Poetry Friday

Picture Source

let it go - the
smashed word broken
open vow or
the oath cracked length
wise - let it go it
was sworn to
go

let them go - the
truthful liars and
the false fair friends
and the boths and
neithers - you must let them go they
were born
to go

let all go - the
big small middling
tall bigger really
the biggest and all
things - let all go
dear

so comes love

~ e. e. cummings ~

28-Day Meditation Challenge

I'm very excited to announce a new project that begins February 1.  I have committed to Sharon Salzberg's 28-day meditation challenge and I am honored to be one of the bloggers discussing my experience in community.  This is her second year doing this, you can read last year's archives here.

The challenge is to follow Sharon's program as laid out in her book, Real Happiness: The Power of Meditation: A 28-Day Program.  The book is neither too woo-woo nor too advanced, it offers a framework that can enhance any level of practice.

As my own background, I started meditating in 2010 when I joined Simply Power Yoga.  The two practices tend to go together well, as they both focus on breathing and present time awareness.  In my experience, some yoga teachers utilize meditation in classes more than others and I feel lucky to have found a teacher who is gifted in meditation and yoga.  Gina Fennell talks about mindfulness and meditation in a blog post here.

There are countless ways to meditate but I have found that the simple ways Gina teaches work well for me.  She speaks my language too.  I once heard her describe meditation as, "Sit down, shut up and see what happens."  I've had people ask me how to meditate and that's the best way to put it.  There's no dogma and it's not a religion.

You don't need any special equipment, unless you want some.  I usually light a candle and set a timer, but anything more than that would probably just distract me.  I don't meditate as often as I think I should (there's that word again) but the beauty of meditation is that you can meet yourself wherever you are.

The point is to try to stay fully present in the moment.  If you're anything like me, your mind is constantly running between events of the past and plans for the future.  That's ok, that's what the mind does.  The Monkey Mind.  It's quite useful in its thinking ways.

But for a certain time, I shoot for 20 minutes, we ask our minds to step into the background and let our sensing self have a turn.  The most constant reminder we have of this moment is our breathing, so we concentrate on that.  Sometimes I count my breaths, or the length of my breath.  Sometimes I pay attention to where I feel the breath most strongly at the moment.  Sometimes I try to trace the breath in and out.  Of course I have been know to get lost in those "games" too, so it's a balance.

Eventually I let my other senses be known through investigation, like how my legs feel where the meet the floor, what the air feels like on my skin or what I can hear and smell.  Of course, that can draw you deep into mind stories.  Once again.  Balance.

And that's the crux of the practice.  When you are drawn away and realize it, you have the choice to come back.  To me, that is the moment of magic - when you choose to come back.  And make no mistake, I choose it over and over and over.  I consider myself a success if I can manage to follow one breath in and out without getting distracted.  No judgement of being a "failure."

You can't do this wrong.  There is no secret and it's hard as hell.  But the openings in my awareness have been awesome, and I just get little cracks here and there.  When I quiet my mind, I find that insights open up and my signature emotional turmoils calm down.

I am so looking forward to 28 days in a row, and writing about it.  I hope you'll consider joining me.

For further reading:

Highly recommend Sharon's book on which this program is based

Sharon's website - on meditations

Against the Stream - American Buddhism written in my native tongue (check it out and you'll know what I mean)

Improving on the Silence

"Before you speak ask yourself: Is it kind, is it necessary, it is true, does it improve upon the silence?" ~ Sai Baba

Journal Entry, 1/21/12

What I looked like 3 years ago
(I had chemo before my mx)

Earlier this week something tapped me on the metaphorical shoulder and said, Pssst.  Hey, pay attention.  Check the calendar.  

I checked my calendar and thought, Oh.  That's right.  How many years has it been?  

Three years ago today I had my double mastectomy.  I thought about a segment from Diane Rehm I heard once about how the body doesn't forget.  Diane was saying that she consistently got sick between the Christmas and New Year holidays.  It took her years to realize that with her body's reaction to grief; her mother had died years before during that week.  All week long I've been wondering how my body will react to this anniversary, an exercise that ended up dipping into the foolish land of How I Should Feel.  

Will I be grateful to be alive?  Probably no more or less than you are.  I never seriously considered the alternative during my treatment, although I know people like Ashley didn't either.  Three years ago she hadn't even met the unconquerable disease ravaging her body.  

But I just can't make my dominant motivation fear, constant worry that in an instant it might all be gone.  I know it might and I know how radically everything can change, but I can't live clinging to gratitude as a reaction to fear.

What I looked like last month after
 my son's basketball game

Will I be grieving the mutilation of my body all over again?  Probably no more than any other day.  Some days I feel that grief like it's a tidal wave, but most days it's tempered with the acceptance that this is just how it is for me, this trip around the sun.  

And isn't that how we all cope with the big and small losses in our lives?  

