i don't feel very well today. i'm in a good enough mood, however, my head hurts. i was feeling not well last night - nauseated, and headache and all. its hard not to figure out what is just not feeling well and what might be related to something tumor or radiation. i knew that whatever sickness i had last week was definitely good old fashioned being sick. it was almost pleasant to be so normal and so sure of what was going on!!! last night and today though could be any number of things. for one, i got up super early and went swimming before work. then i worked an entire 8 hr day! then i was up sorta late watching xfactor. that could do it, right? but i should have been able to sleep it off and feel better this morning. i might be dehydrated some, gotta work on that. i thot my hairs were done falling out, but it seems that maybe they still are. when they first started falling out, i only got a few clumps. then the rest have been just falling out one or two or 10 at a time. i didn't have any alarming piles of hair on my pillow or anything like that. i would just notice while shampooing that id have a few hairs on my hands. i think getting the hairs cut short was a wise decision as it really did almost just fall out without me even noticing too much. but i am still finding them in the sink, on my desk, wherever.
GOOD NEWS! the shit taste seems to be dissipating! that was quick. the smell is still around some, but not as bad, but the taste seems to be getting better. one thing that has helped is that my mouth has gotten better. something happened to my mouth - it was terrible! my gums got all swollen and nasty and super painful - ewww, gingivitis? never had it, but that must have been what it was. radiation related? who knows? but it seems to be getting better now, too. thank goodness because it did not feel good at all. was getting ready to go to the dentist over that one!
i am kind of a habit like person. i would like to keep to a schedule if possible, know when i am supposed to be somewhere, for how long, what is coming next, etc. i don't NEED this to be able to function, but some order is good. kind of why i work with a coach. makes it so i don't have to think. i can just do. except days when i have a track workout and have to find a track and then it totally overwhelms me, especially when school at one of the local HS has been canceled due to shooting threats by a student!!! AAAKK! but i bring this up because i have a bed time ritual. it used to be, brush my teeth, wash my face, go to sleep.
now it is a big ordeal and its really annoying.
brush my teeth
wash my face
use the 283974270386 anti aging, anti zit, make me beautiful creams and lotions and wait for each to do their magic before applying the next
go to the bathroom
roll around on the foam roller (always my back, sometimes my left hip and quad)
get in bed.
lay on right side.
roll over and lay on left side.
roll over again.
fall asleep for like 5 minutes.
wake up
lay there and think that my feet are hurting
stress about being awake and being afraid i wont be able to fall asleep unless i finish the ritual...
surrender to the ritual
go to the bathroom again
take an Aleve
go directly to sleep for the rest of the night.
is that bad? i have tried to skip the foam rolling, not good.
i have tried to just take the aleve before getting into bed the first time, it doesn't work. and the last part of it isn't so bad, its just the getting out of bed again and i don't want to take aleve all the time. and i don't know what the deal is with the feet. they have hurt at night time since high school. no one seems to know why or think its a problem.
there are worse things.
but oh i have been having some weird and vivid dreams. not the terrible disturbing ones when i first started radiation, but just vivid and weird. stress related, maybe?
nothing else going on, just looking forward to getting in some napping today and then tomorrow will be the 3rd full day of work for this week. Success! assuming this headache goes away!
Thursday, September 20, 2012
Friday, September 14, 2012
shirt with out the r
everything tastes like shit. sorry, not a family friendly word, and it will be repeated often here, as it is pretty much the only way to describe the weird, wet, paper nastiness that is everything right now.
I have been experimenting trying to find not shitty things. below are the results of my experimenting:
lots of shit in there. i do have to stay away from the frosted flakes though. holy cow those could get me in trouble in this current state if i'm not careful.
I talked to a woman today who suggested staying away from all my favorite foods for a while do as to not ruin them forever.
I have been experimenting trying to find not shitty things. below are the results of my experimenting:
I talked to a woman today who suggested staying away from all my favorite foods for a while do as to not ruin them forever.
Wednesday, September 12, 2012
the end, or the beginning
last week was a big week! lots happened, actually. labor day! hooray!! had the day off from work and radiation! good fun!
then tuesday WAS my last day of radiation! hooray for REALS!!! my mom and janet came with me. they were able to take a tour of the room and the machine and they got to meet all the people. those people are SO nice. every day they were cheerful, always asking how i was doing, helping me figure out my hair situation and all my aches and pains. but they were so nice that even when i went there and was super exhausted and grumpy and feeling like total ass, as soon as they asked me how i was each day, i would smile and be like, oh, i am good! but that was because they were the best part of this whole radiation thing!
THEN! on wednesday was the first day of school - big time 1st grader and 3rd grader on their way! something about taking sirus to his first day of 1st grade was so much harder then kindergarten. he looked so grown up, and lined up with all the kids instead of being dropped off at the kindergarten entrance. and seamus with her sparkly tom's shoes, she continues to blow me away with how grown up she is, how caring, and incredibly smart she is! oh, its hard watching them grow up!! but at least i get to see them grow up!!
on saturday janet and i did the lake stevens sprint tri. it was SO fun! the day was beautiful, the water was warm (but gross), the bike route was rolling and mellow and the run was a long the lake. what more could i have asked for! we raced side by side, except the swim where she had to wait for me at the end of the swim before entering T1, but the rest of it we were pedal for pedal and pace for pace. so fun!
after i took a nap, duh, of course!! and then we went out to the Pom bar at the Pomegranate bistro to celebrate the end of radiation with all the amazing people in my life! i was so touched that so many friends came out, some whom i haven't seen in several years or more, and it was so amazing to give and receive those hugs and laughs! i am so lucky in so many ways!
the next morning however, boy was i tired! i slept in, took a nap and then we headed to the cyclocross race. the kids did their first cyclocross race ever which is super fun becuase they are getting stronger and are better cyclists. they have fun, too. next time, we are looking at signing seamus up for the next level up - 2 complete laps, racing at the same time as the adult super beginners! but then ohmygosh, we came home and i slept some more! i bailed on my run, there was NO way i was getting out there.
NOW i am having some radiation symptons, even though radiation is over. dude, everything smells the same. a little like wet paper i guess. its not a terrible smell, its just not that good. and its everywhere! its as though its oozing out of my skin even. gross. not thrilled. allegedly it should go back to normal in a bit but since it happened after radiation is over i wasn't able to tell the doctors. i'll tell them at my follow up, oct 5. the other thing i have noticed and i am totally bummed about it, is that almond butter tastes terrible. like terrible dirt. ugh, its disgusting. i used to love it! looooove it! now its gross and it bums be out. there are worse things out there then smelling wet paper and almond butter tasting like dirt, but yuck.
so now though i have a sore throat. i probably over did it this weekend and then tuesday and today. waaah! but i'll get over it. what does tomorrow hold? hopefully a nap or two. :) and hopefully not any almond butter!
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| it was real |
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| first day of 1st and 3rd grade |
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| bathroom before |
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| ugh, more bathroom before |
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| lego creation |
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| big fun celebrating no more radiation |
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| very first cyclocross race! |
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| a little spill in the first race, but didn't stop |
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| chillin' after the race |
Monday, September 03, 2012
Update!!!
i tried on the new boots today with different pants and yes, they are just as amazing as i thought they were at the store. super excited. hooray! still fat, but at least my faith in my boots has returned.
Sunday, September 02, 2012
sigh...
its been a rough few days.
yes, i have been resting, i have been taking it easy. i have been trying to get better, to get over this throat and ear thing, but its been hard. i went to work the three days i was supposed to but i slept a lot too.
yesterday i even slept until 3:30pm. ugh. so lame. we walked the mile to the bike shop yesterday so sirus could change their calendar over, but had to have eric come pick us up. can't even say i've been sitting on my ass because i haven't. i have been laying down, asleep!
today i took the kids out for a busy day. first we went to the gym. i was supposed to do a run, an hour. but since i had been asleep all week rather then doing anything active, i instead did 50 minutes of walking and running at a very easy pace. i didn't want to over do anything, for fear i would wind up sick again or whatever. after i laid on the mat, did some stretches and unfortunatly thought about the image i saw earlier when i looked in the mirror. and i started to cry, right there at the gym. not just a tear rolling down, but full on cry.
i have gone through "i'm fat" stages before. but i wasn't actually fat. i mean, really, at 13% body fat, you aren't fat. now it is very different. i am not 13%, not even close. i can't even imagine what 13% is actually like. 13% is a number, just like the number on the scale, but what i see in the mirror makes me cry. people can tell me until they are blue in the face that there are plenty of women who would love to have my physique, but you know what, i'm not one of them. i knew part of the reason i trained as much as i did was because of how it made me look, but i didn't realize quite how much of my athletic self worth is based on my appearance. so i went and got in the shower at the gym and cried in there, its a little more discrete. but then i had to stop crying because i thot maybe i would feel better if i shaved my legs as its been like 3 weeks and i was a harry beast and i needed to be able to see to do that, so i had to stop crying.
then i loaded up the kids and we headed out.
