Thursday, July 28, 2016

Double off the left-field wall scores nine

That might seem impossible, but I'm playing by the Finley rules. There could be nine bases, for example, plus home. Or the bases could be loaded with three runners to a base. With the Finley rules, all things are possible. The final score was Stevie Boy 9, Chemo 0. The chemo had no chance of hitting my two out pitches: the quantum slider, which exploits wave-particle duality and splits into two balls halfway to the plate, and the Heisenberg knuckleball, which is unhittable as batters cannot determine the position of the ball and its velocity simultaneously. In short, I realized my plan of riding my bike ten and a half miles to the Med Center for chemo, then riding back. Yeah! Fist pump etc. understood here.

I've heard of a person on chemo running a marathon, compared with which my little bike ride is like a five-minute shuffleboard game played from lawn chairs. And I must confess there was no great triumph over adversity; I felt great and there was nothing to overcome. But you have to imagine what a psychological boost it is to carry this through. Exercise is good; pushing it harder is even better. It helps the entire system, in many ways. So I'm determined to to up the ante compared to the last round. It gets worse as you get to later cycles, due to the cumulative effect and vanishing blood cells. Still, my goal is to push the limits.

The only really bad effect so far is the Picc, which has left my skin looking like crazed wombats have gnawed on it. Today we
reached a consensus: The Picc must go, and it has. Hooray! The next two infusions will be done by direct intravenous injection, which as you might recall from earlier posts has its own problems, but the Picc is impossible. Then after returning from Italy, they will put in a ``chest port'', pretty much what it sounds like, that goes under the skin. The oncologist counseled against this option last time, but Susan the NP thinks it's the best for me. If he okays it (he's not around at the moment), that's what we'll do.

After they pulled the Picc and wrapped the arm in temporary bandages, both nurses were aghast at my plan to ride home in 85+ degree heat, because of sweating (it's a yeast infection and needs to be kept dry). I get it, but not completing the ride would be much worse. It's all a mind game, you know. ``Can you at least ride really slow?'' Oh yeah, I can do slow.

The pre-Italy plan has now been finalized, and it's not what I wanted but appears to be the only option. My CT-scan and oncologist consult will take place the day before we fly (for best scan results they like to wait two and a half weeks after the last infusion). They assure me this can be done with a ``stat read'' i.e. they will have the radiologist look at it immediately. So why not just do it when we get back? Well, if the cancer has progressed I could be advised to cancel the trip and continue chemo. At least I got a straight answer on this out of Susan. Canceling just before we fly...wow, that would be grim. I'm going to assume this won't happen. But at the same time, I have to be psychologically prepared; if things really looked that bad I'd probably go with the doc's recommendation. The interesting data point is that is that if I go to Italy, it means just a one month gap in treatment. So they seem to be pretty serious about the aggressive nature of this kind of cancer. That said, I'll return to the optimist view: Andiamo in Italia!
In general the chemo has gone really well. The cisplatin week, week one, oscillated between feeling pretty good and feeling like merda. But in the down periods, at home, one can just lie down for a while and wait it out. Appetite has been very good, thanks to the exercise. I've been taking in more water than the Titanic. Shipped my two students off to a conference in Vancouver, so I've got a couple of weeks do hang out at home and work uninterrupted on math. Not a bad place to work!

Well, now I really have hit the wall. Neurons fading, synapses lapsing into dream mode...Buona notte a tutti!

Friday, July 22, 2016

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.






Tuesday, July 19, 2016

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!

Friday, July 15, 2016

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."

Wednesday, July 13, 2016

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...