Articles of Interest This Week

ON health study

My weekly list of articles of interest.

Cancer

From the UK, more data showing that the Cancer risk is much greater among men. Lifestyle factors (drinking and eating habits) are the likely the cause. And New Study Shows How Stress Feeds Cancer Cells provides confirmation of the contribution that stress can make to accelerating cancer growth rates.

To further deepen our understanding, at the genetic and molecular level, a Mass cancer mapping centre opens in the UK. Over time, this should provide more insight why drugs fail and lead to more personalized treatment. And RNA Fragments May Yield Rapid, Accurate Cancer Diagnosis provides hope that non-invasive early testing will become possible, rather than current biopsy techniques.

Drawing on the work of Freud and Rank (The Denial of Death), James Salwitz talks about how the ‘culture of cure’ in medicine prevents treating the non-animal or non-medical nature of people in Man: the demi-god dies. This hampers end-of-life discussion, where the spiritual and emotional have to come to the fore.

A reminder of the care that cancer (and other) organizations have to take in choosing celebrities to headline fundraises in Great cause, poor choice, criticizing the Ottawa Regional Cancer Foundation for selecting Jenny McCarthy, known anti-vaccine activist, to lead an exercise workshop. Personally, never understand the need for such celebrities to attract support for a worthwhile cause. Couldn’t they find someone more inspirational than a ‘television personality’ without this anti-vaccine and anti-health baggage? In the end, the Foundation bowed to public pressure and cancelled McCarthy’s visit (their ‘Komen moment’?).

And a lovely post by The Franco-American Flophouse about post-cancer treatment recovery, and the mixed emotions and feelings that go along with this in On Parole. Some good tips on how to get back to ‘normal’ – or more accurately, find a ‘new normal’ (e.g., writing, music, friends, reading and, in her case, discovering a new church and congregation).

Health and Wellness

An interesting discussion of the evolutionary roots of some of today’s conditions and diseases in Patients and Evolutionary History, suggesting alternative, behavioural changes to address some of these (e.g., the obvious ones like reducing sugar intake, more exercise, and some less so, e.g., more time outside and less screen or reading time to reduce near-sightedness).

I haven’t posted much on eHealth and mHealth recently but this recent piece What Does the Ideal Hospital mHealth Strategy Look like? struck me as one of the better ones, from both the perspective of health care workers and patients (I particularly like the idea of a ‘formulary’ of approved apps to guide patients).

Earlier, I posted the wonderful 23 and 1/2 hours: What is the single best thing we can do for our … video on the benefits of walking.

A doctor, a filmmaker and their video cure for health care tells the story of Dr. Mike Evans and the other people behind that and other health related videos.

As always, André Picard cuts through the posturing and politics on mandatory  flu shots and health workers in Health workers should make flu shot a point of pride.

Largely common sense, 6 ways to avoid illness when travelling provides some good tips, particularly important the more ‘exotic’ the travel destination.

A good interview with Lyle Palmer, the Executive Scientific Director, of the large-scale Ontario Health Study, outlining the success to date and next steps (about 230,000 Ontarians, broadly representative of Ontario’s population in socio-economic terms (less so in terms of diversity), have signed up, including yours truly. A good public health long-term study that integrates questionnaires and health records from provincial medicare from all participants, complemented by blood work and assessments from some. About 13 minutes here.

Other

One day we’re up, one day we’re down. The poignant tale of the current Canadian Finance Minister, coming to terms with health issues and the need for openness, is yet another illustration. Given the obvious change in his appearance and performance, due to his treatment with Prednisone (steroids) for a rare skin condition, bullous pemphigoid, remaining in the denial stage was no longer an option.

While initial reporting was discrete on the psychological side-effects of  Prednisone (e.g., depression, irritability, confusion), recent reporting (e.g., Side effects of Flaherty’s treatment don’t affect his performance, spokesman says) has openly discussed these. All of us who have taken Prednisone are familiar with these, and how it is not easy for us and those close to us. I cannot help asking, who was the ‘idiot’ on his staff that allowed him to red-eye to Europe for a full day of Davos meetings and interviews in his condition? Hopefully, despite the demands of his position, he will be cut some slack to help his recovery.

Yet another in a series of studies showing how bad we are at multitasking (Are Those Who Multitask Most the Worst at It?). My personal sense is, like most skills or talents, some people are better or worse than others (e.g., some politicians and senior policy makers), what is more important is for each of us to have a better read on our ability, and adjust accordingly.

A nice post from Blessings in Disguise on just how hard it is to change one’s behaviour, with a number of tips (start, baby steps, reward, be accountable, and replace) in Monday Motivation: Change.

And a good short video (2 minutes) on the writing process and creativity by Ira Glass, that applies to so many other areas of life:

Lastly, some of you may have read of Amy Webb’s data driven data approach. I loved this comment from her paediatrician when she applied her obsession with data (can’t describe it any other way) to raising her child:

[My husband and I] were tracking all possible data. It went way beyond poop. We were trying to figure out when she was most attentive so that we could occupy her – flash cards, me playing piano with her. By her six month visit, we asked her doctor to give her a grade, so that we knew whether or not we were making good progress. He gave her an A, and he gave us a C-. He told us to put the binder away and to stop making scatter plots of her … well, of her everything.

