Gleevec is working!!!

pic 1) poor little baby. after the hit, we pulled over a few times to check on the car. this time a gas station employee pulled off the headlight that was dangling...(umm thank you?) and some other things. pic 2) you know your not in your small town anymore when horses have nicer shoes than any of your own. look at them sparkle! pic 3) i have never had a nurse have problems with drawing blood from my huge veins, but apparently they were spasming and that makes it quite difficult and quite painful. pic 4) me getting my lung capacity and all sorts of stuff checked out in the pulmonary department pic 5) my doctor and i! seriously one of the nicest guys ever. by FAR the nicest doctor i've ever seen for my nf. he told me i shine. made me get teary eyed. so so sweet. pic 4)



hellooo every one! my apologies to the moon and back for me not writing sooner. this december was hands down, the busiest december (and first part of the new year) i've ever had in my life. i will tell you guys the biggest detail of my busy-ness the next blog post...so hopefully you guys will forgive my delay when you hear why i've been sooooo MIA.

so let me just get straight to the point. GOOD NEWS! i have tumor shrinkage!! (as you hopefully picked up from the blog title) at the time of the follow up appointment in indianna they only measured 3 of my tumors that are in my neck, and 2 of them had shrunk! one shrunk 7 mm! that's almost half of an inch!

i still haven't heard the results of the other tumors, which i hope i wont have to wait too much longer for. but i am so thankful that this is working on at least some of these bad boys. i almost cant believe it. their is a chance i will start a different trial this summer. still the same sort of thing through the same university, taking a chemo pill. but this other drug would help more of my tumors. gleevec, for some complex reason usually just helps tumors that obstruct breathing apparatuses. which of course, i have plenty of. but this other drug helps all tumors anywhere on the body. yahooooo! i would be so grateful if they allowed me to be on the next trial when they start it.

oh yea, coming back from indianna...i hit a deer on the freeway when we were driving home from the airport. i was going around 60 mph. somehow. my mother and i were perfectly fine. the deer...not so much. i am so glad i didn't swerve. there he was, and there we were coming around a turn and i said "ok, here we go" held the steering wheel tight, and boom. so many details of the wreck could have made it so much worse. but how we did it, it was the perfect way to hit a deer on the freeway. accidents like that are easily fatal. we had angels....and so did the car that took the hit like a champ.

well how was your year? how was 2011 for YOU? what are you working to accomplish in 2012? stay tuned for my reflection on 2011 to be followed by my hopes for 2012.

back in indy

fun times leading up to doc appointments...
1) beautiful view at the 'top of the mark' in sanfran. 2) eli and i at its look out point. 3) more night lights. 4&5) loving these houses! 6) my 'ol pal...a bit tattered now. 7) jiyun!! love this girl!


hey guys, guess what? i'm back in indianna for my follow up to see if chemo pill 'gleevec' is shrinking my tumors. tomorrow is the appointment(s), BIG DAY!
my trip began about 5 days ago. drove down to SanFran and spent some time with eli and his family. so much fun. i was dying with all of the beautifully architectured homes down town. and for the cherry on top, i made sure my phone had the opening song to the show 'full house' on repeat. still have the song stuck in my head.
landed here in indy with my mom yesterday evening and laid low in our hotel room for the night. today was our sunday funday and we spent some time downtown with my friend from bible college.
i have had a lot of wonderful distractions keeping me from going crazy with the pending news of this appointment and i am soo thankful for that. before i left my hometown i was so nervous. but now i feel tuff. its like right before you start a race how your nervous, but once you start, your adrenalin starts pumping and you feel strong and unstoppable. its all a mental battle. its all about perspective.

don't feel like you have to do this on your own. whatever it is. be open and vulnerable. open your hands, you will be surprised how many people will hold them and walk with you. i'm so glad i did.

