UPDATE FROM LONG ISLAND

The power is out all over Long Island.  Estimates are as high as 90% without power.  My cable went on by 1PM on Monday.  The electricity was gone by 2PM and the storm hadn't even started.  Not a good sign.

I was driving home just before it got bad.  Not a great idea. In fact, a really REALLY bad idea.  Saw what must have been exploding transformers lighting up the sky.  Sparks flying from electric poles.  Trees already down.  Had to make at least three detours because the roads were blocked or wires were down.

I was spared the wrath of the water.  It barely rained and I'm just far enough from the Long Island Sound that I did not experience what happened on this shore to those whose homes are a bit closer.  My friends on the ocean facing shore are devastated.  Even those miles from the ocean.  To say this was a bad storm is a massive understatement.

I have little or no cell service.  My phone is AT&T and my iPad is a Verizon model.  Both are overloaded.  I can't get online to retrieve mail.  Most texts come through hours later.  Forget twitter and Facebook.  And the blog.

Last night, I was able to get online but I suspect it was a lull in the cell service as I was up after many had already gone to sleep.

Thank you all for the texts, the notes on Facebook, the twitter love....  I expect to be in a hotel if this continues for much longer.  I expect this will continue for "much longer."  I will post pictures when I have full access.  I'm just hoping I can get my blog page up long enough to post this update.

This would be a good place to crack a joke or two but knowing the Brooklyn Battery Tunnel served as little more than a giant pipe, Ground Zero is a mess, a crane is hanging over 57th Street, NYU Hospital was evacuated-critically ill and newborn babies--when their backup generator was damaged, several people died, some in rather horrific fashion, I'll just say I'm grateful I'm safe.  My loved ones are safe.  My home is relatively untouched except for that electric/connectivity issue.

Again, thanks for the concern and the love.

PS-I found one spot on my property with LTE connection.  In my car.  I'm there now.  Will try to post some pictures.  First up, the huge pine that fell across my next door neighbor's home and on to one of their cars.  Yes.  The falling trees and downed wires were *that close** ....

DIDN'T WE JUST DO THIS HURRICANE STUFF?

I'm watching the storm coverage.  While I still have electricity.  There's a huge tree in my neighbor's yard.  The gusts are blowing through the thing. Storm not here quite yet.  Expected to begin about ten hours from now.  I already hear buzz saws in the distance.

Last year, I my power was out for 12 hours.  My neighbors?  Eight DAYS.  Going to post a few pics from Irene.  These photos are from my immediate area.  Next door, three homes down, the adjacent blocks.  In other words, I couldn't get out of my neighborhood despite the fact there ARE four different ways to the outside world.  Downed trees or dangling wires kept me right here.

Before I go into high drama Frankenstorm mode, I'd like to say thank you to WEGO Health.  Last week, I had the honor and distinct pleasure of speaking to a group of folks at Novartis (Yes, that would be BIG Pharma) .....  Gang... they are not the bad guys.  Every person in that room was attentive and engaged.  Novartis had already gained my respect.  Why?

Quite simply, they are behind the metastatic community.  There are You Tube videos and a GREAT website:  Count Us, Know Us, Join Us.  My commitment to the metastatic patients is no surprise to anyone who visits this blog with any regularity.

On Friday, I participated in a roundtable discussion with Alicia and Vicki.  This was another initiative of WEGO Health and I was delighted to join from my hotel room in Texas.  Taking some chance posting this as I've not heard it yet... nor do I recall much of what I said.....


My power is flickering on and off.... The latest LIPA outage map has a mess of spots around my home with already without power. As I understand it, trees are down. The wind gusts are quite strong.

Just for the sake of entertainment.... Here are the photos of Irene. Apparently, Irene was a walk in the park for most of us in the downstate area. Except, of course, those of us who were in the midst of a tornado. These photos are all within a one block radius of my home.  I'll be on twitter and Facebook if there are no updates here for a spell....

Encore presentation.... Irene, circa 2011.  An apparent cakewalk in comparison to Sandy's expected mess.

LOOK CLOSELY, THEY ARE LIVE WIRES

In the time it's taken me to type this, the winds have gotten steadier and stronger.  I'm posting this before I'm limited to my iPad and the possibility of an overloaded Verizon network.

NO NEED TO EXPLAIN

Yesterday, I was meandering around the Driskill Hotel in Austin.  I'm here for a conference.  As the spouse.  Complete with all sorts of planned activities.  Whole Foods for lunch and a cooking demonstration followed by high tea at the hotel.

The woman beside me joked, "I didn't need to leave home to go to a supermarket."  The woman on the other side of me?  Breast cancer.  In 2003.  Still dealing with neuropathy and a few other issues.  The joker asked the other woman how she was doing.  I know that code talk.  So I asked, "What was wrong?"  It wasn't really a nosy question despite the fact I just met both of these women less than an hour earlier.  Besides, I already knew the answer before I asked the question.

Having had enough of the planned activities, I decided it was time for a nap.  As I approached the elevator, there was a woman on her cell phone sitting on the bench adjacent to the elevators.  She wasn't being loud nor was she in an inappropriate location to be on the phone.  The elevators are in a sort of cubby area.  She had privacy.  Until, of course, I walked over to use the elevator.

In the 30 or 60 seconds it took for the elevator to arrive, this is what I heard:

"She always took such good care of her body."

Immediately, I knew.

The rest of it.....

"She always ate right and exercised."

"Is it in her family."

"How old did you say, she's 32 or 33?"

"No, you did the right thing by calling to let me know."

