Two days out from my fifth treatment and I am an overblown beach ball. My hands, my arms, my belly, my back…everything is just so…expanded. Part of me wishes that my nausea would finally come to fruition and it might deflate me. But the little pink pills I take twice a day make sure that I will never deflate with such a vulgar technique. Bulemia is probably not a good habit to stack on top of cancer anyway. Ugh, somebody beach this whale.
A Cancer Blog About Hodgkins Lymphoma
Archive for the 'Chemotherapy' Category
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This is a picture of the thing they implanted in my chest to make chemotherapy easier.
Except my “port” is not orbiting in space, above a beautiful blue earth and purple nebula, as the picture suggests. My port is located under my skin, about an inch south of my left collar bone. A tube connects it to my heart, by way of a big vein in my chest.
It is also *not* the size of the earth. (The earth was, seriously, just not a good backdrop for this promo shot. I guess it’s probably hard to make this thing look cool, though. You gotta throw a nebula or an icecap or something like that in to hip it up.) It’s maybe 1/2 inch in diameter. It’s part of me now.
I also sort of doubt that mine is stainless steel like the picture, I believe they told me it was plastic – although I surely don’t know what the thing looks like under there.
If I didn’t have this port, they’d have to put the cocktail straight into my arm. Getting chemo in the arm is the Dirty Harry, “Go ahead, make my day,” psychopathic way to get chemotherapy, from what I hear. The nurses cringe when they talk about it, as if they don’t like giving it like that anymore than people like getting it like that. Something about blood clots, burned skin, melted veins…let’s not talk about it…
I suppose I’m grateful, then, for this funny looking thing sticking out of my chest. It looks pretty stupid, though. They tell me I’ll have to keep it in for quite awhile after chemo is all over, in case the disease comes back and we need to do this again…let’s not talk about it…
I drove up to Madison last week to spend a few days with my brother and his wife. I ate their food, watched their TV and hogged the affection of their cat. I played a game with their cat, where I would sit on the couch with my computer, acting busy, and the cat would walk onto my face, shakily claw it’s way down my torso, and sit it’s butt on the “Send” key (or a similar key I wouldn’t want him to press with his butt). Actually, this game wasn’t fun for me. But the cat seemed desperate to play, and I figured I was a guest and all…
I came back to Illinois to catch a game of Pinocle with my Grandma and her friends at her retirement community. The ladies that play this game are very sweet, but they’ll bid you into the ground and steal your lunch money if you try to set them. (For those of you who don’t know the game, Pinocle is a game played with a minimum or three old ladies and a funny deck of cards, where you bet to see who has a gambling problem, then you try to “set” that person to prove to them that they are a poor decision-maker. The youngest person always has to eat a lot of cookies.)
There’s a mechanism in the human brain that makes you enjoy life in moderation, but cancer broke mine, so Saturday I went to Great America. It was half-price day, which meant that you’d have to also be half-insane to go, as the number of people in the small park was bound to exceed the population of Nevada. Nevertheless, the weather was crisp and sunny, and the rides were great (by which I mean they did not break while I was on them). The food, however, must have been made many moons ago by a sadist with a penchant for obesity. That was about as close to “Orange Chicken” as I am to Peking.
Great America has instituted a thing called the Fast Lane. For $15 you can buy 4 tickets that will allow you to go straight to the front of the line on (almost) any 4 rides you want to go on. One of two things will end up happening with this. Poor people will still have to wait in line, and rich people will never have to “associate” themselves with the squalor of those peasants waiting in the real line. Or, everybody will end up buying Fast Lane tickets and there will not be any regular line anymore, at which point they will need to create another level of line. Perhaps you could pay $50 and they’d blow you out of a cannon into Lake Michigan and put you out of your misery altogether. Either way, it’s an interesting mix of capitalism and classism that is touted as convenience.
