Friday, May 13, 2011
Kurt's Celebration of Life - May 18, 2011 Re-Post
Sorry all, Blogspot.com had a technical problem, so we had to re-post the information below. No changes from before.
Tuesday, May 10, 2011
May 10, 2011
Kurt Martin Thallmayer, 38, passed away peacefully today following a long battle with Leukemia. He was the beloved husband of Evey Thallmayer, brother Steve Thallmayer, and loving son of Erich Thallmayer and Andree Van Rensburg. He is survived by a loving family of Aunts, Uncles, Cousins, and a large group of friends that loved him very much. His lasting tribute will be all the lives he touched and all the friends who considered him family, all of whom will never forget his wit, his generosity, and his courage.
In lieu of flowers, memorials may be made in Kurt's name to The Leukemia and Lymphoma Society at www.lls.org.
Thank you all for standing by Kurt's side, every step of his battle and throughout the incredible life that he led.
Details for Kurt's Celebration of Life will be posted here in the next few days.
In lieu of flowers, memorials may be made in Kurt's name to The Leukemia and Lymphoma Society at www.lls.org.
Thank you all for standing by Kurt's side, every step of his battle and throughout the incredible life that he led.
Details for Kurt's Celebration of Life will be posted here in the next few days.
Saturday, April 30, 2011
4/30/11- Update
Hello Friends and Family- We just wanted to send an update on how things are at the moment with Kurt. This has been an incredibly difficult week for us. Kurt is currently being cared for in the ICU because his condition has not been good. Every day has slight changes forward and backward. Please continue to keep Kurt in your thoughts and prayers. It is greatly appreciated.
Additionally, because Kurt has so many great friends and family and is so well loved we've had an overwhelming amount of visitors. Due to the fact he is in an Intensive Care Unit the hospital needs to limit the allowed visitors to be family only. We really appreciate those that have already dropped by to visit, texted, emailed etc. because it really means a lot, but going forward we won't be able to have guests outside of family. We'd still love to hear from you via the blog and will continue to update you as we have more to share.
Love,
Evey (and Floyd)
Additionally, because Kurt has so many great friends and family and is so well loved we've had an overwhelming amount of visitors. Due to the fact he is in an Intensive Care Unit the hospital needs to limit the allowed visitors to be family only. We really appreciate those that have already dropped by to visit, texted, emailed etc. because it really means a lot, but going forward we won't be able to have guests outside of family. We'd still love to hear from you via the blog and will continue to update you as we have more to share.
Love,
Evey (and Floyd)
Monday, April 25, 2011
Please keep Kurt in your thoughts and prayers
Hi Everyone-
Kurt is in the ICU battling a severe infection in his lungs (pneumonia). We are in a wait and see phase at this point. He is very ill and could use all the positive thoughts and prayers that you can give to him at this time.
Thank you all for hanging with him. You are the reason he keeps fighting this battle.
Love,
Evey (and Floyd)
Kurt is in the ICU battling a severe infection in his lungs (pneumonia). We are in a wait and see phase at this point. He is very ill and could use all the positive thoughts and prayers that you can give to him at this time.
Thank you all for hanging with him. You are the reason he keeps fighting this battle.
Love,
Evey (and Floyd)
Friday, March 11, 2011
Day + 79 (March 11th, 2011)
Hi everyone,
well, that Friday came and went and and still I sat in the hospital. It wasn't until the middle of the next week that my prayers were answered and I was send packing. That was by far the most painful and frustrating stint I have ever had in the hospital. The walls seemed like they were closing in on me every day. I just couldn't deal with it for some reason. Regardless, that's all over now and I'm home.
it hasn't been that most enjoyable trip home though. From the first day I left I have been battling with some pretty brutal stomach nausea. One of the good things about being in the hospital is they can pump you with IV drugs to hide all of that stuff. At home you have to use meds which seldom really work so you are basically stuck dealing with it. I've tried them all too, and they seem to work sporadically. And when I say sporadically, I mean sporadically. Having this nausea really ruins just about everything. I don't want to talk to anyone, I don't feel like going out, I quite honestly don't feel like doing anything. I just want to lay on the couch and watch tv. That way I can unplug from the rest of the world and deal with the nausea. Trust me, it's a crappy exhistence and it drives my crazy, but it's the way it is right now.
My weight is way down aound the 145 level and I can't seeem to get it to go up. I am eating three solid meals a day and for some reason it doesn't make a blip on the scales. I'm at least happy I have my appetite, but again, the stomach nausea affects that to the point when I'm really only eating partial meals, but that should still get me out of the 145 range.
Outside of that I am spending about 2-3 days per week n San Diego either meeting with doctors, getting some sort of test performed on me, or getting a supplement of some sort...Magnesium, Potassium, etc...
There are a lot of complaints here and there should be, life isn't all that great right now with these stomach pains, but in the grand scheme of things, I'm doing alright. I'm back home with my family, I'm breathing and walking and waking up every day so with all that said I'm doing alright. My goal now is to try to figure out what is going on with my stomach and fix it. We have run some pretty crazy tests in te few weeks to try to figure out what's going on and they all come back saying things look good. I guess thats a good thing but on some level I'd like to find something so we can address it.
Take care everyone and thank you for reading. One of the things that suffers as a result of this stomach pain I'm having, is updating this site. I'm serious when I say I really don't want to do anything, I'll try to be better at that because I do feel good once I do write. I hope you are all doing well and and I appreciate your support.
well, that Friday came and went and and still I sat in the hospital. It wasn't until the middle of the next week that my prayers were answered and I was send packing. That was by far the most painful and frustrating stint I have ever had in the hospital. The walls seemed like they were closing in on me every day. I just couldn't deal with it for some reason. Regardless, that's all over now and I'm home.
it hasn't been that most enjoyable trip home though. From the first day I left I have been battling with some pretty brutal stomach nausea. One of the good things about being in the hospital is they can pump you with IV drugs to hide all of that stuff. At home you have to use meds which seldom really work so you are basically stuck dealing with it. I've tried them all too, and they seem to work sporadically. And when I say sporadically, I mean sporadically. Having this nausea really ruins just about everything. I don't want to talk to anyone, I don't feel like going out, I quite honestly don't feel like doing anything. I just want to lay on the couch and watch tv. That way I can unplug from the rest of the world and deal with the nausea. Trust me, it's a crappy exhistence and it drives my crazy, but it's the way it is right now.
My weight is way down aound the 145 level and I can't seeem to get it to go up. I am eating three solid meals a day and for some reason it doesn't make a blip on the scales. I'm at least happy I have my appetite, but again, the stomach nausea affects that to the point when I'm really only eating partial meals, but that should still get me out of the 145 range.
Outside of that I am spending about 2-3 days per week n San Diego either meeting with doctors, getting some sort of test performed on me, or getting a supplement of some sort...Magnesium, Potassium, etc...
There are a lot of complaints here and there should be, life isn't all that great right now with these stomach pains, but in the grand scheme of things, I'm doing alright. I'm back home with my family, I'm breathing and walking and waking up every day so with all that said I'm doing alright. My goal now is to try to figure out what is going on with my stomach and fix it. We have run some pretty crazy tests in te few weeks to try to figure out what's going on and they all come back saying things look good. I guess thats a good thing but on some level I'd like to find something so we can address it.
Take care everyone and thank you for reading. One of the things that suffers as a result of this stomach pain I'm having, is updating this site. I'm serious when I say I really don't want to do anything, I'll try to be better at that because I do feel good once I do write. I hope you are all doing well and and I appreciate your support.
Tuesday, February 1, 2011
Day + 40 (February 1, 2011)
Hi everyone, day 40 is upon us and and still we sitin the hospital. Word around the campfire is that we may get to head home around Friday sometime. That would be a Friday from heaven so we'll just have to wait and see.
As far as tests go, we're pretty much through them all. I had my broncial test a few weeks ago which which was not fun. There were indications that there was fluid and blood forming around my lung and heart that they wanted to test. So far, nothing has grown yet so they are thinking it may be a fungal infection. I am on Ambizone and have been for quite some time to help with the infection so we are just waiting to see if I get worse. I have had many CT scans, chest x rays, sonograms, chardiograms, EKG's, etc to make sure they doctors are not missing anything. Once we get the results from all these tests, I am hoping to get cleared to go home.
That's it for now. I just hope I get home in time for Superbowl Sunday where I can watch the game from our living room...
As far as tests go, we're pretty much through them all. I had my broncial test a few weeks ago which which was not fun. There were indications that there was fluid and blood forming around my lung and heart that they wanted to test. So far, nothing has grown yet so they are thinking it may be a fungal infection. I am on Ambizone and have been for quite some time to help with the infection so we are just waiting to see if I get worse. I have had many CT scans, chest x rays, sonograms, chardiograms, EKG's, etc to make sure they doctors are not missing anything. Once we get the results from all these tests, I am hoping to get cleared to go home.
That's it for now. I just hope I get home in time for Superbowl Sunday where I can watch the game from our living room...
