"The Harsh Reality" of Pink (?)

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I am a devotee of many of my breast cancer "colleagues" blogs. Fabulous, courageous, funny, warm, honest women whom I have never met personally. But who have provided me with a window to share my journey; as well as varying perspectives to color and inform my own path.

In viewing a link to another post  via "Desiderdata" http://desideratajourney.blogspot.com/ today, I came across a hauntingly beautiful and profound black and white retrospective, lovingly documented by a husband, of his wife's breast cancer journey.

It is a must-see: http://mywifesfightwithbreastcancer.com/. I set it to "slide-show" and was so captivated I found myself on the fourth loop before I could tear myself away. And then I found myself emotionally staggered. This is not Pink.This is the reality

It is not necessarily the battle with cancer that we (the collective "we") are fighting. Rather it is the battle with the treatment. If the cancer doesn't kill "us" the treatment most certainly will.

I knew this. But somehow the harsh reality of this obvious fact hit me in the chest today - literally. Treatment has been the most contentious battle-front, for me, since my BC-Day -- July 8, 2009.

It is not the dying of cancer that gives me night terrors. It is the living as a cancer patient that sends me physiologically reeling.

Institute of Medicine ... "Pinkwashed"?

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According to the IOM Report released on December 7, 2011 (see link below), "[m]ore than 230,000 new cases of breast cancer are expected to be diagnosed in the United States in 2011." As such, the following summary by BCAction is significant on a number of levels. For me personally, it amplifies the frustration that I contend with in not knowing / understanding the hows and whys I sit here today with metastatic breast cancer - as I, like so many women have no identifiable risk factors. No "life-style" risk factors what-so-ever; and at the initial stages of my diagnosis over 2 years ago, I went through genetic testing (I needed to know for my 3 children) just to confirm that my DNA was not predisposed. Nothing.

Generally, what is currently not going on at the SABCS, informs me that either the medical community is -- at best, still stymied (by the breast cancer industry, maybe?) or at worst, not genuinely interested, in making any real head way in proactively identifying and addressing the true environmental causes for the increase in incidences of breast cancer - especially in developed countries.

Feeding the personal and general concerns is that this Symposium is reportedly being funded, solely by...Susan G. Komen.

http://www.iom.edu/Reports/2011/Breast-Cancer-and-the-Environment-A-Life-Course-Approach.aspx

For immediate release
December 7th, 2011
Contact: Angela Wall, Communications Manager (415) 243-9301 x16 awall@bcaction.org

SAN FRANCISCO, CA–Breast Cancer Action (BCAction), the respected watchdog of the breast cancer movement, responded with disappointment to the Institute of Medicine (IOM) report on Breast Cancer and the Environment: A Life Course Approach released today at the San Antonio Breast Cancer Symposium (SABCS).

The IOM was asked to review the current evidence on breast cancer and the environment, consider gene-environment interactions, review challenges in investigating environmental contributions to breast cancer, explore evidence-based actions that women might take to reduce their risk and recommend research in all of these areas.

“The IOM Report fails to turn the tide on this epidemic because it misses some important opportunities to implement real changes” said Breast Cancer Action’s Executive Director Karuna Jaggar, commenting from SABCS. “They too broadly define the environment as all factors not directly inherited through DNA which includes anything from genetic changes to tissue, to stress, to lifestyle choices and changes in abdominal fat rather than the chemicals we are all exposed to in our everyday lives.”

Breast Cancer Action is deeply disappointed in the report which fails to advance research on breast cancer and the environment and shed light on the 70% of breast cancer diagnoses for which there are no known risk factors. “The report recommendations for women merely rehash the little bit we already know about lifestyle and breast cancer and miss an opportunity to focus on relatively unknown areas of the environment,” said Jaggar.

The report correctly identifies methodological challenges in data collection establishing links between environmental factors and breast cancer. “In medical science, the gold standard of evidence is random controlled experiments on humans; however, as the report rightly points out conducting random controlled experiments on the effect of toxins on women would be immoral and impermissible. We must find alternatives that enable us to take action.” Jaggar stated that “we need to adopt the gold standard of prevention and that’s the precautionary principle because waiting for absolute proof is killing us. Instead, the IOM shrugged the burden of prevention onto women’s lifestyle choices.”

IOM committee member Dr. Robert A. Hiatt stated at SABCS that if women follow the recommendations of the IOM report “we don’t even know whether they will actually reduce their risk.”Jaggar adamantly argued that “we don’t need reports that dink around with lifestyle choices—more exercise, less alcohol, avoiding excess weight, don’t smoke, etc.—which have at best an extremely small role in reducing breast cancer risk and which fail to acknowledge that not all women have equal access to healthy lifestyle choices. We need to apply precautionary principles that stop cancer before it starts.”

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Breast Cancer Action (www.bcaction.org)—a national non-profit education and advocacy organization refuses to accept funding from pharmaceutical companies or any other organizations that profit from or contribute to the breast cancer epidemic.

CancerCultrChronicle
Posted December 8, 2011 at 10:20 am | Permalink

The Unwilling "Patient"

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When I check in at the radiologist's office, I have to first register for the procedure with a "patient coordinator."

The tech prepping me for the IV contrast for my last bilateral MRI asked, if I had become more or less sensitive / afraid of being stuck, since being a "cancer patient."

On another occasion, I emailed my alternative health care provider, and noted that the contact person for their office had the appellation of "Patient Care Coordinator" too.

It got me to thinking: what does "patient" mean?

It got me to thinking: what am I afraid of?

Definition of PATIENT

A patient is any recipient of healthcare services. The patient is most often ill or injured and in need of treatment by a physician or other health care provider.

The word PATIENT originally meant 'one who suffers'. This English noun comes from the Latin word patiens, the present participle of the deponent verb, patior  meaning 'I am suffering,' and akin to the Greek verb πάσχειν (= paskhein, to suffer).

I have decided that what I am most afraid of is  LIVING AS A CANCER PATIENT.

