Saturday, November 27, 2010

The Time For Answers Is Now

I've been watching with interest the cyberspace debate sparked by Peggy Orenstein's article,  "Think About Pink", recently published in the New York Times.  Ms Orenstein's article, a sharp, insightful, and to some, controversial critique of the "pinking" of the world of breast cancer, is, in my opinion, part of a wider and growing backlash to the fundamental "awareness" messages being promoted by the mainstream breast cancer cause movement.  Indeed, in summarizing her views Ms Orenstein states:
"By making consumers feel good without actually doing anything meaningful, it discourages understanding, undermining the search for better detection, safer treatments, causes and cures for a disease that still afflicts 250,000 women annually (and speaking of figures, the number who die has remained unchanged — hovering around 40,000 — for more than a decade)."
To me, Ms Orentein neatly articulates the frustration that many are feeling that,  despite billions of dollars being raised in the name of breast cancer "awareness" from a fundraising movement that started to really gain traction in the early 1990's, treatment regimens although prevalent are of uncertain efficacy and invariably debilitating in their side-effects, agreement on appropriate detection methods for different ages and ethnicities remains fragmented,  and that even today mortality rates from this disease have not significantly decreased, particularly for non-Caucasian women.  (See National Cancer Institute fact sheet).

For me, this particular discussion has seemed painfully real in dealing with my own case over the last few weeks.  I have failed The pharmaceutical companies have failed yet again to produce a drug that will keep my cancer from growing.  So now I am faced with another round of new options, of which quite frankly, none are particularly appealing.  (I know that's a weird statement, but it's all relative in chemotherapy world).  Previously we have had, what appeared to me, to be a fairly well-laid out plan of proscribed chemotherapy options, with measurable milestones, and a reasonable certainty that my quality of life would be tolerable.  It always felt like a workable plan, with plenty of built-in hope and was generally a fairly smooth conversation.

But this time, the discussion with my doctor was different because it seems now we are in murkier waters due to my response, or lack thereof, to the chemo drugs tried so far.  Although I am, thankfully, not without options by any means,  the conversation this time around went something like this. (I'm simplifying for brevity-sake obviously but this will give you the flavor):

DrWonderWoman ("DrWW"): "You have Option A, B, C (which has sub-options) and D.  Options A and B are clinical trials.  Option A is only available in City X (4 hours away)  which I think I can get you into,  and Option B is here although it's randomized and you're allergic to the alternative control chemo which could be a problem.  Options C and D are already available.  Oh and this is what they will all do to you, blah, blah, blah......".

Me:  "And how long will I be on each option?"

DrWW:  "Indefinitely"

Me:  "What do you think is the best course?"

DrWW:  "There is no right answer"

Me:  "How do WE make a decision?"

DrWW:  "There is no right answer? You need to go and research and think about it"

Me:  "How do I do that ?  Last time I checked I didn't have a medical degree"

DrWW:  "There is no right answer"

Me:  "Well is there a particular option that you are leaning towards based on gut feeling and the fact that you have studied oncology medicine ?"

DrWW:  "There is no right answer"

Me:  "So you're telling me that the decision is completely mine ?  Well why do I need you ?"

DrWW:  "There is no right answer"

[This goes on back and forth for about another 20 minutes or so and then I ask.....]

Me:  "Why aren't you giving me any further guidance ?  Is this because you are afraid of a malpractice suit if you tell me the "wrong" thing ?"

DrWW:  "No,  but there is no right answer"

Me:  "Ok, but I would hope that given our history together, going on seven years now, that if I came to you and told you what options I had decided on, that if you felt strongly that I hadn't picked what you would have picked if it were you, that you would tell me.  Is that a fair question?"

DrWW: "Yes, but there is no right answer"

Me:  "Please.......give me something here"

DrWW: "There's no right answer...........but I think you need a taxane in your very near future"

Can Anyone Throw Me A Line ?

