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Friday, December 10, 2010

Winter arrived in Kauai last night

Civil Defense called every three hours all night, warning everyone to stay put because of flooding. Time to stow the surf board, pack the fishing gear and poles. Big rain brings out the oopu in Hanalei Bay. As they say here, malama the aina, or get your butt back to the mainland. 



Thursday, December 09, 2010

Elizabeth Edwards, You're Better Off than these Church Members

Elizabeth Edwards, 62, died Tuesday six years after being diagnosed with breast cancer. I have a couple of thoughts about her death.   


The first one may shock you. I don't feel sad about it. 


Throw stones if you will, but don't you have a sneaking sense of relief when you read about a prominent person's death from breast cancer? To me, that seems natural. When you know someone personally, a sense of grief at their death is realistic. Otherwise, it's a put-on. Yes, I admired the woman, but I never met her.  I always feel like I dodged a bullet when I hear someone famous died from cancer. You're still here. I'm still here.  Let's go forward and be thankful. Someday we won't be, so there's no time to waste. 


My second thought is less selfish. I read that her doctors claim she died without losing consciousness and without pain. That happens very often, and I find it comforting. Death is a natural process, life always leads to death, and death always leads to life. (Or at least most people believe it does, myself among them.) For her children's sake, I wish she'd beat the disease, but I'm pleased she was able to remain herself until the end. 


One final thought: have you heard about the church in Kansas who plans to picket her funeral? Can you imagine the type of "Christian" who would show up at a grave-site with a sign saying: "God hates Elizabeth Edwards?" 


I'm going to conclude this with a few words from the woman herself, defending her decision to continue campaigning with her husband: 

"But you know, after all I've been through, I realize: You don't know exactly what life lessons you taught your kids until much later. You don't. And maybe the most important life lesson for them is for me to say, When bad things happen, you don't let them take you down. If I hadn't continued to campaign, I'd be sending the opposite message: When bad things happen, go hide. Do I know with absolute certainty we're doing the right thing? I don't. Having been through what I've been through, I hope people trust I wouldn't risk my relationship with my children. I think this is the right choice."

One tough woman. 




Monday, July 05, 2010

The Mommie Wars

There was a lot of snarling and barking in my house in Hawaii last week, and we don’t even own a dog.



The fighting (let’s call it intense marital negotiations) was over whose turn it was to entertain our five-year- old. My husband was trying to get his latest scientific paper out to IEEE; I was trying to finish a chapter in my next suspense/thriller. My daughter was reviewing our definitions of boundaries and writing all over them with orange and purple finger paint.



Several working mothers I know – the ones who hire nannies and drive off to work in designer suits every morning at 8:00 – get a lot done every day. As a writing Mom, I have a great office to write in, but I rarely get to write there. Instead, my writing gets done on a yellow pad of paper at the park, or in the laundry room near a pile of dirty clothes that dwarfs Mauna Kea. I create new characters while I'm cruising the aisles in Walmart. Work on my plot-line while I'm sitting mindlessly all Sunday afternoon at four and five-year-old's birthday parties with a lot of other parents who would give anything not to be there. I don't think this is at all what Virginia Woolf had in mind when she wrote about claiming a room of one's own.



Right in line with Mom’s Day, I have some advice to other writing moms or dads, or any person who work at home and has family obligations they can’t shirk.



Guard your time with your life, because a lot more is expected from women who work at home. Clean houses, free baby-sitting, long lunches with girlfriends and contributions to the school bake sale are for those who have "extra time" on their hands.



Learn to say “No,” and stop caring what other people think. Your life has to fit around the needs of this little person, until they are old enough to take responsibility to themselves.



These days I make zero accommodations for the gripes of those who don’t like the way I’m running my life. Except for one person—my daughter, to whom I have sworn never to turn a deaf ear. And I have another parental obligation as well, to turn my writing into a money-making business, because pesky necessities like health insurance and college tuition keep getting more costly.



Kindergarten starts for my daughter in two months—in Hawaii, it starts in July. I don’t know who is more excited: Carmen or myself. But strangely, I will miss these pre-school years because they have taught me a valuable lesson. I no longer judge other moms for their choices, or non-moms for their lack of understanding.



A final piece of advice to you if you’re a mom or a dad? Give it your best shot, one day at a time. That’s all any of us can expect from ourselves.



