SOOOOOOOOOO......good news! well I haven't found out what percentage my blood is of travy's cells BUT the doctors told me that the mutated gene that was the start of the leukemia was no longer in my marrow! so! hopefully once my body has been completely taken over by travis I will be 100% in the clear for being cancer-free :D yay! cause believe me...i'd rather NOT go through this again.
I had a WONDERFUL day yesterday! My first real outing since getting out of the hospital :) Cassidy took me to the Renaissance Festival! I believe it is the biggest festival in the US but you can google it yourself and check on that if you think I'm wrong. It was HUGE!! there were so many stages and houses and shops and people! A lot of people were in costume and since it was All Hallows Eve themed there were both medieval costumes and halloween costumes walking about. It was very fun! I ate part of a turkey leg, iced cream from germany and funnel cake (i couldn't resist). It got me and cassidy talking about one day getting real costumes and acting the part...some people go and remain in character the whole time they are there. I think it would be a lot of fun to wear those beautiful gowns and corsets and have BIG hair. Cassidy, of course, would be my knight :) or gladiator...we haven't decided yet :) depends on how comfortable he is walking around in just a piece of cloth and yelling a lot in anger at being a slave (my slave :D). We saw a jousting show and a show of illusions. We also got to see a lady blow glass and make a beautiful glass vase. We walked around for 6 hours before I called it quits; my legs and feet were hurting! I can't believe cass does this everyday for 9 hours! I give him props for being able to be on his feet and not collapse at work...if it were me I'd end up sitting on a table..all day.
Tonight me and the neighbors are going to put some semi-scary (but mostly NOT scary) movies in theme for the holiday. Tomorrow we are going to Jan and Janet's to help pass out candy and hang out :) It going to suck not dressing up this year and going out and about but I'm probably not missing much.
well I hope you all have a safe and scary halloween! go trick or treating for me! :P I was hoping to dress up as Megamind (google it) since I'm bald but having no job and no money and no sewing skills makes it difficult to put together a costume. I hope to see pictures of good costumes! :) i love you all!
-sav
Sunday, October 30, 2011
Wednesday, October 26, 2011
Fluids anyone?
Oh the days are starting to get repetitive. Thankfully MDA has not only begun to lessen the amount of fluids I get at one point but they are only having me come into the hospital 3 times a week. That gives me 4 days at home to sit on my couch and...get fluids. Let's just say this was getting old for me the first WEEK they had me doing this. Today is my first day of getting a Liter of Magnesium sulfate instead of the oringinal liter and a half...for those who are wondering it's still a lot of liquid and it still takes about 3 hours to pump into me. argh.
Last weekend was a good weekend. Our good friend Terry came down from Utah to visit for the weekend; he treated me to a massage (it was more relaxing than anything beneficial for my muscles..but it was a nice change and it felt good to relax) and hung out with our neighbors Melissa and Daniel. Me and Cass carved pumpkins with Melissa, Daniel and some of their friends that live in our apartment complex. It was nice meeting new people and it was fun getting all the pumpkin out :) Cass did the carving while I held the paper that had the picture of what our jack-o-lantern was going to become...a cat with wings :D It came out pretty good actually (the cat was a little too skinny) and Cass was a perfectionist to make it look clean cut. It was super cool to look at at night with a candle in it but by a couple of days it had started to wilt :( It didn't even make it to halloween, the poor kitty. Afterwards we all spent time with mom and Terry and told stories and got to know each other a little bit more.
I exercised for the first time since the transplant the other day with Cassidy...I went on the treadmill and actually ran a little bit (and by a little bit I really do mean a little bit haha..my leg strength is definitely on the low side). It definitely felt good to move and I could tell my body liked it as well. I've been getting really tight in my upper back and shoulders from my lack of sustaining a good posture and not stabilizing like I should be...I've definitely started to get better though now that I have the energy to sit up and not slouch. I have an appointment today with a physcial therapist who will do an evaluation and give me a list of things to do at home to get my strength back....even though I know a lot of exercises to help me out I wanted to see a PT just to see what she'll tell me to do and get some experience of being the patient and not the PT. Also if they have a nice gym that I can work out in then it's another bonus for me to be there :D. We shall see how that goes!
I got the results from my bone marrow biopsy back. They were checking to see if there was any leukemic cells and (insert drum roll) it was all clear! So far so good on remaining in remission :) Hopefully travy's cells kick the leukemia cells' butts and I'll never have to do chemotherapy EVER again. It's going to be months before my body is back to normal after this last crazy dose of chemo they gave me. It killed my pigment cells in my skin making it look brown and now it's starting to come off, making me look all spotty and diseased....yuck. I also probably won't start getting my hair back until December or January. I wonder what color it will be and what it will look like when it comes back...what do you think? We can put some wagers down and make this interesting! :P
I should find out next week what percentage of Travy's cells are in my body vs. my cells. By 100 days (we are at 36) it should be 100% taken over by travy cells.
