zen.org Communal Weblog

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. 😀

(The first part is a little more serious than previous posts, but not serious about cancer—serious about people.)

There are nine beds on this side of the ward: groups of 2, 3, 2, and a pair of “isolation” rooms with single beds used if people are infected with something or, equally, to protect them from catching anything.  Folks mostly keep to themselves; depending on a lot of things including how they feel, what their mood is, and their general personality, some may choose to engage in conversation with each other.

In my stay here since March 7th, there have been maybe four different patients who I’ve talked with beyond “hi” or “good morning” or brief chatty encounters.  Personalities sometimes match enough to find you comfortable chatting with each other.  I’ve made at least one acquaintance here with whom I’d like to stay in touch after we’re both back in our regular lives, so to speak.

Other times, it’s not so comfortable.  There are patients who see everyone around them as a pseudo-counselor.  I am willing to endorse talking about your problems as much as the next person.  But sometimes it’s difficult to listen to someone else attempt to wax poetic about how much they miss home, the wife, the kids, whatever.  I already know most of us feel that way—hell, no one here (whom I’ve met thus far, anyway) would choose to be here instead of being home.  And try as I might, sometimes you just can’t get them to shut up.

So you make up reasons for the conversation to stop.  Gotta go to the bathroom.  Need to try to take a nap.  Going to call somebody somewhere about something.  Or, you work up the guts to be up-front and say you don’t want to talk about that particular topic (home/family/cancer/feeling ill/you-name-it), and see how they take it.  I’ve still not managed to pull this one off, though there’s one particular person I’m saving it for, just in case they’re in a chatty mood for longer than I can let go by less affected.

You see, everyone here is different.  Not just different in the normal sense: we are each unique in our condition.  No two people have the same problems, the same state as the other, even if the sheet says you both have been diagnosed with the same disease.  There’s a mix of all sorts of these here, every day, whether patients stay for a month or just a few days.

Because they’re not the same, their experiences will be equally wide and varied.  One person can’t eat, another asks for enough food for two people.  My legs were hurting and rashy for a day or two; someone else will have a similar rash, but theirs will be some other part of the body with a cause you’ll never experience.

Depending on the person, this bit of comparison can be interesting—for a few minutes, then you move on—or it can actually undermine your own mind-space, your own feeling of where you are in accepting what’s going on.  I’ve now got one example of someone who explains what could happen next in what I’m encountering.  By sheer force of will and determination, I’ve been able to relay my brain in a way which makes this mostly wash off my shoulders.

The most recent conversation was a bit more difficult to do that, though.  I was able to seek advice from the clinical liaison nurse (I’ve misstated their title because they tend to go back and forth between two different ones, but this will do).  She’s the one who encouraged me to be up-front and tell the person I don’t want to talk about this with them, since we’re here for distinctly separate reasons, and I’d like to talk about something else.  She’s also offered to talk to teh other person  if I find this approach doesn’t work out.

Usually in life, you can get away from unending or uncomfortable conversation (particularly if you’re a parent, and even better if it’s a baby!).  It’s harder in this setting where you’ve got nowhere to use as your escape route.  Instead, you’ve got to use your head.

My head’s learning, albeit slowly because I need to experience things in order to figure out how to deal with some of them.  One of life’s unending constants.

Load ‘im up!

I’m getting two blood transfusions today because my red blood cell count (RCC) is still heading down (like the others).  Specifically,

* Red Cell Count (RCC) is 8.5 (corrected on April 22nd from low number that was incorrect), normal range 4.5-5.5 (I’m due 2 bags of blood transfusions this afternoon/eve);

* White Cell Count (WCC) is 0.2, normal range is 3.5-11 (bone marrow does this job, it’ll be a good 1-2+ weeks before these move near where they should be);

* Platelets count is 68, normal range is 150-400 (but they’re not inclined to add via a bag of platelets until it reaches around 20, but there’s still a chance they’ll reach it);

* Neutrophils is 0.2, normal range is 2-8 (no bags, this is what the growth stimulation hormone shots are to help with)

They were late getting to the hospital, so the first bag started around 6pm and will take four hours.  Then the second one, finishing around 2am if I’m lucky.  It’d sure be handy if the beep-beep-beep of the pump used to control the blood flow went off at the same time they’d be waking me up to do my obs.

