"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.

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.

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.

Okay.

But.

(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.

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.

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."

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.

"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.

Got Guiltlessness?

"... even though you make a lot of mistakes and you mess up in all kinds of ways, all of that is impermanent and shifting and changing and temporary. But fundamentally, your mind and heart are not guilty. They are innocent."  

Pema Chodron did an interview with Dzigar Kongtrul Rinpoche in 2004.  She asked him as a senior Tibetan dharma teacher who has been living in the west for some time, what he thought was the most important piece of advice he could give to western dharma practitioners.   He said they need to understand guiltlessness.   


She said, "Guiltlessness?"


And you see his reply above.  Pema goes on to write: "So guiltlessness is very important in the subject of dissolving or burning up the seeds of aggression in our own hearts and our own minds.  Most of the striking out at other people, for us in this culture, comes from feeling bad about ourselves. It makes us so wretched and so uncomfortable that it sets off the chain reaction of trying to get away from that feeling." 

I found this on Pema Chodron's Facebook page, in a post from 2009 entitled Vast Blue Sky.  It is an excerpt from her dharma talk, Practicing Peace in Times of War, published by Shambhala Press.  For more of Pema's interview with Dzigar Kongtrul Rinpoche, click this link:  http://www.tricycle.com/dharma-talk/realizing-guiltlessness?page=0,0


And let me leave you with this further quote-- Pema quoting Rick Fields, a poet and buddhist teacher whom I just discovered was also a fellow traveller on this path with cancer.  (Evidently before he died in '99 he put out a limited edition called Fuck You Cancer and Other Poems, which I would love to get my hands on.)  Anyway here is the quote:


Behind the hardness there is fear
And if you touch the heart of the fear
You find sadness (it sort of gets more and more tender)
And if you touch the sadness
You find the vast blue sky

Hello, Out There

Okay, yes, it has been a while.  I have been feeling better and doing more which can lead to less contemplation and thus less writing for the likes of me.  So in that respect, no news has been good news.

I have also been in a bit of a tussle with a couple of issues vis-a-vis this whole blog thing:  First, what is appropriate to share here with you all and what I might more fruitfully or skillfully keep to myself?  As you who know and love me recognize, my instinct is to kinda lay it all out there, but if I what I really want is to be of service to both myself and others,  discretion may indeed be the better part of valor (as my both my mom and, more famously, Shakespeare said).  And discretion is, uh, not my strong suit, shall we say?  So I gotta chew on that a bit.  I don't want to blurt, I want to communicate.

There are other, more craft-related questions:  If this is a blog exploring my personal journey with cancer and  spirit, do I tell you about my family at the beach?  Do I address that only in terms related to the afore -mentioned topics?  Do you really wanna see pictures of my beloved dog?  That kind of thing...

And what about other people's privacy?  I am increasingly aware that while this can be a very lonely path, I am not alone.  My words and actions effect other people, and not always in the way I intend. 

Add to this stew the fact that my mortality, after being dangled so brazenly my face appears to be  suddenly -- woosh!-- back on the shelf of inevitable, yes, but imminent? Maybe, maybe not.

There has been no new normal for the last 5 months (or truthfully maybe year and a half?) of my life.  So when the roller coaster seems to have come to a resting point, it is understandable that I have trouble releasing my grip on the idea that my world will again fall away from underneath me any second now.  Maybe especially because that very lesson --impermanence, baby!-- has proven so precious to me.

Now it looks like I may have to deal with the fact that I might just have a new normal, at least for a while.  Maybe even for long enough to once again be in the position of contemplating how to get a paying gig...  Gosh, and I thought contemplating death was scary!

Who was it that said, "Dying is easy.  Comedy is hard"?  Being an artist in a down economy during late capitalism,  now, that's hard.  (Not to mention it being a tragedy as well as a comedy...)

So.  That's where I am.  I am thankful for all of you who care enough to check in here on me.  And wish you all the best as the snowy season descends upon us.  I'll be in touch, soon.  Promise.

Dharma

 by Billy Collins 

The way the dog trots out the front door
every morning
without a hat or an umbrella,
without any money
or the keys to her doghouse
never fails to fill the saucer of my heart
with milky admiration.

Who provides a finer example
of a life without encumbrance—
Thoreau in his curtainless hut
with a single plate, a single spoon?
Gandhi with his staff and his holy diapers?

Off she goes into the material world
with nothing but her brown coat
and her modest blue collar,
following only her wet nose,
the twin portals of her steady breathing,
followed only by the plume of her tail.

If only she did not shove the cat aside
every morning
and eat all his food
what a model of self-containment
she would be,
what a paragon of earthly detachment.
If only she were not so eager

for a rub behind the ears,
so acrobatic in her welcomes,
if only I were not her god.

 Post Script:

  

I got word yesterday that after careful consideration, Gampo Abbey decided NOT to invite me to Yarne, the 3-month winter retreat in Nova Scotia.  They are concerned both with my physical stamina (sitting for 8 hours a day is not as easy as it may sound, folks), and with my having to come and go for treatment during the time I am there (they actually prefer for participants to not have even email contact with the world beyond the Abbey for those three months).  They encouraged me to come under other, less rigorous circumstances.  I trust their desire and ability to make the best decision for all concerned, and am not as disappointed as I might have guessed.  

