Wednesday, March 31, 2010

Fox News reporter talks about her treatment for triple negative breast cancer

This video "package" is pretty compelling.  Jennifer Griffin shares her experience with the camera (often operated by her 7 year old daughter.) She also has some advice for women in the same situation.

Survivor support offered by teleconference

I am always looking to share with our readers new ways to improve our quality of life after treatment. To be honest,  I don't know much about this organization, but it appears to be organizing something unique.

Rochelle Togo-Figa is organizing a series of telephone sessions from April 19-23, with the goal of offering women inspiration. According to her website, which appears to be fairly new, she is also writing a book.

Here is a link to the announcement.


Worth a read! Survivor reflects on mammogram controversy

I could easily fill Loop with nothing but news of the mammogram controversy. I actually try to be quite picky about the articles though, because since most of us already have cancer, the debate can be exhausting and frustrating.
But I do suggest reading this next article by Sarah Crompton.

   At first it just seemed to be a simple piece of good news: a new report "proves" that Britain's breast cancer screening is effective at saving lives. "Hurrah!" you thought. "One less thing to worry about." But then, euphoria was replaced with confusion as scientists bandied around statistics that back entirely contrary positions.
   Eighteen months ago, my eyes would have glazed over. Like most women, I would have shoved the entire thing to the back of my mind, as unlikely to be relevant to me. But now I shout at the radio with the assurance of an expert. Because 18 months ago I had invasive breast cancer diagnosed, and in the course of my treatment I discovered just how slippery and difficult those statistics can be – yet what a huge amount of difference they make to women's lives.
(read more from the Telegraph)

Score one for the mammograms

After last weeks studies from Europe, it looked like mammograms were falling out of favor for women under 50. This new report from the U.K. focuses on the lives screening saves.

Tuesday, March 30, 2010

Maryland woman fund-raising superstar

Woman raises $49,000 for breast cancer research, supportWow.... it's hard to ask people for money, even when it's for a life-saving cause.
So cheers to you Deb Willis.
Urbana -- As a top fundraiser for the 2009 Avon Walk Washington, Urbana resident Deb Wills was recognized at the 2010 Grand-Am Rolex 24 in Daytona, Fla., in February.
(Read more from the Fredrick News Post)

No meat, No heat : Light lunch for warm days

Secrets of a Skinny Chef: 100 Decadent, Guilt-Free RecipesThe debate continues over which foods are best for breast cancer women, but last week's reports from Barcelona seem to suggest that a healthy diet is more important than ever. Plus I personally feel more energetic when I eat better food. "Skinny Chef" Jennifer Iserloh suggested some tips and a very unique recipe for a summer soup. Suz

It’s a drizzly day here in Hoboken, New Jersey but I’m not letting it get me down! Over the weekend I made a light lunch I want to share with you, that some of my friends nicknamed “guacamole” soup.  I love this simple blender soup because it’s creamy and satisfying, but at 137 calories per cup, I feel good instead of guilty sipping it as I pull my bikini out of storage in anticipation of my trip to Mexico.  Besides being calorie friendly, here are some other ways it will help you to stay cool and healthy this spring and summer.

Surefire Ways to Stay Hydrated
Avocado happens to be rich in potassium, one of the minerals that’s essential for balanced water levels in the body.  When it’s time to play in the sun, stay hydrated two ways with an iced drink and sumptuous blended soup that can be made in minutes.

Protect Inside and Out to Reduce Wrinkles
Add sweetness to summer dishes with juicy fruits such as kiwi, that are bursting vitamin C.  Along with a good coat of sun screen, this powerful antioxidant can help your skin repair itself after a day in the sun. And best of all: this beach bag friendly lunch will keep up to 8 hours in a thermos.

Yummy Tummy
Soup can satisfy and be nicely filling when made with ground nuts.  Almonds add plenty of texture and the right kinds of fat to this low calorie meal. Studies show that eating monounsaturated fats in place of saturated ones can reduce cortisol levels – important as cortisol is a prime driver of belly-fat build up.

Poolside Soup

Serves 8

I named this Poolside Soup because it’s light and packed with velvety, cool flavors that can refresh you on a hot day. It’s the perfect fast lunch, one that I can make even while chatting with my girlfriends.  It’s low in sodium, and won’t give you the belly bulge we all want to avoid during swimsuit season.

4 cups green grapes
2 ripe Hass avocados, peeled
2 kiwifruits, peeled and quartered
2 medium shallots or 1/2 medium red onion, quartered
1/4 cup red wine vinegar
1 cup fresh mint leaves
1/2 cup slivered almonds
1 teaspoon salt
1/4 cup cold water

Place the grapes, avocados, kiwis, shallots or red onions, vinegar, mint, almonds, and salt in a food processor. Add the water and pulse the mixture until smooth. Serve at room temperature or chill covered in an airtight container for at least 1 hour or up to 2 days.

Per serving (1 cup): 137 calories, 3 g protein, 15 g carbohydrates, 9 g fat (1 g saturated), 0 mg cholesterol, 4 g fiber, 296 mg sodium

Jennifer Iserloh, the Skinny Chef, believes that the essence of good health springs from your own kitchen.  You can eat the foods you love by cooking them the healthy way to satisfy both body and soul! She celebrates delicious, easy to prepare dishes that can be enjoyed for a lifetime, reinventing meals that grandma would be proud to serve.

As a trained chef, Jennifer has shared her recipes and healthy living tips both in print publications such a SELF magazine, Prevention, and First for Women, as well as on the Today Show, CBS, NBC and other TV and radio programs. A certified yoga teacher and former private chef for internationally known celebrities, she continues to teach the secrets to comforting meals made healthier and healthy fare made tastier.

