Before we watch one of the greatest classics of all time, Ghostbusters, I thought I'd make a post. That's right...I ain't afraid 'a no ghost. Anyhoo, this post actually is going to highlight what was talked about in the previous post's comments.
We've had a lot of people asking about getting checked for bone marrow matches. And we can't tell you how much we appreciate you guys volunteering to do this. While the chances are slim that you'll match me, you could be helping to save someone else's life down the road. Or, you could end up matching me! There's a less than 1% chance, but that's better than nothing.
Donna has done some research and she talked about it in the comments in my previous post, but for those that missed it...here's what you can do:
Go to this website: www.marrow.org and sign up. Doing this for a fee of $52.00 they will send you a tissue typing kit. That consists of several swabs that are then used to collect DNA. They are then sent back to their labs. You will then be part of the National Bone Marrow Registry.
In addition, Angie is trying to put together a bone marrow drive at ND for those that are interested. More information on that can be found here: http://friendsofjonathonrose.blogspot.com/
Thank you very much Angie for working on that, and I really hope it works out! We feel so blessed to have everyone's support in this. We also feel that everyone is fighting the good fight right along side me, and I can't thank everyone enough for what they've done. It's going to be a long road through the next few months, but we're driving full steam ahead.
I do not yet have confirmation of a match from my doctors in Chicago yet, but hopefully by next week when we meet, they may have a few possible matches. I don't know. Being that I'm a white, Caucasian man, my chances on finding a match are pretty good, according to my doctors. Let's hope this is the case.
Okay...now I have some serious treatment to attend to with Bill Murray and the Ectomobile. Peace in. Jonathon out.
Friday, February 27, 2009
Day 36: The Unknowns Ahead
My stomach decided it was going to wake me up again this morning at 1:04am, so now that I'm up, I figured I'd squeeze in a post before trying to go back to sleep. I'll admit, upon hearing the news Wednesday, I was very emotional and afraid of what was to come. But my doctors are still optimistic, both Dr. Park and Dr. Artz from Chicago. They both told me that, while this isn't the news they were hoping for, it's expected, and plan B is in place already. Plan B is starting next week with 4 days straight of chemo with one trip to Chicago included. That's 3 days here and 1 day there in Chicago getting chemo and having some pre-bone marrow transplant tests. As Katie mentioned in the previous post, my Mom and Dad will be both be going to be tested as well. We're still trying to organize a way for those people who want to contribute to doing that too. Katie and I are working on those details. We know people want to help out and get tested, and for that, we are truly grateful. Chances are, you may not come back as a match for me, but someone else in dire need could have their life saved by you.
As the next couple of days go by, we'll have more information on what we're going to do and our next course of actions.
I still have Leukemia, but it doesn't have me. I have too much I want to accomplish in this life for this to get me down. Yeah, I'm scared about this next course in treatment, but I'm also hopeful that between my strength and the determination of my doctors, there's no reason why I can't beat this.
Thank you again for all the support that's been displayed here in comments. It really helps keep me going and gives me courage to be stronger to face the unknowns ahead.
As the next couple of days go by, we'll have more information on what we're going to do and our next course of actions.
I still have Leukemia, but it doesn't have me. I have too much I want to accomplish in this life for this to get me down. Yeah, I'm scared about this next course in treatment, but I'm also hopeful that between my strength and the determination of my doctors, there's no reason why I can't beat this.
Thank you again for all the support that's been displayed here in comments. It really helps keep me going and gives me courage to be stronger to face the unknowns ahead.
Wednesday, February 25, 2009
A little different road than expected
Well, the news today was definitely not expected based on how things had been going. Today, Jonathon's doctor in Chicago called and said that his bone marrow biopsy on Monday showed that Jonathon still has leukemia. So he will need a bone marrow transplant.
The good news is that even though his sister Jenna is not a match, they did search the registry, and there are a few matches for him. Also when they do the bone marrow transplant, that would mean he'd get better faster, and probably not need three years of chemo. The not as good news is that these matches may be anywhere in the world, so to try to get things moving a little faster, they will test Jonathon's mom and dad on Wednesday. They are only a 1% chance of matching, so they don't really expect them to match, but just in case, they will check. If Peggy or Bob don't match, they will work with the registry to find out where these other people are and coordinate a donation.
A lot of you offered to get tested for a bone marrow match when this all first started, and while we are so touched that so many of you are willing to do this, since there are already matches in the registry, we don't need you to do this.
