Hi everyone, long time no talk. As you could imagine there hasn't been much to report on but I will bring you up to speed on the little things that have occurred. When I last left you, the most important thing we needed to have happen was to have my blood counts start to go up. The idea here is to give my body maximum recovery time from the previous two rounds of chemo, which took a pretty hefty toll on my body. My doctors all week have been telling us that my blood counts are pretty much in the basement, but they expect them to turn by the end of the week. And that is pretty much what my morning meetings with the doctors consist of every day. Doc comes in and says, "Blood counts remain low, but you look good. Keep doing what you're doing and we'll expect to see these numbers turn the corner by the end of the week." -Doc (Huge Red Sox fan)
And I respond by saying, "Thanks Doc, sorry about those Red Sox. It was just a lucky 2 series" -Kurt...as I warm up under my bright red Angels blanket Nathan gave me.
Well today I had a little glimmer of hope. I say little because it is very little. My platelet count and white blood cell counts both went up, but in very small amounts. Normally nothing to get excited about, but the fact that the platelets and the white blood cells both went up COULD be a sign of good things to come. Obviously the next few days will be the judge of that, but if this is the case, I'm on the road to recovery my friends. Woohoo. If not, we wait a little longer, big deal. It just means you will all have to be a little more patient on hearing from me...ha, just kidding...
Some post chemo side effects I've been battling with lately are some random headaches, nausea and um...the expected...um...well, bathroom stuff. You get it. Hoping none of that will affect the turning of the blood counts--that's a good question for the doc tomorrow.
That's about it guys. Halos are kicking some serious A$$ right now. Gotta love the roll we are on and then the two trades that are going to mean everything in the playoffs. Bye bye "It's just Manny being Manny" to the National League and hello Gold Glove big bat Mark Texeireirexierxe...or however you spell his damn name. We are stylin' boys and girls. Swept Boston and now we’re gunnin' for the Yanks. Looking good.
Anyway, enough rambling. Good night everyone and thanks for reading. We'll catch up when I get news on the counts.
Thursday, July 31, 2008
Sunday, July 27, 2008
Sunday, July 27th, 2008
Hi everyone,
there’s still not a whole lot of news to report on, but it has been a few days so I figured I'd let you know how I'm doing. Aside from having to manage through a few headaches here and there, everything has been just fine. I feel really good and actually starting to feel stronger due to my 25 minute morning exercises. It's amazing what a half an hour can do for the body and mind. I actually had some muscle soreness the other day what excited me. Never thought some sore back muscles could lift my spirits like they did, but they did and just motivated me for more. That has been a huge part of keeping my attitude and spirits in the right place.
As far as treatment goes and as I wrote earlier, everything is on hold until my blood counts go up. When they do, which should be in 10 days or so, we'll do another bone marrow test as see how much cancer I have left. From there it's either round 3 of chemo or transplant time.
Team Chrome Dome has really gained some momentum and people who I never thought would touch the precious little hairs on their heads, let alone buzz them off, have stepped up and gone chrome. As surprised as I am, I'm not shocked. I know you guys and can't tell you how much I appreciate the showing of support. You really are an amazing group of people and I don't for a second question how lucky I am to have you as my best friends and family. I am one lucky SOB and I know it, so thank you very much.
That's all I got this time around. As news comes up I will relay to all of you as always. Thanks again for your support by reading my posts and posting messages yourselves. They mean a lot to me and go a long way on my end.
Take care and be well. We'll catch up soon.
there’s still not a whole lot of news to report on, but it has been a few days so I figured I'd let you know how I'm doing. Aside from having to manage through a few headaches here and there, everything has been just fine. I feel really good and actually starting to feel stronger due to my 25 minute morning exercises. It's amazing what a half an hour can do for the body and mind. I actually had some muscle soreness the other day what excited me. Never thought some sore back muscles could lift my spirits like they did, but they did and just motivated me for more. That has been a huge part of keeping my attitude and spirits in the right place.
As far as treatment goes and as I wrote earlier, everything is on hold until my blood counts go up. When they do, which should be in 10 days or so, we'll do another bone marrow test as see how much cancer I have left. From there it's either round 3 of chemo or transplant time.
Team Chrome Dome has really gained some momentum and people who I never thought would touch the precious little hairs on their heads, let alone buzz them off, have stepped up and gone chrome. As surprised as I am, I'm not shocked. I know you guys and can't tell you how much I appreciate the showing of support. You really are an amazing group of people and I don't for a second question how lucky I am to have you as my best friends and family. I am one lucky SOB and I know it, so thank you very much.
That's all I got this time around. As news comes up I will relay to all of you as always. Thanks again for your support by reading my posts and posting messages yourselves. They mean a lot to me and go a long way on my end.
Take care and be well. We'll catch up soon.
Friday, July 25, 2008
Thursday, July 24th, 2008
Happy birthday big bro and Paulina. I bet the two of you never thought you would celebrate your birthdays with 10 people crammed in a hospital room in La Jolla. Well, it's all about the people at the party so it was a great time. I hope you enjoyed it. Steak and Guinness on me when I get out of here, maybe a few...of each.
