Pancakes

Who knew making pancakes could be so hard. There's a mix, the pan, the stove... yet something always goes wrong, and that's where I fail, fall apart, crack...

ME... the formerly known heroine of conflict, risk seeker, stress taker... hell, I worked 10 years with runaway and homeless youth, fearlessly broke-up fights, joyfully facilitated resolutions, traveled, trained, pushed, pulled, bring it on, 24/7! I was 'Program Manager of the Year' back in '99, for the whole State of Florida, really!

Oh... if only they could see me now... reduced to tears, heaving over stuck pancakes, daughter ducking for cover, hubby suggesting cereal, talking me down, just put the pan in the sink, you can do it, please... Puffing noises leave my lips, zut zut zut goes my brain, massive hemorrhage rapidly building, spatula gripped, white knuckles, huh huh huh whew whew whew whewwwww...

I wouldn't last ten seconds in that shelter, couldn't help a single soul, not on these meds... How have I made it 43 weeks? How does anyone do it? This virus better be gone, that's all I got to say...

Quite manageable

Tuesdays can be over done, a bit tired from Monday's high, Saturday still far away, best to ease back and chill, really not so bad, quite manageable, could be way worse.

Pit relief

Mondays are my wake-up days, hello to big laundry days, dishes, dirt, and toilet days. Not saying that any of those things get done, I just become aware of their pile-up. There tends to be several readjustments, big breaths, and if I'm lucky, a load of socks to put away. Performance is variable: fatigue, weakness, headaches, brain fog, bitchiness, all take turns with intensity, but there is never any wobble, that disappears some time in the night. Monday is usually a good homeschooling day, having just returned from her weekly weekend while on treatment sleepovers, we're both fresh and a little more tolerant. All things said, Mondays are my favorite days (next to Fridays), though chores rein, the pit relief is beautiful, shiny, light. I'm finally out, free, and it takes a lot more to make me cry. This is when I'm most hopeful, time remaining a breeze, next Saturday forever away, and laughter leaks out almost like it used to.

The Elvis wobble

Sunday is Elvis wobble day. Shaky rubber bands stagger me across the room. What's left of large muscle groups burn and shutter. How they hold me up is a wonder. If I can keep it here, at this level, the day will only get better. Sit down, chill out, breathe deep day. But the slope is still so slippery. Twice already the tipping point has come fast and furious. One tiny crescendo and bam, it turns into wail day, blubber, heave, moan day. Waaa at freak-o level. Only serious mental yoga moves can gently pull me back and I'm getting good at that. It's never a sad day, still a hopeful day, just a fragile day. Still, it's a best to be alone day.

Letting go

It's hard to let go of Fridays, when my sides are finally manageable, when I've lightly brushed the concept of mobility, maybe even felt a spot of physical strength. I often lie in bed and observe the "last day till tomorrow". Sleeping means it's over. It's a decision to wake up. Just a little while longer, I look around, take in a few breaths.

Then it's Saturday, the worn pillbox, and the hole. I'll wake slowly, assessing my physical state, checking parts. I'll have just a few more hours till it really sets in, till the combination kicks, speech fails me, skies darken, I retreat into my hermit nature, and no pain relief will erase it.

Saying good bye to these moments every week. Only five more to go.

Nine muffin

Finally something nice, lounging in a shallow river, a sensual woman stretches out before me. Smiles, laughter, says her handle is Nine Muffin. She visualizes nine crescent moons, complains it's too masculine. I repeat her words, but I see cup cakes floating near her chest, topped with cherries, so delicious. She likes this. I inhale deeply and wake happy, content, first in a long time.

Just a little while longer

Thought the end of treatment would be easy. Figured my body would be "used to it" by now. Nope. More fatigue, continued need, and those around me are getting tired of it. I see it in their eyes, aren't you done with this by now? Nope. I struggle with disappointment, indecision, and mental weakness. What I want vs. what I think vs. what I can today. All jumbled, switching places, unpredictable and sassy. To be expected, to be expected, to be expected, right? Still on meds, still more to go, hang in there.

