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.


 

13 Facts You Should Be Aware Of During Breast Cancer Awareness Month

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"While there is no cure for metastatic breast cancer, some individuals are able to live longer with the disease. However, metastatic breast cancer remains a clinical challenge in the oncology community. October 13 places emphasis on the disease stressing the need for new, targeted treatments that will help prolong life." - William Gradishar, MD, Northwestern University Feinberg School of Medicine

13 Facts Everyone Should Know about Metastatic Breast Cancer ~ reprinted from the Metastatic Breast Cancer Network. mbcn.org

1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain. [ILC (invasive lobular carcinoma) is atypical in where it will metastasize first, e.g., lymphatic system, peritoneum, uterus]

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.

7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.

8. Young people DO get metastatic breast cancer.

X-ray of a woman with metastatic breast cancer
 in her bones

9. There are many different kinds of metastatic breast cancer.

10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.

11. Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of

their disease, some can live long and productive lives.

12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%. (Ahhh...this is where radiation onc got her figures when she played out for me her interpretation of the grim reaper. She gave me the cookie-cutter stats!)

13. October 13 is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www. mbcn.org.

"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

Getting a Handle on the Abbreviations & Acronyms

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My Own Little "AA" Pocket Reference

ALND = axillary lymph node dissection
ANS = Autonomic Nervous System (ANS)
BILAT = bilateral
BHRT = bioidentical hormonal replacement therapy
BRCA = breast cancer type 1 susceptibility protein
CAM = complimentary alternative medicine
CNS = central nervous system
CT = computerized tomography
DCA = dichloroacetate
DCIS = ductal carcinoma in-situ
DFS = disease-free survival
EGFR = epidermal growth factor receptor
ER = estrogen receptor
IDC = infiltrating (invasive) ductal carcinoma
ILC = infiltrating (invasive) lobular carcinoma
LCIS = lobular carcinoma in-situ
METS - metastatic
MRI =  magnetic resonance imaging
OS = overall survival
PetScan [PET] = positron emission tomography
PgR = progesterone receptor
SNLB = sentinel node biopsy

I will be adding to this list as I learn more during this next stage. This is just the basic primer for now.

"Barbie" (TM) Does Breast Cancer...REALLY! (or...I have found the Pink Beast's Lair)

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Introduction:

After meeting with surgical onc on Tuesday (8/16) and then the radiation onc on Wednesday (8/17), I was sent to the new "cutting edge" breast imaging center at John C. Lincoln Breast Health & Research Center. Before any slice 'n dicing can be agreed upon, the ladies (no, not the ones affixed to my upper frame, the oncs) wanted a breast MRI on both my ladies (yes, the ones affixed to my upper frame ... with crazy glue it sometimes seems). I agreed with this. Prudent, reasonable, no major radiation exposure. Let's do it. Well, that was where sanity ended and surreal began...

I have stumbled into the lair of the Pink Beast...and its name is Barbie!


Remember all the coveted Barbie (TM) play scenes. Barbie Condo; Barbie Salon; Barbie Beach Party; Barbie Corvette; Barbie does Botox...all of Barbie's unlimited fantasy lands? If Mattel were ever to decide that since Barbie is now part of the 50+ generation she should have some "real life" experiences; and, let's give her breast cancer (think Samantha a la Sex &the City); well ... they would not be able to create a better back drop than John C. Lincoln's Breast Health & Research Center.  

Grab your barf bags!

Glowing pink pony walls grab my attention as I enter the Imaging Center. There are three intake counters divided by milk chocolate floor to ceiling panels ... and bright glowing pink pony walls. Glowing because they are opaque and lit from within the walls. Accent lighting...got it.

Next my attention is drawn to the textured creamy accent wall behind the intake clerks. It looks like they took a 15' x 20' rectangle of whipped cream cheese, and with flicks and swirls created hibiscus flower shapes, then sealed it in motion with silicone. Gracefully scripted is ... YES ... pink lettering with the Center's moniker.

Retro-pink patient chairs act as sentinels in front of the intake clerks. At least the upholstered backs match the milk chocolate wall panels. The actual waiting area has retro-60's, milk-chocolate bucket leather chairs. Yippee.

The wall-to-wall carpet is dotted with small pink, white and milk-chocolate geometric squares. I am dizzy.

