Day 17

It still looks like I will be paroled tomorrow. I should be moving out to the Rotary House hotel across the street about noon tomorrow.

Not surprisingly, the white counts slipped a little more, but the rate of descent is slowing. They may give me another Neupogen shot tomorrow before I get out. But that depends on what the counts look like early in the morning.

The reds continue to inch up slowly, so that's good. And the platelets look pretty good at 154 today, which actually is in the normal range, although barely.

Cathy asked in the comments how I keep up with all this data. They give me a printout every morning showing all the gory details. The printout is a full sheet with single spaced data from top to bottom of the page. I always get one from the local oncologist at home, too. Here they graph the various parameters for me, too, which saves me the effort of having to do it on the computer. With the graphs, I can easily see the trend in the white count, hemoglobin, platelets, etc.

I was first diagnosed with CLL in February, 2004 and I've been undergoing chemotherapy since November of that year. So with all the trips to M. D. Anderson, the local oncologist, labs, etc. I have acquired some understanding of what some of this stuff means. They still throw me a curve every so often. But I'm not bashful, so I ask plenty of questions. You would be surprised at the different answers you get from various medical people when they are asked the same question. So you quiz everybody until you get the same definition or story. Lynda has been very active with online research since those early days in 2004, too. With her medical background, the research, and the OJT, we have pieced together a fair understanding of CLL, the various treatments, and likely outcomes.

We have found that doctors and nurses are only human and can and will make mistakes. The one thing that amazes me most about medical care is how much the patient has to "steer the boat." If you are not knowledgable about your disease and interested in your treatment, the results may not be to your liking. You simply cannot blindly leave everything up to the doctors and nurses. You have to ask questions and demand logical answers. If your doctor is offended by this then get a new doctor. It's time that doctors consider their patients as customers. Don't settle for second rate medical care. You have to be in charge of your future.