'life without limits'

pic 1) nick vujicic speaking last weekend 10 miles from my house! pic 2) amanda and i sitting front row getting ready to hear nick on the first night. pic 3) second time nick spoke i got to meet him! amazing amazing man. and what is that on his foot you ask? oh thats a tumor hater bracelet!



last christmas my mom got me a book called 'life without limits' by nick vujicic. once i picked this book up, i could not put it down. this guy is amazing. he was born without arms or legs but has decided to accept himself as he is and to believe that God has a plan for him. in this book he talks about his journey in accepting himself, his ups and downs and to where he is now; a world renowned motivational speaker but most of all, living a life without limits.

well, God being the awesome guy He is...sent nick to my neck of the woods last weekend! when i found out i couldn't stop saying "SHUT UP!" i was completely baffled that i was going to get to see this guy that has turned my world around. he has proved to me that i have every reason to believe in myself. i want to be an author. i want to be a motivational speaker. i want to have a non profit to help others in medical need. i want to give people reason to believe in themselves and to love themselves as they are. to help them trust in Gods love for them and love themselves fully. since reading his book, i have found the courage to act on these desires and take steps towards them. if a man without arms or legs can do all these things, why on earth couldn't i? tumors? pain? HA! ridiculous!

after listening to nick speak last weekend, he has made me reevaluate myself and my tumors yet again. the invisibility of my disorder used to bother me. it has stood in the way of me feeling completely understood by my peers and loved ones. for a long time it upset me that i didn't feel fully understood, validated or trusted when i would be crying in pain or fear of my future. well now i realize that frustration of mine was foolish. why should i care so much about people understanding my pain and the threats my tumors have over me? i wanted people to understand so badly that it actually kept me from moving forward in certain parts of my life and growing in certain areas of my heart. nick has a very visible defect. but he doesn't act like a man with no arms or legs. i actually forgot about his lack of wrists when i was planning on giving him a tumor hater bracelet. as i put it around his foot i remembered him telling us all that he has a pair of shoes in his closet. he doesn't want to be treated any different than you or i. it doesn't even seem like he thinks he is any different. so me being frustrated cuz i don't look different enough is just completely ridiculous to me now.

here are a couple of things nick said that really moved me;
"what good are arms and legs if you don't know what to do with them?"
"more than arms or legs i want peace."

we are so much more than what we lack. our 'lacks' are only as powerful as we allow them to be. it is so easy to focus on what we don't have and allow it to dictate our happiness and our success. we must reach a point where our desire to live our dream is stronger than our fear of never getting there. my life is up to me, i refuse to plan my life around my lacks. but instead i will hope in my future because i believe the promises of God. i believe He has given me my 'lacks' as an irreplaceable tool in helping me live my dream life without limits.

i made the cover of people magazine!?

me with the magazine!! and thats my little bandaged up head by kim's right knee!! me and a kardashian on a cover together? haha!

"my summer was great, you know... the usual. work time and lake time, oh and i was in south africa's people magazine and i made the cover!"

if i think about it, a person having over a thousand tumors definitely DOES sound unusual. especially if the person looks completely non tumor-ey. but i never thought it would be getting me into magazines. weird huh? ME! HA! so weird.

thank you so much to double vision media for sharing my story and helping raise awareness to this disorder. and thank you south africa people magazine for showing me love and supporting me through this journey by telling my story.

its amazing what happens when you start to be real to yourself, your friends and family. starting this blog has helped me through majorly difficult times. i feel supported not only by my community, but literally from people all over the world. i don't feel alone in this anymore. i don't feel like i have to hide from my fear, but those fears are accepted by every one of you. i grew up hiding from my emotions. not crying because i thought that meant you were allowing yourself to be weaker than your circumstance. but with your help, i am learning that fear is ok. that it doesn't mean that i am weak. so i want to say thank you to all of you as well, your support has opened my eyes to a much more hopeful journey ahead of me.

