What's behind the sky?

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''.  


  

   

End of the free ride?

Well, I guess it had to happen eventually; my free ride seems to be over. After an amazingly easy first six weeks, the chemo seems to be           
catching up with me. Feel like crap pretty much all the time. Nothing to do       
though except keep moving forward. I'm almost halfway through now,             
unless they decide to stop it after four cycles. Yesterday two nurses in       
the infusion ward were talking about a guy who stormed out after ten           
minutes, saying ``I can't do this any more''. Not sure what he's doing         
about his Picc. I can certainly imagine getting to that point.

 

On the bright side, it's still fun to see Sara's boundless enthusiasm          
for her new opera adventure. Now she's bought tickets for all three of         
the remaining operas of the season (Tosca, Semele, Ariadne auf Naxos)          
and has recruited several more opera neophytes from the urology clinic         
to go to Tosca with her. And on the even brighter side, Abby and               
Victoria are here! Not to mention of course the always entertaining            
little munchkins who so unfailingly brighten my day. The latest game           
I've invented is to tell Kaia or Finley ``I think your ear is loose;           
it's about to fall off!'' Then I make a big show of tightening it up           
again. Like all of my jokes, no matter how lame, this is received with         
great hilarity. The only problem is that of course they want me to do it       
again and again and again, with noses, fingers, toes...and with Kaia,          
you can't deviate from the script one iota; she wants you to it exactly   the way you did it the last time.                                              
                                                                               
And then there's mathematics; if only I could explain how awesome it's         
been lately! Even with my bad case of the blahs, I've been enjoying            
mathematics more than ever (it has the side benefit of taking my mind          
off this constantly upset stomach that is very annoying). For many years       
I've wanted to properly learn the theory of ``spin'' (it goes back to          
physicist Paul Dirac, but by now is thoroughly integrated into pure            
mathematics). Now I'm finally doing it; even yesterday in my                   
uncomfortable state in the infusion ward I managed to read a few               
sections of the beautifully written text ``Spin geometry'' by Lawson and       
Michelsohn. It's a great feeling when the pieces start to fall into            
place (a modest version of the ``aha'' experience). Can't wait to talk  about this in the seminar next quarter.                                        
                                                                               
Well, that's probably more than you wanted to hear about spin, so I will       
sign off for now. At least I have a break until Dec. 5!   

 

p.s. Sorry about the weird line breaks. Blame google!

 

 

   

  

Opera infusion!

Friday was another double-dose infusion, seven hours in the luxury suite this time (i.e. with a bed instead of a chair, and sliding door that closes off the room). The usual math, Italian, snoozing, occasional excursions with my IV pole down the hallway, "free" dinner etc. The most fun is seeing Sara's amazing enthusiasm for her new opera adventure. She brought in her "Opera 101" book with various pages marked in colored tape for my comments: my opinion on the author's suggested first operas, for instance. I'm the resident opera expert on the infusion floor! When her pager would go off she would answer it reluctantly, then return to our opera discussion.

This is not to say that it's all fun and games, as I don't feel so hot for several days. But it's still nothing compared to what I thought it would be. Even the hiccups weren't nearly as bad this weekend; don't know why. Last night I managed to stop a hiccup fit right before bedtime by faking them out. Didn't want to drink a bunch of water, as this has well-known collateral effects during the night. So I just filled my mouth with water and pretended to drink it, and it worked! My next step in mind-over-body is to see if just looking at a glass of water with a straw in it will frighten off the hiccups, but I can't say this has yet worked.

In any case, to steal a lovely phrase from Chris, I've had many infusions of joy of late: wonderful visits from Mom, Janet, now Abby and this Thursday, Victoria! Not to mention the Nutty Nut Show a.k.a. Kaia and Finley, who were in fine form last night at our house for dinner. When it's time to go and Jessie and Kevin are trying to get the kids out the door, Grandpa's secret weapon is to ask "who wants to help me carry down the garbage?" This results in great excitement, and much negotiation ensues over who gets the compost, the recycle, the regular garbage. For some reason they both are enamored of the small green compost bag, but it was too full and too risky so I took it. Kaia was happy with her recycle bin,
while Finley, once I talked him out of the compost, marched proudly down the steps repeating "I'm carrying a VERY LARGE sack!" And "look at all the stars!" says Kaia.

