Patkid Posted November 16, 2005 Share Posted November 16, 2005 I am looking for any insight or observation you can offer. Brian is really going down hill. I am struggling to understand what is really going on. He can be 'up' (on the couch not laying down) for about 1-2 hours out of 24. He is in bed from about 9 at night till noon or so. Then he lays on the couch. He tries so hard. I watch him decide to sit up and it takes all his energy to so. Then he is too exhausted to stay upright and lays back down. Our last time out of the house was Sunday for Church. He made it till right after Communion then became ashen and sweaty and nearly passed out. He had to sit for about 15 minutes and then he was able to make it to the front door. Friends sat with him while I got the car and he just made it. He spent the rest of Sunday in bed. He is so concerned that he 'made a scene' in church. He is so mortified. I keep reassuring him that folks understand, but he HATES to call attention to himself. I have no idea if this exhaustion is a result of treatment or disease progression. Doc said last Thursday that his out of control liver enzymes indicate more and rapid disease progression but Brian is NOT having fevers or night sweats (his usual indicator of tumor growth). His appetite is really coming back well (though his weight is still down). The confusion that he demonstrated during our FL trip is 95% better (though he still has moments of confusion/forgetfullness). In the last month: He had one treatment with Alimta One Infusion of Sandostaton One long lasting version of Sandostatin (IM) then doc changed to Navelbine and low dose of Carboplatin, saying we have to find something to stop the tumors from growing. Now I have no idea if Brian is in decline due to disease progression or if all the poison is catching up with him. After all he has NOT had a chemo break since diagnosis (February). He has always been on some kind of chemo. He remains pleasant, determined, optimistic and very sweet. Any insight? Any suggestions? I have taken FML so maybe I just have too much time on my hands and I am obsessing.........and worrying.....and trying to take over the job we know is GOD'S ............but I would welcome any advice or hug or help or prayer or good vibe. Thanks for being here. Love you guys P Quote Link to comment Share on other sites More sharing options...
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