Year 1, Week 18: Back Home

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Walking to the clinic

Walking to the clinic

A travel week. The last few days in Geneva with my Mother-in-law, seeing her on the mend and the bittersweet saying of our goodbyes until next year. The usual per-holiday travel crowds with full planes and airports (my mask provoking one little girl to ask me if I was a doctor!). Arriving back home with all the usual stuff to be taken care of, including the remaining winter tasks (e.g., snow tires).

One surprise: another dead battery despite it being replaced just a month ago that had us ‘announce’ our return with the car alarm honking during the jump-start. Under warranty but a pain nevertheless.

It is good being back home. While we were able to leaven our stay in Geneva with frequent walks and that wonderful short getaway to Paris, and helping my Mother-in-law was (and is) incredibly rewarding, there is no place like home, soon to be filled by our kids.

Caring for my her reminded us of the importance of family and friends in getting through cancer treatment and recovery (or other comparable experience). Fortunately, she and we are blessed in that regard, with a number of family friends helping particularly in the next stages.

As for my health, the adjustment to living without Prednisone (steroids) is going well. Stomach not quite as quiet as I would like but getting there, and energy levels seem unaffected. But my hernia, diagnosed over two years ago and treated with ‘watchful waiting’ has been acting up a bit. To avoid holiday surprises, went to Emerg to ensure that no emergency and it can be treated in the normal ‘queue'; not the most enjoyable way to spend a Friday afternoon but did give us peace of mind for the holidays.

The Thousand Autumns of Jacob de ZoetOver the last week, some enjoyable recreational reading for a change, David Mitchell’s The Thousand Autumns of Jacob de Zoet, a historical novel set in early 19th century Japan, a time of decline of the Dutch trading empire and when Japan remained largely off-limits to foreigners. While my knowledge of the period is limited, it reads as very authentic in terms of capturing the times, cultures and relationships. His use of language, as in Cloud Atlas, captures well the different contexts and characters, and the twists and turns of the plot keep one guessing. In the end, a strong message that honesty and integrity do pay, although not with a lot of injustice, hardship and unconsumed love along the way.

This weekend sees us in Toronto to pick up our daughter and catch up with her news. Our son joins us later this week. Good to be back all together for the holidays.

And a last note on the horrors of the Connecticut shooting which as a parent, of course, hits me particularly hard. What is even more shocking, and not understandable to my Canadian mind, is how this is unlikely to lead to changes in gun policies in the USA. Much has been written, much more will be so, and our heart goes out to the families and friends of those killed and traumatized by the event.

Discouragingly, I expect little to change. Nate Silver’s analysis of the changes in language around guns reflects the success of the gun lobby in reducing pressure for sensible gun control:

In Public ‘Conversation’ on Guns, a Rhetorical Shift

And David Frum’s rejoinder to the gun lobby – if not now, then when can the discussion begin:

And I’ll say: I’ll accept no lectures about “sensitivity” on days of tragedy like today from people who work the other 364 days of the year against any attempt to prevent such tragedies.

It’s bad enough to have a gun lobby. It’s the last straw when that lobby also sets up itself as the civility police. It may not be politically possible to do anything about the prevalence of weapons of mass murder. But it damn well ought to be possible to complain about them – and about the people who condone them.

To close with the words of President Obama:

As a country, we have been through this too many times. Whether it is an elementary school in Newtown, or a shopping mall in Oregon, or a temple in Wisconsin, or a movie theater in Aurora, or a street corner in Chicago, these neighborhoods are our neighborhoods and these children are our children. And we’re going to have to come together and take meaningful action to prevent more tragedies like this, regardless of the politics.

Year 1, Week 16: Lesson in Poor Communications

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It has been a hospital week, with the usual daily visits to my mother-in-law. Her recovery continues, but given the nature of her surgery, it takes time.

While her medical care is very good, patient communications is another matter:

  • Tuesday, her oncologist recommended she go directly home after hospital, and not go to a convalescence centre.
  • Wednesday, her surgeon and pulmonologist recommended go to a centre for a few weeks to improve her strength. Both times, they talked about discharge from hospital being the beginning of next week.
  • Yet Thursday, the ward doctor said she was ready to be discharged, and should plan on leaving that same day around 1 pm, as there was a spot in one of the convalescence centres.

While in the end, she had the presence of mind to say she was going nowhere given the previous advice of the doctors (the ones most involved with her care), it is a classic example of how doctors, by not discussing things together and giving contradictory messages, cause more anxiety and worry for patients. Annoying and irritating, and so simple to avoid.

On the good news side, and more important, her biopsy was negative meaning no further treatment required. A great relief to all.

