Up Yours Stupid Statistics !

I'm taking a few days off from the Cancer Culture. There's so much noise in the media right now, what with all the squabbling going on about mammography and whether it's worthwhile in women under-50, how much it costs over a woman's lifetime, whether saving 1 life in 1900 is really worth it, how mammography might actually cause breast cancer in high-risk younger women, blah, blah, blah.

It's all a bit overwhelming for this particular woman who is under 40 years old, has a serious case of breast cancer, and falls outside every breast cancer statistic the research geniuses have ever put out there. So I'm escaping for a couple of days to just go and enjoy myself, turn down the volume and remember why my life is worth saving no matter the cost or what the stupid statistics say.

The Screening Debate

There's been a lot of coverage in the news this past week about recently issued guidelines, by various organizational bodies, pertaining to recommended screenings for women for both breast and cervical cancer. On the breast cancer front, mammogram, as a routine test, is only officially being recommended for women over 50, and for cervical cancer, Pap tests are only being recommended for women over 21 and only once every two years.

After having the "early detection saves lives" messages rammed down our throats for the last 20-odd years, predictably there's now much consternation and brouhaha over these changes. Many of my friends have been asking what I think about this latest set of developments in the the World of Cancer.

So here's my two-cents for what it's worth.

If you've been doing your reading on the subject of breast cancer screening, you would know that these recommendations aren't new. In fact, the debate on this issue goes back at least as far back as the early 1970's. (See recent New York Times article, New York Times Op-Ed column, and Breast Cancer Action press release). The boffins have long known, that STATISTICALLY speaking, early detection and so-called breast cancer awareness, doesn't actually significantly alter mortality rates or outcomes at least as far as breast cancer is concerned.

All it's really meant for many of the breast cancer-stricken population is that they are simply in treatment for longer which may or may not be helpful. The reality is that for many women, breast cancer is still an aggressive disease for which there is still no cure. The thinking has been that the earlier your cancer is detected, the better the chance that you get to live a little longer, and of course the drug companies still get their annuity. On the flip-side, because of the over-success of the "early awareness" campaigns by the Pink Ribbon brigade, some detected cancers are being unnecessarily treated and/or operated on when in reality so they are so low-grade and slow-growing that they would have been better just left alone.

Statistically-speaking, the number of deaths prevented in screening women under-50 comes out to something like 1 in 1900 (a statistic apparently deemed uneconomic and insignificant by the boffins). Well I guess that's reasonable so long as you're not the 1 woman out of 190o, right ?

So this is all well and good, and I don't necessarily disagree with the new recommendations, but the bottom line is this. Both the old and new guidelines failed me, and will continue to fail those women who fall outside the statistical norms. Let's not get caught up in statistics when it comes to our own bodies. Let's have policies and a health system that encourages us to be our own advocates. Let people make up their own minds, in consultation with the medical professionals, as to whether they want the stress and other risk factors associated with cancer screenings.

If you think something is wrong, find your voice. Be heard. You might just save your own life.

Big Faker

It's funny how the old saying of life imitating art, more often than not, proves to be true.

Last night I was watching a rerun episode of Seinfeld: The Scofflaw. It was the one about George and Jerry's friend who admits to George that he faked having cancer, all the whilst taking advantage of Jerry's kindness, including buying a toupee with a gift card given by Jerry.

Turns out that recently there was a woman in Texas who did pretty much the same thing. She told everybody she had breast cancer, shaved her head to imitate chemotherapy effects, raised money for her "care", and then spent said money on a pair of fake boobs. (Read the full story as reported by MSNBC late last week).

Of course after watching the Jerry episode, and then hearing about the Texas story, I knew there had to be a sassy blog entry in there somewhere, so here goes.

First of all, I can't imagine the efforts that this women went to fake having breast cancer. Would it really be that much fun and worth it just to have a couple of hard-feeling, saline filled sacks inserted into your body ? I mean really, let's think about this. She had to keep her head shaved, wear makeup to imitate pasty yellow chemo-skin, always make sure she looked her worst, bring on the teary waterworks on cue, spend an inordinate amount of time lying on the couch watching a lot of crap daytime TV, have lots of dreary deep and meaningful conversations about her feelings, eat copious amounts of bland and tasteless food and then throw it all up to fake chemo nausea, write a bestselling book on "Why I Wore Spanx to Chemotherapy" or something similar, spend hours in doctor's offices reading about the scintillating adventures of Speidi in People magazine, and worst of all drape herself in garish pink survivor gear and bop out to "We Are Family"or "I Am Woman, Hear Me Roar" at any opportunity to rally the support of her community. Phew !

