Thursday, January 31, 2013


I'm off doing a little investigating today.  And I expect I'll be doing the same tomorrow, too.  Today's investigating is specific to chemobrain.  Tomorrow?  Breast cancer.

At the request of my mom, I am extending a most heartfelt thanks on her behalf.  Each and every day when we speak, she mentions the blog.  She reads the comments.  She sees all of the well wishes, the thoughts, the prayers, the hugs and she is simply overwhelmed with gratitude.

When I began writing, a little more than 18 months ago, my mom was one of the two people reading what was on the screen.  (I was the other one.)  She was, and still is, my biggest cheerleader.  She has shared the blog with many.

In many respects, with her recent diagnosis, this space now belongs to her, too.  Last night, she asked me to please take the time to make sure everyone knows how much she appreciates seeing the way she is mentioned by so many in the comments.  I am so thankful, so immeasurably grateful for the way my mom has been embraced by so many.

I'm sure she never expected to be on this path and I'm even MORE sure that I never expected to be on this path, either.  I now have first degree relatives in every conceivable breast cancer arena:

  • Save the lives of those with metastatic disease.  For my mother.
  • Prevent the disease from occurring in the next generation.  For my daughter. And my sister.
  • Stop the spread in those who have already been diagnosed.  For me. And my "baby" sister.
That pretty much tells the whole story and everyone who reads this fits into one of those categories.  Men included. Wherever you fit, know that I'm in this for all of you, too.

Thank you for caring so much and for sharing your words with me and with my mom.  This extends to those on twitter who may not read the blog.... and I will be sure to share my thanks in the twitterverse, too.

Now.... if by chance you missed yesterday's entry.....  Here are your choices:

  1. Go read it now.
  2. Go straight to Medivizor and request an invitation.  There (THEIR-- ed correction, I really DO KNOW proper use of these words) service is spectacular and it will only get better as more of us are asking for their guidance with our individual diagnoses.
Many people read yesterday's post.  I hope many also requested that invitation.  And I further hope when the email arrives, you will follow through.  It will not take long and then, it will serve as your own personal "alert system."  Please do share... please spread the word...

And please do know that you have made a difference with your words.  The kindness has not gone unnoticed and it is appreciated in ways I can't even begin to describe.  By my mom... and by me, too.

Thank you... Thank you so very much.

With love,


Wednesday, January 30, 2013


We've all done it.  We all DO it.  We've undoubtedly all been ADMONISHED by at least one good friend.  Don't.Do.It.

Something isn't quite right.  I can recall a summer afternoon not so long ago when I tripped or slipped or lost my balance. It didn't happen once.  It wasn't twice.  It was the third time that send me over the edge.  In the first place, I'm lucky my wrist didn't snap like a toothpick.  Mostly, I was petrified.  I was standing and then I was on the ground.  No dizziness.  No blackout.  Nothing.  Just standing and then down.

Instinctively, I grabbed the phone to call my "talk me off the ledge" buddy.  When she jumped into advocacy mode and started talking brain MRI, I very lovingly assaulted her with a barrage of curses that would have made my very colorful grandmother quite proud.  She's a great friend.  She knew to back right off and just hand hold.  "Ok, so we won't schedule an MRI."

In the next sentence, she began talking about a spa.  I want to return to Miraval.  I'm more of a sea person, but the mountains in Tucson were captivating and the grounds are serene.  Plus, I have visions of that zipline.  The conversation began to sound a bit bucket-list-ish and my dear buddy may have heard a change in the tone of my voice.  Or, she may have heard me pecking on the keyboard.

"AnneMarie, Get OFF THE INTERNET."  Voice slightly louder, "Are you listening to me?  There is nothing wrong with you.  Shut the laptop RIGHT this second!"  I see you all nodding in agreement.  You KNOW exactly what I mean.

Enter:  Dr. Google.

And suddenly, things begin to get a bit dicey.  I use the internet responsibly.  Unless I'm having a twitter war, which, incidentally, happened last night and I'm still a bit stunned.  Another day.  Let's just say that I may **think** I know it all, but I **know** that others know their all, too.  I don't impose my will on others and I will never understand how a person can barge into a conversation with a comment and then begin to make remarks that are haughty and utterly ridiculous.  I have about as much patience for comments that fly in the face of logic as I have for those splashy headlines.

I'm way off point.  And yes, there is a point and it's a rather important point.  I was introduced to a new website within the past two weeks.  Here is where I would normally go check my email account to nail down exactly when I first learned of the site because minutiae is what I seem to do best these days but I'm refraining/restraining myself.

This is big picture and I'm quite impressed with this big picture and I'm even more impressed by this website.  Medivizor. There are endless resources on the internet to find medical information.  Used responsibly, the power of the most brilliant minds is at our virtual fingertips.  Breast cancer?  A quick google search for "breast cancer information" yields 220 MILLION hits in two tenths of a second.

That's GREAT stuff but seriously???  How can anyone be expected to sort through that much information?  How much of it is pertinent to my needs?  Is it outdated?  Is it some crazy blogger with a mushy brain who can't get out of her own way?  Is it some researcher at, oh, I don't know, Duke University trying to sell me on some skewed information based upon observations of women treated over twenty years ago?  FYI, in medical years..... telling us about what happened 20 years ago in medicine is akin to deciphering the etchings of a caveman.  Just sayin'

Step aside, Dr. Google:  Enter Medivizor. 

I was intrigued and I decided to take it for a test run.  Or two.  This is a streamlined website that is clean, uncluttered and easy to use.  In less than three minutes, I set up a user name associated with my email account.  Then, I answered a few questions about my present health condition and how I got here.

