Friday, October 7, 2011

bubble burst

so this is a kind of sad post.  not sure how to make this an upbeat and funny.
there was a man who was diagnosed with the same cancer i have.  he was diagnosed after me (in september).  had the initial surgery that i did.  he goes to the same doctors i go to, for the most part.  the doctors never said they got the entire tumor, which they told me, although they cant say for certain.  he had a really bad time with chemo, the same one i am on.  it didnt work for him.  they put him on another chemo and it made him sick in bed for an entire month.  the tumor grew back within a few months.  he had a second surgery.  he was diagnosed in september of 2010 and he died a few days ago.  12 months almost to the date. 

obviously from what i said above, my situation is different for the most part.  however, what is not different is that we have the same cancer.  i live in this bubble that everything is ok and i think the people around me do it which is the right way to be.  the chemo is working for me, the tumor is for the most part gone and i have barely any side effects.  but the truth is that its really not "if" the cancer comes back, its "when".  at least that is what the doctors have said, although they do say they have never seen a smaller tumor and that they did get all of it that they can see.  this should be a huge comfort to me.  i am trying really hard to focus on those differences, but it is IMPOSSIBLE to not see myself in him. 

i guess the point of this is that cancer sucks and while i am positive and doing all that i can (at least i think) you never know.  i still want to live in my bubble, but sometimes it gets holes and pessimism seeps in .  i am lucky that my bubble is mostly made of designer bubble material (nothing but the best :) and of course its pink)

and yes angela - i am going to do the brain cancer nutritionist chick.  thanks for the nagging :) what are you - jewish! heeeheee

Wednesday, October 5, 2011

REGISTER NOW AND A GET A FREE MINI SHIH TZU!!!

Brain Cancer walk is coming up!  You dont really get a free mini shih tzu, cause i only know one and if you try to take him i will have to kill you.  but it made you read this!!!! 

the walk is coming up fast.  i also need to figure out the t-shirt situation so, not to nag, but freakin sign up!!!!  the way to sign up is heroesofhoperace.kintera.org/plasticcastles

it should be fun.  i was thinking we could have a ghetto style picnic on the beach.  byo-everything.  paperbag 40's, wine coolers.  nothing but the best!

i (angela really) is finding out all about the t-shirt thing.  she is all creative and shit, and i am just cute and funny ;)

now on to other stuff

first, here is a picture of my mini shih tzu.  bask in the cuteness of him

there are many things that this stupid cancer has affected in my life.  a few good but mostly bad.  well, that isnt true.  lets say 75% bad and 25% good.  one good thing is that i dont work anymore.  stress is the number one bad thing for people going thru chemo.  your immune system is shit, non existent, kaput.  stress, apparently, is the number one cause of getting sick. well, i sort of made that up, but i do think its up there.  considering every doctor and every therapy type person has told me that i need to avoid stress at all costs.  im not sure how many of you are lawyers, are dating lawyers, have had to use a lawyer or anything lawyer-esque related - but it is ridiculously stressful.  its just too much for someone like me at this point can handle.  not only the stress stuff, but i cant work (bc of chemo) a minimum of 7 days a month.  that isnt including other doctor appointments and blood tests and MRI's.  anyway, point is, i dont work right now.  i seem to always be busy but no lawyer shit.  that is a positive.  i have no money, but i am super duper mucher happier on a daily basis.  some people may think it is irresponsible but i would like those people (and i dont mean anyone at all in particular.  it may even be me projecting on what i think others are thinking) but if you think that, i will gladly share my daily experiences dealing with this stupid cancer shit.  i am sure i can get an extra prescription for chemo..... hopefully none of you will ever have to do this, but if you do, i only hope that you are lucky like me and can take off some time to just get healthy. 

some bad things, which some or obvious - chemo, looming death (happy!) blood tests, mri's, sick feelings, having to tell everyone who does any sort of service on my body the cancer issue - this just happened to me yesterday.  i had to go to the eye doctor and i had to list all the meds and then i got the sad cancer face.  i even have to tell when i get a facial (which is rare these days obviously)  some times i feel like lying but something weird would happen to me, like allergic reaction to some lotion or my eyeball pops out or something.  random shit always happens to me.  anyway, the idea that i can never fill out an initial consult form pretty much anywhere that doesnt have a check cancer box.  which just means everyone knows, which i dont care really, but why does the eye care technician have to know that i have a silly dumb brain? 