Cream (oh...let's just call it white chocolate) textured wall paper has muted gold sparkle squiggles running vertically floor to ceiling.

I look up. Barbie (TM) et al did not disappoint...a large, faux crystal, retro-60s chandelier hangs in the center of this Barbie (TM)  menagerie. Mood lighting, I suppose.

As I sit with the intake clerk, I cough and politely turn my head to the left. As I do, my attention is caught by the...um...a salon (?). An ante-chamber lined with hip to ceiling shelves of head wig stands. Sadly some are bald, but even their necks (?) are adorned with the signature pink & milk-chocolate colored scarves. Really ???




Mind you, this is just the waiting room. The secured MRI room holds it own. The linoleum floor immediately draws my eye with its large neapolitan-colored s/curve (though the pink is more bubble gum than strawberry in this room).  The wannabe Barbie (TM) interior designers went retro-modern in this area and opted for geometric plasticine lighting fixtures.

The changing room has a tiny airplane-sized sink with a ruffled milk-chocolate curtain hiding the plumbing. Privacy is provided by a heavy, embossed velvet curtain that hangs just beneath the 20' ceiling. Two lockers are available for clothing - clear but pink neon "A" and "B" identifies the different locked cubies. And, yes, there is a mini chandelier illuminating this 5' by 5' dressing cubicle. The soap is cotton-candy pink. I put on the provided quilted white robe, monogrammed with the proverbial pink ribbon that serves as a flagpole for the initials, "BH&RC".

I am taken to the injection site. Detail-oriented, and consistent, their decorator was. A large milk-chocolate - the same color as the s/curve on the linoleum, LazyBoy recliner awaits behind the pink and chocolate circles-on-cream curtain. Wow, I am now so prepped for my IV and the upcoming procedure..

I lay naked, save for the thong (now the barf bag is needed!) (BTW, the thong was blue) upon the baby-pink cushions that soften (barely) the divided well, designed to separate and suspend the ladies (yes, the affixed ones) for their close-up. I place my punim on the coordinating pink gauze that covers the face holder. Pink-tiles accent the otherwise cream-colored room. I start taking long cleansing breathes to bring both my pink-induced nausea and claustrophobia under control. Tech Michelle puts on the Stones for me (you rock Michelle!) and covers me with the robe and a baby-pink blanket. I get cold really easy. Ear plugs are put on (they are orange...ugh! fashion aux pas!) - not for the Stones, but for the deafening sounds the MRI is going to envelope me in for the next 40 minutes. Extra time is allotted because I have fake ladies. (Point of clarification...I am referring to the affixed ladies here.)


Epilogue:

One last breath. Arms are positioned over head (think a slovenly clad pink Superman). Eyes are closed...Mick, Keith, Ronnie, Charlie stay with me! Okay, slide me in... I am ready for my pink ribbon close up. Oh, and yes the outside of the Research Center was marked with a 5 foot pink ribbon sculpture. I know, because I am 5'1".

Post Script:

Oh, if only Michelle, my tech, had been bestowed with equal attention to detail. I explain the difference to her between ILC and DCIS. I explain the difference between expanders and permanent implants. I explain why she cannot take my blood pressure on my mastectomy side. Why do I need to explain? She shares that she has been doing MRIs for 10 years, but breast MRIs only one. She asks me health hx questions so she knows how to proceed. (Kudos for questions, really! Glad it is not her interpreting the films, however.)  And she is trying to expand her understanding. Learning should be a life-long pursuit. Even if it is done in the lair of the Pink Beast!

P.S.S.: I guess Barbie (TM) truly is the poster-girl for plastic boobies. And we wonder WHY there is no cure????  

P.S.S. - It just gets better...I swung by the John C. Lincoln Breast Health & Research Center today, to pick up the amended MRI report as well as the CD -- [ALWAYS GET A COPY OF THE ACTUAL IMAGES, NOT JUST THE WRITTEN REPORT, WHETHER IT BE CD OR FILM. WHEN YOU GO TO THAT NECESSARY SECOND OPINION (or even first opinion with the intial doc) MAKE SURE THE DOC LOOKS AT WHAT THE RADIOLOGIST LOOKED AT - MISTAKES CAN BE AND ARE MADE WHEN ONLY ONE SET OF EYES IS DOING THE INTREPRETATION.  But I digress..]

