Now that I've posted last night's post, I can write one for today.
I'm using the one computer here, and the keyboard is really loud. I'm hoping that I'm not keeping anyone awake.
Anyway, being out of the hospital has been WONDERFUL.
Today was relaxed, and just nice. We worked on the puzzle for a while, and hung out. Played Settlers of Catan.
Peggy Popp, the weekend home-care nurse, came today. We went over which meds I need to take when, which ones are compatible with each other, and so forth. And she checked my vitals ('cause I missed that real bad), and we talked about how my heart rate has been going up randomly, even when I'm not really doing anything. So far, no worries, though if it gets higher than 120 bpm (which it was at earlier today), I should call.
Then she changed the stuffing in the hole in my chest. It was uncomfortable, but not unbearable. And now it's all fresh and nice.
I've met a few of the other families who are staying here. Haven't really talked to any of them a lot, but they all seem very nice.
There are about 8 little girls running around, though I'm not sure they're all together. It's sweet.
I've gotten used to throwing on my mask everytime I walk into a room with people I don't know.
Today I was sitting on a couch, trying on scarves, and this lady started giving me techniques for pinning them on without ruining the fabric (I hadn't even thought about pinning them, and I'd have been too nervous to anyway). It was really cool.
All five of us (Mom, Dad, Erek, Kate, and I) took a trip to Goodwill. I hardly fit into any of my clothes anymore, because I ended up losing a scary amount of weight during my month in the hospital.
Then, we went to the mexican restaurant again. And again, it was amazing.
At around 9:30 this evening, we decided to take a walk down the bike trail that runs along the Erie Canal, right behind the RMH.
It was SO nice. The air was cool, but not too cold, and it was really nice walking in the dark. We walked quite a ways, at a good pace. My legs were still a little stiff, especially at my ankles. I did some stretches today, though. I still don't think I can run, which is kind of scary.
Anyway, I'm really tired. This whole sleep thing is weird. I can't get to bed before 3 AM, and I can't sleep later than around 6:30. But I'm going to try (I'm too late for getting to bed before 3 this time, but I'm going to try to to do better tomorrow).
Ok, g'night.
Sunday, June 28, 2009
Whoahhh, Out Of the Hospital
**Note: I actually wrote this early yesterday morning (June 27th). Couldn't post it until now.**
Well, I’m out of the hospital!
I’m sitting in the dark, at 2:30 AM, at a table in the kitchen of the Ronald McDonald House (RMH). It’s kind of like a youth hostel, but for people with family members who are in the hospital, and Eric managed to wangle us a room. It’s where my family has been staying over the past month.
It’s a really nice place. There are comfy couches scattered all over the place (I’m not in one right now because I’m having a snack, and food isn’t allowed on the couches), and the kitchen is gorgeous. Our room is sweet, with musical instruments bordering the walls.
Anyway, there’s been a change in plans. Or, I guess Dr. Bruckner never completely decided on how the next week is going to go.
I’m going to go ahead and get chemo-nasties this Tuesday. Which means being re-admitted this Tuesday. Only 3-ish days out of the hospital, then.
I’m going in to get blood drawn in clinic on Monday. Then, on Tuesday I will get a bone marrow biopsy, something injected into my spinal fluid, and a “Pick Line” (not sure that’s how they spell it, I’ve never seen it written) inserted.
The “Pick Line” is, to my understanding, like a super IV. It goes into a vein in my arm and threads all the way up to near my shoulder. Weird! Normally they put it in while the person is awake (I hear it’s not that bad), but since they’re giving me sleeping potion for the biopsy anyway, they’re going to do it then. The line can last over 6 weeks, which is awesome, and they’ll be able to use it for the chemo. But apparently I might be able to feel it in my arm, unlike an IV. Well, I guess it sort of is going to be all the way in my vein.
We still haven’t resolved this port business. And we have time to decide, since nothing is going to be put in this week anyway. Gahhh, it would have been so nice just to have been able to keep my old port in. I LIKED it, it was working, and it was nice to me.
My cytogenetic (sp?) results (not sure that’s the right terminology) finally came back (it’s been about a month). I hadn’t mentioned it, I didn’t know much about it. Anyway, they came out good. My parents were INSANELY relieved. I didn’t realize it was that serious.
Moving out was an operation, but really not that bad. Erek and I packed up a lot Thursday night. It took a long time to get out today though, because of all the stuff that had to happen.
My nurse, Emily (who is very very awesome), wanted to make sure that my stuffing was ok, and we thought it was a good idea to have Beth, the wound care lady who came to change my dressing on Thursday, come and look at it again. So she came, and I was sure she would want to change the stuffing before I left. But she said it looked fine, and I was very happy about that.
Then Emily went over a sheet with an overview of my stay, diagnosis, everything that had happened (there was a decent list of scary stuff that had happened, and I have it, and I might type it up. I find it really interesting) with us.
We also went over all of the medicine that I will have to take while I’m an out-patient. Looong list. Later, I made a chart for myself to make sure I keep track of what pills I’ve already taken throughout the day. Uncharacteristically organized of me. :P Also, we’re going to get a pill box.
There was a doctor party, which doesn’t happen quite as often anymore (usually it’s just two or three of them who come in and talk to us in the morning). We asked some questions, got them answered, and I talked to Dr. Norman a little bit, which was nice. She’s really sweet.
Finally, I was really anxious to leave.
We had lunch there. It took us until about 3:30 to get out.
I went to the nurse’s station and said some more goodbyes, though I’m going back in 3-ish days, so it wasn’t really goodbye.
Once we left my unit, we had to go down to the pharmacy to pick up my Prednisone, which they had forgotten to order with my other meds.
I hadn’t ridden in a car for over a month. It was strange strange strange. But not too unfamiliar. We opened all the windows, and the wind blew on my bare head. It was wonderful.
Freeeeeeee!!!!!!!!!!!!
We drove straight to the RMH. Mom and Erek gave me a tour.
We went outside, and started to walk to the Mexican restaurant, which I had been wanting to go to for about 3 weeks. Then I realized that I needed to get together my meds, and figure out what needed to be taken when. I had a few questions about today’s doses, because a few had been missed while we were packing up. It took a while to get through to a doctor and figure it all out. But finally we made it to the restaurant.
It was SO GOOD. The owner was really nice, and mom chatted with him in Spanish for a while. We instantly loved it there. And there weren’t really any other people there, so I didn’t have to worry about wearing a mask (which would have been tricky to eat with).
When we got back to the RMH, Dad and Sue were both there. It was awesome seeing them.
This evening was sweet and relaxed. After a while Mom took a nap, and Dad, Erek, and I started a 1000 piece puzzle. But we soon discovered that there was part of ANOTHER puzzle mixed in (the pieces were significantly different, both in style and texture, so it wasn’t hard to separate them). Haha, we started to do both, and then realized that one of them was incredibly incomplete.
Later we discovered more pieces from a different puzzle altogether.
We decided to go rent a movie, before picking up Kate from the airport (her plane was coming in at around 10:30).
So we all piled into the Cabriolet (dad found this old black convertible somewhere a while ago, and it’s really awesome), and drove through the warm evening with the top down.
Picked up Kate (yay!!!), and drove home. We watched The Royal Tenenbaums.
And then we went to bed, and I couldn’t sleep, so I came out here with the laptop.
There is no wireless here, so I’m typing this offline. I’ll try to find a way to post it tomorrow.
Well, I’m out of the hospital!
I’m sitting in the dark, at 2:30 AM, at a table in the kitchen of the Ronald McDonald House (RMH). It’s kind of like a youth hostel, but for people with family members who are in the hospital, and Eric managed to wangle us a room. It’s where my family has been staying over the past month.
It’s a really nice place. There are comfy couches scattered all over the place (I’m not in one right now because I’m having a snack, and food isn’t allowed on the couches), and the kitchen is gorgeous. Our room is sweet, with musical instruments bordering the walls.
Anyway, there’s been a change in plans. Or, I guess Dr. Bruckner never completely decided on how the next week is going to go.
I’m going to go ahead and get chemo-nasties this Tuesday. Which means being re-admitted this Tuesday. Only 3-ish days out of the hospital, then.
I’m going in to get blood drawn in clinic on Monday. Then, on Tuesday I will get a bone marrow biopsy, something injected into my spinal fluid, and a “Pick Line” (not sure that’s how they spell it, I’ve never seen it written) inserted.
The “Pick Line” is, to my understanding, like a super IV. It goes into a vein in my arm and threads all the way up to near my shoulder. Weird! Normally they put it in while the person is awake (I hear it’s not that bad), but since they’re giving me sleeping potion for the biopsy anyway, they’re going to do it then. The line can last over 6 weeks, which is awesome, and they’ll be able to use it for the chemo. But apparently I might be able to feel it in my arm, unlike an IV. Well, I guess it sort of is going to be all the way in my vein.
We still haven’t resolved this port business. And we have time to decide, since nothing is going to be put in this week anyway. Gahhh, it would have been so nice just to have been able to keep my old port in. I LIKED it, it was working, and it was nice to me.
My cytogenetic (sp?) results (not sure that’s the right terminology) finally came back (it’s been about a month). I hadn’t mentioned it, I didn’t know much about it. Anyway, they came out good. My parents were INSANELY relieved. I didn’t realize it was that serious.
Moving out was an operation, but really not that bad. Erek and I packed up a lot Thursday night. It took a long time to get out today though, because of all the stuff that had to happen.
My nurse, Emily (who is very very awesome), wanted to make sure that my stuffing was ok, and we thought it was a good idea to have Beth, the wound care lady who came to change my dressing on Thursday, come and look at it again. So she came, and I was sure she would want to change the stuffing before I left. But she said it looked fine, and I was very happy about that.
Then Emily went over a sheet with an overview of my stay, diagnosis, everything that had happened (there was a decent list of scary stuff that had happened, and I have it, and I might type it up. I find it really interesting) with us.
We also went over all of the medicine that I will have to take while I’m an out-patient. Looong list. Later, I made a chart for myself to make sure I keep track of what pills I’ve already taken throughout the day. Uncharacteristically organized of me. :P Also, we’re going to get a pill box.
There was a doctor party, which doesn’t happen quite as often anymore (usually it’s just two or three of them who come in and talk to us in the morning). We asked some questions, got them answered, and I talked to Dr. Norman a little bit, which was nice. She’s really sweet.
Finally, I was really anxious to leave.
We had lunch there. It took us until about 3:30 to get out.
I went to the nurse’s station and said some more goodbyes, though I’m going back in 3-ish days, so it wasn’t really goodbye.
Once we left my unit, we had to go down to the pharmacy to pick up my Prednisone, which they had forgotten to order with my other meds.
I hadn’t ridden in a car for over a month. It was strange strange strange. But not too unfamiliar. We opened all the windows, and the wind blew on my bare head. It was wonderful.
Freeeeeeee!!!!!!!!!!!!
We drove straight to the RMH. Mom and Erek gave me a tour.
We went outside, and started to walk to the Mexican restaurant, which I had been wanting to go to for about 3 weeks. Then I realized that I needed to get together my meds, and figure out what needed to be taken when. I had a few questions about today’s doses, because a few had been missed while we were packing up. It took a while to get through to a doctor and figure it all out. But finally we made it to the restaurant.
It was SO GOOD. The owner was really nice, and mom chatted with him in Spanish for a while. We instantly loved it there. And there weren’t really any other people there, so I didn’t have to worry about wearing a mask (which would have been tricky to eat with).
When we got back to the RMH, Dad and Sue were both there. It was awesome seeing them.
This evening was sweet and relaxed. After a while Mom took a nap, and Dad, Erek, and I started a 1000 piece puzzle. But we soon discovered that there was part of ANOTHER puzzle mixed in (the pieces were significantly different, both in style and texture, so it wasn’t hard to separate them). Haha, we started to do both, and then realized that one of them was incredibly incomplete.
