I am so very glad I stumbled upon this site. I wish I weren't here but now that I am your kindness and knowledge of this terrible disease are helping me calm and focus on what is the best for my husband. Thank you all.
To answer a few questions....Ron is 66, and is the chief operating officer for the prime contractor that runs an army base. The base is the main employer in town and with all the dreadful shenanigans going on in Washington DC, with the threatened sequester and all that goes with it, the army have been dithering around, withholding money, giving crossed signals (because frankly, they don't have a clue what they are doing) and this in turn leads to terrible uncertainty about what projects are coming down the line, what will be funded, what the staffing levels will be and who will lose their jobs. My husband feels all this stuff most terribly and is so very good at calming everybody and getting the ship righted and in the right direction, but he understands that every layoff means that someone's life and plans are being seriously messed with. It has been very hard.
We live in the middle of bloody nowhere. 5 hours from Las Vegas, 2.25 hours from Reno and 2 hours from Carson City. The GI specialist we are seeing spent a year at Yale specializing in the liver. She seems good, but her office is a snake pit. Dealing with her office infrastructure has been bloody awful and I have had a couple of very straightforward conversations with them about dealing with people who are in extremis. There is a small hospital here, and our GP is good, but I know that there is simply no experience there with dealing with anything like this. The sense of isolation I feel here right now is one of the most terrifying parts of this.
Our oncologist is in Carson City, and seems to be highly qualified and has some experience with CCC. I don't know if it is enough. I just don't know anything at the moment.
We also have his mother, my beloved mother in law Becky, living here in town. She is 84, frail but feisty, and I am about worried to death about her too. I had to tell her yesterday, after she had returned from spending a few days at our daughter's place. It was one of the worst things I think I have had to do in my entire life. I called her sisters, who live in Louisiana, and they are coming up.
PCL1029, I AM going to question that radiologist. When we got the results that there was nothing suspicious cancer-wise, we were both doing jigs and raising the roof around the living room. This is one of the most gobsmacking aspects of this whole thing. The ultrasound report done on the 7th of Feb reads as follows;- "Hypoenhancing periductal tissue demonstrates mass-like confluence near the medial aspect of the right hepatic lobe and gallbladder fossa with extension into the caudate lobe. More confluent components measuring grossly 3.6 x 3.2 and 6.4 x 4.0 cm are present. There is mass effect on the adjacent hepatic veins with are secondarily narrowed. There is hupoenhancing sof tissue withing the right portal vein which may be bland or tumor thrombus". There is of course more but really???????those measurements didn't show on a CT scan? was he drunk, or blind or both???
We have the PET scan scheduled for the 27th. I WILL send his records and discs of all the scans to USC for evaluation. I cannot see him travelling there at the moment. He is so very weak. Good idea on the waiting until after the PET scans are done to start the chemo. I cannot bear to hurt him, or make him sicker if there is no good in it.
I hate this so much, I cannot express it but then I am calmed a little because all of you here understand. I am praying so hard for the strength, grace and the intelligence to look after my darling, his poor mum and our sweet daughters who are a mix of natural and step but are sisters through and through. I am meditating, eating on a schedule and exercising because I KNOW that I cannot take care of anyone else if I don't take care of myself.
Thank you all so very much