I had to get up early yesterday so I couldn’t stay up late the night before and see the blood moon, but apparently the religinuts have declared a fairly routine astronomical event (the tetrad of blood moons) to be a sign of the return of their mythical figure. Since the range of their prediction (exactly when this return will happen) extends beyond my DTG I actually hope I’m wrong in my prediction so I can live long enough to see their prediction fail, as it has repeatedly over the past 2000 years.
What I should take from this is how stupid it is to make predictions on some “gut feel” or myth rather than real facts well fitted by an accurate model. So how about my own predictions (or really just feeling now) that isn’t based on facts. Perhaps in about 12 days I’ll have some new facts and perhaps can make a more informed prediction.
What nonsense am I talking about – well, it’s my own sense of doom that got started about 8 months ago and hasn’t completely left me, which is that I have a fatal disease myelodysplastic syndrome. First I got the oncologist’s diagnosis that seemed rather definitive and thus went through all the reactions when you hear you have cancer, but then I also got this, “just kidding”, wasn’t really a diagnosis after all. Oh great, what is the story? But that placebo reassurance from the oncologist worked, for a few months I was able to dismiss this.
But lately I’ve been seeing “signs” too. And most likely misreading them the way the religinuts are misreading a simple alignment of celestial bodies. But I can’t entirely dismiss the signs so naturally I’m back to a more pessimistic mood.
On my last visit, where the diagnosis of my condition was revised to a simple vitamin deficiency there was a lingering doubt I couldn’t shake. Due to the vagaries of scheduling at a medical office my oncologist made that declaration WITHOUT the latest blood tests. I subsequently received those results a week later and plotted them (just show one):
That’s right, the latest test had the lowest value ever for my platelets, a value of 133 where the bottom of the normal range is conventionally put at 130, IOW, I was almost at the very bottom of the normal range, but still above (there is a gap) the abnormal range. So not to worry, right?
I did put my worries (mostly) behind me, but after all, I’ve been following Nate Silver’s Bayesian approach for other statistical analysis so here my Bayesian prior (in anticipation of my next tests and oncologist visit) can’t be p=0.0, and in fact, a reasonable estimate would probably be p=0.3. As recently as a month ago I said that in my own mind (again uninformed, just feeling) was it was 50-50 whether the original MDS diagnosis was in fact still true.
Since there is no treatment (at least curative, there are supportive treatments to just keep you breathing) it’s entirely reasonable that an oncologist, who seems to have reached the conclusion that I had the “simmering” version, meaning a potential lifespan of 15 years (which isn’t much different than my statistical expectation from all causes, except that, at the moment, I’m in good shape (for my age) and don’t have any of those other causes). So it’s easy to speculate that the vitamin treatment is merely a placebo treatment to deal with the psychological (anxiety) side of cancer, not the medical side. IOW, is my oncologist just giving me feel-good happy talk?
But, OTOH, what reason, other than just unfounded worrying do I have to not accept this optimistic POV. That’s where the signs come in, which I readily admit: a) could be purely coincidental, and, b) may have other causes, but at the same time, when it’s possible I might have a disease it would also be stupid to ignore any signs. So what signs do I have?
- multiple times I have awoken with large patches of red spots, of varying sizes, on my forearms (mostly dissipated now). The largest of these spots look like routine blood blisters, except: a) they’re fat (no swelling), and, b) blood blisters usually result from friction on that spot and I don’t recall any friction, plus there are at least 30-50 spots, not just a single large one. This “symptom” alone changed my guestimate of probability of MDS up in the 50-50 range since I’ve never had anything like this before any other time in my life and this is clearly subcutaneous bleeding (presumably micro-break in vessels). I suspect all of us routinely get episodes (for some cause) of these micro-breaks, but with normal platelet levels they probably are quickly sealed before any blood, of noticeable quantity, can leak in to form the “blood blisters”.
- then yesterday I had a fairly routine dental visit which went slower than usual as after the actual drilling and filling the dentist needed to take the impression (in order to make the crown) and apparently (as he later told me) the bleeding wouldn’t stop. The dental procedure was small enough I’m sure there was only a tiny bit of gum tissue disruption which would usually have some bleeding that always in my past experience quickly stopped. But this time it didn’t. And in fact I need to return to vertical posture and wait a while before the bleeding finally stopped. Again, no big deal in itself, could be coincidence, but in the context of my last blood test showing my lowest ever platelet count it could also be a symptom.
- and finally, and more vaguely (since there are a ton of possible causes for this) I’ve been more tired of late (the early rising for dentist visit is the most likely cause of that) and of course that too is a typical symptom of low RBC, which in my last tests was not too bad, but still fairly low.
