zen.org Communal Weblog

Each morning and evening, I get little plastic cups with a variety of medicines in them.  One has a horrid-tasting liquid (same as the reaction of children to most cough medicines).  Another cup has a few pills in it.  They also give a small sleeping pill to help settle the night’s rest.

Last night, all I got was the sleeping pill—the doctors decided I no longer need the others.  And this morning, where there would normally be 4 or 5 different pills, they only gave me two. Good sign!  Yesterday, they want to start reducing the number of antibiotics I’m receiving.  I think they have confidence in my body’s defense systems so far—I hope it proves itself strong and up to the task.

Made it through all 90 minutes of the game last night; stayed up until 9:45pm or so to watch Ireland win.  Then crashed. Well, after the ritualistic check of my blood pressure, oxygen level (which they read with a little thing that harmlessly clips onto your finger), pulse (same clip), and temperature.  The do the same again at about 2am.

Listening with Gadgets

Elana sync’d my old iPhone to load up a bunch of podcasts (some suggested by friends).  I’m enjoying “No Agenda” with Adam Curry and John C. Dvorak, along with some other bits like NPR’s Wait Wait Don’t Tell Me.

A friend Nic loaned me a tiny iPod Touch with a wild mix of music loaded up, most of which I’ve not heard before.  I’m enjoying most of it, and find myself puzzled by some. 🙂  The iPod Touch is clipped onto the back of the old-fashioned Sony Walkman for listening to the radio.

Irish Tradition

We’re given the opportcunity to have tea multiple times during the day.  I’ve started asking for apple juice instead at the mid-morning and mid-day offers.  It just seems like a better idea for my system to be empowered by vitamins from fruit juice, as oppposed to tea.  (Even with its caffeine benefits, since caffeine would reportedly help increase my natural cell production.)

This morning, a lady came by asking every patient, “Good morning, would you like to receive holy communion?”  I hadn’t noticed the small cross on her blouse.  Not necessarily a multidenominational hospital; I imagine the vast majority of the people in the hospital are practicing Catholics.  (Well, except for the guys in the beds around me, at least.)  She was very nice, and took my, “No thank you” with courtesy and moved on.

It’s Nearly All Star Wars Legos

The boys were able to come in for a little bit today.  Fun conversation, and fun to watch them.  They brought a Star Wars Lego Encyclopedia (I think) with them, and they each went back and forth pointing out what they’ve got or what they want.  We finally put the book away to encourage them to tell me about what they’d done over the week. 🙂  At one point, Patrick asked out of the blue, “How do you get leukemia?”  I said I don’t know, and we don’t know how I came to have it.  That seemed sufficient for him, but it’s interesting to wonder how his 9 year-old’s mind is processing all of this.

Written Word

E brought in a book for me, and a copy of Discover magazine.  I’m interested in seeing how different it’ll be to read printed words versus those appearing on the computer screen.  I also wonder if my eyes will be less tired trying to read, or if it’ll end up feeling the same.

Between the book, magazine, and my efforts to play Sudoku, I’m covered on the non-gadget front too.

Closely Knit

Today Elana gave me my first lesson learning how to knit.  This is big, since I’ve never even considered touching it before.  I cast on, sorta, and managed to knit a few rows, sorta.  We’re going to try again tomorrow; I think I need to understand it a little bit more, but I know from today that I can do it—I just need to try more. 🙂

My hair’s begun to fall out.  Well, some falls out, but more to the point I found it’s simple to pinch a bunch and it just comes out.  (Cuz of the Chemo.)  Today Elana borrowed a great hair trimmer from a friend, and also brought in our beard trimmer.

With the help of the nurses finding big green plastic bags to collect the hair on the floor, Elana did a great job trimming my head down with the #2 setting on the trimmer.  Apparently I look like an Army recruit, sans the uniform or gear.  The hair on my head is greatly reduced, so t least the volume of what’s still coming out will be less dramatic.  Same for trimming the beard.

Had a nice shower after that, in which some more hair opted to go swimming, but overall it wasn’t quite the dramatic experience I was expecting.  It just looks like I went to the barber and said I wanted to have a summer buzz-cut to make it more comfortable.

