Not writing too much tonight. I'm going to try for an earlier night, so that maybe I'll be more awake during the day.
And also, I just wrote a bunch, and somehow lost it.
Today I got a spinal tap. They drew some spinal fluid and some more bone marrow. They also injected the first chemo stuff into my spinal fluid.
They took off all three of the IVs on my arms, so now they're just using the big one. Today stuff like the usual fluids (salt water and glucose), two units of blood (one quart total), and something else that I can't remember was running through the lovely clear tubing into a vain near my neck (not necessarily at the same time).
Winnifred now has a flamingo wrapped protectively around his neck. Her name is Gladys. I think she's there to keep me from jerking him around too much. But she's pretty cool, so I haven't given her a hard time about it. Also, one of the nurses suggested decorating Winnifred even more. I'm thinking something like a feather boa, if it doesn't get in the way too much.
I feel kind of bad that I haven't been outside for three and a half days. There is a deck, but whenever I feel like going out, it's too late (they close it fairly early, I don't know why). I'm definitely going outside tomorrow, if I can manage.
I hope this port stuff heals up soon. It hurts a lot. I took Tylenol for the first time ever yesterday. And more today. It actually WORKS?! Yeah, it did. That was in place of the kind of opiate that they ordered for me just in case. There's no way I'm taking that unless I'm in serious pain. I hate feeling weird, and they said it would probably make me feel that way.
Today and the next two days are called "Pro-phase". The stuff being put in me doesn't really have side affects. I can't remember what it's doing exactly. On Monday the nastier stuff starts. That's what I'm nervous for.
I played flute for the first time in a week today. It felt soooo good. But I was also really out of practice. I played Mozart a few times and did some long tones and scales. I'm definitely going to keep it up. My room actually has pretty good acoustics!
It was cool seeing my blood pressure change (it went up, I think) when I started playing. I was getting blood at the time, so the cuff was around my upper arm, and a machine checked my vitals automatically every fifteen minutes.
Then Jane came in, and that was awesome. We all (parents were there too) chatted for a while. She gave me Gladys!
Sylvia came this morning, and we got to hang out for a while, which was really good. We kicked my parents out, so they went across the hall and started to vigorously play air hockey. It was quite amusing. They were REALLY going at it.
Anyway, I'm going to at least try to sleep. Good night!
Friday, May 29, 2009
Stylin' in This Outfit
Currently wearing: My pineapple pajama pants (COVERED in very bold, large pineapples, facing all sorts of directions), a light blue hospital gown with darker blue, purple, and red strokes, a pair of towel like socks with grips for walking, my friendship bracelets, and two plastic ID wristbands.
Today was long. But what can I really compare it to anymore? People have said that time runs differently here. And man... it does.
I'll try to get everything written. I'm kind of tired (so we'll see how easy I'll be to understand), but there's no way I'm sleeping before this is done.
It's hard to sleep past 7 AM here. The nurses came in and drew my blood (for tests, routine now, I think). In the middle of the night one came in and tried. She tried both of my IVs, and didn't get much. My vains are extremely stubborn, and multiple people have called them greedy. In the ER on Tuesday, they ended up using baby size IVs and syringes (yes, jokes were made). Anyway, the nurse gave up. Several hours later another one came in and actually got a good sample (I was SO relieved that I didn't need another poke).
I can't entirely remember my morning. I was fasting because I was going getting an IV port put in (explained later), so you don't get any exciting descriptions of hospital breakfast (you'll get some later though, I'm sure).
Kara and some of her family came to visit, and I got all excited and bouncy (as bouncy as one can be when they're attached to stuff). We got to chat a little bit, and be excited, but practically right after they got there Doctor Bruckner (the main Oncologist) came in, and we had to have a conference about the next few months. Visitors couldn't really be in there, so they had to go wait out in the rec room (I think that's where they were...). Sad!