the most recent thing that has really been affecting me on a daily basis is this memory problem.  at first i thought it was just chemo brain.  i have posted that it is a real thing, according to many very fancy doctors, but i was starting to feel like it is getting much worse.  seriously, if you tell me a story, repeat it the next day and it will be like a whole new story.  which is why plastic castles is so appropriate! at least i can remember the name.... anyway,  my last MRI showed brain damage.  i dont think i told that many people about this.  it is actual lesions or some doctorly name for grey squirmy looking shit on the mri.  basically, it boils down to the fact that my memory will always be like this.  it may get a little better once chemo is over (i think one more year but who remembers...) but, the doc said it will probably get worse.  she said if it does get worse i can go to a neurotherapist or something who can start me on brain exercises (at least one part of my will be exercising....).  i am not joking - i just had to re-read this paragraph to remember what i had said.  fun!

another good thing - i can spend more time with the mini shih tzu!  and really, how can you put a percentage of happiness on that.  although when he permeates the air which is stinky butthole farts, the percentage goes down.

the basic idea of this post is - sign up for the walk!  it will be fun.  i am not just saying that.  i actually think it will be.  my goal is to not be the last person across the finish line.  but come on, its a brain cancer walk, i am sure there will be the "real" brain cancer people.... for some reason i tend to think i may be faster than the ummm well, more affected, well, now i sound like an ass.  nevermind, im fine with being last....

10 TEN BAD WAYS TO TELL FAMILY YOU HAVE CANCER - THIS IS FROM THE WEBSITE CANCER IS NOT FUNNY

#10: Wear an "I've Got Cancer" t-shirt around the house.

#9:   Using overly intricate (and thoroughly confusing) means:
    
 -Spouse: Honey, you don't look so well. Are you feeling alright?
     -Response: Well, if by 'are' you mean 'do', and if by 'feeling' you mean                
     'have' and if by 'alright' you mean 'cancer', then the answer is yes, I                    
     most certainly do.
#8:   Vanity license plates:  [2MR GUY], [KEMO GAL], [IHAVCNCR],[CNCR FITR]
#7:   Via text message. ( omg! ive gt cancer. not kewl. :( )
#6:   Make your family play connect the dots with some twisted puzzle:
     
"Ya know, I was thinking...the last time we decided to take a 2nd summer        
      vacation was the first time that I told you about how I had cancer...
     crazy, huh?"

#5:   The Relativity Approach:
     
"Well honey, I got fired from my job for sleeping with the cleaning                     
      lady, who apparently gave me HIV. You should get yourself checked                  
      out ASAP. Ha ha, just kidding about that...by the way, I have cancer.
#4:   "Alright everybody, raise your hand if you DON'T have cancer."           
       
(raising your hand at first, then slowly dropping it as everyone watches)
#3:   On the Jumbotron at a sporting event.

#2:   Through clever subtleties:
     
Spouse: Do you have Billy's basketball schedule for next week?
     Response: I'll tell ya what I don't have...the ability to properly regulate            
      cell growth and proliferation anymore.
And the #1 worst way to break cancer diagnosis news to your family:

"Knock-knock" ... "who's there?" ... "I have cancer."


 

one more thing!!!!
go see 50/50.  ill write more about it in a while.  but c it.  now.  this minute.  you are late!

bye

Friday, September 16, 2011

hi

Hi!  For the time being, I am done with traveling (oh wait, a short trip to Colorado, but that doesnt count...)  I am back and ready to go crazy with plastic castles.  with much modification from suggestions from lots of people, the logo is done!  briar did such a kick ass job on it that the world is going to be amazed!  cause the world cares you know.

i am going to move this blog from blogspot to i think word press or something like that.  i couldnt tell you the difference but those in the "know" (briar) said i have to - so i will - everyone has to do what briar says.


everything on the cancer front seems good.  this last round of chemo was a nightmare.  probably the worst one yet - or the worst one i can remember which isnt saying much these days.  i am not really complaining though.  as my friend andrea says "positivity! without it you could be dead!"  :)

as i have said multiple times, and will lots more multiple times - there is a brain cancer walk the sunday of the first weekend in november.  there is a plastic castles team! we are going to make shirts and be the ppeeerrrtttiiieesssttt team out there!  maybe not the fastest, but the cutest! 

im looking to find somewhere that has good prices on making shirts.  it can be a 2 or 3 color design.  if anyone knows of anyplace please let me know!!! 

i have been going to a support group for cancer patients under 40.  i am not what you would call a joiner of group things, BUT, this group is pretty great. even though we all have different cancers, we all share a very similar life experience.  its amazing to be able to say - i literally couldnt get out of bed - and have someone say, me either.  its really validating that it isnt just me having a really hard time on chemo or dealing with the times when you come out of denial-land and remember what is actually happening to you.  again, im not a joiner, but this has been the best joiner experience i have ever had.

once i get this up on its new home i will post it here.  i think, not sure how this works, but briar does ;)

top ten - from planet cancer
TOP TEN REASONS BEING BALD ROCKS!

