my haters are my motivators

pictures! i love pictures...
1) its NOI and i! my super hero side kick. so thankful for her love and thankful for her hater-ness. 2) some amazing chicas in my life showin me some more love after my fundraiser. 3) my precious addikins. 4) some powerful haters in my life. my mom and aunt. these ladies hatin on my tumors is fierce. 5) love this woman. she inspired me to speak at my fundraiser. forever grateful. 6) my first time ever speaking. that chair, is where i am meant to be. cant wait to speak again. 7) the starbucks i go to, is absolutely the best. these guys hate hard. 8) SOO blessed by my church. i received such a sweet surprise this weekend. a gift basket full of love. i could never have imagined a church like this one. so blessed.


sometimes its ok to be a hater.
especially when you're a tumor hater.
i have been so insanely blessed this past month by all of you out there who are supporting me. this support comes in so many different forms. but the most important is you guys just bein a 'hater' of my tumors. you 'haters' are my motivators. im loving you all.
we did a fundraiser a couple weeks ago for my medical bills that was so successful. i am so beyond grateful for everybody that was a part of that. i had some incredible donations for the silent auction thanks to the help of my amazing friends Stephanie, Tami, Sue and Carl, Justin and my Aunt Lori and SOOO many others. we had around 100 people all gathered together in a church building to dine on some fine italian cookin while being serenaded by the lovely voices of my friends Alex and Zoe. i feel very encouraged, i feel renewed, i feel inspired. this recovery has taken so much out of me. all of this new pain is exhausting and is wearing on me emotionally. but being a part of an event that was based off of so much LOVE...love for me! for me?! crazy. it was an indescribable feeling. i really cant even put it into words. 
and guess what i did? i sat in front of everybody and i SPOKE. i am terrified of public speaking. but i did it! and it felt right. it felt like i was living my calling. it was surreal. it was just what i needed. i needed to know that i can do that. i needed to know that i can speak in front of others and put together a fundraiser. it confirmed to me THAT is exactly what i was made to do with my life through tumor hater inc. i am now more certain of my calling than ever before.
lately i have been working A TON on tumor hater inc. website is being worked on, came up with a logo, ordered new tee shirts, designing business cards, its so super awesome to see and have this all come together. people always say 'chase after your dreams" but honestly, as you start to chase after your dreams, you realize it isn't a 'chase'. its already there for you, you just have to....start.
i have such a difficult time not allowing fear to control me. my doubt ties my hands behind my back. it blinds me. starting this non profit is a dream. a dream that i almost didn't allow to happen because of self doubt that was wrapped in my inadequacies. as i signed paper work as 'president' of tumor hater inc. i thought i must be crazy and pulling my own leg to think that id actually be capable of doing something like this. i almost didn't follow through on it because looking at the future terrifies me. how will i ever get "there" i thought. but when i stopped focusing on my fears with the future and my inadequacies and only looked at the journey in today, one task at a time, my fears slipped away. i can do this today and that's all i need. that is all we have anyways. the same goes for my fears in regards to my tumors. when i focus on the difficult places that my tumors may take me, i crumble and my strength is destroyed. God has promised strength for the day. so i choose to live where i have His strength.
let me encourage you to just take one step at a time and embrace the strength that is available to you today. let go of tomorrow. live in today. believe in yourself for today. 

"Super Tumor Hater"

photo montage of my new day job. BAM BOOM POW. watch out all you tumors across the lands, i'm out to get you....

