Was a little sick today. Mom came to sit with me while Patrick went to work for the day.
I have a grant due tomorrow night for school so I have to work on that now.
Wednesday, February 29, 2012
Day 22
We didn't have to go to the hospital today! We had the at-home infusion pump, which was a bit hard to remember how to work, but was way less obnoxious and time consuming than getting to the hospital and dealing with people and traffic and what. Probably less germy too.
Mom came over and brought pot roast for dinner and then Dad walked over from work and had dinner with us. It was tasty.
Mom came over and brought pot roast for dinner and then Dad walked over from work and had dinner with us. It was tasty.
Monday, February 27, 2012
Day 21
It doesn't seem like it's been three weeks since the transplant, but it also seems like it's been way longer in some ways. Probably mainly because when you're not going anywhere or doing anything, the days all run together.
Dr. Delima came to visit me in the ATC and told me I was doing well and he was proud of me, and it means I get to stay at home and get my fluids through the home pump, so I don't have to go back to the hospital until Thursday! It's exciting.
Dr. Delima came to visit me in the ATC and told me I was doing well and he was proud of me, and it means I get to stay at home and get my fluids through the home pump, so I don't have to go back to the hospital until Thursday! It's exciting.
Sunday, February 26, 2012
Day 20
Sundays at the hospital are really empty. They shut down all the escalators and nearly everything is closed and dark. Just the transfusion centers and labs for people who need daily monitoring or are getting chemo are open.
We watched a bunch of animal planet this morning while I was getting my fluids/magnesium in the ATC because if you try watching tv before 8 am, a surprising number of channels are still playing infomercials, whereas animal planet was showing "dogs 101" and just giving information about random breeds of dog. Which then made Patrick look at what dogs the SPCA has up for adoption and really just want to get one, though we don't really have a good setup for a pet in our current place and pets are on my no-no list right now because they could bring germs.
Patrick's parents came down to visit and brought down dinner (chicken and dumplings for easy chewing and lots of protein) and his mom sat with me for a bit while Patrick went to Costco. Sadly they didn't have any of the frozen crepes that we got before I went in, because I think I could have eaten a bunch of those and gained back some weight faster. I'm technically only down about 5 pounds, but I can tell that a good chunk of that is muscle/fat from how my skin fits my arms and legs now. If I bend them the right way I look sort of wrinkly and elephantish, which is a strange thing to feel.
We watched a bunch of animal planet this morning while I was getting my fluids/magnesium in the ATC because if you try watching tv before 8 am, a surprising number of channels are still playing infomercials, whereas animal planet was showing "dogs 101" and just giving information about random breeds of dog. Which then made Patrick look at what dogs the SPCA has up for adoption and really just want to get one, though we don't really have a good setup for a pet in our current place and pets are on my no-no list right now because they could bring germs.
Patrick's parents came down to visit and brought down dinner (chicken and dumplings for easy chewing and lots of protein) and his mom sat with me for a bit while Patrick went to Costco. Sadly they didn't have any of the frozen crepes that we got before I went in, because I think I could have eaten a bunch of those and gained back some weight faster. I'm technically only down about 5 pounds, but I can tell that a good chunk of that is muscle/fat from how my skin fits my arms and legs now. If I bend them the right way I look sort of wrinkly and elephantish, which is a strange thing to feel.
Saturday, February 25, 2012
Day 19
Today we had a super early appointment which made us very tired (though Patrick more than me, since I slept through most of my infusion and he didn't) but we were home and done with the hospital by about 11:30.
Dad came and sat with me for the afternoon while Patrick went out to his parents' to plug our numbers into Turbo Tax. Brett was home from UT for the weekend and he swung out for a visit for a bit before he went out to dinner with Emily. It's kind of annoying having to be babysat but it does mean that I get to see people more often.
Itching much better today.
Dad came and sat with me for the afternoon while Patrick went out to his parents' to plug our numbers into Turbo Tax. Brett was home from UT for the weekend and he swung out for a visit for a bit before he went out to dinner with Emily. It's kind of annoying having to be babysat but it does mean that I get to see people more often.
Itching much better today.
Day 18
Itching is better, but it kept me up all night so I was super sleepy and napped a lot all day randomly when I could get some sleep. So after my blood draw in the morning I slept until lunch, then went to get my infusion and napped a bit in the waiting room.
