This is how it happened…

Hello, world!  I thought I’d try this blog thing.  I am an aspiring novelist, who is a childhood cancer survivor (or as one of my celebrity role models, Olivia Newton-John, would say ” cancer striver”).  I was diagnosed with stage 4 neuroblastoma in January of 1983.  I was barely 16 months old.  My parents had noticed that I was walking funny, leaning on walls and furniture and falling down a lot.  My mom brought it up with a nurse at my regular check-up, and the nurse assured her that all babies fall down a lot when they first start out walking and it was probably nothing.  But it was something, as tests came back positive for cancer.  The tumor was attached to my right kidney, on my right adrenal gland to be more exact.  Right away, I was scheduled for surgery.  They had to postpone it, however, because I came down with a cold.  After this major surgery (during which they removed 50% of the tumor), I had another minor one to insert a Hickman line so the nurses didn’t have to poke me with a needle every time they drew blood or gave me chemotherapy.  Thus started 19 long months of chemo.  I also had 3 doses of radiation.  And then another major surgery, a “look-see” to find out where the tumor was at in terms of size.  In the 1980’s, they didn’t know a lot about treating cancer, and they knew even less about treating cancer in babies.  My doctors and nurses were just scrambling around, trying to save my life.  One day, my dad got a phone call from a doctor, who was crying.  The cancer had spread.  Later, they would find out that my lab results had gotten mixed up with someone else’s, but by the time they figured that out, it was too late.  I had two really bad ear infections that were overlooked.  I came down with a viral infection called encephalitis, and it attacked and damaged my brain stem.  My parents rushed me to the hospital because I was screaming and crying that my legs hurt and I had a really high fever as well.  Finally, I fell into a semi-coma, and during the next few days, my parents witnessed my body changing right before their eyes.  I was right-handed, but now my right hand was curling into my wrist, and my body was as limp as a noodle.  When I was released from the hospital, I was like a newborn baby again.  I couldn’t sit up or even hold my head up.  I couldn’t swallow, so I had to be nourished through an I.V.  Couldn’t talk or anything.

A month later, my brother Ryan was born.  I was delighted!  When my parents brought him home from the hospital, I was sitting on an armchair in front of the window waiting for them.  I got to hold the baby right away.  Ryan woke up and started crying.  Most of my hearing was gone (although no one knew this because I was smart…  I adapted to my new circumstances and taught myself how to read lips almost right away.  Fooled my parents for 2 1/2 years!), and so I didn’t know what he was doing.  I reached over and closed his mouth.  Everybody laughed.  They still chuckle about that story to this day.

I watched my brother, this new addition to my family.  When he learned how to crawl, I started scooting across the floor on my belly, eventually working up to my hands and knees.  And when Ryan began to walk, I started to get to my feet using furniture as a support.  My dad built me a little indoor ramp which helped me take my first steps independently since this happened to me.  My mom taught me to sign a little, though it was difficult since I could only really use my left hand.  And when I was 5 1/2, I got hearing aids.  My other brother Patrick was born.  Two years later, my little sister, Jacqueline, was born.  I was so happy to finally have a sister.

Sooner or later, my parents knew that I was going to need a back brace, since they radiated only half of my spine back when I was being treated for the neuroblastoma.  Half of my spine grew with me, and the other half didn’t.  They knew even back then that I would develop scoliosis.  Shortly after we moved to Cashmere, Washington, they noticed my back curving more and more.  Finally, they couldn’t wait any longer.  I, of course, being just 9 years old, didn’t understand.   I was just going by what was happening in the moment, and I just knew that I didn’t like it.  They put me on a stretcher-like thing, with two bars at the sides and one narrow strip of material down the middle.  I was so scared I was going to fall, despite of how many pairs of hands were holding on to me.  All I knew was that if I fell, I would be completely powerless to stop myself from being hurt.  And I’ve always been completely terrified of physical pain.

I was 14 when I had my first back surgery.  My doctors originally wanted to go ahead and fuse the whole dang spine, but my parents were a little leery of this, since no one could promise them I would still be able to walk afterwards.  Finally, one of my surgeons spoke up.  His name was Dr. Bill Bronson.  He and my dad had gone to high school together.  He suggested that they fuse part of my spine then, and later, they could go back in and do the whole thing if they really needed to.  He said that if we did do part of it now, chances are good that it might break down over time.  But it would buy me time.  And so that is what we did.  I was promised that I would be free of the brace eventually.  And so this is what we did.  I missed a lot of school during eighth grade, but I was able to graduate to high school with my class – the class of 2000.

