December 27th, 2010

Hi everyone,

long time no talk, but that is my fault. I've been in a medical induced coma for the last 5 days or so, and finally came out of it on Christmas Day. The actual term for the state I was in, is called p r e s. It pretty much made me completely unresponsive to everything going on - I was aware of everything going on, but absolutely unable to respond. People would talk to me, yell at me, and I knew it, but could say and do nothing. By the time I'd got to the point where I'd broken through on Christmas Day, I was totally freaking out and thought that I was stuck in a cloud. It was very scary. This is the first time I've ever had an experience like this and I hope it is the last. By the way, I had my transplant while all this was going on, and I'll know in about 3 weeks whether this was successful or not. In the time being, I'm doing as well as can be expected.

Take care everyone, thanks very much for all your good wishes and kind thoughts and I'll write again soon. Hope you all have a happy and healthy 2011.

Kurt

Update

Hi Everyone-
Sorry we haven't had a chance to update the blog. Thank you to all who have been commenting and thinking about Kurt; we both appreciate it so much. Kurt has been too ill to get on his computer to type and give an update. The doctors think it is a reaction to one of the many medications he is on. Kurt has been sleeping a lot and trying to get better.

We just did the bone marrow transplant last night around midnight. His wonderful donor from Sweden donated AGAIN for us and gave Kurt more of his cells. Someone hand carried the cells from Sweden to San Diego for him. This was the best Christmas gift both of us have ever received and we will be forever grateful to him. Words cannot express how we felt when the cells arrived in our hospital room late last night for him.

Please keep the positive thoughts and prayers coming our way. We will continue to update our family and friends with accurate information/updates on this blog only as this was the reason it was created for everyone. Stay tuned for another update from Kurt when he gets better or from me as I receive it.

We wish you a very Merry Christmas and Happy New Year...
Love,
Kurt, Evey (and Floyd)

11/26/10

Hi everyone, this would be day number 2 of my second round of chemo for this latest stint in the hospital. So far, not much as far as side effects except for some bad nausea, but as always, these things seem to hit me after the chemo ends rather than during. With a 3 day treatment, it's hard to tell when the side effects will come so we'll just have to wait and see. I made it through the last round of chemo with pretty much no down side, which in turn gave us a bad result, so I'm almost hoping I get hit really hard by this one. I do have to admit that there was a day, Wednesdayday of this week to be exact, that I got completely knocked on my ass. I had a headache that my medication just couldn't touch, and as a result wouldn't go away from morning until very late at night. On that same day, I had the worst nausea I've had to endure since I got in here, so both of those things together made it so bad that I seriously couldn't move for about 16 hours straight. And I'm serious when I say I couldn't move. I couldn't even talk it was so bad. Unfortunately that was after we had already received our bad news that round one didn't work, so the pain had no upside.

Round two is pretty close to round one with the exception of adding in one component called Mitoxantrone which turns the cocktail's name to CLAG-M as opposed to simply CLAG which is what the last mixture of chemo was. The CLAG alone is a combination of Cladorbine and Cytarabine. If you remember from my last message, the M is the component which was supposed to add some risk to me heart, but they have a way of monitoring pretty closely the effects this medicine is having on my heart. Our biggest worry is obviously that this round doesn't throw me into remission either. Until then we'll be thinking positively and preparing for the best news possible. And we have reason to. This round of chemo is supposed to be pretty heavy stuff. They have assured me that they took this as far as possible from a strength perspective, without taking on too much risk. The problem is that my body is starting to educate itself on how to deal with chemotherapy, so the effect it had on my body the first time we went through this is different compared to what the effect is now. This doesn't mean it's not going to work by any means, only that it's different. I really do feel we are going to get through this round with a favorable result, if not then we move on to the next set of options.

From a timing perspective, we will be doing another bone marrow biopsy in about 12 days from now, with results following roughly 3 days later. When the results come back in our favor, they want to move as quickly as possible to transplant. If the results are less than that, then we move on to other options. Bottom line is that we will know the next course of action in a couple of weeks. The world we live in right? We want our information and we want it now. Isn't that a song?