The APN and pharmacist came to see me and make sure everything was fine. Since the only complaint I had was that I was itchy, and I didn't have a rash, they just told me to look for problems and tell the nurses when I came in if anything happened over the weekend.
My platelets are above 50 today but they're going to wait for a couple of days to see what they do before I restart the shots for the blood clot.
The APN and pharmacist came to see me and make sure everything was fine. Since the only complaint I had was that I was itchy, and I didn't have a rash, they just told me to look for problems and tell the nurses when I came in if anything happened over the weekend.
My platelets are above 50 today but they're going to wait for a couple of days to see what they do before I restart the shots for the blood clot.
Thursday, February 23, 2012
Day 17
I'm at home! And I'm suddenly very itchy. I don't have any rashes or anything, but my arms and back are super itchy and it's hard to not scratch/rub at it. Hopefully I'll go to sleep and wake up in the morning and everything'll be fine.
I've been able to eat way more today - I think it's just easier to eat at home than in the hospital, even when I had food brought in from outside.
Going to the ATC tomorrow to keep getting fluids/antibiotics/etc. Hope everything keeps going well.
ITCHY.
I've been able to eat way more today - I think it's just easier to eat at home than in the hospital, even when I had food brought in from outside.
Going to the ATC tomorrow to keep getting fluids/antibiotics/etc. Hope everything keeps going well.
ITCHY.
Wednesday, February 22, 2012
Day 16
They started me on the pill tacro tonight because I'm scheduled to go home tomorrow. I got a visit from the pharmacist to talk about what drugs I have at home, though I'm not sure why, because the doctors haven't decided what drugs they're going to send me home with yet. He's coming back tomorrow with my actual prescriptions/medicines.
My night nurse yesterday told me she was really glad I was getting to go home because she was really worried when I had my fever last week that it wouldn't go well. I guess they were maybe more worried than they let on, but I'm glad my infection passed and I'm looking better now. She told me she has a daughter that's my age, so maybe she was just thinking about her own daughter and how she wouldn't want her to have a 103 degree fever.
She also told me that I don't complain enough and so that's how she knew that I was really sick when I had the fever because I was complainy and unhappy.
White count is 5.5 today! So, exciting = me going home and me having cells.
My night nurse yesterday told me she was really glad I was getting to go home because she was really worried when I had my fever last week that it wouldn't go well. I guess they were maybe more worried than they let on, but I'm glad my infection passed and I'm looking better now. She told me she has a daughter that's my age, so maybe she was just thinking about her own daughter and how she wouldn't want her to have a 103 degree fever.
She also told me that I don't complain enough and so that's how she knew that I was really sick when I had the fever because I was complainy and unhappy.
White count is 5.5 today! So, exciting = me going home and me having cells.
Day 15
Today we were awoken by guys cleaning our windows outside. They were on little swings dangling from the top of the building and held themselves still with giant suction cups. So we were awoken by "thud! squeak! thud! squeak!" for the suction cups and the squeegees. I was not amused.
The book volunteers came by today and gave me a free book to read and take home. I got a Nicholas Sparks book I hadn't read yet and some YA novel about summer romance, which I expect to be very stupid but probably a good waste of an afternoon.
They lifted the required contact isolation today since my white cells are up to 2.2, though I told them to leave the sign on the door for the volunteers, as some of them don't bother to do things like wash their hands. Or not go into sick people's rooms if they're sneezing.
The book volunteers came by today and gave me a free book to read and take home. I got a Nicholas Sparks book I hadn't read yet and some YA novel about summer romance, which I expect to be very stupid but probably a good waste of an afternoon.
They lifted the required contact isolation today since my white cells are up to 2.2, though I told them to leave the sign on the door for the volunteers, as some of them don't bother to do things like wash their hands. Or not go into sick people's rooms if they're sneezing.
Monday, February 20, 2012
Day 14
Today was full of napping. My platelets were high enough that I don't need a transfusion today, which was happy.
The doctor thinks I might be able to go home on Thursday, which is exciting. White count is up to 1.3, so slowly but surely going up. I want it to suddenly be like, 5, though I don't think it will be.
The doctor thinks I might be able to go home on Thursday, which is exciting. White count is up to 1.3, so slowly but surely going up. I want it to suddenly be like, 5, though I don't think it will be.
Sunday, February 19, 2012
Day 13
Did a lot of sleeping this morning since I went to bed so late last night and couldn't sleep well. The benadryl before the platelet transfusion helped. I'd like my platelets to come back up so I can stop having transfusions of them so often. I've had one almost every day for a week.
Lauren and Laura came to visit this afternoon, which was fun because I haven't gotten to see many people in a while. Apparently my room's gotten harder to get to since I came in because they're doing work on the floors and have random bits of hallway closed up.
I've eaten real food today and not had problems, so hopefully people will stop bugging me to eat, though I don't think they will. I know I should be eating more, but it's really hard to eat when your stomach thinks it's full already.
My white count is 1 today, so working its way into the right order of magnitude for me being healthy. Hopefully it means the infection (if I had one) is gone and that I'll be able to go home soon.
Lauren and Laura came to visit this afternoon, which was fun because I haven't gotten to see many people in a while. Apparently my room's gotten harder to get to since I came in because they're doing work on the floors and have random bits of hallway closed up.
I've eaten real food today and not had problems, so hopefully people will stop bugging me to eat, though I don't think they will. I know I should be eating more, but it's really hard to eat when your stomach thinks it's full already.
My white count is 1 today, so working its way into the right order of magnitude for me being healthy. Hopefully it means the infection (if I had one) is gone and that I'll be able to go home soon.
Day 12
Today's Patrick's birthday, so the moms got together and planned a surprise birthday celebration with our families here at the hospital. He wasn't expecting it, so I think it was fun.
Dad sat with me during the day and we determined that there's nothing on tv on Saturdays at the hospital. Last week we watched the Top Shot marathon, but this week the marathon on History Channel was all Hitler, which I didn't want to watch.
Still no fever.
Dad sat with me during the day and we determined that there's nothing on tv on Saturdays at the hospital. Last week we watched the Top Shot marathon, but this week the marathon on History Channel was all Hitler, which I didn't want to watch.
Still no fever.
Friday, February 17, 2012
Day 11
Today was one of my better days in probably the past week - didn't feel like being sick, was well-rested after sleeping in this morning, and my face is now only half swollen. I ate a lot better today, too, even if I haven't really been eating full meals. They ask me every morning (generally while I'm still rather groggy) what I ate the day before, and I always feel like I'm not telling them enough, though sometimes I forget things and they will remind me because they can see the empty milk carton or whatever on the room service tray.
Today was two cartons of milk, a protein shake, a cup of cheerios, half a cup of soup, and some sugar snap peas. Which sounds like I'm starving myself, but all the medicine has made me have to force myself to eat because I'm rarely ever even hungry and usually food seems unpleasant.
Yesterday, I forgot to mention that some people from child psychiatrics came to see me and make sure that I was doing ok and didn't need to talk to anyone. It was nice and good, but they definitely came in while my nurse was in the room messing with my lines and poking me and I wasn't really paying attention to them much. Also they didn't seem to know when my transplant was going to be, because they mentioned me having someone to talk to before it happened. I think they were students and maybe I got lost in the shuffle somewhere, as I am not really a kid and not really an adult. Luckily, I have family and friends and support and etc. and don't need their services, so I'm doing all right.
They're still giving me tons of antibiotics but at a slower rate, since I haven't had a fever in a while, which is nice, but it means when they don't time things right, I have tons of medicine running into me all at once and the iv pole won't have it. Today they had to temporarily add a second pump because the pumps can't handle more than 4 tubes at once, and I needed 5 - two for the tacro (anti-rejection drug), one for an antibiotic, one for my fluids/electrolytes, and one for the last dose of the mini-chemo. I'm down to fewer stuff now, but at one point this morning I had what seemed like twenty bags of stuff running into me all at once. I needed another platelet transfusion again today, bringing my total platelet transfusion count for this round up to 4, which seems higher than last time.
My white cell count is .2 today, double what it was yesterday, but still rather small. Go up, cells, go up!