Wednesday, January 26, 2011
Day + 34 (Jan 26, 2011)
Hi Everyone-
Kurt's pain in his shoulder and abdomen returned along with more nausea. They did a scan and found a massive amount of fluid around his heart. They immediately did surgery and put a tube through his ribs near his heart to drain the liquid. The doctors kept the tube in so it could continue to drain and removed it yesterday. He was moved to 2 East (our home since November 8th was 3 West) where nurses can consistently monitor his heart.
We still have not received "official" information regarding his bone marrow biopsy from Friday. We are staying positive with the "no news is good news" approach as of today. We hope to get full results tomorrow.
The doctors found liquid surrounding his lungs so there will be a bronchoscopy tomorrow morning at 9am to remove some of the liquid and place it under a microscope to see what it is and decide how to treat it.
Kurt is recovering from his surgery and will be in the next few days. Please continue to keep him in your thoughts and prayers for a speedy recovery.
-Evey
Kurt's pain in his shoulder and abdomen returned along with more nausea. They did a scan and found a massive amount of fluid around his heart. They immediately did surgery and put a tube through his ribs near his heart to drain the liquid. The doctors kept the tube in so it could continue to drain and removed it yesterday. He was moved to 2 East (our home since November 8th was 3 West) where nurses can consistently monitor his heart.
We still have not received "official" information regarding his bone marrow biopsy from Friday. We are staying positive with the "no news is good news" approach as of today. We hope to get full results tomorrow.
The doctors found liquid surrounding his lungs so there will be a bronchoscopy tomorrow morning at 9am to remove some of the liquid and place it under a microscope to see what it is and decide how to treat it.
Kurt is recovering from his surgery and will be in the next few days. Please continue to keep him in your thoughts and prayers for a speedy recovery.
-Evey
Tuesday, January 18, 2011
Day + 26 (Jan18, 2011)
Hi Everyone,
I hope you are all doing well since my last message. Things have certainly taken a turn for the better on our end here. I'll start with the VOD issue I was dealing with which reqiured that new medication Defribrotide. And before I get started, I'd like to clarify one thing. In reading some of your comments, it sounded like Evey and I were coming out to all of you asking to help fund that drug. I thank you all for mentioning it but that was not our intention. We simply wrote that to let you all know what we have to deal with with some of theses things that crop up.
Anyway, the great news is we got the funding for the drug about a day after it we requested so we had someone in our corner on that one. As a result, we were able to start attacking the VOD immediately and I sit here today with the same readings and results as a normal person without VOD. We are going to continue through the end of the medication cycle (21 days) so we can continue to track results, but the stuff was approved and has already done what it was supposed to do. Very nice!
During that time, my white cell counts have come through in a big way. They showed up about 7 days ago and have been going crazy trying to attack all the infections in my body. They have gone frome 1,300 which is what they showed up as, and have fluctuated between that number and 18,000 ever since. They have even started to help in the fight with my Colitis. A normal white blood count is 2,500 so to see mine at 18,000 means my body was pretty infected and in bad shape.
I have also picked up some random pains here and there in the past couple of weeks. The first one was in my abdomen. It was so bad I could barely move around in bed let alone get in and out of it. They took some cat-scans and x-rays and determined that there is still a bunch "stuff" going on in that part of my colon. They told me that my white cells have now taken to the fight as well as the anti-biotics and really shouldn't be a problem aside from dealing with the pain. As of now the pain is gone and all is good. Then this tweaked nerve thing popped up and started sending out streaking pains all throughout my back. They could tell me nothing about it so thats why I call it a "tweaked nerve thing". Anyway, that lasted for about 3 nights and eventually went away on it's own.
So, with all of that said, the VOD is on it's way out, the Colitis is getting better as I type, random pains have been erradicated and my white cell counts have recovered. Those are all really good things which are leading me down a path which I never thought possible...going home. Yep, with all of this said, I'll be heading home in a couple of weeks (if all still is going well). I still have a bone marrow biopsy to get through which will be later this week, but those are the facts as of this evening and coming home soon is my only goal as of now. I can't wait to lay in bed with my wife, my dog and my DVR. I know, sounds lame, but trust me, those are the only things I want, and I want them now!!! Take care everyone and be well. Evey, Floyd and I send our love and can't thank you enough for your love and support.
Andrew, send me your email address. kurt.thallmayer@ingrammicro.com
I hope you are all doing well since my last message. Things have certainly taken a turn for the better on our end here. I'll start with the VOD issue I was dealing with which reqiured that new medication Defribrotide. And before I get started, I'd like to clarify one thing. In reading some of your comments, it sounded like Evey and I were coming out to all of you asking to help fund that drug. I thank you all for mentioning it but that was not our intention. We simply wrote that to let you all know what we have to deal with with some of theses things that crop up.
Anyway, the great news is we got the funding for the drug about a day after it we requested so we had someone in our corner on that one. As a result, we were able to start attacking the VOD immediately and I sit here today with the same readings and results as a normal person without VOD. We are going to continue through the end of the medication cycle (21 days) so we can continue to track results, but the stuff was approved and has already done what it was supposed to do. Very nice!
During that time, my white cell counts have come through in a big way. They showed up about 7 days ago and have been going crazy trying to attack all the infections in my body. They have gone frome 1,300 which is what they showed up as, and have fluctuated between that number and 18,000 ever since. They have even started to help in the fight with my Colitis. A normal white blood count is 2,500 so to see mine at 18,000 means my body was pretty infected and in bad shape.
I have also picked up some random pains here and there in the past couple of weeks. The first one was in my abdomen. It was so bad I could barely move around in bed let alone get in and out of it. They took some cat-scans and x-rays and determined that there is still a bunch "stuff" going on in that part of my colon. They told me that my white cells have now taken to the fight as well as the anti-biotics and really shouldn't be a problem aside from dealing with the pain. As of now the pain is gone and all is good. Then this tweaked nerve thing popped up and started sending out streaking pains all throughout my back. They could tell me nothing about it so thats why I call it a "tweaked nerve thing". Anyway, that lasted for about 3 nights and eventually went away on it's own.
So, with all of that said, the VOD is on it's way out, the Colitis is getting better as I type, random pains have been erradicated and my white cell counts have recovered. Those are all really good things which are leading me down a path which I never thought possible...going home. Yep, with all of this said, I'll be heading home in a couple of weeks (if all still is going well). I still have a bone marrow biopsy to get through which will be later this week, but those are the facts as of this evening and coming home soon is my only goal as of now. I can't wait to lay in bed with my wife, my dog and my DVR. I know, sounds lame, but trust me, those are the only things I want, and I want them now!!! Take care everyone and be well. Evey, Floyd and I send our love and can't thank you enough for your love and support.
Andrew, send me your email address. kurt.thallmayer@ingrammicro.com
Wednesday, January 5, 2011
Day + 13
Hi Everybody. This is Day + 13 since it's the 13th day passed the transplant or 13 days passed my new birthday as they call it. We are barely through my P.R.E.S incident and we are onto our next issue. I haven't been feeling that well and have been retaining liquid which makes my entire body swell up, especially my arms and ankles. After many tests, I have been told I have Hepatic Veno-Occlusive Disease (VOD). This is a result of complications of my bone marrow transplant or the high dose chemotherapy I had to get. VOD is characterized by damage to blood vessels in the liver and surrounding liver cells, leading to pain, fluid retention, and abnormal liver function. You can read more about it if you want by googling it.
There is no cure for VOD so I have been asked to particpate in a clinical trial to test a new drug called Defibrotide that is not yet FDA approved. Evey and I signed the papers today and we are waiting to see if my insurance will cover it. The cost of the drug is over $40k. We will know late today or tomorrow if my insurance will help with the funding.
Other than that, I have been not feeling too well lately. The symptoms for the VOD is a constant battle going on in my abdomen which has caused me non-stop pain for the past 12 days. Sleeping is an absolute hassle and I am seriously in constant pain dealing with this so the quicker we can move past that the better off we'll all be. I haven't eaten in over 3 weeks. The doctors are trying to keep me hydrated through my IV and Evey has been trying to get me to have some broth, jello, popsicles, ice cream, ensure, etc but nothing helps or works. Nothing sounds good to eat and my throat and lungs hurt. The doctors think I have mouth sores which is causing a lot of pain when I swallow, from my stomach all the way up to my throat. Quite honestly the whole thing just sucks and and I mentioned before, we both want to move past it as soon as possible. Neither of us are getting any sleep and and we both seem like we're on the verge of going nuts.
On another note, I am looking forward to a long awaited trip from Floyd this week where he may be making an appearance when a group of friends show up tomorrow night. We'll have to wait and see how that rumor turns out. I've heard these things before and had them go south so I really don't want to get my hopes up.
Well that's about all I have for now. As I said we have a pretty good sized group showing up tomorrow as well as my bro and Dad tonight. Take care everyone and be well.
Love Kurt, Evey and Floyd.
There is no cure for VOD so I have been asked to particpate in a clinical trial to test a new drug called Defibrotide that is not yet FDA approved. Evey and I signed the papers today and we are waiting to see if my insurance will cover it. The cost of the drug is over $40k. We will know late today or tomorrow if my insurance will help with the funding.
