Wednesday, March 30, 2011

Cancer Fair, Part 2

I don't get conferences.  I mean, I know they happen everywhere-- Conference Centers and Convention Centers dot the urban landscape and must be filled with people convening about all kinds of things, all day, every day.  But then board meetings and committee meetings happen all the time, too and I have seldom been to one where I felt like something actually got accomplished.  They make me itchy.

I recognize that I am the odd one out here.  They must work for most people because they remain the primary model, but I just don't get it.  Give me Grief Fest any day:  I can see and sense and intuit how change is being effected there.  But as comfortable as I am in that paradigm, most people seem comfortable in this one.  C'est la vie. (It reminds me of my first lecture class at Oberlin after a year at The Evergreen State College, where seminar was used as a verb.  I was dumb-founded when I entered a lecture hall and fifty students all opened their notebooks at the same time the professor opened his and proceeded to write down in their books whatever he read out of his book.  I nearly laughed out loud. Why not just loan us his book and be done with it?   But it was not long before I heard some brilliant lecturers at Oberlin and I found that thrilling.  Having someone with so much knowledge at their fingertips seeming to think out loud, on their feet, making new and stirring connections right in front of you, well, no surprise I would find that thrilling, I suppose.  Even now the word I reach for to describe it is sexy-- okay, yeah, I am a freak of nature, sue me....)

Meanwhile, back at the Convention Center:  I line up (alphabetically by last name like at the old polling centers) to sign in, get a-- whachamacallit? lanyard! bright neon pink, naturally -- with my name, title ("Survivor"), and the sessions I am to attend printed on the attached laminated card, a multipage plastic-covered and bound "program", and a card redeemable for my lunch. ("Vegetarian Salad" which seems a bit redundant to me, but hey, at this point, what don't?  Do I smell a committee at work here?)    I am directed to enjoy free coffee and tea in the  Exhibit Center before the Keynote Speaker kicks things off in the main auditorium.

Okay!  I step into what feel like the midway of a fairground.  BOOTHS!  Of course, there are booths!  Largely manned by employees of companies with something to market to breast cancer patients-- wigs, post-op brassieres, plastic surgery, hospitals, surgical centers-- even a bank!  (I guess that where you spend you cancer dollars matters...)  All these "professional" booths are colorful, 3-D, stocked with pink ribbon tchotchkes to give away and raffles to sign up for in order to win more free goods. Ah, consumerism! True life-blood of the Conference paradigm!  Thanks, Starbucks for the free coffee, here is your plug on my tiny trickle of a web-site.

In this melee of pink, three booths caught my attention:

The first was called Matt's Chemo Care Bags.  Manned by Matt himself, a handsome and well-spoken 18-year-old who got the idea of giving away these "care bags"-- a soft blankie, cosy socks and hat, lotions, and so forth-- two years ago when he saw how much his own mom was comforted by a similar gift she received during her chemotherapy.   Now he has a registered 501.3c and gets funding to give these away to other woman under going treatment.   Two years ago he was 16, ladies and gentlemen.  Imagine that.  And now he is devoting his Saturday to this room full of middle-aged women wearing headscarves.  (Well, he admits, his sister is coming in this afternoon to spell him.  He's the catcher and DH on his baseball team...)  You are one remarkable young man, I tell him, but I bet you hear that a lot.  Yeah, I get that... he says, his head hanging down.

Next up, a booth called Rachel's Friends.  Never heard of them.  I was attracted by its lack of shiny pink things.  Then I saw what it was all about:  Rachel Carson, famous for the first anti-DDT book Silent Spring (oooh, my dad, like most farmers I knew, hated her!) died of breast cancer.  I did not know that.  She was also a crusader for research into the environmental causes of cancer.  I was so happy to see that point of view at the table at a Komen-sponsored event.  I have done my fair share of Racing for the Cure and have been troubled by all the chemical companies decked out in pink as major corporate sponsors.  Gee, you have a stake in creating commonly used chemicals which -- as Kathy Griffen would say -- allegedly contribute to causing cancer, AND you make the pricey chemotherapy drugs used to treat it as well--- Uh, do you really have a horse in this race?

I happily slapped down a dollar (and my coveted email address) in return for the best bumper sticker I have seen in sometime:
You Can Race for the Cure, but You Can't Run from the Cause
(Which is even better when you know that the right-leaning Komen Foundation has threatened to go to court to keep other cancer-fighting organizations from butting in on their exclusive rights to the phrase "Race for the Cure".  How philanthropic is that?)

