Leaving on an evening plane from Georgia (we hope)

Ah more travel delays, but while my battery holds out... a few last day impressions!
Fargo-Moorhead YSC, I was very impressed by your group. Great showing, and it was fun sharing cupcakes with you at the closing ceremony.

Terrific session about living life fully for women with advanced breast cancer. Can not wait to write up my notes and post them, a lot of wisdom was shared.

I wish I had time to meet everyone in the exhibit hall. If I did not, feel free to drop us a line and say hi.
Great chat with "Feel your boobies" and others.

As the sun sets over the eastern seabord Deb and I are on our way back to NYC. We are really looking forward to writing more about what we experienced.


Bye for now y'all.

Suzanne
Photos by Suzanne and Latina Starling

Bedtime stories

After a fun evening of dancing, (and Atlanta knows how to party), a group of about a dozen of us gathered in one of the hotel's lounges to share snacks and stories.

Most cancer survivors do not like to be told they are strong. Many point out that none of us chose this, we just did what we had to do. So instead I will call my new friends graceful.

The grace to look beautiful with a head of scraggly hair. The grace to comfort a woman terrified of going though treatment. The grace to appreciate someone else's pain and fear, even if they had a smaller tumor or fewer nodes or a better prognosis.

I'll be honest, before I was diagnosed, when I saw a cancer patient, my instinct was to cast my glance in the other direction. I can still understand why someone might find seeing so many young women ill disturbing. But if you look away, you miss the beauty.

Suzanne

New Cure Today post

This is my Saturday evening post, Yin, yang, and YSC. 
How to balance the hope, humor, sadness, and inspiration of the conference.
http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/guest
Photo by Latina Starling

Pink Pajama Playtime

Well, one of the big differences between Deb and I is that she is an early bird and I am a night owl. So I am blogging in the bathroom while she sleeps.

Tonight was the YSC pajama party, basically a super size Pure Romance party. The company is esentially the Tupperware of marital aids.

Founder Patty Brisben is a heck of a pitch lady, the Mary Kay of the millennium.  One thing she said really caught my attention, "The things you did before are not going to work anymore, you have to try new things."

Of course she was speaking of sensuality after breast cancer, but in a way it sums up the whole experience. Every single lady in that room has had to deal with a whole heap of change.

I've been to parties like this before, they are fun in a way. I remember seeing a room of Minnesota grannies giggle over massage oil.

But when you put Patty's well practiced patter in the context of cancer it becomes almost radical. Behind all those pink pajamas is a lot of loss. So the message that romance and pleasure can be rediscovered is not a trivial one at all. Seeing women, some bald and breastless, gleefully grasping at a free a neon vibrator is a surprising and life affirming experience. A moment of rebirth.

As Patty said, you have to try new things.

Suzanne
Photo by Latina Starling

I knew they were out there

Wow.
I am sorta kinda speechless.
And that's a lot if you know me.

Yes, I missed registration, I missed the first workshop, and tragically welcome cocktails, but somehow I parted the uprights of a vicious snowstorm and I made it.

Seeing so many women with breast cancer my age and younger is jaw-dropping.
I knew they were out there, but seeing them, seeing US, is another story.
I am a little sad, a little mad, a little happy, and a lot tired. 

The pictures, (and Deb has the camera), are what you would expect, scarves, and wigs, and pink t-shirts of all stripes. But I am so used to being the exception, the person people are surprised has cancer, it's very interesting to just be normal.
Suzanne

YSC or Bust!

Well the snow has made travel to the YSC conference
tricky. Deb should be on her way soon, I (Suzanne) am (allegedly) on a 3PM flight.Some big news though. Besides serving as your trusty editor, I will be blogging for curetoday.com.

I hope I am ready for the big time. They have promised to check my spelling though, so that's a relief.

Keep your fingers crossed, for travel plans, otherwise the good readers of Cure are going to get top notch coverage of LaGuardia airport in the snow.
Photo from youngsurvivorsconference.org

Creativity makes me smile!

Like a ping- pong ball I seem to be bouncing between stories about science and folksy breast cancer awareness projects.

Still, I get a kick out of seeing people bring their own creativity to keep fund raising efforts fresh.  So thumbs up to the Alabama residents who participated in a bra making contest to benefit a local cancer center.

 

Love this one!
Suzanne
Photo from Tuscaloosanews.com

A new way of looking at cancer

Intersting story in Forbes magazine about how one prominent oncologist believes the key to a breast cancer cure lies in a mathematical equation.
http://www.forbes.com/forbes/2010/0315/opinions-health-cancer-larry-norton-ideas-opinions_2.html 

Big rig painted pink for BC research

I'll admit it. I have a split personality when it comes to the color pink. One minute I am complaining about the pink cans of tuna in the supermarket, but then I find myself utterly charmed by this.

http://www.nbc11news.com/localnews/headlines/85259117.html

A natural gas rig painted pink to raise money for breast cancer research. There is something about those Colorado "roughnecks' going to work every day on a pink rig that makes me smile.

I hope that there is some woman with breast cancer who lives nearby who gets a big smile out of seeing that platform. I realize that the 10,000 dollars a year it raises is a drop in the bucket, but sometimes a little sign of support is priceless.