Other than that, I have been not feeling too well lately. The symptoms for the VOD is a constant battle going on in my abdomen which has caused me non-stop pain for the past 12 days. Sleeping is an absolute hassle and I am seriously in constant pain dealing with this so the quicker we can move past that the better off we'll all be. I haven't eaten in over 3 weeks. The doctors are trying to keep me hydrated through my IV and Evey has been trying to get me to have some broth, jello, popsicles, ice cream, ensure, etc but nothing helps or works. Nothing sounds good to eat and my throat and lungs hurt. The doctors think I have mouth sores which is causing a lot of pain when I swallow, from my stomach all the way up to my throat. Quite honestly the whole thing just sucks and and I mentioned before, we both want to move past it as soon as possible. Neither of us are getting any sleep and and we both seem like we're on the verge of going nuts.
On another note, I am looking forward to a long awaited trip from Floyd this week where he may be making an appearance when a group of friends show up tomorrow night. We'll have to wait and see how that rumor turns out. I've heard these things before and had them go south so I really don't want to get my hopes up.
Well that's about all I have for now. As I said we have a pretty good sized group showing up tomorrow as well as my bro and Dad tonight. Take care everyone and be well.
Love Kurt, Evey and Floyd.
Monday, December 27, 2010
December 27th, 2010
Hi everyone,
long time no talk, but that is my fault. I've been in a medical induced coma for the last 5 days or so, and finally came out of it on Christmas Day. The actual term for the state I was in, is called p r e s. It pretty much made me completely unresponsive to everything going on - I was aware of everything going on, but absolutely unable to respond. People would talk to me, yell at me, and I knew it, but could say and do nothing. By the time I'd got to the point where I'd broken through on Christmas Day, I was totally freaking out and thought that I was stuck in a cloud. It was very scary. This is the first time I've ever had an experience like this and I hope it is the last. By the way, I had my transplant while all this was going on, and I'll know in about 3 weeks whether this was successful or not. In the time being, I'm doing as well as can be expected.
Take care everyone, thanks very much for all your good wishes and kind thoughts and I'll write again soon. Hope you all have a happy and healthy 2011.
Kurt
Thursday, December 23, 2010
Update
Hi Everyone-
Sorry we haven't had a chance to update the blog. Thank you to all who have been commenting and thinking about Kurt; we both appreciate it so much. Kurt has been too ill to get on his computer to type and give an update. The doctors think it is a reaction to one of the many medications he is on. Kurt has been sleeping a lot and trying to get better.
We just did the bone marrow transplant last night around midnight. His wonderful donor from Sweden donated AGAIN for us and gave Kurt more of his cells. Someone hand carried the cells from Sweden to San Diego for him. This was the best Christmas gift both of us have ever received and we will be forever grateful to him. Words cannot express how we felt when the cells arrived in our hospital room late last night for him.
Please keep the positive thoughts and prayers coming our way. We will continue to update our family and friends with accurate information/updates on this blog only as this was the reason it was created for everyone. Stay tuned for another update from Kurt when he gets better or from me as I receive it.
We wish you a very Merry Christmas and Happy New Year...
Love,
Kurt, Evey (and Floyd)
Sorry we haven't had a chance to update the blog. Thank you to all who have been commenting and thinking about Kurt; we both appreciate it so much. Kurt has been too ill to get on his computer to type and give an update. The doctors think it is a reaction to one of the many medications he is on. Kurt has been sleeping a lot and trying to get better.
We just did the bone marrow transplant last night around midnight. His wonderful donor from Sweden donated AGAIN for us and gave Kurt more of his cells. Someone hand carried the cells from Sweden to San Diego for him. This was the best Christmas gift both of us have ever received and we will be forever grateful to him. Words cannot express how we felt when the cells arrived in our hospital room late last night for him.
Please keep the positive thoughts and prayers coming our way. We will continue to update our family and friends with accurate information/updates on this blog only as this was the reason it was created for everyone. Stay tuned for another update from Kurt when he gets better or from me as I receive it.
We wish you a very Merry Christmas and Happy New Year...
Love,
Kurt, Evey (and Floyd)
Friday, November 26, 2010
11/26/10
Hi everyone, this would be day number 2 of my second round of chemo for this latest stint in the hospital. So far, not much as far as side effects except for some bad nausea, but as always, these things seem to hit me after the chemo ends rather than during. With a 3 day treatment, it's hard to tell when the side effects will come so we'll just have to wait and see. I made it through the last round of chemo with pretty much no down side, which in turn gave us a bad result, so I'm almost hoping I get hit really hard by this one. I do have to admit that there was a day, Wednesdayday of this week to be exact, that I got completely knocked on my ass. I had a headache that my medication just couldn't touch, and as a result wouldn't go away from morning until very late at night. On that same day, I had the worst nausea I've had to endure since I got in here, so both of those things together made it so bad that I seriously couldn't move for about 16 hours straight. And I'm serious when I say I couldn't move. I couldn't even talk it was so bad. Unfortunately that was after we had already received our bad news that round one didn't work, so the pain had no upside.
Round two is pretty close to round one with the exception of adding in one component called Mitoxantrone which turns the cocktail's name to CLAG-M as opposed to simply CLAG which is what the last mixture of chemo was. The CLAG alone is a combination of Cladorbine and Cytarabine. If you remember from my last message, the M is the component which was supposed to add some risk to me heart, but they have a way of monitoring pretty closely the effects this medicine is having on my heart. Our biggest worry is obviously that this round doesn't throw me into remission either. Until then we'll be thinking positively and preparing for the best news possible. And we have reason to. This round of chemo is supposed to be pretty heavy stuff. They have assured me that they took this as far as possible from a strength perspective, without taking on too much risk. The problem is that my body is starting to educate itself on how to deal with chemotherapy, so the effect it had on my body the first time we went through this is different compared to what the effect is now. This doesn't mean it's not going to work by any means, only that it's different. I really do feel we are going to get through this round with a favorable result, if not then we move on to the next set of options.
From a timing perspective, we will be doing another bone marrow biopsy in about 12 days from now, with results following roughly 3 days later. When the results come back in our favor, they want to move as quickly as possible to transplant. If the results are less than that, then we move on to other options. Bottom line is that we will know the next course of action in a couple of weeks. The world we live in right? We want our information and we want it now. Isn't that a song?
As difficult as that last batch of news was, Evey and I are taking it all in stride and concentrating on making this current round as successful as possible. We had a really nice turkey dinner last night brought from my Dad compliments of my Aunt and Uncle Josie and Hans. The food was a great reminder of what's waiting for us on the other side of this illness. Today we get round two with my Mother in Law Sonia coming down with leftovers from her and her brother's cooking yesterday. Both of these women and Evey's Uncle are incredible cooks, so to say we are lucky to have them hooking us up with Thanksgiving dinners would be an understatement. I personally can't indulge in the salads which kind of sucks, but everything else that's cooked is fair game, and fortunately they are coming during a time where my appetite is ok so I actually get to enjoy it.
We're making the most of it and actually finding time to have some fun and laugh. We continue to drain our doctors of information about current state condition and treatment and what lies ahead, so I guess my point is, we are definitely making the most of our time here. And above all else, Evey and I get to spend time with each other. When we're not fighting over the TV remote, we're walking the halls of the hospital spending some good time together. The biggest difference between here and home is that when we walk, we don't have Floyd at the end of a leash. Anyway, now I'm bumming myself out. No more about Floyd. That's about it anyway. You've got the latest medical update and also a peek into our hospital lives. As I said before, we are making the most of it and even starting to laugh a bit. It's really the only way we are going to get through it. Well that, and of course the love and support we get from you all on a daily basis. Please continue to send it our way in whatever form you feel fit. Take great care of yourselves and we'll catch up soon.
Evey and Kurt
Round two is pretty close to round one with the exception of adding in one component called Mitoxantrone which turns the cocktail's name to CLAG-M as opposed to simply CLAG which is what the last mixture of chemo was. The CLAG alone is a combination of Cladorbine and Cytarabine. If you remember from my last message, the M is the component which was supposed to add some risk to me heart, but they have a way of monitoring pretty closely the effects this medicine is having on my heart. Our biggest worry is obviously that this round doesn't throw me into remission either. Until then we'll be thinking positively and preparing for the best news possible. And we have reason to. This round of chemo is supposed to be pretty heavy stuff. They have assured me that they took this as far as possible from a strength perspective, without taking on too much risk. The problem is that my body is starting to educate itself on how to deal with chemotherapy, so the effect it had on my body the first time we went through this is different compared to what the effect is now. This doesn't mean it's not going to work by any means, only that it's different. I really do feel we are going to get through this round with a favorable result, if not then we move on to the next set of options.
From a timing perspective, we will be doing another bone marrow biopsy in about 12 days from now, with results following roughly 3 days later. When the results come back in our favor, they want to move as quickly as possible to transplant. If the results are less than that, then we move on to other options. Bottom line is that we will know the next course of action in a couple of weeks. The world we live in right? We want our information and we want it now. Isn't that a song?