this week i feel renewed. instead of feeling like a victim, i feel like a true survivor. i feel like i've had battle after battle on top of battles in my life. so in my mind i have had that survival mode thing going on. 'don't be a baby, toughen up, accept the pain.' this mind set completely helped me being a distant runner when i was growing up. oh my gosh, talk about pain! but i loved it. i actually loved the pain, i loved improving. every single race i got a new pr (personal record) which makes me sad in a way because i never got to discover how good i was or could have been before i had to quit all together because of the pain caused by my tumors (didn't know it was tumors at the time though, since i wasn't diagnosed until after high school). i never knew how much strength and endurance i had in me as a runner. i paced myself faster every time, and every time i would improve, but i never hit my peak because i was scared to test my limits. that is exactly how i am in life. maybe that's how most of us are. capable of so much but we don't want to believe in our own greatness. so we don't improve at all. we accept where we are at because it is comfortable. or we only allow small bits of improvement. never fully let go and dive in to what feels 100% authentically US, because what? a million reasons! how will we maintain this greatness? what if we cant handle it? what if you cant handle the pressure that your greatness will bring? well, would you rather handle being your mediocre your whole life and never just completely let your fears go?

one of my top favorite quotes EVER is

"our deepest fear is not that we are inadequate. our deepest fear is that we are powerful beyond measure. it is our light, not our darkness that most frightens us. we ask ourselves, who am I to be brilliant, gorgeous, talented, fabulous? actually, who are you not to be? you are a child of God. your playing small does not serve the world. there is nothing enlightened about shrinking so that other people wont feel insecure around you. we are all meant to shine, as children do. we were born to make manifest the glory of God that is within us. its not just in some of us, its in everyone. and as we let our own light shine, we unconsciously give other people permission to do the same. as we are liberated from our own fear, our presence automatically liberates others."

-Marianne Williamson

this is me to a 'T'. even though i know this quote is totally true, i have so much fear it is ridiculous. but i just cant live my mediocre life, i have to test my boundaries. so slowly but surely i have been 'increasing my pace' as often as i can. re-adjusting my thoughts, daily and even hourly. and as i am making steps towards my dreams, i am tapping into my inner distant runner mindset and telling myself to dig, push, breath!!

i will not turn over on my back and let my circumstances get the best of me and you shouldn't either. take steps towards your dreams and get out of your comfort zone. choose to believe in your own greatness.

power of a will

i get by with a little help from my friends, family and my man...
pic 1-3) my birthday celbrations! pic 5) tea party! pic 6) golfing with my mom, brother and eli. pic 7) poker night at my parents. eli and i turned gangster.




sorry i haven't written in a LONG time. when i write, i cant hide from my feelings; my heart is all over these keys. so i have been at a stand still, not writing because i am struggling and i don't want to go deeper into that darkness. i have been scared of my life lately. the fear i have is so deep and dark it's extremely difficult to write and vulnerably go there because i don't know if i will be able to come out of that dark place after i click "publish post". my tumors are freaking me out. in december i fly back to indianna to get some follow up exams to see if my tumors have shrunk after being on gleevec for 6 months, and just looking into airfare and planning my trip is taking a toll on me. what if gleevec isnt working? where will my tumors take me besides a life full of pain? how will i handle the pain as it gets even worse? what other nerves are going to become paralyzed? will i be able to handle it? these questions amongst a million others are killing me. the unknown is a bully, and i am its prey.

even though i know the truth:

i know i am in God's hands. i know that His mercy and grace are sufficient for anything we will ever go through. i know that everything is about perspective. i know that the grass is not greener on the other side. i know that i am made perfectly with each of my tumors. i know that my home is in heaven.

...lately i am having a hard time believing these things and allowing my heart to be held by them. the other day i found a quote that is now sitting at my desk at work, i want to be reminded of it daily.

"i assess the power of a will by how much resistance,

pain, torture it endures

and knows how to turn to its advantage."

-Friedrich Nietzsche

i know i have a strong will. but man alive, i need the Lords mercy these days.

spreading her love, one rose at a time.

my apologies for waiting 2 weeks to get back to you with what i did for the 'anniversary' of my sister emily's death this year. for some reason i have been pushing it aside...i still don't really like to talk about it i guess? but i am doing my best to change all of my thoughts towards this subject.
instead of hanging my head and crying all day on september 17th, i decided to grab hold of my emotions. i wanted to appreciate my life, especially on this day. i wanted to live more fully. instead of dreading that day and hating every second of it, i wanted to make it a day of LOVE and give the day a whole new meaning.

