IN HELPING OURSELVES -- WE HELP OTHERS

It was not my intention to have three consecutive posts with embedded videos but I suppose if I harken back to some of my earliest entries, I recall cracking jokes about things happening in threes.  In keeping with that theme, or in other words, The Beat Goes On....... you will find a video at the bottom of this post.

When I was in Washington for NBCC Advocacy Summit, in one of those serendipitous "life episodes" I received an invitation for a luncheon being held by the Cancer Support Community.  You know how the saying goes, "timing is everything?"  In this case, not only was the timing perfect, the location was ideal.  I was already scheduled to be in the very building where this luncheon was being held.  The topic was perfect.  

"Meeting The Needs of The Whole Patient in Cancer Care"

In addition to an outstanding panel of speakers and visits from a number of congressional representatives, it was a delight to meet the president and CEO of CSC, Kim Thiboldeaux, whose passion for her work is immediately obvious from that first second you meet her.  She was at the door personally greeting each of us as we arrived.  Every speaker was exceptional but no one touched me more than Janice Paul, an ovarian cancer survivor whose story had me blinking back tears and swallowing that lump in my throat more than once during her time at the podium.

I'm not sure I understand when OR how I've morphed into a bundle of blubbering emotions, but most definitely, I have.  It certainly seems as though I've shed far more tears in the years post active treatment than I did in the months prior.  With the exception of the day I got that letter when I wailed like a baby for two solid hours, I don't remember shedding many tears in the months leading up to my diagnosis, the day of my diagnosis, the night before my surgery, the morning after my surgery, two days before chemo when I went to get a haircut (figured the next time I'd be doing anything with my hair it would involve a buzzer--which, for what it's worth did NOT happen as I did NOT lose my hair because I had That Fraud Chemo.... Kept my hair, Lost my brain, but the hair, oh the hair... that was of primary importance).

I suppose when I was actually In Those Moments, it was necessary for me to shelve my emotions so I could be an empowered patient.  It was important for me to be present.  I simply had to allow my brain to rule the situation.  My heart had no place in this maze.  I couldn't make decisions clouded by emotions.  I know I'm good in a crisis.  Mine or someone else's..... it's after the crisis that I reflect back and just fall to pieces.  And when I say fall to pieces, I'm talking walking around completely dazed, unable to function, almost catatonic.  No kidding.  Crisis fallout.  Perhaps also known as Post Traumatic Stress Disorder?

I'm five years post chemotherapy.  My gummies just celebrated their fifth birthday nestled inside my body where my breasts once were.  My ovaries are in a medical waste landfill somewhere.  My brain makes a guest appearance every so often.  This can be more than a bit troubling most of the time.  Sometimes, however, I'm pleasantly surprised.  On occasion, I'm elated.  The elation is usually the result of something I COMPLETELY forgot about......

This falls under the elation category.  I tend to get lost on the internet.  I follow one link to the next and sometimes, I crash into something great.  This is great.  Why?  For starters, it's the Cabbage Patch Doll syndrome.  Too young?  OK.  It's Tickle Me Elmo.  Still don't get it?  OK. O.KAY.  I like being in on the ground floor.  And, apparently, I was one of the 1043 initial participants in The Breast Cancer M.A.P. Project.  Mind Affects the Physical.  This past October, the inaugural report was published.

This is an ongoing project and it's one that I am encouraging anyone who is willing to share their experience to do so by joining the registry.  This initiative is listed in ClinicalTrials.gov  and it's also included on BreastCancerTrials.org in section on their site dedicated to web based studies.  In other words, it's not just some group looking for random information. Cancer Support Community has enlisted some of the brightest minds to find the best possible ways to support us.  All of us, the breast cancer club hoppers.

Poke around the website.  There's lots of information and there are plenty of ways to seek support.  There are online groups in addition to discussion boards.  I participate in a weekly session which lasts 90 minutes.  My group is not exclusive to breast cancer.  It's facilitated by a social worker who is spectacular.  They are doing some great things at CSC and WE can help make it better.

How?

Join the registry.  These words, straight from that inaugural report, let's just cue the emotions.  My answers helped provide the first glimpse into the minds, hearts and souls of what it means to have breast cancer, to live with breast cancer and to fly without a net when active treatment is complete if we are fortunate enough to exist in the land of NED.

Be a part of something so much larger than yourself......  This is WHO you are when you choose to participate....... This is HOW you are viewed by those who realize Cancer Ain't Easy and it sure Ain't for the Faint of Heart.  