Monday, March 29, 2010

Stumbling In

Wow, at long last we have been starting to get some web traffic from Stumbleupon! So if you are a stumbler, please use the widget to give us the thumbs up! I am curious to see if this helps us find a wider audience.

Study raises questions about multivitamins and breast cancer

Yet another topic to bring up with your doctor. Hard to know how to interpret this without more study.

NEW YORK (Reuters Health) - Many people take multivitamins in the hopes of thwarting disease, but a new study finds that older women who use multivitamins may be more likely than non-users to develop breast cancer.

(read more from Reuters)
photo from

Sunday, March 28, 2010

Feeling sexy after mastectomy: One lingerie lover's mission

Editor's Note: One of our goals for Loop has been to cover fashion in a way that is relevant to breast cancer women. Amy Bath decided she would not let cancer steal her love of sexy lingerie, so she started her own business, "About the girl."  As she writes, it's not easy opening shop in this economy, but she is determined to succeed.

In September 2007, I awoke from a dream about breast cancer. It seemed so real, that I felt my breasts to check. And, I thought I felt a lump. I went to my doctor and a month later I was lying in a hospital bed after a lumpectomy. That didn’t do the trick, so I had a mastectomy, chemo and radiotherapy.

Before all of this and like so many women, I had a love of beautiful lingerie. Wearing gorgeous underwear made me feel more confident about myself. I’m not a very socially confident person, so every little bit helps, to pinch a well-known slogan.

What a shock I got after surgery. I had to throw away all my beautiful bras, which did nothing for my morale and I have to admit that I shed some tears. Facing the fact that I just had no use for them really hurt. But when I started shopping for mastectomy bras, I was completely dismayed.

It seemed that I was in a time warp lasting an entire generation!  Everything I found seemed to be the sort of thing my grandmother would wear.  I was reminded of the old adage about Ford cars. Any colour you like as long as it’s black. Or white, or beige in the case of mastectomy bras! At the very time I needed to restore some degree of confidence in my appearance, I had nothing, but a disfigured reflection in the mirror and the charity I worked for had just made me redundant! Talk about being kicked when you are down.

My partner, one of the few men I’ve met who isn’t embarrassed to buy nice underwear for me, asked “why don’t you do something about it?” I dismissed it out of hand of course, but the thought kept coming back to me. Why not?

I scoured the world-wide web, in it’s literal sense and eventually found some beautiful French lingerie.  Where else? I also found some maternity lingerie, which could be adapted for mastectomy wear. I didn’t think anyone would be interested in doing business with me and my little plan. However, I guess in a recession, any opportunity gets a fair chance, because before I knew it I had negotiated three deals.

Setting up the company was easy, but after 4 months we had to start over again with the website development. Technology; great when it works!  Which it now does, I’m pleased to say.  I have just added the swimwear range.  Bikinis for breast surgery patients. Imagine, no more boring swimsuits! I’m having a great time. I’m not making any money because I designed the website to look good and Google’s spiders or whatever they’re called don’t seem to think that About the Girl is a worthy cause. But hey, without technology we couldn’t Twitter, so it’s not all bad.

My passion, is to make my own mastectomy lingerie here in the UK.  The quality of products made in China, in my view, just isn’t good enough.  Very soon, I will be designing a new range.  So please, anyone reading this, look at the website and let me know what you would like.  I am only one person.  What I need is lots of feedback from mastectomy patients.  I would love the design of About the Girl products to be driven by the people who are going to wear them.. There is a section called Girl Talk where you can make comments and suggestions and a blog too. I can’t do it without you.

When I was asked to write this blog, I think the angle was that my story might be ‘inspirational.’ I don’t know about that.  But what I do know is that every person I have met who has gone through breast cancer is a hero in my book.  Your courage and determination to beat this dreadful disease is something that continues to inspire me.

If you’re comfortable with who you are, you certainly have my admiration and love.  If you feel restless and feel a need to do something, then perhaps my story can be an inspiration.  After all, if through plain doggedness and determination, I can build a mastectomy lingerie business, just imagine what YOU could do. 

Amy Bath is 43, has two teenage children and lives in a rural area of East Sussex, England. She studied textiles and bra making at De Montfort University and set up aboutthegirl in 2009 after finishing her treatment for breast cancer.
Her web site is .

Saturday, March 27, 2010

Scientists investigate new breast cancer screening technique

What an interesting article out of Canada. While the mammogram controversy continues, I really hope that someday soon there will be new, more accurate tests, especially for younger women. Perhaps this research will make that a reality someday.
  A team of Toronto-based scientists is hoping to revolutionize how quickly breast cancer is diagnosed and treated using a technique that evaluates teeny-tiny fluid samples, thereby significantly reducing the invasiveness of conventional methods.
(read more from the Edmonton Journal)

Friday, March 26, 2010

Broccoli and Belief

It's been interesting reading the headlines on breast cancer coming out of Barcelona all week. The suggestion that diet and exercise may have an impact on breast cancer are nothing new, but this set of reports seems especially blunt.

Some researchers believe that up to a third of breast cancer could be prevented by lifestyle changes. While as a journalist I can't argue with what is being reported, as a survivor it's another story. It is very easy to blame ourselves for getting cancer, and in fact doing so can give us an illusion of control. Was it that half gallon of ice cream I ate in 2005? The fried cheese in 2008?