we went to the cougar mountain zoo. we haven't ever been there before and it was pretty fun. and BOY did we have some excitement there! we were watching the tigers and they got all in a tiger fight!! there are 4 boy tigers and they are separated into groups of 2 because they don't all get along. we got to witness them taunting each other through some of the bars. lots of roaring!! and swatting at each other. and pacing. it was so exciting that the zoo keeper came by to tell us all what was going on. she basically said they were just re-emphasizing why they all won't ever be together in one enclosure. make sure to turn up the volume to get the full effect of the video!
the kids were not fans of all the roaring. it was loud! i was amazed. and wow, those tigers are huge. the one orange one came right up to the fence by us, just a few feet away. it was exciting! and scary since we were in the "warning - tigers can spray up to 20 ft, stand here at your own risk!" zone.
after, we went into seattle to drop some stuff off and then went to northgate mall. it has been like a billion years since we have been there. managed to get seamus some tom's shoes. she has been asking for them forever and i can't deny my baby girl a pair of hot pink glitter shoes. our sales guy was awesome. he was a total combo of Team Jacob and a member of a teeny bopper boy band. i wanted to hug him and bring him home with us- SO CUTE!!!
then we went to UVillage. while at northgate i did some very brave things - i tried on clothes. in my obese state, that is dangerous. the one benefit of it being fat and not muscle is that i can squish it to where ever i might want it. not everything looks great, but i managed to find a few things. but one jacket wasnt the right size and i had to go to uvllage to get it. again, hadn't been to uvillage in forever. we drove by the old house on the way there and i got all sentimental. i loved that little house! so sunny and warm! ok, hot. but i did love it. i got my jacket and a shirt i need to return or lose 20 pounds to wear and a shirt for eric.
but i also got the boots!! i totally splurged on these boots. SPLURGE. they are my surviving radiation reward. although i still have one more day, and i already told xtie that if i don't survive that one last day i will her the boots. i was so excited!! i instantly felt better and less fat. i was 100% sure that these boots were THE boots i have been wishing for!!
when i got home however, and tried them on with something other then shorts and pink tube socks, i still love them, but they aren't quite as awesome as i had thought. it could have been the pants i tried them on with. the pants are extra snug right now. sigh.... so i may have been concentrating too much on their uncomfortable snugness. ok and i thought they were black but they are actually dark brown. i will keep them. they are awesome. i will quit looking for boots. for now.
yes, i have been resting, i have been taking it easy. i have been trying to get better, to get over this throat and ear thing, but its been hard. i went to work the three days i was supposed to but i slept a lot too.
yesterday i even slept until 3:30pm. ugh. so lame. we walked the mile to the bike shop yesterday so sirus could change their calendar over, but had to have eric come pick us up. can't even say i've been sitting on my ass because i haven't. i have been laying down, asleep!
today i took the kids out for a busy day. first we went to the gym. i was supposed to do a run, an hour. but since i had been asleep all week rather then doing anything active, i instead did 50 minutes of walking and running at a very easy pace. i didn't want to over do anything, for fear i would wind up sick again or whatever. after i laid on the mat, did some stretches and unfortunatly thought about the image i saw earlier when i looked in the mirror. and i started to cry, right there at the gym. not just a tear rolling down, but full on cry.
i have gone through "i'm fat" stages before. but i wasn't actually fat. i mean, really, at 13% body fat, you aren't fat. now it is very different. i am not 13%, not even close. i can't even imagine what 13% is actually like. 13% is a number, just like the number on the scale, but what i see in the mirror makes me cry. people can tell me until they are blue in the face that there are plenty of women who would love to have my physique, but you know what, i'm not one of them. i knew part of the reason i trained as much as i did was because of how it made me look, but i didn't realize quite how much of my athletic self worth is based on my appearance. so i went and got in the shower at the gym and cried in there, its a little more discrete. but then i had to stop crying because i thot maybe i would feel better if i shaved my legs as its been like 3 weeks and i was a harry beast and i needed to be able to see to do that, so i had to stop crying.
then i loaded up the kids and we headed out.
we went to the cougar mountain zoo. we haven't ever been there before and it was pretty fun. and BOY did we have some excitement there! we were watching the tigers and they got all in a tiger fight!! there are 4 boy tigers and they are separated into groups of 2 because they don't all get along. we got to witness them taunting each other through some of the bars. lots of roaring!! and swatting at each other. and pacing. it was so exciting that the zoo keeper came by to tell us all what was going on. she basically said they were just re-emphasizing why they all won't ever be together in one enclosure. make sure to turn up the volume to get the full effect of the video!
the kids were not fans of all the roaring. it was loud! i was amazed. and wow, those tigers are huge. the one orange one came right up to the fence by us, just a few feet away. it was exciting! and scary since we were in the "warning - tigers can spray up to 20 ft, stand here at your own risk!" zone.
after, we went into seattle to drop some stuff off and then went to northgate mall. it has been like a billion years since we have been there. managed to get seamus some tom's shoes. she has been asking for them forever and i can't deny my baby girl a pair of hot pink glitter shoes. our sales guy was awesome. he was a total combo of Team Jacob and a member of a teeny bopper boy band. i wanted to hug him and bring him home with us- SO CUTE!!!
then we went to UVillage. while at northgate i did some very brave things - i tried on clothes. in my obese state, that is dangerous. the one benefit of it being fat and not muscle is that i can squish it to where ever i might want it. not everything looks great, but i managed to find a few things. but one jacket wasnt the right size and i had to go to uvllage to get it. again, hadn't been to uvillage in forever. we drove by the old house on the way there and i got all sentimental. i loved that little house! so sunny and warm! ok, hot. but i did love it. i got my jacket and a shirt i need to return or lose 20 pounds to wear and a shirt for eric.
but i also got the boots!! i totally splurged on these boots. SPLURGE. they are my surviving radiation reward. although i still have one more day, and i already told xtie that if i don't survive that one last day i will her the boots. i was so excited!! i instantly felt better and less fat. i was 100% sure that these boots were THE boots i have been wishing for!!
when i got home however, and tried them on with something other then shorts and pink tube socks, i still love them, but they aren't quite as awesome as i had thought. it could have been the pants i tried them on with. the pants are extra snug right now. sigh.... so i may have been concentrating too much on their uncomfortable snugness. ok and i thought they were black but they are actually dark brown. i will keep them. they are awesome. i will quit looking for boots. for now.
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| boots of the pretty bad ass persuasion |
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| sirus took his head off! |
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| teeny tiny brother!! |
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| teeny tiny sister!! |
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| it's all fun and games until someone gets mauled by a bear |
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| at the zoo with the macaw |
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| someone had low blood sugar and needed a snack! |
Friday, August 31, 2012
photo update!
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| my hairs were getting longer so i pulled out the scissors and cut them myself |
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| put up your dukes! |
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| sirus's version of a cartwheel |
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| stranger danger! we're famous! |
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| hot |
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| thinking about this color for the powder room remodel |
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| pedicure longtime over due, with eric washing the car in the background |
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| see, eric really was washing the car |
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| cats |
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| radiation x-rays matched up with pre-radiation CT scan |
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| same stuff, side view. |
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| resting and relaxing - fuzy weighing in at a solid 14 pounds, nadj weighing in at a soft 9 pounds. (note the new paint and new curtains!) |
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| magically delicious |
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| mama deer chasing the bunny out of the yard! |
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| masters swimming! although i just stood on deck. |
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| BFFs at HomeDepot |
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| radiation induced baldness!! |
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| MORE radiation induced baldness!! plus a giant zit. |
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| what i was afraid i might wind up looking like. who can tell me who this is and what movie it is! |
Tuesday, August 28, 2012
doctor tuesdays
today was appointment 25 of 29! yahoo!
it was also doctor day. yesterday i complained to the techs and the nurse that my head was hurting since friday. actually my throat was hurting too and my right ear wasn't so happy either. they asked if i wanted to see the doctor yesterday and i complained to them about he thinks i am stressed out and that i didn't want to alarm anyone because i don't want them to think i am a hypochondriac (OMG! i must be one because i totally spelled that correctly on the first try!!!). so i waited until today. i spent most of the day in bed, except for the part when eric and i almost got divorced trying to get the kids' passports renewed. but i slept all the rest of the time. i really like the doctor i saw. he's the one who helped me with my stomach issues. he is funny because he tells you like it is. i think my doctor tries to make it seem better, i do'nt think he goes over the top saying everything is great, but this guy is very straight forward, not scary but not sugar coated and certainly doesn't make me feel like i am making stuff up.
so he checked out my ears and throat and all that, i've got some fluid in my ears and my eustachian tube is all inflamed. not infected but not happy. he shook his head when i told him about the triathlon this past weekend, wondering if i had told my real doctor i was planning on doing it. the nurse assured me that i did tell him, and even if i hadn't have told him, he would have wanted me to do it. but they did a strep test and was told to not do anything but rest for the rest of the week. maybe take some sudafed. but nothing else. like so much so that as i was leaving the nurse chased after me and was like, really, we're not kidding, you need to take it easy. but this was of course after she showed me the whole tube system they have there. this is a brand new hospital, top of the line, super fancy, and they send things around in those tubes like at the bank! she said they had to tube over the strep test kit, and i was like, what's that mean? so she showed me! its crazy!
