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I still have no symptoms whatsoever of the metastatic part of the disease, in particular the liver. What would the symptoms be? I finally got an answer to this: pain in the liver itself, nausea caused by the failure of the liver to eliminate toxins, and fatigue. The doc was at pains to emphasize, however, that if you get to the point of experiencing liver symptoms, ``it will be a short trip''. He doesn't like to use the word ``death'', but you get the drift. It's also true, statistically speaking, that regardless of treatment the cancer is likely to get me sooner or later. Yet I feel fine. It's surreal, to say the least. The suspense is killing me!
I come back to the basic philosophy, discussed elsewhere in this blog, that keeps me on an even keel:
1. I've had a wonderful, lucky life, and I'm still having it today. If I were to die soon, even tomorrow, I would have no cause for complaint. Well, okay, if I actually died tomorrow I'd be pretty pissed. But in the big scheme of things, to feel self-pity would be absurd.
2. There is no point whatever in worrying about it. I think of it this way: Suppose I was told I had x years to live; say x=1 just to illustrate. If I worry for a year, then turn out to be fine, I've wasted a year worrying. If I worry for a year, then die, I've wasted my last year worrying. It's a waste of time, and life, either way.
3. Death is a part of life, to be accepted and not feared. Expanding further on this point leads to mysticism/spirituality/philosophy of a personal nature. In previous posts I attempted to explain my views, to the extentthat they can be expressed in words at all. I'll leave it at that.
As to the new course of treatment, further ``platinum-based therapy'' (i.e. cisplatin) is not considered an option. As the oncologist (=''the doc'') explains it, there are three options, only the first of which is FDA approved: the atezolizumab immunotherapy (``atezo'', for short) discussed in an earlier post, the one involving the lovely term ``programmed death-cell ligands''. The other course is to join a research study, of which there are two ongoing. Research studies involve treatments that are not yet FDA approved, but this doesn't mean they can't be tried on volunteers. One of the research studies involves another form of chemotherapy; the other is a different immunotherapy. All treatments involve side-effects, ranging from the annoying to the very serious. Some immunotherapies inadvertently attack the pancreas and lead to diabetes, although apparently this hasn't happened with atezo. In the doc's personal experience with his patients, by far the most common side-effect of atezo is colitis, or to be more graphic, severe diarrhea---as in going ten times a day. There are further medications to counter it, but I can't imagine teaching, for example, under those conditions. It's also true that being dead would significantly impact my teaching. The image comes to mind of our hero as he ascends the scaffold to his execution, raising a clenched fist with the defiant cry: ``Death before diarrhea!'' A little gallows humor there.
This brings me to a digression. Contrary to what many of my nurses seem to think (the doc too, I suspect), all this joking around, flippant talk, and putting up a happy front, is not ``denial''. This really annoys me; I've never been in denial.
Maintaining a positive attitude is not denial. I'm well aware that the prognosis is grim. How grim? Well, let me quote a few points from the article on which the doc's current atezo protocol is based. If you want to see it yourself, it's in v. 386 of The Lancet, May 7, 2016, intitled ``Atezolizumab in patients with locally advanced and metastatic urothelial carcinoma who have progressed following treatment with platinum-based chemotherapy'', by the usual mob of authors found in medical journals.
Here ``progressed'' means ``gotten worse'' (the cancer has progressed, not the patient). So I'm exactly in the category of patients described.
In the introduction the authors remark: ``Platinum-based chemotherapy is the standard of care...[in bladder cancer]...and is associated with an overall survival of around 9-15 months. The prognosis for patients who relapse after platinum-based chemotherapy is poor, with median survival ranging from 5 to 7 months and no known life-prolonging treatments available. New approaches are needed to break this therapeutic stalemate.''
Atezo is such an approach, but it's not a miracle cure by a long shot. There were 315 subjects in this study, which took place in 2014, and by September 2015, 193 had died despite the atezo treatment. The percentages of ``complete response'' and ``partial response'' are low; moreover, it has to be born in mind that even ``complete response'' does not imply a cure. The statistics given for ``duration of response'' are not easy to decipher, but they aren't promising.The authors also note that ``...the presence of liver metastasis in patients resulted in a lower objective response rate than in patients with no liver metastases (5% vs. 19%)''.
So no, I'm not in denial. When I ask them about something like the time commitment required for a research study (it's fairly high), or whether the side-effects will impact my ability to work, maybe they think this is an odd question for someone whose life is at stake. But as the literature makes abundantly clear, there is a high probability that the cancer will get me anyway, with or without any given therapy, so why shouldn't I maximize the quality of whatever time remains?
On the other hand, I'm certainly not throwing in the towel! I need to do some more research; then I'll choose one of the treatment options. At the moment I'm leaning heavily toward trying the atezo, just because it's FDA approved and I know more about it. In any case, once I start treatment, I'll assume it will work and start planning a trip to Sardinia. But I swear, the next person to imply I'm ``in denial'' is going to be beaten to death with a used catheter.
Meanwhile, the surreal dream continues. I feel perfectly fine. I'm doing all the usual stuff I love to do. My two courses are especially fun this quarter. (If you see the movie ``Hidden Figures'', which I recommend, listen for an early mention by one of the stars of the ``Frenet frame''. I just lectured on this in differential geometry last week. It will be featured on one of my topology-geometry theme park rides, the Torsion Tube of Terror.) Our little grand-munchkins are as cute an interesting as ever. In my next post maybe I'll talk more about all the fun stuff. Life is beautiful!