And, I did the right thing by stumbling upon this conversation.  A brutal reminder of how many, each day, are added to the club, now staring down the dark alley of disbelief, filled with questions and fear.  And a reminder that we must all come together with common goals.  Mets first.  Fearless Friends.  In it to end it.

On that note, happy weekend.....  apparently, I will be preparing for the Frankenstorm stuff.  This is reminiscent of last year.  I had no idea about Irene until it was a reality.  Irene spawned a tornado that bounced and skipped right around my house.

Sandy holds the possibility to last days and combine with some other weather to form the perfect storm.

Hell, I already live in the midst of a perfect storm......

My goal is to become a perfect storm... a disruptive storm..... the storm that forces change....

TODAY'S POST IS BROUGHT TO YOU BY ------ THE LETTER C AND THE NUMBER 2

Last November, I wrote what I felt was a very witty post.  I love my medical news feeds.  I find some of the most interesting headlines on my personalized google page.  Today, I learned that Sex Addiction is a legit mental health issue. I'm wondering if there were any patient advocates collaborating with the gang who updates the DSM.  That's me being a total show off... the DSM thing.... it's the manual on mental health-just in case that needed clarification and to show I am multi-faceted.  I'm not a one trick pink pony.  And, now that I'm thinking about pink ponies, does anyone know if Ralph Lauren did his pink pony thing this year?  Just curious and apropos of absolutely zip.

Anyway.... back to that sex addiction thing.  Was there collaboration and did the potential advocates fight for a seat at the table?  Tiger immediately jumps to my mind, followed by Michael Douglas.... but Bill Murray?  I'm not really feelin' that. The other two?  I could spot that about a mile away.  While I'm at it, I'm guessing sooner or later, the piercing green eyes of A-Rod will pop up on one of "those lists."  What else is new on the medical feeds?  This meningitis mess has a ticker rolling with updated numbers each time I open up a browser window.  And then, anything mentioning any sort of memory issues or PTSD or for the most part anything related to the brain always jumps off the page.

I have my own theory about the brain issues.  As the most mysterious part of the human anatomy, I can't help but feel that unlocking one thing is going to tie into many things.  So, I watch it all.  Last November, it was all about oxygen.  Wanna refresher?  Here's what I had to say just about a year ago:

This information was based upon a study done on veterans of the war in Iraq.  Since we are constantly using military metaphors to describe the disease that is cancer, I'm okay with making a leap to see if there is anything in this study that might help ME.

The study was done in part to address the treatment of post traumatic stress disorder in veterans.  It's well established in the mental health community that some (many? most? all?) cancer patients and survivors are also afflicted with PTSD.

Apparently, I found another piece to add to the puzzle of things I'm going to do.  I don't have a Bucket List.  I am assembling an "I'll Be A Lab Rat" list.

First, let's clarify something.  A "Lab Rat" bears absolutely no relation to a "Hood Rat" who, by definition according to Urban Dictionary is "a girl that dresses slutty and hangs out with and follows around a bunch of older guys."  And even if they are related by virtue of the fact that both are well, ummm, RATS, first of all, my clothes are too expensive to be slutty and I don't follow around any older guys.  I prefer being the followee and I prefer it if the guys are younger. Oh, and I'm too OLD to be a girl.  I have to call it like I see it.  Statute of limitations on utilization of the word "girl" has long since expired when it comes to me.

OK.  We are all in agreement?  I'm volunteering my services as a Lab Rat and in NO WAY shall that be construed in any manner to an admission I might be A Hood Rat.  Can I get that in writing?

Chemobrain being so difficult to unravel seems to have established roots in every, any and all parts of The Breast Cancer Experience.  Recapping some of what I learned:  it's the cancer itself, it's at least two of the drugs one of which may have actually crossed the blood brain barrier and done physiological damage, it's my age, it's the estrogen suppressant, it's anxiety, it's lack of sleep, it's the grassy knoll in Dallas, it's Occupy Wall Street.  Have I forgotten anything?  As some may well understand, much is very easily forgotten.  Oh, yes!  Particularly pertinent to this nugget of info, it's PTSD, too.

Without another sidebar, or going off on yet one more tangent or taking the long road to make a short point, this is the skinny on the study:

They completed a history and physical exam as well as a clinical interview by a neuropsychologist, psychometric testing, symptom and quality of life questionnaires, and baseline SPECT (Single-photon emission computed tomography) brain blood flow imaging prior to treatment. The veterans then underwent 40 treatments of low-dose hyperbaric oxygen therapy during 60-minute sessions over a 30-day period. They were retested within a week after treatment. 

Post-treatment testing revealed significant improvements in symptoms, abnormal physical exam findings, cognitive testing, quality of life measurements, and SPECT scans. Results showed improvement in 92% of vets experiencing short-term memory problems, in 87% of those complaining of headache, in 93% of those with cognitive deficits, in 75% with sleep disruption, and in 93% with depression. They also saw improvements in irritability, mood swings, impulsivity, balance, motor function, IQ, and blood flow in the brain, as well as a reduction in PTSD symptoms.

Well hallefriggenlullia............I can add one more thing to that ever growing bag of tricks-things I simply MUST try!!

I need a hyperbaric chamber! 

That was a year ago.  What prompts the recycling of this post?  Something that hit my medical news feed a few days ago. Apparently, scientists where quite surprised to find that carbon dioxide levels have significant effects on the human decision making process.  After looking at the mess on the floor that I displayed for the world to see in yesterday's post, I'm guessing the levels of carbon dioxide must be completely out of whack in my home.