Therapeutic Cancer Vaccine

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I am not usually a proponent of Big Pharma. This potential breakthrough, however, is too exciting not to share and monitor.  ~ TC

 

Breakthrough: Israel is Developing Cancer Vaccine

Vaxil’s groundbreaking therapeutic vaccine, developed in Israel, could keep about 90 percent of cancers from coming back.

As the world’s population lives longer than ever, if we don’t succumb to heart disease, strokes or accidents, it is more likely that cancer will get us one way or another. Cancer is tough to fight, as the body learns how to outsmart medical approaches that often kill normal cells while targeting the malignant ones.

In a breakthrough development, the Israeli company Vaxil BioTherapeutics has formulated a therapeutic cancer vaccine, now in clinical trials at Hadassah University Medical Center in Jerusalem. If all goes well, the vaccine could be available about six years down the road, to administer on a regular basis not only to help treat cancer but in order to keep the disease from recurring.

The vaccine is being tested against a type of blood cancer called multiple myeloma. If the substance works as hoped — and it looks like all arrows are pointing that way — its platform technology VaxHit could be applied to 90 percent of all known cancers, including prostate and breast cancer, solid and non-solid tumors.

“In cancer, the body knows something is not quite right but the immune system doesn’t know how to protect itself against the tumor like it does against an infection or virus. This is because cancer cells are the body’s own cells gone wrong,” says Julian Levy, the company’s CFO. “Coupled with that, a cancer patient has a depressed immune system, caused both by the illness and by the treatment.”

The trick is to activate a compromised immune system to mobilize against the threat.

A vaccine that works like a drug

A traditional vaccine helps the body’s immune system fend off foreign invaders such as bacteria or viruses, and is administered to people who have not yet had the ailment. Therapeutic vaccines, like the one Vaxil has developed, are given to sick people, and work more like a drug.

Vaxil’s lead product, ImMucin, activates the immune system by “training” T-cells –– the immune cells that protect the body by searching out and destroying cells that display a specific molecule (or marker) called MUC1. MUC1 is typically found only on cancer cells and not on healthy cells. The T-cells don’t attack any cells without MUC1, meaning there are no side effects unlike traditional cancer treatments. More than 90% of different cancers have MUC1 on their cells, which indicates the potential for this vaccine.

“It’s a really big thing,” says Levy, a biotechnology entrepreneur who was formerly CEO for Biokine Therapeutics. “If you give chemo, apart from the really nasty side effects, what often happens is that cancer becomes immune [to it]. The tumor likes to mutate and develops an ability to hide from the treatment. Our vaccines are also designed to overcome that problem.”

For cancers in an advanced stage, treatments like chemo or surgery to remove a large tumor will still be needed, but if the cancer can be brought down to scale, the body is then able to deal with it, Levy explains. ImMucin is foreseen as a long-term strategy — a shot every few months, with no side effects — to stop the cancer from reoccurring after initial treatments, by ensuring that the patient’s own immune system keeps it under control.

In parallel, the company is also working on a vaccine that treats tuberculosis, a disease that’s increasing worldwide, including in the developed world, and for which the current vaccine is often ineffective and treatment is problematic.

Based in Ness Ziona, Vaxil was founded in 2006 by Dr. Lior Carmon, a biotechnology entrepreneur with a doctorate in immunology from the Weizmann Institute of Science in Rehovot. In June, Vaxil signed a memorandum of understanding to merge its activities into Sheldonco, a company traded on the Tel Aviv Stock Exchange.

By Rivka Borochov
For more info about this incredible vaccine, visit Vaxil on the web at www.vaxilbio.com

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Dear Tamera,

Today, FDA Commissioner Dr. Margaret Hamburg announced the revocation of the drug Avastin for treatment of metastatic breast cancer, agreeing with the recent unanimous recommendation of the Oncologic Drug Advisory Committee (ODAC).

Breast Cancer Action supports Dr. Hamburg’s decision to revoke Avastin for metastatic breast cancer based on existing science. Since 2007, BCAction has actively opposed the use of Avastin for metastatic breast cancer patients because of its failure to improve overall survival or quality of life and its serious side effects. 

As a former BCAction board member testified before the FDA panel:

“We all want better treatments for women with metastatic disease. Avastin is simply not that treatment. Women with metastatic disease deserve better.”

Today’s decision is the right one, but it’s not a victory. We will continue to demand and support the approval of more effective, less toxic, and more affordable treatment options for all women with breast cancer. Women deserve more than false hope—they deserve treatments that work. 

Sincerely,

 

Karuna Jaggar

Executive Director

Too Much Pink Ms. Brinker?...Yes, yes there is!

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Anyone who has read my blog knows that I am a card-burning anti-pink rabble-rouser. Or in Ms. Brinker's [founder & CEO of Susan G. Komen] opinion...a grumbler. Nancy'sPoint - a blog that I follow and enjoy, insightfully scrutinized the following OP-Ed by, for, on behalf of Ms. Brinker - wherein Ms. Brinker defends the mission of SGK against plebeians like myself.

I am not going to try and compete with Nancy's dissection. [Check out Nancy'sPoint: http://nancyspoint.com/rumblings-grumblings-my-response-to-ms-brinker/.] I was so enraged, however, when I read Ms. Brinker's OP-ED piece myself, I just couldn't sit quietly. My own opinions and fingers started churning. I share Ms. Brinker's OP-ED in its entirety below.

First impression for the uninitiated [not meant to be derogatory, but only to categorize those who enjoy an envious life beyond researching anything and everything related to breast cancer] may be..hey, SGK sounds like they are on the front line for those living with breast cancer...PINK ON! Then, there is the fact-check. And Ms. Brinker's defenses, in my opinion, crumble. I share my opinion and my two cents in CAPS at the most egregious of her statements, below. I have also included  all of the posted comments to Ms. Brinker's OP-ED. They are articulate, respectful, and spot-on. They challenge the unsupported assertions of Ms. Brinker brilliantly, and made me proud to be an ANTI-PINK RABBLE-ROUSING GRUMBLING PLEBE.