The conference was really interesting, kind of scary, and long. She (Dr. Bruckner) talked us through 16-ish pages of what to expect. Mainly about the types of chemicals (is that the right word for them?) that are going to be inserted into my bloodstream during the next few months. Sososo many. With long and involved names, and purposes, and side affects. First, she talked about how chemotherapy is about poisoning the rapidly dividing cells (Leukemia cells). She also talked about how that poison can kill other cells too, like the good ones. She also talked about A LOT OF STUFF. And I can't remember it all, and I don't think anyone is supposed to.
There are several phases I'll be going through, ranging in length from 3 weeks to something like 180 weeks (I'm not going to be in the hospital that long though!!!). Each phase has cycles, which involve taking specific chemicals on specific days. It's all very neatly planned out (but the Dr. said that they will change it for each case if needed).
There was a very long list of all the known side affects for every single chemical used. They were arranged with rows and columns, a column each for Very Likely, Likely, Not Likely, and Rare (different words were used, though).
So many side affects. Simple ones, complicated ones. And a few of them did have ones that seem really unpleasant listed as "Likely". I don't have the list here right now. I don't really feel like listing them, anyway. But yeah. It is pretty scary.
I had surgery done today, for the first time ever. It was fairly minor, I guess, but the term "surgery" got used, and it felt big. I had an IV port put under my skin, on the right side of my chest. It goes into a fairly large vain (can't remember the name, sorry), and they will use it to get the chemo stuff into my blood. This way I won't be getting poked with IVs forever. It's going to be there for a long time. They say I won't be able to feel it, and that I'll forget it's even there. But it's a pretty strange concept for me, having a piece of something put inside me (I know it happens all the time, and on MUCH bigger and more serious scales, to other people. But this is me, and well... I've never even broken a bone!).
At around 1:30 PM "transport" came (no more nurses playing bumper-beds, this was official!) with another rolling bed, and they took me down to the anesthesia place. Nervous. My wonderful parents came too, and we waited for a while in the pre-anesthesia room. A couple of people came and talked to us a bit about what would happen, and checked my vitals and fun stuff like that. Then, amazingly, Meghan (from the Rochester contra dance) walked in. Turned out she was the anesthesiologist! That made me SO happy. I was really nervous, and it made a huge difference in how I felt just knowing that someone I knew would be there for the whole operation.
So, the surgeon came and talked to us, and answered questions. It was time. I got some injected through my IV, and Meghan said it would make me feel loopy. I felt loopy, as she rolled me through some hallways, and it was pretty fun. And soon I was waking up. I was being rolled back to my lair. Felt very strange.
Not long after I got back, Sarah Kramer and her mom came. I got all happy and bouncy (as bouncy as one can be when they are attached to things AND feeling very strange and not quite un-loopified). It was lovely seeing them. I felt kind of bad that I wasn't my usual self, but I guess there wasn't much I could do.
Something funny happened to my throat and breathing. It felt like my throat was suddenly swollen, and breathing was weird and kind of hard to do. This was all very sudden. I pushed the call-the-nurse-in button, and she arrived. I tried to describe it. It went away fairly quickly, but felt like it could happen again. They had mentioned that I might be nauseous. I didn't think I quite was, but they offered me the medicine they would give if I was (and wanted it). I took a few minutes to process everything, and finally decided to take the pill, since I had a stomach ache anyway, still felt weird, and wanted to be able to actually talk to the Kramers. Felt normal soon.
I can't remember exactly how the rest of the day went...
At one point some of the Pryntz-Nadwornys came: Diana, Brian, Rafi, and Kaniel. Got all happy and bouncy (as bouncy as one... heheh, I'm being repetitive. You know the rest. :P ). I had very awesome time hanging out with all of them. They presented me with a photo album with all sorts of lovely people and crazy-good memories. As well as several notes, which were/are amazing.