This morning I woke up to the aftermath of an ice storm.  Instead of comparing 2012 to 2009, I put on my boots and salted my hilly driveway.  My in laws are visiting, they needed to be somewhere this morning.  I was going to go to yoga at 8 am, but decided I didn't want to go out on the icy roads.  

I'm sitting here, waiting for the waves of joy or grief to overtake me, but I've got nothing.  I'm much more lost in thinking about the quote on the top of this post and wondering if what I have done here over the last couple of years meet that criteria.  I am also juxtaposing that with Audre Lorde's quote that our silence will not save us (paraphrased).  

When I step back, I watch myself move forward, from both the shock of cancer and from my well-worn shoot-first-ask-questions-later way of being in the world.  

That has my mind captivated on this cold, gray, icy day more than any SHOULDS; so I write what is true to try to improve on the silence.  

Poetry Friday

A little Mary Oliver for this cold day.

First, a note about the image.  Local photographer Steve Metz generously agreed to let me use one of his pictures.  He takes amazing photographs of birds and such, posting them at Broadcast Photo.  If you subscribe, he'll send you regular pictures called Your Daily Bird.  He recently launched a new project called Citizen Pork which highlights Cincinnati's creative class; people who make our city much more livable.  I'm sure he'll never feature himself, but we all know he belongs front and center.  Please check out his blogs and show him some love.


Starlings in Winter
by Mary Oliver

Chunky and noisy,

Photo Credit: stephen metz

but with stars in their black feathers,
they spring from the telephone wire
and instantly

they are acrobats
in the freezing wind.
And now, in the theater of air,
they swing over buildings,

dipping and rising;
they float like one stippled star
that opens,
becomes for a moment fragmented,

then closes again;
and you watch
and you try
but you simply can't imagine

how they do it
with no articulated instruction, no pause,
only the silent confirmation
that they are this notable thing,

this wheel of many parts, that can rise and spin
over and over again,
full of gorgeous life.
Ah, world, what lessons you prepare for us,

even in the leafless winter,
even in the ashy city.
I am thinking now
of grief, and of getting past it;

I feel my boots
trying to leave the ground,
I feel my heart
pumping hard, I want

to think again of dangerous and noble things.
I want to be light and frolicsome.
I want to be improbable beautiful and afraid of nothing,
as though I had wings.

Bald Barbie?

Photo Source: LA Times

Recently a grass roots action to get Mattel to make a Bald Barbie has hit the national news.  The idea is to remove the stigma of baldness, to try to build the perception that a person, particularly a woman person, can be beautiful without hair.

I was a Barbie junkie as a kid.  I had as many Barbies and Barbie accouterments as my 1970s working class parents could afford.  As I grew up, I started to understand the downside of Barbie, the unrealistic view of womanhood we hand to our daughters.  In fact, someone calculated that Barbie in real life would be 6 feet tall, weigh about a 100 pounds and have a 39" chest and an 18" waist.

What effect did my Barbie childhood have on my perception of beauty?  There's really no way to answer that question.  My 5'8" brown-haired, brown-eyed, Irish pale, non-Barbie-proportioned self grew up believing that I existed outside the traditional definition of beautiful.  Whether that means I compared myself to Barbie, watched others compare me to Barbie, or whether Barbie is just one symptom of a larger problem, I can't really say.

I do remember getting a little older and chopping Barbie's hair off.  And drawing on her face.  (Perhaps a grown up should have intervened then.)

With a great degree of certainty I can say that having a bald Barbie would not have made me want to be bald.  I'm positive that these dolls would be marketed for girls with cancer and other diseases that leads to baldness.  Moms wouldn't be waiting in lines or fighting in parking lots at Wal Mart to buy their unaffected daughters Bald Barbie for Christmas.

There are dolls for kids with cancers that have ports and PICC lines so doctors and nurses can explain treatments to kids.  I think that's great, and that Bald Barbie has nothing to do with those dolls.

Photo Source: MTV

If Barbie still has her lipstick, her well-lined eyes, hell, even her eyebrows, I see more of a correlation between this Barbie and Sinead O'Connor than I do with a person being treated for cancer.

I assume this Barbie has her legs still permanently molded for high heels.  Peripheral neuropathy be damned!!

Am I willing to go to war with Mattel over this?  Nope.  I suspect this will not be a successful business model.

Do I want anyone, anywhere to think they are supporting me or breast cancer by buying Bald Barbie?  Hellz no.

My deepest fear is that this is another layer of the same problem.  We offer lip-service to the idea of helping people with cancer.  See?  BARBIE is bald!  And since Barbie is fabulous, cancer is fabulous.  Of course, none of this does anything to address the actual disease itself.

And geez, does this mean women will be expected to look like Barbie even when they're barfing from chemo?

So what are the things that matter?

Our lives begin to end the day we become silent about things that matter.

~ Martin Luther King Jr.

