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.


 

Sentinel Node Biopsies (SNB)...Unnecessary?

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Normally when I reprint an article or study for PSA purposes I don't include, within the text, my own editorial comments. In this case, with this study, I feel compelled to throw my "two cents" in ... smack dab in the middle of the reporting. My comments, editorials, opinions, etc are noted in italics. Read on...the "dogma is strong!"

Lymph Node Study Shakes Pillar of Breast Cancer Care
By DENISE GRADY (February 8, 2011 - NY Times)

A new study finds that many women with early breast cancer do not need a painful procedure that has long been routine: removal of cancerous lymph nodes from the armpit.

Medical diagram of SNB Prep

Part and parcel of my mastectomy back in August 2009 included what is termed: a sentinel node biopsy (SNB). This is where, as a matter of protocol, the surgical oncologist removes the first few nodes from the armpit, closest in proximity of the cancerous tumor. This is surgically accomplished after a lengthy prep of injecting the nodes - through the breast tissue, with radioactive material. The trick is then to keep the patient (moi) still for nearly an hour's time, to allow the radioactive material to settle into the nodes. It is this "settling" that gives the surgeon direction as to which nodes to remove. Once removed, and while the mastectomy is concurrently being done, a pathologist reviews these nodes and determines if any further excision is required.

The discovery turns standard medical practice on its head. Surgeons have been removing lymph nodes from under the arms of breast cancer patients for 100 years, believing it would prolong women’s lives by keeping the cancer from spreading or coming back.

One would think that after 100 years of post-surgical study that this "new" information / possibility / probability should have, could have been discovered / explored sooner. The latency of this revelation, in and of itself, is greatly disturbing. And there is the tiny little fact that DESPITE having had a SNB; and DESPITE the fact that I did have one positive node but current medical protocol was to ignore it as a "false positive" -- attributable to the SNB itself...nearly two (2) years to the day it is confirmed that my breast cancer has indeed spread into my lymphatic system. What does this mean? Well, because of the active lymph nodes being so close to the primary tumor site, there is a very high probability that distant organs are affected. The challenge with ILC is, however, that it is difficult to early detect any potentially affected organ because until the invasive forms into a detectable mass. Which is my cancer hx thus far.

Now, researchers report that for women who meet certain criteria — about 20 percent of patients, or 40,000 women a year in the United States — taking out cancerous nodes has no advantage. It does not change the treatment plan, improve survival or make the cancer less likely to recur. And it can cause complications like infection and lymphedema, a chronic swelling in the arm that ranges from mild to disabling.

Example of lymphedema
patient with a medical sleeve

I was very fortunate. Aside from some initial post-surgical swelling, I did not develop lymphedema -- although my med-pro team was fully anticipating I would. Because of the SNB, however, I need to ensure that during any sort of medical examination (routine or otherwise) my blood pressure is not taken on my left side -- the SNB site. Reason: lymphedema can occur at any time by this simple routine exam as a result of having had an SNB. It is notable that even when I am being examined by a member of my "cancer team" I still have to remind each and every one of them -- each and every time, not to measure my blood pressure on my left-side. Inevitably, and strangely, they all gravitate to the left.

Removing the cancerous lymph nodes proved unnecessary because the women in the study had chemotherapy and radiation, which probably wiped out any disease in the nodes, the researchers said. Those treatments are now standard for women with breast cancer in the lymph nodes, based on the realization that once the disease reaches the nodes, it has the potential to spread to vital organs and cannot be eliminated by surgery alone.

This aspect of the study particularly interests me for two reasons: (1) One of out of the three nodes that I had removed did test positive for cancer cells. I was told, however, that because of a then-recent study in 2009, protocol had changed and advised that there was a strong probability that cancer cells are unintentionally injected into the nodes as a result of the surgical procedure itself. As such, since it was my third node that was positive, the "protocol" was "to do nothing" further, surgically. (2) That said, anyone following my journey will know that I opted out of both chemo and radiation -- despite the heavy-handed pressure by my "cancer team" to aggressively pursue both. I opted out, because of: (a) the disparity within the global medical community as to the efficacy of chemo and radiation in prolonging life after cancer; (b) my own personal "efficacy" test (Oncotype DX) that concluded I would only have up to a 4% margin of efficacy if I underwent chemo; and (c) not finding one medical professional who themselves would subject themselves to radiation treatment (though none of them would "publicly" admit these personal views).

