MBC Awareness Day - The Darkside of the Pink Ribbon-Fest

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Today, October 13th, is Metastatic Breast Cancer Awareness Day. YES, this select subset of Journeyers get one day out of the entire Pinktober-fest. One day out out of 31, to bring attention to that form of breast cancer that claims the lives of women & men at an average rate of 40,000 per year. That significant statistic is only for the U.S. Approximately 470,000 die each year world-wide. Such little attention has, historically, been given to MBC - either in "awareness" or in research. MBC is the dark underside of the Pink Ribbon. I do not often paraphrase Stalin, actually, this is my first time, but it seems fitting. Sadly, in the world of MBC, one death is a tragedy but thousands seem to be merely a statistic.

I wrote the following in February 2010 - just over 6 months after my initial diagnosis; while I was still in the throws of multiple surgeries; and while I was still in the midst of embracing my own cancer journey. This was in response to the dearth of information and mis-information that I was having to contend with as I groped my way along a well-chartered, but equally mystifying path. It seemed apropos to reprint again, as I continue to stumble along the routeway of MBC.

Please to Meet You...Can You Guess My Game?

You pay homage to me
With candlelight's,
With relays, and
Pale pink parades.
You go through these motions, notions
and emotions half-veiled and dazed.
Caring, yet not comprehending the dark nature of my true game.

I have marched on,
I have latched on,
I live due to the choices you have made.
You're dumb-founded and scared, and
Emboldened and brazen.
And I enjoy this pink badge of honor,
Celebrating the carnage left in my wake.
Yet you don't seem to understand when you meet me,
Thou you flippantly market my game.

You clamor to the life I've taken -
Fear gripping you like a vise,
Yet celebrating with ribbons and vigils
And solemn events to light up the night.
Yet I still seize, clutch, and penetrate,
Creating breastless creatures with the disease I rake.
And in response you raise your banners and tie your pink laces,
Feigning a civilized calm, within the din of despair,
Yielding and railing at the call of my name.

I enjoy an enviable market niche,
A public relations dream with a broad reach.
I bring many persons together
To walk,
To share,
To cry, and
To prescribe.
Together you'll meet me, step-to defeat me and fight,
While still shunning from the meaning of the game that I play,
For the "greater purpose" you cling to me me, giving life to my name.

I'm embraced,
I'm battled,
I'm run for, and against.
I raise warriors in pink,
I raze survivors inside and out.
You speak awareness of who I am,
Yet I'm still the ever uninvited guest.
You know me, but you choose not to see,
Past the Madison Avenue glitz; and
In the whispers of your fears, my name is endorsed on your lips.

You make me t-shirts and teddy bears,
Coffee cups and pins
You celebrate my name,
In the hopes that YOU will win?
I'm on bracelets and billboards,
T.V. ads and magazines.
You use me to bond women together,
Through hats, key chains and I.V. scenes.
You want to be rid of me, wrench me from your breast,
While still elevating my name like some personal test.

You breathe and drink me, in
The chemicals you create.
The ones that both heal and do harm.
You willingly open your body to my sin.
Your lust for luxuries simply invites me in.
Through cosmetics,
Beauty creams,
Lipsticks,
Shampoo,
Hair color,
Deodorants, and
Perfumes.
You gulp me down in plastic bottles.
Swallow me hungrily in pills.
You ingest me in the foods you eat,
And still,
You come gripped with shock and dismay,
And curse when you greet me,
Still stoically refusing to take personal ownership of my game!

I bring sorrow,
You bring hope -
And wrap yourself in courage desperately borrowed.
I bring profit -
Greedily spawned from your daughters,
Yet you say you know me, with no knowledge.
And you keep coming to me in droves,
Throwing away your intuition,
Innate sense and well being, no longer trusting your own.
You claw at and cling to the coattails of Big Pharma,
Opening your veins up to the corporate dogma.
Good patients burn flesh and sear mind under the guise of a pink banner,
And savor Red Devil cocktails, while
Quality of life becomes nothing but face-book banter, of
Buzz words, fly-bys, statistics, wigs, and trials,
As you uncomfortably nestle blindly in my surreal guile.

