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)

Walk, walk, walk...

I do a lot of walking away, legs carry me out at the first sign of sparks, acutely aware of the flames licking the back of my eyelids, dangerous smoke signals puff from my hair. I've seen the carnage from my toxic rage and it hurts worse than self control, so I walk away, breathing, silently talking myself down. I yi yi yi... look out the window, birds, wind, leaves....

Doesn't matter what ignites it, on these meds, it can be anything. Though spilled juice is always good for a quick exit, and marker on the table, and any statement that remotely pisses me off, and loud noises (like my favorite plates hitting together), and singing, even singing... The heat rushes, chest bursting, head flames, walk, walk, walk, walk, walk, fast, NOW!

Roll the neck, breathe deep, look out the window, make a face, let the stretch over power the heat, welcome the silent words, compose, compose, write and I write, silent salvation, to be safe... oh, to be safe.

More water please

Just a bit more water, some chili, a piece of pumpkin pie, more water... that was my problem, not enough water, and some pie, I needed more pie. Today: no plans on purpose, cool with the headache, all else is fine.

Unfortunate consequences

Desire has led me astray.
Wanting more, to do more.
Suddenly filled with devastating awareness of unfinished business.
Unfortunate consequences of just a little more juice,
On the brain, to cloud judgement,
A mirage of light dancing on the horizon,
Big plans reborn.
So pretty, so pretty, step, step, step, trip.
Ah, the line,
Moved, but not forgotten.
So tired, so tired.
Big plans dropped, released for another day, year.

3/4 dose

Things are going easy now,
That I've reset my stride,
Light on the throttle,
Heavy on the glide.

A little extra mojo,
Unsquashed by the meds,
Survives in my cheeks,
Lights up my dark head.

Easing to the left a bit,
Smooth on the right,
Slowly let my shoulders drop,
Poised for the flight.

Easy there, girl

Holy holy moly, holy holy moly,
holy holy moly I feel so good,
hop, skip, shuffle step, holy holy moly...

Wow big difference, fog has lifted, there's a tap in my toes.
Comon' boy, let's go play, do you want to go play?
3 frisbee throws...
ok... that's enough...
whoa there...
alright...

slow it down...

take it easy...

easy there, girl...

whoa... easy there...

you feel good,
not all better,
ok,
got it,
gonna go lay down,
we're cool...

(9:24am)

Transfixed

Caught a glimpse of myself in the mirror and had to stay awhile. My husband made a comment about it this morning, but I paid no mind through the fog. Yet now I'm transfixed. Shooting out in all directions, my hair, dried and brittle from medications, crazed punk stripes of skin showing through, wild. Clear expression of state within. Amazing. I touch it; wispy, transparent. I'll remember this look forever. A snap shot of presence. I'll keep it for a while, watch my shadow on the grass.

Ummm... well... no.

I don't feel any better. In fact I feel like crap. I'm sure I reduced the dose. Maybe if this fat hairy headache would move out of the way I could get a better view. Imagine what I'd feel like from a full syringe. Yeah that's it, I could feel worse, I can see that from here.

I'm sure it's just the accumulated 'thumping' from the last few days, festive festivities, swirling swirling, talk, talk, talk (mostly from others), as I slowly moved from one room to the other. I did pretty good though, proud of myself. The ever present feedback loop kept me in tight check, "nope, put that down, nope, sit down, nope, just smile..." I ate a lot of good food though, watched my daughter run wild with her cousins, watched my extended family consume amazing amounts of alcohol (they're such good catholics). No big family crisis this year though, probably for the best.

Now I'm home alone, just where I want to be; daughter safe at my parents, husband off to work. Maybe later I'll feel better... could be worse... right?

Travel time

hummm... packing bags for a Pensacola gathering... in-laws of all flavors, nieces, nephews, food, lots of food, celebrating Thanksgiving and my husband's 39th birthday. The low neutriphil count has begun to weigh heavy on my conscious (didn't take long, huh?). Little viruses won't likely touch me... but bacterial infections could be a problem, big problem. Cautious behavior will be packed along with extra panties, socks, courage. We'll be back by Saturday, hopeful Saturday, my Saturday of relief (?). Swinging by a thread, ahh ahhhah ahhah...

8 month check-up

Everything's holding steady at a reasonable low; except for my neutriphil count (part of the white blood cells) which has plummeted. So they are reducing my interferon to 135 mg (3/4 of a dose) for two weeks. They've had to do that for one week at a time, twice before. This time I guess it's extra low. I didn't write down the number so I've forgotten it, all I remember is the upwelling of pleasure, hope, ahhh...

Reduce my dose? OK!! For two weeks? OK!! My smile was uncontainable... I tried to act concerned, but honestly, I didn't care. The chance to feel better, even a little, was intoxicating. I could tell last time, really, my Saturday was quite pleasant, I remember... though when the dose was brought back up it knocked me down, hard, like a sack of bricks, oh it hurt (pain is relative). But that's OK, I'll deal with that later!

For now, I'm already feeling the effects (though the first shot's not till this Friday). It's the hint of happiness, relief, just a taste, that's carrying me. It's a double edge sword, a catch 22. You don't want the dose lowered if it means the virus survives. I know. I know. I know... AND at the same time, sweet hope of relief... ahhhh...

Why things just don't get done:

fatigue/weakness
constant brain fog
headaches, headaches
fast playing feedback loop
dizziness
periodic testy, angry, crabby, freak-o mama, volcanic possession
incessant 6 yo singing, in ces sant...

It now seems to take a minimum of two tries to get something done (that's a minimum... there appears to be no maximum), and I've got only one good try in me . Should have seen me hang curtains today... all day long, resting, then re-resting, streaming melodies by my side, measurements (?), they look screwy. Remember the brilliant idea to switch rooms, still not done, may take months... Oh well...

What has survived

My heart and my soul,
I cannot tell you in any other way,
Is open, open wider,
These choices I have made,
Right or wrong, circumstances,
What has survived,
Pieces that are whole.

Oh feedback loop

Oh feedback loop, Oh feedback loop,
Your gentle ways inspire me.
So transparent in the wind,
Tricky trap you lead me in,
Evil surging from within,
Loud and clear responsive friend.
The line it swings so silently,
As I fall so blindedly,
Slope I slip so suddenly,
Neck is snapped so violently.
Blows I never do repel,
Survive I must, a tale to tell,
Flow with trust deep in the swell,
Quickest path out of the hell.
Rising up within the ash,
Clear and bright new sunny path,
Shiny skin still raw from blast,
Certain now I am with task.
Walk I must on tinder feet,
Wounds I lick from my defeat,
Back in line I've come to meet,
A friend I found born from the heat.

*I sing this one like an opera star...

3 nights of house dreams:

Always lots of people arriving, socializing.
Start and finish in the living room; clear view of outside porch, pool, beach.
House is either Victorian wood frame, tall and eventually on fire,
Or made of glass, low, modern and full of water.
I'm inside, then out, then in...
Each time there is an 'after' story of what remains.
I am curious, patient, open.
Usually I wake before the object/subject is revealed.

This morning I stayed. The house was made of glass, sleek, clear. Viewing its history, flashes of flood unfold. Now, I am listening to unfamiliar guests hinting of a big man's death and of the little dog's survival. The pooch swam in circles, they say, patiently paddling for days, through these flooded rooms, floating debris and he survived. He's right here, look, small and scruffy. Shoulder injured from the constant exertion, but all fixed up now, healing nicely, they say.

He's beside me, looking out through the glass wall, silent eyes full of experience, calm, present.

29 minutes

1,2,3... eh...
slap, slap, slap, 1,2,3...
1,2,3...
pace around,
slap, slap, slap, 1,2,3... eh...
1,2,3...
pace around,
slap, slap, slap (rhythmic Christmas carols)
1,2,3... eh...
pace around,
slap, slap, slap, 1,2,3...
pace around (shirt pulled up, pants hanging low, shiny syringe in hand)
slap, slap, slap, 1,2,3... come on!
1,2,3...
pace around...

29 minutes to pierce my skin, by far the hardest yet... and once I finally plunged in, breath held, it didn't hurt at all.

My little elephant

My little elephant chatters non-stop,
By my side,
Closer, closer,
Songs sung,
Questions asked,
Stories told,
Over, over.