So I wanted to give you all a bit of a deeper dive into the information about the transplant donors. I met again with the doctor today and the news is really good. Apparently I was a perfect 10 out of 10 match with 15 people in the database which was a first. The doc said he had never seen anything like it, so what was initially bad news with my brother's non-match turned into great news with the unrelated match. They now have the luxury of fine tuning the match with three extra pieces of criteria...gender, age and blood type which brought us down to a short list of 3 people. To make the situation even more ideal, these three donors have already gone through the 3 weeks of pre-transplant tests so from a timing perspective, it couldn't be better. Good stuff all around.
So what I need to do now is get into remission. It's that simple. If round 2 puts me there I could be looking at a transplant start timeline of 6 weeks which would be absolutely phenomenal. If I end up needing a 3rd round to get into remission which is a possibility, that timeline could be pushed out by a month or so. But to be quite honest with you, that will be a very easy month knowing I have 3 "perfect" matches waiting for me when I do eventually hit remission. For now focusing on a round 2 success, the donor situation made a round 3 scenario that much more tolerable.
As far as my condition goes, things are good. I'm really enjoying my short but effective morning workouts with the weights and I have had very little all around discomfort. I still get headaches every now and then but those get taken care of pretty quickly with the assortment of remedies they have stocked up down here. The worst part about this whole situation is not being able to read a book outside in the sun breathing in fresh air. That is the number 1 thing I miss most, but I know those days are right around the corner.
Thanks for reading everyone, take care and be well.
So I wanted to give you all a bit of a deeper dive into the information about the transplant donors. I met again with the doctor today and the news is really good. Apparently I was a perfect 10 out of 10 match with 15 people in the database which was a first. The doc said he had never seen anything like it, so what was initially bad news with my brother's non-match turned into great news with the unrelated match. They now have the luxury of fine tuning the match with three extra pieces of criteria...gender, age and blood type which brought us down to a short list of 3 people. To make the situation even more ideal, these three donors have already gone through the 3 weeks of pre-transplant tests so from a timing perspective, it couldn't be better. Good stuff all around.
So what I need to do now is get into remission. It's that simple. If round 2 puts me there I could be looking at a transplant start timeline of 6 weeks which would be absolutely phenomenal. If I end up needing a 3rd round to get into remission which is a possibility, that timeline could be pushed out by a month or so. But to be quite honest with you, that will be a very easy month knowing I have 3 "perfect" matches waiting for me when I do eventually hit remission. For now focusing on a round 2 success, the donor situation made a round 3 scenario that much more tolerable.
As far as my condition goes, things are good. I'm really enjoying my short but effective morning workouts with the weights and I have had very little all around discomfort. I still get headaches every now and then but those get taken care of pretty quickly with the assortment of remedies they have stocked up down here. The worst part about this whole situation is not being able to read a book outside in the sun breathing in fresh air. That is the number 1 thing I miss most, but I know those days are right around the corner.
Thanks for reading everyone, take care and be well.
Tuesday, July 22, 2008
Tuesday, July 22nd, 2008
Good evening everyone, so we finally have some news for you. Unfortunately my big bro is a no go on bone marrow matching with me, but all is not lost. It turns out that I have an unusually high number of potential matches. For the last two weeks my doctors and their staff have been going into the unrelated donor database doing some pre-work, and that pre-word has already vetted out a short list of high probability matches. The doctors pretty much said verbatim that I have an abnormally high amount of matches in the database and the outlook is extremely good for a solid match. So Steve, I know how much you wanted that to happen as did I and everyone else, but we are going to be ok. So now it's all about working that list down to a short list of the best possible candidates, locating them and figuring out how it will work logistically. It will mean a short and inconvenient interruption on the donor’s immediate lives, but the hope is that they are ok with that given they are on the list. No timeline yet, but will be trying to nail one down soon.
I know many of you have been asking about how you can donate bone marrow. The answer is you can and it is very easy. We spoke with the nurses here today and they said they are in bad need of blood, platelets and bone marrow. I have been lucky enough to always have it on hand when I need a transfusion or even now with the bone marrow, but there other people out there not so lucky. You can make a difference by going down to your local Red Cross or blood bank and stepping up for all three. It will help someone in my situation…possibly even save their life.
As far as my current condition goes, I am feeling great, waiting for my blood level to recuperate back to normal. Once that happens, they will test my bone marrow and see if I have gone into remission. In other words, they won’t test me until my counts go up, unlike the first time, where they tested me after 7 days post chemo. That is why this time is may take up to 3 weeks to determine if I have gone into remission.
Bottom line is we are happy with the news over the past couple of days even though I wasn’t able to match with Steve. We are very optimistic about the donor situation and we’re in wait and see mode for round 2 results, but we feel good about them as well. Thanks again for reading and for your support.
P.S. I’d like to throw out a special thank you to team chrome dome…Steve, Scott, Alex, Van, Jeff and a commitment from Kevin. Should be quite a scene when we all get out somewhere together. Thanks guys, brings a tear to my eye.
I know many of you have been asking about how you can donate bone marrow. The answer is you can and it is very easy. We spoke with the nurses here today and they said they are in bad need of blood, platelets and bone marrow. I have been lucky enough to always have it on hand when I need a transfusion or even now with the bone marrow, but there other people out there not so lucky. You can make a difference by going down to your local Red Cross or blood bank and stepping up for all three. It will help someone in my situation…possibly even save their life.
