Sunday, March 27, 2011

beauty for ashes

picture 1)this weekend was simply fabulous. i stayed at home both saterday and sunday. friday night my boyfriend and i went grocery shopping so we could eat healthy as we lounged around for 2 days. well....when i was selecting cheese, i hear "one dollar?! no way! please no!" eli was hovering over the fridge that you see below with my double thumbs up. yes my friends. each of those were a dollar. it didn't even stop there. there was another one of these cases at the front of the store. we flipped. we only spent 10 dollars on sweets. yes, but unfortunately that means we bought 10 box's (tubs) of ice cream/Popsicle treats. picture 2) one of my true loves. believe it or not i'm not that into ice cream/Popsicles. i like chips. carby things. but i sure do love orange juice (with pulp) its liquid candy. picture 3) is me with my dear friend addi. this was a few weeks ago at a fundraiser my amazing boyfriend put on for his job. i love addi and eli oh so much. this was a wonderful night. picture 4) back to this weekend of laziness and another thing i love. COFFEE. i used this espresso machine-ish thing quite a few times this weekend. drinking one from it now, tasty. Photobucket Photobucket Photobucket Photobucket something that i am so greatful for is optimism. God has prooven Himself to me time and time again, that i would be the biggest fool ever to not let go of my understanding and trust in God. not because God will give you a hunky dory life when you trust Him; but He will help me through hardship and allow me to see something irriplacable and beautiful that came out of it (whatver it is), always. one of my favorite songs is called "Beauty for Ashes" here are the lyrics: He gives beauty for ashes, Strength for fear Gladness for mourning, Peace for despair When sorrow seems to surround you When suffering hangs heavy oer your head Know that tomorrow brings Wholeness and healing God knows your need Just believe what He said He gives beauty for ashes Strength for fear Gladness for mourning Peace for despair When what youve done keeps you from moving on When fear wants to make itself at home in your heart Know that forgiveness brings Wholeness and healing God knows your need Just believe what He said He gives beauty for ashes Strength for fear Gladness for mourning Peace for despair I once was lost but God has found me Though I was bound Ive been set free Ive been made righteous in His sight A display of His splendor all can see He gives beauty for ashes Strength for fear Gladness for mourning Peace for despair i think everyone has certain things that drive them a little crazy. for pain drives me crazy. yes, my tumors do. but since i have chosen to accept them i now face a battle with accepting everything that comes along with them. usually when i am at a certain extremity of pain, there starts a downward spiral of my emotions. i can choose to handle it in two ways. one, i can bite my lip, tough it out and pray for God to distract me. thinking of anything besides MYSELF usually works. OR two, i can allow that pain to consume every part of me. and think 'ow, my back!" (or legs, or arms, or chest...these days its anything and everything) "why do i have to go through this!? why cant i be normal! why do i have to have sooo many?" then my thoughts turn to nasty devils and they say: "this isn't ever going to stop kelly, its just going to get worse. how are you going to handle it then?" "your going to be in a wheel chair and have a tracheotomy one day!" oh those thoughts. those terrible tormenting thoughts. don't we all have tormenting thoughts? when i choose to deal with pain with option number two, i feel helpless which makes me scared which makes me feel trapped which makes me angry. instead of dealing with these feelings properly, i am won over by the pity party clan and i hang out with debby downer and harry hardluck. there is a difference between being optimistic than being happy about a situation. i need to remind myself of that. i am a very optimistic person. you know the saying 'the grass is greener on the other side'? well, i say bologna! the grass is greener when you smile. if God can make beauty for ashes, why cant we? we just have to see it through His eyes. i tend to get on peoples nerves when they say something negative and i say "well at least its beautiful out today", or "at least only one person has treated you badly today". their is absolutely always a positive twist to anything that you are going through. focus on the positive, i know you can find it. if you just wanna throw yourself a pity party for a while, go for it. i think that's healthy actually. i swear i have my own pity party pool, with 'why me' and 'i cant' floaty toys waiting for me. just don't throw your party for too long. know when you've had enough and when you are ready to move forward. give yourself enough love and credit to move forward again. i only started to move forward in my life when: 1) i believed i was lovable (to God, myself, and all of my friends and family) 2) i believed that despite my circumstances i was good enough to succeed. (believing in Gods love helped me get to this point) 3) when the yearning for joy and love outweighed my fear for it. He gives beauty for ashes. i swear to you all, i am living proof. "Just believe what He says"... im so greatful for you guys, i cant say it enough. thank you for being an amazing support system for me, i only wish i could give you guys what you are giving me. thank you for reading! let me know if you want to hear about anything, or if i can help you in any way.... until next time...(im trying to move towards 2 posts a week) i appologize about the horrible paragraph wont let me fix it =( im terrible with technology.

