zen.org Communal Weblog

There are many types of digital legacies, I’m learning.  There are the ones that people know B for best: Zen and the Art of the Internet, the CuD archivist, EFF supporter, gcc/c++ programmer. But then there’s a few layers under that as well, like his Google+, LinkedIn, Twitter, Facebook, and this site and blog.  Those are the more public legacies, the more enduring ones because of sites like Archive.org.

But what of his personal digital legacy? What of his multiple home computers and the information (or lack of) on them?  Password files, financial files, stories and notes, his vast email archives?

What do you do when you are next of kin to a geek?

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Mom is at their friend’s house, resting and recuperating. She sounds good on the phone, slightly breathless, but apparently her lungs were crazygood, and her one lung has the function of 2 mortal lungs.

Yesterday they were hoping for an MRI, to see if it’s metastasized into her brain, but the place they were going to go doesn’t do MRIs til someone is 6 weeks post-surgery. So hopefully Monday, back at the hospital, I believe.

She, apparently, has the lung cancer that women non-smokers get. Iknorite? You just can’t freaking win, as one of my friends said. We are still waiting on tests to confirm that, but I think that’s what the docs believe.

Right now, they’re staying in Ft Lauderdale, but if anyone has any amazing people they should talk to, please comment below!

My dear friends Michael and Christian plus Walter and Mary helped put together the booklet for B’s service.  You can look at it here.  I hope you can see the joy that his life brought us.

Planning on getting the speeches once they are done, typing them up, and uploading so everyone can share in the celebration of…so so much.  You all have said it in the comments over the past week, using better words than I ever could.

My beautiful, smart, funny, geeky, blue-eyed, bearded, amazing husband died last night with me and two of his aunts holding him.

Forgive me, since  I’m really tired so there might be a few errors.  Actually, is that now a common theme?

B had a rough day today.  He’s tired: physically and mentally.  He doesn’t want to be there, of course. But his vision is getting a bit worse, and that’s getting him down.  That’s part of the fun of today…we got to ride in an ambulance!

But wait!, I hear you say.  Weren’t you already in a hospital?  One of the largest in Dublin?  YES! I exclaim!  BUT there aren’t eye docs in Vincent’s on weekends.  Let me start over…

I walked into the room this afternoon at around 2.  I said “Hi sweetie, how was last night?”  He said “It really wasn’t that great.”  I walked out to the nurses to talk to them, since talking too much tires him.  Basically, his vision is worse, and since there are no eye docs around, they got the reg to see him (that’s the equivalent of a resident, if I understand it right).  Now, this all could have been done before I got there, but B didn’t want to have them put drops in his eyes, in case (steel yourself now)…he couldn’t see me when I got there.

/blows nose in tissue.

At that point I said, Get the freaking drops already!  They put in what B and I call the Mr Burns drops: B had to get them for his laser surgery years ago, and they dilate your pupils so the docs can see your eyes really well.  He totally looked just like this.

The reg checked out his eyes, and basically said that he thought that there was some bleeding or something, but he wasn’t an eye doc.  So they talked to the SHO (senior house officer, IIRC?) who agreed on them calling an ambulance to transport B to the Royal Victoria Eye and Ear Hospital, or what everyone here calls the Eye and Ear, where they would see him in the A&E department right away.

So, a little while later, after B had his dinner so I think it was around 5, the ambulance men came in and off we went to the other hosp.  Irish ambulances are kewl, btw.  They have these hydraulic lifts, and proper seats for passengers.  It was me, sitting near B’s head on the stretcher, Nurse D behind me, and the ambulance man riding backwards against the front of the ambulance.

We get to the eye and ear, and get seen by the intake nurse, B.  She was a bit scary and intimidating (you should have seen Nurse D’s eyebrows go up, was hilarious) until her peppering B with questions made him visibly upset.  She chilled then, and was a bit gentler.  She checked his basic vision, and then we went in to see the eye doc, F.  Who looked at his eyes for a few minutes, and basically said that he is hemorrhaging in his retinas due to the low platelets in his blood (true, since he got two bags of sticky platelets this afternoon while I was there).  They aren’t sure if it’s connected to the leukemia or the chemo, but it would be one of them.  And there is no guarantee that it will clear up, or that it won’t.  They just don’t know, and won’t until the leukemia goes away.