As difficult as that last batch of news was, Evey and I are taking it all in stride and concentrating on making this current round as successful as possible. We had a really nice turkey dinner last night brought from my Dad compliments of my Aunt and Uncle Josie and Hans. The food was a great reminder of what's waiting for us on the other side of this illness. Today we get round two with my Mother in Law Sonia coming down with leftovers from her and her brother's cooking yesterday. Both of these women and Evey's Uncle are incredible cooks, so to say we are lucky to have them hooking us up with Thanksgiving dinners would be an understatement. I personally can't indulge in the salads which kind of sucks, but everything else that's cooked is fair game, and fortunately they are coming during a time where my appetite is ok so I actually get to enjoy it.

We're making the most of it and actually finding time to have some fun and laugh. We continue to drain our doctors of information about current state condition and treatment and what lies ahead, so I guess my point is, we are definitely making the most of our time here. And above all else, Evey and I get to spend time with each other. When we're not fighting over the TV remote, we're walking the halls of the hospital spending some good time together. The biggest difference between here and home is that when we walk, we don't have Floyd at the end of a leash. Anyway, now I'm bumming myself out. No more about Floyd. That's about it anyway. You've got the latest medical update and also a peek into our hospital lives. As I said before, we are making the most of it and even starting to laugh a bit. It's really the only way we are going to get through it. Well that, and of course the love and support we get from you all on a daily basis. Please continue to send it our way in whatever form you feel fit. Take great care of yourselves and we'll catch up soon.

Evey and Kurt

11/24/10

Hi everyone, yes, I changed the title once again. Instead of doing chemo + and all of that, we figured it would just be easier to go by dates. The main reason is because Evey and I just got the results from the bone marrow biopsy done on Monday, and the news in not what we were hoping for. They unfortunately were able to find traces of cancer cells in the results so back to square one we go. We've been here before so the shock is not as bad as you would think, but of course it's a let down. It took three rounds after my first diagnosis to kick me into remission, so again, we've been here before and we know how to handle it. We'll buckle down as we always do and get through this together.

As far as next steps are concerned, my oncologist will be working on that tonight. Due to the numerous complications from my last go 'round, they have to be careful of the chemo cocktail they give me. My heart is the biggest consideration due to my Atrial Flutter, but I'm confident he'll take the night to due what doctors due in this situation and come up with the best possible mixture of hell to put me through, and ultimitely get me back to remission. I have a feeling he was a bit too gun shy on this last one,which is why I came through it so easily and in the end had a bad result. If I have anything to say about it that will not happen again. If it were my choice I would have him put me through the biggest and baddest mixture yet, but I'm not the doctor and and I'm sure there are hundred other things that need to be considered in this. Regardless, what we just went though in round one didn't work, so on we move to round two. And in round two, we are gong to unleash a billion little Manny Pacquiao cells that are going to run through my body and destroy any Leukemia cells in their path.

As the information comes to us, updates will be coming out to you all. We again can't thank you enough for the love and support you keep throwing our way and I promise you we will keep our heads up, stay strong and be ready for what's coming next. So I've got Leukemia. There are people out there with much larger problems than that and have a fraction of the support system Evey and I have. Given all circumstances, we are very lucky to have you all in our corner, and we will get through this.

-Evey and Kurt

Chemo + Day 13

Hi everyone, greetings from the San Diego box, or at least that's what I'm calling my hospital room as of late. Not to worry, I'm not as distraught now as I was when I wrote my last update, but I'm not going to lie, it's still seems very small in here. Anyway, the adjustment period seemed to take much longer for me this time compared to stints in the past, but home is where the heart is, so we'll just have to call this home for now.

It's been a handful of days since my last upodate, so there are a few things I can fill you in on. The first is that I have seemed to have had an internal reaction to some medication which has caused me to break out into a pretty bad rash. I'd say a good 70% of my body is a very bright shade of red. And it's not the non-ichy kind either. It's unfortunately quite the contrary. It is extrememly uncomfortable and once you start scratching somewhere, you're screwed. You won't stop until you literally get so mad at yourself that you yell out a swear word and make yourself stop. And just as you're doing that, another little itch pops up somehere and away you go. Oh yes, it's quite a good time, especially when you have visitors. To treat it, I have to rub a cream all over the red area a couple of times a day. If it actually did something, I might be a little more excited about that process, but it really does very little except take time and waste medicine. They took a biopsy of the rash by taking a chunk out of my shoulder and sending it to the lab. The results came back saying it was a reaction to one of the many medicinnes I'm on. Unfortunately they can't pinpoint which one so we have to deal with this by way of trial and error, but I have so many that by the time we single out which medecine it actually is, I'll be past the 5 years in remission milestone and all will be good. That was obviously a joke, but regardless of all that, we'll keep trying until it does go away by itelf which hopefully is sooner rather than later.. Until then, I'll just have to live with it.