Nope ! It doesn't sound like something I would want to do. In fact I want to do just the opposite. Folks, I am going to fake NOT having breast cancer. Just think about what I'll have to do to pull it off. Spend my evenings draped in designer gear partying my ass off and all after 9pm, constantly laughing and smiling and lighting up rooms with my brilliant and interesting presence, field compliments on how beautiful I look and what am I using on my skin to look so youthful and healthy, never wear pink, excel at my high-paying professional career, go to the doctor once a year (and only to refill my Pill prescription), have so little time because of my busy and vibrant life that I am barely able to find time to blog about NOT having cancer, harvest my crops on Farmville, or update my status on Facebook, and best of all, enjoy and revere my REAL size 32A boobs !

Facebook, Farmville & Fighting Cancer

I attended a networking session last week where it was suggested to me that I might like to try Guided Imagery to help combat the stresses of dealing with my stupid cancer. My immediate thought was, why the hell would I need to when I have Facebook ?

I discovered Facebook about a year ago and I can tell you I have drunk a kegful of the Kool Aid. I LOVE it ! I get to be the "me" I was before all the cancer crap came into my life.

In my Facebook world there is no cancer. Just me and my virtual pinup board which charts, in pictures, the most wonderful moments of my life and is a rich history of friendships formed over many years from childhood, the schoolyard, university, work life, travelling abroad, marriage to present day. Life's magical journey, fully documented, and relevant to somebody, somewhere in the rest of the world.

I get to be witty, fun, mysterious, flirty, seventeen, twenty one, thirty five, world traveller, arbiter of popular culture, gossipy, icon of coolness, 80's music aficionado, literary genius, reporter of current events, tastemaker and above all a picture of health in the minds eye of my Facebook family. Well, at least that's how I like to use it.

I am surrounded by my loved ones 24-7, in all manner of far flung corners of the world and there is always someone to talk to, laugh at, gossip about, learn from, read about, catch up with, no matter the time of day or night.

Updating my Facebook status, although annoying and mundane to some, is a real opportunity for me everyday to find joy in the days events and shout gloriously to the rest of the world that my day wasn't wasted. With Facebook, I never feel alone. Ok, that's a multimillion dollar ad campaign right there. Excuse me whilst I go and call my agent to discuss terms.....

Whilst you're all still here for the ride, let me tell you about another joy of Facebook which I only just discovered. Farmville ! Yes folks, that's right, Farmville ! Why would I need to go into a darkened room with an aging hippy, listen to monotonous ohm chanting, to take myself on a mystical journey to find my inner fourth chakra that will apparently fight my cancer cells if I just focus, when I could just log on to Facebook and go play Farmville ?

What a wondrous and devilishly delightful guilty little pleasure this has become for me. There's something completely mesmerising and hypnotically peaceful, about virtual agriculture and animal husbandry. I find myself completely enraptured by the inner workings of my virtual farm, and take the responsibility of keeping my farm beautiful (and profitable) very seriously indeed. It's a gorgeous place I have created. A little cottage in the corner with flowers in the garden, surrounded by a hedgerow and all manner of fruit trees. Walking down a path and out the front gate, there are fields of potatoes, pineapples, coffee beans, carrots, a little pond with ducks and turtles, and whatever else takes my fancy that day. The animals are healthy and happy in their paddocks with hay and water troughs, and even trees to shelter under when the heat of the Farmville sun gets to hot.

In Farmville, the sun always shines, the animals make contented noises, and Mother Nature is generous with her bountiful gifts. My husband has also got in on the game now, and I think he also finds similar attractions in being able to retreat to the fantasy farm-life we have created, and spends time in the evening perfecting our own little slice of paradise. We want to live on our farm.

I know some people think Facebook and games like Farmville are a waste of time, but when you're living with cancer, the real world can be a lonely old bitch and sometimes it's nice to have a place to retreat to that doesn't involve wheat grass enemas, inner chakras and motley old hippy yogamasters.

