Articles of Interest This Week

CBC

Cancer

In The simple act of truth in the face of incurable cancer, Elaine Waples speaks powerfully of what is important when faced with knowing that one will die. It all comes down to the people one loves. Quote:

The hard things that tug at the heart and create the pain are the unbearable truths to parents that they will lose a child; to siblings that the person they’ve known their entire lives will be gone; to children that they must overcome and move on. They convey a clear and undeniable message to doctors that they must relinquish the desire to salvage, fix and prolong.

In a similar vein, a doctor recalls how sharing his loss helped a patient come to terms with the terminal illness of her husband in Sharing my loss helped a patient’s loss.

This story surprised me: Suicide rates may be higher in stem cell transplant recipients, detailing the results of a massive European study of close to 300,000 stem cell recipients (both auto and allo). Delving into the details, some of the findings are more understandable: higher suicide rates among those suffering from GvHD, and higher relapse rates among those who have attempted suicide. But the overall findings still surprise me given the awe, wonder and gratitude that most of us feel when given another chance at life.

Hard to believe, but More Than a Quarter of Melanoma Survivors Skip Sunscreen, Study Finds. While the experts try to find excuses (more education needed, perhaps tanning is addictive), I am more drawn to a simpler explanation: human stupidity.

A good overview of progress in cancer research and treatment by Dr. Len Lichtenfeld of the American Cancer Society, more optimistic than usual, in Is Cancer Research and Treatment Moving From Evolution To Revolution?

A good piece in Le Devoir by Marika Audet-Lapointe, Libre-opinion – Cancer: abandonnons les métaphores guerrières:

Alors, s’il y a lieu de livrer un combat, d’accord, j’accepte, et je revendique le droit de la personne touchée par le cancer de choisir sa façon de composer avec le défi du cancer. Que chaque personne puisse vivre sa vie jusqu’au bout, comme il le souhaite. Qu’une fois rendu au bout du sursis que représente la vie, il puisse se tourner vers son miroir intérieur et se dire avec un grand sourire : « Combien de montagnes, de lac et de défis j’ai surmontés, et combien je suis heureux et fier de porter en moi la certitude d’avoir savouré la vie, ma vie, en harmonie avec mes valeurs et mes convictions. »

Jim Salwitz shares how he and other oncologists deliver bad news in How doctors give bad news, and puts it into perspective:

This takes us back the vital question asked by my friend; how does a doctor prepare emotionally to give bad news? I think the answer is that the physician prepares by getting ready to do his job well. If he does a good job delivering the bad news, than he has helped the patient and family move forward in a difficult time of their lives. Done well, this is satisfying and important work. While at times it can be sad and even tragic to work with patients who are experiencing overwhelming health events, if the doctor can guide them through such times, then some element of suffering can be avoided. The healing of suffering, giving the chance to cope and preserving hope, gives every doctor peace and solace.

Health and Wellness

Nearly 25% of nurses wouldn’t recommend their hospital reports on a survey of Canadian nurses. While the figure is alarming (somewhat attenuated that almost 90 percent think safety measures are adequate), I wonder whether if you asked nurses what alternative hospitals they would recommend if they would be able to come up with an answer (we generally know our own environment, strength and weaknesses, not other environments). It also tells me, which I already know, that nurses, like doctors, are always dissatisfied with the quality of care they can provide, a good sign as it helps prevent complacency and mistakes.

A more useful survey is CBC rates 10 hospitals best in Canada, as it provides hospital ratings. Of course, the rating system used can bias the results, but transparency does focus the mind on where improvements may be required. I checked out the ratings for The Ottawa Hospital (where I received my care) and it received a B. I would rate it higher for the cancer care I received; interestingly, it received highest ratings for being patient friendly.

Experts blast Health Canada’s approach to sodium reduction points out that voluntary guidelines without transparency and monitoring are likely to be little more than symbolic with little effectiveness. Another critique of government policy comes from André Picard in Tories deliver a hollow boast on health-care spending, noting how federal health policy has weakened a national healthcare consistency and delivery.

My Name is Roger, and I’m an alcoholic is about Roger Ebert’s experience with AA and how it helped him (and others) with his alcoholism, and a reminder of just how powerful support groups can be.

Lastly, Getting a Brain Boost Through Exercise reminds us of the importance of exercise to reducing memory loss and improve cognitive function, ideally through a mix of aerobics and strength training.

Other

A two-minute video of earth from space from a variety of perspectives.

I have featured earlier some of Christian Wyman’s reflections on religion and Christianity (see HERE), and Andrew Sullivan’s take on Wyman’s book On Christian Wiman’s “My Bright Abyss” captures the questioning better than some of the more secular reviews:

In short, Wiman’s book is the beginning of a conversation we very much need to have, and he clears away so much of the accumulated ridiculousness that has grown-up around discussions of religion in this country. He clarifies the questions we should be asking more than he offers “solutions.” Please read this book – for now, I only can urge that you approach this elegant, difficult testimony to what faith – always mingled with doubt, and always seeking to connect with lived experience – can mean in the modern world with honesty and an open heart. It truly is an essential book for our times.

Not sure whether I will read the book now, but one on my list.

A nice take on happiness in Happiness, Beyond the Data by Gary Cutting, in which he postulates four factors as being key to happiness: good luck, fulfilling work, the ‘proper pursuit’ of pleasure, and human love.

