The results of the CT scan are as expected: Some further progress in shrinking the bladder tumor, some reduction in size of the affected lymph nodes. The great news for me though is that I was totally mistaken in thinking that I would be "under pressure" to have surgery. On the contrary, the oncologist not only is not pressuring me in the least, he now seems to be of he same mind and thinks surgery would not be a good idea. For some time now I had already decided I would decline surgery no matter what, but it's great to have the support of the oncologist himself. The plan is to have two more 3 week cycles beginning on Jan. 9 as proposed earlier, more scans and then most likely stop the chemo and go to check ups every 3 months or so. Also there is a new immunotherapy drug that has already been FDA approved for one type of cancer, and he expects it to be approved for bladder cancer with in the next 6 months or so. It may well be worth a try.
The doctor does emphasize that chemo is not a "cure", and that my cancer is metastatic (which we knew). It is very difficult to get a straight answer on typical survival time/rates for someone in my position, but I think the truth is simply that no one really knows--which has been my position all along. We don't know, so I'm going to just assume that I'll beat whatever odds by a wide margin. After all, I've always been an odd duck, so why shouldn't I be an anomaly in the cancer world as well? In any case, today's meeting has left me feeling more confident than ever. And I'm sooooooooooooooooooooooooooooo glad to be taking a break from the "nectar of the gods"!
I found out today that Jina's training was in ballet, but her professional dance career was modern dance in Japan for a few years. I was surprised to find her unaware of the fact that receptionist Priscilla spent several years in Japan as well, as some kind of exchange student, and still corresponds regularly (every week, I think she said) with her host family. So I'm helping the Urology Clinic folks to get to know each other. Now if only I could get Radiology and Urology to communicate...
Wednesday, December 17, 2014
Monday, December 15, 2014
What's behind the sky? Part II.
According to the script and the stages of grief, I think I'm supposed to
be wallowing in self-pity and/or angry. But it would be absurd to feel sorry
for myself even for a second, even if I thought the cancer would kill me
in a few months. I'm 63 years old, and I have had a wonderful, amazing,
incredibly fortunate life. I inherited some pretty darn good genes from
my parents. I have a wonderful, loving mother. Although my relationship
with my father was rocky, it was much smoother for me than it way for my
three siblings, and it is largely to him that I owe my life-long
interests in mathematics, languages, and athletic endeavours. I have
those three amazing siblings. I grew up in complete economic security,
with virtually unlimited educational opportunities, free to follow my
own dreams. And follow them I did, from the joy of climbing to the joy
of mathematics. I got a job I love at my absolute top choice university,
here in Seattle. I have the most wonderful amazing wife who I love. I have two
beautiful daughters who never cease to inspire and amaze me. I have two
grandchildren who have been determined by an independent consulting firm
to be the cutest grandchildren on the planet. At a low point of my
youth, I had the incredible good fortune to meet Jay. It was through him
that I met Wendy and almost all of the wonderful northwest friends that
I've known for 40+ years. Hell, even in cancer I've been lucky: I am
only a pleasant walk across campus from one of the top medical centers
for cancer treatment in the world. Feel sorry for myself? Neanche per
sogno! (A delightful Italian expression meaning ``no way!'', or
literally ``not even in a dream''.)
And who would I be angry with? God? One of the oldest recorded writings
on this theme is the Book of Job, which includes this memorable exchange
between Job---who was in much worse shape than I am now---and his wife:
Job's wife: ``How long will you go on clinging to your innocence? Curse
God, and die.''
Job: ``Foolish woman, have you lost your mind? We have accepted good
fortune from God; surely we can accept bad fortune too.''
Shortly thereafter Job completely loses his cool and begins ranting
bitterly against the injustice of it all. One can't blame him really,
under the circumstances, but his initial response was much more to the
point. Here I note that the words ``from God'' can be removed without
changing the meaning at all; it is just the religious person's way of
saying ``we have accepted good fortune; surely we can accept bad fortune
too''. In my case, to curse fate or fortune or whatever would be
ridiculous, even comical. Curse you, God! You have given me an easy,
comfortable wonderful life for 63 years, with no pain or hardship worth
mentioning whatsoever; how dare you betray me now!
