I can't remember if I mentioned this here or not, but a really fucked-up thing that's happened since I've been diagnosed with leukemia is the way my dreams have changed. The nightmares. Oh crap, the nightmares. I haven't had any in awhile but they've started up again. I've had two this week. One of them involved me (possibly) drowing someone's baby (I say 'possibly' as the baby was unconscious and there was a chance it'd be OK but things certainly didn't look good), and the other was this morning, when I woke up and went back to bed. I had one bad dream where I got into an argument with my husband about me getting a job, which left me really upset, and then I had this horrible nightmare where I was one of the characters from Lost (Juliet, for any Lost fans who may be reading this, lol).
Now, this nightmare REALLY freaked me the fuck out, so I'm going to write it down here. Writing this shit out makes me feel better. Also, some of my fucked-up dreaming is a cancer-related thing, so I figure it makes sense to write about my dreams here, at least once in awhile. Plus, some people have asked me what kind of dreams I've had related to my cancer, so here's one! So, if you're one of those people who doesn't like to read about dreams, especially in great detail, you're going to want to skip this entry.
So, we had this really unreliable plan to escape the Island, which was to jump off a cliff while wearing lifejackets into the water. But the cliff was so high that when we hit the water, we'd end up unconscious, so Jack (who's a doctor, for those not familiar with the show) would resuscitate us (if he could) and we'd be able to escape that way by attaching balloons on us or something like that. The cliff was really high and the fall was really harsh so our saftey wasn't guaranteed; there was no way of knowing for sure if he'd be able to wake us up again once we hit the water. But it was our only chance of escaping the Island, so we did it, even though we knew our chances weren't that great. So we hit the water and it was harrrsh, and sometimes I was watching it like a show and sometimes I saw it from Juliet's point of view 'cause that's just how dreams are. Anyway, I was the last one to wake up and I was coughing up blood from the impact of hitting the water, and I started slipping in and out of consciousness which felt like blacking out, and because of the life jackets and broken bones from hitting the water from so high up, most of us were floating on the water looking upwards. I was looking up at the clouds and blinked, and all of the sudden it was night and I was looking up at stars, and the most horrible sense of terror came over me as I realized the reason it seemed to have passed from day into night in a split second was because I had passed out for a really long time. And I felt worse, and I was freezing, and I realized I was dying and I was so scared, and I was just floating in the fucking sea, staring up in the sky, and I was dying, and everyone was around me and they had no idea what I was feeling and they were trying to save me, and it was so strange to see them trying to help me when I knew there was nothing they could do because I was about to die. I distinctly remember being happy that was surrounded by my friends and that I didn't have to die alone in the water, but I was so terrified, and I suddenly started gasping, and I realized, well, this is it, I've got to tell them, they can stop trying to save me. I tried to get Kate's attention, I tried to talk, and I could only whisper, so I started talking, and in real life, I woke up to the sound of my voice, saying "This is the end." I was SO RELIEVED to be awake in my bed, but really fucking freaked out from the dream. And freaked out due to me waking up to the sound of my own voice saying "this is the end", referring to myself thinking I was about to die. I just lay in bed for awhile before getting up because that was seriously some fucked-up heavy shit right there.
Anyway, it's getting onto 1:30 AM and I'm still thinking about that nightmare, it's still super vivid in my head. And I gotta say, it helps to have written it out. I had a lot of dreams this morning, but that was the big one. FREAKY SHIT, MAN.
Sunday 30 June 2013
Friday 28 June 2013
STILL neutropenic
What the subject line says.
Yup, still neutropenic. Quite. How is this possible?! I mean, I know how it's possible, but...ughhh. I had to cancel ALL my plans this weekend--my belated birthday party plans, which was a night at Cine-Express on Saturday, and a potluck on the mountain on Sunday. This is, IIRC, the third time I've canceled my own birthday celebrations I keep trying to hold this year. And worst of all, I was supposed to go to Ottawa on Monday for Canada Day. Sooo not gonna happen now. I'm so upset, and that's an understatement.
I've decided to hold off on organizing any more events until September-ish. I'm supposed to have two more rounds of chemo--one in July and one in August. So if all goes well, by September I should have nothing fucking up my daily and/or social life too badly. Maybe I can actually have some fun then.
For now, back to house arrest. I am going to go crazy soon.
