Kurt Thallmayer

Kurt's Celebration of Life - May 18, 2011 Re-Post

2011-05-13T10:55:00.000-07:00

Sorry all, Blogspot.com had a technical problem, so we had to re-post the information below. No changes from before.

Kurt's Celebration of Life will take place on Wednesday, May 18th at 4pm:

St. Joachim Church
1964 Orange Avenue
Costa Mesa, CA 92627
949-574-7400

All are invited to attend. In lieu of a Guestbook, please sign Kurt's blog with your favorite memories or words you would like to share...

May 10, 2011

2011-05-10T13:13:00.000-07:00

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.

4/30/11- Update

2011-04-30T18:31:00.000-07:00

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)

Please keep Kurt in your thoughts and prayers

2011-04-25T17:04:00.000-07:00

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)

Day + 79 (March 11th, 2011)

2011-03-11T18:03:00.000-08:00

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.

Day + 40 (February 1, 2011)

2011-02-01T14:53:00.000-08:00

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...

Day + 34 (Jan 26, 2011)

2011-01-26T17:53:00.000-08:00

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

Day + 26 (Jan18, 2011)

2011-01-18T18:15:00.000-08:00

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

Day + 13

2011-01-05T15:21:00.000-08:00

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.

December 27th, 2010

2010-12-27T13:29:00.000-08:00

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

Update

2010-12-23T13:56:00.000-08:00

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)

11/26/10

2010-11-26T10:32:00.000-08:00

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

11/24/10

2010-11-23T17:33:00.000-08:00

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

Chemo + Day 13

2010-11-21T06:58:00.000-08:00

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

Chemo + Day 9

2010-11-17T13:53:00.000-08:00

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.

Chemo Day 0

2010-11-09T19:05:00.000-08:00

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.

10-20-10

2010-10-20T17:31:00.000-07:00

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

9-17-2010

2010-09-17T11:43:00.000-07:00

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.

8-19-2010

2010-08-19T18:40:00.000-07:00

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.

Please Read

2010-08-06T10:49:00.001-07:00

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?

Day + ^%$#

2010-08-04T09:20:00.000-07:00

It's funny, when I first threw that title up there with the Day + $%^&#, I honestly figured it would be a few weeks, if not a couple, and we'd be in real day + territory in no time. Who would have thought that we'd be here 4 months later and I'm still no closer to remission benchmarks than I was when I left the hospital for the "quick" two week break back in May? I certainly didn't. I think you all fully understand my level of frustration when it comes to things not moving forward at the pace I would have wanted, so I'll leave it at that, but there is a ray of hope out on the horizon.

The results are back from the VQ scan, the VO2 Max, CT scans and all other pulmonary tests, and we finally have a clear way forward. I never thought I'd be excited about going under the knife, but if it means that we can finally close the door on the pneumonia I contracted 4 months ago during chemo, I'll do cartwheels. So back to results...after finally having all of the information my doctors needed to make the decision on how to move forward, we're here. The decision has been made to surgically remove the lower lobe of my right lung which contains all of the infection. Once that is out, my lung should be squeaky clean and we can FINALLY move forward with treating my leukemia.

All of the test results told the story that my lungs are in good health and that they should be able to handle the short and long term ramifications of surgery. It does mean I will lose some lung capacity for the rest of my life, but the remaining right lung and of course the left, should be able to somewhat compensate for what has been lost. The lung won't regenerate with actual lung function, but can expand to replace what has been taken out. Bottom line is I won't be running marathon's any time soon...or ever for that matter, but if I can live somewhat of a normal life that includes a hearty level of exercise, I think I'm ok with that. But even with all of that said, it's still hard not to think that all of this was so unnecessary and how unlucky I was that this crazy form of fungal pneumonia just decided to sneak in and cause all of this havoc. It's not like my plate wasn't already full of crap, but that's when you just shake your head and say the same thing you've told yourself a million times over the last few years. Everyone has their own version of crap. This is mine so I have to deal with it as best as I can.

So that's what I'm doing and that's how we'll get through this. The earliest they could get me in for surgery is two weeks from Thursday which would be August 19th...and trust me, I pushed to have it done ASAP, but this was it. Anyway, the 19th it is. I don't have many details on what the surgery entails and how it will be performed, but I do know that I will spend 5-6 days in the hospital and another 4-6 weeks of recovery after that. I would love it if they could start my leukemia treatments during recovery, but that will be up to the docs. We'll see what happens.

Outside of that I've been feeling really good lately. Evey and I have been taking Floyd out just about every day for some really cool hikes in our area which range anywhere from 3-6 miles at a time depending on how ambitious we are. Floyd loves it, we love it and it couldn't be better for my health. So that's it for now kids. Thanks again for your incredible support. Things seem to finally be getting on track which couldn't make me happier. More updates to follow...

Day + %^$#@

2010-07-21T11:45:00.000-07:00

Hi everyone, I don't do this enough at all, so let me start by saying thank you to everyone who has chimed in with support over email, in person and on this blog. After reading them this morning while watching the Angels coming back against the Steinbrennerless Yankees, some of these comments literally crack me up and others help give me optimism. Again, I don't do it enough so thank you all again. It does more than you can imagine.

Since my last message, a lot has happened. I have taken on my new pneumonia medication, we have successfuly moved the infusions of that new medication to the UCI medical center in Orange and the results have finally come back on the VQ scan and brain MRI I worte about in my last message. I'd love to tell you that all of it is good news, but unfortunately that is not the case...well, some of it's good. I'll start with the good.

As I said, we were able to successfuly move my daily infusions of this new medication from San Diego to the UCI medical Center which is 20 minutes from my house. We met with the doctor we were referred to last week and walked away very happy. He was way cool and seemed to have a different approach on how this medicine should be adminsitered. He believes in giving the body a break from time to time when there a huge amounts of medicine involved...and in my case, that's true. Here is a quick snap shot of what my daily regimine of medication looks like:

Every morning and night I take a handful of pills (15 or so) ranging in different sizes and colors. Every afternoon I take about half that amount...so those are the pills, which doesn't include the pain medication I take on demand for my headaches. In addition to this, I have to do an at home IV infusion of pneumonia medication every morning and night which takes an hour and half each time. I do those at around 9:00 am and pm. The worst part about this medication is that it is the one that hasn't really been working so it's pretty frustrating...but wait, there's more. What is left is the new medication which I have to drive to every day. I get to the hospital at 1pm, sit in a chair for 2 1/2 hours, then head home. Some days I'm lucky enough to need blood which keeps me there even longer. For instance, yesterday I sat in the infusion chair for 7 hours while they gave me two medication infusions and two transfusions of blood. They told me my red blood cells were so low that I should have been crawling into the office, not walking...hence the added time. but it's not only the amount of medication I'm on that made him want to give me a breather, it's also the strength of the new medication. It is almost as damaging to my body as chemo, so pumping it in my body day after day could be a bit much to handle. Anyway, that's a quick look into my medication regimine and why the new doc told me to take the weekend off from the new meds.

I think I got carried away in the details there, sorry about that. So the results came back and they were pretty much what I expected. The brain MRI came back clean as a whistle which is good news. The downside about this is that we still don't know what is causing these non stop headaches. I have learned to deal with them and just power through it, but some answers would have been nice. MRI's on your brain suck by the way. Your head gets crammed in this tiny helmet like area while they run the machine for 20 minutes. If your claustrophobic like me, you'd better be ready for it.

The results of the VQ scan were also what I expected. It looks like there isn't a whole lot of blood flowing around the infection, so this means there is a very good chance that that part of my lung is already dead. This puts the surgical option on the forefront which sucks. One thing I look forward to when I'm past all of this, is getting back into shape and being as active as I was before. Loosing that part of my lung will seriously hamper that. As I wrote on my last message, that area will never regenerate so I loose that lung capacity forever. As bad as that is, I'll take it it if means I can finally move forward with the transplant. They still want to run some more tests. The VO2 Max test still needs to be done as well as some additional pulmonary tests. I can tell you that if I had my way, we would move forward with the surgery now, no matter how invasive it is. The worst part about all of this is spending endless amounts of time in infusion chairs when we could be moving forward with the ultimate solution. Maybe I'm tired of this or just being impatient, bottom line is I want to get on with it so get the knife out and cut away. My guess is more tests/medications aren't going to save my lung.

Yes this sucks, yes this is frustrating, yes I am growing more and more impatient by the day, but it is difficult to complain about my current situation. A few months ago a breathing machine was keeping me alive. I was 50 pounds underweight, I had to take a breath every few words to complete a sentence and I needed two people's help to move from my bed to a chair that was not even a foot away. Today I can go on walks every day with Evey and Floyd, I can go spend time on the beach (not surfing yet) and I can spend valuable time with my family and friends out doing stuff. Sometimes it's easy to focus on the positive things, sometimes it takes some effort, either way, the reality is I've got it ok now and it's just a matter of time before this is all history.

Thanks for reading everyone. Until the next message, take care and be well.

Round 2 - %#@!&

2010-07-08T21:37:00.000-07:00

Well, I wait, and wait, and wait...and still no improvement on my pneumonia. Since my last message to you all, my pneumonia has not only gotten worse, but more legions have grown. There seems to be one large legion (infection) on the lower part of my right lung which my doctors have been keeping a close eye on since I left the hospital. The expectation was that the new medication which I started a month or so ago would slowly eat away at that legion until I was well enough, then we would move forward with the bone marrow transplant. Well, not only has that not happened, but there seem to be a number of smaller legions growing in the same general area as the large one.

As you can imagine, when the results of the pulmonary and cat scan tests came back showing the news I just told you about, there was a bit of alarm with my team of doctors...and then when that "alarm" was communicated to us, Evey and I shared our own silent moments. Immediately in my head, I went to the question I have been trained to ask myself over and over again for the past two years...so what's next. At the end of a long conversation with a cardio thorasic surgeon, we came to the conclusion that there are 3 options in front of us.

1. Change medications and find one that is better suited to fight my specific type of fungal infection. It was my impression that this was already the case, but it wasn't. I guess with this type of infection, it can almost be like a trial and error deal. In the last few days, they have zeroed in on a medication that they are confident will work. The downside of this medication is that it has to be administered in a hospital, not at home like my current one. And because my situation has been handled in San Diego since day 1, and this pneumonia has been so complex to deal with, it can only be administered in San Diego's infusion center...every day. Being that I live in north Orange County, this really sucks. Time, gas consumption and money are taking a big hit when this one starts.

2. Drain the legion which presents it's own problem. If the legion gets drained, there is a very good chance that it could grow again, which means it would have to be drained again. It doesn't sound very good to me to have to go in regularly to have an infection on my lungs drained. We won't know how often that will have to happen, or if it even will happen at all until the first draining.

3. Surgically remove the bottom portion of my right lung, where the infection is. When I first heard this, I figured it would be a simple arthroscopic procedure, but it turns out it's the total opposite. This surgery is very invasive, requiring them to go into my body through my side making a rather large incision, probably having to break my ribs and cutting out the bottom third of my right lung. The problems here are pretty big. There is a chance on the short term side that my body won't be able to handle the surgery given the condition it's currently in. It is definite that on the long term side once the bottom third of my lung is taken, it will never regenerate and that lung capacity will be gone forever. Those are two pretty huge downsides so I'm hoping that is the final option only. By the sounds of it during the meeting, it seemed like the doctor felt the same and only wanted to do this if all other options have been exhausted.

In order to make the best possible decision on how to move forward, a couple more tests have to be done. One is called a Quantitative VQ Scan which will tell us how much blood flow is getting to the infected area. If there is a good amount of blood flow, it means that that part of the lung is still alive and viable. On the other hand, if the blood flow is minimal, it means that that part of the lung is pretty much already dead. This is important when it comes to the surgical option, more specifically the long term ramifications. Obviously, if it's already dead, who cares if I lose that lung capacity because it's already gone.

The next test is called the VO Max...or something like that. This one measures how much oxygen my body creates at the highest level of stress, or at least that's how I understood it. Athletes use this test all the time to see where their max is with respect to endurance. Not sure how it's administered, but it should be interesting.

So that's kind of where things stand right now with regards to my pneumonia. As I've said before, I can't move forward with my transplant until I'm well, and i have to be honest with you, this whole thing is starting to really wear on me. It's been nice being out of the hospital for so long, but at this point, I just want to get on with it and move into the recovery stage. That is the only way I'll be able to eventually get going with my life again. Don't get me wrong, I'm living now and trying make the most of every day, but it is very difficult to sit day after day in this holding pattern when all I really want to do is get back to my life in remission. Some days are better than others, but it takes a mental toll on me on some level every day. I just have to keep reminding myself that things could be a hell of a lot worse than they are and I just have to suck it up and get through it. Sometimes that whole process happens naturally with me and sometimes I have to push myself along. Either way it sucks and i just want to get back in the hospital. I bet you never thought you would see those words roll off of my fingers.

Outside of that, I have a brain MRI scheduled next week for the non-stop headaches I've been having. I had a cat scan done a couple of weeks ago which turned up nothing, and to be honest with you, I expect the same results from this upcoming MRI. Either way, I'll fill you in on how that goes and all of the other tests I have coming up once I get all of the results. It's going to be a big week or two of testing and decision making, so I can only hope that the right decisions are made and I can start to really move forward with getting better. Trust me, that will not only be good for me, it will be great for the people around me. So until then, take care and try to enjoy every day. You'll hear from me soon, hopefully from my hospital bed in the middle of a bone marrow transplant.

Round 2 - %#@!&

2010-06-22T13:30:00.000-07:00

Why does it always seem to be that I get sick when there is a major soccer tournament going on? I'm not complaining, but it's a great coincidence. The first time I was diagnosed with Leukemia, the European Championship was going on. When it comes to soccer tournaments, that would be second to the World Cup. So two years later, my relapse hits after 500 days of remission and the World Cup starts. Luckily for me I'm a huge soccer fan because it's giving me something to do every day. Trust me, when you're idol like I am and your productivity has come to a grinding halt, you need stuff like this to take your mind off of what's going on in the real world. Thanks to the World Cup, I can disconnect for 6-8 hours a day and not have to think about test results, Dr. visits, blood counts, "procedures", whatever...I even sometimes forget about my headaches. You can't argue with the power of sports. Having three teams to root for is a bit tough though. From the beginning I've been pulling for South Africa (Where I was born), Germany and last but not least, the US and A. Need a big day tomorrow to salvage this World Cup. All the marbles are on the table for both Germany and the US. It's going to be quite a day of soccer. Unfortunately, South Africa got knocked out, but they had a great World Cup and totally blew away their expectations. And how sweet was it to see them send the French packing with a loss? Sorry if you like the French team, but they are a huge mess.

So enough of the stuff that has absolutely nothing to do with my current condition. I've been heading down to San Diego once or twice a week. It depends on what's on the calendar as far as tests, labs, etc. Lab results have been solid since I was released but seem to have dipped a bit in the last week or so. My doctor says it's nothing to worry about so I'm not worried, but I'm very interested to see what they show tomorrow. White blood cells are in the 7,800 range which is good, but that number is about 5,000 lower than the prior week. That much of a dip always raises my eye bros, but again, if doc says don't worry, I'm good with that. All of my other counts are well within the "good" range as well, so from a blood work standpoint, no worries.

My energy levels and overall feeling changes from day to day, but my as long as my blood counts are good, I've got to believe that everything behind the curtain is good. I'm not going to lie to you...it sucks when one day you feel great and you've got a ton of energy, then the next day comes around and it's the complete opposite. Don't cry for me yet, when the bad days hit, I can just take it easy, relax and watch the World Cup. Not a bad way to deal with a rough day right? Luckily for me those days are far outnumbered by the good days. It's amazing though, a bad day can make a week of good days a distant memory. The fact still remains that even on my bad days, there are people out there having days that are much worse than mine, and that doesn't only apply to illness. Thinking about that knocks me back into alignment pretty quick.

For those of you who have been wondering what's next, my timeline of events is starting to get a little more clear. I have labs tomorrow which should hopefully show an increase in my WBC count. Then on Friday I'm back down in San Diego for a chest CT scan (Catscan). This is a test I am really looking forward to. It's pretty much the only way my doctors can tell how the Pneumonia is doing. I definitely still have it by the simple fact that I continue to cough up junk all day long. Another thing they can do is listen to my back with the stethascope while I take deep breaths, but it's not even close to as good as the CT scan. So that's on Friday with the results hopefully coming back that same day. I've been on this new medication using an IV which I'm taking specifically for the pneumonia, so I'm really hoping these results come back showing a lot of improvement. It's been a huge hassle for both Evey and Tommy to hook me up with the IV and then 90 minutes later, disconnect it. I can't do it myself so they are the lucky ones who get play Florence Nightingale and take care of me, which they are doing a great job of. I'm a lucky guy for sure. So back to upcoming stuff...a week from Friday I go back down to San Diego for a bone marrow biopsy. This is the one that will either give me the red light or green light for transplant. If I'm still in remission, I get readmitted to the hospital on July 8th, go through four days of light chemo and get my new bone marrow cells on July 15th. That would then become the new Day 0, and the count begins again from there. I'f I'm not still in remission and the leukemia cells decided to show their ugly faces, then it's back to the beginning and they hit me with some sledgehammer type of chemo. I'll leave that where it is for now, but the next couple of weeks are going to be very busy and very heavy. I'm just happy I have my wife, family and friends around me to help me get through it.

All of the above, from a timeline perspective hinge on the fact that they collect my donor's cells on July 14th. Actually, this is a great opportunity to thank all of you who sent him thank you cards. I am not kidding or exaggerating when I say the stack of cards was easily 7 inches high. the response from all of you was unbelieveable, but I shouldn't be surprised by that at all. You all have proven to be the best support system anyone could ever beg for, so when it comes to stuff like this, nothing surprises me anymore. With you all in my corner on the support side, and my donor in my corner for the medical part, I'll be able to get through anything. In fact, just when I thought the donor couldn't kinder or more amazing, I'm proven wrong. I was just told that he had a vacation planned on or around the transplant date. When he was told of the plans with the dates, he moved his vacation to accomodate the procedure. It's just crazy how cool he is. I can't wait to get my butt to Sweden, learn his name and buy him a beer. It may be a while, but if he is good with meeting up, Evey and I are on a plane with whoever else wants to join, and Sweden here we come. I just shake my head in disbelief every time I think about what he has done and sacrificed for me. It literally brings me to tears and I just hope that one day I'll be able to show him how much I appreciate what he has done. This is an amazing person, and once again, I must have an angel on my shoulder because nobody deserves this kind of luck.

I know I have no idea how many of you are out there pulling for me and supporting me, but if I could wrap my arms around you all and pull you in for a big bear hug, I would. And yes, that includes all of my friends out the in the Philippines. Sorry I forgot you guys on my last message but it goes without saying how much a love you all. As you can see, I have a pretty crazy few weeks coming up, but have no doubt that all will go well and you guys will be right there with me either physically or in spirit. We'll get through this and be on the road to transplant and recovery in no time. Thanks for reading everyone and I hope you are smiling that summer is here. Even though I have to be careful with the sun, I still love it and couldn't be happier that we've turned the corner and we're headed right into the sunny months. Take care everyone, enjoy the outside and stay tuned for more updates.

Round 2 - %#@!&

2010-06-05T21:35:00.001-07:00

Hi everyone,

I send this update from the comforts of my own couch with Floyd to my right and a my beautiful Samsung flat screen in front of me. Yeah, you could say that's a far cry from where the last couple months have been spent. I think the last time I wrote I was sitting right here in the same spot just being home for two days recovering from the roller coaster ride of my life. I'm still not completely sure of what happened during those few weeks of pandemonium in the ICU and wherever else I was, but here I sit writing to all of you so something had to have gone right. My doctors tell me my recovery, since the absence of all of the tubes and breathing machines, has been going very well. As I said earlier, I'm still really fuzzy on everything that happened so all I can do is go on what people tell me and what reactions I get when people see me, and from what I can tell, I must have been in a pretty bad place. Kind of scares me when I really think about it, but I guess I scared a lot of people during that time, so fair is fair.

I've been home now for a couple of weeks which when I was released, was told that two weeks would be all I had at home, but due to the severity of the pneumonia I contracted during chemo, my doc now wants to keep me at home until the majority of this subsides. My assignment now is to walk every day, stay active and strengthen up for the transplant which is right around the corner. Don't get me wrong, I'm still clocking some good couch time here in front of the old tv, but Evey, Floyd and I are out just about every morning for a nice walk. Coming from where I was physically, progress comes quickly, but I do feel like I'm getting stronger and putting weight on. I left the hospital about 40 pounds underweight which has been cut in half since my release. I am eating like crazy due to one of the medications I take. It stimulates my appetite which has literally turned me into an eating machine. I've gained a solid 20 pounds in the time I've been out...all ready to shed back off once I go back in for more treatment and transplant. The really scarey thing is that I think when I was at my worst in the hospital and came out of my induced whatever, I think I was down to 130 pounds. I haven't weighed that much since 10th grade. I could only imagine what I must have looked like. No worries though, I'll be back in fighting shape soon enough for them to take it all away once more.

With respect to future plans, I'll be out of the hospital for probably another 4 weeks or so, then it's time for another bone marrow biopsy. The results of that test will determine what comes next, but for arguments sake, let's assume I'm still in remission. If so, there is a good chance we'll skip consolidation chemo and go straight to the stem cell transplant. My donor in Sweden is ready to go so it will take a week of prep, then transplant, then 3 weeks of recovery. At that point it puts me at the end of July and barring any complications or setbacks, I'm back out of the hospital and sent home for recovery. A lot has to happen and fall into place to make all of these assumptions hold tight but I'm feeling pretty damn good about it. Until then, it'sa ll about hanging here at the casa with family, friends and Floyd and working on getting stronger mentally and physically.