As far as my current condition goes, I am feeling great, waiting for my blood level to recuperate back to normal. Once that happens, they will test my bone marrow and see if I have gone into remission. In other words, they won’t test me until my counts go up, unlike the first time, where they tested me after 7 days post chemo. That is why this time is may take up to 3 weeks to determine if I have gone into remission.
Bottom line is we are happy with the news over the past couple of days even though I wasn’t able to match with Steve. We are very optimistic about the donor situation and we’re in wait and see mode for round 2 results, but we feel good about them as well. Thanks again for reading and for your support.
P.S. I’d like to throw out a special thank you to team chrome dome…Steve, Scott, Alex, Van, Jeff and a commitment from Kevin. Should be quite a scene when we all get out somewhere together. Thanks guys, brings a tear to my eye.
Sunday, July 20, 2008
Sunday, July 19th, 2008
Red Sox, Schmed Sox. Nice sweep Halos!
Just wanted to check in and let you all know that I am feeling much better since my last posting. That was luckily a short lived period of hell which ended on Saturday. To be honest with you it makes me feel good that the chemo hit me harder this time. It makes me believe that the chemo hit the cancer that much harder which is what needs to happen. I'd be happy to take the pain on my end if it means the same amount of pain is getting inflicted on the cancer. Bright side right?
So again, not a whole lot of news to report on. Should know about the big brother match in a few days so look lout for that. Other than that, had a very good weekend. Angels swept the Sox, visited with lots of friends and family and got my appetite back. All in all a great few days.
Thanks for reading guys and have a great Monday.
By the way, still laughing about your message Estey. That is one for the ages my friend...
Just wanted to check in and let you all know that I am feeling much better since my last posting. That was luckily a short lived period of hell which ended on Saturday. To be honest with you it makes me feel good that the chemo hit me harder this time. It makes me believe that the chemo hit the cancer that much harder which is what needs to happen. I'd be happy to take the pain on my end if it means the same amount of pain is getting inflicted on the cancer. Bright side right?
So again, not a whole lot of news to report on. Should know about the big brother match in a few days so look lout for that. Other than that, had a very good weekend. Angels swept the Sox, visited with lots of friends and family and got my appetite back. All in all a great few days.
Thanks for reading guys and have a great Monday.
By the way, still laughing about your message Estey. That is one for the ages my friend...
Saturday, July 19, 2008
Friday, July 18th, 2008
So I just got done reading the posting from last night and all I have to say is WOW. Very well done indeed. They say that laughter is key to a speedy recovery...I think I got my fair share for the day. If that were the case I'd be on my way home right now to give Floyd a big hug and a kiss, but unfortunately that ain't how it works so here I sit. Please keep the posting coming. It really is the only way I can stay connected to most of you, so don't be shy to say hi every now and then.
Back to business, which has been light lately. As I said there won’t be much news until next week when we finally get to hear if my big bro is a match. All fingers, toes, and everything else your minds could imagine are crossed on that one but if it isn't a match it's not the end of the world. What I learned today is that apparently the likelihood of me matching with someone unrelated is pretty high due to the fact that I'm a white male. I guess it's based on simple demographics so if I were born in let's say, Zimbabwe, I'd have a much more difficult time finding a donor. Anyway, this process is going to take some time regardless, so let's just hope big bro and I are all lined up. I'm feeling pretty good about it myself.
On the cancer side, I must say I've had a pretty rough couple of days. The chemo finally sank it's teeth into me and took me down for the count. I'll spare you the details but it's pretty safe to say that round 2 didn’t let me off that easy. Still not enough to dampen my spirits, but enough to put me through hell for about 36 hours. As of now I'm feeling great and looking at it in my rear view mirror. What I will take from that is the chemo is going to town hard on those bastard little cancer cells which is what I need, so with the bad comes the good.
I'd like to say a few special thank you's to the folks who have donated to the Pediatric Cancer Research Foundation. Doug Anderson, Aunt Cherrie, Lauren, Kevin and Eryn. Money well utilized so thank you.
That's it for today everyone. So I guess just keep on truckin'.
Back to business, which has been light lately. As I said there won’t be much news until next week when we finally get to hear if my big bro is a match. All fingers, toes, and everything else your minds could imagine are crossed on that one but if it isn't a match it's not the end of the world. What I learned today is that apparently the likelihood of me matching with someone unrelated is pretty high due to the fact that I'm a white male. I guess it's based on simple demographics so if I were born in let's say, Zimbabwe, I'd have a much more difficult time finding a donor. Anyway, this process is going to take some time regardless, so let's just hope big bro and I are all lined up. I'm feeling pretty good about it myself.
On the cancer side, I must say I've had a pretty rough couple of days. The chemo finally sank it's teeth into me and took me down for the count. I'll spare you the details but it's pretty safe to say that round 2 didn’t let me off that easy. Still not enough to dampen my spirits, but enough to put me through hell for about 36 hours. As of now I'm feeling great and looking at it in my rear view mirror. What I will take from that is the chemo is going to town hard on those bastard little cancer cells which is what I need, so with the bad comes the good.
I'd like to say a few special thank you's to the folks who have donated to the Pediatric Cancer Research Foundation. Doug Anderson, Aunt Cherrie, Lauren, Kevin and Eryn. Money well utilized so thank you.
That's it for today everyone. So I guess just keep on truckin'.
