My local community newspaper did a nice review of Living with Cancer: A Journey:
Mantle Cell Lymphoma
Merry Christmas and Happy New Year
Best wishes for the holidays and 2014, no matter how you celebrate. Thank you all for your support over the past years. While my cancer journey continues its ups and downs, including another relapse and treatment, I am grateful to my family, friends and medical team for keeping me on this earth.
Andrew
Ottawa Hospital Foundation Testimonial in “Life Support”
For those interested, an article about my journey (old history now!):
http://ohfoundation.ca/sites/default/files/images/pub_lf_sum_fall_2013_e.pdf
Ottawa Hospital Foundation Public Service Breakfast – April 2013
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.
Year 1, Week 35: Time to Refocus
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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.
Year 1, Week 32: Escaping More Snow
Warm at last!
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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.
Year 1, Week 31: A Few Movies and a Book
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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.
Year 1, Week 30: Update on Lymphoma Treatments
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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.
She highlighted a number of trials, focussing on those for indolent lymphomas and mantle cell lymphoma (MCL):
- Bendamustine trials show that Bendamustine combined with Rituxan is ‘not worse’ than Rituxan-CHOP regimens, with some side effects less severe. There is not yet sufficient data regarding longer-term outcomes but Bendamustine is being used given knowledge to date. See also Treatment Considerations in MCL.
- For mantle cell lymphoma, European study continues to demonstrate the alternating R-CHOP/R-DHAP (equivalent to R-Hyper CVAD which I had) plus auto stem cell transplant provides better results than just R-CHOP plus auto stem cell transplant. R-Hyper CVAD continues to be the preferred first regime for younger patients.
- BTK inhibitors (or Ibrutinib) continue to show promising results for CLL and B-cell lymphomas, with fewer side effects and risk factors. More trials combining Ibrutinib with chemo are underway. Ibrutinib is also being tested with older MCL patients, with a 65 percent response rate. And Ibrutinib is easier to administer – just a daily pill. See also ‘Highest response rate ever reported’ in relapsed mantle cell lymphoma.
- For large B-cell lymphomas, a comparative trial between GDP (gemsitabine, desamethazone, cisplatin) and DHAP ( dexamathazone, cytarabine, cisplatin) shows that the former is better tolerated, with comparable effectiveness. to the highlights of the trials:
- Rituximab administration subcutaneously (by a needle) works as well as by iv. 5 minutes instead of two hours!
In other news, no tears for Hugo Chávez (but sympathy to his family), even if I recognize his symbolic importance to the poor in Venezuela, as he gets my cancer denialism award of the year. Not sure whether it reflects his dictatorial tendencies, general male trait not wishing to show vulnerability, or ‘machismo’ but I think most of us with a ‘touch of cancer’ knew this was coming a year or more ago.
No movies this week but we have been watching season 1 of Downton Abbey which we had missed. As with all first seasons, more fresh than subsequent ones and more tightly written, even if some of the plot twists and turns are not credible. However, it is helpful to have the back story now, as well as appreciating just how impressive the weaving of stories and characters is, and the mapping that must have taken place to make it all fit together, even if in the end is basically high brow soap opera.
Year 1, Week 29: Not Much to Report
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A quiet week. The hernia is all but in the past, and I continue to ramp up my activity levels. I restarted yoga, and apart from a few stretches, rarely felt any sharp pain. And thanks to some more winter weather, I was able to gradually – and gently – shovelling some snow. Another form of physio!
I also attended a ‘non-fundraising fundraiser’ (i.e., no pledge forms but strong messaging about how well funds are used) at The Ottawa Hospital. Really well-organized, and they have their messaging and story down pat (the mantra ‘Compassionate People, World-Class Care’) is matched by their emphasis, in highlighting success stories, on ‘talent, technology and research’.
More leading-edge work done here than I expected, although I had some confirmation while getting my second opinion from Toronto’s Princess Margaret Hospital, Canada’s leading cancer centre, of just how respected the Blood and Marrow Transplant team here is. The other message, always relevant, is how low fundraising administration costs are (20-25 percent, compared to most large cancer charities, which are in the 40 percent range), which is always something I look at.
