Sunday, October 31, 2010

Pink October May Be Over, But I'm Just Getting Started...

As this month of October draws to a close and I emerge out from under my rock into the rapidly receding pink haze, I thought I would put fingers to keyboard and let you know what caught my attention over this last crazy month.

First of all, those ridiculous Facebook meme's, all in the name of Breast Cancer Awareness.  "I Like It on The Floor....", "What color is your bra", and this particular Facebook status update:
"Every person has 1000 wishes. A cancer patient only has one: to get better. I know that 97%    will not post this as their status, but i Know that most of my friends will be one of the 3% to put this as their status, at least for an hour, in honor of those who died because of cancer or are .........still fighting it."
I really enjoyed reading this one every morning when I logged in, which reminded me that; a) I have cancer;  b) apparently I have no other wish than to get better, which is strange because I also want a vintage red Karmann Ghia, a tiny house, and another dog so this statistic just can't be right ! ; and c) 97% of my so-called friends won't even honor me by putting this on their status for at least an hour.  Wow tough crowd.  If it wasn't bad enough having cancer in the first place. [Now before I lose too many readers here I apologize if you did in fact post one of these things on your status and my protest offends you, but honestly they're just dumb so please stop].

Moving right along, there were many wonderfully smart and sassy posts as to what all this Breast Cancer Awareness really means.

I met Breast Cancer Barbie via ChemoBabe ,  and read things like:
"So what should awareness mean? Nobody will convince me of a connection between buying pink ribbon potato chips and knowing the symptoms of breast cancer or your personal risk"

And then this amazingly insightful post by Tamera Shanker on Think Before you Pink Blog, excerpt reproduced here:
"It wasn’t until I was blind-sided with a diagnosis of breast cancer this summer that I became aware of the breadth of my ignorance. There was, and still is, so much that I did not know about the disease and its treatment. And, none of the information I received over the last 15 years of my “pink” involvement ever even hinted at the depths of my naivete."
Gayle Sulik, noted medical sociologist,  published her book, Pink Ribbon Blues, a study of how the culture of pink ribbons is ultimately affecting women's health and a sharp and insightful critique of the current pink awareness campaigns.  On the other side of this important debate, we also heard from Nancy G. Brinker, sister of the now-famous Susan G. Komen and head of the charitable behemoth Susan G. Komen For the Cure, and her story Promise Me reviewed here, with Ms Sulik's book, in the New York Times.  I've read Ms Sulik's book which I highly recommend, but not Ms Brinker's.  I guess it would be fair to read Ms Brinker's book before I launch into any tirades about my perceptions of the Komenesque breast cancer awareness message, so I'll leave that for another day.

2005: Me And my best friend, before
we became completely jaded.
There was also much lively debate on the labelling that goes on within the breast cancer realm. Of particular interest to me were the uses of the terms "Previvors" and "Survivors".  The breast cancer community themselves seem to be quite divided on whether these terms should be embraced or not and whether they are helpful to the "cause", but I found the following articles to be interesting additions to the debate nonetheless and have included my two cents worth for good measure.  [Full Disclosure:  I used to be a "Survivor" poster child and even have a picture to prove it.  Let's just say compared to where I was then (joyous to have completed initial treatment in 2004) to now (still in treatment 6.5 years later ), I'm over it !] 

Elaine Schattner on "Who's a Survivor?" and my posted comment:
"This is a really great article. I must admit I'm a bit sick of all the "cancer catchphrases" that are floating around, "survivor" being one of them. I think it's part of the culture of hero-worship that we, as a society are so quick to embrace. Personally, I don't feel like I'm heroic in any sense of the word, and there are days where I feel like I'm barely "surviving". Mostly I'm just dealing with the very big pile of BS that life served me up, and doing it the best way I know how. If people find that inspiring, great, but I'm not doing it for anybody else. The danger of putting "survivorship" on the pedestal where it is currently, is that if I'm not putting on my "survivor" ra-ra strong happy face, then apparently I have given up hope. Well I haven't given up hope, but I refuse to say I've survived breast cancer, until I've actually survived breast cancer. I like to keep things real in this case."