Barbier-MuellerWhile we have had some time for walks etc, the weather has not been conducive (we were lucky for so long). We visited one of the smaller, specialized museums in Geneva, the Barbier-Mueller, which has an interesting collection of masks, ranging from the primitive to the modern (i.e., Darth Vadar!) from all around the globe. What is always interesting, and inspiring, about ‘primitive’ art, is how its imagery, simplicity, and essence has been adapted by so much modern art, coming around full circle as it were. And being Switzerland, a watchmaking connection, with some of the masks inspiring some unique Vacheron-Constantin timepieces (see video here, which gives a sense of their complexity).

I have been experimenting with some of the pay-by-click advertising options for my book to help increase sales. Goodreads so far has been disappointing, StumbleUpon paid discovery is showing some promise. I have also created a book ‘splash’ page to see if that helps (here). A learning experience to see what works best.

I continue to wade through The Denial of Death. Heavy going, as I have been reading the sections on Kierkegaard and Freud. Just one quote this week on group psychology, whether with respect to dictators, politicians or celebrities:

Dictators, revivalists, and sadists know that people like to be lashed with accusations of their own basic unworthiness because it reflects how they truly feel about themselves. The sadist doesn’t create a masochist; he finds him ready made. Thus people are offered one way of overcoming unworthiness: the chance to idealize the self, to lift it onto truly heroic levels. In this way man sets up the complementary dialogue with himself that is natural to his condition. ….

You can see that man wants the impossible: He wants to lose his isolation and keep it at the same time. He can’t stand the sense of separateness, and yet he can’t allow the complete suffocating of his vitality. He wants to expand by merging with the powerful beyond that transcends him….

As usual, time for my monthly stats. In November, the favourite posts (apart from the weekly updates and reflection pages) were:

  1. Leading Bone Marrow Transplant Expert Recommends Significant Change to Current Practice
  2. Psychopaths All Around Us – The Dish | By Andrew Sullivan – The Daily Beast
  3. Cancer makes you realize the gift of time
  4. Let Me Tell You What’s Wrong With Me – NYTimes.com
  5. A doctor’s letter to a patient with newly diagnosed cancer, Every single junk food meal damages your arteries, new study reveals and Why I don’t exercise – Sunrise Rounds | Sunrise Rounds

Health wise, I had my last dose of steroids (Prednisone) this morning, so will see how this goes. Don’t expect too much as have been slowly diminishing dose for the last 6 months. With that, my treatment is essentially over, apart from routine clinic visits and the regular attention to eating well and getting exercise. An early Christmas present.

One of the ‘side benefits’ of spending so much time at the hospital listening to whispered or quiet conversations, is the reminder of just how weak my hearing is (I had tried hearing aids before my relapse but gave them up when treatment started – a lessor priority at the time). Now, I can consider investing the time (and money) to avoid being isolated from many conversations, and frustrating family members and friends when I can’t hear properly.

So progress of a sort, and a new year’s project.

Year 1, Week 15: Above the Clouds

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A wonderful start to the week. We rented a car, went to a typical French market in Divonne (the usual collection of fruit, vegetables, cheese, meat and fish to die for), a nice restaurant, and then finally above the clouds to St. Cergue, seeing sun for the first time in over a week, with a wonderful view of Mont Blanc. When we used to live here, one of the charms of Geneva was that no matter how depressingly gray it was in winter, the sun (and snow) were only a 30 minute drive away.

Relearning how to shift gears was less difficult than expected, even in the switchbacks. We have become so lazy with automatics, even to the extent that my arm was sore by the end of the day. Not sure I would go back to a manual (not many cars offer that option anyway) but does make one more alert and connected to the road.

My mother-in-law’s operation went well. While, in the end, one of her lungs had to be completely removed, she should have a reasonable quality of life. She appears to be recovering quickly, and should be out of intensive care fairly soon. One big step – and worry – over, although we still have to wait for the biopsy results.

Visiting her in the ‘back rooms’ of the hospital was a contrast to the almost elegant, normal hospital rooms (wood laminate floors, wooden cabinets, and the famous menu mentioned in an earlier post – ‘un service hôtelier de qualité’). Intensive care felt like any Canadian hospital, clean but industrial linoleum floors, walls with scuff marks, and of course more equipment, pipes, and beeps than I am used to. But as we all know, quality of care is more important than esthetics (or menus), and we are happy with her surgeon and pulmonologist, who are her active doctors at this stage, and her overall care.

On my health news, phasing out some of my medication as the prescriptions run out. Septra (for pneumonia risk) this week, and the last of Prednisone (steroids), next week. After that, will only have one ongoing medication (Acyclovir) to prevent shingles, another milestone on my ‘new normal.’ Apart from a bit of stomach burbling, the ongoing phase-down of Prednisone is going without a hitch. Hopefully stopping it won’t change things.