What we do need is your continued prayers and positive thoughts. We are so lucky to have so many special people in our lives, and we know we're going to need to lean on you, especially since the road ahead keeps changing on us. Thank you for being there for us.
The good news is that even though his sister Jenna is not a match, they did search the registry, and there are a few matches for him. Also when they do the bone marrow transplant, that would mean he'd get better faster, and probably not need three years of chemo. The not as good news is that these matches may be anywhere in the world, so to try to get things moving a little faster, they will test Jonathon's mom and dad on Wednesday. They are only a 1% chance of matching, so they don't really expect them to match, but just in case, they will check. If Peggy or Bob don't match, they will work with the registry to find out where these other people are and coordinate a donation.
A lot of you offered to get tested for a bone marrow match when this all first started, and while we are so touched that so many of you are willing to do this, since there are already matches in the registry, we don't need you to do this.
What we do need is your continued prayers and positive thoughts. We are so lucky to have so many special people in our lives, and we know we're going to need to lean on you, especially since the road ahead keeps changing on us. Thank you for being there for us.
Tuesday, February 24, 2009
Day 33: Milkshakes Bad for the Tummy
Apart from the freezing morning temperatures, today wasn't too bad of a day, really. It's my second day without Predisone and I think I'm starting to feel the effects of not taking it. My energy came at times today and then went, just as quick as it came. I was able to get up and around though, moreso than over the weekend. I washed a few dishes, got the mail, did some laundry, and even chased down a UPS driver for a package. (They always try to get away so fast when they think no one is home to sign for it!) Next time I think I'm just going to let Maya out and let her chase him/her down. We all know how much dogs like delivery drivers. I swear, dogs can smell that truck coming before they even hear it.
My neuropathy (numbness/tingliness) has returned kind of fierce today too. My guess is that its from the hit of chemo I had in my spine yesterday. It's making it hard for me to keep typing, so this post will be a little short.
Since I'm not receiving as much chemo this week and next week, I expect to start feeling a little better too. At least I hope. And I need to start gaining weight. I did eat quite a bit today too. Although I had two milkshakes that upset my stomach pretty bad...so I'm not sure how much of those I'm going to continue drinking. For those that don't know, I'm lactose intolerant, so dairy products never agree with me without taking a pill beforehand. And since my stomach is already off from the chemo, it's even worse trying to keep it stable with milkshakes. (I already drink Lactaid milk and used that with the shakes.) I might have to search for a suitable replacement.
My neuropathy (numbness/tingliness) has returned kind of fierce today too. My guess is that its from the hit of chemo I had in my spine yesterday. It's making it hard for me to keep typing, so this post will be a little short.
Since I'm not receiving as much chemo this week and next week, I expect to start feeling a little better too. At least I hope. And I need to start gaining weight. I did eat quite a bit today too. Although I had two milkshakes that upset my stomach pretty bad...so I'm not sure how much of those I'm going to continue drinking. For those that don't know, I'm lactose intolerant, so dairy products never agree with me without taking a pill beforehand. And since my stomach is already off from the chemo, it's even worse trying to keep it stable with milkshakes. (I already drink Lactaid milk and used that with the shakes.) I might have to search for a suitable replacement.
Monday, February 23, 2009
Day 32: Chicago Day
After a long morning and drive to Chicago, we've made it home once again. We arrived there around 7am and almost immediately the tests started. First, I had to have some blood drawn to find out where those counts were. My hemoglobin had risen up to 9.2, up from 8.4 on Friday, so they didn't feel that I needed a blood transfusion. So that was good news. Then, I had to do another bone marrow biopsy. This time it was a little more painful than the last one. I guess it must just depend on how much they need to dig around in there. After the biopsy, I had to do the lumbar puncture (spinal tap with chemo.) Which, wasn't as bad as the biopsy, but still very uncomfortable. Once that was over, I just had to lay still for an hour in a bed so I wouldn't develop any worse side effects. Then, we packed it in and headed home.
