Saturday, December 30, 2006

now it's real.

I'm scared and lonely and my hair's starting to go. I thought I'd be fine. I thought I'd got myself psyched up for this. But when you start pulling pieces of hair from the back of your head, when you bring your hand forward and you're holding dark brown strands of fine hair that never got sun-bleached by summer, that's when all this becomes real. It's only just beginning. It will only get worse. They're going to have to shave my head. I don't want to have to pull it all out or wait until it falls out. I'm scared. I'm going to be so bald. And yes, fine, okay, whatever, I can wear hats. But I've never worn hats without hair before. I keep telling myself, "It will grow back. This is temporary. It might even grow back curly!" But 6 months is a long time. And I would be lying to myself if I said I wasn't worried about my appearance. I'm way too self-conscious; most people know it to be true. I just like to deny it. Tomorrow is New Year's Eve. And for, let's see, the 20th year in a row, I won't be kissing anyone at Midnight. Not that it matters. It's silly that I even worry about it. But I do. Because that's me. Confident in myself in everything I do, except for that one thing. Oh well. I'll get by. I don't have a choice. Also: if anybody would like a lock of my hair, I will be auctioning them off on e-bay, antique silver locket included. haha. Joke.


Wow, so, not that anyone's terribly upset about it, I'm sure, but I apologize for not writing anything the past few days. Lots and nothing really has happened. Let's see. Today is Saturday. Upon completion of my previous post, I was mostly just chilling in my room, awaiting the biopsy results. Well, those results are in: I am in complete remission. My marrow went from being stuffed with leukemia cells to being virtually empty. Hoo-rah. Now everything else I go through is just to make sure they're completely gone and stay gone. Okay. Thursday morning, I got my first neutropenic fever; my first fever having no white blood cells. (You are "neutropenic" when you have no white blood cells, essentially no immune system). It was a very low-grade fever, barely high enough to be considered as such, but my doctors started me on antibiotics anyway. During the day Thursday, I had visitors! A friend of mine from highschool dropped by, and it was freaking awesome to see him. And then my brother dropped by for 20 minutes with two of his college friends. That was interesting. They seem like good folk, if a little bit nuts. But it's my brother, so I would expect as much. I think they like him anyway, so that's good.

Following my visits with people, I got sick. Like, no, really. My fever came back with a vengeance, and I started getting the chills like no other. I could not stop shaking. It was one of the worst feelings of my life. And I survived Hurricane Katrina. (too soon?) But yeah. So the nurses gave me two different drugs that made me stop shaking, and they covered me in hotpacks and blankets. After a few hours, the chills went away, and I was relatively back to normal. Yesterday, however, I pretty much just lay in bed all day. I wasn't too keen on moving. Also, in the morning, I had tried to shower, but I started feeling really nauseous after standing up for too long, and I actually did throw up. Yes, yes, I know. Pleasant. But so I went and stayed in bed.
bored yet?
So last night: I didn't really get to sleep much. I was told to stop eating and drinking anything at 8 pm, because I was to go for another CT scan later on that night. At midnight, the doctors had me drink a liter of apple juice mixed with this contrast liquid that pretty much just makes your stomach show up on the CT scan. (Oh, that's the other thing: I've been having a lot of stomach issues these past few days. awesome.) So, I drank the liter of juice, and then waited 2 hours for Transportation to finally come pick me up around 3 am for my CT scan. They shot dye through my IV, which helps my organs show up on the screen. It's actually really amazing what those things do. I don't know how they work at all, but they pretty much take cross-section photographs of your insides. It's sweet. So those results came in this morning, and they said everything was normal but for one thing. Warning - the next few lines are pretty gross. My doctor showed me the images this morning, and he said everything looked normal except for my intestine. Basically, my entire intestine, both long and short sides, is packed with, well, poop. They call them stools. I like poot. Symantics. So, that explains why my stomach hurts like a mofo. My doctor also just came in and told me I'm severely dehydrated, which sucks, but they've put me on an IV hydration solution, and they're going to be starting me on a pretty heavy-duty laxative. Today's going to be one hell of a day on my body, but hopefully by the end of it I should be feeling better. The other thing is, I'm not sure how much of this could have been avoided either. I mean, they're pumping me full of drugs. My appetite's been crap, as has my desire to drink anything. I think what I'm going through is fairly normal. It just sucks for now.

