Year 1, Week 23: ‘Freedom’ 55

1:23

I made it! Formally retired now, another birthday, and reasonably healthy. Hard to complain.

In many ways, more of a formal than real transition, as I effectively left work May 2011, having been on a mix of sick leave and long-term disability. No need to adjust to a new way of life and new priorities, as I am already there. However, it does bring me more piece of mind, knowing definitively that the working phase of my life is over, and that I am no longer subject to the normal constraints of working for the government (or any large organization for that matter).

I realize just how lucky I am with a strong and generous disability insurance and pension plan, plus with the ‘luck’ of my lymphoma happening late enough in my career to allow me to qualify.

From a broader perspective, the current discussions on pension and old-age benefits eligibility in connection with the aging of the population, while necessary and important, are all based on average life span and health. But for those of us who are on the unfortunate side of the average, their needs also should be taken into account in any changes. Just like the discussion on survival odds; while the averages are helpful and have to be the basis for informed decision-making, in the end it is my individual circumstances and chances that concern me, not the average.

And while the Janis Joplin line, ‘Freedom’s just another word for nothing left to lose,’ doesn’t quite fit, for my freedom from work is accompanied the background awareness of my lymphoma, that I have been successfully (to date) treated but not cured. Nor does the Stones ‘No, you can’t always get what you want, But if you try sometime, you just might find, You get what you need’ fit perfectly either. But somehow both of these resonate, capture important elements of where I am now, wash over me, and allow me to keep this background awareness of my ongoing vulnerability in the background.

I had fun doing the interview on our local cable TV station. Some of my earlier media training came in handy, and a good challenge to condense some of the key messages into a 5 minute segment. I will get the media file and post it shortly.

It has been a good movie and TV week. We are back into following Downton Abbey – light and entertaining, even if some of the plot twists are more than contrived, and visually, with all the old elegant interiors and costumes.

life of piMovie-wise, two very contrasting films. Ang Lee’s adaptation of Yann Martel’s novel, Life of Pi, is a must see. A hard book to adapt to the screen, but done successfully with a delicate touch, and visually just stunning (see the 3D version as it really works). And using the device of Pi telling his story to the author of his story helps make the story both come alive and yet have distance and reflection, allowing for a beautiful and reflective ending.

From this nuanced ambiguity to the harshness of Zero Dark Thirty, the story of the search and killing of Bin Laden. Many of you are familiar with the controversy of how torture has been depicted as being one of the essential elements in intelligence gathering (see Steve Coll’s ‘Disturbing’ & ‘Misleading’ for one of the better critiques). The film certainly shows the US at that period having lost its moral compass, without capturing some of the internal debate among the intelligence community about the usefulness or not about torture.

0D30Interesting, it does capture the fear of some of the CIA agents with the upcoming change of administration, given that both Obama and McCain were against torture, McCain particularly strongly so given his own personal experience as a POW tortured by the North Vietnamese. To be fair, a large part of the film concerns the painstaking and time-consuming detailed intelligence work of putting together the pieces to allow the raid to take place.

But apart from this controversy, I found it more a workmanlike film, competent, not extraordinary, and not sure why it has been so highly praised by many critics. It is an important film to watch, given how much 9/11, Bin Laden and ongoing concerns of terrorism and security shape our lives. But not a best picture.

cohenI finally finished I’m Your Man, the Sylvie Simmons thorough bio of Leonard Cohen, one of my favourite artists, and a Christmas gift from our daughter. I have mixed feelings reading all the details of his life journey; while it captures his ongoing personal discovery and exploration, somehow knowing more of the personal ‘messiness’ of his life brings me further away from, rather than closer to, his music.

And the fundamental paradox, Cohen is able to express longing and love more deeply than most while being unable to live it; all of his relationships have a strong element of separation. The hedonic impulse, not able to transcend for longer term commitment. But maybe all artists share this paradox, part of what gives them their particular insights and art.

Health-wise, addressing some of my normal issues. Have been doing all the tests and preparation for my hernia, which will hopefully take place some time next month, as it bothers me more when I’m more active. And had my hearing test, confirming what I know, that hearing aids would be helpful. But still not sure I want to go down that route as in most situations, I can function just fine, and I know longer have group meetings at work or elsewhere that I really have to worry about.