Whew!  If I ever felt a situation deserved a cliched metaphor in describing how I felt during this conversation, then this would be it so here goes.  Imagine being cast adrift in a shark-infested ocean, in a leaky boat, with no map or compass, with a cruelly vague sense that land is out there, but absolutely no clue how to move the boat forward or get to the land.  That about sums up how I feel right now.

The fact that I (and so many others) find ourselves in this and even worse situations is what makes me so flipping mad.

All of this money, all of this "awareness" and all of this pink.

And there is "no right answer".

How can this be ?

Thursday, November 25, 2010

Is Cancer The New Normal ?

I'm on a lovely vacation this week and have been catching up on all of my reading, sun worshipping (yes,yes..with SPF70) and partying like it's 1985. Well what's a girl to do when she's on a little break from treatment as she ponders the next step ? Drink a lot of mojitos and spend a lot of time not actually making a decision about what to do next. But that's the subject of another post soon to come. So let's get back to this one.

I was reading an excellent book review entitled "Cancer World" by Steven Shapin in The New Yorker of "The Emperor of All Maladies: A Biography of Cancer" by Siddhartha Mukherjee. A very comprehensive and well-written review and I highly recommend you read it. After you have read this post, obviously. But it was Shapin's last paragraph that really struck me and got my old brain ticking over. He writes:

"...."Cancer, my new normal". A world in which cancer is normalized as a manageable chronic condition would be a wonderful thing, but a risk-factor world in which we all think of ourselves as precancerous would not. It might decrease the incidence of some forms of malignancy while hugely increasing the numbers of healthy people under medical treatment. It would be a strange victory in which the price to be paid for checking the spread of cancer through the body is its uncontrolled spread through the culture."

Well dear readers, I don't know about you, but it already feels like this has happened in the world of breast cancer. So many times I hear breast cancer being talked of as though it's a chronic disease (even though the dirty little secret is that it isn't) and the pervasive culture that exists around breast cancer is one that seems to promote normalization with the unintended consequence of desensitizing the masses to the seriousness of the disease. The hope for a cure or prevention entirely is shrouded by the vagaries of yet more "awareness" campaigns and more incremental drugs whose success is judged on how much time they buy, not eradication.

And certainly in breast cancer parlance I hear a lot of talk about the "new normal" and the importance of finding your "new normal". You can find plenty of information on this topic by simply running an Internet search. Now quite frankly, most of the websites that I found covering this particular topic are of the type that make me feel like I'm sitting in a darkened room on a floor-ful of sequined cushions listening to a New Age therapist with flowing grey hair named Dandelion making ohm-like soothing noises whilst simultaneously cleansing my aura and negative cancerous energy with her toolkit of polished rocks masquerading as healing crystals.

Apparently, according to an example of a Dandelionesque website......

"The search for what is your "new” normal is the culmination of your breast cancer experience. It can define your identity and the path you take on your journey to recovery. It becomes a chance for you to make some choices and take charge of how your life goes while you're in the recovery process."

Pardon me, but this almost sounds like something I'd want to buy tickets to. And invite my friend Deidra who's always looking for new positive life-affirming experiences.

But then Dandelion's tone takes on a slightly more ominous tone. Ah yes, the metastatic breast cancer "survivor". Not much to be said for these poor unfortunates except this:

"However, if you are a survivor living with metastatic breast cancer, “new” normal has a whole other meaning. It’s about adjusting to living with cancer every day, managing your ongoing treatment and maintaining your quality of life. And, unfortunately, a “new” normal in this case isn’t always as positive as it is for a survivor who has completed treatment."

Quite right Dandelion, metastatic breast cancer does suck, (this is exactly what Dandelion said but I said it much more succinctly), but please just remind me again, what is it that we have survived ? And should we really be even trying to apply the term "normal" to the ordeal of living with metastatic cancer, Dandelion ? Because let's face it, there's nothing about it that even resembles a little bit about what I remember as being normal. But hey, if it makes everyone else feel better then go right ahead.

