zen.org Communal Weblog

July 28, 2011

One week

Filed under: — elana @ 11:52 IST

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.

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July 26, 2011

VAX Assembly

Filed under: — Sven @ 03:56 IST

I walked into the Kirkbride Widener CS lab one day as a second semester freshman, nej, maybe first semester sophomore. Brendan was staring at a VT101 with 4 or 5 VAX/VMS manuals, 4 inch binders each, laying open around him.  With a mean, sarcastic voice he looked up and said something like “history majors have nothing on me”.  Before then I had set myself to try to survive college, as my grades where less then great.

It took a few day, maybe a few weeks, but something clicked. College isn’t meant to be survived.  I remember teaching myself Applesoft Basic on the Apple ][+ as a preteen.  On the Apple ][+ Beagle Bros kept me giggling and kept the docs fun to read.  With help of Brendan, el at, I made it fun.  It all started with a stack of VAX assembly language manuals piled around Mr. Kehoe.  It ended with me getting a most improved student award, then watching him leave Widener without his deserved degree.

 

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July 25, 2011

The Speeches

Filed under: — elana @ 15:11 IST

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).

(more…)

MythTV for beginners

Filed under: — elana @ 07:15 IST

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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July 23, 2011

Celebration

Filed under: — elana @ 14:00 IST

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.

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July 21, 2011

Details

Filed under: — elana @ 08:57 IST

From rip.ie:

Removal on Saturday from Quinn’s of Glasthule to Mount Jerome Crematorium for service at 2pm. No flowers, please. Donations, if desired, to Educate Together.

 

I can’t thank everyone enough for all the kind words, thoughts, prayers, and practical stuff over the past few days.  I’m having problems with words, but thank you all.

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July 20, 2011

Bigger Than His Body

Filed under: — elana @ 11:45 IST

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

 

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July 19, 2011

Nothing funny here

Filed under: — elana @ 00:41 IST

last night, B was complaining of a headache. He got sick a few times, and when I went back into our room to check on him, something had changed. I don’t know if it was his eyes, or his mouth, but something was wrong. He tried to sit up, but couldn’t use his left arm. I asked him to squeeze my hand, and he couldn’t. I grabbed the phone and dialed 999, and, for the first time in my life, ordered an ambulance.

It was the right thing to have done. The insanely high WBC have invaded his body. They helped burst a blood vessel in his brain, abd he ended up having a massive bleed, also because his platelets weren’t very high.

He was responsive at the beginning, like while we were in the ambulance and in A&E being assessed. But now, 24 hours later, he hasn’t opened his eyes in a while. He can’t talk, abd his left side has been compromised from the bleed. He’s obviously been readmitted, and while our lovely care team on Anne’s ward tried to get him in, they just couldn’t get a bed available. So we’re on a different ward, and have family and close friends around. His brother and mother are flying in, and my parents as well. We were lucky that my Dad happened to be visiting right now, since he stayed with the boys while I was in the ambulance and hosp.

The doc, who we both respect, told me this morning at 3am that its a question of hours, not days.

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July 17, 2011

Dubliner Bruised But Not Beaten

Filed under: — brendan @ 22:47 IST

Since yesterday I’ve had a bruise on my left arm by my elbow, not caused by any bump in particular. To make the day more interesting, I got a higher fever (39.4), which we were able to reduce withcold presses, drinking cold water, and finally taking some paracetamol (acetminophen). I was really tired in the early evening, took a bit of a nap, but at 11 was sleepy again, which was different from normal.

This morning my temp was back down to 36.5. But we found some new bruises, a few on my legs and a couple on my arms. The doctor had warned us last week that a primary side-effect of the Hydrea oral chemo would be a risk of platelets going down, so this seemed to fit. (Low platelets can prompt inexplicable bruises appearing.) When we were talking about it then, the doctor said they’d just do regular blood samples in the Day Ward and top up the hemoglobin or platelets as needed.

Why the concern today? One of my biggest fears is a repeat of the retinal hemorrhaging which happened at the beginning of my first treatment back in March—caused in part due to the really high WBC and low platelets. So E and I decided the best thing to do today is to go in to the A&E (Emergency) department and just get the bloods done now, and either they’d find I needed more platelets, or it would relieve the worry. The alternative would be waiting until tomorrow and bringing it up at St James Hospital while learning more about the clinical trial.

Luckily Elana’s father was able to make a stop in Dublin as part of his trip back from his ongoing research work in Greece. So he was more than willing to mind the boys while we went in to the hospital, and my three aunts were also coming by to see both her Dad and the boys in the afternoon. All of that helps a lot with accepting the time we have to spend here waiting.

The bloods came back decent: hemoglobin at 9.3 (they want it over 9), platelets at 17 (okay for minimum of 10, but over 20 is better), and white cells at 85. That’s still much higher than the 20-30 for normal counts, but it’s got a positive: a few days ago it was 115, prompting the increase in my dosage of the oral chemo. The increased dose is doing some of what was intended. The bogus cells generated by the leukemia are still happening, but the chemo is slowing some of it down, and helping to reduce the crowding of the bone marrow with those bad cells.

The haemotologist upstairs in St Annes Ward (where I’ve spent most of my time these past months) said they want to boost my platelets and red cells. So I got one bag of platelets, and about 2-1/2 hours left of red blood cells. Taking longer, all-told, than I hoped more than six hours ago, but glad we did this.

When in doubt, READ

I’ve finished new Dubliners, an awesome collection of short stories (modeled on Dubliners by James Joyce) which was compiled and edited by our friend Oona Frawley. I can’t recommend it enough, particularly as a gift for anyone curious about modern Dublin life. The authors include Maeve Binchey (Circle of Friends, among others), Joseph O’Connor (author of Star of the Sea, one of my favorite books), and Colum McCann (wrote the awesome Let the Great World Spin).  It has helped pass the time perfectly.

OK, plug finished…

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July 15, 2011

Small update

Filed under: — elana @ 19:59 IST

We realized that we hadn’t put an update up, so here you go!

It’s been a rough week, obviously.  At the same time, the amount of caring, love, support, kindness…it has been overwhelming.  Thank you all so much for *everything*.  We can truly feel your vibes coming from all corners of the Earth, and it means so much to us.

We have a meeting at St James’ Hospital on Monday morning, to see if B meets the criteria to join a clinical trial there.  As our (fill in) doc said on Thurs tho, “It’s not a cure, but it might give you more time.”  He is a kind man, but also very direct.  So we’ll see how that goes.

On Monday he started B on 2 oral caplets of chemo, and at our Thurs meeting he upped that to 8.  Yes, 8. I found out today that B’s WBC yesterday was 115. He was admitted in March with a WBC of 110.  However, his platelets and his Hg were both up, without needing transfusions.  This is good, cause it shows that the good cells can still be generated, and aren’t being fully crowded out by the immature WBC.

We’ll see what the blood test on Monday comes back like.

Beyond that, my father is arriving in a few hours to stay for a bit, on his way from Athens back to the US.  It will be great to see him, mainly cause he’s my Dad, and also because he had cancer when I was about P’s age. A bit of his insight will be helpful as well, but also we just like being around him.  Other members of the family are planning trips too, which means a lot to B.

So the weekend is one of quiet and calm and a bit of goofy (that would be my Dad). Which I think is what we need right now.

We also wanted to say many congrats to our lovely friends Jimmy and Michael, who were civilly partnered last week. They have been together as long as B and I have, and we are so proud and happy for them.  Love you guys!!!

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