I have been reading Ernest Becker’s The Denial of Death, a book reviewing and commenting on the various psychological insights starting with Freud and his successors. Pretty heavy going, and I find it hard to relate to a lot of some of the ‘complexes’ described in psychology (Oedipus, castration, primal scene, etc.). But the fundamental duality, the borderless world (at least in theory) of the mind, and the bordered reality of the body is powerful. Some quotes to give the flavour:

The fact is that this is what society is and always has been: a symbolic action system, a structure of statuses and roles, customs and rules for behaviour, designed to serve as a vehicle for earthly heroism. Each script is somewhat unique, each culture has a different hero system…. But each cultural system is a dramatization of earthly heroics; each system cuts our roles for performances of various degrees of heroism: from the ‘high’ heroism of a Churchill, a Mao, or a Buddha, to the ‘low’ heroism of the coal  miner, the peasant, the simple priest; the plain, everyday, earthy heroism wrought by gnarled working hands guiding a family through hunger and disease….

… this whole book is a network of arguments based on the universality of the fear of death, or ‘terror’ as I prefer to call it, in order to convey how all-consuming it is when we look it full in the face ….For behind the sense of insecurity in the face of danger, behind the sense of discouragement and depression, there always lurks the basic fear of death, a fear which undergoes most complex elaborations and manifests itself in many indirect ways…. No one is free of the fear of death….

Necessarily because the existential dualism [mind and body]  makes an impossible situation, an excruciating dilemma. Mad because …. everything that man does in his symbolic world is an attempt to deny and overcome his grotesque fate. He literally drives himself into a blind obliviousness with social games, psychological tricks, personal preoccupations so far removed from the reality of his situation that they are forms of madness — agreed madness, shared madness, disguised and dignified madness, but madness all the same….

Personally, while we all fear death, I am not convinced that our life is as tortured or mad as described. Part of the natural process of growing up is understanding one’s place in the world and that our time here is limited. For deeper reflections on life, I find Frankl’s theory on meaning more convincing; to use Kubrick’s phrase, in an indifferent universe, we need to create our own light. And for practical day-to-day living, Kahneman’s work on how we think (or don’t!) is more applicable. But will finish the book to see what additional insights it offers.

Year 1, Week 12: Quarterly Clinic

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Had my quarterly clinic visit (a key marker of progress is when clinic visits become less and less frequent). The short-form result: all good and boring, no major follow-up needed.

The detailed version:

  • Medication phase-out: I am now down to 1/2 tablets (2.5 mg) of Prednisone every second day for the next month or until I finish my current prescription. Once I stop Prednisone, I can stop Septra (anti-pneumonia) and go to a half-dose of Acyclovir (shingles prevention). Progress. I can also finish off my B12 bottle.
  • Muscle aches: She confirmed this was normal. Many long-term ‘survivors’ note that it takes between 3-5 years before one is back to normal; and, of course, at that time one is older anyway. Nothing to worry about, just the sensation that I have aged more quickly than I would have liked.
  • She reviewed the normal signs of GvHD (skin, digestive issues, eye dryness etc.) and I am fortunate to have none. While the risk continues to diminish with time, still something they watch closely.
  • I had noticed a sensitive spot on my right diaphragm. She noted not an issue unless it is something new – it is not.
  • She checked that I was on track with my vaccinations (I am, and mentioned getting flu shot this week).
  • No plans or needs for scans, but a pulmonary function test will be scheduled in January even if my activity level suggests not needed.
  • Overall, happy with my physical and mental activity levels and ‘am doing all the right things.’

No substantive comment on my book but recognition that is subject of a fair amount of ‘excitement’ among the clinic staff. I also briefly saw the main clinic nurse, who has always been wonderful and patient with us, who gave me a hug for making it so far!

My book sales are fairly flat but starting to get a few media nibbles, so will see where these go.

I have almost finished reading The Spirituality of Imperfection. The second part deals with how Alcoholics Anonymous uses a number of the long-standing elements of spirituality to help people change their behaviour through recognition of their own imperfection. Only one quote this week on the importance of community or the group (while I am enjoying the book, particularly the small vignettes, it is somewhat repetitive):
But if we learn to ‘see’ – first – ourselves as limited, then everything shifts, the whole world turns upside down…. In such a vision and in such a place, we can stop trying to conceal our imperfection and therefore our very essence. We can stop hiding. For what is there to hide or hide from when it is our very weaknesses that give us strength? In such a setting, others, listening, identify and in the process of identifying, come to discover their own identities.
My films this week included Cloud Atlas and Midnight’s Children. Both are ambitious films, reflecting the ambitious and scope of the books they are based upon.

I was really impressed by how well Cloud Atlas worked, how it brought the diverse stories and characters – across five centuries – together in a coherent and compelling way. Kept my attention and interest throughout a beautifully filmed three hours. Curious to read the book to see the differences and contrasts between the two media.

As you may know from earlier posts, I am a fan of Salman Rushdie, and thus wanted to see how he and Deepa Mehta were able to adapt Midnight’s Children into a film.