Posted by Cheryl Swanson, Death Game



The Trouble With Talent



have a bright daughter and I want her to succeed. I should tell her how smart she is, right?



That’s what 85 percent of parents think. But they’re wrong—according to the latest research. With Mother’s Day looming, this is a good time to focus on how we may be sapping our children’s motivation and limiting their future success. And—interestingly—our own as well.



According to a Stanford psychologist Carol Dweck’s recent book, Mindset: the New Psychology of Success, applying any label to our child, even a positive one, can be harmful. Telling a child they are “smart” instills a fixed mind-set and all the baggage that goes with it. Well-meaning words of praise can create performance anxiety and cause a child to give up quickly.



If I wasn’t a mother, I probably wouldn't have believed Dweck’s research. But a few months back I realized that my five-year-old daughter Carmen was throwing a tantrum when she didn't grasp new skills quickly. As an only child surrounded by doting parents and grandparents, Carmen has been told repeatedly how smart she is.



We told her she was smart because we thought we were helping to instill self-confidence. What we actually instilled was the rapid onset of frustration. When Carmen can’t master a new task instantly, she flings herself in a corner and shrieks: “I can’t do it!”



Her five-year-old friends (mostly from large Hawaiian families, where the children don't get praised for every tiny achievement) are much more likely to persist. When they can’t do something, they think they simply have not tried hard enough. Those children use their failures as fuel; they keep trying.



My husband and I are listening carefully to what we say to Carmen these days. We still praise her for her inherent goodness and let her know we unconditionally love her. But we no longer praise her talent or intelligence. Instead, we praise her for the work she puts into things and the way she concentrates.



Dweck’s research should be noted not just by parents, but by all who aspire to continue to be commercially successful authors. (Or authors at all.) The research bears directly on a problem we face every day. We’re talented, right? So how come the world isn’t beating a pathway to our door? How come we have to continually struggle to attract the attention of agents, publishers and readers?



According to Dweck, excessive concern about looking “smart” can keep us from making bold, visionary moves. If you’re afraid of making mistakes, your whole approach becomes defensive: "I have to make sure I don’t screw up."



I’m proud of our madten authors, because they don’t fall into this trap. M. D. Benoit, for instance, just did a week-long virtual reality launch of her new sci-fi, Synergy. It was a wild idea--and something she dreamed up on her own. Gloria Oliver is forever going to conferences—pressing the flesh and talking to her fans. Mayra Calvani , who writes fabulous dark fantasy, is trying something new by publishing a children’s book. (She’s already won awards for her children's short stories.) Joan Upton Hall publishes regional non-fiction, alternate reality fiction, writer's guides, you name it. Her latest project is PageTurners: a newsletter (full of contests and the latest information on 'page-turning' authors) that can be delivered to your e-mail. And then there's J. C. Hall. She's simultaneously writing and publishing two fantasy trilogies. Try that on for size!



Authors who fall into the talent trap simply don’t last. (Unfortunately, I know plenty of those authors as well.) Fear of not looking ‘smart' causes total writer’s block—which is really a kind of "learned helplessness." (We’re not doing what we’re capable of because of fear of failure.)



Dweck’s research is making waves in educational circles. She has launched a whole new field of educational psychology, focusing on how wanting to look smart might keep us from learning. According to her, intelligence is not fixed from birth; it can be developed and made to grow.



Yesterday, I spent five minutes trying to teach Carmen how to play jacks. Her hand is so small she can’t fit the ball and jacks into it Carmen explained to me that was why she couldn’t do it and started to throw a tantrum.



I put the jacks out of reach and went upstairs to make dinner. When I came downstairs, Carmen had climbed up the bookcase and retrieved the jacks. She was teaching herself how to play using both hands.



I was damn proud of her, but I snuck away and didn’t say a word.

Wednesday, December 09, 2009

Afraid of Breast Cancer?

BUST FREE WITH...
BUSTING LOOSE: CANCER SURVIVORS
TELL YOU WHAT DOCTORS WON'T

Available from Amazon and your local bookstores

Special offer for the holidays at http://www.cherylswanson.net/


EXCERPT

Why It’s So Good to be Bad

No matter where we are, the shadow that trots behind us is definitely four-footed.
-Clarissa Pinkola Estés, Women Who Run With the Wolves

She smiled, or I never would have met her.

