Hi. I haven't written anything for a while...
My dad is actually doing a lot better. The reason that there was fluid in his lung before, and the reason he is on oxygen now is that he has a large tumor in the pleura of his right lung. It developed rapidly, in about two week's time. It is crazy how fast this stuff can grow. Anyway, while the tumor was growing so rapidly he was doing very poorly. He was so weak he could barely move on his own, he could not eat and all he could do is sleep. Now that the tumor has established itself and the growth has slowed down or stopped for now, he has rebounded. He is on Megace, an appetite stimulant, and he is now eating three meals a day plus snacks! Granted, he is not eating as much as his pre-cancer self, but before the Megace we were lucky if he took in 600 calories for the whole day. Some of his strength has come back and he is even walking to and from the bathroom twice a day with the help of his walker, and he can get in and out of bed to his wheelchair now with no help.
The bad news is he has a new oncologist he is working with and she is not familiar at all with cc. She just told him the other day that tumors in the pleura of the lungs are so rare that she believes he has mesothelioma too. I mean, can you imagine? So now my poor dad thinks he is the victim of two incurable cancers. I tell you, that day he just about gave up hope. I have talked to him a few times since then, and I think I have him convinced that the stuff in his lung is metastases from the cc, but I know this has really put a damper on his spirits.
He was all set to get a pic line put in and start chemo again, and now he canceled the pic line and is putting off the chemo. Yes, it is palliative chemo, but I know he is now thinking he has no chance at all after what that new doctor told him. She is located in the hills of Pennsylvania, and it is mining country up there, so she sees a lot of mesothelioma. So instead of researching cholangiocarcinoma and knowing that it metastasizes to soft tissue throughout the body, she jumped to a familiar conclusion for her. It just makes me mad.
I wrote to my dad's first oncologist and told him what is happening and asked him to please call the new doctor and familiarize her with my dad's situation and cholangiocarcinoma as well, so hopefully he will find the time and be able to do that. I think my dad needs to hear it from a doctor that he does not have meso. Even though the end result would be the same whether he had one or both, I think that it is psychologically damaging to hear news like that and that the doctor needs to tell him she was wrong.
Well I hope everyone else is doing as well as they can. Just wanted to check in and nose around and see how others are doing and give a little update on my dad. Best wishes and prayers to all.