WTFsanjo

small successes

i went topless at the mandalay bay pool.
in front of hundreds of horny drunk people.
and i got hit on.

cancer, chemo, surgery, break-ups, moving, deaths

johns hopkins can now be credited with subjecting me to the most challenging week of my life. 

my greatest insecurity and the only thing i actually covet

i can't believe i just realized this. 

it's fun to be pretty - and on occasion, i am.  it's also fun to eat nachos and wings and beer and popems and jalapaneo poppers, and wake up the next day and drink four cokes with regularity and still be able to pour yourself into a tiny wedding dress, five years later. i can type fast, and i speak well in public, i'm good at small talk: i am particularly good person to have at parties.  my house is sort of clean.  i am honest but not in a bad way.  i am also good at remembering lots of detail.

i want math. 

i dream of chemo

last night i dreamt that dr. man wanted me to do four more rounds of taxol.  this was fine with me, considering my last chemo dream, over a year ago, was about being paid $35,000 to do one more round of AC, which i absolutely could not do.  taxol, though, is easy in comparison, so i had dr. man send me over the bag.  i was at my parents' house, and i knew i had to have breakfast and i figured i would do the taxol at the kitchen table while i ate, but my parents didn't have an IV pole, so i started looking around the house for some way to hold the bag over my head.  i then realized that i had gotten my port out and therefore needed an IV, which my mother offered to do for me.  even in my dreams i know that my mother is not qualified to find a vein with a needle, so i refused her offer and went upstairs to my bedroom.  i looked in my mirror and i was bald and skinny, but it didn't make me feel sad or weird or anything.  it just looked like me. 

always blow dry

any curl in my hair feels like chemo curl in my hands.

my funeral plans

i forgot how great they were:

cashing out my entire 401k and all my savings, renting this 20k a night castle in palm springs that oprah sometimes throws parties at, hiring caterers and bartenders for a three day weekend. on the six month anniversary of my death a select group of 25 people will receive special lithographed invitations in the mail with a mix cd of all my favorite songs. two months later, after reflecting on my death over my mix cd, everyone will converge in palm springs for an insane bacchanalia with tons of liquor and blow and naked people and craziness. everyone will be sad that i'm gone, but party extra hard in my honor. there will be a short ceremony during which some animation by my favorite band, mew, will play on a screen (because when i am dying, i will call mew and they will let me have it because they'll feel sad for me, okay?) and then when the seven minute song is over, everyone will go extra crazy and drink and eat everything in the house. no tears. just wreck the shit out of the castle.

here's to feeling like being dead.  best party ever.

i have absolutely nothing to say

tomorrow i'm getting what will be, perhaps, my gayest haircut ever, and i could not be more excited.

then i will go back to school and sit in an auditorium with hundreds of brilliant 23 year olds, and think - just for that hour - that i understand biostatistics.  i'll walk back down to the subway with my headphones on, making a mental mix tape.  but then i'll be home again, witnessing the mess of journal articles and dead highlighters and empty beer bottles and piles of clean laundry and hop right back on pubmed to search for studies that don't exist so i can start reading them and realize i need to reference like one thousand older studies but they're all from 1957 and dinosaur journals that are only in print.  i don't even have a library card.

yesterday for one second i thought "i'm in love with pubmed."  finding the right paper is like kissing someone you always wanted to kiss.  and this is how i know i probably, sadly, belong here. 

sometimes i forget

how much i hate this motherfucking disease. 

not tonight.

please don't ever forget, amidst the pink ribbons and the stupid avon breast cancer walk commercials and the pink m&m's and the goddamn bumper stickers, that this disease is killing people; ruining lives.

motherless children, partnerless partners, friends with holes in their hearts.

i will never stop hating this.

that one time i turned 30

today i turned 30.

i also hit my head on the wall right when i woke up, almost dropped my ipod into the subway well, and blew a massive snot bubble out of my nose when i couldn't feel my face in the freezing cold outside.  i am out of soap so i didn't wash my feet.  i've been wearing the same tights for three days.  i spent all last weekend furtively using jay's toothbrush.  which is all to say: so far 30 is not a whole hell of a lot different from 29 or 18 or 7.  i am just much much prettier.

