It was a bit of a bittersweet visit with my doctor today, as I found out I might need more rounds of chemo than I previously thought. Which means this may be a MUCH tougher summer than I thought it would be, as it'll mean that I'll be constantly in and out of the hospital. Siiiiigh. :/
"You have a very aggressive type of cancer," they reminded me. "If you don't keep having consolidation treatments, you'll relapse."
I know that but I don't like hearing it. Blaaaah.
One of the many things dealing with this fucking cancer has taught me is seriously, TRULY living in the moment. I know we're all told to do that, we're all supposed to do that, but it's so hard to do! But when I get my tiny little bits of "vacation time" because I spend the rest of time either neutropenic and/or in the hospital, and when I have no idea when I'll get a transplant and no clue which direction my health will take, I have no choice but to do exactly that. When you're forced to do something, I guess that's the best way to learn how to do it.
Heh, I'm living the theme/motto of one of my favourite musicals of all time, Rent. "No day but today."
On the plus side, I'm no longer neutropenic. I've got a good two weeks until I'm being readmitted for chemo round #3 (or as I call it, HELL), so I've got a LOT of activities to pack into the next fourteen days or so---while trying to not go TOO crazy so as not to make myself sick either. :P
Monday 13 May 2013
Thursday 9 May 2013
I'm scared of mashed potatoes.
I'm aware of how hilarious the name of this entry sounds, and I know phobias by definition are irrational, but being scared of food takes the cake, doesn't it? (No pun intended, yuck.) Well, here's some context.
I hate hospital food. Well, so does everyone. But I hate it to the point that I refuse to eat it. During my first stay, which was five weeks, I could not go five weeks without eating, and I could not eat outside food during that time as I was severely neutropenic (moreso than I am now), so the only thing they could do was feed me by IV, which I GLADLY took over the hospital food. I had been eating it, or trying to, for a few days, but the pain I felt trying to eat the food with all the sores in my mouth from leukemia made it almost impossible, so I started getting a lot of mashed or pureed food instead. But once the nausea from the chemo kicked in, I had to stop. And then I guess in my mind, I couldn't separate the hospital food from the feeling sick from chemotherapy. So the more time that passed, the more I associated the food with being diagnosed with leukemia, since not only was that around the time I was eating the hospital food still, but the doctors came into my room and told me I had leukemia while I was eating.
So as you can see, to say I have a bad association with the hospital food is a bit of an understatement. Also, this was when my sense of smell was still ultra crazy super-scarily sensitive, so the smell of the food (which I could smell from down the hall) really REALLY got to me. It got so bad that I couldn't leave my room during breakfast, lunch, or dinner hours because I didn't want to be hit with the smells of patients' meals, nor did I want to accidentally see any of it. They comes delivered in these dark blue plastic containers that freak me out so badly when I see them I have to turn around and drag my IV away from them as fast as I can. If an unknowing orderly brings one to my room by mistake, I freak out. I know it's bad, but I can't help it. Just seeing those things makes me so sick. They upset me so much that I can't even feel embarrassed by little freak-outs. I just need those little blue containers of doom away from me, no matter what the cost. Just seeing them can sometimes cause me to break out into sweat and get queasy. It's ridiculous.
Today I was watching Family Guy--yes, a cartoon--and it was supposed to be Thanksgiving and so the characters were eating mashed potatoes. At one point they put a HUGE serving onto another character's plate and I started to feel a little queasy and had to look away. I felt a little off for the rest of the evening. Then at night, Mike (my husband) and I decided to watch Dexter. Guess what, a Thanksgiving episode! And that's all it took. All of the sudden, I couldn't get the most super vivid, vivid, VIVID thoughts of hospital food out of my head. Not just images--but the taste, the texture, the way it made me feel, so sick, so nausous, the pain in my mouth, the spooky "aura" of having just been diagnosed with cancer..and I just couldn't shake it. It was making me feel ill, but it wasn't physically making my stomach hurt either. I didn't feel like getting up and popping a gravol, but boy did I feel awful. And the sensation of food burning the ulcers in my mouth, the creepy aura of the hospital...I just couldn't shake it, and didn't know how to get rid of that feeling. It was just so vivid, so intense.
Finally, I ate a yummy corn muffin that Mike had made and covered with margarine and jam. It didn't feel like, taste like, or smell like mashed potatoes. It didn't burn my mouth. It was OK. It worked for awhile, at least.
Now I'm writing this and...I dunno. I feel OK. I can't avoid mashed potatos (and similar dishes) for the rest of my life. I'm gonna have to get used to them somehow. Exposure, I'm guessing. But omg, what a strange evening, and not in a good way.