Otherwise, that's the update. My apologies for its being rather long. I tend to revel in verbosity. Oh, and just because I know some people are sitting at home with nothing better to do than wonder about possible doctor-patient intrigue situations, I did get a new in-house doctor. He's relatively youngish as well, and he's really nice. He's working on getting a few key websites unblocked for me, and he also said he'd bring me the movie Rushmore later on. So that's exciting. I've got a friend. Construe that how you will, you. okay, I'm finished. Pax and poot!

Wednesday, December 27, 2006

Oh, Joy!

So, I have taken it upon myself to figure out this whole "digital photography" bit. I've uploaded the pictures from my point-and-shoot digital, and I'm going to try and find a site where I can show them. Nothing special, mostly candids of my friends and me. But hopefully, in the next few months, I can actually put together my own website. That's the goal, anyway. Ooh, ooh, maybe I can create a website/blog/online portfolio for everything. Upload my words, my pictures, maybe even record some of my songs. That would be sweet. Things to think about.

In other news, today was relatively uneventful. I received another drip-drug, vincristine. Same 'ol chemo thing, killing cells at will. But apparently it's working. I mentioned yesterday that I had another bone-marrow biopsy. Let me explain that a bit more: The biopsy is a big deal because the doctors are essentially extricating a small chunk of my bone, as well as pulling out blood from within my marrow. Now, the marrow is the "blood factory," if you will. It is where we produce most of our red and white blood cells; it is where the dirty cancer cells chill out. When you get leukemia, the cancer cells take the place of the good marrow cells, and your marrow doesn't produce any more blood. So for me, the first two times they did biopsies, there were so many cancer cells in my marrow that the doctors had a lot of trouble getting any actual blood from within my bones. It was long and bloody painful. Yesterday, however, it was much easier. The nurse went in with her six-inch needle, drilled another (3rd) hole in my hip, and she was able to pull out a good sample of blood from my bones. Summation: the cancer cells are going away! What the doctors have told me is that they expect after the first few weeks for all of the cells to have essentially disappeared. The reason why the chemo takes 7 months is because they need to be certain there are no bad cells left. Better safe than sorry, in the end. So sweet.

In other, other news, I watched The Devil Wears Prada with my mom today. I'm still not sure how I feel about the movie. All of my journalistic instincts and notions are beating themselves up over the stupidity and irrationality of Anne Hathaway's attempt to break into the world of serious journalism by becoming a fashion magazine's assistant. Freaking gross. It's rather disgruntling. Also: she's really not that great of an actress. Sheesh. Okay, rant finished. Pax.

Tuesday, December 26, 2006


Currently listening to: whatever, it's on shuffle. Currently feeling: weathered.

I feel tired today. It is now my seventh day of treatment. I can tell my strength is diminishing. I took a walk earlier around the halls. All I wanted to do was take pictures of the outside. Because it's beautiful here outside. The sky is pink, offset by purple hues of pollution and the last of the drifting, gray clouds. The clouds are feathered, wispy and ephemeral as they do their "I don't care about earth" thing. I want nothing more right now than to be able to go outside. To take pictures of outside. My nurse came in a minute ago and was like, "Hey, so I just want to make sure you know not to take pictures of people and their name-plates and stuff. Because there was some concern expressed about your camera." My response: "All I did was take pictures of what's outside. I'm not that stupid. But thanks." Because I'm not that stupid. Why the hell would I take someone's picture like that? I took a picture of my door. Whoop-dee-freaking-doo. Calm down folks, there aren't going to be any incriminating pictures up on the internet of the oncology ward. Although we all know how sketchy it gets here. Anyway. That upset me a lot. It also upset me as I was walking around and I realized that I'm really freaking tired. I noticed my balance was off when I was taking the pictures. Now, that could just be because this camera's much heavier than the one I'm used to, but it's also because my muscles are atrophying. I know they'll come back; it'll be one hell of a workout, but they'll come back. But it scares me right now. It's killing me that I'm not my usual self. This isn't a will-power thing. I have plenty of that. This is a, I hate myself for self-destructing to this level, thing. For not being able to eat everything I love. For not being able to hop on a train and wander around downtown Chicago by myself, walking along State Street with my camera and my confidence, smiling at cute boys who don't notice me and little girls with ribbons in their hair, holding their mother's hands as they look at the shop-display windows. No. Instead, I've been relegated to a floor of a hospital wing, a bedroom with a big window that the sun never shines through. That's what's hard about this. The drugs, the shots, the bone-marrow biopsies (of which I had another this morning), whatever, fine, I can take that. I can't take confinement. I can't take people thinking I'm some stupid girl with a camera who is going to go and invade all of their private lives with her lens and "click click." So that's what's on my mind. Happy Boxing Day.