Suzanne
image from KKCO-TV, Grand Junction, Colorado

update: in a somewhat similar vein Kentucky has a pretty sweet pink abulance, though to me it looks like a candy truck!
http://www.wbko.com/news/headlines/85137677.html?storySection=comments

Article on Aromatase Inhibitor resistance

Since several of you have been interested in the Tamoxifen article I thought I would post this as well from Science Daily.  It's not quite as easy to read as the other article.Suzanne

http://www.sciencedaily.com/releases/2010/02/100209131639.htm

Know Your Bitter Melons

Too much blogging may have made me "loopy", but after reading today's headlines about bitter melon possibly being a breast cancer fighter I thought, um, what exactly is a bitter melon?

And in the sort of moment journalists love...Voila!
The National Bitter Melon Council has a website. 
http://bittermelon.org/
My gosh, they even have forums like Bitter Melon Homeopathy for Urban Renewal.

Though I am no scientist, it seems in general fruits and vegetables are good thing to add to your diet, and I am always excited to learn that they may have more benefits than expected.
Here is Memorial Sloan-Kettering's web page on bitter melon.

But most fabulous of all here is a link to a fun video on how to cook with bitter melon! 

Today I am loving the world wide web.
Suzanne

Brits claim breakthrough in Tamoxifen resistance

Lots of science news coming out this week. I thought this article from the BBC about tamoxifen would be of interest to many of you.

UK scientists say they have discovered why some women fail to respond to breast cancer treatment, and it is a gene error they believe they can fix.

Tamoxifen is given to most women diagnosed with breast cancer to prevent the cancer returning.

But not all women respond to the drug - experts estimate a third get no benefit.

(Read more)

Author hopes new book will aid decisions about BRCA tests

The Santa Monica Daily Press reports on how a local author turned her experience with BRCA testing into a resource for other women. 

As Joi Morris knows, the truth can be scary. However, Morris recently made learning the truth about heightened risks of breast and ovarian cancer caused by gene mutations a little easier through her book, "Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer." The book, co-authored by Dr. Ora Gordon, was inspired by Morris' own high-risk experience.
(read more)

Mammogram survey concerns some

The Avon Foundation for Women today released a survey of mammogram programs for uninsured woment. The survey's authors point to screening cutbacks in some states.
(read more)

Breast cancer cluster in TV newsroom

I will admit I keep close tabs on fellow broadcast journalists who have breast cancer. But I have never seen anything like this story from Austrialia, up to 18 women who worked in a single TV newsroom have been diagnosed.
It's very tempting as a blogger to speculate on what the cause could be. Odd shifts, lifestyle, or something in the water?
I'm glad they are building a new facility.

Suzanne

Wisconsin woman is "flush" with cash for breast cancer research

Alright, I admit this one may be a little on the silly side. But you do have to remember Northeast Wisconsin is home to Kimberly-Clark maker of many paper products.
Plus I used to live there. So what the heck, flush for the cure!
http://www.postcrescent.com/article/20100221/APC0401/2210547

Image from greenthinkers.org

Top 10 ways to "bring sexy back” after having breast cancer

Editor's note: one of the most vexing things about dealing with breast cancer is the impact on your marriage/relationship/dating/love life!

Thank you Hester for these sizzling tips!

1. Remember that, in or out of bed, it is how you love and whom you are, not how you look, that matters most.
2. Take the pressure off: agree just to snuggle.
3. Shower or bathe together.
4. Experiment with massage oils.
5. Give and receive back rubs, foot massages, as many hugs as possible.
6. Consider wearing a lacy camisole if you are self-conscious about your breasts (or lack thereof)
7. Consider wearing a teddy with a crotch that can be unsnapped.
8. If vaginal dryness is a problem, try a variety of lubricants to discover what works best for you.
9. Go away together for an overnight or a weekend.
10. Watch an x-rated movie, read a steamy novel, fantasize.
    

Hester Hill Schnipper, LICSW
Chief, Oncology Social Work
Beth Israel Deaconess Medical Center, Boston
survivor of two breast cancers

Want to read more from Hester? She has a very valuable and informative blog. She is also the author of "After Breast Cancer" which you can pick up in our Amazon store just a few inches away.

Florida news anchor inspires marathon runners

In the days before my diagnosis I applied for an anchor/reporter job in Jacksonville, Florida. What I did not know at the time, was that same station was home to Donna Deegan, an anchor who really "leads the pack," (the pun is intended) in fighting breast cancer.

A three time survivor, Deegan organized a full length marathon in Jacksonville Beach which supports research at the local Mayo Medical center, and her own charitable foundation. The event is called the 26.2 with Donna: the national marathon to finish breast cancer. The website is www.breastcancermarathon.com.

The race, which is winding up as I write, sounds spectacular. While I seriously doubt whether I personally could run that far, the image is inspiring. Deegan's cancer is stage 4, but she is a role model for women across the country fighting the disease.  I really enjoyed reading this profile of her from the Seattle Times.

Suzanne

Here is a link to some of the early coverage of the event.

Here is a link to a wrap up story

Photo from Greg Gilbert/The Seattle Times

Benefits of yoga for bc survivors

Here is an interesting article about special yoga programs for breast cancer survivors.

Date a Hunk for the Cure!!

Well, it's the weekend and I am in a very whimsical mood. But for single gals this might be the best fund raiser ever! Hats off to the ladies in San Diego for this idea.
http://www.signonsandiego.com/news/2010/feb/18/date-lawman-help-breast-cancer-research/

Big Pink Tractor

This one is for the pink lovers only...but it is a very cute photo.
It really made me smile. A very "country" way to raise funds for a local breast cancer organization.
from The Hereford Times

Adapting exercise for breast cancer survivors

Before I had breast cancer I was a pretty enthusiastic about exercise. I wasn't going to win any awards, but weights, walking, social dance, yoga, and swimming were all part of my life.

