When I'm pure of meds

I will stand tall, back straight,
walk with a beat.

I will laugh sunshine,
grow my hair long,
shave my legs.

I will cook seasonal meals,
take a hose to the back porch,
scour the carpets,
hang laundry in the wind.

I will sweat before dawn,
win a front yard race,
do a handstand push up.

I will dance with my daughter,
sing out loud,
cartwheel.
and I will play, oh how I'll play.

Relaxed

I have been broken so many times this year,
Broken,
Broken down,
And each time I have crumbled.
What do I have to learn!
I'll do it!
Anything, just get me through this!
And I have released my arms,
Laid back and taken it.
Floating,
Half submerged,
Relaxed.

Brilliant

A flock of crows, millions wide, and a brilliant sunset
On big sky, greet me as I arrive home.
Daughter safely tucked away for the weekend.
Tomorrow sure to be hell.
Only 9 more to go.

Moderate to even

Morning bright. Partly sunny plans sorted laundry, holiday debris, jumbled priorities. Afternoon brought fog, fake smiles. Evening clearing nicely with apple pie. Warm predictions for tomorrow.

Holiday on meds (final)

I had planned to tell long blurry stories of my medicated Christmas, fog lights, highlights, favorite occurrences like seeing my long lost uncle (also with Hep C), my youngest cousin (all grown up), and my grandpa, the most wonderful, gentle, safest man I've ever known, who says this may be his last Christmas (but he didn't say it to me). I soaked him in as best I could. We held hands, touched arms, smiled. He looked through me, past my words of doing ok, held my gaze, and told me to go home, that I was tired and needed to rest. It's his Cajun talent he says.

But long stories will just have to wait, my heavy head still throbs. Woke at 3:33 thinking someone had hit me solid with a baseball bat (how rude). Had to watch the numbers for a moment, play them around, 3 threes, nine... before I could stubble for the vicodine. Took forever to help. May be The side-effect-hormonal-headache, but it's passing already, so maybe not. yada yada blah blah waa.

Overall the holiday was good, even on meds. We made it through, daughter had fun and I didn't cry in front of the family. So there. Total success. I'll never forget it though, will compare every future one to this.

Holiday on meds (2)

I made it through, back, out, in, home, head, oh, ouch, ee, aw, oo.

Holiday on meds (1)

Loaded the dishwasher. Piece by piece. Like a puzzle. Simple. Relaxing. Easier than talking, watching, listening. Like a tangled fire, people are, staccato, flickering complicated rhythms, sucking oxygen from the air. Must shield my eyes, my chest. Must lean on furniture, door ways, counter tops.

2 hours we were there, maybe three, Aunt visiting, so many people, wonderful gifts, good people. I sure love my parents. Just hard to maneuver, exhaustion, hunching over, contorted. Whew, I kept saying, whew...

Shook my confidence for tomorrow. Every thing's up in the air... lighter that way. We'll see. We'll see. My little holiday on meds.

38 weeks of post-injection practice:

Watching ants,
And a gnat crawl across my toe.
Can't feel a thing.
What else can't I feel,
Bird flutter,
Sounds,
Insect buzz.
The sun on my...
Train of thought takes me away.
Back again.
House noises behind me.
Dog in the yard.
Sun on my head, neck, face, ear...
Spider, ants, gnat,
Still can't feel a thing.
I see it moving,
Can't feel it.

Done

with purchase
with crowds
with traffic
with waste
with second guesses
with selections
with family logistics
with the 38th shot

Sparkle

Last night, cozying up to read with my daughter, a smile erupted. Just as I felt it, my daughter leaped back, inhaled, and said breathlessly "You smiled!" She squeezed her bear tight, held my gaze, and said how much she loved my smile, how pretty I was... Whoa... how long has it been? Oh, I'm so so sorry... STOP! I have a smile to finish! For her! And I felt it again, pull at my cheeks, lift my ears, touch my eyes, sparkle. Yes, I remember this. Holding it real, honest, pure... for seconds longer, then let it fade. That was all I had in me, much as I could do before I began to fake it, eyes dulling with fatigue. Wow, it felt good. My daughter grinned deep and danced around. I logged a tracer on that bad boy, will get to it again real soon, I promise. Only ten more weeks, baby.

