What will you do to safeguard the future from toxins?

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As someone who is dealing with chronic cancer. As someone who, both medical communities, speculate that my cancer is due to exposure to environmental toxins of some sort, the following struck quite a chord with me. My goal, as I deal with my own health situation, is to further safeguard my children's future by educating them about the health risk of living and breathing every day. What will you do to safeguard your children's future?

 

What do detergents and fragrances have to do with breast cancer?

Posted on September 14, 2011

One in eight American women will be diagnosed with breast cancer during their lifetimes. Of the women who get it, one out of five will die from it.

Understandably, given these statistics, many women worry about their chances of getting breast cancer. Some women with high risk factors, such as having close relatives who have had breast cancer, go through extra screenings. Some even consider preventative removal of their breasts.
We know that more cases of breast cancer are occurring than fifty years ago. Unfortunately, a whopping 70% of these breast cancer cases are not associated with any known breast cancer risk factors. Scientists are searching for answers.

Everyday chemicals can act like hormones

Over the last decade, scientists have established that some of the chemicals women exposed to can affect their chances of getting breast cancer. For example, certain chemicals called endocrine disruptors can interact with our biology by mimicking the hormones our bodies normally produce (the technical term is the endocrine system). Some of these interactions are thought to increase the chances of getting breast cancer.

How much should we worry about endocrine disruptors? Well, exposure data indicates that we ought to be fairly concerned.

Endocrine-disrupting chemicals are all around us. They are used in everyday products like detergents, antibacterial soaps, plastic containers, air freshener sprays and flame-resistant furniture. We take in these chemicals through our skin, through the air we breathe, and even through chemically contaminated food.

Everyday chemicals are affecting young girls

Phthalates are a group of chemicals produced in huge amounts, exceeding 470 million pounds per year. Phthalates can be found in products made from polyvinyl chloride (PVC) plastic, like shower curtains and flooring. They are also found in varnishes, paints, medical devices like IV tubing and blood bags, and more.

Certain phthalates are endocrine disruptors and have been linked to early puberty and breast development in girls. Research has shown an association between early puberty and breast cancer.

Everyday chemicals can affect our health even before we’re born

Scientists have found that it's especially problematic when a developing fetus is exposed to certain chemicals. In studies on mice, prenatal exposure to the chemical bisphenol A (BPA) led to harmful effects that persisted over a lifetime. Specifically, mice exposed to BPA while still in the womb and in the earliest stages after birth had greater sensitivity to the hormone estrogen during puberty.
The authors of this study note that changes in estrogen levels are a known, central risk factor for breast cancer and that increased sensitivity to estrogen may be of concern.

 

Everyday chemicals can make it harder to fight cancer

For women already diagnosed with breast cancer, toxic chemicals can do further damage. For example, a number of alkylphenols, chemicals found in detergents and cleaners, and BPA have been shown to stimulate faster division and growth of mammalian breast cancer cells.
BPA may also confer “chemoresistance,” which can make cancer treatments like chemotherapy and other anti-cancer drugs less effective. Scientists have found that breast cancer cells respond less well to chemotherapy treatments after having been exposed to BPA. This has serious implications for the chemotherapy treatment of breast cancer patients who have been exposed to BPA.
Unfortunately, almost everyone is regularly exposed to BPA. The Centers for Disease Control’s biomonitoring data reveals that BPA is present in more than 90% of Americans.

 

Why are all these chemicals in our bodies?

If we know these chemicals can cause us harm, why isn’t the government protecting us from them?
This year marks the 35^th anniversary of one of our most inefficient and ineffective laws: The Toxic Substances Control Act, or TSCA. Enacted in 1976, this law grandfathered in 60,000 already existing chemicals without requiring any assessment of their safety. There are now over 80,000 chemicals on EPA’s chemical inventory. Unfortunately, persistent deficiencies in TSCA have resulted in EPA being able to require testing on only around 200 of them.

For the great majority of chemicals available for use, then, we are left in the dark as to how they’re being used, who’s being exposed, and what harm they might be causing—whether we're talking about breast cancer or other conditions, such as obesity, infertility and Alzheimer’s, for which evidence is also mounting that links them to chemical exposures.

 

We need a better law: the Safe Chemicals Act

This fall, Congress is likely to take up the Safe Chemicals Act of 2011. This legislation would vastly improve TSCA, giving us much stronger protection against toxic chemicals. Chemical manufacturers would have to provide basic safety data on their chemicals. New chemicals would be assessed for safety before they are allowed onto the market and into the products we buy.