a few things about this birthday:

it really is true that you never know how the fuck your life is going to end up.  walking to school today across dirty snow in baltimore to attend a class on managed care and economic evaluation i thought to myself "????"  then i remembered about the cancer, which is basically the reason i was wrapped in wool standing in the freezing wind at 8am on a baltimore street corner, and i wasn't even that angry anymore.  i tried to remember myself bald and sad and i tried to think about seeing my chest for the first time and all i could think was oh.  that was a strange time.  which, to look back on the days of rocking back and forth on the bathroom floor sobbing about wanting to live to see this birthday, made me feel very accomplished. 

the other thing about this birthday, which was also true at 27, a time when i enjoyed afternoons of planning my funeral, is that these 30 years have been quite badass.  soccer practice, first kiss in the long grass at sunset, taking acid at church camp, having crush after crush after crush break my heart, taking apart computers to turn them into coffee tables, living with my best friends in pittsburgh right next door to our other best boy friends who pretended to hate us but then made out with us anyway, moving to LA and drinking miller light in a folding chair with no lamp and watching a 9 inch black and white tv until i fell asleep on an army cot, owning the gaslite with a girl that i loved, crying the whole way up the 5 when i had to leave her, marrying someone who lets me be me and then running up an absurd bar bill, nights at the bear's sitting in wet office furniture watching stabbings and gun deals, a twelve bottle of wine night in manhattan, the shine and sleepwalking and getting cancer and then getting better and fourth of july and palm springs and the steelers and the best part is i could go on. 

the final thing i will say is that i absolutely have the best friends in the universe.  trite?  maybe at first blush, but when i say "best" i don't mean that they are even remotely nice to me.  they are just the best people.  perfect people.  people who will actually wait for the "talking wig" to speak in a circle (except for colin), people who were genius enough to even think of something as retarded as the "talking wig" in the first place, people who send a golfing owl dressed in breast cancer gear to me in the mail, people who deign to BUY a golfing owl, people who get into fights with the floor, people who buy tons of clothes but then still only wear the same bob seger t-shirt every day, people who buy mylar balloons for every occassion, people who use bathrobes as doorstops and have the best parking space parties, people who are fucking genius funny, genius smart, and give me horrible gay porn for my birthday.  people who laughed at my cancer and poured tecate on my mastectomy scars and tried to take shits in huge trashboxes on the beach.  people who know the meaning of F YA.

people who love AMERICA.

tumor found!

my tumor, after what was apparently a whirl-wind trek around the continental united states, has surprisingly re-surfaced in baltimore!  how do i know this?  oh, because johns hopkins sent me an $80 bill for having to touch it.  did they call me to tell me that a critical piece of my medical files had been located, after i had left many a teary message with them?  no, just the bill.  does the bill say why i need to pay $80 for them to accept a fedex package?  no, just "REF LAB/WANG MD, BRANT."  this "wang md brant" better be treating my tumor like family for 80 bucks.

now what i've learned about johns hopkins medicine since i arrived here is that you pretty much do not want to accept any sort of care from them unless you are near certain death and have no other options. "but katie!" you say, "is johns hopkins not one of the premier medical institutions in the world?"  i have no answer to that.  all i can tell you is that for my port to be removed - a procedure that is generally done under light local anesthesia in a surgeon's office and takes about an hour - i was stripped naked, given a pregnancy test, wheeled out on a gurney, x-rayed with no reproductive shield (direct quote: "anybody who wants to save their ovaries get out of the room right now!"  where was i?  laying uncovered on a slab of metal.  apparently the cancer patient's ovaries are not worth saving.), told that nobody at hopkins had "ever seen a port incision like mine before and therefore did not know how to get it out," asked if it would be okay if they gave me "a new incision across my chest?" (answer: no), only mildly IV sedated while six different people tried to pull the port out, which took so long that my local anesthesia wore off and i woke up screaming "STOP!" at which point the nurse asked the anesthesiologist if i was still sedated, and as he said "yes" i screamed "no?"  four and a half hours later, covered in blood and surgical glue, with a massive yellowing bruise across my chest, and what is sure to be a thousand dollar bill for what should have cost about $100 - i was no longer convinced that johns hopkins was a "premier medical institution."

that said, if you are ever involved in any sort of gang warfare in east baltimore and need assistance for a gunshot wound, and you are bleeding so profusely that you cannot possibly travel two miles to mercy or university of maryland, i suppose hopkins is acceptable.

progress

home alone drinking cape codders listening to sad songs on itunes in the dark.

not a tear.

fucking finally.