Monday, December 25, 2006

Currently watching: Pirates of the Caribbean, the 1st one

You really can't go wrong with Johnny Depp in dreds and eyeshadow. And the other guy isn't so bad either. Anywhoo. Today is Christmas. I saw the Eagles beat the Cowboys on television; that was exciting. Congrats to all you Eagles fans. I spent some quality time with the family today, brothers, parents and all. Also exciting. It was good to see them together again, even if it was only in this small hospital room. Sigh, they're all growing up. Tyler in college, and James working and doing well for himself, oh life, you go by so quickly.

Today was my sixth day of chemo treatment. I'm starting to feel my body slowly disintegrate. See, here's the thing with these drugs: They're known as "non-specific." This means that they target fast-moving cells without deciding first if they are good or bad cells. Cancer cells are crazy fast little buggers. They essentially don't have the chemical stimulant that causes normal cells to stop mitosis (cell reproduction). So they just keep on doing their growing thing, gradually overtaking all of the good cells in my marrow. The chemo targets these sneaky cells: it artificially replaces the stimulant that stops their reproduction. So. The fast-growing, evil cells in my marrow stop mitosing; they die. Awesome. Not so awesome, however, is the fact that, like I said, the drugs are non-specific. Basically all rapidly reproducing cells in my body are affected. Not to the the extreme degree as the cancer cells, but they die nonetheless. Example: your mouth is one of the fastest healing parts of your body. If you cut your tongue or bite your cheek, it heals itself quickly and easily. The chemo, however, takes these happy cells and tells them, "No, no, I see you as bad. I'm going to kill you. Die, cheek cells! Die!" Or something to that extent. So lots of cancer patients get mouth-sores. I haven't gotten that far yet, but I can tell the cells in my mouth are starting to break down. Chapped lips, and my teeth feel funny and whatnot. So that's fun. I haven't started losing my hair yet; the doctors told me that usually takes 2 to 3 weeks, but it's coming. Hair cells are fast-growing as well. Otherwise, my stomach pretty much felt like ka-junkish today. That's a bad thing. It's scary when you start considering the medley of drugs I'm taking. Chemo drugs make me nauseous, so pop an anti-nausea pill. You'll get your period, so here's birth control. Anti-virals, fungals, and bacterials, nightly shot to help boost my immune system when it gets low. Another one I can't remember the name of, an anti-gout drug. Because we can't have me getting the gout. Haha. Gout. These chemo drugs make you constipated (sweet!) so here's a natural laxative. Enjoy! And basically, all of these drugs hit me today with a vengeance. I just wanted to lie in bed all day cradling my poor belly. And so I did. And so that was Christmas. It wasn't that bad actually. Like I said, seeing my family helped. And many awesome people wished me a Merry Christmas. And so it was.

And just for kicks: My intern left me today. Sigh. I guess he's moving on to bigger and better/sicker patients. Apparently the interns rotate? Who knows, maybe my next intern will be cute as well. We'll see. And hope.

Sunday, December 24, 2006

My next-door-neighbor was talking about me today.