This picture shows the sort of machine they use to get all of the obs measurements (from the top: pulse, blood oxygen, BP (maximum—systolic—and minimum—diastolic—pressure), and the bottom one is MAP mean arterial pressure (MAP), a number which increases as the cuff on my arm gets tighter.

Energy has been decent, particularly for most of the morning.   As a great change from playing Sudoku, I spent some time (like some other recent mornings) hacking away on what I’m usually doing for work (GNU development tools).  Funny how you miss things like this.

Later in the day, Elana and I got to have lunch together—not downstairs this time—and spend some time together before she had to go back to take Patrick to a dentist appointment.  My afternoon was spent reading more of “Heat Wave” by the pseudo-author Richard Castle, talking with another patient about random crap of no import (fine), and a 40-minute nap to make up for my morning hacking.

I’m going to Skype with E in a bit, then read til I crash out.

Hello, Mr. Keohe; want some Guiness?

I’ve never seen this spelling of my last name (er, second name) before:

and love, love it when I see stupid spelling errors in public places…as Elana can testify, I’m absolutely addicted to getting pictures of these sorts of things:

Pity you  don’t get—months from now—a free pint of Guinness for helping to fix misrepresentations of their fine, fine product…

Even though my numbers are dropping (white cells and neutrophils went from 2.4-2.6 each yesterday down to 0.8 this morning), my doctor said it’d be okay if I went home just during the day today, and return to the hospital tonight.

Okay by me!  It was a really wonderful day; lunch and dinner at home (thanks to E for real treats), and nice chats with a few friends on our neighborhood road.  And plenty of chances to enjoy the company of both Elana and our boys.   Without much of a beard now, it’s easier for more of me to glow.

My counts will keep going down over the next 2 or 3 days (my estimates may well be far off from the real versions), meaning my energy levels will decrease a bit more and my immune system will be more vulnerable to infection.  So this was my window of opportunity for at least the next week or so, I expect.   This, in particular, made it all the more worth doing.  I’m lucky I was able to; we had set ourselves up to accept either possibility.

One of the two night nurses just came in to give me my daily shot, shortly after I got my evening meds in the requisite little plastic cup.  I’m still in the routine, I know, but I’m there with clear images from a really nice break, however brief it may have been.

The irony just occurred to me: I’m a guy more than 6 feet in height, yet I’m being given growth stimulating hormone shots. In some parallel world—one where I’m writing as a pulp fiction sci-fi author—this makes sense and describes order and normalcy. In my world, though, it sounds pretty odd.

I’ve gotten two of them, now; one last night, and the second around lunchtime today. Each time the needle doesn’t hurt, but there’s a bit of a five-second sting while the hormone (reads like Hermione to me) is actually being injected. Still wonder if I could use force of will to keep pressing to insert the—admittedly small—dose. It’s only the second day of this, so I’ve got some time (2-3 weeks) to ponder it further.

Nurse Bingo

Yesterday I made a silly bingo card for patients in Irish hospitals, made up of the sorts of words and phrases we hear pretty frequently. Elana showed it to some of the nurses today, and they found some of the choices on the card funny. Nurse N said, “You need to go home, Brendan, if you’re doing stuff like this.” Sounds good to me!  Kind of funny, a hospital suggesting you get out because your brain must not be functioning properly. 😉

Does there exist a word for a group of laughing nurses?

Oooo, look, sun!

Elana and I were able to go outside for a really nice walk this afternoon. Not just on the sidewalk in front of the hospital, either. This journey let me see people out for a walk and cars going by on a busy road.

An array of people playing the role of Jay Gatsby went racing by in their splendid cars, many laughing at jokes told miles before. A delightful sampling of society, really, and a reminder, again, of a world close enough to be touched.

