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.