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Sleepless in the Hill Country

Sunday, October 30, 2011

 

How many of us take a good night’s sleep for granted? For the first half of my life, I didn’t have a clue what it was like to lay in bed, desperately hoping for sleep. I always went to sleep within seconds after my head hit the pillow. Since then, however, sleep seems as illusive to me as finding Bigfoot in my backyard. While I know the root cause of my chronic insomnia, finding a way to fix it may be more impossible than turning lead into gold.<PREVIEWEND>

My first husband, Philip, was an electrical engineer, physicist, organic synthesis chemist and National Security Agency operative who couldn’t stop problem solving and was unable to get to sleep without taking Valium. Neither of us knew that the day he ran out of Valium would change our lives forever. We had no idea that after a few days without Valium, he would begin to rock back and forth and beat his head against the wall, or that it would land him in a straight jacket in a psyche ward.

The morning after Philip was placed in lockdown, I went to see him. His doctors were speechless. They’d never seen a case like his. Philip was fine and was demanding to be released. When I asked the doctors what they did after I’d left the night before, they told me they’d given him an injection of Valium. Giant light bulbs should have gone off for all concerned, but none of us had even a flicker. It was before anyone knew of the dangers associated with Valium. Philip was released and promptly plunged into the depths of depression and stayed in a darkened room for the next six months while I made excuses to employees and investors about his mysterious “ailment.” I wish I could say getting off of Valium was the end of his problem, but instead, it was the beginning of our nightmare.

Over the next year Philip saw two psychiatrists, who were both intimidated by his understated, matter-of-fact brilliance and wound up thinking Philip knew more than they did. One briefly put him on a lithium cocktail that gave him slurred speech, while the other one suggested he take a drink or two to relax him before bedtime. A drink or two eventually turned into mass quantities of alcohol, and in time, the fascinating Dr. Jekyll I married turned into the maniacal Mr. Hyde. Because I never knew what terrors the night would bring, I never felt safe to let my guard down and go to sleep.

When he got home from work, I tried to lay low in hopes he wouldn’t find something to pick a fight about. The fights seemed to give him permission to roar down the driveway, into the night, sometimes disappearing for days at a time, or he would go down to his chemistry lab on the first floor of our house where he would lock the door. For me, both actions were equally terrifying. How could I sleep when I expected either a phone call telling me he’d been in an accident and had killed someone else in the process, or that he’d accidentally do something in the lab that would blow up our house?

Some nights I’d crawl into bed and play possum. I was good at mimicking the changes in my breathing rates so Philip would think I was deep asleep. Most nights I laid there for hours until, if I was lucky, he passed out. One night, while I was in the bathroom, Philip fired a pistol through the bathroom door. Without hesitation, I opened the second story bathroom window and jumped, grabbing onto a nearby tree with one hand. The tree broke some of my fall, but I fell hard through the branches as they tore at my flesh.

Fast forward to men in suits who broke into our home and Philip’s lab while he was passed out in bed and I had to defend myself alone (from what country or government agency I never knew) his death, my involuntary time with the Honduran Military Commandos, my GI Jane journalist phase where I flew, drove, submerged in and landed on every piece of military equipment known to man and the subsequent boyfriend from Hell. It’s little wonder I continued to have trouble sleeping. Adrenaline was always coursing through my veins. I was perpetually on high alert for any and everything. Like a soldier who’d been to war, I was diagnosed with Post Traumatic Stress Disorder and began taking sleeping pills.

I was blessed when James entered my life. He was my lifesaver in every way possible. He loved and valued me unconditionally, and I no longer had to be what often felt like the sole survivor in a foreign outpost. But because I had been programmed for so long to be on alert, that it wasn't safe to let my guard down, my chronic sleep problems continued. Breast cancer, the death of James, the dissolution of his family, financial matters and my mother’s dementia have only made my sleep problems worse. Because a side effect of the long-term use of sleeping pills is poor memory, six weeks ago, I weaned myself off of the sleeping pills I’ve been taking for over 20 years and now, I can’t sleep.