Unfortunately, effective chemicals policies weren’t available for the 40,000 women who died of breast cancer in the past year. But for those of us lucky enough to be free of it or fighting it, for the babies not yet born and the young girls who haven’t made it to puberty yet—we can and need to do better.
Tell your Senators now how important it is to support the Safe Chemicals Act.

 

Sources

I Colon, D Caro, C J Bourdony, and O Rosario. “Identification of phthalatePeurto Rican girls with premature breast development.” Environmental Health Perspectives. September, 2000; 108 (9): 895-900.
Labat, Vaillant, Sheridan, Pal, Wu, Simpson, Yasuda, Smyth, Martin, Lindeman and Visvader. “Control of mammary stem cell function by steroid hormone signaling.” Nature 2010.
LaPensee, Tuttle, Fox, and Ben-Jonathan. “Bisphenol A at Low Nanomolar Doses Confers Chemoresistance in Estrogen Receptor-α–Positive and –Negative Breast Cancer Cells.” Environmental Health Perspectives, February 2009. 117(2): 175–180.
White R, Jobling S, Hoard S A, Sumpter J P, Parker M G. “Environmentally Persistent Alkylphenolic Compounds Are Estrogenic.” Endocrinology Volume 135 No 1
Wadia, Vanderberg, Schaeberle, Rubin, Sonnenschein, Soto. “Perinatal Bisphenol A exposure Increases Estrogen Sensitivity of the Mammary Gland in Diverse Mouse Strains.” Environmental Health Perspectives. 17 January 2007.

Tie a ribbon...around my ...??? or "Awareness": Are you color blind yet?

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Talk is Cheap - Ribbons, Rallies & Campaigns...now that is profitable!

Pink Ribbon :
Meaning: Most commonly associated with breast cancer awareness, this ribbon is also a symbol for birth parents, and childhood cancer awareness (alternative color: light blue)

Yellow Ribbon :
Meaning: We've all seen this symbol used to support our troops, but it is also a symbol for MIA/POW, suicide prevention, adoptive parents, amber alerts, bladder cancer, spina bifida, endometriosis, and a general symbol for hope. A yellow ribbon with a heart is used to represent the survivors left behind after a suicide.

Pale Yellow Ribbon :
Meaning: This color is a symbol of spina bifida

Red Ribbon :
Meaning: Most commonly associated with the fight against AIDS and HIV, this ribbon also is a symbol for heart disease, stroke, substance abuse, MADD, DARE, Epidermolysis Bullosa, Reflex Sympathetic Dystrophy

Burgundy Ribbon :
Meaning: This color is a symbol of brain aneurysm, Cesarean section (worn upside down), headaches, hemangioma, vascular malformation, hospice care, multiple myeloma, William's syndrome, Thrombophilia, Antiphospholid Antibody Syndrome, and adults with disabilities

Purple Ribbon :
Meaning: This color is a symbol of pancreatic cancer, testicular cancer, thyroid cancer, domestic violence, ADD, alzheimer's, religious tolerance, animal abuse, the victims of 9/11 including the police and firefighters, Crohn's disease and colitis, cystic fibrosis, lupus, leimyosarcoma, and fibromyalgia

Lavender Ribbon :
Meaning: This color is a symbol for general cancer awareness. It can also be a symbol for epilepsy, and rett syndrome

Periwinkle Ribbon :
Meaning: This color is a symbol of eating disorders and pulmonary hypertension

Blue Ribbon :
Meaning: This color is a symbol of drunk driving, child abuse, Osteogenesis Imperfecta (OI), the victims of hurricane Katrina, dystonia, acute respiratory distress syndrome (ARDS), alopecia, Education, Epstein-Barr Virus, Save the Music, colon cancer (alternative ribbon color: brown), colorectal cancer (alternative ribbon color: brown), and anti-tobacco - particularly anti-second hand smoke (in Canada; alternative ribbon color: brown), I Love Clean Air/ILCA Campaign (Japan)

Dark Blue Ribbon :
Meaning: This color is a symbol of arthritis, child abuse prevention, victim's rights, free speech, water quality, and water safety

Light Blue Ribbon :
Meaning: This color is a symbol of childhood cancer (alternative color: pink), prostate cancer, Trisomy 18, and scleroderma

Teal Ribbon :
Meaning: This color is a symbol for ovarian, cervical, and uterine cancers as well as sexual assault, polycystic ovarian syndrome, and tsunami victims

