Friday, April 30, 2004


multiple sclerosis. this thing isn't even a goddamn tumor. guess i'll have to change my description on this blog. i don't understand at all. i feel like sisyphus or prometheus--damned, only without any grandiose cause. did i bring this on myself? could i have eaten better? exercised more? drunk less?

technically i'm still waiting. of course i'm still waiting. dr. grady said that the neuropathologist wants to do one more stain, and that should take about a week, but both he, the neuropathologist, dr. pruitt, and everyone who has looked at/been consulted with my case is of the opinion that this is MS. dr. grady described it as "that's some good news", but the truth is, i would have rathered it be cancer. cancer is curable. multiple sclerosis is not. with cancer, they could have just gone in my head and removed the problem. with MS, the problem is my own body.

i've been reading a lot, and it's probably all of the wrong literature, about MS and the odd thing is that none of my symptoms are MS symptoms. there has been no weakness or blurred vision or "droopy limbs". only the seizures and near seizures and the blocked vision and the almost intolerable and certainly constant headaches. so what if they're wrong? what if this isn't MS at all? what if this is some freakish yet-to-be-discovered abnormality that will strike me dead before i'm 30? truth be told, lightning or a car could strike me dead before i'm 30.

another thing i've learned through my independent study is a lot of statistics. 85% of MS cases are diagnosed as relapsed-remitting. within 10 years, 50% of those cases become secondary progressive, which means that they get steadily worse. there's no remission--it becomes a matter of managing the disability instead of going back and forth from attack to a-okay. from what i understand, each attack, or relapse, does irreparable damage. so if i'm 27, and within 10 years i'll be 37, let's just say i'm a little pissed off that my life has been kicked in the balls like this.

okay, "a little pissed off" is the understatement of the year. MS won't kill me, and brain cancer could have, but now i have to live the rest of my life waiting for the next relapse to impair me just a little bit more. i'm so angry and full of rage about this that i can't even think of anything appropriate to write. i feel like i'm on some sort of pendulum swinging back and forth between wanting to cry myself dry and wanting to put my fist through the wall.


my grandmother just called. i love her dearly and think she's one of the truest and kindest and most amazing women in the world, and the sound of her voice did well to diffuse the mood i was in a few minutes ago. we cried together in our conversation. i've never really cried with her before. perhaps i've been too busy being "granddaughter" to actually let myself be vulnerable to the one woman in my life who has seen way more than i could possibly throw at her. i feel brokenhearted right now--i could barely speak to her through my tears. and her tears? i just can't handle that.

i think this is all i can write for tonight. i'm a wreck. i should probably get some clarity on this before i try to write any more. there have to be some positives--i just don't see them right now.

Wednesday, April 28, 2004

still waiting...

with headaches all the time.

Sunday, April 25, 2004


right now i am weak and dizzy and tired but not sleepy and a little shaken up. i've had this really awful headache on and off since midday yesterday. when i woke up today i took 3 tylenol extra strength and went to church. during and after the headache was still bad--hurting the most in the front behind my eyes, but sometimes moving around my head. i called dad, who told me to call dr. kearney who suggested that i go into the ER at HUP so they can track what's going on to see if there has been any change. meanwhile, the headache was awful, and i started feeling numb off and on and i thought that a seizure was coming on. i was convinced of it--to the point where i cleared everything off the bed in case i started to convulse. i had stean call dr. grady's answering service and explain what was happening to see if we could get his advice. i guess one of the benefits of being chief of neurosurgery is that you get your weekends off, because the doctor on call called back. but in the time between i started to feel better. before that, though, it was so terrible--i was confused, my thinking was crazy, i felt weak and light all over, i thought i was becoming paralyzed--but i didn't want to go to the hospital because i knew that all they would do was put me on a stretcher and stick an IV in my arm and leave me there forever and then run some tests and leave me there for another forever and then run some more tests and i just hate that whole process. maybe i should have gone in; if it happens again i will go in. the only thing i would stand to gain would be access to a sedative to ease the almost intolerable level of anxiety that i'm feeling.

i'm so afraid. i'm terrified. i don't understand what is happening to me and i don't know what i can do to make it any better. i'm forced to sit here and wait and hope that things don't complicate themselves any further.

cancer. multiple sclerosis. brain tumor. this has been going on for a month now and i have heard a lot of terms thrown at me from a lot of different directions. i don't know what to make of this or where to start putting the pieces together. all i know is that none of this feels real. i keep waiting for it to pass, like a dream or a bad movie. soon i'll wake up or the credits will roll and this will be over and i'll be able to return to life as i knew it.

