i really don't know what to with all of this free time. i hate not being able to be very active. everyones like, do a puzzle! read a book! watch a movie. it gets old after about a day or two. i want to run, dance, be active. but no. my platelet levels are low. so not much to do till then. i can basically just roam the hospital and try to keep myself occupied. it's much harder than it looks. but at least i'm unattached from that dumb pole for most of the day. that thing caused most of my problems.
today is day 16 of 30 for my treatment. so, i'm halfway there. lord only knows how i made it to now. it's probably because i slept the first week.. haha. i'm getting more used to the routine of being in the hospital and all that. i get woken up at 430 to draw labs and get my vitals, then go back to sleep. i'm woken up again around nine to take my medicines and whatever else they feel like doing to me. i usually just stay up, since my tutor comes in at ten. i have "school" from 10-11, then a doctor might come in. i get unhooked from my tpn at 11 or 1130, and then i usually take a shower, and do random things all afternoon. that's my basic day to day schedule.
one thing that i've realized while i was here is really how truly lucky i am. there is always at least someone here with me most of the day. i have a growing wall of cards from people that care about me. not all of the kids on this floor have that from what i've heard. i really want to help them! it pulls at my heart every time i see some of these kids.
like this afternoon? i was sitting out in the lobby drawing and i saw this little girl that looked about 1 1/2 attached to a pole that was easily three times her size, and it was covered in equipment. it was just so sad to see, i seriously just wanted to start crying right then and there.
i really want to help these kids! i want to do something to brighten their day. i want to help and be a mentor to them! i just don't know what i could do. not all of them are sad and depressing, but some are. a lot of them are generally happy.
but they're still just kids. everyone is so worried about me, where as i'm worrying more about the other people on this floor! i'm going to figure out something. something to help. like i said, i'm halfway there. so, what next? done with the crazy chemo, and i'm getting healthier. what am i gonna do? i'm gonna take advantage of the fact that i'm not sickly. i'm gonna help some sick kids. i'm gonna keep decorating my room until there is no white space. i'm gonna keep everyone entertained with my randomness. most important of all, i'm gonna get better. of course. i feel great now. i'm just bored all the time! once my platelets go up i'll be down in the gym. i need to work out. \:
march can't come any sooner! but i might as well do something important while i'm here. :)
i'm here for a reason, i guess this is it.
to help kids.
help them smile just as much as i do.
yepp, that's it.
i'm gonna go take random pictures.
keep prayin for me! it helps a ton and makes me smile twice as much.
sarah. :)
Monday, February 16, 2009
hold on to the handlebars! (day 15)
i had a pretty great day today. this time last month, if you ask'd me what i'd be doing today, it sure would not have been this, haha. but overall? that's ok. i'm happy with today. i'm now allowed to be unattached for a twelve hour window, instead of four, which makes my life so much easier. i'm smart, i convinced them to make the tpn only go overnight. Twelve hours instead of twenty. works much better for me!
today was just one of those generally awesome and random saturdays i have all the time. it makes me realize how lucky that i am that i'm not terribly sick. it makes me realize how lucky i am that i feel better than i have in months. as of right now, it looks like the worst is behind me, and that somehow i skipped the super sick part. or, it'll just randomly sneak up on me and hit me like lightning. soo... lets hope for the first one? for sure. i was reading my lab reports earlier, (yes, i'm a nerd and read lab reports..) and my white counts are starting to go back up, it looks like. so that's a good indicator that i'm getting better, responding to chemo well. and the fact i'm not sick means i'm doing well also. everyone expects me to be really sick right now. to be confined to bed and not moving. they can't keep me down for long.
i'm one of the lucky kids on this floor...
which is really kinda terrible when you think about it. it makes me so sad thinking about it. i could be them. i could be void of spirit and look like death follows me around. but i'm not. i look normal. just with glasses, haha.
today when we were sitting in the lobby i saw a boy confined to a wheel chair, and attached to a pole twice the size of mine easily. he had this just blank look in his eyes, and it seriously wanted to make me cry. i hate seeing that. young kids that have just gotten their spirit sucked out of them. that when you look at them, you can't help but want to explode in emotion. it is so sad to see, i really just want to help them.
