Well its more of the same boring stuff going on in the hospital. No procedures or transfusions today, but mostly just waiting around to get better. The rounds with the doctors in the morning are pretty predictable at this point. I'm making progress and am doing as well as expected. I'm very happy that I haven't had any signs of Graft Versus Host Disease so far.
Well a year ago at this time I was checking myself into the same ward I am on now at NIH. I had a neutropenic fever and had to spend 4 nights in the hospital. Its a bit depressing to be in the same place, dealing with the same disease as I was a year ago. Its an annoying reminder of how long I've had to deal with cancer, and my journey isn't over yet.
New Year's Resolutions are usually things that you can control, so resolving to be cancer free wouldn't make sense. However, I will be praying tonight that 2009 will bring about the end of my struggles with this disease. I will be very happy to celebrate New Year's Eve next year with a clean bill of health.
I was anticipating that I might be home tonight as the best case scenario, since this is Day +14, and thats the earliest the protocol mentioned people would be released. I was also excited because several of the nurses yesterday mentioned that I would be heading home on Friday. However, I asked the attending physician today if there was a set day for discharge, and he said there was not. So Friday might not be my day to return home. There will be a new attending physician tommorow, so I wonder if this new doctor will have a different time frame for my release. Like I've said about dealing with cancer before, once you think you know whats going on, you get shown you are wrong. So I'm not sure when I'll be discharged, but I'm praying its soon.
I hope everybody is having a positive New Year's celebration, and that 2009 turns out to be a great year for all of us. Thanks again to everybody who is offering their prayers and support.
Wednesday, December 31, 2008
Tuesday, December 30, 2008
Day +13
Today was a little more exciting than yesterday, but not by much. My absolute neutrophil count rose by about 100 this morning. Thats in the right direction but not as much as I would have liked. As usual, the reports from the doctors were all positive. It seems like my discharge date has been scheduled for Friday. So if everything goes well for the next few days I should be home by the weekend!
My platelets held steady from yesterday to today, so the Doctor shared that he didn't think I needed a platelet transfusion. I reported that I hadn't had any major nosebleeds for a few days, so he was happy with that. Then he asked me to sit up so he could check my back for any rashes, and a drop of blood dripped out of my nose. He turned to the other doctor on rounds with him and said, "I guess we should go ahead and order platelets anyways."
I also got two units of blood, although my hemoglobin was only in the 9's. I'm used to 9's being high for my hemoglobin, so its kind of funny that they infuse me inpatient when they are at that level. Oh well...if it gives me more energy, then I'll take it.
Everything else seems to be going well, and its encouraging to know where the finish line is. Tommorow will be two weeks since the transplant, and I can't believe how time has flown by. It feels like forever since I've been at work or at home, but at least I haven't been bored too much in here.
My platelets held steady from yesterday to today, so the Doctor shared that he didn't think I needed a platelet transfusion. I reported that I hadn't had any major nosebleeds for a few days, so he was happy with that. Then he asked me to sit up so he could check my back for any rashes, and a drop of blood dripped out of my nose. He turned to the other doctor on rounds with him and said, "I guess we should go ahead and order platelets anyways."
I also got two units of blood, although my hemoglobin was only in the 9's. I'm used to 9's being high for my hemoglobin, so its kind of funny that they infuse me inpatient when they are at that level. Oh well...if it gives me more energy, then I'll take it.
Everything else seems to be going well, and its encouraging to know where the finish line is. Tommorow will be two weeks since the transplant, and I can't believe how time has flown by. It feels like forever since I've been at work or at home, but at least I haven't been bored too much in here.
Day +12
Yesterday was Day +12, and it was boring. My neutrophil count went over 1.000 for the first time since my counts dropped. My white blood cells were 1.480 and my absolute neutrophil count was 1.199. That was a nice milestone. The doctors didn't have anything else special to report, and it looks like everything is progressing without problem.
I did ask the doctor now that I am feeling well when he thought I might get discharged. He stated most likely the end of this week. Thats pretty good news. I think I'll be able to manage until then. Otherwise, like I said before, Day +12 was a pretty boring day. Not much going on, but I'm feeling a lot closer to discharge.