Another View: Too much pink? Not while breast cancer still kills

Special to The [Sacramento] Bee

OPINION - Published Sunday, Oct. 30, 2011

Nancy G. Brinker, former ambassador to Hungary, is founder and CEO, Susan G. Komen for the Cure. She is responding to the Oct. 23 article by Francesca Lyman in California Forum, "Pink Inc. has many starting to see red."

October is Breast Cancer Awareness Month, and every year at this time we hear grumblings about pink, the color of the breast cancer movement.

"There's too much pink." "We have enough awareness." "Where is the money going?"

When a Portland woman is living in her car because she can't afford her cancer treatment; when a Chicago woman has to choose between paying bus fare to treatment or buying food for her family; and when treatments for metastatic breast cancer are often more debilitating than the disease itself, then there is not too much pink during October. We'd argue there's not enough.

MS. BRINKER, YOU NEGLECT TO SHARE THE LACK OF FUNDING THAT SGK ITSELF DIRECTS TOWARD METASTATIC BREAST CANCER RESEARCH & TREATMENT. YOU GLOSS OVER THE SAD FACT THAT SGK SOLELY FOCUSES ON EARLY DETECTION...WHICH DOES NOT NECESSARILY "SAVE LIVES." THE VERY TRAGIC IRONY IS THAT SUSAN G. KOMEN DIED FROM METASTATIC BREAST CANCER. SEE ALSO... http://boo-bee-trap.blogspot.com/2011/10/peaking-behind-pink-curtain.html

For the skeptics out there, we'd invite you to take a few minutes to learn what the pink is actually doing. You might be surprised to learn that 84 cents of every dollar spent by Susan G. Komen for the Cure over the past five years has gone to cutting-edge research, to community programs that get women into and through cancer treatment, to advocacy programs that preserved cancer funding in 19 states, and to things that mean a lot when you're sick, like wigs, groceries, co-pays and, hopefully, an end to having to choose between feeding your family and going to the doctor's office.

FOR THE "PINK BELIEVERS" OUT THERE, SGK HAS BEEN IN EXISTENCE FOR 32 YEARS, WHICH BEGS THE QUESTION: WHY DID SGK ONLY START DIRECTING FUNDING  TO "CUTTING-EDGE RESEARCH" FIVE YEARS AGO?  MORE CURIOUS IS THAT OF THE ESTIMATED $2.1 BILLION TOTAL PUBLIC SUPPORT AND REVENUE RAISED (1982-2010) SGK SPENT ONLY $500 MILLION ON RESEARCH.

Pink also pays for awareness, because despite the assumption that everyone knows all there is to know about breast cancer, women still tell me they don't need a mammogram because there's no history of breast cancer in their family (awareness check: most people diagnosed with breast cancer have no family history); or because they've never worn underwire bras (awareness check: underwire bras have nothing to do with breast cancer).

"FINDING CANCER DOES NOT ALWAYS SAVE LIVES....MAMMOGRAMS CAN RESULT IN FALSE-NEGATIVE RESULTS [AS MY PERSONAL HISTORY OF MAMMOGRAMS ATTEST]. REGRETTABLY, SCREENING MAMMOGRAMS MISS UP TO 20% OF BREAST CANCERS THAT ARE PRESENT AT THE TIME OF SCREENING. FURTHER... SCREENING MAMMOGRAMS ALSO FIND CANCERS & CASES OF DCIS THAT WILL NEVER CAUSE SYMPTOMS OR THREATEN A WOMAN'S LIFE, LEADING TO 'OVERDIAGNOSIS' [AND 'OVERTREATMENT'] OF BREAST CANCER...EXPOSING WOMEN UNNECESSARILY TO THE ADVERSE EFFECTS ASSOCIATED WITH CANCER THERAPY."

http://www.cancer.gov/cancertopics/factsheet/detection/mammograms 

So no, there's not too much awareness. And yes, all this pink does quite a bit of good.

The $685 million that Komen has invested in research over 30 years has helped reduce breast cancer death rates by 31 percent since 1991. It has helped improve five-year relative survival rates for early stage cancers to 99 percent, up from 74 percent when I started. It has paid for treatments that are making it possible for many women, even with aggressive or metastatic disease, to live longer, and it has provided key research findings for patients with other types of cancer, most notably those with BRCA 1 or BRCA 2 genetic mutations.

SGK's OWN 990 REPORTS INDICATE ONLY $500 MILLION INVESTED, NOT $685M.  I CULLED AGAIN THROUGH KOMEN'S REPORTS, AFTER READING MS. BRINKER'S OP-ED, AND COULD NOT FIND THE ADDITIONAL $185 MILLION SHE PADS ON TO THE ABOVE FIGURE. MORE IMPORTANTLY, HOWEVER, IN 1991, 43,583 WOMEN DIED FROM BREAST CANCER.  http://www.cdc.gov/mmwr/preview/mmwrhtml/00026281.html 
ACCORDING TO THE CDC, IN 2007 (the most recent year numbers that are currently available) 40,598 WOMEN DIED IN THE U.S. FROM BREAST CANCER. http://www.cdc.gov/cancer/breast/statistics/index.html THE DIFFERENCE IS 14.6 %, NOT 31%; AND SGK'S ACTUAL CONTRIBUTION TO THE ACTUAL DECREASE IN NUMBERS IS NOT DEFINITIVE. ANECDOTALLY, OF THE 3 ONCOLOGISTS I INTERVIEWED FOR  MY OWN CARE, ALL OF THEM CONCURRED THAT THERE REALLY HAS NOT BEEN A DECREASE IN THE DEATH RATE FROM BREAST CANCER IN 50 YEARS. THE REPORTED DIFFERENCES IS HOW THE DEATHS OF WOMEN ARE BEING CATEGORIZED. E.G. UTERINE CANCER, OVARIAN CANCER vs. MBC.

At Komen alone, the funds raised from pink paid for 700,000 breast screenings last year for poor and uninsured women, and provided financial and social support for another 100,000.