lately i have been experiencing a tremendous amount of pain. more pain than i have ever felt before. it seems as though i cant do anything anymore or be in any position that relieves my pain. so frustrating. physical pain has been causing me emotional pain and despair. not an easy combo to handle.
at church the other week, i opted to take the stairs rather than the elevator. as i approached them in a hobble (when in pain i walk like i'm 120 years old) and wearing my neck brace. a man looked at me and said, "no elevator this time huh" i said "no, i think i wanna try the stairs. i think i can do it." and then with so much wisdom wrapped around these words he said. "you know, you don't always have to be the hero." i nodded, he sort of left me speechless. i continued down the stairs replaying those words over and over in my head.
it is surprising to me how many times that i actually do things because i think i have to in order to be this 'strong person' that people think i am.
i pray for strength and courage because i feel like i have to handle my NF perfectly. because God allowed this to happen. because with His strength or without it is the difference between life and death to me. i often lose sight that because i am only human, i can only be so strong, smile through pain only so much. but the man at church is right, i don't always have to be the hero. its simply impossible.
i go back and forth with my emotions towards pain and my lack of control daily, even hourly. my weaknesses are so evident. i cant hide from my tumors and my pain. my pride is slapped down when i try to go throughout a day without God getting me through. i must cling to Him for every moment.
i am going to be at battle against my tumors for the rest of my life, but knowing that i will be in the Lords hands through it all...reveals to me that i am going to be ok. i will have victory. maybe i don't always have to be 'the hero' but remembering that victory will be mine in the end sure makes me feel like one.
also, super hero's have cool outfits. sometimes i will lose perspective and struggle with my fears so i decided to make myself a super hero cape. i figure that whenever i put it on, i will be reminded of my strength and i will feel victorious. what could these little jerk tumors have on me when God is with me?
and guess what? when i strapped that cape on, i honestly felt like i could do some serious damage. it is safe to say that pretending i am a mighty destroyer of all tumors is now my new favorite hobby. wait, who am i kidding. i'm not pretending, i actually AM a super hero. Super Tumor Hater that is... batman and spiderman say hi.

the overflow

another overlaod of pictures. SO MUCH TIME TO MAKE UP WITH PICTURES!!
1) some of my loverly friends that came to visit me! i love them so much!! 2) what a wonderful night i had with my bestest friend Noi. we stayed up till after 2am talking, laughing and...crying. 3) My first hug from Noi after surgery. 4) feeling completely adventurous with my friend addi at my first concert ever, COLDPLAY! this concert would NOT have been doable without my oversized wheel chair. 5) out to dinner with amanda and her fam bam. 6) one of amamnda's precious little girls. this girls love is sweetness to my soul. 7) first time poker champ at family poker night! i give all credit to the titanium/terminator side of me. 8) me seizing the day. this was right before my cape came out and i flew around the city fighting tumors. 9) what a special friend i have in tami. this girls visits brought me coffee, laughter, princess balloons, mad libs and a felt coloring poster! what could be better? 10) what do we have here? my sweet aunt hand crafted me a bobble head! i am a bobble head?!

so remember in my last post how i said that i nearly died? well this isn't my first near death experience...

in high school my brother and i got in a really bad car accident on our way to a track meet. we hit black ice coming down a very steep and curvy road. we flipped upside down and slid all the way down the hill and somehow avoided sliding off the cliff. the paramedics were telling us that the wrecks they see like ours, do not come with surviving passengers. they were calling us "lucky" but i saw it different. you see, before the wreck happened. before we even left our house, i was getting into the car and i had a feeling in my gut to recline the seat back just in case we flipped upside down in a car wreck (not even kidding) i also thought i should slide the seat as far back as it could go, and even put the pillows and blankets that we brought for the track meet into my lap. clearly this wasn't 'luck' i don't even know if i believe in that word at all. but anyways, God wasn't done with me then, and He still isn't done with me yet.
at that time in my life, i didn't feel a rush of life cuz of nearly dying. the only thing i really took away from it was that i need to listen to those feelings i get, cuz they can save my life. and learning what my sister and i wanted to 'pass down' to each other if either of us died. i would inherit all of her clothes, and she would inherit my letterman's jacket (since she hadn't lettered yet, something i LOVED that i had before her) little did i know, she actually would be in a car accident herself 9 months later, and be one of those un-surviving passengers. you can read about that dreadful day HERE.
p.s. i still have a lot of her favorite clothes and wear them as often as i can, and when i do i want to tell every one that i am wearing her clothes. i want them to know her as much as they can, maybe they will gain a little of her joy, a little of her heart, hear a little of her laughter if they see her clothes on me. these clothes mean the world to me.

well, this time. this near death experience of mine has changed my life for good.

waking up from surgery, after receiving my very delayed morphine pump...i hear:
"so, did you hear that they nicked your artery?"
"no?" i replied. not even realizing what that meant.
"yea, they nicked the artery and they couldn't find the hole. you lost a lot of blood. they had to call for a vascular surgeon to come in for immediate assistance"
"wow. really?" i say...
"yea, you almost died"- said my boyfriend. his face was pale. he got up and started to walk to the foot of my bed.
"wait, what? i almost died? what? what do you mean?!" i said frantic, wanting to know more of what he and my family just went through.
"yea, they called us into a small room..." tears rushed into his eyes. he grabbed my feet to rub them, but he froze and the saddest expression covered his face.
"babe, i am so sorry."

