its been 6 weeks and a day since my surgery. i have yet to cry or break down over the whole thing. there have been times when i have been on the verge and even last night i was looking at some photos eric had taken when i had just come out of surgery that i hadn't seen before and i almost started to cry looking at them, but really, i don't have any reason to cry. i feel good, i am getting better every day, i can see again - really i am very very lucky. i have had the best possible 6 weeks with the kids, the first time in a long time that i have been able to actually slow down with no work and no training, to just look at them when they are taking, let them explain things to me at their pace and get to spend some real quality time with them. every once in a while, they will still hug me and tell me they hope I am feeling better and every once in a while when i forget something or am a little absent minded, seamus is the first to say, its ok mom, its probably the tumor. ha!
almost two weeks ago i started a paleo challenge. it is no secret that i am the queen of eating crap. its like, if i don't eat crap, i get sick, or something. but some friends were doing it and i thot hey, why not. i took the paleo approach of if the cavemen ate it, i'll eat it. so very basic - no dairy, no added sugar and no grains.
i have been having such banned substances as sugar snap peas, yellow and orange sweet peppers, and tomatoes. ??? apparently in some paleo circles, those are not ok. oh, i've had the cocoa powder, too, making the most (?) delicious sorta chocolate cake stuff. i like it, seamus loves it, sirus says its not bad. eric wants to know what the big turd in the fridge is. but i have been doing quite well with it all. probably a little heavy on the fruits, a little light on the protein. but trying. but today was tough. after managing to avoid the most amazing looking Kraft mac & cheese and eric's margarita (although tequila is considered paleo?? who knew!) last night, it was Yo Plateau that did me in! I went and hunted and gathered some banana and peach flavored frozen yogurt. And then i hunted and gathered some chocolate chips and chocolate sauce. i did put pecans and strawberries on there, but that really didn't do anything to negate the graham crackers that i had trapped out in the woods and put on there either. whatever. it was good. 80/20, right? i was eventually going to start hunting and gathering clif shots, mojo bars and chili anyway.
BUUUUT, now that i am all paleo i got a totally gross rash. yes, internet, i am telling you this. i thot it was just zits. yes, internets - zits. but after a few friends took a little looksie, they were like, nope, rash. now, after i got out of the hospital i had some really bad skin problems. well, duh, that totally made sense considering i didn't shower for 80 days and i was pumped so full of all kinds of toxins so I wasn't totally surprised that i wound up with some grody skin for a bit. i'd say it got mostly better but never 100%, but then this whole, i am going to be all healthy thing happened and it got bad again, but its a rash. so i decided it must be either all the nuts, almonds specifically or maybe the balsamic vinegarette. a year or two ago i had having lots of salads and putting the oil and vinegar on them. every day, sometimes twice a day. then i said, who needs this oil crap, lets just do the vinegar. and then i started getting giant welts on me. i was convinced it was from the salad greens. damn leafy greens!!! but allie said, uh, probably not the case. more likely the vinegarette. so i cut out the vinegar and went to just oil. things got better then i got off that whole salad kick and moved on to poptarts. so this rash thing, i cut out the vinegar since again i was having it every day. but i also cut out the nuts. the almonds may be the culprit since i went from having them once a month or so to every day in the almond butter, just normal almonds, and almond milk. i also was having pecans and walnuts, too. i normally don't have any reactions to nuts but i normally don't eat a shit ton of them in a day either. so after like 2 days of no vinegar and no nuts (that is a lie - i had a lara bar today and it had almonds in it and yesterday i had some of the paleo chocolate cake and it had walnuts in it and i put pecans on my yo plateau) i have no knew breakouts or welts. i am going to try to go easy on the nuts still for the next few days but continue to cut out the vinegar. fingers crossed - its gross! there ya go internets!!
but today i took a nap. i was tired. i was drifting in and out when sirus came up and told me he didn't know what to do so i suggested that he come and nap with me! and he DID! usually he is just like, no that is ok, or he will crawl in and then crawl out real quick, but he cuddled right up and passed out. it was heaven!!
Friday, June 29, 2012
Wednesday, June 27, 2012
tired
so the other night i was super tired. i had two bad nights of sleep. one was friday night when eric was out of town at a mountain bike race. ooooh, it was my first over nighter on my own since surgery. i was pretty sure i could handle it. he asked if i was going to have the kids sleep in my bed with me and even though that is what i always do when he is gone (although sirus usually opts for his own bed instead) the thought hadn't occurred to me. both of them wanted to sleep in there with me which was great until i decided to go to bed and became instantly afraid that seamus would hit me in the head or face accidentally while she was asleep.
and to make it even better, as the night progressed, sirus moved into the middle pushing seamus even further onto my side of the bed and the cats all slept at the foot as usually. it was a crowded and i sure didn't sleep very well.
the next night eric was back, but i slept horrible again. non stop up, down, rolling over, my foot hurts, my leg hurts,my wrists hurt. oh it was never ending.
so sirus is a funny guy. he has a funny way of communicating too. for instance, instead of saying "that's right" he will say "that is correct". not a big deal but funny to hear from a little guy.
one of the things he says over and over, more along the lines of how some people say, "um" or "like", kind of as filler, he will say "want me to tell you something?" he will say it 100 times in one conversation. it gets a little overwhelming. and then one of his new ones is he will say "and PS" and then say one last thing before running off. what a guy.
