Chemo party; Super-Grandpa vs. Santa Claus

It was downright festive yesterday at the infusion ward, like being reunited with old friends. Hey, great to see you again!

The primary nurse assigned to me was Dana, the one I exchanged many movie reviews with. She's quite a character, with a quirky sense of humor, delivered in a deadpan style. At times it takes me a while to realize it was a joke; you have to be on your toes. She just celebrated her 60th birthday by running a half-marathon. Around mile ten, she said, she remembered why she stopped doing these. Tom is a great guy I've been assigned often. He's the one who complimented me so highly on my veins (actually I get this a lot around people whose job it is to stick needles into you). He said his wife gets mad when they're holding hands and he starts running a finger over her forearms, looking for a good vein. Rose just got back from a trip to Italy, but I didn't have much chance to talk to her yet. A great vacation Venice to Florence (well, da Venizia a Firenze) is all I know so far.

On Wednesday I'd done my bike-and-hike on a beautiful day, feeling great and in fact more energetic on both the bike and the steep hill-walking than ever. It makes it soooooooooo frustrating to go in and deliberately destroy that feeling. But dying would also be very annoying, so what can you do.
Day 1 is easy though. Get the PICC in, order a pot of coffee in the luxury suite and get out my math and Italian: complex cobordism of classifying spaces; Il marchese di Roccaverdina by Luigi Capuana. Very interesting so far and with lots of dialogue, (in the Italian novel I mean, not the cobordism!) which makes an easier read. It was written in 1901 so in effect a 19th century novel; I've found I tend to like this period, which includes also a surprising number of female authors. Also brought with me and finished the audiobook of ``Una stanza tutta per se''' by Virginia Woolf (it was 8 and a half hours in the ward, so lots of time to kill), a well-read translation of ``A room of one's own''. Never having read anything by her, it seemed appropriate to get the original English version too from the library. She certainly has a style of her own. It is a fiery feminist lament and call to action, written in 1928 (well, many of you have probably read it; odd that it took me so long!). Highly recommended, and short as it based on two lectures she gave on ``Women and fiction''.

Last night I went to bed not feeling all that great, then gradually felt better and better, was wide awake and thinking about math.
Finally got up at 1 and worked a bit on math and also on a short review of Woolf's essay for my Italian book reviews. The ondansetron effect has kicked in already! Went back to bed at 2:30 but still wasn't sleepy.

Today my body has reminded me that chemo is not inconsiderably unpleasant. Hiccups have started too, although at least those only come in week 1 of the cycle, from the dex. I'm not doing too bad though. While I'm typing, two young coyotes have been crashing around in the bushes right outside my window. If they're hunting, their parents ought to offer some advice; any rabbit within a hundred yards will hear them. Or maybe it's a strategy to flush out little critters. Or maybe they're just playing!

I'm very disappointed to miss Rebecca's wedding in California, but I made the right decision. Both the plane trip and the event would have been pretty miserable both for me and anyone around me. I insisted that Wendy go however (notice that English DOES have a subjunctive, albeit a pretty pathetic one) because there's really nothing anyone can do, not even my amazingly supportive wife. Enjoy the rehearsal dinner tonight! (I doubt I would. That reminds me, I need to talk to the med center about their choice of words on the dinner menu: ``vegetables infused with Thai flavor''.)

On another topic, I always feel vaguely bad about lying to children about Santa Claus, not to mention the Easter Bunny and the Tooth Fairy. Jessie and Abby seem to have gotten over it and forgiven us, I think, but I still get that feeling now with my grandkids.
The issue came up on our Sunriver trip, in a way that surprised me. I was joking around about being Super-Grandpa, making a muscle with my biceps, to the extent that I have any left. I'm so strong I can pull a cloud down from the sky! I boasted, assuming this would be met with laughter and derision. Finley (all who know him can picture his wide-eyed expression) grabbed my arm and exclaimed, ``For real? In REAL LIFE?'' Rashly seizing the moment, I said yes, in real life! Super-Grandpa can even walk upsidedown on the ceiling! To my surprise even Kaia got in on this, i.e. instead of laughing ``no you can't'', both seriously wanted me to go out on the deck and pull down a cloud. Oh boy, now I'd gotten myself in a pickle. I invented a series of excuses to get out of it,
saying I'd do it the next morning---by which time, I thought, they'd have forgotten all about it.
 Not so. They came running up to the kitchen the next morning: ``Grandpa, we want to you to pull a cloud down from the sky!''
 Finley helpfully pointed out that several clouds were conveniently available, right above us.  Well, the jig was up. I had to confess that I made it all up. But as I said to Kaia, you didn't really think I could do it, did you? Do you really think someone could pull a cloud down from the sky, or walk upside down on the ceiling? Her reply:

 ``Well, a man couldn't really fly around at Christmas delivering toys to all the children in the world. There would have to be magic.''