As difficult as that last batch of news was, Evey and I are taking it all in stride and concentrating on making this current round as successful as possible. We had a really nice turkey dinner last night brought from my Dad compliments of my Aunt and Uncle Josie and Hans. The food was a great reminder of what's waiting for us on the other side of this illness. Today we get round two with my Mother in Law Sonia coming down with leftovers from her and her brother's cooking yesterday. Both of these women and Evey's Uncle are incredible cooks, so to say we are lucky to have them hooking us up with Thanksgiving dinners would be an understatement. I personally can't indulge in the salads which kind of sucks, but everything else that's cooked is fair game, and fortunately they are coming during a time where my appetite is ok so I actually get to enjoy it.
We're making the most of it and actually finding time to have some fun and laugh. We continue to drain our doctors of information about current state condition and treatment and what lies ahead, so I guess my point is, we are definitely making the most of our time here. And above all else, Evey and I get to spend time with each other. When we're not fighting over the TV remote, we're walking the halls of the hospital spending some good time together. The biggest difference between here and home is that when we walk, we don't have Floyd at the end of a leash. Anyway, now I'm bumming myself out. No more about Floyd. That's about it anyway. You've got the latest medical update and also a peek into our hospital lives. As I said before, we are making the most of it and even starting to laugh a bit. It's really the only way we are going to get through it. Well that, and of course the love and support we get from you all on a daily basis. Please continue to send it our way in whatever form you feel fit. Take great care of yourselves and we'll catch up soon.
Evey and Kurt
Tuesday, November 23, 2010
11/24/10
Hi everyone, yes, I changed the title once again. Instead of doing chemo + and all of that, we figured it would just be easier to go by dates. The main reason is because Evey and I just got the results from the bone marrow biopsy done on Monday, and the news in not what we were hoping for. They unfortunately were able to find traces of cancer cells in the results so back to square one we go. We've been here before so the shock is not as bad as you would think, but of course it's a let down. It took three rounds after my first diagnosis to kick me into remission, so again, we've been here before and we know how to handle it. We'll buckle down as we always do and get through this together.
As far as next steps are concerned, my oncologist will be working on that tonight. Due to the numerous complications from my last go 'round, they have to be careful of the chemo cocktail they give me. My heart is the biggest consideration due to my Atrial Flutter, but I'm confident he'll take the night to due what doctors due in this situation and come up with the best possible mixture of hell to put me through, and ultimitely get me back to remission. I have a feeling he was a bit too gun shy on this last one,which is why I came through it so easily and in the end had a bad result. If I have anything to say about it that will not happen again. If it were my choice I would have him put me through the biggest and baddest mixture yet, but I'm not the doctor and and I'm sure there are hundred other things that need to be considered in this. Regardless, what we just went though in round one didn't work, so on we move to round two. And in round two, we are gong to unleash a billion little Manny Pacquiao cells that are going to run through my body and destroy any Leukemia cells in their path.
As the information comes to us, updates will be coming out to you all. We again can't thank you enough for the love and support you keep throwing our way and I promise you we will keep our heads up, stay strong and be ready for what's coming next. So I've got Leukemia. There are people out there with much larger problems than that and have a fraction of the support system Evey and I have. Given all circumstances, we are very lucky to have you all in our corner, and we will get through this.
-Evey and Kurt
As far as next steps are concerned, my oncologist will be working on that tonight. Due to the numerous complications from my last go 'round, they have to be careful of the chemo cocktail they give me. My heart is the biggest consideration due to my Atrial Flutter, but I'm confident he'll take the night to due what doctors due in this situation and come up with the best possible mixture of hell to put me through, and ultimitely get me back to remission. I have a feeling he was a bit too gun shy on this last one,which is why I came through it so easily and in the end had a bad result. If I have anything to say about it that will not happen again. If it were my choice I would have him put me through the biggest and baddest mixture yet, but I'm not the doctor and and I'm sure there are hundred other things that need to be considered in this. Regardless, what we just went though in round one didn't work, so on we move to round two. And in round two, we are gong to unleash a billion little Manny Pacquiao cells that are going to run through my body and destroy any Leukemia cells in their path.
As the information comes to us, updates will be coming out to you all. We again can't thank you enough for the love and support you keep throwing our way and I promise you we will keep our heads up, stay strong and be ready for what's coming next. So I've got Leukemia. There are people out there with much larger problems than that and have a fraction of the support system Evey and I have. Given all circumstances, we are very lucky to have you all in our corner, and we will get through this.
-Evey and Kurt
Sunday, November 21, 2010
Chemo + Day 13
Hi everyone, greetings from the San Diego box, or at least that's what I'm calling my hospital room as of late. Not to worry, I'm not as distraught now as I was when I wrote my last update, but I'm not going to lie, it's still seems very small in here. Anyway, the adjustment period seemed to take much longer for me this time compared to stints in the past, but home is where the heart is, so we'll just have to call this home for now.
It's been a handful of days since my last upodate, so there are a few things I can fill you in on. The first is that I have seemed to have had an internal reaction to some medication which has caused me to break out into a pretty bad rash. I'd say a good 70% of my body is a very bright shade of red. And it's not the non-ichy kind either. It's unfortunately quite the contrary. It is extrememly uncomfortable and once you start scratching somewhere, you're screwed. You won't stop until you literally get so mad at yourself that you yell out a swear word and make yourself stop. And just as you're doing that, another little itch pops up somehere and away you go. Oh yes, it's quite a good time, especially when you have visitors. To treat it, I have to rub a cream all over the red area a couple of times a day. If it actually did something, I might be a little more excited about that process, but it really does very little except take time and waste medicine. They took a biopsy of the rash by taking a chunk out of my shoulder and sending it to the lab. The results came back saying it was a reaction to one of the many medicinnes I'm on. Unfortunately they can't pinpoint which one so we have to deal with this by way of trial and error, but I have so many that by the time we single out which medecine it actually is, I'll be past the 5 years in remission milestone and all will be good. That was obviously a joke, but regardless of all that, we'll keep trying until it does go away by itelf which hopefully is sooner rather than later.. Until then, I'll just have to live with it.
So that's the rash story. In addition to the rash, I started running a fever the other night. It started out at 102.5 and held pretty firm at that mark for a solid night. They attribute the fever to an internal infection dealing with my urinary or possibly my intestinal tract. Again, these things are very difficult to pinpoint, but after taking some blood and urine cutltures, that's what showed up. This is the type of thing that happens just about every day in every one of us, but being that my white blood cell count is still at 0, I have no immune system to fight it off. In a normal situation, this gets killed the second it pops it's head up from whatever hole it came from, but in my case it utrns into something. Luckily for me the fever only lasted for one day and night, and inside of 48 hours it was gone. My doctors did a great job of finding out what it was early enough, and treating it with the right stuff, so even in my very compromised immune system, it really had nowhere to run. The anti-biotics they put me on in response to the threat took care of it.
This turned out to be quite a scare because if you know anything about my past, you know that infections are what brought this house of cards crashing down when I first relapsed in April. To make matters even worse, at the time of the fever, I had a really intense headache which just wouldn't go away, so I asked them to hit me with a 35mg liquid dose of Dilaudid, which is a pain killer. It is no joke when I tell you that that dosage would literally kill a huge percentage of the population if they were in a situation where they were forced to take it. Not bragging by any means and is not something I am very proud of. It's really just a reflection of how high my tolerance for pain medication has grown. Anyway, back to the story. When they hit me with this monster dose to knock the headache out of my system, it did just that. Only it also caused my oxygen intake to plummet, forcing them to make me wear the oxygen intake tubes through my nose. It also dropped my blood pressure to dangerously low levels. I think the lowest it had dropped during that few hour period of time was 88/50. As I said, this episode lasted for only a few hours, but as you could imagine, it had us pretty worried and thinking of the past, which I never want to revisit ever again. It was a great relief to see those numbers start to climb soon after they dropped that fast. Before Evey and I went to sleep that night, the oxygen mask was off and my blood pressure was back to normal. Can you say, Huge sigh of relief? So that was Friday night of this week to give you a reference point in time.
Yesterday, (Saturday) was pretty uneventful except for still having to deal with this skin rash. It actually looked like it was backing off really good on Friday morning, but that was just a tease. It came back in a big way so no luck on this thing going away on it's own nice and early. That's ok, as long as my wife still kisses me, I have nothing to worry about.
So as I said earlier, my blood counts are still in the basement which is a good thing. They need to be there for at least a little while which implies the chemotherapy is doing it's job of whipping everything out. I'm scheduled to have a bone marrow biopsy done tomorrow morning which would be day 14. That needs to come back with a favorable result meaning negative...no cancer cells detectable. Given that my counts are so low still, it all looks really good and it should come back that way. The only thing that scares me is that I made it through this round of chemo with practically zero side effects. I know this is something I should normally be jumping for joy over, but it worries the hell out of me. That little pessemistic nodule in the back of my brain is telling me that maybe I feel so good because the chemo didn't work. The bood counts say different and those are the cold hard facts, but my body is making me think differently. There have been a total of two mornings where I didn't feel well. Outside of that, and the few side effects I mentioned earlier, I have yet to throw up once, or even lose my appetite...at all. To counter that arguement, they are pumping me with all sorts of medications to quell the chemo side effects, so maybe my body is just responding to those meds very well? I don't know. All I do know is that I feel way too good to have gone through a 5 day round of high dose chemotherapy. There is no hiding from the truth which will hopefully be told on Wednesday of this week. If they in fact do get me in for the biopsy early tomorrow morning, there is a good chance that the pathology lab can turn around the results by the end of the day on Wednesday. Otherwise we wait until next week sometime. Until then, I just have to find a way to tell that pessemistic nodule in my head to shut the hell up. Only good thoughts until the facts come out with answers.
