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.
Friday, November 21, 2008
Transfusion Tomorrow
This was a quick week at work. It was fast paced and busy, which is always a nice feeling. I've felt like I've had a lot of energy, but I just got a call that my hemoglobin level is 7.9. Usually when my hemoglobin level has been that low I've felt either short of breath or had headaches, so I'm a bit surprised its that low. So it looks like I'll head into NIH tommorow for another transfusion. This is the third straight cycle of EPOCH-CR that I'll get a blood transfusion because of my red blood counts, so it is expected and pretty routine.
It might seem like a drain to spend a Saturday afternoon in the hospital, but its definitely best for me. I've been debating what I should do tommorow, and the options probably wouldn't have been the safest for a neutropenic chemo patient. Tommorow is Catholic's last football game of the year, and I would love to be out there watching them. Unfortunately with highs not expected to get out of the 30's, this would have been a poor choice. This weekend is also the beginning of Thanksgiving week which means Mary, Mya, and Reed will be coming up from Florida. Since Mary and Kate are planning on having a fun day on their own tommorow, I could spend a lot of time with my lil relatives. Unfortunately Isaiah visited the doctor today and was put on antibiotics. So while playing with the lil ones sounds like a fun time, being around my sick kid and a couple of more toddlers probably wouldn't be great either. So I guess I'll just suck it up tomorrow, grab a book, and stay out of harm's way.
It might seem like a drain to spend a Saturday afternoon in the hospital, but its definitely best for me. I've been debating what I should do tommorow, and the options probably wouldn't have been the safest for a neutropenic chemo patient. Tommorow is Catholic's last football game of the year, and I would love to be out there watching them. Unfortunately with highs not expected to get out of the 30's, this would have been a poor choice. This weekend is also the beginning of Thanksgiving week which means Mary, Mya, and Reed will be coming up from Florida. Since Mary and Kate are planning on having a fun day on their own tommorow, I could spend a lot of time with my lil relatives. Unfortunately Isaiah visited the doctor today and was put on antibiotics. So while playing with the lil ones sounds like a fun time, being around my sick kid and a couple of more toddlers probably wouldn't be great either. So I guess I'll just suck it up tomorrow, grab a book, and stay out of harm's way.
Tuesday, November 18, 2008
No More EPOCH
I came home from NIH today free from my PICC line and hopefully done with EPOCH-CR for the rest of my life. WOOHOO. Celebrate!
Its a strange feeling though. I remember walking out of NIH last January with Kate feeling incredibly happy and positive when I had my sixth PICC line pulled. At that point we thought I was done with chemotherapy for good, and only had to wait for the great news that we ended up receiving at the end of the month. I was told I was in remission, and we didn't expect to be going through this again. Last January it was definitely a different, and more joyous celebration than what we are feeling today.
I'm happy today. 12 rounds of this chemotherapy is more than anybody should have to deal with, but it has been my life for the last fourteen months. I also feel confident that on December 4th when I have my next PET scan, that the doctors will tell me once again that my cancer is in remission. However, my experience has shown me that remission doesn't guarantee anything. Remission doesn't mean a clean bill of health, and I'll have to be prepared for any more obstacles that get put in my way.
The other big difference is that when I left NIH on January 31, 2008, my only plan was to return in three months for a CT scan and a checkup. After my checkup on December 4th, I'll be back at NIH the very next day getting ready for my bone marrow transplant. That weekend should hopefully be full of fun, because the plan is for me to begin my inpatient stay on the 10th or 11th of December. That will be a crazy time in my family's life. As much as we feel prepared for that time coming up, its going to be hard to deal with when it hits. Hopefully the transplant will be a huge success, which will only make the disruption of a long term hospital stay feel like a nuisance as time passes.
Its a strange feeling though. I remember walking out of NIH last January with Kate feeling incredibly happy and positive when I had my sixth PICC line pulled. At that point we thought I was done with chemotherapy for good, and only had to wait for the great news that we ended up receiving at the end of the month. I was told I was in remission, and we didn't expect to be going through this again. Last January it was definitely a different, and more joyous celebration than what we are feeling today.
I'm happy today. 12 rounds of this chemotherapy is more than anybody should have to deal with, but it has been my life for the last fourteen months. I also feel confident that on December 4th when I have my next PET scan, that the doctors will tell me once again that my cancer is in remission. However, my experience has shown me that remission doesn't guarantee anything. Remission doesn't mean a clean bill of health, and I'll have to be prepared for any more obstacles that get put in my way.
The other big difference is that when I left NIH on January 31, 2008, my only plan was to return in three months for a CT scan and a checkup. After my checkup on December 4th, I'll be back at NIH the very next day getting ready for my bone marrow transplant. That weekend should hopefully be full of fun, because the plan is for me to begin my inpatient stay on the 10th or 11th of December. That will be a crazy time in my family's life. As much as we feel prepared for that time coming up, its going to be hard to deal with when it hits. Hopefully the transplant will be a huge success, which will only make the disruption of a long term hospital stay feel like a nuisance as time passes.
Friday, November 14, 2008
Last Round of EPOCH-CR
Well I'm back at NIH getting started on my sixth round of chemotherapy this time around, twelfth in the last fourteen months, and hopefully my last. Its a good feeling to know that I will be done with the EPOCH-CR process soon, however, with the bone marrow transplant on the horizon I know that I am not yet done dealing with this disease. There will be some chemotherapy before the transplant, but I'll be done with this type of chemo in just a few days.
My clinic visit yesterday involved just the usual blood tests and a visit with the doctors. Nothing special was planned, but somewhow things were backed up and despite having a two o'clock appointment, I didn't get finished being seen until past five. It was frustrating because Kate came with me to the appointment, was there for most of the waiting, and only got to speak with the doctors for a little bit since she had to pick up Isaiah from school. My mom spent a decent amount of time getting details from the transplant doctor, and I was happy that I already had an understanding of everything he was speaking about. I'm feeling ready for the whole bone marrow transplant procedure, but it will be the long time in the hospital and time away from family that will be the big issue to deal with. Although I'll be in the hospital over Christmas, I think that will be a good thing since it will make it easier for family to come up and visit me.
One annoying thing I noticed at NIH this morning is that they block access to internet games. I guess they use the same site-blocking for patients that they use for employees, which means I can't use mindless on-line games to help kill time. Oh well...I guess that means using my imagination to help me kill time in the hospital.
Two weeks from now will be Thanksgiving. I always have a lot to be thankful for, and it looks like it will be a packed house at my parents...should be a fun time. Three weeks from now I'll have a completed Pet Scan that should tell us there is no more noticeable disease. Another week after that and I will most likely be getting ready for my prolonged hospital stay. So things are getting busier, and I'm looking forward to getting things done and getting healthy long term.
My clinic visit yesterday involved just the usual blood tests and a visit with the doctors. Nothing special was planned, but somewhow things were backed up and despite having a two o'clock appointment, I didn't get finished being seen until past five. It was frustrating because Kate came with me to the appointment, was there for most of the waiting, and only got to speak with the doctors for a little bit since she had to pick up Isaiah from school. My mom spent a decent amount of time getting details from the transplant doctor, and I was happy that I already had an understanding of everything he was speaking about. I'm feeling ready for the whole bone marrow transplant procedure, but it will be the long time in the hospital and time away from family that will be the big issue to deal with. Although I'll be in the hospital over Christmas, I think that will be a good thing since it will make it easier for family to come up and visit me.
One annoying thing I noticed at NIH this morning is that they block access to internet games. I guess they use the same site-blocking for patients that they use for employees, which means I can't use mindless on-line games to help kill time. Oh well...I guess that means using my imagination to help me kill time in the hospital.
Two weeks from now will be Thanksgiving. I always have a lot to be thankful for, and it looks like it will be a packed house at my parents...should be a fun time. Three weeks from now I'll have a completed Pet Scan that should tell us there is no more noticeable disease. Another week after that and I will most likely be getting ready for my prolonged hospital stay. So things are getting busier, and I'm looking forward to getting things done and getting healthy long term.
Wednesday, November 5, 2008
Another Transfusion
Today was my first unplanned day off of work since school began in August. I really hate missing any time at work, but had to call out in order to get a blood transfusion today. I was starting to get short of breath while walking around, and needed a break on the stairs at work on Monday. Struggling going up two flights of stairs was an obvious sign that the chemotherapy effects me more than I like to let on. I also developed a headache over the weekend, so I had plenty of signs of anemia. My hemoglobin count on Friday had been 8.3 and it was down to 7.6 on Monday morning. Those numbers were pretty similar to the last cycle of chemotherapy, so I figure another tranfusion will probably be in the cards for my final round of EPOCH-CR. I'm feeling pretty good after the new blood was put into my system. The headache went away and I can feel the increase in energy as I walk around the house and the yard.
I've been neutropenic the last few days, which is usual during this part of each chemo cycle. However, my white blood cell counts have been lower than I can remember having. My neutrophil count was 154 yesterday, which is as low as I remember being recorded. When my blood was drawn today they were down to 16. My nurse today was worried that I was so low and pulled the curtain around where I sat, and gave me Michael Jackson style masks for covering my face when I left. At one point she asked me, "Aren't you scared?" I told her it wouldn't help anything, and thats the truth. I'm at a point where I'm susceptible to infection, but I've been able to live pretty well and avoid any major problems. As long as I stay smart about exposing myself to potential germs or bacteria, than I feel pretty confident about how I am doing.