Am I nature,
Am I man-made, or
A product of freakish DNA?
You don't know,
You don't ask,
You lock-step on.
You want only to walk on the pink runway,
Fear as your drum.
All the while feeling empowered,
Rallying with the pink-media monster, who
Romanticizes the call,
To join the growing roster forged in my name,
And trust that I am very pleased to shroud you in the nature of my game!

- TCShanker (aka "TC")
February, 2010

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To gain greater insight into the MBC Community; the grass roots movements to educate the general as well the Pink-Public as to MBC; and to make this deadly aspect of breast cancer a priority in funding & research, please explore the following resources. Thank you for taking the time this October 13th, and beyond.

Metavivor.Org
http://www.metavivor.org/index.html

From support groups to funding vital research, our programs sustain the power of hope. Passionately committed patients ourselves, we rally public attention to the urgent needs of the metastatic breast cancer (MBC) community, help patients find strength through support and purpose, and make EVER dollar count as we work with researchers to regain longevity with quality of life.


Metastatic Breast Cancer Network
http://mbcn.org/

MBCN is a national, independent, nonprofit, patient advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer . We strive to help those living with stage IV breast cancer be their own best advocate through providing education and information on treatments and coping with the disease.
 

National Foundation for Cancer Research

http://www.nfcr.org/metastatic-breast-cancer-research

Even after successful removal of a primary tumor, cancer patients still live under the constant fear that a few cancer cells have escaped the surgery, and that these cells may eventually become secondary tumors in other locations of the body. Presently, there has been insufficient research on the root cause of metastasis, which means that there are no effective medical strategies to prevent or stop cancer once it has spread. Although chemotherapy drugs are used to inhibit the cancer metastasis, this form of treatment often leads to debilitating side effects which diminish the quality of life for patients and their families.

There is an urgent need f or better methods to prevent and treat metastasis. Due to the complex nature of this aspect of cancer, extensive research collaboration among scientists is essential to tackle this problem. Critical as it is, research funding in this field is severely limited. Of the $6.2 billion dollars allocated to the National Cancer Institute for cancer research, less than 1% of that budget focuses on research trying to understand the fundamental mechanisms of cancer metastasis.

The metastasis of cancer cells is the greatest cause of lethality from tumors. Despite this fact, metastasis remains a relatively understudied area with a corresponding lack of understanding of the metastatic process. The research presented above has already provided new insights into the causes and mechanisms of cancer cell metastasis.


 

Jumping on the Pink Bandwagon

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Maybe I have been too judgmental. "Awareness" remains a critical need during Pinktober, and throughout the year. Case in point:

I walk into our neighborhood Safeway store last evening with my 10 year old son. As I am in the check out line, the 10 year old spies a large handwritten sign that announces: REGISTER NOW TO WIN AN iPAD2!

Mom, can I go check it out?

He goes over to the table with the display. Yes, it is to benefit breast cancer, but it does not say which pinkindustry is sponsoring the drawing, the cost of tickets, or which non-profit is going to reap the proceeds. And, there are no entry forms

The manager eyes my son investigating the table, and then me. He walks over to me and informs, enthusiastically, that: yes my son may enter to win, would I like one ticket for $10 or 5 tickets for $50 (retail price break).

I ask who is sponsoring: Safeway (obvious)

I ask to whom is it benefiting: Breast Cancer (okay, obvious again...he must think I am a moron at this point)

I am still gnawing on the price break.

I rephrase. To which organization will Safeway be ~ donating (?) the funds: the funds will stay locally (what does that mean)

Deep breath...he is management after all.

I probe further. Which local organization will Safeway be giving the money raised from the ticket sales for the iPad2. Safeway  (WT....???)

