Tuesday, April 29, 2014


Annie Parker.  Decoding.  DNA.  BRCA Mutations.

On May 2, Decoding Annie Parker will hit theaters and be available On Demand.  I should have been able to write more of a review of the movie.  I had two opportunities to see the movie in screenings.  The premiere in NYC was on April 2nd, 2013.  I WAS going.  I remember that I was going because it tied in to the Supreme Court hearing oral arguments just days later in the case against Myriad.

Then, I was going to a film festival in the Hamptons in October of 2013 where there was another screening.  It was there that the film's director, Steven Bernstein, was awarded the Alfred P Sloan Feature Film Prize.  Yes, THAT Sloan, the guy with the hospital..... MY hospital to be precise.

I don't know what derailed me both times, but I know that the wait is over.  I also know the message in this film embodies everything I've come to love since I took my first baby steps into social media by launching this blog.  From social media neophyte to patient-advocate, with the help of many along the way, every aspect of this film speaks to me.  Knowing one's own body.  Speaking out.  Advocating.  And from the science perspective, tenacity.  Those scientists who continue to push when they see a glimmer of something.

Today is part of a blitz campaign.  Full disclosure on my part.....  I don't promote anything that doesn't align with my beliefs but I was invited to join the fun by including this clip which is one of the lighter moments from the film.  Feeling Myself Up ....  the self breast exam.

There's another clip which is in the trailer that's below that's bound to bring a huge laugh although, when looking at the clip in context, it is from one of the more serious scenes in the film.  I'm guessing you'll figure it out for yourselves.

If you are reading this, you can help promote the film buzz by sharing in as many places as you feel comfortable.  And, if you haven't seen the film, plan to do so on Friday!

Any Breaking Bad fans out there?  Jesse (Aaron Paul) is in this movie.  Hope to get him involved in today's Social Media Buzz!  He already started:

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Monday, April 28, 2014


I have a ton of questions.  Maybe not a ton but definitely several.

There seems to be an underlying theme going on in my life.  Cervical stuff.

I wrote a blog post for the Share Those Moments project baring my soul and sharing, among other things, the need for the removal of my cervix when my hysterectomy was done in 2010.  There was a revival of the ethics of those cervical cancer studies in India.  Hell, I even sat in the doctor's office with a family member to discuss cervical spinal issues.

And now this??

The FDA has approved the first new alternative to the PAP smear.  It is a test for HPV that was designed by Roche.  For first line screening of cervical cancer? Quick everyone, call your stock broker if you have one.....

I'm still trying to wrap my brain around this so bear with me.

Let's start with the quote from the FDA:

"Roche Diagnostics conducted a well-designed study that provided the FDA with a reasonable assurance of the safety and effectiveness when used as a primary screening tool for cervical cancer."

And now, let's start with the big question from the big mouth advocate and in this case, activist.  Can I see the "well designed study?"  It may very well be that this would satisfy my concerns by answering all of my questions.  As of this moment, the whole thing seems ass backwards.

Reasonable assurance?  WTF does that mean?  Don't insult me by using that kind of terminology.  Show me the data.  Give me the numbers that are behind this so called reasonable assurance.

Should we not screen for cancer by actually looking at the area to see if cancer or pre-cancerous cells are present?  Testing for a virus does not equate to cancer screening.  First of all, are they CERTAIN they have identified all cancer causing HPV strains? I'm going with, probably not.

Once again, enter Dr. Eric Suba.  I was already a big fan, I'm officially elevating him to hero status.  He saw the post on my Facebook page and provided me with a link to a blog written by a pathologist.  Quest Labs was present at the FDA hearing and provided some interesting comments.  The post written on the Pathology Blawg contains a ton of information and lots of links. Read it and then please, rage along with me.  Join me in my armchair activism.

Bottom line, only examination of cells can detect if there are abnormal cells present.  The real bottom line, Quest provided the FDA with solid numbers.  Using information from over 3.7 Million women, they found that nearly 5% of the women with advanced dysplasia or cancer were HPV negative.