Wednesday, July 16, 2008
Wednesday, July 16th, 2008
Hi everyone, I wish I could tell you I have a bunch of news, but the fact of the matter is I don't, and probably won't for another week or so when we hear about the bone marrow match. Right now I am in a bit of a waiting period. For the next couple of weeks, the doctors are going to let the chemo work it's magic while also letting my blood cell counts gradually climb back up to acceptable levels. At the end of this 2 to 3 week waiting period, they will test my marrow again and see how much cancer is left. At that point we'll have a much clearer picture of next steps and potential future treatments.
I officially started my new exercise program today, which consisted of doing push ups and various dumb bell weight exercises for a total of 10 minutes. Thanks for bringing down the weights pops. It is pretty amazing how quickly you can lose strength and endurance when you're enclosed in a small room for a month. My only hope is that 10 minutes turns into 12 then 15, then 30, then who knows...I write a book about hospital fitness and make a million. Oh wait, I'm pretty sure that book already exists. Damn it, late again. Bottom line is it felt really good to actually feel my heart pumping blood again so I'll be looking forward to keeping that going. Besides, gives me something else to do to pass the time.
On a final note, congratulations to Eric and Lisa on the birth of their beautiful (I saw pictures) baby girl, Tatum "Tate" Marie Hunzeker today. I am so happy for you both.
That's it guys, that's all I got. Thanks for reading, writing and staying up on everything. We'll catch up tomorrow.
P.S. Get some sleep Mrs. O
I officially started my new exercise program today, which consisted of doing push ups and various dumb bell weight exercises for a total of 10 minutes. Thanks for bringing down the weights pops. It is pretty amazing how quickly you can lose strength and endurance when you're enclosed in a small room for a month. My only hope is that 10 minutes turns into 12 then 15, then 30, then who knows...I write a book about hospital fitness and make a million. Oh wait, I'm pretty sure that book already exists. Damn it, late again. Bottom line is it felt really good to actually feel my heart pumping blood again so I'll be looking forward to keeping that going. Besides, gives me something else to do to pass the time.
On a final note, congratulations to Eric and Lisa on the birth of their beautiful (I saw pictures) baby girl, Tatum "Tate" Marie Hunzeker today. I am so happy for you both.
That's it guys, that's all I got. Thanks for reading, writing and staying up on everything. We'll catch up tomorrow.
P.S. Get some sleep Mrs. O
Tuesday, July 15, 2008
Tuesday, July 15th, 2008
So go ahead and chalk up another round of chemo. Finished my last bag of round two on Monday night with again, minimal side effects. I got hit much harder this time by fatigue, but not much of anything else. I'll take having to nap a couple of times a day over the alternative any day. So again, I feel pretty fortunate to have made it through another barrage of chemo without having to deal with all of the negative effects that usually go along with it.
As you probably read from my last blog, my hair is completely gone...I'm bald... and it's a trip. There is no question I look like a mutant, but the benefits totally outweigh the negatives. Upkeep alone is reason enough to shave your head. No more bed head which has come in real handy with all of my fatigue. I just pop out of bed and I'm good to go. Throw some water on my face and I'm a new man. For those of you on the fence, I highly recommend it...that is if you can get past the fact that you look like a Martian. If I can get past that, so can you. In all seriousness, it still is a bit shocking when I see my bald noggin, but I am quickly getting used to it so it should be nothing in no time.
As far as tests and results go, we are still about a week away from finding out if my brother Steve is a bone marrow match. We are all waiting very patiently for that one. In the meantime, they already have everything they need from me, so they are going through the non-family donor database now looking for possible matches so they have options beyond Steve just in case we may need to go down that path.
I should get results in the next 2-3 weeks from the chemo round I just went through. They are going to wait a little bit longer on this one and let the chemo do it’s work. The end result here is to get into remission, so that is what we will be focusing on.
I am lucky enough to get to go through yet another spinal tap tomorrow. They want to take a look at the amount of pressure my spinal fluid could be putting on my spinal chord. I thought I was the lucky one to have two of these things done. Just imagine my surprise when they told me I get to have yet another. I tell you, there is nothing like having a 4 inch needle shoved into your spine…3 times. Wow, I really am lucky.
So that’s about it everyone, not much else to report on. Thanks for reading and writing. We'll catch up tomorrow.
As you probably read from my last blog, my hair is completely gone...I'm bald... and it's a trip. There is no question I look like a mutant, but the benefits totally outweigh the negatives. Upkeep alone is reason enough to shave your head. No more bed head which has come in real handy with all of my fatigue. I just pop out of bed and I'm good to go. Throw some water on my face and I'm a new man. For those of you on the fence, I highly recommend it...that is if you can get past the fact that you look like a Martian. If I can get past that, so can you. In all seriousness, it still is a bit shocking when I see my bald noggin, but I am quickly getting used to it so it should be nothing in no time.
As far as tests and results go, we are still about a week away from finding out if my brother Steve is a bone marrow match. We are all waiting very patiently for that one. In the meantime, they already have everything they need from me, so they are going through the non-family donor database now looking for possible matches so they have options beyond Steve just in case we may need to go down that path.
I should get results in the next 2-3 weeks from the chemo round I just went through. They are going to wait a little bit longer on this one and let the chemo do it’s work. The end result here is to get into remission, so that is what we will be focusing on.