Prose Friday

This just feels right today.  I can't explain why I love this so much, it's from Bret Easton Ellis' novel Lunar Park.  But I heard someone read it once, I'm sure on NPR, but I can't find the link.  I loved this passage so much that I sought out and read the novel just to get to this part.  I keep it close to me and I reread it often.  (although my big ego forced me to edit it a bit... sorry BEE)

...everyone was too young to grasp that our life was folding in on itself -- it was so foolish and touching to think at one point that somehow we would all be spared, but the ashes pushed forward and covered an entire city with a departing cloud ...I saw my father walking toward me -- he was a child again and smiling and he was offering me an orange ...the ashes began bleeding into the images and drifted over his mother as she slept and dusted the face of my son who was dreaming about the moon ...The ashes were collapsing into everything and following echoes. They sifted over the graves of his parents and finally entered the cold, lit world of the dead where they wept across the children standing in the cemetery...  losing themselves somewhere beyond my reach, and then vanished, and the sun shifted its position... something new was conceived... From those of us who are left behind: you will be remembered, you were the one I needed, I loved you in my dreams. (p 306)

Deontologicalism or Teleologicalism?

Yep.  I'm busting out the big words today.  I studied ethics as a part of my marketing degree.  Seriously.  In the 1980s.  Amazing, huh?  The funny thing is that I remember more about this class then about most of them.  The other funny thing is that the ethics class was only offered as a pilot in the honors program.  I don't know what happened after I graduated.

First some definitions.  Ethics are a set of moral principals that govern behavior.  Deontology defines ethical behavior as that which follows a moral code without regard for the outcome.  Teleological ethics judge the final outcome, not the methods used to get there.

I'm sure this all sounds obscure, but I've seen two good examples this week of teleological ethics and judging by my reaction to them, I think I know where I stand.

1.  I received an email this week from an organization that is selling t-shirt that says 5318008.  As any 12 year old boy living in 1975 can tell you, if you punch those numbers into a calculator and turn it upside down, it spells BOOBIES.

According to the email, 25% of the $20 t-shirt price goes to fund "translational women's cancer research."  That's a buzzword for a branch of research that seeks to bridge the gap between academic research and having an impact on women's lives.  A worthy cause indeed.

However, I emailed back with my normal arguments about how this contributes to a malaise about the truth of breast cancer, how the emphasis on breasts is harmful to those of us who had them removed, how saving a woman's life should be more important than "boobies."  The woman who wrote me responded with empathy, but this was her final line.

The Noreen Fraser Foundation and Threadless collaborated on this design, which we believe lends an irreverent note to a very serious discussion. The tee itself is intended as an attention-getter; the funds raised by the tee are destined for a worthy nonprofit.

So, I wonder, is this ok?  Does the harm this does outweigh any potential good money raised by the sales of these t-shirts might do?

2.  The Atlanta anti-obesity billboard campaign has made national news.  Here is one of the billboards.

I've been involved in discussions with people on facebook and I see one of two responses.  On one side, there is outrage that children are being shamed this way and that this emboldens bullies and prejudice against obesity.  The other side points out the health crisis of obesity and says that bold action needs to be taken to get people's attention.  Basically, that since I am talking about it here, it's a good campaign because it started a conversation.

I'm sure you can identify my bias here.  Neither of these "ends justify the means" arguments sit well with me. Harming people in pursuit of helping them makes me squirm.  The phrase DOING GOOD BADLY keeps coming to mind.

What do you think?

Reconstruction Q&A with ChemoBabe

Remember last year when I was considering breast reconstruction surgery?   One of my first go-to sherps was ChemoBabe.  She was in the midst of her own reconstruction so I trusted that I would get some honest, in-the-moment answers.  Over the last couple of years I've been lucky to get to know her better and have learned we have quite a bit in common, both personally and treatment-path-wise.  And she happens to be empathetic, a straight-shooter, crazy smart and ridiculously funny, so of course I love her.  

She had some trouble discussing her own surgery, so I asked her a few questions that she answered on her blog this weekend.  I think if you are considering surgery, you should talk to someone you trust about her experience.  Maybe you don't have that available or want even more opinions.  I say this is the go-to post for answers.  She is the real deal.

Here's a tiny excerpt.  Please take a few minutes to read the whole thing and check out her sweater.

How has it impacted you physically, as far as strength, exercise and flexibility go?

I am athletic and sensitive to my body, but I have not noticed any difficulties with the lat flaps. I did a lot of weight training before the surgery. Whether this just helped me psychologically or provided actual support, I do not know. But once I healed from that, I was able to resume my training with my regular weights. This surprised me because I was prepared for an adjustment period. As I said, my range of motion actually improved because of the improvements with the scarring.

Poetry Friday

Standing Deer
~ Jane Hirshfield ~

As the house of a person
in age sometimes grows cluttered
with what is
too loved or too heavy to part with,
the heart may grow cluttered.
And still the house will be emptied,
and still the heart.

As the thoughts of a person

Photo source

in age sometimes grow sparer,
like a great cleanness come into a room,
the soul may grow sparer;
one sparrow song carves it completely.
And still the room is full,
and still the heart.