If you go to https://www.wepay.com/donate/158349 you can make a donation or visit my store at https://www.wepay.com/shop/savy_s_fight_like_a_girl_store and buy hand made items (perfect for the holidays); all the proceeds will go towards my medical bills tbat are slowly piling up. This whole not being able to work thing doesn't make it easy to pay them off. Any help will be GREATLY appreciated with love from me and my family. I already am in debt to you all for just taking the time to read my silly blogs. You all have done so much already...I hope you know that I am thankful to have your support and positive energy being sent my way.
I hope you all have a happy and safe halloween!
with love,
sav
Last weekend was a good weekend. Our good friend Terry came down from Utah to visit for the weekend; he treated me to a massage (it was more relaxing than anything beneficial for my muscles..but it was a nice change and it felt good to relax) and hung out with our neighbors Melissa and Daniel. Me and Cass carved pumpkins with Melissa, Daniel and some of their friends that live in our apartment complex. It was nice meeting new people and it was fun getting all the pumpkin out :) Cass did the carving while I held the paper that had the picture of what our jack-o-lantern was going to become...a cat with wings :D It came out pretty good actually (the cat was a little too skinny) and Cass was a perfectionist to make it look clean cut. It was super cool to look at at night with a candle in it but by a couple of days it had started to wilt :( It didn't even make it to halloween, the poor kitty. Afterwards we all spent time with mom and Terry and told stories and got to know each other a little bit more.
I exercised for the first time since the transplant the other day with Cassidy...I went on the treadmill and actually ran a little bit (and by a little bit I really do mean a little bit haha..my leg strength is definitely on the low side). It definitely felt good to move and I could tell my body liked it as well. I've been getting really tight in my upper back and shoulders from my lack of sustaining a good posture and not stabilizing like I should be...I've definitely started to get better though now that I have the energy to sit up and not slouch. I have an appointment today with a physcial therapist who will do an evaluation and give me a list of things to do at home to get my strength back....even though I know a lot of exercises to help me out I wanted to see a PT just to see what she'll tell me to do and get some experience of being the patient and not the PT. Also if they have a nice gym that I can work out in then it's another bonus for me to be there :D. We shall see how that goes!
I got the results from my bone marrow biopsy back. They were checking to see if there was any leukemic cells and (insert drum roll) it was all clear! So far so good on remaining in remission :) Hopefully travy's cells kick the leukemia cells' butts and I'll never have to do chemotherapy EVER again. It's going to be months before my body is back to normal after this last crazy dose of chemo they gave me. It killed my pigment cells in my skin making it look brown and now it's starting to come off, making me look all spotty and diseased....yuck. I also probably won't start getting my hair back until December or January. I wonder what color it will be and what it will look like when it comes back...what do you think? We can put some wagers down and make this interesting! :P
I should find out next week what percentage of Travy's cells are in my body vs. my cells. By 100 days (we are at 36) it should be 100% taken over by travy cells.
If you go to https://www.wepay.com/donate/158349 you can make a donation or visit my store at https://www.wepay.com/shop/savy_s_fight_like_a_girl_store and buy hand made items (perfect for the holidays); all the proceeds will go towards my medical bills tbat are slowly piling up. This whole not being able to work thing doesn't make it easy to pay them off. Any help will be GREATLY appreciated with love from me and my family. I already am in debt to you all for just taking the time to read my silly blogs. You all have done so much already...I hope you know that I am thankful to have your support and positive energy being sent my way.
I hope you all have a happy and safe halloween!
with love,
sav
Tuesday, October 18, 2011
Back in buisness
Sorry everyone for falling off the face of the earth for a while...
let's recap:
I got out of the hospital after being there for only 25 days total (who knew travy's stem cells were such over achievers?) on Friday the 7th. Though I was ready to be done with getting woken up throughout the night and being back at home, I was definitely not jumping out of bed that day. I was feeling low of energy and not in the best of moods considering I was leaving the hospital. I got home and for the next two days I pretty much didn't move from my spot on the couch. My mouth sores had gone away but I had no appetite and if I did eat anything I threw it right back up. So it wasn't easy coming home. Luckily my nausea didn't stay with me very long so keeping food down wasn't a problem anymore...eating it was. When I got chemotherapy it proceeded to wipe out all of my taste buds. If I showed you my tongue it would look very smooth...because I have no taste buds! So even though I could hold food down eating it was a whole other chore to do! First everything I ate tasted like cardboard. I stil didnt have much of an appetite so it was really easy for me to take a bite of food and say "all done". Next, everything just tasted horrible. No matter what I ate I just tasted sour disgusting food and after one bite I would say "all done". It sucked because my dad was here and he made all his delicious food that normally was really good but currently no bueno for my taste buds. So for days and days I was maybe eating 300 calories a day...not good :/ In the hospital I managed to keep my weight at a good 118 lbs. With the mouth sores the previous week preventing me from eating much and then my taste buds keeping me from eating I quickly dropped down to 110 lbs. My energy was low and soon my blood pressure started to drop off.
Once I was out of the hospital I was scheduled to go right back into the clinic the next week and do blood draws and 1.5L over 3 1/2 hours of magnesium sulfate. So lucky me, i get to leave the hospital just to come back and spend half my day here. We get to the clinic around 8 and I usually start my fluids around 9 or 10 am. I then lay in bed for the 3 1/2 hours and sleep, watch movies or...space out. I have done this everyday since being out of the hospital save for this past weekend where they let us take the fluids home and do them there. I need all of this fluid because the prograft drug I take is hard on the kidneys and decreases my magnesium a lot. I will need to do this for the majority of my 100 days while I am taking the prograft drug (tacrolimus). Hopefully I will only have to come into the hospital on mondays, wednesdays and fridays and have the rest of the days at home to do fluids...that would be much nicer to do!