"Hey, you listening?"
Talking louder,
My ears,
My eyes,
My face made of plastic.
Shhh, little one,
My head.

Glimpses of the sky

The Whale is tired,
Heavy,
Carried by this current,
Coming up for air,
Catching glimpses of the sky,
Clear, blue, beautiful.

Crash wall

Breezy morning.
Talked into switching daughter and guest room - carried away by her enthusiasm, intoxicated by the chance to thin out her stuff.
Dragged shelves, mattresses, books, what?
10:45 am, end of peak.
Dragged some more - unsure of details: barely adequate behavior, one short blow up, the rest foggy.
2:36 pm, reached crash wall.
4:48 pm, still hurting real bad, slow mo.

Was it worth it, for the one bag of cleared junk, for the room 1/2 done, guest room furniture lining the hall, upheaval, disarray? Probably not, but I won't commit. That's just too harsh for me right now. I'm hurting, heavy, and my daughter wants to change it back. No go, I go. I'm one tiny step from the edge... yet I feel oddly secure... a tiny stone to cling to? A whale size vision? Just being cool with it... survival mode.

I am the Whale

The rune given last week,
On the day I would fail,
Spoke of joy, pleasure, harmony,
Where was that as I wailed.

Yet I pondered each day,
Sensing clarity out of reach,
Like a ghost in my peripheral,
Shrouded by disbelief.

The Whale I drew this week,
Words described me at length,
As the ocean's gentle mountain,
No sense of speed, only grace.

Yet I still didn't get it,
Till today when I stumbled,
On the obvious path,
Truth spoken not mumbled.

This veil was my 'lost self',
Held up as a mask,
Staccato ways of history,
Success from my past.

Time spent lamenting,
Over life’s lost direction,
Modeled shapes of victory,
Obscured my reflection.

Today I saw new self,
Moaning deep melodies,
Slow, strong, and graceful,
Immense possibilities.

The Whale I am soaring,
Warming my voice,
Pleasure I am feeling,
This is my choice.


Maybe a bit of foreshadowing with the choice of "Ample" as my pen name. As I am under 5'2" and tightly built.... humm.

Days moving quickly

Wednesday's reunion better than great. Played "on the hill" as queen and princess. Laughed at the dog and my little one's antics. Listened and looked with deep eyes of gratitude. Cards and pictures made professing our love. More than once happiness filled her eyes. I saw it. I was there.

Thursday, candy pops became rock stars. Alison Krauss was booed off the stage. Beatles came next, "John Lennon, coconut invented" sang Love, Love Me Do. Then John Prine for real, CD cranked loud, her and daddy danced in circles. I sat as long as I could. Staying present by cataloging their faces, smiles, movement. The volume pierced my ears, left quietly before I screamed. Crashed early and stayed up late, cuddled in bed, we're halfway through Harry Potter (#6), she suspects Malfoy, loves Harry.

Friday, after homeschooling and bonding on the sofa, we packed bags, discussed plans, and traveled off to my parents. She called at bed time, tearful and still safe. She's got weekend plans for the county fair. And playing with kittens. And she misses me. Says she can't stop saying it.... and she wants to stay longer on Sunday, not come home till after lunch. "Bye, I love you, bye, bye, I love you, see you on Sunday, bye, I love you, bye, bye..." Hanging up is hard for both of us.

My sweet little bear,
Let me smell your hair,
Keep away the fear,
Hold you forever near,
Your wings they keep growing,
Bright yellow, blue, unfolding,
I promise to help you fly,
One more moment by my side.

Today, the mac truck I injected last night bruises my bones. I'm thankful for the solitude. Will sit for hours watching the wind blow.

Come home, baby

Anticipating my daughter's return, waiting for the call announcing their departure. I'm nervous, too. Worried. Wanting to be all better, for her, to see me happy and playful. Excitement turning to stress. Expressions with hubby headed towards disaster this morning, both of us steering madly away before coming together, faintly hoping to help ourselves. Learned a little, enough for now. I'm making plans for the next few days, good food in the fridge, movies to watch. I hope to follow her around, listening, watching her beautiful form create, get muddy. That makes me smile. I'll hold onto that for awhile. Test my waters with a tentative toe. I do have a reprieve just a few days away. Her weekend with my parents will serve as another safety latch, escape route. Scratching at the 8 month post, soon only 4 more to go. We can do this, right? This isn't forever. I'll tie myself to life's momentum and ride this carnival ride till the end. I'm looking forward to her face, her voice. I want it all to be perfect and I'll settle for nice. Come home, baby.

And showers

They deserve to be in bold print, too. Major part of my survival. Not every day though. Most days it's just too much work, getting undressed, then redressed, just makes more laundry. But when it's right and I've got plenty of time, I'm in till the water runs out. Listening to the pipes whistle songs of bliss. Hot then hotter, burning my neck and behind my ears. Worries of waste flicker, I bargain for more, justifying this excess, just this last time, next time... Soon promises disappear and I'm there again, pain burning away, swirling at my feet, cleaning me of thought, forever.

As the water cools, I bid a quiet farewell, dry my swollen limbs, breathe the last steam. Happy I took the time today. It's all going to be ok.

My date with a Chuckey Monkey Milkshake

Eyes close,
Savoring last swallow,
Heavy in the back of the throat,
Euphoric.

Dancing on feet

Calls from my daughter, her voice is so sweet,
Tells long winded tales, while dancing on feet,
Voice squeals with excitement, intermixed with some doubt,
She wants to come home, my heart wants to shout.
Then off again, stories of forts built in ditches,
Swinging from vines, pretending they're witches.
I try to sound thrilled, fear sprinkles my mind.
A ditch? Were there cars? Danger to find?
Where were the parents, the Nana, assured,
to protect her, love her, keep her secured.
Cause she's not at my side and I miss her like crazy...

That's why I worry and listen so close,
For signs of real sadness, loss of last hope,
But she says, she's got big plans, with the cousins, more fun,
Yes, she misses me and No, she's not done,
And I learn a new lesson, of life's dual existence,
Both-and is best, why try to resist it,
Sick belly is worth it, when the cake tastes so good,
So I smile, safely knowing I still stand where I stood.
Yes, I am grateful, for this time to recoup,
Time with my husband, time to reboot.
Use it well, I will, no time be a wasting,
I plan to have no plans, till joy I be tasting.

Balloons on my back

"Balloons on my back, feet dragging the ground, head hanging low, just looking around, what kind of wonderful world is this.

Winds blowing south, cold from way up north, my balloons float along, dragging me forth, heading straight out to sea.

But the seas are so old, they're rough and they puff, great big clouds of cold rain, ice crystals and stuff, I am through, how is it true.

Woke up this morning, checked under the sheets, wanting to see, if they're dirty or neat, my feet, oh oh my feet."

*You gotta sing it...

Tornado

A tornado ripped through me, 12 hours last night.
It was ugly, horrific, didn't give it much fight,
Felt it turn inside out, course set for sure fail,
Blew up, then shut down, wailed, wailed, wailed, wailed, wailed, wailed.
"Oh why," you say, "Why, would such a dastardly thing,
Befall such a lovely, helpless, befuddled young queen."
Cause she's a monkey on meds, put her back on the shelf,
She's weary, broke hearted, she can't help her-herself.
My mind raced in circles, rhymes sped in my head,
No more, I cried blindly, finally sensing the dead
End course, I'd set up, for myself...

Too many people, were here in my home,
Laughter expected, and dinner to comb
Smooth perfect like the perfect wife, mother, and friend,
I had let myself drop, down the list, to the end,
Weekend reprieves, lost last, this, and future,
Guts spilled out of wounds, I'd failed sadly to suture.
Priorities, where was I?
Will I die?
If I won't?
Say I don't?
Do this,
Anymore...

The twister broke up, as my husband reached in,
Had an idea, this bright morning, see if I'd give it a spin,
Our daughter to travel, home with his dad,
Who's leaving this morning, this doesn't sound bad,
He'll return this next Wednesday, yes, that's five days away,
It's set he'd come back, with her Nana, she'd play,
And her cousins, her cousins, you know how they are,
She'd like it, will love it, Pensacola's not far.
We run it past the little one, she dives for the chance,
Tears fall tiny drops, just one second glance,
A party she'll miss, but she's not even sad,
She'll celebrate on another day, says her friend won't be mad.
She's right, and I know it, so I must let her go,
Off on this adventure, wild wings she will grow.
She's excited, relieved, says she'll miss me, I'm sure.
I wave and blow kisses, her care I defer.