Friday, April 23, 2004

research study...

the MRI i had done this morning is part of a research study that penn is doing that uses spectroscopy with MRI technology to help diagnose brain abnormalities without having to do surgery (i.e., a biopsy). even though i had already had the biopsy done, there's still some confusion as to what this thing is, so i fell right into the category of patients that meet criteria for this study.

the scan lasted almost an hour--about twice the amount of time for a typical brain MRI. a typical MRI uses a 1.5 tesla magnet, this one uses a 3 tesla magnet (by the way, terms like "spectroscopy" and "tesla" mean absolutely nothing to me). at one point in the scan, the MRI tube SHOOK!!! holy crap. i hate MRIs. i've never been claustrophobic in my life, but being stuck in a tube that is so small that the top is only inches from my eyes is just a little too much for me. just thinking about it makes me anxious--think being buried alive but with an opening at your feet. it's miserable, and quite a challenge to spend an hour trying to distract yourself from thinking about the fact that you're in a little tube with loud knocking and buzzing noises all around you.

anyway, it's over now. i made it through. and hopefully this will be the last of the MRIs for a while. i got my biopsy slides from graduate hospital on thursday and dropped them off to dr. grady's office on friday. i was told that i'd hear from dr. grady "mid-week". so here's to more waiting...

Wednesday, April 21, 2004

more tests, more waiting...

my neurologist is pretty keen on this MS idea. it was her first thought when she looked at my MRI films, and even though my symptoms aren't consistent with those of multiple sclerosis, i think she's leaning towards that as a viable diagnosis. but she, just like the neurosurgeon i saw this morning, says that we need to do more tests, that we don't know enough yet to decide what to do.

multiple sclerosis? holy crap. now i've gone from bad to worse. i go from kill-me-quick deadly tumor to won't-kill-me-but-i'll-wish-it-did lifelong debilitating illness.

i don't know anything yet. i shouldn't get ahead of myself. i do know, though, that the inside of my left elbow, where the phlebotomist took blood today, hurts like god almighty. nothing like having your innards searched with a giant needle until the blood starts flowing.

and i thought 2003 was bad... i shudder to think what 2005 will bring.

second opinion...

new doc, new thoughts, bad news. he says it looks like a grade 3, according to the MRI and the radiology report and the fact that it wasn't there 2 years ago. i'll get some more specific MRI scans done in the next day or so, and he wants my biopsy slides to be reviewed by the penn neuropathologist. his other theory is that it could be multiple sclerosis.

he showed me on the MRI the places where the tumor has infiltrated the healthy tissue. i hate it i hate it i hate it i hate it i don't understand how this is happening and today i feel ready to fall apart and just die from the sheer magnitude of this. what the fuck. what the fuck.

at any rate, the tumor must come out as soon as possible in my opinion.

i'll see the neurologist/neuro-oncologist at 2:00. i was hoping that i wouldn't need her, but it looks like i may after all.

i hate hope. i hate these glimmers of something better that pop up in the haze of really bad news, because everything is so uncertain anyway and i wish i was never told that it could be a lower grade. i wish it had never been suggested to me. i told myself not to believe it could be true until there was more supporting evidence, but i went and did it anyway, and now i feel so fragile and terrified and foolish and deceived.

cancer. you know, in all honesty, i had steeled myself up for it so much last week when i was told i had it, i did a really good job convincing myself that this wouldn't be a big deal and that i would beat it no problem. i was ready and determined and wanted to just get started with it. and then when i was told that maybe it wasn't cancer, this small part of me (this is about as honest as it gets here) was almost disappointed that i wouldn't have the chance to fight that fight. i guess it's as if i were all riled up to go to war, and then i was told that the battle got called off. it's stupid, but there's this transcendency that comes with the title "cancer survivor", like those folks know more than the rest of us could, they've seen the other side or something. i wanted a piece of that. i wanted to see what those folks get to see. there's no challenge in having a benign tumor, just a little bit of a scare. but now that the prospect of cancer is back, holy shit--what was i thinking? i don't want this. i don't know if i can handle this. i'm more frightened than i've ever been of anything ever in my life. i've got to figure out a way to keep things together so that i can fight this.

is this what i get for feeling like the jilted soldier? did i bring this on myself? because now i feel defeated and i haven't even started.

oh my god. someone tell me this isn't real.

