Chest Pains

Prologue:  This is a piece I wrote back in May 2011, several days after a second visit to Pink Bank Hospital emergency room in a matter of months.  This was very hard to write, and has taken me quite awhile to decide to publish it.  But there's something I want you to know........... 

Penned: June 1, 2011

I want to write about what happened to me last week. I don’t know if I can do this publicly.

It scared the crap out of me.

My husband was  away on business trip.  I was by myself.  It was Thursday afternoon. May 26, 2011.

Feeling a bit tired, I lay down on my bed and napped for about an hour.  After waking,  I got up and felt a pain in my chest area.  Sort of like I’d been sleeping in a weird position and the muscles had yet to properly straighten out.

But the feeling didn’t go away.  In fact it started to escalate.  My chest tightened, I began to feel slightly nauseous, and it hurt when I breathed in.  My abdomen became swollen and I felt full despite having eaten very little that day.

I started to feel very frightened.  Much of what I was feeling, was similar to how I felt back in March when I had the heart issue.  But this was different,  in that now my breathing seemed to be involved in a way that was painful.

I sat on the couch trying to convince myself it was nothing.  But experience told me otherwise.

I debated who to call first.

Since my husband was away, the closest people were my in-laws.  I knew that they would jump to it, and do whatever I asked.  But all I could think about was how much my call was going to freak them out.

Then I thought about calling my friend who is a nurse.  But she probably wasn't home and I didn’t want to leave her a message.

I realized my doctor’s office was now closed, but I could reach the on-call doctor.  I reached the answering service and when they asked me the problem to relay to the doctor, I heard myself say “chest pains”.  There, I’d actually said it.  Chest pains.  Then I started to cry.  I was alone and I was frightened.

The on-call doctor telephoned me within about five minutes.  Chest pains? Yes. As he was questioning me I broke down and cried like a blubbering mess.  He was calm and very nice, and quietly suggested that I needed to get myself to the emergency room and did I have someone to drive me?  Yes I did.  He said he would call ahead and let them know I was coming. Chest pains.

My mother-in-law arrived and we immediately set off.  She was driving like a maniac and kept asking me how I felt.  Chest pains? How are the chest pains now? I had to tell her to stop talking, slow down and just get me to the ER in one piece.  We drove the rest of the way in silence, whilst I sat there quietly freaking out. Chest pains.

Upon arrival at the ER I said “I have chest pains” and I was immediately asked to fill out paperwork.  Thinking when you are in this state is almost impossible.  Then they told me to take a seat and wait for the triage nurse.  But I’m freaking out, I have chest pains.  Please take a seat.  I sat near the station desk, and heard them talking about me.  I had become Chest Pains.  Not a person who is extremely upset and frightened.  Chest Pains.

After what seemed like an eternity but was probably only five minutes the triage nurse called me in.  Take your purse off my desk she chided me.  Then the questions.  The jaded questions.  Chest pains? Look at the smiley face chart.  Describe your pain on a scale of one to ten.   Describe your pain. DESCRIBE YOUR PAIN PLEASE.  I break down and sob.  I can’t speak.  I don’t know.  All I know is that something is very wrong.

Something inside the nurse softens.  Honey I’m sorry I know this is hard but we’ll figure this out.  I’m just going to write that you’re at a “9”.  Chest Pains is at a Nine.  Now I’m going to try and find you a bed.  Makes a call.  I have Chest Pains here who’s at a Nine, can you please clean out Number 6 for her.  Chest Pains. Nine. Number 6.  Where am I?

Now she feels really sorry for me and walks me back into the ER.  Number 6 isn’t ready, so I am placed on a gurney in the hall.  Chest Pains?  Yes.  Monitors are attached.  Number 6 will be ready soon.  Please go to the bathroom and put this gown on in the meantime.  I leave my underwear on.

I wait.  Two hours later I am shown to my “room” and I become Number Six.

More monitors.  More needles.  More Doctors.  More Examinations.  No Answers.

11.30PM.  Number 6? Chest Pains? Cat Scan? Yes.  Finally some answers.

1AM.  I hear the Doctor discussing my case.  Number 6? Chest Pains. Yes.  Cat Scan.  Less than 10%.  Good.

1.30AM.  Doctor stops in.  You have a small partial collapsed lung. A pneumothorax.  We’re going to keep you on oxygen overnight and watch you.  We hope it will just correct itself.  We don’t know why it’s happened but it doesn’t appear to be lung mets.  This is good news.  It could have been much worse.

Much worse.  Yes.  That’s true.  Just not today.

2AM.  Would you like a sleeping pill? 5mg or 10mg? 5mg please. Number 6. Chest Pains. 5mg.

8AM. Number 6? Chest Pains? Chest X-Ray.

9AM.  Dr Cuteness appears at my bedside and takes my hand.  Rachel I’m sorry you had to go through this. I don’t know why it happened.  You can go home now and I’ll talk to you on Wednesday.

Rachel.

The first time since the ordeal began that anyone called me by my first name in a way that connected me with what I had just gone through.

Rachel. I had chest pains.  I had a partial collapsed lung.  I have cancer. I am scared.

MY NAME IS RACHEL.

Epilogue:  The pneumothorax was small enough that I did not require a surgical intervention and so far appears to have healed on its own.  