but back to the doctor. i have 4 treatments left. and i wanted to know when i am considered cured. i told them i wanted to know when to plan my I'm Cured party. when i asked the nurse first, she said she couldn't tell me because she didnt know. but she said i could certainly plan an I'm Done with Radiation party. that sounds like a good plan! but then i asked the doctor, and he started his speech with something along the lines of well, i am going to tell you, because you have the right to know and you asked, but you've got a really complicated case, so its really hard to tell. he said most certainly i can think of myself as cured once radiation is done, and how that is a very positive way to look at it (i was like huh, what?). he said i will of course have many follow ups and way more MRIs than anyone really should have, but the further out we get from the surgery date, the more i can consider myself cured. i asked him if it was like breast cancer, when they say 5 years in remission and you are considered cured. he didn't answer that and instead said that my surgeon was actually very aggressive in the surgery, and coupled with the radiation, and the fact that my tumor is a slow grower, if it were to grow back, it could be years from now. he said if i had not done radiation, and just decided to wait and see, if it was going to grow back, it would likely grow back sooner. so, what does that mean? in my opinion, i am going to go the positive way with it, and say it means i am cured! or at least i will be at 3pm on tuesday Sept 4th!! i may have pituitary and hormone issues, but as far at the tumor goes, i am pretty sure i will be cured on tuesday. party!!! or nap!!! even if they did tell me i really shouldn't do the triathlon on the 8th! but i am going to do it, race buddy style with janet! can't wait!
it was also doctor day. yesterday i complained to the techs and the nurse that my head was hurting since friday. actually my throat was hurting too and my right ear wasn't so happy either. they asked if i wanted to see the doctor yesterday and i complained to them about he thinks i am stressed out and that i didn't want to alarm anyone because i don't want them to think i am a hypochondriac (OMG! i must be one because i totally spelled that correctly on the first try!!!). so i waited until today. i spent most of the day in bed, except for the part when eric and i almost got divorced trying to get the kids' passports renewed. but i slept all the rest of the time. i really like the doctor i saw. he's the one who helped me with my stomach issues. he is funny because he tells you like it is. i think my doctor tries to make it seem better, i do'nt think he goes over the top saying everything is great, but this guy is very straight forward, not scary but not sugar coated and certainly doesn't make me feel like i am making stuff up.
so he checked out my ears and throat and all that, i've got some fluid in my ears and my eustachian tube is all inflamed. not infected but not happy. he shook his head when i told him about the triathlon this past weekend, wondering if i had told my real doctor i was planning on doing it. the nurse assured me that i did tell him, and even if i hadn't have told him, he would have wanted me to do it. but they did a strep test and was told to not do anything but rest for the rest of the week. maybe take some sudafed. but nothing else. like so much so that as i was leaving the nurse chased after me and was like, really, we're not kidding, you need to take it easy. but this was of course after she showed me the whole tube system they have there. this is a brand new hospital, top of the line, super fancy, and they send things around in those tubes like at the bank! she said they had to tube over the strep test kit, and i was like, what's that mean? so she showed me! its crazy!
but back to the doctor. i have 4 treatments left. and i wanted to know when i am considered cured. i told them i wanted to know when to plan my I'm Cured party. when i asked the nurse first, she said she couldn't tell me because she didnt know. but she said i could certainly plan an I'm Done with Radiation party. that sounds like a good plan! but then i asked the doctor, and he started his speech with something along the lines of well, i am going to tell you, because you have the right to know and you asked, but you've got a really complicated case, so its really hard to tell. he said most certainly i can think of myself as cured once radiation is done, and how that is a very positive way to look at it (i was like huh, what?). he said i will of course have many follow ups and way more MRIs than anyone really should have, but the further out we get from the surgery date, the more i can consider myself cured. i asked him if it was like breast cancer, when they say 5 years in remission and you are considered cured. he didn't answer that and instead said that my surgeon was actually very aggressive in the surgery, and coupled with the radiation, and the fact that my tumor is a slow grower, if it were to grow back, it could be years from now. he said if i had not done radiation, and just decided to wait and see, if it was going to grow back, it would likely grow back sooner. so, what does that mean? in my opinion, i am going to go the positive way with it, and say it means i am cured! or at least i will be at 3pm on tuesday Sept 4th!! i may have pituitary and hormone issues, but as far at the tumor goes, i am pretty sure i will be cured on tuesday. party!!! or nap!!! even if they did tell me i really shouldn't do the triathlon on the 8th! but i am going to do it, race buddy style with janet! can't wait!
Monday, August 27, 2012
craniopharyngioma
i just found THIS:
Craniopharyngioma usually presents as a single large cyst or multiple cysts filled with a turbid, proteinaceous, brownish yellow material that glitters owing to the high content of floating cholesterol crystals.
my tumor, well the cyst, was GLITTERING!! possibly. i didn't see any glitter in the video, but i'll have to ask the doctor next time i see him!
Craniopharyngioma usually presents as a single large cyst or multiple cysts filled with a turbid, proteinaceous, brownish yellow material that glitters owing to the high content of floating cholesterol crystals.
my tumor, well the cyst, was GLITTERING!! possibly. i didn't see any glitter in the video, but i'll have to ask the doctor next time i see him!
whooping cough
someone at work got the whooping cough. uh oh! i am going to assume i was not exposed.
but i feel like crapiola! i've had a headache since friday. i slept most of sunday. today i felt crappy in the morning and even contemplated not going to work. here is how my day has been:
7:05 AM alarm goes off
7:20ish get out of bed
8:06 leave for work
8:24 arrive at work, go inside.
12:30 leave work and head home
12:48 get in bed and fall asleep
2:05 wake up and leave for the hospital
2:48 after treatment and visit with the nurse, leave hospital. only 5 more to go!!
3:12 eat voodoo donuts at leslie's!
3:30 go home and get in bed, fall asleep
5:30 wake up for dinner
6:46 vote on the family's lego creations and eat otter pops.
ugh, still have a headache. met with the nurse today to talk about it. i had mentioned it to the techs and they said to talk to the nurse. she asked if i wanted to talk to the doctor, i told them all how he thinks i am stressed. they laughed. we'll see what he says tomorrow. i have a sore throat, too.
but i've got only 5 more to go! the one tech who had told me that she was pretty sure i would lose my hair came back from her vacation. she was gone all last week when my hair started falling out but today i was there so i told her, and she said that the other techs already told her. she was hoping i had super hair folicles that weren't going to fall out. but its hard to say if more will come out or not.
today there was this tiny little old woman in the waiting room. sounds like she got her diagnosis on friday and is already in there starting her radiation and will start with chemo next week, i don't know what for though. i felt so bad for her. she was a spunky little lady but she was scared and overwhelmed. it is alarming on that first day of radiation, they give you all this stuff and your schedule and your check-in card and your parking pass all before you even go in there to see THE MACHINE. the nurse was talking to her, but i wanted to tell her that the nurses and everyone is great and that they will take great care of her. if i see her tomorrow i will reach out to her. she looked so scared, i felt bad that she was there all by herself.
last week of summer before school starts! we've got a 1st and 3rd grader starting up. sirus is the funniest. he loves new clothes. i got him a new handsome sweater for school. he hung it up in his closet and told me how he was going to hang all of his handsome clothes in there. seamus on the other hand likes new clothes too but will be the first to say she doesn't need any new shoes or a new shirt because she already has enough. he is reading right out of eric's book with that one. i guess i should embrace that while I can!
so sad that summer is almost over!
but i feel like crapiola! i've had a headache since friday. i slept most of sunday. today i felt crappy in the morning and even contemplated not going to work. here is how my day has been:
7:05 AM alarm goes off
7:20ish get out of bed
8:06 leave for work
8:24 arrive at work, go inside.
12:30 leave work and head home
12:48 get in bed and fall asleep
2:05 wake up and leave for the hospital
2:48 after treatment and visit with the nurse, leave hospital. only 5 more to go!!
3:12 eat voodoo donuts at leslie's!