It does mean I get to spend the winter with my dog...

Dr's Orders, Y'all:

CELEBRATE!

Just a short note to let you all know that I talked to my oncologist this morning and the CT scan that was such a bummer last week has rendered EXCELLENT results:  It looks like the ARIMEDEX IS WORKING!  HOORAY!!  More later, I gotta go celebrate.  I humbly suggest you do the same:  Whatever you love to do, go do a bit of it today.  Dr's orders.

Patient/Impatient

Okay.  I only thought I was grumpy before...

Today I go to MCMC ( Mid-Columbia Medical Center, the hospital in The Dalles next to Celilo Cancer Center.   I can get the same procedures done at PHRMH, Providence Memorial Hospital in Hood River, but it is harder for my oncologist to read the results from the Providence system on his computer...  Are you sick of medical hokey-pokey yet?  Then sign off now and check the rest of this post later, cause we are ONLY GETTING STARTED, people).  Who was it that said, "Fasten your seat belts, we're in for a bumpy ride"?

I arrive at 9:30 am, chauffeured by indomitable Sister Lori.  I register, where they ask me my name and address, employment and next of kin, etc, as if I have not just answered those questions for them a zillion times in the past three months.  Yeah, yeah, yeah, par for the course, no problemo.

Then we go to the lab for blood work.  Yesterday when the hospital called to confirm my appointment for a CT scan, I asked about getting my labs, and was told come in 15 minutes early to get them done before I went to Diagnostic Imaging.   (And they reminded me that after my blood draw I needed to plan on an hour to swallow that godawful barrium slurry, which they have the unmitigated gall to flavor "Triple Berry" or "Banana."  I ask you, does ANYTHING banana flavored taste good?  Last time they offered to switch one of the two 12 oz shakes from hell with one flavored "Chocolate."  Is NOTHING sacred to these people?)  But I digress...

And little wonder...  it gets ugly here.  Maybe we should just fast forward to an hour and TEN POKES later, when they finally get into a vein, and skip over the part where I cry in the fuckin' lab-- not just because getting stabbed with a needle hurts (ya think?) but because sometimes my life seems to narrow down to a series of things like this that I DO NOT WANT TO DO and I have no idea when or if this little train to hell will stop.

I do not like being a patient.  And what an interesting choice of words, patient. Where and when did that start, do you suppose?

I am not the most patient patient.  But I am not the least patient I've seen, either.  Is "patient" just what they hope we will be as we scoot down the assembly line of what passes for health-care in these facilities while one service tech after another does whatever individual task is alloted to them? After all, whatever goes on in the bigger picture of my life,  any one of these people is just trying to do their job. They are not responsible for my whole experience of this health-care event.  In fact, no one is.  That is the problem.  Certainly, I am not the boss of this factory--- hell, I know less about it than anyone sporting a name tag.  I am simply the product being poked and prodded and eventually shat out the other end of this machine.  But I digress....

Okay.  I get to radiology, where the frazzled receptionist reports that I am late, which means I will be late drinking my baby shit blend (Triple Berry!) and therefore late for my turn at the CT machine.  They have a schedule, yo!  The nurse responds that I am likely to make them even further behind, since I must have been a "hard stick" and have "bad veins."

Can I say I got a little defensive on behalf of my veins? I wanted to say, yeah, well, they do everything I ask of them just fine-- maybe they were never intended to serve as frickin' faucets. (The you stupid cunt that would follow is only implied, I assure you.)

Anyway, the second time I start crying while she searches for a new vein for the IV contrast solution, my nurse is very solicitous.  She says, The next time you do a CT,  you should be sure to tell them you are a hard poke, and that they need to take you to CT and start the IV FIRST, and THEN call the lab and blah blah bla....  THAT was when really started losing it and she had to get me a box of Kleenex.

Here's the thing, I tell her, I have advanced breast cancer.  I have NO IDEA if or when there will be a next time.  I have no idea what will be required of me from to one week to the next-- what labs or scans or tests to expect.   And I do not know how hospitals operate-- I don't work here, I don't remember the protocol for any particular procedure, and THAT IS NOT MY JOB!  Isn't that someone else's job?  This is not my field of expertise.  I have to rely on others to help guide me. How come I am expected to be the one in charge?

She understands, and she is sympathetic. I mean, none of these people WANT to see me cry.  But.  She still gives me a pep talk on how I have to be  my own advocate, like it or not, and she still asks am I sure she cannot use my right (surgery-side) arm?  What exactly did they say about that SEVEN YEARS AGO when I had the surgery?  Gee, I say, why don't you call Dr T?  He's my oncologist, maybe he knows.

Once the horror show is over, my actual time in the machine is about 30 seconds.  Okay!  I can get up now, out comes the IV, and the nice nurse wants to know if she can buy me a fancy coffee drink in the lobby, since I've had such a rough day. Who am I to say no?  I know she's doing her best.  She is a kind and well-intentioned human being.  I take her  up on a double short americano.  I thank her.  I try to be gracious.

