A Cruella Theory

Nayyirah Waheed on the brain

2015-07-20T15:07:00.000-07:00

Oh wander, I could
project

an entire solar system with all the

black holes and nebulas I've conjured for you.
- All the chaos in my heart.

Interoperable

2015-05-13T11:28:00.000-07:00

My love is an external hard drive.

During our last backup, he gave up. said I need more space,
And ran off with all my memories.
I've learned there are creatures in this
universe with
fixed capacities to feel.
They do not respond to maintenance, they do not feature-update. They
cannot play nice with others in the
sandbox. Dimensions set
by their creator that they
never sought to question. What is, what was, what will.
A pity.

My last backup, it said: "this overwhelms me"
"can you send me less information"
"this is too much information"
"I can't process at the required rate"
"I am not equipped"
- blue screen -
We're factory reset now, and I'm setting out into the
world again with faded knowledge and greater scope. I'm looking for a
storage solution that can accept
wide swaths of raw data from indiscriminate sources in any
version of the OS - past, present, future self/ves. I can't tell you data
type I can't tell you workflow I almost
have a grasp on intended usage. Can you clean up these thoughts? Can you
put them into boxes?
Can you map my tangents? Can you set this
aside for later learning? Can you find the patterns? Can you
determine cause? Can you model a future with
room for the past?

Can you backup?

Living: A User Experience

2014-08-29T14:44:00.001-07:00

There is something abrupt about

A lack of loading dots prim-

ing the screen.
You, as the user, don't know if

it will take seconds, minutes,

months
to receive a meaningful
response.
You don't know if things are processing, you
don't know if things have crashed.

You don't know if things are moving forward.

We live our lives through

touchpoints.
The follow up, the interaction, any

snippet of priming that brings the

object or person back to the top of

mind.
To remind you they exist.

We build experiences as seamless yet

we live our lives abrupt.
We pause, we shift, we
jump from one thought to another --
One life stage to the next and we
don't know what to expect,
And we live in this state of

uncomfortable uncertainty and
haven't we solved for that?

Haven't we created
loading dots?

Snapshots

2013-12-31T02:22:00.000-08:00

Last year, I celebrated New Year's Eve in the fetal position.

I could count pain in milligrams of drug sufficient enough to tranquilize a giant, but not enough to alleviate the pain of sitting upright or putting on pants.

My neighbors helped me safely navigate the 50-ft trek between our houses and strip off the leggings unable to accommodate a distended belly and overwhelmed stumps for legs.

In January I bought oversized clothes and met my at-home nurse who thought my 30-pound tumor lump was a baby.

In February I relived the fetal position on the floor of a Port Authority bathroom stall. My best friend came, found me an ambulance, and stayed with me while the morphine dripped over my first encounter with a lymphoma-related bowel obstruction.

In March I did extensive research on the topics of:

"what foods will make me vomit,"

"how to eat: sort of,"

"why won't you stay down, you are liquid, what"

and finally,

"chemo and the case of the tummy tumors: I would laugh but I'm so hungry"

In April I had my first (+ hopefully last) experience with the NG tube, TPN, and "abdominal cut-and-paste." However, I did get to share my hospital bed and apple juice with my best friends and some service puppies.

The morning after I got out of the hospital, I took myself to my first appointment for BMS-936558, now Nivolumab.

In May, newly treated, I went back to Philly as a skeleton in a wig and relearned how to eat.

In June I began the process of reorienting myself as a semi-independent person who eats and walks and talks and commutes every morning.

In July I was living.

In August I was living.

In September I was living.

In October, still living, I had a lung biopsy that resulted in a pause of treatment. Somehow, hearing the drug worked so well it caused inflammation made it OK.

In November, living, I started a big kid job that involves Nerf gun fights and field trips to Medieval Times.

In December I'm alive, well, sunkissed from a trip away from home not involving an IV, blood test, or inpatient stay.

What a year.

Progress

2013-10-20T19:50:00.002-07:00

I decided to geek out a little over the lab results MSKCC handily provides on my patient portal. Here is a little snapshot of my progress over the past year(s). (The numbers from the past three years have a lot of variance, shown below.)

For hemoglobin n00bs, check out wikipedia.

Past 3 years:

Hemoglobin levels from diagnosis (August 2010) - to now (October 2013) Hemoglobin indicates your blood's oxygen-carrying capacity. (Mayo Clinic)

Past year:

My Hemoglobin levels over the past year (Oct 2012-Oct 2013) . 11.5 (g/dl) - 16(g/dl) is "normal", highlighted in red. (g/dl is grams per deciliter)

As you can see, there was a fairly steady drop from Nov 2012-Dec 2012 of last year, when I was "most sick" (comparatively). A non-bleeding ulcer discovery and several units of blood later, I was all shiny (ruddy) and new(ly treated).

You'll notice another big drop from March 2013-April 2013, when I had a major bowel obstruction resulting in an intestinal "cut-and-paste". I was then hospitalized for two weeks, learning how to eat and digest (again).

I began consistently hitting Hemoglobin levels in the "normal" range (highlighted in red) from May 2013 onward and have been vacillating between 12 (g/dl) - 13 (g/dl) since then.

This is a picture of wellness. This is improvement. This is living.

Death, Sex, and You: The Cancer Edition

2013-09-08T20:09:00.005-07:00

"Not Today."

