Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 12

Self-Advocate
BUILDING TRUST
Why Your Oncologist
and Medical Team
Wants You to Advocate
BY AMY FINK
S
12
ix years ago, l learned the importance
of self advocacy after multiple doctors,
for years, misdiagnosed my metastatic
cancer. My persistence in frantically
trying to understand what was wrong and
in advocating for myself ended up saving
my life. Finally finding a doctor who was sympathetic to
what I was going through, and who did everything in his
power to help me, is the reason I am still alive today. I know
now to listen to my body first and foremost, and to really
push my doctors to work with me for an answer when I
think something isn't right. I have learned through all of my
treatment that it is essential to have a medical team that I can
trust in my corner. It's essential for all of us.
It all started with a lima bean. That was
the reference I used to explain the size of
the lump in my neck to a friend at school in
2013. I was 15 years old, a sophomore in high
school and a varsity swimmer. Getting sick
had never even been a thought in my mind.
I did not have health insurance growing up,
I came from a family of seven; four older siblings
and two parents working two jobs each
trying desperately to get by. The only time
we would see a doctor was for vaccinations
or broken bones, or if we were practically on
our death bed. A little lump in my neck and
ELEPHANTSANDTEA.COM
HODGKIN LYMPHOMA ISSUE 2021
some fatigue was not worth the price tag to
me at the time. Even so, yearly physicals were
required to swim on the high school team,
and luckily the grocery store down the road
from my parents' house offered a physical
with a " little clinic " doctor for only $35. It
still wasn't cheap, but it was a whole lot cheaper
than going to a hospital. I showed up with
my mom and let the doctor know about the
lump in my neck, just a couple inches below
my jaw. I also mentioned the other lumps I
had found behind my collarbone on the opposite
side. I explained to her that I had been
feeling a little under the weather lately, and
that my sinuses weren't feeling so hot. I left
that clinic with a diagnosis of a sinus infection
and a prescription for prednisone, but
all cleared to swim. Within about a week, my
sinus issue went away, but the lumps did not.
A whole year went by without any more
doctor visits, the lumps had grown to about
the size of a large green grape, and I had been
feeling increasingly worse every month. At
this point, I had several unexplained symptoms
that I could not figure out. I was tired
all the time, I felt out of it, almost as though
I was dreaming. I felt extremely out of breath
whenever I had to do basic exercise that I
was able to easily do the year before, such
as climbing the stairs at school and more.
Swim season came around yet again, and I
went to get my physical done at the clinic.
This time I told the doctor all the issues I had
been having, and about the lumps that kept
getting bigger, and how worried I was. He
told me not to worry, and that as a 16-yearold
girl, I was probably just dealing with new
hormones that I wasn't used to. I felt a little
unheard by him, as though he wasn't really
listening to what I said, but I told myself
that he was the doctor and obviously knew
more than I did. I left the appointment that
day with a diagnosis of exercise induced
asthma, a prescription for an inhaler, and
cleared to swim, yet again. I learned almost
immediately that the inhaler did not help my
breathing whatsoever, and I had a suspicion
that he had missed something.
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Elephants and Tea: Hodgkin Lymphoma Issue 2021

Table of Contents for the Digital Edition of Elephants and Tea: Hodgkin Lymphoma Issue 2021

Contents
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover1
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover2
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 1
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Contents
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 3
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 4
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Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover3
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