A moment’s touch is sometimes all that’s needed to truly make a difference.

Today was like a surreal, hallucinated copy of yesterday.  Aside from doctors doing their rounds in the morning, which carries with itself a bit of chaos (a la an episode of Entourage with the teams traveling along beside them), it’s been a pretty slow day for a hospital weekday.  Enough to make you have to convince yourself it’s actually Monday.

Soon tonight comes my first daily growth stimulating hormone injection.  There’s a little box with a single-injection syringe of Neupogen.  I’ve been told recently I could learn to do these myself if I so choose.  I’m still not sure about this.

Living on the EDGE

I underwent a new, cruel, unjust treatment here this weekend.  Nothing too serious, but boy did it leave its mark on me.  Only a few minutes before 5pm on Friday, the wireless Internet connection for the guests—their word, not ours—on the ward stopped working.  (I know the hospital’s actual Internet connection worked fine; I’ll spare you the technical part.)

My mind struggled but finally accepted the scenario of this being an accident, and not an act of revenge by a pissed-off employee who yanked a cable just before running out the door to catch the DART (Dublin’s commuter rail system).

So all weekend, I was online through my mobile phone.  And not at the “nice”, 3G, decent, usable speed of my mobile phone provider.  Instead, it was the EDGE.  Not the stellar guitarist from U2, no, nothing nearly as classy and practiced as that.  This was the “2G” mobile phone wireless Internet access which started showing up around 2003–2004.  We’re so spoiled, most of us have forgotten how incredibly cool it was to get to be online on our phones.

This blemished cousin of 3G and—gasp—upcoming 4G, EDGE is actually pretty decent.  Or so I’ve learned over the course of this weekend.  I even (thanks to the wonders of Android) made my mobile phone create a wireless network of its own so my laptop could do everything through it.  This is how I was able to actually do my email and make blog posts for the last three days.

So today the wonderful hospital employee M came by after I’d asked the great nurses making my bed in the morning to mention we’d been suffering over the weekend.  She said the IT staff claimed the guest logins worked fine.  I was able to give her a happy list of technical retort to this, saying sure, you may be able to put the username and password in which allows you to be on the wireless itself, but once there, the gates are slammed shut to actually get out to the Internet.  She left, then returned a very short time later saying somehow the IT folks had started hearing from others, and accepted maybe something wasn’t working.

Don’t get me wrong; I’ve got tons of close friends who do IT/tech support, and are absolutely excellent at it.  I routinely do it myself just for the sheer fun of it.  But sometimes, in some rare places, users still have to fight to assert their right to know what they’re talking about.

My Internet-access glands are still a bit achy, but I know their extended exposure to EDGE won’t have any long-lasting effects.  I made sure of it on Wikipedia.

Irish Hospital Patient Bingo!

Because of a morning tweet from a friend, I got the inspiration to create this: the Irish Hospital Patient’s Discharge Bingo card.  You draw a big ‘X’—or leave a drop of blood?—on each box where a nurse or a doctor have said the key word or phrase.  When you’ve got five matches in a row, you’ve won the game.

There clearly are many different ways to make the time go by when you’re in the hospital. 🙂

Sunday, the reputed day of rest and relaxation, lived up to its sales pitch this time.  It’s been a really low-key day today: no tubes into me since the fluids done overnight, no weird meds, and then a nice morning chat with hematologist Dr S just checking in with me.  My energy level was decent (more on this in a sec), and my appetite was fine.

I spent the morning fooling around with my Android mobile phone, doing all sorts of geeky hacking.  My eyes are happy enough to let me look at screens for as long as I want, which means I’m going through code-hacker withdrawal symptoms now.  This is one thing the doctors here will never be able to measure.  There was plenty to fiddle with, lots to figure out, and a remarkably content way to spend some of my copious free time.  (By the way, why isn’t the word spelled withdrawl instead of with the a in withdrawal?!  This is a classic example of a moment when I really believe a word to be misspelled, yet there it is, valid in the OED.  Go figure.)