Disappointing, a far too literal and linear recounting, with little of the magic, the explosiveness, and imagery of the book, with only the first few scenes capturing some of this. Ironic, the verbal ‘pyrotechnics,’ which I always love in his writing, did not translate into similar ‘wow’ moments on screen. Some film adaptations work well (English Patient, Atonement), this one didn’t, again surprisingly as I would have thought Mehta and Rushdie, given how powerful they both are as storytellers and imagery, would have been able to pull this off.

A new month, and time to review my blog stats. October was my strongest month yet for views. Again, apart from the weekly update and the reflection and tip pieces, the articles that drew the most attention were:
  1. Meredith Israel Thomas (here and here)
  2. Leading Bone Marrow Transplant Expert Recommends Significant Change to Current Practice
  3. A doctor’s letter to a patient with newly diagnosed cancer (a perennial favourite for good reason)
  4. Poking Fun at My Patients
  5. Helping cancer survivors fight neuropathy

I have had a good week catching up with friends, capped off with a wonderful weekend with our kids in Toronto. So wonderful to see their ongoing development as young adults. And the timing is close enough to our son’s birthday that we could celebrate his turning 21 together, even though that is less of a milestone than it was when I was growing up.

I have, of course, also been watching Hurricane Sandy and its aftermath, a reminder of the force of nature, and how disasters bring people together and remind us of our shared vulnerability.

Next week back to Geneva to continue helping my mother-in-law with the next stages in her treatment.

Year 1, Week 11: Back in Ottawa

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An uneventful trip back to Ottawa, flights not full, but still wore a mask to reduce the risk.

The focus this week was getting my book launched with both mass and targeted distribution of the press release (here) and a ‘click-based’ campaign on Goodreads. Some signs that search engines are reflecting this but the sales uptick takes a bit longer – at least am in double digits! Not surprisingly, iBookstore and Amazon are where things are happening; Kobo is just not as mature and popular a platform.

Some good interest on the part of my medical team. While I had thought the last thing they would want is yet more reading about cancer, lymphoma and transplants, I was pleasantly surprised by their enthusiasm and interest in the book. Gratifying, and of course, I am interested in how they react to one patient’s account of his journey. I may get some initial feedback at clinic next week but I suspect that some of their enthusiasm and interest reflects their happiness at a patient who has emerged with enough energy to get a book out.

One of my readers suggested The Spirituality of Imperfection by Ernest Kurtz and Katherine Ketchum. A survey of spiritualism, ranging from the Abrahamic to the Eastern religions, and including modern variants such as the 12 step program of Alcoholics Anonymous. The anchor that our imperfection is part of our essence of being human, and it is better to be open and accepting of our imperfection, rather than striving for what is not to be, is powerful. The book draws from a number of stories from the various religious traditions to underline the points, reflecting another fundamental truth, that much of what we learn, we learn best from stories.

Some quotes to give the flavour:

The spirituality of imperfection is a spirituality of ‘not having all the answers.’ For those who have come to expect an answer to every question, a solution to every problem, and an end to every beginning, such an approach may be disconcerting at first. …

The core paradox that underlies spirituality is the haunting sense of incompleteness, of being somehow unfinished, that comes from the reality of living on this earth as part  and yet also not-part of it. For to be human is to be incomplete, yet earn for completion; it is to be uncertain, yet long for certainty; to be imperfect, yet long for perfection, to be broken, yet crave wholeness. All these yearnings remain necessarily unsatisfied, for perfection, completion, certainty, and wholeness are impossible precisely because we are imperfectly human – or better, because we are perfectly human, which is to say humanly imperfect. …

Spirituality begins in suffering because to suffer means first ‘to undergo,’ and the essence of suffering lies in the reality that it is undergone, that it has to do with not being in control, that if must be endured. We may endure patiently or impatiently, but because we are human beings, because we are not at each and every moment in ultimate control, we will suffer. …

… the question ‘Who am I?’ carries within itself another, even more important question: ‘Where do I belong?’ We find self – ourselves – only through the actual practice of locating ourselves within the community of our fellow human beings. Discovering community and becoming aware of our ‘location’ within that community involves the experience of ‘Fitting.’ Real ‘feeling good,’ the ‘feeling good’ that comes only from ‘being good,’ involves ‘fitting in’ with others who are engaged in the quest for answers to their most anguished questions.

On the flight back, finally saw Deepa Mehta’s Water, a story about widows in India and how their life ends when they become widows, forced to live largely in an isolated ‘widow community’ until the day they die, set in the context of India’s struggle for independence. Visually beautiful, and powerful, capturing some of the ongoing legacies of Hindu traditionalism, at a time of change in India. Not a hopeful film, despite the ending, and a reminder of the lot of women in many developing countries.

I am looking forward next week to seeing her film of Midnight’s Children; although film adaptations of novels are always risky (and funny how the more cinematic the novel, the harder the adaptation), the screenplay was written by Salman Rushdie and, just as with The English Patient novel and film, interesting to see how the core story is captured in both forms.