"This project, the first of its kind, is a collection of more than 1,000 survivor voices who shared their deeply personal emotional, physical and social experiences with breast cancer . These survivors are setting the framework for better care by arming researchers, policy makers, advocates and others in the cancer community with insights into the impact of breast cancer from diagnosis throughout the survivorship continuum . We owe an enormous debt of gratitude to these registry members who summoned the courage, commitment and candor to answer our call-to-action and share insights that have the potential to change the course of breast cancer survivorship."

Before I roll tape here...... Just want to mention if you are in the Chicago area, stop by Gilda's Club on May 31st and meet Kim at the CSC book launch, "Reclaiming Your Life After Diagnosis" (and no, this is not a paid advertisement!!!!  Nor was it coerced.... although, I'm guessing if you are a regular reader of this blog, you might already suspect I can't be bought.... Either I believe something is great... or not... and I do think Kim is dynamic.  And I love what they are doing at Cancer Support Community...... So that no one faces cancer alone 

The video may take you to the You Tube page.  Or, it may not work at all... In case.....This is the You Tube Link.  FYI, I love the voice of the singer..... and I really do love the song, too.

SNARK --- ITALIAN STYLE .....

I am delighted to share some snark from the other side of the Atlantic.  Below, is a post written by a new Italian friend. We "met" on twitter.  She posted a You Tube video.  I saw it and I responded.  We began communicating.  Her English is impeccable.  My Italian is NOT.  In our first email, I knew she would fit right in!

"I'm against the pink crap as well as you and I'd like to promote a new approach to research whose agenda should be dictated by women and researchers at the same time.......  Are you in touch with the people of "Pink Ribbons Inc?"  It would be great to bring it to Europe.  There's a great, cold silence here and I've decided to break it!"

Grazia (Grace) is presently 32 years old.  She's Italian and currently lives in the UK.  She was 30 years old when she was diagnosed with breast cancer in November of 2010.  She writes.  The piece below can be found online here.  Grazia was kind enough to translate it into English to be reprinted here for all of us.

The You Tube promotional video is at the bottom of the post.  Even though it is in Italian, as they say, a picture is worth a thousand words.  Trust me, you'll get the picture.

Without further adieu, here's Grazia in her own words with very few grammatical adjustments from me.  I didn't want to lose the snark......

GOT BREAST CANCER??  SWEEP IT AWAY WITH VILEDA.

 Got breast cancer? Are you a woman? You are at risk to get the disease considering that nowadays in Italy one in eight women will develop the disease throughout her lifetime? Vileda (O Cedar in the US) has what you need! Yes, you’ve got it right!  Vileda, the mop company. Today, in they year 2012, if you buy bucket, brush and mop, all in pink for the occasion, you support cancer research. What research? The research funded by Susan G. Komen Italy, the first European affiliate of the more reknowned US organization Susan G Komen for the Cure. The latter has recently been in the eye of the storm.  In order to promote its campaign against breast cancer, Komen is not ashamed to accept the sponsorship of fast food chains or  the food and cosmetic industry, even those whose products contain chemicals suspected to be related to breast cancer. The “cause”, the so called pink-ribbon culture promoted by Komen, is receiving increasingly strong criticism from many people.  There are now thousands of products sold not only in the US, but also in Europe and in Italy getting restyled to promote the “battle” against breast cancer. All the products turn pink, the colour symbolizing feminity, at least in the Western world, pink... representing a tamed female who is not expected to ask too many questions. Questions like:

“Why are the cases of breast cancer growing?” 

“Why are a growing number of young women getting the disease?”

“Why, after decades of research, we still do not know the causes of breast cancer?”

Since February 2000, Komen is in Italy too and every year it organizes the “Race for the Cure”, whose aim – as one can read on the website – is to “express solidarity among women faced with breast cancer and to raise public awareness on the importance of prevention”. The race(s), however, are an occasion for promoting various goods to women, the manufacturers of which support the event. This year Vileda is among the sponsors and introduced its “Pink Collection” which includes Super Mocho 3 Action, the gloves Sensitive, the brush viStyle and the cotton and microfiber mop. All strictly pink. All strictly for women, whether or not they have breast cancer, women who will be happy to buy and use them to keep their houses clean– the place whose domain has been assigned to them by nature –.  And even if they DO get breast cancer, they will not feel lonely. To keep them company there will be millions of other women currently developing the disease in increasing numbers in Italy and in the world, there will be Komen who will give them the opportunity to join a race once a year. Oh yes, there will be the pink Super Mocho 3 Action, their faithful ally, that, like a magic wand, will fight breast cancer off forever. And they all lived happily ever after.