In their estimation using information from this vast database, this now FDA approved for primary screening tool, could miss 13.5% of those with cervical cancer.  The American Cancer Society estimates that 12,360 women are expected to be diagnosed with cervical cancer this year.  In other words, 1670 undiagnosed women.  In MY words:  UNACCEPTABLE.

A few notes.  The PAP test is much less expensive than the HPV test although I suppose the logic is that less testing would be done if someone tested negative?  The thing with HPV?  It spreads pretty easily and the use of condoms do not guarantee protection against the disease.  Read the CDC fact sheet.  It's worth mentioning if I test negative for HPV today, I may have a sexual encounter shortly thereafter and become infected.  I may have that encounter with a person with whom I THINK I'm in a monogamous relationship.  Shit happens.  There are too many damn uncontrollables.

I already did lots of investigating on HPV when I had my own cervical cancer scare.  Yes, I have one of those two bad strains.  I think they identified four different strains when they did my HPV test which was done AFTER my PAP returned those crappy cells.

Just because the FDA approved the test does not mean this is the law of the land.  Five major medical professional organizations are opposed to this recommendation or whatever the hell it is.  Those would be the US Preventative Services Task Force, the American Congress of Obstetricians and Gynecologists, the American Cancer Society, the American Society for Colposcopy and Cervical Pathology and the American Society for Clinical Pathology.  Their objections were dismissed by the FDA in favor of the "well designed study."

Yes, I want to see the study.  I want to see a transcript of the FDA hearing.  I want a list of those who voted (unanimously) in favor of this test.  It's all out there.  I haven't had the chance to read it but I'm pretty sure I'll remain unconvinced.

Also, in a 24 hour news cycle, even though this first hit my twitter feed last week, the approval was over a month ago.  I'm losing my edge.

Actually, I'm not surprised.  Too many distractions.  Now that I've seemingly emerged from income tax hell, I'm jumping into annual doctor season.  Tomorrow is my annual oncology follow up.  I have no scanxiety since the appointment is going to amount to a chat.  There will be no blood test, there will be no scans.  Makes me wonder about the need for the appointment.  Thursday, I have an MRI to check the implants.  Next week, the dermatologist (remember, the increased risk for melanoma thing...) and then the plastic surgeon.

Come to think of it, I have to find a new gynecologist.  I think it's been a year.  I wonder what s/he will do about a PAP test since my cervix is in that big old medical waste field.  I wonder if s/he will recommend the new Roche test.  Stay tuned.....

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Friday, April 25, 2014


It was several weeks ago and I've been trying to put my thoughts together since I watched this in real time.  There was a congressional hearing led by Congressman Tim Murphy.  He is a sponsor of HR3717, Helping Families in Mental Health Crisis Act which is be

Seated at the table before the congressional members, were people advocating on behalf of the community this bill seeks to help.  They each shared their personal experience within the context of the larger picture.  Advocacy.  The message is almost always more powerful when the face of the community can be infused into the message.

The picture is large and it is rather complex.  Treatment of mental illness is challenging.  Pinning down a proper diagnosis so appropriate treatment can be suggested is challenging.  Getting appropriate treatment is challenging in ways that I find to be disgraceful.  Balancing the rights of an individual with a mental illness against the desperation of loved ones who want to see a treatment plan enacted is beyond challenging.  Finding the money to pay for all of this, presuming all of the other obstacles have been addressed may prove to be impossible.

Representative Tim Murphy is a practicing clinical psychologist.  He has the street cred to speak on the issue of mental illness. He understands the challenges of life with a mental illness and he is uniquely positioned to analyze the agencies tasked with providing proper care for those among us who need care.

Before I shoot myself in the foot by shooting off my mouth, I know there are debates swirling about the bill.  There are those who express concern about the rights of individuals to refuse treatment, concerns about what is called AOT.  Assisted outpatient treatment.  I'm sure there are plenty of other concerns by other parties.