Green Ribbon :
Meaning: This color is a symbol of childhood depression, missing children, open records for adoptees, environmental concerns, kidney cancer, tissue/organ donation, homeopathy, and worker and driving safety

Orange Ribbon :
Meaning: This color is a symbol of leukemia, hunger, cultural diversity, humane treatment of animals, and self-injury awareness

White Ribbon :
Meaning: This color is a symbol of innocence, victims of terrorism, violence against women, peace, right to life, bone cancer, adoptees, and retinal blastoma

Pearl Ribbon :
Meaning: This color is a symbol for emphysema, lung cancer, mesothelioma, and multiple sclerosis

Black Ribbon :
Meaning: This color is a symbol of mourning, melanoma, and gang prevention

Brown Ribbon :
Meaning: This color is an anti-tobacco symbol as well as a symbol of colon cancer (alternative ribbon color: blue), colorectal cancer (alternative ribbon color: blue)

Grey Ribbon :
Meaning: This color is a symbol of diabetes, asthma, and brain cancer

Silver Ribbon :
Meaning: This color is a symbol for children with disabilities, Parkinson's disease, and mental illnesses such as severe depression, bipolar disorder, schizophrenia, and anxiety disorders.

Gold Ribbon :
Meaning: This color is a symbol for childhood cancer

Jigsaw Puzzle Ribbon:
Meaning: This style of ribbon is a symbol for autism

Lace Ribbon:
Meaning: This style of ribbon is a symbol for osteoporosis

Pink and Blue Ribbon:
Meaning: This style of ribbon is a symbol for miscarriage, stillbirth, and infant death due to SIDS or other causes

We are being "clockwork oranged" with "awareness." Too many "causes" to be "aware" of with little substance forthcoming or sustained. Too many "baubles" on the retail shelf designed to manipulate our "concern" into retail therapy. Far far far too many awareness weeks, months, days...lifetimes. Eyes glaze over, brain shuts down, and all we are aware of is how fatigued we are about the myriad of ways we can die.

Personally, I am tired of the platitudes and pandering. Pom poms, feel-good rallies, and "Promises." It is time that the cancer industry put its dollars -- all of the raised dollars, into achieving tangible results. And less into the next profit-breaking marketing campaign. 

Breaking Pink "Promises"

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Carcinogens and Pinktoberfest...strange, yet profitalbe bedfellows.  ~TC

 

We’ll keep saying it: less talk, more action

Posted by caitlin on September 28, 2011 – 6:19 pm

By Karuna Jaggar, Executive Director, Breast Cancer Action

Two days after Breast Cancer Action publicly announced the findings of independent lab testing of Komen’s commissioned perfume Promise Me, we want to thank BCAction members and supporters who have sent almost 1,200 letters to Komen urging them to recall the product.

Instead of directly addressing consumer concerns about the ingredients in the perfume, Komen has responded to our action with more talk; but for all their explanations, they have yet to address any of our concerns.

Komen said they will not recall the product nor will they assure us that they will take the highest standards of precaution when it comes to women’s health. They did, however, talk:

• about the money the perfume will raise, noting a minimum of $1M to be donated by TPR Holdings;
• about the burden of responsibility for health safety resting with “intelligent consumers who make informed decisions about the use of products based on evidence;”
• about how much they care about research and prevention;
• about their intention to continue selling Promise Me.

Komen’s talk poses more questions than it answers:

• In highlighting the money raised by the perfume, is Komen suggesting that regardless of any health risks, the ends justify the means?
• How can consumers make informed decisions about Promise Me when Komen hasn’t publicly disclosed the list of ingredients on the product label?
• Is Komen really suggesting “buyer beware” by putting the burden on “intelligent consumers” to make “informed decisions”?
• How can Komen’s Medical and Scientific Affairs team conclude that it is okay to include Toluene in Promise Me when the International Fragrance Association bans its use?
• The FDA has notorious loopholes in its regulatory policies. In citing FDA guidelines as a resource on the safety of cosmetics and fragrance, is Komen unaware of the work by several national breast cancer organizations, many working in coalition with the Campaign for Safe Cosmetics, to close these gaping regulatory holes?
• If Komen is committed to funding research on causes and prevention of breast cancer, why do they allocate less than 4% of the $1.9 billion (yes, billion) they have raised to these areas?
• And finally, if Komen cares deeply about women’s health, about the prevention and cause of breast cancer, why won’t they commit to taking every precaution to ensure that the products they sell and endorse are safe by signing the Pledge to Prevent Pinkwashing?