 Oh dear. I have disillusioned her. She thought I had the magic too? And then:

 ``But even if you're not Super-Grandpa and can't walk upside down on the ceiling, you're still a super grandpa because you do super things.''

 If that doesn't melt your heart, I don't know what will.

Gearing up for round two

Now that I'm starting up chemo again, I intend to post more regularly to the blog.  I imagine I'll be saying a lot of the same old things, but it's definitely good therapy for me to talk about it. To those who take the time to read my muddled and often repetitive thoughts, thank you!
As always, it doesn't bother me to talk about the worst case scenarios, including death. Indeed it does me no good at all to ignore such grim realities. I don't dwell on it. I don't worry about it. I don't give in. But to pretend that it couldn't happen serves no purpose. So I'll briefly report on the negative side, and move on.

I saw the radiology report before we went on our Sunriver vacation, but didn't see the oncologist until after. So I knew about the possible metastasis to the liver. I'm well aware, of course, that this is a bad sign. But I can honestly say I didn't worry about it one bit. Thought about it, sure, but didn't worry. It didn't detract at all from a fabulous vacation. My standard mantra has been very effective: I'm here now. It's a beautiful day along the Deschutes river. I'm riding bikes with my two amazing little grandchildren. What happens next week, or  next month, or next year, is irrelevant.
Yesterday I had a ``refresher chemo course'', if you will, with nurse practioner Susan. Since the oncologist has said that untreated bladder cancer can kill you in three to six months, but never gives examples, I asked Susan point-blank if she had personal experience with such cases. She said yes, but gave only one example of someone who refused chemo and within six months was in terminal hospice care (okay, so the guy didn't actually die within six months, but close enough). One can also judge the seriousness of the situation from the fact that not only did the oncologist think postponing the chemo until after Italy (i.e. 2 months) was too risky, but also Susan seemed dubious about taking even the three-week chemo break that our planned trip would entail (it's only a two week trip, but I need some recovery time ahead of it). However, there's no point in worrying about this now. After the first two cycles of chemo, i.e. in late August, they'll do another scan and we'll re-evaluate the situation then.

Well, enough of that! The fact is I'm feeling very relieved, now that the chemo decision is final. I did pretty well with the chemo last time, but I'm making it my goal do even better with the second go-around. At least now I know what to expect. I'm even looking forward to seeing all the nice folks of 8th floor southeast (the infusion ward) again!

I'm a little disappointed that I don't have Sarah, the opera nurse practitioner. According to Susan, Sarah said ``I hate to give up Steve'' but had to for scheduling reasons. (Or maybe she really said ``thank goodness I can pawn off that Mitchell character on Susan''.)  During the ``refresher'' another nurse poked her head in and said ``oh, you're the opera guy!''.

The doc thinks the chemo will help my exasperating bladder symptoms, which have gotten even worse of late. That alone will make it worthwhile. Meanwhile Susan suggested the use of a ``condom catheter'', a term that is, I hope, self-explanatory. She proceeded to get out some samples and asked me whether I needed a small, a medium or a large. Are you kidding me? Obviously I need the extra-large, the ``Trump special''.  ``Deanna can show you how to use it,'' says Susan cheerfully. Now Deanna is a nurse I hadn't met yet, although she happened to be on duty at a time I was sending irate emails about UW Med's god-awful appointments system. Too late, I realized that if a nurse is going to give you hands-on condom catheter instruction, it's probably best to stay on her good side. Of course I never blamed the urology clinic, and certainly not the nurses. ``That's okay,'' Deanna reassures me, ``your emails always had a sense of humor.'' As it turned out, no rooms were available for the instruction, and I was relieved to postpone it to a future date. In any case, it's good to know it's an option, especially for a transatlantic flight.

