At Risk in the Computerized Hospital: The HITECH Act as Social Policy Malpractice, and Passivity of Medical Professionals

To contact us Click HERE
I am revisiting the issue of HITECH in light of recent reports on health IT drawbacks and/or failure to achieve long-claimed advantages.

The HITECH Act, a multi-billion dollar EHR incentive/penalty measure inserted into the 2009 American Recovery and Reinvestment Act legislation (ARRA or 'economic recovery' act), is proving to be an example of what should be called "Social Policy Malpractice."

The HITECH Act was largely a consequence of intense industry lobbying on behalf of the IT industry (as in the Washington Post at "The Machinery Behind Health-Care Reform: How an Industry Lobby Scored a Swift, Unexpected Victory by Channeling Billions to Electronic Records", May 16, 2009).

It is in fact not based on science or reliable evidence, and has led to increased patient endangerment and a worsening national debt picture.

The recent revelations of reports from diverse sources including but not by any means limited to the following indicate that HITECH and its expenditures of billions of dollars on experimental, unregulated, unproven technology representssocial policy malpractice:
 

• ABC News (Your Medical Records May Not Be Private: ABC News Investigation" - privacy of electronic health data is very poor, in ways that paper would and could never have permitted);

• The Center for Public Integrity"Growth of electronic medical records eases path to inflated bills", on how EHRs lead to increased, not decreased healthcare costs;

• Experts at Penn and Harvard -"A Major Glitch for Digitized Health-Care Records" - savings from EHRs are illusory;

• Budget reports - in view of the deficit spending reported by OMB and others that is causing national debt to spiral out of control, jeopardizing the economic well being of the United States, and with upcoding as a side-effect and no cost savings, HITECH is an unaffordable extravagance. 

• Recent revelations of outright EHR-induced mass chaos largely due to outspoken clinicians who've had enough - "Contra Costa County health doctors air complaints about county's new $45 million computer system", "Lake County (IL) Health Department - Depression era soup lines at the clinic";

• Abuses of NPRM Public Comment periods on followup health IT incentive regulations via industry ghostwriting (stealth lobbying), reducing EHR effectiveness while further enriching the industry - "Health IT Vendor EPIC Caught Red-Handed: Ghostwriting And Using Customers as Stealth Lobbyists - Did ONC Ignore This?";

Of course, I'd already cited these reports in past posts but they bear repeating:

• The IOM report on HIT safety ("There's risk, but we don't even know the magnitude because there are major systemic impediments to diffusion of that information"),http://hcrenewal.blogspot.com/2011/11/iom-report-on-health-it-safety-nix-fda.html;

• FDA (known injuries and deaths are likely the "tip of the iceberg" because of the impediments, and EHRs are medical devices that should fall under the FD&C Act, butFDA has largely refrained from enforcing our regulatory requirements with respect to HIT devices because they're a political hot potato- Jeff Shuren MD JD, CDRH), http://hcrenewal.blogspot.com/2011/04/fda-decides-regulating-implantable.html;

• NIST (health IT usability is poor, major remediation is needed) -http://hcrenewal.blogspot.com/2011/10/nist-on-ehr-mission-hostile-user.html

I'd called for a moratorium on ambitious EHR plans for similar reasons as far back as 2008, at posts here and here.  The path that ethical medical centers and clinicians should take is todelay computerization in 2012 and push for slowdown or retraction of HITECH and its penalties for non-adopters. 

Yet instead, what is usually seen is excuses and cheerleading by healthcare organization leaders, and passive physician and nurse acceptance of deficient information technology.  
This stunning passivity and acceptance by physicians and nursesof a deeply flawed technology of unknown risk seems largely due to physician learned helplessness and the Stockholm Syndrome.  See the posts on "physician learned helplessness" athttp://hcrenewal.blogspot.com/2007/10/physicians-learned-helplessness.html (commenting on observations in MedScape written by a lawyer), as well as on the "Stckholm Syndrome"  athttp://en.wikipedia.org/wiki/Stockholm_syndrome. 

Per a psychiatrist/informatics specialist Dr. Scott Monteith who has commented on this blog, the compliance of clinicians may also be a manifestation of the inherent human psychopathology reflected in the Milgram Experiment (and elsewhere):

The Milgram experiment on obedience to authority figures was a series of notable social psychology experiments conducted by Yale University psychologist Stanley Milgram, which measured the willingness of study participants to obey an authority figure who instructed them to perform acts that conflicted with their personal conscience. Milgram first described his research in 1963 in an article published in the Journal of Abnormal and Social Psychology, and later discussed his findings in greater depth in his 1974 book, Obedience to Authority: An Experimental View.

As to the consequences of physician "acceptance" of this technology in 2012 in its present condition, physicians are:

• Acting, in effect, 'in loco parentis' for their patients, not in the latter's best interests, who are not even afforded opportunity for informed consent.  This is in violation of long-accepted norms of human subjects experimentation and research such as the Belmont Report, Nuremberg Code and HHS human subject protection regulations at 45 CFR part 46 themselves;

• Giving free provision of their expertise and labor at improvisation and workarounds, in effect providing free alpha and beta testing to an entirely unregulated IT sector;

• Engaging in passive acceptance of the entire liability and their hospital executives' breach of fiduciary responsibility to protect them from same due to Hold Harmless clauses, and breach of Joint Commission safety standards through signing "gag" clauses on defects and harms (see http://www.ischool.drexel.edu/faculty/ssilverstein/cases/?loc=cases&sloc=koppel_kreda).

National health IT leaders have proven to be hyperenthusiasts about health IT benefits as well:

... This from Robert Kolodner, former head of the Office of the National Coordinator for Health IT (ONC) at HHS:

Dr. Robert Kolodner, a physician who headed the federal push for electronic medical records in 2007, acknowledged that billing abuse took a backseat to steps likely to entice the medical community to embrace the new technology.

Kolodner said officials were certain the savings achieved by computerizing medicine would be so great that billing abuse, “while needing to be monitored, was not something that should be put as the primary issue at that time.”

In other words, sideline (ignore) health IT-based billing abuse (and safety risks to the live patients subjected to this experimental technology without informed consent) because "we believe" the savings will be greater based on "our faith in the technology."

 Such individuals contributed materially to the social policy malpractice represented by the HITECH ACT.
Considering all of the above, I call once again for a moratorium on further economic incentives for EHR adoption, and investment in the very measures recommended by the National Research Council in its Jan. 2009 report "Computational Technology for Effective Health Care: Immediate Steps and Strategic Directions" that:

In the long term, success will depend upon accelerating interdisciplinary research in biomedical informatics, computer science, social science, and health care engineering.

This research must be conducted, of course, with full human subjects protections in place.
-- SS

Good Health IT (GHIT) v. Bad Health IT (BHIT): Paper is Better Than The Latter

To contact us Click HERE
An unspoken running assumption of the health IT enthusiast crowd seems to be that any health IT is better than no health IT, because using paper results in mistakes.

I offer a different view.

At the introduction to my Medical Informatics teaching site I've defined good health IT and bad health IT as follows:

Good health IT ("GHIT") is defined as IT that provides a good user experience, enhancescognitive function, puts essential information as effortlessly as possible intothe physician’s hands, and facilitates better practice of medicine and betteroutcomes. 

Bad health IT ("BHIT") is defined as IT that is ill-suited to purpose, hard to use,unreliable, loses data or provides incorrect data, causes cognitive overload,slows rather than facilitates users, lacks appropriate alerts, creates the needfor hypervigilance (i.e., towards avoiding IT-related mishaps) that increasesstress, is lacking in security, or otherwise demonstrates suboptimal designand/or implementation. 
  