Some of the other issues I've been having are a slight cough since the weekend, and some irritating mouth sores. Met with one of the nurse practicioners at NIH today and he set me up with a quick chest X-ray just as a precaution with the cough. I haven't heard anything back yet about the X-ray, so I'm taking no news as good news. So right now I'm getting through things and dealing with the annoyances of chemotherapy. It still sucks, but tommorow is another day. So I'll be ready for it just like usual.
I've been neutropenic the last few days, which is usual during this part of each chemo cycle. However, my white blood cell counts have been lower than I can remember having. My neutrophil count was 154 yesterday, which is as low as I remember being recorded. When my blood was drawn today they were down to 16. My nurse today was worried that I was so low and pulled the curtain around where I sat, and gave me Michael Jackson style masks for covering my face when I left. At one point she asked me, "Aren't you scared?" I told her it wouldn't help anything, and thats the truth. I'm at a point where I'm susceptible to infection, but I've been able to live pretty well and avoid any major problems. As long as I stay smart about exposing myself to potential germs or bacteria, than I feel pretty confident about how I am doing.
Some of the other issues I've been having are a slight cough since the weekend, and some irritating mouth sores. Met with one of the nurse practicioners at NIH today and he set me up with a quick chest X-ray just as a precaution with the cough. I haven't heard anything back yet about the X-ray, so I'm taking no news as good news. So right now I'm getting through things and dealing with the annoyances of chemotherapy. It still sucks, but tommorow is another day. So I'll be ready for it just like usual.
Friday, October 24, 2008
5th Cycle Starts
Well its on to my 5th cycle of chemotherapy this time around, and my 11th overall. I spent the night in the hospital last night for my campath infusion, and got rituxan this morning before getting hooked up to my EPOCH bag. Its the same old process that I've gotten used to, but its a pain the butt.
Yesterday's appointment at the clinic was somewhat uneventful. I had a simple echo cardiogram test before the appointment, and it seemed to be non-eventful. The tech who did the test said everything with my heart looked good, so I'll take that good news. The research team that is overseeing my chemotherapy didn't have anything new to report. The doctors felt that it is likely that I'll need another transfusion this time around, since my hemoglobin will likely drop a lot again. Otherswise there wont' be any changes or scheduled tests or scans coming up this cycle.
While the research team had little to report, we did get some more information from the transplant team. First my parents and I had a conversation with the lead doctor on the transplant team. He was looking to start the transplant at the beginning of January to work around the holidays. My family and I were under the assumption that we would have already started, and that I would be in the hospital over Christmas anyways. Since the lead doctor of the research team had wanted us to get started as quickly after my chemotherpay ends, we didn't want to wait a few more weeks. We also got a little more detail from the nurse practicioner who works with the transplant team. He let us know that following the 6th cycle of chemo I would undergo about 3 or 4 days of tests in order to ensure I was ready for the transplant. That sounds like fun. It doesn't sound like anything I haven't been through before, but its probably all going to be crammed into a short amount of time.
So for the time being there isn't much new to report. I'll get the 5th and 6th cycle of EPOCH-CR most likely without much difference than what I've been through already. However, once December begins it looks like life for the Blattner's here in Maryland will be a whirlwind. Hopefully I'll have a lot of energy in the next 6 weeks and will be able to get myself ready for this transplant.
Yesterday's appointment at the clinic was somewhat uneventful. I had a simple echo cardiogram test before the appointment, and it seemed to be non-eventful. The tech who did the test said everything with my heart looked good, so I'll take that good news. The research team that is overseeing my chemotherapy didn't have anything new to report. The doctors felt that it is likely that I'll need another transfusion this time around, since my hemoglobin will likely drop a lot again. Otherswise there wont' be any changes or scheduled tests or scans coming up this cycle.
While the research team had little to report, we did get some more information from the transplant team. First my parents and I had a conversation with the lead doctor on the transplant team. He was looking to start the transplant at the beginning of January to work around the holidays. My family and I were under the assumption that we would have already started, and that I would be in the hospital over Christmas anyways. Since the lead doctor of the research team had wanted us to get started as quickly after my chemotherpay ends, we didn't want to wait a few more weeks. We also got a little more detail from the nurse practicioner who works with the transplant team. He let us know that following the 6th cycle of chemo I would undergo about 3 or 4 days of tests in order to ensure I was ready for the transplant. That sounds like fun. It doesn't sound like anything I haven't been through before, but its probably all going to be crammed into a short amount of time.
So for the time being there isn't much new to report. I'll get the 5th and 6th cycle of EPOCH-CR most likely without much difference than what I've been through already. However, once December begins it looks like life for the Blattner's here in Maryland will be a whirlwind. Hopefully I'll have a lot of energy in the next 6 weeks and will be able to get myself ready for this transplant.
Saturday, October 18, 2008
Blood Transfusion
Its been a while since I've updated my blog. I haven't had a lot of energy lately and haven't sat down at the computer long enough to type my thoughts out. From my bi-weekly blood tests, one could tell why I was losing energy. My hemoglobin level went from 8.2 on October 7th, to 8.4 on October 10th, to 7.4 on October 13th. Keep in mind that levels under 13 are considered anemic for adult males. During my best days, I've got a pretty formidable task to stay energized with this condition. At NIH, they start to consider blood transfusions when hemoglobin levels dip below 8.5. When it was 7.4, they wanted me to come in right away for a transfusion. I ended up doing that Monday evening, and the nurse who saw me through that procedure let me know that my hemoglobin fell into the 6's when it was tested Monday evening. So my energy which was already low, was decreasing quickly and significantly. It takes a while for them to get the blood ready for transfusion, so I was at NIH past midnight getting two units of blood. However, when I was walking out of the hospital I was feeling good and could definitely feel the positive effect of the blood tranfusion. My hemoglobin level on Thursday was 9.1, which is as high as its been in probably about a month or so.
So while I still feel much more tired than I normally should, the tranfusion was a big help. I was able to put in a full 4 day work week. Yes...Christopher Columbus gave me an extra day last weekend. Most other things have been good during this cycle. My mouth hasn't been nearly as uncomfortable or painful as it was the previous cycle, and the other side effects aren't any worse than usual.
A positive thing I'd like to share was that Father Bob, the campus minister from Catholic University stopped by last Monday before I went for my blood transfusion. I got to know him very well while a student at Catholic, and have kept him updated about Kate and I's life together after graduation. He works closely with the football team at Catholic, and expressed that the team has kept me in prayer recently. The football program has changed a lot since I was there, but the current senior class was there when I was still coaching. Father Bob talked to us about our current situation, and offered to organize some help for us from current students and some alumni. It was great to sit down with him and feel support coming from yet another place.
Right now I've got a few days left until the next round of chemotherapy begins. It feels good every time I think about where I am in the process and how much closer I am to being through with it. I feel like the bone marrow transplant is a big question mark staring me in the face that keeps on getting closer and closer. I'm ready to run right at that question mark and smash through it.
So while I still feel much more tired than I normally should, the tranfusion was a big help. I was able to put in a full 4 day work week. Yes...Christopher Columbus gave me an extra day last weekend. Most other things have been good during this cycle. My mouth hasn't been nearly as uncomfortable or painful as it was the previous cycle, and the other side effects aren't any worse than usual.
A positive thing I'd like to share was that Father Bob, the campus minister from Catholic University stopped by last Monday before I went for my blood transfusion. I got to know him very well while a student at Catholic, and have kept him updated about Kate and I's life together after graduation. He works closely with the football team at Catholic, and expressed that the team has kept me in prayer recently. The football program has changed a lot since I was there, but the current senior class was there when I was still coaching. Father Bob talked to us about our current situation, and offered to organize some help for us from current students and some alumni. It was great to sit down with him and feel support coming from yet another place.
Right now I've got a few days left until the next round of chemotherapy begins. It feels good every time I think about where I am in the process and how much closer I am to being through with it. I feel like the bone marrow transplant is a big question mark staring me in the face that keeps on getting closer and closer. I'm ready to run right at that question mark and smash through it.
Tuesday, October 7, 2008
Day 5 Round 4...or 10
Today is day 5 of my current round of chemotherapy, which means I had my PICC line taken out. So I am done with the infusions for a couple of weeks and happy about that. I am feeling pretty good right now, but the exhaustion of repeated rounds of chemotherapy is catching up with me a bit. It also didn't help my sleep that Isaiah has had a cough this past week and has been having trouble sleeping at night. In order to keep myself free from his potential illness, it might mean a couple of more nights on the pull out sofa. Its kind of odd how a simple cold forces me to change how I interact with my family. Oh well...just another small obstacale in the journey.
