Nights like these… (What is Neulasta Pain Like?)

Ow. God, please make it stop. Ow…Fuck.

That’s my existence right now. No. Wait it’s not. Dullness has come and the agony throbs rather than stabs. I’m squinting at the screen.

What is “mild to moderate bone pain?” I want to tell you, because the drug company doesn’t…and nothing you will read will tell you like someone in it’s throes can tell you.

Neulasta…the night after.

Swells of pain that wash over me, climax like an ice pick through my flesh and to my bone…only to fade into dull, hot, sweaty agony. It buzzes under my skin. Everything is under pressure. Everything stings and burns and hums and refuses to let me sleep. I clench my fists and my fingers tingle uncomfortably. I curl my legs and my stomach heaves and rises and churns as though hoping against hope I might be able to just expel these sensations through my lips and be done.

I lose time. I lose thought. Words pass in and out. In and out. In…

I don’t know if I sleep. I don’t know the day or time. Sometimes I barely know my name, but am left only with feverish whispers praying and pleading for mercy. For sleep. For anything other than what is.

Videos play in the background. I catch fragments. I feel like I’m coming in later and later. Maybe I am sleeping, but rested is the last thing I feel.

There is no comfortable position. There is no relief. Movement burns like alcohol in an open wound then tingles and then aches. Stillness throbs with every heartbeat and burns beneath the nerves. Life is beyond uncomfortable. Existence is agony. Breathing is something I wish I could stop doing…it makes me aware of my ribs and back and hips and hands and legs and feet and oh dear God, dear God!!

My head spins. The bed is moving. I’m moving. My head is swimming.

I’m nauseated, but am terrified of all the movement retching brings.

I clench my eyes shut and urge time to pass. Will it with every fiber of my being. Sleep. SLEEP. Let this pass. Please God.  I pray. I pray so hard I almost believe my pain an offering.

I wait for the medication. I wait for the dulling. It’s too late for numbness, I know that much. But dulling. Just a little. Just that sharp, bleeding edge in my legs and hip.  Just the glass shards between my joints and around my bones.  Dull it, take it so I can have words or thought again. Please God. Please Jesus. Please…

Please. Please.

I see shapes when my eyes are closed…the outlines of my heartbeat and the silhouettes of jagged, subterranean nerves on fire. Every now and again, I feel like there’s no way my nerves can take any more…surely they’ll die out and fall silent. Surely they’ll kill themselves. Surely this is the limit of what a human can endure….

The dullness comes. Movements happen in slow motion but everything rings with a memory of pain. I regard it warily but refuse to look at it directly. I close my mind to it. I hide behind the pill in my bloodstream and say my thank yous for this reprieve. The pain is still there, under the surface…but I can contain it. I can hold it. I can move and think and work around it.

Everything seems distant and far away. The keyboard seems unreal. I type these words with caution, afraid that the monster beneath my skin might sense my thoughts and reappear to ravage my poor body again. I shroud myself in prayer. I turn the worship music high and hang my head and grip my crucifix as though fighting vampires.

Please…keep it at bay long enough for me to sleep. Keep it away….

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Overthinking Nonsense (Post Chemo 2)

I’m progressively ambivalent toward my own attitude… Am I still in denial? Stubborn? I don’t know…

Some nights, like tonight, I feel this desperate urge to call someone over and just hug onto them and cry. Vent about how much chemo sucks and how much I hate feeling like shit and how much more I hate knowing that I’m going to feel like shit and how much it hurts to just exist some nights… Sob and cry and make a scene and have them say all those sweet placating words I already know myself…

And I think that last bit is exactly why I don’t… In the end, what is that other than selfish? “Hey! I feel awful! Join me! Oh, what’s that? You want to help me and seeing me like this makes you feel badly too? Too bad! There’s nothing you can do but sit here and be miserable with me and say words that both of us know really don’t change or fix anything…”

Yeah, that’s an awful thing to do to a person… and for what purpose? Making certain sure they know that chemo isn’t actually a cavalcade of fun and excitement? (I think that secret’s out.) Drag the mood down in order to reach conclusions I already know? (Oh. I need treatment to get better? I couldn’t possibly have thought of that myself! Thanks for spending a miserable few hours with me!)