So back to my blood pressure. The nurses always take my vitals every morning and since I've been out of the hospital I noticed that I am out of breath just standing up, let alone walking around. I get very lightheaded when I sit up and stand up but luckily I never got too dizzy and felt like falling. As I got my blood pressure taken I noticed that everyday it was going down....90/60...84/55...80/50...92/66...then 73/40. 73/40?!!? If you don't understand what that means a normal blood pressure is 120/80. 73/40 is NOWHERE near that AT ALL. I was surprised I was still walking around! (The nurse had to hold my arm and walk me back because they don't want me to "drop" as they say here) So that was most likely caused from not drinking a gallon of water a day. It is hard to be drinking water or the likes constantly all day. If I didn't get rid of my cancer yet I'll just drown it in fluids. I got prescribed blood pressure medicine (yay more medicine to take with the handful that I'm taking already) and it seems to be helping already. I hit the 100's yesterday!
This past weekend I started to eat more and get more of my appetite back. I think eating (or lack there of) really affected my blood pressure too...so I'm happy to be eating again. Things still taste a little weird but it's manageable. I am up to 114 lbs which was gained from eating sugary snack foods that I would normally never eat but I have to now to gain weight. Cassidy told me "just eat everything you tell me not to eat". Haha. It is really hard for me to do that! I don't know how people eat this stuff everyday! It's hard cause I don't snack a lot and eat only when I'm hungry or remember to eat...so I am trying to train myself to eat throughout the day. :\ gotta keep trying
anyways, I just wanted to let you all know that I'm still alive and doing well. otherthan the blood pressure I have been doing great with my recovery; no fevers, no rashes, no nausea! I will update more often now that I finally have some energy and motivation back in me. I hope you all are doing well and keep in touch!
-sav
let's recap:
I got out of the hospital after being there for only 25 days total (who knew travy's stem cells were such over achievers?) on Friday the 7th. Though I was ready to be done with getting woken up throughout the night and being back at home, I was definitely not jumping out of bed that day. I was feeling low of energy and not in the best of moods considering I was leaving the hospital. I got home and for the next two days I pretty much didn't move from my spot on the couch. My mouth sores had gone away but I had no appetite and if I did eat anything I threw it right back up. So it wasn't easy coming home. Luckily my nausea didn't stay with me very long so keeping food down wasn't a problem anymore...eating it was. When I got chemotherapy it proceeded to wipe out all of my taste buds. If I showed you my tongue it would look very smooth...because I have no taste buds! So even though I could hold food down eating it was a whole other chore to do! First everything I ate tasted like cardboard. I stil didnt have much of an appetite so it was really easy for me to take a bite of food and say "all done". Next, everything just tasted horrible. No matter what I ate I just tasted sour disgusting food and after one bite I would say "all done". It sucked because my dad was here and he made all his delicious food that normally was really good but currently no bueno for my taste buds. So for days and days I was maybe eating 300 calories a day...not good :/ In the hospital I managed to keep my weight at a good 118 lbs. With the mouth sores the previous week preventing me from eating much and then my taste buds keeping me from eating I quickly dropped down to 110 lbs. My energy was low and soon my blood pressure started to drop off.
Once I was out of the hospital I was scheduled to go right back into the clinic the next week and do blood draws and 1.5L over 3 1/2 hours of magnesium sulfate. So lucky me, i get to leave the hospital just to come back and spend half my day here. We get to the clinic around 8 and I usually start my fluids around 9 or 10 am. I then lay in bed for the 3 1/2 hours and sleep, watch movies or...space out. I have done this everyday since being out of the hospital save for this past weekend where they let us take the fluids home and do them there. I need all of this fluid because the prograft drug I take is hard on the kidneys and decreases my magnesium a lot. I will need to do this for the majority of my 100 days while I am taking the prograft drug (tacrolimus). Hopefully I will only have to come into the hospital on mondays, wednesdays and fridays and have the rest of the days at home to do fluids...that would be much nicer to do!
So back to my blood pressure. The nurses always take my vitals every morning and since I've been out of the hospital I noticed that I am out of breath just standing up, let alone walking around. I get very lightheaded when I sit up and stand up but luckily I never got too dizzy and felt like falling. As I got my blood pressure taken I noticed that everyday it was going down....90/60...84/55...80/50...92/66...then 73/40. 73/40?!!? If you don't understand what that means a normal blood pressure is 120/80. 73/40 is NOWHERE near that AT ALL. I was surprised I was still walking around! (The nurse had to hold my arm and walk me back because they don't want me to "drop" as they say here) So that was most likely caused from not drinking a gallon of water a day. It is hard to be drinking water or the likes constantly all day. If I didn't get rid of my cancer yet I'll just drown it in fluids. I got prescribed blood pressure medicine (yay more medicine to take with the handful that I'm taking already) and it seems to be helping already. I hit the 100's yesterday!