The third booth I visited was a bare white table with three books on top and a single woman behind it.  I told her I came over because she looked lonely.  She said, thanks.  Then I said, no really I also came over because I've been to A Woman's Time, the naturopathic clinic she represented.  They specialize in women's health, and with breast cancer.  I sought their guidance during my second round with cancer and they helped me prepare for and endure the onslaught of chemo and radiation.  I am grateful they were there for me, grateful they still exist, grateful they would show up here, and I just wanted to let them know that.  She appreciated my saying so. When I walked away she was all alone again. But the booth where you could sign up to win a free lacy push-up mastectomy bra was packed.

Next up:  The Speakers!  When Cancer Fair Continues....

Tuesday, March 29, 2011

My Day at the Cancer Fair, Part One

Sometime in February I was contacted by Selma Annala, a family friend who works with the Cancer Healing Center at Legacy in Portland, with a request to use something from my blog as part of a presentation to be titled "I Am Not Just My Disease"-- part of a program on metastatic breast cancer.  Of course I was flattered and happy to oblige in any way I could.

A brief email correspondence ensued with Kathleen Moneymaker (who instantly won my heart by signing her emails Kathleen $$-- how adorable is that?) the palliative care nurse who was putting this particular presentation together. I sent her links to my blog entries, she selected The Parable of the Dead Mouse, I was thrilled.

In early MarchI got an email from the Susan G. Komen Foundation announcing the 2011 Breast Cancer Issues Conference in Portland on March 12th.  Could it be this be very same conference I had been asked to contribute to?  Why yes, it turns out it was!  I contacted the Komen Foundation for a scholarship ($60 is $60 after all, and my income is well, less then that...), then told Selma and Kathleen that if I got in, I would be happy to be part of presenting my story if they thought that appropriate, and bodda-boom, bodda-bing, bobs-your-uncle, next thing I know I am driving around the Oregon Convention Center looking for the parking entrance.

In the interim, I had called Selma after talking to a friend of a friend of a friend who was dealing with her first and rather dire breast cancer diagnosis.  I had done a lot of listening during that phone call and, in response to her questions, a lot of sharing my own story of this journey through the other-worldly landscape of being a cancer patient/survivor/patient.  I spent over an hour on the phone.  My heart went out to this stranger.   And yet, when all was said and done, I felt like I was able to be of such little help.  I can not give or even lend anyone my experience, it is mine, and they have to forge their own.  We each have to craft our experience out of who we are and what we are given and what we then choose to make of that.  Knowing that, my question became "How can I help?  How can I really be of service?"

Selma gave generously of her time and accumulated wisdom from years of counseling, being with, listening to, and observing lots and lots of people as they navigate this journey with cancer.  She helped me see the subtle ways in which I was trying-- still trying, in spite of thinking that I knew better-- to get someone else to do it my way, ie,  the way that has worked for me, instead of recognizing that the trick is to help them find, validate, create their own way, the unique way that might work for them.  (Oh, yeah-- she is that brilliant.  And she didn't even make me feel stupid while gently guiding me to see the error of my ways...)

So, it was great to see Selma's face in the crowd at the conference, to eat lunch with her (me nattering away the whole time about how I long to nudge the medical community-- patients, staff, doctors, everyone!-- to incorporate mindfulness into their workdays), and just to know that such a smart, kind, funny, competent woman has our backs as patients.

I enjoyed meeting Kathleen and was happy to join her on the dais for the presentation-- especially after she confided in me that she had pictured a small group of us around a table, and was a bit unnerved at the idea of manning a stage in front of an audience all by herself.  She was smart and funny, thoroughly and thoughtfully prepared, and clearly guided by a desire to serve.   It was a privilege to be seated next to her.

I was also privileged to meet the volunteer/survivor who'd came up with the idea and title for the "I am Not Just My Disease" session, and to read a beautiful poem written by her dear friend about living with stage four cancer.

Looking out into the audience of maybe 30 people, mostly women, who clearly had some intimate relationship with metastatic disease, I could see my story register on their faces.  In some way, it was their story, too.  But of course we each have our own story, just as we must each find our way through our story, and after the session I told Selma that I thought we could have spoken to those women for half as long and spent the other half of the time LISTENING to them.  These people have stories that need to be HEARD.