Anna Rachnel is a pen name I created for myself when I first started blogging in 2009.  I was reluctant to reveal my real name due to a severe case of cyber-paranoia.  As the blog became more widely read, I started to question whether to keep the pen-name.  

What purpose was the pen-name serving, other than as a kind of security blanket?

Today it's time to shed the security blanket.  I have found my virtual identity.  I have found community.  I have found friendship.  I have found trust.  

Anna Rachnel has served her purpose.

My name is Rachel.  Rachel May.  I am named for my great grandmother.

This is me.  Rachel May.  June, 2011

The Language of Breast (Cancer)

I've been reading a lot of things lately that make me want to run into the street, take all my clothes off, scream like a banshee, and then poke my eyeballs out with hot needles.

Here's a sample from a commenter at Uneasy Pink's blog;

The scream of the Banshee

"I'm sorry you find the words "boobies" and "ta-ta's" offensive but you know what? What you find offensive doesn't matter to me. That's your hang-up to get over... not mine or anybody else's. I have found that women who have had mastectomies are hyper-sensitive about the fact anyway (understandably so, by the way!!).... and have a hard time when anybody makes references to breasts that they themselves don't have anymore. That's understandable & I sympathize... but unfortunately that's another hang-up to get over or be consumed by it."

Hang-ups?

Get over it?

How does one respond to this kind of thinking?  Well,  others have done a much better job than I ever could in explaining how they feel about their breast cancer experience.  Molly Ivins, noted journalist, humorist and author, in a 2002 Time Magazine article famously said;

Having breast cancer is massive amounts of no fun. First they mutilate you; then they poison you; then they burn you. I have been on blind dates better than that.

Molly passed away from Stage IV breast cancer in 2007.  If she could send us a message from the grave I'm sure she would add to the above quote and say something like;

......Then on top of all that NOT having fun, the cancer goes and kills you. 

And perhaps in response to our apparent inability to "get over it" or deal with our breast cancer "hangups", which seems to imply that some of us don't have the kind of attitude that engenders positivity or indeed a sense of lightness and  fun,  Molly might have quipped as she does in the same article;

I suspect that cancer doesn't give a rat's ass whether you have a positive mental attitude. It just sits in there multiplying away, whether you are admirably stoic or weeping and wailing. The only reason to have a positive mental attitude is that it makes life better. It doesn't cure cancer.

If you've been following the current "boobies" debate in the breast cancer blogosphere,  proponents of using sexualized slang in the context of breast cancer will tell you that it's a way of making a serious situation lighter, more palatable and makes people feel more comfortable in talking about breast cancer.    That's nice, but as The Accidental Amazon points out in her latest post;

Hooters.

Knockers.  The Girls.  Cupcakes.  Muffins.  Tits.  Titties.  Melons.  Rack.  Bags.  Milk pails.  Tatas. Boobs.  Boobies.  Jugs.

Do these words tell you anything about the reality of breast cancer?  Me either.

Nor do they tell you anything about women.  What they do tell you about is how our culture labels women.  At best, what they tell me is that humans are fond of jokes, slang and euphemisms, and at worst, that humans are also prone to slurs, innuendo and objectification when they are afraid or hateful or ignorant.

But this idea of using humor to mask the seriousness of some aspect of breast cancer, for whatever reason, is not new.   I learned this as I was reading Siddhartha Mukherjee's tome, The Emperor of All Maladies.

And this one really boggled my mind.

The disfiguring effects of Halstead's
radical mastectomy

In the 1920's a young surgeon named Geoffrey Keynes posited the idea that certain breast cancers could be treated by more conservative surgery and radiation therapy, rather than the wildly popular radical mastectomy pioneered by William Halstead in the late 19th century,  in which at a minimum, the breast, chest muscles, and all of the lymph nodes under the arm are removed.

Halstead's radical mastectomy was a grueling operation lasting six to eight hours and left patients extremely disfigured and debilitated as a result,  It could also involve removal of ribs, cracking and excavation of clavicles all in the mistaken belief that breast cancers emanated and spread from the breast in a centrifugal pattern.

According to Keynes, a more local surgery to the breast could achieve the same outcomes as the radical mastectomy and save many women from the terrible after-effects of Halstead's operation.  In questioning the  surgical status-quo, Keynes also challenged the notion that breast cancer spread in a centrifugal pattern.

So how did Halstead's followers respond? Rather than listening to Keynes theories and using his evidence to extrapolate and expound on his techniques, they instead chose to use language to trivilialize and denigrate Keynes' ideas.  Mukherjee writes;

"They retaliated by giving his operation a nickname: the lumpectomy.  The name was like a low-minded joke, a cartoon surgery in which a white-coated doctor pulls out a body part and calls it a 'lump' ".  Keyne's theory and operation were largely ignored by American surgeons..........his challenge to radical surgery was quietly buried."

After  fierce and sustained resistance from the entrenched Halsteadian beliefs of the medical fraternity, it wasn't until the 1970's - some forty years after Keynes had first hit upon the idea - for the lumpectomy to be regularly considered in the surgical treatment of certain breast cancers.

Illustration of one type of
Lumpectomy 

Why? If we are to believe Mukherjee's historical account, then we can only surmise that the Halsteadian followers' resistance to clinical challenge, and the resulting institutionalized trivialization of Keyne's treatment theory by the use of jokes and euphemism, was the cause for this long delay in finally changing the breast cancer treatment status quo.