10. Topless tanning.
9.  No hair in your soup. Or anywhere else, for that matter.
8.  No haircuts, no shampoo, no styling - can you say low-maintenance?
7.  No lice. Ewww.
6.  When on the run from the police, you can hide out in the melon section of the grocery store.
5. Magic Marker skull tattoos.
4.  On really hot nights, a cool satin pillowcase is better than sex. Like you're getting any. UH HUH.... family - look away
3.  Low maintenance = more time on your hands = higher blood counts (Yeah, you know what I mean!)
2.  You can join the Bald Hall of Fame.
1.  Aerodynamics, baby!


#6 is pretty freakin awesome

Monday, July 11, 2011

on a hiatus from travel....but hopefully not for long!

i am back and survived kansas! it was actually really fun. went to the grand canyon and mesa verde national park.  was in kansas for 5 days and wasnt bored!  very relaxing! was in a house that was right on a lake and could sit on a porch and just stare.  staring is one of my favorite things to do.  :)

being at home is not really that fun for me.  have to stay home during chemo so when im not on it, i want to not be there.  just got back from vegas - last minute trip.  super fun! the key to traveling is spending no money.  take a prius, barely any gas.  eat nuts, barely any money and good for you! stay with people you know so you dont have to pay for hotel!  yay!!

im now planning a trip to new york, driving!  want to see mount rushmore and niagra falls.  stop in chicago to see friends, then ummmm harry potter theme park!!!! yay!

things are moving with plastic castles!  im close to doing a logo thanks to briar levit :)  briarmade.com

ive decided to get an evaluation from a nutritionist who deals exclusively with brain cancer.  its a little pricey but it seems like if i dont do it im not doing all that i can to fight this stupid thing.

my goal for this week - work on the logo and finish the paperwork.  being out of town puts a damper on my project.... but being out of town makes me happy.  just need to find a happy medium

OH!  so my friend andrea was looking at the american girl catalog and look what she sent me

it is me a few months ago!  i think they owe me some royalties....

instead of a top ten - enjoy this


bye!

Thursday, June 23, 2011

still in kansas....but ready to celebrate the cancer-versary!

INTERNET MOOCHING CITE - SAGE PRODUCTS, KANSAS

ive already received a bunch of pics (scarily - many dogs and stuffed animals and even a face on a tree).  im really happy today!  one year is over and then only one more year of chemo then i will live forever! well, maybe not forever, that would just be ugly. 
SO send more pics!  its a good way to say, oh, i had to drink on a thursday....

This isnt my favorite top ten since luckily i dont have an HMO, but its still funny

9.  Directions to your doctor's office include, "Take a left when you enter the trailer park."
8.  Tongue depressors taste faintly of Fudgesicles.
7.  The colon specialist is only available on his days off from Roto-Rooter.
6.  Only item listed under Preventive Care coverage is "An apple a day."
5.  The used needle receptacles have recycling symbols on them.
4.  Patient responsible for "200% of out-of-network charges" is not a typo.
3.  Your Prozac comes in different colors with little "m's" on them.
2.  The radiation techs are wearing old Stormtrooper costumes.
1.  The only expense covered 100% is embalming.

Wednesday, June 15, 2011

CANCER-VERSARY!

I'm pretty sure i made the cancer-versary thing up.  but i think it can catch on...

so june 23 is my one year cancer-versary.  i was trying to think of what to do.  i want to celebrate it and each one thereafter.  positivity!  i am going to be in kansas (random i know) so i wont be with all my friends and family.  sooooo - i came up with the idea that whoever wants to celebrate - should have a drink and take a pic and send it to me.  any kind of drink of course, however alcohol is appreciated so i am not the only one...

you can be in the pic or not, you can have your name on the pic or not.  up to you.  tell me what drink you are having too.  i am curious which of my friends are lushes - although i think i have a good idea :)

so there it is, celebrate the cancer-versary with me!  with the statistics as they are, each year is a huge thing to celebrate and who doesnt like a celebration!  its also my half birthday, but well, that doesnt seem as important this year.

yay!