The past 3 months have been one hell of a journey, but all I can say is I'm sitting here, still breathing and married to one of the best women anyone could ever hope for. I'm back in remission and my pneumonia is slowly but surely subsiding away. Things could certainly be better in my world, but they could sure as hell be a whole lot worse. All I can do at this point is rely on the support coming in from everywhere, and not just here in the US. I'm talking places like Germany, Croatia, Canada, Puerto Rico, South Africa...and probably someplaces I've missed. It's just unreal to try to try to get my arms around...I can't thank you all enough for the unbelieveable outpouring of love and support. I know it's a huge part of why I'm still here bothering you all...so you do your part and keep it coming and I'll do my part by trying to get stronger and staying positive. More updates to follow as plans get more solid. Take care everyone and be well.

Round 2 - Day @%$#

2010-05-14T12:01:00.000-07:00

Hello everyone, as you can see from the title we have not been through transplant yet but every step we take gets us closer. The latest big step was to release me back home for a couple of weeks. I got out yesterday at about 6 and have been relaxing at home since. It's quite a transition. I had what felt like the best night of sleep ever last night which goes to show how rough those hospital beds can be, especially after 6 weeks.

So with that said, please send all thank you cards to my donor straight here to the house rather than to the hospital. Address is:
1557 Amberleaf
Costa Mesa CA 92626

Its pretty amazing how many thank you's have already come in so please don't slow down. He is going to be shocked when he sees the geneousity of this group of people. I'm amazed just about every morning myself when I see the new cards roll in. It seems neverending and I would love to keep it that way. We just need to have them sent here for the next couple of weeks.

The next peice of big news I have for you is that Evey and I will be moving forward with our marriage on the original date of the 15th of this month. Yep, you do the math and it means we're getting marrried on Saturday, and we can't wait. We decided we're not going to let this sickness control our lives, so we're going to have a small ceremony here at the hospital...and postpone the big reception for when I get better.

SO... thanks for reading and enjoy the weekend.

Round 2 - Day - %&&*!!

2010-05-06T16:56:00.000-07:00

Hi Everyone
Well, I finally got my appetite back (thanks to a wonderful drug called megestrol aka megace) which has been great. I am also able to eat outside food and drinks. I have had a couple of trips to McDonalds and Coco's thanks to my great friends. The food here at the hospital sucks so this is the only way I will get through it.
I got moved back to the 3rd floor yesterday (Weds) which puts me right back to where I started. Just waiting for the pneumonia and lung infection to continue to get weaker at which point everything else falls into place; I will need another bone marrow biopsy to see if I am still in remission then hopefully will get to go home for a short time, then come back for chemo and radiation and then my transplant.
As we move through these steps, we will keep you posted.
Love you all and thank you again for the support. Please keep it coming. Every single thought and prayer goes a long way. Take care, talk soon...

Round 2 - Day - %@!!!

2010-05-02T20:00:00.000-07:00

Hi Everyone- Just want to let you know that I am out of the ICU as of yesterday (Saturday). I don't have any memories of what happened, only what Evey and my family have shared with me. Thank you all for your thoughts and your prayers. The doctors are saying they still cannot figure out the cause of the lung infection. I will be doing more testing next week.
We will catch up with you soon on any more updates.
Thank you to all of you who sent thank you cards. You can still send them if you haven't already. We are just giving them to the bone marrow coordinator as we receive them.
Take care everyone...

Round 2

2010-04-28T11:46:00.000-07:00

Hi Everyone-
Kurt is now in the ICU in critical condition. The doctors are still testing to see what is causing all the fluid in and around his lungs. I will keep everyone posted as the days go by.
Thank you for all the support you have and continue to give him.
Evey

Round 2 - Day - %&*!!

2010-04-25T18:14:00.000-07:00

Hi Everyone-
The past few days have been tough. I had a hard time breathing this past week so they are monitoring my oxygen. Thursday night Evey and I pulled an all nighter since the oxygen machine kept beeping because my oxygen level was going below 90 (which happened a lot). I found out that I couldnt breathe because the liquid around my lungs had gotten worse which was putting pressure on my lungs. They did a procedure Friday morning where the doctors inserted a tube near my ribs to help drain the fluid. It immediatley drained over 2 liters of fluid from around my lungs. They are keeping the tube inside for at least a few days.
The bone marrow results came back and it looked good. There is no evidence of leukemia cells at the moment. There are other studies (chromosome, etc) that take longer to get back. The focus now (or next steps) is to get rid of my pneumonia and lung infection so I can get consolidation chemo to keep me in remission to do the bone marrow transplant.
Thanks again for reading and for all the encouragment you are giving me. Please continue to send the thank you cards for my donor. I know he will appreciate reading them.

Round 2 - Day - %&^*!

2010-04-20T12:07:00.000-07:00

Hi Everyone- sorry it has been awhile since I have written. It has been a really rough couple of weeks battling the pneumonia, pleurisy, fevers, stomach pains, lung infections, and trouble breathing. I finally have good news to report that at Day 27 (Sunday) my white cells finally decided to come back. This means that the doctors will be doing my bone marrow test hopefully at the end of this week to see if the last chemo put me into remission.

On another note, we got news about my donor. Apparently he removed himself from the national bone marrow registry after he donated his stem cells for me a couple years ago. He decided he didn't want to do it again. However, my transplant coordinator called the transplant coordinator in Sweden to have her let the donor know it was for me and he said, "I will do it again for him". This was such incredible news. My marrow coordinator said it would be a very good idea if we could gather thank you cards from my freinds and family for him.

SO... this is where all of you come in. If you would like, please send a thank you card to me for my donor and we will put them together and have my coordinator mail them to him. You can say that you are my friend and appreciate what he has done for me (both in 2008 and now) and whatever else you want to say.

Please mail the thank you card to:

Thornton Hospital 3 West
Kurt Thallmayer Rm 359
Mail Code 7608
9300 Campus Point Drive
La Jolla, CA 92037-1300

Once we receive them, we will put them all together and have them mailed to him. The fact that the guy wasnt going to do it all again and is doing it for me is incredible- and he doesn't even know me! If you are a donor, it is 100% voluntary and this guy is amazing for going through it again for me.

Thanks for reading and for all the comments, they really help... Thanks again for taking the time to mail the thank you card. It means a lot to me that everyone has been so supportive.

Round 2 - Day - %@!!!

2010-04-07T15:10:00.000-07:00

HI Everyone- a lot has happened between last week. I wish I could say it was all good but I can't. Seems that through the ecoli, fevers, food poisoning, stomach pains, etc, I very well could have picked up pneumonia. In fact, I do now have pneumonia and pleurisy. It is unfortunatley the kind that is pretty painful so anything that has to do with headaches or my other pain has now shifted to my lungs and diaphragm which is where my pneumonia lies.
All it takes is a simple shift, movement, breathing, walking, coughing, practically anything sets off a mountain of pain. I have been battling this pain, high fevers, and complete loss of all my taste buds since last week.
Unfortunatley, the only thing that can really treat my pneumonia is my white blood cells and they do not exist due to the chemo that I finished. I am now on all kinds of anti-fungal, anti-biotic, and basically the strongest drugs they make. The doctors are saying my white cells should come up after Day 21 and today is Day 15 (from my chemo treatment). The fact that I have no taste buds has made it quite difficult to eat. My hair is also starting to fall out so I had Tommy give me a nice buzz cut today.
Thanks again for checking in. I know you guys have a lot going on in your own lives. Its a really good feeling knowing that there are people out there that are thinking about me.

Round 2 - Day @%$#

2010-03-31T17:56:00.000-07:00

So first off let me aplologize for the spotty communication at best, since this took a turn for the worst. I'll be honest with you, the last thing on my mind is jumping on a computer and opening myself up, so please don't expect that here. Although this probably won't hit your epxectations, I will commit to you that it will get better going forward.

So for the facts, Costa Rica for 10 days for my bachelor party starting March 17th returning on March 27th with my best freinds in the world plus or minus a few. Stopped and had lunch at a place I ususally go to once I get into the country. From that point on the misery set in and my trip was over. Although I was able to get out a few more day and night trips here and there and muscle up a few good times, most of the time was spent writhing around in pain and misery on the bed underneath the fan.

As things progressiveily got worse with my condition, the conversation moved from calling an ambulence, to driving me straight to the airport, to have a helicopter come pick me up with a doctor on board, to having an ambulence pick me up and take me to the hospital myself. As I said, it all worked out when we bypassed all of it and drove straight to the airport.

At this point the CR part of the trip was over and we were scheduded to fly out the following morning. The expereience in the hospital was a story in and of itself with highlights of me yelling at the top of my lungs to quiet the F up and let the patients sleep. It all turned out fine when it came time for the bill and they had no mechanism to get that handled so they told us not to pay.

I felt fine the next morning and we were out of there. Well, in feeling bad for my friends about how the trip had gone, I brought up the idea to stay for a couple of days in Miami (our layover)and it was well recieved so I guess we decided stay. All of theses stories will come out in passiing but I'll leave it up to your imaginzation. We had one of the most incredible dinners ever on Sunday night. Absolutely amamzing.

So, here I sit back in the hospital with the news that nobody wants to ever hear. "I'm really sorry to be the one who had to tell you this, but your cancer is no longer in remission and has now relapsed".

The next steps are prettty simple. I just finished 5 days of chemo which supposedly has a very good and successfull response rate to cancer. In the middle of next week, they will run another bone marrow extraction (assuming my counts start to go up again) and see if I am in remission again. If I'm in remission, we go for a match and move on to next steps, if I am still in relapse, we mix up the cocktail mix of chemo again and go from there. That's the nitty gritty guys, take care everyone and thank you so much for the unreal support I'm keeping you all close to my heart. Thanks for everything again and we'll get through this together.

Round 2 - Day - %@&

2010-03-29T15:54:00.000-07:00

Hi Everyone and again let me apologize for waiting so long between these messages. So, as far as this one goes, it started in Costa Rica at my bachelor party which consisted of seven of my closest friends. A half an hour into the trip, I ate something which immediately didn't sit right with me and I spent the rest of the trip fighting it off. It turned out to be ecoli. After a worthy attempt of planes, trains, and automobiles to get to a nearby hospital, we settled on a car. I spent the night in a Costa Rican hospital. As it turns out, Costa Rica had nothing to do with the ecoli or my current state. I flew home and went to the hospital in San Diego on Friday, March 19th due to high fevers, stomach pain, and head pain. They did test after test after test and found bacteria in my blood and appendicitis. I spent the weekend in the hospital and got another bone marrow test on Monday to test for Cancer. We got the terrible news the next morning that my Cancer had returned. Due to the Cancer and the need to start chemo right away, they opted not to remove my appendix. I started chemo Wednesday for 5 days and ended yesterday. I am still having sporadic stomach and head pain but they are giving me dilaudid which helps. Now that chemo is done, my white counts are zero (which means I have no immune system) so we wait for my counts to go back up again and do more chemo and when I go into remission, they will do another bone marrow transplant. I did get great news this morning that my original donor is willing to donate again so the doctors are getting that lined up so they are ready when I am. This guy is seriouisly a saint a of manitidues I have never even had visibility to. Any time I think I'm a good dude, I just have to lie there and get a glimpse into this guys heart. Pretty amazing...
Thanks for reading...

Day + 411, Part 2

2009-12-09T01:08:00.000-08:00

Sorry, forgot to update how I've been feeling. For the most part, feeling well and doing better. as I said in my last message, my energy levels seem to lower then they were before I got sick, but I think if I put some real effort into getting back into exercise, those energy levels should go back up. My good days are far outweighing the bad which is how I guage how I'm doing, so, things are good. I still have a long way to go and I'm hoping my new exercise regimine will help that along, but even without that, I'm feeling better. Now move on and read the next marathon message...

Day + 411

2009-12-09T00:45:00.000-08:00

Full circle. That would the best way I can describe how I am feeling right now. I guess I should start by saying I am sorry for being gone for so long. I guess the only thing I can say about that is there hasn’t been much to share. I know, a poor excuse for laziness, but there is some truth in that. The extent of my news has been limited to doctor visits and medication changes, but again, I’m sorry for not checking in for so long. I will try to stay on top of this as news comes, but as I said, news has been pretty boring as of late.

So back to my full circle comment. As I sit here and type, I am looking out from my hotel room in the Philippines. This is sight that 18 months ago, I was convinced I would never see again. I have vivid memories of lying in my hospital bed and thinking to myself without a doubt that I would never travel again. In fact, I had myself convinced that I would never travel on a plane again, both domestically and internationally. Some of this was brought on by the fact that my Leukemia was very aggressive and took high dose chemo to get me in remission and also from just listening to my doctors and nurses. Its funny too, because at the time, I remember being ok with it. My priority at the time was obviously all about getting well and beating the cancer, so everything else kind of took a back seat, but I remember seeing places on tv and in magazines and thinking to myself, my god, I’m never going to be able to travel again. The doctors were doing their job by not getting my hopes up which I think is good.

It’s funny because my life has now become a series of milestones. It started off by getting to leave my room to walk outside in the courtyard at the hospital. It then went to getting discharged and eating non hospital food at our place in San Diego. Then it was being able to leave the immediate vicinity of the hospital and take a road trip to Santa Barbara. Going back to work full time was a huge milestone for me and much needed for my sanity. Then going surfing for the first time (which was very unsuccessful) was a big step mentally. I say unsuccessful because I went from surfing big perfect waves all over the world to not even being able to stand up on small San Clemente slop…oh well, gotta learn all over again I guess. Anyway, back to the milestones. The next big one was being able to get on a plane and travel domestically. I went back to Buffalo for work and have done so many times since. And to round out the milestone process, I am now in a foreign non-Western country where you could argue sanitary conditions are not necessarily hospital like. I absolutely love the Philippines and it’s only fitting that this is the place I put my first international foot on the ground post cancer.

It hasn’t been without it’s emotions, even though I only landed 16 hours ago. As I got off the plane I could smell the distinctive Philippines smell which instantly brought a huge smile to my face that I couldn’t get rid of for many minutes. Walking through the lobby of the hotel I always stay at brought back a rush of memories which all came to a head this morning at the gym. I really haven’t exercised at all since I started my recovery. I was telling a friend of mine today at lunch that I’m not sure if that’s because I really am fatigued and tired from the cancer, or if it’s just because I’ve grown lazy and use my sickness as an excuse. Regardless, I exercised this morning for the first time since I can remember and it felt great. I just about killed myself, but as I said it felt great. It wasn’t until I took a seat to rest outside by the pool that things started to hit me. I don’t want to get too deep into it, but what was a relaxing post workout rest, turned into a crazy mix of emotions centered on where I am today compared to where I was the last time I was here.

It’s easy to sit here and say the cancer came, I’m in remission and things are now getting back on track through recovery. The reality is, it’s impossible to not think of what has been lost during that process. These are the things you have to get through on your own. Sometimes they barely hit you, and sometimes they hit you like a sledge hammer. For some reason, today was a sledge hammer. It’s a tough pill to swallow when you’re sitting the utterly exhausted from the tiny workout you just finished, and you start to remember that the last time you were here. A time when I was traveling all of the country, surfing some of the best waves I’ve ever surfed, ocean swimming when I was bored, running or working out every day I wasn’t in the water, and no doubt in the best physical shape of my life. Sitting there in that chair, the reality of what has been lost hit hard. I guess my point is, there is whole other side of recovery from cancer that is beyond medicine and blood counts, and my experience so far is that it is more difficult. It’s a daily battle to not think of the things lost and focus on the fact that I’m alive, but there is a thing called human nature which you can’t escape. Just like the chemo treatments and everything else you go through in the hospital, it’s all how you deal with it. I'm pretty sure I'm doing alright with it, but I do have my moments.

So here I sit, come around full circle cancer free and back in the Philippines. I’m not sure how many more milestones are out there, but I look forward to them. As of now I think I’ve hit them all, but I’m sure there will be some eye openers along the way where I’ll be surprised I’m doing something.

I do have some news to share. I had another bone marrow biopsy done about 6 weeks ago and the results came back squeaky clean. I have now been in remission for over one year with 4 more to go before I can get comfortable. So all is good on the recovery front and the fact alone that my doctor gave me the green light to travel here, means everything. All I am going to do is keep doing what my doctors say, try to keep my head in the right place and be as good as possible to the people around me. Pretty simple huh? We’ll see. I hope you all have a Merry Christmas and happy holidays. Evey and I just bought our first tree together and I can’t wait to get home to it. Take care and be well everyone.

Day + 297

2009-08-16T22:16:00.000-07:00

Hi everyone, long time no talk. Look at that, close to 300 days since my transplant. It's been a while since my last message and I apologize for that. As you saw then, there has been a lot going on, and it really hasn’t slowed down. I didn’t realize that once we bought this house, I’d be at Home Depot just about every day, sometimes twice a day. Not to say we have a lot of repairs to do, but you find things all over the place that you want to change to your taste. It’s been busy but it’s also been fun. Quite honestly, getting the house together and working full time has really kept me busier than I’ve been in over a year. It’s nice to be busy, but there are times where I just want to lay on the couch and read or watch tv.

So…my health. I’d love to tell you that with time things have progressively grown better and better, but that just isn’t the case. I seem to be in a long holding pattern with my health, where I just can’t get over that "feel good" hump that’s in front of me. Difficult to explain but I think you get it. I still have good days here and there, but my expectation was that by now, those good days would be increasing with the tough ones falling by the wayside. That hasn’t been the situation. In fact, over the past few weeks my tough days have become more prevalent than they have been in the past. Headaches are not going away and that overall awful feeling that I’ve described in the past has lingered on for multiple days rather than just a day here or a day there. To add to it, my muscles, joints and tendons are for whatever reason extremely tight and painful when I wake up in the morning, so just getting up and rolling out of bed is not an option. I could honestly type for hours about what this is doing to me both physically and mentally, but I’ll simply say it’s exhausting.

Some good news is that my counts continue to be right where my doctors want them to be so my medications are decreasing. In fact things are going so well on that front, that I was just recently cleared to travel domestically. This was huge news for me because it tells me that no matter how bad I’m feeling or how tough the times are I’m going through right now, my doctors see my overall health progressively getting better which means I’m getting closer and closer to being able to live a normal life. A life I seriously can’t remember. I honestly couldn’t imagine being able to jump in my car with my surfboard and head down to the beach…sitting on the sand with my shirt off enjoying the sun. paddling out and enjoying the ocean. Those times are so foreign to me right now that it is almost like a dream, but taking the step like being able to get on a plane gets me that much closer. I actually did jump in the ocean during the US Open in HB a couple of weeks ago and it was amazing. I can’t wait to get out on a board if you can’t tell. The next steps for me would be international travel, then being able to swim in a pool and then the ultimate…the ocean. I see those days getting closer and that’s what keeps me smiling. That is going to be one hell of a day.

I'm not going to lie or try to paint a rosey picture. Things are tough right now and I've been broken down at times, but there are also some very bright spots. Work is going well, I have the girl of my dreams on my arm, I live in what I consider paradise and I have the best dog anyone could ask for. Even on a bad day I have to smile at that. Thanks again for all of the support. I know I say this a million times and even that’s not enough. I can’t put into words what you all mean to me and what you have done to contribute to where I am now. See you all at Angel Stadium for the Light the Light walk next weekend. Otherwise, take care and be well.

Day + 251

2009-07-01T22:44:00.000-07:00

So it's been quite some time since my last posting and I apologize for that. I must say it has been a busy few weeks, that's for sure. Much busier than it has been for me since this time last year. I've been living in the middle of 4 part hurricane. Moving home from San Diego to Costa Mesa, planning a wedding, going back to work full time and the cherry on the cake...moving into our new house from Costa Mesa to Costa Mesa. For the latter we bit the bullet and actually hired movers for the job. We just couldn't take it anymore. So as you can tell, busy is an understatement. All good stuff though. I just can't wait to be nice and settled in our new place. We absolutely love it, as does Floyd. So enough about that.

Since my last posting, I've been feeling well but have found myself on a roller coaster of fatigue. I haven't been exercising much because of everything going on, but I still find myself getting really tired at times. There are a few times a week where I will find myself literally falling asleep where I sit. This is usually around 6 or 7 at night, so I have to do my best to stay awake. If succumb to the dreaded evening nap, there is no way I'll get to sleep later that night. There are even times where I'll be out to dinner and falling asleep at the table. It just hits me out of the blue and down I go. I'll be honest with you though, I'll take that any day over the bouts of nausea or just the overall awful feeling days I used to have. Those days are the worst and luckily they seem to be down to just a couple of days a week as opposed to the typical 5 days a week. Those are the days that just tear you down physically, mentally and emotionally and also affect the people close to me. Cancer is a very contagious disease. Contagious from the standpoint that other people aren't getting what I have, but they are still feeling the pains of what I'm going through. All I can do is apologize to those loved ones, family and friends. After a year you'd be surprised at how worn down this makes you.

Speaking of which, I hit my 1 year diagnosis anniversary a couple of weeks ago and it came and went with very little recognition. The day before I was thinking to myself that it was a pretty significant day in my life, but when it actually came, I didn't thing about it once. In fact, it was only a couple of days later when I realized that it had already come and gone. I think that's a good thing though. I take that as me moving on with my life with other things growing in importance, while, cancer takes a back. What a year it has been.

Work has been great. It has been a little more difficult then I thought to get back into the proactive mode which is what a lot of what my job entails, but it is starting to come back. Not like riding a bike, but I definitely feel myself getting back in the groove. Working from home and slowly easing back into normalcy has been going very well. I actually feel more productive at home then I do in the office. Never thought that would be the case. Regardless, it has been a great boost for me both mentally and physically. Just keeping my mind off of cancer and feeling bad does wonders for the old noggin. Once again, I can't thank Keith and Rich enough for their flexibility in this whole situation.

US had a hell of a shot at shocking the world in the Confederations Cup, but just fell short to the mighty Brazil after going up 2-0 at the half. But they are just too damn good and put 3 on us in the second half to win it yet again. With all that said, hats off to the US team for taking down Egypt, Spain and putting together a great half against Brazil. Can't wait for the world cup.
Labs have been consistently good with my white cell count right where it needs to be. Docs are loving that which brings me closer and closer to being able to travel again. That will be the point where for me, things are back to as normal as they ever will be. Hopefully that means I can travel domestically in the next couple of months and internationally by the end of the year. Fingers are crossed.

