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

Blogging for My Life

Fast. Faster. Gone in a moment. Sometimes before we realize how much faster cancer cells move than our bodies can fend off. We look in the mirror and watch our faces change. We feel our skin and it feels as though it’s not our own. Our breasts change in size, shape, and functional capabilities. Instead of life giving joyous appendages they’ve become hired guns out to kill the very support system for which they once worked. Some of us never had the joy of motherhood bestowed upon us by nature’s design. And that’s okay because we still, as women, must become the bringers of life to those we love. Our purposes shift but not without our reason d’etres in tow.

Eventually we all know our consciousness ends and the world we lived in becomes one in which our deaths are survived by those who once cohabitated and collaborated in it beside us. I refer to all of those who share in our experience either in person or now, those who live virtually close to us and some of whom equal in importance for our lives to ease down slowly when the dying of the body disallows physical contact for varying degrees of importance in reason. We show love and support regardless of the miles of distance between our physical selves. How fortunate to be alive in the networked age of innocence? Insouciance isn’t an option here because in matters of life and death the difference is so great that indifference would become a criminal act against humanity. And I’m not being tongue in cheek. It’s truly that important to the isolated percentage of us with cancers that have gone rogue in our bodies. The 30% of the 40% who have had cancer in the past. Then those like me who “present” right at the stage of the spread from an originating tumor. It’s not our fault. It’s not karmic retribution. It’s 90% environmental and 10% genetic and we never saw the bus coming before it hit us.

We share our inner most selves here. The kind of personal stories once so tightly held to the vest we wouldn’t share them with our best friends sometimes. And yet here we splay ourselves out with words rather than looks or hugs or facial expressions of joy or pain. Yet we have the protection of how much we allow out into the privately public eye, and feel more secure as people become friends who we absolutely love and appreciate as we would a friend who lives within driving distance.

Given this caveat: ours is a false senses of security since that security really is just a matter of how much or how little we are willing to share of our own story. Albeit our stories are without the input of those of whom we may speak, of those who saved us, made us happy, and loved us. In addition we may choose to relate our devastation over those who hurt us, make us feel shitty, or something as bad as making us so upset we would rather lose consciousness than get metaphorically beaten down towards the bottom of of some common unknown. In the instant we publish ourselves in a blog post we open ourselves up to scrutiny fearlessly hoping for understanding and love in response to our cries and laughter to our humorous rants.

In our most intimate and interesting posts we open up like bodies under the sharp knives of a small town morgue’s medical examiner. We let the light shine right near our dearest most personal stories under the eyes of people who need to know we are out here for reasons of solidarity around the topics of cancer, dying, and death. That last post on my blog may be by the very person who I talk about who could not handle watching my life slip away and who treated me like shit because out of love they couldn’t find a way home again from the hospital to be by our sides through the most difficult things we’ve ever been through.

The death of me isn’t the true death of my story anymore left to those who outlived me to tell anymore. Better yet, even after I’ve lost physical consciousness my stories can help those who get even better medicines than were available to me to learn what it meant to have metastatic cancer prior to the breakthrough that saved them but missed me and others like me by a few years, months or worse, days. Here’s what it used to look like to walk in these shoes when our diagnosis of stage IV is a death sentence. A perpetual march to the surge of tests and chemicals until no more can extend our life anymore and we must enter the limbo state if not knowing quite how long our bodies can contain the faster growing cancer cells.

The living go on as we go to sleep and one day our consciousness doesn’t return from rest. It’s in the spaces between existing and not existing where we live all the time. It never leaves – “it” meaning the knowing our mortality before we reach the finish line. Every day actions and activities once just ordinary become extraordinary. Our bodies are not ourselves but become the very enemies we dread in a dark alley alone at night facing down an armed assassin. Though it’s certainly been a frightening place to live for so long now, I’ll take it over not seeing another black calla lily or great redwood tree. I’d take that alley fight over never feeling a real hug again or the warmth of a body – friend or lover – as you sit comfortably next to one another critiquing a film’s bad editing or gasping at the sounds of a commonly loved piece of music.

I cannot believe all of us are here now – reading each other and loving each other and opening and closing like the rains hands in the ee cumming’s poem. No one not even the rain has such small hands. No wonder it resonates with so many people in love. There’s a universally understood unknown that makes no sense yet makes all the sense in the world.

And by god I know if you’re reading this you know exactly what I mean.

All my love,

Ilene

I Asked

I’m afraid. Not that it’s a good sign for anyone but ascites isn’t a good sign for me – it’s my internal alarm system letting me know my cancer is badly misbehaving. My stress load had gone up and skyrocketed for reasons I don’t yet fully understand. My physical “self” sent a flair up to alert me that I had to make some dramatic changes. I knew. But what‘s holding me back and why had I allowed it to continue for so long? I’m not sure I need to define what the “it” is, but it is definitely the 11th hour and I could feel it. Change or die.