Job's key question is ``why me?''. I
could ask this too, but the only reasonable answer is ``why the hell
not?''. Millions upon millions have had cancer and died from it,
including many younger than I. One of my early mathematical mentors died
of stomach cancer at 49. The wives of two of my colleagues succumbed to
breast cancer, in their late fifties I think. We all know many examples.
So there's nothing special about it. In fact one can and should take
this a step further: What's so special about cancer? I suppose it is the
fact that it is a long, drawn-out battle---which some win, some
lose---and a very painful one at the end, if it comes to that. In
contrast, a colleague in the math department recently drowned while
kayaking the upper reaches of the Yangtze (or was presumed drowned; his
body was never found). That, surely would be a better way to go. But he
was only around 40. My cousin David died in his sleep at age 16, of some
strange disease that was never properly diagnosed. I can still picture
the last time I saw him, a few years before that. I was with my family
at the airport in New York, waiting for our flight to Belgium in the
summer of 1964. A few cousins came to see us off, including David
limping along on his club foot---with a big smile, as always. As usual
we broke out the chess set and played a game in the waiting room. He
called the knights ``horseys''. ``You can't take my horsey!'' he would
exclaim.
It is much too late to be angry. To be angry now only raises the
question: why weren't you angry before, when David and so many others
died long ``before their time'', as we like to put it. I have accepted
good fortune. Surely, I can accept bad fortune too.
Since I have quoted from the Old Testament, and may well do so again,
before going further I digress to clarify my position on that venerable
text. As some readers of this blog know only too well, I once spent three
years studying the Old Testament. I came to three main conclusions.
First, that it is a work of great historical interest, providing a
window into a corner of the ancient world in and before the first
millenium BCE---a small corner, but one that for better or for worse
intersected at various times all the major empires of a much broader
region: Egyptian, Assyrian, Babylonian, Hittite, Persian, Macedonian,
Roman. It is of course filled with innumerable myths, legends, and
transparently tall tales, but even these provide interesting insights
into the times, and into the minds of the legion of diverse authors who
wrote the various ``books''.
Second, if viewed as a work of literature, some of it is quite good,
although one does have to watch out for editing by late redactors who
felt that the original did not conform sufficiently to the theological
dogma of their own day. The remarkable Book of Job (often the favorite
of tree-hugging cappuccino-sipping pointy-headed pinko intellectuals
such as myself) was among the worst victims of this corruption by pious
meddlers. I personally recommend the beautiful translation by Stephen
Mitchell (no relation). It too inevitably takes liberties with the
``original text'' (to the extent that such a thing can even be
determined), but at least it captures the fury of Job's shocking charges
against God, without the white-washing and censorship added by the late
meddlers. When they were not busy altering the text itself, the meddlers
were fond of making up the most absurd interpretations of it. In the
erotic love poem ``The Song of Solomon'', the King James translators
added chapter headings in which lines such as ``your two breasts are
like two fawns that feed among the lilies...oh queenly maiden, your
rounded thighs are like jewels...'' are introduced by ``Christ setteth
forth the graces of the church''. The Book of Ecclesiastes has been
attributed to King Solomon, for example by the Catholic church which
appealed to its supposed Solomonic authority to add weight to its
refutation of Copernicus' theory: The sun also riseth, and the sun
goeth down, and hasteth to the place where he ariseth. But as scholar
R.B.Y. Scott of the Anchor Bible Series points out: ``There is of
course no possibility that the Solomon of history composed this book; to
claim this is like claiming that a book about Marxism in modern English
idiom and spelling was written by Henry the Eighth.''
Third, if the Old Testament is to be viewed as a guide to
morality, then it is one of the most disgusting, repulsive documents of
its kind ever written; large parts of it are virtually unreadable
without a stiff dose of ondansetron.
But these many failings of the Old Testament (or of the bible in general,
of the Koran or whatever ``Holy Scripture'' is on offer at the moment)
should not lead us to reject it wholesale. Hidden among the horrors, the
absurdities and the sheer soporific tedium are a number of real gems,
most notably the Book of Job.
In the next installment I'll finally confront Kaia's question.