Monday, April 19, 2004

gustave courbet, waves...

let me go way back for a minute, to my inspiration to start keeping this weblog. the week i got out of the hospital, my dad came to visit. i don't think anything could have been better than having him here. he went through so much of this with my mother and he's always had the wisdom and perspective that i lack to help me keep things from getting bigger than they need to be.

one of the things we did while he was here was to make use of my VIP tickets for the "manet and the sea" (or as dad called it, in one of his groan-worthy but terrific moments of wit, "old manet and the sea") exhibition at the philadelphia museum of art. dad enjoyed it, but i found the exhibition to be colossally boring. part of it could have been that i was feeling miserable and depressed and overwhelmed and exhausted on the day we went to see it, but i've spent a lot of time in that art museum and i can say objectively that this was not one of their better shows. besides, old manet's paintings were only about 30% of the works on display. the others were done by his contemporaries or by folks who some curator decided inspired his seascapes somewhere along the way.

we got the audio tour headsets so we could migrate ever-so-slowly with the masses of people who also got the audio tour. i didn't use mine. it was nice and quiet in there with everyone else listening to their headphones. i'm not one for impressionism and i lose patience quickly with crowds. and this situation was exacerbated by my inability to see to my right (have i even mentioned this yet? the tumor is has limited my sight so i have no peripheral vision to my right. instead of having a normal field of vision, i'd say i'm probably at about 80%. from what i can tell, this is not likely to change any time soon). major exhibitions at major art museums are so clumsy. the works are laid out with a path in mind, generally chronological, but you end up bottlenecking with the same folks listening to the same audio tour spiel and you never really get any peace.

so i wandered around, checked out the paintings with the smallest crowds, took advantage of the spaces where they became available. and i found myself face to face with a painting that brought me to tears...

"waves" by gustave courbet, 1869. i will freely admit that i don't understand visual composition or the balance of color or chiaroscuro or pointillism et cetera, but this painting filled me with a sadness that was so familiar to the sadness i was already feeling. the image is simple--giant waves crashing on a sandy beach, empty except for a small deserted boat. you can see other boats way off in the distance. but what got me was the sky--it was blue at the top of the canvas, but as it fell to meet the sea, the clouds congested and darkened, making this mess of sea and weather and blue and grey right in the middle of the image that made me want to dive right into it.

it was like the beginning of _the voyage of the dawn treader_, the painting in lucy's room. it struck me and i must have stood in front of it for 15 minutes. it was so beautiful and i felt so small and so...

i walked around a bit more in the exhibition, but i kept coming back to the courbet. so many thoughts were in my head and i realized that things are going to happen to me in this whole brain tumor process, i'm going to feel things and see things and do things, and it's probably a good idea to start writing those things down. i said in an e-mail to valerie sayers last night that i want this experience to change my life. i don't really know how one goes about changing one's life, but i would think it is something that happens one step at a time, and probably pretty undramatically for the most part.

so that's that. emily's brilliant how-i-survived-brain-cancer weblog, inspired by a silly painting. though, it seems that it's always the small things that move the most mountains. we'll see how this goes.

google's pawn...

i was just about to close my blog, left open in another window, and i noticed two listings in the ad bar at the top of the page... one was for an epilepsy study and the other was for an anti-seizure medication. i must be hallucinating, right? how could the internet have infiltrated the sanctity of my home? so i clicked on the refresh button... an ad for gamma knife radiation therapy, with "related searches: brain cancer". damn.

i'm so naive.