Overall the day hasn't been too bad. I still feel very fatigued, but not as bad as I was over the weekend. Today is my first day without Predisone and so far, I'm slowly feeling a little more normal. In addition to that, I was cleared to stop taking several other meds as well, so hopefully this will help stabilize my body a little bit more, and I'll start to feel even more like normal. Time will tell. They did tell me that this would be an 'adjustment' week for me as far as how I'll feel. I won't be taking as many drugs, so my body is going to have to do some fighting of its own. Which, I think is a good thing. Bring it on. I'm ready. I weighed around 155 pounds this morning. Which is way down from where I was a few months ago. Back in November, I weighed 193, so I have some eating to do. My wife and company are helping me find foods that are heavy in protein to help rebuild my muscles and body fat. I just need to keep eating!
My next appointment will be in Chicago with my doctor on March 4th. So far, that appointment involves no treatment and as far as we know is just going to be a discussion of my progress. We won't know the results from the tests today until later in the week, but hopefully my bone marrow biopsy will show that my Leukemia is in remission!
Overall the day hasn't been too bad. I still feel very fatigued, but not as bad as I was over the weekend. Today is my first day without Predisone and so far, I'm slowly feeling a little more normal. In addition to that, I was cleared to stop taking several other meds as well, so hopefully this will help stabilize my body a little bit more, and I'll start to feel even more like normal. Time will tell. They did tell me that this would be an 'adjustment' week for me as far as how I'll feel. I won't be taking as many drugs, so my body is going to have to do some fighting of its own. Which, I think is a good thing. Bring it on. I'm ready. I weighed around 155 pounds this morning. Which is way down from where I was a few months ago. Back in November, I weighed 193, so I have some eating to do. My wife and company are helping me find foods that are heavy in protein to help rebuild my muscles and body fat. I just need to keep eating!
My next appointment will be in Chicago with my doctor on March 4th. So far, that appointment involves no treatment and as far as we know is just going to be a discussion of my progress. We won't know the results from the tests today until later in the week, but hopefully my bone marrow biopsy will show that my Leukemia is in remission!
Sunday, February 22, 2009
Day 31: A Better Day
Yesterday was probably the hardest day I've ever had to face since this all started. I felt the ill effects of the Benedryl and Ambien working against me all day. I could hardly walk to the bathroom. I felt extremely groggy and fatiqued. My appetite wasn't affected fortunately, as I did keep eating pretty good throughout the day. I'm sure some of that was the Predisone helping, but either way, I knew I had to eat to get my energy levels back to a liveable level. There were times I would be laying on the couch and I couldn't even lift my head, I was so tired. I didn't nap at all during the day for fear of not being able to sleep last night. Instead of the Benedryl, I just took my regular dose of Ambien and went to sleep. I slept from about 11pm to 5am. I'm awake now, but I don't feel as weak as I did yesterday thankfully. Hopefully, my strength will continue to return as the hours go by today.
I'd also like to thank Darlene for all the wonderful things she's made in the last few weeks for me. The cupcakes were my favorite and are now gone, and the cookies have been wonderful too. Thank you very much for those! Sweet things typically aren't tasting good right now, but those cupcakes went down so good!
Today is my last day on my evil nemesis drug, Predisone. They're telling me that once I stop taking it, my body will likely crash a day or two later, but that is normal and it's time for my body to start working for itself again. I'm not looking forward to that, but I am looking forward to just being off of the drug itself, and feeling a little more normal and not so emotional all the time. It'll be nice not to have the urge to cry all the time! Damn drug has made me crazy! But all that ends today!
Tomorrow, we venture back to Chicago for my big day. We have to be there early around 7am...ack. I'll be getting a bone marrow biopsy to see if my treatment has sent my Leukemia into remission, and that new, cancer free cells have started to grow on their own. I'll probably be getting a blood transfusion as well, depending on what the labs say for my blood levels. And lastly, they'll be doing a spinal tap with chemo as well, but we believe that is all. We don't think (according to my schedule of stuff) that I'll be getting the regular 'Monday regimen of chemo'....just the spinal tap only. But we will see tomorrow. Unfortunatley, the results from the bone marrow biopsy (the one test we're the most interested in) won't be in for a few days afterward, as it takes 2-3 days to determine the results. We have to keep in mind that the last biopsy I had showed no Leukemia cells, which was great news, so there shouldn't be any reason why the new biopsy should say anything different. We're just hoping that new, cancer-free cell growth has started where the Leukemia was. If that's the outcome this week, I'll be able to say my cancer is in remission, and that's big.
I'd also like to thank Darlene for all the wonderful things she's made in the last few weeks for me. The cupcakes were my favorite and are now gone, and the cookies have been wonderful too. Thank you very much for those! Sweet things typically aren't tasting good right now, but those cupcakes went down so good!