Reality is a lot more complicated. I have personally been on a slow path to eating more vegetables and less meat. A slow path. Fortunately I have always liked to exercise, though I have struggled with my weight. Now that I think about it, today all my meals have been meat-free. I have embraced spinach, a vegetable I used to avoid, and seek broccoli like it's the holy grail.

Of course I have no way to know if all this will make a difference, when it comes to cancer. Are my adjustments enough? My husband and I have been apartment hunting, and one place was located near a funky little juice bar that promised "healing concoctions." A little part of me hoped that they somehow would have the magic drink that will keep me safe.

The other night during the health care debate a pundit on cable news claimed that "since he takes care of himself he won't be a strain on the health care system." I got pretty furious. While some of us survivors are cookie addicts, there are plenty of slender, fit, healthy women who ended up in this cancer boat.

One thing I try to keep in mind is that improving my diet is not just about fighting cancer. While that cauliflower curry soup I had for lunch yesterday may be no magic ticket to a tumor-free future, eating well and feeling better are rewarding in other ways.

Image from

Wow! Amazing resource for breast cancer survivors in the U.K.

This sounds like a fantastic resource for women who are post-treatment. I would love to visit someday. It is called the Breast Cancer Haven. Here is an excerpt from a recent article in the Telegraph. Who knows, maybe we could start one here in NYC?

   Here I found the perfect marriage between conventional and complementary therapies – everything from counselling, craniosacral therapy (gentle touch eases the restriction of nerve passages, easing stress and pain), and kinesiology (rebalances the body's energy system and boosts the immune system using a combination of magnets, acupressure and homeopathy) to nutrition advice, reiki (hands-on healing) and shiatsu (Japanese healing using finger pressure).
(Read more from the Telegraph)

Busy in Barcelona: Sorting out the headlines

A huge number of research studies coming out this week from the Barcelona breast cancer conference.
Some of it makes me excited and inspired, and I will admit some makes me confused and concerned.

This item on beta blockers lowering the rate of metastasis really was interesting. 

I think this next item could be a bit controversial, especially in the U.S., looking at the survival rates and the role of mastectomies for women with BRCA genes.

And of course...the mammogram controversy continues.

If nothing else, you now have something to chat about with your doctor at your next visit!

photo from

Thursday, March 25, 2010

European study supports pregnancy after breast cancer

Lots of science news this week, with a major conference going on in Barcelona. Unfortunately the mammogram controversy isn't going anywhere, but this item about pregnancy after breast cancer caught my eye.

As always, everyone's situation is unique, and speak with your own M.D.

Lots of other headlines coming out of the conference, I will work on a round up for tomorrow.

Young Canadian Breast Cancer Survivor Speaks Out

Editor's note:Those of us in our 30's and 40's feel like young survivors, but I was moved by the first person account of Kimberly Reid who was diagnosed at 24.

I was only 24 when I learned I had Stage II breast cancer. Five years later, I’ve discovered what really matters.
(Read more from the Globe and Mail)

"What Not to Wear" features Breast Cancer Survivor Sara Jordan: Updated

You don't see too many features in fashion magazines about adjusting to life after breast cancer surgery, but a March episode of "What Not to Wear" featured Sara Jordan, a breast cancer survivor and American Cancer Society volunteer. The Pennsylvania mom chose to have a double mastectomy with no reconstruction and on the show wore no prosthesis. Another challenge, after treatment she lost 91 pounds.

I will say they did a really good job of finding clothes that make her look curvy, especially the print blouses. They also took a big risk giving her a short red pixie cut, but I thought it looked nice, especially after she put on her new makeup and outfits. (I used to have short red hair so I am partial!)

The show also featured quite a few ads for ACS, and it appears the hosts are also involved in the organization. All in all it was a good show, and will probably be quite an inspiration for other new survivors who feel like it's time for a new look.

I decided to write a new post on this because we now have a link to Discovery's blog which features her shopping lists.

In addition there is a q&a with host Stacy London about making the episode.

photo from discovery

Breast cancer survivor receives a dream from a genie

Reading this story is a great way to start the Maryland a breast cancer survivor has a dream day complete with dolphins, a massage, and a genie!,0,6868901.story

Wednesday, March 24, 2010

Safety lox

Sometimes it is the minor changes breast cancer brings about that are the hardest to accept. I was pretty shaken up when a nurse in the hospital told me it would no longer be safe to go in a hot tub due to the risk of lymphedema. However, the biggest shock came when my cancer center's nutritionist said I would have to give up lox.

Now if you are reading this in Nebraska or Mexico or France, you perhaps are saying,"What on earth is she talking about?"
Lox, a/k/a Nova is smoked salmon, and if you are Jewish or a New Yorker it's a quintessential taste. I like matzoh brie and kasha, but lox may be the single most iconic food for American Jews of Eastern European decent. When the nutritionist told me to limit my consumption of it to 4 times a year I was incredulous. Apparently the problem is the smoking, and while I understood that flame grilled beef could be carcinogenic, I never imagined lox could be risky. It was fish, right?

The nutritionist did mention that if I could find lox that was cured in brine, but not smoked, it would be safer. So today I found myself on the Lower East Side and headed over to Russ and Daughters, one of NYC's oldest and best known appetizing stores.

I was relieved to find out behind the counter they do have two smoke free options. Belly lox which is VERY salty, and gravelox, which is obviously a relative of gravlax. I ordered the latter on a pumpernickel bagel with a little bit of cream cheese and tomato, which turned out to be a very satisfying sandwich.