TOP 10 WAYS TO DISRUPT THE WAITING ROOM]

10) ask everyone around you to do things "STAT"
9) offer free prostate exams
8) ask everyone nervously for a spare catheter (just so you know, i do NOT have one)
7) pop a disc in the DVD player of you in an avocado-eating contest
6) supplement blaNd waiting room periodicals with nurse-fetish porn
5) give our best rendition of the dance-floor classic - the naked raptor
4) hold up a sign that reads, "free chemo in the parking lot" (with how much it costs, i may respond to that)
3) initiate a speLLing bee. be unflinchingly cruel with errors (i have no right to criticize others spelling...)
2) leaf through every magazine in the room, shake hands with everyone else, and then say loudly "jesus, this flesh eating scabies itches like a motherfucker"
1) repeatedly refer to the doctor you are waiting for as the "trembling butcher

CARE OF - PLANET CANCER

Thursday, June 2, 2011

Back!

INTERNET MOOCHING SITE - Work

Hi!
I know I have chemo brain (please see below :)  but it isnt so bad that i forgot about this blog!  i was actually out of the country (i am fancy pants)  decided to take a trip to italy and some other places.  i have wanted to go forever and since life is short, i decided to go.  best idea ever!  isnt it true that alcohol kills cancer?..... that is what i lived by during the trip, so shut it if it isnt true! 

although it was fun fun fun, i am happy to be home.  i really didnt think about health stuff while i was there except when i got super tired.  walking miles and miles a day would take its toll on most people, but when you are prone to getting tired from sickiness, it is even more likely.  i went on a cruise (yes the average age was probably 50) i was able to relax and have people wait on me while we were cruising.  it was pretty awesome.  too bad my real life doesnt have someone to clean my condo... those who have seen it can attest to the fact that mary poppins i am not. 

now that i am back, i am full steam ahead with plastic castles.  the huerta clan did the brain cancer walk in the bay area and raised a lot of money for the cause. in true san francisco style, there was a drum circle and other stuff that wonderful.  very different from the LA walk.  we walked along manhattan beach and flea from red hot chili peppers was there.  there were super stylish brain cancer people (my self included of course) and food trucks with snooty food that happened to be yummy.  they gave out coconut water, the new healthy drink that will probably be in the new unhealthy drink when more research is done.  i think the brain cancer walk in LA is in September, but dont quote me on that.  i guess i could look it up but i am still on vacation mood and too lazy :)

the trip was and is bookcased between chemo rounds.  i stopped chemo two days before i had to start the trip and i start chemo now tonight.  it worked out perfectly! nice thing to come back to. although, now i have an excuse to be lazy....   also a chemo plus, i will loose the weight i gained while i ate 24 hours a day on my trip!  yay chemo!!!

one thing that i just figured out is that i have chemo two times in june! and i have an MRI at the end of june.  that stinks because i had one in may! not fair! i know it is the same as it always is, but it seems suckier!  oh well, all i have to keep thinking is chemo equals life. and life equals more vacation!

so, i am hoping to file the necessary paperwork for the plastic castles to become a real life thing.  once that happens the work begins.  i am going to rely on the cancer folk i know because of my brother to help me decipher what the fuck im supposed to do as far as raising money and explaining why raising money is important and what research to try and find when i raise gazillion dollars!  so you know who you are, get ready for me to MOOCH!!

anyway - like i said before in early posts, every post will include a top ten list provided by Planet Cancer.

This one is called WHY TO DATE A CANCER PATIENT

10. I’m a cheap date--probably won't be eating much.
9.  No need to take me to expensive restaurants because, if I do eat, it will probably come right back up.
8.  I can be ready in a jiffy--only have to wash crevices. (EWWW)
7.  Recreational drugs are paid for by insurance.
6.  Commitment-phobic? I'm your dream girl.
5.  Great in the sack. (That one would have made the list either way--but really more so now because I'll often already BE in the sack!) (FAMILY, DONT READ THIS! SOME  THINGS ARE BEST NOT SHARED)
4.  You'll always be the pretty one. BULLSHIT,  :)
3.  Strangers will really think you're special and extra compassionate. ( I LIKE TO SAY, YOU ARE DOING YOUR COMMUNITY SERVICE)
2.  You will get first dibs on all my possessions, and since I'm shopping to cover my fear, you'll come out waaay ahead. (MY TV IS PRETTY MUCH ALL I HAVE AND IT HAS BEEN PROMISED TO SOMEONE.  HOWEVER, MY DEBT IS UP FOR GRABS)
1.  With all my wigs, I'll be a different girl every night.