so when my little cousin left today, he hopped on the elevator and is just like, hold on to the handle bars! it made me laugh. i need to do that! hold on tight, and keep getting better. keep going up from here. there's no other direction!
eh, it's one am.
i need to sleep!
night.
keep praying for me!
sarah. :)
today was just one of those generally awesome and random saturdays i have all the time. it makes me realize how lucky that i am that i'm not terribly sick. it makes me realize how lucky i am that i feel better than i have in months. as of right now, it looks like the worst is behind me, and that somehow i skipped the super sick part. or, it'll just randomly sneak up on me and hit me like lightning. soo... lets hope for the first one? for sure. i was reading my lab reports earlier, (yes, i'm a nerd and read lab reports..) and my white counts are starting to go back up, it looks like. so that's a good indicator that i'm getting better, responding to chemo well. and the fact i'm not sick means i'm doing well also. everyone expects me to be really sick right now. to be confined to bed and not moving. they can't keep me down for long.
i'm one of the lucky kids on this floor...
which is really kinda terrible when you think about it. it makes me so sad thinking about it. i could be them. i could be void of spirit and look like death follows me around. but i'm not. i look normal. just with glasses, haha.
today when we were sitting in the lobby i saw a boy confined to a wheel chair, and attached to a pole twice the size of mine easily. he had this just blank look in his eyes, and it seriously wanted to make me cry. i hate seeing that. young kids that have just gotten their spirit sucked out of them. that when you look at them, you can't help but want to explode in emotion. it is so sad to see, i really just want to help them.
so when my little cousin left today, he hopped on the elevator and is just like, hold on to the handle bars! it made me laugh. i need to do that! hold on tight, and keep getting better. keep going up from here. there's no other direction!
eh, it's one am.
i need to sleep!
night.
keep praying for me!
sarah. :)
Friday, February 13, 2009
reflection. (day 14)
i feel better than i have in months. i'm up, awake, and bruise free. my levels are up, i'm feeling great. physically, yeah, i'm in awesome shape. i'm supposed to be really sick right now. i'm supposed to be lethargic, disgusting, and not have hair. i'm supposed to be deathly ill. that's what everyone expects me to be right now. they expect me to be torn down, physically and emotionally. they expect me to be drained and tired, worn down from the chemo. honestly? i feel amazing.
remember mulan? what an awesome disney movie. one of my favorite songs in that movie is reflection.
Who is that girl I see
Staring straight Back at me?
Why is my reflection someone I don't know?
she doesn't like the person that she see in her reflection, she knows that isn't her. that's for sure what i feel like. i feel physically better than i have in months, but i don't see myself anymore. that person doesn't stare back at me in the mirror. i see a person that has been changed by the chemo, by the crazy medicine regiment that they have me on. i see that i've lost 10 pounds from my diet changing. i see someone that is angry all of the time because they are trapped. i don't feel like that all of the time. but seeing myself like that in the mirror? yeah, it's not me. i don't feel like myself at all. i don't know this person, i don't like what i see. want to know who i want to see? the girl in my default. she was pretty. she was full of vibrance, full of life. i don't see her in the mirror. i feel like her, more than i ever have, but she doesn't stare back at me in the mirror.
When will my reflection show
Who I am inside?
all i know is, it better be soon. or i'll just stop using mirrors... HA.
keep praying for me kids!
sarah. :)
remember mulan? what an awesome disney movie. one of my favorite songs in that movie is reflection.
Who is that girl I see
Staring straight Back at me?
Why is my reflection someone I don't know?
she doesn't like the person that she see in her reflection, she knows that isn't her. that's for sure what i feel like. i feel physically better than i have in months, but i don't see myself anymore. that person doesn't stare back at me in the mirror. i see a person that has been changed by the chemo, by the crazy medicine regiment that they have me on. i see that i've lost 10 pounds from my diet changing. i see someone that is angry all of the time because they are trapped. i don't feel like that all of the time. but seeing myself like that in the mirror? yeah, it's not me. i don't feel like myself at all. i don't know this person, i don't like what i see. want to know who i want to see? the girl in my default. she was pretty. she was full of vibrance, full of life. i don't see her in the mirror. i feel like her, more than i ever have, but she doesn't stare back at me in the mirror.
