I've been taken off my IV machine. I can't explain what it feels like after being tethered to it for an entire month. It's going to take a long time to get used to. But omg I feel so freeeee! I keep trying to adjust/move around wires every time I get up and then I'm so pleasantly surprised when I realize I don't have to. It feels great. It feels AMAZING. I can't find the words to describe it.
Earlier this afternoon Alex was here (before they took me off the IV machine) and he took this picture of me pretending to kick it. What perfect timing that turned out to be, since I can now use this as a celebratory picture! :P
The bathroom feels SO much bigger without this stupid machine taking up
most of the space. Just the act of going to the bathroom is sooooo much
easier without having to drag a stupid machine with me each time.
Moving around my room is a DREAM.
Speaking of dreams, sleeping tonight should be interesting without that damn machine. Ah, dreams. That's an entry for another time. That'd be a long entry to write. The crazy-ass dreams I've had since I've been in here....wow! Although I haven't had any since the doctor switched my sleeping pills, and this makes me sad.
Saturday 30 March 2013
Friday 29 March 2013
Biopsy time!
I'm finally feeling a LOT better physically. The fevers, the mouth sores, the dizzyness, the zoning out...they're all gone. I feel way better today. Except for the headaches and the pain in my back from the bone marrow extraction yesterday morning, though dilaudid helps take care of that.
Right, the bone marrow extraction. So that was done yesterday morning and they gave me ambien, which they told me to put under my tongue so that it would dissolve instantly. It did, which was really weird and tasted awful. They then gave me a shot of morphine, so I've now had all three opiates that I'm offered here as an AML patient in this hospital (codeine, dilaudid, and morphine). The extraction was done differently than last time, administered by different doctors who gave me different drugs. What pissed me off a lot was that I lay super, SUPER still, but every once in awhile, the doc would hit a part of bone that would make my body jerk forward--not because I wanted it to, but as a total reflex. And he kept reminded me not to move, to which I kept replying I couldn't help it, it was a reflex. Like a hammer hitting a knee. At one point he finally said, "Maybe we should just give you another shot of morph--" "YES!" I didn't give him a chance to finish his sentence and everyone in the room laughed. I got my second shot of morphine not even 2 minutes later and damn it felt good once it kicked it. But getting that shit injected into you? HOLY HELL. When the nurse was injecting it, she said, "it's going to burn, OK?" and I kind of scoffed, I was like, "Oh, this is nothing," to which she replied, "...it's not finished yet." She took the needle out and I was like, "Oh, that wasn't so ba--aahhhHHHH OOOOOMG!", it felt like little sunburns in my veins! But I was laughing too, from being so cocky.
Anyway, the bone marrow extraction sucked (HAHA, pun not intended), actually I asked to see what my bone marrow looked like as Mike was here for the first one and he said it looked like mangled noodles, but I couldn't see as I was face down on the bed for that one. So they showed it to me and you know what it looked like? A little line. A straight little line. So boring! Oh well.
Anyway, they're gonna biopsy the shit outta that thing and give me the results on Tuesday. And so far ALL the doctors seem SUPER positive about it. They all come to see me all excited, saying, "Your white blood cells, they're back! You're doing good, you're looking good, eh? We wanna send you home next week!" And I'm just like "....well, assuming the results of the biopsy are good, right?" To which they always just say, "hmm, yeah!"
Do they know something I don't know? Why are they so super optimistic? They must have a reason to be; they've been doing this for awhile, they know what they're doing. Ahhh, I don't want them to get my hopes up for nothing! What do they know? In the words of the glorious Elaine Benes from Seinfeld, tell me! Telllll meeeeeee!!!!
Right, the bone marrow extraction. So that was done yesterday morning and they gave me ambien, which they told me to put under my tongue so that it would dissolve instantly. It did, which was really weird and tasted awful. They then gave me a shot of morphine, so I've now had all three opiates that I'm offered here as an AML patient in this hospital (codeine, dilaudid, and morphine). The extraction was done differently than last time, administered by different doctors who gave me different drugs. What pissed me off a lot was that I lay super, SUPER still, but every once in awhile, the doc would hit a part of bone that would make my body jerk forward--not because I wanted it to, but as a total reflex. And he kept reminded me not to move, to which I kept replying I couldn't help it, it was a reflex. Like a hammer hitting a knee. At one point he finally said, "Maybe we should just give you another shot of morph--" "YES!" I didn't give him a chance to finish his sentence and everyone in the room laughed. I got my second shot of morphine not even 2 minutes later and damn it felt good once it kicked it. But getting that shit injected into you? HOLY HELL. When the nurse was injecting it, she said, "it's going to burn, OK?" and I kind of scoffed, I was like, "Oh, this is nothing," to which she replied, "...it's not finished yet." She took the needle out and I was like, "Oh, that wasn't so ba--aahhhHHHH OOOOOMG!", it felt like little sunburns in my veins! But I was laughing too, from being so cocky.