Right, so I have established the whole "no sound barrier" bit. So, today I was lying in bed and I heard him talking about the "girl in the next room." I heard, "she plays guitar," where he cut off and his friend made some lame joke about coffeehouses and whatnot. "Hah hah hah." And then I heard, "Yeah, she's young; she seems very young." And then they went off about the Bears who had apparently just scored a touchdown. Da Bears. Silly football. Anyway. I am currently sitting in my bed eating chocolate. It's delicious. Even though my taste buds are weirdly destroyed. Like, no, really. They've reached the point where water tastes funny. I've decided that Rice Krispies are absolutely fantastic though. Props to their snap, crackle, and pop.
I'm not really sure what to write right now. It's Christmas Eve. Merry Christmas eve? There is a ginormous coffee-table book sitting on my bedside table. It's called Annie Leibovitz: A Photographer's Life 1990-2005. This is the woman who took the notable photograph of John Lennon and Yoko Ono that graced the cover of Rolling Stone, way back in the 70s. She's an amazing photographer. And I have no idea how to get there, to get to her level. To a point where people know your name, want to hire you, want you to take their picture. But that's just been on my mind lately. I've got a great camera, a solid foundation of the basics, and I'm exposing myself to a variety of photographers. So now what? Wait? Take more pictures? I know what I want to do with my life. It's just the getting there that's going to be tough. None of this has anything to do with my cancer, I don't think. I don't know, maybe in some weird, twisted way, this will have an influence on my career. How cool would that be if all of a sudden I was "enlightened," and could take fantastic pictures that aptly and compassionately portrayed my love of human-kind? Hah. Hahaha. Doubtful at best. But we'll see what comes of all of this.
As an aside: a nurse just came in to draw blood from my arm. It amazes me how some nurses are awesome at doing it, and others are just okay. This woman just came in, tied the rubber band thing around my huge bicep, found the vein, and was like "BAM!" All set. Whereas yesterday, the nurse who drew the blood left a little present of a bruise wedged neatly in my elbow crook. So that was interesting. But I'll finish blathering on for now. Pax from the windy/rainy city/what the hell happened to winter in Chicago?

Saturday, December 23, 2006

Merry Christmas Eve eve!

Currently watching: Home Alone 3. You can call me lame. I'll call me Caroline. Most of the time. Sometimes I just go with "hey you." I realized today that I have been in this hospital for over a week already. It doesn't seem like that long ago (two weeks) I was released from Boston Medical Center and almost immediately went and got myself a wee bit shmanked at a birthday/Christmas party that same night. Three weeks ago, yes I'll admit it, I got fantastically drunk at a party. In retrospect, however, I blame it on the lack of blood in my system. I don't know what this has to do with anything, aside from the fact that bad vodka will always be just that. Don't do it.
In current-spect, I have been blown away by the number of people who have A: heard about my leukemia, and B: are responding with support. I'm not sure what I expected, coming back home like this. Well, I didn't know what to expect. Basically, up to this point in my brief life, I feel like I've experienced three completely separate and random worlds. And they've made me who I am now: Grade school, highschool, and college. Oh, the grade-school years: preschool through 7th grade with essentially the same 30 people. We were all crazy kids. We pretty much all went relatively separate ways in high school too. But I've heard from some of them, and honestly, I was really surprised. I don't know how many of my grade school friends would even recognize me anymore. I'm pretty sure I've changed a lot since 7 years ago, when I left ND. I mean, high school and a year and a half of college will do that to you. I probably wouldn't recognize their 13-year old selves either. But nonetheless, they've brought themselves back into my life. And I am so thankful for the knowing that they still care, despite our teenage years apart. I grew up with those kids, and I love them all and will always hold them in my heart, but I didn't really mature with them. That was high school. Oh, high school. Where would we be without you? Hell, who would I be if I hadn't gone to Culver? And then BU. I mean, really now. I've met so many good friends in Boston. And it's weird because all of a sudden, just because I guess I'm kind of sick or something, all of these people, all of these amazing and intelligent and caring people are letting me know they're still around. So that's what's been on my mind today. And I thank God for them all. I wish that it didn't take random acts of sadness to bring people together, but I hope something good comes of all of this at least. We'll see what happens. As it is, it's beddy-bye time for me. Pax from the world that is my individually ventilated room.

Friday, December 22, 2006

Upscale? Updike? no, no, wait. Update!