They handed me the envelope with the CD of the MRI, with a written amended report. The envelope was off-white with bubble gum pink border and writing...and...wait for it...a 4-view diagram of women's breasts, right and left, drawn in the same bubble bum [sic] pink color. The envelope size was 11x17. It did catch the eye of more than one in the crowded elevator as I made my way back to the parking garage.

Advancing the Vocab

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S-phase Fraction

Definition: (S faze FRAK-shun) A measure of the percentage of cells in a tumor that are in the phase of the cell cycle during which DNA is synthesized. The S-phase fraction may be used with the proliferative index to give a more complete understanding of how fast a tumor is growing. See mitosis.

Proliferative Index [Synonyms: proliferation index]

Definition: A measure of the number of cells in a tumor that are dividing (proliferating). May be used with the S-phase fraction to give a more complete understanding of how fast a tumor is growing.

Mitosis

Definition: (my-TOE-sis) The process of division (mitotic activity) of somatic cells in which each daughter cell receives the same amount of DNA as the parent cell.
(Phoenix5)

Phenotype

Definition: The appearance of an individual, which results from the interaction of the person's genetic makeup and his or her environment. By contrast, the genotype is merely the genetic constitution (genome) of an individual. For example, if a child's genotype includes the gene for osteogenesis imperfecta (brittle bone disease), minimal trauma can cause fractures. The gene is the genotype, and the brittle bones themselves are the phenotype. (Medicine.Net)

Diploid

Definition: noun - (Science: genetics, cell biology)
A cell or an organism consisting of two sets of chromosomes: usually, one set from the mother and another set from the father. In a diploid state the haploid number is doubled, thus, this condition is also known as 2n. adjective - Of or pertaining to a diploid, that is a cell or an organism with two sets of chromosomes.

Supplement - An example of a cell in a diploid state is a somatic cell. In humans, the somatic cells typically contain 46 chromosomes in contrast to human haploid gametes (egg and sperm cells) that have only 23 chromosomes.  (Biology-Online.org)

Angiogenesis:

 

noun. pl. an·gi·o·gen·e·ses

The formation of new blood vessels.

• The development of blood vessels is an essential step in tumor growth.
• A tumor cannot grow larger than a fraction of an inch without a blood supply.
• Tumor cells produce or cause other cells to produce growth factors that stimulate blood vessel formation.

Angiogenesis Inhibitors:

noun ~ A drug that blocks angiogenesis in cancerous tissue, thus interfering with tumor growth or metastasis.

• Some cells produce naturally occurring inhibitors of angiogenesis.
• These inhibitors are a focus of research as possible cancer treatments.
• Several anti-angiogenesis cancer drugs are already on the market and more are being tested.
• Angiogenesis inhibitors have two main benefits as a treatment:

1. They should be less toxic than conventional chemotherapy.
2. Because they target normal cells and not the cancer cells themselves, they should be less likely to lead to the selection of drug-resistant tumors.

Metastasis

• Metastasis is the process by which cancer cells spread to distant locations in the body.
• The majority of death associated with cancer is due to the metastasis of the original tumor cells.
• Metastasizing cancer cells must secrete a mixture of digestive enzymes in order to degrade barriers.
• Cancer cells may use the circulatory system to move to a suitable location to settle.
• Metastasis is a very inefficient process. Most cancer cells die once they leave the original tumor.

Lymphatic Metastasis

• Cancer can use the lymphatic system as well as the circulatory system to metastasize.
• The movement of cancer cells via the lymphatic system into lymph nodes is used in the detection of metastatic disease and tumor staging.

Enriching the Vocab

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Axillary lymph nodes glands in the armpit that fight harmful invaders such as bacteria. The presence of breast cancer cells in these lymph nodes generally indicates that cancer is more likely to spread elsewhere in the body.

Axillary lymph node dissection Surgical removal of lymph nodes in the armpit area

Invasive cancer Cancers that are capable of going beyond their site of origin and invading neighboring tissue

Lymph nodes Glands found throughout the body that fight harmful invaders such as bacteria. The presence of cancer cells in lymph nodes adjacent to a primary tumor generally indicates that cancer is more likely to spread elsewhere in the body.

Lymphedema Swelling of arm that can follow axillary node removal as part of breast cancer surgery. It can be temporary or permanent and occur immediately or any time after.