As patients we are talked to (or more often talked at) All The Time.  That is how this paradigm works:  You come in, sit down, shut up and Someone Does Things To You.  This keeps the cosy barrier of You Are Sick/ We Are Not in place, and no- one need contemplate how alike we truly are in our shared helplessness concerning the great mysteries of Life and Death.

The very idea of a patient questioning or talking back to a doctor is relatively new.  I bet my grandma never did it.  Heck, even my dad went mute in that little room and generally he was pretty free about sharing his point of view!  And I know for a fact (because one of my more tolerant and amused doctors showed me the notes) that some oncologists, in particular, have not taken kindly to my uppity desire to have a say in my own care.

I had talked with Selma over lunch about the Free Listening Project (check out their website!) -- something my friend Janet and I had encountered by accident while walking around Greenlake in 2009.  A woman was sitting with a sign that said:
FREE LISTENING:  NO interruptions, NO judgement, NO advice.   
How wonderful is that?  We went up to talk to her.  And while she was happy to answer our questions, she let us know that talking about what she was doing was NOT what she was here to do.  I accepted a card with the above quote which I have carried around ever since-- along with this remarkable, simple, potentially revolutionary way to be of service.

I asked Selma:  What if, at the next Breast Cancer Issues Conference, where I assume, as with this one, there will be four rooms with different presentations all going on at the same time, there was a Fifth Room set aside for Free Listening.  It could be stocked with volunteers, and at any point during the conference anyone-- survivor, care-giver, professional, patient, spouse, child. parent, friend, ANYONE-- could come in and be listened to.

Imagine that.  Imagine what the mere presence of such a room would say to all the participants at such a conference about the primary importance of the PATIENT'S EXPERIENCE.  Yeah, this may be your career, but it is our LIVES we are talking about.  I am happy for your expertise.  I am grateful for it.  But when it comes to my life, my health, my body, my choice, my experience, the only possible expert is me.  And when I speak from that place, I deserve to be heard.

Shhhhh... yes, baby, I am talking 'bout a revolution.  And I am gathering allies:  Fellow patients, meditators,  yogis, nurses, counselors, social workers, Reiki masters--  any one with an interest in mindfulness and service.  People inside the system and people outside of it.

It is small, slow work, like water wearing away a stone.  But have you seen the Columbia River Gorge?   Whenever I drive to or from the Celilo Cancer Center in The Dalles, I witness first-hand just how powerfully water can sculpt away rock, and what beauty it can leave in its wake.  And I am inspired.  Let me be like water.  Let me be of service.

Monday, March 28, 2011

Poetry Potluck

A loaf of bread, a jug of wine and...
I just held the first-ever-as-far-as-I-know Poetry Read Out Loud Potluck.  And I have got to tell you, it was fabulous!   Seriously, if this idea rings any bells in your soul I highly recommend that you host one yourself!

For years I've attended the local birthday tribute to William Stafford, Oregon's former Poet Laureate-- an annual event which invites everyone to bring a favorite poem of his to read out loud.  It never fails to warm the cockles of my puny heart.  And for years I have been part of the local high-school's participation in the national recitation contest, Poetry Out Loud, sponsored by the NEA and The Poetry Foundation.  Add to that my occasional but passionate work with the Hood River Middle School's 8th Grade Poetry Slam, and well, you can see I might get to experience more live poetry then your average bear. It never fails to be remarkable.  RE-MARKABLE.  Truly.

So, this year after the Stafford reading, I floated the idea that we should do this more often, maybe read some other poets out loud...  Others concurred.   I floated it again after Poetry Out Loud -- after all some of the same adults have been volunteering for years now to spend a full day of their lives listening to high-schoolers recite poetry and none of us ever fails to say what an honor and a pleasure it is to do so.  More concurrence.  OK, bitches, it is SO ON!

I sent out the e-vites, had to cancel the first date due to an unexpected snow storm(!), persevered with e-vite #2, and lo and behold had over a dozen people show up last Saturday night with stacks of books and pages folded into their pockets and hot dishes, desserts, bread and cheese and wine to share.  As people drifted in (the invite was clear about the fuzziness of the starting time), I realized that very few of these folks knew more then one or two other people in the room.  Was that fabulous or problematic?  I was not really sure...