Five days to rebuild, take it my friend,
Let lose of this struggle, know this treatment will end.
I'm off to sit with the dog, warm in the sun,
Will dream sweet fancy dreams, of her having fun.

Eyeball (eyeball, eyeball, eyeball)

Needless to say, I passed out around 7:30 last night. Zoom, zoom, zoom, crash. Dreamt of yellow leaves and men in dresses. Woke this morning to another good day. Hubby chauffeured us around this afternoon, dropping me by the eye doc's and standing in as super parent at the home school group. The appointment took an hour, routine checks for treatment patients led to photographs of a new "white dot" on the back of my left eyeball (eyeball... I love that word). Number codes for "long term medication" riddle my file. Back in two months to compare. I'm not worried. Don't have excess energy to waste on such vague threats. Everything is cool. It's pushing 7:30 once again and I'm crashing nicely.

Vroom vroom

Opened my eyes with caution this morning, first one, pause, then the other. All was clear. No headache deserving capitalization, ears clear of swooshing pulse, ice picks absent from eyes. Ahhh. Just the little aches and pains left, little in comparison, once again proving relativity.

The day after feels so nice, light, easy. I love the day after, before the contrast becomes to remote, body still in shock, tolerance still held high, tippy toes, arm stretched, fingers reaching up, up, up. Yeah, this day is good. Vacuumed the down stairs, dusted a little, laundry loads put through the cycles, now I'm off to the grocery store, gonna buy some goodies, challenge the fast old ladies to a race. Vroooom vroom.

Vicodin feast

The Headache woke me, around 2:36,
A.m. that is, body clinched in a fist,
I tossed around gently, fearing the beast,
Then I delicately rose for a vicodin feast,
Back to bed I hoped, would end this great torment,
One day it lasts long, 30 days it lays dormant,
Sun came soon enough, few hours I had slept,
On with this day, 21 hours left.

Something delicious

Thinking of celebratory Champagne has triggered nostalgics and concern. I can't quite remember my last drink, not because of high number rounds leading to lampshades, but because I didn't know it was to be my last. It must have been a beer though, as I'm sure we were in Arkansas (the first vacation) and that's all we had. It may have been on our 10th anniversary, that seems possible, but I'm not sure. A year ago, almost exactly.

I had been struggling against the Hep C news, dragging out my acceptance for three long weeks, still "allowing" myself "a" beer or glass of wine, every day or so; deep denial, fingernails clawing at the river bank. Then something switched during the night and I was done, the last had past. Haven't had a drop, splash, swizzle since. Haven't wanted one, not really.... well, I've tasted on a few very rare occasions (tempted by a good red wine), but the divine turns to poison in the back of my throat, anti-freeze is what it feels like; my liver cries out like a baby, it needs protection, love, gentle care, back you vicious beast!

So, I'm looking ahead, to the final day... the last injection followed by 6 days of last pills... how will I celebrate? I know I'll cry, but will I have a drink in my left hand? What kind? Will it still taste of poison? Suddenly I'm transported to the potential hangover... that scares me now, I'm done with headaches, pain. Way done. I don't ever want to be sick, even slightly! So will I have that one? Come on, I'm sure I will, but I'll go for quality, not quantity. Something delicious, fruity, robust... humm. Not Champagne, no.... I'll have to think on this one... or maybe I'll just dance around, all wild, crazed with relief, techno belly dancing... for hours... (don't need one for the other).

BOOM BOOM BOOM BOOM, BOOM BOOM BOOM BOOM...

Bubbles rising

"... the halfway mark is totally underrated. I could still see the start just before it, and once I passed it, I could already see the finish!" (The Mighty C).

"Yeah... that brilliant guy was right, but it's taken me more like 7 months, pushing 8. I've been blinded by the start day, like it was the sun, burning all other visions away. What was that week, yeah the 29th shot, only 19 more weeks left, yep, that's when the scale suddenly spun. I questioned the calendar, double checked the math, before I could dare open my eyes, and slowly the finish line came into view. Marvelous. Now I'm at 18 weeks left, but it doesn't feel as life altering, 19 has the power. Nineteen is my magic number. Amazed I am (Yoda voice), almost done she is, amazed she has made it so far, yes, hummm. "

........(bubbles rising from my head).......

- Conversations with myself, over and over, on hard days, like today.

Two great things, one tough day.

First and most importantly, it's my wedding anniversary! Eleven years! Long time to be married and yet we just seem to be getting the hang of it. Still discovering, finding our voices. We are at a really wonderful place; wanting more, fine tuning our talk, releasing self-inspired barriers, exposing our vulnerable underbelly. Ahh, that's so sweeeet.

So, to honor our life long choice, a new tradition has been inspired. From here on out, we will spend our Anniversary Day as the "perfect couple". Do as we would if we were blissfully happy - not that we are not, but the chores and daily responsibilities tend to cloud the picture a bit. So we'd strip those away, for one day, no expectations to maintain it.

Except for this year, on a post-injection Saturday I feel like crap. No snuggling going on here let me tell you. I'm achy, my ears hurt and I'm cold. The stairs must be taken with two extra long breaks, collapsing on furniture, beds and counter tops, whine, whine, whine, blah, blah, blah. So we celebrated last night mini-style. Went out for local quinine, ate too much fried fish, cheese grits, then traveled home to sleep. Had fun though, dreaming of next year, how great our lives are now, laughing with our daughter.

One other great thing happened today... dressed the babe up for her big spooky party. She looked more like a dead nun than a ghost though, maybe a ghost of some saint who liked to scare people. She looked hilarious. I laughed so hard I almost stopped breathing... almost ruined her fun. She didn't want to be funny! I struggled for composure and quickly recovered her confidence... a ghost, a very spooky ghost. She and my husband drove away excited and happy.

And I get to be home alone for the evening... hey, three great things! Wow, three reasons not to completely want to runaway from this day. Cool.

Violent tides

"Can I do this?"
Waking sun.
Important plans this afternoon, questioned, reconsidered.
"Can I do this?"
Family pushing,
Silent voice pulling back,
"Can I do this?"
Autopilot showers, dresses,
Steps fall heavy, body aches.
"Can I do this?"
Consequences pondered.
"I don't think I can do this,"
Pepper my inner debate.
Violent tides surge in both directions,
Weaken me further,
Clearing the way towards certainty.
"I can't do this."
Test the news softly against the backroom air,
We're not going, I whisper, cancelling plans?
Relief responds loudly, tipping the scale.
Daughter's disappointment hits back hard,
Quickly channeled by pretty promises,
Pumpkin carving brings her back.
Settles the air,
Eases my pain,
Home,
"I can do this."
Now far from the edge.

Face paint, cheap shit, and big bags of candy

Not sure what possessed me to leave my preserve oasis, drive down my mile long entrance road to the nearest pavement, travel 45 min through three small towns, and step foot in a Wal-mart Super Center... face paint, cheap shit, and big bags of candy, that's what did it to me. Halloween's on its way, time to suit up the babe and eat lots of refined sugar, food dye, and complicated chemicals, and sadly, out here, there is nowhere else to get it (shoulda coulda woulda done without, but I didn't).

I must say for me, the joy of making the costumes is a heavy handed motivator. Paper bags, duct tape, staples, spray paint, you name it... every year has been monumental in design and originality (if I do say so myself). And this year my daughter's going as a.... as a.... ghost.

Yep, that's right. Sign of the times... Hey, it was actually her idea first, though I did persuade her (on more than one occasion) of its fantastic qualities. So we're going to spruce up the white sheet look with a little face paint, let the whole kisser show through and have tons of fun. She's going to a home school party, run around in the dark with all her friends, hyper on the good stuff, looked after by my husband.