And Dina Roth Port on "Previvors: The Fight of Those At High Risk For Cancer" and my posted comment:
I agree with you that the "Us vs them" thing has to stop if we are to present a united front in the fight to end this disease. However I do take issue with our seemingly constant need to try and label individual experiences within the breast cancer realm. As a person living with Stage IV metastatic breast cancer at the ripe old age of 40, I personally find these labels to be somewhat divisive and to try and simplify the experience with a catchy label just doesn't speak to everyone's story. The ugly truth about breast cancer is there is no one size fits all approach. The terms "previvor" and "survivor" are undoubtedly meaningful to those who have actually gotten through it and they do tend to be used to outwardly display one's achievement against the cancerous beast (and rightly so, if you are fortunate enough to have beaten the beast into submission). But from my perspective, the terms are another reminder of an achievement that moves a little bit further to the outer limits of possibility as each day goes by without anything that will make a difference to my outcome. For what it's worth, I did find out that I was BRCA1+ after I was initially diagnosed, despite no family history, and I wish I would have known before and had the chance to have done something about it.
In her blog post entitled "Remembrance", Gayle Sulik discusses the current visibility of breast cancer in today's culture, and how it has changed with the advent of the pink-ribbon movement.

This IS Breast Cancer
This is NOT Breast Cancer
Along similar lines, the Jezebel blog ran this story, SCAR Project Exposes the Realities of Breast Cancer.   Most of the commentary I saw was supportive of the models and their decision to be photographed, although I did see some dissension and hand-wringing as to whether the the photos were just another form of exploitation of these young women's breast cancer experience. Personally I applaud their decision to be involved in the project.  More power to them.  Too much of what we see in today's breast cancer culture is pink, pretty and all ra-ra-ra and the actual experience is lost on many behind all the pinked-out imagery, hoopla and pageantry.  Photographer David Jay's photos included in  The Scar Project are harrowing indeed and clearly show the raw, painful, and horrific reality for many members of the breast cancer community.    They are images that are not soon forgotten to be sure.  

Against the backdrop of pink ribbons, and the cacophony of breast-cancer-awareness-saves-lives type messages, the social networks and blogs were alive with commentators fighting against the tide to move the message from simply being one of awareness, to a movement of prevention with a focus on the environmental causes of cancer.  The Breast Cancer Fund, and The National Breast Cancer Coalition's 2020 deadline are larger scale examples of how the focus for research and advocacy is slowly shifting with the recognition that if prevention is the focus, the need for a cure becomes obsolete (except I would still like a cure, given I already have it).  There are also plenty of grassroots efforts like the Cinco Vidas blog, not to mention the continuing good works of Breast Cancer Action in this arena.

Alongside the environmental debate comes the term "pinkwashing", a term used to describe the activities of companies and groups that position themselves as leaders in the struggle to eradicate breast cancer while engaging in practices that may be contributing to rising rates of the disease. Cosmetic companies, vehicle manufacturers and fast food purveyors are some of the more notable examples of this phenomenon in the last year.  Once again Breast Cancer Action, with their "Think Before You Pink" campaign has been a leading voice in the struggle to expose the more egregious examples of pinkwashing, like Kentucky Fried Chicken's partnership with Susan G. Komen For the Cure earlier this year.  Komen themselves have increasingly come under fire by many within the breast cancer community with their apparent limitless efforts to raise money for their "breast cancer awareness" messages by pairing with many big business names, for whom breast cancer has become the cause célèbre and, in turn, a canny way to increased profits.  See the attached article in the Huffington Post on the Komen furor, and this comment by Ann who writes the excellent "Breast Cancer...But Doctor I Hate Pink" blog.
"I'm a breast cancer patient who has been in treatment for a year. My BC humor blog, http://but doctorihat has gained enough readers so advertisers contact me. This month has been a real eye-opener. I've been approached by dozens of companies, all wanting me to promote their products, with minuscule proceeds going to Komen. My disease is not a marketing opportunity, and it's appalling that Koman has turned breast cancer into some sort of pink marketing party. They accept money from companies whose products actually cause cancer. I was neutral before but I'm now against cause marketing as promoted by Koman, as are many other BC patients. If we are to have a month dedicated to a disease, we should have a month dedicated to ALL cancers. And, charities like Komen should forgo "awareness" (who isn't aware of breast cancer by now?) and give everything to research. As far as I can tell, Stand up to Cancer is a much better organization and I suggest everybody forget the pink and give to them directly and not through useless purchases."