Cancer Catchphrases

Here we are in November already, and somehow I managed to let another month slip by without managing to post nary a 1-line zinger or another rant and rave at Breast Cancer, Inc, or even another "Woe-is-me" type story. No excuses really - just finding it continually hard to collect my thoughts in a rational and logical manner, and more importantly in a form that is appropriate for a public forum such as this. Plus I like to inject a little comedic spirit into my writing, and sometimes, dammit, my funny just ain't there !

Anyway here I am now, so time to have a rant about something that's been on my mind lately. In the World of Breast Cancer (and maybe other types as well) you hear a lot of what I like to call "Cancer Catchphrases". I really need to take some kind of unscientific survey on how many times in a month I might hear some of my personal favorites.

DISCLAIMER: Now folks, I know people mean well when they utter these phrases, but when you've travelled the same road that I have for this length of time, you start to get a bit cynical. So apologies in advance if anyone is offended by my poking fun but if you'd been there you'd get it.

1. "My thoughts and prayers are with you"....Well what else does one say ? Hi ? Want to go out for lunch ? Got some really good gossip for you ? Yada, yada, yada.

2. "God only gives us what we can handle"....Thanks, but I would have preferred to handle a mansion on the beach, $10 million dollars in the bank and a completely carefree existence !

3. "Please let me know if there is anything I can do for you".....Sure. Do you think you could come over and clean my gutters, clip my dog's toenails, unblock the septic tank, and then cook me dinner ? How's Sunday for you ?

4. "Cancer can now be thought of like any other chronic disease".....Errrr okay, and it's raining Pink Elephants outside my window. See my earlier post for how I really feel about this one.

5. "Keep a positive attitude".....Mmmmm this is a tough one to mock but let me give it my best shot. It's a good thing, regardless of whether you have cancer, to maintain a sunny disposition, positive attitude and general zest for life. But unfortunately these things can't cure cancer. It's a physiological affliction and cancer doesn't care if you have a smile on your dial 365-days a year for 24 hours a day. If it did, you can be sure I'd be so juiced up on happy pills that the sun would shine from my proverbial you-know-what. I would be on Oprah talking about my best-selling book, "Stick it where the Sun Does Shine". People would pay millions to come and listen to me speak. Hell I would have my own talk-show, magazine and multi-billion dollar empire. Oprah would be calling me for advice. Okay enough of the fantasies. Of course I try to be positive. But sometimes it's hard. It's okay to have a blue day. It's not going to cause the cancer cells to multiply. It's perfectly normal.

6. "Cancer doesn't define you".......Okay. This one is my favorites for this month. I've been doing the rounds of various doctors and therapists and spending a lot of time gabbing about the stupid cancer. I hear this one ALL the time and I used to agree with it, but now I'm not so sure.

What does this really mean ?

Let's just take a routine day in my life right now. I get up and change the sheets due to the night sweats that I had the night before. I go and eat breakfast. Exactly 30-minutes after eating I take my chemo pills for the day. I wait around for at least another 30-minutes after that staying close to the bathroom in case of urgency's which can sometimes be a side-effect of the chemo. I take a shower, get out and look at my scars, and then put an SPF moisturizer on my skin because it cannot be exposed to sun for any length of time due to the chemo. I put another moisturizer on my hands and feet to try and keep "hand and foot syndrome" at bay, another chemo side effect. I blow dry my hair and wonder if all the hair that is falling out, is normal or whether it's the chemo again. I go to Pilate's to keep my surgically altered shoulder and back muscles limber, and keep my general fitness level up. I come home and have a lie down due to feeling a little nauseous and fatigued. I go through the mail and reconcile all the medical bills with the insurance claims. I pay the medical bills that the stupid insurance didn't cover. I ponder the pain in my right side and wonder if it's anything to be concerned about. I call my Doctor to schedule the next chemo appointment. I think about organizing a vacation around the next set of body scans and how to fit the chemo in. I sit down and eat dinner. Exactly 30-minutes after eating I take more chemo pills. I go and watch TV and zone out. I go to bed and take a sleeping tablet so I can sleep uninterrupted. I get up the next day and do it all over again.

Now I might be oversimplifying things a bit, and I've certainly left out the little things that can make a day great, but the fact is, a lot of my everyday life now is consumed with dealing with the stupid cancer. Cancer seems to be my job and I'm certainly a career girl. If I could resign from the job I would as it's certainly not the life I envisioned for myself. Is cancer who I am ? No I don't think so, but it sure does suck the life out of you and it's a struggle every day to remember who you were before the stupid cancer barged uninvited into your life.