Empty and filled,
like the curling half-light of morning,
in which everything is still possible and so why not.

Filled and empty,
like the curling half-light of evening,
in which everything now is finished and so why not.

Beloved, what can be, what was,
will be taken from us.
I have disappointed.
I am sorry. I knew no better.

A root seeks water.
Tenderness only breaks open the earth.
This morning, out the window,
the deer stood like a blessing, then vanished.

Happy 2012!

Happy New Year!

Let's just jump right in, shall we?

Yesterday I sent a message to my friend Jody from Women With Cancer.  I told her that I'm feeling like a leech but very unmotivated about blogging, so I requested topic ideas from her.  This led to her telling me that she's noticed a huge change in me over the last year and we began to speculate about the nature of that change.  She suggested that maybe I have come to some sense of normalcy in my life again, after the seismic shift that started in the summer of 2008.  Could it be that I have finally found some sense of peace?

Maybe.

As I told Jody, I don't know why, but I'm just not angry anymore.

Photo Source

The change inside me has been so big that I've even wondered whether it is good or bad.  Am I suffering from depression and don't realize it?  So I looked up the symptoms of depression and ruled it out.  I've never been one to feel very hopeless and today is no exception.  Maybe something that I can't yet name has shifted in me and I started to actually live up to my tag line by making peace with breast cancer.

I look at stupid pink ribbon campaigns or read dumb stuff about the power of positive thinking and while I roll my eyes, sigh and shake my head, I just don't feel the outrage.

Now, let me be clear about a couple of things.  I am not shifting toward "live and let live."  I am unwavering in my conviction that pink ribbon culture is harmful first and foremost because it masks how little progress has been made on curing this disease.  And during 2011, I finally found my voice to speak out about the tyranny of positive thinking.  Once someone tries to turn her personal coping mechanisms, rife with magical thinking, into a set of "shoulds" and tries to turn those into a brand, she becomes dangerous.  Again, we lose the focus on science and insidiously, if someone inconveniently dies of cancer the responsibility shifts to the victim, who must have not thought magically enough.

I am not backing down from those two important issues in the culture of cancer.  But I don't feel like going to war with the Positive Thinking Gestapo or with worthless organizations like Feel Your Boobies anymore. Taking them head-on is a tremendous drain of energy.  Recently someone was advising me on how to handle an unrelated situation and pointed out that if I take on a fight, the fight becomes the central issue.  While I feel it's important to stand up to these people and places, I worry that I run the risk of creating just another distraction from the truth about breast cancer.

Most importantly, I am not backing down from my commitment to my friends who are the losers in the game of genetic roulette and don't have the luxury of deciding how they feel about their disease, because they're too busy living with it.

I need to think all this through some more.  Maybe I'll do some here because I do sort out things with my writing.  But when you live in a nuanced world, nothing happens quickly, with certainty or even permanently.

Poetry Saturday

With much gratitude for all you have brought to my life this year.  And you know you brought it.  

At the End of the Year

~ John O'Donohue ~

The particular mind of the ocean
Filling the coastline's longing
With such brief harvest
Of elegant, vanishing waves
Is like the mind of time
Opening us shapes of days.

As this year draws to its end,
We give thanks for the gifts it brought
And how they became inlaid within
Where neither time nor tide can touch them.

The days when the veil lifted
And the soul could see delight;
When a quiver caressed the heart
In the sheer exuberance of being here.

Surprises that came awake
In forgotten corners of old fields
Where expectation seemed to have quenched.

The slow, brooding times
When all was awkward
And the wave in the mind
Pierced every sore with salt.

The darkened days that stopped
The confidence of the dawn.

Days when beloved faces shone brighter
With light from beyond themselves;
And from the granite of some secret sorrow
A stream of buried tears loosened.

We bless this year for all we learned,
For all we loved and lost
And for the quiet way it brought us
Nearer to our invisible destination.

Holiday sign-off

I'm taking a break for the holidays, but before I sign off I want to share a thought that came to me like all my great thoughts, in the shower.

Earlier today, I read about different cultural and faith traditions that occur this time of year. They all revolve around the return of light to the world, a birth of the Sun (or Son). We are not as connected to the cycles of nature as our ancestors were and it’s tempting to see darkness as something that must be rectified. This year, I invite you to take some time to reflect on what short days and long nights can teach you.

My instinct is to turn away from the intense sadness, irreconcilable grief and the immense pain of what has been lost. I think all of the sentimentality and forced celebration of this time of year brings an even greater sense of disconnection because it stands in opposition to what is going on outside of our brightly lit homes. In my experience, betraying or denying the darkness only intensifies it.

Maybe if we just allow our dark nights to express themselves without fear or disdain, when the light returns, it can return from the inside out.

