zen.org Communal Weblog

If my white cells go up this week (now 22 days since the beginning of the 2nd chemo), as they’re expecting, I’ll get discharged for a couple of weeks. But we cannot get our hopes up, since we got so slammed down by things not being true before. If after a few days the numbers haven’t moved, they may do the bone marrow stuff to see if there’s anything “going on”. They’re still watching for me to have any sort of infection, which they said are usually first indicated by a fever (temp over 38.0C / 100.4F).

If I’m able to leave, after those 2 weeks (or whatever) have gone by I’ll come back in to the Day Ward so they can do a bone marrow aspiration (the liquid) and bone marrow biopsy (scraping some of the jelly-like marrow). They try to hold off doing them while the growth stimulating hormone shots are happening because they can skew the results. The bone marrow tests are done in order to verify that I’d actually be in remission—or find I’m not. No idea about so many different parts of this.

Ker-thunk, down one click

Platelets were 16 yesterday, moved down only by 1 point to 15 today. A chat with the doctors today had “anything over 10” being the line they’re watching in particular. I was intrigued—perhaps more than them—at the movement being so small. But sometimes those are helpful, too. (Said the tortoise to the hare.)

Let them eat cake?!

Yesterday I got my long-awaited piece of chocolate cake. I forgot to include the news yesterday; oops! And the proof:

Tonight’s experiment was ordering the other idea: carrot cake! And it arrived. It’s a muffin, not a cake, but I don’t care; carrot cake, carrot cake muffin, either way it’s a treat I hadn’t know I could get before now.

Knitting milestone achieved

For those of you playing along, last time we spoke I was anticipating my first journey into the dark underworld of knitting with more than one ball of yarn. I think it worked—mostly. I’ll ask Elana to audit it when she’s next in to visit, but for the moment I think it’s okay. The book Knitting Without Tears which E was kind enough to bring in had enough—I think—to get me through the scary-looking doors to the next frightening level of my scarf project. No, I don’t know how you can start to twist text about knitting onto the possible path of a horror story.

The knitting needles quivered, almost by themselves. Their points twitched ever so slightly under her eyelids, those small bits of skin being pulled up and away from her eyes. Now wide awake, she found herself staring straight into the face of…

Oops, sorry about that. I think I dropped a stitch.  Or something.

Nevermind.

Forget I even mentioned it.

Yesterday my platelets had gone from 9 up to 16 after one transfusion on Saturday. Today, the count only moved from 16 to 18 after Sunday’s transfusion. Go figure. But they didn’t do another today. The haemotology resident said she’s happy enough with the count at 18, explaining how they use the count of 20 only part of making the decision—the other part is the condition of the patient. Since I don’t have any infections (she made motions to her face, stomach, and below the waist), haven’t had a fever, etc., it’s not as necessary to add more platelets, at least today.

My magnesium level is a little bit below the desired range (I don’t have the numbers handy).   Magnesium does all sorts of stuff inside your body like avoid muscle contractions (twitches), bone growth and health, and keeps your heart happy

To help bring it back up (the chemo side-effect list is wide and varied), I’m going to be given an oral magnesium supplement three times a day. It’s a little packet of white powder which I stir together with a couple of mouthfuls of water. It tastes slightly lemony and its smell reminds me of vitamin supplements from Trader Joe’s which we used to take when we lived in California.

Stay informed

For two months, I’ve not had to have any money. Everything is taken care of, food is all provided, snacks (like cheese and crackers, a muffin, some toast, whatever) are there for the asking. So it’s never been necessary to keep any cash.

On Sunday when Elana was visiting, we walked downstairs together so she could have some lunch and I could see human beings outside of the ward. I bought a copy of a newspaper (the Sunday Business Post) and read it after she left for the day. It was really cool, actually, relaxing with a cup of tea and reading the paper. One of those things you don’t realize you miss until you’re exposed to it again.

So at my request, E left some money with me so I can, with a duck mask and the permission of the nurses, walk downstairs again tomorrow and get a newspaper. Maybe even a cappuccino on the way back, to drink up here while I look at the paper. It’s in a different place, for different reasons. Regardless, all of it, this experience of the familiar, still taps the places in my mind which bring a sense of comfort on contact.

Knitting milestone

I’m only a few stitches away from being done with my first ball of yarn in creating my first-ever home-made scarf. Tomorrow’s exercise will be properly bringing in the second ball properly so they just flow together and I can then keep going. There are three of these barns of yarn in total. I bet the end of the scarf representing the first third of the project (beginner) is going to look quite different from the final third (beginner with increased confidence).

Nothing as much fun as a day where you know you over-did it. 🙂

I started by reading some of the awesome graphic novel Watchmen, which has been on both of Elana and my reading lists for ages, and we finally got a copy earlier in the year using a gift certificate.

Then I spent some time working on a technical project just for fun. Because that’s always high on my list of fun. (Insert geek cackle here.) Elana was able to come in to visit, and, after eating, I could go downstairs (with a jacket, and a duck mask, and a hat) with her and chat with her while she ate some lunch.

When we came back upstairs, E and I chatted about the technical project I’d focused on in the morning, and we did brain-storming together. ( I’ll share more if/when it materializes into anything. 😉 ) Then I rested a little while she knit and we just relaxed and talked. It was such a nice way to let the day go by.

Basic medical math

My numbers today had the platelets go from 9 yesterday morning to 16 this morning; not a high jump, but still a jump. Today I got more; we’ll see where it lands in tomorrow morning’s yam blood samples. I’m currently getting the second of two bags of blood because my Red Cell Count (RCC) was at 8.8, just under the trigger of 9.0. Those elusive white cells were at 0.1 for the last week, and will probably hang that way for another week.

I’m also hooked up to get a 12-hour slow drip of fluids. We noticed my arms had gotten slightly scaly when pinched, which I guessed was related to a combination of weight-loss and dehydration. (Despite all of the water and tea I’ve been drinking.) I mentioned this to the resident (doctor) who’s on a 3-month rotation in haemotology, and she’s prescribed the fluids to help it.

Little food secrets

I’ve been told by a nurse I won’t identify that there’s slice of chocolate cake, sealed in a peel-opening package, which I should be able to ask for as part of my dinner (lunch) or tea (dinner). I’m going to give it a try tomorrow, and will share a picture if it works.

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.