Jody Schoger, #BCSM, and loss

I started this blog when I was diagnosed in 2009.

I had grand visions.

I wanted to use my journalism skills to create something new and vibrant for people with breast cancer.

It's ok that is never happened.

I went back to work a year later, and social media became a bigger and bigger part of my job. I lost the desire to be online in my off time.

Back in the day Jody Schoger also wanted to create something.

She did it.

A simple hashtag, #BCSM marked a path for how patients would use social media connect.

More than that it allowed us to interact with medical professionals like Dr. Deanna Attai and others. For the first time doctors were "us" not "them".

People with other diseases followed suit with similar hashtags.

Over the past few years our contact was quite infrequent, but I was glad to see her fufulling her vision.

I have never trusted the whole "you are in the clear after 5 years thing." The slower breast cancers can stalk you for years. I believe Jody was 15 years out at the time of her progression.

I have not posted on this blog in several years, but I had to do more than just write a tweet for @JodyMS.

Here is a beautiful post by @stales.

http://bcsm.org/good-night-jody/

"Bridget Jones with Breast Cancer"

Two years ago I wrote my original review of "The C Word" Lisa Lynch's memoir of early-stage breast cancer. It was a treat of a book with a cupcake on the front. I really enjoyed Lisa's irreverent, Chick-Brit-Lit style of writing.

I continued to follow her cheeky blog. Lisa's cancer became "secondary" moving to bones and brains, and coping with it became the center of her life.

Last year her blog and twitter feed went silent. Last week we got the news Lisa had passed.

Lisa was a pro, she would have been a literary success without cancer, and it was a treat reading her.

http://www.joinourloop.blogspot.com/2011/04/alright-tit-c-word-review.html

There is still a BBC tv movie adaptation on the way, I am so sorry she didn't live to see it.

Someone's been blogging in my house

In the year following by breast cancer diagnosis this site was a big priority for me. I was an out of work journalist, I really believed that there was a place for a digital hub for breast cancer news, writing, and social connections.

There probably still is.

But as my health improved there were chances to go back to my career as a local news anchor and reporter. I also started my own business that has nothing to do with cancer.

Someday the tools to create the perfect website for breast cancer will be affordable. When Deb and I took meetings the cost was daunting to do what we wanted.

At somepoint I switched joinourloop.blogspot.com to a snappier domain, breastcancerloop.org.

Today I realized that March 8th someone else bought up that domain. They started their own site, which has plenty of videos. Whatever.

Honestly stealing a web domain from a cancer patient is kind of cruddy karma.

To be honest I am annoyed but not crushed. I kind of saw my will to consistently write about BC slip away.

In November, I attended the Breast Cancer Research Foundations excellent symposium, and the next day I got so busy with work I never had time to write a post. I still have the press releases in my bag.

So I'll still check in here from time to time, I will still tweet and retweet on Twitter where I seem to have a larger audience.

Magic Hour

 A remarkable video about a woman with stage 4 cancer and her dream trip to Paris.
 http://vimeo.com/57648966

Take 10 :Tamoxifen for a decade?

For younger women with ER+ breast cancer, five years has been a magic mark. After five years you are done with Tamoxifen, you can go have that baby, or just not take a pill. Now a new study shows a substantial benefit to 10 years.

Good news/bad news? Both?

More from the AP via the Washington Post

The Beauty of Research: The Pink Jalk Project

Way back in the early 90's I worked at the Clinique counter at Macy's Herald Square. We were considered something of a "showcase" counter and we would get visits from company executives from time to time.

One day a woman walked up to me and said,"Hi I'm Evelyn Lauder, tell me about what you are doing."

Lauder, of course, was at the top of the corporate ladder, Clinique being a subsidiary of Estee Lauder. I can't remember the specifics of our conversation, but the way she interacted with me left a lasting impression.

People who are truly great treat everyone's contribution with respect.

It sounds like a cliche, but it was a lesson that I carried with me through my time at Clinique and into my career in television.

Little did I know, that our lives would intersect decades later.

I would become a breast cancer patient at a facility that was named for Lauder, who also was the key patron of the Breast Cancer Research Foundation.

