Livestrong: Stigma and Silence

So, this isn’t the documentary I was supposed to be in. While in my face to face interview with Mat, I spoke about the stigma associated with cancer for a college student still struggling to go to classes. I talked about not having any hair, and being pointed at (and called a lesbian…). I also spoke about the difficulty of being a cancer patient when people don’t really know what to expect. A guy I had gone out with a few times refused to see me again because he was afraid he could catch it, even though we were just friends and no longer considering each other as potential dateable people. (I wanted to punch him in the face.)

Enjoy the documentary!

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The Joy of Bathing

Yes, strange title, I know. But, those who know me know I love my bathtime. Half of the time, I don’t even wash; I just like to sit in warm water. An old boyfriend from high school thought I had gills hidden under my long hair because I could lay in the water with just my nose peeking out for air for hours on end, with my toes maneuvering the stopper and the water faucet when I got cold.

The first thing I did when I got my first laptop (back in the 90s, oh yeah!), I bought one of those 50-100′ phone cords, and ran it from my bedroom jack into the bathroom. I taught myself how to balance my laptop on the side of the bathtub so I could sit in the water and be halfway productive, even if it meant just chatting with random people, mudding, and posting on usenet forums. When we finally got DSL in 1998 or so, the same thing would happen, but with an ethernet cord. I’ve been balancing my lappy on the bathtub wall for about 12 years now, and have yet to drop one in the water.

Wireless internet was really my downfall. Once I didn’t have to drag the cord into the bathroom anymore, I would take (on average) about 2 baths per day, not counting my shower in the morning. I don’t even use bath salts or bubbles on a regular basis – just the water. I guess I’m a bath ‘purist’. When I moved to the UK for school, I was so happy I didn’t have a shower in my flat that I almost cried. When I moved back to the US, I brought a shower fixture for my bathtub with me so I wouldn’t have to stand and bathe ever again. 🙂 Some call this lazy – I call it progress.

I collect rubber duckies. One evening, I decided to bring them all with me into the tub… and I couldn’t fit them all. Now, I’m not fat, but I’m not thin either, and I still had 8 or 9 on the side, just watching the elaborate battle I had planned. No, the battle never happened because I was interrupted, but the idea is still there. My little sis in Phi Sigma Rho gets me rubber duckies every year for Christmas, so I can owe it to her that I have so many.

This post really has no ‘purpose’ so to speak, but I needed to write about something other than cancer/college woes. I ended up dropping most of my classes because I was too far behind, and now only have 6 credits (one 4-credit class, and 2 credits of research). Sigh. I have chemo again soon, and I’m not looking forward to it. Having cancer sucks SO HARD. It makes life dull, with very little to pass the time. It’s mainly full of not feeling well, followed by not feeling well, then maybe a nap, followed by not much to eat, and then not feeling well again. Of course, TV and videogames are interspursed, as well as playing the piano/oboe/violin. You’d think I would have time to do coursework, but between not feeling well, and not feeling well, I just can’t be bothered.

If you have cancer, and you are a fully-functioning member of society with nary a side-effect to keep you at bay, then more power to you. I envy the crap out of you. Now, back to my bath.

Scholarly Frustrations

Cancer is a real party-killer. Here I am, in the prime of my life, trying to enjoy myself at college and *graduate* in the next twenty years. But, despite what I try to do and accomplish, chemo and/or side-effects ruin my day. I have a midterm on Thursday, and I was too sick to go to class last week (thanks a bunch, chemo). We didn’t have class on Tuesday because our professors were at a conference in Portland, and then we’re expected to show up on Thursday morning, ready for a midterm!? Are you f-ing kidding me? If it were mapping or hydrology, I’d be fine. But it’s that stupid mineralogy class that is going to end up killing me in the end.