I am lucky enough to get to go through yet another spinal tap tomorrow. They want to take a look at the amount of pressure my spinal fluid could be putting on my spinal chord. I thought I was the lucky one to have two of these things done. Just imagine my surprise when they told me I get to have yet another. I tell you, there is nothing like having a 4 inch needle shoved into your spine…3 times. Wow, I really am lucky.
So that’s about it everyone, not much else to report on. Thanks for reading and writing. We'll catch up tomorrow.
Sunday, July 13, 2008
Sunday, July 13th, 2008
Three words for tonight's message...Bald is Beautiful! Say hello to the latest member of the Kojak fan club.
That's it for the weekend everyone. Thanks again for all of your messages, we appreciate and enjoy reading every one of them, so please don't think they fall on blind eyes because they do not. Take care and good night...And good morning to our friends in Germany, Croatia and the Philippines. We'll see you soon.
That's it for the weekend everyone. Thanks again for all of your messages, we appreciate and enjoy reading every one of them, so please don't think they fall on blind eyes because they do not. Take care and good night...And good morning to our friends in Germany, Croatia and the Philippines. We'll see you soon.
Saturday, July 12th, 2008
Good evening everyone. So today is my third day of chemo in round number 2 and all is going well. I feel great and things are running smoothly. Aside from a little fatigue, I feel just as good as I did pre-chemo. This round of treatment will be over before I know it, just like the first round. Unfortunately, or fortunately, depends on the way you look at it I guess, that is about all I have to share. Things slow down over the weekend so you can expect the same amount of news tomorrow as you have read here today.
One thing I would like to do is use this opportunity to congratulate one of my best friends in the world, Jeff Harden on his marriage today to his beautiful new wife Julie. Not sure how you could have made this guy any better Julie, but today you did. Evey and I wish we were there to properly congratulate you both in person, but I know you could feel us there in spirit. Congratulations guys, we love you both!
Good night everyone and thanks for reading. Unless there is news coming in tomorrow, you'll hear back from us on Monday. Take care and be well.
One thing I would like to do is use this opportunity to congratulate one of my best friends in the world, Jeff Harden on his marriage today to his beautiful new wife Julie. Not sure how you could have made this guy any better Julie, but today you did. Evey and I wish we were there to properly congratulate you both in person, but I know you could feel us there in spirit. Congratulations guys, we love you both!
Good night everyone and thanks for reading. Unless there is news coming in tomorrow, you'll hear back from us on Monday. Take care and be well.
Friday, July 11, 2008
Friday, July 11th, 2008
Hi everyone, so not such good news to report on tonight if you're an Angel fan...I'll just leave it at that.
Not so much Leukemia news to report on tonight. It was a very quiet day as far as testing and results go which was actually quite nice. The good news is that we finally got to meet my doctor, Dr. Curtain today which went really well. What instantly struck me was the fact that he took the time to answer all of our questions until he was confident we had the answers we were looking for. He also spoke on our level which has been something difficult to come by with the high level doctors since we got here. These are the things we heard about this guy and that's why we chose him without even meeting him. It's good to see the right choice was made.
He did confirm that the form of cancer I am dealing with is aggressive so I will have a fight on my hands. I knew that going in so this is nothing new to me. I'm feeling really good about having Dr. Curtain in my corner, so today only made me feel better than I already do.
That it's for tonight everyone. Take care and thanks for reading, we'll catch up tomorrow.
Not so much Leukemia news to report on tonight. It was a very quiet day as far as testing and results go which was actually quite nice. The good news is that we finally got to meet my doctor, Dr. Curtain today which went really well. What instantly struck me was the fact that he took the time to answer all of our questions until he was confident we had the answers we were looking for. He also spoke on our level which has been something difficult to come by with the high level doctors since we got here. These are the things we heard about this guy and that's why we chose him without even meeting him. It's good to see the right choice was made.
He did confirm that the form of cancer I am dealing with is aggressive so I will have a fight on my hands. I knew that going in so this is nothing new to me. I'm feeling really good about having Dr. Curtain in my corner, so today only made me feel better than I already do.
That it's for tonight everyone. Take care and thanks for reading, we'll catch up tomorrow.
Thursday, July 10, 2008
Thursday, July 10th, 2008
Hi everyone. Wow, what an Angel game for those of you who saw it. I’m starting to wonder if watching those is good for my health.
So I had a conversation today with the guy who runs the research department here for the entire Leukemia center. He actually signed off on my doctor's PHD so he know's his stuff for sure. Anyway, I asked him for a frank assessment of the results I got last night. He said it would just about be statistically impossible for me to get through all of this without having to go through two rounds of chemo. That certainly put my mind at ease a bit and should do the same for you.
Other news today was the results from the spinal tap. Results came back negative which means they showed no sign of cancer in my spinal fluid. They also ran tests to see if there was any cancer cells in my blood which also turned up negative. The doctors were very happy about those results which means we too were happy. It is a really good sign the chemo has been actively going after the cancer. It didn't quite hit the bone marrow as hard as we wanted, but it was good to hear today that that is the norm rather than the exception. With that said, there is still a chance round 2 won't even get the bone marrow cancer cells down to acceptable levels, only time and results will tell.
I'd like to throw out a special thank you to Kelly Dyer and Bill McGowen for donating to the Childrens Pediatric Cancer Society in my name. Any donation amount will do and I assure you it is going to a good cause. I certainly appreciate it, but more importantly, the kids it is helping appreciate it much more. For more information, please refer to the link on this site.
