zen.org Communal Weblog

A few different people have all asked Elana the question, “Why is Brendan still in the hospital?”

Short answer: Because they’re still in the second round of trying to deal with my condition (for lack of a better word).

Longer answer: After the first round of chemo, the expectation was that the leukemia would probably be in remission, and if it was I’d get discharged and come into the “day ward” periodically for the remaining batches of chemo to finish off the job. Unfortunately, after looking at the bone marrow results, they found that some leukemia cells were still there. So on April 12th, I began my second round of chemo.

That went for 5 days, then a 1-day break. Upon completion, we were told it would take approximately 2–3 weeks before we’ll see various numbers, and the neutrophils in particular, hopefully start to climb.  The growth stimulation hormone shots are intended to help encourage this.   It’s now the end of week 2, and we’ve still got another to go in which no changes may occur.

I’m not able to get out of the hospital right now because of those cell counts. No white cells and among those, no neutrophils, mean I’m at significant risk for infection. If right now I went into a movie theater for the length of a feature film, I’d walk out with at least one, and probably two or three different infections which would have a field-day inside me.

Not to suggest I’d be stupid and go into such a crowded place.  But the emphasis is on the fact that I’ve still got a lot of (regretable) physical dependency on being in here.  Alongside the immune system is the periodic reduction of my red cells and platelets, because the chemo is still working away in there. This is one thing which has me curious about the smaller drop of 4 for the platelets overnight (see below)—making me wonder if this is a hint that the chemo is finishing up and maybe next week will show something. But I cannot focus on this or get my hopes up (beyond the bit they apparently already are), because we’ve learned the hard way that it’s impossible for us to predict things.

So we just wait, and hope, and try really hard to not go nuts with the length of time it’s taking.

Dunkin’ platelets

So last night my platelets went from 13 down to 9, and the doctors decided to give me a bag today, and plan to do another tomorrow. (Stay over 10 anyway, and over 20 would be nicer.) What struck me as interesting was the drop of only 4 in the count; previously, they were 6 or more. Maybe it doesn’t matter. But I’ll look with interest at the number tomorrow, after having gotten the platelets today—and what tomorrow’s supply may do to help, too.

Today was pretty smooth and non-eventful (well, for us here). I’m attributing it to the weekend about to start being the second 3-day break in a row.  The whole country’s taking relaxation pills.  Ireland likes to have “Bank Holiday Monday” once a month for most of the year.  It’s probably no coincidence that Easter’s Bank Holiday Monday at the end of April coincided perfectly with May Bank Holiday (what others call May Day or Labour Day, though Ireland plants it on the first Monday in May instead of May 1st).

It sounds like at least a few nurses around this hospital took the day off solely to watch the Royal Wedding[tm] which was in the middle of the day.  Some of the female nurses who were working reportedly timed their regular break to coincide perfectly with the actual marriage ceremony.  There are so many words you could try to use to describe the level of obsession going on about the wedding event; it was on most of the TV channels.

Apparently the wedding was enough of a big deal that it meant some nurses chose to take the obs (measure your blood pressure, etc) before the wedding.  One explained that they never check blood pressure during a football match.  Apparently something similar happens with big fancy internationally-televised weddings.

Note to self

Each day when I get the growth stimulating hormone shot in my tummy, I have to remember to share the tip I got from great male Nurse D today: if you don’t pinch the skin when inserting the needle, the injection itself DOES NOT HURT.  When you pinch it, it feels like the tissue inside is burning for about 3 seconds.

Maybe I’ll find an Android app to remind me of this on a daily basis.

The doctors have sent a blood sample to the blood bank (which is part of the hospital) to test it for HLA antibodies, the little buggers which could be latching on to the platelet cells and tearing off their outside “skin” (as it was described to me), thus making the cells come apart. They (the doctors, not the platelets) aren’t sure if I actually have the antibodies, so want to do the test before deciding a course of action. Bummer is the results of the test may not be available until the end of this week or early next week.

Yesterday evening an hour after the bag of platelets was given to me, my count had gone up to 25 from the early-morning number of 19. (I don’t know the rate at which it changes, but this suggests to me a change of at least 7+ in the count, which is near the common average of 10—near enough to make me not sure what the deal is yet.) I’m getting two bags of blood tonight because my Red Cell Count (RCC) went under 9.0 to 8.5, and I expect tomorrow I’ll be getting more platelets.

Apparently they’ll just keep topping up my platelets as long as they go to the low end of the range 10-20, awaiting the test results. And time slowly drags on while we still await upward movement of the daily numbers (go white cells, go).

