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!

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Week 24: On the mend

In the end, my stomach bug proved not to be a bug but rather minor (although it didn’t feel that way!) GvHD. I was prescribed steroids (Prednisone, stronger than the Entecort I earlier had) and, as promised, felt the effects within 24 hours.

My stomach still burbles, but the cramps and the vomiting are gone. While my appetite has improved and my weight stabilized, getting back to a normal diet is taking some time – whenever I ‘push’ myself too much with food, my stomach tells me quickly enough to back off. So I tend to dream about the foods that I will be able to eat shortly, rather than eat them now!

Getting through this and the associated worries was more taxing than I expected; in speaking of my worries with the clinical doctor, she said not to worry, this is normal, you will get through this, but – there is always a but in this marathon – as a transplant patient these kids of bumps in the road will happen from time to time.

It has also been a week of tests. Another abdominal x-ray for a quick check and my ‘graduation’ CT scan to ‘close’ this part of the file. Given my previous discussions on the need for a CT scan, challenged this and was told that given my stomach problems – and the ‘close’ the file 6-month timing – this was recommended.

My CT scan came back the next day ‘perfect‘ with no signs of lymphoma, very good news. This will likely be one of my last CT scans as after this, they move to annual MRIs – less resolution but no radiation, as I have had enough through all the scans and treatments. And I still need a brain and spinal MRI to check whether any activity there.

All my blood work continues to be good. No liver or kidney issues, and my counts are strong.

I will likely be on the Prednisone for a number of months. Hopefully, things will settle down during that time period. Although I am on a quarter-dose, there are longer-term side effects (like for all medication) that I would like to avoid if possible.

Hopefully with this bump over, I can finally graduate – two clinic visits in a week is too much but when it’s needed, it’s needed.

I have been reading Niall Ferguson’s The Pity of War, his history of the reasons behind WW I. It is one of his heavier academic books, in contrast to his more breezy popular survey histories, and is convincing, at least to my relatively general knowledge about the War, in discounting some of the more traditional theories. What is always interesting is the decision-making process in the various countries, the imperfect information, the miscalculations, and the political factors that come into play in any such kind of international conflict.

We went a concert of classical improvised Iranian music by Hossein Alizadeh and Pejman Hadadi (link has music samples). We have seen them both as part of a larger group (Dastan Ensemble) and it was a great evening and concert.

Although the weather has been really bad this past week with freezing rain etc, have been getting out more and back a bit into my walking routine. Feels so good to no longer be cooped up inside the house after 10 days or so.

The week ahead will continue to be a recovery week, building up my weight and strength. No clinic visits unless I have any issues, so here’s hoping.

Week 19: Merry Christmas

First of all, Merry Christmas on this Christmas day. Only a dusting of snow today, but it is still that time for a good family gathering and seeing friends. In addition to our children, my brothers are here, and we have lots of calls to other friends and family who are scattered around the globe. Technology that both disperses and brings us together.

Health wise, I continue to adjust to my post-med stage. No major changes, and at the clinic this week, the clinical doctor said all these effects (increased fatigue, stomach burbling and no longer a large appetite etc) were a result of the GvHD playing out, rather than any reaction to the flu shot or something else.

I can take the Entecort again for the holiday meals if that helps me enjoy them more (so far, see no need to do so, as I am eating normally and my weight is stable). My slight rash has gone away, repeating the normal pattern of flaring up for a time after a reduction in the immunosuppressants. And the antibiotics and my own immune system have dealt with the inflammation of my Hickman line.

These ongoing effects, plus a slight dip in my blood counts (perhaps due to my fighting a virus), had this doctor put me back on a two-week recall. So I have ‘de-graduated’ or be sent back remedial training, whatever metaphor you prefer, for a little more yet. Once again, the ongoing difference in doctor approaches: she told me that they do not normally make medication changes so close to holidays but that the senior haematologist, who I saw two weeks ago and stopped the meds, has a more ‘just do it’ style. We will see what he says if I see him in early January!

I am well enough to start again normal ‘maintenance’ over the next few months: getting my annual physical, seeing the dentist, and getting new glasses. We also chatted about scans and she is in that these are more ‘academic’ than necessary.

I mentioned to her that I was willing to talk to other patients about mantle cell lymphoma and stem cell transplants (had done that with one person, apart from on-line) and they do have an informal ‘buddy’ system and will add my name to the roster. She noted that some people prefer the individual approach to group discussion (me too) and this is offered on a responsive basis.

Some great movies this week. Mr. Smith Goes to Washington, the wonderful Frank Capra movie about political corruption with James Stewart the one honest and idealistic politician (required viewing this holiday season for Washington, Ottawa and other capitals given the level of political discourse these days).

We also watched The English Patient, the good adaptation of Michael Ondaatje’s novel. Powerful story, great cast, beautiful camera work, and wonderfully edited going back and forth between the present and the past. Although I have not read it, The Conversations: Walter Murch and the Art of Editing Film by Michael Ondaatje is an interesting conversation on the similarities and differences between story telling in the novel and in film.

I also had my first guest blog with MD Anderson’s Cancerwise. From a content and writing perspective, provides another reflection route as I have to think more carefully about the target audience (and editor). Next guest blog slated for mid-January.

I have largely completed integrated family facts, documents and photos into the family tree. I am almost ready for the next phase which is using the various web tools to supplement and confirm the information I have; it will be interesting to see what the various genealogy-related websites and archives have.