At this point, most of my friends would likely remind me that I would absolutely hate it if I knew they were feeling badly and they kept it to themselves for similar reasons…and it’s true. I’d be absolutely livid…

I’d tell them that that’s part of being a good friend and that helping to shoulder the misery is the only thing I’d be able to do for them…I might even say that it was selfish to block everyone out because we want to help and giving us nothing is only making us feel worse and more helpless.

I really hate feeling helpless…I really would hate it if roles were reversed and my friends didn’t tell me.

I’ve always been good at double standards though, and writing is the one thing that’s always helped me sort my shit out.
…and the more I dwell on or give into this ‘poor me’ bullshit, the more I’ll feel entitled to it.

I’m not. I’m not because I have too much to be grateful for. I have a curable disease. I live in a place where I can get treatment. I can work. I can get financial assistance from a number of groups and have people to help me navigate all of that. I’m young. I’ve got a body that can handle treatment. I’ve got a mind and faith and friends and so much support that it often leaves me breathless…

All that is without venturing down the thought process of all those people who have it worse. IIA is nothing. Hodgkin’s is nothing. Worse case scenario, I have to endure this for a while longer…and then I’ll be cured. Done. It’s over. I’ve won.

Not everyone is so lucky. Not everyone is certain they’ll win.

I always tell my students that it’s alright to be afraid and I’ll admit now that I am. I am afraid. I’m starting to hate the anticipation of chemo and (more so) neulasta more than the actual feeling shitty part.

However, the full speech I give is, “It’s okay to be afraid, but we can’t let our fear be bigger or stronger than we are. We can’t let our fear stop us from doing what we need to do.”

I may not take all of my own advice, but I’ll listen to me this once. Just like my children who stand with their toes at the edge of the pool, lip trembling and knuckles white, what I fear can’t hurt me. Maybe the sensations that follow will be new, maybe even uncomfortable, but in the end we’ll be okay. Just like those children, too much time spent crying and moaning and being told that my reactions are warranted and acceptable will only keep me from dealing with it and doing what I need to do.

So internet, I’m glad we had this talk. :) I’ll be back later with updates on all the stuff I’m grateful for rather than moaning.

Cadavre Exquis Part 1

Beneath the shadow of an old, weather-tarnished bridge lurked a troll of the most unusual sort. Neither portly or bulkily muscled, the mud caked rags it used as its disguise hung large and loose over the lithe, thin lines of a definedly feminine form. Her dark hair hung damp over her collar in a matted tangle of braids and beads, her face an inky hue even without help from the shadow of her modest cowl. Her back pressed hard against the pillar of the overhang she lurked below, her breath catching as the slight crunch of leaves broke the silence of the night.

It was hard to slow her breathing after such a long run, but she had managed. Survival had taught her well; afterall, a passing grade was why she was still alive. Long cool threads of air flowed past her lips and into her weary lungs as silently as she could pull them and adrenaline alone provided enough control to still her fatigued muscles. Calloused fingers knotted her dripping cargo to her belt without a sound. The reverberations of the road above her shook the pillar she leaned against before her persuers were within ear shot. Her long ebony lashes closed against their mates, hiding the glossy, cloud like surfaces of her eyes from view. Swathing her in completely in the pitch of the shadows beneath the overhang.

The brigade above her was small, perhaps only fifteen men strong. White stallions and dapples whinied and brayed as their gilded hooves echoed bell-like against the ancient metal that comprised one of the two only routes out of the city. Routes closed to all who feared the law and its swift, merciless hand.

“Sir-” A canine muzzle protruded from under the soldier’s glistening helm as he addressed his superior, nose twitching against the acrid winds the infected planes beyond the city brought. “-if we’ve not seen them by now, isn’t it possible they’re still within the city limits?”