Knitting with Indiana Jones

Today Elana taught me what you do when you’ve completely botched a row and want to do it over again. Apparently I’d knit a “short row” (which sounds to me like the start of the “Short Round” character from an Indiana Jones movie). I’d been knitting a row, and at some point along the way a nurse came to talk to me, so I’d stopped and put the knitting needles down.

When I picked them back up later, I couldn’t remember which side I’d been making—so I picked one, and kept going. Turns out I was doing the equivalent of driving 2/3 of the way down the driveway, then doing a U-turn and driving right back up. I can see it now, and also know how you undo all 20 stitches of a row to try them over again.

I’m thinking of this as the first pop quiz in this interesting class I’m doing. Hope I’m passing. Think I can bribe the teacher?

Yesterday, I got another bag of platelets because despite those of the day before, my count only went from 13 up to 17. (The increase in the number being counted can on average increase by up to 10.) The doctors said they would give me the bag yesterday evening, and see what my count looked like today. It apparently didn’t go up as much as they expected, because they did another bag this afternoon, and an hour later had the nurses draw another batch of blood samples from me.

The doctors are trying to figure out if my body has generated some antibodies (HLA antibodies) against platelets which aren’t a very close match to my own. If it has, for whatever reason, they’ll look into finding a source for ones more compatible. Since the numbers did move up, even a bit, I’m curious what this means regarding the level of antibodies, if there are any.

We’ll have more detail about this tomorrow.

Musical beds

I’m back in bed 4. For reasons we can only guess at, there was a big shuffle of beds today. Each time, the patients (all currently able to be mobile) effectively get out of the way while the nurses all push beds, bed-side units, and tray tables out of the rooms and into the halls and across from the elevators. Cleaners scrub the daylights out of the floors and walls and everything else where each patient was; our beds and everything else with them get every bit of exposed metal and such also scrubbed to a shiny polish.

In preparation for the move, I take drawings the boys gave me off the wall, as well as a great picture of them, and put them on my bed with the other stuff I’ve got on the window-sills. I then reverse all of these steps in the new location so the end result looks pretty similar to whow it started. It’s interesting how this saps a hunk of energy out of me. I’d feel like a yutz if I lay in my bed and had the nurses do ALL of it, though, since both they and I know full well that I can do at least some of it and want to help.

Relaxing without a pill

A lady came by today while Elana was in to visit. The hospital has a range of complementary therapies they offer to cancer patients, both as inpatients and outpatients. (Not uppatients or downpatients, though.) It’s intended to promote relaxation, reduce anxiety, relieve stress relate symptoms (like pain, muscle tension, and poor sleep patterns, or even treatment-related symptoms like nausea and fatigue.

It’s all free, and in particular is carefully tailored to accommodate the unique limitations during and after cancer treatments. e.g., my platelets are still under 20, so she’ll have to use a particular approach to any massage or similar form of systematic touch, since we’re more vulnerable to bleeding and bruising compared to “normal folk.” (My name for it, not hers.)

She has to get the approval of my lead team doctor (officially my “consultant“), but assuming she gets it, she will be in tomorrow morning to talk with me about what might be the best set of therapies (aromatherapy, massage, and/or reflexology).

Pity all of the oxygen around here will definitely rule out lighting candles.

As a way to help patients sleep through the night, at least on the cancer ward of the hospital, they frequently give us a “relaxation pill”—what we might also label a classic “chill pill“. More familiar to many by the commercial name Xanax, the medicine helps with all sorts of things which are high up on the list for this group: insomnia, anxiety, abdominal pain, muscle cramps, vomiting, and depression.

Two or three times a day we get little plastic cups, sometimes with a liquid, most often with an assembly of whatever pills we’re supposed to be taking for the moment. Much of my stay (I can’t speak for the first couple of weeks) has had these little oval Xanax pills included in my little plastic cup. Once or twice a nurse will ask if I “also want a relaxation pill” before delivering the mystical cup.    I’ve experimented with saying, “No thanks,” just to see if I’d be able to do it. The idea of relying on the medicine to be able to get a night’s sleep—which wasn’t necessary the few times I’ve gotten to sleep overnight at home in our own bed—isn’t appealing; I don’t want a chemical to be why I don’t wake up at night.

A few days ago I actually looked, and realized the Xanax wasn’t there any more. And, for the most part, I’ve been sleeping through the night just fine. Another sign of progress? I sure hope so. I know it’s still available to me (pill pill PILL gimme a PILL) if my mind decides to stress me out.

But for now, let’s see if I can stick with it.

