someone posted this video of what its like to get radiation on your brains.
the machine i had was a little different and i wore a shirt (yikes!) so it was a little different, but definitely similar.
Showing posts with label tumor. Show all posts
Showing posts with label tumor. Show all posts
Saturday, March 22, 2014
Monday, March 10, 2014
its hard for some people
now that i am no longer on Team LUNA Chix, I have been wondering what I will do with my copious free time. so i have decided to start volunteering for an organization that helps people with brain tumors and their families in all kinds of ways. they help them with everythign from finding the right doctors, figuring out their finances, researching treatment options, etc. they do all kinds of good work. i figured, what they hey, i'll see what i can do for them.
in my volunteer interview they asked for my resume and then started going through a list of projects they would like help with. she was trying to pick out the exciting and interesting projects and i stopped her right there. i was like, whoa there honey! i think all day long at work. give me something easy! sign me up for the monotonous stuff that none of you want to do but need to get done.
so today was my first day and my first job was to make copies! this was all very exciting until she asked me how proficient i was with a copier. what? WHAT? ugh. i am so not proficient with a copier!! i had to push this button and that button, select color, select one to two sided, select two to two sided, black and white, click 1, 8 copies of that, 9 of that, click save, click enter, scan, flip, scan, print! omg, don't forget to add the staple!! i had to have her run me through it like 5 times, at which time i almost told her about my first job in seattle after college when i worked at the limited and could not FOR THE LIFE OF ME figure out the cash register!! they put me at the register because i wasn't friendly enough to be out on the floor, but for some reason it was so complicated! it was not intuitive at all. there i was with my rediculously expensive fancy east coast college degree and i had an 18 yr old telling me "it's ok, its hard for some people." AND IT WAS HARD FOR ME!!! after a few weeks they put me "on call" and then never called me.
luckily, after about the 4th time through how to use the copier, and me saying oh dear, yikes, and oh no a bunch of times, she did kind of joke - oh i hope this isn't hurting your brain tumor!, but omg, i was fighting back the PTSD of the Limited nightmare of 1996!!
but i copied and collated for an hour, only messing up twice!! then i stuffed envelopes, and shredded documents. yeah, that went well until i broke the shredder mid-shred. it just stopped. it wasn't jammed, i told her i think maybe it was over heated. i had already emptied the shreds twice and made a mess all over the office, so i asked if there was a vacuum and went ahead and vacuumed the whole office.
and then i left. and i will be back next week!!
in my volunteer interview they asked for my resume and then started going through a list of projects they would like help with. she was trying to pick out the exciting and interesting projects and i stopped her right there. i was like, whoa there honey! i think all day long at work. give me something easy! sign me up for the monotonous stuff that none of you want to do but need to get done.
so today was my first day and my first job was to make copies! this was all very exciting until she asked me how proficient i was with a copier. what? WHAT? ugh. i am so not proficient with a copier!! i had to push this button and that button, select color, select one to two sided, select two to two sided, black and white, click 1, 8 copies of that, 9 of that, click save, click enter, scan, flip, scan, print! omg, don't forget to add the staple!! i had to have her run me through it like 5 times, at which time i almost told her about my first job in seattle after college when i worked at the limited and could not FOR THE LIFE OF ME figure out the cash register!! they put me at the register because i wasn't friendly enough to be out on the floor, but for some reason it was so complicated! it was not intuitive at all. there i was with my rediculously expensive fancy east coast college degree and i had an 18 yr old telling me "it's ok, its hard for some people." AND IT WAS HARD FOR ME!!! after a few weeks they put me "on call" and then never called me.
luckily, after about the 4th time through how to use the copier, and me saying oh dear, yikes, and oh no a bunch of times, she did kind of joke - oh i hope this isn't hurting your brain tumor!, but omg, i was fighting back the PTSD of the Limited nightmare of 1996!!
but i copied and collated for an hour, only messing up twice!! then i stuffed envelopes, and shredded documents. yeah, that went well until i broke the shredder mid-shred. it just stopped. it wasn't jammed, i told her i think maybe it was over heated. i had already emptied the shreds twice and made a mess all over the office, so i asked if there was a vacuum and went ahead and vacuumed the whole office.
and then i left. and i will be back next week!!
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.
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