What's behind the sky?
At age 4, Kaia put this question to her mother. She meant it literally
of course, but to me it is a beautiful, poetic summation of all the
Big Questions: What is life? Where did we come from? What happens when
we die? And just what is behind the sky?
In this post, envisioned as the first in a series, I want to take up the
topic of life, death and dying, in particular as it relates to cancer.
I don't see it as a negative topic; I see it as framed perfectly by my wonderful
granddaughter's question. On the other hand, it means that I will be
talking openly about the possibility of dying from this cancer myself,
and I worry that this will be viewed as ``letting down the side'', as
some kind of breach in the wall of optimism I've erected up until
now. For me, there is no contradiction between the optimism and a frank
acknowledgement that yes, the cancer could kill me. And in fact I need
to think about this because I will likely have a difficult decision
coming up in a couple of months or so. In any case, if you are
uncomfortable thinking about such things, it would be best to avoid this
particular series of posts.
One other caveat: It is well-known to those who know me well that I have
a low opinion of dogmatic religion. Very, very low, approaching zero in
the limit as time goes to infinity. Here the term `dogmatic'' refers to
the practice, common to most of the world's major religions, of making
up random, irrational nonsense which is then advertised as Absolute
Truth. In a discussion of death and dying religion will inevitably come
up, sooner or later, and I won't be shy about expressing my opinion.
Anyone who might be offended by my views on the subject is therefore
cordially invited not to read the posts entitled ``What's behind the
sky?''.
It will take some time to even reach the sky, let alone get behind
it. I'll begin with some philosophical---and to my mind, very
practical---remarks on living with cancer, and with the prospect of
dying from it.
Part I. The Hollywood cancer script and the first stage of grief.
It isn't really fair to blame Hollywood. Novels as well as non-Hollywood
films often feature an exchange something like the following, just after
a patient has been informed he or she has terminal cancer:
``How long do I have, doc?''
``Six months. Maybe a year.''
This I have never understood. The question is absurd because no one on
earth can know the answer. Certainly not the doctor, who would be
well-advised to rethink his or her reply. And for the patient to accept
the verdict at face-value is even more absurd.
My own experience to date is limited to the question I've mentioned
elsewhere concerning what would happen if I opted for no therapy at
all. But even then it makes no sense to ask ``if I refuse all therapy,
how long would I have?''. I put it to the doctor like this (if memory
serves, this was the exchange verbatim):
``Suppose I had no therapy at all. What's your best estimate of what
would happen?''
``You could die within three to six months.''
Well, those are certainly numbers that get one's attention. I admit they
surprised me, especially the lower figure, since I was then and am now
still experiencing no symptoms, no pain from the cancer. But my
scientific side was almost tempted to call his bluff: ``Okay pal, you're
on. I'll bet you a million dollars I can make it longer than six
months.'' Now I'm joking, of course, but I am curious about it. Even
granting that cell division is a textbook example of exponential growth,
from ``feeling great'' to ``dead as a doornail'' in three months would be an
impressive demonstration indeed.
It isn't a hypothetical issue, which brings me to the ``difficult
decision'' alluded to above. I am going to be under considerable pressure
from the oncology team to undergo a cystectomy. Their strategy is that
the chemo reduces the cancer to a confined state within the bladder
itself. Then one removes the bladder, along with any cancerous lymph nodes
nearby. The risk of foregoing this step is that the cancer can return,
and return aggressively. But it can return anyway, and there may well be
suspect lymph nodes that are too scattered through the abdomen to remove
them. For these and other reasons, it doesn't sit right with me to give
up the old bladder without a fight. I would rather pursue the chemo as
far as it will go, then turn to alternative approaches.
Up to now I have had only brief discussions about this with the
oncologist and the nurse practitioner. Judging from body language,
expressions and one or two comments, I'm certain that they view me as
being in ``Denial'', that is to say in the first of the Five Stages of
Grief (originally applied by Kubler-Ross to death of a loved one, but
now commonly applied to learning one has cancer). This too is part of
the Hollywood Script. But let me be clear: At no point in the process
have I been ``in denial''. I have been and remain optimistic, but for
me, it is equally important to avoid the fundamentally arrogant error of
pretending that cancer only kills other people. In the journals of Lewis
and Clark, one of them (I forget which) makes a statement that has stuck
in my mind ever since: ``It is a sin to anticipate evil.'' A great
attitude, but it doesn't mean that they set off into the wilderness
unprepared. Trust in God, but be prepared for the Devil.
If I go against the doctor's recommendation, it will be with eyes open,
knowing that if my choice fails there can be no regrets, no ``damn, I
wish I'd had my bladder cut out''. Of course the cancer can kill me, no
matter what path I choose. There is no denial. But in the meantime, I'm not
going to anticipate evil.
I'll talk about the ``second stage'', anger, in a subsequent post. First
I want to talk about another emotion associated with cancer: fear. Fear
of dying, fear of chemotherapy, fear of the unknown.
Far-fetched though it may sound, my days as a rockclimber have been a
great help to me in this department. To explain this, I need to first
describe the two major forms of rockclimbing---free climbing and aid
climbing---as well as a third, less popular form known as free-soloing.
