Monday, June 27, 2011

The Downward Surgical Spiral

In my autobiography with the working title: "The Messenger Unveiled",
I wrote on surgeries:
"You can hate hospitals, needles, that smell of alcohol that follows
you everywhere,  the  taste of surgery that invades your mouth and
crawls right down inside of you. It becomes a part of you just like
your breath coming in and out. So, you can despise that, you can push
and fight it off, or you can sink and give into it like I did. You
can learn to accept it for what it is, and see it as a part of you, of
your life, which is what I did. I see it as part of me. I know it as
well as I know the house I live in. I know it as well as I know the
smell of someone who's part of my inner circle. I could draw outlines
for you, make you feel it too, taste it, touch it, hear and smell it.
I could bring you so up close and personal with it, you'd either never
want to experience it again, or you'd become fascinated with it.
Either way, once I lead you there, you'd know that you'd been there,
and you'd never forget it. Never forget the fear and the pain."
Having written that, it's still hard for me to "take you there".
Funny, I've only done this 66 times, but the truth is, it NEVER gets
any easier.
Try these flashbacks on for size. . .
I'm a tiny girl, maybe 3, maybe 4 and Daddy is taking me for a ride on
the little train they have at Motts Children's Hospital in Ann Arbor.
We're riding along and I'm happy, but my tummy isn't. I know what's
coming. I know it's going to hurt. Most people go into the hospital
with a problem and come out feeling better. I go in feeling fine and
come out of surgery feeling terrible! How exactly does this work?
So we get to our destination, the pre-op room. Finally, and their
giving me nasty medicine to drink. It's the sleepy medicine. It's
supposed to relax me. Odd, I don't feel relaxed. Tricked maybe, but
not relaxed.
They take me into the operating room and I'm still awake. Daddy comes
in with the mask and the booty's on, that whole keeping everything
sterile and antiseptic and all! Yuck!
They put the mask with the ether in it on my face. I don't remember a
warning, I don't remember the discussion. One minute Daddy's with me,
the next this evil smelling mask is over my face and their telling me
to breathe deep.
I'm breathing deep alright, but I'm screaming: "Daddy!!! Daddy!!! Stay
with me!! Don't leave me!!"
I feel like I sound covered up, muffled from under the mask. I feel
trapped, stuck, bound!!!
And then I wake up.
And this I know from many surgeries. I wake up and I taste the
breathing tube. I wake up with sores where it rested in the corner of
my mouth, and with the taste of surgical instruments and sutures and
whatever else they saw fit to pour over me, on me and in my mouth as I
"slept" if you can call it that.
Oh, and there's blood, the taste of blood. Apparently your mouth and
face bleed a lot. Who knew?
Another surgery, another time. . . The nurse tells me: "We have
flavored masks!! Which flavor would you like honey?" I want to scream!
This lady, with her happy friendly manner, her glee over flavored
masks!! Who the fuck does she think she is??? Flavored masks?
Yippee!!! I have too much control now!! I just can't take it! Are you
going to let me pick what time the surgery is scheduled for to? Can
you let me pick the nurses that will attend me? Can they all be as
friendly and bubbly as you???? YAY!!!! I'm jumping over the fucking
moon with excitement! And my inner bitch shrieks: "Bitch!!!!!!!"
I hate this nurse, hate her friendliness. It feels fake, forced,
false! I'm going under the knife here! I'm getting sliced and diced
and dissected and she's throwing a motherfucking parade????
Of course, I'm too young and too polite to say all this, so it's all
inner dialogue, dialogue that I can only spew forth now, as an adult,
with a full grasp on what I was feeling and thinking back then, and
the ability to articulate it now.
Another time, now we're at Bowman Gray Children's Hospital *which is
now Wake Forest Baptist Medical Center* at Wake Forest University
*which now is comprised under the Baptist Medical Center title* in
North Carolina.
I'm 9 if memory serves me and it's one of the first times of having
surgery in a different hospital, but with the same doctor. He moved
from Motts to Bowman.
Anyway, the anesthesiologist is friendly in the waiting room. He's
telling me what his job is and what he's going to do to put me to
sleep. Fair enough, but there's more. . . MUCH more!
I make it all the way to the operating room without incident. Then,
then comes the time for the mask. I was still young enough that they
were doing mask before I.V.
He asks me how many siblings I have and I tell him. He asks where I
live, and perhaps another question to shoot the breeze. But then he's
ready and I'm not.
They get me to lie back on the bed and the mask comes, but I fight it
and fight it hard! I fly up and grab him in a hug! I cling! I cry! He
tries to get me to lie back down, but I won't.
So the nurses push me down! They push me down and hold me down!! It
feels like there' are a million hands holding me down! And then I can't
breathe. The mask is on me, I'm hysterical and then I'm waking up.
And that ladies and gentlemen, is how you break a bitch! No matter
what your goal is, that's how you break someone in.
I felt violated and abused, but enough about me. Let's discuss the
weather instead, shall we?
Who cares how I feel? Who the fuck cares!!!!!!!!!!
All the times since then?? I come into the pre-op room laughing,
happy, smiling. I'm thrilled!! I make the nurses and doctors laugh in
the operating room. I lay there in my cold steel prison, on my bed
with my warm blanket and as they pat my hands and tell me to pump my
fists so they can find a good vein, I tell them about my favorite
bands. I tell them about my family and my kitties and doggies. I feel
the cold alcohol swab; feel the icy gel of the leads to the heart
monitor being placed on me. The blood pressure cuff grows really tight
and I can feel my pulse all the way through my arm and I smile! We're
all happy! I'm going to club med! YAY!!! I say: "Let me know when you're
going to stick me!" And to them I sound normal, happy. To myself I
sound high-pitched. My stomach clenches and I tell myself for the
thousandth time that they'll find a vein and everything will be
fabulously fine! My brain screams at my veins telling them this is NOT
the time to role over and play dead, and that if they do, they're going
to receive a severe beating as soon as I get the time and energy back
to do it!
But I don't cry anymore. I tell them what medications I'm allergic to.
Augmenten, Keflex, Tylenol 3 and Diflucan. I repeat this 20 times over
from the receptionist to the anesthesiologist. It's a game we play
because the bastards at the front desk forget to update the bloody
computers and/or the bastards who come to give me my I.V and discuss
surgical procedures haven't picked up the fucking charts and read
them. Either way, I repeat, repeat, repeat 27 thousand times! But we
don't talk fear. I don't cry on anyone's shoulder, not even my
parents, which is another blog post entirely. I smile and act happy
even as my stomach rumbles, first from hunger, then tightens in the
opposite of anticipation. It's still cold in here as I hear the oxygen
level indicator they've put on my finger start to beep. The medicine
finally kicks in and my chest burns with that warm and fuzzy feeling.
I start to relax. I smile and now I tell them that if they can't find
a vein, I'll let them put the mask on first. They can do whatever they
want as long as I get out of this freezing cold room. Never mind the
trauma that stupid mask has brought me.
They ask me to slide up on the table so my head is in that squishy
spongy thing that holds your head secure. They strap a belt around my
waist like I'm going into outer space or something. I have no underwear
on, but that doesn't matter. You lose all semblance of modesty when
someone takes skin from your butt cheek! I know they've seen my vagina
to and why not? I'm open for inspection! Might as well get the gyno in
here to. I mean, if you're going to do it, you might as well do it up
right! Get the dentist to inspect my teeth, the ENT to inspect my ears
nose and throat. Maybe we can find a neurologist, a cardiologist, a
gastroenterologist, a Podiatrist and a proctologist. Did I leave
anyone out? Ahhh, yes! The pulmonologist!! Ok, did I cover everybody
now? Does everyone get a look?
You should, I mean, it is "your right". It isn't MY body; it's yours
to do with as you please. I feel used, owned, cheap, but who cares
about that!!
And that is the truth about surgery, the truth about how it makes me feel. 66 times, and it's not done yet.
Just one more to close my palate, but the area is covered in scar tissue that can't be removed, so it could be two more, or maybe three.
Nobody knows, nobody cares. Let's just get it done.
Up next part three.
Stay tuned,