Articles of Interest This Week

Cancer

TIME’s “How To Cure Cancer” cover – worst of the year? reminds us the number of times ‘cure’ has been used and over promised, and that the complexities of cancers mean that while treatments will continue to improve and become more effective, curing all cancers is not in the cards any time soon.

Novartis loses landmark India patent case on cancer drug is another illustration over the ongoing intellectual property disputes over drugs, and the difficult balance between incentives for innovation and public health and budgets.

And among the worst news for any cancer patient apart from faulty diagnosis is misapplication of chemo doses as happened to 990 patients treated or being treated in four Ontario hospitals (fortunately not mine) in Ontario cancer patients given incorrect drug doses.

Man captures wife’s heartbreaking cancer battle with photo blog outlines one family’s struggle with cancer and how they shared this experience to increase awareness.

Susan Gubar has a wonderful piece this week, Living With Cancer: Truthiness, where she writes about the delicate dance we often have with our medical teams about our condition, treatment, prospects and the like, and the preferences we have in terms of how much information we want. Closing quote:

Perhaps with certain (albeit different) subjects, we all end up not asking. Probably about certain (albeit different) worries, our oncologists simply cannot tell. Why not skip lurid coming attractions that cannot possibly be fathomed? With respect to cancer, maybe we all have to endure in the conditional tense of truthiness.

Health and Wellness

A good post on health apps. What patients want from mobile apps boils it down to three things:

• We will not use mobile apps that add to the time we spend caring for ourselves;
• We do not respond well to nagging (I would nuance this to say that ‘nagging’ has to find the right balance between helping us be mindful without being irritating – hard to achieve but Fitbit seems to have found the balance); and,
• We favor apps that are linked to (or associated with) our clinician (in an ideal world, yes, but secondary in my opinion).

An interesting commentary on communication styles in Marriage and medicine: Both are not exact sciences, noting how the doctor-patient relationship benefits from a more nuanced approach to decision-making than simply laying down absolutes, just as in marriage.

On the practical vein, Sodium, Hiding in Plain Sight, notes that 80 percent of the salt consumed comes from factory and restaurant foods, and offers some practical ways to reduce consumption, pending concerted industry-wide action or government regulation (as other countries like Finland have done but Canada unfortunately not given the usual nanny-state ideological concerns).

As always, Jim Salwitz captures the patient-doctor relationship well in Trust: Data verses Doctor, showing how in the era of Dr. Google, patients can become better informed and complement the experience and expertise of their doctor:

So, how does the data revolution affect the doctor-patient relationship and does it change responsibility? If both parties are open to opportunity, having a patient prepare in this way can improve the quality of discussion. Even if the patient’s Internet prep is not quite focused on the particular medical problem, it at least makes the patient familiar with the broad issues and language, which helps the doctor, with the limited time available, more clearly communicate. With this being the goal, both patient and doctor need to bend, a little. The doctor needs to welcome the data and the better basic education that online investigation gives the patient, and the patient needs to be aware that the doctor’s decades of experience cannot be replaced by a Google search. By finding a balance, better health is possible.

Who is responsible for the quality of medical care? I would suggest both the doctor and the patient and I do not believe this changed at all. Both must demand full commitment and responsibility from themselves, as well as the other. The data revolution underlines, more than ever, that medical care is a team sport. Only together, do we heal.

Other

The Science of How Your Mind-Wandering Is Robbing You of Happiness provides a convincing demonstration of just how important living in the moment, being in the now, can be to happiness, from the Track Your Happiness project of Matt Killingsworth.

As someone who loves movies, need to note the passing about of film critic Roger Ebert. Lot’s of good articles out there by the best one I ran across is RIP, Roger Ebert: The Beloved Critic on Writing, Life, and Mortality, as it includes many of his own words (see also Macleans Brian Johnson’s Roger Ebert: An Appreciation for a good summary of his style and impact, and Roger Ebert Talks Movingly About Losing and Re-Finding His Voice (TED 2011), one of the better TED talks and a powerful demonstration of his power of storytelling, as well as how technology has made all the difference to keeping him a full and active participant – thanks Victoria for bringing this to my attention). His comment on blogging, although written from his perspective as a movie critic, captures something more universal:

My blog became my voice, my outlet, my ‘social media’ in a way I couldn’t have dreamed of. Into it I poured my regrets, desires, and memories. Some days I became possessed. The comments were a form of feedback I’d never had before, and I gained a better and deeper understanding of my readers. I made ‘online friends,’ a concept I’d scoffed at. Most people choose to write a blog. I needed to. I didn’t intend for it to drift into autobiography, but in blogging there is a tidal drift that pushes you that way. … the Internet encourages first-person writing, and I’ve always written that way. How can a movie review be written in the third person, as if it were an account of facts? If it isn’t subjective, there’s something false about it.

His terse comment on mortality is a classic:

We’re all dying in increments.

Articles of Interest This Week

Cancer

Not much new but Is the war on cancer an ‘utter failure’?: A sobering look at how billions in research money is spent provides a sobering look on cancer research and treatment, noting that most of the improvement has come from prevention (anti-smoking campaigns), with marginal improvements in most other outcomes. I do not think it is quite as bleak as all that; given the complexity of cancers, both at the individual and common levels, it was naive to expect early ‘cures.’ Managing cancer as a chronic disease does have real benefits to people such as myself. And the latest approach to cancer research, Cancer Dream Teams: Road to a Cure?, outlines how interdisciplinary teams, comprising researchers from a range of disciplines, recognize the complexity of cancers and will hopefully lead to promising results. Not sure how much is ‘repackaging’ of what was likely common practice already.

