For those interested, an article about my journey (old history now!):
My patient testimonial to help raise funds for the Ottawa Hospital.
Each of the stories was very powerful in its own way, reminding how fortunate we are to have such good medical care in our community.
As I continue my ‘new normal,’ it is time to shed, or at least place in the background, the cancer layer of my identity.
My writing, and your reading and comments, helped me tremendously through the rough and not so rough patches, and hopefully, helped a number of you as well. Putting this all together in book form was also a way to try to put this behind me, and have this reference material available to those who find it useful.
While I had originally planned to continue the blog until the two-year mark, the time when the worst of the odds are over, this increasingly seems artificial as I get on with my life. In many ways, as some of you have likely noticed, I am running out of things to say about cancer and lymphoma, and my weekly update is becoming rather artificial at best, narcissistic at worst.
And I have noticed from a number of other cancer-related blogs that I follow, that others have also scaled back, reflecting their need to ‘get on with their lives’ so to speak. So while I will continue to flag some articles of interest via Twitter, and post the occasional update should the occasion warrant it, I will no longer be compiling my articles of the week and writing my weekly updates.
I will still follow some of the cancer blogs that I have found particularly helpful, and tell my story where it can help fundraising or other awareness initiatives but, as we say in government, I will largely be in a ‘responsive mode.’
My other writing project, a book related to my time in government, is progressing and requires my focus and attention.
As you know, the nature of my lymphoma and treatment means that relapse remains a possibility. Hopefully, I will not need to reactivate this blog anytime soon. But for now, I have the luxury of signing off to pursue my other interests.
To the many of you who have followed this blog or dipped in occasionally, thank you for your interest and support. For those fellow travellers on the cancer journey, may you in particular be well, active and enjoy life.
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.
All for this week.
Some good movies this week.
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.
Another good week. Winter definitely feels on its way out, it is gradually getting warmer and the days longer.
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.
- 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.
A quiet week. The hernia is all but in the past, and I continue to ramp up my activity levels. I restarted yoga, and apart from a few stretches, rarely felt any sharp pain. And thanks to some more winter weather, I was able to gradually – and gently – shovelling some snow. Another form of physio!
I also attended a ‘non-fundraising fundraiser’ (i.e., no pledge forms but strong messaging about how well funds are used) at The Ottawa Hospital. Really well-organized, and they have their messaging and story down pat (the mantra ‘Compassionate People, World-Class Care’) is matched by their emphasis, in highlighting success stories, on ‘talent, technology and research’.
More leading-edge work done here than I expected, although I had some confirmation while getting my second opinion from Toronto’s Princess Margaret Hospital, Canada’s leading cancer centre, of just how respected the Blood and Marrow Transplant team here is. The other message, always relevant, is how low fundraising administration costs are (20-25 percent, compared to most large cancer charities, which are in the 40 percent range), which is always something I look at.
A nice touch was being seated beside one of my nurses from 5 West (the hematology ward). Nice to catch up and, as she said, the nurses are always happy to see how patients are doing well after they have left their care.
The dinner even included a nice shout-out to my book!
We watched Wes Anderson’s Moonrise Kingdom. A quirky movie (like all of his movies), about two kids who find it difficult to fit in, one a boy scout in a camp, the other a girl from a dysfunctional family, who run away together. Never really comes together, even if it is well-filmed (the colour has a sepia tone which gives it an unusual warmth).
I continue to wade through my mafia book (The Sixth Family: The Collapse of the New York Mafia and the Rise of Vito Rizzuto). It is heavy going, and I think unfortunately, the storyline suffers through the endless details of meetings, killings, drug busts, court cases (successful and unsuccessful) and the like. I admire the authors’ detailed research but a shorter book would be more engaging.
Life continues to be good.
It has largely been a recovery week, although a fairly easy one. While still somewhat painful, psychologically easier to deal with than the pre-operation discomfort, as I know I am on the healing track and do not have to worry about it getting worse. No major restrictions in terms of walking and mild stretches but no yoga or sports until later this week.
Some of you may recall that I bought a fitness tracker a few months ago (Fitbit). While I have always been reasonably active, I find that it does bring a further degree of mindfulness on the need to be active, particularly important during recovery.
