Articles of Interest This Week

mindwandering1

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.

WebHealth 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

poetry in cancerMy weekly articles of interest:

Cancer

To CT scan or not: What is the ultimate goal of patients? reminds us that what we want, as patients, is not just tests but rather the information we need to know whether we should worry or not, and whether a test is in fact needed.

In a similar vein, Do Oncologists Lie to Their Patients About Their Prognoses? outlines just how hard it is for oncologists to give accurate information when the odds are not good, and just like all of us, are subject to the same emotional pulls. My doctors have been good in that way – outlining the bleak odds, but indicating the factors that may help me be on the right side of the curve.

Some good news to those of you stressed out at work. Work stress link to cancer in doubt cites a large-scale study (over 100,000) showing stressful work situations to not increase the risk of cancer (colorectal, lung, breast or prostate). Of course, stress is not good, and the same study showed an increase of risk for coronary heart disease.

A good overview of recent treatment developments in a detailed slide set in Lymphoma, covering mantle cell lymphoma, other B-cell lymphomas, T-cell lymphomas and Hodgkins lymphoma. More for patients at the beginning of their journey to discuss treatment options with their medical team.

Study finds potentially dangerous errors in chemo use at hospitals is frightening, but reading through the article and comparing to my experience, find that many of the recommendations already in practice at The Ottawa Hospital, where I was treated (e.g., having a second person confirm the dose and drip settings).

Building on labelling for tobacco products, World Cancer Day: How meat can be murder reminds us of the risks of processed meats for colon cancer, and suggests similar labelling.

And in the same week of my Writing as Cancer Therapy piece, Finding Poetry in Cancer talks about how people living with cancer have used poetry to express and help them through their journey. Susan Gubar in Living With Cancer: Waking in the Dark cites a number of poems in her reflections of getting through the worries, anxieties and fear of death, which often emerge at night, and keep us awake. She ends up with the guarded realism in lines from Theodore Roethke:

I wake to sleep, and take my waking slow.
I learn by going where I have to go.

Health and Wellness

Behind the fetish of vitamin B12 shots discusses the medicine and science behind B12 deficiency, and how pills are as effective as shots. My medical team never suggested shots but prescribed pills to address my post stem cell transplant deficiency.

Dr. Google: Tips for patients who diagnose online provides good tips: remember which sites you visit, ask your medical team for recommended sites, and go to sites affiliated with medical or health institutions. My only addition would be moderation as there is a limit to what one can absorb, and how much time one should spend.

Not surprising, for those of us with exercise playlists, but nice confirmation of how beat helps us increase the tempo in Getting Into Your Exercise Groove.

And for the policy wonks among us, a discussion of some of the choices and options facing Canadian healthcare according to Janice MacKinnon, a former Finance Minister of Saskatchewan (where Canadian medicare started) in Saskatchewan knows what Tommy Douglas would do.

Other

The truth about lying: Research shows how famous fibbers give the game away provides some concrete examples of how some of the famous lyers in history (e.g., Clinton, Armstrong) had some visual clues that for the experts suggested things were not as presented. Nice list of top 10 clues, but the bottom line is that lying requires considerable effort and suppression of emotion, which tend to give them away.

For those interested in debates between the faith and atheism, an old conversation between Christopher Hitchens and Andrew Sullivan in Hitch And Sully: Is Religion Fossilized Philosophy? and Hitch And Sully: “Who Is This Herr Ratzinger?”.  While I like much of what Hitchens writes, some of his strident atheism (as in Dawkins) is ironically akin to fundamentalist religious views.

David Brooks on The Philosophy of Data discusses how data can correct for biases and help us develop new insights. Nothing too new here but a good discussion. The most recent example, of course, was the 2012 elections where the pundits lost badly to the data nerd Nate Silver.

An interesting take on the link between fear and conservative views in Tendency to fear is strong political influence, and how familiarity can diminish fears. The degree to which more of us, right or left, live in real or virtual ‘bubbles’, the greater the potential for fear of the other or the unknown:

“It’s not that conservative people are more fearful, it’s that fearful people are more conservative. People who are scared of novelty, uncertainty, people they don’t know, and things they don’t understand, are more supportive of policies that provide them with a sense of surety and security,” ….

“In this way, the definition of unfamiliar may shift across time and location based on experience and education, and a genetically informed fear disposition is hardly permanent or fixed,”

Articles of Interest this Week

quadruple DNA helix

Here are some of the articles I found interesting this week.

