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.

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.

One Word Can Make All the Difference

So, there’s wonderfully good things that transpire to create a solid high of energy around us that heal. Then I think neutral stuff happens all day long like stopping at a red light. It can be a negative event if the conditions we perceive make it so: e.g. I’m late so this might make me later still; I have bad luck. Outside of all perception and control things happen all around us: environmentally, socially, scientifically, etc. We assume we have some way to partake in those events or that they conspire against us to create a negative vortex or a positive window or door to look out or step through. It’s vague. But the vagueness is very interesting isn’t it?

Perhaps you feel like cancer or disease is in some way your fault or a conspiracy of circumstances. I actually believe it’s both. In my heart I now know there preceded my cancer diagnosis events that were incredibly stressful creating a hospitality center for my cancer to take up residence in my body. It’s not my “fault.” There’s no way we can know just what dis-ease lie in wait for us except for the occasional discordances like diabetes, which is generally genetic. However that’s controllable with diet.

We live in a diseased environment that much like our bodies under stress develops dangerous conditions in which nature slowly dies. In some sense I’m glad I won’t be around to see the death of our planet as we know it. Depressing. But truth be told did we need the fluoride in our water? Did we need all that corn? Do chickens need such big breasts that they fall over? Does organic even mean without chemicals? No. None of this is true. But we are fed a body of fear to add to our newly stressed out lives and we wonder why breast cancer rates since the 1950s have increased from 1:40 to 1:8 (or 7 depending on who you ask). That’s a gigantic rate of increase in a very short period of time. And not to get too much into numbers but only 5% of cancers are genetic. Including breast cancer.

So what can we do about all this? Well I am headed back to Commonweal in Bolinas, California in two weeks to attend my second session at the Cancer Help Program. (CHP information)I’m giddy with excitement and literally cried tears of joy upon receiving the call last week. And we are in the midst of closing on our house and finally finding a new one. But it doesn’t have to be stressful. I sit in acceptance of offers of help from a professional organization expert hired for me by my realtor, with C’s assistance and the enlisting of a moving and storage company if it comes down to it. I’m not giving up the opportunity to move to a new home with my life partner and best friend to drag the same shit along buried deep in a dark box from my internal attic. No point. It wasn’t working for me before so it won’t work going forward.

The first week long program started the healing in October of 2016. But I knew I wasn’t well and wound up spending a week in the hospital upon my return. C was at the apex of his depression and there was no relief in sight. He was hospitalized about two months later as well, for his anxiety had gotten so bad that I couldn’t in good conscience watch him deny his condition any longer. A long road to healing began for us both individually and as a couple.

But something seemed really undone. Like a frayed rope or like confetti or ticker tape after a parade my mental streets need sweeping. I called one of the founders of the CHP in March hoping to get to the June week program before the summer break. Only eight people can attend. September had the right mix for me with the other seven attendees. June just didn’t play out.

I am blessed again to benefit from people I love and respect and who gave me a path to find my way to new meaning. The most profound statement of healing cane from one of my private sessions with Michael Learner, the founder of Commonweal. He said, “Ilene, why don’t you call yourself a writer? That’s what you are.” And a simple statement changed the course to bring us here. Today.

I am a writer headed back to the Cancer Help Program in two weeks. In the meantime I hope to post one more time to respond to Nancy’s Point and her Blog Hop. I feel like a bad friend but I know she understands.

I’d check out her blog if you’ve not been there yet. I love Nancy’s way of explaining the emotions and medical conditions about having cancer and losing her mom to cancer as well. Take the time to read her stuff it’s worth it. She’s also written several helpful books especially for those new to this cancer culture that you’ll welcome even if it’s old hat.

And with that I leave you with my love and my light and a gentle goodnight and a poem from Robert Frost:
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference

Childhood’s Psychic Wounds and Cancer: repression, PTSD, and my metastasis

During my two stints at Commonweal’s Cancer Help Program diving deep into the mysteries of my psyche, I stumbled into a littoral funhouse of morphed emotions. Buried deep, repressed beyond recognition were, of course my parents, old wounds of words and frightening events, memories at the depths of uncharted deep oceanic waters. Running long, those deep eddies carried pain, swirling and kicking up sand and with it the dis-ease of the mind. So, let’s agree to the mind/ body/ spirit connection baseline for the sake of brevity, and assume these are one and the same, each effecting the other in sickness and in health.

Must we look in the mirrors of our mind to see the perceptions of our pasts, looking larger or smaller or not looking at all like reality. But these memories represent reality to us. For me, a deep sharp knife to the gut looks something like me as a seven year old. I remember I stood silently watching my father leave us. Bearded and in a t-shirt and torn jeans in 1972 the 8mm reel in my head plays a film of my dad with a suitcase under each arm pulling my mother on his right ankle, dragging her across the wood floor of the foyer to the heavy three lock door to our high rise apartment in New York. She yelled, crying, “you can’t leave me alone with these two kids!” And with that he kicked her arms loose and slammed the door. I ran to find him – to go with him – but the elevator had whisked him away to his new life with another woman and her infant son.

Years later after my father died in 2013, I found saccharine love letters and poems to this woman. Her son, now who would be reared on and off by my father who, to hurt his own father, liked to date women of color. I will not quote the letters of my grandfather to him asking him to go home to his family and leave the other so and so woman behind him, all would be forgotten. But poppa, for all your work on our behalf, we remained as “those kids” with my mother. Well, sort of.