I realize limiting lox is far from the biggest issue facing women with cancer, but still I am a bit proud of myself today. For at least one meal I found a way to maintain a cancer-fighting diet, without giving up a taste that is a cultural touchstone.


What's your story?

Here on Loop many of our most popular stories are written by women who are not professional journalists.

Most have personally experienced breast cancer. Some like Neile Jones or Caitlin Thayer have other connections to the causes. There are also experts like Doc Gurley, Skinny Chef Jennifer Iserloh, and Tara Rodden Robinson the productivity maven who graciously donate their expertise.

If you are involved in a breast cancer charity, we would love to keep in touch and know what you are up to.

So what's your story? Do you know of a really unique project, or a remarkable woman with breast cancer?

If you are an established blogger, posting a guest blog here can help connect you with a great community of writers and expand your audience.

Drop us a line

image from

Tuesday, March 23, 2010

Pro golfer takes a swing at breast cancer by raffling Master's badges

Pro Golfer Cristie Kerr calls herself a "breast cancer activist" and has established a charity called "Birdies for Breast Cancer."Now she is taking her efforts one step further, raffling off two badges that will allow the winner and a guest to see the final weekend of the Master's where Tiger Woods is expected to make his return.
The prize package is pretty generous, including first class airfare, accommodations, and even money to pay the taxes on the winnings.

For more information:

Photo from

Pain killers and breast cancer, intriguing evidence

Possibly the biggest headline of the year in breast cancer research was the study showing that aspirin might be a an effective treatment. A study indicated that regular use of aspirin could possibly prevent or slowing down metastasis.

Still some doctors were skeptical.  Now new information may explain why aspirin and other pain killers could have a benefit for women with breast cancer.

TUESDAY, March 23 (HealthDay News) -- Postmenopausal women who regularly take aspirin or other painkillers have lower estrogen levels than nonusers, a new study shows, which might explain a decreased risk of breast or ovarian cancer among these women.
(read more)

Here is your smile for the day

This fund raiser gets bonus points for creativity! I met 2nd baseman at YSC and I give him a lot of credit for all the energy he puts into the cause.

Study says: Massage benefits breast cancer patients

There are quite a few programs offering free yoga to breast cancer patients, I have not found any for massage. Perhaps this study will help get the ball rolling. The authors say massage lowers stress levels in breast cancer patients, meaning less anger, anxiety, depression, and fatigue.
I will mention some physical therapy practices can be an excellent and affordable alternative to a spa or salon. 
Massage schools are another option. Here is the article from
(One of the fun parts of blogging is just discovering these sources are out there.)

Doing a little more research on the subject I found one link on, about essential oils and cancer. I don't know how strong the science is to back it up, but it may be something worth investigating.

photo from

Monday, March 22, 2010

More news on I-SPY 2

Scientists hope the I-SPY 2 trial will prove a shortcut for new breast cancer drugs. Some experts estimate the project's structure could mean therapies get to market up to a decade sooner.
Here is a link to the study's website, there are a number of locations where patients can participate around the country.

Showing the scars

Very unique and nuanced article about a woman who decided to bare her scars for the camera following her breast surgery.

The Health Care Post

I thought long and hard about how or what to write about the health care debate, and the legislation that was voted on in the United States House of Representatives last night.

First, as a professional journalist,  I have to be very careful about editorializing on political issues. (This is just Suzanne talking by the way, Deb can write what ever she likes.)

Second I try to be conscious of the fact that breast cancer, is not a Democratic, Republican, or Libertarian disease. It's an equal opportunity disaster.

Still, I am hopeful today. Dealing with any cancer is a nightmare. If you are uninsured it's even worse. When I read the stories of what women in that situation have to deal with, on top of enduring treatment, it breaks my heart.

One example, this article by Herald News reporter Deborah Allard.

It follows the story of Jennifer Martin, a Young Survival Coalition member with stage 4 cancer.

Every single day I give thanks for my insurance. My husband gets a big kiss every night. But we still wonder what if? What happens if we run out of jobs with insurance and COBRA coverage?

I hope that what ever our elected officials deliver makes life for all cancer patients a little less scary.


Feel free to use the comments section
Photo from southern

Sunday, March 21, 2010

Caitlin's Story

Editor's note: I'm not proud to admit before I had breast cancer, it was not really on my radar. I may have attended a charity event, or participated in a public service campaign at my TV station, but mostly I tried to avoid thinking about it. 
Now as a survivor, I am so glad more people are not like I was. I am truly thankful for women like Caitlin Thayer who give their time, energy, and talent to help fight this disease. In this essay she tells us why.

Often when I walk into the Komen Connecticut office I think that if I had the privilege to work here that I would wake up every day excited, knowing that I work for one of the greatest organizations in the country. I look at the very dedicated staff of three (yes, three) that serve the entire state of Connecticut and shake my head at the amazing job they do. I’m happy to be joining them as a volunteer for the 2010 Race for the Cure in Hartford. Last year I volunteered on the day of the event and had such an amazing time and immediately said that I wanted to be more involved. So here I am, on the Marketing Committee and named the Social Media Chair.

Everyone also asks me why I’m so involved with Komen and breast cancer awareness. That was a popular question when I was walking the 3-day last year: “So you’re a survivor?” No… “Did your mom or grandma have breast cancer?” Well, no… “Then how come you’re so involved?” It’s not a rude question, just a curious one. I understand that people tend to gravitate towards charitable causes that they have a deeply personal and intimate connection to. Once a family member, friend or they personally are afflicted with a disease or disorder, THEN they get involved. Well, I get involved now so that I hopefully won’t have to worry about my family, friends or myself down the road. And I happen to have a deeply personal and intimate connection with my boobs; they are a part of my being and I would really like them to stay that way. I think that’s reason enough!