Experts say that the new findings, combined with similar ones from earlier studies, should change medical practice for many patients. Some centers have already acted on the new information. Memorial Sloan-Kettering Cancer Center in Manhattan changed its practice in September, because doctors knew the study results before they were published. But more widespread change may take time, experts say, because the belief in removing nodes is so deeply ingrained.

“This is such a radical change in thought that it’s been hard for many people to get their heads around it,” said Dr. Monica Morrow, chief of the breast service at Sloan-Kettering and an author of the study, which is being published Wednesday in The Journal of the American Medical Association. The National Cancer Institute paid for the study.

This again begs my initial question -- why did this "radical change" take 100 years to publicly disseminate.

Doctors and patients alike find it easy to accept more cancer treatment on the basis of a study, Dr. Morrow said, but get scared when the data favor less treatment.

The above statement makes me ponder just how many of us "patients" they polled. Sadly, I find that many of my fellow breast cancer-club member's have made far-reaching medical decisions solely based on their initial fears. On the other hand, I have also found, and continue to find, a growing number of club members who share my belief that decisions can only be made after extensive research and questioning. And, after extensive research and questioning many of us discover that the "science" behind adjuvant treatment does not play out in our favor; so we opt-out.

The new findings are part of a trend to move away from radical surgery for breast cancer. Rates of mastectomy, removal of the whole breast, began declining in the 1980s after studies found that for many patients, survival rates after lumpectomy and radiation were just as good as those after mastectomy.

The trend reflects an evolving understanding of breast cancer. In decades past, there was a belief that surgery could “get it all” — eradicate the cancer before it could spread to organs and bones. But research has found that breast cancer can begin to spread early, even when tumors are small, leaving microscopic traces of the disease after surgery.

Sentinel node biopsy incision

To the credit of my surgical oncologist (Lise Walker) she was not so arrogant as to believe that surgery could "get it all."  Indeed, she and I had a spirited discussion of the known microscopic cancer cells that were left in my body post-mastectomy. FYI - I did not have the option of a lumpectomy. My tumor was 6.2 cm - i.e., of such expanse that it spread throughout my entire left breast. BTW - it was in Lise Walker's office that I first discovered the book: "What Your Doctor Won't Tell You About Breast Cancer."

The modern approach is to cut out obvious tumors — because lumps big enough to detect may be too dense for drugs and radiation to destroy — and to use radiation and chemotherapy to wipe out microscopic disease in other places.

Modern? Cut, slash and burn has been the protocol for over 50+ years.

But doctors have continued to think that even microscopic disease in the lymph nodes should be cut out to improve the odds of survival. And until recently, they counted cancerous lymph nodes to gauge the severity of the disease and choose chemotherapy. But now the number is not so often used to determine drug treatment, doctors say. What matters more is whether the disease has reached any nodes at all. If any are positive, the disease could become deadly. Chemotherapy is recommended, and the drugs are the same, no matter how many nodes are involved.

This latter sentence is frightening. Not because it causes me to reflect on my choice not to undergo adjuvant treatment. But because it is these types of statements that were used to try and bully me into acquiescing to chemo and radiation -- despite the undisputed medical conclusion that I would not benefit from chemo. It is these types of statements that plant fear into persons dealing with breast cancer and emotionally and mentally inhibits them from becoming informed patients.

Injection of the the radioactive material
in prep for the node biopsy

"...and the drugs are the same, no matter how many nodes are involved." This admission also sends chills down my spine. It should be a big ol' red flag that in light of it taking the med-pros 100 years to publicly declare this "nodal" revelation, that the med-pros are still unwilling, as a community, to reveal that the "standard protocol" for treating breast cancer reached a plateau decades ago. Refer back to my "audience with the Great Oz back in September, 2009."

The new results do not apply to all patients, only to women whose disease and treatment meet the criteria in the study.

The tumors were early, at clinical stage T1 or T2, meaning less than two inches across. Biopsies of one or two armpit nodes had found cancer, but the nodes were not enlarged enough to be felt during an exam, and the cancer had not spread anywhere else. The women had lumpectomies, and most also had radiation to the entire breast, and chemotherapy or hormone-blocking drugs, or both.

The study, at 115 medical centers, included 891 patients. Their median age was in the mid-50s, and they were followed for a median of 6.3 years.

After the initial node biopsy, the women were assigned at random to have 10 or more additional nodes removed, or to leave the nodes alone. In 27 percent of the women who had additional nodes removed, those nodes were cancerous. But over time, the two groups had no difference in survival: more than 90 percent survived at least five years. Recurrence rates in the armpit were also similar, less than 1 percent. If breast cancer is going to recur under the arm, it tends to do so early, so the follow-up period was long enough, the researchers said.