Doesn't the body work in strange and absolutely seemingly-unproductive useless ways sometimes?!
Btw, I wrote all this under the influence of zopiclone, so I hope it makes sense. My apologies for any spelling/grammar/logic disasters here within. ;)
I hate hospital food. Well, so does everyone. But I hate it to the point that I refuse to eat it. During my first stay, which was five weeks, I could not go five weeks without eating, and I could not eat outside food during that time as I was severely neutropenic (moreso than I am now), so the only thing they could do was feed me by IV, which I GLADLY took over the hospital food. I had been eating it, or trying to, for a few days, but the pain I felt trying to eat the food with all the sores in my mouth from leukemia made it almost impossible, so I started getting a lot of mashed or pureed food instead. But once the nausea from the chemo kicked in, I had to stop. And then I guess in my mind, I couldn't separate the hospital food from the feeling sick from chemotherapy. So the more time that passed, the more I associated the food with being diagnosed with leukemia, since not only was that around the time I was eating the hospital food still, but the doctors came into my room and told me I had leukemia while I was eating.
So as you can see, to say I have a bad association with the hospital food is a bit of an understatement. Also, this was when my sense of smell was still ultra crazy super-scarily sensitive, so the smell of the food (which I could smell from down the hall) really REALLY got to me. It got so bad that I couldn't leave my room during breakfast, lunch, or dinner hours because I didn't want to be hit with the smells of patients' meals, nor did I want to accidentally see any of it. They comes delivered in these dark blue plastic containers that freak me out so badly when I see them I have to turn around and drag my IV away from them as fast as I can. If an unknowing orderly brings one to my room by mistake, I freak out. I know it's bad, but I can't help it. Just seeing those things makes me so sick. They upset me so much that I can't even feel embarrassed by little freak-outs. I just need those little blue containers of doom away from me, no matter what the cost. Just seeing them can sometimes cause me to break out into sweat and get queasy. It's ridiculous.
Today I was watching Family Guy--yes, a cartoon--and it was supposed to be Thanksgiving and so the characters were eating mashed potatoes. At one point they put a HUGE serving onto another character's plate and I started to feel a little queasy and had to look away. I felt a little off for the rest of the evening. Then at night, Mike (my husband) and I decided to watch Dexter. Guess what, a Thanksgiving episode! And that's all it took. All of the sudden, I couldn't get the most super vivid, vivid, VIVID thoughts of hospital food out of my head. Not just images--but the taste, the texture, the way it made me feel, so sick, so nausous, the pain in my mouth, the spooky "aura" of having just been diagnosed with cancer..and I just couldn't shake it. It was making me feel ill, but it wasn't physically making my stomach hurt either. I didn't feel like getting up and popping a gravol, but boy did I feel awful. And the sensation of food burning the ulcers in my mouth, the creepy aura of the hospital...I just couldn't shake it, and didn't know how to get rid of that feeling. It was just so vivid, so intense.
Finally, I ate a yummy corn muffin that Mike had made and covered with margarine and jam. It didn't feel like, taste like, or smell like mashed potatoes. It didn't burn my mouth. It was OK. It worked for awhile, at least.
Now I'm writing this and...I dunno. I feel OK. I can't avoid mashed potatos (and similar dishes) for the rest of my life. I'm gonna have to get used to them somehow. Exposure, I'm guessing. But omg, what a strange evening, and not in a good way.
Doesn't the body work in strange and absolutely seemingly-unproductive useless ways sometimes?!
Btw, I wrote all this under the influence of zopiclone, so I hope it makes sense. My apologies for any spelling/grammar/logic disasters here within. ;)
Wednesday 8 May 2013
It's the little things
Like looking up things online, looking at stuff I'd like to buy for my students when I eventually get my own classroom...wait, my own classroom? What if I never make it that far?
Or hearing about movies that are in the works now, to be released in the summer of 2014 or even 2015. Will I still be around? Will I get to see it?
It's a rather shitty feeling, to put it pretty fucking mildly.
Or hearing about movies that are in the works now, to be released in the summer of 2014 or even 2015. Will I still be around? Will I get to see it?
It's a rather shitty feeling, to put it pretty fucking mildly.
Friday 3 May 2013
I HOPE IT RAINS ON ALL OF YOU.
I WISH EVERYONE ON FACEBOOK WOULD SHUT THE FUCK UP ABOUT DRINKING
ALCOHOL IN THE SUN FOR ONE SECOND. JUST FOR ONE GODSDAMN SECOND.