So that's about it. Hopefully my next message out to all of you will report that this rash is gone, the biopsy results came back negative with zero complications, and my white cells have started to grow. Yes, I am a greedy bastard, but when it comes to things like this, would you expect anything different? I thought not. Keep sending all of your love and supoort, and we'll keep receiving it. You guys are the best and I wish you only knew how much of a huge part you have played in keeping me alive. With that said, be well and take good care of yourselves, another update to follow shortly.
Love,
-Evey and Kurt
It's been a handful of days since my last upodate, so there are a few things I can fill you in on. The first is that I have seemed to have had an internal reaction to some medication which has caused me to break out into a pretty bad rash. I'd say a good 70% of my body is a very bright shade of red. And it's not the non-ichy kind either. It's unfortunately quite the contrary. It is extrememly uncomfortable and once you start scratching somewhere, you're screwed. You won't stop until you literally get so mad at yourself that you yell out a swear word and make yourself stop. And just as you're doing that, another little itch pops up somehere and away you go. Oh yes, it's quite a good time, especially when you have visitors. To treat it, I have to rub a cream all over the red area a couple of times a day. If it actually did something, I might be a little more excited about that process, but it really does very little except take time and waste medicine. They took a biopsy of the rash by taking a chunk out of my shoulder and sending it to the lab. The results came back saying it was a reaction to one of the many medicinnes I'm on. Unfortunately they can't pinpoint which one so we have to deal with this by way of trial and error, but I have so many that by the time we single out which medecine it actually is, I'll be past the 5 years in remission milestone and all will be good. That was obviously a joke, but regardless of all that, we'll keep trying until it does go away by itelf which hopefully is sooner rather than later.. Until then, I'll just have to live with it.
So that's the rash story. In addition to the rash, I started running a fever the other night. It started out at 102.5 and held pretty firm at that mark for a solid night. They attribute the fever to an internal infection dealing with my urinary or possibly my intestinal tract. Again, these things are very difficult to pinpoint, but after taking some blood and urine cutltures, that's what showed up. This is the type of thing that happens just about every day in every one of us, but being that my white blood cell count is still at 0, I have no immune system to fight it off. In a normal situation, this gets killed the second it pops it's head up from whatever hole it came from, but in my case it utrns into something. Luckily for me the fever only lasted for one day and night, and inside of 48 hours it was gone. My doctors did a great job of finding out what it was early enough, and treating it with the right stuff, so even in my very compromised immune system, it really had nowhere to run. The anti-biotics they put me on in response to the threat took care of it.
This turned out to be quite a scare because if you know anything about my past, you know that infections are what brought this house of cards crashing down when I first relapsed in April. To make matters even worse, at the time of the fever, I had a really intense headache which just wouldn't go away, so I asked them to hit me with a 35mg liquid dose of Dilaudid, which is a pain killer. It is no joke when I tell you that that dosage would literally kill a huge percentage of the population if they were in a situation where they were forced to take it. Not bragging by any means and is not something I am very proud of. It's really just a reflection of how high my tolerance for pain medication has grown. Anyway, back to the story. When they hit me with this monster dose to knock the headache out of my system, it did just that. Only it also caused my oxygen intake to plummet, forcing them to make me wear the oxygen intake tubes through my nose. It also dropped my blood pressure to dangerously low levels. I think the lowest it had dropped during that few hour period of time was 88/50. As I said, this episode lasted for only a few hours, but as you could imagine, it had us pretty worried and thinking of the past, which I never want to revisit ever again. It was a great relief to see those numbers start to climb soon after they dropped that fast. Before Evey and I went to sleep that night, the oxygen mask was off and my blood pressure was back to normal. Can you say, Huge sigh of relief? So that was Friday night of this week to give you a reference point in time.
Yesterday, (Saturday) was pretty uneventful except for still having to deal with this skin rash. It actually looked like it was backing off really good on Friday morning, but that was just a tease. It came back in a big way so no luck on this thing going away on it's own nice and early. That's ok, as long as my wife still kisses me, I have nothing to worry about.
So as I said earlier, my blood counts are still in the basement which is a good thing. They need to be there for at least a little while which implies the chemotherapy is doing it's job of whipping everything out. I'm scheduled to have a bone marrow biopsy done tomorrow morning which would be day 14. That needs to come back with a favorable result meaning negative...no cancer cells detectable. Given that my counts are so low still, it all looks really good and it should come back that way. The only thing that scares me is that I made it through this round of chemo with practically zero side effects. I know this is something I should normally be jumping for joy over, but it worries the hell out of me. That little pessemistic nodule in the back of my brain is telling me that maybe I feel so good because the chemo didn't work. The bood counts say different and those are the cold hard facts, but my body is making me think differently. There have been a total of two mornings where I didn't feel well. Outside of that, and the few side effects I mentioned earlier, I have yet to throw up once, or even lose my appetite...at all. To counter that arguement, they are pumping me with all sorts of medications to quell the chemo side effects, so maybe my body is just responding to those meds very well? I don't know. All I do know is that I feel way too good to have gone through a 5 day round of high dose chemotherapy. There is no hiding from the truth which will hopefully be told on Wednesday of this week. If they in fact do get me in for the biopsy early tomorrow morning, there is a good chance that the pathology lab can turn around the results by the end of the day on Wednesday. Otherwise we wait until next week sometime. Until then, I just have to find a way to tell that pessemistic nodule in my head to shut the hell up. Only good thoughts until the facts come out with answers.
So that's about it. Hopefully my next message out to all of you will report that this rash is gone, the biopsy results came back negative with zero complications, and my white cells have started to grow. Yes, I am a greedy bastard, but when it comes to things like this, would you expect anything different? I thought not. Keep sending all of your love and supoort, and we'll keep receiving it. You guys are the best and I wish you only knew how much of a huge part you have played in keeping me alive. With that said, be well and take good care of yourselves, another update to follow shortly.
Love,
-Evey and Kurt
Wednesday, November 17, 2010
Chemo + Day 9
So De Ja Vu has nothing on this situation. I' have been in the hospital now for a total of 10 days, 9 since I started chemo, and nothing has come back to me as far as getting used to anything. Every day I wake up it's like waking up in a nightmare. I don't know why, but I seem to remember being in here before and being ok with the situation. You know what I mean...this is my situation so I just have to buckle down and deal with it. Well, not this time. Like I said, I wake up every morning, close my eyes and just wish I wasn't here. Yeah, it's that bad. I don't want to say there was novelty attached to it last time, but there is clearly a change from last time to this time, and it has misery written all over it. I'll hopefully at some point settle in and get used to it, but for now it is a daily battle to keep my head up and just take the situation for what it is. OK, now I feel like I'm rambling so let me stop, I apologize for that.
9 days since chemo began, 4 since it stopped and I'm feeling pretty lucky to say that I seem to have gotten through it pretty easy. I have had some difficult mornings where food looks absolutely disgusting, but no throwing up which I am so happy about. Throwing up is pretty much the worst it can get for me. For some reason, I just can't handle it so I have been lucky to not have to deal with it. This is ususally how it goes for me though. I get through the chemo pretty good but then a sneak attack will hit me a couple of weeks later and down I'll go. None of that really matters at this point. I just want to get the hell out of here and get back to my house, my bed, my dog and my life. Living in a 15x20 foot room for a long period of time is not conducive to good mental health. With that, I'll stop complaining about my living conditions. You've heard it all before anyway right?
One thing that hasn't changed is the morning visit by my full doctor team and the tag along group of about 6 students. It gets pretty cramped in here when Evey and I are trying to wake up and in walks 8-10 people asking how you are feeling, looking to see if you're breathing right, feeling your ankles to see if they are swollen, looking at your tubing, checking the pain and nausea scales...it's just nonstop nonsense and is every morning. The good part about this part of the day is that I get an update on my cancer situation and an idea of what's coming up. As of this morning, my white cell counts are at 0 which is exactly where they need to be. At this point, I need to wait it out like always and let the chemo do it's work, which is what it is doing. In about a week or so they will do another bone marrow biopsy and see if I am still in remission. Those results will determine us going straight to bone marrow transplant or waiting it out, letting my cell count situation strengthen.
So here is the breakdown: In about 5 days we will do a bone marrow biopsy. Assuming my body has reacted favorably to the treatment and the biopsy comes back negative, we will start the process for transplantation a couple of weeks from now. The actual transplant date will be a bit less than 3 weeks from now. My donor has been a superstar as always and has pretty much opened up his schedule to whatever we need. The other thing I am trying to do is get a few days home before the transplant. Not sure if the doc is going to go for that or not, we shall see.