What is behind the sky? Where did we come from? What happens when we
die? What are we to make of this sometimes beautiful, sometimes ugly
world we find ourselves in? What does ``God'' have to do with it?
I have no answers, but I do have a vision I want to share. There is an evident danger here, succinctly put by British philosopher A.J. Ayer in his famous monograph ``Language, Truth and Logic'':
``If a mystic admits that the object of his vision is something which
cannot be described, then he must also admit that he is bound to talk
nonsense when he describes it.''
Nevertheless, I'm going to give it a go.
Handelian addendum
Some clarification of the previous post: I think the pattern is clear by now, that when it's in the worst stage I get kinda whiny about it. When I spoke of only having the energy to sit at the table for half an hour (watching the baking extravaganza), that was true at that particular time but it does get better.
One problem has been that for a couple of weeks now I've had a lingering cough/cold, which combined with the chemo does get a bit tiresome. Anyway, it's only bad for a few days at most following infusion, and even then I keep doing most of my normal stuff. For the next four weeks or so it should get better and better!
While I'm here I'll report that today's CT-scan went much more smoothly than the last, because (a) I made a point of only drinking half the bottle, and (b) they actually got me in on time. On the other hand, I have to constantly battle these nurses who want to draw blood for testing. Look, I get it analyzed every week and you've got it on the computer. I'm a quart low as it is and really don't want to donate blood to random passers-by. "Oh, but we need to test such-and-such for kidney function and they may not have done that." On the contrary, sir, I can assure you they test for everything. They test for basophils, monocytes, and nucleated RBC. They test for sodium, potassium and creatinine. They test for performance-enhancing drugs, LSD and crack cocaine. They test for anti-freeze, brake fluid, and recycled motor oil. They test for quarks left over from the big bang, and for little green men in miniaturized yellow submarines. Check it out if you don't believe me.
Five minutes he comes back. "You're right, you're good to go." Imagine that!
One problem has been that for a couple of weeks now I've had a lingering cough/cold, which combined with the chemo does get a bit tiresome. Anyway, it's only bad for a few days at most following infusion, and even then I keep doing most of my normal stuff. For the next four weeks or so it should get better and better!
While I'm here I'll report that today's CT-scan went much more smoothly than the last, because (a) I made a point of only drinking half the bottle, and (b) they actually got me in on time. On the other hand, I have to constantly battle these nurses who want to draw blood for testing. Look, I get it analyzed every week and you've got it on the computer. I'm a quart low as it is and really don't want to donate blood to random passers-by. "Oh, but we need to test such-and-such for kidney function and they may not have done that." On the contrary, sir, I can assure you they test for everything. They test for basophils, monocytes, and nucleated RBC. They test for sodium, potassium and creatinine. They test for performance-enhancing drugs, LSD and crack cocaine. They test for anti-freeze, brake fluid, and recycled motor oil. They test for quarks left over from the big bang, and for little green men in miniaturized yellow submarines. Check it out if you don't believe me.
Five minutes he comes back. "You're right, you're good to go." Imagine that!
Sunday, December 14, 2014
I can Handel it!
At the eighth meeting of the 8th floor SE tower Operatic Society, on Friday, Sara reported on her progress with the Handel opera "Semele" she will see in March (as will we). At first she didn't like the recording because it reminded her of "church music", specifically Handel's Messiah that her parents used to play all the time. Having listened to it a couple of more times, however, she now thinks it's great. "The singing seems really difficult", she added. I also learned that Jina (a nurse in the urology clinic who is my hero because she gave me a number to call that actually gets answered) used to be a professional ballerina. Will have to ask her about that on Wednesday.
It occurs to me that there could be a reader of this blog who also has done or is doing chemo, or knows someone who is. With that in mind, I don't wish to give the impression that it's all been easy. Friday night in fact was my worst yet, with that awful feeling of "looming nausea" (I don't know how else to describe it). But I can Handel it! I just get out on walks no matter what, this weekend being particularly beautiful. Any kind of distraction helps too, whether it is mathematics or Italian or football or opera (have just finished L'Elisir d'Amore, Pique Dame and Jenufa) or the original Swedish "Wallander" series (what better than a gruesome murder mystery to take your mind off things? Very well done). And of course the munchkins, although it's frustrating I have so little energy for really playing with them. Saturday the most I could manage was sitting at the kitchen table at their house for half an hour, watching them make Christmas cookies with their grandma.