I'm not counting on my attendance, especially after today's 'super store' experience. Maddening I tell you, that place, all those people, pudgy, pasty, florescent lighting, extreme amounts of plastic junk, waste, heading straight for the nearest dump because it's just so cheap you can always buy some more! Not saying the home school group is anything like that, it's definitely not, but the party is on a post-injection Saturday and this super store extravaganza dipped down deep into shallow reserves. It's just not a good mix for me, not ever, but especially not right now, when I can't push the cart fast enough, can't think clear enough to remember what I came for (hey look at that, I could really use one of those), when the one damn bathroom is always at the other end of the freakin store and you know my daughter's got to poo, and when I just don't have any extra, any extra to spare on such wasted angst. Even now, this drains me just to think about it. My head hurts and I forgot to buy toothpaste.

Yuck. Cancel all these thoughts. Return to my haven, safe among the pines, wire grass and fall flowers, away from the bustle of over population. What time is it, 'Now'. Where am I, 'Here'. I'm so glad to be home.

Eh... not so great

Overdid it first thing (moving a couch, stupid story), shortness of breath, blah blah blah, never quite recovered.

Home school was tough, but very enlightening, very.

Broke up an afternoon fight between my scarf and purse strap, sun was shining, parking lot was full. Afterwards I laughed, it must have been hilarious to see from a distance. I'm smiling now, puffing out laughter just thinking about it. So that's been good.... other than that... Eh.

What a day

What a day. I kept it sloooww and easy, allowed myself to do the meditative mosey before I even had too, before it was survival. Moved from one place to the next, taking in the sights, feeling the green reflections of the tree tops.

Strolled to the wood pile today (about 300 yds), actually wanted to, the whole way. Even carried a small armload back, just a few pieces, easily brushed away the tiniest thought of carrying more. And I never once got near that line, the edge of function, painsville. Never once regretted the idea, never once considered the ramifications of calling for help, enjoyed every step, snail's pace, happy place.

Later as the temperature dropped, I walked again along side my daughter, baring witness to her inner sense of determination, ambition. Purple fleece pants, bare chested, dusty feet, 'Arr!' she yelled, dancing in the frozen breeze, toes tipping, arms jigging, eyes bright with rapture, 'it's warm, it's warm, really!' I smiled from my belly at the blur, swirling, swirling.

Inside, dinner was rescheduled to accommodate a snack party behind the couch. Long stories of social injustice and movie rating corruption from the mouth of babes tire my ears, but my eyes go on unblinking: she is so beautiful, center stage, full of light. I want to jump up, find a pen, capture all these moments, but not miss the next. This blip of concern doesn't move a muscle.

The evening has now rolled in without incident. I'm pleasantly tired, ready to sleep. What a day. I am not bothered in the least by it's departure, simply surrendering to it's return.

Play, smile

I'm feeling good today.... really good... strangely good... Is it the weather, cold, crisp and clear? Is it the good night's sleep, snuggling deep under the covers in the big family bed? Is it anything... I can repeat? Quick, wipe away these worries, no sense in spoiling the moment... for whatever reason, this morning feels new, fresh, hopeful, like maybe I can go for a walk, stroll around a bit, play, smile, laugh from the belly, see colors from a greater perspective... Ah, this is nice, so nice.

Inner beauty

Yesterday, I took the big hair chop off. It has been falling by the fistful since the early days of treatment, dry and brittle, exposing my tender scalp to the hot sun and frowned reflections. Found myself thinking far too much about the new look, decided to step in front of the bull and shave it all off. Gasp. A few second thoughts saved me from total disaster, but the effects are still dramatic enough.

'You've done this before', some of you may remind me, twice actually, years ago, 'so big deal'. Well... I thought this time was different. The last two were excessive attempts at a new beginning, final flailing at the bottom of a long rope, smacked of defeat. This time was supposed to be different. Simply ridding myself of a simple distraction. Simple, simple, that's all.

So... when I woke this morning to the shock of an exposed expression, ears... I realized: it's mostly all the same. Once again I was looking for hope, a forced spring, a prettier tomorrow. Yet, this time I think it worked. Sure... now I long for flowing tresses, thick and heavy, but it's better than stressing about the comb-over. It can only grow from here, only 19 more weeks of self injected hair loss. I can justify this one on and on if you like, and if I keep going I'll completely convince myself of deep inner beauty, a hip new sleek do, all the right moves...

For now I just need a neck tan, a relaxing day, and no worries, so I'm cool with it.

Spotty momentum

The sofa held me up for most of the morning, later on the bed, then the sofa again. In between I propped myself up using chairs, counter tops, spotty momentum. A foggy resemblance covered for me, facilitating home school spelling words and arithmetic. Afternoon games followed my placement, not my participation. A trip into town was cancelled, shutting down all extraneous movement, time to close shop, huddle close, breath slowly without worries, time schedules, stop lights, well intentioned strangers, noise.

Happy with that easy decision. Happy despite these lead filled limbs. Smiles shine easily from within this heavy head. Fatigue, weakness, not darkness.

Is this hemoglobin starvation, eroding away the final semblance of a typically good Thursday, or just something else that too shall pass? Either way this is nothing, bring it on. I can take this kind of performance failure. This part doesn't scare me anymore. I can look this in the face and say welcome, good to see you again (how long will you be visiting this time?).

Bring it on... I'll wait right here... for this to be over.

Ears beneath the surface

Long talk with my best friend.
Reaching deep into the chest cavity,
layers held up for inspection,
celebration.
Open exploration,
uncharted courses,
marking maps of progress.
Parallels surround us,
releasing caged moments for flight.
Surroundings clear of fear swirl swiftly between us.
Smiles abound,
hard to watch the clock.
Time running short,
children to gather,
afternoon to end.
Mud cakes remain,
dishes to collect,
evidence of the miracle shine on before me.
Five more minutes would not have been enough,
hours planned for later,
sometime soon.
Life is unpredictable.
We've plunged deep into the blue spring,
been lifted,
weightless,
will float on,
ears beneath the surface.

Adaptations of beauty

Today's suggestions, by my 6 yo daughter, to fit the mom-on-meds go lifestyle:

1. Lets play follow the leader, real slow, you can go first mommy.
2. Lets climb the tree fort and lay down.
3. Lets go outside and play, you can sit on the porch and watch me, I'll carry your water.
4. Lets just do 1/2 of school* today, then take a break, I don't want you to get too tired.
5. Can I water your plants?

*we home school

Fast old ladies

"Excuse me", said the nice old lady as she passes me by. More whiz past before I can reach the checkout station. They seem to be coming at me from all directions. I've got the slow mosey moves today, pushing my cart down the grocery aisle, slower and slower. My daughter tries to help, not tall enough to steer, just makes matters worse. I smile though, this is kind of funny (me on meds, t-shirt potential). The ladies smile too, happy to look good, healthy, fast. Glad I can help.

I heave myself behind the wheel, wondering if I can push the accelerator all the way home, wishing I could park in the kitchen to unload, thinking the dog sure needs that bath, knowing it's just not going to happen, looking forward to being a fast old lady.

Come sun rise

The med literature warns of chemical reactions, doom and gloom, psyche disturbance (hair loss). I had planned to be immune to such follies, forgetting for the moment I was human. Looking over my posts, I see cranial cave paintings. Up and down flow the strokes, following the salty tide. There is an ocean inside my body, weather systems full of acid rain build and disperse. I'm just trying to be cool with it.

Woke up this morning floating in the boat, unsure of the reasons, thankful for the surprise. Still feel the usual pain and fatigue (man, I'm tired), but the darkness has lifted. Smiles flicker from the inside out. Come sun rise.


"...a story is a letter the author writes to himself, to tell himself things he would be unable to discover otherwise." The Shadow of the Wind, by Carlos Ruiz Zafon.

Daydreaming of a cold crisp creek

I take another long deep breath and angle towards an eddy. This is a beautiful place. For all the stops and pullovers, the water's moving fast. I want proof I'm here and I see it all around me. Time stops still when momentum is felt. What a bizarre and beautiful place. I'll lay here awhile before slipping back into the cold crisp creek.

What a long strange trip it's been.
Floating, down this one-way stream,
Water, splashing blue and green,
Wonders, I have never seen,
My eyes drift towards the sky.
don di de don, don ditty don, don di de don, don ditty don

Dissection, delivery, and a long deep breath

I expose these stories purely for record, later to dissect, it's a bizarre world here, filtered by treatment, but certainly not to bring worry, especially about my daughter. I'm a fierce mama bear even on meds, prone to outburst of tears and tantrums. Sure I taste the venom, drops spill as pans crash, but she will always be protected. Still I do see sadness in her eyes and hear wishes that her mama could run, jump, laugh and sing, and speak sweetly, everyday like before. Five more months, she is counting the days, knows spring will bring relief, "Poor mama, poor mama."

