I'm weird about the scars I've gotten in the whole several months since being diagnosed. I like scars, in general, and I don't mind having them. But these are different. They're surgical. I didn't get these by doing something stupid (like all of my other scars). I couldn't control the circumstances or how it happened, and there probably won't be any funny-in-hindsight memories attached to them. I'm still trying to figure out how I feel about having them, especially since I know that within a year I'm going to have a much much larger scar and no right leg. I can't really comprehend that at all. I switch between making jokes about it and crying over it. In any case, I got it into my head that I want to document my cancer-related scars. Keep track of them (as if they'll go anywhere...). How handy that I live with a photographer! So here's one of the pictures Mandy took of all of them at once. As a warning, I'm not wearing a shirt but Bonnie and Clyde (the boobs) are covered, so probably not safe for work.

( As close as you'll probably ever get to a boob shot. Kind of a big picture, just to warn you. )

I got out of the hospital today. I've been in since Monday. This is the chemo that destroyed my immune system last time I had it and I ended up in the ER with a fever. So it should be exciting seeing if that happens again.

Traveler got me out and took me out for breakfast/lunch. There was a woman sitting behind him with her family (husband, two sons, one probably in middle school the other probably in high school). Her husband's eyes got sort of comically wide when I took off my hood. A bald girl?! What?! I'm going to gape for several minutes! It's a pretty common reaction. We were sitting near the register and this lady was up there with her baby who was wearing a cute hoodie with a monkey head for the hood, talking about how she was going to be the cutest monkey this Halloween. The mom sitting near us awwed and her husband and sons basically ignored her while she talked about how cute the kid was. We made passing eye contact and smiled at each other.

It's silly, but I like to think that in the couple seconds of eye contact we actually understood each other. She understood I was a cancer patient, not some punk teenager, and that I was exhausted and just got out of the hospital. She understood that my whole body hurts because of the stress and that my body is failing me in so many ways and it scares me. And I understood that she married too soon out of high school but would never think of divorce, that the way her husband grunted responses at her disgusted her, that she sometimes wished her sons would just hug her from time to time but they were too old for that now.

Like I said, it's silly, and probably not true. But she looked like she was the same kind of tired I am and I wish I could have given her a hug.

I've decided to write out a basic description of a day where I'd go in for chemo. I don't know about everybody else, but before I got cancer I had no fucking idea what chemo was like, and I think there are some people out there who are kind of wondering just what it is I'm complaining so much about. So here's a day in the life of Casey when I'm about to get chemo.

( Chemo )

I could probably write out a day in my life when I'm getting all my scans, even though they don't usually happen all on one day. I'm getting them redone soon to see how things are progressing.

It's kind of weird how people have mixed up the details of everything that's going on in my life. With the VS contest and people spreading the news and trying to get votes it basically turned into a huge game of telephone.

False: I'm excited for the NY trip, but mostly because I've never been on a plane before.
Fact: I've been on planes twice before and I love flying which is why that's so exciting.

False: My leg needs to be amputated because the chemo made my bones so fragile my pelvis broke by itself.
Fact: My leg needs to be amputated because I have a huge tumor growing in my pelvis, and the surgery is so extensive that if they tried to do all the work necessary to reconnect everything after removing the tumor I would bleed out. The chemo didn't make my bones weak, the tumor growing off them did, so yes, my pelvis did essentially fracture by itself.

False: The cancer metastasized into my shoulders.
Fact: Nope. They found some mystery spots in scans, and did a biopsy on my left shoulder, but there's no cancer there (which I, for one, am pretty happy about, even if I still haven't gotten full range of motion back in my left arm after the biopsy/surgery).

False: The amputation is happening at blank date.
Fact: No set date. We're waiting 3-6 months to see if chemo can shrink the tumor more to avoid cutting through nerves that I would like to keep, like the ones controlling bowel and bladder function.