There may be times in life when you find yourself interacting with someone with a scary, perhaps even life-threatening illness. Maybe you meet them at work. In class. At a bar. Making small talk with tact can be difficult amongst all that is icky and emotional. How does one discuss awkward topics like cancer without being awkward? How does one discuss all that is depressing and debilitating?

Some initial tips:

- Don't insinuate fault. Don't mention karma, "life teaches us lessons", or any other potentially blame-laying notions.

- There is a fine line between being light-hearted and being facetious. It is best to assume you are 1. not funny and 2. any inferences you make regarding life expectancy will be wrong and/or insulting. It is also best to refrain from trying to parlay an anticipated life expectancy into a one night stand because "life is short as you know, lolz, yolo".

Or how about we just avoid the topic of death altogether? No dead relatives, no asking about how long I have left, or how I think I would be as a ghost (though I will credit the individual who came up with that particularly precious bit of pillow talk with the most creative take to date on discussions of impending mortality). I know it is super tempting to dive straight into anticipated funeral arrangements when a person you encounter reveals (s)he has been stamped with the "Big C" (or other life-threateningly fun diseases), but how about we all collectively decide to hold back on the er, charm until at least the 3rd date. Or 10th date. Or never.

Re: the dead relative comment. Yes, it can be brought up with a certain level of finesse. Let us assume you, and any of your friends, coworkers, drinking buddies, etc do not have that level of finesse and therefore should avoid mentioning someone who died from the same disease/disease family the person you are speaking with has recently revealed they have. Some of you may find this a bit silly, or unnecessary to address but you would be surprised by how quickly an acquaintance can turn around and say "Hodgkin's Lymphoma? My aunt/grandmother/aging rock star had that. She's dead though..." when you make the mistake of mentioning you are ill.

And on the topic of illness, how does one indicate interest without being intrusive? Follow their lead.

For many of those recently diagnosed, they are completely terrified and haven't the faintest idea what to expect. They may not be the best resource for specific disease-related information, as they are likely overwhelmed by all the new medical jargon they have yet to become fluent in. Ask lightly and let them tell you what they feel like telling you. This is not the time to be pedantic or preachy. If you have suggestions, provide them gently. Everyone has an anecdote about some treatment x or some supplement y that cured z disease. Try prefacing each suggestion with "I'm not sure if you've heard of this, but..." or "I'm not sure this is something you'd be into but..." If you want to share something, make it accessible. Or better, send them the bottle/box/book with the understanding they may never use said product at their doctor's request or simply because they forgot.

Comments on changes in appearance or hair style should be entertained with caution. Really, all opinions except those of the unwaveringly positive or life-affirming sort should be kept to yourself. Chemo (among other treatments and medications) does funky things to all things hair, skin, and body and your sick friend is most likely fully, if not hyper-aware of any/all minute changes their treatment has caused. Whenever you feel compelled to make facial or verbal expressions of disgust towards your friend's deteriorating physical state you can instead choose to not be a completely selfish, emotionally destructive human being and keep it to yourself.

As a friend, it is not your responsibility to enumerate all the ways getting sick can inhibit social, academic, or professional success. Hours of waiting room visits provide plenty of time for sick kids to examine every possible angle, every missed opportunity, every friend who no longer calls, every trip that requires too much energy, every scenario that could end in rejection simply because it has been revealed one has a less-than-stellar immune system. Refrain from asking leading questions such as:

"Who will want you if you're infertile?"

"Why won't you work/exercise/go out/drink?"

"Shouldn't you be married/promoted/back in school by now?"

This may be difficult for the Type A among us to grasp, but you don't get to decide what your friend's limitations are. Or what is an acceptable career, life path, or timeline. Even if it may seem that control over circumstances no longer falls with your sick friend, it most certainly does not fall with you.

But the least welcome comment (in my opinion) is a prediction of failure. Perhaps you feel you the sick friend needs to be "brought back down to earth" with some friendly statistics, risk profiles, or mortality rates. They don't. And they especially don't need it from you, defeatist-masquerading-as-realist, non-medical-expert. Unless you have the spy capacity of the NSA or are a mind reader (in which case I'm impressed), it is safe to say you do not know what your sick friend knows or doesn't know about their treatment or potential quality of life.

"But what if I'm the god of death?"
All you need to know is:
not today.

(How to Grow) In-patient

2013-04-20T04:56:00.002-07:00

"If the biopsy gets moved from Monday, someone is getting punched in the face."
"Well I'll be on my guard then."
He thinks I am kidding. I should be kidding.
I don't think I am kidding anymore.

I think it stems from a loss of patience. I had done well with patience; cultivated it, nurtured it, watered it enough to shelter me during the period of relative statis when I was shoving whatever scraps I could squeeze down my gullet without vomiting, melting down into the weakling with knobby knees that would ultimately suffer one blow too many and end up hospitalized. The tumors had come back. War had been waged and although I had home turf advance they had made the first strike: another bowel obstruction. Worse this time. 3 inch purple incision in my midsection worse. Iv nutrition worse.

But I had been improving. I became ravenous for the minor bits of praise tossed my way by the surgery team -- reminders of the normalcy of a linear progression, rewards for improvement, improvement stemming from following the rules. The sort of things that tend to fall far outside the bounds of oncology. I was doing well they said, each progress report marked with a diet upgrade, a reduction in pain meds, increased mobility, and the promise of a release.

But then they struck again, in the form of tiny lesions on my liver that had not been present the week before. Sort of terrifying, really. I did not think they had it in them. Fevers began, as they always do when shit hits the fan; soul-sucking harbingers of a worsening condition.
As I joked with my oncologist, at least with the surgery I should be able to drink enough to fend off dehydration from the fevers!
The little things, we always say. The little things.