It doesn't get any cuter than that! Kaia was wearing a typical outfit:
petticoat, her wedding "headband" and a Christmas apron. What a hoot! Wendy says that later Finley lost interest in the cookie-making and spent an entire hour playing with the soapy water in the sink. The little guy has an amazing attention span when he gets involved in one of his projects.
Speaking of opera and football, sometimes it's good to combine the two by turning off the TV sound and putting on opera instead. My real dream though is that after scoring a touchdown the player, rather than going into the hokey celebratory dance they like to do,
belts out the final measures of "nessun dorma", a la Pavarotti: "Vincero'...Vincero'...VIN...CER...OOOOO'! ("I will win".) Wouldn't that be cool?
Anyway, the good news is that I'm taking a break from the chemo as of now.
With Abby's Washington D.C. recital in early January, there's no way I'm going to get on a plane feeling like I do now. So (and they're very flexible about this) we won't start cycle 5 until January 9th. Actually it's not yet certain what the next steps will be. Tomorrow I have another CT-scan, then meet with the Doc (and Jina the Ballerina) on Wednesday. I don't intend to make any decisions until I'm feeling better, but at least I'll have more information. As to the CT-scan, now I know the drill. They should have a special half-size bottle for the "Mitchell bladder" that I and my siblings are all handicapped with, but they don't so you just have to smile and nod and when they're not looking pour half of it out.
For those who are interested, the next installment of "What's behind the sky?" will appear soon. Meanwhile, Happy Holidays!
It occurs to me that there could be a reader of this blog who also has done or is doing chemo, or knows someone who is. With that in mind, I don't wish to give the impression that it's all been easy. Friday night in fact was my worst yet, with that awful feeling of "looming nausea" (I don't know how else to describe it). But I can Handel it! I just get out on walks no matter what, this weekend being particularly beautiful. Any kind of distraction helps too, whether it is mathematics or Italian or football or opera (have just finished L'Elisir d'Amore, Pique Dame and Jenufa) or the original Swedish "Wallander" series (what better than a gruesome murder mystery to take your mind off things? Very well done). And of course the munchkins, although it's frustrating I have so little energy for really playing with them. Saturday the most I could manage was sitting at the kitchen table at their house for half an hour, watching them make Christmas cookies with their grandma.
It doesn't get any cuter than that! Kaia was wearing a typical outfit:
petticoat, her wedding "headband" and a Christmas apron. What a hoot! Wendy says that later Finley lost interest in the cookie-making and spent an entire hour playing with the soapy water in the sink. The little guy has an amazing attention span when he gets involved in one of his projects.
Speaking of opera and football, sometimes it's good to combine the two by turning off the TV sound and putting on opera instead. My real dream though is that after scoring a touchdown the player, rather than going into the hokey celebratory dance they like to do,
belts out the final measures of "nessun dorma", a la Pavarotti: "Vincero'...Vincero'...VIN...CER...OOOOO'! ("I will win".) Wouldn't that be cool?
Anyway, the good news is that I'm taking a break from the chemo as of now.
With Abby's Washington D.C. recital in early January, there's no way I'm going to get on a plane feeling like I do now. So (and they're very flexible about this) we won't start cycle 5 until January 9th. Actually it's not yet certain what the next steps will be. Tomorrow I have another CT-scan, then meet with the Doc (and Jina the Ballerina) on Wednesday. I don't intend to make any decisions until I'm feeling better, but at least I'll have more information. As to the CT-scan, now I know the drill. They should have a special half-size bottle for the "Mitchell bladder" that I and my siblings are all handicapped with, but they don't so you just have to smile and nod and when they're not looking pour half of it out.
For those who are interested, the next installment of "What's behind the sky?" will appear soon. Meanwhile, Happy Holidays!