So that's the rash story. In addition to the rash, I started running a fever the other night. It started out at 102.5 and held pretty firm at that mark for a solid night. They attribute the fever to an internal infection dealing with my urinary or possibly my intestinal tract. Again, these things are very difficult to pinpoint, but after taking some blood and urine cutltures, that's what showed up. This is the type of thing that happens just about every day in every one of us, but being that my white blood cell count is still at 0, I have no immune system to fight it off. In a normal situation, this gets killed the second it pops it's head up from whatever hole it came from, but in my case it utrns into something. Luckily for me the fever only lasted for one day and night, and inside of 48 hours it was gone. My doctors did a great job of finding out what it was early enough, and treating it with the right stuff, so even in my very compromised immune system, it really had nowhere to run. The anti-biotics they put me on in response to the threat took care of it.

This turned out to be quite a scare because if you know anything about my past, you know that infections are what brought this house of cards crashing down when I first relapsed in April. To make matters even worse, at the time of the fever, I had a really intense headache which just wouldn't go away, so I asked them to hit me with a 35mg liquid dose of Dilaudid, which is a pain killer. It is no joke when I tell you that that dosage would literally kill a huge percentage of the population if they were in a situation where they were forced to take it. Not bragging by any means and is not something I am very proud of. It's really just a reflection of how high my tolerance for pain medication has grown. Anyway, back to the story. When they hit me with this monster dose to knock the headache out of my system, it did just that. Only it also caused my oxygen intake to plummet, forcing them to make me wear the oxygen intake tubes through my nose. It also dropped my blood pressure to dangerously low levels. I think the lowest it had dropped during that few hour period of time was 88/50. As I said, this episode lasted for only a few hours, but as you could imagine, it had us pretty worried and thinking of the past, which I never want to revisit ever again. It was a great relief to see those numbers start to climb soon after they dropped that fast. Before Evey and I went to sleep that night, the oxygen mask was off and my blood pressure was back to normal. Can you say, Huge sigh of relief? So that was Friday night of this week to give you a reference point in time.

Yesterday, (Saturday) was pretty uneventful except for still having to deal with this skin rash. It actually looked like it was backing off really good on Friday morning, but that was just a tease. It came back in a big way so no luck on this thing going away on it's own nice and early. That's ok, as long as my wife still kisses me, I have nothing to worry about.

So as I said earlier, my blood counts are still in the basement which is a good thing. They need to be there for at least a little while which implies the chemotherapy is doing it's job of whipping everything out. I'm scheduled to have a bone marrow biopsy done tomorrow morning which would be day 14. That needs to come back with a favorable result meaning negative...no cancer cells detectable. Given that my counts are so low still, it all looks really good and it should come back that way. The only thing that scares me is that I made it through this round of chemo with practically zero side effects. I know this is something I should normally be jumping for joy over, but it worries the hell out of me. That little pessemistic nodule in the back of my brain is telling me that maybe I feel so good because the chemo didn't work. The bood counts say different and those are the cold hard facts, but my body is making me think differently. There have been a total of two mornings where I didn't feel well. Outside of that, and the few side effects I mentioned earlier, I have yet to throw up once, or even lose my appetite...at all. To counter that arguement, they are pumping me with all sorts of medications to quell the chemo side effects, so maybe my body is just responding to those meds very well? I don't know. All I do know is that I feel way too good to have gone through a 5 day round of high dose chemotherapy. There is no hiding from the truth which will hopefully be told on Wednesday of this week. If they in fact do get me in for the biopsy early tomorrow morning, there is a good chance that the pathology lab can turn around the results by the end of the day on Wednesday. Otherwise we wait until next week sometime. Until then, I just have to find a way to tell that pessemistic nodule in my head to shut the hell up. Only good thoughts until the facts come out with answers.