So the roller coaster ride continues and all we can do is go with it and hold on tight. Day 2 of chemo is going very well and I'm sure it will be over before I know it. That's it for tonight. Thanks for reading and hopefully we'll have more news for you tomorrow.
So I had a conversation today with the guy who runs the research department here for the entire Leukemia center. He actually signed off on my doctor's PHD so he know's his stuff for sure. Anyway, I asked him for a frank assessment of the results I got last night. He said it would just about be statistically impossible for me to get through all of this without having to go through two rounds of chemo. That certainly put my mind at ease a bit and should do the same for you.
Other news today was the results from the spinal tap. Results came back negative which means they showed no sign of cancer in my spinal fluid. They also ran tests to see if there was any cancer cells in my blood which also turned up negative. The doctors were very happy about those results which means we too were happy. It is a really good sign the chemo has been actively going after the cancer. It didn't quite hit the bone marrow as hard as we wanted, but it was good to hear today that that is the norm rather than the exception. With that said, there is still a chance round 2 won't even get the bone marrow cancer cells down to acceptable levels, only time and results will tell.
I'd like to throw out a special thank you to Kelly Dyer and Bill McGowen for donating to the Childrens Pediatric Cancer Society in my name. Any donation amount will do and I assure you it is going to a good cause. I certainly appreciate it, but more importantly, the kids it is helping appreciate it much more. For more information, please refer to the link on this site.
So the roller coaster ride continues and all we can do is go with it and hold on tight. Day 2 of chemo is going very well and I'm sure it will be over before I know it. That's it for tonight. Thanks for reading and hopefully we'll have more news for you tomorrow.
Wednesday, July 9, 2008
Wednesday, July 9, 2008
Hi everyone, the spinal tap didn't happen last night so they actually got it done this afternoon. Evey was lucky enough to walk in the room just as the needle was going into my spine...lucky her huh? I asked her to take a quick photo but she wanted nothing to do with it. Again, the purpose of the spinal tap is to see if there is any sign of infection, bacteria, or cancer in my spine. Just by eyeballing the fluid, the doctor said it looked good in terms of infection since the fluid was clear and not cloudy. We should hopefully have definitive results by Friday or Saturday.
We did get results from the bone marrow test that was done on Tuesday. Unfortunately, I will have to go through another round of chemo to bring the cancer cells down to a level that makes the doctors comfortable. It appears the cancer is a lot more aggressive than they originally suspected. With that said, round two was kicked off this evening. The treatment is called "5 + 2" which consists of the same medication as the first round, only this one is 5 days instead of the original 7.
Obviously not the news we would have liked to report on, but it is not realistic to think I am going to skate through this without a scratch. We can consider this scratch number 1 with more to come. I'm still feeling great and know things could be a hell of a lot worse so as far as I'm concerned, this hasn't changed a thing aside from what will be pumping through my body for the next 5 days.
Thanks for reading everyone and take care.
We did get results from the bone marrow test that was done on Tuesday. Unfortunately, I will have to go through another round of chemo to bring the cancer cells down to a level that makes the doctors comfortable. It appears the cancer is a lot more aggressive than they originally suspected. With that said, round two was kicked off this evening. The treatment is called "5 + 2" which consists of the same medication as the first round, only this one is 5 days instead of the original 7.
Obviously not the news we would have liked to report on, but it is not realistic to think I am going to skate through this without a scratch. We can consider this scratch number 1 with more to come. I'm still feeling great and know things could be a hell of a lot worse so as far as I'm concerned, this hasn't changed a thing aside from what will be pumping through my body for the next 5 days.
Thanks for reading everyone and take care.
Tuesday, July 8, 2008
Tuesday, July 8th, 2008
Sorry we didn’t post anything yesterday but there was nothing new to report on so we figured why waste your time. Today was a different story as we got a lot done. As I sit here waiting for them to come in and do a second spinal tap, I figured this is as good a time as any to get you all updated.
My brother Steve came down this morning so we took advantage of the fact that he was here to test for a bone marrow match. Everything went well and the test was done. We unfortunately will not know the results of that test for a couple of weeks, but it certainly feels good to have it done. Apparently there at 10 elements that need to match in order for them to call it a perfect match. Our fingers are crossed that it is in fact a perfect match, but if it turns out it’s not, we should have other options ready to go by then. While we wait for the results of Steve's test, they will already be looking for other perfect matches in their database of donors.
I also underwent my third bone marrow extraction today which was just as fun and exciting as the first two. My Mom got to witness this one so that was a nice thing to share with her…ha. This is the test that will tell us how effective the chemo was against the cancer cells during the first round of treatment. The results of this test could be back as soon as tomorrow or possibly Thursday. If things go very well and there is little to no cancer left in my marrow, they will let my body recover and wait for the transplant. If there is still more cancer than the doctors are comfortable with, they will put me through another round of chemo which will last probably 5 days. The good news is that I can expect the same side effects for all future chemo treatments as I experienced during the induction round, which was pretty much none.
As far as the spinal tap this evening goes, the purpose is so they can check and make sure there are no cancer cells in my spinal fluid, which is really an extension of the bone marrow test I went through today. It basically covers things from all angles. Results from this test should be back tomorrow or Thursday as well.