Later we discovered more pieces from a different puzzle altogether.
We decided to go rent a movie, before picking up Kate from the airport (her plane was coming in at around 10:30).
So we all piled into the Cabriolet (dad found this old black convertible somewhere a while ago, and it’s really awesome), and drove through the warm evening with the top down.
Picked up Kate (yay!!!), and drove home. We watched The Royal Tenenbaums.
And then we went to bed, and I couldn’t sleep, so I came out here with the laptop.
There is no wireless here, so I’m typing this offline. I’ll try to find a way to post it tomorrow.
Friday, June 26, 2009
Last Night Here?!
Well. This is my last night in the hospital. That's a really scary thought. Today was around my 30th day here.
I took down all of the posters and cards from the walls this evening, since I'm leaving in the morning. It was definitely sad. I've been living here for the last month, and I didn't really mind it all that much. I tried to make it my own space, and in doing so, I became a little attached to it.
Not that I MIND getting out, it's just... strange.
Yesterday morning I got my port taken out. They rolled me, on my bed, over to the PICU, which is where they do stuff like bone marrow biopsies and spinal taps. And also remove ports. The surgeon who put it in was the one who removed it. They gave me the same white sedative that they used for the spinal taps. But first they gave me a little bit of clear stuff, and it made me feel really strange. For about 5 minutes, while they got stuff ready, I sat there feeling kind of loopy, almost like I was floating. Then they gave me the white stuff.
I woke up portless, with two IVs in my left arm. I had a huge wad of fluffy gauze stuck to my chest, with a clear bandage over it.
I was free of Winnifred after while, so Erek and I went and explored some more of the hospital. We were trying to find the tunnel again, so that I could show it to him, and also so we could take pictures. But we never found it.
We power walked through the halls, and outside.
It's weird, I'm having a really hard time remembering what else I did yesterday.
Rosie, the music therapist, came in the afternoon, and we did some really cool relaxation stuff.
Later, Tom and Hope came and played fiddle and guitar in my room. It was one of the most wonderful things that has happened while I've been here. I felt so alive as they played.
The decision making process for what to do about this port business has been very interesting. I'm going to try to get it as accurate as I can, but I can't promise. There was a LOT of information given.
Dr. Salloum, the surgeon, was very set on the idea of putting a Broviak in next week.
But yesterday we talked with Dr. Mullen, the oncologist who diagnosed me in the first place, and he had another option. He thought that we could use regular IVs for the next week, waiting until a good time to put in another port on the other side.
Today we had a conference with Dr. Bruckner, my main oncologist. She hadn't talked face-to-face with Dr. Salloum yet, and so she couldn't understand why he was so against putting in another port. Apparently, he REALLY didn't want to, he thought that it wouldn't work again. She said she'd try to talk to him today. She wants to go ahead and use IVs next week, postpone chemo for a week so the port-removal site can heal, and so the new port can sit and heal for a week before use.
So I'm actually planning on being out of the hospital for 10-ish days, instead of 3, before I come in for the 5 day intensive chemo.
Then we all asked a lot of questions of Dr. Bruckner, mostly about being an out-patient. I asked about what kind of places I should stay away from (sickness, basically. I have to try not to get the flu. I probably will have to wear a mask when I'm around lots of people). And if I could get a henna tattoo on my head (Kate is coming this weekend, and she's bringing henna!). Answer is yes!
Today, the hole where my port was was re-stuffed. A wound care lady came, and put this felt stuff with silver (silver!) in it into the hole. I won't give details, lets just say it was, and is, very strange looking. Not pleasant at all. I think it will only have to be re-stuffed a few times a week. Ugh, though.
The Zendarskis came to visit, and so did the Waymans. I gave a little tour of this floor, and we all hung out on the playdeck for a bit, playing air hockey and sitting outside. 'Twas fun.
I've been hugging and saying goodbye to all of the nurses I've had since I've been here. I love them so much! Every single one is so sweet, and I'm going to miss them. But I'll be back, and I can visit anyway, when I come in for clinic.
I stocked up on Mickey Mouse masks, when Cheryl came in to say goodbye. She suggested using them as slingshots. :D
Anyway, Erek is staying here. We packed up most of my room this evening, and now we're watching movies and eating soup. Why sleep during my last night in the hospital? :P
I took down all of the posters and cards from the walls this evening, since I'm leaving in the morning. It was definitely sad. I've been living here for the last month, and I didn't really mind it all that much. I tried to make it my own space, and in doing so, I became a little attached to it.
Not that I MIND getting out, it's just... strange.
Yesterday morning I got my port taken out. They rolled me, on my bed, over to the PICU, which is where they do stuff like bone marrow biopsies and spinal taps. And also remove ports. The surgeon who put it in was the one who removed it. They gave me the same white sedative that they used for the spinal taps. But first they gave me a little bit of clear stuff, and it made me feel really strange. For about 5 minutes, while they got stuff ready, I sat there feeling kind of loopy, almost like I was floating. Then they gave me the white stuff.
I woke up portless, with two IVs in my left arm. I had a huge wad of fluffy gauze stuck to my chest, with a clear bandage over it.
I was free of Winnifred after while, so Erek and I went and explored some more of the hospital. We were trying to find the tunnel again, so that I could show it to him, and also so we could take pictures. But we never found it.
We power walked through the halls, and outside.
It's weird, I'm having a really hard time remembering what else I did yesterday.
Rosie, the music therapist, came in the afternoon, and we did some really cool relaxation stuff.
Later, Tom and Hope came and played fiddle and guitar in my room. It was one of the most wonderful things that has happened while I've been here. I felt so alive as they played.
The decision making process for what to do about this port business has been very interesting. I'm going to try to get it as accurate as I can, but I can't promise. There was a LOT of information given.
Dr. Salloum, the surgeon, was very set on the idea of putting a Broviak in next week.
But yesterday we talked with Dr. Mullen, the oncologist who diagnosed me in the first place, and he had another option. He thought that we could use regular IVs for the next week, waiting until a good time to put in another port on the other side.
Today we had a conference with Dr. Bruckner, my main oncologist. She hadn't talked face-to-face with Dr. Salloum yet, and so she couldn't understand why he was so against putting in another port. Apparently, he REALLY didn't want to, he thought that it wouldn't work again. She said she'd try to talk to him today. She wants to go ahead and use IVs next week, postpone chemo for a week so the port-removal site can heal, and so the new port can sit and heal for a week before use.
So I'm actually planning on being out of the hospital for 10-ish days, instead of 3, before I come in for the 5 day intensive chemo.
Then we all asked a lot of questions of Dr. Bruckner, mostly about being an out-patient. I asked about what kind of places I should stay away from (sickness, basically. I have to try not to get the flu. I probably will have to wear a mask when I'm around lots of people). And if I could get a henna tattoo on my head (Kate is coming this weekend, and she's bringing henna!). Answer is yes!
Today, the hole where my port was was re-stuffed. A wound care lady came, and put this felt stuff with silver (silver!) in it into the hole. I won't give details, lets just say it was, and is, very strange looking. Not pleasant at all. I think it will only have to be re-stuffed a few times a week. Ugh, though.
The Zendarskis came to visit, and so did the Waymans. I gave a little tour of this floor, and we all hung out on the playdeck for a bit, playing air hockey and sitting outside. 'Twas fun.
I've been hugging and saying goodbye to all of the nurses I've had since I've been here. I love them so much! Every single one is so sweet, and I'm going to miss them. But I'll be back, and I can visit anyway, when I come in for clinic.
I stocked up on Mickey Mouse masks, when Cheryl came in to say goodbye. She suggested using them as slingshots. :D
Anyway, Erek is staying here. We packed up most of my room this evening, and now we're watching movies and eating soup. Why sleep during my last night in the hospital? :P
Thursday, June 25, 2009
Where to Send Mail
So, it looks like I'm getting out of the hospital tomorrow (but coming back for 5 days next week). I'm not actually going home though. I live two hours from here, and that's just not going to work. I've been living in Rochester part-time for the last few semesters, since my class load got a lot heavier, so it's not like I'm not used to being here.
I'll be staying in Rochester for most of this summer.
Some people have asked me about where to send mail, now that I'm going to be out of the hospital.
So here's the address I'll be staying at for the month of July:
293 Brooksboro Dr.
Webster, NY 14580
I'm not much of a morning writer, so I'll try to give an update later. :)
I'll be staying in Rochester for most of this summer.
Some people have asked me about where to send mail, now that I'm going to be out of the hospital.
So here's the address I'll be staying at for the month of July:
293 Brooksboro Dr.
Webster, NY 14580
I'm not much of a morning writer, so I'll try to give an update later. :)
Wednesday, June 24, 2009
Possible Second "Bump"
Whoah, so today there was news. Not so great news, actually pretty scary news.
My port, the thing they put in surgically when I first got here, has to be taken out tomorrow morning. Because the incisions never healed. It's been a month, and they never healed.
I was due to be re-accessed today. Which is a weekly thing. They take out the needles that go into the port and replace them.
So I was de-accessed for two whole hours, which was wonderful, and I'll write about that later.
When they went to put in the new needles (with the little black butterflies), they (the nurse and doctor who came to re-access it) got worried about the oozing that was still coming out of the cuts. And they thought they saw a hint of infection. They sent for blood cultures, and more people for more opinions. Called in the surgeon who put the port in. He didn't like the look of it, said he hardly ever saw the incisions go that long without healing. They talked about it for a while.
Came up with this plan: Tomorrow morning, take it out. The whole port. Use an IV to continue my meds. Still send me home on Friday, with a stuffed hole in place of the port (the idea of that kind of blew my mind).
On Tuesday, I'm going to get a Broviak put in, which is the other option for giving chemo. It's easier for it to get infected, because it's always open, which is why I got the port, but at this point it's less likely to get infected than my un-healed port. So, more surgery.
I'm really sad that I'm not going to be able to use the port. At first, I was nervous about it, because unlike the Broviak, every time I come in for out-patient treatment, I have to get poked. But today, when they re-accessed it, I realized that I don't mind it that much at all. And I was getting used to the idea. The nice thing about the port is that when I'm home it's completely healed over, and everything feels normal. The Broviak, on the other hand, always sticks out. No pokes, but stuff hanging out.
Now I'll talk about how awesome I've been feeling. I've had energy, I've been completely awake, I've been out and about, I've been DOING things, I've been happy, I've been just plain great.
Yesterday was beautiful.
Rafi and Sylvia came over, and mom accompanied us down to the "Specialty Shop", where I got to try on wigs.
As soon as I walked in there, I realized that I probably would NOT be walking out with anything to seriously plan on wearing to cover my head. They were so... styled. Nothing felt like ME. But it was an absolute blast trying them on. I tried on red ones, black ones, grey ones, strange styles, all sorts of stuff. We took pictures and laughed a lot. Then I got into the bin of free ones. They were not in perfect shape, and all of them were definitely meant for someone a LOT older than me. Those were the most fun to try on. And I left with five of them. Two salt-and-pepper ones, a short, grey, curly one, and two short, curly, red ones. The lady there assured me that she had plenty, and no one was taking them, and that I shouldn't feel bad for taking five. They're just so much FUN!
After that we had a tie-dye party in the rec room. Rachel, one of the awesome "Child Life" people, was organizing it. Basically, we cut up sheets into bandanna sized squares, and tie-dyed them. And some people dyed socks. Anyway, it was fun. Buckets with colorful water and soggy masses of fabric sat in my bathtub for the next few hours.
Meanwhile, Paige (another Leukemia patient), Sean (another patient), and Jessi (another awesome Child Life person) were going for a walk, and invited Sylvia and I to tag along. Paige and Sean were somewhere around my age, maybe a bit older.
We went down to the lobby and out one of the doors. Past the bus stop, down to the sidewalk. I had no idea we could just walk down the sidewalk. We walked almost half way around the hospital (at one point Sylvia had to go back to catch her bus). It was interesting, maneuvering Winnifred over all the cracks and curb cuts. We turned into a random driveway of the hospital, and wandered in through some random door. Jessi seemed to really know her way around. I was completely disoriented. This place is huge. She led us to this cute little courtyard, with brick paths and lots of squirrels, birds, and benches. It was fun getting Winnifred to roll over the bricks. We sat there for a while, talked a bit, and then headed back. Lots of strange hallways later, we got back to 4-1400.
Kind of drained of energy, I sprawled on my bed for a while. Then I got up and started rinsing out the tie-dyes. They came out awesome. I love tie dye for that. It looks so muddy and messy until you take off the rubber bands and un-twist/un-fold the fabric.
That evening, around 6 fiddlers from the Kanack School of Music and RPYO showed up, as well as a few other visitors, and we had a jam session. It was sweet, getting to play with people. I had hardly played flute at all, and then suddenly we were playing for at least an hour and a half. It was great.
Sooo tired out after that day. I thought I would crash, and sleep well that night. It sure felt like I was about to. But after everyone, including mom, left, I was pretty awake. I tried to sleep, failed, had a snack (Kefir and a bagel), and took out a notebook and all the writing utensils in my drawer (a LOT). I had discovered earlier that day that I had sort of lost my handwriting. It was really scary. My hand was shaky, the pen felt slightly uncontrolled, and my letters were really sloppy. I realized that I had hardly written anything for a few weeks. I felt really bad that I'd let that happen. Hand writing things has always been a huge part of me. I love to write letters, and I journaled regularly. I always loved the feel of the ink going onto the paper.
So I started to practice writing (!). I rambled on paper for a long time, and tried different angles. Even now, it's still shaky. So yeah, I'm going to work on that. :)
Cheryl, that night's nurse, came in at one point, and I was sitting cross-legged on my bed, bent over paper, writing. I was really enjoying myself, reuniting with the pen. I paused.
She was fiddling with Winnifred's buttons, and then said something like: "Well, y'know, I think Winnifred needs an attitude adjustment." Apparently he wasn't letting her do some sort of programming option. So an attitude adjustment is what he got. She turned him off, and then turned him back on, and he grudgingly agreed with her.
Anyway, we had some good laughs about that one. She stayed for a while, and we talked about all sorts of things. We decided that I should take some of the Mickey Mouse masks home, some for me to keep as mementos, others, we joked, for me to give as birthday presents.
We talked about favorite words, after she noticed the poster that TuneScape and the Shinglehouse Festival sent me, with all those strange and cool words written on it (strange and cool words are one of my things).
She told me about how much she loves Biology, and the classes she had taken in college, and we got me all excited all over again for the Bio class I'm taking in the fall.
We laughed a lot over random things. I felt so happy and light, and not tired.
At around 2 AM I went out for another snack, and then I finally got some sleep.
Up at around 6:30 this morning. Just in time to order breakfast, which was top priority.
It was sooo good, I was so hungry, and I felt wonderful afterwards.
And I had a plan. The nurses had told me there would be a gap between 10 AM and Noon today, where I wouldn't be given any antibiotics through my port. And I was due to be re-accessed. Which means being de-accessed first. Which means freedom for two hours. Which means a shower free of biohazard bags and tape and worries, and all that stuff. And then I had all that time before I had to be re-accessed. So I thought it'd be really fun to go exploring around the hospital, both inside and out (though mostly out, because it was such a nice day), without Winnifred. I'd gotten a taste of it yesterday.
So, at 9:45 I got clean clothes and towels ready, Emily (my nurse) came, and I was de-accessed. It took a while to get the site cleaned up and find out if I could get the stitched up part wet, and all that. Finally it was decided that I didn't need any of the dressing on at all. So I really had a free shower.
Rafi and Sylvia showed up while I was in the shower. I had to make sure that my head was covered, and that I had a shawl or something to cover my shoulders, because the Vincristine really increases sun sensitivity, and the nurses wanted to make sure I didn't get sun burned.
So I put on the fuzzy pink hat that Victor brought me, and grabbed a huge, beautiful scarf that Pamela sent me, and signed out.
It was a blast, leaving the hospital with just my friends, and exploring. I felt like I was playing dress up, wearing the pink hat, and having the scarf tied around my shoulders like a cape. It was fun.
We walked down the same sidewalk as the day before, and turned into the same driveway, but this time we tried to figure out how to get into the playground that was locked. There were people in there, so we thought we could find a way from inside somewhere. We wandered for a while. Found the same courtyard that I'd sat in the day before. Didn't stay long. We went back in through a random door, and ran into Eric, the amazing social worker who has been by my family's side through this whole thing. He does things like: being awesome, arranging for the room that my family has at the Ronald McDonald House, knowing lots of things, being awesome, did I mention being awesome? Anyway, we told him we were looking for adventure, and he showed us to an inconspicuous little door that led to a flight of stairs going down. He told us to take that tunnel, and we'd get to the nursing school.
The tunnel was amazing. It was entirely painted grey, and had a low ceiling, and all sorts of pipes running along the walls. The hallway was slanted slightly down.
There was this random painting on one of the walls. It was very colorful, and had lots of celtic knots and a sort of celtic knot bird. Completely out of context. Made me very happy. We tried to take a picture, but Rafi's phone died, and I had (foolishly) left my camera in my room.
We ventured down the tunnel. It was very warm down there, and wonderfully eerie. At the other end, there was a staircase leading up.
At the top, the door opened into this fancily carpeted entry-way. The nursing school. There was a big, high-ceilinged room with an oriental rug and a baby grand piano. Several students were eating lunch and studying. We went out the doors and into another courtyard. Saw a balcony somewhere over the building we had just exited. We went back inside, and tried to find a way to it. Going up the little carpeted stairs, I tried to take them two at a time. And collapsed. It was really strange. I didn't trip, I just sort of ended up on the floor. A little disturbing. I wasn't tired or anything, I guess my muscles just gave out. Sylvia had to help me up. I really don't like the idea of that sort of weakness. I felt completely fine.
We took the elevator to the top floor. Found another staircase, took those. But they dead-ended at a locked door. No balcony there. We wandered the carpeted halls, past open office doors. A couple of people asked if we needed help finding something.
We tried several different staircases, never found the balcony. I had no problem with the stairs! Heh, a big improvement from before I even got into the hospital (that's one of the reasons I got a blood test in the first place).
I needed to be back in fifteen minutes, so we started to make our way back. We exited the nursing school, crossed the street (we'd crossed under it through the tunnel), and ambled back to the hospital. Going up a grassy hill, I felt that weakness in my legs again. Was very careful not to fall.
That outing just made my day. We took the stairs back to the 4th floor, and I was hardly tired.
Then came the re-accessing, which was when I got the bad news that I started this post with.
Since I've already written about that, I'll skip over it.
Sylvia and Rafi were in the rec room, because of all the doctors, nurses, and the surgeon in my room. When I was free, I went out to join them. We did a puzzle on the air-hockey table, and listened to music from the jukebox (which has a lot of stuff on it, it's really cool). I was a bit shaken, but felt happy to still be with friends, and doing a puzzle. Which I get addicted to doing really fast. Sylvia had to go. Rafi and I finished that puzzle, and started another one. Nearly finished it, and then he had to go too.
I went back to my room, and kind of crashed. I had dinner, which was good, and then, at around 7, I fell asleep. And it was the deepest sleep I've had for a long time. It was really strange, and kind of cool. I dreamt that I was given anesthesia. And so I felt like I was given anesthesia. And I wonder if that is why it felt like such a deep sleep. Haha, I don't know.
Anyway, I had some other dreams, strange ones. Which I've been having lately. Can't remember them very well.
Woke up at around 10. Mom had gone home, and everything was quiet. I actually tried to go back to sleep, but couldn't. So I had a snack (because that's what I do), and did stuff (can't remember what, not much). At around 11 I decided to watch a movie. So I went to the fridge to get the last food I'd be able to eat until tomorrow (because they're giving me some sort of anesthesia, I can't eat anything past midnight). I watched "Hitch" on the hospital TV. Part way through, I realized it was midnight, and quickly ate my soup.
And now here I am. I think this is the first time I've written right up to the moment.
Cheryl has come in a couple of times while I've been writing this. We had some more random conversations. I really like talking to her.
Well, in around 6 hours I'll be deportified. Yikes.
G'night.
My port, the thing they put in surgically when I first got here, has to be taken out tomorrow morning. Because the incisions never healed. It's been a month, and they never healed.
I was due to be re-accessed today. Which is a weekly thing. They take out the needles that go into the port and replace them.
So I was de-accessed for two whole hours, which was wonderful, and I'll write about that later.
When they went to put in the new needles (with the little black butterflies), they (the nurse and doctor who came to re-access it) got worried about the oozing that was still coming out of the cuts. And they thought they saw a hint of infection. They sent for blood cultures, and more people for more opinions. Called in the surgeon who put the port in. He didn't like the look of it, said he hardly ever saw the incisions go that long without healing. They talked about it for a while.
Came up with this plan: Tomorrow morning, take it out. The whole port. Use an IV to continue my meds. Still send me home on Friday, with a stuffed hole in place of the port (the idea of that kind of blew my mind).
On Tuesday, I'm going to get a Broviak put in, which is the other option for giving chemo. It's easier for it to get infected, because it's always open, which is why I got the port, but at this point it's less likely to get infected than my un-healed port. So, more surgery.
I'm really sad that I'm not going to be able to use the port. At first, I was nervous about it, because unlike the Broviak, every time I come in for out-patient treatment, I have to get poked. But today, when they re-accessed it, I realized that I don't mind it that much at all. And I was getting used to the idea. The nice thing about the port is that when I'm home it's completely healed over, and everything feels normal. The Broviak, on the other hand, always sticks out. No pokes, but stuff hanging out.
Now I'll talk about how awesome I've been feeling. I've had energy, I've been completely awake, I've been out and about, I've been DOING things, I've been happy, I've been just plain great.
Yesterday was beautiful.
Rafi and Sylvia came over, and mom accompanied us down to the "Specialty Shop", where I got to try on wigs.
As soon as I walked in there, I realized that I probably would NOT be walking out with anything to seriously plan on wearing to cover my head. They were so... styled. Nothing felt like ME. But it was an absolute blast trying them on. I tried on red ones, black ones, grey ones, strange styles, all sorts of stuff. We took pictures and laughed a lot. Then I got into the bin of free ones. They were not in perfect shape, and all of them were definitely meant for someone a LOT older than me. Those were the most fun to try on. And I left with five of them. Two salt-and-pepper ones, a short, grey, curly one, and two short, curly, red ones. The lady there assured me that she had plenty, and no one was taking them, and that I shouldn't feel bad for taking five. They're just so much FUN!
After that we had a tie-dye party in the rec room. Rachel, one of the awesome "Child Life" people, was organizing it. Basically, we cut up sheets into bandanna sized squares, and tie-dyed them. And some people dyed socks. Anyway, it was fun. Buckets with colorful water and soggy masses of fabric sat in my bathtub for the next few hours.
Meanwhile, Paige (another Leukemia patient), Sean (another patient), and Jessi (another awesome Child Life person) were going for a walk, and invited Sylvia and I to tag along. Paige and Sean were somewhere around my age, maybe a bit older.
We went down to the lobby and out one of the doors. Past the bus stop, down to the sidewalk. I had no idea we could just walk down the sidewalk. We walked almost half way around the hospital (at one point Sylvia had to go back to catch her bus). It was interesting, maneuvering Winnifred over all the cracks and curb cuts. We turned into a random driveway of the hospital, and wandered in through some random door. Jessi seemed to really know her way around. I was completely disoriented. This place is huge. She led us to this cute little courtyard, with brick paths and lots of squirrels, birds, and benches. It was fun getting Winnifred to roll over the bricks. We sat there for a while, talked a bit, and then headed back. Lots of strange hallways later, we got back to 4-1400.