So that's about it. Hopefully my next message out to all of you will report that this rash is gone, the biopsy results came back negative with zero complications, and my white cells have started to grow. Yes, I am a greedy bastard, but when it comes to things like this, would you expect anything different? I thought not. Keep sending all of your love and supoort, and we'll keep receiving it. You guys are the best and I wish you only knew how much of a huge part you have played in keeping me alive. With that said, be well and take good care of yourselves, another update to follow shortly.

Love,

-Evey and Kurt

Chemo + Day 9

So De Ja Vu has nothing on this situation. I' have been in the hospital now for a total of 10 days, 9 since I started chemo, and nothing has come back to me as far as getting used to anything. Every day I wake up it's like waking up in a nightmare. I don't know why, but I seem to remember being in here before and being ok with the situation. You know what I mean...this is my situation so I just have to buckle down and deal with it. Well, not this time. Like I said, I wake up every morning, close my eyes and just wish I wasn't here. Yeah, it's that bad. I don't want to say there was novelty attached to it last time, but there is clearly a change from last time to this time, and it has misery written all over it. I'll hopefully at some point settle in and get used to it, but for now it is a daily battle to keep my head up and just take the situation for what it is. OK, now I feel like I'm rambling so let me stop, I apologize for that.

9 days since chemo began, 4 since it stopped and I'm feeling pretty lucky to say that I seem to have gotten through it pretty easy. I have had some difficult mornings where food looks absolutely disgusting, but no throwing up which I am so happy about. Throwing up is pretty much the worst it can get for me. For some reason, I just can't handle it so I have been lucky to not have to deal with it. This is ususally how it goes for me though. I get through the chemo pretty good but then a sneak attack will hit me a couple of weeks later and down I'll go. None of that really matters at this point. I just want to get the hell out of here and get back to my house, my bed, my dog and my life. Living in a 15x20 foot room for a long period of time is not conducive to good mental health. With that, I'll stop complaining about my living conditions. You've heard it all before anyway right?

One thing that hasn't changed is the morning visit by my full doctor team and the tag along group of about 6 students. It gets pretty cramped in here when Evey and I are trying to wake up and in walks 8-10 people asking how you are feeling, looking to see if you're breathing right, feeling your ankles to see if they are swollen, looking at your tubing, checking the pain and nausea scales...it's just nonstop nonsense and is every morning. The good part about this part of the day is that I get an update on my cancer situation and an idea of what's coming up. As of this morning, my white cell counts are at 0 which is exactly where they need to be. At this point, I need to wait it out like always and let the chemo do it's work, which is what it is doing. In about a week or so they will do another bone marrow biopsy and see if I am still in remission. Those results will determine us going straight to bone marrow transplant or waiting it out, letting my cell count situation strengthen.

So here is the breakdown: In about 5 days we will do a bone marrow biopsy. Assuming my body has reacted favorably to the treatment and the biopsy comes back negative, we will start the process for transplantation a couple of weeks from now. The actual transplant date will be a bit less than 3 weeks from now. My donor has been a superstar as always and has pretty much opened up his schedule to whatever we need. The other thing I am trying to do is get a few days home before the transplant. Not sure if the doc is going to go for that or not, we shall see.

So that's pretty much it for now. Same story, different dates. It seems like this is becoming a recurring nightmare, but third time's a charm and that's how we're treating it. Yes, we're in a pretty crappy place right now but it's nowhere Evey and I haven't been before . Luckily for me just negotiated being able to take a quick walk outside of my floor and into the lobby. Doesn't sound like much but trust me, when you're couped up like this, every step outside helps. I just need to get these tubes out of my arm and sleep in my own bed...then and only then will I start to feel better. Take care everyone and thanks for everything. We'll keep you posted.

Chemo Day 0

Chemo Day 0 is a new title saying that since we found out that I relapsed on Friday, our first day of chemo will be tonight. Going forward the days will increase until we get to transplant at which the title will change to simplay Day 0 on transplant day and will again increase each day by 1. Ok so enough of the house keeping stuff.

