Frangible Murk

In this realm within which I currently reside, this frangible murk, there are no maps.  I can’t tell if I’m trudging towards an early death, as predicted by my Western docs, or clambering along a trail to a new found life as a wise old woman. Or both? It’s murky and I can’t see ahead, and at times can’t even tell up from down.  It’s dark in here.  At times the darkness prevails all the way into my soul and I long for death to end it: the abyss, the uncertainty, the effort of it all.

Light is there, too.  The light.  O the light.  Flashes from moments of kindness, my own and others.  A raindrop on a dogwood bud in the Fall, a globe of red and orange and green, trembling.  My dog Tara’s ear, like satin under my fingers.  The wind making our open windows rattle their storm dance late in the night.  The sound of the rain.  A burst of frail energy that shows me my next step.

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I’m reading voraciously: What Really Matter, by James Hollis, a Jungian, written in his own waning years.  He uses words I’ve never seen before, like “frangible” (that means fragile, or breakable).  Desuetude: I haven’t even looked that one up yet.  Many more. Hollis says feed your soul first.  If not, it will rebel and cause symptoms.  Do not comply with the shoulds of others.   He also writes that when we are dying, we are losing our “management systems” that have carried us through life for so long, and that makes us cranky.  Yup.  I am incredibly cranky lately.  If I’m cranky with you, don’t take it personally.

Just finished reading Mary Oliver’s Upstream, a collection of essays .  If I were rich, I’d send a copy to everyone I know.  Here’s a quote near the end.  “In the winter I am writing about, there was much darkness.  Darkness of nature, darkness of event, darkness of the spirit.  The sprawling darkness of not knowing.” She wonders if the light might be hope or faith; hope “far messier than faith must be.”

Then, last night, late, awakened by the storm, I heard the words as clearly as if someone had whispered them in my ear, “Be here now!”  Ah, Ram Dass.  Bless him.  But it wasn’t he who whispered.  I don’t know who it was.

But what I saw, or felt, in that moment, a moment of light, was a way out of the murk, a flashlight to illuminate my way.  The present moment opens to eternity – the only door, the portal.  I got a glimpse last night, and because it is a frangible murk, it’s already gone.  But the gift remains.

A messy hope, some wordless faith, a dropping away of the darkness that seems to result from a long illness.  As an idea, a platitude to offer someone who is suffering, well, it’s iffy.  “Be in the present moment, my dear.”  Meant well, surely.  But if the present moment, and all the zillions of moments before then, really suck, then it’s not so helpful. If you know me, please don’t give me this advice.  It doesn’t help.  I get cranky.

As a felt experience, elusive and grace driven, sensing the presence of eternal Love, well, that’s another story altogether.

Maybe what we can tell people who are suffering, you and me and all our loved ones, is to seek the portal to timeless joy, and let that joy carry us for a little while.  And that portal can only be found in the present moment.  Hiding in plain sight.

A wise young woman just told me tonight: “Don’t effort now.  Rest. You will recognize your next steps when you see them emerge into your life.  Trust yourself”.

Perhaps that is the map itself.  A frangible map, but a map.

 

 

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In the Realm of Hope

Hope tends to play a role for most of us who live with a terminal diagnosis, whether it is acknowledged or not.  It’s there, either looming large and constant, or laying in pieces on the floor, fragmented and fragile.  Or somewhere in between.  Upfront or out of sight, out of mind, lurking.  Or leading us on into what’s next.  I think of myself as being essentially hopeful.

It wasn’t until I got into the book Die Wise, by Stephen Jenkinson (from the video Griefwalker) that I began to ponder how hope lives in me these days.  His third chapter is titled The Tyrant Hope.  My very first thought was “What the fuck?”

My second thought was “Fuck you!”

After that, I settled down to read what he has to say.  As a worker in what he calls the death industry (hospice and palliative care), he writes “Sometimes you have to wonder aloud whether hope is all it’s cracked up to be, and then wait for the pieces to fall.”  And so, they are.  Falling, that is.