I really can’t afford to get shitty grades. Because I was so sick before they discovered it was cancer (DAMMIT I hate cancer so much), I missed week after week of school for one reason or another. I think my GPA dropped well below a 3.0, and now I’m doing all I can to stay afloat. Of course, it doesn’t help that I’m a physicist and incredibly lazy. Those two things do not go hand-in-hand.

I try to register for classes and keep on top of it, like what I was going to do with this quarter, but I just can’t. I was so upset tonight that it kept me from really sleeping that much. I’m having to teach four classes this week because one of the other TAs is gone (looking at a grad school for his PhD, since OSU isn’t good enough for that apparently), so I had to pick up the slack. I found out that I have to proctor an exam tomorrow night too, so there goes four hours of studying.

I’m not going to make it. I really don’t know what to do, and in order to keep my head above water and get me going to classes again, I stopped my low-dose chemo on my own. (PLEASE don’t yell at me, I’ve already been yelled at, thanks. I know what a retard I am, I get it.) But, at least I can function for the time being. It really isn’t doing much good for me, but dammit if I’m going to take another whole year off. Fuck that noise.

There really is nothing good to report. I finally got to sleep around 4:15 this morning, and then a thunderstorm woke me up not more than 20 minutes later. So, I’ve been up ever since. This is just NOT my day. I’m tempted to email my professor in mineralogy and tell him I just can’t take the exam on Thursday because I’m so behind. But then I’ll even be more behind. What’s a girl to do?!

I know other young adults with cancer and trying to go to school at the same time have had my problems. But I really don’t know what to do at this point! Should I just take an incomplete, and then wing it for the rest of the quarter? I’ll be damned if I’m held back for another year.

Grrrrr

I’ve had two rounds of chemo now, since I had my relapse a month and a half ago (I’m on two days on, then 15-18 days off – it’s a weird schedule, actually… a bit different than the first time). I feel like shit, I’m nervously waiting for my hair to abandon my head, and I’m still trying to be a full time student and teacher at the same time.  It’s really, really hard.  Just this week, when I was in the chemo dungeon at the hospital (I call it the chemo dungeon, even if it is a nice room, because it feels like torture), I tried to get some homework done. One of the nurses came by to see how I was doing, and she commented on what class it was for.

“It’s Mineralogy, a class where I have to learn over 100 minerals by sight and chemical name, much like o-chem.”
“Oh, Honey, you won’t get through that class this year. You have cancer to worry about.”
“Fucking watch me, then!”

Yeah, I did say the f-word.  Usually I’m so nice to the nurses, especially since they’re super awesome. But, I’ve had mood swings, I’m still stuck in a weird limbo between being a functioning woman and menopausal at 25, and HORRIBLE hot flashes where I want to throw myself into the freezers at Safeway. I hate it when people tell me I can’t do something. It really, really pisses me off. Just the other night, I had a nightmare where people wouldn’t believe me when I said aliens were slowly taking over the world and brainwashing people (yeah, I have weird nightmares, okay?). And, believe me when I say it wasn’t the aliens that frightened me, oh no. It was the fact that people thought I was stupid. I’ve always had that fear, especially since I know I’m a weird person, and I say weird things (constantly). But… I’m smart, okay? Geeze. I’m a friggin card-carrying member of Mensa! I solve logic puzzles for fun! I mean, wtf is wrong with me? *shrugs* Ok, I got a bit off-topic.

I hate me my cancer. That’s what I was getting at. It makes me feel weak and separated from my friends. I don’t even see my sister all that often, or even hear from her, because we’ve both been sick lately. We’ve just not been able to connect. (She had her gallbladder removed a few weeks back, and even if the doctors insist on that being a week recovery, it’s not. They’re liars.) Couple that with our busy schedules… it’s amazing that I see her even once a month, even though we live in the same, small town.

The only people I see on a regular basis are my students, a few acquaintances in my classes, and my roommate. He takes care of me – my Caregiver, even though he hates the term – and insists “just anyone” would do what he does…even if we both know that’s not true.