As I was finishing up this piece to post, I received an email from Grazia..... It said:

"Komen Italia has banned me from its Facebook page. I cannot post on their wall. This is because of the article, but also because of a post I wrote on the wall of Rosanna Banfi, an Italian TV actress who got breast cancer and is now a spokesperson for Komen. Some women agreed with what I wrote. The actress has not banned me so far."

It brings Grazia's own words alive in describing the use of pink as a representation of a "tamed female who is not expected to ask too many questions."  I loved that line in the post and didn't want to add commentary but then I got this email.  And it fits.  

AND NOW..... LET'S ROLL THE TAPE....

Apparently, in Italy, it's either sex or it's cleaning.  (Chill before you yell, I'm ITALIAN AMERICAN and this is not entirely inaccurate....)  Unless you are someone like Grazia, making noise, looking to change things.....   Just one question:  Can someone shed some light on the nun and the priest?  I'm not sure I get that.

Race for the Cure, Rome.  This Sunday.  Bari, Next Sunday.  The remaining two, just in time for Pinktober.  I wonder if they will get the Pope to turn the Vatican pink?  Perhaps the cardinals can be flamingos for a month??  Just throwin out a few suggestions...... Anyone up for a friendly wager?


Final thought.... Be sure to check out Barbara Brenner's blog.  She was the head of Breast Cancer Action and remains VERY outspoken and exceptionally eloquent.  She has what I'd like to call a "starring role" in Pink Ribbons Inc!

The CYA portion of the blog including a link to the Vileda page .....

Here's Vileda via Google Translate.

Sustainability in the post, we mentioned our partnership with Susan G. Komen Italy. It's time to give some more details.

Komen Italy is a non-profit volunteer-based, active since 2000 in fighting breast cancer. This is the first European affiliate of the "Susan G. Komen for the Cure "in Dallas, the largest institution in the world active in this field for 30 years. Komen is committed to spreading the "Pink Ribbon", the universal symbol of the fight against breast cancer, its activities are: prevention, early detection, help women who face the disease, improve quality of care and support new projects through fundraising.

Support important activities, such as Komen, reflects our policy of sustainability, we are sensitive to these issues and, therefore, we initiated a multi-year partnership to support the initiatives of the association. From this partnership was born "Project Pink" initiative, which aims to raise awareness on the prevention and raise funds for the fight against cancer.

Of this project are part of the product "Pink Line", distinguished by color and by the special Komen ribbon:

• Sensitive Gloves: Gloves are ideal for the most delicate because they offer the highest sensitivity on palm;

• Broom ViStyle: the broom multifunction "Three is" for 3 utlizzi different. Made with 80% recycled material.

Choose Pink Line products is to make a choice in favor of women.

Soon will start the 2012 edition of the Race for the Cure. We'll provide all the details below to find out how to attend the event.
 
And an apparent press release, also via Google Translate....
May

Race for the Cure 2012: Run with us against breast cancer!
Our partnership with Komen Italy does not stop at the line of products Rosa, but continues with participation in Race for the Cure, an event organized by the Susan G. Komen Italy consisting of a run of 5 km, to demonstrate solidarity with the women who face breast cancer and raise awareness on the importance of prevention.

The event, open to all, is characterized by the presence of "Ladies in Pink", women who have personally dealt with breast cancer and to demonstrate the positive way of dealing with the illness, deliberately choose to become visible when wearing a shirt and a pink hat.

The first Race for the Cure was organized in 1982 in the United States, and since then the event involves millions of people in different cities around the world. In Italy, the first race was held in Rome in 2000 and, given the enormous success, the event was staged in other Italian cities.

This year, consists of a three-day health, wellness and sport, culminating in the famous race and walk Sunday morning. Here is the schedule of the four stages of 2012:

• From 18 to 20 May in Rome

• From May 25 to 27 in Bari

• From 28 to 30 September in Bologna

• From 5 to 7 October in Naples

For more information and to register, vai www.raceforthecure.it the site, select the menu "The Race for the Cure", choose one of the stages and, after entering the page, click on "Subscribe" button.


