Elephants and Tea - One Herd - 25

Our Voices
I took his suggestion and proceeded to
freak out-partially because " AHHHHHHHHHHHH!
Surprise bone marrow
biopsy! " and partially because I like to
know ahead of time if something big like
that is going to happen. I imagine any patient
would, because nobody wants to have
" Oh yeah, we're gonna drill into your hip
and take some bone marrow out " sprung
on them at what seems like the end of the
appointment, especially when a doctor
refuses to give anything for their nerves.
It took me around 30 minutes to calm
down so he could do the bone marrow biopsy.
It took me around a week to recover,
which was just in time to go back for the
follow-up and get the diagnosis.
Let me paint a picture: You're taken
into an exam room two hours after your
scheduled appointment time, you're in the
exam room for an hour, and then Dr. O
walks in. The first words out of his mouth?
" So, it's rarer than we thought! "
My response? I laughed. Why? My
thought process was something along
the lines of, " Of course I get the rarest
of the rare. I get both types of the 1-infive-million
cancer! At least I'm the most
prepared for it . . . well, as prepared as you
can be for cancer. "
I don't remember exactly how he responded
to my laughter, but I remember
thinking, " Huh, is that really the way a
doctor should break the news of cancer
to a patient? "
I started treatment 10 days later and I
immediately began experiencing side effects.
When I told Dr. O about them, he
would say things like, " Well, if you can't
handle this medicine, how are you going
to handle other medications in the future?
You just need to learn to deal with it! "
Every time I would try to discuss it with
him, he would brush it off, insisting the
medication was " nothing. "
At one point, I was losing weight, and
my weight had dropped low enough that
Dr. O was considering placing me on an
appetite-inducing medication. While
discussing my weight loss with him, he
mentioned going to the gym.
He said, " Cody, go to the gym and pump
some iron! That's a great way to gain
weight-I do it! I'm getting some muscles! "
(while patting his not-so-slim stomach).
I asked if seeing an occupational therapist
(OT) for exercises might be better,
given my medical history, but he
responded, " Just go to the gym and lift
some weights! Lift some five- or 10-pound
weights-those are light! "
I reminded him of my medical history
by telling him, " But I can only lift five
pounds for maybe 10 seconds on a good
day. Is it even safe for me to go to the gym
while my absolute neutrophils are 200? "
He replied with something like, " I don't
believe that you can't lift that much, now
you need to go to the gym and exercise!
You won't be able to do any other treatments
if you can't even lift weights! Of
course it's safe for you to go to the gym-
exercise is healthy! "
After that, I realized it would be impossible
for me to get through to him, so
I dropped the subject knowing that he
would not listen to me or my concerns.
He was viewing me from the lens of a
neurotypical doctor who had a " difficult "
patient-not a neurotypical physician
with a neurodiverse patient. He could just
as easily have taken a minute to sit and
talk with me and explain why he wanted
me to go to a gym instead of an OT. Or
he could've referred me to a nutritionist.
Over time, I began to respond to treatment.
I had a partial response, which everyone
liked. I had nausea and vomiting
the whole time, and I would bring it up
to Dr. O at every visit. Most of the time,
he dismissed my side effects. Once he
prescribed Compazine, and after taking
it and feeling strange, I read it wasn't recommended
for patients with a history of
seizures. When I called his office about
it, his nurse screamed at me, telling me I
" should know " I couldn't take it. When I
told Dr. O, he brushed it off.
At my next visit, which was one of
the last times I saw Dr. O, I told him
that my vomiting had increased to 8-15
times within a 48-hour period-it was
unbearable. All I wanted was to manage
my treatment without being out of commission
for two days every week. Since
Dr. O wouldn't help me, I turned to one
of my coping mechanisms: research. I
began looking into reasons for persistent
vomiting despite being on antiemetics,
searching terms like " autism and chemotherapy
nausea. " That's when I discovered
something called anticipatory anxiety and
anticipatory nausea.
Routines help keep me level but in this
case, it seemed like my routines were
betraying me. When I explained my concerns
to Dr. O, he dismissed them, telling
me to " just do it, " " stop being nervous, "
and suggested I see a psychiatrist. Dr. O
didn't listen to me when I told him that
because of my autism, I needed to follow
the routine in order to be able to even
take the medications. During the visit, I
mentioned that I suspected some of the
vomiting and nausea were anticipatory,
but he simply repeated that I needed to
" just do it, " advising me to " stop being
nervous " and have a psychiatrist give me
medication. I don't think the average physician
would tell a patient with depression
to just " think happy thoughts " or " get over
it. " So why is there this dichotomy when
it comes to autism?
After that visit, I decided not to see
Dr. O anymore. He didn't respect me or
try to understand me, despite seeing him
monthly for over a year. Fortunately, I
soon had the opportunity to switch managing
oncologists, and I seized it. I began
seeing Dr. T, who respected me from the
start. During my first, he actually listened
to everything I had to say. He understood
that the side effects were intolerable, despite
my responding to the medication. He
asked me one thing: to give the treatment
three months under his management to
see if anything improved. I agreed, but after
three months, the side effects remained
the same. Dr. T understood and agreed I
had to stop the medication, even though
it had been working. He took the time to
get to know me and how I function. He
listened. He truly listened. l
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Elephants and Tea - One Herd

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