Wednesday, March 30, 2016

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!

1 comment:

  1. Daddy,

    Thank you for sharing both the good and the bad. It sounds like the TURBT will be a good way to go. While the growing bladder tumor is rather grim and I am very sorry to hear about it, my dominant feeling at the moment is inspiration at your relentless focus on the myriad of things in life that are the opposite of grim. For example, Italy is sure to be a rockin' good time! I'm glad you have such an amazing experience to look forward to.