In addition to the race of Rome, we are planning to involve all our Facebook fan page Vileda: You can, in fact, join groups as a real team. For this, we would like to collect all our fans in one mega team and race together against breast cancer!

Want to join us? Then go to www.facebook.com / ViledaItalia and put "like". You will be with the other, an event that combines sport, fun, emotion and social commitment, and support us with Komen in its activities in favor of women. We count on you!

LOVE LEVELS THE FIELD - WE ARE ALL EQUAL

She's witty.  She's brilliant.  She's determined. She gets it.  And most importantly?  She RANTS (by her own admission!).

This video is a talk given by Dr. Susan Love.  Excellent points are made about how WE are part of a team.    We, as patients, have good ideas.  We can be active research participants.  We can and should be part of the collaborative effort.

I ranted enough yesterday...... In fact, I ranted myself right into an eye twitch.  Have you any idea how difficult it is to read or write with a twitchy eye?  I've wanted to share this video since it hit Dr. Love's Facebook page.  No time like the present.  Besides, she deserves an audience today.  Yesterday, Army of Women closed out another study.  Researcher has all the necessary participants.  If we work together, we can get things done.

Speaking of which...if you missed Monday's post, please take a peek.  It's too late to vote for METAvivor so the beginning of the post is no longer relevant but it's not too late to sign the petition or to encourage your representative to sign the bill to Accelerate the End of Breast Cancer.  Deadline 2020.  All of this will take about two minutes of your time.  It's important.  And I'll tweet out to anyone whose representative is missing from the list.  I had success with that one last signature from NYS and I'm happy to report, New York now has 100% support.  I'm not taking credit for that last signature but it wasn't there before I hit that twitter feed and then, it was.  You can decide.......

And one last thing..... If you live in the San Francisco area, Breast Cancer Action is screening Pink Ribbons Inc on May 31st. Here's the trailer.....  for those who think I'm too pissed off about pink..... have a listen... Then, come talk to me....





And now, rounding out the day in videos, Dr. Susan Love (who is in that trailer for PRI) educating an audience and as she said on Facebook....
"My rant regarding how researchers think of patients as "other" to be studied rather than collaborators with good ideas!"   -- Dr. Susan Love

GREAT IDEA - LET'S BLAME THE DEAD WOMAN

I SWORE I was not going to turn this blog into any sort of political forum ..... BUT.....  Sorry, I MUST rant.  It's going to be a short rant...... because there are only a few points I think I have to get off my now surgically altered chest.  I think it will be short.  Generally, when I say I'm going to be brief, I scroll up and the post is about 25,000 words or more.  

Here Goes.

I have a daughter.  I have breast cancer.  I am presently NED.  I do NOT have metastatic disease so I can not, WILL NOT presume to understand what it feels like to have that sword of Damocles hanging over one’s head.  I will just say that I have, in my innermost circle, friends who are living with mets.  Therefore, I speak as a woman in general, as a woman with (NED) breast cancer, as the former wife of my children’s father, as the wife still trying to define the word wife in my present “situation,” as a daughter of a mom with two breast cancer diagnoses, as a mom of a daughter whose future I hope to help by my efforts to End Breast Cancer.  Mainly, I speak as a Bitch Blogger.  But most of all, I speak as a very proud and VERY #FearlessFriend.

I am troubled.

I will state my case with one caveat.  I have only read the sound bites and the headlines.  The reason?  The truth speaks for itself.  Cloaked in bullshit about what monies were used, whether the dead woman was a raging lunatic bitch (always a great tool, by the way, let's attack the dead person), how much he "loved" her, I am prepared to stick my nose in someone else's business.  On behalf of the dead woman.  Because it's public information.  I hope my twitter buddy @SusanKomenGhost will have PLENTY to tweet about.

John Edwards is pond scum.  I want to smack that smirk right off of his perfectly crafted face.  I may even want to smash his perfectly coiffed head off of his mightier than thou shoulders.  I don’t care if he hated Elizabeth.  That’s his right as a human being.  I don’t care if he never wanted to see her again.  Again that is HIS right.  All I’m saying and this is the ONLY thing I am saying, there are ways…. And then, there are the.other.ways.  You chose the latter, dearest John and quite frankly, That Sucks.