Oh, Safeway has its own breast cancer organization: No, um, some money will go to Tucson (okay, I am in for a pound now)

Which organization in Tucson: Oh, there a lot of them in Tucson that do good work for breast cancer

And those would be: The large medical ones (price break goes to priceless)

I tell him that I think I am going to pass on purchasing the tickets. He still tries one last shot at inducing me to buy: Oh, and some of the money is going to Susan G. Komen, they do a lot in researching breast cancer awareness! That is a great cause.

Oh yes, yes it is!

Random Sunday Thought (9/25/2011)

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Why can I never remember how to spell
M-E-T-A-S-T-A-T-I-C;
M-E-T-A-S-T-I-S-I-S; and
M-E-T-A-S-T-A-S-E-S and all variations thereof?
Why can I never pronounce these words without spewing spittle?
My fingers just can't type out the words comfortably.
They always hesitate on the key board while my brain stutters
...................M-E-T-E...<oops>...M-E-T-A-T...<oy>...M-E-T-A-S-T-I...<#%&!!!!!!>
The syllables trip over, around, and get stuck under my tongue.
And the letters just never look right juxtaposed together.
METS tourettes, I suppose.

"What is important to you"?

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I have been hearing...and listening...to a great deal of frustration from friends and family. My cancer journey is confusing and scary for them, understandably. Equally understandable is their frustration and confusion as to my choices in treatment and management of what has now evolved into a chronic disease. I am trying to address each of those I love and care about individually. To reassure. To help them, if not understand, to at least accept. Below is a compilation of several letters that I have written to some of my loved ones. I share them here, first, because this is where I process my cancer journey. Second, because I hope that through the venue of my blog understanding and/or acceptance will come. I have to hope. WARNING: Content May Contain Concepts of Emotional Sappiness.

Dear Loved One:

I am going to start this letter with the single most important message I wish for you to take away, and that is that I love you!

Also, you need to know that you are important to me, and I am listening very closely to your concerns. I know that you are worried. I feel deeply and appreciate your concerns...truly. 

   

I know that the prevalence of pink & pretty media coverage regarding breast cancer makes it seem that great leaps and bounds in treatment options are available. I also know, from experience, that when Susan B. Komen and their ilk speak about "cures" and "awareness" they are speaking only of early stage breast cancer. That is, breast cancer that is confined to the mammary glands, and which can be "curable" but only to a certain extent. Susan G. Komen is not about advanced stage breast cancer.

My cancer was initially discovered when it was already late-stage; and is of an infiltrating / invasive nature. Remember, this was despite years of mammos misidentifying the tumor growth solely as fibrous breast tissue. When breast cancer has metastasized, i.e., moved out of the mammaries, treatment options are few and most are longshots in achieving a positive prognosis. Regardless, I have not been sitting idly. Nor, should you presume that I am acquiescing, giving in, admitting defeat, etc. to a chronic disease.

Yes, it is true that the MD community is a bit pessimistic about my situation - save, interestingly, my oncologist who is excitedly on-board with my current protocol. Well, maybe not excited per se, but at least supportive. You must trust me, I have researched and continue to research extensively my current treatment plan. The MD community (save for my oncologist) would like to go "full guns" and "aggressive beyond measure" (these words from the radiation onc). And, according to same radiation onc, going "full guns" will only give me a 20% chance at a 5 year survival. You must remember: there is a vast difference between survival and living.  

The surgical onc clearly does not want to do the surgical "full guns" and "aggressive beyond measure" surgery -- a full axillary nodal dissection. Why?  Because  it is "messy" trying to avoid all the clusters of nerves, blood vessels, and arteries. And, she acknowledges that there is no difference in the 5 year morbidity with women who have had a full axillary nodal dissection, and those who don't. She does, however, give me a 25-30% likelihood of long term nerve damage.