She wasn’t smiling at me; she was smiling at her own wit in the pages of an article she was editing. The woman had great cheekbones and nice features ruled by huge blue eyes. In spite of what chemotherapy had done to her appearance, she looked younger than forty-two.

I said hello and knelt to pet the golden Labrador retriever dozing at her feet. I’d just finished a follow-up appointment and my rumbling stomach had sent me to a San Francisco dockside café. The tables were crowded with investment bankers and tech-heads discussing how to make a million bucks that afternoon. There were also a few patients undergoing cancer treatment at the nearby hospital—including Julia, who I soon found out was also a writer.

I didn’t plan to sit with Julia, partly because I am shy and partly because she was sitting in direct sunlight. Like me, her head wasn’t covered and I could almost smell the UV rays sizzling off her bald skull.

“Chemo is a bitch, isn’t it,” she said casually, as I stroked the Lab’s velvety head.

I’m not sitting with you, I thought. I’ll find a table in the shade.

“It feels good, doesn’t it?” She smiled a private smile.

“What feels good?” As if magnetized, my fingers kept rumpling the Lab’s soft fur.

Her smile got broader. “Hair.”

The Lab’s name was Riddles. Riddles’ owner snapped shut her writing notebook and asked me to join her. And I did, although you are never supposed to sit in the sun, no matter how good it feels, not in the middle of chemotherapy. Not only does chemotherapy treatment make the skin photo-sensitive, but if you’ve recently lost your hair, you’re exposing skin that hasn’t seen the light of day since you were a baby. And I had just lost my long hair—most of it literally blowing off my skull one day when I went outside, and the rest of it shaved off two days later.

But this was Julia and Julia did that to people. When you were with Julia, the rules didn’t apply. So I sat down with her and ordered pastrami on rye. We chatted about my novel and her series of articles on her father, who had been a southern poet of some note.

I ran into Julia several times after that. It wasn’t long before I found out that she was in a marriage that was more toxic than any chemotherapy. Her husband had reacted to her cancer by telling her that her she looked like a freak and her appearance disgusted him. When she burst into tears, he told her she might as well get it over with and die.

“No matter what, I’m going to live long enough to divorce that bastard,” she told me. “He’s been cheating on me because he thinks I’m helpless, going through chemotherapy. He’ll change his mind when my lawyer gets done with him.”

Starting divorce proceedings in the midst of chemotherapy is hardly an action a therapist would recommend. But I couldn’t help but notice that Julia found it liberating. She was the type of person who was not afraid to go into the darkness alone.

One thing I learned from during my treatment is that cancer makes good marriages better and bad marriages worse. I also learned there are lots of ways women empower themselves to get through the ordeal of cancer treatment. Humor works and so does faith and optimism.

So does consulting the dark side of ourselves.

I don’t mean turning into an avant-garde version of a character in Jacqueline Susann’s Valley of the Dolls. I don’t mean becoming a madwoman, getting into a fistfight with a saleslady, or staring down at the bottom of a whisky glass with cigarette smoke swirling. I don’t mean overeating for months, or dumping our work on someone else.

I mean not being afraid to walk away from someone who is brutal to us—even if that someone is our spouse. I mean valuing our own dignity and insisting that others not treat us cruelly.

Let’s be honest. Implicit in society’s definition of us as a “breast cancer victim” is the concept that we can be easily controlled. Breast cancer patients are sick, weak, vulnerable, and powerless—so the world thinks. At the hospital we’re expected to be passive and dependent “good patients,” who don’t rock the boat.

Dealing with the “cancer patient” stereotype can subvert a survivor’s attempt to conquer their illness. It can also give a woman who is struggling to get through a devastating illness a feeling of relentless, inevitable doom. Learning to release anger on the other hand can have great rehabilitation benefits. Righteous anger in the midst of cancer brings a great, wild joy at being alive.

What Julia taught me was that retaining our life in the midst of a crisis requires the ability to be dark, rebellious and full of “bad thoughts.” We have to give free rein to our self-protective instincts—no matter where they lead us. And even if those instincts, frankly, terrify us.