Keep Healin’

Another positive visit with the doctor this morning.  They (consultant doctor + team of like 3 or 4 other doctors) are happy with how things are going well.  Since I’ve now gone a number of days without a fever, they’re going to start taking me off the antibiotics and see how that goes.  She said the absence of a fever suggests my chest infection is going away, if not yet fully gone.  Next week the’re going to be watching my numbers looking for them to go up.

I don’t know how long it’ll be until I actually get out, but she said once I was, I’d be out for a week or more (depending on the delay of getting me in on a bed—apparently they’ve got a waiting list going).  Then I’d come in for a 7-day chemo treatment cycle, in contrast to the 10-day chemo I received at the start of this month.

No Gym at the Hospital

I’ve lost some weight recently, down to about 82kg (approx 179lb) from 85.5kg (189lb) when I started.  I’m trying to make sure I eat more for each meal to see if I can counter that.  e.g., I asked for a yogurt to have after dinner tonight (aka 4:30-5:00pm).  One theory the nurse has for my changes is that I’ve been retaining water over the last week or so, and having expeled a decent amount, the weight difference appeared.  I’ll probably meet with a dietitian next week about how to fix it up a bit.

They track everything; I keep a running list of what I’ve had to drink.  Since I was last asked (every few hours), I’ve had a glass of water, one box (189ml) of milk, and a cup of tea.  They use these numbers to try to match the volume of output—in the bathroom we each have the equivalent of a big plastic measuring cup which we’re to use for pee instead of the toilet.  I’m curious how they resolve discrepancies—e.g., they found I was outputting more than I was taking in, but I’m not sure how easy it is to do that.  (Aside from messing up my list-keeping.  And most of you know how I thrive on that. 🙂 )

Yesterday a physiotherapist came by to check my chest (fine) and also answer some questions I had about what sort of exercises I can do.  They’ve given me a sheet with a Physiotherapy Exercise Programme (Irish spelling), with six specific things to do—ideally all of them each day, but only if I feel up to it.  Things like raising and lowering legs, standing up on the tip of one foot, etc.  A lot of it is similar to the physio I got as part of recovering from the twisted ankle/strained ligament I got over the summer in Maine when I stepped into an invisible hole in the ground in the woods.  Anyway, this morning I did a few of the exercises, which felt really good.  Movement seems so much better that staying stationary all the time.

Staying Amused

Tonight Ireland’s football team is playing at 7:45pm against Macedonia.  I’m hoping I’ll have the energy to stay up and watch it. 🙂

In the interim, E brought in a Sudoku book we have.  I’m going to try doing some of those on paper, and see if there’s a difference in how my eyes feel compared to spending long periods of time reading email or writing.  (I’ve got a Sudoku game on my Aldroid mobile phone, but my eyes get tired after playing for about 15-20 minutes.)  I have a hunch regular paper will prove much more accommodating.  (Now if only I felt as comfortable writing on paper as I do typing…)

Stayed up til past 11pm last night, as an experiment.  Was woken as normal at 6am for my blood draws, which means I probably won’t try to stay up that late again. 😉  Kinda tired this morning cuz of doing it.

Good visit by my doctor this morning…my fever has been holding off for a decent bit.  There’s a system called growth stimulation of white cells which they were considering for me, but since my numbers have been behaving properly and the fever has held off, they don’t think it’ll be necessary.  She believes I’m doing really well.  She did say the stable absence of fever may only go for 4-5 days and then could return, but we’ll see how things progress.

I had a chest X-ray at 8pm last night, but they’ve not yet had a chance to compare it against the one I had a week or two ago.  Based on what I’m feeling, I expect them to see the infection has reduced itself.

No IV next to my bed right now, and no tubes.  I expect it to return for doing platelets and then regular blood transfusion, but for the moment I’m free. 🙂

Eyes still improving, ever so slowly.  I know they’re much better than a couple of weeks ago, that’s for sure.  I’m just waiting patiently for them to be able to focus together.

Today was more of a downhill than a flat or an uphill.  He won’t say it, but when I got in, he was tired and not so hot.  Didn’t eat his lunch, took a nap instead, which he hasn’t done for a while.  Headache, and slightly overwhelmed by people talking to him.  I was getting worried, because something there was triggering for me.