Sylvia and Sue brought some necessities over this morning while I was off getting something done to me. These included: A big piece of sky-colored shiny paper to write messages on (on the wall next to my bed), a box of markers, sticky tack (putty for putting paper things on walls), poster tape, a ton of heart-shaped post-it notes, and some more books.
How I feel right now: Weird. Stuff hurts. The places they cut to put in the IV port are really sore (it's hard to move my head around sometimes). But besides those aches and stuff, it's ok. Mentally I feel fine. I feel like I can do this. I was definitely not feeling good all day today. But so far it's been bearable.
Over the last two and a half days (how long I've been here) I've gotten three units (a unit is a pint, so six cups) of blood (other people's blood!) inserted via IV into my system. It made me feel so much better. More energy (sometimes) than I've had for weeks. I've also had several doses of platelets (again, other peoples', I believe). But wow, it's another strange concept I've had to adjust to.
Something I'm really excited about is plastering these walls with anything from anyone who wants to send something. The tan colored paint shall not be visable! People have been asking if there's anything they can do. And I don't really know what to say most of the time, but this is something.
My address is:
Nadine Dyskant-Miller
601 Elmwood Ave.
Rochester, NY 14642
4-1400
Winnifred (in case you missed it in previous posts, he's my IV stand (I knowwww, that's a girl's name. I guess you'll have to deal with it.)) and I have been having some pretty steamy arguments. He doesn't like to walk with me. When we take strolls down the lovely corridors, his wheels stick and he turns in awkward circles, complaining. I've been pretty forceful with him, but I don't think this is how our relationship should be. *Sigh*
Soooo, this turned out to be longer than I expected... I'm really sleepy now, and it's late, so I guess I should go ahead and post this.
Today was long. But what can I really compare it to anymore? People have said that time runs differently here. And man... it does.
I'll try to get everything written. I'm kind of tired (so we'll see how easy I'll be to understand), but there's no way I'm sleeping before this is done.
It's hard to sleep past 7 AM here. The nurses came in and drew my blood (for tests, routine now, I think). In the middle of the night one came in and tried. She tried both of my IVs, and didn't get much. My vains are extremely stubborn, and multiple people have called them greedy. In the ER on Tuesday, they ended up using baby size IVs and syringes (yes, jokes were made). Anyway, the nurse gave up. Several hours later another one came in and actually got a good sample (I was SO relieved that I didn't need another poke).
I can't entirely remember my morning. I was fasting because I was going getting an IV port put in (explained later), so you don't get any exciting descriptions of hospital breakfast (you'll get some later though, I'm sure).
Kara and some of her family came to visit, and I got all excited and bouncy (as bouncy as one can be when they're attached to stuff). We got to chat a little bit, and be excited, but practically right after they got there Doctor Bruckner (the main Oncologist) came in, and we had to have a conference about the next few months. Visitors couldn't really be in there, so they had to go wait out in the rec room (I think that's where they were...). Sad!
The conference was really interesting, kind of scary, and long. She (Dr. Bruckner) talked us through 16-ish pages of what to expect. Mainly about the types of chemicals (is that the right word for them?) that are going to be inserted into my bloodstream during the next few months. Sososo many. With long and involved names, and purposes, and side affects. First, she talked about how chemotherapy is about poisoning the rapidly dividing cells (Leukemia cells). She also talked about how that poison can kill other cells too, like the good ones. She also talked about A LOT OF STUFF. And I can't remember it all, and I don't think anyone is supposed to.
There are several phases I'll be going through, ranging in length from 3 weeks to something like 180 weeks (I'm not going to be in the hospital that long though!!!). Each phase has cycles, which involve taking specific chemicals on specific days. It's all very neatly planned out (but the Dr. said that they will change it for each case if needed).
There was a very long list of all the known side affects for every single chemical used. They were arranged with rows and columns, a column each for Very Likely, Likely, Not Likely, and Rare (different words were used, though).
So many side affects. Simple ones, complicated ones. And a few of them did have ones that seem really unpleasant listed as "Likely". I don't have the list here right now. I don't really feel like listing them, anyway. But yeah. It is pretty scary.
I had surgery done today, for the first time ever. It was fairly minor, I guess, but the term "surgery" got used, and it felt big. I had an IV port put under my skin, on the right side of my chest. It goes into a fairly large vain (can't remember the name, sorry), and they will use it to get the chemo stuff into my blood. This way I won't be getting poked with IVs forever. It's going to be there for a long time. They say I won't be able to feel it, and that I'll forget it's even there. But it's a pretty strange concept for me, having a piece of something put inside me (I know it happens all the time, and on MUCH bigger and more serious scales, to other people. But this is me, and well... I've never even broken a bone!).
At around 1:30 PM "transport" came (no more nurses playing bumper-beds, this was official!) with another rolling bed, and they took me down to the anesthesia place. Nervous. My wonderful parents came too, and we waited for a while in the pre-anesthesia room. A couple of people came and talked to us a bit about what would happen, and checked my vitals and fun stuff like that. Then, amazingly, Meghan (from the Rochester contra dance) walked in. Turned out she was the anesthesiologist! That made me SO happy. I was really nervous, and it made a huge difference in how I felt just knowing that someone I knew would be there for the whole operation.
So, the surgeon came and talked to us, and answered questions. It was time. I got some injected through my IV, and Meghan said it would make me feel loopy. I felt loopy, as she rolled me through some hallways, and it was pretty fun. And soon I was waking up. I was being rolled back to my lair. Felt very strange.
Not long after I got back, Sarah Kramer and her mom came. I got all happy and bouncy (as bouncy as one can be when they are attached to things AND feeling very strange and not quite un-loopified). It was lovely seeing them. I felt kind of bad that I wasn't my usual self, but I guess there wasn't much I could do.
Something funny happened to my throat and breathing. It felt like my throat was suddenly swollen, and breathing was weird and kind of hard to do. This was all very sudden. I pushed the call-the-nurse-in button, and she arrived. I tried to describe it. It went away fairly quickly, but felt like it could happen again. They had mentioned that I might be nauseous. I didn't think I quite was, but they offered me the medicine they would give if I was (and wanted it). I took a few minutes to process everything, and finally decided to take the pill, since I had a stomach ache anyway, still felt weird, and wanted to be able to actually talk to the Kramers. Felt normal soon.
I can't remember exactly how the rest of the day went...
At one point some of the Pryntz-Nadwornys came: Diana, Brian, Rafi, and Kaniel. Got all happy and bouncy (as bouncy as one... heheh, I'm being repetitive. You know the rest. :P ). I had very awesome time hanging out with all of them. They presented me with a photo album with all sorts of lovely people and crazy-good memories. As well as several notes, which were/are amazing.
Sylvia and Sue brought some necessities over this morning while I was off getting something done to me. These included: A big piece of sky-colored shiny paper to write messages on (on the wall next to my bed), a box of markers, sticky tack (putty for putting paper things on walls), poster tape, a ton of heart-shaped post-it notes, and some more books.
How I feel right now: Weird. Stuff hurts. The places they cut to put in the IV port are really sore (it's hard to move my head around sometimes). But besides those aches and stuff, it's ok. Mentally I feel fine. I feel like I can do this. I was definitely not feeling good all day today. But so far it's been bearable.
Over the last two and a half days (how long I've been here) I've gotten three units (a unit is a pint, so six cups) of blood (other people's blood!) inserted via IV into my system. It made me feel so much better. More energy (sometimes) than I've had for weeks. I've also had several doses of platelets (again, other peoples', I believe). But wow, it's another strange concept I've had to adjust to.
Something I'm really excited about is plastering these walls with anything from anyone who wants to send something. The tan colored paint shall not be visable! People have been asking if there's anything they can do. And I don't really know what to say most of the time, but this is something.