I was diagnosed with invasive lobular breast cancer in 2006.  I had a bilateral radical mastectomy with reconstruction.  I did chemotherapy and I am presently on hormone therapy.  I am currently NED.  My chemotherapy drugs were cytoxan, methotrexate and fluorouracil.  My hormone therapy is femara.  I don't take anything else.  Except an occasional anxiety medication when, for example, someone tells me that breast cancer treatment is not evidence based, it's "consensus based" or when a medical journal screams that lumpectomy saves lives.  (It's the bit of Sicilian blood infused into my veins from my mom... can't help it..... I'll let it go now....)

Obviously, I'm not altogether too concerned with HIPAA having just outed my medical history in this very public space.  The point .... Medivizor has MY unique health information.  Except they don't know it's ME.  They ARE concerned with HIPAA and my privacy (a lesson I might want to learn one day?).  They only know my user name and the email address I gave them. What happens next?  I receive notifications.  THEY troll through the 220 million hits and THEY find the items that are recent and relevant to MY life.  It's a personal relationship.

Medivizor and me.

An email notification that there are articles that I may find pertinent directs me to my page where I can read the article. No splashy headlines.  Just facts.  Medical facts.  From real medical journals.  I can highlight sections that I find to be of particular interest, make notes on what looks like a post-it and let them know if the article was helpful, or not..... and this is just the beginning.

The site is brand new.  There are plans to include matches to clinical trials.  Clinical trials save lives.  They advance research.  Part of how I came to this point in my life is because of my involvement with Love/Avon Army of Women.  A quick glance at tells me there are almost 140,000 trials in every state and in 182 countries.  I'm anxious to see the clinical trials function rolled out.  Research matters.  As an advocate, I like to see what in the pipeline.  As a patient with a semi-fried brain, I'd love to see some solution oriented trials nudge my brain back to something just a bit more organized.

I'm impressed.  And they've barely scratched the surface.  I can see endless possibilities.  I've signed up as an "early adopter" and I hope you will consider joining me.  This is not just for the breast cancer crowd.  As of today, in addition to breast cancer, the invitation is also extended to those dealing with prostate cancer, colorectal cancer or diabetes. Melanoma is right around the corner.

I see my friend, Jean Campbell at No Boobs About It is as delighted as I am with her experience on the Medivizor site.  You can read what she has to say, you should read what she has to say.  And then, I would say, just do it.....

Click the link and request an invitation.  Sit back, relax and watch the information begin to flow.  No worries about inundation of information or inbox overflow.  They got this.  It's measured and controlled and for me, this has a Wow Factor on a scale of one to ten?  An eleven.  Easily.  Eleven.

And did I mention?  I'm impressed.

Note to mom:  Medivizor has your back, too.  I said I took it out for a test run or two.  I decided to challenge them with two diagnoses.  Stellar.  Positively stellar.

Tuesday, January 29, 2013


I planned something else for today's blog but this is in keeping with my dislike of statistics.  I also tend to dislike headlines. Yesterday, the following headlines appeared in my medical news feed:

Lumpectomy Saves Lives In Early Breast Cancer

Lumpectomy May Have Better Survival Than Mastectomy

I can NOT be the only person on the planet who is thinking, "These headlines couldn't possibly be about the same data." And yet, they are.

SAVES LIVES is the way the headline appeared on MedPage Today.

MAY HAVE BETTER SURVIVAL is the way it appeared in Medscape.

You must sign up to access the pages.  It's free but you will need to set up an account and password.  

Bottom line?  Both articles are well written.  The Medscape one digs a bit deeper.  Some important, some VERY important pieces of information should be noted and based upon that information BOTH of those headlines are irresponsible.  They are misleading.  I suppose that will be this week's theme?  Skewing statistics, twisting the truth.... sensationalizing headlines.

Geez..... It's even on a .gov site, a service of the National Institutes of Health.  A direct quote:

"The results of the study: Women were more likely to survive breast cancer if they had the less invasive lumpectomy plus radiation, versus mastectomy and this was the case across all ages."

Ummmmmm.  NOT EXACTLY.....

I'm going to pull out the parts that I feel should be taken into consideration before such broad strokes are painted. Medscape starts one section of the article "Nice Study, But........"  And yes, BUT ..... Medscape reached out to two independent experts for their opinions.  While they were impressed with the study, they "expressed reservations about the findings."  Me, too.

One expert observed that the results seem "counterintuitive" and noted that they may be a reflection of unmeasured variables.  "Unmeasured variables include the use of adjuvant systemic therapy."  In English?  Chemotherapy.  When they analyzed the the data, they looked at the years involved for each of the groups.  It appears those in the mastectomy group were treated at a time when chemotherapy was primarily administered when there were lymph nodes involved.  Advances in chemotherapy are credited for a large part of the mortality reduction over the past two decades.  Another expert said that the absence of data regarding whether or not chemotherapy was administered was "especially concerning."  DAMN right.

Chemotherapy for the lumpectomy patients and not for the mastectomy patients?  Those of us who have had the pleasure of sitting in that chair can attest to the fact that CHEMO COUNTS.  Really?  These data were not included in the observational study??  Then, there was an issue regarding access to care among the mastectomy patients.  There are quite a number of glaring holes in this "observational study" with the splashy headlines that are ONCE AGAIN sending an overtly skewed message.

The researcher who conducted the study and her colleagues "admit that various unmeasured variables were 'likely' to have biased the findings toward higher mortality in women who underwent mastectomy."  And yes, "likely" is in quotes in the article.  REALLY???!!?!?  Ya THINK?????