Maybe it is the power of poetry.  Certainly, it must be.  The crowd was self-selecting, obviously:  Why would you come if you were indifferent to the soul-stirring possibilities of the spoken word?  And stir souls we did, each in turn, one poem at a time.  Well lubricated with wine (and people brought the good stuff), and warmed with three kinds of soup, nourished with bread  and sweetened with chocolate, we went on to Round Two of favorite poems.  Then we turned off the electricity (in honor of Earth Hour), and the poetry continued in the dark!  People recited poems they knew by heart.  We extemporized limericks together, which lead, inevitably, the way that limericks tend to do, quite merrily into the gutter.  But, as that poet of the stage Tennessee Williams said, "Some of us were still looking at the stars!"

It was a glorious night.  Poetry can bring people together in the most heart-felt and enjoyable way.  Afterwards one guest used these words to sum up what several others had also confided in me: "You know, surprisingly, in a room full of 15 people, I really found every one extremely tolerable!"  Yes, friends, that constitutes HIGH PRAISE for one's fellow beings here in the early part of the 21st century.

And truthfully, I think I can say I have been drawn to poetry all my life for that very reason:  It makes life tolerable.  When life seems intolerable, I turn to poetry.  There I find redemption, beauty, companionship, courage and inspiration.  How wonderful to be able to find and share that with our fellow living human beings.  "Everything is connected.  Nothings lasts forever.  We are not alone."

a tolerable crew basking in the glow of spoken words
I hope someone from our circle will step forward to host another Poetry Potluck soon.  Maybe you'll want to start one yourself.  And maybe, if you are invited to one, you'll say yes before you say no.  The spoken word is powerful.  Listening is powerful.  Being present to one another in this way feels like communion. (But with chocolate in addition to the bread and wine!) It brings out the holy talk in me.  I threaten to get all revolutionary, evolutionary, and eleemosynary on your asses.  Look that up in your rhyming dictionary, bitches, and tell me, who's your mama, now?

Thursday, March 10, 2011

Down the Rabbit Hole

This week, I finally took my OMMP (Oregon Medical Marijuana Patient) card in hand and headed into the local clinic.  I got my card ("Give Me the Straight Dope") back in October, but I've only darkened the door of the local clinic twice and both times they were not open.  (The last time there was a note written with a sharpie:  Closed due to illness back ASAP-- Bob   Hmmm...  And just when did that note go up?  Today?  Yesterday?  Last week?  Hard to know.)

This time I was admitted entrance by a hulking gentleman who stood patiently by the instantly closed and locked door for me to get my card out of my wallet for his inspection.  He was "just helping out" he told me, because Bob is not back yet-- and the fellow doing business behind the counter, Bob's friend, is just helping out as well.

The place smells like weed (what do you expect?) but is clean and blandly professional.  It has two counters forming a L-shape with glass shelves reminiscent of the set-up at a Starbuck's.  One side houses all the tinctures, oils, butters, salves, lotions, sugars, "bubblegum" (don't ask, I have no idea) and the other holds about a dozen jars containing small amounts of various strains of dope, with labels like  Blueberry Skunk  and Sour Lavender  to the more ominous sounding AK47 and Wrecked.    The forth wall  displays a large bulletin board covered with photocopies of pertinent legal information-- all in 10-point font.   A  helpful magnifying glass dangles on a string nearby.

Besides myself, the customer who let me in and Bob's friend behind the counter, there are three ladies who obviously came as a group.  If I had to guess I would say it was a mother/daughter/friend combo.  Everyone tells me things might seem a little different as changes have been implemented and Bob is not back yet.  I reply that it is all new to me and ask where I should start.

The mother figure demonstrates how to use the lamp with a built-in magnifying glass.  What am I looking for?   Crystals, she tells me.  And indeed, under the magic light there are tiny dew-like drops on the dried bud.  So what does that mean?  The response is not clear, but I get that crystals are a good thing-- then one of the other ladies says she has not found crystals to be the most important factor.  How come? Well, it is all a matter of what you like.  And how do I know what I would like?  There are different flavors, one of the ladies offers vaguely.  (The names seem to bear this out, but never being much of a smoker of any substance, "taste" in not a big concern to me.) The mother then says that she also likes to feel the bud for dryness.  Why?  Drier stuff burns faster, she says, doesn't last as long.  If it gets too dry, I just put a slice of apple in with it, says another lady.  Or a leaf of lettuce, says the third.

