A good clinic visit started off the week. The new routine seems to be that the nurse, then the haematologist, bound in, take a quick look at me, ask a few questions, and remark that I look well. Much better than the alternative, and kind of funny that with all the fancy equipment and tests available, the basic ‘look one over’ says all.
Some specific points:
- My MRI was good, with no change. I asked for more detail about whether or not the leptomeninges had diminished or remained stable, he noted the report simply said no signs of lymphoma. However, he added, that the presence or absence of symptoms was a better indicator than a MRI, as the situation can change relatively quickly. The implication being that I should not count on the MRI, but still a better result than the opposite.
- A radiologist friend provided more detail on my MRI. In essence, there has been a slight decrease in the leptomeninges damage seen earlier. As he explained, like any trauma, the healing process is slow, but it appears to be happening. Good news.
- No plans to change my Prednisone dose (currently alternative between 5 and 10 g per day), to provide me with stability over the summer (at least until my SCT ‘birthday’ in August) and that side effects are not an issue at this low dose.
- As noted earlier, my iron content in my liver is higher than normal (reflects the large number of blood transfusions). Unlikely that they will ‘bleed’ me to reduce the level as my overall haemoglobin level is not high enough and no major issues with it remaining high.
- Asked about sun exposure, noting that I am careful with clothing and sunscreen, and whether I should be ‘prudent’ or ‘paranoid’ about sun exposure. His reply: ‘Never good to be paranoid’ but be careful.
- I am also cleared for further travel and my next clinic appointment is scheduled before a possible trip this summer.
- No blood work needed given I provided him with my results from my physical from a month ago.
I showed him my draft Prezi (link here to non-narrated version, comments welcome). His interest was more in how the technology worked, how he could use Prezi to liven up his presentations (with flexible navigation among ‘slides’ to make presentations more interactive), and how long and hard the learning curve is (he has a presentation coming up in a few weeks). He noted my draft Prezi was more of interest to support groups than doctors, where some of my slides may be helpful for people starting their own ‘journey’.
I underwent a cognition test, part of a study of the medium-term effects of stem-cell transplants (now at that stage I guess!). A range of tests ranging from simple reflex tests (pressing the space bar when one sees a shape), to more challenging working memory tests that invoke system 2 thinking, to invoke Kahneman’s terminology. Examples include remembering 15 words, 15 shapes, the stroop test (correlating shape and colour), and a sequence remembering test. Curious to see my results which I should get shortly.
In discussion with the pre-med student conducting the test, I noted my perception that I was not as ‘sharp’ as before, particularly with respect to short-term memory. She noted that people who have been in jobs requiring concentration, analysis and thinking often have this perception, as they notice any difference, even when formal testing shows it to be very small. We live our subjective reality – I certainly noted this effect when I returned to work in 2010 after my first stem cell transplant, and had to find ways to compensate for it.
While I seem to be able to function quite well now, the test illustrated some of my ongoing vulnerabilities. The intense concentration required to perform the tests left me somewhat exhausted; while I think I did well on the simpler aspects, the more complex tests of working memory were another matter. It is what is is.
One last bit of medical news. I received my file of hospital notes and checklists (yes, they use checklists in cancer care, so Atul Gawande will be pleased!), about 2 inches of paper, on my 2009 treatment. Much I do not need to keep – these are the medical equivalents of log books and notes – but it is somewhat reassuring to see the thoroughness of the methodology and documentation.
We watched The Weight of the Nation on HBO this week. A bit of a ponderous and heavy documentary and messaging (puns intended) but hard to dispute the overall message of an obesity epidemic (and this is not just an US issue. Some good tools on the site (link here) for things people can do on an individual level.
We also watched Les neiges de Kilimanjaro (The Snows of Kilimanjaro), a French film about a union leader who loses his job in a downsizing, along with other workers, is given money for a wedding anniversary trip to Kilimanjaro, but is robbed by a co-worker, and has to confront and question some of his past decisions, as well as his obligations to his co-worker even after he is charged. A bit slow, and a bit too much of a Hollywood ending for me.
I have been reading Disgrace, the book by South African writer J.M. Coetzee, 1999 Booker Prize winner. The main character, a disgraced professor, is thoroughly antipathique at first (a bit like in Bissoondath’s The Soul of All Great Designs) but one starts to have some sympathy for him at his hearing on harassment charges, as he, while fully admitting his guilt, refuses to play along. And then a different but parallel disgrace that happens to his daughter, which weighs down on him, and frames an end of life, as in living life, theme. Bleak, thoughtful, and very well written, and keeps one interest.
With the good weather, biking every day. No real improvement in my time but am certainly enjoying it.