I unfortunately became the de facto cook, housekeeper, babysitter of my brother three years my junior, after my mother moved us to Florida about a year or so later. She sold off our possessions. She even gave away my dog without so much as a warning to her sister’s housekeeper. She took Peaches a curly blonde small poodle in her soft large brown hands and off went my pet. I never had a dog again. At least not one I got to keep. I’ve always had cats. I suppose it was my way of subverting my mother’s desire to not have a high maintenance pet. Like children were high maintenance to her. Things to jettison when something better finally came along.

My father would later confess he wasn’t planned and my father was content with one child. Me. The planned one. Although I wasn’t born male – I was supposed to do the right thing and come into the world as Isaac not Ilene. However my mother wouldn’t hear his need to rear a single person to adulthood. He had 102 degree fever when my brother was conceived, and he blamed my siblings lack of intellectual prowess on his “sick sperm.” I kid you not.

It did not take her long to find my stepfather who hadn’t enough room for both of us. At 13 my mother moved her things into his house about four long miles from where we lived at the time. I was to tell no one. When my grandmother called, I was to tell her mom would call right back and immediately call her at my stepfather’s house. She will then call whomever called and talk to them as though she was calling from our home. She wasn’t there clearly. This went on for about a year and I watched my brother cooked cleaned and try to go to school as best as I could. But at 14 years old it’s kind of hard to do those things as we are not trained yet. But I was expected to do those things since I was seven years old and so I had about amount of experience by then. Experience no kid should really help.

About a year later, she took my brother with her. She left me there in a house with three bedrooms and a kitchen or living room I don’t have room two bathrooms and very little money. She paid, I recall, about a quarter of the rent and told me to get a roommate and a job. It’s hard to get a job at 14, however, when you’re almost 6 feet tall you can say you’re 18 and everyone will believe you. There was no way to get to school every day and immediately I went from honors student to failure, overnight. No one took notice; I was from a broken home so I failed in those days as was to be expected.

These are the wounds that don’t heal. These are the ones that stay with us for life. These are the events that cause insecurity, worry, stress, give us pause when getting into relationships, grow into those daemons which possess us, the goblins that never, ever die. At least not until we ourselves expire.

Courses of cognitive behavioral therapy over years have improved my mental stability allowing me to succeed in my life. I swore that I would not be a failure. I swear that to myself at 14 or 18 and a 24. I swear that to myself when I said I would be the CEO of a company by the time I was 45. I swear that to myself when I graduated university against everybody’s expectations.

And I swore that to myself when I was diagnosed with metastatic breast cancer. I would not be an early statistic, I said to myself. I would be an outlier. I’m going on five years now. And I suppose I am an outlier in a lot of ways. No one expected me to be alive now, not even my oncologist. And no one expected me to succeed either. Not even my parents.

I still definitely have issues with insecurity and with loss. I have an exceedingly difficult time with the telephone. I hate making phone calls as a result of those years of calling my father on behalf of my mother, and calling my mother to let her know so and so called and to call them back. Oddly, my brother did not tell me when my mother died, and we’d repaired our broken relationship years ago. Still he worried something would surface of that painful time making him look badly in front of my relatives. If any of you are reading this, that’s why you did not see me at the funeral. My aunt, brother and stepsister had determined it unnecessary for some reason.

No closure. No way to say goodbye for either of us. I’ll go to my death with that pain, too. But burying it deep I’ll argue, helps drive the diseases we suffer from including cancer. Our cellular structure can only handle so much psychological poisoning. Do any of you reading with cancer also suffer such deep wounds?

During the cancer whole program we talked about those things those deep wounds those things that don’t heal and getting rid of them somehow someway or at least making peace with ourselves so that we can heal her body is by healing or minds in her spirits. I believe that I’ve healed to a certain degree but I don’t think we have a really truly do get over these things. They’re too difficult and too hurtful and too sad. I miss my parents though they were not perfect and they did not know what they were doing at 25 when they heard me, nor at 28 when my brother was born.

However they did have time to mature but unfortunately they did not have time to grow up. I believe that I have and why I have survived as long as I have with the cancer that will not leave my body. On treatments that I will continue for the rest of my life. And if there is a heaven and I’m fairly certain that there isn’t, but if there is and they’re around, I hope I get to get some closure with them.

The poem below you’ll see some reflections of this and I hope you enjoy it. It’s slightly sad (but don’t worry the kittens get saved. 😄)

The Litter

Dark blue visions cloak the fight
Pink cheeky girls awakened
yawning at alleyway screams.
Just a caterwauling stray, they whisper,
slipping comfortablyinto their black
silken dreams
between rose petal pink sheets
curled up like kittens
kneading blindly into biscuits
dreaming of jasmine tea.

Another innocent mother who
never knew what to do:
incessantly they mew and cry
feed me groom me love me
choose me.
With her tongue like a steak knife
she cuts fleas and mites
from their new sprouted down.
Soft mews steal the silence,
Feeling their shark tooth claws —
Then the motor and telescoping
headlight beams
shock and scatter her over
around a green, greedy lawn
finally hiding under my bungalow porch.

Victims all, we find relief
in our own reflections.
In ponds and puddles seeing
All the glitter of fool’s gold.
Plates of glass form our images
As ghostly creatures in the dark,
Lights obscure the windows
From a daytime world view into a
Nighttime curtained off.
Framed into a single clean
picture of a solitary face –
Outside…pressing.
Mother’s never return
if they’ve run.
Now I help but fear
like anyone of us
they find a home?

Do the coats we wear
cover our wealth
from the pickpockets and the poor.
All of us victims
Our own voices crying in prayer
for peace, for pacification
for food, for mothers, for the one.
Saving anyone.