When will my reflection show
Who I am inside?
all i know is, it better be soon. or i'll just stop using mirrors... HA.
keep praying for me kids!
sarah. :)
Thursday, February 12, 2009
keeps me up at night. (day 13)
i feel like a blob of unfit jell-o. i have not worked out in probably three weeks. i feel absolutley fat and disgusting. honestly, i'm losing weight because i haven't been able to eat much. but i'm losing muscle mass like crazy. i'm for sure not B.B.B anymore. i won't be back up to that level for a while. i can't do anything with my right arm because my picc line is in that arm. but hopefully i can do some kind of exercise while i'm here. i feel like a lazy couch potato. i'm never this un-active. it's really bothering me. i won't be able to do much until some random blood level goes up. apparently hard physical exercise is not good for me. darn.
new thing that just happened? my eating is officially being monitored. i'm apparently losing too much weight and need to be put on some crazy nutrition stuff that goes through my arm. i have to write down exactly what i eat, how much. everything. seriously? any other ways they can think of tethering me down??
one of the main questions i've been asked is if i'm scared, something like that. honestly, i'm not. i know what's going to happen and i got over that initial shock weeks ago. know what i am? know what keeps me up at night? my anger. i seriously can't explain it. i know i'm going to get out of here but i'm pissed beyond all belief that i'm here. i'm mad that i'm here and that i'm tethered down. i'm mad that every single thing i do is monitored like a hawk. i know it's for my own good, but it seriously feels like prison. i have no real freedom, and it's seriously driving me insane. i have a giant list of "can'ts" and a very short list of things i'm allowed to do. i can't go outside. i can't leave this floor without a mask. i can't go anywhere without this damn pole. i can't be in a large crowd. i can't be around sick people. i can't eat something without telling someone. i can't work any of the muscles in my right arm. i can't do anything that could cause me to bleed or bruise. i can't be anywhere without someone knowing. i can't do hard physical exercise. i can't shower without my arm being wrapped in plastic. do you know how annoying that is? to be that restrained? i do feel like i'm in a prison. my own personal form of hell-like prison. it's so terrible. i feel like running ten miles and collapsing. i hate running!!
this is the kind of stuff that keeps me up at night. i know it's sad and depressing but it's true unfortunately. there's nothing anyone can do except for me. all i can do is follow their rules and go along with this dumb game. it's all for my own good, but i seriously can't think of a worse punishment. i seriously can't think of anything more terrible than this. this IS my own personal hell for the next twenty something days. sweet. i know that there's an end to this but right now, this part is the worst. not the illness, not the medicine. it's the lack of freedom, it's me being trapped.
i can't wait to get out of here.
i'm going to go see if i can get unhooked from my shadow so i can shower.
keep praying for me kids, it really helps.
sarah. :)
new thing that just happened? my eating is officially being monitored. i'm apparently losing too much weight and need to be put on some crazy nutrition stuff that goes through my arm. i have to write down exactly what i eat, how much. everything. seriously? any other ways they can think of tethering me down??
one of the main questions i've been asked is if i'm scared, something like that. honestly, i'm not. i know what's going to happen and i got over that initial shock weeks ago. know what i am? know what keeps me up at night? my anger. i seriously can't explain it. i know i'm going to get out of here but i'm pissed beyond all belief that i'm here. i'm mad that i'm here and that i'm tethered down. i'm mad that every single thing i do is monitored like a hawk. i know it's for my own good, but it seriously feels like prison. i have no real freedom, and it's seriously driving me insane. i have a giant list of "can'ts" and a very short list of things i'm allowed to do. i can't go outside. i can't leave this floor without a mask. i can't go anywhere without this damn pole. i can't be in a large crowd. i can't be around sick people. i can't eat something without telling someone. i can't work any of the muscles in my right arm. i can't do anything that could cause me to bleed or bruise. i can't be anywhere without someone knowing. i can't do hard physical exercise. i can't shower without my arm being wrapped in plastic. do you know how annoying that is? to be that restrained? i do feel like i'm in a prison. my own personal form of hell-like prison. it's so terrible. i feel like running ten miles and collapsing. i hate running!!
