zen.org Communal Weblog

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

I’m home, for a day.

My doctor said she felt my good state of health was holding strong, and if I was interested, I was welcome to have the equivalent of a 24-hour pass to go home.  Home!

I’ve not had an emotional flood like this since what struck me when I held each of Patrick and Eoin immediately after they were born.

So I’m here til sometime tomorrow afternoon.

I’m so happy.

Today has been a pretty smooth day.  I did some reading and a Sudoku puzzle before Elana arrived for a great visit.  For fun (really), I knit more rows, and felt better about how I was doing it, despite mess-ups with names like dropped stitch and yarn-over.  S’ok, I’m going to keep trying.  After I’ve eaten my dinner soon, I’ll listen to the Drivetime news show on the radio while knitting.  You know, like most men do on a nice evening.  😀  They could; they could…

Hospital motto: Eat Early, Eat Rarely

Our friend Roseanne sent in a box of Innocent smoothies which are heavenly.  I just spent about half an hour sitting in the high-backed chair enjoying my cheesy novel, the rest of some yummy crackers left by my Aunt Mary, and another smoothie.  Perfect.  Now I’m listening to a podcast, No Agenda, while writing this up before my 4:30pm dinner.  I have no idea why the afternoon seems like a good choice for serving your followup meal of the day?  Though lunch is always more ample than dinner.  So instead I’m able to get small packets of crackers, cheese, and butter from a helpful nurse to eat around 7-8pm tonight, since there’s no way food at 4:30 is going to last til the morning. 🙂  (Particularly since I’m too damn tall and definitely need more weight.)

Oh yeah, the medical part

My doctor and her team visited and said they’re going to watch the count, and if on Monday it’s still not moved, they’ll do a marrow sample just to see if there’s anything going on.  (This part sucks because despite all the local anaesthetic, last time there were a couple of hefty pain jolts when actually drawing out the marrow.)  I don’t know yet what the plan will be based on those results.  My guess is trying growth stimulation. But they’re still taking confidence in my continued good health (fingers crossed), so we’ll see.

Hair is truly optional

A shower today freed me of more of the hassle of hair on my head and hair in (what was?) my beard.  It’s not all gone, but it’s getting pretty slim.  My military cut from only four days ago looks like a full head of hair and decent beard in comparison. 🙂  We’ll get another picture up soon for the fun of seeing the stark difference.  Honestly, I’m finding the hair loss hilarious: receding hair line worries entering my 40s seem truly inconsequential in comparison to the volume of what chemotherapy has pulled off—so to speak.

Today, my second day trying, I think I’ve got the basic part of it .  The knitting part, anyway; the “cast on” part, which is the first step in doing a project, is still difficult and I’ve got to get more lessons from Elana The Teacher(tm). Even though I mess up some little thing every other row, give or take, I got into the rhythm.  Now it’s just a question of practicing.  I find it an incredibly soothing thing to do, and in particular my eyes didn’t feel any real strain, in contrast to reading my book or typing on the laptop, both of which are limited in how long I can do them before I start feeling a bit of a headache or tired eyes.

Eggs for dinner ?!

Tonight I had scrambled eggs with toast for dinner.  Yeah, I know, I’m so Irish, born here, now lived here as an adult for 12 years, and yet there are still habits of this culture which surprise me.  On the hospital ward’s list for possible choices for dinner, every day, they always include Scrambled Eggs.  They tasted good, the toast was great, and the tea accompanying it was fine.  One nurse said it’s a change from the norm.  She has no idea.

Being rolled through a doughnut

This morning I was told I had to go for a CT scan.  Ironically, this was fine with me because it meant I was going to some other part of the hospital, and not staying in the same place. 🙂  In contrast to when I went for my eye exam at the beginning of the week, this time wearing the mask (a filtering half-mask, which apparently everyone calls a “duck mask“) felt fine.  Well, a little weird still, but no upset tummy.

I think the scan is used, in my case, to check the state of the inside of my chest to see if there’s much/any infection still there.  To do it, I lay down flat on a long (comfortable) board, with my head resting on a separate cushion.  A huge doughnut-shaped device with a big gap (like three feet?), there’s a part inside it which spins quickly.  I have to reach my arms above my head, and a recorded voice says, “Please breathe deeply and hold your breath.”  (Yes, ma’m.)  Then it slowly rolls through down the length of my chest, and the same voice then tells me, “Please breathe normally.”  (Thank you, ma’am.)  It’s less than ten seconds, and is reasonably comfortable—except for my out-of-shape shoulders which get really tired stretching my arms like that.

A tracing dye was injected through my Hickman central line, after they tried and failed to find a usable vein in either of my arms.  I’m not dehydrated, so they were just being unhelpful, I guess.  The dye makes it easier for them to identify everything, as was explained to me at some point recently. 😉

The Hickman central line went in on the second day I was in the hospital, since they need to do daily blood draws, used it for one of the chemo treatments, etc.  It’s an alternative to incessant needles in the arms and hands.  It’s a little intense, thinking about what the central line is actually doing (basically direct access to the heart through the Superior vena cava.  It takes almost no time for them to get blood out for tests, in particular.  Apparently it can (and will, in my case) stay in place for many months.  Patrick, in his first visit, asked about the incision which he saw on my neck, so I showed him the central line and explained it’s how they can get samples from me and give me medicine in a really easy, painless way.  I bet he’s long since forgotten about it.  But I think it’s equal odds I’m underestimating his remarkable memory—and how the minds of children work.

Skype just plain rocks

Had a great chat this evening with the boys, with Elana, and got to talk to our good friend Magda for the first time in more than a month.  Even got to say a nice hi to our neighbor Grace and talk about how today went well.  It’s all a really wonderful way to let my mind travel out of this place, even for a little while, and interact with people in another place.

Don’t forget your emotional side

A couple of people came on the first of what will be regular weekly visits to talk with me about the emotional/psychological side of all of this.  I get the impression it’s part of a new study or service, since I’ve been here for more than three weeks and you’d figure such a thing would make sense to do earlier than now. 😉  Anyway, they’re part of a division focusing on psycho-oncology services to help people cope with cancer before, during, and after treatment.

I’m not sure what to expect from that part of it, but it’s nice to know there are further resources there.  They had a sheet asking me to rate from 0 (none/low) to 10 (severe/high) my state emotionally, related to anxiety, and other stuff.

Each time I see “oncology” on a nurse’s ID badge, or having heard the same word this morning, my TV-laden mind thinks immediately of Robert Sean Leonard’s character on the TV show House. 😀  (I’ll watch anything which includes his acting.)  There are better ways to understand a word, I know, but at least that more difficult one has a really interesting twist to it (interesting to me, at least).

How to relax

Elana got a high-backed chair so we could both sit in chairs while I ate my lunch today, instead of eating it while “sitting” in bed.  It was a real treat, and I’m growing fond of using the chair.  (I’m typing this while sitting in it now.)  This afternoon, I did a Sudoku puzzle while listening to music on the iPod loaned to me by a good friend Nic.  Mentioned before, the music is a cool mix of a lot of stuff I’ve never heard before, and then other stuff mixed in which I recognize.  I want to see if I can make this something of a daily routine, at the very least to get my butt out the bed and sit normally.  It felt wonderful; sitting in a normal chair, doing a puzzle, and listening to music made me feel almost human.  I could see myself doing the same in a library or in the park near our home.  A nice subconscious change of setting.

New word: Neutropenic

In my blog posts, I’ve been talking about my white cell count going up.  That’s apparently the easy generic way to describe it.  The nurses and doctors regularly say I’m neutropenic, meaning a specific type of white blood cell, the neutrophil, is low.  This is the count they’re watching.

One interesting part of all of this has to do with what I’m able to eat.  I’m currently on a neutropenic diet, which essentially means I can’t eat anything which might carry any sort of bacteria or exposure to illness.  So no soft cheeses (bye bye feta) and really only packaged cheese—fine by me, since Ireland seems obsessed with cheddar cheese :), no uncooked anything, no salads, no fruit I can’t peel (like grapes), etc etc etc.  I can’t wait—can’t wait—til my diet is back to normal and I can eat some salad.  Lettuce, tomatoes, goat cheese, artichoke hearts, the list could go on for pages.

Stop counting cups

I’ve been set free from having to keep track of exactly what I drink!  I can use the toilet to pee again (instead of their containers to keep track of volume), and I don’t have to write down that I had orange juice with breakfast or exactly how many cups of water I’ve been drinking.  Woo hoo!  Despite how much I seem to enjoy living life by lists, it’s cool to know I’ve got at least one routine further removed from my hospital experience.

Too many commercials

At home, I set up a small PC running MythTV to record TV shows for us, similar to commercial products like the TiVo or the Sky Plus box.  One (very positive) side to using it is that we never watch TV commercials.  Like, never.  We just jump over them.

In the hospital, I don’t have the same luxury.  Actually, I barely watch any TV here anyway—if I do, it’s usually to watch an Irish football (soccer) match (game).  Instead, I usually choose to do other things (read, Sudoku puzzles, listen to the radio, play cards alone or with Elana, write this stuff).

Anyway, the other two patients who are in the same area as my bed watch a lot more than me.  There’s a TV for each bed mounted from the ceiling; sound comes out of each, but it’s possible to use headphones instead.  Neither of those other patients use them, though.

I think I’ve now heard more TV ads in three weeks than I’ve actually watched or heard in more than a year.  Maybe two.  And I’ve still no interest in buying the soup, or watching the TV shows, or traveling to the places they’re selling.  I know—commercials are how television is able to exist.  Same with radio.  But once you’ve had a taste (or lived for years) with little exposure to them, going back to “normal” TV is quite a shift.  The same thing happens when we’re in the US and watch the news—actually, in America there are far more ads in comparison to broadcast television here in Ireland.  And we’re not interested in buying the stuff in the US, either.  I’m so the wrong target market.

Yesterday Elana and I tried doing a video chat with Skype, curious if the hospital’s wireless would work with it.  Bingo!  It was perfect.  I got to see my house for the first time in weeks, and, more importantly, she could bring her laptop upstairs and we got to surprise the boys.  Had a nice sit-down (if brief) chat with Eoin, who explained his work at school was “easy-peasy lemon squeezy”.

Patrick was able to show me both the Lego car he’s building (from a kit sent by our great friends David & Margaret) which I’d not yet seen, but I also got to see (after an initial picture) the great result of a wood-working class: Patrick’s name spelled using carved and varnished (I think) pieces of wood for each letter.  E and I got to talk for a little while, this time with our livingroom as the background.  What a treat!  This also tells us that we’ll be able to use this instead of texting or worrying about consuming our mobile phone minutes, separate from the great time when E’s in visiting.

Headaches

I spent time on the laptop this morning, as well as reading some of my book (cheesy “Nicky Heat” derived from the Castle TV show, but I’m enjoying it) and doing a Sudoku puzzle in our puzzle book.  That strained my eyes a bit, I think, giving me a headache which held on for a little while.  I got a pain killer, but not paracetamol—aka Tylenol—because they want to separate soling the pain from anything related to having a fever.  If I got a fever (fingers crossed it’s been a good week at least since my last one), they wouldn’t know until the paracetamol wore off—thus, the basic pain-killer.

I’m an Innocent Pepper

As advertised in Elana’s picture of me of a couple of days ago , I’m a long-time fan of Dr Pepper, a soda which tastes nothing like Cherry C0ke.  This afternoon I’m enjoying a bottle which Elana got me a few days ago.  The idea of caffeine helping to increase white cell generation is one motivation.  Ironically, either I’ve now been without the soda for a while or they’re messing with the formula.  Boy does it taste different.  Doesn’t mean I’ll ever give it up, just that it may take a while to get the “normal” flavor back.  Regardless, I spend most of the day drinking water.  This is a big treat.

Actually, today I’ve had two—Elana brought in an Innocent smoothie, which was heavenly.  My subconscious is saying it’s interested in alternatives to plain water.  (Shock.)

No Tubes, Baby

I’ve been unhooked all day today.  No fluids, no antibiotics, no platelets (today, anyway), no blood transfusion, nothing.  My blood pressure, oxygen level, pulse, and temperature have all behaved well over a good few days, which is also encouraging.

I was told by the doctor this morning that the urge to get the white cell count to go up so I can get out, even for a bit, is expected.  People not feeling well don’t have the inclination to get away; people feeling well remember there’s a world outside of this hospital ward.

I’m waiting patiently to meet that world again.  It’ll be worth the wait.

I took a shower today, and  you wouldn’t believe the amount of hair that fled for the freedom of the drain.  The hair on my head has thinned out a bit from the pic that E sent, as has the beard.  I wonder how it’ll look in a few days?  I was warned from the outset that hair loss because of chemotherapy is an unavoidable reality, but until it actually starts to happen, you think there’s some sort of an exception to the rule.

It seems to focus more on the head’s hair follicles (and those of facial hair), compared to arms or other parts of the body.  I could be full of it—I’ve not done any research, and am basing this solely on what I’ve seen happen thus far.  The idea of having bare arms is a little weird, but that hair has been a lot less eager to run compared to my head.

Elana and I picked a pattern for a hat for me to wear when I’m able to be out of the hospital. It’s in her queue on Ravelry.  I think the more strange experience is going to be probably not having a beard for the first time since I was 18.  Coupled with my own perpsective will be the reaction of people who know me, since they too have never seen my face without the beard that’s always been part of it.  I know this will all grow back, eventually; it’s still going to introduce some very different experiences in the interim.

Snacks are now mandatory

This morning my weight was measured at 80.1kg (about 177 lbs), which is a bit of a continued drop.  Even though I ate all of my lunch and dinner yesterday.  Go figure.  I’ll try to keep eating my normal meals, and snack where possible.  If I can get myself to do the physio exercises every day (yesterday’s drain from the eye stuff kind of ruled that out), my hope is the muscle development will make up for some of it.  As opposed to just eating lots of food and hoping it just adds to the numbers somehow.

White Cells (with attribution to Grandmaster Mele Mel)

The full complement of my doctor and her team came by this afternoon.  She’s still happy with my general state of good health, and said now it’s all about thinking “white cells.”  The numbers haven’t moved yet.  She wants to see some change over the next couple of days, at least, before they consider taking the Growth Stimulation approach.  She said that’s mainly because the growth approach can just add process compilacions; I could go home earlier (temptation!) but it would complicate other things like my followup bone marrow sampling and other things.

So here’s to the white cell count going up naturally this week.  “It’s only Tuesday,” they said, and want to see what can happen this week.  E and I were talking about figuring out a usable form of yoga which would solicit white cell production.  This is a funny contrast to my asking the doctor about what if anything I could do which would make a difference; she said neither I nor they could kick it into gear yet, and we just need to wait and see for a few more days.

For those of you who have been wondering about B’s haircut….

This morning I had a followup eye exam; instead of being pushed, one of the nurses walked me to the other ward (same floor), which was a nice chance for a little further exercise.  The eye doctor said they’re healing well, and that she definitely sees improvements over last week.  Hours later I still hase massively dialated pupils, reminding us of the Simpsons episode with Mr Burns looking stoned.  I’m tying this with still-blurry vision, but I can see it *just* enough to say most of the words intended.

As a change, this time I wore a face mask over my mouth and nose down to the eye doctor.  (Apparently I really should be wearing these any time I go off the ward for other stuff.)  It wasn’t the most pleasant experience; breathing in got nice clean air, but then exhaling filled the mask with warm air.  Since it took a while to do the examination—after dialation drops, had to wait a full half hour to have them really do their job, apparently—I ended up going for about an hour and a half with the mask.  It made my tummy a little upset; not serious nausea, but enough to make it unpleasant.

Hearing that the eyes are healing was really gratifying, but it didn’t take away from the satisfaction when I was able to go back to my room (this time they had a porter come to offer to walk with me, but I was totally fine being pushed).  As soon as I got back to my bed, off came the mask, and I lay down and rested for a little while, probably doing a bit of a nap: the whole experience took a lot more energy out of me that I’d expected, in contrast to the energy level I’ve felt for the last few days.  Knowing I feel better now, I think my initial experience with wearing a mask, and having it be for so long, really took it out of me.

Warrior Needs Food Badly

Relatively late in the afternoon, I managed to eat my lunch (actually really good, on contrast to most hospital food).  Lots of apple juice helped, too.  That was a bit past 2; ironically, dinner at around 4:30-4:45 means I’m probably not going to be particularly hungry for dinner (“tea”, the “dinner” comes at 12:30pm, Ireland is confusing sometimes, even if you’ve lived here for more than ten years).  I managed to eat my full dinner (tea) too, implying my appetite was still there.  Since this hunger for dinner was a bit of a surprise, I’m noting that I’ve still got two great oranges which E brougcht in from the Punnet in Glasthule.  Even out of season, their fruit & veggies are spectacular.

Numb3rs Still Holding

The white cell count numbers haven’t gone up yet.  It’s no big deal; after another day or two, if they’re not doing it, the doctors will use the growth stimulation (mentioned a few days ago) to encourage while cell development.  They’re confident with either approach; we’re just looking for how the numbers play out tomorrow and probably Wednesday.

On the plus side, my red cell count is staying at a good level.  This means the cells are humming along, and that any small discrepancies are, according to the doctor, being replenished even a little bit.

No more blurry typing. 🙂  The nurses say I still look stoned.

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…)