KarHart Posted January 31, 2006 Share Posted January 31, 2006 Thursday is going to be a hard day, I am just dreading it. Ken had scans last Thurs. and we go to Moffitt this week for results. I wish we never had to go, don't want to hear. If he has 20% or more progression they will remove him from the clinical trial. He had blood work done 4 weeks ago that the dr. said showed progression in his liver. I finally got a copy of his last scan and it said there were 5 tumors that were being measured in his liver and they all showed progression, but apparently there are even more tumors that are small. It seems so strange that he has lung cancer, but it is all in his liver. His lungs are just fine. He is definately showing signs of liver failure. The worst thing is the mental confusion, very frustating for both of us. At least he is not in much pain. He asked me last week how much time he had. That was so hard. From the start (15 months ago) I told him we could fight this thing, make it a chronic condition and just go from treatment to treatment. I did research, put him on supplements, pushed the doctors for the latest treatments. I feel like I have really let him down by getting his hopes up. Now I have to tell him its time to let go. I told him he probably only has weeks left, that he would probably go into a coma, that I did not think there would be much pain. The dr. at Moffitt has pretty much said there is nowhere else to go now, he has had everything available except some of the older chemos. So Thurs. I expect it to be our last visit. I hate to be so pessimistic but it is so obvious that he is declining, very difficult to see. Our daughter and her new baby came in from WY last night and she immediately picked up on how different her dad is from Christmas. It is really hard on her even though I have kept her updated. It's just different when you see for yourself. I guess we will need to call in hospice soon. He does not even have a local doctor treating him. He sees a P.A. at the VA clinic who gets all his records from Moffitt. I hope hospice has a doctor he can see to help manage symptoms, but I don't know how that works. I couldn't sleep last night, just kept thinking that maybe I could talk to the doctors about a transplant or they could at least RFA the big tumors to slow it down. I feel like I should keep pushing, but then I know it is not realistic and I know it is not fair to Ken. I just keep praying for more time, this is going to devastate his children, our son (22) is having serious problems but won't talk to us about it. I need to get him some help. I am so worried about everyone and I just don't know if I am going to be strong enough to help Ken die. Thanks for letting me vent, I am just so scared now. Karen H Quote Link to comment Share on other sites More sharing options...
Kasey Posted January 31, 2006 Share Posted January 31, 2006 ((((Karen)))), You will be strong enough for whatever it is you must do. You have navigated this journey full of twists and turns to this point and will continue to do so....and do it well. Ken is fighting a remarkable battle, and with you by his side, will face this new challenge as best he can. My heart breaks hearing the fear in your post. May our prayers and support help buoy you up for what will be, Karen. Remember we are here for you...for whatever you need from us. Remember that. Many prayers and hugs, Kasey Quote Link to comment Share on other sites More sharing options...
Ann Posted January 31, 2006 Share Posted January 31, 2006 Karen...I know how very much you have been dreading Thursday. Let's just keep praying that progression has slowed down and he will be able to remain on the clinical trial. I know how hard this is for you. Just try and put one foot in front of the other and take baby steps here. Convincing Ken that he could beat this disease was NOT a bad thing. Everyone needs someone in their corner cheering them on. Without hope, how far would he have come? As for Hospice,when the time comes, I can definitely recommend Weusthoff. They were so great to us when Dennis was ill. Our doctor actually called Hospice for us but I don'r think that's always necessary. Since you're dealing with doctors so far away, you might want to talk to the doctor about this on Thursday. I'm saying prayers for you guys!!! Call me if you need to talk! Quote Link to comment Share on other sites More sharing options...
francesbean Posted January 31, 2006 Share Posted January 31, 2006 My heart goes out to you, dear Karen. You are in my thoughts and prayers... Quote Link to comment Share on other sites More sharing options...
