You Deserve To Have Me Count Against Your Dropout Rate

When I dropped out of High school I was months away from 18. So that still requires a legal gaurdian to sign you out. My father went with me that day. My Mom being a highschool teacher doesn’t have as flexible hours as my father.

When we got there they took us into the principals office. Where all of a sudden a realize I’ve been bombarded by an entire education team. The Superintendent, Prinicipal, both Vice Principals, counselors, teachers, school board reps… it was a circus all lined up in a horseshoe of overbearing male posturing. I waited to see who they had assigned to be ring leader.

Of course, the nice Principal and very nice vice Principal who had both known me since I was little had been given tthe job to do most of the speaking. I wonder how they were convinced it was right to treat me the way that followed? They tried reasoning and twisting and political speak.They all started chiming in as my father and I defended our points valiantly, though depressing that we had to fight to begin with. I was raised by a politician and I understood their bullshit wording and the reasons behind the frantic fae smiles. They didn’t think I’d done my research. Sorry folks, there’s a reason your losing one of the smartest kids in your school. Cause they wouldn’t find a way within NCLB to get my credits to work.

Yet still had the gall to try to convince me to “Withdraw with the intent to homeschool.” Which isn’t the same thing as dropping out of the system. The difference being I don’t count in their state report card as in their drop out rates.

Oh no sirs! We kept trying to explain, not that we got to talk much. Which is saying  a lot coming from a professional talker. Finally they did something that still baffles me and I am not sure is legal or forgivable.

They removed my Father from the room to talk to me alone. I am VERY very lucky I don’t get intimidated. Cause they then tried to convince me it was my parents making me do it. I flipped out on them. I’ve made all the big choices in my life since I was old enough for my parents to explain things and for me to do my own research and understand it.

How dare they minimize me that way, I was not someone to be “handled.” I refused to speak with them farther until they brought my Dad back in the room. But first I chastised them looking them each in the face, verbally reminding them of the promises, the contracts they’d signed agreeing to all of this. They had broken every promise toward my education they made when I first started High school.

Then I went silent and waited.

They started up again and I got mean. I flipped out. I heard later that the entire school’s front office heard me (I don’t have a quiet voice, it projects naturally, and I was furious at that point) knock them all down a peg. Ending with the fact that this was my decision. “Hand me the papers to sign and bring my father in so he can sign his half as well. Because I absolutely will count against your drop out rate. Because I DID the work. I did more than your students who are about to walk, but you won’t let me from a technicality that you aren’t willing to help us find a way around. Bad form. You’re educators. Not the people who derail those who want an education. When dealing with a student who has the system setup against them it’s important to have their back and find the loopholes and back doors in the system to help those students be the success stories they should. I don’t mean cheating, I’m talking about finding a way for them to have an equal chance. But you all, everyone of you, failed with me. So more than anyone I know, you deserve to have my number count against you on that dropout rate!”

They brought my father back in.

A few of them had tears in their eyes, all of them were apologizing.

All of them deserved to feel that way. They deserved to not get to cushion their emotions behind a desk. To recognize that if at any point one of them had tried to help figure out the new system when it came to me, we wouldn’t be there.

But we were and I dropped out. That was 12yrs ago

When the Results Aren’t Good

I’ve been playing phone tag with the OB’s office all day. They usually just leave a message. This time her message was to call back every time. I signed something at this particular office saying they could tell my info to me in a voice mail. They normally do! Telling me “it’s a little abnormal we want to see you again,” or “everything’s great, have any questions call,” whatever. But this time it was just back and forth. Come on guys, can you be more obvious?! If you are willing to leave a message telling me I have abnormal results then I’m going to ASSUME this particular situation is worse!
Well I got the call. Turns out the weird suspicions I’ve been having were right. I’m premenopausal. I’m 28 yrs old! It’s from the adrenal function issues I’ve had from long-term steroid use. They’re putting me on meds, oh but don’t worry, it’s all very normal (sure normal in women in their 30s or 40s to need this or just ME apparently) Blah Blah Blah she explains… All of these months of trying and I haven’t even been ovulating. None of it mattered. It made me cry. It really isn’t that bad. many women go through mild fertility assistance. But it just felt like one more thing my health was trying to take away from me.

I’ve always known I’d be a great mother. No matter how sick I get, I can take care of a kid. But now I might not have that option? For real?! That seems so surreal. But I guess the good thing is it’s still a might. We have a number of options left, starting with the Clomid I start in November!