Nurse delivered a ten pound dose of mental relief today. Viral load is still undetectable and there is a real reason for the increased fatigue; low hemoglobin. Low several things, but that feels the worst. Not low enough for extra medication, a good thing, as the favored brand brings along bone pain... no thanks.

The evening rolled in and a long deep breath brought color saturation and smooth edges. Music thumped low in my breast, friendship rolled with laughter, deep creases pulled at my cheeks. There's something to this view, wondering if I'll have my tattoo removed or add another one, when this journey changes phase.

Thin thread and fallen pumpkins

We were in the grocery store, a tiny insignificant pumpkin was carelessly dropped, then dropped again. From out of nowhere, rage lit my hair on fire. I felt the sudden warning signs, saw the quick look of fear from my daughter, caught a glance from a silent clerk. A few words leaked out, dipped in poison, before I could wrestle control, clamp down, breath apologies. My daughter hugs me and says, "Poor mommy", over and over. This is so hard... possessed by these meds, rewired for this destruction, stripped down, exposed. I'm exhausted and edgy, tension's tight, stretched thin as a wire, snap, snap, ping.

Standing here near rock bottom, soothing my daughter's woes, I sense clarity approaching. I've fought for so long, the wrong battle. Again and again, I've blamed "over doing it" for my failings, centered desperately around the fight for rest, "I must do less", blind to the obvious war of wills set for destruction. Stepping now below this seductress surface, I release my grip on the replayed "either...or" (either I will do it all or nothing; success or obvious failure), and surrender to "both...and" (I will both do for others and do for me; I will both perform, look fantastic, smile strength, and I will rest, hide away, hunker down for weeks at a time, take extra long showers, and focus inward, on healing...).

There is an underlying current whispering to me, warning me of possible things to come. There is talk of extending treatment for those with detectable virus in their blood at four weeks, adding another six months to the already promised year. I've dodged this bullet for now, clear at one month, kissed lady luck square on the lips, yet her scent lingers, catching my attention, reminding me of thin thread and fallen pumpkins. I make promises and center my soul. If I can just make these last five months count, really do it right, then maybe it will only be five more months...

Altered Mood

Yesterday was good, today feels even brighter. A late afternoon visit from two friends set me in the right direction, altered my mood and my perspective. I was nervous at first. Took a shower and shed my house bound attire. It was over due, but hard to accomplish when the fog is deep. Yet the old times moved right back in: relaxed banter, easy laughter, tales to weave and plans to make. It was good, very good. I felt present and relieved to hear the sound of my own voice, clear and responsive. Relieved to see their eyes reflect such easy comfort. No need to delve into my condition, plenty of new exciting things about. Wonderful, a break in the obsession, a view out a larger window. The world still spins smoothly, ants still crawl determined, I can still be strong and healthy.

Cupcakes and cookies were left by the pastry chef, my daughter proclaimed her deep undying love with each bite, the evening ended with happy exhaustion. What a good day it turned out to be. Thanks.

Coming out of the fog

Coming slowing around again... yesterday was full of performance failure. I'm still so tired and I seem to ache more than usual. Life on my mind is heavy today... trying to smile and feel something like happiness. Listening to my daughter weave wondrous tales of her weekend away, watching my husband come back from a ride, sweaty and at ease, I'm hovering somewhere outside my body, waiting to reengage. I know it will happen soon, it always does right? Till then I manage semblance, try not to frighten the natives.

I'm half-way through and in need of a push. Checked out the Hep C forum and signed on to listen. Wonderful group, many lines to connect. I'll stay in touch. It's time to learn more, pack my bag with shared experience and follow that yellow brick road out of here.

Round and round

I am rubber and I'm glue
It bounces off me then sticks a new

My mentor and my attacker, the meds, are kicking my butt today. Swing your partner round and round, when you stop you're on the ground, crying like a blubber fish...

Thankful

Today will be my 27th Peginterferon alfa- 2a injection. Everyday I swallow 5 Ribavirin pills (3 in the am, 2 at night). Everyday is hard, some days are predictably terrible: like late Friday nights as the injection dopes my system and then there is Saturday, all day, where my energy is so low and the pain so high, it takes endurance to get to the bathroom. I've got 21 more weeks to go and I've had lots of help.

Did you know that since day one, since the very first injection on April 7th, my mom has taken my daughter for a weekend sleep-over. From day one! Every weekend (bar the very very few that either of us was out of town). My dad has had a major part of it too, even comes home early for the drop off, so I can get back before dark, but it's my mom who schedules, feeds, and prepares. They all play and laugh all weekend. Every weekend! It's better than Disney Land. It's the safest, most wonderful place for her to be when not in my arms or my husband's. I'm so grateful. It allows me to fully surrender, to vegge, to accept my temporary inability, to be non-responsive and non-responsible. It also allows my husband, my 7 day a week care giver, the bread winner, the go-to-parent, to rest and build reserves. It's a gift to him as well and he knows it. Their actions are helping me get better.

My friends have been wonderful too. A few in particular who have continued to look at me with relaxed eyes, high expectations and easy smiles, undeterred by mortality. I've received cards, calls and emails out of the blue. Jewels in the darkness. Present moments in lost space. One friend even put together an elaborate gift basket, a present for each Friday, for the first three months (the critical trial time) and then even did the same for my daughter! Every week on injection day, as my stamina faltered, my daughter would wake and exclaim, "It's Friday!", and run to get our wrapped presents. Her enthusiasm carried me and marked the weeks during a time when life seemed to stop. Each present skillfully awakened lost reserves and offered the next step.

Then there is the family and friend's family. My two favorite cousins go heavy on the whoop whoop with cards and music. My mother in-law has rallied an entire network of strangers (to me) to send best wishes through the ether and say my name in loving tones. One friend's mom has even sent letters and stickers, another joined me for lunch. An Aunt in-law, I've only met once, writes letters of encouragement and sends pictures of the family.

It's unbelievable. All for me. To help me. Like they know I can make it across the finish line and set a personal record, but that there will be sweat in my eyes, so they cheer loud to guide me. I couldn't do it alone and I don't want to be carried. They seem to know this and are perfect. I am so grateful. There is no way to measure their impact and no way to fully thank them. I'm all blubbery just writing this. Thank you. Thank you. Thank you.

Vacation Journal 8 of 8

Tuesday, 10/3/06

Back home

Monday morning held errands in Jasper, final paperwork on land purchase. On the road, head began to hurt. By hour five, I was still telling myself it was nothing... 4 hours later I was officially announcing the presence of "The Headache", popping two vicodin and breathing slow shallow breaths. For the next 24 hours, there would be two hot pokers angrily jabbing behind each eye, a growing concussion from a swinging baseball bat to the back of the head, pulse pounding in ears, and a mind teetering teetering teetering. (new treatment side effect for the ladies? it's the third documented sighting of The Headache, each occurring two days before the start of a new hormonal cycle, three months in a row.... this better be the meds)

"I'm cool with this", that is my mantra. It's not like you can simply distract yourself from this kind of pain. Imagine if you've just broken your leg... can you simply ignore it, sing a song, play a game of cards? No... you just have to be cool with it, which is, of course, totally impossible. But freaking out, clawing at my hair, screaming hysterical gibberish, would surely just make it worse, so I say to myself, "OK, I'm cool with this", then breath slowly and say to myself, "OK, I'm cool with this." Circling in mid air till time slips back closer to normalcy. Which happened this evening, just before dinner, back at home.

The vicodin didn't help much, by the way. Or maybe it did and I would have gone insane, in the cab of the truck, passing through Mississippi....

Vacation Journal 7 of 8

Sunday, 10/1/06

On The Land

First day brought the sign of the snake
timber rattler discarded skin

Sign it's meant to be, I want this land

Anything that reminds me that I'm an animal
just one of the pack
no better than the rest
just as likely to be poisoned
taken in as part of the food chain
or absorbed by microbes

is pleasure to me

Releases me from domination foolishness

Vacation Journal 6 of 8

Saturday, 9/30/06

Thursday was 60% over all, the morning was the best, bopping around, adventure on my mind... having forgotten my morning meds for 3 hours. It's amazing the difference, the strength, the cellular gusto that bursts out in just three hours time! Think about the first day with no pills at all! Will it creep up quietly or spring forward like a tiger, wrestling my spirit and leaping my legs?

