I am so sorry to hear of your dad's passing. I understand when you say this is the hardest thing you have ever gone through. Losing my dad was the hardest thing I have ever experienced. I wish there were something I could say to make it easier for you. Just know that many prayers are going up for you and your family.

Lisa Ann,

I just want you to know that my prayers are with you and your family at this time. I lost my father in January, and I know how you must feel. Hold his hand and tell him everything you want him to know. He will hear you. My father was completely coherent until only a few minutes before we lost him.

Praying God will give you and your family a peace and comfort during this difficult time.

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(11 replies, posted in In Remembrance)

Thank you for the many kind words and support. Each response has touched my heart. Lainy, the poem was so very fitting and beautiful. Marion, you found the perfect words...grief is the price we pay for love. I will never forget that. And to those who share in the heartache of those terrible images of pain and suffering, I thank you for the encouragement that it will fade away. I have found myself remembering more of the good times lately. It is all still fresh in my mind, but I am able to think a little more of all the fun we had together. But of course, then I am saddened even more missing those times. My oldest daughter has really handled things well and keeps me focused in the right direction. She is only 5, but while praying before breakfast, she began to cry. She told me she missed him, but then she said, "But mommy, I'm happy too because I know he is all better now."

Margaret, I am definitly going to take the suggestions given and make sure that he is talked about often and that we always have special pictures and videos on hand to look at often. I'm so sorry to hear of your loss. My youngest daughter is 2 1/2 also. That is so hard. But what a wonderful gift that your grandson was able to see. Thank you for your encouragement.

Each kind word has meant so much. Thank you all.

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(11 replies, posted in In Remembrance)

My dad lost his battle last Tuesday, January 3rd at 9am. My mother, my husband and I were by his side. As many of you may remember from my other posts, he has had a roller coaster battle. He defied what most doctors said, and did not "follow the rules" as to the way most people progress with this disease. But, that was how he lived his life. He was a very unique person. He was full of life and loved to laugh and make others laugh. You couldn't help but to love him. He was a fantastic artist. I am so very thankful that the last work he did was a beautiful pencil drawing of my two girls. What a wonderful legacy he has left to them. He and I were always very close. He would take me out to lunch once a week after I got married just to spend time with me. He was a wonderful father. I miss him so much. The hardest part is trying to get the images out of my head that were his last few hours. He was completely coherent all the way to the end. He had to get into a hospital bed on Friday (4 days before) only because he could no longer get up and out of his chair. From that point on, he declined rapidly. He began to get very restless. His heart rate increased dramamtically. Then he couldn't swallow his medicine. We saw the signs of mottling. Jaundice set in. Lastly, his lungs filled with fluid. I must say it was a terrible thing to watch and not be able to do anything about. We tried every medicine available to us, but it didn't help. He tried to talk to us but couldn't. But he knew we were there and how much we loved him. In the last few minutes, a peace came over him. That was such a relief to us. I think he just fought all the way to the end to stay for my 2 little girls. He loved them so. While my heart hurts and is full of grief, I rest in knowing that he is no longer in pain and is in Heaven with our Savior. As my daughter said, "He is dancing and playing now." I will always have questions as to why my kids will have to grow up without their grandfather who loved them more than anything in this world. But I know all things have a reason and a purpose, and all things are for the glory of God. Dad's service was not typical. It was perfect for him. The message came from Genesis 1 and told how God was in the business of artistry when He created the Earth. My dad is with the Master artist now.

Thank you all for the words of encouragement and help you have given along the way. This has been the hardest thing I have ever had to go through, and I will be forever grateful to this site and the amazing people here.

Sorry this was such a long post.

Well, here we are a month later and dad is still here! They did not think he would make it to Thanksgiving. This has been the strangest thing I have ever seen. No one knows what to think anymore. One day we are afraid he will not make it through the night, and the next he is much better. Then it starts all over again. His hospice nurse has even commented that she has never seen anything like it.

The only constant is that he is getting much weaker. Still able to get up to go to the bathroom, but he has to use a transport chair. They tweaked his medication and now his nausea is completely gone. He has been eating sweets constantly. His hands were "blotchy" the other day, and he now has some apnea while sleeping. Most of the time when he is awake, he says he is "fuzzy." He knows exactly what he wants to say, but sometimes the words come out wrong. He is still seeing things, and people, but no one he knows. I was so very fortunate to have about an hour with him last week where he was completely coherent. I was able to tell him things that I wanted to make sure he knew. That has really helped me. Although, I still feel like it isn't real. Mainly because he has always gotten better through all the MANY close calls he has had over the years. This seems like one of those hurdles. I don't think I have fully accepted it yet.