Too bad that the butts of this particular joke, uttered in the context of breast cancer, were the hundreds of thousands of women who were subjected to the horrors of the radical mastectomy in the time before lumpectomies, and less invasive forms of mastectomy became standard forms of treatment.

Interesting isn't it?  That one little joke could stagnate real progress in the treatment of breast cancer, for decades.

All because someone dared to question the breast cancer status quo.

Could a society hung-up on using fun "boobie-like" language to describe and sell the breast cancer cause,  end up ultimately forgetting about the seriousness of this disease? Forget the fact that so little progress has been made in stemming the number of deaths from this disease?  Forget about the need to continually question and recalibrate the messages in order to move the fight forward? Will the public simply grow weary of boobie fads and move onto the next fun cause du jour? Then where will we be?

In a 2001 article discussing the work of one of the first breast cancer activists, Rose Kushner, Barron Lerner M.D. writes;

"It will be the challenge of modern breast cancer activists to continually scrutinize their strategies and, when necessary, question dogma, as Kushner did so successfully."

I am one person who is prepared to keep questioning dogma.

I will never "get over it".

And as to my "hang-ups"? Only about breast cancer. For me, a truly frightening reality.

Do you see me laughing now?

Cancer Rebels Rule!

Good afternoon readers!  Well you may have noticed that I've been MIA for the last week or so.  The truth is my new chemotherapy regimen left me feeling like I was run-over by a pink cement truck and then backed over by a pink tractor just for good measure. 

It seems my white blood cell counts dropped precariously low which explains why I felt like pink roadkill this last couple of weeks.  As a result, I didn't get chemo this week which I thought was going to mean good news for my worn-out self, but then DrWW had to go and give me the white blood cell booster shoot.  "Oh don't worry there shouldn't be any side-effects; just a bit of bone ache and maybe some muscle weariness".  Really?  Well turns out I had quite a "rare-what's-new" reaction to the booster, and I spent a couple of days writhing in agony with the worst back pain I have ever encountered in my life.  Finally in the wee hours of Friday morning I remembered the little bottle of street valuable painkillers that I had stashed away in the back of the medicine cabinet walk-in closet, and was finally able to put an end to the misery.

After that very long-winded introduction I'm pleased to say that I'm almost feeling human again.  Another week off from chemo, and then we'll do it all over again.  I really can't wait !

So today I thought I would ease myself back into the blogosphere with a quick little post.

Yesterday Chemobabe and I happened to find ourselves on Twitter at the same time.  And by serendipity we also found ourselves in the same snarky frame of mind.  We started to amuse ourselves by Direct Messaging our favorite cancer rebel fantasies.  Unable to contain the hilarity to just ourselves we decided it would be a grand idea to see if we could get the topic to trend on Twitter.  To the Twitter Luddites amongst you, let's just say that if you can get a topic to trend on Twitter, this means you earn huge street cred with all the other Twitter nerds that you virtually hang out with. 

So we created a Twitter stream called #cancerrebel and asked people to tweet in their cancer rebel fantasies.

Here were some of my favorites (okay some of them were mine):

• Bring a bottle of jack with you to your infusion. tell the nurses it helps you "take the edge off

•  Whenever you use the word 'cancer' swear ... a lot

•  When you go to chemo make the nurse chase you around the room before they can hook you up. Sing na na na na!!!  

• Call up your insurance company and ask to go through every benefits statement line by line, then at end say " oh never mind"

• Next time someone asks if you are "all better now," look them dead in the eye and say, "no. it was cancer, not the flu." 

• Be a page three mastectomy model, no-one would be expecting that when they opened the newspaper

•  When they phone you, put your doctor's office on hold with cloying music and cheesy voiceovers.

•  Next time someone says "you look great" smile sweetly and say "thanks cancer has done wonders for my life"

•  Explain to your friends that your "medical marijuana" is important for your ongoing recovery.

•  Mine is emptying all the pink ribbon donation boxes at grocery checkouts & saying thanks, you shouldn't have.  

•  Telling the nurse to go find her own vein after trying for the third time to find a good one 

• When someone asks if there's anything they can do for you, put them to work cleaning out your gutters. 

Now this is the kind of cathartic cancer therapy I need !

So what's your cancer rebel fantasy?

Engaging With The World

Prior to being diagnosed with breast cancer,  I was your typical mild-mannered public accountant who loved her work and being part of a huge organization.  There was nothing more exciting to me than being asked to research and write on some obscure and complicated tax issue.  There wasn't much creativity involved, or if there was, we called it planning.  Always busy, always buzzing and always people.

After leaving my accounting career behind, to focus on my health and continuing treatments for metastatic breast cancer,  something in me changed.  I stopped being social.  I didn't feel like talking to anyone. I retreated into myself and struggled to connect with the world at large. Having put so much energy into moving on from my initial ordeal in 2004,  only to be hit with a recurrence in 2007 and then again in 2009,  I just don't think I had the emotional energy left to give.  Especially when it came to maintaining existing friendships and making new friends.

With time on my hands I started blogging.  Writing became my therapy and a way to distill the insanity of my situation.  I didn't really care if anyone read it.  If I posted once or twice a month and got the odd comment here or there, I considered my scribblings to be a worthwhile exercise.  But although writing was certainly a help,  I couldn't deny that I felt isolated, frustrated and just plain lonely.

