Sunday, May 15, 2011

the tuff part of indianna

pic 1. in the waiting room before it all began. pic 2. this was my last area of tests that day, they were checking my lung function in the pulmonary department. i was hooked up all over the place with different patches. the last series of pictures is me trying to get my pill down. i wanted to forever have that moment captured so as wierd as it was to take pictures of myself as i was emotional, i did it. i would have to say it also really helped me through the process.
for about three weeks before i flew to indiana i was so nervous that i felt sick to my stomach constantly. i wasn't nervous for the flight. i wasn't nervous to be in a hospital or that i have to take a pill or two....i was nervous because i HAVE to take pills every single day. i have been prescribed a wide variety of different drugs for my pain. vicodin, neurontin, amytriptoline, nortriptoline, oxycodine, and a couple others i cant remember the name of. obviously i have pain. sometimes, crazy teeth clenching passing out sort of pain; but i have a really hard time taking pills. i do not want to get addicted. they have all been mind altering. which is the worst. you also become immune to it, so eventually you need to change drugs or increase your dose. there was actually a time for about 4 years that i quit taking anything and would just pray instead and honestly, i had less pain then than ever before.
the thought of taking up to 7 pills a day put this dark cloud over me as well as a twisting nauseating feeling in my stomach. of course there is that awesome sunshine of hope for the reason i am taking gleevec that tried to break through that dark cloud. but nothing would settle my stomach.
during the first few days i was in indiana i was still having these major dizzy/gonna throw up spells. it was embarrassing and really inconvenient which started to make me really frustrated. lucky for me i was distracted by my lovely bible college friends that i got to visit, my mom, and bricks. bricks were everywhere! bricks made beautiful homes, roads and sidewalks. they were amazing!! on the day of my appointment(s), these bricks led me to the university of indiana. sort of like in the wizard of oz, how the yellow brick road led to the emerald city. well, riley's clinic is my emerald city and dr. robertson is my wizard.
my mom and i were at the hospital for 11 hours. cindy and dr robertson took such great care of us. like i have never had before. i had a pet scan, i had a full body mri and i had to do a few pulmonary function tests. we also met up with dr robertson when it was all over and he went over some results with me. i was eager to find out about big bertha's growth. he said she grew a little bit. a few centimeters. however, this is not enough growth to explain why i am out of breath so frequently. he suggested it may be my lung function becoming weaker because of all the tumors i have in my spine. this really freaks me out. my lungs becoming weaker because of the tumors on my nerves? so these tumors can eventually paralyze my lungs? i was too afraid to ask this question. but what else could that mean? if my lungs could be weaker from tumors, then what does that mean for my lungs as these tumors grow? just as my vocal cord did, i'm sure that means my nerves controlling my lungs can be paralyzed as well.
i don't remember much else that we talked about. i was in a daze. i had only eaten a tiny energy bar in the morning, and i was fully ready to be in bed. cindy and dr robertson handed me my drugs and a pillow pet, and said their goodbyes.
after my mom and i arrived back at our hotel we showered, ate dinner, and turned out the lights. my mom fell asleep quickly. i stayed awake, knowing i had to take a pill. my first pill. this was such a battle in the mind for me. once i took my first pill it would be like i am submitting to a drug. like i am accepting that i have a disease all over again. accepting my tumors (twice a day). accepting i am too weak to fix it. that i am not in control. that i am relying on a drug. oh, it killed! it took me nearly an hour to get the pill down. i sat there staring at the pill. examining it. crying over it. glaring at it. allowing it to come near my mouth....then taking it away again. i knew that this was a huge moment for me. so i documented it with pictures. taking the pictures sort of lightened the mood and somehow helped me through the process. i would have to say that once i got it down, i felt at peace. the initial step was torture. i know this probably sounds crazy, but once i swallowed it down; i felt like i was a warrior princess in the front lines. i had a shield and a sword, and was covered in armour. i was ready to fight against my nasty army of tumors and i celebrated that moment with my pillow pet.
i am so thankful that i have been excepted into this trial. i am taking my pills twice a day, slowly increasing my dose. gleevec makes me severely nauseated so i am also taking an anti nausea med which helps with that a bit. i am proud to say that when i take these pills i don't feel like i am taking a 'drug' like i feared. i feel like i am taking medicine. taking 'hope', a chance. so much of the battle is in the mind. i am so proud that i have conquered this one.
now only if my tumors were just in my mind.


  1. love you crazy Kelly! I'm praying for you, and I love your blog.
    Your maui Bible college Pal,

  2. The Gleevec is a weapon that God has given you to use to fight the evil tumors. Fight on my little warrior! You have always started slow and then amazed everyone with you amazing strength and determination to continue through the pain, keeping your eyes on the goal. You truly inspire me.
    Love you my Kelly Belly