It can be difficult to establish in my own head how I feel when I get bad news to do with my health anymore. I feel as though part of this comes from every few months learning something else was wrong with me for most of my life. Maybe I learned to just not cope? Perhaps I cope so well it flows over me? I think it is the case really. I go through all of the stages of coping so rapidly that most people don’t notice I had a problem to begin with.

**This does NOT extend to any other area of my life**

Instead this is why when I do encounter something that I can’t just let flow through me and go with it… I don’t know what to do. I shut down. I could be pouring myself into preparing for the eventual baby (which I have been doing for months), but I have such a hard time mustering the hope right now. I spent a lot of spoons/energy on hope these last number of months. I’ll figure out my way to cope with this, until I do, I remind myself I just haven’t found the next great thing yet.

Sleeping Beauty Syndrome

Did I really just sleep 46hrs? That’s pretty extreme. I mean I rolled over, I got up to pee, I think people said hello to me… but I slept through everything.

I woke up at 3:00am with a million text and Twitter notifications and a rumbling stomach. I also now vaguely remember demanding Gatorade water at points. (I like to water it down, too sweet) I got to make myself soup that I know my Mom made and left in the fridge. As I wander into the hall way and turn on lights I notice that, shit’s changed!?!

Weirdest thing about sleeping this long? I went to sleep with the place a wreak. Don’t get me wrong it’s less of a wreak than it has been. I have been working on it, really I have! Also my amazing parents keep showing up and cleaning while I lie sick in bed. They tackled the kitchen the other day. It was sad on my part. This was stuff I know a typical adult my age can keep up with regularly. But it took the “cleaning fairies” showing up for my place to see the love I should be giving it. If only I knew how to conserve my spoons and spend them as soon as I get a few!

I have three different infections right now. Woot! That’s what I get for having fun for a weekend…

Medicaid- Alien Status

I’m currently listed as an ALIEN on my insurance causing me to not be able to pick a specific insurance plan… Aliens are only allowed emergency care they explained to me… So I can’t see any of my doctors, specialists, or get my meds, unless I want to pay out of pocket? I’ve always been a US citizen, how did this over site occur you ask? Well, apparently someone in the Co. Job & Family Services had to have checked an incorrect box… yep. That’s the reason I’ve been having insurance issues since March, someone checked a wrong box. It took until JULY for me to find someone who actually knew what was wrong with my insurance. Feel my bitterness radiate.

My Stagnate Life, Continues On

I honestly can’t remember at this point how many infusions I’ve had. But then again, there’s no guarantee I can name what day it is today either.

I am starting to get sick of feeling like every step forward I trip six steps back. How do other people keep their heads above the water when their stressors are too much? I mean, my health has to equate to other people’s stressors in some way?

Turning Into a Reptile

Painful Chemo Rash. Won't stop peeling.

Painful Chemo Rash. Won’t stop peeling.

I think I’m finally metamorphisizing into a reptile. (yes I know I made up that word, but it totally works) I have a horrendously magnificent rash. My entire body itches and burns. My face is well beyond excruciating. If I don’t get some super awesome X-man power from this I am thinking that perhaps this wasn’t worth it! The rash is in my scalp, around my eyes, in my ears, even in the cracks between my toes! This photo shows the rash beginning to fade forming a peeling. Once it peels completely it hardens then peels again!

This rash is what lead to my treatment plan, including the doctor, changing completely.

My Brain’s a Goldfish In a Bowl

The goldfish swims around the bowl in circles. There’s an iHome on the desk the goldfish passes with every sweep. Wooh! iHome! *Goldfish is shocked* Swims around again passing the iHome; Wooh! iHome! *Goldfish is totally shocked by this new item in it’s view.

No matter what, by the time the goldfish gets around the bowl, it’s already forgotten about the iHome. This is my brain on Chemo.

Lost: Sense of Taste–If Found, Please Return

So I lost my sense of taste.

In a really weird way at that. Like my cousin explained it, my taste buds are like volume dials. My salt volume has been turned up to a 10 where as all the other flavor volumes have been turned down to a 3.

At some point between my 2nd and 3rd Infusions I started to lose my taste. I didn’t notice what was going on until after it had fully hit me symptom-wise. I blamed it on the fast-food restaurant not mixing their pop right. When I made dinner, it was that I didn’t put in enough salt. Chili, the chips were just stale.