This need, as I originally heard from a friend’s husband (although now I’d venture to say the “playing field” is level so I’m NOT man bashing… I LOVE men…. I’m bashing A man, One man, For not BEING A MAN)…. This need to Deny.Deny.Deny. has simply got to stop.  How’s about this for a novel approach?  Truth.  Honesty. Integrity.  And mostly, Don’t make your wife who is in the throes of a TERMINAL illness look like a fool.  Just Don’t Do It.

Here are my suggestions.  I’m prepared for someone to anonymously tell me I’m a moron because, as I’ve made clear, I will accept anonymous comments.  I will not delete them unless they are over the top egregious.  I WILL delete them if they are political or religious.  That’s not what this blog is all about.  I don’t want to muddy the waters with political debate or religious views.  I just want to stay on point.  The point, of course, being breast cancer and how to fix a big giant pink overfunded, progression-less disease.  Yes, simplistic.  And yes, for me, for this blog space, it is that simple.  I am, despite my ADD, OCD and every other alphabetical disorder in my chemobrain, staying on point.  Except if I’m not.  My blog, my sandbox, my rules.

Commentary is directed at the offending party.  If anyone has a compelling argument to enlighten me so I might even consider why I should feel differently, DO share.  I will listen to any and all points of view.  I get it.  Shit happens.  You find yourself in a situation and you mess up.  You are in a marriage or a committed relationship.  Those are supposed to be built upon a foundation of honesty and trust.  But, something happened.  A random act of something.  We can debate the pros and cons of the need to share those assignations with our partners but that is not what happened with Mr. Edwards.  (Do I even afford someone with a yuk factor of a gazillion the respect of referring to him as Mister anything?)

It wasn’t random.  It wasn’t one time.  It wasn’t ongoing randomness with many random partners.  It wasn’t ongoing randomness with the same someone whereby they were just having fun for fun’s sake.  I am NOT endorsing any of this behavior.  I’m merely pointing out that like most things in life, there are things that are horrible and in some cases there are levels of their horrible-ness.

What was done in this case is as close to the top as I can imagine.  Maybe I’m just hypersensitive.  Maybe it’s because I watched Elizabeth Edwards announce her cancer had metastasized while John looked on lovingly and adoringly as he pledged his (politically necessary) unwavering support for his wife as she set foot in the land of mets.  I’m betting that is driving my outrage.  I subscribe to a way of being when it comes to wo(men) with breast cancer: What happens to one of us, happens to each of us on one level or another.  That’s my way of being an effective #FearlessFriend.  Empathizing.  In every situation.

And so let me say this.

Did you REALLY think you would be able to hide this?  I mean Come ON.  The only secret is a secret where only ONE person knows the secret.  The minute the other woman was in that bed, it wasn’t a secret.  Ask Monica.  Or Bill.  Or Elliot.  Better yet.  Yank out a copy of City Slickers and heed the advice of Billy Crystal.  The shit literally falls out of the sky.  Into the laps of unsuspecting wives.  Usually in the beauty parlor.  And usually, we already have a hunch.  We are pretty good like that.  And we just keep going to the beauty parlor (or in 2012, perhaps the nail salon) and one day, our hunch is confirmed.

No matter how sure we may be of our "hunch," that moment of absolute confirmation is sheer and utter devastation.  That’s not me being empathetic.  That’s sympathetic and let’s just leave it at that, shall we?  Now let’s add to the pile.  Elizabeth Edwards buried a child.  That’s a place my mind can’t even go.  Not even in my darkest moments.  Elizabeth Edwards had “two families” in the sense that there were older kids and then, there are two younger children.  A bit out of the ordinary but now, faced with a distant recurrence, not only is she reeling for herself, she surely is distraught over the fact there are little ones in the equation.  Degrees of awfulness.  Again, I won’t ever presume to understand what those who have young children feel like when diagnosed or going through treatment.  I can only hand hold.  I do NOT understand.  I’ve not walked that path.

He’s a public figure.  He’s in a presidential race.  It doesn’t get more public than that.  Fast forward.  The campaign is over (for him, at least).  The buzz is in the air.  News of an affair begins to surface.  And then, a love child?  She’s being treated for TERMINAL breast cancer. How much more shit shall we pile upon this woman?  Her son’s death, her breast cancer, the fact that it spread.  All well beyond her control.  Her husband’s actions?  Also well beyond her control.  But, NOT BEYOND HIS.  And this is where John Edwards should have manned up.