Komen is asking women to trust their good intentions. In essence, Komen is asking us to look at what they say, not at what they do. To which we can only reply: Action speaks louder than pink. Komen talks a good line about “ending breast cancer” and ”funding research on prevention.” Komen has an opportunity to talk less and act more: recall Promise Me and sign the Pledge to Prevent Pinkwashing. It’s that simple.

"Promise Me"... PINK???!!!

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The gross contradictions of Pinktoberfest is highlighted by the inundation and exploitation of PINK; BREAST CANCER; and the collective personal anguish that more and more women (at younger and younger ages) are being diagnosed with breast cancer everyday. All for the sake of PROFITEERING. The industrialization of breast cancer into a lucrative (and savvy) business model is an affront not only to our intellect, but our physical well-being. Susan G. Komen is a marketing success! It feeds the Pink Beast on the one hand, while Promising a path to "salvation" from the same Beast on the other. Below is another example how Susan G. Komen smartly keeps itself a profitable entity by appealing to society's visceral fear of CANCER, and our desire "TO DO SOMETHING" (but only in a purely superficial and noncommittal manner because we have the attention span of a doorknob)...all the while ensuring its continued existence and relevancy.    ~ TC

By Karuna Jaggar, BCAction Executive Director
Posted by caitlin on September 27, 2011 – 10:57 am

Pinkwashing has reached a new low this year.

In the past, we’ve worked to demand accountability from companies who pinkwash in the name of breast cancer. We’ve seen pink alcohol. Pink buckets of fried chicken. Pink hormone-laden yogurt.
But we’re genuinely shocked to see a breast cancer organization marketing a product containing multiple chemicals categorized as toxic or hazardous. Susan G. Komen for the Cure commissioned and is now selling a perfume called Promise Me. This perfume contains chemicals that are a) categorized as toxic and hazardous, b) have not been adequately evaluated for human safety, and c) have demonstrated negative health effects. Please join us in demanding that Komen take every precaution when it comes to our health. When in doubt, leave it out!

Raise A Stink! by sending a letter to Susan G. Komen for the Cure asking them to stop pinkwashing!

Chemicals in Promise Me of primary concern include:

• Galaxolide, a synthetic musk that works as a hormone disruptor and is detected in blood, breast milk, and even newborns.
• Toluene, a potent neurotoxicant known widely as one of the toxic trio, has demonstrated a variety of negative health effects and is banned by the International Fragrance Association (IFRA).

When women’s lives are at stake we must adopt the highest standards of accountability. Komen is taking initial steps to reformulate the perfume “to remove any doubt about the ingredients.” But we’re still deeply concerned that while Komen reformulates, a product that is potentially harmful to our health is still in stores and in our homes. We urge Komen to immediately recall Promise Me.

Send a letter to Komen asking them to take every precaution when it comes to our health. Ask Komen to immediately recall Promise Me and sign our Pledge to Prevent Pinkwashing.

Thank you so much for taking action. Together we will stop pinkwashing because ACTION SPEAKS LOUDER THAN PINK! 

Random Sunday Thought (9/25/2011)

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

"What is important to you"?

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

Dear Loved One:

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

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

   

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~TC

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

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By: Dawn

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just so you are aware.

~Desiderata

Blogging vs. Journaling...Self-invasion of Privacy? Polluting the Atmosphere? Therapeutic?

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[Boo-Bee Trap] ... I understand it is a place for you to write some of your most personal thoughts. AND as you know that by posting on the Internet anyone and everyone is privy to those thoughts. An online Blog is very different from a Journal that’s tucked under one’s mattress that the maid or one of your kids discovers. A Journal Blog is not a bad thing. What is curious, and I use that word specifically, is how each of your readers interprets the postings, what projections they use to process the information, and how they respond. As a reader, my lens is myopic, (i.e. the literal word), and the words engage my multivalent imagination to create “other stories.” I read your Blog and “I feel despair.” Why? Because I can’t ask questions, I can’t ask for clarification, I can’t hear your voice, I can’t read your body language, and for all the other things I can’t do from 3,000 miles away.

Journaling under the pillows, hidden in mattresses, holding close the pain, the revelations, the frustrations and anger -- it is not satisfying. It does not provide the cathartic detoxing needed while I maneuver how I am going to manage a chronic disease. I believe that with this particular disease, cancer, I am not alone in this need. The universe, regrettably (and not because I don't like sharing the blog-os-phere, but because it is stark evidence of the proliferation of this epidemic) is replete with others sharing this need.

