Katie, brave Katie.
Thank you for sharing your story.
It is so important for those who come after you.
Have fun in your disease-free, non-judgmental, forgiving life.
Enjoy every day and live.
Sincerely,
Melissa
*******************************************
My battle with Cushing's disease
By Katie Rozenas
You may not know by looking at me now,
but I recently fought a battle. All my troubles started in January 2007, when I
was 15 years old, and I began gaining weight. As the year went on, it only got
worse and my weight gain became more and more noticeable with every passing
week. Over the summer, I tried different weight-loss programs but nothing
worked. It got to the point where none of my clothes fit me anymore. A red flag
went up in July 2007 when I stopped getting my menstrual cycle. I went to the
doctor, but she said it was probably from my rapid weight gain, and that once I
lost some weight I would get it back, but just in case she referred me to a
gynecologist. In December I started Weight Watchers and ran on the treadmill
for one to two hours religiously, but I still was disappointed when I got on
the scale. Every week I would only either gain or lose a little, then gain
again. I didn't know what I was doing wrong, since I was following my points
and filling up on water. I knew then that I was fighting a battle within my
body for my health and self-esteem.
I told the gynecologist my symptoms and
she said I might have either polycystic ovarian syndrome or something wrong
with my endocrine system, so she referred me to Dr. Madeline Fay, an
endocronoligist in Worcester. Finally, after several tests, in March of 2008
Dr. Fay told me I had Cushing's disease. After a long and frustrating year of
not knowing what was wrong with me, I finally had an answer. I was so relieved
to find out that the weight gain wasn't my fault that I couldn't stop smiling.
Despite my happiness at knowing what
was causing my symptoms, Cushing's is a rare and difficult disease. It's
characterized by obesity, an inability to lose weight, a buffalo hump, stretch
marks, a moon face, masculine qualities such as more facial and body hair,
patches of dark brown or black skin on the neck, arms, breasts, or thighs and
loss of menstrual cycle. I was very skinny before I started showing the
symptoms. I had a fast metabolism and could eat whatever I wanted and not gain
a pound. In all I gained 75 pounds in the course of a year. I went from 125
pounds to 200 pounds (at my heaviest). I had blamed myself for gaining the
weight, thinking I had overeaten because of stress and my metabolism had slowed.
So I was relieved when I found out I actually had a medical reason, but the
"answer" to my problems was not simple. It is very tough having
Cushing's because it's caused by a non-cancerous tumor on the pituitary gland,
which is located in the brain. The only treatment for it is brain surgery. It
was at this point that I knew I was facing my biggest battle ever.
The most painful thing was what my
weight gain caused people in and out of school to say about me. It was so hard
to wake up every morning and get dressed in clothes that would hide my body. My
family thought I was eating excessively and blamed me for my weight gain. My
classmates said things like, "I don't blame her for not wanting to go
swimming. If I was like her, I wouldn't either" and "What, does she
have diabetes?" and "Look at that girl, she's such a chunky
monkey". It got to the point where I didn't eat or jump or run in front of
people. I knew people were talking about me behind my back and that was bad.
But if I found out what someone said about me, I was not only hurt, I also
started to hold a grudge against that person. But the second I found out I had
Cushing's, I told all my friends with a text message. I told people I knew,
especially the big mouths in school. I did everything I could to spread the
word. My parents told everyone they knew and I told everyone I knew. I would
work it into a conversation, and say "Oh, you didn't know, I have a brain
tumor. That's why I put on so much weight." I tried to keep my head up,
but it was hard when I felt like the world was against me and time was passing
me by.
The biggest challenge I had to overcome
was not the physical pain—even though that was very difficult—it was the
emotional and mental pain. Although my parents were physically with me the whole
time, I still always felt alone. My friends looked at me differently after I
gained the weight and shied away from me. They treated me as an outcast. Guys
stopped flirting with me and they hardly talked to me. Once my friends found
out that "Katie Rozenas had a brain tumor" it was a whole different
ballgame. Some were compassionate, some were scared, some were apprehensive and
some stayed the same. People became my best friend after they found out. People
I hadn't really had the best relationships with in years. I felt as if no one
knew what kind of pain I was going through. No one else knew what was going on
inside my head and I was always very emotional because of my elevated hormones.