Aside from the physical aspects accompanying a cancer diagnosis, there are so many complicated dynamics and emotions that we struggle with everyday.  I  know these are familiar issues to many people within the cancer community and today I share my reflections on the Journeying Beyond Breast Cancer blog.  Click here to read my guest post entitled "Engaging With The World".

How Being Sarah Came To Be

Through writing this blog, I've had the pleasure of "virtually" meeting so many incredibly talented, intelligent and interesting women.   Many of these women are also bloggers, and we enjoy flitting around cyberspace and visiting each other's sites, catching up on the latest news, engaging in lively debates, talking about life's highs and lows, appreciating and commenting on each other's writings, despite completely different styles and perspectives, and providing a wonderfully powerful network of support, helping each of us make sense of our cancer ordeals.  Many others visit our sites simply to read, reflect, and perhaps to remind themselves that they are not alone with their thoughts and struggles with this disease.

Indeed Chemobabe just published an amazing post on the power of this virtual community in "Over Our Heads" where she says;

"I cannot overstate the value of having a community of people who understand life under the dangling sword. Yet it’s hard to find companions on this journey. Typical support groups are not a match for me because I am unusually young to have this disease. Other women have different reasons for feeling alone."

One of these women whom I've been able to connect with is Sarah Horton, who writes a blog at Being Sarah .  Sarah has impressed me with the way she is able to articulate and channel her anger at having breast cancer, but also with the beautiful way in which she writes about life's simple pleasures, reminding us of the importance of finding a balance in coping with this hand that we have been dealt.

The other thing that struck me about Sarah, is that only three years after being diagnosed with breast cancer she achieved the tremendous feat of publishing her book, "Being Sarah", a narrative about enduring breast cancer, her anger at having developed it in the first place, her views on the politics of the breast cancer culture, balanced with how she has continued to live her life in the face of this adverse circumstance.

Recalling the ordeal of my first round of treatment back in 2004, after my initial diagnosis, all I can remember is how overwhelmed I felt; the constant struggle against the side-effects of chemotherapy, as well as the physical debilitation of all those surgeries and radiation.  But mostly, I just remember the constant mind-numbing fatigue, and the daily struggle of just getting out of bed and putting on my clothes to be ready to face a new day.  I barely knew my own name.

This begs the question as to how on earth does anybody endure breast cancer treatment AND write a book on top of it all? My mind boggles in thinking about this, which is why I was so interested to hear more about how Sarah was able to accomplish this incredible feat.

Please click here to read 'The Story of Being Sarah", published via my sister blog, Can-Do Women.

Preserving our Digital Legacy

In my recent post "Confronting Tragedy in The Age of Social Media",  I discussed the possibility that our blogs, Facebook pages and Twitter feeds, may some day become our opuses, ensuring that our voices will continue to be heard, in perpetuity, by future generations to come.  

I want to revisit that assertion,  and highlight a fundamentally flawed assumption in my thinking that our digital selves will have an infinite life.  In fact, this is only true, so long as our relatives deign to keep access to our online persona available for public consumption, and that whatever corporate entity is hosting our digital selves, remains in business, and has a financial interest in keeping access to our accounts open and free.  

Now that's a lot of what-if's to think about and it causes me to pose an extremely important question:  

What will really happen to our blogs etc., once we are gone ?

Indeed, it's a question that constantly haunts Gudrun Kemper, a regular reader from Germany, whom I've had the pleasure of virtually meeting via this blog.  Gudrun, an extremely accomplished woman and one of the founders of Breast Cancer Action Germany, is also a librarian, a published author of  "Jede Neunte" (Each Ninth), a book detailing and recording the breast cancer experiences of twenty-eight German women at the beginning of this century,  a member of the board in Arbeitskreis Frauengesundheit (Working Group Women Health, the independent women health organization in Germany) and a member of Netzwerk Frauengesundheit Berlin (Berlin Women Health Network).

Gudrun wonders what will happen to all of our blogs when we are gone without a permanent guaranteed home.  In Gudrun's view, the online world is now where history is being written, and this is particularly true in the way that women now go about recording their cancer experiences.  There is a vast volume of material out there in cyber-space being written everyday, that represents an important piece of the collective cancer experience and memory, and we are in real danger of losing all of it, if we don't pay more attention to this digital preservation question now.

By sheer coincidence, as Gudrun and I were discussing this very issue of digital archiving over the email this past week, the New York Times ran a feature article over the weekend called "Things To Do In Cyberspace When You're Dead"by Rob Walker, who raises concerns over what happens to our digital persona and body of work after we have gone.

"By and large, the major companies that enable our Web-articulated selves have vague policies about the fate of our digital after-lives, or no policies at all"

The article notes further that;

"But increasingly we're not leaving a record of life by culling and stowing away physical journals or shoeboxes of letters and photographs for heirs or the future.  Instead we are collectively, busy producing fresh masses of life-affirming digital stuff:...."

Gudrun worries that if we leave the responsibility of archiving our blogs to the mercy of commercial corporate web hosting services, we may find our blogs housed in an on-line repository exploited by advertisers for things like oncology drugs, pink-ribbon paraphernalia or other cancer-related services and merchandise.  An abhorrent nightmare for many cancer bloggers, including this one, who often rail about the evils of the profit-seeking opportunists who feed off the cancer industry.