Anyway, the day was an oppressive study in the sociology of crowds, but having, of course, purchased my Fast Lane tickets (hell yes I did), I didn’t wait long for any rides. As we left the park, I saw that the scrolling park marquee read, “Park crowded, please visit another day.” This is theme park speak for “ALL YE WHO ENTER MUST SUFFER! THE END TIMES ARE AMONG US! SAVE YOURSELVES!”
My fun was over by this morning. I woke up and dragged my feet getting to the hospital. They put me in the corner lazy-boy and hooked up the machine. It’s starting to get very routine. I think my body has adjusted to the steroids, so I don’t feel as antsy when I get them. The Benedryl knocks me out still, and I having an ever increasing disgust for the taste of the drugs. I was annoyed that I couldn’t steady my eyes on my reading after having the Benedryl. Out of obstinance I tried to fight the sleep, but it didn’t work.
There were less people in the Cancer Center this Monday. That means the regulars are either done with chemo, changed the day of their treatments for any number of reasons, or they are dead.
I weighed in at 182 lbs today. I started chemo at 149 lbs. Before cancer I was a constant 180 lbs. This session marks the half-way point in my scheduled chemotherapy treatments. Let’s hope the second half of treatment doesn’t beef me up like the first half has.
I’m working gigs all week. Like I said at the beginning, I’m going to keep playing as long as I’m standing. Cancer can’t beat me.
This is the day after my 6th treatment. The man in the mirror is back. He looks a little bit like me, but he’s bloated and red, and he’s got these hiccups that make his whole body shake. There’s this funny patch of dry skin between his eyebrows. It seems funny that such a localized side-effect would be so squarely localized in the middle of his face, poor guy.
I might look like that if I put on a bunch of weight and had something SERIOUSLY wrong with me.
Dad’s going to be in the paper in a couple days for being such an extraordinary accountant, etc., so the photographer came to the house today to capture the essence of Rick Hahn in his natural environment. Somehow Mom and I were convinced to be in the picture with Dad, too. That might have been alright, I’m not shy, but in the past few weeks I’ve developed this unfortunate reaction to the Bleomyacin (chemo drug #2). The nurse calls it a rash, but I call it my face.
Fair enough, I suppose, Bleomyacin is known for it’s skin reactions – but couldn’t it be somewhere else? Like on my arm? Or my ankle? Or, for god’s sake, ANYWHERE that’s not going to be plastered all over the local paper? Come on now, my face?! Is that necessary? What kind of bad karma have I gathered that makes the noticable side-effect of this treatment located on the one patch of skin people look at?
I’m not a pretty boy or anything, and I’ve never spent enough time on my looks to invest much emotional attachment to them, but, by design, they are sort of…noticable. So it can be difficult to restrain an identity crisis everytime I look in the mirror and I’m either 10 lbs heavier, 10 lbs lighter, karma-faced, puffy, or basically – staring at somebody I’ve never met.
William
There’s a tall, thin man sitting in Room B, white and maybe 50 years old, adjusting his big glasses and thinking about trimming his greying mustache. He’s wearing a yellow-and-black flannel shirt under his red button-up sweater. His bony legs hardly fill his jeans, and he’s holding up his left wrist, but letting his hand fall. His body seems frail. He sits up straight on the edge of the bed, waiting. His bones hang off of him. His teeth are showing like he’s smiling, but that can’t be. His broad forehead is blanketed by the florescent lights coming from the ceiling of Room B, and I think he’s staring at me. His glasses are thick and round, so I can’t see where his eyes are, but I think they are fixed on me.
He scratches himself and lowers his wrist, looks around. He’s getting impatient, but he doesn’t seem like an impatient person. The nurses have left him there for maybe 20 minutes now. I wonder what he’s waiting for.
I’ve seen him before, sitting in a chemo chair, moving slowly and not talking. Baring his teeth like he’s smiling. Or a different time, with the white blanket pulled up to this chin, his mouth open a little, spilling it’s contents over his cheek, his eyes closed and his eyebrows raised.