One potential weakness in the study is that there was not complete follow-up information on 166 women, about equal numbers from each group. The researchers said that did not affect the results. A statistician who was not part of the study said the missing information should have been discussed further, but probably did not have an important impact.

It is not known whether the findings also apply to women who do not have radiation and chemotherapy, or to those who have only part of the breast irradiated. Nor is it known whether the findings could be applied to other types of cancer.

The results mean that women like those in the study will still have to have at least one lymph node removed, to look for cancer and decide whether they will need more treatment. But taking out just one or a few nodes should be enough.

Dr. Armando E. Giuliano, the lead author of the study and the chief of surgical oncology at the John Wayne Cancer Institute at St. John’s Health Center in Santa Monica, Calif., said: “It shouldn’t come as a big surprise, but it will. It’s hard for us as surgeons and medical oncologists and radiation oncologists to accept that you don’t have to remove the nodes in the armpit.”

Dr. Grant W. Carlson, a professor of surgery at the Winship Cancer Institute at Emory University, and the author of an editorial accompanying the study, said that by routinely taking out many nodes, “I have a feeling we’ve been doing a lot of harm.”

Indeed, women in the study who had the nodes taken out were far more likely (70 percent versus 25 percent) to have complications like infections, abnormal sensations and fluid collecting in the armpit. They were also more likely to have lymphedema.

I can attest to the abnormal sensations (euphemism for pain), that continue each and every day, to this day, since the SNB and mastectomy in August 2009.

But Dr. Carlson said that some of his colleagues, even after hearing the new study results, still thought the nodes should be removed.

“The dogma is strong,” he said. “It’s a little frustrating.” 

This understated sentiment can be broadly applied in all aspects of the breast cancer industry.

Eventually, he said, genetic testing of breast tumors might be enough to determine the need for treatment, and eliminate the need for many node biopsies.

BRCA Genes I & II Mutation

Had extensive genetic testing prior to the SNB and mastectomy. Did not alter the course of treatment adamantly lobbied for by the "cancer team."

Two other breast surgeons not involved with the study said they would take it seriously.

Dr. Elisa R. Port, the chief of breast surgery at Mount Sinai Medical Center in Manhattan, said: “It’s a big deal in the world of breast cancer. It’s definitely practice-changing.”

Dr. Alison Estabrook, the chief of the comprehensive breast center at St. Luke’s-Roosevelt hospital in New York said surgeons had long been awaiting the results.

“In the past, surgeons thought our role was to get out all the cancer,” Dr. Estabrook said. “Now he’s saying we don’t really have to do that.”

But both Dr. Estabrook and Dr. Port said they would still have to make judgment calls during surgery and remove lymph nodes that looked or felt suspicious.

The new research grew out of efforts in the 1990s to minimize lymph node surgery in the armpit, called axillary dissection. Surgeons developed a technique called sentinel node biopsy, in which they injected a dye into the breast and then removed just one or a few nodes that the dye reached first, on the theory that if the tumor was spreading, cancer cells would show up in those nodes. If there was no cancer, no more nodes were taken. But if there were cancer cells, the surgeon would cut out more nodes.

Although the technique spared many women, many others with positive nodes still had extensive cutting in the armpit, and suffered from side effects.

A lymphedema patient, without
the medical sleeve

“Women really dread the axillary dissection,” Dr. Giuliano said. “They fear lymphedema. There’s numbness, shoulder pain, and some have limitation of motion. There are a fair number of serious complications. Women know it.”

After armpit surgery, 20 percent to 30 percent of women develop lymphedema, Dr. Port said, and radiation may increase the rate to 40 percent to 50 percent. Physical therapy can help, but there is no cure.

The complications — and the fact that there was no proof that removing the nodes prolonged survival — inspired Dr. Giuliano to compare women with and without axillary dissection. Some doctors objected. They were so sure cancerous nodes had to come out that they said the study was unethical and would endanger women.

“Some prominent institutions wouldn’t even take part in it,” Dr. Giuliano said, though he declined to name them. “They’re very supportive now. We don’t want to hurt their feelings. They’ve seen the light.”

Artemis' Stealth

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. . .is not to be underestimated. Her strikes are random. Unexpected. Her aim is impeccable. Depending on her ire, it can be a barrage of excruciating proportions. Or, there are times that her presence is just a whisper, that teases like an ill-intended promise. A promise served hot and always with debilitating resolve.