he still cant really talk about it. i don't blame him, i can't imagine losing him.

fast forward 2 weeks i am out of the hospital, and i am back home in Oregon. spending most of my time sleeping. for the first few weeks i probably slept about 18 hours a day. when i was awake i was eating, throwing up, or watching tv. quite a life right?
eventually i was able to begin wrapping my head around the magnitude of what it meant that my artery was nicked...that i could have died so easily. after the somewhat of a depression that it initially left me in. i began to see life in a whole new way. my relationships, my lifestyle, my beliefs... i began to have an overflow of gladness, of appreciation. like i started all over again. like God gave me another chance. i had never felt more alive than i did at that time.
an overflow of emotions has been constant, but not always for the good. sometimes, my pain is so severe that it breaks me down. and down and down i go, falling into my pit of despair. i become overflowing in weakness. overflowing in desperation for help and relief. nothing giving me hope.
this has been one of the wildest rides i've ever been on. yes, i have been through extremely hard times in my life, but never have i been so in tuned to my emotions, my feelings and what they mean. now i feel my grief like never before. i feel my grief with no walls to guard or hide its depth. and on that same level i have never felt my joy, gratitude and peace as greatly as i have in these days.
a couple weeks ago i was feeling so broken. in so much pain. but i knew that i was going to be ok. because God has always proved to me that i am in His hands. i wrote these words to be my reminder:

When all is taken away and yet we still see Him, its clear that in His hands is where we are. Its where we've always been.


i have been repeating this over and over again to myself and wanted to share it with you all. why must it take something huge like almost dying to let us understand this simple yet profound fact? why must it take over a thousand tumors for me to comprehend this?

yes, this ride has been wild. but as i step back, i see that His hands surround me. and that my friends, is the only place where i want to be. come what may, i will still be here. wrapped gently in my makers hands. its where i've always been.

one less.

OVER LOAD of photos...(WARNING: some photos are gross)
1 and 2) before surgery. bein silly to keep me from bein crazy.
3 and 4) the strongest man i know, and he just happens to love me like crazy. praying and loving on me before i went under the knife.
5, 6 and 7) in the ICU, learning i almost died. 
8 and 9) still in ICU showing off my battle wounds and my amazing blood drainage sack
10, 11 and 12) in my private room...
13) saying my goodbyes to some seriously amazing nurses.
14) in the ER a few days after surgery because my head was swelling. but they sent me home and said that it was only normal to have that swelling after this type of surgery. wanna know why? cuz they drilled through my skull in 4-6 different places and clamped it tight in order to keep my head still during this crazy dangerous surgery. yea...DRILLED through my skull. 

im baaaaack! and i am with one less tumor! if your happy and you know it clap your hands!! CLAP CLAP!

days leading up to the surgery my mind and heart were numb. i knew that this was a dangerous surgery, but never did i imagine just how dangerous. a lot of you, facebook friends, local churches, friends and family were praying for me; and i am forever grateful.

so, there is so much to say. i really don't know where to begin.

first off, they got ALL of the tumor.
yay.

secondly, there was a "slight" complication.
this tumor (about a square inch) was so complex, not only was it part way in my spinal canal and messing with my spinal cord, but it was hanging out partly in my vertebrae entangling itself within those nerves and vertebral artery as well. when the surgeon tried to get that part (the final part) he nicked my artery. the nick so small, the team of surgeons couldn't find it. and even though the nick was small, i was loosing lots of blood, i lost about 40% of my blood in minutes. but you know what? God must not be done with me yet, because there was a vascular surgeon in the surgery room next door who was called into our room to help out. Dr Awesome found the nick, stitched it up and saved my life. i keep playing around with the ideas in my head of how perfectly detailed that the Lord orchestrated that day for me to still be alive. if the vascular surgeon wasn't next door, if he wasn't working that day, a slightly bigger nick...i could go on forever. its mind boggling to me that i could have died just like that. my poor family was called into a room to learn of what was going on, and to sit and wait. i feel terribly that they had to go through that. they still don't like to talk about it.

coming out of surgery was a hoot. i had to be taken to the cath lab to make sure my artery was fully closed up. since this was during the last hour or so of my anesthesia when i arrived in the ICU i started waking up....with NO PAIN MEDS. nurses still hadn't received orders from the doctor for my morphine...so they couldn't give me any.

opening my eyes, i think.