3:30 go home and get in bed, fall asleep
5:30 wake up for dinner
6:46 vote on the family's lego creations and eat otter pops.
ugh, still have a headache. met with the nurse today to talk about it. i had mentioned it to the techs and they said to talk to the nurse. she asked if i wanted to talk to the doctor, i told them all how he thinks i am stressed. they laughed. we'll see what he says tomorrow. i have a sore throat, too.
but i've got only 5 more to go! the one tech who had told me that she was pretty sure i would lose my hair came back from her vacation. she was gone all last week when my hair started falling out but today i was there so i told her, and she said that the other techs already told her. she was hoping i had super hair folicles that weren't going to fall out. but its hard to say if more will come out or not.
today there was this tiny little old woman in the waiting room. sounds like she got her diagnosis on friday and is already in there starting her radiation and will start with chemo next week, i don't know what for though. i felt so bad for her. she was a spunky little lady but she was scared and overwhelmed. it is alarming on that first day of radiation, they give you all this stuff and your schedule and your check-in card and your parking pass all before you even go in there to see THE MACHINE. the nurse was talking to her, but i wanted to tell her that the nurses and everyone is great and that they will take great care of her. if i see her tomorrow i will reach out to her. she looked so scared, i felt bad that she was there all by herself.
last week of summer before school starts! we've got a 1st and 3rd grader starting up. sirus is the funniest. he loves new clothes. i got him a new handsome sweater for school. he hung it up in his closet and told me how he was going to hang all of his handsome clothes in there. seamus on the other hand likes new clothes too but will be the first to say she doesn't need any new shoes or a new shirt because she already has enough. he is reading right out of eric's book with that one. i guess i should embrace that while I can!
so sad that summer is almost over!
Wednesday, August 22, 2012
today
so much excitement in my life, let me tell you what!!!
last week i had an MRI. i mentioned that and the sinus infection. what i didn't mention was how it was denied by my insurance company. deemed as not medically necessary. so my initial reaction was wow, wish i would have known that before I actually HAD the MRI. 2nd reaction was huh, maybe really who cares if i have a giant cyst growing in there caused by the radiation pressing all up in my good brain and stuff. i guess knowing that sooner rather then later isn't a big deal. anyway, turns out my doctor had already done some ass kicking over the phone and got it approved, so i got another letter saying it had been approved. i bring that up because today i had another MRI. and the nurse told me how it had not been approved either but then they took care of it, so all is good in insurance land. poor sirus would have had to have postponed 2nd quarter of his junior year of college if we would have had to pay for that out of pocket, holy crap!
yesterday though i was so freaking exhausted. it was unbelievable how tired. like, i was having a tough time driving myself to the appointment. i fell asleep during my appppointment and then hung out in the parking lot for 20 minutes drinking my decaf frappuccino in an attempt to see if it would give me enough energy to make it home. luckily i made it home and into bed without any major injuries to me or anyone else. gracious.
and then today!! so exhausted today, too!! i went to work and was productive again! i like that!! but by the end i was like, dude, i am getting TIRED. i was planning on swimming a little, but instead i got some fruit and yogurt from the whole foods, picked up two of the hats i had been checking out and then went to the hospital. i got there 45 minutes early because i was hoping to get in an our early so i could get my doctor visit done early so i would be on time to the MRI. they are so awesome, too. they took me right back and then i had time to meet with the doctor. he was super relaxed which was nice and sat in the chair next to me chatting. we discussed how my hair started to fall out (hence the hats purchase). he doesn't think any more will fall out while the nurse is like, yeah, once it starts, it just keeps coming out. but she also said she doesn't think i should shave it. says to give it more time because it might be ok.
so i asked him about what happens next. i have 8 appointments left. funny, when i brought it up, i was like, i am almost done! but really i am just over 2/3rd done. still a lot left, but getting there for sure. so i show up for my last day, then i get kicked to the curb! pretty much that is all. well, i come back to talk to him in like a month and then i'll have another MRI in like 3 months. then if everythign is good then they will kick me to the curb. sort of. but i'll have follow ups with the endocrinologists and eye doctor, too. hopefully won't see the surgeon i guess unless something bad comes up, is how i understood it from this guy, but who the hell knows. what i do know is that everyone said they will contact me when its time to come in, i do'nt have to remember diddly squat. thank goodness.
then i asked him who the hell gordon was. he is a dosimetrist, i think. i asked a lot of questions, like what does gordon know about tumors and specifically MY tumor. the doctor was funny, he was like, well gordon is a really smart guy so he knows what is up, but he actually doesn't really need to know anything about tumors. he just needs to know who to work the programs that make the treatment plans. the doctor tells him what the objective of the plan is and then gordon goes at it. they go over the scans and the plans and do all kinds of itterations and stuff. and then get it done.
then, i hope i didn't offend the doctor too much, but i was just like, what do YOU know about MY tumor? he says he works with tumors from the neck up. that isn't always the case with doctors like him tho, but because the practice has 15 doctors in it, he is able to focus on an area of interest, like the other doctors, too. so he knows about my tumors.
so then i asked, since the room is all lead all over the place to keep the radiation in there, if they shoot the beam straight into the top of my head how does it not just keep traveling straight through my body all the way down to my feet. not sure if he was annoyed with me by now or not, but he explained that its sort of like a bullet being shot into a wall or something, as the beam gets shot into something, it eventually loses velocity. and that is what gordon is doing in there. he can't get the beams to hit just the target at 100%. he can get them to hit maybe 95%, but 5% of that beam is going to hit somewhere else on its way to the target, or on its way on the other side of the target. in some cases its 80-20, 60-40, etc. but gordon figures out how to minimize those %s that are outside of the target.
again, i maybe be totally wrong about all of this. but its sorta how i interpreted what he wsa saying. \
then the doctor was going on about how advanced technology is these days and how radiation is so much better then it was in the 80s. and how really there was a steep increase of advancements in technology moving up to about 2005 and since then it has sorta leveled off. of course i asked why, and he said its driven by the private sector and computers. he says there hasn't been a ton of advancement in the computer systems that drive these crazy machines. then of course, i am like yeah, well, in 2026, we're all going to be sitting here saying oh, silly 2012!! how naive we were back then and how technology has advanced so much. he laughed.
then i wanted to know how old he is. i'm not sure he is older then me. gonna have to find that out. just tried a google search and was not successful.
so after all that i ate a pint of ben and jerry's chunky monkey - kill me know, and took a 3hr nap. good gracious. there is a reason why my belly is in its own zip code these days. sheesh! but again today i am like what the hell am i trying to do. i am so tired. i could at least TRY to make healthy choices. right? virtually impossible right now.
on monday D'Ann Arthur stayed with us. she is a pro ITU racer. she was racing in canada but had flown in and out of seatac airport. she was super nice and tolerated us quite well it seemed. she went out to dinner with me, janet and the swim coach and liz. she told us some racing stories and she is in med school (fast AND smart!!!) so she told us some stories about that. in the morning i took her to the pool. i walked on the treadmill, the thot of a run about made me fall asleep and then i layed on the mat for a while then went and watched her swim. she is fast. wow, it was interesting to watch her, she just swam along but of course i timed her and she she was doing her cool down at a 1:20 pace. what is that?? then she and eric went for a bike ride all around town. he took her up too many hills for her easy spin kind of day but he said she is fit, she can handle it! then she packed up and went home. this weekend she is racing in chicago! gotta check that out! then in september she is headed to france for the world duathlon championships! she won elite nationals earlier this year, so it will be super exciting for her and we can't wait to cheer her on!
last week i had an MRI. i mentioned that and the sinus infection. what i didn't mention was how it was denied by my insurance company. deemed as not medically necessary. so my initial reaction was wow, wish i would have known that before I actually HAD the MRI. 2nd reaction was huh, maybe really who cares if i have a giant cyst growing in there caused by the radiation pressing all up in my good brain and stuff. i guess knowing that sooner rather then later isn't a big deal. anyway, turns out my doctor had already done some ass kicking over the phone and got it approved, so i got another letter saying it had been approved. i bring that up because today i had another MRI. and the nurse told me how it had not been approved either but then they took care of it, so all is good in insurance land. poor sirus would have had to have postponed 2nd quarter of his junior year of college if we would have had to pay for that out of pocket, holy crap!
yesterday though i was so freaking exhausted. it was unbelievable how tired. like, i was having a tough time driving myself to the appointment. i fell asleep during my appppointment and then hung out in the parking lot for 20 minutes drinking my decaf frappuccino in an attempt to see if it would give me enough energy to make it home. luckily i made it home and into bed without any major injuries to me or anyone else. gracious.
and then today!! so exhausted today, too!! i went to work and was productive again! i like that!! but by the end i was like, dude, i am getting TIRED. i was planning on swimming a little, but instead i got some fruit and yogurt from the whole foods, picked up two of the hats i had been checking out and then went to the hospital. i got there 45 minutes early because i was hoping to get in an our early so i could get my doctor visit done early so i would be on time to the MRI. they are so awesome, too. they took me right back and then i had time to meet with the doctor. he was super relaxed which was nice and sat in the chair next to me chatting. we discussed how my hair started to fall out (hence the hats purchase). he doesn't think any more will fall out while the nurse is like, yeah, once it starts, it just keeps coming out. but she also said she doesn't think i should shave it. says to give it more time because it might be ok.
so i asked him about what happens next. i have 8 appointments left. funny, when i brought it up, i was like, i am almost done! but really i am just over 2/3rd done. still a lot left, but getting there for sure. so i show up for my last day, then i get kicked to the curb! pretty much that is all. well, i come back to talk to him in like a month and then i'll have another MRI in like 3 months. then if everythign is good then they will kick me to the curb. sort of. but i'll have follow ups with the endocrinologists and eye doctor, too. hopefully won't see the surgeon i guess unless something bad comes up, is how i understood it from this guy, but who the hell knows. what i do know is that everyone said they will contact me when its time to come in, i do'nt have to remember diddly squat. thank goodness.
