zen.org Communal Weblog

Today was my followup bone marrow sample; the result of this sample decides the next step in my course of treatment.

In contrast to the two previous times, this version was only half the effort: the doctor did the first step, getting the liquid bone marrow (a “bone marrow aspirate“) and put it on the microscope slides.  He saw (and showed me—I have a picture, but as with the biopsy photo, I won’t post it for the queasy) a nice grouping of the cells on the slide, an indicator he got really usable samples.  The previous ones looked kind of like a flat liquid, meaning there weren’t any “particles” (doc’s term).  This made them have to do the biopsy—getting the physical marrow sample.  (My post before was technically incorrect because they’re actually two different things: in each of the previous two, they did a aspirate first then the biopsy second.)

Don’t know if we’ll hear the results of the sample today or tomorrow—we’re assuming tomorrow (Tuesday).  Today’s bone marrow exercise was half the time with almost no pain at all.  Amazing!

You know, if the US gives you the equivalent to a couple of beers with your local anaesthetic, I’ve been seriously considering convincing Ireland to let you clutch a hip flask of good whiskey as your way to make it through the experience.  (Instead of your pillow—a childhood habit reappearing as an alternative to clutching a piece of wood between your teeth.)   That way, each draw they make of my hip bone’s liquid marrow is matched with a hefty shot of Belvenie Doublewood 12-year whiskey.  I’m sure there are more such procedures in my future, but two in a week is enough for a bit, I hope!  And by then I’ll have forgotten about my booze solution.

Rotations, just like on TV

Today a bunch of student doctors and nurses changed as they finished their previous collective rotation and moved on to the next.  A really nice Dr M from my team of doctors is moving on to radiology, I think; haven’t seen/met his replacement, if there is one.  More fun is the switch in the student nurses (that’s not what I meant, you prude).  There are a few 4th-year students joining some of the student nurses who are just 1st-year.  The 4th-year nurses are a little more polished, a little more clear in what they’re doing.  And, most interestingly to me, they want to help the 1st-year compatriots, doing the equivalent of teaching their younger counterparts.  Very impressive.

Wake Up, Soldier, It’s Already 05:50 Hours

The schedule I’m expected to maintain in the hospital is a little extreme.  Most people crash out at a reasonable 10 or 11pm, and don’t have to rise until 7am or 8am in the morning; maybe 5am or 6am if you have to be in for an early start.  At home, we’d set our alarm for 7am during the week to get the boys to school.

I’ve learned something while staying here: the nurses and caterer—all very nice people, mind you—have a masochistic idea of what a “wake-up time” should be.  I’m usually asleep 9:30-10:00pm.  Get a few hours of rest, then—WAKE UP!—around 2am the nurses have to check blood pressure, pulse, oxygen, and temperature.  Ok, fine, back to sleep by 2:30am—WAKE UP!—and back awake at 5:50am so they can take like six separate blood samples.  (Pretty quick with the Hickman central line.)  Again, checking blood pressure, etc., and just to press the point, they also have to check our weight.  By then it’s just about 6am.  Fine, all done—WAKE UP!—no, just before 7am is the breakfast tray, with breakfast following about 15 minutes later.  Drink your tea or juice, eat your porridge or cereal or toast or yogurt.  Then you can crash again, if you’re able to pull it off.

Not very likely. 😉

I had to reinstall Firefox 3.6.15 on my laptop (3.6.16 and 4.0 both crash when presented with a weird SSL certificate from the hospital’s Cisco wireless box).  As I went along trying to figure out a way to avoid the bug, I went with a fresh user profile.  I got my bookmarks via Bookmarks -> Organize Bookmarks… -> Import, pointing it at old profile under

C:\Users\Brendan Kehoe\AppData\Roaming\Mozilla\Firefox\Profiles\ngg032uh.default

But I still had to redo all of my Add-Ons and such.  And later, when I decided I wanted to use Firefox 4.0 most of the time (much faster!), I needed the same list.

My list of must-haves, written down here so I won’t have to make as much of an effort next time I have to do this:

1. FlashBlock
2. AdBlock Plus
3. NoScript
4. QuickProxy
5. BlockSite (to block the hospital wifi server at 1.1.1.1 which has a bad SSL cert causing versions other than Firefox 3.6.15 to crash; this way I can use Firefox 4.0 and keep 3.6.15 independently installed solely to authenticate on the wireless)
6. GreaseMonkey
7. GreaseMonkey user script Allow Password Remembering, which overrides ‘autocomplete=”off”‘.  That attribute appears in the HTML of the hospital’s wireless server authentication page. Without this, I have to manually type in the username and password required to be able to use the hospital’s wireless. This great hack makes it possible for Firefox to retain both and free me from having to type them in constantly.
8. Better Gmail 2
9. DownloadThemAll! (batch downloading)
10. Add to Search Bar (so I can easily add www.google.ie)
11. F.B. Purity

I wonder what I’ve forgotten? 🙂

Are there any I should definitely add?

After a really great weekend at home, I’m back in the hospital for the next steps in getting better.