A nice touch was being seated beside one of my nurses from 5 West (the hematology ward). Nice to catch up and, as she said, the nurses are always happy to see how patients are doing well after they have left their care.
The dinner even included a nice shout-out to my book!
We watched Wes Anderson’s Moonrise Kingdom. A quirky movie (like all of his movies), about two kids who find it difficult to fit in, one a boy scout in a camp, the other a girl from a dysfunctional family, who run away together. Never really comes together, even if it is well-filmed (the colour has a sepia tone which gives it an unusual warmth).
I continue to wade through my mafia book (The Sixth Family: The Collapse of the New York Mafia and the Rise of Vito Rizzuto). It is heavy going, and I think unfortunately, the storyline suffers through the endless details of meetings, killings, drug busts, court cases (successful and unsuccessful) and the like. I admire the authors’ detailed research but a shorter book would be more engaging.
Life continues to be good.
Year 1, Week 28: Recovery Through Walking
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It has largely been a recovery week, although a fairly easy one. While still somewhat painful, psychologically easier to deal with than the pre-operation discomfort, as I know I am on the healing track and do not have to worry about it getting worse. No major restrictions in terms of walking and mild stretches but no yoga or sports until later this week.
Some of you may recall that I bought a fitness tracker a few months ago (Fitbit). While I have always been reasonably active, I find that it does bring a further degree of mindfulness on the need to be active, particularly important during recovery.
One of my ‘mates’ at the Shouldice ‘camp’ was the champion walker – we almost never saw him sit down apart from meals – and his daughter had also bought him a Fitbit a month or so before his operation. We discussed the effect that it had on his level activity, given that he was clearly also a very active guy. He noted that it provided an extra push; rather than take the elevator up 5 floors to visit his mother, he would walk up the stairs, and a number of other examples. And even the ‘silly’ psychological tricks (e.g., messages you are close to your daily goal, badges for different levels of achievement) worked at the margin to make one more active. My experience is similar, kind of funny how sometimes the mind works, and how such automatically generated encouragement can actually be effective. I have been managing well-over the (default) goal of 10,000 steps and 10 flights of stairs daily, so things are going well.
As it was university reading week, good to have the kids home for part of the week and catch up with their news and plans.
My daughter gave me a book about the mafia The Sixth Family: The Collapse of the New York Mafia and the Rise of Vito Rizzuto by Lee Lamothe and Adrian Humphreys. Funny to be reading this as the Charbonneau Commission into corruption in the construction industry in Quebec is taking place, with a number of suspected Mafia figures ‘testifying’ like ‘Mr. Sidewalk’ about wads of cash in stuffed in socks (you can’t make this up….). More detailed than I would normally want, but it does give a sense of just how painstaking police work has to be to figure out all the connections, relationships and money flows. More a book for the cognoscenti than the general reader but it is keeping my attention.
We did, of course, watch the season finale of Downton Abbey, and, like many, became too vested in the characters and were angry about the tragic ending. However, as Julian Fellowes explains here, the only way to deal with the end of actor’s contract, particularly for family members, is to kill them off. So first Sybil, then Matthew (doubt that this is real spoiler alert at this stage). A cruel business, creating fantasy worlds!
As part of the pre-Oscar preparations in seeing most of the nominated movies, we saw Les Misérables the other day. While I liked the musical on the stage (some 25 years ago!), the screen adaptation was misérable. Not sure exactly what it was, perhaps the excessive close face-shots, the jiggly (and annoying) camera work), the lack of passion or spark in the actors, and, this may reflect changing tastes, the flatness of the music. A stage production allows one some distance, as some reviewers have noticed, this film version is in your face, and too much so (see NYT review here), with its final comments on director Tim Hooper (who also directed the wonderful The King’s Speech):
But his inability to leave any lily ungilded — to direct a scene without tilting or hurtling or throwing the camera around — is bludgeoning and deadly. By the grand finale, when tout le monde is waving the French tricolor in victory, you may instead be raising the white flag in exhausted defeat.
Looking forward to the annual shlock that is the Academy Awards tonight – always fun, even if I suspect I may disagree with some of the winners.
My Lymphoma Journey 