So I give in any way I can! I happen to be a social media fanatic so this year social media will be my contribution to the Race for the Cure 2010. But I’m also a Team Captain and a Town Captain for Race for the Cure and a Boston 3-day walker! Komen is an organization that as an individual I really feel like I’m making a contribution and a difference. As an organization that was started by one woman, it makes you feel like you can do anything! And my anything is helping find a cure for breast cancer!

Follow my blog for updates on Connecticut’s Race for the Cure, Komen CT and my 3-day training and fundraising! You can also follow along with what Komen Connecticut is up to on their Facebook page; or on Twitter;

Caitlin Thayer is the owner of Thayer Consulting, a group specializing in non-profit and small business social media marketing. She is a graduate of Clark University in Worcester, MA with a degree in History. When she's not in the Komen office she's usually reading a book, running or walking (training for the 3-day!), playing softball or sitting behind her computer on Facebook.

Saturday, March 20, 2010

Spring Forward!!

Spring Forward
Suzanne Harp

The instruction is a handy way to remember what to do with your clock at 2 AM on March 14. But having recently completed breast cancer treatment, this year the words took on new meaning for me.

"Spring forward" is my mantra of the moment. It's reminds me of the changes I need and want to make. Of the fact that things will get better. Here in New York, the landscape is still pretty brown, but you can see the first sprouts of green and the buds on the trees. The timing is perfect.  I asked all of our Loop writers what the season means to them.


My chemo will be finished March 31st, so spring is important to me this year.  Not only is spring an affirmation of life, one we cancer patients have needed during the long, dark winter of treatments - it also means simple things, like the regrowth of hair and the ability to eat fresh fruits and vegetable.  Because my white blood counts were very low all through treatment, fresh fruit as been forbidden.  Soon cherries will be in the markets; I'll have the energy to go, and I plan to sport my sassy manhair throughout the market, with cherry juice dripping down my chin! 
Ann Silberman.

In 1994, the first spring after my first breast cancer, a friend, who had also had breast cancer, left a large bouquet of sunflowers at my doorstep. The card said: "Because it is spring and because we are here."
Every April, I think of her and buy sunflowers.
Hester Hill Schnipper, LICSW
Chief, Oncology Social Work
Beth Israel Deaconess Medical Center, Boston
survivor of two breast cancers

I started chemo two Marches ago, at the beginning of a season that's normally so upbeat. But every spring hereafter, for the rest of my life, in which I am *not* facing chemo will feel all the sweeter. I'm looking forward this season to walks in the botanical gardens, resuming outdoor yoga class, and posing topless outside (yup, you read it right) as part of a photo project a friend and I are working on.  Pamela Beth Grossman, writer

Springs store energy. When compressed, the energy that went into mashing the spring down remains there, waiting to be released. That's what spring, as a season, is like. All the energy that went to sleep in the fall is loosed again, bursting out all over: into blooms and bumblebees and bird songs. And as the days lengthen, the sun awakens our spirits, too, and reminds us that we can stretch ourselves out, like cats, and rest in the warmth, soaking up the energy and renewing our souls.
Tara Rodden Robinson
The Productivity Maven

During the period of surgeries and chemo that started in June, 2008, gardening was my therapy and metaphor for the cycles of life, death and rebirth throughout the corresponding seasons.  With my last radiation treatment on March 17, 2009, I felt a deep connection with everything that blossomed around me as I started to heal. Spring is my celebration of life.
Laurie Andreoni (@turban_diva)

Spring represents a rebirth, so I feel this is a special time to think about what one can do to renew his/her life in some way. Stop to appreciate nature and all its glory and do something that is good for your body. Whether you are going through treatment or are finished with it, do what you can to make life meaningful to you -- whether it be reading a good book, taking a short walk on a beautiful day, or simply meditating.
Beth L. Gainer, Writer and Patient Advocate
"Calling the Shots"

 Spring reminds me of our essential elements.  Each year there’s that ‘first day’ in the flower beds when I return, literally to the earth.  I take my hand spade and turn the soil over,  pulling out the weeds (always the first to grow), and pinching off dead blossoms and branches.  It’s physical, it’s spiritual.  There is something sacred in anticipating the creation of a new garden.  Such joy! 
Jody Schoger

Friday, March 19, 2010

‘E’ is for Empowered

Are you an E-patient?
Sharing Strength editor Colleen Young writes, if so, you are part of a health care revolution!

Do you look for health information on the Internet and discuss what you find with your doctor? Have you ever read a posting on a discussion forum and thought, “Yeah, I have that side effect too. I’m going to talk to my doctor about it”? Then you are an e-patient—equipped, enabled, empowered and engaged in your health and your health-care decisions.

According to Wikipedia, “e-Patients are health consumers who use the Internet to gather information about a medical condition of particular interest to them. The term encompasses both those who seek online guidance for their own ailments and the friends and family members (e-Caregivers) who go online on their behalf. e-Patients report two effects of their online health research: ‘better health information and services, and different (but not always better) relationships with their doctors.’”
Patients no longer want to receive health care passively. We want access to information and to our medical records, and we want to connect and collaborate with our peers.