Cheap jokes aside, and completely unable to elucidate the reasons why these studies are somehow tied to each other but grasping in the corners of my mind that they ARE, this information has an overarching reach.  You can read the article for yourselves but think about it.  Where are decisions made?  Behind closed doors.... oftentimes in smallish rooms with lots of people that seem to like to hear the sound of their own voices.  Is this screwing with their ability to make sound decisions?  Most certainly, there's lots of hot air in those rooms and that may be a bit scary.

Classrooms are another place where there are lots of people in a smallish space.  In the case of the classrooms, it may be more of a situation of ONE person talking and many others deep breathing as they are catching up on their sleep.  Green building initiatives have trickled into the conversation.  All I know?  The tests used provided some impressive results and those tests were targeting cognitive function.

The take away.  Oxygen is good.  Carbon dioxide is bad.  That's the whole story in its simplest form.  Or in other terminology, O2 is GREAT.  Once you add "The Big C" it's really really REALLY bad.  Hmmmmm....  We already knew that, didn't we?  Like I said, OverArching...... and now.....you'll have to excuse me.  I need to open a few windows and while I'm at it, I better check the batteries in my CO2 detector.  I have enough "C" or "C"'s in my life to last three lifetimes.

BIG THANKS..... AND CUE THE CONFETTI !!!

I want to congratulate Jody Schoger and Alicia Stales for creating a safe community on twitter when they began #BCSM. And then, extend an extra special thanks to Deanna Attai for joining as co-moderator.

Rather than repeat everything that is reprinted below, this is what appeared in USA Today compliments of journalist Liz Szabo who wrote this article.  Liz is a friend, a supporter and a participant in the Breast Cancer Social Media community. She always shares links to anything she finds.  She is a big part of the community and deserves to be congratulated, too. Her participation from the very beginning by using the hashtag (#BCSM for the non-tweeps) has sent ripples that I'm sure helped to grow the community.

The group is a powerhouse of support as Liz explains in her piece.  There is a video which is worth watching if you click to the USA Today website here.

Bottom line?  The chat may last for one hour each Monday but the hashtag is used frequently.  The "bat signal" is a tweet using #bcsm which generally guarantees a response from someone, usually quickly.  Does this really work?  Yep.  I know first hand.

One night not too long after this community was formed, I was having a really rough time trying to get to sleep.  I had a doctor appointment the following day and I was suffering from scanxiety. I THINK something was already "suspicious" (it turned out to be a big nothing but that, folks, is life after a cancer diagnosis).  Nothing is ever NOTHING. Until the doctor says it's nothing.  After which we generally spend the next month trying to believe it really IS nothing and close the chapter on that "episode."  We live in a minefield of nothings.  Most of us are acutely aware nothing could be a big something.  This "after" crap isn't the easiest course to navigate.

This particular night, I was a mess.  It was after 3AM.  There are people I COULD contact but I don't throw down the 3AM call unless it's essential.  A nervous breakdown doesn't fall under the essential to use a 3AM call category.  Into the twitterverse, I sent my nerves.  Within moments, someone replied.  "Try to rest.  You aren't alone.  Sending hugs." That tweet was sent to me from a total stranger, and if I remember correctly it was someone in South Africa.  What I do remember?  The tears stinging my eyes.  Sleep came soon after.  I wasn't alone.  There is global support.

I want to share a very public debt of gratitude to Jody, Alicia and Deanna for providing a "place" that has not only been a source of support but has brought together so many people.  Besides Deanna who is a breast surgeon, we have a number of doctors and psychologists who participate in those chats. Friendships have formed that I know will last a lifetime. Emotions run deeply despite the fact that many of us have never spoken to each other.

Thank you, Thank you.... THANK YOU....  BCSM has made the world smaller and I know it continues to ripple around the globe. Next Monday evening at 9PM, use tweetchat.  Simply type BCSM into the box and "lurk" .....  or, put your fingers on ice and jump in.....   

From Liz Szabo via USA Today:

BREAST CANCER SURVIVOR GROUP IS A SOCIAL MOVEMENT

7:40AM EDT October 23. 2012 - Twitter, perhaps best known lately as a source of Big Bird jokes, might not seem like the first place to look for a breast cancer support group, a boot camp in medical research or the seeds of a social movement.

Yet a weekly Twitter chat on breast cancer, launched just over year ago, has blossomed into all those things and more, participants say.

The online chat, known as BCSM -- or breast cancer social media -- has a growing following of men and women looking to share war stories, empower patients and change the national conversation on breast cancer.

Folks who join the chats "are amazing. And they tell each other so," says co-founder and breast cancer survivor Jody Schoger, 58, of The Woodlands, Texas. "They find the best in each other and celebrate that quality."

Robert Miller, a medical oncologist at the Johns Hopkins Kimmel Cancer Center In Baltimore, is a frequent guest expert on BCSM. Miller says he understands how those unfamiliar with Twitter might be "skeptical that exchanging 140-character messages with a group of strangers for an hour every Monday night would be an effective tool. But it really is."

Psychologist Ann Becker-Schutte, a frequent guest expert on BCSM, says the support group take its positive tone from its leaders.

Schoger and her fellow organizers -- who became friends online months before ever meeting face to face -- each bring unique talents, says Becker-Schutte, who specializes in helping people with serious diseases.

Schoger is a writer with a background in public relations. Co-founder Alicia Staley, 41, is a three-time cancer survivor from Boston, as well as an information technology analyst and online community manager. The third member of the team, California breast surgeon Deanna Attai, joined BCSM during its second chat and quickly became a co-moderator.