In his world, people with a terminal diagnosis generally hope for more time.  Hope is the “conjuring chant taken up in the name of compassion.” However, “More Life is mostly More Death.”  Hope is “an anesthetic of the spirit.  It ensures that it will be too late to learn how to die, in a death-phobic culture.  Dying in a death phobic culture is traumatic.”  Hence, “Cope, Hope, and Dope” is what the allopathic, Western world has to offer the dying.   In his world, Hope is a vote for a future, a mortgaging of the present.  As long as you are hopeful, you are never in the land you actually hope for.  By that, he means that you are always living down the road, not where you are.

Hope is not life, and hopeless is not death and depression.  It’s a false choice.

“The alternative is to live your life and your dying hope-free: a subversive move towards lucidity.  A revolution.”

Well, okay then.  As a practicing Buddhist, I can practice letting go of hope and moving more strongly into the present, through meditation and yoga and so on.  Got it.

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Then along came the next book, Mystical Hope, by Cynthia Bourgeault, an Episcopal priest who is lucidity personified.  And her book is an entirely different take on the concept of Hope.  The subtitle is Trusting in the Mercy of God.  If I hadn’t already read one of her very fine books, I would have passed this one by.  However, the thing shimmered at me on Powell’s website, so I ordered it, a small gem.

Her whole book leads to this paragraph:  “Hope is not imaginary or illusory.  It is that sonar by which the body of Christ holds together and finds its way.  It takes enormous courage to live the Christian gospel..to move forward in hope. ” But it takes her whole book to get you there.  If you are willing.

Hope, most people feel, can help them live, providing a surge of energy that would make life feel possible again.  Going from a Stage IV to a Stage III cancer has certainly opened up my heart again to hope. Here she agrees with Jenkinson: ordinary hope lives in the future, seeking some kind of good outcome.   However, what Cynthia is addressing is about finding a deep and steady current of life that is the source of hope itself, a theological journey instead.

Mystical Hope has nothing to do with a good outcome, with the future.  It has something to do with presence, the experience of being met, held in communion, by something intimately at hand: a direct encounter with Being itself. It brings strength, joy and satisfaction, producing them from within.  If we rush into the future or stay rigidly focused there, we miss the hand of God who can only touch us in the now.

And that is, I think, what Jenkinson is also teaching, only with vastly different language and context.

Cynthia goes on to make a distinction between Grace and Mystical Hope.  For her, mystical hope is not an extraordinary infusion, (such as we tend to think of with Grace) but an abiding state of being, developing a permanent connection to this inner wellspring, becoming a body of hope itself.  It’s connected deeply to Mercy , “God’s innermost being turned outward to sustain the visible and created world in unbreakable love”.

Mystical Hope is for her an electromagnetic field of love.  “It warms, it fills, it connects, it directs.  It is the heart of our own life and the heart of all that lives.  Hope’s home is at the innermost point in us, and in all things.  It’s not a feeling that results from a happy ending, but lies at the very beginning, a  pulse of truth that sends us forth.  When we are attuned to this, hope fills us with the strength to stay present.”

I tend to think of this as radar, my own radar.  Once, having taken too much cannabis oil, I found myself flying through time and space, no up and no down, no right or left, no way to navigate, no vistas, just space.  It seemed that I needed to make micro decisions every few seconds, and had no way to know how to do that.  It was infinitely scary.  My notion at present is that death somehow holds moments like this, and we need to have a way to safely find our way.

If I consider Mystical Hope as the Source of Love itself, then simply attuning myself to this deep place would be enough.

Simply.  Well, maybe not simply.  So glad I have more time to do this necessary attuning.  My pieces are falling, but into place.

 

 

 

 

 

The Medicine Buddha shows up

Well, I memorized the Medicine Buddha mantra, after a long effort.  I looked it up online, and figured out what I was actually saying, and then how to say it in Tibetan, using Dr. Tenzin’s song on my cell phone.  Thank God for my voice recording ap.

