SENDING LOVE @ANGEMERENDINO

Tomorrow will be a bittersweet day for Angelo Merendino.  He should have been celebrating his wedding anniversary with his beloved Jen.

Many of you already know about Angelo's photography.

A digital book of The Battle We Didn't Choose is available for purchase.  Tomorrow, September 1!

Please support my friend, Angelo as he opens his heart and shares his story of love through some of the most powerful photographs you will ever view.

Click over to Angelo for the details.  Please share this in as many places as you see fit.

I'm unplugged until Tuesday (or possibly Wednesday) but the magic of auto schedule has enabled me to set this up to coincide with the launch of the book.

I got a sneak peek.  It's beautiful and it's haunting and it's especially poignant because much of what Angelo describes through his words and his photographs is quite familiar.  Jen and Angelo are part of the MSK family.

Angelo.... sending tons of love and support your way.  Fulfilling your promise to Jen in establishing The Love You Share to help others with transportation and meal expenses is an exceptional way to honor Jennifer's memory.  Sharing so much that is so personal in such a public way is a beautiful expression of your love.  I wish you peace and an inner calm as you continue to honor Jen and advocate on behalf of the needs of others.

It's the little things that always have the biggest impact.  What you have done is remarkable.

I'm honored to know you and I'm beyond grateful for your continued support of this community.

Like it?  Share it!

CAN WE HANDLE THE TRUTH? LET'S REVIEW.

At one of the science meetings I attended, a young researcher approached the podium. He was presenting findings. His opening statement said much. I'm paraphrasing.

"I have no financial disclosures to share. I wish I did."

The statement drew laughter from the audience. At the conclusion of many presentations, it may be announced that one or more of the study investigators has ties to the manufacturer of a compound that was part of the study protocol.  It's called transparency. 

In that same spirit, my impressions of The Truth In Small Doses are in no way impacted by the fact that I was sent a complimentary copy of the book by the publisher.  Thank you, Simon and Schuster.  Manners first.  I will say, before the offer was made, I pre-ordered the book for delivery to my iPad, my kindle, my iPhone and even my laptop. The devices know if I've read to a further page on a competing product so I'm not rereading (although, I've deliberately reread many passages to let the words settle into my brain).  It irritates me that my highlighted passages don't sync across all of the platforms. Maybe the developer can fix that?  Also, the kindle lets me tweet passages as I'm reading. That's pretty clever. Just throwin' it out there.....

Alas, a digression. 

Clifton Leaf has written a masterpiece. It is not for the faint of heart. And it's not an easy read for a chemobrain.  I think I've had enough exposure to the science at the meetings I've attended and in grant review panel discussions to grasp the importance of the information Mr. Leaf outlines in painstaking detail.

The details matter. Understanding how early research breakthroughs dramatically changed childhood leukemia from an automatic death sentence to a highly survivable cancer is the foundation for what follows in the latter chapters.  The mechanics of the research is an important facet of many points discussed throughout Truth In Small Doses.

Why are we stuck?  Why hasn't the research progressed in meaningful fashion? The operative word is meaningful.  The first chemo therapeutic agents are discussed. The cocktail that scrambled and rearranged my brain?  Yeah. All three medications were included in the first batch of effective chemotherapy drugs which were developed decades ago. I've bemoaned the lack of meaningful progress in a number of prior posts.

This is not to say that advances have not been made in the forty years since the infamous War On Cancer was declared. There have been plenty of success stories but plenty barely scratches the surface. We should have had far more success than we have to show for 40 years of research.  The recent discussion about the renaming of certain cancers to make them less scary, less ominous isn't the problem.  The real problem lies in the fact that we don't know nearly enough about the many diseases that are cancer.

Mr. Leaf has clearly done his homework.  He elucidates facts and figures.  He doesn't attempt to skew statistics.  Numbers don't lie.  The crude death rate, the number of deaths in women due to breast cancer has barely budged since 1970. Apologies to the men, I don't think you are being ignored, I just wonder how much statistical evidence was collected on male breast cancer in 1970.

In 2010, the number of women whose deaths were attributed to breast cancer?

26.1 for every 100,000 women.

In 1970?  It was 28.4 in the same 100,000 women.

Interestingly, that 28.4 number in 1970?  It rose over the next 20 years to 34 per 100,000 in 1990.  By the end of the century, in 2000, the rate at 29.2 was still higher than it was 30 years prior.

TECHNICALLY, where it counts most, saving lives, we actually digressed from 1970 through 2000.  The modest gain to 26.1 is only seen between 2000 and 2010.  No cancer has been more in the public eye than breast cancer.  On that, I'm sure we can all agree.  Death, I'm sure we can also agree, is the end point we are trying to avoid.  Yes, we will all die one day, but the fact that women are still dying of breast cancer without any real change in numbers is almost laughable.  Almost.  But not quite.  Actually, it's pathetic.  And before another digression ......