as for my noggin, nothing new to report as of right now. my appointment was rescheduled for july 9. because of this, i totally tried to get them to give me the clifs notes version of what is going to happen but they would have none of that. so now i am waiting. and to say i'm not terrified is an understatement. i got myself all worked up into a tizzy by "researching" on the interwebs. gah!!!
and PS - sirus graduated from kindergarten!!!
and to make it even better, as the night progressed, sirus moved into the middle pushing seamus even further onto my side of the bed and the cats all slept at the foot as usually. it was a crowded and i sure didn't sleep very well.
the next night eric was back, but i slept horrible again. non stop up, down, rolling over, my foot hurts, my leg hurts,my wrists hurt. oh it was never ending.
so sirus is a funny guy. he has a funny way of communicating too. for instance, instead of saying "that's right" he will say "that is correct". not a big deal but funny to hear from a little guy.
one of the things he says over and over, more along the lines of how some people say, "um" or "like", kind of as filler, he will say "want me to tell you something?" he will say it 100 times in one conversation. it gets a little overwhelming. and then one of his new ones is he will say "and PS" and then say one last thing before running off. what a guy.
as for my noggin, nothing new to report as of right now. my appointment was rescheduled for july 9. because of this, i totally tried to get them to give me the clifs notes version of what is going to happen but they would have none of that. so now i am waiting. and to say i'm not terrified is an understatement. i got myself all worked up into a tizzy by "researching" on the interwebs. gah!!!
and PS - sirus graduated from kindergarten!!!
Thursday, June 21, 2012
caught up
ok, so after this one, i should be all caught up, to the present day. i think maybe. after that puking/ER visit nothing else of consequence has really happened. Although....
14 days after the surgery, i went to get the staples out. all 29 of them! i thot it might hurt, but it didn't. she used some funny scissors like things and just sort of plucked them out. i kept them, my mom is going to use them as part of a necklace for me. can you believe that in the entire Neuroscience Institute, they did not have any ziploc baggies! no fear, we improvised and wrapped them in gauze and tied them into a rubber glove. I did get light headed while she was taking them out and thot i might pass out so i had to lay down for a bit, but that opened up the opportunity for everyone to come look at my head. i had a big blobby blob on my right temple. it was totally fluid filled and gushy. it was possibly cerebral spinal fluid. brain juice, nice, right? they said to wear a head band, all Olivia Newton John - Lets Get Physical style to apply gentle pressure. that actually felt awesome and i was so happy to do it, even if eric smirked at me every time he looked at me. it worked tho!! my blobbly blob turned into a dent!!!
but WOW, having no staples turned me into a totally new person! it was awesome, a huge weight had been lifted off my shoulders!! but let me tell you - grody!! all kinds of grodiness evey time i took a shower. all kinds of new gore and skin chunks came out each time i washed my hair. finally though, my hands began to feel clean after shampooing tho! there were days when i had to literally wash my hands after washing my hair! so gross!!
so i was ok with everything for a while. week 3 happened, week 4, i spent those getting better, resting and becoming more active and reading a ton. Allie came to visit!!!! - a topic for another post. then i started to freak out. no real reason, well, ok, LOTS of reasons. my head was starting to hurt quite a bit. i hadn't taken any pain medicine since the puking from that first weekend at home, but it wasn't in the head pain, it was on the head pain and forehead pain. the numbness was and continues to wear off and while its happening, it hurts. not like mega, omg, i am writhing in pain hurt, but it doesn't feel great. like even the other day i was laying down and i rolled over and i swore i totally tore my head open. but i didn't. my incision looks "beautiful!" Anyway, coupled with that, the dent, the bump, and my ever increasing anxiety about my follow up visit in July caused me to call the nurses and they told me to come in. i'm glad i did!!
they showed me what a titanium plate looks like. i had no idea it would be so pretty!! i expected that little bar thing and the other double bar thing, but i didn't actually think about the giant holes they drilled. and apparently, those holes don't close up!!!! so they put that plate over top to protect the brains!!! and, those neurosurgeons are so smart!!! the plate is connected using those little screws. they told me this is particularly helpful if they need to go back in, especially if they need to go back in right away because they just unscrew it and pop it off again! i wondered about that because i had read so much about people having multiple surgeries and wondered how that worked.
so this was good to find out because it explained a bunch with my noggin. the small bump in the middle of my forehead is a plate. the big bump on my right temple is another plate. there might be another in there, but those two are the only ones the nurse and i were able to identify. but the big red circle is how i understand the whole bone hole situation to be. who knows really. the arrow points to the dent. so there is normally a muscle that runs up the side of your face and connects up on your forehead and mine has been cut and is no longer there. so there is a dent. and a bump. and you can see my pulse there. awesome.
and so they think that my inability to move my right eyebrow and forehead is a combination of them peeling my face down, nerves being cut, that muscle being cut, ya know. all those things. it might get better, it might not. it could be worse. at least i can see again!!! my jaw hurts on the right too, can't open my mouth all the way. might be related... but i am going to the dentist next week since i haven't been in over a year and for them to take a looksie at that too.