Since my surgery I have been timid, spooked by the spectre of lymphedema, and hampered by some limits on my range of motion.

I am looking forward to trying some exercise classes designed for breast cancer survivors.(Especially if they are not too early in the morning!) Here is a pretty good article about how such classes can be beneficial.

Pink Valentine

Great post on "But doctor I hate pink" about relationships, love, and Valentine's day

A live well lived

Travel writer and breast cancer patient Mary Herczog loved New Orleans, so her friends feel it was appropriate that she passed away on Fat Tuesday.

Herczog, 45, leaves behind a vibrant legacy of writing, in her Los Angeles Times series, her travel books, her website cancerchick.com, and her travel site PluckySurvivors.com.

Since several of her books sit on my shelves, I am sorry to be sharing her work with you on the occasion of her passing. However, if you get a chance to read some of her stuff, it's hard to be too sad. She was truly a joyous soul. Even her posts about her disease were called "Merry Maladies."

For example, her blog post about hospice care also described the tasty cookie she was eating. In her twelve years with bc, she packed in a wonderful array of experiences, and lived a rich life. Earlier this month she was awarded a masters degree in philosophy of theology and religion.

In short, Mary left behind some really valuable lessons for the rest of us, about how to live like you really mean it, cancer be dammed.

Suzanne

Newsradio veteran reports on his own breast cancer

For those of us who live in New York City 1010 WINS-AM is a familiar frequency. Now one of their employees, Phil Pilato is speaking out about his bout with breast cancer.

His second article deals with the issue of breaking the news to friends, family, and co-workers.

I believe he is scheduled for surgery this week, we wish him all the best.

Suzanne

Young Survivors Conference here we come

Deb and I are very excited to be heading to Atlanta next week, and we are really looking forward to meeting some of our readers. If you are a tweeter the hashtag is #YngSurvConf. If you have never tried twitter before, it works really well at a conference to keep people in touch and let people know where you are. We are hoping to do a bit of live blogging, and maybe even post a few pictures.

See you there!
http://www.youngsurvivorsconference.org/

Researchers work to clear up confusion about lymphedema

One of the most bewildering parts of being a breast cancer patient is conflicting and confusing information about lymphedema. I can not think of any other medical situation where the advice and guidelines are so inconsistent, and that's before you throw in information from the internet.

I was very glad to read this report that researchers at the University of Missouri are leading the American Lymphedema Framework Project, to develop a standard of care.

Suzanne
image from beyondbasicsphysicaltherapy.com

Making sense of the studies: Aspirin and more

Nearly every day I come across some sort of headline reporting research news about breast cancer. Over the past six weeks there have been headlines about mangoes and turmeric among others.

When I worked in local news, it was pretty accepted practice to report study results without a whole lot of context. You can't get in much trouble saying, "The New England Journal of medicine reports......so on and so forth."

Since Loop is designed for the breast cancer community we need to be a little more careful. If a study says exercise and vegetables are good for you, well, then I can pass it along and let the reader and her doctor put it into context.

Not everything is so simple. In face turmeric is not suggested during chemotherapy, according to Memorial Sloan-Kettering's website.  Mango on the other hand seems like a pretty tasty and reasonable thing to add to a diet, though I should add neither Deb nor Suzanne are any kind of medical professionals. (Suzanne actually used to try to get out of health stories when she was a reporter, to be honest.)

Which brings us to this week's headlines about aspirin. It is very easy to get excited about the prospect that aspirin could cut the risk of metastasis for breast cancer survivors. Almost too good to be true. And if I were producing a local newscast for a general audience, I would have no problem repeating the study on the air.

For cancer patients however, the story about aspirin is no passing fancy. As always, the best bet in to talk to your doctor, and I bet a lot of oncologists will be peppered with questions about this.

Meanwhile however, peruse this article from the Los Angeles Times. I think it does a very good job of putting the tantalizing research results into a cautious context.

Here is another article with a good q&a:http://www.foxnews.com/story/0,2933,586443,00.html

Update: U.S. News and World Report weighs in: http://www.usnews.com/health/articles/2010/02/18/aspirin-a-blockbuster-therapy-for-breast-cancer-survivors.html 

Suzanne

Update on Michigan Mother and Daughter

Another story from the Detroit Free Press about Rachel and Regina Peterson, a mother and daughter who are both being treated for triple negative breast cancer. The initial story in January featured a dramatic slideshow, and discussed their insurance difficulties.
 
This update checks in on their progress, and although they face a heavy burden, the family has received support from the community.

Loop List: Looking for Adventure!

One good way to move forward in life is to add a little taste of adventure.