The doctor comes to talk to him and hands him a piece of paper before leaving. Alone, the man reads the papers in his shaky hands. He slowly folds them, unfolds them and reads them again. He covers his teeth while he’s reading, and raises his eyebrows and peers out the door. Giving up, he folds them twice, into quarters, and puts them in his chest pocket, behind the red vest. He holds up his wrist again, like he’s looking for the time, but there’s no watch.
What a slow, thin man. He might have been a criminal, or a teacher, if he had the energy or the coordination. I think he might be homeless. He has large ears, and a reasonable nose that sticks out between his glasses and mustache like they are part of a set. He needs a shave.
He walks over, closer, and sits in the blood test chair. He’s staring at his wrist. Slowly, quietly, as if he were talking to rabbits, he says, “Oh, now don’t you hide. You were just there.”
The nurse turns to him, “What?”
“He was just here. I’m talking to this.” And he nods slowly to his wrist. I can see him better now, his eyes are dark and his hair is unkept. He is so tall and so thin, maybe if he didn’t move so slow his bones would break.
“Oh, you’re talking to it.” The nurse says, distracted. She’s preparing a needle to take his blood.
“I guess I’ll have lunch here. I’ll have lunch here.” And he shows his teeth, smiling.
“Yes, we all know how you like lunch here.” The nurse says back to him.
She ties up his arm and taps his wrist. “Are you still talking to it?” She holds the needle above his skin.
“Yeah. Come on.” He stares at his wrist.
He lets out a yell when she puts the needle in him, like a meow, but with too much saliva in the back of his throat. He looks away. I look away.
“William, did the doctor tell you about the chemo we’re going to give you? William, you’re going to lose your hair. William, did the doctor tell you that? Did he tell you that you’d lose your hair?”
William turns his head toward the nurse and covers his teeth. It barely gets out, “no.”
“Yes, you’ll lose all your hair.”
He is silent for awhile, but as he’s slowly wandering back to Room B, “I’m going to lose all my hair.”
“That’s right William. All of your hair.”
I visited the doc today. He said that the hiccups, the dry skin, and really, every side-effect I’m having is from one particular drug in the chemo cocktail – the one called Bleomycin. He’d never seen hiccups before (it’s the overachiever in me), but they were ‘described’ as a side-effect of the medicine. He told me to go pick up a liquor from the local liquor store that would do the trick. And in case the 45% alcohol didn’t help, he also filled out a prescription for a muscle relaxant as a backup.
After sucking on a few alcohol soaked sugar cubes, as suggested, my hiccups had still not left, so we went with the backup plan. The pills chilled me out a bit, but every three hours the hiccups would be back. I have a stubborn diaphragm.
The doc also said that there’s an 80% chance that I won’t have to do radiation. I don’t know where he gets this statistic, but it sounds nice. In reality, we won’t know if I’m in the 80% that doesn’t or in the 20% that does until I get my CT/PET scan next month and we see how Tito’s doing. I’m encouraged, though, by the progress my body has made through this, and I’m crossing my fingers that I might be in the 80%. Cross yours too, ok? Radiation is a nasty process that I don’t want to go through (I guess the same could be said of chemotherapy…).
8 Bells and All’s Well
I found this boat I want to buy. Well, it’s more like a yacht. Like, a big yacht. And I was watching this travel show over at my girl’s place the other day, and I found this killer house I want. Ok, it’s a mansion. Ok, it costs $14 million. But the boat only costs $7 million, so maybe I’ll just start with that?
Well, I’ve got a long way to go from here if I’m planning on getting there. My total income last week was the $10.00 my grandmother slipped me when I wasn’t paying attention. And I’m looking outside at the damp weather and it doesn’t look like I’m going to be hacking away at that $7 million today either. Not that it needs to be sunny to earn a boat, but it provides the right inspiration.
Ah face it, I’d be lucky to just see the ocean these days, let alone commandeer it. But when I’m done with this mess, ooohhhh baby, I’ve got some traveling to do.