During part of my hack-fest, I listened to a radio show on the Dublin radio station RTE Radio 1 called “Sunday Miscellany” for the first time.  I loved it!  It’s a really wonderful mix of radio essays, poetry, and music.  They’ve got a collection of past shows which I’m going to queue up (or perhaps download directly) after I’m done feeding my No Agenda podcast addiction.

When Elana was able to come by around lunch time, I was able to go down stairs, giving her a duck mask break and so she could eat her lunch while we were together.  I procrastinated on the rest I should’ve taken after being so active all morning, of course.  Later in the afternoon I finally lay down for a bit of a nap before I ate dinner/tea (the only form of noun I now feel comfortable using, otherwise it’s too ambiguous for anyone not in Ireland).

We had a wonderful day together; many thanks to my Aunt Mary (and quite possibly one or both of the others, I’ve no idea) who has Patrick and Eoin over so E could come in.

New definition of risotto

When I lived in California, my great housemate back then, Jeff, introduced me to the best Italian restaurant in San Francisco: Kuleto’s.  It was (and still is, as of a few years ago anyway when I got to go there with my friends in the Dublin Actel engineer gang) quite possibly one of the best restaurants I’ve ever experienced, anywhere.  It’s at Kuleto’s that I learned what risotto should taste like.  One of my favorite entrees?  Saffron risotto with scallops and shrimp.  Nom nom nom.

Let me offer you a comparison of that heavenly, divine, wonderful food with—what the hospital kitchen has listed as risotto.  On my plate this afternoon for dinner/tea was about 1/3 of a plate of white rice, recolored to look sort of pinkish-orange—maybe paprika?  It had an herb, or two, used to put some sort of flavor in it.  I think they may have used a little bit of vegetable or chicken broth with it.

Thank goodness I specified “with veg” with my order.

There’s a new law against blasphemy here in Ireland—at least, for a little bit longer.  I won’t file a report with the Garda.  Often the food is actually quite nice.  This time, they tread on dangerous ground.  I’m going to be a risotto snob forever because of Kuleto’s.

No doctor and no antibiotic can fix that, either.

The last two purple bags of this second cycle of chemo, each going for four hours with a four-hour gap in between, are actually done.  Now it’s a question of waiting for the next 2–3 weeks to see what happens with my cell-count numbers (which will be back at the start again).  Yesterday they gave me two blood transfusions to bring my count back up over 9.0; this evening after the last chemo bag I’m on an 8-hour saline drip to keep my fluids up.  All of my vital signs (sorry, my “obs“) have been doing great throughout these five days of chemo.  Hopefully they’ll hold up just as strongly in the coming days.

I get a one-day respite in terms of active treatment, then on Monday they start the growth stimulating hormone shots, one per day.  They’re meant to help increase production of neutrophils and thus, as described by head Dr M, in part to pull any remaining leukemia cells out from wherever they may be so the chemo can get at them.

Something behind curtain #1

My eyes are still improving, which is a great relief.  My right eye was worse struck than my left by the very beginning of this, when a couple of days into my chemo I had retinal hemorrhages in both eyes, with burst blood vessels on the backs of both retinas (nay, retinae).  Dr S told me the primary cause of this was probably my incredibly high white-cell count combined with the chemo trying to get rid of them, which could have blocked up the retinal veins.  (I may be wrong in terms of details here.)

Anyway, this made focus go all wacky and a big round blotch appeared in the vision of my right eye in particular.  Over the last few weeks, I’ve slowly been watching that “dot” as I called it shrink—a little at a time, but changing in a decent positive direction.

Yesterday, I told Elana how I could actually see *through* the “dot” for the first time.  Looking out the window, I could see the shape of the bottle of mouthwash (salt water, really) I’m supposed to use after every meal and before bed as part of my avoid-mouth-infection routine.  I also could see the shapes of the beautiful hand-knit and hand-crocheted flowers given to me by E’s incredible knitting friends.  Not clearly, yet, but I saw the form of the light in most of the “dot”, and shapes inside it.