Rather than flying pink ribbons and hanging out in Survivor Tents at fundraising walks, this year I decided to spend October earnestly writing my blog, educating myself about the history of breast cancer and the associated "cause" movements, and inserting myself into the dialogue throughout all of the social networks like Blogger, Twitter, Facebook, as well as many online current affairs publications.  What I discovered was a tight community of like-minded, welcoming, sassy, humorous, intelligent, activist women who continue to open my eyes to the pulse of today's movement but also the possibility and hope of where all this dialogue may lead.  And that is, an end to breast cancer.

In writing this post, I'm sure there were other things that caught my attention which I've neglected to include, but in describing what I felt in exploring the breast cancer cyberworld over this last month, the words of Nancy Koehn in writing The Mental Game of Breast Cancer  really resonate;
"...women must continue to pass on their strength, insights, and experience about the mental game of breast cancer to other women through largely informal networks--conversations, blogs, and email. And this "underground railroad" of support will keep on rollin' on the fuel of collective caring and respect for the entire experience of having breast cancer."
Amen to that.

Monday, October 25, 2010

What Color Are You ?

To be "aware" means you have knowledge of something.  In today's  culture, the term "awareness" is generally tied to having knowledge or being cognisant of something that you probably don't want to think about in your everyday life.  Luckily we now have "Awareness Ribbons" to remind us all of those things that we don't want to think about.  And to make things even simpler, a system of color coding has evolved so that different colors represent different horrible things that we don't want to think about.   Seeing a ribbon today is supposed to immediately trigger a kind of Pavlovian response that in turn should immediately make us feel guilty (even if we're not sure why),  with the ultimate reaction being that we dig into our pockets to help that horrible thing we didn't want to think about,  all in the name of the holy colored ribbon.

Is it really that simple ?

Did you know this Cloud Ribbon symbolizes Congenital Diaphragmatic Hernia ? That sounds particularly horrible, although I'm still not sure what it is.

The Periwinkle Ribbon symbolizes Esophageal and Stomach Cancer Awareness.  The symptoms of these awful diseases dovetail very nicely with the fact that the the Periwinkle Ribbon also symbolizes Eating Disorder Awareness.  Although maybe this is a little confusing and I hope that I never accidentally tell a Stomach Cancer patient to just shut-up and eat their dinner already.

The pretty little Pink and Blue Ribbon apparently stands for Pro-Life Awareness, Infertility Awareness,  something called Genital Integrity Awareness and apparently Inflammatory Breast Cancer Awareness, amongst other things.   Again this multiple use of the ribbon creates some strange parallels.   In some cases, one of the prescribed treatments for breast cancer is removal of one's ovaries which will make you infertile and by default unable to create new life. Hopefully your genitals remain intact though, unless of course you opted for nipple reconstruction in which case you may want to consider touting the ribbon for Genital Integrity as well.

Now the Black Ribbon is displayed for Melanoma awareness.  Fair enough.  It's also tied to mourning and remembrance of the Virgina Tech massacre.  And the Anarchist Black Ribbon Campaign.  Once again I hope never to find myself yelling belligerently at a Melanoma patient to "Get a job !".

Aside from the obvious Environmental Protection cause, the Green Ribbon also means that you are "aware" of  a) the 2009 Iranian Election Protests b) Lyme Disease c) Bipolar disorder d) Aging e) Pedestrian Safety f) Gastroschisis g) Organ transplants and donation h) Mitochondrial Disease and i) Kidney Cancer.  Confused yet ?  And where do you stand on all of these issues ?  Just wear your green ribbon and it's all good.

Now the Teal/Turquoise ribbon seems to be the most popular color of all, standing for some twenty-four different awareness campaigns.  Take your pick.  From Ovarian Cancer, to Batten Disease, to Myasthenia Gravis, to Panic Disorder, to Native American Reparations, to Dissociative Identity Disorder, to Food Allergies and Anti-Bullying, to name but a few.  Teal has it all and something for everybody.  Join the club !

I think the Gray Ribbon might be my favorite.  Aside from the usual suspects like Mental Illness, Diabetes, Asthma and Brain Cancer, most importantly the Gray Ribbon stands for Zombie Awareness.  That's right !  This is good.  Because if you happen to die from any of the above mentioned conditions that you are now completely aware of,  rest assured, you can still wear a ribbon and rally your support team with pride, even if you are undead.  