A well of support

Each moderator works hard to keep conversations on track and avoid the pitfalls of traditional support groups, Becker-Schutte says. While other support groups may allow people to vent their frustration, she says, BCSM provides a way for people to transform those frustrations into action.

In most support groups, "one or two patients sort of take over, and it turns into a bitch session," Attai says. "That's not what you see with #BCSM. ... We have a common goal -- that's to educate, empower and support, and all that participate seem to embrace that."

Schoger says she's been pleased to see how BCSM helps women -- and the occasional man -- think through complex issues and become leaders.

"So many of these women are writing stronger blog pieces and are taking up the mantle in different breast cancer organizations," Schoger says. "I just love watching it."

Staley says the group's success has surprised her. There's no formal promotion. Instead, early participants often stumbled across the chats after searching for keywords -- known on Twitter as hashtags -- such as cancer.

"This is something incredible that has grown out of a hashtag," Staley says.

The virtual community has spent more than 600 hours in conversation since their first chat. Schoger alone devotes about 15 hours a week to BCSM, and another 10 more to her blog, Women With Cancer.

The key to forming a close-knit community, Schoger says, is listening. She notes that many organizations and companies use social media such as Twitter as a one-way broadcasting system to put out a message of the day. The most successful people in social media foster real conversations, she says.

Becker-Schutte notes that the women's fellowship doesn't end with their hour-long chats. BCSM leaders monitor the group's ongoing conversations. "If someone is having a hard time, it isn't long before someone responds." Becker-Schutte says.

Conversations such as BCSM fill a huge void, Attai says. She began chatting with breast cancer patients after noticing a 1 a.m. conversation between two women about Paget's disease of the breast, a rare form of cancer that Attai has treated.

"Patients just aren't getting the information they need," Attai says. "Two women shouldn't have to go online in the middle of the night."

And although individual tweets are brief, the group delves into deep subjects. BCSM has tackled issues such as parenting and maintaining a career through breast cancer treatment; emotions such as anger, anxiety about recurrence and survivor's guilt; and post-treatment complications such as "chemo brain" and lymphedema, which causes arm swelling.

Staley, who developed breast cancer twice after receiving radiation for Hodgkin lymphoma, says many patients feel alone. She divides her cancer experience into three phases: diagnosis, treatment and "after."

"The diagnosis comes at you fast and furious," says Staley, who blogs at awesomecancersurvivor.com. "You make your decision for treatment. You get to the end of the treatment plan, and you get a pat on the back and off you go into the world. I've been through this three times, and the 'after' part is the hardest. You are pushed back into the real world and you have to redevelop your framework for connecting. That's what this community has done, to prop me up post-treatment, to get me back into the real world."

The Internet is teeming with online support groups, of course, including dozens just for breast cancer, Schoger says. Hundreds of cancer survivors across the USA now blog about their experiences.

Online communities can be especially powerful for those with rare diseases, who often may not be able to find other people with their condition in their communities, says Terry Lynn Arnold, of Friendswood, Texas.

Arnold, who has a rare type of breast cancer called inflammatory breast cancer, says she has formed close bonds on Facebook with women she would likely never have met in person.

Doing their homework

BCSM stands out from most other support groups, however, because of its rigorous focus on medical evidence, Attai says.

Given that myths and misinformation can spread like wildfire online, Attai says it's crucial for BCSM to provide accurate information that's supported by strong science. The group regularly dissects the latest research and routinely recruits experts. Some of the more science-heavy topics have included clinical trials, hereditary breast cancers and how to avoid "voodoo medicine."

In addition to Miller and Becker-Schutte, guest experts have included Matthew Katz, director of radiation oncology at Lowell General Hospital in Massachusetts; Julie Gralow, director of breast medical oncology at the Seattle Cancer Care Alliance; and St. Louis breast surgeon Diane Radford.

Although the group has plenty of compassion for people with cancer, members have little patience for hecklers, self-promoters or spammers, Staley says.

"There are plenty of angry communities on Twitter, but we're not one of them," Attai says. "If someone wants to pick a fight, they will quickly learn that's not what we are about. If someone wants to come and promote broccoli extract (as a cure for cancer), we will call them out on that, and they will go elsewhere."

Connecting across platforms

Attai and other doctors say the chats have given them a better sense of what patients are going through, and "how much my patients were holding back from me."

And while the community may be virtual, the emotions expressed are palpable, especially when participants are in crisis, or grieving the loss of a loved one, Schoger says.

Last February, BCSM lost two of its members in one day. Organizers scrapped their planned chat and devoted the entire hour to remembering the two women. "We had what can only be called a virtual wake," Schoger says.

And while BCSM isn't political, the community has developed a strong voice on key issues in breast cancer. The group regularly criticizes "pinkwashing," or the commercialization of breast cancer, which is invoked throughout October to sell products. Breast cancer bloggers are taking up the issue, as well, so much that "pink-ribbon fatigue" is becoming a common phrase.

Members of BCSM are also "fearless friends" to women with metastatic disease, which has spread to other organs and is incurable. Such women often feel unwelcome and abandoned by other breast cancer groups, Attai says.

"It seems like the community as a whole have turned their backs on men and women with metastatic breast cancer," Attai says. "If you don't fit into this narrow window with pink, 'happy' cancer, then the community has no place for you."

Partly due to efforts like BCSM's, women with metastatic disease say their concerns are far more visible this year than just a year ago.