One of my ‘mates’ at the Shouldice ‘camp’ was the champion walker – we almost never saw him sit down apart from meals – and his daughter had also bought him a Fitbit a month or so before his operation. We discussed the effect that it had on his level activity, given that he was clearly also a very active guy. He noted that it provided an extra push; rather than take the elevator up 5 floors to visit his mother, he would walk up the stairs, and a number of other examples. And even the ‘silly’ psychological tricks (e.g., messages you are close to your daily goal, badges for different levels of achievement) worked at the margin to make one more active. My experience is similar, kind of funny how sometimes the mind works, and how such automatically generated encouragement can actually be effective. I have been managing well-over the (default) goal of 10,000 steps and 10 flights of stairs daily, so things are going well.
As it was university reading week, good to have the kids home for part of the week and catch up with their news and plans.
My daughter gave me a book about the mafia The Sixth Family: The Collapse of the New York Mafia and the Rise of Vito Rizzuto by Lee Lamothe and Adrian Humphreys. Funny to be reading this as the Charbonneau Commission into corruption in the construction industry in Quebec is taking place, with a number of suspected Mafia figures ‘testifying’ like ‘Mr. Sidewalk’ about wads of cash in stuffed in socks (you can’t make this up….). More detailed than I would normally want, but it does give a sense of just how painstaking police work has to be to figure out all the connections, relationships and money flows. More a book for the cognoscenti than the general reader but it is keeping my attention.
We did, of course, watch the season finale of Downton Abbey, and, like many, became too vested in the characters and were angry about the tragic ending. However, as Julian Fellowes explains here, the only way to deal with the end of actor’s contract, particularly for family members, is to kill them off. So first Sybil, then Matthew (doubt that this is real spoiler alert at this stage). A cruel business, creating fantasy worlds!
As part of the pre-Oscar preparations in seeing most of the nominated movies, we saw Les Misérables the other day. While I liked the musical on the stage (some 25 years ago!), the screen adaptation was misérable. Not sure exactly what it was, perhaps the excessive close face-shots, the jiggly (and annoying) camera work), the lack of passion or spark in the actors, and, this may reflect changing tastes, the flatness of the music. A stage production allows one some distance, as some reviewers have noticed, this film version is in your face, and too much so (see NYT review here), with its final comments on director Tim Hooper (who also directed the wonderful The King’s Speech):
But his inability to leave any lily ungilded — to direct a scene without tilting or hurtling or throwing the camera around — is bludgeoning and deadly. By the grand finale, when tout le monde is waving the French tricolor in victory, you may instead be raising the white flag in exhausted defeat.
Looking forward to the annual shlock that is the Academy Awards tonight – always fun, even if I suspect I may disagree with some of the winners.
Well, the hernia is done, and the overall experience at the Shouldice a good one. It really is a well-oiled machine:
- Day 1 Pre-op: Check-in, blood work, ECG, consent forms, accounts office (for semi-private, to be reimbursed later), doctor examination and ok for surgery. X marks the spot. A later quick meeting with the surgeon who will actually do the operation to walk me through the risks etc, show me where the incision will be. And a late afternoon information session to walk all the patients through the upcoming days. And given it is a private hospital, some marketing on add-on massage therapy for the area around the incision post-op. To further go through with final preparations, small groups of 5 meet with the nurse to go through the following days routine and address any last issues or questions. Given the importance of repetition to communications, they certainly apply that, along with some good handouts to reinforce the messages.
- Day 2: Operation: Early start when one is shaved and then taken down with the others for that particular slot. Large pre-op waiting room with about 10 beds. One gets one’s meds (local anesthesia) to calm one down and then about 30 minutes later, one walks in – being supported on both sides given the meds – and set up for the operation. While one can feel a fair amount of pushing and pulling, no pain, some quiet background music and little repartee among the medical team. I was hardly alert in any case to pay much attention. Then after some 45 minutes or so, into a wheelchair, back up to one’s room, change into relaxed clothing, and I drifted in and out of sleep for the balance of the day. In contrast to subsequent days, operation day is largely a day a bed rest, as one’s body needs it. Usual post-op check at the end of the day to ensure all ok.