At this point, if you haven't heard enough about Ribbon Awareness and want to know more you can click here to get a full list of Ribbon color meanings.  I make no claims as to the accuracy of the list but it's an interesting and entertaining read nonetheless.

As for the color pink and the associated Pink Ribbon which has been claimed by breast cancer since the early 1990's and is not shared with any other horrible diseases, causes or events, I have this to say.  Breast cancer is so much more than stupid dumbed-down pink ribbon awareness.   Yes, at one point we did need awareness to get the conversation started and it worked just like the Red Ribbon did for the AIDS awareness movement.   But we need to move the campaign on now.   Ribbons as symbols of causes have had their day.  As you can see by the listing above, the cause-related marketing space has become cluttered, and with all the noise that surrounds every campaign touted by a colored Ribbon,  we get a little more tired of it all.  And when we get tired we become a little more complacent.   Be "aware" by all means, but make sure you look a little deeper and don't sit back and think that a colored Ribbon is the ultimate answer.  It's not.

Further Reading:

Friday, October 22, 2010

Virtual Breast Cancer

Last time I checked it was still October,  we are still awash in the Sea of Pink,  we are no closer to eradicating breast cancer, and there is a breast cancer Pink Ribbon Barbie ! Thanks Chemobabe for drawing attention to this particular abomination.  Honestly folks, if you can think of it in the Pink Ribbon world, it exists.

Today I thought I would take you for a magical mystery ride into a real-life Bizarro World.  So strap yourself in, sit back and enjoy the ride !

Have you heard of Second Life ?  It's basically social networking in 3-D with a fantasy gaming edge to it.  So you can create a 3-D avatar for yourself, choose your name, look, clothes etc and inhabit a virtual world of your choosing.  You can do all the things that you would do in normal life, like shopping, meeting people, decorate a house, run a business, have a relationship and.....wait for it......have breast cancer !!!!  

Breast Cancer Network of Strength office

You can even send your avatar to a virtual support group where you'll be met by a virtual breast cancer counsellor, and you can invite all your little virtual friends to a virtual breast cancer awareness fundraising event at something called Club Coalesce, where all the virtual money raised goes to helping run the virtual breast cancer support group that you attend in fighting your virtual breast cancer.

Breast cancer fundraiser attended
by very buxom women
Now I don't know about you, but this struck me as completely and utterly bizarre.  If you wanted to inhabit a Utopian world, full of handsome manly men and perfectly proportioned and unrealistically sized women, why on earth would you want cancer to be part of that perfectly proportioned fantastic unreal virtual reality ? 

Well folks it's very simple.  The creators of Second Life aren't in it for free.  It's a business.  And within the Second Life world, you can run a virtual business and earn Linden dollars (yes  it's a virtual currency), and then use your $L profits to purchase more virtual stuff for your perfect little virtual world.  So wouldn't you know it ?  The Breast Cancer Awareness pink ribbon profit-making business has made it to the Second Life Marketplace.  

Breast Cancer Awareness Party Box
because breast cancer is a party !
Because nothing screams sexy like
a breast cancer diagnosis !

Just when you thought it couldn't get any more ridiculous right ?

Breast Cancer Tribute Garden

Now just in case anyone's starting to feel a little teary at the thought of all those poor little virtual buxom breast cancer victims, and the virtual Breast Cancer Awareness Party Box just isn't cheering you up, there is a place you can go to find virtual solace in your now slightly imperfect virtual world.   Yes !  A virtual Breast Cancer Tribute Garden "located within the beautiful Gardens of Absentia, this special area sets out to raise awareness about breast cancer. It is dedicated to remembering both loved ones and survivors of this global disease".

But have no fear.  If you're now so virtually depressed that you feel like you want to jump off the closest virtual cliff and end your miserable virtual life, I say "don't do it!".  You can fix it and make it all go away.  All for the bargain price of $1L.  A magical breast cancer wand !  Just what I've always wanted.  If only it were that simple.

If only it were that simple.

Wednesday, October 20, 2010

Before Breast Cancer Blogging

Often, when pondering a new blog post, I ask myself why it is that I feel the need to write this blog.  It's a good question and one that deserves a little attention.  