I'm psyched up for Thursday, then, which will be a long day since not only is it the double-dose but they have to place the PICC. I've got my math ready. I've got my Italian ready.  It should be a productive session in the old infusion ward!

Decision made

Just a brief update to say I've decided to follow the doc's advice and start chemo next Thursday.
I still hope to make the Italy trip work, and in fact I may have a better shot at it with the chemo than
without; the doc thinks the chemo may improve my exasperating bladder symptoms (which have not
improved much at all in the two months since surgery).

For me, by far the most anxiety-producing part of this experience is making such decisions. Once
the decision is made, however, it's back to full steam ahead!

I'll need plenty of steam to keep up with the munchkins. In a baseball game (I use the term loosely) with Finley and Kaia yesterday evening, almost any hit was declared by Finley to be a "ten-run homer" and my one bunt was decreed to be a "grand slam", surely a first in the history of baseball. The one hitch was that I was supposed to "run around the bases ten times". Uh, grandpa's kinda tired right now. "That's okay," says Finley, "you can just run slow."

Decision point

I might as well get straight to the bad news: it appears that the cancer has metastasized to the liver.
I knew this before even seeing the oncologist, since radiology sends the report to me directly via email. (The oncologist hates that they do this, but I like it because I'd rather have an inkling ahead of time rather than be blindsided by the news at the clinic.) The radiologist report reads (referring to the liver):

Interval development ill-defined segment 7 hypodensity (3/106), measuring 1.6
cm this concerning for metastasis.

(That's a copy, complete with missing verbs and punctuation.) To be certain that the "ill-defined segment" is cancer would require a biopsy, but based on my history and the scan, the oncologist seems to have little doubt. He thinks I should begin "therapy" immediately, which brings me to the decision point.

The easier decision is what form of therapy to choose. Although there are some newer options that I've mentioned before, I would go with the devil I know, namely the delicious cisplatinum-gemcitabine cocktail, the Nectar of the Gods, served on 8th floor Southeast. The oncologist agrees. The hard decision is whether to do it at all, and if so, when.

One frequently sees obituaries of so-and-so who died "after a long, courageous battle with cancer".
While I have great admiration for such courage, I'm not sure I have it and in any case a "long battle" may not be the path for me. One side of me wants to say screw it, let's forget chemo entirely.
If I had a crystal ball and knew that to a high probability the cancer would get me in a couple of years no matter what, I would definitely forgo therapy and focus on enjoying life while I still feel good, rather than eke out a bit more time at the cost of feeling miserable. I don't know that I have the guts, though, for this all-or-nothing gamble.

On the other hand, the thought of spending the rest of my summer on chemo is not very appealing. In fall at least I could use it as an excuse to get out of committee meetings. My idea would be to
wait until we're back from Italy, but the oncologist is strongly against waiting that long. He has
emphasized on several occasions that bladder cancer can be very aggressive, so I understand his point, but we're talking two months and a patient who (if I do say so myself) has consistently defied the norms. Naturally, the oncologist is going to be conservative and thinks of worst-case scenarios.

At any rate, for the moment I am scheduled to begin chemo next Thursday. The theory is that I would squeeze in two 3-week cycles before leaving for Italy, then take a break. But I've told them that I'm not yet committed to doing this, and may cancel. It's a gamble, yes. That's the decision I have to make. Curse you, ill-defined segments!

Well, enough of that. Apart from my annoying bladder symptoms, I still feel perfectly fine. We just got back from a wonderful vacation in Sunriver with Jessie and family: Hiking, biking, waterslides, bumper-cars, mini-golf, climbing walls, watching the Mariners (if you miss an inning, Kaia can fill you in with an accurate blow-by-blow summary). Anyway, to stay grounded I always like to end with a kid-quote:

I was about to tell Kaia and Finley the latest episode of a series of stories about them, in which they
usually rescue mischievous kittens Fluffy and Tuffy from various evil-doers such as the Three-headed Wafflesnort and the nefarious Dr. Drooly Trashit. The title of this one was "Kaia and Finley build a time machine". I began with a preview, knowing that they'll want to add lots of details.

Me: You'll go way back in time, to the days of the wooly mammoths.
Kaia: The Ice Age!
Me: Yes, and then you'll go back even further, to when dinosaurs roamed the earth.
Kaia: And men first walked on the moon!
Me: Now wait a minute, when men first walked on the moon I was just out of high school.
Kaia: Well, that WAS a long time ago.