But I am drained and unhappy and angry and impatient with this whole process.  I do not want to be a patient for the rest of my life.  Or be a patient INSTEAD of having a life.  If I feel good now-- regardless of whether the treatment is "working" or "not working," -- why aren't I in Spain?  I'd hate to spend the time I don't feel sick chasing a remedy and wind up feeling shitty with only six months or a year left to spend.

I have been at this for three months now.  That is a quarter of a year.  If hormone positive breast cancer is not responsive to hormone therapy, one's predicted life span decreases from maybe ten or twenty years to something closer to two.  I know we love our "denial of death" in this country, and I don't want to spook anyone, but shit man, this is personal.  If I spend too much time chasing treatment-- and remember we ain't talking cure here, that is off the table-- I could miss my chance to live my life.  'Cause I am here to tell you, some people might be able to make a life outta being a patient, but I do not think I am one of them.  I don't want to be reckless or fool-hardy-- but I am not sure which course of action best fits that definition.

There is something banging around in my head tonight about the word and the idea of patient.   Rilke said something I've always loved, in his Letters to a Young Poet:

 Be patient toward all that is unsolved in your heart, and try to love the questions themselves.  Do not now seek the answers.  The point is to live everything.  Live the questions now.  Perhaps you will, without noticing it, live along some day into the answer.  

And lastly:  To Lori for carting me around on two of my grouchiest of days, and to Janet for holding my proverbial hand in the dark, my deepest gratitude and love.  Thank you for your tenderness and your patience with me.

Love to you all.

Mysteries

This week I discovered that a cold can make you just as miserable as cancer.  The big difference is while we still don't know how to cure the common cold, our bodies reliably cure themselves of it.  It may take a week.  Or two.  Or more-- but even so, we have faith it won't last forever, by which we mean the rest of our lives.  And that makes the misery more easily borne, I think.

But I can attest to the fact that the nasty cold what knocked me down after my trip to the coast with my sisters has been truly miserable to endure.  I feel crappy, yeah, but also bored and peeved.  Bored with how banal this crappiness is, and peeved with how it still prevents me from engaging in life.  (And- OMG!-- don't get me started on how bored and peeved I am with TV!  As a writer, actor, theatre person, and human being who appreciates good narrative like most of my species, I can only say: REALLY? This is it?  Don't get me started...)

Now the news:  Today Dr T confirmed that my most recent chest Xray does indeed confirm my feeling that the fluid build up in my lungs has improved.  YAy-uh--wait!  My blood work does not agree that this means that the Aremidex is working.  In fact the "tumor markers" in my blood work are consistently headed in the wrong direction.  This can happen at first, if the treatment is breaking up cancer cells, but it should level out and go the other direction eventually.   So, Dr T says, while my symptoms are improving, my underlying condition, ie, cancer, does not appear to be responding to this particular hormone therapy...

That is disappointing.  Even more so as roughly 60% of patients (with hormone-receptive advanced breast cancer like me) have some response to Arimedex-- either reversal or stasis of the disease.  And those who don't, have a somewhat lesser chance of having other hormone therapies work.  Not good news, my friends...  and all the more mysterious, because as I have said, I feel so much better.

Dr T has ordered another CT scan this week to look at my liver and see if the current therapy has made any visible impact there.  If not, he will change my hormone therapy to something else--- uh, something with starting with an F and ending in a max, maybe?  Anyway it is another hormone therapy that works a different way and is delivered not by pill but by injection (just bend over, Ms Hukari, and hold...)  once a month.

If that doesn't get some results from those darn tumor markers, he proposes to join it with a one-week-on/one-week-off regime of an oral chemotherapy pill whose name has also conveniently slipped my mind.  It is an off-spring of the time-honored and well-named chemo drug 5-FU, but Dr T assures me it is very well tolerated in these small doses-- no hair loss, no nausea, etc.  He thinks we could do this regime for, say 6 months to see if it can kick some cancer ass, and if it succeeds, drop back to the new hormone drug on its own...

It's funny how quickly we adapt to whatever routine we have and resist having it changed.  Or is that just me?  It is all so mysterious and precarious this life of ours, that I think we develop some kind of belief in our routine to ward off danger-- and by that we mostly mean change.

Looking around the infusion room (aka, Chemo ward) today as I got my Zometa (bone strengthening medicine which while delivered by infusion is NOT a chemotherapy drug), I noticed how patients and staff alike greeted one another with deprecating humor, like neighbors who meet frequently at the corner store might.  Feeling grumpy with my cold and my news, I was not interested in small talk and wished I'd brought my ipod-- that great leveler of personal interaction with the world around one.

But as I looked around me I couldn't help but know that each of these people-- including the nurses-- all have their own battles going on-- in their bodies, their minds, their thoughts and emotions and spirit.  Does this friendly frivolity deny that or make it more bearable for them?  Does it dull them or awaken them to what is going on?  And which would my beloved ipod do for me?  Chemo in particular asks such a terrible question:  How much poison are you willing to swallow and in exchange for what?  For some it is the possibility of a cure, for others a lessening of pain, or of a few more months.

Perhaps that is the biggest mystery.  I don't know how my fellow beings make these choices.  I don't know how I will make them myself.  But when the chirpy nurse bids me to "Go out there and enjoy this beautiful weather," I do not bark at her.  It is beautiful out.  My cold and my news do not change that. The world goes on.  Most mysteriously.