Much has been written about the links between environmental factors and cancer. Cancer Cluster or Chance? goes behind the science and uncertainty of accounts like Toms River: A Story of Science and Salvation, underlining the difference between correlation and causation, the wish to see patterns where they may be none, and how the politics plays itself out. I would still take a more ‘precautionary principle’ approach that the author, as I think the cumulative effects of our exposure to various chemicals and the like is not without impact, but important to understand the limits of what we know and don’t know. For the review of the book, more sympathetic than this piece, see Books: On the Trail of Cancer: A Review of ‘Toms River’ by Dan Fagin.

James Salwitz on The fine balance between hope and cope in cancer patients, reminds doctors and patients of the need for honesty in discussing the prognosis and usefulness or not of treatment. The rush to treatment, in some cases, can prevent a patient from doing more important things and enjoying life. In a related post, Oncologists vs Hospice, he comments on the need for oncologists to have earlier end-of-life discussions with patients to avoid unnecessary treatment and suffering. And Suleika Jaouad reminds us that not all of us make it through our journey, in A Friendship, Interrupted, about one of her friends who she met in the cancer ward.

The Semantics of Cancer, by Karin Diamond, is another in a series of reflections on the terminology of cancer, and the risk of insensitive comments. Some good examples of what not to say, could be strengthened by a stronger sense of grace and recognition that people, despite their best intentions, will sometimes say the wrong things, and one has to appreciate, in many cases, the intent behind the comment. But her closing remarks were spot-on:

Let’s turn up the love and respect and turn down the need to pounce with our own solutions to problems that may not even exist. The choices someone makes may be drastically different from how you’d approach a situation, but there is no single right way to survive and thrive in this wild and beautiful life. Let’s give each other the space and freedom to do that however we must, minus all the pressure and expectations.

And a reminder in Cancer patients who are positive in the face of terrible adversity that positive thinking doesn’t improve outcomes or survival. However, the article fails to acknowledge the importance that positive thinking can make to getting through cancer treatments, both for the patient and those close to them, and that it may help the patient be more active in their treatment, helping recovery time.

One of the cancer blogs I follow, Thinking Out Loud, has an all-so-true 10 Things I’ve Learned from Cancer. Conclusion says it all:

But to me, life isn’t about creating checklists to check off; to me, it’s about experiencing what you have, where you are, and who you’re with. …. Life’s a journey not a to-do list.

Health and Wellness

While I understand the need for ‘scripting’ in service and call centres, Scripting with patients is a silly game captures some of the absurdity in a healthcare setting.

A good reminder of Questions to ask before your CT scan, given the amount of radiation involved in CT (and PET) scans and how to minimize this over the long-term.

How a Healthy Heart Can Lower Risk of Cancer reminds us that healthy living, whether to reduce the risk of heart disease or cancer, comes down to the same general things: exercise, nutrition, avoid smoking.

The ultimate in online doctoring in The Doctor is In (Well, Logged In) strikes me more as hucksterism than quality medical care but others may disagree.

Mark Bittman, on Banning the Big Gulp Ban, provides his assessment of the court decision striking down the Bloomberg ban of large-size soda drinks. Good piece.

Other

Bruce Feiler’s The Stories That Bind Us details how family histories and stories, through their ups and downs, provide a solid grounding that life has its good and bad moments, and in telling these stories, we can increase resilience in kids.

And more from Evgeny Morozov, Open and Closed, on how online transparency may not be so transparent and helpful as thought. I particularly liked this comment (which applies in many countries):

Likewise, “open government” — a term once reserved for discussing accountability — today is used mostly to describe how easy it is to access, manipulate and “remix” chunks of government information. “Openness” here doesn’t measure whether such data increase accountability, only how many apps can be built on top of it, even if those apps pursue trivial goals. This ambiguity of “openness” allows British Prime Minister David Cameron to champion open government while also complaining that freedom of information laws are “furring up the arteries of government.”

The evolution of writing during a cancer journey – Kevin MD

My ‘writing through cancer’ piece on KevinMD.

The evolution of writing during a cancer journey.

Articles of Interest This Week

Cancer

More of an overview of trends and issues than specific suggestions, Two New Reports From eHealth Initiative Provide Valuable Information On eHealth Tools For Cancer Patients is worth reading for those interested in eHealth issues and some of the challenges that make health applications, beyond fitness trackers and the like, more challenging.

Painkillers Could Prove Helpful in Stem-Cell Transplants provides some early evidence that common painkillers could help patients generate more stem cells for autologous stem cell transplants (the ‘harvesting’ phase). To be tested in clinical trials. Autologous stem cell transplantation improved follicular lymphoma outcomes highlights a recent study showing better results for auto SCTs and Rituximab compared to allo SCTs for follicular lymphomas.

Caring for the emotional needs of a cancer patient captures well the ‘post-cancer treatment blues’ that many of us have to varying degrees, once the immediate focus on our treatment is over. I never had anything as dramatic as the case outlined in this article, but there was some withdrawal symptoms as my follow-up clinic visited decreased in frequency, as they were a comforting routine.

A good reminder on the importance of the quality of life, and how framing a prognosis and end-of-life discussion can make a difference in Sunshine Rounds’ Celebration:

The lung cancer did not stop.  Nevertheless, in those four years since the diagnosis, Sue rejoiced.  She celebrated daily smiles, family travails, dry Thanksgiving turkeys, the moon on Caribbean waters, 43 books, long walks with blisters, bad April fool jokes and two grandchild births.

