All right an Update at last...

Finally, I am updating my blog. I have been waiting to update my blog, because we got voice recognition software called Dragon Speaking. I am going to be training some of our doctors on the use of this software. So what better way to start learning it then use it to update my blog.

So where did we leave off? Oh yes, the bone marrow transplant... I have to admit, I'm still percolating on that. I actually met the woman who had the first transplant using Dr. Duvic protocol, which is eight weeks of body radiation and two weeks of chemotherapy. This woman has been doing really well. She recently got a case of graft versus host disease. Thus she has had to return to MDAnderson and is doing photopheresis again, for her GV H. D. she told me that she did not regret at all having had the BMT. I also received e-mails from two people on my news group that had had transplants. They both are very happy that they had the BMT. Keith and I still want to wait until next year, before making a decision. The real problem with this cancer, is that it can come back at any time, unless of course the Lord does a complete healing. I'm still trusting him to do this.

I have been doing really well and making great progress. About three weeks ago, Dr. Duvic took me off nitrogen mustard. This was just in the nick of time, because a company called Ovation had just bought the rights to nitrogen mustard. Apparently they buy medications that are used by very small percentage of the population. If I remember correctly, the New York Times article said that only about 5000 people use nitrogen mustard in the United States. As you may remember my insurance refused to pay for it. In fact I was on the phone with both Medco and ERS which is the conglomerate's in charge of state employees. We were doing a conference call. I had Medco on one line and had ERS on the other line at the same time. Anyway they had been giving me the runaround, saying that Medco should be paying for my nitrogen mustard and Medco was saying that ERS would not pay for it. It came down to the fact that ERS would not pay for the nitrogen mustard. I asked if I could have my doctor write a letter and I was told he wouldn't do any good. Don't you just love state government? I then asked if I could write a letter to my congressmen and the woman replied, will of course this is Texas. And then she corrected herself and said, I mean the United States. But good news when I went to see Duvic. She took one look at me after my second day of photopheresis and said let's start you on light treatment. When the resident came back in. I asked him about nitrogen mustard. And if I could get Dr. Duvic to do something to help pay for the cost of the nitrogen mustard. The resident looked at me with a shocked look and say you can't take nitrogen mustard, and the light treatment at the same time, he said this would definitely give me melanoma. Keith and I looked at each other and all that's a good thing to know. And then we left. After I got back from Houston. I made an appointment with my dermatologist to talk to him about starting up my light treatment again. He said, I probably needed to wait a week or two before I would start the treatments to let the nitrogen mustard get out of my system. That really surprised me, because we hadn't been told that either. So I decided to call Duvic, just to make sure how long I needed to wait. I finally got an answer, and it was to wait two weeks. As of today, April 19, I have had nine sessions. I am seeing an incredible improvements in my skin. When I went to see Duvic a couple weeks ago. She made some comment under her breath of that taking me off the nitrogen mustard, because it was irritating my skin. I told her it hadn't been irritating me, but what counted to better I was looking now that I was doing the light treatment. I really feel like God was using her even though she didn't know it. Not only is my skin looking a thousand times better a think of all the money I'm saving by not having to use the nitrogen mustard.