candyz

turns out the drain was plugged and leaked all over and then he felt better! he’s in the hospital now, had a bigger tube put in and they’re just keeping him to see if everything is ok. He is looking so much better and stronger yesterday and not in much pain now, so I’m happy! We had a talk with the doctor and he said he can’t promise anything, but wouldn’t even be considering putting him through the surgery if he didn’t think there was a chance to get it all.
I’m so very thankful to all of you and this board…I’ve been able to tell my brother some of your stories and responses I’ve gotten and he can’t wait to get online himself, so you’ll all be meeting him soon! Being able to hear that these drains can be problematic, but still work, helped alot.
candy

thank you all. my brother is still trying to deal with the blow of doctor’s diagnosis, and I’ve tried to give him as much support as possible but yet let him know what the real options are. I’ve told him that surgery isn’t seen as a cure, but that I’ve seen people on these boards who have had significant time after surgery. I have a number for another top doctor with University Hospitals..Dr Christopher Siegel-anyone heard of him? Planning to call tomorrow am if my brother wants me to. Tonight he is back in hospital after having his drain leak all over the place. We’re waiting to see what they do for this and I’m hoping he doesn’t have any more complications. Sounds pretty common from these boards…It sounds to me also from these boards that if a surgeon is willing to proceed with surgery we should say yes if there’s any chance that it gives him quality time. That’s the hardest question.

Thanks everyone. I was all ready to get him to a hospital today and he said he was doing better and didn’t want to go. His friend stopped by and he got up, washed up, changed his clothes and finally capped the drain. Said he felt better after that. We think he was really dehydrated as all fluid going straight out to the bag. Said his urine was better color too. So I didn’t push it although this evening he sounds so down. I hate to tell him but the surgeon told me today that he really thinks we got this late and there isn’t much we can do. He said the oncologists probably won’t even take him on because there isn’t any physical “proof” to confirm the diagnosis, but he’s very sure this is it because it can’t be anything else. This surgeon is the Cleveland Clinic’s liver transplant specialist. He’s offered to try surgery but really without hope. Just thinks that doing the laparoscope, which they would do before the surgery, will give us the final diagnosis and then we will have easier time accepting that we tried. I have to tell my brother, too, tomorrow that my parents will be here soon. I had to tell them to come home because I need help and they need to be here with him. (can you believe I had to do that!) anyway, he doesn’t want them because of Mom’s drama and negativity, so he might not be happy I called them. I’m going to make some calls tomorrow to the big cancer center here and see if anyone will talk to me. I so appreciate this site because it’s useful to have a place to go to. Can anyone tell me what has helped keep your attitude positive and fighting in the face of this awful disease? I’d love to suggest that he and his kids (and me if he wants) take a mini trip somewhere to build some memories, but am afraid we don’t have enough time for even that.

thank ou so much for your reply. I was planning to ask him if I could take on the insurance and medical bill review, but the other things are great suggestions too. We should find out Friday if he is a candidate for surgery or not, although the doctor didn’t seem to have high hopes. I keep trying to keep positive since his CEA and CA19-9 were fine and his biopsy was negative, but the doctor also said that doesn’t mean anything. My parents are very selfish but have said they’ll come home if they need to. It’s bad, obviously they would be needed now rather than the permanent vacation they are on, which they could resume later or take smaller trips more often. My brothers children are teenagers, not driving yet, but they live with his ex-wife so there isn’t a real care issue, just a coping issue.
My prayers are with you as well, it seems like you’re diagnosis might be fairly recent? What kinds of treatment have you had? How do you feel? I can’t really imagine how difficult it would be to manage this disease as well as raising children; I had very early ovarian cancer when my girls were 4 and I was incredibly lucky and am fine now. The thoughts and worries that I had about my family were so difficult; I do have a very loving husband who has been my rock. I only hope he can handle what I’m going to need to do to take care of my brother.