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.
Wednesday, December 24, 2008
Christmas Eve is Day +7
Merry Christmas. I hope that everybody reading this is enjoying their holiday celebration. Christmas Eve is my day +7 out of transplant. I'm still not feeling great, but at times today I did feel a lot better. Maybe its an early Christmas gift, but my neutrophil count rose again from .005, to .006, to .011. That is still extremely low and incredibly risky for infection, however that looks like its moving on the right path. My temperature has been raised a bit the last two days, but not to the point of fever. I'm praying that it stays that way and that the increase in neutrophils is an early sign of engraftment.
I received platelets again today...fourth day in a row. Since they were only at 11 on my afternoon lab count, they will probably be back in the single digits soon and I'll probably need more platelets tommorow.
I miss not being with my family for Christmas, but the plan is for all of them to come to the hospital tommorow for a litle celebration here. We aren't perfect, but I have an excellent family. I want to thank them all for everything they have done to help me out. Once again...Merry Christmas to everybody.
I received platelets again today...fourth day in a row. Since they were only at 11 on my afternoon lab count, they will probably be back in the single digits soon and I'll probably need more platelets tommorow.
I miss not being with my family for Christmas, but the plan is for all of them to come to the hospital tommorow for a litle celebration here. We aren't perfect, but I have an excellent family. I want to thank them all for everything they have done to help me out. Once again...Merry Christmas to everybody.
Day +6
Today was day six and not much really changed. My neutrophil count went up from .005 to .006. I've been eagerly awaiting my counts to start shooting up, but I think those numbers represent an insignificant difference.
I also received platelets for the third time in as many days. It seems like every time I receive the platelets they bounce up and then head back to an even lower point the next morning. I guess that shows how much my body is beat down right now, and I'm grateful for the people who go out of their way to donate platelets.
Those were the big medical news for the day. As usual the doctors say everyhing is on the right track. My bladder issue is still a nuisance, and hopefully that will resolve itself soon.
Kate came by for a long visit today, and that helped the day fly by. I want to give thanks to Kate's family for helping her out with Isaiah and making it easier for her to make time to come over here. After she left my Dad was around, and he was later joined by my brother Matt and our family friend Christy. They all got to watch the process of having one of my lumen's fixed on my Hickman line. While one of my three lines was being flushed with saline, I heard a pop and felt something wet on my midsection. A hole just burst open in the lining, and I had saline and blood on my belly. Luckily this didn't happen when chemo was coming through. That would have been more of a problem.
I also received platelets for the third time in as many days. It seems like every time I receive the platelets they bounce up and then head back to an even lower point the next morning. I guess that shows how much my body is beat down right now, and I'm grateful for the people who go out of their way to donate platelets.
Those were the big medical news for the day. As usual the doctors say everyhing is on the right track. My bladder issue is still a nuisance, and hopefully that will resolve itself soon.
Kate came by for a long visit today, and that helped the day fly by. I want to give thanks to Kate's family for helping her out with Isaiah and making it easier for her to make time to come over here. After she left my Dad was around, and he was later joined by my brother Matt and our family friend Christy. They all got to watch the process of having one of my lumen's fixed on my Hickman line. While one of my three lines was being flushed with saline, I heard a pop and felt something wet on my midsection. A hole just burst open in the lining, and I had saline and blood on my belly. Luckily this didn't happen when chemo was coming through. That would have been more of a problem.
Monday, December 22, 2008
Day +5
Day +5 is over. It really does feel good to count down the days, even though I don't know the exact day I will get out of here. Today was a decent day for me. It wasn't the worst or the best. I got more platelets, which only brought me up to 23. Still a very low number, but without that I'd probably be in the single digits. I also got two units of red blood cells, which should help my energy.
My white blood cells shrank from .039 to .031. So I'm still decreasing. I can't wait to see those numbers start coming up. Despite the high risk of infection I haven't spiked a fever yet. The bladder issues and the diarhea are the two most bothersome issues right now. The bladder problem I feel is slowly improving, but still not comfortable. This evening I've noticed how badly my hands have dried out from the constant handwashing. I took a shower and the water stung my hands and wrists from where the skin has been so badly treated. So its time to up the amount of times I put lotion on them to keep things moist.
Not much else to report today. Doctors feel everything is progressing well, and I was able to get a visit in from Kate which was nice. Its still probably too risky for a sick Isaiah to come visit. I guess this means I just have to sleep a bit longer to make the time fly by faster.
My white blood cells shrank from .039 to .031. So I'm still decreasing. I can't wait to see those numbers start coming up. Despite the high risk of infection I haven't spiked a fever yet. The bladder issues and the diarhea are the two most bothersome issues right now. The bladder problem I feel is slowly improving, but still not comfortable. This evening I've noticed how badly my hands have dried out from the constant handwashing. I took a shower and the water stung my hands and wrists from where the skin has been so badly treated. So its time to up the amount of times I put lotion on them to keep things moist.
Not much else to report today. Doctors feel everything is progressing well, and I was able to get a visit in from Kate which was nice. Its still probably too risky for a sick Isaiah to come visit. I guess this means I just have to sleep a bit longer to make the time fly by faster.
Day +4
Yesterday was day +4 after the transplant. The big issue from the day before was the bladder problem and urinary pain. Yesterday that subsided, but did not go away. I still have an intense urgency when it is time to go to the bathroom. Hopefully the progress continues and my bathroom experiences can return to nomal soon.
My blood counts are still dropping, although I think the latest ones might show my white blood cells have bottomed out. I get my blood drawn at least twice a day, and since staring Saturday morning my WBCs have gone from .151 to .102, to .059, to.038. With that rate of descent, I should probably bottom out without any white blood cells at some point today. The doctors came in just now and said that my neutrophils were at .003. Not many more of those cells to lose, and he expects about a week for the white blood cells to come up again. This period of time is when I am at my greatest risk of infection, and hopefully my counts start rebounding quickly.
