Saturday, September 13, 2014

A Light in the Brain

"You won't feel anything", they assure you the first time you head in to the radiation machine.  "It's just like a CAT scan".

That's almost true.  But, every time, for the first few cycles, I see a series of bright flashes at the periphery of my vision.  Though not everyone has this experience, it is fairly common among patients receiving radiation to the head.  The flashes are there just the same whether my eyes are open or shut.  They don't correspond to any actual light in the world outside.  Instead, they arise directly from stimulation of the brain (or the optic nerve) by the gamma-ray beam - tampering with the perceptual process and making me see things that aren't really there.

There's something a bit disquieting about this experience.  It disrupts our common way of thinking that the mental and the physical aspects of our existence are two quite separate realms, interpreted in different ways, with traffic between them permitted only at a few well-understood border posts.

Tuesday, September 9, 2014

The Addleton Tragedy

Sherlock Holmes
Arthur Conan Doyle wrote fifty-six short stories about his detective hero, Sherlock Holmes.  The narrator, Holmes' companion Dr Watson, regularly tells us that his writings are only a selection form Holmes' case-book, and the hints he drops about Holmes' extra-canonical exploits are endlessly fascinating.  Who could not wish to learn more about "the giant rat of Sumatra, a story for which the world is not yet prepared" (The Adventure of the Sussex Vampire)? Why couldn't the whole story about "the politician, the lighthouse, and the trained cormorant" be given to the public (The Veiled Lodger)?  What exactly did Holmes infer from "the depth which the parsley had sunk into the butter upon a hot day" (The Six Napoleons)?  And what were the "singular contents of an ancient British barrow" which gave rise to the Addleton Tragedy (The Adventure of the Golden Pince-Nez)?

Monday, September 1, 2014

Health update - week 14 or so

Climber at Donation Rocks
It must be good news that I can't remember what treatment week I am in now.  I've met a couple of people this week who've told me that they are reading this blog regularly, and wondered how I was doing because I haven't posted an update for a while.  It is such an encouragement to hear from people who care!   Speaking for myself, I would suggest, if you have a friend who is sick or grieving or troubled, and you feel that you "don't know what to say" to them - then reach out!  It says so much when you reach out,  saying (or doing) something rather than nothing, that you shouldn't worry too much about saying absolutely the right thing.

Anyhow, the past month has been marked by slow but steady improvement in my strength, stamina and enjoyment of life.  I've finished with all the numerous medications that I had to take - I seem to have enough leftovers to open a pharmacy! - and I don't have any pain worth mentioning.  I'm also sleeping much better - it seems (though I'm not sure) as though the removal of my sinus tumor may actually be helping me sleep more comfortably.  I've been rock-climbing a couple of times at Donation, and noticed my strength returning.  The line in the picture is called the "Shark's Tooth" - by its easiest route it is not too hard, but I was pleased last week to find that I have the strength to pull up over the "tooth" again. I'm also considerably lighter, which ought to help my climbing but its most obvious effect is to make me need a new harness because the old one has become rather loose!

And I am enjoying getting back to the classroom in the low-stress environment of a graduate seminar.  A couple of weeks ago, before classes began, I traveled back to Johns Hopkins for what I imagine will be the first of many follow-ups. Although this did not involve any detailed tests, the doctors were very pleased with my progress and made a lot of encouraging comments.  And the DEVICE has succeeded in improving my jaw opening by about 40 percent!  Next check-up is mid October and (unless something weird happens) I most likely won't post another health update until then.  Time to get back to the enviro-blogging!

Photo from the web site of the Climbers Coalition of Central Pennsylvania

Friday, August 22, 2014

Information Aversion

In II Chronicles 18, the kings of Israel and Judah, Ahab and Jehoshaphat, make an alliance to go to war together.  Before they march out, though, Jehoshaphat makes a request: "Inquire first for the word of the Lord."  Ahab "gathered the prophets together, four hundred of them" and they unanimously proclaim that victory is at hand. Jehoshaphat though is not fully convinced: "Is there not here another prophet of whom we may inquire?".  Grudgingly, Ahab admits "There is one, Micaiah ben Imlah...but I hate him, for he never prophesies good concerning me, but always evil."

Ahab is suffering from information aversion - he is strongly motivated not to know, indeed he is willing to pay a price to ignore, what Micaiah may be going to tell him.  In Azimuth today, John Baez has a great post on some modern research on this topic, and its implications for climate change.  It begins:

Why do ostriches stick their heads under the sand when they’re scared?

They don’t. So why do people say they do? A Roman named Pliny the Elder might be partially to blame. He wrote that ostriches “imagine, when they have thrust their head and neck into a bush, that the whole of their body is concealed.”

That would be silly—birds aren’t that dumb. But people will actually pay to avoid learning unpleasant facts. It seems irrational to avoid information that could be useful. But people do it...
Read the rest here

Photo: Ostrich, mouth open CC BY 3.0
Donarreiskoffer - Own work

Wednesday, July 30, 2014

Update - Week 9

Dinner cooking
"Normal service will be resumed as soon as possible".  That's an old phrase which seems rather apt as I slowly recover from the treatment effects and try to get back towards a slightly more ordinary life.  Here are a couple of matters that have been at the front of my mind over the last couple of weeks.