Pink Fall

Well first of all, I can't believe it's been over a month since my last post. The reality is I think I just decided to take the rest of the summer off from this cancer crap, even though I still had a lot to say, I just couldn't really be bothered. Instead I travelled the world, spent inordinate amounts of time with a small needy dog, cultivated a vegetable garden, did a lot of nothing with my darling husband for three glorious weeks and generally did a great job of avoiding the dirty great pink elephant in the room.

But now summer's over. And what better reminder, then the rapidly approaching month of October. It used to be a month of pumpkin pie, falling leaves, glorious rich colors, Halloween, and all good things in bright, warm, earthy tones. But that's all so last century. Now, in the U.S. at least, October has been designated Breast Cancer Awareness Month. All of a sudden it seems everything around me is transformed into myriad ghastly shades of pink. Everywhere I turn, I see the ubiquitous pink ribbons and people walking, running, cycling, shopping, eating, baking, vacuuming, wiping, cleaning, cheering, dancing, all "for the cure".

At this point, in the interests of the full disclosure, I too used to secretly look forward to October, when I would drape myself in pride with all manner of garish pink, survivor-emblemed merchandise and take my place in the Survivors circle whilst bopping out to "We Are Family" or whatever the cheesy designated anthem was for that year, at one of the many breast cancer fundraising walks.

But I'm not doing it this year or ever again. It's just a load of bollocks and a great excuse for companies to market their products to the well-meaning consumer in the guise of "Breast Cancer Awareness" when all it really boils down to is profiteering at the expense of real people really suffering and really dying from this insidious disease. Of all the money raised via these Pink marketing campaigns, awareness products, and fundraising drives, I'd bet my left tit (if I had one) that the amount of money that actually goes to furthering the efforts to finding a cure, and more importantly the causes of this disease, is half-pennies on the dollar.

It's not enough to believe that "awareness" and early detection saves lives, what matters is "why ?" Unfortunately the answer to this question won't help the big corporates move their pink products or help the drug companies move their cancer drugs so let's all just sit back, don our pink ribbons and do our bit by being "aware" of breast cancer during the month of October and leave it at that. I mean really, if we did find a cure, what would we possibly do with our time during October otherwise ? Gorge on pumpkin pie, frolic in piles of leaves, take brisk walks on beautiful clear afternoons, make a Halloween costume, marvel at the spectacular bright orange, red, brown colors of fall, enjoy the bounties of life ? Ha ! How dull and so last century.

The Adventures of Pink Lady: Part I

I'd like to introduce you all to a good friend of mine -  Pink Lady -  as I have come to know her.  Or perhaps you know her by her full name, A Vision of Hope, part of the "Thomas Kinkade Inspirations of Hope Collection". She is the first figurine in the collection, to soon be followed by a spectre of lavendered loveliness called A Picture of Faith.  Apparently a portion of the sale proceeds of these figurines will be donated by their Creator to help fight breast cancer.  She and her pastelly-shaded friend retail for about $19.95 each.  But wait ! There's more ! This collection is limited to only 95 casting days  and each figurine is numbered.

So where am I going with this ?  There's so much material to work with here, especially for the likes of me, apparently living with my chronic case of cancer and feeling generally jaded and pissed off most of the time !  Ah but I digress: let's just start at the beginning shall we ?

I woke up with glee last Christmas to excitedly open the presents which had been collecting under our beautiful Christmas tree.  A mysterious box had arrived several days before addressed to me, and being a keeper of tradition, I diligently placed the unopened box under said Christmas tree along with various other boxes of all shapes and sizes.  (Work with me here people - I'm 38 years old, living with cancer - I need some childish excitement in my life !).  After tearing open all of my wonderful Christmas bounty, at last the mysterious box was before me and begging to be ripped open with all the energy of a five year old child hopped up on a keg of red creaming soda.  At last I opened the box and all was revealed.  

It was like the heavens opened, the sun shone down, angelic voices echoed in my ears, and there she lay.  In all her bedazzled pink lacy finery.  Such sculptural elegance and a body with a set of breasts so finely crafted,  she made Barbie look like a cheap whore.  My mind raced, my blood pressure increased with the excitement and emotion welled up in me.  Her beauty was unsurpassed, and as the tears rolled down my face, I knew that everything would be okay.  Because here she was in MY house.  A Vision of Hope. Edition #7783U.  Surely sent from heaven above (or maybe just China) to spread her message of love and devotion, and her commitment to a cause so just and noble, exemplified by the hidden pink ribbons in her elegant dress (how many can you find in the photograph ?).

