Week 50: Clinic Update – On Track

A good week with my cough finally gone.

At my last clinic visit before my one year anniversary this week, I continue to do well in their eyes, confirmed by how I feel.

We are starting to make some of the changes related to being around the one year mark, a welcome transition.

Highlights:

  • Prednisone (the steroid) will be phased down from alternating between 10 and 5 mg each day to alternating between 10 and 0 mg for one month. This is to ‘kick’ the adrenal glands into producing cortisol. I may feel crummy for 3-4 days until this effect happens. After one month, this will further decrease to 5 and 0 mg. Should of course the crumminess continue, they may delay phase down. As of this morning, minimal crumminess, so I am lucky once again.
  • Septra (to reduce the risk of pneumonia) will end shortly, shortly after the one year mark or when Prednisone stops.
  • Acyclovir (to prevent shingles) will continue indefinitely given I have a drug plan. I cannot have a shingles vaccine as it is a live vaccine and my immunity cannot handle that.
  • I need to start taking vitamin B12 given that rebuilding my bone marrow has depleted my stores. Progress when I am prescribed only vitamins!
  • She also reviewed all the tests I have had over the last 6 months: CT scan, MRI, bone density test. All good. My pulmonary function test (PFT), the day after, confirmed what I knew: no issues given my walking and biking, and even a slight improvement.
  • Blood counts from last month were all good and stable. Hemaglobin remains slightly anemic which is natural post-transplant. My creatinine (kidney stress indicator) level was in the normal range, rare and good for me. Will have to see whether any post Europe bounce evident in the counts taken this week.

A good discussion on how I was feeling overall. I said, all things considered, very good. I was able to bike, walk, travel, be intellectually active, enjoy family milestones like our daughter’s graduation (with our son’s university graduation being the next milestone), and too busy to be depressed. She noted that it was very rewarding to her and others in the team to see patients doing as well as me, a real validation of their work and, of course, my family’s support. I noted that, of course, we are aware things can change, and that I tend to think in 3-6 month blocks, so as not to jinx things yet have a reasonable planning horizon.

I gave the Blood and Marrow Transplant team at the clinic as well as on 5 West (the hematology ward)  chocolate from our trip as a small thank you. Amazing how well this small gesture is received, but it truly is heartfelt by me and my family. I also mentioned my forthcoming book to her as I don’t want my medical team to be surprised if my marketing strategy works!

Another round of ‘re-vaccinations’ so sore shoulders and a new reaction, a rash on one that lasted a few days before going away. No more until next January then done.

While my book is being edited, I have been converting my Prezi into a video podcast. Like everything, the concept is simple, but Prezi does not have a simple ‘save as movie’ function, so yet another piece of software to learn (Screenflow). I have a renewed appreciation for post-production and the relative effort between the creative, fun part, and the necessary but less fun detailed ‘getting it out of the door’ part. Hopefully, will get this finished next week.

We of course watched the Olympics opening ceremony. While these all too often present an over-sanitized history, the British tradition of story telling was more refreshing, both for some of the quirkiness and wit but from the almost ‘subversive’ tone given current economic and social orthodoxy. A nostalgic portrayal of the former pastoral life, the grimness and inequities of the Industrial Revolution, the social struggles that followed, the importance of universal healthcare, and a celebration of modern, multicultural Britain (putting Canada to shame as Vancouver largely missed that opportunity).

Funny to see one British MP tweeted ‘multicultural leftie crap’ (and while Downing Street disowned these comments, the British Prime Minister last year had declared ‘multiculturalism is dead’). The MP in question, demoted earlier for attending a Nazi-themed stag party, may yet suffer another demotion – but expect others may have shared his views, if not publicly. Not quite Occupy Wall Street (with better production values!) but a reminder of the importance of equality, the social safety net, and multiculturalism for all those viewers worldwide.

A nice contrast from the absolute ‘on message’ approach of Beijing, and the value of democratic systems and their respect for artistic and institutional independence (Danny Boyle, the producer, confirmed this independence).

The choice of Hey Jude to close was interesting. While written to console John Lennon’s son during Lennon’s divorce, it was also interpreted at the time as a drug song (The minute you let her under your skin, Then you begin to make it better), perhaps conscious or unconscious irony given Olympic history of performance enhancing drugs.

David Brooks also had an interesting piece on the Olympics (here), where he noted the contradictions between cooperative and competitive values, how the opening and closing celebrations represent the former, and the actual events the latter, and how such contradictions are part of human nature and our institutions.

He could have taken this further into social and economic factors. In one sense, the Olympics represent formal equality of opportunity (all athletes are equal with an equal chance to compete), a fundamental liberal concept. However, watching at the Parade of Nations, interspersed with all those commercials, one is also struck by the disparities in size and resources available to athletes, by country and sport. Social and economic support makes a difference in getting to the podium. Some professional leagues address this through revenue sharing with improved competitiveness among teams, others like the Olympics do not. While we appropriately focus on the dedication and commitment of the  athletes (and their families and friends who supported them get there), the Olympics does have an aspect that reflects and emphasizes today’s increased inequalities.

Enough editorializing for the week! I will continue to enjoy the summer weather and our usual walking and biking.

2 more weeks to go – almost there, and on to future milestones.

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