My Story With Cancer...
I never really wrote about my story with cancer. I honestly didn't write much during that time in my life because I don't think I wanted to admit on paper what was going on. Maybe I was scared to dig deep and lay out my heart on paper when I felt so fragile and ready to break. But I wanted to write about it. It's almost time for my 5 year victory over cancer and I couldn't be more excited or thankful. But with that, I thought it was time to write about it. I thought it was time to also open up my journal and share it. So here you go.
. . . . .
August 19th, 2011.
I got out of my friends car after we had goofed around at
Party City to celebrate her birthday, taking pictures with crazy hats and
soaking up all the carefree-ness that Sophomore year of high school had to
offer…
Only to have my mom rush over and advise me to get in her car immediately
because I had a doctors appointment/ follow up.
She was exasperated and desperate. And the crack in her
voice and the fear in her eyes told me something was wrong. But I only had to
wait and find out why.
We waited in this cold, small room. The doctor who I had
just met a week ago to have tests done for what I thought were just asthma
attacks at night, came into that room with the radiance of kindness gone and
instead a shadow of dread. She passed us a box of tissues as she informed me of
the mass that the chest x-rays had found. Something the size of a tennis ball
had made its way behind my esophagus and was pressing so unkindly on the right
ventricle of my heart. This explained the trouble breathing and the heart
palpitation issues I was experiencing. I froze. I’m only 15. I just finished
Sophomore year. What does this mean? My mom began to cry and use all the
tissues in that Kleenex box and I just sat there. Not saying a word. Because it
wasn’t really happening. There was a fog. And honestly I think the mind and
soul treats such news like this with a kind of numbing sensation through the
blood veins so to keep one from simply running off the nearest cliff from fear.
My mom and I made our way to the car and she asked her
silent and seemingly frozen daughter what I was thinking. I said I was okay.
Not fearful. Really not much of anything. But I prayed for us right then and
there… hoping that would comfort my mom who was experiencing all the emotions
my body refused to take on.
We got home and within the next hour I headed to church
because in my mind I wanted to escape back to normal. I wanted to be around
friends I considered so dear to my heart. Because that was real. That was a
place I wanted to be. Not here. Not now. Not with a mass in my chest.
So I walked in our youth group room with my new ukulele in
hand. I laughed, gave hugs, and played Somewhere Over the Rainbow for anyone
who wanted to hear. Then I was approached by two leaders that had been informed
of the situation by my mother, who only 2 hours into this awareness, had
already told a countless number of people. They told me how they knew. They
asked how I was. And I was frozen. I thought if I could ignore my fear and
brokenness I would be okay. I smiled (What I do best when I know of nothing
else to do). And they prayed. And we walked back into that room to sing songs.
And then, right there, as I choked on praise lyrics, as I admitted an ounce of
fear and an anger towards someone to allow it… a few tears found their way down
to my cheek… but no further than that because I wiped them away and continued
to smile.
Within the next week I was leaving the house, riding in the
car with my family to the hospital where I would have my biopsy and port
placement. People gave me coloring books and stuffed animals; I had multiple
friends and family meet me in the waiting room to give one last hug before I
headed to surgery. I had no idea what this day would entail. I swallowed down
that “sleepy medicine” and knew life was drastically about to change. They
rolled me back to the operation room and I remember the mask going on me and
still being awake, looking at the lights above me, seeing everyone in masks
walking around, and the table beside me covered in the things that would cut me
open and leave scars that would never leave. Fear engulfed me in a way it never
had before. Life changed. And as I drifted off I realized, no matter what I
felt, I had no voice in this matter. I was helpless. Life was forever going to be
different.
I woke up basically unable to talk above a whisper because
they had collapsed one of my lungs in order to get to the mass for a biopsy. It
took me over a week of painful breathing exercises and much laughter with
friends to finally get that dumb thing inflated again. It feels quite weird to
try to take a simple breath or speak or laugh and your own lung enables you
from doing so. Its like someone comes and chokes your neck right before you
laugh.
I had tubes coming out from all over it seemed like. One in
my chest from my port that was now under my skin, and two more under my left
arm for the sake of drainage. I was weak. I could barely move. Talk about weird
when you suddenly go from being independent to having to rely on someone else
to feed you, wash your face, and help you get to the toilet. Ya, big confidence
booster.
After this surgery I stayed in the hospital for 4 weeks. I
started getting strength back after about two weeks and with that I could walk
around and get up on my own. But not without hauling around this monitor thing
with me. This machine on wheels that attached to my port where chemo drugs and
fluids were constantly pumped through. I got tangled up so many times. I got
frustrated when I had to get up in the middle of the night and tripped and
yanked it so hard that I thought my port would pop out. Even taking just a
normal shower was a pain because they had to detach the monitor for only 30
minutes which meant huge bandages would be placed on and ripped off afterward. And it is there, with all of those things, I realized I was not free.