Soon plans will come free enough, energy will light my feet, and my face will lose it's plastic sheen. I know this. And my hair, Oh glorious hair, my lion's mane, will grow and grow and grow... Soon, soon, soon... but not yet, forgiveness and patience still on my plate, and I still need help, lots of help, for just a little while longer. Hang in there (everybody).

ahhh the lessons

I'm using everything I've got,
to keep it cool,
priorities selected,
settled.
This is a tough one,
stumble trip,
claw scrape,
forgot to flow,
along.

Stop it

It's too late to take the poison out,
Stop crying over dirty pans,
Stop crying over coffee beans,
Stop crying at the sound of your little girl's voice,
It's too late to take the poison out,
Your bones hurt,
Your body's tired,
You're in for this ride,
It's too late,
Just let go,
And float.

Continuous feed

654321 654321 654321 654321 Done 654321 Done 654321 Done 654321 Done 654321 Done 654321 Done 654321 Done ahhh ahh ahhhhh ah ah ahhh ahh ahhhhh 654321 Done 654321 Done 654321 Done 654321 Done 654321 Done 654321 Done 654321 Done ahhh ahh ahhhhh ah ah ahhh ahh ahhhhh 654321 Done 654321 Done 654321...

Take it

Spoke to my other doc, the doc, my treatment doc, neutrophils bounced back up, but red blood cells are hanging low low (yeah I new that, thanks). So a full dose tonight. OK. Back in the swing. Got things to do, only one a fore sure (get my daughter to my mom's), the rest may fall. Realignment with the hubby this morning, ended only slightly better than it began. Treatment's tough on everybody. OK and I'm doing better than I could be (I am calm, with self assured speech). I'm one tough chick and when I say I can't do something it's because I simply can't, honest, innocent. No double meaning, no inside jab, no bitter dance of resentment, nothing, just another performance failure that I've come to terms with. So there. Take it. I am.

Cautious

Good news, eyes aren't any worse than they were. Doc said things are looking fine, gave the go ahead to finish treatment. Happy for my eyes, mixed feelings for the rest of me. Strange stirrings within. Want to be done with this poison. Seven more weeks is beginning to feel longer than expected. Miles long, reaching well over the horizon. Yet the calendar speaks of possibilities, "I'll be done with treatment then". Cautious. Tomorrow's unknown quantity, quality, speed, how will it be?

Once again

my clothes hurt, especially my shoes, but I don't want to be naked, too windy. Even my comfy socks, baggy pants, all scratchy. Lost the bra hours ago. Done crying. I've eaten too much by hardly eating. Like constant PMS. I'm so ready to detox.

Holding my breath

I keep asking those around me, "When is your actual end date? When did you 'go undetectable'? Do you think it's gone?" I keep asking those questions over and over, because that's all that sits on my lips. When do I end treatment? March 2nd, it'll be a Friday. When did I go undetectable? At four weeks (quick flash view of statistical 83%, not sure if that's the real percent chance I had of kicking this virus when I cleared at 4 weeks, but that's what always flashes up). Do I think the virus is gone? (pause) Is the virus gone? (turning inward, tingly sensation scans internal systems, shoulders flush red) Uh.... I don't know. I think so, but I don't want to be wrong (chest slamming pain, turn away, turn away!). But I do think so and I even think that if I don't stop soon, this medicine will leave permanent damage, to my eyes (my precious eyes), to my other organs, muscles, bones, eventually kill me (whew, sinking sensation, shake it off). So seven more weeks, seven more shots, and 230 more Ribavirin tablets. I can do that, but that's it. I'll take the last three morning pills on the 2nd, then end with the 6:30pm injection, and not take the evening Riba dose, rounding the cycle off nicely, done (chest inflates, again, again, deeper, deeper, hold it, yawn, yawn, hold it, eerrrrow... release... yawn again, yawn). I must have been holding my breath.