14 days after the surgery, i went to get the staples out. all 29 of them! i thot it might hurt, but it didn't. she used some funny scissors like things and just sort of plucked them out. i kept them, my mom is going to use them as part of a necklace for me. can you believe that in the entire Neuroscience Institute, they did not have any ziploc baggies! no fear, we improvised and wrapped them in gauze and tied them into a rubber glove. I did get light headed while she was taking them out and thot i might pass out so i had to lay down for a bit, but that opened up the opportunity for everyone to come look at my head. i had a big blobby blob on my right temple. it was totally fluid filled and gushy. it was possibly cerebral spinal fluid. brain juice, nice, right? they said to wear a head band, all Olivia Newton John - Lets Get Physical style to apply gentle pressure. that actually felt awesome and i was so happy to do it, even if eric smirked at me every time he looked at me. it worked tho!! my blobbly blob turned into a dent!!!
but WOW, having no staples turned me into a totally new person! it was awesome, a huge weight had been lifted off my shoulders!! but let me tell you - grody!! all kinds of grodiness evey time i took a shower. all kinds of new gore and skin chunks came out each time i washed my hair. finally though, my hands began to feel clean after shampooing tho! there were days when i had to literally wash my hands after washing my hair! so gross!!
they showed me what a titanium plate looks like. i had no idea it would be so pretty!! i expected that little bar thing and the other double bar thing, but i didn't actually think about the giant holes they drilled. and apparently, those holes don't close up!!!! so they put that plate over top to protect the brains!!! and, those neurosurgeons are so smart!!! the plate is connected using those little screws. they told me this is particularly helpful if they need to go back in, especially if they need to go back in right away because they just unscrew it and pop it off again! i wondered about that because i had read so much about people having multiple surgeries and wondered how that worked.
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| i spy Allie's latte with my new inquisitive look! |
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| don't worry!!! the cats keep me company!! and yes, it is JUNE and we still have flannel sheets with reindeer on the bed. |
Monday, June 18, 2012
barf bags
one of the best things about this whole tumor experience has been the discovery of the super cool barf bags!
so i posted here about my pre-surgery trip to the ER. it is where all the fun happened. i felt like ass and felt like i could possibly puke so they gave me a barf bag. i did not have to puke, but instead eric took full advantage of the situation. i was totally drugged up and didn't care, but i did think it was funny. we were there a long time, he had to entertain himself somehow!
I did use one of these barf bags RIGHT as we were leaving, like as in i stood up and lost it right into one. we handed that over to the team jacob candy striper guy and headed to the car. i was able to keep it together until we got home then lost it again right as we parked the car. then i went to bed.
anyway, ever since then i have been ooohing and aaaahing over these puke bags! they are the most amazing inventions every, except that once you puke into them there is no way to seal them up, no way to tie them off, nothing. so that is a flaw but other than that! thankfully LaVonne gave me a gift wrapped up in one so i have two and i put one in each car! but i have been vowing to get more.
so tonight i did a little googling.
MAN they are expensive!! but more than that i don't know how i feel about them selling USED ones on the Amazon. gross, but had i known, i wouldn't have given that one to team jacob!! i could have gotten a few bucks for it!
so i posted here about my pre-surgery trip to the ER. it is where all the fun happened. i felt like ass and felt like i could possibly puke so they gave me a barf bag. i did not have to puke, but instead eric took full advantage of the situation. i was totally drugged up and didn't care, but i did think it was funny. we were there a long time, he had to entertain himself somehow!
anyway, ever since then i have been ooohing and aaaahing over these puke bags! they are the most amazing inventions every, except that once you puke into them there is no way to seal them up, no way to tie them off, nothing. so that is a flaw but other than that! thankfully LaVonne gave me a gift wrapped up in one so i have two and i put one in each car! but i have been vowing to get more.
so tonight i did a little googling.
MAN they are expensive!! but more than that i don't know how i feel about them selling USED ones on the Amazon. gross, but had i known, i wouldn't have given that one to team jacob!! i could have gotten a few bucks for it!
but better than that, do you think I should submit the above image to Amazon seeing as they are asking me to share my own customer image??
Saturday, June 16, 2012
friday - big day
after i get through this post about the big friday, actually its a big saturday, i will be mostly caught up with all the brain tumor stuff, that is until we get to july 5. yikes!
but on this friday my mom came to visit me. eric was heading out to race in the 24hr race and he was taking the kids. i was in no shape to be left alone for the weekend, although i was feeling quite well. should have known.
so it was a beautiful day. my mom and i walked to the junior high and about 1/2 way around the track, turned around and headed home. yay! it was slow but it was nice to be outside when it was so nice out!
we came home, i probably napped. i probably had some lunch. who knows.i showered. i even shanve my legs which was a BIG DEAL since it had been a LONG TIME and i was a hairy beast. then i had some dinner. all the girls from the LUNA team had been dropping off the most amazing meals since the surgery and for a few weeks past. it was absolutely amazing and so generous of them! it made everything easier and we cannot thank them enough. after dinner we went for another walk. we walked down to this new housing development, not far at all from the house. but we walked through it and then sat at a picnic table in their community park. then we walked down the hill and through the trails through our neighborhood. all the walking was helping my tail bone, oh it hurt so much!!
but when we got home, i was like, whoa, yeah, i may have over done it. it was totally the leg shaving, i know it!! i layed on the couch, my head kinda hurt. i wanted to sleep but it was so early i was sure i'd never be able to nap then be able to get back to sleep for the rest of the night. so i lay on the couch feeling a bit like arse.
all through the night i did not feel good. not one bit. as soon as i woke up, around 5am, i called the nurses hotline. they were just like, dude, get yourself to the ER. so mom and i got into the car and headed to the ER.
