I realized I never posted the interview on here! Here’s me talking to Declan Meehan from EastCoast FM about life, love and digital legacy. Very general interview, but wow it went fast!
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?
While at work today, I got a very welcome text:
“Brain scan negative.”
This is excellent news. No, it doesn’t mean that my mother doesn’t have a brain (far from it, homie), it means that there is no evidence of cancer in her brain, so the lung cancer hasn’t spread up there.
Big exhale.
We’re still waiting on tests from the genetics folks, to find out which exact strain of cancer she has. Once that info is back, a full treatment plan is going to be created. We’re hoping that she has one specific one, that is managed by just a single tablet each day. But truly, I’ll take any that can be squashed into oblivion.
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!
The boys and I returned last week from a lovely vacation to Hawaii, spending Christmas and New Year’s with my father and stepmother. P and Eoin had a great time, which included going to see the erupting volcano with Kuku (it’s what they call my Dad…Tutu is a Hawaiian phrase for grandmother, and we went with Kuku for grandfather. I called my grandfather that) and P learning to surf on Waikiki.
Unfortunately, on our way back from Hawaii there was some not-so-happy news. My mother had a cough for about a month, trying to beat it with over the counter remedies and antibiotics. She went to a doc to get pneumonia ruled out. They didn’t see pneumonia on the x-ray, but there was a mass on her lung. A CAT scan indicated that it was not a good type of mass, and they went on to have a PET scan done. This told the docs that it was a form of cancer, and the docs decided to operate and remove my mother’s right lung (along with one of her ribs. I’ve been trying for 2 days to come up with an Adam and Eve joke and just can’t. Where’s B when you need him?). The cancer has spread some to her right lymph nodes, but the docs are feeling confident that chemo or even a daily pill will be able to take care of that, once she’s recovered enough to get the next step of treatment.
They are looking around at cancer centers in the US, and other types of drugs that are out there. Technically, she’s been classified as Stage 3A.
Everyone is asking how she, and I, are doing. From what I can tell, she’s having good days and bad days, just as everyone does. No, I haven’t talked to her on the phone; I did talk to my stepfather, who sounded like he was holding up okay. I remember the amount of phone calls and email and texts the first few days, and how overwhelming it was. So I’m doing what I know I can to help…posting on the blog. 🙂 To lighten the load, just as we did with B.
Updates will be coming as we get them. Thank you for all the well-wishes. I know she’ll be happy to know there are people all over the world pulling for her.
The boys and I have just returned from a lovely few days at our friends Martin and Miriam’s house, in Louisburgh in Mayo. We had a grand day yesterday, sitting on Oldhead beach, the boys making sandcastles and big holes and whooping in the cold water. It was desperately needed, which I hadn’t realized. We were only there for one full day, but it was sunny the whole day, and warm (for Ireland).
Thanks to M&M, and to Xian and Michael, who shared the drive out with us. Once again, our lovely friends are helping to keep us supported.
School starts in 2 weeks! Ohmigosh.
And can we all say happy birthday to B’s little bro, Derry? Today’s his /mumbledy birthday!!
I read an article today, about some researchers who have had promising results by using HIV and genetically modified white blood cells to destroy cancer blasts. This is in treating Chronic Lymphoblastic Leukemia (CLL)…B had Acute Myeloid Leukemia (AML), but I could hope that at some point, this would work for all leuks.
And then I got angry. Why now, 3 weeks later? Why not last year? Or why didn’t his body fight it harder, to give him a little bit longer? To at least see Eoin start school?
No one has answers to these, which makes it all so much harder.
It’s actually been 9 days. I can’t believe time is still moving. It shouldn’t be.
I wanted to thank everyone for, well, everything, really. The outpouring of love and caring has really surprised me, pleasantly. Thank you is too little a phrase to show the appreciation for what all of you have been doing. The amounts of email, invitations, food, wine, taking care of the boys, coming to the service and the afters, mentions in the meeja, all of it. I knew how amazing B was, I just didn’t know that everyone else saw it too!
So from our family to all of you, thank you. You’ve all shown that you’re really part of our family as well.
Speech is such a funny word. I like tribute better.
Brendan’s brother Derry (Diarmuid) was up first, followed by Christian and then Diarmaid (please follow along in your booklets).
B built us a MythTV box, and did a lot of the documenting here. Today P turned on the tv and found that the recording files were there, but were empty. Now, I’ve only had one cup of tea, so I’m not firing on all cylinders, but something at the back of my mind said “I bet the HD is full.” And it was. Phew. /deletedeletedelete
I have a lot of things I have to learn. I know that B added some channels to the Myth setup a couple weeks ago, and it took him something like 2 hours. There is going to be a day when I shut down the shuttlecraft (our Myth box), but I want to prolong that as long as possible. We’ve used the Myth interface for so long, it would be strange to move to something else.
Maybe I can teach P Unix, and he can play with MythBuntu?
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