I was thinking about my $7 million yacht while I was at chemo this time. My brother was there and he brought it up, so it’s really his fault (I had sent it to him as my Christmas List). See, the boat seats twelve, so you all would have to take turns coming with me. But one of you would have to learn how to steer the thing, because I will be in the hot tub. Find some place nice so that I can go scuba diving when we drop anchor. And one of you would have to cook, unless you want to eat toast and microwavable hot pretzels for the whole trip (that’s all I can cook, sorry. Oh, and canned soup. I can make a killer bowl of canned soup.).
But at night I’ll play piano (yes, of course there will be a piano aboard, duh), so that could make up for the three meals of toast that you just had. And if whoever is steering manages to keep us away from pirates and reefs, we could last out there a very long time (lots of canned soup).
You notice that I don’t like talking about the actual treatments anymore? I’ll find anyway to talk about something else.
Chemo smells like alcohol swabs and it tastes like saline and it looks like a bunch of tubes and needles. I feel like writing a letter of complaint to the makers of “Chemotherapy” and giving them a piece of my mind. This is the most expensive product I’ve ever had somebody else pay for, and if you ask me, they could do a little more in the “customer satisfaction” category. The medical field has got to be the only industry that can charge such astronomical rates for products you’d rather puke on than buy. I’m in the wrong line of work, that’s for sure. I mean, what if I showed up at a gig and was all like, “hey I’m going to play a bunch of really terrible, screeching crap for the next four hours, and it’s gonna cost you $10,000.” If only I could convince people that it was good for them.
MY PIANO MUSIC WILL SAVE YOUR LIFE.
(It’ll cost you, though. And give you a migraine.)
Right, so the 8th treatment. It sucked. But the nurse, who is still cute, but smells like chemo (sorry baby, that’s one of my top 5 turn-offs), told me that the textbook treatment for Hodgkin’s Disease is 8 treatments of chemotherapy. Which would mean I’m done. In fact, the order for chemo that she has for me only includes 8 treatments. So I’m done. Yay! I’m done!
Riiiiiight. Fat chance. Everybody back on the boat, we ain’t finished yet. I’ll get a PET scan on Saturday and then go see the doc, who will most likely tell me that the cancer is gone, but we’re going to need to do 2 more months of this crap-o-therapy just to make sure I’m good and pacified before they hand me the final bill.
You see why I’d rather talk about my $7 million boat and your toast diet? They keep these yachts in Panama before people buy them. I imagine that’s so they can deliver them to the East or West coast, as well as stay away from hurricanes. (sigh)
4 more treatments I can do. I will be a bad ass when I get done with this. Go ahead, punch me in the face, I don’t care. I went through chemotherapy, you can’t hurt me. I’m unstoppable.
But you’ll need to excuse me because I need to go lay down. And microwave another hot pretzel.
8 bells and all’s well.
I Was So Nauseous That I Ate Everything
I went in for treatment #9 yesterday, despite not having any cancer to put it towards. The doctor said that I was in complete remission, so we would do 2 “consolidation” treatment cycles to make sure. That means 4 more treatments, which has me done with this crap on January 9th, 2006, assuming all goes well.
My blood counts are still high and my hair is sticking around, and in a lot of ways, you wouldn’t know I’m a chemo patient unless I told you.
And speaking of, I suppose I should be more careful about when and where I tell people. When we went out Wednesday night to celebrate the PET scan, I told every person that would listen, or was at least in ear shot. The people that knew about my diagnosis were happy to hear it, but those friends of mine that hadn’t heard were a little taken back.
“You got what?” They would shout over the music.
“I beat cancer!”
“You’re being transfered?”
“No,” I’d shout back, “I BEAT CANCER!”
Then their face would go blank and sheet-white and they’d mouth, “You had cancer?”
“Yeah, but I beat it!”
Still shocked, they’d say mouth again, “You had cancer?”
Anyway, it was probably kind of a buzz-kill for those who hadn’t heard, but maybe they had just missed the point of the good news.
