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I did pretty well today. After I get my Neupogen shot, I pick up a Wawa coffee and then sit in my office and sip it. After a while, I started to feel a little better and stayed until about 4:30 pm. As I came home, I was started to fade quite a bit.
I had some supper and then forced myself off the sofa and did my 1-mile walk. It was a slow walk. I had felt better last night.
So far, I have not had a response from my fax. I was disappointed. I may resend it again tomorrow. The will want to do a white cell count. I frankly don’t care what my white cell count is on Friday. I’m sure it will be fine. I only care what it will be on Monday.
I’m not sure what my response will be if the refuse my request. I don’t know if I’ll ask them, tongue in cheek, if there is a money-back guarantee. Of if, I should have a more forceful response and say, “If my white cell count is too low, it’s on your head.” I think the later is a bit strong, even if that’s how I feel.
I wouldn’t be surprised if my request rubbed them the wrong way. They may be thinking to themselves, “Who does he think he is dictating treatment. He’s not a medical person.” But I could be reading more into it than there is. When there is no data, all one can conclude is that there is not data.
My morning temperature was 99.5 degrees this morning. In my last go-round with a low white cell count, I had over a week of over 99 degree morning temperatures. I have begun to wonder if it was from the Neupogen, but the nurse didn’t think so. I have just reviewed the effects page, and a temperature is a possibility.
I’m tired now. I’m heading to bed.
Posted by The Vorlon at June 15, 2006 8:54 PMI don't think you should be second-guessing your fax to the oncologist. You were very polite and as I said, you added some humor, and your request is more than fair. I do not believe it will rub them the wrong way or think "what does he know, he's not a medical person." You're a very responsible patient that is in the fight of his life, and if you don't deserve to be a player in this, I can't imagine who would be.
Relax, and trust your good judgment. It just might surprise you as to their response. I am so hoping you can get the booster on Sunday.
Posted by: Ruth Berlien at June 15, 2006 9:47 PMRuth is right, you have all the right in the world to understand exactly what is happening and what ALL of your options are. I do think that they are not sure how to answer you right now. They know that you are understandably upset, but I think that your basic premise is incorrect. An infection causes the white blood cell count to rise, not lower. When you had the 20,400 white count your body was fighting off something. The chemo is what knocks down your white cell count. Did they switch to from Neulasta to Neupogen because of the particular chemo drugs they are giving you? Maybe the neulasta doesn't agree with it? I'm thinking maybe I missed something here, but here's what I'm thinking (for what it's worth). . . I do know that you have to wait 24 hours for a neulasta shot after chemo . . . what I'm wondering is, is there a specific timeframe between the time you get the shot and the time you have the chemo? i.e., could you get a Neulasta shot today and then go for the chemo on Monday? It just seems to me that the Neulasta did a better job keeping your white blood cell count up than the Neupogen is doing now. If that is not possible, there must be some other options that have not been brought to the table. Like I said, just my thoughts, for what they're worth.
Always thinking of you both.
Posted by: Nora at June 16, 2006 7:53 AMTed, I think Nora brings up some good questions for you to talk to the doctors about. The bottom line is that you are the paying client and they are not perfect. You have every right to bring up anything that you want to talk about to them.