Kind of drained of energy, I sprawled on my bed for a while. Then I got up and started rinsing out the tie-dyes. They came out awesome. I love tie dye for that. It looks so muddy and messy until you take off the rubber bands and un-twist/un-fold the fabric.
That evening, around 6 fiddlers from the Kanack School of Music and RPYO showed up, as well as a few other visitors, and we had a jam session. It was sweet, getting to play with people. I had hardly played flute at all, and then suddenly we were playing for at least an hour and a half. It was great.
Sooo tired out after that day. I thought I would crash, and sleep well that night. It sure felt like I was about to. But after everyone, including mom, left, I was pretty awake. I tried to sleep, failed, had a snack (Kefir and a bagel), and took out a notebook and all the writing utensils in my drawer (a LOT). I had discovered earlier that day that I had sort of lost my handwriting. It was really scary. My hand was shaky, the pen felt slightly uncontrolled, and my letters were really sloppy. I realized that I had hardly written anything for a few weeks. I felt really bad that I'd let that happen. Hand writing things has always been a huge part of me. I love to write letters, and I journaled regularly. I always loved the feel of the ink going onto the paper.
So I started to practice writing (!). I rambled on paper for a long time, and tried different angles. Even now, it's still shaky. So yeah, I'm going to work on that. :)
Cheryl, that night's nurse, came in at one point, and I was sitting cross-legged on my bed, bent over paper, writing. I was really enjoying myself, reuniting with the pen. I paused.
She was fiddling with Winnifred's buttons, and then said something like: "Well, y'know, I think Winnifred needs an attitude adjustment." Apparently he wasn't letting her do some sort of programming option. So an attitude adjustment is what he got. She turned him off, and then turned him back on, and he grudgingly agreed with her.
Anyway, we had some good laughs about that one. She stayed for a while, and we talked about all sorts of things. We decided that I should take some of the Mickey Mouse masks home, some for me to keep as mementos, others, we joked, for me to give as birthday presents.
We talked about favorite words, after she noticed the poster that TuneScape and the Shinglehouse Festival sent me, with all those strange and cool words written on it (strange and cool words are one of my things).
She told me about how much she loves Biology, and the classes she had taken in college, and we got me all excited all over again for the Bio class I'm taking in the fall.
We laughed a lot over random things. I felt so happy and light, and not tired.
At around 2 AM I went out for another snack, and then I finally got some sleep.
Up at around 6:30 this morning. Just in time to order breakfast, which was top priority.
It was sooo good, I was so hungry, and I felt wonderful afterwards.
And I had a plan. The nurses had told me there would be a gap between 10 AM and Noon today, where I wouldn't be given any antibiotics through my port. And I was due to be re-accessed. Which means being de-accessed first. Which means freedom for two hours. Which means a shower free of biohazard bags and tape and worries, and all that stuff. And then I had all that time before I had to be re-accessed. So I thought it'd be really fun to go exploring around the hospital, both inside and out (though mostly out, because it was such a nice day), without Winnifred. I'd gotten a taste of it yesterday.
So, at 9:45 I got clean clothes and towels ready, Emily (my nurse) came, and I was de-accessed. It took a while to get the site cleaned up and find out if I could get the stitched up part wet, and all that. Finally it was decided that I didn't need any of the dressing on at all. So I really had a free shower.
Rafi and Sylvia showed up while I was in the shower. I had to make sure that my head was covered, and that I had a shawl or something to cover my shoulders, because the Vincristine really increases sun sensitivity, and the nurses wanted to make sure I didn't get sun burned.
So I put on the fuzzy pink hat that Victor brought me, and grabbed a huge, beautiful scarf that Pamela sent me, and signed out.
It was a blast, leaving the hospital with just my friends, and exploring. I felt like I was playing dress up, wearing the pink hat, and having the scarf tied around my shoulders like a cape. It was fun.
We walked down the same sidewalk as the day before, and turned into the same driveway, but this time we tried to figure out how to get into the playground that was locked. There were people in there, so we thought we could find a way from inside somewhere. We wandered for a while. Found the same courtyard that I'd sat in the day before. Didn't stay long. We went back in through a random door, and ran into Eric, the amazing social worker who has been by my family's side through this whole thing. He does things like: being awesome, arranging for the room that my family has at the Ronald McDonald House, knowing lots of things, being awesome, did I mention being awesome? Anyway, we told him we were looking for adventure, and he showed us to an inconspicuous little door that led to a flight of stairs going down. He told us to take that tunnel, and we'd get to the nursing school.
The tunnel was amazing. It was entirely painted grey, and had a low ceiling, and all sorts of pipes running along the walls. The hallway was slanted slightly down.
There was this random painting on one of the walls. It was very colorful, and had lots of celtic knots and a sort of celtic knot bird. Completely out of context. Made me very happy. We tried to take a picture, but Rafi's phone died, and I had (foolishly) left my camera in my room.
We ventured down the tunnel. It was very warm down there, and wonderfully eerie. At the other end, there was a staircase leading up.
At the top, the door opened into this fancily carpeted entry-way. The nursing school. There was a big, high-ceilinged room with an oriental rug and a baby grand piano. Several students were eating lunch and studying. We went out the doors and into another courtyard. Saw a balcony somewhere over the building we had just exited. We went back inside, and tried to find a way to it. Going up the little carpeted stairs, I tried to take them two at a time. And collapsed. It was really strange. I didn't trip, I just sort of ended up on the floor. A little disturbing. I wasn't tired or anything, I guess my muscles just gave out. Sylvia had to help me up. I really don't like the idea of that sort of weakness. I felt completely fine.
We took the elevator to the top floor. Found another staircase, took those. But they dead-ended at a locked door. No balcony there. We wandered the carpeted halls, past open office doors. A couple of people asked if we needed help finding something.
We tried several different staircases, never found the balcony. I had no problem with the stairs! Heh, a big improvement from before I even got into the hospital (that's one of the reasons I got a blood test in the first place).
I needed to be back in fifteen minutes, so we started to make our way back. We exited the nursing school, crossed the street (we'd crossed under it through the tunnel), and ambled back to the hospital. Going up a grassy hill, I felt that weakness in my legs again. Was very careful not to fall.
That outing just made my day. We took the stairs back to the 4th floor, and I was hardly tired.
Then came the re-accessing, which was when I got the bad news that I started this post with.
Since I've already written about that, I'll skip over it.
Sylvia and Rafi were in the rec room, because of all the doctors, nurses, and the surgeon in my room. When I was free, I went out to join them. We did a puzzle on the air-hockey table, and listened to music from the jukebox (which has a lot of stuff on it, it's really cool). I was a bit shaken, but felt happy to still be with friends, and doing a puzzle. Which I get addicted to doing really fast. Sylvia had to go. Rafi and I finished that puzzle, and started another one. Nearly finished it, and then he had to go too.
I went back to my room, and kind of crashed. I had dinner, which was good, and then, at around 7, I fell asleep. And it was the deepest sleep I've had for a long time. It was really strange, and kind of cool. I dreamt that I was given anesthesia. And so I felt like I was given anesthesia. And I wonder if that is why it felt like such a deep sleep. Haha, I don't know.
Anyway, I had some other dreams, strange ones. Which I've been having lately. Can't remember them very well.
Woke up at around 10. Mom had gone home, and everything was quiet. I actually tried to go back to sleep, but couldn't. So I had a snack (because that's what I do), and did stuff (can't remember what, not much). At around 11 I decided to watch a movie. So I went to the fridge to get the last food I'd be able to eat until tomorrow (because they're giving me some sort of anesthesia, I can't eat anything past midnight). I watched "Hitch" on the hospital TV. Part way through, I realized it was midnight, and quickly ate my soup.
And now here I am. I think this is the first time I've written right up to the moment.
Cheryl has come in a couple of times while I've been writing this. We had some more random conversations. I really like talking to her.
Well, in around 6 hours I'll be deportified. Yikes.
G'night.
Monday, June 22, 2009
I Saw a House Today
It's been a week! I didn't realize I'd gone that long without writing.
First bit of news: It looks like, if all goes well, I'll be out of here next Friday. That's only for 2-5 days though. Then I'm back in the hospital for 5-ish days, for another round of the nasties (chemo nasties, that is).
But man, it's crazy realizing how soon that is. This Tuesday is the 4 week mark of my stay here. It does NOT feel like it's been that long.
So, I'll try to remember how this week went. I have a feeling there's going to be some generalizing, since some of it is kind of a blur.
Until around Thursday night, I kept on feeling lousy, sick, exhausted, and overall not-so-good. I stayed in bed most of the time. I had the wonderful company of family and friends, many of whom I'm sure I fell asleep on (not literally, of course :P ).
I got another spinal tap on Tuesday. Had chemo injected into my spinal fluid. That operation involved being transported, on my bed, to the ICU, where they gave me sleeping potion (fun stuff!).
The doctor took a while to get there, so we had a fun chat with Laurie first, who is awesome (I forget exactly what she does, but she's on my team of doctors, and participates in the doctor parties).
I was super happy to find out that my port was due to be re-accessed on the same day, which meant they could do that while I was asleep. It's done every week. I've only experienced it awake once. Basically, they take out the little black butterflies that have needles stuck into the port in my chest, and replace them. Which means two big pokes.
But this time the big pokes were done while I was asleep. I felt so sneaky for it.
I can't remember which evening it was, but one evening this week, I suddenly felt better. It was weird. I realized that I wasn't in pain, I was awake, and I actually felt pretty good. Mom, Dad, Erek and I played two games of Hearts (a card game) that night.
And the feeling has more or less lasted.
My counts are going up. Which means that I'm making neutrophils, red blood cells, AND platelets. Awesome!
I absolutely fell in love with the Minestrone soup that someone sent over. I don't think any kind of food has ever made me that happy before. Which is kind of strange. And I've been having cravings for green beans. I can't really stand the idea of cookies or sweets right now. My mom is super happy about all of it.
And, I didn't get a menu after I got back from the PICU last week. I didn't even ask for one. I basically had it memorized, and could order without needing it (and I ate a lot of soup anyway). But today I decided that I probably had forgotten about something, so I asked for a new one. And WOW, it was DIFFERENT! It had this whole section with stuff like tofu ravioli, Chile over rice, and eggplant parmesan. And just overall, it was huge.
I was disconnected from Winnifred (my IV pole, in case you missed it in previous posts) for about 4 hours today. So mom and I took a walk. It was so weird, not having to pull anything along with me. I'd gotten so used to it, I felt a little imbalanced at first.
For the first time since I've been here, we went down to the lobby, and went outside. Not just the "playdeck". Out, in front of the hospital. I didn't even know I was allowed to do that. It was amazing feeling the breeze on my bald head. I got to take my mask off, and enjoy the sunshine.
Some people in the halls stared, I guess at my hairlessness. Or maybe it was the Mickey Mouse mask... It was kind of amusing, and a little disturbing.
Speaking of hairlessness. Every time I look at a reflective surface, especially windows from far away, I remember that I'm bald. It's weird, forgetting like that. It feels pretty natural by now.
I haven't worn any hats or scarves or wigs yet, besides trying them on (I haven't even gotten my complimentary wig from downstairs yet (because I haven't asked. Tomorrow we're going to.)). But then again, I haven't been out in the world yet, besides right out the front doors. It's going to be interesting, seeing how I feel about my head once I'm out of here.
There's still stubble there, though it's coming out. Someone suggested lint rolling my head, which I think is hilarious. Apparently it's been done. I'm very tempted. But it's fun to pet my head!
Today I got stitches in the upper incision for my port, because it had gone three weeks without closing up at all. So a surgeon came up to my room a few hours ago, poked me with a syringe full of numbing stuff, and sewed me up.
Yeah, I've kind of gotten used to this stuff.
My room is bubbly. They put a little humidifier thing in, because it's so dry in here, and it bubbles away softly all of the time. Kind of like being in a fish tank. It's a sweet sound.
I hardly slept at all last night. Dad and I watched a movie until 2 AM, and then I was hungry (I can thank Prednisone for the appetite). So I went out to the fridge, heated up some soup ( <3 ), and took it back to my room. Ate in the dark, slept a bit, had some weird dreams. Woke up again, hungry. ANOTHER trip to the fridge, drank some Kefir (yummy yogurt drink), had some more soup. It was an interesting night. Up at 7 AM, breakfast, and finally, I slept until around 11:30.
Mom, Dad, Erek and I took a lengthy walk today, exploring the hallways. We went up to the 5th floor, and just wandered around. We ended up in the University of Rochester section, with narrow hallways, lots of research labs, and different views out of the windows (Me: "I haven't seen a house for so long!"). It was fun reading the signs on the doors, with their intimidating warnings ("Do not enter, do not knock, do not disturb").
Dad was up here just for the weekend. Erek flew back to DC today, though he'll be back in a few days. So tonight it was just mom and I, which hadn't happened yet. We had a nice, relaxed evening, with me getting the dressing for my port changed for the third time today, and stitches.
I'm back in normal clothes! Normal, as in, pajamas and a tank top. No more hospital gowns.
Well, I'm going to go have some soup, and then hopefully get some sleep.
First bit of news: It looks like, if all goes well, I'll be out of here next Friday. That's only for 2-5 days though. Then I'm back in the hospital for 5-ish days, for another round of the nasties (chemo nasties, that is).
But man, it's crazy realizing how soon that is. This Tuesday is the 4 week mark of my stay here. It does NOT feel like it's been that long.
So, I'll try to remember how this week went. I have a feeling there's going to be some generalizing, since some of it is kind of a blur.
Until around Thursday night, I kept on feeling lousy, sick, exhausted, and overall not-so-good. I stayed in bed most of the time. I had the wonderful company of family and friends, many of whom I'm sure I fell asleep on (not literally, of course :P ).
I got another spinal tap on Tuesday. Had chemo injected into my spinal fluid. That operation involved being transported, on my bed, to the ICU, where they gave me sleeping potion (fun stuff!).
The doctor took a while to get there, so we had a fun chat with Laurie first, who is awesome (I forget exactly what she does, but she's on my team of doctors, and participates in the doctor parties).
I was super happy to find out that my port was due to be re-accessed on the same day, which meant they could do that while I was asleep. It's done every week. I've only experienced it awake once. Basically, they take out the little black butterflies that have needles stuck into the port in my chest, and replace them. Which means two big pokes.
But this time the big pokes were done while I was asleep. I felt so sneaky for it.
I can't remember which evening it was, but one evening this week, I suddenly felt better. It was weird. I realized that I wasn't in pain, I was awake, and I actually felt pretty good. Mom, Dad, Erek and I played two games of Hearts (a card game) that night.
And the feeling has more or less lasted.
My counts are going up. Which means that I'm making neutrophils, red blood cells, AND platelets. Awesome!
I absolutely fell in love with the Minestrone soup that someone sent over. I don't think any kind of food has ever made me that happy before. Which is kind of strange. And I've been having cravings for green beans. I can't really stand the idea of cookies or sweets right now. My mom is super happy about all of it.
And, I didn't get a menu after I got back from the PICU last week. I didn't even ask for one. I basically had it memorized, and could order without needing it (and I ate a lot of soup anyway). But today I decided that I probably had forgotten about something, so I asked for a new one. And WOW, it was DIFFERENT! It had this whole section with stuff like tofu ravioli, Chile over rice, and eggplant parmesan. And just overall, it was huge.
I was disconnected from Winnifred (my IV pole, in case you missed it in previous posts) for about 4 hours today. So mom and I took a walk. It was so weird, not having to pull anything along with me. I'd gotten so used to it, I felt a little imbalanced at first.
For the first time since I've been here, we went down to the lobby, and went outside. Not just the "playdeck". Out, in front of the hospital. I didn't even know I was allowed to do that. It was amazing feeling the breeze on my bald head. I got to take my mask off, and enjoy the sunshine.
Some people in the halls stared, I guess at my hairlessness. Or maybe it was the Mickey Mouse mask... It was kind of amusing, and a little disturbing.
Speaking of hairlessness. Every time I look at a reflective surface, especially windows from far away, I remember that I'm bald. It's weird, forgetting like that. It feels pretty natural by now.
I haven't worn any hats or scarves or wigs yet, besides trying them on (I haven't even gotten my complimentary wig from downstairs yet (because I haven't asked. Tomorrow we're going to.)). But then again, I haven't been out in the world yet, besides right out the front doors. It's going to be interesting, seeing how I feel about my head once I'm out of here.
There's still stubble there, though it's coming out. Someone suggested lint rolling my head, which I think is hilarious. Apparently it's been done. I'm very tempted. But it's fun to pet my head!
Today I got stitches in the upper incision for my port, because it had gone three weeks without closing up at all. So a surgeon came up to my room a few hours ago, poked me with a syringe full of numbing stuff, and sewed me up.
Yeah, I've kind of gotten used to this stuff.
My room is bubbly. They put a little humidifier thing in, because it's so dry in here, and it bubbles away softly all of the time. Kind of like being in a fish tank. It's a sweet sound.
I hardly slept at all last night. Dad and I watched a movie until 2 AM, and then I was hungry (I can thank Prednisone for the appetite). So I went out to the fridge, heated up some soup ( <3 ), and took it back to my room. Ate in the dark, slept a bit, had some weird dreams. Woke up again, hungry. ANOTHER trip to the fridge, drank some Kefir (yummy yogurt drink), had some more soup. It was an interesting night. Up at 7 AM, breakfast, and finally, I slept until around 11:30.
Mom, Dad, Erek and I took a lengthy walk today, exploring the hallways. We went up to the 5th floor, and just wandered around. We ended up in the University of Rochester section, with narrow hallways, lots of research labs, and different views out of the windows (Me: "I haven't seen a house for so long!"). It was fun reading the signs on the doors, with their intimidating warnings ("Do not enter, do not knock, do not disturb").
Dad was up here just for the weekend. Erek flew back to DC today, though he'll be back in a few days. So tonight it was just mom and I, which hadn't happened yet. We had a nice, relaxed evening, with me getting the dressing for my port changed for the third time today, and stitches.
I'm back in normal clothes! Normal, as in, pajamas and a tank top. No more hospital gowns.
Well, I'm going to go have some soup, and then hopefully get some sleep.
Sunday, June 14, 2009
The First Big "Bump" in My Treatment
Oh jeez, I'm really behind.
Lots and lots of stuff has happened since the last time I wrote a real post. A lot of junk, but also some really good stuff.
One of my excuses for not writing is that my hands hadn't been fully free until a few hours ago, because of several things, and it was a real pain to type.
OK, so I had a pretty lousy day on Thursday. I spiked a fever Wednesday night, didn't sleep much at all, had burning stomach crampy things, felt nauseous, and at some points was shivering hugely and uncontrollably. Yeah.... overall, not too fun.
For part of Thursday I felt ok. Then in the afternoon I started to shiver again. My teeth were chattering CRAZY loud, and I was shaking more than I ever have before. My fever got to about 102.6 F.
Sylvia and Bronwyn were there to hold my hands and give support, which was wonderful. At one point I found it highly amusing to sing through my chattering teeth, getting these rhythmic long notes with fun textures. But for the most part it was just really frustrating, having my body doing those things without my permission. So that went on for a few hours. Finally a bunch of doctors came in, and "listened" with their stethoscopes (like they do all the time), and talked about stuff (can't remember what).
I got to use a bedpan, which was an experience in itself. Not really fun. Very weird. Definitely uncomfortable. Not easy to do.
They didn't want me to get out of bed. My blood pressure was really low, and my heart rate was really high, and I was still shaking. They told me they didn't want me to pass out.
After some more talking, and a couple of re-visits from the doctors, they decided to take me to the PICU (Pediatric Intensive Care Unit). They were pretty sure I had an infection, which is not a good thing at all.
They said I might not get this room back. So we actually had to pack everything up. Well, my family did, I wasn't allowed out of bed.
The walls appeared again, and the surfaces were cleared, and everything was put into "Personal Belonging" bags. Sad!
They wheeled me down a few hallways, through some sets of doors, and into this glossy, shiny set of halls. No more paintings of squirrels eating peoples' picnics here. Even the ceilings had dark glass and little light patterns. Very snazzy place. My new room was much bigger. It was cleverly shaped and crafted, with interesting paint designs. Even the TV screen was fancy.
The nurse/doctor ladies/dude (three main ones) were really really nice, and cool.
One of the first things they did was put one of those clear in-the-nostril oxygen tubes around my head. It made me feel sooo much like a patient (as if I didn't already). But the gentle air flow was nice (even though at that point I didn't really need it).
I had to have an arterial line put in, so they could constantly monitor my vitals. The idea freaked me out. They were going to stick an IV-like thing into the artery in my wrist?! Yeah, they were. Even one of the doctors said it would be awful. I thought she meant "awful" as in painful. I asked about it. Turned out she meant "awful" as in "really annoying". I relaxed a lot after that. "Annoying" hardly bothers me anymore.
So, the dude (really nice guy, fairly young, can't remember his name) got all his equipment ready, put a blanket under my arm to protect the sheets, and every nurse/doctor gloved up. He syringed (is it a word? It is now.) some numbing stuff into my wrist. He tried to put the line in twice on that wrist (my left one, so that I could keep my right hand free). The first time just didn't work. The second time he got the tube in, but when he tried to put the wire in something exciting happened.
>Warning< If you don't like to hear about blood stuff that is kind of gross, you might want to skip over the next few sentences.
I wasn't really watching, but I felt a small fountain of blood LAND back on my hand. It had actually SQUIRTED! And I have NO clue why this didn't bother me. Instead, I found it really fascinating. I knew arteries had lots of pressure, but I'd never seen it (or rather, felt it) in action.
Anyway, they gave up on that wrist. Moved everything over to my other side. Numbed my right wrist. Got the IA (I think that's what they're called) in, finally. Relief.
So here's a crazy thing. There was something about my veins stretching, shrinking, and doing some weird things, because of who-knows-what (ok, I just can't remember). So they speed-pumped roughly two and a half gallons of fluid into me. Gahhh, I felt sooo puffy, over-full, and weighed down. It was harder to breathe. My right lung (I'm pretty sure that's what it was) started hurting, and made it even more painful to breathe.
So yeah. I slept there that night, but not very well and not very much. The overnight ICU (really PICU, but they kept calling it the ICU) nurse (one of the ladies who was there when I got there) was really sweet, and super cool. Since it was the ICU, she only had one other patient (a baby who is apparently very cute), and she spent the night doing paperwork on the other side of the glass in my room. The doors of my room were glass (though there was a curtain for when I used the commode (another interesting new experience)).
I was really weak. It was hard to stand, because my legs felt achy and jelly-like. It would have been very hard to get across the room to the bathroom, even with help from a nurse. I hated feeling that helpless.
The next day (Friday) was long, but I started to feel better. I stayed in bed all day (of course).
People came to visit.
Claire, Sue, and Betty came in the morning. Claire played part of her senior flute recital (which had been the evening before) for me, which was really sweet and really awesome.
We hung out for a while. They (the moms, (mom, Sue, and Betty)) went for a walk. Eventually they had to go. We had some family time.
At one point, Dan (from the Rochester Contra dance) came and hung out for a while. It was nice having visitors while I was in the ICU.
Even some of the nurses from 41400 came and visited, which was really sweet.