Friday, April 16, 2004

anaplastic astrocytoma...

diagnosis? grade three, malignant tumor. standard therapy includes surgery and radiation, followed by chemotherapy. there will be regular MRIs and regular check-ups. i am now a cancer patient.

lots of weird things about this. first of all, the chemo could last one and possibly two years. dr. neff says that chemotherapy for brain tumors typically isn't so strong that one loses one's hair and gets really sick. but still... chemo... i keep thinking of myself looking like gollum--green with a really bad combover...

the really awful, heartbreaking risk with this is that because of where the tumor is, i could lose my ability to read. not to see or speak or spell or write or comprehend, but my ability to see letters and translate those letters into the concepts they represent. i wouldn't be able to read! it's not just about books, it's about menus at restaurants and price tags at stores and news headlines and whose number is on the caller ID and subtitles on foreign movies and using the internet and reading a map and absolutely everything about going to law school!

and almost as heartbreaking, a very close second, is that it is dr. neff's very strong recommendation that i postpone law school for a year so that my treatment doesn't interfere. it only makes sense, if i can't read and all. but i told him i wasn't willing yet to commit to that decision. he said he'll support me whatever i decide to do.

stean and i spent over an hour and a half with dr. neff, going over what to expect and how things would work and who i should talk to and what all of this meant. i was glad i had the prior warning so that this didn't come as such a shock. i honestly felt (and still feel) okay about it. cancer. no big thing. this is just one of the many many obstacles that life will give me to overcome. true, this one will be a little more difficult than others, but it's nothing i can't handle.

but... here's the weird part: as stean and i were leaving, headed back to work, my cell phone rang. it was dr. neff, calling to tell me that while we were meeting, the pathologist had called to say that his diagnosis of the anaplastic astrocytoma was not conclusive and he believed my tumor to be of a lower grade.

huh? so now it's grade two, benign brain tumor? and that radiation and chemo stuff is irrelevant?

so, dr. neff was going to take the slides to a different lab to get a second opinion.

good grief.

Thursday, April 15, 2004

grade 3...

tomorrow. finally tomorrow i'll get the pathology results. in less than 24 hours i will know and i can start moving forward.

i talked to dr. neff today, who went to the lab himself to find out what was taking so long, and he told me a lot of stuff about cell growth and stains and blah blah blah, and then he said, "we'll know for sure when the report is finished, but it looks to me like we're dealing with something a little worse than i had first thought, but not as bad as it could be." and of course i wanted to know what that meant. so here goes... as i understand it, tumors are categorized as grades, ranging from 1 (very benign) to 4 (very malignant). originally, he had thought that this was a 1 or a 2. after these tests, it looks like a 3.

i had an appointment with my primary care doc today that i had made a while ago, before all of this happened, to see if (of all things) she could prescribe me some acne meds so i can clear up my skin before schoss's wedding in july. ah, vanity. so i went, with a much different agenda than when i set up the appointment, and i told her all of this, and she said to me, "that's cancer. you know that, right?" and i said (crying, of course, because i seem to burst into tears all the time now), "yep."

but then she said, "well, we have to get it out." not, "oh you're going to die", but "we have to get it out", as if it's a bad houseguest who is drinking all of the beer. so maybe it's not so bad. i mean, it's bad, obviously--i have brain cancer. but maybe i'll survive it. i mean, obviously i'll survive it. but maybe this won't be as bad as i fear. she thinks that what dr. neff will suggest will be surgery to remove as much as can be removed, then radiation and possibly some chemotherapy. i say bring it on--let's get this bastard out of my body before it invites its friends.

now, before anybody gets fooled into thinking i'm being really strong despite just having gotten a preliminary cancer diagnosis, let me just say that i freaked out earlier today. and i cried in my doctor's office. and tomorrow, when i hear all of this in it's actuality, i will probably cry again, and then freak out. but now i'm in a good moment. it's a beautiful day, i just took the dog out for a walk, she got peed on by a great dane in the dog park. things could be worse--at least i wasn't peed on.

(i mean, sure, i could tell you how the whole time today during the baby shower we had at work for one of my co-workers i was thinking about how maybe i'll never know what it feels like to be pregnant or to have a kid to ground for doing something stupid, but you've read enough of that in earlier entries and it's all terribly boring anyway.)

things will get worse. and they'll get better. and then they'll get worse again. and then they'll get better. my goal is to make sure they spend more time on the better end than on the worse. and that ultimately they end on the better.

the big C. right behind heart disease for the biggest killer. well, screw you, big C. you picked the wrong brain (quite possibly the worst pun ever made) in which to crash.