Friday was even better, close to 90% regularity. Which was convenient because we spent the day traipsing around a piece of Arkansas mountain that would soon become our own. 20 acres of wilderness, spotted with house size boulders and two 30 ft seasonal waterfalls. Rolling plateaus perfect for a rustic cabin. I hiked and hiked, slowly towards the end, elated.

Just the right medicine to counteract this medicine on a "post-injection Saturday". May I never need to use that term again....

Vacation Journal 5 of 8

Wednesday afternoon, 9/27/06

Alone again, 'lone again, diggidy dog
Just me and my shadow, the family is gone
Quiet and restful, 6 hours straight
No lines to connect, deep bliss on my plate
Rick and saucy, I've had my fill
A shift in my body, over coming the pills
I start to stand straighter, good look around
The quiet seems endless, my feet on firm ground
Now pain's in the backseat, there's room to explore
I reach, stretch and pull, have I been here before?
What I find touches deep, packed away torches
Of light, love, and laughter, sun filled spring porches
Where is my daughter, my husband, the rest?
I want to rejoice and show them my best
I'm still here, it's me, what a wonderful surprise
Below all the muck, desperate for viral demise
I want a big hug, to dance and to sing
I search for my cell phone, I'll give them a ring
Come home again, home again, right away quick
Your mama's calling, she not feeling sick!

Vacation Journal 4 of 8

Wednesday morning, 9/27/06

Dream works

Series of stuck dreams last night: stuck in waist deep mud, stuck in glue, falling building, dangerous weather, crowded sleeping arrangements. All scenarios were filled with weakness, confusion, fear, limited success. Till the final scene: darkened beach, wet salty air, crouching in the shadows listening to instructions. This is to be a special ops training (were the others too?). My mentor was also to be my attacker. He was to use all means possible to stop me, debilitate me, break me, he explained. Then suddenly the game began. I was confused, fearful, weak. Then I saw the raft. My husband stepping ashore, holding the rope line, the raft rocking innocently in the black surf. This was my target and I suddenly realized, if I made it to the boat, all of the games would end. No more pain, it would all be over, for sure. I'd float gently to safety.

My attacker raged against me, struck, clung to me. I couldn't get separated. If I threw him aside, he'd spring back refreshed. I watched the boat, had to touch it. Sudden fierce strength filled my bones, raised my form and gripped his strangled body high above my head. I ran towards the the shore. If I could get close enough, I could fling him aside and lunge for the boat. Husband watching, other forms observing along the beach. They couldn't assist me now, but they won't interfere. I'm getting closer and feeling stronger. There will be split second timing, minuscule chance of easy success and I'm fully committed. So close. He desperately strikes at my heart, I feel warm liquid, but no pain. I am determined. I see the boat.

Needless to say, I'm home today. Just me and the dog. I'm going to float along gently without all the struggle.

Vacation Journal 3 of 8

Tuesday, 9/26/06

"What?", at a count of 23 by mid morning, was the most frequently shouted syllable.

Vacation Journal 2 of 8

Monday, 9/25/06

Today's Menu

thick slice of sites
heavy on the purpose (they are here to buy!)
pile on the ill tempered debates on land value determination, seasoned
heavily with economic down turn, corporate corruption,
and a special blend of social ills
go easy on the patience and fuel efficiency
sprinkle just enough deep belly laughter to mend bridges
mix up mountain roads with floral lotions and body heat
cook with high volume on deaf ears
wrap it all up to go on for hours and hours

I'm home alone again, just me and this beautiful cabin, this view and the dog. Had to pass on today's menu.

Vacation Journal 1 of 8

Sunday, 9/24/06

Car Ride

I don't think I need to go into how the 14 hr car ride on a post-injection Saturday went. I especially don't need to mention those 90+ miles of wavy, bumpy, cracked-up, swervey Mississippi highway insanity, popping a vicodin every 6 hours to hold back the deep bone pain panic, the nausea and the second thoughts. Yet here we are and I'm happy enough to be here. The cabin, the view are all gloriously the same. The headache and physical frailty are keeping judgement and an easy smile at bay.

At the moment, I'm home alone, husband's with daughter, meeting in-laws at the nearest town of Jasper. The jubilant caravan will arrive soon. Savoring these moments now. The crisp air, the quiet.

This is a test of the peripheral nervous system

Sudden shift in plans! Spin around travel schedule! Week long family vacation to Arkansas was thought to occur NEXT Friday!!! It's now 11:27 am and I learn we are expected there today (what?)..... that's a 14 hr drive and and and....... we are leaving before sunrise tomorrow. Yeow!!! My rest mantra is being tested, chewed up, and spit out..... pant pant pant. OK, get a grip, this a test, this is only a test, how hard could this be? We get there when we get there.

So look forward to next week's reflections on 14 hrs of family driving on a Saturday (and back), a week of over excitement with in-laws in confined quarters, and and and..... I got to go lay down.

New research?

Some interesting research has come my way. It points to hemochromatosis (the most common inherited single-gene disorder in people of northern European descent, 1:300) as the possible underlying cause of Hepatitis C problems in otherwise healthy bodies. Those with hemochromatosis regularly absorb two to three times as much dietary iron as normal persons, which eventually harms every major organ, particularly the liver, pancreas and heart. The theory follows that the Hep C virus may not be such a devastating issue (except for being contagious and bad news on a compromised immune system) if the body wasn't already stressed/damaged by the uptake of too much iron, and that treating only the virus may miss the main problem and lead to more health issues in the near future. The study continues to say that a thorough family history is one key to diagnosis. My history includes an uncle with Hep C and cirrhosis, and a father with high liver enzymes but no virus or other known cause. There's a specific panel of blood tests needed to correctly identify the body's iron level and an easy rice bran extract to help eliminate excess. I'm going to look more into this and bring the info to my next appointment.

check out mercola.com, search for iron toxicity, or hemochromatosis.

Humm, we'll see.

Slow curve up (or down)

Trudging in new territory, not much wisdom in the books about how to let a person lie. So many things to do, so easy to justify their importance over your own. But the point of diminishing returns has officially arrived: "doing more" now means not doing it very well and bringing a bit of misery to others. No thanks.

So, time to take it all seriously and celebrate the small steps: today, I savored my coffee longer and did not put the laundry away. Humm... definitely not radiant yet.

Action junkie

How did my first day of rest go?... well.... After two hours of facilitating home school I was still feeling pretty relaxed. Despite the head pounding, I had woken with a new sense of optimism. Can't quite explain the inner release gained from yesterday's proclamation: I will rest. Then I got a bit carried away. The floors needed to be cleaned (really), the sink was full of dishes, laundry to wash, and clutter.... everywhere. It's now 3pm, I've had two major dizzy spells, yelled at the dog, barked at my daughter, I'm exhausted and completely undone. Great.

OK! lesson becomes more specific: How do you utilize the action junkie, passion princess qualities (because they are not going away) to ensure adequate rest... or do you just need to tap into other wilted in comparison qualities, or do you blah blah blaa blue blee.... yeah.. I need to go lay down that's what.

To all my friends and family

For the next six months, do not expect me for dinner. I maybe there, but pay no mind if I'm absent. I am resting in the back room and will no doubt, arrive refreshed, exuberant, and joyously social when the time is right. From here on out, I give myself the right, the privilege, the duty to say an honest yes, no, or maybe. If there's any worry about me becoming a lay-about or taking malicious advantage of my family or friends, then you don't know me very well and you better get over it.

I've been fighting a losing battle for long enough, struggling to be up when down is better, buying time with diminishing returns, closing my eyes to the obvious truth: I just need to rest. Not necessarily alone, but definitely protected. This is my lesson to learn, anyone else may have a different one, under different circumstances, mine may change. It's taken six long months of chemical infusion to reach this edge, this is big for me, it's time to take the plunge.