Why?

For me, it is simple and selfish. The the pain, the revelations, the frustrations and anger I feel - as the one managing cancer, cannot be shouted out loud. Nor can they be tamed to sit quietly as characters on a page. My friends and loved ones cannot and should not suffer the daily dose of the cacophony of feelings and thoughts that wash over and invade me. It is too much. And, nothing I would ask those near and dear to suffer. This is not because I underestimate their strength, but because I see so much pain and worry reflected back at me, coupled with their own need to be reassured that I am okay. At times, the latter is too much responsibility. This is the simple selfish part.

Journaling is good. I have advised many persons on the benefit of doing so. Journaling is a cathartic way of expressing and sorting out our thoughts. But journaling for me at this time is stifling. It keeps the SCREAM isolated inside my own head. And honestly, I am getting a headache!

So, read if you like. Don't if you don't. Add your nuggets of wisdom as you choose. And if you would like to SCREAM along with me, add your voice to the cacophony. After all, if you SCREAM and there is no one to hear you, than how can you be sure that you really made any noise? Boo-Bee Trap blog post dated August 16, 2009.

At the same time, the sheer weight of what goes on in my soul, mind and heart on a daily basis cannot be contained in pages stuffed in a drawer. There is no relief. The blog-os-phere is the immediate spectral universe that is at my disposal. I can write, vent, scream, cry, organize, distill and guilt-free "share" (aka unburden) in the time it takes to click a mouse. (hmmm...maybe the EPA should do an environmental impact study on the toxins I am purging...but I digress)  The images chosen for each blog is a peep hole into my state of mind when I am writing - reflective of my inner lens, or just base exhibitionism.

The "payoff", if that is the correct noun, is the varied responses and perspectives of my small readership. It breaks through the isolation and allows me to look through someone else's lens - whether that lens belongs to a stranger in Greece, Iceland, Latvia, Russia, India, France, the Ukraine, or dear friend 3000 miles away.

If all of this stuff were confined within conventional privacy, at least for me, the organic and chemical toxicity that I physically strive to manage would ultimately seep into and poison my soul.

WooHoo! Broke 10,000 Views on Boo-Bee-Trap

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BOO-BEE-TRAP has reached several milestones this summer:

• It has been providing me a cathartic conduit to journal for two years and running.
• It has seen me through two birthdays.
• It has seen me through two stages in my diagnosis.

...and...it has broken the threshold for 10,000 page views!!!!

I guess somebody is watching me in my fishbowl. . 


Pageviews all time history (as of September 18, 2011)
. . . 10,006*




*A moment of indulgence as I degrade myself as a WooHoo girl (think...How I Met Your Mother)

PSA: The Need for Systemic Change Should be the Real Call for Awareness in the Upcoming (dreaded) "Pinktoberfest"

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Executive Director Karuna Jaggar
By Karuna Jaggar, Breast Cancer Action Executive Director

In anticipation of National Breast Cancer Awareness Month this October, Susan G. Komen for the Cure’s CEO Nancy Brinker is calling for “less talk, more action” on breast cancer. I am struck by how similar the urged “action” looks to what the organization has been advocating for years. Komen’s “take action” emphasis continues to be on individual women getting annual mammograms.

At Breast Cancer Action, we bring a markedly different understanding of what action we all need to take—for ourselves, each other, our mothers, daughters, and granddaughters—to truly end the breast cancer epidemic. Komen’s faith in mammograms to bring the “end to breast cancer” is misplaced.

Mammograms don’t prevent breast cancer; they detect breast cancers that have already developed.

Mammograms don’t detect all breast cancers: according to the National Cancer Institute, “mammograms miss up to 20 percent of breast cancers that are present at the time of screening.” (In my situation...Invasive Lobular Carcinoma is not detected by mammograms - prior to my stage III diagnosis done via biopsy and MRI, my mammograms "detected" my 6.2 cm cancer tumor as "fibrous breast tissue - only.)

And unfortunately, there are plenty of women diagnosed, by mammography, with early stage breast cancer who end up dying of breast cancer.

More women getting more mammograms is not going to end the breast cancer epidemic. Neither, of course, are healthy diets and good exercise regimes. (I am woman who has been physically active all my life - dance 14 yrs; martial arts (29 years and counting); hiking; running; weight training; yoga, etc. I have also been a fruit, veggie and mostly pescetarian eater my adult life - and a vegetarian for 4 years in my youth.)

