KarHart
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Posts posted by KarHart
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Too sad for words.
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Dear Fay, thank you for coming to say good-bye for now to us. Your wisdom and compassion is going to be sorely missed. I hope you and your family find peace in the coming days.
Karen H
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Last night I woke up dreaming about a liver transplant for Ken. It took me a long time to get back to sleep thinking about it. As soon as I got into work I started doing research and though about calling his Onc. for a recommendation. Fortunately, I was able to bring myself to a halt, but it was so hard.
I know it is impossible for a number of reasons (shortage of donors, type blood B-, not primary liver cancer). It is just really hard because I know if he could just start with a new liver we could have a fighting chance again. His lungs have remained stable for 8 months, no brain or bone mets. If there was an unlimited supply of donor livers I would try to pursue it. It is just so damn hard to give up.
He got 2 units of blood at hospice yesterday, I hope this will give him a boost in the energy department. I had to take him to the center which is in the hospital where this all started 16 months ago. When I went back to pick him up this song was playing on the radio "Remember When" and I just started crying uncotrollably. Had to sit in the parking lot till I got under control and all the tears dried up. I haven't done that very much and I know it means I am getting really scared. On the surface I know I look like I am doing just fine, but I know I am not. I have to keep it all together though, just too much to take care of right now. I will have all the time in the world to fall apart later.
Karen H
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New babies are so great. Nothing in the world makes me feel better than holding my little grandson. Not much makes Ken smile anymore, but baby Ryan does! I think granddads always have a soft spot for baby girls, I know my dad did. Hope Alan gets a lot of happy time with the baby.
Karen H
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Sue, I am so sorry. It is terrible to see someone you love suffering. I know what a scary time it is right now, I will continue to pray for you and Mike.
Karen H
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I am sure it will be a beautiful garden, reflecting the beautiful person Leslie was. She was so special to all of us.
Karen H
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Thank you to Ann for posting for me (and flowers too!)
It has been so up and down. The other night I was worried that Ken might not even last long enough for all the family visits coming up. He was running a fever again, very weak and unsteady, muscle tremors, confusion. Then yesterday he got up early, clear minded (more or less), moving easily. So then I think "well, maybe it will be a couple of months, not weeks."
The hospice nurse and doctor came yesterday. I didn't say anything about the mental confusion issues cause I knew it would make Ken mad. He really just isn't aware of how strange he behaves sometimes and I found it just aggravates him if I mention it when he is lucid so I've decided to just not make an issue of it and go with the flow. The biggest problem is when I bring him his pills twice a day and he insists I already gave them to him. I have to argue with him every time to get him to take them.
The doctor and nurse both told me to stop pushing him to eat. I admit I have been nagging him, it just scares me since I know the dying process includes stopping eating. He has really eaten very little in the last 5 days. He did drink some Boost and last night he did eat some dinner. I promised I wouldn't push him anymore and I think that may be why he made more of an effort last night.
Today, the nurse is coming to draw blood and tomorrow I am taking him to the hospital to get blood. This is because he is so anemic. Hopefully, it will give him a little more energy to face all the family coming in. Extreme fatigue is one of the hallmarks of liver failure so it may not do much good, but it can't hurt.
Our daughter and the baby are coming today. For me that is the best medicine. The baby is pure joy. His oldest son is coming Friday, and his other daughter and her family on Sat. One of his sisters and her daughter are flying in next Thurs. from KY. They are going to fly in and out the same day. His sister has never flown and I am just so touched she is going to so much effort to see him one more time.
I have no idea how much time we have left. Like I said some days it seems like it may be really soon, then other days I get my hopes up for longer. I feel that we have been incredibly blessed that so far he has not had any really bad symptoms. He doesn't feel great, but he is not in pain and has not had any relevant health issues (if you can say that about anyone dying). He is just slowly fading away. All the prayers are working, that's the way I see it. It is so touching how many people here and other places are including him in their prayers. Thank you. He even asked to see the chaplin. He came yesterday, I wasn't there, but I am sure he will come again. That gave a lot of comfort to our daughter. So please keep those prayers and good thoughts coming and know that I continue to pray for all of you.
Karen H
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Fay, you are already memoralized in our hearts. Thank you for being such a giving, wonderful, helpful freind to all of us.