I did ask the doctor now that I am feeling well when he thought I might get discharged. He stated most likely the end of this week. Thats pretty good news. I think I'll be able to manage until then. Otherwise, like I said before, Day +12 was a pretty boring day. Not much going on, but I'm feeling a lot closer to discharge.
Sunday, December 28, 2008
Day +11
Today is Day +11, and I am feeling as good as I have since entering the hospital. My white blood cells continue to increase, going from .718 yesterday afternoon, to .903 this morning, and 1.430 this afternoon. The absolute neutrophil count rose above .500 to .605 this morning. That means I am no longer neutropenic, and no longer have to take the antibiotic I've been on since my counts started dropping.
In addition to the good blood counts, my day was made better when my nurse let me know it was in the 60's outside and I could go take a walk. There was a nice breeze outside and it felt like the beginning of spring. I wasn't outdoors for a long time, but it was the first time I've been outside since December 9th. Its hard to believe that its almost been three weeks since I was admitted. Although parts of the day can be quite slow, the whole process is flying by.
My bladder issues are still a nuisance, but I think I observed the most improvement with that today. Another thing that has been bothering me the last 3 nights and not helping with my sleep has been some neuropathy in my toes. I've had slight neuropathy in my fingers with chemotherapy, but it didn't have a negative effect on my motor skills. However, my toes have felt like they were burning. I've found wasy to help deal with it, like placing them in a cold shower, putting lotion on them, and elevating my feet. However, those solutions only last a short amout of time, and I've been finding myself still awake with the burning toes. Tonight I was given some oxycodone for it, so hopefully that will help me get to sleep easier. Speaking of sleep...I can't wait to get back to my bed back home! I feel like I am getting to the end of my stay here, and the idea of going home is extremely exciting.
In addition to the good blood counts, my day was made better when my nurse let me know it was in the 60's outside and I could go take a walk. There was a nice breeze outside and it felt like the beginning of spring. I wasn't outdoors for a long time, but it was the first time I've been outside since December 9th. Its hard to believe that its almost been three weeks since I was admitted. Although parts of the day can be quite slow, the whole process is flying by.
My bladder issues are still a nuisance, but I think I observed the most improvement with that today. Another thing that has been bothering me the last 3 nights and not helping with my sleep has been some neuropathy in my toes. I've had slight neuropathy in my fingers with chemotherapy, but it didn't have a negative effect on my motor skills. However, my toes have felt like they were burning. I've found wasy to help deal with it, like placing them in a cold shower, putting lotion on them, and elevating my feet. However, those solutions only last a short amout of time, and I've been finding myself still awake with the burning toes. Tonight I was given some oxycodone for it, so hopefully that will help me get to sleep easier. Speaking of sleep...I can't wait to get back to my bed back home! I feel like I am getting to the end of my stay here, and the idea of going home is extremely exciting.
Day +10
Day +10 is almost over and things are still looking positive. My neutrophil count made a huge jump to .484, so its starting to look like I have some semblance of an immune system. When the doctors came on rounds today, they didn't feel there was anything going on that was a problem, and that "I'm on their good list." I'll take that.
Unfortunately the morning was somewhat chaotic. I slept very poorly last night because of the continuing bladder issue. Its hard to get a good rest when you are up once or twice an hour. So about 8:00 in the morning I finally had settled into a restful state, when blood started gushing out of my nose. My whole life I've been a nose bleeder, and most of this week I've had dried blood in my nose rather than mucus. I must have done something to clear the airway, and there was fresh blood all over the sheet and pillows.
Since I've dealt with bloody noses most of my life, I tried to stop the bleeding the way I normally do. However, my techniques didn't work quickly with my low platelet count. When the nurse came in she got me a bag of ice and cleaned up after me so I could rest and try to stop the bleeding. I wasn't supposed to get platelets today, but because of the bleeding they ordered them right then.
