Thursday, December 30, 2010

"Everything is Connected; Nothing Lasts; You Are Not Alone."

"Sometimes when I’m asked to describe the Buddhist teachings, I say this: Everything is connected; nothing lasts; you are not alone. This is really just a restatement of the traditional Three Marks of Existence: non-self, impermanence, and suffering. I don’t think I would have expressed the truth of suffering as “you are not alone” before my illnesses, but now I find that talking about it that way gets at something important. The fact that we all suffer means we are all in the same boat, and that’s what allows us to feel compassion." 
This quote is from  "The Authentic Life", Lewis Richmond interviewed by Andrew Cooper, in Tricycle Magazine, Summer 2010.  Brilliant, I think, and brand new to me.  Want more?  Click on the link above for the whole interview.  Here's another tidbit:

"Without the misfortune of my illnesses I would not be able to teach in the way I do today, which includes advising and counseling people about illness and loss. So in a dharmic sense, my illnesses were also gifts. The encephalitis brought me to my knees; but in Buddhist practice, that’s not necessarily a bad thing. I got to find out what is really important, whether we’re talking about Buddhist practice or life in general.
When you take everything away, what have you got? That was the situation I had to work with. Having had everything stripped away, I understand that Buddha-mind does not depend on our capacities. The engine of practice is always there going. I unlearned a lot."

Lewis Richmond has written two books, Work as Spiritual Practice, and Healing Lazuarus.  His third, Aging as a Spiritual Practice, is due out in 2012.

Tuesday, December 28, 2010

A Little Background...

I want to back up a bit and give you some relevant details about my earliest encounter with cancer, and through cancer with our medical and para-medical establishments.

Over 15 years ago now, I discovered a small pea-like lump directly under the nipple of my right breast. I was maybe 35 years old.  My mother and maternal aunt had both had bouts of post-menopausal breast cancer-- as had an unusually high number of women of their generation living in our commercial farming community located downwind and downriver from the Hanford Nuclear Reservation.

I went to the only doctor I had in Seattle at that time-- she was a naturopath.  She concurred that this lump was worthy of suspicion, and suggested I go for a mammogram. But where should I go?  I had no health insurance.  I called the various "Women's Clinics" abundant in Seattle to find out how much this procedure would cost.  No one from any doctor's office could give me that information.  NO ONE KNEW.   They knew the insurance code, but clearly most people did not pay for this out of pocket, and getting anyone to give me a price-- much less enough information to compare prices-- well, I am pretty sure that never happened.  I think I just picked a clinic near me and hoped for the best.

It was in a tall office building on what is called Pill Hill in Seattle.  I rode up in a cushy elevator.  I entered an office clogged with ferns and shades of pink and mauve. Fancy!  Pink coffee cups.   Mauve curtained dressing rooms.  Attendants in rose-colored scrubs.  A wrap-around gown in-- you guessed it--mauve.  I was shocked out of this plummy dream by my first ever mammogram.  (Jesuz-ouch!  That old adage about having one's tit in a vice is no joke...)  I was told not to get dressed yet.  The Dr wanted an ultra-sound.  Uh, and how much would that cost?   They didn't know.  Was it necessary?  The Dr. thought so, and, after all, he's the Dr!

I lay down in another room next to what looked like a large TV monitor.  The Dr, a large white-haired man in a large white coat, swept into the room.  He was clearly in a hurry. ( Imagine the long line of women in mauve gowns awaiting his attention.)  Maybe he introduced himself to me -- I was in such foreign territory, I might have missed it.  He squirted this nasty cold gel on my bare breast and squished something hard into and all around the nipple.  He said,  Just as I thought.  This is nothing.  A clogged milk duct.   

And with that I was dismissed.  There was no further discussion.  I got a bill for several hundred dollars in the mail.  Oh, and they encouraged me to return next year to do the whole thing all over again.  Ah, no, thanks.

There was NOTHING about the experience that I felt good about.  I did not trust him.  I did not like the place.  But here was a Dr, a specialist, with all this special equipment, and he said it was nothing, so it must be nothing, right?  After all, just because I didn't like it, doesn't mean they don't know what they're doing.  And, besides, it cost a lot of money.  Especially to find out it was nothing.

So, for at least a year or two after that, when I got a breast exam as part of my annual check-up at the free clinic, I told the doctors that I had a clogged milk duct in my right breast, that I had been to a specialist, and had been told it was nothing to worry about.

