Follow-up to last post; decision made

There are several things I want to say in this follow-up to my previous post. First of all, I'm concerned I may have unduly upset some people with my funeral fantasy. That is the opposite of my intent. It's true that a big part of the purpose of this blog is purely selfish: It makes me feel much better to get these things out in the open. On the other hand, I really do believe that death after a full life is not some kind of tragedy. It is just a part of life and not to be feared. By making light of the situation, I am trying to convince family and friends to share this belief and not worry about me.

Second, the fatalistic tone of some of my blog posts should not be intrepreted as meaning that I'm giving up. Not at all. Indeed my problem is the opposite: Throughout the experience (chemo aside) I have consistently felt so good that without a dose of reality I could easily just ignore the diagnosis and proceed merrily along as though nothing was wrong. I need those dire statistics as a motivator to action. I publicize them in my blog because (a) as already mentioned, it is part of my way of dealing with it, and (b) it's important for other people to know. I don't want to write only a happy-go-lucky blog and then suddenly announce to my daughters ``oh, by the way, I have about three months to live''. I am doing my best to fight the cancer, but with a realistic attitude and without regarding death as some kind of injustice.

In fact another fantasy is that I am the first person to be totally cured by immunotherapy (see below for the decision). This would be very embarrassing, given all my dramatic posts about death. But I suppose I could live with the embarrassment.

Meanwhile, I'm happy, I'm enjoying life and just taking it day by day. You might be surprised to know what Wendy and I did on Wednesday evening, the day we got the scan report. We watched the last three episodes of season 13 of ER! Only two seasons to go...The next day I went to the Honors Luncheon, where a sophomore, junior, and senior from my differential geometry class were all getting awards as top students in their respective years. Another student from my mathematical reasoning class a year ago also got an award, so it was fun. A second top junior who I'd never met was sitting next to me. He's 17 and already taking graduate courses (I'm telling you, it's something in the air around here). Next year he'll be taking another grad course, called ``Manifolds'', which as it happens I will be teaching. At least a couple of these top undergrads will be in the course, which makes me all the more excited about teaching it. It's a year-long course, so obviously I must postpone croaking until at least next June.

After that I took my CRV to the dealer for new tires and a new battery. Hiking season is upon us, and it's no fun to be stuck at a trailhead with a dead battery (it's happened to me just once in my hiking life). However, I really am a total dork: for years I've just been hanging out at the nearby Starbucks doing math while they work on my car, although on sunny days I've wished there was a nice park nearby. Only now, and this is truly the epitome of dork-dom, did it occur to me to just look on my cell-phone map! There is a very nice little park just a block or two away. Never noticed it before. As any Seattle reader knows, Thursday was an absolutely beautiful day. After tiring of math, and with the caffeine wearing off, I just laid down on the grass looking up at the sky and the trees.

In spring quarter I restarted my Italian lessons with Elisabetta. As is our standard procedure now, I come in and tell her about and/or read aloud from my current novel (which Elisabetta recommended to me), ``The Charterhouse of Parma'' by Stendhal (pen-name of 19th century French author Marie-Henri Beyle). It's a good story and a lot of fun because it takes place in northern Italy with many familiar locations; of course for us it us ``La Certosa di Parma''. I use these lessons to deceive the cancer in the same way that the young woman of ``A thousand and one Arabian nights'' deceives the Sultan. After all, I can't stop before the end of the novel! I need to find another really long one, not War and Peace but maybe The Brothers Karamazov. Even the cancer will hold off to see how it ends.

Now, on to my third point: I've decided to go with the pembro. I do in fact have access to the New England Journal of Medicine (I knew this, but as I said, I'm a dork) and have now seen the entire article on the pembro study. Some readers have suggested that I've been overstating the probability of serious side-effects, and perhaps this is true. I do worry about it, but in the NEJM study the percentage of grade 3 or higher ``adverse events'' is 15 percent, which maybe is not so bad. The main reason for my decision, however, is simply that doing nothing does not seem like an acceptable option. I don't want to reach a point where it's too late to do anything---and this really could happen within a few months, conceivably---without having at least tried SOMETHING. The pembro appears to be the best available option. In the study it had about a 20 percent probability of ``objective response'', and in some cases the response lasts up to 12 months. Having liver metastases, however, lowers your odds (here's one of those grim statistics): according to the study, 145 out of 186 subjects with liver metastases are now dead. The bottom line is that to me, pembro is not the great advance that its proponents make it out to be (bear in mind the study is funded largely by the Merck corporation, which markets the drug). Nevertheless, it is recommended by my oncologist and really seems the only option. On the plus side, infusions are only once every three weeks.

Just making the decision is a big relief. Thanks for listening, and have a fabulous day!

Scan report: not good news...

I begin with my standard advisory: If you're squeamish about urinary symptoms, or about me talking about my own death, read no further.

It's been an interesting week. For the last five days I've had more or less continuous blood, and blood clots, coming out in the old urine. I assumed this meant the tumor was growing again in the bladder, but according to the onc, bleeding from a bladder tumor is ``like sunspots''; you can't really predict when it will happen and for how long. According to Monday's CT-scan, the tumor in the bladder has not really grown after all. In any case, there is no pain from it and indeed it doesn't affect me at all, other than being rather gross---for that last reason I thought I'd share it with y'all. Some of those clots, man, how did they make it through?