Dude.  Tell the woman there is someone else.  Tell the woman you no longer want to be married.  Tell the woman you want to be with said other woman.  Tell her there is a child.  Don’t DON’T DO NOT sit in front of a news camera doing the DENY DENY DENY thing.  You disgraced your wife who really had an overflowing plate of shit being crammed down her throat.  You couldn’t make the plate smaller but for the love of everything, you most assuredly did NOT have to heap on another helping of shit atop this massive pile.

As for his daughter who is scheduled to testify on her father’s behalf which is what brought me to this place, this rant, this day?  If the pundits are right, the expectation is that she will be sharing her knowledge of her father’s love for her mother.  I have a son.  And a daughter.  They are both adults with the free will to speak their minds.  (I hope I have your attention for these next sentences or the end of this will make absolutely no sense.....)  My kids have carte blanche in the “take it out on mom” column for pretty much anything.  They also have, for the most part, a blank check pre-signed by me to forgive whatever they decided to use from that other column.  

This young woman’s terminally ill mom was disrespected (I’m inclined to use the word degraded but I might be accused of melodrama) in THE most public fashion. For me, those actions resulted in what I’d call the absolute epitome of humiliation.  Kicked when she was down?  That doesn’t really scratch the surface when you break this mess down, line item by line item.

The daughter of Elizabeth Edwards is obviously a wonderful young woman.  She is caring for her two younger siblings.  She watched her mom die what was surely an unpleasant death.  Her dad is now facing some rather serious charges for which he might be imprisoned for a long time.  Say he is a great dad.  Say he is wonderful in the community.  Tell the world how much YOU love him.  Share your stories of your relationship with him.  Humanize him for us because most of US have fairly strong feelings and I’m going out on a limb here.  Most of us do not feel anything in the warm and fuzzy category when it comes to JE and his escapades.

But, JE is her dad.  She is doing what families do.  We stand up for each other in our time of need.  We have one another’s back.

I have no doubt she loves her father deeply.  And I have no doubt she loves her mother, still.  I just hope she is not asked to discuss the love between her parents.  It would be awful to be placed in such a lousy situation.  Plus, isn’t that heresay, anyway??

I would just hope that if the word love gets bantered about, if "love" and this need to "protect" EE from the truth at all costs gets tossed all over the place, we are all able to pause and refocus on the issue.  He got caught and was doing everything and anything to save his ass.  His paramour was the recipient of funds.  It was covered up by many according to the reports I have read.  What that means within the context of the law and this criminal case is of no concern to me.  I just hope we can stay on point and remember some of the basics of human decency.

Those who love do not act in ways that are so deliberately hurtful.  People who love deeply and purely and with honesty want to protect those they love from as much harm as humanly possible.  Having an affair, having many people working to cover up the affair and having a child with a woman other than one’s wife?  Definitely NOT love.   The fact that the wife in this scenario was dying makes it worse.  And yes, I acknowledge that is my opinion and solely my opinion, and YES, I AM stating it as a fact.  JEEZ, ya coulda just got a divorce.  Did you need to do THIS to the dying mother of your children, one of whom you buried years earlier.  I don't get it.  And I never will.

IF that shoe were crammed on my foot……. If my kids chose to do anything other than stick to their own feelings and leave me out of it….. well… I know I’ll be dancing in the flames on the Edge, the Edge… and I can pretty much guarantee this much.  That aforementioned pre-signed check?  It would bounce back faster than a tightly wound spring, boldly rubber stamped:

STOP PAYMENT

  

THE BRILLIANT DOCTOR-EMPOWERED PATIENTS

This guy is a genius.  Dr. Rob Lamberts wrote this on his blog.  I'm big on the empowered patient thing.  I know I sound like a broken record when I advocate the need to be the head of your own medical team.  If, like me, you have an ailment that requires a multi-disciplinary approach (just a fancy way of saying you have a whole mess of damn doctors that you have to see in the course of a year), someone needs to be the captain of the team.  Someone needs to have all of the information.  In one place.  Someone should be leaving the office with copies of any test results. That person should be You.  If it can't be You, it should be someone you love and trust and someone who is willing to take on that role.  And they MUST be capable.  And THIS is why.  And a big shout out to Dr. Rob Lamberts.....  If you want to poke around on his blog where this post appears, just click the title and you will be whisked right over.

Ten Bad Assumptions Patients Make

Don’t assume anything.  Ok, I guess there is one thing you can safely assume in our health care system:  the crash position.

Sorry.  Unfortunately, it is more true than I wish.