At first I was upset. Really? Where are you getting all this supposed information about me? Now I think it's sort of amusing. One big telephone game. I have people all over the world believing all sorts of things about me because I thought it'd be kind of cool to enter a contest.
Anyway. Mostly pointless entry aside, if you check out the Body for Everybody contest page, they've listed me as an honoree. I know people are upset that I'm not a straight out winner, but seriously? I don't care about having the title of "winner". I just wanted a three day break. And I finally got that. Maybe with more drama then I would have preferred, but it's over. That's all that matters.

Agh.

Okay. So, I think almost everyone knows now that I've basically been given the trip to New York. Yes, it's real. Personally, I could do with less ups and downs right now, so as long as it stays this way I'm happy.

On a completely separate note, I don't want to be in the media. This is something that's come up a couple times on facebook, with people I don't know entering my story (pre-notification of sort of winning) to a local news station and apparently Oprah. Did it never occur to anyone that maybe I would like a choice in this? I don't like attention. Ever. This isn't a post-cancerous thing, this is the way it's always been. Yes, it's possible making my story public could get me great things, and maybe some millionaire will sweep me off my feet with the scooter we're fighting to get and will pay off my medical bills. I don't think it's worth it. Since starting all of this, I've had pretty much no privacy. I'm in the hospital for roughly a week at a time and I have people coming in and out at all hours, asking questions that I don't particularly want to answer, who need to know a lot of aspects of my life that I would really rather keep to myself. What little privacy I have left, I would really like to keep. It's no one's decision but mine, and I'm beyond insulted that anyone would think otherwise.

Mandy sent out a message on facebook with a section that was written by me. I'd like to point out that the only thing that was changed is that she took out a lot of swearing. This is not her sheltering me, it's her sheltering everyone else from the fact that I'm really fucking pissed off.

I didn't win the Victoria's Secret contest.

Because of the tampering they changed things. An uninvolved group of judges were given the top 50 entries in a random order, they picked two winners, and I was not one of them. I got a call from a lady from Victoria's Secret saying that the people who were actually involved in the contest were inspired by my story and saw that people were voting for me fairly, so they've given me a $500 gift card.

Thank you. But $500 does not make up for the fact that several forums call me Cancer Bitch and think I should die. $500 does not make up for the fact that I just dealt with months of drama and humiliation because I decided on a whim that entering a contest couldn't hurt.

Juli recently brought it to my attention how completely ridiculous it is that I demand my friends act "normal" around me. I'm not even acting remotely near to how I acted before, I can't exactly expect everyone else to be magically unaffected by the fact that I have cancer.

I'm finally starting to realize that I have a serious anger problem when it comes to my cancer. I'm angry that I have cancer and I don't know how to deal with it, because, generally, in the past I've had someone to blame for my anger. I can't blame this on anyone. No one caused it, or gave it to me, or could have warned me or prepared me for this. So I'm extremely angry practically all of the time, I have no deserving outlet for it, so it ends up being directed at all sorts of things and people that don't deserve it. I'm angry that my life isn't normal, so I demand my friends make it normal. It's not fair of me at all. Honestly, I wouldn't have even recognized that I was misdirecting all this anger if Mandy hadn't talked to me about it and brought it to my attention, and even then, I obviously continue to do it without realizing it.

I'm sorry for having completely unrealistic expectations of everyone around me. I seem to expect people to treat me like I don't have cancer, and then, in most instances, I still find a reason to be angry when they do. I know that I'll probably continue to misdirect my anger like this, for the duration of chemo, and probably for many years afterward while I deal with the amputation. I'm scared, tired, and frustrated about 24/7, and I don't exactly like to admit to faults in myself because I'm human and like to think I can do no wrong. Please tell me when I do shit like this. I can't fix it when I'm in denial.

