Cancer: It’s all in your head

This third week of January 2021 brought about change. The one we’ve sat in our homes waiting with a national- dare I say global – collective held breath for Joe Biden and Kamala Harris to take the reigns out of the hands of a thief. After four ugly years of a petty loose cannon, from whom I hope never to see on the public’s big screen again. But hope is a fickle funny emotion. Still…

My small world, too, experienced a very strange week full of let downs and lift ups, full of mourning, and as a victim of public gaslighting in which the context did not distinguish itself until it took on a life of its own as the person exhibited classic narcissistic behaviors.I must have repressed response triggers dating from my childhood via my mother who herself had low level narcissistic personality disorder, mostly jealousy and selfishness mixed in with a sprinkle of well-hidden immaturity. We’d have celebrated her 80th birthday on the 31st had she not succumbed to Alzheimer’s.

Thick as a fog the sabotage took over the sunny afternoons in a healing circle I belonged to for the last four months. And healing happened in a very loving and kind, warm and receptive environment using Zoom. Zoom, the latest video group call application works fairly well as you can be a part of the Brady Bunch, yet with the ability to speak and with far better clothing choices. There’s no maid named Alice in a healing circle, but there’s the parallel of a kinder and gentler less misogynistic mom and dad roles in the Host and Guardian. All of this in the name of full transparency of course is available publicly through commonweal.org or Healing Circles Global. Nothing should have alerted us either since confidentiality outside of the circle is tantamount to its ability to achieve what it sets out to do.

A deluge of emails alerted me and all involved to the escalating circumstance that grew in dramatic undercurrents until I drowned in a tidal wave of someone’s need for recognition and to become the host. I was asked my preferred role – my email cc’ing everyone as requested of us basically said – either is fine, let’s see if it can keep its momentum and if not we can revisit in a few weeks. In a healing circle, each person enters a circle to be held in the loving arms of all participants. The roles of host and guardian no more and no less than having decent intuition, sharing of themselves as they choose as they’re there first and foremost for the same reason we’re all there. They also are adept in using prompts and asking questions, the guardian keeps time, and both insure there’s no cross talking or interrupting. It’s an intuitive role in that we use silence as a healing tool and to know when to call for a short one is up to everyone and anyone but that’s it. You really need to be sensitive and have a good gut for these things, I don’t purport to have either but I enjoy it and have had the fortune of some very wise women to bring out the emotional stuff that our strange days created a big bullhorn for all of our souls with Covid and being in lockdown, we need one another more than ever.

What really shook me and finally got a rise out of my emotional equanimity: she used my metastatic breast cancer against me. And of course this weighs heavy on my heart and of course comes up in my sharing. But I shall never speak for anyone’s decision to talk about what they will or whether it has a place in a healing circle or not. If I understand them correctly wherever there is healing there is a healing circle. It can be between one person and another it can be between 234 or 12. Certainly there’s a limit because time is short usually they run about 90 minutes. There’s no power plays. Everyone leads everyone helps themselves but does not try to help anybody else. We come to circle to fix only ourselves. Sadly our circle couldn’t hold as a result, and I won’t forget any of the lessons of the circle or the collapse.

It is in our heads, afterall

As the subject of this post indicates I believe cancer of all kinds – brain, breast, metastatic, inoperable, terminal – has roots in our heads. The psychosocial influences of stress on our bodies. Childhood traumas that cause fight or flight responses. The feelings of insecurity and basic need inadequacies that lead to less than fairy tale adulthood’s.

The fact is, reality of course is all in our heads. In many ways cancer is our personal reality. Cancer we know from long term studies, can be agitated from our cells into real tumors by psychological pain and suffering inflicted in childhood. In fact, listening to Breast Cancer Action’s most recent podcast, there are some incredible statistics on adverse childhood events, or ACEs and the incidence in fact is very much connected, enough to become concerned with my own health and its roots in my childhood abandonment by my father and later my mother.

In this recent January ‘21 episode, the guest, Dr. Barbara Cohn, found in her research some very compelling and statistically significant connections between emotional and environmental stressors during formative years on a woman’s propensity for breast cancer. Maybe it’s not as much in our genes but in our minds we should do a deeper analysis to find the root causes for what she found by way of looking at, for instance, women who lost both parents before the age of 21. I pulled my car over to take notes I was so dumbstruck by the evidence. Evidence that at a gut level I knew from the day of my diagnosis that my past had come full circle to try to take me down with it. Wherever my parents are now, I was surely headed too soon, but based in my reality I also felt it has as much to do with the other autoimmune physical problems that beleaguered my health from my first ulcer at 12.

In fact during my respites at the Cancer Help Program through Commonweal, through which I came to find out about Healing Circles (talk about circling the square this week!), healing our childhood psychological wounds to get to the bottom of not just the potential root causes of cancers but healing our souls to heal our bodies. This very concept is a focus of the week long cancer help program. It’s central to our life extensions as I find peace with and forgive both my parents and myself. The women who lost their parents to death I think likely mirror my own abandonment by both my parents before I turned 14. And here’s what the study found:

  • A 4 1/2 fold increase in breast density
  • A 24.5 fold increase in HER2 positive types
  • An 8.5 fold increase in de novo metastatic breast cancer

I encourage you to listen to the episode which you can find on their web site Breast Cancer Action .

