Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 14

Self-Advocate
BUILDING TRUST
" At the end of the day, you are the expert of your
own body, so do yourself a favor and be active
in your treatment-you always have a say in
what happens to your body. "
" I bet that you just have Mono (Infectious
Mononucleosis). I know teenage girls like
you and I know what you do in high school.
If you're going to be kissing lots of people,
you have to expect to get Mono at some
point. " I felt so shocked by this comment-I
was completely speechless. It felt so demeaning
and disrespectful to belittle what I was
going through to just having a simple virus.
I finally collected myself and explained to
her that that there was no way I had Mono,
seeing as how the person I had been dating
had Cystic fibrosis; they would have been
very sick if that were the case. She gave me a
look, and said, " sure. " She then left the room
to look over my scan results.
After a couple of minutes, she came back
into my room, looking solemn, and softly
said, " It's not Mono. " After this appointment,
I immediately went across the hall
to my next appointment at the Center for
Cancer and Blood Disorders. I spoke to an
oncologist there, and after doing an exam
on me, he concluded that I needed a biopsy
to determine what was going on with the
swollen lymph node in my neck. The day of
my surgery, the surgeon told me they would
remove the lymph node, and then test it while
I was still under. The last thing she said to
me before going under anesthesia was, " If
you wake up with a port, its cancer. If not,
it could still be cancer, but we won't know
for sure until we do some more tests. " The
second I woke up, I felt my chest and could
feel the little plastic port under my skin. I
had never been so relieved. I finally knew
what was wrong with me.
The day after surgery, I was told by one of
my oncologists that I had stage 4 Hodgkin's
lymphoma, a type of blood cancer, and that
I would have most likely died within six
months had I not gone in to see them due to
the sheer number of tumors in my lungs and
around my heart. He said that getting diag14
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HODGKIN
LYMPHOMA ISSUE 2021
nosed with Hodgkin's was somewhat good
news, since if you have to have cancer, this is
the one you would want. That it's the " good
cancer. " I wish I would have known just how
wrong he was. Almost six years later, I have
relapsed twice, developed an incurable bone
disease, I have had around 16 different types
of chemo, six weeks of radiation, a stem cell
transplant, a bone marrow transplant, Graft
Versus Host Disease, countless irreversible
side effects, countless near-death experiences,
and so on. I don't know where I am at
now remission-wise, and I won't for a while
still, but what matters most for now is that
I'm alive. I have learned through all this that
even though my doctors are experts about
the medical field, only I am an expert about
my own body. I am the only one who can feel
what I'm feeling inside, and if I had not been
adamant about my feelings, I would not be
here today. As cancer patients, our doctors
expect us to keep them updated on how we
are feeling. You know your body best, and
you will be able to tell, in most cases, when
something feels off. Listening to what your
body is telling you is unbelievably important.
I am happy to say that I trust my doctors one
hundred percent; I am very grateful to them
for working tirelessly to save my life, time
and time again. But it is always important
to remember that it's not one sided-they
count on me to let them know when I think
something feels off as well.
When I relapsed the second time, I knew
right away that something was wrong. I
noticed that I was sleeping all the time
again and had no energy whatsoever. I was
feeling short of breath, and I told my oncologist
that I knew my cancer had returned.
She was trying as hard as she could to stay
optimistic and said that we wouldn't know
for sure until my scans, urging me not to
worry about it. But I didn't need a scan to
tell me the answer; I already knew. I had
them reschedule my scans to a much earlier
date, and lo and behold, there were a couple
spots in my lungs, and a spot in my liver that
my cancer had not previously been. Once
I had the spot removed and tested, it was
confirmed that I had relapsed. That relapse
is when I learned to trust my instincts, and
to remember that I know my body best. I
realized the sheer importance of speaking
up when I'm concerned, and to really advocate
for myself within the medical world. I
thought of how I knew something was wrong
when I saw the doctors at the clinic, and how
they did not believe me when I said I had felt
like it was something serious. I wondered if
things would have gone differently had they
taken me seriously and found my cancer
at stage 1 or stage 2, instead of stage 4. I
decided to always stick up for myself from
then on and really push to be listened to. I
am not upset that my current medical team
had been skeptical of my " knowing " that my
cancer was back; I realize that is incredibly
hard to picture if you haven't experienced
it personally. The most important thing is
that they listened to me and ordered scans
immediately when I asked them to. That's
what matters most.
I am so lucky to have such a great relationship
with my medical team; we trust each
other completely and we help each other
out. They expect me to take an active role
in my treatment and to advocate for myself
and my needs, and they listen to me and help
in whatever ways they can. They gave me
options when I relapsed and let me choose
which treatment route I felt the best about;
they make me feel completely comfortable
with reaching out with any concerns I am
having and they recognize that I know when
something's off with my body. If you feel
like your medical team does not take your
concerns seriously, it is important to reach
out and help them understand that you know
when something isn't right with your body,
and that you need to work together to trust
and listen to one another. It is imperative to
always advocate for yourself, and to let your
team know if you are not feeling heard. At
the end of the day, you are the expert of your
own body, so do yourself a favor and be active
in your treatment-you always have a say in
what happens to your body. l
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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
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Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 4
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Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover3
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