As I mentioned above, Evey and I found out I relapsed on Friday while I was at the dentist. I know what you're thinking. How could the dentist get any worse? Well I guess I just answered that question. Anyway, I'm at the dentist in the waiting room when my phone rings. I knew who it was so I answered it and as soon as I heard him say hello, I knew what the results were. The tough part was having to cancel a trip to Cabo that Evey and I had planned for a wedding for one of her best friends. We were both looking forward to it and I know how important it was for Evey to be there, so it really killed me to have to cancel it. I begged her still to go, but just as a good wife would do, she absolutely refused and said she would stay back with me.

We got here last night, moved our stuff in and quickly got used to the fact that this would be our home for at least the next few months. So as I sit here now and type this message, I am about an hour away from yet another round of high dose chemotherapy, I have my dinner sitting in front of me for which I have already lost my appetite and one of the pumps won't stop beeping. How can anyone complain about life when they have so many good things going for them at one time?

So that's it for now. Chemo starts tonight and will go for 5 days. At that point we wait for a few weeks to let the poison do what it is supposed to do and we do another bone marrow biopsy. Then based on the results, our next month is decided. Positive results mean we move on to transplant and negative results will just end up slowing things drastically down. This all happened so fast so it will take some getting used to. As always, we will do what we have learned to do best which is power through this stuff as best as we can and punch out through the other side. As always, thanks for reading and we'll do our best to keep you updated.

10-20-10

Hi everyone,

been a while hasn't it? Not much has gone on in the past month, but I do have some things to update you on. To start out, I'm feeling pretty well lately. Since my last update, it has pretty much been smooth sailing with the exception of about a week stretch. This was an absolutely horrible time for me. I couldn't eat, drink, or pretty much move. It was seriously worse than some of my bouts of crap after chemo. I don't know where it came from, how I got it or how it went away, but it was pretty damn close to how I felt when I had Echoli in Costa Rica. It started out on a Tuesday morning a couple of weeks ago, and I really just felt bad all around. I had a small breakfast and took Floyd out. From there it progressively got worse and worse, to the point where I didn't want to move, and food and drink sounded just aweful. Aside from a few bites of some fruit and a peanut butter and jelly sandwich, I had nothing to eat that entire time. It got so bad that I had to leave a good friend's wedding early. I made it through the ceremony, but had to pull the shoot after that and miss the reception. I felt terrible about it but just couldn't do it, so I left. Anyway, that was the Sunday following the Tuesday when it started. Every night that week I would go to sleep prayng that this terrible feeling would go away, then I would wake up the next morning feeling worse than the night before. It finally went away the next Tuesday, so for 7 full days I was in pure hell. Luckily enough for me, that as been pretty much it when it comes to feeling bad. I can only hope that I never have to go through that again, but that is just dreaming.

The other update I have is the results I got from the latest catscan on my lungs. Good news!!! The surgeon was successfull in getting everything out he was supposed to. There are still some specks on the lung, but those are of no consequence. I'm pretty much good to go and in recovery mode. I still have to do bags of antibiotics through IV every now and then, but that is really just to make sure that if there is any infection hiding somewhere, we'll kill it. Now it's all about staying active and trying to get that lung back into shape. I have tried to run a few times, but that is just too much right now. After a quarter of a mile or so, I am completely out of breath, almost to the point where I feel like I'm suffocating. My plan is to take it slow and mellow. I want to give the stationary bike a try, and maybe some light weights, and if that works out, I can start to work up from there...we shall see.

My Atrial Flutter has been kept under control pretty well by the medications I'm on. There have been a few times where I've take the medication late, and my heart popped into that 250 beats a minute mode. Even though the doctors have told me that it's not anything to really worry about, that is pretty scary. All I can say is the heart is an amazing thing for it to be able to take that many beats per minute, and have it not turn into a full blown heart attack. To fix it, they will probably do the cathetor thing where they put it in my hip and run it all the way up to the heart. When it's there, it has a burning device at the end of the tube that burns the part of the upper heart that causing the problem. Then they pull the tube out and I'm good to go. Pretty crazy that they can do that as an out patient procedure. I don't know, to me that sounds pretty gnarley but as I said, it's a pretty easy thing for them to do and it should fix the flutter permanently.