Another 3/4 dose

Head's full of lead, painful, but my legs never got shaky, that's nice. Hole wasn't so deep either, not so dark, damp, lost. Good enough... move along then.

Marking another first

My daughter's first gymnastics class. She called when she got back to her grandmother's house. We had been planning this for months. This is a big deal. As a life time homeschooler, this counts as the very first out-of-home, organized, fully separate, signed up for activity.

She was thrilled. Said she did the best pull up, that some kids couldn't even do one, and she did it easy, better than anyone she thinks, and she met a new friend, though she couldn't remember her name, then something about a trampoline, a booty drop, and she misses me and see you tomorrow, bye....

I wasn't there, obviously. Home sick. That was planned for as well. Never any mention of me going, not on a Saturday. So I worked every day I could, to set her up for success. We read through the rules, tried on her new leotard and practiced in the front yard. I was the coach, she the ever ready, endless energy spasmoid. I sat down mostly, gave funny orders and clapped. The social part would be easy, she chooses friends anywhere, it was the waiting in line part that I thought might be a stumper. No problem apparently. The only glitch was my mom putting on the leotard backwards. She had to stop and change it. But that wasn't in her story, she was the best. Wow.

My dad took pictures. Mom said there were other grandparents there too. I wonder if they were filling in, their daughters home sick, recovering from something. I bet they had a blast, all together. I bet she'll show me her moves when she gets home. Can't wait to watch her face. Crazy.

So I'm home. A reduced dose, but I can't feel it. The reduction that is, just as bad as any Saturday. Lame.

Visual play

My very own aurora held me to the side of the road for more than a few minutes. 3 visual disturbances today, usually no more than one. First, over coffee, steam rose softly within my eyes. Then later with the grocery cart, pushing pushing, peripheral picture tube flickered in and out. Just need to keep going, look normal, don't fall down or look at people, it's upsetting when you can't see their face.

Then finally driving home,
Shuttering movements, pretty colors,
New it would pass,
Nicely if I sat,
Chillin on the side of the road.

Here and now

Practically manic. Animated, expressive, arms flying everywhere, eyes zipping this way and that. Legs are still, I'm still sitting, lets not get too crazy, this is all relative, but the fog is definitely lighter, thinner, less oppressive. Tired still, but not so weak. Slightly clear vision. Ready. After 40 weeks, am I finally adjusting to the meds or is it just the stars, the moon, the doughnuts. Oh, that's the trap though isn't it, thinking past today, adjusting expectations, must take today as today. Enjoy here, now, without worry, without fear of loss, without question. Float along, peaceful, joyous with each unexpected minute, present, observant, grateful, hungry.

Good, good, good

I feel good. Woke up happy. Kept checking to see if I took my meds. Did I take them? Yep. One of those days, only gritted my teeth 2 or 3 times, just a little eye brow raising, not bad, not bad at all for a Tuesday. Damn good really (man my bar is low). Good thing cause I got stuff to do: friend coming tomorrow, parent meeting on Thursday, and a reduced dose on Friday (white blood cells dipping low again, but I can't feel them, hah!), so the weekend looks bright as well. Yeah, I can do this, piece o'cake.

All done

Sat for a moment in silence, pressed the letter to my face, then dropped it into the box. Daughter moaned in the back seat, come on, she said. OK, I said, lets go get a doughnut. Whoopy, whoopy, whoopy, yeah!

Terrible turd intrusion

Got the address, took two calls and light chatter. Have written the letter, four maybe five attempts, rewrites, second guesses, stomachaches. Full circle, many times, over and over, now I'm clear... it's for the .o1% chance he's got it, still young and healthy, and therefore best able to cure it before it ever becomes a problem... 99.9% chance it's just a terrible turd intrusion... lets hope I never hear any response... ooooommmmnnnnoooorrreeesssppooonnnnsseeeee
oooooommmmmmmnnnooorrreeesspppooonnnsseeeeooooooommmm
mmmmbbbbeeeeecccclllleeeeaaarrrrrrroooooommmmmmm
bbbbeeeeeeeccccllllllleeeeeaaaaarrrrrrr

I want

I want a doughnut
or a long cashmere body suit
I can roll around in.