Just by gazing upon her, I suddenly felt at ease and knew that all was not lost.  Even with two mastectomies, a bilateral oopherectomy, a shoulder that doesn't move, a nipple reconstruction, night sweats, hot flashes, chemo-damaged organs, radiation scarred tissue and a spirit sorely tested (but not broken), I realized at that moment that there dwelled inside me, nay all those touched by breast cancer, a Pink Lady who is ready to stand up and be counted and fight the war on cancer, all whilst dressed to the nines in an ankle-length pink frock.  And all this hope for the bargain price of $19.95.

Thank you Pink Lady #7783U.  I can't do it without you.  You inspire me to greatness.  As does the $0.000000001c (or thereabouts) that has been donated on my behalf for the simple act of purchasing you.

Further Reading:

• Breast Cancer Action Project: Think Before You Pink
  

Yeah Right !

So I have spent the best part of the last month abroad relaxing with family and friends and feeling really good and pretty darn normal. As always though it's nice to get home and sleep in your own bed and be surrounded by what you know.

Trouble is now, I seem to finding myself feeling a bit down. I think I am just starting to process the enormity of this last piece of crappy news which I guess is only natural but makes me want to just hibernate for a bit and not really talk to or see anybody. I have decided the best way to describe what I'm feeling is "emotional constipation". Having trouble articulating how I really feel about the whole situation and basically showing any emotion over it whatsoever. Some people call that being very brave. I just call it a bit of good old fashioned denial. I'll come to grips with it sooner or later, but not just willing at this point to waste a perfectly good summer on tears and fears. I think I'll take the metaphoric laxative after Labor Day.

So what better way to deal than to have a bit a of rant and rave on the old blog !

Recently I read an article in the New York Times by Gina Kolata entitled Grant System Leads Cancer Researchers to Play it Safe. The basic gist of the article is that cancer researches in the U.S. are increasingly only able to access grant money if their studies are judged by the grantor's to have a reasonable probability of success which, the article asserts, is stifling the chances of more radical and innovative research studies to the detriment of making any real progress on the war on cancer.

To be honest I'm not surprised at the findings of this article. If there is any chance of finding a cure for cancer, I don't believe it will come from a country where health care is basically a for-profit business run by corporate Gargantua's. What economic incentive could there possibly be in finding a cure for a disease that generates billions and billions of dollars in profits particularly for the U.S. health care industry. Can you imagine a world without cancer ? I wish I could but don't think it will happen in my lifetime. An entire subset of the health care machine just goes away ? Yeah right ! Poop to that: physically and emotionally.

Cancer Schmancer

If ever there was a word that elicits the darkest of emotions and downright mortal fear in people, it would have to be "cancer".  From it's seemingly innocuous and humble Latin meaning of "crab", the word now packs far more evil and morbid connotations. 

Cancer a: a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis b: an abnormal bodily state marked by such tumors; something evil or malignant that spreads destructively (Merriam-Webster Online Dictionary) 

 It's sort of like the word "bomb".  Who could forget Ben Stiller in the film Meet The Parents where his character has an altercation with the flight attendant after daring to utter the word "bomb" whilst aboard an aircraft.  "It's just a word ! Bomb, B-bomb, bomb, bomb !!!!

This past week has seen me making the rounds of family and friends to inform them of this latest turn of events.  To be honest, having to do this is what instills dread in me.  For most people hearing the word "cancer" is completely devastating and utterly shocking under any circumstances.  

I find myself strategizing about how I think each person will react, thus tailoring my delivery to try and ease the blow.  But really, everybody reacts differently and ultimately no one really knows what to say.  I mean,  what do you say ????

Well you know what folks ?  The fact that you don't know what to say is a-okay with me, because I'm not really looking for a response - I just want to let you know this bit of information because you're an important person in my life.  I don't really want to sit and talk about my entire medical file nor do you want to listen to the boring details of my cancer.  What you and I both really want to do is move on and talk about something far more interesting like Danielle's latest exploits on The Real Housewives of New Jersey or the latest developments in your love-life, or those new shoes I just bought, or when we are going out for dinner next.  