Today was two cartons of milk, a protein shake, a cup of cheerios, half a cup of soup, and some sugar snap peas. Which sounds like I'm starving myself, but all the medicine has made me have to force myself to eat because I'm rarely ever even hungry and usually food seems unpleasant.
Yesterday, I forgot to mention that some people from child psychiatrics came to see me and make sure that I was doing ok and didn't need to talk to anyone. It was nice and good, but they definitely came in while my nurse was in the room messing with my lines and poking me and I wasn't really paying attention to them much. Also they didn't seem to know when my transplant was going to be, because they mentioned me having someone to talk to before it happened. I think they were students and maybe I got lost in the shuffle somewhere, as I am not really a kid and not really an adult. Luckily, I have family and friends and support and etc. and don't need their services, so I'm doing all right.
They're still giving me tons of antibiotics but at a slower rate, since I haven't had a fever in a while, which is nice, but it means when they don't time things right, I have tons of medicine running into me all at once and the iv pole won't have it. Today they had to temporarily add a second pump because the pumps can't handle more than 4 tubes at once, and I needed 5 - two for the tacro (anti-rejection drug), one for an antibiotic, one for my fluids/electrolytes, and one for the last dose of the mini-chemo. I'm down to fewer stuff now, but at one point this morning I had what seemed like twenty bags of stuff running into me all at once. I needed another platelet transfusion again today, bringing my total platelet transfusion count for this round up to 4, which seems higher than last time.
My white cell count is .2 today, double what it was yesterday, but still rather small. Go up, cells, go up!
Day 10
My fever finally started to go away today. It's probably going to be okay, but they still had to take a chest x-ray today to make sure I don't have pneumonia. They haven't mentioned anything about it to me yet, but I'm sure that if it DID look like I had pneumonia, they would have brought in a ton more drugs and such.
My hair is now pretty much completely gone - it went a lot faster than last time. Or maybe last time I'd just been slowly losing it over the course of 2-3 months and so I didn't notice it so suddenly. We've had to lint-roller off my pillows/bed like 3 times today and probably will need at least one more time. At one point this afternoon I was missing the hair at the front of my head and not the back so Patrick was teasing me about having the weirdest mullet ever. I got even with him by shedding everywhere and making him lint-roller it up.
The nurse overheard us talking about me losing my hair and kept telling me that I look beautiful. I'm not really worried about it, and I know that right now I look really weird. But I also know that it's temporary. Eventually my chipmunk swelling will go away and my mouth/cheeks will stop looking lopsided and that'll be fine. Hopefully it'll be soon, because it'll be easier to eat normally when that happens. My hair will (please!) grow back eventually and maybe in a more different color again.
I went walking for the first time in two days this evening and my calves were hurting the entire time like I'd exercised them TOO MUCH already. I wonder if they got a huge workout during the shivering?
My hair is now pretty much completely gone - it went a lot faster than last time. Or maybe last time I'd just been slowly losing it over the course of 2-3 months and so I didn't notice it so suddenly. We've had to lint-roller off my pillows/bed like 3 times today and probably will need at least one more time. At one point this afternoon I was missing the hair at the front of my head and not the back so Patrick was teasing me about having the weirdest mullet ever. I got even with him by shedding everywhere and making him lint-roller it up.
The nurse overheard us talking about me losing my hair and kept telling me that I look beautiful. I'm not really worried about it, and I know that right now I look really weird. But I also know that it's temporary. Eventually my chipmunk swelling will go away and my mouth/cheeks will stop looking lopsided and that'll be fine. Hopefully it'll be soon, because it'll be easier to eat normally when that happens. My hair will (please!) grow back eventually and maybe in a more different color again.
I went walking for the first time in two days this evening and my calves were hurting the entire time like I'd exercised them TOO MUCH already. I wonder if they got a huge workout during the shivering?
Wednesday, February 15, 2012
Day 9
Today was spent shivering uncontrollably because with the high fever came chills. Apparently the doctors aren't too worried though, which is good. My doctor came and visited me today and he's happy with how I'm doing.
Day 8
I finally got the fever today. Around midnight they took my vital signs and I had a fever of 102 and so they started pumping me full of Tylenol and antibiotics and took a bunch of blood cultures to check me for infections.
My hair started falling out in huge clumps. I don't really want to lose it again.