Congressman Murphy listened intently during the hearing.  And then he engaged the speakers.  His no-nonsense approach may have offended some but I would not be one of those offended.

He posed a question to the four panel advocates.  He asked for a yes or no answer.

"Did you read the bill?"

Three of them admitted to only reading parts of the bill.  I find this distressing.  How can high level advocates speak on behalf of a community about such an important piece of legislation and NOT show up prepared.  Fully prepared.

I read the bill in its entirety.  The emphasis appears to be on evidence based treatment and the dignity of patients.  It seeks to address what the family members refer to as "HIPAA Handcuffs."  When treating a person with a mental illness, observations from family members are (or should be) a key component in the gathering of information.

Is it possible some might find ways to manipulate parts of the bill causing harm to the very people the bill will help?  Of course.  There are always going to be ways for an enterprising individual with a less than pure agenda to twist the rules. Find the loophole.  For whatever reason.  Engaging a strong and robust community of advocates who understand the importance of evidence based care, advocates whose voices are there as equals, not as tokens, may quell some of the fears.

Those involved in reforming the way we treat persons with serious mental illnesses would do well to realize advocates must be brought to the table.  Not famous people, not people seeking to push the agenda of any organization and certainly not anyone who is looking to make their personal mark.  True advocates with nothing but the best interest of each patient at the heart of what they do, can and will make this work in the way it is intended to work.

From my vantage point, it seems this legislation is a step in the right direction.  A giant step in the right direction.  As it exists today, I can't even say the system is broken.  The fact is, there is NO system.  Any change would be good.  The bill proposed isn't intended to bring about small, incremental change.  It's a solid foundation for a complete overhaul.  It addresses pretty much every angle.  And still, it's just a start but we must start somewhere.

Tweaking may be needed but damn, those who stood before congress on behalf of the community dropped the ball.  You don't show up without a full understanding what is being proposed in its entirety.  That's ineffective.  It's not proper advocacy.  If we don't want to be dismissed, it we want a seat at the table, we simply must do our homework.  If we want to be heard, first we must listen.

The big picture.  Good advocacy requires the ability to look at the whole picture and realize there may be trade offs but at the end of the day, is the change proposed going to improve lives?  The answer is a resounding YES.  How on earth can one expect to be taken seriously if they aren't prepared?  We don't advocate for ourselves, we do so for the betterment of a community as a whole.

Scrutinizing and criticizing just the portion of a proposal that addresses personal concerns is not going to advance the role of advocates in the mental illness arena.  Indeed, it will set back a movement that, when compared to cancer advocacy, is barely off the ground.

How can I say that?  Quite simply, there is a major conference in ten days.  The conference concludes with a lobby day. Although the National Council for Behavioral Health seems to be an umbrella organization, there doesn't appear to be a "normal person" advocate component to this meeting.  The unique perspective an advocate can bring to the conversation is missing and that's a shame.  There is much to be gained when the big people collaborate with those of us in the trenches.

Alas, I am interested in joining the National Council Community Advocates to see how I might be able to help.  Unfortunately, the invitation to click the link to learn more is "coming soon" --

Soon is not soon enough.

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Monday, April 21, 2014


I've written about this a number of times.  I've expressed dismay, outrage and downright disgust at the whole thing.  Women in India were treated like lab rats.  They were allowed to die of what is considered a highly curable disease.  Cervical cancer.

Back in February of 2013, I wanted to know why the shit hadn't hit the fan.  This was the very first time I wrote about the questionable ethics associated with two different studies.  The blog post had a similar title about shit hitting fans.

A bunch of things happened between February and September which prompted a few other blog posts.  I attempted to outline the whole sordid mess with links to everything I could find in this post.  If you aren't familiar with the story, that might be a good place to start.  Bearing in mind I have challenges when a story has enough pieces to assemble a decent sized jigsaw puzzle, it may be hard to follow.  Stick with the bullet points and you should be okay.

Today, an update.