“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.

A Case of Mental Courange...(Reprint of NY OpEd)

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August 23, 2010
A Case of Mental Courage
By DAVID BROOKS


In 1811, the popular novelist Fanny Burney learned she had breast cancer and underwent a mastectomy without anesthesia. She lay down on an old mattress, and a piece of thin linen was placed over her face, allowing her to make out the movements of the surgeons above her.

“I felt the instrument — describing a curve — cutting against the grain, if I may so say, while the flesh resisted in a manner so forcible as to oppose & tire the hand of the operator who was forced to change from the right to the left,” she wrote later.

“I began a scream that lasted intermittingly during the whole time of the incision — & I almost marvel that it rings not in my ears still.” The surgeon removed most of the breast but then had to go in a few more times to complete the work: “I then felt the Knife rackling against the breast bone — scraping it! This performed while I yet remained in utterly speechless torture.”

The operation was ghastly, but Burney’s real heroism came later. She could have simply put the horror behind her, but instead she resolved to write down everything that had happened. This proved horrifically painful. “Not for days, not for weeks, but for months I could not speak of this terrible business without nearly again going through it!” Six months after the operation she finally began to write her account.

It took her three months to put down a few thousand words. She suffered headaches as she picked up her pen and began remembering. “I dare not revise, nor read, the recollection is still so painful,” she confessed. But she did complete it. She seems to have regarded the exercise as a sort of mental boot camp — an arduous but necessary ordeal if she hoped to be a person of character and courage.

Burney’s struggle reminds one that character is not only moral, it is also mental. Heroism exists not only on the battlefield or in public but also inside the head, in the ability to face unpleasant thoughts.

She lived at a time when people were more conscious of the fallen nature of men and women. People were held to be inherently sinful, and to be a decent person one had to struggle against one’s weakness.

In the mental sphere, this meant conquering mental laziness with arduous and sometimes numbingly boring lessons. It meant conquering frivolity by sitting through earnest sermons and speeches. It meant conquering self- approval by staring straight at what was painful.

This emphasis on mental character lasted for a time, but it has abated. There’s less talk of sin and frailty these days. Capitalism has also undermined this ethos. In the media competition for eyeballs, everyone is rewarded for producing enjoyable and affirming content. Output is measured by ratings and page views, so much of the media, and even the academy, is more geared toward pleasuring consumers, not putting them on some arduous character-building regime.

In this atmosphere, we’re all less conscious of our severe mental shortcomings and less inclined to be skeptical of our own opinions. Occasionally you surf around the Web and find someone who takes mental limitations seriously. For example, Charlie Munger of Berkshire Hathaway once gave a speech called “The Psychology of Human Misjudgment.” He and others list our natural weaknesses: We have confirmation bias; we pick out evidence that supports our views. We are cognitive misers; we try to think as little as possible. We are herd thinkers and conform our perceptions to fit in with the group.

But, in general, the culture places less emphasis on the need to struggle against one’s own mental feebleness. Today’s culture is better in most ways, but in this way it is worse.

The ensuing mental flabbiness is most evident in politics. Many conservatives declare that Barack Obama is a Muslim because it feels so good to say so. Many liberals would never ask themselves why they were so wrong about the surge in Iraq while George Bush was so right. The question is too uncomfortable.

There’s a seller’s market in ideologies that gives people a chance to feel victimized. There’s a rigidity to political debate. Issues like tax cuts and the size of government, which should be shaped by circumstances (often it’s good to cut taxes; sometimes it’s necessary to raise them), are now treated as inflexible tests of tribal purity.

To use a fancy word, there’s a metacognition deficit. Very few in public life habitually step back and think about the weakness in their own thinking and what they should do to compensate. A few people I interview do this regularly (in fact, Larry Summers is one). But it is rare. The rigors of combat discourage it.

Of the problems that afflict the country, this is the underlying one.

Thank you Diane ! My physiological reaction to reading this piece - in its entirety, is very interesting on many levels. I cringed. I felt ill (weakened and woozy; my ears started ringing; my heart rate increased dramatically). This definitely hit a chord...or should I say...bone.xxoo

Oops! Where did it Go????

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Have you heard the joke that begins: "...a funny thing happened to me..." ? Well, the joke is on me! Four weeks ago I went through a third round of reconstructive surgery. Part of this round included a nipple grafting. (And yes, it is as icky as it sounds. A real slice, dice, and sew job!)