This past weekend I started to eat more and get more of my appetite back. I think eating (or lack there of) really affected my blood pressure too...so I'm happy to be eating again. Things still taste a little weird but it's manageable. I am up to 114 lbs which was gained from eating sugary snack foods that I would normally never eat but I have to now to gain weight. Cassidy told me "just eat everything you tell me not to eat". Haha. It is really hard for me to do that! I don't know how people eat this stuff everyday! It's hard cause I don't snack a lot and eat only when I'm hungry or remember to eat...so I am trying to train myself to eat throughout the day. :\ gotta keep trying
anyways, I just wanted to let you all know that I'm still alive and doing well. otherthan the blood pressure I have been doing great with my recovery; no fevers, no rashes, no nausea! I will update more often now that I finally have some energy and motivation back in me. I hope you all are doing well and keep in touch!
-sav
Wednesday, October 5, 2011
Thank god the light at the end of the tunnel isn't a train
Day +15!
So the last couple of days have been spent with my dad and I have had a great time with him here at MDA. Yesterday morning Nana left to go back home to Florida; we had a fun 10 days together and I can't believe how fast the time went by. I am thankful to have had the time spent with her and I can't wait to see her again in November :)
On the way to dropping Nana off at the airport Dad took a load of stuff from my room back to my apartment so that there is less to move when it is time to move out of the hospital. We were able to do that again today and slowly my room is looking less like my room and more like a plain hospital room. After the errands in the morning I went to go paint with Ian in the family lounge and work on the piece i am currently working on. I was there for a little over an hour before my nurse handed me my medicine that I had to take; it was in liquid form because my throat was too sore to take regular pills. It was almost time to wrap up my session anyways so as my dad started to clean up I quickly took my dose of medicine. I was feeling a little queasy prior to taking the medicine because it had been some time since I had eaten and that must have been enough to trigger something in my stomach because suddenly I wasn't feeling so good.
Let's just focus for a minute on my location; I am in the back of the family lounge with a table in front of me and to both sides of me. I am connected to my "tree" which holds my IV and there are a lot of chairs around me. The nearest sink or trash can is at the front of the room, about 20 feet away. Now back to not feeling so good.
I put my hand up to my mouth as my body jerked a little bit. with wide eyes I frantically look at my dad who realizes quickly that we need to move..fast. He has to back up and help move my tree to help get me out of my tight spot or this could end up messy for everyone. I step around him as fast as i can and just as I feel my stomach contents start pooling in my hand I lean over the trash can and throw up everything that I possibly had in my stomach. Let's remember for a second that I still have throat and mouth sores and throwing up is NOT the most comfortable act I could be doing. After emptying my stomach and cleaning up my hand and face I look around to see if I had made a mess on the carpet or anywhere else. Surprisingly no one or thing got hit in this attack. I gathered my things and headed back to my room to change and freshen up (I had gotten a little bit on my pants :( ).
Once I was feeling better Dad and I decided to head to the barber shop that they have for the patients on floor 6 and look at their wigs that they have to offer for free for the patients. Each patient is given one wig of their liking and I was excited to try a new look. Their selection was small but I had an idea of what I wanted; a brunette wig. I tried on a few wigs while dad took pictures of them on my iphone. we quickly decided on a long haired brunette wig that dad says makes me look like Zooe Claire Deschanel. As I am talking to the lady to check me out Dad is talking to a woman who was there with her mom, and it was her mom who was about to start treatment here. The mom didn't want to get a wig but she didn't want the opportunity to go to waste so she asked me if I wanted to pick out another wig and the mom get it for me. It was a very sweet thing for her to do for me so I said yes and picked out a cute short haired brunette wig. I am very thankful for her to do that for me and I hope she does well with her treatment.
After walking away with 2 new wigs Dad and I walked down to Kim's place to hang out with Mary, the lady who runs the arcade room. We mostly talked story and watched my dad get beat by almost 100 points on basketball (Mary has way too much time on her hands and makes almost every shot) before leaving to go back up to my room. We ate some food and as we were settling down for bed we decided to watch The Tourist, which I had seen before but not my dad...I ended up sleeping through most of it anyways.
Today was a busy day again. My dad got some more stuffed packed up to take to the apartment. Since the car was at Jan and Janet's house he ran the two miles to their house to pick up the car and drive it to MDA, pick up the stuff that I watched in the lobby, drive to the apartment and drop everything off then drive the car back to Jan and Janet's, eat lunch and then finally walk back to MDA. While all this was happening a man came up to me and told me that his wife was allergic to nickel and he showed me this pretty bracelet and asked if I wanted it. I accepted it and put it on my wrist. I am very thankful for the nice people I seem to be surrounded with everyday.
My nurse from the 11th floor, Kelly, came over to hang out with me today. Since I had scheduled an art class with Ian she joined us at the top of MDA and we all talked story while I worked on my painting. We were there for around an hour before going back to my room. She left about 3, with plans on seeing me on Saturday at my place if I ended up getting out on Friday. It was very nice hanging out with her today. Since it was only 3, after I ate a couple pieces of pasta and headed down with dad to Kim's place. We invited another friend, Laurie, down to hang out with us. After a game of pool (I beat dad!) Laurie came down and all four of us (Mary was there) played the game Trouble. guess who won?...me! By then it was 5:30 and time to head back to my room for dinner.