Like the b-word was to Ben Stiller's frustrated character, the word cancer is just another word to me.  It's use does not crush my spirit nor does it fill me with blackness.  In fact, I  think it just spurs me to keep living an otherwise wonderful life and focus on what is truly important.

So folks.  It's just a word.  I'm dealing with it, and if I'm not I'll let you know.   

Cancer Schmancer !  

Further readings:

• Talking with Friends and Relatives About Your Cancer American Cancer Society
  

Do You Feel Lucky ?

I heard from another friend today who has someone within his circle who has just been diagnosed with a form of lymphoma.  The person in question is a single, 38 year old interior designer who was recently laid off from her job.  So you know where I'm going with this right ?  Yep, you got it - no health insurance !  This is a topic that's never far from my mind but this story really got to me.

Imagine, if you will, what it is like to hear the words "you have cancer".  Before you have even had time to process that horrible thought, try piling on "and you need these treatments in order to save your life, and how do you intend to pay for them if you don't have health insurance ?".  My head simply spins when I think about this and I can't really fathom the horror of this poor woman's situation. 

I am one of the "lucky" ones who has excellent and affordable health insurance through my husband's employer so I only have to deal with the "you have cancer" bit of the nightmare.  But that's the point.  Yes I am lucky to have the health insurance but WHAT IF ?  What if he lost his job and couldn't find another one by the time COBRA insurance ran out ?  What if he decided to divorce me ?  What if something catastrophic were to happen to him ?  What if I were unable to find a job carrying health benefits ? 

What if , what if , what if ..............

The reality is, if I were to find myself without employer-sponsored health insurance, I would need to try my luck at buying insurance on the open market.  That's about the time that you get hit with the next whammy.  As the "lucky" one living with cancer, you are automatically deemed to have a pre-existing condition by the insurers so in order to protect their downside risk you will be faced with having to pay an enormous monthly premium in order to maintain your policy.  That's if you are "lucky" enough to live in a State that mandates your right to buy health insurance despite a pre-existing condition.  (Click here for further information on obtaining health insurance in your State).

Now I'm no professional commentator on health care reform in the U.S., but as an ongoing consumer of health care in this country, something just doesn't feel right.  Health care   shouldn't be sold as a luxury commodity nor should access to it be something that's determined by your station in life.  

So to all of you who feel "lucky".  Remember this.  You might only be one "what-if" away from being in the same horrible predicament that my friend's friend currently finds herself in. Health care is a necessity and no-one should fall through the cracks just because of an unlucky what-if.

Further reading:

• The Economic Case for Health Care Reform White House Council of Economic Advisers
• Should Health Insurance be Mandatory ? Room for Debate Blog, New York Times

Jeanne Sather on "Cancerversaries"

Words fail me at this point.  I don't think it gets much tackier or infuriatingly stupid than this little snippet as reported by Jeanne Sather on her excellent blog "The Assertive Cancer Patient"

Is this cancer culture ????

[Please click on Title to link directly to Jeanne's post]

Breast Cancer Is a Chronic Disease ? I Don't Think Breast Cancer Got The Memo!

Everybody has cancer.  Or so it seems.  I have it.  My good friend has it.  Another good friend had it but she's dead now.  Another good friend's friend had it and she died last Sunday.  What's wrong with this picture ?  

My scans this week confirmed that my cancer has returned for a third time.  Luckily, the cancer is localized to a couple of lymph nodes in my neck and the rest of my body remains clear so I am breathing again for the first time in a week.  My Doctor was very upbeat in giving me the results and I appreciated her tone.  And then I heard her say "we can treat it like a chronic disease", which I guess implies that the disease can be managed much like diabetes, hypertension, etc.  Now this is not the first time I have heard this line.  This seems to be the phrase du jour for those of us dealing with recurrent and active cancer.

I'm just not buying it and nor does it seem is the Breast Cancer Action ("BCA") advocacy group.  Barbara Brenner recently wrote an excellent article on this very topic in The Source, the BCA's newsletter, entitled Treating breast cancer as a recurrent - not chronic - disease.  The article discusses the use of certain words and terms  by the so-called cancer industry  and raises the concern that the seriousness of this illness is being  downplayed, to the detriment of true breast cancer prevention.  This is despite the fact that millions of women are still being diagnosed with a disease that has no cure, and who then have to endure horrendously invasive and debilitating treatment options that offer no guarantee of successful outcome.  

