carol58
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Hey Jeff, I agree that all the treatments are so hard on the liver, maybe this will be just what you need. You’re going with what we’ve always called your “gut feeling”. That is so important to be tuned into in life. I personally believe it’s the still, small voice of God trying to tell us something, if we would just listen. Believe that what you’re doing is the right thing for you.
Carol
Hey Kris, TRY not to worry. That’s so easy to say, isn’t it? Lots of positive thoughts and prayers for you from North Carolina. Let us know as soon as you find out.
Carol
My heart breaks for you Belle, your sister and your family. I pray that she will not have pain. I’m so so sorry. I pray for comfort for all of you.
Carol
Are all states different? In North Carolina, Charlie had to wait 6 months to get his 1st disabilty check. The only thing they would start the checks immediately for were ALS and a couple other diseases.
Carol
I’m 49, Charlie will be 53 in August. I’m just not quite to the point of wanting to move and downsize yet. In a few years when the kids are out of the house would be great. If we have to though, we will and wherever it is will be our home because we’ll be together. I’m just having a really hard time staying strong for everybody right now. I guess we all go through high’s and low’s and this is definitely a new low. He does tackle small jobs around the house when he can and does a little photography when he has energy. He can’t work, even part-time. I really am glad things are going so well for you and your husband Lainy. Like I said, I just need a place to share my frustrations with people that are going through some of the same things.
All problems and answers are different for each of us. I guess I just want to share with my friends here that, “Yeah, I know, this really sucks sometimes” and then things get better. Thanks for listening.
Carol
You’re right Lainy. I do think he feels like he’s failed us. He’s been a professional photographer for 30 years. He loves to do kid’s sports leagues. That has been taken away from him. He no longer has the energy and stamina to be able to do those kind of jobs. It’s like everything he loves has been taken away from him, but not us. I can’t imagine how that makes him feel. We’re all so tied to this house. It’s our shelter and refuge. It’s the only house the kids have known. I’m afraid if we move to an apt. it will be just one more huge change that makes everybody feel like “what’s the use?” That’s what Charlie keeps saying. I don’t know if it would be the right time to uproot us all…as you say Charlie sees these things as his failings. I know it’s not the end of the world, but with Charlie’s state of mind, I think it would be a huge blow. I’ll have to think more about it. With the economy the way it is, houses have been sitting for 6 months, a year and more here.
Patty, it’s BB&T in Winston-Salem, NC. I don’t want this to be about me begging for money. I really just needed somewhere to get this all out. I’m really falling apart. Thanks a lot.
Sophie, Kristin, Patty and Lainy – Thank you all so much. You all don’t know what it means to me to be able to “talk” with you. You know what we’re going through. No one else really understands. You’re all angels to take the time to respond. I’m trying to hang on. After 14 months of keeping everything and everybody together, the “strong one” Mom is losing it. It’s doubly hard because Charlie and I have always been best friends and talked about and shared everything. Now, it’s like I take it all on myself and shield him from things (stressors, financial concerns, insurance) as best I can. I think it’s finally just getting to be too much for me. I’m very emotional. I cry all the time. I’m trying to stay strong, but it’s a very hard patch we’re going through right now. I hang onto my faith or I would really lose my sanity. Heartfelt thanks to all of you!
Carol
Kristin, if you can travel south, Chapel Hill, UNC Hospital is great and also Duke. We went to Chapel Hill for 2nd opinion last year and they did liver resection where Winston-Salem (where we live) said no. Our oncologist is Dr. Hanna Sanoff. She is wonderful! I’ve heard many good things about Duke Hospital close to Chapel Hill in Durham, NC also. Hope this helps. I know you’re already thinking this, but what about other chemo regimens or radiation or CyberKnife or Theraspheres. Charlie’s young at 52 also and we keep seeking out different options and treatments. Gemzar wasn’t very successful with Charlie, but a lot of people do good with it. Keep us updated on what you decide.
Carol
Hey Irene, Charlie had liver resection in 11/07 and tumors came back 3 months later, but he would do it again if he could because it’s one of the best chances for survival with cc. The pre surgery and post surgery life has been good. Just cherish each day.
Carol
Hey Lainy, the Cyberknife sounds promising. We’re hoping Charlie’s tumors will shrink some so that he can be considered for that or Theraspheres. Hope all goes well for Teddy.
Carol
Dear Lana, whatever you feel – anger, frustration – all of your feelings are yours and valid. Express them to us anytime! I’m so so sorry about your Dad. What a wonderful daughter you are – don’t doubt that. I pray for God’s comfort and to put His loving arms around you in your time of grief.
Carol
That’s a hard one to answer because everyone reacts so differently. My husband Charlie, age 52 diagnosed in 5/07 had 14 weeks of gemcitabine last summer. He did well about the first half of it, but as the effects kept building up, he got more and more worn down from it and by the end, he was extremely tired and miserable. After a scan, we were told the tumors hadn’t shrunk any, but had not grown. It does seem that I’m seeing more about combination Gemzar with other drugs. I would have been concerned if, after 7 weeks, they said it had grown because of course we want it to go the other way. I would say to get a 2nd opinion if your Dad agrees. Some people have good results with Gemzar, but Charlie wasn’t one of them. Hope this helps.
Carol
What a special woman you are Barb and loved by so many! I’m so thankful that you’re at peace and that you have good care. Many, many prayers for you, your son and your family.
Much love, Carol
Hi Ramdev, as you’re looking and researching, I wanted to share that sometimes chemoembolization is done to reduce tumors so that surgery can be performed. I’m glad your wife is doing so well. I wholeheartedly agree with Jeff on getting another opinion. You need to know what you’re dealing with.
Carol
