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[cancer|personal] Dancing the NIH boogie

As I said yesterday on my social media stream:

Things continue to unfold in good-but-complicated ways at NIH. I am not VagueBooking, but respecting confidentiality. Details when I can.

No, NIH has not found a cure for cancer behind the couch. Not that good, believe me. But in terms of access, process and treatment opportunities, this trip so far has been much more rewarding than even my brightest hopes for the process. As I said yesterday, I’m not yet prepared to discuss the details, because I’m not sure of the confidentiality boundaries of the various research groups I’m engaged with, but when I can, I will.

And I have to say, NIH’s internal processes are unlike anything I’ve ever encountered in healthcare. Of course, NIH is not a healthcare institution, it’s a research institution.

Back at it today.

[personal|tech] More on why I am done with LiveJournal

Yesterday, I got the world’s most useless LiveJournal error message.

2013-12-29 LiveJournal Error Message

I explained my views on it here.

[info]agent_mimi dug up a pretty convincing explanation, which they posted in comments, including links here and here

In response to another user’s complaint about this issue, LiveJournal’s Community Care team says:

The error you received was the correct error message for when this problem occurs. I am sorry it is not more descriptive, but that is by design in this particular case: we prefer legitimate users write in to us to receive information about the specific blocked site, rather than informing potential spammers exactly what the problem is (which also informs them how to get around it).

In other words, LiveJournal is now maintaining a secret spam blocking list, which forces a generic error message on any post that includes a link from a site on their secret list. A list which you can neither precheck nor get an informative error message on.

That means that when I post Link Salad, with a dozen, a score or more links in it, if one of them is on LiveJournal’s secret list, my only choices are to open a support ticket and eventually find out which link it is I cannot post, or go through deleting links one by one until I empirically discover the blocked link.

Meanwhile, as I learned yesterday, trying to repeatedly edit a post with a blocked link causes LiveJournal to go into some kind of time out mode, which makes the empirical method bloody useless.

Given that a quarter to a third of all my posts are link aggregations, this is an impossible problem for me. So, yeah, I’m done with LiveJournal. I have opened a support ticket to see if they have a different view of the problem since it was reported at the link above, but I’m not optimistic.

Still working on how, if there is any way possible, to find either a stable WP-LJ cross poster (every one I have ever used in the past has failed within 60 days due to LJ’s frequent unannounced and undocumented changes to APIs and server configurations) or a way to get my WordPress RSS feed into my [info]jaylake journal. But yeah, I don’t have time for this. Note there is an existing RSS feed under another handle, [info]feedjaylake, if this is useful to you.

[personal|tech] So done with LiveJournal

Once upon a time I blogged on my Web site with hand-coded HTML, back before there were blogs. Then I was on Speculations a while. The Blogspot and JournalScape. I moved to LiveJournal about ten years ago because that’s where a lot of the rest of the online SF/F community was going.

So I’ve been on LiveJournal a long time. I was so committed to the platform that I’m a permanent member. The version of my blog there is often in the top ten list of most-read LiveJournal accounts these days. (Which is more a comment on the decline of LiveJournal than on my actual popularity, I’m pretty sure.)

LiveJournal’s chronic problems with politically-motivated DDOS attacks from within the Russian hacking and intelligence communities have been annoying as heck. I’ve groused about it on a number of occasions, because I have neither the time nor the patience to spend forty-five minutes trying to perform what should be 90 seconds of posting activity. I’ve been convinced repeatedly that to abandon LiveJournal would be to give in to authoritarian cyberbullying.

Fair enough.

But this morning, when I tried to post Link Salad over there, I got this error message:

2013-12-29 LiveJournal Error Message

That is the world’s most useless error message. It tells me absolutely nothing about what is wrong.

When I tried to edit the entry, LiveJournal then went into some kind of lockout mode where I had to close the browser tab and start over. When I reposted the code from scratch in a new entry, I got the same damned error message, followed by the lockout.

My life is too short for this. Literally and figuratively. I’ve pretty much had it with LiveJournal weirdness. I hate to walk away from a presence where I have a large reading base and a long historical presence, but I simply can’t deal with this crap any more.

I am converting my LiveJournal presence to an RSS feed of my WordPress blog as soon as I can figure out how to manage that. (If someone reading here knows how to do that for me, I will gladly hand you the keys to the blog so you can do so.)

Been nice knowing you, LJ.

[personal|tech] No blogging today

In the fine new tradition of crisis du jour around here, my Twitter account was hacked overnight by a Russian feed of some kind. Been dealing with cleanup all morning, which has more than sucked up all my time budget for blogging, and still not done. Sorry, no blog today.

[personal|cancer] Friends and aftermaths

Yesterday, [info]scarlettina came over to visit Lisa Costello and me and [info]the_child. She made her mother’s brisket recipe, then [info]davidlevine and [info]kateyule joined us for the consumption thereof.

It was fun to see them, and fun to hang out, but the aftermath was tough.

