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~

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Grateful 365 #27 – Hanging-in-There Hairs

Hair before

Since my diagnosis, my hair and I have been through a lot. I’ve been annoyed by it, missed it, hated it… Today however, I realized just how lucky I am to have what I have and am seriously impressed by the tenacity of my remaining strands!

Since the traumatic shower where I first experienced hair loss in a very big way, to the decision to be done with all my paranoia and grief and shave, I’ve kept a small patch bangs just for fun. (It would have been a mohawk if my initial alopecia hadn’t taken out clumps down the middle of my head! XD)

hair2

I’ve since been informed that it’s actually a punk style called the “Chelsea,” and I’ve come to really enjoy the lengthy patch of bangs at the front of my chromedome.

Sure, I’ve lost a few of those initial long hairs and the patch has shrunk a bit, but I can’t help but be amazed that over halfway through my chemo, these tough little strands that remain have hung tight and stayed with me! Don’t get me wrong about the chromedome either– I really enjoy being able to switch color and style on a whim with wigs and not having a fully follicled head is pretty much the pinnacle of simplicity and ease when it comes to daily upkeep! Still, it really is comforting to have something to sweep back and brush.hairpanel

I have no idea if I’ll be able to keep this patch through the course of my treatment, and if it goes, I’ll likely miss it, but I’ve already prepared for it.

In the meantime though, I like imagining that I’ll end treatment and be able to keep rocking my rebel punk ‘do as the rest of my scalp catches up!

So thank you, my little scalp soldiers! Hang in there and carry on!

 

~all the love~

Wig Accessory Essentials

So I’m in the process of compiling step by step photos for some of the cool things I’ve learned to do with my wigs, and am hoping to put up some DIY tutorials for fellow wig wearers out there.
In the meantime though, let’s make sure that you have everything you need.

Stylingpanel

Wigstand#1- Wig Stand.
Unless you are really limber and very patient, a wig stand is your best bet for getting some of the more complicated hair maneuvers right. All my wig stands are open plastic models, which can make getting a feel for how the head sits tough at times. Styrofoam head models are probably the easiest to style on as they fill the wig better and give benchmarks for how the wig will sit on the head.

#2- A Comb or Wig Brush
Combs are the easiest to find anywhere and don’t need any kind of specialization to work well and avoid damage to your wig.
If you have longer wigs or find yourself dealing with snags often, a wig brush may be the way to go. I know what you’re thinking, “can’t I just use a regular brush?” Well, sure you can, but keep in mind that brushes designed for natural hair usually have a level of pliability to their bristles. This softness can catch, stretch, mangle and break synthetic wig strands quite easily.
wig_brushWig brushes usually come equipped with sparse metal bristles– not the pinnacle of comfort on a scalp, but much less likely to damage your wig in the long run.
A wig brush usually won’t cost much more than a normal brush, but if for whatever reason you feel inclined to use a ‘normal’ brush on a synthetic wig, keep in mind that stiffer, sparser bristles are better and work gently with it.

#3- Wig Cap or Cushion Band
I put this on here only because I know that for some people it’s a must. Wig caps do a good job of dealing with keeping oil and sweat from your scalp off your wig, and can really help alleviate itching and discomfort if you are dealing with scalp sensitivity. wigcushionband
Personally? I tried some and really didn’t care for them. My favorite underwig accesory is The Cushion Band found here: http://www.headcovers.com/175/cushion-band-gel-headband-grips-wigs/ . I probably need to do a review of some sort on it because as my head started to get tender, it pretty much alleviated every complaint I could have had about wearing wigs.

wigpins#4- Bobby Pins, Barrettes, and Snap Clips
Bobby pins and snap clips are especially helpful for taming wayward strands or keeping a wig looking the same way you styled it all day long. Barrettes can do the same thing, but with flare!

#5- Claw/Jaw Clips and Hairbands
Whether combing, cleaning, or styling, wig generally become easier to work with when sectioned off. For ease and minimal chance ofd breakage, alligator clips are your best bet. For long lasting hold, use hairbands the same way you would with normal hair…just not too tight!

#6- Wig Sprays, Shampoos, and the Like
wigwash4Listen, there are a ton of products out there for wig wearers, and I’m sure that a lot of them are awesome and well worth it– especially if you’re sporting a hundred dollar or more ‘do!

For me though, I’ve found that I really only need a mild, no residue shampoo like Burt’s Baby Bee to keep everything nice and neat.

Bottom line is that you shouldn’t wind up spending more on upkeep than you did on the wig– do your research, price check, and always, always look for testimonials!

Well, that’s about it for today, but I should be returning with more articles on how to style and care for the hair you wear!

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….

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.