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Posts with tag Truth

Read This: What You Don't Know Can Kill You

WOW, what a book -- a perfect guide for those just embarking on a medical journey and a valuable resource for people like me -- already surviving a major illness -- who wish to better manage their health care for all of time.

Author Laura Nathanson, MD, wrote What You Don't Know Can Kill You: A Physician's Radical Guide to Conquering the Obstacles to Excellent Medical Care in honor of the husband she lost after a series of misdiagnoses and for everyone wishing to prevent such tragedy in their own lives.

Nathanson offers readers techniques for identifying signs of misdiagnosis and misleading analysis of symptoms. She shares tips for preventing medical miscommunication, keeping safe in the hospital, and choosing health care plans without falling into the uncovered services trap.

The allure of this book is the easy, non-medical approach Nathanson uses as she urges everyone facing the medical world to take charge of an often inpenetrable system. For the patient who is no stranger to this world, Nathanson's words will ring abundantly true.

"When I look back on that long period of delayed diagnosis and how we were then and later bounced around from one medical specialist to another, the image that pops into my head is that of a slightly mad, grotesque volleyball game -- with the patient as the ball," she writes.

For the patient new to medical confusion, Nathanson's words will impart volumes of truth.

"Here's what I've learned, and what you must learn if you wish yourself and your loved ones to survive a bout with serious illness," she reports. "No matter who you are, physician or not, lucky or not; no matter how rich, famous, successful, good-looking, innocent, kindly or powerful; no matter how close and trusting the relationship you have with those providing your medical care -- you cannot rely on today's medical system to keep you healthy, safe and alive."

Amen.

Exotic dancer donations rejected by cancer organization

I guess I've just assumed that breast cancer organizations happily accept every donation they receive and joyfully funnel all charitable gifts into their noble endeavors. I mean, without money and research and programs and services and education, where would we be? We'd be uninformed and lagging behind the force of this disease instead of gaining momentum on its trail. That's where we'd be.

Now, I've never assumed these organizations accept money obtained through illegal measures. But I've also never assumed they'd turn away money just because it came from a group of women whose profession and means of fundraising might be considered unacceptable. I suppose I shouldn't make assumptions. Because I seem to be wrong on all accounts.

The Breast Cancer Society of Canada has officially rejected a donation from a group of Vancouver strippers because of the controversial nature of their fundraisers. Exotic Dancers For Cancer these women call themselves, and for four years they have been raising money in honor of another dancer who lost her battle with terminal cancer.

Trina Ricketts, founder of the exotic dancer website nakedtruth.ca and recipient of the letter rejecting the donation, is shocked that people consider this contribution dirty money. And she is so bothered by this unfair judgment that she has been contacting the media and outting the Breast Cancer Society of Canada's discrimination practices. Her protests are working.

In a supportive turn of events, Ricketts has been met with an overwhelmingly positive response -- and she now has several organizations willing to accept all donations she wishes to offer.

This story is not nearly as simple as presented here. It's so much more detailed and touching and moving when told by Ricketts herself -- who happens to share her inspiring journey right here.

CORRECTION: Trina Ricketts reports that she did not seek out the media to out the Breast Cancer Society of Canada.

"The decision to go public was not in the interests of outing the Breast Cancer Society of Canada, but rather to seek out charities that would be willing to accept our donations," she said.

Suzanne Somers: breast cancer survivor going her own way

Breast cancer survivor, actress and anti-pharmaceutical advocate Suzanne Somers, author of Ageless: The Naked Truth About Bioidentical Hormones, suggests that if she had it to do over again, she would not undergo radiation treatment for breast cancer. During an interview Somers shares information on bioidentical hormones with The Desert Sun's Bruce Fessier, Somers is quoted as saying, "The whole time I was lying on that radiation table and I was so sick from it, I kept thinking, isn't it radiation that gives us cancer? I couldn't get that thought out of my mind."

At the time of her breast cancer diagnosis, Somers researched Iscador, a mistletoe extract, and chose to include the alternative therapy as part of her treatment. Somers said she refused to give up her hormones, insisting that she knew more about hormones than the doctor treating her for cancer.

Somers has critics in the medical and pharmaceutical communities, and perhaps rightly so. Manipulating hormones with bioidentical hormone therapy is not nearly as simplistic as she makes it sound, nor is cancer.

In her defense, while she does hold some unorthodox beliefs about health and cancer treatment, she readily adds that her approach to health is not something she advocates for everyone. Even with that caveat, people must be interested in what she has to say, as most of her books become bestsellers. Without a formal medical education and scientific expertise to back up what she has to say, I am not certain why so many seem to be listening.

I understand cancer is a scary diagnosis, and current treatments including chemotherapy, radiation and chemoprevention drugs are an inexact science. Not everyone diagnosed with cancer is cured. But cancer is also not a disease that allows the patient a great deal of time to experiment with various treatments.