The bottom line is this.  Having something in you that wants to kill you (no matter what you do) is scary.  Living with the kind of uncertainty every day that turns a head-ache into a brain tumor, or an arthritic hip pain into a bone cancer, or a cough into a lung cancer (you get the idea) really puts a dampener on things.  Believe me, I am taking every piece of insurance that is being offered to me with respect to treatment but I am under no illusions as to what my likelihood is that I will ever be rid of this thing.  I don't believe that what I have is a chronic illness. It's way scarier than that.

What Am I ?

In an earlier post, I mentioned the issue of identity within the cancer culture, something which seems particularly significant within the so-called breast cancer community.  Since my original diagnosis I have struggled to maintain and shape my identity within the breast-cancer realm.  On the one hand, I feel angry that I have to some extent lost the identity of the person I was before diagnosis but on the other hand I continue to struggle to determine my identity now. Mostly, I just feel like an ordinary normal person dealing with extraordinary circumstances the best way I know how. But the cancer culture that I inhabit seems to want to constantly label and identify me in a way that just doesn't seem to fit me as an individual.  

The breast cancer community has  adopted it's own vernacular, for which the usage of certain words appear to seek to make the disease more palatable  and marketable as a cause to the rest of the world.  Pink has also become the color of choice to symbolize the cause and underpin the (mostly) feminine nature of the disease.  Too bad if you're a man with breast cancer I guess.   At this point,  I don't really wish to engage in a debate on the for's and against of the apparent commercialization of the breast-cancer cause,  except to say that there are certainly aspects which I find quite disturbing as an unwilling bystander in the circus of Pink. (Further reading on this particular subject is listed below).

The well-known activist author, Barbara Ehrenreich, wrote an extremely enlightened and honest article for Harper's Magazine in 2001, entitled "Welcome to Cancerland".  In this article, she points out that there is no single noun to describe a woman with breast cancer.  She is either a patient, a victim, or a survivor.  She also never suffers, struggles or endures but instead bravely battles or  fights with the disease and then emerges a victorious soldier worthy of donning the esteemed mantle of survivor to proudly display to the world at a dizzying array of pink-colored events.  Other cursed women become sisters, part of a larger sisterhood who are inherently expected to provide unending support and impart wisdom and hope to the latest additions to the sisterhood.  As Ms Ehrenreich points out: 

"it is the survivors who merit constant honor and acclaim.  They, after all, offer living proof that expensive and painful treatments may in some cases actually work."

Well what about the rest of us ?  Those of us who live with cancer everyday because current treatment protocols simply aren't curative. Where do we fit into all the pink hoopla and pageantry ?  If we are not survivors then what are we ?  Are we  failures, disappointments, inadequate letdowns, useless , etc ?  

I don't really have an answer to this question but I do know that I just don't identify with the pink ra-ra chanting sisterhood of survivors which the rest of the world seems to want so desperately for me to be a part of.  It's not okay that I have cancer.   Having this thing in me doesn't make me a hero and I don't wish to be cast as an inspiration to anyone.  And most of all,  it certainly isn't cool or glamorous in any way shape or form and I don't wish to adorn myself, my house, my neighborhood, or my office in tacky, sappy, syrupy pink merchandise.   It sucks and I'm angry and pissed off about it but this doesn't mean that I need to find solace in the arms of a well meaning support group or counsellor.  I just want to get on with it and I don't want to do it wearing a pink t-shirt emblazoned with the word "Survivor".  

Further reading:

• Q & A with Samatha King, author of Pink Ribbons, Inc.
  
• Hall, Lisa. and Donovan, Brian. "Popular Culture Representations of Breast Cancer and their Impact on Women of Different Ages"
  

How Did I Get Here ?

So here I sit the day after the important Doctor's appointment.  I was right.  The cancer has returned.  The extent to which it has returned will be determined by a plethora of bodily scans, tests and examinations which I will  undertake early next week.  Ah the joys of having one's body pumped full of a substance so radioactive that it arrives with your nurse in a locked thick metal box about the size of a workman's lunchbox and you are advised not to be around small children following the scans for at least 24-hours.  Sorry kids, you can't go to Aunty's tonight because she is radioactive. Seriously !

But I digress.  I should at this point clarify how I got here.   