Anyway, the bone marrow extraction sucked (HAHA, pun not intended), actually I asked to see what my bone marrow looked like as Mike was here for the first one and he said it looked like mangled noodles, but I couldn't see as I was face down on the bed for that one. So they showed it to me and you know what it looked like? A little line. A straight little line. So boring! Oh well.
Anyway, they're gonna biopsy the shit outta that thing and give me the results on Tuesday. And so far ALL the doctors seem SUPER positive about it. They all come to see me all excited, saying, "Your white blood cells, they're back! You're doing good, you're looking good, eh? We wanna send you home next week!" And I'm just like "....well, assuming the results of the biopsy are good, right?" To which they always just say, "hmm, yeah!"
Do they know something I don't know? Why are they so super optimistic? They must have a reason to be; they've been doing this for awhile, they know what they're doing. Ahhh, I don't want them to get my hopes up for nothing! What do they know? In the words of the glorious Elaine Benes from Seinfeld, tell me! Telllll meeeeeee!!!!
Wednesday 27 March 2013
This is what they call a catch-22, right?
Oh FFS, my doctor just spent 30 minutes listing all the horrible, horrible ways a transplant can kill me and how the first year post-transplant has a mortality rate of 25%. And, during that time the leukemia has a 20% chance of returning. And, I found out my sister's NOT a match. And, if I don't get the transplant, I'm very likely to die within the next year or two. And, lots of other fun info. Upon my learning this, a perky woman came into my room asking if she could perform reiki on me and it took ALL I HAD to not tell her to FUCK RIGHT OFF. REIKI. ARE YOU FUCKING KIDDING ME. Where's the apothecary in this damn place?!
Saturday 23 March 2013
Mortality
ARGHHHHH FML. I've learned it's not the best idea to read about other people's leukemia battles, but sometimes they're shoved in my face without my asking (like on TV, etc) and the results are often the same: people MY AGE (or younger) who all die within a year or 2. FUCK THAT. Fuuuuck that shit. I'm not posting this for sympathetic comments or false hope, I just had to get this off my chest as if I don't cool down soon I'm going to lose my fucking temper and trash this room. I am so angry, so upset and angry I can't quite find the words to express it. I know some people survive, but I've read about WAY more lost battles than success stories, and it fucking sucks. I've read so many other people's blogs and Facebook pages where their friends are all like, "yeaaah you can do this!" and they're like "Fuck yes I can!" and then they even get better...only to have a relapse and die a year later.
I don't like these odds. Some days I feel more positive than others but something I saw mentioned on TV tonight during a hockey game about a 29-year-old who lost her battle with leukemia...I don't know, it was kind of like the last straw, the one that really made me fear for my own mortality. But I feel anger and frustration moreso than fear. It's hard to explain. I don't want to fucking die!
Oh, and today already sucked as I spent it with a fucking fever that went up and down, blood cultures, and more x-rays. Yay.
Seriously? FML.
I don't like these odds. Some days I feel more positive than others but something I saw mentioned on TV tonight during a hockey game about a 29-year-old who lost her battle with leukemia...I don't know, it was kind of like the last straw, the one that really made me fear for my own mortality. But I feel anger and frustration moreso than fear. It's hard to explain. I don't want to fucking die!
Oh, and today already sucked as I spent it with a fucking fever that went up and down, blood cultures, and more x-rays. Yay.
Seriously? FML.
Friday 22 March 2013
Wheeeeeeeeelchair! :P
I got a new mouth ulcer last week and FUCK does it hurt. Today the pain was just unbearable but as I'm neutropenic, the nurses can't give me anything except painkillers. I got a shot of dilaudid and it worked for about twenty minutes, after that it hurt like hell to talk so I just mimed and whispered and wrote on paper. I was high as all hell though (well, this IS dilaudid we're talking about) and I had to go get an X-ray, so the transport guy had to bring me via wheelchair down to the 4th floor to the X-ray ward and let me tell you, getting pushed around on a wheelchair while strung out on dilaudid is a LOT of fun. You know those dreams where it feels like you're flying? It was kind of like that. Good times!
