Cancer card – The Ins and Outs

Cancer card – does it ever expire?

I have always heard of a “cancer card”.  Never knew anyone that used it, at least I don’t think.  But guess what,  I AM!!!  Although I have used it, I am not sure if I have used it to its full capacity and I have some questions.

1)      Is it a real card?  I have talked with some friends and we have decided we should design one.  One that can be laminated.  Any graphic designer out there contact me and we can talk. 

2)      Is there an expiration date?  Is it based on the “stage” you are?  How “sexy” your cancer is? (not really sexy sexy but attractive to the public.  For example, I would say brain cancer is less sexy than breast cancer.  The whole world is fighting breast cancer from Susan Komen to Yoplait.  I am not taking anything away from breast cancer patients, but let’s be honest, how many commercials or campaigns have you seen for brain cancer. I rest my case).

3)      Is there anyplace where the cancer card should not be used?  Meaning, will it be declined?  And if it is declined, is it a reason to speak to a manager?

4)      Can you loan the card to someone who is cancer free?  I

So I have answers to all of these questions.  I guess if I didn’t I would be really dumb to ask them in a blog format where no one is there to answer but me….

REAL CARD - I think it should be a real card.  I really do.  I think it is hard for some people to grasp that just because I may look super duper healthy, I have a creaturein my body and many times have toxins running thru my veins that make me nutty.  So I want a card.  I want to be able to say, look, I am happier than a mini shih tzu on parade, but I am still fighting a horrible disease that brings down tougher people that me.  I am not going to change looking fabuolous  J just to prove to someone that I may be tired and want to sleep all day.  So abracadabra – here is my cancer card!  Laminated and everything.  And mine would be pink with sparkles.

EXPIRATION DATE          

I was told by friends that I have a year card then it expires.  I say, phoeey.  I don’t think there should be an expiration date.  On the day that the doc can say to me you are cancer free and will be forever, my cancer card is valid and my “credit” is good.  The reality is for anyone that has anytype of cancer, the thought of never being afraid it is going to come back is non-existent.  It is always   in the back of your mind.  For me, for my type of cancer, the word remission is not ever spoken.  It is never gone.  I believe that it is dormant (knock on wood) but it is always the pink sparkly elephant in the room.  Therefore, my cancer card never expires.  It’s like a black American express card.  At least I think, the world knows I would never get one of those, although wouldn’t that be fun!

WHO TAKES THE CANCER CARD

I can honestly say that I have never pulled the card and it be denied.  (well creditors, but they are evil and have no soul).  I haven’t used it that much.  At least I don’t think I have.  You would have to ask my friends and family, but I think they will say, “oh amie, you should use it more!”.  I can think of three instances where I have used it and it has worked like a charm!

1)      Airlines – I was flying to Spain with a friend and we couldn’t get seats together.  It is a long flight and I am not the most calm flyer.  So I went up to the counter, tried to look sick, cough, and said I was on chemo, had epilepsy and needed to sit next to my friend in case anything happened…. I felt a little guilty, until we got two seats together with no one sitting next to us and extra legroom.  Um hello, cancer rocks!

2)      Disneyland – So I got a pass with a friend.  For Southern Californians it is such a good deal.  You can go almost everyday and its pretty much free!  So there is a way to get a disabled pass.  I have to think it is made for someone in a wheelchair or who has narcolepsy and will fall asleep in line.  But I am impatient and so  we marched our way to City Hall to play the “card”.  I was super nervous, I’m a little anxious as a rule.  I knew they couldn’t really ask what was wrong with me because of HIPPA but as soon as the Disney chick asked me why I spewed my whole life.  She knew about my foot surgery when I was 13, chemo, radiation, broken ankle, hangnail.  She looked at me like I was insane.  I think she gave me the pass to get me out of the area.  But who cares! Front of the line rocks!  Now I get it everytime.  Still get super nervous, once I leave the City Hall, the nervousness is pales in comparison to the stunned faces as a healthy looking boy and girl move to the front of every line, even Peter Pan!

3)      Police – I have only done this once… I swear.  I was driving with a friend to Kansas (don’t ask) and it was 3 in the morning and we were going thru the millionth small town where the speed limit goes from 70 to 30 in a milli-second.  I only slowed to 45 I guess and the cop pulled me over.  Really???? We had been driving for 12 hours and now being pulled over?  So I pulled the card.  I said I was on a road trip because I had just been diagnosed with brain cancer and we were driving longer than I thought and I really wanted to get to our destination.  I had to take my chemo pills….I know, so evil.  BUT – no ticket!  Thank you cancer!

CAN YOU SHARE IT?

Fuck no

So there is my take on the cancer card.  Next time someone you know who has cancer tries to use it, remember what they are going thru and accept it.  It probably is based in some sort of reality and as I always say, who wants to say no to a cancer patient!

J

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

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

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

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!

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

TOP TEN REASONS YOU KNOW YOU HAVE A CHEAP HMO

10. Annual breast exams are conducted at Hooters.

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.

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