Random Casey Facts
-I once had a guy tell me I'd make a hot night elf.
-A group of bikers started up conversation with me at the renaissance faire because they liked my earrings. No joke. They also invited me and Mandy to a party. We didn't go. We forgot the name of the place.
-Since starting chemo, nothing tastes as strong as it should. Sour candy is my new best friend. I just ordered sour lollipops in bulk online. I'm super excited for it to come in.
-I taught myself to knit over my Christmas break. I can only do the most basic stitch, but I've finished a scarf, and started some small arm warmers and a hat.
-I went to my first yarn store (Loop Yarn Shop). It was AWESOME. I want to live there.
-I actually want to get to the point where I'm knitting fast enough and with enough quality to open a store on Etsy and have an almost-income.
-You'd think with all the time I've got on my hands I'd actually get things done. But that's a huge lie. I'm making good headway on discovering everything on the internet, though.
-When Traveler was telling me about Firefly I thought I wouldn't like it because he described it as a sci fi western, and I generally don't like sci fi or westerns (...there are some exceptions). But Mal had me at "We're too pretty to die. Look at that chiseled jaw!" I lasted a whole, what, five minutes?
-I hate doing the dishes.
-We're taking care of Mandy's old roommate's cat, Miss Kitty Fantastico. We're mortal enemies by day, snuggle buddies by night. When she noticed I was shivering last night she curled up on my chest with her head on my shoulder until I warmed up and then rolled off me and laid by my side for the rest of the night.
-When I found out that dad, with encouragement from grandma, had been planning an intervention to keep me and Mandy from moving in together I was angry, but wrote it off as typical dad and grandma behavior (especially since it didn't actually happen). And then I found out he also had encouragement from other family members. In case any of them happen to read this, I'd like you to know several important things:
1. I see you less then five times a year. That does not give you enough insight on my immediate family situation to have the appropriate idea of who I should live with. You do not know how I interact with my father, mother, or sister because generally when our family gathers together I'm in a stressful situation, don't talk much, and am polite to my family no matter what we're like at home. In fact, I spend most of the holidays hiding from the family in grandma's basement, so don't tell me which, if any, parent I should live with.
2. I'm close to my sister. That is not an act I put on for family gatherings. We are actually very close. In fact, Mandy has done a far better job of parenting me over the years then either of my actual parents. She has plenty of experience in giving me important life lessons, taking care of me, keeping track of important things like my medical history, dealing with me when I'm depressed and knowing when to hug me, tell me I'm being stupid, tell a stupid joke, or give me a lecture. Dad is only capable of telling stupid jokes, which are not often effective for curing depression.
3. Dad's managed to piss me off several times within the span of a couple months and I don't even live with him. I can only imagine the hijinks we'd get up to if we lived together.
4. I'm a legal adult. If I want to live with my sister, I can. I'm not obliged by the law to even talk to either of my parents, so dad's pretty lucky he even gets updates on my condition considering how much of an asshole he's been lately.
5. Before I got cancer dad was not so subtly dropping hints about how I should get a job over the summer because he couldn't afford to take care of me. But sudden he's wealthy enough to take care of me and pay for gas for hospital trips and take time off work to get me to appointments? How interesting.
I guess you could say I'm considerably pissed off about this.
-Mandy does not read my email. Although I do appreciate that letting people think this means that they've stopped trying to sneakily insult her in their emails to me.
-I'm also considerably pissed off by how some of my friends have reacted to the cancer. I'm sure you're all convinced you're doing an admirable job, but some of you are trying so hard to act normal around me that it's like a fucking parody of how you used to be. I think the only person at faire this year who was capable of acting normal around me while acknowledging the fact that yes, I do have cancer was Damien. Thanks Damien!

Actually, pretty much all of the concerts I've attended have been memorable since I've only been to three in my entire life, but definitely the most memorable was the John Butler Trio show. Fucking amazing. It was one of those kinds of shows where people of all ages showed up and while, yes, it did smell like pot within ten seconds, there were also well dressed middle aged couples in the crowd. Traveler and I went, and it was just...ugh. So fucking great from the start. It was in Madison, so we went to a really awesome restaurant that Traveler likes (where the waiter sort of hit on me and apparently I destroyed his hopes and dreams, according to Traveler) and the show was just across the road, so we just hung out in there until the doors actually opened (because it was fuck-your-ass cold out). And yeah, this place was just...epic looking. Seriously. And the opening band was cool, even though I didn't catch who they were, and...UGH. Yeah, this is why I didn't write a post about it after it actually happened. It's still all overwhelming. The show was fucking amazing. At this point I don't know what all they played or in what order, or what witty things were said, but I do remember really fucking awesome music, and they sounded amazing live, and they did these solos after one of the songs that were fucking epic because they have a fucking standup bass player, and I love the bass, and then the drummer just went fucking crazy and it was AMAZING. A lot of amazing and epicness all around.