The weather in Ireland this weekend was spectacular—a very nice bonus. 🙂

Home til Sunday!! 🙂 🙂 🙂

It’s a few days into my fifth week in the hospital.  Kind of surreal, the idea I’ve been here for that long—much less the concept of still being here for a still-unknown length of time.  Despite the little change in my surroundings (and discounting the first couple of weeks when I was feeling much worse), I’ve managed to keep myself occupied.  Whether it’s by spending time with Elana, doing puzzles like Sudoku, reading a silly novel, or listening to lots of music, I’ve been lucky enough to have found ways to make the time go by.  Add to this my plunge into learning how to knit, which is one of the most relaxing and enjoyable choices.

Today I had some fun new experiences which added a bit of variety which I hadn’t realized I really needed.   Elana asked a nurse and got permission for me to go for a walk outside!  I had to wear a duck mask, which appeared to be a stranger experience for everyone else around me, in comparison to how I felt.  My current theory is that many of the people who glanced up at me as we walked around were more convinced I was wearing the mask to keep them from getting exposed to some mysterious and horrible disease, as opposed to the real reason of protecting me from exposure to the germs of others.  The mask itself looks kind of absurd anyway, so it wouldn’t take much of an imagination to come up with all sorts of reasons for it to be there.

While walking around, I saw that people can get different kinds of coffees from the shops downstairs.  It’s been about 6 weeks since I had a cappuccino or latte—and there they were.  But because I’m still neutropenic, I assumed it wouldn’t be allowed cuz of potential exposure to who-knows-what.  Well, Elana trumped that one.  She spoke with the head nurse and it was OK!  (With the qualifier, “Only one, now…”  I told her after about age 30 I found more than one coffee in a day usually makes my heart rate go up, so I’ve held back from the seemingly limitless consumption in my 20s.)

Elana went downstairs and got me a large cappuccino.  I drank it slowly, enjoying every sip.  I even used a spoon to carefully get the last little bits from the bottom of the cup.  What a delight.

Body picking up all your waves of positive karma

My doctors (it’s a team, with one as the lead, so I think I’ll start using the plural) had planned for me to get a blood transfusion today because they’d noticed my red blood cell count had gone down slightly yesterday.  This morning, they saw it went back up over a 9.0 borderline count, meaning my body’s generating replacement cells and they could cancel the transfusion.  Cancel it!  Holy crap.

There was also a meeting this morning with the radiologist, analyzing my CT scan results compared to the initial one done shortly after I was admitted.  In the first one, they saw a chest infection.  In the second one, analyzed this morning, they only saw what was described as “a few residuals”.  The doctors who spoke with me this morning said they’re happy with how things went, describing it as having been an acute viral infection which they dealt with immediately with antibiotics.  They toyed with the idea of putting me back on an antibiotic to deal with whatever little “residuals” are remaining, but decided it wasn’t necessary because of the good state of my health overall.  One of the doctors this morning said, “You’re doing brilliantly.”  I know things change from one day to the next, so I’ll happily tuck that one away for today.

To add to this list, which I really find hard to accept in terms of trusting signs of real progress, I tried something different with my eyes today.  The skies of Dublin were overcast for much of the day, meaning light was more subdued than recent really bright sunlight.  So we tried drawing up my window blind, which I usually keep all the way down because of how quickly I can get a headache from the bright light.  I did two ranges of time with the blinds up, a bit around lunch and then most of the afternoon.  No headache.  We both think part of the sensitivity to the light is caused by the fact that I’ve been consciously avoiding the light since my eyes first having trouble during the chemo in early March.  I’m going to try out having the blind up each day, at least a little bit even on brighter days.  (I’ve also got a great pair of sunglasses on loan from a friend, which I’ll use on those brighter days to keep trying to increase my level of comfort.)

Stitching with rock ‘n roll

I spent a lot of time practicing my knitting this morning.  It’s still quite amusing to others around me—the nurses, doctors, even the guys who come and wash the floors with bleach mops twice a day.  A bunch of time was spent knitting my nice happy rows of 20 stitches while listening to rock music on Radio Nova, a Dublin radio station which plays great tunes (which you can hear via an online stream, too).  I choose to listen to AC/DC, Led Zeppelin, and Pink Floyd while staying proud how I made it through more than a dozen rows without a dropped stitch or yarn over, so I figure I’m plenty secure in my masculinity.

On any given day, I could be sitting in my bed or in the chair next to it. The sun will come pouring in the window, my really cool-looking sunglasses protecting me as I succeed in another properly-knit row of yarn, all of this accented by rock music pouring out of my headphones.  Normal image, right?

Perfectly good with me.

Today, Elana and I got to spend a nice amount of time together, helping each other process what we’d been told yesterday and get into a better mind-space.  Sharing jokes, enjoying knitting, and all sorts of other things gave us both some of the boost we needed.  All of the support from family and friends certainly contribute to this as well.  Even so, we’re each stronger because of the other.

Numb3rs up

Overall my cell counts progressed up still, which is a good sign.  For the first time, my neutrophils (the important white cells they’re most interested in) actually appeared with a non-zero value of 0.1.  If my doctor decides to start my second chemo cycle next week, those will go away, but right now I don’t care: there are some where there weren’t enough for the system to care before.