Outlining the process by which the bill now commonly referred to as Nixon's War On Cancer was crafted and then adjusted to suit the political climate, although not shocking, is an eye opener.  He discusses the peer review process at great length. Ditto the work required by scientists to prepare a proper grant proposal.  Scientists, Mr. Leaf contends (and I tend to concur) spend far too much time on the grant writing process rather than doing what they should be doing:  Research.

It's not necessarily additional funding that will drive us to truly innovative findings, but simply better management of the whole system.

I'm sure there are those who will pick at certain parts of the book trying to undermine the message.  I'm not an oncologist or a scientist.  I'm just someone who understands the basics and who is capable of applying simple logic when examining the need for change.

The shift is beginning.  We, as patients are more involved in our care.  Some of us participate to whatever extent we can, in the research process.  We understand evidence based medicine from snake oil.  We are getting impatient.  Rightfully so.

There is a series of stellar articles written by Alexander Nazaryan.  He profiled the book in an article for New Yorker.  The day of the release, he wrote about Truth yet again for the Atlantic Wire.  He included a great synopsis in a Books to Read This Summer piece in the same place.

In the New Yorker, many comparisons were drawn between Truth in Small Doses and The Emperor of All Maladies which was written by Dr. Siddhartha Mukherjee.  I had the pleasure of being in the audience as Dr. Mukherjee addressed a very large crowd at the annual AACR meeting.  Passionate and dedicated with an intelligence factor that is off any of MY charts, he was quite engaging.  Emperor and Truth are both important, they are simply written from different perspectives.

I will admit I took a bit of exception with the end of Mr. Nazaryan's article in the New Yorker .  I don't see Leaf as a frightened patient who yearns for a cure and Mukherjee as the sober oncologist concerned with getting the science right.  I don't see one book as a story and the other, an argument.

My only critique of those words lie in the fact it must be acknowledged that each author is looking at the problem through the prism of their own role within the paradigm.  Both parties belong at the table.  Each brings a wealth of experience and each can and will learn from the other.

The tone of Truth has a greater sense of urgency, as it should.  We must be insistent.  Incremental gains that are presently hailed as breakthroughs are not saving lives.  Our lack of the identification of  biomarkers that allow precancerous cells to progress forces many of us to make impossible choices.  WHEN will we finally get around to figuring out how to stop metastasis in its tracks.  Save lives.  The biggest reason cancer is a problem?  Simple.  Death.

Yes, drug toxicity and complications can play into the death of a cancer patient.  Hell.  That's precisely what happened to my dad.  Primarily and in most cases, however, cancer kills when it metastasizes.  In his 2004 article in Fortune Magazine, Clifton Leaf makes a number of brilliant statements regarding the paltry funding for research and our inability to stop a cancer from metastasizing.  That article is the basis for the book.

Everything about Truth In Small Doses screams Disruptive Innovation.  Sometimes, fresh eyes, ones that aren't inside the circle of familiarity, may see ways to disrupt the status quo so that real progress, meaningful progress, may be achieved. It's time for true collaboration.  It's time for partnerships.  It's time to be disruptive.

Clifton Leaf's prose is timely.

Ed Note:  There is another piece in The Atlantic today.  This one was written by Jacoba Urist.  

Like it?  Share it!

IDENTITY THEFT, AGAIN?? TAKE.IT.ALL.....

On August 24, 2012, I wrote a blog post about some stupid bitch who stole my identity.  It was one of my more entertaining posts if I do say so myself.

Three months ago, again.  Someone else grabbed a piece of me.  Blogged about that, too.

Three times a charm.  Almost one year to the day.  Wanna see?  Go look.  The credit card that was sent to replace the one being used online.... yeah.  Someone got that card information.

This is how my day went.  The breaker in the electric panel tripped.  I happened to have been in the room when it happened.  It was all the pool equipment.  I heard everything shut down simultaneous to: "CLICK" ....the breaker tripped at the same time.  Got up, walked to the box and the thing is burning hot.  I know it's something with the heat pump.  But a hot circuit breaker scared me.

I contacted the guy who repaired the pump last year.  Went through the whole sequence of events.  They will send someone right away.  And they did.  The only reason I'm adding that to this little story is because this whole event took time.  Bottom line, I need an electrician.  Apparently, this problem has nothing to do with the pool equipment.  Apparently, there is a water issue and it may be dripping from outside and through the back of the breaker box.