then i asked him who the hell gordon was. he is a dosimetrist, i think. i asked a lot of questions, like what does gordon know about tumors and specifically MY tumor. the doctor was funny, he was like, well gordon is a really smart guy so he knows what is up, but he actually doesn't really need to know anything about tumors. he just needs to know who to work the programs that make the treatment plans. the doctor tells him what the objective of the plan is and then gordon goes at it. they go over the scans and the plans and do all kinds of itterations and stuff. and then get it done.
then, i hope i didn't offend the doctor too much, but i was just like, what do YOU know about MY tumor? he says he works with tumors from the neck up. that isn't always the case with doctors like him tho, but because the practice has 15 doctors in it, he is able to focus on an area of interest, like the other doctors, too. so he knows about my tumors.
so then i asked, since the room is all lead all over the place to keep the radiation in there, if they shoot the beam straight into the top of my head how does it not just keep traveling straight through my body all the way down to my feet. not sure if he was annoyed with me by now or not, but he explained that its sort of like a bullet being shot into a wall or something, as the beam gets shot into something, it eventually loses velocity. and that is what gordon is doing in there. he can't get the beams to hit just the target at 100%. he can get them to hit maybe 95%, but 5% of that beam is going to hit somewhere else on its way to the target, or on its way on the other side of the target. in some cases its 80-20, 60-40, etc. but gordon figures out how to minimize those %s that are outside of the target.
again, i maybe be totally wrong about all of this. but its sorta how i interpreted what he wsa saying. \
then the doctor was going on about how advanced technology is these days and how radiation is so much better then it was in the 80s. and how really there was a steep increase of advancements in technology moving up to about 2005 and since then it has sorta leveled off. of course i asked why, and he said its driven by the private sector and computers. he says there hasn't been a ton of advancement in the computer systems that drive these crazy machines. then of course, i am like yeah, well, in 2026, we're all going to be sitting here saying oh, silly 2012!! how naive we were back then and how technology has advanced so much. he laughed.
then i wanted to know how old he is. i'm not sure he is older then me. gonna have to find that out. just tried a google search and was not successful.
so after all that i ate a pint of ben and jerry's chunky monkey - kill me know, and took a 3hr nap. good gracious. there is a reason why my belly is in its own zip code these days. sheesh! but again today i am like what the hell am i trying to do. i am so tired. i could at least TRY to make healthy choices. right? virtually impossible right now.
on monday D'Ann Arthur stayed with us. she is a pro ITU racer. she was racing in canada but had flown in and out of seatac airport. she was super nice and tolerated us quite well it seemed. she went out to dinner with me, janet and the swim coach and liz. she told us some racing stories and she is in med school (fast AND smart!!!) so she told us some stories about that. in the morning i took her to the pool. i walked on the treadmill, the thot of a run about made me fall asleep and then i layed on the mat for a while then went and watched her swim. she is fast. wow, it was interesting to watch her, she just swam along but of course i timed her and she she was doing her cool down at a 1:20 pace. what is that?? then she and eric went for a bike ride all around town. he took her up too many hills for her easy spin kind of day but he said she is fit, she can handle it! then she packed up and went home. this weekend she is racing in chicago! gotta check that out! then in september she is headed to france for the world duathlon championships! she won elite nationals earlier this year, so it will be super exciting for her and we can't wait to cheer her on!
Friday, August 17, 2012
MRI
i had a bad night last night. yesterday was a rest day in all aspects of that word. no work, no scheduled workouts. i slept a lot. sirus and i went on a date. he knows how to treat a lady. he wanted to do to what he calls the fancy restaurant. i had chicken picatta and it was damn delicious. holy crap it was good. we had to go to the fancy restaurant because the other option was Red Robin and i was not going to go to RR.
later when it was time for bed, everything was fine and dandy. i got into bed, tired and ready to sleep. then i started thinking about the past year and 1/2, long before this whole brain thing became an issue and i just started bawling. full, open mouthed, squinty eyes, no noise, lots of tears bawling. it was the weirdest thing. i couldn't stop. a few weeks back i had a breakdown and the doctors, but that was just a few tears rolling down my cheek, this was a full on bawl. i think i needed it, but eric was asleep and all the lights were off in the house and it was 37406 degrees. so i got out of bed and headed to the couch. i flipped on the laptop and was happy to find a few emails that got my mind of the crying and allowed me to calm down. but good gracious my head was hurting and i was feeling sick to my stomach. eventually i was calm enough that i went back to bed and thankfully fell asleep. later i woke up to find myself drenched in sweat. awesome - night sweats. haven't had any since the 2nd or 3rd week out of the hospital.
needless to say when my alarm went off at 6am to go swimming, i did not get out of bed.
i did however go to work and was very productive so i felt good about that.
i did not swim after work like i had originally planned, instead i went to the hospital for my treatment super early. the nice old man who brings his wife there everyday had brought some photo albums to show me. he showed me photos of his old Model A car with he and his wife dressed in '20s era clothes. so cute! he said they sold it about 8 years ago because the upkeep was too much and his wife wasn't able to get in and out of it any longer. once the car was gone he really started with some wood working projects. he said he had started some about 2 years prior, but once the car was out of the picture he really dove into the wood stuff. he showed me photos of some amazing bird houses including one that looked like his grandfather's house! he also made some of light houses that he and his wife had visited and a lot with license plates for the roof. but he also made all kinds of beautiful wooden lamps, bowls, potpurri holders, vases and clocks. he made an amazing grandfather clock for his wife. she designed it and he made it. it was very neat to look through his book and hear the stories behind all of the projects. his wife came back from her treatment and joined in the conversation tell me about which were her favorites and about some other wood pieces they have at their house. she went on to describe some of the wooden pull and push toys he has made for the great grandkids, too!
then i got the news on the mri. good news is that there isn't anything going on with the tumor. the not bad news is that i have a sinus infection. so i have to wait that out. i have another mri next week so they will check on it then, but hopefully it will be better by then.
yesterday i talked to the radiation tech about my hair. it hasn't started falling out and she says based on her observation everyone's falls out. it could even start after treatment is over. she says if it hasn't fallen out by 3 months after i am done then i am probably ok. but until then, i shouldn't try holding my breath at all. so based on lavonne's suggestion, i am going to pack a sharpie marker in my gym bag and purse for emergency cover ups! i also saw some cute hats at Whole Foods that i can run in and get on a moment's notice if necessary.
oh but the drama of today's treatment! they did xrays yesterday, but apparently the doctor didn't like how things were lined up, so they wanted to do more xrays today. once they took the first set, i had some guy named gordon come in and started poking my head. he said he was the one who wrote my treatment plan (wait, i thought the doctor did that!) but he was trying to get me to move around in the mask. i can move a little but its not a ton. but they were looking for millimeters so i guess whatever. so they took the mask off and there was gordon and my doctor and like 3 techs all in there. they put a shim under my head then put the mask back on. wow! super tight now. can't open my eyes, i barely could before and i definitly can't talk any more. squish. i could feel all of my face juices getting on the inside of that mask! more xrays and then gordon came in to say it looked better. sweet.
11 more to go! maybe i will start a pool to guess when the hairs will start coming out.
later when it was time for bed, everything was fine and dandy. i got into bed, tired and ready to sleep. then i started thinking about the past year and 1/2, long before this whole brain thing became an issue and i just started bawling. full, open mouthed, squinty eyes, no noise, lots of tears bawling. it was the weirdest thing. i couldn't stop. a few weeks back i had a breakdown and the doctors, but that was just a few tears rolling down my cheek, this was a full on bawl. i think i needed it, but eric was asleep and all the lights were off in the house and it was 37406 degrees. so i got out of bed and headed to the couch. i flipped on the laptop and was happy to find a few emails that got my mind of the crying and allowed me to calm down. but good gracious my head was hurting and i was feeling sick to my stomach. eventually i was calm enough that i went back to bed and thankfully fell asleep. later i woke up to find myself drenched in sweat. awesome - night sweats. haven't had any since the 2nd or 3rd week out of the hospital.
needless to say when my alarm went off at 6am to go swimming, i did not get out of bed.
i did however go to work and was very productive so i felt good about that.
i did not swim after work like i had originally planned, instead i went to the hospital for my treatment super early. the nice old man who brings his wife there everyday had brought some photo albums to show me. he showed me photos of his old Model A car with he and his wife dressed in '20s era clothes. so cute! he said they sold it about 8 years ago because the upkeep was too much and his wife wasn't able to get in and out of it any longer. once the car was gone he really started with some wood working projects. he said he had started some about 2 years prior, but once the car was out of the picture he really dove into the wood stuff. he showed me photos of some amazing bird houses including one that looked like his grandfather's house! he also made some of light houses that he and his wife had visited and a lot with license plates for the roof. but he also made all kinds of beautiful wooden lamps, bowls, potpurri holders, vases and clocks. he made an amazing grandfather clock for his wife. she designed it and he made it. it was very neat to look through his book and hear the stories behind all of the projects. his wife came back from her treatment and joined in the conversation tell me about which were her favorites and about some other wood pieces they have at their house. she went on to describe some of the wooden pull and push toys he has made for the great grandkids, too!