A woman introduced her child to me today while we were waiting in the lab to get my blood work done.

I've already forgotten her name and disease, but she's going in for treatment and apparently will look like me soon. She was cute, young, but old enough to be embarrassed by her mother introducing her to a stranger.

I explained that I was going through chemo, and the mother asked, as people tend to do, if things were going well. How do you respond to that? No, actually. I'll live, but I don't know if I want to half the time. I'm scared. I feel broken. Not exactly things I would say in front of her little girl. Not things I would say even if the little girl weren't there.

People call me brave, and it bothers me. They see me outside and laughing and happy and assume that I'm handling things well. I'm just happy to be out of the hospital. You don't see me at home when I'm crying uncontrollably for no reason. You don't see me panic over the upcoming amputation and what people will think of me.

It bothers me to be called brave because what I'm doing right now is surviving, and that's it. I'm not happy. I'm not okay. I'm certainly not brave. If I had any choice in the matter I would have given up a very long time ago. Before I even knew it was cancer. When I was still writhing in pain trying to fix a fucking bone tumor with ibuprofen. When I had to walk two miles with a bone tumor in my pelvis, in the winter, to go to physical therapy for what was "obviously" a pinched nerve. The pain is mostly gone now, but that doesn't make it any easier.

Things have changed. I made a post a while ago about how I don't pity myself, at least not often. That's a blatant lie now. I'm sure in a couple more months I'll be saying the same thing about my last post where I said I still have self respect.

I'm a mess. And telling me something like "you're brave", which I clearly think is a lie, does not make me feel better. It doesn't make it easier to face the day. I hate my life. I hate a lot of things about my body, and trust me, it feels a little ironic to know that I'm probably winning that Victoria's Secret contest. My body failed me with some random, rare little defect and now I'm wallowing in self pity feeling like my life is over and I haven't even fucking hit twenty years yet.

I'm going to talk to the social worker at the hospital about support groups. And I'm going to try to talk to the lady from the psych team, even though I didn't click with her. Logically I know it will help to talk to people who actually know what I'm going through, in some aspects if not all, but I'm also fully aware that there aren't that many osteosarcoma patients around, and there aren't that many amputees my age, and the support groups won't be as helpful as they could be if I had something just a little more common. Ugh. I'm a bucket full of angst.

My grandma recently sent this out in an email:
I am learning how to suffer....I have shingles. One suggestion, if anyone hears of a chance to get that shot to prevent it, well worth it, I would say. I did ignore it for a few days and could have gotten on treatment sooner...should have, to get any kind of effect...but, I am now in week three of the rash. I now understand that the unusual pains in back, hips, shouldes two weeks before the rash were not arthritis , but that neuralgia that accompanies shingles....I just hope that when the rash finally disappears (next two weeks???, or am I dreaming????) that the neuralgia does not remain.

I was tempted to respond with:
Dear family,
I've learned how to suffer. I have a giant bone eating tumor growing in my pelvis, I'm facing amputation at the age of 19, and I'm dealing with a particularly intense chemo schedule. I guess the difference is that I've learned to suffer in silence. I don't send out emails every time I'm in pain, partly because that would be ridiculously often, and also because I don't feel the need to be pitied. I find it depressing and worse for my moral to be bombarded with pity, but I guess we all deal with difficult situations in our own way. Begging for attention is not my way. I don't think it ever will be, because despite everything I'm dealing with, I still have some fucking self respect.

...But I didn't.