two down

two years ago today i was diagnosed with cancer. 

the first year is about confronting your own death.  the second year, from what i can tell, is about figuring out how to be alive.  this has proved to be, for me, a significantly bigger struggle than i had anticipated.  which is why, at year two, i have no pearls of wisdom.  the "get through this by whatever means you can" line of advice ceases to apply, as you realize that thrashing your way messily through the foreseeable future is not a viable option.  you have to return to form, find a way to let go of some (not all) of the anger, and stop personalizing every sentence about cancer.  this is the new normal - that elusive post-cancer state that nobody can ever figure out.  it's the transition from collective freak-out to "nobody cares" - your cancer is old news.  shit, it's even old news to me. but passe or not, i still have too much knowledge, know too many dead people, have been poked and prodded and poisoned and cut apart, and now - ultimately - put back together.  sort of like a quilt of skin pieces and thousands of distinct vignettes of human trauma.

a year ago i might have claimed that cancer was the best thing that ever happened to me - the clarity!  the wisdom!  i'm not sure i would go that far today.  it is, however, the most important thing that ever happened to me, and good or bad as it may be, importance has independent merit.

all of that philosophizing aside, i am indebted to the universe for letting me make it to this point.  i also know that there is no reason, cosmic or otherwise, that i have hit this milestone with so little to report.  there are too many people who never make it to their "new normal," and it is those people who have not only taught me everything about dying, but everything about living, too. 

three days left in october equals 72 hours of bitching

this morning the today show (full disclosure: i love the today show) they highlighted an organization called Be Bright Pink that is focused on empowering young women who are at high-risk for breast and ovarian cancer based on BRCA testing or family history.  as you can probably predict, this makes me mad for absolutely no reason.  i guess it's the whole "pre-vivor" thing where very young high-risk women - in the total absence of cancer - live like they already have cancer.  and it's difficult for me not to believe that at least a few of these women sort of want breast cancer - the sympathy, the cachet, the commendation.  so they turn their whole lives into fighting cancer in advance, which i can only imagine feels pretty retarded.  oh, maybe because it is pretty retarded.

you know, i am really trying to be less mad about a lot of things, so when i perused the forums on this website and found women who had undergone prophylactic bilateral mastectomy complaining about their cosmetic outcomes (yeah, no fucking shit) i was sort of like hm, move on.  but just as i was about to navigate away from the website forever, i read something on the front page that made my blood boil:

"Each and every one of the Bright Pink girls are brilliant, bold and beautiful. "

i'm sorry, but what the fuck.  because when i think about the "Be Bright Pink" women's ostensible counterparts, the actual survivors over at YSC, i don't think all the same words apply.  on the whole we are bald (maybe you have an afro, if you're lucky), sick, neutropenic, neuropathied, lymphedemaed, hurt, angry, struggling with clinical depression, fighting PTSD, dealing with destroyed marriages, missing friends, and watching each other die. 

must be nice to "be bright pink."  shit.

jawlee for no reason

you can dress me up

you can not take me out.

what the fuck am i doing in this program?  i can do the work, it's just work.  spend 90% of your free time at a dimly-lit kitchen table playing with numbers and you've got it.  be nice to faculty, make some asinine ass-kissing comment in class once a week, and you're good.  it's really not that fucking hard.  but this "giving a shit" part: i struggle.

i care about what i care about - cancer - and i really do not care about anything else.  i don't care about comparative health systems.  i don't care about sustainable planning.  i don't care about obama's universal health care plan.  i don't care about bisphenol-a.  i literally care about these topics so little that i can't even be manipulated with free food to listen to some asshole talk about them.  in fact, i will literally PAY to not have to listen and eat five-dollar mercury-filled tuna sandwiches by myself.  i must hate public health.  what am i doing here.

i guess the only way i could describe my present experience is that it's like i went back in time to 10th grade and decided to be an entirely different person: played in band, brown-nosed, dreamt of ivies, joined clubs, life-guarded. 

what i actually did in 10th grade: learned how to use thick black eyeliner, smoked cigarettes, ate acid, blew off class, slept a lot, lost my virginity.

liveblogging from the cancer center

what a fucking genius idea to have wireless.  i can't even imagine how much more pleasurable chemo would have been had i not been forced to read 1,000 new yorkers.  i would be less smart now, i guess.  i would know less about the history of the mustard seed or ballanchine choreography.  perhaps i could have done without both of those things had i been able to partake of some lolcats while contemplating suicide from the chemo chair. 