So. 4 more treatments. I’ve decided that now that I’ve beat cancer, I’m not going to take these treatments John-Wayne style. I walked right into the chemo room and before I even sat down I was asking the nurse to just put me out. Just give me some of that sedative stuff and wake me when you’re done. I don’t want my brain to have anything to do with it this time. And while you’re at it, I want some pain relievers, and some laxatives (believe me), and some fiber (again, just believe me), and I want more anti-hiccup stuff, and antacids, and the strongest anti-nausea stuff you’ve got. Give it to me now.
The session was pretty easy, being asleep and all. William was there, and so was Shirley. The two old guys down the way were talking about not being able to taste their morning coffee anymore, and their wives were talking about how their husbands can’t taste the morning coffee anymore. Shirley told me she was “really praying” for me, although I can’t help but think that there are others that could use it more. I heard William give out a growling scream from one of the rooms about half-way through – probably something with needles, that guy hates needles.
I woke up and went to the bathroom and turned the water red – that was how I knew they’d already put the drugs in. It was kind of a surprise, but I was glad that I slept through it. Like I said, forget that John-Wayne, take-it-like-you-want-it nonsense, I’ve been through enough.
Because I’ve gained 40 lbs since the beginning of treatment (yeah, I know, it feels like a lot to me too), they had to up my dosage of chemo. That means more of everything – Bleomyacin, steroids – everything. By the time I came home, I was so nauseous, I could hardly wait to eat everything in the house. (It’s a hard feeling to explain.) I had a chicken stirfry, and two chicken sandwiches, and chocolate and then, later, a whole spread of Kentucky Fried Chicken dinner. I reeeeeeally hate steroids. I swear I’ll be 2 bills by the end of this nonsense.
3 more treatments to go. Take it Elvis:
I’ll a-have a b-b-Bleo Christmas with chemo
I’ll be so bloated, just taking that drano.
I’ll be doin’ alright, by January 9th,
but I’ll have a Bleo-o Christmas.
What Does Chemo Do To You?
Ok, this one might be a little too much information for you. But if there’s somebody out there that will be going through all this, you should read this. Or maybe you shouldn’t. People ask me on the bad days what chemotherapy is like, and although I consider myself articulate, I have a really difficult time explaining it. Its difficult to describe the forest from the trees, right? But I figure I’ll try to describe it a bit here. Careful reading this.
Chemotherapy side effects are worse than cancer, that’s for sure. With cancer, most of the time you’d hardly know it if some doctor didn’t tell you. I mean, I was pretty hard up by the time they found it in me, but sometimes cancer can go all the way to stage IV and you’d never know it.
Chemo, on the other hand, you can never forget that. Not for a second. There’s no ignoring chemotherapy. It invades every cell by the end of it. You spend months marinating in a stew of toxic wastes that are out to kill you. And I don’t think that’s overly-dramatic. You try it sometime and see if I’m not right.
Well, I’ll tell you what I can about chemo. I’ll go day-by-day.
I’ll start on Sunday, the day before chemo. Remember when you were a kid and you dreaded Sunday night because it meant that you had to go to school early the next morning? And maybe you hadn’t done your homework yet, and basically, your fun was just over? Or maybe its still like that for you, where you get to Sunday night and you start to dread the coming work week, and what hassles are going to happen this time, etc., etc. Well, its a little like that, but I think I can, without hesitation, claim that my Mondays are worse than yours.
The dread of chemotherapy now starts much earlier than Sunday. At first it did start on Sunday, but then I realized how bad it was, so I moved the freaking out back a few days to Friday. Then Wednesday. I knew it was bad when the dreading would start on Friday, 9 days before my chemo treatment – before I’d even recovered from the last one. But now I dread it all the time. I get no rest from the dread of chemo now, because I know it gets worse every time and, save a few surprises, I know just what’s going to happen to me.
And I suppose I should feel good that I only have 2 more treatments. That’s what people keep saying, at least, “Hey – only 2 more, right? That’s gotta feel good.” It doesn’t. And people hate that answer. If I’ve learned anything from the progressive side-effects of chemotherapy treatments, its that the last treatments will be the worst. I don’t look forward to them, and knowing that they are coming doesn’t make me feel any better, even if completing them means its all over.
