Weird Time

Okay, this will probably be my last post for a while. The schedule remains the same. (The big thing over me lets the tech see if I'm in the right place and get's removed during the radiation.)

Weekend

I'm having a hard time remembering things in sequence right now. I'm really cloudy about the whole weekend. I got high dose chemotherapy over the weekend, but I really didn't have any problems. They warned me that it was 10 times as strong as the Cytoxin I've had before, but I never had nausea (probably from the anti-nausea medication). I vomited twice though. Apparently I also got a CT Scan on Sunday, but I don't remember getting it. It showed that the fluid got worst, but clinically I was getting better. This weird situation is what my doctors are dealing with right now.

Over the past three years and through the 4 different hospitals I've been treated at, I've seen my fair share of IV pumps. The ones here at Brigham and Women's own all. They are awesome. As an Industrial Design major, I always thought that I could do medical design, because I've spent so much time, and seen so much medical equipment. I know my way around hospital stays. But hospital equipment has always been boring to me. It seems like everything has been made and improved. I felt like hospital equipment design is saturated (which it probably is). The system they use here to administer everything actually excites me. Although you wear a boring wristband with a bar code, but phlebotomy, nurses, or lab techs have these coolio scanners that scan your wristband. The nurses' scanners are small because they work with laptops, but the phlebotomy/lab techs have pen tablet screen scanners. They also walk around with miniature printers that print off the stickers which allows them to label all the blood draws (a ton). Awesome. All the other hospitals use the pen and paper method. Prehistoric. What's really cool is that the IV pumps also get the information. They tell you what medication you are getting, and not just how long. Once a medication is done and all that's running is IV fluid, it will tell you that. Soo awesome... One pump can have others stack up on each side like LEGOS!!! genius... sorry I'm getting excited over IV pumps...I've do remember having some really vivid dreams over the weekend. I think I was in and out of sleep a lot. My catheter has been really tender too. So I've been on pain meds for that. What really is annoying is that the doctors want me to drink less water and more juices and sodas. When do they tell you to drink less water? My sodium levels were low, but I hate the aftertaste of everything but water. Why? Because it has none. They liked the fact that I was drinking a lot though, but I wish it was water. I love water.

Total Body Radiation

This week I've been getting total body radiation twice a day. It tires me out. I'm tired right now as I'm typing this. My jaw feels swollen too. I lie on this bed and they have high-energy x-ray beams zap me above and below for 20 minutes. The tech is cool, but the music choice while I wait is horrible. Most people will probably disagree, but I don't feel like listening to 'NOW! That's What I Call Music', because it isn't. I'd rather listen to "Kidz Bop", because at least I could laugh at little kids renditions of pop songs. I tried to burn some Funk CD to get that radiation all funky, stinky, and nasty, but I couldn't get a good burn. I'll put the funk in it though, you just wait.

Ahead

So the CT scan showed that there is more fluid, even though I look and feel better. I also have had less fevers, even none. The fluid really bothers all the doctors though (BMT, ID, & Lung). Last night, really late, the attending Infectious Disease doctor explained that they really needed to know what disease they were dealing with. The last bronchoscopy didn't yield any results, just as the KUMed one didn't. It was his opinion that they biopsy the lung where the fluid is, so they can make sure what they were dealing with. There were two methods he thought were best. One would be sticking a needle in from the outside and extracting the tissue, as guided by a CT maching. The other method was another bronchoscopy, but this time they'd have forceps that run through the tube to obtain the tissue. With the CT scan, they saw that the fluid was close enough to the airway that they could get a biopsy close to the site. The most effective method, one that none of them prefered to do, would be to do an open chest surgery. Yeeouch! I know Dr. Antin didn't want to do anymore invasive procedures, because of the risk of another lung collapse. But today all the doctors agreed that tomorrow was the narrow window of opportunity to figure out what they are dealing with. And by all doctors, I mean ALL doctors. Today I had like 8 in my room talking and examining me at once. I had to defend myself against a three person, man-to-man stethoscope offense. They really wanted to listen to me.
I found out there are weekly visits from dietitians, physical therapists, dentists, and message therapists. The massage therapist that came in today name was Bambi. My mom and her figured out that each other were Filipinos and then the crazy talk began immediately. I have a friend that thinks Tagalog (language of the Philippines), sounds like someone saying 'peanut butter' over and over, really fast. You should try saying this out loud!

So, tomorrow I'm getting another bronch. Hopefully they can figure out what is growing in my lung, even though I feel better. Damn you 'ninja bug'! Because of the procedure, I'm only getting full body radiation once tomorrow, and twice on Thursday. Honestly, I'm nervous about having pneumonia and going through with this transplant. The BMT doctors here have done hundreds of transplants, and seem confident that they can succeed again. That makes me feel better, but I never have full peace of mind - something I'm used to.

Well, I hear another bald patient next door either playing 'Marvel vs. Capcom 2' or a 'Street Fighter Alpha' game and my hands are getting a little shaky. My palms are sweaty and itching at the same time. Ooooo I'm tempted to owned someone hard in either one of those games.

For real though, this is probably my last post for a while. Thank you to everyone who has supported me - prayers, thoughts, talks, and visits. Thank you, I'll be back.