I know one thing.  Electricity and water are much like oil and water.  They don't mix.  Except the former could be deadly. Or the hot breaker could cause a fire.  And, one of my smoke detectors isn't working.  Yeah.  I won't be sleeping tonight.

That commotion was resolved in about two hours... well, not resolved but I learned the guy isn't the right repair guy.... Electrician and someone to figure out how the water is getting into the house both lined up.

Problem in the resolution queue, I pulled up a spot on my favorite sofa, grabbed my BRAND new MacAir, ready to get through the pile of paperwork that is beginning to impede my space.  The evening before, I finally replaced my laptop. I was running out of room on the hard drive (apparently it's from a bunch of iPhone and iPad backups but still......) and the thing was hanging up a bit too frequently.  It was just another fire waiting to happen.  I wanted to begin playing with the new toy.  I didn't migrate anything over yet but everything is in a cloud somewhere.... Dropbox, Google Drive and The.Cloud.  Also in that cloud?  Apparently, my head.

The phone rang.  My favorite.  A robot!  Except it wasn't Diane asking about my need for carpet cleaning or some dire voice advising me this is my final chance to consolidate my debt.......

"This is the Citibank Fraud Early Warning department calling for  ....  "

followed by the usual struggle to pronounce my name .....

"If you are ..... (insert struggle) .... please press one"

Pressed.

"Please listen to the following transactions.  Did you make a purchase at Apple Store on August 22 in the amount of $851.32?"

Now, I'm staring at the phone.

Did I?  I was just at the Apple Store.  Maybe they process late transactions the following day?

And my mind was trying to keep up.  "That's not the amount.  You didn't use this card."

I pressed the please repeat button.  Really, I wanted to buy myself a moment to organize my thoughts before I got on the phone and made an idiot of myself.  Logic stepped in and I pressed whateverthehellnumber was NO, I did NOT make that purchase.

"Please wait for an associate."

Not for nothing, but I think when you press the alarm, i.e. the number indicating you did NOT make a purchase, someone should be on the line within seconds.  While I was waiting, I logged into my online banking account to take a look.  I saw the pending transaction.  WTF????

Someone finally got on the phone.  She said, "The card was physically swiped at the Apple Store in Lake Grove."

"When?"

"Within the past hour."

I said, no, it definitely was NOT me.  I wanted to add, "Listen, I've been here putting out fires, you got this one," but I just shut up.  She then asked me if the card was in my possession.  I told her it was and she asked me for the code on the back of the card.  I went to grab the card, thinking perhaps it fell out of my wallet in the Apple Store the night before.  It was all too odd.  I half expected the card to be gone.  Except it wasn't, it was right where I knew it would be.

"OK," she told me, "I'm closing this account right now."  Something begins to click.  The Apple Store where this card was physically swiped is at a shopping mall that is 30 miles from my home.  I could be there in 30 minutes.  I began to get a little creeped out.  Someone has a credit card with my name on it and they are parading around the mall?

While the representative from Citibank was going through the process, she announces, "Oh... the card was JUST swiped a second ago.  Macy's.  $350.00"  I'm just slightly astonished, "This is happening in real time?"

"Yes, when the card is swiped, we can see it and the card was just swiped at a cash register in the department store."

The charge was stopped.  The person was IN THE STORE with the card.  Security could have been at the register in a split second.  It doesn't work like that.  They don't actually care about catching the person.  The card was marked "STOLEN" so the next attempt would not just be declined but the merchant would see the word "STOLEN."

And what did I learn?  Most merchants will not do anything when they see the stolen message.  They just return the card to the person and say it was declined.  Upon reflection, I'm sure I'd do the same thing.  And I'm also sure, I'd immediately call security to have them stop the person before they exited the store.  I wouldn't confront a thief.  Too risky.  Fair enough.

Suddenly, it dawned upon me....  "The $800.00 charge was approved?"  And I learned that indeed it was..... I called the Apple Store after I was finished with Citibank.  Yes, the bitch got out of the store with a brand new iPhone 5, unlocked which is to say the only thing this person needs to do is go to any cellular carrier and get a SIM card.  Back in the day, iPhones didn't use SIM technology.  And she treated herself to a case for the new phone, too.

Someone still wants my life.....  I wouldn't trade places with anyone but damn it to hell.... if this bitch is reaping rewards, I want her to share some of the annoying shit, too.  Maybe SHE can stand in for the second round of oral surgery that will be taking place in a few short weeks.  Maybe SHE can deal with health insurance companies so my friend and I can take a little break from the action and the bullshit that we've dealt with for the past two months.  And maybe SHE can pay for the merchandise I purchased at a nearby Apple store less than 24 hours earlier.