With love,
Karen H
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Fay, so very happy you are home. Hope we hear from you a lot, but know you need to take it easy. You are always in my prayers.
Karen H
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Carleen,
I know what you are struggling with, sounds so much like my husbands situation. Fay answered a post of mine with really good information on what to look for with liver failure.
Ken's liver has many very large tumors yet he is still doing ok. Fatigue is bad, some mental confusion, bad sometimes. However, even with his massive amount of tumors (I've seen his last scan and there is a section that has just become one huge tumor) his Dr. at Moffitt has sent us info on a phase I trial so he must not feel he is too far gone yet. You have to have a certain life expectancy to get in a trial.
From what I know a large part of your liver can be damaged and it can still function, so I know hearing multiple tumors is so scary but hang in there, maybe something will stop or shrink them.
Since they are going back to prior chemos it might be time for him to look at clinical trials. I know in Ken's case that is the only option we have.
Keeping you both in my thoughts and prayers.
Karen H
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I cancelled going to Miami to check on a clinical trial due to Ken's bloodwork done in the ER on Sat. His bilirubin was at 2.6, for the trial it had to be under 1.5. O.K. so on Friday we had gone to the GP doctor just to get established with him again. He ordered blood work and I got the results late yesterday.
On Friday's test his bilirubin was 1.2! On Saturdays test his liver enzymes were way, way up. Look at Friday's and they are less than half of Sat. How could things more than double overnight? Especially, when they said they could not find out what was causing his fever. I feel that even though I told them he had multiple liver tumors, once they saw the scan they just automatically assumed that was the problem. Just because you have cancer doesn't mean something else can't be wrong.
Anyway, I called his GP's office and explained all this and asked to have blood work done again, so they are faxing an order. It is just so frustrating. Has anyone had blood work change so dramatically overnight?
Moffitt has approached us about a Phase I trial there. It sounds kind of brutal and Ken does not know if he wants to do it. It would require a lot of trips over to Tampa. I told him it was his decision, but it was really hard for me to give up when there was still something to try. I know the Dr. over at Moffitt would not recommend the trial if he thought Ken was on the verge of death. Of course I told Ken I would support whatever he decides.
I am really hoping the blood work today will be back down. He did have a small fever again last night. His blood work on Friday was not to bad considering, but Sat's. was scary. Sorry to go on so long, just really bewildered.
Karen H
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We did not go to TN, Ken just wasn't up to it. Good thing since they had major snow, I've never driven in snow.
Friday night Ken had a bout of major pain in his abdomen. Sat. morning he woke up with a fever. I finally was able to get him to go to the ER. Thought maybe it was his gallbladder since his last scan said he had gallstones. They admitted him and did tests and basically said they thought it had to be his liver. The gastro dr. seemed stunned after seeing the scan. I had told him he had multiple tumors in the liver, but I don't think he was prepared for how extensive. I saw his last scan and there are just huge areas of tumors. They basically said there was nothing to be done. I told them we wanted to be discharged as quickly as possible. Of course he started running a fever again and the nurse seemed to think we should contact his dr. but I told her there wasn't anything to be done and we just wanted to go home.
It is really hard since Ken does not want to go into hospice. I think he feels that hospice will make things go faster. I am not going to push him until things get worse. He is having episodes of confusion and memory loss again. I know this is from the toxins building up. We are trying to arrange for our daughter and his daughter and son to all get down here in a couple of weeks at the same time. I am just not sure if that will be soon enough. I asked the gastro dr. how long he thought he had, but he said he never makes those kind of predictions. From my research I don't think it will be more than 3-4 weeks but there could be some kind of catastrophic failure, I just don't know.
I was so sad to read about Joel. I am so glad to hear that Fay is going home. It just made me so angry that she was trapped in that hospice. I hope she will be able to find the peace she so deserves. It has been very hard to read posts lately. Thank you to everyone for all your prayers and good wishes.
Karen H
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I had everything set up with hospice, but I could tell Ken was not ready to see them. So I went back to researching clinical trials.
I found a Phase I at the University of Miami. At first the clinical trial nurse did not think he could qualify since he has had docetaxel. However, I read the exclusion criteria and it said "progression with docetaxel within a year". Well, it has been a year since he has had it. I called back, she checked with the Dr. and he said I was right and he should come.