As a breast cancer survivor, with a keen interest in cancer and cancer treatments, I believe there is a place for some alternative treatments. I also believe, in time, that some of the current conventional treatments will be replaced with more effective treatments. I am relatively certain that Suzanne Somers is a lovely woman. However, I try to chose my authority figures and the experts whose advice I value very carefully. Your thoughts?

Bearing Witness: A photographic trip down memory lane

Photographer Sharon Seligman's images are inspired by her personal journeys. She photographs people and birds and residential communities. She also captures the journeys of women enduring breast cancer. Her work speaks of the human experience. It speaks of her own experience. It speaks volumes.

Bearing Witness: Beyond the Surface of Breast Cancer is one of Seligman's portfolios. It's a photographic trip down memory lane, depicting self-portraits of courageous breast cancer survivors. Seligman tells her own story in words that border the left side of each portrait. Captions to the right of each black and white photograph offer a glimpse into the life of each woman whose being is displayed in raw form, for all to see, for all to contemplate, for all to appreciate.

And then in another portfolio, Seligman offers more photographs, more visions of the breast cancer experience.

Seligman aims to share the physical changes that come from breast cancer, to project the inner truths. Clearly, she is right on target.

Jingles and jangles brighton third year of survival

I am jingling and jangling with charms around my wrist once again. Ever since I was diagnosed with breast cancer, my friend Nicole has sent me a Brighton breast cancer bracelet. My very first bracelet arrived in 2004, and I wore it proudly. My second bracelet arrived in 2005 and took the place of the first. And now, as I enter my third year of survival, my 2006 Power of Pink bracelet dangles from my arm.

This year's bracelet features a heart-shaped locket. Other charms -- designed to represent stepping stones to recovery -- feature key survival terms. Brighton tells it like this -- "When we accept, we open the door to trust and find love that will heal. Along the way, we learn to be the inspiration." And there are still more charms -- a breast cancer awareness ribbon signifying a fight for the cure, a four leaf clover to assure luck is on our side, silver beads for richness, clear crystals for truth and purity. And still, there are more.

Brighton recommends we all make a difference in the breast cancer crusade. Some may choose to chip in by contributing financially. Some may volunteer. Some may lend a sympathetic ear to others in need. Some may purchase and wear the 2006 Power of Pink bracelet -- proceeds benefit breast cancer research -- and this one simple act will send an empowering message to women everywhere.

16 common myths about breast cancer ... and I say

How do we learn what we believe to be true? For the most part, we start out learning as a result of parental explanations, classroom study, schoolyard conversations, from conclusions based on personal experiences and what we read in the news. Some of the facts turn out to be myths.

One day, some of the debunked myths will be found to be not myth but truth because knowledge is not static and continually morphing as more is discovered about how things work. As it stands now, from what we know now, the University of Michigan Comprehensive Cancer Center has published 16 common myths about breast cancer. Here is a brief overview.

Continue reading 16 common myths about breast cancer ... and I say

Hurricane Voices raises consciousness, incites public action

I love the terminology used by those behind the scenes at Hurricane Voices. This is where I first read the words breast cancer dancer and where individuals have gathered to advance the rebellion against breast cancer. The content on this site is powerful, edgy, and truly inspiring -- it incites public action. And it makes me want to jump up and do something -- now. To break down the barriers to progress in pursuit of the causes and cures for breast cancer -- which is the whole purpose of Hurricane Voices.

Hurricane Voices began because of one woman -- Lois Egasti, a wife and mother living with metastatic breast cancer. Lois, who passed away on April 15, 2003, knew she was not alone and felt the need to take a stand against the disease. So she put her urge into action and formed this not-for-profit organization. And in just four years, a great community of voices emerged -- voices that have helped raise support and participation in far-reaching programs and events.

Hurricane Voices offers on its website a family reading list, a regular newsletter, an empowering overview of breast cancer and its statistics, and a sampling of various myths surrounding breast cancer. Hurricane Voices provides direction for involvement in unique conferences -- such as When a Parent Has Cancer: Strengthening the School's Response which helps school systems support families affected by parental cancer and Breast Cancer: Truth & Consequences, a conference that challenges the status quo concerning breast cancer. Hurricane Voices initiates thought-provoking public awareness campaigns and strives to inform the public that the disease we call breast cancer is a very serious illness.

Every day, more people are being diagnosed. Every day, more people are dying. Yet we are not beating this disease -- in fact in the time it takes to brush our teeth or drink a cup of coffee, another person has died of breast cancer. And this is what Hurricane Voices wants us to know. This and the fact that well-meaning, misconstrued survival rates in the 90 percentiles only extend for five years. And five years is just not enough.