Don't tell me half a story.  Put it ALL out there.  I'd love to know how much money was spent and the number of resource hours used to put this thing together.  Damn.  This feels like it wasn't even an observational study.  It feels like someone said, "Let's prove that lumpectomy is better than mastectomy and let's find a way to tease that information out of the statistics to show we are right."

If anyone can not log in and wishes to see copies of the articles, send me an email and I will be more than happy to share them with you.

Just to pour some gasoline AND fan the flames, this comes on the heels of a study published in Medscape on January 15. The title:

Bias and Spin in Reporting of Breast Cancer Trials

The first sentence reads:

Clinical trial investigators are often biased in their reporting of results from breast cancer studies, and they use spin to emphasize secondary results when the primary end point is not significant.

Emphasis mine.  I can email that one, too.

This whole thing?

It's very disingenuous.  Again.

Monday, January 28, 2013


I'm not a fan of statistics.  I really never was... and as I am writing, I'm staring at a copy of "The Complete Idiot's Guide to Statistics."  There is something oxymoronical in the title.  I can't quite put my finger on it, but statistics, unless they are very focused and precisely stated, can be bits of useless and quite possibly, damaging information.

My feeling about anyone pushing a statistic ad nauseam?  Take a step back and analyze.  When the same words are parroted over and over again.... and crammed down our throats so frequently that people begin to blindly repeat those words, someone has an agenda.  Using the statistic is a way to skew information to punctuate the agenda.  I make no apologies for stating this as a fact.

Here's my beef.  And lamb and chicken and tofu, too.

Presently, I am six and a half years NED.  No evidence of disease.  Well yay, me.  I passed that magical five year mark. And THAT is the statistic that has been running through my semi frozen brain over these past several days.  You see, I'd like some clarification of that particular little nugget of information.  That marker that is seen as The Holy Grail in Cancerland.

In 1987, when my mom was diagnosed with her first round of breast cancer, at the ten year mark she was declared NED.  I don't know what terminology was used but the politically correct verbiage in 2013 is NED.  So I will stick with NED.  She is included in the five year statistic.  Fast forward to 2007 and she does Breast Cancer Round Two. And once again, she passed the five year mark.  And this is my problem.

Is my mom being counted twice?  She's only one person but counting her twice makes the statistic look better, doesn't it? And what about now?  Less than six months after hitting that magic marker, she is metastatic.  Shouldn't she be removed from this statistic now that she is back in active treatment?  I say yes.  Keeping her in that "five year survival" statistic is a gross misrepresentation of the reality of the numbers.

In fact, I can think of plenty of friends who progressed AFTER the five year mark and I can think of plenty of others who progressed BEFORE the five year mark, hit the magic five years while being treated for metastatic disease and they too, are "five year survivors."

Is the information accurate?  Yes.  Am I thrilled and overjoyed that my friends are here?  You BET.  But some are doing quite well and others are have a very rough time.  Can someone please dig up a few REAL statistics for me?  Namely: those who are NED and those who are in active treatment because their cancer has recurred or progressed.  Better yet, can we lose that five year survival stat completely.  How about, NED at five years?  At six years?  Seven?  How about we quote NED all the way up to ten years?

Personally, I think that statistic needs to be restated to reflect reality because the accurate statistic is painting a distorted picture.  And the distorted picture is fueling this illusion of something that is not real.  Statistical accuracy does not equate to reality of circumstances and quite frankly, I find that to be a bit disillusioning.

And very disingenuous.

Friday, January 25, 2013


I have an idea.

I know EXACTLY who should be addressing the dense breast screening guidelines and I challenge them right here and right now to be the voice of reason.  To take immediate action and come out with some sort of breaking news, in advance of publication initiative.

Remove the government from the equation and determine how to assure that every woman, every where has not only the information, but the specifics of how that information should be ACTED UPON by the medical professionals who understand the big picture.  The whole picture.

I am dense, now what?  Give us answers.  Information without guidance specific to our individual circumstances is either useless information or dangerous information.  Meaningful information so that we are empowered patients... that's what is needed.  NOT a form letter.  And this is the right organization for this job.

ABIM FOUNDATION :   The American Board of Internal Medicine

Their website is jam packed with initiatives and collaboration.  Things like Team-Based Care, Care Coordination, Patient-Centered Care ....  and their newest initiative, Choosing Wisely.

From what I understand, some blog readers may tend to not want to click away.  Read the post and then please DO click away.  Start with the Choosing Wisely Link if only to read the intent of the campaign.  Then, I would suggest Consumer Reports who is partnering on this to make sure the information is available to each of us, in understandable language, so that we can be empowered patients and ask good questions.  And then, for the real science minded, take a look around the ABIM site.

Bottom line:  Every recommendation in each specialty is made using evidence based science.  Repeating for effect: Evidence Based Science.

So far, nine different specialty groups have identified their top five tests, the tests that doctors and patients should look at just a bit more closely before just jumping blindly.  The science isn't there.  For most people, the science isn't there.  These lists are subjective, they are meant to open up conversations.

We must always be mindful that there is never a case where a recommendation will apply to every single person.  Yes, we are all unique and no two circumstances are exactly the same.  The best we can do is understand what is being recommended so we can have meaningful conversations with our clinicians to determine OUR best course of action.  That's being empowered.