There are also good paper systems and bad paper systems.

I opine that the elephant in the living room of health IT discussions is that BHIT is infrequently, if ever, made a major issue in healthcare policy discussions.

I also opine that BHIT is far worse, in terms of diluting and decreasing the quality and privacy of healthcare, than a very good or even average paper-based record-keeping and ordering system.  

This is a simple concept, but I believe it needs to be stated explicitly. 

In today's healthcare world, where health IT is dominated by hyper-enthusiasts of one motive or another, such an axiomatic statement will probably be viewed as controversial if not heretical. 

This blog has numerous postings about health IT debacles, e.g., query links here and here, that could not occur with paper systems.  The defects of just one company's products, the only one that publicly reports them to FDA (link) are frightening in terms of potential consequences.

GHIT needs to be promoted and BHIT needs to be eliminated.  That implies a major transformation of the health IT industry and its oversight.

-- SS

HIMSS Senior Vice President on Medical Ethics: Ignore Health IT Downsides for the Greater Good

To contact us Click HERE
At a Sept. 21, 2012 HIMSS blog post, John Casillas, Senior Vice President of HIMSS Financial-Centered Systems and HIMSS Medical Banking Project dismisses concerns about health IT with the refrain:

... To argue that the existence of something good for healthcare in many other ways, such as having the right information at the point of care when it’s needed, is actually bad because outliers use it to misrepresent claims activity is deeply flawed.

Through the best use of health IT and management systems, we have the opportunity to improve the quality of care, reduce medical errors and increase patient safety. Don’t let the arguments of some cast a cloud over the critical importance and achievement of digitizing patient health records.

Surely, no one can argue paper records are the path forward. Name one other industry where this is the case. I can’t.

Let’s not let the errors of a few become the enemy of good.

The ethics of these statements from a non-clinician are particularly perverse.

The statement "Don’t let the arguments of some cast a cloud over the critical importance and achievement of digitizing patient health records" is particularly troubling.

When those "some" include organizations such as FDA (see FDA Internal 2010 memo on HIT risks, link) and IOM's Committee on Patient Safety and Health Information Technology (see 2012 report on health IT safety, link) both stating that harms are definite but magnitude unknown due to systematic impediments to collecting the data, and the ECRI Institute having had health IT in its "top ten healthcare technology risks" for several years running, link, the dismissal of "clouds" is unethical on its face.

These reports indicate that nobody knows if today's EHRs improve or worsen outcomes over good paper record systems or not.  The evidence is certainly conflicting (see here).

It also means that the current hyper-enthusiasm to roll out this software nationwide in its present state could very likely be at the expense of the unfortunate patients who find themselves as roadkill on the way to the unregulated health IT utopia.

That's not medicine, that's perverse human subjects experimentation without safeguards or consent.

As a HC Renewal reader noted:

Astounding hubris, although it does seem to be effective.  Such is PC hubris.  Who could ever call for reducing the budget of the NIH that is intended to improve health.  Has health improved?  No.

So why does a group with spotty successes if not outright failure never get cut?  It’s not the results, it’s the mission that deserves the funding.  So it’s not the reality of HIT, it’s the promise, the mission, that gets the support.  Never mind the outcome, it’s bound to improve with the continued support of the mission.

Is this HIMSS VP aware of these reports?  Does he even care?

Does he believe patients harmed or killed as a result of bad health IT (and I know of a number of cases personally through my advocacy work, including, horribly, infants and the elderly) are gladly sacrificing themselves for the greater good of IT progress?

It's difficult to draw any other conclusion from health IT excuses such as proffered, other than he and HIMSS simply don't care about unintended consequences of health IT.

Regarding "Surely, no one can argue paper records are the path forward" - well, yes, I can.  (Not the path 'forward', but the path for now, at least, until health IT is debugged and its adoption and effects better understood).  And I did so argue, at my recent posts "Good Health IT v. Bad Health IT: Paper is Better Than The Latter" and "A Good Reason to Refuse Use of Today's EHR's in Your Health Care, and Demand Paper".  I wrote:

I opine that the elephant in the living room of health IT discussions is that bad health IT is infrequently, if ever, made a major issue in healthcare policy discussions.

I also opine that bad health IT is far worse, in terms of diluting and decreasing the quality and privacy of healthcare, than a very good or even average paper-based record-keeping and ordering system.  

This is a simple concept, but I believe it needs to be stated explicitly. 

A "path forward" that does not take into account these issues is the path forward of the hyper-enthusiastic technophile who either deliberately ignores or is blinded to technology's downsides, ethical issues, and repeated local and mass failures.

If today's health IT is not ready for national rollout, e.g., causes harms of unknown magnitude (e.g., see this query link), results in massive breaches of security as the "Good Reason" post above, and mayhem such as at this link, then:

The best - and most ethical - option is to slow down HIT implementation and allow paper-based organizations and clinicians to continue to resort to paper until these issues are resolved.  Resolution needs to occur in lab or experimental clinical settings without putting patients at risk - and with their informed consent.

Anything else is akin to the medical experimentation abuses of the past that led to current research subjects protections such as the "Ethical Guidelines & Regulations" used by NIH.

-- SS

Hype, Spin and Health Care: the Case of an Apparently Failed Hospital Purchase by Steward Health Care

To contact us Click HERE
Health care is drowning in a sea of hype and spin.  We have frequently posted about deceptive marketing used to sell drugs, devices, and health care services.  We have also posted about deceptive public relations and lobbying used to sell policy positions and strategies favorable to health care organizations, and usually most favorable to their leaders.

Nevertheless, there rarely is much public skepticism about or criticism of such marketing and public relations messages when they appear.  Rather, often the media and other public voices, including those of politicians with power over the relevant public policy issues, seem to accept the messages at face value.

The Case of Steward Health Care and Landmark Medical Center

The Buy-Out Falls Apart

Therefore, it is instructive to look at examples of how such messages in retrospect appear to be fallacious, to use a polite term.  A local example that just popped into view was documented in two short news items by Felice Freyer in our own Providence Journal.  (Web access to a longer version story that appeared in the print version of the journal is here.)  The first item included,

The deal to sell Landmark Medical Center to Steward Health Care System may be falling apart.In a court filing this week, Jonathan N. Savage, the special master in charge of the hospital, made reference to the possibility that Steward would withdraw. The Boston hospital group faces a Sept. 30 deadline to complete the sale.

The Message Promoted by Steward Health Care 

We have blogged about the rapid expansion of Steward Health Care, despite the name, a for-profit company owned by private equity/ leveraged buyout firm Cerberus Capital Management. Steward has hyped its supposedly world class "new health care" model in its advertising (look here). In promoting its bid for Landmark, Steward's well-paid CEO (look here), displayed his vision for promoting the medical center through "economies of scale," "right-siting," and emphasizing ties with the community: "it's not a community hospital system. It's really a health care system," as reported by Felice Freyer in April, 2012 (Freyer F. Landmark Medical Center. A Leap into the unknown. Providence Journal, April 22, 2012.)

 In a dispute over payment rates with Rhode Island Blue Cross Blue Shield, Steward ran full-page newspaper advertisements claiming that insurance companies leaders issued an order to "terminate Landmark Medical Center," because they did not care if "residents would lose their only hospital, ... employees ... would lose their jobs, or the elderly ... would have to travel for care." (Look here.) That implied, of course, that Steward, which did not mention that it is a for-profit corporation owned by a private equity firm in the ads, cared deeply about the health care of residents of Woonsocket.