That evening they pronounced me stable, and said I'd get to move back to 41400 that night.
My arterial line was going to come out. And for some reason I wasn't excited about it. Once it was in, I liked it better than the blood pressure cuff squeezing my arm. But out it came, and I couldn't even feel it when she slid it out. The nurse put pressure on my wrist for over five minutes, to make sure it stopped bleeding. It didn't really even bleed that much. Then I got a pressure bandage (just a stretchy piece of really sticky bandage, with gauze underneath).
We packed up our stuff again (much less this time, and they even gave us a cart), and they wheeled me out. It was nice to be going back to my unit (and it turned out I got my old room back!), but for some reason I wasn't super excited. I dunno why... I guess I kind of liked it in the ICU. But of course, I didn't need to be there, and other people did, and it would have been silly for me to stay there.
I did get a warm welcome when I got back. The nurses seemed really happy.
My room felt so small after the ICU! I even felt a little claustrophobic.
So I'm all moved back in now. And I AM happy to be back.
Yesterday (Saturday) was kind of a lie-low day. People visited. I can't even remember what I did all day. My lung started feeling better. I had some stomach crampies at some point, I think. I was able to stand up again, gradually getting stronger.
Oh! Yesterday, I was sitting on the loo, and I ran my hand through my hair, and.... more hair than usual came out! It was so exciting. I started pulling gently, and it just sort of slid out. I called out to whoever was in my room, and as soon as I was decent I had them come in and watch. I was overly excited. I know a lot of people would have been devastated. But I had been waiting for this.
I spent the next half hour sitting in my room with a bucket on my lap, sliding my hair out. It didn't really come out in patches, like they said it would. Instead, lots of strands would come out together. It didn't even really look like it was thinning, and I didn't get obvious bald spots.
Eventually I got tired of doing that. It didn't come out a lot on its own, so I didn't have to worry about making a huge mess all over the place. It did become a bit of a habit to run my hands through my hair and pull it out, though.
Today (Sunday) has been pretty good. I'm feeling a lot better. I got out of my room, walked around a bit, had visitors.
Very exciting event: I cut my hair, in preparation for shaving. It was sooooo much fun. I've been wanting to do it for a while, but never got up the nerves.
I got a pair of scissors and another bucket, and went at it. My dad held a mirror for me. My whole family, and Bronwyn, watched. I sat on my bed, and just took random chunks out. The scissors weren't great; they were just whatever the nurses had on hand. But they worked.
I gave myself funky layers, then merged it into a spiky pixy cut (my hair was especially good to spike, because I hadn't washed it for a while). We teased it into all sorts of strange shapes, and took lots of pictures, and had a blast. And the best thing is, I LOVED how it looked. I really wish I'd gone for it a long time ago.
Then my dad got out the buzzer, and started to give me a mohawk. But we didn't charge the shaver enough, so I have a sort of half-a-hawk now.
This other patient down the hall, a seventeen-year-old girl named Julia, has been wanting to know how I've been doing ever since she found out I was being taken to the ICU.
She's INCREDIBLY sweet. Her dad is too, and has become fast friends with my parents. They've been getting a lot of food brought to them too, more than they can eat, and he's been bringing it over for us. It's just been unbelievable how sweet and caring they've been.
Julia had a sort of tumor growing on her chest, and had to get some major surgery done a little bit ago. She seems to be recovering nicely. She's going home around Tuesday. She has come over for brief visits a few times, and today she gave me a beautiful painting of flowers that she painted for me while she was here. I'm going to make her a friendship bracelet.
I'm getting an ultra-sound (a kind of x-ray thingy that is interactive, or something like that) of my legs tonight, to check for blood clots. My feet are really puffy and funny looking. They think it's from all the fluids, but they're going to check anyway.
I sort of gave up on wearing real clothes (aka, my pajamas and a tank top), since the whole ICU episode. It's just so much easier to wear a gown.
I have a collection of disposable oxygen sensors stuck to my window like little electronic bug things. They go around one of my fingers, and plug into a little machine, measuring how much oxygen I have in my blood. When it gets too low, the machine beeps, and I have to take some deeper breaths to bring it back up to the mid-90s. I was using that during my whole time in the ICU, all of yesterday, and some of today. That was what was making it hard to type, even once the artery line was taken out. Finally got to take it off today.
My belief that all hospital food is bad (or at least semi-bad. I have had some good things here) has been washed down the drain ever since the default meal they brought me for dinner today (they bring food to everyone who doesn't order, and it's basically random).
It was stuffed pasta shells with amazing sauce and lots of goodies packed inside. And it was AMAZING. I wasn't even all that hungry, so I can't use that as an excuse. They still sent me super-soggy-green-bean-delight though, so don't worry, they haven't completely turned around.
I'm still not feeling great (I haven't felt great for a long time). My stomach is complaining, I have a bit of a headache, and I'm sleepy most of the time. But this sure beats Thursday.
I'm going to leave off for now.
Keep on being the amazing people that you are, know that you ARE amazing, and don't completely write off the idea of giving yourself a hair cut. It's so much fun, and you might like how it turns out!
Lots and lots of stuff has happened since the last time I wrote a real post. A lot of junk, but also some really good stuff.
One of my excuses for not writing is that my hands hadn't been fully free until a few hours ago, because of several things, and it was a real pain to type.
OK, so I had a pretty lousy day on Thursday. I spiked a fever Wednesday night, didn't sleep much at all, had burning stomach crampy things, felt nauseous, and at some points was shivering hugely and uncontrollably. Yeah.... overall, not too fun.
For part of Thursday I felt ok. Then in the afternoon I started to shiver again. My teeth were chattering CRAZY loud, and I was shaking more than I ever have before. My fever got to about 102.6 F.
Sylvia and Bronwyn were there to hold my hands and give support, which was wonderful. At one point I found it highly amusing to sing through my chattering teeth, getting these rhythmic long notes with fun textures. But for the most part it was just really frustrating, having my body doing those things without my permission. So that went on for a few hours. Finally a bunch of doctors came in, and "listened" with their stethoscopes (like they do all the time), and talked about stuff (can't remember what).
I got to use a bedpan, which was an experience in itself. Not really fun. Very weird. Definitely uncomfortable. Not easy to do.
They didn't want me to get out of bed. My blood pressure was really low, and my heart rate was really high, and I was still shaking. They told me they didn't want me to pass out.
After some more talking, and a couple of re-visits from the doctors, they decided to take me to the PICU (Pediatric Intensive Care Unit). They were pretty sure I had an infection, which is not a good thing at all.
They said I might not get this room back. So we actually had to pack everything up. Well, my family did, I wasn't allowed out of bed.
The walls appeared again, and the surfaces were cleared, and everything was put into "Personal Belonging" bags. Sad!
They wheeled me down a few hallways, through some sets of doors, and into this glossy, shiny set of halls. No more paintings of squirrels eating peoples' picnics here. Even the ceilings had dark glass and little light patterns. Very snazzy place. My new room was much bigger. It was cleverly shaped and crafted, with interesting paint designs. Even the TV screen was fancy.
The nurse/doctor ladies/dude (three main ones) were really really nice, and cool.
One of the first things they did was put one of those clear in-the-nostril oxygen tubes around my head. It made me feel sooo much like a patient (as if I didn't already). But the gentle air flow was nice (even though at that point I didn't really need it).
I had to have an arterial line put in, so they could constantly monitor my vitals. The idea freaked me out. They were going to stick an IV-like thing into the artery in my wrist?! Yeah, they were. Even one of the doctors said it would be awful. I thought she meant "awful" as in painful. I asked about it. Turned out she meant "awful" as in "really annoying". I relaxed a lot after that. "Annoying" hardly bothers me anymore.
So, the dude (really nice guy, fairly young, can't remember his name) got all his equipment ready, put a blanket under my arm to protect the sheets, and every nurse/doctor gloved up. He syringed (is it a word? It is now.) some numbing stuff into my wrist. He tried to put the line in twice on that wrist (my left one, so that I could keep my right hand free). The first time just didn't work. The second time he got the tube in, but when he tried to put the wire in something exciting happened.
>Warning< If you don't like to hear about blood stuff that is kind of gross, you might want to skip over the next few sentences.
I wasn't really watching, but I felt a small fountain of blood LAND back on my hand. It had actually SQUIRTED! And I have NO clue why this didn't bother me. Instead, I found it really fascinating. I knew arteries had lots of pressure, but I'd never seen it (or rather, felt it) in action.
Anyway, they gave up on that wrist. Moved everything over to my other side. Numbed my right wrist. Got the IA (I think that's what they're called) in, finally. Relief.
So here's a crazy thing. There was something about my veins stretching, shrinking, and doing some weird things, because of who-knows-what (ok, I just can't remember). So they speed-pumped roughly two and a half gallons of fluid into me. Gahhh, I felt sooo puffy, over-full, and weighed down. It was harder to breathe. My right lung (I'm pretty sure that's what it was) started hurting, and made it even more painful to breathe.
So yeah. I slept there that night, but not very well and not very much. The overnight ICU (really PICU, but they kept calling it the ICU) nurse (one of the ladies who was there when I got there) was really sweet, and super cool. Since it was the ICU, she only had one other patient (a baby who is apparently very cute), and she spent the night doing paperwork on the other side of the glass in my room. The doors of my room were glass (though there was a curtain for when I used the commode (another interesting new experience)).
I was really weak. It was hard to stand, because my legs felt achy and jelly-like. It would have been very hard to get across the room to the bathroom, even with help from a nurse. I hated feeling that helpless.
The next day (Friday) was long, but I started to feel better. I stayed in bed all day (of course).
People came to visit.
Claire, Sue, and Betty came in the morning. Claire played part of her senior flute recital (which had been the evening before) for me, which was really sweet and really awesome.
We hung out for a while. They (the moms, (mom, Sue, and Betty)) went for a walk. Eventually they had to go. We had some family time.
At one point, Dan (from the Rochester Contra dance) came and hung out for a while. It was nice having visitors while I was in the ICU.
Even some of the nurses from 41400 came and visited, which was really sweet.
That evening they pronounced me stable, and said I'd get to move back to 41400 that night.
My arterial line was going to come out. And for some reason I wasn't excited about it. Once it was in, I liked it better than the blood pressure cuff squeezing my arm. But out it came, and I couldn't even feel it when she slid it out. The nurse put pressure on my wrist for over five minutes, to make sure it stopped bleeding. It didn't really even bleed that much. Then I got a pressure bandage (just a stretchy piece of really sticky bandage, with gauze underneath).
We packed up our stuff again (much less this time, and they even gave us a cart), and they wheeled me out. It was nice to be going back to my unit (and it turned out I got my old room back!), but for some reason I wasn't super excited. I dunno why... I guess I kind of liked it in the ICU. But of course, I didn't need to be there, and other people did, and it would have been silly for me to stay there.
I did get a warm welcome when I got back. The nurses seemed really happy.
My room felt so small after the ICU! I even felt a little claustrophobic.
So I'm all moved back in now. And I AM happy to be back.
Yesterday (Saturday) was kind of a lie-low day. People visited. I can't even remember what I did all day. My lung started feeling better. I had some stomach crampies at some point, I think. I was able to stand up again, gradually getting stronger.
Oh! Yesterday, I was sitting on the loo, and I ran my hand through my hair, and.... more hair than usual came out! It was so exciting. I started pulling gently, and it just sort of slid out. I called out to whoever was in my room, and as soon as I was decent I had them come in and watch. I was overly excited. I know a lot of people would have been devastated. But I had been waiting for this.
I spent the next half hour sitting in my room with a bucket on my lap, sliding my hair out. It didn't really come out in patches, like they said it would. Instead, lots of strands would come out together. It didn't even really look like it was thinning, and I didn't get obvious bald spots.
Eventually I got tired of doing that. It didn't come out a lot on its own, so I didn't have to worry about making a huge mess all over the place. It did become a bit of a habit to run my hands through my hair and pull it out, though.
Today (Sunday) has been pretty good. I'm feeling a lot better. I got out of my room, walked around a bit, had visitors.
Very exciting event: I cut my hair, in preparation for shaving. It was sooooo much fun. I've been wanting to do it for a while, but never got up the nerves.
I got a pair of scissors and another bucket, and went at it. My dad held a mirror for me. My whole family, and Bronwyn, watched. I sat on my bed, and just took random chunks out. The scissors weren't great; they were just whatever the nurses had on hand. But they worked.
I gave myself funky layers, then merged it into a spiky pixy cut (my hair was especially good to spike, because I hadn't washed it for a while). We teased it into all sorts of strange shapes, and took lots of pictures, and had a blast. And the best thing is, I LOVED how it looked. I really wish I'd gone for it a long time ago.
Then my dad got out the buzzer, and started to give me a mohawk. But we didn't charge the shaver enough, so I have a sort of half-a-hawk now.
This other patient down the hall, a seventeen-year-old girl named Julia, has been wanting to know how I've been doing ever since she found out I was being taken to the ICU.
She's INCREDIBLY sweet. Her dad is too, and has become fast friends with my parents. They've been getting a lot of food brought to them too, more than they can eat, and he's been bringing it over for us. It's just been unbelievable how sweet and caring they've been.
Julia had a sort of tumor growing on her chest, and had to get some major surgery done a little bit ago. She seems to be recovering nicely. She's going home around Tuesday. She has come over for brief visits a few times, and today she gave me a beautiful painting of flowers that she painted for me while she was here. I'm going to make her a friendship bracelet.
I'm getting an ultra-sound (a kind of x-ray thingy that is interactive, or something like that) of my legs tonight, to check for blood clots. My feet are really puffy and funny looking. They think it's from all the fluids, but they're going to check anyway.
I sort of gave up on wearing real clothes (aka, my pajamas and a tank top), since the whole ICU episode. It's just so much easier to wear a gown.
I have a collection of disposable oxygen sensors stuck to my window like little electronic bug things. They go around one of my fingers, and plug into a little machine, measuring how much oxygen I have in my blood. When it gets too low, the machine beeps, and I have to take some deeper breaths to bring it back up to the mid-90s. I was using that during my whole time in the ICU, all of yesterday, and some of today. That was what was making it hard to type, even once the artery line was taken out. Finally got to take it off today.
My belief that all hospital food is bad (or at least semi-bad. I have had some good things here) has been washed down the drain ever since the default meal they brought me for dinner today (they bring food to everyone who doesn't order, and it's basically random).
It was stuffed pasta shells with amazing sauce and lots of goodies packed inside. And it was AMAZING. I wasn't even all that hungry, so I can't use that as an excuse. They still sent me super-soggy-green-bean-del
I'm still not feeling great (I haven't felt great for a long time). My stomach is complaining, I have a bit of a headache, and I'm sleepy most of the time. But this sure beats Thursday.
I'm going to leave off for now.
Keep on being the amazing people that you are, know that you ARE amazing, and don't completely write off the idea of giving yourself a hair cut. It's so much fun, and you might like how it turns out!
Monday, June 8, 2009
The Clock In Here is Slightly Crooked
So, it's been a while since I wrote last.
I can't find my nifty chemo calendar, and I can't quite remember, so I'll have to generalize about the last few days.
I got "big" doses of chemo Wednesday, Thursday, and Friday. The Vincristine was bright yellow and probably caused the nasty mouth sores that I had over the next few days. Dexrazoxane and Doxorubicin probably also helped in making me want to do nothing but sleep and look at my sheets for two days.
So yeah. That's about what I did. Exciting, huh? But really, I did feel pretty yucky, and I probably wasn't the most lively person to visit.
Good news is that I'm not getting any more "big" stuff for a few days (someone said it wouldn't be until the 16th, but I'm pretty sure it's sooner than that).
Highlight (from before the stuff kicked in): The flute choir that I play with at the Eastman Community Music School came HERE to practice. It was absolutely amazing. On Wednesday at 5:30 PM, Sophia (our conductor/teacher), Christina, Lucy, Victor, Kerry, and Melissa came trooping up to my door. We all went over to the lounge-ish place, set up our stands, put our flutes together, and serenaded the fish (in the fish tank, yeah). It was so wonderful getting to play with them (it was our last rehearsal this semester).
Ok, so I know you've been waiting. The dinos in the IV fluid. Overall reaction: "What is THAT?!" To which I reply: "Oh, that's my dinosaur incubator." And they say: "Ohhh."
But I think it was the pharmacist who was the most confused by it.
Some people would look at it for a bit, try different angles, give it a squish, and finally ask me about it. Some poeple have suggested other things to try too, like sea monkeys, fish, and other hatchable fake critters.
Anyway, I took it down on Friday (?), because I was feeling nauseous, and every time I looked at it I would feel even more nauseous (I don't know why...). But I'm planning on trying something else soon.
During the last few days I didn't eat much. Mostly because I was afraid I wouldn't be able to keep it down (I only failed once!). And then someone sent some AMAZING soup (yesterday? The day before?), and I got my appetite back. And THEN the home made Chinese food came today. I hadn't eaten a full meal for days, and it was amazing.
I finally took a shower today. I (obviously) didn't feel up to it the last few days, and honestly, I didn't really care. But then I woke up at around 4 AM this morning, feeling blechy and dirty and gross, and almost took a shower right then. But showers are complicated when there's a mass of bandage on your chest that you're not supposed to get wet. So I didn't actually take one until late this afternoon. I feel human again.
I've been wearing these bands that go around my wrists, called "Sea Bands", to help with nausea. And I think they really work (sooo many people have said they do, too). Or maybe I'm just done being nauseous for now.
Today one of the "incisions" they made to put my port-thingy in kind of exploded. Ok, it didn't really explode, it just opened up and bled a lot. Didn't hurt much, luckily. Some different people came in to look at it (doctors, a surgeon, nurses), and then one of them put another liquid bandage over it (so cool. It's roll-on, feels kind of like glue, and dries clear). I think it might have happened because I tried to shoot hoops with the basketball yesterday. Right. Guess I'll have to let it heal a bit more before trying again.
Bronwyn is flying in from Illinois tomorrow. I'm SUPER excited. I haven't seen her for so long, and I'm honored that she's making a special trip out to spend hours in a hospital with me.
Is it ok that I write mostly when I feel good? That might make it seem like I always feel good here. It's just that when I don't feel good, I generally don't feel like writing.
Also, I find it a little crazy that I haven't mentioned a word about this in my paper journal. I haven't written at all in there since I got here. And I've been consistently journaling for years. I feel like these posts are doing the same for me, even more maybe, than pens would. Which is completely different from what I would have said two weeks ago. I guess I really need people to read it, and once I've written it once I can't do it again.
Feeling a little dizzy and stomach-achy, so I think I'll go try to sleep it off. G'night.
I can't find my nifty chemo calendar, and I can't quite remember, so I'll have to generalize about the last few days.
I got "big" doses of chemo Wednesday, Thursday, and Friday. The Vincristine was bright yellow and probably caused the nasty mouth sores that I had over the next few days. Dexrazoxane and Doxorubicin probably also helped in making me want to do nothing but sleep and look at my sheets for two days.
So yeah. That's about what I did. Exciting, huh? But really, I did feel pretty yucky, and I probably wasn't the most lively person to visit.
Good news is that I'm not getting any more "big" stuff for a few days (someone said it wouldn't be until the 16th, but I'm pretty sure it's sooner than that).
Highlight (from before the stuff kicked in): The flute choir that I play with at the Eastman Community Music School came HERE to practice. It was absolutely amazing. On Wednesday at 5:30 PM, Sophia (our conductor/teacher), Christina, Lucy, Victor, Kerry, and Melissa came trooping up to my door. We all went over to the lounge-ish place, set up our stands, put our flutes together, and serenaded the fish (in the fish tank, yeah). It was so wonderful getting to play with them (it was our last rehearsal this semester).
Ok, so I know you've been waiting. The dinos in the IV fluid. Overall reaction: "What is THAT?!" To which I reply: "Oh, that's my dinosaur incubator." And they say: "Ohhh."
But I think it was the pharmacist who was the most confused by it.
Some people would look at it for a bit, try different angles, give it a squish, and finally ask me about it. Some poeple have suggested other things to try too, like sea monkeys, fish, and other hatchable fake critters.
Anyway, I took it down on Friday (?), because I was feeling nauseous, and every time I looked at it I would feel even more nauseous (I don't know why...). But I'm planning on trying something else soon.
During the last few days I didn't eat much. Mostly because I was afraid I wouldn't be able to keep it down (I only failed once!). And then someone sent some AMAZING soup (yesterday? The day before?), and I got my appetite back. And THEN the home made Chinese food came today. I hadn't eaten a full meal for days, and it was amazing.
I finally took a shower today. I (obviously) didn't feel up to it the last few days, and honestly, I didn't really care. But then I woke up at around 4 AM this morning, feeling blechy and dirty and gross, and almost took a shower right then. But showers are complicated when there's a mass of bandage on your chest that you're not supposed to get wet. So I didn't actually take one until late this afternoon. I feel human again.
I've been wearing these bands that go around my wrists, called "Sea Bands", to help with nausea. And I think they really work (sooo many people have said they do, too). Or maybe I'm just done being nauseous for now.
Today one of the "incisions" they made to put my port-thingy in kind of exploded. Ok, it didn't really explode, it just opened up and bled a lot. Didn't hurt much, luckily. Some different people came in to look at it (doctors, a surgeon, nurses), and then one of them put another liquid bandage over it (so cool. It's roll-on, feels kind of like glue, and dries clear). I think it might have happened because I tried to shoot hoops with the basketball yesterday. Right. Guess I'll have to let it heal a bit more before trying again.
Bronwyn is flying in from Illinois tomorrow. I'm SUPER excited. I haven't seen her for so long, and I'm honored that she's making a special trip out to spend hours in a hospital with me.
Is it ok that I write mostly when I feel good? That might make it seem like I always feel good here. It's just that when I don't feel good, I generally don't feel like writing.
Also, I find it a little crazy that I haven't mentioned a word about this in my paper journal. I haven't written at all in there since I got here. And I've been consistently journaling for years. I feel like these posts are doing the same for me, even more maybe, than pens would. Which is completely different from what I would have said two weeks ago. I guess I really need people to read it, and once I've written it once I can't do it again.
Feeling a little dizzy and stomach-achy, so I think I'll go try to sleep it off. G'night.
Wednesday, June 3, 2009
Dinos in the IV Fluid
So, I set up a bit of amusement (I guess you would call it a prank) today, with the help of Rachel, Erek, and a few nurses. Rachel sent me an impressive envelope full of stuff. It was awesome, and made me laugh a ton (thanks Rachel!). Included was a package of expanding foam dinosaurs in little capsules (just add water).
I thought it would be fun to have a big dinosaur in my IV fluid for the doctor party tomorrow morning (the doctor party is what I call "rounding", a morning meeting in my room with the group of people who really influence what goes on with my treatment. This meeting is headed by Dr. Bruckner, with a sort of commentary from Tina (awesome person!)).
But of course I couldn't put a dinosaur in my ACTUAL IV fluid...
It turned out that right when this idea was forming in my head, Heather (one of the many really cool nurses) was changing my IV fluid.
Apparently they needed to adjust the amount of Dextrose in the mixture, so she was going to get rid of the bag that was currently going. I asked if we could keep it. And told her about the idea. She got all excited, and brought tape and scissors for us to use.