When I was first diagnosed with breast cancer in April 2004, I don't think I'd  ever even heard the term "blog".  Or if I had, I'm quite sure I assumed it was another one of those nerdie-techie-type-things that would be of absolutely no interest to me.   But upon receiving my diagnosis,  I did feel the need very early on to communicate my experience in  a way that wasn't overwhelming emotionally, and highlighted all of what I thought was relevant information in a way that would predicate people's questions and avoid all of those wrought, awkward and repetitive one-on-one conversations.  

So I decided to start mass emailing.  I broke the news via an email, and then over the course of that year, sent out regular updates to friends, family and work colleagues describing my treatment and other details of my life as they came to pass. Today I found copies of all of those emails and thought I would publish them here for posterity.  (See "Winding Back the Clock to 2004").

It was strange reading them back over,  but it was interesting to reacquaint myself with that girl so vibrant and full of hope in the face of complete devastation and adversity.  After I read them through I concluded that girl hadn't quite connected emotionally with all that she was faced with, but then when you are in the moment you don't really have time to think too deeply, and adrenalin kicks in kindly allowing your mind to just get through it.  I think writing in quite a mechanical way was more about keeping my thoughts straight, staying relevant to my circle, but most importantly not wanting to cause other people to worry and trying to make them more comfortable with my situation.

My writing has certainly moved on from those dark days in 2004 when it seemed important to share my entire medical file and details of my treatment with everybody. Today I blog  as a way to vent frustrations and fears, to distill the manic thoughts in my brain, put some perspective to my unreal reality and share ironic moments in my life.   I no longer feel the need  to talk in too much gory detail, unless there's a laugh or two to be had, and maybe by writing this blog I'm still trying to comfort other people.

But you know what ?  It doesn't really matter why I write.  And it doesn't really matter whether it's any good or not.  Or whether anybody reads it.  What's important is that I DO write.  It means I still have a brain and a voice, despite it all.

Friday, October 15, 2010

A Funny Thing Happened on The Way To The Forum.......

A funny thing happened on the way to the chemo forum yesterday.  I was at my doctors office, waiting in the chemo check-in line,  which is slightly less tedious than the airport check-in line but with over sized emotional baggage and without the promise of an exciting destination at the end of it.  Suddenly this elderly woman sidles up to me and whispers in my ear,  "You look like a model", and then turns around and prances off down the hallway.

I barely had time to smile to myself and think, wow, I guess I must look good today.  Now rather than just take the compliment for what it was and enjoy it I just had to start over thinking it.  

First of all I could never be a model.  1. I eat food and especially enjoy carbohydrates.  2. I am wavering on double digit size clothes and by this I don't mean size 00. 3. I'm about twenty five years too late chronologically, a double chin and two ridiculous fake boobs to boot. 4. I don't get out of bed for less than the promise of three square meals and snacks in between.  And 5.  Do I really want to add an eating disorder and body dysmorphia to the already quite long list of medical issues ?  Nope, I don't think so.

Then I sat down in the waiting room and looked around me.  Most of the people that I see in my oncologists office  are quite elderly, quite frail-looking, bald and obviously very sick.  And then here's me waltzing in with a full head of hair (thank you chemo-gods), forty years old, and I guess compared to what they're going through looking pretty darn good.  In fact, I think I could probably pass for someones caregiver truth be told.

It's funny though, years ago I had an interesting conversation with a friend of mine who happens to be African-American.  I can't remember exactly what we were talking about, but he described what it was like walking into a roomful of people and being the only dark face in the room.  Even though he knew that no one was against him in any way, he just always felt people did a double take when they saw him, which always made him feel a bit weird.   I actually argued this with him and said it couldn't be and that maybe it was he who just felt self-conscious.  

Now six or so years ago in my first round of treatment I lost all of my hair.  I wasn't one for wearing wigs preferring the headscarf route which I always thought looked pretty good.  But what you see in the mirror isn't necessarily what other people see and I suppose you just get used to the way you look and don't really think about it in the security of your home.  One day I boarded a crowded subway train, took my seat, and suddenly got an overwhelming sense that everyone was staring at me.  I looked up and actually caught a couple of people staring directly at me with a look I can only describe as questioning pity.  I must have looked bad that day I guess and I suppose my cancer patient chic' head wear wasn't fooling anybody on that train.   I suddenly understood the feeling that my friend had described all those years ago.  It was weird and quite unsettling I can tell you.

