Monday, January 26, 2015

An amazing day!

I don't usually post on consecutive days, but today has been pretty amazing. I think I may be experiencing another ondansetron high for the first time in a while; I'll take it!

Actually I have to start with yesterday evening. Wendy's enchiladas were the best ever and I ate two of them, plus more of the Italian cake. It's been quite a while since I've had that much of an appetite, which is great in itself. Plus Kaia was at her absolute cutest, all enthusiastic about helping Wendy in the kitchen and serving us all. She would put the sour cream on the table saying "This is sour cream to put on your enchiladas", then the same with the avocados and finally the plate of enchiladas "this is for grandpa" etc. As they were leaving grandpa pulled the old garbage trick to help out the parents; they still find it quite a treat to help me take the garbage down the stairs. Every time Finley insists on carrying the "green bag" (compost), and every time he seems quite disturbed that the green bag doesn't go in the green can. Sorry Finley, it goes in the gray one!

Today it's been another beautiful, bizarrely warm day. Don't mean to rub it in for those of you who either (a) live in Boston or (b) are trying to get to New York (hi Abby!) but I've been walking around outside in just a t-shirt. Well, pants too. My class went especially well. I was a bit bugged because I had to go down to the med center again. The Picc problem is pretty bad; my arm looks like
weasels ripped my flesh. (Trivia quiz: the weasel reference is to an album c. 1970. Can you name the group? Can you describe the album cover? No internet cheating!)  But the walk through campus was so beautiful, who cares? And it's always fun to see Sarah, who before even looking at my arm gushed enthusiastically about Seattle Opera's next season, wondering what operas she should go to. Well, Marriage of Figaro is obviously a must-see. I asked if she'd seen the Shawshank Redemption, pointing out that the beautiful duet what's-his-name plays over the prison loudspeakers is from Figaro. She had, a really lit up at that. Plus the Pearl Fishers is also mandatory, with its famous beautiful male duet among other things. I think I've got her convinced that I'm a real opera expert.

We're trying a new approach that I hope will work. But the main thing is that paradoxically I feel fantastic today. My mathematical brain is humming along at a brisk pace (local cohomology, where have you been all my life? How could I not be aware of the connections to group cohomology? Fabulous stuff, that I'm working on with James my second student.) Walking back to the math dept I found myself spontaneously singing a different James, Mr. Brown, even though I've never been a Motown fan: "I feeeeeeeeeeeeeeeel good!! I knew that I would now..."

So I have renewed hope: one more nasty weekend of cisplatin, and I should be home free.

Meanwhile tonight, more enchiladas and a West Wing evening! Only five episodes left and we'll have finished all seven seasons. It'll be kind of sad, ending it.

Ciao a tutti, i belli e i brutti! (a standard and amusing Italian expression "hello/goodbye to all, the beautiful and the ugly" that rhymes in Italian)

Sunday, January 25, 2015

One cycle to go

It's a beautiful and unseasonably warm day today. Can't say I feel great after Friday's infusion, but compared to last weekend it's a vacation.

On Friday I was momentarily excited when it was mentioned that the PICC could come out that day, but Susan (the other nurse practitioner) cautioned against it. Even the two infusions I have left to go could damage veins and risk infection if delivered by normal intravenous means. So I guess I'll gut it out until Feb. 13. The problem is that the skin around the PICC has become extremely irritated with horrible itching. As usual a legion of PICC-nurses came by to look at me (typical reactions: "that's weird...I've never seen that before"...etc) and we're trying the umpteenth experiment to fix the problem. I seem to be a real outlier in the PICC-world.

Also, the lab work revealed a very low neutrophil count (i.e. compromised immune system), below the level at which they will normally proceed with infusion.  After consultation with the oncologist however I was, as I expected, granted a topologist's exception and we proceeded anyway. In earlier cycles at Day 8 (the second infusion of the cycle) I got stomach injections of "nulasta", a whitecell booster that worked extremely well. Then it turned out the insurance company wouldn't cover it, despite repeated appeals by the oncologist, so now we're winging it with prophylactic antibiotics. I'm supposed to be extra careful about exposure to sick people, but that's pretty hard to do. I did promise them that I wouldn't handle any rabid bats for a while.

To be honest I'm pretty damn tired of the chemo. Taking a cue from Gone with the Wind I told Sarah and Dana (one of the infusion nurses; great sense of humor) "As God is my witness, I will never do chemo again". Sarah's reaction was "never say never", but the way I feel now I really would not. Either find another treatment, or die trying, is my current position. Well, sorry to be overdramatic but when the final cycle is over and the next CT-scan results are in, I really have no idea what happens next. The optimistic view is that I'll be "cured", with the fallback position being, I hope, the new immunotherapy if it gets FDA approved.

Anyway that's neither here nor there and largely irrelevant for life in the moment. Mainly I'm just looking forward (understatement of the century) to being off chemo, PICC-less, and heading out on hikes. Get out on the bike as soon as my strength is back, or maybe before, as who needs strength for my version of biking (Sammamish river trail, flat as a pancake).

Meanwhile life is great, if I ignore the chemo! In my class we're studying a beautiful subject known as Galois theory, after early 19th century French mathematician Evariste Galois. He was a visionary far ahead of his time who developed his theory at age 19 and was killed a year later in a duel. My senior Ph.D student has a post-doc offer from UBC, one of his top choices, and is short-listed at a mathematical institute in Copenhagen that would really be cool. It's a big psychological boost not only for him but also for me. My junior Ph.D student is doing extremely well and may turn out to be even better. So, although I'm pretty much a has-been as far as my own research, I seem to be having renewed success with Ph.D students.