I often feel like a log adrift at sea. Bobbing to and fro, knocked around by the occasional wave, consigned to suffer in the purgatory of watching everyone else powering their own course. I have but the strength to keep head above water: just buoyant enough to keep afloat. I worry for the day I become saturated enough to sink.

Generation "Y (Are You Here?)"

2012-08-22T23:49:00.000-07:00

You can wrap up my idea of happiness and sprinkle it with powdered sugar.

(...and then give my future self diabetes? Candy-coat me, baby.)

It is fortunate my baseline for happiness is the ability to stuff my face with fried dough without the worry I will involuntarily throw it up. I'd like to thank San Sebastiano for having a feast day so perfectly timed, rolling every unhealthy Italian food I could want into my (almost) backyard during this period of able-to-chew-and-swallow. I'd also like to thank my potassium levels again, for their cooperation in getting me temporarily kicked off the trial long enough to be able to sneak away from the house for a few hours without (physical or mental) collapse. This must be what the kids who cut 8th period in high school felt like: some bliss, some adrenaline, slight touch of guilt.

Eating. What a joy! Being able to take large bites, knowing the digestion thing will just sort of "happen"...magic.

Anti-nausea medication -- what a whirl. Big ups to you too, my man.

I'm in a good mood. Mind is a-buzzing. Living it up while I can.

By living it up I mean my day-to-day included the casual blood test, because they forgot to check if I was pregnant during Monday's.

The conversation went a little like this:
Me: Dude. I have one vein left. And it is still bruised from the past 3 blood tests.
Clinical Trial Nurse: LOL, fuck your veins!

During said blood test, the nurse gave my mother the low-down on her 22-year-old daughter who lies around all day and the stampede of 15-year-olds on welfare coming in with children and expensive shoes and all I could think was "Oh god this woman thinks I am some vicious combination of her hack daughter and every pregnant adolescent she's ever encountered." It is at such times I wish I had some sort of membership card, stamp, tattoo that signals to the world that I am not living in my parent's house by choice, omission, lack of job offer. Do they offer these things? And can I get it with the Penn crest? Something that implies "This person accomplishes shit occasionally. Also, she is totally not pregnant." (...as of last week's blood test.)

But le sigh, there was no time for me to "accio" my degree, as indignant nurse was busy going off on the laziness of Gen Y (which she made sure to clarify as "Why are you here?") I was fuming, which happens to look a lot like smiling and nodding.

Sometimes I wonder if this thing is just one big joke.

Drug Vacation

2012-08-21T04:17:00.000-07:00

I've missed my brain.

I know, what a strange thing to miss. Surely it is always present, except during the occasional romantic fling in which it flees? For most yes, but mine had officially "left the building", as they say. I am uncloudy-ish for the first time in weeks. The strange thing is, I'm still on pain killers. Just (temporarily) off the study drug. Who knew how nice a drug vacation could be? Especially when it's potentially life-saving cancer treatment... but I'm happy, I am. I think I needed this. To reminded that I can in fact, compose sentences without drooling (it was getting weird) and stare at words for extended periods and have them make sense to me. So thank you, shoddy potassium levels, for giving me this required break from the clinical trial to pop candy-looking (not candy-tasting, sadly) potassium supplements. Compared to the study drug-oxy-vicodin combo, oxy-vicodin is a walk in the park. Like wow. You don't appreciate what you have until you're given the equivalent of an ACME mallet to the head in the form of a pill. yeesh.

So I suppose I should inform you that yes, I made it into the clinical trial. (that I was then "temporarily" taken off of. See Above.) I went to Ohio alone for 6 days and, with newfound nausea and poor appetite, (what a stellar combination!) force-fed myself whatever it is Midwesterners refer to as "food". Day 1 I attempted the cafeteria, only to discover it was in fact a Wendy's. It was at this point (and many others) I had to ask myself: is this real life?

Dear god, it is.

Anyway, so I go off my coffee/caffeine kick (suck it, doubters!) while in Ohio and developed a taste for apple juice. Yes, I traded in coffee for apple juice.

...I was on drugs, okay?! Sheesh.

I haven't fully recovered from the transition, that is, haven't been having much of any coffee mostly because there's no point in even pretending I'm going to be productive on the toxic combination of study drug-painkiller. I basically spend the days sleeping or counting the hours until I get to sleep. Or watching shitty TV.

Also, I really like juice.

So I really just wanted to get in this tiny bit of writing before study drug starts back up again (potentially later today if EKG goes well) and makes me an actual dope. (Is panobinostat-lenalidomide dope? Meh.) If I can squeeze anything else out before the mallet falls, I'll send out another update.

This is (Probably) Your Brain on Drugs

2012-08-01T23:41:00.000-07:00

The key to becoming a master writer?
Hemingway: Writing drunk and editing sober.

Upon hearing this, the glowing bits in my liver were like:
- HA HA!
- Sucks to suck

...among other things, because I am sure they are sentient beings and can like, talk and stuff.

But I now realize I don't need to drink, because I am in a state of perpetual confusion! Prescription pain killers: the pregame of choice!!! I now get to double up on the fun because my doctors pity me and I admitted to feeling anxious over having to take Vicodin every 4 hours because that is hardly enough time for a good nap or to forget one is about to be in pain. So, now we have a once-every-12-hour "base" of Oxy and the occasional Vicodin.
I have gone from 0 to Real Housewives of Orange County in a matter of days. Truly impressive.

