Saturday, March 24, 2012

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 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.

Monday, March 19, 2012

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.