Julia’s husband refused to end his affair and he continued to abuse her. It took her almost two years, but Julia finally divorced him. Her chemotherapy infusions were useful to her, not just in curing her disease, but on an emotional level. Toxic material siphoned into her veins became toxic anger she funneled into liberating herself.

Julia’s marriage and cancer treatment ended about the same time and she’s made a good recovery from both. These days, she’s out there taking risks, enjoying being a “bad girl,” not sitting around the house ironing her husband’s shirts so he can look good when he sneaks around with other women.

“You can’t have everything,” she told me recently, with a wicked laugh. “But you can try. Oh, you can try.” And so Julia tries. And so should we all.

Julia is the wild woman of breast cancer and her numbers are legion. Like Julia, these women have something important and simple to teach us. Allow access to all parts of yourself—all the animals within, from lioness to lamb. Be all you need to be to survive. Be good, because that makes you happy. Be strong, because you life is just beginning, not ending. And don’t be afraid of your dark side. Because sometimes, it’s oh so good to be bad.

Monday, November 30, 2009

The True Value of Mammograms

Who ever thought up the word, “Mammogram?” Every time I hear it, I think I’m supposed to put my breast in an envelope and mail it somewhere. -Jasmine, breast cancer survivor

American women face a peculiar danger with mammograms. We risk succumbing to the notion getting regular mammograms somehow prevents breast cancer. “There’s almost, I think, a magical belief that getting regular mammography may prevent breast cancer. This is something I’ve experienced myself as a patient,” said Dr. Susan Bennett, of Brigham and Women’s Hospital, the teaching hospital of Harvard Medical School. “Sort of this ‘clean-bill-of-health’ concept that it (a mammogram) will give you a sort of ‘inoculation’ against the disease.”

When a respected doctor ‘fesses up’ like this, it’s time to start rethinking the purpose of mammographic screening. Not only do mammograms not prevent cancer, mammograms completely miss 15 to 25 percent of breast cancer. And 80 percent of what looks suspicious on a mammogram turns out not to be cancer, according to the 2005 American Cancer Society Report.

Mammograms are particularly ineffective when women have dense breasts. A mammogram depicts dense tissue as white, so a dense breast will produce a predominantly white mammogram. Breast masses are also white. Picking out a small white spot (which may be cancerous) against a predominantly white background is like finding a snowball in a blizzard. The inability to identify cancerous masses in dense tissue is what makes mammograms so notoriously inaccurate on younger women.

Breast cancer is not a textbook cancer, where indications are clearly given and treatments are well agreed upon. A woman can think she doesn’t have breast cancer because she’s not fully informed about all the possible warning signs of breast cancer. She may have a symptom that usually signals a benign situation, but in her case it signals a problem.

There is strong evidence that routine mammography for women in their 50s and older reduces the breast cancer death rate, but the benefit of screening women in their 40s remains a subject of intense medical dispute. Recently the National Cancer Institute stopped advising routine mammograms for women under 50, however the American Cancer Society advises women to receive screenings in their 40’s. Outside the United States (in Canada and most European countries), yearly mammograms are generally recommended only for women above the age of fifty.

There are things we can all do to get the best out of mammograms—however imperfect they are as a screening method. Try to go to the same facility every year. If you can’t, make sure the new facility has copies of your old mammograms. Doing so will help avoid false positives and make it easier for changes in your breast tissue to be quickly detected.

In addition, insist on getting the results of the mammogram in writing. Most facilities will mail a report, but don’t assume everything was okay if you don’t receive one. Contact the facility and request the report be mailed.

Finally, don’t fall into the trap of relying strictly on mammograms. Be sure to get a yearly clinical breast exam and keep alert to any changes in appearance or feeling in your breasts. Mammograms save lives, but if a breast lump is felt, a negative mammogram is meaningless. The woman can still have breast cancer.

Excerpted from Busting Loose: Cancer Survivors Tell You What Your Doctor Won't by Cheryl Swanson

Monday, November 02, 2009

Busting Loose: Cancer Survivors Tell You What Doctors Won't

Ignorance and Poverty Are Carcinogens (Excerpt from Busting Loose)


Socioeconomic factors, such as access to healthcare, education and income—and not race—are predictive of how likely a woman is to die from breast cancer. -Chaundre K. Cross, MD, of Harvard Medical School


Impoverished women are often blamed for turning a blind eye to cancer symptoms until it’s too late. Sometimes these women don’t know anything about breast cancer. Others simply don’t have a doctor. Unbelievable as it seems, both still happen.