I just took a look back at the dates, and I started my first round of EPOCH-R on September 28, 2007. So in a year and a week I have been through 10 rounds of chemotherapy. Its been pretty intense, and unfortunately I still have a ways to go. I feel like a pro when it comes to my type of chemotherapy, and that won't be the hard part. The upcoming bone marrow transplant will effect me in ways in which I can't predict, but the lead doctor on the transplant team believes about a year's time should be what to expect in terms of getting back to full activities. So if all goes according to plan, then this trial I've had with cancer will have lasted over two by the time its over. I don't know what to think of that, but its a pretty long block of time. I had a great time during my remission from February to July, so I can't wait to get back to complete health for the rest of my life. Guess its time to stay focused on getting through this one day at a time!
I just took a look back at the dates, and I started my first round of EPOCH-R on September 28, 2007. So in a year and a week I have been through 10 rounds of chemotherapy. Its been pretty intense, and unfortunately I still have a ways to go. I feel like a pro when it comes to my type of chemotherapy, and that won't be the hard part. The upcoming bone marrow transplant will effect me in ways in which I can't predict, but the lead doctor on the transplant team believes about a year's time should be what to expect in terms of getting back to full activities. So if all goes according to plan, then this trial I've had with cancer will have lasted over two by the time its over. I don't know what to think of that, but its a pretty long block of time. I had a great time during my remission from February to July, so I can't wait to get back to complete health for the rest of my life. Guess its time to stay focused on getting through this one day at a time!
Friday, October 3, 2008
Round 4 Begins and Some New Information
Well I've got another catheter in my arm and the Campath is pumping. Its another round of chemotherapy after a day of some interesting news. Everything is going well in the hospital so far, except for my heart rate registering at about 225. WHAT! I guess something was wrong with the machine, because a minute later it showed a healthy 98 beats per minute.
I had a PET scan at NIH this morning before my clinic appointment with my research doctors. I was heading into this appointment with faith that the PET would reveal I am in remission. No problem with some confidence. Unfortunately that is not yet the case, although the doctors were positive about the results they saw. The cancer activity continued to decrease, although there is still some residual tumor cells surrounding the lung and in the mediastinum. The lead doctor used his fingers to demonstrate how large the three areas with cell activity are, and it appears that there is very little. However, I've already learned with this disease that any cancer is too much.
So the treatment plan that I'm on will be undergoing a bit of a change. The first thing is that the doctors want me to undergo six rounds of chemotherapy rather than just four. Since I am already starting my fourth round of chemo this time around, adding two more isn't that big of a deal. It will delay the bone marrow transplant for a short period of time, but it is more important that I head into the transplant completely cancer free than not. The other change is that the doctors will add Rituximab to my list of chemo drugs. My treatment the first time around was EPOCH-R, the R being for rituximab, so this isn't anything new they will be giving me. The idea is that although there were not any CD-20 cells in my biopsy back in July, there may be some residual CD-20 stained cancer cells somewhere in my body. Using Rituximab, a CD-20 anitbody, should help ensure I get complete remission of this crazy tumor in my body. I'm continuing to get Campath, so my treatment abbreviation is changing from EPOCH-C to EPOCH-CR.
So this sounds like more stuff that I have to go through, but Kate, my parents, and I aren't viewing this as negative at all. I think we were all pleased to hear that the cancer is still responsive to the chemotherapy. It is easy to fear that the drugs aren't working, but this isn't something that crosses my mind. I have complete faith that this treatment is working, and that I will be ready and healthy for the bone marrow transplant. The new timetable to begin the transplant looks to be in early to mid December. Thats about a month later than what I was thinking before, but thats fine with me. It means I should get a little more time working before taking my extended, medical induced vacation! Unfortunately I'll probably end up in the hospital over Christmas for the second year in a row, which is disappointing. However, I should be able to have a Thanksgiving at home...I reckon I'll just have to eat and drink enough on Turkey day to make up for missing Christmas at home.
Speaking of the transplant, we got some good news about that today as well. We don't have a single match, but out of the 10 people who received further testing, three of them were 10 out of 10 matches. So it looks like I'll have my donor in place to start the transplant on time. I don't know if they do any further testing to narrow down which potential donor would be asked first, but my Dad shared that the youngest, male donor will usually be selected.
So today has been one where my family and I received plenty of new, good information about my treatment. I wish I didn't have this disease and that I could be doing everything I love without hassle. However, thats not what I've been dealt, and I just need to continue living each day as best I can. Thanks to everybody around the country and the world who has been supporting my family and I through your thoughts and prayers. I know I speak for my family when I say that we are extremely grateful and consider ourselves blessed.
I had a PET scan at NIH this morning before my clinic appointment with my research doctors. I was heading into this appointment with faith that the PET would reveal I am in remission. No problem with some confidence. Unfortunately that is not yet the case, although the doctors were positive about the results they saw. The cancer activity continued to decrease, although there is still some residual tumor cells surrounding the lung and in the mediastinum. The lead doctor used his fingers to demonstrate how large the three areas with cell activity are, and it appears that there is very little. However, I've already learned with this disease that any cancer is too much.
So the treatment plan that I'm on will be undergoing a bit of a change. The first thing is that the doctors want me to undergo six rounds of chemotherapy rather than just four. Since I am already starting my fourth round of chemo this time around, adding two more isn't that big of a deal. It will delay the bone marrow transplant for a short period of time, but it is more important that I head into the transplant completely cancer free than not. The other change is that the doctors will add Rituximab to my list of chemo drugs. My treatment the first time around was EPOCH-R, the R being for rituximab, so this isn't anything new they will be giving me. The idea is that although there were not any CD-20 cells in my biopsy back in July, there may be some residual CD-20 stained cancer cells somewhere in my body. Using Rituximab, a CD-20 anitbody, should help ensure I get complete remission of this crazy tumor in my body. I'm continuing to get Campath, so my treatment abbreviation is changing from EPOCH-C to EPOCH-CR.
So this sounds like more stuff that I have to go through, but Kate, my parents, and I aren't viewing this as negative at all. I think we were all pleased to hear that the cancer is still responsive to the chemotherapy. It is easy to fear that the drugs aren't working, but this isn't something that crosses my mind. I have complete faith that this treatment is working, and that I will be ready and healthy for the bone marrow transplant. The new timetable to begin the transplant looks to be in early to mid December. Thats about a month later than what I was thinking before, but thats fine with me. It means I should get a little more time working before taking my extended, medical induced vacation! Unfortunately I'll probably end up in the hospital over Christmas for the second year in a row, which is disappointing. However, I should be able to have a Thanksgiving at home...I reckon I'll just have to eat and drink enough on Turkey day to make up for missing Christmas at home.
Speaking of the transplant, we got some good news about that today as well. We don't have a single match, but out of the 10 people who received further testing, three of them were 10 out of 10 matches. So it looks like I'll have my donor in place to start the transplant on time. I don't know if they do any further testing to narrow down which potential donor would be asked first, but my Dad shared that the youngest, male donor will usually be selected.
So today has been one where my family and I received plenty of new, good information about my treatment. I wish I didn't have this disease and that I could be doing everything I love without hassle. However, thats not what I've been dealt, and I just need to continue living each day as best I can. Thanks to everybody around the country and the world who has been supporting my family and I through your thoughts and prayers. I know I speak for my family when I say that we are extremely grateful and consider ourselves blessed.
Friday, September 26, 2008
Low Blood Counts Coming Up
I've felt the urge to update the blog several times this week, and even started typing at one point only to stop. Having the concentration and energy to sit down, gather my thoughts, and type for a few minutes can be hard at times. Its was probably harder the past few days than most since my blood counts were at their lowest during this time.
On Monday my white blood cell count was 400 with a neutrophil count of 310. Thats extremely low and offered me about as little help fighting infections as a person can get without a completely ineffective immune system. My temperature is usually between 97 and 98 degrees, and it went up to 99.5 at one point on Tuesday. So I had a borderline fever. However, my temperature came down quickly and I didn't have to consider calling NIH and heading to the hospital. Since then it has remained normal.
Yesterday was day 14 of my cycle and the day that I am usually told I can stop taking the neupogen shots. However, my neutrophil count was 4400, which is below the 5000 number necessary to stop the injections. I was somewhat expecting this since my counts were so low on Monday. So I'll make an extra stop to NIH tommorow to have my blood checked and ensure that my counts have risen to a safer level.
I worked all week and was pretty tired most days after getting home. Today I have a lot more energy in the afternoon and I feel like I've turned the corner in terms of energy this cycle. The next 5 days I should feel pretty normal and enjoy things before the next round of EPOCH-C begins.
On Monday my white blood cell count was 400 with a neutrophil count of 310. Thats extremely low and offered me about as little help fighting infections as a person can get without a completely ineffective immune system. My temperature is usually between 97 and 98 degrees, and it went up to 99.5 at one point on Tuesday. So I had a borderline fever. However, my temperature came down quickly and I didn't have to consider calling NIH and heading to the hospital. Since then it has remained normal.
Yesterday was day 14 of my cycle and the day that I am usually told I can stop taking the neupogen shots. However, my neutrophil count was 4400, which is below the 5000 number necessary to stop the injections. I was somewhat expecting this since my counts were so low on Monday. So I'll make an extra stop to NIH tommorow to have my blood checked and ensure that my counts have risen to a safer level.