I attempted to eat enchiladas...but after taking some medicine and drinking a lot of water everything decided to come up. So far I have not eaten even a half a plate of food. I am hoping to leave on Friday but if I do not eat then they cannot release me. I only used fentanyl once today so hopefully they will take me off of that completely. Tomorrow I will hopefully be able to eat and take all my pills so that they will let me go!
I am exhausted after these two days. I have been moving all day and now it is time for bed. I hope that the next time I write a post it will be at home but only time will tell. I will let you know what happens next. i love you and good night!
-Savy
p.s. just a few words to say how thankful i am that my journey through cancer has been a smooth and not too difficult of a journey. I know there are a lot of children and adults out there who are in a much more worse scenario than i am and I am so thankful for how my journey has gone. I hope that everyone I have met and seen gets better and recovers fully.
So the last couple of days have been spent with my dad and I have had a great time with him here at MDA. Yesterday morning Nana left to go back home to Florida; we had a fun 10 days together and I can't believe how fast the time went by. I am thankful to have had the time spent with her and I can't wait to see her again in November :)
On the way to dropping Nana off at the airport Dad took a load of stuff from my room back to my apartment so that there is less to move when it is time to move out of the hospital. We were able to do that again today and slowly my room is looking less like my room and more like a plain hospital room. After the errands in the morning I went to go paint with Ian in the family lounge and work on the piece i am currently working on. I was there for a little over an hour before my nurse handed me my medicine that I had to take; it was in liquid form because my throat was too sore to take regular pills. It was almost time to wrap up my session anyways so as my dad started to clean up I quickly took my dose of medicine. I was feeling a little queasy prior to taking the medicine because it had been some time since I had eaten and that must have been enough to trigger something in my stomach because suddenly I wasn't feeling so good.
Let's just focus for a minute on my location; I am in the back of the family lounge with a table in front of me and to both sides of me. I am connected to my "tree" which holds my IV and there are a lot of chairs around me. The nearest sink or trash can is at the front of the room, about 20 feet away. Now back to not feeling so good.
I put my hand up to my mouth as my body jerked a little bit. with wide eyes I frantically look at my dad who realizes quickly that we need to move..fast. He has to back up and help move my tree to help get me out of my tight spot or this could end up messy for everyone. I step around him as fast as i can and just as I feel my stomach contents start pooling in my hand I lean over the trash can and throw up everything that I possibly had in my stomach. Let's remember for a second that I still have throat and mouth sores and throwing up is NOT the most comfortable act I could be doing. After emptying my stomach and cleaning up my hand and face I look around to see if I had made a mess on the carpet or anywhere else. Surprisingly no one or thing got hit in this attack. I gathered my things and headed back to my room to change and freshen up (I had gotten a little bit on my pants :( ).
Once I was feeling better Dad and I decided to head to the barber shop that they have for the patients on floor 6 and look at their wigs that they have to offer for free for the patients. Each patient is given one wig of their liking and I was excited to try a new look. Their selection was small but I had an idea of what I wanted; a brunette wig. I tried on a few wigs while dad took pictures of them on my iphone. we quickly decided on a long haired brunette wig that dad says makes me look like Zooe Claire Deschanel. As I am talking to the lady to check me out Dad is talking to a woman who was there with her mom, and it was her mom who was about to start treatment here. The mom didn't want to get a wig but she didn't want the opportunity to go to waste so she asked me if I wanted to pick out another wig and the mom get it for me. It was a very sweet thing for her to do for me so I said yes and picked out a cute short haired brunette wig. I am very thankful for her to do that for me and I hope she does well with her treatment.
After walking away with 2 new wigs Dad and I walked down to Kim's place to hang out with Mary, the lady who runs the arcade room. We mostly talked story and watched my dad get beat by almost 100 points on basketball (Mary has way too much time on her hands and makes almost every shot) before leaving to go back up to my room. We ate some food and as we were settling down for bed we decided to watch The Tourist, which I had seen before but not my dad...I ended up sleeping through most of it anyways.
Today was a busy day again. My dad got some more stuffed packed up to take to the apartment. Since the car was at Jan and Janet's house he ran the two miles to their house to pick up the car and drive it to MDA, pick up the stuff that I watched in the lobby, drive to the apartment and drop everything off then drive the car back to Jan and Janet's, eat lunch and then finally walk back to MDA. While all this was happening a man came up to me and told me that his wife was allergic to nickel and he showed me this pretty bracelet and asked if I wanted it. I accepted it and put it on my wrist. I am very thankful for the nice people I seem to be surrounded with everyday.
My nurse from the 11th floor, Kelly, came over to hang out with me today. Since I had scheduled an art class with Ian she joined us at the top of MDA and we all talked story while I worked on my painting. We were there for around an hour before going back to my room. She left about 3, with plans on seeing me on Saturday at my place if I ended up getting out on Friday. It was very nice hanging out with her today. Since it was only 3, after I ate a couple pieces of pasta and headed down with dad to Kim's place. We invited another friend, Laurie, down to hang out with us. After a game of pool (I beat dad!) Laurie came down and all four of us (Mary was there) played the game Trouble. guess who won?...me! By then it was 5:30 and time to head back to my room for dinner.