Cancer

What kind of patient are we? Does it make any difference? Susan Gubar on the advantages or not of being a good, polite and cooperative patient in Living With Cancer: The Good Patient Syndrome. She is more cynical than me; my experience is that being polite, courteous and expressing thanks builds the relationship that allows one to flag, professionally, when things do not appear to be going right or potential mistakes are being made.

The ongoing discussion of Lance and Livestrong continues, with some interesting takes on celebrity cancer struggles, starting with Ilana Horn’s Lance Armstrong, Susan Komen, cancer and me, a great piece that reminds us that life provides plenty of adversity to remind us what counts, without cancer, and celebrity tales of success just place more pressure on us ordinary folk. Sunrise Rounds reminds us that cancer ‘heroes’ are all around us, no need to resort to the celebrities in Replacing Lance; Cancer heroes.

We tend to focus on certain aspects of our cancer treatment and recovery. While on one level, this is an example of  a superficial concern (First came my cancer diagnosis, then came my bad hair year), we all find different ways of dealing with our cancer and its after effects, and whether this is anchored more deeply or a more superficial ‘proxy’, matters less than whether it provides a helpful coping mechanism.

Australia is often at the leading edge on sun protection, given their hot and sunny summers, and this piece provides a good overview of good sunscreen and other sun protection techniques (Sunscreen, skin cancer and the Australian summer). Bit strange to be referring to this article during the extreme cold snap this week!

Encouraging news from the front line of cancer research on using synthetic HDL (high density lipoprotein) nanoparticles, by starving B-cell lymphoma cells of one of their key nutrients, natural HDL in New way to kill lymphoma without chemotherapy: Golden nanoparticle starves cancer cell to death. A number of years away, to say the least.

More on the research front as curiouser and curiouser, cancer genetics become more complicated in Quadruple DNA helix discovered in human cells, leading to possible treatment that would only target quadruple DNA helix cancer cells, with less toxicity to normal cells. But also a long way off and much more research required.

And on the more practical level, for those of you with peripheral neuropathy (numbness in feet or hands), this short 5 minute video from Memorial Sloan-Kettering may be of interest (Diagnosing Chemotherapy-Induced Peripheral Neuropathy).

Health and Wellness

Contributing to the ongoing debate on cancer screening, Overdiagnosis: An epidemic or minor concern? takes an interesting approach, comparing screening to preventing snipers, arguing for better and more informed discussion with patients on the potential risks and benefits.

Building on this, another good piece on how patients and doctors need to understand each other, how probabilities work (and don’t work), and what the risks and tradeoffs are with any proposed treatment, always taking into account the patient’s priorities and wishes in When the Patient Knows Best. Part of the challenge that most of us have, particularly at the beginning, is that we are still too much in shock and starting the learning curve to be very effective. I was more effective the second time round than the first, given I was more knowledgeable, more confident in my discussions with my medical team, who were by then well-known to me.

On the general health policy front, while I agree with the assumption that patients need financial incentives to improve lifestyle choices in Patients need pay for performance too, this is not terribly well articulated and without examples. A better example of an integrated approach is an earlier post on the approach of the Cleveland Clinic (Smokers Penalized With Health Insurance Premiums).

We are what we eat and reflect our environment. The links between endocrine disruptors in household chemicals and obesity are explored in Warnings From a Flabby Mouse, yet another possible factor contributing to obesity in addition to poor lifestyle choices (lack of exercise, nutrition). See also earlier article How Chemicals Change Us.

Mark Bittman on the cleverness and cynicism of the Coke obesity ad Coke Blinks – I don’t recall Coke supporting the Bloomberg Big Gulp ban. The parody video is quite well done in calling Coke (and the soft drink industry) out on this. And this shameful position, given the obesity epidemic among their communities – money talks in Minority rights groups NAACP and Hispanic Federation join lawsuit against NYC big soda ban.

Good summary on recent findings on smoking death rates and the importance of stopping smoking early to avoid early death in New Report On Smoking In Women Confirms That “Women Who Smoke Like Men Die Like Men”.  While no hard evidence, and no link to some of the more graphic anti-smoking images on cigarette packages in countries like Canada,  Experts believe plain packaging of tobacco products would cut smoking. My own take is that is has been the range of anti-smoking initiatives, including labelling, that have contributed to declining rates.

Other

A somewhat tongue-in-cheek piece on courtesy and politeness in The Courtesy Control Malfunctions, a bit similar to Susan Gubar’s piece but in a more general context. As always, context matters, sometimes being more direct is appropriate, sometimes not, although better to err on the politeness side.