The answer was returned in a frustrated grunt, and the large, ornate gauntlets that betrayed the captain’s status wound tightly around the reigns of his steed. “That would make them bold indeed…as well as incredibly foolish.” Beneath the rim of his own helmet, a sapphiric stare hardened and trained on the wolfman beside him. “Are you implying my brother was cut down by a fool, Lieutenant Terax?”

Terax looked away with a swallow of concession. The thick pads of his fingertips brushed comfortingly against his steed’s neck, his own umber fur nearly blending with the mane of the great beast below him as the creature trotted its own uncertainties against the patterned stone beneath its hooves. The horses were spooked. For good reason. If only the less attuned men in their brigade could smell the death and decay like he could. If they had but seen what lay beyond their perfect, walled great-village. They hadn’t though. His commander had. It was why he respected him enough to even consider venturing so far outside their immediate domain. “Of course not, but there’s no scent trail…no reason to lead so many out of the city with the plague running rampant beyond our-“

“We’re going.” The captain was a human, certainly, but he had never sounded more bestial. “You may come and lend your nose and ears or you may stay and I’ll have you tried later.” It hung in the air with as harsh and final a tone as it was meant to.

The Lieutenant’s furred brows knit hard beneath the silver overhang of his helmet’s visor, heart sinking slightly. It wasn’t unlike the captain to be headstrong, but his judgement was clouded. Understandably so. “Matthais…” Perhaps best not to be so familiar given the younger man’s mood. “Captain Bergus…there are other ways. I could fetch the hawks, or the wolves-“

“Enough! We’re losing time already! Come or be left behind, Terax-” The captain’s steed whinnied as he spurred it on, pulling ahead of the others and waving them to follow. “Onward! Forward! Seek out this wretch and end it! For the glory of ur king! For the honor of our fallen!!”

Beneath the bridge, the hooded woman held her breath again, head turning to let one ear face upward as she listened. Already her own nose wrinkled with the pungent odor of the lycan above her…and she knew well the tenor of those kind’s voices. Still, as much as she loathed them…he could be a threat if he followed his hunch. Go. Go, you fools! 

The wolven lieutenant’s chest heaved with indecision as he watched the others flow out around him into the dim unknown of the plaguelands, his amber gaze saddening slightly. They had all lost tonight already… Was this really the only way Matthais could settle his mind? This…is not wise… There was no scent, no smell of blood or sweat… And there hadn’t been. Not after they’d left the gates of the citadel. The culprit was no fool, certainly. On that much he and his captain agreed at least. …Still only fools ventured out into the plains unprepared…

“Lieutenant Terax.”

The wolven man glanced up with a nervous snap of his jaws in time to see the tall, armored form of the captain framed by the branching metalwork of the bridge and the gray sky beyond him.

The captain tilted his helm up just enough to remove its shadows from his eyes. The blue orbs were not the usual steeled slate of obstinance of determination, but instead a haggard, tempestuous canvas of pain. “Wyland.” His words faded out as the wind blew an errant strand of gold across his face. His gaze wavered and then turned away. “Please. We…I’ll need your nose if we’re going to find them. We mustfind them. Gregori-“

The lieutenant flinched at the way his commander’s voice broke on his twin’s name. Gregori would have never asked this of either of them… That much he knew. Still, if Matthais needed him… “Say no more. I’m coming.”

The woman finally let her breath release as the sound of stameding hooves grew distant and the final click and clack of the lieutenant’s steed galloped off behind the rest. Good riddance… She thought with a curve of her berry colored lips. Her eyes remained closed as her hand checked the bulging, wet satchel at her side; she’d need it to collect her dues, afterall. With an unguarded exhale her work hardened fingertips reached for the nearest protrusion on the wall and felt for a hand hold.

It wasn’t a hard climb, really. All muscle and no substance…that was what the ancient baba of her village had called her as a child.

It worked for her well now. She spirited up the side of the bridge, lingering for a moment at the edge as she smelt, and felt, and listened for any additional visitors. None to be found. Perfect. Her tattered boots landed agily on the cobblestones, muddied, foul smelling cloak and mantel swirling around her form as a meandering breeze passed by as though following the soldiers who had just left.