On Monday, while getting dressed for court I noticed that my coveted little protrusion was gone. I went to the magnifying mirror and closely inspected the area. Yup. That's right Alice, me nipple was gone! And, yes, I did say out loud to myself, while standing in the middle of the bathroom..."CRAP, me nipple is gone." And it was said with an affected East End accent. Then I began giggling uncontrollably. It has taken me days to stop.

Indeed, the only thing that saved me from a particularly exhausting day on the criminal bench was knowing what was missing underneath the black robe!

Well, the joke continued. The next day when I stepped into my shower I saw something kinda funky in the corner. I inquisitively leaned down to inspect further. EUREKA! There IT was. In all ITS gruesome glory.

I unceremoniously rinsed IT down the closest rabbit hole -- the shower drain. Its okay, IT's biodegradable.

More than ever, my thoughts are turning back to the Lotus. And, if I want a nipple that bad, I suppose that I can always buy a truly detachable one from the neighborhood "Adult Shoppe" or Auto Zone*.

The Second Unveiling: The Truth & Consequences About Reconstruction

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The look on my husband's face and the unintentional, yet critical, queries threw me for a loop. I thought boob jobs did not create so much scarring! Why are you so cut-up?

I was not angry or hurt by his spontaneous utterances. They just echoed the incredulous feelings I had been having since December 11 (the most current "slice 'n dice" day). Its not that I did not have an intellectual appreciation of what was going to happen to me. Unlike the amputation (aka mastectomy) it would seem that I was not as prepared as I thought for what the reconstruction and masteopexy was going to truly look like, post-surgery. Yes, the reconstructive surgeon had showed me his book of before and after pictures. And, yes, I did study them. But studying that surreal "coffee table" book was like looking at a police mug-shot book -- blurs of unfamiliar images that don't look like they belong in your personal universe.

Upon reflection, it seems that I had, and still am, spending so much time researching and analyzing my cancer, optional paths for survival, and adjuvant treatments to forestall the recurrence of my cancer, that when it came to the reconstructive portion of my journey I had done just enough research to assure myself that I was in good hands with the surgeon. Then I placed my ladies (literally and figuratively) in his hands.

To respond (versus emotionally react) to my husband's own visceral reaction and questions to seeing me completely unveiled (sans gauze and surgical steri-srips), I went back and got the hard facts for him. . . .

Reconstructive Surgery

Immediately after the full mastectomy of the left breast, the reconstructive surgeon began the process of a two-stage reconstruction (sometimes referred to as "two-stage delayed" reconstruction). After the surgical oncologist finished her amputation (with no skin or nipple sparring), and while I was still under general anesthesia, the reconstructive surgeon implanted a tissue expander. A tissue expander is like a balloon that is put under the skin and chest muscle. (And, no, there is no sugar-coating the pain and discomfort the expander can cause under the chest muscle.)

Every 6-8 weeks thereafter, through a tiny valve under the skin, the reconstructive surgeon injected (with a 2-inch needle) a salt-water solution to fill the expander. The valve was always located with what I thought of as a mini-divining tool. My reconstructive surgeon fondly called it a stud finder!? When the magnet stood straight up, EUREKA, the valve opening was found! I was expanded 3 times (I was aiming for a B+ cup-size).

After the skin over the breast area had stretched enough, the second slice n' dice was done to remove the expander and put in the permanent implant on the mastectomy side. Initially it was only going to be a 2 cm incision for the removal and replacement, but due to my petite size the reconstructive surgeon had to cut about 3.5 inches along the breast, coming in from the armpit. Luckily, this was all done along the existing mastectomy incision. As a result, however, that area continues -- even after 5 weeks post-op, to have sharp pulls and stabs of pain.

In the Interest of Beauty?????

In the interest of aesthetic symmetry (which in retrospect, I am having difficulty reconciling this goal with the visual scarring and painful sensory onslaught I am currently experiencing), the surviving breast underwent a mastopexy.

This was done utilizing the anchor incision technique. An anchor incision is made around the perimeter of the areola, vertically down from the areola to the breast crease, and horizontally along the breast crease. (Think, a nautical anchor shape.) This technique produces the most scarring, and is actually a highly invasive series of incisions used in many cosmetic breast surgery procedures.

While the technique creates a surgical wound comprised of a circular top section, a vertical mid section and a horizontal crescent shaped bottom section, the placement of these incisions allows the reshaping and re-sculpting of the entire breast mound, which is necessary during a mastopexy procedures.