That's right! It's time for my intelligent yet clearly biased views regarding the current state of global affairs. Oh hah. Oh hah hah hah. Did I scare you? Because I undoubtedly could come up with some cynical insights into the current revolutions of the world, the snow that's backing flights up across the country, the lack of Christmas spirit and growth of Christmas shopping and its current and future effects on our society. But then, wouldn't I be just another blogger in the blogosphere imagining that my personal views actually matter in the grander scheme of things? Yes, yes I would. As it is, however, I won't subject the few people who may read my words to my (I admit it) relatively uninformed viewpoints regarding the state of affairs within the U.S. and the world.
What this blog is really about, aside from my ridiculous extrapolations, is what life is like in the hospital, living with cancer. It's really not that exciting. The chemo seems to be enjoying its gradual takeover of my body. I've pretty much been feeling like dirt the past three days, since I started the heavy drugs. I feel a bit better today though, which is good. I've actually eaten substantial foodings today. OH OH OH! I also finally got my damn amazing and Freaking expensive and beautiful camera last night! Holy freaking hell, this thing is so cool. It's super heavy, takes awesome pictures, and has more settings than something with a lot of settings. And although I will be broke as shit for the next couple months of my life, it's totally worth it. Holy crap, is it worth it. I'll put up the link to some sort of photo thing online where I'll post my stuff once I figure out how to do it. (Remember, I don't get Facebook? sigh.) But anyway. So that's about the most exciting thing going on right now.
Christmas is in three days, and this will be the second time I can remember not being in my house for the holidays. The first time was a few years ago when my family took a sweet trip to Arizona. I have some cool pictures from there as well. But yeah. It's weird when your traditions become turned on their heads. I used to fall asleep in our big flower-patterned chairs right next to the Christmas tree, reading my old journals and surrounding myself with candles and hot chocolate. It's funny how you don't really appreciate all the home-y things that fill your life, that you implicitly expect to always be there, until they're gone. So I hope everyone enjoys their family this weekend. Even if you don't always like your family. Or, if you really don't like your family, go find an old haunt from childhood, and spend some time there for a little bit. My mom, being from Canada and all that whatnot, likes to keep the house a brisk temperature during the winter. I was always freezing as a kid. So I used to go sit in the front window on top of a vent, hidden behind our no longer existent grimy linen curtains. I'd watch the outside world, and every once in a while the heat would turn on, and for five or ten minutes I would be toasty and safe behind my curtains. And that was so long ago. 12, 14 years, maybe. I don't want to go back to that, but I keep the memories. I smile over the silly things I remember. Because, really, they are what matter. No stuff, no things, no crap. Just be. And those are my personal views. And this is my (b)log. So there. Pax.

Wednesday, December 20, 2006

going to die... must..... blog.......... I started the chemo today. My body is currently revolting against the 3 IV drugs and 9 pills I have forced into it today. goo. short blog. few capitals. I feel like I have the flu, only moreso. I have not, however, thrown up. I also have orange urine. Yes, orange. A little out of season, but I'll deal. One of the drip-drugs was red. red + yellow = orange! (I think). I haven't eaten since 10 am this morning, but I soup is on the way. So I hope everyone eats something delicious for me tonight because it could be months until I get my normally ravenous appetite back. Okay, I'm going to go back to cuddling with my bear. She's soft and squishy and doesn't complain if I squeeze too hard. note my irregular thought-process. We'll blame that one on the fever. goodnight.
Currently updating the blog format. Comments, suggestions, complaints are all more than welcome. Pax.

Tuesday, December 19, 2006

I'm not pregnant!

And I won't become so for at least the next seven months. Why, you ask? No, no, I haven't taken a vow of absolute celibacy no matter who brings sexyback into my life. Today, I started taking birth control pills. And no, the doctors aren't worried about me having ridiculous amounts of unprotected sex. Rather, they are concerned with the amount of blood I would be losing due to having my period. And seeing as how I received 5 packs of blood two weeks ago in Boston and receiving 2 more again today, I also feel it is in my best interest to try and keep as much of that red stuff in me as possible. So I'm officially on the pill. Somewhere in our country a member of the Christian Coalition just died. Hoo-rah. In other news, I do NOT have the Epstein-Barr virus. The doctors retested me, and the results came back negative. This means that tomorrow morning, bright and shining early, I begin my chemotherapy sessions. I am taking so many bloody drugs tomorrow. Aside: the actor who plays Peter Pettigrew in the Harry Potter movie Prisoner of Azkaban bears a striking resemblance to my ex from BU. That's disturbing on quite a few different levels. Anyway. So drugs tomorrow. I am weirdly excited because this means that I am one step closer to being better and back in Boston. I miss Boston and all my friends. And I really miss the freedom to be able to walk around a city on my own with little or no regard for my own personal safety, just the confidence in myself and the joy of knowing that I am doing exactly what I want. BU peeps know this to be true, and Culver peeps should know why I feel this way. It's hard as hell to be contained for four years, and then to finally be able to do what you want, go where you want whenever, only to have that all taken away from you. I'm not an indoors person. I am struggling with this whole, "Okay Caroline, no more outside for you." Today is my sixth day in here, and I have at least 22 more. But I'm trying. I get to bike on a seated bike... It's better than nothing. Otherwise, I read. I guitar. I really don't Internets or TV too much. Some vague belief about losing my ability to think by staring at a screen. Or something like that. But anyway, I must contradict myself here and return to my Harry Potter flick. Mmm, underage wizards.