She pulled her hood back to reveal her tangle of ebony hair and the pointed ears that protruded through it. With a small chuckle at her own good fortune, she opened her eyes again…the glistening surfaces beneath her lashes nothing but a cloudy gray expanse. Her face spoke of youth despite the mud and soot and sweat that layed caked across the smooth dark surface. From an inner pocket of her garment she pulled a sturdy looking cylinder of wood that expanded with a practiced flick of her wrist and locked into its much longer form. The end tapped against the ground as though searching for her pathway as her short, sleight body gathered its cape behind her to better accentuate her minute size. With a clearing of her throat, she ambled down the street with an enfeebled gait.

When her lips parted again, a melody flowed from them with a sweet, pure timbre…like honeysuckle curling into the night air. “Change~? Kind ladies~ Good sirs~ If this tune reaches you, I implore you hear my words~ Just a coin, perhaps two. Just a pence or pound. To help poor Alimina, the blind, song-spinning drow~” Her lilting voice echoed against the abandoned buildings for now, but soon it would mix with the cacophany of the inner city.

From there, it was a quick drop into the sewers to the assortments of scoundrels that called the old catacombs their homes.

One Week from Chemo 1 Update!

It’s a week and a day out from my first chemotherapy session and I’m finally feeling close to what “normal” usually is for me.
I’m back to eating my usual food, although I’m still taking cautionary anti-acids before every meal to prevent heart burn.
I made a full day of work on Sunday and a half day before that on Saturday. I’ve given my Wednesday classes away for now, which I feel is a good decision as it allows me time to reflect and get things done around the house.
I’m feeling well enough to start worrying about money now, but I’m reaching out to figure out just what I should worry about, if anything. I’m dreading mail from my insurance.

I’ll say now, a little more than a week out from it, that I underestimated chemo a tad. I thought it would hit hard and leave quickly, but the after effects were with me well into Friday afternoon.

I’m excited for this weekend though- a friend’s wedding and a chance to see many highschool companions (some of whom I haven’t seen in years!). How blessed am I that I get to go with my normalcy regained and all my hair still in place!
I’ll work Saturday, Sunday, and Monday (and honestly, I have never felt happier heading in to work!) and enjoy the hour after enjoying various Halloween gatherings and parties!

Tuesday I’ll go in for my second treatment with a list of questions and a much better idea of what to expect all around. I’d be lying if I said I wasn’t dreading it a little, but I do feel much more prepared and that gives me confidence.

Needless to say, I won’t be going to the anime convention next weekend like I had planned, but c’est la vie. With any luck, I’ll be able to work Saturday and Sunday and make up for some of my time lost to recovery!

So there’s an update, for what it’s worth… at the moment I think I’ll go enjoy everything to the utmost! :D

How is lymphoma like a latte?

As stated last post: to say I have “lymphoma” is not exact by any means.

coffeeI’ve come to discover that describing one’s “brand” of cancer shares a lot in common with ordering a drink at Starbucks– the titles are long, nearly guaranteed to be spoken in the wrong order, and mean very little to anyone other than you and your barista (oncologist).

Personally, I prefer a Classical Hodgkin’s Lymphoma, Nodular Sclerosing, Stage IIA… (Oh, and I’ll take it infradiaophragmatic with lymphadenopathy presenting in the illiac, inguinal, and inguinal-femoral regions, please. …also two packs of sugar and one cream.)

If that doesn’t make any sense to you, don’t worry: I’m still probably getting half the terminology wrong. Not because I’ve decided that Hodgkin’s the Raven Bearded has placed a high level curse on my loins and called it a day, but because I really HAVE tried to figure out this doctor speak and am currently struggling with forming complete sentences.

Take heart though! As it is with coffee, it is also with cancer– the jargon can be translated to common tongue with a little effort.