Well, when I came back from my X-ray my mouth was still hurting, so they gave me lidocaine in a little shot glass. I'm going to try to remember to take a picture of the next dosage as it truly does look like a shooter of some delicious type of alcohol. Anyway, THAT finally worked, but boy does it feel weird, as it numbs your entire mouth, tongue included. o_O But whatever. It works. I can take it every 4 hours, so come 10:30, damn straight I'm having another!
Well, when I came back from my X-ray my mouth was still hurting, so they gave me lidocaine in a little shot glass. I'm going to try to remember to take a picture of the next dosage as it truly does look like a shooter of some delicious type of alcohol. Anyway, THAT finally worked, but boy does it feel weird, as it numbs your entire mouth, tongue included. o_O But whatever. It works. I can take it every 4 hours, so come 10:30, damn straight I'm having another!
Wednesday 20 March 2013
ARGH!!
I am so angry! In my Dead Celebrities post, I wrote this:
The other performer is Minako Honda, an 80s pop star who turned into a very successful Japanese Broadway actress. She was diagnosed with acute myelogenous leukemia (so, NOT the same kind as mine) in January of 2005 after feeling short of breath (well well) at a concert. She kept getting treatment and kept having relapses and died seven months later. She was only 38.
I found out today that acute myelogenous leukemia is the same thing as acute myeloid leukemia, so it IS the same type as mine! I am SO ANGRY from finding this out. Not scared, not worried, but ANGRY. So pissed off. I hate being angry in the hospital, there's NOTHING to do with my anger. Well, except write, I guess. It's better than nothing.
Dammit, Minako-san! No offense lady, you were AWESOME, but I am NOT having remotely the same fate as you. I REFUSE. >:/
Slight headache? HAVE SOME OPIATES!!!!!!! o_O
lol, I had the following conversation with my (awesome) nurse through the bathroom door (which made it weirder somehow):
My nurse: Hey, how's your headache? I can't give you tylenol because it might mask symptoms of an infection. We can give you dilaudid instead!
Me: Uhhhh....wow, no, that's really quite OK! My headache's really not THAT bad, I'll just wait it out.
Nurse: Oh, you don't have to do that! How about codeine? Have you ever tried that?
Me: Wow, these are really strong meds. My headache's really not a big problem. It's OK.
Nurse: Oh, codeine's really not that strong. It's fine. I mean, your body will turn it into morphine, but it's OK!
Me: ..............I think I'm OK for now. But if it gets worse can I let you know?
Nurse: Of course! You can change your mind at any time.
Now it's been a couple hours since that conversation and my head still hurts quite a bit so I'm thinking, fuck it, I'll just take the damn codeine. I think I need to make a list of all the new meds I'm trying. lol having cancer is gonna turn me into a druggie. :P
My nurse: Hey, how's your headache? I can't give you tylenol because it might mask symptoms of an infection. We can give you dilaudid instead!
Me: Uhhhh....wow, no, that's really quite OK! My headache's really not THAT bad, I'll just wait it out.
Nurse: Oh, you don't have to do that! How about codeine? Have you ever tried that?
Me: Wow, these are really strong meds. My headache's really not a big problem. It's OK.
Nurse: Oh, codeine's really not that strong. It's fine. I mean, your body will turn it into morphine, but it's OK!
Me: ..............I think I'm OK for now. But if it gets worse can I let you know?
Nurse: Of course! You can change your mind at any time.
Now it's been a couple hours since that conversation and my head still hurts quite a bit so I'm thinking, fuck it, I'll just take the damn codeine. I think I need to make a list of all the new meds I'm trying. lol having cancer is gonna turn me into a druggie. :P
In which I find out my life expectancy
Today my doctor came in with the not-so-great extensive results from my bone marrow biopsy last month. Not-so-great, but it could be worse. It turns out the level of my cancer is "intermediate". So. Basically? I have a 40% chance of still being alive in 3 years. If I get a successful stem cell transplant, my chances of still being alive at the point go up to 50-55%. Not great, but as my doctor pointed out, things could be much, much worse. I'm basically right in the middle. Something else I found out is that stem cell transplants can actually be quite dangerous--there are a lot of risks involved that can result in death. Lovely. He told me it's completely up to me if I want the transplant, but I definitely want one if it's going to raise my chances of survival by 15%! Besides, I was under the impression I was getting one anyway. Originally they were going to wait until they found out if my sister was a match, but they're no longer waiting for that. They're going to start searching the data banks as soon as I give my written consent. They didn't tell me when they're giving me the forms---it better be soon! I'm ready to give my consent right now, dammit!
I also found out some other stuff about my cancer. I've only had it for a few months--that's how fast and aggressive it is. Wow. That makes sense to me, as it was a few months ago when I first started to feel short of breath.
Also, they have no idea what caused it. The number one cause for leukemia is age; the average age to develop my kind of leukemia is apparently 68. I'm only 32, so obviously that's not the reason. Another possibility for developing leukemia is being exposed to industrial chemicals, or being treated for other cancers, neither of which apply to me. So no one has any idea what caused my leukemia. As my doctor pointed out, lung cancer is caused by too much smoking, liver cancer is caused by too much drinking, diabetes is caused by not eating properly, but leukemia is caused by ????????. I like the analogy he gave--it's like the cancer opened up a phone book, chose a random name, and said, "YOU!"
This whole thing about being so young to develop leukemia should work in my favour. He said age is really on my side. Also, I don't have many mutated genes, so that should help in finding a stem cell match. If I can get a transplant and if the transplant goes well, and if I can make it to three years, I have a good chance of living a LOT longer. So let's do this!
I also found out some other stuff about my cancer. I've only had it for a few months--that's how fast and aggressive it is. Wow. That makes sense to me, as it was a few months ago when I first started to feel short of breath.
Also, they have no idea what caused it. The number one cause for leukemia is age; the average age to develop my kind of leukemia is apparently 68. I'm only 32, so obviously that's not the reason. Another possibility for developing leukemia is being exposed to industrial chemicals, or being treated for other cancers, neither of which apply to me. So no one has any idea what caused my leukemia. As my doctor pointed out, lung cancer is caused by too much smoking, liver cancer is caused by too much drinking, diabetes is caused by not eating properly, but leukemia is caused by ????????. I like the analogy he gave--it's like the cancer opened up a phone book, chose a random name, and said, "YOU!"
This whole thing about being so young to develop leukemia should work in my favour. He said age is really on my side. Also, I don't have many mutated genes, so that should help in finding a stem cell match. If I can get a transplant and if the transplant goes well, and if I can make it to three years, I have a good chance of living a LOT longer. So let's do this!
I hate my IV machine
I have a headache from not sleeping well, as usual. I often sleep 8-9 hours a night, but it's not good sleep. Either I have nightmares (last night I had MULTIPLE nightmares, ugggh that was unpleasant as all hell), or my stupid IV machine goes off. Sometimes I take half a sleeping pill to fall asleep, and it knocks me out, but it works a little too well--if my IV machine starts beeping in the middle of the night, I'll hear it in my sleep, but I won't be able to wake myself up to press the bell to call the nurse to come turn it off. It's so annoying! The night before last, I tried to wake myself up over the course of a half hour. A half hour of that fucking beeping. OMG. A couple of times I managed to wake myself up, but when I did, I fell right back asleep before I could press the bell. And when I finally DID wake myself up completely, it took another 15 minutes before a nurse came to turn off the beeping. That was a great night.
I really, really hate my IV machine. On top of the annoying sounds it makes, it's so big and clunky and really a GIGANTIC pain in the ass to lug around. Dragging it with me to the bathroom is no fun at all, and trying to maneuver around the room with it is close to impossible. The way my room is configured, there's very little space between my bed and the table next to the wall, the machine that takes my vitals, and the cupboard, so getting from one end of the room to the other is close to impossible. It's beyond frustrating. Sometimes I get so aggravated that I just smash the IV machine through anything that's in my way, which has nearly causes it to fall down, which would be terrible if it actually happened for a number of reasons. Arrrghhhhh.
Anyway. I've said it before and I'll say it again--thank the gods for Jpop!
Ughhhhh so tired. Maybe I should take a nap. But I'll just end up being disturbed by people coming in here, so maybe not.
I really, really hate my IV machine. On top of the annoying sounds it makes, it's so big and clunky and really a GIGANTIC pain in the ass to lug around. Dragging it with me to the bathroom is no fun at all, and trying to maneuver around the room with it is close to impossible. The way my room is configured, there's very little space between my bed and the table next to the wall, the machine that takes my vitals, and the cupboard, so getting from one end of the room to the other is close to impossible. It's beyond frustrating. Sometimes I get so aggravated that I just smash the IV machine through anything that's in my way, which has nearly causes it to fall down, which would be terrible if it actually happened for a number of reasons. Arrrghhhhh.
Anyway. I've said it before and I'll say it again--thank the gods for Jpop!
Ughhhhh so tired. Maybe I should take a nap. But I'll just end up being disturbed by people coming in here, so maybe not.
Tuesday 19 March 2013
And if you go chasing rabbits...
Holy antihistamines, Batman! Hydroxyzine + Benadryl = being almost too high to type. It sure feels pleasant though, I'm not gonna lie! Hahahahaha. It goes well with the music I'm listening to and the snow falling outside.
Well, lots of good news today--I found out I don't have an infection, I got my results from the cardiogram and found out my heart is doing fine, and I'm out of Isolation. Good stuff! So far today is much better than yesterday.
My dreams were hella weird, as usual. I should start writing them down 'cause they are really fucking insane.
Well, lots of good news today--I found out I don't have an infection, I got my results from the cardiogram and found out my heart is doing fine, and I'm out of Isolation. Good stuff! So far today is much better than yesterday.
My dreams were hella weird, as usual. I should start writing them down 'cause they are really fucking insane.
Monday 18 March 2013
Crap day
Today has been a crappy day. Being put in Isolation. Chest pain and dizziness. They gave me another cardiogram, and I don't find out the results until tomorrow morning. I hate waiting! They looked at my heart quite closely before the chemo, as chemo is quite hard on the heart. Apparently I have a perfectly healthy heart, so hopefully that description still stands. Blah! I hate not knowing what's happening to me! The chest pains are nowhere near as bad now, but I'm still a tad lightheaded and of course a little anxious about the cardiogram results.
I've been bombarded with gifts since I've gotten here. Not just small gifts either, but really expensive ones, too. I don't even know what to say to people. I mean, I say "thank you", but that doesn't quite cut it. I'm so grateful for my friends and family, it's overwhelming! As a result, my hospital room is starting to look like a Mac store. I guess I'm officially a Mac chick now. Hahahaha. All I can think of is this awesomeness:
Oh wait. I was going to link to a really hilarious anti-Mac article from one of my favourite websites, The Best Page in the Universe, but it's BLOCKED from the hospital's server! THIS is the message I get:
Site blocked. www.thebestpageintheuniverse.net is not allowed on this Patient Internet Network.
As if cancer hasn't been making me moody enough, now I'm really angry.
I've been bombarded with gifts since I've gotten here. Not just small gifts either, but really expensive ones, too. I don't even know what to say to people. I mean, I say "thank you", but that doesn't quite cut it. I'm so grateful for my friends and family, it's overwhelming! As a result, my hospital room is starting to look like a Mac store. I guess I'm officially a Mac chick now. Hahahaha. All I can think of is this awesomeness:
Oh wait. I was going to link to a really hilarious anti-Mac article from one of my favourite websites, The Best Page in the Universe, but it's BLOCKED from the hospital's server! THIS is the message I get:
Site blocked. www.thebestpageintheuniverse.net is not allowed on this Patient Internet Network.
This site was categorized in: Humor, Blogs, Tasteless
Are you fucking kidding me?! This isn't a school where children are going to use the internet and maybe see something they shouldn't. What the everloving fuck.
As if cancer hasn't been making me moody enough, now I'm really angry.
Isolation
They're scared I maaaay have an infection so I'm stuck in Isolation. All that means is that whoever comes in here needs to wear a mask, gown, and gloves, and if leave the room I gotta do the same. Fuck that. I'll just stay here and internet. I guess that means no shower today. I can't take a shower very well by myself--I need Mike to help me--so I guess I'll wait til I'm out of Isolation. Good. I don't feel like taking a shower anyway. It's such a long and exhausting process in this state. Fuuuuck that.
On the plus side, I'm not allowed in the family room, which is where my lunch is, so I get to just sit here on my ass and play around on the internet and play DS while the nurses go fetch my lunch and warm it up for me, etc. Bring me my stuff, minions! Ha!
Last night I read blogs of cancer patients. Except I fixated on the blogs of those who didn't make it. I don't know why I did that. Morbid curiosity, I guess. But once I started doing it, I couldn't stop! It wasn't fun at all. I wish I had thought of a better way to spend my time, but it's too late now--what's been read cannot be unread.
Thank the gods for good music. I'm listening to Final Fantasy and jpop at the moment, and it's FANTASTIC. <3
On the plus side, I'm not allowed in the family room, which is where my lunch is, so I get to just sit here on my ass and play around on the internet and play DS while the nurses go fetch my lunch and warm it up for me, etc. Bring me my stuff, minions! Ha!
Last night I read blogs of cancer patients. Except I fixated on the blogs of those who didn't make it. I don't know why I did that. Morbid curiosity, I guess. But once I started doing it, I couldn't stop! It wasn't fun at all. I wish I had thought of a better way to spend my time, but it's too late now--what's been read cannot be unread.
Thank the gods for good music. I'm listening to Final Fantasy and jpop at the moment, and it's FANTASTIC. <3
Sunday 17 March 2013
And so it begins....
My hair started falling out! It's been one week and two days since I've finished chemo, so it was only a matter of time. Weird shit. I'm going to get a wig when I leave here, but while I'm in the hospital I obviously won't need one. Soon I'll be wearing bandanas though! Luckily I already have so many of them, I'll have to get Mike to wash them and bring them here.
I often hear a happy-sounding chime followed by a recording going, "Attention, attention. Code Blue! Code Blue in (floor/room)." I found out today that Code Blue is someone crashing (no longer breathing, cardiac arrest, extremely high blood pressure, etc.). I hear it every second day or so. Now I know what's happening when I hear it. Creepy. I wish the chime that accompanied it didn't sound so cheerful; it makes it even more off-putting somehow. o_O
I often hear a happy-sounding chime followed by a recording going, "Attention, attention. Code Blue! Code Blue in (floor/room)." I found out today that Code Blue is someone crashing (no longer breathing, cardiac arrest, extremely high blood pressure, etc.). I hear it every second day or so. Now I know what's happening when I hear it. Creepy. I wish the chime that accompanied it didn't sound so cheerful; it makes it even more off-putting somehow. o_O
Drugs and dead celebrities
One of the only pluses (if you can even call it that) of being sick is free, legal, safe drugs. Dilaudid is an interesting painkiller I've been given a few times since I've been in the hospital. In pill form it does absolutely nothing for me (seriously, it's like taking children's regular-strength tylenol or something), but injected? Hooo boy, it's a helluva drug!
Right now I'm in the process of receiving a blood transfusion, which is often preceded by an IV drip of Benadryl. Benadryl is a nice, cozy high, and seeing as it's St Patrick's Day today and I'm stuck in here rather than partying on the streets getting drunk with my friends, it's nice to at least be buzzed. :P However, the problem with Benadryl is that once the high wears off, the jittery, antsy, restless legs 'kick' in (sorry for the pun, but it's too accurate!). And right now I'm at that stage. YUCK.
On the....strange and/or positive side of things (not sure which adjective to use here), I'm feeling unusually brave and indestructible today. To the point that I finally googled two Japanese performers whose work I really enjoy....who I know both died after being diagnosed with leukemia, both around my age. When I was diagnosed, I thought of the two of them immediately. I wanted to google them to read the details of their deaths; how did they die exactly--was it the leukemia itself or complications thereof? How long after their diagnosis did they die? What kind of leukemia did they have? But I was much too terrified to look up the info, as one thing I clearly remembered about both of them was that they didn't live all that long after their diagnosis. :(
One of the performers in question is Shiho Niiyama. She played Seiya, Sailor Starfighter in the Sailor Stars season of Sailor Moon. I clearly remember when she died, in February of 2000; I was so shocked and so sad as Sailor Moon is one of my absolute favourite TV series of all time, and she was only 30 when she died. She had a TON of other notable anime roles, but nothing tops Sailor Moon for me. Well, I looked her up today and she was diagnosed with leukemia (not sure what kind) in 1998, and died in 2000 from complications from pneumonia.
The other performer is Minako Honda, an 80s pop star who turned into a very successful Japanese Broadway actress. She was diagnosed with acute myelogenous leukemia (so, NOT the same kind as mine) in January of 2005 after feeling short of breath (well well) at a concert. She kept getting treatment and kept having relapses and died seven months later. She was only 38.
Anyway, I read this info today with no fear or feeling of doom at all. I refuse to have the same fate as them, I simply refuse to. I feel stubbornly confident and big-headed over this. At least today I do. I guess that feeling can change from day to day, as my emotions in general do. The doctors warned me from the beginning it would be like this. A rollercoaster of emotions or whatever. Well, it makes sense.
Anyway, I wish I could have green beer. At least I'm wearing green socks today!
Right now I'm in the process of receiving a blood transfusion, which is often preceded by an IV drip of Benadryl. Benadryl is a nice, cozy high, and seeing as it's St Patrick's Day today and I'm stuck in here rather than partying on the streets getting drunk with my friends, it's nice to at least be buzzed. :P However, the problem with Benadryl is that once the high wears off, the jittery, antsy, restless legs 'kick' in (sorry for the pun, but it's too accurate!). And right now I'm at that stage. YUCK.
On the....strange and/or positive side of things (not sure which adjective to use here), I'm feeling unusually brave and indestructible today. To the point that I finally googled two Japanese performers whose work I really enjoy....who I know both died after being diagnosed with leukemia, both around my age. When I was diagnosed, I thought of the two of them immediately. I wanted to google them to read the details of their deaths; how did they die exactly--was it the leukemia itself or complications thereof? How long after their diagnosis did they die? What kind of leukemia did they have? But I was much too terrified to look up the info, as one thing I clearly remembered about both of them was that they didn't live all that long after their diagnosis. :(
One of the performers in question is Shiho Niiyama. She played Seiya, Sailor Starfighter in the Sailor Stars season of Sailor Moon. I clearly remember when she died, in February of 2000; I was so shocked and so sad as Sailor Moon is one of my absolute favourite TV series of all time, and she was only 30 when she died. She had a TON of other notable anime roles, but nothing tops Sailor Moon for me. Well, I looked her up today and she was diagnosed with leukemia (not sure what kind) in 1998, and died in 2000 from complications from pneumonia.
The other performer is Minako Honda, an 80s pop star who turned into a very successful Japanese Broadway actress. She was diagnosed with acute myelogenous leukemia (so, NOT the same kind as mine) in January of 2005 after feeling short of breath (well well) at a concert. She kept getting treatment and kept having relapses and died seven months later. She was only 38.
Anyway, I read this info today with no fear or feeling of doom at all. I refuse to have the same fate as them, I simply refuse to. I feel stubbornly confident and big-headed over this. At least today I do. I guess that feeling can change from day to day, as my emotions in general do. The doctors warned me from the beginning it would be like this. A rollercoaster of emotions or whatever. Well, it makes sense.
Anyway, I wish I could have green beer. At least I'm wearing green socks today!
Saturday 16 March 2013
Surreality & lack of contact
Going from hanging out with friends watching DVDs and playing video games to suddenly and seemingly randomly being hospitalized with cancer is a very surreal experience indeed. And that's a huge understatement. I've been in the hospital for two and a half weeks now and it all still feels somewhat surreal. Sometimes my dreaming life feels like the real one. How weird is that?
Something that really sucks (well, that's from a long list indeed) is that I can't hug or touch anyone as I have no immune system left at the moment, so I can't risk picking up any germs, bacteria that could cause infections, etc. Red Dwarf is one of my favourite TV shows of all time (fellow fans may recognize the reference to the first book in the title of this blog) and when I'd watch it I always wondered what it would like to be Rimmer (a hologram), never being able to touch anyone, never being able to get a hug from anybody if he needed it. Now I know what it feels like and it's really, really, really terrible. I can't even cuddle up with my own husband, ffs. And I need to do so more badly now than ever. What an annoyingly crappy unfair position to be in.
I can't hug anyone who comes to see me, I can't hug anyone to thank them for the gifts they bring me....ohh, that's another thing---gifts! I've gotten so many. I'm so grateful and happy for them all, but omg. It's overwhelming. I'm not used to this and it almost makes me feel uncomfortable, getting showered with so many presents. It's great, of course, but it takes some getting used to. Does that sound weird? I've gotten so many adourable stuffed animals. I'm not allowed to touch them, but I can at least look at them. They're all up on a shelf in the room, looking over me. Yay for that, at least!
Something that really sucks (well, that's from a long list indeed) is that I can't hug or touch anyone as I have no immune system left at the moment, so I can't risk picking up any germs, bacteria that could cause infections, etc. Red Dwarf is one of my favourite TV shows of all time (fellow fans may recognize the reference to the first book in the title of this blog) and when I'd watch it I always wondered what it would like to be Rimmer (a hologram), never being able to touch anyone, never being able to get a hug from anybody if he needed it. Now I know what it feels like and it's really, really, really terrible. I can't even cuddle up with my own husband, ffs. And I need to do so more badly now than ever. What an annoyingly crappy unfair position to be in.
I can't hug anyone who comes to see me, I can't hug anyone to thank them for the gifts they bring me....ohh, that's another thing---gifts! I've gotten so many. I'm so grateful and happy for them all, but omg. It's overwhelming. I'm not used to this and it almost makes me feel uncomfortable, getting showered with so many presents. It's great, of course, but it takes some getting used to. Does that sound weird? I've gotten so many adourable stuffed animals. I'm not allowed to touch them, but I can at least look at them. They're all up on a shelf in the room, looking over me. Yay for that, at least!
Friday 15 March 2013
Introduction time!
The first post to a new blog or social medium is always the most difficult as I never know what to say. I guess I'll just introduce myself for now. I'm Marina, I'm 32, and I'm a teacher, or at least I WAS a teacher until I got stuck being hospitalized with cancer. Acute myeloid leukemia, to be exact.