My mother is working so hard to take care of him. I try to go over each day to help, but with small children, it isn't as easy as I wish it were. And one of the biggest things I think I have realized through all this, is that no one can fully understand how much a person, as well as the caregiver, goes through with this cancer. It has been one of the most heartwrenching things I have ever had to see. It is the hardest to see my dad when he is no longer himself. He has always been the "clown", making jokes and having fun. To see him this way, not even able to speak coherently at times absolutely breaks my heart. They say he may only have days, but he has fooled us many times before!

Sorry for such a long post. I just felt that it might help someone else out there who is looking for answers like I have. Sometimes just reading of others' experiences can help. I hope maybe this will. Again, thank you to all who have been such an encouragement to me through all this. What a blessing this site is!

My father has begun to have lots of confusion and has become very weak. He is still not in a hospital bed, but could barely walk to the bathroom today. He is eating well thanks to a medicine change, however, even though he sleeps most of the day. Now to the odd question...he claims to be seeing a black band around his head when he closes his eyes. What does that mean? Is this something that happens close to death? He has been very agitated the past few days as well. Also we have noticed that his pet dog has not wanted to leave his side the past few days. This is not usual. Any thoughts?

Lainy- Yes, dad is under home hospice care. The nurse comes at least 3 times a week and usually more. Since I last posted, they have tried one last combination of medications including steroids. It has seemed to help slightly. He had 2 really good days over the weekend, and even kept some food down. However, since Monday, he hasn't been able to eat much and is still throwing up from time to time.

Marion - Your information was very helpful and makes sense. My dad continues to lose weight at a moderate speed. I am not certain that his body is processing what little amount he is now able to keep down.

He had his PT/INR checked again and it was better at 2.4. They also checked ammonia levels and they were normal. His blood pressure and heart rate had been fluctuating a lot, but that has gotten better. But the odd thing is that he is SO tired. With all his vitals better, he is more exhausted. The nurse said that the disease can do that.

It is so hard to figure out where we are with all this. He seems to do well for a few days, then bad again. The only constant I can see is that he continues to get weaker. Even getting outside in his wheelchair for a ride down the street with his grandbabies completely wore him out. He still is not in a hospital bed, but I'm afraid that may be coming.

Thank you all for your support. You will never know what it means to me and my family.

Marions- My dad didn't get up and move around afterwards, but his nausea has certainly increased as he has gotten sick several times today already with anything he tries to drink. However, it does not appear that any of the food has come up. I wonder if it is like you say, just sitting on his stomach causing the nausea to continue and worsen. He has a bowel movement about every 4 days. As of today, it's been about 3 days since the last one. There seems to be no rhyme or reason to anything anymore.

Also, does anyone know if lack of food can affect blood levels? He is on coumadin blood thinner, and all of a sudden today his level was 3.8 which is VERY high. Could there be a connection or does the cancer cause this?

I'm sorry to ask so many questions, but this site has proven time and time again to be the best resource of information about this horrible disease. I value each and every one of the opinions I receive. Just knowing that others can fully understand is so helpful.

Things have changed again. Dad was feeling a little better last night and asked to eat tomato soup with cheese toast. We were nervous about him trying it since he hasn't been able to eat in 5 days. To our surprise, he kept it down! However, first thing this morning he was sick with the first sip of liquid. Has anyone experienced this? We are so confused! Is he is coming out of this, or is this normal? This whole experience is such a roller coaster ride, and it is taking its toll on everyone. I'm afraid to get my hopes up, only for them to come crashing down again. So many doctors have told us that they have never seen a patient like my father. He has become the definition of rare and unusual conditions. With that being said, that is why I wonder if anyone else has seen these type of symptoms.

My father has tried so many different types of nausea mediciation, and some will give him a bit of relief, but nothing has seemed to take it completely away. He has tried the one that dissolves under the tongue, along with creams, pills...you name it. He had been on a regular cycle for weeks where he would be sick for 4 days and then better for 3. The doctor seemed to think his body was rejecting the food and that would make him feel a little better for a few days, so he would eat. Then the process would begin all over again. He has just this week not been able to keep any liquids down, and he has not had his normal "better days."

I have spoken with the nurse (who is absolutely amazing!) and she said after consulting his doctor that the blood pressure variations are just part of the cancer taking its toll on his body. They have tried just about everything possible. I just am not sure what to expect now. I wonder if he is getting any value from sips of water he takes before he throws it back up. I will have to check on the syringe driver. That sounds like something that might help.