Irish men unite

Tonight I spent the evening like lots of other men in Ireland: watching the Champions League football match with Schalke v Manchester United, knitting, and sipping a cup of water. Well, as lots of folks know about me, I’m not into worrying about matching up with stereotypes.

Open your …

The daily question which still cracks me up, sometimes asked a few times through the day by different nurses, is, “Have your bowels opened today?” My imagination latched onto this last night.

1. “I can’t open my bowels until after that first cuppa tea…”
2. “Boy the morning starts right after I open my bowels…”
3. “You look hung over, your bowels are barely even open.”
4. “That meeting was a real bowel-opening experience.”
5. In theatres soon: Bowels Wide Shut
6. “OK, no problem; I’ll keep my bowels open for deals.”
7. “Try to keep your bowels open and stay awake!”
8. …

Maybe I should’ve taken a relaxation pill.

One of the team doctors dropped by this morning to see how I was doing, to which I was able to say I’m doing okay at the moment. Waiting, patiently, for the week to go by. He reassured me to not worry about it if I happen to develop a fever because of my way-low white cell count weakening my immune system. It’s all normal, and if it happens they’ll just handle it with antibiotics and fluids and make it pass.

Later in the day, the team lead doctor along with the morning team member came by for a really brief check-up.

“Are you behaving?” she asked with a smile.

“Of course!” I replied. “I haven’t been scolded by a nurse in days.”

Platelets, you scorn me so

Yesterday we noticed a little bruise to the right of my belly button, and I could feel a little bump underneath it. We asked for a nurse to check it out, and after a quick examination she explained it wasn’t something to worry about. My low platelets count meant when they gave me my daily growth stimulating hormone shot the evening before, it bled a little bit just under the outermost layers of skin. Looking today, the other side didn’t get one from last night’s shot. Nor did the one I got this afternoon. Not that I’m focusing on it…this is just a variant on the whole boredom + belly-button lint thing bad comedians try to use. 😉

This afternoon I got a new bag ‘o platelets. (Count down this morning from 20 to 13). Fingers crossed!

Skype Lego advertising

Tonight before their bedtime Patrick gave me a great display of a new set of Star Wars Lego (his crack addiction) which he’d received from my amazing Aunts. It was all built, the ship and its crew of four. I asked him if he could set it up on the table in the same layout as what appears on the front of the box. (“It does what it says on the tin” is a phrase you hear in Ireland all the time.)

The next 10-15 minutes were spent getting this ready while Elana and I got to chat. We’re a couple of days apart because she’s not going to be able to get into the hospital until Wednesday; real life is getting in the way. Our car needed to prepped/cleaned today and will go through its National Car Test tomorrow (Tuesday). This is kind of like a car inspection in the US, but costs more and has little purpose except to make lots of money. Arguments are made in support of it, claiming it keeps defective cars off the road. I feel the frequency of the tests, though, undercuts that particular argument a bit.

Blood thirst at night

Today I’m getting two blood transfusions, the first of them again starting around 6pm and going for 3 hours. So my blood party will be done somewhere around midnight, give or take. (My count, which they want over 9.0, was at 8.4 this morning.) I wonder why they a) order them so late, or, if not that, b) get here from the blood bank in the early evening, shortly before dusk?

It still seems to be a seed for an Anne Rice knock-off.

(I used up a lot of my evening time getting something technical working, as noted below, so this blog post will be a little short. 🙂 )

This morning, I got to talk with the boys through a Skype video chat and wish them a happy Easter. They both proudly presented their chocolate easter eggs and baskets, and were a delight.

Happy Us Day

With thanks to our dear friend Magda, the boys had a fun Easter afternoon with her, some friends, and her family specifically so Elana could come in for a while.  And, they’re spending the night at her place to give E a much-needed break.  It was a lot of fun, and we both felt great knowing she didn’t have a specific hard deadline for her exit.

Platelets still to come

Despite the platelets I received yesterday, my count only made it up from 19 to 20. The haemotologist from the team who’s working the ward today explained some of the reasons this could happen, including a chance my body just didn’t like them as close enough a match to my blood type. They’re not worried, so neither am I. If the number is under 20 tomorrow (likely), they’ll do another bag.

Hospital Hack

By way of steps I won’t write in detail here, I’m now able to use my laptop or my Android mobile phone to listen, via the hospital wifi, to any of the music which is on our Macbook at home.

Ahhhhhhhh. Between this and the great collections of music friends have loaned me on their MP3 players, I’m armed to have all sorts of stuff to enjoy.

While I’m knitting at the same time, of course. Tunes like AC/DC are serious knitting motivation tools, I’ve found.

