Another two days closer to day zero. I am doing pretty good. Well much better since Kevin has been here since last night. He stayed the night again and made my evening and day today. He brought some games and the Wii so today we have been Mario Carting and Mario Partying. Makes the time pass bye and keep my spirits up.
I finished my chemo today as well. I got my last type of chemo called Melphalan. It only took a half an hour. I am still on lots of fluids to help flush my kidneys which is a good thing. I might need those later in life right?
Tomorrow is a rest day. Maria from the Leukemia and Lymphoma society Team in Training is coming up to see me and bringing me lunch. For that I am most appreciative. Kevin brought me Taco Bell last night and it was heaven. For anyone who has been stuck in the hospital for several days know how much outside food can make life so much better. I cant imagine women who are on bed rest from pregnancy for a couple of months at a time. They have to go absolutely crazy. I know I have been here for only 6 days and its making me a little stir crazy. And I still have just over two weeks at least to go.
But I be going home soon enough right? I am looking forward to transplant day. They give lots of regular meds and do holistics as well. I will get a food massage and these wrist bands that have little buttons on the underside to help with nausea. I like the whole approach to everything. Make everything more relaxing and not stressful. Makes life good.
Hope everyone is doing good. Talk to everyone soon I hope.
love,
Roxanne
Blood Counts:
WBC: 10.3
HCT: 31.8
PLT: 163
TP: 99
ANC: 10,197
Monday, September 29, 2008
Saturday, September 27, 2008
Day -4
Here I am still in the hospital. Only 18 days to go at least if I add correctly. By that seems like forever doesnt it? Stuck in your room at a hospital, door closed all the time. We have to keep the door closed to keep the hepa filter going at its maximum rate. I can leave my room of course but I cant leave the floor. Its a liabitlity to do so. I may just have to take the time to go outside tomorrow anyway. I am getting a little stir crazy.
Friday was an okay day. Not too much happened. I continued my cross stitch, got a nice visit from a volunteer named Katherine who is part of the DFW Metro TNT team. She was so sweet and I really enjoyed her company. I am looking forward to seeing Maria on Tuesday if she is feeling better as well. Other than that I read some, listened to some music and watched the Presidental Debate. Very interesting how they reacted to each other for sure.
Kevin was able to come up last night once he got off work. I was so happy to see him for sure. I am so used to being around him whenever we are not working and all that. I miss my kitties too but they will just have to wait. But having Kevin stay here last night and be here till 12:30pm today just made my life that much happier. It gets lonely here.
But I am starting to get more tired each day. I am still getting the same two chemo's from Day -6. I think I will get one more dose of each tomorrow then I switch one final type of drug on Monday. I am losing my appetite as well. I have only about 1/2 my usual appetite. But I am not complaining too much about that. With all the fluids that they are pumping into me I am retaining like crazy. I was put on a diaretic yesterday because of the retention. Joy I know, maybe even a little TMI but that is what you get from me here.
Emotionally I am doing okay most of the time. I do get lonely around here which does get me down some. So anyone who wants to shoot me some emails about how their lives are doing that would just cheer me up I know it. If I have too much time to sit and think then I start to get down. I spent most of my day doing cross stitch of course and watching Harry Potter. Well actually I listened to Harry Potter mostly because of the cross stitch. It kept me busy and I just have to do the outline on the piece I am working on now and it will be done. Yippee. Then its onto cross stitch Christmas Ornaments for family.
Well thats about all from me for now. I miss everyone and cant wait to get back to normal things in life, such as work, going to TNT, seeing family and friends. Thanks everyone for the support and love.
Roxanne
Friday was an okay day. Not too much happened. I continued my cross stitch, got a nice visit from a volunteer named Katherine who is part of the DFW Metro TNT team. She was so sweet and I really enjoyed her company. I am looking forward to seeing Maria on Tuesday if she is feeling better as well. Other than that I read some, listened to some music and watched the Presidental Debate. Very interesting how they reacted to each other for sure.
Kevin was able to come up last night once he got off work. I was so happy to see him for sure. I am so used to being around him whenever we are not working and all that. I miss my kitties too but they will just have to wait. But having Kevin stay here last night and be here till 12:30pm today just made my life that much happier. It gets lonely here.