And then we went to the coast...

And we all had a wonderful time...

10-10-10

We did it!  We got all eight of the Gordon-Hukari cousins in the same place at the same time, along with food, wine, and photos featuring our long-gone twin mothers, Marian Gordon Hukari and Helen Gordon Hukari.  Stories were told (or, in many cases, retold).  We laughed.  We cried.  Mostly, we loved and appreciated one another and the gift of family which was both twins' greatest legacy to us all.

Thanks to all of us for making it happen.  I love you guys.  Your mom done raised you right.

a kiss to all my lovin' gordon-hukari clan (and no we don't know which twin is which...)

Bon Jour, Indeed

I am back from the hospital early because my chest x-ray confirmed what I have been feeling the last few days--  my breath is much easier meaning there is less fluid in my pleura than there had been...  It is not all gone, there is still  what Dr Moon called a "moderate amount", which is less than there had been, so he gave me the choice:  I could choose NOT to do the procedure TODAY. Of course, if the fluid builds back up again, it may still have to be done. And no telling if that might happen in a week or a month or-- who knows?-- it could be that the hormone drugs/hippy supplements are kicking in and allowing my lymph system to drain more normally. We don't know. But, according to Dr Moon I do not lose anything by waiting to see what happens.  They can fit me in pretty quickly and easily if I need it done in the future...

SO. I am willing to wait and see. (After all when I talked to Dr Moon last week, while he would not promise me not to nick my lung during this procedure he did concur that one could not rule out a miracle happening which would preclude my even having to have the surgery in the first place.) At any rate, this is the first indication of any of my current cancer-related conditions reversing itself, so that has got to be good news.

Plus-- now they are willing to tell me-- there would have been "some discomfort" for the first few days while one's body gets used to having a plastic tube sticking out of it... Now I get to enjoy my mom and her twin sister my Aunt Marian's special birthday celebration (10-10-10!) with the good cousins and the trip to the coast with my sisters without having to hassle with that extra appendage -- and I get to breathe, too!

Lori, Gale and I celebrated by skedaddling out of the hospital and eating breakfast at "le Petite Provence" in The Dalles.  (I couldn't help but think about my friend many miles and a world away on the streets of Paris as of today... )  But truly I could not have been happier with my double-short americano and croissant in this tiny little faux-french, truly provincial cafe on another beautiful fall day in the 'hood.  Better then a sharp stick in the lung.  Take it from someone who knows...

"Be Grateful to Everyone"

This is one of the Lojong or Mind Training Slogans used in Tibetan Buddhism.

I first came across the slogans posted on the walls of Gampo Abbey during the month-long retreat I did there in 1991.  I pondered them  like Zen koans while taking off my boots and hanging up my coat in the entry.  I suspected they were part of a teaching that took place at the Abbey prior to the start of dathun I attended.

The meaning of some slogans, like the one above, seem relatively clear at first glance, but  there are others-- like, "Keep the three inseparable," or "Whichever of the two occurs, be patient,"-- which obviously require some instruction.  I was grateful when Pema Chodron's book, Start Were You Are, came out in '94  offering insight into the slogans.

"Don't transfer the ox's load to the cow."  

This slogan appealed to me immediately-- I appreciated its non sequitur, out-of-time quality, but I had no idea how to make heads or tails of it.  What can this possibly mean?  I have come to understand it this way:

You cannot expect someone to do what they cannot do-- and you shouldn't ask them to.

We all have strengths and weaknesses.  And, truthfully, if we are  really paying attention, most people will tell us just exactly who they are.  But often we are not paying attention.  We are thinking of the next thing we'll say, or wondering what that person thinks of us, or we may may even be a million miles away, wondering where they bought those great shoes, and if they come in our size...

My own fall-back position is to automatically assume everyone else is kinda like me, with my same quirks and idiosyncrasies, and a similar world view-- (after all, its the one that make sense to ME!)   It is always a bit of rude awakening to discover, Oh, right, this is a whole other person, with a whole other world going on in their head.  

I find that the closer I am to the person, the more surprising-- maybe even threatening-- it is to discover our differences.  It reminds me of  E.B. White's Charlotte's Web,  one of my favorite books about friendship:  Gentle Wilbur (the pig) has to come to terms with the fact that his new BFF, Charlotte (the spider), actually DRINKS BLOOD!  Why does she do that?  Because that is who she is.  She couldn't change that for him even if she wanted to.  Wilbur's love for Charlotte expands beyond his idea of who she is and comes to embrace the reality of who she is.  ( Thich Nhat Hahn calls this a person's "suchness."  I love that expression.)

I had a glorious weekend with some dear and wonderful friends.  It reminded me again of how lucky I am in that regard:  I am well-loved-- and by that I mean I feel known and appreciated for who I really am.  That has been remarkably consistent in my friendships and, when I remember to remember that, I am overcome--and I mean like truly pounded into dust-- by gratitude.  It makes being alive worth the hassle and heart-ache.

But the slogan is not "Be Grateful When Your Friends Love You."  Most of us do not need a reminder for that.   But, "Be Grateful to EVERYONE"?

