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?