in my terrible state i had to give her directions, but luckily its near by and not difficult to get too. its the same ER i went to the sunday before my surgery, no one was there when we arrived. totally empty. they took me right in. again, they were all standing around, only this time i was like oh i just had a craniotomy. again they all looked at each other and then 1/2 of them scattered and the rest went right into action. this one nurse or whatever she was gave me and IV and wow, she totally manhandled me! she kept telling me to relax my arm and i kept telling her she was hurting me! she physically was pulling my arm down, i swear she was sitting on it, or leaning on it or something and it felt like she was popping that needling right through me! gah!
then the dr came in i told him how i felt horrible and my head hurt and i felt nauseated although i hadn't puked at all. they decided to do a CT scan, which i was happy about. the guy came to get me and was like, do you have any staples or anything and i was like yeah, and the nurse just looked at him like he was crazy. she was like, yeah she had a craniotomy and he was like oh! oh yes you due have staples don't you! so he wheeled me in the bed to the CT scanner, i had to get up and move over and then i thot i was going to puke when the table moved up and into the machine and around. then i got back onto the ER table and they took me back. i was really not feeling well. my poor mom, was just waiting for me the whole time in the little room. i couldn't talk, well, i didn't want to. i just wanted to lay there with my eyes closed and sleep.
eventually they came in and said my CT scan looked great but i had low sodium which may be what was causing some of the problems. so they prescribed some anti-pukes and then some more pain medicine and said we could leave. what??? i wanted to stay. i wanted to stay until i was all better, until my brain and my head was all healed up. but noooo, they kicked me to the curb and said leave! go home! call your doctor on monday.
so we left. i heaved in the parking lot, but nothing came up. i got in the car and we headed home. mom found her way which was great and i was able to get into the house and up to the bathroom before the pukefest began. and boy was it a puke fest. but OMG! i had never felt so amazingly well as i did once it was over. i was like WOW!! i feel like a million bucks! lets go outside, lets run around! lets go DO something. ok, how about i go lay down for a bit. and i did. then a little later i got up and puked some more. and then again later. and then again later. we eventually got the antipuke medicine figured out and once i was taking that with just a little bit of applesauce i started to not puke so much. thank goodness. i was amazed at how much i was puking since i hadn't eaten or drank very much but it all kept coming.
thank goodness we got it under control. but my poor mom! she was amazing! every time, she was right there with me, getting my wash clothes and water and taking such good care of me.
she got up every 4 hours through the night to help me take my anti pukes and by morning i was feeling much better but still pretty haggared. sunday morning i weighed myself and i was down by about 5 pounds since friday morning, almost 11 pounds since my surgery. i was weak and feeling small and frail but better than on saturday. i stayed in bed all day. i slept a ton. my mom would come and hang out with me some but i was so tired i needed to sleep. i also learned to eat everything while laying down on my side. i ate eggs! i ate pizza! i ate an orange! and a ton of applesauce. it was so cool and wonderful with just a tiny bit of texture. it was perfect! i really did not want to sit up. not at all. my tailbone continued to hurt, and i kept saying to myself: i'd probably feel better if i sat up more. i would sit up more if my tail bone didn't hurt so much. my tail bone probably wouldn't hurt so much if i got up and walked around more. i'd get up and walk around more if it didn't make me sick and want to throw up. but before my mom left she made sure i was sitting up some. i still didn't leave the bedroom though. i didn't leave until probably monday afternoon!
eric and the kids came home later that night. it was good to see them, but i was tired and didn't have much energy to be with them. i had texted eric on saturday morning after we got back from the ER because i wanted him to know what happened but i didn't want him to come home poor guy had a 24hr race to do! i was happy he stayed and raced. i think it was good for him although i was worried he would come home and be totally exhausted. but he seemed to recover pretty well and manage. he is one impressive dude!!
but on this friday my mom came to visit me. eric was heading out to race in the 24hr race and he was taking the kids. i was in no shape to be left alone for the weekend, although i was feeling quite well. should have known.
so it was a beautiful day. my mom and i walked to the junior high and about 1/2 way around the track, turned around and headed home. yay! it was slow but it was nice to be outside when it was so nice out!
we came home, i probably napped. i probably had some lunch. who knows.i showered. i even shanve my legs which was a BIG DEAL since it had been a LONG TIME and i was a hairy beast. then i had some dinner. all the girls from the LUNA team had been dropping off the most amazing meals since the surgery and for a few weeks past. it was absolutely amazing and so generous of them! it made everything easier and we cannot thank them enough. after dinner we went for another walk. we walked down to this new housing development, not far at all from the house. but we walked through it and then sat at a picnic table in their community park. then we walked down the hill and through the trails through our neighborhood. all the walking was helping my tail bone, oh it hurt so much!!
but when we got home, i was like, whoa, yeah, i may have over done it. it was totally the leg shaving, i know it!! i layed on the couch, my head kinda hurt. i wanted to sleep but it was so early i was sure i'd never be able to nap then be able to get back to sleep for the rest of the night. so i lay on the couch feeling a bit like arse.
all through the night i did not feel good. not one bit. as soon as i woke up, around 5am, i called the nurses hotline. they were just like, dude, get yourself to the ER. so mom and i got into the car and headed to the ER.
