Week 47: Paris

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Wonderful being back in Paris, seeing some friends, the usual beautiful walks, discovering some new cafes (and rediscovering some old) and the comfort of being in familiar surroundings (one of the asides of the Coates book on stress is that a familiar location with people one knows is less stressful than a new location).

We saw some good exhibits. A retrospective of the work German artist Gerhard Richter, at the Beaubourg, who has an incredibly wide range of style, ranging from landscape to portrait to abstract, colour range from monochrome to bursting with colour. My favourites were the large abstracts, where his sense and use of colour is amazing.

Two very different shows at the Grand Palais, one on how our portrayal of animals has changed over time, and a retrospective of Helmut Newton, the well-known fashion photographer. Both equally impressive shows in their own ways, with Newton’s portraits particularly impressive.

One of the funny things was that the apartment in which we stayed was old and had a very uneven floor. I really felt the neuropathy in my feet and had to pay attention, so as not to lose balance.

Unfortunately, as the week went on, my cough came back. Eventually saw a doctor and now have meds to reduce the inflammation in my throat and the cough. Very good experience with the French healthcare system, no wait, good and thorough exam, and only charged about $30. Nothing serious, but has cramped the last few days of our trip. I should have worn face masks on the various planes and buses, given all the air and microbes recirculated. My ‘new normal’.

I did take advantage of the train to Southern France to read Nazanin Afshin-Jan’s book, co-written with Susan McClelland, The Tale of Two Nazanins (disclosure: I know her professionally), about how she used her celebrity to save the life of the other Nazanin in Iran, who had killed her attacker in self-defense, and where the combined class, ethnic, and religious biases meant the Iranian Nazanin had little chance of acquittal. A sharp contrast to the social milieu of the main family depicted in A Separation.

While I understand the story telling rationale for presenting these as two parallel stories, and the contrast between the gloss of the Canadian Nazanin and the grittiness of the Iranian Nazanin, it didn’t completely hold together for me, until when the Canadian side became equally gritty on the campaign to free Nazanin. it was really only when she talked about how she mobilized people that the two stories really came together for me, and became more compelling as a result.

Some interesting asides in the book. She complains about the few Iranians who attend her public events during her campaign, without perhaps a full appreciation of the challenges that many have, given ongoing family and other relationships in Iran (Nazanin’s family, for understandable reasons, would appear to have none). She is perhaps a bit overly defensive over criticism that she used the campaign to increase her own profile – all celebrities do, and as long as the cause is sound, no shame in such synergy. Her summary of Iranian history skips too quickly from the Arab conquest of Iran in the mid 7th century to the Islamic Revolution of 1979, without mentioning key periods like the Safavid Empire 1501-1722, which not only led to an Iranian Renaissance, best exemplified by the art and architecture of Isfahan, the development of Shia Islam, but also a relatively open period for other religions and groups, many who were brought in for their artisan and craftsmanship.

And surprising, in a book based on human rights, remarkably little on the overall human rights framework, no mention of the 2009 elections and repressed Green Revolution, and a rather naive idea for a United People of Iran and United People project, while useful in highlighting the limits of the UN and international system, is unlikely to be as effective as some targeted campaigns can be (as she showed through her successful campaign).

In terms of relatively recent books on Iranian society and the prison and judicial system, other books include Marina Nemat’s, Prisoner of Tehran, Maziar Bahari’s, Then They Came for Me, and Haleh Esfandiari’s My Prison My Home, all of which provide a deeper understanding of contemporary Iran, and, with the exception of Marina’s, have the common thread of outside pressure to free someone from an Iranian prison (Nazanin’s achievement was to do so for an unknown).

Despite my cold, has been very good last few days with friends here.

Hopefully the flight back to Canada will not be too painful, and I can finally kick this cold and get back to my normal routine.

5 weeks to go!

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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.