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.