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!


Thursday, June 19, 2014

Book review: "Reason in a Dark Time"

I've wanted to do a review of Dale Jamieson's Reason in a Dark Time for a while. (Besides, it will make a change from the personal posts.) Subtitled "Why the struggle against climate change failed, and what it means for our future", this is not a feel-good story about international efforts to stabilize the climate.  Instead, Jamieson tells the story of the period from the Rio Earth Summit (1992) to the Copenhagen conference (2009) as a tragedy: a narrative that, starting with high hopes, has now, thanks to the flaws and mixed motives of the participants, ended by "locking in" a level of global warming above the threshold that they had originally decided they must avoid.   As a philosopher, Jamieson wants to ask two questions: What made this tragedy inevitable?, and What resources do we have to move forward from here?

Tuesday, June 17, 2014

Halfway mark

Perhaps I need a few more different meds...

We're approaching the half way point for my treatment and I'm beginning to notice some side effects.   Not that I don't have plenty of medications to reduce the side effects.  And medications to counter the side effects of those medications.  (I don't think I have yet advanced to the third order of medication-indirection.)

The most aggravating of these is sores in the mouth and throat (caused by radiation and chemotherapy both) - officially known as mucositis. I was told to expect this and warned, when we started out, that "eating will no longer be a pleasure - it will be a duty."  We got through the first couple of weeks pretty lightly in this regard, but over the weekend the sores started showing up and now they are getting quite difficult.  At least four of the meds you see in my picture are directly aimed at managing mucositis and as a result I can still eat, and even with some enjoyment.  (All the doctors today told me I should be less restrained with the narcotics than I have been - I have a "dose as needed" prescription with a wide range.  So I basically doubled the dose today which left me woozy but comfortable.)

Chemo is notorious for making you nauseous but I haven't experienced any of that, probably thanks to the anti-nausea meds (another two or three in the picture).  Unfortunately anti-nausea meds (and also narcotics) are notorious for making you constipated.  Hence the four or so anti-constipation meds in the picture.  Last week that got quite bad before we got it under control.  This week I have some more energetic preparations available with which to take, uh, pre-emptive action.

Okay, that was probably TMI.  The main story though is that though I am experiencing some predictable problems, I am still blessed with a high energy level (planning to head back to the climbing wall tomorrow), a good appetite, and a manageable side effect profile.  And with great friends and support.  Liane is back in State College this week and my friend and colleague James Sellers is looking after me here.  Thanks, James!

Wednesday, June 11, 2014

News from the Chemofront

Radiation machine
We're about 30 percent through the chemo/radiation regime here and I wanted to post an update on how things are going.

The first thing to say of course is that as far as success or failure in actually treating the disease is concerned, no-one can say what's happening.  We're not attacking a substantial tumor here which one might see shrinking: we are looking to eliminate invisible microscopic bits which might have been left behind even by the marvelously skilled surgery that I received in April.  So, no news (and let's hope that is good news).

So what I'm more focused on right now is the side effects of radiation (sores in the mouth, difficulty swallowing, stiffness of muscles) and chemotherapy (nausea, taste changes, sun sensitivity) and how well I am managing them.  And in that respect the news is good so far.  I have some sores starting, but I am still enjoying my food and actually gaining a little weight (I am under instruction to load up now because it may be harder later) and the pain is managed well by Dr Quon's drug regime.  And I have had no chemo-related nausea yet.  Thanks, Zofran!   (Even though you make me constipated.  In fact, pretty much all the meds seem to have that effect...)

Apart from "eat plenty and healthy" the other instruction I received was to keep exercising and that I've managed to do so far.  There is a gym with cardio and weights on the Hopkins campus - intended for staff, but long term patients like me can get access.  I've been there regularly and the other day was able to make it out to an Earthtreks climbing wall as well. So that seems good news.

And I am beyond blessed by the cherishing care of my wife Liane.  When I get confused or frightened or angry, her wisdom and love are like a refreshing drink of cold water on a broiling summer's day.  When we made those "in sickness and in health" vows back in 1986, we meant them: but somehow I hadn't really thought through what it would mean to be the person who receives the cherishing, the sick one, the needy one.  We so like to think of ourselves as strong, don't we?  Well, sometimes we're not.

For the future: I've had an easy start, and I've met a lot of people who are in a much worse place than I.  I expect the next couple of weeks will be harder than these last ones have been, so keep me in your thoughts and prayers (if you pray).  I so much appreciate all the messages of support that you've sent via Facebook or email or whatever.  They touch my heart.  Thanks a bunch!

Sunday, June 1, 2014

Another Adventure

Liane and I are off to Baltimore tomorrow for me to begin radiation and chemotherapy at the Sidney Kimmel Cancer Center at Johns Hopkins.   Treatment will be every day for several weeks, and we are privileged to be able to stay at the Hackerman-Patz apartments which are right next door and are intended for those who have come from far away to receive treatment at the Center.

I can't help thinking of old Bilbo Baggins: "I think I'm quite ready for another adventure".

I'm not altogether sure that I'm ready for this adventure, but, ready or not, here it comes.  I'll post a few updates to this blog.  I'm hoping to keep the regular material going too (right now I'm thinking about an analysis of the "Solar Roadways" video which many friends have reposted...)  Meanwhile, I find myself chewing on the words of the Heidelberg Catechism:

Q. What is your only comfort in life and death?
A. That I am not my own, but belong — body and soul, in life and in death — to my faithful Savior, Jesus Christ.