'i'm alive! i'm alive i'm alive i'm alive!!!" i automatically want to check out my moving ability's since i was so terrified of becoming partially or fully paralyzed. so, i wiggle my fingers-check. toes-check. YES!! nurse notices i am awake, she also checks my fingers and toes and...she agrees...i can do it.
shortly after, i remember my mom showing up. i tell her i can move my fingers and toes. but, i hurt! i hurt so bad. after the thrill of not being paralyzed sort of drifts away with the anesthesia....this pain is like thunder. all in the back of my neck. HOLY crap bombs!! its all i feel now, i cant ignore this agony. i wanted this torture to stop. was i supposed to be awake yet? why does it feel like my neck is open and surgeons are ripping out my bones? the worst. the worst pain i have ever felt. now when they ask me, "if 10 is the level of the worst pain you've ever felt, what is your pain level at now?" i'm like, "um zero, zilch nothing? negative a billion?"
instead of screaming like i sooo wanted to do, i whispered. and tears slowly fell down my cheeks. i whispered to my mom not to do or say anything stupid to the nurses as we waited for my morphine (cuz obviously she didn't want to see me in pain, and was trying to get the nurses to do something about it). i had to stay in control. i didn't want any of my family to know just how badly i hurt. the quieter i was, the more calm they would be. and therefor the more calm i would be. i'm tellin you. it was nuts. no pain killer immediately after surgery, may as well been attacked by someone on the streets that did some crazy knife work on my neck. would have felt the same.

i was in the ICU till the following day, and then moved to my own private room (praise God) till that friday when i was finally released!! i stayed at family's house in california for about 4 days and then made the trip home to oregon. i have been home for a few weeks now and i feel like i have been on the most extreme roller coaster of my life. i will share the emotional side of it in a different post. but physically, the past few weeks, my incision and some of my body parts that were effected by the surgery have been healing well. however, i am still in more pain than i was before this surgery. my shoulder and arms? oh my shoulder and arms!! especially my right one. the surgeon told me he sacrificed some sensory nerves (no big deal) but he also had to remove the entire nerve that the tumor was on, and unfortunately this was a muscle controlling nerve. now my right shoulder and arm hang about 2 inches lower than my left arm and i feel like they function less than half of what they did before.

still waiting to go back for my follow up appointment. will find out more about how permanent these symptoms will be. so until then i try not to be too distraught.

thank you all for your love your prayers and all of your kind words. you are all a help and give me strength to keep up the fight.

love letter from the IRS

pic 1) amanda and i with our hair braided together...laughter is a fine medicine. pic 2) love letter from IRS. pic 3) i love her, and i love key lime martinis...my favorite martini on the planet. pic 4) in times like these, you really think of what matters most in life; and this girl was always on my mind. long distance best friends for 10 years. pic 5) this is her hand, she sent this so it can be there for me to hold as i go through this. pic 6) wanted to share with you all how far my boy hair has come. almost 2 years of growth. monday they have to shave some off again. not sure how much will go. boy hair, you've done well. i'm so sorry to see you go again. pic 7) last but not least, my man. we have gone through so much. if we can get through all of my medical issues, we can get through anything. one of my deepest pains is i cant be more for him.




amidst the chaos of this whole not working/spinal surgery POOP. i got a sweet lil piece of mail. never thought i could adore a piece of mail so much. especially from the IR stinking S.

DRUM ROLL PLEASE!! (just imagine)

drum da dee drum boom boom bang, bada BING!!

guess who is tax exempt?! that's right! Tumor Hater Inc!!! yahooooooo! though i haven't had any time or energy to celebrate this awesome fact, i have something very big to look forward to after recovery. it has taken over a year to get the legal details squared away and about three and a half years since this dream began. that's about 2 years of fretting, procrastinating and not choosing a beautiful thing called faith.

but now my friends, my fellow haters.... this thing, this dream is officially official! i know this is a super huge dream, but who says that its impossible? not me. i used to only try to accomplish dreams or goals with as much enthusiasm and belief in myself as others had towards me. whether they doubted me or not; if they didn't have enthusiasm when i shared my aspirations, it made me doubt myself. they cant snuff out my fire anymore. i cant allow that. life is too precious, it isn't worth letting others thoughts control where we go. its not their life, why should they have liberty to tamper with it?