Until the next post this is Herr Professor Doctor "Steve-asaurus" Mitchell signing off...

Transurethral resection of bladder tumor, the Flying Dutchman and other diversions

The short version is that the TURBT went well and I'm back at home. As expected, the canonical bladder problems are for the moment even worse than before, but I'm confident that in the long run things will improve. A brief report on the gory details, then on to more pleasant matters:

The procedure took a little over an hour, under general anesthesia. As I was coming out of it, the first thing I was dimly aware of hearing was "we're going to keep him overnight". A few moments later I was able to confirm this was not a hallucination. This was disappointing news until the surgeon came over and explained that the next morning they'd take out the catheter before sending me home, yay!
Anyway, the reason for the overnight is that the tumor had expanded somewhat and was "going down to the prostate", which doesn't mean the cancer is in the prostate but somehow pressing on it, which was adding to my bladder symptoms. In order to remove this part of the tumor they had to cut out a small piece of the prostate as well. Because of this additional trauma to the old system, they thought it best that I stay the night.

As always, however, it was an interesting experience. The most fun thing was that pre-op I met the surgeon's nurse practitioner Emily, who it turns out is good friends with Sarah (the oncologist's n.p.,
the opera enthusiast). And they had just seen the Flying Dutchman! It was Emily's first opera. Not the best choice of first opera, perhaps, but I just get such a kick out of the way Sarah is spreading the gospel of opera. As Chief Opera Consultant for the UW Urology Clinic, I told Emily to try La Traviata and/or the Magic Flute next season.  Wendy and I had planned to go the Dutchman, but upon discovering it is two and half hours long with no intermission, we changed plans. As I understand it, using a pee-bottle during the performance is frowned upon.

I also like to do experiments. I asked the surgery team to tell me right before they administered the anesthesia, just to see if afterward I would remember everything up to that moment, or if there would be a gap. No gap, it turns out.

My main complaint about the overnight is that they scheduled it on the one night the Mariners weren't playing. It would have been a perfect evening for Wendy (who as always is taking such good care of me!) and I to watch a game. The nerve! I proposed that they send me home last night, then I'd come back tonight, watch the game and we could call it even. They didn't go for it. Nor were the nurses receptive to my request that I go outside the ward for a while and do laps on stairs. I considered making a break for it with my bag-and-pole, then realized it wouldn't be right to gross out innocent bystanders. On the plus side, rarely in my life have I received so many compliments on my "excellent urine".

Around 5 last night my roommate was sent home, and I had a large room to myself. With the door closed it was relatively quiet and I was able to pace around and write notes for my algebraic topology class. As hospital stays go, it was a productive one.

The next step? Who knows. Better to conclude with two quotes from the munchkins, who always make me smile.

1. Biking to school last week, I was almost hit by a car that turned left across the Burke-Gilman trail right in front of me, despite the fact that I had a green light with a little bicycle picture in it, and the car had a "Left turn yield to pedestrians". The car went partly onto the sidewalk before bouncing off and driving away. I told the story to the assembled Mitchell-Brown clan---what a jerk! (at the time of the incident I used a much stronger expletive, but this version had to be suitable for all audiences). At which point Finley suggested in all seriousness: "Maybe he was blind."

2. Kevin was asking Kaia questions about our big wall map. "What's this?" he asks, pointing to a shaded area adjacent to the coast of the northeastern U.S. To the surprise of all Kaia answered correctly "the continental shelf". Upon seeing our surprise, she sat down with a sigh and said "I have no idea why I know so much."
(In fact both the kids learn many such interesting things from "The Magic School Bus".)

Who's driving the bus?

The surgeon on my "Care Team" (not to be confused with the oncologist, who is the person I normally see) told me in January that "we're all on the same bus, but you're the one driving it".
Well, I don't mind driving, and I appreciate the fact that they don't push things on me, but it would be helpful to have a better map. I'd even settle for a gps.

I met today with the oncologist to go over the results from last week's CT-scan. This time several lymph nodes have gotten bigger, but according to the doc it is not a very significant increase. More specifically, it is not enough of a change to warrant more chemo at this time. Incidentally, the fact that I've had almost no symptoms for 14 months after ending chemo is "very surprising"; he's never seen it before. Yay me!