BY THE WAY, SGK OWNS STOCK IN GENERAL ELECTRIC - ONE OF THE LARGEST MAKERS OF MAMMOGRAPHY EQUIPMENT IN THE WORLD.

All told, Susan G. Komen has pumped $1.3 billion into programs in thousands of communities that provide this real help to real women, men and families facing breast cancer.

In California, Komen has funded $64 million since 1982 to research at institutions across the state, including 68 active research projects totaling $30 million today. The eight Komen Affiliates serving California have awarded millions to local community programs and fought to preserve state-funded breast cancer programs for California's low-income and underserved women.

The research we're funding here, and globally, is investigating environmental factors in breast cancer, real prevention strategies, ways to find breast cancer before symptoms appear, ways to stop it before it spreads, and ways to effectively treat the deadliest forms of this disease for those with metastatic and aggressive disease. The community programs target women who, without our help, will not get access to screenings, cancer treatment and follow-up care.

GLAD YOU BROUGHT UP ENVIRONMENTAL FACTORS MS. BRINKER...WHAT ABOUT SGK'S REQUISITION OF ITS NEW PERFUME, "PROMISE ME," THAT CONTAINS GALAXOLIDE - A KNOWN HORMONE DISRUPTER, AND TOLUENE - A POTENT NEUROTOXICANT BANNED BY THE INTERNATIONAL FRAGRANCE ASSOCIATION. http://boo-bee-trap.blogspot.com/2011/09/promise-me-pink.html
WHAT ABOUT SGK'S FLIP-FLOPPING ON THE IMPACT OF POLYCARBONATE PLASTICS CONTAINING BPAs ON OUR HEALTH. SEE, SGK WEBSITE 02/2011. COULD SGK'S INCONSISTENT STANCE ON BPA LADEN PLASTICS BE ATTRIBUTABLE TO ITS BRAND NAMED SPONSORS: COCA-COLA, GENERAL MILLS, GEORGIA-PACIFIC, 3M - INDUSTRIES THAT ALL USE BPAs IN THEIR MANUFACTURING AND PACKAGING.  MS. BRINKER, I NOTE THAT YOU ARE ALSO SILENT AS TO THE FACT THAT SGK OWNS STOCK IN SEVERAL PHARMACEUTICAL COMPANIES, INCLUDING ASTRA-ZENECA (aka AZKONOBEL), THE MAKER OF TAMOXIFEN - WHOSE SIDE EFFECTS INCLUDE UTERINE CANCER.

Research and community programs cost money, and we make no apologies for raising the funds that make them possible. In fact, we need to raise more, because - despite our advances - a woman is still being diagnosed with breast cancer every 19 seconds and a woman dies of breast cancer every 74 seconds somewhere in the world.

WHILE WOMEN CONTINUE TO DIE AT RATES THAT HAVE NOT SIGNIFICANTLY CHANGED SINCE 1960, SGK SPENDS NEARLY $1 MILLION YEARLY SUING SMALL CHARITIES FOR THE USE OF THE WORD: "CURE." SGK'S GENERAL COUNSEL, JONATHAN BLUM, WHEN COMMENTING ON A LEGAL BATTLE INVOLVING SGK AND A SMALL LUNG CANCER NON-PROFIT, FOR USING THE WORD "CURE", STATED: "WE SEE IT AS RESPONSIBLE STEWARDSHIP OF OUR DONOR'S FUNDS.

Do consumers need to be aware of where their dollars are going? Absolutely. We urge people to do their homework before donating to ensure that their dollars go to organizations that are legitimately engaged in ending breast cancer.

WHICH IS WHY IN REVIEWING SGK'S 990s YOU CAN DISCOVER THAT THE CLAIMS BY MS. BRINKER, ON BEHALF OF SGK, DO NOT PAN OUT.

If you do like pink - and our surveys say most people do - then I thank you for seeing it for what it is: the symbol of a movement that is doing all that it can to end suffering from the leading cancer killer of women worldwide. Half a million women will die of breast cancer in the world this year, including 40,000 right here in the United States.

AGAIN, MS. BRINKER, IT CANNOT BE OVERSTATED, THAT THIS NUMBER HAS NOT SUBSTANTIVELY CHANGED IN 50 YEARS, DESPITE THE BILLIONS RAISED...AND SPENT BY SGK.

Roulette Wheels as breast markers
...nice. At least they're organic [?]

There won't be enough pink until the fight against this disease is won.

© Copyright The Sacramento Bee. All rights reserved.

Showing 8 comments (these are the total comments that were posted)

• 
  Bobbalino                                           

  You say that your research over the last 30 years "has helped reduce breast cancer death rates by 31 percent since 1991. " But breast cancer mortality is going up not down!

  

• Carrie Anne Kelly                                           

  Lets stop "cutesifying" Breast Cancer with all the pink nonsense and get to the matter at hand which is that your organization is aligning itself with the very industries that are suspect to be using harmful material in the production of their products. If you are really interested in finding the cure, then show us by demanding accountability from the food, cosmetic and household cleaning industry. Oh right. You're too busy suing smaller organizations for using the term "For the Cure".

  
  
• 
  BBZinger                                           

  Ms. Brinker has been defending pink for years. Her anecdotes don't prove her point. If women with breast cancer are living in their cars, they don't need pink, they need money. When I was Executive Director of Breast Cancer Action, and since, I have heard numerous complaints about Komen's non-responsiveness to individuals in need of help, despite the enormous resources at Komen's disposal. Pink is a pretty color, but there is nothing pretty or happy about a breast cancer diagnosis. For a different view, see www.barbarabrenner.net
• 
  natrum                                           

  Ms Brinker, What I do not understand, is why so very little, if any, of the Komen Millions of dollars is spent on education regarding prevention. There is good information out there, and much benefit could come from people learning about diet, the protection afforded by adequate vitamin D, the fact that ingested sugar directly feeds cancer cells, the toxins in our consumer products, the dangers of radiation.... the list is very long. Heredity is a small part of risk. And even then, gene expression is not an absolute. The environment plays a key role. Pink buckets filled with chicken pumped with hormones and antibiotics, coated in who-knows-what, fried in genetically modified soy oil, is an example of the environmental dangers to avoid.
  Breast cancer "awareness" needs to include actions to take to avoid it, even at the risk of offending industrial sponsors whose products are implicated in causation.  This is information I want my sister to know.
• 
  Erika Munson Sudz                                           