Once upon a time, I could say: All I need in life is Gatorade and Tylenol. Then it became: I run on Gatorade and Vicodin. Now it would be most accurate to say: In my bloodstream one will find Gatorade and (insert any narcotic Prep school boys snort in the locker room). Oh, and pita chips.

Oh lord, I cannot think. I just want to make weird sounds, roll over, and take another nap because really what else am I capable of these days? I must say I have become fantastic at napping, sweating, and "totally not crying" as in "I am totally not crying during 'Prince of Egypt' because of my newfound narcotics-inspired appreciation for music". I don't know why people take painkillers when they're not supposed to because I actually feel crazy. Maybe I am just a "high functioning crazy".
I should not give myself too much credit. We will go with "functioning crazy".

Lately I've been giving myself points for interacting with human brings outside of the house. This requires me to actually leave the house, so... fuck? Is it socially acceptable to walk around in a blanket as Linus so artfully did? I don't want to be a style-biter or worse, bullied by a tyrannical 9-year-old girl with a bad haircut.
These are the things I concern myself with.

Back to the point system -- Doctors and hospital staff aren't supposed to count but today I've decided that they do because my doctor and nurse told me they loved me in two separate instances. I don't know if it was to see if they could get a react out of me, drug zombie, or I am actually in a relationship with my hospital as I've suspected all along. It would make sense, as I've felt guilty "cheating" on hospital with the other hospitals I've been visiting.

If people can fall in love with ostriches and mailboxes, surely I can be in a relationship with my hospital? Let's not even explore the logistics of that as I've already carried this a bit too far for my liking.
Besides, I'm only back at my hospital to do screening tests for a clinical trial I'm ditching it for next week (hopefully). And get more drugzz, obviously.
The screening tests cover a host of things, but they're mostly concerned with how not pregnant I am. Under the clinical trial's exclusions, amidst all the blood, goo, heart, mind specifics that can disqualify a person, for those who still have some shred of a uterus one must be really, really unpregnant. If there are degrees of "not being pregnant", clinical trial patients should be on the "vagina dentate" end of the spectrum.
Me, clueless, is all: So uhmmm, do I just pick up a pregnancy test?
...Because I have long awaited the day my mother and I would go pregnancy test shopping together.
*drinks bleach*
Clinical trial facilitator: Uh, no.
She informed me I had to go to "legitimate testing center" where they send the requesting facility a report indicating if the eggo is in fact, preggo.

Unfortunately, the testing center we went to was run by a woman who, even after being corrected multiple times, was convinced I was born in 1998. So I am a little bit worried about the results getting...anywhere. Or getting a call from child services. Fortunately the other tests are being handled at a facility where the receptionists have proven themselves capable of entering numbers/can read and stuff.

Things are looking up.

Vicodin Consulting

2012-07-22T23:46:00.003-07:00

I write to you in fever and Vicodin haze.

It seems things have taken a turn for the worse since I've last posted, as my mutant inhabitants have rendered me (at times) incapacitated, writhing in pain, calling out for some god, spirit, cereal mascot to intervene. The pharmaceutical gods have smiled on me, however, and now I get Vicodin!!

I have also tapped into the alternative medicine font for pain relief. I am always amazed by the ability of properly placed acupuncture needle to reduce pain; the ability of peppermint oil to cool fever heat. Apparently, acetaminophen can be harmful to the liver in large doses! Which is super, not just because of the whole "my liver is already fucked" thing, but because I will probably be on some form of the drug for at least a month or two as I wait for a clinical trial spot to open up, which happens when they kill off a patient or see a cohort (group of patients) through a full treatment cycle. Of course I was not informed of this by my oncologist, who prescribed the acetaminophen, because he really likes for me to learn things on my own. Or at least that is what I tell myself.

...to convince myself he still possesses some iota of usefulness as I attempt to finagle a treatment plan with the combined efforts of my family and friends.
So anyway, some creativity is needed on the pain relief front.

In order to circumvent the lack of guidance in this whole "finding a clinical trial so my tumors shrink and I do not die" thing, I have transformed myself into a clinical trial consultant. The job, like so many other glamorous consulting gigs, has a large travel component -- involving flying around the country to less-than-desirable locations to conduct industry research and facilitate deals. By "conducting industry research", I mean determining whether any of the information provided before the visit via phone, email, idiot nurse or clinicaltrial.gov posting is at all factual or rooted in reality. By "facilitating deals", I mean pitching my disease profile to oncologists while not-so-subtly begging them to test unproven toxic chemicals on my person. Unlike most top consulting firms, company X ("my body") provides no training or any actual benefits. Though company X's clinical trial team promises to cover all the bases of a proper consulting experience: schmoozing, analysis, long hours, and pretending I can solve complex problems in front of others.

Tomorrow I arrive in the culinary capital of the world: Rochester, Minnesota. Frequent guests of the hotel I'm staying at boast proximity to the very best in Midwestern fine dining. This apparently refers to the Red Lobster and Olive Garden in the neighboring strip mall.

This is of course assuming I even make it to the hotel in question, as I managed to book a flight on what is probably the only airline in history to receive multiple 'zero out of ten' customer reviews. This is all because I insisted on a direct flight, as any less time I can spend not catching pneumonia in a freezing cold cabin with wheezing old men is worthwhile. Side note: fevers are wildly useful if you find yourself in need of a makeshift radiator when dealing with what can only be the airline's best take on an adventure in Antarctica. There is some sweating involved, but I am told sweaty is the new "not sweaty", so ..