Dr. Eric Suba deserves a ton of credit for his tenacity.  Ditto Bob Ortega for writing about it again and again.

Dr. Suba delivered a keynote less than one month ago at Tuskegee University: "Tuskegee 2.0: US Funded Cervical Cancer Death Rate Measurements in India."  The keynote was at a commemoration of the 1997 apology by President Clinton for the shameful Tuskegee Syphilis Study.  I'd say that was a pretty big deal.  In a Facebook post, Dr. Suba synopsized his talk as follows:  "...you can't let people die to show something you already know; that, if you do, you should apologize; and that somewhere between Tuskegee 1.0 and Tuskegee 2.0, greed became good."

Right; Right; and Right.  On all counts.  And many more.

On April 17th, an article by Dr. Suba was published online, ahead of print in the Indian Journal of Medical Ethics.  He discusses the ethical and the scientific concerns behind the studies.  There were two.  Both were funded with US dollars.  The NCI funded one of the studies, The Gates Foundation funded the other and ASCO touted the whole tragic mess as a great success story.

Personally, I think ASCO dropped the ball on this one.  Actually, I KNOW ASCO dropped the ball.  These studies broke absolutely NO NEW GROUND.  We don't need to set up a randomized control trial to provide care within the existing infrastructure in third world countries.  We do need to find ways to just get the job done.  ASCO turned a researcher using highly suspect methods into a hero.

Women died.  Unnecessarily.  The count is now 254.  The story appeared in today's edition of The Times of India.  According to the article, these studies would not have been permitted "in the country of the funding organizations."  Damn straight.  And each of the studies was in violation of both international and national (Indian) guidelines.

Who's going to be the first to apologize?  There are 254 families that deserve far more than an apology.  And countless others, too.

ASCO?  Bill &/or Melinda Gates?  The National Cancer Institute?  The US government?

Yes, yes &/or yes, yes and yes.

But I'll start with me.  As a citizen of this country and a patient advocate with a big mouth, I would like to apologize to the women of India and to the families of those women.

This should not have happened.  Not. Ever.  And I'm deeply sorry.

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Thursday, April 10, 2014


To say it's been a bit busy is a tad bit of an understatement.   I'll spare the details except to say that April 15th is looming and I hope there will be no extension to file personal taxes this year.  To say THAT has been a challenge is a massive understatement.

I'd like to share an infographic that was sent to me by DegreeLibrary highlighting their findings with regard to "brain training."

When I had my neuropsychological evaluation in 2011, I've already shared that "areas of difficulty" were identified.  Since these "areas" were all around numbers, it explains the challenges previously mentioned at the opening of this post.

I participated in a clinical study using CogMed software.  The results have yet to be published.  The only thing I DO know is that I was using the real program.  There was a placebo arm in the study and after all of my evaluations were complete (1 month and 3 months after the conclusion of the five week training), I was told I was using the real deal.  This was a good thing because there were times during the training I was ready to hurl my laptop at the nearest wall.

Bottom line, although CogMed is not specifically mentioned in this chart, that particular software program was written up in Science Direct.  Bottom Bottom Line.  We simply do not know if these programs are helping the general population and we definitely don't know if they are helping those of us whose brains may have been damaged from cancer and/or the treatment of cancer.

I'm all about hard evidence.  Good science.  Right now, there is no hard evidence for any of this.  And, I recall the brilliant doctor who was at the head of the study protocol telling me, "Don't waste your time with crosswords or sudoku.  If you like doing them, do them for enjoyment but you won't derive any medical benefit."  Of note:  the crosswords and the sudokus were actually hurled at the wall.  They were chemobrain torture.

I learned about working memory and short term memory.  Yes, they are different.  I understand lots about neuroplasticity of the brain.

I've learned much.

Mostly, I've learned that without an assistant at my side to keep me on track, to keep me from flying off the rails, I can NOT perform at the levels I could in my pre-cancer life.  I know there are many of us in this boat and I know, too that it's really frustrating to constantly hear, "I didn't have cancer/chemo; what's my excuse?"