What we need and what is echoed in the New York Times article by pioneering blogger, Dave Winer, who terms this issue of online content preservation as "future-safing" is;

"an endowment, a foundation with a long-term charter, that can take over the administration of a Web presence as a trust - before the author dies."

In the U.S. this kind of a place might look like The Library of Congress which has been active in creating web archives around specific events (click here to see current web archive projects), although the collection is clearly in its infancy.   Another possible candidate may be an organization like Internet Archive, an American non-profit that was founded with the sole purpose of building an Internet library, and also has begun to post web archive collections.  Or would the National Women's History Museum be interested in preserving our voices ?  Clearly the problems that each of these institutions face in making web content preservation a priority are the huge volumes of global content that currently exist, and the commensurate funding and resources needed to make this kind of preservation work feasible.  But at least it's a start.

Think about it this way.  If every letter and every story that was ever written about breast cancer in the 1700's was preserved and available to be read, would you be interested in such a collection?  Would you think it important to save those women's records from three hundred years ago?  Fast forward to two hundred years from now, and I'll wager that our blogs become as important as those 18th century letters and stories.

So what can we do about this?  Gudrun and I would like to put this question out to you in the online community.  What do you think?  Have you heard of any projects aimed at preserving our cancer blogs? What would such a global online cancer blog repository look like?  What would be some of the important features? Accessible by anyone? Searchable by cancer-type, by country, by symptoms, by issue?  Who should have responsibility for housing this digital warehouse?  Should we trust such an endeavor to commercial concerns, or should it only be housed by a non-profit organization? Where would the funding come from?

Obviously there are many, many questions to think about, in positing such a lofty project, but I would like to thank and congratulate Gudrun for being the "Big-Thinker" with this issue.  It's not something that I'd ever considered, but since talking to her, I realize the importance of this question of preserving our digital legacy, and that there is no time to waste.  We must take responsibility for this now if we are to ensure that our voices will continue to be heard.

Please do take a couple of minutes to share your thoughts on this important issue.  What do you think?

The Can-Do Spirit

"You can do this.  You'll get through this".  These words, gently spoken to me by my oncologist, Dr WW, when I was first diagnosed in 2004 and facing the prospect of life-altering surgeries and a debilitating chemotherapy and treatment regimen.   And DrWW has continued to utter these words as a way of coaxing me through, each time we have another crisis, and each time we stare down yet another frightening round of scans and changes in chemotherapy treatment.

What's interesting to me,  is that for some reason, this simple mantra of "I can do this", has stayed with me and has really sustained me even through the most difficult of times.  I continue to be truly amazed by what the human body and psyche is able to endure in the face of medical catastrophe.  And whilst many people are quick to label this kind of coping mechanism as brave, or having a fighting spirit or simply strength of character,  to me it's just getting through a horrendous experience the best way I know how.  There's nothing brave about it.  It just is what it is.  And wouldn't everybody do the same if they were in my shoes?  You just do it, and you get through it.  Somehow.

In dealing with my own cancer nightmare, I have become a voracious reader of all things breast cancer.  I've been particularly interested in the history of breast cancer, and recently read an absorbing book by James S.Olson, entitled Bathsheba's Breast: Women Cancer and History. After finishing this book, I was struck by two things.  Firstly, by how long the world has known about breast cancer, apparently since ancient Egyptian times, and yet how little we still know about breast cancer, even today.  And secondly, I was completely moved by the horrifying ordeals that women have endured, and continue to endure, in dealing with the disease itself and the treatments inflicted on them by the medical establishment of the particular time. Indeed, their stories are traumatic and unbearably gruesome to the reader, but in the end they remind us of the lengths women have always been prepared to go to in the hope for a cure from this terrible disease.

Anne of Austria (b.1601- d.1666)

Mastectomy in 1655

Consider Anne of Austria, the wife of Louis XIII, who died of breast cancer in 1666 in France, at the age of sixty-five years old.  She had first noticed a lump in her breast in 1663, but chose to ignore it, probably to avoid the ghastly and daunting breast cancer treatment options of that time which included surgical excisions, bleedings and purging of the supposed cancer-causing black bile which was part of the popular Humoral medical theory of the day.  In 1664, after the pain of the tumor became intolerable and she became sicker, Anne consulted her physicians.  The doctors realized that surgery was not possible as the tumor had spread to under her arm, and so they began a series of treatments designed to keep her alive.  Bleedings, daily enemas, purges, herbal poultices and even daily surgical removal of necrotic tissue became Anne's reality.  But it was all to no avail and after her punishing ordeal, Anne passed away in 1666.

18th century mastectomy instruments
of Gerard Tabor

By the 18th-century, Humoral medical theories of breast cancer were largely abandoned, with the mastectomy becoming the preferred method of treatment by physicians of the time.  In 1811, the Victorian novelist Fanny Burney, described in a letter, her experience of a mastectomy without anesthetic or proper sterilization procedures.  It's a harrowing account, and is recounted in full in the attached link, however this excerpt is wholly descriptive of the agony endured by Madam Burney.