After trying valiantly to convince herself that the experience of living and coping with metastatic breast cancer can be magically transformed into normalcy, Dandelion starts feeling a major downer coming on. And so she reaches for the uppers. In this case her drug of choice is the intertwining of the "new normal" and "survivor identity" concepts.

After snorting her feel-good cocktail of cancer cliche', Dandelion leaves us with this uplifting thought:

"Defining your “new” normal and your survivor identity are synonymous. They both can open up a world of opportunities if you embrace it."

Really Dandelion ? A world of opportunities ? Embrace it ? Let me just think on that a little more as I embark on yet another round of questionable chemotherapy, contemplate being bald and sick for the rest of my life, and am left wondering what happened to my world of opportunities after breast cancer rudely barged into my life.

But seriously Dandelion. Let me just say this. There is nothing new or normal about having cancer. And we better start embracing this notion very soon, or I fear the result as predicted by Shapin's book review. That cancer just becomes an acceptable part of our culture. And that's not my idea of normal.

Monday, November 15, 2010

Boobies Vs Breasts. Coming to A Supreme Court Near You.

Well I predicted it.  This just in from the breast cancer newswires:  School's "Boobie" Bracelet Ban Draws Suit.  Essentially two middle school kids aged 12 and 13 respectively are suing a school district in Easton, Pa., after they were suspended for wearing the popular "I (heart) boobies!" bracelets, claiming that such a ban violates their right to freedom of speech under the First Amendment of the U.S. Constitution.  

I blogged about this particular campaign back in May of this year, in a post entitled "Boobs:  What's Not To Love".   At the time I had this to say:

"With that said, this snippet just in from the breast cancer news wires. Yes folks the breast cancer marketing cause has gone all hip and trendy with the high school kids now wearing all manner of merchandise emblazoned with the slogan "I Love Boobies", as part of a breast cancer awareness effort amongst the youth culture by something called the Keep-A-Breast foundation. As recently reported in the Seattle Times, apparently certain high schools are starting to get a bit concerned about the clothing items and their flagrant use and depiction of the term "boobies" claiming that it's leading to conduct unbecoming of their teenage students. And being part of the great democracy that is the U.S.A, of course the banning of such items being worn at school is not about causing offense or being inappropriate but a limit of freedom of expression under the Constitution, the extent to which will no doubt be tested in the Supreme Court by some spotty 16 year old and their over-indulgent parents.
Ho hum, where does one start with this ?
First of all, I go back to my point from this and other posts that Breast Cancer itself, is a highly marketable cause because of it's sex appeal. It's about boobs. Teenagers are obsessed with fashion and boobs. Edgy clothing with the word boobs to appeal to the younger generation ? Genius. Do you think we would ever see a similar campaign for Colon Cancer ? T-shirts with "I Love Small Intestines" ? Or Bladder Cancer ? Bracelets with "I Love Urine", Anal Cancer ? "I Love Ass" ? Doesn't have quite the same cache' now does it.
Secondly. I love boobs as well. At least I loved the ones that I used to have before they became cancerous and had to be surgically removed and rebuilt from other bits of my body and artfully placed lumps of silicone. Does it help me to see some fashion victim teenager parading around with a t-shirt/bracelet/bag emblazoned with "I Love Boobies" all in the name of "breast cancer awareness" and "freedom of expression" fashion, just to remind me of everything that I once loved and then lost because of an insidious and awful disease that struck me without warning ?" 
 Now call me crazy,  but is anyone who's a party to this lawsuit taking a step back and considering how much this is all going to cost  ?   Time, effort, actual dollars ? Does anyone think this time, effort,  and actual dollars wouldn't  be better spent actually trying to eradicate breast cancer, rather than paying for more plastic bracelets to be manufactured to  pollute the earth a little bit more ? And for what gain ?  So the kids can keep wearing their fashionable little bracelets, someone can keep profiting from their sale, and we can continue to perpetuate the myth that this is all done in the name of breast cancer awareness and   First Amendment  rights to free speech.  