So I suppose to some extent that's what going on now whenever I go to my doctors office.  Except now it's in reverse.  I walk into that room and still look like the odd person out, but this time it's because I  look pretty normal and I guess pretty healthy.  But then they see the yellow patient wrist band and the hideous IV port coming out of my chest, and they know that I am one of them, but one who is fortunate enough to pass incognito most days.

It's the small mercies and little moments like this where I remind myself, that no matter how bad I feel physically or emotionally, there's always someone else who feels a hell of lot worse, and would give their eye teeth to be in my shoes.

Tuesday, October 12, 2010

Stop The Train !

You may have noticed an uptick in my blogging activity in this month of pink October.  It's not because I want to make you more aware of breast cancer than you already are.  And it's not because I think I'm  a gifted and talented writer, who is a fountain of knowledge of all things breast cancer, and brimming with intelligent witticisms that I just can't wait to share with you.  Nope.   It's because I can't get away from stinking breast cancer, especially during October, and it makes me so crazy that the only recourse I feel I have is to inflict my blogging on you, my poor abused reader.

I went to Lowe's this morning and nearly tripped over the very large display of Susan B. Komen ghastly pink house flags.   And the "Holiday Pink Lighted Doe" that you can put on your front lawn and thus display your allegiances and unquestionable benevolence to the cause, and make your neighbors feel guilty that they aren't doing as much as you.  I go to the supermarket and I get accosted at the checkout to donate, then at the door on my way out, then find I've accidentally purchased the very pink products that I rail about.  Every time I log onto Facebook someone has changed their picture to a pink ribbon, or pinked their photograph, or is sending me a request to advertise my bra color all in the name of Breast Cancer Awareness.  

A Breast Cancer Frog ?  WTF ?
I'm even getting bombarded with targeted Facebook advertisements for every tacky pink product ever produced,  all because I decided to "Like" Breast Cancer Action's Facebook page.   Seems horribly ironic, given what Breast Cancer Action stands for.  Here's a  sampling of the kinds of product  I'm talking about.  I mean come on ?  Who is buying this shit ? Have people been so brainwashed, that they honestly believe that buying any of this crap it makes the world of breast cancer a better place ?  

What about a Breast Cancer Barbie ?

Honestly folks, Pinktober has become such a nightmarish festival of all things wrong with our consumerist culture, and just a very sad reminder to me at how vacuous, stupid and ridiculous the pink ribbon cause has become.  This whole month, and every time I see another puerile pink-ribbon product promotion,  only serves to make me feel even more stressed, angry, isolated and alienated.  

Sparkly Breast Cancer Shoes.
Just tap the heels together
and chant "I want to be cured, I want to be cured"
and it will be.

So to all the geniuses who keep coming up with these things.  Good job !  Thanks for making me feel even shittier about having breast cancer than I already do.  And to all the people in world afflicted with some other nasty incurable disease ?  I'm sorry and I'm embarrassed that you have to put up with this crap, because as bad as it makes me feel, I can't even imagine how you feel.

Is she crazy ?

In case you were starting to wonder if I had gone over the edge with my rantings on the evils of the pink-ribbon movement, see this recent piece written by Barron H. Lerner M.D., for the New York Times.  You see ? I'm not crazy.  Plenty of food for thought and inspiration for change.

New York Times Well Blog entry:  Pink Ribbon Fatigue, New York Times, October 11, 2010.

Thursday, October 7, 2010

Groundhog Day

I went to get my weekly chemotherapy treatment today and spent the time engaged in a delightful conversation with the elderly gentlemen sitting next to me who was there receiving the fourth day of  his 5-day/40 hour chemo regimen.  Pause for a second.  Yes. There's always someone worse off.

Now usually when I go to chemo, I pretty much keep to myself and like to use the time catching up on the latest important news, like the length of Kate Gosselin's new hair extensions, which Real Housewife has a come out as lesbian this week and whether there are any new Khardashian's populating the Earth that I don't already know about.  By the way, I believe it was one of the Atlanta bunch, but that was last weeks news and this week she's back to manhunting.

Anyway, I don't know what it was about this old fella' that endeared me to him.  I know it wasn't his camouflaged "I Love the NRA" hunting cap, nor is choice of footwear (think Crocs and socks - not a good look on any day), nor his hokey little sayings like "I'm off like a prom dress", but there was something about him, that just screamed here's a man with a yarn or two to tell.  Plus he had a kind face.