I try to distract myself on Sundays, and thankfully, I think everyone around me tries to do the same. The only thing you can do is try not to think about it. The doctor gave me anti-anxiety pills to calm down, but I don’t like taking them. So I just try not to let my mind rest on it.
I sleep as late as I can on Mondays. I don’t want to get up any earlier than I have to, because I know if I have time to think, I will. I take a shower and put together a bag of stuff. I usually bring my computer, my iPod, my headphones, maybe a book. I usually never use any of the stuff because the Benedryl knocks me out, but I bring it anyway. It makes me feel better holding onto something.
Chemotherapy is about a 4 hour process. They take your blood and start your IV right away. They fill you with steroids, saline and Benedryl to get your body ready, and they wait for the chemo drugs to be brought up from the pharmacy in the bright green zip-lock bag they come in.
I have a mental reaction to the smell of the alcohol swabs and taste of saline now. They use a lot of alcohol swabs during the whole process. They wipe down your port with alcohol, they swab the ends of the IV before they insert the vial for your blood, or the syringes full of chemicals. I can’t smell or taste the chemo itself, so I guess my mind has just decided that the bad stuff must smell like alcohol and taste like saline. The reality, of course, is that the saline and alcohol are the only things that are good for me in the whole process, but that doesn’t stop me from wincing whenever I smell or taste them. I know what’s coming when they are around. Sometimes when I’m not at chemo I’ll remember the smell of the swabs or the taste of the saline and I’ll jerk my head to the side and try not to puke. I really freak out sometimes.
You don’t really start to feel anything until an hour after you’ve been given the drugs. First you go to the bathroom and pee red. Maybe that’s too personal to tell everybody, but I’m telling you anyway. It freaks me out every time. I always forget its going to happen. It’s from the Andreomyacin, which is a red chemical, and the first drug in the chemo. Some people pee red for days.
The heat starts about then. The heat comes from inside me, from my chest I guess, and radiates into my face. By Tuesday I’m flush red all over, and my face is puffy and hot. My skin starts to feel softer than usual, I don’t know why.
A heated, sharp indigestion starts about the same time that the hiccups start. My nurse thinks the two are related. I think its all the same thing. The hiccups last for two days. They are double hiccups, where your diaphragm pulses twice most times and really shakes your body.
The nausea sets in immediately, despite all the drugs they give me. It’s a sharp nausea, like someone is stabbing you in the stomach, and trying to pull your throat out by reaching in through your mouth.
But, despite the nausea, and despite the fact that eating just makes it worse, you are ravishingly hungry. You would eat rice cakes willingly, you are so hungry. You eat until the nausea takes you over in a big wave, and you lay down and cry and wait for it to pass, and then you eat again, until the wave of nausea comes again, etc., etc. Its awful.
But the effects of chemo aren’t just in your stomach, chest, or throat, they are all over. Your eyelids droop and the muscles in your thighs twitch, and your abdomen expands with all the food your body won’t digest (go get some ex-lax and fiber bro, its going to be a long week…).
By Wednesday my legs are usually dog meat, but the hiccups are gone. The heat is still around, but its second to the sheer exhaustion. I mean, absolute EXHAUSTION. Not like “I’ve had a long week and I haven’t slept much,” or “I just lifted weights” kind of exhausted. Its much more powerful than that.
Last time, I woke up with three fingers numb on Thursday. The doc says that’s nerve damage from the Vinblastin. I say that’s some really nasty stuff for pianist. He’ll cut out the Vinblastin if it happens again this time.
I don’t really know when it happens. Not right away. But sometime between Wednesday and Friday my mind starts to fall apart. It lasts for 4 or 5 days. I can’t remember people, or conversations, or I’ll stop sentences halfway because I can’t think of the word. It goes away, though. I think.
By Saturday and Sunday I’m recovering, and I’m usually ok by Monday. Then I have one good week to run around like a mostly normal person, but with more dread, until I get hit again. The exhaustion never totally leaves me, and I can’t stand very long, but its not as bad during what I facetiously refer to as my “good” week.
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