In the dark...

I want to thank so many of you offering to drive me on the 6th. I don’t yet know the extent of that appointment; it may be two, back to back. I am going to wait and see before that driving decision is made. I am hoping to have the biopsy done the same day as the scan. My condition is actually Stage III [not IV as earlier reported.] according to my computer file at the VA. While Dr. Corvera was getting up to speed I was looking over his shoulder at what was compiled there. I want it all. I don’t know how much of that record is available to me [for my personal file] but I think in my case, at least [rational, not given to hysteria, in need of conversational fodder], I should be granted copies. Dr. Phillips did say that I should request a CD of all my imaging to have if I change facilities. I am curious about a patient’s access to their team of doctors. Is there a “Patient’s Bill-of-Rights” which outlines these needs? One thing is abundantly clear; the doctors seldom talk to each other. They rely heavily [too heavily?] on the notes. Had Dr. Phillips had as little as 5 minutes with Dr. Corvera prior to yesterday’s appointment it would not have happened. Considering how busy he is [he told us that if he was to perform the laparoscopic tissue extraction, he would not be able to do it for 6 weeks] and if the mass is indeed aggressive I could be dead by then. The standard protocol for treating indolent B-Cell lymphoma is to not treat it. It is watched and treated only when it is well progressed. Aside from the mass in my abdomen, I fit in that protocol. I am sure that any lack of communication between Dr. and patient is couched in regulatory hell and not a little paranoia. At this point I think I would prefer to sign a waiver of the doctors’ and the hospital’s responsibility just so that I would have all the info. They tell you not to go on a rip and self-diagnose after a quick visit to Wiki, but it does seem to be looking more attractive. Please don’t read this as belly-aching [pun intended] about the VA and UCSF; Bill will tell you that so far, everyone I’ve seen has been top notch. He and others have told me of their experiences with Kaiser and other facilities and practitioners and my plight does not see at all removed from theirs. So, I should be hearing about the biopsy schedule in the next couple of days and will then permit you all to fight over driving me. If it is merely for a scan, there is no reason I can’t do it myself but if there is a core biopsy done at the same time, I will gladly accept companionship.