There is a brain cancer walk on may 7 in the bay area! The bay area Huerta contingency has set up a team that you can donate thru.
Go to braintumor.org. Click on donate. Search by team name- numb skullz
Weeeeeee!
Saturday, April 30, 2011
Wednesday, April 27, 2011
do's and don'ts of dealing with us sicko people
MOOCHING OF INTERNET SITE - Work (not sure if i should call it former work or work, or place i mooch internet- im working on that)
hello :)
first i want to thank everyone for being nice about this blog. i am really excited about the non-profit and excited to organize a party :) i like parties
There are a few things i have learned during this past year of cancer life. I thought I would share them. if i say something that you have done, just know im not talking about you, you are perfect :)
DON'TS
1) Most imnportant - Don't tell someone with a terminal illness that, "well, i (you) could get hit by a bus tomorrow!) i know this is supposed to make me feel better, showing how bad bus drivers are i guess, but guess what, i could get hit by a bus too! so that makes me doubly fucked. Yay! also, how many people do you actually know who got hit by a bus and died. i havent really heard about many but maybe since i live in LA and no one really takes the bus i have a false sense of safety in the bus drivers. maybe in say san francisco its different. anyone- no dying bus talk.
2) dont tell someone who is on chemo that they look good. for the most part it is such a lie! i know i look like shit. all green and dirty (who has the energy to take a shower when you are filling your body with toxins). if you tell me i look like shit when i do look like shit, when you tell me i look good, it means so much more. oh, but you can always tell me i look skinny. heehee
3) dont ever say to someone who is on chemo that "you always seem tired and how could someone be that tired all the time. snap out of it." or say "wow you sleep a lot, you must be lazy" really? hmmmm i think that one may be self explanatory. of course sometimes i am lying and i just want you to leave me alone :) just kidding, i think. but for the most part i am really fucking tired. again, toxins rushing through this body. swooshing around in the body. like if you drank a lot of water and you think that you drank too much water and you swear you could hear the water moving inside your tummy (maybe that is just me but lets pretend you feel the same). not only do i not want to puke when i sleep, (positive), i also dont have to think that, crap i feel lazy (see above). one thing that goes through, i think, every person with cancer's brain is that no day can be wasted b/c you never know what tomorrow might bring (i could get hit by a bus!). it feels wasteful to stay on the couch for five days every twenty eight days (my chemo cycle for the next year and a half). but fuck it. bring on the couch.
DO
1) say i look skinny ;)
2) say i look skinny while i am eating a pint of ice cream
3) the opposite of the don'ts
yay! do and don't of dealing with cancer people. well, me.
hello :)
first i want to thank everyone for being nice about this blog. i am really excited about the non-profit and excited to organize a party :) i like parties
There are a few things i have learned during this past year of cancer life. I thought I would share them. if i say something that you have done, just know im not talking about you, you are perfect :)
DON'TS
1) Most imnportant - Don't tell someone with a terminal illness that, "well, i (you) could get hit by a bus tomorrow!) i know this is supposed to make me feel better, showing how bad bus drivers are i guess, but guess what, i could get hit by a bus too! so that makes me doubly fucked. Yay! also, how many people do you actually know who got hit by a bus and died. i havent really heard about many but maybe since i live in LA and no one really takes the bus i have a false sense of safety in the bus drivers. maybe in say san francisco its different. anyone- no dying bus talk.
2) dont tell someone who is on chemo that they look good. for the most part it is such a lie! i know i look like shit. all green and dirty (who has the energy to take a shower when you are filling your body with toxins). if you tell me i look like shit when i do look like shit, when you tell me i look good, it means so much more. oh, but you can always tell me i look skinny. heehee
3) dont ever say to someone who is on chemo that "you always seem tired and how could someone be that tired all the time. snap out of it." or say "wow you sleep a lot, you must be lazy" really? hmmmm i think that one may be self explanatory. of course sometimes i am lying and i just want you to leave me alone :) just kidding, i think. but for the most part i am really fucking tired. again, toxins rushing through this body. swooshing around in the body. like if you drank a lot of water and you think that you drank too much water and you swear you could hear the water moving inside your tummy (maybe that is just me but lets pretend you feel the same). not only do i not want to puke when i sleep, (positive), i also dont have to think that, crap i feel lazy (see above). one thing that goes through, i think, every person with cancer's brain is that no day can be wasted b/c you never know what tomorrow might bring (i could get hit by a bus!). it feels wasteful to stay on the couch for five days every twenty eight days (my chemo cycle for the next year and a half). but fuck it. bring on the couch.