Some Skepticism, but More Acceptance

The article by Felice Freyer above did feature journalistic skepticism and include interviews with some local physicians who questioned whether Steward could possibly fulfill all its promises to simultaneously increase the quality of care and reduce costs.

However, the article showed that there was lots of positivity about Steward's track record in neighboring Massachusetts. Predictably, the President of Steward owned Quincy Medical Center boasted, "Not one person has been laid off. We have not reduced any service lines. Our focus is on enhancing." However, some people who were apparently independent of Steward also had favorable views.  A Massachusetts consumer advocate said "as far as we know, it's going fine." A Brandeis University Professor said, "it's impressive how successful they've been."

The Politicians' Buy In

Elsewhere, there were plenty of statements of support for Steward by local politicians.  The Mayor of Woonsocket supported Landmark (and implicitly Steward) it its dispute with RI BCBS, as reported by the Providence Journal, saying that the proposed buyout by Steward "is far too critical for our city, and I must take every step possible to ensure that the interests of the city and those who rely upon Landmark (Medical Center) for healthcare are being protected [by taking Steward's side in the dispute.]" Also, as reported by the Woonsocket Call, RI Congressman David Cicilline said, "I look forward to working with Landmark's new administration [that is, Steward] to ensure that it continues to deliver affordable, quality health care and well-paying jobs for hardworking Rhode Islanders." To fulfill Steward's wishes, The Rhode Island state legislature rushed to make its laws about for-profit conversion of non-profit hospitals more lenient (see the Providence Business News).

The Attorney General Later Says it was All About the "Bottom Line"

However, now Steward has apparently pulled out of the deal with nary a public mention of the reason why, much less demonstration of its concern for the poor people of Woonsocket. As reported in a second small item in the Providence Journal,

Steward Health Care System, which is apparently backing out of its deal to buy Landmark Medical Center, 'has left the hospital, its patients and its employees in a worse position,'

Attorney General Peter F. Kilmartin said in a statement today.'It has become very clear that Steward's only interest was the bottom line, not, as the Company claimed, the patients, the employees or the Woonsocket community,' Kilmartin said.

Summary

This is just one local kerfuffle about a small hospital system. However, looking at it in granular detail says a lot about how big health care organizations, like the one that here attempted to buy the local hospital system, push misleading messages to secure their private interests. These misleading messages often promote these organizations' commitments to the traditional health care mission, often in the modern argot of quality, access, and affordability), when their leaders may really care more about short term revenue. This case also shows how at least some local policy makers may be drawn in by such messages, and how the few skeptics get lost in the shuffle.

An important feature of the modern, commercialized, laissez faire health care system in the US is the role of opinion manipulation through modern, sophisticated marketing and public relations in promoting the short-term financial interests of health care organizations and their leaders at the expense of patient's and the public's health. This role seems rarely to be discussed, particularly in health care research and policy circles. It may be that some members of the public, health care professionals, and health policy makers are naturally skeptical of marketing and public relations hype, spin, and deception. However, we have seen too many examples of health care leaders promoted as "visionaries" who are anything but.

Health care professionals, patients, policy makers, and the public at large ought to be extremely skeptical of the self-serving messages packaged by marketing and public relations. Academics ought to be dissecting these messages more often. Skeptics need to make their voices heard.

Meanwhile, look out for the next "visionary," or the next "new health care" promotion. They may not turn out to be what is advertised.

UK: Another Example of IT Malpractice With Yet Another "Glitch" Affecting Thousands of Patients, But, As Always, Patient Care Was "Not Compromised"

To contact us Click HERE
At "my Dec. 2011 post "IT Malpractice? Yet Another "Glitch" Affecting Thousands of Patients. Of Course, As Always, Patient Care Was "Not Compromised" and others, I noted:

... as multiple posts on this blog [about health IT failures] have pointed out, the claims that "no patients were harmed" is both misleading and irrelevant:

Such claims of 'massive EHR outage benevolence' are misleading, in that medical errors due to electronic outages might not appear for days or weeks after the outage, depending on what information was corrupted/lost/misindentified/or otherwise mishandled after it is 'backloaded' once the system is up. All it takes is one med lost to cause misery and death. (I can speak about that from unfortunate personal experience.

Claims of 'massive EHR outage benevolence' are also irrelevant in that, even if there was no catastrophe directly coincident with the outage, their was greatly elevated risk. Sooner or later, such outages will maim and kill.

Here is a prime example of why I've opined at my Sept. 2012 post "Good Health IT (GHIT) v. Bad Health IT (BHIT): Paper is Better Than The Latter" that a good or even average paper-based medical record keeping system can facilitate safer and better provision of care than a system based on bad health IT (BHIT).

Try this with paper:

NHS 'cover-up' over lost cancer patient records

Thousands awaiting treatment were kept in the dark for five months when data disappeared

Sanchez Manning
The Independent
Sunday 30 September 2012

Britain's largest NHS trust took five months to tell patients it had mislaid medical records for thousands of people waiting for cancer tests and other urgent treatments. Imperial College Healthcare NHS Trust discovered in January that a serious computer problem and staff mistakes had played havoc with patient waiting lists.

It's quite likely the "serious computer problem" far outweighed the impact of "staff mistakes", as disappearing computer data does so in a "silent" manner.  One does not realize it's missing as there's not generally a trail of evidence that it's gone.

About 2,500 patients were forced to wait longer on the waiting lists than the NHS's targets, and the trust had no idea whether another 3,000 suspected cancer patients on the waiting list had been given potentially life-saving tests. Despite the fact that the trust discovered discrepancies in January and was forced to launch an internal review into the mess, including 74 cases where patients died, it did not tell GPs about the lost records until May.

That is, quite frankly, outrageous if true and (at least in the U.S.) might be considered criminally negligent (failure to use reasonable care to avoid consequences that threaten or harm the safety of the public and that are the foreseeable outcome of acting in a particular manner).

Revelations about the delay prompted a furious response yesterday from GPs, local authorities and patients' groups. Dr Tony Grewal, one of the GPs who had made referrals to Imperial, said doctors should have been told sooner to allow them to trace patients whose records were missing. "The trust should have contacted us as soon as it was recognised that patients with potentially serious illnesses had been failed by a system," he said. "GPs hold the ultimate responsibility for their patient care."

That is axiomatic.

The chief executive of the Patients Association, Katherine Murphy, added: "This is unacceptable for any patient who has had any investigation, but especially patients awaiting cancer results, where every day counts. The trust has a duty to contact GPs who referred the patients. It's unfair on the patients to have this stress and worry, and the trust should not have tried to hide the fact that they had lost these records. They should have let the GPs know at the outset."

Unfair to the patients is an understatement,  However, if one's attitude is that computers have more rights than patients, as many on the health IT sector seem to with their ignoring of patient rights such as informed consent, lack of safety regulation, and lack of accountability, then it's quite acceptable.

The trust defended the delay in alerting GPs, arguing that it needed to check accurately how much data it had lost before making the matter public. It said a clinical review had now concluded that no one died as a result of patients waiting longer for tests or care.

That would be perhaps OK if the subjects whose "data had been lost" through IT malpractice were lab rats.

Despite this, three London councils – Westminster, Kensington and Chelsea, and Hammersmith and Fulham – are deeply critical of the way the trust handled the data loss. Sarah Richardson, a Westminster councillor who heads the council's health scrutiny committee, said that trust bosses had attempted to "cover up" the extent of the debacle. "Yes, they've done what they can but, in doing so, [they] put the reputation of the trust first," she said. "Rather than share it with the GPs, patients and us, they thought how can we manage this information internally. They chose to consider their reputation over patient care."