I cannot articulate the appreciation I feel for you own efforts in researching treatment alternatives for me. Your own stubbornness and deep caring are two of your endearing qualities. I also appreciate the emotional difficulty you are having in sharing your research findings with me. Nothing about cancer is easy. Unfortunately, your research brought nothing new or surprising. I was aware of the challenges with my prognosis. Rightly or wrongly, I did not feel that I should dump all of the "lovely" news on you in one dose. It wouldn't be fair to you or me. Why? Because I am still coming to terms with what the medical community is saying to me. I am not prepared, yet, to be a strong shoulder for you while I answer your questions. Selfish, yes. And unapologetically so. I am getting good at being selfish these days. 

As I shared with you, the radiation oncologist here in Arizona -- who, btw is touted as the "go-to radio-onc" (imagine me raising an eyebrow of doubt) was not as forthcoming as the one you communicated with. Radio onc's 20% chance of a 5 year survival was predicated on me first going through the surgical "debulking," followed by an aggressive protocol of  "clean up" with broad-based radiation of the neck, shoulders, axillary and chest wall.

I asked radio-onc how long after such intense radiation exposure would my body begin to show signs of damage to my heart and lungs (predictably leading to heart and pulmonary failure). She would not answer.

My individual situation...my reality that I have to live with, is that I must continue with life-as-is. I am fortunate that my work is something that stirs my soul, because my working is a direct and palpable benefit to my family. Family is what is important to me. Indeed my kids come first. I will never be selfish when it comes to their immediate and long term futures. Each and every decision that I have made over the last 25 years has been about family and building a life and future for my children.

I will also not allow this chronic illness to turn my family into another "recession statistic" -- funneling funds into a medical industry that holds no hope for me. I secured Husband's agreement on that one. What that means is that I will not hurt my family financially while chasing medical pipe dreams. The decisions and treatment protocols I have decided upon (with, again, the surprising support of my medical onc) are to help me manage my chronic illness and still have a quality of life with my children, now. 

I can honestly say, I am feeling better this week - week 3 of my protocol. I do "suffer" immense nausea and fatigue after the high dose vitamin c IVs, but it passes within an hour or two with the help of lime slushies.

You will have to trust me. Your trusting me is important.
The health (emotional and physical) of my children are important to me.
Making sure my children have a competitive edge and a fighting chance in this world that seems like it is being turned on its head is important to me.
Being strong for my children, while I can and when they need me now, is important to me.

Dear-heart, we are all going to die at some point, no? That is the life-cycle. It is also very possible that the cancer may not be what kills me. It is as likely that a reckless driver on the interstate, or the space debris currently falling to earth is is what causes my death. Old age may be what finally takes me. The point is, none of us know with any certainty how we will die...only that we will.  Because of a bizarre turn of events, I am "fortunate" to have (potentially) prophetic knowledge of my demise. Embracing my mortality on a daily basis does color my daily responses and perceptions. 

What is important to me is that the time I am here is spent with meaning and with as many quality moments with those that I love. Giving up sitting on the sidelines at my son's soccer practice, so I can chase a possible treatment far away from him, pales in comparison. Attending my son's concerts; making his lunch in the morning while quizzing him on science vocab or math problems; reading with him at night snuggled in his bed together -- I would never make a choice that would steal those moments away from me, now. These moments cannot be recovered, and are real now. The future, under the best of circumstances is unpredictable. 

Not being able to have my girls reach out and share with  me all of their daily joys and sorrows (18x a day -- really!) would decimate me emotionally. Being a sounding board for the volatility of their developing adult-hoods is the reward of parenthood. My girls are growing up, now.  And there is Husband. He has been my BFF and "work in progress" for 25 years now - and I have not finished with him as yet! He is not getting out of this marriage that easily, especially when he is yet to be housebroken.

Missing all of this while I am here in the moment feeling strong and relatively healthy, well, that would kill my spirit long before my body would crumble.

~TC

Another "Lens" in Which to View the Dreaded "PINKTOBERFEST"

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By: Dawn

Maybe I should make this entry pink, pink lettering on a pink background, totally unreadable, just a sea of pink. Why would I want to put all this effort into writing a blog entry just to have it unreadable? Why do people keep making breast cancer seem like a happy, fun, feminine, cool, trendy disease?