Saturday, March 19, 2011

an inch of faith

i am going to try to do as many picture postings as possible to show you my weekly happenings...even if its insainly random. so prepare yourself. you may start to see some nutty things...these are harmless though.
* pic 1) im with some friends at a mexican resteraunt to celebrate a friends birthday. birthday girl is in the hat. 2) super cold day, headed to starbucks to write and stuff. 3) with amanda her. 4) Rudy BOOOOTY about to throw a beat down on my tumors.

this whole blog started a few months back because i wanted a specific place to go where i can talk about the 'tumor-ey side of me'. i have another blog 'and so i wrote' that i was trying to be frequent at writing in....and i was failing miserably. there was this part of me that was itching to write solely about my tumors. i thought it sounded kind of morbid and depressing though. why would any body want to read about someone else' do i say...disease? (hate calling it a disease) why would any body read someone else's highs and lows and chaotic roller coaster emotions?
well... i started writing anyways. and? i had no idea how much of a burden i was carrying around with me until i started to let these emotions out. i had no clue how much i felt like i HAD to be strong. put on a good front for those who knew about my tumors and just say 'God is good and He is taking care of me". then some days (usually the ones where i would have a ton of today) the reality of my tumors would hit me in the face and it would eat me up all day. since i didn't have an 'outlet' the emotions would come out side ways through irrational tempers. or just being completely emotionally unavailable. like a zombie. my poor boyfriend. i am not saying that i have this whole 'rationally handling over a thousand tumor thing' down. not at all. but i feel like i have found my purpose in this. and maybe my dream is really unfolding before my eyes?
all i have ever wanted to do...well, besides being a brain surgeon, ballerina, pro ice skater, acrobat in a circus, drummer, stunt devil, mcdonalds worker, architect, actress, singer, to be an author and a motivational speaker. i never EVER EVER EVER thought that my dream would come true. NEVER thought that i would be "one of the lucky ones" that got to live their dreams.
WELL, do you know what? once i gave an inch of faith. God gave me a mile. and i tell ya, i'm foolish. because i keep on just giving inches these past couple weeks. and he keeps repaying me more than i deserve. when will i LEARN?
i am going to be traveling to san fran to speak at a women's retreat in a couple months. no date set, but its happening! can you believe it? i am so excited and i am terrrrriiiified! but I HAVE to trust this. i have to do it because in that mile that He gave me, it included this opportunity. its my dream right? so i have to do it. "surely it will never happen if i never try"(thats my modo) so here it is before me, i'm taking it! i have never spoken in front of more than a group of girls where we all shared our testimony, or when i co-led a bible study for an extremely short time, or my mini bible study i had to lead for a class assignment at bible college. here goes nothing right? just my dream... =) i will keep you updated on that whole speaking scenario as i find out more details.
i didn't know how much i was holding in, how much i was trying to 'handle' on my own, until i started to let it out. writing is my outlet...and from this blog, i benefit in releasing my burdens (even slightly) just simply by expressing them. and the best part of this is, i gain friends and a support group. i love getting your emails and comments. your words are so encouraging. i have never felt like i had more purpose than i do now. the more that i say, the more i express myself....the more benefit that happens. thank you everyone for being so wonderful to me.

my point of today's blog is

1) YOU ALL have been one of the best things that has ever happened to me and i never would have 'gotten' you guys if i didn't step out in faith and start writing this blog.
2) believe in your dreams, we have them for a reason. they are instilled in us. do them. even though its like you are walking blindly, DO IT. if you must, start small...just start. God will repay you ten fold.

ps. i am slowly going to be easing back into writing in my non tumor-ey blog as well. if you want to keep your eyes peeled =)

Sunday, March 13, 2011

a BIG week...

* a life with a good measurement of love and friends...
i am so blessed to have the support of those who are taking the stand with me to conquer my life with or with out tumors. i have plenty of reason to be filled with joy.
here is maybe my new favorite picture of me and my man at a fundraiser last weekend. the other, is a gal i've known for years....and we just discovered we lived in the same town! her whole family has blessed me beyond i could ever try to explain. here we are showing tumors our teeth...and fists.