Saturday, December 6, 2014
Ducks 51, Cisplatin 13
It's Saturday morning, after Day 1 of Cycle 4. On Day 1 of a cycle I'm in the infusion ward for at least seven hours; this time from 1 to after 8:30. So what are they actually doing all that time?
First, of course, they check your temperature, oxygen uptake and blood pressure. (These days you can't even go to the Jiffy Lube without someone wanting to take your blood pressure .)
Then they do a blood draw and send it off to the lab, and won't begin the infusion process until the report comes back. That can take up to an hour. If the report confirms that you're still alive, they start 2 hours of hydration (saline drip) for kidney protection, along with no fewer than three different anti-nausea drugs. Then the cisplatin, about an hour for that. Then a half-hour I think for the gemcitabine, then a couple more hours of hydration. Then they change the Picc dressing and you're good to go. It's a long process, but most of it is spent sitting around and doing whatever you feel like.
This time around was different because I had a cough/cold. With grandkids around (not to mention college kids) the only way to avoid getting sick would be to walk around all day in a hazmat suit. Although I try to keep sniffling grad students at bay, there's a point beyond which I refuse to miss my Kaia-Finley time! Last weekend we were up in my home office drawing pictures, using the electric pencil sharpener (I have exceptionally sharp pencils these days) and playing chess (Kaia is genuinely interested in how the pieces move; Finley is more interested in wreaking mass destruction across the board). Anyway, with Kaia sitting on my lap coughing, I guess it's no surprise that I finally got it too.
I called Sara the nurse practitioner for advice, she consulted the doc and the upshot was that I would come in anyway and she'd check me out at the beginning before giving the all clear.
So we're still awaiting the lab report when Sara, effervescently cheerful as always, pops her head into the luxury suite, in this instance serving as the biohazard isolation unit: "Mr. Mitchell! How ARE you?" Now, we've had "the talk" about how even my undergrads are given the choice of addressing me either as "Herr Professor Doctor Mitchell" or "Steve", but Sara (who I believe is in her 30's) insists on "Mr. Mitchell". At first I panicked: Should I have been calling her "Nurse Practitioner Hunt" all this time? "No, no" she laughed, just "Sara". Seems asymmetrical, but okay.
Then she sees the bandage on my right (non-Picc) forearm and wants to know what that's about. Oh, I took a fall on a steep, muddy, icy trail in the park during that cold weather. All the weight came down on the arm. "MISTER MITCHELL!!" she exclaims in some indeterminate mix of real and pretended horror, "WHAT are you doing? If your platelets are low you could bleed to death!" Yeah, but my platelets have been fine so far. Just then the lab report comes in on the computer. "Hematocrit looks fine...your platelets are good..." See? I told you so! These are not ordinary platelets we're talking about, they are the platelets of a TOPOLOGIST!
On the other hand, I was feeling worse and worse from the moment I set foot in the medical center.
It might be the cold, but I also suspect a certain psychosomatic effect, that my subconscious has learned that these visits are followed by feeling lousy the next day, and has perversely decided to speed up the process. I'll have to try some imagery/self-hypnosis/whatever ahead of time to ward it off. (Darn subconscious! If you have something to say, just say it for cryin' out loud!) Was only able to read a few pages of "Spin geometry", although it did result in a modest breakthrough. Switched to reading Italian. Even that was too much. Listened to my current audiobook, "La provinciale" by Alberto Moravia. Couldn't eat anything. The one saving grace, though, was that the Ducks were playing Arizona for the Pac-12 championship at 6, and for the first time ever I turned on the TV.
The Ducks being the Oregon Ducks, for those who are not quacker backers. (My infusion nurse's interest in such things was quickly revealed by her question "is it a basketball game?") Now, I can hear the gasps of horror coming from Husky-land, the horror that I, a Husky Professor, could even moonlight as a quacker backer. But in this, as in so many ways, I have always been peculiar. To me it is not so much about rooting for a home team, it is about the game itself. My dream, in fact, is that football games would be conducted like Wimbledon: As the players break from the huddle, the umpire admonishes the crowd "Quiet please", and there is absolute silence in the stadium as the quarterback calls the signals. It would be so much more exciting and suspenseful! And sensible; why should the crowd interfere with the opposing quarterback? It's about seeing excellent play, not artificially influencing the outcome. Oh well. I am resigned to my fate as a social outcast and oddity.