Going all dairy-like

Because the small boxes of milk weren’t available, I got container of a full liter of milk with breakfast.  I accepted this as a challenge: instead of just using a bit for cereal and tea, and giving it back, I decided to drink the whole thing.  I need to gain weight anyway.  Surprisingly, it didn’t take very long.  Like one Sudoku puzzle.

Given that idea, tomorrow morning I’m going to have 4 or 5 yogurts for breakfast.  (They apparently have tons.)  I’ll either hate it, or it’ll be happily filling.

Cross-matching with blood donors

This afternoon, they did some blood draws to use for doing cross-match with donors for a planned blood transfusion tomorrow.  (First transfusion in more than a week, showing my body is using the red cells well.)  I think concept of the matching is really cool.  It makes perfect sense, having actually thought about it—it’d be silly for me to expect a big shelf full of bloods of particular types and where they could just pull off a bag and go with it.  There are other specific criteria (which I don’t know) to make sure it’s exactly the right match.

I asked one of the nurses what the correct term is for the container used to hold blood involved in a blood transfusion.  (Same kind of thing used to hold basic fluids, though a bit stronger apparently.)  Kind of like the term “duck mask“, they just call them a “blood bag”.  I wonder if there’s a different name used in America or other English-speaking countries?  (Nudge, nudge.)

Guys can knit, I’ve got proof

Today was a knitting victory.  Four or five rows, twenty stitches (or “20 sts” for those in the field), all correct!  I’m not dropping rows stitches (technical term) as often, but I still slip up and do yarn-overs relatively frequently.  A good friend has praised me for this, saying it’s a sign I’m already making progress on learning how to knit lace.  Can’t offer that this was my plan, but I’ll happily accept this as a side-effect.  But maybe I’ll get the basic act of knitting  down before consider actually creating lace.

Not to say I won’t try, someday.

FYI, I’ve added links on the bottom of the blog page so you can get to pages of older and newer posts, as well as the first post in the category.

Unfortunately, the tests weren’t clear-cut enough for the doctor to bake a definitive decision on the next step yet.  So we hold steady and they’ll do another bone marrow biopsy on Monday the 11th (argh!), with more information sometime on Tuesday.  It was a bit of a roller-coaster ride as we processed the information, but now it’s a matter of a bit of a wait.

My fascination with really old clocks and their nice smooth ticking comes back to bite me in the biopsy-aching hip bone/ass. 🙂

This morning I had a followup bone marrow biopsy, the results of which will decide what the schedule is like for my first exit from the hospital.  (Go away for some period of time, unsure how long, then come back for the second round of chemo.)  Thump thump, thump thump—I’m trying to accept that I’ve no idea what they’ll say, so there’s no point in trying to predict it.

I had a biopsy sometime in the early part of my stay here; I was feeling like crap, so I wasn’t sure of the date.  (Elana remembers it’s was the morning of the day after I was admitted, with results of identifying what kind of leukemia I have and chemo started that night.  Good memory!)  Anyway, that biopsy hurt a lot more than this one, maybe because of how deep they went with the local anaesthetic, maybe some other reason.

I learned that in Ireland, in contrast to the US and possibly other countries, they always use only the local anaesthetic for a bone marrow biopsy, since they don’t see the need to have the patient unconscious for the procedure.  (As long as they do a decent job with the local. 😉 )  Others, like muscle biopsies, do use a general anaesthetic.

The end result today was a bunch of microscope slides with the fluid from the bone marrow, and another container with a small physical sample of the bone marrow itself.  (Like a tiny red-colored peppermint stick, sort of.)

I actually took a picture of the marrow sample, because I find it absolutely fascinating, but after very little reflection, I decided it’d probably gross out way too many people if I actually posted it. 🙂

The results of these samples are what will help the doctors decide when I get to leave the hospital for some length of time—we don’t yet know how long—before I come back for my next round of chemo.  (As I understand, there can be a few.)

Skype just plain rocks v2

Derry and I got to have a nice long video chat today, using it for the first time.  We took advantage of the video and gave each other tours of where we were. I moved my laptop around so he could see my whole setup, and so I could hold it up to introduce him to the nurses who were working then.  (They loved the idea that someone in the US was on the other side of the screen.)

Our remarkably similar haircuts (heh) made me feel like I was looking in the mirror once in a while.  We got to talk about all sorts of things, which felt great.

We’re going to try to remember this as a resource now that we know it works.  I just have to make sure I meter my time so my energy doesn’t get sucked into the Internet tubes.

Apple could have an untouched market

One of the patients across from me (there are two) heard me say to the other patient that I’m a software engineer.  After my other conversation was done, he came to me and asked if his wife could bring in their Macbook—which the 3 year-old apparently dropped and made something stop working—and would I be able to say what’s actually broken?  I said of course, I’d be happy to.

It’s impossible to escape the inclination to want to help fix computers, even in as unique a place as a hospital.  You’d expect them to cure you of anything.

Being home was truly wonderful.  Time to go to sleep. 🙂