Let’s start from general and get specific:

Cancer*. When cells divide and multiply out of control, often growing and spreading within the body. Cancer forms tumors, but not all tumors are cancer.

LymphNode_HodgkinsLymphoma_NS_SyncytialVariant2Lymphoma. A blood cancer wherein white blood cells called lymphocytes divide faster than normal or live longer than normal eventually causing a tumor. A cancer affecting the lymphatic system.

Lymphatic System. A system of vessels and organs that deliver lymph, a colorless fluid containing white blood cells, throughout the body. Lymph must pass through glands called lymph nodes on the way back to the circulatory system to prevent the spread of infection and disease.

Lymph Nodes. Bean-looking glands found all over the body that are responsible for removing foreign substances from the blood. They are packed full of lymphocytes (B and T types) and swell when fighting infection or disease as additional immune system cells fill them.

Reed-Sternberg Cells. Only makes up 1-2 percent of a Hodgkin’s Disease tumor. They are mutated B lymphocytes which are much larger than normal B lymphocytes. Although they can be multinucleated, they often have a single nucleus surrounded by cytoplasm and then enclosed by a defined cell membrane. This subtype is known as a lacunar cell.

Hodgkin’s Lymphoma. type of lymphoma characterized by an orderly spread of disease from one lymph node group to another, the development of systemic symptoms with advanced disease, and the presence of Reed-Sternberg cells inside the lymphadenopathy.

Nodular Sclerosing. One of four main subtypes of Hodgkin’s Lymphoma and the most common in developed countries. The lymphoma takes the form of large tumor nodules with lacunar Reed-Sternberg cells present.

(*This is super generalized and could be more accurate. If you want to read about neoplasms, malignancies, and the like, please consult your doctor. I am NOT an expert and am learning as I go.)

There’s more, of course, to the equation. Stuff like positioning and staging and the like…but there are plenty of websites that explain it better than I can at the moment and while this list of definitions seemed like a brilliant idea the night I came up with it, I’m finding my own ignorance tedious now.

…so I think I’ll move on and return to it later.

Hi. My Name is Remy and I Have Cancer.

One thing that a cancer diagnosis is really good at is stealing your motivation.
It’s scary.
It’s unknown.
It’s isolating.
It fills your head with a billion and two possibilities and manages to ensure that none of them are good.
It steals your sleep.
It takes everything pleasant about your normal days and paints them black and white and awful.
It grows mundane worries into towering monsters.
It hates distractions.
It hates being ignored.
It refuses to be denied.

…And this comes from someone who, up until recently, was so in touch with denial-
*wait for it*
– she was nearly an Egyptian citizen.
*ba-dum-psh!*

Seriously though? Jokes aside? Cancer is just as scary as 9 out of 10 movie monsters you see in theatres…and that goes for EVERYBODY around it. It scares the host, it scares their family, their friends…

It’s the boogieman, plain and simple. It doesn’t matter if he’s in the closet or under your bed or in the attic or a million miles away in outer space… Once you hear from an expert that the boogieman is hunting YOU or someone you love, it’s hard to think about much else.

639px-Bluestone_the_Great_unmaskedGood news though!
Waiting is one of the hardest part and waiting ends.
The boogeyman is a liar and wears a rubber mask.
Simon and Garfunkel were right; no man is an island.
…and motivation is a hard beast to kill indeed.

 

I guess at this point, it behooves me to introduce myself before I lose you in another convoluted analogy.

Hi~! ^-^ /130501-025043
My nom de plume is Remy and I love to write, play video games, and pay the bills by teaching swim lessons.
Lately, I’ve been fortunate enough to land a position reporting on anime conventions for SpaceGypsies.com. For the first time ever, I’ve been able to attend some of my favorite events as “press”!
It’s a step closer to my dream of finally becoming a “writer”– someone with the ability to capture other people’s imaginations with the product of their own.
I’m a linguaphile, can be incredibly silly, and, despite my love of dark concepts and humor, generally have a pretty sunny outlook. (At least I like to think so!)
I have great faith, a wonderful family, rewarding work, amazing friends, and two pets that mewl and came with a box for poo.
I also happen to have recently been diagnosed with cancer.