As at my Oct. 2011 post "Cybernetik Ãœber Alles: Computers Have More Rights Than Patients?", to be more specific, they may have put the reputation of the Trust's computers first. 

Last week, it was revealed that Imperial has been fined £1m by NHS North West London for the failures that led to patient data going missing. On Wednesday, an external review into the lost records said a "serious management failure" was to blame for the blunder.

Management of what, one might ask?

Imperial's chief financial officer, Bill Shields, admitted at a meeting with the councils that the letter could have been produced more quickly. He said that, at the time, the trust had operated with "antiquated computer systems" and had a "light-touch regime" on elective waiting times.

Version 2.0A will, as again is a typical refrain, fix all the problems.

Terry Hanafin, the leading management consultant who wrote the report, said the data problems went back to 2008 and had built up over almost four years until mid-2011. Mr Hanafin said the priorities of senior managers at that time were the casualty department and finance.

Clinical computing is not business computing, I state for the thousandth time.  When medical data is discovered "lost", the only response should be ... find it, or inform patients and clinicians - immediately.

He further concluded that while the delays in care turned out to be non-life threatening, they had the potential to cause pain, distress and, in the case of cancer patients, "more serious consequences" ... The trust said it had found no evidence of clinical harm and stressed that new systems have now been implemented to record patient data. It denied trying to cover up its mistakes or put its reputation before concerns for patients. "Patient safety is always our top priority," said a spokesman.

"More serious consequences" is a euphemism for horrible metastatic cancer and death, I might add.  The leaders simply cannot claim they "found no evidence of clinical harm" regarding delays in cancer diagnosis and treatment until time has passed, and followup studies performed on this group of patients.

This refrain is evidence these folks are either lying, CYA-style, or have no understanding of clinical medicine whatsoever - in which case their responsibilities over the clinic need to be ended in my opinion.

I, for one, would like to know the exact nature of the "computer problem", who was responsible, and if it was a software bug, how such software was validated and how it got into production.

-- SS

New Book From Breast Cancer Sisterhood

To contact us Click HERE
I'd like to recommend a sweet new book, "Breast Cancer Sisterhood: A Guide to Practical Information and Answers to Your Most Intimate Questions" by Brenda Ray Coffee with co-author Barbra Swanson. 
Brenda is the founder of BreastCancerSisterhood.com and Barbra is a registered dietitian and doctor of naturopathy.I finished the book in one sitting, mostly because it's just 82-pages long.  But there's also something very compelling about Brenda's writing style that invites you in.  She draws on her own experiences (ten breast cancer surgeries and eight rounds of chemotherapy) to discuss everything from the obvious (side effects of treatment) to the unmentionable (how to self-lubricate for more enjoyable sex after cancer treatment).  Nothing is off limits.
One thing though: The authors cite no sources. That may be off-putting to some.  Still, there's lots of common sense in those 82 pages. By the time you're done, you'll feel like you've had a really great conversation with a very likable and knowledgeable new friend who enjoys nothing better than telling it like it is.
Brenda has also published, "The Breast Cancer Caregiver: Husbands & Heroes, A Guide to Help You and Thank You for All You Do." The 42-page book (or booklet) covers about half of the material that's in Breast Cancer Sisterhood (including identical text in some instances).  But Coffee changes her point of view and speaks directly to spouses or caregivers.  "I wanted to grab men's attention upfront," Coffee wrote me in a note.  "It's my hope they'll find some golden nuggets to make them better caregivers and role models and be present emotionally."   For women in treatment who need more support from their significant others, this little resource could be a big help.

Making the Cognitive Leap: Exercise is Good for 'Chemo Brain'

To contact us Click HERE
By Arash Asher, MD
Director, Cancer Survivorship and RehabilitationSamuel Oschin Comprehensive Cancer Institute Cedars-Sinai Medical Center, Los Angeles, CA

Fortunately, the scientific community has come a long way over the last several years in better understanding chemo brain, its causes, and how it can really impact a cancer survivor's life.  Unfortunately, we have much more work to do in learning about effective treatments for this problem.  
As a cancer rehabilitation physician who sees many patients struggling with chemo brain, I am very interested in finding ways to help the quality of life of patients with this problem.  I'd like to briefly discuss the possibility and benefits of using an old tool to help this newly recognized problem: EXERCISE.  
We all have heard about the many many benefits of exercise:  reducing heart disease, improving lung function, supporting our bones, strengthening our muscles, fighting depression, and on and on.  There is increasing evidence over the last decade that exercise may improve our memory and cognitive ability as well.  Nobody is exactly sure why exercise may improve our memory and cognitive ability.  Exercise seems to increase BDNF (brain-derived neurotrophin factor), which has been popularly referred to as the "fertilizer" of our neurons and helps improve the function and growth of our brain cells.  Exercise also improves the brain's blood flow, oxygen uptake, and glucose utilization (the main source of fuel for the brain) -- all ways that may explain exercise's benefits for our brain function  (Devine, 2009, "Physical Exercise and Cognitive Recovery in Acquired Brain Injury: a Review of the Literature"). 
Several interesting studies have demonstrated this idea (Colcombe, 2003, "Fitness Effects on the Cognitive Function of Older Adults: a Meta-Analytic Study").  In one study for example, healthy older adults were divided into two groups: one group participated in an aerobic exericse program for 6 months and the other only practiced a stretching regimen in 6 months.   At the end of the study, the aerobic intervention group performed much better in testing of their attention system, memory, and executive function.  
Perhaps even more interestingly, this study also included a functional MRI of the brain (which lights up areas of the brain that are activated) before and after the intervention.  They found that the aerobic exercise group actually showed improved activity in the areas of the brain responsible for attention and executive function, providing more concrete evidence that exercise actually changes the way our brains are wired and how well it functions  (Colcombe, 2004, "Cardiovascular Fitness, Cortical Plasticity, and Aging").
Other studies have  suggested that incorporating resistance training exercises (such as weight training) with aerobic exercises provides better results  than aerobic training alone (Smith PJ, 2010, "Aerobic Exercise and Neurocognitive Performance: a Meta-Analytic Review of Randomized Controlled Trials").
The major caveat of all the studies looking at exercise and memory: patients with chemo brain have NOT been studied yet.  Therefore, we can't assume that these benefits  are  generalizable to people with  chemo brain. But, given all the other benefits of exercise for cancer survivors that have been proven, I routinely try to outline a safe exercise program for all my patients having chemo brain symptoms.
For more information about the Cancer Survivorship and Rehabilitation Program at Cedars-Sinai Medical Center, click here or call (310) 423-2111.