Well that should just about bring you up to speed. Thanks again for reading and for the never ending and seemingly bottomless support. You are all amazing in so many way and I can't express what that does for me. Please take care of yourselves and have a great time celebrating our nations birthday this weekend. 3 day weekend...yeah baby. I haven't celebrated having a day off in quite some time and it feels pretty damn good.

Day + 221

2009-06-01T23:48:00.000-07:00

So here I sit over 220 days since my transplant, and it's just amazing to look back and reflect on the road so far. So much has happened since then, and even more since this all started close to a year ago. Chapters that were opened are now being closed, and its happening quickly. It started with us moving out of the beach house in San Diego a few weeks ago, followed by us moving back into Evey's place in Costa Mesa...and it continued today with me going back to work full time. I'll be honest with you, I have had my thoughts, more like doubts about going back so early. They have been swirling in my head over the past few weeks, but after today I know it was the right call. No doubt I will have some difficult days to get through in the upcoming weeks and months, but life would be too easy without difficult days. I am just really lucky that I work for a company that places value on it's associates well being, and I have seen and experienced that personally from the top of the org chart on down. I can't speak enough about how supportive, flexible and understanding everyone has been and it really has had a lot to do with my recovery. Not having to worry about your job or messing up your career while going through something like this just makes the whole situation that much easier to get through, and that is why I have been able to go back to work within a year of coming down with this illness. Rich, Keith, Chris and everyone else, thank you!

From a risk perspective, I'll be ok. I am going to slowly ease into it by working from home for the first couple of months. I'll be going in for meetings, presentations and things like that, but for the most part I'll be working from the house. These were the stipulations laid out by my doctors to avoid any unnecessary risk to my immune system while it still is building back up to normal strength. The office environment can be a petrie dish of bacteria and infection which your immune systems can usually fight off. Mine wouldn't stand a chance if truly tested...so until then I'll be keeping my distance. It's too bad because it was really cool being back in the office today. A lot of you might think being out of work for a year would be a great thing, but I can tell you from experience it isn't. Cashing checks with the statue of liberty on them and not feeling like you’re contributing to anything gets very old very quickly. I know, I know, I have had my hands full fighting off the cancer, but that doesn't take away from the empty feeling you get by not working. It eats away at you after a while. These are the thoughts I've been contending with over the past couple of weeks. One thing I didn't want to do was rush back to work because I was bored, but getting the green light from my doctors and being able to slowly adjust back in was reason enough to pull the trigger and close the "Leave of Absence" chapter of this story. And I must tell you it feels pretty damn good. I'm really looking forward to becoming a normal contributing citizen once again.

On the medical side of things all is good. My counts continue to stay within the very good range, which is where they have been for the last month or so. The really good news is that I have been feeling good along with that. I have had a couple of days here and there where things haven't been so good and life has been tough, but for the most part I have been feeling great and slowly feel like I'm getting back to my old self. I unfortunately have a pigment thing working on my face where it looks like I have a sun burn. This is really just a side effect of the medications I'm on in conjunction with the bout of rejection I went through a couple of months ago, but to be honest with you, I could care less. I'll take feeling well and having good counts all day long if means I have to cruise around with a seemingly sun burnt face. After you've gone through things like body changes, weight fluctuations, hair loss, skin rashes, etc, having a bit of a red face is laughable. One of the many lessons I will take away from this whole experience will certainly be how unimportant the physical appearance is compared to that person’s character. Through the amazing actions I witnessed from the people who supported me through all of this, I could see the true beauty of what's inside and conversly how unimportant the outside is. Ok starting to ramble, somebody please push me off the soapbox.

Now comes of course the Light the Night plug. I hope to see you all there because it is going to be quite an event. Here is the link once again for those of you looking to get more information or donate or both. http://pages.lightthenight.org/ocie/OrangeCo09/Floyd1

Thanks for reading everyone and take care of yourselves. Until next time...

Day + 201

2009-05-12T00:47:00.000-07:00

***PLEASE READ THIS ENTIRE MESSAGE***

Hi everyone, I have an exciting announcement to share with you. The annual Light the Night Walk at Angel Stadium is coming up again on August 22nd. The date this year is a little different from last so please make a note of it. But what I am very excited about is that this year we will be honoring one our best friends, Van Skoglund who passed away unexpectedly earlier this year. He captained our team the last time around and did an outstanding job, so we feel there is no better way to honor Van and carry on his hard work than to walk in his name.

I know from time to time I forward charitable opportunities to you guys and they are all for worthy causes. The idea has always been to throw it out to you all and let you decide what you want to do with it. This charity on the other hand is really the mothership of all blood cancer charities so if you are inclined to donate, this is a great place to do it. We are looking to get a bigger group together this year than last so as always everyone is invited. Topping last year is going to be tough but we can do it. If you were there then you know how great of a time it was and there is no doubt this year won’t be the same, but we can’t do it without you. Let’s do our best to make this a huge success. Below is a message from Cindy Skoglund, Van’s Mom who is going to captain this year’s walk, as well as a couple of easy links to either register as a team member or simply donate.

To register for 'Van's Walking Warriors', go to:
http://pages.lightthenight.org/ocie/OrangeCo09/VansWalkingWarriors

To enter and make a donation, go to:
http://pages.lightthenight.org/ocie/OrangeCo09/Floyd1

Cindy’s message:

Please join 'Van’s Walking Warriors' as we gather in support of our good friend, Kurt Thallmayer, and this very worthy fundraiser - Leukemia & Lymphoma Society Light the Night at Angel Stadium in Anaheim on Saturday, August 22, 2009.

We will walk as Van’s Warriors against Leukemia and Lymphoma and in honor of Van for the work he did for this very worthy group and the love he gave to all of us. As your team captain and Van’s mother, I am honored to lead our team.

So add this important date to your calendar and join us for some FUN as Van would want. There will be memories made this day as we honor my son, his best friend – Kurt Thallmayer and his family – and the Leukemia & Lymphoma Society as we seek donations to support the research being done against these dreadful diseases.

Plan to come early for food, fun, drinks and more fun! Additional information will be out soon....so pass the word and invite your family and friends and their family and friends, etc.

Thanks and I look forward to seeing you at Angel Stadium on Saturday, August 22, 2009.

Cynthia Skoglund
Manager, Investor Relations
Beckman Coulter, Inc.
714/773-8213
Cell 714/305-7962

Day + 199

2009-05-10T10:11:00.000-07:00

Happy Mother's Day Mom, Sonia, Josie, Paulina, Trina and anyone else I may have missed. Can't wait to get over to the Phoenix Club and celebrate in style.

Well I can't say a whole lot has happened since my last message except more soreness from my push back into the world of exercise. This time I decided it was time to get back out on the open road and take Floyd on the running trail I used to do before I got sick. It was an odd feeling knowing that I hadn't done that since my diagnosis. Those are the things you don't think will really resonate but they do. Just sitting there putting my running shoes back on, Floyd in one hand and iPod in the other and running in the open air again...I don't know, it just gave me a very weird feeling. You try not to think about it very often, but it's the little things like that that make you realize you lost a full year of your life to this illness. It's actually not fair to say lost because believe it or not, some very good things have come out of this, so lost probably isn't the right word, but I think you get the picture. Anyway, it was an unbelievable run with Floyd and again, I paid for it dearly for days. In fact I was hoping to try to get out again this morning for run number 2, but no can do. Floyd will have to settle for a walk. I'm still way too sore.

On the medical side of things my counts actually got better week over week which says a lot because my counts last week were the best they have been since this started. I can only hope that things continue to trend this way. My immune system is the strongest it has been since diagnosis and my hematocrit is slowly rising to the point where I am approaching the norm. I couldn't be happier with this as well as my doctors. I can't say that has translated over to how I actually feel, but I'd rather feel bad and have great counts than feel good and have my counts in the toilet. Mornings are definitely the worst to deal with then I can only hope things get better from there. Sometimes they do and sometimes I'm stuck with it all day. Those are the days that really get to me mentally, but that's when I have to try my hardest to stay on point and remember that things could be a hell of a lot worse in my world. I try to keep the mortality thoughts out of my mind as much as possible, but every now and then I have to remind myself that there are people dying every day from this disease, and I am one of the blessed, lucky, fortunate, whatever you want to call it, ones who has been given a second chance. You'd think that is enough to pull yourself out of it. Sometimes yes, sometimes no, but the bottom line is I am here, living, breathing and most of the time smiling...and things ARE getting better.

That's about it for today. If you guys have any time, check out the link below. It will take you to a team in training website where people are doing 200 mile + bike rides for the sake of finding a cure for blood diseases like mine. Pretty amazing stuff. Any help or support you can throw their way would be really appreciated by everyone involved.

Take care everyone and again, happy Mother's Day to all of you mothers out there.

http://pages.teamintraining.org/sf/ambbr09/jmagee

Day + 195

2009-05-05T01:31:00.000-07:00

And yet another week passes on this unreal, surreal, crazy, whatever you want to call it road, but the good news is it wasn’t that bad of a week. Given everything that has transpired over the last few weeks, I’m happy to say I didn’t get hit nearly as bad as expected by my new round of meds. The steroids on the other hand have taken a bit of a toll on me. Sleep is something I really enjoy which has been severely hampered over the past 10 days. Luckily I’ve got a bottle of Melatonin to help me through that which is a phenomenal natural pill which actually works. I’ve always been of the opinion that natural remedies are hocus pocus but after this I’m on board, especially given the fact that they are granting me precious hours of sleep. So that’s the sleep side of the coin. The flip side of that coin is how these meds have affected my moods and behavior. It’s funny, in an egotistical sort of way, I've always thought that there was no way a pill could affect my mental state, but it can…and it did, just ask Evey. Like the poor girl hasn’t already been through enough this year with having to live in a hospital fold out chair for 6 months, relocate to San Diego in a moments notice, rejuggle her work life, sacrifice family and friends time, the list goes on and on. You can now add having to navigate through my mood swings on top of all of that. Luckily they haven’t been all that bad, but there have been a few and those have been very difficult to control. Most of the time I can feel it sweeping over me and make a quick mental course correction to get through it, but as I said, a couple got a way from me. If the slow breathing, trying to talk myself out of it, rationalizing that this is only a pill, yada yada yada doesn’t work, I have to simply try my absolute hardest to keep a level head and get through it. I honestly don’t know what’s worse, having to actually deal with the sporadic physical pain I get hit with now and then, or the mental pain knowing I’m being a total jerk to the one person I should be treating with the most love, respect and affection. I can only hope that even my minimal frequency of these episodes goes down quickly and things can get back to normal…or whatever normal is.

On another note, I had a great week from an exercise standpoint. Stepped foot in the gym for the first time in a year and it felt great. I had to be very careful about what I touched and what I used, but it was a great workout. I ran for a mile on the treadmill and then was able to squeeze in about 15 minutes of weights which just felt amazing. It left me with a feeling I hadn’t felt in quite some time and quite honestly missed much more than I thought. I’m really looking forward to getting back in there. The next day I went on a 2 ½ hour hike through the hills off of Ortega Hwy with Evey and my family which just about killed me, but again, loved every minute of it. To close out the exercise trifecta, I took part in a 5k walk on Sunday morning for the Pediatric Cancer Research Foundation. As odd as it sounds, I felt alright that day. I figured I would start to feel it by then, but I didn’t. I felt great but definitely needed the rest of the day to relax and recover. Now Monday on the other hand…that is a different story. I woke up Monday morning and could barley walk. From my hips down to my toes, utter pain and agony throughout, but it’s the good pain and agony. The kind that says you had a hell of a workout but now it’s time to chill. These three days of exercise gave me a great taste of what life used to be. One that I had forgotten completely but don’t intend on forgetting again. It’s a great step for me mentally knowing that the time is right and I can start the process of taking back the valuable pieces of my life that were stripped away this time last year. I can’t wait to get going, and yes, moderation is my best friend.

On the blood counts front, things couldn’t be better. In fact they are the best they have been since my diagnosis. My white blood cell count jumped back up to 7.6 which is right where it needs to be to maintain a strong immune system My hemoglobin is sitting at 13.8 which is the highest it has been in a while and my hematocrit is at 41.8. I haven’t been over 40 since I was diagnosed so it is great to see those numbers. Hematocrit is a good way to measure my potential for endurance, so given those three days of exercise, timing really couldn’t be better. Hopefully it turns into a trend and not just a one week spike. Time will tell.

That’s about all I have. There is a lot going on, some positive and some not so positive, but for the most part things are good. I’ve got the best fiancé, family and friends anyone could ever ask for. Once you know that, it gets that much easier. As always, take care, thanks for reading and we'll catch up again soon.

Day + 182

2009-04-22T15:28:00.000-07:00

So I guess all good things must come to an end, especially when you’re dealing with cancer. Yes, things were going very well and everything was looking up. Counts were good, I felt like I was getting stronger and my doctors were peeling back my immuno-suppressive meds which are all very good signs. Well it’s like they say, for every two steps forward you’re probably going to have to take one step back. What the hell am I talking about you ask? Well, that pesky little sun irritation on my skin reared it’s ugly head and turned into a major problem over the course of one week. It has taken the shape of full blown rejection which needs to be aggressively taken care of now. That means my immuno-suppression drugs go back up to original levels, in addition to adding another one that I’ve never been on before. It also means that I have to start taking a crazy ass steroid pill. As a result of the steroid, I have to go back onto another drug I was completely taken off of over two months ago. So the end result is that I am on more medication now than I was when I first exited the hospital, with a page long list of side effects that go along with them. Side effects that destroy my immune system, totally mess with my moods, play with my blood sugar levels and last but not least, make it impossible to get a good night’s sleep without adding more medication, which I have yet to do. And if that’s not enough, it is throwing my blood counts all out whack so I can’t even get a good reading of what’s going on there. So as you can see, life is good.

Now I know I’m going to get through this and that all of this stuff is just another step I have to take on the road to a full recovery from this disease, but I’ll tell you, this is a massive step backwards and is a tough pill to swallow…no pun intended. It’s a strong punch in the stomach to have to take something like this. The good news is I’ll finally get rid of this skin irritation which literally spread all over my body. The bad news is all the stuff written above that has to go along with that. The bottom line is this degree of rejection cannot be messed around with so what has to be done will be done.

Once again, thank you guys for every ounce of support you have thrown and continue to throw my way. There are times where I unbelievably feel like I’m alone through all of this. And I say unbelievably because with everything I get from Evey, my family, my friends, etc., alone is the furthest thing I should be feeling. I don’t know what’s happening with me mentally, but it seems as though the further along I get through this, the more vulnerable I feel, and that is totally counterintuitive when you think that the further along I get through this, the closer I am getting to recovery. It’s all just getting more and more weird in my world which is sometimes cool, but other times…not so much. Who am I kidding, I wouldn’t wish this upon my worst enemy. Even still with all of that said, I’m out of the hospital at home with my fiancé, my family, my friends and my dog. Those are the only things necessary that should keep a man smiling…so I’m still smiling. My weight is where it should be, I can walk my dog every day and I can eat just about anything I want (though that is changing). It's been 182 days since that Swedish angel on my shoulder generously donated his stem cells and all is going relatively well. Life really isn’t all that bad, I just need to get through this, and I will.

That’s about it for now. Take care of yourselves and we’ll check in again soon with hopefully solid progress to report on. Not hopefully, definitely! Later on guys.

Day + 174

2009-04-14T08:11:00.000-07:00

Good morning everyone. I usually write these late at night so it's kind of weird saying that. I guess I'll start by saying I'm happy I was able to give you all a nice laugh. It seems you all enjoy hearing about me wallowing in pain and misery. I know, I know, I brought that all upon myself, but how about a little sympathy for the kid. Of course I'm joking. I think I got the biggest laugh of all out of that situation. And trust me, even laughing soon turned into crying due to the extreme pain I was in. Anyhow, I'm glad you were all entertained by that. I can't say I did anything like that during this period so my muscles have been nice and normal.

Things have been good, but I have been battling an outbreak on my skin which is a reaction to the sun caused by my medication and the chemo I went through. Luckily these aren't abrasions or anything like that, it basically shows up as redness, but it's all over my stomach, chest, back, shoulders and face. It is a little bit itchy but luckily very manageable. My doctors took a skin biopsy out of my back last week to make sure it is GVHD (Graft vs. Host Disease) which is a technical term for rejection. Yes it is rejection, but it is nothing to be too concerned about. Of course if I don't do anything about it, it can spread and get worse, but I am treating it regularly with a strong cream so it should be gone in no time. It's been here for a couple of weeks so I'm hoping the end is near. We shall see.

As I said above, things have been good but I still have some bad days mixed in every now and then. As I get further and further away from my transplant date, it gets more and more frustrating for me to have these bad days. I know they are a part of the process and I just have to deal with them and hope they become more and more infrequent. With that said, my medication has a lot to do with how frequent those bad days are and unfortunately, with this skin situation going on, some of my medications have been increased. This will hopefully be short term and I'll be on the road to lowering my meds again in no time.

As far as my counts go, they dropped a bit last week which goes hand in hand with the GVHD I'm experiencing. My white blood cells dropped from 5 to 4.2 with my platelets following suit going from 191 to 157. My red blood cells counts and hematocrit stayed in the same range of 12 and 36 respectively. I fully expect to have these counts go back to normal as I fix this GVHD problem.

Well my friends, it's another beautiful day in sunny so cal so make sure you get out there at some point today and enjoy it. You owe it to yourself. Take care everyone and make sure you either start smiling or keep smiling. We'll catch up again soon.

Day + 161

2009-04-02T22:36:00.000-07:00

Hi everyone-

once again, I'll start by saying thank you all for your messages of support. I can't get enough of them. So it was a rough couple of weeks that I wrote about in my last posting, but I'm happy to say that those days went away soon after that time and it has been smooth sailing since then. I have had a couple of tough days sprinkled in there which will always be the case, but this has been a good stretch of pain free days. Well, that's not all together true. Right now I am more sore then I have ever been in my entire life...and I mean from head to toe sore. So bad that I got out of bed this morning at 11:30am after waking up at 7:30am. Not because I wanted to lay in bed for four hours, but because I seriously couldn't physically get up. I was laughing at myself because I was in so much pain.

Now hold your sympathy because it has nothing to do with my Leukemia. For the first time in over a year I went and played 18 holes of golf with a couple of old friends. I figured I'd be sore, but had no idea it would be anything like this. I guess when you swing the club 118 times with muscles you haven't used in close to a year, you're asking for trouble. Yes, 118 times. To add on to my stupidity, I thought it would be a good idea to do some push ups later that night. That turned out to be a horrible idea because it just added on to the pain in my upper body. It is seriously even difficult for me to sit here a type this message right now. Not even kidding when I say this is by far the most muscle pain I have ever experienced. All I can do is laugh and be happy with the fact that I was able to get through a full round of golf. I'm really looking forward to getting out there again even though I stunk up the place.

From a medical perspective things still remain on track and couldn’t be better. My white blood cells are at 5.0 with my hematecrit jumping up a bit to 36.7 which interestingly enough shows what my endurance should be. Right now I’m at about 70% of my total endurance which is up a bit. My ANC is at 2.6 which is still good but a little lower than I like. ANC shows how susceptible I am to infection. It takes a little more into consideration than just straight white blood cells. On top of all that, my doctor continues to cut back on my immuno suppression medication which is a great sign. Those are the anti rejection drugs so that just tells me my doctors are feeling really good about the fact that my donors stem cells are going to stick with little or no fight from my body.

So it’s all good news my friends. Thank you again for staying up on my road to recovery. As you can see things couldn’t be better on the medical side…the important side, and I am feeling great, aside from my excruciating muscle pain, but again all I can do is laugh about that. Please take good care of yourselves and we’ll catch up soon.

Day + 150

2009-03-23T00:05:00.000-07:00

Man, I just can't tell you how stoked (happy) I get in reading the messages back to me. It’s pretty unreal for me to see how my experience has impacted so many people’s lives. I'll leave it at that but thank you all very much again.

So believe it or not, it’s been 150 days since that unbelievably generous man from Sweden, the angel on my shoulder, hooked me up with his stem cells. I just got my chymerism test results back today and all is still good, which means if you look at a full sample of my bone marrow, 100% of it is made up of my donor's marrow...and that is exactly what we want. It has been that way since they did the first test, four times ago and it remains constant through day 150 which is pretty cool.

I just wish the chymerisms report, the blood test results, the bone marrow biopsy’s, etc. all meant that if they were good then I felt good, but no sir, it does not work that way. I did have a few good days this week, today being one of them, but unfortunately the balance of the week didn’t go so well. A few of the days it was the same old muscle soreness and tightness, where going down the stairs is an adventure in itself. And the other two days I felt like I had flu symptoms which I haven’t had to deal with for a while. The whole deal…shakes, sweats, feeling just awful. Like I said, the whole nine yards. I did take my temperature and didn’t have a fever so all was fine. It was just another small stretch that I had to get through. And yes, if you picked up on the fact that I took my own temperature, and not my wife to be Evey, you were right on. I have had to do without her priceless and invaluable support and love for the past three weeks or so. Let me be fair though, she was nice enough to come home for a couple of days between trips. I’m just kidding of course. As much as I would love to have her here with me, she is really enjoying her time in the Philippines. I’m just happy she gets to experience the unbelievable qualities of that place first hand, not having to go on my word. Anyway, I got off on a bit of a tangent there. It’s certainly tough having her gone for so long, but I get to have her back in a few days so I am looking forward to that.

It was a rough week but honestly, reading through what you guys wrote really helped me get through it all. It also helps knowing that my bad days have nothing to do with my long term recovery. As horrible as those days are, knowing that all I have to do is power through them with the knowledge in the back of my head that it’s not holding up my recovery, it just makes it easier to deal. Another thing that makes it all easy to deal with, for which I feel so lucky and thankful for, is my job. I had a quick informal meeting with my boss this last week when I popped into the office, and he basically told me as he always has, that my health is the most important thing and Ingram will do whatever necessary to ensure that not an ounce of stress will come from work. Of course everyone knows that my health is the most important thing, as it should be with everyone, but it’s great to hear that from the company you work for. It’s just another reason why I am the luckiest person in the world for the support system I have. Thanks Rich!