But I am starting to get more tired each day. I am still getting the same two chemo's from Day -6. I think I will get one more dose of each tomorrow then I switch one final type of drug on Monday. I am losing my appetite as well. I have only about 1/2 my usual appetite. But I am not complaining too much about that. With all the fluids that they are pumping into me I am retaining like crazy. I was put on a diaretic yesterday because of the retention. Joy I know, maybe even a little TMI but that is what you get from me here.
Emotionally I am doing okay most of the time. I do get lonely around here which does get me down some. So anyone who wants to shoot me some emails about how their lives are doing that would just cheer me up I know it. If I have too much time to sit and think then I start to get down. I spent most of my day doing cross stitch of course and watching Harry Potter. Well actually I listened to Harry Potter mostly because of the cross stitch. It kept me busy and I just have to do the outline on the piece I am working on now and it will be done. Yippee. Then its onto cross stitch Christmas Ornaments for family.
Well thats about all from me for now. I miss everyone and cant wait to get back to normal things in life, such as work, going to TNT, seeing family and friends. Thanks everyone for the support and love.
Roxanne
Thursday, September 25, 2008
Day -6
Well here I am again in the hospital. I have been keeping myself busy here. Today I have done a lot of cross stitch, working on a piece for Kevin's Aunt. She was very helpful to us this year helping us move and coming when Kevin was in the hospital. She has gone through her own family crisis of cancer this year with her mother but found out good news this year when her cancer had not come back like they thought.
I also learned a type of meshing of knitting and crocheting. It is done on a round loom and makes the cutest winter caps. I made one today on a baby size loom so I have a cute dark purple hat for the top fin of my killer whale until someone I know has a baby. I think it will be easy to make scarves with it as well if I get that real think yard that is all whispy. It could be really cute.
I also listened to music and watched some episodes of Bones from the first season. I am trying to stay busy and make the time pass. Kevin was able to come up and see me last night which made me smile big bunches. He works a lot the rest of this week but seems to have Monday off so hopefully he will be up to watch Monday night football with me and play some card games.
Today I had two types of chemo today. First I had Cytarabine and Etoposide. I have had Etoposide before with the ICE I got but it never really caused any problems. So far I am doing great. Just trying to make the time pass bye. I am not really tired even though I am still waking up about every two hours. But I seem to fall back asleep really quick so I am not exhausted. I just get a little tired earlier than normal. No big deal there.
I got to talk to all of my family pretty much today. It was nice. I talked to my sister and my mother. They are having a great time. My eldest nephew yesterday told me he wasnt happy they were only staying there a week and wanted them to move in forever. So sweet he is at almost 9. Next month is his birthday along with his sister who turns 1. And for those of you who have seen pictures of little Delyla know how precious she is. Then I got to talk to my brother for a while and find out how he is doing. That was nice, even with his youngest screaming in his ear and mine, something about being afraid of geese flying around. Ah two year olds.
Well that is about all that is going one so far. I am definitiely glad that I am not having any problems. It makes this process so much easier to deal with. The time just needs to fly by and all will be awesome. Hope to see everyone as soon as I can. Love yall.
Roxanne
Blood Counts:
WBC: 14.6 (yesterdays 6900 was actually 6.9)
HCT: 33.6
PLT: 221
TP: 95
ANC: 12870
I also learned a type of meshing of knitting and crocheting. It is done on a round loom and makes the cutest winter caps. I made one today on a baby size loom so I have a cute dark purple hat for the top fin of my killer whale until someone I know has a baby. I think it will be easy to make scarves with it as well if I get that real think yard that is all whispy. It could be really cute.
I also listened to music and watched some episodes of Bones from the first season. I am trying to stay busy and make the time pass. Kevin was able to come up and see me last night which made me smile big bunches. He works a lot the rest of this week but seems to have Monday off so hopefully he will be up to watch Monday night football with me and play some card games.
Today I had two types of chemo today. First I had Cytarabine and Etoposide. I have had Etoposide before with the ICE I got but it never really caused any problems. So far I am doing great. Just trying to make the time pass bye. I am not really tired even though I am still waking up about every two hours. But I seem to fall back asleep really quick so I am not exhausted. I just get a little tired earlier than normal. No big deal there.
I got to talk to all of my family pretty much today. It was nice. I talked to my sister and my mother. They are having a great time. My eldest nephew yesterday told me he wasnt happy they were only staying there a week and wanted them to move in forever. So sweet he is at almost 9. Next month is his birthday along with his sister who turns 1. And for those of you who have seen pictures of little Delyla know how precious she is. Then I got to talk to my brother for a while and find out how he is doing. That was nice, even with his youngest screaming in his ear and mine, something about being afraid of geese flying around. Ah two year olds.