In any event, I was glad to be able to watch the entire first half and the start of the second, with my wonderful Wendy who arrived at dinner time. She likes the Ducks' uniforms.:) Still couldn't eat but the game was a nice distraction. Final score, in my book: Ducks 51, Cisplatin 13.
Well, my motto has always been: If you don't feel like getting out for a walk, you should immediately get out for a walk. As now I shall, topologically reinforced platelets and all. Quack Quack!
First, of course, they check your temperature, oxygen uptake and blood pressure. (These days you can't even go to the Jiffy Lube without someone wanting to take your blood pressure .)
Then they do a blood draw and send it off to the lab, and won't begin the infusion process until the report comes back. That can take up to an hour. If the report confirms that you're still alive, they start 2 hours of hydration (saline drip) for kidney protection, along with no fewer than three different anti-nausea drugs. Then the cisplatin, about an hour for that. Then a half-hour I think for the gemcitabine, then a couple more hours of hydration. Then they change the Picc dressing and you're good to go. It's a long process, but most of it is spent sitting around and doing whatever you feel like.
This time around was different because I had a cough/cold. With grandkids around (not to mention college kids) the only way to avoid getting sick would be to walk around all day in a hazmat suit. Although I try to keep sniffling grad students at bay, there's a point beyond which I refuse to miss my Kaia-Finley time! Last weekend we were up in my home office drawing pictures, using the electric pencil sharpener (I have exceptionally sharp pencils these days) and playing chess (Kaia is genuinely interested in how the pieces move; Finley is more interested in wreaking mass destruction across the board). Anyway, with Kaia sitting on my lap coughing, I guess it's no surprise that I finally got it too.
I called Sara the nurse practitioner for advice, she consulted the doc and the upshot was that I would come in anyway and she'd check me out at the beginning before giving the all clear.
So we're still awaiting the lab report when Sara, effervescently cheerful as always, pops her head into the luxury suite, in this instance serving as the biohazard isolation unit: "Mr. Mitchell! How ARE you?" Now, we've had "the talk" about how even my undergrads are given the choice of addressing me either as "Herr Professor Doctor Mitchell" or "Steve", but Sara (who I believe is in her 30's) insists on "Mr. Mitchell". At first I panicked: Should I have been calling her "Nurse Practitioner Hunt" all this time? "No, no" she laughed, just "Sara". Seems asymmetrical, but okay.
Then she sees the bandage on my right (non-Picc) forearm and wants to know what that's about. Oh, I took a fall on a steep, muddy, icy trail in the park during that cold weather. All the weight came down on the arm. "MISTER MITCHELL!!" she exclaims in some indeterminate mix of real and pretended horror, "WHAT are you doing? If your platelets are low you could bleed to death!" Yeah, but my platelets have been fine so far. Just then the lab report comes in on the computer. "Hematocrit looks fine...your platelets are good..." See? I told you so! These are not ordinary platelets we're talking about, they are the platelets of a TOPOLOGIST!
On the other hand, I was feeling worse and worse from the moment I set foot in the medical center.
It might be the cold, but I also suspect a certain psychosomatic effect, that my subconscious has learned that these visits are followed by feeling lousy the next day, and has perversely decided to speed up the process. I'll have to try some imagery/self-hypnosis/whatever ahead of time to ward it off. (Darn subconscious! If you have something to say, just say it for cryin' out loud!) Was only able to read a few pages of "Spin geometry", although it did result in a modest breakthrough. Switched to reading Italian. Even that was too much. Listened to my current audiobook, "La provinciale" by Alberto Moravia. Couldn't eat anything. The one saving grace, though, was that the Ducks were playing Arizona for the Pac-12 championship at 6, and for the first time ever I turned on the TV.