Another idea occurred to me in the shower. It’s tempting to see the winter solstice as the end of the darkness, but really the darkness is just beginning to end. In fact, we have some ugly months ahead of us – the bleak grey that fades into purple shadows of January and February.

So it is with cancer treatment. You don’t walk out of the treatment center on the last day and straight into June even though people, maybe even you, might hope you will.

I think our lives can become richer and less chaotic when we see the way the cyclical and necessary impermanence as more than just something that happens out there.

I don’t say this in a trite “cancer is a gift” way.  I would never ask anyone to see the tragedies of their life in such a way.  But I believe there is a lot to be learned by these dark days and our slow, messy return to light. In fact, the gift comes from you, not from disease or anything else that happens to us.  You give it to yourself when in the interest of wholeness you compassionately look at your own darkness and bravely welcome the light.

Have a joyous a peaceful holiday season, no matter how you choose to celebrate. (here’s a list of options, by the way).  I’ll see you in 2012.

Source: belief.net

Poetry Friday

Here's some writing I did for my poetry class a few weeks ago in response to the poem excerpted and linked below.  

Ode to… something? 

We must have
the stubbornness to accept our gladness in the ruthless
furnace of this world.

-          Jack Gilbert, “A Brief for the Defense”

I think that’s my favorite line from the poem. 

The assignment is to write about my joy scenarios, about trying to live out my joy scenarios.  I’ll admit it, I didn’t practice it during the two weeks we were off.  In fact, let’s review my week. 

The day after class, I decided to rearrange the furniture, despite the little voice in my head reminding me that every time I try to rearrange the furniture alone, it ends in near-disaster.  I was trying to make a nice writing space and I have lingering childhood fears of lower levels. 

I’ll cut to the chase. 

A heavy mahogany table slipped out of my hands on the basement steps and with a rattling boom broke a hole in the drywall.  After asking me if I took a video of it, or at least a sound recorded of what I said right after it happened, my husband said simply, “Good luck fixing that.”  

So if we had to write about ruefulness, I could do that.

On the upside, I bought myself a lightweight desk from Target.  And I put it together myself, thankyouverymuch. 

So if we had to write about pride in accomplishment, I could do that. 

Then the weekend.  Not bad, spent time with my family of origin celebrating a birthday.  Monday morning, my daughter woke with the stomach flu.  Then I had to worry that she had infected my family, especially my 81 year old mother. 

Yep, I could write about fear.

Tuesday I sent her back to school too soon.  Wednesday, home sick again and at the doctor’s office.  Nothing serious.   I probably didn’t need to take her to the doctor and she probably could have gone to school at least for a half day. 

If we had to write about uncertainty, I could certainly do that.  

Swirling around me are news stories that make me want to vomit.  The way people dismiss the sexual harassment charges against Herman Cain.  The way they immediately choose to discredit the women, devalue their victimization, retreat to viciously divisive claims about liberals, the media and race.  Then the Penn State mess.   I read the grand jury report.  All 23 disgusting pages of it.   I have a nine-year old son and could only imagine the absolute horror, the pieces left for a child and his parents to pick up. 

I could write about anger.  I know anger, what it feels like, what it tastes like, what it makes me want to do.  

I am a self-proclaimed anger expert. 

A friend reminded me we need to be fair, no witch hunt.  She was right. 

I could tell you all about anger that has nowhere to go. 

But joy.  What the hell does it mean?  Happy, I get.  I’m usually happy, I think.  Or content.   I laugh a lot.  But sometimes I’m laughing at myself, or even at the outrageous ridiculousness of our world.  Maybe that’s not happy.  Maybe that’s sardonic.  Maybe sardonic makes me happy.

I remember going to a WW retreat once and having writing prompts about joy.  I had the same problem then, settling on defining joy as a dishwashing liquid.  And that was before cancer. 

Shoot, nothing can suck the joy out of a room, whatever that means, like a cancer diagnosis.

Or can it? 

I keep going back to what Mary said about joy having a tinge of sadness.  What Gilbert does by juxtaposing horror and laughter.  Does one need the other?

At the bus stop on Friday I was dropping hints to the kids about a school-wide party they are having this week to celebrate their Blue Ribbon award.  My son wanted to know if they were giving away Xboxes to all of the kids.  My daughter was disappointed to know that there will be some instruction time.  Geez people, I said, your school doesn’t have to do anything for you.  They could say great job and get back to work.  But nooooo.  They are doing something special to let you know how important you are to the school.  Why not try to have a little gratitude?? 

And there it was.  I coupled gratitude and shame.  Just like my parents did for me and generations of parents have done to generations of kids.

I’ve had this conversation before with other parents, about our own children’s seeming lack of appreciate for “how good they have it.”  I came back to Mary’s statement about joy being tinged with sadness.  Maybe to know gratitude, you have to know something of its opposite – the lack of something, the fear, the scarcity.  Maybe as parents we should congratulate ourselves or thank whomever we thank for our children growing up without knowing basic wants, or the fear that with one wrong step it will all come crashing down.  They will know it eventually.  We can’t shield them forever.  But maybe for now, it’s ok. 

