Wednesday, May 24, 2017

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.

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