Today is my last day on my evil nemesis drug, Predisone. They're telling me that once I stop taking it, my body will likely crash a day or two later, but that is normal and it's time for my body to start working for itself again. I'm not looking forward to that, but I am looking forward to just being off of the drug itself, and feeling a little more normal and not so emotional all the time. It'll be nice not to have the urge to cry all the time! Damn drug has made me crazy! But all that ends today!
Tomorrow, we venture back to Chicago for my big day. We have to be there early around 7am...ack. I'll be getting a bone marrow biopsy to see if my treatment has sent my Leukemia into remission, and that new, cancer free cells have started to grow on their own. I'll probably be getting a blood transfusion as well, depending on what the labs say for my blood levels. And lastly, they'll be doing a spinal tap with chemo as well, but we believe that is all. We don't think (according to my schedule of stuff) that I'll be getting the regular 'Monday regimen of chemo'....just the spinal tap only. But we will see tomorrow. Unfortunatley, the results from the bone marrow biopsy (the one test we're the most interested in) won't be in for a few days afterward, as it takes 2-3 days to determine the results. We have to keep in mind that the last biopsy I had showed no Leukemia cells, which was great news, so there shouldn't be any reason why the new biopsy should say anything different. We're just hoping that new, cancer-free cell growth has started where the Leukemia was. If that's the outcome this week, I'll be able to say my cancer is in remission, and that's big.
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Friday, February 27, 2009
Day 37: Bone Marrow Info
Before we watch one of the greatest classics of all time, Ghostbusters, I thought I'd make a post. That's right...I ain't afraid 'a no ghost. Anyhoo, this post actually is going to highlight what was talked about in the previous post's comments.
We've had a lot of people asking about getting checked for bone marrow matches. And we can't tell you how much we appreciate you guys volunteering to do this. While the chances are slim that you'll match me, you could be helping to save someone else's life down the road. Or, you could end up matching me! There's a less than 1% chance, but that's better than nothing.
Donna has done some research and she talked about it in the comments in my previous post, but for those that missed it...here's what you can do:
Go to this website: www.marrow.org and sign up. Doing this for a fee of $52.00 they will send you a tissue typing kit. That consists of several swabs that are then used to collect DNA. They are then sent back to their labs. You will then be part of the National Bone Marrow Registry.
In addition, Angie is trying to put together a bone marrow drive at ND for those that are interested. More information on that can be found here: http://friendsofjonathonrose.blogspot.com/
Thank you very much Angie for working on that, and I really hope it works out! We feel so blessed to have everyone's support in this. We also feel that everyone is fighting the good fight right along side me, and I can't thank everyone enough for what they've done. It's going to be a long road through the next few months, but we're driving full steam ahead.
I do not yet have confirmation of a match from my doctors in Chicago yet, but hopefully by next week when we meet, they may have a few possible matches. I don't know. Being that I'm a white, Caucasian man, my chances on finding a match are pretty good, according to my doctors. Let's hope this is the case.
Okay...now I have some serious treatment to attend to with Bill Murray and the Ectomobile. Peace in. Jonathon out.
We've had a lot of people asking about getting checked for bone marrow matches. And we can't tell you how much we appreciate you guys volunteering to do this. While the chances are slim that you'll match me, you could be helping to save someone else's life down the road. Or, you could end up matching me! There's a less than 1% chance, but that's better than nothing.
Donna has done some research and she talked about it in the comments in my previous post, but for those that missed it...here's what you can do:
Go to this website: www.marrow.org and sign up. Doing this for a fee of $52.00 they will send you a tissue typing kit. That consists of several swabs that are then used to collect DNA. They are then sent back to their labs. You will then be part of the National Bone Marrow Registry.
In addition, Angie is trying to put together a bone marrow drive at ND for those that are interested. More information on that can be found here: http://friendsofjonathonrose.blogspot.com/
Thank you very much Angie for working on that, and I really hope it works out! We feel so blessed to have everyone's support in this. We also feel that everyone is fighting the good fight right along side me, and I can't thank everyone enough for what they've done. It's going to be a long road through the next few months, but we're driving full steam ahead.
I do not yet have confirmation of a match from my doctors in Chicago yet, but hopefully by next week when we meet, they may have a few possible matches. I don't know. Being that I'm a white, Caucasian man, my chances on finding a match are pretty good, according to my doctors. Let's hope this is the case.