So that's pretty much it for now. Same story, different dates. It seems like this is becoming a recurring nightmare, but third time's a charm and that's how we're treating it. Yes, we're in a pretty crappy place right now but it's nowhere Evey and I haven't been before . Luckily for me just negotiated being able to take a quick walk outside of my floor and into the lobby. Doesn't sound like much but trust me, when you're couped up like this, every step outside helps. I just need to get these tubes out of my arm and sleep in my own bed...then and only then will I start to feel better. Take care everyone and thanks for everything. We'll keep you posted.
9 days since chemo began, 4 since it stopped and I'm feeling pretty lucky to say that I seem to have gotten through it pretty easy. I have had some difficult mornings where food looks absolutely disgusting, but no throwing up which I am so happy about. Throwing up is pretty much the worst it can get for me. For some reason, I just can't handle it so I have been lucky to not have to deal with it. This is ususally how it goes for me though. I get through the chemo pretty good but then a sneak attack will hit me a couple of weeks later and down I'll go. None of that really matters at this point. I just want to get the hell out of here and get back to my house, my bed, my dog and my life. Living in a 15x20 foot room for a long period of time is not conducive to good mental health. With that, I'll stop complaining about my living conditions. You've heard it all before anyway right?
One thing that hasn't changed is the morning visit by my full doctor team and the tag along group of about 6 students. It gets pretty cramped in here when Evey and I are trying to wake up and in walks 8-10 people asking how you are feeling, looking to see if you're breathing right, feeling your ankles to see if they are swollen, looking at your tubing, checking the pain and nausea scales...it's just nonstop nonsense and is every morning. The good part about this part of the day is that I get an update on my cancer situation and an idea of what's coming up. As of this morning, my white cell counts are at 0 which is exactly where they need to be. At this point, I need to wait it out like always and let the chemo do it's work, which is what it is doing. In about a week or so they will do another bone marrow biopsy and see if I am still in remission. Those results will determine us going straight to bone marrow transplant or waiting it out, letting my cell count situation strengthen.
So here is the breakdown: In about 5 days we will do a bone marrow biopsy. Assuming my body has reacted favorably to the treatment and the biopsy comes back negative, we will start the process for transplantation a couple of weeks from now. The actual transplant date will be a bit less than 3 weeks from now. My donor has been a superstar as always and has pretty much opened up his schedule to whatever we need. The other thing I am trying to do is get a few days home before the transplant. Not sure if the doc is going to go for that or not, we shall see.
So that's pretty much it for now. Same story, different dates. It seems like this is becoming a recurring nightmare, but third time's a charm and that's how we're treating it. Yes, we're in a pretty crappy place right now but it's nowhere Evey and I haven't been before . Luckily for me just negotiated being able to take a quick walk outside of my floor and into the lobby. Doesn't sound like much but trust me, when you're couped up like this, every step outside helps. I just need to get these tubes out of my arm and sleep in my own bed...then and only then will I start to feel better. Take care everyone and thanks for everything. We'll keep you posted.
Tuesday, November 9, 2010
Chemo Day 0
Chemo Day 0 is a new title saying that since we found out that I relapsed on Friday, our first day of chemo will be tonight. Going forward the days will increase until we get to transplant at which the title will change to simplay Day 0 on transplant day and will again increase each day by 1. Ok so enough of the house keeping stuff.
As I mentioned above, Evey and I found out I relapsed on Friday while I was at the dentist. I know what you're thinking. How could the dentist get any worse? Well I guess I just answered that question. Anyway, I'm at the dentist in the waiting room when my phone rings. I knew who it was so I answered it and as soon as I heard him say hello, I knew what the results were. The tough part was having to cancel a trip to Cabo that Evey and I had planned for a wedding for one of her best friends. We were both looking forward to it and I know how important it was for Evey to be there, so it really killed me to have to cancel it. I begged her still to go, but just as a good wife would do, she absolutely refused and said she would stay back with me.
We got here last night, moved our stuff in and quickly got used to the fact that this would be our home for at least the next few months. So as I sit here now and type this message, I am about an hour away from yet another round of high dose chemotherapy, I have my dinner sitting in front of me for which I have already lost my appetite and one of the pumps won't stop beeping. How can anyone complain about life when they have so many good things going for them at one time?
So that's it for now. Chemo starts tonight and will go for 5 days. At that point we wait for a few weeks to let the poison do what it is supposed to do and we do another bone marrow biopsy. Then based on the results, our next month is decided. Positive results mean we move on to transplant and negative results will just end up slowing things drastically down. This all happened so fast so it will take some getting used to. As always, we will do what we have learned to do best which is power through this stuff as best as we can and punch out through the other side. As always, thanks for reading and we'll do our best to keep you updated.
As I mentioned above, Evey and I found out I relapsed on Friday while I was at the dentist. I know what you're thinking. How could the dentist get any worse? Well I guess I just answered that question. Anyway, I'm at the dentist in the waiting room when my phone rings. I knew who it was so I answered it and as soon as I heard him say hello, I knew what the results were. The tough part was having to cancel a trip to Cabo that Evey and I had planned for a wedding for one of her best friends. We were both looking forward to it and I know how important it was for Evey to be there, so it really killed me to have to cancel it. I begged her still to go, but just as a good wife would do, she absolutely refused and said she would stay back with me.
We got here last night, moved our stuff in and quickly got used to the fact that this would be our home for at least the next few months. So as I sit here now and type this message, I am about an hour away from yet another round of high dose chemotherapy, I have my dinner sitting in front of me for which I have already lost my appetite and one of the pumps won't stop beeping. How can anyone complain about life when they have so many good things going for them at one time?
So that's it for now. Chemo starts tonight and will go for 5 days. At that point we wait for a few weeks to let the poison do what it is supposed to do and we do another bone marrow biopsy. Then based on the results, our next month is decided. Positive results mean we move on to transplant and negative results will just end up slowing things drastically down. This all happened so fast so it will take some getting used to. As always, we will do what we have learned to do best which is power through this stuff as best as we can and punch out through the other side. As always, thanks for reading and we'll do our best to keep you updated.
Wednesday, October 20, 2010
10-20-10
Hi everyone,
been a while hasn't it? Not much has gone on in the past month, but I do have some things to update you on. To start out, I'm feeling pretty well lately. Since my last update, it has pretty much been smooth sailing with the exception of about a week stretch. This was an absolutely horrible time for me. I couldn't eat, drink, or pretty much move. It was seriously worse than some of my bouts of crap after chemo. I don't know where it came from, how I got it or how it went away, but it was pretty damn close to how I felt when I had Echoli in Costa Rica. It started out on a Tuesday morning a couple of weeks ago, and I really just felt bad all around. I had a small breakfast and took Floyd out. From there it progressively got worse and worse, to the point where I didn't want to move, and food and drink sounded just aweful. Aside from a few bites of some fruit and a peanut butter and jelly sandwich, I had nothing to eat that entire time. It got so bad that I had to leave a good friend's wedding early. I made it through the ceremony, but had to pull the shoot after that and miss the reception. I felt terrible about it but just couldn't do it, so I left. Anyway, that was the Sunday following the Tuesday when it started. Every night that week I would go to sleep prayng that this terrible feeling would go away, then I would wake up the next morning feeling worse than the night before. It finally went away the next Tuesday, so for 7 full days I was in pure hell. Luckily enough for me, that as been pretty much it when it comes to feeling bad. I can only hope that I never have to go through that again, but that is just dreaming.
The other update I have is the results I got from the latest catscan on my lungs. Good news!!! The surgeon was successfull in getting everything out he was supposed to. There are still some specks on the lung, but those are of no consequence. I'm pretty much good to go and in recovery mode. I still have to do bags of antibiotics through IV every now and then, but that is really just to make sure that if there is any infection hiding somewhere, we'll kill it. Now it's all about staying active and trying to get that lung back into shape. I have tried to run a few times, but that is just too much right now. After a quarter of a mile or so, I am completely out of breath, almost to the point where I feel like I'm suffocating. My plan is to take it slow and mellow. I want to give the stationary bike a try, and maybe some light weights, and if that works out, I can start to work up from there...we shall see.
My Atrial Flutter has been kept under control pretty well by the medications I'm on. There have been a few times where I've take the medication late, and my heart popped into that 250 beats a minute mode. Even though the doctors have told me that it's not anything to really worry about, that is pretty scary. All I can say is the heart is an amazing thing for it to be able to take that many beats per minute, and have it not turn into a full blown heart attack. To fix it, they will probably do the cathetor thing where they put it in my hip and run it all the way up to the heart. When it's there, it has a burning device at the end of the tube that burns the part of the upper heart that causing the problem. Then they pull the tube out and I'm good to go. Pretty crazy that they can do that as an out patient procedure. I don't know, to me that sounds pretty gnarley but as I said, it's a pretty easy thing for them to do and it should fix the flutter permanently.
