Grateful #46 – Controlling Time

ImageI have wonderful news that deserves a post of it’s own…and it will have it. However, today I am grateful for time. You see, I am writing from the future…at least as far as this post is concerned. Those who are following the personal side of this website likely know that I have been battling cancer– Hodgkin’s Lymphoma to be exact– for the better part of a half a year.

Spoiler alert!!!! (I win!)

However, the journey has been far from boring and unfortunately some of the tolls it took were on my ambition, my inspiration, and my motivation. Although I knew that the end was in sight, that end often felt like a barren, endless tunnel that repeated itself into infinity.

I’d like to think it never stole my joy, because there were a myriad dazzling moments of relief, excitement, and revelry amidst the turmoil. Here, on the other side of it, I’m willing to admit that there definitely were some very dark moments too.

It wasn’t an easy time. …And despite my own best intentions, I fell into that hopeless, awful hole once or twice.

(I met Artax there… poor Artax. I knew him well.)

In my defense, I’m not a horse. I had a lot of things to hate.  A lot of things I’m glad I’m rid of. A lot of things I pray I’ll never encounter or deal with again. I have more things to be grateful for than ever.

Maybe I shouldn’t have hated those times. Maybe I shouldn’t have feared them…but I did. Maybe that’s what dragged me down.

However, here? Now? I’m glad for everything.

Glad it’s over.

Glad I’m done.

Glad I have time.

I’m not giving this project up. Grateful 365 is important to me. It means that this year was more than the worst bits. I’m behind, but not quitting. Not the project. Not writing. Not the site. Not my ambitions.

Oddly enough, the project represents endurance to me. It’s a year long marathon of celebration via keyboard.

I just realize it will take awhile to catch up.

Apologies to those looking for anime or comics or cons…but for the next several days (and possibly weeks), a lot of that work will be waylaid in order to catch up on gratitudes.

Why?

Yes, cons and costumes bring more views and follows.

Yes, games and reviews are topics that reach a broader audience.

Yes, eventually this gratitude blog and my professional blog will be two separate entities.

HOWEVER– this year has opened my eyes to things I’ve never seen.

I’ve seen grace, beauty, kindness, love, friendship, wholeness, wellness, faith, joy, camaraderie, and LIFE in frames I’d never known before.

I’ve also experienced loneliness, grief, anxiety, depression, isolation, futility, devastation and anger such as I’ve never, EVER known.

Today though? Today I’m glad I’m here. Today I’m glad to know I’ll be here tomorrow…and the next day…and hopefully the day after that. Not only will I have them, but I will have them as a healthy individual.

There will be time for all of it. For gratitudes and conventions and anime and video games and cats and costumes.

I’m glad I have time.

Time enough to make good on everything I appreciate.

Time to love and live and share more.

Time enough to fill your feed with things I think are worth noticing, loving, and lauding in your life…

…Because we only get one.

Sometimes it takes a hard look into the shadows to make us appreciate all the good things that shine so brightly.

I’m glad for every single pain I suffered…because it makes every smile that much brighter. Every laugh that much lighter. Every morning that much more amazing.

We live in this construct of “time”. I’m grateful for every single moment of it that has passed and hasn’t passed yet. I’m glad I have a chance to catch up and backlog over a month’s worth of gratitudes.

I’m glad for every single person who takes the time to read them.

Thank you.

~all the love~

Advertisements

No Time for Paranoia. AKA! One Less Thing to Worry About.

It’s funny how quickly things move sometimes. I fell asleep the other night, too exhausted to finish the small article I was writing on superstition and paranoia.

You see, I’d been having nightmares. Nightmares about my hair falling out. My teeth falling out. That kind of thing.

I’d started finding hair on my pillow in the morning. My head felt like it was itchying. I was getting paranoid.

I developed some rituals. 5 strokes of the hairbrush and straight into a pony tail for the rest of the day,. No touching the hair before I went to bed. No showers after the second chemo.

Basically, don’t look at the hair. Don’t think about the hair. Don’t touch the hair.

ESPECIALLY don’t touch the hair.

That’s what I was writring about. Maybe in more detail.

The night after neulasta was AWFUL. I had some oxy/acetominaphin to help get me through it though, so after an hour or so, it became tolerable and I was able to get some on/off sleep in so long as my head wasn’t involved. (And yes, that is another article because I feel it’s important. Neulasta is NO JOKE.)

Halloween is one of my favorite holidays. I love dressing up. I love spooky stuff. I wanted to participate. I planned on taking the max dose of oxy for the celebration. Dress up. Have fun. …A shower was needed.

I will summerize the shower: traumatic shower is traumatic.Image

That dream where you run your fingers through your hair and it comes out in clumps? And doesn’t stop? THAT.

I got so overwhelmed that through the tears, I started hanging it up on the towel rack. What else could I do? It wouldn’t stop!!

It was so much like my nightmares that I have expected my grit teeth to fall out of my head too! Maybe my arms would melt away and fall off next!!

Before I continue, I’ll tangent with a short story. I gave my hair an ultimatum. We could live together if it thinned. We could live together for a long time. I might get it cut a bit shorter, I might wear it up a lot more, but we’d deal. HOWEVER. If it clumped and came out? Done deal. It was getting shaved. I knew I couldn’t deal with it. Too much. Much too much.

So yeah, I got over the shock. I got over the horror. I got annoyed. Stupid fucking hair!!! It had ONE JOB, dammit!!! ONE!!

Cool thing though, the chemo left patterns. I saw two tulips and later on a heart. Maybe even the word “hi” if I looked hard enough. It was going to be okay. The hair stuff? If anything, it just showed that the chemo was doing it’s thing. Hunting shit down. Getting cancer dead.ImageImage

DSC_0091Image

I could dig it. I could deal with it. I don’t make idle threats, so at least I knew that I wouldn’t have to deal with the awful hair on my pillow much longer.

I’m blessed with wonderful friends. My housemate has worries of her own in the cancer department that make this lymphoma of mine look like a cupcake stand. She’s also lost her mother to cancer. There are all sorts of reasons that helping me with my hair issues probably made her uncomfortable or potentially brought back memories. Still, she’s the best make-you-bald barber I’ll ever had. Through the process we smiled and laughed…she made me forget everything I was worried about or afraid of.

I can’t even express my gratitude for her in general, let alone for her help with a difficult task. I really am SO blessed.

ImageImage

So now I have a new haircut…and one less trouble. :)

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.

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.