So I reluctantly put the People magazine aside, Kate's hair news would just have to wait and we started to engage in a lively banter.  I think my "in" was the size of his cantaloupes.  Yes he grew them in his vegetable garden and they were humongous according to his enthusiastic recount of his garden's growing season.

Like I said our conversation was a breath of fresh air in an otherwise uneventful and extraordinarily dull day. We talked about groundhogs.  And how best to shoot them from your kitchen window without being detected by PETA, the anti-gun lobby, and any neighbors mildly concerned about shotguns being pointed in their general direction.  Apparently it can be done and he managed to shoot four this season in this very manner.

Now don't get me wrong.  I don't like guns even a little bit nor do I advocate shooting them Yosemite-Sam-style at furry little creatures in an otherwise bucolic suburban setting.  But I don't like groundhogs either and I do like vegetable gardening.    So thanks old man.  It was nice to know that we had something to talk about and something in common other than stinking cancer.

Tuesday, October 5, 2010

The Big C

I've been watching that Showtime TV series, entitled "The Big C", starring Laura Linney as Cathy, a 40-something-year- old woman diagnosed with Stage 4 Melanoma.   The series is positioned as a black comedy and despite my initial skepticism I have to say that I'm a fan.  Okay, I know there's some controversy out there in that Laura Linney is apparently a smoker, so why would she have the kahunas to portray a woman dealing with terminal cancer when cigarette smoking is a leading cause of lung cancer, but before we get too excited from a cancer-police perspective,  let's just stick to the discussion at hand and talk about the merits of this unusual show.

First of all, from my perspective it's kind of nice (and extremely unusual) to see the experience of living with cancer being portrayed in mainstream media in a way that doesn't involve a lot of people crying, morose violin music and a tragic funeral at the end of it.   Don't get me wrong, there is a poignancy to the show and an overarching theme of the useless tragedy of it all, and obviously there's nothing funny or entertaining about having cancer from a big picture point of view, but living with cancer day-to-day, as I do, certainly does provide some moments worthy of a well-scripted television series that includes some inside jokes and laughs that many of us immersed in the cancer culture can instantly relate to.  

Now I could poke some holes in some of the show's premises, like whether it's realistic to think that someone would receive a terminal cancer diagnosis and not actually tell her immediate family.  Maybe back in the bad old days, when nefarious diseases or other matters of health were certainly not polite dinner conversation I could believe it, but today I'm not so sure.  And would an oncologist really be that familiar with his patient that he would take her to look at a house he wanted to buy ?  And does getting a cancer diagnosis really make you want to rush out and get a Brazilian wax job ?    The show has also conveniently chosen to completely avoid the decidedly unglamorous details of chemotherapy, surgery, radiation and the like, by having Cathy choose not to have treatment and let the disease run it's natural course.  Which begs the question as to how the show will run its natural course, given Cathy has a date with death in the not too distant future.  But probably better not to over-think this issue right now and just enjoy the show.

But anyway, one of my favorite episodes is when Cathy takes up her oncologist's suggestion that she attend a local support group.  She walks into a room filled with a circle of seated people, and immediately introduces herself by way of a monologue of her life's accomplishments, how much she loves her life, her political views and blah blah blah.  This takes some time and at the end of it she is met by a roomful of blank stares, and then the group leader turns around and says "But do you have cancer?".  With that, Cathy turns terrified tail and rushes out the door never to return to the dreaded support group. For the remaining time of the episode she must deal with the stalker-like efforts of some of the group members who try to engage her in conversation about her cancer and dump uninvited casseroles on her doorstep.  I thought this episode was a classic and could only have been appreciated and concocted by someone who has been in Cathy's shoes.   In the world of cancer, you either like support groups or you don't and I thought this episode really hit the point about the struggle that we face every day in determining not to let cancer consume our individual identities.

So we'll see how the rest of the series plays out, and I'll check back in with some updated thoughts on the story-lines, but for now I've pushed my skepticism aside and am watching with an endeared albeit slightly critical eye.

But What to Do ?

It occurred to me whilst out walking my best little furry friend in the world, that it's all very well for me to spend my time ranting and raving about the pink ribbon movement,  but in doing so I fear I may be in danger of delivering a mixed message.

So let me just clarify and put my money (and possibly yours) where my mouth is.