  Funny thing, I looked ALL Over the Komen web site for assistance regarding prescriptions/travel/insurance/lodging. All I found were links to OTHER organizations to ask for assistance there was nothing there showing how Komen was offering to help anyone. Such a scam

  
• ricaLIVESTRONG                                           

  The Pink Machine driven by Komen is a FARCE. I have called and tried to contact Komen for support during my breast cancer battle. Those requests for help, the chance to redeem themselves in my eyes, were ignored, though I WAS subscribed, unwillingly, to their marketing material. Thanks, Komen, but LIVESTRONG will get every cancer-fighting dime I have to give.
  
  The ongoing hypocrisy of Komen is sickening, to the point that I need to ingest some pink - Pepto-Bismol.
  
  Partnering with companies like KFC for a pink bucket, which only ENCOURAGES behavior that can INCREASE CHANCES of breast cancer, selling perfume and glamorizing the fight by wrapping it up in pink bows, and showing beautifully made-up bald women (who are obviously wearing bald caps) is false advertising and INSULTING to those of us in the throes of the fight.
  
  And do I even need to bring up the despicable habit of taking over the phrase "For The Cure?" Well, here. Sue me.
  
  I encourage EVERYONE out there to REBEL For The Cure.
  Pink ribbons are not welcome in my home, or hospital room. Yellow is.
  
  LIVE STRONG.     
• 
  CA_Comment                                          

  Ms. Brinker - respectfully the public does support the need to help connect and drive critical funds to research that will deliver a cure, improve awareness, improve early detection, aid diagnosis, and help women and men get access to critical care for this cancer so they may fight and survive this disease, as well as regain quality and quantity of life. To say we do not care about this because we question the current implementation of the pink campaign is incorrect.
  
  We are giving you valuable feedback that the pink campaign is important (otherwise no one would care to give you feedback), We are telling you it appears the pink campaign is at risk of becoming distracted/diluted and in some business alliances and implementations the campaign is downright hijacked. You may not like this message...but this message is real and affords an opportunity for you and others working to make a difference to consider and adjust. We are not telling you to stop. We are however telling you there is a need to make some changes or you risk alienating even more of your supporters.
  
  Although your organization holds a position as a leading voice on this cause...you must remember this is a human issue we all own. We are your stakeholders. We want and need you (and other organizations who can help us make a real impact) to be successful. In exchange for our support, we are demanding a vigilance by you or anyone else that takes this role. Our message is be attentive that the means-to-an-end approach does not become the actual downfall for the support needed to defeat the cancer itself. What decisions you make...good or bad...not only reverberate to breast cancers...but they spill over to work being done for all cancers.
  
• Miss Susie                                         

  I have to agree with this idea. When I saw the pink KFC basket, I thought, really? Fast food containers for cancer--doesn't that just encourage people to live a lifestyle that promotes disease while allowing themselves to feel good about it because it's going to cancer? I felt the same way when another chain (or maybe it was also KFC) was promoting a beverage special--read: cola--to help the fight against diabetes.
  
  When it's all about buying 'pink,' you run the risk of marginalizing the issue--it's not a serious medical issue, we can just solve it by shopping. The various partnerships make it also seem a little hokey. I never buy pink because I always stop and think to myself, well, once the money spent goes to pay for the actual item, the costs of shipping and production, marketing, packaging, et cetera, there's probably very little left for actual breast cancer. (The few things I need that come in pink don't really match my house, like the KitchenAid mixer I saw when I was buying one.)
  
  I'm all in favor of getting more pink out there for the awareness, but I think there is a valid point to be made about being cautious of various commercial partnerships.

  
  

I am having a Hallmark moment...in the pit of my stomach

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Really ?????????

A Constant State of Being

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SURREAL is a constant state of being when you live with a chronic disease.

You are in a surreal state of numbness, waiting for the next test / imaging results. Trying to convince yourself you are not worried. Holding your breath while you pretend to breathe.

It is sensorally surreal, the incessant barrage of cancer commercials & tag lines: "changing the face of cancer" "changing the history of cancer" "cancer has a new enemy."

It is incomprehensibly surreal watching pink walkers chanting "Fight, fight, fight" when all I really I want to do is LIVE...LIVE...LIVE.

It is ragingly surreal wondering daily, what does this pain mean; what does that ache indicate.

You are in a protective surreal bubble, convincing yourself that you actually do not mind the bruised veins. That in some grotesque way they are a badge of honor.

It is glaringly surreal being so acutely aware of those moments when you actually feel good, because those moments seem to arrive less often.

It is the epitome of surreal, being awoken each morning by a pain, by an ache, and making the conscious decision that regardless, "it is time to make the donuts," and you are the one that has to do the making.

The "Cancer" Conversation

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The "cancer conversation" can be a focal point of stress for me, personally. It is not that I don't or won't converse. When specific, non-judgmental inquiry is initiated I do not have any qualms about answering. The open-ended "how are you feeling"? Or the blatant, expectation for me to "dish" - I can feel my emotional protective wall envelope me. Not because I am protecting myself from the inquiring person, but because I am protecting myself, from myself.  More so when family "expects" me to be the one to initiate the discussion. I also, selfishly, (and I do use that description quite a bit when trying to express how I am dealing with my chronic illness. Not because I am being self-deprecating, but because cancer is a "selfish" state of being) squirm at the thought of having to deal with the inquiring persons reactions.

Then there is the discomfort of the unknown. When presented with the open-ended query of: "how are you feeling [or doing]"; I am not sure just how much the inquisitor really wants to know. We live in a society where the perfunctory start to every conversation, whether it be with the SB Barrista, a client, an adversary, or a BFF, starts with "how are you"

In short, its complicated

The below synopsis, of a study conducted by The University of Texas' study on cancer communication, delves into the complexity of this "conversation."