then i got the news on the mri. good news is that there isn't anything going on with the tumor. the not bad news is that i have a sinus infection. so i have to wait that out. i have another mri next week so they will check on it then, but hopefully it will be better by then.
yesterday i talked to the radiation tech about my hair. it hasn't started falling out and she says based on her observation everyone's falls out. it could even start after treatment is over. she says if it hasn't fallen out by 3 months after i am done then i am probably ok. but until then, i shouldn't try holding my breath at all. so based on lavonne's suggestion, i am going to pack a sharpie marker in my gym bag and purse for emergency cover ups! i also saw some cute hats at Whole Foods that i can run in and get on a moment's notice if necessary.
oh but the drama of today's treatment! they did xrays yesterday, but apparently the doctor didn't like how things were lined up, so they wanted to do more xrays today. once they took the first set, i had some guy named gordon come in and started poking my head. he said he was the one who wrote my treatment plan (wait, i thought the doctor did that!) but he was trying to get me to move around in the mask. i can move a little but its not a ton. but they were looking for millimeters so i guess whatever. so they took the mask off and there was gordon and my doctor and like 3 techs all in there. they put a shim under my head then put the mask back on. wow! super tight now. can't open my eyes, i barely could before and i definitly can't talk any more. squish. i could feel all of my face juices getting on the inside of that mask! more xrays and then gordon came in to say it looked better. sweet.
11 more to go! maybe i will start a pool to guess when the hairs will start coming out.
Thursday, August 16, 2012
today will be 16
more than 1/2 way done! hooray! now it seems like it is going fast. tuesday was doctor day again and when he walked in i had on my hat and he was like, take the hat off, lets look at your hair. my hair is all there! i think this is a good sign that it won't be falling out. i am optimistic although there is still time.
my head has been hurting though. i had an MRI yesterday and again i fell asleep during it! but at doctor day he said the best way to figure out a headache was to get an mri so i'll probably find out today if there is anything going on. he did say to drink the NUUN and to stay hydrated since its so hot these days. it is hot.
i have no work today and no workout. i was going to throw in the towel on the training, and i did, sort of. i am still working with my coach but trying some new strategies. one being doing my workouts in the morning instead of the afternoon. i swam before work yesterday and that seemed to work pretty well. i put on the swim cap yesterday but managed only 200 before taking it off because it was hurting my head. it puts a lot of pressure on my forehead where i have all those titanium plates. i was worried when i took it off that i would wind up tearing out huge chunks of hair that would then escape throughout the pool but no hairs came out! later in the shower at the gym i was worried again my hairs would all fall out. i am not prepared for a back up solution, so i would have had to continue to work with a giant bald spot i guess. maybe i would have called in and said i was going to be late because i would need to go get a hat or spray paint or something. but that is about all that is going on with my health. oh yeah, except this thing on my neck and the weird bump on my calf. should i be worried about those? gah!!! but i did register for two sprint triathlons. i had deferred entries from last year when i hurt my back so i said what the hell. i had so much fun at black diamond, and who cares if i soft pedal and walk. i am excited!! wouldn't it be exciting though if running out of the water, ripping off my swim cap i also pulled out like 1/2 my hair!! hope they catch that on film!
oooh! i want eric to do more house projects! since seamus won't let me clean her room, i have nothing left to organize!! our room (paint, lights, fan, curtain rod, curtains) is done. oh, except the shelf that eric needs to put up. i just tried to get him to put it up, but he flat out said no. he is taking the kids black berry picking. i am going to take a nap. sirus's floor is all put in! loving it!! oh i want eric to just tear all the damn carpet up and put some flooring in. we aren't going to shell out for hardwoods until the kids have graduated from college anyway, so we should just do it. these carpets - '80s white - are so cat puke, dirt, crayon, marker, coffee stained! that doesn't even include the mystery stains that the house came with.
i dreamt last night that i was somewhere near a river and there were elephants swimming up river. first there were like only a few, but then it turned into hundreds of them, all swimming up river. not sure what they were doing. the night before i dreamt that two different people i worked with complained about how the people in the apartments next to where they lived kept them awake by using electric pencil sharpeners all through the night. what does it mean???
my head has been hurting though. i had an MRI yesterday and again i fell asleep during it! but at doctor day he said the best way to figure out a headache was to get an mri so i'll probably find out today if there is anything going on. he did say to drink the NUUN and to stay hydrated since its so hot these days. it is hot.
i have no work today and no workout. i was going to throw in the towel on the training, and i did, sort of. i am still working with my coach but trying some new strategies. one being doing my workouts in the morning instead of the afternoon. i swam before work yesterday and that seemed to work pretty well. i put on the swim cap yesterday but managed only 200 before taking it off because it was hurting my head. it puts a lot of pressure on my forehead where i have all those titanium plates. i was worried when i took it off that i would wind up tearing out huge chunks of hair that would then escape throughout the pool but no hairs came out! later in the shower at the gym i was worried again my hairs would all fall out. i am not prepared for a back up solution, so i would have had to continue to work with a giant bald spot i guess. maybe i would have called in and said i was going to be late because i would need to go get a hat or spray paint or something. but that is about all that is going on with my health. oh yeah, except this thing on my neck and the weird bump on my calf. should i be worried about those? gah!!! but i did register for two sprint triathlons. i had deferred entries from last year when i hurt my back so i said what the hell. i had so much fun at black diamond, and who cares if i soft pedal and walk. i am excited!! wouldn't it be exciting though if running out of the water, ripping off my swim cap i also pulled out like 1/2 my hair!! hope they catch that on film!
oooh! i want eric to do more house projects! since seamus won't let me clean her room, i have nothing left to organize!! our room (paint, lights, fan, curtain rod, curtains) is done. oh, except the shelf that eric needs to put up. i just tried to get him to put it up, but he flat out said no. he is taking the kids black berry picking. i am going to take a nap. sirus's floor is all put in! loving it!! oh i want eric to just tear all the damn carpet up and put some flooring in. we aren't going to shell out for hardwoods until the kids have graduated from college anyway, so we should just do it. these carpets - '80s white - are so cat puke, dirt, crayon, marker, coffee stained! that doesn't even include the mystery stains that the house came with.
i dreamt last night that i was somewhere near a river and there were elephants swimming up river. first there were like only a few, but then it turned into hundreds of them, all swimming up river. not sure what they were doing. the night before i dreamt that two different people i worked with complained about how the people in the apartments next to where they lived kept them awake by using electric pencil sharpeners all through the night. what does it mean???
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| i wore a jean jacket on my first day back at work! |
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| the garden - its been rough this year in the WA for gardens, but we have gotten lots of lettuce, spinach, some peas, green onions and a zucchini! |
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| cheer camp! |
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| old fan that i hated in our bedroom. you can see the new paint and new lights! |
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| new fan. its not exactly what i wanted but it was only $42 compared to the $400 one i really want. i can wait! 1 fan down, 5 to go. wow, we have a lot of ugly fans in our house! |
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| Meltaways from Gorants!! Angie brought them all the way from Ohio!! Love them!! Love her!! |
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| golf camp!!! |
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| sirus's new floor! |
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| obligatory cat photo, but you can see paint and new lamp shade in the background! |
Sunday, August 12, 2012
what to do what to do
eric ripped up sirus's carpet today. sirus has allergies, not to cats but to other things and we have been talking about taking the carpet out of his room anyway. we hesitated because we would really like to put in real hardwoods throughout the house someday. but we decided it was time for his room, just a quick cheap change out. the kids and i went to ikea to pick up some flooring. we got there early and there was no line for the kids area so i checked them in. while we were standing there, the guy in front of us had an obvious c shaped scar on his scalp - brain surgery! i was like oh! and almost said something but thought better of it. then he turned and he had an identical scar like mine on the other side!! whoa!! that guy had been through a lot! wow!
dropped the kids off and headed in. found a few things i didn't go there to get, found a shelf for our bedroom, and then found the flooring. wrote the secret isle and bin numbers and boogied on out of there. time was running out and i needed to check out and get the kids.
then i came home and slept for three hours. i was planning on going for run but i couldn't do it. i was so happy with my bike ride yesterday but it was a struggle to get out there. and then last night we were up super late to watch the meteor shower and today, i just couldn't get it done. the meteors were fantastic!! when we were kids we watched a few but i hadn't ever seen anything like last night! they were huge and so bright and would streak across 1/2 the sky! totally amazing. poor sirus slept through the whole thing but managed to wake up right as we were pulling into the driveway, so he and eric went out on the back porch and watched for a while. sirus says he saw one but eric is pretty sure he just wanted to go back inside to go to bed.
which brings me to i think i have to stop trying to "train" for a while. too tired. and throw work in there and its too much. feeling a little wussy but what am i going to do? i'll tell you what i AM doing, i am getting FAT. holy crap!! i realized the other day that i am chowing down and i am pretty sure the reason is because i am so freaking tired that i am trying to get myself some energy. FAT. and oh i've had a headache since yesterday too! what is that about! not debilitating, just constant.
