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!

Update

The latest news isn't as good as I'd hoped, but it's not so bad. I don't worry about it--what never? No never? What never? Well, hardly ever! (A little ditty from Gilbert and Sullivan's HMS Pinafore). Okay, so maybe a little, which is why I'm writing more in the blog. It's therapeutic. I do however wish to repeat my standard disclaimer that there is nothing special about my little problems; millions of people have cancer, or worse.

The good news is that the lymph nodes are stable. The cancer is still there, apparently, but nothing has grown. If it progresses to bones, liver, lungs or other organs, you're pretty much hosed, so it's nice to know it's been held in check nodewise.
On the other hand, just before Thanksgiving I experienced a recurrence of the canonical symptoms (blood in the urine, if you must know) that led to the cancer diagnosis in the first place. The symptoms were identical to April 2014, and were pretty obviously an indication of the cancer starting up again in the bladder. This wasn't a surprise, since we knew that the chemo had not completely eliminated it. I reported it to the doc with the suggestion we just wait for the next CT scan, already scheduled the following week.
According to him there is no question that the blood is from the cancer; the CT scan, although not definitive, also indicated
a resurgence. A urine test revealed cells suspected to be cancerous, although the people who do these tests don't like to commit to the diagnosis without an actual biopsy (as opposed to just looking at cells that are floating around loose). Since a biopsy requires
the dreaded transurethral resection (which I had twice last year), before doing that they're just going to take a look via cystoscopy, a lovely procedure done in the office. It isn't so bad, except that it screws up bladder control for a period of time, which is the last thing I need these days. The procedure is interesting though, as I'll get to see for myself what's going on in there. This will happen the first week of January (on the second day of classes, wonderful!).
To sum up, it's clear the cancer has started growing again; the purpose of the cytoscopy is to determine the extent of it.

At my clinic visit following the CT-scan, I was a bit surprised that I only saw Sarah, the nurse practitioner, and not the oncologist.
It's always fun to see Sarah, because of her new-found and boundless enthusiasm for opera: I just LOVED Ariadne auf Naxos!
I just LOVED Nabucco! I just LOVED The Pearl Fishers! Next up is the Marriage of Figaro, and I'm certain Sarah will just LOVE it. She's great. However, after we left I realized that I really wanted to talk to The Man himself, the oncologist. I met with him this morning, partly to better understand the reasons for the cystoscopy but mainly to get a better understanding of the big picture.

We've discussed it before, but, understandably, it takes some prodding to get a direct, uncensored reply. I have to keep reminding him that it really, truly, doesn't bother me in the least to talk about death and whatever gruesome events might preceed it. Moroever, from a purely intellectual point of view I'm just curious: What is the typical progression? What are some typical outcomes? And so on.
I've asked these questions before, obviously, but now that I'm a year and a half into it I wanted to see what he'd say. It's pretty much what he said before: About ten percent of patients are actually ``cured'' by chemotherapy, and he was (is?) hopeful I'm in that 10 percent. That would be nice, although one round of chemo doesn't seem to have done it. At the opposite extreme, bladder cancer being very aggressive, some patients die within 3 months of diagnosis. Fine, I'm well past that bar. For patients with metastatic cancer (which I have), the median survival rate is two years. Now, it would be soooooooo embarassing not to beat the median. I would be mortified! I fully intend to crush that mark. (Seahawks fans will be familiar with ``Beast Mode'', which I can assure you is nothing compared to ``Mad Dog Mode''. In fact with all the injuries the Seahawks are getting so desperate for running backs that I recently got a call from Pete Carroll asking me to fill in. Unfortunately, due to teaching obligations I won't be available.) At any rate, the oncologist and I share the view that there's really nothing to do but take it one step at a time.
It makes it a bit tricky to plan a trip to Italy, say, with the possibility of another round of chemo looming out there in the future. His suggestion was ``travel insurance''. That might sound harsh, but actually it's a great idea and fits well with my ongoing philosophy, i.e. one should never worry about this kind of thing, but one can't completely ignore it either.

So that's where I am. I don't worry about any of it, including death, because none of that has any relevance to today. I'm here now, I feel great, and it's a wonderful life! (Sorry...I couldn't resist that last one, seasonally speaking...and besides, it IS a wonderful life!)

CT Report

Well, this is getting pretty routine and can be filed in the "no news is good news" department. Had another CT a couple of weeks ago, saw the oncologist today and there is no change since the last one. Which means that in the six months since my chemo ended, nothing has changed and really the doc could've just phoned it in. At any rate it is clear that the cancer doesn't dare to show its face again!
Nevertheless he wants another CT in 3 months. But I may just stop reporting these and you can assume that no news is good news!!