Then one year, the doctor who had done my previous year's exam said,  Hmmm, this feels different to me.  I think you should get another mammogram.

I am eternally grateful for her vigilance. And I am grateful to my friend Kim for forcefully encouraging me try yet another therapist, and I am grateful to that therapist for persistently encouraging me to try an anti-depressant, and I am grateful to Zoloft for getting me to a place where I could even consider getting annual exams...  As I used to say, Thank God I was not depressed when I discovered I had breast cancer.  I might not have lived to tell this tale.

When I told my free clinic doctor, with some perturbation, that this was the exact same lump that the special breast Dr had told me was nothing, she said, Well, we can't be sure it is the same lump.

But I can be sure.  It is my breast.  I have felt this lump at least once a month for at least two years now.  I am familiar with it-- so familiar that I did not notice its subtle changes like you did having examined it only once a year.  This guy got it wrong.  Really, really wrong.  Shouldn't he at least be told?  Doesn't he have any responsibility?

The short answer is no.  He does not.

The unspoken answer is that doctors do not tell tales on other doctors.

And the final answer is that one must trust one's instinct, and do one's best not to be persuaded by fear or by desire.  I wanted to believe this guy-- even though everything, every single thing about him, the place, the procedure, the event felt wrong wrong wrong to me.  I wanted to believe in his big white coat, in his authority, in the idea that he knew something I did not know about my body even though he hardly bothered to take either me or my body into his busy circle of attention.

This lesson has not been lost on me.  I am willing to partner with all kinds of medical/health practitioners, but I have never again abdicated my responsibility for the decisions I make about the care of my body.  I am glad for the expertise each brings-- grateful that they know more than I do-- but I no longer seek comfort in trusting their authority.  I ask a lot of questions.  Some practitioners can work with that, some can not.  I find the ones who are willing to partner with me.  I try to keep my mind and my eyes open.

I am no longer impressed by anyone's big white coat.

Saturday, December 18, 2010

Tumor Markers Shrink By Over 50%!

Doc Sez: Blood Work Good, Tumor Markers Down From 1200 to 400!

Now, just exactly what is being measured here is not entirely clear to me, but the layman's take-away appears to be that this is hard, scientific evidence that cancer is is less present in my system than heretofore.  So-- Frabjous Day!  Callooh!  Callay!  Let's chortle in our joy!

Good News, no doubt about it...

But...  I don't know.

Things are going my way and I should maybe just shut up and be grateful.



(I must be feeling better, here comes the piss and vinegar.)

Okay...  I just find it interesting that these blood tumor markers --  about whose dependability allopathic medicine was highly suspicious when my naturopath wanted to follow them thirteen years ago--  you know, during my very first brush with cancer, when I was looking for alternatives to the brutal cell-warfare that is chemo and radiation, aka "the standard practice"-- are NOW, at this stage of the game, treated like the very gospel.

Of course, I'm in the middle of Round Three, here.  This is Stage 4 Breast Cancer.  There is no Stage 5.   The standard, proven, go-to treatments of chemo and radiation were 'gone-to' during Round Two and were found, in my particular case-- uh, what shall we say?--  Of Limited Effectiveness?  So now maybe allopathic medicine is willing to reach a little further off the map, where before I was told, Beyond Here There Be Dragons.

It's just...  interesting...  I know that so much of this is educated guess work.  Science is as much a narrative, an explanation, a story we tell ourselves to explain the world, as anything else.  But the guesses, the stories that get the most study and hence might render the hard evidence that the AMA likes to see (and, not incidentally, the insurance companies-- don't get me started...) those are the stories, the guesses that someone can patent and sell. This cannot be surprising, can it?

And whatever those newest stories or guesses are, they have to be rigorously tested before they become standard practice.  This only makes sense, right?  We want our medicine to be safe.  I get that.  But.

I guess my question remains:  How does this benefit those who are suffering here and now? And maybe more importantly:  How does binding our model of healthcare to the profit motive benefit anyone?

Well, this is a long, long story, friends.  The story of my own bewildering journey through the labyrinth of current medical practices, systems and institutions, the role of pharmaceutical companies, the effects of the air we breath, food we eat, water we drink, and the stress of modern life, the efficacy of pink ribbons and the mind-set they arise from and in turn support, the alternative world of alternative care,  the wide range of doctor-patient relationships and of relationships between mind, body and spirit.  It can't all get told here and now.  But I look forward to trying to lay the pieces out for you bit by bit.  Then maybe you can help me put the pieces together and make sense of the puzzle.

