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Day 3, Celebrating the Ordinary

Tuesday, August 28, 2012

©Brenda Coffee. All rights reserved.

Can you see that? It's rain, rolling in rivulets off my roof! Ordinary and yet, sometimes rare, rain! Granted, it didn't last more than five minutes, but I hurriedly removed the cushions from the chairs and then stood in the doorway and smiled. Rain! Our cracked dry earth is drinking it in like the life-giving elixir it is. 

What is it about the smell of fresh rain? Do you suppose that loamy, earthy smell is universal, or does Marie's rain in Ireland have a different smell than Philippa’s rain in Myanmar or mine in South Texas?

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Day 2, Celebrating the Ordinary

Tuesday, August 28, 2012

©Brenda Coffee. All rights reserved.

As a part of continuing my friend, Marie’s, challenge to photograph and write about the “ordinary,” let me say I’m not sure anything about yesterday was ordinary. The day began in the limestone courthouse of my little town. After several hours of listening to testimony in a case James had been an integral part of, and that affects me and my neighbors and our right to enforce our deed restrictions, I had to leave to check on Goldie. My girl is on pain meds and is restricted to the smallest room of my Little House, the bathroom. For now, all I can say is there’s a real possibility I may have to send my best girl to live with God, and I’m not ready, yet, to think about losing another family member.<PREVIEWEND>

After checking on Goldie, I headed into San Antonio for an appointment with the dermatologist. Because I carry the BRCA2+ breast cancer gene, which means I’m predisposed to melanoma, once a year “Dr. Humorless,” cryogenic bottle in one hand, and a magnifying glass dropped down over his glasses, checks every inch of me. I think he enjoys it, but I’m not sure whether “it” is my naked body or the process of freezing off suspicious moles. If I had to guess, I’d say the freezing part gets Dr. Humorless’s juices flowing, if you know what I mean. It’s just the way his one, magnified Mr. Magoo eye looks up at me, as if to say, “Heh, heh, heh, little girl.” Reminiscent of Hannibal Lector, he makes me wonder if my moles would go well with “some fava beans and a nice chianti.”

My next stop was a television studio to shoot a spot for Cure Fur Cancer, an upcoming fur fashion show and cancer fundraiser. You would have thought I would be a pro at this, but I was terrible! When I started talking about cancer and the devastating affect it has on families, I was emotional toast! No matter how hard I tried, I couldn’t get the lump out of my throat. It wasn’t just that I was talking about how families are pulled apart by cancer. My emotions about James, and the case he worked so hard on and the prospect of losing Goldie, were all jumbled up together with cancer families. Carol Glaze, owner of Morris Kaye & Sons Furs, was so gracious about my on camera ineptness. Thank you, Carol. Each year Carol does an amazing job of rounding up ever more awesome auction items and then making it easy for people to bid lots of money for them. If you’re in the San Antonio area and would like to join us, September 15th, or donate money to Cure Fur Cancer, come on down!

By the end of the day, I’d put 150 miles on my car, but not before I stopped at a favorite place for a quick bite to eat. What could be more ordinary and basic than a simple meal of water, that when really cold, has the texture of velvet; goat cheese and basil pesto; fruit and crackers and prosciutto and fontina paninis? Considering my long, disjointed day, it was exactly what I needed. The Fonze would have said it was “Perfectamundo.”

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Sunday: Celebrating the Ordinary

Sunday, August 26, 2012

©Brenda Coffee. All rights reserved.

For most of my life my camera has been an appendage I’ve rarely been without, but since James died, it has languished, unused, in the bottom of my purse. The fact that my camera’s been relegated to a purse is extraordinary in and of itself, especially considering that until a few years ago, I rarely owned or carried a purse... only camera cases.<PREVIEWEND>

Recently, however, when friends came to visit, I pulled my neglected camera out of my bag. It felt good to have a camera in my hands, again. It was particularly timely because my friend, Marie, has challenged her fellow breast cancer bloggers to capture, in photographs, the ordinary things around them and post them to their blog each day for a week. While I may not post everyday, I’ve accepted Marie’s challenge. So, dear readers, this means you’ll be hearing from me a lot this week.

One of the places I took my friends, and my camera, was to Mission San Jose, an historic compound many of us locals take for granted. While it may have become commonplace for many, it is anything but ordinary. Mission San Jose was a walled community built in 1720, on the banks of the San Antonio River. To see it now, lovingly restored, it’s easy to imagine it as a bustling outpost on the Spanish frontier. Inside high stone walls, Franciscan missionaries worked to convert 350 indigenous Indians to Christianity, while outside the walls, residents built an aqueduct, tended crops, worked in the granary, raised livestock and defended themselves against marauding Apaches and Comanches.

Even though the Mission was at the very core of their ability to survive, I can’t help but wonder if the residents got so they took their Mission for granted? How quickly did they forget the hardships of living in thatch and mud structures, trying to survive on their own? After a while, it’s easy to take even the most splendid of surroundings for granted. They become commonplace and ordinary, making it easier for us to focus on their flaws and shortcomings.

This week, my camera will no longer be the thing that makes my purse heavy. Instead, it will go back to being a creative part of my heart and soul; the way I celebrate and separate the ordinary from the extraordinary.

Is there something, or someone, you’ve taken for granted? Perhaps it’s time to celebrate what’s become ordinary in your life, especially if it’s life itself.

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Breast Cancer Clinical Trials

Monday, August 20, 2012

Last week, Elly Cohen, Ph.D. gave me an online tour of As Program Director for the site, as well as Asst Professor at the University of California San Francisco, Department of Surgery (UCSF), Elly and her team have worked hard to develop a resource for those seeking further Stage IV breast cancer treatment.<PREVIEWEND> was originally based on a patient idea: Since many physicians don’t discuss clinical trials with their patients, the study wanted to know whether women could self-report their breast cancer history online (age, type of cancer, pre or post menopausal, bio marker status, mets/no mets and treatment to date), and match their history with an accurate clinical trial that suited their needs?

