zen.org Communal Weblog

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

Numb3rs up

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

Going all dairy-like

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

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

Cross-matching with blood donors

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

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

Guys can knit, I’ve got proof

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

Not to say I won’t try, someday.

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

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

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

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

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

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

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

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

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

Skype just plain rocks v2

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

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

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

Apple could have an untouched market

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

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

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

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.