One of the night nurses told me something interesting, something a little bit odd about this room at the hospital.  It’s not haunted, it’s just—jerry-rigged.  I can see MacGyver doing this trick to make sure he can get help at the last minute, or set off some bomb hidden in the walls behind the bad guy.

Any time the patient across from me (there are only two beds in this room) turns the light above his bed off or on, it makes the nurse call button on my side think it’s been pressed.  For whatever reason, my neighbor hasn’t taken to turn on his light very much since we’ve been sharing this space.  All this means is I’ve not yet been able to train myself to consciously turn it off when I see the light start blinking.  This makes me the perfect unprepared adversary for my imaginary episode.

Brand spankin’ new platelets

This afternoon they gave me, via my central line, a bag of platelets because the platelets count went under the magical 20—only just, at 19, where the numbers they like is 150-400 (though 68 yesterday wasn’t of concern).  We looked at the label, and were amazed: these were donated by someone yesterday, April 22nd.

Just can’t get used to the idea of this.  I wonder where that person is right now?  What did they do after they left wherever they did the donation?

They’re giving me this because platelets are important for helping make blood clot, among other things.  This is where my eye problems came from.  We had a couple of great conversations with one of the medical team haemotologist (specialize in everything related to blood) and, later, also my lead doctor.  At the beginning, around day 3 of being in the hospital, the retinal bleeding happened because of a number of things including the fact that my platelets were incredibly low, while my white cells were way way too high.  The result?  Anything which might start to bleed will struggle to make it stop because the excessive white cells are crowding out the platelets which are racing like firemen with sirens blaring to help fix it.  (At this point, I trust our family and friends with drastically better qualified knowledge of this stuff can let me know if I’ve misrepresented anything.)

Knitting II: Read The F’n Instructions

So last night I realized my knitting project had somehow strayed from where it should be; instead of 20 stitches per row, it had somehow grown to have 25.  Oops.  S’ok, having taken a few days’ break (to do computer hacking [in the good whitehat version of the word]) from knitting, I decided to start over.

When Elana came to visit today, I proudly presented my completely-restarted project, complete with fresh slipknot, cast-on, and a decent number of rows completed.  Her expression told me something didn’t look quite right.  Did I drop stitches and not notice?  Did I do a yarn-over?

No, I hadn’t read the damn instructions properly.  Step 1: K2P1 x 6 then K2 (pretend this is in Greek characters), Step 2: Knit all rows.

Helps if you actually DO step 2.  It’s like I turned on the oven, put the casserole in, and forgot half of the ingredients.

So I’ve started over, again.  This sort of thing can certainly happen when you’re programming, so it’s not necessarily so odd an experience as to make me think I should give up.  It’s more a realization that I’ve not been really paying attention to what I’m doing.

Where’s the spaghetti?

Tea (dinner) tonight was supposed to be spaghetti bolognese.  It tasted ok, but if you look in the picture, do you see spaghetti, or do you see twisted bits of pasta?

I know, it’s fusilli which technically is sometimes termed “Twisted Spaghetti”, but I argue it looks absolutely nothing like what you’d think a bunch of spaghetti twisted together would really look like.

By the way, if I hadn’t said “with veg,” the two halves of roasted tomato wouldn’t have been on my plate.  I’m just sayin’…

Hospital TV is all about mind games

Except for the occasional sporting event (like the rugby match I’m partly watching right now while writing this), as I described before I don’t watch much TV here.  Thankfully the patient who moved into this room with me yesterday does use headphones, all the time!  No more loud TV until one of us move.  Woo hoo!

But the person setting up the television feed inside this building either wanted to play a practical joke, or, more likely, was working their job without any attention to—I don’t know, to order and logic?  Thinking it through?

This is part of the list of channels:

• Channel 1: RTE Two
• Channel 2: TV3
• Channel 3: RTE One

Do you see Waldo in that list?  Do you see, how I do, a much more usable pattern which would make it really easy to predict what number to press for a given channel?

I think that’s just mean.  But maybe it’s my obsessive side which is reacting to something not noticed by normal, sane, stable patients.

Today was pretty harsh, so I’m looking forward to starting over tomorrow.  Elana and the boys came in to visit today, but a jerk playing the role of security guard downstairs, for the first time in seven weeks claimed the boys weren’t allowed to come up to St Anne’s Ward (the cancer ward) to see me.  He argued with E that the ward should have called down to him if they were meant to visit.  This back-and-forth went on for a few minutes (at least).