I don't know about you but I can't wait to hear what the arguments are in this particular case.  Who's going to testify ?  Are we going to hear from anyone for whom breast cancer is a terrifying reality,  an experience made even worse by ridiculous and offensive campaigns such as these ?  Are they going to debate the appropriateness of the term "boobies" ?  Will the term's relative merits be compared and ranked alongside "titties", "hooters", "ta-ta's, "funbags", "bazoombas", etc ?  Does anyone even care that the real term is "breast" and that using the term "boobies" to supposedly signify breast cancer awareness, is just another way that this disease is trivialized, sexualized and infantilized by the use of silly memes ?  

And you know that as a result of of this lawsuit there's going to be a big payout.  Money will shift from the school district who, by the way, are in the business of educating the next generation, to where pray tell ?  

So now I think I've seen it all.  Not a lawsuit to charge the corporations still pumping carcinogenic materials into our environment.  Not a lawsuit to hold any of the pinkwashers accountable for their labeling of products with a pink-ribbon, despite selling the very products that contribute to breast cancer risk.  Nope.  The world's greatest democracy is going to debate the merits of the term "boobies".  

And with that dear readers, my hopes for meaningful change in the breast cancer movement just went out the window.

Sunday, November 14, 2010

The Gift of Breast Cancer? I'd Like A Refund.

"I would never wish cancer on anyone. But I wouldn't give back the experience either."
"You are forced to either look upon the experience as a curse, or a lesson in life/challenge to learn from and grow from. Ie., a "blessing"!"

These are real quotes sourced from comments posted to an article written by Eve Ensler (author of The Vagina Monologues) entitled, The Gift Of Cancer.  That's right. The. Gift. Of. Cancer.  Gift. Cancer.  Really ?  These are not words that I would ever wish to see in the same sentence. Ever. And yet, I seem to be surrounded by this kind of sentiment.

Are there people out there who actually see cancer as a gift ?  An experience they would never give back ? A blessing ? Are people now drinking the chemo ?

This week I had plenty of opportunity to ponder my own particular gift and associated blessings. As I was injected with another vile vial of radioactive goop by Nurse I-Couldn't-Hit-A-Vein-If-My-Life-Depended-On-It, so that my entire body could be scanned for more Breastmas-Tree-like lights whilst lying perfectly still in a dirt-nap state in a machine that is strangely reminiscent of lying in a coffin.  (Now, not personally knowing any vampires outside of Sookie and the gang from True Blood, I can't attest to the accuracy of this statement, but I think the only difference might be that the occupant of said machine has a pulse).  Anyway, before I launch into a dull tirade on the indignities of the whole PET/CT scan thing, let me get back to the point of this post.

From a sociocultural perspective, much of what I see and hear in the media regarding the breast cancer "experience" seems to carry with it an aura of calm, peaceful reflection and contemplation.  One could be forgiven for thinking that breast cancer is simply a journey on a well-trodden path that begins with a test of marathon endurance and ends with tangible feelings of achievement, clarity and purpose for the newly minted heroic Survivor.  In an almost graceful state of being, the triumphant Survivor peels back the veneer of her previous  existence to transform into a new and better person filled with wisdom and experiences, feeling eternally grateful and a saintly duty to repay the favors of her life and bestow the gifts of her cancer journey on the world around her.     Epiphanic sentiment abounds.   Transcendent survivorship seems to be the modus operandi in today's breast cancer culture.

And maybe this is exactly  how it is for many who have been through the breast cancer "experience", and I'm not saying that this is wrong.  Everybody has their own reality.  But it is the popular public notion of how a person dealing with breast cancer is imagined to be that I have a problem with. Because when you get to the point where breast cancer is  with you 24/7, with no end-game in sight as far as treatment is concerned,  and the relentless advancing of your disease no matter what you do, the concept of transcendent survivorship is a bitter pill to try and swallow.  In fact, I find it downright alienating.