During this same amount of time my platelets went from 55 to 22 to 10. Thats extremely low considering the desired range is from 147 to 347. So I have my first blood transfusion last night. Like the bone marrow transplant, it is a very simple tranfusion. Following the transfusion my platelets went up to just 16, and were down this morning to 13. So it looks like I'll be getting another platelet tranfusion today, as well as red blood cells.
I was supposed to go to a discharge meeting to give me information on what to expect as an oupatient transplant patient. With my bladder not working correctly, I did not want to go. My parents are there now and geting information. I also have a chest X ray scheduled for today, but I think that is just precautionary. I haven't had any problems with breating throughout this process. Ok...on to battle another day. Thank you all for your support.
My blood counts are still dropping, although I think the latest ones might show my white blood cells have bottomed out. I get my blood drawn at least twice a day, and since staring Saturday morning my WBCs have gone from .151 to .102, to .059, to.038. With that rate of descent, I should probably bottom out without any white blood cells at some point today. The doctors came in just now and said that my neutrophils were at .003. Not many more of those cells to lose, and he expects about a week for the white blood cells to come up again. This period of time is when I am at my greatest risk of infection, and hopefully my counts start rebounding quickly.
During this same amount of time my platelets went from 55 to 22 to 10. Thats extremely low considering the desired range is from 147 to 347. So I have my first blood transfusion last night. Like the bone marrow transplant, it is a very simple tranfusion. Following the transfusion my platelets went up to just 16, and were down this morning to 13. So it looks like I'll be getting another platelet tranfusion today, as well as red blood cells.
I was supposed to go to a discharge meeting to give me information on what to expect as an oupatient transplant patient. With my bladder not working correctly, I did not want to go. My parents are there now and geting information. I also have a chest X ray scheduled for today, but I think that is just precautionary. I haven't had any problems with breating throughout this process. Ok...on to battle another day. Thank you all for your support.
Day +3
I sort of mentioned in passing yesterday that I my day was ending with a request for the doctor to get me some help with a potential UTI. Well...that has become the entirety of Day +3. I was having pain in my bladder right before I urinated, and it continued as the stream went out. That happened several times and I let my nurse know. The next time I ended up urinating I passed something a bit thicker than liquid. I called the nurse again, and she explained it was mucus in the urine. She took that sample and sent it to get tested. Meanwhile, I continue to have to pee frequently and each time I pass some of this mucus. I've definitely taken for granted a healthy stream in my lifetime.
The nurse returned and said there were red blood cells in the urine, but that another sample would be needed. No problem...I'm going every 15 minutes, so I'll have that sample in no time. She took the sample, but unfortunately results would not be back until the morning. So sleep did not come in long spurts last night and I awoke very tired.
When the doctors came on rounds they explained that there were more red blood cells than white blood cells, which means it is likely hemorrhagic cystitis. That was the condition that I've been warned about before taking cytoxan. While I was hydrated well and received messna to help protect the lining of my bladder while undergoing the cytoxan infusions, I had diarhea the previous two days. The diarhea left me dehydrated, and I wasn't passing urine at the rate I should have been. So the toxins from the cytoxan that still remain in the body, broke down the interior bladder walls which led to this condition.
The doctors shared that there isn't a cure for this, but that it will most likely return to normal in several days. Right now I have been given a drug to help ease the spasms in the bladder. It has made things slightly more comfortable, but it has reduced the urgency at which I go. On the plus side...my pee now looks like Orange flavored Kool-Aid. Thats fun!
Sorry for all of the potty talk, but thats pretty much been my day. If I had something more interesting to share, then I definitely would have. One of the tough things about cancer treatment is that it effects every part and every system of your body. You also have very little control over when these different problems might arise. While this latest ordeal is the most upsetting to me since the transplant, at least the doctors feel confident that there are no major problems. Hopefully tommorow is a more boring day here at NIH. Until then...thank you all for the love, thoughts, and blessings.
The nurse returned and said there were red blood cells in the urine, but that another sample would be needed. No problem...I'm going every 15 minutes, so I'll have that sample in no time. She took the sample, but unfortunately results would not be back until the morning. So sleep did not come in long spurts last night and I awoke very tired.
When the doctors came on rounds they explained that there were more red blood cells than white blood cells, which means it is likely hemorrhagic cystitis. That was the condition that I've been warned about before taking cytoxan. While I was hydrated well and received messna to help protect the lining of my bladder while undergoing the cytoxan infusions, I had diarhea the previous two days. The diarhea left me dehydrated, and I wasn't passing urine at the rate I should have been. So the toxins from the cytoxan that still remain in the body, broke down the interior bladder walls which led to this condition.
The doctors shared that there isn't a cure for this, but that it will most likely return to normal in several days. Right now I have been given a drug to help ease the spasms in the bladder. It has made things slightly more comfortable, but it has reduced the urgency at which I go. On the plus side...my pee now looks like Orange flavored Kool-Aid. Thats fun!
Sorry for all of the potty talk, but thats pretty much been my day. If I had something more interesting to share, then I definitely would have. One of the tough things about cancer treatment is that it effects every part and every system of your body. You also have very little control over when these different problems might arise. While this latest ordeal is the most upsetting to me since the transplant, at least the doctors feel confident that there are no major problems. Hopefully tommorow is a more boring day here at NIH. Until then...thank you all for the love, thoughts, and blessings.
Saturday, December 20, 2008
Day +2
Today was day +2 after transplant, and thankfully I didn't have any vomiting or nausea. Thats something to be thankful for. Unfortunately a few other minor nuisances crept up. Diarhea continues to be a problem, a headache developed during the middle of the day, and I'm waiting for a doctor to come prescribe me medicine for what might be a urinary tract infection. My body isn't failing me, but these issues let me know that it is still weak at this time.