---

I meant to update sooner, but waking up around 5:30 every morning to writhe, cry, take drugs, and pray for some medically induced coma to befall me until I get into a clinical trial has a less than positive impact on one's ability to focus. I learn something new every day! If all goes well, you will have another Vicodin-fueled post coming at you soon.

To tide you over, I'll leave you with some highlights of my Ohio trip:

sticky-handed oncologists, naps on stone slabs, and a pizza guy with an affinity for left-handers. yow-za.

Everything You Ever Wanted to Know About Becoming a Cat Lady

2012-07-16T23:24:00.000-07:00

Some stay in New York for a job. Others stay for a significant other.

I stayed in New York for a hospital.

But now we're breaking up. Or at the very least, decided to see other people. Taking a break. We will "stay friends", keep each other posted on comings and goings, and occasionally share bodily fluids.
...in the least sexual way.

As happens in many relationships, we've outgrown each other. Rather, my hospital has nothing compelling to offer me in this stage of my life (/cancer).
So, I'm on the prowl. My hospital has encouraged me to play the field and check out multiple options before settling down. (The relationship analogies will eventually stop.)

(...but not just yet).

I'm flying out tomorrow to meet someone new. As with all first dates, I will gain no useful information. We will exchange basics and backgrounds. Only on a slightly different tune, as I will be regaling them with tales of the failed relationships of my past and every health malady I can scrounge up from recent memory and record. (Note: this is not a dating advice column. Everyone knows such material should be saved for dates 3 and 5!)

Unfortunately, the decision to have a second date is as much theirs as it is mine. As I court this new hospital, he may decide to wait before following up. (hospital will now be referred to as "he" in keeping with the theme.) He may decide that he is "not ready for something serious right now". The timing may not be right. He may be unable to give me what I want. (drugs) He may be unable to satisfy my needs. (drugs) He may do and say all of the right things (read: give me the right drugs), as others have before him, and still come up short.

I share a concern of many women far older than I: the biological clock. Mine is also ticking, but not so much in the reproductive sense as in the productive sense. My ability to function independently is diminished every single day I go without effective treatment, as the tumors colonizing my vital organs grow unfettered. Each symptom of their success is a new warning sign, a new harbinger of doom.

Fever, fatigue, pain, and malfunction may very well be the Four Horsemen.

(Now that I've made you sufficiently depressed...)

Like so many sensing their own draining hourglass, I find myself in a rush to settle down. I find myself anxious to find the right hospital to grow old with. And like so many, I worry I may end up alone.

(Or with a cat or something. I'm not picky.)

Real Housewives

2012-07-08T00:20:00.000-07:00

I don't want to be the well-heeled couple gushing
to another couple
about the many things we have bought and are buying.
The description of a carpet installation. The importance
of a theme-appropriate centerpiece.
Then I think:
I should be so lucky to make it to 40 and have a
normal enough suburban existence to appreciate
the mundane.
Revel in the negligible.
So what is it that I feel when I overhear them? Pity or
envy?
Each stomach spasm makes it harder to tell.

Tales of a Linguistic Anarchist

2012-07-05T00:16:00.000-07:00

Am I a poet?
No.
I just enjoy being cavalier with
grammar and
sentence structure.
This masquerades well
as creativity.
I am fortunate to have found a space that
permits one to
tamper with forms and ideas,
cause literary mischief,
commit linguistic sins with impunity,
say "fuck off" to formality and
"hello"
to balderdash.
(tasty, tasty balderdash.)
These things are important to me,
not being a person who enjoys being told
what to do
how to do it
unless it is to do something particularly cool or
to avoid grave injury.
(hence the utility of mountain-climbing guidebooks)
It is decidedly misguided:
my appreciation for this space and
the freedom it provides,
as it gives false notions of what the world wants and
expects
from the ants that run it.
The supervisors of the ant hills,
the HR departments of the hives --
all with a set of rules and an appreciation
for the order they provide.
To those who say
"fuck order!" or
"fuck the hive!"
they will fine a certain amount this time,
the next requires a formal review,
and after that, well,
good bye!
Subversive use of grammar is hardly
the marker of an anarchist,
but
one would do well to obey.
You never know the list you'll end up on
next time you meet the TSA.

I Could Just Eat You Up

2012-06-29T20:09:00.000-07:00

And she was all like "I want to devour you".
Because if there's one thing boys like,
it's girls with
cannibalistic tendencies.
There ain't no party like a
Donner party
because a Donner party is
BYOB.
-
Would you like some white?

To Suck No More

2012-06-27T17:15:00.000-07:00

I would have called the other day,
written you a letter,
I would have posted on your wall
but then I remembered

...die.

If the world ended tomorrow,
what would you do today?
(not tonight because midnight may very well escape us.)

I think I'd tell you I loved you
then, take it back
then say it again
...then take it back
and then pause.
to let that all sink in
and then

sprint!

(The adrenaline equivalent of an accidental kiss.)

Then stop.
breath
adjust
fall over?

Know that you kiss me at your own risk.
I may forget
or worse!
I may not.
worse yet
I may expect you to do the same
the horror! the pain!
shield your eyes from the rays of the sun,
though your skin remains unscathed.

Oh...

and die.