I couldn’t go outside. The whole, germs will give you an
infection and kill you thing. I just looked outside from my window as the
transition from summer to fall took place or I waited until a trusted friend
would sneak me out for just long enough for me to take a breath of fresh air
and realize life in that hospital room is in fact not life at all.
When I was strong enough after surgery they started chemo.
Sometimes several doses a day. And I will tell you now… I have never
experienced something so strange and powerful before. You feel it making you
weak. You have this hatred for this substance you know will make you bald and
hopefully save you instead of killing you. It made me sick. It gave me the
worst migraines I have ever experienced. It took away my energy to where all I
could do was lay there and plead for some kind of medicine to knock me out so I
could just sleep through it. It gave me night terrors where I screamed and
cried for hours afterwards… regardless of my mom assuring me they were not real
(Chemo drug responsible for that: The Red Devil. Lovely right?) It made me lose
my appetite. But not lose weight!! I just swelled up like a balloon. Dumb. I
would get spinal taps once a month or more where I would lay on my stomach and
they would stick a needle in my spine to inject chemo directly that way. Talk
about being sore after that one. But the drug they gave me beforehand made me
sleep like no other. So, one benefit.
I assumed my hair would fall out immediately. But it wasn’t
until about 3 weeks after my first chemo treatment that it started to gradually
fall away in clumps. In an attempt to keep up my spirits someone came in to
give me a cute hair cut and add some purple highlights because, why the hell
not? I wanted it shorter… I couldn’t imagine long strands of hair wrapped
around my hands as it left my scalp. No thanks. Then, as I started to notice an
increase of hair loss… it was time to show chemo who was boss. A sweet friend
and mentor in my life came over and shaved it off. We took pictures. We laughed
uncomfortably at times. But I wasn’t alone.
We took my hair away instead of chemo taking it. And I know without a doubt I would never change that. But a week later I still had small bits of hair left… I would wash my scalp and my hands would be black from the little hair that remained. And during one moment in the shower I lost it. I had a meltdown. I scrubbed and scratched my head raw until it was all gone. My head was shiny. And from then on I couldn’t look at myself or touch my head without a scarf or hat to cover it. I prepared myself for my scalp to be bald. But I never realized how odd it would look and feel to have zero eyelashes and eyebrows. That’s when the whole “you look like an alien” thing really started to kick in. I never looked people in the eye when I would go out. I saw the stares. I knew I looked weird. But I knew that regardless of this, I was still loved.
We took my hair away instead of chemo taking it. And I know without a doubt I would never change that. But a week later I still had small bits of hair left… I would wash my scalp and my hands would be black from the little hair that remained. And during one moment in the shower I lost it. I had a meltdown. I scrubbed and scratched my head raw until it was all gone. My head was shiny. And from then on I couldn’t look at myself or touch my head without a scarf or hat to cover it. I prepared myself for my scalp to be bald. But I never realized how odd it would look and feel to have zero eyelashes and eyebrows. That’s when the whole “you look like an alien” thing really started to kick in. I never looked people in the eye when I would go out. I saw the stares. I knew I looked weird. But I knew that regardless of this, I was still loved.
I had friends that cut their long luscious locks to support my change in hairstyle. I was never once without a visitor in that hospital room. And there was even a huge benefit thrown to support my family financially with the growing and insane list of medical bills.
I received more letters than I thought was possible (all of which I kept in case anyone was wondering). It was also during this time that my love for music and writing really grew. It got me through a lot of depression. I was even able to play on the radio and at various benefits.
I had a rooftop sweet 16 birthday party at the hospital. Though I lugged around that monitor, I still rocked the sparkly scarf and had so much fun with the amazing friends I am blessed with.
All good things right? I was told that I was halfway through
the process. And I was ready for that. But then I was reminded again of the frailty
of the situation. It was a normal day in October, I was getting ready to be
admitted for a chemo treatment and they did the normal “flushing of the port”
which is when they shoot this cleaning liquid like stuff to prepare it for
chemo. But about ten minutes after that happened, I collapsed. All power and
strength in my body left. I was helped on to the bed. My body was in shock. And
just like that, I saw life start to drift away. I couldn’t move. I couldn’t
speak. I just laid there wide eyed as I saw this small impatient room be filled
to the max with nurses who were doing their best to figure out the problem.
They rushed so much freaking fluid into my port to try to flush out whatever
had been put in. Turns out, that stuff was full of bacteria and in a matter of
seconds it had been put through that port connected to the biggest artery of my
heart and had then been pumped through my whole body. I was crashing. And
crashing fast. My blood pressure dropped dangerously low. The amount of fluids
they pumped into my port hurt like nobody’s business. They pulled and tugged on
my port from urgency, and all I wanted to do was to tell them that they were
hurting me… but I couldn’t. I heard and saw my mom weeping and wailing as she
saw her daughter collapse before her eyes. My oncology doctor was standing in
the doorway with his face pale and frozen. He was scared. This must be it. In
that moment I accepted death. I closed my eyes and decided I was ready. The
peace in that moment was insane. I felt them roll my bed away and opened my
eyes for a moment to see that we were in an elevator and a mask was then placed
on my face for oxygen. And then I looked at my mom one more time and fell
asleep. I woke up in the ICU. It was a weird feeling. Welcoming death then
having life jolt you back to reality. I was weak and the same dependence I was
forced to have after that initial surgery, was there once again. I stayed that
way in the ICU for about a week. After that began the continuation of chemo.