Finally, my bone marrow transplant is scheduled for the end of November. We don't have an exact date yet, but it will be right around that time. It obviously depends on when my donor has time. When our coordinators figure all of that out, I'll be a happy guy. I know it's right around the corner which is a very good feeling. This pneumonia has ruined enough of my life, so it's really good knowing that we're finally past it and done with that horrible chapter. Now we can move on to the important stuff. Soon enough, I'll be on the road to recovery and closer to getting my life back. I just want to get back to work and start exercising again...that is pretty much it and trust me, that time cannot come soon enough.
That's it everyone. I hope you are all doing well and I thank you once again for your support, love and prayers. Keep it all coming because I use every ounce of it. Take care, be well and make sure you have some sort of fun every day.
-Kurt
been a while hasn't it? Not much has gone on in the past month, but I do have some things to update you on. To start out, I'm feeling pretty well lately. Since my last update, it has pretty much been smooth sailing with the exception of about a week stretch. This was an absolutely horrible time for me. I couldn't eat, drink, or pretty much move. It was seriously worse than some of my bouts of crap after chemo. I don't know where it came from, how I got it or how it went away, but it was pretty damn close to how I felt when I had Echoli in Costa Rica. It started out on a Tuesday morning a couple of weeks ago, and I really just felt bad all around. I had a small breakfast and took Floyd out. From there it progressively got worse and worse, to the point where I didn't want to move, and food and drink sounded just aweful. Aside from a few bites of some fruit and a peanut butter and jelly sandwich, I had nothing to eat that entire time. It got so bad that I had to leave a good friend's wedding early. I made it through the ceremony, but had to pull the shoot after that and miss the reception. I felt terrible about it but just couldn't do it, so I left. Anyway, that was the Sunday following the Tuesday when it started. Every night that week I would go to sleep prayng that this terrible feeling would go away, then I would wake up the next morning feeling worse than the night before. It finally went away the next Tuesday, so for 7 full days I was in pure hell. Luckily enough for me, that as been pretty much it when it comes to feeling bad. I can only hope that I never have to go through that again, but that is just dreaming.
The other update I have is the results I got from the latest catscan on my lungs. Good news!!! The surgeon was successfull in getting everything out he was supposed to. There are still some specks on the lung, but those are of no consequence. I'm pretty much good to go and in recovery mode. I still have to do bags of antibiotics through IV every now and then, but that is really just to make sure that if there is any infection hiding somewhere, we'll kill it. Now it's all about staying active and trying to get that lung back into shape. I have tried to run a few times, but that is just too much right now. After a quarter of a mile or so, I am completely out of breath, almost to the point where I feel like I'm suffocating. My plan is to take it slow and mellow. I want to give the stationary bike a try, and maybe some light weights, and if that works out, I can start to work up from there...we shall see.
My Atrial Flutter has been kept under control pretty well by the medications I'm on. There have been a few times where I've take the medication late, and my heart popped into that 250 beats a minute mode. Even though the doctors have told me that it's not anything to really worry about, that is pretty scary. All I can say is the heart is an amazing thing for it to be able to take that many beats per minute, and have it not turn into a full blown heart attack. To fix it, they will probably do the cathetor thing where they put it in my hip and run it all the way up to the heart. When it's there, it has a burning device at the end of the tube that burns the part of the upper heart that causing the problem. Then they pull the tube out and I'm good to go. Pretty crazy that they can do that as an out patient procedure. I don't know, to me that sounds pretty gnarley but as I said, it's a pretty easy thing for them to do and it should fix the flutter permanently.
Finally, my bone marrow transplant is scheduled for the end of November. We don't have an exact date yet, but it will be right around that time. It obviously depends on when my donor has time. When our coordinators figure all of that out, I'll be a happy guy. I know it's right around the corner which is a very good feeling. This pneumonia has ruined enough of my life, so it's really good knowing that we're finally past it and done with that horrible chapter. Now we can move on to the important stuff. Soon enough, I'll be on the road to recovery and closer to getting my life back. I just want to get back to work and start exercising again...that is pretty much it and trust me, that time cannot come soon enough.
That's it everyone. I hope you are all doing well and I thank you once again for your support, love and prayers. Keep it all coming because I use every ounce of it. Take care, be well and make sure you have some sort of fun every day.
-Kurt
Friday, September 17, 2010
9-17-2010
So, I'm not sure how much detail I am going to get into, but a lot has happened since my last message. I'll try to keep it short and sweet, but that may be a little tough given the events of the last few weeks.
Anyway, let me start with the surgery, which finally came on Sept 23rd. I could not have been happier going in, thinking this would be the end of my bout with pneumonia and the start of my new bone marrow transplant journey. All of that was correct, but it was a painful experience to say the least. So the 23rd came and all was good. I was in pre-op getting set up with all of the IV's, as well as getting hooked up with an epidural. I guess this is common for the surgery I was about to have done. In fact, the doctor pulled my family aside and said what he was about to do to me was the most painful procedure you could do to anyone. So with that said, the epidural is a must right??? Wrong. They spent 2 hours trying to find a spot in my spine that worked. For 2 hours I was draped over a pillow with my back arched as much as it could be arched, while they picked and poked along my spine to try to find a spot that worked. Well, unfortunately they never found one. So because they had already spent two hours trying to do this, we were way behind, so the surgeon and his team decided it was time to go forward with the surgery. My last memory was asking the epidural guy if I was going to be in a world of hurt because of they couldn't find a spot. He said there were other ways of dealing with the pain and i'll be fine. Well, that could not have been more false. When they were done fileting my side open and cutting out my lung, I came out of my sleep. Please believe me when I tell you I was in the worst pain you could ever imagine. They had no idea how high my tolerance for pain medication was, so they were giving me doses that were a fraction of what they should have been. It finally took them about 5 hours to get it to a point where I could tolerate it. I forced myself to go to sleep and the nightmare was over.
When I woke up the next day, I was still in pain, but not nearly as much as the night before and they seemed to have the right pain med cocktail which helped. Ha, my thoughts of coming out of the surgery, floating on a pain med cloud could not have been further from reality. In truth, I never, ever comfortable from the moment I came out of surgery, to the time I was released 8 days later. It was a very rough road but the pain is now pretty much gone and now all I am dealing with is tightness and some soreness. Nothing I would consider as pain.
So I was released from the hospital post surgery on September 1st. At that point everything seemed fine. I was taking things slow but still being active like the doctors told me. The problem now was that I was getting really light headed at times, and for the most part, felt like crap. I crumbled to the floor a couple of times and almost completely passed out a few times as well. During these episodes my heart would race faster than I had ever felt, and you could see my heart almost jumping out of my chest. Finally, on Friday September 10th, my dad and I drove down to San Diego for a quick doctor visit to see what the hell was going on. As with all doctor visits, the first thing they do is check blood pressure, heart rate and some other vitals. Well, my heart rate was 246 beats per minute. Inside of 10 minutes, I was surrounded by 15 medics, a few doctors with two fire trucks and an ambulance out front. I have been through a lot in the last couple of years, but I have never seen a response like this. It was crazy, but I guess it was necessary. They immediately admitted me to the hospital and started trying to figure things out. Turns out I have whats called an Atrial Flutter which is basically a condition where my heart beats out of rhythm, and can sometimes beat uncontrollably like what was happening with me. My heart wasn't beating at that crazy pace all of the time. It really only happened a few times a day, but it was serious none the less.
To treat it they almost shocked my heart back into the right pace. It's normal to do this for an A Flutter, but it can sometimes also be handled by medication. Luckily for me, the medication went in first and my heart responded. So as of now, my heart is beating at a normal pace and all seems good. The meds I'm on are what are making my heart beat right, but I still have this A Flutter. There is a good chance that my heart will flip back into it's normal, natural rhythm, but if not, then they will probably have to shock me. I was in the hospital this time for 4 days while they kept me there for close observation. During that time, my heart hit the 250 range a few times, but after the process of elimination, they found the right meds to normalize my heart rate. I can only hope that my heart does pop itself back into rhythm, because getting shocked by those paddles on my chest does not sound like a good time.
Since my release on Monday, I have been feeling great and my heart has been beating fine. I was at the doctor yesterday and they said everything looked good as well. My blood counts look great and my heart sounded normal, so as of now, all is good.
As far as the future holds, they have to let me lung heal for a few more weeks before they can really go in the and determine if the infection is gone. Until then, it's walking every day and taking the right meds which will hopefully clean anything out that was hanging around. I'm still on the IV every other day, but like I said, it's all in an effort to clean everything out, so I'll live with it. Nothing can really be done on the bone marrow transplant side until we figure out what is going on with the lung, but if everything goes according to plan, we are targeting very late November/early December for the transplant. A lot has to happen between now and then to make that a reality, but it feels great to even be discussing it again. Sorry for the extra long update, but as you can see, a lot has happened. Take care everyone and be well.
