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Thanks Beth. We knew that it was terminal and she didn’t want any treatment. Her only wish was to not suffer, and in Washington we have death with dignity. I told her we would have a party while she was still hear and let her go once we did all of the required “things”. I wish I had know how quickly this would have been and I could have granted her wish. Instead she had a miserable 4 days, and I know that isn’t long comparatively, but I can’t get the last night out of my head.
I feel lucky I was with her, but it was very very hard to see her like that, and to smell someone dying, to cover their face in plastic………… it’s just plain hard. I know, so selfish of me to mentioned how hard this is.
We lived together for 25 years, and she was my best friend and helped me raise my son, who really gave her so much comfort on her last few weeks.
Hi everyone, I was trying to reply to my original post but couldn’t figure it out. I am very frustrated with the doctors. Nobody can tell me anything as it relates to progression of this disease. We know it’s already spread to her liver and in 3 weeks she has gone from being tired, but in good spirits to sleeping almost all of the time, her left arm is so swollen, and today she isn’t eating and has nausea.
Her oncologist visit with Dr. Gold is on June 3rd, but she’s so tired I am not sure I can get her there.
I have asked the rehab facility is the increase in pain meds in making he super sleepy or is the cancer progressing that quickly.
I can’t get any answers.
She needs to get out of rehab before her GI doctor will see her again, and then he will refer her to an oncologist. Most likely Dr. Gold at Swedish.
I wanted to meet with Dr. Gold so he could look at her results and give me some information, and I was told the patient needs to be healthy enough to come into the office.
I have an appointment with the GI Dr in 2 weeks, then he will tell us next steps. I just am puzzled that no one will really tell me anything, but I am beginning to understand there is so much that isn’t know, that it’s hard to say.
She told me she doesn’t want treatment and just doesn’t want pain.
The board helps me feel less scared, so selfishly it’s nice to talk to someone, thanks Mary
Morning Mary, She felt a lot better after the stent placement. They also took her off the medication they were giving her for her colitis, which is an immune suppressor. I was able to get a copy of the pathology and CT scan report and have been trying to educate myself so I can be informed.
She was feeling quite nervous and stressed out about this, so I decided to tell her what I knew, that it was bile duct cancer, it’s a high grade cancer that spread to her liver, and can’t be surgically removed. From what I think I understand they can’t “stage it” until we run more tests. I also said until you are stronger chemo isn’t an option, and once you get stronger chemo will extend your life.
She said she felt relief since she was worried I was going to “make her” do chemo to get better, but since better isn’t the situation that it’s off the table.
I have lived with her for about 20 years, and I am always telling her to eat right, be active, so she’s healthy, he has a lot of health issues and I am pushing or suggestion thing to make her healthier….. this is where the “make her do chemo comes to play.
This morning she said she’s constipated again, and that isn’t normal for her, 3 months ago this is how this journey all started.
Does anyone know how this illness progresses? Or does it vary for each person? Would anyone be willing to look at the pathology results and CT scan and help me understand what it means?
Thanks Mary and its so helpful to know that theirs isn’t a rule about tumor growth. I finally got the pathology report and she has high-grade dysplasia adenocarcinoma. He health wouldn’t allow for surgery, she’s considered morbidly obese, has crones, colitis, and is diabetic. Just the few procedures left her very weak. Her tumor markers are very high, her liver function is poor, but I don’t know if that’s because of the blockage or the cancer.
Are there places on the site where there is information about how to look for progression of the disease?