On and off I’d been in the hospital since thanksgiving 2018. Roughly the same time as last year once I’d returned from the Commonweal Cancer Help Program. Looking back in that period with the clarity of hindsight, my need to feel loved and approved of by my partner upon returning from the CHP, and by wanting to transform him and his depression, then going into year three. At Commonweal, in the loving-care of people who needed no invitations to a hug, I’d neglected myself again. How the hell did I do that this time and at what level of self exploration did I need to sink into to find the answer to that mystery is as unknown as a good Agatha Christie Poirot mystery.

I suppose to show him somehow he could do it too, he could find clarity within an almost unbearable situation and even find answers to fundamental human questions plaguing him all his life. I’m a firebrand of calmness. Oxymoronic yet I’m so excited to share everything. My excitement caused him to draw further away for the last time. I’d never really see him again after that. Perhaps he’d lost me and not vice versa. But we could have gone together to the program, and I know if he’d tried we’d be a vastly different couple than we are. But here I find myself: sick, alone, afraid, and as all cancer patients eventually find themselves unable to financially support myself.

In all I’d learned I’d still not fully understood that unless I helped myself to health, I’d not live to see my own gifts fully realized. (Protected gifts by the light around me and had been given as a mandate that I did not carry forward as I was gently blessed and nudged towards about three years ago – more in a later chapter on this story.)

I asked him a serious question around 2:00 am December 15th one day out of Stanford hospital and a first round of Taxol:
Are you in this with me?
Yes.
I mean changes have to be made – I must or my life hangs in the balance.
It always does (snidely) just nock it off please.
Craig I’m serious this is serious.
Whatever.
No it’s not “whatever,” it’s my life.
Oh, just shut up.
No I won’t shut up and you mustn’t speak to me that way.
I won’t speak to you then.
That’s not what I meant and you know it.
As you wish.
What?
As you wish.
I wish you were in this with me it could help you, too.
Just go to sleep.

The word whatever should be struck from every dictionary of human language as it evokes apathy and strips bare the spirits of its joy or at the least enjoyment. I’m not talking, “which sushi restaurant?” “Oh, whatever is on your way home honey.” That’s a perfectly acceptable answer. I hope my need to explain myself to the level of granularity of a tight shot in a David Lynch movie as my own self esteem begins to heal as so often his characters do not. There’s no great redemption in over explication, which simply takes a conversation and mangles a cogent discussion creating an active diversion and leaving one scratching their head over how they wound up in an unrecognizable blathering. Of course it’s easy then to say “whatever.”

Something had just snapped in me and I know if I throw myself into the world something will happen. I will die here in every possible way, but out there I can be saved. I believe that now more than ever. After I woke up yet again to an empty bed, even I can see the required ingredients to form the semblance of a relationship are probably unavailable.

It’s myself – not him – who’s keeping me in this carcinogenic hell where I live on Carrington circle (circle! The irony had escaped me until that moment). I can make a choice to carry on with optimizing my mind, body, and spirit for LIVING or I will die running around a circle of things that never change.

I began reading “Anti-Cancer.” Just having read a paragraph regarding ascites in mice and the case of a Mighty Mouse had pulled my brain out of a fog. It scared me to the point of nausea. I’m going to have to find love, patience, nutrition, a living situation, and give for the sake of my life. The gift was mine to throw away or get busy saving.

Now this is clear as anything had been before. It was time to reload my arsenal and wake up.

I will pray for you

If I hear you say, “I’ll pray for you,” I’d like to know what prayers are enchanted, spoken aloud, spoken to yourself, written or expressed without the consent of the NFL or the Roman Catholic Church. I’d love to sit quietly and hear the truth to God, the universe, and the restaurant at the end of infinite space and time (a conundrum as rich as a prayer itself.)

But I don’t hear anyone praying. There’s no cancer Mecca where everyone faces east at a specific time of day to pray. If your words are true, come sit with me and share your prayers. Else, please don’t say you pray as a good way to design an end to a conversation in which you’d rather not participate. If I can handle nearly every night in the hospital since thanksgiving up until nearly mid December, it’s perfectly okay not to pray for me or say you even think about it, but maybe you do. So, my heart says, “leave it alone and don’t look a gift rabbi in the mouth.” But I can’t let this one go.