Reprinted from "Navigating Cancer" - October 12, 2011

Some people choose to discuss their health concerns with those who are closest to them. Others prefer professional counselors, support group members, other survivors, or acquaintances made through the Internet. Not everyone finds the connection they need from the same source, and the depth of the conversation will vary as well.

Communication about an illness was the focus of a study conducted at The University of Texas which provided interesting results. Researchers specifically looked at patients asserting control over how they chose to discuss their illness, or chose not to discuss it. The overall findings suggest when patients assert control over communication it helps to overcome feelings of helplessness. In this way patients can determine an aspect of how they want to face the challenges of their diagnosis.
Erin Donovan-Kicken, assistant professor of communication, led the research to examine the strategies people with cancer use to communicate with family, friends, and colleagues. Donovan-Kicken and her team interviewed cancer survivors on how they approached the topic of their diagnosis with various audiences. The team gathered data regarding the advice patients received, the challenges they faced, and the recommendations they would make when talking about a disease. The participants were also asked to evaluate existing patient literature and how they managed information about their illness.

The study results indicate that asserting control over communication is an important factor for patients coping with the stress of cancer. Yet despite best efforts to control that communication, patients can’t control other people’s reaction. Patients will benefit from setting boundaries with family and friends when they need space to be ill or feel emotional in private. They should be allowed to focus on themselves without needing to support others, and to avoid people who are overly solicitous. Choosing not to engage in social discussions about an illness can prove to be an empowering decision for some patients.


Ultimately Donovan-Kicken’s research defined the difference between asking –
“Are you opening up to people?” and
“Do you have people you can talk to if you want to open up?”

The distinction is note-worthy for oncologists and survivor advocacy groups who counsel and provide support to patients. Patient literature could also be refined to emphasize what is meaningful about communication from patients’ perspectives. It could include suggestions on how to manage or withhold from personal health discussions, and establish boundaries allowing patients to experience their illness in a way that best suits them.

Wednesday Dip

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I find that most times I am my own worst distraction. Which is probably why I put so much energy into work and advocacy. It takes me out of my own head. That said, I am being told -- externally and internally that I...ABSOLUTELY...NEED...TO...SLOW...DOWN.

It is when I slow down, however, that I become more acutely aware of the crowded real estate masquerading as my brain.

I shared with someone that I wanted to come back in my next life as a Bottle nosed Dolphin. That then, I would slow down.

She guffawed and said that even as a Dolphin I would dive (bad pun intended) into fostering baby dolphins and create and run a non-profit: SMfMR (Sea Mammals for Marine Restoration). 

She is spot on. And, quite frankly, it doesn't sound like a bad plan.

Understanding Lymphatic Metastases ... A Beginner's Primer

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Spread of Cancer through the Lymphatic System

(Summer 2011 - Reprinted from Cancer Quest / Emory University / Winship Cancer Institute  http://www.cancerquest.org )

The Lymphatic System


The lymphatic system plays an important role in controlling the movement of fluid throughout the body. Specifically the lymphatic system controls the flow of lymph, a colorless fluid containing oxygen, proteins, sugar (glucose) and lymphocytes (cyte=cell). Once they are formed in the bone marrow, lymphocytes circulate in the body and reside in lymphatic tissue including lymph nodes and the spleen, where they search for and await contact with their target proteins. The lymphatic system is a system of vessels (tubes) that is present all throughout the body. Like the more familiar circulatory system, the lymphatic system carries fluid, proteins and cells of the immune system.

Red blood cells are not found in the lymphatic system. The two systems (lymphatic and circulatory) are connected. The lymphatic system picks up fluid and cells from around the body and returns them to the circulatory system via ducts located in the neck/shoulder area. The fluid within the vessels is known as lymph. There are some similarities and differences between the (more well known) circulatory system and the lymphatic system.

Small lymphatic vessels merge into larger ones and these large vessels eventually empty into lymph nodes. Lymph nodes are kidney bean shaped tissues that are found in grape-like clusters in several locations around the body. Lymph nodes are sites of immune system activation and immune cell proliferation (growth). The fluid in this extensive network flows throughout the body, much like the blood supply. It is the movement of cancer cells into the lymphatic system, specifically the lymph nodes, that is used in the detection of metastatic disease.

Spread of Cancer Through the Lymphatic System

The lymphatic system is of great importance in cancer for several reasons:

• Cancer cells can spread (metastasize) by getting into the lymphatic system.
• Many cancer types are classified or staged by whether or not cancer cells can be found in lymph nodes close to the site of the original tumor. The logic is this: The lymphatic system is found all over the body so if cancer cells from a tumor have made it that far, they may also have traveled to distant locations.

When a cancer cell has moved through the blood or lymphatic systems or via direct contact to another location, it may divide and form a tumor at the new site. Metastatic tumors often interfere with the functions of the organs involved and lead to the morbidity and mortality seen in cancer.
The lymphatic system plays a crucial role in the metastasis of certain cancers. Lymphatic vessels are designed for entry and exit of immune cells, and are therefore easy for tumor cells to enter. In addition, the flow of lymph is quite slow, so there is little stress to harm cells.⁽¹⁾ Researchers originally believed tumor cells invaded the lymphatic system by eroding the vessel walls as the tumor advanced and metastasis would then occur by passive drainage. However, current evidence suggests the interactions between metastasizing cells and lymph vessels are much more active and complex, and specific interactions between the two are required.

The presence of metastases in lymph nodes near the primary tumor often indicates metastasis to distant organs, and is a significant prognostic indicator in many cancers. To assess the presence of metastasis to surrounding lymph nodes, physicians perform a lymph node biopsy. In this procedure, the lymph nodes are removed by surgery and are checked for the presence of cancer cells. Nodes are determined either positive or negative for cancer.