*special thanks to my best friend...you always seem to know the truth no matter how hard I hide it from myself. Thank you for your honest answers and curious questions. Thank you most of all, for maintaining the highest expectations.... I'm going to be the best sick-person-getting-well ever! Man, I'm going to be radiant!!

Wowwy wow

Oh I love eating. Some days more than others.... but today, this evening in fact, was awesome. I followed my cravings. Put my body into the decision making process..... hummm yummm humm what would feel good right now? It takes some time to really work it out. Standing at the open fridge, pondering leftovers, available supplies, gut interests. Sometimes you have to nibble a few things in order to narrow the search. The nearest grocery store is over 30 miles away and its idea of variety is found in the can aisle, so planning is required for speciality items. Today, I'm going with simplicity. A little left over rice, a few assorted veggies, heavy handed with the red pepper, garlic, ginger, soy and I'm looking at my current heart's desire (slight variations feed the rest of the family). Colorful, textural, wowwy wow! Each bite a pizazz of ultimate delight. My eyes are rolling back in head. My daughter cuts in, "uh mom?" Hey... this is good I explain! Her eyes roll for a different reason. Whatever, I'm getting back to business. It's been over an hour since I ate, and I can still relive parts of it. Now I'm ready for the final course: a fist full of dark chocolate chips and hot ginger tea, or will it be a heaping bowl of oreo ice cream? Man, this makes up for a lot!

Dreams they chase me

The theme is the same: eyes dry and stuck shut, body staggering uncontrollably, mind disoriented and fearful. Since the beginning of treatment, these dreams have reoccurred. Different details, location, role plays, but always the same struggle. I fight to stand upright, stumble in forced blindness. I hear clear sounds of others around me. I pretend to be normal, social, to buy time (I want to stay), but I'm getting rapidly worse. I know they are waiting for me, just let me hide for a little while. My body feels drugged from an unknown source. I don't know how long this will last.

This time I make it to a mirror. I strain to raise my eye lids, one then the other. They feel glued and burn with irritation. Suddenly, I see my clear and unmistakable reflection. My eyes are discolored with white film, the left tilting hard to the upper right, the right pointing off to the lower left. I blink, desperate to control their direction. I stagger back to the bed and sink into sleep. The fight is drained from me, the others will just have to understand, I can't get up just yet.

Arr, me hearty!

Shiver me timbers! Keelhauled by the dreadful poison in me blood. Aye, I be in Davy's Grip now. Dreams they be chasin. Sleep not a wink. Me heads beatin an awful temper. Arr, it be a frightful sight.

*in honor of a pirate party me missing today

Halfway through infinity

Today's the official day. Halfway through a year's worth of treatment for Hepatitis C. Dah Da Ta Dah! Count down for surface penetration of Injection # 24 will begin around 6:30pm. Weather is favorable: skies are clearing, a north westerly wind picking up spirits this morning with an unexpected roll in the hay. So this is what it looks like from here? Cool.

HOW-TO

HOW-TO be sick and get well (hard lessons for the audacious Type A):

• Don't worry... you're still an over-achiever.
• Without help, care, and attention you will look like crap.
  
• Face it, you are no longer enough for yourself, you can't do it alone, and you are worth it.
  
• When you pause to prioritize, you will look hot.
• "Perfect balance" actually includes "needing others".
• To satisfy the accomplishment craving, chop tasks into tiny mini steps, swallow proudly.
  
• Ignore the ever present voice that says stop and sit down for no more than 5 minutes, but listen to the dizzy spells right away.
  
• Accept only the guidance that feels healthy, strong, and successful (you'll recognize it).
• Continue to look for the benefits of a situation and cling gracefully.
• Caution against indecision. You KNOW what you need, so ask for it, organize it if you have to... do you really want to wait around for someone else to get it right?
  

Momma's back

The question has always been intent. It's a fine line that separates good and innocence from all other actions. In the beginning I focused daily on my own intent. My intent to be well, strong, healthy. Imagined revving up each cell and radiating warmth and generosity inwards, cradling each organ in a loving embrace. Sounds slippery sweet, but it was hard work really. I was surprised at how much random angst my brain exercised and how badly it felt to feel it. At one month I had gotten pretty good at it and was rewarded with the ultimate trophy: an undetectable virus. Not saying the meds had no part in it, but come on.... slim chance they were the sole hero here.

Since then I've slacked a bit, a lot on some days, and I'm beginning to feel the effects. It's hard work with seemingly unlimited rewards, yet sometimes I just want to take a break, please no more. Well ....brake's over. Time to get back on track: threw my back out yesterday brushing my teeth. Come on! What's up with that! Brushing my teeth! Something is not right here and I obviously could use a little more potency in the strength department. And what's with crying uncle all of a sudden, "...throw me a rope." Get a freaking grip! I'm kicking butt here remember and this sorry attitude's not going to cut it. I've got 6 more months sitting on my pretty plate and I'm going to eat it all, big gulps, smacking my lips, ummm tastes just fine. You better believe it baby. Momma's back and she's huungry!

Fist full of hair

Not yanked, pulled, or grabbed, just gently falling all around me. My thicker than average mane once topped the charts at 150,000 to be sure. Now? It is amazing, how much can blow away in the breeze with no sign of a struggle. See you next spring...

O'Hair, O'Hair air air
Where will it lead us from here er er er.
All our dreams we held so close.
Seemed to all go up in smoke.
I hate that sadness in your eye yi yi.
O'Hair, Oh oh hair
Where will it lead us from here er er er.

(forgive me Rolling Stones)

Life will be rosy

Visited my ARNP yesterday, 23 weeks and counting. My levels are good: platelets, hemoglobin, yata yata bling bling. White blood cells dipped out of the comfort zone a few times in the past, but are now showing durability. It's up to me to check in with the other levels: levels of sanity, joy, strength, endurance. I cried uncle on a few of them. Asked for sleeping aid and stronger pain meds for the headaches. Last spring, I remember chuckling over the list of expected side effects, especially the bit about fatigue and insomnia. How could you have insomnia if you were fatigued? So naive, so naive. It turns out fatigue isn't tiredness in the sleepiness sense. It's more like the deep over whelming weakness of heavy bones and jelly muscles. So yeah, you can be a blob of powerless energy and lay awake most of the night. I coped and coped my little heart out, now throw me a rope.

I asked to have my viral load rechecked. She said once it dips to the undetectable level it usually stays there for the rest of treatment... Whether it remains there after the meds have stopped is the critical question. If any parasitic beasts remain, my animal drive to survive must continue the blasting on its own. I will be strong and relentless. Maybe there will be none at all and life will be rosy. I'll get a partial answer to that question in a few weeks.

Green Peppers

The knife caught my finger on the hard down stroke. Just a glancing blow to the finger nail, yet the immediate effect was the same. On the outside, I look totally normal, like a regular healthy person (except for the thinning hair and the periodic appearance of pain - purely med induced). On the inside, I'm forever reminded of the death eating robo virus surging through my veins, selfishly reproducing and searching for fresh hosts. I freeze, fear driven eyes scanning for crimson. I imagine buckets spilling towards my daughter, "Run, don't let it get you!" This time we're safe, none to be seen. Whew.... Automatic drift to what-ifs: toss the green peppers, bleach the knife and cutting board. "Stand back!" I say, "Watch out, it's trying to get you, too!" Should I do that anyway? What if the speck is so tiny I just can't see it? I pause...frozen now with indecision.

Is this what it will be like for the rest of my life? Is this how it should have been before I found out? The liver biopsy estimated 14-20 years of virus hosting. Fourteen to twenty? Was it the appendix surgery at age eight ('78), the tattoo at age 23, or something unforeseeable in between? I hate this road of thought. I always end here...worrying... did I pass it on? please no........ I remind myself, my daughter and husband don't have it. But I bled like a stuck pig during labor, what of the unsuspecting health care providers? I didn't know. I'm sorry. I want everyone tested. I want to know. I want to save the world.

I inspect my finger. Just a smooth sliver of nail missing. Where is it? I toss everything, scrub the knife, board,and counter top, start over with shaking hands. Overly cautious forever.

Happy Fool

Last night felt good! Voted for the primaries in a tiny one room cinder block storage house, standing in line chatting with the locals (only room for two at a time). It had rained earlier, I learned; a good shower some said. Rural life has its bling. Social life continued amongst the parked cars, we weren't invited though. Our surnames aren't from around here. Thirty minutes later, pizza tasted good. I blipped around the kitchen cooking like a happy fool. Joking with family and laughing at the dog.