Yup, still neutropenic. Quite. How is this possible?! I mean, I know how it's possible, but...ughhh. I had to cancel ALL my plans this weekend--my belated birthday party plans, which was a night at Cine-Express on Saturday, and a potluck on the mountain on Sunday. This is, IIRC, the third time I've canceled my own birthday celebrations I keep trying to hold this year. And worst of all, I was supposed to go to Ottawa on Monday for Canada Day. Sooo not gonna happen now. I'm so upset, and that's an understatement.
I've decided to hold off on organizing any more events until September-ish. I'm supposed to have two more rounds of chemo--one in July and one in August. So if all goes well, by September I should have nothing fucking up my daily and/or social life too badly. Maybe I can actually have some fun then.
For now, back to house arrest. I am going to go crazy soon.
Tuesday 25 June 2013
Transplants and chemo and all that stuff
I saw my doctor today, and he was more optimistic than usual. Meaning he didn't just sit there and spit out percentages and possibilities, so that was nice. And he seemed more upbeat than he usually does. Yay. Anyway, I found out a bunch of stuff:
-I'm still neutropenic. STILL. Even though I finished my last bout of chemo three weeks ago. As it turns out, though, this is normal; each time I get chemo, the longer the neutropenic period is, as my body gets "more & more beat-up". So, house arrest continues (sigh), BUT my counts are coming back up. I'm not yet quite sure what this means for all the partying I had planned for this weekend. GET ME OUT OF THIS APARTMENT GODSDAMMIT. -__- Cabin fever is eating me from the inside!
-Now, this is pretty interesting. A potential donor for me was found!.... but only matched me at 8/10. (The lowest a match should be is 9/10.) According to my doctor, given that a transplant won't increase my chances of survival by THAT much, added to the risk of a 8/10 match plus the fact that transplants are risky in general, he decided that it's a no-go and opted for more chemo instead; one round the second week of July, and one more in August, then they stop.
-He said they would continue to search for a donor, but if 3-4 years go by and I don't relapse, they would stop looking, as generally no relapse in 3-4 years means a relapse isn't likely to happen again!
-Overall, my doc says he's pleased with the way things are going and that I react to chemo well. When I pointed my horror to nearly ending up in the ICU last time and how going into septic shock was the most horrible experience of my life, he said, "well, these are risks of chemotherapy." NOT rudely, NOT condescendingly, not dissmissive...just matter-of-factly. I'm still scared to death of chemo, but he made me feel better somehow. Sorta. It just...it feels good to know that, as scary and potentially deadly as it was, it was a on par with how chemo can be. It'd be a lot worse if the doctors freaked out and said "This NEVER happens!" and/or had to stop the chemo because of it, or something.
Like I said earlier, it was nice to see my doctor being optimistic. The best part is, he talked about me being alive in 3-4 years as some kind of real possibility instead of some kind of unattainable goal. It's a nice change.
-I'm still neutropenic. STILL. Even though I finished my last bout of chemo three weeks ago. As it turns out, though, this is normal; each time I get chemo, the longer the neutropenic period is, as my body gets "more & more beat-up". So, house arrest continues (sigh), BUT my counts are coming back up. I'm not yet quite sure what this means for all the partying I had planned for this weekend. GET ME OUT OF THIS APARTMENT GODSDAMMIT. -__- Cabin fever is eating me from the inside!
-Now, this is pretty interesting. A potential donor for me was found!.... but only matched me at 8/10. (The lowest a match should be is 9/10.) According to my doctor, given that a transplant won't increase my chances of survival by THAT much, added to the risk of a 8/10 match plus the fact that transplants are risky in general, he decided that it's a no-go and opted for more chemo instead; one round the second week of July, and one more in August, then they stop.
-He said they would continue to search for a donor, but if 3-4 years go by and I don't relapse, they would stop looking, as generally no relapse in 3-4 years means a relapse isn't likely to happen again!
-Overall, my doc says he's pleased with the way things are going and that I react to chemo well. When I pointed my horror to nearly ending up in the ICU last time and how going into septic shock was the most horrible experience of my life, he said, "well, these are risks of chemotherapy." NOT rudely, NOT condescendingly, not dissmissive...just matter-of-factly. I'm still scared to death of chemo, but he made me feel better somehow. Sorta. It just...it feels good to know that, as scary and potentially deadly as it was, it was a on par with how chemo can be. It'd be a lot worse if the doctors freaked out and said "This NEVER happens!" and/or had to stop the chemo because of it, or something.