So that’s pretty much it my friends. I thank you all once again for the unreal love and support you never cease to send my way and I wish you all a great week. I know I am going to have one, even if I do have a couple of rough days thrown in there. 150 days baby, let’s keep this train rollin’…

Day + 144

2009-03-16T16:02:00.000-07:00

Hello everyone, let me start out by saying thank you to the family and friends that sent a message after my last entry. I really appreciate what you all wrote and I'd like you to know it goes a hell of a long way in my recovery. I know what I wrote last week drew a lot of responses, both on this message board and off. I guess I was caught at an emotional time and let it all spill out onto the keyboard. Sometimes it's good to see what is happening a layer or two deeper than just my blood counts. That is what I was hoping to convey in my last posting and based on what I heard from multiple people, that's what was done so I'm happy about that and thanks for your responses.

As difficult as it has been at times, there have been more times by a multiple of three or four where the times have been great. All of the visits to my hospital room from both friends and family, the fact that Evey stayed with me in the hospital every night she was in town, the thoughtful gifts and care packages, the mountain of books and dvd's, the dinners when I got out, I could seriously go on and on. My point is that I don't want you to think it has all been rough like I wrote last week. As terrible as this journey has been, it has also been pretty unbelievable with the outpouring of support, emotions and flat out love. I feel so lucky to have the people around me that I do. I don't want to say it was taken for granted before I came down with this disease, but I was certainly shocked as to what I experienced. I never could have thought the human spirit could shine through the way it did, and I owe everyone a huge debt of gratitude that I don't think I will ever be able to repay. From my family and friends to the people on this blog who read everyday, who I barely even know or knew a long time ago. It has just been unreal and those people have completely overshadowed the rough times I described last week. Those times are real and they are certainly not over yet, but with the support group I just described, there is no doubt I will come out on top of this thing.

As far as my current state goes, things could definitely be better. I’m not sure what it is but my muscles have seemed to grow tight and sore, especially in the morning. For the past week or so, I have been dealing with this and it seriously sucks. It’s difficult for me to get out of bed, and when I finally do it takes me over a minute to make my way down the stairs. For a guy who used to run eight miles at a time, it’s a hard pill to swallow. The worst part is I’m in too much pain to take Floyd out and that breaks my heart. If I drive somewhere he goes with me and we spend a lot of time together lying around the house, but I used to love taking him out for his/our daily walks. I can only hope this will be gone soon and things will get back to normal. I’m confident they will. I meet with my doctor tomorrow so I’ll see what he says about it.

Outside of that, on the medical side, things are going very well as always. My doctor is continuing to pull back on some of my medications which is a great sign. In fact, he has told me that as my medications go away, I should start to feel a lot better on a more consistent basis. I can’t wait for that. My blood markers all look great and are just where they need to be. No big tests on the horizon, just my weekly labs and meetings with my doctor, so all is good. And again, I read every message you guys write me so please keep them coming. I know there a lot of people who read my posting but don’t write anything in return. I’m not sure why but I’d love to hear from you...it really does help. You guys all please take good care of yourselves and make sure you spend your day smiling. If you’re not then you should question what you’re doing. Until next time…

Day + 132

2009-03-03T16:32:00.000-08:00

Let's start with an update on weight watch '09. If you remember, I had an all time low weight of 142 pounds. I am happy to say that my weight as of today is 168 pounds and seems to be climbing every day. Clothes that used to fall off me without a belt are now tight, to the point where I have to unbutton my top button if I have a big meal. My weight before I was diagnosed with AML was 182. It is unbelievable to me that I actually hit 40 pounds below my normal weight. I don’t know. For some reason I’ve been in a very reflective mood lately and it is really messing with me. I don’t know what it is but I have been looking back on some of the really hard times I’ve been through with my sickness and that point where I was at 142 pounds is standing out the most. I can’t tell you how impactful it is to your psyche when you see your body in such bad shape. I just remember standing in front of the mirror without any clothes on and being absolutely shocked. Almost like being punched in the stomach you’re so shocked. That’s all I can do to describe it. My eyes were completely sunk in to my eye sockets. They were dark and almost looked bigger, but that was just because my sockets looked bigger. My shoulder bones and hip bones also stand out. I remember my skin being totally tight around those bones to the point where I was comparing myself to a victim of the holocaust. My arms and legs were as skinny as you ever could have imagined. Overall, my body looked like it was dying, which it was. The cumulative effects of the chemo and radiation therapy really took hold on that last round and did a job on my body. I just remember standing in front of the mirror, looking at the site I just described and breaking down crying. It wasn’t the first time I have cried through this experience, but it was the first time I had doubts I was going to make it through this. That’s not true actually. The first time I didn’t think I was going to make it through this was when they misdiagnosed the type of AML I had. They told me I had M8 which is the worst kind with the highest mortality rate. I lived with that information for a full day before they came in and told us I actually had M1 which is much more treatable. I still remember being in the shower that day before they told me of my actual diagnosis, thinking how I was going to divide up my money, who my belongings would go to, who Floyd would go to, etc. But for some reason I had an eerie calm about me that time, almost like an acceptance. For some reason, the moment I was standing in front of the mirror looking at my decimated body, I was hit much harder. And it still hits me hard today. I think back on those times and I still well up and sometimes just flat out cry. It’s an odd and very humbling feeling when you are forced to face your own mortality. Today my body has filled out and those days seem long gone, but they aren't. They seem to be right at the forefront of my mind.

I don’t know why I’m sharing all of this with you. As I said, I have been in a very reflective mood lately, and in a very weird way I almost feel like I have to respect those times by keeping them close in my thoughts. I am a very long way away from being able to declare victory over this disease and I know there are going to be more tough times ahead, so maybe this is a way of helping me deal with those times. I’m not sure, but I can’t seem to get those thoughts out of my mind.

Ok, I think I’ve rambled long enough and I apologize for that. Let me get into how things are going as of today. From a medical perspective things couldn’t be better and as I wrote above, my weight is right where it needs to be. My labs are just about perfect with my white blood cells over 6 and my ANC over 4. Both of these are the most important markers and both have rebounded very nicely after my last bout of intestinal issues. The other markers I keep track of are also doing very well but no need to share those with you. I can’t say I’m feeling all that well. I am going through a rough patch right now which as always makes life tough. Every muscle and bone in my body hurts and it is really difficult to even get out of bed….but you do. As I’m sure you have been able to figure out if you read most of my messages, my condition goes through cycles where for a week or two I’ll feel great and all will be well, but will soon be followed by a week or two of not feeling well. That is where I am at today, but knowing that this will cycle through as it always does helps. I’ll get through it like I always do and things will be good again soon enough. That’s about all I have guys. Again, sorry for rambling early on but I guess I needed it. You guys all please take good care of yourselves and we’ll catch up soon.

Day + 122

2009-02-21T14:13:00.001-08:00

Let me start off my saying happy birthday to my girl. Have a great time tonight with the girls and be careful damn it. I can only imagine what is going to go on tonight...ha.

The cat seems to already be out of the bag as you have seen from a few of the messages, so I might as well make it official. I took a major life step on February 11th and asked Evey to marry me...she said yes. It was a really cool night down in San Clemente at a memorable spot for both Evey and I, right above the pier. We had a beautiful sunset and down on one knee I went. The rest is history my friends. We went and had a cocktail on the pier, had a great dinner at one of our favorite restaraunts in town and ended the night being engaged. We are both really excited to be on this road and I think still a little shocked, but it's good shock. I know I can't wait to spend the rest of my life with her and I truley feel like the luckiest guy in the world. I guess that means it's right...right? Don't answer that, I already know the answer. So there you have it, Evey and I are engaged and we couldn't be happier.

On the medical front it has been a tough couple of weeks. I have been battling headaches and intestinal isses for what seems like two weeks straight. The headaches have been with me since my original diagnosis but since my release from the hospital, they gradually went away to the point where I completely stopped taking medication. Unfortunately they are back and I think it's due to all of the stress I've been dealing with over the past few weeks. The good news is I am betting this is only temporary and they will eventually go away as things normalize a bit in my life. Time will tell on that but I feel pretty good about it.

The intestinal issues have scared me a bit. The situation I am in I can't afford to get any sort of infections or viruses. My immune system is still not strong enough or equipped to handle anything like that. I would have to be hositalized and hit with some heavy antibiotics and whatever else is needed to take out the issue...much like what happened on Superbowl Sunday. Luckily the tests, as of yesterday, have all come back negative so I have been able to avoid that, but it still doesn't take away from the fact that things have sucked. I have felt better over the last couple of days so I can only hope this is on it's way out, but we'll see. Again, only time will tell which seems to be my story as of late.

What it does do is remind me that I am far from being done with this fight. As good as things can get for me, and there have been times where I have felt great, but as good as things can get for me, there could be tough times right around the corner...and for no apparent reason. It's just the roller coaster exerience I have written about many times in the past. I'm still on this damn ride and there really is no end in sight. My body is still dealing with the evils of the chemotherapy and radiation. Whether it comes in the form of Neuropathy which is burning sensations in my feet, headaches or the intestinal issues that have hit lately, I still have that poisen in my system and I have to understand it is going to be there for a while. All I can do is keep my head up and deal with it. Although it did force me to miss a NOFX show the other night which really bummed me out. Oh well, they'll be back.

My counts are all still looking very good which is keeping the doctors happy. My WBC had a pretty significant drop last week due to the stomach issues I had, but they are still in the good range so things are fine there. For me now it's just deaing with the tough times when they hit and keeping the good times in check, knowing that things could get bad at any moment. That's the reality of my life at this point and it ain't all that bad all things considered. I have heard some just tragic Leukemia stories these past couple of weeks. As difficult as it is to hear those stories, it helps me put my own situation into perspective which I could use every now and then.

That's about it for now guys. Better times are right around the corner, I can feel it. Take care of yourselves everyone and we'll catch up soon. -Kurt

Day + 112

2009-02-11T15:16:00.000-08:00

Hi everyone. First off, I'd like to thank everyone for their heartfelt condolences about Van. Every one of us is feeling it and I know that everything that has been said and written over the past couple of weeks has helped me.

On the medical side of things, everything is going extremely well. The results from my latest bone marrow biopsy came back in record time and could not have been better. My body is still in 100% remission and there is not a speck of cancer anywhere. There were no signs of immature cancer cells which could be an indicator that there is still a problem, but that looked perfect as well. All in all, the results could not have been better, and as a result they have said that I will not need another bone marrow test for 6 months. That is great for two reasons. The first reason is obvious which is these things are painful as hell and the longer I have to wait for my next one, the better. The second reason is the more important one. The fact that they can wait for six months means they have a huge amount of confidence that I'm good to go for a while and I have very little to worry about in the short term. That is a huge vote of confidence for my health as it relates to the possibility of me relapsing which the doctors are resoundedly betting doesn't happen.

I am feeling better overall. I'm still a lot weaker than I was two weeks ago but I feel myself gaining strength every day. I'm back to walking which is tougher than I thought, but I'm getting there. My legs just don't seem to work together the way they used to. I walk like a beat up old football player, but I'm hoping that with more walking things go back to normal. If I ever want to run again like I used to, that is going to have to get fixed. On another note, I seem to be past the Gastroenteritis which is really a fancy word for the stomach flu. No idea where I picked it up. It could have come from someone close to me who had it or possibly from something I ate. Doesn't really matter to be honest with you. I'm just happy to be past that nightmare. I don't wish that experience upon my worst enemy and I pray I will never have to go through that ever again.

My appetite remains strong and I've gained 12 pounds with more to come. All systems are go my friends and I can only hope I remain on this track. I'm feeling better but also have no illusions that things could turn for the worse at just about anytime. The good news for now is that people tell me I'm looking better and my doctors are telling me my recovery couldn't be going better. How much better could life be? Thanks Van, I couldn't have gotten here without you bro. I have a long way to go but things are looking good. Thanks for reading everyone and please take care of yourselves!

Day + 104

2009-02-03T23:38:00.000-08:00

Saturday has come and gone and all I can say is the service for Van and following events were just perfect. It was a true reflection of the life he lived and the impact Van had on the people he touched. For those of you who couldn't attend the funeral service, let me try to paint a quick picture for you. The church, which was no small church, had a capacity of roughly 200 people sitting. In addition to those 200 seats, they added folding chairs, put seating up on the stage by the altar, opened up the choir seating and then allowed people to stand in any open spot they could find. The service started at 2:00pm and the church with all of the seating and standing room I just described was full at 1:45. While the church was at full capacity on the inside, there was a line of about 100 yards long on the outside of 3 people wide still waiting to get in. On the sidewalk leading up the church you could still see people filing in from wherever they parked which was probably miles away somewhere. I guess what I am trying to say is a lot of people showed up to pay their respects to Van. It was the ultimate testament to show how much of an impact Van had on the lives he touched. If you knew him for a day, a week, a month, a year or if you were luckily enough to have known him for many years, you were his friend…and his friends showed up. The service commenced with about 150 people standing outside the church by the open windows so they could hear what was being said. The party afterwards was quite a time and badly needed by all. I’d like to thank Cindy and the rest of Van’s family for having us there. Evey and I were so happy to be able to be a part of that so thank you very much.

On the medical side I hit a bit of a speed bump early Sunday morning. Unfortunately, speed bumps in my situation could turn out to be a very bad thing so it got kind of scary. I must have picked up something from food in the prior few days leading up to Sunday because what I experienced that morning I never want to go through again. I was awake at 2:00am Sunday morning with the worst abdominal pain I have ever felt and just could not get rid of it. As you could image, every thing that goes along with that came, but normally those things ease the pain. Not in this case. After writhing around in agony until about 7am, I woke up Evey and had her rush me to the ER…an hour away in San Diego. I just couldn’t take the pain anymore and I started to get scared. Well, as luck would have it, the ER was full of people. It must have been quite a sight for those poor people in the ER waiting room to see me sitting there in a wheelchair doubled over in agony begging for some sort of pain relief. Luckily I got pushed up in line due to my AML but it took a good hour to finally make the pain go away. I think the doctor had to administer 4 doses of pain killers to finally give me some relief which pretty much meant knocking me out. Then I woke up and the pain was still there, so he would hit me again and out I would go. That went on until about 5pm or so on Sunday when I finally got comfortable. They took x-rays, did a catscan, drew every kind of blood culture you could imagine and took the typical samples. We’re still waiting for some of the results but what really scared them was the fact that I spiked a fever. In the situation I am in you can’t risk anything when it comes to fevers, infections, etc so they instantly admitted me. I was feeling better at that point but I knew it was a good idea to stay the night there so I didn’t put up a fight. I just felt bad for Evey and my Dad for having to watch the Superbowl from the damn hospital. At least Evey got to have some more of that hospital food she loves so much. I just don’t get it, but I love it. We had a great Superbowl Sunday planned as well. Beers and Brats with family and friends over at my Uncle Hans’ house. Well that all came to a crashing halt. Sorry Evey and Dad, but thanks for being there with me. I woke up Monday morning feeling pretty good but obviously really weak as well. But I’ll tell you this, nothing was going to keep me in that hospital for another night. From the minute I woke up I was on the doctors and nurses about discharging me. They didn’t seem too high on it at first but as the day went on and I showed no signs of fever, things got easier and they kicked me out of there at about 6pm.

So there you have it…my day + 101 speed bump. I’m home now and things are getting back to normal, but it was a healthy reminder for me that I am in the thick of things with this battle. Yes, this was an extraordinary week with the stress of everything that happened, the number of people I came in contact with, the hand shakes, the tears, food, my body just completely worn down, whatever it may have been that caused this. It doesn’t really matter because when it comes to my immune system, something like this could come from anywhere. I don’t even want to imagine what would have happened if I were alone. Can you say ambulance ride? I’m not going to beat myself up over this for being careless because I do believe that based on this weeks circumstances this was unavoidable. But again, it’s a good healthy reminder that I still have a very long way to go before I can get out there like you lucky folks and not have to worry about this stuff. What a great day that will be when it comes, and it will come.

So as you can see it has been a hell of a week. I keep shaking my head saying how could things get any worse. Things have to turn around and start to get better sometime. But you can’t do that. This is life and all you can do is deal with it the best you can. No doubt this will go down in my history as one of the worst weeks of my life, and I can already look back and say I could have handled things differently, but no sense in that. My mindset right now is simply, this is life, deal with it as best you can, be optimistic that things WILL get better and learn from the things you could have done differently. Easier said than done would be the best thing I could say to close out this message. Thanks for reading everyone and take care.

Van Service Information

2009-01-27T17:50:00.000-08:00

Thanks for being patient everyone. Please see below for all service information for Van. More information to follow as it comes to us but here is what we have as of now.

Please use GOOGLE MAPS and NOT Mapquest when getting directions. Mapquest directions are incorrect.

Funeral Services Info:
Saturday, January 31st at 2pm
Episcopal Church of the Blessed Sacrament
1314 N Angelina Drive
Placentia, CA 92870
714-528-2995
www.bsacramentchurch.org

Burial following the ceremony at Memory Garden Memorial Park and Mortuary
455 W Central Avenue
Brea, CA 92821
714-529-3961
www.memorygarden.com

Van - Monday, January 26th, 2009

2009-01-26T08:22:00.000-08:00

Heartbroken is the only word I can use for how I am feeling right now. Well that is the dominant one. Others would be confused, angry, dumfounded...so many more. Van, one of my best friends passed away on what looks like Saturday night. I don’t even know what to think right now. How could this 29 year old kid with so much life, happiness and energy be gone from our lives? Nothing makes sense right now except for the fact that Van is gone and we have to accept and deal with it. Do you know how difficult that is when you are talking about someone like Van? This was a 29 year old kid who all of us yesterday just kept looking at the door expecting him to walk through yelling, “Just kidding guys”. But obviously that never happened.

So the point of this message is twofold. One is because I just need to get my thoughts down somewhere. I can’t articulate anything verbally so I guess I’ll try this. The other purpose is to let you all know what we know because Van had great friends on both coasts and across the country and it’s only right that everyone knows what happened, as far as we know this morning. What I can tell you as of now is that Van passed away peacefully on Saturday night in his home. It will be up to his family and Staci to decide how much information they want to release beyond that, but I think it’s important for everyone to know that he did pass quickly, peacefully and with no pain.

Personally, I am wrecked. I just don’t know what to do. Everyone reading this blog knows what I have been battling with for the past 8 months, but what they don’t know is the role Van had played in my recovery. Without hesitation or question I can say that Van was there EVERY time I needed him and he put me and my well being ahead of himself. That includes weekdays, weekends, mornings, afternoons, nights, didn’t matter. If he was in town and I needed anything, Van was there with a smile on his face not even questioning why he was there, just happy to be there. He was team captain for the Light the Night Walk event in which we raised close to $15k and that was all his doing. If he was out of town, it hurt him that he wasn’t there for me. That is the kind of person Van was to me personally. I will never forget his spirit, his desire to help and most of all his absolute heart of gold. I know there are stories like this with just about everyone who was fortunate enough to have Van touch their lives, this is mine. There is so much I am going to miss about him it’s not even worth listing, but that list is going to grow every day that guy isn’t in my life and it kills me to even think about it. I lost a brother on Saturday night along with a lot of other people and we’re going to have to find a way to get through this, no matter how impossible or hard it might seem. One thing I know is that Van wouldn’t want us wallowing around in our own self pity. Sorry Van, this one is going to hurt for a while so I can’t make you any promises, but I’ll try.

We’ll figure out the best way to get more information out about services, etc. I’m not sure if this is the best avenue for that or not, but feel free to check back here until we do get it figured out. Again, this will be up to Van’s family and Staci.

Van, from the bottom of my heart and everyone you touched, we will miss you my friend, very much.

The family has asked in lieu of flowers, Van would want all donations in his name to go to the Leukemia and Lymphoma Society. This is something Van started upon my diagnosis and his family feels he would like to see his work continued:

Donate by email: http://www.leukemia-lymphoma.org Look for "How to help" section on left side of screen towards the middle/then click on "Donate"/click on "online donations" (first bullet middle of screen)/fill out form- designate your donation "in memory of":

Van Skoglund
5973 Calle Cuervo
Yorba Linda, CA 92887

OR
Donate by Phone - Call (800) 955-4572

If the donation is in memory or honor of a loved one and you would like an acknowledgement card sent to a family member informing them of your donation, please provide Van’s full name and address (above).

Day + 86

2009-01-16T14:37:00.000-08:00

The proverbial light at the end of the tunnel has arrived and my appetite is back. I can’t tell you how good it feels to be hungry again. How it feels to enjoy the food you are eating rather than trying your hardest just to keep it down. How nice it is to look forward to eating rather than dreading your next meal. It is so difficult to put into words how terrible this appetite thing is unless you have lived it or seen in first hand with someone you love or care for. And it’s amazing how this one issue just completely ruined me. Now that my appetite is back I feel like a new man. I am slowly putting weight back on but more than that, I’m just starting to feel like myself again which is something I have missed for quite some time. I’m sure anyone close to me can verify that. I feel like talking to people again, going out for walks, catching up on idol work that has been sitting around because of my total lack of motivation, etc. It just amazes me that all of those things are related to the fact that my appetite and just overall eating habits were so out of whack, and now it’s back and I feel like a new man.

On the medical side of things all is well. My blood counts continue to hover exactly where they should be, to the point that my doctor has now lowered my required hospital visits to one day per week as opposed to twice a week. If you remember I started out with going to the hospital three times per week, so this means things are on track on the medical side and progressing according to plan.