Stop gap measures

Escape plans,
Lookout points.

I've now incorporated many along the way, planned it out. Imagined. Moved from worse case scenarios, to feeling with delicate fingertips, back along the path, for the line, the bump, the point of no return. So I can recognize it, spot it, before it passes me by.

My goal is no longer to get everyone their present.
My goal is to make it through Christmas unharmed
AND
To save enough energy to ensure my daughter has a good time.

This may mean I don't do anything beyond celebrating Christmas morning at home, then sending hubby and daughter off to family. I could not go to Pensacola on Christmas evening and miss the two day visit. I could not go to Panama City on Christmas day to visit grandparents. I could not even visit with my parents and Aunt on Christmas eve. I could pull the plug at any stop, head home, hunker down, breathe. Though I want to do all those things, good food, reconnect, I'm fine with not, for this year, and that feels so good...

Gauging potential

7:48 am,
Up having coffee alone.
Hubby's new sick.
Daughter's still sick.
My head is slowly killing me.
Yesterday's errands left me unfulfilled, unsatisfied, unfinished,
Though I sure want to be.
Gifts ordered weeks ago, still haven't arrived.
3 more people still incomplete.
Things could fall apart.
I could still unravel.
Cancel everything,
Visits,
Travel,
Gift giving,
Cheer,
Laughter.
Simply pull myself out.
Ding... Done...
At least I have that.
My exit strategy.
My new found friend.
A gift from treatment, good for all year it seems.
Technique enforced by pain and terror,
Reinforced by public breakdowns, crying children, tired faces.
Yep.
It could happen.
I feel the impact already.
Got to gauge the potential,
Time the jump.
That's how I work now,
With one foot over the edge,
So the fall will be less noticeable,
To limit the stumbling, scraping, clawing that hurts so much,
Better just to jump.
I'll be fine,
Just let me go.

One step from mental

I want to write, but I am tired... too tired to think... day of errands did me in... bits of flashing blackness failed to fazed me... heavy limbs dragged me down... trudge trudge plod plod... so many things I want to say, not enough momentum to press the keys any furthe

One little year

Thinking back a year ago... I was struggling to find the right doctor, wrestling with the decision of treatment, having completed the liver biopsy and all the right tests to prove my virus. Never thinking it would be like this, 9 months under my belt and a whole world shift.

So much in one little year. I had no idea.

Arspentoffle

Errglogpoopypoo blasfatblegsmerplaw pleeg plaw. Smaaping gloip blegeserplop pow. Arr arr paw. Arrr arrrrr paawww...

Swwweerrrrr...poooooou

Took a long deep breath this evening. Hoping to escape for a little while. Everyone's gotta do it. Good for you. Sure I've got two problems going on in my eyes. One not so big. The swirly blinking blackness is just a migraine without the pain. I can deal with that. Hope it goes away after treatment. The other deserves a pause. A long deep breath to cool the nerves. Swwweerrrrrrr... poooooou. Another white dot, actually two, have appeared on the back of my left eye. Is it the precursor of retinal lift off? Is it no big deal, most likely to go away after treatment, long before any detachment even considers being formed? More appointments scheduled. They're going to hold my hand through the rest of treatment. Actually gave me the pause-look and asked the question, how much longer do you have go? Three months I stammered, well actually one week less than three months, I couldn't remember the numbers. How many weeks left? I'm not stopping now. Fluttery flight inhales. No, he says, lets go for it. Something about weighing the odds when I'm this close. Yeah. I've only got three more months, well actually one week less than three months. Dude. It's only one eye, what can happen in three months time? Swwweerrrrr.....pooooooooou. I love my eyes.

Dropped and switched

Called the eye doc this morning. They went all flippy flip about the flashing blackness. Tried to put off the appointment till Monday. Hubby had a cow. Now all things dropped and switched. Will arrive at 3:45 this afternoon for dilation and inspection. Totally inconvenient for everyone. I'm sure it's nothing.