4.45 for latest test where 4.70 is the minimum value (for males) of the normal range, IOW, I was somewhat (but not severely) anemic, and anemia definitely impacts fatigue (but also shortness of breath, which I didn’t experience, so again ambiguous symptoms, but simultaneously all my exercise for weight loss has my cardiovascular efficiency near athletic levels so maybe that compensates).
So all this reading of tea leaves and entrails of pigeons could mean anything, as mystical signs usually do, but it could also be consistent with medical condition. So I can’t shake off my feeling of doom, that my MDS has progressed and the placebo treatments are just that, useless treatments to reassure me. Or I may be being my usual self and way too pessimistic, but given multiple blood tests with low counts and multiple visits to oncologist I can’t believe this is all my invention, just sick in my head, not in body.
So I decided to record all this (knowing Dr. Reader, you don’t like this set of posts since who wants to hear about dying) so to make a marker and perhaps in a couple of weeks all these “signs” will prove to be unfounded speculation.
That said, if the next set of blood tests does contain bad news what are my reactions:
- my estimate of life expectancy, as expressed in the title line of DTG, is very likely to be too pessimistic. Even if I have MDS it’s almost certainly not the most severe (fastest progression) version so estimating life expectancy under a year without a solid diagnosis is almost certainly too pessimistic. In fact, given the partial efficacy of supportive treatments with the information I have no (and its most pessimistic analysis) life expectancy is more likely to be a couple of years, not < 1.
- If it turns out the original diagnosis was correct and the more favorable diagnosis wrong (or possibly the placebo treatment by oncologist) then I’m going to be pissed that I may have missed my opportunity for some “fun” before the dying process starts. While supportive treatments for MDS might extend life for a year or two I’d definitely be sick where any kinds of risks (of injury, thus bleeding; of infection) should be avoided (unless, of course, I want to accelerate my demise). So while I might live for another few years my activity will be limited. IOW, no long European trip which we deferred.
If I have a fatal disease, other than the unpleasantness of the dying process itself, that doesn’t particularly bother me. I have this overwhelming negative view of my future anyway and MDS is not worst case outcome (although now that I know what the end game is I’m more unhappy about it now than I was when I first heard I could have it and die from it). My conventional end-game fear is that I will live a long time (as my parents) did and thus go broke (or face severe financial hardship) instead. With a short life expectancy I can dismiss that fear and in fact even do some wild and crazy treating myself to a few unaffordable (in the long life expectancy scenario) “treats”. But there may be a small window of opportunity for that depending exactly on what my end stage of this possible disease will be. But at least a couple of things that I thought I’d do (as my final “fun”) back last November have now come and gone and by the next window of opportunity for those it may be too late.
IOW, this part of the game is a pain. If I let myself think I’m dying and thus go on a spending spree to blow my retirement assets quickly then my traditional fear of living too long could happen. But if I don’t do the spending soon I may never get to and thus all that denial (of treats) in my past to attempt to have retirement assets may be a waste. Sheesh, risk management when it applies to me is very tricky, damned-if-I-do, damned-if-I-don’t. I’m simply not the kind of person who can live in the moment and do wild and stupid things that could have adverse consequences in the future. That’s why I would prefer my oncologist tell me the brutal truth, not try to make it easier for me with happy talk.
So I guess the next couple of weeks will be a period of anxiety, plus it’s unlikely that the next visit will remove all the uncertainty. I’m not going to obsess about this, but simultaneously I can’t just put it out of my mind. Oh bother.
btw: As with the religinuts I saw yet another sign. Partly due to the current Cosmos show I chose to get Carl Sagan’s book, Demon-Haunted World: Science as a Candle in the Dark. I’ll comment on this another time, but the “sign” that book provides me is that Sagan died of MDS (then called myelodisplasia) at age 62 and in this book he uses as an example, would you treat pernicious anemia with B12 injections or prayer. Of course, his earliest diagnosis (before MDS) would have been pernicious anemia (the most common symptom that brings patients to hematologist/oncologists), so was Carl sending me a sign? If I were a nutjob of course I’d interpret it that way, but even as a rational empiricist I find it hard (just as Carl is discussing in that book) to 100% dismiss myth and superstition as we humans are probably programmed by evolution to see signs and interpret them negatively as an adaptive response to potential threats (better safe than sorry). Reading that man’s words, now gone from this disease, did send a bit of chill into me, but at the same time, if I read all the rest of his words I see really use scientific thinking as my candle in the dark rather than submit to stupidity we humans (and those preachers seeing blood moons) share.