Love Gives You Lemons

2012-06-20T01:44:00.003-07:00

I am ready to fall in love for the first time
to replace all other first times that were
forced first times,
unsure first times,
first of many times that all seem to be
the same.
A relationship is
letting someone hold a lemon wedge over your
heart’s paper cut and
trusting them not to squeeze, even the tiniest bit,
even by accident,
even when you make them flinch.
It means placing someone in the best possible position
to do the greatest amount of harm
and giving them a revolver.
It means trading in a bulletproof vest for a sign that says
“use me for target practice”
and hoping they never become bored enough
for a little game of Russian Roulette.

Rap of the Lovesick Sick Kid

2012-06-16T22:27:00.000-07:00

Personality Test

Answer the following to the best of your ability:
When left alone in the hospital for several hours, how do you spend the time?
A. Sleeping
B. Watching Maury
C. Learning Klingon
D. Contemplating life and its mysteries
E. Beginning a journey to rap superstardom via Youtube

The title of the post impedes upon the integrity of this exam.

For some perspective, the video involves me in my hospital bed, wearing a hospital gown, and for added fun: with an IV jetting out of my left hand.
It is as terrifying as it sounds.
It required several takes; not for performance value per se, but due to the periodic intercom blaring that added just a tad too much authenticity. Not to mention, nurses get weirded out when they walk in on patients imitating Eminem to their laptops. Apparently such activities are unusual.

The first few lines of this "rap" should erase any and all doubts of how absurd a person I am. (Or illustrate the dangers of mixing delirium with painkillers. The jury is out.)

Oh, damn
I feel woozy
is this a fever or
did you just kiss me?

Then there is a chorus of cliches and references to iron deficiency, Catholicism. I may very well be the next Lil' Wayne.
At the very least, my hair looks passable because the chemo-shedding had not yet kicked in.
(Hair Update: I have successfully managed to get traces of my DNA all over New York. Fingers crossed there isn't an unsolved murder any time soon.)

The periods of bedridden solitude that serve as fertile ground for the utter strangeness that lurks in my mind's corridors are interrupted by visitors: some announced, some checking for evidence of proper kidney function.

Every morning a flock of white coats in masks (There is a dress code to visit me. I am like the Pope.) arrive and stand clustered in silence at the foot of my bed while the most senior among them asks me questions, commands me to breathe. A med student would later inform me interaction with the attending (physician) inspires a certain kind of terror. I am merely annoyed. This white coat mafia is impervious to my usual escape tactic of inciting pity via demonstrations of wellness and boredom like the greatest of magicians. The attending shows his prowess at silencing bratty patients by announcing an order for massage therapy. (This is apparently a thing. And it is awesome.)

A woman comes by asking if I want communion, which I accept on the account that it is non-forced interaction with a human being who does want to talk about my bowel movements. (Standards. I have them.)

Soon after, a friend comes bearing a different kind of gift that in my heathen opinion is far more deserving of a "nectar of the gods" tagline: a Financier raspberry macaron.

A hopelessly bored medical student also finds his way into my room, probably because I am the only sentient being on the premises under 40 and unfamiliar with the hospital caste system. (As a sub-intern he is essentially an Untouchable.) He, of curly hair and Jewish descent, is a comfort amidst the unfamiliarity: it is as if I never left campus! My heart does not palpitate as it had with the male nurse (which is good, because it would have set off an alarm...) but our chat does prompt some of the usual getting-to-know-you anxiety: How would you describe yourself? What do you want to do with your life? How many children do you want? (I kid on the last one but given five more minutes I swear we would have picked out a white-picket fence for our future dog Baxter.) I should mention this conversation involved a mask and fuzzy yellow clothing cover and not at all in the sexual way!
I like my men like my hospital rooms: sterile.

Amidst all these demonstrations of friendship, I was being pumped with fluids via a technique I will unabashedly refer to as "double bagging". Meant to bump up frighteningly low numbers on the blood pressure monitor, it leaves one feeling like an overinflated balloon in a room of needles. (Sausage fingers: it's what's for dinner...dun dun dun) Sausages trying to escape their casings are terrible for typing, which is how I find myself weeks after the fact recalling all of these treasured moments for your amusement.

Until next time.

I Got a Fever (and the Only Prescription is Hot Male Nurses)

2012-06-12T15:02:00.000-07:00

It began as all good stories do: with waves of energy coasting up the body from thigh to neck, gradually flowing back and forth until the change in temperature was palpable. I became light-headed and weak.

I had a 104 fever.

The excitement surrounding this discovery can be boiled down to a few lines:
"Can we bring you in the morning? It's 2am and not a good time to drive."
"...."

Of course, my friends at school are well-versed in the proper protocol for such occasions. They have hailed many a cab with proper snacks at inconvenient times to drag me, sweatpants and all, to get checked out. I once had a first date at the HUP ER and let me tell you, the saline is an excellent aphrodisiac. (Don't let anyone tell you otherwise.)

Anyway, so I was fairly convinced I was going to die. (Not entirely, but I did think to myself "If I die on rt. 3 because my mother insists on driving the speed limit at 2:30am, I will haunt the shit out of these people.")

I was greeted at main campus by a sleeping guard.
disgruntled: "Are you here to see a patient?"
disheveled: "...I am one?"

You're probably wondering what kind of person goes on spontaneous 3am hospital trips.
My best guess? People who should not be allowed in hospitals.
They include: people trying to siphon off morphine. people trying to pull a plug. people unperturbed by a sleeping guard.

I attempt to open the door to the urgent care center only to discover it's been chemo-proofed. Bastards.
The other human gatekeeper "guarding" the door points at the button on the wall: "Enter". Ah yes. That would be it.