Because lymph drainage pathways from a tumor vary greatly between patients, even for the same area, up to 30% of tumors cannot be accurately predicted to migrate to specific lymph nodes. Improvement in lymphatic imaging and mapping are needed to ensure that metastasizing cancers are not accidentally missed. ⁽²⁾


The diagram below shows the lymphatic system


  

1. Kopfstein, L., and G. Christofori. 2006. Metastasis: cell-autonomous mechanisms versus contributions by the tumor microenvironment. Cell Mol Life Sci. 63:449-68. [PUBMED]
2. Shayan, R., M.G. Achen, and S.A. Stacker. 2006. Lymphatic vessels in cancer metastasis: bridging the gaps. Carcinogenesis. 27:1729-38. [PUBMED]

Routes of Metastasis

There are three primary ways tumors can spread to distant organs:

1. Through the circulatory (blood) system (hematogenous)
2. Through the lymphatic system
3. Through the body wall into the abdominal and chest cavities (transcoelomic).

The circulatory system is the primary route of spread to distant organs, while lymphatic vessels provide a route to local lymph nodes, after which metastases often travel through the blood ⁽¹⁾ While the circulatory system appears to be the most common route, the extent of lymphatic versus hematogenous spread appears to depend on the origin and location of the primary tumor.⁽²⁾ For example, bone and soft tissue tumors (sarcomas) spread primarily through the blood, while melanoma, breast, lung and gastrointestinal tumors spread through the lymphatic system.⁽³⁾ Transcoelomic spread is fairly uncommon, and appears to be restricted to mesotheliomas and ovarian carcinomas.⁽⁴⁾

In order for tumor cells to gain access to lymphatic or blood vessels, tumors need to promote the growth of these vessels into and around the tumor. Growth of blood vessels is called angiogenesis, and growth of lymphatic vessels is lymphangiogenesis.

1. Bacac, M., and I. Stamenkovic. 2008. Metastatic cancer cell. Annu Rev Pathol. 3:221-47. [PUBMED]
2. Gerhardt, H., and H. Semb. 2008. Pericytes: gatekeepers in tumour cell metastasis? J Mol Med. 86:135-44. [PUBMED]
3. Kopfstein, L., and G. Christofori. 2006. Metastasis: cell-autonomous mechanisms versus contributions by the tumor microenvironment. Cell Mol Life Sci. 63:449-68. [PUBMED]
4. Tan DS, Agarwal R, Kaye SB. Mechanisms of transcoelomic metastasis in ovarian cancer. Lancet Oncol. 2006 Nov;7(11):925-34. [PUBMED]

Treatments that Target Metastasis

Metastatic Suppressors

Recent work has uncovered a group of molecules that act to induce or suppress metastasis without affecting the growth of the primary tumor. Many molecules, termed Metastatic Suppressors, have been identified. These molecules are critical for different stages of metastasis, and may function to inhibit cell death upon loss of cell adhesion, or enhance the ability of cells to migrate through the stroma. Researchers are hopeful that these molecules may prove valuable as anti-cancer/anti-metastasis targets.⁽¹⁾
It is important to realize that the majority of current anti-cancer drug studies are conducted using primary or cultured tumor cells, and the efficacy of each drug is measured by its ability to reduce the size of primary tumors or kill cells being grown in laboratories. However, because metastatic suppressors do not affect growth of the primary tumor, it is likely like many potentially useful anti-metastatic drugs have been overlooked. New methods of analyzing the ability of drugs to inhibit metastasis, rather than primary tumor growth, are being developed, and should lead to a useful new class of therapeutic compounds.⁽²⁾

Anti-angiogenesis Therapy

Because metastasis relies on the growth of new blood vessels in both the primary and secondary tumors, drugs that inhibit angiogenesis may inhibit metastasis. Currently, the combination of anti-angiogenesis drugs with chemotherapy/radiation is the most effect treatment. Unfortunately, many tumors become resistant to the anti-angiogenesis treatment, so this is generally not a longterm solution. ⁽³⁾

Current research into inhibiting metastasis is focusing on understanding which step of metastasis is the most amenable to therapy. The identification of metastatic suppressor genes has opened up many exciting new potential targets for preventing and inhibiting this deadly event.

1. Stafford, L.J., K.S. Vaidya, and D.R. Welch. 2008. Metastasis suppressors genes in cancer. Int J Biochem Cell Biol. 40:874-91. [PUBMED]
2. Steeg, P.S. 2006. Tumor metastasis: mechanistic insights and clinical challenges. Nat Med. 12:895-904. [PUBMED]
3. Gupta, G.P., and J. Massague. 2006. Cancer metastasis: building a framework. Cell. 127:679-95. [PUBMED]

A Glimpse at the 'Survivor Side' of the Cancer Journey

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Been reading your blog; won't post anything on it for all to see since there is no mention of us on it.

Prologue ~ I believe I am beginning to understand who the true cancer "survivors" are. It is not the ones with the disease. It is those who surround us.

I am so glad you are reading the blog. I do mention you guys in “.......” in July. If I am not railing against the Pink-Industry, I mostly mention Husband and kids, I think it is because managing their day to day life with my chronic disease is a FT job.

You sound offended. No slight in any which way is intended, has been intended, or ever will be intended. I truly am sorry if you are feeling slighted in any way or form.


My writing is what I am feeling about living with a chronic disease, and the blog helps me distill those feelings, whether they be outrage, disgust, euphoria, sadness, or even pedagogical and snarky.

I know that it appears I am being selfish about my cancer.

I am.

But not because I am trying to be hurtful to others.

When I am asked, I will share what I feel I am emotionally or psychologically capable of sharing at a given time. It is difficult for me, most times,  to "share" when I am speaking with people. Even with Husband it can be an uncomfortable subject...to acknowledge that my life has been reduced to a 20% chance of surviving 5 more years. ONLY if I do / did what conventional medicine offered...which I chose not to.

It is easier for me, and always has been, to write. So, now I blog. And for those who want to “know” what is up with me, my blog is a forum in which they can delve at their leisure, without ME getting in the way.