Even after all that, I’ve only been around my mala once with this mantra.  But here’s the thing: it works.  It really works.  By that I mean that at some point, about half way around the 108 beads of my mala, slogging through the memorization trip, all of a sudden I felt the mantra take on a life of its own.  It began to vibrate throughout my system, kind of like a plane about to take off, but of course very subtle, faint, just discernible to me.

The main word, Bekandze, means essentially healing energy.  It’s repeated three times, indicating the three levels of healing, from a person, to the spiritual realm, to the entire universe.  Buddhists tend to think big.  So, here comes the mantra round again, new bead, and boom!  I could actually feel the healing energy of the Medicine Buddha, coming in to me through my heart center or chakra.  Then flowing out from me into the spiritual realm, and then I pretty much disappeared or became transparent, and the healing energy flowed out into the entire universe.

Now we are talking about me, an often lazy person, a non-striver of sorts, a broken being on many, many levels, so I understand that this was a tiny thimble full of what’s actually possible by someone like the Dalai Lama, for example.  But I felt it, my inner eye could see it, and I trust it.  My experience.  And how is that healing?  Well, my whole being felt clear, because of this mantra.  No cancer cells anywhere.  No toxicity.  No fears.  Just  clear sky like nature of my mind, clearing my body.  For a split second.

The idea is to say an entire mala’s worth of this mantra every day.  I can do about 1/3 of a mala at night, laying in bed, saying it silently so as not to wake my beloveds. (I include our dog in that category.) So I am not there yet, not by a long shot.  But it’s a start.  Thought I’d report.

Christiana came to visit me today, for an interview that she wanted to do.  We talked for over three hours!  Such a patient, kind soul.  She brought me a gift of a rose quartz, which is a healing crystal for kidney disease.  I put it near my chair, and will soak it up over time. She knows a great deal about this type of medicine, and I listen and learn.

In one of my catalogs from Wisdom Publications I discovered a book entitled How to Enjoy Death: Preparing to Meet Life’s Final Challenge without Fear, by Lama Zopa Rinpoche.  What a concept, huh?  Christiana knew of the author, so I will order it at some point.  Curious, frankly, about how anyone could hold such a thought, never mind write an entire book on this subject!  Reminds me of how women in the early 70s were talking about birth as an orgasmic experience.  It seems counter intuitive, but we live in a death phobic culture.

Meanwhile, I am pondering hope.  In one book I’m reading, Die Wise, the author has an entire chapter called something like “The Tyranny of Hope”, and another book that shimmered into my awareness is “Mystical Hope” by an Episcopal priest Cynthia Bourgeauldt.  An amazing little gem.  So what is the role of hope while living with a terminal diagnosis?  An obstacle to dying wise, or a mystical dimension of Life itself?  Or both?

Stay tuned.

Tayata Om Bekandze Bekandze Maha Bekandze Radza Samudgate Soha.

 

 

The end of Murk, for now anyway.

On a wet and breezy afternoon, leap year day, Eric and I sat down to talk with a new urologist/surgeon who affirmed, confirmed, announced that I am, in fact, no murk, a Stage III kidney cancer patient.  Not Stage IV. We peered at the CT scan, 6 eyes peeled, and could see what appeared to be lymph nodes between the aorta and the vena cava, but they appear to be normal lymph nodes that could be a little iffy, but yeah, mostly normal.  There is no indication anywhere that there is cancer in the right kidney, except that the first surgeon told us he had seen it there when he went up with a camera to try to zap the kidney stone, which, it is true, no longer exists.  That one is a mystery.

After talking it all through, we’ve decided to simply wait another 6 months for the next CT scan.  The first urologist/surgeon said a year ago that I had a 4% chance of living through surgery to remove my primary cancer of the left kidney.  He also said it appeared that the cancer had spread to my lungs, and to my other kidney, and was in the lymph nodes, so I would probably die in 2 months to 2 years.  This new doc said I had a 99% chance of living through the surgery, if I decide to go that route, and that it was “highly unusual for such a large kidney cancer to stay stable for one whole year”.  He agreed with the idea of waiting for another 6 months, with some trepidation because kidney cancer can “bloom” without any warning, and become life threatening quickly.  I understand that and live with that.