Much later, Erek and I were in the bathroom, emptying the old IV fluid (salt water, basically) into the sink (we had inserted the capsule, through a slit we had made, directly into the fluid, but it wasn't expanding). We re-filled the bag with warm water (just as the dinosaur package suggested), and added a new capsule. That one expanded nicely. I put three more in. But they kind of floated, and weren't too obvious. So, after telling Jamie (the night nurse) about the plan, I asked if she could think of anything blue that we could put in there. About half an hour later she came in with a bottle of blue Gatorade and a large syringe.
Now an extra IV bag hangs off of Winnifred, containing foamy dinosaurs and blue fluid.
Apparently Heather requested to be my nurse for tomorrow morning. She seemed really excited about all of this, and wanted to be there for the doctor party (all of this is mainly for them).
I really hope they notice!
So. Today the chemo included 4 chemicals, three of which were completely new. These came at around 5 PM. Two nurses were there, Heather and another one (can't remember her name). Heather put on this insane suit made of light blue papery material, rubber gloves, and a mask with an eye shield attached (clear piece of plastic). We complimented her on the new fashion, and she agreed that it was simply smashing.
One of the chemicals (Vincristine) was added to my IV line through a little syringe. They had to make sure it was inserted over the length of one minute.
Next was a chemical starting with "Dex," which would protect my heart from the Doxorubicin (which would be next). It was in a cute little IV bag.
Finally it was Doxorubicin's turn. Red (like cranberry juice), foreboding (with the biohazard symbol on its container), and coming from another cute little IV bag, Doxorubicin slid through the tubing and into my veins.
It took about 45 minutes for all of that to happen. After everything they gave me another cute little IV bag full of stuff that would prevent the nausea and other things that were likely side affects.
Anyway, I never really felt any different. One more round done.
Raymi finally got to come visit today! So did Alex (I hadn't seen her since we first met, around 5 years ago), Jane, Rafi, and Diana. That sounds like a lot, but really it was pretty relaxed.
I went to the "activity" out at the playdeck, which was paint splattering. Spinny style. We (one other patient and someone who does the activities) taped four huge pieces of paper to the floor, filled Styrofoam plates with paint, and put on white plastic smocks. Then we each grabbed a wooden top, coated the edges with the colors of our choice, and spun the tops on the paper. Paint flew everywhere, and it was really fun.
I met a few other patients. One of them was going to college in one of the cities a few hours east-ish of here (Syracuse, Binghamton? Can't remember...). Not many people came, though. We played Uno after our knees started hurting too much.
I've been having a hard time believing that I've been here for a week. Man, it flew! Sure, it feels like forever since my life was "normal", but it also feels like I've hardly been here at all.
It's sad thinking of what I would have been doing this week, and the next... I'm missing my last dance performance ever, which is next weekend.
But I've accepted that this is what I'm going to be doing, and I'm moving on.
I thought it would be fun to have a big dinosaur in my IV fluid for the doctor party tomorrow morning (the doctor party is what I call "rounding", a morning meeting in my room with the group of people who really influence what goes on with my treatment. This meeting is headed by Dr. Bruckner, with a sort of commentary from Tina (awesome person!)).
But of course I couldn't put a dinosaur in my ACTUAL IV fluid...
It turned out that right when this idea was forming in my head, Heather (one of the many really cool nurses) was changing my IV fluid.
Apparently they needed to adjust the amount of Dextrose in the mixture, so she was going to get rid of the bag that was currently going. I asked if we could keep it. And told her about the idea. She got all excited, and brought tape and scissors for us to use.
Much later, Erek and I were in the bathroom, emptying the old IV fluid (salt water, basically) into the sink (we had inserted the capsule, through a slit we had made, directly into the fluid, but it wasn't expanding). We re-filled the bag with warm water (just as the dinosaur package suggested), and added a new capsule. That one expanded nicely. I put three more in. But they kind of floated, and weren't too obvious. So, after telling Jamie (the night nurse) about the plan, I asked if she could think of anything blue that we could put in there. About half an hour later she came in with a bottle of blue Gatorade and a large syringe.
Now an extra IV bag hangs off of Winnifred, containing foamy dinosaurs and blue fluid.
Apparently Heather requested to be my nurse for tomorrow morning. She seemed really excited about all of this, and wanted to be there for the doctor party (all of this is mainly for them).
I really hope they notice!
So. Today the chemo included 4 chemicals, three of which were completely new. These came at around 5 PM. Two nurses were there, Heather and another one (can't remember her name). Heather put on this insane suit made of light blue papery material, rubber gloves, and a mask with an eye shield attached (clear piece of plastic). We complimented her on the new fashion, and she agreed that it was simply smashing.
One of the chemicals (Vincristine) was added to my IV line through a little syringe. They had to make sure it was inserted over the length of one minute.
Next was a chemical starting with "Dex," which would protect my heart from the Doxorubicin (which would be next). It was in a cute little IV bag.
Finally it was Doxorubicin's turn. Red (like cranberry juice), foreboding (with the biohazard symbol on its container), and coming from another cute little IV bag, Doxorubicin slid through the tubing and into my veins.
It took about 45 minutes for all of that to happen. After everything they gave me another cute little IV bag full of stuff that would prevent the nausea and other things that were likely side affects.
Anyway, I never really felt any different. One more round done.
Raymi finally got to come visit today! So did Alex (I hadn't seen her since we first met, around 5 years ago), Jane, Rafi, and Diana. That sounds like a lot, but really it was pretty relaxed.
I went to the "activity" out at the playdeck, which was paint splattering. Spinny style. We (one other patient and someone who does the activities) taped four huge pieces of paper to the floor, filled Styrofoam plates with paint, and put on white plastic smocks. Then we each grabbed a wooden top, coated the edges with the colors of our choice, and spun the tops on the paper. Paint flew everywhere, and it was really fun.
I met a few other patients. One of them was going to college in one of the cities a few hours east-ish of here (Syracuse, Binghamton? Can't remember...). Not many people came, though. We played Uno after our knees started hurting too much.
I've been having a hard time believing that I've been here for a week. Man, it flew! Sure, it feels like forever since my life was "normal", but it also feels like I've hardly been here at all.
It's sad thinking of what I would have been doing this week, and the next... I'm missing my last dance performance ever, which is next weekend.
But I've accepted that this is what I'm going to be doing, and I'm moving on.
Monday, June 1, 2009
You Can't Have My Vitals
"I'm just here to take your vitals" --Cheryl (the night nurse)
"I like them. You can't have them" --Me
Erek (one of my brothers, for those of you who don't know) and I were just watching Wall-E, until the silly hospital TV/movie/internet/other device stopped working (well, it still worked, it's just that it was kind of in slow motion, and was really hard to understand). So now Erek is downloading it, and it's got 14 minutes left (oh, now it has 15 minutes left. Time works strangely in hospitals, as I've mentioned before. :P ).
Yesterday and today have been pretty laid back. No hauling off to get poked under sedation, no big doctor parties in my room with question-and-answer sessions. Chemo started Friday, but it wasn't anything big and mean and un-comfy. But it DID kill cancer cells! I've been getting that stuff since then (three days, I guess). The first day of the next "phase" is tomorrow. That phase is 4 weeks long, called "Induction". It's when the stuff with more side affects starts. But at least the first time I'm given that is around 9 PM tomorrow, which they said is usually best for people.
I finally went out to the "play deck" yesterday, with dad, mom, and Erek. While mom ate lunch, the guys played basketball, which was quite fun to watch. I tried shooting a few hoops, but my port cuts hadn't quite healed, and it didn't feel very good. It was just really nice to be outside, partly in the sun, with a nice breeze.
Kara came out onto the deck and we actually got to hang out, which was awesome. She brought tons of movies, which I'm slowly working my way through (ok, I've only watched one so far (The Corpse Bride), but I'll get there eventually).
I found out that I can play both Foosball and Air Hockey. So Erek and I played each of those a couple of times. I discovered that playing Air Hockey with my right hand (I'm right handed) was painful, but that I could actually play better with my left hand all around. So that was fun, and I finally beat dad too. :)
The Womaks visited today, which was awesome. We all chatted for a while, and took pictures with Winnifred.
I slept until around 2 PM today, which was wonderful. It's not like I got tons of sleep, though (and I didn't stay up very late). Another discovery I made is that I wake up when the door opens and the nurse comes in. And that is NOT very loud. So I got woken up a lot (not at all her fault), and had to go to the bathroom a LOT (continuous IV fluids does that).
I took a shower today, the second one since I got here. It was a bit of an operation, covering up the IV equipment. The nurse (Cheryl) unplugged me from Winnifred, cut open a medium sized plastic bag (which was red, and said "Biohazard" on it), and taped it over the port, bandage, and tubes. We laughed at how I was a biohazard. It feels so good to be clean.
Raymi (my other brother) flew in from San Diego yesterday. But the problem is that he's got a cold, and can't visit yet. Sad! Apparently he hung out at the gaming store for a lot of today.
Someone has been playing pop music on the jukebox in the rec room for several hours. So I went on Pandora and blasted the speakers (heheh, not really) with Niall Vallely (an awesome concertina player).
Anyway, these are just some random tidbits, since I don't have any big exciting events to write about. :)
"I like them. You can't have them" --Me
Erek (one of my brothers, for those of you who don't know) and I were just watching Wall-E, until the silly hospital TV/movie/internet/other device stopped working (well, it still worked, it's just that it was kind of in slow motion, and was really hard to understand). So now Erek is downloading it, and it's got 14 minutes left (oh, now it has 15 minutes left. Time works strangely in hospitals, as I've mentioned before. :P ).
Yesterday and today have been pretty laid back. No hauling off to get poked under sedation, no big doctor parties in my room with question-and-answer sessions. Chemo started Friday, but it wasn't anything big and mean and un-comfy. But it DID kill cancer cells! I've been getting that stuff since then (three days, I guess). The first day of the next "phase" is tomorrow. That phase is 4 weeks long, called "Induction". It's when the stuff with more side affects starts. But at least the first time I'm given that is around 9 PM tomorrow, which they said is usually best for people.
I finally went out to the "play deck" yesterday, with dad, mom, and Erek. While mom ate lunch, the guys played basketball, which was quite fun to watch. I tried shooting a few hoops, but my port cuts hadn't quite healed, and it didn't feel very good. It was just really nice to be outside, partly in the sun, with a nice breeze.
Kara came out onto the deck and we actually got to hang out, which was awesome. She brought tons of movies, which I'm slowly working my way through (ok, I've only watched one so far (The Corpse Bride), but I'll get there eventually).
I found out that I can play both Foosball and Air Hockey. So Erek and I played each of those a couple of times. I discovered that playing Air Hockey with my right hand (I'm right handed) was painful, but that I could actually play better with my left hand all around. So that was fun, and I finally beat dad too. :)
The Womaks visited today, which was awesome. We all chatted for a while, and took pictures with Winnifred.
I slept until around 2 PM today, which was wonderful. It's not like I got tons of sleep, though (and I didn't stay up very late). Another discovery I made is that I wake up when the door opens and the nurse comes in. And that is NOT very loud. So I got woken up a lot (not at all her fault), and had to go to the bathroom a LOT (continuous IV fluids does that).
I took a shower today, the second one since I got here. It was a bit of an operation, covering up the IV equipment. The nurse (Cheryl) unplugged me from Winnifred, cut open a medium sized plastic bag (which was red, and said "Biohazard" on it), and taped it over the port, bandage, and tubes. We laughed at how I was a biohazard. It feels so good to be clean.
Raymi (my other brother) flew in from San Diego yesterday. But the problem is that he's got a cold, and can't visit yet. Sad! Apparently he hung out at the gaming store for a lot of today.
Someone has been playing pop music on the jukebox in the rec room for several hours. So I went on Pandora and blasted the speakers (heheh, not really) with Niall Vallely (an awesome concertina player).
Anyway, these are just some random tidbits, since I don't have any big exciting events to write about. :)
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