On the more serious side, a discussion of how we are able to hold contradictory beliefs, and some of the biases that are reinforced by our worldview in The Mind’s Compartments Create Conflicting Beliefs. At the individual level, being aware of this phenomenon, and consciously reading and exposing oneself to different viewpoints, is one tactic; when trying to convince others, being aware of their worldview can be helpful in how one approaches a discussion. Useful in any number of personal and professional situations.

Lucy Kellaway on the importance and challenge of plain language. The test examples are funny but pointed in Bosses fail the 10-year-old test, and a reminder to us all.

If you apply the 10-year-old test to business in general, it quickly becomes clear which practices should be kept and which eliminated. Why do the bosses of big US companies earn almost 400 times more than the average worker? Try answering that in a way that a child would accept. It can’t be done.

Many of the things that most of us spend our days at work doing fail the test, too. Sifting through the emails that have arrived in my inbox in the past hour or so, I’ve found one from a management consultant telling me that “the next evolutionary change in business requires a paradigm shift in thinking, involving a grassroots revamp”.

A 10-year-old could never see the sense in that, so it deserves to be eradicated. As, perhaps, does the entire management consultancy industry.

Living With Cancer: Dancing With N.E.D. – NYTimes.com

Another piece by Susan Gubar, this time focusing on music and gynecological cancer awareness, and the group N.E.D. (No Evidence of Disease). Quote:

And then there are people like me who are diagnosed later in life but can’t fill out an N.E.D. dance card because, unfortunately, we still have E.D. (evidence of disease). That said, I am here to add that it is possible, if only intermittently, to hum along with E.D., which has its own sometimes somber but sometimes revitalizing rhythms.

The physician-musicians of N.E.D named their second CD “Six Degrees” for their six medical degrees, but also for the six degrees of separation between patients with gynecological diseases and everyone else. The title reminds me that every six minutes an American girl or woman discovers that she has a gynecological cancer. Let us hope that future research will develop new detection tools and improved treatments, giving each one a longer time to twist and shout with N.E.D.

Living With Cancer: Dancing With N.E.D. – NYTimes.com.

Living With Cancer: Offering Thanks for Caregivers – NYTimes.com

facebook.com

Nice piece on caregivers, those who come to help us, and our partners who also perform caregiving services while giving us the support and love we need.

Living With Cancer: Offering Thanks for Caregivers – NYTimes.com.

Living With Cancer: It’s About Time – NYTimes.com

Nice piece by Susan Gubar on how one’s perception of time, and what one counts, changes with cancer and other serious illness. Rings all too true with with me; I continue to set short-term, rather than longer-term, goals, given my situation, although am starting to stretch these slightly.

And she ends, as someone with a terminal illness and likely about a year left, with:

Sometimes the time left seems too long; too many catastrophes could injure those I love. Sometimes it seems too short; there are so many suspenseful stories unfolding around me, and I want to see how they will turn out. Those for whom time’s chariot is indeed winged often attest to a heightened appreciation of their fast-fading prospects. And then there is always the dream of borrowed time, that numinous period beyond the predicted end, like a stay of execution, which must be fraught with its own blessings and curses.

But during apocalyptic times, when natural forces obliterate the precious places of my origins, even the dream of borrowed time can sink under the rising waters, as I brood on the widespread suffering and struggling of others.

Living With Cancer: It’s About Time – NYTimes.com.

Chemo on the Rocks – NYTimes.com

A bit of an offbeat take by Susan Gubar on one of the side effects of chemo, lack of pleasure from activities normally pleasurable, in relation to having a drink. While in the first month after transplant, eating was a chore and gave no pleasure (largely due to deadened sense of taste), once that went away I actually enjoyed – and continue to enjoy – food even more. As for alcohol, I never drank very much anyway, largely stopped for the first year post transplant, but now am back to having the occasional small glass of wine.

We all have our tastes and likes, and I understand the relief when she was able to enjoy a glass of wine again, just as for me, being able to walk and bike was important. A sense of normalcy returns. Quote:

A quick Web search will tell you which chemicals — and which medications prescribed along with them — will cause adverse effects when combined with alcohol. With this warning in mind, a few years ago I consulted my oncologist, who assured me that I could drink anything in moderation. The power to choose my own toxins buoyed me up in theory, but in practice some forms of chemotherapy gave me mouth sores that made drinking painful or tainted a sip with a weirdly metallic taste. Even these drawbacks might not have stopped me, were it not for another grotesque side effect, one rarely mentioned to patients and hard to describe: anhedonia, the inability to experience pleasure from activities usually found enjoyable. Not all chemotherapies induce this zombie state of not-wanting, not-desiring, not-relishing, but a few do in some benighted people.