The headache is a sharp persistant pain in the top and back of my head. I was given oxycodone for it, which seemed to help but not completely alleviate the headache. I've been having trouble trying to sleep and took another dose of oxycodone to try and ease the pain enough to sleep. I think the headache is being caused by the Tacrolimus. One of its listed side effects is headache, and I haven't felt any the previous 4 days I have been on it. However the doctors let me know that my tacrolimus level is at 16, when they want it to be between 5 and 10. The elevated levels in my system are probably whats causing this. I have been off of the tacrolimus since the afternoon and won't get back on it until the morning. Hopefully the headache eases up before then.
On the home front, Kate took Isaiah to the Doctor, who suspects he has strep throat. He is now on antibiotics for that, but probably won't make it to the hospital to visit for a few days. Its hard not to see Isaiah and Kate because of that, but luckily for us one of the research nurses at NIH lent us a webcam of hers when she heard my family mention that we were looking into that. So despite having to stay at home, Isaiah and Kate were able to visit with me on the webcam a couple of times today.
Well other than what I've mentioned, there was a lot of waiting around today. My white blood counts are still dropping, making me more at risk of infection. Although the doctors seem to be pleased with the progress I'm making, so I'm still up beat.
The headache is a sharp persistant pain in the top and back of my head. I was given oxycodone for it, which seemed to help but not completely alleviate the headache. I've been having trouble trying to sleep and took another dose of oxycodone to try and ease the pain enough to sleep. I think the headache is being caused by the Tacrolimus. One of its listed side effects is headache, and I haven't felt any the previous 4 days I have been on it. However the doctors let me know that my tacrolimus level is at 16, when they want it to be between 5 and 10. The elevated levels in my system are probably whats causing this. I have been off of the tacrolimus since the afternoon and won't get back on it until the morning. Hopefully the headache eases up before then.
On the home front, Kate took Isaiah to the Doctor, who suspects he has strep throat. He is now on antibiotics for that, but probably won't make it to the hospital to visit for a few days. Its hard not to see Isaiah and Kate because of that, but luckily for us one of the research nurses at NIH lent us a webcam of hers when she heard my family mention that we were looking into that. So despite having to stay at home, Isaiah and Kate were able to visit with me on the webcam a couple of times today.
Well other than what I've mentioned, there was a lot of waiting around today. My white blood counts are still dropping, making me more at risk of infection. Although the doctors seem to be pleased with the progress I'm making, so I'm still up beat.
Thursday, December 18, 2008
Day +1
Today is day +1 in my transplant calendar. It feels nice to be on the positive side and moving forward. The day started out alright compared to the last few days. I was able to eat some food in the morning without throwing up or getting nauseous. That lasted all day without much going on. I received Methotrexate for the 1st time, which is an anti-cancer drug which is being used to help suppress my immune system while the new cells engraft in my body. I got this through IV and it last about 15 minutes. That was the only time I had to be hooked up to the IV pole, with just my 24 hour Tacrolimus infusion working off of the portable pump. So to kill time I spent a few hours playing RACKO with my mom, followed by a good visit from our friend Cailin. That brought me to dinner time, where I courageously ate what was in front of me and felt no problems. About a half hour later a nurse gave me my evening pills, and after a hiccup and a cough, I threw up the pills and everything I had just eaten for dinner. That was disappointing. I felt like I had gotten through the whole day without any nausea, but it got me right as the day was winding down. OH well...I felt fine after that, and welcomed a visit from Kate's cousin Sean. He wanted to dress up in the yellow coats reserved for patients with contact restrictions, but the nurses yanked the coat off of him. He brought some DVDs that will surely help to spell the boredom of a prolonged hospital stay. All around it wasn't a bad day. The doctors gave nothing but good reports on my progress, so there is nothing to worry about for the time being. Heres to a boring yet vomit free day tommorow!
DAY 0 Transplant Day
I was too exhausted last night to write an entry on my re-birthday. The day started out poorly again, as I puked in the toilet shortly after waking up. Morning sickness isn't just for pregnant women, but cancer patients as well. The nausea died down again after that incident, but I just didn't feel like eating much most of the day.
The day went quickly with the help of some naps in the morning and afternoon. During one of my boughts of consciousness the nurse who coordinates the transplants came in and let me know the transplant would take place at some time between four and six. So at three o'clock I was awake and ready to get going. About that time I was given another message that the transplant would arrive at 5:30. So I got around to ordering dinner, and pacing the room anxiously when it arrived because my stomach wasn't quite ready for it.
At one point I decided to take a lap around the hallways to try and ease myself. As I head out the door I see a couple of familiar faces standing next to the nurses station with one person I didn't recognize holding a Playmate cooler. I knew the new cells were in that cooler, just like how they transport organs in movies or tv. So I made my walk a quick one, and layed down to get ready for the transplant.
When they brought the cells in for the transplant, they let us know that they had harvested enough cells from the donor that they could have done two full transplants. Thats great news because they are able to freeze the extra cells and could potentially use them later to give my new immune system a boost if necessary. I also take it as good news, becauses if my donor could produce that many cells for donation, then he must be pretty healthy. For the actual transplant I would be receiving five million cells. I've read online about that being the optimal amount for transplant recipients, but I've also heard about people going through with transplants with as little as 2 million. So all of the signs I've received about the donated cells seem to be in my favor.
The transplant is pretty much like a blood transfusion. The bag of cells looked like watered-down blood. It was still red, but more of a creamy tomato soup red instead of a dark crimson color. I was able to lay back and relax as the cells were infused over the course of a half an hour. There were not any notable signs of flushing, fever, or any other type of reaction. So while the I've spent so much time getting ready for this bone marrow transplant, the procedure was in fact quite ordinary and unexciting.
While my parents and Kate had been with me most of the day, Isaiah arrived with his Godmama and Monkey Matt. Most people probably aren't aware of Monkey Matt, but thats what he gets called around Isaiah. After they arrived some of the nurses from the floor brought over a cake and sang happy birthday to celebrate my re-birthday. I was feeling really good at this point and we were able to celebrate in a laid back atmosphere.
So the new cells are flowing through my body right now, and hopefully latching on to the marrow. The next few days might remain kind of boring, but the big news will come in a week or so when tests are done to see how well the new cells have taken over. For now...all is good. And I'm thankful for all the thoughts and prayers I've received while going through this.
