Amber's Journey - working out and the difficulties

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Postby Hope4Life » Thu Jan 15, 2009 12:25 pm

had the marathon is disney last weekend! that was a lot of fun and did the half. a bit cold at 4 in the morning and the start was around 6 but it was good.

the new news is....now i need spine surgery. on tumors at T4 and T12. that might be around feb 10th if we can get that date. wanna just get it over with so i can get back to the gym and workout :) this will be my first spine surgery so no, im not as calm or non worried about...im very worried and wondering what it might be like or how ill be after it. but... just want to go get it done so i can get back into the swing of life and not worring over what the next card with NF will deal me. so we will see and ill keep ya posted on it :) stay tuned :)

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Postby Boss Man » Thu Jan 15, 2009 5:39 pm

The main thing is to try not to worry too much. I know it sounds easy to write on my part, but stressing about it, won't do any good. You just have to try and be as positive as you can, and I really, really hope you get the best possible outcome from this.

GOOD LUCK, and not to look patrionising, but keep on keeping on, because you are really doing an amazing job of getting through, and you deserve to be so proud of yourself.

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Postby swanso5 » Thu Jan 15, 2009 7:47 pm

you'll be fine...the surgery isn't actually for the spine, simply around it

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Postby Hope4Life » Sat Mar 21, 2009 1:05 pm

its been a while....

i had surgery feb 17th. the plan was to remove two tumors but a four hour surgery turned into about six or seven. i came out to learn they removed five tumors and not just two. they were all located around the two areas the other tumors were.

i was in ICU i think for 4-5 days. i just recall not eating. well i think i was in a normal room i just wasnt hungry and couldnt eat. the random fact is for surgeries.....inorder to know when the anastesia is fully gone, you have to pass gas LOL...and if you burp it means its still in your belly so no eating cus you will throw it up. which i never did. but the result of that not eating made me loose 12 pounds.

i went home after a week i think but i was rolled over like a dieing dog. the pain from this was so bad it was so hard to move. not to mention how weak i was from all the weight loss.

three weeks later my spine started leaking at the bottom. i went back to the hospital and the next day i was set for surgery again. they did tests on the fluid that was leaking from the incission site and come to find it was a staff infection. so the surgery that was set was to go in and clean up the area. couldnt eat after midnight but never got into surgery till 22 hrs later. so if i gained anything back over the weeks i was home...its out the window again.

they did the surgery and went well. got about 25 staples along my spine and a tube placed to drain the fluid for a few days.

we got there on a thursday i think and surgery friday and left sunday afternoon. they removed the tube from my spine but the day before they placed a PIC line in my arm. its like a HUGE IV. instead of a needle they have a thin tube that runs in a big vein in my upper forarm on the inside. this is used to pump the meds in me for the staff infection. im hooked to a tank really. the weight of the meds and the pump mechanism is NOT fun to lug and carry everywhere. oh and bath/shower time is just great! NOT. talk about creative ways to use saran wrap lol.

i have to wrap it around my arm to prevent water from affecting the PIC line. and also cant really drown the staples along my spine. yeah, showers are interesting and not easy so trying for baths now. but at least im not a dieing dog anymore. the pains gone and altho im stiff here and there.....its far better then what i was before the last surgery.

the only nice side affect is the weight loss but im weak as crap and i cant work out till the PIC line comes out which may not be for another week or so. i have to have it till the staff infection clears.

staples may come out sometime next week if they are ready but idk if i want to tempt that till i rid the infection bc my spine still leaks some. its bandaged tho. and change it almost daily but can never be to cautious! :)

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Postby Boss Man » Sat Mar 21, 2009 4:18 pm

I appreciate it must be a very difficult time at the moment, but I know that whatever happens you will get through this, as you are such an emotionally gifted and amazing young Lady.

As ever my understanding and best wishes are constantly with you. You are a true shining star, and I hope everything gets better for you as quickly as is humanly possible.

Take care, GOOD LUCK, and chin up misses.

:).

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Postby Hope4Life » Sat Mar 21, 2009 4:34 pm

thanks boss man :) if there is one thing i tell ppl after all these things i go through "calling me a tough guy would be a HUGE understatement" ;)

as the famous saying from titanic goes...."I figure life's a gift and I don't intend on wasting it. You don't know what hand you're gonna get dealt next. You learn to take life as it comes at you... to make each day count. " thats how life for me these days....is. it can be hell to deal with and now i FEAR tape lol. i hate it and when the docs use it for bandaging or IVs. my skin doesnt like it and if they arnt patient enough i will cry when they try to remove it. but after its all over i look back on what i had to go through. all i can say is that you learn to open your eyes a little bit wider on the world around you. "to make each day count" :) its all in the simple things!

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