Gayle Sulik in her recently published tome, Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health, expounds on these popular notions of Survivorship and indeed proposes the"feeling rules of breast cancer survivorship" as an overarching social framework within the context of breast cancer culture.  Ms Sulik writes:
"Feeling Rule 1:  Survivorship requires a strong sense of optimism in terms of hope, faith, and transcendence.
Feeling Rule 2: Survivorship necessitates selfishness, which is constructed in masculine terms as a rational coping strategy or as a confession of gender violations related to women's nurturance and selflessness.
Feeling Rule 3: Guilt results from the stigma associated with failing to present oneself adequately as a she-roic survivor, losing bodily integrity, or disrupting gender roles."
.......The feeling rules of breast cancer survivorship empower and constrain throughout the breast cancer experience, and within women's particular circumstances..........the rules contribute to a "balancing act" as women try to carve out their own mode of survivorship and establish equilibrium between their needs and the needs of others."
Exactly right.  No wonder I feel the way I do.  Honestly,  having cancer has left me with nothing but a gnawing sense of what might have been and what definitely won't be.  It has forced me to confront a whole bunch of crap that, quite frankly, I could have done without.  My life was just fine before cancer rudely barged in and now that I'm just living with it and trying to accept that this is just the way it's going to be,  I certainly don't feel like I'm transcending and morphing into a higher being.  I'm just getting on with it the best way I know how.

The Gift of Breast Cancer.
It doesn't fit. Can I return it ?
For me at least,  terming any part of the cancer experience as a gift or a blessing just seems plain wrong.  Okay I probably do have a greater appreciation for life's simple pleasures and I'm certainly a more compassionate and thinking human being, but I don't see any of this as a gift or a blessing.  A gift is something that makes you feel a bit special and comes without any strings attached.  Cancer takes away so much more than can ever be imagined, and to try and portray this otherwise by putting a positive spin on any part of the experience is what, I believe, is being perpetuated by the pinking of the breast cancer realm.   Isn't what we go through invalidated by using the words like "gift" and "blessing" in the same sentence as cancer? Describing any part of the experience of cancer with terms such as these, boxes up the truth with a pretty pink ribbon to be neatly filed away under "Positive Life-Affirming Experiences" or something similar.  I don't care if the experience of breast cancer causes you to morph into the next Mother Theresa, the fact remains that nothing, nada, zilch can ever be enough to compensate for what is lost to breast cancer. It's an evil curse and I don't intend to ever see it any other way.

Is it shocking to you in reading this that I sound so angry and bitter ?  Yes ?  Why ?  Because this is the myth of populist "survivorship".  It is not everybody's reality.  Doesn't anger just make me human?     So what does all this mean ?  I don't know, but I'm sure as hell not going to give up being angry that this happened to me, and I'm sure as hell not going to give up writing about it.  In fact I would say that feeling angry is a good thing.  At least for me.  It feeds the fire.   My people will just have to deal with it.

After all, I am.

Wednesday, November 3, 2010

Putting the Breast Back in Christmas

Thank goodness Pinktober is over and we can start getting back to some normality around here.  I love November, excuse me Movember, which is the best excuse I can think of for not having to wax my upper lip this month.  Yay men's health and yay support and attention for cancer's other than breast !

It will be interesting to watch how this particular campaign continues to develop.    Not to turn this into a boys (Mo's)-vs-girls (Pink's)-schoolyard scrap, but I'm sure, like anything inherently good, the corporate commercialization vultures will soon be circling around another worthy cause looking for any excuse to appear benevolent and raise profits at the same time.   After all, mustaches are a cute, funny and somewhat sexy way to symbolize men's cancers without all the gory details,  and the global Movember campaign appears to be successful so far in capturing the public's imagination.  Corporate marketers dream written all over it.  Good luck to you guys.  I hope you're able to keep control of the message, evolve it when you need to, maximize the $ raised, and use those $ for game-changing results in the fight against men's cancer.  Oh and do try to keep your domain a Mustache-Washed Free Zone. The capitalists will try anything.  Watch this space.

