March 5, 2017

This will be my last posting.  The point of the blog was to keep people who had made inquiries informed.  At this point there won't be much to say on that front, or at least not for quite a while.  To continue posting would be a bit too self indulgent for my taste.

I have had my one month follow-up with both my medical and my radiotherapy oncologists.  Clinical exams show nothing detectable.  Before treatment started the guesstimate of my chance of a cure was two out of three.  Based on my response to treatment they are now guessing 80%.  It's now mostly a matter of periodically getting a PET scan to see if anything has recurred.  That will be every three months for a while then less often.  Beyond that, I'll be working at and monitoring recovery from side effects.

When I decided to retire early a number of people asked me if I wasn't concerned about becoming bored.   I had the following standard answer.  Supposedly the common sailors aboard the ships of the early European explorers were worried about sailing off the edge of the world.  I know with certainty that sooner or later I will "sail off the edge of the world", as will we all.  The question is what sorts of interesting sights, people, experiences, etc will I encounter on the way to the world's edge.  So far things have been very interesting and, for the most part, not what I would have predicted.

The experience of cancer falls into the category of interesting things on the way to the world's edge.  I only hope that I will manage to acquire all the insight it might offer.  I leave you with quotes from two people wiser than I

"We shall not cease from exploration

And the end of all our exploring 
Will be to arrive where we started 

And know the place for the first time.

A condition of complete simplicity

(Costing not less than everything)"

TS Eliot

"When I let go of what I am,  I become what I might be."

Anonymous Alzheimer's Patient

February 26, 2017

On the medical side of things there is some improvement and some stasis.  My dysgeusia seems to be diminishing.  That is the condition of having an unpleasant taste in your mouth for sustained periods of time, sometimes all day.  The taste just arises from nowhere in particular.  In my case it is as though I have the after taste of having just eaten a spoon of salt.  My other taste problem, the inability to taste any food or drink, remains although there may be some slight glimmers of improvement  At this point it is a little early to see significant change.  The whole subject of how we experience taste is more complicated than I ever would have thought.  A matter for me to put on my already too long reading list.

My energy is slowly returning.  This coming week I'll  start testing that with some exercising.  The loss of energy as radiotherapy progresses is very surreptitious and its' return seems to be the same
Cetuximab with which I was treated has had the side effect of causing my eyebrows to lengthen and become bushier with some curling and twisting.  My "normal" eyebrows were already noticeably bushy.  I now appear to have a small unkempt animal living above each eye.

I believe I said in an earlier posting that having cancer has not changed the course of my life but has rather confirmed for me the course I was already on.   The passage of time is affirming that.  We know, or should know, that many of the things of life that  we get caught up in are not that important.  However, we keep on getting caught up in them anyhow.   My mindfulness/Buddhist practice has helped to sort these things out.  Arriving in one's seventies and receiving a potentially life threatening diagnosis helps one to strip away even more of the extraneous and even more quickly.  Susan Cheever commenting on the effect a meeting with e.e. cummings had on her said, "I saw that being right was a petty goal - being free is the thing to aim for."  

February 19, 2017

The second of my post-therapy weeks is over.  For the most part it was, as promised, fairly rough.  However by today things are feeling much better.  All food and drink remains tasteless or provokes strange unpleasant tastes.  It's too early to expect any improvement in that and it may take up to a year to say how much taste returns.  I manage to mostly focus on what is coming back and not on what is still lost.

One day this last week was maybe the roughest day I've had and I even felt a little depressed.  Toward late afternoon of that day a realization dawned.  A piece of music I heard, a laugh I shared, the sight of late daylight falling on the trees over by the lake had all been moments of happiness regardless of the kind of day I was having.  In the commonplace book I started last year are the following entries.

"Our notions about happiness entrap us. We forget that they are just ideas. Our idea of happiness can prevent us from actually being happy. We fail to see the opportunity for joy that is right in front of us when we are caught in a belief that happiness should take a particular form."  Thich Nhat Hanh

"Some people feel the rain.  Others just get wet."  Roger Miller (Frequently mistakenly attributed to Bob Marley)

I will probably continue my weekly updates for another couple of weeks.  After that I may discontinue posting.  If and when I quit I will say so in my last posting. 

February 12, 2017

How easy it is to delude oneself.  I was told the debilitating effects of therapy would accumulate and the two weeks after therapy ends would be just as bad as the last week of therapy.   In spite of this I found myself feeling I would be bouncing back this first week after therapy.  My intent to attend the Friday gathering of Snowflower Sangha did not come to pass nor did other anticipated outings. In retrospect I was setting myself up for unnecessary suffering.  Implicitly I was thinking in terms of how I wanted things to be rather than being with whatever was the case.

