist. So, the
fol lowing week I met my
oncology team who laid out
my tumor size, grade, and
type, as well as my treatment
plan. My medical team was
great, they provided me with
information, documentation,
and resources. I also met
my nurse navigator who offered
additional support and
guidance. I took it upon myself
to find the best medical
team, best testing facilities
with the newest technology
and equipment, and the
best treatment plan that was
available at the time.
I was diagnosed with invasive
ductal carcinoma, grade
3 stage IIb/3, and my tumor
was ER/PR (estrogen receptor/progesterone
receptor)
positive HER2-negative. My
treatment consisted of eight
rounds of chemo follow by a
lumpectomy then 20 rounds
of radiation. My team wanted
to get a port put in and to
start my chemo immediately.
Instead, I had to wait for
insurance. A pattern that
was repeated time and time
again in my treatment journey.
My medical team had to
repeatedly get involved. We
to have my first mammogram and breast
ultrasound, which I was so nervous
about. I will say the mammogram is a
very uncomfortable experience because
your breast is squeezed in different positions.
After I had a breast ultrasound,
the doctor came in and said you have
a mass on your right side; at the time I
didn't know what that meant. She said
we must schedule a biopsy ASAP. The folall
spent a lot of time fighting and advocating
for medication approvals, necessary
diagnostic testing, and treatment
approvals time and time again. Doctors
should be focused on patient care, instead
they are pulled to fight for insurance
approvals. It is a system failure! A system
failure that is costing precious time
and impacting the lives and survival of
patients. There were repeated delays to
my treatment plan, and I was left waiting
time and time again for insurance approvals.
I would not take " no " or delays
as an answer, I advocate and took time to
do research on everything that is related
to my cancer, asking questions and presenting
information. I have learned that
I need to constantly advocate for myself
when dealing with insurance and to get
the approvals required to proceed with
my treatment plan.
I had to wait about two weeks for insurance
to approve everything because
of my age, insurance is a main factor why
everything takes so much time. The first
time I had my treatment I had to get it
in my arm, because the day I was supposed
to get a port, I told them I had tea
from Starbucks, and I guess they didn't
want to take chances. My first treatment
day was a lot, it lasted about four hours,
and the medicine felt like the middle of
my head was burning for three hours
straight. The next couple of weeks I lost
all my hair, which was down my back. I
have been going to the same stylist since
I was six years old, and as soon as this
happened, we cut off all my hair. It was
emotional, but it felt like something that
I just needed to commit to and get over
with. If Beyonce can wear a wig and rock
out to the world, I can too.
One of my medications, my nurse
explained, was prone to cause allergic
reactions. When I broke out in hives,
I received immediate support from my
medical team, and we shifted treatment.
Living in Chicago, I had access to incredible
medical teams to support my cancer
journey, as well as top diagnostic testing
facilities and leading medical experts.
So, after that, my treatment was paused
due to changes in medication. I switched
to a newer drug, but it was hard to get
approval from my insurance, once
again.... I finished my last chemo treatment
in August 2018, then had surgery
in October 2018 to remove my tumor.
My breast surgeon said they got all the
cancer out and now I must start radiation.
I started my radiation the day after
Christmas, I had to go 15 minutes each
day Monday through Friday. Because
Northwestern's daily parking was so
expensive, my co-workers volunteered
to take turns going with me just to wait
MY LIFE MATTERS
HEALTH LITERACY ISSUE | SUMMER 2023
5
MY LIFE Matters - Health Literacy

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