My Father’s Daughter

There’s also the kind of cancer that starts in your head and will eventually kill you. The inoperable kind. The kind that my father died from 13 years ago. He would’ve been 80 today January 23, 2021. But he’s no longer here it was all in his head.

The surgeon couldn’t remove the entire tumor without encroaching on his ability to care for himself. Only able to remove half of his mitochondrial tumor my dad knew that I understood what he meant by being “unable to wipe his own ass.” I did. Yet he came out of anesthesia not in his own head. He became the antithesis of himself – mean, nasty, yelling. Everything I knew about him became moot for about two years. That was all in his head, too. My brother and father never got along well. That is before 18 hours with his skull opened up and brain exposed to the air, the penultimate in compromising the blood brain barrier.

I have a friend who taught me the differences between metastatic cancer and in operable terminal cancer. Both still can be in your head. Then there’s the kinds of things that are in your head that really bother you about having cancer. Knowing it’s in your body. Knowing in the case of MBC it can reach your brain. And Brian metastasis is one of the things that scares metsers most.Then there are the strange things about having metastatic breast cancer. It’s not wanting to tell people about your cancer or to talk too much about cancer. It’s deciding whether you want to use Twitter, or Facebook, or blog post, or Instagram, or Vlog, or any kind of social media to tell your story. Or perhaps you don’t ever publicly tell your story. That’s in your head as well for you have to determine how much you want to talk about how personally want to go and certainly how much you want other people to know.

That’s what my week was about. How much do I want other people to know?

In a support group you only hope that the environment will be, well, supportive. That the people in your group will hold your innermost hopes, fears, and dreams confidential. My confidence was broken this week. But as it turns out it was also repaired by people who truly care about my well-being. The person who broke my confidence was not a friend of mine. She was merely someone I knew that was in the support group that was called a healing circle. Healing circles are meant to be just that: when you are “in circle” you are there to see and speak what’s on your heart. What’s going on. It’s not just for cancer patients it’s for people with a beating heart -for everyone. This particular group focused on uncertainty during COVID-19. And that’s doubly difficult for people with metastatic cancer because in many of us are immune systems are in the trash. We can’t go anywhere, we can’t really see anyoneAnd it’s even difficult for us to get the treatments that we need, the life-saving treatment, the clinical trials have been canceled. But we have to stay positive don’t we?

And that’s all in our heads.

I attended a new circle today thats on writing through COVID19. We were given a list of word prompts and I chose “sanctuary” for my prompt. It  led to this raw, unedited poem. I am sharing this with you, dear readers, because at times we all must show the real self as what’s in our head and our hearts, just as it spills out onto the page. Unburdened by the need for perfection we find ourselves in the sense of what’s true and real and thus sacred. Allow no one, especially not for the sake of ego, rob you of your truth. This, as the Victor Frankl quote that touched me so deeply today and sits at the head of this blog post, is where the imperative to find deeper meaning commences. Sometimes sharing of ourselves in finding our own meaning we can join one another in finding common ground. Right now it’s as important if not more than ever to find common ground to heal our divides - between one another and within our own heads. Yes, it’s been quite a week, for me, for us, for our community. 

In each of us lives a kingdom of hope. But may no single individual or ideology become so self important as to rise to the level of a self proclaimed monarch again.


Sanctuary

My sanctuary
Our house holds all I love
Yet The door is open
For there’s always room
For more -one more, many more
Love knows no bounds
Love is my sanctuary.
My door is open
Although the world’s
Closed for now, anyway.

Every night
The owls ask who
Who are you
Who is home
Who is gone?
Every morning
The doves cry
Cooing in mourning
For those who have gone

The afternoons bring
Light casting long shadows
Through the crystals
In the heart of the home
The kitchen fills with
Tiny rainbows
Red, orange yellow, green, blue indigo, ultraviolet
Repeated and repeated
In attempts to draw for me
A time long ago
Or so it seems
That I could see the rain
Refracting the light
In the aftermath of
Storms. We’ve weathered
So many storms
Do you want to be
A new color?
Does the owl know
It’s brown and white?
Did the dove have any
Rejection of the black woodpecker
Making his way up the
Ponderosa pine
And wearing a headdress
Of a hunter?
Did she know he made her bed
Inside that tree?
If the mountain lion
Or the white tailed deer
Or my skunk, fat as he is wide
Only knew we were all so very afraid
Would they want to create
A sacred space
Or a sanctuary
Would the owl ask again
Who is it?
My doors remain wide open
Yet no one comes in
No one leaves
The spring led to fall
And we all missed the
Summer trips
We skipped the routine
And we all call in well
To work not sick for once
We are celebrating
Being well
Not a return from illness
Isn’t this the way life should be?
Cant I say it’s a beautiful day today
I’m calling in for my sanity
I’m not waiting until I lose it anymore
Can I fall on the ground
Out of breath
From dancing. My lab is
My living room my tools
The colors of the crystal
Refractions of the long
Fat rays of sun

Or so I could stand here and ask why? Why me? Why us? Why?

I prefer my owls quest to find out who I am.
I prefer the smells of the skunk
Who came to the open door
And waddles away with a bright red tomato.

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.