Well that is about all that is going one so far. I am definitiely glad that I am not having any problems. It makes this process so much easier to deal with. The time just needs to fly by and all will be awesome. Hope to see everyone as soon as I can. Love yall.
Roxanne
Blood Counts:
WBC: 14.6 (yesterdays 6900 was actually 6.9)
HCT: 33.6
PLT: 221
TP: 95
ANC: 12870
Wednesday, September 24, 2008
Day -7
Good morning everyone. Well I am here at Baylor Medical of Dallas in the lovely Collins Building, Floor 4, Room 428. I am a lucky girl in that I got the biggest room here in the bone marrow/stem cell transplant ward. It will come in handy next week when my parents are in town and of course Kevin visits too. For now I am going it alone during the days and Kevin is visiting when he can. The chemo that I start today at 10am is not supposed to be too bad. I may be a bit tired but that is about it till transplant.
So I was admitted yesterday after I had my central line put in. As you can see from the picture it is in my neck this time and has three connectors sticking out from it. That way one line gives me fluids, one line is to draw blood and one line is to give chemo. It keeps it all nice and sterile and seperate. They can have all those things going in at once instead of one at a time which is what happened when I had just the one line in my arm. That got pulled out on Monday. Didnt even feel it. Now I felt the central line go in but the worst part was actually getting the numbing meds so they could cut into me and stitch me up. Crazy I know.
But anyway today I am getting chemo drug BCNU. It is supposed to be housed in alcohol so I maybe drunk by the end of it. Should be fun to be buzzed in a hospital right? And for those who dont know today is day negative 7. The way they date you around here is the first day you have chemo you start out negative. I have 6 days of chemo, one day of rest, and then on day zero I get transplanted. So after the transplant the days will turn positive. Makes sense I guess. Its good to be positive.
So after I got my room Kevin and I moved me in. We decorated the windows and I will include that picture tomorrow. The window clings are so cute. Kevin put up all the pictures of my nephews and my niece as well as the picture of us. Its on the mini fridge right at the end of my bed so I just look ahead and see us and smile. I know it will help get me through all this that much easier. Right now I am just waiting on breakfast. Amazing how hungry I am after so little sleep. I woke up every two hours to either go to the bathroom (they pump me full of fluids until transplant) or to have my blood taken or to have my fluids changed, or get meds. But thankfully I was able to fall back to sleep easily.
Well breakfast is here. Talk to everyone tomorrow. I hope you all are doing good. Feel free to email me at ramahan2000@yahoo.com if you are bored.
love,
Roxanne
PS: I will be posting my blood work numbers for me to keep record of them.
WBC: 6900
HCT: 33.4
PLT: 185
TP: 80
ANC: 5520
Tuesday, September 2, 2008
Delay after delay
Well its been a while since I have updated this site. I have been busy for sure. After my second bout of ICE chemo I spent a lot of time at the hospital. It seemed that every time I went back to have my blood work checked I had to have something done. The first time I had to have a blood transfusion, 2 units. Then I went back 4 days later and had to have a platelet transfusion. According to their factors if your platelets dip to 15 or below you get to be transfused. Well mine were 15. That was on a Friday. Well Kevin and I went back on that following Monday expecting things to be better and not spend much time there but my platelets had dipped even further, down to a 12. Crazy huh? I went back a week later and they were finally good, at 277 and the I got the best news of all. I had had a PET scan earlier that morning and it came back clear which means I am officially in remission. Yippee.
That was a little over a week ago. I thought I would be in the hospital starting last Thursday to begin the BEAM chemo, and then transplant. But as some of you may know, nothing is that easy when it comes to insurance companies. I found out last Tuesday that a lot more has to be done first. A letter and my medical records had to be sent to the case manager for Cigna to determine that it is medically necessary for me to have the transplant. Then after that is approved I will have to go through a battery of tests. My oncology coordinator said it should only take a week to get approved and then two days to do all the tests which include an EKG, pulmonary function test, kidney function test, bone marrow biopsy (my least favorite) and some kind of additional body scan.