That's the good news. The bad news is that the cancer in the liver has increased significantly. The biggest lesion has gone from 4.2 by 3.7 cm to 6.6 by 6.2, and the other big one from 1.6 by 1.1 to 2.4 by 2.2. There are also ``multiple new satellite nodes'' surrounding the big lesion. For those who are rusty on the metric system, 6.6cm is on the order of two and a half inches. I saw the actual pictures too; relative to the size of the liver, it can no longer be called a small lesion. In addition, for the first time my blood analysis is showing some effects of the cancer on liver function. I still don't feel anything though; in fact if anything I've felt exceptionally good lately.

So I am at a critical point. If it keeps growing at that rate, the end could be much closer than I would like to believe. Certainly the oncologist's body language gave me a very negative impression. This brings me back to the immunotherapy decision. I suspect (and in at least one case know) that to many of my dear readers it probably seems an easy decision, under the circumstances. Wouldn't I immediately start the immunotherapy, as the best and possibly last hope?

But it's not that easy for me; far from it. In fact I fear, dread, and loathe the prospect of immunotherapy, for reasons I've discussed before. If the side-effects were temporary, I would have no hesitation in giving it a try. It's the thought of permanent side-effects, some of which really can be awful, that gives me pause. Needless to say, in this context ``permanent'' means up until the point the cancer gets me, an outcome which appears increasingly likely. That's just the point: as I see it, the choice is between (a) dying sooner but enjoying the time that remains more, and (b) living longer but with diarrhea, nausea, headaches, shortness of breath, skin rash, and in the end, in the worst case, dying from the treatment itself. There is always, of course, the third possibility of a miraculous cure, but absolutely no scientific reason to believe in it.

Today's discussion with the onc did nothing to alleviate these fears. On the contrary, he had some disconcerting news: A recent, randomized study of atezo showed that, statistically, it had no benefits at all! Great. Now he thinks I should try pembrolizumab, another checkpoint inhibitor that supposedly fared better in a recent trial. But what's to say that pembro won't go the same way as the atezo? And it has the same suite of gruesome side-effects, as far as I can tell. I've been looking around online, and haven't yet been able to access the actual article in the New England Journal of Medicine (maybe my wonderful sister Victoria can get it). But I've read the abstracts and various other blurbs. One proponent waxes enthusiastic about pembro because (in the study) patients getting pembro lived on average three months longer than patients getting second-line chemo. Well, excuse me if I don't get too excited about that. First of all the relevant statistic would be average survival time for pembro versus no therapy at all, and in any case three months is not a figure I'm going to jump up and down about---assuming I'm even able to do so with pembro attacking my lungs.

By the way, the trade name of pembro is ``Keytruda'', manufactured by the Merck corporation. Even on the Merck site, the list of possible side-effects is discouraging to say the least. It's true that some of them are rare. Others are common. And all this for only a twenty percent chance (according to the study) of getting even a temporary benefit. I honestly don't know what I'm going to do.

There is a daydream I have about my own death. It may seem silly, or pretentious, or both, but at this point I don't really care. It's a comforting daydream for me, oddly enough. It has elements of Lou Gehrig's famous speech, of the scene in ``Tom Sawyer'' where Tom and Huck attend their own funeral, and of a low-budget off-Broadway version of the Last Supper.

It's a large dinner gathering. Friends and family are there. The occasion for the dinner is unclear, but it falls on me to make a speech:

``I want to take this opportunity to invite you all to my upcoming funeral, date TBA. I won't be there, of course, but there are a few things I'd really like you to do: Wear bright, colorful clothes. Play upbeat, happy music. Laugh, a lot. Have an Immortal IPA, in remembrance of me.

``You see, my death is not an occasion to mourn. I've been incredibly lucky in life from day one, from the family I was born into, to my wonderful wife and children and grandchildren, to my friends, my work, my health. Yes, even my health. Think about it: I've never so much as sprained an ankle, let alone broken a bone. I fell 150 feet in Yosemite, and came out of it with just a concussion and a broken nose. I had a mild form of epilepsy as a child, but even that went away; for 65 years I've never had a serious illness. Even with cancer I'm lucky: a world-class medical center is just a short, beautiful walk from my office.

``Hell, during the Vietnam war, my draft lottery number was something like 343, meaning there was virtually zero chance I would be drafted. I've led a charmed life really. If I believed in God, and had a chance to chat with him/her/it, I think I'd start by saying, ``Dude, thanks so much for a great life! It's been a wonderful run.'' After that I might get into the question of why I should be so lucky and others not. Things could go downhill and I could end up in the Bad Place. But I don't believe in God, so I won't worry about that.

``By the way, with regard to my ashes: please dispose of them in an environmentally responsible manner. I would be honored if you went to visit one of my favorite mountain haunts, but I sure as heck don't want you carting a box of ashes around and freaking out the marmots. Just take your thoughts, and mine, with you. And be happy.

``So good night, I love you all, and remember this: If I catch anyone at my funeral wearing somber clothes or playing gloomy music, I'm going to be really pissed off.''

Back to reality: The sun is back, at last, in Seattle. Kaia's butterflies have emerged from their cocoons, and have been set free. It's a beautiful world.