I learned this first hand when I tried snowmobiling after a tough breakup. I was terrified, but the minute I got control of the sled, I felt like a new woman. There are many sports that have special programs to help breast cancer patients recover or to raise funds. Here are a few exciting choices.

http://www.b4bc.org/
O.K. even if you would never consider snowboarding, Boarding 4 Breast Cancer has a fabulous breast cancer awareness website, one of the best I've seen.  It's crisp, contemporary, and upbeat.
I love that they encourage both self exams and an active lifestyle. I found it positively inspiring. Well done ladies.

http://www.mushforacure.com/
Another one of my most memorable life experiences was dog sledding. Here is a link to an upcoming dog sledding breast cancer fundraiser. How fun!

http://www.castingforrecovery.org/
You don't need snow to try something new. Fishing program Casting For Recovery has an excellent reputation, and offers adventures free of charge to breast cancer survivors.

http://www.reelandheal.com/
I also like the look of this organizations web site, it offers fly fishing programs. They have activities for post-cancer couples, something that is very hard to find.
 

http://www.fhcrc.org/about/ne/events/climb/index.html
If you are ready for a big adventure check out this site. Climb to Fight Breast Cancer offers some amazing programs, obviously not all of them are for beginners. Very nicely executed and inspiring web site.

So here's to adventure and making the most of the rest of our lives! Suzanne

What's have you tried? Did I miss anything? Leave your stories and ideas in the comments section!

Mammogram controversy spurs doctor-patient conversations

Interesting story in the New York Times about a doctor's dialogue with patients over mammograms. The reporter points to some best-case-scenarios, well reasoned conversations, and thoughtful compromises.

Which is all good.

But I still worry about other women who will just opt out of testing, or do not have physicians who have the time or expertise to sort through the confusion. On a personal note, I also keep hoping that the mammogram debate will actually encourage the use and development of other types of tests.

Suzanne


http://www.nytimes.com/2010/02/16/health/16mamm-.html

A new look

Editor's note:One of our favorite bloggers is Chemobabe, who rocks the bald look. But even the brazenly bare-headed sometimes crave cover. Suzanne

"Bald like Me"
I caved in and got a wig. There were two sources of pressure for me. First, the daughter that everybody says looks just like me has been asking me to get a wig since she learned about the alopecia that came with chemotherapy. Then, although I thought I was going to be a brazen cancer person and go around with my comfy headwraps, never mind what everybody else thought, I got weary of walking around as Cancer incarnate.  read more

Bras and breast cancer

Quick article from the New York Times about bras and breast cancer.
The upshot is that experts say, wearing a bra is not hazardous to your health.
http://www.nytimes.com/2010/02/16/science/16qna.html
image from oopshi.com

The Power of Pink

This story from the Star-Telegram newspaper is one of the most thoughtful I've read on the subject of "cause marketing." It looks at both the benefits and pitfalls to companies who incorporate charities like breast cancer organizations into their brands.
http://www.star-telegram.com/business/story/1966310.html

Dating Post Diagnosis - Six Practical Tips

Editor's Note: For many women breast cancer can feel like a double whammy, an assault on our health and femininity. Throw in being single, and it gets even trickier. So I am so pleased to have this article on dating by Dr. Jan Gurley. Doc Gurley is not just a medical expert she is really funny! So enjoy, and happy Valentine's Day! Suzanne

When Avatar -esque aliens finally descend on us from another multi-verse, they will undoubtedly believe that Valentine's Day celebrates the mating rituals of the svelte, the pristine, the adored, and the orthodontically flawless. In other words, we take a day to honor sex lives of the Photoshopped. Because that's what you see everywhere, isn't it?

Our telescoping media-porthole onto the world has no room for people who wheeze, or snort, or gurgle adenoidally - not even for people who are frankly, well, (and there's no other way to put this) human. We all know that only beautiful people are supposed to kiss with any passion. Unless, of course, an audience needs some comic relief.

So where, after a lifetime of multimedia disgust-cultivation for the tiniest imperfection, does that leave anyone recently hit with a major diagnosis? Especially when we're talking about that most brutal of combinations - a disease whose treatment leaves you altered physically in some way, combined with the cut-throat environment of the dating scene?

But hey, some of you may be asking yourselves right about now, what qualifies Doc Gurley, or frankly, any other doctor, to talk about this issue?

To which I retort, cuttingly, um, good question. See, there's probably not a single other group of people who could out-geek the medical profession. And usually, when it comes to doctors, we're not talking about the adorable sub-genre of Juno-nerdishness, but a more socially stunted flavor. Because even if a budding pre-doctor began his/her existence with an above-average quota of insight and savvy, that training-decade of severe isolation and stress (during peak dating years, BTW) tends to permanently impair even the most promising. In other words, even social redwoods are, through training, emotionally pruned into Bonsai distortions. Which begs the question - is there any doctor, anywhere, ever, who should be giving dating advice?

Well, when you put it that way, maybe not. But see, here's the thing about medicine. There's no topic off-limits. And you do your patients a huge disservice by rebuffing, or failing to at least try to learn how to help. Even if you are emotionally reclusive, the day will come, sooner or later, when someone - a patient, a friend - cannot help themselves and breaks down, sobbing in an exam room, asking some of life's most raw and painful questions.

But isn't this a "social" issue, after all? Why should a doctor care? Or intervene? Why not just hand over the tissues and nervously re-arrange a jar of tongue depressors until the emotional storm passes? Hey, plenty of doctors do. But the problem is, for many patients, when it's time to face recovery, and the battle for survival has receded a bit, self-doubt is a disease that is epidemic, and virulent. Left unchecked, it can mutate into self-loathing, and then leave permanent emotional scars that can disable.

So how does your average, ill-prepared doctor learn what might help patients? Here's how - you channel your geekiness and put it to good use. You survey those who are better-informed. You take notes. You ask the people who succeeded how they did it. You look for patterns and methods and check them for internal validity. You brainstorm with your patients (experts). And then, of course, if there's not much out there on the topic, you write an article about it (ahem).