I talked to both Nurse Sm and Nurse L about it.  Nurse Sm (there’s a lotta nurses whose names start with S!) said that of course I’d think something was wrong, this is kinda how he was when he came in the first day.  And she was totally right.  A good nap, some meds for the headache and a nice juicy orange and he was looking better.

Beyond that, quiet enough day.  Just talking and figuring things out, no big stuff.  I didn’t get the numbers for today (I.KNOW!  What is WRONG with me?!) but will get them tomorrow.

Today’s Shoutouts: Nurse Sm, for making me chill out; Viv, for the softball game for P; Claire P for the deeelish dinner (the boys had 3 bowls each!); and the lovely Roseanne, for helping me with my knitting needles.

Can’t believe how much water I drank yesterday.  I’m usually putting still water into my cup  from a set of 500ml bottles.  In contrast, yesterday what they found for me was a full 2L bottle.  When I saw it, I was skeptical about the sheer size of it.  But, somehow, I finished it off and moved on to another 500ml bottle.  Needless to say, I had a few wakeups to go to the bathroom during the night.

My IV isn’t doing fluids as much, in part because of the amount of water I’m drinking.  I’m also getting two potassium tablets which I put into a cup with about a 1/2-cup of water to make it dissolve.  (Like the Vitamin C ones we use at home.)  Potassium’s the other thing the IV usually did.

There’s a television mounted in the ceiling just past the end of each bed.   They have it set up so you can plug headphones into the wall next to to your bed to have it on without the others around you listening to your show.  BUT, the 3mm headphone jack next to my bed appears to have been pushed into the wall, so no such luck.  (S’ok, if I turn on the news or something I just keep the volume down at a reasonable level.)  I asked male Nurse B to  submit a request for it to be fixed, which he said went in fine.  (That was around Monday, I think.)  Hope they fix it before the weekend.

Not a big appetite for lunch, though I’m saving the two oranges for later.  Did a little nap his afternoon, which I think helped a bit.  Also ate an orange, at E’s encouragement, which had come with the lunch and that apparently made a big difference in how I was behaving and how I looked.

Had a headache this morning which wore off a bit, but didn’t go away.  They have me some meds which have really helped.  Yesterday, I had a stronger headache I believe happened because of looking out the doors at one end of the hall at the bright light in the sky.  The afternoon was another, which could have been the same, or may have been a side-effect of a bottle of cola and chocolate bar which I tried.  (Reportedly the caffeine can contribute to bone marrow growth.)

The head’s improved now, with only a small echo of a headache.  I’m being careful and limiting my laptop screen time since that’s making my eyes work really hard.

Have a chest xray at about 8pm tonight, which will hopefully show further improvement to the chest infection which was seen there last week or the week before.  It would’ve been now, but I’ve got a blood transfusion going which has about 2 hours yet to finish.  Glad I’m not too eager to sleep. 🙂

He’s getting stronger, def.  The boys visit was great, but I think it tired him more than he thought it would.  The collective energy of a 4yo and a 9yo is pretty intense.  Other Nurse D (we have two Nurse D!) was lovely to the boys, and they liked being there.  Only a half hour, but I think we’ll wait a while on any other visits…

We walk the ward, back and forth.  It’s about double the length of our house, so not very big.  I beg each day to let me bring him outside, or even downstairs.  Nope, not even with a mask.  “He’s neutropenic, nope.” /sigh

While he was up this morning, he had the window blind open for a while, then the sunshine started to hurt his eyes.  Wondering if I should bring in his sunglasses….

His numbers haven’t really shifted this week.  He got 2 pools of platelets while I was there today.

WBC: 0.4

Hg: 8.9 (that’s with no blood for about 16 hours)

Platelets 31

We’re adding a new number here: Neutrophils.  This is the biggie now…right now they’re at 0.0.  They are the numbers we want to see coming back up, slowly but surely. I don’t know the range that they’re looking for, but that’s now the number to concentrate on.

As for how much longer, we just don’t know.  I thought it would be another week or so, but I was told that it could be another 4 weeks.  It all depends on the neutrophils and when everything starts to recover.  B is getting the blood because his marrow isn’t making blood right now, and they have to keep the levels right (same with platelets, if even higher to protect against infection and hemorrhaging). The docs said that they’re expecting the numbers to start to rise in the next week or so, but if they haven’t started, they’ll give him a bit of growth hormone to see if that kicks the marrow back into gear. One doc said that caffeine is a marrow stimulant, but I don’t think I’m bringing him any triple espressos.

