My dear mother

I wasn’t sure whether to post this in Introductions or remembrances. I have been reading and feeling supported by this site for several months, but I have never posted. I continue to read this board, and I wanted to share my mother’s story. My 85 year old mother was diagnosed with CC on August 6, 2014. She had some routine blood work in February that showed slightly elevated liver enzymes. She had an ultrasound right after that which did not show anything abnormal except for a little fatty liver. She had the bloodwork repeated in July and her liver enzymes were even higher. Her general practitioner sent her for another ultrasound that showed an enlarged bile duct. By this point, her appetite was very poor, and she was burping a lot, but had no other real symptoms. (We thought her lack of appetite was due to anxiety since my father had been diagnosed with lung cancer in June.) She was scheduled for a ct scan the next day, but cancelled her appointment because she didn’t feel like she could drink the stuff necessary for the scan. That was our signal to get her to the ER. They did a scan that afternoon and came back with the diagnosis late that night. I had never heard of cholangiocarcinoma before, but a quick look on the internet did not provide much hope. She had a Klatskin tumor in the bile duct and mets in her omentum. They inserted a biliary drain two days later to relieve some of her symptoms and a few days later they put another drain in her other side. She was in the hospital for 8 days and was eating almost nothing and was very weak. I couldn’t believe how quickly she had gone from a vibrant and energetic woman to someone who could not even get up to go to the bathroom herself. After she came home from the hospital, my sister and I stayed with her and our father around the clock. Her appetite increased some after she went off the antibiotics, and she regained enough strength to be able to come downstairs by herself and cook some of her own meals. We explored some options for treatment, and we were told that chemo would add maybe 4 months to her life. My mother wanted to try chemo, but her blood work showed elevated bilirubin and decreased kidney function. Her oncologist at the local hospital said that we should try to increase her fluid, but that maybe this was just “nature’s way.” (!?!) We took my mother the following week to Jefferson Hospital in Philadelphia where she met with Dr. Loren He took a look at her blood work results from that morning and admitted her to the hospital right away. She was losing so much fluid from the biliary drains that she was dehydrated and her kidneys were suffering. After a day of fluids they were able to get her kidneys functioning better (nature’s way, huh?) and Dr. Loren was able to insert three metal stents and get rid of her drains. My mother knew that this procedure would not fix the cancer, but she was so grateful to this doctor for giving her a better quality of life. Doctors at the local hospital did not even try to put in a stent they just said she’d have the drains for the rest of her life. The ERCP recovery was not easy. My mother had some pain and weakness again, but was better in a few days. The following week, the day she was supposed to meet with her new oncologist (thinking about how her previous oncologist was so quick to dismiss her, it’s no wonder we found a new one!) she had a pulmonary embolism and collapsed in the bathroom. She was taken to the hospital by ambulance and spent a few days in the ICU. They inserted a vena cava filter and she came home after a few days on September 14th. At that point, she decided that she did not want to have any treatment for the cancer. She went on dexamethasone and was feeling pretty good. My brother came in from California, and she spent her days hanging out with her children and playing cards with her grandchildren. Shehad some pain, but it was easily managed with 25 mg of tramadol every 6 hours. She definitely did not feel like her old self, but she felt well enough to be up and about for most of the day, although she didn’t leave the house much. (She didn’t have to with five children and nine grandchildren, there was a constant stream of people and activity in the house!) On October 8th she went on hospice care. We travelled to her home in Cape May, NJ with most of the family. We had a lovely weekend of strolling (in a wheelchair) along the outdoor mall and watching the sunset at the beach. It was a strong wish of both my mother and father to get to Cape May (their favorite place!) one last time. We returned home on Monday, October 13th. On Wednesday she had a good dinner and watched a movie with my father. She felt pretty good. On Thursday morning she awoke with pain and we had to give her morphine for the first time. We gave her small doses of morphine every two hours for about six hours and were able to control the pain. My mother was unable to get out of bed, however, and slept a lot. On Friday we were giving her morphine every six hours. She did not seem to be in too much pain, but was very weak and had trouble speaking. The whole family gathered around her that weekend and we were each able to have beautiful conversations with her. She wasn’t able to speak much, but was able to tell us each how much she loved us. We had a houseful of people all weekend, and anytime anyone new would come into the room, my mother would open her eyes and lift her hands to acknowledge their presence. Ans she could definitely listen and nod her head to all of our stories. She was comfortable, peaceful and communicative all weekend. Sunday night after most people had left, she became very agitated. We had to increase her morphine to every hour for about 4 hours or so. By the middle of the night, she was calm, but unresponsive. She lay peacefully in her bed and passed quietly on Tuesday afternoon with my father by her side. It was 11 weeks from diagnosis until her passing. I miss her terribly, and I am shocked by how quickly this cancer took her, but I am grateful for her wonderful, long life and her peaceful passing. I want to thank everyone on this site. Your stories have comforted me and give me hope that my grief will lessen with time.