Year 1, Week 2: Clinic Update


My week started with a clinic visit and another sign of progress: to being labelled an ‘oldie’ to use the term of the nurse. While some of the other patients don’t like this term, I am quite happy to be an ‘oldie’, given that it is better than the alternative. I did suggest to the nurse (who knows me way back from my time in the ward), that she try out the term veteran to see how some of the other ‘oldies’ react.

I had a bright young resident that I had not met before go over me thoroughly, after the obligatory congrats on the one-year mark. Key points.

  • Neuropathy: Not much that can be done to reverse the damage. Something I have to live with (either is damage to the peripheral nerves or the blood vessels that supply them). Not a big deal, just an inconvenience.
  • Prednisone phase-out: Down one further step, to alternating daily between 5 and 0 mg. No real effects noted to date.
  • Septra (anti-pneumonia): Will keep taking for a few months yet – ‘if it isn’t broken, don’t fix it’.
  • Pulmonary Function Test: Some nuance from the last discussion. Lung capacity slightly up, diffusing capacity (ability to absorb oxygen), just under the normal range. Not a big worry.
  • Liver health: Not only are my liver enzymes where they should be, but my excess level of ferritin, over double normal a few months ago, is close to normal. All of this without ‘bleeding’ me.
  • Lungs are clear
  • Pleased that I am on track with my vaccination schedule.

Amusingly, the resident asked if I was an engineer, given her perception of my organization and methodological approach to being on top of the file. I replied that I worked for the government, and she, being from Alberta, noted that she had forgotten Ottawa is a government town.

My regular hematologist popped in, looked me over quickly, pronounced me well, and gave me a quick neuropathy test (walking on one’s heels, standing at attention with eyes closed). I passed with flying colours, he laughed and said not real neuropathy. And then the best sign of progress: ‘we don’t need to see you for another couple of months’. So out the door I went.

He also provided me with the identity release forms to allow my donor to know my identity. Nothing too onerous, with the usual balance of potential rewards and risks, and the ability to be selective on how much information one wishes to release (ranging from name only to all contact information).

Of course, now that we have the form, we are reflecting on whether or not we wish to go ahead. From the theoretical possibility to action always gives one second thought. While some of the risks (e.g., loss of anonymity and publicity) are not risks to us given my blog and forthcoming book, there remains a certain feeling of awkwardness about establishing contact with a complete stranger, one who is part of my in a physical sense and who has saved my life. In the end, I expect we will go ahead, but no need to rush, so we will reflect further.

Finally bought a new Mac as our old one was becoming irritatingly slow on some of the more graphic-intensive tasks. The joy of speed, that wonderful first few months when everything just flies, and one appreciates it that much more.

This also helps with the revisions and edits on my book. The text is all edited, save for the conclusion, and some final formatting corrections and adjustments. I finally decided on the title after consultation with some friends and family: Living with Cancer: A Journey.

A good feeling to get this far. I now have to reformat this from the iBook format to Kindle and Kobo formats (the iBook format is visually more rich, allowing for better quality photos and graphics). I continue to have discussions with a number of organizations on promotion and marketing opportunities, and am largely on track for ‘launch’ mid-to-late September.

Movie-wise, more light entertainment these days with our daughter in her last few weeks before she goes off to university. We watched The Hunger Games, while not terribly deep, has some wonderful riffs and commentary on human nature: our vicarious interest in violence from Roman gladiators to NHL hockey goons, our entertainment obsessed culture, the cynicism of media producers (‘you call that a kiss’), sport as ‘opiate of the masses’. More conventionally, we also watched Iron Man, a fairly standard action flick.

Apart from all this, the usual routine of walks and biking, including some good walks and visits with friends, some that I had not seen for some time. All good.


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