one more thing (and i hope i don't die and suddenly these blog postings become something that gets distributed to my family at the funeral), i went to confession this afternoon. i went because more than anything, i'm looking for some courage and some peace of mind and somewhere to draw some strength. so i fell back on the most basic of my catholic grade school tenets--need help? talk to a priest!

well, as i should have predicted, it didn't exactly turn into the soul-cleansing moment of clarity i hoped it would be. despite my attempts to explain to the priest, who was a very kind man and very well-versed in the chatechism, that i didn't know what to do with my fears and my weakness at a time in my life in which i wanted faith and strength, he went through the 10 commandments to make sure we covered all of my sins.

sigh... what was i thinking? it was the sacrament of reconcilliation! at least now i can go forward with a clear conscience, except that i don't really feel repentant for having "fornicated". he told me as my penance to read psalm 86. i haven't done it yet. could it be that my solace and strength could be in that psalm? i won't put that expectation on it, but i'll try to be open to whatever it has to tell me.

and, despite the 8 to 10 years that have passed since i've gone to confession, i still managed to recite the act of contrition verbatim. damn right. see that brain tumor? you ain't got shit (oh well, there goes that clearing of conscience for the swear words).

tomorrow and tomorrow and tomorrow...

Wednesday, April 14, 2004

nineteen days...

in my PDA i keep cutting-and-pasting "dr. neff appt." from one day to the next. everytime i call to verify that they have gotten the pathology results from my biopsy, they either tell me that the pathologist needs a few more days or that he's out of the office or something else that sounds totally made up to me. it has been nineteen days since the biopsy. i've gone from contentedly waiting to increasingly paranoid. in my mind (i hate that all equivalent phrases--in my head, my thoughts, whatever--now carry this stupid irony) this thing has fingers like the tree in _poltergeist_ and is rapidly taking over all facets of neurological function. soon, i'll be a vegetable and i'm sure to be incontinent.

[the dog just plopped herself down on stean's dirty laundry--i'm glad he's not here to see this]

carrie, one of our MCAT teachers, stopped by the office yesterday and talked to me for a while. she said that there are many many different types of brain tumors, and if the pathology doesn't get it right, the treatment for some type of tumor that i don't have could kill me. this makes me feel only slightly better. did i mention it's been 19 days? another fun fact: it's been 22 days since my seizures. 19/22nds = way too long.

a brain tumor? i mean, a fucking brain tumor??? i read (i have to stop reading things about this) that only 16,000 people get diagnosed with a brain tumor per year! 16,000? that's not even enough people to get enraged about! it's like a minor human rights violation, the kind that gets overlooked for the bigger ones that impact more people, the somalian refugees, the apartheids, the breast cancers, the heart diseases. jesus. who the hell gets a brain tumor?

nothing feels normal anymore. nothing. not even sleeping. not even taking a shower or going to the bathroom or watching a movie. i always feel like i'm on medication and i constantly think about it. i might die from this. i'm 27, hardly an adult. there are things i want to do. like this stuff:

graduate from law school
love my career
marry stean
be a good mother
run a marathon
grow my own garden
play the piano

see? these aren't extravagant or unrealistic. i just want to be given the chance to get old. i've never wanted to get old more in my life.

i'm seriously so angry and afraid and confused over all this stuff and i know that having the answers that these tests will provide is not necessarily going to make anything better, but at least it would feel like progress. maybe i died in the biopsy and this is my hell--i'm damned to sit around and wait for results that will never come and just feel terrified and uncertain.

deep breath. okay, some positive things. even if i have to force myself to think of them.

i've been going to church. i don't know what it does or what i believe within its context, but as a friend said, when i ran into him after easter sunday mass, "it just makes you feel better." i cried so much during good friday services. i don't know what came over me--i just felt so overwhelmed. i didn't blubber or anything, but there was a pretty steady stream of tears.

i'm getting more comfortable with the idea of losing my hair. and i think i've decided that i'm not going to be one of those everyday wig-wearers. that's just silly. unless i have a giant scar, but i shouldn't get too ahead of myself.

i paid all of my bills a little ahead of where i thought i'd be this month. always positive.

