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

2 thoughts on “Rantings of a Metastatic Lunatic

  1. Dear Ilene,
    Your writings … give me strength, peace and hope … knowing I am not alone. Thank you for sharing your gift … writings from the heart.

    I continue to hope for a cure.
    -Liesl

    1. You give me the encouragement I need to keep up the blog. It’s so difficult at times to live with this disease, with someone who has depression, and deciding what to do first…writing’s therapeutic for me and knowing it makes a small difference in someone’s life makes it even more so. 💜 Ilene
      And I hope for a cure and participate in studios so that even if I’m no longer here to benefit, others will.

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