One of the ugly truths of breast cancer is that more than half of all breast cancers have no known cause and scientific evidence suggests that many cases are linked to exposure to environmental toxins. (This is the perspective and approach of my current naturopathic doctors - see "Recommended Provider" page.)

This means that, even if a woman follows Ms. Brinker’s call to exercise, never smoke, reduce alcohol consumption, and control her weight, she may still get breast cancer. (I have never smoked. My alcohol consumption leveled off to a "glass and half" in my early 20s. My top non-pregnant weight has been 105.)

Today the greatest risk for breast cancer is being a woman. In fact, a woman today has a 1 in 8 lifetime risk of getting breast cancer, up from 1 in 20 in the 1960s and 1 in 14 in the 1980s. (In short, there is no medical stereotype for breast cancer!)

We need actions that benefit the health of all women, not just ourselves.

• Action that does not assume synthetic chemicals are innocent until proven guilty.
• Action that begins with corporations and extends to our state and federal regulatory systems.
• Action that addresses the fact that too many women lack the health insurance of Ms. Brinker’s audience.
• Action that turns the tide on the inequities that mean African American women are more likely to die from breast cancer than their white counterparts.

Action that produces more effective, less toxic treatments, including for metastatic disease.

We need meaningful action to turn the tide of the breast cancer epidemic so fewer women are diagnosed with the disease and fewer women die from breast cancer. We will continue to take action to bring the systemic changes that will end the epidemic.

So if you are going to don the Pink Ribbon and run with the herd this coming October - do yourself and your loved ones a favor and be truly aware.  

Posting on the Fly

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I am sitting at Logan airport in Boston hoping my JetBlue flight is timely. The flight in on Friday was three hours delayed...sigh. I had the immense privilege of having a play date with a dear dear friend, who flew in from Philly to meet me in Boston for a long, late lunch. BTW - Tremont Street in Boston is a quaint neighborhood with local restaurants, gorgeous ivy covered brownstones, and corner markets that remind me of the Village in NYC. We had fabulous salads, a glass of merlot (me...no lectures from the peanut-gallery) and a true French version of a macchiatto. The restaurant: Aquitaine.

But, I digress.

Dear dear friend, who has known me since I was fresh out of undergrad - and who introduced me to "Fleet Week" in my city by the bay (San Francisco for all the lay people), complained that my blog left too much to the imagination. She needed more, in order to have a better understanding and feel for my journey. Her disgruntlement led her to hop on a plane to see me, feel me. Think, The Who and "Tommy." I am having a hard time seeing the negative of this situation. I am a selfish b*tch (LOL!)

Blogging in the moment, in a "fish bowl", RISKY.  
Hugging Dr. D. curbside at Terminal B, PRICELESS!

(I was in New England because I was moving my second daughter into the sophomore dorms at Dartmouth. Bittersweet.)

To DCA or Not DCA...That is the Burning Question

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Dr. "DCA"

Dr. Evangelos Michelakis 
Professor of Medicine, Vice-Chair of Research Department of Medicine, University of Alberta

Researcher of the month:

Nov 2010

Science excels in challenging traditional ways of thought. Dr. Evangelos Michelakis is an apt disciple – a medical researcher who shines at confronting scientific and clinical dogma to benefit medical progress.
His work straddles two seemingly unrelated fields, pulmonary hypertension and cancer, which have “more in common than you think,” he says. His pioneering work has contributed to emerging paradigms in both fields and lent credence to an 80-year-old theory of German biochemist Otto Warburg, who believed that the metabolic shift in cellular energy production that occurs within abnormal cells, now called the “Warburg effect”, is a cause – not effect – of cancer.

Tackling traditional thought

In 2001, Dr. Michelakis and colleagues at the University of Alberta began a series of laboratory experiments that led to important discoveries and innovative ways of thinking about pulmonary arterial hypertension (PAH). This rare but deadly disease afflicts women in the 30s and 40s whose 5-year survival rate is worse than for metastatic breast cancer.

They studied the effects of sildenafil (Viagra®) on PAH. This work led to a small clinical trial that showed, for the first time, that this drug is a safe, effective treatment for patients with PAH. The Heart & Stroke Foundation of Canada funded this groundbreaking work, which led to further studies by the drug’s manufacturer, Pfizer, and a new formulation of sildenafil (Revatio®) to treat PAH.