Assumptions can kill.  Assuming something regarding your own health care can cost you money, cause you pain, and kill you.  Here’s my list of potentially harmful assumptions:

1.  Standard care is the right care.

Much of what doctors do is based on, or at least consistent with science; but a lot of care goes on despite that science says otherwise.  A group of physician organizations recently banded together and published the Choosing Wisely Campaign, a set of “things patients and physicians should question.”  The groups urge doctors and patients to choose care that is:

• Supported by evidence
• Not duplicative of other tests or procedures already received
• Free from harm
• Truly necessary

Here’s a sample of things done frequently that the Choosing Wisely campaign suggests questioning:

• Getting an x-ray for people with uncomplicated back pain
• Using antibiotics for sinusitis lasting less than 7 days
• Routine EKG’s on average (lower-risk) people
• Routine screening stress-tests
• Use of anti-inflammatory drugs (NSAID’s) in people with high blood pressure, heart disease, kidney problems, or diabetes.

There are many more recommendations on the site, but the reason this campaign was launched was because of how often these rules are broken.  I must admit, I have had to change my habits in the light of some of these recommendations.

2.  My doctors communicate

I am a primary care doctor, so I am supposed to be the hub of a patient’s care.  If a patient of mine goes in the hospital, has surgery, sees a specialist, or goes to the emergency room, I am supposed to be notified.  Unfortunately, this is probably not even true in of 50% of these situations.  Even when patients ask specifically to have records sent to me, they often aren’t there.

Specialists also have this problem, often getting consults without a clear reason.  Often this is a problem at the referring physician’s end, but we have had numerous specialists turn down offers to access our records.  We have also offered access to our records by hospitalists and ER doctors, only to be been turned down.  Many doctors prefer to give care with only information they gather.  It is rare that any doctor has all of the information that may be helpful.

An exception to this is the integrated care system run by a hospital (usually), in which doctors all share medical records.  Clearly the sharing of information in that setting is better than in my world, but being under the care of a hospital gives other disadvantages I will discuss later.

3.  My doctor has accurate records

Not only do I not have much of the information that comes from other doctors, but the information I do have in my records are not always accurate.  The biggest culprit in our office is old information that doesn’t get taken off.  It takes a large amount of time to make sure a person’s records are accurate, and there are no insurance companies willing to pay for improved accuracy.  So accuracy only happens when doctors take time away from reimbursed patient care and work to organize the records.  Again, our office makes a valiant effort at keeping things accurate, but I have found that it takes a huge amount of time, planning, and energy to keep records updated.

I personally don’t think this will change until the patient becomes responsible to keep their own records.  Nobody will ever care about a patient’s records as much as the patient does.  In the mean-time, I recommend that you keep an updated list of your medications, surgeries, problems, and even your family/home situation and bring it with you to visits.

4.  No news is good news

If you have a test done and don’t hear anything about the result, do not assume it is fine.  This assumption kills people.  I have too many patients with too much information flying at me every day for me to catch every important detail.  Sometimes things are missed, but sometimes the results don’t come to our office.   We have trained our patients to expect an email or letter with their results within a certain amount of time, so they sometimes call when the test results don’t come in.  I tell them to do so in the clinical summary sheet I hand out at the end of each visit, but the assumption remains.

Always know what tests are being run, and always get the results of those tests (in writing, if possible).

5.  I will be notified when things are due

Are you due for a colonoscopy, thyroid lab tests, a follow-up CT scan, or a diabetic eye exam?  Most people don’t know exactly when things are due, and many assume they will be notified when this is the case.  Gastroenterologists do often call when the follow-up colonoscopy is due, and mammography facilities sometimes call for a follow-up, but these are exceptions to this rule.  Doctors often say “repeat test in six months,” and then expect the patient to call to schedule after six months.  Even patients coming into the office may not be reminded of overdue tests, mainly due to the disorganization of medical records (#3 above).  If you think you might be due for something, ask.  Even asking the question, “are there any tests or labs I am due to get done?” can help remind providers to check for these things.  Remember, it is incredibly hard to keep records organize, so don’t assume your doctor’s office will act anything like Jiffy-Lube.