Ten Years After Treatment & Still Struggling With Performance Anxiety & Depression

To contact us Click HERE
By CarolBoston, MAGuest Blogger
Ms. Davidson, Dr. Silverman,
Thank you so much for the book and the ongoing research.  My experience is similar to many patients you profile.  I'd like to offer some additional concrete examples that I've observed.
First, quick background - Br Ca Stage 2 ductal carcinoma treated with mastectomy, radiation, 8 rounds of chemo (Adriamycin, Taxol) followed by tamoxifen, then Femara.  I was fortunate to be treated at the wonderful Faulkner Breast Center in Boston (now connected to Dana Farber).  I'm 52 and ten years out of treatment; physically, I feel great. 
As the radiation effects lifted, I came out of my major fog.  No longer did it take 45 minutes just to write the grocery list only to be overwhelmed by the cereal choices!  I worked as a senior manager throughout my treatment and started to feel I was getting my mojo back.  But, the fog has not completely lifted even 10 years later.  As someone who has been 'sharp as a tack' her whole life, this has brought on depression and performance anxiety.I often say, "yesterday" when I mean, "tomorrow" and vice versa. When writing, I sometimes start in the middle of a word (e.g. the 'p' of Maple St.; then I go back and add the "Ma").
I now have trouble with maps and directions when previously I didn't need a map.
Packing for a trip is extremely difficult as I can't 'plan out' what I will need.
I have trouble mapping out a strategy for my department at work.  I struggle to figure out the higher level actions vs. the details. Reading the newspaper is very hard.  I often can't comprehend the first paragraph if the content is new to me.
Most challenging is the effort I must put in on everyday tasks.  It takes longer to process thoughts and make decisions.  And no one knows how much I struggle internally.  
Thank you for the ideas in the book.  I have already incorporated many of these.  I also practice yoga and meditation, which has helped me live 'where I am'.
Carol

Michael Sieverts' Tips/Tricks to Recover Your Life

To contact us Click HERE
My friend, Michael Sieverts, is a 10-year brain cancer survivor, a highly respected patient advocate, and a qi gong instructor for the Cancer Support Community. He is exceptionally well-read on the topics of brain health and cancer-related cognitive decline. ID

Michael Sieverts

By Michael Sieverts

This is a handout for the “Chemobrain” panel I moderated on February 21st at the Cancer Support Community-Benjamin Center. From my introduction that evening:

This is an incredibly important moment in the history of cancer treatment, and we appear to be at an inflection point in terms of understanding the multitude of diseases we refer to collectively as cancer. A good deal of the excitement has to do with scientificbreakthroughs in new imaging refinements, a greater understanding of genetics and the merging of math, chemistry, biology and physics. Young scientists aren’t staying in one discipline any more, instead they take up careers such as, “computational biologist,” and collaborate across disciplines.
But the other area of enormous progress, which is emerging as we speak, is the voice of the patient—our voice. As medicine becomes more collaborative, as we access our own information on the web and through other sources, and as we start talking to EACH OTHER and acquiring a collective intelligence, we have within our grasp the tools to take the entire enterprise to a whole different level.
This is not merely consistent with the mission of the Cancer Support Community—it IS the mission: that by becoming an active participant in your fight for recovery, along with your healthcare team, you’ll have a better quality of life.
One thing that’s important to keep in mind is that THIS IS A NICE PROBLEM TO HAVE—because by definition, having chemo brain is an indication that you’re alive. This is not a small victory, considering how many of us are here tonight despite having illnesses that not so long ago were characterized as “invariably fatal.” What a luxury, at one level, to have the focus shift from “how do I stay alive” to “how do I have a good quality of life?”Michael’s Tips and Tricks to Recover Your Life
Even though these tips and tricks are divided into categories, there are actually no real divisions. When you go to a support group, for example, you acquire important and relevant medical information about your illness. When you go to an exercise class, you get support from the other class members and improve your cognition. When you meditate, you gain calmness and increase your focus. And so on.
If I had to limit myself to one sentence of advice, I’d be hard-pressed. But here goes: pay close, moment-to-moment nonjudgmental attention to what’s happening in you and around you, get and stay healthy, get support, claim your strengths without obsessing about what you perceive as your failings, and be grateful and peaceful whenever you can manage it.
I highly encourage you to seek out people to support you in the process, people who have gone through what you’re going through—their advice and support is invaluable. If your illness is so obscure or rare that you can’t find other survivors locally, use the Internet to locate others—just about every disease has its own community at this point. That’s how you’re going to find the right treatments and right doctors—the good doctors get better results.
Techniques to Build Cognition:
● Build your memory: challenge your brain by learning a new language or a musical instrument. Doing crosswords and Sudoku are fine, but the skills involved don’t seem to translate to tackling other kinds of tasks.
● Keep your mind active—keep a journal, read literature and poetry, go to concerts and museums and lectures.
● Be actively involved in your medical treatment. Research and understand your illness—become a partner in your recovery with your medical team, stay current on advances in the field, join the e-patient movement.
● Research which parts of your brain are not functioning well, because that will inform you about where to direct your recovery effort.
● Find the best doctors for your specific illness, and then make them look like geniuses by having the best recovery possible.
● Find gentle ways of challenging yourself, look for your true talents—your gifts will always be your gifts, in my experience.
● Practice—aim for continual improvement and develop good habits.
● Treat your attention as a valuable resource, spend it wisely.
“Ever try. Ever fail. No matter. Try again. Fail again. Fail better.” – Samuel Beckett

Reading List and Web Resources:
Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Dan Silverman, MD, PhD, and Idelle Davidsonwww.YourBrainAfterChemo.blogspot.com
Brain Rules: 12 Principles for Surviving and Thriving at Work, Home, and School by John Medinahttp://www.brainrules.net/
The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science (Null) by Norman Doidge
The Memory Bible: An Innovative Strategy For Keeping Your Brain Young by Gary W. Smallhttp://www.semel.ucla.edu/longevity
The Body Has a Mind of Its Own: How Body Maps in Your Brain Help You Do (Almost) Everything Better by Sandra Blakeslee and Matthew Blakeslee
The Better Brain Book by David Perlmutter and Carol Colmanhttp://www.powerupyourbrain.com/
Incognito: The Secret Lives of the Brain by David Eaglemanhttp://www.eagleman.com/
SAT Question of the Day:http://sat.collegeboard.org/practice/
Word a Day:http://wordsmith.org/awad/
Seek out intelligent discussions:TED talks:http://www.ted.com/talks
Google Talks:http://www.youtube.com/user/AtGoogleTalks
Poptech Talks:http://poptech.org/
e-patient movement:http://e-patients.net/
Charlie Rose’s Brain Series:http://www.charlierose.com/view/collection/10702

Compensation Strategies (adapted from “Your Brain After Chemo”):
● Stay present. Remind yourself to focus. Learn to meditate, and to pause before you take an action.
● Prioritize. Don’t think that you can multitask and perform. Do fewer things and do them well. What you decide not to do might be as important as what you actually decide to do.
● Develop routines. Keep the same daily schedule as much as possible. Prepare for the day the night before by reviewing your calendar. Exercise and eat at regular times, use a divided pillbox to remind you to take your medications properly.
● Rehearse. “Repeat to remember” to improve short-term memory, “remember to repeat” for longer term memory.
● Tell yourself stories about the person you just met. Say the name out loud, ask them to spell it, remark on the similarities to a celebrity’s name, or to someone else you know with the same name.
● Use word associations and rhyming. This increases the impact of a name or address on memory.
● Cue the senses.
● Break numbers into chunks.
● Don’t use scratch paper. Instead use a single notebook.
● Use a paper daily planner to write down all your activities, even movies and chores—and remember to look at it. You remember things better when you write them by hand than if you type them on a keyboard.
● Use your planner to keep track of your memory problems and other symptoms, so you can discuss changes in your condition with your doctor, who’s going to want to know what happened and when. Do not ignore symptoms, regard them as a blessing, if they lead you to solving a problem earlier than later.
● Everything in its place. Always put keys, checkbook, cell phone and wallet in exactly the same places. Start regarding your purse or backpack as a system.
● Chew gum, yawn—increases oxygen flow to the brain.
● Retain a sense of humor—it’s lighter than you think. Self-forgiveness is an important way to “get over it.”
● Sometimes something that seems terrible can be viewed from a different angle, and regarded as not only not so serious, but maybe as a benefit—and possibly as a great benefit.
Manage your technology:
● Use email to make a data trail of conversations and commitments, and ask family and friends to sign on too to this method of communicating.
● If you have a task to accomplish, don’t respond to every email as it comes in—look at them and respond to them in batches.
● Manage the phone—don’t answer unless you know who it is and it’s someone you want to talk to at that moment. Use anonymous call blocking, caller ID, and an answering machine to screen calls.
● Minimize television viewing, especially TV news.
● Don’t expect a smart phone to replace a computer—it’s too hard to read attachments on a phone, you don’t retain the information the same way.
● Use your computer’s alarm functions to remind you to do certain tasks—moving the car for street cleaning, for example, or picking up kids.
● Leave messages for yourself as reminders. Call your own answering machine.
● Use a timer when cooking, stay near the stove when it’s on, don’t wander away from the kitchen.