And, health-care providers are beginning to understand that patient knowledge counts. The authors of the paper e-Patients: How they can help us heal healthcare acknowledged that health-care providers
  • should recognize that e-patients are valuable contributors to health care.
  • have overestimated the hazards of imperfect online health information. Patients are capable of gathering quality health information online.
  • have underestimated patients’ ability to provide useful online resources.
  • can no longer go it alone. The most effective way to improve health care is to make it more collaborative.
Collective knowledge and experience shared online is valuable. Health-care providers need to embrace the wisdom of community knowledge. Together we can build confidence in participatory medicine—a cooperative model of health care that encourages and expects the active involvement of patients, caregivers and health-care providers.

You can take an active role in your cancer care. Here are a few tips to get you started.
  • Gather information.
    When using the Internet, make sure the information is accurate, objective and trustworthy. SharingStrength’s Resource Library of credible breast cancer resources is a good place to start.
  • Tap into community knowledge.
    Breast cancer support groups and online communities are a great place to ask questions and get answers. 
  • Keep track of your health record.
    Maintaining an electronic or hard copy of your own health record can be useful when talking to your cancer care team and coordinating your care.
  • Talk to your health-care provider.
    Tell your doctor that you want to take an active role in your care. Ask questions. Recommend websites to your cancer care team

Thursday, March 18, 2010

The revolution will be...tweeted?

Very smart guest post on by our own @JodyMS about social networking and the future of medicine. She reports from a conference of smartypants and visionaries.

Well worth checking out...and hey, while you are on that page just keep scrolling down, and read the other fabulous guest bloggers!

Wednesday, March 17, 2010

Do you believe in miracles?

Editor's Note: Tami Boehmer is a bundle of energy. As you will read in her story, her stage 4 diagnosis motivated her to start writing an inspiring book and blog. 

After years of working in public relations at hospitals and other health care institutions, I was suddenly thrust into life as a patient.
On February 4, 2008, I learned I had a recurrence of breast cancer–just months after my five-year, cancer-free anniversary. This time I was told it spread to distant lymph nodes and my liver. One doctor told me, “You could live two years or 20 years, but you’ll die from breast cancer.”

At first I was devastated, but soon got angry. How does she know how long I have to live? She doesn’t know me and how determined I am!
I needed to talk with other cancer survivors who didn’t accept doctors’ predictions--people who beat the odds. And I was determined to find out how they did it so I could do it myself.  So I started searching for “miracle survivors” nationwide for my book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds. I found them through reporter networks, the Lance Armstrong Foundation, and mentioning my project to everyone I knew. I didn’t limit my search to breast cancer survivors; my only requirement was having a dire prognosis and an incredible drive to overcome it.
Their stories helped drown out my fears and negative thinking. I knew if they could do it, I could too. I wanted to share their inspirational stories with others.

I also started a blog,, to find more stories, and share them and things that have contributed to my health and changing outlook. A couple of visitors have even connected with survivors with the same cancer diagnosis as a result of the blog.
I feel as if I’m fulfilling God’s purpose for me through this work. It has taught me cancer doesn’t have to be a death sentence. It can be the start of a life sentence, though. Like the people I’ve interviewed, cancer was the beginning of a new way; one of appreciation, hope, and discovering one’s potential.
Tami is also a member of the support group Pink Ribbon Girls, and recently attended the Young Survivor's Conference in Atlanta.

Tuesday, March 16, 2010

Despite Cancer: A Colorful World

Really striking images from the late artist and cancer patient  Hollis Sigler. 
Image courtesy of the Chicago Cultural Center.
Read and see more

Must read for cancer writers and bloggers

During my guest blogging stint at I enjoyed a good conversation with my editor about how quickly we run out of words when we are writing about cancer.
Even if you use every cliche and metaphor in the book, by the end of an article it's a struggle to find new "attributions".
I loved this article from the New York Times on just that dillema.

image from

Sunday, March 14, 2010

The Curse of Hair

Editor's Note: For many women the most traumatic part of cancer treatment is losing their hair. But the experience is not universal, not every treatment plan has this side effect.  Beth Gainer writes, that can be a mixed blessing.


Billy Crystal, in his popular Saturday Night Live skit "Fernando's Hideaway," made the following mantra famous: "It's better to look good than feel good." Like many viewers, I found this hilarious.

Then came breast cancer – and chemotherapy and radiation. I did not lose my hair during treatments, but I did lose a significant amount of weight.

I looked fabulous, but I was unbearably ill.

“It’s better to look good than feel good”?

Not so hilarious anymore.

At first, I felt lucky not to have lost my hair. But because I was young and looked good despite having cancer, people would trivialize my condition. Many would forget I was ill and were shocked when my cognitive skills were not up to par. I got labeled as being suddenly “stupid.”

Others were stunned when I described how terrible I felt. “But you look so good,” they would say to me, as if that could comfort me. Really shocking was that many women who knew I was fighting cancer were jealous of my flat tummy and my ability to lose weight so quickly.

I would tell them that I could hardly eat anything because I was so sick from cancer treatments, but who listens to a woman with a full head of hair?

Ironically, my hair became a curse, and I found myself wishing that I had gone bald after all – for if one looks ill, others realize that this cancer stuff is for real.

In the end, I don’t blame those who made insensitive remarks. We live in a society that perceives if one looks good, then he or she feels good.

This is why if I could go back in time, the first thing I would do is shave my head and eyebrows and, if possible, sport my baldness with no head covering. I never wanted pity, but I realize that unless one looks sick, it’s easier for people to bury their collective heads in the sand and reassure themselves that the sickness doesn’t exist.

Breast cancer really drove home an important point: it’s far better to feel good than look good.