WHY YES, I AM BITTER. WOULDN'T YOU BE?! >:/
WHY YES, I AM BITTER. WOULDN'T YOU BE?! >:/
Don't faint, bitch!
Well, I guess my red blood cells are starting to disappear, considering I just became totally out of breath from washing the dishes. Seriously, I feel like I'm about to black out. Fun stuff! They can't be THAT low considering I had a blood test yesterday and I didn't need a transfusion, but they're obviously dropping if I'm this short of breath from doing such a mundane activity. Of course, that could also be due to (or in combination from) being so weak from the chemo. Either way, my red blood cells are going to drop considerably sooner or later. I wonder when my next (and last!) consolidaton chemo is. It'll be my last go of consolidation chemo, but not my last dose of chemo all together: whenever I get my transplant, I'll need chemo again. Fuck I hate chemo! Though I guess that's a useless thing to say. Is there anyone in this world who ENJOYS chemo? lol. I mean, we all love that it destroys cancer and can save our lives, but omg does it ever kick your ass at the same time.
All right. It's 2 in the afternoon. I woke up at 11 AM and I have yet to eat anything. The trick now is to make myself something to eat without fainting. I accept this challenge! o__O
All right. It's 2 in the afternoon. I woke up at 11 AM and I have yet to eat anything. The trick now is to make myself something to eat without fainting. I accept this challenge! o__O
Thursday 2 May 2013
Vinegar Days
My title may sound like the title of a Japanese pop song, but it accurately describes how bitter I've been. Today the weather has been absolutely beautiful where I live (Montreal, Canada)--just full on summer weather. Everyone's out and about and having a good time and I can't join them. I went out onto my balcony to get some fresh air and that made things worse, as I live on busy street so I all I saw were large groups of people giggling and smiling and having a grand old time in the sun, some of them carrying cases of beer, and tons of cyclists were out, too. Whole groups of them. I just sat on my balcony and sulked. What could I do. I'm neutropenic, so I can't be around crowds. It's going to be a long, restless, boring month.
BUT.
I am grateful I get to spend it at home rather than in the hospital, and that is an understatement.
Speaking of the hospital, I gotta be there at 7:45 tomorrow morning for a blood test (and perhaps a transfusion later in the day), and it's 1:39 AM right now. I should probably be getting to bed soon. I took a zopiclone about twenty minutes ago and I already feel it kicking in, so hopefully falling alseep quickly will be the usual sudden smack into darkness it usually is. The danger is sleeping through the alarm, lol. I'm sooo NOT one of those people who sleeps through alarams--EVER--but once zopiclone is invovled? Holy shit. That crap knocks me out goooood. Although once in awhile I'll wake up from it, finding myself talking or ranting in gibberish. That part is kind of scary. Thankfully I stay in my bed and don't sleepwalk or anything. So far. :P
Well, my eyelids are already starting to close, so I guess I should be getting some sleep before waking up super early to get blood removed and then possibly transfused right back in. Oh, and to be interviewed by my psychiatrist's student for his final exam. My psych said I would be the perfect candidate for him to interview, as I've got "both problems" going on. When I asked what he meant by that, he pointed out that I'm both physically AND mentally ill. So yay, I'm a great specimen for someone's final exam. Because feeling like a living test subject is *sooo* much fun!
BUT.
I am grateful I get to spend it at home rather than in the hospital, and that is an understatement.
Speaking of the hospital, I gotta be there at 7:45 tomorrow morning for a blood test (and perhaps a transfusion later in the day), and it's 1:39 AM right now. I should probably be getting to bed soon. I took a zopiclone about twenty minutes ago and I already feel it kicking in, so hopefully falling alseep quickly will be the usual sudden smack into darkness it usually is. The danger is sleeping through the alarm, lol. I'm sooo NOT one of those people who sleeps through alarams--EVER--but once zopiclone is invovled? Holy shit. That crap knocks me out goooood. Although once in awhile I'll wake up from it, finding myself talking or ranting in gibberish. That part is kind of scary. Thankfully I stay in my bed and don't sleepwalk or anything. So far. :P
Well, my eyelids are already starting to close, so I guess I should be getting some sleep before waking up super early to get blood removed and then possibly transfused right back in. Oh, and to be interviewed by my psychiatrist's student for his final exam. My psych said I would be the perfect candidate for him to interview, as I've got "both problems" going on. When I asked what he meant by that, he pointed out that I'm both physically AND mentally ill. So yay, I'm a great specimen for someone's final exam. Because feeling like a living test subject is *sooo* much fun!
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