as much as i was looking forward to beginning Tumor Hater Inc this summer and finding tumor-ey peeps to help...I have to postpone that until after my recovery. i also just want to repeat that i am no longer going to be benefiting from proceeds from tumor hater gear. also, when i do fundraisers under Tumor Hater Inc, i will not be getting a percent of money raised for my own medical bills (this is illegal). i will eventually be an employee and get payed in that way, but the fundraisers will not be for my own medical bills.

so there you have it. i am sitting here admitting that i have reached for the stars. if i fall, i hope i find courage to rise. i will just have to find the faith to get me through, just as i do in my world covered in tumors. we all struggle with believing. we all lose faith and hope. the problem is when we choose not to move forward because we fear we will never find it again. lets get off the ground, lets move. this is our only life. we have a choice every moment on how we will live it. though i am struggling lately, i am pushing to move forward because i want to live life trying to make a difference. i would rather make a fool of myself trying to live abundantly and love deeply than be trapped in a life of mediocrity.

i dont know when i will be able to blog again, it all depends on how the surgery/recovery goes. but none the less, i will see you on the other side.

last week with the creep

pic 1) this is NOT me, i repeat...NOT ME! i found this on the internet when looking up what it will look like to be put together with titanium and screws after a laminectomy. this is the best photo i found. pic 2) now this is me. all glowing white is tumor. and front and center is the creeper. this is a birds eye view looking straight down at my neck. you can see creeper pushing inside the spinal canal and out through the vertebrea measuring at 2.79 cm or 1.1 inches in length. pic 3) this is what a laminectomy is. see how the spinal cord is fully revealed? i will have three laminae removed so they can get to the tumor. pic 4) hatin it up while we wait to see the specialist when we were in SanFran last week. pic 5) i have a lot of free time on my hands since i have been out of work for 4 weeks. that day, i was going stir crazy at home so a friend took me to get some bacon and cheese. cuz bacon and cheese is the begining of happiness.



For about 7 weeks i have had extreme pain in my neck and symptoms that have been worsening. symptoms so significant my doctor has ordered me out of work for the past 4 weeks until an answer is found. i have seen numerous doctors including specialists down in SanFran and the verdict is in. the creeper is guilty, and must be removed promptly. surgeon was booked out until summer but they got me on for march 26th.
in order to get to this tumor, they will have to perform a triple laminectomy (removal of 3 bones in spine). then (hopefully) after a successful removal, they will use titanium and screws to replace the bone and then fuse it closed. with a lot of serious risks with this surgery, the least of my worries will be losing 15% of my neck movement.
i am eager to get this tumor removed, i am happy that they have found the reason to my symptoms. all the while i cant help but be terrified of the risks. i keep having these moments where i see myself waking up paralyzed. waking up to my mom crying over me. not waking up at all. i have this sickening feeling that something bad is going to happen. i know i know i know, that i have some of thee absolute best surgeons ever working on me. but i also know that i am not invincible. this tumor is a plexiform, plexiforms suck. they are very difficult to remove. they wrap and they tangle themselves within the nerve that it grows on. needless to say, this nerve will be severed and therefore sacrificed. the fusing of my neck will cause that 15% loss of neck mobility, but there really is no certainty of how much nerve damage will happen.
i am scared out of my mind. i am closing off. i am building enormous walls around my heart. and i am having an extremely difficult time being positive. all i know, is that i am in Gods hands, and nothing will happen to me without His approval. and ya know, i guess that is good enough for me. but i am still teary eyed as i write that, knowing i have no control.
this is the first surgery that i HAVE to get done. this is the first time its not just because of pain. the tumors in my neck are already pushing my neck forward (which they call 'neck droop') and if left alone my neck would eventually be stuck with me looking down. the creeper is 1.1 inches long and extends inside the spinal canal and out through the vertebrae. when i am laying flat, the creeper presses against my spinal cord cutting it in nearly in half. when i move my neck around especially when i look down the spinal cord is compressed even more, thus causing all the more problems.
today i am pushing against what is easy and fighting for hope. when i close my eyes and remember where i've been, i have hope for where i will be. He has never forsaken me, He never will. this is all i have time to choose to focus on.
again, thank you all for your prayers. you are such an incredible source of support for me.