Miami Janet Posted January 31, 2006 Share Posted January 31, 2006 Hi Karen, You sound like a very strong woman who has been taking great care of her husband. Im sure you will have the strength to do what you have to do. Dont wait too long to call in hospice as it may take a day or 2 to set up...remember you can always go off hospice if you decide on another treatment. My thoughts and prayers are with you. Love, Janet Quote Link to comment Share on other sites More sharing options...
terriep Posted January 31, 2006 Share Posted January 31, 2006 Dearest Karen, My prayers will continue for you and your family. You have shown by example your strength and love for your dear husband. God bless you both, Quote Link to comment Share on other sites More sharing options...
bronbear Posted January 31, 2006 Share Posted January 31, 2006 Karen, I just wanted to offer prayers and support during this difficult time. I know how hard it is to know in your head that the end is near, yet your heart doesn't want to accept it. You are stronger than you think you are and your devotion is obvious. No matter what happens Thursday, you will handle it and get through. Just wanted you to know that I am thinking of you and praying for positive results! Quote Link to comment Share on other sites More sharing options...
tatlyn Posted January 31, 2006 Share Posted January 31, 2006 Karen, I wish there was something I could say to you that would really matter. I wish that this wasn't happening to your husband or to you or to your family or to any of us here. (((Karen))). I wish you peace and love. Lynda Quote Link to comment Share on other sites More sharing options...
hollyanne Posted January 31, 2006 Share Posted January 31, 2006 Dear Karen - I am so sorry that it looks like the end of treatment may be coming. I hope they can keep him in the trial. I understand how strange it is that he has lung cancer with everything being in the liver. The same was true with my mom, except she had everything in the bones...the spot in the lung never grew larger than the size of a dime. You have been so amazing -- the last thing you have done is let him down! My gosh, you have been the greatest advocate anyone could want -- and such a loving partner. If treatment is coming to end, please, please know that hospice will be a great relief for you. They will treat every symptom, and you can be sure he will not be in any pain. I will pray for peace and strength for both of you on Thursday -- and that you will have God's grace to deal with whatever you hear whether it is good or bad news. As you know, everyone is here for you -- whatever you need. All my love, Holly Quote Link to comment Share on other sites More sharing options...
kamataca Posted January 31, 2006 Share Posted January 31, 2006 Karen, This just stinks--no question about that. I know you have been strong throughout this whole process, and you will find the strength you need to continue on. It is just so dang awful to have to keep searching it out. Take good care of yourself. Keep us posted. Kelly Quote Link to comment Share on other sites More sharing options...
Patkid Posted January 31, 2006 Share Posted January 31, 2006 I am with you. I am praying for you and Ken. I understand. Love P Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 31, 2006 Share Posted January 31, 2006 Hi Karen, I am sorry you and Ken are having to go through this right now. How does Ken feel about stopping? I pray that the results on Thursday will be a positive result for clean scans or at least continued treatments. Praying that he regains his strength and you can get on with life. RFA, has been approved by FDA especially for the liver. There are people on this site who have or know about the treatments and where they are offered, especially in the state of Florida. Never, never give up. I will keep you and Ken in my daily prayers. Please keep us posted and let us know how Thursday's appt. went... Karen Quote Link to comment Share on other sites More sharing options...
Fay A. Posted February 1, 2006 Share Posted February 1, 2006 Thinking of you both. Quote Link to comment Share on other sites More sharing options...
RandyW Posted February 1, 2006 Share Posted February 1, 2006 Praying For Good News and Hope all goes well. Think Positive and never give up. I know it is hard to do though. Think Happy thoughts. Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted February 1, 2006 Share Posted February 1, 2006 Karen, So sorry to hear that Ken is not doing better. Praying for a miracle--no progression, continued clinical trial, opportunity for RFA and strength. I wish there was more I could do to help. I understand the fear, weariness, and stress you are going through. You can and will be able to handle this one hour, one day at a time. Take care and try to get some rest. ((((Karen)))) and ((((Ken)))) Quote Link to comment Share on other sites More sharing options...