The day went quickly with the help of some naps in the morning and afternoon. During one of my boughts of consciousness the nurse who coordinates the transplants came in and let me know the transplant would take place at some time between four and six. So at three o'clock I was awake and ready to get going. About that time I was given another message that the transplant would arrive at 5:30. So I got around to ordering dinner, and pacing the room anxiously when it arrived because my stomach wasn't quite ready for it.
At one point I decided to take a lap around the hallways to try and ease myself. As I head out the door I see a couple of familiar faces standing next to the nurses station with one person I didn't recognize holding a Playmate cooler. I knew the new cells were in that cooler, just like how they transport organs in movies or tv. So I made my walk a quick one, and layed down to get ready for the transplant.
When they brought the cells in for the transplant, they let us know that they had harvested enough cells from the donor that they could have done two full transplants. Thats great news because they are able to freeze the extra cells and could potentially use them later to give my new immune system a boost if necessary. I also take it as good news, becauses if my donor could produce that many cells for donation, then he must be pretty healthy. For the actual transplant I would be receiving five million cells. I've read online about that being the optimal amount for transplant recipients, but I've also heard about people going through with transplants with as little as 2 million. So all of the signs I've received about the donated cells seem to be in my favor.
The transplant is pretty much like a blood transfusion. The bag of cells looked like watered-down blood. It was still red, but more of a creamy tomato soup red instead of a dark crimson color. I was able to lay back and relax as the cells were infused over the course of a half an hour. There were not any notable signs of flushing, fever, or any other type of reaction. So while the I've spent so much time getting ready for this bone marrow transplant, the procedure was in fact quite ordinary and unexciting.
While my parents and Kate had been with me most of the day, Isaiah arrived with his Godmama and Monkey Matt. Most people probably aren't aware of Monkey Matt, but thats what he gets called around Isaiah. After they arrived some of the nurses from the floor brought over a cake and sang happy birthday to celebrate my re-birthday. I was feeling really good at this point and we were able to celebrate in a laid back atmosphere.
So the new cells are flowing through my body right now, and hopefully latching on to the marrow. The next few days might remain kind of boring, but the big news will come in a week or so when tests are done to see how well the new cells have taken over. For now...all is good. And I'm thankful for all the thoughts and prayers I've received while going through this.
Tuesday, December 16, 2008
Day -1
Wow...plenty of guestbook signatures today, which was great to read. Thanks for all of the support and prayers. As I type right now, I am feeling about as good as I have since I've been in the hospital. I'm showered(which doesn't happen as often as I'd like when I'm constantly connected to IVs), eating dinner(salad and hummus for those who are interested), and I don't have any pains, nausea or discomfort for the first time in a few days. I was also able to sleep fairly well last night and got in a nap this afternoon after a visit from Kate and Isaiah.
Unfortunately the day didn't start out so hot. I woke up feeling kind of nauseous, but thought things had settled down when I had some yogurt. I wasn't feeling up to eating much solid food at that point. I lay down for a bit, and when I stood up and coughed, I realized the yogurt wasn't going to stay down. So I had a pretty good fit of vomiting to start my day, but the nausea ceased after that.
Aside from the early morning things have gone well though. I've napped, which always helps time fly by, and the day has been enjoyable. I realized recently that its been a week in the hospital for me already. It has certainly felt long at times, but overall it hasn't been too bad. I'd much rather be at home with Isaiah and Kate though.
Tommorow will be the day of transplant, and I've been told it will happen sometime in the late afternoon. Since the donor is unrelated, they don't conduct the procedure at the same hospital. So the exact time is unknown while they wait for the bone marrow cells to be transported to NIH. I'm pretty excited. I'm feeling great right now, and I don't have any infections that could create complications right now. My neutrophil count is under 100 right now, so my immune system is close to gone. The drugs that are used to help engraft the new bone marrow cells are immunosuppressants, so I'll likely be at risk of infection for 7-10 days after the transplant. However, the lack of problems so far is a good sign of things to come.
Unfortunately the day didn't start out so hot. I woke up feeling kind of nauseous, but thought things had settled down when I had some yogurt. I wasn't feeling up to eating much solid food at that point. I lay down for a bit, and when I stood up and coughed, I realized the yogurt wasn't going to stay down. So I had a pretty good fit of vomiting to start my day, but the nausea ceased after that.
Aside from the early morning things have gone well though. I've napped, which always helps time fly by, and the day has been enjoyable. I realized recently that its been a week in the hospital for me already. It has certainly felt long at times, but overall it hasn't been too bad. I'd much rather be at home with Isaiah and Kate though.
Tommorow will be the day of transplant, and I've been told it will happen sometime in the late afternoon. Since the donor is unrelated, they don't conduct the procedure at the same hospital. So the exact time is unknown while they wait for the bone marrow cells to be transported to NIH. I'm pretty excited. I'm feeling great right now, and I don't have any infections that could create complications right now. My neutrophil count is under 100 right now, so my immune system is close to gone. The drugs that are used to help engraft the new bone marrow cells are immunosuppressants, so I'll likely be at risk of infection for 7-10 days after the transplant. However, the lack of problems so far is a good sign of things to come.
Monday, December 15, 2008
Day -2
Today was one of my two days of rest before the transplant day. It might not have been extremely relaxing or restful, but it was easier than the other days. The Tacrolimus drug I am on is connected to a portable IV pump, so at 2:00 I was able to get off the IV pole and actually walk around a bit more freely. I have to get hooked back to the IV pole every once in a while for other drugs, but I now have slightly greater mobility.
Since I'm not receiving supplemental IV fluids right now, I'm also heading to the bathroom a lot less. Thats a very welcome change! Unfortunately my appetite still sucks. I get hungry, but as soon as food is in front of me I get a feeling like I need to walk away. Chicken noodle soup, yogurt, and ice pops are the only thing that I consistently seem to be eating. Its calories...but I really wouldn't call it eating.