what a week it has been! a week ago friday i was headed out to ashland (a mini portland or san-fran) with a couple girlfriends to celebrate me being accepted into the clinical trial gleevec. i received a phone call from a girlfriend telling me not only did she email news stations as well as our local news paper about my "story" but that within a couple hours, 2 of these have already contacted her eager to get my contact info. i was shaking in my boots...or should i say my new high heels, perfectly appropriate for the occasion.
my heart pounded through my clothing and i wanted to scream from fear and astonishment. "its just me" i thought to myself. you know, i've lived with myself my whole life, its a weird feeling when the 'media' (are they called the media?) wants to talk with you and spread your story. i have been introverted regarding my tumors up until january, so being "open" has now taken itself to a new level. the girls i was with as well as my friend on the phone responsible for this nuts-ness. convinced me that even though i was terrified to be in front of a camera that i had to take this opportunity.
i agreed.
sunday rolled on in....i was working at a coffee shop (as i do on a random sunday here and there) and we got a call from ANOTHER tv station...they wanted to interview me in 2 hours. i trembled. my whole body was in a panic. literally. my whole body quivered and i couldn't stop.
you see i have this desire to speak, to tell people how much God is in control of your life, and how nothing at all will dictate what He has in store for you (if you walk forward). how your dreams have a purpose, how nothing can stop His love, His divine power and hand over your life. thinking about sharing this i get so excited and amped up. however i am terrified to be in front of a camera, i am terrified to speak in front of a crowd or small group. i know its coming. and i know i have to conquer this. the enemy....oh how he wants me to turn into a mouse and let fear rule my life. and he knows where God wants me...and that is where he places my fear. i'm not gonna let fear rule me anymore.
so i get permission to leave work early, from the assistant manager (which is the one that contacted the news and paper). i pull out of the driveway and start heading home to get ready for this. im finally feeling a little better about the interview. i am mentally preparing what i am going to say. just when i start to feel good and feel like "yea, i deserve this" i am maybe a mile from the coffee shop, and putt putt putt.....steering wheel locks up and......i run out of gas. this was literally perfect. i needed this. i waited for a wonderfully gracious co-workers mom to come bring me gas. i wasn't angry at all, it was a great way for me to be put back in my place....that i am still only human. i am normal. i am not special. i don't 'deserve' anything.
the interview didn't even happen that day, the guy that was going to do the interview called in sick. it happened the next morning. the anticipation of seeing myself on tv made my heart pound so fast that i actually got queezy. i of course, was at work and couldn't watch it till late that night. but the responses that i received from some text messages made my heart rest a little.
the next day i had another interview with a different station. then a couple days later with a news paper. this past week was very unexpected. and for me having to talk about my tumors and share it with soo many people kind of put knots all over in my stomach. i want to be vulnerable and honest, but at the same time its almost like i have to put on my strong face in order to talk about it. notice how i don't blog daily? it is so hard for me to be strong in this. its a daily battle. it is a daily choice. this week i had to be strong enough to talk about it yet vulnerable enough to be honest. giving me a glimpse into the life that i believe i am made for, to be a motivational speaker. how unprepared am i?
i am sooo thankful, please don't get me wrong. however it was an exhausting week. i slept for 12 hours last night and the night before. it was amazing. haha! crazy sleep. amazing sleep. weird weird dreams.
thank you to all of you. i realized in one of my interviews that YOU as well as my friends and family are my support group. I love that i can be open and honest and you will be here for me through it all. a couple things that were solidified in my heart this week is that even though it is hard to be real, to be vulnerable, i think that is where my strength is. strength isn't in the walls that we build up around our hearts or whatever is really going on behind the surface. strength is in the tears that fall. strength is in courage. david beat Goliath with just himself and a rock and sling. we can do anything with God behind us. just us, no outward armour. just God.
this life before me is unknown. it scares me, but i know God is with me. i know that He loves me and i will be constantly searching for where God wants me and what He wants me to do. it will all be worth it not only in the end, but even as i go through it because if i live my life for Him I realize how the rest is just details. no matter what those details are.

Saturday, March 5, 2011

...Hello Gleevec...

Id like to make a HUGE announcement...
i got accepted into a clinical trial to take 'gleevec'!!

i am 1 in 20 patients that are going to be a part of this, it is open world wide, though i don't think anyone from out of this continent is in yet. i feel sooo incredibly lucky. i can not help but cry with what this means for me! you guys, this could cause my tumors to shrink! please check out this link if you'd like

gleevec is a drug that has been around for 15+ years for patients with leukemia and other cancers. a couple years ago they discovered that it can help plexiform tumors in nf1 patients, especially with tumors obstructing breathing apparatuses! um, see ya later scranton strangler and big bertha!! maybe i will get my vocal cord back?!?! Then i can start giving Jewel lessons again. (ha, totally kidding by the way...obviously)

i don't really know what to say except for, "praise the Lord"! could it really be that this is happening? we dont know how my body is going to take to gleevec. there is a chance that nothing at all will change. i do know that through it all i will tell you guys all about it. i will be flying to Indiana next month to start this journey. i will be getting a lot of treatment for free. i will have to pay for travel and labs (lots and lots of labs...good thing my veins are nuts-o and stick way the heck out there, nurses always compliment my veins...) the reason why i need to have all these labs is to make sure that my vital organs are handling gleevec ok. i don't have to move to Indiana or anything, i only have to fly out twice a year for this 2 year study. they will only keep me on the study for 2 years if they are seeing any benefit from it and if i am not having any severe side effects. i am hoping for great things, i am also hoping that i don't have to go up to see my specialists in Seattle during this, nothing wrong with them...i just want as little of doctors in my life as possible. =)

to clear things up, the Indiana doctors will only be seeing me for gleevec and not for general check up for my nuerofibromatosis. so i am unsure if i am going to have to be going to Seattle still. i may have to at least go once a year?

i hope that you all get to see new mri's in 6 months showing how much my tumors have shrunk.
i want to incorperate this clinical trial into my blog, telling you how it is making me feel, and my side effects, all things.

thank you all for your support and love. it is becuase of all of you and my loving God that i even have the courage to face this road before me. please never hesitate to ask me questions about anything. i am an open book. much love from the deepest of my heart to all of you! will get back to you soon.

p.s. please make sure to check out my remodeled blog! i am still getting more things together for it, but i am so happy i have figured out to do some of this stuff!