zen.org Communal Weblog

May 11, 2011

Click, Click, Click Goes the Counter

Filed under: — brendan @ 20:29 GMT

Yesterday, my neutrophils (the ones the doctors care about) were at 0.4; this morning’s blood samples showed them at 0.7. When they reach 1.0 (for two days in a row, I should mention), the growth stimulating hormone shots will stop. In interesting timing, yesterday I did the shot myself for the first time, with the guidance of a nurse. Tonight I applied the second one myself. They sure hurt a lot less when you’re doing it.

In parallel, my white cell count was 0.6 yesterday, and was 1.0 today.

Fingers crossed this team keeps growing.

Dermatology 101

For a long time now I’ve suffered from psoriasis, a skin condition which appears (usually on my scalp) as red patches of skin with what looks like dried skin on it. I use dandruff shampoo which isn’t made for psoriasis in particular, but does a decent enough job most of the time.

A couple of weeks after my first round of chemo, I lost most of the hair on my head. But my scalp was perfectly clear, not a patch of psoriasis to be seen. It turns out one possible side-effect of at least one of the meds used in my chemo treatment has a side-effect of making psoriasis go away, albeit briefly.

Recently we noticed patches were coming back. This could be related to the fact that my white cells were coming back into being. My doctors asked me about my history with psoriasis, and today a dermatology consult (and then she with her boss) came to give me a look-see. I’ve now got prescriptions for a tar-based ointment (for my scalp) and some hydrocortisyl skin ointment (for the few places elsewhere, like under my arms).

Apparently I’m still learning about the ways a chemo treatment can affect your body.

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May 10, 2011

Thou Dost Groweth—A Little

Filed under: — brendan @ 20:05 GMT

On Sunday my neutrophils reached 0.3, and this morning they were at 0.4. Slow, perhaps, but it’s apparently showing something’s happening. These are the specific white cells the doctors are watching most closely. Once they (finally?) go past the 1.0 mark for a couple of days in a row, they will stop the growth stimulating hormone shots.

Separately, one of the haemotology doctors this morning told me they’d gotten the results back from the blood test they sent off around April 28th. They showed I don’t have HLA antibodies combating the platelets. This is good news, in a way. There are apparently other reasons the platelets may not be staying high after I receive some. While there’s a small chance the test results aren’t correct (one of those statistics you just have to accept exists), it also suggests that they may not have to seek platelets specifically matched directly to me. We’ll see how things progress.

Knit This, Baby

I’m reaching the end of the second ball of yarn out of three total for my first-ever knitting project. Elana’s got a picture of how it looks so far, which we’ll try to get online soon.

Wonder what I should knit after the scarf is finished?

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May 9, 2011

Back And Forth

Filed under: — brendan @ 20:44 GMT

Today the patient who’s been directly across from me for a while was finally discharged. Separately, another patient who was diagonal from me, before going into bed 7 or 8, also left today. In an odd form of balance, a patient who’s been diagonally across from me came back after being out for a couple of weeks. Don’t know why he’s returned.

They’re all different people, with different conditions, none of which are my own. But it’s hard to not keep wondering when my own counts and such will make their target. Had a bag of platelets today to give them a boost.

Fingers staying crossed.

Snacky?

On my tray left from my lunch/dinner requests I’ve got a scone (muffin), a 2-pack of cream crackers, a single small square container of Philly cream cheese you’d usually see on an airplane, and an innocent brand pure fruit smoothie.

And I have weight I need to gain.

What an odd coincidence. It’s not pieces of fruit, but it’ll do for cravings, since I finished my dinner/tea at around 5 o’clock.

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May 8, 2011

Guys Talkin’ Sports

Filed under: — brendan @ 21:06 GMT

Today had a really nice treat: Patrick was able to come in for a solo visit, which we’ve not been able to do before. Visiting at my Aunt Mary’s house for a sleep-over last night, he wanted to stay up for the AS Roma v AC Milan football match. The image of him fast asleep on the couch before the match ended is really cute. During his visit here, he enjoyed talking about both the professionals and his own Saturday morning match. Combined with talking about Legos and other things, I got a great bit of time watching the enthusiastic smiles come up on his face.

Separately, Elana and I were able to spend time together talking and enjoying being together. This whole thing about spending time apart is still foreign to us, even having suffered through it for two months. That time makes it difficult to process all the rest of this sometimes.

The help from close friends and family really can make a difference, even in the face of the incredible strain and stress of life.  You know words of thanks aren’t really going to express the gratitude you feel, but you try to say it anyway and hope they hear what you’re trying to say.

Guys talkin’ medicine

Today there were three male nurses and one female nurse working on the ward. Sure defeats any and all stereotypes I had of nurses being mostly done by women. Sure, it’s undoubtedly still a majority, but I also expect a hospital in Dublin, Ireland is an interesting place to look for trends. (Not #nurse trends, you Twitter addicts.)

Guys knittin’ to the spoken word

I think I need to make a lot more progress on my knitting before I try to actually do it while listening to the spoken word. It’s not disruptive—it’s more of a question of where my attention should be. If I’m paying attention to the knitting, I find it really hard to actually process the words I’m listening to with headphones. (This is true for me in general, though—I can’t listen to two people talk at once, either.) Which means when I knit and listen to a football match which is on the TV, I’m not really hearing it.

That is, until the commentators all make an audible increase in adrenaline. I pause my knitting and see what big impressive play is on the screen—which in European football/soccer usually means the play ends up not happening, but it’s always close. The low scores of football matches over here, and those of the professional soccer teams in the US, must drive a large portion of the US audience nuts.

So I’m going to use the book-on-CD of Neal Stephenson’s novel Anathem as a different source of relaxation, and try again later to mix it with knitting. Right now, each pleasure deserves its own time and its own focus.

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May 7, 2011

Zzzzzzzz

Filed under: — brendan @ 21:21 GMT

Today was fairly uneventful: bag of platelets, numbers mostly unchanged, and my arms are happily tired from knitting and reading and hacking on code and using the Net.  Something of a holding-pattern sort of day.  Don’t mind that.

More tomorrow!

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When I Type “Blood”, Do You Faint?

Filed under: — brendan @ 08:01 GMT

The bag hanging above me was about half-way through its drip, drip, drip efforts to complete my second blood transfusion of the day yesterday. My count headed down towards 8.3 or so, prompting a new reload. As I understand it from what the doctors said, my two successive treatments of chemo (with the second being significantly stronger than the first) are what can make things take a bit longer. So we’re still watching and waiting as we head through the weekend and into next week.

Knitting On Another Planet

I’m going to see how far I can get through my second ball of yarn this weekend. Our dear friend Victoria sent me a books-on-CD version of Neal Stephenson’s novel Anathem; this weekend I’m going to see if I can listen to it while knitting at the same time. I know I can do stitches successfully with music, and even with football narration from the TV.  This challenge will be actually paying attention to the words I’m hearing while continuing my Knit-2-Purl-1 pattern. Hell, if Judas Priest didn’t disrupt it, a fun mind-stretch of a story would seem pretty weak in comparison, right? 🙂

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May 5, 2011

Tick, Tock

Filed under: — brendan @ 21:55 GMT

The wait is (still) on, watching the numbers. My platelets, after a bag yesterday, went up from 15 yesterday morning to 20 from this morning’s blood draw. A nurse comes to me anywhere between 5:30-6:15 and uses the central line to take 4 or 5 test tubes’ worth of blood. I wonder what the total liquid volume is of what they’ve taken, considering they’ve been doing it for so long?

White cells moved from 0.1 to 0.2, which I’m not yet interpreting as anything more than recognizing minor shifts can happen. Red blood cells are at 8.7, but they’re comfortable with them and expected we could wait until tomorrow for me to get a transfusion.

Wireless hacking

In case I’ve not complained about it before, the wifi available here on the ward was designed by someone in a bad mood. For reasons no one on the current IT support staff can guess, it’s set up to cut you off after 30 minutes. You’re then forced to put in a username and password again on their web page before you’re back online.

This is particularly rude when you’re in the middle of a Skype call. When asked, the IT folks didn’t seem like they saw any reason to change this behavior. Their suggestion? Reload the login page every 20 minutes. Seriously.

So I think I’ve found my hack to do something quite similar to their crappy reload suggestion, but make my laptop do it automatically for me. In a Skype call this evening, Elana and I had a small hiccup—only for a couple of seconds—but our call didn’t get cut off, like they always have been after about 25-28 minutes.

We reached a new record: a 42-minute call. I think my hack is working! I still think it’s ridiculous to expect people to do such a silly task.

To me, it’s just plain rude. Let’s say you were sitting at a table in the library, reading. Now imagine the librarian ringing a bell, and everyone has to get up, go back to the door into the library, and re-swipe an access card in order to go back in and keep reading. Not only would the librarian feel physically threatened by the animosity surrounding him or her, but the library would soon get shut down as unusable.

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May 4, 2011

This page is left intentionally blank.

Filed under: — brendan @ 21:32 GMT

Not up for a post today, but didn’t want to leave a gap.  No news yet.

Some days it’s easier, others—not so much.  Part of all of this (whatever it is), or so I’ve been led to believe.  Doesn’t simplify it any.

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May 3, 2011

Day 22 and Bloody Knitting

Filed under: — brendan @ 19:38 GMT

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

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

Ker-thunk, down one click

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

Let them eat cake?!

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

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

Knitting milestone achieved

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

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

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

Nevermind.

Forget I even mentioned it.

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May 2, 2011

Happy At 18

Filed under: — brendan @ 21:48 GMT

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

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

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

Stay informed

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

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

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

Knitting milestone

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

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