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.