I support anything that can truly make a difference in ending breast cancer.  I want my money going into research that will result in never having to talk about breast cancer ever again.  I don't want my money going into research unless it is addressing the fundamental question as to why breast cancer continues to be a mortal threat.  If we understand why, then we can address the root causes and there won't be any need for a holy grail cure.   I want my money going directly to a source that might ultimately save my life.  I don't want  my money going to yet another  "early-detection-saves-lives" education and awareness campaign.  Thanks pink-ribbon marketers for all that you have done on this score but I am aware as I think are most other people by now.  Call me selfish, but these kinds of campaigns don't help me nor the millions of other people out there who already have this dreadful disease, nor do they get us any further in understanding why people continue to be diagnosed.

So where will my philanthropy be going this year ?

1.  Breast Cancer Action whose mission statement states:

"Breast Cancer Action carries the voices of people affected by breast cancer to inspire and compel the changes necessary to end the breast cancer epidemic."

2. National Breast Cancer Coalition whose statement states:

"NBCC's mission is to eradicate breast cancer, the most common form of cancer among women in the United States, by focusing the administration, U.S. Congress, research institutions and consumer advocates on breast cancer. NBCC encourages all those concerned about this disease to become advocates for action and change. The Coalition informs, trains and directs patients and others in effective advocacy efforts. Nationwide, women and men are increasing the awareness of breast cancer public policy by participating in legislative, scientific and regulatory decisions, promoting positive media coverage and actively working to raise public awareness."


Obviously feel free to donate to any other organization of your choosing, but please, before you donate, read what Breast Cancer Action and Gayle Sulik have to say in evaluating where your hard-earned money should go.  Check out Gayle's blog entry, "Before You Buy Pink".

Friday, October 1, 2010

Breast Cancer Blogosphere: Let the Comments Begin...

  1. I've just been onto Breast Cancer Action's new Think Before You Pink blog, and wanted to share a comment that I posted on that site earlier today.  It pretty much sums up where my thinking is today on the Pink Ribbon cause.  For more on this debate, check out the original BCA post, "An Alternative to Pink October"

    Anna Rachnel says.......

    "First of all, thanks to BCA for giving us this forum and potentially very powerful tool in bringing some accountability and common-sense debate to the Pink Ribbon circus.

    Firstly to take issue with some of the comments. I am not bitter about the color pink, but I am bitter about having Stage 4 breast cancer at the age of 40. And I am bitter, that despite all the pink hoopla and pageantry, and billions of dollars of well-intentioned fundraising, that we are no closer to understanding why this disease is affecting so many and at younger and younger ages. I am bitter that all anybody, who doesn’t have breast cancer, seems to have been fed is the party-line that “Awareness Saves Lives”, all wrapped up in pretty pink ribbons.

    The message that has become clouded, and I fear all but forgotten, through pink-ribbon cause-related marketing and resulting consumer fatigue, is this. Breast Cancer is NOT a treatable chronic disease, but still a killer and one in which mortality rates have not significantly diminished since the early 70’s. To me “Awareness” simply means that breast cancer is being detected earlier, and rightly or wrongly being treated longer, with the outcome still not largely different.

    Do I sound pessimistic ? Sure, but can you blame me ? Am I thankful to be alive ? Yes. Do I need to walk around festooned in pink-ribbons being eternally grateful to the mighty benevolent corporations for raising money for a cause that I believe has gotten off track ? No I do not.

    Let’s take the fundraising back to grassroot causes (like BCA!) , demand some accountability and get to a situation where the average person can make an informed decision as to where their money is actually going and what it is being spent on, rather than hiding behind the vagaries of the “Pink Ribbon” culture and thinking that it is enough."

October Dreams

Good morning readers.  Well it's that time of year again.  Pumpkin pie, leaves falling, Halloween, dusted off crockpots, apple picking, crisp clear days AND ridiculous pink-ribbon pageantry everywhere I look for the whole month of October.  There's no escaping it to be sure,  but if you are interested in hearing another viewpoint and some common sense discussion amidst all the hoopla, do me a favor and check out Breast Cancer Action's latest blog project tied to their excellent "Think Before You Pink" campaign.

The bottom line is this.  I want to know who is really profiting, where is all the money really going, and when are we going to get  off the "Awareness Saves Lives" pink ribbon festooned carousel and get on the "Why the Hell Do We Have It In The First Place" trajectory ?

Then we might get somewhere and I might have nothing left to say.