Lessons spread

BCSM's founders say they would love to help other patients start or expand similar communities. Patients with very aggressive kinds of cancer, such as ovarian or brain tumors, often aren't healthy enough to form the sorts of advocacy groups that exist in breast cancer, Staley says. Often, these patients go immediately into aggressive treatments, which can make it difficult for them to organize support groups.

There are more than 2 million breast cancer survivors alive today, however, and many of them are relatively young and tech-savvy, she says.

Creating more communities like BCSM, however, would require finding moderators who are equally compassionate, dedicated and informed, Becker-Schutte says.

"They're pretty amazing," Becker-Schutte says. "They are doing for the community what they wish had been available for them in their initial diagnosis and treatment."

KEEPIN' IT REAL -- I MEAN -- REAL MESSY

My issues with my brain are all about getting started, keeping things on track, staying organized.  I am certain there are many people for whom this is has always been an issue.  If that were the manner in which I operated, this would not be a big deal.

However, I was always Miss Organization.  My work was always neatly arranged within my workspace and I knew how to prioritize.  Files in the cabinets were clearly marked and within a moment, I could put my hands on anything I might need.

Now?  Not so much.

From an alphabetized spice cabinet, I've come to a place where mail remains unopened for days.  Hell.  Sometimes it remains in the MAILBOX for days.  I have a number of different work areas but primarily, I've moved out of my office.  I can not stand being confined.  I dislike sitting at my desk.  My desktop computer is in need of an upgrade and frankly, I don't have the patience to reload all of the software.  I'll drag my Macbook any place that "calls me" in any given moment should I decide it's time to do something.

I tried rearranging my office.  It was some sort of pseudo, who the hell are you trying to fool, AnneMarie style attempt at Feng Shui.  Maybe the problem is that my desk faces the window and I am distracted by the outdoors.  Maybe it's because my back is facing the door?  I know plenty of people who refuse to sit in a restaurant where their back is to the room.  I suppose some of THOSE people have a "back stabber" thing going on?  I don't know.... I only know I have a traveling office these days.  It's the Macbook and where ever my brain tells me to go.  The brainless leading the brain challenged.

The only thing I do know?  THIS is progress.  This is what the floor looked like last night and this is what I am waking to this morning.  Every single thing is important.  And every single thing must be addressed.  Sooner rather than later.  Some of those notices require letters of reply.  Some require phone calls.  Others require payment.  Some require a deposit slip and a trip to the bank.  And yes, I do have the mobile deposit app on my phone but there is limit on the number of checks so it will take an entire week for me to make these deposits if I don't just go to the bank.  Bottom line?  ALL require attention.  Immediately.  My attention.  Except, I have the attention span of a flea.

In the midst of sorting this mess out, it became imperative that I snap a picture.  In the words of my buddy, "You can't make this shit up."  I couldn't stage this if I tried.  And, I already consolidated some of this stuff BEFORE snapping the picture.  I hear Beyonce.  She's singing to me....  "Sucks to be you right now."

I sure could use some help.  The pay sucks because technically, there is NO pay, but there would be a whole lotta laughing. Any takers?  I'm sure there are at least five "to do" lists in that mess somewhere.  Maybe we can turn this into a drinking game?  Thoughts?  Suggestions?  Perhaps gasoline and a match?

FYI <---- there are more papers beyond that binder and yes, it does extend this way ------> too.
Ladies Home Journal?  It was my 15 minutes.  Did you see it?  I have to preserve the copy.
Final thought, I think I got up because I ran out of room.  When I started sitting on the papers, I just got up and went to bed.
Cue Gone With the Wind and Scarlett:
I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow.

 

#MBCaware

Nearly 18 months ago, this post appeared on the blog of Rachel Cheetham Moro.

Read it, learn.  Mets matters.

The Cancer Culture Chronicles

Then, this link will take you to The Metastasis Research Center at Memorial Sloan Kettering.  I quite accidentally found this information as I was clicking around MSKCC website.  I did not realize they had an area dedicated to metastatic research. There are some pretty impressive names on the research roster and it looks like there's some pretty edgy science being studied. MSK leads the way.

I feel a difference this year.  I feel that we have made some headway.  Case in point?  The announcement by the NYS Attorney General last Friday.  Although that only scratches the surface, it's a significant scratch.  We are a step closer to transparency and every small step counts.

Finally, take a look at this report which was just released by Cone Communications, a public relations and marketing firm. The 2012 Breast Cancer Trend Tracker is filled with all sorts of information.  The best line is right at the top of the press release.  Click on over or read it here......  Keep being noisy.  The noise is beginning to spread.  Consumers are looking for a return on their investment.  In other words, how about some meaningful progress?  

Consumers Question Intent and Impact of Breast Cancer Cause Marketing 

New research shows Americans increasingly skeptical

BOSTON (October 18, 2012) – Nearly all Americans (92%) believe breast cancer is a critical cause for corporations to support, but just 26 percent feel companies have had a significant positive impact on the issue. Moreover, only half (52%) of consumers believe their individual breast cancer-related purchases make a difference, according to the2012 Cone Communications Breast Cancer Trend Tracker.

Buying with SkepticismFor now, supporting the breast cancer cause remains a viable cause marketing strategy for corporations – the “pink” halo effect is enough to prompt consumer purchase and participation. The majority (86%) of consumers report a positive impression of a company or brand that supports the breast cancer cause, and nearly half (45%) of consumers surveyed say they have purchased, or plan to purchase, a breast cancer-related product this October, National Breast Cancer Awareness Month.