in my terrible state i had to give her directions, but luckily its near by and not difficult to get too. its the same ER i went to the sunday before my surgery, no one was there when we arrived. totally empty. they took me right in. again, they were all standing around, only this time i was like oh i just had a craniotomy. again they all looked at each other and then 1/2 of them scattered and the rest went right into action. this one nurse or whatever she was gave me and IV and wow, she totally manhandled me! she kept telling me to relax my arm and i kept telling her she was hurting me! she physically was pulling my arm down, i swear she was sitting on it, or leaning on it or something and it felt like she was popping that needling right through me! gah!
then the dr came in i told him how i felt horrible and my head hurt and i felt nauseated although i hadn't puked at all. they decided to do a CT scan, which i was happy about. the guy came to get me and was like, do you have any staples or anything and i was like yeah, and the nurse just looked at him like he was crazy. she was like, yeah she had a craniotomy and he was like oh! oh yes you due have staples don't you! so he wheeled me in the bed to the CT scanner, i had to get up and move over and then i thot i was going to puke when the table moved up and into the machine and around. then i got back onto the ER table and they took me back. i was really not feeling well. my poor mom, was just waiting for me the whole time in the little room. i couldn't talk, well, i didn't want to. i just wanted to lay there with my eyes closed and sleep.
eventually they came in and said my CT scan looked great but i had low sodium which may be what was causing some of the problems. so they prescribed some anti-pukes and then some more pain medicine and said we could leave. what??? i wanted to stay. i wanted to stay until i was all better, until my brain and my head was all healed up. but noooo, they kicked me to the curb and said leave! go home! call your doctor on monday.
so we left. i heaved in the parking lot, but nothing came up. i got in the car and we headed home. mom found her way which was great and i was able to get into the house and up to the bathroom before the pukefest began. and boy was it a puke fest. but OMG! i had never felt so amazingly well as i did once it was over. i was like WOW!! i feel like a million bucks! lets go outside, lets run around! lets go DO something. ok, how about i go lay down for a bit. and i did. then a little later i got up and puked some more. and then again later. and then again later. we eventually got the antipuke medicine figured out and once i was taking that with just a little bit of applesauce i started to not puke so much. thank goodness. i was amazed at how much i was puking since i hadn't eaten or drank very much but it all kept coming.
thank goodness we got it under control. but my poor mom! she was amazing! every time, she was right there with me, getting my wash clothes and water and taking such good care of me.
she got up every 4 hours through the night to help me take my anti pukes and by morning i was feeling much better but still pretty haggared. sunday morning i weighed myself and i was down by about 5 pounds since friday morning, almost 11 pounds since my surgery. i was weak and feeling small and frail but better than on saturday. i stayed in bed all day. i slept a ton. my mom would come and hang out with me some but i was so tired i needed to sleep. i also learned to eat everything while laying down on my side. i ate eggs! i ate pizza! i ate an orange! and a ton of applesauce. it was so cool and wonderful with just a tiny bit of texture. it was perfect! i really did not want to sit up. not at all. my tailbone continued to hurt, and i kept saying to myself: i'd probably feel better if i sat up more. i would sit up more if my tail bone didn't hurt so much. my tail bone probably wouldn't hurt so much if i got up and walked around more. i'd get up and walk around more if it didn't make me sick and want to throw up. but before my mom left she made sure i was sitting up some. i still didn't leave the bedroom though. i didn't leave until probably monday afternoon!
eric and the kids came home later that night. it was good to see them, but i was tired and didn't have much energy to be with them. i had texted eric on saturday morning after we got back from the ER because i wanted him to know what happened but i didn't want him to come home poor guy had a 24hr race to do! i was happy he stayed and raced. i think it was good for him although i was worried he would come home and be totally exhausted. but he seemed to recover pretty well and manage. he is one impressive dude!!
Wednesday, June 13, 2012
tuesday, weds, thursday
oh my! i am never going to get caught up, and so much has happened!!!
lets go back to first week back at home after surgery.... came home monday, slept.
tuesday, slept. maybe i made it downstairs for a little bit, i really don't remember. but i think maybe i did.
wednesday afternoon, i walked with eric and sirus to pick seamus up from school! i didn't make it the whole way. i stopped about 3/4s of the way and sat on a bench while eric and sirus went the rest of the way to get her. then they stopped to pick me up and we all walked the rest of the way home. then i went and slept for probably a few hours. :)
the next day, thursday - one week after surgery, i walked with eric to to pick sirus up from school. i was able to walk the whole way that time, but picking him up isn't quite as far. it was so nice out, only a few small rain drops coming down but it was glorious!!!
i slept a ton, but sat up in bed more but my tail none was hurting like nothing i've ever felt. then when i would shift and hang my legs off the beg my hips would do some horrible realignment and it hurt so much, i could hardly stand it. i didn't want to get out of bed, i just wanted to lay down but i knew that was part of the problem. aaaak!!!
during all of this, i was tapering off of my brain swelling medications, too. that was a bit scary. how could we tell if my brain was done being swollen? they shrunk it, then it swelled? how would we know when it was back to normal. but i took all my pills with the apple sauce, oooooh, i love me some applesauce through this whole experience!!
eventually i was off all the medicines and i was taking only two extra strength tylonols at night time. i was still having the major sweats at night though. yuck! i'd wake up totally soaked. while laying in bed, i could bend my knees and the sweat would just roll down my legs. totally gross!
but i was getting better everyday! eating a little bit more, still sleeping a ton, but up and about a bit more.