20 year high school reunion coming up in a few months and not totally sure i am going to go. totally fat and potentially bald. waaah!!!!
omg - i am such a complainer!!!
dropped the kids off and headed in. found a few things i didn't go there to get, found a shelf for our bedroom, and then found the flooring. wrote the secret isle and bin numbers and boogied on out of there. time was running out and i needed to check out and get the kids.
then i came home and slept for three hours. i was planning on going for run but i couldn't do it. i was so happy with my bike ride yesterday but it was a struggle to get out there. and then last night we were up super late to watch the meteor shower and today, i just couldn't get it done. the meteors were fantastic!! when we were kids we watched a few but i hadn't ever seen anything like last night! they were huge and so bright and would streak across 1/2 the sky! totally amazing. poor sirus slept through the whole thing but managed to wake up right as we were pulling into the driveway, so he and eric went out on the back porch and watched for a while. sirus says he saw one but eric is pretty sure he just wanted to go back inside to go to bed.
which brings me to i think i have to stop trying to "train" for a while. too tired. and throw work in there and its too much. feeling a little wussy but what am i going to do? i'll tell you what i AM doing, i am getting FAT. holy crap!! i realized the other day that i am chowing down and i am pretty sure the reason is because i am so freaking tired that i am trying to get myself some energy. FAT. and oh i've had a headache since yesterday too! what is that about! not debilitating, just constant.
20 year high school reunion coming up in a few months and not totally sure i am going to go. totally fat and potentially bald. waaah!!!!
omg - i am such a complainer!!!
Saturday, August 11, 2012
its not cancer
on tuesday i met with the radiation doctor. tuesdays are doctor days.
i had questions for him, most of which i told the nurse and then promptly forgot once the doctor came in. luckily the nurse was able to prompt me when i would forget.
he showed me the treatment plan. this is a my interpretation of what the treatment plan looked like. the purple box is where the highest dosage of radiation is hitting. oh, i should say that those are my eyeballs on the top and my ears on the sides. he explained it as being like a topographic map. each line signifies a drop in radiation dosage. the closer the lines, the steeper the drop. there were more lines in the plan, but this is the gist. the areas that are by the red line, that are closest to the edges are where i will possibly lose my hair.
then i flat out asked him, or told him, that i do not have cancer. i said, even though i am at swedish cancer institute and they gave me a ton of information about cancer and they keep calling it cancer i was just like, i don't have cancer. right? correct. i do not have cancer. he said that they normally just call anything in the brain a tumor, well, anything that originates in the brain. i may be wrong here, but the way i understand it is that benign brain tumors start in the brain and stay there. they do not spread to other parts of the brain, they don' go anywhere. my tumor acts malignant because it can come back and it can push it self against other parts of the brain and can cause all kinds of problems. it is not malignant because it does not spread. but brain tumors spread by way of spinal fluid so if they spread they only go to other parts of the brain or the spinal column. if i am correct, and i may very well not be, they call it brain cancer if the cancer originate somewhere else and travels to the brain. there are certain cancers that are more likely to travel to the brain than others. i guess.
like i said, all of this could be 100% wrong but its how i understood it when he explained it to me.
the doctor had his fingers taped. i asked him if he broke his fingers, sure 'nuffs he had, hammered them and smashed them. lots more questions about that to be asked on this coming tuesday.
oh good gracious, today i was so tired but i headed out on a bike ride. it was 80 degrees and sunny and amazing. i was planning on driving to the trail head. for the life of me, i could not get the front wheel off of my bike. i flipped the brake thingy, i loosened the skewer. i loosened it so much that the one piece fell off! i could not get that wheel off. i had to go ask eric for help. i was really worried i was having a serious brain tumor moment. why couldn't i get the wheel off, i was actually very concerned. luckily when eric came to help, he couldn't get the wheel off either! hooray! it wasn't me. he just banged the wheel and off it popped!
i had questions for him, most of which i told the nurse and then promptly forgot once the doctor came in. luckily the nurse was able to prompt me when i would forget.
he showed me the treatment plan. this is a my interpretation of what the treatment plan looked like. the purple box is where the highest dosage of radiation is hitting. oh, i should say that those are my eyeballs on the top and my ears on the sides. he explained it as being like a topographic map. each line signifies a drop in radiation dosage. the closer the lines, the steeper the drop. there were more lines in the plan, but this is the gist. the areas that are by the red line, that are closest to the edges are where i will possibly lose my hair.
like i said, all of this could be 100% wrong but its how i understood it when he explained it to me.
the doctor had his fingers taped. i asked him if he broke his fingers, sure 'nuffs he had, hammered them and smashed them. lots more questions about that to be asked on this coming tuesday.
oh good gracious, today i was so tired but i headed out on a bike ride. it was 80 degrees and sunny and amazing. i was planning on driving to the trail head. for the life of me, i could not get the front wheel off of my bike. i flipped the brake thingy, i loosened the skewer. i loosened it so much that the one piece fell off! i could not get that wheel off. i had to go ask eric for help. i was really worried i was having a serious brain tumor moment. why couldn't i get the wheel off, i was actually very concerned. luckily when eric came to help, he couldn't get the wheel off either! hooray! it wasn't me. he just banged the wheel and off it popped!
Thursday, August 09, 2012
Xterra Black Diamond
on sunday i raced in the World Championships! Ok, not really, but it was MY World Championships1
If you recall, eric and i were both supposed to race the ITU Cross World Championships in May. But due to my "condition" we weren't able to go, despite Team USA super suits, air plane tickets, hotel and car reservations. All those things were canceled except the super suits. eric and i were stuck with Team USA super suits with our names on the fronts and the arses. I wanted to wear that super suit!!!
a while back when i started to feel better and started to get outside for some runs and biking, i decided that I would race at Black Diamond. they offer a 1/2 distance which i decided would be perfect. i had done this race 4 times previously: 1x DNF, 2x full distance, 1x relay and i was excited to add the 1/2 distance World Championship!
leading up the race i swam a few times, and rode my mountain bike a few times and ran a few times. any intensity put my on my arse, so i was really trying to take it easy. i wasn't totally sure i'd be able to finish the race, but since i had no idea what radiation would do to me, i kept all options open. xtie pre rode with me the day before the race, just in case i decided it was going to be too much and she would jump in and do the race with me as a relay. but i felt so good after the pre ride that i was pretty excited about the race.
that evening we went to mat's house for a BBQ. he was racing in the morning as well, but he still cooked for us and showed us his mad slack line skillz.
that night, once the kids were asleep and eric and i were chillin', we heard some music outside. it was super hot so we had the windows open and that music was way loud. it was after 9pm, which in our opinion was too late for that kind of racket! so eric put on the head lamp and stormed out the back door. he was on a mission to find out whichever neighbor it was and to tell them to shut it. about 20 minutes later her came back saying it wasn't in our hood and was coming from somewhere over there. he pulled out all of the local papers trying to find out what event this could possibly be since it turned out to be live music. we couldn't find anything about it. so we went to bed. the music went until midnight, and that combined with being a little nervous, i couldn't sleep! once the music was done though, i was able to drift off.
i woke up before my alarm and put on my super suit!
i switched out my normal PBJ race day breakfast for 2 eggs and 1/2 banana with almond butter. i also sipped some heed. it was going to be a hot one so i really needed to make sure i was hydrated.
we got to the race site and i was so happy to see janet! and charity! and and marci! and mel! and mat! and nigel! and kyle! and ian! and Amy & Tom! race day is so fun! so happy to see so many friends!
they sent the full distance swimmers off first, and then the 1/2 distance swimmers about 10 minutes later. i was able to get in the water for a few minutes and get in a few strokes but not a real warm up. the water was perfect!
and we were off! i was happy with my swim. i wasn't sure how i was going to manage, or if i would have the endurance to swim the whole thing, but i did! i was swimming amazingly straight and i just kept going. i was so happy to be in the water and feeling so good!
I realized while setting up transition that i hadn't done a triathlon in over a year - since chelan man 2011. whoa! even though i didn't wear socks, my T1 was soooo slow. i felt like i as in there forever!
i headed out on the bike, not sure how much power or speed i would have. but i passed a few people right away and was passed by a few right away. it was a bit of a cluster for the first 1/3 or so of the bike since the 1/2 distance people (me) were coming out of the water with the full distance people. i am usually towards the back of the pack coming out of the water, but because of the mix of the two groups, i was in a big group. there were a ton of clusters and people getting off their bikes at every root or tiny hill. it was a mess. eventually it cleared up and things got better. i was always riding with someone and that always makes it extra fun. during the last 3rd of the race i realized my head didn't hurt. it didn't hurt AT ALL. i realized that oh my gosh, i have been riding for quite a few years with my head hurting and just assuming that was part of mountain biking. it wasn't like the last two rides before we found out about the tumor, but there was jarring discomfort that i just assumed was normal. it wasn't normal! mountain biking is FUN and can be done without your brain jiggling around!!
eventually i got to the point during the bike where i was like, omg, thank goodness i don't have to do a 2nd lap because my arms were getting tired. everything else felt pretty good, but my arms were getting tired.