Father Bob from Catholic called me today and he always seems shocked at how positive I am. Well Father...what else would you have me do? Its also easy to stay positive knowing that in addition to my family, I have a lot of people supporting us and praying for us. For anybody reading this from the email that Father Bob helped organize and send out...Kate and I are extremely thankful for your help and prayers. And for everybody who reads...I frequently look at the guestbook messages you write. I'm appreciative of everybody's prayers and support and please keep it coming.
Alright...time to fight insomnia and try to get to sleep. I need to enjoy tommorow, since it will be my last full day with my own immune system in place.
Since I'm not receiving supplemental IV fluids right now, I'm also heading to the bathroom a lot less. Thats a very welcome change! Unfortunately my appetite still sucks. I get hungry, but as soon as food is in front of me I get a feeling like I need to walk away. Chicken noodle soup, yogurt, and ice pops are the only thing that I consistently seem to be eating. Its calories...but I really wouldn't call it eating.
Father Bob from Catholic called me today and he always seems shocked at how positive I am. Well Father...what else would you have me do? Its also easy to stay positive knowing that in addition to my family, I have a lot of people supporting us and praying for us. For anybody reading this from the email that Father Bob helped organize and send out...Kate and I are extremely thankful for your help and prayers. And for everybody who reads...I frequently look at the guestbook messages you write. I'm appreciative of everybody's prayers and support and please keep it coming.
Alright...time to fight insomnia and try to get to sleep. I need to enjoy tommorow, since it will be my last full day with my own immune system in place.
Sunday, December 14, 2008
Day -3
Another day down at NIH. I didn't sleep well last night, and this morning was the first time I really started feeling down. It started when I woke up too early and progressed at 6 AM when I got nauseous and dry heaved into a trash can. The nausea subsided right after that incident, but I just wasn't feeling great most of the morning. The good news is that I had a nice long visit with Kate, Isaiah, my parents, Kate's mom, and Kate's sister. They came early in the afternoon and stayed pretty much until evening. That really picked me up and I am feeling a lot better right now.
Another positive from today was that it was my last day of Cytoxan and Fludarabine. I'm done with chemo...at least for now! The end of the chemo means that I started taking the drugs to help prevent GVHD. The Sirolimus was a bunch of small pills that had a sweet candy coating on it. Not bad to swallow. The Tacrolimus is given to me IV, and it is a 24 hour infusion despite being in a tiny little bag. The rate it infuses is just 4.2 ml per hour, so it must be something potent. The doctor said it could cause tremors or headaches, but I haven't seen any signs of that yet.
Hopefully with the chemotherapy done the next two days will be better. Who knows how they will be, but at least I have my family's support to help me get through this. It truly would be a struggle without their visits to get through this, because a hospital can be a depressing place.
Another positive from today was that it was my last day of Cytoxan and Fludarabine. I'm done with chemo...at least for now! The end of the chemo means that I started taking the drugs to help prevent GVHD. The Sirolimus was a bunch of small pills that had a sweet candy coating on it. Not bad to swallow. The Tacrolimus is given to me IV, and it is a 24 hour infusion despite being in a tiny little bag. The rate it infuses is just 4.2 ml per hour, so it must be something potent. The doctor said it could cause tremors or headaches, but I haven't seen any signs of that yet.
Hopefully with the chemotherapy done the next two days will be better. Who knows how they will be, but at least I have my family's support to help me get through this. It truly would be a struggle without their visits to get through this, because a hospital can be a depressing place.
Saturday, December 13, 2008
Day -4
Today was my third day of pre-transplant chemotherapy with the fludarabine and cytoxan. Just one more day of chemo to go and then a few days of rest. Well...not really rest. I'll start Tacrolimus and Sirilinus(I think I got the spelling right...don't feel like checking the protocol right now) tommorow. Those are the drugs to help prevent Graft Versus Host Disease. The tacrolimus is a 24 hour infusion, and I'll take that through the IV until I'm discharged. So despite being done with the chemotherapy, I don't get a reprieve from the IV situation.
Everything today went pretty well. The doctors had little to comment on, which is of course a good thing. I am neutropenic now, with my neutrophil count below 1000. It was 1600 the day before, so it is heading in the right direction. This is nothing since I've been dealing with neutropenia each cycle of EPOCH that I received this year.
One thing that has been a nuisance is the use of the drug lasix. I'm given that drug about twice a day...usually with my chemotherapy and when I go to sleep at night. Lasix is a diuretic, and I'm receiving it so I pass more urine and don't get the bleeding in the bladder that is a side effect of taking cytoxan. The lasix makes me have to head to the toilet every 10 to 20 minutes for about 2 straight hours. I know its helping me out, but its a pain when all I want to do is sleep, and I have a constant feeling of having a full bladder. Its not fun to deal with, but the alternative, blood in the urine, sounds worse.
Everything today went pretty well. The doctors had little to comment on, which is of course a good thing. I am neutropenic now, with my neutrophil count below 1000. It was 1600 the day before, so it is heading in the right direction. This is nothing since I've been dealing with neutropenia each cycle of EPOCH that I received this year.
One thing that has been a nuisance is the use of the drug lasix. I'm given that drug about twice a day...usually with my chemotherapy and when I go to sleep at night. Lasix is a diuretic, and I'm receiving it so I pass more urine and don't get the bleeding in the bladder that is a side effect of taking cytoxan. The lasix makes me have to head to the toilet every 10 to 20 minutes for about 2 straight hours. I know its helping me out, but its a pain when all I want to do is sleep, and I have a constant feeling of having a full bladder. Its not fun to deal with, but the alternative, blood in the urine, sounds worse.
Friday, December 12, 2008
Day -5
Today was an easier day than yesterday. I received the chemotherapy exactly like yesterday, but there was a lot less going on without having a transfusion or extra magnesium and potasium put into my system. I was able to move around a bit and felt pretty good.
The doctors said my white blood cells actually went up a bit overnight, which I attribute to the blood transfusion. Decreasing the white blood cells is one of the main points of this pre-transplant chemo regimen. However, it takes a little more time for those to drop, so the doctors weren't worried. Everything seems to be going ok with the process for now.
However, there was one little accident today. As I was heading into the bathroom, I hear something hit the floor. I looked down and saw my IV was on the ground, and there was blood dripping on the ground. I had a quick "What the hell?" type of thought, before realizing that the blood was coming out of one of the three exterior tubes from my Hickman line.
My mother was in the room at the time, and I asked her to get the nurse. She came quickly towards the bathroom, and I had to tell my mom not to come near me but get the nurse. Luckily there was a nurse right outside of the room who was able to help me stop the blood from dripping and get everything back to normal. It wasn't that big of a deal overall, but it was kind of crazy for a moment to see blood quickly gathering on the floor and not knowing what was going on. That little ordeal helped to break the monotony of the day up. Nothing else new to report...still on track and staying focused on what lies ahead.
The doctors said my white blood cells actually went up a bit overnight, which I attribute to the blood transfusion. Decreasing the white blood cells is one of the main points of this pre-transplant chemo regimen. However, it takes a little more time for those to drop, so the doctors weren't worried. Everything seems to be going ok with the process for now.
However, there was one little accident today. As I was heading into the bathroom, I hear something hit the floor. I looked down and saw my IV was on the ground, and there was blood dripping on the ground. I had a quick "What the hell?" type of thought, before realizing that the blood was coming out of one of the three exterior tubes from my Hickman line.
My mother was in the room at the time, and I asked her to get the nurse. She came quickly towards the bathroom, and I had to tell my mom not to come near me but get the nurse. Luckily there was a nurse right outside of the room who was able to help me stop the blood from dripping and get everything back to normal. It wasn't that big of a deal overall, but it was kind of crazy for a moment to see blood quickly gathering on the floor and not knowing what was going on. That little ordeal helped to break the monotony of the day up. Nothing else new to report...still on track and staying focused on what lies ahead.
Thursday, December 11, 2008
Day -6
Today was my first day of pre-transplant chemo, and it truly was a busy day. I've had no less than two IVs running into my sytem since this morning, and as many as 5 different drugs or supplements pumping into me at one time. The pole they use to hang the IVs from is full and the tubes running from the pumps to my body are pretty confusing. However, the nurses have been through this before and everything has been pretty smooth in my opinion.
I received the Fludarabine and Cytoxin in the late morning. No problems there. I've gotten a little bit of nausea recently, but its not to the point where I think I'm going to throw up. Just a little uncomfortable. I'm also get my anti-nausea medication through an IV, and that is running most of the time. My hemoglobin was also down to 7.7 this afternoon, so I got a two unit transfusion of blood in order to bring that up. I didn't really notice the signs of having really low blood oxygen, but then again I'm not really exerting myself here in the hospital.
Today was also Isaiah's first visit to NIH. He appeared a little apprehensive about a new place when he first walked in, but he quickly made himself at home. He had a few questions about what was going on, but he has already seen Daddy go through enough chemo to understand what all the IVs are for. I had enough energy to spend time with him and fit in two games of Candyland. Probably haven't played that game since Elementary School.
Right now I am tired and about ready to fall asleep. So hopefully I have the same boring news to report tommorow! Thanks to everybody who has offered their prayers and support. It is definitely helping!
I received the Fludarabine and Cytoxin in the late morning. No problems there. I've gotten a little bit of nausea recently, but its not to the point where I think I'm going to throw up. Just a little uncomfortable. I'm also get my anti-nausea medication through an IV, and that is running most of the time. My hemoglobin was also down to 7.7 this afternoon, so I got a two unit transfusion of blood in order to bring that up. I didn't really notice the signs of having really low blood oxygen, but then again I'm not really exerting myself here in the hospital.
Today was also Isaiah's first visit to NIH. He appeared a little apprehensive about a new place when he first walked in, but he quickly made himself at home. He had a few questions about what was going on, but he has already seen Daddy go through enough chemo to understand what all the IVs are for. I had enough energy to spend time with him and fit in two games of Candyland. Probably haven't played that game since Elementary School.
Right now I am tired and about ready to fall asleep. So hopefully I have the same boring news to report tommorow! Thanks to everybody who has offered their prayers and support. It is definitely helping!
Wednesday, December 10, 2008
Day -7
I'm wearing a gown right now which makes me feel a bit more like a patient than yesterday. I got the Hickman line placed this morning, and my neck is incredibly sore. That line goes into the jugular vein right above the collarbone. The procedure was pretty simple, but there is pain when I try to move my neck or swallow. Its not too awful, but it is a nuisance. After coming out of my vein though, it is tunnelled under the skin and comes out of my body in the chest under the collar line. The lumens that hang down where I get hooked up for IVs are pretty obscure at that position, so it might actually be more comfortable than the PICC line. One of the nurses around here said that the pain will be worse tommorow before getting better, so thats something to look forward to.
I haven't started hydrating yet, but that should come along shortly. After doing that tonight, I'll be ready for the conditioning regimen of chemotherapy tommorow morning. I've just started noticing some of my hair coming back in, and this will probably delay any hair growth for a few more weeks. Oh well...I've gotten used to being bald and hairless.
So most of today has been waiting around. Kate was my only visitor today, and I expect more people to come in tommorow. I'm not experiencing any loneliness, home sickness, cabin fever, or depression over the hospital food yet. Things are mostly boring so far, and I figure thats a good thing.
I haven't started hydrating yet, but that should come along shortly. After doing that tonight, I'll be ready for the conditioning regimen of chemotherapy tommorow morning. I've just started noticing some of my hair coming back in, and this will probably delay any hair growth for a few more weeks. Oh well...I've gotten used to being bald and hairless.
So most of today has been waiting around. Kate was my only visitor today, and I expect more people to come in tommorow. I'm not experiencing any loneliness, home sickness, cabin fever, or depression over the hospital food yet. Things are mostly boring so far, and I figure thats a good thing.
