carol58
Forum Replies Created
-
Posts
-
Val, thank you for including us in your prayers. You and Rand are in mine too. You’re so right about just telling friends and family what we need. I took your advice so that every minute isn’t taken up talking about cancer. I hope Rand is having a good week and wish you all the best.
Carol
Richard, thank you so much for your prayers. You and your family are in mine. I wrote down all your names and put them in my Bible. Surprise, we’re off to Chapel Hill Tues. a.m. instead of Thurs. so keep the prayers coming. Charlie will be undergoing his liver resection probably about noon tomorrow. I pray for healing and comfort for your Dad.
Carol
Dr. Hanna Sanoff is a wonderful oncologist at UNC Hospital in Chapel Hill, NC. She is very smart, personable and took all the time we wanted to answer lots of questions our regular oncologist in Winston-Salem didn’t know. She presented Charlie’s case to the tumor board there and Dr. Benjamin Calvo is the surgeon who will be performing Charlie’s resection this week. Hope this helps.
Carol
Hey Greg, we’re in Winston-Salem. I’m not sure where you are in N.C. I’m sorry you’ve had to come to this site and I’m so sorry about your mother in law. There’s great information here by a lot of wonderful people. My husband Charlie is a few years older than she is. He’s 52 and was diagnosed in May this year with Stage IV cc. I’m glad to see you’re going to UNC. We did too after 14 weeks of Gemzar at Forsyth Med. Center and our oncologist there had no clue what to do and really didn’t offer anything else. We met with Dr. Hanna Sanoff there who is great, then Dr. Mauro did a chemoembolization and now Dr. Ben Calvo is the surgeon who will be taking half of Charlie’s liver out on Thurs. This was all after being turned down for surgery at Forsyth, Mayo, Univ. of Penn. I wish your mother in law and all your family the very best. Please keep us updated if you can.
Carol
Dear Jules, thank you for writing. I’m so sorry about your Dad. I’ve been following your posts and have been so heartsick, I just haven’t known what to say. I hope and pray you’re doing alright. I liked what you said about focusing on simple pleasures and just sitting with Charlie and being there as a comfort. I’m going to remember that.
He is feeling better this week and in a much better state of mind about the upcoming surgery. He has gained some weight, is walking and doing a few things. We’re both dreading and looking forward to the resection if that’s possible. We know it’s going to be rough on him, but it’s a miracle any surgeon even wanted to try this and hopefully will give Charlie a chance to live longer.
Jules, I wish you peace and comfort as you go forward in your life without your precious Dad. What you wrote me was from your heart and most definitely helped!
Carol
Dear Southwind, thank you for sharing your story. I’m so sorry you’re having to go through this too. Charlie has come out of the darkness this week. I think the chemoembolization was so hard on him. He had never experienced anything like that before. Gemzar once a week for 14 weeks was nothing compared to that. He tasted metallic and smelled chemo for 3 full weeks after, no appetite, extreme fatigue and aches. It seems people have different reactions to chemoembolization. Some get along really well and some have a harder time. He was so tired of feeling bad all the time and not able to do anything, it really made him depressed and snappy. I’m so happy to say he’s coming out of that, feels better and is more like himself now. I guess his depression along with mine was just too much for either one of us to see our way out. With our faith in God and so much encouragement from the wonderful people here, we’re both doing much better.
Thank you so much for sharing your point of view. It really helps! Blessings and Best Wishes to you and your family.
Carol
I won’t hesitate a second. Please pray for Charlie, Carol, Sarah and Ben. Charlie is my husband, age 52 diagnosed end of May this year with cc. I’m 49, Sarah is 19 and Ben is 16. I ask anybody and everybody to pray for Charlie if they will. I would be glad to pray for your Dad, you and your family. As long as you’re praying from your heart, God hears you. So don’t worry that you don’t know exactly what to pray for. I pray for miracles for us all and also know that God is in control and has a plan for all of us so I know that His Will will be done.
Thank you for sharing your story. I’m so sorry about your Dad. I too have seen so many “silver linings” come out of this experience. I’m glad you have so many things to be thankful for.
I’m the main support for my husband. I pray to be more like your Mom. I started out doing pretty good, seeing the good coming out of it, being positive, etc., but lately I’ve had more trouble with depression (a chronic lifetime problem). I feel that the disease has swallowed me up too. Every friend or family member (bless them) wants to talk non stop about every detail. I just want to scream sometimes and say, “Please, can we talk about something else for 5 minutes?” I know I sound selfish, but cc is like a monster that is enveloping everything in a black cloud right now. It is so overwhelming worrying about Charlie, our kids, finances, etc. I should be on top of the world because next week Charlie is having one of the lobes of his liver taken out. That’s great that a surgeon wanted to take a chance on him. If I can’t pull out of this depression by then, I’ll put on a happy face and move forward as best I can. I’m so tired of being strong for everybody. Thanks for listening. I’m Carol and I’d like to have you and your Dad’s name if possible.