Okay...now I have some serious treatment to attend to with Bill Murray and the Ectomobile. Peace in. Jonathon out.
Day 36: The Unknowns Ahead
My stomach decided it was going to wake me up again this morning at 1:04am, so now that I'm up, I figured I'd squeeze in a post before trying to go back to sleep. I'll admit, upon hearing the news Wednesday, I was very emotional and afraid of what was to come. But my doctors are still optimistic, both Dr. Park and Dr. Artz from Chicago. They both told me that, while this isn't the news they were hoping for, it's expected, and plan B is in place already. Plan B is starting next week with 4 days straight of chemo with one trip to Chicago included. That's 3 days here and 1 day there in Chicago getting chemo and having some pre-bone marrow transplant tests. As Katie mentioned in the previous post, my Mom and Dad will be both be going to be tested as well. We're still trying to organize a way for those people who want to contribute to doing that too. Katie and I are working on those details. We know people want to help out and get tested, and for that, we are truly grateful. Chances are, you may not come back as a match for me, but someone else in dire need could have their life saved by you.
As the next couple of days go by, we'll have more information on what we're going to do and our next course of actions.
I still have Leukemia, but it doesn't have me. I have too much I want to accomplish in this life for this to get me down. Yeah, I'm scared about this next course in treatment, but I'm also hopeful that between my strength and the determination of my doctors, there's no reason why I can't beat this.
Thank you again for all the support that's been displayed here in comments. It really helps keep me going and gives me courage to be stronger to face the unknowns ahead.
As the next couple of days go by, we'll have more information on what we're going to do and our next course of actions.
I still have Leukemia, but it doesn't have me. I have too much I want to accomplish in this life for this to get me down. Yeah, I'm scared about this next course in treatment, but I'm also hopeful that between my strength and the determination of my doctors, there's no reason why I can't beat this.
Thank you again for all the support that's been displayed here in comments. It really helps keep me going and gives me courage to be stronger to face the unknowns ahead.
Wednesday, February 25, 2009
A little different road than expected
Well, the news today was definitely not expected based on how things had been going. Today, Jonathon's doctor in Chicago called and said that his bone marrow biopsy on Monday showed that Jonathon still has leukemia. So he will need a bone marrow transplant.
The good news is that even though his sister Jenna is not a match, they did search the registry, and there are a few matches for him. Also when they do the bone marrow transplant, that would mean he'd get better faster, and probably not need three years of chemo. The not as good news is that these matches may be anywhere in the world, so to try to get things moving a little faster, they will test Jonathon's mom and dad on Wednesday. They are only a 1% chance of matching, so they don't really expect them to match, but just in case, they will check. If Peggy or Bob don't match, they will work with the registry to find out where these other people are and coordinate a donation.
A lot of you offered to get tested for a bone marrow match when this all first started, and while we are so touched that so many of you are willing to do this, since there are already matches in the registry, we don't need you to do this.
What we do need is your continued prayers and positive thoughts. We are so lucky to have so many special people in our lives, and we know we're going to need to lean on you, especially since the road ahead keeps changing on us. Thank you for being there for us.
The good news is that even though his sister Jenna is not a match, they did search the registry, and there are a few matches for him. Also when they do the bone marrow transplant, that would mean he'd get better faster, and probably not need three years of chemo. The not as good news is that these matches may be anywhere in the world, so to try to get things moving a little faster, they will test Jonathon's mom and dad on Wednesday. They are only a 1% chance of matching, so they don't really expect them to match, but just in case, they will check. If Peggy or Bob don't match, they will work with the registry to find out where these other people are and coordinate a donation.
A lot of you offered to get tested for a bone marrow match when this all first started, and while we are so touched that so many of you are willing to do this, since there are already matches in the registry, we don't need you to do this.
What we do need is your continued prayers and positive thoughts. We are so lucky to have so many special people in our lives, and we know we're going to need to lean on you, especially since the road ahead keeps changing on us. Thank you for being there for us.
Tuesday, February 24, 2009
Day 33: Milkshakes Bad for the Tummy
Apart from the freezing morning temperatures, today wasn't too bad of a day, really. It's my second day without Predisone and I think I'm starting to feel the effects of not taking it. My energy came at times today and then went, just as quick as it came. I was able to get up and around though, moreso than over the weekend. I washed a few dishes, got the mail, did some laundry, and even chased down a UPS driver for a package. (They always try to get away so fast when they think no one is home to sign for it!) Next time I think I'm just going to let Maya out and let her chase him/her down. We all know how much dogs like delivery drivers. I swear, dogs can smell that truck coming before they even hear it.
