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.


  1. Hi, my friend just sent me your artical in the mail-tribune, I have NF-1 as well and live here in Medford. I cried at the part where your friends chipped in, how wonderful to have friends like that. I haven't had a chance to read much of your blog but I'm looking forward to it.

  2. Kelly,

    I am excited that I found your blog via Neurofibromatosis Inc. (you mother). I feel like I am super alone in the STL I am 29 and getting marriedin 6 months. I am just recently starting to have more issues with NF and started to do more research. Its a running history in my family (my grandma, father and two sisters. one nephew, possible one niece- it skipped my two brothers) as a "mild" form. But I am really worried about myself having children and if they will get a more sever form. Just had a CT scan of my stomach due to me complaining in always being in pain. The results were several tumors all over my abdominal area. "Luckily" lightly speaking they are not on any organs so it as recommended not to have them removed unless they get bigger. I hate that everytime a part of my body starts to hurt I go to feel... and there is another tumor. I had a follow up MRI scan and well- there is lesions but they look to be the same as 10 years ago. UBO's as they say.... which makes me giggle in a sense because my fiance always is telling me im a space cadet (side bar). I hope to have more time to really ready what you have written. I feel like I am a lot like you, in the sense that most of my symptoms are internal where they are not visible to the public, well minus the scars and my nice big CAL on my stomach. Stay strong and I will keep in touch.