September 15, 2006

September 15 Final Update

I had my chemo this morning and it took about five hours. It was a hour after I got there that they finally starting poisoning me. All my blood counts looked good.

While I was being poisoned I showed the nurses the following data.

Week 1, on Thursday, WBC = 4,900, received treatment
Week 2, received Neupogen Monday, Tuesday & Wednesday; On Thursday WBC = 20,900, received treatment, Friday received Neulasta shot
Week 3, Rest
Week 4, on Thursday, WBC = 14,000, received treatment
Week 5, received Neupogen Monday, Tuesday & Wednesday; On Thursday WBC = 1,800, treatment denied due to low WBC, got Neupogen Friday, Saturday, Sunday
Week 6, Received Neupoen on Monday, on Tuesday WBC = 11,500, received treatment, Wednesday received Neulasta shot.
Week 7, Rest, check WBC = 11,400
Week 8, on Friday (Today), WBC = 8,500, received treatment.

WBC is White Blood Cell count
Neupogen is given multiple days and supposedly only stimulates the white cells for 24 hours
Neulasta is given less frequently and supposedly stimulate the white cell for two weeks.

We discussed it. It took them a few minutes to digest what I have pondered for some time. They went back and reviewed their charts to confirm my numbers.

They said the didn’t want to OVER stimulate me and I understand that to a point. We agreed that next week I‘d get Neupogen Monday, Tuesday, Wednesday & Thursdays and then come in on Friday for treatment.

Asked if the could give me a money back guarantee. They declined. I reminded them how I really dislike changing the schedule and they assured me they were well aware of my dislike to failure.

I find the data puzzling as you’ll notice that on Week 4 I had a much higher WBC count than week 1, yet my WBC on Week 5 was much lower than Week 2. In both cases my treatment schedule was identical.

In retrospect I wonder how many people would have done what I did to ensure I got the treatment I wanted.

As I like to say, one has to stay on top of medical people. I consider myself the manager of a bunch of techies. Just because I don’t have their knowledge doesn’t mean I can manage them. I just need to ask tough enough questions that I can be confident they’re doing as close to the right thing as possible. I say as close as possible because no one knows the EXACT right thing to do. As I like to say, they throw things against the wall and see what sticks.

My analysis this morning was easy as it simply involved numbers and I just had to present them is such a way that they understood my concerns and could respond to them.

While I was in the treatment room, one of the customers started getting a very bad reaction to the poison they were dripping through him. The quickly called 911 and the EMT’s arrived and carted him off.

I notice he had a mediport. I spoke to one of the nurses and mentioned that he obviously had been poison before and I was surprised he had a bad reaction. She said it was the first time on this particular chemical.

The nurse said he called later in the day. He was home and doing well.

In Schneider’s book, one of his nurses said that a bad reaction to the chemo could indicate it would be more effective against the parasite.

That’s about it for today; I guess it’s been a long post. But now I’m ready for bed. I get to sleep in tomorrow and struggle a bit with mild nausea.

Posted by The Vorlon at September 15, 2006 10:16 PM

I think you are probably doing what few dare to do. You question the doctors and nurses. I totally agree that you are the manager of the team.

Posted by: reborrell at September 16, 2006 9:39 AM