On Fire

Bury me amongst the trees

Where redwoods overlook the sea

From atop a crossed mountain

Where my body will quicken

From flesh into sand.

Underneath the needle-bed

Blanket, the fibers of my hair weave

A way through the wind-filled leaves.

Heat my voice with borrowed sun

Which once kissed my cheeks

Where freckles reached to meet.

You now hear my broken chords

Faintly in the the distance unmoored

Tasting the salted shore. Safely clean

I lay down on a million fine grains of sand

Not feeling myself again I repeat

To no one: I am an empty vessel.

I’ll still wake every morning

Habitually, my hands still sleep

Parting the fitted sheets aways,

Long gone I still reach after you.

I am the water, then the dew

Maturing into a pinguid mist.

The palms clap and sway to

Conduct the band at noon

To play a song of our bequest.

The hour’s imminent.

Time to ride a wicked dream on

A silk weaved carpet twisted

With last night’s ghostly breath.

Come take inventory of my remains

Should the tree mark me no more.

The lumber that’s become of me

Taken over by the shore. I am a house

Now – shelter for a family to whom you

Lost me once again. My soul holds up

The walls now, my legs hammered

Into floorboards, arms encircle

Each bedroom where the dormers rest.

My fingers lace together to build

A painted white front porch,

That’s my hips now a swing

Hung there, under the eaves.

Look up to see my head holds high

A roof; my back’s now the front door

My eyes frame All the windows, my heart beats

In the kitchen. My birds left the

Forest knowing where my mouth now sings

And the woodpecker that lived inside my trunk

Hollowed out my attic in the spring.

Let me stand strong and steady

For at least a hundred years.

By then, long gone, you built your own

And our lives live on, unworldly yet eternally.

Looking down at the rubble of what’s

Left of my body in the demolition heap.

What at all might grow from me who once

You buried underneath a tree?

Let me now burn someone’s hands

Someone lit afire from my plight.

It’s cold outside where I once stood

In the trees and dark of night

And I’ll burn vast and luminous

My spirit gives newborn light.

And then there’s my cancer…

We never know how high we are
Until we are asked to rise
And then if we are true to form
Our statures touch the skies

  • Emily Dickinson from poem 1176

Happiness: an illusive inner state to those of us with terminal illnesses. Each happy moment rolls into the next, yet we drive through life on a road with potholes and speed bumps as a reminder that we better slow down and enjoy it while we have this chance. To be sure, each and every waking morning opens the curtains on a new chance to grab at the brass ring, that for us is coveted yet covered in Vaseline. The ring slips from our hand as we ride by. The horse we ride runs free with us on its back, hand filled with the shadow of oil from our attempt at forgetting for a single day that this might very well be our last.

As finding our dream house should make for a feeling of joy at the real chance of building a fantasy foundation for our new beginning, I still well up with tears when I’m alone. Amazingly we have experienced much joy, having moved from the angry, traffic snarled, polluted San Jose to the clean, kind, and friendly cradle of the Sierra mountain foothills. Put that together with finding a home to put down roots permanently and you’d think – what does she have to complain about? Believe me, I’m not complaining one iota. It’s simply that the bittersweetness of biting into such a red delicious apple knowing it’s laced with poison that will kill me sooner, or I hope, later, covers my heart with a dark vail of sadness. I may not be here to enjoy the fruits of the seeds we planted and have cared for such a long time now.

We tended to our garden most recently with the difficulty of the move itself and over many years seeing my beloved finally pull out of his depression. So much to look forward to, so much love in this very moment in time to be grateful for.

Then there’s my cancer.

Making plans to switch oncology teams, making sure we’re in as clean of a house with the very best infrastructure in which we can invest – things like low to no VOC paints and bamboo wood floors – we’ve found an opportunity to live by the anti-cancer book. Complete with new friendships and a very cancer-supportive community this is certainly what appears as one of the four noble truths: nirvana. I’m finding a certain lack of suffering here. To me, who’s always lived by the old cliche the grass is always greener and finding some level of happiness wherever I am, this time of my life comes as something of a surprise to me.

And then there’s my cancer.

I’m reaching out for an exacting of equanimity here. A balance of sadness and happiness. Where suffering becomes the background or the shadow and joy comes forward to the forefront and into the light. It’s so hard. That’s all the language I can use to look for a way to achieve balance of taking care of my physical and emotional heath while not focusing on it. I can liken it to taking a photo of a sunset when you’ve got a person standing in front of the camera lens. I can see the colors blazing in the distance but there’s a big dark presence preventing me from taking in all that beauty.

