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.