I saw what happened to Philip. In some ways I’m the victim of his sleeplessness, but I know better than to let myself repeat his destructive behavior. I pray, exercise, do Breathwork and have just downloaded what I hope will be some helpful Guided Imagery pieces. This week I’m seeing a therapist I hope can help me “detox” from my life of chronic stress and learn to sleep without help. Forgive me for not commenting on other blogs or for being absent on Twitter and Facebook, but I’ve had my hands full. At this point, I want nothing more than to sprawl out on the floor like a big old sleeping dog.


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A Message From Komen

Sunday, October 23, 2011
A few months ago I wrote, “The Komen foundation and its awareness campaign has come to symbolize our nation’s high profile effort to eradicate breast cancer, yet many critics are wondering if Komen has careened off course.” It’s now October, “Pinktober,” and the voices of dissent continue to rage against Breast Cancer Awareness Month’s endless stream of pink products. While Komen is not responsible for every pink item sold in the name of breast cancer research, Komen is the big dog on the fundraising block and has taken the brunt of the breast cancer community’s criticism. Many consumers are no longer confident Komen, or their pink product partners, are transparent and accountable for monies raised in the name of breast cancer research. Others wonder if this sentimental sea of pink has overshadowed the original purpose of the campaign: a cure for breast cancer. Regardless, neither bodes well for future fundraising.

In an attempt to help Komen and the breast cancer community see one another’s point of view, I have invited Leslie Aun, National Director of Marketing and Communications for Komen for the Cure®, to address the anger and concerns of the breast cancer community. Perhaps I’m naive, but my hope is that this will be the first in a series of open dialogs with the goal of uniting, on common ground, while voicing our disagreements and working, together, to implement clearer fundraising and search for the cure mechanisms.<PREVIEWEND>

While Komen and the breast cancer community has numerous disagreements, Komen has raised significant funds for breast cancer research and has made breast cancer awareness a household phrase. I think everyone will agree the awareness movement has careened off track, but I want us to be mindful we “don’t throw the baby out with the bathwater.” This forum could be a unique and important opportunity for all of us to effect positive changes within the pink community, but we must work together and approach this dialog with the best of intentions. I hope we don’t use this as a forum to beat one another up or to be defensive, but to brainstorm constructive approaches to more transparent and accountable methods of fundraising for, and funding of, breast cancer research.

As far as the mechanics of this first forum, Leslie Aun will write something in response to the Pinktober backlash. Readers, I hope you will use the “Comments” section of this blog post to reply to Leslie and Leslie, you comment as well. I am only the moderator. No one has attempted to bring both sides of the breast cancer fence together until now. In a perfect world, we would be seated in the same room, but every first has to have a start. If this forum is deemed a successful first “toe in the water,” perhaps we could move our dialog to Facebook, Twitter or Skype.

Leslie, I give you the floor……

From Leslie Aun, Director of Marketing & Communications, Komen:

Yes we know that some people feel there is pink overload. But as long as a woman dies of breast cancer every 74 seconds, we don’t think there is enough pink. And despite the criticism that we often hear, most people are very comfortable with the amount of pink they see. In a recent study we conducted of the general public, 87% said there is not too much pink, while 85% say they are more likely to buy a product or service if they know it will benefit the battle against breast cancer.

In terms of Susan G. Komen for the Cure, that pink represents hundreds millions of dollars that go directly to fighting breast cancer. We funded nearly $70 million in research this year alone (including 18 grants looking at the causes of breast cancer) and another $93 million in grants to educate and provide help to low-income women in thousands of communities across the U.S. who are uninsured and don’t have resources for basic medical care, much less cancer care. Women who can’t afford things like wigs and co-pays and trips to the doctor—not to mention groceries and childcare. Despite those efforts, there is a tremendous amount of need that still goes unmet. It would be wonderful if we could raise that money by direction donations, but despite best intentions, not everyone will (or can) write a check, and will support the mission through their purchases. So we’re not going to apologize for the pink.

