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.