I get it.  These are simply nuisances when compared to what I would call real problems.  It's just that I have much better things to do with my time.  I don't like wasting it on bullshit.  This, quite frankly, has been one giant heap of it.  And it's consumed a whole lot of time.
  
Like it?  Share it!

HOW TO SAVE A LIFE

Project Violet

Dr. Jim Olson

Before we get to that, have you heard of Tumor Paint?  I certainly didn't and I fancy myself someone who pays attention to things that are new, innovative, out of the box thinking.

How do you feel about scorpions?  I'm okay with Scorpio's especially since that 's where I fall on the astrological calendar but scorpions?  No so much.

Hold on.  Not so fast.....  Jim Olson is a pediatric oncologist at Seattle Children's Hospital.  He's also a professor at the University of Washington.  In other words, he has some serious street cred.

While I have no idea how he feels about us Scorpio's, I know he is a fan of the scorpion.  Specifically, the venom of this critter (creature, bug, killer?)..... Yes, I did just do a wiki detour.  Aside from the fact that it's in the spider crowd,  my Jeopardy reply.... "What do scorpions have in common with this blog whose author is a Scorpio?"

The category?  Continents.

The answer: Antarctica.  The only continent where scorpions are not found and the only continent from which this blog has not been read.  YET.

Jim Olson is also a brain cancer researcher at Hutchinson Cancer Center in Seattle.  (In case those prior credentials weren't enough, Hutch is one of those awesome cancer research centers.)  To simplify what I am certain must be a very complex process, tumor paint is comprised of a molecule that is attached to the venom of the scorpion.  The combination acts like a flashlight on cancer cells in the brain.  They light up.  This allows the surgeon to see exactly what areas need to be removed without touching healthy tissue.  It's the brain.  The preference would be to keep as much as possible.  DUH.

This work is still in animal trials with human trials in the works.  Read his profile.  He's also working on drug resistance, something of tremendous interest to me considering my mom's metastasis (also simplifying) is a result of a drug resistance.

Jim's latest effort has spawned Project Violet.  Violet was a little girl.  With a deadly brain cancer.  Project Violet is "Citizen Science" which is to say, you choose exactly where your donation is used.  In fact, you get to name the drug.  The whole process is very intriguing.  In addition to the scorpion, they are researching proteins from petunias, potatoes, spiders and horseshoe crabs.  The first batch of diseases they are targeting?  Of course, cancer.  And also (among others) brain and mental health disorders.  All three are high ticket items in my life.

The ingenuity, the project design, the promise in the research.... all very fascinating.  Even if you don't want to click to see how the Tumor Paint documentary found its way into the Sundance Film Festival and if you are not in a position to adopt a drug of your own, please listen to the TEDxSeattle talk delivered by Dr. Jim Olson.

The Washington Research Foundation will donate up to $50,000 to the project.  Each view of Jim's TED talk triggers a $10.00 donation.  Please help spread the word.  Share the You Tube video.  The goal is to get 20,000 views during the month of August.  There are only ten days left in the month.

Go. Watch. Share. NOW!

"It's A Beautiful Day To Save Lives" overheard from an operating room at Seattle Grace Hospital. Derek McDreamy Shepherd.  Grey's Anatomy, anyone? Hey, if it fits..... 

    Like it?  Share it!

LET THERE BE LIGHT

There will be walks.  There will be pink boas.  There will be pink everything.  It's starting.  It creeps into the stores now to catch the "back to school" purchases.

This year, those of us who know better, need to share the facts.  Breast cancer is NOT the success story that has been painted with broad pink brushstrokes.  Earlier detection hasn't changed the mortality rates.

What to do?  Speak the truth.  Share the reality.  Change the conversation.  Get as many people on the same page as possible.

METAvivor.

Project Light Up.

Just like a pink ribbon isn't the cure for cancer, neither is lighting buildings BUT, first we need to garner some attention. We need people to see colors other than pink in October and ask some questions.  Then, we can share the message.

Project Light Up is a 2013 METAvivor initiative.  Thanks to a dedicated supporter, Houston City Hall was lit in the colors of the METAvivor ribbon last October .  Green.  Pink.  Teal.

Blue is the substitute color for teal

That sparked the idea that we might approach other buildings for this October.

October 13 is traditionally the one day we try to move from pink mania and put the focus on metastatic breast cancer.

This October 13, Niagara Falls will interrupt its nightly light show.  Twice.  At 9PM and  again at 10PM, the show will stop for 15 minutes.  During that time, the Falls will be teal.  They aren't equipped to use more than one color.  Teal was chosen as it is METAvivor's primary color.