I overcame these challenges by looking to the future and what I wanted to
accomplish. There was nothing I could do about my physical state. Until the
surgery, no matter how hard I tried; I couldn't lose any significant amount of
weight because of the tumor. It was extremely frustrating and depressing for me
to be so helpless, but I had anchors. I had the perseverance to do well in
school even though I was often absent to attend doctor's appointments. Although
it got to be a hassle, I knew I had to keep my grades up. I wanted so badly to
stay on National Honor Socaiety and to make First Honors again. I managed to
maintain an overall A average throughout the year, and I did well in my AP U.S.
History class. I didn't want this illness to beat me academically as well as
physically. I also kept going to Girl Scouts, until I got very sick. All
through this battle, I continued on my Girl Scout Gold Award, and continued to
do service projects and volunteer work for my community.
"You have a brain tumor and the
only solution is brain surgery to remove it". Imagine hearing that when you're
16 years old and have never broken anything and have only gone to the hospital
two or three times in your life. That was my reality in March of 2008. I knew
what was in store for me, but I wanted to get better so badly I was willing to
do anything to get back to normal. My parents and the rest of my family were
scared.
The night before my surgery, my friend
Jordan instant messaged me telling me how great I was going to do and that I
was such a strong person. She said she would see me Sunday when she was
supposed to come visit me and then I signed off. I was so scared that that was
the last time I would ever talk to her.
So on May 16, 2008 I woke up at 4 am
and was brought to Children's Hospital Boston, walked into pre-op, was taken up
to the 6th floor, given a hospital johnny, given anesthesia and wheeled into
the operating room to have brain surgery. Everything went well, but I woke up
with a terrible headache and a sore throat. It was horrible, but I got through
it. I think now about what it was exactly that I "got through" and
certain aspects come up in my mind. I think about the fear of going into the
operating room alone without my parents, and the fear I had of something going
wrong. I truly thought I was going to die. Then I think about how I stayed
strong because I knew I wasn't the only one scared. My parents were in the
waiting room with my aunt and uncle clenching each other's hands. After waking
up from the anesthesia, I was so tired and my throat hurt so bad that I just
wanted to sleep but when I heard my surgeon, Dr. Ed Smith, say he was going to
talk to my parents, I told him to tell my parents that I loved them. When they
heard that, they knew I was okay I think about my small veins, how hard it is
to get an IV in, and how many I had; so many that my arms and hands were
bruised. I didn't like seeing my blood on the outside of me and the IVs got so
sore. Then I think it's only made me braver. So when I hear someone say I have
to go get blood drawn today I just laugh to myself and think about how many
times I had my blood drawn.
And I wonder, why me? Then I think
about those kids at Children's who won't get better and I count my lucky stars
that my disease was curable. I think about the 5-year-olds with cancer and I
wonder why I am so selfish.
I think about how the ridicule of
others has taught me not to judge others and to be more understanding because
you don't know the real story. If there is one thing I want people to take away
from my story, it is that you never know why the person sitting next to you on
the bus is obese or what the rash is on that person who you always pass at the
grocery store. I don't want people to feel sorry for me. I just want them to
take from my story this moral and treat other people better. I have eyes that
are less judgmental and a mind that is more open. When someone walks by me I
think maybe it's not their fault. And that is one thing many people, not only
16 year olds, don't think about as they go through life.
I have lost 65 pounds since my surgery
and I am feeling better. I am still on a lot of medicines but I am almost back
to the way I was before. My old clothes fit me again and I feel more confident.
However, every time I think about what I "got through" I think about
and glance down at the battle scars that Cushing's left me that will never go
away, for they will only fade in time except for when the blood pulses through
my veins.
To read Katie's journal project for her junior year, click here:
