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.
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