Metastasis Spread of cancer to an organ beyond the location in which it originated

Radiation therapy Treatment with high-energy rays (X-rays) to kill cancer cells

Out of the Mouths of Babes

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Given the opportunity, children - at whatever age, are truly amazing beings. My kids excel at amazing. Last night, my 19 year old and I are sitting on her bed and I ask so what are we doing...? She lowers her chin, looks me in the eye, and flatly states: You know I am really pissed off at you!

Yeah, I know, why?

Why have you not told me your are sick again!??

...the upshot, SHE reads my blog. Who knew?

I knew I had better talk to my 21 year old. (Yeah! She is home for the weekend.) My baby has come a long way.

I had a fabulous talk with both my girls, and I learned a very important lesson, again. NEVER UNDERESTIMATE YOUR CHILDREN'S ABILITY TO HANDLE LIFE.

I love them so very much.

Time Out for a Tantrum

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I know that positive thinking is the mantra.
I know that the universe sets the kibosh on us when we ooze out negative energy into its folds.
I know that I am a grown up and should be past the tantrum stage.
But…sometimes…you…just…have…to…SCREAM! And, maybe even STOMP a foot!

In fact, I feel that I NEED to have a TANTRUM so that I can break out of the malaise that is suffocating me right now.

I have not told anyone in my family  - aside from Husband, about the new information and the choices it is now demanding.

WHY no kids? Well, my 21 year old is making us crazy with her homework and “senior” apprehensions. My usual affectionate 19 year old has become quite moody this summer, and I find that at times instead of the sensation of hugs I am wiping off disdain and sarcasm from my shoulders. My 10 year old discovered how irrelevant parental units are to his immediate universe, with his first stint at sleep-away camp. To be candid, I am afraid of how the kids are going to react. At this round, at 10 years old my son understands disease more. I am afraid that my 19 year old will distance herself more from me if she knows. (She withdrew quite a bit during round #1 in 2009.) My 21 year old, she is volatile with her emotions, and…well, her pragmatism sometimes has a bite to it.

WHY no grown siblings? My eldest sister’s birthday was this week, and she is exhausted with moving my niece into new college housing, travelling across country and satisfying every one's "need" to spend time with her. My middle sister – well, I have not been able to see her in two years and I only get her for 20 waking hours this weekend. I would rather hear about her finally being able to fulfill her dream of going back to grad school. My younger brother – I have not seen him in 7 years. I know nothing about his life these days. Hi bro, long time no see, btw… no, not cool. Besides, these siblings did not come into my life till I was 11 years old, and at times I am still feeling my around with them in defining my “role in the club.” I don't want to lay something so heavy into the mix when my membership card has yet to be laminated.

WHY no parents? Mom is very emotional and I end up reverting back to my caretaker role with her – a throw back from childhood when she and I were the sole family unit. And, today is her birthday. Happy 74^th birthday Mom…btw…nope, not going to happen.

Am I a coward? Probably. Am I being selfish? Absolutely. Having to accept everyone’s reactions, questions, demeanors – makes it all too overwhelming. I find it hard enough accepting or dealing with myself most days.

SCREAMING into the void of the virtual world? Now that is safe.

Which conjures up a random thought: If you write and nobody reads, have you actually said anything?

Artemis' Silent Assault

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The arrow pierced through my chest wall unnoticed. A minor twinge that only slightly drew my attention away from the tasks at-hand. What literally dropped me to my knees was the unceremonious way in which the arrow, on its own volition, began to withdraw.

The head of the arrow must have been either larger than it initially appeared, jagged in its property, or dipped in some form of venom. Whatever the case, the pulsating burning throbs that gripped me just over my left pectoral muscle lit the entire area on fire. I tried to breathe deeply and send soothing energy to the area. To no avail. Each time I caught one deep cleansing breath the arrow tried to dislodge itself again – sending a barrage of concentrated fiery spasms.

I focused on the determination of the arrow, trying to discern its pace and pattern. I was trying to intellectualize the battle raging in my chest. As the spasms finally became less frequent and subside in intensity, I was able to unbutton the top of my blouse – curious to see if I could find the exit wound left by this unexpected assault and retreat. A prominent, raised vein was twitching across the upper pectoral, across the roundness of the breast, and was at least five inches in length.

I considered it for awhile. Reset the tempo of my breathing. Noted that the garage need a sweeping out from the prior days’ storms. Remembered, and then rescued dinner.