With spotty wifi, my sole source of amusement is the unnatural and honestly, unfair level of hotness of the male nurse tending to me. His appreciation of my manicure and book choice confirms my belief that he is the perfect male specimen.
A friend offers practical applications of hot murses: raise a patient's blood pressure, get the blood flowing, other things increasing in inappropriateness.

It is time for the standard chest x-ray, a test used by doctors for the most accurate scapegoating. With each hospital visit I am further convinced this "touch of pneumonia" is just my lung throwing a tantrum. (It never gets what it wants!) I am escorted by a kindly gentleman who I am sure prefers his interaction with 22-year-old girls to not involve wheelchairs. He does get to tell me to breathe though, which I imagine is slightly erotic. Though this is chest x-ray number one thousand I have managed to forget the no bra and jewelry rule. X-ray tech assists with the necklace and all that remains is the question of the bra. I hesitate and decide that yes, I can attempt this sans IV-occupied arm. How hard could it be?
... I sincerely apologize to every guy I ever laughed at.

I would also like to thank Forever 21 for making see-through tshirts that don't appear to be see-through until it is too late. Really spices up those late night chest x-rays.
Working around the IV takes longer than the actual procedure. Also, I have a bra hanging off my arm. Casual. The tech tucks my see-through shirt self into the wheelchair with strategically-covering blanket. I'm sure this guy is thinking "I really don't need this right now." And I'm thinking "How x-rated can we get up in here?"

I return to base and decide the best (read: laziest) course of action is to replace the offending garment with one of those ever-so-titillating hospital gowns. I wonder aloud about asking the hot murse for assistance with said shirt removal. I then remember the public venue and oh, the fact that I am not in an episode of Grey's Anatomy. I ask mom.

It is now 5am. I am awake because ERs are expressly designed to keep patients slightly on edge with periodic beeps, whistles, and scratchy-voiced announcements. I am surprised there isn't a circle of hell modeled after this. Side note: someone should really do a modern take on Inferno.

Another murse approaches and announces I need a second IV. These are not the kind of surprises one appreciates at 5am. He has kind eyes, so I allow him to fiddle around my arms without fidgeting and/or panic attack. He informs me of the blood spurting out of my hand in the same voice one would use to comment on the weather. I decide I like him.

A doctor comes by and throws around words like "sepsis" and "catheter". Realize I may be here for awhile and that they intend to do something terrible with my nether region.
Blood pressure is elevated: success!

-
Check back next time for med student interaction, "rap of the lovesick sick kid", and other bits of amusement.

Bath Salts: A Prescriptive Model

2012-06-11T01:20:00.000-07:00

I have a prescriptive model for the world of the living:
Live.
But what of living passively through the carefully instagrammed photos of another life? The status updates that describe scenarios one only dreams of encountering, feelings one hopes to never know.
Live in a day dream of your own making. One may never know the difference of delusion if one refuses to compare to another reality.
I heard bath salts are excellent in that capacity.
…nibble.

Chasing Hurricanes

2012-06-07T01:21:00.000-07:00

I would call you a rainbow but I
don’t mean to say that you’re beautiful or
out-of-reach or as rare a presence in my
life as a sun shower. Or that I can’t compel you
to appear because some outside force
decides how you come and go,
seemingly for a second. In the window of
my life you should be inconsequential: a
well-appreciated, fleeting
joy but I suppose the ephemerality of
it all has me finding you strangely wonderful.
I cannot chase you past the sun,
I cannot capture you beyond a
photo that convinces me in
times of uncertainty that you once existed.
The summer rain that spills in sun
seems to illustrate the coexistence of
futility and possibility.
I remain afraid
that I am chasing hurricanes
without noticing that the wind at
my back is taking me in circles.
You lace my eyelids when I
stare at the sun, you
soothe the sky’s wounds after it is
cracked open, you are meant
to lead to some greater promise or reward but
I know better.
I would call you a rainbow but your
sentience prevents me from
chalking you up to a perfect storm.
You exist with purpose.

Irrational Fear of Heart Tandem Skydiving

2012-06-06T04:31:00.001-07:00

Years ago,
I decided I required courage.
My imagination runs away with me sometimes,
which is how I end up with these
worst case scenarios: heart hostage crises,
heart kidnappings, heart tandem skydiving accidents.
I have a Groupon for skydiving, yet
I'm still terrified of your opinion of me.
(and your opinion of my opinion of you.)
My self esteem has worked
tirelessly alongside my ego to construct an
appropriate Reading List, so that I may not
stray to the forbidden shelves in the library of
my long term memory as I devise a
best guess of what's on your mind (and
heart).
Real courage implies facing one's fears and
I hide behind a thesaurus.
Holder of parachute,
I cannot face you
and
if I had real courage,
I would face myself.

Continental Drift

2012-05-31T09:35:00.000-07:00

I want to taste the
history on your skin.
Reveal the
entrails that form the parts
of an antique heart.
Childhood shoulder freckles
dot the i's of
everything I've ever sought to
understand.
I would follow the
trace as if Columbus sailed
with the intent of
discovering something
others
had conquered before.
I am unafraid
of untamed lands,
the rockiest of shores
that
mark the exterior of a
continent I have
only dreamed of calling
home.

Survey of the Universe

2012-05-28T15:10:00.000-07:00

Although I fulfilled my natural sciences sector in a different astronomy, I feel as if I've graduated Penn with a "survey of the universe". Only with a focus on the vastness and varieties of human kindness.