The medicine that kept Sue alive was not in a bottle. It was an elixir from her soul. She learned that those last years were not a part of death.  Sue healed and gained strength because she decided to live.  Whatever tomorrow might bring, sunrise or sunset, this moment, right now, is infused with the glory of life.

And Valerie Harper, being open about death and living in the moment, provides another good example as in this short video (2 minutes): Harper on living with cancer diagnosis. And from Don Dizon, an oncologist, the importance of saying goodbye, or closure, when their efforts have not succeeded and their patient is terminal in The importance of saying goodbye at the end of life:

“It was the greatest honor of my life to be here for you and to get to know you and your family… thank you for the letting me be your doctor; I don’t know if we will see each other again, but let me tell you now because I can, and because you are here—goodbye; I will always be here for whatever comes to you and your family—but I just needed to say this to you now.”

Health and Wellness

The Disease Lobbies, not surprisingly, shows how lobbying can increase the amount of government funding for research into different types of diseases. This is in addition, of course, to the various public and private fundraising campaigns where some cancers (e.g., breast cancer) receive more attention and funding than others (e.g., lung cancer).

The White Coat Ceremony by Dr. Phil Gold provides a touching and pointed address to second year medical students with 10 suggestions. My favourites are : there are no stupid questions and to manifest your humanity, encompassing altruism, compassion, and commitment. A somewhat different take is “Good patients” cover their emotional cracks, on how patients ‘self-discipline’ themselves in their conversations with their doctors, and how doctors manage their emotional pressures. Always a fine line, and more clinics and hospitals are better at handling the socio-psychological side of treatment, but none of us our perfect in how we handle raw emotion.

A Bumpy Road to a Soda Ban summarizes the initial reaction to the court defeat of Mayor Bloomberg’s ban on large size soda, noting correctly this is more of a ‘nudge’ to change behaviour than an outright ban. Unfortunately, the editorial writers of The Globe and Mail, despite their in-depth reporting on health and obesity issues, wrote a silly editorial on individual ‘freedom and responsibility,’ ignoring the supply-side marketing and engineering that breeds over-consumption. Even their ever-reliable Margaret Wente, normally against excessive government, has come out in favour of some forms of regulation to address the temptations engineered by the ‘food’ scientists (Is it time to ban junk food?). A more nuanced view, on the challenges of getting public acceptance of ‘nudge’ approaches, can be found in the Christian Science Monitor’s Sugary-drink bans and other fads: When pols try to nudge good behavior.

A powerful video on empathy by the Cleveland Clinic. While set in a hospital, its message on understanding and empathy apply to any number of situations. 4 minutes, well worth watching:

Other

Nick Bilton’s Digital Era Redefining Etiquette provides a provocative take of what is proper etiquette in today’s world. Voice mail no, thank you messages or emails no, twitter to communicate with your mother (!). It has provoked a fair amount of comment, one of the better ones, from the Atlantic, This Is Not the End of Email Etiquette:

But, okay, even if you assume that everyone reads and cares deeply about email send offs, there is still room for kindness. On the one hand, you risks offending Slate writers, who will harshly judge anyone who writes “my very best” before signing her name. Far more likely, should you follow his mean advice and abruptly terminate your email, is that the recipient of your email will notice theabsence of a sign-off, and think: “This looks naked. How rude!” Which person would you rather antagonize: The jerk getting pissy over everyone following the presumed standards of human communication, or someone who actually cares about the email you’re sending her? Ideally, neither kind of person would get all worked up and everyone could go on emailing as they please. 

Like a Dagger to Bloggers’ Hearts, Google Just Killed Google Reader (effective July 1) is bad news, as I rely on Google Reader for my article search. I expect alternatives will emerge and should readers know of any good ones, please share (this article in The Atlantic gives some suggestions A Guide to Life After Google Reader: I will try NewsBlur).

And in more Google-related news, The Eyes Have It: Google Glass and the Myth of Multitasking, points out the other major risk in addition to privacy concerns (see also The Plan to Make Google Glass Seem Totally Normal Is Backfiring, which is somewhat encouraging):

Multiple studies have actually shown that it’s actually a myth that our brain can juggle two things simultaneously. In actuality, the brain is designed to only process one piece of information at a time. Cognitive capacity models of attention, memory and processing explain that our brain has a limited amount of resources it can use to deal with new pieces of information it gets to process. The more difficult a task is, the more resources the brain will need to put on the job. But the more resources we use for one job, the less we have to apply toward another. Doing two things at once stretches our brain’s capacity thin, making it so we aren’t able to perform either task without sacrificing some time or performance quality. In other words, while we can certainly try to do more than one thing at a time, reading text messages on our Google Glass screen and cooking, for example, something has got to give. Either we’ll be reading our texts at an incredibly slow pace, or that soufflé we’re supposed to be watching is in big trouble.

Year 1, Week 30: Update on Lymphoma Treatments

1:30

Another good week. Winter definitely feels on its way out, it is gradually getting warmer and the days longer.

http://www.lowerbuckslymegroup.org

I made it to my monthly lymphoma support group. I am starting to wonder whether the first hour format really works as well as it should. The introductions – ‘Hi, my name is X, and I was diagnosed with ______’ becomes repetitive for most of the regulars, and typically takes 20-30 minutes for the 20 or so people there (some provide more detail on their treatment than others ….). We will have a discussion at the June meeting of next year’s program of meetings, and I may raise my wish for shorter introductions (name plus diagnosis and year of diagnosis – that allows people to have the essentials and link up with people who share their diagnosis, and allow time for more discussion on topics of interest). If any of you readers out there have some suggestions, either based on your own support groups or otherwise, this would be appreciated.