I did wonder, however, what I had done to piss-off Artemis?  

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...

“Living involves being exposed to pain every second—not necessarily as an insistent reality, but always as a possibility,”

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Pain is often referred to in philosophical discussions concerning the fundamental nature of human experience. The meanings and consequences of pain, and/or suffering, have been a topic of writing by philosophers and theologians alike. The experience of pain is, due to its seeming universality, a very good portal through which to view various diverse aspects of human life. (Wikipedia)

“Living involves being exposed to pain every second—not necessarily as an insistent reality, but always as a possibility,” writes Arne Vetlesen in A Philosophy of Pain, a thought-provoking look at an inevitable and essential aspect of the human condition. Here, Vetlesen addresses pain in many forms, including the pain inflicted during torture; the pain suffered in disease; the pain accompanying anxiety, grief, and depression; and the pain brought by violence. He examines the dual nature of pain: how we attempt to avoid it as much as possible in our daily lives, and yet conversely, we obtain a thrill from seeking it. Vetlesen’s analysis of pain is revealing, plumbing the very center of many of our most intense and complicated emotions. (Review - University of Chicago Press)

Pain is a noun (person, place or thing). Pain lurks in the shadows, but never quite leaves me. It has become an insidious, but loyal companion for the last year. Pain was first associated with the post-surgical discomfort from the mastectomy. As my body healed from the surgery I was subsequently assaulted with a different, and more persistent Pain, associated with the four rounds of reconstruction surgeries and procedures. Since I have more or less accepted the ladies “as is,” Pain has taken on a different manifestation.

Pain is with me daily now, but not continuous. Pain now appears to have taken up residence within my chest wall. The width of my chest is just 10 inches. Despite these close quarters, Pain is still a selfish lover. Pain strokes me hungrily underneath the implants –which are shoved below the pectoral muscles. It demands my attention by piercing through my sternum. At times it startles me. Taking me by surprise in a shooting moment. Other times, it snuggles up to me for the day, a dull reminder that my body has gone through a metamorphosis, and as a result must embrace a new paramour. And, like any passionate paramour, Pain at times seems to envelope my whole self, leaving me spent, trying to catch my breath.

Hey...I Benefited from the Health Care Bill !

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Over the last few weeks, I had been bantering with my Preferred PPO Health Care Plan about payment for my upcoming Breast MRI. I had been told that in order for the PPO to pay, they needed a current inconclusive mammogram. (I won't rehash the idiocy of the logic, in light of my present diagnosis and determinative tests that were needed to confirm same a year ago. For those gory details, refer to blog entry dated September 23, 2010.)

As we parried and thrusted on the issue of coverage, the Health Care Reform Bill took effect. Voila! This past Monday I was on the phone again for round four with the insurance company (the MRI was scheduled for the next day). Before I could get my vocal chords warmed up I was met with: "Ms. TC, we were just going to call you. We have looked into this matter and of course since it is medically/diagnostically necessary in light of your condition we will most certainly be covering the MRI. We are insurance administrators, it is not for us to determine what is medically necessary for you. If your oncologist has determined that the MRI is a medical necessity, then all she needs to do is put in the correct diagnostic code and it will be covered. Our apologies if there has been any confusion on this issue. Again, medical necessity is determined by your physician, not us."

WOW!!!! No kidding, no sarcasm...the above narrative is as true a retelling I can provide without a court reporter!  The only "change" or intervention that had occurred between my September 20 conversations with Blue Cross/Blue Shield and my September 27 conversation was the implementation of the Health Care Reform Bill. Yes, I had been doing my best B.O.W.* impersonation. I do not flatter myself with having been the cause of their change of heart (or profit ledger).

So there you go. Now if only they would have taken the blasted test for me it would have been a truly wonderful thing!

* B.O.W. = bitch on wheels

The Dichotomy of the Cancer Industry...the ongoing saga..................?

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

It is that time for me to get the full work up and see where I have been. The breast MRI. It gives the ONC a hindsight snapshot, allowing her to peer into what my boobies have been up to this past year.

The breast MRI is the annual gig. The PetScan is done bi-annually to see if those bugger cancer cells have decided to nest anywhere else in my ample frame (I am 5'1" ...almost; and 103 ...on a good day).