For those who say there is already plenty of awareness of breast cancer—sorry, again we must disagree. Not when women are still asking us if underwire bras cause breast cancer or when huge numbers of women fail to get regular screenings because they think they’re not at risk. Without constant reminders, people get complacent, and the recent spate of conflicting recommendations about mammography isn’t helping. We women are often so busy looking after our children, spouses and parents that we don’t always look after ourselves. We have new data from a survey of 1.5 million women that shows that 50% of women over 40 – with coverage -- actually don’t get regular breast screenings. One of my dearest friends died of breast cancer three years ago at age 42 because she hadn’t bothered to go to the doctor in several years and wasn’t diagnosed until Stage 4. She was just too busy with her career and her family.

We know that our approach doesn’t suit everyone—some people think we should spend all our money on research, while others say we need to focus entirely on environmental factors. Other criticize our corporate relationships—never mind that they enable us to raise major research dollars and bring awareness messages to vast new audiences. We do listen to those with different views, but at the end of the day, there is no single right answer, no breast cancer silver bullet—the battle against this disease must be waged on multiple fronts. No woman has ever been cured of breast cancer because one group spent time and resources attacking another. There is room for many approaches.

Despite what you might hear, real progress has been made in terms of detection, treatment and survival. The five-year relative survival rate for early-stage breast cancer (cancer that hasn't left the breast) is now at 98%. In just the past 20 years, breast cancer mortality rates in the U.S. have dropped by 31%. It’s not at all unusual anymore to meet women who are living strong and productive lives long after their diagnosis.

Leslie Aun, Director of Marketing & Communications, Komen National

 


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Five Ways to Become Your Own Glue

Sunday, October 16, 2011

 

After church today some of my girlfriends and I stayed to commiserate about the collective, catastrophic changes all of us have encountered this year. Like Queen Elizabeth, who publicly referred to her “annus horribilis,” we all agreed that in many ways, we too, have had a horrible year. In reference to a year of stress, one of my friends matter-of-factly stated that she’d “lost her glue” to which I responded, “My glue died.” While our individual stories prompted serious thought, the real question for most of us is how do we change what we don’t like about our lives? How do we get our mojo back, and perhaps most importantly, how do we become our own glue?<PREVIEWEND>

The glue that keeps us on the right track, or binds us together as a family, is one of the most essential ingredients of life. For me that glue has been James and God, but when I step back and look at my life before I really knew either one, I realize I’ve always been my own glue. From the day I was born, six weeks premature and the first Rh-negative baby to survive a complete blood transfusion, I’ve been a survivor. My friends have always said I have guts. My glue, or what strengthens me, is a combination of the ying and yang of guts and fear, a sassy determination and a moral code. Together with James, whose glue was God, country, family and doing the right thing, we were an indestructible team. Now that he’s gone, I know I’m still the same gutsy, determined woman, I’m just having a hard time writing the script for the next chapter of my life.

Before any of us attempt to write a new script, perhaps we should step back and take inventory of what is and isn’t working in our lives. A severe headache that resulted in temporary blindness forced one of my girlfriends to assess her life. When her doctor asked about her stress levels, she listed a litany of things that had backed her into an unhappy corner, things she complained about, but until recently, did nothing to change. After her doctor prescribed a mild antidepressant, she took a good look at everything from family problems to rush hour traffic and a diet dominated by sugar, fats and fast foods. Who would have thought that leaving the house a little earlier would allow her to not only miss her tortuous freeway commute, but give her time to work out in her company’s gym, which then motivated her to change her diet and lose 11 pounds in the last few weeks? While none of these things have changed her stressful family problems, they have allowed her to view them with fresh eyes and a renewed spirit. Bravo girlfriend! You are inspiring!

Stress is a reality of life, and believe it or not, it’s not always a bad thing. Stress can push us to be the best we can be. It can motivate us and makes us stronger. It's a fly in the ointment, an unwanted ingredient in our glue. The challenge, however, comes in managing our stress whether it stems from illness, death or our own personal soap opera. Here are some things that might help us to strengthen our glue.

1. Be your own best friend. Most of us instinctually know when we’ve gone down the wrong path. Don’t wait for permission before you make changes to your life. Instead, give yourself permission to act in your own best interest.