Monday, June 20, 2011

What Is a Tessier Cleft?

I was born with a Tessier Cleft. It is also/otherwise known as a Craniofacial Cleft.
Craniofacial indicative of both the skull *cranium* and face, facial.

Let's break this down even further.

What is a cleft?

"A cleft is a gap in the soft tissue, bone, or both." *Patricia Bacon Smith, Mother to a child with Cleft and author of Tessier Cleft Info (Page 1)*

So, a Tessier Cleft is a cleft "that involves the mouth, cheeks, eyes, ears and forehead and continues into the hairline." *Patricia Bacon Smith, Mother to a child with Cleft and author of Tessier Cleft Info (Page 1)*

Now, in lay terms, I always describe mine as an open-faced baked potato without the 'good stuff', such as bacon, chives, cheese and sour cream. *See my About Me Page:*

When you hear cleft you may think of a cleft lip or palate. These clefts are very common. In fact, stats from the CDC show that 1 in every 600 births in the USA results in a baby with cleft lip or palate. This number increases when discussing families of Hispanic, Asian and Native American origins.

These clefts are also known as orofacial clefts *Relating to the mouth and face*, and are the most common birth anomalies in the United States.

Funny then, that we don't hear more about them, or see public service announcements. . .
Before we go any further down this path of discussion, it is only fair that I say this.

There is NOTHING a woman can do to prevent a cleft. Let me repeat this, there is NOTHING a woman can do to prevent her child from having a cleft.

Whether it's a cleft lip or palate, or a severe cleft like mine, which is very rare *between 10-20 people in the world have it*. These stats are based on stats I received from my doctor. Oddly enough though, he didn't tell me I had a Tessier Cleft even. He simply said it was a "Craniofacial Cleft". It took me going to Cleft Advocate and reading about a couple other families stories to find out for myself.

I feel it's very important to establish this fact, simply because so many women have either felt guilty beyond words and/or been asked by other people if they took drugs, drank or smoked. Being born with a Cleft of any kind is like anything else. Some mothers never drank, smoked or did drugs a day in their lives/during their pregnancies and had a baby with a cleft. Other mothers smoked, drank and did drugs and their babies came out healthy.

In my next post I'll get into the nitty gritty emotions, something I'm much more famous for as opposed to research. I can, will and do do research, but it is by no means my forte.

Please stay tuned!


Tessier Cleft Info:
Cleft Advocate A Program of Ameriface
Definition of Orofacial from the Free Online Medical Dictionary: