zen.org Communal Weblog

April 21, 2011

Hospitals: A Different Taste of Social Networking

Filed under: — brendan @ 19:50 IST

(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.
Picture of front of obs machine

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:

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

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April 20, 2011

Home for the Day

Filed under: — brendan @ 21:34 IST

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.

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April 19, 2011

One Bourbon, One Scotch, and One Hormone

Filed under: — brendan @ 19:25 IST

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.

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April 18, 2011

Living on the Edge (Free game piece inside each box)

Filed under: — brendan @ 19:38 IST

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.

Irish Hospital Patient Discharge PDF

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

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April 17, 2011

Kick Back, Relax

Filed under: — brendan @ 20:26 IST

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 shrimpNom 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.

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April 16, 2011

The Bell Rings—Round 2 Starts For Real

Filed under: — brendan @ 21:39 IST

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…

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April 15, 2011

Good Man Yourself

Filed under: — brendan @ 16:45 IST

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.

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April 14, 2011

No Fair, I Felt So Good

Filed under: — brendan @ 19:29 IST

Day 3 of Round 2 is showing the more clear-headed me all sorts of things about the side-effects of getting chemo.  Last time, I wasn’t quite as with it (aka much more sick), but each thing I told Elana today about what I was experiencing solicited a nod of recognition.  Fascinating, really, how much I didn’t really retain.

In no particular order, today has presented me with all sorts of things which are perfectly normal to accompany my treatment:

  • A couple of places on each of my shins have areas which hurt like a bruise, without the visible spots…they send a line of pain up the shin when I walk.
  • Amplified fatigue in comparison with yesterday.  I did far less than normal today, and usually just lay down with my eyes closed.  I took a 1-hour nap in the middle of the day, and also slept for a bit while E was here.
  • Bodily function decides to get its chance to fool around, with the age-old cure of prune juice not really helping resolve it—nor has a bit of medicine, either.  I wonder why I’m hesitant to actually use the Other-‘C’-Word?  “TMI” I think is the explanation.  At any rate, it’s a current side-effect.
  • Seemingly early compared to last time (I think), bits of the remaining hair on my head and/or in my beard are starting to flee seeking their missing family members.  I haven’t got the heart to tell them the absent ones were cleaned up in the shower ages ago now.
  • While my mouth is ok so far (fingers crossed), my lips are becoming chapped.  Even with the Burt’s Bees Honey Lip Balm.  Go figure.
  • Breakfast went ok, but I had little appetite for lunch, eating only half of what was actually on the plate and didn’t even touch the soup.  An interesting contrast to the last week and a bit.
  • But then, just to make things a little more black-and-white, dinner didn’t go well.  Add nausea to my new list of side-effects.  I don’t know yet how much of a recurring problem this one’s going to be.

It’ll take a good week, as I understand it,  for me to be able to start heading back toward the much healthier version of me.  The napping will make the time go by, I imagine.  As such, there may be a gap or two between blog posts, depending on (a) how I’m feeling physically, and, more-so, (b) how coherent I am to be able to write about what’s going on.  During the chemo and up to a week after it, at least—Elana knows better than I do—it also seems to slow my brain down a bit.  I’m betting the fatigue is behind that one.

But I’ll still find little parts of the day when I feel well enough to keep working on my knitting.  Might as well go with something that’s naturally relaxing, right?

P.S. The two people across from me are competing on how loud they can get their TVs.  I want to find a way to introduce them to the headphone jack on the wall next to each of their beds.  I’m open to suggestions. 🙂

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April 13, 2011

Cytotoxic, Baby!

Filed under: — brendan @ 19:55 IST

While the nurse was doing his job (cool mix of male and female nurses) giving me one of my three doses of chemo this afternoon, I noticed something on the label of the container of the Kool-Aid liquid:

Cytotoxic!  Use with caution!

This is some magical liquid which would hurt your skin, but can be inside your veins with no worries at all.  The nurse wears thick blue gloves and a clear plastic eye shield.  I get a thick piece of gauze to protect the skin on my tummy.

Sure, it’s all fun and games until someone gets cytotoxic fluid on their flesh.  Luckily, I’ve got a fleet of highly skilled nurses taking care of me. 😉

Hey Buddy, Remember Us?

The silly version: A couple of the more minor side-effects of the chemo came by this morning just to remind me they’d been here before, when I was much weaker.  Their capo famiglia, Mr. Leukemia, was concerned about noticing some armed chemo being around.  I feigned ignorance and let them go away.

The more descriptive version: I actually woke up feeling fine, but just after my shower (done solo without E having to be here to help me out, like she did for the first month+ I was here—woo hoo!) I realized my tummy was feeling a little upset.

About an hour later, around 10 in the morning, it was like someone put a thick winter jacket on my shoulders to weigh me down—fatigue came flying in and hit me with a wallop.  The nurses gave me some Motilium which settled my tummy, and as I relaxed and chatted with Elana, I recovered a bit of my energy for the rest of the day.  My ability to be sitting up typing this right now, and not crashed out to bed early or done a nap in the late afternoon, are evidence enough to me that something let me get past that, at least for today.  I know the fatigue in particular will hang around a bit more forcefully as the next week or so goes by.

Culture Differences Abound

Each day, we’re asked what we’d like for our dinner (lunch!) and tea (dinner!) tomorrow.  I’ve learned some key tricks, many thanks to Miss M the amazing person who does the catering service for our ward.  When she’s out for two days, you really notice her level of skill when her stand-ins make mistakes wide and varied—admittedly, I can only know they’re mistakes because I’ve had five weeks of experiencing the whole process.

She’s taught me some ways to manipulate the system to the benefit of the patient.  Just two of these secrets:

First insider hint: say “please add ‘with veg’” for every entree you select—for either meal.

More than 50% of the time, unless you’ve asked you will not get any form of vegetable with your meal.  Seriously.  You’d think a place like a hospital would want you to have a nutritious meal.  Sometimes the food’s decent enough, other times it’s excessively starchy with little else to hold it up.  But at the center of it all is the fact that they don’t think vegetables matter.  And, to boot, if you’re specific—perhaps, “with peas”—then you’re screwed completely.  Apparently if not enough people ask for a particular vegetable, the kitchen staff effectively say “feck it” (a phrase regularly heard on the radio in Ireland) and not only don’t give you peas, they don’t give you anything at all.

Exhibit 1: tonight’s tea—dinner–supper–er, “Hamburger with gravy and mashed [potato]

Anti-Veg Exhibit 1

Second insider hint: don’t be foolish and mess with what everybody naturally wants.

First example: We get offered tea (the drink this time) repeatedly during the day.  Or coffee—instant, water-bathed, not-really-dissolved, I-think-it’s-leftover-from-a-meeting coffee.

Just to mess with the system, I spoke pure blasphemy: “Do you have any decaf tea?”

The nice man running around crying out, “Tea?”, reminding me of accordion-playing beggars on a commuter train, froze and gave me a look of sheer contempt.  I was a foreign being to him; something he’d never seen before and could not decide whether or not I was a threat.

“Um, no, I’ve just got tea,” he replied, and quickly fled down away from our group of beds to seek a safer place with patients who aren’t as abusive to him.

Second example: Ireland has a serious sugar addiction problem

Every list of choices for dinner (lunch!) includes a couple of offerings for dessert.  Something like rice pudding, a mousse, or (on very rare occasions) a piece of fruit like an orange or apple might be choice.  Second is always a pairing of something and ice cream—maybe jelly, aka gelatin without the trademark symbol for what most in America know, maybe some canned chopped fruit (again, rare), and always a little thing of vanilla ice cream.  (Which is bland and, if Miss M is not around, often melted because they put it in the fridge instead of the freezer.  Oopsie.)

Again, to screw with the system, today I told the nice man-who-is-not-Miss-M, “No thanks, I don’t think I’ll have any.”

He stared at me.  “No sweets?”

“No, thanks anyway.”

“But—you could have the rice pudding, perhaps?”

“Nope I think I’ll be fine without them.”

It took him a moment to compose himself before he could continue on to the patient across from me and actually get his job done.

Knit hacking

Elana has taught me how to purl (the opposite of the standard knitting stitch) and how to rib, which is a mix of the knit (K) and purl (P) maneuvers.  I’m still practicing, and finding I’m now trying to figure out how to correct my own mistakes instead of waiting til I next see E to show me where I’d skipped a step or let something slip by.  I’m not so ambitious as to try a scarf or hat or sock or, hell, a rag, yet, but I’m still having fun with my practicing—primarily because I can see I’m making little bits of progress from each time I try.

I’ve also signed up with Ravelry, the place to be for knitters, apparently.  A free  website which is a gold mine for anyone who knits, Ravelry is run by four people who have created the ultimate resource for anyone interested in knitting, whether they’re learning like me or they’re doing it as a day-job.

I’ve got no projects set up, no patterns in my queue, and my stash noting the exact collections of yarn I’m going to use is a big bare virtual box of nothing.

So far. All in good time.

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April 12, 2011

Round 2

Filed under: — brendan @ 08:42 IST

In the left corner: the remaining leukemia cells which think they’re too bad-ass to go away.  In the right corner: my next cycle of chemo treatment, a bit stronger than the first (“induction”) cycle.  The bell for the fight will ring sometime this afternoon.  I was told yesterday (Monday) afternoon about the results of the most recent bone marrow sample and their plans because of them, but needed to let my own mind process it for a while before trying to write about it.

The treatment will reportedly be a combination of three different chemo drugs done in parallel: two of them will be for 5 days, and the third will be for just the first three days.  Then on Monday, they’ll start injecting the growth stimulation drug which, as described to me, is to get leukemia cells to where the chemo can kill them.  (I don’t know the detail beyond that—and don’t think I necessarily want to!)

Because it’s a stronger—and different—treatment, the side-effects can be different from what I had during the first cycle.  Don’t know what if any I’d be susceptible to, aside from being (again/still) very open to infection.  It’s also the same sort of thing as the list which appears in incredibly small type on a bottle of headache medicine: there’s a chance these could happen, but who knows which?  So I’m staying focused on the reason they’re doing the treatment, not on what I could experience as part of it.

As you might expect, hearing I wasn’t out of the woods yet was pretty hard to process.  A couple of people from the team came by to talk to me about the decision.  Elana was also able to stay at the hospital much later than normal, directly thanks to our great friend Doug from the US, who was able to visit over the weekend on his way back on a work trip; he was happy to get the boys fed and into bed so E could stay for a while.  Amazing.

I think it’s sometimes hard to really understand, to actually see just how lucky and how fortunate you can be with the people who are in your life.  Your family and your friends make up part of who you are, whether it’s clear to you or not.

After the last 5 weeks, I have absolutely no doubt in my mind.

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