Today was two bags of blood and a bag of platelets. I can't wait for my counts to come back.
My hair started falling out in huge clumps. I don't really want to lose it again.
Today was two bags of blood and a bag of platelets. I can't wait for my counts to come back.
Monday, February 13, 2012
Day 7
I'm apparently astonishing the doctors because I haven't run a fever yet. So hooray? My mouth is all swollen up and I feel like a chipmunk. Or maybe what people look/feel like when they have their wisdom teeth out - I wouldn't know, I never had mine removed.
I went through all day without really getting sick, which is exciting. I guess all the throwing up I did in the middle of the night last night fulfilled today's quota. Side note - if all you have in your stomach is a cheese stick and fruit punch gatorade, it will look like you're throwing up bloody teeth.
I did some work today and am kind of worried after hearing some of the things that are happening at school that I'll get back and not recognize anything. Or that I just won't be allowed back at all. Nothing I can do about it really.
I went through all day without really getting sick, which is exciting. I guess all the throwing up I did in the middle of the night last night fulfilled today's quota. Side note - if all you have in your stomach is a cheese stick and fruit punch gatorade, it will look like you're throwing up bloody teeth.
I did some work today and am kind of worried after hearing some of the things that are happening at school that I'll get back and not recognize anything. Or that I just won't be allowed back at all. Nothing I can do about it really.
Sunday, February 12, 2012
Day 6
Patrick's dad came and sat with me for the day today and I feel kind of bad because not too long after he came, they gave me a platelet transfusion with the Benadryl and then I slept for like 5 hours.
I have a funny bumpy sore sort of on my gums between my back molars, which I think is why it hurts to try and open my mouth. I've been eating lots of liquid foods because of it. I sent Mom to find me the most high-calorie chicken broth the store had so I could drink my calories, and apparently there is no such thing as high-calorie chicken broth. Everything was either 99% or 100% fat free. So we're going to buy a giant pack of ramen and just use the flavor packets in water because they aren't trying to be health-conscious.
My white cell count today was 0, so hopefully it'll start going up soon! The doctor seems to think that my mouth won't feel better/start to heal until my white count recovers.
I have a funny bumpy sore sort of on my gums between my back molars, which I think is why it hurts to try and open my mouth. I've been eating lots of liquid foods because of it. I sent Mom to find me the most high-calorie chicken broth the store had so I could drink my calories, and apparently there is no such thing as high-calorie chicken broth. Everything was either 99% or 100% fat free. So we're going to buy a giant pack of ramen and just use the flavor packets in water because they aren't trying to be health-conscious.
My white cell count today was 0, so hopefully it'll start going up soon! The doctor seems to think that my mouth won't feel better/start to heal until my white count recovers.
Day 5
Did pretty well today. Watched almost the entire last season of Top Shot with Dad. History Channel had a marathon on it since the new season's starting up this week. I'll have Tuesdays full of fun shows now, since Top Shot and Top Gear are on back to back, and Tosh.0 and Key and Peele are also on on Tuesdays too.
Got a balloon from a nurse today. Someone had apparently brought in a bunch of balloons for the patients and when Dad and I were walking she told me to take one because they were floating away. So I have a smiley face floating around my iv pole now.
Got a balloon from a nurse today. Someone had apparently brought in a bunch of balloons for the patients and when Dad and I were walking she told me to take one because they were floating away. So I have a smiley face floating around my iv pole now.
Friday, February 10, 2012
Day 4
My mouth started hurting today. It's not in the back of my throat this time, yet, which means I can still swallow just fine, but it is hard to open my mouth wide enough to get much in it bigger than cheerios or spoonfuls of soup. I may go onto some sort of all-liquids diet for a while because of this.
My counts have started bottoming out now - platelets low enough to stop my blood thinner shots, and white cells basically gone.
My counts have started bottoming out now - platelets low enough to stop my blood thinner shots, and white cells basically gone.
Day 3
Got another dose of the post-transplant chemo today. They keep telling me it shouldn't make me sick because it's such a small dose, but I still get sick from something anyways, so I'm not sure i believe them.
Spent most of the day sleeping because of it.
The arms physical therapist came to visit me this morning early and gave me exercises to do with a resistance band which is basically a giant strip of balloon. I'm afraid I'm going to pull it the wrong way and slap myself in the face.