Powerful -- that's what Hurricane Voices is -- powerful. And each of us can contribute our own power to this organization by becoming a Hurricane Voice. So speak up -- by simply clicking here.

Kindergarten milestone sweetened by bitterness of cancer

I don't take for granted that I am alive. I am fully aware of it, consciously grateful for it, continually amazed by it. Before I was confronted with breast cancer, I still knew I could die -- in a car accident maybe -- but I thought chances were pretty good that I would make it to a ripe old age. Death was never at the forefront of my mind. I had no reason to believe that life could be snatched from me. And because of this, I am sure some pretty important moments slipped by me, virtually unnoticed. But now -- after a breast cancer diagnosis, surgery, chemotherapy, radiation therapy, and then more therapy, I realize life is not a guarantee for anyone. Me included. Even at age 36, I am not safe. I feel confident about my future -- and I believe cancer has left my body -- but my life has been threatened like never before. And that makes me wake up and take notice -- really notice -- the moments that are too important to take for granted.

My first baby boy starts kindergarten today. Before cancer, this still would have been a monumental day for us both. But now, after cancer, it's even bigger. Because I know of several moms who did not survive cancer long enough to see their children walk through their first classroom doors -- moms who thought, like me, that they would surely beat cancer and would see their kids off for every first day of school. So I am lucky to have made it to this day -- to witness the wonder of my sweet, shy, sensitive, challenging, demanding, loving boy as he leaves the comfort of home for the real world.

Two days ago, my littlest guy said, "Mommy, I love you and want to keep you forever." Joey -- the boy whose wisdom should guide him right through his first day of school -- said, "Danny, you can't have mommy forever. One day she will die, and you will never see her again." Fortunately, his harsh meaning was lost on three-year-old Danny who kept playing with whatever toy was occupying him at the time. But his meaning was not lost on me. He spoke the truth. And so I plan to soak up the kindergarten moment this morning -- and photograph it and write about it and cherish it for my days to come. And in two years, I hope to do it again with Danny as he starts off on the same path. With me by his side.

Memories of long-lost hair remain fresh, familiar

The topic of my hair is often the subject of conversation -- and is a constant reminder that this brown curly hair I have covering my head is nothing like the straight blond hair I was born with, grew up with, was known for. Because my little boys have white blond hair, I am consistently asked by strangers, "Where did your boys get that blond hair?" "From me," is what I want to say because it's the truth -- but that would make no sense to anyone who does not know me, anyone who does not know that my hair -- that once looked much like my boys' hair -- was lost to chemotherapy and returned shockingly different. So sometimes I just chuckle in wonder with these strangers who may not expect an answer anyway. Or I tell them the story -- if they seem to really want in on the details of the mystery. Most people are surprised that my hair grew back like it did. I am not surprised -- I was warned that it might happen -- although it is still a startling discovery each time I look in the mirror, each time I look back at photos, each time I see gray hairs emerging through my dark hair -- gray that only slightly showed up in the midst of my blond locks.

The memory of my blond hair keeps popping up. My husband told me the other day that he had a dream about me -- I was in a restaurant, at a table, by myself. He was walking toward me. And I had blond hair. The rest of the dream is insignificant. The blond hair is significant. And the other day, I pulled my brush out of my purse. It hasn't been used in more than a year -- because I don't brush my curls at all -- and at the base of the brush, wound around the bristles, were long blond strands of hair. My blond hair. My old hair. The same hair I showed my friend who visited from Ohio last week -- the hair that was once on my head, was cut off in preparation of the great fallout, and is now kept in a ziplock bag.

I like my brown hair. I like my curls. But I miss my blond hair. I am sad that I no longer match my children, that I don't look like the bride in my wedding photo, that I will attend my 20-year high school reunion in two years and will wear a photo name tag that looks nothing like me. I like the familiar -- which is why I never wanted to show my bald head, why I covered my head with blond wigs and hats to keep my appearance as close to normal as possible. And then in a strange turn of events, my hair grew back in an unfamiliar fashion -- and somehow the question, "I see where your boys get that blond hair" flip-flopped into "Where did your boys get that blond hair?" It is all still new to me. I know one day it will become familiar and normal and not such a big deal. Some day. I hope.

A simple truth, simply stated: Fun is good for the body

We just had a family water balloon toss -- me, my husband, and our two little boys. Little hands helped fill tiny balloons that were tossed and fumbled and rolled all over our sidewalk and driveway. Our game resulted in wet clothing and wet hair and lots of laughs. And when we walked inside to prepare for dinner, Joey -- five years old -- said, fun is good for the body. I told him that he is so right -- fun is good for the body, And this one fact really needs no scientific proof or validation -- although I'm sure research is out there to support this simple truth. Fun is simply good for the body. And anyone who has felt the aftermath of fun knows what I mean. It sends good vibes through the body, it relieves stress, it refreshes and recharges, it lightens the load.