There is a story about a famous Buddhist teacher who had a terrible tea-boy.  He was rude and lazy and disrespectful, but the master kept him until his death.  Why?  Because the master considered his servant to be his teacher;  the tea-boy, in bringing up the master's irritation and impatience, was kindly showing him where he was still clinging to the world as he would prefer it, rather then embracing the world as it is.  So the master saw his servant as  an essential part of his path, as the gift of a generous universe to help guide him toward the highest good.

Contemporary Zen teacher Jiko Beck says relationships don't work.  Or at least they don't work in the way we usually interpret that phrase.  We are happiest when our relationships are comfortable, like an old shoe.  But the purpose of relationships, according to Beck, is exactly the opposite:  They generously show us our rub spots-- the places where we are not comfortable, our rough edges.  And by constantly rubbing those precise spots, relationships offer us a powerful tool and a tremendous gift-- if we are willing to accept it:  They show us precisely where we hold back and where we might consider letting go. They are like personalized maps of our path to enlightenment.

I am not saying I am always open to using my irritation and aggression as a map of where I need to do even more road-work, thank you very much.  I am particularly susceptible to wondering why I seem to be the one who always has to fill all the pot-holes-- isn't this a two way street, after all?  (To stretch my metaphor to near-breaking point.)

But working with the slogan can give me pause, which is a good thing when we are about to spin off into habitual reactions:   It can remind me to remember what gratitude really feels like.  And it asks me to consider how I might possibly be able to convert whatever I currently see as an obstacle into part of the path.

And in attempting to accomplish this, I have found it very helpful if I can  learn distinguish my oxes from my cows...

Give Me the Straight Dope

I am wending my way through the labyrinth of Oregon's Medical Marijuana Program.  Wow, was someone high when they put this together?

As you may have gathered, I don't feel very good a lot of the time.  Cancer cells have this way of robbing energy from your body to fuel their own selfish little orgies-- where they produce even more cancer cells.  In Sherwin B. Nuland's remarkable book, How We Die, he characterizes cancer cells as rebellious juvenile delinquents:  They never take on the adult responsibilities that mature cells perform in whatever community they are born into (the breast, the liver, what have you).  Instead they stay forever young and are only interested in partying and reproducing.  (My friend said, "Oh, they're Oklahoma teen-agers!" She's an Okie, okay? So, don't hate, appreciate...)

But as I was saying:  Cancer cells don't play nice.  And when they decide to party at your place they go after the good stuff: They want your protein, ie, lean muscle mass-- they are not interested in your cheap and...uh... possibly abundant flab.  So that "energy" (aka the entire back catalog of previously consumed M&M's) that your super-smart body has been "storing up" (in the form of body fat) for just such a rainy day?  Cancer is NOT interested.  So cancer patients can starve and still shop at the fat lady shop.  The disease that keeps on giving....

What does this have to do with my God-given and State-sanctioned right to spark a doobie?

Cachexia (from Greek kakos and hexia: bad condition) or wasting syndrome:   Loss of weight, muscle atrophy, fatigue, weakness and significant loss of appetite... The formal definition of cachexia is the loss of body mass that cannot be reversed nutritionally: even if the affected patient eats more calories, lean body mass will be lost, indicating there is a fundamental pathology in place.   

It is a positive risk factor for death—meaning that if the patient has cachexia, the chance of death from the underlying condition is increased dramatically.

Here's the rub:

Currently, there are no widely accepted drugs to treat cachexia and there are no FDA-approved drugs to treat cancer cachexia.

What does seem to help?  Uh-huh.  Marijuana.  It may not be curative, but, as jazz musicians through out history can attest, shit sure is palliative.  And in the advanced cancer game, that's what we've got to work with: treatable, not curable.

Granted, that is a bit of a conundrum.  Maybe that's what inspired Oregon's current Medical Marijuana laws, which grant me the legal right to possess dope, but not to acquire it.   I have to tell the state who and where my grower is (as they are subject to a criminal background check), but the state will in no way help me find a single seed to grow the stuff myself....  Under these laws who else except a criminal could possibly supply me with my medicine?

Put on your crazy hats, everybody, cause I'm gonna try to find out:  The very nice lady on the other end of the phone is trying to help me, I can tell.  It's just that I haven't had to interpret this kind of  "oded-cay anguage-lay" since I was about seventeen.  The pass word seems to be "networking."  Once I "ill-fay  out my orm-fay"and send it (along with a check or money order for $100), the state will issue me a number and mail me a card.  Then the nice lady can help me find places to "network" with "donors."  Jesus, this sounds like some kind of nightmare mash-up of speed-dating and sperm banking.  I hate networking!

Truly, if I didn't have some prior knowledge of the underground recreational drug-use community (Research, people!  I was an actor doing research!) I might be flummoxed by all this wackness.  All I can say is I better score some killer chronic, man-- for real.

Me and My Lung-Bag

In Our Last Episode, 9/15/10:  

Our heroine goes for a thoracentesis to drain the fluid that cancer-clogged lymph nodes have caused to collect in the pleura, ie, sac, around her left lung. After draining 2-plus liters of what looks like slightly stale amber ale, a One-in-a-Hundred-Chance Boo-Boo results in the plastic drain tube puncturing a tiny hole in the lung itself...

This Week: She checks in with her oncologist. Was it all worth it? Uh...

I wish I had better news.