So while I am getting the platelets my nurse takes my vital signs, which includes taking my blood pressure. She said she was going to be back in 10 minutes and asked if I was fine leaving the blood pressure cuff on. I said yes...thinking what would be the problem with that. The problem arose when my bladder started yelling at me to empty. I got the cuff off of my arm with no problem. Then I got my backpack that carries my ambulatory pump for the Tacrolimus. I struggle out of bed, and since I'm still receiving platelets I need to roll the IV pole into the bathroom with me as well. Ok...still feeling alright. However, the cord for the blood pressure machine is plugged in and pulled tight in front of the bathroom door. I go to reach for the plug, but my Tacrolimus line is caught on the bedframe. Now I'm feeling anxious. I get the line unstuck, unplug the blood pressure machine, and try to pull the IV pole into the bathroom. The good news is that I got to the bathroom before urinating. The bad news is that I didn't quite make it to the urinal. So I clean myself up and my nurse comes in. I explain what happened with the bathroom, and like a true professional she takes it all in stride.
I guess the message of the day is to give a ton of respect to nurses. They put up with a lot of nasty stuff in hospitals, and don't get the credit they deserve.
After the bleeding and the bathroom debacles, the day went pretty smoothly. I had another great visit from my family, and am starting to get excited about going home. Hopefully within the week I'll be back in the real world.
Unfortunately the morning was somewhat chaotic. I slept very poorly last night because of the continuing bladder issue. Its hard to get a good rest when you are up once or twice an hour. So about 8:00 in the morning I finally had settled into a restful state, when blood started gushing out of my nose. My whole life I've been a nose bleeder, and most of this week I've had dried blood in my nose rather than mucus. I must have done something to clear the airway, and there was fresh blood all over the sheet and pillows.
Since I've dealt with bloody noses most of my life, I tried to stop the bleeding the way I normally do. However, my techniques didn't work quickly with my low platelet count. When the nurse came in she got me a bag of ice and cleaned up after me so I could rest and try to stop the bleeding. I wasn't supposed to get platelets today, but because of the bleeding they ordered them right then.
So while I am getting the platelets my nurse takes my vital signs, which includes taking my blood pressure. She said she was going to be back in 10 minutes and asked if I was fine leaving the blood pressure cuff on. I said yes...thinking what would be the problem with that. The problem arose when my bladder started yelling at me to empty. I got the cuff off of my arm with no problem. Then I got my backpack that carries my ambulatory pump for the Tacrolimus. I struggle out of bed, and since I'm still receiving platelets I need to roll the IV pole into the bathroom with me as well. Ok...still feeling alright. However, the cord for the blood pressure machine is plugged in and pulled tight in front of the bathroom door. I go to reach for the plug, but my Tacrolimus line is caught on the bedframe. Now I'm feeling anxious. I get the line unstuck, unplug the blood pressure machine, and try to pull the IV pole into the bathroom. The good news is that I got to the bathroom before urinating. The bad news is that I didn't quite make it to the urinal. So I clean myself up and my nurse comes in. I explain what happened with the bathroom, and like a true professional she takes it all in stride.
I guess the message of the day is to give a ton of respect to nurses. They put up with a lot of nasty stuff in hospitals, and don't get the credit they deserve.
After the bleeding and the bathroom debacles, the day went pretty smoothly. I had another great visit from my family, and am starting to get excited about going home. Hopefully within the week I'll be back in the real world.
Friday, December 26, 2008
Day +9
The good news from yesterday continues today. My absolute neutrophil count rose from .034 to .166. With the neutrophils rising quickly, I'll soon be above what is considered neutropenic. I received platelets again today, and my afternoon labs show that they are still way below normal at 19. So I'm getting used to a daily dose of platelets. Can't wait to see those start rising on their own as well.
I've had a pain in my groin the last two days and went for an ultrasound today. The good news is that nothing serious was found by the ultrasound. However, the doctor couldn't tell me what the reason for the pain is. Hopefully it will just subside on its own, but thats what I've been told will happen with the blood in my urine and that hasn't happened yet. The most important thing to know is that the engraftment is working, but I am truly hoping for no more uncomfortable side effects and an end to the ones I have.
Other than a visit from Kate, this was a boring day...which is a good thing.
I've had a pain in my groin the last two days and went for an ultrasound today. The good news is that nothing serious was found by the ultrasound. However, the doctor couldn't tell me what the reason for the pain is. Hopefully it will just subside on its own, but thats what I've been told will happen with the blood in my urine and that hasn't happened yet. The most important thing to know is that the engraftment is working, but I am truly hoping for no more uncomfortable side effects and an end to the ones I have.