Dr. Michelakis and coworkers were also first to show that a cancer marker called survivin, which was thought to be found only in cancer cells, is heavily expressed in abnormal pulmonary arteries. This work, published in the Journal of Clinical Investigation (JCO), was one of the first comprehensive studies to show a link between PAH and cancer.

One discovery led to another. While investigated excessive cell growth in the walls of pulmonary arteries, Michelakis and his team discovered that the cellular powerhouse – mitochondria – in lung vessels differs from those in other arteries.

The mitochondria play several vital roles within cells. They generate energy, in the form of ATP, by oxidative phosphorylation – the combustion of glucose and other fuels by oxygen. They also act as oxygen sensors and control programmed cell death. This process, known as apoptosis, is suppressed in PAH – and cancer. Both diseases, Michelakis notes, are characterized by uncontrolled cell growth.
He and his team began to search for a drug that would target the mitochondria of pulmonary arteries to reinstate apoptosis. They came upon a substance called dichloroacetate (DCA). This small-molecule drug has long been used to treat congenital mitochondrial abnormalities – for so long, in fact, that it no longer has patent protection.

“We showed that the mitochondria in PAH cells in both animals and humans were suppressed. When we gave DCA, these mitochondria became active again. Apoptosis, which requires functional mitochondria, was reactivated, and abnormal cells within the walls of pulmonary arteries started dying, opening up the lumen and improving PAH.”

DCA works like a molecular scalpel, he explains, targeting abnormally growing cells in PAH without affecting normal cells in other arteries, which do not share the same mitochondrial changes.
This work was published in Circulation (2002, 2006), Circulation Research (2004), PNAS (2007), and Science Translational Medicine (August 2010).

Breathing new life into old theories

In 2007, Dr. Michelakis and colleagues published evidence from laboratory studies in Cancer Cell that showed mitochrondria are suppressed in cancer. They then showed that DCA could reactivate the mitochondria and reinstate apoptosis.

Their findings had a major impact. For the first time, there was proof that cancer actively suppresses the mitochondria to foster abnormal cell growth. This evidence challenged the prevailing dogma, which suggests that cancer is a disease of mutated genes, not a consequence of abnormal metabolism – and it reactivated an interest in Warburg’s belief that abnormal mitochondrial function is a cause, not effect, of cancer.

“The timing was right,” says Michelakis, “because the metabolic theory of cancer was being born.”
DCA inhibits a mitochondrial enzyme called pyruvate dehydrogenase kinase (PDK). This key enzyme is overexpressed in cancer cells. PDK deactivates the pyruvate dehydrogenase (PDH) complex of enzymes on the outer mitochondrial membrane. The PDH complex acts as a gatekeeper that controls the flow of glucose and other fuel into the mitochondrial powerhouse. Without fuel, the Krebs’ cycle cannot function and glucose oxidation does not occur. Apoptosis is shut down.

As a result, cancerous cells suck in more glucose to use in glycolysis – the anaerobic conversion of glucose into energy outside the mitochondria. By shutting down the powerhouse, they cannot produce energy as efficiently but, with apoptosis switched off, they no longer die. Eventually, the uptake of glucose increases to a point that fulfills energy requirements, while the mitochondria remain inactive.
DCA reverses this chain of events. It suppresses PDK and liberates the PDH complex. The mitochondria can resume normal functions, including apoptosis.

Since DCA has been used in the treatment of children with congenital mitochondrial abnormalities since the 1960s, it has a well-known safety profile. With no patent protection, it is an inexpensive medication.

The long, winding road to human trials

Without industry support, it is difficult to advance promising drugs from animal to human trials, says Michelakis. Since DCA had no patent protection, industry was not interested in funding clinical trials.
After fundraising, Michelakis began phase I trials of DCA in small numbers of patients with metastatic cancers at Alberta’s Cross Cancer Institute (CCI). The University of Alberta agreed to cover indemnity which is usually covered by industry sponsors. The Alberta Health Sciences also helped with a number of in-kind contributions. Then, with the cooperation and encouragement of the Director of Neurosurgery Kenneth Petruk, Michelakis’ team zeroed in on one cancer – glioblastoma multiforme (GM), a highly lethal form of brain cancer.

They conducted a clinical trial in a small number of patients with GM. Tissue samples from before and after DCA treatment showed that the small-molecule drug was making a difference.