So as you can see, it has been a busy day which isn’t over yet, and not only for me but for my brother as well. I’m feeling good about the results, but anything could happen with the results. Bottom line is whatever we need to do we’ll do, and we’ll do it at 110%.
Thanks for reading everyone and results to follow soon. Take care!
My brother Steve came down this morning so we took advantage of the fact that he was here to test for a bone marrow match. Everything went well and the test was done. We unfortunately will not know the results of that test for a couple of weeks, but it certainly feels good to have it done. Apparently there at 10 elements that need to match in order for them to call it a perfect match. Our fingers are crossed that it is in fact a perfect match, but if it turns out it’s not, we should have other options ready to go by then. While we wait for the results of Steve's test, they will already be looking for other perfect matches in their database of donors.
I also underwent my third bone marrow extraction today which was just as fun and exciting as the first two. My Mom got to witness this one so that was a nice thing to share with her…ha. This is the test that will tell us how effective the chemo was against the cancer cells during the first round of treatment. The results of this test could be back as soon as tomorrow or possibly Thursday. If things go very well and there is little to no cancer left in my marrow, they will let my body recover and wait for the transplant. If there is still more cancer than the doctors are comfortable with, they will put me through another round of chemo which will last probably 5 days. The good news is that I can expect the same side effects for all future chemo treatments as I experienced during the induction round, which was pretty much none.
As far as the spinal tap this evening goes, the purpose is so they can check and make sure there are no cancer cells in my spinal fluid, which is really an extension of the bone marrow test I went through today. It basically covers things from all angles. Results from this test should be back tomorrow or Thursday as well.
So as you can see, it has been a busy day which isn’t over yet, and not only for me but for my brother as well. I’m feeling good about the results, but anything could happen with the results. Bottom line is whatever we need to do we’ll do, and we’ll do it at 110%.
Thanks for reading everyone and results to follow soon. Take care!
Sunday, July 6, 2008
Sunday, July 6th, 2008
Happy Sunday everyone and I hope you all had a great long weekend. All things considered, mine wasn't too bad. Certainly not my ideal 4th of July weekend, but I was still able to see good friends and family, eat a burger and watch a ton of sports. I even had probably the best cupcake of my life. As I said, not too shabby all things considered.
We had another good visit from the doctor this morning. She said that everything continues to look absolutely perfect with the way my body has responded to the first round of chemo. My white blood cell counts are rebounding extremely quickly, liver looks great, side effects are minimal if any and early indications look like the chemo really took it to the cancer cells hard. The bone marrow test will tell us definitively how well the chemo did against the cancer, but she says she has a really good feeling about it so I'm going to go with that until I hear otherwise.
Not much else to report on for now. The big news for the week will be the results of the bone marrow test for me and transplant match test for my brother Steve. We'll get those results posted as soon as we get them which should be closer to the end of the week. Thanks for reading and take care.
We had another good visit from the doctor this morning. She said that everything continues to look absolutely perfect with the way my body has responded to the first round of chemo. My white blood cell counts are rebounding extremely quickly, liver looks great, side effects are minimal if any and early indications look like the chemo really took it to the cancer cells hard. The bone marrow test will tell us definitively how well the chemo did against the cancer, but she says she has a really good feeling about it so I'm going to go with that until I hear otherwise.
Not much else to report on for now. The big news for the week will be the results of the bone marrow test for me and transplant match test for my brother Steve. We'll get those results posted as soon as we get them which should be closer to the end of the week. Thanks for reading and take care.
Saturday, July 5, 2008
Saturday, July 5th, 2008
So how are those 4th of July hangovers treating you? I think it is pretty safe to say that this is the first clear headed July 5th I have had in close to two decades. So with that said, I felt really good today and it looks like I have officially squeaked by round one of chemo with little to no side effects. I'm feeling pretty good about that.
As far as next steps go, Steve will be going through some testing early next week to see if he is a match for a bone marrow transplant. We should hopefully know by the end of the week if we have a match or not. In addition to that, I will be going through my own bone marrow testing to see just how much damage that first round of chemo did to the cancer cells currently polluting my body. Based on some early signs, things are looking like it was pretty effective, but we won't know until the test results come back, just how effective it was. From there we'll have a much better picture of what future treatment looks like.
So there you have it, two really big tests to get through next week. You will know shortly after us how things turned out. Take care everyone and thanks for reading.
As far as next steps go, Steve will be going through some testing early next week to see if he is a match for a bone marrow transplant. We should hopefully know by the end of the week if we have a match or not. In addition to that, I will be going through my own bone marrow testing to see just how much damage that first round of chemo did to the cancer cells currently polluting my body. Based on some early signs, things are looking like it was pretty effective, but we won't know until the test results come back, just how effective it was. From there we'll have a much better picture of what future treatment looks like.
So there you have it, two really big tests to get through next week. You will know shortly after us how things turned out. Take care everyone and thanks for reading.
Friday, July 4th, 2008
New York medium rare please...
All is quiet on the hospital front. Not much to report on today except that we hope you all have a happy and safe 4th of July. Trust me, we wish we could be right there with you grilling steaks and drinking beers, but that isn't going to happen so you'll have to have enough fun for the both of us.
It is going to be very quiet this weekend given the holiday and my kind of "in between" status, but if any news should come up we will be sure to post it. Otherwise, have a great long weekend and go Angels!