Here's the issue. I am being told (and by no means am I willing to take this as the definitive last word) is that my private PPO health care plan will most likely not pick up the tab on the MRI unless a mammogram demonstrates its indicated. That in itself would not be unreasonable ...except... (and yes, here it comes) IT HAS BEEN AND STILL IS MEDICALLY RECOGNIZED THAT MY CANCER (ILC) CANNOT BE DIAGNOSED WITH A MAMMOGRAM!

To add insult to the idiocy, a mammogram would unnecessarily expose me to radiation (and radiation is bad). The form pushers at the PPO, however, are saying that they need the "inconclusive" mammogram (again) prior to authorizing the MRI (note, this thinking does not take into consideration what I, as the patient, needs). The inanity (I am so liking the "i" words today) is that the MRI facility says that this is not uncommon (the paper pusher garbage that is) and they typically schedule the mammogram 1/2 hour before the MRI and then there is no delay, both are paid for, and I can be on my merry way...having been exposed to an unwarranted dose of radiation (that may ultimately result in...?) and costing the insurance company more $$$...all so the proverbial boxes can be checked.

If I cannot win this current pissing match regarding my OWN health care? Well, it appears that by insisting on doing what is medically required, and no more --- i.e., outside the parameters of protocol, the price tag for my independence would be $1800.00 out of pocket.

Happy Anniversary Baby!

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Truckin' like the doodah man
Once told me "Gotta play your hand
Sometimes the cards ain't worth a dime
If you don't lay them down"

Sometimes the lights all shining on me
Other times I can barely see
Lately it occurs to me
What a long strange trip it's been

One year ago today I was diagnosed with Invasive Lobular Carcinoma - Stage III (in truth the staging came in August after the mastectomy). One year of "survivorship" under my belt...only four to nine more years to surpass the prognosis! (How's that for a point spread!)

What a wild ride it has been these last 12 months. It is with utter amazement that I reflect back on the day my mortality was handed to me, with a soundtrack courtesy of YES reverberating through me. That day was a lifetime ago.

Today, if I am lucky, the wild ride will continue. The landscape may change, however.

What in the world ever became of sweet Jane?
She lost her sparkle you know she isn't the same
Living on reds and vitamin C and cocaine
All her friends can say is ain't it a shame

One of the realities that I discovered along this road is, that when facing your mortality it is not about "battling" a foe or trying to regain what was "normal" before. Rather, the ride is about developing a "new reality" that allows me to live with a chronic disease.

I cannot say that I have succeeded in my new reality. I don't know how "success" should be defined. What I can say is, that I have embraced the road I am on. It is a road beset with rabbit holes. It is also a road that is shrouded with many uncertainties. Yet, there can be clarity even in the darkness. At all times on the road I am cognizant of my long term objective -- the legacy, if you will. This knowledge is what helps keep me from getting too distracted by the "tea parties"* of Vitamin C & D and Calcium Glucarate.

So today, I take a breath. I embrace that I've been on the road for a year. And I note that I have more than earned the status of "survivor."



* No political connotation intended what-so-ever!

PSA - Treatment Concerns Regarding of DCIS

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Progress in Predicting Invasive Breast Cancer - Researchers Identify Biomarkers That May Help Decide Who Will Need Aggressive Treatment

By Charlene Laino
WebMD Health NewsReviewed by Laura J. Martin

MDApril 28, 2010 -- Doctors are a step closer to being able to predict which women with noninvasive breast tumors will go on to develop invasive breast cancer -- and therefore whether or not they need more aggressive treatment.

Researchers studied nearly 1,200 women with ductal carcinoma in situ (DCIS), a noninvasive and very early form of breast cancer confined to the milk ducts. They found that a combination of three tissue biomarkers was associated with a high risk of developing an invasive breast cancer with the potential to spread eight years later.

Also, DCIS that was diagnosed from a breast lump was linked to a greater risk of subsequent invasive cancer than DCIS that was diagnosed by mammography.
There's still a long way to go before the personalized approach to treatment is ready for prime time.

"But the study gets us closer to our goal of separating women with DCIS into risk groups, so as to avoid overtreatment of women with low-risk breast lesions and undertreatment of women with high-risk lesions," study researcher Karla Kerlikowske, MD, of University of California, San Francisco, tells WebMD.

The study was published online by the Journal of the National Cancer Institute.