As dinner was winding up, I came down with a very bad chill. No shakes, no fever, nothing else along the lines of the opening salvo of a cold or flu. Just a bone-deep chill, and incredible fatigue. I wound up having to go off to bed and lie down under the blankets, the electric one cranked up all the way to high. After about an hour or an hour and a half, as I was finally falling miserably asleep, the chill abated somewhat.

This is the third or fourth time I’ve had one of these “cold flashes” in the past month. I’m suspecting ever more strongly this is a precursor of my body’s functional breakdown in the end stages of my terminal cancer. They come on when I am tired, underfed, or otherwise stressed, but they are neither predictable nor obvious. At least not yet.

It scares me, and it wears me out hard.

[personal] The day moves too quickly

So far today, the funeral home meeting ran an hour overtime, one full blown crisis developed while I was in there, and another crisis is in the making right now. More blogging tomorrow, if I can get out from under all the falling rocks.

On the plus side, I now have a cremation contract.

[personal] Delayed blogging today

Yes, I am fine. (People always ask when I don’t blog.) Up hours after my bedtime with the late evening brain MRI, and thus slept late this morning.

Also, I have to pop out shortly to a funeral home meeting about my cremation and memorial contract.

Regular blogging service will resume later today, crises du jour permitting.

[personal|cancer] Another week

This week includes an appointment with my palliative care doctor, my usual weekly therapy appointment, an appointment at the funeral home to negotiate the contract for my final arrangements, two medical appointments for a family member which I shall be attending, another string of phone calls regarding our efforts to engage a clinical trial at NIH, significant travel planning for that trip, an effort to reconstruct my Quicken data due to a file error sometime back, plus all the usual business of life. Plus whatever crises du jour emanate as the week unfolds. Because there is always another fucking crisis.

Really, it doesn’t slow down much. I’m tired already, and this is only Monday morning.

[personal] Yesterday, today and tomorrow

Well, yesterday did not pass without incident, despite my hopes, but it ended well enough. Today we are all being low-key. Tomorrow, more funeral planning, so you can imagine how my head will be at that point.

Have a good rest-of-the-weekend your own self, assuming this is your weekend.

[cancer|personal] Trapped in a whirling morass of urgency, as my friends grow ever more distant

Last night I dreamt something long and complex, which is now lost to me. However, at the end of it, I was in a coffee house on a college campus somewhere. It was indoors, part of a student union building or some such. The students around me were of various ages, and one or two had small children with them.

I’d been drinking hot chocolate and reading. It came time to leave so I began to pack up. As I wound my scarf around my neck, my hat fell off. When I bent to pick up my hat, my gloves slipped out of my coat pocket. I couldn’t fit all my stuff into my pack. And so on.

Around me the coffee house was closing up. As people left, they kept dropping things too. I started trying to collect the other lost belongings in the hopes of returning them. The barista was pushing the tables to the back and stacking them so she could mop the floor. My table disappeared, and most of my stuff with it. I kept running around desperately trying to retrieve everything. I only succeeded in dropping more and more of what was in my arms, most of it not even mine.

It doesn’t take a psychology degree to work out the meaning of that. No more than most of my dreams. And this has been my week. If there is no significant crisis or disaster in my life today, it will be the first day since last Sunday for which that has been true. I have rushed from one problem to the next, solving few of them, and seeing most of them generate more problems like a runaway software process spawning malign threads.

Such is my life these days. This week has been an unusually pointed example. But in all seriousness, Lisa Costello estimated recently that based on the experience of the past few months, even on my best weeks I cannot get any three days in a row without something overwhelming happening.

This distraction factor spills over into everything. Ever since the cancelled trip to Europe, I have been unable to schedule social time with friends. The big stuff is more obvious — because my medical schedule keeps shifting so randomly, I cannot make commitments to out-of-town friends who need lead time to arrange work vacation days and procure plane tickets. Less stringently, I can’t even commit to Seattle friends who can be more flexible because they’re driving or taking the train or the Bolt Bus.

But even the local stuff gets killed. I’m going to Maryland at the end of the month to see about two different clinical trials at the National Institutes of Health. That means I won’t be here for my December 31st appointment with my palliative care doctor. They’re impossible to see on short notice, so I had to take a reschedule for Monday, December 16th. Exactly when I had a midday date with Jersey Girl in Portland. Her daily/weekly schedule and mine are so misaligned even normally that when I have to cancel with her, it can take us weeks to reschedule.

I can’t keep up with anything anymore, not with the absolute priority of maintaining what’s left of my life and health, and the resultant very erratic and frequent scheduling demands of that process. So my out of town friends slowly stop offering to come see me because I can never commit to a time. Most days I’m too rushed and fuddled to even be smart about keeping up emails or texts or phone calls whatever, so it’s harder and harder to maintain my relationships even remotely. My local friends get used to me cancelling and being unable to reschedule easily. My life narrows a bit more week by week, as it does in so many other ways.

My attention span degrades, my social availability degrades, and instead I am trapped in a whirling morass of urgency. I hate this.

Welcome to late stage cancer, Jay.