Hi everyone... it's been quite a while since I've been in here but I am at a loss right now. Not only do I have CML (dx Dec. 2006) but now I was informed by my father that my mother has liver cancer... hepatocelluar carcinoma. The news was shocking and surreal to say the least. The more I've researched this illness for myself I just couldn't even finish reading about it. Just took me a while to accpet it enough to even want to talk about it...
I live in VA and my parents are still living in SD so as soon as I found out I took a flight home - love the people at Delta, they got me home fast!!!- - anyway, I've been home now since the 22nd of Oct. We've made a lot of headway in seeing who we need to since then, only to find out that with all of best efforts, there's nothing that can be done except try to make her comfortable. The illness is too far advanced and she will not live to see another Thankgiving or Christmas. We are trying to make the most out of what time we have left with her.
We had made a trip to the Mayo Clinic and they were really good to us (the facilities there are incredible as well as all the people we dealt with) and the hepatologists/gastrointerologists that we saw basically told us what we feared but we needed to hear it from them. My mother just turned 65 this year and it's just too soon for her not to be around to be with us and her grandchildren. She has always been very healthy and this just came too suddenly, as most illnesses seem to do. I have remained here at home helping my parents now, and ironically since having dealt with my own illness it has given me the experience in dealing with appts. and doctors and in knowing what to ask and what to expect as we continue on with this journey. There is a drug therapy that we have her on now called Nexavar, and it's been out for about 3-4 years. It is suppose to help slow and possibly stop the tumors from continuing to grow. Even with this drug the outcomes in the past depending on numerous factors of course...have prolonged life in a matter of months. My mother is so weak from all of this and within 2 weeks of her being dx with this she looks as if she's aged 15 years. It's hard to accept, as it would be for most people to lose someone so close to them... I just hope I will be able to continue to be strong for her and my father.
I have plans to go back home to VA to spend Christmas with my family but then will return afterwards to SD for however long I need to. I'm struggling with having been gone so long from my family but I know being here with my mother and father is where I need to be... its where I want to be right now. I've just never been gone for so long. Any other time I'd only be away for a week or a few days more. I just try to keep my mind clear of all of this and not think about everything but it's easier said than done.
So... aside from feeling overwhelmed, sad, angry and frustrated... I think I'm doing fairly well. It's no surprise that I've also looked into what lies ahead for me in my own mortality as I also have chronic liver disease. I have been in treatment for it since my CML was dx. There were complications with it and when I was seeking to have a BMT they quickly told me no based on my liver disease. Apparently the procedure would be too taxing on my liver and would cause it to fail... I've already had 2 instances where my liver was failing so it does make sense but leaves me even more frustrated because it's bascially taken any choices I had away from me. It's as simple as it's stated.. Cancer sucks and I really am having a great deal of animosity about it even more so than I have before. What gives!
Anyway, thanks for taking the time to read and let me vent. I hope you're all doing as well as can be and I know we're all in this together. It's nice to know that however difficult our journeys may be in this fight that we all can relate in some way to how we're feeling. Thanks.....
Mark