so this year eli and i drove up to crater lake. crater lake is an absolutely stunning sight. we went to a couple look out points soaked up the beauty that was filling every single visual frame around us. THEN we went and got our grub on. oh nelly. this was some amazing food. picture a huge colonial style mansion on the edge of a cliff that looked over crater lake. yea...that was the restaurant/hotel. it was ridiculous.

after dinner, we drove out to another look out point that had the prettiest sunset id ever seen. then we dropped off emily's rose at a beautiful lookout point and journeyed back home.

it was so good for me to grab a hold of my life that day and intentionally do things that would give me some of the greatest memories. it turned out being one of the best days of my life. leaving a rose for emily is going to be a new tradition. i will do this on random days, to strangers, in empty seats...anytime anywhere, no rules at all... i want to share the love and beauty that she gave to me, with the rest of the world one rose at a time.

worse than any tumor pain

pic 1) right before we left for the football game sep-17-99. pic 2) emily and i dressed at sumo wrestlers, such a fun time. pic 3) us at a blow hole in maui, so much fun! pic 4) my favorite picture of the two of us. pic 5) my beautiful sister before she left for a dance her sophomore year.




for those of you who don't know, my sister died in a car accident 12 years ago today. i went through 10 years of denying the pain. finally in 2010 i began the grieving process, it hurt so bad i have actually pushed it away again. since most of you have started reading my blog only recently, i wanted to share with you this part of my life from a post that i wrote last year on this 'anniversary' in my old blog titled 'and so i wrote'...