this is the kind of stuff that keeps me up at night. i know it's sad and depressing but it's true unfortunately. there's nothing anyone can do except for me. all i can do is follow their rules and go along with this dumb game. it's all for my own good, but i seriously can't think of a worse punishment. i seriously can't think of anything more terrible than this. this IS my own personal hell for the next twenty something days. sweet. i know that there's an end to this but right now, this part is the worst. not the illness, not the medicine. it's the lack of freedom, it's me being trapped.
i can't wait to get out of here.
i'm going to go see if i can get unhooked from my shadow so i can shower.
keep praying for me kids, it really helps.
sarah. :)
Wednesday, February 11, 2009
simplicity. (day 11-12)
i just went to the ophthalmologist. they numbed my eyes and dilated them. so… i can’t see for anything. wanna know how i’m typing this? i’m in word, typing in 20 point font. yeah.. can’t read or see up close.. or text! it’s so terrible! not a good way to start off my day. but hey… my eyes are fine! and i’m still really nearsighted. i could’ve told them that. but i understand they have to make sure my eyes are ok and normal and all that. this is really going to bother me until this stuff wears off.
yesterday i did not write anything. mainly because i’m lazy and tired. i had an idea for what i wanted to write last night at like eleven thirty, but by then i was just like well it’s late, i’m exhausted. i’ll just write something boss in the morning. SO.. here it is, haha. my awesome thought i decided could wait till morning.
know the old saying, you don’t know what you’ve got till it’s gone? (it might be a song lyric too.. but snap it’s an expression..) i know that applies to me ten fold. just simple things that i never really thought of, that i really miss. i miss that simplicity. what i’ve semi-lost? well.. there’s my privacy. i barely get any. someone, whether it’s my parents, a doctor or a nurse is always in here. i’m very rarely left alone by myself. i am right now, but i can’t type really, or read, or text, so it kinda sucks. i’m left alone for the most part when i have visitors. but it’s just not the same. you’ll never know how nice it is to just have privacy until it is gone.
another thing, freedom? yeah, i don’t have much. i’m always attached to this dumb metal pole unless i’m in the shower. i’m also pretty much confined to this floor, it sucks. if i leave the floor i have to wear a mask. i hate wearing masks, so i’d much rather just stay up here. stupid immune deficiency… someone has to constantly know where i am at all times. it’s for my own good and all thatit annoying.
i miss the simplicity of a normal life more than anything. i miss being able to go as i please, to be independent. i miss being able to go to school and see my friends. i miss just being able to be normal. to have normalcy in my life, which i now have none of. i never really realized how amazing those simple things are until they were taken from me... but wow is
today, i have a day by myself till two or so. then again, it would be nice having someone here cause i can’t read a thing. i needed some time by myself though. i’m just super bored.. it’s a wednesday morning.
i’m going to see if i can get anything accomplished, maybe take a walk, something random.
keep praying for me kids.!
sarah, :)
yesterday i did not write anything. mainly because i’m lazy and tired. i had an idea for what i wanted to write last night at like eleven thirty, but by then i was just like well it’s late, i’m exhausted. i’ll just write something boss in the morning. SO.. here it is, haha. my awesome thought i decided could wait till morning.
know the old saying, you don’t know what you’ve got till it’s gone? (it might be a song lyric too.. but snap it’s an expression..) i know that applies to me ten fold. just simple things that i never really thought of, that i really miss. i miss that simplicity. what i’ve semi-lost? well.. there’s my privacy. i barely get any. someone, whether it’s my parents, a doctor or a nurse is always in here. i’m very rarely left alone by myself. i am right now, but i can’t type really, or read, or text, so it kinda sucks. i’m left alone for the most part when i have visitors. but it’s just not the same. you’ll never know how nice it is to just have privacy until it is gone.
another thing, freedom? yeah, i don’t have much. i’m always attached to this dumb metal pole unless i’m in the shower. i’m also pretty much confined to this floor, it sucks. if i leave the floor i have to wear a mask. i hate wearing masks, so i’d much rather just stay up here. stupid immune deficiency… someone has to constantly know where i am at all times. it’s for my own good and all thatit annoying.