I don't know about you, but I CAN discern a chemobrain moment from a senior moment.  They are different.  They feel different.  I will readily admit my normal senior moments.

Thanks to Aria Cahill for sharing this with me.  Just like there is lots of talk about those standardized tests they administer in school which I happen to feel stifles real learning because teachers are forced to teach for the test, are we simply just getting good at the games because we're using the games?  Is it translating to real world situations?  I'm not so sure.  There is much work to be done.

The short answer to my question, "Do brain games help chemobrain?" is quite simple.

We just don't know.

And this is food for thought......


Brain Training

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Tuesday, April 1, 2014


This was pretty awesome.  And nerve wracking.  And thanks to the flu, although I was able to write what I wanted to say, it wasn't so easy to nail the entire thing from memory.  As you can see from the photo, there was no podium, no microphone (it was clipped on my ear)--it was just me.  Talking.

TED style.  No props.  No powerpoint slides to guide me along.

This was the launch of the Second Wind Tour.  The energy was wonderful.  My talk as I intended to deliver it can be found below the photos and copies of the tweets.  I know I missed a few points at the very end but I felt very strongly about not having papers in my hand.  OK, I'll admit it.  That had more to do with vanity than the papers.  I didn't want to wear my glasses.

My iPad was on the music stand.  As I walked on stage, I placed it on the stand, sharing with the audience, "How they asked someone with chemobrain to give a talk is beyond me, thus, the iPad -- just in case....."

I would be remiss if I didn't offer tremendous thanks to Health Republic of NY who sponsored the NYC leg of the tour.  YES, my health insurance company.  They invited me to speak on their behalf, to tell my story and I certainly hope I met their expectations.

Thanks, too, to AARP NY for sending this into the twitterverse with the accompanying photo!!

And to Beth Finkel, AARP NY State Director for sharing the last part of the show.  The musicians are world class.  Samite is from Uganda.  To say he is a humanitarian barely scratches the surface.  You simply must go to his website if you are not familiar with his work.

And mostly, thanks to all of you, for reading, for sharing, for connecting.  If not for each and every one of you, none of this would have happened.  Without the connections here, there is no second wind.  I am deeply humbled and so grateful for the gifts you have bestowed upon me.  


It's never too late to become who you might have been.

George Eliot, a British author is credited with that quote.

When my daughter was in her teens, she would frequently suggest, "It's never too late, mom," in response to any remark I might make about doing just about anything.  We had a habit of doing this dance.  One of us exasperated (Her), the other, eye rolling (Me).  I recall on more than one occasion explaining to her that there IS a point in life when these great inspirational quotes no longer apply.  That it is too late to switch paths, change course.  Only in the movies, does someone hop off a tour bus and decide to start a new life under the Tuscan Sun.

She was young and idealistic and I was seasoned and jaded.  And realistic-or so I thought.

In the spring of 2006, a curve ball was thrown my way.  This is just a teeny snippet of what happened in the span of 15 months.  My routine mammography returned suspicious findings.  Three biopsies and almost four months later, I was told I had invasive breast cancer.  Several surgeries, procedures and eight rounds of chemotherapy followed.  Midway through my own treatment, my dad, a healthy 70 year old, was diagnosed with an early stage lung cancer.  For a while we were on parallel treatment paths, I can think of better paths to share than cancer.  Complications from treatment would cause his untimely death less than a year after my own cancer diagnosis.  As if the times weren’t rough enough, three weeks after my dad’s death, my mom was diagnosed with breast cancer for the second time, 20 years after her first bout with the disease.

To say that I was frenzied, doesn’t even begin to describe how I felt.  I experienced the full gamut of emotions.  Fear, anger, denial, sadness.  It was messy time but slowly things began to get back to normal.  I settled back into work: managing two commercial construction companies and doing all of the accounting for each.  As the weeks turned into months and the months extended beyond a year, I noticed I was struggling to keep all of the balls in the air.  I blamed it on the work load, I blamed it on the constant interruptions, I blamed it on being pulling in too many directions by too many people, I blamed it on everything I could think of until I finally came to the realization, maybe, it’s YOU.