I just got through my first session of ABVD chemotherapy and it’s only now, on day 4 of treatment, that I have the motivation and ability to begin this journal.

Why?

It’s mostly selfish.
Writing is a coping mechanism for me, and I am still scared as hell.
The author is never the victim…
(…except in Stranger than Fiction and Misery…and ….sort…of in Secret Window, Secret Garden? Actually King tends to make authors the antagonists, but I digress. Another topic for another time.)
…and thinking through a keyboard puts me in a different state of mind.

However, as green as I am to all of this, and selfish reasons aside- I would feel better if these words helped.
If they help someone understand what a loved one is going through.
If they help someone approach treatment with a better idea of what to expect.
If my ridiculousness can help produce a smile in a dark time.
I have already found SO much comfort in the experience and knowledge of others myself, and can only offer my best as I’m still a newbie myself.
I’m no doctor. I’m no example. I’m no worst case or best case or expert or veteran. All I can promise is honesty and an effort to check my sources when source checking is involved.

I’m just me, wannabe writer Remyelle, and I have cancer–lymphoma to be exact.

Actually, to say  “lymphoma” is not exact by any means, but we can get to that in a minute.

Not Exactly How I Planned to Start This

I’ve been planning to do a lot of things for a very long time.

I’ve been planning to create the epic fantasy series I’ve had in my head since I was small.

I’ve been planning to learn how to play the ukelele and the guitar and maybe a few extra instruments as time allowed.

I’ve been planning to brush up on my Japanese and then learn more. Maybe even try for some semblance of fluency.

I’ve been planning to read more.

Learn more.

Go out more with my friends.

Do more at work.

Report more often for the webzine I’m fortunate enough to write for.

Try making articles for other ‘zines too.

I’ve been planning to get my name out there…by any means possible.

…I’ve been planning a wordpress of my own for awhile, but I never seemed to find the ‘right time’.

Funny how it’s never the “right time“, isn’t it?

Not “ha-ha” funny, but enough to make a girl smirk at herself.

Well…it’s still not the right time. Not at all. It’s the wrong time.

Everything.

Is.

Wrong.

My headspace is all messed up. I keep vacillating between hero and victim and protagonist and auxiliary character and all the spaces in between. I’m the luckiest vagabond pauper queen victim warrior in all of how-many-ever worlds there might be. I’m at my best, worst, and most indifferent…and I’ve never cared more about leaving a mark.

I’m not writing this blog because I need something to do–
I have a job and a lot going on.

I’m not writing this blog because I finally realized that you can’t win if you don’t play–
I’m still terrified of failure and rejection and procrastinate and make excuses to deal with that.

I’m not writing this blog to build myself up or to tear myself down–
I’m too ambivalent about everything and anything to get beyond “pleased to exist”, honestly.

Most of all, I’m NOT writing this blog because I think I won’t get another chance–
Ambivalent, indifferent, or otherwise…I am still far too much of a narcissist to seriously imagine my own death before I’ve made something worthwhile to leave behind. Plus, I’m in no danger.

I’m writing this blog because I found out I have cancer…and that frightened me, consumed me, demotivated me. It spiritually, mentally, and physically messed with me to the point that the only reaction I see as reasonable now is to accept it as a challenge.

And Win.

I don’t take challenges often because I don’t take them lightly. I take them personally, spitefully, and with something to prove….and so I’m going to do my best to take everything that would hold me back or scare me off and craft it into something I can at least look at and say “Hey, I tried there. I didn’t give up or lose ground.”

Best case scenario? I make something like art or manage to help someone in a similar situation in some small way.

Trying is more than I’ve done in awhile. I’m rusty. I’m embarrassed it took some stupid clusters of “Cells Gone Wild” to get my attention. It’s not how I planned to start my wordpress…but here it is.

It may not be “the right time,” but it is the time.

Dr. Hodgkinstein? Chemo?

Bring It

…Bring it.