For anyone who's wondering, yes, the contest is over and it says I'm in first. VS hasn't contacted me yet. I don't know what's going on there.

Since the surgery I've been going around the house in my bikini top. It's the only thing I own that I don't need to move my arm at all to get on. It's also helping my self esteem a little. Yes, it's just me and Mandy seeing me, but the fact that I don't feel the need to suck in my stomach is huge progress from how I used to be.

I discovered yesterday that turning my head a certain way pulls on the tape holding the bandages, which pulled on a blister that was under the tape. Yeah. For the record, that hurts a little. I don't even know what the blister is from, but I also have several bruises around my neck and back, and we think they may have attached me to something to hold my arm still during the surgery that left them, and maybe the blister. Hopefully that's the only blister. Anyway, we have these little vials of liquid that help loosen the glue on bandages, so Mandy used some of that on the bandage and pulled up the bandage around the blister so I wouldn't accidentally pull on it anymore. I think some of the blister is still under the bandage. It's going to be a bitch when they take it off on Tuesday.

I'm back from the hospital. My shoulder's all bandaged up until I go back on Tuesday. It's pretty sore, and by pretty sore I mean it hurts like a bitch every time I move it. The worst part was definitely getting the drain removed this morning. The guy doing it was like "It'll feel like a two second bee sting!" That was one big motherfucking bee, and the longest two seconds of my life. Anyway. My arm's in a sling and I'm stuck taking sponge baths until the bandages are off. Good news is that Dr. King says based off the surgery, it looks like it was just an infection or an infarct because a bunch of liquid came out. We won't know the results until Tuesday, but I'm feeling pretty optimistic about it not being more cancer.

I was supposed to start chemo today. The good news is I'm sitting at home.
They redid all my scans last week when I was in. They found a slightly suspicious spot in my left shoulder (last time they found a mystery spot in my right shoulder...which disappeared), so they did some more scans on that area. Today when I went in they broke the news that they are concerned about my left shoulder. The scans definitely show something, and that something could be more cancer, a deep bone bruise, an infection, etc. They don't know. They scheduled a biopsy for Thursday. It might be nothing. But if it is more cancer then it is really concerning, because that means it has found a way around the chemo. Which is concerning because at that point they have to ask if it's worth even bothering. At this point I'm no more depressed then usual. I mean, it's not like I can get a huge surprise like last time they did a biopsy. It's not like they can say "Surprise, you have cancer." And I'm leaning toward it being nothing because I haven't had any pain in my left arm. I had some for a while, but it was muscle pain that I figure was from the crutches. The only difference from usual is that my left shoulder cracks more often. Anyway. The biopsy is going to involve minor surgery because of the awkward place it's at, so I'll probably spend a day or two in the hospital recovering and have a sore arm for a while.
And hey, good news, after talking to Dr. King he gave me permission to walk short distances without the crutches. So that's pretty sweet.

For future reference, I can't pay attention to five conversations at once. Please wait your turn to talk to me without talking louder and/or tapping me to get my attention. We are not in preschool, please act like adults. I'm sorry my conversation with a friend who has breast cancer is more important to me then whatever inane topic you came up with, but you're just going to have to deal with it.

In other news, my friend Kirk is pretty awesome. And by pretty awesome I mean he shaved his head for donations and got me and Mandy about $1500 yesterday. I know that there is no way I can possibly express how grateful I am to him for being willing to look ridiculous for me, or to everyone who was willing to donate money in exchange for cutting off part of his hair. I'm not sure Kirk reads this, but seriously, what you did meant the world to me. Just thinking about it makes me start getting all teary again.

I'm glad my cancer amuses you. It certainly amuses me that I would dare to want something to go right in my life when I'm spending more time in the hospital than at home and being told that my leg will be amputated at the ripe old age of 19 and dealing with the fact that I could be stuck with a fucking catheter and colostomy bag for the rest of my life if my tumor doesn't shrink any more. I'm amused by the fact that I might need lung surgery, as well as by the fact that they're constantly redoing MRIs on my shoulders because of mystery spots that they can't pin down. I am fucking rolling on the floor laughing my ass off because I have to make decisions that could kill me.