Next month, seventeen additional groups will be announcing their top five.  It's like the Oscars.  The groups have been identified.  Their selections will be kept under wraps until the big day.  I need Choosing Wisely with a twist for the Dense Breast Issue.  ABIM.... this is important.  What can you do to help radiologists, clinicians and 40% of the patients who will be told they have dense tissue?  Can you develop a better guideline than what is being done in NYS?  I think you can.

And, I owe you and those who selected the ASCO five a huge apology.  Although I wasn't very public in my blogging, I was fully prepared to head into my oncology appointment in April demanding a tumor marker test.  I was Pissed OFF when I saw that on your list.  I have no other way of screening for breast cancer.  Those markers were giving me a measure of comfort.  And now?  Not so much.

My mom's markers are consistent and have been for the past five years.  They are more stable than mine.  Her's bounce within three points.  Mine can bounce as many as 7 or 8 points.  Hers are also almost ten points LOWER than mine.  My mom was diagnosed with a bone metastasis with extremely low tumor markers.  I see both sides now.  I see why they aren't as reliable as I had hoped.  I see that one size most definitely does not fit all.

I'm sticking with evidence based science and I'm going to do my best to keep my emotions in check.  Might you stem the hysteria that will soon be mounting as those canned letters have likely already hit several mailboxes this week alone.  I sense this "solution" by instituting a law instead of a good medical practice is going to create a problem.  Or many problems.  Because, you see, sometimes, as I was once told by a very wise doctor:

Solutions Create Problems.

Before this solution creates a massive uproar, maybe you can re-solve the problem?

For Mom..... I'm home waiting for someone to come and thaw out the frozen pipe.  I know you are getting your second shot today and I do not for one second like that I am not there.  I love you.

Thursday, January 24, 2013


I want to write an OpEd or a letter to the editor or SOMETHING but I'm not up for the tar and feathers that will follow.  I think I've already established myself as one who isn't afraid to write about things that may not be "popular."  Case in point? Yesterday.  That dense breast law that was signed months ago and went into effect in NYS some time within the past couple of days.

I'm not trying to beat a dead horse as they say.... and that's probably politically incorrect phrase but calm down.. it's a phrase..... not literal.

There was an article in Newsday about the dense breast law and "raising awareness" of its existence.  WHY?  Is it really necessary to raise AWARENESS of a law that will mandate radiologists to sent a canned letter to approximately 40% of the women who will be in their offices for mammographies.  Won't the necessary parties be AWARE upon receipt of the letter. Maybe I'm just tired of the word "aware" ....  For me, the word "awareness" conjures an imagine in my mind.  The image is pink and yes, it's the ribbon.

I am not going to reprint the article because I do not know if I am permitted to do so.  I have access to the article through my DSL provider.  In short, the article cites one activist who was the driving force behind getting this thing signed into law and one politician who took aim at the medical community by claiming they attempted to put up brick walls to stop the law. Obviously, the medical community used straw and wood because someone huffed and puffed and blew that wall down.

There was a quote at the very end from the FDA.  They are early in the process of drafting regulations to address the density issue ..... but no further details can be disclosed at this time.....  The cryptic wording leads me to believe the FDA may actually be the one who infuses common sense into this mess.

I know this is important information.  It's something we need to know.  Yes, it matters.  Not so sure about the need for the crack at my intelligence, "Are you dense?" but I have a sense of humor, so I'm shrugging that one off.  Besides, I'm not dense any longer.  As I already stated, mine are in a medical waste field (or more accurately-in a tissue bank) ....

I sent an email to the journalist who wrote the article seeking some follow up commentary from the medical community, asking for the data to support some of the purported numbers mentioned in the article.

I hope to hear from her.  I cc'd the email to the editor of the paper.  I was respectful.  Hopefully, I will be treated with the same respect and I will receive a real response.

Stay tuned......

Wednesday, January 23, 2013


The new law went into effect on Saturday, January 19th.  Dense breasts.  Mine were.  Now they are in the a medical landfill somewhere.

This may prove to be an unpopular point of view but here goes.

My initial reaction when I saw the legislation and the push to have this enacted in other states?  Great Idea.  We need to know.  My feeling remains the same.  We DO need to know.  The question?  Should the information be dispensed because a law was enacted telling the medical profession how to do its job?  I think not.

I have no doubt there were medical advisors seated at the table as the words were carefully chosen, but the wording is mandated by legislation.  Our state representatives are dictating policy to our doctors regarding our medical care. Something isn't right about the whole process.

We had a conversation about this topic in a mentor session when I was in San Antonio.  I will always listen with an open mind.  My opinionated blogging which began as a source of humor and entertainment, primarily for myself, has now become a forum for real advocacy.  With advocacy comes a responsibility..... to understand things from many sides and then, to choose what I feel is best not only for me, but that which makes logical sense for the larger breast cancer community.

The law makes no sense.  I knew it as I was listening to the doctors on that mentor panel.  I wish my brain could recall what Karuna Jaggar, executive director of Breast Cancer Action stated so eloquently as she voiced her concerns on this very topic.  The LAW is the problem.  The information, on the other hand, makes PERFECT sense.  How should this information be dispensed and by whom...... THAT is what is at issue.  I am certain the answer is not in a form letter, written by politicos, and mailed by a radiologist.

Many of us get our mammographies in a large facility.  In most cases we never get to see or speak to the doctor who actually reviews the images.  A report is then prepared and sent to the doctor who requested the test.  It's been nearly 7 years since I had a routine mammography but as I recall, my gynecologist always wrote me a prescription.  My gynecologist got the report from the radiologist who read the mammography.  I got a letter.  The letter usually said everything was fine and it advised me a report was sent to my doctor.

