[Believe51]

Well Missy, I have had you on the mind even more since finding out this news. I can understand about not wanting to add anything else. If you did, you know I admire the results of Temodar. The important thing here is the body being treated systemically and responding is a blessing. The brain however, is an issue and although I do not compare anyone's journey I most certainly bring my experience up to the base.

Ed has been fighting one of the worst documented case of brain mets in the state for over 25 months. His WBR was aggressive and needed and for a person in such a state, 25 months is our blessing. WBR is something we like to keep in reserve and I have seen the wonders it can produce. My concern for you is to find out how many gray units of radiation total as Darlene mentioned. I would avoid the WBR because you may want to keep that in the box.

Lani and I have some information to share, very recent research too. In the meanwhile find out if there is any edema, this is important. Finding out that there is no edema helps you in the sense that you may be able to postpone such a feat as WBR. You must ask how these things are growing. Are they neat and round, are they distorted? How fast are they growing. Sometimes we are able to buy time by finding the growth rate. We have been lucky with many things in Ed's brain.

I would find out the details and ask some of these questions. I can promise you that when you get those answers the rest of the pieces will fall together. As for WBR, side effects for Ed are mighty different than others. His persistent brain issues are not fair to discuss. He is almost deaf some of that from his music, some from radiation. His extremely high IQ has changed dramatically, memory...again, copious amounts of opiates and narcotics. And most importantly, he has received more radiation to the brain than suggested.

Brain swell from WBR can occur many months after actual radiation along with other side effects. For us it did what we needed it to do. For you, I would wait it out, get your details, try to postpone. You have many more years that WBR can be postponed IMO and this may be a constant battle. If Ed could do this in a hopeless situation I know my Hucklebuck will have no problemo!! You will maintain and overcome, I am sure of it.

My mind in in a million places and I am sure I will have more that I need to post. I will get some information for you in the upcoming days. Do not consider Interthecial Herceptin right now, pleaseeeeee. Breathe. I am right here and I love you.