Anyway, let me start with the surgery, which finally came on Sept 23rd. I could not have been happier going in, thinking this would be the end of my bout with pneumonia and the start of my new bone marrow transplant journey. All of that was correct, but it was a painful experience to say the least. So the 23rd came and all was good. I was in pre-op getting set up with all of the IV's, as well as getting hooked up with an epidural. I guess this is common for the surgery I was about to have done. In fact, the doctor pulled my family aside and said what he was about to do to me was the most painful procedure you could do to anyone. So with that said, the epidural is a must right??? Wrong. They spent 2 hours trying to find a spot in my spine that worked. For 2 hours I was draped over a pillow with my back arched as much as it could be arched, while they picked and poked along my spine to try to find a spot that worked. Well, unfortunately they never found one. So because they had already spent two hours trying to do this, we were way behind, so the surgeon and his team decided it was time to go forward with the surgery. My last memory was asking the epidural guy if I was going to be in a world of hurt because of they couldn't find a spot. He said there were other ways of dealing with the pain and i'll be fine. Well, that could not have been more false. When they were done fileting my side open and cutting out my lung, I came out of my sleep. Please believe me when I tell you I was in the worst pain you could ever imagine. They had no idea how high my tolerance for pain medication was, so they were giving me doses that were a fraction of what they should have been. It finally took them about 5 hours to get it to a point where I could tolerate it. I forced myself to go to sleep and the nightmare was over.
When I woke up the next day, I was still in pain, but not nearly as much as the night before and they seemed to have the right pain med cocktail which helped. Ha, my thoughts of coming out of the surgery, floating on a pain med cloud could not have been further from reality. In truth, I never, ever comfortable from the moment I came out of surgery, to the time I was released 8 days later. It was a very rough road but the pain is now pretty much gone and now all I am dealing with is tightness and some soreness. Nothing I would consider as pain.
So I was released from the hospital post surgery on September 1st. At that point everything seemed fine. I was taking things slow but still being active like the doctors told me. The problem now was that I was getting really light headed at times, and for the most part, felt like crap. I crumbled to the floor a couple of times and almost completely passed out a few times as well. During these episodes my heart would race faster than I had ever felt, and you could see my heart almost jumping out of my chest. Finally, on Friday September 10th, my dad and I drove down to San Diego for a quick doctor visit to see what the hell was going on. As with all doctor visits, the first thing they do is check blood pressure, heart rate and some other vitals. Well, my heart rate was 246 beats per minute. Inside of 10 minutes, I was surrounded by 15 medics, a few doctors with two fire trucks and an ambulance out front. I have been through a lot in the last couple of years, but I have never seen a response like this. It was crazy, but I guess it was necessary. They immediately admitted me to the hospital and started trying to figure things out. Turns out I have whats called an Atrial Flutter which is basically a condition where my heart beats out of rhythm, and can sometimes beat uncontrollably like what was happening with me. My heart wasn't beating at that crazy pace all of the time. It really only happened a few times a day, but it was serious none the less.
To treat it they almost shocked my heart back into the right pace. It's normal to do this for an A Flutter, but it can sometimes also be handled by medication. Luckily for me, the medication went in first and my heart responded. So as of now, my heart is beating at a normal pace and all seems good. The meds I'm on are what are making my heart beat right, but I still have this A Flutter. There is a good chance that my heart will flip back into it's normal, natural rhythm, but if not, then they will probably have to shock me. I was in the hospital this time for 4 days while they kept me there for close observation. During that time, my heart hit the 250 range a few times, but after the process of elimination, they found the right meds to normalize my heart rate. I can only hope that my heart does pop itself back into rhythm, because getting shocked by those paddles on my chest does not sound like a good time.
Since my release on Monday, I have been feeling great and my heart has been beating fine. I was at the doctor yesterday and they said everything looked good as well. My blood counts look great and my heart sounded normal, so as of now, all is good.
As far as the future holds, they have to let me lung heal for a few more weeks before they can really go in the and determine if the infection is gone. Until then, it's walking every day and taking the right meds which will hopefully clean anything out that was hanging around. I'm still on the IV every other day, but like I said, it's all in an effort to clean everything out, so I'll live with it. Nothing can really be done on the bone marrow transplant side until we figure out what is going on with the lung, but if everything goes according to plan, we are targeting very late November/early December for the transplant. A lot has to happen between now and then to make that a reality, but it feels great to even be discussing it again. Sorry for the extra long update, but as you can see, a lot has happened. Take care everyone and be well.
Thursday, August 19, 2010
8-19-2010
Hi everyone, there really isn't much to update you on except that my surgery got moved from today to Monday. There were some emergency transplants that came in so everyone got bumped. It was a tough pill to swallow at first, but as they days have gone by, my mod has gotten better. To make matters worde, the location was moved as well. Instead of Thornton hospital, it got moved to Hillcrest which is bit further down the freeway. I am hoping it is as good as Thornton.
As far as the surgery goes, they will be cutting a 6 inch incision about 3 inched below my armpit. Then they will spread open my ribs and go in and cut out the infected part of the lung. The whole thing shouldn't take longer than 2 hours. All in all, I should be in the hospiatl for 5-7 days, with 4-6 weeks of recovery at home to follow. They are expecting me to be in a good amount of pain due to the whole rib spreading thing, but that's what good meds are for right. I really don't think anything could be worse than the crap I had to deal with the last time I was in the hospital. We shall see.
Outside of that, I've been feeling well and waiting impatiently for Monday. Evey and I go out just about every day for a good 3-5 mile walk with Floyd, which has been very good for my lung strength. I feel as though I'm going into surgery as strong as can be, so now it's up to the doctors. I just hope they go in there and cut out all of the infection. It is going to be a very difficult discussion for all parties involved if they tell me there is still some infection. OK, negative thoughts out... I just want to get past the surgery, recover as quickly as possible and move on to the bone marroe transplant. Then my friends, I start to get my life back and i am once again a happy boy. Take care everyone and enjoy the summer, especially since it just started a few days ago. I'll send out another update soon after the surgery.
As far as the surgery goes, they will be cutting a 6 inch incision about 3 inched below my armpit. Then they will spread open my ribs and go in and cut out the infected part of the lung. The whole thing shouldn't take longer than 2 hours. All in all, I should be in the hospiatl for 5-7 days, with 4-6 weeks of recovery at home to follow. They are expecting me to be in a good amount of pain due to the whole rib spreading thing, but that's what good meds are for right. I really don't think anything could be worse than the crap I had to deal with the last time I was in the hospital. We shall see.
Outside of that, I've been feeling well and waiting impatiently for Monday. Evey and I go out just about every day for a good 3-5 mile walk with Floyd, which has been very good for my lung strength. I feel as though I'm going into surgery as strong as can be, so now it's up to the doctors. I just hope they go in there and cut out all of the infection. It is going to be a very difficult discussion for all parties involved if they tell me there is still some infection. OK, negative thoughts out... I just want to get past the surgery, recover as quickly as possible and move on to the bone marroe transplant. Then my friends, I start to get my life back and i am once again a happy boy. Take care everyone and enjoy the summer, especially since it just started a few days ago. I'll send out another update soon after the surgery.
Friday, August 6, 2010
***Please Read***
Hi everyone, I bet you're wondering why there is a new message so soon after my last one. Well I won't keep you in suspence. I don't have much to update you on except that the communication vehicle for these messages will be changing. Unfortunately, there are some companies out there blocking this site from their employee's use. As a result, there are a bunch of people who want to follow along this story who now can't so I've decided to move it. It's unfortunate because this Blog site was working well until now...oh well, all good things must come to an end.
So out goes Blogspot, in comes Facebook. This is the first I have ever used Facebook so it may take me a while to get it figured out. I don't know if you have to be my "friend" or not to read my postings, but I'll try to make sure it's open to everyone. It seems Facebook is the site that just about everyone has access to and is most likely already a member of, so this should be pretty painless.
If I'm wrong and you feel this is still the best way to get these messages out, go ahead and let me know, I'll still be checking this site. But I also want to know the other side. If Facebook is the best way to go, then I want to know that too. Evey helped me set up my Facebook page the other night so it should be ready to go, but I still have to learn how to use it for what I want to do so give me some time. Hopefully this is good news for some of you and is better for the this group as a whole, we'll see.
No changes to the lung surgery schedule or anything else coming up. I'm just waiting patiently as always for that day to come. Thanks everyone, and I'm serious about letting me know your thoughts about this change. I can very easily not do it as well. Take care and have some fun. Maybe we'll run into each other at the US Open this weekend in HB...who knows?
So out goes Blogspot, in comes Facebook. This is the first I have ever used Facebook so it may take me a while to get it figured out. I don't know if you have to be my "friend" or not to read my postings, but I'll try to make sure it's open to everyone. It seems Facebook is the site that just about everyone has access to and is most likely already a member of, so this should be pretty painless.
If I'm wrong and you feel this is still the best way to get these messages out, go ahead and let me know, I'll still be checking this site. But I also want to know the other side. If Facebook is the best way to go, then I want to know that too. Evey helped me set up my Facebook page the other night so it should be ready to go, but I still have to learn how to use it for what I want to do so give me some time. Hopefully this is good news for some of you and is better for the this group as a whole, we'll see.
No changes to the lung surgery schedule or anything else coming up. I'm just waiting patiently as always for that day to come. Thanks everyone, and I'm serious about letting me know your thoughts about this change. I can very easily not do it as well. Take care and have some fun. Maybe we'll run into each other at the US Open this weekend in HB...who knows?
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