everything was looking good!!!
lets go back to first week back at home after surgery.... came home monday, slept.
tuesday, slept. maybe i made it downstairs for a little bit, i really don't remember. but i think maybe i did.
wednesday afternoon, i walked with eric and sirus to pick seamus up from school! i didn't make it the whole way. i stopped about 3/4s of the way and sat on a bench while eric and sirus went the rest of the way to get her. then they stopped to pick me up and we all walked the rest of the way home. then i went and slept for probably a few hours. :)
the next day, thursday - one week after surgery, i walked with eric to to pick sirus up from school. i was able to walk the whole way that time, but picking him up isn't quite as far. it was so nice out, only a few small rain drops coming down but it was glorious!!!
i slept a ton, but sat up in bed more but my tail none was hurting like nothing i've ever felt. then when i would shift and hang my legs off the beg my hips would do some horrible realignment and it hurt so much, i could hardly stand it. i didn't want to get out of bed, i just wanted to lay down but i knew that was part of the problem. aaaak!!!
during all of this, i was tapering off of my brain swelling medications, too. that was a bit scary. how could we tell if my brain was done being swollen? they shrunk it, then it swelled? how would we know when it was back to normal. but i took all my pills with the apple sauce, oooooh, i love me some applesauce through this whole experience!!
eventually i was off all the medicines and i was taking only two extra strength tylonols at night time. i was still having the major sweats at night though. yuck! i'd wake up totally soaked. while laying in bed, i could bend my knees and the sweat would just roll down my legs. totally gross!
but i was getting better everyday! eating a little bit more, still sleeping a ton, but up and about a bit more.
everything was looking good!!!
Friday, June 08, 2012
breakfast in bed
it has now been 3 weeks and 1 day from surgery and eric is still bringing me breakfast in bed! i thought i would share some of the wonderful breakfasts!!
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| granola with WHOLE ALMONDS, frosted super mini wheats and frozen blueberries |
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| i better not be pregnant!! this is exactly what i ate all the time when i was pregnant with seamus |
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| homemade blueberry pie! with nadj looking on |
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| eggs almost every day. love the oranges |
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| already ate the eggs |
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| instagramed this breakfast! |
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| banana bread with chocolate chips thanks to jenny! |
Wednesday, June 06, 2012
sunday & monday
trying to get caught up! so much happened, including a ton of laying around!
on sunday i just chilled out at the hospital. when i woke up in the morning i felt way better. when the surgeon came to visit me, we had a long chat and he commented on how i looked so much better! he and i talked a long time, i asked him how they shrunk my brain. he said they used a medication that dehydrated it, he went on to say that it kind of just shrivels up, and then he back tracked and was like, well, not really shrivel.... each time i talked with the guy i liked him more. he said it took about an hour to get into my head like that.
christie came to visit, she visited me every day! she had even taken off from work on thursday and friday to be at the hospital with me which i can't thank her enough for!! she also let eric use her house, which he did often since he would go out biking or running, which was good because he needed a break from all the quiet and sitting doing nothing!
the occupational therapist came and helped me take a shower! it had been so long and it felt so good!! she washed my hair for me with hospital issued shampoo and she got most of the gore out which was fantastic!! oh, i was clean!! i was a whole new me!!!
eric was going to go home and sleep there on sunday night. i was ok with that and thought it was a good idea for him. but then i got a little sad when he was actually getting ready to leave. but that is when janet and lavonne showed up! hooray!! they kept me entertained for quite a while! they got to see my butt as i climbed out of bed and they were there with the PT came to get me to walk up and down stairs. i did so well at PT that she changed the message on by board from "husband may walk with pt on unit" to include "& friends". but we didn't walk any once i came back to the room.
on monday i woke up feeling pretty good - it was time to go home! eric was going to bring sirus once sirus was out of school. i was so excited!! when they got to the hospital, sirus was being all quiet. nothing scary was going on but he hadn't been in a hospital to visit anyone before so i think he was just absorbing it. to lessen the shock, American Pickers was on TV so he was able to watch that, which was nice since the nurse came in to take all my IV lines out. wow! it was so nice to have those gone, what a pain in the arse!!
i got dressed which was awesome!! after so many days in just a hospital gown, underpants felt amazing!! wow!! they truely are something great! i put on my yoga pants and the angry birds shirt sirus gave me for my birthday. when the lady came to take me down to the lobby, sirus was extra concerned that she brought a wheelchair. he wasn't so sure about that. but he walked next to me and held my hand but was still super quiet. we stopped at the hospital pharmacy and loaded up on drugs - something to keep my brain from swelling, some sort of antacid, 3 kinds of stool softners and laxitives (no straining!!! can't do anything that could increase intercranial pressure!! ICP!!) some anti pukers and some pain medication. while we were waiting for eric to get the car, sirus held my hand and told me how nice it was to hold since it was so soft! how sweet is that??
once in the car, the drive home seemed like forever. there wasn't any traffic but i was afraid of getting sick, afraid of getting into an accident, and frankly pretty afraid of going home.
once we got home, i went straight into bed and slept. eventually seamus came home from school, it was so good to see her! she and sirus were quite wound up and made a ton of noise. they weren't being bad, they were just being kids and playing, but even with the bedroom door shut it was too much for my healing brain to handle. even so, i was so happy to be home. my bed was so comfortable, my pillows, my flannel sheets, my comforter!!!