Because there’s the cancer right in the way.

I hide it well. Sometimes my beloved asks if something is wrong or if I’m angry with him. No honey I’m not. I’m happier with our relationship than any other time in our 12+ years together or any romantic relationship I’ve been in my entire life.

It’s just the cancer getting in my way again.

Here’s a poem I wrote a few weeks ago as my weekly blog bonus. I love the theme of it – it’s tangentially akin to the theme of this blog post. On that note here’s:

Cold Love

Would I be if born a snake
Or bee, or clam, or fish?
Leg less, bloodless, and cold blooded
A thing without future or past.
Without arms to hold us
How do they establish a child’s
First love? Without sounds
Without syllables, no words to wound
With no hands to slap cheeks for the tears?
No false devotion to express and
No arms to commit forged emotion.
Did god know we needed belief?
Maybe words and hands on the end of arms
Beat us to the punch?

Whose guilty fingers purge my throat
To say nothing of love’s remorse.
Outstretched, sewn, and quilted
Receiving dubious mistrust
And soiled gifts of healing.
Arms holding light to beseech me
The creatures run back to the wooded wild.
Any path dark and clouded
Covered with leaves compacted
By nights grand mothers who sneak
By and slither away with our soundless cries
Morays silently drift in shallows,
The pecks of grounded wild turkeys,
The opinions of poisonous black widows
All mothers in the dark shadows of sea, of land, and of twine
Wait to hold their young somehow.
They give what’s needed and then take away
Without a word to convey their warnings.
Compliantly we wait at the forest edge
Huddled alone and cold until
Tonight tar black and frightening
Clears away in the dim light of morning.

A Metastatic Cancer Vacation

I know I’m fooling myself to believe that there’s any real break from metastatic cancer. I know that there’s no mandatory, compulsory vacation days in this new, completely abnormal lifelong career of metastatic cancer. However I recently made some decisions that take into account the enormous amount of energy cancer requires – physically, emotionally, and spiritually. Vacations really don’t cut it, so larger more life shifting actions in my own case were required. No one really seems to know the root cause of cancer related fatigue. A quick search on cancer and exhaustion comes up with sites like the Mayo Clinic and the American Cancer Society stating essentially its a number of things or none at all.

Chuang Tzsu Zen Master:
“There are no fixed limits. Time does not stand still. Nothing endures. Nothing is final… He who is wise sees near and far.”

Not only can the disease in our bodies exhaust us, but the constant activity load required truly is akin to a full time job. As rare as those of us who spend a lifetime working in a career position for a single company are those who live longer than 2.5 years with Metastatic Breast Cancer.Just the mere thought of it requires a nap. Be right back after I rest by eyes and grab a cup of fresh ginger tea.

Recently, my response to finding the energy to continue to live under current conditions and current cancer activity load is sheer exhaustion. Approaching five years de novo diagnosis I’m simply tired. Tired to the soul level. And like with a 9 to 5 job the associated tasks must be prioritized and checked off of an activity list. I knew things weren’t getting done as everything required both for life in general and for my cancer life.

Prior to about four weeks ago my list of to-dos stayed exactly the same for more more time than many things had to be completed. Many of the items on my list needed immediate tending but I just could not bring myself to finish. Simple things like phone calls to schedule appointments with my current Stanford oncologists and others to insure that my new team at UCSF was all ready transition me smoothly. My prescriptions and insurance needed tending to and my shots needed appointments. The level of procrastination simply outweighed the need. And I was creating huge problems for myself through simple denial.

I made one radical decision – to move away from the polluted, overcrowded, downright mean city of San Jose to the winding rivers and tree cover in the foothills of the Sierra mountains. We are currently in an Airbnb house half way through the three weeks we must spend waiting to close on our dream home. We are thinking of it as a mini vacation of sorts as we make circles around our new hometown. It’s a place I’ve only had daydreams of; the kind of place where friendships can spark over common interests. It’s for people who don’t mind letting others merge into traffic and tailgating is left to football game parties not for aggressive angry drivers trying to connect their bumper to your back fender.

I also made a very big decision to leave my beloved and take the available spot for a cancer retreat. I did this with guilt in tow as I left at 5 in the morning to drive north for my second week in two years at the Commonweal Cancer Help Program. I left my dear one with the last of the packing and clean up of our sold townhouse. I was on the fence about leaving him with my cat and the last of our possessions until the very last minute. See my previous post to understand why I so desperately needed to go. But it did far more than that. I’m convinced it saved my life.