Although three-quarters (74%) of Americans state they are more likely to purchase a breast cancer-related product or service during October over others, with price and quality being equal, they are becoming desensitized and increasingly skeptical.

• 77 percent of consumers think some companies support the breast cancer cause solely for corporate gain
• 68 percent say very few breast cancer cause promotions stand out to them, given the large number of programs in the marketplace
• 30 percent do not know whether their purchases actually benefit the cause

“Until there is a cure, breast cancer will undoubtedly remain a compelling issue for companies to support,” saysAlison DaSilva, executive vice president, Cone Communications. “However, companies must take heed as consumers become increasingly skeptical about their intents and impacts. At some point, consumers won’t continue to buy pink just out of the goodness of their hearts. They will want to know the return they are having from their participation and purchases.”

Consumers Demand ResultsToday’s consumers require proof of impact and deeper corporate commitment to the breast cancer cause. Almost all Americans say they want companies and brands to support the breast cancer cause year-round, not just in October (90%), and they wish companies would do a better job of communicating how consumer purchases advance the issue (88%).

Furthermore, consumers want companies to support the cause in substantive ways. Although just 6 percent are content with corporate dollars going toward disease awareness and education, consumers would prefer to see contributions applied toward research for a cure (46%), screenings and prevention (26%) and support for women and families affected by breast cancer (22%).

“Breast cancer cause marketing will only sustain its positive impact on corporate reputation and the bottom-line if companies demonstrate genuine connections to the cause beyond a transaction,” DaSilva says. “Corporations must do a far better job consistently communicating the return of their breast cancer cause efforts, as well as meaningfully articulating individual consumers’ roles in the fight against the disease.”

2012 Breast Cancer Cause Marketing TrendsCone Communications’ has identified five leading trends from the breast cancer cause marketing efforts this October, including:

• Diversifying nonprofit partners: No longer do one or two large nonprofits rule the breast cancer space in October. As the breast cancer cause undergoes increased scrutiny, brands are turning to distinct partners for a unique approach and impact. Nonprofits shining through include: Breast Cancer Research Foundationand Young Survival Coalition, among other niche organizations.
• Putting a face on the issue: Whether featuring real-world cancer survivors as campaign models, as in Ford’s Warriors in Pink “Models of Courage,” or naming products after breast cancer victims, such as Caribou Coffee’s “Amy’s Blend,” brands are connecting with consumers through true-life stories, quite literally putting the faces of breast cancer, not the brand, front and center.
• Shifting from the grocery aisle to the beauty aisle: “Pink” once seemed centralized to food and beverage products, but today the fashion and beauty industry is taking center-stage. From cosmetics, tojewelry, to apparel, the bulk of this year’s campaigns are coming from the beauty world.
• Going beyond donations: Some brands, like Avon and Novartis, are providing more than just dollars toward the cause – they are creating opportunities for people affected by breast cancer to connect to critical emotional support through online communities and social networking.
• Curating collections: Companies such as Sephora and Macy’s are offering carefully selected “suites” of products in support of breast cancer, giving consumers a wider selection of items to purchase and maximizing opportunities to capture support. 

About the Research: The 2012 Cone Communications Breast Cancer Trend Tracker presents the findings of an online Toluna QuickSurvey conducted October 4, 2012 among a sample of 1,000 American adults 18 years of age and older belonging to the Toluna.com community.

About Cone Communications:Cone Communications (www.coneinc.com) is a public relations and marketing agency known for igniting brands with high-impact strategies and programs based in deep insights, unique subject matter expertise and innovation. Focusing on key areas such as consumer product media relations, social media, cause branding and marketing, corporate responsibility, nonprofit marketing, corporate communications and crisis prevention/management, the agency is positioned to help clients achieve both business and societal outcomes. Cone Communications is a part of the Omnicom Group (NYSE: OMC) (www.omnicomgroup.com).

RIBBON REGULATION ?? WISH GRANTED !!

I'm speechless.  Yep.  Here.  Listen for yourselves:

 

Don't want to listen? You definitely should. This has a wow factor of about a million gazillion.  I've been yelling about pink ribbons since I started this blogging gig.  It was never really about The Color Pink.  It wasn't about the ribbon either.

How was I to know that I would quickly (indeed in the very same moment) become a woman with a disease AND a commodity "for the cause" .....   a way to make some money......... ?  Breast cancer has had a great cha-ching factor for many years.  For too many years.

And yesterday, there was a shift.  In NYS.  By the Attorney General.  Yesterday......  An announcement.  It's a small change that will begin a major shift.  It's the beginning of Ribbon Regulation.  Change does not happen overnight but change does happen by taking the first step.  Eric Schneiderman.  Remember his name.  His fingers are the first ones that began to untangle the ribbon.

I do want to break my arm and pat myself on the back.  I don't generally do this but I AM.  Two months ago, I bitch blogged.  On August 16.  The title?  Ribbon Regulation -- Is It Time?  I think a better title would have been It IS Time. Here's the thing.....  much of what I said in that post is said in that video clip.  This is me.  Committing one of those deadly sin things.  But I don't really care.  I'm kinda sorta feeling a bit proud of myself.  Part of my post reads as follows:

The ribbon is going to be here for a long time.  We are climbing a steep mountain.  It might be time for us to demand some ground rules.  A set of UNIFORM guidelines.  How's this for starters?  Where there is a ribbon and a company who stands to profit by having their name displayed in the same ad, the company is FORCED to clearly state their mission and their intention.