- Day 3: Post-op recovery: The worst day for pain, and one has to be careful how one moves. But a good design feature is requiring patients to get up and about for meals, wifi, lounges and the like, as there is no entertainment in the rooms. Getting up is the most painful part, as is coughing, sneeing and laughing. The morning begins with the removal of half of the staples (8 in my case) and my first look at my scar – longer than I expected, about 4 inches. A number of us hobble along the corridors (the ‘Shouldice Shuffle’ as one friend calls it), the walking wounded. A short group exercise class, mainly stretching and easy movements. Those one day further along, of course, walk more normally. Manage about 6000 steps.
- Day 4: Removal: Like all hospitals, patients fit into the routine, I am wakened from sound sleep to be asked if I need pain medication, as well as the routine temperature check. Sigh… The remaining staples are removed, as is the bandage. Uneventful. About 48 hours after the operation. . More walking today and less pain, apart from getting up. Usual short group exercise session. About 14,000 steps. Accounts settled.
- Day 5: Discharge: Allowed to go home. Still some pain and discomfort, but able to walk more quickly, with the pain more than manageable.
Overall, a much better experience than standard hospitals. A few other observations:
- First, more women than I expected, about 20-25 percent of patients my week. And more younger patients as well, perhaps 10-15 percent.
- Secondly, while I know the Shouldice is like an assembly line, the care can be characterized as more professional than warm or caring. Tone is cooler than I had expected, or maybe I am spoiled with the warmth of the cancer care I have received in Ottawa (and doubt that general surgery in Ottawa would have been warm). But they clearly have the complete process and procedure down pat, and it appears incredibly efficient from a patient perspective. This also applies to the doctors. The doctor who first examined me appeared more interested in the computer monitor than me as he mumbled through my medical history, the surgeon who operated on me was much better, making eye contact and engaging more as he walked me through the risks and flagged other issues (e.g., my red blood cell counts being lower than normal).
- Thirdly, this is one of the rare cases of medical tourism to Canada from the US, given the lower cost charged (around $5k for one hernia) and short waiting period (it took only 6 weeks from time of application to surgery in my case). There were a large number of US patients here this week, the furthest one coming from Alaska.
- Fourthly, the design of rooms, services, and processes to get people up and moving works. We all have to go to the restaurant to eat rather than eat in our rooms, save for operation day. Wifi only works in the common areas. TV is only available in a few lounges. Sort daily exercise class has almost 100 percent participation. Rooms are for sleeping and resting, little else. A major benefit of this is the chance to compare notes with other patients, learning from those who have already had the operation to know what is ahead, sharing one’s knowledge with those further behind in the ‘assembly line’. A fair amount of black humour helps, and we all compare notes.
- Fifth, nice lounges, lots of natural light, beautiful park like setting and decent food make a difference.
- Sixth, one last note on their written materiel, all of which is very well done, with one bit of advice that perfectly balances information with humour in discussing resumption of sexual activity: ‘when the ecstasy exceeds the agony’. Never seen anything quite as clear – and meaningful – elsewhere.
I finally managed to read Jan Wong’s Red China Blues, her account as a student during the last days of the Cultural Revolution, and subsequent stint as Globe and Mail correspondent during the Tiananmen uprising and massacre. Much of her story is that of her personal growth and coming to terms with the reality of China and the Chinese government; starting off as an idealistic Maoist and ending as a disillusioned cynic of the corruption and inequality in contemporary China. A very good and interesting read, and helpful in understanding contemporary China, what has changed, and what has not.
Today, we drive back to Ottawa. Fortunately, the timing dovetails with reading week, so we will have the kids with us in the car, more good family time.
Although without medical significance, have now passed the year and a half mark, so still something to celebrate.
This week, I had been fighting, unsuccessfully, a cold. Never fully developed, but had a slight fever, so had to cancel most of my planned activities, as I cannot afford to be unwell for next week’s hernia operation. In pre-cancer days, I would have soldiered through, post-cancer, I know my limits better and behave accordingly. Was a bit stir crazy through most of the week, but am largely through it now and back to walks (and shovelling snow this weekend!).