High school was, well, it was high school.  Full of teenage angst and tears and frustration.  But also a time of liberation.  For the first time in my life, I knew what it was like to really have friends I could count on.  These were friendships that lasted too, which was so important to me.  I never had anything like it before.  In the middle of my sophomore year, I became friends with a girl named Tammy who was in a grade above mine.  We were kindred spirits. When Tammy graduated, I became friends with a girl named Valerie, who was in my class.  We kinda bonded over the show Buffy the Vampire Slayer.  🙂  I absolutely love that show.  It speaks to me, to my heart.  Buffy Summers was alienated because she was different.  I was too.  I understood the heroine completely, because what she was going through, namely the ostracization by her peers.  And I loved the fact that in Buffy’s world, the problems that teenagers face become literal monsters.  How many times had I wanted to just beat the crap out of my problems?  How many times had I just wanted to give up, but instead I pressed on?

“You have to be strong… The hardest thing in this world is to live in it.  Be brave.  Live…”  ~ Buffy Summers, season 5, The Gift

“Make your choice:  Are you ready to be strong?”  ~ Buffy Summers, Season 7, Chosen

After high school, I went on to get my AA degree at the local community college.  Fall of 2002 saw me moving into a dorm at Central Washington University.  I decided to major in English because I’ve always loved to read and write, and I learned at an early age that I could make myself be understood (because of my hearing loss, I have a speech impairment) if I wrote down what I wanted to say.  This bloomed into creative writing.  I lived in a dorm room by myself and got to be fully independent for the first time in my life.  I absolutely loved it.    I graduated with my Bachelor of Arts in June of 2004.  That summer, my back started acting up.  If I did a lot of walking, I would be in so much pain I couldn’t move.  This went on for a year.  In summer of 2005, I had my second back surgery.  Dr. Bill Bronson was my primary surgeon.  The work they had done before, when I was 14, was breaking down, just as they expected.  Dr. Bronson went in and fixed that one area.  I was in the hospital for about 5 days and then went home.  That night, however, I felt something give inside me and a burning pain started in my left thigh.  I didn’t know how much it WOULD hurt until the next morning, when I tried to get out of bed.  Oh my gosh, it was the worse pain I’ve ever felt.  Excruciating. I was like, okay, this is it.  This is the pain I’ve been expecting all my life.  My leg felt like it was on fire, if I had known what being on fire felt like.  I screamed and cried for 4 weeks straight, through 2 rounds of steroids.  They thought I had a pinched nerve.  Finally, I went in for x-rays.  Oops.  All the hardware they put in during the surgery was loose inside me.  I remember Dr. Bronson saying surgery had only a 60% chance of fixing it.  I just stared at him.  I was like, seriously?  But they finally went in and fixed it and I woke up without the burning pain.  The only thing was I had to wear a back brace for 3 months to help stabilize my spine.  Ugh.

After that, my back was fine for a while.  And then it started hurting in the morning when I sat up to get out of bed.  EVERY. SINGLE.  DAY.  It always went away eventually, within 10 minutes or so.  But while it lasted, it was excruciating.  Because it went away, I was able to ignore it for 2 years.  And then, finally last summer, I had the full she-bang done.  9 days in the hospital.  And then my parents started remodeling our house, to give me a room on the main floor.  I had fallen down the stairs multiple times before, and we all knew if that happened again, it wouldn’t be good.  Since I have a rod the length of my spine inside me, chances are that I wouldn’t survive another fall down the stairs.  And all the bedrooms were upstairs!  Last summer was very long and boring…  I was either stuck upstairs in my room or stuck downstairs.  I had a physical therapist come to the house.  I relearned how to walk.  But while I recuperated, I couldn’t go out and do stuff.  Thank goodness for a mail order library and netflix.  Without these two things, I would have surely lost my sanity.  And of course, my shih tzu, Buffy (yes, yes, I named her after my favorite show).

I have my room downstairs.  I have my dog.  I have my niece Aliza who is 2 (her daddy is my brother Patrick.  I absolutely adore her momma Angelica!).  I am pain-free.  And now it is time to get serious about writing!


3 thoughts on “This is how it happened…

  1. I story is painful, but you are a lovely, smart, and tough, young woman with a will to live and many talents. Your writing is wonderful and your sense of humor delightful! Yes, it is time you get into this gift you have and write your little heart out.

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