Week 25: Slowly bouncing back

It has been a slower recovery than expected. The Prednisone ‘fixed’ my GvHD gut issues, but the short-term side effects hit me, mainly heartburn and headaches. So a fair amount of discomfort but not enough to prevent me from resuming some short walks, seeing and talking to some friends, and getting back into my regular program of reading and the family tree.

And the good news was that by the end of the week, I no longer had to dream about food with flavour but was largely able to eat what I wanted (but in moderation of course) and work on regaining some of my weight.

I will discuss with the medical team when and whether I can start reducing the dose to see if that relieves the side effects. Ideally, I would like to go back to Entecort, the less powerful steroid that only affects the gut, as this worked well for me in the fall (but of course that was also when I was on the immunosuppressant Tacrolimus, and so my situation is different now). Always good to raise the issue and see what they say  - expect I will have to be on Prednisone for another 2 weeks or so before we start playing with the dosage or medication again.

We made it out to see The Iron Lady which, despite the mixed reviews and some of the controversy about portraying her in her old age with her hallucinations, we found to be very sympathetic to her human side. The portrayal of her relationship with Dennis was touching, as was her struggle to make it in a party, and a society, where privilege counted. The compromises she had to make with her kids, and the aftermath, were also sensitively portrayed. A more interesting and successful portrait than I had expected and as usual, Meryl Streep was superb.

We also watched In the Heat of the Night, the Norman Jewison film about 1960s Mississippi and the racial and other tensions between the two leads, Sidney Poitier and Rod Steiger. Still a classic, for the characters, the story, and how it captures that period and place in America – not pretty.

I also finally got around to reading the Steve Jobs book by Walter Isaacson (my hints of what I would like for my birthday were answered). Many of you have likely read the main excerpts. It is an easy read, even if Jobs is so frustrating and annoying in many aspects of his professional and personal life. However, his genius in being able to focus and simplify, see ‘where the puck is going’, and be at that intersection point, as he puts it, of liberal arts and technology, is amazing (disclosure: apart from an old PC, all our products are Apple now).

It also made me reflect a bit on leadership in general. The government context is different. ‘Insanely great’ largely does not work as government is intrinsically more consensus-based and cautious, with a focus on stewardship. Strong change leaders are often weeded out and the dynamic between the political and bureaucratic levels also plays out (for American readers, Canadian senior officials are from the public service, not political appointees – think Yes Minister series).

I was lucky enough to work for a change leader, and while not without some of the warts of a Steve Jobs, it was incredibly motivating, and we were able to do really innovative things. But too much so for the government – risk concerns – so a more conventional leader was put in place (and I moved as the excitement was gone). Similarly, having a dynamic Minister changes everything, and I have also been fortunate to have worked for one. So even in my comparatively protected environment, I have some appreciation for how quirks, good and bad, and charisma motivate people.

The latest Leonard Cohen album, Old Ideas, came out this week and I really enjoyed discovering it. Come Healing (click to listen) is my favourite track (has some echoes of Anthemn that also speaks to me). Some sample lyrics:

O see the darkness yielding
That tore the light apart
Come healing of the reason
Come healing of the heart

O troubled dust concealing
An undivided love
The Heart beneath is teaching
To the broken Heart above

O let the heavens falter
And let the earth proclaim:
Come healing of the Altar
Come healing of the Name

O longing of the branches
To lift the little bud
O longing of the arteries
To purify the blood

And let the heavens hear it
The penitential hymn
Come healing of the spirit
Come healing of the limb

Had some good visits and chats with friends this week. Along with walking again, it always feels good when one gets out of isolation!

And lastly, on a more mundane level, my January Stats of the most popular page views apart from the Home Page.

  1. Chefs, Butlers and Marble Baths – Not Your Average Hospital Room – NYTimes.com
  2. A Sharper Mind, Middle Age and Beyond – NYTimes.com
  3. Really? The Claim: Listening to Music Can Relieve Pain – NYTimes.com
  4. Secrets of Cancerhood Blog: Things Not to Say
  5. Elderly ‘Experts’ Share Life Advice in Cornell Project – NYTimes.com and A doctor’s letter to a patient with newly diagnosed cancer

Should be another recovery week if all goes well. Objective is to gain back some of weight I lost – I now know I should always have a bit of a reserve!