Until that time it said something else.  Density and calcifications.  Not Dense Breasts but a Density.  I called the radiologist office.  I did not get to speak to him.  I did not get the chance to make a follow up appointment with him.  HE is not my doctor.  HE is the one who knows about this imaging stuff but HE is acting upon instruction from MY doctor.  And therein lies the problem.

Think of the radiologist in the same way you think of the pathologist who looks at biopsies.  You never speak to the pathologist.  You get your pathology information from your doctor (and for what it's worth, there is a blogpost in the making on the importance of great pathologists).  You get your radiology information from your doctor, too.

BUT, we are now getting a letter from the radiologist to notify us if we have "dense breasts"  .... and exactly what does that mean?  Well... you can't actually talk the to doctor who sent that letter.  It must be discussed with the doctor who ordered the test.  And some may not be fully prepared to explain all the nuances of what the imagining means and what further tests may be necessary.

Like everything in medicine, some of us will not need further testing and others might be screened with a code red vigilance.  ALL of us who receive those letters, however, will react and insist upon explanations.  Rightfully so.  What would YOU do if this fell out of an envelope addressed to you:

“Your mammogram shows that your breast tissue is dense. Dense breast tissue is very common and is not abnormal. However, dense breast tissue can make it harder to find cancer on a mammogram and may also be associated with an increased risk of breast cancer. This information about the result of your mammogram is given to you to raise your awareness. Use this information to talk to your doctor about your own risks of breast cancer. At that time, ask your doctor if more screening tests may be useful, based on your risk. A report of your results was sent to your physician.”

We are all pretty savvy in this land of social media, but let's presume for a second, this is what a neighbor sees.  Someone not quite so savvy.  It's more than a bit frightening.  Words jump.  "increased risk of breast cancer"  "raise your awareness"  "more screening tests may be useful"   and suddenly, off to the races......  And therein lies the problem. Should this notification be coming via a government form letter?  I still think not.

From where the doctors sit, this is how some have reacted:

According to a doctor who is the director of breast imaging at a hospital in upstate NY, the problem is many doctors don’t know what to tell their patients about the issue.  

"Most physicians ordering tests are not breast imaging specialists.  They don’t know what to recommend. They have given us a law and a mandate without any guidelines on what to do about the issue.”

And once again, we are faced with a dilemma.  Demands for tests that may or may not be necessary.  Fights with insurance companies who may or may not pay for the tests because there is no science based evidence to warrant those tests.  Sensitive tests throwing off images that may require MORE tests, invasive tests.  And what precipitated all of this? A form letter.  A FORM letter crafted in a government building in Albany.

Wouldn't it make much more sense for the AMA to establish guidelines so that when a mammography is ordered, the doctor provides information (literature or a conversation) about dense breasts.  The doctor, with the patient as a partner, might then mention what an appropriate course of action will be should her mammography find dense breasts.  Not everyone needs to be getting sonograms or MRI's at 30 years of age.  Some do.  Patient centered care.  Patients and doctors in collaboration about what is best for our own unique medical circumstances.  

I want proper care for all.  I expect proper care for all but above all, I expect that care be administered using evidence based science,  from a doctor.

I'm not really fond of receiving a frightful document from a politician who is laying the foundation for his next political campaign.  There are better ways to make this happen.  The government is not the answer for this one, folks.  We are barking up the wrong tree.  We all belong on the bandwagon, but we need to address the correct PATH for the bandwagon. This path?  Government overstepping to practice medicine.....  Hell... I think it's against the law to practice medicine without a license.

In twitter language... #FAIL.

Tuesday, January 22, 2013


Did you read all of Lauren's columns on Friday?

I'm sure some of you might have read them all, some may not have even seen the post.  Fridays can be funny like that....

This is a link to Friday's post:

I realize on some devices the clickable links may not work so if cutting and pasting is necessary......

Do scroll through the posts.

I'm on mental overload and I suspect there's just a tad too happening at the moment.  Today, I SWEAR I am going to remain focused and I'm not doing anything until I've cleared every single thing that I must clear.

I may have finally come to a place of tossing in the towel and discussing medication with one of my doctors.  The "work around solutions" aren't doing me a damn bit of good.

Maybe it's the post holiday let down, maybe it's the knowledge that CMF was shown to be a significant problem after twenty years, maybe I'm just tired.

Enjoy the gift of Lauren's writing.  Tomorrow is another day.

For today:  Nothing.  I got nuthin'

Monday, January 21, 2013


Today we celebrate the life of Dr. Martin Luther King Jr.

When I hear the name Martin Luther King, two phrases very quickly jump into my mind:

The obvious:  "I have a dream."  And the almost equally obvious and here, paraphrased: ".....judge not by the color of one's skin but by the content of their character."

Those words are now 50 years old.

It seems fitting that the overarching theme is about compassion, understanding, agreeing to disagree and mostly, never sitting in judgement of another.  Ever.  For any reason.

Such a simple rule to use as the basis for a life well lived.  And so rarely followed.

We are all different.  It might be our skin color or our politics or our religious beliefs or lack thereof or in the things that stir our individual passions.  It is through our differences that we learn and it is because of our differences that we become stronger.  Together, each with our own points of view, we bring much to the table of life.

How do we harness such tremendous power so that we may find ways to build bridges rather than construct insurmountable walls?

Through empathy, through love, through reaching out to help those who might benefit from something we might have to offer.

Although today is designated as a day of service, it's not about a single day.  It's about every single day. We all have value and we are all capable of contributing something to ease the burden of another.

I challenge all to do something.  For someone.  It can be as simple as picking up a phone or taking your neighbor's trash cans from the curb or knocking on a door just to let a neighbor know you are there.