So that’s about it. Things are going very well and I feel great which is great news for Evey who now gets to take a break from trying to get food down my throat on a daily basis. Poor girl, but at least it’s over for now. It’s so funny how things can turn on a dime so quickly. I remember about 3 weeks ago I was meeting with my doctor and told him with no joke in my voice that I truly felt like I was falling apart. I had no appetite and was losing weight, my feet absolutely killed me due to a condition caused by chemotherapy where the nerve endings in my feet get all messed up, I had zero motivation to do anything and my personality just seemed like it was turning dark. This was 3 weeks ago. He looked at me, we addressed each “issue” I was experiencing and he told me “One morning you are going to wake up and you will just feel good. There is no explanation around it except that it will happen”. At the time that meant nothing to me given the state I was in. At that point in time I seriously had forgotten what it felt like to feel good, or even average. It’s a terrible feeling when you can’t even remember what it’s like to feel average. Well, I’m happy to say that I am there and that morning has arrived and what a great morning every morning is when you feel like this. Whether it’s short lived or this is my road going forward, I don’t care. I am living up these good times and loving the fact that I feel like Kurt again. Take care everyone and we’ll talk again soon. Look for me at the Laker game tonight. I’ll be the one in purple and gold.

Day + 79

2009-01-09T12:11:00.000-08:00

Here we are at day 79 since my transplant and at times it feels like yesterday. Sometimes that's a good thing and other times it's not so good. I had this vision in my head that my recovery would be completely linear and as time progressed, so would my recovery. Things couldn't be further from reality. What I have found is that my road to recovery has left turns, right turns, sometimes u-turns, hills, valleys...the whole deal. These turns, hills and valleys manifest themselves in random pains, nausea, complete loss of appetite, weight fluctuation; the list could go on and on. My point to all this, is now that I know my recovery isn't going to follow a straight line, time does not necessarily equal get better; I think I'll be better equipped to handle this stuff in 2009. At least that's what I'm going with.

My counts are all looking good as usual and in fact, I may even be able to start pulling back on some of the key anti-rejection medications. If that turns into a trend and we continue to pull back on more of these meds that would be huge. One thing I really want to get away from is all of these medications and this could hopefully be a start to that.

Some more good news which is actually pretty funny to me is my hair is starting to grow back. But it's like fuzzy little baby hair. Evey and I are getting a kick out of it. I can joke about it all I want, but in reality it feels pretty damn good. It is visual proof that my body is moving on and recovering from the poison of the chemo and radiation. As I said in my last message or a couple of messages back, the small victories are what count and the fact that this one is tangible makes it even better.

Now I just need to get my weight up. I'm not sure if any of you have experienced what it feels like to not have any appetite, ever. It is miserable, especially when you NEED to get your weight up for obvious health reasons. Right now I am about 25 pounds underweight, and any kind of food at any given time of the day just sounds terrible. What do you do when just the thought of food makes you sick? Well, the first thing you do is force down what you have to, at least to maintain your weight. The last thing you want to do is to lose more weight. Let me tell you first hand that this is torture, especially coming from someone who loves food. It’s like a terrible curse. Anyway, I spoke with my doctor about it and he gave me some liquid medication to help with my appetite. I've been on it now for the past 4 days and that with Evey's non-stop cooking and putting food in front of me, it seems to be working. I've gained 3 pounds back this last week and feel like I can keep more food down than before so I feel like I'm on the right track.

That's about it for now. As you can see I'm still in the thick of the fight and the last month or so has been a huge challenge both mentally and physically, but progress is being made. Thanks for sticking with me…

Day + 71

2009-01-01T15:52:00.000-08:00

Hi everyone,

I am going to keep this message short and sweet and just say HAPPY NEW YEAR and thank you. Each and every one of you holds a special place in my heart. I want to thank you for your messages of encouragement over the last week specifically…you know who you are. It has been quite a year and all I (we) can do is wave good-bye to the past and look forward to a great 2009.

So again, HAPPY NEW YEAR my friends and spread the good word that this good forsaken year is over and it's time to start a new one. Thanks for reading and we'll catch up again soon. -Kurt

Day + 69

2008-12-30T16:22:00.000-08:00

Hello everyone, from a foggy afternoon in San Diego. I wish I could tell you that the last few weeks since my last message have been pleasant, but they have been anything but. I have been battling nausea, back pains, heavy fatigue and the latest newcomer to the party, low equilibrium.

As you could imagine, the last few weeks have been pretty rough for me. My days have been pretty simple. Eat four to six meals a day, walk once and a day, go to the doctor if required and if not then try to squeeze in a movie or something. But now when you introduce the level of nausea I had, the appetite I lost, the back pain that came from it…you don’t even want to get off the couch. You don’t want to eat. You don’t want to talk on the phone. You don’t want to text, email, talk or communicate with anyone in any way shape or form. It really is like living in your own private hell. Due to all of this my doctors put me through some pretty invasive tests that involved tubes going in parts of your body where naturally they just don’t belong. The worst part about that whole experience is that I woke up half way through it and start pulling the tubes out of my mouth. Then I would fall asleep again 5 seconds later, then 5 minutes later I would wake up again and do the whole thing again. Luckily it only happened when the tubes were in my throat and the biopsy’s all came back negative so it all turned out good.

Even in all of that pain, I was still able to find some pockets of fun. The best being able to attend the Laker game on Christmas day when they beat the hell out of the Celtics. It is by far the best professional basketball game I have ever been to. The energy alone charged my battery for a solid three or four days not to mention the fact the Lakers ended the Celtics winnings streak. I am going to stop with sports there because it is going to take me a good 6 – 7 months to get over Sunday’s event’s. Ok, so enough of the pain and misery I have been suffering through over the last few weeks. All I can say is I am happy I am able to find an hour of “sunshine” to write this.

So on the health side, there is some good news. I did learn that my body has completely engrafted to my donor’s bone marrow. This is what the doctors have wanted to see since the test went out six weeks ago or so. It means that the likelihood of complications that should arise from the transplant should be cut down to minimum now because of this. My counts are also still doing very well and continue to impress the doctors. Some of the issues I was having during the last few weeks led my doctor to send me to see a neurologist. He seems to think my headaches are deeper rooted that just surface pain. I disagree but we’ll see. This means I have to go in for an MRI in a few weeks, but I’ll be sure to report the finding of that back to you as I get the results.

That’s about all I have for now. My victories are being measured in very small doses lately. If I sleep through the night without being restless, that is a victory. If I wake up in the morning and can make to the kitchen and make a bowl of cereal without my back killing me, that’s a victory. If I don’t pick up a head ache inside of 15 minutes of waking up, that’s a victory. If I can make my girlfriend smile at any point of the day for any reason what so ever, that’s a victory. There are a million others, but I’ll take that last one of the rest any day. She has done so much for me over the past month especially, she is just unbelievable.

Day + 50 Eve

2008-12-10T18:58:00.001-08:00

Happy day + 50 Eve everyone. Man, just about at the 50 day mark. That is pretty sweet I must say. I just read through some of the postings on the blog and I must say they still continue to make me smile. I am a pretty lucky guy to have all of you in my corner, and I know there are even more of you that don’t write. It’s funny, I can’t tell you how many times I run into people I don’t even know who read the blog on a regular basis. It’s a trip. My thanks go out to you as well. You guys are all awesome and I appreciate every word you say and write so please keep it up.

I have some pretty cool stuff to share with all of you tonight. At my hospital appointment on Monday, my doctor came to me with a letter from my donor. I seriously had it in my hand for 5 minutes before I finally started to read it. I don’t know why either. I guess I was a little afraid, unsure, nervous… about what I was about to read. Instead of picking out the highlights, I’ll just share the whole letter verbatim with you:

Sweden Oct 21st, 2008

Hi,

I’m a 44 years old man from Sweden. I’ve been a donor for bone marrow for about 15 years, but I haven’t donored before. When I was tested this time and was told it matched you, I didn’t hesitate a second to do the donor.

I’m sure you’ll do fine and wish you the best of luck during the process. If it’s ok with you, it would be nice to hear from you in the future.

We could exchange email addresses or so through our hospitals.

Good luck from Sweden.

I’m not embarrassed to say I cried when I read this, and still continue to well up every time I read it or even talk about it. This is the most powerful, impactful, moving letter that has ever been written to me and I wish I could put into words what it means to me, but I can’t. Everything would be understating by a mile how it has affected me. All I can say is I truly feel as though I have an angel on my shoulder, and that angel lives in Sweden. What am I going to write back to him? I have no idea. I mean where the heck do I start? Thanks for the new life. Thanks for the sacrifice. I really have no idea, but he will be getting a letter ASAP. And the kicker to the whole experience…the date he wrote the letter, Oct 21st, is my birthday, and there is no way he knew that due to donor privacy laws. If that isn’t amazing I don’t know what is.

As far as the results of the latest bone marrow test go, I’m still waiting for the results that show how much of my immune system belongs to me and my donor. Now they are saying I should have those results back by the end of next week. Either way, I’ll report back to you as soon as I have them. All blood counts continue to be exactly where they should be. WBC is at 4.9, HCT is at 31.8 with Platelets coming in at 147,000. With all of that said, I did have an absolutely horrible night on Monday night. Probably the worst night I’ve had in months and rivals some of the worst I’ve had during my chemo battles. Luckily it was very short lived and I was back at it about 24 hours later. It was a very painful reminder that this fight is far from over and I still have a long way to go. Regardless, I made it through Wednesday and I’ll make it through whatever else is thrown at me.

Take care guys and thanks for reading. We’ll catch up again soon.

Day + 41

2008-12-02T17:08:00.000-08:00

Hi everyone. I hope you all had a happy Thanksgiving. I know I did and it definitely had a different meaning this year given everything that has happened. It has always been my favorite day of the year for the simple reason that you can eat great food, drink, nap and watch football all day. And of course the Cowboy game just makes the day that much better. But before this year, I could never really answer the old, "What are you thankful for?" question. I don't mean to sound like I've taken my whole life for granted, because I haven't. I'm always thankful for the place I live and for the family and friends I have. It's very easy just to shrug that question off and say yeah, life is good and I'm grateful for it. But now, everything gets put into a different perspective and I find myself deeply thankful for everything, on a far different level then before. I could very easily be dead if not for the actions and support of many people around me. That is a very odd feeling to get your arms around. All day long I found myself drifting into weird reflections of the first hospital when I was sick but didn't know what was wrong yet, then going back to the conversation with my doctor where she told me off my diagnosis, then to my battles with the chemo and later the radiation, then thinking of the non-stop support from my family, old and new friends, doctors and nurses. The visits, the thoughtful cards, books and gifts to help me take my mind off of the reality and of the situation. All of those things were going in and out my head all day long. And it's funny, I think the only reason it was all hitting me all at once is because it was Thanksgiving. I guess that's the whole point of the day. And please don't think that all of these thoughts made it a bad day for me, because it didn't. It really did quite the opposite and made it not only a great and happy day, but a special day...and the Cowboys beating the hell out of the Seahawks keeping them in the playoff hunt didn't hurt either.

Ok, enough of that babble. Let me update you on how things are going with my recovery. So far, everything remains on track and the doctors are still very happy with everything they are seeing. My blood counts are still hovering right in the range they should be and I have been feeling great. Things have just gotten better and better for me since that first really bad week of me getting discharged from the hospital. My nausea is gone for the most part and food has been tasting really good. Because of that, my weight has been going up as well. I have gained about 7 pounds since I’ve been out and that will continue to go up for another 15 pounds or so. That should get me to my target healthy weight. I’m still walking just about every day and while I’ve been in Orange County I have been able to walk with Floyd which has been really nice.

On the cancer side, all is good as well. Every 30 days since the transplant, I will be getting a bone marrow biopsy done to determine 2 things. 1, are there any cancer cells in my body. 2, how much of my immune system is mine and how much is my donors? I got the results from the first part yesterday. My body, blood and bone marrow as of now is completely cancer free and has been since I entered remission. They were even able to do a deeper dive into some of the trouble areas where the cancer was more prevalent and grouped together. In those areas as well, they saw no signs of cancer. As you can imagine, it is a pretty stressful time between the test and the results, but to hear those words that you’re still in remission is pretty unbelievable. I won’t get the results of the second part until late this week or next week, but what I’m looking for is 100% of my immune system to be that of my donor. That means that it would have fully taken over my body and pushed out my own faulty immune system. We’ll see what the results show.

For now, I’ll continue to take my 35 pills per day, walk as much as I can and eat as healthy as possible. Seems to be working so far. The only downside of this week is that my girl is in NY until Sunday. That's alright, she'll be back soon and all will be right. That’s it for now. Take care everyone and thanks for reading.

Day + 29

2008-11-20T22:24:00.000-08:00

I GAINED TWO POUNDS! Sorry for yelling but in my current condition, 2 pounds is huge and I'll take it. Greetings from the new beach pad, and a great new pad it is. On one side we have the bay with a bunch of boat docked on moorings right off the shore. Right across the bay there is a big hotel which you can hear music from on weekend nights, or at least that's where we think it's coming from. About 4 blocks directly behind us is the ocean. Our place is positioned right on the end of the Mission bay peninsula so we’re perfectly placed for both bay and ocean. It really is a perfect spot to get well and I am loving it more and more every day. Evey and I go on walks just about every day ranging from 1-3 miles so we have done a good amount of exploring so far. Just the other morning we were walking along the ocean side and saw a bunch of dolphins sharing waves with the surfers. I had to sit down on the bench for 5 minutes just to soak it in. It was an unreal feeling just knowing that this is where I’ll be living for the next 6 months. The only thing missing is Floyd, but he has visitation rights so we’ll be seeing him occasionally.

So again, I gained 2 pounds which is huge considering I am right now about 30 pounds underweight. My last hospital visit really took it out of me for some reason. I guess it could have something to do with the chemo/radiation combo combined with the fact that I had a new immune system introduced to my body. I need to keep reminding myself of that. Anyway, I am way underweight right now and my goal now is to put it back on as quickly as possible. My clothes don’t fit anymore and I feel like I look someone out of a prison camp. I feel like one of those skinny African kids on a charity infomercial, asking for someone to “adopt” me for the cost of a cup of coffee a day. You get the picture. I’m pretty optimistic I’ll put it back in pretty quickly, but I have a couple issues I need to battle through. The first is the bad nausea that hit me when I got discharged. I had it really bad for the first 10 days or so and it has seemed to pull back a bit this week, but it still comes and goes. Nausea just makes everything look and taste horrible, no matter how hungry you are. The other issue is my taste buds, or lack there of. The last round of chemo and radiation completely fried my taste buds so foods not only taste different, but they taste bad. Everything has a weird tinge that makes all food, no matter how much you love it, taste off. And after a couple of days of that, you just don’t want to eat at all. Luckily my taste buds have finally started to come back around this week. The doctor said it could take as long as 6 weeks so I am hoping they are here to stay and not just flashing in and out. We’ll see. So once I get past these two issues, which I already kind of am, I should be back on track to put this weight back on.

As far as the rest of my health goes, all is good. I feel much better than last week and my blood counts are still very good. White blood cells are at 3,600, Hemoglobin is at 10.6, Hematocrit is at 31.9 and platelets at 119,000. All are doing great but my platelet count seems to be dropping a bit. They are still in great shape but slowly going down…no problem at all. My walks are getting better and better and I feel like I’m getting more energy with every day that passes. It will be a while before I can back into a good exercise program, but walking for now is doing wonders.

That’s it for now everyone. All is well and will keep getting better as the days go on. Take care, be well and thanks for reading.

Day + 19

2008-11-10T20:12:00.000-08:00

Greetings from the couch, and a very comfortable couch at that. Not a bad night at all. I’m sitting here with Floyd on my right, a nice fire going in the fire place and a good football game which I didn't expect. A hell of a lot better than hospital life, that I can promise you.

So I spoke a bit too soon on our living arrangement, but don’t worry, things changed for the better. We had the Del Mar place locked and loaded at the time of my last message and had every intension of taking that place, but had one more place to check out. Well, Evey went to look at it on Friday and really liked it. She called me and we put the Del Mar place on hold until I had a chance to look at it. We went on Friday after I was released and the rest is history. This place is in Mission Beach, right on the water on the bay side. It’s a summer rental that doesn’t go advertised in the winter time. The only reason we got a shot at it is because Evey put an ad on Craig’s list outlining what we needed. Our new landlord saw Evey’s ad and luckily gave us a call. After two visits and a few phone calls, we move in on Friday. It’s a three bedroom, two bath place right on the boardwalk. You could literally throw a rock to the water and spit on the sand. I couldn’t think of a better place to get well.

So I’d like to say the weekend was good and all has gone well since my release from the hospital, but it hasn’t. For some reason, from the minute I walked out of the hospital to the present, I have felt like crap. Crap would be putting it nicely. There is no reason as to why and the doctors today say it’s a part of recovery. It feels like the last 5 months have just come crashing down on me, all at once and all together. All I can say is that for some reason I only see this lasting for the next day or so then things will be back to normal. I guess you’ll have to wait until my next message to see if my optimistic outlook held true. Either way, the last four days have sucked and I can’t wait until this has passed, whatever it is.

Today was testing day at the hospital so Evey and I spent the day down there. Aside from me just generally feeling crappy, my counts look really good and things are progressing well. For those of you keeping track, my WBC is at 3,000, Hemoglobin is at 10.2, Hematocrit is at 30.3 and platelets at 158,000. All have climbed since my last reading so things continue to get better. I have had minimal signs of rejection and can only hope it stays that way.

That’s it for now. Take care and thanks for reading.

Day + 16

2008-11-07T12:19:00.000-08:00

Greetings from the hospital everyone. Hopefully this will be the last posting from this place…only time will tell. I am supposed to be released today which cannot come soon enough. At this point, there isn’t a whole lot that can keep me from leaving so I should be home bound by mid afternoon. Even though I have only been here for roughly 20 days on this stint, it has seemed like a lifetime and has been by far the most challenging. I can’t quite put my finger on as to why, but to say I am happy to leave is a huge understatement.

I know one huge thing that I will not miss is the menu, and the food that goes along with it. It’s funny because I have a very strong appetite which the doctors love, but I just can’t stomach this food anymore and as a result, my weight has dropped to 153 pounds, the lowest since my diagnosis. I can usually get a big breakfast down, but come lunch time and dinner time I struggle. I’m pretty much living on protein shakes, bars and drinks which doesn’t seem to be doing anything for me from a weight perspective. My guess is I will put this weight back on in no time upon my release.

So my departure plan couldn’t be better. Evey and I will leave the hospital today and head back up to my Dad’s house for the next 6 days. Then on the 13th, we will be moving into our new place in Del Mar. If the hospital had it their way, I would be in a hotel from today until the 13th, but that to me was ridiculous so we made the call just to head back to pop’s pad. It’s about a 50 minute drive so I’m still close enough to get here quickly in case something goes wrong.

Thank you to everyone who lent a helping hand in trying to find a place for us. The place we are going with was one of the first ones we really liked, but someone entered the scene and swooped it from us by writing them a check for 6 months of rent. We were bummed but figured there would be more out there, but the more we looked, the more we realized that that place was a gem. Well, as luck would have it, that fat check bounced and now the place is ours. Unfortunately as I said above, it won’t be ready until the 13th but it will be well worth the wait. It’s a stone’s throw from the beach and perfect for what we need until the April/May timeframe.

As far as my health goes, all is good. My counts are looking good and aside from being tired during random parts of the day, I feel great. My doctors continue to use the word amazing when describing my post transplant recovery so I can hang my hat on that for now. My counts for those of you keeping track are: White Blood Cells – 2,000, Hematocrit – 27.8, Hemoglobin – 9.7 and Platelets continue to climb to 149,000. All are exactly where they should be and the goal of my 3 visits per week to the Cancer Center here will be to make sure they remain in line.

That’s it for today everyone. Thanks for reading and we’ll catch up soon.

P.S. Sorry this is so long Kate...

Day + 12

2008-11-03T15:40:00.001-08:00

Happy Monday everyone. I hope that by now you are all coming out of your weekend fog and ready to be productive, where ever you are. Better late then never right?

So in the world of Leukemia, the only four words better than “Congratulations, you’re in remission”, are “Congratulations, you are engrafting”. Engrafting is a word used in the world of the stem cell transplantation. It means the stem cells that were introduced to the host body via transplant have embedded into the bone marrow and started producing new cells. This usually takes 15 days or so from the time the host body cell counts go to 0. In my situation, day + 3 was when my counts hit 0.

Well, the night before last at 3am Sunday morning, my nurse walked in and told me those 4 magical words, “Congratulations, you are engrafting”. That’s right, I started engrafting on Sunday, day + 11. But in reality it is actually Day + 8 due to the fact it took my counts 3 days to hit 0 after the chemo/radiation treatments. I seriously can’t put into words what it means and feels like to hear those words. At that point, my nurse could have been wearing white wings and a golden halo. That is how much it means to hear those words. All the pain I went through over the past 4 months. All of the anger and resentment. All of that time being curled up in a ball waiting for the misery to pass. All of that goes away when you hear those words.

Now there is still a long way to go, but my doctors have all told me that it is pretty amazing to see so much happen in such a sort period of time. They all feel the prognosis is extremely positive based on what they are seeing now. As of today my white cells are at 4,500, hemoglobin is at 10, hematocrit is at 28.9 and platelets are at 37. Those are all up from the day before and are misleadingly looking like healthy counts. Misleadingly because the cells being produced are very immature. It could take up to 3 months for those cells to mature into the cells of a normal, healthy person. During those 2-3 months is when it is most critical, which is why it is so important for Evey and I to find a place down here. It is just too risky to be longer than 15 minutes away from the hospital in case I come down with a fever or any other sign of rejection. We are still looking for a place but getting closer.

The bummer about all of this is that if we had a place down here, I could get released from the hospital on Wednesday of this week. But because we don’t have a place for me to go to, and Orange County is absolutely out of the question, I have to stay in the hospital until we have a place. That is how serious the next 3 months are going to be. I’ll tell you what though, if that is my biggest problem at this point…I’m stoked.

That’s it for now guys but as you can see much more to come. Feel free to lob any questions my way. Until then, take good care of yourselves and we’ll catch up soon.

