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.