I also resist the duality that seems to underpin this idea.  That for one thing, you need its opposite.  That in order to experience any one feeling, you need to be acquainted with its polar opposite.  I’m tired of polar opposites, choosing this side or that side.  I live in a world of gray.   Most of my day isn’t spent in the throes of intense emotion either.   And the opposite of that is so close that it’s more like hand holding than north and south.   

The Test You’ll Never Take

-Katie Ford Hall  

If north is the opposite of south

and no is the opposite of yes and

if winter is the opposite of summer

and red is the opposite of green,

but knowing that

hate isn’t the opposite

of love

and war isn’t even

the opposite of peace,

forgetting everything you

thought you knew about truth

and lies

but keeping in mind

that while speed and

time aren’t

opposites

they are

inversely proportional, 

complete the following sentence.

blank is the opposite of joy.

Cancer is a _______________.

Jody from Women With Cancer and Alicia from Awesome Cancer Survivor host a chat on Twitter every Monday - Breast Cancer Social Media (#bcsm).   This week, we discussed the idea that cancer is a gift, inspired by Nancy's post at Nancy's Point.  As usual, it was a fun and lively discussion.  People can say a whole lot in 140 characters.

To begin with, let me say that the idea that cancer is a gift is mystifying to me.  Before the stupid little c  entered my life, I interviewed women who said exactly that, and that cancer is the best thing that ever happened to them, and that even if they could change it, they wouldn't.  I remember feeling a bit jealous of them that they had such moving and transcendent experiences.

That was before I was slashed, burned and poisoned.  Now I can honestly say that I wouldn't wish it on anyone, even ruthless dictators and people who irritate me in line at the grocery store.  I don't understand how people can see something as a gift if it kills hundreds of thousands of people every year.  Lots of my friends have Stage 4 cancer, meaning they will be in treatment for the rest of their lives.

Not a gift.


The problem with all this gift talk is that people who've never been in the chemo chair swoon at it, like I did during those interviews.  Then when the uninitiated come across a person who screams that cancer sucks, they can't help but wonder, what's wrong with HER?

Thus, the infuriating idea is born that a person who doesn't believe cancer is a gift is doing cancer wrong.


However, (and you knew it was coming) as much as I don't understand the gift mindset, I am committed to walking my talk here.

What talk is that, you ask?

The talk that says that only when we make space for people to tell their own truths will the world ever change.

Who am I to say that a person can't see cancer as a gift?  And if I look down upon people who say that, which I have been known to do, aren't I guilty of imposing the same sort of tyranny that pushed my buttons in the first place?

Wouldn't I in essence be saying, What's Wrong With HER? 

This middle road is a tricky place indeed.  Lots of pot holes and such.  For me at least, taking a hard-line stance is much easier.

But just like everything else in this messy world, entrenching yourself in your very own sense of righteousness doesn't move us forward into the light.  In fact, I argue, it does the opposite.  

Photog's blog

Photo Source:  Cleveland Plain Dealer

If you haven't seen this already, please check out this website and blog:  My Wife's Fight With Breast Cancer: The Battle We Didn't Choose.  This photographer has been chronicling his young wife's experience with breast cancer, and right now things look pretty grim.  I was drawn to this blog because of this description on facebook:

During our battle, we have been blessed with an incredible support group. Nonetheless, most people are not aware of the challenges that we face every day. We often hear: "Jen looks healthy, glad that things are back to normal." Little do they know that she is in chronic pain from the side effects of 3-plus-years of treatment and medications. Or that we face fear, anxiety and worry daily. Few know that Jen has to give herself shots every day into her abdomen. She has to use a walker and cane and is exhausted from being constantly aware of every bump, bruise or twitch. She has to do special exercises to fight off lymphedema. The frequent doctor visits lead to battles with hospitals and insurance companies. Pain has sent her back to the hospital twice, for week-long stays.

Sadly, most people do not want to hear these realities and we can feel our support fading away. Other cancer survivors share this loss. People assume that treatment makes you better, that things become OK, that life goes back to "normal." However, there is no normal in cancer-land. Cancer survivors have to define a new sense of normal, often daily. And how can others understand what we have to live with everyday?

But I've stuck around both for the pictures and the sheer love that this man has for his wife.  All of it is deeply moving and, of course, painfully tragic.  This couple is originally from the Cleveland area, and he is showing some of his pictures in an exhibit you can read about here.

Poetry Friday

The Winter of Listening
~ David Whyte ~

No one but me by the fire,
my hands burning
red in the palms while
the night wind carries
everything away outside.

All this petty worry
while the great cloak
of the sky grows dark
and intense
round every living thing.

What is precious
inside us does not
care to be known
by the mind
in ways that diminish
its presence.

What we strive for
in perfection
is not what turns us
into the lit angel
we desire,

what disturbs
and then nourishes
has everything
we need.

