More on our "interesting" week

Following on Susan's post I thought I would share a few details on how the last couple of days have gone from my perspective. In no particular order, these are some of the feelings/thoughts I've had since Saturday night:

• Nurses are the foot soldiers of the hospital experience. Good ones are awesome and bad ones are truly a nightmare. Like most people that get sick, I'm singing the praises of the nurses I've had take care of me. With today's medical technology, the RNs do a lot of fairly sophisticated tasks with patient facing technology, setting up flow rates on infusors, doing lots of plastic plumbing issues to get everything attached to you, etc. If you don't have good fine motor skills you're not going to be a good nurse. And of course, striking a good balance of professional detachment yet empathy for the patient really affects the quality of care delivered. My experience at Foothills here in Boulder has been really great in this regard. A good group of nurses who I've been really happy to have with me in the trenches.
• The physical state of the hospital matters. This place is really, really nice. If you're going to be stuck in prison, it's easier to tolerate being in a really nice room, art on the walls, slate tile in the bathrooms, balconies on your floor, all private rooms, etc. Well the private room thing is also easy to swing when your immune is compromised. If you're really sick like I was on Saturday night none of this stuff matters to you. But as you get better and watch a storm cruise over the Indian Peaks from your nice window on the west side of the building, it does make the process a bit more bearable. Just hope no one from my insurance company is reading this blog :)
• The human body is a really, really complicated piece of equipment. With all of our medical technology, there are still lots of situations where everyone ends up scratching their heads and saying "Nope, we don't know what's going on." Here's an example from my recent bout of physical craziness. I had a bronchoscopy yesterday. They sedate you, then stick a LONG tube up your nose, down your throat and into your lungs. They inject saline, then suction it out to get lung fluid and stray cells. In my case, they also did a small biopsy to get some tissue for pathology studies. Given the symptoms on the CT chest scan I had Saturday night, the infectious disease doc on my case proposes 4 possible pathogens:
• viral pneumonia
• bacterial pneumonia
• A pneumonitis type of disease named PCP that HIV patients frequently get that is caused by a very common fungus in the environment (think toadstools growing in your lungs. Or athlete's foot.) People with normal immune systems never develop this disease since the fungus is all over and our immune systems are well trained in fighting it. But if you're in day 130 of chemo and your immune system is beat up, this kind of thing could get a foot hold in your lungs. If left untreated it will probably kill you so serious stuff. 
• Another kind of pneumonitis  that is caused by a protozoa. basically another type of bug that does bad stuff in your lungs.
• So as of 4:00 pm this afternoon, the cultures from the pathology are all negative. So this suggests that there's no pathogen causing the problem. This brings us back to the idea of bleomycin toxicity. This causes structural problems in your lung tissue. Your body generally doesn't like it when this kind of thing happens and it rallies white blood cells and inflammatory mechanisms to the site of the damage. Your lung tissue gets inflamed and this is what shows up on the CT scan. But, when they looked at the tissue from the biopsy under the microscope, they didn't see the kind of cellular changes caused by bleo poisoning. But the sampling size is really tiny - It's basically a  needle biopsy done through a really long tube so it would be easy to miss getting physical evidence of this kind of problem even though it's present in your lungs.
• And, let's throw in the Jeopardy-like "daily double" event I had today. After lunch today, in the space of 15 minutes, I lost most of the vision in my right eye to what sounds like a visual migraine. No pain at all but this jaggedy overlay of white light around everything, double images on various structures in the field of view. And in 15 more minutes it was completely gone. All the while, my left eye was fine. So Occam's Razor maybe suggests that big does of antibiotics I had just gotten was the culprit. Or it might be just coincidental; my body at this point is such a train wreck of chemicals that having 1 data point on almost anything can be hard to diagnose.
• So with this kind of symptoms and evidence, here's how the decision process goes:
• We gave you a bunch of stuff to kill pathogens, but we can't find any pathogens. And right after we gave you the last dose of this stuff, you had some crazy reaction. So, since we don't want to hurt you we should just slowly back away from the lab bench that is your body. So no more antibiotics.
• The one thing we have given you that would work in the absence of a pathogen is the prednisone that reduces inflammation caused by bleo toxicity.
• You were really sick when you came in, we gave you stuff, you got better. 
• End result: stop the antibiotiocs, taper the steroids over time.
• And of course, we're basing this all on lack of evidence. So if we're wrong, and you are getting eaten up by some pathogen, you'll get sick again and we'll start this all over. Yeah! Touching the disease elephant in a dark room - again. 

So the good news is that if I have a good night tonight I'll go home in the morning, continue to feel good and get the rest of my treatments on time, minus the bleomycin.

34 days to go. Hopefully they'll be a lot more boring than the last 8 have been!