Topic: Hello, first time visit here
Hello all. My name is liz, I am 21 yrs. old. My mother (age 54) was diagnosed with cholangiocarcinoma last august 05. She passed away this June 06. The doctors diagnosed her and said she would have 9-11 months to live, with chemotherapy. I can say my family ( sister- 25 yrs old, father 58-husband of 34 yrs.) has been to hell and back. I do not really know why I decided to write this. I am not one for sharing my life with the internet, but somthing about reading about all of the chemo drugs my mother was on, made me want to help others. It is what my mother would want.
My mother was diagnosed when she was in stage four cancer. She had pretty much cold symtoms since the start of the summer and by august she turned jaundice. Thinking it was gall bladder disease my father and I took her to the emergency room. Following that came an emergency stent in her liver and ct scans, mri's etc... So then they told us what was going on and basically the doctor said the only thing he could tell me was that life wasn't fair.
I'll tell you a little bit about my mother. The most organic, healthy woman ever! Always gave us fresh fruits and vegetables, she was an avid aromatherapist.. (she often found relief in sniffing lavender while on hospital visits. It has a calming effect.) So she exersized and never smoked or drank and this left us wondering why something so terrible could have happened!?!? She was so into wonderful food, and not being able to eat anything felt like such a punishment for her.
That is neither here nor there. After the stent, they said there could be no surgery or a liver transplant, because half of her liver was not functioning, they said it would only spread onto a new liver therefore she could not get on the transplant list.
Her oncologist told us about a clinical trial- lapatinib, and he was an agressive doctor and felt confident about it. So we tried it and I can just tell you knowing what I know now about chemotherapy, if i ever get diagnosed I would just say put me out of my misery now. I know that sounds terrible and I am not trying to depress anyone- but the side effects for her were 10x worse than we expected. She could not eat anything, everything made her vomit and the fatigue was unimaginable. She was on gemsar and xaliplatin (sp?) combined after lapatinib did not work. The xaliplatin side effects were the worst. I remember sitting in her hospital room watching the chemo flow into her and feeling like this awful toxin was going into my mom.. while she slept (they gave her attivan before treatments so she would be relaxed. Her nausea and itchy skin were quite bad from her treatment, and maybe from the progression of the cancer ( I dont want to completely blame the chemo) she could barely open her eyes. I was in college at the time spending my time out of class with her, lying with her, wathcing food network, and talking about my day and so forth.
Maybe I am bouncing around. I apologize for that but I am actually happy to discuss my feelings with people who might understand. I have not spoken to anyone who has lost an immediate family member from this type of cancer. It is very hard being 21 and lose a mother to cancer, people my age just do not know what to say. I would love to talk to anyone my age or if anyone older who could respond with somthing. I feel that if I could offer any advice, it would be hope for the best and prepare for the worst. That is what my family did and I think it worked for us. We are doing well now, we are strong from my mothers strength- because she was not afraid to die. She hated the toxins going into her body and she said she would rather have gone into the woods to die like a dog.. ha. But she did the chemo for her family. Her only fear was that we would be ok. I learned so much from this experience, and My wish now is to help others who may go through it. Thank you and hope to chat soon