Shaking me up

Good morning.  I didn’t get my second chemo treatment last Friday, as my platelet count was too low.  Ok, this was disturbing. This was only supposed to be my second dose!  Hopefully, the lab thing was just a weird snafu and I’m merrily making platelets now so I can receive a full dose of drug tomorrow.  Let’s hope so. 

In the infusion center, my lovely chemo nurse, Lee, came in to draw my blood, and I told her why my blood was boiling just the tiniest bit this fine morning. I left the cancer center the week before feeling as if I had been flung a lifeline so I would never get caught unable to reach someone if I had pain.  Well I had a question for the palliative group, so I called the number on the card.  Guess what?  It was the main cancer center number, and I was put in a queue over and over again.  I hung on for what felt like hours and hung up.  I tried again; same thing.  The next day, with my question still banging around my brain, I called again.  I spoke to someone who said the NP would get back to me.  That evening she did, and said she would check with the physician and call me the next day.  Which she did not.  I now understand that this was a funny week and someone was out sick….but what I got was the abrupt severing of the most vital of lifelines.  Oh, the experience made me feel vulnerable and teary and angry and just generally awful. 

What does the little guy do, I ask you?  I know this system inside and out, and it is broken.  Good people try really hard to put band-aids over the cracks, but in general, the system does not work so well for the patient.  What would the world be like if all patients in need of palliative care were given someone’s beeper number to call instead? In all my years as a cancer patient, the only place I really have had repeated trouble is accessing the system.  Isn’t that silly?  This is the place most people get caught, especially those who don’t understand the crazy system.  Again, all those fabulous nurses and doctors and others generally want to help more than anything. Problem is, they don’t know you are calling and calling and calling, or banging your outchy little head against a wall just trying to ask if you might increase this or change that.  And I still get called  “McKinley” when being called back for an appointment, after I’ve raged against this machine over and over again. I know I have talked about this previously, but please, anything but this!  Call me Ms or Elizabeth or doctor McKinley.  I wish I had the cajones to walk up to the woman who has just screamed “MCKINLEY”, and tell her that I will not move from my spot in front of her face until she announces me across the waiting room as GODDESS OF GOODNESS AND LIGHT!”  (I might have said this in a previous blog, but bear with me).  Ah, it makes me giggle just thinking about it.  She has no idea what her words do.  She needs to know.

Anyway, I feel like I need to shake off all these muddled feelings of frustration and disappointment and, ok…rage.  I’m generally pretty upbeat and happy, but I’ve been sitting on my rear for days feeling quite disgusted –mostly with myself. I want to jump up and down and do the hokey pokey for a few minutes to dispel the bad karma.  Not so sure it will work, but I am thinking about working on it. I really just want to watch more episodes of The Wire, or escape to Middle Earth and become Aragorn.  But mostly I’m just eating.  I have a winter farmer’s market delivery every other week, and I am not sure I can find another way to cook kale or beets or brussel sprouts.  I have to eat like a maniac just so I don’t waste it all.  My husband will nibble on a brussel or two, but beet greens and kale?  Dream on, sister.  What was I thinking?  So here I am feeling angry and disgusted while stuffing kale into my mouth. As you can tell, I’m feeling out of sorts and a bit twitchy all over. Someone needs to shake me.

And then along comes this poem from the internet depths, and I am shaken.  Poetry is a miraculous thing.  See what you think of this and these:

TIRED OF SPEAKING SWEETLY (Hafiz)

Love wants to reach out and manhandle us,

Break all our teacup talk of God.

If you had the courage and

Could give the Beloved His choice, some nights,

He would just drag you around the room

By your hair,

Ripping from your grip all those toys in the world

That bring you no joy.

Love sometimes gets tired of speaking sweetly

And wants to rip to shreds

All your erroneous notions of truth

That make you fight within yourself, dear one,

And with others,

Causing the world to weep

On too many fine days.

God wants to manhandle us,

Lock us inside of a tiny room with Himself

And practice His dropkick.

The Beloved sometimes wants

To do us a great favor:

Hold us upside down

And shake all the nonsense out.

But when we hear

He is in such a “playful drunken mood”

Most everyone I know

Quickly packs their bags and hightails it

Out of town.

In the Middle (Barbara Crocker)

of a life that's as complicated as everyone else's,

struggling for balance, juggling time.

The mantle clock that was my grandfather's

has stopped at 9:20; we haven't had time

to get it repaired. The brass pendulum is still,

the chimes don't ring. One day you look out the window,

green summer, the next, and the leaves have already fallen,

and a grey sky lowers the horizon. Our children almost grown,

our parents gone, it happened so fast. Each day, we must learn

again how to love, between morning's quick coffee

and evening's slow return. Steam from a pot of soup rises,

mixing with the yeasty smell of baking bread. Our bodies

twine, and the big black dog pushes his great head between;

his tail is a metronome, 3/4 time. We'll never get there,

Time is always ahead of us, running down the beach, urging

us on faster, faster, but sometimes we take off our watches,

sometimes we lie in the hammock, caught between the mesh

of rope and the net of stars, suspended, tangled up

in love, running out of time.