Taking out the garbage--who knew it could be so much fun?

Catscan report: Death to the lackeys of carcinogenic imperialism!

Got the results of yesterday's catscan today. Cancer in the bladder itself has shrunk considerably, so much so that it is not unreasonable to expect subsequent treatments (four more cycles, blah) to eliminate it completely. The carcinogenic imperialists and their lackeys are on the run; I warned them not to mess with a topologist! The possibly cancerous lymph nodes scattered about my abdomen with one exception haven't shrunk at all, but they haven't grown either. This is considered a very positive result by the oncologist, who, by the way, was much amused by my promise to credit him in my next research paper.

As to what happens at the end of the chemo, here there is a divergence of opinion. The very standard practice suggested by the oncologist is that one then goes ahead with a cystectomy (bladder removal) to ensure all the cancer has been removed from the bladder, and at the same time excise any suspect lymph nodes. This I definitely will not do. He envisions a bladder returned essentially to normal...so we'll cut it out? That's nuts. It's all way off in the future still, but under those circumstances I wouldn't even consider it. You definitely have to push back on things like this.

As to the catscan, there was the usual comedy of miscommunication so disturbingly common in hospitals. I started off in the radiology waiting room at UW Med, which is like Central Station at rush hour, packed with all manner of humanity waiting to be scanned for this or that. A male nurse approaches me with a large bottle--I don't know, about five gallons--of liquid. "Mr. Mitchell, you need to drink this (contrast solution) over the next hour before the scan. But don't go to the bathroom because the doctor wants you to have a full bladder during the scan." With great difficulty a I keep a straight face, and attempt to reason with the fellow: "Sir, that is not going to happen. I have an empty stomach, per your request. I am here because of bladder cancer, although apparently you have not been informed of the fact. And even under the best of conditions, my bladder has about a fifth the capacity of that bottle. Does it seem likely to you that I will be able to comply with your instructions?" But nothing will sway him; these are, he insists, the doctor's orders.

Fine. I take the bottle and have a seat, with no intention of following the instructions because it would be physically impossible. After half an hour a trip to the bathroom is already unavoidable. No problem; the second half of the bottle will be more than enough to fill the old bladder. I'm thinking I can manage it if the catscan begins at 11:30 as scheduled.

But of course it does not. Still in the waiting room at 11:50, I inform the nearest nurse that time is fast running out on the full bladder theory. If they don't get me in soon, more than time will be running out and it will be all over their catscan. Just five more minutes, I am assured, and ushered into waiting room no. 2 where the next nurse takes the liberty of opening up my PiccLine and putting stuff into it. "And now," she says cheerily, "I need to take a little blood to check your kidney function." What?! I just had extensive bloodwork on Friday, which showed among other things that my hematocrit levels are starting to drop. I ain't giving up any more red blood cells! Really? says the nurse. Well yes, because I'm currently undergoing chemo for bladder cancer. Oh, says she, and goes off to check. "You're right, you do have a complete lab report. No need for the blood draw". Imagine that. But I really, really do need to get this done soon or I'm not going to be able to hold it. "You can go to the bathroom", says the nurse, "that's not a problem". No I can't, because the doctor wants a full bladder for the scan. "Oh," says she.