He refused to update the prognosis, or even comment on it, because “we never really know how long anyone will live or can live, and it’s better to leave it open ended.”  Yes!

It doesn’t hurt, ladies, that this doc reminds me of the new PM of Canada.  I’m old, but I’m not blind, as the saying goes.

So, Eric drove me to A Piece of Cake to celebrate with a vegan Irish Oatmeal vegan cake!

Instead of becoming complacent, my intention is to increase our efforts to remove this cancer from my body, to become a Stage II in 6 months.  We’ll see if it’s possible to do that, or at the very least stay stable.  If, and it’s a HUGE if, I decide to have this surgery, I want to be much stronger before I go in for that.  Chemo might follow that, which is daunting.  I’d prefer to kill this shit with joy!

Meanwhile, I stumbled upon a marvelous little jewell of a book called Mystical Hope by Cynthia Bourgeauldt, an Episcopalian priest.  I highly recommend it to those of you who are not allergic to Christianity at its finest.  Cynthia knows about the shimmer, she does.

Stay strong in your heart, and keep that channel open if you can.  I’ll meet you there.

 

 

 

The Land of Murk

Things are getting murkier and murkier.

Murk one: a year ago, my oncologist urged me to have surgery to remove my left kidney as the “primary” source of Stage IV kidney cancer.  The surgeon, a week later, said “forget it, no point in doing the surgery, you’re fucked, and your oncologist will throw the book at you because all she knows is surgery, radiation and chemo and you can’t do any of that.”  Not exactly a quote, but close enough.

Murk two: Six months later, second CT scan, more murk: no change in any of the tumors in my kidneys, lymph glands, and lungs.  However, the actual detailed report says something like, “Hey guys, maybe the primary isn’t really cancer, maybe it’s a oncocytoma, (just a dense something, not cancerous) but maybe not. Maybe she has endobronchial pneumonia.”  Oh, and one kidney stone in the right kidney.

Murk three: six months still later, a few weeks ago, third CT scan, and now it’s total murk. All of a sudden the radiologist says I have Stage III left renal carcinoma. (No longer Stage IV?!  For real! Joy dance!)  Lungs are stable, still wondering about bronchopneumonia.  No kidney stone, right kidney.  (Where the hell did it go?  I didn’t pass it, I would remember something like that, believe me!) No change in kidney cancers, right or left.  No sign of malignant cancer in abdomen, which means the cancer in my lymph nodes disappeared.  Gone.  (Where the hell did they go?) More dancing and cheering and celebration in my world.

Murk four: My oncologist never told me I was now a Stage III, but did contact another radiologist who said, “Well, I see the malignant lymph nodes.  Yup.”  I have not seen a record of this opinion yet, in writing.  However, in my oncologist’s eyes,  I am back to, or am still at, Stage IV.

So I have no confirmation in writing of what Stage I am in, or on, except the Stage of Life.  There is a difference of opinion between radiologists as to whether or not there is lymph node involvement.  The surgeon we spoke to a year ago, who said I was doomed, said that there was cancer in the right kidney, for sure, “I saw it there when we tried to zap the kidney stone.”  However, he didn’t write that into a report of any kind, so we don’t really know for sure that there is cancer in the right kidney. It’s probably there, but…  On Monday I go see a new surgeon/urologist and will ask to see the CT with my own eyes, and Eric’s.  I want to see those lymph nodes myself.

If the lymph nodes are truly gone, that means that the left kidney, the primary, is not metastasizing.  I think.  All I really know is that there is a formula somewhere in the Western medical canon that says that if the lymph nodes are involved, and there is renal cancer, or cancer in the kidney, then the patient (that’s me) is Stage IV.  It’s an automatic thing, a protocol.  And they believe that the nodules in my lungs are cancer, from the kidney.  I personally think the nodules in my lungs are basalt dust, but what do I know.

A song of Clarity in all of this: I will not have the operation now.  Maybe later on, down the road.  I am looking for a new oncologist who will help me hold open the possibility that I will live through this disease, a tiny door at the end of the bell curve, who will work with my entire integrative medical team including my Tibetan doctor.