Spent most of the day sleeping because of it.
The arms physical therapist came to visit me this morning early and gave me exercises to do with a resistance band which is basically a giant strip of balloon. I'm afraid I'm going to pull it the wrong way and slap myself in the face.
Wednesday, February 8, 2012
Day 2
I felt a lot better for most of today. Though I do have a new doctor for this week and she came into my room singing a song at like 9 am after I was trying to finally get some sleep and told me that once I start looking forward to her songs, it's time for me to go home. I know right now I will never be looking forward to her songs, and I'm ready and willing to go home today, even though I know I won't be leaving the hospital for a few more weeks.
Discovered the Face Off on Syfy today, and it's really quite fun to watch. Also impressive to see what counts as "bad" or "untalented" in stage makeup.
My counts are starting to go low now so I'm in the danger zone in terms of infection for the next couple of weeks. Hopefully they'll go up faster now that I'm 100% donor, but I don't really know if that's a thing or not.
Discovered the Face Off on Syfy today, and it's really quite fun to watch. Also impressive to see what counts as "bad" or "untalented" in stage makeup.
My counts are starting to go low now so I'm in the danger zone in terms of infection for the next couple of weeks. Hopefully they'll go up faster now that I'm 100% donor, but I don't really know if that's a thing or not.
Day 1
I was pretty sick and blah all day yesterday. I did get a visit from a physical therapist who told me what I need to do to keep myself healthy while bedridden. Basically I'm supposed to take walks in circles and sit up when I can, which I already knew. She wanted me to go on a 6-minute walk with her but as I was not certain I could manage that without throwing up on her, she had to leave un-walked-with.
They gave me one of the mini-doses of the after-transplant chemo last night which made me pretty unhappy as well, and it took me a really long time to get it because one of the doctors forgot to sign the orders.
They gave me one of the mini-doses of the after-transplant chemo last night which made me pretty unhappy as well, and it took me a really long time to get it because one of the doctors forgot to sign the orders.
Monday, February 6, 2012
Transplant Day: Day 0
Transplant was today. Apparently my room smells funny from the preservatives they used to keep the cells healthy, but I can't actually tell. Patrick and my nurse both commented on it. I guess since the cells are inside me now I'm immune.
Hopefully my stomach will calm down and I'll be able to eat more within the next few weeks and things'll go better than they did last time.
Hopefully my stomach will calm down and I'll be able to eat more within the next few weeks and things'll go better than they did last time.
Day -1
Today was my "day of rest" between the chemo and the transplant, but I guess my stomach didn't get the message because I felt worse than I had for the days when I was actively getting chemo, and because of that I couldn't nap like I wanted to. I'm getting so tired because I can't sleep in the hospital very well. I want my own bed at home.
They moved me into a new room across the hall that they uber-sterilized, including waxing the floors and putting in new air vents, in preparation for the transplant. I am glad they take this seriously, but now my room looks out on the St. Luke's helipad and I am finding myself awoken at all hours of the night when a life-flight comes in.
Transplant is tomorrow and I'm kind of scared even though it went well last time. What if something goes wrong this time around?
They moved me into a new room across the hall that they uber-sterilized, including waxing the floors and putting in new air vents, in preparation for the transplant. I am glad they take this seriously, but now my room looks out on the St. Luke's helipad and I am finding myself awoken at all hours of the night when a life-flight comes in.
Transplant is tomorrow and I'm kind of scared even though it went well last time. What if something goes wrong this time around?
Saturday, February 4, 2012
Day -2
Learned today that my stomach doesn't like me on steroids. There goes my (not at all) lifelong dream of becoming a professional bodybuilder, I suppose.
I should really try to write these at normal times (like in the afternoon) when I'm not all doped up on drugs. I feel like I might then have something meaningful to say, because just mentioning what I've done all day (watch a bunch of Mythbusters and Tosh.0, play words with friends, and nap) is not really that thrilling. Also I'd think before I spoke/typed and maybe be less of a nuisance.
