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.
Tuesday, October 31, 2006
Monday, October 30, 2006
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...
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...
Sunday, October 29, 2006
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.
"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.
Saturday, October 28, 2006
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.
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.
Thursday, October 26, 2006
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.
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.
Wednesday, October 25, 2006
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.
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.
Tuesday, October 24, 2006
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.
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.
Monday, October 23, 2006
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.
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.
Saturday, October 21, 2006
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.
'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.
Thursday, October 19, 2006
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.
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.
Wednesday, October 18, 2006
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.
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.
Tuesday, October 17, 2006
Adaptations of beauty
Today's suggestions, by my 6 yo daughter, to fit the mom-on-meds go lifestyle:
*we home school
- Lets play follow the leader, real slow, you can go first mommy.
- Lets climb the tree fort and lay down.
- Lets go outside and play, you can sit on the porch and watch me, I'll carry your water.
- Lets just do 1/2 of school* today, then take a break, I don't want you to get too tired.
- Can I water your plants?
*we home school
Monday, October 16, 2006
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.
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.
Sunday, October 15, 2006
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.
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.
Saturday, October 14, 2006
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
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
Friday, October 13, 2006
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.
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.
Wednesday, October 11, 2006
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...
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...
Tuesday, October 10, 2006
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.
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.
Sunday, October 08, 2006
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.
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.
Saturday, October 07, 2006
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...
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...
Friday, October 06, 2006
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.
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.
Wednesday, October 04, 2006
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....
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
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....
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!
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.
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.
"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
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.
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.
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.
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