Something changed in me after that experience. I was okay
with death. And as I dealt with more sickness and awful side affects from the
chemo and saw my alien self in the mirror, I longed for that same peace I had
on that bed when I thought it ended. I was tired of being sick. I was tired of
going to the hospital. I was tired of people being worried about me and praying
for me and adding me to their list of people to visit at the hospital. I was
done. That depression and darkness was unlike anything I had ever experienced before.
It engulfed me like no other but I had to hide it with everything in me because
people were watching. I couldn’t let anyone down or cause them to worry more
than they already were. But when I was alone, I felt it. This shadow is what
encased me when the doctor came into my room one day in December as I was about
to be admitted into the hospital for another thing of chemo. He brought in his
clipboard with recent test results on it and said they showed that the cancer
was gone. I was baffled. I asked him to repeat himself. And then I had no words
to say after that. He probably thought I was so happy I couldn’t speak. So he
left the room for me to absorb it. And in that moment… joy was not the main
emotion I felt. I was confused. I had accepted cancer. I had accepted death.
And now I was informed that I was cleared of cancer and after just a few more
treatments I would go home and return to normal life. Normal life? High school?
A job? How do I even go about that? I was afraid. I was angry. But I was
healed.
My hair started growing back. As soon as it was enough to
cover my head I got rid of the scarves and welcomed all the head bands.
Though the cancer was gone, no one ever warned me of the battle I would face afterward. It was the most difficult. And the most isolating. I stepped right back into “normal” life. Hanging out with friends, going to church getaway weekends, finishing my junior year of high school.
But every day I cried. Every day I mourned. Every day I wondered if I could really get used to life. How can this be? I was healed. I was better. No more chemo. No more baldness. But I felt more isolated than I had ever experienced in the past. None of my friends understood. No one had experienced this cancer stuff. No one had to face death like that and then try to process life again. People were talking about how awful it was that their crush didn't notice them or how their teacher is so unfair and I’m standing there thinking back to all those kids at the hospital fighting cancer and how a good friend I met there lost her fight and I just attended her viewing.
I held her mom in my arms as she cried and pleaded that I make the most of this life I was given another opportunity to, though her daughter was not. I agreed. But deep down I feared I had lied. Because I didn’t really know how I could do that. I threw my middle finger towards a God who would allow all of these things. I grew angry when someone would complain about insignificant little problems. And just like that, I was alone. I thought about killing myself so many times. I even resorted to going back to an old habit of cutting my arms because it numbed the emotional trauma I felt inside. It hurt. Everything hurt. And there was no chemo or drug that could heal it.
Though the cancer was gone, no one ever warned me of the battle I would face afterward. It was the most difficult. And the most isolating. I stepped right back into “normal” life. Hanging out with friends, going to church getaway weekends, finishing my junior year of high school.
But every day I cried. Every day I mourned. Every day I wondered if I could really get used to life. How can this be? I was healed. I was better. No more chemo. No more baldness. But I felt more isolated than I had ever experienced in the past. None of my friends understood. No one had experienced this cancer stuff. No one had to face death like that and then try to process life again. People were talking about how awful it was that their crush didn't notice them or how their teacher is so unfair and I’m standing there thinking back to all those kids at the hospital fighting cancer and how a good friend I met there lost her fight and I just attended her viewing.
I held her mom in my arms as she cried and pleaded that I make the most of this life I was given another opportunity to, though her daughter was not. I agreed. But deep down I feared I had lied. Because I didn’t really know how I could do that. I threw my middle finger towards a God who would allow all of these things. I grew angry when someone would complain about insignificant little problems. And just like that, I was alone. I thought about killing myself so many times. I even resorted to going back to an old habit of cutting my arms because it numbed the emotional trauma I felt inside. It hurt. Everything hurt. And there was no chemo or drug that could heal it.
But I made it. I am here today. Five years later. Still
breathing. Still fighting. Still struggling. But going. I still get panic
attacks when I walk into a hospital. I still get uncomfortable when someone
asks me about my cancer. And I will occasionally drop a stupid joke about
having cancer, out of the blue, just because I can. And sometimes I just have
to. I used to avoid talking about it all together. It was a chapter in my life
that brought about only pain and fear when I thought about it. But I realize it
as being a part of my story that greatly impacted my life. I realize other people have in fact gone
through this or know someone who has. So in case you need to know, just because
a cancer patient smiles does not mean they are okay. And just because a cancer
survivor seems fine, does not mean they aren’t still fighting. Cancer attacks
more than just your body. It attacks your mind and your soul. But I have decided to
not let it kill me. I have decided to talk about it.
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