The Words Flow On

-->Short note about writing and stuff except that now it's turned out to be a long note: I've just finished writing this, and it's pretty long, and I'm pretty tired, and I haven't really read it all back, though I've worked on it how I usually do, writing some, reading back a little, tweaking. I really enjoy doing that, that's why I do it. Not necessarily because I really want to get it perfect, more because well... I just like to do it, I think it's fun. But these have been different to me, of course, with my moods and stuff. They feel less planned (though I never really plan these posts), and even more just whatever comes out. Which I think is really cool, I love free-writing, not thinking about it, that sort of thing. But there are some things in here that I'd like to be coherent, about certain events and progress with healing, and stuff like that. But I'm tired, and I'm having a hard time gauging how coherent it really is. And I really really really have got to go to bed, because I have to get up and go to the hospital in ohhh, just 3 hours and 45 minutes. But also I'm all excited because I just wrote a long post about a lot of stuff that makes me even MORE excited, and I'd like to torture you all with it now, thankyouverymuch! For the precious few of you awake at this wonderful hour. And for those who will or will not (I have no idea how much crazy this is, and how much not crazy, like I said, I just can't tell right now) read it in it's scary lengthiness.
So please don't mind any confusing parts, strangely out of place parts, mis-informed parts (ooh, that one's harder, I'll have to read it over later and make sure it's all true, haha), befuddled parts, or blue zebra parts (oh, did I say " blue zebra?" I don't believe there are any blue zebra parts (besides this one), but maybe, you never know...). And any of those parts may or may not be there! I do not know. I will find out tomorrow. Or, oops, in a few hours. No, I think it'll be more than a few hours before I'm up and reading this thing. Or at least reading this thing. I'll be up, for a little while. Hopefully. Oh dear. I hope everything is ok, with this little sleep. In the hospital, I would get 4 hours or so per night for a handfull of nights, and did absolutely fine. Don't know if this'll be different...
Happy reading! Or not reading! Whichever you choose!
G'night...

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Here I am, third night in a row. Or morning, I should say. No, it's really night.

-->Right now my heart sounds kind of like a foot or something wrapped in cloth, stepping repeatedly on something hollow. It didn't last long, now it's silent again.<--

But the thing is, this time I'm wondering. Because I SHOULD be feeling less energy than usual. Of course, I can't complain about feeling good when I should be feeling not-so-good.

Anyway, tomorrow at 9 AM I'm going to clinic for a blood transfusion (packed red cells). Two units (don't know exactly how much that is, I'll find out later). My hematocrit is 21, they transfuse at 25 and lower (if it's 24-26 though they go based on how the patient is feeling). Just looking it up now, the first thing I found about "normal hematocrit" is something like 36-44 for women.
So yeah... And my neutrophils/ANC/something immune related (sorry I'm being so vague, it was just over the phone, and I'm a bit sleepy right now, and so on) were 400, "severe neutropenia" starts at 500. Yeah! 
And I still feel pretty good. Mostly mentally, I guess. Still interested in things, got stuff to say, even though I have a hard time getting up the stairs...

Stairs. Wonderful stairs. LOVE stairs. The thing about stairs is that they're pretty fun for a lot of different things. Waaaaay back when, when I was around 8 years old, and lived in IL (Champaign-Urbana), and would spend almost every day playing with my next door neighbor, Sadie, after she got home from school, we'd have a blast on the stairs. Sadie had carpeted stairs, and they were REALLY COMPLETELY CARPETED, with the under-carpet foam and everything (I'm assuming). Anyway, we thought it was really fun to slide down the stairs, going down in every way we could come up with. We'd go, of course, just sitting, bumping down each step, still in a sitting position. We'd also slide down on our backs, and fronts, head first, feet first, you name it... Not sure we managed going sideways while rolling... 
We'd get rug burn up the wazoo, but we'd still do it. It was literally hours of amusement.
Up and down, bounding up, sliding down. I don't think we ever even got hurt. Somehow. Besides the rug burns...
Stairs are also great for just sitting on. Different kinds of stairs. Front steps, sitting outside and watching people drive by and walk by. Attic stairs that are REALLY STEEP, and small, and you feel like you're just going to tumble down with every step. Basement steps, wooden and creaky, or concrete and cold. Back steps, sitting where it's less open, seeing the parts of houses that DON'T face the street, their other personality. Fire escape stairs, iron, black, cold, TINY, maybe even just a ladder coming from a second story window. Big, sweeping, marble stairs, in a mansion or something. Hard wood, simple, slightly creaky stairs, in an old-ish house. 
SO MANY KINDS OF STAIRS! I didn't think I'd just list different kinds of stairs, but it was fun.

Anyway, continuing on stairs (sorry!!!! If you really don't want to read about stairs you can skip over that part. Oh. Haha I guess it's too late for that, if you've been reading straight through. But at least you can stop now and go on to the next thing (or just stop altogether if you want!).... I brought the subject of stairs up because now that I have things like low hematocrits and such, I really appreciate what stairs are used for. Getting from one floor to another, or even just up the front steps and into the house. And of course, in a two-story house, my bedroom is up a decent sized flight of them (not in all two-story houses, but most, and this one). It's not really a big problem, or at least it hasn't been so far. I can usually get up them just fine, if a bit slower than I used to be. And it was only really the last few days recently that they've been noticeably worse.
It's only that as I go up them (and recently it's been quite slow, three or four steps at a time at best) I get out of breath (pretty fast!) and my heart rate goes up a lot. 
So tonight I stopped halfway up, just for a breather, and then continued up. Another time tonight, I sat at the top after making it up, and looked down the steps, and thought about stairs (heheh I keep switching around, using steps and stairs. I'm not really thinking of them differently, just randomly deciding to use one word or the other). So that's kind of where all of this stair-talk came from. =P

Wow, I just wrote a lot about stairs. Ok, glad to get that out, then!

Today.
Actually, wait. First, last night. I decided to take a bath, because they're nice, also because I needed one, and because I thought it would help me maybe get to sleep sooner, and easier. Well, first I had to decide where to take it. This house we're staying at (sorry, haven't talked about it much, we're staying with some friends, the Thurstons (really cool, nice, awesome people!) just until we move into our place, wherever that is (close, but haven't quite picked yet/gotten it to work)) has two bathtubs, one down in the basement, and one upstairs just across the hall. The basement one seems pretty nice, it's a finished basement. And I was thinking that it would be good to use that one, so I didn't hold up the one where people brush their teeth and use the loo. 
But after talking to Sally (the mother of the kids), I found out that it really wouldn't be a problem to use the upstairs one, there was yet another bathroom that they could use. And we thought it would be a LOT better for me to be upstairs where everyone else was, in case I needed anything. And I even thought, after taking a bath I tend to feel both super-relaxed and also pretty weak because of the hot water soak, and TWO flights of stairs would probably be a bad idea.
And oohhhhmygoodness was I right. I really like a good hot bath, and had had kind of luke warm ones in the past that were pretty disappointing, so I poured it hot. Way too hot, actually, at first. I put some cold water in, since I did want to get to sleep soonish, and it would have taken forever for me to get in all the way (and it probably was better off being more bearable anyway =P ).
So it was really nice for a bit. And I like lavender a lot, and I have this lavender soap/"foam bath" that's in liquid form. I forgot to put it in before I started pouring the bath, so there weren't any bubbles (I didn't put it in at all), but it was a good smelling soap. =D
Anyway, I started getting that feeling where you've been in the bath too long, or a hot tub, or hot spring, and you start feeling a bit fainter than usual, and super-weak, and just SO warm (or at least I get that feeling...). And I just had to get out. Which of course was pretty hard, because of the combined effect of my low counts (which I didn't know about at the time) and the really hot water.
But I managed to be sitting on the edge of the tub with my feet still in the water. Sat there for a while. Well, I don't know how long it was, maybe 5 or 10 minutes. A bit harder to breathe, because of all the steam in there, and my tiredness. But I didn't feel like getting up to open the door a crack. I really wanted cold air though. But I made do with cold water, splashing it around a bit. And sitting there, I was SO HAPPY that I was upstairs. I don't know if I would have made it up two steps, let alone two flights. I seriously think I might have passed out. 
I was still covered in soap, so I knew I'd have to get back in and finish. But I waited until I felt better, at least enough to be back in the water (which I cooled down some quickly with cold water). Got out as soon as I could, dried off, and AHHHHHHH FRESH AIR COLD AIR BREATHE.
Kind of lurched into our room and onto my bed. Lay there for a good ten minutes, letting my heart get back to normal. And then it was normal, and I got ready for bed, couldn't sleep (yes, I tried. And I was thinking so much, and hated the idea of forgetting the ideas I was getting), and started typing.

This morning I got up around 10:00, maybe 10:30. Got downstairs and felt pretty weak. Margaret (the girl here) was there, looking like she'd woken up recently. I felt something was off, couldn't really tell what, and it was just a vague feeling. Then it was explained that Margaret wasn't at school because she had fainted this morning. I knew she had been up late last night with homework, and had finally put it away to do in the morning. But anyway, I don't know exactly how it was, but something like she got really dizzy, after someone had said something about fainting. Kind of like the power of suggestion. Anyway, then a bit later she had just fainted. And it was a bit uncanny, because even though I was feeling weak, and a bit off as well, the feeling was not that strong. But then a little later I started feeling a bit more dizzy, and a lotmore faint, and weak, and shaky, and I went straight to lay down on the couch. Where Margaret had been laying earlier. With basically the same problem. Welllll, apparently fainting/feeling faint is contagious, then! =P
Anyway, she was appearing to be feeling better, and she said she had gotten some more sleep afterwards. 

I remembered that Jessie, the visiting nurse, was going to be coming at 11:45 for a blood draw/check up. When she got there I was still eating oatmeal with brown sugar (lots of brown sugar, yum) while sitting on the couch. I told her about my ridiculous time talking a lot and stuff, and how great I've been feeling. We got a kick out of a bunch of different things. I really like her a lot.
My blood pressure was something like 88 over 45. Low, for me. So yeah, I hadn't really thought about what it might be, except maybe a bit about during my bath last night.
She accessed my port, drew blood, and checked my wound from the port-removal site on the other side. It was looking a lot better than the last few times we've seen it (it was awful a few weeks ago, and hurt like never before last time we changed the dressing). A LOT better. And when she cleaned it, it hardly hurt AT ALL. I was really surprised. 

Last time we looked at it, it was with the wound care people and I was in clinic. 
The wound care people.
Oh my goodness. Or even better, by the drawstrings of my wonderful pineapple pajamas, the wound care people were a HOOT.
Here's what happened. 
On Friday, I had to go in to clinic (usually my clinic day is Wednesday) to see the "wound care lady" (Beth). But then I was feeling pretty off, it was the day before I got the hyper mood, and we decided to get my blood drawn to see if I needed a transfusion (ohh, I had forgotten about all of this amidst my happiness...). And we were really close to being late, so mom dropped me off at the door and continued on to find a spot in the parking garage (oh the lovely parking garage). And I was feeling a bit off, as I said, so I kind of ambled up to clinic, after stopping at the hand sanitizer/mask/glove/cleanliness station to grab a mask and some sanitary goop. Continued to amble over after getting off the elevator at the 6th floor. I was about to sit down on one of the benches lining the wall, to rest and maybe just wait for mom, because they probably wouldn't let me really go in without her because I'm not 18 yet (I don't know, I haven't tried, but we did try once to leave me there once I was in, when mom had to get to something. She had to figure something else out though, because they couldn't let her leave.) But then I saw up ahead that Beth was there, so I kept going. She was in the waiting area, and I was right on time. But we decided to wait for mom, so we sat in some chairs (of which waiting areas have PLENTY, of course). With her was a shortish woman with kind of poofy black hair and possibly glasses (I kind of picture her with glasses, but I don't remember if she actually had them or not). She was introduced, either by her or Beth, as Beth's boss/head of department. And ohhhh, I can NOT remember her name. *Sigh* I've noticed that I've been a bit worse with names than usual... Oh well.
Anyway, we talked for a bit, about stuff, can't remember what, and then she said something like, "I bet you're wondering why I'm here." Or, "I bet you don't know why I'm here." Anyway, it actually hadn't occured to me to wonder at all, which seems a little odd now, but oh well.
She said she was there because she'd heard from Beth how nice we were, and wanted to come meet some nice people. Awwwwwww, that was sweet of her!
Just then mom showed up, and we all went in. 
The wound care people don't usually come to clinic, though it was the second time for Beth, because she'd come to check mine a while back. We were just going to use a room, Beth had asked if she could get one real quick, just for checking my wound. There were a few open, though, and it didn't seem too busy.
Went straight back, into one of the semi-central ones (a few doors off from being in front of the nurses station). One that just had a curtain, no sliding glass door (there are a few with doors, they're nicer since the doors block a good amount of the sound). 
Anyway. Beth's boss was really lively, quite funny, and a bit strange. In a good kind of way.
We took the dressing off of my wound. I'm repeating their descriptions, mostly, since it's an awkward angle for me. I can just barely see it. It's on the right side of my chest, about an inch below my collar bone. Anyway, it looked pretty shiny, wet, and a normal color of reddish, with a bit of blood. The blood isn't necessarily bad, but it's not always there, and it's not great either, or so it seems. So the black-haired woman got a syringe of saline and some gauze, and got the gauze wet with it, and held it for Beth as Beth did her thing. "Her thing" being looking at it, and talking, and pointing at parts, and sometimes measuring it, and prodding it, and answering our questions, and hearing about how it has been doing (she doesn't see it that often). She took the wet gauze and cleaned the wound. Usually that hurts a bit, stings some, but it has never been truly painful. Until then. And ohhhh wow it was SO painful. Like I said, it's never been like that. I think that may have been the most painful thing that's happened to me so far. But at least it was short, only a few swabs. And it's just the swabbing that hurt that much. The rest of the time it was just definitely there but not too bad.
And I was SO THANKFUL that we don't have to stuff it with that "Aquacell Ag" stuff anymore (I think I wrote about it a while back, it was this silver impregnated felt-like stuff that had to go inside the wound when the wound was still a hole). I don't know if I could have taken that, if it hurt so bad just to clean it (I think she was swabbing it pretty gently, though I couldn't tell how much pressure there was through how it felt).
It's not a hole anymore! It filled in from the bottom up (it even had an overhang, which is gone now), exactly how it should have, and now it's just a big indent that's not quite healed.
Really not healed, at that point.
She put something new on it for a dressing. We'd been using this stuff called Allevyn, which is an adhesive bandage thing with a special absorbent pad to soak up any moisture, and it's got special "breathing" capabilities, and is pretty nice (about $4 per bandage, or so Jessie says, but it's taken care of by them). More recently we've been cutting them though, because the ones we got were pretty big. 5 inches across, square shaped. A while ago I needed them that big because I had two holes to cover. But the other hole, the much smaller one, has been completely healed for a while now. But we still have more 5 inch ones.
Anyway, we cut them into pieces that fit just over the wound and a bit around (usually about 2 inches by 1 inch) and then use "Hypafix" tape to tape the piece down, since we cut off the sticky on the Allevyn. It's a set-up that's worked for a few weeks now. And what goes under the Allevyn used to be Aquacell Ag, but a few weeks before this episode that I'm writing about Beth had given us a little tube of gel with silver in it, that's supposed to be good for stuff like this. That was when it looked really really good, and even had a bit of skin-like stuff over it, and we didn't need to use the Aquacell. She rolled it on, and then put the Allevyn over it. And ohhh wow, the next time we saw the wound, about a week later, it looked a lot worse. It was at home, mom was doing the weekly dressing change (it had gotten to weekly, at the very beginning it was every few days). I think it was actually a bit more than a week, I don't remember why that was. Anyway, we weren't too worried, especially since it had looked so good the last time. But after we looked at it, it was just yuck. It was really goopy (maybe the gel, but for some reason not-right looking), and weird, and painful, and we called someone to ask about it, I guess.... It wasn't the first time mom's done the change, she does it sometimes when that's the easiest thing to do, and had when it needed a lot more maintenance.
Anyway, it really looked like the silver gel had messed it up. I don't know if that was it at all, maybe it was my counts, or something else. But we sure weren't going to put that stuff on again.
We cut a little piece of Aquacell and lay it on top of the wound, and put Allevyn over that, I think after calling Jessie, who's seen it a lot more often than Beth has.