sep-17-2010
"i couldn't fall asleep last night. my mind was racing and time kept sticking its tongue out at me. tick tock tick tock. sooner or later, midnight would strike and again it would be September 17th. i hate that date with a fiery passion. i pretend that it is easy to look on the bright side of the story, but deep down it fills me with anguish and battles that i never picked up a sword to fight. that date, dare i say it again is the day that my older sister died. here i am 11 years later and it feels just as rotten as the first year the date hit again. the pain of it is equivalent to abandonment. she was more than my sister. she was my leader, she was the one i went to for it all. not my mom or dad, it was her. all my identity, confidence, sense of worth was from her. nobody could give me those things like she could. 11 years ago today, i had my life all lined up before me. even now, this time of day, she was still here.
i remember so clearly, thank you Lord for your gift you gave me. as i was rushing down to the locker room to get ready for practice, i saw her walking into the parking lot with her friend kylie. that very usual circumstance turned into one of the biggest most valued moments in my life, for as i walked through the doors of the locker room, a very audible voice said to me "if that is the last time you see your sister, will you be satisfied?" i almost ignored it, because i didn't know what it was and i was 45 minutes late to practice.... but then i felt a tug in my gut. i knew i couldn't ignore it. i ran back upstairs and watched her walk by the spirit rock swinging her water bottle in one hand and using the other to gesture whatever it was that she was talking about. i soaked in all the details and watched her disappear into the parking lot. then i ran back downstairs to the locker room changed my clothes and went to practice. the whole time during practice...i tried to stay positive and not let myself think that i was actually never gonna see her again. i kept looking at my watch, stomping on fallen leaves and singing "all the leaves are brown and the sky is grey"...i looked at my watch again 4:17........and then i really belted it out, i was soo afraid. "CALIFORNIA DREAMIN ON SUCH A WINTERS DAAAAAY"..... 4:20. i knew, i actually knew what was happening right then, i just didn't want to believe it. i tried to put it in the back of my mind and think positive. we get back to the school from our run and her volleyball partner came up to me and said "WHERE is emily?" initially i thought she was being stupid and skipped practice, but then it crept into my mind again.....she's gone.
there was a football game that night so a few of us cross country gals went and got 'made up' with school spirit. i tried to ignore my gut feeling and decided that my sister WAS gonna be at the game....and everything was gonna be normal. as i painted paw prints on my (now) best friend 'noi's' arms all i kept thinking was 'tonight i'm finding out emily is dead' though it sounded bogus because who thinks like that? i tried to keep it to myself.
we get to the game, emily's 2 best friends (emily p. and heather) were hugging each other and crying. I run up to them....'whats wrong? is it emily? where is emily?' they didn't know, she was supposed to meet them there. they were afraid of this same thing i was. we decide to call my parents and tell them that we don't know where emily was; that she didn't show up to volleyball practice and now she isn't even at the game. we call, 'hi mom, its me...kelly. (i used to have to distinguish which daughter i was) we don't know where emily is' on the other end of the line, my mom says the 3 words that still ring painfully in my ears 'we found her'. my heart drops like a thousand pounds. shes dead. i knew it. i had 1 ounce of faith that she was still alive. i gave the phone to her friend emily p. or heather, i don't even remember i think the other one was holding me up. we were to meet my parents in the parking lot in 15 minutes. we sat at the bleachers on the bottom row. i laid in one of emilys friends' lap. sobbing. i kept saying 'she's dead. she's dead. i know it, i know it.' nothing mattered to me at all, except needing to know the truth. and to have the truth be that she was alive. 10 minutes later we walk to the parking lot, like walking to your killer and begging him not to shoot you. there we stood waiting for my parents ...tick tock tick tock.... finally, there they were. a pair of headlights stopped and my mom got out of the back seat, she stood and looked at us, emily's 2 best friends of 10 years, and me....what could she say? how would you begin? all i needed was just the look on her face. and then, she just shook her head."NO, NO NO!!!!" i screamed. i ran past my mom, Jim and brother which were now all outside this strange car and i jumped into the back seat...laid out across it all. i screamed some more. i hit the seats, i grabbed my stomach with my knees up to my chest, it felt like someone was ripping me apart. my future life flashed before my eyes.....everything i knew, everything i expected. changed. i saw my future brides maids...all lined up. emily, slowly faded out. i saw christmas, sitting around the tree, emily vanished. i saw the finish line at all of my running events, emily vanished. emily vanished from all of my life.
the rest of the night is a blur. they directed us into some office area where we were later joined by most of the rest of the crowd watching the football game. both our cheerleaders and the opponents. principles, coaches, football players...everyone. i cried in a hidden room, kelsey...God bless her never left my side. i couldn't handle hearing the word 'died' i still didn't even know how it happened. i didn't want to know. if someone started saying how, i told them to shut up. i couldn't know yet. after about an hour(?) our pastor drove us to our grandparents house, we still needed to tell them. on our way there i asked how it happened. i pressed my forehead against the cold window and gazed out at some passing flowers as someone told me. "a car accident honey, she was..." i interrupted "ok stop" i said, i wasn't ready for details. we arrived at my grandparents, oh i couldn't bare it....i ran to the bathroom immediately and put my fingers in my ears as hard as i could and hummed to myself. but nothing, could keep me from hearing my grandparents whaling. i can still hear it. we slept on there living room floor that night. when i woke up....i kept my eyes shut....i told myself that when i open them that i was gonna be at home in my bed, with my sister in her bed next to me. open. no. green carpet that smells like grandmas dogs pee. definitely not home. i look in the kitchen and they are reading the headlines of our local paper and talking about her death. headlines read "sully's loss leave broken hearts" artical continues to say: 'car accident' 'at 4:19...died instantly'... too much death. too much of that word, i ran into the back room, i let a few tears fall. i needed to be strong right?"

i'm actually gonna interrupt last years post right there, lets just say i barely cried at all for the ten years to follow regarding her death. it was obviously not a good way to handle it. through complexes, anger, self afflicted pain, crazy ideas what a 'true friend' is, self worth issues and many other ways that this effected me, i survived this brutal loss. today though, i am going to actively treat this day in a whole new manner. i will be sharing with you those details very soon...
i am going to end this post by adding the last paragraph of the post from last year.

"emily used to always wait at the finish line of my cross country meets or my track meets. i was so comforted in getting to that finish line no matter how painful it was to sprint to the end, because she was there waiting to catch me. I fell in her arms every time. then we walked on the grass of the field and she told me how proud of me she was. i know that at the finish line of my life, she will be standing there in heaven, waiting to catch me. she will then walk with me through the beautiful fields of green and tell me again just how proud of me she is.

God taught me a very valuable lesson Sep-17-1999, 'never let a loved one walk away, but if they must go, turn and watch them until the disappear' I'm so glad i did."