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.

my roots

here are some of the people that have made me stronger. who have helped me stay grounded and who have supported me and walked with me through the hardest parts in my life. thanks to them i am rooted deeply in faith and i will never give up.

first we have one of my favorite pic's of my older sister and i. this is a cherished picture. my sister died in a car accident in 99. this by far is the hardest battle i have. the pain never ever goes away. she was 16. it was 11 years ago. i still call out for her, i still get excited to tell her things. then reality smacks me in the face, emily gave me everything i ever lacked growing up. courage to talk to a boy, faith that things will get better, she gave me self confidence, let me squeeze in her twin bed at night to comfort me when i needed. she gave me it all. now she gives me more reason to love and to live each day fully because you never know whats going to happen next. pic 2 my mom and i. i admire her so much. she has gone through so much in her life and she is still full of love and faith. i hope to be as strong of a woman as she is. the greatest joy in my life is making her proud. pic 3. my addicakes and i. she has an old soul. she is so full of wisdom, patience and love, i am soo blessed to have her as one of my closest friends. pic 4. noi and i on her wedding day. i love this girl so darn much. she flew into my life like an angel 11 years ago. she has rocked my world, she is one of the strongest people i know full of insight and courage. pic 5. eli and i. this is my man. he saved me from myself. he has taught me so much. he turned my complexes upside down and has allowed me to see and trust love in a whole new way. pic 6. greema and i. this woman...was my rock. she was my refuge. talk about a strong woman. i would escape to her house and her lap when i couldnt handle my life. her love and comfort will stay with me forever. i miss her so much.


recently someone i know was explaining her husbands health status and i was completely baffled as i watched her. "it has spread everywhere" she said. "in his shoulders, legs, ribs. its everywhere. "he doesnt want to do chemo again, tonight we are going to talk about options and things." i was speechless. the jaw of my heart hit the floor and i did all that i could to keep tears from falling. i wanted to be a mirror image of her. i wanted her to see me strong so she could maybe have a little more umph for the day she had before her.
in indianna while preparing for the trial, i was in the childrens oncology department. as i was checking in, a man ran up to the counter and asked for a tub. i hadnt any idea what he was talking about. then i look over to where he was sitting. a frail, adorable little girl sat there vomiting into her hands. the hairless little boy and his parents a couple rows infront didnt even turn to look. the receptionists quickly grabbed a tub on their desk and handed it to the man. clearly this is a regular event in that department.
another woman i know just lost her husband a couple months ago. through his battle with cancer, through it all, i have never once seen her down. she is one of the happiest most encouraging women i know.
a young woman i know waited 370 days to be reuinited with her husband after he was deployed.
lately i have been trying to think about other peoples hardships before i think about my own, when i just think about ME. it is overwhelming. i get trapped in 'why me' when all i think about is me. why think about ME so much anyways? when i step back and look at the world around me and look at all these people. not think of them as just the person infront of me in line, or the guy at the cross walk. my co-worker. when i see them like i see me. when i see my co-worker holding back tears as she says '2-3 months left'. my life doesnt seem so bad.

a poem by johnny ray ryder jr. reads:

A mighty wind blew night and day, It stole the oak tree's leaves away
Then snapped its boughs and pulled its bark,
Until the oak was tired and stark.
But still the oak tree held its ground,
While other trees fell all around.
The weary wind gave up and spoke.
How can you still be standing Oak?
The oak tree said, I know that you
Can break each branch of mine in two,
Carry every leaf away,
Shake my limbs, and make me sway.
But I have roots stretched in the earth,
Growing stronger since my birth.
You'll never touch them,
for you see,
They are the deepest part of me.
Until today, I wasn't sure
Of just how much I could endure.
But now I've found,
with thanks to you,
I'm stronger than I ever knew.