The Good Short Life With A.L.S. – NYTimes.com

A nice reflection on the quality of life, not just the quantity of life. Some common themes of living your life, friendship and family, the impact on others, and the ability to face and discuss mortality. And of course I was hooked by his reference to Leonard Cohen’s Dance Me to the End of Life as his own, personal metaphor and motto.

The Good Short Life With A.L.S. – NYTimes.com.

A few more weeks

Paris was good for me – I now have the data to prove it. All my blood counts have improved, particularly my haemoglobin and creatinine (kidney stress). So getaways are good for the body as well as the soul.

I had a good clinic visit with the senior haematologist walking through what we heard from Princess Margaret Hospital (PMH) and related questions and issues. I summarized, noting their agreement that a stem cell transplant (SCT) was the recommended option with the need for a bone marrow biopsy, and provided him with a copy of my blog entry.

While pleased that the overall recommendation was the same as here in Ottawa, he indicated that the biopsy was not necessary as it will not show anything new. The presence of lymphoma in my central nervous system showed that the lymphoma was systemic (the PMH doctors had also noted this), and whether there are a few more or less cells showing this would not change the recommended course of treatment. He would, however, schedule a biopsy as part of the normal pre-transplant re-staging that takes place. A reasonable explanation to my lay ears, but pleased that he agreed to have the biopsy done in any case.

No update on donor status but will get an update next week. He referred again to the 3-6 weeks to arrange the transplant, with timing is now more August than July. I expressed surprise and concern, expecting some of this time to have already elapsed. He replied that while the transplant may seem like a ‘mirage’, ever receding, the medical team here needed the certainty that we would proceed following the PMH second opinion before setting everything in motion.

A few more weeks of comfort have I. Half-joking, I said we would like to go back to Paris if we must wait! He took this seriously (they are very supportive of things that help us get through the waiting period). So something else to consider once the time frame confirmed.

No real discussion of the protocol and treatment plan at this meeting, just noting (again) full-body radiation will be part of it. August timing would likely mean I will not need any more chemo to keep me stable. I asked what about immunotherapy (Rituxan), and he replied any effect would be marginal and not needed.

I challenged him a bit on the different communication styles of doctors, and how some preferred a ‘shock and awe’ approach while he was much more reassuring. He laughed, acknowledged the point, but placed it in context of the seriousness of mantle cell lymphoma (i.e., no great options). While the transplant was serious and risky, he responded effectively with the following:

  • he had nothing else to offer that would get me to next summer;
  • the normal tendency was to dramatize side effects and risks (citing the detailed description of risks that accompanies Aspirin);
  • I got through the auto SCT relatively easily;
  • I have read and am well-informed enough to make a decision (never 100% certainty); and,
  • overall, given the alternative, the risks were worth taking.

And he ended with a compliment that I had worked through the issues in a very timely manner (I noted that not having much time helped!) but clearly he has other patients who find it harder for their own valid reasons to make this decision.

He ended up by turning to my wife to make sure she was OK (a bit overwhelmed as we all are),  noting that while there was little support during the waiting stage, support would kick in during the transplant.

I also had a good meeting with the social worker, working through my impressions and reactions to the different communications approaches of doctors (noting for me,  these different approaches help me sift through of information but others may react differently), and my feelings about some of our family dynamics as I undergo the transplant where another joint session before may help. She also gave some practical advice: worry about the transplant first as any Graft versus Host Disease effects are subsequent to the transplant phase. ‘Chewable chunk’ approach.

On the life and living side, lots of long walks and enjoying the summer weather. Our son is back again this weekend and we have been experimenting with new barbecue recipes, quintessential Canadian summer activity and father-son bonding!

Some interesting movies this week. In the ambitious but failed category, Terrence Mallick’s The Tree of Life (pretentious, incoherent and silly) although we also watched his Thin Red Line, which is much more focused and effective, although still with his meandering traits. And lastly, Of Gods and Men, the French movie about monks who decided to remain with their village during the period of violence between the government and Islamic groups in Algeria – a very powerful depiction of the positive power of faith, and the courage that accompanies it.