What we hate
in ourselves
is what we cannot know
in ourselves but
what is true to the pattern
does not need
to be explained.

Inside everyone
is a great shout of joy
waiting to be born.

Even with the summer
so far off
I feel it grown in me
now and ready
to arrive in the world.

All those years
listening to those
who had
nothing to say.

All those years
forgetting
how everything
has its own voice
to make
itself heard.

All those years
forgetting
how easily
you can belong
to everything
simply by listening.

And the slow
difficulty
of remembering
how everything
is born from
an opposite
and miraculous
otherness.
Silence and winter
has led me to that
otherness.

So let this winter
of listening
be enough
for the new life
I must call my own.

AOW Studies

Here's a reminder about the current Army of Women research studies.  Lots of good work being done there - please consider the following.

CURRENT AOW STUDIES LOOKING FOR VOLUNTEERS

DCIS, BRCA1, and BRCA2 Study
The goal of this study is to learn more about the genetic material, called DNA, of women who have had DCIS and have the BRCA1 and BRCA2 mutation. This DNA can be obtained through a saliva sample. Studying DNA might help us to better understand the prognosis and outcome for this group of women and to find out whether there is a relationship between DCIS, BRCA1 and BRCA2.

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Effects of Depo Provera on Breast Tissue Study
The purpose of this study is to gain a better understanding of the effects of Depo Provera, which contains a high dose of a synthetic progestin, on the breast tissue.

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Shift Work and Breast Cancer Risk Study
The research team is studying breast tissue samples from women who have not had breast cancer, who have worked either day shifts (anytime between 8 a.m. and 8 p.m.) or night shifts (anytime between 8 p.m. and 8 a.m.) for at least five consecutive years to better understand whether wake/sleep cycle disruptions may increase breast cancer risk. Later, the researchers will compare the samples collected from women who have not had breast cancer to breast tissue samples collected from women with breast cancer.

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Discovery of Early Markers of Breast Cancer
The research team is analyzing normal breast tissue from benign biopsies for evidence of DNA damage in breast cells and then investigating whether the presence of this DNA damage can predict who will develop breast cancer later in life. This study will happen in two phases. Currently, the researchers are looking for women who had a normal breast biopsy and went on to develop breast cancer. In a few months, they will be enrolling women who had a normal breast biopsy but did NOT go on to develop breast cancer. By recruiting both women who did develop breast cancer and women who did not, the research team will be able to look for markers in the breast cells that might be an indicator of breast cancer risk. This Call to Action is for women who had a benign breast biopsy and then developed breast cancer.

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Phase Ib Trial of 2nd Generation Designer T Cells in Metastatic Breast Cancer
The purpose of this Phase Ib clinical trial is to determine whether a high dose of designer T cells is better when given with or without interleukin 2 (IL2), a drug that is thought to stimulate the immune system. For this reason, some of the study participants will receive modified T cells alone, whereas others will receive modified T cells along with IL2. The researcher would like to enroll about 12 people in this study. Phase I studies typically look at the safety and side effects of a new treatment. This is a Phase Ib study, so it is not only monitoring safety but also looking at whether the experimental treatment being studied is effective. In this case, effectiveness will be measured by how active the T cells become and how much the tumor shrinks.

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The Milk Study
Researchers at the University of Massachusetts at Amherst are studying the breast cells normally found in breast milk to see if there are any epigenetic differences–which have the potential to be reversed–between women whose biopsies turn out to be healthy and those whose biopsies show a problem, such as cancer. Learning more about these epigenetic differences may eventually help researchers develop a way to provide women with information about their breast cancer risk. The researchers have already enrolled more than 250 women, but most of the samples have come from Caucasian women. Since breast cancer risk factors differ among ethnic groups, the researchers are particularly interested in enrolling African-American women, Latinas, Asian women, and other ethnic minorities.

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Genomic Markers of Breast Cancer Prevention Induced by hCG in Women at High Risk
Because pregnancy and breastfeeding appear to reduce breast cancer risk in women, including those with a BRCA1 or 2 mutation, researchers are interested in seeing if giving hormones that mimic pregnancy can change these high risk women’s breast tissue in ways that appear to reduce their risk. The researchers are looking for 18 women for this study.

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The Impact of Colonic Microbiota on Breast Cancer
The purpose of this study is to find out what type of bacteria can be found in the intestines and to look at the way the bacteria metabolize estrogen and other female hormones. The bacteria of women who have never had breast cancer will be compared to the bacteria of women who have been recently diagnosed with breast cancer. Thirty (30) women who have never had breast cancer are needed for this study.

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Yoga for Breast Cancer Survivors: Effects on Fatigue, Immune Function, and Mood
Breast cancer survivors can have a lot of post-treatment problems, such as fatigue, depression, and a decrease in physical function. It is possible that physical activities, like yoga, could help ease these symptoms. This is a study about how yoga affects fatigue, immune function, and mood of women treated for breast cancer.