I worked all week and was pretty tired most days after getting home. Today I have a lot more energy in the afternoon and I feel like I've turned the corner in terms of energy this cycle. The next 5 days I should feel pretty normal and enjoy things before the next round of EPOCH-C begins.
Saturday, September 20, 2008
Standard Update
My 2nd round of EPOCH-C was possibly the easiest cycle of chemotherapy I've had so far, but this most recent one has not been as nice. Things are still going well, although the chemo has been affecting me a bit more. I was able to work the entire week, and felt pretty good while doing so. On Thursday I came home to see my mom had stopped by for a surprise visit. A back to school night was scheduled at work, but I decided to lay down for a minute to rest before heading back to work. I immediately fell asleep, and became completely disoriented. Isaiah brushed by my leg at one point, and I woke up startled and thinking it was the next day, although I probably had only had my eyes closed a few minutes. So I ditched the idea of returning to work and took a nap while Kate, Isaiah, and my mom went to the local farmer's market.
One of the cumulative side effects of the chemotherapy is gum loss. The mouth is full of rapidly producing cells, and the chemotherapy is starting to take a toll on them. I've started to notice a little less taste this past week from my taste buds. My gums are bleeding very easily when I brush, I'm getting some small sores on my tongue and, the receeding gums means I get way too much food stuck in between my teeth. This hasn't become a big problem, but it can certainly be uncomfortable. A clean, healthy mouth is definitely one of the small things in life that is taken for granted until it becomes a problem.
One of the cumulative side effects of the chemotherapy is gum loss. The mouth is full of rapidly producing cells, and the chemotherapy is starting to take a toll on them. I've started to notice a little less taste this past week from my taste buds. My gums are bleeding very easily when I brush, I'm getting some small sores on my tongue and, the receeding gums means I get way too much food stuck in between my teeth. This hasn't become a big problem, but it can certainly be uncomfortable. A clean, healthy mouth is definitely one of the small things in life that is taken for granted until it becomes a problem.
Saturday, September 13, 2008
Chemo, football, and a Sunburn
I'm happy to be receiving a lot of support from people about my blog. Its great to hear from different people that they look forward to reading my thoughts and following this journey I'm on. I started off today heading to NIH to get my 2nd bag of EPOCH for this cycle. For some reason my blood pressure and temperature were both somewhat high when I went it. Neither reading sent off any alarms, but I am usually pretty consistent with these two measurements so it was kind of odd to see that. My temperature this evening has been where it usually is, so I don't know what it was this morning.
In the afternoon I was able to head to Catholic University to watch their football game. It was a good game that they ended up winning, and I ran into a few familiar faces...although there are less and less of those every year I head back to campus. It was great to be out in nice weather and enjoying something I love. Unfortunately being out in the sun for so long can lead to some complications for a fair skinned dude like me. I've got a nice amount of red on my arms, face, and legs. Kate was nice enough to laugh about the hat tan I got on the back of my bald head. I guess I'll have to spend my day inside tommorow, which won't be so bad on a fall Sunday.
In the afternoon I was able to head to Catholic University to watch their football game. It was a good game that they ended up winning, and I ran into a few familiar faces...although there are less and less of those every year I head back to campus. It was great to be out in nice weather and enjoying something I love. Unfortunately being out in the sun for so long can lead to some complications for a fair skinned dude like me. I've got a nice amount of red on my arms, face, and legs. Kate was nice enough to laugh about the hat tan I got on the back of my bald head. I guess I'll have to spend my day inside tommorow, which won't be so bad on a fall Sunday.
Thursday, September 11, 2008
Round 3 of EPOCH-C Begins
Today marks the last day of my 2nd cycle of EPOCH-C, and the beginning of the 3rd cycle. Things started off well. I dropped Isaiah off at pre-school and for the second day in a row he clung to me and screamed as I tried to leave. The good news is that he is doing great at school, although its hard to walk out of a room with your child screaming for your attention. After that I was able to put in a half day of work before heading off with Kate to my clinic appointment.
The appointment today was mostly uneventful. There weren't any new tests run to check on the status of the cancer in my body. I reported back that things went well and they decided to proceed with business as usual. Next time I'm in for my clinic appointment after this third cycle, they will put me through the PET Scan again. At that point I'm praying and expecting a clean PET that will tell me I am in remission. That would set me up perfectly for the transplant that is coming up.
Now it wasn't planned, but Kate, my parents, and I were able to talk with the transplant doctor today for a few minutes. He answered a few questions, and stated that he would state on the disability forms I need filled out that I would probably be out of work until January 2010. OUCHHHH. That hurts. Its a long time to consider not having anything to do but this medical business. He did say its possible that I could go back sooner, and I have every intention of doing so. Hopefully the recovery from the transplant will be smooth enough to allow me to do so.
Following the appointment Kate and my mom went home to pick Isaiah up from school while my dad stayed with me while I got admitted. After I was all checked in my dad and I went out to get a steak and a beer before starting my infusions. It was a good experience, because while I see my father often, it is infrequent that we get to enjoy a full meal one on one. That was a good time to have.
Now that I am in the hospital, I got a chance to speak with my roommate and his wife. He is a guy in his 60s who has T-cell lymphoma. Before receiving EPOCH-C, I was told by my doctors that I was only the 7th person with Lymphoma to receive this treatment. Pretty rare company. Turns out my roommate tonight is one of the other six. He is a good guy who is in here now because of an infection. He has already finished up his treatment and is thankfully in remission. He is full of praise for Campath and the doctors at NIH, which is great to hear from somebody with a similar treatment. So hopefully both of us continue to do well coming out of this treatment, and Campath can hopefully become a bonified option for Lymphoma patients.
Saturday, September 6, 2008
Rain Rain Go Away
Well right now the rain is pouring down as Tropical Storm Hanna comes through. The news says about an inch and a half has fallen near here today after about a half inch last night. So there are some nice puddles in the yard, and a little bit of an overflowing gutter. Isaiah's sandbox has some sand stolen from it in order to keep water away from our front door. Lots of rain, but its kind of fun. Isaiah and I took some time to play in the rain this morning, and we have some evidence to prove it.
Since I am crazy enough to play around in the rain, you can probably assume that I am feeling well. My blood test from Thursday was above the point of being neutropenic, so I was able to stop taking my neupogen injection. I never had my blood tested below the neutropenic point during this cycle, but I was just barely above being neutropenic with this last test. So it is likely that I reached that point on Tuesday or Wednesday. However, I was able to work all week, and felt like I had a ton of energy. Last night I fell asleep around Isaiah's bed time, and didn't get up for about 12 hours. So I think my body shut down a bit after a busy week, but I am well rested and have a ton of energy again today. So right now I am looking forward to a few more days of feeling great before I head back toNIH on Thursday for the next round of chemotherapy.
Since I am crazy enough to play around in the rain, you can probably assume that I am feeling well. My blood test from Thursday was above the point of being neutropenic, so I was able to stop taking my neupogen injection. I never had my blood tested below the neutropenic point during this cycle, but I was just barely above being neutropenic with this last test. So it is likely that I reached that point on Tuesday or Wednesday. However, I was able to work all week, and felt like I had a ton of energy. Last night I fell asleep around Isaiah's bed time, and didn't get up for about 12 hours. So I think my body shut down a bit after a busy week, but I am well rested and have a ton of energy again today. So right now I am looking forward to a few more days of feeling great before I head back toNIH on Thursday for the next round of chemotherapy.
Wednesday, September 3, 2008
No News is Good News and an off topic note on Isaiah
Well there is nothing for me to update medically today, which is good news. I've been at work the last two days and have had great energy and no problems associated with the chemotherapy. Tommorow I will have my blood drawn again, and should here back in the evening or Friday morning about where my blood counts stand. At this point during the last cycle my counts had rebounded greatly, so I'm expecting more of the same from this report.
Since many people reading this know or have met Isaiah, I thought I'd share some of his good news. Today was his first day of pre-school, which led to a lot of excitement for him and some nervousness from his mother. Kate and I dropped him off together this morning before I headed off to work. He jumped right in to the toys and seemed to be happy to be at school. He didn't panic as we walked out the door.
The school is located conveniently for me on my new route home from work, so I picked him up about four o'clock. I met his teacher, who was not there yet when we dropped him off in the morning. She reported that Isaiah had a great day, although when she first arrived he was screaming. I guess he wasn't quite prepared for school without mommy and daddy. However, she said he calmed himself in 5 minutes and didn't have any troubles the rest of the day.
She was impressed with how Isaiah behaved and communicated, and said she was surprised this was his first day considering how he did. Part of the day is nap time, which is interesting since Isaiah has given up on day time naps over the summer. When the children were asked to lay down, Isaiah stated, "I am going to sit."
The teacher told Isaiah, "You can lay down on the cot."
To which Isaiah replied, "I'd rather not."
She seemed impressed and entertained by his communication style. So Isaiah seems to have found a new friend in his teacher. Isaiah was excited to share about his day over the phone with his family, although that basically involved him repeatedly exclaiming, "I went to school today." He is excited to head back tommorow, and so am I after finding out he had such a wonderful time.