I read And Then They Came for Me, Maziar Bahari’s recounting, as a Newsweek journalist, of Iran’s Green Revolution and his subsequent imprisonment.  Not as sophisticated as Haleh Esfandiari’s My Prison My Home, but lots of common insights into Iran, the interrogation process, courage and ways to keep one’s sanity, and the importance to international pressure to get them released. And with some wonderful asides on Leonard Cohen (his strongest Canadian connection), both his cynical side (Everybody Knows as Bahari realizes the election results will be fixed) and on the romantic or hopeful side (Sisters of Mercy which comes to him while in prison). Another strong, powerful and depressing account of today’s Iran.

Saint Francis in Ecstasy

And lastly, we saw the Caravaggio exhibit, a nice manageable size contrasting his style of painting with others of the Renaissance, and how he was one of the key painters bringing a more naturalistic style.

Hope to get a few more details on treatment plans and timelines this week that will help me figure out how best to use the waiting period. As I understand it, things can move quickly once the donor is confirmed, and while I am enjoying the current break, my normal inclination is to get on with it, once I make a decision, so hopefully the break will not be too long.

A Much Better Week

Audio is the London Live Version

Things got back on track this week.

First, my wife got better, and we were able to get back into our routine of regular walks, even if the weather was mixed.

Secondly, things at the clinic started to move. One brother flew up to do his blood work, and arrangements were confirmed for the other to do his in the States early next week. I finally got an appointment for the second opinion at the Princess Margaret Hospital (PMH) for June 6th. And my counts at the end of the week had bounced back, allowing for another round of chemo next week rather than a further delay, although my haemoglobin remains low, reducing my energy level.

All of this was a reminder of how the healthcare system is a big bureaucracy, and how I have to use my bureaucratic skills, honed after 30 years of working for the government, to advance my case. For example, the delay in getting the second opinion appointment was caused by my haematologist and the clinic in taking 3 weeks to get the requisition to the PMH, not the PMH which responded in about a week. So track, follow-up and be persistent.

I have asked for a full copy of my file plus CD of my images (requested by the PMH) to ensure I have everything, and make things easier should we decide for a third opinion.

I also had a good appointment with the clinician who is more generous with her time. I asked about whether the ban on driving remained given that I no longer appear to have the headache and vision symptoms as before. It  remains, although some flexibility for short distances in the city (no highway driving) and not during rush hour. And no biking – as she said with a smile, think of the risk and how you will feel if something happens like ‘breaking open your skull’ that delays your treatment plans! And I also pressed for Neupogen for the next round to reduce my period of low immunity (fortunately covered by my drug plan).

On a personal level, it has also been a good week. Our daughter turned 17 so we had a nice family celebration, joined by our son visiting for the Victoria Day weekend. The weather has shifted from cold rain to nice spring weather, the flowers are in bloom and the trees are green, wonderful renewal and growth, making our walks more enjoyable.

With our son the film buff here, watching some interesting movies together as a family. Repulsion, an early Roman Polanski film with Catherine Deneuve, captures one woman’s descent into madness and paranoia – a really uncomfortable film to watch but one that demonstrates his skills as director. And Limitless, an interesting concept but not successful thriller about what happens with a miracle drug that makes one smarter (bit too Hollywood, makes lots of money, gets his girl back, and then becomes a politician to save the world!).

I did not go into the office this week as my counts were still a bit low at the beginning of the week but will do so Tuesday. And time to hand in my laptop and Blackberry, thus marking a further transition, although I will still have access to corporate email through my desktop (and eventually iPad).

I am currently reading Bloodlands: Europe Between Hitler and Stalin, by Timothy Snyder. It is a powerful book, capturing the atrocities committed by both Stalin, in the name of collectivization and the ‘revolution’, and Hitler, in the name of ethnic purity and cleansing, and the linkages between the two, in a manner that does not diminish the centrality of the Holocaust in terms of the unprecedented nature of the ‘final solution’. There is a fair amount of controversy on this point to which Snyder replies to in this article. Given my work with affected communities, very helpful to broaden my understanding. Highly recommended but not an easy read. This is also my first e-book; while I miss the tactile sense of turning pages, so much more convenient!

I have started adding to my blog some health or life-related articles that I find interesting – I will try to be judicious in my selection.

Next week will be another hospital week, with the same kind of chemo as before (Ara-C or Cytarabine), given that it is easier on my kidneys, although harsher in other respects. The usual triage decisions we have to make!