So here, in honor of love, are some practical tips on how to re-dip your toe into the dating scene after a major diagnosis.

1) Take inventory - There's nothing like a brush with near-death to force you to open your emotional closet, get out the bar-code scanner and see how your supplies are running. Is your resilience tapped out? Are you feeling vulnerable? Has there been a run on hope - so much so that your stores are severely depleted? Have your friends, family and loved ones rushed to replenish your stock? Do you see your treasures beginning to rebound? These are all important things to know. No one indicator means that you shouldn't reach out to others, whether in the dating scene or in other settings. but it's important to know where you stand before taking that first plunge post-major diagnosis. That self-knowledge can help guide you in knowing how much to protect yourself, and how slow to go, if you're ready to reach out and date - maybe with people you don't know at all. And if time is passing farther and farther post-diagnosis, and your emotional stocks never seem to replenish, it may be time to take steps to get help. Before opening yourself up to strangers, in any setting.

2) Show; don't tell - Proving that it's truly an ill wind that blows no good, there are times when the burden of confession is lifted from your shoulders. If you're rockin' a glorious Melissa Etheridge 'do, then you know that fretting over disclosure is something you won't have to worry about. But it may raise other questions for you: was your diagnosis part of the attraction? Are their other, less visible issues you'll struggle to reveal? If you're still on your treatment-journey, how much more resilience will you need if there's a break-up too? In a certain way, no matter whether your post-diagnosis self has visible changes or not, you certainly know that your psychological landscape has probably changed. Some of those changes may not even be apparent to you until you discover or explore them with a partner. Which leads us to...

3) The dance of the seven veils - No matter your gender, your diagnosis, or your state of healing, there's something to be said for ALWAYS viewing sex with a new partner as a dance of the seven veils. By that, I mean a deliberate step-by-step unveiling (sometimes physical, sometimes emotional). It can be hard to re-orient yourself to think that way, much less impose it on your actions, if you're a sexually mature adult. Kind of like acknowledging your newly-tender, possibly retro-sexually-adolescent self. But think of the joy and tenderness that was the best of adolescent exploration - that's what you want. When it comes (har) to sex, an unveiling is both powerfully seductive, and powerfully protective. If you deliberately move gradually into intimacy, you can, at each stage, take a breath and check whether this still feels right to you. Maybe your dance of the seven veils happens over seven months. Or, in contrast, seven minutes (hey, done safely, post-diagnosis, there's something to be said for pulse-pounding, unzipping, up-against-the-wall sex). Either seven veils in seven months, or seven minutes, can work, sexually, for some. But when it comes to the dance of the seven veils of emotional intimacy, however, that usually takes a bit longer to be performed safely - because you're dancing with each other. Emotions don't shift and settle as quickly as a pulse. The fact is - and there's probably a neurologic basis for this - it's hard to truly gauge another person's emotional reaction with any speed. Some things take a while to sink in - both for you and your partner. Knowing where you stand, and how you both feel, is worth the gift of time.

And so what happens if you feel the pull of love, but your partner doesn't seem willing to give you the time to move from veil to veil? That question reminds me of a great kid I know, a boy who wore his sister's neon pink ankle socks with long pants to the first day of second grade. His mom, a very lovely and reasonable person, didn't notice the socks until pick-up time after school. On the way home, she neutrally said, "Mike, hmm, those are interesting socks you wore." "Yep," he said, while munching on his after-school snack, "I thought it'd be a good way to find out who's mean." Someone who won't give you time doesn't deserve your intimacy. I know that sounds easy to say when your heart is not raw and aching, but it's important to remind yourself of your worth and the value of your gift of self. But what if your time frame seems to stretch "too long" - and even caring friends are telling you so? Some people would say there is not such thing as taking too long to jump back into dating and sex, that you should always follow your own time-table. But it's also important to consider whether you might be delaying intimacy for other reasons - maybe it's time to get out that bar-coder again and take inventory on your emotional state. Get help if you think a reality check is in order, but don't doubt your instincts because of partner-pressure.

4) Tell; don't show - What about the approach where you wave your diagnosis flag right from the beginning? There's some value to early ultimate disclosure. For some diagnoses, in some states, it's actually the pre-sex law (such as with herpes and HIV diagnoses). And, for some people, it's a "pink socks" way of sorting through the intimacy-applicants. But here's the downside: the goal of emotional health is that you are not defined by your diagnosis. Nor by the effects of your treatment. In every bed there is, optimally, only two people. Inviting your diagnosis/treatment into a sexual relationship before it even begins usually means that every action or reaction can be (rightly or wrongly) viewed through that lens. Crow-barring your diagnosis out of the bed at a later date may be harder than you might anticipate. So what's a middle-ground approach? Ah, one everybody likes to indulge - foreplay. Lots of it. Certainly find out if you can even tolerate the way your partner kisses before you hand over your heart/breast/prostate/HIV infection on a platter.

