Elephants and Tea - September 2021 - 31

FROM PATIENT TO CAREGIVER Caregiving
H
ow many times have you been
asked for your date of birth,
like it's a code to another level,
a password at a locked door?
Doctors, nurses, surgeons,
pharmacists need this information before they
can do their job, which is to take care of you.
It confirms to them that you are who you say
you are, you are that Sarah. A paper bracelet gets
scanned, a driver's license may be handed over.
You tell your name and these numbers, and the
process can continue. They smile and give you
your prescription for Ativan because it relaxes
you, thank God; they smile and send you back
to your oncologist's office for the next of so many
visits; they smile and tell you your weight, which
has soared post-chemotherapy; they smile and
ask you what procedure, ranging from banal to
terrifying, you are there for that day. My birthday
has been a PIN in countless transactions.
It was in a moment of panic the first time I
realized I was being asked for this code over
and over again: I was about to be opened up
for lysis of adhesions, surgery to correct a
small bowel obstruction. One day before I had
collapsed while spectator-side at the Boston
Marathon; four weeks before I had had an appendectomy
after experiencing stomach pain
that had been increasing over months. For 24
hours I didn't know what was wrong with me.
I had been intubated with a nasogastric tube.
My pain was a delirious eight, maybe even nine
if I let myself believe it. With all the drugs,
deep down my working brain was still awake.
I wondered what I had done wrong. My view
changed from looking at the lump of my toes
under a hospital-issued blanket while trying
to keep my head from bobbing to the faces of
kind EMTs bringing me to an ambulance, to
the blank operating room, walls disappearing
from my vision by that point. I was asked my
name and my date of birth, and I gasped it
out. Here, it was being pulled out of me, and I
thought, please, take it. Just help me.
Four months later I woke in the middle of
the night with a pain on my left side, opposite
the phantom appendix, where my tumor
had been living. Four months after
that I was diagnosed with stage III
colon cancer at age 34. So many
more appointments followed with
people who would ask me my date
of birth, that key that would tell
who I was, this woman with cancer.
I began to appreciate it when I
was asked for my code. It was a piece
of myself that I could share, unique to me and
more than just why I was in that recovery room
or at that check-in desk. When I say it, I feel
myself opening up just a little bit, letting air
into the dark room I often found myself in
and still do when it's time for bloodwork or
another colonoscopy.
Even so, I found myself split in two. I wanted
to disappear, I wanted connection. I wanted
to tell the world what was happening to me,
I wanted silence. I wanted to ignore what I
needed, but I also wanted someone to ask me
something personal, even something that every
single one of us has, that we might even share
the exact same three numbers.
Before I got sick, I had never really been sick.
I had the flu in 9th grade; my parents let me
sleep in their bed during the day, even though
I was feverish and sweaty. While living in Madrid
when I was 26, I came down with what I
think was norovirus; my Spanish friends told
me to eat white rice and cooked ham, that it
would make me feel better, but they brought
me boxes of chicken broth when I asked. Me
cuidaban.
In a way, isn't it all our jobs, to take care of
each other?
My father was diagnosed with lung cancer
six months after I finished chemo. He had been
coughing for months, couldn't stop, and we
knew he was trying to suppress it, minimize
what was happening, what we could hear. I
lived 300 miles and four states away. I was in
my first year post-cancer, still in shock about
what happened, almost embarrassed for having
been sick, needy. I didn't know how to talk
about my own cancer, how do I talk to someone
else about theirs? Even my father.
I don't know what was more difficult, being
sick or watching someone else be sick. It's hard
enough to know what you need, but it seemed
even more impossible to be sure of what someone
else needed. I am healthy now, six years
since my last infusion. The number of scans has
been reduced, the years between colonoscopies
has grown from two to three. But I think about
that time often, when I was sick and when my
father was sick, about what I could have done
differently. If you are a caregiver, I recognize
how difficult your job is.
To be honest, I don't remember if we commiserated
about side effects. I remember he
told me he was scared, and that was hard to
hear. That's exactly what I should have done,
though: listen. Ask, and listen. Ask what he did
that day, something mundane; let the person
tell you something about them, how they are
feeling or what they are thinking or whatever
they want. Let them cough, let them be scared.
One year after my dad passed away, in
November 2017, I read a book called " There
is No Good Card for This: What to Say and
Do When Life is Scary, Awful, and Unfair to
People You Love " by Kelsey Crowe and Emily
McDowell. Over and over, they suggest asking
the simplest, most obvious question: " How are
you doing? " Even though I've had cancer, it
doesn't mean I know how another person who
has cancer is feeling. So ask. Did I ask? I hope
I did, and I wish I could remember. A quote
from the book that stood out to me was: " The
more we can appreciate the small gifts that we
receive, the more we can appreciate the small
gifts that we offer. " Did I appreciate every " how
are you? " when I was sick? The flowers from
an employer, the email from a neighbor who
had long moved away, the texts from a friend
with a simple heart? I was scared to, because
acknowledging their care made it real. But
maybe if I had, I would have known what to
do when he was sick. I know it's never too late
to start appreciating what you're given.
My dad had been a CPA, and on nights
during tax season my mother would shush us,
remind us to be quiet outside his office where
he would be working late, mired in numbers.
I still hear the clicking of the fat keys of the
calculator and the mechanical printing on the
roll of paper hung off the back.
1/25/44.
" I don't know what was more difficult, being
sick or watching someone else be sick. It's
hard enough to know what you need, but it
seemed even more impossible to be sure of
what someone else needed. "
ELEPHANTSANDTEA.COM
SEPTEMBER 2021
31
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Elephants and Tea - September 2021

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