The Ducks being the Oregon Ducks, for those who are not quacker backers. (My infusion nurse's interest in such things was quickly revealed by her question "is it a basketball game?") Now, I can hear the gasps of horror coming from Husky-land, the horror that I, a Husky Professor, could even moonlight as a quacker backer. But in this, as in so many ways, I have always been peculiar. To me it is not so much about rooting for a home team, it is about the game itself. My dream, in fact, is that football games would be conducted like Wimbledon: As the players break from the huddle, the umpire admonishes the crowd "Quiet please", and there is absolute silence in the stadium as the quarterback calls the signals. It would be so much more exciting and suspenseful! And sensible; why should the crowd interfere with the opposing quarterback? It's about seeing excellent play, not artificially influencing the outcome. Oh well. I am resigned to my fate as a social outcast and oddity.
In any event, I was glad to be able to watch the entire first half and the start of the second, with my wonderful Wendy who arrived at dinner time. She likes the Ducks' uniforms.:) Still couldn't eat but the game was a nice distraction. Final score, in my book: Ducks 51, Cisplatin 13.
Well, my motto has always been: If you don't feel like getting out for a walk, you should immediately get out for a walk. As now I shall, topologically reinforced platelets and all. Quack Quack!
Thursday, November 27, 2014
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''.
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''.
Saturday, November 22, 2014
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.
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!
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!
Monday, November 17, 2014
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?
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?
Wednesday, November 5, 2014
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."
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."
Sunday, November 2, 2014
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!
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!
Sunday, October 26, 2014
October 26 hic hic hic
Well these posts are starting to get repetitive but I figure I may as well give a progress report. Friday was my second double-dose infusion day, 7 hours in the "infusion bays" as they are called, although not, alas, in the luxury suite. Still managed to get a lot of math done, for instance reading some notes on group cohomology and coming to a proof that was total nonsense and thinking "what is this idiot talking about?" Oh wait, I wrote these notes last year.
The nurse practitioner continues to be baffled by my high energy state and is going to ask the doctor about it. However, on the double-dose weekends I'm not so high energy, generally feeling blah but still perfectly functional. The worst of it is still the hiccups, which can be stopped by various means but for some reason are set off again every time I get up from a chair or from lying down, or occasionally just rolling over in bed. Among the many hiccup-stopping methods I've tried there are two that still have a perfect record. The first, which I've already mentioned, is the Finley-inspired method of stuffing blueberries into your mouth as fast as you can chew them (although Finley often regarded the chewing as superfluous, preferring to store large quantities in his cheeks like a chipmunk). So far I'm 8 for 8 with this method. But I'm getting the hiccups 20 times a day or more, and you can only eat so many blueberries. For the second method I thank Kari Crabtree: Fill a glass with water, sit down, place it between your knees, bend over and drink it continuously with a straw. Started this one today and so far I'm 4 for 4. So between the two I get lots of fruit and lots of water, both of which are recommended during chemo. Tomorrow should be my last hiccup day. Until the next double-dose, that is.
Naturally I've also been offered more medication for dealing with hiccups. In other words, medication to deal with side-effects of other medicines I'm taking to deal with side-effects of chemo. But of course the hiccup meds also have side-effects...so where does it end? For now I'm going to gut it out with blueberries and LOTS of water.
Anyway, maybe I'll stop posting these medical updates unless something new and significant happens. I hope to start a new series of posts soon, on more interesting (at least to me) philosophical themes.
The nurse practitioner continues to be baffled by my high energy state and is going to ask the doctor about it. However, on the double-dose weekends I'm not so high energy, generally feeling blah but still perfectly functional. The worst of it is still the hiccups, which can be stopped by various means but for some reason are set off again every time I get up from a chair or from lying down, or occasionally just rolling over in bed. Among the many hiccup-stopping methods I've tried there are two that still have a perfect record. The first, which I've already mentioned, is the Finley-inspired method of stuffing blueberries into your mouth as fast as you can chew them (although Finley often regarded the chewing as superfluous, preferring to store large quantities in his cheeks like a chipmunk). So far I'm 8 for 8 with this method. But I'm getting the hiccups 20 times a day or more, and you can only eat so many blueberries. For the second method I thank Kari Crabtree: Fill a glass with water, sit down, place it between your knees, bend over and drink it continuously with a straw. Started this one today and so far I'm 4 for 4. So between the two I get lots of fruit and lots of water, both of which are recommended during chemo. Tomorrow should be my last hiccup day. Until the next double-dose, that is.