So try to incorporate some fun into your weekend -- organize your own water balloon toss, fly a kite, take a bike ride, go rock climbing or sailing or swimming. Whatever you choose, consider it a gift to your body. Celebrate yourself. Celebrate life. Celebrate Independence Day. Set yourself free and enjoy all the moments you have at your disposal. And if you like what you feel, try having fun every day.

Outta Body Mommy blogs attempt to stop smoking

I first discovered Outta Body Mommy Deborah when we were both blogging in the AOL Journals community. I was in the middle of redecorating our home and she was in the middle of building a brand new home. Deborah had posted so you want to build a new home? some of the tips I learned when building a house, and before I got to tip twenty I was reduced into tears of laughter. Here was a woman who understood the intricacies and monumental frustration of remodeling/building a dream home and could take it all, wrap it up in a blog post, and make it all seem easier to handle. She has a way of taking the daily -- the mundane -- the foibles of being imperfectly human living in an imperfect world -- and transform life with her unique perspective into something you can laugh at, understand and finally accept. You claim and wholly own the frayed and tattered edges of how things really are as opposed to how you wish or imagine. When Outta Body Mommy moved to Blogger, I followed the thirty-something mother of three as she enrolled as a full-time college student.

Deborah and her blog have moved again, settling in over at Meredith Vieira's Club Mom, where she has been hired to blog her effort to quit smoking. She knows it's bad for her health and sets a bad example for her children. But in the usual Outta Body Mommy blog style, she is tackling smoking with the same personal voice in writing she has applied to every other aspect of her life. It won't be politically correct, it won't be sugar-coated, she won't write to gain the approval of anyone, and as a result, it will be real. Outta Body Mommy Deborah begins with meet me in the garage.

Truths and half-truths in research news

Mike Adams starts Lying with statistics: How conventional medicine confuses the public by posing this question, "Which drug would you rather take? One that reduces your risk of cancer by 50 percent, or another drug that only eliminates cancer in one out of 100 people?" He believes most people would choose the drug that reduces the risk by half.

But both of these choices refer to the same drug and the same outcome. Curious? Here's how Adams explains it. Let's say a new breast cancer drug is being tested and there are 100 women in the clinical trial. At the beginning of the trial, two women are expected to get breast cancer. The other 98 women are not even expected to get breast cancer. Just two of them. At the end of the trial, only one woman gets breast cancer. If you interpret the results of this trial by absolute risk, then the reduction of breast cancer is one woman out of 100. However, if you interpret the results by relative risk -- that out of two women only one got breast cancer -- then the reduction of breast cancer with the new breast cancer drug being tested is an incredible 50 percent.

Remember, at the beginning of the trial, the researchers hypothesized that two women would get breast cancer and since only one did get breast cancer -- one out of two equals 50 percent. Now, if you are a pharmaceutical company who wants to extol the virtues of this new experimental drug, which risk -- absolute or relative -- would you use? Especially if you are trying to grab the interest and support of financial backers and the public? Relative -- of course. It sounds better. And it's true.

However, if you want to discredit a drug or therapy, you would use absolute risk. You would refer to the therapy in a framework of absolute risk. The one out of 100 statistical outcome, as in, it doesn't work very well -- only one out of 100 showed benefit from use. Adams points out this happens all the time when conventional medicine refers to claims made by alternative therapies in say, herbal remedies. And it's true. Nothing about absolute or relative risk is untrue but each can give a vastly different impression of what is true. Before you read another health news headline about another research study or new drug, go read his commentary in its entirety. It will make you pause -- it will make you think twice -- it will prompt you to ask, "what are we talking here -- absolute or relative risk?"

Hacks vs Lab Rats: who is at fault for consumer confusion

Stephen Daniells, a journalist and scientist, has worked both sides of the fence, and as such, has as qualified a voice as any in addressing the controversial debate that rages between science and the media. Scurrilous accusations of journalistic conspiracy are made by scientists when it comes to the sensationalism media employs when reporting scientific research and medical news -- and the journalists equally complain that scientists use the same tactics when they pull out the most attention-getting part of a study while leaving out the better but less interesting facts buried deep within the research findings.

Both sides seem to be exploiting the other by manipulative means. According to Daniells, currently a food science reporter with a PhD in Chemistry from Queen's University Belfast who has worked in research in the Netherlands and France, suggests that all the shaming and blaming needs to stop. The relationship between journalist and scientist must be mended and developed amicably if science is to get a fair deal in the press. Ultimately, where this all leads is to consumers being presented with balanced and accurate science and medical news coverage. Daniells writes an excellent commentary with great examples to support his observations and conclusions.

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