Walk, walk, walk...

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

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

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

More water please

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

Unfortunate consequences

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

3/4 dose

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

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

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

Easy there, girl

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

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

slow it down...

take it easy...

easy there, girl...

whoa... easy there...

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

(9:24am)

Transfixed

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

Ummm... well... no.

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

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

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

Travel time

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

8 month check-up

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

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

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

Why things just don't get done:

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

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

What has survived

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

Oh feedback loop

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

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

3 nights of house dreams:

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

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

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

29 minutes

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

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

My little elephant

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

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

Glimpses of the sky

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

Crash wall

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

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

I am the Whale

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

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

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

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

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

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

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

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


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

Days moving quickly

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

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

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

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

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

Come home, baby

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

And showers

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

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

My date with a Chuckey Monkey Milkshake

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

Dancing on feet

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

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

Balloons on my back

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

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

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

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

*You gotta sing it...

Tornado

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

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

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

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

Eyeball (eyeball, eyeball, eyeball)

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

Vroom vroom

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

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