Monday, December 18, 2006

My next-door-neighbor just belched.

And I heard it loud and clear. As previously established, there are no sound barriers between our rooms. Awesome. I finally had my CT scan today. That was one of the most clinically disturbing things I've ever been through. The room was dominated by the PHILIPS Machine that scans you. There were blinking lights, reflective stains on the wall from a drip in the ceiling, fluorescent overhead can lights, a rather large, black nurse-woman with a lazy eye, and again, the Machine. She laid me out on the bed? plank? surface that moves into the huge hole of the Machine. Red lasers scanned me. A female mechanized voice told me to "Please, don't move. Remain calm." The visible machinery started spinning, spinning, spinning around and around my body, scanning my sinuses for infections. And I didn't move. I tensed up, but hell if I didn't move. And then the lazy-eyed nurse told me it's over. And she gave me her forearm to pull myself up with because my neck is mildly useless on account of the stitches and catheter. And then she told me she'd called Transportation, please wait here. So I sat in my blue-leather wheelchair and waited for Transportation to wheel me out of the nuclear medicine area and back to my room. I waited. I waited. The nurse left her little viewing room behind glass. The Machine made intermittent noises, reminding me that it now owned a little bit of my soul. I waited. And Transportation took me back to my room where I promptly collapsed on my bed and waited for my pounding heart to relax. True story. Still no chemo.

Sunday, December 17, 2006

How do you eat your gingerbread man?

I started with his left arm, making a clockwise journey through his appendages until I reached the head, saving the body for last. It is the squishiest, and therefore most delicious, part of said man. It was a good relationship while it lasted, but now I've moved on. I just don't think he'll be able to meet my needs on a long-term basis. Oh well. On another, happy medical note: my doctors told me today that I tested positive for.... Epstein-Barr virus! John! Tell us about the Epstein-Barr virus! Well folks, the Epstein-Barr virus is a member of the herpes virus family. It typically causes mononucleosis, but it is possible to have the virus without having mono (i.e.: me). Many people get EBV at some point in their life; it is a common virus, transmitted typically through saliva or sharing food. What this means for me: my doctors are yet again postponing the start of my chemo treatments until they know if they should be significantly worried about the virus and its effect on my immune system. There isn't really a specific way to treat a virus; there are no antibiotics to be given. Recovery from a virus is pretty much dependent on the effectiveness of your immune system. The chemotherapy will essentially be attacking my marrow, so I won't be producing any white-blood cells, the happy little fighters in the immune system. SO. They're doing more tests to determine the virus' potency. The doctors would rather not start depleting my immune system when there's a nasty little virus lurking just beneath my cell flaps. Because cells totally have flaps. Under which hide viruses. Shutup. But I should be starting chemo tomorrow. Unless they tell me that my HIV results were actually positive. Then I'll start weeping. So that's my medical update for today. Hoo-rah. Also: apparently there are 3 other people my age on the floor. The nurses are plotting to make us all hang out sometime. It's funny because this floor is less social than 4th floor Shelton Hall. (You'd understand if you were there). But I guess everyone has a decent reason, being in medical isolation and whatnot. But I'll share more of this breaking news as the story unfolds. props for over-long posts.

Saturday, December 16, 2006

If you fell down a well with no bottom or water, essentially a bottom-less pit, would you eventually starve to death?