However, before getting too full of myself, I must also report that the tumor in the bladder has grown significantly even since January. At that time I scheduled another TURBT (the roto-rooter removal procedure) in April. So now we're discussing several options, with no visible sense of urgency on the part of the Care Team and not much clear direction on where this bus is headin'. The options, which for now are to be regarded as mutually exclusive:

1. Go with the TURBT as planned. This is not quite as fun as a barrel of monkeys. It lies somewhere between a large sack of vampire bats and a closet full of rabid wolverines. Still, it is a minor operation.

2. Another round of chemo, meaning up to six 3-week cycles as before. The advantage here is that you get two for the price of one (lymph nodes + bladder), plus a 20 percent discount  on brain transplants. They keep telling me that I "tolerate chemo very well", but the thought of spending my summer with this makes those wolverines look darn appealing.

The next two are new, experimental treatments.

3. A different kind of chemical injection, that supposedly doesn't make you feel as bad as the chemo does. But as soon as he mentioned side-effects involving one's eyes, I stopped listening. Not on the table.

4. "Immunotherapy". As seen on TV! Call now while supply lasts! If you watch TV at all you've already seen many ads for this. Drives the doc nuts, and one can see why. As with option 3, results for bladder cancer are mixed and it's not even FDA approved yet. Plus one of my doc's patients almost died from it. This was the extreme case, but still...

The doc (=oncologist) and the surgeon are going to discuss the TURBT in the light of the new CT-scan. I'll write to them as well, laying out my goals and concerns more carefully.

One place this bus is definitely going is Italy, in September. We have a 14-night trip booked, including four nights each at Lago Maggiore (just north of Milan), in the Valle d'Aosta (perhaps Italy's least known region, up against the Alps along the French border), and Pinerolo, a little town in the wine country southwest of Torino. Abby and Oliver are coming for the Lago Maggiore and Valle d'Aosta part, yay!

The Pinerolo piece has already turned out to be big fun for me. I've been corresponding extensively (in Italian, obviously) with the wife (Barbara) of the couple (husband Gian Massimo) who owns the "romantic cottage" in which we're staying.
They have two kids, a boy (Tommasso) 16 and a girl (Agnese) 19, and all four have promised to talk Italian with me.
In fact we've exchanged so much about our respective families that if we don't quit we'll have nothing left to talk about in September! I especially got a kick out of the fact that Barbara is, like me, a big fan of Tiziano Terzani. She also found my Italian website and has been reading my essay "Un matematico si spiega" ("A mathematician explains himself").  Anyway it's so cool to know them in advance and to know that at least in Pinerolo I'm certain to have some good Italian conversation!

So you see, there's no way I'm missing the Italy trip. My goal as bus-driver is simply to get my bladder into good enough shape for a transatlantic flight and subsequent travel. (I could make some jokes about how to deal with it on the airplane, but I don't want to drive away the few readers I have left.) In any case, the original TURBT plan seems best. If at some point in the near future more chemo is indicated---well, too bad, it will just have to wait until October!

And last but not least, what beautiful weather we are (finally) having!

Brief update

Had the cystoscopy today. It's a very minor procedure taking less than ten minutes, and in fact
is quite interesting as you get to see for yourself what's going on in there. During the prep, the details of which need not concern us here, I had a nice conversation with the Russian-Ukrainian nurse about her paternal/maternal languages; she claims that Ukrainians can understand Russian but that it's harder for Russians to understand Ukrainian. Also Ukrainian does use the Cyrillic script, in case you were wondering. She came to the United States at 17 and has only a mild accent.

Linguistics aside, as expected there's a tumor at the base of the bladder (where it joins the urethra), but nothing like the weird stalactites that were growing before. So at some point I'll need another resection to remove the tumor, but there's no urgency they say. That's good because Winter quarter, which started yesterday, is going to be very busy. I can wait until Spring unless further problems arise.

I took the opportunity to ask this doctor (also a member of my "Care Team")  his view of survival rates for metastatic bladder cancer. He said that a complete cure via chemo is very rare, but that
there are many "long-term survivors". This is with periodic repetition of the chemo, but with the timing at the discretion of the patient. I really am very lucky to have such a Care Team working for me.

In any case, I feel great and better get back to work on my classes!