Like I said earlier, it was nice to see my doctor being optimistic. The best part is, he talked about me being alive in 3-4 years as some kind of real possibility instead of some kind of unattainable goal. It's a nice change.
Saturday 15 June 2013
And so the festivities begin...for everyone else.
Festival season has started here in Montreal, and festival season is one of the reasons I chose to move downtown--so I could be in walking distance to all the festivals. This year living so close to them is proving to be a curse rather than a blessing as I'm stuck at home, neutropenic, while it feels like everyone in the world is at the Fringe Fest and/or the St-Laurent street fair. I hate it. I should be grateful to be alive after that fucking septic shock stint in the hospital, but I'm just feeling bitter and crabby that I can't be outside and join everyone in the festivities.
Of course, the weather has to be perfect, too. Or so I hear it is. I refuse to go outside; like last month, I could always go hang out on the balcony, but then I just see everyone having fun, and I can hear festivities from my apartment, so it's like a slap in the face. In fact, even though it's not hot out, I have the A/C going full blast, so the white noise blocks out the sound of everyone outside having fun. I know I sound all emo 'n shit but I really feel lonely and miserable. I'm worried about posting too much about it to Facebook as I don't wanna be a downer to my friends who I genuinely hope are having a good time, but I'm feeling really down so I gotta vent somewhere, and since it's cancer-related I guess my cancer blog is a good place as any. :P
Also, I'm really sick and tired of washing my hands. I feel like my skin is going to rip off! Argh!
I can't wait until it's late enough to take sleeping pills, just so I can get high. How sad is that?
Of course, the weather has to be perfect, too. Or so I hear it is. I refuse to go outside; like last month, I could always go hang out on the balcony, but then I just see everyone having fun, and I can hear festivities from my apartment, so it's like a slap in the face. In fact, even though it's not hot out, I have the A/C going full blast, so the white noise blocks out the sound of everyone outside having fun. I know I sound all emo 'n shit but I really feel lonely and miserable. I'm worried about posting too much about it to Facebook as I don't wanna be a downer to my friends who I genuinely hope are having a good time, but I'm feeling really down so I gotta vent somewhere, and since it's cancer-related I guess my cancer blog is a good place as any. :P
Also, I'm really sick and tired of washing my hands. I feel like my skin is going to rip off! Argh!
I can't wait until it's late enough to take sleeping pills, just so I can get high. How sad is that?
Thursday 13 June 2013
Tales from a cyborg
Whew. Got home yesterday, yay! Today Mike took me for a drive in the SUV he rented for work, so that was fun, as it's a safe-ish way for me to get out of the apartment for a bit. I had to walk one block to get where he parked it, and even though this was over two hours ago, I'm STILL out of breath. Oh, chemo. Unnnghhh. I have so much to do in terms for appealing my rejection for EI illness benefits but I'm too wiped to go look for my papers. This morning I made myself eggs and was knocked out for a good 45 minutes afterwards. I'm getting used to the drill though. I know in a couple of weeks I'll feel fine, bla bla bla.
I have to keep my piccline in as my veins have gotten too weak to poke anymore, so that's really annoying. It's a yucky feeling, as the tubes that stick out on the outside dangle and get in the way of things and are kind of heavy and I feel the tubes (not the piccline itself) at the insertion site and arrrghhh. And showering with it is such a bitch, I can't even explain it. Yesterday Mike and I wrapped it up to prepare me for a shower and it was such a pain in the ass that we mutually decided I don't need to shower daily anymore. :P
I absolutely will not go into public with this fucking thing, so we bought gauze to wrap it up in, and omg it's SO MUCH MORE COMFORTABLE like this! No dangling, no buggy, tugging feeling...the thing is, I'm not supposed to leave it like this as it's supposed to breathe, and I'm supposed to uncover it while I'm at home, but I'll leave it like this for now (what if I were out for a really long time?) as it's just so much more snug and comfortable, it's ridiculous. I'm not sweating, so I feel it's OK...
I have to keep my piccline in as my veins have gotten too weak to poke anymore, so that's really annoying. It's a yucky feeling, as the tubes that stick out on the outside dangle and get in the way of things and are kind of heavy and I feel the tubes (not the piccline itself) at the insertion site and arrrghhh. And showering with it is such a bitch, I can't even explain it. Yesterday Mike and I wrapped it up to prepare me for a shower and it was such a pain in the ass that we mutually decided I don't need to shower daily anymore. :P
I absolutely will not go into public with this fucking thing, so we bought gauze to wrap it up in, and omg it's SO MUCH MORE COMFORTABLE like this! No dangling, no buggy, tugging feeling...the thing is, I'm not supposed to leave it like this as it's supposed to breathe, and I'm supposed to uncover it while I'm at home, but I'll leave it like this for now (what if I were out for a really long time?) as it's just so much more snug and comfortable, it's ridiculous. I'm not sweating, so I feel it's OK...
