I’ve been wanting to write for days now and all of these
ideas have been floating around in my head, but I just couldn’t put my fingers
to keyboard. I had a feeling after Soul Cycle tonight with Sal I would have the
urge, and what do ya know?! I think Sal is my muse. He was on a "breaking down
walls" kick tonight, and realizing your own strength, which only comes with
facing challenges.
I have always had a tough time being weak, I swear, since
I came out of the womb. I have this thing where I feel like I need to put on a
strong face for myself, and for everyone around me; but why? What I have
realized is if I don’t break, fall, and even sometimes wallow, I can’t get to
that strength on the other side of the wall that Sal talks about. There is SO
much strength in weakness – it is actually beautiful. I am still working on
accepting that and being confident about it. I will always be dealing with what
I have, accepting it, fighting it, but I
have to find confidence in my weakness. This (Aggressive Angiomyxoma) is
what I have and who I am, like it or not! I am very good at having that
attitude with other things in life, but not with my Sarcoma. If I am secure
with my weakness, when I tell someone for the first time, their reaction will
be so much better. It’s like when you make a big deal out of something, it naturally
gets other people all worked up, right? Well, if I am confident when telling
someone story, it will put them at ease, and I think, even elicit a different
reaction. One of my GREATEST fears is telling my future husband (where is he?!)
what I have. But heck, this is me and I need to own it. And, to be honest, I have faced much worse in
life than having to tell someone what I have going on.
Tonight I want to share a little excerpt from something I
wrote several months back when I thought I was going to write a book – ha! That
got too daunting when I was five pages in and only on day two of the hospital
stay of my first surgery. Here is a snippet, which is by no means complete and I keep editing.
This is me being confident in my weakness – and all it’s glory!!
***
First surgery: October 26, 2010.
My mom drove me to the hospital that morning and my dad,
brother and sister planned to meet us there. I will never, EVER, forget that
morning, nor will my mom. I had to be there at 5:45 a.m. because I was first
case. It was dark outside and I think I was crying as my mom held my hand the
whole way there. To this day I get anxiety when I drive past the exit we got
off for the hospital.
We got to Admitting and I had to get undressed, put on a cap and gown, and this weird blanket. I was on a gurney with curtains to my right and left. It was weird and looked like the TV show Mash. A nice nurse came over to put in an IV and check my vitals. I think I was crying. My blood pressure was something outrageous like 160 over 90. I generally have textbook blood pressure. I was terrified – a fear a can't even describe. My mom kept holding my clammy hand. Next, the anesthesiologist came in and introduced herself and said she was going to give me some “cocktails” to calm me down. She gave me one into my IV and I instantly said, “It’s not working. It’s not working!” So they gave me another. After some questions and paper work, the nurse anesthetist came over and said, “Are you ready?” I was not ready. I felt like I wanted to scream, cry, jump out of my skin and escape all at the same time. I looked at my mom with tears streaming down my face and she gave me a huge hug and a kiss as they started to wheel me away. The last thing I remember is bright lights and seeing Dr. Albany (his nickname) come in with a Halloween surgical cap.
I was awake. I felt like I could barely move and my mouth
was dry. There was a nurse there asking me things, so I realized I must be
in recovery. My belly was sore and I was in and out. I would open my eyes for a
little and then closed them for a bit.
My sister, mom, and dad came in to see me. I later found out
they got special permission to come see me in recovery, thank God. I was so
scared. My mom was talking to the nurse. “She has not output! She has no
output!” I didn't know what that meant at the time, and I was too groggy and
tired to care. My sister came over and held my hand and I turned my head slowly
over to her barely getting the words out, “My nurse is a bitch.” Surgery or no
surgery – feisty Becky was still in there! My family kissed me goodbye and said
they would see me when I got to my room. What seemed like a few minutes later,
someone wheeled me to a room. I got there and no one was in there…minutes
passed…I think? I managed to feel around for the call button (even though my
mom hadn't Cloroxed it yet) and pressed it. Some dude came in and said, “Oh, we
didn't even know you were in here.” I didn't have the energy to say anything.
Finally my family came in. They were talking about how they got my room
mixed up or something.
My surgery was about three hours. Dr. Albany opened me up and what he found was even worse than he anticipated. The “cyst”
was, as he later stated, “the size of a baby’s head.” We told him how Dr. Dick (a
jerk doctor I had in Arizona) said the pressure I was feeling was “in my head”
and he challenged us by saying, “no, no it was the size of your head.” While I was open on the
table they did a frozen section to see if it was metastatic cancer. It came
back negative, thank God. If it was positive he would have had to remove the
tumor and all of the neighboring organs, which would have been the whole
enchilada – uterus, ovaries, bladder, rectum, part of my colon?