E didn’t put up with it and just walked away, bringing the boys up.  (A nurse said the security guy should have called them.)  Patrick was in a weird mood when I saw them come into the room because of this, and it took some effort to get him past it.  Finally we were playing cards and he had his nice, newly-cleaned teeth smile on his face.  Eoin was scribbling in his activity book after trying and bailing on cards.  Elana was (I hope) relaxing in the chair a little, while the three guys were on the bed.

Unfortunately the visit didn’t end well; another patient had told the nurses that they were concerned about children being on the ward (fear of infection), so they had to leave about a half an hour earlier than we’d been planning.  (This never happened before when the boys were in to see me.)  The situation was really rough on both E and me.  Something of a shock, which we’re still processing, since it just put the stage lights blazing down on the fact that they’re at home and I’m not.

Processing and recovering: that’s what we keep doing (or are expected to be doing).  Not easy.

Invisible headphones

The guy filling in for Miss M (the amazing catering staff member for the hospital) while she’s got a couple of days off made it clear he’s listening to something I can’t hear.

“Cuppa tea?” he asked.

“Sure, with milk, thanks!”

“Sugar? Milk?” he continued to ask.

“Umm, just milk please.  And can I get a pack of the ginger nut biscuits as well?” (As well as the ones you just put down on the tray.)

“Sure.”  He comes in, puts down the ginger nut biscuits, and walks out holding the first packet, picked back up off the tray.

I wonder what he was listening to?

Smoke signals gone modern

Having moved beds, I’m now in a room a short distance down the hall from the nursing station.  One interesting difference presented itself compared to where I’ve been for the last few weeks.  People put on their thin plastic aprons and latex gloves—protecting patients from catching anything off the nurse or doctor’s clothing–outside in the hall before coming into the room.  Pulling the plastic out of the container on the wall isn’t particularly quiet, so we can hear the noise before anyone comes in.  Just enough time to hide the booze.

Geekfest morning

I’ll save you the technical details here (already in another blog post), but I succeeded in getting around the really crazy Web filtering which is place when using the hospital wifi Internet connection.  This means I’ll be able to stop seeing error Web pages with big red words telling me I’m not supposed to access information like “Multimedia Content” (mp3s), “Advocacy Organizations” (the EFF at eff.org), or “Freeware Downloads” (pretty much anything you can download for free).

Primary schools in Ireland use the same sort of filtering service, with different levels of coverage deciding what’s okay to see and what isn’t.  Apparently the hospital is more worried than teachers and principals.

The Internet connection in the hospital can be really picky about what I can and cannot visit for a website.  e.g., anything with an mp3 to play is blocked.  I can see why it’s necessary to do this at a primary/elementary school, but in a hospital?  It has some odd side-effects (again that word), including blocking at least part of what the TweetDeck client for Twitter/Facebook/identi.ca/etc etc etc.

Up until now, I’ve been using an SSH tunnel to be able to have a proxy for Firefox to get around this.  But something this morning made my brain think a little bit further: I’m already bringing up a VPN connection to home in order to be able to do the SSH connection to my home desktop anyway.  So what if I look at using that same desktop as a formal proxy, and not just an SSH tunnel?

I’d forgotten that I have squid running on my Ubuntu desktop anyway, to take advantage of its caching of Web content.  So I logged into home, edited my /etc/squid/squid.conf to make sure the line

http_access allow localnet

was uncommented, and did

sudo restart squid

Since ‘localnet’ is defined earlier via the ‘acl’ setup to include the subnet used for my VPN, it’s pre-destined for exactly this task.

And it works, perfectly!  And all pages come up dramatically faster not only because my connection at home is fast (yay UPC), and because the traffic is LZO-compressed thru the VPN.  It’s also taking advantage of the squid caching so lots of the content is immediately available from the squid server.  And by configuring my laptop to use it as the system-level web proxy (not just in Firefox), it fixed TweetDeck, too.

No more SSHing, now I can just leave it on all the time.

Warning: this appears to make the AdBlock Plus plugin for Firefox unable to actually do its job.  I had to install adzapper on my desktop at home and make squid use it.  I’m running Ubuntu 10.04, which changed the older approach to start scripts to instead do “service” things via “start”, “stop”, and “restart” scripts in /sbin.  So I had to adjust

/etc/init.d/squid

to comment out one line and put in two replacements:

#start "$JOB"
 ( /sbin/stop "$JOB" || true ) > /dev/null 2>&1
 /sbin/start "$JOB" > /dev/null 2>&1

so the adzapper install script, invoked by

sudo apt-get install adzapper

can actually do its job properly.

It would appear I’m waking up here pre-loaded with geek urges. 😀