In 2008, the nationwide personalized matching service was launched as a collaborative research project between the National Cancer Institute and UCSF in hopes of reaching women who didn’t know about clinical trials. Since then, the system has been tested, retested and refined, then tested again, and site organizers continue to respond to user suggestions. While I haven’t personally gone on this site in search of a trial, the online tour Dr. Cohen gave me seems intuitive and easy to navigate.

Because not everyone wants to do the personalized matching service, the site offers an alternative that allows you to "See All Trials" and organize research studies by zip code. Patients can see trials nearest them and read what they’re about. It also gives trial location, a map and the trial coordinator along with their email and phone number. Users can also see all newly opened trials, even if they’re far from home. Another feature allows patients to enter their type and place of metastasis, filter out all trials that don’t pertain to them, then save them to the secure site and/or email them to their oncologist. The latest version of the site was launched in March 2012 and allows users to select a “QuickView” to browse by tumor type, including Triple Negative and Inflammatory Breast Cancer and trial type.

One of the hottest trials is the “Vaccine Therapy,” designed to harness the body’s immune system. Researchers hope vaccines will be good for those whose body’s are failing to respond to other treatment. Complementary and Alternative Medicine trials are also available. While clinical trial providers are careful not to recommend any of the trials listed as the way to go, since patients can email their doctors the studies they’ve found, providers hope this will begin a much needed dialog between patient and doctor about further treatment options.

When most of us hear the term “clinical trials,” we think about treatment trials for those who have no other treatment options, however, numerous trials are also looking at quality of life issues. One of these is “cold caps,” a refrigerated unit worn on the head that constricts the flow of chemo to the scalp in hopes of lessening hair loss. Other quality of life trials involve adding treatment agents to alleviate symptoms of neuropathy, and 30-minutes of radiation during surgery to remove the cancerous tumor, as opposed to up to six weeks of daily radiation after surgery. Still other trials are psychosocial studies about the side effects of treatment on the brain. will also email you if a new trial comes online that’s a fit for you. They also have a quarterly newsletter and new weekly articles posted on their Facebook page, so you might want to “Like” their FB page.

Since many of you are looking into further treatment for Stage IV breast cancer, I hope this site will be a valuable resource for you. Please let me know what you think of the site and if you join any of their clinical trials. Wishing you all God’s blessings.

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Will Komen Really Have New Leadership?

Sunday, August 12, 2012

©The New York Times

Who would have thought The New York Times would print one of my Twitter posts? I'm not an Ashton Kutcher or a Lady Gaga, whose every Twitter and Facebook message is monitored and scrutinized by the press. However, The New York Times and USAToday did see and respond to my Tweet about the controversial Nancy Brinker, soon to be ex-CEO of the organization she founded in name of her sister, Susan G. Komen. As my Tweet suggests, unlike Elvis, Ms. Brinker has not left the building. It seems as though she may just be playing musical chairs.<PREVIEWEND>

In what may be a delayed and long over due attempt to appease Komen’s critics, Ms. Brinker will be moving from CEO to a supposedly "lesser role" that focuses on strategy, global growth and fund-raising. Hasn’t she been doing that all along? It also seems as though she will be the decision maker on who becomes the new CEO. Hmm... In addition, Komen’s president, Liz Thompson, and two Komen board members announced they were leaving Komen, all moves that for many are too little, too late.

Nancy Brinker and her Komen organization have long been heated targets of breast cancer advocates worldwide, not to mention anti-abortion activists and supporters of Planned Parenthood. For anyone who doesn’t read the “pink stories,” Brinker and her organization’s decision to cut funding for breast cancer screening grants to Planned Parenthood caused many potential donors to put their checkbooks back in their wallets. Even before the Planned Parenthood debacle, Komen’s serial failure to make good decisions (unhealthy choices of funding partners like Kentucky Fried Chicken and Mike’s Hard Lemonade, not to mention the dismal amount of money that actually goes toward finding “the cure”) have caused Komen to repeatedly find itself teetering on the edge of it’s own pink ribbon.

In February I wrote a blog called, “Should Komen’s Nancy Brinker Step Down?” That was the first time I took off my journalist’s hat when writing about Komen. Prior to February, I reported the facts, with no editorializing, and gave them the benefit of the doubt until: Komen decided to address the breast cancer community via my blog and then didn’t engage, as promised, in a dialog with readers. Once again, Komen has handled yet another incident poorly, or perhaps we should say, “What incident has Komen handled well?”

While many think the recent position changes are a PR move, it seems like once again, Brinker’s lofty goal of finding a cure for breast cancer has turned into a three-ringed circus with what may be ego in the center ring. In February, I suggested:
“ order to rebuild their image, it’s crucial for Komen to have the support of breast cancer advocacy organizations and top breast cancer social media mavens. ...they must gather breast cancer bloggers into their fold, listen to our concerns and once again, gain our trust.”
If anyone doubts the power of Social Media, the millions of us out here in digital land have left organizations like Komen with no place to hide. Thank you Jennifer Preston at The New York Times and the always incredible Liz Szabo of USAToday for asking for my thoughts on the matter and for sharing them with the world.

The real story in the Komen soap opera shouldn’t be about poor choices, skepticism or ego. The real story is about the millions of breast cancer families who are devastated and shattered by this terrible disease. The ultimate story will be about the heroes who find a cure for this insidious destroyer of life and love.

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