The second part was a presentation on some of the most recent studies and trials presented at the American Society of Hematology conference last December by one of our hematologists. Apart from the details on the various results provided, she made a number of interesting comments:

• Conference presentations provide the high level results but it is only once the papers are published that a fuller and more complete understanding of the strengths and weaknesses of the trials are known;
• Initial findings showing dramatic difference in outcomes for different treatments may be less so once one looks at which patients received which drug (i.e., the randomization may not have been perfect);
• While as patients we focus on outcomes, hematologists are equally pleased with results that demonstrate equal outcomes with less side effects; and,
• Ottawa is more involved in trials and research than what I had expected, with the treatment regimens following the latest trial results closely.

She highlighted a number of trials, focussing on those for indolent lymphomas and mantle cell lymphoma (MCL):

• Bendamustine trials show that Bendamustine combined with Rituxan is ‘not worse’ than Rituxan-CHOP regimens, with some side effects less severe. There is not yet sufficient data regarding longer-term outcomes but Bendamustine is being used given knowledge to date. See also Treatment Considerations in MCL.
• For mantle cell lymphoma, European study continues to demonstrate the alternating R-CHOP/R-DHAP (equivalent to R-Hyper CVAD which I had) plus auto stem cell transplant provides better results than just R-CHOP plus auto stem cell transplant. R-Hyper CVAD continues to be the preferred first regime for younger patients.
• BTK inhibitors (or Ibrutinib) continue to show promising results for CLL and B-cell lymphomas, with fewer side effects and risk factors. More trials combining Ibrutinib with chemo are underway. Ibrutinib is also being tested with older MCL patients, with a 65 percent response rate. And Ibrutinib is easier to administer – just a daily pill. See also ‘Highest response rate ever reported’ in relapsed mantle cell lymphoma.
• For large B-cell lymphomas, a comparative trial between GDP (gemsitabine, desamethazone, cisplatin) and DHAP ( dexamathazone, cytarabine, cisplatin) shows that the former is better tolerated, with comparable effectiveness. to the highlights of the trials:
• Rituximab administration subcutaneously (by a needle) works as well as by iv. 5 minutes instead of two hours!

In other news, no tears for Hugo Chávez  (but sympathy to his family), even if I recognize his symbolic importance to the poor in Venezuela, as he gets my cancer denialism award of the year. Not sure whether it reflects his dictatorial tendencies, general male trait not wishing to show vulnerability, or ‘machismo’ but I think most of us with a ‘touch of cancer’ knew this was coming a year or more ago.

No movies this week but we have been watching season 1 of Downton Abbey which we had missed. As with all first seasons, more fresh than subsequent ones and more tightly written, even if some of the plot twists and turns are not credible. However, it is  helpful to have the back story now, as well as appreciating just how impressive the weaving of stories and characters is, and the mapping that must have taken place to make it all fit together, even if in the end is basically high brow soap opera.

 

Articles of Interest This Week

Cancer

Somewhat less encouraging, an update on some of the problems encountered getting cancer vaccines to be more effective in Cancer vaccines self-sabotage, channel immune attack to injection site. However, getting a better understanding of why should help find ways to make vaccines more effective.

From Cancerwise, comes 4 common myths about cancer doctors, which I think is pretty universal, at least based upon my experience here in Ottawa and other readings. The list: small stuff is important, collaboration is practiced, doctors care about their patients’ time, and no issues with getting a second opinion.

A summary of academic literature on the benefits of exercise post-cancer treatment, noting the uncertainty about what approaches work best, including long-term motivation in More Studies Support Exercise During and After Cancer. In the end, motivation has to come from the individual, although support structures (family, friends, support groups, exercise classes, activity trackers) can help strengthen this.

A new initiative from the American Cancer Society, “WhatNext”, another portal, similar to PatientsLikeMe, about sharing patient experiences, but with a cancer focus. Described in For Cancer Patients, It’s Not Just About What’s Now But Also What’s Next–And We Can Help Answer That Question, and in my initial exploration, seems like a well designed portal and tool.

Susan Gubar, an a somewhat amusing piece, tries to categorize the various types of people who comment on her cancer by bird companions in Living With Cancer: For the Birds. Doesn’t completely work but captures some of the awkwardness on both sides:

At times, I have to admit, there is absolutely no response to my cancer that seems acceptable to me, probably because the cancer isn’t. Chirping about other subjects can seem evasive or boring. Chatter about it casts a confining net. Apparently I’m the only one with the right tweets. Should I be left alone to brood in my bristly nest?

But happily I don’t have to choose between exasperation and isolation, given my dear friends near and far: the homing pigeons bearing their quotidian comforts, the perching owls with their phlegmatic wisdom. How splendid to be under their wing! Surely even a lame duck like me shouldn’t go on categorizing and castigating while delighted by the dappled plumage of their numbers: a host of sparrows, a convocation of eagles, a cast of hawks, a charm of finches.

An interesting detail about former Canadian Prime Minister Trudeau, who chose not to treat his metastasized prostate cancer given his also being diagnosed with early dementia, an eminently rational decision in keeping with his motto, ‘la raison avant la passion’, in Faced with dementia diagnosis, Pierre Trudeau rejected cancer treatment.