My oncologist sees me dying from this, I can see it in her eyes.  Maybe I will, maybe I won’t, I’m actually okay which ever way this goes.  But I want that door open a crack until we can all see that it has closed on its own.  Don’t shut it before we get there!

Meanwhile, I am practicing joy.  Sun, daffodils, daphne, bees, walking.  Life is good, even when it’s murky.  Joy to you all.  May the shimmer be with you.

 

 

 

Tibetan Medicine update

Dr. Tenzin is back in Portland, and I got to see her today.  She encourages me to eat better, especially broccoli, cauliflower, and cabbage.  And soursop, a strange fruit I’ve never seen.  My husband Eric looked up on his laptop where to find it in Portland.  I’ll let you know.  Dr. Tenzin says that some folks are finding soursop to be 90 times more effective than chemo!  Worth a try, part of the adventure of this process.

And says “Joy.  Focus on joy.”  In her own very respectful way she indicates that I am worrying too much, thinking too much, and need to relax.  Yup, got that right. Easier said than done, that.

Dr. Tenzin did her Tibetan bowl magic on my body again, this time focusing on clearing my lungs.  When the last vibration had sung itself out, I felt my whole chest cavity open and clear, and my breath deepened. Christiana, who lives in Portland, is learning and I bet she will be extremely good at this, too.  I plan to provide this to myself as often as we can afford it; it’s delicious and effective.  I wish everyone in the world could have this experience at least once!

Dr. Tenzin taught me a Medicine Buddha Healing chant, and even suggested that I record her singing it in Tibetan on my phone.  The idea is to sing it for every bead on my new sunstone mala, 108 times a day.  Memorizing just about anything is hard for me, but I look forward to this practice, and hearing her voice every night, with her profound encouragement: Trust yourself.  Live your life fully every day, find joy.

And I will be sending out the energy of the Medicine Buddha to everyone I know and to all sentient beings, as well.

Because, hey, I am stronger now!

PS on Food as Medicine

For those of you who might have read this last post on food as medicine,  I have some other recipe books to recommend that help a great deal with cancer and really any other illness or disease that you might live with.

Eating Your Way Back to Health: A Guide to Anti-Inflammatory Cooking, by Jessica K. Black, ND, and her second book, More Anti-Inflammation Diet Tips and Recipes: Protect Yourself from Heart Disease, Arthritis, Diabetes, Allergies, Fatigue and Pain.  Both of these books, written by a Portland local Naturopathic doctor, offer some really excellent recipes and information about foods we might be choosing.  She has a foolproof banana bread recipe, for example, that is gluten free and sugar free and tastes great, easy to make.

When I was much younger and lived in NYC in the late 60s, there was a restaurant not too far from me in what became the East Village that served only macrobiotic food.  I loved that food, and used to think that if I ever got really ill I would revert to a completely macrobiotic diet.  Well, now I am really ill, and am turning naturally to this diet.  It’s similar to all of these I’m recommending now, but based more on a Japanese style of eating, with seaweeds, rice, and no sugar except fruit.  I find that I am now craving this food.  My old copy of Zen Cooking is probably out of date, but I assume there are newer books out with an updated macrobiotic menu.

Kidney cancer is a strange disease, in that all the doctors of Chinese medicine and Tibetan medicine that I’ve consulted have urged me to eat meat and eggs.  What I find is that I feel stronger and healthier when I eat meat about 3 times a week.  Most cancer fighting menus urge patients not to eat meat at all, but I get a pass on that one.  I give thanks to every animal who has sacrificed.  That part is hard for me.  We buy only locally grown beef that is humanely treated, feed no antibiotics, and is free range.

I think we’re back to trusting our own bodies, and listening deeply to how they respond to just about everything we try on this healing journey.  Bodies don’t lie, they are trustworthy, so I hope that you listen carefully to yours.

And do feel free to share here what you might have learned about this topic.  Comments are most welcome.  I want to learn more.

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