So looking forward to a nice Christmas Day with the family and the holiday week. I hope all of you enjoy this time when society slows down (apart from Boxing Day excessive consumerism) to be with family and friends.

Week 15: Moving Further Down the Transition Path

Overall, have continued on my strong recovery track, with slow and steady progress.

A friend asked me what has changed this time. The spontaneous answer that came out was not the deeper questions about the ‘meaning of life’ and priorities (the first stem cell transplant did that!) and the enhanced appreciation for family and friends (in the end, it is about the people who are important in my life).

It was  more my appreciation for the smaller things. These range from our walks together outside,  the pleasure in figuring out the intricacies of the family tree, savouring and enjoying food, and even to the mundane washing dishes and shovelling snow. They all remind me of being alive and being able to do things. Expect as I move along the recovery path, these will return to being taken for granted to a certain extent, but hopefully not completely.

Another change is I tend to procrastinate less. I have a more acute sense of time (the awareness I may have less of it), and the need to use it, and so things get done more quickly with less delay (and I use lists to keep me on track). Funny that on the bigger things, I have greater patience with time (the universe will unfold in due course …); on the small things, I just want to get them done to have time for what is more important.

This week was Clinic Week and I am transitioning more quickly than expected to the next stage. A bit confusing and surprising as the roadmap keeps on changing – but I was always warned that my treatment was more bespoke than standard and that it would be adjusted according to how I was responding. This recap of my last 4 clinic visits:

  • 25 Oct: We discussed the need or not for a scan with the clinical doctor and came to the conclusion no scan needed given no treatment implications.
  • 1 Nov: The senior haematologist was adamant about the need for a scan to check my lymphoma given treatment implications and opportunity to ‘steer’ my immunosuppressant dose (Tacro)  to increase my GvHD if needed to combat my lymphoma.
  • 8 Nov: The Fellow reduced my Tacro to half-dose but with a scan still planned.
  • 22 Nov: This week, another of the senior haematologists took me off Tacro completely and reduced my Entecort (steroid for stomach) dose, with no scan planned until 6 month mark in the new year.

As it is a group practice, with cases reviewed weekly or biweekly as needed, I am comfortable that all of this has been hashed out by the doctors. I did mention to the haematologist the different things I had heard from all the different doctors and how it is confusing to me. She simply stated that there are differences of opinion and that there is not an automatic right response to many of these questions. Constantly adjust the approach depending on the patient’s situation and closely monitor seems to be how they do it.

Interestingly on the scan question, she again noted different approaches but, with a smile, part of the reason for doing scans is to ‘complete the file’ for research purposes, rather than patient benefit! So bureaucratic procedures are not unique to the bureaucracy (not to diminish the research reasons).

In the end, not unhappy with the change, as I prefer fewer scans to more (have had more than enough radiation etc over the past few years) and am being ‘steered’ in any case. Sort of like having my cake and eating it too!

No major side effects since stopping Tacro (burbling in stomach seems to be the main way my donor tells me he is there, some very minor rash activity). So I have reached another milestone more quickly than expected (thought this would be more at the 5-6 month mark). Howevder, as the haematologist reminded me, I am not out of the woods and can still get GvHD, so it is more the one-year mark that will be the next real milestone.

I asked what the impact of stopping the immunosuppressant would be on my immunity and she noted that it would help but it will take time (no Handel Messiah this Christmas). But for the moment, things going well, and they are very pleased with my progress.

In terms of other issues, I raised issues of toe tingling and numbness, as well as occasional leg cramps and pain. The first may be tail effects of chemo and should dissipate over time. The second is the normal reaction to building up muscle strength and again should go away over time (my tests this week were walking up 5 flights of stairs given a slow elevator – the first 3 were easy, after that more huffing and puffing!, and shovelling snow which was easier than expected)

And on the trivial milestone side, my internet access to the hospital expired and I realized I did not need it given the reduced frequency of my visits!

For Woody Allen fans, we watched Woody Allen: A Documentary on PBS this week. Great sympathetic portrait of his work over the past 40 years, well put together between interviews of him, his close collaborators and critics, interspersed with some great clips from his films. Really fun to watch how his films have developed over the years (including the clunkers). Assume it will eventually be available on iTunes or other services. Of course, if you are not a fan, there are other ways you would like to spend 3 hours or so!

An update on my consumer curmudgeonly complaints:

  • Best Buy corporate office got back to me, asked a few questions, and quickly resolved the Price Match issue by giving me the appropriate credit. Back in my good books, particularly that they mentioned they would provide feedback to their call centres for future such issues.
  • Sears continues to fluff it. Corporate referred it back to their call centre staff, who offered less than 10 percent of the amount at issue. I refused and told the agent to escalate the issue – I had not written to the Corporate Office for my concerns to be dismissed in that way. To be continued – the issue is not just the money but respect for clients – so far, Sears failing on both aspects.
My son and my brother are here this weekend for a belated birthday celebration. As always, a real pleasure to have him around the house and chat about what we are both up to. We spent more time chatting together rather than watching movies, along with his sister. Good connecting time.

Looking forward to my Clinic-free week. While there are a number of movies we want to see (at deserted matinées – Margin Call, My Week with Marilyn, in addition to catching up with some of the older movies that may or may no longer be playing), the weather has been so good we have focussed on walks. Never thought I would hope for a day or so or bad weather!

For my American readers, I hope you had a good Thanksgiving with family and friends.