The Niagara Falls Illumination Board is responsible for the lighting.  It will be visible on both the Canadian and the US side of the falls.  I would like to offer my most sincere thanks to the good folks at the NFIB for responding so quickly and approving the request.

It's official.  It's on the website.  Hopefully, someone lives near the falls and can snap a photo or two!

If anyone has ideas for similar Light Up's, please let me know and I'll put you in touch with Shannon who is coordinating the effort.

NIAGARA FALLS!!  Yep, I'm pretty damn excited about the whole thing!!!!



  Like it?  Share it!

BEYOND BEDSIDE MANNER

Why I love my oncologist?  OUR oncologist.... he's got my mom's back now.

This appears in Cure Magazine's digital issue.  A guest blog, it's about listening to your body, being your own advocate, seeking second opinions....

A must read simply because you will quickly understand why I feel so very fortunate.  There are doctors and then there are those who know how to combine the science of medicine with the art of medicine.

What I might have taken for granted because I didn't know any other way, I now realize is exceptional care.  We've all been that concerned patient, we've all needed reassurance and comfort, we've all wanted to know our doctors were taking us seriously.  Even if we were having a meltdown.  With limited information and no where else to turn.....

"The role of the oncologist in caring for a very concerned patient is to listen carefully to the patient's complaint and order the appropriate tests to determine if the problem is a significant one that requires a specific treatment," says Sugarman......

"If the complaint turns out, after full evaluation, not to be serious, then the physician should prescribe the best plan, give the patient instructions on what changes to look for that would require further investigation, and provide words of reassurance and comfort to the patient."

He's not just selling a bill of goods to generate a good blurb for a magazine.  This is the way he practices medicine.


  Like it?  Share it!

SENDING LOVE TO CATHERINE

I'm trying to put the brakes on what feels like a runaway train.  My life.

It's been a long week.  A too quick summer and a very long week.

Monday?  Glorious.  Terri, A Fresh Chapter, Terri who has been traversing the continent spent the day with me.  Here.  In my home.  We had a wonderful day together.  Doing nothing for a while and then, separately, retreating to our laptops to get some work done.  Lunch at a great NY pizza joint, hugs at the train station.....

Tuesday?  Heartbroken.  I've been worried about Catherine.  Exactly one year ago, she was in NYC and we met for tea. We strolled the streets of Brooklyn and had a beautiful summer visit.  A cancer diagnosis for her first wedding anniversary, still in her 20's.  This summer?  Catherine was moving beyond cancer.

What began in June, screening, with plans of starting a family, of having a baby, came crashing down on August 13th.  Two months into what should have been great anticipation about the next chapter, her world has been shaken to its core. Zsolt's too.

Not Awesome News was delivered by Dr. Canada.  Catherine, whose 31st birthday was just about a month ago has been diagnosed with metastatic disease.  The breast cancer is in her lungs.

I'm really pissed off.  I know you guys in the labs are trying your best, but damn it to hell, your best isn't good enough anymore.  We need more research, different research, a new angle.  Frankly, the status quo stopped working a long time ago.  This week, it really hurts.  Lots.

For you, Catherine.  Right by your side, steadying your step.  Sending love.

  Like it?  Share it!

TIME TO LOSE THE #STIGMA -- #MENTAL ILLNESS IS A BIOLOGICAL DISEASE

Because I'm quite sensitive to all things related to brain injuries, this was sent to me by two separate people. I love my cyber family.  We know who needs to see what and big thanks for tweeting this article to me.

It was in the NY Times.  It was an opinion written by Juliann Garey.  The title?  When Doctors Discriminate.  I think I read it three times.  My brain was on the repeat setting when it's normally on shuffle.  I was so angry after the first pass, I read it again to double check my sensitivity meter wasn't malfunctioning.  The anger thermometer was rising and after the third time, I finished the blog that I posted yesterday and knew I'd simply punctuate the point by sharing this.

Juliann Garey has an injured brain.  When she needs medical attention.... never mind.... read.  And if this doesn't anger you as much as it angers me, then I'm going to quadruple check my sensitivity meter. This is wrong.  On every level.  It's wrong.

Reprinted below, the NY Times article can be found here.

THE first time it was an ear, nose and throat doctor. I had an emergency visit for an ear infection, which was causing a level of pain I hadn’t experienced since giving birth. He looked at the list of drugs I was taking for my bipolar disorder and closed my chart.

“I don’t feel comfortable prescribing anything,” he said. “Not with everything else you’re on.” He said it was probably safe to take Tylenol and politely but firmly indicated it was time for me to go. The next day my eardrum ruptured and I was left with minor but permanent hearing loss.