Day in the life of:

or things that conspired against me
or rather... signs I failed to heed (whichever)

Brief fever woke my daughter in the night, deep cough, swollen glands followed.
Plans for home school play day pending (cookies already prepared, secret santa gift wrapped and ready, monthly parent meeting scheduled, many errands hover with urgency).
my gut quivers
Daughter pleas to attend, dances dances to prove her prowess, blink bam we're packing to go.
Packed car malfunctions, 30 min switch-a-roo, lunch delayed.
gut shimmies
First errand nearly ends in public mayhem, ambulance, panic - flickering lights erase my peripheral, spin my consciousness, and send my daughter and me to the floor gracefully pretending to search the bottom shelves for the perfect size, once out of the store all things normal (call the doc? naw).
my gut barely recovers
Begins to rain.
Second errand only half completed.
Continues to rain.
Daughter complains of stomach ache.
gut sinks to new levels of contempt
Third errand smooth enough.
Raining harder, play plans cancelled, tears flow.
uncle
Fourth errand dumped.
sweet relief of failure
Lunch finally had.
Final errand (med pick up) expensive but pain free.
home, home, home...
Home.
Should never have left...

Blink and bam

My 6 yo is working me over. She talks a double speak 3 times faster than I can blink. Then circles back with the object in hand, a visual aid to seal the deal. I'm nodding yes before I know why. No, wait... I shake my headache. She smiles and tells me she loves me. Pause. She nods to reinforce my first answer, smiles, 'Love you mommy'. Is that? What is that... dripping from her words. 'Poor mommy, I can't wait till you’re done with treatment'. Hummm, why does caution keep stirring...

She's working me. Tripping me up. Coaxing me along. Human nature? Ah, so cunning. My little civil disobedient needs to learn some finesse though, sounds more like a slick jabbity jaw politician, than a noble eco-revolutionary...

Shit, she just did it again... now she's getting mac and cheese for dinner. Not that that's a bad thing, it's just blink and bam she's handing me the box and I'm nodding nodding nodding like a like a like a....

EEEeeewwwoooooo

Adjusting the pace, the bar, the expectations, down a notch.

Got a little ahead of myself, dancy dancy during the last two weeks. A little less meds and I'm all animated, energized, expansive. My chemical line, I suppose. Cross back to full dose, add that last little 45mg, and I'm dead in the water, flat on my back, down on my luck, all shaky and pissed off. Lots of eyebrow raising and wind watching going on today, barely keeping my voice steady. Kicking my butt and hopefully the virus'. I guess that's the point. All right.

So I'm cranking it down, setting my sites on a lower horizon, wide screen view without all those pesky mountain tops. More whale like, scrappy dog, whatever...

Holy crap

Holy crap, yesterday really sucked. Thought at one point these meds might do me in. Much better today. Three more months, huh?

Sweet call

Sweet call from my daughter,
Distracts me for only a moment.
My legs still shake.
My tears still swell.
She is so wonderful.
Happy with Gram and Papa,
Plans of excitement unfold,
Tales of kittens told,
Call me in 1 and 1/2 hours, she says.
OK.
I'll watch the clock from my bed,
Lost in my head.
I never want to be sick again,
I never want to be sick again.

45 mg of extra Devil

Movement spikes,
This demon in my soul,
Entangles,
Snares,
Rips it down, off its ledge,
Bones ache, tears rain, face contorts,
Body heaves, legs tremble,
Waves upon waves, crash and tumble,
Till I stop, pause, breathe, giggle,
At the absurdity of this pain,
Raise my eyebrows,
Laugh out loud, quietly, more tears,
Lay still and take it.

Inevitable up

Everything’s up... but I knew that already, call from the doc only confirmed the inevitable full dose this evening... the official 36, only 3 more months to go... then...

Old friend

Smooth day, clearheaded, bits of strength surged my legs forward, tall, bright, chatty, upright, forthcoming, inquisitive, observant, easy. Blood test completed, results tomorrow, mixed feelings.

Reason for the season

forgot my morning meds (just took them)... at least the kitchen's clean...