-Kurt

Day + 9

2008-10-31T22:01:00.000-07:00

Happy Halloween everyone. I can only imagine the plundering that went on tonight. If I remember correctly, the last year of Steve and I grabbing free candy on Halloween was my freshman year in high school. You gotta love that. Even still, I bet there few more of you out there that dragged it along even further. Good for you is what I say. If the groms can go out and get their goods, so can we. And if you are reading this and are one of those houses that gives away pennies, please cease and desist from reading this blog ever again, ha, just kidding, kind of. No offense

So what the hell am I supposed to be writing about…oh yeah…my health? All is good on the western front aside from my mouth and my headaches. What I have been telling everyone is that things are great from the neck down. It’s the neck up that’s killing me. The Mucositis came back in a big way and they have just made my constant headaches multiply in strength. All of this was expected so that makes it little bit easier to tolerate, but it is still a horrible way to live. I can see this hanging around for a couple more days then I’ll be fine again. To be perfectly honest with you, if that is the biggest complanit I have at this stage in the game, I think I’m doing alright for myself.

My blood counts are still very low. WBC (white blood cells) are undetectable but this is expected, the chemo and radiation made sure of that. Book says I should start to see some movement around day +15 or +20. My other counts are down too. A couple of days ago I needed two bags of blood and two bags platelets which brought them back up into the acceptable range. I’m still about 20 pounds light but I can see that going back on once I get out of here and get some of my energy back. So again, all is good on the western front health wise.

Our housing search is taking a bit longer then expected, but we’ll find something. If anyone has any sort of connection that could make this process a little less painless, please drop Evey or me a line. We are looking for a furnished, one bedroom as close to the beach as possible within 15 minutes of the hospital

That’s it for now guys. Take care, be well and we’ll catch up soon.

Day + 6

2008-10-28T18:10:00.000-07:00

Wow, 6 days since the introduction of my new bone marrow and stem cells…amazing. Hi everyone, warm greetings from sunny San Diego. Not that I can enjoy any of it aside from looking through a window. With that said, I hope there are a bunch of you out on the sand somewhere. OK, enough of that, I’m starting to depress myself.

So today is officially Day + 6 and all is on track. The doctors meet with Evey and me every morning to discuss how things are going and everything so far has been positive. The nurses provide feedback regularly as well and they are saying things are going great. I do have somewhat of a sore throat, which they say is a side effect of the radiation treatment. I guess it can really break down the lining inside of the mouth, so irritations like sore throats become more prevalent…but not serious.

On a worse note, my luck ran south today. Part of the post transplant treatment is the need for a drug called FK 506. This drug is critical when it comes to fighting any sort of rejection from the new cells, so not only is it important to make sure I am getting the drug, it’s just as important to make sure I have the right levels of the drug in my system. One other thing different about FK 506 is that it sticks to the walls of the IV tubing, so in order to get a clean reading of how much of it is in my system, they need to draw blood from a tube has not had any FK 506 run through it, or they run the risk of having a false result. A false result meaning the tests show a high amount of FK 506 because they pulled some residue off the tube walls. So what they do is keep one of my two lines clean of FK 506 and dedicate the other line to the administration of the drug. That way, when it’s time to check the FK 506 levels in my system, they have a clean line to pull from.

Well, someone messed up yesterday and administered the drug through the clean line. This means that any future tests on how much or how little FK 506 I have in my system would have to be done on the other arm, blood drawn with a needle…twice a day. The alternative was to have them go in, pull out the contaminated line and replace it with a new one. I went with that and was actually pretty cool. They had the whole thing on a monitor so I got to see the procedure first hand. It’s all good now and my PIC line is back and working. I think I’m going to hang a sign or something this time just to make absolutely sure this doesn’t happen again. I don’t think that will be necessary though, because when news spread about what happened, there were a bunch of pissed off doctors and nurses. I think it goes without saying that the nurse who did this will not be doing it again for quite a while. In all honesty, what happened today is miniscule in comparison to the big picture so we’re already over it and I hope she is too.

That’s my news for today guys. It’s still a roller coaster for me when it comes to nausea, mouth issues and fatigue but those are pretty easy to fight through when you can see the finish line ahead. Thanks again for reading my rambling messages. Just knowing you guys are out there means more to me than you know. Take care, be well and we'll catch up soon.

Day + 3

2008-10-25T23:14:00.000-07:00

Hello everyone. I send you greetings from the hospital as my cells engraft away...I hope. So again, Day + 3 means I am now 3 days post transplant. Things are going well and I am definitely feeling much better than last week. It's difficult not to feel better considering last week was filled with chemotherapy and radiation, but it is still nice to say. I also received some great news yesterday from the bone marrow biopsy I went through last week. The results came back and I am still in remission! I was so glad to hear that news which now means I am well positioned. My nausea, which is my worst enemy when undergoing treatment is not completely gone, but I think that has more to do with the menu here in the hospital, than my treatment last week. And that is no joke my friends.

All is on track from a progress perspective. My counts are at 0 which means it's now time for my new immune system to start to mature and do it's thing. It will probably take about 10-15 days for my cells to start to engraft and build my new immune system. Until then, all I can do is wait and be very careful not to let in any sort of infection. They even have me quarantined to my room, whereas before I was at least able to leave my room and walk the floor. When I tried that today they beat me back with a stick and told me I’m stuck here until my counts return.

It looks like we will only be here for a few weeks and then Evey and I need to live near the hospital. It is going to be tough leaving Orange County but I need to be as close as possible to the hospital for 150 days post transplant. So for the next week Evey will be hard at work trying to find our next residence. Fun, fun stuff but we’re looking forward it. If you live down here, all I can say is there goes the neighborhood

Take care guys and be well. We’ll catch up soon.

Day 0 (October 22nd, 2008)

2008-10-22T22:23:00.000-07:00

Day 0:

If you're unlcear on what day 0 means, please go ahead and read the last blog entry which should explain everything. Well, what a wonderful way to spend a birthday. Yesterday was the big day and I spend it curled up in a ball fighting though the worst stomach pains ever. I didn’t expect those back to back doses of chemo and radiation to really hit me that hard, but they did. Luckily I am already starting to come out of it but it has been a really tough go since Saturday afternoon when it started.

So, as of today I have completed my final rounds of chemo and radiation and have just finished taking in my new stem cells, so that transplant is done. I can’t believe it myself, but the day has finally come. There is a long way to go but I can at least say I am now on the road to recovery. It’s an odd feeling knowing that someone out there in another part of the world went through what they had to go through to get me these cells. Quite overwhelming actually.

Just to give you an idea of how the radiation works, they have you lay down on a table in an awkward position for about 45-50 minutes with your arms taped behind your head in a box type of shape. The first session was the worse because my arms had to remain like that for over an hour while they took measurements. By the time it was over I was screaming at them asking how much longer it was going to be. I’m sure they loved that. The worst part about it was thinking I had five more of those sessions to go. Luckily the final 5 sessions which were done 2 per day were much shorted and more comfortable. More comfortable because I think because I knew what was coming. Well, my final radiation treatment was at 4:00pm today and then two hours later I was watching my new stem cells enter my body. It is absolutely amazing how these things work. There are some very smart people out there who deserve all the respect in the world as well as every penny they earn. I can’t begin that thank those guys enough.

So day 0, my new birthday…the day after my real birthday…what a trip. They say that my new cells are already engrafting to my body so this stuff is already working. With that said, I am still feeling pretty bad right now. It has been tough for me to keep any kind of food down and my headaches are pretty bad, but I am very optimistic that these issues will be better tomorrow.

Thanks for reading everyone and please look out for a new post in the next couple of days. Your messages back still crack us up so please continue to write back. Like I said, Evey and I read every single one of them so keep ‘em coming. You guys are the best and I really don’t know where I’d be without you. Be well and stay in touch.

October 18th, 2008 (Day 0 - 5)

2008-10-18T09:35:00.000-07:00

Hi everyone and greetings from the hospital. Before I get started, I'd like to explain the date above (Day 0 - 5). Day 0 is the day I am scheduled to get my new immune system via stem cell transplant. They call it day 0 because everything going forward will work off of that day. It makes it much easier for the doctors to work with when communicating with each other because that is obviously the critical day that everything stems from. So Day 0 - 5 means that I will be getting my transplant in 5 days, on Wednesday. For example, 2 days after transplant the date will read Day 0 + 2, or simply + 2. Now onto the message.

I just checked back in today after being home for a few great weeks. I certainly had my ups and downs during that time which I wrote about, but that doesn’t take away from the fact that it was a nice and needed break from the hospital. I spent some quality time with Floyd, had a phenomenal early birthday party (Thanks Marc, Christine and Evey), and was able to spend the last few days in San Diego at a work event. I wasn’t there for work but it was really cool catching up with some old friends and spending time with people I haven’t seen in a while. Well all good things must come to an end and as difficult as it was to walk back through the hospital doors today, I am very eager to get going on the final phase of my treatment. The final phase consists of 2 days of chemo which will be Saturday and Sunday, 3 days of full body radiation which happens twice a day from Monday through Wednesday, then straight to the stem cell transplant on Wednesday night. These 5 days of treatment should pretty much annihilate my immune system to the point where the cells in my bone marrow are completely wiped out. For all intents and purposes, I will have no immune system on Wednesday night which is what you need to go forward with the stem cell transplant.

The stem cell transplant is a very non-invasive procedure for both the donor and me. On the donor side it consists of a lengthy process of taking blood out, filtering that blood for the stem cells it needs, then putting the unused blood back in. This is done over the course of four days for four hours each day. So it’s not necessarily a painful procedure on the donor’s end, but it takes a hell of a long time and is certainly a disruption to his life. For that I will forever be in is debt, even though I have no idea who he is. What I do know is that he is 29 years old, is in very good health and is from Sweden. On my side, the procedure consists of a basic blood transfusion where they pump in the new stem cells via my IV. It’s that simple. The amazing thing is that these stem cells for whatever reason know exactly where to go and what to do as soon as they enter my system. In fact, they should start attaching to my empty marrow inside of 30 minutes.

In my last blog, I gave you a brief understanding of blood counts and what the numbers mean. My counts over the last week and a half have continued to go up and get healthier. Although I haven’t felt the best over the last week or so, my counts are showing that my immune system continues to grow, and that is a great sign of things to come as my body takes to the stem cell transplant. As of right now, my white blood cell count is at 6,500 which means I have an immune system as good as anyone healthy and cancer free. My hemoglobin count is at 9.4 which means there are normal amounts of oxygen being delivered throughout my body. And finally my platelet count is at 127,000 which means all is good from a healing perspective. So with that said, all is good and I can only hope I have the same sort of recovery post transplant. My doctors are very optimistic that all will go very well and this will be a huge success. That was really good to hear from them and as a result, Evey and I are just as optimistic.

That’s it for now everyone. Take care of yourselves, be well and I’ll catch up soon. I will try to write every other day or so depending on how I feel.

Saturday, October 11th, 2008

2008-10-11T10:52:00.000-07:00

Good morning everyone and happy Saturday. Even though I haven't worked in quite some time, Saturday morning for some reason always has a great feeling. I know, I know, it's amazing this is the second message this week. Trying to pick it up from my end.

This week has been a struggle as you could tell from my last message, but I'm happy to say the mucositis has started to subside and I am feeling much better again. I was in the hospital on Friday and all looked good. The culture they took off of my tongue came back negative to there is nothing funky going on there. Kind of expected that but it's always good to hear. I can only hope and pray that my time with mucositis is done.

As I said, I was down in San Diego on Friday. I am actually down there 3 days a week getting my counts checked. By counts I mean blood counts. they look at roughly 60 different measurements in my blood ranging from sodium levels to white and red cells. The main ones I keep track of are WBC (White blood cells), HGB (Hemoglobin) and Platelets.

WBC (White Blood Cells) - Important because they are what enable your body to fight infection. If your white blood cells are low, you're immune system is at risk. A healthy WBC is in the range of 4,000 - 10,000.

HGB (Hemoglobin) - Transports oxygen from the lungs to the rest of the body. One of the reasons I went to the doctor in the first place is because I was getting extremely fatigued when I would exercise. I went from running 7-8 miles at a time to a point where I couldn't even go a mile without stopping. That is because my hemoglobin was pretty much gone. A healthy HGB is in the range of 14 - 17.

Platelets - Allow your blood to clot and scab up when you have a cut. A healthy platelet count is above 140,000.

So these are the big ones I keep track of myself and get tested on three days a week. After chemo, it’s perfectly normal that all of these counts drop to pretty much nothing. The chemo is a poison that throws the baby out with the bath water so everything gets killed. That is why you pretty much feel dead during and after chemo. Here is what my counts looked like this week so you have an example of what I’m talking about:

Monday, Oct 6th:
WBC was 0 so that means no immune system. This is a very dangerous and risky position to be in.
HGB count was 6 so my body was receiving less than half of its normal oxygen supply. Because this number is so low, they infused two bags of blood into my body which drives up the HGB count.
Platelets were 4,000...well below the 140,000 mark. Again, because this number is so low, they infused a bag of platelets into my body as well. All of this is done via IV so it is painless but makes for a long day. There is nothing they can do for WBC except wait for my marrow to wake up and go to work.

Wednesday, Oct 8th:
WBC started to grow and came in at 1,300, so my marrow got to it.
HGB was still very low at 7.7 so I had to get another two bags of blood infused. Platelets were very low again at 12,000 so I again had to get a bag of platelets infused.

Friday, Oct 10th:
WBC grew to 4,700 so things are doing great there. This basically means that I have a normal immune system. Don't worry, chemo and radiation next week will take care of that.
HGB measured at 10.3 which is above the infusion threshold so I didn't have to take any blood.
Platelets were 31,000. This is also above the infusion threshold so I didn't have to take any platelets.

So there you have it. I bet you didn't think you were in store for a science class huh. I wanted to give you an idea of what the key blood markers are I get tested for, what the numbers look like and how they affect me. I am officially in my last week of freedom before I go back to the hospital full time. This next week will be full of poking, prodding and testing so it should be a good one. I'll keep you all updated on how those tests turn out.

Take care everyone and be well.

Wednesday, September 8th, 2008

2008-10-08T16:11:00.000-07:00

Hi everyone,

reaching out to you in the midst of another heat wave. I think it hit 100 degrees again today. It’s nice to know that even though I missed most of summer in the hospital, I can count on good old So Cal to extend it out a few months for me. Evey and I are still walking Floyd every morning and it really is one of the best parts of my day. Being outside, smelling the fresh cut grass, spending quality time with Floyd and Evey, feeling the sun on my face and even in one case the rain on my head. You gotta love So Cal. I know I’m loving every day of it while I’m out of the hospital.

Things are all on track with regards to the transplant. I still have a hospital readmission date of October 17th with a transplant date of the 23rd. I have been assured that what happened with the first donor is highly irregular and should not be expected to happen again. For those of you who don’t know, the first donor had what his doctor called “medical complications” the forced us to move on to another donor. It’s tough not to expect something to go wrong given everything that has happened, but we are optimistic that all will go smoothly.

As far as my health goes, I have been doing relatively well. I say relatively because it was only 10 days ago that I finished the toughest, most brutal regimen of chemo to date. Since I walked out of the hospital on Friday afternoon the 26th, I have experienced some nausea and a little bit of joint pain due to some medication, but nothing has compared to what I am battling now…a side effect called mucositis. This is basically a condition that results in extremely painful mouth sores. I know, glamorous huh? I had dodged these for the first 4 months of my treatment knowing the entire time how lucky I had been. Well, my luck ran out and I got nailed by it last Thursday. Lucky for me, instead of having multiple small sores spread around the mouth, I had one big one located right at the base of the bottom of my tongue…sarcasm of course. I could not have been more unlucky. It is no exaggeration when I tell you that this has been the most painful experience I have ever had to deal with in my entire life. I never could have imagined how speaking, eating and drinking could be so painful. Pretty much any tongue movement put me in agony. To make the experience even better, the doctor had to take a biopsy of it on Monday. This meant scraping the top layer off the top of the sore with a hard plastic brush. I’d like to say my eyes were watering but I’m pretty sure I was crying. Just ask Evey, she was in the room laughing at me, just kidding. The good news is I finally feel like it is getting better. It is still there and very painful, but by the way it feels today, I can say it’s on it’s way out.

I touched on the Light the Night Walk on my last entry. Besides, I think most of you who read this blog either donated or participated in the walk. Again, I want to thank everyone who did either of those two things…and I want to especially thank Van Skoglund for taking the lead and handling pretty much the whole thing. He took care of the shirts, coordinated the food, dealt with the charity on one side and all of you on the other. It really could not have been the event it was without Van’s help and Evey and I owe him a huge debt of gratitude. Thank you so much. I also want to thank Natasha for celebrating her birthday with us on that day. If you were lucky enough to be there, you know how much fun it was and how much of a great time Team Chrome Dome had. I will commit to you that we get some pictures of the event on this site. Look for those one or two days from now. We had a huge pre-party, took pictures with Rod Carew, walked on the field of Angel Stadium while getting our mugs on the big screen and closed out the night with a birthday party for Natasha at the Yardhouse. It was quite a night that left a few soldiers badly wounded. It really turned out to be a day that life should be all about. It was a special time with family and friends, giving back to a great cause while having the time of our lives doing it. We couldn’t have scripted it better.

That should pretty much bring you up to speed with what’s going on. Evey and I again want to thank everyone for your unwavering support. This experience is still a roller coaster with ups, downs and loops all over the place, but we will be pulling up into that station soon enough. The transplant phase begins very soon and it can’t come a day too early. I can’t wait to take this on, succeed and be looking back at it in no time.
Take care and be well everyone…

Saturday, September 27th, 2008

2008-09-27T12:31:00.000-07:00

Greetings from the outside. I'm happy to be reporting to you again from outside the confines of the hospital walls. It's been a very long week and I'm happy to see it move on. After spending roughly three weeks of possibly the best weeks of my life out of the hospital, I was sent back on last Sunday for what's called consolidation chemotherapy. I was under the impression that this type of treatment was fairly light in comparison to the others I've gone through, but that turned out to be completely wrong. As it goes, consolidation chemo is much stronger than any other type of chemo I had previously been on, including the FLAG chemo which put me in remission. The thought makes sense because you want to hit it with everything you've got to keep you in remission, but it was a difficult week. By far the toughest 5 day stretch I have had since I was pushed down this path, but as I said I am happy to see it gone.

As of now I am recovering at home and will continue to do so until October 17th. At that point I'll check back into the hospital and start the pre transplant treatments of chemo and radiation. The way the plan stands today, I will be undergoing the transplant on October 23rd. From there the story remains the same. 4-5 weeks of recovery in the hospital, we find a place to stay in San Diego for another 4-5 months.

That is pretty much what I have for you al as far as an update goes. Things are moving along and I'm happy to see that donor number 2 looks like it is really going to happen.

I'd like to thank everyone again for donating and taking part in the Light the Night Walk last weekend. I was so happy to be able to make it and see everyone. Your generosity, caring, thoughts, prayers...all of it was really overwhelming and I can't put into words how touched Evey and I were. That day is really what kept my head up last week during the hell I was going through and I have all of you to thank for that.

Take care everyone and go Angels and Cowboys!

Friday, September 12th, 2008

2008-09-12T11:07:00.000-07:00

Happy Friday everyone. Once again, I am extremely happy to be typing this message from the comfort of my couch. Every minute I am out of the hospital gets better and better. It is a huge cliché, but it is certainly true. You really have to appreciate the small things in life if you are going to enjoy it. A breath of fresh air, the sunset, a walk around the block, the sunshine, quality time with friends and family…I could go on and on. In a weird way I feel lucky to be going through this because it has made me appreciate so much more.

So with that said, I received some bad news on Tuesday when I went down to the hospital for some blood tests and a visit with my doctor. Apparently, my donor’s doctor sent a message to my doctor saying they are having “medical complications” with the donor and they have to push the transplant out by 4-5 weeks. This is something they have never seen before so it obviously threw us all for a loop. As a result, we made the decision to pass on the original donor and go with one of the other two. If you remember, we had the search narrowed down to three donors who were all equally good, so the good news is I’m not giving up any quality. The bad news is everything now gets pushed out 4-5 weeks. So instead of me going in next Friday and prepping for my transplant the following week, I now have to go in next Friday for a round of consolidation chemotherapy, recover for three weeks, then hopefully be ready to go with another donor at the end of recovery. And that is a best case scenario dependant on whether or not they can fast track the new donor through the pre-transplant process.

Frustrating would be an understatement, but I just have to get used to the fact that issues like this that are going to pop up along the way, and I am going to have to deal with them accordingly. It’s certainly not the end of the world, but a month is a month. I still have to look at the bright side which is the fact that I have three high quality matches to begin with. There are a lot of people in my situation who wait many months to get any match. Luckily for me I have multiple options.

Outside of that, I feel great and my counts continue to climb. My white blood cell count is up to 5,700, red blood cell count is 3,500 and platelets are at a whopping 514,000. These are the big three indicators to look at, and all three look great. That’s about it everyone. I plan on enjoying my last week of freedom then getting ready for the hospital once again. Thanks for reading and take care.

Saturday, September 6th, 2008

2008-09-06T13:47:00.000-07:00

Hi everyone and happy Saturday. I’m happy to report that I am writing this blog from the comfort of my own couch watching my own TV. I can’t even begin to tell you how good that feels. For those of you who don’t know, I was discharged from the hospital on Wednesday the 3rd and have loved every minute of my freedom. Sleeping in my own bed, not getting woken up every few hours for tests, eating non-hospital food, feeling the sunshine, walking my dog, I could go on for hours how much I missed the simple stuff…the stuff I didn’t even think twice about before I got hit with cancer. It’s amazing how badly you miss this stuff when it’s taken away. Well, the great news is that I have it back for a couple of weeks and I am going to embrace and enjoy every minute of it.