My address is:
Nadine Dyskant-Miller
601 Elmwood Ave.
Rochester, NY 14642
4-1400
Winnifred (in case you missed it in previous posts, he's my IV stand (I knowwww, that's a girl's name. I guess you'll have to deal with it.)) and I have been having some pretty steamy arguments. He doesn't like to walk with me. When we take strolls down the lovely corridors, his wheels stick and he turns in awkward circles, complaining. I've been pretty forceful with him, but I don't think this is how our relationship should be. *Sigh*
Soooo, this turned out to be longer than I expected... I'm really sleepy now, and it's late, so I guess I should go ahead and post this.
My Wristband is Shiny and Green
~*~This was written yesterday at around 7:00 PM~*~
Wellll. The last six-ish hours:
I got my bone marrow biopsy, and I definitely have Leukemia. It's the better of the two kinds they were talking about, and everybody was very happy about that (it's all relative, right?).
So I WILL be here for at least a month. And a few people have asked, so here is my address:
Nadine Dyskant-Miller
601 Elmwood Ave.
Rochester, NY 14642
4-1400
(That last bit is important, it tells them what room I'm in.)
So...
At around 1:30 PM two nurses wheeled me (on the same bed that's in my room, it's really cool) through a bunch of hallways, and several sets of doors. I saw another young-ish patient, the first I've seen, and so far the only. He looked to be about 14. We exchanged amused smiles, as the nurses tried not to run into anything with my bed.
They kind of failed.
Then one of them remembered that I needed to be wearing a mask when I was out of my room (because I have a low amount of white blood cells, which means my immune system is not really working, and I can't be exposed to anything). It was so strange realizing that people couldn't see my smile (and a smile was definitely there, mostly because of the bed randomly bumping into stuff).
We finally arrived at a random (hopefully not to them) room with random equipment, most of which I can't remember. They talked to me a bit about what they were going to do (get a sample of bone marrow and a piece of bone (I think?)). Then they talked to me about the stuff they would use to put me out for a bit (it had a fancy name, which I can't remember). Supposedly it would make me go to sleep in 5 seconds (!!!), and I wouldn't remember anything.
They hooked up a syringe to my spare IV (yup, I've got a spare IV), and started inserting it (cloudy white stuff in the syringe) into my bloodstream. I amusedly informed everyone that I was still awake. Still awake. STILL awake. And then I fell asleep, and I kind of remember falling asleep. Then I woke up, but not entirely, and they wheeled me back to my room. And I felt like there were several hundred pounds of weight over me, and I slept a bit more. And then I woke up, and now I'm up (and it's about 4 hours later), and everything is normal.
I do indeed feel like I "slipped and fell on an ice-skating rink", which is exactly what Lauren, one of the doctors (Oncologist, I think?), told me it would feel like. Not bad, everybody keeps asking if I want to take Tylenol, and I'm like, "NO, it hardly hurts!".
I met Rosie, the music therapist, today. She was very nice (um, everyone here is nice on some scale, mostly very), and we talked about music therapy a lot, since she knew I wanted to possibly be a music therapist. She offered to give me guitar lessons, which made me very happy. She also told me that there is an inter-faith chapel that has good acoustics, and that when there aren't any services going on I can play in there. And there's a piano. Yay!
There are two people named Eric who come in a lot, both of whom are very cool people. And there are just generally a lot of different people popping in and out. It's nice, and it's also amazingly nice to not have anyone in here at all (!!!).
I start chemotherapy on Friday. I'm already trying to decide what color wig to get. From what I hear, there are a lot of possibilities. Suggestions? If I really don't know, I'll go by popular vote, so get your vote out! =P
One of the doctors said that he has seen peoples' hair grow back different from how it was before! Apparently a blonde turned into a brunette. That's crazy, I kind of can't wait to find out what mine looks like.
I still can't believe I'm going to be here for a month. I'm going to stick all sorts of things to the walls for sure, and actually use the closet. I haven't unpacked. Not sure I want to, yet.
