Monday, May 30, 2011

hard to swallow

1) i want or need this giant coffee cup, not sure which of the two. 2) addi and i at her sisters first coffee shop concert. 3) addi's other sister chelsea and i getting our grub on. 4) deeelish. pretty sure this is what will be served at the gates of heaven (if they had a welcome snack) time i must try with chocolate or yogurt covered pretzels. 5) i carry this with me everywhere. rubbermaid. liter. green. pop top that stays open when you drink and doesn't smack your nose. DOESN'T LEAK. bpa free. $4.00. 6) this little gal is my friends daughter, she makes me feel like a million bucks. love her SOOO much! here we are at her preschool graduation!
i've got some confessing to do:

after i was on gleevec for a week, i went into my doc appointment for blood work and a weigh in. sort of how wrestlers are really careful with their weight, we have to be careful with my weight on the gleevec. appaaaaarently there are some possible deadly side effects of in which is severe fluid retention. click here to read about all side effects. confession; i gained 5 lbs in a week. my excuse is that it was the day after easter...of course there's an extra 5 lbs, duh. well, the docs didn't like my reasoning so they made me go off of gleevec for a few (6) days. they wanted me to start from scratch and increase my dose at a much slower rate so i would be more likely to tolerate it.
last week i tried to move up to 4 pills a day (after i was only taking 2 a day)...oh boy. i felt like i got ran over by a train. or chuck norris. gleevec also causes bone aches and muscle aches... onTOP of my already aching muscles and nerves. i seriously felt like a 90 year old who got attacked by something that showed no mercy on her. it was terrible. so i moved down to 3 pills.
also, i guess gleevec is a chemo pill. wierd. i didnt know this when i started the trail, i just thought gleevec was like a chemo. i wanted to be sure so i emailed indiana and asked straight up 'am i on cheeemo?' sure enough. i am. super weird. i wont loose my hair from this form of it, yippee! buuuut the gleevec may kill me. sweet right? i don't think it will, so only if you heard my tone. i am being sarcastic. but still....its a bit freaky.
i wanted to share these little details with you guys sooner, but i just wanted to make sure that i was able to tolerate the gleevec before i said anything. indianna said that if i cant maintain my weight then i wont be able to continue the trial. when they told me this my heart sank. i felt like i was allergic to my "armour". its hard to realize that no matter how tuff i think i am...not only are my tumors out of my control, my toleration to gleevec is as well. we are all here only by the mercy of God. i am thankful for my constant reminder of how i am in His hands, even though that reality also shows the depth of my weakness.
so anyways, i bought a scale and a water bottle and stopped pouring salt on my food. i'm drinking at least 2 liters of water a day and peeing every 20 minutes, this combined with my nausea and basically pregnant without ya know, that small detail of a baby.

Sunday, May 22, 2011

i got a blogger award!

ladies and gentleman..... I GOT A BLOGGER AWARD! yippeee!

thanks to April who thought I would be worthy of such an award! i ALSO just received it from my favorite gal pal Noi (noelle)!

what is the award you ask? obviously it is the Stylish blogger award!

rules of this award:

thank the one(s) who gave me the award.
list 7 random facts about myself.

pass on the award!

thank you april and noi for passing this award on to me! it means a lot!

7 random facts about me?

1) i have to drink through a straw. preferably bending straws. why? oh because i dribble on myself without straws, bang my teeth on the glass or/and ice falls into my face, its just bad. so, i carry straws with me...and ALWAYS ask for a straw at restaurants. why do you think it is that they NEVER give you a straw when you just order water, but you nearly always get a straw when you order a soda? drives me NUTS...and please, hold the lemon. you touched that with your fingers.

2) my big toes don't bend in the middle. ouch! don't try to bend them...they don't even have a joint.

3) I LOVE spanish guitar music!! and antonio banderas.... have you seeeeen desperado? click here to listen to some spanish guitar music...the theme song to desperado. i LOVE it.
4) i have a reverse mullet. its from surgery last year. they removed 9 tumors(?) from my head...its getting better. but yea its there...and its awesome.

5) i love to create! no matter what shape or form that is...i LOVE it. i've written songs. books. poems. i have crafted numerous things. i also love to cook and lucky for me, my faithful boyfriend will eat whatever i make, good or bad. =)

6) i have a problem with moderation. sometimes i don't know when to stop. i obsess. i am all or nothing. either my house is spic and span or its a mess. and if i know i cant do something perfect, i don't try at all. definite moderation/perfectionist problem. life problem. right now, my house is a mess....i would take a picture and show you but i am too ashamed. its bad. (im sooo cleaning after this post)

7) i have (semi)secretly wanted to model for a while now. it will never happen. but i have played around with the idea, was signed with an agency for a extreeeeeemly short while. why not? first of all...i am not tall enough for it, i'm only 5'71/2. secondly, my moderation problem. i would obsess over it. i would make working out and my eating habits rule me, and i definitely don't want to live life with THAT as my main focus. so instead i will live vicariously through the gals on america's next top model. here's a couple shots i have had.

i had a fun time trying to think of the random-est of facts for you. i hope that they didn't bore you!

so now who do i pass on the stylish blogger award to? thats EASY!

disclosure: i think 'style' comes in more shapes than fashion.

1) i would have to say michelle's blog is the blog that inspires me most. a few of her friends put it together for her december of 2010 when michelle was diagnosed with stage 3 ovarian cancer. michelle was only 20 years old when she was diagnosed. this blog was created to help raise money for michelles medical bills and also to encourage her and her family through the road that was and still is before them. this blog has touched my heart and i am sure it will touch yours as well.

2) addi cakes! addi is a dear friend of mine who writes about the beauty that life has to offer. from fashion, to her artwork, travels with family, new recipe's and all of the above. this is a look into life through the eyes of someone recovering from an eating disorder as she takes a step back and looks at life in a whole new way. i am sooo greatful to have her in my life.

3) jessica's blog is a blog that i SOOO aspire to be like! it is so organized. its perfect. she even blogs daily! in the early morning!! oh how i wish i could be more dedicated like her. i have commitment issues i think. anyways, jessica's blog is so much fun to read. we have a mutual friend and jessica used to serve me my coffee at starbucks! this blog is about, as her subtitle reads 'where personal life meets style'. she talks about some daily happenings, whats on her mind, and what she wore that day! simple stuff...but written in a way that is quirky and addicting. this blog makes you happy. daily.

4) megan would also have to be a recipient of this award. she always makes me laugh. if we are hanging out, texting or talkin on the phone...this woman is entertaining. i love reading her blog and hearing her views on life. she is a wife, a mom with a bun in the oven and she is a dear friend to me. this my friends, is the woman who makes my tears floooow when she sings. her voice is powerful her heart is huge and her love is thick. love her.

5) kristi and 3 of her 5 children have neurofibromatosis. she writes about herself and her children's life with NF. she is very vulnerable and informative with what it is like to have NF. she is also an author! something that i aspire to be. i love her love and dedication to her children.

6) last but most CERTAINLY not least. bailey, bailey is one of krisi's (above) daughters who has NF and has just started chemo nearly 2 months ago to help shrink a tumor in her brain. this is a look into the life of a child with NF. these are HER posts. and HER thoughts. she is so very wise, and is so blessed to have such an amazing family. take a look, her positive attitude and her perspective of her circumstance should make you really step back and look at your life more humbly and with more appreciation.

thanks again april and noi for the award. i had a lot of fun giving it back to the world of bloggers.

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.

Tuesday, May 10, 2011

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?

Monday, May 2, 2011

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 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 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 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.