DO
1) say i look skinny ;)
2) say i look skinny while i am eating a pint of ice cream
3) the opposite of the don'ts
yay! do and don't of dealing with cancer people. well, me.
Monday, April 25, 2011
i dont have internet
I really don't have internet. Even my grandpa has internet. I had a bad experience with atandt during my radiation and chemo cycle and i am scarred. I just decided not to get it. Ever. Its sort of freeing - but it means i cant do anything internet related unless i go to a coffee place or a friends house or my old work.
The reason i am telling you this is that the posts may not be as frequent as i would like. But I will try to mooch off friends more often allowing me to blog :)
so i assume the first post should be how i got to the point of wanting to raise money for brain cancer research for people age 18-40. Can you guess? Oh yes! i have brain cancer and i am 35. yay! i fit my own parameters!
soooo on june 23 2010 i had a stroke and was diagnosed with brain cancer. crazy. i was walking to get sushi at work and i got this intense shooting pain in my head. i went and got my sushi (its so good i coudlnt just abandon it) then went back to the office. it got worse and i ended up on the floor basically screaming in pain.
My co-workers decided i should go to UCLA emergency. so i said, well i guess. so i went. i didnt even get to eat my sushi! i almost left the emergency room because i was waiting for like an hour. my friend who took me to the emergency room said, well maybe we should give it more time. so i did.
i finally got called in and as i was walking to the bed in the hallway (really crowded) i walked right into a garbage can which i didnt see. it was at that point when i realized i lost my peripheral vision on my right side. that was the fucking scariest thing i have experienced in a very long time. not only was it odd it made me realize that, hmmm this might not be a headache.
So i laid on my bed in the hallway and they tried to give me an IV. i have horrible veins and after oh i say about 4 times, they decided to get a pediatrician to do it. nice.
i got an mri or catscan, dont remember. the resident on call came and sat next to me and in a sort of peppy voice told me there was something in the mri that wasnt supposed to be there, a mass of some sort. i was so out of it that it didnt really register. luckily i had friends there to call other people because i could not even really talk.
i was moved to a private room in the ER. i looked like shit and was still disoriented. i remember some neurosurgeon come in and i think he said they want to do some tests but it looks like a tumor and we probably need to take it out. the only question i could think of to ask was if i was going to die that night. he sort of laughed and said he was almost positive that i was not going to die that night. so thats a positive!!!
the rest of that night was sort of a blur. i remember them saying we need to get her to icu. i kept saying, no i dont need to go there, that is for people who are really bad! that wasnt me, i had a fucking headache.
i was moved to icu and this cute little nurse, who told me she was pregnant even though she hadnt told anyone else. i must have been stuck 10 times for a larger IV than a child's one. she could not get it. the other nurse coudlnt get it. what they could do is make my arms look like one giant black and blue mark. not cute. im not sure if i even did get an iv before a central line was put in. i guess it doesnt matter at this point.
so i still didnt think i needed to be in icu. i realized how really serious it was when they wouldnt let me stand up to pee. the nurse said that doctor said you cannot move your head higher than where it is now. they were worried about another stroke. well, i dont remember anyone telling me i had a stroke before this, so that was a nice way to find that out....
more people came and luckily they did, or i would not know anything that happened. I heard a comedian just say that when a doctor says to you that you will feel pressure, it means, this is going to fucking hurt and i dont want to freak you out before hand. well, that is true!
anyway - i dont remember much of what happened next except i was told that the surgeon, when the surgery was over, went out and told my family and friends that i had cancer and i had six months to two years to live. probably not what they were thinking was going to happen.
i remember personally being in the recovery room, wanting nothing more than water, and my aunt, mom, and cousin coming in to tell me and pretty much yelling at me not to listen to the prognosis. not really something that is easy to do.
the rest is a blur. my friend has told me what happened multiple times but i dontyay brain!
so the non-profit idea came to me when during my five days of chemo every 28 days i decided to look up glioblastoma on the internet, even though i have done it before and it always made me depressed. i think it finally clicked in my head that the statistics are based on people over 60 in poor health. the 18-40 age group is completely un-represented with regard to research. i am approaching my year anniversary of being diagnosed and i am freaked out because of the statistics. there is a 1-2% that someone with my cancer lives past 1-2 years. i need a better statistic because i dont want to fall into those shitty statistics. research has to be done. and im going to make it happen :) go me!
just fyi - i dont like apostrophes and i dont like to capitalize things.