And now that you've read all of that (maybe...), I just want to say, you're all such amazing people. I smiled so many times reading your comments on my last note, and hearing your voices on the phone, and seeing you in my room. But especially it's the words. It's hard to imagine NOT getting through ANYTHING, with all of the support you're giving me. And I love you all.
--Note: This is copied from the "note" I posted earlier on Facebook (when I mentioned comments, that is where they are). Most of the people I know are on Facebook, and it's the way that I communicate with them, but I know that plenty of people aren't.
Wellll. The last six-ish hours:
I got my bone marrow biopsy, and I definitely have Leukemia. It's the better of the two kinds they were talking about, and everybody was very happy about that (it's all relative, right?).
So I WILL be here for at least a month. And a few people have asked, so here is my address:
Nadine Dyskant-Miller
601 Elmwood Ave.
Rochester, NY 14642
4-1400
(That last bit is important, it tells them what room I'm in.)
So...
At around 1:30 PM two nurses wheeled me (on the same bed that's in my room, it's really cool) through a bunch of hallways, and several sets of doors. I saw another young-ish patient, the first I've seen, and so far the only. He looked to be about 14. We exchanged amused smiles, as the nurses tried not to run into anything with my bed.
They kind of failed.
Then one of them remembered that I needed to be wearing a mask when I was out of my room (because I have a low amount of white blood cells, which means my immune system is not really working, and I can't be exposed to anything). It was so strange realizing that people couldn't see my smile (and a smile was definitely there, mostly because of the bed randomly bumping into stuff).
We finally arrived at a random (hopefully not to them) room with random equipment, most of which I can't remember. They talked to me a bit about what they were going to do (get a sample of bone marrow and a piece of bone (I think?)). Then they talked to me about the stuff they would use to put me out for a bit (it had a fancy name, which I can't remember). Supposedly it would make me go to sleep in 5 seconds (!!!), and I wouldn't remember anything.
They hooked up a syringe to my spare IV (yup, I've got a spare IV), and started inserting it (cloudy white stuff in the syringe) into my bloodstream. I amusedly informed everyone that I was still awake. Still awake. STILL awake. And then I fell asleep, and I kind of remember falling asleep. Then I woke up, but not entirely, and they wheeled me back to my room. And I felt like there were several hundred pounds of weight over me, and I slept a bit more. And then I woke up, and now I'm up (and it's about 4 hours later), and everything is normal.
I do indeed feel like I "slipped and fell on an ice-skating rink", which is exactly what Lauren, one of the doctors (Oncologist, I think?), told me it would feel like. Not bad, everybody keeps asking if I want to take Tylenol, and I'm like, "NO, it hardly hurts!".
I met Rosie, the music therapist, today. She was very nice (um, everyone here is nice on some scale, mostly very), and we talked about music therapy a lot, since she knew I wanted to possibly be a music therapist. She offered to give me guitar lessons, which made me very happy. She also told me that there is an inter-faith chapel that has good acoustics, and that when there aren't any services going on I can play in there. And there's a piano. Yay!
There are two people named Eric who come in a lot, both of whom are very cool people. And there are just generally a lot of different people popping in and out. It's nice, and it's also amazingly nice to not have anyone in here at all (!!!).
I start chemotherapy on Friday. I'm already trying to decide what color wig to get. From what I hear, there are a lot of possibilities. Suggestions? If I really don't know, I'll go by popular vote, so get your vote out! =P
One of the doctors said that he has seen peoples' hair grow back different from how it was before! Apparently a blonde turned into a brunette. That's crazy, I kind of can't wait to find out what mine looks like.
I still can't believe I'm going to be here for a month. I'm going to stick all sorts of things to the walls for sure, and actually use the closet. I haven't unpacked. Not sure I want to, yet.