Another time I was lying on the examining table when a gastroenterologist I was seeing for the first time looked at my list of drugs and shook her finger in my face. “You better get yourself together psychologically,” she said, “or your stomach is never going to get any better.”

If you met me, you’d never know I was mentally ill. In fact, I’ve gone through most of my adult life without anyone ever knowing — except when I’ve had to reveal it to a doctor. And that revelation changes everything. It wipes clean the rest of my résumé, my education, my accomplishments, reduces me to a diagnosis.

I was surprised when, after one of these run-ins, my psychopharmacologist said this sort of behavior was all too common. At least 14 studies have shown that patients with a serious mental illness receive worse medical care than “normal” people. Last year the World Health Organization called the stigma and discrimination endured by people with mental health conditions “a hidden human rights emergency.”

I never knew it until I started poking around, but this particular kind of discriminatory doctoring has a name. It’s called “diagnostic overshadowing.”

According to a review of studies done by the Institute of Psychiatry at King’s College, London, it happens a lot. As a result, people with a serious mental illness — including bipolar disorder, major depression, schizophrenia and schizoaffective disorder — end up with wrong diagnoses and are under-treated.

That is a problem, because if you are given one of these diagnoses you probably also suffer from one or more chronic physical conditions: though no one quite knows why, migraines, irritable bowel syndrome and mitral valve prolapse often go hand in hand with bipolar disorder.

Less mysterious is the weight gain associated with most of the drugs used to treat bipolar disorder and schizophrenia, which can easily snowball into diabetes, high blood pressure, high cholesterol and cardiovascular disease. The drugs can also sedate you into a state of zombiedom, which can make going to the gym — or even getting off your couch — virtually impossible.

It’s little wonder that many people with a serious mental illness don’t seek medical attention when they need it. As a result, many of us end up in emergency rooms — where doctors, confronted with an endless stream of drug addicts who come to their door looking for an easy fix — are often all too willing to equate mental illness with drug-seeking behavior and refuse to prescribe pain medication.

I should know: a few years ago I had a persistent migraine, and after weeks trying to get an appointment with any of the handful of headache specialists in New York City, I broke down and went to the E.R. My husband filled out paperwork and gave the nurse my list of drugs. The doctors finally agreed to give me something stronger than what my psychopharmacologist could prescribe for the pain and hooked me up to an IV.

I lay there for hours wearing sunglasses to block out the fluorescent light, waiting for the pain relievers to kick in. But the headache continued. “They gave you saline and electrolytes,” my psychopharmacologist said later. “Welcome to being bipolar.”

When I finally saw the specialist two weeks later (during which time my symptoms included numbness and muscle weakness), she accused me of being “a serious cocaine user” (I don’t touch the stuff) and of displaying symptoms of “la belle indifference,” a 19th-century term for a kind of hysteria in which the patient converts emotional symptoms into physical ones — i.e., it was all in my head.

Indeed, given my experience over the last two decades, I shouldn’t have been surprised by the statistics I found in the exhaustive report “Morbidityand Mortality in People with Serious Mental Illness,” a review of studies published in 2006 that provides an overview of recommendations and general call to arms by the National Association of State Mental Health Program Directors. The take-away: people who suffer from a serious mental illness and use the public health care system die 25 years earlier than those without one.

True, suicide is a big factor, accounting for 30 to 40 percent of early deaths. But 60 percent die of preventable or treatable conditions. First on the list is, unsurprisingly, cardiovascular disease. Two studies showed that patients with both a mental illness and a cardiovascular condition received about half the number of follow-up interventions, like bypass surgery or cardiac catheterization, after having a heart attack than did the “normal” cardiac patients.

The report also contains a list of policy recommendations, including designating patients with serious mental illnesses as a high-priority population; coordinating and integrating mental and physical health care for such people; education for health care workers and patients; and a quality-improvement process that supports increased access to physical health care and ensures appropriate prevention, screening and treatment services.

Such changes, if implemented, might make a real difference. And after seven years of no change, signs of movement are popping up, particularly among academic programs aimed at increasing awareness of mental health issues. Several major medical schools now have programs in the medical humanities, an emerging field that draws on diverse disciplines including the visual arts, humanities, music and science to make medical students think differently about their patients. And Johns Hopkins offers a doctor of public health with a specialization in mental health.

Perhaps the most notable of these efforts — and so far the only one of its kind — is the narrativemedicine program at Columbia University Medical Center, which starts with the premise that there is a disconnect between health care and patients and that health care workers need to start listening to what their patients are telling them, and not just looking at what’s written on their charts.

According to the program’s mission statement, “The effective practice of health care requires the ability to recognize, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence is a model for humane and effective medical practice.”