Treebywater Posted February 1, 2006 Share Posted February 1, 2006 ((((Karen)))) (((((Ken))))) I'm sorry things are looking so scary. I so very much wish that this fear and terror didn't have to be parts of anybody's life, and I am expecially sorry that it's now in yours. You will keep going... and you will keep loving Ken and caring for him just as amazingly as you have up to this point. And when it gets hard, we're here to support you. Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted February 1, 2006 Share Posted February 1, 2006 You're in my prayers. Try to take it one day at a time. ((())) Joanie Quote Link to comment Share on other sites More sharing options...
stand4hope Posted February 1, 2006 Share Posted February 1, 2006 Dear Karen, I can identify with almost everything you wrote - including a son that needs help. I can also identify with others when they say there really isn't anything to say that will help. It's just hard and it hurts - A LOT, and there's no getting around it. One thing that helped me though, and still does, is having others who had gone before me and understood what I was going through, as well as all the love and support here and from family and friends. I couldn't have survived without it. That's about all I can offer - understanding. I just wish there was more that I could do. I think that just about every person that has responded to you on this thread has walked in your shoes, if not with a spouse, with a very close loved one, and if not with cancer, with some other disease or accident. We understand your fear. We understand your concerns. We understand your hurt, and we are all right here with you. All that being said, it still isn't over till it's over. I pray the clinical trial is working and you will be able to surprise us with GOOD NEWS at the end of the week. I'm praying for strength for all of you. Much love and great big understanding hugs coming your way! Peggy Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted February 1, 2006 Share Posted February 1, 2006 (((((KAREN)))))) I am so, so sorry for what you are going through!! GOD BLESS YOU and you and Ken are in my prayers. Jamie Quote Link to comment Share on other sites More sharing options...
Don M Posted February 1, 2006 Share Posted February 1, 2006 Karen: I wish that it had not come to this point for you all. I hope and pray that Thursday will bring you good news and that Ken can continue with the treatment. Don M Quote Link to comment Share on other sites More sharing options...
trish2418 Posted February 1, 2006 Share Posted February 1, 2006 ((((((((((Karen & Ken))))))))))) Praying that the only news you hear on Thursday is good news. My heart is with you. Trish Quote Link to comment Share on other sites More sharing options...
Ellen B. Posted February 1, 2006 Share Posted February 1, 2006 Prayers for both of you! Ellen. Quote Link to comment Share on other sites More sharing options...
J.C. Posted February 1, 2006 Share Posted February 1, 2006 Karen, My prayers are with you both, We always think we don't have the strength necessary, but we still find it in each day, each night. Hospice would be a good help to call, they are good for looking after the patient and control the pain. Will keep my prayers going for as long as you need them. Hugs Jackie Quote Link to comment Share on other sites More sharing options...
Suzie Q Posted February 1, 2006 Share Posted February 1, 2006 Karen, I am so sorry that things are not looking good. I know how much you want to find some thing that will work for him, yet there is a point at which we must not go chasing down every bunny trail in hopes of a working treatment because of how nuch our loved one is going through. Your love for your DH is evident. You've taken on this fight WITH him, and that's a good thing. Do not doubt your encouragement for him. You mentioned that some "old" chemo options may still be open to him. Do discuss this with the doctor, just to be sure, but with his tenuous liver status, the treatment may be too much for him.. Much support and many prayers coming your way, Suz Quote Link to comment Share on other sites More sharing options...
Maryanne Posted February 1, 2006 Share Posted February 1, 2006 Karen, I am so sorry to hear all this about Ken. I did not realize how much this progressed. I still am praying that there will be something on the postive side with his results. I will light my healing candle for him tonight and pray for a miracle or at least for Ken to be comfortable and pain free. By the way, Hospice will be a be help to you and a wonderful supporter. The will make him comfortable. But still praying for the miracle... Maryanne Quote Link to comment Share on other sites More sharing options...
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