I showered! It was the most unsatisfying shower I have ever taken. I'm clean; my hair is clean. But it was uncomfortable. I had to put the three little external tubes of my catheter into a plastic baggie, which I then had to tape over the entry and exit sites. I think I'm going to have a sweet little scar right above my collar bone from where they inserted the catheter. (note: a good lot of this I'm mentioning mostly for the shock-value. It's really not that bad). I also have two sweet matching holes in my back from the bone marrow biopsy. I seriously think it's funny how many holes I have in me now. There are a lot. Hold on, one of them is bleeding. brb. alright, crisis averted. So, I can hear pretty much everything from the room next to mine. I don't know why, but the conversations of the man who is staying in there are always totally clear. It's weird. He's on some sort of room isolation, but he always has people visiting. I'm pretty sure he's a marrow transplant patient. Good luck to him. I'm debating walking around the halls with my guitar, just to try and break the ice with my fellow sicklings. Maybe I'll wait until I'm bald to do it. Or, more likely, it's not going to happen at all. meh. On a slightly related, more serious note: I really don't want to lose my hair. I've grown rather attached to it throughout these many years. Rather, it's grown, attached to me. I can deal with the chemo, the nausea, blah blah blah, but I'm just vain enough as to want to keep my hair. I feel like that's reasonable, but I don't know. Least of all, my head is going to be cold. Most of all, I'm scared of the reactions of people my age. Because you don't normally see an attractive 20-year old with no hair. I'm pretty sure most people won't be sure how to react. Balls. Oh well. I'm not exactly expecting to meet the love of my life while I'm going through chemo. So, it should be okay, and I should stop worrying. Word.

Friday, December 15, 2006

Contemplations of a curious quality.

Sweet. 32 people have looked at my profile. About half of them have been me. Sigh. I fear that my words aren't reaching the audience they should be. The numbers are just too low. I wonder, should I hire a lobbyist? He or she would get my message out to the masses. All things to think about. Perhaps I should post a Facebook flier. Oh Wait! I can't get on to Facebook here! It's blocked. I cried a little when I saw that. Just a little. And then I continued to blog. One of the numerous nurses just brought me a little booklet called "Chemotherapy and You: A guide to self-help during cancer treatment." I'm actually not quite sure how I feel about it... I feel like the best thing for me would be to be around people my age with cancer, not to try and deal with it by reading some gaily illustrated booklet (I use "gaily" in its rightful sense, that being happily, colorfully). But I have to go through the motions and try not to look too disdainfully at the social-workers whom I know are only trying to help. You know how when you get kicked in the stomach, your stomach hurts? Yeah, that's kind of how my neck feels right now. Sweet! Too bad I wasn't actually kicked in the neck. Because if I had been, I would have retaliated against my attacker, and he would have many worse problems than a sore neck. Sadly, that is not how things went down. But that is neither here nor there. I must prepare myself, mentally and physically, for the looming arrival of my family. Oh! Side note! There's a helicopter pad on the roof. One of the nurses said they take patients for rides... Holy crap, how sweet would that be? I'm going to work on it. Aight, peace my hommies.


I got drugged today. The good kind, not the creepy-guy, put in your drink kind. Morphine and valium-related goodness. And then they threaded a tube into me. Starting at the neck, then into my vein, and back out again. Hoorah. It was the weirdest thing when they gave me the anesthesia. I felt like I was high, only without the pot. I wanted to laugh. Also, there was this thing above me, and I asked the doctor, "Is this thing supposed to be moving?" Because, seriously, it was. Just sort of shifting around a bit. Hahahaha, I told the doctor, "This is why I'm never doing acid." He said something; I don't remember what. Anyway, the long and short of it is that there's a tube in me, and I had my first experience with hallucinogenic hospital drugs. I'm sort of hoping they'll give me morphine for the extreme pain in my neck right now, but I'm not going to push that. The really funny thing is the number of people who have seen my chest. I, who have always been over-protective of my body, am now a thing to be poked, prodded, drained, and sewn back together. Awesome. I'm flaming exhausted right now though, so I'm going to see if I can't squeeze in a nap. They're doing a heart scan (insert technical term here) later, and I think a CAT scan as well. This is all so intense. I've become a weird combination of bitter and empty. I really don't know how to feel about all this.