I attempted to eat enchiladas...but after taking some medicine and drinking a lot of water everything decided to come up. So far I have not eaten even a half a plate of food. I am hoping to leave on Friday but if I do not eat then they cannot release me. I only used fentanyl once today so hopefully they will take me off of that completely. Tomorrow I will hopefully be able to eat and take all my pills so that they will let me go!
I am exhausted after these two days. I have been moving all day and now it is time for bed. I hope that the next time I write a post it will be at home but only time will tell. I will let you know what happens next. i love you and good night!
-Savy
p.s. just a few words to say how thankful i am that my journey through cancer has been a smooth and not too difficult of a journey. I know there are a lot of children and adults out there who are in a much more worse scenario than i am and I am so thankful for how my journey has gone. I hope that everyone I have met and seen gets better and recovers fully.
Monday, October 3, 2011
15?!?!?!?!
So last night Cassidy spent the night and we watched The Jungle Book!! I borrowed this movie cause i knew it was his favorite. i of course fell asleep watching it. Then, believe it or not, we slept in until 10 am! I only woke up like 3 times (for the nurses) but other than that I slept great! And the only reason I woke up at 10 was because 5 doctors barged into my room and woke me up. This time the doctor got to tell me the good news....which was that my WBC count jumped from 5.8 to 15! Holy Crap! So thanks to the nupagen i have been receiving my bone marrow was on overdrive to pump up my immune system. They stopped the shots and told me they will go down a bit to allow my RBC and platelets to come up too. My throat was feeling fine this morning and since I felt good they were convinced I could leave by Wednesday. This was all very exciting to hear! After the chat me and cass watched Evan Almighty :) Oh! my throat was feeling good enough to eat foot loop cereal today :) that really got my hopes up that i'm finally healing up!
Nana and Dad came over right when the movie ended and me cass decided to go for a walk. We all decided to walk up to the 24th floor and meet jan, janet and Evelyn. Evelyn was Jan's bestfriend in engineer school (and the only two girls AND the top two students in the class) and she was the one who connected us with jan and janet. Evelyn's daughter is looking at Rice University which is what brought them to houston today. It's nice being able to wander around on the different floors again :)
My nurse today instructed that my caregivers order me food every two hours to have me nibble on something. I need to link up my brain and stomach again and the only way to really do that is eat every few hours instead of a large meal. I don't get hunger signals and instead get nauseous when i don't eat. I think it's really important that my caregivers just order me food without asking what i want because I can't taste anything and have no appetite to eat anything. I sometimes hate having to talk about food and having to deal with eating because as the day went on i realized that I still can't eat real food because it hurts too much. it is very frustrating not being able to eat real food. so even though the doctor said i could probably leave by wednesday I don't think i am eating well enough and i am still dependent on fentanyl to keep me out of pain. I thought i could get rid of it by tomorrow but my pain in my throat and mouth came back and i had to use the fentanyl again. It of course made me tired and queazy and before I could eat anything i threw up :( me, nana and cass were going to go play bingo tonight but i ended up taking a nap and slept till 7:30 (bingo started at 7).
Nana leaves tomorrow morning :( Dad is taking over as caregiving and he said he is looking forward to our one on one time we will get :) we used to go on little dates together when i was real young; we would go to Camp House Grill on Kauai and I would always get a milkshake and then go to the video store and rent My Little Pony movies. I am also looking forward to spending some time with him. I am going to an art lesson with Ian tomorrow then we are going to go to Kim's Place tomorrow and look at wigs at the barber shop they have at MDA...I think I am allowed to get a free wig so i hope they have something good! On Wednesday my friend Kelly (who started out as my nurse) is going to come hang out with me and we'll go cruise at Kim's place or play one of the many games I have in my room. Momma comes back on Thursday!
I found out today that I will NOT be able to be on a regular diet once my counts are back up. This is because my immune system is brand new and is like a newborn's immune system. If there is any bacteria in any fruit or veg that I eat I can get very very sick. I think I will be able to eat fruit that I can peal at least...but still none of my favorite salads or sandwiches that have yummy fresh veggies on it :( That is definitely the one thing I miss most.
well I am very tired...I've been both energetic and tired today which just messes with my head.I hope you all sleep well and I will update soon!
love savy
Nana and Dad came over right when the movie ended and me cass decided to go for a walk. We all decided to walk up to the 24th floor and meet jan, janet and Evelyn. Evelyn was Jan's bestfriend in engineer school (and the only two girls AND the top two students in the class) and she was the one who connected us with jan and janet. Evelyn's daughter is looking at Rice University which is what brought them to houston today. It's nice being able to wander around on the different floors again :)
My nurse today instructed that my caregivers order me food every two hours to have me nibble on something. I need to link up my brain and stomach again and the only way to really do that is eat every few hours instead of a large meal. I don't get hunger signals and instead get nauseous when i don't eat. I think it's really important that my caregivers just order me food without asking what i want because I can't taste anything and have no appetite to eat anything. I sometimes hate having to talk about food and having to deal with eating because as the day went on i realized that I still can't eat real food because it hurts too much. it is very frustrating not being able to eat real food. so even though the doctor said i could probably leave by wednesday I don't think i am eating well enough and i am still dependent on fentanyl to keep me out of pain. I thought i could get rid of it by tomorrow but my pain in my throat and mouth came back and i had to use the fentanyl again. It of course made me tired and queazy and before I could eat anything i threw up :( me, nana and cass were going to go play bingo tonight but i ended up taking a nap and slept till 7:30 (bingo started at 7).