Apparently an anchor incision it is still one of the most widely used and reliable methods of achieving excellent breast lift results to compliment a mastectomy reconstruction. (Yipee skipee!)


Everything comes with a price-tag. Like any surgical wound, the anchor shaped incision carries certain risks and can cause several potential complications. The large size and prominent placement of the incisions make visible scarring a strong possibility. Hence, husband's reaction. Most women who undergo this technique will have permanent scars which will be noticeable on the breast and/or areola. (They do say that the scars start to loose their punk-red coloring after 1-2 years...good thing I am working on a 10-year survival plan!)

Additionally, the anatomical positioning of the incisions also might cause damage to the sensitive neurological, vascular and glandular tissues of the breast. This type of injury (the medical professions descriptive word, not mine) can cause temporary or permanent sensory perception issues in the nipple or throughout the breast. Interestingly, my issue at this time is the sensory assault, not the long-term potential degeneration -- the burning around the incisions, the stabbing pains through the sternum and the electrical-like shocks that emanate from the chest wall (this latter pain good, means nerves are trying to find their way back "home").

. . . . then there's the 3d unveiling to come. . . .

You can decide if you want to have your nipple and the dark area around the nipple (areola) reconstructed. Nipple and areola reconstructions are optional and usually the final phase of breast reconstruction. I've opted. (In for a penny, in for a pound...so why not in for a boobie, in for a nipple!) This is a separate surgery - again done in the interest of the self-propelling concept of symmetrical beauty. It is usually done after the new breast has had time to heal from the second round of reconstruction (about 3 to 4 months).

Tissue used to rebuild the nipple and areola will be taken from my body, either from the newly created breast, opposite nipple (except there's not much there to share), ear, eyelid, groin, upper inner thigh, or buttocks -- where-ever I have it to spare. Six to eight weeks after the nipple is created I will get with the tattoo-artist to match the color of the nipple of the other breast to create an areola facsimile. Truth be told, I have threatened to have a lotus flower done in place of the traditional areola. Husband had a visceral reaction to that statement too! (Hee Hee!)

With that last reaction, I threatened to have the eye of Sauron tattood instead!

"Kenzu" Knives Make a Comeback!

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Another slice 'n dice session with the surgeon this past Friday. This time it involved both "ladies." And the only thing pithy that comes to mind is OUCH! But this time, I brought it on myself.

They tell you in the user-friendly post-op literature that "come the second day after surgery the 'discomfort' [euphemism for PAIN] will be such that you may be rethinking your decision to have opted for reconstructive surgery. Do not worry, this feeling will pass." Well, they were almost on the money.

I was actually rethinking this whole decision two weeks prior to offering myself up to the surgical slab. And I was DEFINITELY having second thoughts as I was dry-heaving for a solid 36 hours after surgery (a parting gift from my kindly anesthesiologist).

In the days and weeks leading up to cutting day, the image of the one-breasted Amazon was looking more and more attractive. And it wasn't just about nerves. To be truthful, I was not looking forward to ye ole surgical experience again. There is no upside to surgery, aside from compelled convalescence (a Type A+++ lawyer's definition of vacation). More so, it was the realization that my body will never truly be the same again. I do not mean "the same" as in my body "is not the same as before having 3 kids"; or my body "is not the same because the irony of age has grabbed ahold." I am talking about, not being the same because of a permanent premeditated alteration. I don't know how the "It People" so easily venture down the cosmetic surgery route time and time again (Cher? Demi? Joan?)-- I find the whole concept disturbing on too many levels.

When preparing for the total mastectomy, people tried to discuss with me the "mourning" I would feel for the loss of my breast. I never felt that loss. Frankly, I thought the whole "mourning the cancerous boobie thing" ridiculous. My breast had to go because it had been perverted with a malignancy caused by the environment in which we live. That amputation was just another decision on life's path. The perversion had to be excised if I wanted to be at my 17 year old daughter's high school graduation. No-brainer.

This time, the surgical decision was a decision made out of vanity. My vanity. And that is disturbing to me. I could have easily embraced my Amazonian persona. I could have gotten a really cool tattoo -- a la Phoenix rising from the ashes sort of thing. Though, I have been threatening to get a lotus tat instead of an areola tat all along.

Instead, I sit here second-guessing the foundation of my confidence. I should be doing "life" things, like planning a ski trip or training for the P.F.Chang Rock n Roll Marathon. Or figuring out to have a Cosmopolitan with an old new-found friend. Instead, I bought into the Cosmo version of beauty. Somebody should have slapped me - hard.