A lung oncologist throws some cold water on IBM’s Watson for cancer diagnosis in Is IBM’s Watson in Jeopardy? This Oncologist Thinks So!, noting that:

Knowing how much of what I and so many other thoughtful oncologists do, integrating principles and conclusions from one population with judgments and principles to help guide us through cases with many unknowns, I find it very difficult to envision that any algorithm could be complex enough to mimic that thought process that so many of my patients and colleagues value in my perspective.

Watson will likely be invaluable for integrating new medical data and published content in the medical literature. But it is simply a fool’s errand to distill a “best workup” or “best treatment” for the more complex cancer cases.  The medical recommendations it creates based on a learning process of digesting case histories from Memorial Sloan-Kettering Cancer Center (MSKCC), Cleveland Clinic, and other institutions can only be as good as the data that are input and the decision-making processes it is charged to recreate. Not to slight the excellent physicians whose views shaped the algorithms developed, but those algorithms are still the product of human minds and their own subjective interpretations of limited data, laced with significant biases. 

Needless to say, IBM’s CEO has a different view in IBM CEO Ginni Rometty Crowns Data As The Globe’s Next Natural Resource.

Lastly, Leading scientists sign up to global cancer manifesto captures the need for greater cooperation among cancer research organizations worldwide, and greater attention to cancer prevention, particularly in developing countries.

Health and Wellness

To reduce smoking rates further (from the current 20 percent to less than 10 percent), Richard Daynard, in Op-Ed ContributorTwo Paths to the Gradual Abolition of Smoking, suggests regulations to reduce nicotine levels in cigarettes to below addictive levels and prohibit selling cigarettes to anyone born after 2000. And Sugar industry’s secret documents echo tobacco tactics documents early efforts by the sugar industry in the 1970s to discourage public discussion of links between sugar consumption and health.

Some ongoing debate on US health care costs from the Time story featured last week (The Great Healthcare Scam (And The Future Of Journalism)). From Forbes, a detailed analysis of some of the statistics used that suggest the case may be overstated but is not fully convincing to me (5 Myths in Steven Brill’s Opus on Health Costs–Part 1). A more balanced debate can be found in The Great Healthcare Scam, Ctd, including some policy prescriptions. Always strange as a Canadian, given single payer and medicare, to see these variances in pricing.

Sunrise Rounds has a good post on the teaching culture of medicine in The doctor will teach you now, and how this also applies to patients:

The best doctors remember that their calling is not only to teach practitioners of the health sciences; it is their duty to teach their patients.   Every patient can identify physicians whom have the patience and skill to explain the complex in clear language, allowing the patient to make better decisions and have better control of life.  Knowledge is to fear, as water is to fire or as oil spread on a turbulent sea, brings calm.  Patients are the greatest benefactors of a deep educational culture connecting the centuries and ending at individual bedsides.

While not intended to be morbid, This test may offers clues on whether you’ll live beyond 10 years is an interesting way to look at risk factors. Unfortunately, I have not been able to find the direct link to the test, as all the articles I have seen do not seem to have a direct link.

Some nice reflections by Robert Abramson on the ‘follow-up’ culture, where watchful waiting and six month recalls are part of our new reality in Our Wait-and-See Medical Culture. We cancer patients have been aware of this for some time, given fear of relapse, but this also applies to potential cancers or comparable issues

Welcome to the “follow-up culture.” The danger here is that we will always be living in the future: the scan was O.K., but what about in a year? No advances in medicine, as remarkable as they may be, will ever provide us solace for this predicament.

And yet, as disturbing as it is, it also provides an opportunity to live our lives to the fullest each day. As some Eastern philosophies tell us, life is like a river, in perpetual motion, and when we flow with it we attain a level of tranquillity. My patients and I will never know what the future holds for us in this new medical calendar, but my hope is that we can come to terms with the river, make friends with it, and allow it to teach us to be present in the here and now.

And one of the latest developments in reading the body, the following short video shows how magnification of body movements can be used to good effect (i.e., monitoring breathing of babies), but doesn’t go into how it could be used for less worthy aims (e.g., gambling in combination with Google glasses):

Other

A nice summary in The Ethical Nag about changing behaviour, and some tips on how to do so in The three triggers that can change behavior (the elements are motivation, ability and trigger, to which I would add support from others).

A fun collection of quotes by writers on criticism in Cultural Icons on Criticism. My favourite is Joan Didion’s:

A certain amount of resistance is good for anybody. It keeps you awake.

Bill Keller on the The Bullying Pulpit, or how social media tends, ironically, to be less social and more shouting or talking past one another on any number of issues. A reminder to all of us of the role we can play in making discourse and debate more courteous. His reflections:

• Social media rewards partisanship. It is the nature of the medium that like-minded people talk to one another and reinforce one another. It is easy to dismiss any aliens who challenge your prejudices. Unquestioned prejudices shrivel into slogans and labels.
• Immediacy encourages snap judgments, and once you have voiced your judgment to the wide world it is more difficult to retreat from it. Sree Sreenivasan, the chief digital officer at Columbia University, has said he spends an average of three to five minutes composing every tweet he sends. But that goes against the Twitter grain, where I suspect most tweets take three to five seconds.
• In a crowd – and the Internet is the ultimate crowd – there is a temptation to SHOUT to be heard. This is especially true when comments are unfiltered, and the crowd noise consists in large part of nips and jibes and sneers.
• Anonymity – and much of social media still permits anonymity – is license to be vicious.
• The Web culture is simultaneously elitist and anti-authoritarian, as you might expect from a universe that (for now) skews young, educated and attentive to fashions. The technology is open to all; the ambience is more clubby.
• It is always on, and it gets inside your head. If you are a kid hounded by the class nasties, or an adult being punished for an unpopular view, there is no escape.