In addition, impoverished women often won’t visit a medical office until they are too sick to be helped because they believe a doctor won’t listen to them. When the self-esteem is injured by poverty and lack of opportunities in life, it’s easy to assume that authority figures (such as doctors), will shame and ridicule. It makes complete sense, on one level. Criticism and ridicule have followed these women all the days of their lives—so why should they believe cancer will change anything?
In the comparatively wealthy area of San Francisco where I used to live, 80 percent of breast cancer diagnoses are made in the early stages. Go north ten miles, to a neighborhood like ghetto-ridden Hunter’s Point, and only 40 percent are early stage cancers. The mortality rate is much higher in these neighborhoods, mostly because the disease has advanced further before treatment.

This holds true all over the United States and the problem gets worse as the disease progresses. Those who are under-treated for cancer pain fall into one of two groups: racial minorities and the elderly. There are medications available to help these patients. But they don’t get them or even hear about them. Many also receive sub-optimal treatment, to the point where their chance of survival is minimal.

Most women who live in poverty are high achievers and have more inner strength—need I even say this?—than a hundred wealthy women. They don’t employ others to manage their homes or children; instead they are typically the sole caretakers of a large, extended family. In particular, impoverished minority women are the ultimate earth mothers, taking in their terminally ill father, grieving the untimely death of their mothers, while surviving job loss and depression. (For one of my friends, all that happened before she reached age twenty-seven.)

We live in a world where the voices of the poor are seldom heard. Where minority women have to plead and scramble for every crumb of attention. It’s no wonder these women fear being ignored or considered a whiner or complainer if they ask a doctor to check on something as “apparently commonplace” as a lump in their breast?

The upshot of this unequal situation is that social and economic status is one of the biggest factors in determining breast cancer survival. For example, African-American women have the highest death rates from breast cancer of any ethnic group in the United States. But research shows that there is nothing in their genetic background that causes the discrepancy. In fact, black women are actually less likely to be diagnosed with cancer than Caucasian women. And when African-American women receive appropriate medical treatment their survival rate is at least as good as that of Caucasian women. No, it is the disparity in the time of diagnosis and treatment afterwards that causes the difference in mortality rates.
The terrible impact of poverty and lack of education on breast cancer mortality impacts women from all cultures. In the Hispanic community, promotoras often try in vain to help women become less secretive about breast lumps. These health educators focus on Hispanic women of lower socioeconomic status, because among these groups a breast self-exam is often considered improper. In addition, Hispanic women who have entered the country illegally often fear they will be reported to immigration if they seek medical help in the United States. The result is that the death rate from breast cancer is rising faster for Hispanic women than for any other female ethnic group.

Organizations such as the Susan G. Komen Breast Cancer Foundation are putting millions behind the effort to reduce the inequalities in screening and treatment access. A national program offered by the YWCA (Encore Plus) reaches out to women who face obstacles to breast and health services. Encore provides free mammograms, advocacy and referrals, as well as information and support services for breast cancer survivors in English and Spanish.

In addition, the U. S. Centers for Disease Control and Prevention (CDC) runs the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). The program provides breast and cervical cancer screenings and treatment to low-income women. All 50 states offer these services NBCCEDP, since 2000 when the Breast and Cervical Cancer Treatment Act passed. If a woman gets a mammogram through this program, and it turns out she has breast cancer, the NBCCEDP can pay for her treatment, too. And as of May 2004, all 50 states and the District of Columbia have passed legislation to provide free treatment through the program as well.
To get breast cancer care through the program, you must: get your mammogram through the CDC NBCCEDP and need treatment for breast cancer (You qualify if your mammogram shows a pre-invasive condition, too), not have health insurance that covers breast cancer care, not qualify for the Medicaid program in any other way, be under age 65 (so that you can't get Medicare), and be a U. S. citizen or a "qualified alien."

There are additional programs and organizations listed in the “Helpful Organizations Glossary,” at the end of this book. Many programs offer free medicine, free long distance travel, free or low-cost care at certain centers and free breast cancer screening. Programs such as these are trying to reduce the disparity, but much more could be done. Equal access to quality breast cancer care remains a huge problem.