Thursday, December 14, 2006


I am not some falcon to be set loose on the rabbits and squirrels in the forest, only to bring back my prey to whomever let me go in the first place. I am a human bean with real, raw, and occasionally bipolar emotions. I need no leather straps attached to my skinny ankles. I need my own open spaces and the freedom to kill small rodents whenever I feel like it. I also need to shave my legs. On a slightly unrelated note, I have an awkward intern! He's cute in that whole, mid-twenties, I don't get enough sleep, and I'm not quite sure how to talk to this girl (woman?) who could be my younger sister or, in a different world, my girlfriend. He was sitting in here asking me about my medical history (no, I'm not preggers; no, I'm not really down with ex, etc), and he was totally wired. I wanted to ask him if he drank coffee much, but I decided against it. Something about patient/doctor boundaries... Meh. Aside from that, nothing too exciting happening here. I might brush my teeth fairly soon. Oh, I put on pajama pants. That was exciting. I guess they take my vitals every four hours here. That's lame. So, no sleeping pills for me. Maybe I can ask for them, horde them, and sell them to shady middle-schoolers at home... Something to think about. For now though, I have to go tinkle into my little cup. They like to measure its volume. Fun times in the toilet. Wish you were here!

Bicycle, bicycle! I want to ride my bicycle; I want to ride my bike.

And.... I'm in the hospital. And.... my ass is actually numb. Correction: half of my ass is numb. They did another bone-marrow biopsy. For everyone who thinks otherwise, those things are not fun. Six-inch needles, bone-numbing serums, super intense marrow extraction... And the best part is it looks like I'm going to be getting quite a few more of these over the next six months. woo. to
what is the sound of one hand typing? pretty much the same as two hands but slower. i'm currently having platelets dripped into my vein, so can't really reach the comp. with my right hand. i've got a nice view of chicago from my room. no roommate either. goo. mmkay, I guess it's dinner time for me. I got my other hand back.

Wednesday, December 13, 2006

hurmh. currently contemplating wittier subject lines.

The dirty, dirty Mexican food was just that. Minus the bag of potato chips. It made me nauseous. Enchiladas verdes + Las Palmas + weakly affluent western suburb of Chicago = not so good times. I jammed with my brother tonight. No matter how amazing he gets at guitar, and he is damn good, I can, do, and will out-sing him any day. Thank God for that. Alright, more from the hospital tomorrow. pax.

Untitled II

So, I saw my Boston doctor yesterday, who is about way old, but super nice, and he confirmed that I have acute lymphoblastic leukemia (ALL). And then I flew home. And my mom pretty much packed for me. I was more of a lump than any sort of help. Not a cancerous lump though, so that's good. Actually, wait. .... I suppose that technically, I was a cancerous lump... hmm. Anyway. Today I went to the cancer clinic at the University of Chicago hospital. It's one of the best in the midwest (what, what!) in terms of treatment. They took more blood (I'm suprised I have any left) and told me about what the next two years of my life are going to look like. That's right, two years.
Basically, the full leukemia treatment is going to cover the next 24 months. I'll be 22 when this is all finished. That's weird. And also somewhat scary. murh. But so for the next six or seven months, I will be undergoing intense chemotherapy--a veritable coctail of daily and weekly drugs. Mmm, drugs. crap. I just opened up disk defragmenter, and this isn't my computer. it disappeared; I'm not sure where. oh well. Anyway. So, pills, IVs, yes, even a Spinal Tap! And it all starts tomorrow with another bone-marrow biopsy. I think I'll be in the hospital for between 7 and 9 days, beginning tomorrow. I just hope I can be home for Christmas. This chemo is going to be such a bitch. The nurse told me I'm going to lose my hair, and I was like, "Sweet, you mean I won't have to shave my legs for the next six months?!" She replied with a, "No, you probably won't lose your body hair; just from your head." Damn it. But my eyebrows will remain. Hoo-rah. I'm also going to try and bring in my guitar. We'll see how that goes over. Otherwise, if anyone wants to suggest books or movies or music, I'm not going to have much else to do for a while.
Okay, I am going to go eat dirty, dirty Mexican food with my brother and pater. Megan, you'd cry if you saw this place. Aside from that, I feel fine. I'm doing okay. I'm trying not to think about the next week+. Keep on keeping on, I suppose. Pax from Chicago.

Sunday, December 10, 2006


So, I'm starting a blog. Anyone and everyone who is interested in how I spend my days for the next few months can check here. I'll try and keep it updated; I'll also try and keep it interesting and mentally stimulating. We'll see. More later.