Not too heavy at all Jeff. Thank you so much for opening up and sharing this. You have helped me tremendously. You always do and so many others here too. I promise to share it with Charlie soon. He is coming out of his despair a little and this will help when he can hear it. Needs to be a little less defensive I think because then he shuts down and it’s just more heartache for me and the kids. I did have to pull some “tough love” on him when it got so bad. I told him he has a much better chance of beating this or living longer than anyone ever thought because of the resection surgery scheduled for next week and to be thankful for that. Some may say that’s heartless or too much, but I’ve been married to this great guy for 25 years and I think I know him pretty well. We learned about the cc diagnosis on May 29th of this year – our 25th wedding anniversary! Not much of an anniversary, but in July, just out of the blue, he got me 25 pink roses for our anniversary. He says we should celebrate all year. My biggest roadblock and something I need to pray about and change my perspective is how do we move on? How to get over that feeling that you’re in limbo, waiting, waiting. I hope that feeling will fade and be replaced by enjoying each day and living fully in the moment because it doesn’t feel too good living like there’s something bad getting ready to happen. This is something I’ve got to work on.
Your point about not feeling useless is well taken. Charlie mentioned that he was so tired of feeling bad and having so many days of “nothing”. Now that he’s starting to feel better, he’s starting to do things he enjoys.
Prayers from anyone and everyone for Charlie’s surgery on the 8th and recovery are greatly appreciated. Jeff, we’re all in the palm of His hand and He will take care of us! Thank you again for writing.
Blessings,
CarolThank you Kris for your kind words. It helps me to hear things from your perspective – to relate to how Charlie might be feeling. I’ll do my best to stay strong and I’ll never stop reaching out to him like you said. You’re a smart, wise woman and I wish you and Hans all good things! You’re in my prayers also.
Carol
Hi Lisa, I believe you are right on target with everything you said and I feel like I’m losing Charlie and losing the battle…
Thinking and praying for you and your family too. Thanks for the love.
Carol
Hi Mary, I tried to talk to him about how he’s feeling again this a.m., but all I got was a loud “I’m tired. What do you want me to say?” He lays in bed or on the couch about 20 hrs. a day and the rest of the time he just sits. He won’t drive or go anywhere. I don’t know how he’s going to undergo this major surgery in this kind of shape.
I hope your husband never gets to this point with you. It feels like I’m up against a brick wall and I feel so alone. He won’t take antidepressants. He flat out refuses. I’m sure your husband’s denial is hard to deal with too. There’s just nothing easy about this, is there?
I’m sorry you had a rough day yesterday, me too. I hope today is better for you. You’re right, we do want to go back to our old lives. Thanks so much Mary for your kind words and you and your husband are in my prayers too.
Carol
Hey Marja, I’m glad it helped to get your feelings out. This is a great place for that and there are so many people willing to help and share. I’m also going through a very rough time with my husband who has cc. It does feel like a bad dream. I’m right there with you in spirit and good thoughts even though we’re halfway around the world from each other. I know your Father appreciates and loves you very much.
Blessings to you and your family,
CarolDear Nichole, I second everything Joyce said. She is much more knowledgeable about all this than I. We have only been dealing with cc and researching since end of May this year when my husband, age 52 diagnosed. Our experience has been similar to yours. Your oncologist said “odd”, ours was just blubbering nonsense. I think most of the medical community knows nothing about cc or very little and are very quick to give the textbook standard 6 to 9 months and chemo only. I understood the whole theory about not wanting to transplant more than Charlie’s onc who kept asking my why a transplant wouldn’t work. Charlie was also turned down for transplant at Mayo and Univ. of PA. Sad but true what Joyce said about not wanting to waste a precious liver on someone who’s going to have a reoccurrence anyway. That does seem to be the general thinking.
Charlie just had chemoembolization at UNC Hosp. in Chapel Hill, NC getting reading for liver resection in Nov., taking his whole left lobe out which is full of tumors too many to count. There’s a bit of tumor in the right also, but they think if they can get the biggest part with tumors out that they can manage the rest and hopefully give him some more time. We just couldn’t accept 6 to 9 months…like everyone on this site.
Your Mom and Charlie’s age are definitely in their favor. Don’t give up hope. Get 2nd, 3rd, 4th opinions and keep fighting. I think doctors are too quick to write cc patients off. Also from our experience their overwhelming number of patients herding us in and out like cattle was not reassuring.
Nichole, I know your frustration and wish blessings for you and your family.
Carol
Hi Sandy, your story touched me deeply. I’ve been coming to this site off and on since end of May this year when husband dx with stage 4 cc. My heart just breaks for you and your family, especially your 18 year old daughter. We also have younger children. Charlie is 52 and our kids are 19 and 16. Like the majority of cc patients, we were pretty much given no hope, just chemo with Gemzar for 14 weeks until a consult at UNC caught a surgeon’s interest there who felt he could do something to help. That’s where we are now going towards left lobectomy. He also was given 6 months which would be around T’giving and Christmas this year. Thank God for the surgeon’s interest. I think we’re going to beat the 6 months and hopefully go longer. I can’t imagine being 16, a boy, Ben who’s so close to his Dad losing him at that age and my daughter who’s a “Daddy’s girl” as I’m sure your daughter was too. I pray that will be a long ways off.
Love, comfort and peace to you and your family,
Carol