So we get bundled up, wait a bit in another room, and the ambulance men come back (“Sorry there, we were on the Naas Road with a van versus car…guy didn’t want us to cut the car to get him out.  Twas new, he said!”) and off we go back to Vincents.  B was absolutely wrecked at this point.  I’d say it only took about an hour and a half, but he was sitting up most of the time, which he hasn’t done a lot of in the past few days.  Plus talking, it was a bit chilly, the ambulance really didn’t have good shock absorbers and the stretcher looked kinda uncomfortable.  But hey, this way he was so happy to be back in his room in Vincents, he was looking forward to it!

We got back, he got his next double dose of chemo (it was Kool Aid in a syringe night again, as well as the drip in the purple bag) and was almost asleep at the end of that.  He still needed another 2 bags of blood tonight, but that happened, I guess, after I left.  I needed to meet up with B’s Aunt Mary and Sheelah, who had the boys for the afternoon.

So this is where he is…he’s not able to read or type.  The laptop came home with me…and those of us who know geeks know that that’s possibly the saddest part of all of this.  I’m skimming his email each day and filling him in on things, but any responses you get will be from me.  He’s too tired to dictate too much to me, so the writing will be only from me from now on.

The boys are doing well, so far. P likes that he can pretty much go to whoever’s house he wants. Eoin’s just hanging out and going with the flow.

As for me?  Holding it all together, I guess.  This evening  was the beginning of day 5 of chemo, so it’s been 6 days from diagnosis.  We’re halfway through the first round of chemo.  I can’t really remember this week, and I can’t really imagine the next week.  Our lovely friends and family are keeping us going, and there aren’t words enough to express our thanks.  We’re going to need those good vibes next week, when the chemo is done, and we start with the wbc regeneration.

Shoutouts today to the awesome Nurse D, who helped us laugh through some of this; to Mary for the minestrone; Dolores for being there; and the awesome Aunties who are propping me up so well.  And many many congrats to Magda’s brother and sister in law, who had their second son this morning at 6!  Whoo hoo!  The world needs more wonderful people like them!

Just got the new numbers from the team, things are looking good…his white blood cells are now at 18.6. This is getting closer to “normal”, tho we’re gonna go past normal and wipe ’em all out. His red blood cells are at 5.5, which is quite low and effecting him some. He’s really tired and they don’t want him to get out of bed anymore for any reason, and they have him on the nose oxygen thingie to get his blood oxygen up. Both of which are normal, from what I can tell. He’s to get a transfusion later today of some red blood cells, once his fever goes down some more. He didn’t manage much lunch, but tried valiantly. I was here for his next dose of Daunorubicin, in two giant syringes that go into the central line. He’s now fallen back asleep for a bit, they are about to give him more antibiotics for his fever, as they can’t give him the transfusion until the fever is down some.

He also mentioned that his vision is a bit funny (don’t worry, he told the docs). His skin is very pale, slightly yellowy. I’m glad he’s sleeping, cause the more he sleeps, the faster it will all go for him.

Yesterday he was pleased to find out Ruairi Quinn is minister for education, he’s looking forward to Labour keeping their promise of recognizing Educate Together as a second level patron.

Today has been pretty easy-going, compared to the days before it. I woke up at 6am having to pee a few gallons, and by the time I got back to bed I found I was having trouble breathing. It felt just like an asthma attack when I was little.

I told the nurse, who got the on-call doctor to come and check me out. I could inhale, but exhaling was really hard. He listened to my chest, checked my temperature and blood pressure, did an EKG (with little sticky metal jobbies to do the reads, all of which yank out chest hair incredibly well), and in the end said everything else seemed okay. It’s traditionally one of the ways anxiety manifests itself when someone’s mind is trying to handle traumatic information. Another time in the day when I had to go to the bathroom, I found my heart absolutely racing when I got back to my bed. Same deal. All expected, and they said I shouldn’t try too hard to chill out—just let everything take its natural course.