Think SMALL.  If we all think SMALL and actually DO something, we will make a tremendous impact.  Reach out.  Connect. Follow your heart and trust your conscious to be your guide.  Let your motivation be from a place of genuine care and concern.  Speak out on behalf of those whose voices are not being heard.  Reach out to those who may need help.

It doesn't matter what you do, it just matters that if you can, you do something.  Even if doing something means accepting the help of another.

For the virtual community, check in on someone.  Read a few blogs and see if someone can use a kind word.  Don't be afraid to say it.  A simple "thinking of you" will go far to several people who are going through some very rough times. Yes, right now... there are a few people on the blogroll, on twitter, on Facebook..... struggling.  Let them know they are not alone.

It's all about simply showing up.  Being present in our own lives so that we may be present for others.

I'm present and I may damn well be afraid, but I am fearless.  And so are you.


Comments on this post are closed.....
The spammers found this post and decided they liked it....  Shoot me an email if you want to share something OR..... comment anywhere else...

I see the comments in chronological order....

Friday, January 18, 2013


I'm finishing this week remembering Lauren.  Who?  Lauren Terrazzano.  She was a journalist.  She wrote a column in Newsday which is a Long Island paper.  Lauren had lung cancer.  She was treated at Memorial Sloan Kettering.  She is how I found out about Kites for a Cure.  Her writing transcends lung cancer.  She wrote about the stigma but she also penned articles about the stupid things people say and Lance and Elizabeth and the wig guy whose name I was given when I learned I would need chemo and her husband's devotion as a caregiver and every single column is an excellent read.
I was in and out of every building at Memorial Sloan Kettering from July 18, 2006 when I had my surgical biopsy in Manhattan through October of 2007 when my reconstruction was finally complete.  Lauren's columns began on September 5, 2006.  She died on May 16th, 2007.  I promise you will not be sorry if you take the weekend and read every single one of these columns.
This is an article written about Lauren in USA Today on April 22 shortly before her death.  An obituary appeared in the Boston Globe.  
I think her writing had such a tremendous impact on me because I was LIVING what she was writing and I was living it in real time.  I could relate.  It didn't matter that I had an early stage breast cancer and Lauren had a recurrent lung cancer. Cancer is cancer.  Except we know for many, it's not.  Lung cancer....  definitely not the good cancer and definitely the "you did this to yourself" cancer.
I cried the morning of May 17, 2007 when I picked up Newsday and brought it inside.  And I saved the paper. Lauren humanizes lung cancer.  I think of her often. I think of her as my friend even though I have no connection to her whatsoever.  I just learned her father wrote a book which was released in October.  It's downloading to my iPad as I type.  Life, With Cancer
THIS is the face of lung cancer.  This is a voice I miss and one that was silenced far too soon.  This is why we MUST join forces so the day DOES come when there is #NoStigma. 

Thursday, January 17, 2013


I want to encourage everyone to read yesterday's post if you haven't already done so....And even if you DID... please go read the comment written by karen.  Right now, it's at the bottom unless other comments were left after I posted this.  She speaks that which she witnessed as a hospice nurse.  karen is always eloquent.  This time, it's eloquence packing a fierce punch.  Go.  Read.  Now.  

Done?  OK.....  Here are links to different organizations where you may find some additional information. They are clickable but if the click doesn't work, cut and paste.  This is important stuff.  

We tend to fear what we don't understand.  At least I know I do.  And sometimes, fear can be expressed in negative ways, like transferring judgement.  So click around, share with others, let's give this some momentum so we can take those first steps toward #NoStigma

Uniting Against Lung Cancer Fact Sheets

The Bonnie J Addario Lung Cancer Foundation (Bonnie spoke on a panel at Partnering for Cures-she's a force, a powerhouse)


Lung Cancer Research Foundation

Lung Cancer Alliance

National Lung Cancer Partnership

It might have been good if I clicked on that last one first.... It's got all of the organizations listed (and there are more that I have not listed because it seemed silly after seeing the nice job done by the National Lung Cancer Partnership)

My observations.  Had I googled "breast cancer organizations" I'd still be sitting here next month adding links.  Also noteworthy, I didn't do a thorough examination of these organizations but I get a sense there is nothing "obnoxious" about the way any of these groups are conducting themselves.  They appear to all be on the same page.

I am haunted by the words of my oncologist when I learned about my dad's diagnosis just three rounds into my own chemotherapy.

"Please try to remember that lung cancer is not breast cancer, AnneMarie.  The treatment situation is very different."

We can't see the change if we aren't willing to be the change.

Wednesday, January 16, 2013


I'm departing a bit from breast cancer, chemobrain, metastatic disease, research, ranting and raving.  I'm reaching across the aisle.  I've referred to breast cancer as the bully of all cancers and it's something that troubles me.

For starters, my very dearest friend in the whole wide world has a very, very rare form of thyroid cancer.  I wrote about her and her medullary thyroid cancer when this blog was just weeks old.  When she was diagnosed, just two months before something was going wrong in my left breast, I remember springing into action to figure out where in the world they were doing research on medullary thyroid cancer.  There's no glory in finding a breakthrough for a cancer that is diagnosed in about 450 people per year.  Pisses me off because it just does, but there is an element of understanding.

On the other end of the spectrum, lung cancer.  Nearly a quarter of a million Americans are diagnosed with lung cancer each year.  There's no glory in finding a breakthrough for a cancer that is so stigmatized, THE cancer which is the poster child of "blame the patient" for their diagnosis.  Pisses Me OFF.