Driving:
● If you drive a car, be aware that cognitive deficits don’t make you a better driver, and that a car is a weapon to bicycles and pedestrians.
● Drive carefully, on familiar routes, being patient and generous with other drivers.
● Allow enough time or permit yourself to be slightly late—“caught in traffic” is a completely valid excuse in LA.
● If you are feeling iffy about your cognition—we can often tell when we’re not 100%--either stay home or, if you’re out, drive slowly and carefully home.
● Drowsiness is a cause for red alert—pull over immediately.
● Learn the bus system, let professionals drive you where you need to go.

Reading List and Web Resources:
Getting Things Done: The Art of Stress-Free Productivity by David Allen
One Small Step Can Change Your Life: The Kaizen Way by Robert Maurer

Meditation:
There are many forms of meditation, and choosing one over the other is a matter of personal preference. I happen to like mindfulness-based meditation, as promulgated by Jon Kabat-Zinn—the tone of his advice is just right for me and many others, but it might not be for you, you might prefer a meditation technique that utilizes a mantra, like Transcendental Meditation, or any of the other forms. No matter—you can use any one of them to deeply explore your consciousness.
The key thing to remember is that learning to be in the present, in the now, is both utterly simple and very challenging. It can take a lifetime to learn. Even the Dalai Lama says that he’s still learning.
There’s a reason they call it a practice:
When we are giving ourselves the experience of being relaxed, calm, alert and objective, we are practicing and perfecting mindfulness. When we are being tense or angry or anxious, we are practicing and perfecting being those states as well—BUT, if we are observing that we are going to those places while we’re doing it, we have the opportunity to take ourselves back to the relaxed place. It’s ultimately about cultivating an inner strength.
I’ve heard the distinction made between prayer and mediation is that when you pray you’re talking, you’re asking for something—and when you meditate you’re just listening. Some people call it “falling awake.”
There’s a huge body of literature, and courses offered everywhere, many for free.
You can study in classes, and go on retreats, which are great, but ultimately the idea is to be able to live your whole life with a mindful aspect. As my teacher says, “lead an ordinary life and make changes from within that life.”
Don’t let your environment throw you off, cultivate inner strength and the ability to not let your mind wander.

Reading List and Web Resources:
Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn  (You can Google Jon Kabat-Zinn for tapes, CD’s and online videos)
The Heart of Understanding: Commentaries on the Prajnaparamita Heart Sutra by Thich Nhat Hanhhttp://www.plumvillage.org/
When Things Fall Apart: Heart Advice for Difficult Times (Shambhala Library) by Pema Chodron
Fingerpainting on the Moon: Writing and Creativity as a Path to Freedom by Peter Levitt


Exercise/Sleep (adapted from “Brain Rules”)
Exercise:Properly done to avoid depletion and injury, exercise is one of the best things you can do for your cognition. Early human brains developed in almost continuous motion, hunting and gathering food, walking vast distances daily. Only recently have we become physically idle.
All exercise increases blood flow and oxygen levels. Increased oxygen to the brain is associated with improved cognitive function. Exercise rids the body of stress chemicals, and boosts brain power. It cuts the risk of dementia in half.
My observation is that the healthier you are, the easier it is to survive the treatments. If you have the “luxury” knowing that a treatment or procedure is imminent (as opposed to requiring an emergency surgery), prepare yourself by getting as strong as possible. Train as if you’re training for a triathalon, you’ll need all the strength you can muster.

Your regular exercise:● Exercise daily, but not necessarily vigorously—at least 30 minutes, out in natural light and fresh air when feasible.
● Power walking, swinging light weights in your hands to involve your upper body, is a great way to get exercise. Human brains evolved as we walked great distances, and it remains the best all-round exercise.
● Gentle yoga, Feldenkrais, Qi Gong—explore to find the ones that work best for you.
● Any exercise that makes you feel light—that’s the right one for you.
● Avoid exercise that depletes you, which is bad for your immune system.

Sleep:Sleep is incredibly important, for cognition, for the immune system, for mood and happiness, so develop good sleep hygiene. Avoid going deep into sleep debt—accumulating consecutive nights of short sleep. “You can’t be healthy if you’re not getting good sleep”:
● Go to bed at a regular time, preferably before 11pm.
● Avoid stimulating activity for the few hours before bed, prepare.
● Avoid eating before going to bed.
● Don’t watch television, or work on a computer in bed.
● Use relaxation techniques to help yourself fall asleep.
● Use the bedroom only for sleeping and sex, not for eating or working.
● Keep the bedroom dark—light interferes with the functioning of your pineal gland.
● If you are occasionally unable to sleep, don’t stress about it, get up for a little while and do something else, preferably not too stimulating.
● If you feel drowsiness, be extremely careful, you literally could fall asleep in a heartbeat—do not drive!
● If you’re having regular trouble sleeping, see a specialist.

Reading List and Web Resources:
Spark: The Revolutionary New Science of Exercise and the Brain by John J. Ratey and Eric Hagerman
The Way of Energy: Mastering the Chinese Art of Internal Strength with Chi Kung Exercise (A Gaia Original) by Kam Chuen Lam
The Promise of Sleep: A Pioneer in Sleep Medicine Explores the Vital Connection Between Health, Happiness, and a Good Night's Sleepby William C. Dement and Christopher Vaughanhttp://www.bettermovement.org/author/toddhargrove/

