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)

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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~

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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

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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.

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

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….

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