In 2004, after finding something weird in my breast (not a lump but a certain undefined hardness in the breast tissue), I dutifully went off to see my Nurse Practitioner who promptly said she couldn't feel anything, implying that what I was feeling was imaginary.  Despite my protestations that I wasn't imagining it I was authoritatively told that with no family history of breast cancer, no apparent risk factors and my relatively young age there was no way I could possibly have breast cancer.  

To make me feel better she deigned to indulge me by prescribing a sonogram which once again showed nothing.  To be honest I don't even remember mammogram being discussed.  I was sent away with the advice that perhaps I could come back in 6-months for a checkup and in the meantime would I like to try breast massage ?  Oh My God:  here I was hoping for scientific explanations from someone still living in the Age of Aquarius.  

Now I can't tell you exactly what drove me except that I knew I needed some definitive answers and I wasn't getting them from Nurse Flower Child.  I took it upon myself to go and get a second opinion.  I found a lovely husband and wife general medical practice who immediately sensed my concern (despite their not being able to feel anything either) and sent me for a mammogram.  This is despite mammogram not being recommended for women under-40, with no risk factors and especially those with small dense breasts (yes that would be me).  

As a result of the mammogram and later biopsy in April 2004, at the ripe old age of 34-years old, I was diagnosed with Stage IIIA invasive ductal carcinoma with lobular features, hormone receptor +, HER 2 Neu and BRCA1 positive status.  This is a very long-winded way of saying you have a type of Breast Cancer which is caused by bad genetics, is fed by your body's oestrogen,  and has spread to your lymph nodes.  Not good news. 

It was a rough diagnosis to hear and the treatment that followed was even rougher.  Won't bore you with the details but think highly toxic chemotherapy, radiation, umpteen surgeries and continuing anti-hormonal treatments.  Anyway the moral of this part of my story is that you really have to be your own advocate and push for explanations.  Listen to what your body and mind is telling you and exhaust all avenues of medical practice.  Don't ignore your sixth sense and certainly don't listen to Nurse Flower Child.  Just push and push and push until you get the facts from which you can make your health care decisions in consultation.  

In June 2007, the cancer found it's way back into the lymph nodes around my collarbone. Once again,  I found it and brought it to my Doctor's attention.  Don't know why I was drawn to this particular area of my body but I had developed a fidgety habit of brushing this area with my hand whenever I sat at a desk and of course one day I felt something. Weird I know and although I'm most certainly a religious skeptic I can't help but wonder if there is a higher power at work or whether I am blessed with an exaggerated sense of  intuition.  In any case, I can't overestimate the value of being constantly aware and vigilant when it comes to your body. A bit of surgery and radiation followed along with a new anti-hormonal treatment which bought relative peace for the last two years.

And so here I am in June 2009 about to enter the ring for the third time.  I feel like I should be more upset than I am.  But at this point I feel like an old hand at this stuff.  I seem unable to be surprised by anything these days and to be honest I have lived with this cancer crap for so long now that this new round is not really a stretch for me emotionally.  Of course it will be for everyone around me, but not for me.  I will just keep doing what I do and continue to seek out the best treatment options but most importantly I will just keep living my life the best way I know how.  Cancer or no cancer.  It doesn't matter.  Life is there to be participated in, not viewed from the sidelines.  The cancer will have to fit into my life.  I hope to talk more about how that happens in later postings.

The First Post......

I am writing this first post on the eve of an important Doctor's appointment.  By tomorrow morning at around 10.30am I expect to hear those three little words, "You have cancer", for the third time in five years.  

I have discovered a new lumpy thing in my neck - around the site of my second occurrence (more on that later).   At this point, I don't think it's a swollen gland, torn ligament, pimple, boil, benign cyst or anything else that has been posited as a much more palatable reason for this lumpy thing in my neck.  Nope, fifty bucks says the news is going to be bad.  

And so once again,  I find myself thinking about making the transition from "Survivor" to "Patient" and all of the stuff that comes along with this identity shift.   As an unwilling inhabitant of that alternative universe,  aka the "Cancer Culture" for the last five years,  I have decided it's time to start documenting my "journey" (hate that term) and provide some type of commentary on what really goes on in this strange reality that I inhabit.  

At the very least, this blog is therapy for me to share and talk about what I want in an unemotional context and, at best,  it may provide some kind of insight as to what it is to live with cancer in today's society.  At worst, it may just become a forum for me to vent my frustrations and and anger at life, the universe and all that jazz.   But in the end, the tone of this blog will be my prerogative as author and participant so please just bear with me.