All I know is I do not want something that just knocks me out, puts me to sleep or makes me paranoid.  The door man suggests one he calls "giggle weed"-- although that is not the official name on the jar.   Bob's friend says they are all out of that right now.

There is something about the whole atmosphere that feels  a little Middle-Earth/Hobbit-land to me.  I can hardly explain that sensation even to myself.  There is some slightly slower, kinder, gentler, and, yes, undeniably dopier vibe in this little world.  It is akin to the world outside, yes, but it is different. And there is something definitely earthy, organic or almost mushroomy about it.

Yet there is something familiar here:   I know these people; I recognize their clothes, their vocal mannerisms,  their lack of sustained interest in dental hygiene.  We frequent the same thrift shops, garage sales, and farm stands.  These are not hippies-- hey, I just did a Grief Ritual Workshop at Breitenbush, I am familiar with all your various strains of Oregon hippie, from old-school to the new dreadlocked version.  This is different.

There is a another vibe here that I am familiar with as well-- one I do not usually feel in the thrift store. It is the kind of thing that I suppose might happen if you were a regular at the neighborhood bar-- something I have never been---- but WAIT!  Coffee!  That's it!  The way my fellow coffee fiends line up with politely subdued and shared anxiety and anticipation of that very first sip of the day --   the good stuff!  We all know what we want, and we all know what it is to want it.  We are comrades, brethren, joined by our appreciation for our mutual drug of choice.

But I doubt I would ever find myself next to one of these people in line for a $3 latte.  (Although I do see the occasional better-heeled hippie of the old or young school there...) Is this a class thing?  Is medical marijuana a class issue?  Reading up on it, I am beginning to understand just how many other, more expensive (and dangerous) prescription drugs medical marijuana could conceivably replace.  And this is definitely a kind of DIY crowd, in fact many of them make reference to growing their own at some point in time.

Interesting.  All I can tell you is I gathered all the free material available at the clinic to map this uncharted territory.  Some of it is in a language that is foreign to me.  (And some of it seems crafted by people not wholly familiar with the conventions of the English language...) Like many explorers of new worlds, I cannot take anyone familiar with me.  My OMMP card is the open sesame and it closes the door tight behind me. It is a kind of shadow economy, a murky area of legalities, and a half underground community-- all operating in parallel with the more visible world.  It is a total head-trip-- even before I purchase and test the medicine this brave new world has made legally available for my benefit.

Wish me luck, friends.   I am going in.  I will proceed with caution and you know I will check back in with whatever stories I find down this rabbit hole.

Tuesday, March 8, 2011

Mary Oliver, Round II

The Uses of Sorrow
(In my sleep I dreamed this poem)
Someone I loved once gave me                                                                                                                      a box full of darkness.

It took me years to understand
                                                                                                                     that this, too, was a gift.

Sunday, March 6, 2011

A Word from Mary Oliver:


My work is loving the world.
Here the sunflowers, there the hummingbird—
    equal seekers of sweetness.
Here the quickening yeast there the blue plums.
Here the clam deep in the speckled sand.

Are my boots old? Is my coat torn?
Am I no longer young, and still not half-perfect? Let me
    keep my mind on what matters,
which is my work,
which is mostly standing still and learning to be
The phoebe, the delphinium.
The sheep in the pasture, and the pasture.
Which is mostly rejoicing, since all the ingredients are here,

which is gratitude, to be given a mind and a heart
    and these body-clothes,
a mouth with which to give shouts of joy
    to the moth and the wren, to the sleepy dug-up clam,
telling them all, over and over, how it is
that we live forever.

Tuesday, March 1, 2011

Scientific Proof!

Thanks to my old friend Berkley Lynch who posted this on Facebook, here it is, straight from the Science Daily mouth:

Being 'Mindful' Can Neutralize Fears of Death and Dying

My favorite quote:
"If mindful people are more willing to explore whatever happens in the present, even if it uncomfortable, will they show less defensiveness when their sense of self is threatened by a confrontation with their own mortality?   
In this laboratory staged battle, mindfulness alters the power that death holds over us." 
Now, how do we get the medical establishment in on this secret?  Imagine if mindfulness was as common in cancer treatment centers, doctors' offices and hospitals as the number of times a patient's "vital signs" are taken?  Even if just the medical professionals themselves had mindfulness training, how would that change things?  The mind boggles.  But it can do so much more!