It's time for us to demand... yes, DEMAND full transparency.  If a for-profit entity runs an ad with a ribbon, their intent should be clear.  If their intent is to "raise awareness" I call Bullshit.  The awareness ship has sailed.  If the company is simply jumping on the pink band-wagon to tug on our emotions, they should be stopped.  If they are funding something, full disclosure should be forced upon anyone utilizing the ribbon.  Just like the ingredient labels on our food packages and the nutrition content that is now also mandatory, we need a "content label" affixed to every single thing that dons a ribbon.

I'm not big on government intervention but this situation has gotten so far out of control, it seems to me the consumers need to be protected.  Much of what goes on is false advertising and would not be tolerated under the marketing laws. Cause marketing has no rules.  No regulations.  No uniform set of guidelines regarding disclosure.

This is big business and there are billions of dollars at stake.  No more misleading ads.  It's time to hold everyone accountable.  THEN we will be able to see which companies are lending their name to the ribbon solely for their own profit and which companies are diligently raising funds and filling the coffers of organizations that are worthy of the money WE are spending on their ribbon products.

It's a start and we have to start somewhere.  All this chatter is making my head spin.  I need to see some suggestions. Some action.  Some ideas.  Something to change the conversation. 

Yesterday, it wasn't something.  It was someone.  It was the NYS Attorney General's office.  It was Eric Schneiderman.

Lots of people were made "aware" during Breast Cancer Awareness month.  Aware that they have been getting robbed. And the buck just stopped in NYS.  Who's next??

The AP release is here.

PS-Mom's in the oncologist's office today.  I'm not with her although there better be an open phone line if he's got something to say.  And he better not have anything to say.  Send good thoughts.  I'm tired of this shit and I know SHE is even more tired of it.

And more than that.... my friend Jada, a 34 year old in the twitterverse.....  good thoughts her way, too. Her "news" ...

I can't stop sobbing after hearing devastating news of breast cancer metastasis to my lungs #bcsm
— Jada (@Jada_FA) October 18, 2012

I want a do over, I wish today never happened, yesterday morning I was a 2x cancer survivor and tonight I have stage IV incurable cancer
— Jada (@Jada_FA) October 19, 2012

This.. THIS is why we can't stop. This is why we must be IN IT TO END IT. This is why I will be in NYC in the registration area for the Avon Walk hopefully encouraging everyone to enroll in the Army of Women and to join the Health of Women Study. Stop asking what you can do to help. Start acting.  Those are the two best suggestions I got. They cost nothing and you don't have to move from where you are RIGHT now. Click the links and get it done. We're working on the ribbon. It's time to start changing the rest of the landscape. It's time to stop this.  Yes. NOW.  The time is now.

CHEMOBRAIN, NFL, GRANTS, RESEARCH, ETC

What is it like to have my particular variety of chemobrain?  For starters, I get to write a title like that and have people say, "She's lost her mind. Completely. Lost."  And then, I get to somehow tie all of that and even more, into a neat little package.  After a long winded mess of information, a few twists and serendipitous turns, it will be a wrap.

For me, it's the ADD component that has taken up residence in my brain that gets in the way of my life.  I'm thrown off track and it can happen all too quickly and with minimal distraction.  Case in point?  This.  This?  This particular blog entry. I'll cut myself a little slack for reasons mentioned a few days ago but I've had this blogpost ready to go for at least two weeks.  Considering my whole reason for blogging was to reach out to the chemobrain crowd, one would think this should take priority.

I have news.  And I'm holding out.  Previously, I mentioned I participated in a clinical study using a specific software program to see if it would have a lasting effect on improving my working memory and addressing some of the other issues (FOCUS would be a really great one, for starters) attributable to the mess in my head.  I also shared a link to results that were presented by a researcher at Stanford.  She filled her study with the help of the Army of Women database.  That study also examined the benefits using a different software program.

Recently, the complete results of yet another study were published in the journal Breast Cancer Research and Treatment. Highlighted in Science Daily, the research of Diane M. Von Ah, Ph.D. points to the possibility that memory and thought processing speed may be improved though the use of a similar software program.  Dr. Von Ah explains a larger study will need to be performed to confirm her findings.  The content of the Science Daily article is reprinted below.  You know.... those pesky potentially broken or outdated links......And my OCD.

I suspect they are on to something with these programs.  I used CogMed which I enjoyed.  I have extension training for another 11 months.  The downside to CogMed, it requires "coaching" under the guidance of a neuropsychologist and it's costly.  As of now, it's not possible to sign up for CogMed and pay a subscription fee.  CogMed can only be used in conjunction with a trained doctor's office.  Or a clinical study.

The Army of Women study that I shared in an earlier post used Lumosity.  The exercises specific to working memory (aka the chemobrain problems) were developed by the researchers involved in that study especially for Lumosity.  The exercises were custom tailored for this gang.. us.. yes, that would be you and me, US.  I played around with Lumosity and I like the format and the exercises.

This latest study used a program by Posit Science called Impact.  You can set up an account at BrainHQ to access the program.  And the good news?  The exercises used in the study are available for free.  I've been using them for a couple of days and still haven't gotten to a point where I've been asked to subscribe to anything.  In other words, I don't know how far into the exercises one might go before being asked to subscribe but I will say that the cost appears to be nominal ($10.00 per month).  AND, the introductory period is long enough to determine if you like the exercises, if you will DO the exercises and if you begin to SEE improvement.