The fluid is back in my left pleura-- as much if not more then they took out on the 15th. Damn. Dr Taylor assured me (more than once) that this is NOT an indication that the meds aren't working-- it is too early in the game to be able to deduce that. Just because the hormone has not reversed this effect of the cancer YET doesn't mean that it won't or can't do that in the future.

In the meantime, they need to get the fluid outta my lung-bag. Again. I am decidedly and understandably NOT interested in doing another thoracentesis, which is fine with Dr T-- that is not what he would recommend anyway. Given how much and how quickly this fluid has built up, he thinks we have two options-- both involving day surgery that would put a tube in my chest. After that I have two choices:

Option 1: Stay in the hospital for maybe 5 days while they pump/drain/suck the fluid outta me, and puff some talc in between my lung and the sac to encourage them to stick together, eliminating the space where the fluid currently collects. (Not sure where it goes, but I didn't think to ask that.) OH-- and if that doesn't work, they'd have to try Option 2 anyway...

Dr T agrees that Option 2 is the better choice: They put in a slightly smaller tube which I can drain myself (with the help of a Home Health Visiting Nurse. or any other interested party who could be easily trained by the same) every ?? Uh, once in a while??

This could go on for weeks (or months) as needed until (we hope) the fluid stops collecting. Which, as I said, Dr T thinks it SHOULD happen if/when the hormone therapy has time to do it's fluid-build-up-stopping job. The biggest risk here is infection, but it is relatively small.... OH-- and sometimes it's painful when you get near the end of the draining. (Copy that!)

Yeah. I don't like it either. I don't like procedures in general, as you all know, and I don't like to see them stacking up one on top of the other like this.

But the alternatives aren't pretty. If I just leave this be, eventually some equilibrium will be struck between the amount of fluid my pleura can contain and the amount of room left for air in my lung-- but that leaves me feeling kinda shitty all the time and could prevent my lung from ever expanding back to it's full capacity if/when the fluid were to stop collecting. Or I could do chemo to in hopes of blasting through the cancer-clotted lymph nodes-- but that has less promise for a long-term positive outcome then hormone therapy-- and is highly toxic in the short term.

Decisions, decisions. I think I'll take the marble fudge, I mean the fuckin' chest tube at home drain kit.

Momma always said, "This too shall pass..."

Cue Music. Cut to Commercial... And we're out!

Resistance and Loss

"Resistance is futile,"' my yoga teacher says to me.

She has to say it a lot. Because, as I admitted to her yesterday, I am a connoisseur of resistance. It's many moods, flavors, colors, textures, the many subtle nuances that unfold themselves to those of us who know it well. Believe me, those oenophiles have nothing on me...

Lately my flavor du jour has been the kind of big, broad-stroke, child-like resistance that I have recently had the opportunity to observe in an actual, living 6-year-old child; the kind of resistance that reminds me of the famous exchange Marlon Brando's character had in a movie (The Wild One):

"What're you rebelling against, Johnny?"

"Whaddya got?"

Exactly. Whatever you've got, I'm against it. It is common for this to be my first response to most things, as I've discovered from years of careful observation of my closely guarded private thoughts (aka meditation). I remember a meditation instructor telling me that the irritation that arose in me as resistance to certain rituals that we followed day after day after day in a month-long meditation retreat was "an intelligent response." I don't think she was complementing me. She was just commenting on our human tendency to react to the same-old same-old over and over again. Just noticing. That's what is intelligent in such a response.

Recently my resistant reaction is totally outsized to the situation. This also reminds me of the 6-year-old I had under close observation. I object so strenuously, and become so wedded to my objection that it seems impossible to give it up--even after it is clear to everyone, including, finally, me, that my objection has long since become obsolete. The only reason we can't move on is that my inner 6-year-old is still screaming NOOOOO!

Shit. Now what do I do? I can't back down, damnit. And there I am stuck and stranded in my own resistance, "hoist by my own petard," as my mother would say. (Yeah, she could quote Shakespeare, too.)

In examining our shared experience I asked myself, what does the 6-year-old get by saying no, even beyond the point where no is what he really wants? The answer, of course, is control. He gets to say no, therefore he gets to be in charge of his experience. Intelligent response, yes? And as I've been telling acting students for years, saying no only means you get to stay right where you are. Everything interesting that will ever happen to you (onstage, certainly, and maybe in life) comes from summoning the courage to say yes. Yes to whatever lands on your door step. Yes means you are willing to enter into an improvistional relationship with the universe.

Because the real grown-up truth is that we are not in control of nearly as much of our lives as we like to think. And our desire to control-- what happens to us, what other people think, or say, or do, the situations we find ourselves in-- well, it contributes to our suffering. We cannot control what happens to us; We can control how we respond to what happens to us. At least, ideally, we can...

So what am I so desirous to control right now? Oh, lots of things. But let's take the one that came up for me in yoga: Loss.

We all experience loss all the time-- big losses and little losses. Lots of people get sad this time of year about the loss of summer. (Even if we have every reason to think we will experience summer again next year.) We lose things all the time, regardless of our desire to hold on to them. Heck, I regret the vegetables I throw in the compost: But I wanted that avocado! We bump up against impermanence everyday, and often we just shrug it off: Things Change.