And now that you've read all of that (maybe...), I just want to say, you're all such amazing people. I smiled so many times reading your comments on my last note, and hearing your voices on the phone, and seeing you in my room. But especially it's the words. It's hard to imagine NOT getting through ANYTHING, with all of the support you're giving me. And I love you all.
--Note: This is copied from the "note" I posted earlier on Facebook (when I mentioned comments, that is where they are). Most of the people I know are on Facebook, and it's the way that I communicate with them, but I know that plenty of people aren't.
Wednesday, May 27, 2009
Explaining Un-Happy Things
This post is also on my FaceBook profile in a note, just to let everyone know. =) I wrote it at 11:30 AM this morning (Wednesday, May 27th 2009).
OK. So, it's kind of hard figuring out how to get the news out to people. I could use the phone, e-mail, bird, message strapped to an aardvark's back, whatever. But this seemed like an ok way to start.
I'm in the hospital (Strong Hospital in Rochester, NY), and have been since yesterday. I could be here for a month, probably more.
I feel absolutely fine. Seriously. Nothing hurts (though the IVs are a tad bit pokey sometimes. =P ).
There's a reallyreallyreally good chance that I have Leukemia.
And it almost sounds over-dramatic now that I've written it there. Oh well...
I had gotten blood tests last Friday, because we thought I had Anemia.
My energy was practically non-existant, my heart would pump really fast and loud when I went a flight of stairs, and everyone said I looked unusually pale. I was getting random bruises all over me, without any idea where they had come from. My feet were spotty.
The results came back three days later that my platelets (in the blood, have to do with clotting) were only 13 (thousand, I think, it's still confusing), when they should have been 150, and a couple of other things were abnormal. The people at Olean General Hospital (OGH) couldn't figure out why I was still able to walk (I walked roughly 4 miles on Sunday, and did fine). They said I should go to the emergency room.
My mom did some quick researching, and we decided Strong Hospital was right, and we were already in Rochester anyway. So off we went to the ER, and they gave me another blood test to make sure the first was actually right (OGH doesn't have that great a reputation).
An Oncologist came in to talk to us once some of the labs had gone through. And he said that what I had was most likely Leukemia. He said the chance was about 75% that I had it. Later they found Leukemia cells that had been spit into my blood. So now the chance is almost zero that I DON'T have it.
I'm getting a bone marrow biopsy today, and then we'll know for sure.
And yeah. I don't think it has sunk in completely yet.
I don't know how many details you guys want. I might keep a blog/frequent notes, in case people are interested in what goes on (would you be?). Some of this stuff I find really interesting.
I'm SUPER excited to meet the music therapist. I finally realized yesterday that music therapy is something I want to seriously consider for an occupation. One of the nurses here said I can probably learn how (at least partly how, anyway) while I'm here. And that makes me extremely happy, because I don't think I would have pursued it if this hadn't happened.
Random note: They provide a TV with movies, TV (duh), games, and internet. But they don't allow Facebook. Yay laptop!
I changed out of the hospital gown today, and that's made me feel a bit more normal. I still haven't met any of the other teens on this floor, but I really want to. The rec room is right across from me. =D
I get to walk around pulling the IV stand along with me. It is a pole that is taller than I am, with six wheeled legs, and a bag full of the fluids they're pumping into me (salt water and glucose right now, I think). I named him Winnifred. We're deeply connected. In the form of a straw stuck into each of my arms. Charming.
The eraser on the whiteboard (which is telling me who the nurse is today, who is the tech, what number to call for food, and what the date is), looks exactly like a computer mouse. And, seeing as there's internet, I intelligently pulled it down, turned on the screen, and began moving the "mouse" around on the table. The little yellow arrow on the screen was not moving. I examined the bottom of the "mouse", and discovered there was only black felt on it. Ohhhhhhh it's an ERASER! Right. The keyboard has an attached trackball sort of mouse, but believe me, it does NOT look like a mouse. And the buttons are way on the other side of the keyboard. And the whole system is called "getwell:)network".