Bleh, I feel gross. It’s a quarter after three in the morning, and I’ve yet to sleep tonight, even though I’m physically and mentally exhausted. My chemo keeps me awake, but I’m not allowed to take sleeping pills (something about thinning my blood… I dunno, I have a tendency to ignore my onc because I think he’s a dumbass and I frankly just don’t care). At least I don’t have crap to do on fridays, save for a geology lab from 4-5 pm, and my office hours from 5-6 (very poorly chosen, but hey, what can I do? I got the short straw.)

I DO want to say that I appreciate the Twisters on Twitter. They’re my little online family. I’ve never met any of them, but I can tell them anything, and they support me 120%. We’re all cancer survivors, and in 140 characters, spread love, hope, and wellness to each other. My town is too small to have a cancer support group for people my age, but with Twitter, I have access to hundreds of ‘survivors’, and it is better than any support group I can think of. So, *muah* to the Twisterhood! I love you all!

And with that, I’m either going to go to sleep, or play Scribblenauts on my DSi. Nighty night!

Relapse.

You know those days, when you just want to crawl back into bed but can’t because of “obligations”. When I heard I had a relapse a few weeks ago, I thought, “Hey, this’ll be cake. I’ve kicked cancer once, I can kick it twice.” I don’t know why it’s so hard this time. I mean, I don’t even feel that gross from the chemo… it’s nothing I can’t handle. Then why am I so upset?

Someone called me a Cancer Survivor the other day, at the hospital. I nearly punched the unsuspecting person in the face. I felt like I was being patronized, like an eight year old being taught how to read, but has known how to since she was three. Makes me think back to my “Voices of Survivors” written word that I wrote, but has sat in my inbox with edits for about a month. For those of you who don’t know the project that Lynn Lane is the creator and producer of, then shame! Voices of Survivors is a short documentary filmed by Lynn, and it’s from the mouths of actual cancer “survivors” defining what they think is a “survivor”. (This is why I’m using a copious amounts of quotes, because there isn’t one definition of survivor – it’s different for everyone.) There is also a section for written statements, ranging from 400-2000 words on the subject. Mine is a bit long, at 1600ish words, but it sure as hell gets my point across.

Anyways, back to the person. They didn’t know I was upset, but I did hold myself back from a verbal and physical abuse. I just smiled, said thank you for the kind words, and went off on my way. I thought that, by having a relapse during the school year, then more people would be involved and then I’d have some sort of “cancer experience” that I missed out on the first time. How stupid does that sound? I can’t believe I’m actually typing it, let alone thinking it. I talked about this in my Livestrong video, about feeling alone and physically being alone, and of how much it sucked. But now that more people know and are getting involved, I almost wish it was the summer again, and that people weren’t around at all. Apparently there is no pleasing me.

(Forgive me, I’m just kind of typing what I think, and I know it’s disjointed… welcome to the world of how I think.) Last night I was so upset that I couldn’t sleep for hours, and my roommate took pity on me and sat up with me for a bit. I feel like my faith is being ripped from me, like having cancer once wasn’t enough, so our vengeful God has given it to me again. I’m like a child who’s gotten in trouble twice for the same thing, but still doesn’t know what she’s done. It’s not fair! *stomps* Yes, it’s my own version of a digital temper-tantrum, but God DAMMIT I fucking deserve it this once, don’t I? I’m tired of being everyone’s dumping ground for their own problems. What about MY problems, people? Does cancer look easy to you, like I’m coasting the fuck through it, so hey, why not we tell Kristin all these problems we’re having because she has her shit together. Well, I don’t. I have no idea what I’m doing. In relation to my cancer, I do, simply because I’ve been here before, but for fuck’s sake, I do have my own problems I have to work through. I don’t give a flying fuck what your boyfriend said to you last week that made you feel fat and unloved. I’m dying. Let me have my pity party for once! Let me cry and break things and wail about how life isn’t fair, BECAUSE IT ISN’T. When you’ve got cancer too, please, come join my pity party and then unload on me with your problems, because at least then we’ll have something in common. But until then, GO AWAY. Take your stupid problems with you, and unload them on someone else.

