Thank you all so much for your kind messages. Things are REALLY starting to get crazy now! The Hospice nurse came yesterday morning. Now - Dr. Gamblin (from UPMC) told us to come home and find a good palliative care Doctor. He said the cancer spread - mets all over, and 3 small tumors where the original remaining 25 % of the liver is (Top Left). Otherwise - liver regenerated well, reading good, etc. He said he does not need hospice yet -just a palliative coordinator. We came home and went to our PCP. He said he IS the palliative care Doctor for that practice (Thank God - we love him). He took me aside, after reading the radiologist's report from the CT scan from Pittsburgh, and siad he thinks Butch has only 4 or 5 weeks left to live. I should tell you that Butch contacted another infection - and is being treated with a course of antibiotics for it - another week in the hospital in Pittsburgh, and pills for home. He was horribly sick. Well , the Doctor said he would come to our home from now on to see him, and called hospice for us. Well, he has improved - a bit - and - when the hospice nurse came yesterday, she indicated that she does not think he is as far advanced as the Doctor seems to think, and thinks maybe he should stay on home health for another week or two - so we can monitor the ca 19-9 (it actually dropped a bit this week. So - we are totally confused now, and trying to make a decision. The real problem is that he cannot eat more than a few bites at a time. I have tried everything - small protions, more frequently, tempting foods, he doesn't get enough calories. He dies drink ensure, and I have started giving him benecalorie also. He is down to 138 - from 180. He is not in much pain (couple of pain pills each day - sometimes 3), we are controlling the nausea as best we can - got some medication yesterday to get rid if the gerd (or whatever it is), and I try to get him out of the recliner (we went to our granddaughter's birthday party Sunday). Since we got home from Pittsburgh last Tuesday, the confusion has cleared up and he is doing pretty well, mentally - I am not so sure about me!
I wrote this long, long message to describe where we are at - I guess you all have heard this story many times before, but - any light you can shed that will help me steer the ship away from the iceburg would be so welcome. I forgot to say that he is on lasix , as he can't stand up w/o losing his breath (the Doctor's in Pittsburg said he had Ascites, that is one of the reasons they kept him a week). We are going to get him on oxygen this week, I believe - that would help him, I believe.
Thank God for this forum. I love each and every one of you.