So I've been sitting in the livingroom since before 6:00, and Hub left for work that early today as he got up at about 4:30 this morning. We are often up out of bed at (what other people consider) ridiculously early hours, although today was a bit more silly than other days. I don't sleep a lot with this chemo gig, sometimes because I'm too hot, sometimes because I'm on steroids, mostly I think it's because I don't do much during the day. Anyway, I've been up for a while here, as it's 9:00a.m. already. I've watched the CBC Morning News (the last couple of days have held some extra-bad news, too) about 50 times I think, and seen the UQAM students do their rendition of the Black Eyed Peas Got a Feeling (or something like that) as many times as the CBC can manage to play it. I've gotten the kids out the door to the bus, and today they declared that even though I'd gotten dressed and put my hair on and everything, and they were very sorry about that, but they'd like to walk themselves to the bus. My children! all growing up and everything. Don't tell them that I was secretly relieved that I wouldn't have to go and stand around and wait for the bus with them, nor that I didn't even watch from the porch to see if the bus picked them up. It's only half a block away.
One consequence of getting up at crazy hours is that breakfast is an ephemeral, fleeting sort of idea. I have something full of carbs for first meal, usually toast or cereal and other things, but now I'm hungry again so in between words here I'm shovelling in tabouleh from a giant bowl of the stuff that I made yesterday. It's quite spectacular, and I can actually taste quite a bit of it although there's something quite bitter in there (garlic?) that was slightly off-putting at first bite, even though I like bitter flavours. The lemon is strong, as is the parsley (maybe the bitter flavour comes from that) and the mint is in there, and the tomatoes. I can taste bitter and sour flavours (luckily I like them, as I said) but sweet and salty? Not so much. Last night while we were gazing at House and having a pot of tea, Hub brought some cookies to the table. I would normally eat the cookies, enjoy the cookies, but not now. Cookies are, sadly, just crunch things that turn to mush and perhaps have extra bits in them like oatmeal ... so it's mush oatmeal, and chocolate chips? slimy wax. Sadly, I didn't think I should eat the cookies, so Hub had to eat them, the poor guy.
Anyway, now I've had first breakfast, second breakfast that many would consider to be lunch but I don't, and it's almost time to try out an errand to the grocery store. I can lean on the cart, it'll be okay, I've done this before. Plus, I've eaten.
Tuesday, September 22, 2009
Monday, September 21, 2009
Random (cancer) Comments
I have been told that I'm handling the chemo well because I eat. Eating is very important to me, even when I can't taste food, my mouth hurts, I'm feeling sick, any combination of the three or all three at once. I figure that if I'm really tired or worn down, it's because I'm hungry, even if I don't know that I'm hungry. I also tend to treat it more like pregnancy nausea, which we generally treat by eating soda crackers, or in my case, vats of cheese twists...which no, okay, I don't eat now because they are bad and I can't taste salt anyway so what's the point? Normally though, I look at the time since I last ate, then I will have a snack or something more substantial if the timing warrants it...or like yesterday, when my stomach actually growled because I was hungry and I ate more food. I do feel nauseous, don't get me wrong, but I don't feel terribly nauseous, and I have lots of pills to control the nausea, and if I were to feel as though it was getting out of control I would phone my friends at the nursing station and ask them to get to the doc to get me a 'script for something else please, very fast. I've had to do that, and felt a little embarrassed about complaining (I hadn't actually even thrown up) but they said no, nip it in the bud, we'll get back to you as soon as we can get the doctor to send a prescription over to your pharmacy. They're good that way. After all, when I first had my chemo interview, the first thing the nurse said to me was, "Vomiting is not acceptable." I can live with that.
***
Everyone who comes to the house (to stay over) has to try on my wig, and I have a gallery going so that we can all laugh about it later. For some people you can hardly tell that there's a wig on them, they've already got reddish hair, it's short, it doesn't make too much difference. On Hub though, it looks like a hair hat, his head is so big the poor little wiggie is totally taken over.
***
I feel guilty because I'm not going to work. Granted I can't go to work, as I would pass out or get sick or who knows what all would happen, but that is immaterial to the fact that I actually feel guilty because I'm parked on the couch writing in a blog rather than pushing back the frontiers of science. I have felt random pangs of guilt over the last couple of months, so this isn't a new thing, and I do try to get to the lab whenever the feeling comes over me that maybe I'm healthy enough to do so. Most of the time, despite not throwing up as in paragraph one above, there's no way I could be out in the public sphere. There is the slight fear of H1N1 of course, and my somewhat compromised immunity, but that's just another excuse for not being around when new things are happening. Maybe I'm not so much feeling guilty as I'm feeling as though the world is continuing on its happy march and I am not participating. Ah, so it's all about me and my need for attention rather than me making any real difference in the scientific world. I should have known.
***
Chemo brain takes on all kinds of manifestations, and for me, I've noticed that one problem I have is finding words when I'm trying to verbally communicate. That's a small thing, because I've always known that my verbal skills are the first to flee when I'm tired or hungry (UH! FOOD! NOW! is a preferred method of communication once the glycemic levels drop). Rather, it's the writing that tends to wander off into directions generally referred to as "crazy". I've noticed a tendency to rant off in an unplanned direction, or even a planned one and then find myself talking/writing about something that has no bearing whatsoever on whatever it was that I was first meaning to say/write. It's all writing, no saying or talking, I should edit that out, but I won't, because that's part of the crazy. Right now I'm being pretty linear, managing to toe the line as it were, but that has not been the case in at least two previous emails today, where I wandered into uncharted territory. The crazy chemo thing starts around day four (today) after treatment, and can last the rest of the time until the next one, and can in fact manifest itself in some crazy behaviour also. Like two weeks ago when I could not sit still, could not remain in the house, felt like my head would explode if I DIDN'T GO AND LOOK AT SOME BOOKS IN A BOOKSTORE. So I went to two bookstores, bought books in the second (used) one, and felt much better. It was a sunny day, which also seems to have a massive impact on how I feel. Today is a rainy day, and I feel like crap and the nausea is actually just brimming below the surface, even though I've eaten and taken my pills and I should really look into those little SeaBands because apparently they work too, but it seems like too much of a folk cure and I'm all about the better living through science. Anyway, yes, rainy day, don't feel so well. Sunny days quite a bit more manic, but also have to be a little further along past the first week after treatment. Who would have known that the weather would have such an impact? I don't think that everything I describe is what most people experience with chemo-brain...many of them lose track of thoughts, or in my Dad's case, temporarily lose the ability to communicate, or worse. Me, I'm complaining about non-linear thought processes. See? Crazy.
***
Everyone who comes to the house (to stay over) has to try on my wig, and I have a gallery going so that we can all laugh about it later. For some people you can hardly tell that there's a wig on them, they've already got reddish hair, it's short, it doesn't make too much difference. On Hub though, it looks like a hair hat, his head is so big the poor little wiggie is totally taken over.
***
I feel guilty because I'm not going to work. Granted I can't go to work, as I would pass out or get sick or who knows what all would happen, but that is immaterial to the fact that I actually feel guilty because I'm parked on the couch writing in a blog rather than pushing back the frontiers of science. I have felt random pangs of guilt over the last couple of months, so this isn't a new thing, and I do try to get to the lab whenever the feeling comes over me that maybe I'm healthy enough to do so. Most of the time, despite not throwing up as in paragraph one above, there's no way I could be out in the public sphere. There is the slight fear of H1N1 of course, and my somewhat compromised immunity, but that's just another excuse for not being around when new things are happening. Maybe I'm not so much feeling guilty as I'm feeling as though the world is continuing on its happy march and I am not participating. Ah, so it's all about me and my need for attention rather than me making any real difference in the scientific world. I should have known.
***
Chemo brain takes on all kinds of manifestations, and for me, I've noticed that one problem I have is finding words when I'm trying to verbally communicate. That's a small thing, because I've always known that my verbal skills are the first to flee when I'm tired or hungry (UH! FOOD! NOW! is a preferred method of communication once the glycemic levels drop). Rather, it's the writing that tends to wander off into directions generally referred to as "crazy". I've noticed a tendency to rant off in an unplanned direction, or even a planned one and then find myself talking/writing about something that has no bearing whatsoever on whatever it was that I was first meaning to say/write. It's all writing, no saying or talking, I should edit that out, but I won't, because that's part of the crazy. Right now I'm being pretty linear, managing to toe the line as it were, but that has not been the case in at least two previous emails today, where I wandered into uncharted territory. The crazy chemo thing starts around day four (today) after treatment, and can last the rest of the time until the next one, and can in fact manifest itself in some crazy behaviour also. Like two weeks ago when I could not sit still, could not remain in the house, felt like my head would explode if I DIDN'T GO AND LOOK AT SOME BOOKS IN A BOOKSTORE. So I went to two bookstores, bought books in the second (used) one, and felt much better. It was a sunny day, which also seems to have a massive impact on how I feel. Today is a rainy day, and I feel like crap and the nausea is actually just brimming below the surface, even though I've eaten and taken my pills and I should really look into those little SeaBands because apparently they work too, but it seems like too much of a folk cure and I'm all about the better living through science. Anyway, yes, rainy day, don't feel so well. Sunny days quite a bit more manic, but also have to be a little further along past the first week after treatment. Who would have known that the weather would have such an impact? I don't think that everything I describe is what most people experience with chemo-brain...many of them lose track of thoughts, or in my Dad's case, temporarily lose the ability to communicate, or worse. Me, I'm complaining about non-linear thought processes. See? Crazy.
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