holy shit people are ghetto at hopkins.  a toothless tattooed dude with a wifebeater and super big gulp just accompanied his preteen daughter into the exam room.  she looks like she has some sort of osteosarcoma.  she can't walk.  she's so pretty.  i hate this place.

maybe i'm not sick enough to be here.  maybe i'm NOT SICK AT ALL.  i mean, am i really?  is it worth two hours of dr. wolff's time to entertain my wild environmental toxin fantasies and to help a super well-educated wealthy insured stage 1 semi-white girl prevent some as yet theoretical recurrence? 

the spectrum of pain is so unbelieveable.  this morning people balked at the fact i have a mediport.  "how weird and disgusting and implicit of scary shit" they thought.  now i am here and bald people in wheelchairs hooked up to oxygen are screaming for fentanyl. 

fuck you, ucsf

for losing my tumor.  this is the third time i have had to track my fucking tumor down because of the incompetence of pathology labs at the FINEST oncological institutions in the united states.  did you even put chemo in my bag?  oh, it was simple syrup?  that must be why all my teeth rotted out of my face last year.  thanks.

jeff made a good point today that all the pathology labs that keep "losing" and subsequently "finding" my tumor are probably just pulling random tumors out of the trash can and sending them to me.  this is why my pathology keeps changing.  but then every time the pathology changes i have to send the tumor to another lab who "loses" and "finds" it again and the cycle continues.  ad infinitum. 

in other news: IT'S BREAST CANCER AWARENESS MONTH, EVERYBODY!  did christina applegate and sheryl crow and melissa etheridge and oprah already tell you?  great!  everyone don all the pink shit in the universe and talk about how harrowing it must be to get breast cancer!  and then eat some pink yogurt full of hormones and have some pink cookies that shoot your blood sugar through the roof and then go on a spending spree at bloomingdales with your pink credit card and run up thousands of dollars of high-interest debt! 

can you believe today is only october 1st?  imagine how angry i'll be 30 days from now.  i sort of can't wait.

reason to live, unspecified number

courtney died today

last year she wrote this.

Who am I? Not even I know anymore. I can tell you what I'm not. I’m not a college graduate. I’m not a wife. I’m not a mother. I’m underinsured and under paid. They say I’m not even a patient anymore. I certainly don’t feel like any type of survivor. I’m not bald any longer, wish that I was. Being bald looked better than this mess that is on top of my head now. It was just three years ago that I left home. I’m not a kid, but I’ll admit I’m not an adult. Cancer taught me that. That I can experience menopause twice before I get any over the hill parties, but I haven’t paid enough taxes to receive SSI. Friends?! My peers are graduating college, living the best years of their lives, drinking, partying, discovering wonderful opportunities, with the world at their finger tips. They didn’t have to drop out of college to get chemo. Their boyfriends didn’t leave because he’s afraid they’ll die. Or their friends stopped coming over, calling because cancer is scary and now too close to home. No my peers are fine. My friends, however, are the girls who know what zofran is or more importantly how expensive. Those who were also told they were too young for all of this. But now it is those same doctors who say it’s gone. Congratulations! You can now completely restart your life with no blue print, no manual, and no safety net. I’m nothing, at least on paper. You don’t put 2 years of crying, hair loss, and puking on a resume. They say I should go back to school. To pursue a degree I may never use??? It’s gone!?! For now. But remember 20 year olds don’t get breast cancer. Which must mean 22 year olds don’t get reoccurrences? Yes that’s right I’m still scared. Everyday. Miss big, bad breast cancer survivor cries before every check up and is terrified over headaches. The doctors, therapists can tell women with BC how to explain it to their children, manage their careers, and still be intimate with their husbands. They can’t tell me whether Ill ever have children, recover from cancer well enough financially to have a career, or find time between appointments and hot flashes to meet a man who can deal with either. And further dare not discuss real young adult issues with the physician whom saved your life. A young cancer patient should never be as irresponsible as to deal with substance or alcohol abuse, premarital sex, STD’s, or quality of life vs. meds and tests issues. I am a young breast cancer survivor. I am lost, scared, and not quite ready to face the civilian world I am being forced back into.

like a greeting card from the universe

today i sat next to a mormon missionary on the subway.

his name tag said ELDER BALLS.