We can only hope that humanizing programs like this one become a requirement for all health care workers. Maybe then “first, do no harm” will apply to everyone, even the mentally ill.

The author of the novel “Too Bright to Hear Too Loud to See” and a co-editor of “Voices of Bipolar Disorder: The Healing Companion.”

  Like it?  Share it!

IT'S AN INJURED BRAIN -- #MENTAL ILLNESS NEEDS A NEW NAME

I am most grateful to each and every one of you for reading and for commenting on the last bunch of posts.  Clearly, patient engaged care is something that evokes strong feelings in me.  Apparently, I'm not alone in my thinking.  Cancer?  I could do it for myself, by myself.  Or not.  But, an option exists.

Although fatigue and, in general feeling like shit, might make self advocacy a difficult task.  Difficult does not mean impossible.  For some, impossible does mean impossible.  This is a big problem.

Who engages on behalf of those who are incapable?  Those whose brains are misfiring in ways that preclude them from self-advocating, those living with (and in many cases under the stigma of) a debilitating mental illness.

It was the end of June.  Mrs Mom and I were driving from one hospital where no care would be provided, to a facility that actually has programs to treat those afflicted with mental illness.  When we arrived, it was late in the afternoon.  It was also a Friday.  Take note.  That's an important tidbit.

We sat in a hallway while the intake department did their thing.  One very big difference?  Mrs Mom wasn't asked to sign anything.  No doctor ordered an involuntary hold.  This was a voluntary self admission, signed by a young adult.

By the time we got to the unit, it was after 6PM.  We were able to stay for a little while, we got to tour the floor and see the other patients.  This was a far different environment.  It just felt, for lack of a better word, safer.

The problem with this scenario?  Although this facility was a hospital where there would be therapy and med management, no one works on Saturday and Sunday.  It's the B team.  B for Babysitters.  Also, by mid Saturday, it became clear that this was not the proper setting.  It was a unit that focused on a specific set of issues.  A broader spectrum of care was necessary.

Monday morning, the staff begins rounds.  And again, stupidity.  The doctor and the therapists visit.  Three nights and three mornings had passed.  The new patient wasn't really that new.  "I will be leaving later this afternoon,"  which prompted more unacceptable behavior.  Attitude.... a bit of bully pulpit bullshit....  directed at a person who is mentally quite fragile.

The doctor admonished, "You signed yourself in for 72 hours, you won't even be here for 8 hours.  You must stay."

"No, I'VE been here for 72 hours.  No one else was here to do anything aside from provide me with meals and medication.  That's not my fault."

They went round and round doing this dance in the hospital. Mrs. Mom quickly realized the staff was in full court press mode, insisting they needed time to do a proper evaluation.  Repeatedly being told, "Saturday and Sunday don't count," the pressure was on.  Phone calls were flying between my friend and her kid, then my friend and me, then my friend and the social worker.  Ultimately, I found myself at my friend's home and soon, I was part of the phone chain.

There was a difference.  We already had an idea of what type of care would be appropriate from the first emergency room psychiatrist.  This facility was not capable of administering proper care in that unit.  However, there was another unit at the same hospital, on the same grounds, where additional treatment could be provided.  Care could have been supplemented using the present inpatient team and adding treatment, at an adjacent building, in the same facility, on the same campus.  I believe we call this personalized medicine.  To be honest, I can't think of any medical setting where personalized, customized, tailored care would be more important.

My friend's kitchen was turned into command central.  The social worker was trying to contact her own hospital, while my friend and I were contacting other facilities. Her landline was ringing and both of our cell phones were in use.   Somewhat annoyed, I grabbed the landline.  I recall thinking that it better be the social worker telling me she had this whole thing arranged.

Instead, "This is John.  I'm the care advocate from the health insurance company calling to check in.  Is there anything I can do to help?"  My jaw dropped.  The insurance company called without anyone initiating a call to their office?  I explained what was happening and how we were trying to arrange appropriate care.  I told him the social worker at the hospital couldn't get an answer from a department on her own campus.

Hell, it was a beautiful day.  She could have gone out for a three minute stroll and put herself in someone's face.  Instead, voice mails were left by her, by my friend, and by me.  One call was returned.  To me.  Six hours after it was placed.  We were already in the car on the way to the hospital.  A discharge was essential.  You see, even though the doctors attempted to employ bully tactics, John, who would become a trusted ally over the course of the next three weeks explained there were only 25 more mental health treatment days remaining.  We could ill afford to burn through another day of no treatment over what amounted to clerical inefficiencies.