They started me back up on the anti-rejection drugs today so I've got three tubes hanging onto me instead of just the saline one. I'm not really sure why they can't connect to each other like the other drugs on my six-prong iv manifold, but the tacro bags have giant neon green stickers on them that say "TACRO" and "non-pvc tubing required." It seems weird that something would interact with pvc and become a not-functional drug. Or also that they found this out somehow. Or that they can't just give it to me in pill form, which definitely has nothing to do with pvc.
It does mean that one of the tubes is much more flexible than the others and I'm kind of afraid that I'll bend it funny and it'll just start spurting everywhere. Probably because I have this fear it won't happen because I'm paying super close attention to everything line-related. The nurses are all in awe over the pacifier-clip Mom got me to keep my lines secured so hopefully I don't have another stitches problem like during the last transplant, which I think is amusing because it's the pedi floor - and surely they have to do lots of securing things to make sure the kids don't pull/yank/trip and fall and have their IVs come out? One of the kids in the playroom was running around today and his mom was trying really hard to keep up with him pushing his pole so he wasn't pulling it with the IV in his arm.
I should really try to write these at normal times (like in the afternoon) when I'm not all doped up on drugs. I feel like I might then have something meaningful to say, because just mentioning what I've done all day (watch a bunch of Mythbusters and Tosh.0, play words with friends, and nap) is not really that thrilling. Also I'd think before I spoke/typed and maybe be less of a nuisance.
They started me back up on the anti-rejection drugs today so I've got three tubes hanging onto me instead of just the saline one. I'm not really sure why they can't connect to each other like the other drugs on my six-prong iv manifold, but the tacro bags have giant neon green stickers on them that say "TACRO" and "non-pvc tubing required." It seems weird that something would interact with pvc and become a not-functional drug. Or also that they found this out somehow. Or that they can't just give it to me in pill form, which definitely has nothing to do with pvc.
It does mean that one of the tubes is much more flexible than the others and I'm kind of afraid that I'll bend it funny and it'll just start spurting everywhere. Probably because I have this fear it won't happen because I'm paying super close attention to everything line-related. The nurses are all in awe over the pacifier-clip Mom got me to keep my lines secured so hopefully I don't have another stitches problem like during the last transplant, which I think is amusing because it's the pedi floor - and surely they have to do lots of securing things to make sure the kids don't pull/yank/trip and fall and have their IVs come out? One of the kids in the playroom was running around today and his mom was trying really hard to keep up with him pushing his pole so he wasn't pulling it with the IV in his arm.
Friday, February 3, 2012
Day -3
The long chemo started today and it basically ended up with me being REALLY COLD because all I did all morning was eat ice and popsicles for like 3 hours to try and avoid mouth sores. I hope I will actually avoid them because then I'll be able to eat things next week/the week after (I don't really remember when the worst of it was last time).
I'm messing up my sleep schedule something fierce being here. I take naps during the day and then once it comes to being bedtime, I can't actually get to sleep, which makes me stay up super late and then I'm tired and need to take naps and everything starts all over.
One of the other rooms on the floor has a giant sign on the door telling doctors/residents to take off their lab coats before entering - apparently the kid inside is afraid of doctors but only when they have on their white coat and they're easily identifiable as doctors. I'm actually kind of surprised that this is the first time I've seen something like that.
I got sick again tonight and I kind of wonder if I'm going to just start getting worse and worse for the next few weeks before I get better. Hopefully it's just that I've been trying to eat like a normal person and not like someone getting chemo and my stomach is going "crepes from the tea room, really? That's so interesting and complicated! Where are my cheerios??"
I'm messing up my sleep schedule something fierce being here. I take naps during the day and then once it comes to being bedtime, I can't actually get to sleep, which makes me stay up super late and then I'm tired and need to take naps and everything starts all over.
One of the other rooms on the floor has a giant sign on the door telling doctors/residents to take off their lab coats before entering - apparently the kid inside is afraid of doctors but only when they have on their white coat and they're easily identifiable as doctors. I'm actually kind of surprised that this is the first time I've seen something like that.
I got sick again tonight and I kind of wonder if I'm going to just start getting worse and worse for the next few weeks before I get better. Hopefully it's just that I've been trying to eat like a normal person and not like someone getting chemo and my stomach is going "crepes from the tea room, really? That's so interesting and complicated! Where are my cheerios??"