The one event that I did make was a ceremony at my hospital to mark the 100th stem cell courier run by the Bruce Denniston Bone Marrow Society (one of their key activities is providing volunteers to act as couriers for time sensitive and fragile stem cell donations – my stem cell transplant was but one example). Many couriers were there (a large number former police officers given that Bruce Denniston was a Mountie who died of leukaemia). Apart from all the tributes and speeches, nice to see so many of the people that make the system work there to receive this thanks in person.
I also had a chance to catch up with many members of my medical team. My book came up. While most had not read it yet (one doctor is saving it up for the long flight to Australia in a few months!), the hematologist who first welcomed me into the ward way back in summer 2009 had read it. Starting off by saying he normally didn’t like patient accounts, he found mine balanced and helpful in his teaching of the next generation. He also mentioned the graphics as particularly useful; not only was I relieved that I had captured the process and details correctly, it was satisfying to watch him call it up on his iPad and show me how he was using it..
Over the past week, have been reading Gilles Paquet’s Moderato cantabile (moderately and melodiously): Toward principle governance for Canada’s immigration regime. Much is familiar terrain as per my earlier comments on Deep Cultural Diversity: A Governance Challenge.
Unfortunately, the polemical and ideological language distracts from the valid policy discussion on immigration levels, absorptive capacity, the balance between facilitating citizenship and making it meaningful, and equally the balance between integration and accommodation in multiculturalism (or ‘rules of hospitality’ and ‘fair play’ in his terms).
I am always surprised when sophisticated thinkers like Paquet resort to polemic language, as it tends to ‘preach to the converted’ rather than making more dispassionate – and likely more effective – arguments. And attacking other views as ‘ideological’ can only invite similar charges.
A more interesting approach would be a more open discussion of what citizenship means in today’s more globalized world, where travel is cheap, communications free, ethnic programming universal, and whether ’moral contract’ approaches can be meaningful, implementable, and apply to all groups, established and newcomer, historic and new faith communities, Canadians living in Canada or living abroad, and Canadian expatriates, whether born in Canada or not. We can’t turn the clock back on globalization and how it is easier for people to cross time and space and thus all governments struggle to find balance between making citizenship more meaningful in such a world, while accommodating the realities of a more mobile citizenry, and more complex and layered identities.
On a lighter note, I have been reading Jian Gomeshi’s (well-known Canadian radio host and wonderful interviewer for non-Canadian readers) 1982, his memoirs as a teenager in a suburb of Toronto. While he is a wonderful radio host, as a writer, not so. Maybe he was trying to write as a teenager. Maybe he really is as obsessed over his teenage years. Maybe he thinks this period was really interesting and were his ‘glory days’. Maybe each discovery of a new rock or new wave group was unique and amazing. Maybe his Adidas bag was truly iconic. Maybe he dictated his book rather than writing more thoughtfully. And maybe he had nothing more profound to say. And maybe he likes to write in short sentences like this. I really don’t know.
And to use one of his stylistic ‘gimmicks’, here is a list I made about things I didn’t like about 1982:
- uninteresting (even if you like 80′s music)
- condescending (e.g., all references to 1980s technology)
Maybe he didn’t have a good editor, maybe I just don’t find teenage angst all that interesting, or maybe I just don’t get it!
In terms of movies this week, we saw the documentary about Ai Weiwei: Never Sorry, the Chinese installation artist and political activist. His international profile protects him somewhat, and he has an interesting combination of determination and humour as he goes about ‘bugging’ the authorities. And while I am not a great fan of installation art, some of his work is brilliant, my favourite being the use of backpacks in a German show to commemorate the children who lost their lives during the 2008 Sichuan earthquake due to faulty school construction.
On a lighter note, our favourite Louis de Funès movie, La grande vadrouille, his World War II escape picture, with all his trademark gags and slapstick. While the dialogue is not as clever as the Marx Brothers, some of the gags and scenes are incredibly funny. We used to watch his films with our kids when they we in primary school, as there is something about the timeless comic classics (Keaton, Chaplin, Marx Brothers and de Funès) that appeal to the child in all of us.
For my Chinese readers, best wishes for the Year of the Snake, with happiness, health and prosperity for the coming year.
Next week we are off to Toronto for my hernia operation. Not sure whether I will be up to my ‘articles of the week’ post but will likely have some observations on yet another healthcare experience, my first with a private hospital (but paid by medicare).