Finally, my bone marrow transplant is scheduled for the end of November. We don't have an exact date yet, but it will be right around that time. It obviously depends on when my donor has time. When our coordinators figure all of that out, I'll be a happy guy. I know it's right around the corner which is a very good feeling. This pneumonia has ruined enough of my life, so it's really good knowing that we're finally past it and done with that horrible chapter. Now we can move on to the important stuff. Soon enough, I'll be on the road to recovery and closer to getting my life back. I just want to get back to work and start exercising again...that is pretty much it and trust me, that time cannot come soon enough.

That's it everyone. I hope you are all doing well and I thank you once again for your support, love and prayers. Keep it all coming because I use every ounce of it. Take care, be well and make sure you have some sort of fun every day.

-Kurt

9-17-2010

So, I'm not sure how much detail I am going to get into, but a lot has happened since my last message. I'll try to keep it short and sweet, but that may be a little tough given the events of the last few weeks.

Anyway, let me start with the surgery, which finally came on Sept 23rd. I could not have been happier going in, thinking this would be the end of my bout with pneumonia and the start of my new bone marrow transplant journey. All of that was correct, but it was a painful experience to say the least. So the 23rd came and all was good. I was in pre-op getting set up with all of the IV's, as well as getting hooked up with an epidural. I guess this is common for the surgery I was about to have done. In fact, the doctor pulled my family aside and said what he was about to do to me was the most painful procedure you could do to anyone. So with that said, the epidural is a must right??? Wrong. They spent 2 hours trying to find a spot in my spine that worked. For 2 hours I was draped over a pillow with my back arched as much as it could be arched, while they picked and poked along my spine to try to find a spot that worked. Well, unfortunately they never found one. So because they had already spent two hours trying to do this, we were way behind, so the surgeon and his team decided it was time to go forward with the surgery. My last memory was asking the epidural guy if I was going to be in a world of hurt because of they couldn't find a spot. He said there were other ways of dealing with the pain and i'll be fine. Well, that could not have been more false. When they were done fileting my side open and cutting out my lung, I came out of my sleep. Please believe me when I tell you I was in the worst pain you could ever imagine. They had no idea how high my tolerance for pain medication was, so they were giving me doses that were a fraction of what they should have been. It finally took them about 5 hours to get it to a point where I could tolerate it. I forced myself to go to sleep and the nightmare was over.

When I woke up the next day, I was still in pain, but not nearly as much as the night before and they seemed to have the right pain med cocktail which helped. Ha, my thoughts of coming out of the surgery, floating on a pain med cloud could not have been further from reality. In truth, I never, ever comfortable from the moment I came out of surgery, to the time I was released 8 days later. It was a very rough road but the pain is now pretty much gone and now all I am dealing with is tightness and some soreness. Nothing I would consider as pain.

So I was released from the hospital post surgery on September 1st. At that point everything seemed fine. I was taking things slow but still being active like the doctors told me. The problem now was that I was getting really light headed at times, and for the most part, felt like crap. I crumbled to the floor a couple of times and almost completely passed out a few times as well. During these episodes my heart would race faster than I had ever felt, and you could see my heart almost jumping out of my chest. Finally, on Friday September 10th, my dad and I drove down to San Diego for a quick doctor visit to see what the hell was going on. As with all doctor visits, the first thing they do is check blood pressure, heart rate and some other vitals. Well, my heart rate was 246 beats per minute. Inside of 10 minutes, I was surrounded by 15 medics, a few doctors with two fire trucks and an ambulance out front. I have been through a lot in the last couple of years, but I have never seen a response like this. It was crazy, but I guess it was necessary. They immediately admitted me to the hospital and started trying to figure things out. Turns out I have whats called an Atrial Flutter which is basically a condition where my heart beats out of rhythm, and can sometimes beat uncontrollably like what was happening with me. My heart wasn't beating at that crazy pace all of the time. It really only happened a few times a day, but it was serious none the less.

To treat it they almost shocked my heart back into the right pace. It's normal to do this for an A Flutter, but it can sometimes also be handled by medication. Luckily for me, the medication went in first and my heart responded. So as of now, my heart is beating at a normal pace and all seems good. The meds I'm on are what are making my heart beat right, but I still have this A Flutter. There is a good chance that my heart will flip back into it's normal, natural rhythm, but if not, then they will probably have to shock me. I was in the hospital this time for 4 days while they kept me there for close observation. During that time, my heart hit the 250 range a few times, but after the process of elimination, they found the right meds to normalize my heart rate. I can only hope that my heart does pop itself back into rhythm, because getting shocked by those paddles on my chest does not sound like a good time.