Since many people reading this know or have met Isaiah, I thought I'd share some of his good news. Today was his first day of pre-school, which led to a lot of excitement for him and some nervousness from his mother. Kate and I dropped him off together this morning before I headed off to work. He jumped right in to the toys and seemed to be happy to be at school. He didn't panic as we walked out the door.
The school is located conveniently for me on my new route home from work, so I picked him up about four o'clock. I met his teacher, who was not there yet when we dropped him off in the morning. She reported that Isaiah had a great day, although when she first arrived he was screaming. I guess he wasn't quite prepared for school without mommy and daddy. However, she said he calmed himself in 5 minutes and didn't have any troubles the rest of the day.
She was impressed with how Isaiah behaved and communicated, and said she was surprised this was his first day considering how he did. Part of the day is nap time, which is interesting since Isaiah has given up on day time naps over the summer. When the children were asked to lay down, Isaiah stated, "I am going to sit."
The teacher told Isaiah, "You can lay down on the cot."
To which Isaiah replied, "I'd rather not."
She seemed impressed and entertained by his communication style. So Isaiah seems to have found a new friend in his teacher. Isaiah was excited to share about his day over the phone with his family, although that basically involved him repeatedly exclaiming, "I went to school today." He is excited to head back tommorow, and so am I after finding out he had such a wonderful time.
Monday, September 1, 2008
Feeling Great at Day 11
Well today is day 11 of my 2nd round of chemotherapy and I'm happy to report I'm feeling great. Since I stopped receiving my infusions, I am supposed to monitor my temperature closely to make sure I don't develop a fever. I haven't risen above 98.7, so thats been good. I don't remember well, but Kate reminded me that it was day 12 during the last cycle that I felt the worst. Hopefully my positive feeling won't end in the next day or so.
Today I went in to NIH to get my blood drawn. I got a phone call back from the nurse there that I am not neutropenic. That isn't surprising considering how I'm feeling, but it is considering I was neutropenic at this point in the 1st cycle. The dosage increased with the EPOCH, so I believe the doctors thought I would be very low on my blood counts. While all of my counts are fine right now, it is still possible that they are still decreasing. So there is a chance I could still get sick in the next few days. By Thursday I should know if my counts are rebounding, and I expect that to be the situation.
While at NIH I took the opportunity to weigh myself, and I was down to 246. So while it was shocking to gain 10 pounds in 5 days last week, it is good to know that not all of that weight was permanent. I still have a good appetite, so its not like I'm starving myself. I probably had a lot of extra water weight at that time.
Well I am feeling great right now, and enjoying the paid day off for Labor Day. If I feel as well as I do now tommorow I will be finishing up another day of work in 24 hours. Out of all 8 cycles of chemotherapy that I've had, I think I might be feeling as good during this round as I have during any. My energy is high, and I'm not feeling a lot of side effects. I hope everybody else is feeling great and enjoying the holiday as much as I am!
Today I went in to NIH to get my blood drawn. I got a phone call back from the nurse there that I am not neutropenic. That isn't surprising considering how I'm feeling, but it is considering I was neutropenic at this point in the 1st cycle. The dosage increased with the EPOCH, so I believe the doctors thought I would be very low on my blood counts. While all of my counts are fine right now, it is still possible that they are still decreasing. So there is a chance I could still get sick in the next few days. By Thursday I should know if my counts are rebounding, and I expect that to be the situation.
While at NIH I took the opportunity to weigh myself, and I was down to 246. So while it was shocking to gain 10 pounds in 5 days last week, it is good to know that not all of that weight was permanent. I still have a good appetite, so its not like I'm starving myself. I probably had a lot of extra water weight at that time.
Well I am feeling great right now, and enjoying the paid day off for Labor Day. If I feel as well as I do now tommorow I will be finishing up another day of work in 24 hours. Out of all 8 cycles of chemotherapy that I've had, I think I might be feeling as good during this round as I have during any. My energy is high, and I'm not feeling a lot of side effects. I hope everybody else is feeling great and enjoying the holiday as much as I am!
Tuesday, August 26, 2008
Ten Pounds
Today was day five of my second cycle of chemotherapy, which means I received my cytoxin infusion and had my PICC line pulled out. So I am no longer connected to a backpack full of medicine!!!
I had a different nurse the last two days, and she decided to weigh me before my infusion. I usually don't get weighed at this time, but I did so today. On Thursday, just 5 days ago, I weighed in at 239 pounds. That was only 3 pounds more than I had weighed before my first round of EPOCH-C. So I was proud of myself for not gaining a lot of weight despite all of the hunger I experience with the prednisone.
So just 5 prednisone fueled days after the last weigh in, I jumped on the scales at 249! 10 pounds in less than 5 days is impressive. Thats some good eating! Now...I did leave my shoes on, have a bit of crap in my pocket, and was wearing long pants instead of shorts, so it might have been just 9 pounds. However, that is still a lot to put on in such a short amount of time. It will be interesting to see how my weight does over the next 16 days when I am off of the steroids.
Besides the full belly I am doing well though. I was able to work this morning and Monday, which was nice to do since Monday was the first day of school for students. Seeing the students who I've worked with before and meeting new students reminded me so much why I love my job. It felt great to be back in that environment, but disappointing at the same time since I don't know how much I will be able to work this year while dealing with this illness. Its discouraging to know that I won't be there everyday, but this is just one of those situations where I have to take things from day to day. For the rest of the week I plan on working, but I know next week my blood counts will be so low that I might not have the energy to make it through a day of work. My lead research doctor let me know to be prepared to enter the hospital next week, but I'm hoping that won't need to happen.
I had a different nurse the last two days, and she decided to weigh me before my infusion. I usually don't get weighed at this time, but I did so today. On Thursday, just 5 days ago, I weighed in at 239 pounds. That was only 3 pounds more than I had weighed before my first round of EPOCH-C. So I was proud of myself for not gaining a lot of weight despite all of the hunger I experience with the prednisone.
So just 5 prednisone fueled days after the last weigh in, I jumped on the scales at 249! 10 pounds in less than 5 days is impressive. Thats some good eating! Now...I did leave my shoes on, have a bit of crap in my pocket, and was wearing long pants instead of shorts, so it might have been just 9 pounds. However, that is still a lot to put on in such a short amount of time. It will be interesting to see how my weight does over the next 16 days when I am off of the steroids.
Besides the full belly I am doing well though. I was able to work this morning and Monday, which was nice to do since Monday was the first day of school for students. Seeing the students who I've worked with before and meeting new students reminded me so much why I love my job. It felt great to be back in that environment, but disappointing at the same time since I don't know how much I will be able to work this year while dealing with this illness. Its discouraging to know that I won't be there everyday, but this is just one of those situations where I have to take things from day to day. For the rest of the week I plan on working, but I know next week my blood counts will be so low that I might not have the energy to make it through a day of work. My lead research doctor let me know to be prepared to enter the hospital next week, but I'm hoping that won't need to happen.
Saturday, August 23, 2008
Bone Marrow Transplant Details
SATURDAY, AUGUST 23, 2008 02:26 PM, CDT
After the good news on Thursday things continued to go well for me. I was told that the first infusion of Campath is the one with the worst side effects. After a night without fevers, chills, or any pain, I would have to agree. The only problem staying overnight at the hospital was being woken every hour when the nurses took vital signs.
Friday was another long day at the hospital. In addition to finishing up the Campath and getting hooked up to my EPOCH bag, I had two other tests. I had a Pulmonary Functioning Test and an Echocardiogram. The techs told me after each test that my lung and my heart were looking good. Thats great news looking forward to the Bone Marrow Transplant.
After those two tests I met up with Kate at the hospital. She and I got an opportunity to speak with the transplant doctor for about a half hour. He let us know that there were 600 potential donors from the search, and that it gave us an 80 percent chance of finding a match. That was pretty good to hear. He also went into detail about the three different types of transplants that are done for lymphoma patients.
The lead research doctor told us 3 weeks ago that an autologus transplant, which uses a patients own stem cells to replace the decimated bone marrow, would be unlikely to provide a long term cure. The transplant doctor said that he thinks all 3 transplant options would be good for me, but was less enthusiastic about this option because of how quickly I relapsed after going into complete remission.
The other two transplant options are called allogeneic transplants. They require taking bone marrow from a donor. The traditional way of doing this is called a myelooblative transplant. Myelooblative, also called a high intensity transplant, requires radiation and high dose chemotherapy to virtually remove all of the bone marrow in my body before the transplant. The good news about this transplant is that it has the best results in terms of complete remission. However, it also has the highest mortality rates...about 20-30%. The transplant doctor said if I were a 15-17 year old, that he would definitely reccomend this option. His thinking is that younger patients are just able to handle the high dosage of chemotherapy without complications. He stated that at my age I am in the middle ground but leaning towards the younger side. So this wouldn't be a bad option in his opinion.