But I knew for certain, and had no way to deny it, one morning brushing my teeth: With each swoosh of water as I rinsed my mouth, it felt like I was gargling the ocean. … I couldn’t make myself swallow. (Yeah, yeah, that’s what she said.) It was awful. I could convince myself for about three swallows that it was just a nasty pill, but when you want ice cold water to wash down the salty pill and instead you get salty water washing it down, it becomes an unhappy circle.

In the process of trying to figure out what I could eat and drink, I got so dehydrated that I had to get IV fluids at the hospital.

From what I’ve read, I don’t get my taste back until I am finished with chemo. Great.

Infusion #3- This Isn’t Fun Anymore

This isn’t fun anymore. Not that it was actually fun to begin with. But I have hit a point past my physical pain tolerance. Which is pretty hard to do when I’ve set my mind to it.

That sensation that alcohol causes burning into a cut to clean it? I like how that feels. The feeling that I have all over my body right now is burning and itching. It is so beyond my pain level I wish I could pass out so I don’t have to feel the pain anymore.

I had my third Infusion of Cytoxan on Monday. It seems to be an average thing for my functioning to start to come back around Thursday-Friday after the Infusion.

I keep wondering if this is really helping anything. My quality of life only seems to have gone down. What has it gone down for? Muy numbers on my blood work? But were those numbers really affecting my lifestyle on a level that the treatment itself is?

Chemo Brain- Anything like zombie’s… no?

Brains! It isn’t as cool as it sounds. Like any Romero movie at the end, there’s a sense of doubt. You don’t really know whether the characters survive when it comes down to it. Well, that’s how I feel about my brain right now. When the treatments over, in the end, will I get my brain back?

I thought I lost the previous part of me after my strokes. I know I got quite a lot of my brain capacity back, but I still struggle with certain aspects. I still deal with long-term memory loss, confusion, mixing up words, vertigo, etc. But the scale that my confusion has reached with chemo brain has essentially immobilized me intellectually. I need so badly to learn, I want so badly to learn. I’m always curious I love finding out new things and asking questions. Chemo brain doesn’t let me make the connections. My fiancée and I were trying to watch a movie last week.  We re-watched the first part of the movie every day for four days.  because every day when we sat back down to watch the rest of the movie I couldn’t remember what we had already watched.  So we had to watch it again. Which is really not cool. And after a while I lost interest in trying to figure out what the movie was about. I didn’t really care to know what happened because I didn’t really understand what had already happened. I didn’t understand the context. I get confused constantly now some will explain something to me and I will totally not understand it the way they meant it. Simple instructions have become a nightmare. Having simple anymore. Granted, initially I did do my own research on this particular symptom. I was sleeping constantly, exhausted, not really following things that I read well. But I complained,  a lot. My parents did the research on my various complaints. They came to me saying “hey! We think this might be what’s going on.” They were right. I did the reading myself and all of the symptoms lined up. I wasn’t going to worry about it until I’ve spoken with one of the specialists that didn’t really seem worth freaking out until I knew it was actually going on. I mentioned it to the oncologist at my last appointment, I only see her once a month by the way. She told me that it couldn’t possibly be that symptom. Why couldn’t it be that symptom? Her argument, you can’t have this symptom this early in the treatment. Well, that doesn’t seem like a very good argument to me. Especially when we know that I always get symptoms and side effects that one in 100,000 people get from any given medication. My parents call me the canary in the coal mine. My sister were asked to even the smallest thing with the most extreme reaction possible. So why then could not possibly be chemo brain? Because my body wasn’t following the normal path of oncological treatment.

This doctor has no ability to think outside the box. If I’m not exhibiting classic signs or symptoms then the doctor doesn’t acknowledge the issue as being part of her area of treatment. Which is a real issue with my specific case. So I asked my neurologist. He said “Woah! Not sure what else it can be?”  and he wasn’t the only one. A number of my specialists at this point have said that the only possible side effect I could be exhibiting with the particular symptoms that I described would be chemo brain.

So how do I treat this? Is even possible to treat this side effect? Or is this just something I have to deal with until the chemo’s over? I had to withdraw from my J semester class. You can even watch a fluff film, why would I be able to do academic reading? I tried, I really really tried.  But between being awake at the weirdest hours, rereading paragraphs over and for again, and trying to figure out how to connect what I read with class content got ridiculous. It was kind of depressing for me to have to drop the class. I really thought this time that ideally make it through. Not to mention, I really liked the topic of the class.