i miss the simplicity of a normal life more than anything. i miss being able to go as i please, to be independent. i miss being able to go to school and see my friends. i miss just being able to be normal. to have normalcy in my life, which i now have none of. i never really realized how amazing those simple things are until they were taken from me... but wow is
today, i have a day by myself till two or so. then again, it would be nice having someone here cause i can’t read a thing. i needed some time by myself though. i’m just super bored.. it’s a wednesday morning.
i’m going to see if i can get anything accomplished, maybe take a walk, something random.
keep praying for me kids.!
sarah, :)
Monday, February 9, 2009
liberation. (day 10)
i had an amazing weekend. i was actually awake for two whole days in a row! haha. i had a "party" saturday and random people sunday. i'm technically not supposed to have a ton of people in my room, but the nurses really don't care. i'm not going to tell my doctors about my parties, i'll more than likely get in some form of trouble. i've built up an interesting reputation of being ridiculously awesome 24/7. i impressed my doctors with how much i understand everything and how i'm in such a good mood most days. i'm always like, who are you? i sound kind of rude saying that, but i just want to know everyone's names. a lot of people already know me. they're just like, i've heard about how amazing you are! i mean, what can i say? i am. :] haha.
yesterday when bethany came, she said that everyone wanted a video to just see that i'm ok and all that. i really want to see how it came out.. i just kinda stood next to my card wall, i'm like... well i'm ok... hooked up to a machine.. i didn't really know what to say. at all. i'm good like that i guess. i think its so crazy amazing how much people are concerned about me. it's so overwhelming and awesome. i'm so blessed to have such an amazing support network. it's so great. ahhh, i just can't explain it! it's another reason i'm positive almost all of the time. basically my brain is doing one of these all the time ----> XD
my iv chemo ends tomorrow morning at ten. it will pretty much be the best day ever. i've been hooked up to an iv 24 hours a day for the past week? i've slept through most of it but it sure does seem like an eternity. they have to keep one of the types of chemo continuously going. it's so terrible. i have to drag this pole around everywhere with me, i'm really suprised that i haven't broken it yet. i'm so uncordinated.
tomorrow? it's liberation day for me. i can be unhooked from my iv for more than ten minutes. i can shower without something attached to me. i'm so excited. i'll still be attached to it most of the time for fluids that keep my line clean. but.. if i want to do something random they'll let me. simple stuff like that i miss more than anything. just being able to move without dragging along a metal shadow all of the time... that's liberation in it's purest sense and form. more freedom than i had last week. i seriously can't wait.
i can't think of anything too deep or prophetic to leave you with. i'm just in a generally awesome mood after this weekend. all you need to know.
plans for this week?
well, i've got an ongoing v-day art project.
i'm going to learn how to draw.
my usual random-ness.
nothing new. [:
right now? i'm going to go take a walk. talk to random people, things like that.
who knows.
keep praying for me everyone!
it helps a lot.
ah! i know what else you can do. make me awesome stuff to decorate my room with? artwork, cards and stuff? that would be great!
thank you.
sarah. :)
yesterday when bethany came, she said that everyone wanted a video to just see that i'm ok and all that. i really want to see how it came out.. i just kinda stood next to my card wall, i'm like... well i'm ok... hooked up to a machine.. i didn't really know what to say. at all. i'm good like that i guess. i think its so crazy amazing how much people are concerned about me. it's so overwhelming and awesome. i'm so blessed to have such an amazing support network. it's so great. ahhh, i just can't explain it! it's another reason i'm positive almost all of the time. basically my brain is doing one of these all the time ----> XD
my iv chemo ends tomorrow morning at ten. it will pretty much be the best day ever. i've been hooked up to an iv 24 hours a day for the past week? i've slept through most of it but it sure does seem like an eternity. they have to keep one of the types of chemo continuously going. it's so terrible. i have to drag this pole around everywhere with me, i'm really suprised that i haven't broken it yet. i'm so uncordinated.
tomorrow? it's liberation day for me. i can be unhooked from my iv for more than ten minutes. i can shower without something attached to me. i'm so excited. i'll still be attached to it most of the time for fluids that keep my line clean. but.. if i want to do something random they'll let me. simple stuff like that i miss more than anything. just being able to move without dragging along a metal shadow all of the time... that's liberation in it's purest sense and form. more freedom than i had last week. i seriously can't wait.