HEEHEE - i like that one. :)

Tuesday, May 3, 2011

#1 TOP TEN

hi
so i have a few cancer books that i went out and bought immediately after getting out of the hospital.

1) crazy sexy cancer (2 different books with the same name)
2) planet cancer
3) everything changes

they are books that deal with my age group.  they use humor to the extreme which is why i love them!
the planet cancer book has lots of top ten lists and i thought i would share one of them in each post.  since i start chemo this week, i thought the one on chemo brain would be appropriate

TOP 10 WAYS TO DEAL WITH CHEMO BRAIN (TRUE TERM)
10) swear to everyone that you were a blond before you lost your hair (in my case - patches - but still counts!)
9) tell people that your brain "temporarily shuts down during chemo to prevent excessive loss of brain cells"
8) spend the next twenty minutes trying to actually remember and articulate #9
7) when your brain gives out and you stumble over a sentence, look the person directly in the eye and say, "did you catch all that"
6) wait, what was a i talking about? (ONE OF MY PERSONAL FAVORITES)
5) look at your oncologist and say "whoa! you're treating me for what????"
4) proudly announce, "at least it doesnt affect my ability to drive"! (IGNORE THE FACT THAT I HAVE NO PERIPHERAL VISION ON THE RIGHT SIDE)
3) tell everyone it gives you a chance to live in a man's shoes for a change
2) wait, what was  i talking about?
1) when all else fails, pretend you are having flashbacks from 'nam.  even if you weren't born yet

so chemo brain is so real that the mayo clinic has come up with a list for dealing with chemo brain:

    • decrease workload - DONE
    • avoid multiple tasks - CANT SEEM TO GET THIS ONE DOWN
    • prepare today for tomorrow - TRY
    • make lists - I KNOW THIS SOUNDS LIKE A JOKE, BUT I FORGET TO WRITE THINGS ON THE LIST
    • sleep more - DONE
    • use mnemonics and wordplay - REMINDS ME OF STUDYING FOR THE BAR - NOT GOING TO HAPPEN
    • use calendars to record appointments - SEE MAKE LISTS
    • color code and label items - I AM A J - AND I STILL WONT DO THAT
    • track memory problems in small diaries - SEE MAKE LISTS AND USE CALENDARS
    • do crossword puzzles and sudoku - WORDS WITH FRIENDS ROCK

I love that!  it sounds so far-fetched-but it it so freakin true.  very good way of explaining it to someone who hasnt gone through it. 

BRAIN WALK
so apparently we are raising money!  its so fun!  the one in los angeles is, i think, in septemeber.  so since most of you are living in los angeles, i expect your butts to participate.  last year it was right on the beach so even if you hate walking, at least you can see a pretty view!

MRI TIME
so i get MRI every two months.  it sounds like a lot but to be honest, i would get them every month if i could.  seems like, what can grow in a month! so it seems like they would always be good.  unfortunately that doesnt always work
this is the last MRI that i have before my one-year cancerversary (i just made that up!)  it is scary because the stats are so bad that the one year mark is a big mark to survive to.  yay me!
i think that i get lulled into a false sense that everything is always going to be fine.  i had some news that just punches me in the stomach and gets rid of that sense of everything goin to b OK.  there was a guy that a friend knows who got diagnosed with the same cancer in the same month i did.  he is my age and pretty much the only difference is that his tumor was bigger and in a different area in the brain.  he found out at his last MRI that the tumor came back and he had surgery last week.  so there is no security.  they say age is a big factor - but he is my age.  i guess i cant compare myself to him since we are all different.  but of course that is impossible to actually do.
the MRI has to be good because i leave for italy next week and that would suck ass to get bad news before. 

UPDATE ON THE BUS THING BELOW
Angela told me that the comedian Robert Schimmel had cancer and died in a car crash.  so - car crash is OK to say, but still no bus.  no bus.

Saturday, April 30, 2011

Brain cancer walk!

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!

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.

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.