2. Focus on the solution not the problem. Step back and look at the big picture. How did you get here and what’s the best way to get out or lessen the problem?

3. Know when it’s time to ask for help. While we may like to think we’re Wonder Woman or Superman, none of us always manage to find our way out of the maze. Find a counselor or a trusted friend who can help you think through your options.

4. Don’t move on without healing the problem. Just because you don't work through your grief and anger doesn't mean it's not there. Resolve problems before they stack up and become cumulative.

5. This too shall pass. Visualize the life you want. While it may not come to pass, it may motivate you to make the changes necessary to move through this time in your life.

My girlfriends at church are a wonderfully supportive group of women. Our love of God and one another makes for our own powerful, healing glue. Thank you, sweet friends, for leading the way. You always manage to lift me up.

 


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Estrogen and Breast Cancer Recurrence

Sunday, October 09, 2011

 

©Survivorship Media Network, LLC. All rights reserved.

 “Sugar and spice and everything nice, that’s what little girls are made of…” The writer of this popular children’s rhyme forgot a key ingredient, estrogen, the hormone that turns sugar and spice into curvy hips and breasts. Estrogen is great until it runs out, as in “I’m menopausal, out of estrogen, and I’ve got a gun,” or when it turns on us and is linked to some breast and ovarian cancers.

Many breast cancers are fed by estrogen, so if you’ve been diagnosed with estrogen-positive (ER+) breast cancer, you may want to block all forms of estrogen. It’s interesting to note that women who have a recurrence of ER+ breast cancer have higher levels of estrogen in their blood, even if they’ve taken estrogen-blocking drugs. If you’ve been treated for ER+ early-stage breast cancer, here are some dos and don’ts to reduce your risk of recurrence:<PREVIEWEND>

Because exercise lowers blood estrogen, be physically active every day. Try and walk 30 minutes, six days a week.

Even if you’re past menopause, excess weight around a woman’s waist often turns into excess circulating estrogen in the body. Therefore be as lean as you can, within normal body weight, but not skinny. Chemotherapy and radiation treatment for breast cancer can often make it difficult to keep weight on, but do not use this time as permission to diet. Your body needs lots of healthy, colorful low fat foods to fight your cancer.

• Research has shown 30-50% of cancers are nutrition-related. Reduce consumption of high-fat meats, cheese, whole milk, fried foods, processed foods and fast foods. Trim fat and skin from meats.

Limit red meat and processed meats as well as chicken, eggs and dairy that may contain added hormones. Look for products that say “Hormone Free.”

• Cancer is an “obligate glucose metabolizer” which means its preferred food source is glucose. Since sugar is 50% glucose, it seems logical to minimize refined sugar found in cookies, candy, soda and desserts. Limit refined white foods like bread, pasta and rice, which easily convert to sugar.

Look for the word “whole” on the label when purchasing cereal, pasta, crackers, bread, tortillas and rice. Use brown rice instead of white.

Eat a diet primarily of fruits and vegetables, including berries, nuts, seeds and “whole” grains, which provide powerful and important phytochemicals that protect cells and stimulate the immune system.

A big portion of your immune system is in your gut. Keep it regular and running smoothly by drinking a daily probiotic. Whole grain breads also bring added fiber to the diet.

• We’ve all heard soy is a breast cancer inhibitor, but once you’re diagnosed with ER+ breast cancer, soy is thought to produce phytoestrogen effects, or they act like the hormone estrogen. While this is controversial, many oncologists suggest women with ER+ breast cancer avoid all soy products, soy supplements and soy isoflavones.

• Limit alcohol consumption. Alcohol has been shown to increase estrogen metabolism and circulating estrogen levels in postmenopausal women. Because research on the amount of alcohol consumed per day is mixed, it is suggested alcohol should be limited to 3 to 4 drinks a week.