Gods grace is sufficient for whatever we go through. we just have to turn to Him and accept it. we all go throuh trials, the wind will come. it is inevitable.
i am so blessed to be surrounded by these examples of love, faith, and courage. i have learned so much from my family and friends. these are the ones who have helped me develop my roots. without them in my life and without believing in Gods love for me and having faith in Him, i would never have been able to handle any of my lifes hardships.
so where are your roots?

the fun side of indianna

so sorry about all the huge pictures. i tried to resize them in photo bucket. but instead of resizing the photos like it easily did on the pics benieth...it just chopped heads off. i am gonna fix it later, but i just had to put this post up. the super long post...will tell you about these pictures. except for the sky mall magazine. i just think those things are hilarious. the things people think of...very entertaining. =)


this is just a day to day description of what i did in indianna aside from any tumor-ey, gleevec or emotional details...
we arrived on a very rainy and windy friday in Indianapolis Indiana. this air port was huge. my home towns airport has 2 terminals. if i'm not mistaken, a couple years ago it was just one. the add on was a pretty big deal i guess, changed the whole entire airport. entrance, parking lot...everything. after all they did double the amount of terminals so it was about time they made it look like a real(ish) airport. anyways. now in Indiana. kristin. my beautiful friend from bible college was gracious enough to ask for 4 days off from her job so she could assist in picking us up from, and taking us back to that gigantic airport. AS WELL AS, take my mom and i wherever we pleased. of course, after a long days travel, our first request was "Hotel!" as we made our way to the hotel in the 'city circle' so they call it. i was drooling at all of the bricks i saw. brick side walks. brick roads, and building after building made of BRICK. i could not stop smiling, yes because of the bricks. after we arrived at the hotel and got settled in, we decided to walk around the city to look for some grub. PF changs was in the mall that was a block away...so immediately upon seeing it, i was sold. before we got our appetizers i was trying with all of my might to stay awake. my eyelids we a thousand pounds. my head felt like it balanced on a tooth pick neck. it was terrible. needless to say. immediately after eating it was bed time. we went back to our hotel and fought over who would pay for parking from kristens car. it was 18 dollars!!! for 3 hours!! the hotel clerk must have gotten tired of listening to us and she took care of the tab. hahaha. i slept soundly that night.
(saterday) i got to be reunited with jiyun. jiyun is my lovely roommate from bible college. we roomed together for a year and a half. we created an amazing friendship then...and it most certainly maintained all of its depth and meaning till this day. when she called saying she was a minute away, i grabbed my things and headed out the door. upon seeing her, my heart started to sing. she was parked on one of the main roads downtown...her stick straight dark hair covered her face in the drivers seat. i tried to just walk to her...but then she jumped out of the car. i was so excited to see her tears filled my eyes a lump came into my throat and i ran at her. it was totally a scene in a movie. the wind was blowing our jackets and our hair all over the place as our hug spun us in circles under a traffic light. we had a grand day. she took me to a couple shops, though i didn't buy a thing i still enjoyed my self. oh, and we had the best cupcakes ever. 'flying cupcakes'? we had dinner with her husband and it all felt just the same as it did 8 years ago.
(sunday) was a beautiful sunny day...i slept in and then i went down stairs to grab some starbucks. that day my mom and i walked around and explored the city. we went to a museum, visited a wishing fountain, gawked at the beautiful buildings, went out to eat and took lots of pictures.
(MONDAY) we spent 11 hours in the hospital....(not to talk about it THIS post though) (tuesday) i did my daily routine of getting starbucks in the morning. this was the day we were leaving and i was dying to try the starbucks that was on the corner about a block away. so i did. it then began to rain. this rain is a bit different than the rain i'm used to. these rain drops were at least the size of a nickle. i laughed aloud as i took my coffee outside and stood under the awning. knowing that i was gonna get wet. i walked about 20 steps and the rain drops turned into quarter size drops coming down about 300 drops per square foot. it literally felt like i was walking through a water fall. my steps were in a constant puddle, 2-3 inches deep of water. no body else was on the streets but me. literally. not a trace. also, there was no trace of another awning. the wind was going towards me...so the rain drops were horizontally pounding me as i tried to get to my hotel. but i couldn't see anything. like holding your eyes open under water. it felt almost worse cuz the rain drops were landing in my eyes. finally i reach the door to my hotel. once inside i just stood there and laughed at myself. i couldn't believe what had just happened to me. i was caught in a flash flood. i looked at my clothes...and their wasn't one piece of me that was dry. my shirts under my sweatshirt were soaked. my skin! my skin under my clothes were wet. every piece of clothing was soaked. luckily house keeping took all of my clothes....including my 5lb sopping wet shoes down to the basement to dry them in there dryer before we left for our plane home. we actually barely made it out. that night after i got home kristen sent me a text telling me that there were tornado sirens blaring through the city...we just beat the storm. i was so thankful for my my friends from college making this trip doable for me. if they weren't there, i don't know how i would have made it through.