I was at a talk at the 92nd Street Y a few weeks ago when Dr. Larry Norton talked about Lauder's relationship with the BCRF.

He said she appreciated the beauty of cancer research, meaning she could see a value beyond the medical. She could appreciate its creativity and elegance.

That creativity and elegance can also be seen at a unique fundraiser for the BCRF.

For the past three years SUITE New York has held a design challenge to raise funds for BCRF. Each year designers are asked to re-imagine a classic modernist chair.

This year's event is called the Pink Jalk Project.

The Jalk is featured in MOMA and was designed by a woman. Maria Sepulveda and Kris Fuchs' showroom features a wide variety of Jalks ranging from the blinged-out to fancifuly simple.

All are being auctioned online right now at charitybuzz.com.

So what does all this mean to a patient like me?

It would be easy to sum up the project as a colorful effort to raise money for a good cause, but after seeing the chairs and meeting many of the designers at a reception last week, the project impressed me as something more profound.

Just like cancer researchers, designers use their imagination to create something new. Sometimes it works, sometimes it is an interesting failure. But it's gratifying to see these talented innovators using their skills to help save the lives of women like me.

One of the most show stopping efforts is by David Rockwell. His chair keeps the simplicity of the original's exterior, but has an underneath lined with a riot of pink crystals. Something about the pairing reminded me of the spirit of the women fighting this disease.

Darrell Carter transformed the Jalk from furniture to sculpture. His work actually made me think of the many survivors and bloggers who want to remind the world that there is nothing easy, pink, or twinkly about cancer.

Stephanie Gotto told me she finished her chair in silver to reflect back at the world, and lined in pink leather to reflect the curves of a woman's body.

These chairs and many more can be bought through the online auction which runs through the end of October.

80% percent of the proceeds of each chair go to the BCRF. There is something for every taste, and you will have a conversation piece that helped save lives.

I also want to thank Kris Fuchs for inviting me to the reception last week. She extended her hospitality to a random chick with breast cancer who contacted her on Facebook.

It was the sort of gracious gesture that reminded me of my encounter with Evelyn.

Pink you can believe in

Call it Pinktober, call it Breast Cancer Action Month, or call it "Wake me when it's over," it is October 1st and I would be one crummy BC blogger if I didn't post something.

The funny thing is I find myself more filled with contentment than dread. Sure I have seen some icky stuff benefitting bogus charities, but then I saw this.

Bestill my heart, fresh lettuce benefitting my charity of choice, The Breast Cancer Research Foundation!!!

OK, someone out there might complain it's not organic, but we have come a long way from the pink pimp cup I saw at the store, or pink guns, or what ever the worst possible product you can think of is!

I am also in a really good mood, because the community where I worked as a news anchor until well, today, had a really successful Making Strides Against Breast Cancer walk. The area was hit hard by a flood three weeks before last year's event, raising money here is tough, so I guess this October 1st, I am seeing the world through rose-colored glasses!

Pickler's Buzz Cut

So former American Idol contestant and sassy broad Kelli Pickler shaved her head to support a friend with breast cancer.

The gesture is lovely, but I always wonder, if women really want these gestures.

I think if it were me, I might not want to be reminded of cancer every time I look at my friend.

But to each her own.

Both ladies do still look really pretty.

Your thoughts?

http://www.nydailynews.com/entertainment/gossip/kellie-pickler-shaves-head-support-cancer-stricken-best-friend-summer-holt-miller-article-1.1152412

Photo from NY Daily News

Cancerversary #3

O.K. I am actually a day late on this which is perhaps some sort of progress, I actually mixed up what day my cancerversary falls on.

Just for laughs here is my post from the first year.

http://www.breastcancerloop.org/2010/09/happy-cancerversary-to-me.html

This time of year is such a time of transition, back to school, summer to fall, political conventions, hurricanes, the US Open, even the Zydeco festival in Opeselousas, Louisana.

So here is what I remember.

Somehow in my first two weeks as a cancer patient I made it to Louisiana, California, and the US Open in Queens.

I came back from the national SPJ Convention in Indy on Sunday, took a day to recover on Monday, and went for my follow-up mammogram on Tuesday, which turned out to also be an ultrasound and the "area of concer" bomb.