Chemo on the Rocks – NYTimes.com.

Living With Cancer: We Are Seven – NYTimes.com

journeytojoy-timberwolf123.blogspot.com

A good piece about Susan Gubar’s small support group. I particularly liked the bit of their ‘rules’ and dealing with uncertainty.

Actually, there is another (unspoken) promise, namely that we perform acts of diligent attention when they are needed and without projecting our own watchwords or goals onto others. That means that if Judy must soon decide on whether or not to embark on a chemo-radiation “sandwich,” discussing her situation takes priority. If Alison’s doctor responds to a recurrence with surgery and Diane’s with a drug, we talk about it without formulating categorical rules about better and best. We strive for the condition of consciousness that the Romantic poet John Keats called “negative capability,” the psychological state of residing in “benign uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.” We are as open to Patricia’s belief in healing hands as to Mary’s faith in CTs.

Because of cancer and its treatments, each of us has had to learn how to tolerate the painful confusion of uncertainty — not knowing why the cancer occurred, if or when or where it will recur, whether the treatment is working or how well. Since we don’t know ourselves, we certainly would not presume to judge the decisions or, for that matter, the lifestyles and values of others.

In other regards, of course, people with cancer are as different from each other as people without cancer. We need to make room for one person’s optimism, another’s fatalism. At times it is hard to keep the various case histories in mind. Which one was misdiagnosed for how long? Whose chemo resulted in kidney damage or neuropathies? What works for me might (or might not) work for you, we surmise.

Living With Cancer: We Are Seven – NYTimes.com.

Needles or Port? A Cancer Patient Decides – NYTimes.com

ebme.co.uk

While the subject of Susan Gubar’s column this week is about whether or not to get a Hickman line or not, the more interesting part is about patient empowerment and its limitations given our limited knowledge as patients, and choice being provided when it is more a matter of convenience than critical to the treatment. Quote:

As is often the case, the decision is left entirely to me. One of the ironies cancer patients face is how often we are asked to participate in medical decision-making when we are least confident about doing so. Cancer has taught me that I little know myself: I had no discernible symptoms at the onset and recurrence of cancer, and none, for that matter, of the dangerously low levels of magnesium that came to light on the first day of the trial. Yet just when I fully realize how poor a judge I am of my own condition, agency is assigned to me: I am supposed to take responsibility for which protocols would be in my best interest.

Doctors and nurses may be constrained to recommend the implanting of a device that would make their jobs easier, but they do not hesitate to urge patients to undergo serious operations, to accept toxic infusions or to enroll in experimental studies. In the divide between medical authority and patient control, the port lands in the second category. Despite well-meaning talk about patient rights, making decisions — about all sorts of issues — can be troubling for those whose cancer has driven home their ignorance about themselves. I have no way of knowing if I will remain in the current trial, or for how long. Would the trial close because of too many bad side effects or, worse yet, deaths? Might I have to drop out because of dangerous blood counts or infections? A storm of unanswerable questions swirls about me.

In my case, I was not given a choice, as I was given a PIC line for the conditioning regime and aftermath of my auto SCT, and a Hickman prior to my allo SCT. Sometimes not being given a choice removes one additional source of anxiety.

Needles or Port? A Cancer Patient Decides – NYTimes.com.

The Trials of Cancer Trials – NYTimes.com

Some observations by Susan Gubar on the emotions and decision making around cancer trials. Quote:

The authors of the consent form do not mince words, though they sometimes translate words not really in need of translation: “There is no guarantee that you will get any benefit (good things) from being in this study. The study drug is not a cure for your cancer.” In a transparent attempt to forestall litigation, the consent form departs from cheery rhetoric to address the incurable: “You have been selected to participate in this study in part because there is no known standard treatment for your cancer.” Phase 1 trials do not offer cures to participants, though they do offer potential cures for future patients.

By means of an amiable division of labor, my husband and I cope with the schizophrenic dilemma of wishing for the nightmare of a recurrence. He hopes that I will get into the trial so I will receive a drug that might prolong my life; I cannot stop myself from hoping that the cancer has not markedly progressed in my abdomen. Dr. Matei says in an e-mail that the CT scan “shows very little,” but that the blood test is “good enough” to get me into the trial. What she really means is that it was bad enough to get me into the trial. Don and I have both gotten our wishes, but we know from the start that the results of the trial are as uncertain as the grounds on which we are making our decision to embark upon it.

The Trials of Cancer Trials – NYTimes.com.