Sand tray was the very last activity before I hit the road to meet him up in the area of our soon to be house and here’s the result of mine:

Said Prince Hamlet, “For there is nothing either good or bad, but thinking makes it so.”

I was indeed ready for a week of cleansing in every way. I landed exactly where I needed at a time of high volume stressors. And there’s no discounting the importance of getting away and feeling the safety of being held without guilt In the arms and the security of real love. All this from the dedication of people who helped small groups of eight people affected by cancer for over 30 years. Together they create a peaceful environment to learn about myself and get to the root causes of my cancer.

I came back with important learnings about myself and about self care. Alas I haven’t the foggiest why I stayed off technology for over a week after returning to the real world, perhaps the wandering duo and Simon the cat settling into our final Airbnb after two prior stays, having to punt my oncologist appointment from shear exhaustion and not wanting to make a drive over 3 hrs and actually finding a house all might have a bit to do with it.

The exhaustion hasn’t completely dissipated but I’m working on learning how to not allow it to build up as it had. It was also a creative boost I needed and I wrote about six poems in the past 10 days. I’m going to add to the end of each blog post a poem as a way to give the true inner space of my thinking and of my creativity. Here’s one I wrote and read to the group of leadership at Commonweal. I hope you like it as much as they do:

Why?
Why does it happen?
Because it transpired.
Why are we here?
Because we were hired.
What does this mean?
It means what’s intended.
What did you say?
You said what you meant to.
When do we go?
We’ll go when we’re dead.
What does it say?
Not a word unless read.
From where does it come?
Where everything goes.
Whom do I address?
Who really knows.
Ask any question and
expecting an answer
Is like watching a dance
without any dancers,
And the silence of an instrument
without a player.
There’s no God to question
without a prayer.
So rest your mind –
you are not your thoughts
And without your thoughts
you’re all spirit and heart.

“You look great.”

Walking up to my weatherproof face
Say, “you look great,”
(With the implied italics on the great.)
My invalidly clear skin,
Such wise wild eyes,
Naturally open up wide,
Wow, you look great!“

Could you spare a surprise?
Shuddering at the danger of such a storm
Surging through my veins like an impulse
Holding back the invisible force
As you to recoiled.

Do you recall the dress I wore that pink afternoon?

How I make lemonade from such a sour fruit?
I don’t think
About my v-neck or recall how I flowed by you
Last time we met.
Unlucky chance as
Circumstances,
Uncomfortable yet innocuous. Maybe
A mall or a supermarket?
In an aisle with its Chia seeds, with its quinoa,
With its turmeric or with its masala, or with its free green tea?
Did you try some new found red fruit
Ubiquitous and misspelled as often as the word misspell.
Say it again:

You look so shocked that we must do lunch.
Face red over the menu
Its dishes unpronounceable.
Those one named joints like Spoon or Fork.
Those restaurants where everything on the list you exclaim and pronounce, expertly.

If it came down to the question of my looks,
Would you reply
Without gratitude:
Why thank you
How graciously
Oh, you’re too kind.
Leave for home alone
And cry.

Or ask me
“why do you ask me?”

As though you were the sick one.
Overrun with a malady,
Melodiously, waltzing to
A “thank you” with a sing song voice,
High and staccato
But sad sad
Ever sad.
Rememorys of quotes,
Remember me?
Reaffirming how strong, how beautiful, how positive?
Stop – the compliments overflow in my former cups.
How good do I really Iook?
Is it true or
The way shock looks good on you?
How good does it look not to be sick?
Not to lose?
I want to win the rights
to own my identity.
The right to keep my hair.
“You kept your hair!
How wonderful.“
I look fabulous.
Would you recoil if I retorted
Or chortled,
Out of some joke at the expense of your boundaries?
Your fence affronted
Laughing nervously
At my acerbic wit.
To whit without bullshit.
You commend me for my strength.

And then worse than all the worlds’ compliments:
“I’ll pray for you.”
As god walks away to hit the drugstore
Along the weathered path home
No kneeling at the counter of
Optimal opioids and malcontents.

So, gaze inside every
mirror
Each shop window along your route.
Let the looking glass take you to the other side.
Take a snapshot of yourself inside
After the infusion.
It’s not permitted by punishment
By law.
By transdermal
By transplant
By subcutaneous injections
By contrast
To you
I do look great.