My grandfather died of lung cancer in 1966.  He was 55 years old.  My dad was diagnosed with an early stage lung cancer in November of 2006 right after I began chemotherapy for my breast cancer.  He died in July of 2007, days after his 71st birthday.  It was not from the lung cancer but it was the lung cancer that began to topple a series of dominoes leading up to his untimely and unexpected death.  Don't even bother asking me if either of them smoked.  It's not the point.

What IS the point?  Lung cancer will kill more about 160,000 people this year.  That is more than colon, breast and pancreatic cancer COMBINED.  Lung cancer kills more women each year than breast cancer.  (Heart disease is the number one killer of women.)  Where is the awareness?  Where is the ribbon?  Where is the compassion?  Where is the empathy? Where is the research?

We do not like be "blamed" for our breast cancer diagnoses.  Why is it okay to lay blame at the feet of those diagnosed with lung cancer?  Why is the very first question asked, "Do you smoke?" and if that answer is no, the very next question is, "Did you smoke?"  WHAT difference does that make??  If you must know, about 40,000 of those diagnosed with lung cancer each year are "never-smokers."  All are stigmatized, treated with that haughty, self- righteous, "you brought this on yourself" attitude by many of us.

I implore all to find their compassion and lose the judgement.  The statistics are startling.  There are no effective screening tools to detect lung cancer at its earliest stage.  Five year survival rate?  16%  .....  While breast cancer is funded by the government at over $21,000 per death, lung cancer?  Less than $1,500.00 per death.

I'm playing the numbers NOT the underlying reasons.  These are lives and every life matters.  What brings this on?  For starters, I was having a twitversation with a couple of young women who are not only upset over the disease, but equally upset over the stigma.  In the midst of the conversation, this appeared on my screen:

That was a pretty big deal.  Dr. Otis Brawley is the Chief Medical Officer for the American Cancer Society.  He's also very big on evidence based medicine and "show me the data."  I'm all about medical decisions based upon science, proven science.  And I'm all about saving lives.  All lives, as many lives as possible.

So friends, I ask you to think before going down the blame path.  Take a look at what they are doing at Uniting Against Lung Cancer.  In May of 2007, we sponsored a kite in honor of my dad at their inaugural, signature event:  Kites For A Cure.  If that sounds remotely familiar, it's the "for a cure" part that caused a dust-up but in the spirit of not going "there" I'm not going there.

Let's just stick to good will.  No stigma, no blame.  Do you know the color of the lung cancer ribbon?  I'll bet more don't than do.  It's clear.  It's powerfully significant.  Invisible.  We are at the top of the visibility chain.  Let's share it with others.  They need our help.

I told Dr. Brawley I'd jump in to try to see what might be done to remove the stigma and I told him I'd get some of you to join me.  No action is necessary, just a change in mindset.  And a couple of retweets if you are on twitter.  I just registered a new hashtag: #NoStigma.  It's a start......

Tuesday, January 15, 2013


This Thursday, January 17th, The Texas A&M Health Science Center College of Medicine is hosting a public lecture which will be streamed live via their Facebook page.  Questions may be submitted in advance of the event OR during the talk so if you have a chemobrain like me and fear you will forget your question, follow that link and add the question now.  BEFORE you forget!  As an aside, the recorded video will be available on their You Tube channel.  In other words, even if you are not able to attend live, don't let that stop you from adding your questions or concerns.  I will be sure to provide the link as soon as it's posted.

The live stream is a first for them and they are hoping this will turn into a no-holds barred conversation and it's a topic that is of interest to many of us.  Dr. A. Nelson Avery will be discussing how cancer screening guidelines are developed, who plays roles in the development of the guidelines and how the health and well being of those who benefit from the screenings may be affected.  Is cost a factor?  Are we (not really "we" but "THEY") willing to sacrifice a couple of lives to save a few dollars?  Who is behind the decisions and are they medically sound?

The credentials Dr. Avery is bringing to the discussion can be found here.  The specifics about the topic can be found here

I have a horse in this race.  In fact, I have several.  And I have an ax to grind, too.  I've seen a couple of my metastatic friends chatting on their Facebook pages about "waiting for approval" for PET scans.  Or, "the PET scan was denied as unnecessary because the insurance company says the CT is sufficient."

If the technology is available, especially for those living with metastatic disease, to get excellent imaging and quite possibly a better feel for what is happening, I get enraged that the tests are being delayed or denied.  Lives are hanging on the edge of someone's pen sitting in a pile of scan requests?  UNacceptable.  Waiting for one more hour than necessary angers me.  Having someone making decisions using the equivalent of actuary charts PISSES ME OFF.

All lives matter. Every single life matters.  And care should be determined by the treatment team with the patient as an active participant.  No one else's agenda should play into these decisions.  Is the test medically sound?  Does the doctor, YOUR doctor, believe it's the best course of action?  Fine.  Game over.  No one else gets to throw their weight around. Except, that's not the reality.  That's the "Dream On" version of the program.

Here's my gripe, or more accurately, ONE of my gripes.  I know that my mom's metastasis was found using a PET/CT combination scan which I shared recently on this blog.  That was approved.  It is also cutting edge.  According to what I heard during her visit on Friday, when her three month scans are ordered, it's entirely possible a PET scan will not be authorized.  The oncologist already indicated if they won't approve a PET scan, he will proceed with a bone scan and it will be fine.