The more recent development in stem cell transplants is the non-myelooblative transplant, also known as low intensity. The thought behind this procedure is that a complete elimination of the recipient's bone marrow isn't necessary, and that an allogeneic transplant could be done with smaller doses of chemotherapy. The difference between the myelooblative and non-myeloblative transplants is a reduction in half in both mortality rates and successful remission. The mortality rate for his treatment is 10%, however the percent of those achieving complete remission is between 25-75%. Thats a pretty big range in my opinion. However, the 1 in 10 chance of mortality sounds a lot better than 20-30% to me.
The doctor shared that to be eligible for a low intensity transplant, that a person's tumor has to be viewed as chemo sensitive. The number needed to be chemo sensitive is 50% improvement. Since I received an 80-90% improvement on just 1 cycle of EPOCH-C, I am already seen as a good match for this treatment. The doctor stated that the best predictor of success in these transplants is cancer sensitivity. Because of my positive results so far, he feels that I would be a great candidate for a non-myelooblative transplant.
OK...so thats a lot of information and I imagine it could be quite complicated for people. At this point I feel like going forward with the non-myelooblative transplant. I feel like the chemo works well on my cancer, and that I will likely be in remission again like I was back in January. That would give me a great chance of long term remission with this treatment, and I could avoid the higher potential mortality rates that the full intensity treatment has. NIH also offers the low intensity transplant, which would allow us to stay local with my treatment. Having to go to another city to have the transplant would be worthwhile if there was a better option. However, I feel comfortable with the program at NIH, and I trust that my doctor's are learning how to treat my cancer. As the transplant doctor said, "Its not like you have even 100 patients with your type of disease to give us an idea of what should be done." Other hospitals just might not have a good idea of what to do with my diagnosis.
Staying at NIH will also allow my family to visit easily without the stresses of travel. Kate will have a lot on her hands with a sick husband at the hospital and a 2 year old to watch at home. So the family support will be very important during this ordeal. So things are looking good for my continued treatment at NIH. The doctor just reccomended that I continue to eat healthy, exercise, and stay in as best shape as possible. Assuming the chemotherapy continues to go well, things are looking up. Unfortunately it will be a long process. The doctor stated that it takes about a year's committment after this procedure. However, he said that once I leave the hospital I should be able to endure most activities that I normally do. The one thing he did state was that yard work would not be reccomended. Oh well...there goes one of the things I like to do, but it could be worse!
After the good news on Thursday things continued to go well for me. I was told that the first infusion of Campath is the one with the worst side effects. After a night without fevers, chills, or any pain, I would have to agree. The only problem staying overnight at the hospital was being woken every hour when the nurses took vital signs.
Friday was another long day at the hospital. In addition to finishing up the Campath and getting hooked up to my EPOCH bag, I had two other tests. I had a Pulmonary Functioning Test and an Echocardiogram. The techs told me after each test that my lung and my heart were looking good. Thats great news looking forward to the Bone Marrow Transplant.
After those two tests I met up with Kate at the hospital. She and I got an opportunity to speak with the transplant doctor for about a half hour. He let us know that there were 600 potential donors from the search, and that it gave us an 80 percent chance of finding a match. That was pretty good to hear. He also went into detail about the three different types of transplants that are done for lymphoma patients.
The lead research doctor told us 3 weeks ago that an autologus transplant, which uses a patients own stem cells to replace the decimated bone marrow, would be unlikely to provide a long term cure. The transplant doctor said that he thinks all 3 transplant options would be good for me, but was less enthusiastic about this option because of how quickly I relapsed after going into complete remission.
The other two transplant options are called allogeneic transplants. They require taking bone marrow from a donor. The traditional way of doing this is called a myelooblative transplant. Myelooblative, also called a high intensity transplant, requires radiation and high dose chemotherapy to virtually remove all of the bone marrow in my body before the transplant. The good news about this transplant is that it has the best results in terms of complete remission. However, it also has the highest mortality rates...about 20-30%. The transplant doctor said if I were a 15-17 year old, that he would definitely reccomend this option. His thinking is that younger patients are just able to handle the high dosage of chemotherapy without complications. He stated that at my age I am in the middle ground but leaning towards the younger side. So this wouldn't be a bad option in his opinion.
The more recent development in stem cell transplants is the non-myelooblative transplant, also known as low intensity. The thought behind this procedure is that a complete elimination of the recipient's bone marrow isn't necessary, and that an allogeneic transplant could be done with smaller doses of chemotherapy. The difference between the myelooblative and non-myeloblative transplants is a reduction in half in both mortality rates and successful remission. The mortality rate for his treatment is 10%, however the percent of those achieving complete remission is between 25-75%. Thats a pretty big range in my opinion. However, the 1 in 10 chance of mortality sounds a lot better than 20-30% to me.
The doctor shared that to be eligible for a low intensity transplant, that a person's tumor has to be viewed as chemo sensitive. The number needed to be chemo sensitive is 50% improvement. Since I received an 80-90% improvement on just 1 cycle of EPOCH-C, I am already seen as a good match for this treatment. The doctor stated that the best predictor of success in these transplants is cancer sensitivity. Because of my positive results so far, he feels that I would be a great candidate for a non-myelooblative transplant.
OK...so thats a lot of information and I imagine it could be quite complicated for people. At this point I feel like going forward with the non-myelooblative transplant. I feel like the chemo works well on my cancer, and that I will likely be in remission again like I was back in January. That would give me a great chance of long term remission with this treatment, and I could avoid the higher potential mortality rates that the full intensity treatment has. NIH also offers the low intensity transplant, which would allow us to stay local with my treatment. Having to go to another city to have the transplant would be worthwhile if there was a better option. However, I feel comfortable with the program at NIH, and I trust that my doctor's are learning how to treat my cancer. As the transplant doctor said, "Its not like you have even 100 patients with your type of disease to give us an idea of what should be done." Other hospitals just might not have a good idea of what to do with my diagnosis.
Staying at NIH will also allow my family to visit easily without the stresses of travel. Kate will have a lot on her hands with a sick husband at the hospital and a 2 year old to watch at home. So the family support will be very important during this ordeal. So things are looking good for my continued treatment at NIH. The doctor just reccomended that I continue to eat healthy, exercise, and stay in as best shape as possible. Assuming the chemotherapy continues to go well, things are looking up. Unfortunately it will be a long process. The doctor stated that it takes about a year's committment after this procedure. However, he said that once I leave the hospital I should be able to endure most activities that I normally do. The one thing he did state was that yard work would not be reccomended. Oh well...there goes one of the things I like to do, but it could be worse!
Good News after First Cycle of Chemotherapy
THURSDAY, AUGUST 21, 2008 08:38 PM, CDT
So this is nice. I'm sitting in my hospital room for the night waiting to start treatment and I've got an internet hookup. I've known there was a possibility to access the internet in the rooms at NIH, but this is the first time one of my beds was equipped with the keyboard and mouse. The space bar on this keyboard is extremely sticky, which is an annoyance. If you read any compound words that shouldn't be, you will know why.
As far as all day hospital visits go, today wasn't bad. I had a Pet Scan to start the day, and it was a lot more comfortable than the one I had a month ago. My plan to stay up half the night last night paid off this morning. I slept very easily during the scan. Even better news than my comfort during the scan was its result. I was informed by my lead doctor while I waited for my appointment that the Pet Scan had very positive results. Later during the consultation he stated the Pet showed an 80 to 90% improvement. That was great news. Since the treatment has gone so well after this first treatment, I will continue to receive the EPOCH and Campath.
Following my appointment I went to get my PICC line placed. That was uncomfortable as usual, but its over with now. While I was getting that procedure, my parents talked with the doctor from the transplant team. He gave them some good information about what the process will be like. We discussed things over dinner, and my parents said the doctor will see me tommorow and give me further information. My father the doctor was impressed with the transplant doctor, and I feel like I will be comfortable getting the transplant here at NIH. It will be great to get that treatment here in Maryland, because I will be close to family and friends. The free services at NIH(THANKYOU FELLOW TAX PAYERS) will also be a great benefit in addition to the high level of medical care I will get here. Unfortunately it looks like I will be spending up to a year out of work following the transplant, so there will be a lot of issues to deal with financially. Luckily for Kate, Isaiah, and I we have a family full of people that are completely supportive. I imagine how hard it is to live through this process for those without the financial and spiritual resources our family and friends have, and I know that we are blessed.
So the vibe tonight is of happiness. The treatment is working so far, but there is still a long way to go before permanent good health is achieved. I should start this second round of chemotherapy around 11 tonight, and hopefully all will go well.
So this is nice. I'm sitting in my hospital room for the night waiting to start treatment and I've got an internet hookup. I've known there was a possibility to access the internet in the rooms at NIH, but this is the first time one of my beds was equipped with the keyboard and mouse. The space bar on this keyboard is extremely sticky, which is an annoyance. If you read any compound words that shouldn't be, you will know why.
As far as all day hospital visits go, today wasn't bad. I had a Pet Scan to start the day, and it was a lot more comfortable than the one I had a month ago. My plan to stay up half the night last night paid off this morning. I slept very easily during the scan. Even better news than my comfort during the scan was its result. I was informed by my lead doctor while I waited for my appointment that the Pet Scan had very positive results. Later during the consultation he stated the Pet showed an 80 to 90% improvement. That was great news. Since the treatment has gone so well after this first treatment, I will continue to receive the EPOCH and Campath.