And for those few who read, commenting is voluntary and appreciated, but never necessary or required.

Thank you for sharing your feelings with me. Your one cryptic, yet pointed, sentence did speak volumes.

I may not meet your or anyone else's expectations, but do know it is not because I am trying to hurt anyone in any way. Or, that I am being consciously self-centered. I think I do understand how challenging it is for you - to be a spectator while I take this journey. You are not the only one who, at times, feels "left out."  Husband, too can only be a spectator. Cancer is not a "team" sport. And, admittedly, I am not a good Team Pink player.


But it does not mean that I don't love you, and appreciate you. I love you, as me. That's all I can do.

So you say its your birthday...IT 'S MY BIRTHDAY TOO YEAH!

******

...and we're going to a party party...

Birthdays. We can dread them.
We can lament them.
And we can say to ourselves: "self...how did I get here?"
We can count the crows feet and smile lines.
We can frown, or do botox.
Or we can cheer.
Each one is treasured. At least well-earned.

I turned 50 today. WT...???
...and WOW!
30 years ago I could not imagine myself at 50.
That was just too old.

Now I am. And I have more money to behave more badly than I did when I was 20. Life is GOOD!

I have just had the best birthday EVER!

Why? Because it was planned and orchestrated with one thing in mind...ME! Yippee Skippee! One day a year when selfishness is not only tolerated, but expected.

The last 24 hours have been about fulfilling desires, and it was all devised by Husband. [Major...MAJOR... kudos to him.] When someone loves you enough to put together 24 hours totally meeting your happiness. Well, it is...LOVE.

Husband carted me off to Vegas. Okay, not so special, except Vegas is a land of fantasy and enchantment, and anything can indeed happen in this desert oasis.

Just put on the rose tinted glasses and let yourself IMAGINE.

T-minus 2.5 hours before my 1/2 century mark, and Husband sweeps me off to the BEATLES LOVE a la Cirque du Soleil. An amazing 2 hour LSD trip complete with soundtrack, dancers, film clips and haunting montages. And no needing to come down, or hang over. The last track came on. The silk screened props illuminated the Fab Four 1968 and I found myself tearing up.

 OY nostalgic me!

We return to the hotel room and a dozen chocolate dipped strawberries and a bottle of chilled champagne awaits!

OY sucker for a good berry, I am!

The morning of my birth arrives. Wake up! We have time for you get a bathing suit on and get you your morning coffee...HURRY! [This from the man doing his a.m. morning yoga stretches butt-naked...TMI]

Coffee is nabbed and off we are to the Dolphin Habitat. I AM TO BE A TRAINER FOR THE DAY...and it was the...entire...day. Wet suit donned, instruction begins...:

Herring kisses.
Dolphin eczema.
Fish breath.
500 lbs of pure beauty.
Goof balls.
B-a-b-i-e-s!!!
Stoop samples...ew.
Personality.
Soft bellies
Scarred bodies.
Sweet testosterone boys.

Protective matriarch.
Play time.
Exercise.
Hugs.
Friends.

...did I mention that I cried?

Back to the room.
Washing kippers out of my hair, lips and hands.

I squeeeeeeeeeeeeeeeeeze into my black skinny jeans. Put on 4 inch black patent leather stilettos (heh, heh...now I am 5'4") and slither into a black sequined tank. Next door to Caesar's Palace and the 1M Dollar Piano Extravaganza. For the uninitiated, it is Sir Elton John putting on his most memorable concert ever (and he was my first in 1973 at LA Dodger Stadium...35lbs ago. ELTON, not me! My parents gave me the tickets in 1973 for my 13th bday. I have now come full circle). EJ talked, he joked, he sang Spanish Harlem; and Husband had me strategically seated center stage piano.

Here's news...I cried!

I feel so incredible. So satisfied. The only other times I can remember feeling this euphoric: My wedding day in 1989 as I anxiously paced hoping Husband-to-be was not going to jilt me for a soccer game ~ he's a playa; the births of each of my three children (yes, I cried at each); and today, my 50th Birthday.

Thank you Husband. Thank you my children. Thank you my sister and niece...yeah yeah...and brother-in-law and niece's boy toy.

In 9 minutes I will be embarking on my 51st year, and it feels good.

...All you need is LOVE...LOVE is all you need! ...at least for today, and today is enough.

Sunday's Spillage

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....and now for something completely random....

The posting of Sunday's Random Thought only generated more thinking. As I subtly indicated, I am not one for labels, but since the marketing of cancer requires some form of appellation, I started thinking of possibilities...

[Cancer] Sojourner (n)

a person who resides temporarily in a place ....  well maybe not. Temporary is subject to too many meanings.

[Cancer] Journeyer (n)

one who goes on a journey .... add in, "especially to territories unknown," and this has potential.

[Cancer] Explorer (n)

someone who travels into little known regions (especially for some scientific purpose). ... now this definitely hits a chord with me.  Preface with UNWILLING EXPLORER and this may hit the mark. I can't see pink industry marketers doing cartwheels, however.

"JOIN US IN THE 3-DAY WALK TO BENEFIT 'UNWILLING BREAST CANCER EXPLORERS ' ....JOURNEYERS.....SOJOURNERS......."

But these just don't sell the product does it? 

They just don't capture the essence of cancer, do they?

These labels don't make a person want to run out and participate in retail philanthropy.

....
To sell a product or commodity...the Madmen[tm] have found the following to be effective. This does not make me question the Madmen [tm], but rather, their perception of the consumer. Check out NancysPoint for a different, but important take on marketing and feminism: http://nancyspoint.com/feminism-breast-cancer/

Junior High mentality (no offense to 13
year olds intended)

Does Campbell's use lead-free and aluminum
free cans? Check out the list of preservatives!

This pretty much sums up the driving force
behind the pinkindustry

Yeah...Biff is thinking about the lack of strides in finding
the CAUSE & CURE for breast cancer while
swinging on the back nine

Just don't inhale when using this product

Beer Pong Table...Really????

...there are no words for
 the feelings this ad invokes