HUH?  My question?  Will it really be fine or is this just a less expensive test that may not pick up some of the more subtle nuances that may help guide the treatment decisions of our oncologist.  If our very excellent oncologist is doing what he does, quite excellently with a difficult diagnosis, is anyone tying one hand behind his back?  If so, who IS that person because I'm prepared to raise the roof and bang on doors if I get ANY sense that is what is happening.

I will be damned if I'm going to allow some unknown person sitting at a desk five states away read a chart and make a decision.  You are five states away and you are NOT part of the treatment team.  Step out of your office and show me your face.  Me, my mom, my friends... we are not "cases" on the paperwork being reviewed by a total stranger whose sole concern is the bottom line.  We are people, in need of routine screening for preventative measures and some are in need of screening to ascertain treatment protocols are working.

If you have questions you would like to see discussed, feel free to leave them in a comment here and I will pass them along to Dr. Avery and his team.   

For my non-clickers....  This is what Dr. Avery hopes to share with us:

Each year, around 350,000 people are diagnosed with breast, cervical, or colorectal cancer in the U.S., and nearly 100,000 die from these diseases. Trials show that early detection can reduce mortality rates. What could be wrong with screening, especially if it can detect a life threatening condition at an earlier stage? Why recommend against screening unless the concern is cost? Are lives lost to save money? What are the real reasons that guidelines set limits on screening? We’ll discuss how cancer screening guidelines are developed in the U.S., why there is disagreement on some of them, and their impact on healthcare delivery.

Interestingly enough, as I found out about this lecture, THIS hit my news feed via Medscape.  Although the wording says "risk" isn't worth the benefit, I'm left wondering if they really meant to say the benefit isn't worth the cost.  And frankly, that's UNacceptable.

From  Medscape, an impossibly annoying mess of numbers.  The emphasis on ONE death not being good enough, go tell that to the grieving family and then, get back to me with the nonsense about harms outweighing benefits.  Sounds like a convenient excuse to refuse a test.  And yes, some things are just that simple.  And things like this should not be guiding anyone's treatment options or precluding them from a test their doctor feels is the right course of action.  Whomever is behind this, kindly step the hell aside.  YOU are standing in the way of progress.


Screening for breast and colorectal cancer should be targeted at individuals who have a life expectancy greater than 10 years. Otherwise, the harms may outweigh the benefits of screening, according to a study published online January 8 in BMJ.
This conclusion comes from a meta-analysis of survival data from Denmark, Sweden, the United Kingdom, and the United States conducted by Sei J. Lee, MD, assistant professor of medicine at the University of California, San Francisco, and colleagues.
The researchers found that in populations primarily older than 50 years, it took an average of 4.8 years to prevent 1 death from colorectal cancer in 5000 people undergoing of fecal occult blood test screening.
This suggests that the harms of screening outweigh the benefits for most people with a life expectancy of less than 5 years. In addition, it would take 10.3 years to prevent 1 death from colorectal cancer for every 1000 patients screened, which indicates that for most people with a life expectancy greater than 10 years, the benefits likely outweigh the harms.
Results were similar for breast cancer. It took 3.0 years before 1 death from breast cancer was prevented in 5000 women screened with mammography, and 10.7 years before 1 death was prevented in 1000 women screened.
"Therefore, patients with a life expectancy greater than 10 years should be encouraged to undergo screening for colorectal cancer and breast cancer," the researchers write. "Conversely, patients whose life expectancy is less than 3 to 5 years (that is, less than the time lag to an absolute risk reduction of 1 in 5000) probably should be discouraged from screening, since the potential risks probably outweigh the small probability of benefit," they explain.
However, they caution that these results should not be used to deny screening for people with a limited life expectancy. "Rather, our results should inform individualized decision making, which aims to account for patient preferences and values while maximizing benefits and minimizing risks," Dr. Lee and colleagues note.
Defining the Time Lag
The researchers analyzed the results of 5 breast and 4 colorectal cancer screening trials with populations predominantly older than 50 years. All were population-based randomized controlled trials that compared screened with unscreened populations. All of the studies were identified as high quality by the Cochrane Collaboration and the US Preventive Services Task Force.
The primary end point was the time to death from breast or colorectal cancer in screened and unscreened populations. The studies used fecal occult blood testing for colorectal cancer screening and mammography for breast cancer screening.
The researchers note that screening for these 2 cancers can find asymptomatic cancer at an early stage, which, if not treated, can cause symptoms or even death years later. Therefore, screening has a "time lag to benefit" — from the screening date, when the person is exposed to the potential risks of screening, to the point when benefits can be observed in clinical trials.
However, it remains unclear just how long a person needs to live to potentially derive a survival benefit from screening. Randomized controlled trials of screening tend to focus on the magnitude of benefit, rather than when those benefits actually occur, the researchers explain, which has led to differences in recommendations about the time lag to benefit.
To determine the screening time lag to benefit, the researchers calculated the number of years needed to reach different thresholds of benefit, using the absolute risk reduction in cancer-specific mortality. These absolute risk reductions ranged from preventing 1 cancer death per 10,000 people screened to preventing 1 cancer death per 500 people screened.
They found that mortality benefits varied in the studies, but that the benefit in colorectal cancer mortality rose steadily with longer follow-up periods; at 15 years, 23 colorectal cancer deaths were prevented for 10,000 people screened.
This was also true for breast cancer screening; at 15 years, the benefit of mammography increased to 19 deaths prevented for 10,000 women screened.
They note serious harms in 3 in 10,000 people screened for colorectal cancer and in 1 in 1000 screened for breast cancer. Therefore, an absolute risk reduction of 1 in 1000 is probably a reasonable threshold at which the potential benefit will likely outweigh the potential risk in most people.