Update and a Poem

 Usually, after my every-three-months scan comes up clear (and I’ve done this often enough now to be able to say “usually”), I breathe a sigh of relief and happily face a few months of reprieve.  This time, however, I had a different response.  Don’t get me wrong – I am truly grateful and can even say thrilled at the results.  Many are not so fortunate.  But the worry did not completely abate.  Partly it is because my primary oncologist told me that he wants to continue scanning every three months for three years (from my surgery), instead of the two that I had anticipated.  That isn’t the worst thing in the world, and I can only hope that I make it three years in remission.  And I do understand that it is good to catch things early.  He just reminded me that my rare cancer recurs frequently, and that my specific version was aggressive.  This isn’t one of those “make it for five years and you’re pretty much home free” types of cancer.  This kind (leiomyosarcoma) is a “you’re never home free” variety.  I don’t think I’ve heard a single story of “one-and-done,” although that doesn’t mean that it has never happened.  I suspect anyone who may have made it into that camp dropped out of the support group, and we just don’t hear about them.  I do know of some twenty-year survivors.  But the statistics aren’t good.  You don’t want to know the five-year survival rate.  Let’s just say, it isn’t great.

 

In addition, I had a melanoma cut out of my leg last month.  My dermatologist says it was early stage, and she got clean margins.  I assumed I was done with it, but when I went to my local oncologist after my recent scan, she told me to watch out for swollen glands and lumps in my groin, which would indicate the melanoma having spread to lymph nodes.  Sigh…One more damned thing to worry about.

 

As Annie Lamott says, “Life is just too goddamn lifey sometimes.”

 

Despite my gratitude for it having saved my life, when I’m immersed in the medical world, I all too easily fall into fear of the statistics.  I know the docs don’t really intend to scare you (at least not the ones I’ve dealt with), and I realize they have seen all the worst-case scenarios played out.  And I suppose it’s better that they do inform you, unlike the old days when the truth was so often hidden from patients.  But our emotional responses are not really their concern (and yes, there are still so many ways western medicine sucks). 

 

If I allow myself to live in the grip of the statistics monster, I don’t know how to have a decent life with whatever time I have left.  And right now my life is way more than decent, despite cancer, the pandemic, climate collapse and political chaos.  I have a loving family, a good home, healthy food, poems to write, communities to be part of, and that medical care that I’m complaining about.  And I don’t live in a war zone.

 

So, after dealing with all the doctors in their stark white, intimidating and impersonal exam rooms, I have to spend a few days shaking off the fears and the statistics.  It’s not easy.  I wish I were the kind of person who can more easily shrug things off and move on.  Before I had a life-threatening diagnosis, I didn’t have a clue about what life is like for those who have.  Now I know.  Let’s just say, it’s a lot to come to terms with and I hope you never have the experience.  I’m not writing this so you will feel sorry for me.  You have your own bag of worries to carry around.  But writing is something I do to help me let go of the fear.  I debated about sending it to you, but I decided that it could help (me, if not you) to give you a glimpse into my world, into my lifey life.  I don’t know about you, but I do appreciate hearing about what is really, truly going on in my friends’ lives and struggles.  Maybe you do, too.  No point in hiding, is there?

 

I do feel determined to not let these situations run me.  I would dearly love to turn my attention outward and away from myself.   

 

Here’s the poem that is part of my banishing the statistics demons:

 

Victimized by Statistics

 

The news is good,

I tell myself.

Free and clear for

three more months.

Then I enter

one of those horrid

little white rooms

where I am only

another statistic

waiting to tally.

My relief drains away

under the palpating

hands, and I shrink into

an uneasy and smaller

version of myself.

True, they royally grant

me my reprieve, but

along with it comes

instructions to be

vigilant and wary.

As if I needed

one more dose

of fear. As if

there is paltry hope

beyond their statistics.

As if it is of no concern

that once again

I feel like a

ticking time bomb.

 

 

After writing this, I decided to take one more step in healing this situation.  so, I made a SoulCollage® card that is about moving beyond being a victim of the statistics.  Here it is:

 

  Sorry for the repetition for those who read this on CaringBridge.

A New Poem: Auspicious

My heart stutters,

skips beats,

thumps hard

in the night,

each random

incident an

unsettling shock.

So, I take my heart

out to the sky

and the birds.

We fly in unison,

a murmuration,

then perch atop

a tall pine.

Here we have an

expansive view, a

vista of unparalleled

perspective.

From out of the ethers

flies an awareness

like a divination -

My heart, most wise

and trustworthy, is

struggling to beat

in rhythm with

the heartbeat

of the world.

It would be foolish

not to see this

as auspicious.

It would be reckless

to discount the gifts

of avian intelligence

and to ignore the way

the hearts of birds

pulse together

and in rhythm with

the heartbeat

of the world.