Wednesday, April 07, 2004

the spotless mind...

due to my inexplicable fascination with elijah wood (by the way, newest celebrity crush? mark ruffalo--brain tumor survivor), i've been wanting to see _eternal sunshine of the spotless mind_ for months now, regularly checking it's listing for release date information and reviews (although i couldn't care less for the charlie kaufman hype). tonight we went to see it, stean and i and our friend jenn. we sat about 2/3rds of the way back in a relatively empty theater. i got a headache pretty early on, par for the course with these anti-seizure meds. but then about 40 minutes in, the aura started. it happened during a sequence in the movie in which the music had a lot of squeaky stringy instrument sounds, combined with a lot of flashing edit cuts and the screen seemed to get really big and imposing. i covered my eyes, hoping that whatever was being triggered would be evaded, and i reached for the carbamazepine, thinking that if i could get some drugs in my system it could keep things from getting to seizure point. (i kept thinking about all those stories about kids seizing because of the flashing lights in video games.) there was no seizure, thankfully. between the meds and the eye covering and the getting up and leaving the theater, things settled down. i did feel confused and upset for a while, but that subsided, too.

the pre-seizure. it's the strangest feeling, the most difficult-to-articulate feeling. i tried to describe it to stean (my hero, who paid for our movie tickets and who left with me without the slightest complaint even though for once he was actually enjoying a movie i wanted to see), and i can think of only one thing that comes close, something from my younger, more foolish days, back when i thought i was invincible, a feeling that has been completely eradicated from my understanding of life in the past few weeks--it's like a bad drug experience. everything feels immediate and crippling, as if you can feel yourself sliding away, but you're powerless to stop it. it ain't fun.

we walked home. i cried a lot. the randomness of disease leaves me reeling. i grew this thing--this tumor happened in me. call it a mutation or a fluke or just plain bad luck, but its cells are derived from my cells. how unfair... my entire life i've been this nerdy smart kid. gifted classes in grade school, skipped 5th grade because of high IQ, good at standardized tests, hell-bent college bound as a teenager, have toyed with the idea of joining mensa. i feel as if my greatest attribute, the part of me of which i have always been most proud, is now betraying me.


when my father was here last week, at a moment when i was at the computer, i scrolled through the music on my computer to play some songs. one of my selections was "suzanne" by leonard cohen. my father told me, "i wanted to name you suzanne, you know."


somewhere in a parallel universe i am so much cooler because i am named after a leonard cohen song.

on the way to work...

i just ran into a girl i used to work with when i was doing part-time telemarketing at the art museum. it was so nice to see her, she's such a cool girl. i didn't say anything to her about the tumor. why should i? it's good to have people not know. god i hate this. this is so strange and convoluted and abstruse. do i tell everyone? does my life need that level of exposure? and how do i deal with it with the people who do know? i want to talk about it all the time. it's all i think about right now. i took the dog for a walk on monday after work and we went to the dog park and while i was watching her run around, i had this moment of realization that i had forgotten about the tumor. but of course, that moment of realization brought the thoughts back. it's like one of those really distracting high school crushes that you wish you could stop thinking about, but it's always there. always on your mind, if you will. in all truthfulness, thinking about it is all i want to do. i know that this is going to teach me something and that it can change my life forever. what i will learn and how those changes will manifest is yet to be revealed.

it's been 15 days since the seizures. 15 days isn't a lot of time. it feels like an eternity. so much has happened. so much will happen yet.

going back to an earlier thought, i want to talk about this all the time. it is the single most important thing in my life right now. however, it is not the single most important thing for anyone else. not even my dad, not even stean. this is my brain, and my brain's little guest, and it's up to me to situate my need to talk about it within the larger context of life's goings-on. it's unfair for me to talk about it with people all the time. it is the kind of thing that makes people uncomfortable because there are no answers, no correct responses. i remember so well how things happened when mom died. the first week or two, people were so kind and thoughtful and they asked how everything was going. but after that, they moved on with their stuff. it's completely natural--i'm guilty of it myself when the situation has been a friend's. but unfortunately, things don't get better so quickly for the one who is grieving. this totally feels like grief--it has the same patterns of ups and downs, there are moments when i want the coldness of this situation to embrace me and there are moments when i just want it to sit next to me and be quiet. but i can't get rid of it.

last night on my way home from ceramics i got really sad. in class everyone's pretty quiet, working on their pieces. the past 15 days have been uncharacteristically social in that people have been around, have wanted to know updates. but for three hours last night i was back in an element that didn't include this tumor. and, of course, i thought about it the entire three hours. and as i was walking home i felt lonely and sad and i wanted to talk to someone. so i scrolled through the numbers on my cell phone and the only one i felt that it would be okay to call was my brother. of all the friends i have, all the people who have encouraged me to call any time if i needed to talk, the only person i felt i could bother with it was my brother, who was at work and couldn't really talk. i've never really been good at leaning on people. i guess that might be one of the lessons this will teach me, too.