Fanny Burney
 (b. 1752 - d. 1840)

My dearest Esther, - & all my dears to whom she communicates this doleful ditty, will rejoice to hear that this resolution once taken, was firmly adhered to, in defiance of a terror that surpasses all description, & the most torturing pain. Yet - when the dreadful steel was plunged into the breast - cutting through veins - arteries - flesh - nerves - I needed no injunctions not to restrain my cries. I began a scream that lasted unintermittingly during the whole time of the incision - & I almost marvel that it rings not in my Ears still! so excruciating was the agony. When the wound was made, & the instrument was withdrawn, the pain seemed undiminished, for the air that suddenly rushed into those delicate parts felt like a mass of minute but sharp & forked poniards, that were tearing the edges of the wound - but when again I felt the instrument - describing a curve - cutting against the grain, if I may so say, while the flesh resisted in a manner so forcible as to oppose & tire the hand of the operator, who was forced to change from the right to the left - then, indeed, I thought I must have expired.

Abigail "Nabby" Smith, the daughter of U.S. president John Adams and his wife Abigail, found a lump in her breast in 1809.   The family physician, William Rush, who after consulting with Nabby, wrote ominously to her family:

Nabby Smith (b.1765-d.1813)

"....This remedy is the knife.  From her account of the moving state of tumor, it is now in a proper situation for the operation.  Should she wait till it suppurates or even inflames much, it may be too late....I repeat again, let there be no delay in flying to the knife."

Ultimately a surgeon, by the name of John Warren of Boston, operated on Nabby in the upstairs bedroom of the Adams' house. His kit of surgical tools included a large fork with two six-inch prongs sharpened to a needle point, a wooden-handled razor, a pile of compress bandages, with a small oven of red-hot coals which heated a flat, thick heavy iron spatula.

18th Century Mastectomy Instruments
similar to those described in Nabby's operation

Nabby entered the bedroom dressed in her Sunday best, and was directed to sit down and lean back in a reclining chair, upon where her waist, legs, feet and right arm were belted, and her left arm was raised above her head.  Whilst another physician held her raised arm, and another stood behind restraining her shoulders and neck:

".....Warren then straddled Nabby's knees, leaned over her semireclined body and went to work....."  

A full account of the operation, again performed without anesthesia or sterile conditions,  Nabby's recovery,  and then her eventual demise from the disease in 1813 at the age of forty-eight, is available in essay form, from James S. Olson's book in the attached link.

Asa and Lucy Thurston

Similarly, Lucy Goodale Thurston (b.1795 - d. 1876), a missionary living in Hawaii, also wrote an incredible letter describing her mastectomy performed without anesthesia in 1855. Consider this excerpt:

"Then came a gash long and deep, first on the side of my breast, then on the other.  Deep sickness seized me, and deprived me of my breakfast.  This was followed by extreme faintness.  My sufferings were no longer local.  There was a general feeling of agony throughout the whole operation."  

 Reading these women's stories, reminds us of the resilience of women even in the most dire of circumstances and there's something in this that I connect with in trying to come to terms with my own breast cancer treatment.  No matter how bad things seem for me at times, it's almost unimaginable to think of the sheer terror and horror that each of the women featured in this post must have gone through.  And yet somehow they found the fortitude to stare down the beast and suffer and endure the most indescribable indignities in seeking a cure for their disease.  What I find even more interesting about Fanny and Lucy's cases, is that they wrote about their experiences in a time when breast cancer was considered shameful, something to be hidden and most certainly not discussed outside of the immediate family.

But in some ways, this is where my experience and the experiences of these women converge.  Indeed Gayle Sulik, in her blog post entitled "the terrible stories" and discussing the works of African-American poet, Lucille Clifton who also had breast cancer, articulates very well the importance of writing in dealing with this kind of trauma;

"The “terrible stories” of which Clifton speaks reveal the power of story-telling especially when confronting challenging life experiences. The narratives, necessary and terrifying, are a way of communicating, finding connection, and giving voice to private, deeply felt experiences."

Unable to speak freely about their experiences, perhaps Fanny and Lucy found solace in their letter-writing, and were able to find a way to connect with what had happened to them.  In all likelihood, writing was their only means of support in trying to heal from the great traumas their minds and bodies had gone through.  In many respects, this is no different to the reasons that we blog about our own cancer experiences today.

In reading and digesting these women's stories,  what shone through for me, was the spirit possessed by these women in facing their terrifying surgeries and treatments.  It's a spirit that I think many women possess.  It's not necessarily bravery, or courage or saint-like strength.  But more of a spirit of "can-do".  I think it's the same spirit that gets me through.  And perhaps this is what my oncologist is trying to tap into when she tells me that "I can do this and that I will get through it".  It's this can-do spirit, shared by so many women and reflected in so many stories, past and present, of famous women and ordinary women alike, that I find so inspiring and motivating.

In the cancer culture, we continue to embody the spirit of can-do women everyday, probably without even realizing it.  Sarah Horton of Being Sarah, a published author and dedicated breast cancer activist in the U.K; Gudrun Kemper of Breast Cancer Action Germany, an independent voice for German women affected by breast cancer in a cancer culture dominated by pharmaceutical corporations; Gayle Sulik, author of Pink Ribbon Blues, asking the tough questions of the U.S. breast cancer movement; Jody Shoger of Women With Cancer, a tireless cancer advocate who's harnessed the power of Twitter (@jodyms) to keep us informed of the cancer-world news; Chemobabe, Katie at Uneasy Pink, Kathi of The Accidental Amazon, Stacey of Brining Up Goliath, Nancy of Nancy's Point, Brenda of Breast Cancer Sisterhood, Marie of Journeying Beyond Breast Cancer, Sarah at The Carcinista; are but a few more of the wonderful community of can-do women bloggers doing their bit to keep the fires burning and the spotlight on the realities of lives interrupted and challenged by a cancer diagnosis. We continue to share, we continue to write and we continue to just keep doing what we do.  Why?  Because we can do it !