How’s oncologist’s prognosis?
My oncologist looks wistfully at me as if he’s in awe of my state of being alive. I imagine the adjective “whistful” hasn’t been applied to him since a love letter from his now wife of over 25 years sent back in medical school in as many years ago. I love my oncologist for knowing he doesn’t know what to say. For knowing he really wants me alive. For knowing in my heart the hope in my eyes reveals itself to him. He dares not crash it like the crystal palace so burned to the ground almost symbolically before the beginning of Hitler bombing Britain, before Chamberlain said I quit, and before the Lion, Churchill came to pray, too.

Such as upon The Duke of Windsor’s abjuration of the throne for a twice divorced American social climber extraordinary. Yet she remained until his death some 30 years later as his wife, and certainly more interesting than a sniveling ex prince. My doctor would no more give up on the throne of my health than I would. So I know when he prays for me, and he does, I needn’t listen in because he brings them to me like letters tied in bows and looks at me with a sidelong smile saying bless you and keep you and let’s get this thing, huh? I’m his miracle kid.

My palliative doctor: She’s gone from the Stanford practice and my new palliative oncologist basically types, nods, and hands me prescriptions for medication. That’s why I thought I’d ask someone I trust. My old palliative had recommended CBD to THC 3:1 but that was before taxol. Now I’m on my online groups and everyone has a different opinion but no one lives here in northern California. It’s kind of a strange hypocrisy that everybody does it but they don’t say they do. At times my stomach is in so much pain even compazine doesn’t help but smoking marijuana does. It’s a crap shoot and my friends generally help but this is beyond what they know or want to understand.

So I tend to reach out when necessary to people closer in situation and like I said, who I trust. Marijuana’s legal, but not regulated for promised content of purity so there’s no standardization. I’m essentially on my own doing what I think I need.

The good news: I’m incrementally the very slightest bit better each day. However the chemo is very very hard on me – I cannot say less good about this radical pathway to getting better than that. I’m driven to believe there’s a better way. If the patient is gone, what’s the point of treatment. Mind you if it’s saving my life I’m not complaining.

How deep is your love?
Craig’s busied himself on home improvement and seems to have pretty much recovered from his depression finally, but he’s still somewhat tenuous. He’s unable to handle illness and I’m not as utilitarian as I once was – the need and the ability are both gone so we shall see what the future brings, but for now, my friend is coming the day after Christmas to help me until the 6th or so and my old housekeeper insists on coming and cleaning and helping me with my online shop stuff once a week for nothing. I insist in paying her something since she’s not responsible for the cleanliness of my home. I have angels in my architecture peering out – she’s one of them. And she had to promise me to please quit smoking. And being a good sweet person she aims to do it.

I have several good friends who check up on me too. I’ll probably go to a friends for Xmas dinner instead of being alone. I’m saddened that neither of my stepsons have asked about me and I haven’t heard one peep from my younger one, who really surprises me. I don’t even have the 19 year olds new phone number – I’m not asking either – I spent 10 years raising them. But I know it’s either not even on their frontal lobes or it’s just like with dear dad, if I don’t have anything to give why bother?

Last year I had loaned the younger kid over $500 for Xmas and for tickets to a concert he took his girlfriend, whom I’m glad to say he’s still with, and he couldn’t pay me back. I forgave the debt, but since then he seems even further away. Like everything and everyone seem a little more distant and like a good diaspora shouldn’t come return again. But it was never this way until this year and now zero words at all get exchanged. I know nothing changed as far as how I feel but granted a year and a lot of water has traversed the spaces in between and I’m simply the undeniably dying evil stepmom now.

Always something there to remind me.
People cannot just pop over anymore, although company keeps my mind off my cancer. I was supposed to go to LA next weekend for a Byron Katie New Years cleanse to which she gave me a personal scholarship to go but I clearly cannot. I wish that I could and was in better condition to steep myself in healing practices and guilt releases of the most obstinate kind. The kind that wrestle your soul until the bitter orange end gets bitten off at the navel and just as you’re ready to say, “I get it now!” You’re gone.

There’s a certain audible cruelty with this tumor in my peritoneal cavity. At least we know once you’ve got metastatic it’s no lie – you can be fine today and dead in a month. I believe this pain is a universal nudge for unclasping my hands, untying my blindfolds, seeing what’s realistic, and slowing the hell down a bit. And I bit off way more than I could chew. So I’m sorry the cat really had my tongue.

Each morning I wake up…
If you say prayers what are they? Are the words biblical, just a short thought of something bright and healthy, or vibes of happiness in general? What, if you don’t mind sharing those less personal in nature, do you pray for when you think of a sick friend or relative? I would appreciate if you’d please leave a comment. I’d really love to hear from you, and as cheeky as I may sound, I know it’s serious business. That’s why I’m slightly veering off the ramp towards Offended and off the road when I’m blown off of a text or phone or in person conversation with the words “I’ll pray for you.”

Will you?