So as most of you know, the good news came in about 10 days ago that my white blood cell counts had taken a dramatic turn for the better pretty much overnight, and then continued to get better and better as the days went on. This is what led to my 2 week vacation from the hospital. Not only were my counts up, but they didn’t find any cancer cells in the blood they were pulling. All of this was excellent news. My bone marrow was coming to life and they were making clean cells.

Well, the news got a hundred times better yesterday. I received a phone call from my doctor who told me I am officially in REMISSION! That’s right, round 3 of the chemo treatment I was on did some serious ass whooping on the cancer in my bone marrow and cleaned it out. What this basically means is that I am going into the transplant phase under the best of circumstances. Had I not hit remission, my chances of success would have been much lower, so as you can imagine to get this news was just amazing. I think my doctor was more excited about than me which is always a good feeling.

As far as my condition goes, I feel great and my energy levels keep getting higher and higher. I’m walking Floyd everyday which is tougher than I thought, but I am starting to feel stronger. It’s great to be back behind the bbq and I am starting to enjoy food again. I guess you could say all is good in Kurt’s world.

Anyway, that is the news I have to share with you as of now. The great news just keeps coming and I can only expect that to continue. Thank you all once again for your support, prayers and thoughts, they seem to working so keep em coming. Talk to you soon.

Sunday, August 31st, 2008

2008-08-31T19:47:00.000-07:00

Hi everyone, got some great news to share with all of you. Got word a couple of days ago from the doc that my white blood cells counts have taken a huge U-turn and climbed from 0 which is where they have been since the first round of chemo, to 1,400 in 1 day. This is a huge jump and one they really can't even explain, but who the hell cares, I'll take it. It's the first bit of good news I've had in quite a while and it got better and better as the last few days went by. The next day my white cells nearly doubled to 2,500, and now they are up to 2,800 after a third day of growth.

The best part about all of this is there are absolutely no cancer cells in my blood, but this doesn't mean I am cancer free. To see exactly what is going on, on Tuesday I am having another bone marrow biopsy done to get the results of that 3rd round of chemo. If there is no cancer in my bone marrow it means I am finally in remission.

Regardless of whether or not I am in remission, with this jump in white cells, comes the opportunity for me to finally go home. As of now, it looks like I'll be getting discharged from the hospital on Wednesday the 3rd, returning back on the 19th or 20th for the transplant procedure. This means I get to sleep in a real bed, eat at restaurants, hang out with Floyd, go to the movies...all that good stuff that gets taken for granted everyday.

Well, that's my news. What do you think? Are you as excited as I am? If you're reading this blog, it probably means you have been there with me the whole way which means you are just as excited as me. This is certainly not the end of the road, but it is one hell of a bright spot along the way. No doubt there are many more battles to fight and win, but I know that having you guys right there with me means there is no way I won't prevail. Take care everyone and thanks for reading.

P.S. - Happy birthday Mom, Dad, Hans, Michael and Michael

Wednesday, August 27th, 2008

2008-08-27T22:59:00.000-07:00

Hi everyone,

not a whole lot to report on from my end but it hasn't been the smoothest week, that's for sure. These fevers I have been fighting for the past week or so don't seem to want to leave me alone. They are at least simmering down to the 102 level as opposed to 104+, and they are only hitting at night as opposed to both day and night, so those two things definitely make them more manageable....but they are still fevers none the less. Fevers here mean extra tests all day long, and sometimes all night long. If means extra blood cultures, Tylenol and whatever meds and antibiotics they feel fits the job. All in all it's not that bad, just annoying due to all of the extra hoops I have to jump through. I don't feel any worse though, just warmer.

I also have the pesky cold which has resulted in me going through 3 different sets of chest and head X-Rays, and 2 CT scans in the last 5 days. These guys don't mess around here. They see a sign of one potential issue, they throw everything they have at it. All tests have turned up negative which is news I can certainly live with.

As far as "The Plan" goes, I may finally have some hard dates set regarding treatment. I say "may" because this information came from someone who works with the person who is handling my transplant case, not the actual person. Until it comes from her mouth, it will always remain a "may" situation. Anyway, do you remember when I mentioned there would be an additional week of treatment before the transplant procedure? Well it looks like the fun begins on September 20th which coincidentally enough is the same day of the day of the charity walk. Nice huh? So the 20th and 21st will be filled with chemo treatments. The 22nd through the 24th will be my full body radiation days which leaves the target, go time, all cards on the table, TRANSPLANT day looking as of now like Friday, September 25th. I know there are a lot of questions about this and they will come out as we get closer to the date, but that how everything looks as of now. I must tell you, it feels pretty damn good to have date set, even if it's not set in stone just yet.

Wow, I guess I had more than just a quick update. Thanks for reading everyone and as you can see, much more information to follow as this whole thing unravels. I am feeling and doing great and as always we appreciate all of your unwavering support and love. Take care everyone, be well and we'll talk soon.

Friday, August 22nd, 2008

2008-08-22T23:56:00.000-07:00

So I had a very eventful Friday night tonight. Who says I can't have some fun while I'm in here. Not only did I get to take a walk down the CT Scan (catscan) lab, but I got to do it unattached to my IV machine...and for those of you who have been down here to visit, you know how huge that is. Imagine being attached to 3 IV machines with no relief except for a few seconds to change a shirt for...2 straight months. Now you know how great of a walk that was. It was a great Friday night in the hospital.

Now to the stuff that sucks. I have been battling a fever for the past two nights that has just taken me down. The body temp isn't what bothers me, it's the medication they give me to fight it. These meds pretty much knock me out, so for the last 2 days I have been spending a lot of time in bed and awake or a lot of time in bed and asleep. That existance just sucks but my temp got as high as 104.5 so it isn't something you can just shrug off. I am hopefully at the tail end of the fever but these things come and go pretty quickly so you never know. I just had a reading done a few seconds ago which put at 101.2. Fingers are crossed it keeps going down, these ice packs are starting to get uncomfortable.

So as far as "The Plan" goes (seems like that's what we'll be calling it based on the blog postings), nothing has changed and we are on track. I know they are still trying to get the scheduling side of it nailed down with the donor, but the nuts and bolts remain the same.

Halos seem to be slipping a bit but nothing to worry about, the offense will turn on again. Let's just hope it doesn't turn off again. Cowboys looked really good tonight. First team offense looks solid, defense looks good but could be better and special teams needs some serious help. I'm just happy football is right around the corner. I'm excited about the other football as well. Bayern Munich is back with Klinsmann at the helm so I am hoping they repeat their championship ways and go back to back in the Bundesliga.

That's it guys. Been a rough couple of days but nothing to keep me from smiling once in a while. Take care and be well everyone.

Monday, August 18th, 2008

2008-08-18T23:12:00.000-07:00

Happy Monday everyone, and I can guess you can already tell from the tone of those first few words that I have turned the corner on feeling the pains of chemo round 3. I am officially calling today the end of the misery. My appetite isn't fully back yet but today I was able to do some exercise, sit outside with Evey for a bit and watch a couple of movies in comfort. I won't make mention of the Angel game. All I can say is it's good to be back my friends.

So there isn't much news to report on, but I can give you all an idea of what's to come in the next month or so. As it went with the first two rounds of chemo treatment, my body is now in recovery mode. My white and red blood cell counts are at rock bottom, no surprise, and will be for a few weeks. There will not be a round 4 of treatment. The plan as of now is to go forward with the transplant roughly 4 weeks from now. This does not mean I will be chemo free though. About a week before the transplant, I will go through 3 days of intense radiation treatment and 2 days of chemotherapy. These 5 days, in addition to the treatment I just went through, will pretty much wipe my immune system clean of my body. At that point I'm ready for transplant and away we go. More details to come on all of that as we get closer to go time, but it feels good to know what the plan is and to know things are moving forward. I am very optimistic that my body will be in a perfect state of readiness when transplant time hits. It has been no small sacrifice, but well worth it none the less.

One small side note from the weekend and I'll get out of your hair. As bad as this whole situation has been, I have been able to pull some pretty cool things out for myself along the way, that would not have happened had I not gotten cancer. The most valuable one being able to see the love, strength and caring of my friends and family. You always know it's there but it is amazing to see it first hand. I have a cousin who lives in Northern California who I have not seen in nearly 6 years. No hard feelings between he and I, no drama or fighting that would keep us from being in contact, just two paths going different directions. My guess is you know where this is going, but within a few days of learning about my situation, my cousin Ryan was in his car and driving south to come and see me. I can't tell you how great of a feeling it is to see your family or friends, just drop everything and come see you when you need them most. Hopefully you will never be in a situation like I am in to experience it, but as I said, there are some real gems that shine in even the worst situations, and this was certainly one of them.

Thanks for reading everyone and have a great week. I have a good feeling I will.

Thursday, August14th, 2008

2008-08-14T23:24:00.000-07:00

Hi everyone, I hope all is well. First off, I'd like to thank each and every one of you who wrote a message on the blog since my last post. As you could imagine, this third round of chemo has really taken a heavy toll on me given it's strength and potency, so it was great to plug in and ready your messages. Again, I can't tell you how much that does for me to see those messages.

So yes, this round of treatment has been tough on me. It has been my first real test which makes sense given the fact that the first two rounds were pretty ineffective. I have zero energy, my appetite is non-existent and my stomach is one big knot. That's the bad news. The good news is that as quickly as I started this round of chemo, it has already ended. It has already come and gone as will the side effects and discomfort that came along with it. Where that leaves me now is in another few weeks of recovery while waiting for my blood counts to climb back up.

Again, I want to thank you all for your support whether it comes though cards, donations, messages, whatever...they all get heard and they all go as far, if not further than you intended. This is a tough spot but all is well and I will come out through the other side of this in no time. How could I not considering everything going on in the world of sports. Angels are ruling everyone and the Cowboys OWNED the Chargers on the one and only drive they had their starters in. Going to be a good season.

Take care everyone and thanks again for the support! Will check back with you soon.

Sunday, August 10th, 2008

2008-08-10T21:15:00.000-07:00

Hi everyone, and let me apologize for such a long lag between the last post and this one. A lot has been going on and I have a lot to report on so sorry for the long one this time. So the last time I left you I think it was the day before they were going to perform the always barbaric bone marrow biopsy, which did not disappoint again this time. I'll spare you the details.

Hopes were high on round 2, results came and everything came crashing down. The news was pretty harsh saying that 50% of the cells left in the marrow were still cancer cells. This was quite a blow. What it basically means is that the chemo treatments I have been going through for the past 6 weeks are just not strong enough for the cancer I am fighting. This is a much more aggressive and progressive form of cancer the doctors anticipated, so I have been under gunned this whole time. As you could imagine, when I got the news on Friday night I was pretty devastated, especially with the visions of grandeur that I may have been able to get out of here for a week or so and get my head right. Options completely changed at that point which really only left 1.

Option 1 was to wait for my white cells to come up which could take a couple of weeks, get out of here for a week and come back for round 3 of chemo which could take 3-4 weeks in its entirety,
Option 2 was to get started on round 3 of chemo right away and not waste any time. I absolutely took option 2. I will have plenty of time to get home when all this is done. Wasting three weeks didn't seem like a viable possibility, so as I type this message, I am currently undergoing round 3 of chemotherapy treatment. This treatment is called "FLAG-IDA" chemo which lasts 5 days using three different kinds of chemo medicines and a daily shot in the stomach.

This round of chemo is a whole new ball game. It is 20 times more potent than the first two rounds so it should hopefully wreck havoc on the cancer cells left over. In addition, it requires that I get nightly shots in my stomach which accelerates bone marrow activity. The idea there is to stimulate and grow the cancer cells so they come out of all corners of the marrow, then send in the gnarly "20 times more powerful" chemo to clean everything out and kill it once and for all. Even with all that said, there is a possibility that with this type of aggressive cancer, it still may not push me into remission. More options to come at that point, but chances are good this will do the trick.

I can tell you that the most frustrating part of all of this is being engaged in a fight that you have absolutely no control over. I have the type of personality that I always need to be in control of things, especially if the situation is threatening me in any way, much like this. In this situation, I have to sit back and trust that the medication inside of me is doing its job, fighting the cancer. What I cannot do is lose faith in that, but it's hard not to after two rounds of chemo have come back negative. This is my battle. Continuing to trust the unknown and uncontrollable, sitting back and hoping the chemo is working, when the past two times haven’t. This third round seems to be a better fit for the kind of cancer I have so I need to do my absolute best to KNOW it is going to work.

The good news of this whole ordeal is that my girlfriend Evey took it upon herself to have a pow wow with the doctors and told them that that I need to be able to get out of here for a limited time at some point, risk or not. Given that I have been locked up for close to 7 weeks, they seemed good with it, and today, after being forced to stay in for close to two months, I spent 2 hours outside in the fresh air and sun soaking it up. It was like magic and I can't begin to tell you how badly it was needed.

So as you can see we have had a lot going on over the past 4 days or so. A lot of disappointment, let downs and readjusting of expectations, but also hardening of spirits and understanding that this is going to be a longer, harder road than we originally thought, but one that we know we will get through and one that we know we will look back on one day as a bump in the road.

Thanks for reading everyone and we'll keep you updated as things progress. Take care and be well.

Wednesday, August 6th, 2008

2008-08-06T23:04:00.000-07:00

The news remains the same today. Platelets continue to rise up while white blood cells stay in the basement. My doctor says there is nothing to worry about so i'm not worrying, but I'd really like to see them start to make a move. The encouraging thing again has been the steady growth in platelets. This in now 6 days in a row that they have grown on their own. That means the bone marrow is working and doing what it is supposed to do, just no movement yet on the whites. Tomorrow brings a new day with hopefully new results. We're all anxiously waiting to see the first sign of growth from the whites so hopefully tomorrow is the day.

I did get some good news about tomorrow though. My doctor has decided to move forward with the bone marrow extraction which will test the round 2 chemotherpy treatment. As much as I enjoy having them dig into my bones to scrape out marrow for more testing, we are very anxious to find out if I am in remission or not so the sooner the better. This test will do that and should hopefully have results ready by Monday...good stuff.

Thanks for reading everyone and take care. More updates to follow.

Tuesday, August 5th, 2008

2008-08-05T21:54:00.000-07:00

Hi everyone, just a quick update on where I am at with my counts, and then I want to ask for your help on an exciting event coming up.

My white cell counts are still in the basement at the unreadable levels, but the good news is my platelets continue to rise. They have gone up every day for the past 6 days which is very promising. Again, this means my bone marrow is working, just hasn't started with the white cells yet. Hopefully any day now we'll see some movement there.

So here is where I could use your help. There is a very cool Leukemia charity walk coming up at Angel Stadium called The Leukemia & Lymphoma Society's (LLS) Light The Night Walk. Here is some info about the walk:

The Light The Night Walk is The Leukemia & Lymphoma Society's nationwide evening fundraising walk to celebrate and commemorate lives touched by cancer. Funds raised support blood cancer research and patient services. Cancer survivors light the way with illuminated white balloons, supporters carry red balloons and teams walking in memory of a loved one carry a single gold balloon. Dedication banners designed to honor cancer survivors and the memory of those who lost their battles give participants a chance to personalize their efforts and pay tribute to a friend or loved one. Light The Night 2008 promises to be the biggest, brightest and best our counties have ever seen.

When: Saturday, September 20 2008

Where: Angel Stadium – Anaheim, CA

The name of my team is "Team Chrome Dome"...come on, you gotta love that. I think we're up to 15 people who have shaved their heads so it was only fitting. There are two ways to participate, walk or donate:

1. If you walk, click on or cut and paste the following link http://teams.lightthenight.org/ChromeDome, and follow the instructions to become a participant by joining the team. If you become a participant, there is no donation requirement, but they ask that you bring in somewhere in the neighborhood of $200. Now this isn't your own $200.00. This money should come from donations from your family and friends in your name which would fall under team Chrome Dome. This is if you have signed up correctly. If you have people donate money in your name, they would follow the next set of instructions in number 2.

2. To donate to an existing team member or walker, click on or cut and paste the following link: http://www.active.com/donate/ltnSanta , and follow the instructions. You should be able to choose the team member you want and donate from there. Again, the goal is to have every team member bring in $200.00, so any help would be great. Any size donation toward their name will help and the website makes it really easy. If everyone just jumps on the website and donates 5-10 bucks or more, we should have no problem getting there. This is for a great cause and the fact that it is affiliated with the Angels makes it even better.

If you have any questions, please do not hesitate to contact Van Skogkund at 714-553-0661 or email him at Van_Skoglund@Kingston.com He can walk you through the process which is very easy.

Thanks in advance everyone. I can tell from the outpouring of emotion and support over the past 6 weeks that this group should have no problem stepping up and making this a success. It will be a really fun and rewarding event so if you can make it for the walk, even better. I will be there condition permitting for sure. More updates on my blood levels to follow as I get them.

Sunday, August 3rd, 2008

2008-08-03T19:44:00.000-07:00

Hi everyone, happy Sunday night. I hope you all had a great weekend. Evey and I had a pretty relaxing weekend, visiting with friends and family and watching movies. Just another fun filled weekend here at the hospital. If you can sense the sarcasm in the sentence, you're pretty much right on. Starting to get really antsy in this place. Just gotta remember this is out of my hands and being here is part of the deal. I can usually snap myself out of those moments pretty quickly, but those periods of time seem to be taking longer. Other than the cabin fever, I am feeling really good and healthy so I don't have a whole lot to complain about in the grand scheme of things.

White blood cell counts are still "in the basement", as my doctor would say, but my platelet count is steadily rising which continues to be encouraging. They almost doubled overnight so if I can get that kind of action going on the white cell side of things, I'll be looking good. Tomorrow we will know if there has been any movement, but bottom line is they are still way too low to do anything.

Got some good news today. As far as testing my bone marrow goes, there may be a chance that I could go through another extraction this week. If my white cell count is still rock bottom by the end of the week, they may just go ahead and test for results on round two of the chemo treatment I finished up a few weeks ago. On the other hand, if my white cells show movement and start to go up this week, then they will wait until they start to mature, and then test. Regardless, a test is right around the corner. The best part of this story is they may send me home for five days or so to help me with the cabin fever, whether or not I hit remission from round 2. This will give me some time to get some fresh air, see the light of day, spend time with Floyd and sleep in my own bed. As great as that was to hear, I need to keep from getting too excited because things change around here on a dime. Getting home for a few days would really be great but the prize as of now is to get into remission. That is what I continue to focus on and strive for. We shall see.

That's it for today. Sorry for the long blog but as you can see we have a lot to be excited about. Fingers are crossed that white counts are up tomorrow. If not, we'll just push for the next day. Thanks for reading and I'll update you as things progress.

Thursday, July 31st, 2008

2008-07-31T22:19:00.000-07:00

Hi everyone, long time no talk. As you could imagine there hasn't been much to report on but I will bring you up to speed on the little things that have occurred. When I last left you, the most important thing we needed to have happen was to have my blood counts start to go up. The idea here is to give my body maximum recovery time from the previous two rounds of chemo, which took a pretty hefty toll on my body. My doctors all week have been telling us that my blood counts are pretty much in the basement, but they expect them to turn by the end of the week. And that is pretty much what my morning meetings with the doctors consist of every day. Doc comes in and says, "Blood counts remain low, but you look good. Keep doing what you're doing and we'll expect to see these numbers turn the corner by the end of the week." -Doc (Huge Red Sox fan)
And I respond by saying, "Thanks Doc, sorry about those Red Sox. It was just a lucky 2 series" -Kurt...as I warm up under my bright red Angels blanket Nathan gave me.

Well today I had a little glimmer of hope. I say little because it is very little. My platelet count and white blood cell counts both went up, but in very small amounts. Normally nothing to get excited about, but the fact that the platelets and the white blood cells both went up COULD be a sign of good things to come. Obviously the next few days will be the judge of that, but if this is the case, I'm on the road to recovery my friends. Woohoo. If not, we wait a little longer, big deal. It just means you will all have to be a little more patient on hearing from me...ha, just kidding...

Some post chemo side effects I've been battling with lately are some random headaches, nausea and um...the expected...um...well, bathroom stuff. You get it. Hoping none of that will affect the turning of the blood counts--that's a good question for the doc tomorrow.

That's about it guys. Halos are kicking some serious A$$ right now. Gotta love the roll we are on and then the two trades that are going to mean everything in the playoffs. Bye bye "It's just Manny being Manny" to the National League and hello Gold Glove big bat Mark Texeireirexierxe...or however you spell his damn name. We are stylin' boys and girls. Swept Boston and now we’re gunnin' for the Yanks. Looking good.

Anyway, enough rambling. Good night everyone and thanks for reading. We'll catch up when I get news on the counts.

Sunday, July 27th, 2008

2008-07-27T23:22:00.000-07:00

Hi everyone,

there’s still not a whole lot of news to report on, but it has been a few days so I figured I'd let you know how I'm doing. Aside from having to manage through a few headaches here and there, everything has been just fine. I feel really good and actually starting to feel stronger due to my 25 minute morning exercises. It's amazing what a half an hour can do for the body and mind. I actually had some muscle soreness the other day what excited me. Never thought some sore back muscles could lift my spirits like they did, but they did and just motivated me for more. That has been a huge part of keeping my attitude and spirits in the right place.

As far as treatment goes and as I wrote earlier, everything is on hold until my blood counts go up. When they do, which should be in 10 days or so, we'll do another bone marrow test as see how much cancer I have left. From there it's either round 3 of chemo or transplant time.

Team Chrome Dome has really gained some momentum and people who I never thought would touch the precious little hairs on their heads, let alone buzz them off, have stepped up and gone chrome. As surprised as I am, I'm not shocked. I know you guys and can't tell you how much I appreciate the showing of support. You really are an amazing group of people and I don't for a second question how lucky I am to have you as my best friends and family. I am one lucky SOB and I know it, so thank you very much.

That's all I got this time around. As news comes up I will relay to all of you as always. Thanks again for your support by reading my posts and posting messages yourselves. They mean a lot to me and go a long way on my end.

Take care and be well. We'll catch up soon.