i can't think of anything too deep or prophetic to leave you with. i'm just in a generally awesome mood after this weekend. all you need to know.
plans for this week?
well, i've got an ongoing v-day art project.
i'm going to learn how to draw.
my usual random-ness.
nothing new. [:
right now? i'm going to go take a walk. talk to random people, things like that.
who knows.
keep praying for me everyone!
it helps a lot.
ah! i know what else you can do. make me awesome stuff to decorate my room with? artwork, cards and stuff? that would be great!
thank you.
sarah. :)
Sunday, February 8, 2009
calm before the storm. (day 9)
i can feel the chemo starting to drain me. it's a terrible feeling. it's not a constant drain yet, but i can sure feel it full force when i wake up randomly in the middle of the night. it's the most terrible feeling i have ever felt. last night, well technically this morning, i woke up in a terrible sweat and felt like jell-o. walking was a terrible labor, and just sitting up was about as terrible. i had a fever of 38.4 C which is about 101.4 F. they started me on antibiotics and i went back to sleep. at around four this morning, my blood pressure was very low. i got it taken about ten times, before they decided i was fine. then to make things better, i broke out in a nasty rash-thing all down my back. it felt like someone stuck me in an itchy sweater and set it on fire, something terrible like that. it sure took them long enough, i was crying for a half hour before they decided to give me benadryl.
they need to stop giving me benadryl at four AM. it makes the rest of my day long and terrible.but the doctors said it was good i was awake, responsive, and really ticked that i was up at four AM. so, i guess i'm ok? whatever they say i guess..
my oncologist explained to me the other day what the chemo does to me. she basically said that it empties out my bone marrow.. awesome right? it sounds mildly painful.. it's basically going to clear out everything so healthy cells can develop.. but the idea of not having an immune system is still a very terrible thought. she said that would only last a few days then my counts would come up gradually by themselves.
this right now?
it's the calm before this storm. i could be really sick right now.. but luckily for me that hasn't started yet. it will have to happen though before i can get better. i will have to be deathly ill before my body can heal and rebuild itself. fun stuff, i know.
right now, i'm enjoying a super quiet sunday afternoon. i'm enjoying this lack of commotion that has seemed to follow me around all morning. it's very very nice. it's relaxing. days like this are my favorites. i can just kinda sit here and breathe, it's amazing.
plans for today? nothing really. a much smaller scale party than yesterday. that's about it. i think after this medicine is done, i'm gonna go sit in the lobby by the windows. that sounds like a plan.
keep praying for me kids. [:
ahhh, just thought of this quote i heard,
don't tell god how big your storm is,
tell your storm how big your god is.
sarah. :)
they need to stop giving me benadryl at four AM. it makes the rest of my day long and terrible.but the doctors said it was good i was awake, responsive, and really ticked that i was up at four AM. so, i guess i'm ok? whatever they say i guess..
my oncologist explained to me the other day what the chemo does to me. she basically said that it empties out my bone marrow.. awesome right? it sounds mildly painful.. it's basically going to clear out everything so healthy cells can develop.. but the idea of not having an immune system is still a very terrible thought. she said that would only last a few days then my counts would come up gradually by themselves.
this right now?
it's the calm before this storm. i could be really sick right now.. but luckily for me that hasn't started yet. it will have to happen though before i can get better. i will have to be deathly ill before my body can heal and rebuild itself. fun stuff, i know.
right now, i'm enjoying a super quiet sunday afternoon. i'm enjoying this lack of commotion that has seemed to follow me around all morning. it's very very nice. it's relaxing. days like this are my favorites. i can just kinda sit here and breathe, it's amazing.
plans for today? nothing really. a much smaller scale party than yesterday. that's about it. i think after this medicine is done, i'm gonna go sit in the lobby by the windows. that sounds like a plan.
keep praying for me kids. [:
ahhh, just thought of this quote i heard,
don't tell god how big your storm is,
tell your storm how big your god is.
sarah. :)
Subscribe to:
Posts (Atom)