I slept reasonably well through the night, even without the sleeping pill which was offered (“refused” was the nurse’s way of phrasing it, making it likely I’ll accept it tonight). However I had a bit of a fever, which made me overheat and sweat. After that breathing stuff, my energy was absolutely gone despite all the sleep I thought I’d saved up. I was able to fall back to sleep a little, but had to go slowly.

Patrick was able to come visit today! Elana had done an amazing job of talking to him yesterday about what was going on, and he showed that he’d been processing some of the information, and didn’t look upset. They were here for about 45 minutes, in which he and I got to talk about all sorts of things. I showed him the view out of the window I’m near in my room, which is a really pretty view of the Dublin Bay and Howth.

He asked me what the thing patched on my neck was. I lifted my shirt and explained why the central line was there. He didn’t look scared, which was a great relief. He then noticed the back of both of my hands were riddled with little red marks where they’d been trying to draw blood before the central line went in. I told him they had to do it to try to get blood from me. He thought for a second, then announced, “That’s just MEAN! Why can’t they be more careful?!”

The time flew by, but it felt wonderful to get to see him. Might be able to see Eoin, age 4, tomorrow. Both of the boys made be get-well cards on big sheets of paper, which are now taped up onto the wall by my bed next to a picture of them from when I was in Gorey last year for an Educate Together Board meeting and E brought the boys down to pick me up.

The Akismet plugin for our wordpress blog here on zen.org has stopped—get ready for it—a total of 537,920 spam comments. In two years. That’s half a million.

The peak was in June 2008 when more than 71 thousand attempts were made.

My Sony laptop (VGN-TZ398U aka PCG-4P2) has the horrible habit of forgetting about its wireless device when I put it to sleep/standby. When it wakes back up, I have to go through crazy steps to make it work again. The laptop is running Vista Service Pack 2, though Vista as shipped on the laptop had the same problem.

A while ago I created a batch file which I could right-click an “Run as administrator” to make the device magically work again:

rem Restart the wireless interface, needed on vaio vgn-tz398u after
rem sleeping. Run as admin.
rem
rem cf http://www.wlanbook.com/enable-disable-wireless-card-command-line/ for an alternative using DevCon.
netsh interface set interface "Wireless Network Connection" disabled
netsh interface set interface "Wireless Network Connection" enabled


But this has been a royal pain. Then I found the answer in a post “How do I get a Vista laptop over its wireless quirk“:

In your Device Manager, open up your network card and go to the Power Management tab. Uncheck (what should be) the first option, “Allow the computer to turn this device off to save power.” This will stop the connection from being dropped whenever the computer goes to sleep/standby. Many wireless cards don’t let you do this, but most, if not all, wired NICs can.

My thanks to the user niles on that site who had the final real fix for me. It’s working like a charm!

I have some documents which have to get to the US as early as possible next week. FedEx in Ireland is really picky to begin with, and on a Saturday even has their office closed—and their phoneline hangs up on you if you even try to listen to their office hours. At best, we’d be driving up to Dublin Airport to give the package to them to fly out. Skip FedEx and try DHL — no answer. Gah. This is after I went to An Post in Dún Laoghaire at 3:45pm to try to use their courier service to send it out. The lady said their guy had left at 4pm (it wasn’t even 4), and the best they could do is delivery in 4-5 business days. WEAK.

Unless we could figure out something else, a hunk of the weekend was going to be spent scanning in about 150 pages and then

Our friend Helen, who works in TV/film, suggested a courier company called Wells Cargo (a fun name if you’re from California). I emailed on Saturday morning, and less than five minutes after I’d sent my mail, my mobile phone rang. There was your man asking for some details, and able to have someone collect before 8am on Monday—for delivery to our accountant in Florida on Tuesday. And I can pay them with PayPal.

Very, very impressive. I’ve every expectation their guy will appear on Monday morning; apparently this company’s even in Elana’s rolodex from when she worked in TV production in Los Angeles.

We’re definitely gonna use them again. They so saved my ass I figure a plug is in order. 🙂