Tuesday, April 06, 2004


i had planned to finish telling the story about the hospital and all of that funness, but i'll get to that someday perhaps.

here's the thing. i know this is only 2 weeks old, i know that it takes time to accept and adjust and all of that crap, but i'm sick of this already. on my way to ceramics class tonight i got lost. I GOT FUCKING LOST! i've been taking classes at this place for well over a year and i totally blanked on the address! i hate being on this anti-seizure medication. i hate it so much. it makes me forget things. it makes me dizzy. it makes my brain slow. forgive me for not seeing the tradeoff.

what if this is how it is now? i'm starting law school in the fall. in less than five months i'll be realizing the goal i've had for years. and i'm sitting here waiting for the goddamn pathology results on a biopsy that was done a week and a half ago and i'm slowly becoming a complete moron just so i don't have another seizure.

i'd rather run the risk. i'd take the seizures over being stupid.

i don't want this to be happening. not to me. not at all.

Sunday, April 04, 2004

the hospital...

i spent tuesday evening through midday saturday in the hospital. until my biopsy on friday, i was in room 461, in the telemetry ward, which is like the middle ground between your regular run-of-the-mill hospital room and intensive care. the primary difference is that in the telemetry ward, you're hooked up to a heart monitor all the time and a nurse comes in every 4 hours to check your vital signs. during the first few hours i was there on tuesday, i wasn't allowed out of bed at all, so i had to use a bed pan to go to the bathroom. few things are less graceful than urinating in what looks like a shallow, plastic, upside-down cowboy hat while you're mostly horizontal in a bed and connected via wires and 5 electrode pads to a heart monitor.

every 8 hours i took my dilantin, 100 mg, in time-release pill form. i was given IV fluids to keep me hydrated and, although i had no restrictions on my diet, i was fed the blandest, most visually uninteresting food ever served. the truth was that i didn't have much of an appetite anyway, so it was probably for the best that they brought me food that i didn't care for.

on wednesday, when it started to be obvious that i wasn't going to be able to go home for another day or so, i began the process of letting people know. my father already knew, and had passed along news to family. stean knew, and had told a couple of our closest friends. i sat there in a hospital room in the middle of the day wondering who do i tell and how do i tell them. i didn't really call many people at first. i was in and out of the room all day having tests done. first a CT scan of my head, then an MRI. and finally an EEG.

and then they told me... there was something in my brain. i saw the MRI film--it was undeniably there--a smallish white thing in my left occipital lobe. what it was they couldn't say just yet--it could have been an abscess, or maybe a cyst, and of course, there was the possibility that it was a tumor. highly unlikely, they told me. most probably an abscess, and they could drain it easily enough, prescribe me some antibiotics, and send me on my way. but first, more tests...

so thursday i had CT scans of my abdomen and pelvis, and a test whose name i forget but that involved my remaining totally still for 42 minutes while a giant metal disc rotated slowly around my head. holy hospital bills, batman, i thank god that this didn't happen six weeks earlier, before my health insurance benefits kicked in with my new job.

and the questioning. constant questioning. most of the time the same questions... did you soil yourself during the seizure? have you been out of the country recently? do you have any prior history of seizures? do you abuse drugs or alcohol? have you hit your head recently? the answer to all of the questions was no. this all came completely out of the blue.

i was able to tell more people, and asked them to make some calls. friends came to hang out in the evening. i called my friend jessie. our phone conversation went like this:
emily: hey, um, so, i had a couple of seizures and i'm in the hospital now. there's something in my brain.
jessie: what? which hospital?
emily: graduate
jessie: i'll be there this afternoon.
and she was--took the train down from new york and stayed for two nights. took care of the dog and cats at night while stean stayed in the hospital with me.

