Hi Dinah,

Yes, we're back and it was very informative, but not very positive. I only have a minute as I need to get back to the hospital. Heather was admitted again today. If her insurance would have authorized it, she would have been admitted to Hopkins yesterday. They were appalled at her condition. said she is too weak to start chemo, but hopefully they will start next week.

Inquiring about clinical trials was a total waste because they won't take anyone in her poor condition, plus they won't take anyone with an open wound and she still has the two under her chin. Seems like some of the docs up here would have known that and saved us the trip. I am so mad at myself for even suggesting we go for a second opinion. She could have started chemo last week and been that much farther along. Found out I wasn't giving her near enough laxatives. And being constipated was causing her digestive system to back up, which is why she kept going downhill on the eating, which led to dehydration. A new doc at the hospital today said she should have been on a prescription laxative. Colace, milk of magnesia, senekot, none of these were enough. How was I supposed to know this? I just gave her what the docs said.

I saw a post by a new member from Pittsburgh, I think, about being bitter and angry at the "professionals" who didn't treat him in a proper and timely manner. Amen to that! I don't think I could be more bitter and angry than I am right now. And part of that anger is directed to myself. But at least I have the excuse that I am not a health professional. I wonder what their excuse is?

Anyway, the bottom line is that if they can get her stabilized, they will start chemo in a few days. Chemo will supposedly give her a 40% chance of shrinking the tumor and giving her a year or maybe two. So, if she's one of the lucky ones, we'll have her here for a little while yet. If chemo fails, I'm going to a nutritional expert and to hell with the mainstream professionals.

I saw your question about the sugar. I've been wondering about that myself. Supposedly, sugar feeds cancer? I think that is part of how a PET scan works. It shows up lots of sugar activity, which denotes cancer? I know that is too simple an explanation, but it does have something to do with sugar. I'm wondering now why all the nutritional supplements Heather has been given, and most of you too I would guess, have a high amount of sugar. And, in her case, taste has nothing to do with it, since everything goes in her PEG tube. Taste doesn't matter.

Well, I have to get back to the hospital. More later.

Rosie

Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.