I sit here tonight feeling like maybe that a greater crime than having my body betray me with cancer, is me betraying my body with a conventional delusion of "beauty."

How morbidly hypocritical.

Attack of the Prosthetic or "What the Docs Didn't Tell Me...Again"

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When you go through the mastectomy and reconstructive process the med-pros, if you asked them, would genuinely tell you that they diligently inform patients of the potential risks, healing times, the care of the wound and drainage tubes (a.k.a. d-bombs for my few but loyal blog followers), medications, numbness and expected down time. What they don't inform of is how it will all feel! And I am not talking about the emotional adjustment of having your body look like Igor took knitting lessons from the Monster!

What I am speaking about are the bizarre sensations. The queer aches. The very wrong pains.

My surgeons did not truly share what the daily oddities would be - despite providing me with a personalized 12-page booklet. They didn't really prepare me for the texture of the of the training boo-bee. That it would feel like an unripened grapefruit trying endlessly to dislodge itself, a la Sigourney Weaver and Alien.

They did not share the fascinating little tidbit that if any seam or edge ... of any kind or material ... presses against the iron grapefruit for more than 2 minutes a deep impression is left. Very useful if you are imprinting keys. But a bit disconcerting if you are trying to grow (?) a new breast.

I do admit that they told me the breast area was going to be numb. What they didn't share was that it was the kind of numb sensation you feel when your foot falls asleep -- that heavy, prickly, tingling feeling. In this situation, however, it n-e-v-e-r goes away no matter how much you stomp.

Nor did they even whisper about what I fondly refer to as the "spike attack." Think rolling-pin that is actually more medieval mace. If I shift my arm or shoulder too quickly, or instinctively reach to catch something, the iron grapefruit that was planted in my left chest wall jerkily rolls its protestations against every nerve, bone and fiber it can reach.

I will give Med-Pros credit, they do encourage "creativity" when trying to camouflage the lopsidedness of "the ladies." Even being complicitous in the creative process by prescribing varied padded objects, courtesy of the retail mastectomy fashionistas. And let me tell you, we are not talking tissue or gym-sock stuffings Sandra Dee...!

Which leads me to mention that I was not forewarned that the surgical scar that runs horizontally from pit to sternum screams in burning agony if the compression bra is pulled too tight over it. An unavoidable and unfortunate situation if you are trying to artificially balance the "ski-jump" that passes for a bustline. And this fire does not extinguish.

For now, I have learned to embrace the ski-jump and wear patterned and textured tops. Though, I must admit I am perversely yearning for the inevitable awkward scene in the grocery store when a little kid points and shouts loudly: "MOMMY! that lady has a hump on her front!"

The Women Warriors of the Amazon

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The word Amazon itself has some connotation with breasts.

In the picture:  The Amazons were a mythical race of warrior women renowned for their skills in archery and horsemanship. This marble statue depicting a wounded Amazon is a Roman copy of a Greek bronze original dated around 450–425 B.C. The original bronze may have stood in the sanctuary of Artemis at Ephesus on the coast of Asia Minor, where the Amazons had legendary and cultic connections with the goddess.

Here, the mythical warrior woman has been stripped of her weapons and horse, and wounded under her right breast. She wears a short, sleeveless chiton unfastened at one shoulder and belted at the waist with a makeshift bit of bridle from her horse. Despite her plight, this Amazon shows no sign of pain or fatigue. She gently leans on the pillar at her left and rests her right arm gracefully on her head in a gesture often used to denote sleep or death.

(Picture & description from the NY Metropolitan Museum)

Maybe I was born in the wrong century. I have a fascination and myself have indulged in ancient forms of combat (Tae Kwon Do; Kykoshin; Karate; Archery; Fencing) as well as equestrian pursuits. I aspire to be stoic and graceful; to show no sign of pain or fatigue, even when I incur the piercing wrath of Artemis. Regrettably, my slight case of dyslexia has always given me challenge when trying to discern my "left" from my "right." It afflicts me yet again. Instead of amputating my right breast, it was the left I allowed to be lobbed-off. No wonder I have so peeved the goddess.

Field Trip, Torture and Vitamin C

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Yowza! My first field trip outside since the "big whack." Okay, it was to the naturopathic oncologist, but it was highlighted by some great stuff.

First, the purpose of the trip was to offer up my already assaulted veins for an I.V. Vitamin C treatment laced with Traumeel. (Google that one!)