Evgeny Morozov is getting a lot of airplay on his new book, To Save Everything, Click Here: The Folly of Technological Solutionism, casting doubt on technology as a solution to all our problems. Well worth reading his piece in the New York Times, The Perils of Perfection, and his interview in The Globe and Mail, Why the Internet isn’t the solution to everything. This graphic provides a funny way to structure a TED talk, and fits into the Morozov critique.

Favourite quote:

The ideology of solutionism is thus essential to helping Silicon Valley maintain its image. The technology press — along with the meme-hustlers at the TED conference — are only happy to play up any solutionist undertakings. “Africa? There’s an app for that,” reads a real (!) headline on the Web site of the British edition of Wired. Could someone lend that app to the World Bank, please?

Shockingly, saving the world usually involves using Silicon Valley’s own services. As Mr. Zuckerberg put it in 2009, “the world will be better if you share more.” Why doubt his sincerity on this one?

Whenever technology companies complain that our broken world must be fixed, our initial impulse should be to ask: how do we know our world is broken in exactly the same way that Silicon Valley claims it is? What if the engineers are wrong and frustration, inconsistency, forgetting, perhaps even partisanship, are the very features that allow us to morph into the complex social actors that we are?

Year 1, Week 29: Not Much to Report

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A quiet week. The hernia is all but in the past, and I continue to ramp up my activity levels. I restarted yoga, and apart from a few stretches, rarely felt any sharp pain. And thanks to some more winter weather, I was able to gradually – and gently – shovelling some snow. Another form of physio!

I also attended a ‘non-fundraising fundraiser’ (i.e., no pledge forms but strong messaging about how well funds are used) at The Ottawa Hospital. Really well-organized, and they have their messaging and story down pat (the mantra ‘Compassionate People, World-Class Care’) is matched by their emphasis, in highlighting success stories, on ‘talent, technology and research’.

More leading-edge work done here than I expected, although I had some confirmation while getting my second opinion from Toronto’s Princess Margaret Hospital, Canada’s leading cancer centre, of just how respected the Blood and Marrow Transplant team here is. The other message, always relevant, is how low fundraising administration costs are (20-25 percent, compared to most large cancer charities, which are in the 40 percent range), which is always something I look at.

A nice touch was being seated beside one of my nurses from 5 West (the hematology ward). Nice to catch up and, as she said, the nurses are always happy to see how patients are doing well after they have left their care.

The dinner even included a nice shout-out to my book!

We watched Wes Anderson’s Moonrise Kingdom. A quirky movie (like all of his movies), about two kids who find it difficult to fit in, one a boy scout in a camp, the other a girl from a dysfunctional family, who run away together. Never really comes together, even if it is well-filmed (the colour has a sepia tone which gives it an unusual warmth).

I continue to wade through my mafia book (The Sixth Family: The Collapse of the New York Mafia and the Rise of Vito Rizzuto). It is heavy going, and I think unfortunately, the storyline suffers through the endless details of meetings, killings, drug busts, court cases (successful and unsuccessful) and the like. I admire the authors’ detailed research but a shorter book would be more engaging.

Life continues to be good.

Articles of Interest This Week

Cancer

A story on how the Ontario Cancer Institute, the research arm of Canada’s leading cancer centre, the Princess Margaret, is aiming to become a world leader in Armed with new cash, Ontario Cancer Institute to poach top researchers, a more brash and aggressive approach than previously.

An innovative approach to cancer research in Top technology gurus to design mobile phone game to speed up cancer cures, where cancer genetic data will be analysed by large numbers of people in the form of a smart phone game. Will be interesting to see how this works out; the game is scheduled to come up later this year – I look forward to trying it.

While some of the suggestions (cue cards, detailed logging) don’t work for me, the practical tips at the end are very sensible in CT and MRI scans: Tips for coping with stress. My favourite: aim for an early morning appointment to reduce the likelihood of delays and a longer wait.

Not surprisingly, Screening Decisions Are Better Informed When Risk Information Is Personalised demonstrates that the more doctors communicate the risk factors related to the individual patient, the more high risk patients will opt for screening while overall screening rates declined.

To finish off, another in a series of reflections on the terms we use in describing the cancer journey. The Problem with “Fighting” Cancer provides a good overview of the range of pieces on terminology, starting with Susan Sontag’s Illness as Metaphor. For my own reflections, see What we call ourselves.

Health and Wellness

There has been a lot of coverage of Ben Goldacre’s book, Bad Pharma, and this review by the Globe and Mail provides a good summary in Ben Goldacre and big pharma’s big betrayal, with a sharp conclusion:

That wealth has enabled Big Pharma to employ some of the best minds in persuasion, marketing, psychology and yes, even medicine, to use every (mostly legal) means to create, harness and distort evidence in the service of increasing investor returns. When you see how clever they’ve been, so well documented in Bad Pharma, how slick, how focused, how Machiavellian those minds are, you can only sit back and say, Ooooh, they’re good. They’re damned good. Just not so good for the rest of us.

Some interesting discussion and debate about US health care costs in The Daily Dish (The Great Healthcare Scam (And The Future Of Journalism)), outlining the high price of medical services and drugs that contribute to the US having the highest cost health care system in the world. Short video as well (under 4 minutes).