The facts aren’t that happy. Sure, it’s not the death sentence other forms of cancer are. Let’s face it, some cancers are quick, brutal, and rapidly deadly. For those cancers, the question isn’t “if” but “when.” I have a friend who has a specific type of cancer that has a 0% five year survival rate. ZERO percent. I don’t know what the one year survival rate is, but it’s not great. Another of my friends was told she’d live 12-18 months. She fought hard. She battled mightily. She lasted 15 months if I count correctly. Compared to those types of cancer, sure, breast cancer rocks.

But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is? How survivable it is? How much progress has been made?

For starters, when we talk about “surviving” with breast cancer, we speak of surviving five years. The term is “the five year survival rate.”

Pardon me for not being too chipper about that. I’m coming up on my second cancerversary.

If a woman happens to be Hispanic, which I am not, she’s more likely than other women to get aggressive breast cancers and die from breast cancer . Were you aware of that?

I’ve heard people, endurers as well as the non-effected, say, “At least the tumor is estrogen (or progesterone) receptive. There’s a pill for that.” Yes, indeed there is. And those tumors tend to grow more slowly. See how aware we all are? Yet, not 100% of all those hormone receptive tumors respond to medication . In fact, for people who are progesterone positive, under 20% respond to hormone therapy. Oops! Wasn’t aware of that fact.

Many people are also aware that another type of cancer, the type I had, is particularly aggressive. It’s called HER-2+ breast cancer. But joy of joys! Herceptin cures it! And if it does come back, “you just do herceptin treatments for the rest of your life.” Well, that’s probably correct. As long as the herceptin continues to work. Of course, Tykerb is also an option. But sometimes that doesn’t work, either. And, the woman dies.

We are also all aware that breast cancer is curable. And that’s true. To an extent. Most women don’t die from the cancer in their breasts. They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones. If the cancer just stayed in our breasts, we’d be fine. Cut it out, chop ‘em off, radiate ‘em. End of story. However, that’s not how breast cancer works. There’s never, ever a guarantee that even the smallest spot of cancer hasn’t sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life. Yippee.

Many of us are aware that there are things we can do to “prevent” breast cancer. No, not really. Other than cutting off breast buds at birth, there really isn’t anything that “prevents” breast cancer. There certainly are ways women can reduce their risks, their life time, risks of breast cancer. These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later. These are not “preventative” as we’d like to think. Breastfeeding is not the same as wearing a condom to prevent pregnancy. A condom is, what, 99% reliable although users of them tend to be less so? Breastfeeding your baby for a year, two years, a total of 13 years spread over several children, does nothing more than reduce one person’s life time risk of getting breast cancer. It’s not the same as, say, not smoking to prevent lung cancer. Being thin, fit, young, and nursing does not mean one doesn’t have to still screen and hope for the best. Many women aren’t aware of that. When I was diagnosed, some ardent breast feeding person who was touting breastfeeding as “preventative” had the gall to ask me if I had a family history, as if…whatever. She said she was counting on nursing to “protect” her. Idiot. Simple stupidity. Further proof that the USA sucks at math and mathematical reasoning.

Let’s talk about long term survival. We are aware that a lot of women survive for years. Women are typically over 60 when they are diagnosed. Let’s face it, when you are in your late 60s or your 70s or older, “long term” takes on a whole different meaning than when you are in your 20s or 30s or 40s.

And none of this takes into account the negative effects of cancer treatment on a person’s general health. For starters, cancer treatment can lead to new cancers. We are all aware that radiation can cause cancer. Cancer treatment often includes radiation. There’s a double-edged sword. Better yet, there’s the chance that treatment will cause heart, liver, or kidney damage. The Tykerb I take now is black box labeled for liver damage, “sometimes fatal.” Nothing like killing yourself to stay alive.

Herceptin (and Tykerb) can also cause heart damage. My radiation treatments also got a part of my heart. Isn’t that swell? Oh, yes, my lung, too, was radiated. Heart, liver, and lungs! Oh, my!

