Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 4

Self-Advocate
BE YOUR OWN ADVOCATE
Struggling to
Advocate for
Mental Health
Support
BY MALLORY CASPERSON
E
arlier this year, I was diagnosed with
a relapse of Hodgkin's lymphoma.
I was months away from celebrating
10 years of being cancer free.
In that time, even though I work in
young adult cancer survivorship support, the
specifics of my own diagnosis and treatment
had sort of faded to the back of my mind. It felt
very much like an experience from another life,
one that still affected the here and now, but also
one where the details were foggy and no longer
easy to recall. Then I felt the lump on my neck.
It disturbed the normally soft area where the
two sides of my collarbone meet in the center, a
hard and immobile mass. I saw my primary care
physician who immediately took my worry very
seriously (if she had not, I would have promptly
switched providers) and sent me for a same-day
ultrasound. As I lay on the ultrasound table, I
felt along my collarbone and found two more
suspicious feeling masses. My heart sank. I felt
simultaneously grateful to be here on the ultrasound
exam table, but also very taken aback that
I had missed these other two lumps.
When my husband and I started telling
our parents that I was having some lymph
nodes investigated, my mother-in-law quickly
dismissed the concerns, citing colds that the
whole house was still getting over. I totally
understood her knee-jerk reaction. It's easier
to think something isn't serious than to worry
that it is. Plus, she wasn't wrong. An upper
respiratory infection (and so many other
things) can definitely cause a lymph node
to swell. Advocating for yourself can come
in all shapes and sizes though, and I knew
that I needed something more definitive for
these rogue lymph nodes than my own selfassurance
that I had a cold. The investigation
continued. After the ultrasound, I was referred
to an ear, nose and throat doctor who also
took everything very seriously and ordered
a needle biopsy. Ten years ago, my mother, a
clinical nurse specialist working in oncology,
told me to not let someone do a needle biopsy
on the lymph nodes in my neck. You better
believe those words of caution were in my ear
when the physician suggested a needle biopsy
instead of a full excisional one where they
would remove the entire lymph node. This
time, advocating for myself involved a lot of
questions about the safety of a needle biopsy,
the likelihood it would render a definitive
4
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Elephants and Tea: Hodgkin Lymphoma Issue 2021

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