Tonight, watching a football match on TV, I closed my left eye to test the right again.  This has always just had a grey blotch in the center of whatever my eye was trying to see, with plenty of blurry around it.  Instead, in a change which has happened within the last week, I was able to *see* something: the green of the pitch and the shapes of the players (with the colors of their jerseys) showed through what I’m now considering the remainder of the “dot”.  Looking at the wall across from me, I can see a little improvement in the surrounding focus, too.  Not tons, mind you, but I’ll take a little bit over the blur I know was there not very long ago.

Go, eyes, go!  Heal, baby, heal!  (I wonder if the hopeful growth of neutrophils will help this even more?)

Dynamic Duo

Elana and I took turns playing with wearing the duck mask today.  Well, not really playing, since we don’t have a choice, but still…she’s going to be wearing it while visiting for a bit over a week because she’s been hit with another bout of strep throat, her Spring-time arch enemy.

But, in a real treat for me, I put one on (when leaving the ward, which meant she could take hers off) and we went downstairs together so she could have some lunch.  It was really fun to get to hang out in one of the food areas—I’m sure there’s a better term for them—and just sit and talk in a different setting.  I got to browse around the shops, even talking myself out of buying a copies of The Economist and Newsweek because I’ve already got plenty enough to read.  (But maybe some other time.)

We even got to have a nice chat with Dr M, a student doctor who just finished his stint in hematology and has now moved over to focus on respiratory for three months.  He’s awesome, with an uncanny ability to keep patients calm and relaxed; e.g., he helped me by telling me what was happening during my second bone marrow biopsy, and answering my crazy questions into understanding the details of what was going on.  (I can deal with all of this much better if I have information about it—my mind doesn’t do well with the unknown, and really goes nuts with ambiguity.)

We returned upstairs after E was done with her lunch, exchanging roles again as her mask went back on before entering the ward and mine came off once we were inside.  We’ve reached a consensus which really didn’t take us very long to achieve: they’re really not that comfortable.

Kudos and thanks and everything else I’ve got to E for putting up with the silly mask when she’s visiting and unable to come in without it.

A toast to the safe choices

Bouts of nausea hit me yesterday evening, even with the anti-sickness meds, so to be on the safe side I asked for plain brown (wheat bread) toast.  I learned I’m a fluke here: no one else—and I mean no one—in the cancer ward eats brown bread for sandwiches or toast.  They’re all addicted to white bread.  Between this and not getting vegetables with their dinner, I really wonder how it is that these people heal up at all.

I learned I have this distinction in a conversation with Miss M, the cool food caterer for the ward.  For breakfast, I asked for corn flakes, some orange juice, and two pieces of brown toast for breakfast.  (I hardly ever eat bread at all because—long story short—after we learned Eoin, our 4 year-old, was allergic and we stopped eating it in the house, we also found our energy levels were really improved.  No afternoon drowzies.)  I noticed Miss M had to go back to the kitchen area, and then returned with my tray.  I asked which part of my order had made her have to leave the normal push-cart she uses, which comes loaded up with a big pot full of porridge, boxes of cereal, yogurts, and more.

“I had to get your toast!” she replied.

Eying the push-cart with its huge stack of toast, I was puzzled.  “Does nobody else eat brown bread for toast?”

She shook her head.  “No, all white bread.”

“Am I the only person in the ward who does?!”

“Yes—well, actually I remember a lady who was over in the ladies’ side of the ward who was here a while ago, and she did.”

I’m still not quite sure I understand why this is.

So, anyway, avoiding the heavier (actual dinner/tea) food really paid off.  Everything stayed down, and the nausea turned its back on me and walked quietly out of the room.