/steps off tantrum box/

Apparently I really needed that. I mean, I had the tantrum in real life too, but I feel a bit better. /end pity party. I’m still not fixing your problems for you, so if you have one, run the other direction before I squeeze your brains out your nostrils. I fucking hate cancer. It has absolutely ruined my life. RUINED. I should have graduated by now, and have a fucking job, but nooooo, I’ve been put back TWO BLOODY YEARS in school, with no end in sight. I’m not made of money, Cancer. I have to still pay out of state tuition (that’s another rant for another day), plus my insurance company keeps denying claims and raising my rate. Now that I’ll be 26 in November, my rate goes up to the next level anyways (the 26-35 level or something), plus the special “Cancer Tax” that most health insurance companies add.

Fuck you, cancer. I so totally hate you. If you were a person, I’d swear you off as a mortal enemy, and I’d put out a hit on you. *growls*

Cancer…dammit.

Apparently I am a rather unlucky person. My onc told me after my PET scan that things were less than jolly, and that he wanted to start chemo again. He didn’t say I was no longer in remission, nor did he say the other ‘r’ word (relapse), but I think he didn’t want to hurt my feelings.

People tell me to take charge of my disease, to learn everything I can. Well, I didn’t last time I had it, so why should I this time around? I don’t give a flying f what kind of chemo I’m going to get, or what my schedule will be. I’ll show up and trust them to do the job they’re paid for. Of course, I will do the least amount of what is expected for me, as will my onc. He is NOT allowed to try and snipe the crap out of my cancer. If he gives me a lower amount of chemo or whatever for a longer time, I’d rather have that than be strapped to a hospital bed for a shorter amount of time.

I mean, we still haven’t come up with a schedule yet. Who knows. Maybe I can get a second opinion.

Fuck my life.

Guys, shut your ears!

This is a girl-problem oriented post, so guys, unless you want to read about womanly troubles, go to another page!

Ok, with that out of the way, I haven’t had my period in over a year. Chemotherapy cured me of the need, along with other normally-functioning processes. (end sarcasm.) I think tonight I started my period again, after I had lost hope of it ever coming back. I am desperate to have children – being Catholic and family-centered – so what was I supposed to think when I stopped menstruating all together?  I was absolutely heart broken.  My parents adopted me as an infant, and that has driven my need to have my own children; maybe because my mother could not. But tonight… I wasn’t totally sure, and I’m still not sure, but it’s looking good.

In a few months, between summer research and school in the fall, I was going to make an appointment to see if I was sterile. I don’t know what that would involve (probably an outpatient procedure with a scope), and I’m not at a time in my life where I could have kids, but being 25 and without hope is such a desolate place for one to be.

Close friends promised to pray for healing, for the ability for me to carry a child, and even though I know the idea of prayer is uncomfortable for some, it was a comfort to me knowing they cared.  I don’t know if my prayers, and the prayers of others, have been answered; it’s a long way off.  I could just be spotting (it is REALLY light), but the feeling is… familliar. I had almost forgotten what it was like to have cramps, to bleed, to feel six degrees of gross, but the feeling now is welcomed (believe it or not!).  So many friends said that I was lucky to be menopausal at my age; not having to deal with all the stresses, the fear of ‘accidental’ pregnancy (if I were having sex, then sure, but it does not apply).  I hated feeling broken, like a part of my womanhood had been snatched by the Chemo.  I already felt disgusting from the effects of the Cancer, and to top it off, I had this to worry about in the back of my mind.  “Oh, it’ll come back,” the oncs had said.  They were male – they didn’t understand the carnal need to reproduce, to carry their own children.

If it really is what I think it is, then this is a very exciting evening indeed. Tonight, I rejoin the female sex.