“We showed that DCA was inhibiting PDK and activated PDH in the tumors of these patients,” says Michelakis. “There was actually some evidence of tumour stability or even regression.”

The results, published earlier this year in Science Translational Medicine (May 2010), once again rocked the scientific community. In addition to challenging scientific dogma about mitochondrial function in cancer, it showed that researchers could conduct human clinical trials without industry support.

The study has opened the door to further DCA trials. Michelakis’ team plans to conduct joint studies of DCA in breast, lung and brain cancer and PAH with several international centers, including UCLA medical school, Memorial Sloan Kettering Cancer Center, and Imperial College in London, UK.

The route less traveled

The biggest challenge in investigating promising small molecules is not learning to think outside the box, says Michelakis, but finding ways to overcome the obstacles that discourage researchers from performing human trials without industry support.

DCA is not a miracle drug, he says, but “it’s very important, because it has helped us to find a new direction. It is pointing the way to the development of better mitochondrial-activating drugs. There’s no question about it.” 

Diet and Cancer (...or WWKRD?)

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Below is a guideline provided my ND (Naturopathic Doctors) with regard to cancer and nutrition. In my situation, I have been following these guidelines for the majority of my adult life. All I can say is that if I hadn't been so vigilant, my health issues could have been a lot worse??? Or, I could have followed Keith Richards' guideline for health & longevity (a decade of heroin chased with his special recipe for bangers & mash).

Healthy Food Choices

Knowing what to eat can be confusing. Here are some basic guidelines that will help.

• Make sure that at least 60% of your plate, at every meal, is comprised of salad and/or raw or lightly steamed or sautéed, fresh vegetables.  (I have always been a broccoli, steamed asparagus, raw spinach fan. And don't get me started on berries.)

• Choose whole grain foods over processed grain products. Keep gluten to a minimum and replace pasta with quinoa or rice based products. (Always an Italian food fan, over the last decade I had replaced traditional pasta with whole grain pastas; love quinoa - both red and white. Trade Joe's has some good recipes; and brown rice rules. Indeed, I have my ancient grain and red quinoa curried salad for lunch today.)

• Include beans and legumes in your meals. Chickpeas, lentils, adzuki, white beans, black beans, limas and pinto beans are the easiest to digest. (Hummus has been a dietary staple of mine for 30 years. Can't say I am intimate with adzuki.)

• Incorporate nuts and seeds into your diet as an addition to your meals or as in-between meal snacks. (I am eating my sea salt and olive oil almonds as I type.)

• Reduce the consumption animal protein to 2-3 times per week. No processed meats. (I can't remember the last time I ate anything resembling processed meat. I am more of a pescetarian. Red meat is not on the menu - unless I can get ahold of buffalo; or if that cow has been a grass-fed organic moo-er all its life. Not a huge chicken fan due to the hormones in those old birds either. Yes there are organic options, but what do they feed those fowls?)

• Reduce your dairy intake to a minimum including milk and cheese. Almond milk is a protein-filled, nutritious alternative to cows milk. Dairy causes mucus buildup and has been linked to a variety of illnesses, from asthma to arthritis to Crohn's disease. (Two words: LACTOSE INTOLERANT...all my life.)

• Choose water instead of soda (diet or regular), fruit punch, sweet tea and other sugar-sweetened drinks. Drink lots of clean, purified water, all day long. Limit alcohol and caffeine intake to one drink per day maximum.  (I am chasing down my almonds with a litre of alkalized water; my alcohol intake is a glass and-a-half of red wine 1x per week; I started drinking coffee after age 40 (THANK YOU S.B.!) - and I am a one cupper in the a.m. kinda gal.)

• Keep vegetable oils to a minimum (Fav cooking oil is ALMOND oil)

• Remove sugar, as much as possible, from your diet. This includes drinks with sugar, white flour, white bread, cookies, candy cake, muffins, crackers, and chips. White sugar fuels cancer and Candida, spikes your blood sugar, taxes your im­mune system, robs you of minerals, is highly addictive and floods your body with excess insulin and IGF1, which stimu­late the growth of cancer cells. (NEVER been into candy or white flour-based foods. I do love my salt n' vinegar chips, however - but only 1x per month. [Btw, this peri-menopausal thing has me down to every 60-67 days and it lasts 10-27 days -- totally blows the chip craves!]) 

I am the last person to insist or advocate that the above guidelines be stringently followed. After all, I am NOT the poster-child for "Clean Holistic Living = Disease Free Life." WWKRD???