But some losses can really shake us, really wake us up. When we lose a loved one, a friend, a dream we held dear, when we lose something we've come to assume as part of our identity-- a job, a spouse, a home, an ability or aspiration. Who am I without this part of me? How do I let this go?

My experience with this cancer recurrence feels like something has snuck up on me and started taking parts of me away that I did not know I would be saying good-bye to-- or at least not this soon. (If we are ready to say good-bye, then perhaps we aren't losing something so much as letting it go. Which I think is a different although possibly related experience, but we can debate that another time.) But coming to terms with a disease which will likely kill me-- unless a bus gets there first or something, as could happen, let's hope not, to any one of us--coming to terms with the losses that start to tally up even this early in such a journey can shake me to my very core.

Something as simple as a forward fold -- you know, you just stand with your feet hip-width apart, and bend over letting your arms and head reach towards the floor-- an utterly simple and, historically, an utterly satisfying position for me. I can't do it right now. What was so right feels all wrong. I am too "sloshy" (see earlier post for explanation), it's too challenging to breathe, it is just too fucking uncomfortable. And to lose something so simple and so comforting-- something so familiar that it never occurred to me I could lose it-- was devastating. I wept like my dog died. And you know how I feel about my dog...

So, I am left to ponder the correlation between resistance and loss. Does the size of the resistance equal the size of the loss? That seems both too simple and too knowing. And gives too much power or credence to resistance, which is, after all, as Meg has been telling me for three years now, futile. Acknowledge the resistance and move forward anyway. Forward into loss? Yes. What else were you born for? Forward into whatever it is that happens next.

Practice Like Your Hair is on Fire, or Why I Want to Do a Three Month Meditation Retreat in Nova Scotia

I just sent off my application for the Winter Yarne being taught by Pema Chodron at Gampo Abbey, January-March 2011. Here's my essay:

My first encounter with breast cancer was in 1997. I was not yet forty years old. I addressed it with surgery, naturopathy, and Tradition Chinese Medicine, including Tai Chi. I’d been through Shambhala Training nearly ten years earlier, and had done a dathun at Gampo Abbey in 1991. Now, I took refuge vows. I did a three-week retreat at a mountain cabin with two “hand maidens,” as we called my friends. I meditated under the same pine tree every day. I saw this episode as an invitation—or maybe a demand—to decide for myself how I thought life—both with a big “L” and a little “l”- worked, and how I wanted to work with it.

When I had a local recurrence in 2004, a naturopathic specialist told me that if I would ever consider doing chemotherapy, she would recommend I do so now. I did. I also had more surgery, radiation, and hormone therapy. At this time I was living with and caring for my aging father in the small orchard community where I’d grown up. My friends from the city took turns coming to stay with and look after us both. I learned a lot about giving up control.

Breast cancer made a dramatic reappearance in my life this summer. It had already been a hellish year: I traveled to take what seemed like a dream job that turned into a nightmare: I couldn’t find a place to live, negotiating the college computer system I relied on was a daily battle, my students hated me. My dog got cancer. Legal battles over my father’s orchard became increasingly bitter. Dear friends were disappointed in me. I was disappointed with myself. I returned to my now solitary house in the middle of winter and watched the surrounding pear trees ripped out by their roots, sick and dispirited. I fell into battle with my old foe, depression.

My one thread of sanity through all this was the yoga practice I started with Meg Becker in October of 2007. I’d been meeting with her regularly one-on-one for two-hour sessions, one to three times a week. Through my work with her, I had been coming into a more fully embodied understanding of many of the ideas I recognized from my years both on the cushion and reading the work of Chogyam Trungpa, Pema Chodron, Jiko Beck and Thich Nhat Hahn. My practice became not to resist my depression, but to develop compassion and curiosity about it, work with it in whatever way I could. Some days I was better at it than others.

“Notice the unkind mind,” Meg said to me, over and over, week after week. How unkind my mind could be was a revelation. It is one thing to contemplate compassion, quite another to do the heavy lifting required to actually apply it.

Cut to this July: When I was diagnosed with a pericardial effusion—a build up of fluid in the sac around my heart—and told it could be the result of breast cancer metastasis—all I could feel was NO. I call it the Big No. I did not want to go to the ER. I did not want to see a thoracic surgeon in the city, right away, now, tonight. I did not want any of it. I did not have it in me to face another health crisis. I’d been to this rodeo --twice already-- I knew what it took, physically, psychically—and I knew I just did not have it in me.

Coming out of the hospital days later, I felt like my spirit was a tiny kite tied to a huge hunk of dying meat. I did not even smell like a human being. I hated every thing about my existence. I wished that I had crawled under the porch like our old farm dogs did when they knew their time was up. That seemed to hold more dignity, more integrity than my current situation.

Meg says I was born a feisty spirit; I know that I have always been uncompromisingly truthful about my experience. (To my detriment, no doubt, at times—certainly to the discomfort of others.) Still, it is one of the tenets that drew me to Buddhism, the need to rely on one’s own experience. I will not, cannot fake a yes when all I’ve got is a No. So, now what? What do I do with this Big No?