Moving right along, when I started writing this blog back in 2009, I didn't really know how it would grow, whether it would flourish,  nor exactly what my focus would be.  I just wanted to write.  I also hoped to make some comment on my perception of the culture of breast cancer.  Because it really does exist.  In the beginning, I worried that I would run out of things to write about.  But, fortunately, I live in the Pink Asylum run by the idiot-savant Pinkatics who give me plenty of material to ponder and share with my dear readers.

Now it being November Movember and all, it's about the time of year that I start thinking about Christmas.  Yes, despite no apparent religious affiliations and a positively atheistically-pleasing upbringing, I like to celebrate Christmas.  Not "Holidays". Christmas.  Even though God and I are not really on speaking terms right now, despite my agnostic Catholic husband's protestations that "they might be right" and "you might end up in hell if  you don't get baptized so do it just in case", I still like to celebrate the Son of God's birthday. And I like to go all out.  Big-ass Christmas tree, cheesy nativity scenes, non-matching decorations, 24/7 carols from December 1 on, egg-nog, drunken fruity Christmas cake,   shortbread, gaily-wrapped presents, Christmas cards strung over the fireplace, inside and outside lights as bright as Las Vegas, you name it I'm doing it. I love it !!!

Do you know where I'm going this ?

Well dear readers, I put it to you, that we don't have to limit our celebration of all things breast cancer to just PinkTober.  Let's put the "Breast" back in Christmas, I say.  Because nothing screams festive like breast cancer at Christmastime now does it ?  Behold, my 2010 Christmas Breastmas to-do list.


1. Send Breastmas cards. Message to read:  Dear X,  Just in case you forgot that I have Breast Cancer and you don't , please send me a really big gift. Merry Breastmas !  Love Anna

I found much tackier examples, but couldn't
figure out how to copy them.

2. Write letters to Santa Claus Cause.  Mine will say this.  Dear Santa Cause,  I know I must have been very naughty back in 2004 which is why I got breast cancer, but since then I've been really nice.  I know it might not exist but could you just bring me something that isn't pink and breast-cancer themed.  Love Anna.
Santa Cause.  Bringing
festive cheer and breast cancer
into your home this yuletide season.
3. Purchase Breastmas Tree.  (Click here for a better look at all 6.5 feet of this beauty).
As the Facebook targeted ad said: "Celebrate the season of hope
with pink-ribbon pizazz in this breast cancer support
pre-decorated pull up Christmas tree."

Pink-Ribbon Pizazz ???? Because that's definitely what my house needs
Season of Hope ????? I like Breastmas so much more.

Hang this and no one will ever forget.
And if they do you'll kick their ass.

4. Trim Breastmas Tree with tasteful Breastmas breast cancer ornaments.  
I might do my whole tree in these.
Good, honest, old-fashioned festive cheer.
So poignant.  Have fun explaining the
irony of this one to the kiddies.
Crafters Tip: If you can't afford to buy these delightful ornaments why not go all Martha Stewart and recycle those PET scan films that you've been hiding in your attic.  Just cut out circular discs (try and include the actual tumor pictures for more decorative flair), punch a hole in the top, thread through a skein of pink ribbon, and there you have it.  A real family heirloom to treasure and hang on your tree year after year.

5.  Link arms around beautifully decorated Breastmas Tree and joyfully sing this Breastmas carol.  But not before you've paid me a royalty which I will not be donating to Breast Cancer research:

We wish you a merry Breastmas
We wish you a merry Breastmas
We wish you a merry Breastmas
And a Cancer-Free New Year !

So ?  Did I go too far ?  Well maybe on the Breastmas carol, but I couldn't control myself.  But seriously. Are you hearing me Movember organizers ? People, I can't make this stuff up.  This is where we are and you don't want to be here. It's a scary ridiculous place. Please let this insanity stop.

Merry Breastmas.

EDITOR'S NOTE:  It seems I did miss one important item.  Thank's Gayle Sulik !

Don't forget to thank the pink Son of God for all my Breastmas blessings