Year 1, Week 12: Quarterly Clinic


Had my quarterly clinic visit (a key marker of progress is when clinic visits become less and less frequent). The short-form result: all good and boring, no major follow-up needed.

The detailed version:

  • Medication phase-out: I am now down to 1/2 tablets (2.5 mg) of Prednisone every second day for the next month or until I finish my current prescription. Once I stop Prednisone, I can stop Septra (anti-pneumonia) and go to a half-dose of Acyclovir (shingles prevention). Progress. I can also finish off my B12 bottle.
  • Muscle aches: She confirmed this was normal. Many long-term ‘survivors’ note that it takes between 3-5 years before one is back to normal; and, of course, at that time one is older anyway. Nothing to worry about, just the sensation that I have aged more quickly than I would have liked.
  • She reviewed the normal signs of GvHD (skin, digestive issues, eye dryness etc.) and I am fortunate to have none. While the risk continues to diminish with time, still something they watch closely.
  • I had noticed a sensitive spot on my right diaphragm. She noted not an issue unless it is something new – it is not.
  • She checked that I was on track with my vaccinations (I am, and mentioned getting flu shot this week).
  • No plans or needs for scans, but a pulmonary function test will be scheduled in January even if my activity level suggests not needed.
  • Overall, happy with my physical and mental activity levels and ‘am doing all the right things.’

No substantive comment on my book but recognition that is subject of a fair amount of ‘excitement’ among the clinic staff. I also briefly saw the main clinic nurse, who has always been wonderful and patient with us, who gave me a hug for making it so far!

My book sales are fairly flat but starting to get a few media nibbles, so will see where these go.

I have almost finished reading The Spirituality of Imperfection. The second part deals with how Alcoholics Anonymous uses a number of the long-standing elements of spirituality to help people change their behaviour through recognition of their own imperfection. Only one quote this week on the importance of community or the group (while I am enjoying the book, particularly the small vignettes, it is somewhat repetitive):
But if we learn to ‘see’ – first – ourselves as limited, then everything shifts, the whole world turns upside down…. In such a vision and in such a place, we can stop trying to conceal our imperfection and therefore our very essence. We can stop hiding. For what is there to hide or hide from when it is our very weaknesses that give us strength? In such a setting, others, listening, identify and in the process of identifying, come to discover their own identities.
My films this week included Cloud Atlas and Midnight’s Children. Both are ambitious films, reflecting the ambitious and scope of the books they are based upon.

I was really impressed by how well Cloud Atlas worked, how it brought the diverse stories and characters – across five centuries – together in a coherent and compelling way. Kept my attention and interest throughout a beautifully filmed three hours. Curious to read the book to see the differences and contrasts between the two media.

As you may know from earlier posts, I am a fan of Salman Rushdie, and thus wanted to see how he and Deepa Mehta were able to adapt Midnight’s Children into a film.

Disappointing, a far too literal and linear recounting, with little of the magic, the explosiveness, and imagery of the book, with only the first few scenes capturing some of this. Ironic, the verbal ‘pyrotechnics,’ which I always love in his writing, did not translate into similar ‘wow’ moments on screen. Some film adaptations work well (English Patient, Atonement), this one didn’t, again surprisingly as I would have thought Mehta and Rushdie, given how powerful they both are as storytellers and imagery, would have been able to pull this off.

A new month, and time to review my blog stats. October was my strongest month yet for views. Again, apart from the weekly update and the reflection and tip pieces, the articles that drew the most attention were:
  1. Meredith Israel Thomas (here and here)
  2. Leading Bone Marrow Transplant Expert Recommends Significant Change to Current Practice
  3. A doctor’s letter to a patient with newly diagnosed cancer (a perennial favourite for good reason)
  4. Poking Fun at My Patients
  5. Helping cancer survivors fight neuropathy

I have had a good week catching up with friends, capped off with a wonderful weekend with our kids in Toronto. So wonderful to see their ongoing development as young adults. And the timing is close enough to our son’s birthday that we could celebrate his turning 21 together, even though that is less of a milestone than it was when I was growing up.

I have, of course, also been watching Hurricane Sandy and its aftermath, a reminder of the force of nature, and how disasters bring people together and remind us of our shared vulnerability.

Next week back to Geneva to continue helping my mother-in-law with the next stages in her treatment.


5 thoughts on “Year 1, Week 12: Quarterly Clinic

  1. When I had my post-SCT checkups I always knew the PET/CT scan was clear and the blood work good when, after waiting for some time in the examining room, the physician’s assistant came through the door instead of the doctor. The doctor was very busy and typically saved his time to talk to patients who had some serious issues. Like you, I often had to separate “symptoms” related to the SCT and aftermath from the symptoms of just being a 56 year old man, e.g., fever vs. knee pain when skiing.

    I have been thinking a lot recently about my chemo, which I started five years ago this weekend. Eight rounds of in-patient Hyper-CVAD and then BEAM before the SCT. I will never forget that my first infusion, which began with a large IV dose of dyphenhydramine (a/k/a Benadryl). I had a very strong allergic reaction with severe rigors, which resembled an out-of-control convulsion. I somehow found the strength and focus to retain consciousness, but just barely and I vividly recall being very close to the edge. I think that was actually a good start since no matter what they threw at me it was never as bad as that!

    I wish you all the best!

    • Bruce,

      Thanks for sharing. My doctors also like to give the good news so I don’t have that visual clue that you do. Part of the ‘new normal’ is knowing what is normal and what to worry about and only natural that we tend to err on the cautious side.

      I supported most of the chemo reasonably well. Only the first time I had Rituxan did I get the shakes and by the second time, it was fine.

      Best wishes

  2. Andrew, you will not be disappointed by reading Cloud Atlas. It was one of my favourite books of the last few years and led me to read almost everything that David Mitchell has ever written. Cloud Atlas was the best, by far.

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