back from indy & ready to fight...

these pics are from the day before i went to Indy. my boyfriend took me out to some of my favorite places as well as NEW places that are now on my favorites list....in pic 1 i am at a CHEESE FACTORY! yes, i love me some cheese. some local cheese, some 'rogue creamery' cheese, best cheese i've ever had! in next 2 pictures i am in a chocolate factory!! where the chocolateer was preparing for easter with his very own type of easter bunny. the voodoo chocolate bunny, they looked pretty nasty with one eye and blood oozing out everywhere, but it was unique. that tree in pic 3...yea thats 100% chocolate. this guy has mad skill! pic 4, last but not least, i am eating some incredible sweet potatoe fries at one of my favorite places in ashland.
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before i left for Indy i was so fearful; being on multiple pills a day freaked me out. however, i was up for it if it meant to fight back against my tumors. i would consider myself a very strong person. i tolerate pain really well. REALLY WELL. i was a runner for years this sport helped me learn to push through pain at all times. in one of my previous surgeries, i wasn't numbed correctly, which means... i felt it. that's right. i felt it all. when he asked me frantically what i wanted him to do, i yelled "get the tumor out and don't leave any of it behind". i have an uncountable amount of tumors on the nerves in my body, easily over 1,000 they say, but i only take 2.5 mg of oxycodone every so often. i haven't taken one in a week. i have lost a sister to a car accident...the most painful thing by far, but i haven't allowed that pain to take over who i am. see? im tuff. right? haha, at least i'd like to think i am. going through all these things and other unmentioned things, i have experienced pain. but i cant allow my pain to rule me. i will also not allow my tumors to rule me. pain ceases. though the questions of 'why me' may be never ending. my pain is mine and without pain, where is mercy, grace or forgiveness? where is unconditional love and faith? so instead of looking at my pain as pain. i am challenging myself to look at the faith that it has given me. i will see how close it has brought my mom and i together. i will see my sister emily and know i will be pain free with her one day. i will see Jesus, and all the pain he bore on the cross for ME. i will see the love that my boyfriend has for me, to stay with me, though my future is unclear. i will be so thankful that i have these things. my pain is my beauty. my pain has shaped my life. my pain is my motivation. its funny how my idea of pain changes when i see what my pain has given me. when i was a runner, when it started getting hard through the last mile or 800 meters. thoughts would go around in my head that i should slow down so i could feel better. the funny thing is, the pain didn't subside when i went slower. it got worse almost. it was as if my body knew i was giving up, so it threw in the towel as well. same thing in life. giving up doesn't make you feel better, giving up is always a downward spiral. it always felt right for me to push harder when i thought i couldn't stand it anymore, to go even faster than i had planned, to pass 2 more people than i had just told myself to and then do it again. i would always surprise myself with how i finished. it is so much better to live your life pushing through the pain and trying even harder than you planned on. if you do this, i guarantee that you will surpass your idea of what you thought you were capable of.
ps i have so much more to say reguarding gleevec and my trip to indy. i am so behind in my posts, so please hang in there as i catch up... thanks =)

I'm dating MacGyver?

picture 1) my family and i in '99. a few months before my older sister died in a car accident. now she is in heaven dancing her heart out. picture 2) my best friend 'Noi' and i being amazing. dancing with a pot and lid on our heads. picture 3) my man and i cooking =). picture 4) family night at my parents house infront of the fire pit, (very excited for more of these nights through out the summer!) picture 5&6) my sling and i after crying. picture 7) the tumor in my spinal canals' internet debut....world, meet "the creeper" he is in my spinal canal in my cervical spine (neck). i do wish him to leave promptly.