I also watched Ralph Fiennes’ Coriolanus, a reminder of just how enduring Shakespeare is, as the film has a contemporary setting, much of the more harrowing scenes shot in post-Balkan war Serbia. While some critics have remarked that the beauty of the language has been lost in the ‘action scenes,’ I did not find it so; the lines, whether in the heat of battle or the midst of political intrigues, are timeless. With a very strong cast, led by Fiennes in the title role.

It is a bit strange being back in our house alone. With our daughter off at university and my wife still with her mother-in-law in Geneva, our cat and I have been bonding more than in the past. Fortunately, with Skype and cheap calling cards, easy to keep in contact but I miss the presence, the being, the normal background sounds that make a house a home.

I have been catching up with friends, always enjoyable, as well as attending to the normal house maintenance (less enjoyable!) and occasional surprise (dead battery on both cars).

Next week I have my clinic visit, largely routine, although I may get the go ahead to phase out Prednisone and Septra (and get some feedback on my book). I also need to get my flu shot – hopefully my doctor has the non-Novartis one recalled recently.

Next weekend takes me to Toronto to see our kids, who I miss so much.

Year 1, Week 2: Clinic Update

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My week started with a clinic visit and another sign of progress: to being labelled an ‘oldie’ to use the term of the nurse. While some of the other patients don’t like this term, I am quite happy to be an ‘oldie’, given that it is better than the alternative. I did suggest to the nurse (who knows me way back from my time in the ward), that she try out the term veteran to see how some of the other ‘oldies’ react.

I had a bright young resident that I had not met before go over me thoroughly, after the obligatory congrats on the one-year mark. Key points.

  • Neuropathy: Not much that can be done to reverse the damage. Something I have to live with (either is damage to the peripheral nerves or the blood vessels that supply them). Not a big deal, just an inconvenience.
  • Prednisone phase-out: Down one further step, to alternating daily between 5 and 0 mg. No real effects noted to date.
  • Septra (anti-pneumonia): Will keep taking for a few months yet – ‘if it isn’t broken, don’t fix it’.
  • Pulmonary Function Test: Some nuance from the last discussion. Lung capacity slightly up, diffusing capacity (ability to absorb oxygen), just under the normal range. Not a big worry.
  • Liver health: Not only are my liver enzymes where they should be, but my excess level of ferritin, over double normal a few months ago, is close to normal. All of this without ‘bleeding’ me.
  • Lungs are clear
  • Pleased that I am on track with my vaccination schedule.

Amusingly, the resident asked if I was an engineer, given her perception of my organization and methodological approach to being on top of the file. I replied that I worked for the government, and she, being from Alberta, noted that she had forgotten Ottawa is a government town.

My regular hematologist popped in, looked me over quickly, pronounced me well, and gave me a quick neuropathy test (walking on one’s heels, standing at attention with eyes closed). I passed with flying colours, he laughed and said not real neuropathy. And then the best sign of progress: ‘we don’t need to see you for another couple of months’. So out the door I went.

He also provided me with the identity release forms to allow my donor to know my identity. Nothing too onerous, with the usual balance of potential rewards and risks, and the ability to be selective on how much information one wishes to release (ranging from name only to all contact information).

Of course, now that we have the form, we are reflecting on whether or not we wish to go ahead. From the theoretical possibility to action always gives one second thought. While some of the risks (e.g., loss of anonymity and publicity) are not risks to us given my blog and forthcoming book, there remains a certain feeling of awkwardness about establishing contact with a complete stranger, one who is part of my in a physical sense and who has saved my life. In the end, I expect we will go ahead, but no need to rush, so we will reflect further.

Finally bought a new Mac as our old one was becoming irritatingly slow on some of the more graphic-intensive tasks. The joy of speed, that wonderful first few months when everything just flies, and one appreciates it that much more.

This also helps with the revisions and edits on my book. The text is all edited, save for the conclusion, and some final formatting corrections and adjustments. I finally decided on the title after consultation with some friends and family: Living with Cancer: A Journey.

A good feeling to get this far. I now have to reformat this from the iBook format to Kindle and Kobo formats (the iBook format is visually more rich, allowing for better quality photos and graphics). I continue to have discussions with a number of organizations on promotion and marketing opportunities, and am largely on track for ‘launch’ mid-to-late September.

Movie-wise, more light entertainment these days with our daughter in her last few weeks before she goes off to university. We watched The Hunger Games, while not terribly deep, has some wonderful riffs and commentary on human nature: our vicarious interest in violence from Roman gladiators to NHL hockey goons, our entertainment obsessed culture, the cynicism of media producers (‘you call that a kiss’), sport as ‘opiate of the masses’. More conventionally, we also watched Iron Man, a fairly standard action flick.

Apart from all this, the usual routine of walks and biking, including some good walks and visits with friends, some that I had not seen for some time. All good.