i was scheduled for a biopsy for midday on friday. brain surgery. they'd put some sort of metal halo on my head and use a CT scan to set the exact coordinates for the drill to put a small hole in my skull, into which a small blunt needle would be inserted that would push the healthy brain tissue aside and puncture the unwelcome mass. then they would extract cells from the mass--if they got liquid, it's a relatively easy fix and everybody's happy. if they don't, then we start to have more serious conversations. early that morning i had the last of my tests done, a CT scan of my chest, which, like the scan of my abdomen and pelvis, was totally free of disease. this was a good sign, because it meant that there was no cancer elsewhere in my body that could have metastasized into my brain. i was hopeful that i'd get out of this experience with nothing worse than a small bald patch as a souvenir of the biopsy.

when the time came for the biopsy, my neurosurgeon (my neurosurgeon?!) asked me who i wanted him talk to after the procedure. i appointed stean and jessie and our friend joe. they rolled me into the operating room and i met the anesthesiologist and everyone who would be involved in the procedure, then they put me to sleep. i woke up with the halo on my head, en route to CT scan again. i remember the whole episode--i couldn't move at all because of my giant metal headgear. i had the scan, they took me back to the OR, i had just enough time to start getting nervous about the procedure before the anesthesiologist did his magic and i was out.

when i woke up, the halo was gone, my head felt dull and throbbed slightly, all was blurry (i didn't have my glasses with me), and one of the residents was there saying, "emily? everything went well, but it wasn't an abscess--we didn't get fluid."

the beginning, the seizures...

last tuesday, i was in a cab on my way to a lunch meeting with my boss and two of my coworkers. we had to make a detour so my boss could pick something up and i started to feel really dizzy. i thought it was motion sickness, so while my boss was running her errand, i got out of the cab to get some fresh air. we had stopped on a small hill, and i kept losing my footing and stumbling a bit. i had gotten motion sickness enough times to know that this was unusual. my boss came back, and thinking that the feeling would pass, i got back in the cab. we made it about 4 blocks up the road and i was feeling increasingly nauseous and light-headed, so i asked the cab driver to let me out and i told my co-workers that i would just walk the rest of the way (it was about a 20 block walk to our destination, but all i could think at that point was that i wanted out of the car) and meet them there. i got out, feeling incredibly out of it and dizzy, and called stean, just because i felt so awful and needed to tell someone. i probably spent a minute or two on the phone with him and then the right side of my body started to twitch so i hung up. my co-workers had gotten out of the cab and had come back to check on me. i got really nervous--my right leg, arm, and eye were all twitching like mad and my peripheral vision on my right side started to tunnel and flash, as if someone were holding a strobe light directly at the side of my head. my head was spinning, everyone was asking me if i was okay, if i was hungry, if i wanted to sit down, if i wanted to go to the hospital (coincidentally enough, we were a block away from a hospital). someone ran off to get me something to eat. i sat down on the ground and held on tenaciously to a fence to try and steady myself. and that's the last thing i remember.

i regained consciousness in the emergency room wearing a hospital gown, with a plastic hospital id bracelet on my wrist, an IV in my arm, and electrodes on my chest. i have never in my life felt such fear. i had no recollection of how i had gotten there or where i had been before. it was as if i had just come into existence at that moment. i was very awake very quickly. one of the nurses called me by name and told me that i had just had a seizure. i started crying. i didn't have seizures. i've never had seizures. it just wasn't possible. he asked me if i knew what day and year it was. i had no idea. i stared at him, trying desperately to pull that information out of my head, but i honestly didn't know. it was such a simple question, but i couldn't answer him. he told me that it was march 23rd, 2004 and that it's very normal to come out of a seizure feeling disoriented and confused and that i would start to feel like myself soon. but i was so afraid. i didn't recognize anyone around me.

i settled down, and my co-workers were allowed into the ER to see me. i made sure that someone called stean and my dad. stean got to the hospital quickly. things seemed okay for a bit, but then i started to get the "aura" that i had earlier in the day, before my seizure. sure enough, i went into a second seizure, after which they loaded me up with IV dilantin and a sedative which pretty much put me out for the rest of the afternoon. because of the second seizure, i was admitted to the hospital so some tests could be run to figure out what was going on.

Saturday, April 03, 2004