i don't really know what to say... i'm having a hard day. i've been working on this post for 6 hours trying to think of something positive to write about. i want to tell you encouraging things. i want to be inspiring. the reality is i just stopped crying from pain and frustration. the pain in my right shoulder and arm is so severe. it feels like a have flames or hot smoke flowing through my right shoulder all the way down my arm; it's causing my whole right arm to be tingly and cold. my boyfriend just made a temporary sling for my arm out of towels and plastic bags to relieve some of my muscle pain. i love him. before my tears, i uploaded the first 4 pictures to tell you guys that i have an amazing support system of friends, family and eli. i was just going to keep this post at that and tell you that in the end, i can endure it all because of all the love i have around me. this is true, but i was stuck...my pain kept me from being motivated to say anything good. i stared at my screen for hours, then i lost it. as eli held me and rubbed my back, he suggested that i tell you all how weak i am feeling. i know i have done this before...i just don't want to sound like such a downer. dwelling on worries and frustrations just keeps me that much farther from the point where truth leads me. and the truth is that my home is in heaven. so anything that happens here to glorify Him will always be worth it...its just so hard sometimes to walk in that light, accept my weaknesses and be ready to face battle. so here's my moment right now. my tumors just beat me up, they still are beating on me. i feel incredibly weak. but my boyfriend just changed my view of this battle field. before i told him what was going on in my head this war zone was filled with defeat. my agony ruled my mind. i couldn't even think straight. the moment my first tears fell, relief was on its way. eli laid there with me and just held me. he rubbed me as i vented and he reminded me of the beauty and strength in tears. then just like macgyver would have done...he made a masterpiece sling. once i cried, it was as if i accepted my place in this world once again. i saw God in control again and i didn't see myself alone on the battle field anymore. i'm not saying that i'm now sitting here bursting with joy after this experience. i wouldn't even say i'm pleasant; but at least i have the right perspective. if it weren't for my tears or the love poured on me by my man, i guarantee you i'd still be sitting here not knowing what to write. don't be afraid to cry. don't pretend to be strong. don't resist love.

simple truths

this weekend was fab-u-lous. i went antiquing with two of my favorite people (eli and addi). my man and i bought the giant golden brass candle holders you see below. Addi and i just drooled on everything else. here we are wearing amazing feathery hats. i absolutely love old suitcases, one of these had a mirror in it! the picture of myself with some girlies (one in which is addi 'addicakes' 'addikins' or 'adds') is a picture i love. this, ladies and gents is 2 of addi's 3 sisters. yes, 4 girls and 1 boy. the Blacks run a busy household. i am considered one of there "adopted" children, here we are out to dinner. today is chelsea's birthday (the one on my left) happy birthday chelsea! oh yea, and whats with the giant cat book?! the wierd things that you can find at antique stores! ya know whats funny? is that no matter how hard we worry, God is in control an equal amount. He isn't gonna "use both hands" when we start to worry or "look both ways....twice" He is gonna do what He does regardless. isn't that weird to think about? this past week i was sort of a mess. don't even know how many times i cried. during one of my quivering lip attacks i actually realized this simple truth. my lip and myself stopped in their tracks and felt pretty darn humiliated before the Lord. i scoffed at my disbelief and then went on with my day thanking the Lord for the revelation. i swear i knew this before, but it was just brought to my attention in a whole new way, and i hope and pray it will be life changing. another thing that i realized, not about my tumors at all...but i took this 'revelation' to another side of my brain. the judging side. no matter how hard i judge a person...it does nothing good for that person. to God, it doesn't matter what I think about someone! isn't that funny? i thought it was funny!! like my opinion of someone else means anything! oh man. like i really know THEIR life. its so funny to me that we get caught up in talking about others negatively when all the while our opinion doesn't matter, yet for some reason we have something compelling us to express it. thumper's mom from 'Bambi' really had a good point. "if you cant say something nice, don't say nothin' at all!" needless to say, last week i was pretty humbled with my worry wart tendency, as well as my judgmental mind. i wouldn't at all say that i am a gossiping type of gal, but i have done it before. we all have. i am just so thankful that God gave me these truths to mull over in my head. the next time someone cuts me off on the road i will remember the time i did it to someone else. and the next time i start to worry, i will try to remember the last time my worrying accomplished anything possitive.