Year 1, Week 1: Starting my second year

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My first weekly update of my ‘new year’.  As is good, not much to report on the medical side, everything seem pretty much on track, my biking times continue to be good (if no Lance Armstrong), and remain fully engaged in finalizing my book.

I do have a clinic visit next week and hope to have a good discussion on what I may expect over the coming year (nothing is predictable, but some sense from the medical team’s experience would be helpful). I expect a further reduction in Prednisone given that I have supported well the last reduction, and will see whether I can now be taken off Septra (to prevent pneumonia), which normally happens about a year out.

The more interesting discussion will be in relation to knowing the identity of my donor, and the process (more consent forms to sign!) that this will likely entail. In one sense, my donor will have an advantage as he (I know he is a he) can read about me, should he so choose, in my blog. I am not quite sure yet how this will happen and develop, or how far he and I would like to take this, but at a minimum I would like to write to him and express my thanks for the gift he has given me and my family.

My latest Cancerwise article went up (Working with your medical team), which was shared fairly widely and engendered some good discussion on their Facebook page. That is the last piece I have planned for some time as attention shifts to getting my book finished and out.

On other news, we are helping our daughter get ready for university and residence. As always, bittersweet feelings; on the one hand, we will miss her dearly, on the other, we are happy as she continues to develop and expand her horizons. And then, of course, another transition for us, to being empty nesters.

Movie-wise, we saw The Verdict, in which Paul Newman plays a down-and-out alcoholic lawyer, hanging all his hopes on a malpractice suit against a major hospital. While the ending is, of course, a happy one, there are enough twists and turns and good character portrayals, to make it engaging. A good legal drama.

We also went to see Hope Springs, the Meryl Streep and Tommy Lee Jones film about a middle-aged couple trying to rekindle their marriage. Not a great movie – hard to find the right balance between the comic and the serious – but some very funny moments, and the characters are well-played.

I read, Michio Kaku’s Physics of the Future, covering likely and/or possible technological developments in such areas as: computers and artificial intelligence, medicine, nanotechnology, energy, space travel, wealth, and somewhat pretentiously, humanity. He is at his best when describing what may be possible based on research and trends of today; in areas where I know something or follow (e.g., computers, medicine), the predictions sound as credible as anything out there. And he has a certain refreshing kind of modesty; no cancer will not be completely cured, no humans will not be travelling to the stars or colonizing planets. The one area that I found most interesting was some of the potential for nanotechnology, both on earth and beyond, that I was less familiar with.

While Kaku tries to address the human side, by referring to our ‘cave man nature’ (I would prefer our humanity), the book is fairly light on this score. To my mind, that is the most interesting part of the discussion; what do all these technological advances mean to us as people, as society, what should be allowed and what should not when it comes to genetic engineering, and how does this all play into some of the equality and democracy issues we are facing now (his prediction of an almost unlimited age of abundance strikes me as superficial, although he has a nice discussion of some of the transition challenges – economic, social, environmental – we face in becoming a ‘planetary civilization’).

A good read for those interested in technology and the future, written in clear, lay language.

Apart from that, nice walks and biking, some good cottage visits, and just enjoying life.

For those of you celebrating the end of Ramadan, Eid Mubarak.

 

Week 52: Made it to the One Year Mark!

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A year ago, this possibility felt far, far away, with uncertainty and worry.

Today, looking back over the fears, the ups and downs, the fundamental question of whether I would make it or not, equally seem a lifetime away. Part of our survival mechanism as humans to put bad memories behind us as much as possible.

Revising the edits for my upcoming book reminded me of just how rough the journey has been, along with the recognition that I have been one of the lucky ones, with no major long-lasting side effects, and no major impairment to my quality of life. The dark days have to be appreciated in that context.

I remain in awe and wonder about this second chance I have been given. The same sense I had walking out of the hospital one year ago.

Without the stem cell transplant, I would likely not be here today. But I did and I am.

A strong sense of gratitude that I am living in a place and a time when such treatment is possible, such a second chance is given. Reading the horror stories of patients dealing with health insurance in the US, I have a renewed appreciation for Canadian medicare and universal coverage. Last, but not least, the support of family and friends.

So where am I one year out?

  • Doing fine on the 4 general measures (no signs of lymphoma, blood marrow working with good blood counts, no significant GvHD, and looking and feeling well)
  • Energy levels that allow me to be physically and mentally active, although with the need for more rest than before
  • Emotional state that keeps me active and engaged
  • Some neuropathy in my feet that impairs my balance but not my preferred activities of walking and biking
  • Reasonably strong immune system that allows me to be with people, in small and larger settings, although with some caution

All-in-all, life is good, and for that I am truly thankful.

I continue to reflect further on what this all means to me, to my family and to others, as I work on the conclusion to my book. My story, and the meaning to me and those closest to me, is fairly clear. At the broader level, the meaning is less clear, but does revolve around how we live our lives with others. Some further reflection and hard writing ahead.