Nana leaves tomorrow morning :( Dad is taking over as caregiving and he said he is looking forward to our one on one time we will get :) we used to go on little dates together when i was real young; we would go to Camp House Grill on Kauai and I would always get a milkshake and then go to the video store and rent My Little Pony movies. I am also looking forward to spending some time with him. I am going to an art lesson with Ian tomorrow then we are going to go to Kim's Place tomorrow and look at wigs at the barber shop they have at MDA...I think I am allowed to get a free wig so i hope they have something good! On Wednesday my friend Kelly (who started out as my nurse) is going to come hang out with me and we'll go cruise at Kim's place or play one of the many games I have in my room. Momma comes back on Thursday!
I found out today that I will NOT be able to be on a regular diet once my counts are back up. This is because my immune system is brand new and is like a newborn's immune system. If there is any bacteria in any fruit or veg that I eat I can get very very sick. I think I will be able to eat fruit that I can peal at least...but still none of my favorite salads or sandwiches that have yummy fresh veggies on it :( That is definitely the one thing I miss most.
well I am very tired...I've been both energetic and tired today which just messes with my head.I hope you all sleep well and I will update soon!
love savy
Sunday, October 2, 2011
CAN I GET A 'WHAT'!?! CAN I GET A 'OKAY'!!!
GREAT news today on day +12!!!!!!
I'm just going to start this blog saying that my body ROCKS and can kick some serious cancer ASS!! and yes, i'll note that my side kick, stem cell man, helped me in this process.
Last night I only asked for more pain medicine once; and this was because I didn't wake up to excruciating pain but only to the nurses walking in. Granted my mouth and throat still hurt but I can definitely feel that it's getting BETTER!!! knowing this, I asked my nurse to give me a copy of my counts to see if they went up at all. Right as she handed them to me one of my doctors came in and said "oh no! she spoiled the surprise! i wanted to tell you the good news!" well, the good news is that my WBC count jumped from 1.5 to 5.8...5.8!!!!!! that's above the minimal amount you need to be normal!!! I also saw that my neutrafil count was normal as well! My hemoglobin is still a little low but has been a steady 9.5 for a couple of days now and my platelets went UP by themselves!!! I'm so proud!! So i finally have some soldiers on my side to kick the bacteria out of my mouth and throat and start healing these wounds i've had for a week now. Another good thing about this is that my visitors don't have to wear a mask and gloves around me now :) I can see their faces again! everyone was so excited about this and Jan and Janet brought me cupcakes to celebrate :) P.s. the doc told me that if my numbers continue to be this good (because they are taking me off of nupagen which may cause my cell count to lower a bit) then I could be released by FRIDAY!!!!!!!!!! yay!!!!!! awesome awesome awesome! I've been here in the hospital for 20 days now but it really doesn't feel like it's been that long at all. but i'll be happy to be back in my own bed!
My dad is off work now for the rest of the week so we will have time to hang out together after nana the caregiver goes back to forida. It's been so nice having nana here and having her to help me through the painful times.
however, the few days have been a little weird for me...i've been very loopy and silly for no real reason. I think with the not eating food (or eating then throwing up) and taking really strong pain killers has started to mess with my head. I am so DROWSY all the time (could be from the lack of sleep too) and when i'm that drowsy i just get silly. I have conversations in my head that i think i'm having in real life and when i answer a question that i thought nana asked...nana tells me she has no idea what i'm talking about. and i'm like...really? hmmmm...and then i can't remember where that came from haha. i also have to focus my eyes really hard to see straight which is difficult to do when you are also battling your eyelids to stay open. my eyes are glazed over and i zone out very quickly in a conversation. I'm also not very hungry so eating gets hard to do and can make me nauseous.
in 3 days (if my counts stay high) i can eat on a regular diet again. however, my mouth still really hurts and food still tastes weird so I would much rather have those go away first before i can eat real food again.
Momma returns on Thursday, Nana leaves Tuesday morning and Lully doesn't get to come here at all like she was planning to do. I hope she gets to come soon! and luckily i wont be in the hospital when she does!
OH! i asked my doctor if these WBC were mine or trav's cells and she said they are defiitely his cells. they have been giving me a drug (they call it chemo but it really itsn't chemo) that suppresses my cells and allows travy's cells to grow and take over. that was a huge relief to hear...cause i didn't want MY cells coming back at all...they are in time out FOREVER.