Tuesday 11 June 2013
Gross
My platelets are super low, which means a paper cut would probably be enough to cause me to bleed out, so I'm currently being prepped for a blood platelet transfusion. Which means benadryl via IV, which means I'm high as fuck. Because of the low platelet level, my pic line site is oozing blood. It's not dangerous, but holy shit is it ever gross. It's so gross that it's fascinating. I can't stop looking at it.
Another super gross thing is that I'm getting so fucking bored and restless in the hospital that I've been certain specific reading 4-chan boards. I don't participate or anything (I would NEVER), just read. And I'm reading horrible, horrible things and I'm enjoying it way too much. I feel kind of guilty to be so entertained by something at someone's expense (I'm watching some horrible bullying transpire), but I'm not partipating in it, I'm simply watching from the sidelines, so it's not like I'm causing any harm anyway. *shrug*
Btw, if you're reading this and don't know what 4-chan is it, trust me: IT'S FOR THE BEST. You're a better person for being uncorrupted.
Anyway. Apparently they're switching my antibiotics from IV to pill form today, and if I handle it OK, I should be able to go home tomorrow. FINALLY! :)
Another super gross thing is that I'm getting so fucking bored and restless in the hospital that I've been certain specific reading 4-chan boards. I don't participate or anything (I would NEVER), just read. And I'm reading horrible, horrible things and I'm enjoying it way too much. I feel kind of guilty to be so entertained by something at someone's expense (I'm watching some horrible bullying transpire), but I'm not partipating in it, I'm simply watching from the sidelines, so it's not like I'm causing any harm anyway. *shrug*
Btw, if you're reading this and don't know what 4-chan is it, trust me: IT'S FOR THE BEST. You're a better person for being uncorrupted.
Anyway. Apparently they're switching my antibiotics from IV to pill form today, and if I handle it OK, I should be able to go home tomorrow. FINALLY! :)
Monday 10 June 2013
Good-doers! (Or is it do-gooders?)
Okay, so like, my friends are awesome and stuff and are donating and doing this leukemia walk thing, check it out:
www.lightthenight.ca
Also, my friend is participating in a blood drive in memory of an individual who was a member of the Leukemia and Lymphoma Society of Canada. It's going to be at St-Mary's Hospital (where I was born, incidentally!) here in Montreal on Monday, June 17th from 10 AM until 4 PM. I won't be able to attend as I'll still be neutropenic, but I'm definitely spreading the word!
In other news, what's there to say? I'm still in the hospital. SO RESTLESS. I just wanna go home already! Bitch, bitch, I know. I should just be grateful that I'm feeling good. I've been keeping myself busy doing internet-y things and playing lots of Zelda on Mike's DS (Link to the Past and Phantom Hourglass).
www.lightthenight.ca
Also, my friend is participating in a blood drive in memory of an individual who was a member of the Leukemia and Lymphoma Society of Canada. It's going to be at St-Mary's Hospital (where I was born, incidentally!) here in Montreal on Monday, June 17th from 10 AM until 4 PM. I won't be able to attend as I'll still be neutropenic, but I'm definitely spreading the word!
In other news, what's there to say? I'm still in the hospital. SO RESTLESS. I just wanna go home already! Bitch, bitch, I know. I should just be grateful that I'm feeling good. I've been keeping myself busy doing internet-y things and playing lots of Zelda on Mike's DS (Link to the Past and Phantom Hourglass).
Saturday 8 June 2013
Shock!
I haven't posted here in awhile, because while I was home and non-neutropenic, I wanted to enjoy myself as much as possible and think about cancer as little as possible. Well, I was re-admitted for chemo round #3 about a week and a half ago and I'm still here in the hospital as I got SUPER sick this time. Yes, I always get sick from the chemo, but this time I got sicker than usual. I got a lung infection, which lead to my body going into septic shock, and let me tell you, that was NOT fun. I almost ended up in the ICU twice. The ICU docs came to see me and they prepped me in case I needed to go, but luckily in the end I was able to stay here in the oncology/hematology ward. The infection was not a result of the chemo, but I was dealing with that at the same time as side effects of the chemo, and omg it was a living nightmare. There are full days that I'm missing from my memory; all I remember from them are flashes and random images and (very super painful) moments, like some kind of nightmare-ish horror movie montage. It was awful. I would never wish this on anybody for any reason. Out of all the hospital stays I've had so far combined, I think that this particular experience has been the worst.