5) You show me yours and I'll show you mine - Many people report that mutual vulnerability is the way to go. By this, I mean that intimacy (physical and emotional) occurs in tandem. It's the strip-poker approach to post-diagnosis dating. For example, a person might say that they didn't feel comfortable revealing their struggles until they found out their partner had been through something traumatic in his/her past. Is there value to this approach? In terms of relationship power-dynamics (especially if you begin a relationship while you're still feeling fragile), the answer is definitely. But there are potential pitfalls. Once again, the goal is to be emotionally healthy (within and outside the relationship), and not to define yourself or your partner by your vulnerabilities. Except, perhaps, by the amazing strength and character that overcoming them has given you, thereby enabling you to live life to the fullest. There are few things more inspiring than meeting a patient who honestly forgets to mention a life-threatening disease or, when asked, refers to a cross-body scar, with a gurgling barroom laugh, as "what? that old thing?" It's a state that we all wish for ourselves and our loved ones - the battle scars that add character, instead of symbolizing an absence. There is much value to sharing your wounds with someone who's also wounded, but there are risks as well . Especially when it comes to your journey and efforts to reach a new level of peace and self-assurance, post-diagnosis.

6) What about when the rubber hits the...well, you get the idea - So happens when the glorious, gritty moment of full-contact slippery-sport arrives? It's important to keep in mind that, no matter what the diagnosis, or the self-perceived disfigurement, there are few sexual experiences that cannot be improved by three crucial L's: lube, love and laughter. If the relationship is right, and the intimacy dance is mutual, it'll be okay. Really. There are moments in everyone's life when something basic to human existence feels impossible to obtain. It's in those moments that it's good to remind yourself of one of the benefits of our massively-populated, over-connected age: thousands upon thousands of people with circumstances similar to yours are doing it. Right now. That's encouraging. Others have made it through this path. There are people to turn to , when you need help and reassurance. The bottom line is that if others can make it, so, (with appropriate protective steps to safeguard this gift of your true self that you want to give another), can you. Good sex is a powerful, nurturing force in life. Take steps to let it into yours.

Dr. Jan Gurley, a board-certified internist physician, is the only Harvard Medical School graduate to have been awarded a Shoney’s Ten-Step Pin for documented excellence in waitressing. 

She will be leaving for Haiti in a matter of days, and you can read about her journey at http://www.docgurley.com/ 

You can also follow her on twitter @DocGurley

Illustration from costcutting.com

Comments are open to all

Welcome to all the new readers...two things I wanted to point out, we would love for you to follow us, but for now anyone is free to comment. You do not need to be registered.
Also we have an email feature you can use by clicking on the envelope!

Angels in Mini-Vans

Editor's note: One of the most talented writers I've met in the breast cancer community is Debbie Clement. She is also a professional performer, a published author of books for teachers and children, and a photographer. Most of all, she has  a unique way of transforming the painful, difficult parts of this breast cancer journey into beautiful words. We hope to see and hear a lot more from her in the months ahead! Suzanne It's now 5 weeks since my second diagnosis of DCIS. I had two years and nine months to consider the possibility of hearing that announcement again, "It's cancer." It's been just over three weeks since my surgery and I am making progress toward reclaiming my life. One step at a time. Literally. My BC mentor and friend, Saint, put me on a very specific walking program. We call it: one step at a time. (My new mantra.) Walking upon waking and then a nice rest with computer visiting and then a second walk sometime after lunch. I am working very hard to pace myself, to guard against my splurge toward 'over-doing' it.

So earlier this week I checked the skies & the thermometer and dressed appropriately: walking pants, long sleeve t-shirt and then due to the 49 degrees I zipped up my hot-pink, winter parka, all the way up to my hood. For Pete's sake I'm from the mid-west... 49 degrees on a February morning with a blue sky, is an open inviation to get moving!

Off I went. I have a route. I follow it conscientously, again, to guard against my own enthusiasm & my desire which over-extends my actual current capabilities. I was just about to my half way mark, when I heard a car approaching me from behind. Slowing down. Someone needing directions to the clubhouse perhaps?? (It's really hard to imagine that anyone is lost.) The mini-van came to a complete stop and the driver put her window down and I walked over. Then came the most amazing part of the interaction, the part worth logging down for posterity. The driver said these four words to me, "You are sooooo courageous."

I am stunned. I am flabber-gasted. I have no words. I am on the verge of tears.... maybe even a total melt-down? How does she know? How does this total stranger know my story? The tears are all set to cascade when in my complete silence she continues, "This is such a cold morning for a Florida walk."

My tears turn to laughter on a dime, instantaneously. My heart does a couple of cart-wheels. She doesn't know my tale of woe!! She has not used her super powers of x-ray vision to beam thru my three layers of protective gear to assess my scars. She did not read the bumper sticker on my back that says 'bilateral-basket case, no recon, approach with care'. She has not ascertained anything from my body language or the pace of my walk. She apparently didn't even see the neon lights blinking over my head flashing: "2-time cancer survivor, emotional land mine, pass with caution." She was commenting on the unseasonable weather. Seriously!! In her mind, walking on a brisk morning made me courageous. Just imagine.......

I stammer something about recently completed surgery and my needing fresh air. She asks for my first name & promises to say a prayer for me. My return trip home is a blink, because I keep repeating her statement to myself, "You are sooo courageous. You are SOOO courageous. YOU are sooooo courageous." [I think it's one of those times when "fake it-till ya make it," is applicable.] I can squeeze my ears, right now as I type, and hear her saying to me, "You are soooo courageous." I'm inching closer and closer to my new normal. Tomorrow's assignment will be to walk and smile at the same time.

Never under-estimate the power of four kind words spoken by a stranger.

A mini-van with an angel. Thank you and thank you again.