My neuropathy (numbness/tingliness) has returned kind of fierce today too. My guess is that its from the hit of chemo I had in my spine yesterday. It's making it hard for me to keep typing, so this post will be a little short.
Since I'm not receiving as much chemo this week and next week, I expect to start feeling a little better too. At least I hope. And I need to start gaining weight. I did eat quite a bit today too. Although I had two milkshakes that upset my stomach pretty bad...so I'm not sure how much of those I'm going to continue drinking. For those that don't know, I'm lactose intolerant, so dairy products never agree with me without taking a pill beforehand. And since my stomach is already off from the chemo, it's even worse trying to keep it stable with milkshakes. (I already drink Lactaid milk and used that with the shakes.) I might have to search for a suitable replacement.
My neuropathy (numbness/tingliness) has returned kind of fierce today too. My guess is that its from the hit of chemo I had in my spine yesterday. It's making it hard for me to keep typing, so this post will be a little short.
Since I'm not receiving as much chemo this week and next week, I expect to start feeling a little better too. At least I hope. And I need to start gaining weight. I did eat quite a bit today too. Although I had two milkshakes that upset my stomach pretty bad...so I'm not sure how much of those I'm going to continue drinking. For those that don't know, I'm lactose intolerant, so dairy products never agree with me without taking a pill beforehand. And since my stomach is already off from the chemo, it's even worse trying to keep it stable with milkshakes. (I already drink Lactaid milk and used that with the shakes.) I might have to search for a suitable replacement.
Monday, February 23, 2009
Day 32: Chicago Day
After a long morning and drive to Chicago, we've made it home once again. We arrived there around 7am and almost immediately the tests started. First, I had to have some blood drawn to find out where those counts were. My hemoglobin had risen up to 9.2, up from 8.4 on Friday, so they didn't feel that I needed a blood transfusion. So that was good news. Then, I had to do another bone marrow biopsy. This time it was a little more painful than the last one. I guess it must just depend on how much they need to dig around in there. After the biopsy, I had to do the lumbar puncture (spinal tap with chemo.) Which, wasn't as bad as the biopsy, but still very uncomfortable. Once that was over, I just had to lay still for an hour in a bed so I wouldn't develop any worse side effects. Then, we packed it in and headed home.
Overall the day hasn't been too bad. I still feel very fatigued, but not as bad as I was over the weekend. Today is my first day without Predisone and so far, I'm slowly feeling a little more normal. In addition to that, I was cleared to stop taking several other meds as well, so hopefully this will help stabilize my body a little bit more, and I'll start to feel even more like normal. Time will tell. They did tell me that this would be an 'adjustment' week for me as far as how I'll feel. I won't be taking as many drugs, so my body is going to have to do some fighting of its own. Which, I think is a good thing. Bring it on. I'm ready. I weighed around 155 pounds this morning. Which is way down from where I was a few months ago. Back in November, I weighed 193, so I have some eating to do. My wife and company are helping me find foods that are heavy in protein to help rebuild my muscles and body fat. I just need to keep eating!
My next appointment will be in Chicago with my doctor on March 4th. So far, that appointment involves no treatment and as far as we know is just going to be a discussion of my progress. We won't know the results from the tests today until later in the week, but hopefully my bone marrow biopsy will show that my Leukemia is in remission!
Overall the day hasn't been too bad. I still feel very fatigued, but not as bad as I was over the weekend. Today is my first day without Predisone and so far, I'm slowly feeling a little more normal. In addition to that, I was cleared to stop taking several other meds as well, so hopefully this will help stabilize my body a little bit more, and I'll start to feel even more like normal. Time will tell. They did tell me that this would be an 'adjustment' week for me as far as how I'll feel. I won't be taking as many drugs, so my body is going to have to do some fighting of its own. Which, I think is a good thing. Bring it on. I'm ready. I weighed around 155 pounds this morning. Which is way down from where I was a few months ago. Back in November, I weighed 193, so I have some eating to do. My wife and company are helping me find foods that are heavy in protein to help rebuild my muscles and body fat. I just need to keep eating!