Beth L. Gainer has had numerous publications, including an essay in the anthology Voices of Breast Cancer. Her popular Calling the Shots blog at offers information and advice on how to navigate the medical system. She is a contributing member of Medpedia and Navigating Cancer.

What do you think? Let us know in our comments section!

Primetime plotline benefits British women

I watch my share of BBC America, but let's face it Coronation Street holds a place in British culture that is hard for we Yanks to comprehend.

However the plot line where a character gets breast cancer seems to be making an impact on real life women.

Saturday, March 13, 2010

The Loop List: Humor Edition

Breast cancer is not cute or funny. Truly we understand that. However, people with cancer or any other illness still have a sense of humor, and some medical professionals even believe there can be a health benefit to laughing. (As long as you don't have stitches. Ironic that.)

I have a real respect for people who incorporate humor into breast cancer awareness, fund raising, or helping patients.

And with that, we kick off a unique edition of the Loop List.

These guys go into the wacky ways to raise money for a cure HALL OF FAME.  They are sort of a Beatles cover band with a breasty twist. I am not ever sure breasty is a word.

The website made me literally laugh out loud. PLUS they are raising money for the Breast Cancer Research Foundation.

O.K., this is another one you will just have to see to believe. Dusty Showers is the "second baseman".
He is basically a guy who dresses up in a pink bra to liven up breast cancer fundraisers. I am sure I did not quite explain that right, but he has a youtube channel and more.

This is a comedy tour that is also a Susan G. Komen fund-raiser.
I wanted to feature a book author who writes about breast cancer with humor. There were a lot of choices, there are some jokey cartoon books which have their place.

But Katherine Russell Rich blazed a lot of trails with her book, "The Red Devil." She is a long term stage 4 survivor, and has a new book out about her experiences in India.
And last but not least! Our buddy Chemobabe is selling t-shirts to help pay for her treatment, and shows a lot of moxie with this pose!
Wear these to your next fundraiser and you will stand out in the sea of pink!
Also good for the fetish crowd. 

So live from New York, it's Saturday Night....and that wraps up this weeks's Loop List!


Friday, March 12, 2010

A little light reading

Ah March.

My least favorite month of the year.

I don't mind winter, really I don't, but my snowshoes are done for the season. Something about the grey, wet, windy weather makes this month hard for me. Although I loved living in Maine, they actually have March weather about 8 months a year.

I've been done with radiation about a month and my moods remind me of the "Wheel of Fortune." One moment I feel like I have hit the jackpot, the next I feel bankrupt.

So I have decided I need a little more help than I can find on the web. I now own brand new copies of:

- Our own Hester Hill Schnipper's "After Breast Cancer, A Common-Sense Guide to Life after Treatment."
-"Living Well Beyond Breast Cancer" by BreastCancer.Org founder Marisa Weiss M.D.
-"Coping with the Emotional Impact of Cancer" by Neil A. Fiore, Ph.D.
and "The Concise Family Seder" just in case nobody invites me for Passover.

I am actually looking forward to a Tonya vs. Nancy, Angelina vs. Jen, Crystal vs. Alexis, type rumble between Hester and Marisa Weiss's books. So far, Hester's is lighter and easier to take on the subway, but hey, I won't judge a book by it's heft or cover.


Free Foobies for Athletes

I know we have a decent number of readers in the U.K., where it appears you can now get an "sport 'n swim" breast prosthesis for free!

Thursday, March 11, 2010

I'm Deb. I'm a constituent and I'm a survivor.

Speaking these words was the beginning of my first advocacy. I can't even begin to describe the way I felt when I heard those words coming out of my mouth. It was the first time I'd ever called myself a survivor. A survivor. It was so powerful to me as well as the people around me. It's a word that when uttered garners attention.

I went on to speak to an audience of 5 legislative aids and 3 fellow survivors about our support for A.8278A Kellner et al,; S5000A Duane. It's a bill to limit out-of-pocket cost of prescription drugs. It was one of the 3 topics that supported the legislative agenda of the NY State Breast Cancer Network.

I gave a quick summary of the bill. I spoke about how if it was passed it would prohibit health insurers and HMOs from creating specialty tiers within their prescription drug formularies. I spoke about how a number of insurance agencies across the country had already adapted a 4th tier, where the co-pay wasn't a fixed fee, but a percentage of the actual cost of the drug. Allowing this 4th tier limits people with life-threatening diseases and chronic illnesses access to drugs that can dramatically improve quality of life during the duration of their lives. As an example specific to metastatic breast cancer, someone could see their co-pay increase from $50 to $725 at a 25% co-pay, or as high as $957 for a 33% co-pay. Our position is that New York should take the lead in this area of health care reform and pass this important legislation.

Earlier that day, I had boarded a bus in Times Square that was headed for Albany. The state capitol of New York. The bus had women young and old, all brought together by breast cancer. We were all on our way to attend the NY State Breast Cancer Network's l2th Annual Advocacy Day. The network is a statewide coalition of 25 groups. They focus on all aspects of breast cancer research, prevention, detection, treatment and policy concerns. Their mission is to support, educate and advocate.

On the bus were women from SHARE, YSC, and WAR (Women at Risk). Some were new faces and some I had met a few days earlier at a training for the event. We were allowed to sleep for a while and were woken up an hour before arrival for additional training. We had all previously received packets of detailed information and summary sheets of the group's issues. Our tasks for the day were to meet with State Senators or their Aids and make our views known. We were targeting 3 specific issues and were there only for those issues. We were not to deviate from the topics. We were given guidelines as to what was expected behavior of an advocate and what was inappropriate. In each of our meetings we would have assigned tasks. Sometimes we'd speak about an issue, other times we'd take notes or be a timekeeper.