Here's what I discovered on my first pass through the medical maze:  When it comes right down to it, it is shocking how little we know.  (And we as a culture so value knowing.)  Information is not wisdom.   We all have to make the choices we believe are best-- and often it is in making those choices that we uncover what it is we believe.  Our choices are a testament about how we think the universe works.

As for me, I am open to further research, further searching, further information, further not-knowing, further surprises and further discoveries.  I respect intuition as well as proof.  I have this strong hunch that in the end science and poetry are somehow made one.  I guess that's how I think the universe works.

Sunday, December 12, 2010

Things to be Grateful for:

Recently I have been grateful for the oddest things:
Slogging my own Christmas tree across a field of calf-deep, crusty, wet snow.
Making 11 trips up and down the stairs of the local food bank with boxes of canned goods.
Doing my own vacuuming.  Yes, it took over a week of procrastination (some things never change), but I did it myself!
I cannot tell you how grateful I am to be grateful for these ordinary gifts of a life without debilitating symptoms.  I feel afresh for all those who are not free of such suffering.

We are such delicate creatures, really.  Our health and well-being depend on so many, many elements being in balance-- both within our own bodies, minds and spirits, and beyond that in the wide world of chance, or luck, or fate, or karma, as you will--  and we humans wildly over estimate our control over most of these things.

Here's my discovery about that:  When I relinquish control over those things over which I never had any control in the first place, I feel a rush of liberation, and immediately on its heels, a flood of gratitude.

To be able to do one's own vacuuming-- what a gift!

In the spirit of the season, I wish for you, my friends, all the gifts of health.  Even more precious,  I wish you the gift of appreciating everything you have.

Saturday, December 11, 2010

If It Be Your Will

“... songs are just the response to what struck me as beauty, whether they were a curious emanation from a being or an object or a situation or a landscape. That had a very powerful effect on me, as it does on everyone and I prayed to have some response to the things that were so clearly beautiful to me. And there were a lot.”   
 Leonard Cohen 
I got to spend An Evening with Leonard Cohen when he came to Portland this week.  I was SO GLAD to be there.  It was performance as prayer, as poetry.  It was a gift, and the giver had such humility and gratitude, such a remarkable sense of presence.  I would like to thank the universe for giving us Leonard Cohen, and thank Leonard Cohen for having the strength and grace to pass his gifts on to us.

76 years old, and still giving it all away on stage.  What an inspiration. "Ring the bells that still can ring."

Friday, December 3, 2010

The Parable of the Dead Mouse

Before Thanksgiving, I was tootling around the house one morning, getting ready to head out the door when I spied-- and nearly stepped on -- a mouse in the TV/fireplace room.  ( I actually said, Eeek!-- just like in the cartoons.)

I went into the kitchen thinking to find something to scoop him up with-- But what?  And then what?  Put him outside with a stern talking-to?  I didn't know.  I grabbed an old yogurt container from an  overflowing shelf of same. (Yup, time for my friend Janet to visit and inquire oh-so-gently, Do you really want to keep all of these?  But I digress...)

Armed with container, I march back to the TV room where I see the mouse in question.  He is moving now, but certainly not scurrying.  Can a mouse lumber?  Perhaps my dog had been "playing" with the poor thing before I found him?  Or-- gulp -- perhaps it is hugely pregnant?  Because there is definitely something not right about this mouse.  Lumber, pause.   Lumber, pause.  I watch, hesitant to scoop.  Truthfully, I am scared of this little creature and of whatever will happen between us post-scooping.

Now he is under the coffee table, then, in a relative burst of near-scurrying, I see his tail disappear under the couch.  Great. Now what?  Well, I don't have time to chase this mouse, I gotta go.  Later, I think, I'll finish this Later.  I shut the door.

Guests arrive, the holiday ensues, the door to the room is opened, the mouse forgotten or perhaps reduced to the littlest niggley nub in the back of my mind.  Then one night after watching a movie together, my friend Ladan says, Honey, something does not smell right in this room.