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Combination of Low-Dose Anti-Estrogens with Omega-3 Fatty Acids for Prevention of Hormone-Independent Breast Cancer
The purpose of this study is to find out if combining raloxifene with a dietary supplement called omega-3 fatty acid has an effect on breast density or urine and blood chemicals associated with breast cancer development.

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Early Detection of Epithelial Ovarian Cancer Using Exhaled Breath Markers
The research team is using specially trained dogs and a chemical test to analyze breath samples for substances called biomarkers that may be useful in diagnosing ovarian cancer. This type of research has been done before with breast and lung cancer.

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Breast Cancer Risk in Young Women Study
The purpose of the study is to learn what genetic factors may play a role in the development of breast cancer in young women. The researchers need to recruit 5,000 women who were diagnosed with invasive breast cancer when they were 40 years old or younger for this study.

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Breast Cancer Microbiota Study
The purpose of this study is to find out what types of bacteria are found in the intestines and how these bacteria metabolize estrogen and other female hormones. The researchers are comparing the bacteria found in women who have never had breast cancer, women who have been diagnosed with breast cancer within the last 5 years, and women who have never had breast cancer but who have a first-degree relative WITH breast cancer.

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Pregnancy and Breast Cancer Risk Study
The research team will analyze breast tissue samples from women without breast cancer. They are studying both women who have given birth (both early and later in life) and those who have not. They are specifically looking at the stroma, the breast tissue that supports the breast ducts, as they want to determine what role it plays in breast cancer. They are also going to study whether the age a woman becomes pregnant, the number of pregnancies she has had, and whether or not she has breast-fed has an affect on the stroma.

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Project CARE
This study is evaluating a stress management, relaxation skills training, and breast cancer education program for Black/African-American women with breast cancer. It is being conducted by researchers at the University of Miami who are interested in evaluating what effect this program has on quality of life.

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Acupuncture for Sleep Problems
The purpose of this study is to learn whether acupuncture can reduce sleep disruption and improve sleep in breast cancer survivors. The study will enroll 64 female breast cancer survivors who have difficulty falling or staying asleep.

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Urine and Tumor Markers Study
The purpose of this study is to evaluate urinary markers and tumor markers in women with breast cancer to find out if these markers can be used to evaluate some potential therapies against breast cancer. It is also possible that these markers could help determine who would benefit from these potential new therapies.

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The Jewels in Our Genes Study
The research team is studying why some African American families have multiple cases of breast cancer. This will help to better understand if there are undiscovered genes unique to African Americans that may predict early breast cancer risk.

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BEAT Cancer Study
This study is evaluating the effectiveness of the BEAT Cancer program for breast cancer survivors. The research team will compare the effects of the intervention to usual care (written materials about exercise for cancer survivors) on short- and longer-term physical activity adherence among breast cancer survivors.

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A Mindfulness Meditation-Based Intervention for Younger Breast Cancer Survivors
The purpose of this study is to evaluate the effectiveness of a specially designed mindfulness meditation-based intervention on psychological, behavioral, and biological functioning in women who were diagnosed with breast cancer before age 50.

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Variations in Health Needs of Breast Cancer Survivors
The information gained from this research about the well being and quality of life of lesbian and bisexual women with breast cancer will be used to develop programs and services that can specifically address these women’s quality of life. Later, the researchers will also enroll heterosexual women who match the age and diagnosis of the lesbian and bisexual women.

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Inflammation Changes Over Time In Obese, Overweight, and Normal Weight Women
The research team is studying nipple aspirate fluid and blood to determine if inflammation biomarkers are: 1. higher in breast fluid than in the circulating blood; 2. higher in obese and overweight women compared with normal weight women; and 3. more variable through the menstrual cycle of premenopausal women compared to postmenopausal women.

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Stepping STONE (Survivors Taking on Nutrition & Exercise)
Researchers at Georgetown University have developed a program that they hope will help Black/African-American breast cancer survivors increase their physical activity and improve their diet. This study is looking at the effectiveness of the program in improving the quality of health behaviors. If the researchers find that the program works well, it has the potential to help Black/African-American breast cancer survivors throughout the U.S.

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ENERGY Study
This study will examine the effects of a program that was created to help overweight breast cancer survivors lose weight by increasing their physical activity level and developing healthier eating habits. A total of 800 women will be participating in this study across the United States at four research sites.

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Interpersonal Therapy for Depression in Breast Cancer Study
The purpose of this study is to see which type of talk therapy is the most effective treatment for depression in women and men who have had a breast cancer diagnosis. It is open to women and men who were diagnosed with stage I-IV breast cancer more than six months ago.

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Interventions for Relief of Menopausal Symptoms: A 3-by-2 Factorial Design Examining Yoga, Exercise, and Omega-3 Supplementation
The research team is studying how well yoga, exercise, and omega-3 fatty acids (fish oil) work to ease hot flashes and night sweats.

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