You can read more of Debbie's work at her blog www.Rainbowswithinreach.blogspot.com

No Sweat

Editors's note: It takes a little while before we can look for a silver lining in our cancer clouds. For some, breast cancer is a instant call to action, others may not change much. Beth L. Gainer however has a lot of clarity!  Suzanne

Before I was diagnosed with breast cancer, I was in a bad place. My marriage was chaotic, and my boss saddled me with unreasonable amounts of overtime.

For years, this was my life.

But I was the one who allowed people to walk all over me and take advantage of me. I knew life changes were in order, but I was too afraid to make them.

That’s when I got the wake-up call of wake-up calls: breast cancer.

I fought the fight of my life and, for once in my life, focused on what was best for me. I refused to work overtime during chemotherapy and radiation treatments, which I had simultaneously. I was terribly ill, and all I could do was focus on getting through each treatment and its side effects.

Within a year after my last chemotherapy treatment, I divorced my husband and found a better career.

To this day, I don’t sweat the small stuff. Don’t get me wrong – like everyone else, I get annoyed or irritated by things. But when I start thinking about things to whine about, that’s when I really start thinking: about how lucky I am to be able to eat without getting sick; how I enjoy the taste of food again; how I can go to the bathroom on my own; how lucky I am to have my daughter; how grateful I am for all the special people in my life – and the list goes on. 
Life’s daily trials and tribulations no longer faze me, not after having faced the beast known as cancer. Life’s too precious to waste one minute mired in petty problems.

I got breast cancer, and now I totally get it.




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

You can read her previous article for Loop at http://joinourloop.blogspot.com/2010/01/fighting-for-motherhood.html  
Image from idomsbykids.com

War reporter battles breast cancer

Network news correspondent Jennifer Griffin was on the Today show this morning to talk about her treatment for triple negative breast cancer. If you follow the link, NBC has a pretty impressive breast cancer resource page. They have a rather unique first person gallery of experience, and I believe they are still accepting submissions.

The Loop List: Power of Pictures

We were very gratified by the response to Laura's striking and powerful art work, so this week's Loop list is dedicated to artists and photographers.


http://www.lillyoncologyoncanvas.com/Pages/Index.aspx
While "Oncology on Canvas" may not be the most poetic title, this site is fascinating! It has a lot of interesting art work connected to all cancers including breast. If you are an artist they have a variety of competitions and exhibition opportunities. The site also has a unique design.


http://www.projectstoryboard.com/2010/01/to-have-to-hold-breast-cancer-photo-shoot-2009/
Peter Doyle is one of the most talented people I have met on twitter, a wedding photographer who is also very active in charity projects.
He is in Haiti this week, but also did a stunning shoot of brides as a breast cancer awareness project. There is a lot to look at on his site, but my favorite thing was this video.
http://www.youtube.com/watch?v=xCYHe8Vb87o&feature=player_embedded#


http://posingforpink.giving.officelive.com/default.aspx
I got a kick out of this site.....it is a photo project from Minnesota done as a breast cancer fundraiser. The participants kinda, sorta "take it all off" but it's done in a tasteful and lighthearted way.


http://www.cafepress.com/BCABPP
Michael D. Colanero's Breast Cancer Awareness Body Painting Project was on of our first stories on Loop, and we have heard from several of the subjects who said it was an empowering and transformative experience. The link above takes you to the final images and merchandise...below is a link to the "behind the scenes" youtube video channel.
http://www.youtube.com/BCABPP


http://www.cbsatlanta.com/video/22470546/index.html
This last link takes you to a very unique story from the CBS affiliate in Atlanta about a painting class where women use their breasts to create art. I admit, when I heard that the first time I wasn't sure what to make of it, but the writing and photojournalism is top notch.

So there you are......one of the fun things about working on Loop is seeing the variety of projects raising out there. I hope you enjoy the list as much as I did!
Suzanne
photo from tiachucha.com

Painting and Coping

Editor's note: Deb and I were stunned by the power and honesty of Laura Tasheiko's work. While she normally paints scenes of nature in Maine, her visual journal of breast cancer is remarkable. Make sure to click the link! Suz

It was all new to me. I had absolutely no knowledge or understanding of Breast Cancer prior to my own diagnosis.   Just as important as acquiring knowledge about the disease was journaling about my experience as I lived day to day through each stage of treatment and recovery. Once in treatment, however, I found writing about my experience with Breast Cancer very difficult to do. As I progressed through surgery and chemotherapy treatments words became totally inadequate to describe what I was going through and all the ways my physical being and my life were affected.

The problem for me was the medical terms; take for example, Bilateral Mastectomy. This describes a clinical procedure that is understood on an intellectual level only. It does not even begin to convey the brutal reality of actually experiencing it. And how could I relate with words, in a convincing way, what it really feels like to loose your hair, what bone pain is like, or how lymphedema, blood clots, neuropathy, or other devastating side-effects of breast cancer surgery and chemotherapy treatment can be almost as impossible to contend with as the idea of having the disease itself? Yet I felt compelled to externalize my thoughts and feelings, if only to process and sort them out for myself.

Journaling helps me to clarify my thoughts, acknowledge and integrate my feelings, and maintain my confidence so I can continue participating in my own recovery. In this situation when I could not find the words, I created raw, graphic images in expressive style and color, making mine a Visual Journal. For me this artistic expression more accurately relates my breast cancer journey on the several levels I lived it – mentally, emotionally, spiritually, as well as physically. Also included in my journal are photographs of places, events and some of the people accompanying me along the way. I am finding as I get further away from treatment and more into recovery, I am once again finding words to use, and so the journal does include some text, as well as photographs, and original paintings. The overall impression is a collage portraying my new reality of life after breast cancer.