Survival is a funny thing. So is natural selection. (It pleases the cancer patient to inform you that an 'Intro to Anthro' course said Darwin was a bit off.) But to me, the most compelling aspect of evolution is altruism. Some scholars say it is unnatural and unrealistic. I cannot think of a better environment for such an notion to thrive than in this hyper-competitive, pre-professional bubble we call home.

Though I'm afraid I must disappoint the Hobbesians and homo economicus* aficionados among you, for it simply does not hold. My proof? Commencement.
Or rather, my presence at it.
(I don't know if you saw, but there is a good 20 seconds of me butchering "The Red and the Blue" on the live stream.)

You see, without altruism there is simply no conceivable way (in hell?) I would have been able to physically don the robe, complete with multicolored hood representing an almost-not-terrible GPA in 36 courses required by my major to graduate. In that robe (amidst the itchy fabric), therein lies about a thousand reminders that I am capable and that help was out there if I asked for it...Plus or minus a few (thousand) extensions, emotional breakdowns in office hours, late night orange-mango juice runs, some serious Penn Nursing skills, dates at the HUP ER, straws for when solid foods were difficult, and hugs for when a life and this present seemed just out of reach.
If you looked hard enough, you would probably find things like "motivational text messages" and "reminders that you don't suck at things". Themes include: the defeat of self-doubt, genuine understanding, a triumph over internal and external bullshittery, "How are you?", you-don't-look-awkward-in-

your-wig-I-swear, I-still-like-you-even-though-you-can't-do-shots-at-Smokes. Distinct memories include: A walk home from class when I couldn't make it myself. The check-in phone call. Cleaning my central venous catheter every 4th day.

We are all incredibly busy people -- our Google calendars can speak to the vast multicolor spreads we subject ourselves to every week. The utility maximizer would simply not waste the time in-between prepping for "Consulting Interview X" and studying for "fuck-this-midterm Y" editing the essay of the girl-whose-chemo-brain-forgot-how-to-spell-deontological. It would be...irrational. (Pardon the misuse of every theory we ever learned, PPE.) That is, unless Penn kids had something else driving them beyond the ambition that sets them apart from (most) other graduates. This is where altruism, or "without any foreseeable benefit to self, I will expend time and effort helping the sick kid" comes in.
Somehow, amidst the ever-present opportunities to strive for greatness, network, kick-everyone-to-the-bottom-of-the-curve, my classmates found themselves (sometimes literally) hand-holding the kid who was sometimes too weak to walk it down to Williams. They willingly took on the additional weight of a physical and emotional burden that would probably require a couple credits and a lab course to fully comprehend. My classmates became purveyors of empathy, deviating from whatever normative behavioral model ivy league kids are meant to exhibit.*** They saved my graduation date and they saved my life.

Our baccalaureate speaker said it best when he spoke of the forgotten gifts: compassion, insight, and attention. It is due to the beyond-equitable division of these invaluable assets that I succeeded at Penn. And it is you, the almost-little-dictators-that-could**, that made it happen.

*PPE203: Behavioral Economics
**Dictator Game, PPE204: Philosophy of Social Science
***General douchebaggery, IVY001

Clinical Trial Diaries

2012-05-26T22:26:00.000-07:00

I arrive hours early to sign off my consent and re-learn what the protocol entails. My official cell guy is out, so I get a Brit with a deep, sexy voice paired with an anorexic-looking nurse. I have him repeat "cytotoxic t lymphocytes" a few times for good measure. The high-cheekboned nurse asks if I've ever gotten an IV before. I resist the urge to attack. She then fumbles around with the one thousand or so multicolored vampire tubes that will soon be filled with whatever blood they can squeeze out of me.

After that we play a little game called "let's find a vein". which involves heat packs, slapping, and just a touch of squirming. After that there is a round of "vein wrestling", which is surely equivalent to alligator wrestling, but with sharper teeth and (slightly) less carnage. (I've been running a bit of a losing streak lately. It seems the 2 years of poking holes in my circulatory system have started to show.) The nurse looks up at me as if the failure is a lack of will. Pushing tears back into their sockets, I have to wonder how four years swimming alongside the best and the brightest failed to prepare me for these moments of inadequacy. I am then left to muse about the practicality of ski resort warning signs on cancer patients. I would gladly walk around with a triple black diamond around my neck if it meant nonexperts would stop swerving all over my scar-ridden terrain.

Then, we pre-med and hydrate. Benadryl in the drip makes me less hostile to the nurse and generally unable to form coherent sentences. My very patient friend Dara arrives and hangs out while I nap-talk. I get "THE CELLS!!" or CTL (see above) and they are fortunately pushed in (doctor talk for "slowly injected") by the sexy Brit and not the green circle skier/vein wrestler. These cells have apparently been frozen and contain preservatives. I wonder if high fructose corn syrup is at all involved, and if they make a lean cuisine version of EBV-targeted cytotoxic t lymphocytes, and if Dara has 4 or 5 of them in her freezer. Like any lean cuisine, the preservatives make me nauseous and I am at the mercy of the green circler to remedy me via the sauciest of Zofrans. I inhale from the remaining sips of my Lemon Tea Snapple, hoping to evade the staleness of the room and constant disinfectant.

After 4 hours of observation and obsessive temperature-taking, I am untethered. My wrist is bandaged sucide-watch style and the orange taint of the disinfectant gives off the impression of carrot jaundice.

Freedom! If only til Monday.