Thursday, July 24th, 2008

2008-07-25T00:37:00.001-07:00

Happy birthday big bro and Paulina. I bet the two of you never thought you would celebrate your birthdays with 10 people crammed in a hospital room in La Jolla. Well, it's all about the people at the party so it was a great time. I hope you enjoyed it. Steak and Guinness on me when I get out of here, maybe a few...of each.

So I wanted to give you all a bit of a deeper dive into the information about the transplant donors. I met again with the doctor today and the news is really good. Apparently I was a perfect 10 out of 10 match with 15 people in the database which was a first. The doc said he had never seen anything like it, so what was initially bad news with my brother's non-match turned into great news with the unrelated match. They now have the luxury of fine tuning the match with three extra pieces of criteria...gender, age and blood type which brought us down to a short list of 3 people. To make the situation even more ideal, these three donors have already gone through the 3 weeks of pre-transplant tests so from a timing perspective, it couldn't be better. Good stuff all around.

So what I need to do now is get into remission. It's that simple. If round 2 puts me there I could be looking at a transplant start timeline of 6 weeks which would be absolutely phenomenal. If I end up needing a 3rd round to get into remission which is a possibility, that timeline could be pushed out by a month or so. But to be quite honest with you, that will be a very easy month knowing I have 3 "perfect" matches waiting for me when I do eventually hit remission. For now focusing on a round 2 success, the donor situation made a round 3 scenario that much more tolerable.

As far as my condition goes, things are good. I'm really enjoying my short but effective morning workouts with the weights and I have had very little all around discomfort. I still get headaches every now and then but those get taken care of pretty quickly with the assortment of remedies they have stocked up down here. The worst part about this whole situation is not being able to read a book outside in the sun breathing in fresh air. That is the number 1 thing I miss most, but I know those days are right around the corner.

Thanks for reading everyone, take care and be well.

Tuesday, July 22nd, 2008

2008-07-22T23:36:00.000-07:00

Good evening everyone, so we finally have some news for you. Unfortunately my big bro is a no go on bone marrow matching with me, but all is not lost. It turns out that I have an unusually high number of potential matches. For the last two weeks my doctors and their staff have been going into the unrelated donor database doing some pre-work, and that pre-word has already vetted out a short list of high probability matches. The doctors pretty much said verbatim that I have an abnormally high amount of matches in the database and the outlook is extremely good for a solid match. So Steve, I know how much you wanted that to happen as did I and everyone else, but we are going to be ok. So now it's all about working that list down to a short list of the best possible candidates, locating them and figuring out how it will work logistically. It will mean a short and inconvenient interruption on the donor’s immediate lives, but the hope is that they are ok with that given they are on the list. No timeline yet, but will be trying to nail one down soon.

I know many of you have been asking about how you can donate bone marrow. The answer is you can and it is very easy. We spoke with the nurses here today and they said they are in bad need of blood, platelets and bone marrow. I have been lucky enough to always have it on hand when I need a transfusion or even now with the bone marrow, but there other people out there not so lucky. You can make a difference by going down to your local Red Cross or blood bank and stepping up for all three. It will help someone in my situation…possibly even save their life.

As far as my current condition goes, I am feeling great, waiting for my blood level to recuperate back to normal. Once that happens, they will test my bone marrow and see if I have gone into remission. In other words, they won’t test me until my counts go up, unlike the first time, where they tested me after 7 days post chemo. That is why this time is may take up to 3 weeks to determine if I have gone into remission.

Bottom line is we are happy with the news over the past couple of days even though I wasn’t able to match with Steve. We are very optimistic about the donor situation and we’re in wait and see mode for round 2 results, but we feel good about them as well. Thanks again for reading and for your support.

P.S. I’d like to throw out a special thank you to team chrome dome…Steve, Scott, Alex, Van, Jeff and a commitment from Kevin. Should be quite a scene when we all get out somewhere together. Thanks guys, brings a tear to my eye.

Sunday, July 19th, 2008

2008-07-20T21:21:00.000-07:00

Red Sox, Schmed Sox. Nice sweep Halos!

Just wanted to check in and let you all know that I am feeling much better since my last posting. That was luckily a short lived period of hell which ended on Saturday. To be honest with you it makes me feel good that the chemo hit me harder this time. It makes me believe that the chemo hit the cancer that much harder which is what needs to happen. I'd be happy to take the pain on my end if it means the same amount of pain is getting inflicted on the cancer. Bright side right?

So again, not a whole lot of news to report on. Should know about the big brother match in a few days so look lout for that. Other than that, had a very good weekend. Angels swept the Sox, visited with lots of friends and family and got my appetite back. All in all a great few days.

Thanks for reading guys and have a great Monday.

By the way, still laughing about your message Estey. That is one for the ages my friend...

Friday, July 18th, 2008

2008-07-19T01:20:00.000-07:00

So I just got done reading the posting from last night and all I have to say is WOW. Very well done indeed. They say that laughter is key to a speedy recovery...I think I got my fair share for the day. If that were the case I'd be on my way home right now to give Floyd a big hug and a kiss, but unfortunately that ain't how it works so here I sit. Please keep the posting coming. It really is the only way I can stay connected to most of you, so don't be shy to say hi every now and then.

Back to business, which has been light lately. As I said there won’t be much news until next week when we finally get to hear if my big bro is a match. All fingers, toes, and everything else your minds could imagine are crossed on that one but if it isn't a match it's not the end of the world. What I learned today is that apparently the likelihood of me matching with someone unrelated is pretty high due to the fact that I'm a white male. I guess it's based on simple demographics so if I were born in let's say, Zimbabwe, I'd have a much more difficult time finding a donor. Anyway, this process is going to take some time regardless, so let's just hope big bro and I are all lined up. I'm feeling pretty good about it myself.

On the cancer side, I must say I've had a pretty rough couple of days. The chemo finally sank it's teeth into me and took me down for the count. I'll spare you the details but it's pretty safe to say that round 2 didn’t let me off that easy. Still not enough to dampen my spirits, but enough to put me through hell for about 36 hours. As of now I'm feeling great and looking at it in my rear view mirror. What I will take from that is the chemo is going to town hard on those bastard little cancer cells which is what I need, so with the bad comes the good.

I'd like to say a few special thank you's to the folks who have donated to the Pediatric Cancer Research Foundation. Doug Anderson, Aunt Cherrie, Lauren, Kevin and Eryn. Money well utilized so thank you.

That's it for today everyone. So I guess just keep on truckin'.

Wednesday, July 16th, 2008

2008-07-16T22:58:00.000-07:00

Hi everyone, I wish I could tell you I have a bunch of news, but the fact of the matter is I don't, and probably won't for another week or so when we hear about the bone marrow match. Right now I am in a bit of a waiting period. For the next couple of weeks, the doctors are going to let the chemo work it's magic while also letting my blood cell counts gradually climb back up to acceptable levels. At the end of this 2 to 3 week waiting period, they will test my marrow again and see how much cancer is left. At that point we'll have a much clearer picture of next steps and potential future treatments.

I officially started my new exercise program today, which consisted of doing push ups and various dumb bell weight exercises for a total of 10 minutes. Thanks for bringing down the weights pops. It is pretty amazing how quickly you can lose strength and endurance when you're enclosed in a small room for a month. My only hope is that 10 minutes turns into 12 then 15, then 30, then who knows...I write a book about hospital fitness and make a million. Oh wait, I'm pretty sure that book already exists. Damn it, late again. Bottom line is it felt really good to actually feel my heart pumping blood again so I'll be looking forward to keeping that going. Besides, gives me something else to do to pass the time.

On a final note, congratulations to Eric and Lisa on the birth of their beautiful (I saw pictures) baby girl, Tatum "Tate" Marie Hunzeker today. I am so happy for you both.

That's it guys, that's all I got. Thanks for reading, writing and staying up on everything. We'll catch up tomorrow.

P.S. Get some sleep Mrs. O

Tuesday, July 15th, 2008

2008-07-15T22:27:00.000-07:00

So go ahead and chalk up another round of chemo. Finished my last bag of round two on Monday night with again, minimal side effects. I got hit much harder this time by fatigue, but not much of anything else. I'll take having to nap a couple of times a day over the alternative any day. So again, I feel pretty fortunate to have made it through another barrage of chemo without having to deal with all of the negative effects that usually go along with it.

As you probably read from my last blog, my hair is completely gone...I'm bald... and it's a trip. There is no question I look like a mutant, but the benefits totally outweigh the negatives. Upkeep alone is reason enough to shave your head. No more bed head which has come in real handy with all of my fatigue. I just pop out of bed and I'm good to go. Throw some water on my face and I'm a new man. For those of you on the fence, I highly recommend it...that is if you can get past the fact that you look like a Martian. If I can get past that, so can you. In all seriousness, it still is a bit shocking when I see my bald noggin, but I am quickly getting used to it so it should be nothing in no time.

As far as tests and results go, we are still about a week away from finding out if my brother Steve is a bone marrow match. We are all waiting very patiently for that one. In the meantime, they already have everything they need from me, so they are going through the non-family donor database now looking for possible matches so they have options beyond Steve just in case we may need to go down that path.

I should get results in the next 2-3 weeks from the chemo round I just went through. They are going to wait a little bit longer on this one and let the chemo do it’s work. The end result here is to get into remission, so that is what we will be focusing on.

I am lucky enough to get to go through yet another spinal tap tomorrow. They want to take a look at the amount of pressure my spinal fluid could be putting on my spinal chord. I thought I was the lucky one to have two of these things done. Just imagine my surprise when they told me I get to have yet another. I tell you, there is nothing like having a 4 inch needle shoved into your spine…3 times. Wow, I really am lucky.

So that’s about it everyone, not much else to report on. Thanks for reading and writing. We'll catch up tomorrow.

Sunday, July 13th, 2008

2008-07-13T22:49:00.000-07:00

Three words for tonight's message...Bald is Beautiful! Say hello to the latest member of the Kojak fan club.

That's it for the weekend everyone. Thanks again for all of your messages, we appreciate and enjoy reading every one of them, so please don't think they fall on blind eyes because they do not. Take care and good night...And good morning to our friends in Germany, Croatia and the Philippines. We'll see you soon.

Saturday, July 12th, 2008

2008-07-13T00:31:00.000-07:00

Good evening everyone. So today is my third day of chemo in round number 2 and all is going well. I feel great and things are running smoothly. Aside from a little fatigue, I feel just as good as I did pre-chemo. This round of treatment will be over before I know it, just like the first round. Unfortunately, or fortunately, depends on the way you look at it I guess, that is about all I have to share. Things slow down over the weekend so you can expect the same amount of news tomorrow as you have read here today.

One thing I would like to do is use this opportunity to congratulate one of my best friends in the world, Jeff Harden on his marriage today to his beautiful new wife Julie. Not sure how you could have made this guy any better Julie, but today you did. Evey and I wish we were there to properly congratulate you both in person, but I know you could feel us there in spirit. Congratulations guys, we love you both!

Good night everyone and thanks for reading. Unless there is news coming in tomorrow, you'll hear back from us on Monday. Take care and be well.

Friday, July 11th, 2008

2008-07-11T22:45:00.000-07:00

Hi everyone, so not such good news to report on tonight if you're an Angel fan...I'll just leave it at that.

Not so much Leukemia news to report on tonight. It was a very quiet day as far as testing and results go which was actually quite nice. The good news is that we finally got to meet my doctor, Dr. Curtain today which went really well. What instantly struck me was the fact that he took the time to answer all of our questions until he was confident we had the answers we were looking for. He also spoke on our level which has been something difficult to come by with the high level doctors since we got here. These are the things we heard about this guy and that's why we chose him without even meeting him. It's good to see the right choice was made.

He did confirm that the form of cancer I am dealing with is aggressive so I will have a fight on my hands. I knew that going in so this is nothing new to me. I'm feeling really good about having Dr. Curtain in my corner, so today only made me feel better than I already do.

That it's for tonight everyone. Take care and thanks for reading, we'll catch up tomorrow.

Thursday, July 10th, 2008

2008-07-10T22:05:00.000-07:00

Hi everyone. Wow, what an Angel game for those of you who saw it. I’m starting to wonder if watching those is good for my health.

So I had a conversation today with the guy who runs the research department here for the entire Leukemia center. He actually signed off on my doctor's PHD so he know's his stuff for sure. Anyway, I asked him for a frank assessment of the results I got last night. He said it would just about be statistically impossible for me to get through all of this without having to go through two rounds of chemo. That certainly put my mind at ease a bit and should do the same for you.

Other news today was the results from the spinal tap. Results came back negative which means they showed no sign of cancer in my spinal fluid. They also ran tests to see if there was any cancer cells in my blood which also turned up negative. The doctors were very happy about those results which means we too were happy. It is a really good sign the chemo has been actively going after the cancer. It didn't quite hit the bone marrow as hard as we wanted, but it was good to hear today that that is the norm rather than the exception. With that said, there is still a chance round 2 won't even get the bone marrow cancer cells down to acceptable levels, only time and results will tell.

I'd like to throw out a special thank you to Kelly Dyer and Bill McGowen for donating to the Childrens Pediatric Cancer Society in my name. Any donation amount will do and I assure you it is going to a good cause. I certainly appreciate it, but more importantly, the kids it is helping appreciate it much more. For more information, please refer to the link on this site.

So the roller coaster ride continues and all we can do is go with it and hold on tight. Day 2 of chemo is going very well and I'm sure it will be over before I know it. That's it for tonight. Thanks for reading and hopefully we'll have more news for you tomorrow.

Wednesday, July 9, 2008

2008-07-09T22:42:00.000-07:00

Hi everyone, the spinal tap didn't happen last night so they actually got it done this afternoon. Evey was lucky enough to walk in the room just as the needle was going into my spine...lucky her huh? I asked her to take a quick photo but she wanted nothing to do with it. Again, the purpose of the spinal tap is to see if there is any sign of infection, bacteria, or cancer in my spine. Just by eyeballing the fluid, the doctor said it looked good in terms of infection since the fluid was clear and not cloudy. We should hopefully have definitive results by Friday or Saturday.

We did get results from the bone marrow test that was done on Tuesday. Unfortunately, I will have to go through another round of chemo to bring the cancer cells down to a level that makes the doctors comfortable. It appears the cancer is a lot more aggressive than they originally suspected. With that said, round two was kicked off this evening. The treatment is called "5 + 2" which consists of the same medication as the first round, only this one is 5 days instead of the original 7.

Obviously not the news we would have liked to report on, but it is not realistic to think I am going to skate through this without a scratch. We can consider this scratch number 1 with more to come. I'm still feeling great and know things could be a hell of a lot worse so as far as I'm concerned, this hasn't changed a thing aside from what will be pumping through my body for the next 5 days.

Thanks for reading everyone and take care.

Tuesday, July 8th, 2008

2008-07-08T20:26:00.000-07:00

Sorry we didn’t post anything yesterday but there was nothing new to report on so we figured why waste your time. Today was a different story as we got a lot done. As I sit here waiting for them to come in and do a second spinal tap, I figured this is as good a time as any to get you all updated.

My brother Steve came down this morning so we took advantage of the fact that he was here to test for a bone marrow match. Everything went well and the test was done. We unfortunately will not know the results of that test for a couple of weeks, but it certainly feels good to have it done. Apparently there at 10 elements that need to match in order for them to call it a perfect match. Our fingers are crossed that it is in fact a perfect match, but if it turns out it’s not, we should have other options ready to go by then. While we wait for the results of Steve's test, they will already be looking for other perfect matches in their database of donors.

I also underwent my third bone marrow extraction today which was just as fun and exciting as the first two. My Mom got to witness this one so that was a nice thing to share with her…ha. This is the test that will tell us how effective the chemo was against the cancer cells during the first round of treatment. The results of this test could be back as soon as tomorrow or possibly Thursday. If things go very well and there is little to no cancer left in my marrow, they will let my body recover and wait for the transplant. If there is still more cancer than the doctors are comfortable with, they will put me through another round of chemo which will last probably 5 days. The good news is that I can expect the same side effects for all future chemo treatments as I experienced during the induction round, which was pretty much none.

As far as the spinal tap this evening goes, the purpose is so they can check and make sure there are no cancer cells in my spinal fluid, which is really an extension of the bone marrow test I went through today. It basically covers things from all angles. Results from this test should be back tomorrow or Thursday as well.

So as you can see, it has been a busy day which isn’t over yet, and not only for me but for my brother as well. I’m feeling good about the results, but anything could happen with the results. Bottom line is whatever we need to do we’ll do, and we’ll do it at 110%.

Thanks for reading everyone and results to follow soon. Take care!

Sunday, July 6th, 2008

2008-07-06T23:38:00.000-07:00

Happy Sunday everyone and I hope you all had a great long weekend. All things considered, mine wasn't too bad. Certainly not my ideal 4th of July weekend, but I was still able to see good friends and family, eat a burger and watch a ton of sports. I even had probably the best cupcake of my life. As I said, not too shabby all things considered.

We had another good visit from the doctor this morning. She said that everything continues to look absolutely perfect with the way my body has responded to the first round of chemo. My white blood cell counts are rebounding extremely quickly, liver looks great, side effects are minimal if any and early indications look like the chemo really took it to the cancer cells hard. The bone marrow test will tell us definitively how well the chemo did against the cancer, but she says she has a really good feeling about it so I'm going to go with that until I hear otherwise.

Not much else to report on for now. The big news for the week will be the results of the bone marrow test for me and transplant match test for my brother Steve. We'll get those results posted as soon as we get them which should be closer to the end of the week. Thanks for reading and take care.

Saturday, July 5th, 2008

2008-07-05T22:10:00.000-07:00

So how are those 4th of July hangovers treating you? I think it is pretty safe to say that this is the first clear headed July 5th I have had in close to two decades. So with that said, I felt really good today and it looks like I have officially squeaked by round one of chemo with little to no side effects. I'm feeling pretty good about that.

As far as next steps go, Steve will be going through some testing early next week to see if he is a match for a bone marrow transplant. We should hopefully know by the end of the week if we have a match or not. In addition to that, I will be going through my own bone marrow testing to see just how much damage that first round of chemo did to the cancer cells currently polluting my body. Based on some early signs, things are looking like it was pretty effective, but we won't know until the test results come back, just how effective it was. From there we'll have a much better picture of what future treatment looks like.

So there you have it, two really big tests to get through next week. You will know shortly after us how things turned out. Take care everyone and thanks for reading.

Friday, July 4th, 2008

2008-07-05T07:03:00.000-07:00

New York medium rare please...

All is quiet on the hospital front. Not much to report on today except that we hope you all have a happy and safe 4th of July. Trust me, we wish we could be right there with you grilling steaks and drinking beers, but that isn't going to happen so you'll have to have enough fun for the both of us.

It is going to be very quiet this weekend given the holiday and my kind of "in between" status, but if any news should come up we will be sure to post it. Otherwise, have a great long weekend and go Angels!

Thursday, July 3, 2008

2008-07-03T23:44:00.000-07:00

Today was another good day as far as feeling well is concerned. Right now we are in waiting mode until next Thursday when they will do another bone marrow test. Until then, there is not going to be a lot of new developments aside from trying to test Steve for a match and finding a match if Steve is not.
Given that there is really not a whole lot to report on, I want to take this opportunity to once again thank everybody for the cards, gifts, cookies, DVDs, magazines, thoughts, and prayers. Everyone of you in your own way is helping us get through this and it is important to us that you know we appreciate it and thank you very much for it.
We will continue to keep you updated but as I said, there won't be much news until we get the bone marrow testing back. Please continue to post your comments and thoughts...
Happy 4th of July to all! We will be here with our fake fireworks compliments of the Cave's!

Kurt Thallmayer

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.

Kurt's Celebration of Life will take place on Wednesday, May 18th at 4pm:St. Joachim Church1964 Orange AvenueCosta Mesa, CA 92627949-574-7400All are invited to attend. In lieu of a Guestbook, please sign Kurt's blog with your favorite memories or words you would like to share...

May 10, 2011

4/30/11- Update

Please keep Kurt in your thoughts and prayers

Day + 79 (March 11th, 2011)

Day + 40 (February 1, 2011)

Day + 34 (Jan 26, 2011)

Day + 26 (Jan18, 2011)

Day + 13

December 27th, 2010

Update

11/26/10

11/24/10

Chemo + Day 13

Chemo + Day 9

Chemo Day 0

10-20-10

9-17-2010

8-19-2010

***Please Read***

Day + ^%$#

Day + %^$#@

Round 2 - %#@!&

Round 2 - %#@!&

Round 2 - %#@!&

Round 2 - Day @%$#

Round 2 - Day - %&&*!!

Round 2 - Day - %@!!!

Round 2

Round 2 - Day - %&*!!

Round 2 - Day - %&^*!

Round 2 - Day - %@!!!

Round 2 - Day @%$#

Round 2 - Day - %@&

Day + 411, Part 2

Day + 411

Day + 297

Day + 251

Day + 221

Day + 201

Day + 199

Day + 195

Day + 182

Day + 174

Day + 161

Day + 150

Day + 144

Day + 132

Day + 122

Day + 112

Day + 104

Van Service Information

Van - Monday, January 26th, 2009

Day + 86

Day + 79

Day + 71

Day + 69

Day + 50 Eve

Day + 41

Day + 29

Day + 19

Day + 16

Day + 12

Day + 9

Day + 6

Day + 3

Day 0 (October 22nd, 2008)

October 18th, 2008 (Day 0 - 5)

Saturday, October 11th, 2008

Wednesday, September 8th, 2008

Saturday, September 27th, 2008

Friday, September 12th, 2008

Saturday, September 6th, 2008

Sunday, August 31st, 2008

Wednesday, August 27th, 2008

Friday, August 22nd, 2008

Monday, August 18th, 2008

Kurt's Celebration of Life will take place on Wednesday, May 18th at 4pm:

St. Joachim Church
1964 Orange Avenue
Costa Mesa, CA 92627
949-574-7400

All are invited to attend. In lieu of a Guestbook, please sign Kurt's blog with your favorite memories or words you would like to share...

Please Read