Good timing to go South, as winter and snow continue in Ottawa….
Strange that the feeling of liberation from coats, hats, gloves (and shovelling!) is matched by the awareness that I have to get back to my summer ‘protective gear.’ While last year, I was just happy to be alive and walking, this year I feel a bit irritated that I have to cover up so much with SPF clothing and sunscreen, feel overdressed in the land of T-shirts and shorts, and be careful to avoid the mid-day sun. Not rational at all, but a reminder of how our expectations and irritations change as major problems diminish but emotionally there is a sense of loss nonetheless. Perhaps to complain is human!
That I complain about the necessary precautions to minimize sun exposure is a mark of just how little I have to complain about! Enjoy what we have, is a better approach.
None of this has prevented me from walking more, biking again, and for the first time in a number of years, swimming. My muscles feel it at the end of each day, but a good feeling, reminding me just of what I can do.
Even the drive down made me realize that I can do long drives again; while tiring, it was not exhausting, and was enjoyable seeing the slow transition from snow and temperate to green and sub-tropical, an awareness of the scale of our world that one does not appreciate from above.
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.
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 gamecaptures 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’sThe 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.”
First, I finally saw Amour by Michael Haneke, the winner of the Best Foreign Film at the Oscars (and far, far better and more profound than Argo ….). Not a cheery movie, about old age, and how the relationship changes when Anne, the wife, suffers a mild stroke and following an unsuccessful operation, gets weaker and more vulnerable quickly, and how her husband, Georges, who cares for her warmly and with patience, but in the end is worn down and can no longer cope. Brilliantly acted (Emanuelle Riva, Jean-Louis Trintignant, with Elizabeth Huppert as the stressed daughter), taking place within the increasing confines of their apartment, and with a pacing that captures the slowing down of old age and infirmity.
Well-worth seeing, even if the subject matter and treatment is uncomfortable, just like old age and infirmity. See this take The Brutal Truth of ‘Amour’ – NYTimes.com.
Another uneasy movie, Poulet aux prunes (Chicken with Plums) is the second movie of Marjane Satrapi, the author and director of Persepolis. Much darker, without the wry sense of humour of Persepolis, about a famous violinist, Nasser Ali (played by Mathieu Amalric, his loveless marriage and incapacity as a father, and his longing for Irane, his first and everlasting love, a love forbidden by her father, but one that transformed him from a good to great musician, able to catch ‘the sigh.’
A bit of magic realism, messages of love, loss, and art, playful in parts, not completely successful, but yet deeply moving. Not as ‘réusssi’ as Persepolis, but an interesting film nonetheless.
From ploughing through the details of the mafia in The Sixth Family, a much more enjoyable read in The Emperor of Paris by CS Richardson. In many ways, as I love Paris, an easy tale to fall for, how various characters – bakers, watchmakers, couturiers, restorers, booksellers – weave in and out of each others lives, and how finally the two protagonists come together and find one another. But somehow, the elegance of the writing and the richness of the language, come at the expense of the depth of the characters and interest in the plot. The first half of the book I spent marvelling at the writing but wondering what was the story; the pace quickened in the second half. Overall, I enjoyed it, and his narrative, telling it backwards and elliptically, makes for an interesting style.
In other news, I have been discussing with the Ottawa Hospital Foundation how I can help with their fundraising efforts and have to find a way to tell my story in 5 minutes or less! A good writing and communications challenge.
We are off for a driving trip to Florida over the next few weeks. Given that winter appears to be stubborn this year (snow this past week and a cold wind today), will be nice to get away and have an early taste of summer.
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.
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.
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.
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.
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.
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.
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.
Sunrise Rounds has a good post on the teaching culture of medicine inThe 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?