Biopsy Wednesday. Ouch!


Thursday I decided it was now or never on Louisana, booked a ticket, Flew to Louisiana  Friday, Danced my rear off and ate everything in sight Saturday, got home Sunday, no memories of Monday, cancer call first thing Tuesday.

Some poor radiologist, comes back from Labor Day weekend and gets the job of calling women to tell them they have cancer. That's gotta suck. How many times a day does he have to make that call?

Sorry, cancer cells in biopsy, you'll need a PET scan and MRI ASAP. Talk about upselling!

Somehow I made it out to the US Open that next week and I set off the nuclear radiation detectors following my PET scan.

I was running on adrenaline.

I went to a wedding in California that weekend, and due to rain delays even made it to the final to see Juan Martin del Potro win the men's championship over Roger Federer the next day.

It was a crazy, improbable victory, and at the time that is what I needed to see at the time. I remember a group of Argentines dancing for joy.

I realize this is sounding more like a moldy version of Tennis Magazine than a breast cancer blog, but here is the thing, I never go to the finals, too rich for my blood, but that year I went because I thought I might never have another chance.

Fortunately I did.

New York now has a breast density law

The radiologist didn't recognize my face, but I knew what would trigger her memory.

"Remember me, really dense breast tissue lady?"

She lit up with recognition.

Apparently I had some of the densest breast tissue this side of the Mississippi. Getting a wire in me was an exceptional ordeal.

I believe my surgeon said dealing with my breasts was like "sawing into concrete."

New York State now has a new law requiring mammogram patients to be told if they have dense tissue. The density can make mammograms less conclusive and indicate higher risk.

I know women who fought for this bill, one who believes she might not have metastatic disease had she  been warned.

It's a done deal.

http://www.silive.com/news/index.ssf/2012/07/gov_cuomo_signs_legislation_to.html

Give Komen (or me) credit

Way back in April of '10 I wrote a post about the Komen/KFC kerfuffle.

http://www.breastcancerloop.org/2010/04/which-came-first-chicken-or-cure.html

I suggested the charity start looking for some partners who would get them positive PR, and create some good will with health-conscious survivors.

Specifically I mentioned getting busy on some cute pink ribbon wrappers for fresh produce.

Then today I saw this!

Good job. Were they reading this blog? I doubt it, but it's the right idea. Promotions that encourage healthy habits.

Transitions

I feel kind of ashamed I have not posted in more than a month.

I spent a remarkable evening with some of my favorite support group alums that I will talk about later.

One thing that came up is the shift in care as we begin to rack up the years post-diagnosis.

My radiation oncologist says she does not need to really see me any more.

A friend has been told she will be transitioned into the "survivor" program at her cancer center.

It's odd, just as we get used to the system, good at dealing with it, it's time for the next step.

For the past two years nearly all my vacation days have been for or surrounding medical appointments.

It was just the way it had to be, parts of our lives get pushed aside by cancer, now we have to find our way back.

This disease, if you are lucky, starts as a physical game, but shifts to a mental one.

When I am out in the civilian world sometimes I feel a little out of place, this experience has shaped how I see my life, there is so much we go through that is hard to explain.

Cancer took a huge bite out of my identity, now it's time to start getting it back.

What were your transitions like? Did you get back to being your "old self" or become someone new?

Post and discuss!

Breast Cancer Survivors Tweet About Sex Issues Tuesday 4/25

  Breast Cancer Answers ( http://www.breastcanceranswers.com ), the first ever social media show, is hosting a LIVE Twitter discussion, or "TweetUp," on April 25, 2012 at 6 p.m PDT/9 p.m. EDT. Attendees will have a chance to ask questions to a sexual health medical expert and network with other breast cancer patients, survivors, and advocates.

Wednesday's TweetUp discussion will feature Dr. Michael Krychman, who will lead the discussion on, "Breaking the Conspiracy of Sexual Silence After Breast Cancer: How can I effectively discuss my sexual concerns with my partner & health care provider?"

"Many of my patients are so relieved to know that their breast cancer sexual side effects are common and often easily resolved," said Michael Krychman, MD, clinical sexual counselor and board certified obstetrician and gynecologist . "It's very rewarding to team up with BreastCancerAnswers.com to help women regain wellness and enjoyment of life's many pleasures."