And so readers it is with this "can-do" spirit in mind, that today I am fulfilling a promise to myself (mentioned in my post, "Moving Forward") by launching a new blog called:

Can-Do Women
An Homage to the Everyday Lives of Women, Past and Present

I will continue to write The Cancer Culture Chronicles with the same energy and attitude as before, but the Can-Do Women blog will fulfill an avid interest that I have in women's social history, and a desire to expand my writing interests beyond the cancer realm. I hope that it will become an interactive magazine-style blog, in which we can all share something about the Can-Do Women that we encounter from the past, present and in our everyday lives.  Please do let me know what you think, and your suggestions for features will be most welcome.  Features may take any form; stories, photographs, poetry, articles, interviews, pictures, advertisements, recipes, videos, snippets of everyday life, the form is really unlimited.  You can email me at candowomen@gmail.com or connect via the Can-Do Women Facebook page.

Please join the conversation.  You are most welcome.  

The Well Trodden Path

Today I had the great privilege of being the featured guest post on the wonderful Journeying Beyond Breast Cancer blog.  A couple of weeks ago, Marie, who is the author of JBBC, had requested guest blog submissions from women dealing with metastatic breast cancer.  I decided to give this writing assignment a go, despite some misgivings as to whether I would be able to manage it.

As a follower of my blog, you may have noticed that I tend not to talk about my own experience in too much gory detail.  I generally prefer to write about my observations of the popular breast cancer culture and how my experience fits around that.  But I decided that it was important to step outside of my comfort zone and write an honest account of what goes through my head on a daily basis in dealing with this disease.  It was a difficult exercise because it forced me to confront and articulate my many fears in a way that I am not used to doing.  After deliberating with the post for many days, I decided to take a deep breath and just go ahead and submit it.  Shortly after,  JBBC informed me that my post had been selected for publication.

And so I took another deep breath and laid myself bare for all the world to see.

Please click here to read my post entitled "The Well Trodden Path"

(http://beyondbreastcancer.wordpress.com/2010/12/16/the-well-trodden-path/)

Confronting Tragedy In The Age of Social Media

I know the following post is a drastic change in style from my last blog post, but that's how I roll.  I never really know what I'm going to feel like writing until the moment strikes and the events of this past week have certainly contributed to the grist for this post.

This past week saw the sudden passing of a dear old friend from an inoperable brain tumor.  I hadn't seen him for quite some time, but we had kept up with each other's movements through mutual friends and had traded emails from time to time, filling each other in on the details of our lives.  Apparently he had become ill whilst at work, and two weeks later he was gone.  It was very quick and, by all accounts, took most people by utter surprise.  But that's cancer isn't it?  It sneaks up on you when you least expect it and with no apparent logic as to who it is going to take next and when. The world is certainly an emptier place with the loss of this gorgeous amazing man, and his passing seemed to be a culminating moment in  a week where it seemed everything was about death, no matter where I turned.

I first became aware that my friend was ill via another friend on Facebook, and then on Friday I received an email from yet another friend who said she had some bad news.  When I googled my old friend's name, I was confronted with his obituary notice on a funereal portal site of sorts, where one could log in with their Facebook profile, find all of the funeral details, leave a message for the family, light a virtual candle and shop for flowers to send to the family.  One could also build a family tree and  a perpetual tribute website for the departed all for the bargain price of some low monthly fee.  It seems that most funeral homes are now associated with a funeral portal of some type, and this isn't the first time I have seen these online tributes being offered to mourners. At first I felt a little uncomfortable with the concept, but ultimately,  I think my friend would appreciate the messages that were left for him, and when they are ready, I'm sure his family will find some solace in being able to read all of the tributes left for this wonderful gentleman.

But it did all get me thinking.  How important has social media become in dealing with death in our society?

Earlier, this last week, I accidentally stumbled upon a breast cancer blog, where, literally, a woman's dying moments were being broadcast and recorded for posterity.  From what I could gather, the lady was in the hospital and was dictating to her sister who would record it on her blog or she would send a text message, which her sister would then transcribe to the site.  It was a very strange moment for me and I felt almost ashamed that here I was, seemingly lurking on the site, intruding on this, the most sacred of life's moments.  (To avoid any issues of rubbernecking you'll understand that I don't feel comfortable identifying the site, and I don't think it would serve any purpose to do so at this point anyway.  The woman in question had passed away by the end of the week).

Today it seems that living and dying, with cancer in particular, has become a public affair.  We blog about it, we tweet about it, and we post updates on Facebook for all to see. In the world of cancer blogging, "tombstone blogs" abound; those that abruptly end with  a post from a relative informing the world of the author's passing, or just nothing at all and only our assumptions as to the fate of our virtual compadre'.  There are even Facebook pages for those that have passed on.  A dear friend of mine who died two years ago from pancreatic cancer, still has an active Facebook page administered by her sisters, where her friends still go to post messages.  A sort of virtual graveyard where one can go to peacefully converse with the departed, in a way that almost feels tangible.