We have an appt. next Weds. Right now I am trying to get all his records from Moffitt sent down there. It is a long shot that he can get in, his blood work is borderline right now. Hopefully, it won't change in the next week.
We are leaving tomorrow to go to TN to see his granddaughters's cheerleading competition. I will probably have to do the driving which is going to be rough. Ken always drove when we traveed. I am not much of a long distance driver so I am giving us plenty of time to get there.
Right now Ken is doing o.k. He is having more pain in the liver area, but his mental confusion has really cleared up. Apparently, it was caused by the clinical trial drug. He has definite symptoms of liver failure, but I don't think anything is critical yet.
It really is hard to just let go and say no more. I know we are really close to that point, but I feel like in order to have a miracle you have to do something so God can make that miracle happen. Maybe this will be our miracle, I can only pray.
Karen H
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This is just the best news! CK should knock the rest of it out. I am sure the collapsed lung was not fun. They decided not to do a needle biospy on Ken for that very reason and did the liver instead. It is just great that no cancer showed. Cure is a magical word.
Karen H
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Terri, please add my prayers, I am so sorry that you are in pain, I hope they can get it under control quickly and you will be able to go home soon.
Karen H
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Hi Nancy, I remember you too, good to hear from you again. Hope your PET scan comes out o.k., let us know how you are doing.
Karen H
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Sue, I know that was hard to hear. Hopefully, they can get the infection under control and Mike can continue treatment. Sending more prayers.
Karen H
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It's great the Tarceva is holding the line for you. I hope it continues or better yet just knocks them all out.
Karen H
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Sue, how terribly frustating. I hope Mike's doctor can give you some helpful info today. Prayers continuing.
Karen H
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Brenda, I am so sorry. I know how hard it had to be on you and your family. My husband has battled with this choice. Not due to pain, just not wanting to die a slow death. The fact that I would lose a major benefit is what has stopped him and I am grateful. This horrible disease takes so much from everyone involved. I hope your family finds peace now that he is no longer suffering.
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Peggy, it was good to hear how you are doing. I think of you often and the other wives who have lost their partners. I admire the courage you all show and I hope that I will be able to be as strong when I will have to move on.
Karen H
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Larry, my deepest condolences to you and your family. What an incredible marriage you had. What a blessing to have such a large and loving family.
Karen H
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Hi Karen,
Actually, I asked the dr. yesterday about RFA. He was highly doubtful but said he would talk to the radiologist. Apparently, there are too many. I am pretty sure that he has too many for CK and they are too big. I had looked into that a year ago when there was only one.
I told the dr. I knew that it would not cure him, but it seemed that if they did the big ones it could at least buy more time. Sometimes it is just hard to accept that there is nothing left, but I am trying.
Karen H
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First, I want to thank everyone for all the wonderful support and prayers. I was really in panic mode the other day and it really helped to read everyone's post.
Pat and Peggy, thank you. I so much now understand what you have been through. Your encouragement and understanding really touched me.
I am so lucky that Ann lives here in the Melbourne area. She has been wonderful. It is good to be able to talk to someone and her experience has been like a mirror. She has already filled me in on a local hospice. I am trying to get set up with them now, have to get Moffitt to order it.
Ken is off the trial drug. The tumors in his liver are progressing at a terrible rate. The index tumor was not measured, the report said it merged with 2 others. There are just so many, it seems mostly in his right lobe, but also many smaller ones in the left lobe of the liver.
His BP was very high, 175/105. I am concerned that he may have had a small stroke on Tues. That was the day he was so confused, really out of it, was staggering, and his speech became slurred. However, Weds. morning he was back to "normal". The dr. was not concerned, just said to start taking baby aspirin. I am just worried that he could have a stroke that would destroy what quality of life he has left. Does anyone know of preventive treatment for strokes? Does it seem like he may have had one?
Again, the caring that has been shown has been such a help. I really did not even realize how much I needed it. Thank you so much.
Karen H
Sometimes life leads us down roads paved with gold....
in CAREGIVER RESOURCE CENTER
Posted
I would like to take this opportunity to again remind all Vietnam veterans and their families about the Agent Orange Fund. This fund cover LC and other cancers and conditions. The veteran can receive treatment, get disability compensation and life insurance. There is also a survivor benefit for the spouse. Please contact me by PM if you need more information.
Karen H