The reason i am telling you this is that the posts may not be as frequent as i would like. But I will try to mooch off friends more often allowing me to blog :)
so i assume the first post should be how i got to the point of wanting to raise money for brain cancer research for people age 18-40. Can you guess? Oh yes! i have brain cancer and i am 35. yay! i fit my own parameters!
soooo on june 23 2010 i had a stroke and was diagnosed with brain cancer. crazy. i was walking to get sushi at work and i got this intense shooting pain in my head. i went and got my sushi (its so good i coudlnt just abandon it) then went back to the office. it got worse and i ended up on the floor basically screaming in pain.
My co-workers decided i should go to UCLA emergency. so i said, well i guess. so i went. i didnt even get to eat my sushi! i almost left the emergency room because i was waiting for like an hour. my friend who took me to the emergency room said, well maybe we should give it more time. so i did.
i finally got called in and as i was walking to the bed in the hallway (really crowded) i walked right into a garbage can which i didnt see. it was at that point when i realized i lost my peripheral vision on my right side. that was the fucking scariest thing i have experienced in a very long time. not only was it odd it made me realize that, hmmm this might not be a headache.
So i laid on my bed in the hallway and they tried to give me an IV. i have horrible veins and after oh i say about 4 times, they decided to get a pediatrician to do it. nice.
i got an mri or catscan, dont remember. the resident on call came and sat next to me and in a sort of peppy voice told me there was something in the mri that wasnt supposed to be there, a mass of some sort. i was so out of it that it didnt really register. luckily i had friends there to call other people because i could not even really talk.
i was moved to a private room in the ER. i looked like shit and was still disoriented. i remember some neurosurgeon come in and i think he said they want to do some tests but it looks like a tumor and we probably need to take it out. the only question i could think of to ask was if i was going to die that night. he sort of laughed and said he was almost positive that i was not going to die that night. so thats a positive!!!
the rest of that night was sort of a blur. i remember them saying we need to get her to icu. i kept saying, no i dont need to go there, that is for people who are really bad! that wasnt me, i had a fucking headache.
i was moved to icu and this cute little nurse, who told me she was pregnant even though she hadnt told anyone else. i must have been stuck 10 times for a larger IV than a child's one. she could not get it. the other nurse coudlnt get it. what they could do is make my arms look like one giant black and blue mark. not cute. im not sure if i even did get an iv before a central line was put in. i guess it doesnt matter at this point.
so i still didnt think i needed to be in icu. i realized how really serious it was when they wouldnt let me stand up to pee. the nurse said that doctor said you cannot move your head higher than where it is now. they were worried about another stroke. well, i dont remember anyone telling me i had a stroke before this, so that was a nice way to find that out....
more people came and luckily they did, or i would not know anything that happened. I heard a comedian just say that when a doctor says to you that you will feel pressure, it means, this is going to fucking hurt and i dont want to freak you out before hand. well, that is true!
anyway - i dont remember much of what happened next except i was told that the surgeon, when the surgery was over, went out and told my family and friends that i had cancer and i had six months to two years to live. probably not what they were thinking was going to happen.
i remember personally being in the recovery room, wanting nothing more than water, and my aunt, mom, and cousin coming in to tell me and pretty much yelling at me not to listen to the prognosis. not really something that is easy to do.
the rest is a blur. my friend has told me what happened multiple times but i dontyay brain!
so the non-profit idea came to me when during my five days of chemo every 28 days i decided to look up glioblastoma on the internet, even though i have done it before and it always made me depressed. i think it finally clicked in my head that the statistics are based on people over 60 in poor health. the 18-40 age group is completely un-represented with regard to research. i am approaching my year anniversary of being diagnosed and i am freaked out because of the statistics. there is a 1-2% that someone with my cancer lives past 1-2 years. i need a better statistic because i dont want to fall into those shitty statistics. research has to be done. and im going to make it happen :) go me!
just fyi - i dont like apostrophes and i dont like to capitalize things.
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