zen.org Communal Weblog

March 21, 2011

Two timing

Filed under: — elana @ 21:21 GMT

So nice to have B writing again!  His view can be so different from mine…

For the record, his numbers are stable.  Today’s were (I think, I can’t find the paper, but I’m pretty sure)

WBC 0.3

HG 8.5

Platelets 31

They gave him 2 platelets today, to keep them up.  Their goal is still around 50, but jeeeeez, I dunno if there’s enough platelets in Dublin for that!!  In each bag (pool, I think they call them) there’s 272ml, so he’s getting about a pint a day.

Today was mainly playing cards, looking at email and answering a few, and just chatting.  And some walking, he likes the walking.  We can’t go far, since he’s not allowed off the ward (“PLEASE?  It’s so nice out today!” was shot down fast), so we walk one end to the other, turn around, walk back.  It’s not a large ward.

One of his roommates went home today.  Big news, since B and his old roommate, J, were moved from their room to a curtained off area with 3 beds.  So it’s back to it being J and B, and I wonder if there will be someone new when I go in tomorrow?  Their old room was taken by two men who needed to be in isolation.  Fine, isolate ’em!!

It’s been much quieter on the ward, everyone’s in a groove, it feels like.  I realized today that B is the youngest, from what I can tell.  The guy who left today was next closest, but the others are all over 50, easy.

Tomorrow will be a bit funky, since I won’t get in til almost noon…Eoin’s getting a new bed from Freecycle and I have to go collect it! YAY! He needs one, and his cot bed is going to someone who needs it too.  Love it when that happens!

Each day, B is a little more “there”. He got really tired today (we waited in total for that MRI for 1.5 hours and we forgot to bring his water!) and I don’t like when that happens, because it can lead to him picking up something even more easily.  The goal is for him to stay healthy, get those WBC up and the cancel cells eliminated.

Today’s shoutouts: Rita, for the great dinner which we loved (and there was plenty!!!); Walter, for being there, and for everyone at the school this am who came up with hugs and a quick chat.

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Tired but positive

Filed under: — brendan @ 19:44 GMT

The test results of the Friday probe were fine, with some further followup tests due to double-check their findings, but they expect them to come out okay too.

It’s hard to catch, but I’m finding my eyes are slowly—slowly—improving.  I can see some things a little bit better than I could like a week ago.  Didn’t really start comparing until today.   If I cover my right eye, my left I can see the LG brand name on the bottom of the TV suspended from the ceiling.  I wasn’t able to do that last week.  I don’t know how long it’ll take, and still have issues with the eyes being able to focus, but that’s reportedly part of the process.  I can see Obama on the news, at least intermittently.

Had a long wait for an MRI (they want to be able to have a specialist further verify that things are/will heal up properly relatively on their own as part of th natural process).  I forced myself to walk around so I wouldn’t conk out, but boy did that drain me.  I may go to sleep relatively early and let them wake me up when it’s time to do the blood transfusions (two of them tonight).

While inside the MRI unit, they put big headphones over my ears—playing Radio Nova, the Dublin rock station which I would play all day long while working at home.  Woo hoo!  I have a hunch they tailor that particular thing to each patient. 😉

I’ve been given the challenge to drink eight ups of water in a day. If I can maintain that, they don’t need to hook me up to the IV for fluids.  I’m going to give it my best shot.

Tonight I’m going to try playing Pyramid, a game E and I alternated playing recently.  Better than listening to much more news, I think.  The goal is to get rid of pairs of cards which sum up to 13; no card card be sitting on top of one to remove it.  An alternative to Solitaire (or could even be a variant of it, actually).  All of this from an awesome book E gave me for my birthday a couple of years ago: Ultimate book of Card Games by by Scott McNeely.

P.S. As ever, apologies for any typos, grammar errors, or misspellings; it’s difficult to copy-edit beyond a certain level with the WordPress interface.  At E’s suggestion, I’m going to try to composing in an actual word processor next time and see if it has a better interface.


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Better sleep, feeling ok (B)

Filed under: — brendan @ 09:00 GMT

Got a sleep-in til 6:30am this morning.  Woo ho!  Night went pretty well.  Was up til nearly 10 waiting for my temp to go down enough so they could hook up the further blood transfusion.  (So much for my sleep-by-9 plan)  But I didn’t have to stay up—could’ve gone to sleep and they’d wake me up when it was time, but I wanted to challenge myself having already gone longer than I could’ve imagined.

