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.

Rantings of a Metastatic Lunatic

Writing, for those of us who dare call ourselves writers, prolific or sporadic, come to find satisfaction in the act itself. Not that praise and recognition aren’t wonderful, because our insecurities tend to coexist with our capabilities. Admittedly, a cancer diagnosis nearly four years ago relit the fire that once burned in my brain to put pen to paper. Let me caveat my last statement: that is, once I forgave myself for feeling afraid of calling myself a writer. I am a writer today, in no small part due to one person, Michael Lerner a co-founder of the Cancer Help Program (CHP) at Commonweal in coastal Northern California.* Immediately finding common ground in our backgrounds, I looked forward to my personal sessions with Michael.

I admire people who wrote and had published books as well, knowing what a gargantuan task it is indeed, whether fiction or non-fiction. Michael also wrote an encompassing book on cancer adjunct and non-traditional therapies called “Choices in Healing.” Pick up a copy if you can; it’s still very relevant 20 years post initial publication. In a session I had one on one with Michael, he asked a simple question, “why don’t you call yourself what you are? A writer.” So one word changed my attitude with regards to a long held fear that perhaps my writing didn’t merit giving myself the title of writer.

From which neuroses did this fear grow from and how do I continue to kill the weeds before they take over the fertile garden of my mind? Does fear fertilize the same physical mutations in which cancer grows best? Maybe these connections strengthen or weaken our immunity to pain and illnesses. I’ve come to believe there’s no such thing as a mind-body connection, because the mind (in my mind) is the body and the body is the mind. There’s no schism that separates the two, not even the blood brain barrier.

I wrote my first poem before the age of six. In 1971, before dad left us for another family he’d fallen in love with, I recall sitting on the radiator in our apartment in New York watching the snow fall in the playground outside 16 stories down with the swings bucket seats silently hiding undercover in white dust. Even then I walked around with a notebook, and I remember a feeling wash over me that afternoon as the sun sunk lower and the snow continued piling up risking the next mornings announcement of a snow day from school. Warming myself on a pillow atop the clanging coil of pipes, I put pencil to paper I wrote a two stanza a/b rhyme scheme piece entitled “What it is for You and Me.”

Giving it to my mother for her birthday that year when she turned 31 that she kept and gave to me many years later, sometime prior to succumbing to dementia at 74. It’s a wonderful gift to receive all those years later as a reminder of who we intrinsically are as human beings. I’m amazed at how many memories come flooding into the brain from some unseen place when such wonderful events transpire between us.

The Glymphatic System

Recently scientists discovered that lymphatic drainage does occur for the brain, whisking away waste and toxins as well as infections. The system aka glymphatic system links to the body’s lymphatic system near the cervical bones of the neck. Unbeknownst to anyone is the existence of lymphatic drains on the brain – heretofore unseen and just discovered in 2015. All except one exceedingly smart doctor practicing in the 19th century whose research was long forgotten, prior to the 2015 study run by researchers funded by the National Institute of Health and the National Cancer Institute. A specialized highway like the blood stream and the lymphatic system exists in the brain.

And my mother passing away from the ravages of Alzheimer’s are directly related in no small part to the breakdown of this system. Perhaps even my own disease has a direct correlation as well. It’s all in our heads anyway. The act of writing, fear, doubt, distress, anxiety, chemo brain, dementia, Alzheimer’s, cancer. All of it.

And how this all ties back to metastatic breast cancer you may ask? Well, I may be an okay writer but I’m no scientist. I do love the occasional research paper as it may relate to my disease or to some astronomy discovery. But it’s fairly clear to me why the NCI funded the study. Especially if indeed there’s no difference between the mind and the body but instead they’re one entity codependent upon one another for life support. You can draw your own conclusions based on the breadcrumbs of interest left here to follow. And this fits nicely with my spiritual belief that the consciousness is the god of the body itself and somehow we go on as a soul long after the physical self has drained its last drop of brain waste.

We can organize peacefully around the idea that we ourselves can supercharge our immune systems to fend off cancer. And my truest hope is that discoveries like this one will allow me to thrive long enough to see a cure for cancer. But then again Maybe I’m just bathing in my own glymphatic waste. And perhaps calling myself a writer at this point in my life is self-delusional. But what a sweet delusion to know that my words reach others with cancer and have helped one or two people with struggles of their own.

We aren’t alone when we write and publish our personal stories. And perhaps the undiscovered territories and deep psychological insights are in some ways akin to the discovery of the glymphatic system. There’s an importance to both for humanity’s healthy survival.

*Commonweal’s CHP is a week long immersive resident group of only eight people who couldn’t be more different or the same. We go in afraid and heavy with baggage and we depart carrying fewer suitcases than we arrived with because of the amazing work of 30 years spent helping heal the souls of people with cancer and their partner-carers. If you’re metastatic check it out in an earlier blog post on this very site or at commonweal.org