Following my appointment I went to get my PICC line placed. That was uncomfortable as usual, but its over with now. While I was getting that procedure, my parents talked with the doctor from the transplant team. He gave them some good information about what the process will be like. We discussed things over dinner, and my parents said the doctor will see me tommorow and give me further information. My father the doctor was impressed with the transplant doctor, and I feel like I will be comfortable getting the transplant here at NIH. It will be great to get that treatment here in Maryland, because I will be close to family and friends. The free services at NIH(THANKYOU FELLOW TAX PAYERS) will also be a great benefit in addition to the high level of medical care I will get here. Unfortunately it looks like I will be spending up to a year out of work following the transplant, so there will be a lot of issues to deal with financially. Luckily for Kate, Isaiah, and I we have a family full of people that are completely supportive. I imagine how hard it is to live through this process for those without the financial and spiritual resources our family and friends have, and I know that we are blessed.
So the vibe tonight is of happiness. The treatment is working so far, but there is still a long way to go before permanent good health is achieved. I should start this second round of chemotherapy around 11 tonight, and hopefully all will go well.
First Round of Chemotherapy Done
THURSDAY, AUGUST 21, 2008 12:13 AM, CDT
Well today is day 21 of this most recent round of chemo. School for DC starts next week, and Tuesday was the first day of work for teachers in DC. I was able to work the last two days because I have been feeling very good since Thursday. I haven't needed naps to get through the day, and I've truly felt as good as ever. Work the past two days involved all day professional development, which isn't a bad thing. I was happy to see some of my colleagues and get back into the mindset of work, although it is frustrating to know that I'll likely be missing so much time in the next few months.
Tommorow will probably start day 1 of round 2 assuming things have gone well. I'll start tommorow off with a Pet Scan in the late morning. I had a Pet Scan less than a month ago, and its rare for Pet Scans to be used so close together. Hopefully it will give results that show the tumor is shrinking. This is what I expect, but we've been disappointed by expectations in terms of my health in the last month.
In addition to meeting with my research team tommorow, I'm hoping to meet with the transplant team in order to start hearing a bit more about what the transplant process will be like. This is the part of my treatment that is most likely to cause me anxiety, so I'm eager to start finding out more about it.
Following the meetings with the doctors I'll likely get the PICC line placed in my arm before getting admitted for the overnight Campath infusion. Hopefully they will be able to get started earlier than 1 AM this round, so I can get out of the hospital quickly Friday morning.
Well...off to kill some more cancer tommorow. As always...the prayers and thoughts from everybody is appreciated.
Well today is day 21 of this most recent round of chemo. School for DC starts next week, and Tuesday was the first day of work for teachers in DC. I was able to work the last two days because I have been feeling very good since Thursday. I haven't needed naps to get through the day, and I've truly felt as good as ever. Work the past two days involved all day professional development, which isn't a bad thing. I was happy to see some of my colleagues and get back into the mindset of work, although it is frustrating to know that I'll likely be missing so much time in the next few months.
Tommorow will probably start day 1 of round 2 assuming things have gone well. I'll start tommorow off with a Pet Scan in the late morning. I had a Pet Scan less than a month ago, and its rare for Pet Scans to be used so close together. Hopefully it will give results that show the tumor is shrinking. This is what I expect, but we've been disappointed by expectations in terms of my health in the last month.
In addition to meeting with my research team tommorow, I'm hoping to meet with the transplant team in order to start hearing a bit more about what the transplant process will be like. This is the part of my treatment that is most likely to cause me anxiety, so I'm eager to start finding out more about it.
Following the meetings with the doctors I'll likely get the PICC line placed in my arm before getting admitted for the overnight Campath infusion. Hopefully they will be able to get started earlier than 1 AM this round, so I can get out of the hospital quickly Friday morning.
Well...off to kill some more cancer tommorow. As always...the prayers and thoughts from everybody is appreciated.
Feeling Better
FRIDAY, AUGUST 15, 2008 11:02 PM, CDT
Today was a very good day. Unfortunately Isaiah woke up at 7 and instead of playing quietly in his room, he decided to make a lot of noise and force me up. So I was up much earlier than I have been used to lately. However, I felt great all day and didn't need a nap to get through it. Thats the first time in weeks I've been able to go through a day without passing out once or twice. So I had a great day spending time with Isaiah and Kate.
After my blood tests from Monday revealed my white blood cell count was down to 800, I received a call that my blood count yesterday was at 7800. I needed a blood count of over 5000 in order to stop my neupogen shots, so it is great that I rebounded that much. I think my renewed energy is a sign of that.
I also got a call from the doctor who leads my research team. It was interesting that I talked to him, because its usually a nurse who makes calls. He passed on that the search for bone marrow donors was complete. His words were that there were a lot of potential donors, and it was highly likely that they would find a match. So thats great news. It was expected, but it was great to hear nevertheless.
There have been a lot of people, whether through my wife, my parents, or I, who have expressed an interest in becoming a bone marrow donor. I would hope that anybody who had that urge would follow through with that. It appears that I will be blessed enough to have a donor match, but it would be amazing if more people could make themselves eligible as donors so that other people who find themselves in a similar situation as mine will have better opportunities.
Today was a very good day. Unfortunately Isaiah woke up at 7 and instead of playing quietly in his room, he decided to make a lot of noise and force me up. So I was up much earlier than I have been used to lately. However, I felt great all day and didn't need a nap to get through it. Thats the first time in weeks I've been able to go through a day without passing out once or twice. So I had a great day spending time with Isaiah and Kate.
After my blood tests from Monday revealed my white blood cell count was down to 800, I received a call that my blood count yesterday was at 7800. I needed a blood count of over 5000 in order to stop my neupogen shots, so it is great that I rebounded that much. I think my renewed energy is a sign of that.
I also got a call from the doctor who leads my research team. It was interesting that I talked to him, because its usually a nurse who makes calls. He passed on that the search for bone marrow donors was complete. His words were that there were a lot of potential donors, and it was highly likely that they would find a match. So thats great news. It was expected, but it was great to hear nevertheless.
There have been a lot of people, whether through my wife, my parents, or I, who have expressed an interest in becoming a bone marrow donor. I would hope that anybody who had that urge would follow through with that. It appears that I will be blessed enough to have a donor match, but it would be amazing if more people could make themselves eligible as donors so that other people who find themselves in a similar situation as mine will have better opportunities.
Neutropenia
WEDNESDAY, AUGUST 13, 2008 12:26 AM, CDT
I woke up this morning and didn't feel any pain at all in my back. I got through the whole day and didn't have any problems with bone pain, so that was great.
I got a call from one of the nurses at NIH with the results of my blood test from yesterday. I get my blood drawn twice a week to check the white cell counts. Last Friday I had normal a normal WBC count of 1600. From Monday's test I had gone down to 800, which made me neutropenic. That basically means I have less cells fighting infections in my blood, so I am susceptible to infections.
I definitely felt the effects of this condition on my body, because I slept most of the day. I had very little energy and couldn't stay awake after having breakfast. I managed to get out of the house a little bit in the late afternoon, but I quickly started feeling worn out after that. So it looks like I'll be taking it easy for the next couple of days until I get the results of my next blood test Thursday or Friday.
I woke up this morning and didn't feel any pain at all in my back. I got through the whole day and didn't have any problems with bone pain, so that was great.
I got a call from one of the nurses at NIH with the results of my blood test from yesterday. I get my blood drawn twice a week to check the white cell counts. Last Friday I had normal a normal WBC count of 1600. From Monday's test I had gone down to 800, which made me neutropenic. That basically means I have less cells fighting infections in my blood, so I am susceptible to infections.
I definitely felt the effects of this condition on my body, because I slept most of the day. I had very little energy and couldn't stay awake after having breakfast. I managed to get out of the house a little bit in the late afternoon, but I quickly started feeling worn out after that. So it looks like I'll be taking it easy for the next couple of days until I get the results of my next blood test Thursday or Friday.
Bone Pain and Oxycodone
MONDAY, AUGUST 11, 2008 08:38 PM, CDT
I just spent a lot of time writing out a journal update to only have it lost. I hate when that happens. Oh well...time to retype my thoughts.
First...thanks to those who have written on my guestbook. I check that periodically and definitely appreciate all of the support and prayers people have sent out.
Today is day 11 in this round of chemo therapy. Last time around I started losing my hair at day 15, so I don't have much time left to enjoy my beautiful head. This time of the cycle is pretty boring. At this point I've started to regain my energy and the frequent and uncomfortable trips to the bathroom have subsided. I take a bunch of pills every day, and give myself a shot of neupogen every night.
Neupogen is a drug that stimulates growth of neutrophils in the bone marrow. Since the chemotherapy can wipe my white blood cell count down to dangerous levels, this drug is important to help my immune system rebound. Giving myself the shot isn't such a bad deal. I just have to inject it into the skin and not the vein, and after a few dozen times it becomes pretty routine.