Attendees of the TweetUp are encouraged to ask questions for themselves and other women all over the world who may be silently suffering from the sexual side effects of breast cancer. Dr. Krychman and Breast Cancer Answers have created a downloadable PDF that summarizes the topic and can be shared with patients in need.

"It's very common for breast cancer patients to feel like their sexual health concerns are being overlooked or swept under the rug," said Jay K. Harness, MD, FACS, the medical director for Breast Cancer Answers and a past president of The American Society of Breast Surgeons. "That's why it was vital for us to help women effectively communicate their sexual concerns with their health care provider and partner."

To access the TweetUp, search the hashtag #BCATU on Twitter or visit the official BreastCancerAnswers.com Twitter page at http://twitter.com/ #!/BreastCancerDr. Event attendees will have a chance to have their questions answered and win a $50.00 iTunes gift card.

ABOUT BREAST CANCER ANSWERS

Breast Cancer Answers, the first ever social media show, enables breast cancer patients across the dominant eight social networks to submit their questions and receive a video response back from medical experts. Each time a patient submits a new question, they receive an email with a video answering their question. These short Q & A responses, or episodes, are then published every week day across the Internet and into the show's growing Q & A video library. Patient questions can also be submitted at http://www.breastcanceranswers.com .

ABOUT DR. KRYCHMAN

Michael Krychman, MD, is the Executive Director at The Southern California Center for Sexual Health and Survivorship, Newport Beach CA. As a board certified obstetrician and gynecologist, clinical sexual counselor and author, Dr. Krychman has devoted his career to helping patients and their partners overcome sexual health challenges and experience a higher quality of physical intimacy. He is also a specialist in survivorship medicine and provides life coaching and care plans to optimize the health and wellness of patients with chronic diseases or cancer. Learn more about Dr. Krychman by visiting http://www.thesexualhealthcenter.com .

Lucky Hubby?

I don't post a whole lot about my relationship with my husband, but we had kind of a fight about something sort of breast cancer related.

We were watching a story about a car that hit some people on a street in New York City.

Someone in the story said the victims were lucky to be alive. It rubbed me the wrong way.

Having dealt with cancer, and pain, I understand how even a minor injury can totally impact a person's quality of life.

I would never say that someone who got hit by a car while walking down the street was lucky.

I wonder if they will have scars, back pain, medical bills.

When people say I am lucky my cancer wasn't worse, it really frustrates me.

Don't get me wrong, I am grateful for the positive aspects of my prognosis. I am happy I have good doctors. I am so glad to have insurance. Most of all I am amazingly fortunate to have my wonderful, supportive spouse.

A spouse who feels lucky I am still around. But I still struggle with the word.

I save lucky for the people walking around on the street who don't have cancer and didn't get hit by a car.

Anyhow, on a husband related note, this article really hits home.

http://health.usnews.com/health-news/news/articles/2012/04/23/wifes-breast-cancer-can-hurt-husbands-health-too-study

J.C. Hayward Keeps it Real

I always worry this blog will somehow end up skewed to news-anchors-with-breast-cancer.

But I am in awe of the mighty J.C. Haward.

I am no spring chicken in my profession, but I watched J.C. when I was a little girl growing up in Maryland. Her work is burned into my DNA.

I really skipped a breath when I heard she was diagnosed.

Now plenty of news-anchors-with-breast-cancer will do a story on their journey. But I have never seen a public figure be as open and revealing as JC is in these photos.

http://jchayward.com/2012/04/11/photos-jc-has-surgery/img_0044/

Yes, it is hard in a way to see a woman who symbolized news desk style in surgery, but I give her a great amount of credit.

Get well soon J.C.

Love,

Suzanne

Study Show Gaps in Breast Cancer Rehab

 So glad someone noticed!!!!

 http://www.upenn.edu/pennnews/news/breast-cancer-patients-suffer-treatment-related-side-effects-long-after-completing-care-penn-st

http://www.sciencecodex.com/report_outlines_innovative_breast_cancer_rehabilitation_model-89472

Of Dreams and Devils: Remembering Katherine Russell Rich

Katherine Russell Rich had at least two claims to fame. Her talent as a writer, and her 19 years of survival with metastatic breast cancer.