Cassidy is staying the night with me while nana sleeps at the hilton with my dad. Cass has tomorrow off so it will be good to have him around since he has been mia with sickness and work :(
I have been a bad girl and has not done any exercises today. I don't know whats up with me but even though I slept pretty good through the night i was exhausted today. I just laid in bed, napped and relaxed all day while nana and dad were out.
oh yeah, something kida funny happed early this morning around 4:00 am. I got weighed and since i haven't really been eating a lot and most of what i eat gets thrown up and honestly unless water has fat in it there is no way i should be gaining weight! HOWEVER i went from weighing 118 lbs to 123 lbs in ONE day. be and nana were laughing so hard about this because it just makes no sense at all. i'm like "oh man, all this water i drink goes straight to me thighs". just thought i'd share that with you.
anyways i'm going to shower now. I hope you all are as excited about this news as i am. i hope that by this time next week i'll be home writing my blog on my comfy couch!
love you all!
sav
p.s. i'm losing all my hair again. I think i would've have been a brunette so for those of you who are making bets to what color hair i'll have after this can put down brunette for round one. BUT round two could be completely different! maybe i'll be a redhead this time...or blue? who knows!
I'm just going to start this blog saying that my body ROCKS and can kick some serious cancer ASS!! and yes, i'll note that my side kick, stem cell man, helped me in this process.
Last night I only asked for more pain medicine once; and this was because I didn't wake up to excruciating pain but only to the nurses walking in. Granted my mouth and throat still hurt but I can definitely feel that it's getting BETTER!!! knowing this, I asked my nurse to give me a copy of my counts to see if they went up at all. Right as she handed them to me one of my doctors came in and said "oh no! she spoiled the surprise! i wanted to tell you the good news!" well, the good news is that my WBC count jumped from 1.5 to 5.8...5.8!!!!!! that's above the minimal amount you need to be normal!!! I also saw that my neutrafil count was normal as well! My hemoglobin is still a little low but has been a steady 9.5 for a couple of days now and my platelets went UP by themselves!!! I'm so proud!! So i finally have some soldiers on my side to kick the bacteria out of my mouth and throat and start healing these wounds i've had for a week now. Another good thing about this is that my visitors don't have to wear a mask and gloves around me now :) I can see their faces again! everyone was so excited about this and Jan and Janet brought me cupcakes to celebrate :) P.s. the doc told me that if my numbers continue to be this good (because they are taking me off of nupagen which may cause my cell count to lower a bit) then I could be released by FRIDAY!!!!!!!!!! yay!!!!!! awesome awesome awesome! I've been here in the hospital for 20 days now but it really doesn't feel like it's been that long at all. but i'll be happy to be back in my own bed!
My dad is off work now for the rest of the week so we will have time to hang out together after nana the caregiver goes back to forida. It's been so nice having nana here and having her to help me through the painful times.
however, the few days have been a little weird for me...i've been very loopy and silly for no real reason. I think with the not eating food (or eating then throwing up) and taking really strong pain killers has started to mess with my head. I am so DROWSY all the time (could be from the lack of sleep too) and when i'm that drowsy i just get silly. I have conversations in my head that i think i'm having in real life and when i answer a question that i thought nana asked...nana tells me she has no idea what i'm talking about. and i'm like...really? hmmmm...and then i can't remember where that came from haha. i also have to focus my eyes really hard to see straight which is difficult to do when you are also battling your eyelids to stay open. my eyes are glazed over and i zone out very quickly in a conversation. I'm also not very hungry so eating gets hard to do and can make me nauseous.
in 3 days (if my counts stay high) i can eat on a regular diet again. however, my mouth still really hurts and food still tastes weird so I would much rather have those go away first before i can eat real food again.
Momma returns on Thursday, Nana leaves Tuesday morning and Lully doesn't get to come here at all like she was planning to do. I hope she gets to come soon! and luckily i wont be in the hospital when she does!
OH! i asked my doctor if these WBC were mine or trav's cells and she said they are defiitely his cells. they have been giving me a drug (they call it chemo but it really itsn't chemo) that suppresses my cells and allows travy's cells to grow and take over. that was a huge relief to hear...cause i didn't want MY cells coming back at all...they are in time out FOREVER.
Cassidy is staying the night with me while nana sleeps at the hilton with my dad. Cass has tomorrow off so it will be good to have him around since he has been mia with sickness and work :(
I have been a bad girl and has not done any exercises today. I don't know whats up with me but even though I slept pretty good through the night i was exhausted today. I just laid in bed, napped and relaxed all day while nana and dad were out.
oh yeah, something kida funny happed early this morning around 4:00 am. I got weighed and since i haven't really been eating a lot and most of what i eat gets thrown up and honestly unless water has fat in it there is no way i should be gaining weight! HOWEVER i went from weighing 118 lbs to 123 lbs in ONE day. be and nana were laughing so hard about this because it just makes no sense at all. i'm like "oh man, all this water i drink goes straight to me thighs". just thought i'd share that with you.
anyways i'm going to shower now. I hope you all are as excited about this news as i am. i hope that by this time next week i'll be home writing my blog on my comfy couch!
love you all!
sav
p.s. i'm losing all my hair again. I think i would've have been a brunette so for those of you who are making bets to what color hair i'll have after this can put down brunette for round one. BUT round two could be completely different! maybe i'll be a redhead this time...or blue? who knows!
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