A rare look from my husband and daughter caught me off guard. Welcomed relief. Nostalgic happiness. My caregivers. What must this be like for them? To view illness and pain, up close and so personal. To be needed every day, day after day. I do my best. Asking for help did not come naturally for me. "Doing less" was even harder. House keeping has suffered and my sense of adventure is satisfied when I can get out of bed with a smile. I work hard to take care of myself, so that I can take care of them. It's the least I can do and often the only. I long for these moments of relief, happiness, a little fun, and hope for future greatness. The evening was memorable, I dreamt of rivers, woke with a smile, toes tapping.

Staying Alive! Staying Alive! oo oo oo oo Staying Aliiiii iiii iiii iiiive!
doodi doodo doo doo doodi do Staying Alive! Staying Alive!

Yeah!

Today I feel good! I'm hungry! I'm making pizza!

late next spring

My goal, after treatment, is to run the shuttle of a canoe trip. Not the trudging along panting, drooling, heaving kind of running. I mean the flying, soring, head up, shoulders relaxed, body flowing kind of speed. YEAH! Five miles at least (hey, I never was that much of a runner)! That's what I'll be doing late next spring.

I'll finish treatment sometime in March. I can't quite look at the exact date, the possible details of that day are just too enormous. Will it all be for not? I begin to image the "oh well..." statements coming out of my mouth, "...a whole year". Even the flip side is daunting, will I actually be "cured" (in quotes because there is debate as to whether a true cure is possible). At one month the virus was already undetectable. Which jumped my chances from 43% to 75%... chances... chances of explosive joy? of relief? of future wellness? of a longer life? That's enough of that talk. I'll just keep dreaming of days filled with physical relief, boundless spirit, and a fast step.

full glass of water

Prioritize, prioritize, prioritize - do what matters most FIRST, because the rest might not happen. How many times must I relearn that lesson!

In the morning that means drink a full glass of water, then make the coffee. What's so difficult about that? Well... this morning: it sure would be nice to open all the windows in the house (fresh morning breeze is the best), then start a load of laundry (my favorite cut-off jeans are looking greasy), then stew over last night's small marital conflict (I just can't believe ...), then coffee.... right? But now I'm hurting, head swimming, beginning to contort. Uh oh... just finish the coffee... wait, I need to drink water, oh my head... I'm going down, on the floor, tears streaming, head pounding... stupid stupid stupid... forgot the lesson again! OK... Got it...now I need help. Call to husband, helping arms deliver salvation, desperation gulps it down.

Ode to Saturdays

Daily doses of ribavirin are somewhat manageable, it's the Friday night shot of peginterferon alfa 2a that kicks my ass for two days. But even that's unpredictable - just enough random extremes to keep me interested.

Oh Saturday, Oh Saturday, Where art thou sunshine.
Your skies filled with hue, Shined on things of new.
Now you smell of poo, You can go suck glue.
Oh Saturday, Oh Saturday, I miss your sunshine.

chocolate chip cookies

Husband called earlier, daughter just finishing her 6th roller coaster ride of the day. Sounds of large brightly colored thrill machines squealed in the background. The phone changed hands: "Mommy, I..." frenzied joy, bursting pride, first real taste of delicious risk. I need a cookie.

off to the park

Off to the the water park my daughter and husband go. The final celebration of the 6th birthday. Meeting my parents on the way. A day of excitement and joy. I had planned the day weeks ago. Planned to go myself. Visions of fast rides and wild splashes, laughter and shared memories. But I had forgotten my hep C eyes. The headache reminded me...creeping up days ago, lingering in full force this morning. I can't go on such an adventure. Not this year, not with this weight. I can't pull it together: new visions of crying, contorted frame and anguished glances from strangers face me now. Best to stay home. I've charted the progression of such days, coulda shoulda known it was coming. Something to do with the monthly hormone fluctuations, I guess... that's what the calendar shows anyway. New insights the doctors can't predict. The makers of my pain display long lists of possible aliments, neat little numbers collected from past patients. Each with their own story, their own flavor, possibly their own conclusions not gathered in the data sets.

A year ago I was still searching for different answers, not yet accepting the hep C conclusion. I was making calls and demanding new tests. Each result drifting me farther away from my neat little world. So many years, living free of this knowledge. Today it's hard to say I'm glad to know it..... yet I am. Better to face it now while I'm still strong and healthy, right?. Do this once and hope for never again. What we will do for the 43% chance of the elusive "cure".

monsters in the hall

I'm out in the yard, my daughter inside (potty break), she yells for help, shrill staccato. Sounds of terror rush to my feet. I leap, run, jump, fly, "Where are you? I'm coming!" Find her huddled on the toilet, sounds of monsters in the hall still ringing in her ears. She's safe. My breath catches in my chest, eyes swim with dizzy distortion. We hold each other, smile. I may pass out, yet now I know I can still do it. I had wondered, worried the weakness from treatment had made its way to the mama bear adrenaline source. Could I still carry her for miles, running crazy with speed through the dark forest to safety? Could I protect her from the evil intruder with superhero strength? Could I lift her to safety, while hanging one handed from a mile high cliff? Could I scale a burning building and pull her from its deadly fire? Yep. I'll die afterwards, consumed with chemical pain and fatigue, but "afterwards" is just fine. I still strong baby.

crusher

Today my head pounds to a different beat. my eyes hang half open.

To let this move on
Move through and over
Must be a miracle
To be and not be crushed
To smile with wisdom of greater days
To believe like you know
Fade into the surrounding lushness
Surrender to greater plains

Officially I have Tylenol (no more than 4 a day) and water, lots of refreshing water, as my arsenal against pain. Enough for most days - not enough for today. Inhale, hold, exhale: lessen the nausea, lighten the mood, broaden the picture, the perspective...ahh the mighty perspective, my most important ally. Wings that fly, view that lifts and separates. Just a small touch, not a blast. The pain is still present, the head still pounds, yet all is manageable.

birthday reflection

Yesterday started off wonderfully. My daughter's 6th birthday! I got up early, brought fresh coffee upstairs to supplement the package ripping present extravaganza. Smiles and laughter. warm hugs and kisses. She's so strong and healthy, beautiful and smart. I'm so proud of her. breakfast, cake making, food packing followed - a day at the beach planned and in prep..... too much activity - dizziness, pain, I crumple in a chair and try to look peaceful. This is a happy day - I will not crumble! fishing is planned and it looks like I'm being excluded "just me and daddy..."ok, probably best".... husband sees my state, steps in and takes over. Then I'm back in (so the dog can come... hummm ok). Sound is becoming painful, can I do this? Inhale, hold, exhale, things look brighter, broader, and in greater perspective. Mood lightens and we gather together.

The day is good, down to a St Marks hide-away. gorgeous... yet the resident bug population appears to have been starving before our arrival. a long walk back to the car. We sing songs of bugs and poo and laugh the steps away. I'm tired, not sleepy, just confused and weak. It's ok, look peaceful and content. The evening is filled with cake, ice cream, and friends. By 8:30 I'm reaching for my head and bidding what I hope is a graceful good night.

speed, strength, running naked

there was a river trip. the kind with wild white water and canyon cliffs. several rafts held friends, my husband and child. the sky was brilliant blue. we stopped for lunch and a nap on the sandstone rocks. I felt tall, strong.... maybe I'll go for a run. dressed in running gear I step off. running down this old, ancient clay highway. strange trees, palms, and ferns lined the edge. people moving slowly, carrying large loads, walking on sandaled feet. I run, strong, feeling the wind and the ground beneath me. up the next hill then back again to my sleeping family. all peaceful, content. run again. now I'm naked, barefoot, tanned and weathered. heavy white toga draped loosely over right shoulder, billowing with the speed. I am strong, fast, light and smooth. I pass travelers. there are other runners. we smile as we pass. easily dodge an old man with a heavy load. up the hill then back again. stronger, faster, every muscle burning with pleasure, lungs filled with warm dusty air...... then.... consciousness moving towards pain and weakness, my body crushing under the heavy burden of treatment.....noooooo run again, hold on to the highway..... I wake.