Next, one of the physicians in the practice played "re-wrap the 'mummy'" (ah, an old b'nai mitzah reception game!) several times. (Wearing gauze bandages reminds me of trying to wear tube tops in the '70s...I had nothing to hold the darn things up then, and I now I no longer have anything to hold them up now!)

I also discovered a commonality with the males of our species I never thought possible. My empathy was triggered as I desperately struggled all day to discreetly camouflage my two "drainage bombs." (Recall back to high school gym class and that guy who always wore boxer shorts underneath his too short gym-shorts?)

If the excitement of all of the above was not enough, I had the added pleasure of exposing...I mean sharing...all of this with a dear friend (read: indentured chauffeur-ette). Yes, Steph got to share in the mummy wrap, bombs, needles and the memory of pubescent jewels. Payback...I mean gratitude...can be a bitch, however, and my dear Steph leads the class.

She insisted that we stop for a quick nosh on the way back home. The excitement of the day obviously gave her an appetite. Sitting in the Scottsdale icon, The Sugar Bowl, she sinfully indulged in a four scooper bowl of Turkish Coffee ice cream, slowly licking every caramel droplet from the spoon. Only to then chase this decadence by slurping a diet cherry cola as she smirked in concerned fashion in my direction. I, being lactose-intolerant, watched longingly as I gagged down my 1/2 tuna melt (sans frommage). All the while drooling with envy into my ill-fitting "tube top," wondering if my "d-bombs" were peaking out from my proverbial "boxer shorts!"

All in all, a pretty great day!

Hurry Up and Wait

****** Okay. The process is beginning.

I am sitting in my pre-op bed. Oh yea...it is SWEET, you can get WIFI access in pre-op!!! They have me draped in this exaggerated vacuum cleaner bag that comes complete with hose openings for the hot-air tube to keep me warm. "Ground control to Major Tom..."

I was admitted at 8 a.m. (but was required to arrive at 6:30 a.m.) and whisked to radiology for the injections for the sentinel node biopsy that will occur concurrently with the mastectomy. I will admit, it gave me pause that the radiologist injected my breast in four locations with a "matter" that had to be carried in a steel paneled box marked "radioactive." And then, he had to dispose of the gloves he used on me into the same paneled box. Regrettably, at the writing of this entry my super powers have yet to show themselves.

Can anyone remind me how long it took for Spidey's powers to kick-in after he got bit?

Countdown & Checklist

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With my mastectomy looming just hours away, it is time to go over the requisite checklist:

1) Derma-planning followed by an Osagi peel. DONE (It will be bad enough to be the Bride of Frankenstein this time tomorrow, but I cannot handle being the Bride of the Wolfman too!)http://www.blogger.com/img/blank.gif

2) Pedicure and manicure. ALMOST DONE (With the multitude of down-time in the OR and recovery, g-d forbid someone should glance upon the toes and be given another reason to snicker!)

3) Packed lovely customized post-surgical camis. OY VEY, DONE! (And yes, they come complete with their own little portable "fluffies" & pockets...do not ask!)

4) Made the kids' school lunches (Because radiology wants me sooooooo early in the a.m. that it makes me wonder what they plan to do with me for 6 hours. So very glad my surgery is not being done at a teaching hospital!)

5) Explained to 8 year-old son's teacher, who called at 9 p.m., that "no" I was not having surgery on the entire left-side of my body from brain to foot. DONE?? (Re-explained to 8 year old too!)

6) Read 8 year-old an extra long bedtime story and danced with him to a Weird Al Yankovic CD. (Yes, it can be DONE.)

7) Watched kids sleeping (even the 17 year old). LET THAT PLEASURE NEVER BE DONE!

The Countdown...

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While embarking on this forced-path, I have made an infuriating discovery. Despite the gross and seemingly exploitative merchandising associated with breast cancer in this country...the medical supply industry does not make "post-surgical" garments in my size!!!!

I am not talking about "things that would be nice to have." But rather, those items that are "necessities" for post-surgical healing. Yet, despite the need, the "industry" of cancer does not find it cost-effective to make these garments in XS. So, as I go through the poking, prodding, and blood leeching (and don't get me started on the contradiction of "pre-surgery" exposure to radiation in the name of diagnostic x-rays), I have to also "tailor" my own "lovely" fashion additions.

So tonight I will have the uplifting task of "stitching my own noose."

As Roseanne Roseanneadanna would say: "What is up with that????"