All is quiet on the hospital front. Not much to report on today except that we hope you all have a happy and safe 4th of July. Trust me, we wish we could be right there with you grilling steaks and drinking beers, but that isn't going to happen so you'll have to have enough fun for the both of us.
It is going to be very quiet this weekend given the holiday and my kind of "in between" status, but if any news should come up we will be sure to post it. Otherwise, have a great long weekend and go Angels!
Thursday, July 3, 2008
Thursday, July 3, 2008
Today was another good day as far as feeling well is concerned. Right now we are in waiting mode until next Thursday when they will do another bone marrow test. Until then, there is not going to be a lot of new developments aside from trying to test Steve for a match and finding a match if Steve is not.
Given that there is really not a whole lot to report on, I want to take this opportunity to once again thank everybody for the cards, gifts, cookies, DVDs, magazines, thoughts, and prayers. Everyone of you in your own way is helping us get through this and it is important to us that you know we appreciate it and thank you very much for it.
We will continue to keep you updated but as I said, there won't be much news until we get the bone marrow testing back. Please continue to post your comments and thoughts...
Happy 4th of July to all! We will be here with our fake fireworks compliments of the Cave's!
Given that there is really not a whole lot to report on, I want to take this opportunity to once again thank everybody for the cards, gifts, cookies, DVDs, magazines, thoughts, and prayers. Everyone of you in your own way is helping us get through this and it is important to us that you know we appreciate it and thank you very much for it.
We will continue to keep you updated but as I said, there won't be much news until we get the bone marrow testing back. Please continue to post your comments and thoughts...
Happy 4th of July to all! We will be here with our fake fireworks compliments of the Cave's!
Wednesday, July 2, 2008
Wednesday, July 2nd, 2008
Today is cause for celebration considering the fact hat I have finished the chemo portion of the induction phase. I seriously can't believe how quickly the whole thing went by. I still have my hair and no other side effects have taken hold yet so I may just get through this thing unscathed... time will tell. I'm still feeling great, fatigue is all but gone and the small amount of nausea I had a couple of days ago has seemed to subside...so I guess you could say all is well.
In 7 days they will do another bone marrow test to see what effect the chemo had on the cancer cells. If things look good and the cancer cells look low enough, then they will allow my body to rest and recover while I wait for the bone marrow transplant. If there is still an unacceptable amount of cancer cells in my marrow, then they will put me through another, shorter round of chemo. This will be done until my marrow is clean enough of cancer cells to move forward with the transplant, which is still in the process of approvals, matches, etc.
At this point, my biggest struggle is trying to find ways to get my heart pumping at least to a point where I don't feel like a bump on a log. Going from exercising 5-6 days a week down to nothing overnight has taken a toll on me both mentally and physically. Unfortunately while I am going through the induction stage, there isn't a whole lot I can do. The bright side is I can walk 25 laps around the nurses station which equals a mile, so I have that going for me, which is nice. Can you say hamster on a wheel?
That's about it for tonight. Thanks for reading and we'll catch up tomorrow.
In 7 days they will do another bone marrow test to see what effect the chemo had on the cancer cells. If things look good and the cancer cells look low enough, then they will allow my body to rest and recover while I wait for the bone marrow transplant. If there is still an unacceptable amount of cancer cells in my marrow, then they will put me through another, shorter round of chemo. This will be done until my marrow is clean enough of cancer cells to move forward with the transplant, which is still in the process of approvals, matches, etc.
At this point, my biggest struggle is trying to find ways to get my heart pumping at least to a point where I don't feel like a bump on a log. Going from exercising 5-6 days a week down to nothing overnight has taken a toll on me both mentally and physically. Unfortunately while I am going through the induction stage, there isn't a whole lot I can do. The bright side is I can walk 25 laps around the nurses station which equals a mile, so I have that going for me, which is nice. Can you say hamster on a wheel?
That's about it for tonight. Thanks for reading and we'll catch up tomorrow.
Tuesday, July 1, 2008
Tuesday, July 1, 2008
Today started day 7 of chemo which means the first round of chemo ends tomorrow night. We will be doing a bone marrow test in about a week to see how the cancer is reacting to the chemo. After this round of chemo there is a 2-3 week recovery period. Although this round of chemo is over, I am still unknown as to how my body is going to react to it all. Thanks to all for the tips on chemo and getting the popsicles. I had heard that and did take that advice. Keep it coming!
We finally got the results back from the Cytogenetics test which came back as intermediate risk meaning I am a good candidate for the bone marrow transplant. This is the news we have been waiting for so it was nice to get it. Now we need to wait for the insurance company to approve the testing for Steve and hope he is a match (which will take time).
Today I wasn't feeling as tired as yesterday which is good. I did have nauseau in the morning but outside of that I still feel as strong as I did before this all began. Thanks for reading and I look forward to another day of becoming closer to recovery...
We finally got the results back from the Cytogenetics test which came back as intermediate risk meaning I am a good candidate for the bone marrow transplant. This is the news we have been waiting for so it was nice to get it. Now we need to wait for the insurance company to approve the testing for Steve and hope he is a match (which will take time).
Today I wasn't feeling as tired as yesterday which is good. I did have nauseau in the morning but outside of that I still feel as strong as I did before this all began. Thanks for reading and I look forward to another day of becoming closer to recovery...
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