need help for my dad

They scheduled the drainage procedure this afternoon. but my dad didn’t eat breakfast was planning to eat lunch. They said from now on no food and drink till the procedure’s done!! I am so stupid. I should have asked before… i forgot.

He doesn’t feel like eating and doesn’t care much. But he’s so weak, without meal, even weaker. I hope next time I can be more alert planning ahead. Cannot count on doctors… this could have been plan much better but nobody really cares except us.

Yes, people here are great!! I’ve learned a lot from all of you. Thank you very much!!

Thanks a lot Lainy!!

I complained to everybody that comes into the room and ask what do I need. Finally nurse said the residence doc told her that they are planning/scheduling the draining bile outside the body. Not sure why last time surgeon said the back not the side… I’d think should be the side where the bile duct located, otherwise; how can it be possible to drain anything other then blood. Maybe when doctor said back… he meant drain into a bag? Maybe I hear it wrong. He doesn’t mean it. It seems like radiologist will do it not surgeon doctor. I can see he totally lost interested in us. Therefore, I don’t think he’ll do the drainage procedure either.

I talked to the nurse if she can help schedule appointment with Dr. Stephen Schriebman, lulu’s doc. nurse refused said has to be surgeon doc referred. I don’t get to pick doc whoever I like, maybe in the hospital… ok. I understand here is not restaurant. I called Dr. Stephen Schriebman’s office and his nurse said Monday if we are still in hospital, doc will swing by, if we are discharged, we’ll go to his office. Finally making little progress.

Dr. Stephen Schriebman’s 2 offices are very close to my home. Hopefully will work out good

I am glad that I am not the only one that feels frustrated about this set of doctors… the radiation doctor seems good. he’s very promising… maybe overly optimistic because cc is a rare cancer that may not have a lot of doc has experience.

Dr Fong said he won’t see us until dad’s bilirubin is been taken care of. He must worried that we got so excited for the Sloan appointment and jump out of the hospital just go see him. He has appointment today or next next Monday. I don’t think we can make it today. Still waiting for what’s going on with the surgeon. I am afraid any step we choose is incorrect…. just so scared.

But the bilirubin is high. The drainage outside the body won’t be too wrong to do isn’t it? even 23 is high.

I am looking for the nurse to have them help schedule an appoint for lulu’s onc. need someone has experience cc, not experience in general. Thanks!!

We spent another day in hospital did nothing. Many doc came but the surgeon doc didn’t come. His residence doc came and said per the CT, the tumor is very close to hepatic artery that the surgeon thinks too dangerous to do surgery. I asked recommendation, residence doc doesn’t seem to have idea. said need to talk to family–us with doc. I said so where is the doc that never shows up??? I am not happy about the response at all. We still don’t have much detail on what’s going on. I got the CT report, and CT in CD. Will take to Sloan once my dad is discharge.

Today they said will talk to the surgeon and discover next step. oh yeah, that’s the same answer I heard 2 days ago. We are here for 2 days nothing happened.

The big question I have is they put him in hospital because bilirubin is high. 3 blood tests, 15, 30, and when we were in the hospital the 1st day, it’s 23. So from 30 to 23, dropped. I wounder if the stent wasn’t working but now works a little? If we still need to drain bile outside of the body. I am mad that the surgeon said we need to take care of the high bilirubin; it’s so high and dangerous…. ok, so we are in the hospital 3 days, this has not been taken care of or even talked about. I don’t see they believe this is urgent any more?? I have a strange feeling… maybe the surgeon wants to know if my dad is operable, but found he can’t do it, so he lost interested in us.

one oncologist came yesterday. said if we like to go to Sloan, it’s great idea. he doesn’t see confident about any helpful chemo suggestions. Said in general, it’s Gem… and the 5FU? The 2 medicine I see often in this board. he said could help extend a few months live. very depressing. I asked if he can give us different treatment options to compare pros/cons/side effects…. like a menu that we can consider in restaurant? Maybe I asked too much, he said no. just Gem something and the 5FU…the standard ones. I am not comfortable with his answers that doesn’t seem to work with my dad per his situation.

The radiation doctor also came yesterday. Dr. James Wong, chairman of radiation. He seems very optimistic and said the tumor is small. He has treated a lot of patients and many of them well under control, sounds very confident and promising. He said if we like to start, can do 5 days 15 min each day for while/maybe a month I forgot. I ask side effect… he said if my dad can’t stand it, maybe start 2 weeks, wait 1 week. something like that. And he said his department is very high ranking, aim very well on the tumor…. Dad felt very comfortable and hopeful after heard from Dr. Wong. I hope it is so “easily” under control. I heard radiation accumulates. Some people start well, and later very weak. Not sure my dad already very weak…. can he afford to do that. But leave untreated is no good either. so tough.

Dr. Fong won’t see us until my dad been discharged from current hospital. It’s so waste of time staying here. I feel lost again about the next step.