T2 took way longer then it should have. i stayed with no socks, but stood there trying to decide if i should wear my visor or my sun glasses or both. i went with the visor.
the run was terrible. well, it started out terrible. it started on mowed lawn. i was so slow. i was running but i wasn't moving. janet and her kids were there to cheer me along and i was like, am i walking? why is walking so hard? but i was running. i kept going until the first hill. i walked that whole hill. oh it was tough. but i ran, well, jogged once i got to the top. i wound up walking all of the hills, at least most of them. i eventually met up with a guy and he lead and i followed for a while. it was nice to run with someone and chit chat. i was just trying to get the run done, the body wasn't doing anything awesome to go any faster. eventually he left me behind on a hill.
the best part was the 2nd small loop. it went by so quickly and next thing i was going down the gravel hill and off to the finish! a few times during the run i looked back to see if anyone was near by, but i really didn't have anything in me to push it any harder. i didn't even pick it up towards the finish line. i didn't leave it all out on the course, i just didn't have it to leave out there, but i did go as hard as i could and took the first opportunity to sit down. i recovered quickly and was up cheering on the rest of the racers coming in.
i was super happy with my race. for one thing - i was happy that i was even able to do it, and able to finish! i am so lucky to be well enough to do such fun things like mountain bike and swim and run. there are plenty of people without brain tumors and radiation who aren't healthy enough to do those things, and there are so many people with brain tumors and going through radiation who aren't able to walk, talk, read or any of those things. i think about that every day. this brain tumor thing is a pain in the ass and it gets in the way sometimes but i am so lucky that it just caused a small bump in the road and didn't take away my life.
2nd of all, i am happy that i was able to actually race. even though i am no where near where i was before, i pushed myself, and in my mind felt like i was being competitive. even though i stopped to walk and wasn't able to give any last ditch efforts at the end, i never gave up. in my mind, i raced the whole thing.
3rd of all - i was 2nd overall woman in the 1/2 distance! how did that happen? totally unexpected and such a great surprise!
mat won the overall for the full distance, and tom came in 3rd. it was a good day for both of them!
the kids raced too! it was their first event of the year, and sadly probably the last. the kids tris are so stinking expensive. they had so much fun tho! sirus has a little bit of a competitive streak in him!
today marks day 13 of 29 radiation treatments. it took 3 days to recover from the race. i had to save all my energy to go to work! i went 3 days this week! each day i came home and promptly fell asleep right up until my radiation appointment and then slept again after my appointment. i even fell asleep during my MRI on Monday and the MRI machine is LOUD. on tuesday i stayed in bed most of the day! next week i will work the same hours and then hopefully i will start adding in more days each week. i'll hopefully gain more endurance so i am not so exhausted after, so i can hopefully begin working longer days, too. the radiation will start compounding more too, and i am feeling the effects of that. i am tired, i'm exhausted actually and my stomach hurts, but it will all be better in a few weeks.the doctor says the best way to combat the exhaustion is to stay active. i will have to find a happy medium there since i promptly need a nap after activity, and i want to have enough energy to go to work, which also causes me to need a nap. the doctor says the hairs will start falling out next week, too, or maybe the week after or so. that is going to be interesting!
If you recall, eric and i were both supposed to race the ITU Cross World Championships in May. But due to my "condition" we weren't able to go, despite Team USA super suits, air plane tickets, hotel and car reservations. All those things were canceled except the super suits. eric and i were stuck with Team USA super suits with our names on the fronts and the arses. I wanted to wear that super suit!!!
a while back when i started to feel better and started to get outside for some runs and biking, i decided that I would race at Black Diamond. they offer a 1/2 distance which i decided would be perfect. i had done this race 4 times previously: 1x DNF, 2x full distance, 1x relay and i was excited to add the 1/2 distance World Championship!
leading up the race i swam a few times, and rode my mountain bike a few times and ran a few times. any intensity put my on my arse, so i was really trying to take it easy. i wasn't totally sure i'd be able to finish the race, but since i had no idea what radiation would do to me, i kept all options open. xtie pre rode with me the day before the race, just in case i decided it was going to be too much and she would jump in and do the race with me as a relay. but i felt so good after the pre ride that i was pretty excited about the race.
 |
| xtie avoiding wet feet |
i woke up before my alarm and put on my super suit!
i switched out my normal PBJ race day breakfast for 2 eggs and 1/2 banana with almond butter. i also sipped some heed. it was going to be a hot one so i really needed to make sure i was hydrated.
we got to the race site and i was so happy to see janet! and charity! and and marci! and mel! and mat! and nigel! and kyle! and ian! and Amy & Tom! race day is so fun! so happy to see so many friends!
they sent the full distance swimmers off first, and then the 1/2 distance swimmers about 10 minutes later. i was able to get in the water for a few minutes and get in a few strokes but not a real warm up. the water was perfect!
and we were off! i was happy with my swim. i wasn't sure how i was going to manage, or if i would have the endurance to swim the whole thing, but i did! i was swimming amazingly straight and i just kept going. i was so happy to be in the water and feeling so good!
 |
| only moments after this, i was doing the robot. |
i headed out on the bike, not sure how much power or speed i would have. but i passed a few people right away and was passed by a few right away. it was a bit of a cluster for the first 1/3 or so of the bike since the 1/2 distance people (me) were coming out of the water with the full distance people. i am usually towards the back of the pack coming out of the water, but because of the mix of the two groups, i was in a big group. there were a ton of clusters and people getting off their bikes at every root or tiny hill. it was a mess. eventually it cleared up and things got better. i was always riding with someone and that always makes it extra fun. during the last 3rd of the race i realized my head didn't hurt. it didn't hurt AT ALL. i realized that oh my gosh, i have been riding for quite a few years with my head hurting and just assuming that was part of mountain biking. it wasn't like the last two rides before we found out about the tumor, but there was jarring discomfort that i just assumed was normal. it wasn't normal! mountain biking is FUN and can be done without your brain jiggling around!!
 |
| coming back in on the bike |
T2 took way longer then it should have. i stayed with no socks, but stood there trying to decide if i should wear my visor or my sun glasses or both. i went with the visor.
the run was terrible. well, it started out terrible. it started on mowed lawn. i was so slow. i was running but i wasn't moving. janet and her kids were there to cheer me along and i was like, am i walking? why is walking so hard? but i was running. i kept going until the first hill. i walked that whole hill. oh it was tough. but i ran, well, jogged once i got to the top. i wound up walking all of the hills, at least most of them. i eventually met up with a guy and he lead and i followed for a while. it was nice to run with someone and chit chat. i was just trying to get the run done, the body wasn't doing anything awesome to go any faster. eventually he left me behind on a hill.
 |
| shuffling |
 |
| My favorite photo of the day! |
2nd of all, i am happy that i was able to actually race. even though i am no where near where i was before, i pushed myself, and in my mind felt like i was being competitive. even though i stopped to walk and wasn't able to give any last ditch efforts at the end, i never gave up. in my mind, i raced the whole thing.
3rd of all - i was 2nd overall woman in the 1/2 distance! how did that happen? totally unexpected and such a great surprise!
mat won the overall for the full distance, and tom came in 3rd. it was a good day for both of them!
 |
| sirus supports his favorite racer, mat! |
 |
| Tom, Mat and Bruce on the flat, grass podium! |
the kids raced too! it was their first event of the year, and sadly probably the last. the kids tris are so stinking expensive. they had so much fun tho! sirus has a little bit of a competitive streak in him!
 |
| getting their game faces on! |
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| sirus coming in right in front of seamus! |
today marks day 13 of 29 radiation treatments. it took 3 days to recover from the race. i had to save all my energy to go to work! i went 3 days this week! each day i came home and promptly fell asleep right up until my radiation appointment and then slept again after my appointment. i even fell asleep during my MRI on Monday and the MRI machine is LOUD. on tuesday i stayed in bed most of the day! next week i will work the same hours and then hopefully i will start adding in more days each week. i'll hopefully gain more endurance so i am not so exhausted after, so i can hopefully begin working longer days, too. the radiation will start compounding more too, and i am feeling the effects of that. i am tired, i'm exhausted actually and my stomach hurts, but it will all be better in a few weeks.the doctor says the best way to combat the exhaustion is to stay active. i will have to find a happy medium there since i promptly need a nap after activity, and i want to have enough energy to go to work, which also causes me to need a nap. the doctor says the hairs will start falling out next week, too, or maybe the week after or so. that is going to be interesting!
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| mat running it in to a first place overall finish |
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| LUNA Chix hanging all over the fastest guy of the day |
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| me and marci in the morning, before it started to get hot |
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| sirus doing what he does best |
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| LUNA love! |
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| Long time no see, happy to see today! |
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