Admission was refused to a facility close to home.  Ineligible.  No actual suicide attempt was made.  "Are there cut marks?"  ARE you kidding???  Dozens of calls over several hours to at least six places and we were no closer to any sort of resolution.  What began on Wednesday morning in the emergency room ended on Monday evening, the three of us back at my friend's house.  Armed with medication and no plan.

The following morning, the fun resumed.  It was like Groundhog Day.  Easily, there were notes and pads strewn across three or four rooms in her home.  All dead ends.  Every facility responded to our inquiries with some form of "We need to talk to the social worker."  Really???  My friend knows better than the social worker what kind of behavior she had been observing in the months leading up to this mess.  How about you talk to HER and we'll have the hospitals send you all the clinicals?  "No, you can't just come here off the street.  You have to be referred in by a social worker."

This stupidity continued for weeks.  Many weeks.  There were issues with insurance.  The care advocate got on the phone with the places that claimed there were insurance problems to cut through the red tape.  Except HE COULDN'T.  Go back and read that again.  Slowly.  The care advocate from the insurance company was incapable of cutting through the red tape.

The discharging hospital must get the "pre-approval" and the social workers from both of the hospitals were done with this case.  "I can't do anything after discharge."  This went on from 9AM until 5PM every day.  From July 1st through July 12th, nine days of calls by 2 of us.  Her kid remained nearby for HIPAA authorization or to leave messages for the local psychiatrist to fax records at the request of some of the places we contacted.

By close of business on Friday, July 12th, we were no closer to treatment than we were on June 26th when this began.  I am a seasoned advocate.  I was confounded at every single turn.  Two of us were working diligently for over two weeks and there came a point when I heard this small voice, "I'll just go back the to emergency room and tell them I'm going to hurt myself."

What if that were true?  Or worse, what if violence reared its ugly head. It's mental illness.  It's completely unpredictable.  It seemed like all was relatively calm but who knows what might trigger an episode that could push a mentally compromised person over the edge.  Certainly, there was enough time.  Had anything of some sort of tragic nature happened, either self harm or harm to others, I have to believe the masses would be passing judgement.

"How could the parents not have seen this coming?"

And I'm here to tell you, She Saw.  I Saw.  She was doing everything in her power to advocate on behalf of someone with a known mental illness.  An involuntary psychiatric hold?  That's pretty serious shit and damn near never happens.  We made sure each and every facility we contacted was aware of the involuntary admission in the psychiatric unit.  

She had help from me.  We had the assistance of someone from the health insurance company trying to provide us with a list of additional places to call.  When someone on the other end of a phone said insurance, our advocate was on the phone within moments.  The once or twice that he was not at his desk to answer the phone, our voice mails were returned in less than an hour.  There were dozens of calls to him.  He jumped through hoops.  Yes, he did.  And he was just as confounded as we were.  Doors slammed; "You aren't the hospital social worker" was the running theme.

On Friday, July 12, as it approached 4PM, it became clear we would be hand wringing for yet another break in the action.  We spent the weekend investigating every place we could find on the east coast.  By Sunday evening, we had compiled a list of about 8 possibilities.  Monday morning, the phone calls would begin anew.

Bottom line.  Between Monday and Tuesday all 8 possibilities were contacted.  Some returned calls, some still haven't called back.  After evaluating the very limited options, a choice was made.  The program is about 75 miles away, 90 minute drive time.  The care is comprehensive.  On one team, in one building, using office space that is side by side, includes a psychiatrist, therapists, groups, behavioral therapy, life coaching and there is a residence for those who do not live close enough to drive there every day.

It is an "out of network" program which can start me on another path of ranting.  If someone hadn't stepped up and handed over what amounts to a blank check, we would likely still be on the phones and what has been repeatedly described as a psychosis would still be untreated but for medications prescribed by clinicians that know little about what led us to this point.

What happens to those for whom there is no financial assistance?  Disparity among those with mental illness has to be one of the cruelest cuts of all.  Help is there for the haves.  And for the have nots, stabilized and put on the street to fend for themselves.  That's a disgrace.  

There is a long road ahead.  The treatment team has been in contact with Mrs Mom a number of times.  No diagnosis was made but it is rather serious.  They are being very thorough and very thoughtful before they affix a label.  From what I'm hearing, they've contacted her to fill in the blanks, to ask about specific behaviors, to learn about family history.  They've been somewhat generic in their statements, walking the fine line to make sure there are no HIPAA violations but sharing enough that my friend realizes she is on a long road.  And I'm on that road with her.

Footnote:
As I read the materials and do what I do, scour the research, it's a bit odd.  This blog began because my brain was injured. This, too, is a brain injury.  If we need to go on a renaming campaign, mental illness is the one to pick.  An injured brain just sounds like it would be less stigmatized.  

Like it?  Share it!