In my experience if you have ten people working on you in a hospital, the odds are only two of them will ever talk to each other, and even then it's probably about the Seahawks. Finally, a scan room is about to open up. Yet another nurse escorts me further into the inner sanctum of Radiology. But not to a scan room. "Wait here," she instructs me, pointing to waiting room no. 3 which is open to the hall. Five minutes go by. Ten minutes go by. Nurses walk by at a brisk pace. Probably running for the bathroom, damn them. Fellow travelers come and go. A nurse seats another older gentlemen in the chair opposite me. "You can all have a party" she suggests. "I'm not dancing with these guys" he mutters. Five minutes later muttering man is summoned for his scan. Hey! No fair! I was here first! Beginning to grasp the magnitude of my emergency, a nurse offers the possibility of going to a catscan in the ER, "but it's a long walk". Or I can "wait five more minutes".
Yeah, right.

At last we are on the way to the scanner. "You'll be getting an injection of dye that will make you feel like you have to go the bathroom" says the latest nurse. A born comedian, apparently. "But you won't really go". Ma'm, I would like to point out that I am 63 and know my own bladder exceptionally well. It is a mathematical certainty; we have missed our window of opportunity. And to the catscan operator: I really don't want to make a mess of your expensive machine. Can you just go halfway, and hold the rest? Okay. I'll try. Then into the machine. They take a few pictures, then inject the dye. Now we have to wait ten minutes before the last picture, says the operator. No way. I try bargaining: How about eight minutes? She takes pity on me. Even eight minutes are an eternity. I begin humming out loud "Stride la vampa" from Il trovatore, waving my arms, anything to distract. Now the last picture is taken, she's rolling back the scanner bed, I'm throwing off the blanket---wait, wait, she says, I'm still lowering the bed---but I jump off, bolt across the hall to the bathroom and barely, just barely, make it.

Today at the doctor's office a resident showed me the catscan pictures on the computer. "This is the bladder," he points out. "You can see that it's completely full."

Nov. 2 Update

By popular demand I'm posting another update, even though in truth there's only more of the same to report. Well, I do still have my hair!

Last week I had further episodes of remarkable energy. For instance on Wednesday after getting up at 6, going in to teach my 9:30 class etc. I was the speaker in a small seminar 3:45-5:15 and gave one of the best, most energetic talks I've given in years. Lots of fun. Then I was up until after midnight working on math, so completely atypical for me. It's true that I have a couple of naps thrown in but it's still very surprising. Thursday I did a triple-hill walk in the park, working on math throughout as usual and it was exceptionally productive.

On Halloween I had my gemcitabine infusion, with the nurses dressed in elaborate costumes: wicked witch of the west, Glenda the witch, and my nurse Glen as a monk with sinister Da Vinci Code overtones.  The nurse practitioner Sara (not in costume) did ask the oncologist about my hyperenergy and said he has seen this before, although he doesn't buy my ondansetron theory. But what else would it be? It is very clearly drug-induced, and surely the cisplatin/gemcitabine itself doesn't have such an effect! Or maybe my shift in diet has had an effect, but it's not like I've changed that drastically.

Sara is great. She recently decided on her own to try opera, as a new experience in the arts, and is all excited about seeing her first opera, Tosca, in January. Has been reading the libretto, listening to recordings etc. and wants me to tell her "all about opera". I suggested that when Abby's here in a couple of weeks she should give a recital in the infusion ward. There are big elevators that an upright piano might fit in, to bring one up to the 8th floor!

Saturday was pretty typical, i.e. feeling lousy but still functional. The worst is this weird feeling in the stomach that I don't know how to describe. It's not quite nausea, not quite pain, just very uncomfortable. A "bloated" feeling is the best description I can think of. This morning (Sunday) I'm much better though, even rarin' to go.

This coming week I'll be at the Med Center three times: Tuesday for a catscan, Wednesday to discuss the results thereof with the oncologist (I will push my ondansetron theory; maybe we can write a joint paper on the subject), Friday for my "off-week" checkup at the urology clinic. They don't do another Petscan because the insurance won't cover it, although apparently it will be covered if the docs find the catscan insufficiently informative. After that I'm scheduled for two more three-week cycles, which I assume they will do regardless of the catscan results.  Anyway, I am so lucky that I can just walk to one of the best cancer centers in the world from work!