My next appointment will be in Chicago with my doctor on March 4th. So far, that appointment involves no treatment and as far as we know is just going to be a discussion of my progress. We won't know the results from the tests today until later in the week, but hopefully my bone marrow biopsy will show that my Leukemia is in remission!
Sunday, February 22, 2009
Day 31: A Better Day
Yesterday was probably the hardest day I've ever had to face since this all started. I felt the ill effects of the Benedryl and Ambien working against me all day. I could hardly walk to the bathroom. I felt extremely groggy and fatiqued. My appetite wasn't affected fortunately, as I did keep eating pretty good throughout the day. I'm sure some of that was the Predisone helping, but either way, I knew I had to eat to get my energy levels back to a liveable level. There were times I would be laying on the couch and I couldn't even lift my head, I was so tired. I didn't nap at all during the day for fear of not being able to sleep last night. Instead of the Benedryl, I just took my regular dose of Ambien and went to sleep. I slept from about 11pm to 5am. I'm awake now, but I don't feel as weak as I did yesterday thankfully. Hopefully, my strength will continue to return as the hours go by today.
I'd also like to thank Darlene for all the wonderful things she's made in the last few weeks for me. The cupcakes were my favorite and are now gone, and the cookies have been wonderful too. Thank you very much for those! Sweet things typically aren't tasting good right now, but those cupcakes went down so good!
Today is my last day on my evil nemesis drug, Predisone. They're telling me that once I stop taking it, my body will likely crash a day or two later, but that is normal and it's time for my body to start working for itself again. I'm not looking forward to that, but I am looking forward to just being off of the drug itself, and feeling a little more normal and not so emotional all the time. It'll be nice not to have the urge to cry all the time! Damn drug has made me crazy! But all that ends today!
Tomorrow, we venture back to Chicago for my big day. We have to be there early around 7am...ack. I'll be getting a bone marrow biopsy to see if my treatment has sent my Leukemia into remission, and that new, cancer free cells have started to grow on their own. I'll probably be getting a blood transfusion as well, depending on what the labs say for my blood levels. And lastly, they'll be doing a spinal tap with chemo as well, but we believe that is all. We don't think (according to my schedule of stuff) that I'll be getting the regular 'Monday regimen of chemo'....just the spinal tap only. But we will see tomorrow. Unfortunatley, the results from the bone marrow biopsy (the one test we're the most interested in) won't be in for a few days afterward, as it takes 2-3 days to determine the results. We have to keep in mind that the last biopsy I had showed no Leukemia cells, which was great news, so there shouldn't be any reason why the new biopsy should say anything different. We're just hoping that new, cancer-free cell growth has started where the Leukemia was. If that's the outcome this week, I'll be able to say my cancer is in remission, and that's big.
I'd also like to thank Darlene for all the wonderful things she's made in the last few weeks for me. The cupcakes were my favorite and are now gone, and the cookies have been wonderful too. Thank you very much for those! Sweet things typically aren't tasting good right now, but those cupcakes went down so good!
Today is my last day on my evil nemesis drug, Predisone. They're telling me that once I stop taking it, my body will likely crash a day or two later, but that is normal and it's time for my body to start working for itself again. I'm not looking forward to that, but I am looking forward to just being off of the drug itself, and feeling a little more normal and not so emotional all the time. It'll be nice not to have the urge to cry all the time! Damn drug has made me crazy! But all that ends today!
Tomorrow, we venture back to Chicago for my big day. We have to be there early around 7am...ack. I'll be getting a bone marrow biopsy to see if my treatment has sent my Leukemia into remission, and that new, cancer free cells have started to grow on their own. I'll probably be getting a blood transfusion as well, depending on what the labs say for my blood levels. And lastly, they'll be doing a spinal tap with chemo as well, but we believe that is all. We don't think (according to my schedule of stuff) that I'll be getting the regular 'Monday regimen of chemo'....just the spinal tap only. But we will see tomorrow. Unfortunatley, the results from the bone marrow biopsy (the one test we're the most interested in) won't be in for a few days afterward, as it takes 2-3 days to determine the results. We have to keep in mind that the last biopsy I had showed no Leukemia cells, which was great news, so there shouldn't be any reason why the new biopsy should say anything different. We're just hoping that new, cancer-free cell growth has started where the Leukemia was. If that's the outcome this week, I'll be able to say my cancer is in remission, and that's big.
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