ANYWAY, I was going to write about the black-haired woman, just because she gave me such a good laugh after we'd gotten the wound all covered with this fancy new Allevyn with silver in the Allevyn itself. 
She had picked up the half-used syringe of saline again, and was pointing it at things like she was going to squirt it at something. Or someone. She started peeking out the curtain, and then brought it back over to the sink that was in the room. Pointed it at the sink from about two feet away and squirted it in. But it kind of missed, and got all over the counter too. She said kind of quietly, but amusedly, and in this strangely funny voice (can't quite pinpoint the tone she used, why it was so ridiculously funny), "I was going to squirt it at the first person who walked by." Oh, actually, I think it was right before she squirted it at the sink/counter. Anyway. I was laughing so hard, so so hard, it just made my day. Which really needed making, at that point.

It occurs to me that these posts have been really long, and maybe kind of daunting in their longness, and then there's been me talking about the flow of words, which might make it even more daunting. I don't know, obviously for me it's not that daunting, right now at least, but maybe I should try breaking them up into several posts, so no one has to feel like there's this incredibly long post from Nadine that might have a smidgen of interest in it but it's lost among all of the stuff. And I could also try maybe for shorter sentences sometimes. ;P
Opinions? Will I get any, if they keep up being this long, because no one has time to make it all the way to the bottom, where I'm talking about longness and asking for opinions?
Maybe I'm just being silly! Like THAT never happens. Heheh, these last few days have been a whole huge silly-fest.
But really, I'd love to hear opinions about length and breaking it up and stuff like that.
You all always seem to have wonderful stuff to say, whether it's cheering me on or joking about fish in IV bags or reminiscing about cucumbers and salad and henna and yeah... I don't know if I've really said much about that. Thank you! 

Thank you so so so much, it means the WORLD to me. And a lot of the time that is what's pulling me through.