So for now, we sit and wait.  And wait.  Gin rummy is still fun.  We were working on a project today that turned out to be nothing, but hey, it exercised our brains for a bit. Books are still out right now.  I might teach him to knit, if he doesn’t watch his fingers….

Today’s shoutouts: Joanne, for the dinner (and cause she said she wanted a shoutout!); Nurse D and her lovely curly hair, no matter what you others think; Miriam and Roisin for coming all the way out here with a cottage pie for the freezer; and Magda who gets a perpetual one, cause she’s my biggest supporter right now, and I hope we can be hers (kick butt in volleyball!!!)

I had a great visit by *both* boys this morning; Thanfully, Elana was able to get them in (despite horrid traffic) for a little while before having to get them to school a little late.

Like any 9 and 4 year old boys, they’re not always sure what to talk about, but they’re able to share information when prompted and volunteer random unsolicited information, too. 🙂  But the best part is just seeing them being themselves, interacting, talking, et al.  We’re unsure how often I’ll be able to see them (maybe not again for couple of weeks or more), so I’ll relish the visit for a while.  I’m wearing a “Happy St Patrick’s Day” pin badge given to me by Patrick, which I’ll keep on for the day.

My fevers have been improving a little … last night I got a small one, and started to feel a little cool, but in contrast to say a few days earlier, I didn’t have the shaking shivers and chills.  I’m hoping this trend continues.

Had blood samples taken at 6am this morning, like normal.  Amazing how much blood they’ve taken out of me over the last few weeks!

My radio routine in the hospital is starting to take shape, mirroring the habit I use while working at home.  Morning Ireland on RTE Radio1 starts the day til 9am, then I switch over to Radio Nova 100.3 for awesome music for an hour or so.  Then I switch to listen to Tom Dunne on NewsTalk 106 from 10-12.  When Tom’s done (ha ha, apologies to Tom), switch back to Radio Nova for the rest of the day.  This doesn’t mean I actually listen to the radio this much here—it’s just the pattern of time and station choice.

Just head that Michael Stipe of REM composes songs on his mobile phone.  Some time ago Bono lost (?) a laptop with lots of lyrics and such on it; I wonfer if Michael S had any sort of encryption on his phone?  A decent password?  (The intelligent thief would open the phone up and get the memory card out of it to put into a stronger reader.)  I’m sure he’s well aware of the risks and has some way to protect his work.

Looks like a beautiful day outside; I’ve got the window blind up just enough to be able to see the bay (sitting up in bed), but keeping the bright sunlight from straining my eyes.  I like the diea of the boys being able to play outside and a) have lots of fun being outside, and b) expel tons of energy so they go sleep early and for a long time. 😉

Listening to “Morning Ireland” on Radio One using the Sony Walkman.  Easier than trying to “watch” the news on the TV, and I came to the realization that I’m getting all of the information in audio form.  With the TV version, they use the display for part of the content, which means I’m only seeing part of what they’re putting up there.  How funny, the innovative nature of the Walkman when it was first introduced and yet it still functions well as a product decades later.

They did a blood transfusion at around 6:30am this morning cuz I didn’t have a fever, and still don’t.  Woo hoo!  It’s seemingly random when I do or don’t end up with one.  This morning made the better choice. 🙂

Got another eye exam  this morning.  The doctor said there are two things which can cause my conditiion, either the leukemia or the chemo combined with the white cells.  He said mine was the latter, which was good because that case will heal itself.  (Confirmed again!  Yahoo!)

While waiting for the eye exam, I had an interesting chat with a 60-something guy sitting next to me.  He had very strong opinions about how hospitals and doctors’ offices still can’t seem to schedule anything properly (his words), yet they still call you in/bring you in for a particular time.  He’s got a plan on how to analyze the performance of patient visits to come up with a predictible model which could be used to mre accurately schedule appointments.  He could make a fortune creating a business service specializing in this, particularly if he could make it within 10 minutes’ accuracy consistently.

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.

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.

Nini.