oh, but the cats!!! they did not trying to lick my incision, but they did lay all over me. apparently they missed me and continue to show me how much they have missed me. i even look at the bed and they are on top of me!
when it was time to go to bed for the night i will admit i was scared to have eric in the bed with me. more than once we have accidentally hit each other in the head or face while we slept and i was scared that he might accidentally bump into my noggin. but he didn't! i survived my first night at home!!
on sunday i just chilled out at the hospital. when i woke up in the morning i felt way better. when the surgeon came to visit me, we had a long chat and he commented on how i looked so much better! he and i talked a long time, i asked him how they shrunk my brain. he said they used a medication that dehydrated it, he went on to say that it kind of just shrivels up, and then he back tracked and was like, well, not really shrivel.... each time i talked with the guy i liked him more. he said it took about an hour to get into my head like that.
christie came to visit, she visited me every day! she had even taken off from work on thursday and friday to be at the hospital with me which i can't thank her enough for!! she also let eric use her house, which he did often since he would go out biking or running, which was good because he needed a break from all the quiet and sitting doing nothing!
the occupational therapist came and helped me take a shower! it had been so long and it felt so good!! she washed my hair for me with hospital issued shampoo and she got most of the gore out which was fantastic!! oh, i was clean!! i was a whole new me!!!
eric was going to go home and sleep there on sunday night. i was ok with that and thought it was a good idea for him. but then i got a little sad when he was actually getting ready to leave. but that is when janet and lavonne showed up! hooray!! they kept me entertained for quite a while! they got to see my butt as i climbed out of bed and they were there with the PT came to get me to walk up and down stairs. i did so well at PT that she changed the message on by board from "husband may walk with pt on unit" to include "& friends". but we didn't walk any once i came back to the room.
on monday i woke up feeling pretty good - it was time to go home! eric was going to bring sirus once sirus was out of school. i was so excited!! when they got to the hospital, sirus was being all quiet. nothing scary was going on but he hadn't been in a hospital to visit anyone before so i think he was just absorbing it. to lessen the shock, American Pickers was on TV so he was able to watch that, which was nice since the nurse came in to take all my IV lines out. wow! it was so nice to have those gone, what a pain in the arse!!
i got dressed which was awesome!! after so many days in just a hospital gown, underpants felt amazing!! wow!! they truely are something great! i put on my yoga pants and the angry birds shirt sirus gave me for my birthday. when the lady came to take me down to the lobby, sirus was extra concerned that she brought a wheelchair. he wasn't so sure about that. but he walked next to me and held my hand but was still super quiet. we stopped at the hospital pharmacy and loaded up on drugs - something to keep my brain from swelling, some sort of antacid, 3 kinds of stool softners and laxitives (no straining!!! can't do anything that could increase intercranial pressure!! ICP!!) some anti pukers and some pain medication. while we were waiting for eric to get the car, sirus held my hand and told me how nice it was to hold since it was so soft! how sweet is that??
once in the car, the drive home seemed like forever. there wasn't any traffic but i was afraid of getting sick, afraid of getting into an accident, and frankly pretty afraid of going home.
once we got home, i went straight into bed and slept. eventually seamus came home from school, it was so good to see her! she and sirus were quite wound up and made a ton of noise. they weren't being bad, they were just being kids and playing, but even with the bedroom door shut it was too much for my healing brain to handle. even so, i was so happy to be home. my bed was so comfortable, my pillows, my flannel sheets, my comforter!!!
oh, but the cats!!! they did not trying to lick my incision, but they did lay all over me. apparently they missed me and continue to show me how much they have missed me. i even look at the bed and they are on top of me!
when it was time to go to bed for the night i will admit i was scared to have eric in the bed with me. more than once we have accidentally hit each other in the head or face while we slept and i was scared that he might accidentally bump into my noggin. but he didn't! i survived my first night at home!!
Monday, June 04, 2012
saturday
when saturday finally came i was releived. after the friday night pukarama, i was like, i have got to feel better on saturday, right? that night made me feel very much like the first night in the hospital after we had seamus - no sleep, everytime we were about to settle down there was more chaos. i do think it was scarier with seamus then with my head tho. something about a tiny baby!!!
my surgeon came to see me on saturday and i was happy to see him. we chit chatted some and he told me about the tumor board that i was going to be part of and how they would be figuring out my treatment plan. he said he made a video of the surgery and he had to edit it. i wondered to myself what he used as music for it.
i don't remember too much more of the day other than asking them to please not send me home. they said no way, so i took a sigh of relief. they said i had another day or more to go, which i was happy to hear because i was in no way ready to go after that night, again similar to when i had the breakdown at the hospital with seamus asking them to please not make me go home yet!
this is also the day that flowers started to arrive! so many beautiful flowers, gifts and cards came while i was in the hosptial and in the days after when i got home. each one took me by total surprise and i could not beleive all of the generosity, kind words and thoughts from the amazing people in my life.
i spent a lot of time laying around looking at the wall. i had them keep my door open about a foot so i could stay in touch with what was going on in the "outside world". and there was a lot going on. so many things that i had to ask the physician's assistant what they all were.
there was a crazy loud Mary Had a Little Lamb alarm that was constantly going off. it was so loud!! and it seemed like it was right outside my door. apparently some of the patients have sensors on their beds and when they start to get out of bed the alarm goes off to tell everyone! at one point christie asked me how i knew that i didn't have the alarm on my bed! i didn't really know!