Dr. Albany was completely perplexed by the consistency of
what he found. He knew when he saw it that it was not a cyst and that it was
some sort of tumor. He called in the pediatric surgeon to see if he knew what
it was. No luck. The whole hospital was stumped. Since the frozen section did not come back positive for
cancer, his goal was to get out as much of the beast as he could, without doing
any permanent damage to me. I later learned the medical term for this is
attempting to have a “low morbidity rate.”
They tried for over
an hour to get it out and just couldn’t get it. I was opened up vertically
down my abdomen from above my belly button to way down south (it is called an
exploratory laparotomy). After surgery I was asking my mom (a nurse) if they had
retractors in me to really open me up and she just said to stop asking those
questions. They were about to prep me for a posterior approach (in addition to
the front), which would have meant they would have flipped me, taken out my
tailbone temporarily, and gone in my backside, when Dr. Albany said lets try
one more time. It was in that moment that I think my Pop-Pop, who had just
passed away a month before, was my angel in the room. Dr. Albany tried one more
time and he got it. He got out what he could and closed me up. Thirty-two
staples down my abdomen.
When my family finally got to my hospital room they all sat
around me and my sister put something soft on my chest. It was a stuffed monkey
that she named Henry. I was never much of a stuffed animal person, but this one
was special. I held onto to that monkey so tight, and it did not leave my body for
the next four days. He sat perfectly on my chest and was a nice little chin
pillow.
When the nurse came in, I looked at the big bandage that
went vertically up my stomach and started crying, asking if I had a belly
button. I was also confused about how I would pee. They explained that I had a
Foley, which meant they put a catheter in me while I was out and inserted a
tube that then fed to a bag where my pee went. Lovely. I later learned that
when my mom was saying I had no output she was referring to a lack of pee in my
bag, which is BAD after surgery because it means your kidneys are not working.
The nurses came in every so often to check my vitals and
listen for a pulse in my abdomen. I cannot even describe how sensitive my tummy
was to the touch of the stethoscope. Every time anything touched it, I
literally went through the roof with pain even though I was on a morphine drip (which my dad was worried I thought was a toy).
I was still not allowed to eat because they wanted to make sure my colon was
going to wake up. All I was allowed for the first day was a stick with a little
sponge on the end that my mom could wet and put in my mouth. I was going on 72
hours of nothing but liquids (because I had a colonoscopy the day before
surgery). And the incentive spirometer, oh the incentive spirometer. I had to breathe into it constantly to get the anesthesia out of my lungs. I would pass out and wake up to my mom holding it to my face! (Thanks, mom for the dedication because you know I wanted to throw that damn thing across the room.)
The nurses and my mom said that the best thing I could do
was to get up walking. They told me the first day would be tough, but I had to
work toward it. The afternoon of the surgery I worked with my mom and the nurse
just to slide my legs over to the left, and dangle them off the bed. I was
exhausted just after this and I did not move my own legs, they had to do it
for me. They then both grabbed me from behind on both sides of my body and
slowly tried to help me stand up. I was super dizzy and nauseous from the
anesthesia. I barely stood up and then started panicking because I felt so sick
and they said okay, okay that is enough and helped me back into bed. The nurse said
I did a great job and that just standing was really impressive for the first
day. You do not realize how much you use a part of your body until you are
without it. I could not even clear my throat because it hurt my abdomen so much. The
nurse showed me how to put a pillow on my belly when I had to cough or sneeze.
After that, my cousin and one of my best friends came to visit me and I just
remember talking and falling asleep mid sentence, then waking up, and then
falling asleep again.
The first night was the worst. I had a 103-degree fever,
which the doctors said was normal due to high trauma of the surgery. Little did
I know, that a fever was also potentially indicative of an issue with my
rectum. Dr. Albany had told my parents that my rectum might not be viable after
surgery and we would know within the first 24 hours. Thank God they did not
tell me that until later. My rectum survived. (Wahoo, you go boy!)
My mom was there with me the whole time. She never left my
side while I was in the hospital and the rest of my family came to visit every
day. She slept on the chair next to me and held my hand all night through the
railing. I could not move at all, barely slept, and was sweating from the
fever. People come in every hour or two to wake me up for vitals, blood draws,
heparin shots, and I can’t even remember what else. Then at about 5:30 a.m. the
doctors came in for rounds.
About seven people marched in and lined up in front of me. Two of them were residents I had already met and the rest I had never seen before. One of the residents was reading my case out loud, like on Grey's Anatomy, as the others listened. I was thinking to myself, I am not a fucking science experiment, is this really happening? Resident number two started to talk to me and I quickly put my hand up and said, “Woah, woah, woah.” Then one by one I went down the line, “Who are you? I know you. Who are you?” They each stepped up and stated their titles. When they were all done I said, “Well I’m Becky.” I needed them to know I was no science specimen. I was a 22-year-old girl named Becky.