Breakfast each morning presents you with these choices: porridge (a frequent for me), corn flakes, rice krispies, or a couple of single-boxed cereals whose-. names I forget.  You’ve the option to get a piece of rbead (white or brown) with butter and a package of jam.  If you’re interested, you can ask for a cup or two of orange juice.  That’s about the extent of it.  And the ever-present cup of tea.  (Though coffee co an option, I have little confidence in the quality of the coffee I’d be receiving. 😉 )

(As an aside, I’m typing this into GNU Notepad++, the best Windows text editor on the planet [if you’re stuck using that OS cuz that’s what’s on the laptop you’re using and will stick with til after all of this, at least).  I tried to add the spell-checker support, but after a few contortions I’m giving up.  The integration with GNU Aspell is found lacking—it needs to be fully automated, and not rely on the user do something independently and then restart the editor.)

A little less pleasant

One of the many inelegant side-effects of Chemo is the diarrhea.  Sometimes seveere, other times just “more solid”, shall ne say, it’s still frequent enough to make your lower half get a bit unhappy.  They’re given me two products to try to help with this: one is called Clini San Emollient, which is a gentle soap-free foam to try to clean and sooth the skin which is feeling burned by the frequency and strength of each episode.  The other is Zinc & Castor Oil Ointment, similar to the nappydiaper-rash cream we used with the boys when they were tiny.  Combined, these two things sure make a difference.  This experience is odd … they can and have given me Immodium in the past, but I get the impression that it’s in my best interest to let my body do its own thing rather than suppress it (for later).

A little more plesant

It’s early enough still, with clouds in place, that I’m able to raise the blind over the window by my bed and look out at the Dublin Bay.  Usually the signlight is too bright and harsh on my eyes.  This time, I could at least see the waves (with some effort, Mr Blurry Eyes) and across to Howth.  The buildings for the hospital don’t make it the most aesthetic view in the world, but given that I don’t realy have a selection, I’ll take what I can get.


On the tiny little box of a table next to my bed, I’ve got my HTC Desire mobile phone (for texts and often checking email), an iPhone (no SIMM but loaded with great podcasts), and this laptop.  There’s a small power strip plugged into the wall on one side of my bed where all the plugs are; it travels under my bed to the other side by the little table, where I can plug in these things.  I’ve also got an old-school battery-powered Sony Walkman which lets me listen to the radio (usually Radio1 or Radio Nova 100) with really good sound. 🙂  GIven my blurry eyes at the moment, it’s much easier than trying to get the same going on my HTC Desire at the moment.  (There was a good HTC app for the radio, but having rooted my phone I’ve lost the ability to get at that particular gem.  S’ok, still worth roting. 🙂 )

Our wireless society still hasn’t quite defeated the need to have a bunch of wires coming out of things in order to charge them.  Wouldn’t it be cool if your mobile or your laptop had a battery which, on atual use, re-charged itself?  A Prius Laptop?

What’s the magic number?

I’m suddenly curious what the actual number of pills and meds hppens to be what I’m taking each day.  Maybe tomorrow I’ll start the morning with a running tally and see where it ends up at bed time.

Post-meal routines

In the real world: “make sure to clear your place!”

In the leukemia chemo-loaded vulnerable-immune system world: “When you’re done,

1) rinse your mouth for about 30 seconds using a sodium chrloride irrigation liquid, which is basically salty water, then spit it out;

2) squirt some stuff called Mycostatin into your mouth and slush that around for 20-30 seconds.  It tastes a little sweet, and is meant to prevent fungal infection (thrush) in your mouth, throat, and gut.  Anyway, you swallow this one, and I try to then not sip water for a little bit to let the medicine to its job. and

3) finally, I’m supposed to be using eyedrops about every 4 hours to prevent conjunctivitis.  The Pred Mild tiny bottle I use does the trick, which I try to group with the after-meal routines since that makes it easy to rememember and usually gets it close to target.  The exception is at night … I always have to do another dose of drops before I go to sleep.

The drops themselves actually burn, ever so briefly, when they’re applied.  A surprise the first time it happened, the feeling is now less of a shock and I just take it in stride.  (Like everything else?)

More information coming

Hopefully today, or realistically tomorrow, the doctors will get the results of the probe (alien probe? no) into my chest on Friday where they did a biopsy and some samples.  Elana filled me in on just how stoned out of my gourd I was after the anaesthetic they used on Friday—the afternoon and evening of which I really don’t remember a thing.  Anyway, I’m hoping they’ve figured out whatever infection is causing me to get brief coughing fits, since the x-ray itself showed an infection.

More later.

P.S. Current body temp 36.7, woo hoo!  37 is perfect, it’s when my fever goes up to 97.8-38.2 that it causes havoc because then I have to be given paracetamol (Tyloneol) to bring it back down in order to receive the platelets or blood transfusion.  I don’t know that I’m due any of those things this morning, but the absence of a fever is wonderful.

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