Besides the required reading about the study results, I have yet one more NEW article confirming that, "Yes, I Have A Chemobrain," which was, in one of those odd coincidences, published shortly after these study results.  You will find the article here.  Me?  I can't get enough validation.  Why?  It is DAMN frustrating to still have oncologists make statements like, "There's this thing called chemo brain but I don't believe in it."  Yes, that's a direct quote from the article.... and yes.... I'm going to form a posse if anyone cares to join me so I can show him what Dr. Von Ah has learned:

"Recent research has confirmed that chemobrain.... affects anywhere from 20 to 75% of breast cancer survivors who undergo chemotherapy.  Symptoms can last up to ten years.......... Until now, there have been no evidence-based treatment options...."

I'm all about evidence based treatment and science based evidence.  I know symptoms can linger beyond ten years based upon the published results of another recent long term study of patients treated with CMF (cytoxan, methotrexate, fluorouracil).  That 75% number?  While shocking to see it in print, I'm not altogether that surprised.

As for the validity of Posit Science?  In one of those other "serendipitous" moments, I received an email from BrainHQ confirming my membership.  And what else is in the email?  The concerns of NFL players and their cognitive health and how BrainHQ may be helpful for those who've suffered due to football injuries.  Unlocking the mystery of the human brain in any area, in my most unscientific brain, seems like it will spill into other areas.

Stick with me a moment.  You know this will be brought full circle and tied with a crisp bow.  Yesterday, I had plenty to say on my friend, Nancy's blog.  Nice Try, NFL is the title of the post on The Pink Underbelly blog.  It's an excellent piece and I left her a note and I MENTIONED in my note that I'd recently seen interesting commentary.  Someone was questioning how the NFL could be so hell bent on this crucial catch pink shit while simultaneously ignoring their own..... the "lower tier players" who stuggle with all sorts of brain issues and are unsupported by the league.

A little wagering:  I see Nancy's "nice try" and I raise a "good question."  NFL?  You in on this round?

Enter Posit.  And that email.  And what does it say?

"While there are not yet study results showing that BrainHQ training is effective for repeated concussions........ research is underway to measure the extent......BrainHQ can improve outcomes.... with brain injuries."

And the rest of it?  Well.... just like that panel I was on last week for breast cancer, there are other panels where consumers reviewers are at the table.  One of the CDMRP programs is for psychological health and traumatic brain injury. And so.... I am confident in the potential impact BrainHQ might have on our brains.  Posit Science has promised to keep us posted as the results are available.  They were awarded a $2 MILLION grant through that Department of Defense program in FY2010.  I did see the grant and the abstract on the DoD website.  I'd link to the actual grant but I can only link to the search page.  Instead, here is the announcement made by the company when they learned their application for funding would be the recipient of an award.

Let's just say my participation on a review panel gives me a bit of a unique insight into the process this program went through to receive a $2 Million grant.  BrainHQ is the real deal.  I know what it was like to sit in that room and I know how thoroughly these applications are scrutinized from every.single.angle.  I only saw round one.  These folks made it to round two and then, TaDA: funded! This is mighty impressive.  MIGHTY impressive...

I have absolutely no qualms about suggesting, "It can't hurt to try."

AND.... I do expect Idelle weigh in on this.

For now, this is Lou signing off.  Hey ABBBOOTTTTT......

ScienceDaily (Oct. 3, 2012) — A new Indiana University study is the first of its kind to show it may be possible to improve memory and thought process speed among breast cancer survivors.

Diane M. Von Ah, Ph.D., R.N., assistant professor at the IU School of Nursing and a researcher at the Indiana University Melvin and Bren Simon Cancer Center, and colleagues studied two different treatment options for breast cancer survivors because they often report problems with memory or feelings of mental slowness, which can lead to depression, anxiety, fatigue and an overall poorer quality of life. These symptoms can be severe and may persist after cancer treatment ends.

To date, there have been very few treatment options available for patients to deal with these problems. The IU researchers compared no treatment to two different training programs.

The results, recently published in the journal Breast Cancer Research and Treatment, showed that a memory training program improved memory performance, while a program called Insight, developed by Posit Science, improved both memory performance and the ability and speed in which the survivors processed information.

Memory training, for example, involved teaching participants strategies for remembering word lists, sequences and text material.

Insight is a computer program in which study participants followed a series of progressively more difficult information tasks.

"These results are encouraging in that both training programs led to positive improvements for breast cancer survivors. The results suggest that the Insight program may have a greater impact on these women," Dr. Von Ah said. "Even though this was the largest cognitive training study in breast cancer survivors, we need to confirm our findings in a larger study."

The study included 82 breast cancer survivors who reported concerns about their cognitive function, such as poor memory and mental slowness. All of the women had undergone chemotherapy. Each woman completed cognitive assessments prior to, immediately after, and two months after training.

The study was supported by the Robert Wood Johnson Foundation Nurse Faculty Scholar Program, an American Cancer Society Institutional Research Grant, the IU School of Nursing Center for Enhancing Quality of Life in Chronic Illness, and the Mary Margaret Walther Program of the Walther Cancer Institute.

Co-authors included the following IU Simon Cancer Center researchers: Janet S. Carpenter, Ph.D., R.N., and Michael Weaver, Ph.D., R.N., both of the IU School of Nursing; Andrew Saykin, Psy.D., Patrick Monahan, Ph.D., Bryan Schneider, M.D., Fred Unverzagt, Ph.D., and Jingwei Wu, M.S., of the IU School of Medicine; Menggang Yu, Ph.D., of the University of Wisconsin; George Rebok, Ph.D., of Johns Hopkins University; and Karlene Ball, Ph.D., of the University of Alabama at Birmingham.