Other than a visit from Kate, this was a boring day...which is a good thing.
Thursday, December 25, 2008
Christmas is Day +8
This was a very good Christmas. I met with the doctors early in the morning, and they gave me the best news of the day. They believe the donor cells have engrafted!!!
Over the last 3 blood draws, my white blood cell count has gone from .043, to .107, to .123. My neutrophil count also jumped from .06 to .034. Since the average range of healthy white blood cells is 3.3-8.7, I am still a while away from sitting pretty. However, every step in the right direction is something to give Thanks for.
My platelets this morning were down to 5, their lowest yet. They only bumped up to 12 after receiving another tranfusion this morning. Seeing the platelets rise without the need for more transfusions is the next thing for me to keep my eye on, but the white blood cells are the most important.
Since this is Day +8, my engraftment came pretty early. The lead doctor told us before beginning the study that the earliest they've seen is Day +7, day +8 is rare, but most occur between Days +9 and +12. The earliest I've heard of people leaving the hospital after this procedure is Day +14, which would be New Years Eve. Since I had to come into the hospital with a neutropenic fever last year on January 31st, I think it would be fitting if my discharge date after transplant would be exactly one year later.
After me platelet tranfusion, I had a great visit with my family. Kate brought Isaiah, her sister Jen, and her parents in around 11:00, and we were able to make the Christmas Mass held in NIH's chapel. After Mass, my parents came along with Mary, Mya, Reed, Matt, and Tim. We had lunch in the activity room down the hall, and had a big gift giving session. I was overwhelmed by the amount of gifts everybody gave to each other, and Kate told me it was nothing compared to what Isaiah got to open up at home. I don't know how our small house is going to fit all of these new things, but I'm glad there was such joy amongst everybody today. I remember feeling disappointed last year that Kate and I only had several presents for Isaiah under the tree. Anybody who knows me well knows I'm not materialistic, but the joy it brought to his face to open each present was the best feeling in the world. I missed out on some of that this Christmas, but my hope is that cancer never gets in the way of any future Christmases or holidays again.
Thanks to everybody who shared their Christmas wishes and stories on the guestbook. I hope everybody who I'm sharing with had an amazing Christmas with their families as well.
Over the last 3 blood draws, my white blood cell count has gone from .043, to .107, to .123. My neutrophil count also jumped from .06 to .034. Since the average range of healthy white blood cells is 3.3-8.7, I am still a while away from sitting pretty. However, every step in the right direction is something to give Thanks for.
My platelets this morning were down to 5, their lowest yet. They only bumped up to 12 after receiving another tranfusion this morning. Seeing the platelets rise without the need for more transfusions is the next thing for me to keep my eye on, but the white blood cells are the most important.
Since this is Day +8, my engraftment came pretty early. The lead doctor told us before beginning the study that the earliest they've seen is Day +7, day +8 is rare, but most occur between Days +9 and +12. The earliest I've heard of people leaving the hospital after this procedure is Day +14, which would be New Years Eve. Since I had to come into the hospital with a neutropenic fever last year on January 31st, I think it would be fitting if my discharge date after transplant would be exactly one year later.
After me platelet tranfusion, I had a great visit with my family. Kate brought Isaiah, her sister Jen, and her parents in around 11:00, and we were able to make the Christmas Mass held in NIH's chapel. After Mass, my parents came along with Mary, Mya, Reed, Matt, and Tim. We had lunch in the activity room down the hall, and had a big gift giving session. I was overwhelmed by the amount of gifts everybody gave to each other, and Kate told me it was nothing compared to what Isaiah got to open up at home. I don't know how our small house is going to fit all of these new things, but I'm glad there was such joy amongst everybody today. I remember feeling disappointed last year that Kate and I only had several presents for Isaiah under the tree. Anybody who knows me well knows I'm not materialistic, but the joy it brought to his face to open each present was the best feeling in the world. I missed out on some of that this Christmas, but my hope is that cancer never gets in the way of any future Christmases or holidays again.
Thanks to everybody who shared their Christmas wishes and stories on the guestbook. I hope everybody who I'm sharing with had an amazing Christmas with their families as well.
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