OD on the RBC

Yikes! Has nobody even bothered to wipe down this sink in the last 9 months? And what's with the counter tops? And the dust... I didn't know there could be so much dust, I've woken up to a blizzard, so much clutter flying around I can't see my fingers, aaaahhhhhhwaittnnnooo! I'm all wired, anxious, teeth grinding fury, growling under my breath, ggrrraaaaarrrgggr... What's with this? Have I overdosed on the red blood cell count? System overload, dormant circuits suddenly amped to life without mercy, zzziiitttttsssszzzzz... Whoa.... chill.... ride it out baby, channel what you can, no yelling... nooooooo yelling, mime it baby, mime it, there you go... Flip this turtle back over, that's right... just a few more days.... till the full dose on Friday... then you'll be missing this fun... really, yeah... that's right... there you go..... yeah....... thanks... we're cool......... just let me clean this toilet, walls, floors, give me the gloves! giiiivvvveeeee meeeee thhhheeee ggglllloooovvveeesssss!!!!!

Swanky

Went to a swanky holiday work party with my hubby last night. I looked good, felt good, ate good, smiled a lot, talked well with strangers (smarty environmental scientist types even); a few extra red blood cells really make all the difference. Nice. Spent most of the evening in observation mode, watching three amazing powerhouse career women laugh together with the ease of accomplishment, sharp, collected, brilliant... my old scene it felt like... that could have been me, could be me... naw... I held my own though, proudly representing the educated, experienced, powerhouse homeschool mom, housewife of the new millennium... yeah baby... fresh take on an old career, success in a swanky house coat.. yeah... the new swank, sometimes rank, because showers are optional, just how I like it. I miss the new clothes of a second income though, and cool shoes. I have a weakness for shoes (and bowls, ahhh bowls). Had to pilfer the closet deep to find an acceptable costume, dust off the ol' boots. Even tried on some fancy make-up, thankfully changed my mind in time and went simple. What an evening, different part of the world, glad to be home.

Hep C eyes all glittered in gold

Once you run a marathon,
You will always be a marathoner.
Once you are the President,
You will always be a President.
Once you have Hep C,
You will always be a hepper.
That's what I hope anyway.
I like these Hep C eyes.
Without the pain and misery of treatment (or the virus),
I think they'll look quite nice,
Easy,
Experienced.
Just apply my newly formed priorities, keen observations, humble learnings, mortal strengths...
To a higher red blood cell count, pain free days, rebuilt muscles, adventurous spirit...
And Yeeooowww, that's one hot chick working the room!
Oh yeah, I'm keeping these eyes (as delusional as they may be), they're all glittered in gold!

Rose hips - deleted

I worked on this poem for over 3 hours... then on and off again some more... tweak, tweak, scratch, scratch, scratch, and it still sucked, over and over, with each revision. I had other things to do. I was wasting my precious day. Yet I didn't want to put it down, always so close... but still crap. I posted it anyway, but its weight sucked worse than its words... so I deleted it. Whew... finally able to let it go...

Why I say I'm OK when you see me at the grocery store:

Because sometimes I am.
But when I'm not, and I know you can tell, I still say I'm OK... or hanging in there... or surviving, because that's what I'm telling myself, to get through the store, to make it standing up, to protect my daughter. That's when my plate is full and I'm near the line, and if I say it, let it slip, that I'm about to fall, its weight will quadruple and shine a reflection so horrific I may not be able to carry it home.
Best to save it for later, for pen and paper, safe from public scenes, shocked faces, sad little girls, do-gooders. It's not dishonesty, lack of trust, or even a desire for privacy; it's survival.
Best to smile at me with quiet eyes
and let me go.

Eh... not so bad

"The Headache" hardly deserved capitalization. Today's not pleasant, but not horrible either, decent coasting material.

Counter forces

First thought this morning was 'Hey, it's Friday, hopeful 2nd 3/4 dose day', shiny horizon, glitter glitter. Then... wait... my head, whoa... is it that time of month already? What? No, I won't believe it. This is nothing... I've got plans today, things to do, preparations to make, driving... I'm supposed to drive today!

Hello, counter forces,
Keeping me on my toes, eh?
Well, all right...

Float like a butterfly,
Sting like a bee,
Bring it on baby,
Drop me to my knees.

I've got patience,
I've got courage,
I've got vicodin,
I've got pillows,
I've got this bed to keep me afloat,
I've got no way out, by choice,
and I'm not scared of you anymore! (scream mime scream)