I had a neuropsychological evaluation done by a doctor who understands the nuances associated with chemotherapy induced cognitive impairment.  Chemobrain.  After a series of tests than spanned more than three hours, I felt like my brain was dripping out of my ears. The doctor shared some preliminary findings.  She told me she identified areas of difficulty.  Quote:  “Your problems are primarily around numbers so it’s not really a big deal.”  She looked down at her notes, saw the word “accounting” which prompted her to say, “Well, I guess in your case, this could be a problem.”  Ummm, yeah.  Little bit.

At that moment, and in the days and weeks that followed, I was a lost soul. My skills were in accounting and management.  I wasn’t marketable.  I was too old AND I was incapable.  Sitting on the sofa watching mindless TV, really not for me. 

So, Now WHAT??  A friend suggested I might consider writing a blog. “ABOUT WHAT?” I wanted to know in a tone that wasn’t exactly friendly.  “Breast Cancer?  That’s utterly ridiculous.  There are enough voices in cyberspace about breast cancer.” Plus, I didn’t know a thing about blogging. My understanding of the internet didn’t extend much past Dr. Google and finding my way on several occasions into that internet pine box.

My only knowledge of social media was Facebook.  And the sole purpose of FB was a means of stalking my kids.  Checking their updates was a way of knowing they were okay without being a complete nag.

My friend was persistent and relentless with the blog gig.  Same tone, same tenor, same words.  Her: “Write a blog.”  Me: “About What?”  Until one day she said, “Chemobrain.”  Suddenly, my tone and tenor went from “you are annoying me to no end,” to “Now that’s something I might be able to do.” 

When I realized my life took a turn to the left and I was still going straight, I could fight it or I could embrace it.  I could continue my present path, or, I could choose to turn left and see where it might take me.  I don’t buy into the “cancer is a gift” theory—Seriously, where’s the receipt, I’d like to return it---- OR that my cancer diagnosis was part of some grand plan for me to live a more fulfilled and meaningful life.  I was quite happy with my life and this is not a path I would have chosen to take.

A cancer diagnosis IS a pretty big deal.  It’s traumatic.  While you are in treatment, it’s an in your face thing.  Then, the active part of the program subsides and that’s when the fun begins.  Learning, not only to weave the trauma into the tapestry of my life, I slowly realized it was a catalyst for post traumatic GROWTH.   

I began to write.  I found my voice.  I found a passion previously unbeknownst to me.  I reached out to people.  I volunteered at the hospital where I was treated and I volunteered with a number of local and national research and outreach organizations.  I made tons of friends.  The magic of community that began on social media spilled from the computer screen to my brick and mortar world.

I think of all of the relationships and the opportunities that have come my way because of that silly little blog.  My life is completely different from anything I could have envisioned.  And exponentially more fulfilling.  First it was about the writing, hoping that my words would resonate with just one person, validate the feelings of just one person.  Then, it became so much more.  It served as the conduit to The Next of My Life.

Somewhere along the line, I turned into a science geek.  I pore over new research findings.  I follow meeting hashtags – if you aren’t familiar with twitter, that means nothing to you but there is power in that little tic tac toe board, the hashtag.

And somewhere else along the line, I turned into someone who is unafraid and unapologetic.  I speak out about what I believe to be true and just and I speak for those who struggle to make their own voices heard.

I’ve found ways to tune out the static, to focus on following where my heart and my thoughts are trying to lead me.  I still shake my head in amazement at some of the things that have happened over these past two years.  I cherish every relationship that has developed because of that blog.  I stand here today because I walked away from what was familiar and comfortable and embraced something so different from anything I knew.

A rebirth.

Sometimes, we can become who we were meant to me and in my case, I think it’s about time I apologize to my young and idealistic daughter for every single one of my jaded, seasoned eye rolls.

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