1. Food - For the final week of treatment and the first two post-treatment weeks, it was difficult to eat anything at all.  I would sit in the morning in front of a small bowl of Shredded Wheat, slowly maneuvering one biscuit after another past the sorest spots in my mouth; when, with a sense of great accomplishment, I finished the last one, I would find that an hour had passed.  Now the mouth pain has largely gone away and I am (sometimes) energetic enough to start cooking for the family again, as well as eating the results - see the photo of this evening's dinner. In place of the pain on eating, I find that my sense of taste is completely muddled up, with some foods tasting extraordinarily bland, and others - especially anything spicy or alcoholic - producing fireworks of flavor at the slightest drop.  (I incautiously ordered fish tacos in a restaurant the other day - I doubt they were really that spicy, but it was though I had never experienced chili peppers in my life!)

A couple of years ago, one of the retreats I made with GreenFaith was at a Buddhist community in Ulster County, NY.  An abiding memory from that time is of sharing meals with the community.  One aspect of Buddhist teaching is "mindfulness" or giving focused attention to what is happening in the present.  It was extraordinary to see the focus the community members gave to fully experiencing the food they were enjoying (wonderful food, by the way) and it reminded me how so much of our US food experience is of eating without enjoying, almost without noticing.  In a strange way I hope that these weeks, in which eating has been so laborious, will help me more fully remember to enjoy the gift of food even when eating becomes physically easier.

2. Strength - This last week has been one of surprising physical exhaustion - hours of sleep, hard to move, lack of energy.  This may have been caused by some kind of infection which I think I am getting over, I am not sure.  This kicked in more or less as the radiation and eating issues were receding, so that the pattern of "always something new" seems to be continuing.  For days in a row I was unable to do much in the way of writing or mathematical work, and though I have enjoyed reading a lot of books I am feeling like I should be doing more.  I think "should" is probably a dangerous word when recuperating in this way, but there are still some things that definitely need to be done!

One consequence of this exhaustion is that I have once again decided to postpone the start of the Math for Sustainability course which I have blogged about many times over the past year.  From being planned for this fall, we have now postponed to next semester, Spring 2015.  This also has been a story of many postponements, and this last one is the most frustrating of all.  But my level of exhaustion was such that I could not imagine teaching an undergraduate class, and it did not seem fair to gamble on recovering my strength before the seemster began.  Stay tuned for more...

Tuesday, July 15, 2014

Update - Week 7

The sinister DEVICE
It's been a couple of weeks since I posted an update on my health issues- two weeks during which I finished radiation treatment at Johns Hopkins, came home, and (in theory at least) started to recuperate.  If I say that I keep trying to post an update but then finding myself asleep, you will realize that these have also been two weeks when I have felt extremely tired... tired enough to have almost fallen asleep on my feet, now and again.

At my final meeting with Dr Quon, he seemed pleased with my progress but warned me that for the first two or three weeks after treatment, my body will continue to react as though treatment was still going on.  As well as the tiredness, that means continuing mouth sores, and continuing high doses of narcotic medications to manage the pain that they cause.  Just over a week after the end of treatment I do notice a slight improvement in the mouth issues, but that has been offset by radiation burns on the skin of my face and neck, something like a really, really bad sunburn.  Again, this was not unexpected, and can be managed with appropriate medication - but it was a surprise that the burns suddenly manifested themselves acutely after radiation treatment was over.  We had a difficult weekend taking care of these, but things have improved yesterday and today.

I had taken a picture of the radiation burns, but hesitated about using it in this post because it does look a bit gory.  Fortunately, a FedEx box arrived today with something less scary-looking that I can photograph instead.  The DEVICE (officially, the "TheraBite Jaw Motion Rehabilitation System") was prescribed by speech pathologist Heather Starmer because she is concerned that radiation and surgery has constricted my maximum jaw opening - if it continues this could make it hard for me to eat and talk, or for a dentist to look around inside my mouth.  Despite my following (more or less) a course of jaw exercises, my maximum opening has gone down again, so I am going to need to use this contraption regularly to expand my mouth.  Once this post is done I have to watch the instructional video to find out how it works...

In my last post I wrote, "I am rejoicing that the end is in sight".  That "end" has come and gone and, as so often in life, it has turned out to be more of a way station than the end of the line: after it, there are still medications to be taken, pain to be managed, exercises to be done.  Nevertheless, I will continue to rejoice.  I have so much to be thankful for and (cliche though it is) this illness and treatment has made me all the more aware of that.  "I give thanks to you, O Lord my God, with my whole heart." (Psalm 86:12a)

Tuesday, July 1, 2014

Update - Week 5

As well as being an update on my current situation this is a practice post from the iPad using the Blogsy app, so I am not really sure how the formatting will come out - we shall see!

Anyhow, as of today I am DONE WITH CHEMO which amkes me extremely happy. Even though I have mostly avoided the worst side effects of chemotherapy, my body has still taken a beating, especially these last two weeks. Tuesdays have been rough days. So "no more" of that is excellent news.

As far as radiation is concerned I have 6 of my 48 treatments left: two tomorrow, two on Thursday, and two next Monday. These have also been getting harder but I'll make it through.

The hardest thing to contend with has been the mouth sores which I have mentioned before. These have got to the point now that eating anything at all is slow, tedious, and painful. I am taking pretty heavy doses of opiates to deal with the pain, and I am sure that without them I would not be able to eat, or talk, at all.

So, things are getting harder, but I am rejoicing that the end is in sight!