they also called code grey in the ER a lot. they did this so often that i had a dream about codes. there were hundreds of colors of codes in my dream. i think it was inspired part by the code greys but also the long row of lead vests. but code grey means something along the lines of someone trying to leave the hospital who is not of sound mind. why i needed to hear it on floor 5 in the east tower, i don't know.
the last alarm was one that went off when certain patients were having seizures. i was, and continue to be very lucky that i have not had any seizures. how scary! but the floor had an epilepsy control room, it was full of all kinds of computers. and epilepsy patients would come to the hospital for observation, trying to have a seizure while hooked up to everything so that the doctors and nurses could try to pinpoint exactly where it was coming from, or what might be causing it. i was worried for those patients, but the nurse said they weren't necessarily in pain, not that having a seizure was pleasant, but she admired them for wanting to get better and for going through all of that to try to figure out. every time that alarm went off, it was kind of scary though.
by the end of the day i started to feel better. sheesh, friday really took it out of me, but heck i was like only 2 days after having brain surgery? i certainly didn't feel like i had had brain surgery, that is for sure!!
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| the Micro Macro Plum XL |
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| the Coach2 - keeping me from getting pneumonia |
this is also the day that flowers started to arrive! so many beautiful flowers, gifts and cards came while i was in the hosptial and in the days after when i got home. each one took me by total surprise and i could not beleive all of the generosity, kind words and thoughts from the amazing people in my life.
i spent a lot of time laying around looking at the wall. i had them keep my door open about a foot so i could stay in touch with what was going on in the "outside world". and there was a lot going on. so many things that i had to ask the physician's assistant what they all were.
there was a crazy loud Mary Had a Little Lamb alarm that was constantly going off. it was so loud!! and it seemed like it was right outside my door. apparently some of the patients have sensors on their beds and when they start to get out of bed the alarm goes off to tell everyone! at one point christie asked me how i knew that i didn't have the alarm on my bed! i didn't really know!
they also called code grey in the ER a lot. they did this so often that i had a dream about codes. there were hundreds of colors of codes in my dream. i think it was inspired part by the code greys but also the long row of lead vests. but code grey means something along the lines of someone trying to leave the hospital who is not of sound mind. why i needed to hear it on floor 5 in the east tower, i don't know.
the last alarm was one that went off when certain patients were having seizures. i was, and continue to be very lucky that i have not had any seizures. how scary! but the floor had an epilepsy control room, it was full of all kinds of computers. and epilepsy patients would come to the hospital for observation, trying to have a seizure while hooked up to everything so that the doctors and nurses could try to pinpoint exactly where it was coming from, or what might be causing it. i was worried for those patients, but the nurse said they weren't necessarily in pain, not that having a seizure was pleasant, but she admired them for wanting to get better and for going through all of that to try to figure out. every time that alarm went off, it was kind of scary though.
by the end of the day i started to feel better. sheesh, friday really took it out of me, but heck i was like only 2 days after having brain surgery? i certainly didn't feel like i had had brain surgery, that is for sure!!
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| for some reason, it wants to be on its side and i cant get it to sit up right. |
Friday, June 01, 2012
million dollar friday!
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| leaking brain onto my pillow, and you can see the drainage tube running across my forehead |
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| you can see the tube there at the bottom |
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| grown up potty chair |
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| apparently this is how i got to the normal floor, totally forgot about this guy. |
i remember being pushed in the bed, or a bed at least and thinking, wow, this little tour of the hospital is not at all like the "i just had a baby" parade you get to go on with your baby burrito when you leave the birthing suite and go to your recovery room.
regardless, i think i was happy to get to my room. i can't remember. again, a private room and i could have overnight guests!
i had already told them i was done with the leg puffers, they said that was fine as long as i got up to walk around some and made sure to sit in a chair although it would be up to my nurses after a while since some of them are sticklers for the leg puffers.
i think i ordered some food - scrambled eggs, toast, fruit maybe. oatmeal? i felt really quite remarkable!
i got to look in the mirror and see that my hair was all still there and that i wasn't all deformed. the surgeon said he spent over an hour or so making sure to put my forehead back on right!
so friday was spent chilling, resting, eating apple sauce, taking medication through IVs, peeing. ya know. that type of stuff. eric and christie took turns sitting with me, i can't believe their patience and willingness to gel in and gel out so often! i couldn't watch TV, just having it on was too much stimulation, so i did a lot of laying there, which was so nice.
that night as we settled in to go to sleep, i just curled up but eventually i wound up in a bit of pain in the noggin. more pain than i had been feeling. plus i was feeling just overall a little bit like ass. i can't remember if we had taken some laps around the unit earlier in the day, but with the sitting, the applesauce eating and everything, it looked like i had done too much and it was starting to show.
after being a sleep for a bit, i woke up so thirsty i couldn't control it. i chugged 3 big cups of water one right after the other. i kind of knew that was a bad idea but i was so thirsty i couldn't help it.
and then it came back up.
again.
and again.
i can't remember the nurse's name that night, but he was super nice and it seemed like he spent the whole night in our room with us. every two hours or so. i did not feel good at all.
my head didn't hurt really but wow, i felt like ass.
and then, like at 4 or 5 or 6am, one of those times, he gave me some sort of medication that was 100% crack or something because i instantly felt better and drifted off to sleep. aaahh!!!! amazing!
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