Nutrition (adapted from “Food Rules”):
Eating should be a source of pleasure. The reality is that we’re omnivores, and people have been thriving on a wide variety of diets for millenia. Michael Pollan says that the field of nutrition today is like the field of surgery in 1650—promising, and interesting to watch, but not yet deserving of our total trust. The popular press has made a total hash of the field of nutrition by using the latest headlines to sell papers— findings which gyrate wildly. Margarine, fats, carbohydrates, —sometimes they are the villains, causing all sorts of health problems—then they regain or fall out of favor. And the government is under the sway of the agriculture and food lobbyists; federal dietary guidelines and recommendations are compromised and getting worse.
But don’t stress too much, it’s not difficult to make good food decisions, especially now. Make sure to enjoy yourself, to make eating a pleasurable, slow, and social, function. Follow some simple guidelines, and use your self-awareness to inform you whether what you’re choosing to eat is helping you or causing you setbacks.
Whenever feasible, do your own cooking with organic, local, seasonal, sustainable fruits and vegetables. (Support farmers and the local economy with your money—you are voting for a healthful food system.) Not only can you control the ingredients and the cooking methods, but you are taking an active role in your fight for recovery. Plus you will save money by not eating out. It’s estimated that as much of 2/3 of the cost of medical care in this country is attributable to our poor eating habits. Cooking is a profound way to influence your health: “The best public health tools are a sharp chef’s knife, two cutting boards and a salad spinner.” (Preston Maring, MD, associate physician-in-chief at Kaiser Permanente Oakland)
Restrict wheat, dairy and try to eliminate sugar—but aim for “90-10”: allow yourself some small indulgences to retain feelings of pleasure, since mood affects how you digest. A happily-enjoyed burger is probably providing better-absorbed nutrients than an organic raw kale salad that you are forcing down. Savor what you eat.
Other rules:
● Don’t eat food that comes through your car window.
● Read labels-- avoid foods with sugar (or sugar equivalent) as one of the first 3 ingredients.
● Avoid food with more than 5 ingredients, or made with ingredients you wouldn’t plausibly have in your pantry.
● Junk food is fine if you make it yourself. If you had to clean up after every batch of French fries, you’d rarely make them.
● Get the best ingredients, from farmers if possible. If you shop in supermarkets, buy only on the perimeter—it’s where they put the freshest food.
● Eat until you are satisfied, not full.
● Don’t feel like you have to finish what’s on your plate.
● Don’t go back for seconds.
● Spend more on ingredients, but eat less.
● Transparency is important—don’t buy from vendors who are secretive about where their food comes from. 
● Local non-organic is better than organic from long distances—foreign agricultural practices are unregulated.
● Eat food in season—it tastes better, has traveled less.
● Eat a rainbow of plant foods—the phytonutrients in the colors are very healthful.
● Spend at least as much time eating a meal as it took to prepare it.
● Try not to eat alone.
● Break the rules occasionally.

Reading List and Web Resources:
Anticancer, A New Way of Life, New Edition by David Servan-Schreiber MD PhD
What Color Is Your Diet? by David Heber
In Defense of Food: An Eater's Manifesto by Michael Pollan
Food Rules: An Eater's Manual by Michael Pollan and Maira Kalman
Dr. Jeanne Wallace:http://www.nutritional-solutions.net/

Attitude/Belief/Support:
Last but not least: the goal is not to live forever, nor to return to an old place, but rather to transform ourselves into healthy people, utterly at peace with ourselves, our families and our friends. Create a tradition of peacefulness:
● Feel gratitude
● Forgive yourself, lighten up, and loosen your grip. Find some humor in your situation.
● Cycle through the Mel Brooks catalog and other comedies.
● Connect to others, don’t try to keep everything internal. Cultivate relationships with those who support your healing process and your medical choices.
● Be aware of whether someone is being helpful or not—and if not, find a way to marginalize and ignore them.
● Develop an immune-competent personality, monitoring and taking care of your own needs, and resisting becoming a self-sacrificing martyr.
● Reduce your anger, stress and anxiety.
● Don’t do anything you hate doing—if it’s something that you have to do, find a way to re-frame it so that you’re not flooding your system with stress hormones.
● Use your illness as a teacher—what it can tell you about medicine, about compassion for yourself and others, and about how to care for yourself.
● An illness is a terrible thing, but with the right attitude it might be a benefit—and it might wind up being the best thing that ever happened to you.
● Find your true talent, discover your purpose in life. Why have we been put here?

Reading List and Web Resources:
Man's Search for Meaning by Viktor E. Frankl
A General Theory of Love by Thomas;Amini, Fari;Lannon, Richard Lewis
Cancer As a Turning Point: A Handbook for People with Cancer, Their Families, and Health Professionals by Lawrence Leshan
Wellness Community Guide to Fighting for Recovery from Cancer by Harold H. Benjaminhttp://www.cancersupportcommunitybenjamincenter.org/
http://www.simmsmanncenter.ucla.edu/

I’d like you to keep in mind Raymond Carver’s last poem:
Did you get what you wanted from this life, even so?
I did.
And what did you want?
To find myself loved,
To feel myself loved, on this earth.
Stay in touch with your loved ones, radiate peacefulness, and stay part of the conversation.
michael

(Michael Sieverts' Blog)

Navigating Through 'Chemo Brain'*

To contact us Click HERE

By
Idelle Davidson
Does any of this sound familiar? You’re halfway through what will be six rounds of chemotherapy when you notice a dense fog rolling over your brain. You grow forgetful. The responsibility of making even small decisions overwhelms you. You find multitasking impossible; good luck completing any task at all. Driving shatters your nerves; you’re disoriented, no longer sure which direction is home. You lose your keys, your glasses, your cell phone, and realize with a panic that the kids are waiting for you at school. You haven’t a clue where you parked your car. You leave water running in the sink and food burning on the stove. You struggle to retrieve words (you know it begins with a “ka” or “ch” sound and it’s oh so close, right there on the tip of your tongue). Ditto for numbers. You pick up a book and put it down because after the first paragraph, you have no idea what you just read. You avoid social situations because you can’t follow the thread of a conversation. And you wonder, what is happening to me?

If you can relate, then chances are you’re experiencing what researchers refer to as “cancer or cancer-treatment-related cognitive impairment,” also known as, “chemo brain,” or as I like to say, “Where the hell is my memory?” You’re not alone. In fact, among lymphoma and breast cancer survivors where there’s the most data, up to 80 percent of people who undergo chemotherapy report some amount of cognitive impairment. For some, the condition is fleeting. For others, it may last for years.

Undoubtedly you’re concerned. So talk to your oncologist and gather as much information as you can. In the meantime, although there is no cure or prevention as yet for chemo brain, here are some strategies that may help:

1) Ask for a referral to a neuropsychologist who should be able to evaluate your language, motor, and sensory and visual-spatial skills as well as how you reason and process information. This is an especially good idea for people who have not yet begun treatment but are worried about the cognitive fallout and want to establish a baseline. Whether you’re newly diagnosed or not, a neuropsychologist can monitor you over time and work with you to strengthen any areas of weakness.

2) Seek out emotional support. It’s well-established that depression and stress also can cloud memory (neuropsychologists screen for that too), not to mention that they wreck havoc on your sense of well-being. So do what you can to lighten your emotional load, whether that means joining a support group, practicing meditation or yoga (both fabulous stress-reducers) or consulting with your doctor about the pros and cons of antidepressants.

3) Other prescription drugs may help with focus. Talk to your doctor about Provigil, Ritalin and other stimulant pharmaceuticals.

4) Exercise your body. Swim, walk, join a gym. Physical exercise increases cerebral blood flow and promotes the growth of brain cells. It is probably the number-one best natural stress reducer as well.

5) Exercise your mind. Work at reading that book (even if it takes you three times as long as anyone else), learn a dance routine (in small chunks if that's what works), try your newspaper’s daily crossword puzzle, take up piano, look into some of the commercial cognitive rehabilitation games. The “no-pain, no-gain” adage applies to the mind as well.

6) Eat healthfully. Cut out the junk. Focus on lean proteins and a colorful assortment of vegetables (especially dark leafy greens) and fruits that nourish the brain. Avoid saturated fats (cheese, whole milk, lard, butter, fatty animal products) and trans-fats (in some fast foods and baked goods such as pie crusts, donuts, crackers, etc.) that can clog arteries and cause poor blood flow to the brain (there’s a reason trans-fats are banned in a few states). Omega-3 fats are the good guys (wild salmon, fish oil supplements, herring, flaxseeds, chia seeds, walnuts, etc.). Researchers believe they improve mood and protect against inflammation and cognitive decline. 

7) Laugh.  Laugh a lot.  Humor really does help bring the world into focus and that's an especially good thing for people with chemo brain.
* [Note: A version of my post appears on the Navigating Cancer Survivorship blog. NCS is a national nonprofit organization connecting people to cancer survivorship resources.]