Indeed, this week participants in the social media collectively grieved with the news of  the passing of Elizabeth Edwards, attorney, author, health care activist and ex-wife of wannabe presidential candidate, John Edwards.    Mrs. Edwards was diagnosed with advanced-stage breast cancer in 2004, which then metastasized in 2007 and had been living with the disease ever since.  After it was announced to the world by her family, that she had stopped receiving treatment for her cancer, this message, ostensibly her last words to the world, appeared on her Facebook status:

"You all know that I have been sustained throughout my life by three saving graces – my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And, yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human.

But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel to everyone who has and continues to support and inspire me every day. To you I simply say: you know."

The next day, the world was informed that Mrs Edwards had died.  The outpouring of emotion on Twitter, Facebook, the blogs, and the many online articles that appeared after her death was overwhelming.  Although virtually none could have claimed to have had a personal relationship with Mrs. Edwards, it seemed like her death was a polarizing moment of sorts, especially in the online breast cancer community.   Many waxed lyrical over a life lived with "grace and dignity" and of a "peaceful death at home surrounded by family and friends".  Now we can't really know the truth about the circumstances of her death, whether she was in pain, whether she had accepted her fate, or even whether she was aware until the very end, but as a virtual group of "sisters"all dealing with breast cancer, we took comfort in knowing that she seemed to finally be at peace after a "brave and courageous" fight against metastatic breast cancer.

To me, although obviously a sad moment, her death was more of a stark and tragic reminder that breast cancer is not the "chronic disease" that many in the cancer industry and medical fraternity would have us believe.  Mrs. Edwards' death simply bought into focus, for me, the lottery-like nature of this disease.  After she was diagnosed in 2004, the same year as me, her cancer returned in 2007, like me.  Whilst I'm certain that we both had access to all that the medical profession has to offer in terms of treatment,  I've just simply been "luckier" with my disease than Mrs. Edwards,  in that I'm still here. Although treatments proliferate, even for Stage IV, their efficacy is uncertain, and what can work for one patient won't for another, for no clearly identifiable reason other than what I can only term as "dumb luck".  At that's what makes me mad when I think about her death.  That yet again, another woman has to die from this stupid disease because we can't figure out how to stop it.  We can spend all the money in the world on breast cancer education and awareness campaigns, but this didn't help Mrs. Edwards one iota, and nor does it help the hundreds of thousands of people currently living with metastatic breast (and other) cancer.  We just have to do better on this score.

And in some ways that's why I'm thankful for the advances in computing technology that have given us the tools of social media.  Because the existence of social media is keeping cancer in the public eye in a way that is confronting and personal, and in a way that reminds us all, that cancer can strike anyone and at any time.  Cancer doesn't discriminate. Mrs. Edward's' death and the collective online coverage and dissemination of grief clearly displayed a personal reaction that went far beyond that which a simple newsprint obituary would have evoked.  Indeed, I felt incredibly sad that yet another woman had died from this disease, but I was almost guiltily glad that her fame and celebrity, and associated online persona was bringing much-needed attention to the fact that metastatic breast cancer is for many, a fait accompli, to which death is the final outcome, despite the proliferation of treatments and the very best in medical care.  And it is from this perspective, that I hope for myself and the many other women dealing with this insidious disease,  that the public won't soon forget exactly what it means to be diagnosed with breast cancer.  Mrs Edward's death should serve as a call to action to do better in the fight to combat and eradicate this disease and we must keep talking about it and using social media to keep the message never far from the public consciousness.

For those of us living with cancer and other serious illness, social media has allowed us to connect as a giant virtual support group where we find like-minded individuals and where we are able to shout our frustrations to the universe without judgement.  We can find information at a moments notice and count on the fact that someone will always be there who's going through exactly the same thing.  Even though we generally never meet these virtual compadres or form a relationship beyond our online forums, discussion threads, blog comments, twitter feeds or Facebook pages,  there's something incredibly powerful in being part of a group mindset, in dealing with emotions and challenges of catastrophic illness.  Although many of us come with completely different viewpoints, different strategies for coping, and some come simply to read and ponder, whilst others are motivated to activism of some sort, there is comfort in knowing that you are not alone.  In fact Chemobabe in her latest post entitled "Good Company" articulates why we have this innate need to seek each other out  when she said:

"We survivors need each other. We live in an emotional reality that might be conceptualized but not fully understood by others who are outside of our experience, no matter how much they love us. It is often a lonely place."

Ultimately, living and dying in the age of social media may seem incomprehensible, and even abhorrent to some. But it does serve a purpose, especially for those dealing with serious illness.  Feelings of isolation and inherent loneliness are common problems - often it's easier to write about what's going on than it is to talk with close relatives or friends, and there is certainly therapeutic value to be gained from being able to honestly articulate what you are feeling by shouting anonymously to the universe.  You are being heard and you are not insignificant.

And this is why I think the dying lady felt the need to blog her final moments to the world.  Because she wanted to remind the world that she still mattered.  And that she still had something to say.  And this is also why Elizabeth Edwards chose to publish her final words via her Facebook status.  Because she too, still wanted to be heard.  And that's all any of us want.  Just to be heard.

It's kind of interesting to think that our blogs, Twitter feeds, and Facebook pages stored as binary code and bits and bytes on a server somewhere, may one day become our opus.  In perpetuity, we can continue to be heard.

So my friends, I say to you.  Keep writing.

People just want to be heard

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 epink.blog spot.com 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.

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.