There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.

I don’t think most people are aware of this. That to “survive” does not mean to “get better” and that life isn’t always pink and rosy are not parts of awareness.

Yet, we are aware that there’s a “cure” out there. In fact, when it comes to breast cancer and pink, “awareness” seems to be synonymous with “cure.” However, one would think that if an organization were really, truly concerned about a “cure” their money and focus would go to what…awareness/education? or research? prevention or parties? I’d like my money to go to research and prevention. Check out these charts to see where it really goes.

Just so you are aware.

~Desiderata

Monday's Random Thought...Thank you D.C.

****** "Does cancer enter us or do we, falling ill, enter the revelation of the universal cancer?" - Guido Ceronetti, Silence of the Body.

Black Hole Sucking Light...

Kindly...STOP Waving the Pink Ribbon in My Face!

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Dichotomy – splitting into two polarized groups; opposed by contradiction; differentiated between practice & theory

As I was pulling into the home driveway yesterday evening I got a call on my personal cell displaying an unfamiliar phone number. It had already been a confusing day. I had just arrived 10 hours prior from an emotionally charged 5-days in New England, and had spent the day dealing with myriad of “high octane” feelings. I thought when you “left your heart” in a distant geographical location the sensation would be that of a gaping hole in your chest wall. For me, since Sunday and my departure from N.E., my chest wall is exploding! I can’t catch my breath. Indeed, I almost feel like if I were able to I would erupt on the exhale.

But I digress. Back to the unexpected call and the unwitting caller...

A very chipper voice on the line greets me with “Hi Tamera! This is Janice. Janice? I am so excited to share with you that we will be shortly getting in our Pink-Ribbon Breast Cancer Survivor Bracelets and we are taking pre-orders. I didn’t want you to miss out!” Well OMG my arse! “Janice, darling (I have a BFF who uses “darling” to refer to nearly everyone. As a slang-word junkie I thought I would try it out myself in discreet situations – like when it would not be appropriate to verbally rip someone a new one). . .Janice. as a SURVIVOR let me tell you that although I so appreciate your thoughtfulness, not to mention your exuberance, I would not order, pre-order, purchase, gracefully accept, adorn myself or even consider giving as a gift to my nemesis a ghastly pink-ribbon doo-dad. If I wanted to broadcast my status, I would sew a yellow star to my clothes; embroider a scarlet C on my chest; or indulge in word-vomit all over a self-published blog. Obviously I have chosen the latter. Thank you very much." Janice came up with at least 17 different ways to sputter out an apology. Poor darling – I probably was a tad harsh.

For those of you who have traversed my path through the maze that is breast cancer, you may recall my vehement disdain for the Pink Ribbon Industry that has capitalized on raising awareness (like who has not heard of it) of breast cancer by merchandising, packaging, and marketing breast cancer as PINK & FLUFFY!!!!!!

It is not.

Realistic adjectives for breast cancer are: slice, dice, slash, burn, disfiguring, painful . . . in short not a heck of a lot of fun.

So, as the retail market enters their nauseating month of pink satiny ribbons, fluffy pink beanie babies, shiny bracelets and sport hats & Ts that color Breast Cancer Awareness Month, please remember “THINK BEFORE YOUR PINK” and check out bca.org

What's YOUR Breast Cancer IQ?

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This last week I noted that women all over Facebook were "flying their colors," ostensibly to heighten awareness of breast cancer. What woman (or man) on Facebook is NOT aware, on some level, as to the existence & insidious prevalence of breast cancer? The REAL challenge is testing your breast cancer IQ.

How many are aware that despite the collective million steps taken and the commensurate millions of $$$$ raised that the treatment of breast cancer has changed little in the last 50 years?

How many of us question whether the assertion that deaths related to breast cancer are on the decline have more to do with creative accounting than medical successes?

Who stops to think about the hypocrisy and insult...and downright greed displayed by the tens of thousands of corporate dollar donations to breast cancer foundations while these same corporations concurrently report millions of dollars of profit from their cancer-causing products?