I'm amused by the fact that I put myself in a vulnerable position on the internet despite my low self esteem, despite the fact that I knew people would think "cancer girl" is hilarious, in the hopes that I might actually win something to brighten up three days of my fucking miserable life. I'm glad you feel secure enough sitting behind your computers with bodies that aren't attacking themselves to ruin my life even more. Yeah. It's hilarious to spam my entry. Cancer is funny. Amputation is funny. Dying is funny.

Today we met with Dr. King (the surgeon) to really talk about my options. To sum it up, because I'm tired and depressed and don't want to spend to much time on this, my choices right now are as follows:
1. Do the amputation sooner, like we had almost planned. Mostly because my pelvis is very weak, to the point where my previous (still healing) fracture happened without me even falling. I have to continue to keep weight off my right leg even after it heals completely to avoid further fractures, and surgery would sort of lop off that problem at the source (ha). What we now know is that because of how big the tumor still is, he would be forced to cut through the nerves that control bowel and bladder function. I would have to use a colostomy bag and a catheter for the rest of my life, as well as deal with having one leg. For very obvious reasons, this option is suddenly looking a lot less appealing.
2. Continue chemo for 3-6 months to see if the tumor continues to shrink, which would possibly allow him to avoid cutting the nerves controlling bowel and bladder function. It would at least be a chance.
3. Start radiation therapy, which we've never tried before because osteosarcoma doesn't respond well. It's possible it could shrink it, but doesn't sound very likely, plus it would unavoidably also be radiating my bowel and bladder and would probably stop all function.
4. Don't do the surgery. Give up. Stay on chemo until it kills me or die from the cancer.


I'm choosing option number 2. Yes, I'm putting it off for several more months again. I'd rather have at least a chance of retaining bowel and bladder function. I don't see the point in trying radiation when it probably won't work, and chemo has already proven that it can shrink the tumor. I don't want to give up yet, which is surprising at least to me considering some of my first thoughts while he was talking were "I want to die. God, I just want to die." But Mandy needs me, and I need Mandy, and that's all there fucking is to it, I'm going to keep trying.

Don't take chemo. It's doing nothing for my hair or skin, not to mention the stress is giving me insane bags under my eyes. But it does shrink any unsightly bone tumors you might have.

First of all, the Body contest? I am fucking rocking it thanks to you guys and many others who don't read this. Thank you so much. You can finally order the entries by how loved they are, and me and the guy next to me keep flipping back and forth for number 1. So, uh, this is me shamelessly begging for more votes because I kind of got my hopes up when I hit triple digits, and the guy I'm competing against seems nice and funny, but now that I think I actually have a chance at this I reaaally want it. I've never won anything like this before in my life. And following is more begging based off the prizes awarded (it's the same for people's and judge's choice).
( Basically I finally looked up the list of all the prizes and listed why I'm freaking out about this. )

Also. For anyone who hasn't heard, over the last couple days I started developing a low grade fever. Last night it hit 101.8 degrees F (I'm supposed to call in when I hit 101 degrees) and I got an extremely sore throat. We were told to bring me to the ER. I don't know. I guess I kind of expected for them to keep me overnight and treat me, but it turns out that they're going to keep me here until my extremely low blood levels and things go back up. I have no clue how long that will take, but it basically means that I'm losing several days of my two weeks off, and I very probably won't be able to go to Faire this weekend. I sure do love getting my hopes up about things and then having my plans be ruined because of some aspect of cancer.

I entered myself in the Victoria's Secret body contest, mostly because it was kind of ironic and people kept telling me to. I couldn't enter my whole story because it was too long, so it's not nearly as awesome as it could be. Anyway, if you vote for me I could win the prize of a "3-day body pampering getaway for 2 to NYC!"
I've never really wanted to go to New York (except to see ketene), but whatever. It may not be the trip of my dreams, but I will definitely accept three days spent really fucking far away from here. You can help me win by voting for me here.