Day -4
Today while I was skyping with Kim the activities person asked me if I'd like to set up a meeting with the monster truck drivers from Monster Jam, who were coming to visit with the pedi patients on Friday morning. I decided to let the 8 year old boy down the hall to me get extra time with them, as I have no interest in monster trucks, and honestly, I'm probably older than some of the drivers. Not like you can really have a lifelong career doing that - I bet it's like some other sports and once you hit 30 you're pretty much on the way to retirement.
My hospital wristband has three bar codes on it - one QR code and two normal codes. I wonder why/what they're for, as they haven't scanned any of them yet.
One of my facebook acquaintances posted recently about how her dog has cancer and they don't know what they're going to do or how they'll deal with it. I'm not sure how I feel about it. I know a lot of people are super attached to their pets, and since I don't really remember having anything more complicated than a fish, I never had that myself. But I also kind of feel like she has a toddler and she should be glad it's not her kid that's sick. Every once in a while we'll hear one of the toddlers here screaming and screaming because they're being poked and stuck and in pain and they have no idea what's happening to them. Also, and perhaps I'm super cruel for saying this, she can get a new dog if this one passes. No matter how healthy a dog is, you're going to see it die of sickness or old age because dogs don't live to be like, 50. But I might if my treatments work, and I'd really love to make it, without feeling like I'm less important than an aging family pet.
My hospital wristband has three bar codes on it - one QR code and two normal codes. I wonder why/what they're for, as they haven't scanned any of them yet.
One of my facebook acquaintances posted recently about how her dog has cancer and they don't know what they're going to do or how they'll deal with it. I'm not sure how I feel about it. I know a lot of people are super attached to their pets, and since I don't really remember having anything more complicated than a fish, I never had that myself. But I also kind of feel like she has a toddler and she should be glad it's not her kid that's sick. Every once in a while we'll hear one of the toddlers here screaming and screaming because they're being poked and stuck and in pain and they have no idea what's happening to them. Also, and perhaps I'm super cruel for saying this, she can get a new dog if this one passes. No matter how healthy a dog is, you're going to see it die of sickness or old age because dogs don't live to be like, 50. But I might if my treatments work, and I'd really love to make it, without feeling like I'm less important than an aging family pet.
Thursday, February 2, 2012
Day -5
I'm actually writing this a day late because around 8 pm last night I started getting a headache and tried to relax it away, but couldn't. And by the time I tried to get something for it, they had to call the doctors and discuss what I could be given in terms of pain relief that wouldn't mess with my chemo, and it took two hours for them to decide that a dose of Tylenol would be ok. By that time it'd moved into migrane-zone, somewhere that I'd been able to avoid since before I got sick, and it meant that it had become one of those headaches where my body decides that whatever I ate for my last meal was the issue and I had to throw up.
Which caused all sorts of issues because the nurses were all like "oh, you're nauseous, we need to give you some drugs to stop that since it's obviously from the chemo!" No, it's because it takes you two hours to give someone Tylenol, but whatever.
The pediatric activities coordinator lady doesn't know what to do with me. She keeps coming by to ask if I want any games or movies, or bringing me art projects to do. I think the fact that I told her I was technically "at work" and working from the hospital threw her. Possibly because I'm the only patient in pediatrics that has a job at all, much less a job that they're actively performing. Patrick and I are pretty technologically savvy, and we've got netflix running on his tablet and the iPad I got from work, I've got my netbook for work and for Examiner/CBS writing, and lots of other various things and gadgets to occupy me.
Which caused all sorts of issues because the nurses were all like "oh, you're nauseous, we need to give you some drugs to stop that since it's obviously from the chemo!" No, it's because it takes you two hours to give someone Tylenol, but whatever.
The pediatric activities coordinator lady doesn't know what to do with me. She keeps coming by to ask if I want any games or movies, or bringing me art projects to do. I think the fact that I told her I was technically "at work" and working from the hospital threw her. Possibly because I'm the only patient in pediatrics that has a job at all, much less a job that they're actively performing. Patrick and I are pretty technologically savvy, and we've got netflix running on his tablet and the iPad I got from work, I've got my netbook for work and for Examiner/CBS writing, and lots of other various things and gadgets to occupy me.
Subscribe to:
Posts (Atom)