Naturally I've also been offered more medication for dealing with hiccups. In other words, medication to deal with side-effects of other medicines I'm taking to deal with side-effects of chemo. But of course the hiccup meds also have side-effects...so where does it end? For now I'm going to gut it out with blueberries and LOTS of water.
Anyway, maybe I'll stop posting these medical updates unless something new and significant happens. I hope to start a new series of posts soon, on more interesting (at least to me) philosophical themes.
Thursday, October 23, 2014
October 23. Still surfing the wave.
It is now day 21 of chemotherapy. I continue to have more energy than
I've ever had in my life. Yesterday I got up at 6am, already thinking
about mathematics, left around 7am and did my 40 minute commute
listening to my current Italian audiobook (La Coscienza di Zeno, by
Italo Svevo, if anyone cares to know). Worked on math until my 9:30
class and gave another energetic lecture. Had my customary large salad
for lunch (I've become an herbivore as leafy greans are supposed to help
the red blood cells, often grazing on ferns and leaves with the deer in
the park). Took a nap, after which I discovered that the speaker for our
informal seminar on group cohomology was sick for the second week in a
row, so decided to talk in her place. Cooked up a lecture in no time.
Had office hours, then off to the seminar and held forth for an hour on
the cohomology of extraspecial 2-groups. Drove home (more of Signor
Svevo), had leftover Thai (my wife being out on the town for a Boeing
dinner). Fell asleep on the couch for a while, which is pretty normal
for me these days, but then worked on math from 8 to 1 in the morning
which is totally abnormal. Usually I'm in bed by 10:30 and not really
good for much for the hour or two before that. Wasn't all that sleepy
at 1, but went to bed anyway. It's been more of the same today.
It is really, really bizarre. I haven't done any research for several
years now, but in this chemo-induced hyperstate I almost feel like
starting it up again. I can picture the acknowledgments: ``I'd like to
thank Dr. X and the UW Med oncology team for their contributions to this
paper, and the 8th floor infusion ward for providing a quiet, hospitable
environment in which to work...'' Well, tomorrow is the double-dose,
cisplatin and gemcitabine. I know my platelets are beginning to drop, so
maybe the red blood cells are next. It's also when you start to lose
hair, at least in many cases. The suspense is still killing me. When
does it all start? Still waiting...
It is now day 21 of chemotherapy. I continue to have more energy than
I've ever had in my life. Yesterday I got up at 6am, already thinking
about mathematics, left around 7am and did my 40 minute commute
listening to my current Italian audiobook (La Coscienza di Zeno, by
Italo Svevo, if anyone cares to know). Worked on math until my 9:30
class and gave another energetic lecture. Had my customary large salad
for lunch (I've become an herbivore as leafy greans are supposed to help
the red blood cells, often grazing on ferns and leaves with the deer in
the park). Took a nap, after which I discovered that the speaker for our
informal seminar on group cohomology was sick for the second week in a
row, so decided to talk in her place. Cooked up a lecture in no time.
Had office hours, then off to the seminar and held forth for an hour on
the cohomology of extraspecial 2-groups. Drove home (more of Signor
Svevo), had leftover Thai (my wife being out on the town for a Boeing
dinner). Fell asleep on the couch for a while, which is pretty normal
for me these days, but then worked on math from 8 to 1 in the morning
which is totally abnormal. Usually I'm in bed by 10:30 and not really
good for much for the hour or two before that. Wasn't all that sleepy
at 1, but went to bed anyway. It's been more of the same today.
It is really, really bizarre. I haven't done any research for several
years now, but in this chemo-induced hyperstate I almost feel like
starting it up again. I can picture the acknowledgments: ``I'd like to
thank Dr. X and the UW Med oncology team for their contributions to this
paper, and the 8th floor infusion ward for providing a quiet, hospitable
environment in which to work...'' Well, tomorrow is the double-dose,
cisplatin and gemcitabine. I know my platelets are beginning to drop, so
maybe the red blood cells are next. It's also when you start to lose
hair, at least in many cases. The suspense is still killing me. When
does it all start? Still waiting...
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