SoulCollage® card: Auspicious

A New Poem: Look Beyond the Trees

 This is one of a number of sky poems I've written in the last few years.

 

The sky is

my touchstone.

What lies beyond

the trees and

the white bird’s flight

is the origin

of oracles.

Sailing clouds.

Pink dawns.

Red sunsets.

The sun

breaking through

the clouds –

or not.

Mist obscuring

the hills –

or not.

Nights with constellations,

nights with the moon –

or not.

Lifting my head,

I am related

and reoriented.

Any time.

Any place.

Message received.

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Crazy Hair

When it first came back, the top front was the last to appear.  The little caps I had worn for nine months – red, lavender, blue, black - stayed on my head, keeping me warm, but more so hiding what to my mind was ugliness and the sign of my disease.  

The pounds came back, too, slowly, just as the hair did.

When the caps came off, people complimented me on my appearance and asked if I would keep my hair short.  Now, I have hated having short hair ever since high school when my unskilled or clueless hairdresser said, “You’ll never have long hair.  It’s too wavy and unruly.”  A tall girl, I felt my short wavy hair was not only unattractive, but also made me look pin-headed.  And so, in college, despite the pronouncement, I grew my hair almost to my waist.  Hippie hair was long hair, and I wanted it.  The weight of it pulled out the frizz and the curl.

 

After that, when I got rid of the long hair, what I got was "big hair." It wasn’t until mid-life that I learned about a method for cutting curly hair that left me without a big, frizzy head, and with receiving frequent compliments for my luxurious, controlled waves.

 

After two sessions of chemo, I had to have my family snip off my locks.  My daughter-in-law stepped in to help.  After I got tired of seeing short hairs all over the place, I asked my son to shave my head.  Bald.  Months and months of baldness.  Some women pull off bald heads with dignity and flair.  I was not one of them, especially with my newly gaunt face and tired eyes.

 

Chemo can be soul-killing in addition to being cancer-killing.

 

But for now, at least, that time is over.  My hair continues to grow, curlier than before, and wilder.  I don’t know what will happen with it, just as I don’t know what else my poor beleaguered body will have to deal with.  There’s not much I can do with crazy hair now, except appreciate having it and watching it grow.

 

The things we take for granted… It’s hair!  On my head!  And other places, too!

A New Poem: Patterns

 We are so fortunate to be in Hawaii long enough to get into a rhythm of daily life.  Such a gift to be here, and doing very little!

We settle in.

Morning rituals:

his walks, my writing,

daily divinations,

small offerings to

earth and sky.

Afternoon tea.

Sunsets.

Evening movies.

These are the patterns

we develop and

rest into, the rhythms

of the day.

There is comfort

in the consistency,

even knowing that

safety is nonsense.

Still, there is value

in the comfort of repetition,

as long as we do not

take any of it for granted,

as long as we know that

the security offered

by patterns is a treasure

of this moment only.

 We're in Hawaii, very close to Kealakekua Bay.  Much gratitude to our friends who sent us here.  This new poem is called A Beginning.

The dolphin pod swims into the bay

in the early morning.

A rainbow arcs across

the dawning sky.

The ocean is calm,

the air heavy.

This is a time of transition,

a liminal time in a liminal place.

It Is not meant for you

to be comfortable.

It is not for you only

to take and receive.

Offerings must be made.

Only an exchange is worthy

of the seeker.

Where the clouds touch the sea,

where the fire meets the water,

where the rocks climb to the heavens,

there you will find

what you are looking for.

There you will be made whole,

there, when you give yourself

away.

Godforsaken: A New Poem

 I just had a delightful time sharing poems with a friend, sitting on our deck.  After reading this one to her I decided maybe I could put it out a little further into the world.

Who would blame the gods 

for forsaking us now, 

given what we have done 

to what was bequeathed to us?

Yet I feel their presence, the old gods, 

the ones here at the beginning.

I sense them watching and waiting,

still filling the air with presence,

still charging the earth with fertility,

despite our efforts to poison them 

and the waters as well.

Only fire is uncorrupted, 

breaking out here and there

in the overwhelming heat 

of unnatural summers.

But its intent to cleanse 

rages out of control,

and the winds rise 

to fan the flames and

to whip storms into 

a frenzy over the seas.

Is there still time for us 

to reverse course,

to remember the gods 

of the earth and the sky,

the depths both below and above?

I want to cry out, “I won’t forsake you, 

gods of our ancestors, goddesses of my heart! 

I will honor the ancestral and the sacred.”

Maybe they will hear me, but I do not expect

them to intervene in our debacle.

It is up to us to adhere to the teachings 

that we scrabble and scratch to unearth 

below the glittering surface 

we have been taught to sanctify.

Like Rachel, I will keep my teraphim, 

my household gods, and worship 

what they stand for and embody.

What is holy is holy.

The least I can do 

is not abandon 

what I know to be true,

SoulCollage® card with my own teraphim