Hand my baby over

I'd rather hand my baby over to the fireman, then call my first love and tell him he may have Hep C. Because that's what I'd be saying, no matter how I put it, how remote I spin the possibilities. It's what I'm saying.

Yet I'd do it, hand her over, if my house was burning down around me, and I was trapped under the debris. I would certainly do it, and not only that, I would do it 100%, set her up for success, certain and with catlike reflexes. I'd look her in the eyes and give her all my love, all of it, in one big wave, and she would remember that look for the rest of her life, our souls would blend and it would bring her a blip of happiness, strength for the rest of her years.

I would do it.
And I want to completely avoid it like a long suffering death, like a...
Completely.
For a few more days at least. OK? Please. I'll be ready, but just not right now. OK?

It's weird

....talking to myself. Narrating my world, as I step towards the bed. Splashing it down on the page, leaking, spewed, purged. Talking to myself, captured, encapsulated, presented, released, like a bubble, bloop, from my chest.

Language warning

I am hobbled.
Swoosh,
swoosh,
swooshing
in my ears,
bent over,
consumed.
Wish I could skip through this day.
Blink
and be past it,
tomorrow.
Hubby says this is sad.
It is.
Of course it's fucking sad.
Fucking-a.
What the fucking hell, God damn right it's fucking sad.
8 more God damn days like this?
I don't want a break.
I want it to be fucking over.
God damn fucking over.

Done.
Gone,
for fucking ever.

Reaching

OK
one part notifying past
will call
compose letter
send it

Other part
notifying self
risking tarnish
of my own idyllic youth
innocence
purity (of intent)
sense of self, vibrant, strong
safe
binge-ful
feels false

I had always counted on binging
cutting lose with extremes
from time to time
some can stay, maybe
some can not

Forming new pastures
morning the loss of others
morning my own Fool
is it time?
I love that Fool
and yet it's easier to reach for the moon
now
inform, protect, accept

Stone in my belly

Dreamt of my first love. We were at a play date. Two other good friends were present, our children the same age. Another woman was there that we didn't know. Then in he walked, my first love. The other woman was his ex-partner, the child was his. One of my friends shared an 'oh no' look with me. I avoided his glances, then turned to face him, surprisingly wonderful, familiar, safe. We talked, catching up, smiling. I felt proud of him, standing there so strong, healthy, vibrant, happy. I wanted to touch him, hold him. Then I remembered my Hep C. He didn't know. I struggled. Sadness began to overtake my movements. I longed for purity, innocence. We met afterwards, at his home, my daughter played in the background. I didn't want to tell him, tarnish him, lose his handsome smile. My chest hurt, my hands shook. I knew I should. What if he has it, not knowing, as I did only a year ago? Tell him, I tired, lips urging me forward, longing to kiss his face, gently. I woke with a heavy stone in my belly. Not sure how to find him, somewhere in Montana, but I will try.

Forgetting

Cranky, dull, tired.
What was I like before?
I'm starting to forget
Life before meds.
Did I complain?
Was I stiff, hobbled,
Whiny?
Like those around me now?
Did I long to sit all day,
Watching the wind
Blow?
Did my head hurt everyday?
I'm starting to forget,
What it was like.

Supermom

Oh my
supermom
woke up strong
busied herself with
mortal chores
flash
flutter
heave hoe
crafty projects with
little one
sewing bags
felting wool
ended abruptly
visible cracks in
supermom's voice
shook foundation
delayed breath
wrestled possession
tiny tears and
churning stomachs rescued
calm restored by the flickering TV

Six to seven

Daughter ignored her fever and spun late to Lotus. My muscles twitched in memory, but not enough to move. Eyes closed for good an hour before lift off. Dreamt of blind spots, hospital curtains and pink plastic dildos. Walked 100 yds, maybe two, this morning. Returned a marathoner, jellied legs and winded. Shower and a nap setting me straight.