Tuesday, December 9, 2008
Day -8
Today was a good day despite traffic tripling or quadrupling the time it usually takes to get from home to NIH. I met with plenty of people today about the transplant, but the most important meeting was with the lead transplant doctor. The feedback from him was that, other than cancer obviously, I am in excellent health. Supposedly I have about the best kidneys he has ever seen, and my heart, lungs, and other organs are doing great also! This is great news because it decreases the odds of side effects and of having a positive outcome from the transplant.
I feel like I had a good understanding of the protocol before meeting with him, and the discussion we had was reassuring. He spoke for a good amount of time regarding Graft Versus Host Disease (GVHD). That is a disease that affects tranplant recipients as their new cells can become harmful to the existing cells. Apparently about 50% of transplant patients get acute GVHD. That is a GVHD occurence within the first 100 days after transplant. There is also chronic GVHD which occurs further down the road, which affects about 50% as well. The odds of having chronic GVHD are less for those who don't get acute GVHD. I'm hoping to avoid both conditions, because they don't necessarily sound comfortable from what I've read.
The parts of the body that GVHD affect most often are the skin, GI tract, and the liver. The risk of GVHD is that with a suppressed immune system, transplant patients with GVHD aren't prepared to deal with the potential infection that might come along with GVHD. It does have potential for serious problems, but most people with GVHD have their symptoms successfully treated with medication.
Right now I find myself in my hospital room at NIH on my first night away from home. Its kind of odd tonight because there isn't anything going on and nothing planned. I'm just hanging out waiting for tommorow. In the morning I'll have the Hickman line placed in my chest. I've gotten used to having PICC lines placed in my arms to receive chemotherapy, but I fell it will be weird to have a catheter in my chest.
After the line placement, I'll have time to relax for most of the day before beginning hydration in the evening. I'll get IV hydration because one of the two drugs I'll get this week can be especially hard on the bladder. The extra hydration will ensure I'm going to the bathroom often, and preventing bleeding on the walls of my bladder. Yeah...that sounds uncomfortable, so I have no problem peeing often to avoid that.
I found out today that the actual day of transplant will be the 17th of December. That means today is Day -8. With the transplants the negative days are counted down until your transplant day...Day 0, which I've heard others call their re-birthday or something like that. Now I am about ready to get some sleep and to move on to day -7. Its kind of nice to count the days with this process. Each one will just bring me one step closer to being done with this disease forever!
I feel like I had a good understanding of the protocol before meeting with him, and the discussion we had was reassuring. He spoke for a good amount of time regarding Graft Versus Host Disease (GVHD). That is a disease that affects tranplant recipients as their new cells can become harmful to the existing cells. Apparently about 50% of transplant patients get acute GVHD. That is a GVHD occurence within the first 100 days after transplant. There is also chronic GVHD which occurs further down the road, which affects about 50% as well. The odds of having chronic GVHD are less for those who don't get acute GVHD. I'm hoping to avoid both conditions, because they don't necessarily sound comfortable from what I've read.
The parts of the body that GVHD affect most often are the skin, GI tract, and the liver. The risk of GVHD is that with a suppressed immune system, transplant patients with GVHD aren't prepared to deal with the potential infection that might come along with GVHD. It does have potential for serious problems, but most people with GVHD have their symptoms successfully treated with medication.
Right now I find myself in my hospital room at NIH on my first night away from home. Its kind of odd tonight because there isn't anything going on and nothing planned. I'm just hanging out waiting for tommorow. In the morning I'll have the Hickman line placed in my chest. I've gotten used to having PICC lines placed in my arms to receive chemotherapy, but I fell it will be weird to have a catheter in my chest.
After the line placement, I'll have time to relax for most of the day before beginning hydration in the evening. I'll get IV hydration because one of the two drugs I'll get this week can be especially hard on the bladder. The extra hydration will ensure I'm going to the bathroom often, and preventing bleeding on the walls of my bladder. Yeah...that sounds uncomfortable, so I have no problem peeing often to avoid that.
I found out today that the actual day of transplant will be the 17th of December. That means today is Day -8. With the transplants the negative days are counted down until your transplant day...Day 0, which I've heard others call their re-birthday or something like that. Now I am about ready to get some sleep and to move on to day -7. Its kind of nice to count the days with this process. Each one will just bring me one step closer to being done with this disease forever!
Monday, December 8, 2008
Monday Ramblings
It hit me this morning that tonight will likely be my last night at home with Isaiah and Kate in quite a long time. Thats a little bit of a depressing thought, but its not like any of us have a choice in that.
The plan is for me to be admitted Tuesday night with my line placed Wednesday morning and the pre-transplant chemo starting later that day. The craziness really is about to start.
Right now I'm on the 13th floor of NIH's Clinical Center looking out the window at a view of the Montgomery County landscape. Lots of trees with no leaves and plenty of buildings underneath. Thats the image. I just had a bone marrow biopsy, which is a notoriously painful procedure, but it wasn't too bad. I got a comment from the doctor about my young bones. I figure thats a compliment, but it means he has to drill a bit harder to access the bone marrow in my hip. I've got some time to kill right now, and on the schedule for today is a meeting with the Pain and Palliative Care team and a nutritional consult. I'm hoping they reccomend a strict adherence to a red meat and beer diet, but I don't have my hopes up for that.
The plan is for me to be admitted Tuesday night with my line placed Wednesday morning and the pre-transplant chemo starting later that day. The craziness really is about to start.
Right now I'm on the 13th floor of NIH's Clinical Center looking out the window at a view of the Montgomery County landscape. Lots of trees with no leaves and plenty of buildings underneath. Thats the image. I just had a bone marrow biopsy, which is a notoriously painful procedure, but it wasn't too bad. I got a comment from the doctor about my young bones. I figure thats a compliment, but it means he has to drill a bit harder to access the bone marrow in my hip. I've got some time to kill right now, and on the schedule for today is a meeting with the Pain and Palliative Care team and a nutritional consult. I'm hoping they reccomend a strict adherence to a red meat and beer diet, but I don't have my hopes up for that.
