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.
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.