Oh shit.  I bet I know what that is...  I tell her the story.  It is late, we've had a long day, we agree to face the dead mouse in the morning.  The morning flies by with preparations to get Ladan to the train station in Portland.  I take my sister out for an Indian food birthday-lunch, do some shopping, run some errands, and it is dark by the time I get home.  I can definitely smell something "not right" in that room.  I close the door.

The next morning, there is 6 inches of new snow.  My friend, Gin, who I'd talked into coming over to hold my hand while I deal with the dead mouse, is snowed in.  Aren't you a supposed to be a farm-girl?  she laughs.  Okay.  I pull up my big girl panties, slip a plastic bag over my hand and a kerchief over my nose.  I'm going in.

This is when it hits me:  How I've avoided this encounter with death, how I put it off, how armed-to-the-teeth I am now with protection against it.  I nearly laugh out loud:  Here I am, I think, Ms. Non-Aversion-to Death.  

But I would still rather not move that couch--- what do I fear?  Do I imagine something from a horror film, something gruesome, imploded flesh writhing with maggots?  I don't know.  I do know I must act now or I will lose momentum.  I move the table, the throw pillows, finally the couch itself.  There on the carpet is the tiniest, sweetest, most harmless little dead mouse in the world.

Here he is, just a little creature who's time has come and gone, just a helpless little dead body.  My heart breaks open for him.  We are the same.   He is just a living thing that is now dead, as we all will be someday.  There is nothing wrong here, nothing foreign, nothing bad.  I hesitate, then scoop up his tiny body in my plastic-gloved hand.  It gives me pause-- it is still soft, not warm, but not stiff.

I ponder the wall I erected -- totally unconsciously-- to separate myself from this tiny creature's death. I know this wall, this line we draw between ourselves and others.   I know it because I have frequently been on the other side of that line in recent months.  I call it The Hedge.

It's the tiny little line that gets drawn because I am the one with cancer.  The tiny, unconscious separation:  You are the patient, the sick one, the one needing care.  On the other side of the line, life goes on somewhat as usual.  In its most virulent form this is what allows people to respond to someone diagnosed with lung cancer with, Well, he smoked you know.

Meaning what, exactly?  Not all smokers get cancer and certainly not all those who have lung cancer smoked.  It's The Hedge, the way we tell ourselves that our lives are under our control, that we won't get cancer because we don't smoke, or we don't eat junk, or we exercise, we"take care of ourselves," etc, etc, etc.  This illusion that we will not have to face death because we are alive and well and death and  illness-- well, they are on the other side of this line.

I think this is what Ram Dass (and maybe others) refer to as the I and Thou problem:  Our propensity to separate ourselves,  to believe in our separation, to ignore all evidence to the contrary.  We are all in this together.  We share the same fate.  Each of us will die, just like this mouse did.  In this, he is our brother.

Seeing my own Hedge gave me instant insight.  I try to not take other people's Hedges personally.  I do know it is about their own fear of illness and death. It's not about me, it's about what gets triggered in them.   But I think I held some notion that my proximity to death, my willingness to look at it, my desire to not deny it, made me somehow special.

One tiny little dead mouse shot my specialness all to hell.  I saw that aversion to death, the drawing of the line,  the desire to separate from it is instinctual.  Maybe it is a knee-jerk reaction of the ego, maybe it is a line that with time and attention we can no longer need to draw.  This is why the Buddhists used to meditate in charnel yards, right?  To face death.  It is not something you do once.  It is a practice you do everyday.  Because the Buddhist teachings say that if  you can learn how to die, you will learn how to live.

So. I honor you, little dead mouse, for your teaching.  For showing me my self, for reminding me what is important.  Thank you.  Now, go be born a Buddha.

Thursday, December 2, 2010

"I Have a Disease-Threatening Life"

OMG! (Do Buddhists say that?)  I think I am in love.  I just found this quote from Rick Fields:
''I don't have a life-threatening disease.  My life is threatening my disease, in that it is keeping the disease from taking over. I have a disease-threatening life.''
From his 1997 interview with Helen Tworkov in Tricycle, the Buddhist magazine they both helped to found in 1991.  He was diagnosed with lung cancer in '94 and died in 99. 

Here is a link to his NYT obit, just in case you are as curious and as ignorant as I am.  (Oddly enough, I am familiar with two of his books, "How the Swans Came to the Lake," and "Chop Wood, Carry Water.")  Here's a link to his 1998 interview about death and dying in The Utne Reader.