Friday, December 5, 2008
Transplant Still On
I had a CT scan this morning and met with the transplant doctor afterwards. The results of the CT were fairly positive after hearing what we did yesterday. There are three lesions of residual cancer that the doctors are following. From the CT scan today they observed that two of the lesions have held steady in size since the last PET scan in October, and that the third has grown by about 10%. Its obviously not great news that one of them has decided to regrow, and that further shrinkage didn't occur with the others. However, the 10% growth will not keep me from proceeding with the bone marrow transplant. So I am still on schedule to be admitted next week and have the transplant mid December.
Its a bit frustrating to me, because the prognosis for success with the transplant decreases with these results. If I had been in remission, I would have been lableled as having excellent chemo-sensitivity. With the regrowth, my chemo-sensitivity is only borderline. While the impression I was given before this news was that the bone marrow transplant would help guarantee a cure, now its not looked at in that way. It will hopefully still be a positive to get the new immune system, but I'll probably need some other type of treatment in the future as well. Oh well.
At least the plans that were made for the transplant aren't taken away, and I know what I'll be facing in the near future. This is another reminder that no person is in control on this journey, and I just have to do my best to enjoy the ride.
Its a bit frustrating to me, because the prognosis for success with the transplant decreases with these results. If I had been in remission, I would have been lableled as having excellent chemo-sensitivity. With the regrowth, my chemo-sensitivity is only borderline. While the impression I was given before this news was that the bone marrow transplant would help guarantee a cure, now its not looked at in that way. It will hopefully still be a positive to get the new immune system, but I'll probably need some other type of treatment in the future as well. Oh well.
At least the plans that were made for the transplant aren't taken away, and I know what I'll be facing in the near future. This is another reminder that no person is in control on this journey, and I just have to do my best to enjoy the ride.
Thursday, December 4, 2008
In Limbo
It has felt like a long week, and it just got a bit longer. Thanksgiving last week was excellent, except for the puking, coughing, and nose blowing that my family and I had to live through. It wasn't just me...but everybody at my parent's house got sick. It was still a good time to be around family, but it could have been a lot better.
Moving on to this week, I finally had my last day at work on Wednesday. With my cold in full effect, I felt drained going to work. However, I was determined to work these last three days. Its not quite sad to be leaving work for an undetermined amount of time, but more frustrating. I won't mind the break from working all day while going through chemotherapy. That was tough. However, not knowing when I'll be back annoys me. I received a lot of love from my coworkers this week, which is always reassuring. I wouldn't mind being a fly on the wall to see the chaos that might go on in my class when I'm not there. Hopefully for everyone involved it will be minimal.
So today was a long day at NIH with a PET scan, several other tests, and my clinic appointment. Usually NIH has been very efficient in terms of appointments, but today we had to wait longer than we would have liked. Some excellent news surely would have cheered my parents, Kate, and I up, but thats not quite what we got. The doctors shared that their was some increased intensity where the lesions in my chest previously were. What this means is that its possible the tumor has changed or is just not responding to chemotherapy like it was before. The cancer may be growing again, which obviously would not be a good thing. If this is the case, I would not be eligible for the bone marrow study right now. However, the doctors will not be sure if the tumor cells are growing until they see the results of a CT scan. I have a CT scan tommorow, and will meet with the transplant doctor to discuss what he sees late in the morning.
So the bone marrow transplant is not officially off, but its in doubt. We should know for sure whether or not it will happen in the near future by tommorow afternoon.
If the transplant is out of the picture for now, one of the doctors did have an idea for an experimental treatment that is taking place outside of NIH. So its good to know that the docs are thinking about other options. My mood right now is frustrated. The most emotionally difficult thing about my cancer experience is that when we have thought everything was figured out, plans seem to often change. So Kate and I aren't feeling down right now. Its obviously tough that things aren't going as we thought they would, but we just have to do whatever is best for my long term health.
I'll probably update the blog tommorow with information about the CT scan. Right now it is just time for more prayers and positive thoughts before the rest of our path is unveiled to us.
Moving on to this week, I finally had my last day at work on Wednesday. With my cold in full effect, I felt drained going to work. However, I was determined to work these last three days. Its not quite sad to be leaving work for an undetermined amount of time, but more frustrating. I won't mind the break from working all day while going through chemotherapy. That was tough. However, not knowing when I'll be back annoys me. I received a lot of love from my coworkers this week, which is always reassuring. I wouldn't mind being a fly on the wall to see the chaos that might go on in my class when I'm not there. Hopefully for everyone involved it will be minimal.
So today was a long day at NIH with a PET scan, several other tests, and my clinic appointment. Usually NIH has been very efficient in terms of appointments, but today we had to wait longer than we would have liked. Some excellent news surely would have cheered my parents, Kate, and I up, but thats not quite what we got. The doctors shared that their was some increased intensity where the lesions in my chest previously were. What this means is that its possible the tumor has changed or is just not responding to chemotherapy like it was before. The cancer may be growing again, which obviously would not be a good thing. If this is the case, I would not be eligible for the bone marrow study right now. However, the doctors will not be sure if the tumor cells are growing until they see the results of a CT scan. I have a CT scan tommorow, and will meet with the transplant doctor to discuss what he sees late in the morning.
So the bone marrow transplant is not officially off, but its in doubt. We should know for sure whether or not it will happen in the near future by tommorow afternoon.
If the transplant is out of the picture for now, one of the doctors did have an idea for an experimental treatment that is taking place outside of NIH. So its good to know that the docs are thinking about other options. My mood right now is frustrated. The most emotionally difficult thing about my cancer experience is that when we have thought everything was figured out, plans seem to often change. So Kate and I aren't feeling down right now. Its obviously tough that things aren't going as we thought they would, but we just have to do whatever is best for my long term health.
I'll probably update the blog tommorow with information about the CT scan. Right now it is just time for more prayers and positive thoughts before the rest of our path is unveiled to us.
Subscribe to:
Posts (Atom)