Generation "Y (Are You Here?)"

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

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

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

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

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

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

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.