Since my release on Monday, I have been feeling great and my heart has been beating fine. I was at the doctor yesterday and they said everything looked good as well. My blood counts look great and my heart sounded normal, so as of now, all is good.

As far as the future holds, they have to let me lung heal for a few more weeks before they can really go in the and determine if the infection is gone. Until then, it's walking every day and taking the right meds which will hopefully clean anything out that was hanging around. I'm still on the IV every other day, but like I said, it's all in an effort to clean everything out, so I'll live with it. Nothing can really be done on the bone marrow transplant side until we figure out what is going on with the lung, but if everything goes according to plan, we are targeting very late November/early December for the transplant. A lot has to happen between now and then to make that a reality, but it feels great to even be discussing it again. Sorry for the extra long update, but as you can see, a lot has happened. Take care everyone and be well.

8-19-2010

Hi everyone, there really isn't much to update you on except that my surgery got moved from today to Monday. There were some emergency transplants that came in so everyone got bumped. It was a tough pill to swallow at first, but as they days have gone by, my mod has gotten better. To make matters worde, the location was moved as well. Instead of Thornton hospital, it got moved to Hillcrest which is bit further down the freeway. I am hoping it is as good as Thornton.

As far as the surgery goes, they will be cutting a 6 inch incision about 3 inched below my armpit. Then they will spread open my ribs and go in and cut out the infected part of the lung. The whole thing shouldn't take longer than 2 hours. All in all, I should be in the hospiatl for 5-7 days, with 4-6 weeks of recovery at home to follow. They are expecting me to be in a good amount of pain due to the whole rib spreading thing, but that's what good meds are for right. I really don't think anything could be worse than the crap I had to deal with the last time I was in the hospital. We shall see.

Outside of that, I've been feeling well and waiting impatiently for Monday. Evey and I go out just about every day for a good 3-5 mile walk with Floyd, which has been very good for my lung strength. I feel as though I'm going into surgery as strong as can be, so now it's up to the doctors. I just hope they go in there and cut out all of the infection. It is going to be a very difficult discussion for all parties involved if they tell me there is still some infection. OK, negative thoughts out... I just want to get past the surgery, recover as quickly as possible and move on to the bone marroe transplant. Then my friends, I start to get my life back and i am once again a happy boy. Take care everyone and enjoy the summer, especially since it just started a few days ago. I'll send out another update soon after the surgery.

***Please Read***

Hi everyone, I bet you're wondering why there is a new message so soon after my last one. Well I won't keep you in suspence. I don't have much to update you on except that the communication vehicle for these messages will be changing. Unfortunately, there are some companies out there blocking this site from their employee's use. As a result, there are a bunch of people who want to follow along this story who now can't so I've decided to move it. It's unfortunate because this Blog site was working well until now...oh well, all good things must come to an end.

So out goes Blogspot, in comes Facebook. This is the first I have ever used Facebook so it may take me a while to get it figured out. I don't know if you have to be my "friend" or not to read my postings, but I'll try to make sure it's open to everyone. It seems Facebook is the site that just about everyone has access to and is most likely already a member of, so this should be pretty painless.

If I'm wrong and you feel this is still the best way to get these messages out, go ahead and let me know, I'll still be checking this site. But I also want to know the other side. If Facebook is the best way to go, then I want to know that too. Evey helped me set up my Facebook page the other night so it should be ready to go, but I still have to learn how to use it for what I want to do so give me some time. Hopefully this is good news for some of you and is better for the this group as a whole, we'll see.

No changes to the lung surgery schedule or anything else coming up. I'm just waiting patiently as always for that day to come. Thanks everyone, and I'm serious about letting me know your thoughts about this change. I can very easily not do it as well. Take care and have some fun. Maybe we'll run into each other at the US Open this weekend in HB...who knows?

Day + ^%$#

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 + %^$#@

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 - %#@!&

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 - %#@!&

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 - %#@!&

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 @%$#

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 - %&&*!!

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 - %@!!!

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

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 - %&*!!

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 - %&^*!

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 - %@!!!

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 @%$#

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 - %@&

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...