I had to go
see Dr. Silverman, the one who diagnosed me with the disease. We went to his office near the University and
we met in his office. I sat there with
my mom and dad, and he explained the options I had for treatment. I could wait until I was a little older to
have my colectomy, but not too old as the polyps already were in the process of
becoming cancer one day. Or, I could do
it sooner, like over the summer. It was
March or April now. My mom thought I
should decide. I had heard most of what
Dr. Silverman had said and he looked at me and asked me what I thought. I thought I didn’t want to die. I, like pretty much everyone, was afraid to
die and the thought of having something that was waiting in my body to kill me
one day was a terrible thing and I wanted it gone. I didn’t really understand exactly what it
involved, other than it was abdominal surgery.
There are a lot of details to that which one can never know. It’s probably better this way.
So I told
Dr. Silverman I wanted to get it over with.
My parents scheduled the evisceration for June, about three days after
school ended for the year. What a total
downer. My summer was being taken from
me, all because of this ridiculous disease.
Losing my summer was only the first of many things FAP would cheat me
out of. As soon as school ended, I had
to begin the colon cleansing preparation again.
Yes, again, I had to clean my bowels out and not eat for three days. Crap is really dirty and full of
bacteria. If they cut you open to remove
your large intestine and there is poop inside your bowels, it will spread all
over your abdominal cavity, infect you with massive bacteria, and in a matter
of hours, your body would become so infected, you most likely would die or suffer
permanent complications if you survived.
So, I had to clean my tube of crap out.
Same thing – clear liquids, lots of enemas, etc. But, I had to be admitted a day before my
surgery so the medical staff could clean me out sufficiently and they wanted to
pump me full of unnecessary antibiotics pre-surgery. They don’t do this anymore. Modern medicine and rational thinking has
allowed doctors to discover that healthy people don’t need extra drugs in their
body. Their immune systems work fine if
you leave it alone and let it do its thing.
My parents
brought me to the hospital that morning to check in. My stomach was growling and I was starving,
but my consolation prize was beef broth.
A clerk took us up to my room. In
1984, The University of Colorado Hospital had a pediatrics floor and luckily, a
surgeon named Dr. Lilly was one of the only doctors in the West who was doing
ileoanal anatamosis surgeries on children.
I’ll explain what that is later.
The Children’s wing at the University was as ugly as any other 1980’s
hospital floor. Back then, Children’s
hospitals were not all tricked out with crazy colors and fun things to see and
touch for the run of the mill ADHD kid.
They weren’t trying to make you feel comfortable and safe and at
home. They just got down to business and
did what they did best - helping kids to heal and survive. They didn’t sugar coat crap back then. They gave it to you straight. Things are different now. They give you your drugs with a smile on
their face and a gift from the prize box.
Yay, you’re so brave for getting a shot!
I walked
down this desolate hall of a hell hole.
Not only was it dated, drab, and ugly, but it just felt devoid of
anything remotely happy. A nurse greeted
us at the main desk of the Children’s post-surgical floor. She was cheerful and kind. All the nurses there were. They were the only thing pleasant in such an
ugly place. I was taken to my room. It was a shared room, but for a few days, I
was the only one in the room. The
bathroom was a shared bathroom with the hospital room next door. I soon met the girl in the hospital room next
door. She was frequent flyer. She was born with a congenital disease called
Biliary Atresia. It’s a defect where the
bile ducts leading from your liver are narrowed. This narrowing causes the bile to build up in
the liver, which eventually destroys the liver.
The girl next door was about five and her liver was dying. She was on the transplant list. She had to be admitted to treat some of her
symptoms from the bile build up. She
left before I did, but I’m sure she returned.
I don’t know what happened to her, if she was ever lucky enough to receive
a transplant liver. Chances are, back
then, she probably died waiting.
I was much
more blessed and lucky then the patient next door. I wasn’t going to die, but I sure felt like
it was the end of the world. I received an
IV first. I had one when I had my
colonoscopy. It was no big deal. Of course I didn’t cry. I was not a baby I thought. The nurse gave me the orange antibiotic pill
to get some unnecessary antibiotics in my system for the surgery the next
day. It was lunch time, but no lunch for
me, unless you are counting broth as lunch.
I passed on the broth. A few
hours later, I became super nauseous and threw up a bunch of nasty, foamy,
orange bile. It looked like the pill I
took and it tasted bitter as hell.
Nobody seemed to think that orange pill was the culprit. At “dinner” time, I had to take another
orange pill. Again, a few hours later, I
threw up again, even nastier and foamier orange bile. Hello dumb asses I thought, “This medicine is
evil and it’s making me sick.” I told
the nurse the pill was making me vomit.
She wasn’t sure. Seriously, was
she sure she went to nursing school, had a brain, and a pulse? My mom got involved. She told them not to give me the pill
anymore. I think they decided to listen
to my mom because if there’s one thing you don’t do, that’s mess with a mom
when their child’s wellbeing is at stake.
It was
starting to get late. The day nurse had
left. The night shift nurses were
there. My mom and dad needed to go
home. Really? I never even thought about that little
detail. I hadn’t even considered
it. I had to stay in this shit hole
alone? I apparently had a really devastating
look on my face because my mom said “You’re ok with me going home right?” She said “I can stay if you want. Do you want me to stay.” I realized at that moment that my mom didn’t
want to stay. The fact that she even
considered leaving me there, meant that she hadn’t considered she should
stay. I think she was quite surprised –
I’m not sure what planet she was on – that I was so shocked to stay there
alone. I told her to go home with
Dad. I wanted to be brave. I didn’t want to need her. It had hurt me that she actually left it up
to me to ask her to stay. I was eight
years old. I should have had to ask or
make the decision. It should have just
been a given. But it wasn’t.
That night I
couldn’t sleep. I was hungry and nervous
and scared for the next day. The night
nurse came to check on me a few times.
Around 2am, she saw I wasn’t sleeping so she told me to come with
her. She saw I was sad and scared and
lonely, so she took me with her to do her rounds checking on babies and
toddlers who needed dressing changes, medications, and other care. I helped her change a baby’s diaper who was
on oxygen and had some kind of respiratory disease. I helped her take vitals on other
patients. She really made me feel
special and safe. She kept my mind off
of things and I felt helpful. I realized
how much sicker everyone else was. It
made me think strangely yet realistically how lucky I was to be in this
situation and not the little girl next door with liver failure waiting to
either live or die. I thought I should
stop feeling sorry for myself that I was without my mom and awaiting surgery
for a stupid disease. I could be dying,
but I wasn’t. I hadn’t had surgery yet,
I would in a few hours, but I was already changing who I was. I was already different from the day
before. I had learned something about
the harsh reality of life. Even at 8, it’s
up to you to make the best of your life.
Nobody’s ever going to do that for you.
No comments:
Post a Comment