And of course, Kaia and Finley always cheer me up! Recently Kaia and I had a long conversation about dinosaurs, a subject on which I was more expert at age 9 than I am today. Among other things she wondered whether you would be squished if a Brontosaurus stepped on you, a question I was able to answer authoritatively. She also was quite proud to show us her new desk in her bedroom (she's growing up!!) and all the art projects she's been working on. Finley meanwhile continues to amaze me with his concentration span for building projects (railroads, legos etc). Needless to say he can also be a little rascal at times, as when he insisted that he wanted an entire half a loaf of bread for himself.
"But Finley, you'll turn into a loaf of bread," I cautioned. To which he replied very seriously "No I would not."

Ongoing support from family and friends has been wonderful and means a lot to me. Wendy has been making me all kinds of yummy things: a delicious new potato-soup recipe, superhealthy smoothies, and COCONUT OATMEAL COOKIES. Yum!

I was very touched by moral support from an unexpected source, namely my Italian teachers Elisabetta and Roberta, co-founders of the school Percorso Italiano where I've been taking lessons since 2010. I had told Elisabetta about my cancer because she has a lot of experience with relatives and inlaws who have had it (her mother died of it). I haven't had any lessons for a while, and told Elisabetta I better wait until Feb. 2 during an "off" week. To my surprise she and Roberta wrote back together offering to come out to our house Saturday (yesterday) for an Italian chat, and that they would bring dolci (sweets). Although very much appreciating such a kind offer, I said it wasn't a good idea as there was no telling what condition I'd be in on Saturday. And that was that, or so I thought until Saturday afternoon while working in my office an email came in saying (in Italian, of course) telling me to "look outside our front door" when I had a chance. It turns out that the two of them somehow came up the steps to the front door without either Wendy or I noticing and left a package of pasta, homemade pasta sauce, a homemade cake, a book and a note saying to get well soon because "Percorso Italiano isn't the same without you". I was totally floored by this, still haven't gotten over it. The pasta and the cake are delicious!

It really is a Beautiful World. The wonderful Brown family is coming over for enchiladas this evening and I had best sign off to rest up for the Nutty Nut Show. To be followed by Downton Abbey of course.

So glad I avoided duels in my youth!

 

Saturday, January 17, 2015

One down, three to go

Having the flu and then chemo has little to recommend it, so if I were you I'd avoid it. However, I was very relieved to get the green light yesterday to proceed, as I'm anxious to just be done with it.
My current audiobook is Victor Hugo's Les miserables (or in my version, I miserabili), and I must say I feel a certain solidarity with the title characters.

I was the only one in the infusion ward after about 5, hanging out in the luxury suite imbibing the Nectar of the Gods. Talked with one of the nurses about the recent free climb of the Dawn Wall in Yosemite that's been in the news a lot. Actually Jay and I did it first in 1972, without ropes, at night with no headlamps. That 8 foot "dyno" leap (you can see it online) was a little spooky in the dark.

By the way Sarah and Jina absolutely loved Tosca! So we've definitely got a couple of new opera fans.

This weekend I'll just be distracting myself from the chemo-crud with my usual shenanigans. Well, the Seahawks, for one thing! Not to mention the Patriots, in honor of Jan and Jerry (although I have a certain fondness for Indy, and Andrew Luck is fun to watch). Plus a Ph.D. student and I are looking around at Castelnuovo-Mumford regularity for equivariant cohomology rings for a thesis problem. It's cool stuff; let me know if you have any ideas! Plus Italian, of course. I have a new correspondent, Sabina, a 45-year old who teaches Italian in Austria and found my Italian website. She is talkative to put it mildly; to the question "how did you end up in Austria?" she answered with her complete life story including an unhappy childhood with a difficult overbearing father and depressed mother, working in Austria as an "au pair" for a rich, arrogant couple who were mean to her and called her "the Italian" rather than by name, and finally discovering true love (an Austrian), marriage, two children of her own. She sent me her own translation into Italian (from Venetian dialect) of "La locanderia", a famous 18th century play by Gordoni. It's been fun reading it; reminds of me of various comic operas by Mozart, Rossini etc. and indeed I believe was made into an opera but not by anyone famous. Anyway the more distractions the better from this "miserabile" chemo.

The day after Christmas we went to the funeral of Wendy's cousin Scott. Some of you might remember him from Warren and Shirley's wedding; his two brothers carried him in his wheelchair up the stairs. He was diagnosed with MS in his twenties, and died of it at 50. Compared to that, getting cancer at 63 is a walk in the park.






Friday, January 9, 2015

Nothing to report

Alas, I'm sick today and we had to postpone the chemo 'till next Friday. Annoying since I'd like to get it over with, but it doesn't make sense to take a cisplatin hit when feeling this bad (some weird flu-like symptoms).

I felt great though on our DC trip; Abby's recital was awesome! Jessie came with us, Jan and Jerry and Genny met us there, and Abby and Oliver came back on the same plane with us for a Seattle visit. A very fun, if short, vacation.

Wednesday, December 17, 2014

CT report

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...

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!