When we arrived in Albany, we headed to "The Well" in the LOB (Legislative Office Building). Breakfast was laid out for us and the other regional members of the network. After a welcome, we were treated to a presentation by Mark Scherzer entitled "What's Next in Health Care Reform for New Yorkers". I say treated because he was able to help me understand the Health Care Reform Bills that are currently in the House and Senate, what they entail and how they will affect New York State if either is passed. I also learned that NYS is the "gold standard" for some of the proposed legislation.

On an aside, I couldn't help but smile when I noticed that the backs of the chairs said "ASSY". I know it stands for assembly but had to have a picture of me taken in the assy chair :)

Then, we had a review of the Memos of Support. Besides the co-pay bill, there were memos of support regarding the restriction of Bisphenol A in children's products and also on safe and sustainable green purchasing.  The review was followed by a Q & A sesssion and advocacy tips. After lunch, we were off to meet with our legislatures.

I was thrilled to have the opportunity to meet Tom Duane. He is my New York State Senator, and also responsible for the co-pay bill. Unfortunately, he had to run off to a senate session so we met with his aid. As we went through our agenda, she felt that his views were in line with ours. As we were leaving, she confided in us that her mother was a survivor.

Overall, it was such a great experience. I find myself wanting to be more involved. Perhaps on a city level and definitely on the national level. I'm hoping to be able to work the NBCC conference in May into my schedule. I can't wait to advocate again. I want to be an active participant in making the future a better place for all of us.


Wednesday, March 10, 2010

An anchor's story: Why I had my first mammogram on television

Editor's note: This morning Harry Smith shared his colonoscopy with a live national television audience on CBS. I give him a lot of credit. However he's not the first news anchor to share a medical test on the air. Neile Jones of KNWA-TV in Fayetteville, Arkansas included her viewers in a very personal moment: her first mammogram. In this essay she writes about what the experience was like before, during, and after.


I went to my boss a few years ago and told him I wanted to get my mammogram on television. At the time, I'd never had a mammogram and, with my family history, I knew I needed to get one. I was so nervous I even asked my friend, and Komen Ozark Affiliate Director, Alison Levin, to come with me.

In my mind, all this time I'd been doing stories with men and women who were sharing personal experiences with cancer in order to help others. I figured the best way I could forward that effort would be to take KNWA viewers through the screening mammogram process. I thought if I could get a mammogram with a photographer in the room, then maybe someone else might be inspired to get the screening mammogram that just might help save his or her life.

I have to admit I had some concerns as I walked into The Breast Center of Northwest Arkansas. My grandmother had breast cancer at a young age, and I knew that I might not get good news as a result of the screening. She was the reason I first became involved with Susan G Komen. She didn't have the options we have now. As I thought about her and all my friends and family, I quickly decided that the alternative, not knowing if I had the disease, would be even worse.

So the station called our sister station in Little Rock, and a female photographer came to Northwest Arkansas and went with me for my appointment. You know, it's not the most comfortable way to meet someone, but she quickly became a friend. We filled out paperwork, then I changed into a drape-type garment that would allow the person taking my mammogram images to shift the cloth so my breast could be placed into the necessary positions. I was given a robe to walk from the changing room to the room where my mammogram images would be taken.

Soon I was being position by a person I'd just met. She was very kind and respectful, always telling me why and how she was doing things. She adjusted the paddles that would hold my breast in place, and I was told to hold still as a beeping sound came from behind me to tell me the images were being taken. I was positioned several different ways so my doctor could see what might be necessary to inform me about my breast health.

I can't say the paddles or even the slight squeeze hurt, but I can say having someone shoot video of all this was uncomfortable. I knew I was exposed, no pun intended, and I pretty much couldn't wait to get myself wrapped back up in my robe again. I moved so much we ended up shooting at least one of the images again. That was probably because I wouldn't stop talking because I was nervous.

The whole process happened so quickly. I mean, the screening itself only took 10 or 15 minutes. Because the Breast Center knew we were doing a story, the doctor met with me immediately and explained my results to me. On that day, I got a clean bill of health and walked away feeling better because I was now armed with information I didn't have before the screening.

As we came back to the station, I couldn't wait to see the video and start piecing this story together. The photographer had been so careful you really couldn't see anything inappropriate, so my editing didn't take long at all.

I know a lot of people who think I was crazy to share this experience, but for me it was a way to show people how easy getting a mammogram is and why this screening is so important. I guess I felt it was a small way to show support for those fighting breast cancer and their loved ones. I still get teased sometimes, I've even been called "Mammogram Jones" by a few coworkers, but it's all in fun.

We all know someone who has fought or is fighting cancer. Sure I was uncomfortable, but that's nothing compared to what so many people deal with day in and day out: chemo, radiation, mastectomy, lumpectomy... the list goes on and on. I guess I just wanted to help where I could by sharing information that might somehow help save a life.
Neile Jones is primary co-anchor of the evening newscasts at KNWA-TV in Arkansas. 

She works closely with the Ozark affiliate of the Susan G. Komen for The Cure Foundation. Neile received National recognition from the Susan G. Komen Foundation for her efforts and was awarded the 2005 Cameo award for her volunteerism. In 2008 Neile was named a Yoplait Champion for her efforts in the fight against breast cancer.
She continues her efforts with an annual live broadcast of her local Race for the Cure, to donate to her team click here.

Neile has a dual Master's degree in Human Resources and Development and Management from Webster University.