Both free and aid climbing use ropes and other equipment. The difference
is that in free climbing the equipment is there only as a backup to
catch you if you fall, whereas in aid climbing it is also used to aid
your upward progress. Free-soloing means climbing with no rope at all,
in which case the consequences of a mistake are unequivocal: you fall,
you die.
In all forms of climbing, fear management is important. In free-soloing
it is essential. If you're going to be scared on a free-solo, don't do
it at all. I've done a fair bit of free-soloing in my day, including for
instance a route called ``The flame'' near Leavenworth. I was familiar
with the route already, and only one move on it concerned me, a little.
It wasn't a hard move but involved stepping across a gap with a small
assist from gravity, almost falling forward in one big step. I might
have been over-dramatizing the situation, but it seemed to me at the
time that the move was irreversible, and therefore once across I would be
committed to finishing the route (it ended at the top of the cliff; then
one can just walk down around the side). At that decision point there is
some anxiety, if not actual fear. But once across, there is nothing to
fear at all. You are committed. You can only go up. Take it one move at
a time, and enjoy. (It was awesome, by the way, one of the most
exhilarating experiences of my life.)
I did very little aid climbing, as it is too slow and I don't like being
so dependent on the equipment. And indeed sometimes, you are totally
dependent on it. I still vividly recall a climb in Zion National Park,
on a fortress-like rock peak called the Watchtower. I was climbing
second on an aid pitch. In aid climbing it is common for the second to
not climb the rock at all, and to instead speed things up by climbing a
second rope, anchored above by the leader, using mechanical
ascending-devices called jumars. What was unique about this particular
pitch, for me, was that it was severely overhanging. This means that
once you release your own anchors and step onto the jumars, you will
swing out into space, away from the cliff. At that point you are totally
dependent on the rope, obviously. You fervently hope that it has been
well-anchored by the leader (hmm...I haven't said anything to offend Al
lately, have I?). Now, because of the overhang the leader and
I can't see each other, and neither of us can see the full length of the
rope. As I began my jumaring I couldn't help thinking of the
possibility---remote, but possible---that unbeknownst to us, somewhere
above me the rope had passed over a sharp edge, and my ascending motion
was gradually sawing it in two. There was no fear, however. I was
committed, the rope was hanging well away from the rock and there was no
way to turn back. In the unlikely event of the worst-case scenario, you
are dead for sure, but why worry about it? You can only go up. Just
relax, take one step at a time, and enjoy the beautiful view of Zion in
spring.
My point is clear enough, and it is the same with cancer. There can be
considerable anxiety at the branch points of the decision tree, but once
the decision is made there is no point in worrying, no point in being
scared. At the moment I am committed to chemotherapy, probably for many
more weeks. Why worry about the outcome? At this moment, I'm fine. Life
is good. There is nowhere to go but forward.
In one variant of the Hollywood Cancer Script, the person with ``terminal''
cancer rushes about trying to do all the things they always wanted to do
in life but never did, to fulfill their ``bucket list''. Nothing wrong
with that, but I would take a rather different view, namely, to just keep
doing the things I normally do: spending time with friends and family,
doing mathematics and teaching it, doing Italian, going on hikes,
etc. etc. This would be true even if I were told my cancer was
``terminal'', because even if that were so, what has really changed? It
is written from the day we are born that we are going to die, but do we
let this stop us from going about our daily life? The point is made by
Robert Louis Stevenson in his fable ``The sinking ship''. I first came
across this short tale in ``Zen in English literature and oriental classics'' by
R.H. Blyth, to which I was introduced at age 20 by friend and one-time
climbing part Roger Schlatter. You can easily find the complete story
online; here I will just give a couple of excerpts.
``Sir,'' said the first lieutenant, bursting into the Captain's cabin,
``the ship is going down.''
``Very well, Mr. Spoker,'' said the Captain, ``but that is no reason for
going about half-shaved. Exercise your mind a moment, Mr. Spoker, and
you will see that to the philosophic eye there is nothing new in our
position: the ship (if she is to go down at all) may be said to have
been going down since she was launched.''
In the powder magazine they found an old salt smoking his pipe.
``Good God,'' cried the Captain, ``what are you about?''
``Well, sir'', said the old salt, apologetically, ``they told me as she
were going down.''
``And suppose she were?'' said the Captain. ``To the philosophic eye
there would be nothing new in our position. Life, my old shipmate, life,
at any moment and in any view, is as dangerous as a sinking ship; and
yet it is man's handsome fashion to carry umbrellas, to wear
india-rubber over-shoes, to begin vast works and to conduct himself in
every way as if he might hope to be eternal. And for my own part I
should despise the man who, even on board a sinking ship, should omit to
take a pill or to wind up his watch.''
I don't plan to go down any time soon, with or without a ship. But
suppose I did? To the philosophic eye, there would be nothing new in my
position. I have no watch to wind, but I'll keep recharging my
cellphone. There is nowhere to go but up, free-solo if I have to.
To be continued: ``Anger, self-pity and other delusions''.
Steve, this is pretty heavy stuff, but I think it's great to get it all out in the open and start a dialogue. I haven't been seeing comments published on your blogs though, are folks emailing privately?
ReplyDeleteI don't think anyone besides Wendy and you has read it so far. In any case,
ReplyDeleteI give fair warning that no holds are barred. I have a lot I want to say but I certainly don't expect everyone to read it!
I've read it! Just haven't commented (yet.)
ReplyDelete