We called the Rochester dance booking person, there's no way I'm playing the dance tomorrow. And there's no way I'm playing Toronto on Saturday. And basically I have to cancel everything for at least a month. That's a LOT of stuff, as some of you are definitely aware of.
Anyway, there's some things for starters.
<3
OK. So, it's kind of hard figuring out how to get the news out to people. I could use the phone, e-mail, bird, message strapped to an aardvark's back, whatever. But this seemed like an ok way to start.
I'm in the hospital (Strong Hospital in Rochester, NY), and have been since yesterday. I could be here for a month, probably more.
I feel absolutely fine. Seriously. Nothing hurts (though the IVs are a tad bit pokey sometimes. =P ).
There's a reallyreallyreally good chance that I have Leukemia.
And it almost sounds over-dramatic now that I've written it there. Oh well...
I had gotten blood tests last Friday, because we thought I had Anemia.
My energy was practically non-existant, my heart would pump really fast and loud when I went a flight of stairs, and everyone said I looked unusually pale. I was getting random bruises all over me, without any idea where they had come from. My feet were spotty.
The results came back three days later that my platelets (in the blood, have to do with clotting) were only 13 (thousand, I think, it's still confusing), when they should have been 150, and a couple of other things were abnormal. The people at Olean General Hospital (OGH) couldn't figure out why I was still able to walk (I walked roughly 4 miles on Sunday, and did fine). They said I should go to the emergency room.
My mom did some quick researching, and we decided Strong Hospital was right, and we were already in Rochester anyway. So off we went to the ER, and they gave me another blood test to make sure the first was actually right (OGH doesn't have that great a reputation).
An Oncologist came in to talk to us once some of the labs had gone through. And he said that what I had was most likely Leukemia. He said the chance was about 75% that I had it. Later they found Leukemia cells that had been spit into my blood. So now the chance is almost zero that I DON'T have it.
I'm getting a bone marrow biopsy today, and then we'll know for sure.
And yeah. I don't think it has sunk in completely yet.
I don't know how many details you guys want. I might keep a blog/frequent notes, in case people are interested in what goes on (would you be?). Some of this stuff I find really interesting.
I'm SUPER excited to meet the music therapist. I finally realized yesterday that music therapy is something I want to seriously consider for an occupation. One of the nurses here said I can probably learn how (at least partly how, anyway) while I'm here. And that makes me extremely happy, because I don't think I would have pursued it if this hadn't happened.
Random note: They provide a TV with movies, TV (duh), games, and internet. But they don't allow Facebook. Yay laptop!
I changed out of the hospital gown today, and that's made me feel a bit more normal. I still haven't met any of the other teens on this floor, but I really want to. The rec room is right across from me. =D
I get to walk around pulling the IV stand along with me. It is a pole that is taller than I am, with six wheeled legs, and a bag full of the fluids they're pumping into me (salt water and glucose right now, I think). I named him Winnifred. We're deeply connected. In the form of a straw stuck into each of my arms. Charming.
The eraser on the whiteboard (which is telling me who the nurse is today, who is the tech, what number to call for food, and what the date is), looks exactly like a computer mouse. And, seeing as there's internet, I intelligently pulled it down, turned on the screen, and began moving the "mouse" around on the table. The little yellow arrow on the screen was not moving. I examined the bottom of the "mouse", and discovered there was only black felt on it. Ohhhhhhh it's an ERASER! Right. The keyboard has an attached trackball sort of mouse, but believe me, it does NOT look like a mouse. And the buttons are way on the other side of the keyboard. And the whole system is called "getwell:)network".
We called the Rochester dance booking person, there's no way I'm playing the dance tomorrow. And there's no way I'm playing Toronto on Saturday. And basically I have to cancel everything for at least a month. That's a LOT of stuff, as some of you are definitely aware of.
Anyway, there's some things for starters.
<3
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