In spite of the self delusion described above there are definite little recovery signs scattered about.  When we lived out in the woods I saw spring evolving from winter in sporadic ways.  Spring never arrived at once with some heraldic event.  A tiny wildflower showed itself in a sunny spot a few yards from the remnants of a snow drift.  The early arriving red winged blackbirds sometime found themselves singing as late snow blew off the marsh.  I'll have to keep this in mind as I await my "Spring"  and not expect some heraldic event.

With respect to both  recovering from treatment and also how this period relates to the rest of my life I can't help but think in terms of the Tibetan Buddhist concept of the bardo.   Bardo is an in between or transitional state.  It came to Tibetan Buddhism from the earlier Tibetan Bon religion.  In that context bardo is where consciousness reside between lives.  I think of it in metaphorical terms.  Is this illness experience telling me I am tied to an obsolete idea of myself that I need to shake to move on to a new version?

February 7, 2017

As of Friday, February 3 all the planned treatment is over.  Eight infusions of cetuximab and thirty three radiotherapy treatments are completed.  The cumulative effects of seven weeks of treatment, especially the radiotherapy,  have taken their toll.  There's no discomfort by way of pain.  The chief but not only effect is lack of energy.

I've made a number of attempts over the last few days to write a post to this blog.  Not much luck. Things as simple as writing a coherent narrative take energy you don't quite have.  It's predicted I'll be in this state for another two weeks if I follow the typical pattern.  This coming weekend I'll make another attempt at posting.  In the meanwhile - I just take a step at a time and hold myself and others in my metta meditation..

January 29, 2017

I have neglected to mention that the comment part of my blog does not work.  If you try to comment and can't it is not because you have done anything wrong.

There is one imunotherapy infusion and five days of radiotherapy left.  Treatment ends February 3.  After that it is a matter of waiting and seeing.  Starting mid-February side effects should first begin to decline.  Some side effects will be permanent.  Some will disappear completely.  Others will decline partially but not completely.  These latter vary greatly from one person to another in the degree to which they disappear.  It typically takes a year to know how it will turn out for any given individual.  Beginning in June I will get a quarterly PET scan to see if anything has returned.  One of the oncologists remarked that between my response to treatment and to side effects I was one of their "prize patients".  I commented that the prize hog at the county fair gets a blue ribbon but she said they hadn't developed any such formal award for prize patients.  

I once worked with someone who was a mountain climber.  He pioneered a new route up Mt. Everest and was on the first team to ever climb Great Trango Tower.  He commented that doing things like that was not so much a matter of summoning great resolve as it was a matter of taking the next step, and the next step,

The cards, emails, etc I have received from friends, neighbors and fellow sangha members have been encouraging and supportive.  After going in for treatment a number of weeks you begin recognizing fellow pilgrims in the waiting rooms and corridors of cancer land.  With little nods and greetings you acknowledge each other.  In an era when there is rather too much of building walls it is soul soothing to experience people reaching out.  I'm reminded of an oft quoted line by Ram Dass "We're all just walking each other home."

January 22, 2017

On the medical front.  Six of eight imunotherapy infusions are now done as are twenty three of thirty three radiotherapy sessions.  Side effects of immunotherapy, which are already manageable, actually seem to be declining somewhat.  Radiotherapy side effects are predicted to continue increasing for another week and then, for the last week plus two post therapy weeks, expected to plateau before beginning a slow decline.  There have been two pleasant surprises.  I had been using a numbing mouthwash before eating because of tongue soreness from the radiotherapy.  Although eating only soft, smooth foods I still needed to numb my tongue.  For whatever reason the numbing is no longer necessary.  Secondly, the throat pain that occurs with swallowing is still manageable with over the counter meds.  I have not needed to use opioids.

The experience of cancer I continue to find interesting.  It is rather like going on a pilgrimage in a foreign land.  You encounter the health personnel who are your hosts there.  You also encounter fellow pilgrims some of who will eventually return to their home countries, some of whom won't.  Having read people's account of their journey in cancer land and actually experiencing it is an interesting contrast.  For example, I always associated loss of energy with feeling worn out.  With the cumulative effects of radiotherapy there is no feeling of being physically worn out - just an absence of energy.  The distinction between appetite and hunger also becomes clearer.  You feel hunger but have no appetite to eat because all food is tasteless and eating is just a task to be accomplished. Drinking is likewise.

All in all the physical discomforts arising from treatment have been easier to deal with than the psychological.  Dealing with the psychological is best thought of as like being on a long march or climbing a mountain.  You place one foot in front of the other. If you focus on the end that's down the road you might just want to quit.

The above might sound rather more self pitying and negative than intended.  I consider myself  in many ways lucky and remain in relatively good spirits.  I'm merely trying to describe the subjective experience.