Richard Thaler, one of the more interesting economists/behavioural scientists along with Kahneman, provides some suggestions to manage health care costs in Overcoming Obstacles to Better Health Care. Much is familiar but his approach to malpractice is one that I have not seen before:

When it comes to my health, I would rather my doctor base her decisions on science rather than what she, or some lawyer, thinks will stand up in court.

And further to the Michael Moss article last week, The Extraordinary Science of Addictive Junk Food, Margaret Wente of the Globe, normally against government regulation, appears to be having second thoughts in Even I’m wondering if we should ban junk food:

Our puny willpower is no match for the mighty forces that Big Food can deploy to find your sweet/salty/fat spot. It’s no good to say we should just ban potato chips, because everything is junk food. Big Food has even corrupted healthy food like yogurt by adding tons of sugar. These highly processed foods are more convenient and often cheaper than what you can make yourself – if, that is, you still know how to cook. To many people, the processed versions are also tastier.

Other

Wrapped up in a Book: The Role of Emotional Engagement in Reading, while not surprising, shows how our involvement with characters in a book can enhance our empathy. I expect the same effect would occur with film or theatre, as good fiction, theatre or movies engage our emotions.

For those of you who like good graphical ways to capture statistics and trends, the latest by Hans Rosling on infant mortality and development is a wonderful example (under 3 minutes):

Lastly, a lengthy but interesting article by Edward O. Wilson, Honorary Curator in Entomology and University Research Professor Emeritus, Harvard University, The Riddle of the Human Species, on what makes us human, and how evolution, at both the individual and group levels, has shaped us and continues to shape us. Well worth reading. Conclusion:

We will also, I believe, take a more serious look at our place in nature. Exalted we are indeed, risen to be the mind of the biosphere without a doubt, our spirits capable of awe and ever more breathtaking leaps of imagination. But we are still part of earth’s fauna and flora. We are bound to it by emotion, physiology, and not least, deep history. It is dangerous to think of this planet as a way station to a better world, or continue to convert it into a literal, human-engineered spaceship. Contrary to general opinion, demons and gods do not vie for our allegiance. We are self-made, independent, alone and fragile. Self-understanding is what counts for long-term survival, both for individuals and for the species.

Year 1, Week 28: Recovery Through Walking

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It has largely been a recovery week, although a fairly easy one. While still somewhat painful, psychologically easier to deal with than the pre-operation discomfort, as I know I am on the healing track and do not have to worry about it getting worse. No major restrictions in terms of walking and mild stretches but no yoga or sports until later this week.

Some of you may recall that I bought a fitness tracker a few months ago (Fitbit). While I have always been reasonably active, I find that it does bring a further degree of mindfulness on the need to be active, particularly important during recovery.

One of my ‘mates’ at the Shouldice ‘camp’ was the champion walker – we almost never saw him sit down apart from meals – and his daughter had also bought him a Fitbit a month or so before his operation. We discussed the effect that it had on his level activity, given that he was clearly also a very active guy. He noted that it provided an extra push; rather than take the elevator up 5 floors to visit his mother, he would walk up the stairs, and a number of other examples. And even the ‘silly’ psychological tricks (e.g., messages you are close to your daily goal, badges for different levels of achievement) worked at the margin to make one more active. My experience is similar, kind of funny how sometimes the mind works, and how such automatically generated encouragement can actually be effective. I have been managing well-over the (default) goal of 10,000 steps and 10 flights of stairs daily, so things are going well.

As it was university reading week, good to have the kids home for part of the week and catch up with their news and plans.

My daughter gave me a book about the mafia The Sixth Family: The Collapse of the New York Mafia and the Rise of Vito Rizzuto by Lee Lamothe and Adrian Humphreys. Funny to be reading this as the Charbonneau Commission into corruption in the construction industry in Quebec is taking place, with a number of suspected Mafia figures ‘testifying’ like ‘Mr. Sidewalk’ about wads of cash in stuffed in socks (you can’t make this up….). More detailed than I would normally want, but it does give a sense of just how painstaking police work has to be to figure out all the connections, relationships and money flows. More a book for the cognoscenti than the general reader but it is keeping my attention.

We did, of course, watch the season finale of Downton Abbey, and, like many, became too vested in the characters and were angry about the tragic ending. However, as Julian Fellowes explains here, the only way to deal with the end of actor’s contract, particularly for family members, is to kill them off. So first Sybil, then Matthew (doubt that this is real spoiler alert at this stage). A cruel business, creating fantasy worlds!

As part of the pre-Oscar preparations in seeing most of the nominated movies, we saw Les Misérables the other day. While I liked the musical on the stage (some 25 years ago!), the screen adaptation was misérable. Not sure exactly what it was, perhaps the excessive close face-shots, the jiggly (and annoying) camera work), the lack of passion or spark in the actors, and, this may reflect changing tastes, the flatness of the music. A stage production allows one some distance, as some reviewers have noticed, this film version is in your face, and too much so (see NYT review here), with its final comments on director Tim Hooper (who also directed the wonderful The King’s Speech):

But his inability to leave any lily ungilded — to direct a scene without tilting or hurtling or throwing the camera around — is bludgeoning and deadly. By the grand finale, when tout le monde is waving the French tricolor in victory, you may instead be raising the white flag in exhausted defeat.

Looking forward to the annual shlock that is the Academy Awards tonight – always fun, even if I suspect I may disagree with some of the winners.