At the end of February, I had horrible mouth pain from a mouth ulcer and sudden and random gum issues that wouldn't go away that turned into what felt like the flu. I thought at first the flu-like symptoms were a side effect of the antibiotics I was taking for the gum problems, but then I started becoming constantly short of breath. At first I didn't pay much attention to that as I had been feeling short of breath for a few months now, and I've had asthma as a kid and even though it hasn't bothered me in YEARS, I just figured that's what it was and kept telling myself that I had to go pick up a new asthma pump one of these days.
Well, one day I had no energy at all and ended up sleeping the entire day--yup, all 24 hours of it. I got up the next day, took a shower, became extremely short of breath again, and noticed my fingernails were blue. In a panic I jumped out of the shower and saw my gums and lips turning grey. Luckily my husband was home and he called a taxi and we rushed to the ER of the Royal Victoria Hospital. (We didn't bother with an ambulance as we live mere minutes from the hospital.) I got seen pretty fast as I was short of breath, and once I was laid down on a stretcher I was able to catch my breath again and I felt much better.
The doctors thought it might be a blood clot and did a blood test which resulted in some SERIOUS concern from them, to the point that they redid the test, telling me they must have made a mistake, as the results didn't make sense. The second test lead them to come running back, rushing me into isolation where my husband had to wear a gown and mask to stay with me and I was immediately hooked up to IV. The doctors who came to see me were eerily concerned and serious and told me I was extremely, extremely sick and would have to stay at the hospital for a few days.
I was very confused as I felt mostly fine and had no idea what was going on. As it turned out, my blood cell counts were ridiculously, dangerously low, and I would have to have a biopsy done. They prepared a room for me on the hematology/oncology floor where I got a blood transfusion, and the next morning I got my bone marrow extracted for the biopsy. They had told me results could take days, but it only took them a few hours to discover it was leukemia.
So now I'm trying to adjust to this brand new life out of nowhere. I've already had one round of chemo (it lasted 7 days), and I have to wait here for a few more weeks until my immune system grows back so that they can do another biopsy to see if it worked. Apparently the first wave of chemo doesn't often work, so it looks like I'll be stuck here for awhile! So I might as well start a blog.
Well, that's my story of how I ended up here. That's it for my first post!
At the end of February, I had horrible mouth pain from a mouth ulcer and sudden and random gum issues that wouldn't go away that turned into what felt like the flu. I thought at first the flu-like symptoms were a side effect of the antibiotics I was taking for the gum problems, but then I started becoming constantly short of breath. At first I didn't pay much attention to that as I had been feeling short of breath for a few months now, and I've had asthma as a kid and even though it hasn't bothered me in YEARS, I just figured that's what it was and kept telling myself that I had to go pick up a new asthma pump one of these days.
Well, one day I had no energy at all and ended up sleeping the entire day--yup, all 24 hours of it. I got up the next day, took a shower, became extremely short of breath again, and noticed my fingernails were blue. In a panic I jumped out of the shower and saw my gums and lips turning grey. Luckily my husband was home and he called a taxi and we rushed to the ER of the Royal Victoria Hospital. (We didn't bother with an ambulance as we live mere minutes from the hospital.) I got seen pretty fast as I was short of breath, and once I was laid down on a stretcher I was able to catch my breath again and I felt much better.
The doctors thought it might be a blood clot and did a blood test which resulted in some SERIOUS concern from them, to the point that they redid the test, telling me they must have made a mistake, as the results didn't make sense. The second test lead them to come running back, rushing me into isolation where my husband had to wear a gown and mask to stay with me and I was immediately hooked up to IV. The doctors who came to see me were eerily concerned and serious and told me I was extremely, extremely sick and would have to stay at the hospital for a few days.
I was very confused as I felt mostly fine and had no idea what was going on. As it turned out, my blood cell counts were ridiculously, dangerously low, and I would have to have a biopsy done. They prepared a room for me on the hematology/oncology floor where I got a blood transfusion, and the next morning I got my bone marrow extracted for the biopsy. They had told me results could take days, but it only took them a few hours to discover it was leukemia.
So now I'm trying to adjust to this brand new life out of nowhere. I've already had one round of chemo (it lasted 7 days), and I have to wait here for a few more weeks until my immune system grows back so that they can do another biopsy to see if it worked. Apparently the first wave of chemo doesn't often work, so it looks like I'll be stuck here for awhile! So I might as well start a blog.
Well, that's my story of how I ended up here. That's it for my first post!
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