How much do we truly know about the breast cancer INDUSTRY? And how much of what we unwittingly do supports, if not perpetuates the industry, not the cure?

I challenge each of you, before you walk, run, pink, or fly your colors, to first be aware of whose cause you are truly benefiting.

Awarenes

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October is Breast Cancer Awareness Month and the Pink Ribbons are flying!

What does that really mean ... AWARENESS???????

Before I was diagnosed with Invasive Lobular Carcinoma, I was aware of the prevalence of breast cancer. I knew it was a disease that struck mostly post menopausal women. I was aware that women who have family histories; who smoked; who took oral contraceptives for prolonged periods of time were more likely to be stricken with breast cancer. I was aware of mammograms and lumps and lumpectomies and mastectomies. I was aware of the existence of radiation and chemotherapy treatments.

I was aware of our local news station and its "Buddy Check 12" campaign. I was aware of the Pink Ribbon campaigns. I was aware that every October there was a hub-bub about the Susan B. Komen Race for the Cure. I was so aware that for the last 15 years I ran the Race for the Cure; ironically shaving off up to 8 minutes in my pace time each year. (As it turns out, I guess I wasn't running fast enough!!!!)

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.

For example . . .

I did not know there were myriad of causes of breast cancer - the majority being environmental
I did not know that women without genetic predispositions could get breast cancer
I did not know that women who did not live a high-risk lifestyle could develop breast cancer
I did not know that there were subsets to breast cancer (ductal, lobular, inflammatory and Paget's Disease)
I did not know that as a pre-menopausal woman in good health I could develop breast cancer
I did not know about sentinel node biopsies
I did not know about drainage tubes ("d-bombs")
I did not know about tram flaps; or that as a 100+/- lb person I am not a candidate for one (And thank the Creator for that one - not a procedure I would have wanted!)
I did not know about the long term effects of chemotherapy
I did not know about Adriamycin (aka "Red Devil")
I did not know about Tamoxifen (or that outside of the U.S. it is listed as a cancer-causing carcinogen)
I did not know about Herceptin and Aromatase
I did not know that the medical community treated pre-menopausal women differently than post menopausal women
I did not know about Oncotype DX and MammaPrint tests for chemo efficacy
I did not know about how a cancer is "staged"
I did not know that mammograms are not a reliable or effective way to early-detect Invasive Lobular Carcinoma
I did not know that a Vitamin D deficiency can be a contributing cause in the development of breast cancer
I did not know how key Vitamin C is in preventing the occurrence and recurrence of breast cancer
I did not know that a build up estrogen in the body is toxic.
I did not know that the only way the body effectively disposes of unneeded estrogen is through daily waste elimination
I did not know about E-cadherin and protein tests and saliva tests and hormonal balancing
I did not know about the vast discrepancies in how breast cancer is approached and treated in the U.S. as compared to Europe - and that stateside we are not on the higher road

and so it goes on, and on, and on . . . . AND

I did not know what an insidious and pervasive industry that breast cancer has generated in the U.S.

I did not know that the med-pros really do not have a "CURE" for breast cancer, but rather a "PROTOCOL" - that they are vociferous in the application of their established protocol; that the protocol has not changed much in 50 years; and that despite the protocol women are still dying - at times as a result of the protocol.

I did not know that even though 100s of millions are raised for research, awareness, marketing and merchandising that we are still no closer to a cure.

I did not know that some of the pharmaceutical companies that produce & distribute cancer treatment drugs consciously include cancer-causing carcinogens in the household products and foods we consume.


I did not know that I would need to become my own "lay expert" in order to earn a voice in the discussion regarding my own health and treatment.

October is Breast Cancer Awareness Month. And, I am a little more aware this October of 2009 than I have been in all my previous years. I am also excruciatingly aware that my new found knowledge and the continuing pursuit of knowledge has nothing to do with the flying of little Pink Ribbons!