I don't mean to sound full of myself or anything, but I can't believe I went through and survived all that. I'm not gonna lie, I was really wondering for awhile. On one particularly horrible morning, I woke up in an absolute terrorized panic I can't describe, and my heart rate (which is normally around 70 or so) was at 140. So many doctors were sent to my room--not nurses, but doctors, and they were acting very serious and whispering amongst each other in the corner of the room, something that's never happened. I was seriously, honestly terrified that they were going to approach me at some point and tell me I'd had a small heart attack, and/or the chemo had done a number on my heart and that they wouldn't be able to continue with the treatments anymore, or something. Yet here I am, my heart's still beating (and at a normal level), and I'm due for another chemo treatment in July, sooo...we'll see how it goes! I hope they find me a transplant soon though, I really do, 'cause I'm scared there's only so much more of this my body can take. FWIW, I'm only to have 1-2 more rounds of chemo tops anyway. Although getting a transplant requires two goes of chemo as part of the procedure. Holy crap!
Speaking of transplants, when I first arrived at the hospital over a week ago, I was originally sharing a room with a guy who had just had one. But I didn't get to find out much. Not only because I'm anti-social, but also because I was hurried off to isolation, into this private room as soon as I got infected. That's the silver lining, I guess. The private room, I mean.
I'm still in the hospital and am going to be for the next few days. Looks like it's gonna be a 2-week-ish stay in all. I wanna hurry up and get home, not just for obvious reasons, but also because I'm becoming neutropenic and should be completely such by tomorrow, and the longer I stay here in this germ-infested disease tank, the higher my chances of catching something horrible and icky and getting stuck here longer. Blaaaah. I totally understand why I have to stick around though; even though I feel fine, they have to keep an eye on me and make sure I don't get sick again, and they're still feeding me antibiotics by IV, which they've slowly been weaning me off of.
I just can't get over that it's Saturday. It's so weird to miss a few days out of the week like that, because for me, it just WAS Saturday. Ugh. What a week. It's changed me.
I don't mean to sound full of myself or anything, but I can't believe I went through and survived all that. I'm not gonna lie, I was really wondering for awhile. On one particularly horrible morning, I woke up in an absolute terrorized panic I can't describe, and my heart rate (which is normally around 70 or so) was at 140. So many doctors were sent to my room--not nurses, but doctors, and they were acting very serious and whispering amongst each other in the corner of the room, something that's never happened. I was seriously, honestly terrified that they were going to approach me at some point and tell me I'd had a small heart attack, and/or the chemo had done a number on my heart and that they wouldn't be able to continue with the treatments anymore, or something. Yet here I am, my heart's still beating (and at a normal level), and I'm due for another chemo treatment in July, sooo...we'll see how it goes! I hope they find me a transplant soon though, I really do, 'cause I'm scared there's only so much more of this my body can take. FWIW, I'm only to have 1-2 more rounds of chemo tops anyway. Although getting a transplant requires two goes of chemo as part of the procedure. Holy crap!
Speaking of transplants, when I first arrived at the hospital over a week ago, I was originally sharing a room with a guy who had just had one. But I didn't get to find out much. Not only because I'm anti-social, but also because I was hurried off to isolation, into this private room as soon as I got infected. That's the silver lining, I guess. The private room, I mean.
I'm still in the hospital and am going to be for the next few days. Looks like it's gonna be a 2-week-ish stay in all. I wanna hurry up and get home, not just for obvious reasons, but also because I'm becoming neutropenic and should be completely such by tomorrow, and the longer I stay here in this germ-infested disease tank, the higher my chances of catching something horrible and icky and getting stuck here longer. Blaaaah. I totally understand why I have to stick around though; even though I feel fine, they have to keep an eye on me and make sure I don't get sick again, and they're still feeding me antibiotics by IV, which they've slowly been weaning me off of.
I just can't get over that it's Saturday. It's so weird to miss a few days out of the week like that, because for me, it just WAS Saturday. Ugh. What a week. It's changed me.
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