Avoid body and skin care products containing soy and all forms of parabens. Parabens are used as preservatives and produce possible estrogenic effects when absorbed by the blood stream. Unfortunately most of the shampoos, lotions, skin care creams and sexual lubricants on the market contain methyl, ethyl, propyl, butyl, isopropyl and isobutylparabens. You might consider shopping for all natural products at Whole Foods, or online at BreastCancerSisterhood’s Retail Therapy.

• This is probably obvious, but avoid all forms of estrogen creams, patches and yes, bioidentical hormones. As the Today Show’s Dr. Nancy Snyderman told me, “Hormones are hormones are hormones.”

And finally, don't become obsessed trying to follow, to the letter, all of these dos and don'ts. As with everything in life, do all things in moderation, including moderation.

 


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My Best Friend Has Breast Cancer

Sunday, October 02, 2011

This week one of my best friends was diagnosed with breast cancer, and I’m devastated for her. The news that she will be hurled into the same ugly fight I’ve endured has rocked me to my core. Naively, I hoped I’d taken the “hit” for all of the women I love, but cancer doesn’t work that way. Cancer is indiscriminate.<PREVIEWEND>

After two suspicious mammograms and an ultrasound, my friend had a needle biopsy. For the next three days we waited for the results. Thursday her doctor left a voicemail saying, “We need to chat. I’ll call you, again, tomorrow.” Tossed out like a line from a bad “B” movie, I wondered what kind of doctor leaves such a thoughtless message. Surely the doctor knew the implications of her words, that they would hang in the air like bold letters etched in stone. At that point it was hard for me to throw out positive lifelines, and even harder for my friend to catch, and so we steeled ourselves for the worst.

Since high school my two best friends have been Gayle and Lee. They are smart, funny women who’ve seen me through good times and bad. Today it’s my and Lee’s turn to be there for Gayle, because Gayle is the one who’s been diagnosed with estrogen positive breast cancer. To say we’re shocked is an understatement and to say we’re angry doesn’t begin to describe the anguish and devastation we feel.

At the same moment Gayle called me on my landline to tell me her biopsy results, Lee was calling my cell phone to see if I’d heard from her. In a weird kind of conference call, I put Gayle and Lee each on speakerphone, and held the two phones together, while Gayle told us the results. I think we were all prepared, but hearing it and having it confirmed was sobering. I stared at the phones, imagining each of my friends on the other end. I could see their faces, the same faces I’ve loved since we were 16. Our conversation was punctuated by silence, then tears, followed by laughter and more tears.

Yesterday when I told Gayle I might start writing blogs with information I wanted her to have, she suggested I go ahead and use her name. Perhaps by personalizing her breast cancer journey, it might help someone else in ways we have yet to imagine.

Next week Gayle is having a lumpectomy. This will tell us a lot about her cancer and the kind of treatment she’ll need. At this point, we believe her cancer was caught early; Stage 1, and she may need radiation but no chemo. I can’t help but think of when Gayle and Lee and I went to an outdoor Sting concert, in 100 degree plus Texas heat, eight days after my first mastectomy. I wore white linen and my turkey basters, as Lee called them, the temporary drains attached to where my breast had been. Our seats were in the last row and Carrot Top could have been lip-syncing Sting songs for all we knew, but I didn’t care. I was there. I was alive, with my two best friends, singing and clapping like my world hadn’t been condensed onto a glass slide two inches long and three-quarters of an inch wide.

As I looked at the thousands of women in the audience, I thought of the one in eight women who will be diagnosed with breast cancer. I looked from woman to woman thinking, “She’s had it, or she has it and doesn’t know it.” If each of these women had known about my bandages and my turkey basters, where the week before my breast had been, many wouldn’t have agreed with me that life doesn’t get any better than this. I wanted to hug each one of them and tell them to keep singing, keep laughing. Pull from each moment the things you want to remember. Savor them. Laugh at them. Live your life with joy.

So now I’m telling these things to you, Gayle. I love you, sister girl. This won’t be easy--I know--but you will get through this and emerge on the other side stronger than ever. You will be all right. Of that, I am certain.

And to Gayle’s breast cancer, “You’ve raised your ugly malignant neoplasm in the wrong breast, and we’re fixing to kick your ass to the curb!”




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