6.  Hospitals care

The commercials boast of how local hospitals are “there for you when you need them most,” and “your advocate for your health.”  This is horse hockey.  The people in the hospital may be caring and kind.  The doctors, nurses, and even administrators may want you to be healthy.  But the hospital is a business which requires people to be sick and have lots of procedures done to be profitable.  Most health care dollars are spent in hospitals, and many times those dollars do no good to the patient.  I’ve seen end-stage cancer patients get heart catheterization, people with dementia spend weeks in the ICU, and countless other procedures are done with no benefit (other than income to the hospital).

Don’t be fooled.  Your goal is to stay healthy and stay out of the hospital;  your doing so is bad for the business of hospitals.

7.  More is better

I have patients frequently asking for tests they don’t need.  Shouldn’t people get yearly lab panels?  Shouldn’t kids get their cholesterol checked?  What about those screening mobile tests for carotid artery plaques or PAD?  It’s hard to make my patients understand that in saying “no” to tests, I am being a better doctor.  I talked about this in an earlier post, but it bears repeating.  If someone has a high chance of having a condition, screening for it is useless (doing a strep test on someone with an obvious strep throat).  If someone has a very low chance of having a condition, screening for it won’t reduce the risk (CA-125 screening for ovarian cancer, for example).  Having more information is often not helpful, can lead to unnecessary worry or further testing, and costs a lot of money for no gain.  I don’t want more information, I want the right information.

8.  New is better

What about that new drug advertised on TV?  What about the surgery done by robots?  Should I take that antidepressant for pain?  Do I have low-T?  Should I go to the hospital with the brand new 200 gazillion dollar heart pavilion? Always look at advertising with a skeptical eye.  The main reason businesses spend money on advertising is that they want to make more money when you use the thing they advertised.  The 200 gazillion dollars for the heart pavilion has to come from somewhere.  There’s a reason why you first heard of “low T” on television and not from your doctor: the company who wants to fix your T wants your money.  Robotic surgery is surely cool, but it is also really expensive to buy that machine, and hospitals need you to want the “cool” surgery so they can pay for those machines.

Sometimes “new and improved” is a truthful boast, but usually it is a means into your wallet.

9.  The doctor will think I am stupid

I often have patients apologizing to me.  They apologize when they have a “weird” symptom, when they “ask too many questions,” when they stop taking a medication due to side-effects, and when they are really, really worried about something.  They seem afraid that I am going to roll my eyes and think of them as “one of those patients” – the kind that I complain about to my office staff.

I hate it when people apologize.  Apologies assume there is some standard or expectation that a person is not meeting, and the only expectations that I have of my patients is:
a. they have or want to prevent medical problems
b. They want my help.

Why should I get mad at people for either of these things, as it is the job of a doctor to help people who need them.  I know there are doctors out there who treat patients like bad kids or like they are morons, but those doctors are out of step with reality.  They are the morons.  I don’t apologize to the barber that my hair grew.  I don’t apologize to my accountant for having tax questions.  Understand your position as the paying customer; get what you paid for.

One warning on this one: viewing yourself as a customer cuts both ways.  If you have the right to get what you pay for, the doctor has the right to be paid for what they give you.  People often think docs should do what they do out of pure charity and kindness, which is wrong.  I may expect the mechanic to be kind and charitable, but I should also expect to pay them for what they do.  This means that expecting your doctor to spend 30 minutes with you and only charge you for a 5-minute visit is not fair to the doctor (or his wife and kids).

10.  Doctors don’t want to be questioned

I hope I am not unusual in this, but I would rather have patients question what I do than to accept everything I say.

Patients’ questions help me in several ways.  First, they let me know what I am not explaining well enough.  I think people follow instructions better when they understand them, so if you don’t understand what I said, ask.  Second, questions build my credibility.  If I can explain the reason for my recommendations, I am more trusted.  If I fear questions, then it looks like I am hiding something.  Third, and most importantly, questions sometimes lead to better care.  Sometimes patients ask me about something I haven’t considered.  Sometimes the questions make me think things through and see my faulty logic.  Sometimes questions make me look for information and learn something.

Good doctoring has a whole lot of teaching in it.  Teaching is not a goal in itself, however; the goal is to get the person being taught to understand.  If you don’t understand what’s being done, why you got a prescription, or what your diagnosis is, ask.  If you wonder about another possible diagnosis, ask.  If your doctor doesn’t like you asking questions, ask for a copy of your records and find another doctor.

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This material, written by me, is free to re-post and share under the Creative Commons agreement. In other words, use it all you want; just give me credit.


Thank you Dr. Rob Lamberts for reminding us that when we Assume, we make and ASS out of U and ME.