Get Your Personalized Breast Cancer Treatment Report

Overtreatment of DCIS
Currently, overtreatment of DCIS, which will be diagnosed in over 47,000 women this year, is the big problem, according to Kerlikowske.

"Since there's currently no way to predict which women with DCIS will go on to develop invasive cancer, almost all are offered radiation after the lump is removed [lumpectomy] or mastectomy and sometimes hormone therapy. But our results suggest as many as 44% of women with DCIS may not require any treatment other than removal of the lump and can instead rely on active surveillance, or close monitoring," Kerlikowske says.

The close monitoring offers these women a safety net, she says. "If a tumor comes back, we can always give radiation then."

Radiation therapy not only carries a risk of side effects such as nausea, vomiting, and fatigue but also precludes irradiating the same area of the breast a second time, Kerlikowske says. "So you want to save it for when it is really needed," she says.

Predicting Invasive Breast Tumors
The study involved 1,162 women aged 40 and older who were diagnosed with DCIS and treated with lumpectomy alone between 1983 and 1994.

Overall, their eight-year risks of developing a subsequent DCIS or a subsequent invasive cancer were 11.6% and 11.1%, respectively.

When the researchers looked at women whose DCIS was diagnosed by feeling a lump, the eight-year risk of subsequent invasive cancer was substantially higher than average, 17.8%.

Then they looked at different combinations of biomarkers using tissue that had been stored for 329 of the women when they were first diagnosed with DCIS. These biomarkers include estrogen receptor, progesterone receptor, Ki67 antigen, p53, p16, epidermal growth factor receptor-2, and cyclooxygenase-2.

Predicting Invasive Breast Tumors continued...
The study showed that women who express high levels of three biomarkers -- p16, cyclooxygenase-2, and Ki67 -- also had a substantially higher-than-average eight-year risk of developing invasive cancer (27.3%).

The researchers stratified all 1,162 women into four risk groups. A total of 17.3% were in the lowest-risk group, with only a 4.1% chance of developing invasive cancer at eight years; 26.8% were in the next lowest risk group, with a 6.9 chance of developing invasive cancer at eight years. If the findings are validated, it is these two groups that could forgo treatment other than lumpectomy and active surveillance, Kerlikowske says.

A total of 27.6% of the women were in the high-risk group, with a nearly 20% chance of developing invasive cancer at eight years. These are the women who need more aggressive therapy with radiation and perhaps hormone therapy, she says.

Factors associated with a higher risk of having a subsequent ductal carcinoma in situ included having no cancer cells remain within 1 millimeter of the area from which the lump was removed and different combinations of biomarkers.

Unanswered Questions
Still, many questions remain.

For starters, about half of women who developed invasive cancer in the study didn't have the three biomarkers or DCIS diagnosed from a lump, so the researchers have to figure out what other factors are at play, Kerlikowske says.

Also, the approach has not been shown to actually extend lives.

Additionally, the study involved women who had undergone lumpectomy alone, which is no longer the standard of care, says Ramona Swaby, MD, a breast cancer specialist at Fox Chase Cancer Center in Philadelphia.

Recurrence rates are lower in women who also get radiation and if needed, hormone therapy, so it's important to see if the findings hold up in such women, she tells WebMD.

Craig Allred, MD, of Washington University School of Medicine in St. Louis, also calls for further study in an editorial accompanying the study. Still, "if validated, the results could optimize current therapy in certain settings: [withholding] radiation from women with low-risk DCIS, for example," he writes.

Several companies have expressed interest in helping to further develop and eventually market any tissue biomarker test, which will also need FDA approval, according to Kerlikowske.

Since it utilizes the same method and can be done at the same time doctors determine a tumor's hormone-receptor status, she doubts it will cost more than a few hundred dollars.

Funding for the research was provided by the National Cancer Institute and the California Breast Cancer Research Program.

My own personal journey is with Invasive Lobular Carcinoma (ILC) - Stage III. On my journey, however, I have had many women within my circle of contacts that have been diagnosed with Stage O DCIS. Many of whom have made tough personal choices regarding how they were going to address their diagnosis. To be candid, I have been concerned by many of the choices made. But, again, it is a personal choice and one that is never easily made. Part of my sincere hope for all women who have this early diagnosis is that they make their decisions not from visceral fear, but informed knowledge. My thoughts, prayers and hopes are with the friends, colleagues, and daughters that make up the 47,000.