Why my legs hurt

Great Nurse Sh (distinct cuz there’s another Nurse S, also great but different name) explained to me that one of my chemo meds, Cyterabine, has a puzzling couple of side-effects which I’d been experiencing.  It’s the likely cause of some red spots I saw on the sides of my shins, as well as a shooting pain I was feeling in both legs from my ankle up toward my knee.

The spots (transient rashes) are gone, and the pain has eased up considerably.  This weird intermittent reaction crap is a little unnerving sometimes.

How real men knit

Today for my motivation to kill some time, I knit after breakfast while listening to a recording of Jimi Hendrix performing at the Isle of Wight Festival in 1970.  My friend Walter, who loaned me an iPod with the music on it, was one of the 600,000 people who got to see the show, live.  I’m sure he was lucid and enjoyed every note. 😀

During the chemo later in the morning, John Lee Hooker kept me going.  Then tonight, watching the Manchester City v Manchester United FA Cup semi-final football match, I finished my practice.  I knit all of the second ball of yarn, knitting on one side and purling on the other, with considerably fewer mistakes than my first time through.  Not error-free, certainly, but I’m pretty proud of how it went.

My experiment was to see if it was possible to watch a sporting event while knitting—and not messing up.  Yes, it’s possible to watch it.  No, I’m not yet able to do it and avoid mistakes.  So I know I saw more yarn than football this afternoon.  Don’t mind, though; I finished it.

Tomorrow, I’ll start my first try on a real knitting pattern: a Mistake Rib Scarf (Chunky), using a pattern from This Is Knit, E’s workplace and a place I consider the hub of knitting in Ireland.  A pic of the result of the pattern is available online, though mine’s going to be grey, not pink.

Ambitious much?  Me?  Naw…

Less sleepy today, thank goodness.  We’re on Day 4 of Round 2, which means I’ve finished one of the chemo drugs (the one looking like Kool-Aid), and just have the other two for today and tomorrow.  The first dose was given in a 30-minute drip at 10:30.  Around noon I felt some of the requisite fatigue come in, but much less than yesterday.  I was still able to do things like knit, read email, and think about what to write here.  The fatigue wore off after a couple of hours.

I was even able to eat lunch and have it stay down.  This afternoon with the second dose going for about 20 minutes, my tummy’s a little less settled again and I’m getting a little drowsy.  They’ve given me some “anti-sickness” medicine which I’m hoping will do the job with dinner (dammit).

By the way, while I was eating lunch one of the nurses came over.  She asked how I felt while eating the food, and I said I was actually doing okay.

“Good man yourself,” she replied, and continued on her way.  I really enjoy hearing phrases common to Ireland but still new to me, even though we moved here more than 12 years ago.

Donate, Donate, Donate

Today for the first time I went through the blog posts in early March which were made by Elana because I was too out-of-it, and because my eyes had just gotten messed up and I couldn’t use the laptop anyway.  It’s amazing to see the experience from another person’s viewpoint.  There is also no doubt the experience (thus far, anyway) of this round of chemo is remarkably different from my first.

One thing that really struck me in E’s writings was the note that one of the bag of platelets was dated just a week before it was being given to me.  As these bags of blood and platelets come in to me, I haven’t really thought about the fact that another human being actually took the time out of their day to stop, sit, and donate this thing which is helping me get better.

So little effort to help make someone else’s life better—or be part of why they still have their life, period.  Holy shit.  (Insert emotional flood here.)

Funny Coincidence

On February 23rd, I had the fun experience of being interviewed for a popular public radio show in America called “The Story with Dick Gordon“.  They were interested in talking about my experience having survived a really bad car accident in 1993.  The host Dick Gordon was physically at the station WUNC in North Carolina; I spoke with him from a (tiny tiny booth-like) radio station studio here in Dublin.  In our chat, I shared what I could about how it felt to come out of aphasia, find my memory remapping itself, and lots of other things.

Less than two weeks later, I was admitted to the hospital on Monday March 7th with leukemia.   And my interview of “The Story” was broadcast and released for online listening the very next day.

I’m interpreting this as an incredible coincidence laden with good, positive karma.