Chemo Brain May Last 5 Years or Longer After Stem Cell Transplant

To contact us Click HERE

Hi Everyone,
There's new research out, this time from Fred Hutchinson Cancer Center.  Karen Syrjala, PhD, and her team of scientists have found that patients who have undergone chemotherapy prior to receiving stem cell or bone marrow transplants to treat blood cancers, may suffer from some symptoms of chemo brain that are far more severe and long lasting than has generally been reported.
Although the 92 patients involved in the five-year study improved in some areas of cognitive functioning (multitasking, information processing, decision making), almost half showed no improvement in verbal learning and retention (word recall, sequencing of numbers and letters), or in motor dexterity (inserting toothpick-sized pegs into holes as quickly as possible).
Their findings have been published in the Journal of Clinical Oncology (May 2, 2011 online edition).  To read the journal abstract, click here.
Other articles about this study:
Press release: Fred Hutchinson Cancer Research Center
New York Times (Tara Parker-Pope on Health)
Science Daily

Thanks so much to those of you who think of me when you come across an interesting article or study about chemo brain.  I appreciate the links and all of your emails!  Keep them coming!

-- Idelle 

Learning Ukulele Has Helped My Memory

To contact us Click HERE

By Lori Nakamura
Aiea, Hawaii

I was 39 years old when I was diagnosed with triple negative breast cancer. I went through 5 cycles of chemo, and still today endure the lingering effects of chemo brain.

Fortunately, I have a friend who told me about the Hands On Healing program. She explained that Roy Sakuma Ukulele Studios offers free lessons to cancer survivors. Adding to the joy of learning to play the ukulele, my two daughters were able to sign up for lessons as well. Next month makes two years since we've taken up ukulele, and it will be 5 years since my surgery and treatments.
My daughters and I are in different classes, but at home we'll often practice and play music together. It's hard to explain, but when I'm playing the ukulele, I seem to forget about everyday worries -- it's so soothing and comforting. After playing, I feel more relaxed.

The idea behind the Hands on Healing program is to help us forget about cancer for a little while, and it really does help. The physical and mental scars are a daily reminder of what we've been through, but the program let's me focus on learning new songs, and I know the process is helping with my memory. Every time I learn a new song, I feel it is helping my brain to heal.

My husband just loves listening to us play. I think it must be more difficult for the co-survivor to see a loved one going through something painful. Sometimes when our girls and I are playing, I'll look up and see him enjoying the music, and I can see the appreciation in his eyes and smile -- it's an appreciation of the music and of life.

There are a lot of negative things that come with battling cancer. But as with everything in life, there are powerful positives. Roy and Kathy Sakuma and the Roy Sakuma Ukulele Studios have given me and other cancer survivors a special gift. Every week we get to open a new gift, learn a new song, relax with the music, and heal just a little more.

How to Advocate for Your Chemo Brain Care

To contact us Click HERE
By Heather Flanagan, ARNP-CGuest Blogger

Heather Flanagan is a board certified nurse practitioner in a private practice in Tampa, Florida. She completed her master's in nursing at the University of Florida in 2007
and has specialized in breast surgical oncology since 2008. Heather founded My Breast Cancer Answers just recently to provide support and resources for her patients and others.
The site includes printable checklists to bring to your doctors' appointments, important facts, news, a blog and a chat forum. Visit her at www.mybreastcanceranswers.com.
Chemo brain is something I had always heard about as an oncology nurse, but at first I thought it was just a cute little term coined for the forgetfulness people experience as part of their hectic treatment. I am embarrassed to admit it wasn't until last year when I realized how many women suffered from it.

There are many women I see at the office who complain of mental fogginess, forgetfulness, and difficulty working after chemotherapy. I've learned that many do not even realize they have chemo brain and the ones who do realize it, have a very difficult time seeking care for this condition. Others would have remained silent had I not brought up the subject and asked the right questions.

As a nurse I want to make sure my patients are getting what they need, so I try to recognize conditions or problems they may have as a result of their surgery and/or treatment. Unfortunately, most healthcare providers will only address a condition if you bring it up to them, so you must learn to advocate for yourself.

Chemo brain is so different because it is much like chasing a ghost. You know you see the phantom, but when you try to explain it to others, it is invisible. A phone call I received a month ago was what really prompted me to write this post. A woman, who is not a patient of mine, called my office desperately seeking advice for her chemo brain symptoms. She indicated she was unable to work, but could not find anyone to help her qualify for disability based on chemo brain. I realized at this point that I did not know enough about chemo brain and thus began my ghost hunt. I'd like to share with you what I've learned.

I understand the majority of you reading this blog are well versed in chemo brain and I know that many of you have read Idelle and Dan's book, "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus." I don't want to leave anyone out though, so I will include some basic knowledge.

What is chemo brain?
Technically speaking, chemo brain is a set of symptoms experienced by people after going through chemotherapy. The symptoms involve memory loss, forgetfulness, foggy thinking, etc. Chemo brain may last for several months or even years in some cases and symptoms vary greatly from person to person in both presentation and severity.

While all this seems fairly simple, many healthcare providers either do not know about chemo brain or feel it does not really exist. The dilemma for those affected is how to get help when their doctors don't believe it's a real diagnosis. If you're a newbie to chemo brain you may want to refer to this list of common symptoms.

What You Can Do
The first step is to make your ghost visible to your healthcare provider by listing your symptoms.

The second step is to keep a log/journal for a month starting from when the symptoms began. This will help you and your doctor see frequency and what aspects of your life are affected most. You may be surprised by how often symptoms interfere with your daily activities! Also, a healthcare professional will have a harder time dismissing your claims if you have your symptoms written down in an organized way.

Last, your journal will serve as legal documentation should you need it for disability.

Did you know that many people affected with chemo brain still score normally on cognitive tests? As a result, this condition may be diagnosed only after your doctor rules out other factors. Some other causes for your forgetfulness, foggy thinking etc. may include: anemia, hormonal changes associated with menopause, insomnia, and depression. These conditions may make chemo brain worse if they are present. Make sure to meet with your healthcare provider to have blood tests to rule out anemia and see if you are in menopause. You may find it helpful to keep track of number of hours you sleep per night and any difficulty you have sleeping. Consider taking a quiz to see if you could be depressed.

Seeing a Neuropsychologist
You will want to see a neuropsychologist, a person who specializes in treating conditions where memory and thinking are affected, to help you cope with chemo brain and get your life back. Ask your doctor for a referral.

A neuropsychologist may recommend stress relief techniques, coping strategies, cognitive exercises and tracking what makes your memory problems worse. Having chemo brain can be stressful and stress can lead to memory problems. You can help break this cycle by making sure you are nourished, rested, and well-organized prior to any stressful event.

Supplements and Medications
There are no supplements or medications specifically approved to treat chemo brain but some experts recommend Omega 3 fatty acids. Talk to your doctor about this. Some medications prescribed for other conditions may help as well. These include: Ritalin and Concerta used to treat attention-deficit/hyperactivity disorder (ADHD); Aricept, which is a medication for Alzheimer's; and Provigil, used to treat sleep disorders. You'll find a complete list in "Your Brain After Chemo."

Remember, the squeaky wheel gets the grease, so bring up your symptoms and discuss chemo brain with your healthcare provider. You are, after all, your best advocate.

Make sure you check out www.mybreastcanceranswers.com for all the latest and greatest in the breast cancer world. We look forward to having you as a part of our community!

Your Friend,

Heather
Founder, My Breast Cancer Answers

Additional Resource: Mayo Clinic