So I gave everyone a week right? So I call my Cigna case manager this morning and she says she hasnt gotten any of the paperwork yet. And she informs me that there is no way that the tests could all be done in two days. I said what kind of other tests are needed? One was a clean check from my dentist. Thank goodness I went to the dentist last week because a tooth was bothering me. I had a cavity and got if fixed the same day. And she said other tests but didnt specify. So after that I got off the phone and called my onc coordinator. She said the insurance coordinator in their office sent all the paperwork last week. So between these three people they were supposed to be faxing each other to get all approved. Thankfully I got a call after the lunching hour and am approved to do all the tests and my doctor knows what tests I am supposed to do now. So hopefully they will get this all scheduled this week so that all can be done by next week.
I would like to be in the hospital by the 15th but who knows if that is what will happen. I really just want to be home for Halloween and have the strength to have a happy Thanksgiving and Christmas. That is my main goal really. Kevin and I have been buying decorations to make our screened in porch really spooky for halloween. It helps that he works at Michael's right now so I can buy stuff on discount. The coolest thing we have gotten so far are these window clings that are gelly like. They are bloody hand prints. They are so cool.
My sister is on her way up here tomorrow night to stay with me for a few days. I am so excited. She was planning to come stay with me because I was going to be doing my transplant on Friday. But even though I am not going to the hospital she so deserves a break. All you mothers out there know how hard it can be to find time for yourself. She hasn't had time away from all the kids since before she was pregnant with Dalton who is three now. So she is very deserving of this vacation she is getting. We are going to Sam Moon, The Pocket Sandwich Theatre with Kevin, and who knows what else. We will be watching movies and all sorts of stuff. Kevin unfortunately will be working most of the time, except Friday so its girl time.
I hope everyone is doing great and had a wonderful Labor Day. Don't labor too hard now that the work week has started again. I am trying to clean my apartment in slow batches. Everything can be done as long as I do it in batches so I don't exhaust myself. Take care everyone and I love you all.
That was a little over a week ago. I thought I would be in the hospital starting last Thursday to begin the BEAM chemo, and then transplant. But as some of you may know, nothing is that easy when it comes to insurance companies. I found out last Tuesday that a lot more has to be done first. A letter and my medical records had to be sent to the case manager for Cigna to determine that it is medically necessary for me to have the transplant. Then after that is approved I will have to go through a battery of tests. My oncology coordinator said it should only take a week to get approved and then two days to do all the tests which include an EKG, pulmonary function test, kidney function test, bone marrow biopsy (my least favorite) and some kind of additional body scan.
So I gave everyone a week right? So I call my Cigna case manager this morning and she says she hasnt gotten any of the paperwork yet. And she informs me that there is no way that the tests could all be done in two days. I said what kind of other tests are needed? One was a clean check from my dentist. Thank goodness I went to the dentist last week because a tooth was bothering me. I had a cavity and got if fixed the same day. And she said other tests but didnt specify. So after that I got off the phone and called my onc coordinator. She said the insurance coordinator in their office sent all the paperwork last week. So between these three people they were supposed to be faxing each other to get all approved. Thankfully I got a call after the lunching hour and am approved to do all the tests and my doctor knows what tests I am supposed to do now. So hopefully they will get this all scheduled this week so that all can be done by next week.
I would like to be in the hospital by the 15th but who knows if that is what will happen. I really just want to be home for Halloween and have the strength to have a happy Thanksgiving and Christmas. That is my main goal really. Kevin and I have been buying decorations to make our screened in porch really spooky for halloween. It helps that he works at Michael's right now so I can buy stuff on discount. The coolest thing we have gotten so far are these window clings that are gelly like. They are bloody hand prints. They are so cool.
My sister is on her way up here tomorrow night to stay with me for a few days. I am so excited. She was planning to come stay with me because I was going to be doing my transplant on Friday. But even though I am not going to the hospital she so deserves a break. All you mothers out there know how hard it can be to find time for yourself. She hasn't had time away from all the kids since before she was pregnant with Dalton who is three now. So she is very deserving of this vacation she is getting. We are going to Sam Moon, The Pocket Sandwich Theatre with Kevin, and who knows what else. We will be watching movies and all sorts of stuff. Kevin unfortunately will be working most of the time, except Friday so its girl time.
I hope everyone is doing great and had a wonderful Labor Day. Don't labor too hard now that the work week has started again. I am trying to clean my apartment in slow batches. Everything can be done as long as I do it in batches so I don't exhaust myself. Take care everyone and I love you all.
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