She wrote two books, “Dreaming in Hindi: Coming Awake in Another Language” and “The Red Devil: To Hell With Cancer — and Back.”

I didn't really know her, beyond a few email exchanges. But she was just exceptional.

Rich stretched the idea of what it meant to be diagnosed with advanced breast cancer.

Not just a medical fluke, she was able to articulate her experience. She frequently made the point that medical science should be studying the "outliers,"the women who live more than a decade with metastatic breast cancer.

She was our war correspondent, reporting from the frontline.

I have posted a few links, to her articles, and sadly to her obituary.


 http://www.nytimes.com/2010/04/27/health/27case.html

 http://www.nytimes.com/2012/04/07/health/katherine-russell-rich-who-wrote-of-cancer-fight-dies-at-56.html?partner=rss&emc=rss

http://www.oprah.com/health/Katherine-Russell-Rich-On-Surviving-Stage-IV-Breast-Cancer/print/1


http://www.huffingtonpost.com/katherine-russell-rich/

Giuliana Rancic Shares Body Image Struggles After Breast Cancer and Mastectomy

I have to admit until last night I never thought much about Giuliana Rancic's breast cancer journey.

Her initial reveals on TV seemed a touch unrealistic. I think many celebrities want to send a positive, "get that screening" message out so they don't share their actual hardships.

Kylie Minogue is a wonderful exception, griping about the side effects of Tamoxifen,

I don't begrudge anyone their path, but when I hear about people playing in Grand Slams or performing on Broadway through treatment, I feel like an under achiever.

Initially, Giuliana seemed so certain cancer would not effect her baby plans, and so quick to return to work I had a tough time relating to her.

Sometimes I feel like the world expects all of us to bounce back in a jiffy.

I feel awful writing this, but I was in a sense relieved when Carly Fiorina had to go public with her infection. People don't realize that infections are a common side effect, and at least I could kind of point to her and explain. I felt like my co-workers had a point of reference.

But back to our impossibly slender, fashionable survivor Giuliana.

Last night for some reason I ended up watching the E! True Hollywood Story about her, and kind of changed my take on her. Yes, she has one perky positive attitude but is seems more sincere and realistic. Like most of us she took time to grown into this new reality.

I give her a lot of credit for this clip.
http://www.youtube.com/watch?v=h5_Ls4ZiIiA&feature=player_embedded

Gosh I remember switching bra after bra trying to get comfortable, and all the fashion compromises. I actually accepted a journalism award a few weeks after radiation and heavens, in the photo I look AWFUL. I couldn't really wear a bra yet and in what was supposed to be my big moment was left awkwardly flopping around.

Bless Giuliana for showing the world that dealing with breast cancer can mean a million mundane yet frustrating struggles.

By the way Giuliana & Bill is on the Style Network. Silly me I kept looking for it on E!

Style network now has a breast cancer information page.

Anchor's on air mammogram leads to cancer diagnosis

My first co-anchor did this too. To encourage women to participate in exams she had her mammogram on TV. So did my twitter buddy @NeileJones, as she wrote about here in loop.

But I always feared one of the women would find out bad news. I mean it so easily could have been me.


http://www.theblaze.com/stories/utah-tv-anchors-on-air-mammogram-leads-to-cancer-diagnosis/

As it happened I am kind private about medical stuff (though I guess this blog contradicts that) but I was so glad I lost my job just a few weeks before my DX. This I needed to do in private.

I have no problem giving talks for BC groups, but this would be hard for me.

Best of luck to her!!

Hilarious! "Hot Guys" App Promotes Self-Exams

Good goin' Canada!

I know some of you will hate this, I know breast cancer is serious business, but I this is hilarious!

The wicked lades up north at ReThink Breast Cancer came up with an oh-so-memorable and genuinely funny way to promote regular self-exams.

http://abcnews.go.com/Health/CancerPreventionAndTreatment/man-reminder-app-hot-guys-raise-breast-cancer/story?id=15833070#.T1Gv6HO0w00