Friday, October 29, 2010


 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...

Tuesday, October 26, 2010

Dr's Orders, Y'all:


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.

Thursday, October 21, 2010


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.

Tuesday, October 19, 2010


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.

Friday, October 15, 2010

And then we went to the coast...

And we all had a wonderful time...


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...)

Wednesday, October 6, 2010

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...

Monday, October 4, 2010

"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...

Friday, October 1, 2010

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.