Elephants and Tea - December 2019 - 30

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Photo courtesy of First Descents

Dear Cancer...

Dear Cancer,
I was diagnosed with metastatic neuroendocrine cancer 1,679 days
ago. Six weeks before starting a job in another country, five weeks
before my 30th birthday, three weeks before completing my masters
degree, and three days before surgery to remove said cancer. That was
the day they told me that the "spot" of cancer was actually not A spot,
but rather SPOTS, and that they would not be able to get it all. Those
first few weeks following surgery were a haze, and I remember almost
nothing from my early appointments, except a sense of frustration
and feeling totally overwhelmed by this new reality. How could I have
incurable cancer? At 29?
The road to my diagnosis was long and winding. Neuroendocrine
(Net) cancer is uncommon and can originate almost anywhere
in the body. Mine started in my pancreas and had metastasized
to my liver by the time it was found. Net cancer can produce an
array of hormones, which cause it to masquerade as a number of
other conditions. I knew that I was sick for years, but I didn't know
what was wrong. I pursued a diagnosis, but was dismissed time
and time again over the course of 15 years. Although I struggled
with fatigue and had issues with focus, I continued to pursue my
undergraduate and graduate degrees.
By the time my diagnosis came, I thought my organizational
skills were top-notch. I spent the better part of a decade taking
college courses, I had systems for everything and was particularly

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DECEMBER 2019

adept at note-taking. My roommates marveled over my organizational prowess and my notes were the basis of the study guide we
used to prepare for finals. However, I quickly learned that I was
woefully unprepared for cancer.
In the beginning, I would go to my appointments thinking, "I
got this" and leave knowing that I had taken meticulous notes.
After all, I had done it for years as I pursued my degrees - at that
point, I could listen, take notes, and process enough to ask any
questions that I had in class. If not, I could always shoot over an
email and get a response quickly. Why would it be any different
in my doctors appointments? I would be sitting one-on-one with
the doctor, and I could always follow up with questions, right?
But it turned out that my notes from my doctors appointments
were pretty useless. I'd have fragments of sentences like "side effects: skin !!!! Expect diarrhea, forever? :(" I tried taking notes on
my phone, my tablet and in a notebook. I always missed something
critical, and it proved harder than expected to get in touch with
my medical team between appointments to fill in the gaps. And
seriously, what WAS going to happen to my skin?
Since my diagnosis, I've tried every system imaginable. Each
one, including the bring-a-friend option, has fallen short. If I did
bring a friend or family member, they often got the names of drugs
or procedures wrong in their notes because they were not familiar
with them. Who could blame them? When you are new to cancer,
no one is familiar with the terminology. But when you are trying

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Elephants and Tea - December 2019

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