Overall, I am more reflective and appreciative, and try to reflect this in my day-to-day life. I always come back to the words of Leonard Cohen, whose words in Anthem have helped guide me through this journey:

Ring the bells that still can ring 
Forget your perfect offering 
There is a crack, a crack in everything 
That’s how the light gets in.

To celebrate my one year anniversary, our son came up to visit so we could all be together to savour the moment – and the relief that all of us feel, as well as the hope that the worst is behind us. We all know what we don’t know – what the future will bring – but avoid dwelling on that, and live and enjoy the here and now.

In terms of the smaller stuff, last week I was worried that the Prednisone phase down had impacted my energy levels, with my biking times being the measure. This week, I had the best times in over a year. Tangible progress.

We have been watching again some films together with our daughter. The Dead Poet’s Society, which captures the private school milieu and pressures to conform all too well,  and The Adventures of Tintin, where seeing it again reminded me just how visually beautiful this film is, with some amazing scenes (e.g., the desert into ocean transformation). We also saw The Ladykillers, a 1955 film with a creepy Alec Guinness, as the ringleader of a bunch of robbers who pretend to be musicians as they use an old woman’s house as their base. Some very good moments, a very young Peter Sellers in a straight role, and a nice throwback to more intelligent thrillers than the more action-packed ones of today. Lastly with my son, Waiting for Guffman, an ensemble piece (same group that did Best in Show and A Mighty Wind), a nice offbeat comedy about a small town theatre production to mark the town’s 150th anniversary and the town personalities that come together to put it on.

Not much more to say this week, except to thank all of you for your support and encouragement over the past year and longer.

Now, I can look forward to my next milestones, revolving around family events, with the next unique ones being a planned trip with daughter next spring, and my son’s university graduation early next summer.

Week 51: Not much to report – All well

Another good week, great weather for biking and walking, and keeping busy and engaged.

The on-off nature of Prednisone (10 mg one day, 0 the next), while mercifully sparing me feeling crummy, has had a few minor side effects. My energy level appears to be a bit more variable – some days I nap, other days not, my stomach has more burbling than before, and my strength seems to vary more, with a bit more muscle fatigue. Even my biking time a bit slower this week (I don’t think I can blame it all on the wind!). All part of the adjustment process, and nothing that prevents me from  doing things, but interesting to experience. This will diminish, I expect, once I further phase down to alternating between 5 and 0 mg each day.

I went to see Batman: The Dark Knight Rises with my daughter. More conventional than the last one (hard to outdo Heath Ledgers’ Joker), with less wit, a bit of a mish-mash of allusions to  Occupy Wall Street and the French Revolution (the people’s court), an overall message of the danger of anarchy (as noted by a number of conservative commentators), but with some interesting twists and turns in the plot. And I liked how the ending tidied up all the loose ends in a satisfying manner (I would have said credible but given how the whole idea of someone like Batman operating on his own without a large team to support him is not credible ….).

On a completely different note, we watched Waiting for ‘Superman’, a documentary about education in the US and how, while particularly acute in inner city schools, the US has lost its former competitive advantage in education has been overshadowed by many other countries. While a bit simplistic – yes, rigidity by teacher unions is a major part of resistance to change, the issues also reflect family situations (e.g., ‘Goodnight Moon’ reading time) and overall economic and social conditions (e.g., more affluent families can provide more of  enriched activities than families that are struggling). Worrying, given the importance that education has had on innovation and mobility. That being said, some fairly moving testimonies of families of modest means trying to do their best for their kids and get them into schools that provide a strong learning environment and focus. As we watched it with our daughter, just graduated from high school graduate, a good opportunity to discuss her school experience with her (and she recognized how fortunate she had been).

And of course we have been catching some bits of the Olympics.

I finished reading Guy Vanderhaeghe’s A Good Man, as I needed some fiction for a change. I really enjoyed it. Set in the both the Canadian and American West shortly after the American Civil War and Custer’s defeat, it captures nicely the dynamics across the Canadian-US border at a time of ‘pacification’ of the aboriginal populations. The characters are rich and believable, the depiction of the time engaging (I was not all that familiar with this period), and some of the themes (e.g., aboriginal and ‘white’ relations) remain pertinent to our time. And it is a bit of a ‘page-turner’ as one is so curious to see what happens next. A great summer read (or any other time).

July was my blog’s most popular month ever, with the most popular posts (apart from the weekly updates and various reflection and tip pieces) being the following:

  1. Darcy Doherty and ‘Last Chance’ treatments (Darcy Doherty: Cancer patient’s death strengthens a push for last-chance drugs, Terminally ill patients should have access to last-chance therapies, In one man’s fight against cancer, safety trumps hope)
  2. How Stress And Sleep Loss Are Shortening Your Life
  3. Life, Interrupted by Suleika Jaouad
  4. Is organic food too costly?
  5. Patients seek Internet information to start dialogue with physicians and Researchers Find Potential Key to New Treatment for Mantle Cell Lymphoma (MCL)

Hard to believe, but only one week to go to my one year anniversary. Life is sweet.