The drawback of the Neupogen shot is it causes bone pain. The pain is usually a dull pain that is frequently in my shin, thigh, shoulder, or jaw. Unfortunately for me today I had the pain in my lower back where the spine meets the pelvis. Not only was the pain in an uncomfortable place, but it was as sharp as I've ever felt. I spent the early morning shifting positions trying to get comfortable, but nothing seemed to work.
I don't care for drugs and usually try to tough things out. However, I decided to hit up the oxycodone that was prescribed to me. I took one pill in the morning and felt absolutely no effect from it. The pain was still sharp and I couldn't get comfortable to sit or lay down. Around noon when I was ready for another dose I decided to make it a double. That did the trick. I had a pretty good buzz going all afternoon, and while I couldn't sleep it off, I did manage to lay on my back in a semi-conscious daze. Hopefully I'll be able to get to sleep tonight without heading to the medicine cabinet tonight, but I don't think its going to happen. Well...at least everything else seems to be going well. I was able to do some grilling tonight and play baseball with Isaiah. So despite the pain I am getting back to normal a little bit. It will be great if I can stay energized and feeling good for the next week and a half.
I just spent a lot of time writing out a journal update to only have it lost. I hate when that happens. Oh well...time to retype my thoughts.
First...thanks to those who have written on my guestbook. I check that periodically and definitely appreciate all of the support and prayers people have sent out.
Today is day 11 in this round of chemo therapy. Last time around I started losing my hair at day 15, so I don't have much time left to enjoy my beautiful head. This time of the cycle is pretty boring. At this point I've started to regain my energy and the frequent and uncomfortable trips to the bathroom have subsided. I take a bunch of pills every day, and give myself a shot of neupogen every night.
Neupogen is a drug that stimulates growth of neutrophils in the bone marrow. Since the chemotherapy can wipe my white blood cell count down to dangerous levels, this drug is important to help my immune system rebound. Giving myself the shot isn't such a bad deal. I just have to inject it into the skin and not the vein, and after a few dozen times it becomes pretty routine.
The drawback of the Neupogen shot is it causes bone pain. The pain is usually a dull pain that is frequently in my shin, thigh, shoulder, or jaw. Unfortunately for me today I had the pain in my lower back where the spine meets the pelvis. Not only was the pain in an uncomfortable place, but it was as sharp as I've ever felt. I spent the early morning shifting positions trying to get comfortable, but nothing seemed to work.
I don't care for drugs and usually try to tough things out. However, I decided to hit up the oxycodone that was prescribed to me. I took one pill in the morning and felt absolutely no effect from it. The pain was still sharp and I couldn't get comfortable to sit or lay down. Around noon when I was ready for another dose I decided to make it a double. That did the trick. I had a pretty good buzz going all afternoon, and while I couldn't sleep it off, I did manage to lay on my back in a semi-conscious daze. Hopefully I'll be able to get to sleep tonight without heading to the medicine cabinet tonight, but I don't think its going to happen. Well...at least everything else seems to be going well. I was able to do some grilling tonight and play baseball with Isaiah. So despite the pain I am getting back to normal a little bit. It will be great if I can stay energized and feeling good for the next week and a half.
Nausea and Vomiting
FRIDAY, AUGUST 08, 2008 01:47 PM, CDT
Its Friday, which probably means the end of another work week to most people, but is just another day in my life right now. The good news is that I'm awake right now and feeling good.
Yesterday morning I got hit with some nausea. Its definitely an uncomfortable feeling to wake up to, so I tried to take some anti-nausea medicine to help quell the feeling. So I head downstairs with Isaiah to get some liquid and pills in me. I get the anti-nausea medication in my system before Isaiah asks for some blueberries. While dishing out blueberries for the lil guy I realize that things aren't going to stay down in my stomach. As soon as Isaiah got his berries, it was up the stairs for me and into the bathroom. Vomiting ensued!!!
That sucked! I'm a puker...always have been and always will. Throwing up doesn't bother me. However, usually if I'm feeling sick and throw up, I feel better after that. Nausea doesn't really ease up like that. The discomfort in the chest is still there desipte the heaving. And what benefit do I get from the nausea medication now that it has been expelled from my stomach and flushed down the toilet?
Luckily I remembered this experience from last September and had asked the nurse practicioner at NIH for Lorazepam, a drug that is prescribed for anxiety but also does a hell of a good job preventing nausea. I was able to take some of the Lorazepam, and drowsiness as a side effect is an understatement. I layed flat on my stomach, cause thats the only good position with the nausea, and fell asleep for the entire day.
When I woke up my child was missing. Fortunately he is just with his grandparents, who I assume are responsible for his care. My parents stopped by while I was passed, and I remember them saying something to me. I believe I responded as well, but they might not have heard my muffled thoughts with my head buried in a pillow. Thankfully they have helped out with Isaiah, who gets easily bored when Daddy sleeps all day and can't play around.
Well...I got out of the house to get my blood drawn today, and have been awake since the morning. Unfortunately I feel like my energy is waning and its time for another nap. Feeling like I am right now, its hard to believe that I worked like this last year. Looking back on it now I'm impressed how hard I worked through that, because it certainly isn't easy.
Its Friday, which probably means the end of another work week to most people, but is just another day in my life right now. The good news is that I'm awake right now and feeling good.
Yesterday morning I got hit with some nausea. Its definitely an uncomfortable feeling to wake up to, so I tried to take some anti-nausea medicine to help quell the feeling. So I head downstairs with Isaiah to get some liquid and pills in me. I get the anti-nausea medication in my system before Isaiah asks for some blueberries. While dishing out blueberries for the lil guy I realize that things aren't going to stay down in my stomach. As soon as Isaiah got his berries, it was up the stairs for me and into the bathroom. Vomiting ensued!!!
That sucked! I'm a puker...always have been and always will. Throwing up doesn't bother me. However, usually if I'm feeling sick and throw up, I feel better after that. Nausea doesn't really ease up like that. The discomfort in the chest is still there desipte the heaving. And what benefit do I get from the nausea medication now that it has been expelled from my stomach and flushed down the toilet?
Luckily I remembered this experience from last September and had asked the nurse practicioner at NIH for Lorazepam, a drug that is prescribed for anxiety but also does a hell of a good job preventing nausea. I was able to take some of the Lorazepam, and drowsiness as a side effect is an understatement. I layed flat on my stomach, cause thats the only good position with the nausea, and fell asleep for the entire day.
When I woke up my child was missing. Fortunately he is just with his grandparents, who I assume are responsible for his care. My parents stopped by while I was passed, and I remember them saying something to me. I believe I responded as well, but they might not have heard my muffled thoughts with my head buried in a pillow. Thankfully they have helped out with Isaiah, who gets easily bored when Daddy sleeps all day and can't play around.
Well...I got out of the house to get my blood drawn today, and have been awake since the morning. Unfortunately I feel like my energy is waning and its time for another nap. Feeling like I am right now, its hard to believe that I worked like this last year. Looking back on it now I'm impressed how hard I worked through that, because it certainly isn't easy.
Chemotherapy Update
WEDNESDAY, AUGUST 06, 2008 03:25 PM, CDT
Today is Wednesday...Day 6 in this round of chemotherapy. Yesterday I spent several hours at the hospital receiving the last of my chemotherapy. After that I had the PICC line, 52 cms of catheter, removed from my veins and was sent on my way. Since leaving the hospital on Friday, the process has felt pretty uneventful. It hasn't been that long since I had chemo, and it unfortunately rushes back into your consciousness quickly. While its a crappy experience, it feels almost normal to me.
Today I am exhausted. Part of the chemotherapy is taking a steroid called Prednisone. It gives me a huge hunger, which isn't a bad thing since I love to eat, and a lot of energy. However, my final dose of prednisone was last night, and this morning I could do nothing but sleep. Without the steroids in my system, I truly feel how much these drugs beat the body down. It sucks to feel worthless, and I've got some of that going on. I can still do some of the daddy stuff with Isaiah and help out a miniscule amount around the house, but not much.
Don't know what else to write. I think I could write a novel about how the chemo messes with the usual bodily functions, but I know not everybody will be interested in that. I think I'll keep the posting here clean and get back to napping.
Today is Wednesday...Day 6 in this round of chemotherapy. Yesterday I spent several hours at the hospital receiving the last of my chemotherapy. After that I had the PICC line, 52 cms of catheter, removed from my veins and was sent on my way. Since leaving the hospital on Friday, the process has felt pretty uneventful. It hasn't been that long since I had chemo, and it unfortunately rushes back into your consciousness quickly. While its a crappy experience, it feels almost normal to me.
Today I am exhausted. Part of the chemotherapy is taking a steroid called Prednisone. It gives me a huge hunger, which isn't a bad thing since I love to eat, and a lot of energy. However, my final dose of prednisone was last night, and this morning I could do nothing but sleep. Without the steroids in my system, I truly feel how much these drugs beat the body down. It sucks to feel worthless, and I've got some of that going on. I can still do some of the daddy stuff with Isaiah and help out a miniscule amount around the house, but not much.
Don't know what else to write. I think I could write a novel about how the chemo messes with the usual bodily functions, but I know not everybody will be interested in that. I think I'll keep the posting here clean and get back to napping.
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