I did not have an answer to that. I had to live with no answer. I knew that saying No to life, saying No to my experience, would not really stop or change anything. It was childish. But it was my deep-down honest gut response. It would not budge. It sat on my heart like a stone. It was ugly, it was sad, it was nasty—it was NOT spiritual in any sense of the word that I could understand. It offered me nothing. But once I could approach it with some gentleness instead of fear, distrust, disgust, contempt—once I could say even the smallest yes to my Big No, it started to shift. I did not know that would happen. I have to call it grace. I did it not out of any sense of spiritual wisdom—I did it because there was nothing else I could do.

I have always said that I am being dragged kicking and screaming towards enlightenment. My experiences on the cushion, in my studies, in my life keep pulling me forward and I don’t want to dig my heels in any more. I want to spend three months at Gampo Abbey because I want to get even closer to my Big No, and have even fewer distractions from it. It still scares me. I am not free from its grip. But I have tasted what that kind of freedom might be like. I think of it as a bigger container, a more spacious experience of the world. And if I am to be of service to myself or anyone else, I need to invest more time and attention in developing my tiny yes. Now is the time for me to practice as if my hair were on fire. This is what I hope the Yarne will help me do.

I don't know when I find out if they will offer me a spot. The applications are due by Nov 1st, and I sent mine off today. So. My part is done.

The Four Limitless Ones

At the three-month winter retreat (called a Yarne) at Gampo Abbey in Nova Scotia, Pema Chodron will be teaching on "The Four Limitless Ones." She describes the four qualities this way:

May all beings enjoy happiness and the root of happiness.
This first line refers to maitri or loving-kindness.

May we be free from suffering and the root of suffering.
And this second line refers to compassion.

May we never be separated from the great happiness devoid of suffering.
This refers to joy.

May we dwell in the great equanimity, free from passion, aggression and prejudice.
This refers to equanimity.

She goes on to say:

"... each of us has these qualities already, but possibly in a rather limited amount. They're called The Limitless Ones based on the premise that we start with the amount we have, no matter how limited it is, and we begin to nurture what we have, and then it will expand by itself until it's actually limitless, beyond limits."

I found this online from a talk Pema Chodron gave in Berkley. You can read more here. And if you are curious about what a Yarne is, or how it works, or you want to find out more about Gampo Abbey you can click here.

Sometimes It Sucks

Okay, well the only point in really doing this is to speak the truth of my experience. And the truth is sometimes it sucks. Feel free to skip to the end of this post unless you want the shitty details. No hard feelings-- there are many, many times when I would fast forward to the other side of this particular experience if I could, and those are the times I am about to possibly "overshare" with you.

Here's the thing: Not only are there days when I feel like shit, ie, tired, overwhelmed, pissed off and sad-- along with strange, hard to isolate or describe physical complaints like "sloshiness", ie, the feeling that there is extra liquid sloshing around in my abdomen--a most disconcerting and uncomfortable sensation-- but there are days when even the thought of trying to tell another human being what it feels like to be me under these circumstances seems an insurmountable obstacle. Why would I try? How is that helpful-- to me or to anyone else?

The answer is, of course, that being able to share with other human beings makes us feel less alone. Even just putting words to our experience can help: 'The worst is not, So long as we can say, 'This is the worst'. ' (That's Shakespeare, yo, one of my top all-time go-to guys on the power of language.)

But sometimes I can't do that. It is just too much, language fails. And that makes me even sadder. And adds even more to my sense of isolation. Sometimes it sucks to be me, to have cancer, to have to navigate the tricky landscapes of health care, finances, relationships, and just unloading the fucking dishwasher when bending over makes me feel like shit. Acknowledging all this can make me feel like a big whiner. Which can really start the Ferris wheel of hatred spinning.

"Beware the unkind mind," my yoga teacher says.

Yes. But. How do you stop this Ferris wheel? Sometimes I feel like a cartoon character who falls through one awning after another, down, down, down the rabbit hole (to mix my metaphors shamelessly), one reality after another giving way beneath me. And I am supposed to embrace them all, as they shift, with equanimity, with grace, with open arms.

Well, "suppose" is a terrible choice of words... It implies "should", which anyone who's picked up a self-help book in the past 50 years knows is NOT helpful. But it is the language that springs to mind to talk about how I would "rather be" vs. how I am. But embracing how I am-- shittiness, suckiness, sadness and all-- is the only way out of this rabbit hole. And that kind of compassion takes all kind of grown-up-ness that I can barely muster on my good days.

Facing what I find unbearable-- in myself, in my life-- with tolerance, kindness, gentleness is the only way anything moves in this nasty little equation. It is the variable. And somedays I cannot find it. Other days, just being willing to try to find words for the experience helps. And that is another reason to commit to this blog, to encourage myself to try to find the words, hoping that will lead me to find compassion.

I'm Still Here...

It's been 68 days since breast cancer made a dramatic reappearance in my life. I've decided to write about it for two reasons: One, reading and writing has always been the way I wrap my head around my experiences, and when I ran smack into this one I longed to read something some previous traveler may have left as a kind of guidepost. It helps to know others have gone before you, it makes the terrain less lonely. And two, I want to give my friends and family a place to get easily updated on whatever the news is in my little corner of the universe.

But that's it for now. Starting is hard work.

"May all beings be free of suffering and the root of suffering."