Laura Tasheiko, Northport, Maine 2010

Laura Tasheiko is a professionally trained artist with degrees in Studio Art and Art Education. She has taught K-12, as well as adult level students. 

She continues painting and selling her work to both private and corporate collections. You can see more of her work at www.Mainenaturepatings.com 

Sisterhood

Wow, it has been an exceptional week for us, 4 very kind mentions from our sister bloggers. Thank you so much!!!

Beyond Breast Cancer continued musing on our post about the Saints (not the football team.)

Sharing Strength did an interesting q&a round up of breast cancer bloggers, and what got us heading this way on the information superhighway. 

Kathleen Ryan gave us a glorious mention on Women of Mystery 

Not to be confused with......

Kicking it with Kat, who included us in her very cool blog roll that updates with posts!

Former Secretary of State Condoleezza Rice slated to play piano at breast cancer fundraiser

The organizer's website
http://www.faithfancher.org/

Media coverage of the political controversy.
http://www.mercurynews.com/columns/ci_14342319

Image from Zazzle.com

A question for all you breast cancer bloggers

If you never had breast cancer would you still be blogging?
What do you think you would be writing about?
Was bc what got you started writing, or was it always a part of you?
Please reply below!

More great breast cancer awareness ads

 Just found another page of these....in the spirit of Superbowl Sunday...enjoy!

Sunday thoughts on St. Agatha

Did you know there is a patron saint of breast cancer?  St. Agatha apparently. And while I found out about this 48 hours too late, there was actually a special service for bc patients, on her saint's day, not too far from where I live in NYC.
I will admit I am not an expert on the topic, so please feel free to share more about this.
My hand is hurting from too much computer use, so I am going to try to keep it light on Sunday.
Otherwise I am going to be looking for the patron saint of carpal tunnel.
Suz



Update: our commenter Lopsided Blogger wrote in to tell us about St. Aldegundis. Please read her note, or click on the image to learn more.

Determination

Editor's note: I am thrilled to share this next essay with you. Breast cancer doesn't seem to care what it interrupts. Kathleen Ryan was in the midst of a law enforcement career in Suffolk County, Long Island. This is her story. Suzanne


When I read that Suzanne completed her radiation treatments, I thought about my last treatment, in December 2004. My time slot was early in the morning, usually around 7:30 a.m., so that I could go to work directly after. I
worked alternating shifts as a police officer, so it worked out well during
the weeks I worked 8 a.m. to 4 p.m., but it was tougher to arrive so early
during the weeks I worked 4 p.m. to midnight.

To accommodate my schedule, my radiation treatments were fit in with the prostate cancer patients. When I was called for my turn, I proudly announced, "This is my last treatment!" A gentlemen replied, "Someone once said that you give up a year of your life in exchange for the rest of your life," and I realized he was right; it had been more than a year since my breast cancer journey began. I had focused on what I needed to do in order to survive; everything else had to come second for the time being.

When I experienced surgeries, lymphedema, chemotherapy, hair loss, fatigue, hot flashes, taste perversion, weight loss, breast reconstruction, and radiation, I decided to have tunnel vision. This was the path I had to take to save my life, to see my kids grow up. I couldn't get sidetracked by all the side effects. How could I complain when this was what modern science and medicine had to offer to extend my life? I looked straight ahead, with blinders on.

Once a year, an officer has to qualify at the shooting range. If for some reason you don't qualify within the year, they take your guns away until you're able to qualify. It happens, for example, if an officer is injured in the line of duty and is out for an extended time; if an officer is pregnant, takes a leave and more than a year passes, or, as in cases such as mine, an extended illness.

I usually qualified in the spring, but I had my mastectomy in February 2004, and it took weeks to heal before I could start chemo, which I finally did ~ on April Fool's Day. I did not have the strength to go to the range, so I put it off. Three weeks after finishing chemo, I had the tissue expander exchange/implant surgery, and a few weeks after that, radiation began.

I had to postpone a day of radiation because my nine-year-old daughter's heart needed to be repaired. She was diagnosed with an atrial septal defect when she was two; it was monitored every year, and that year the cardiologist told us that half of her heart was enlarged and she needed this non-surgical procedure (which turned out extremely successful). Radiation was delayed a couple more times because my skin was literally melting off.

I finished radiation near the end of December. Four days later, I was at the range, qualifying with my 9 mm weapon and a shotgun, too. I didn't want my guns taken away. I'll never forget the sight I must have been to the guys at the range; I wore a bandanna to hide the tiny stubble that had recently started to grow back; I had no eyelashes, no eyebrows ~ but I was determined to qualify.

I stuck to my guns and was able to keep them.

Kathleen A. Ryan is a retired 21-year veteran of the Suffolk County Police Department who is working on a true crime memoir and blogs at www.womenofmystery.net. Her essay, “The Watcher” will appear in the 2010 Winter/Spring edition of The Southampton Review; it won a Creative Nonfiction award from the Public Safety Writers Association in 2009. Kathleen is a breast cancer survivor who lives on Long Island with her husband and two children. She volunteers with the American Cancer Society and Crime Stoppers of Suffolk County, Inc.