My father took a major turn for the worse this past Monday. He passed out several times. His blood pressure was so low that at times we could not get a reading. Usually, he will pick back up in a day or 2, but this time he hasn't. He can't keep any solids down and over the past 2 days, cannot keep in any liquids either. He is not bed ridden, but can barely walk now. Things changed almost overnight. It has been so strange. He has had so many "close calls" that it doesn't seem real that this is it. I don't know if hospice will put an IV in or not since he cannot hold liquids. I've been told that their rules have recently changed and that they can, but is that just going to prolong his suffering? Otherwise, how long can he survive if he keeps throwing up anything put on his stomach? We just are at a loss with what to do. What can we expect?

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(13 replies, posted in General Discussion)

Thank you all for your information.

Mlepp0416 -They are going to check my dad's blood tomorrow to see if there are high levels of ammonia in the brain. He has progressively gotten worse just in the past 2 days. He becomes disoriented and sees strange things that aren't there. He had to go change his shirt today because he said that he kept seeing odd shapes "jumping" off his shirt at him. He knew it wasn't real, but it bothered him severely. It's like he will be fine one minute, and the next completely out of it. Hoping the results tomorrow show that it isn't just the cancer progressing. Guess we'll wait and see.

Lainy - Thank you for the book suggestion. I am looking into that. I found out that there is also a place called the Caring House that helps with children in this situation. I plan to check on that as well. 

Thank you for all the suggestions and comments. Without them we would never have known to ask about these things. And most of all thank you all for the encouragement. I am struggling, but finding ways to get through it for now. Each day brings new challenges, as you all know.

13

(13 replies, posted in General Discussion)

My mother spoke with the hospice nurse today, and it was not good news. She noticed a significant change in dad's condition since last week. She believes the confusion and difficulty speaking clear thoughts (and strange movements) are all from the disease. I spoke with him several times today and he sounded really good, but inbetween those times my mother said he was a little "spacey."  It is so strange to see him up and getting around fine, and know that things have progressed to this point.

We are about to receive the dreaded blue booklet. The nurse is going to be visiting more often. I have not let it sink in yet, because I know if I do, then I won't be able to take care of my family like I need to. I have small children, one of whom is my dad's best buddy. She begins Kindergarten next week. I have no idea how I am going to help her through this, when I know I will be a wreck. All I know is that my heart goes out to everyone going through this horrible disease, and their families. It takes away so much, and so quickly.

Thanks to all of you for your helpful responses. It really has helped with knowing what questions to ask. It really helps to hear of others experiences and be able to compare them to our situation and gather as many answers as possible.

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(13 replies, posted in General Discussion)

Thanks, Lainy. My mother plans to talk to the hospice nurse tomorrow to see if we can gain any more insight. He takes nausea medication already, but he still has a lot of problems getting sick. It seems to come on so fast. I think she is going to ask about the booklet as well. My dad said today that he thinks his time is getting shorter. He says he can't explain it, he just feels that way. That is very concerning to us. It just seems that he has gotten worse in the past few weeks. He's having trouble carrying a conversation, whereas a few weeks ago, that was not a problem. We are very fortunate to have a wonderful hospice nurse who has become not only a great caregiver to dad, but a good friend as well. Just wish there were more solid answers out there for everyone going through this. Cancer encompasses so many things that are "unknown." My heart goes out to all who are going through this.

Has anyone noticed or had experiences with strange "hallucinations" during anytime of this disease? My dad is beginning to experience strange things and we cannot tell whether or not it is the disease or the medication. He will grab at things or look as if he is holding something and there is nothing there. He is on a large amount of pain meds and anxiety medicine, so it can be hard to tell at times what symptoms are coming from the cc. He is under hospice care and is "at himself" about 50% of the time. He feels ok and can get around well some of the time, and the rest of the time is usually sleeping or nauseated. I have heard that this can be common once things have progressed, but still uncertain.

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(4 replies, posted in General Discussion)

It has been a long time since I have posted and things have changed dramatically...for the good. A brief recap; hospice was called in to help manage my dad's pain about 2 months ago soon after we found out the cancer had spread to the lungs. He was not able to get around without help and pretty much slept all the time. Well, now it seems that the hospice nurse has been able to find just the right combination to manage the pain. We were all able to take our family vacation to the beach to celebrate my dad's 60th birthday!!!! It was a wonderful time and has given us all such great memories. He had a rough go of it for a few days, but he really pushed through it and got better each day. Since we've been back, my dad has been feeling great and is even walking around without a cane. It's like seeing him how he was years ago. I just hope that it will continue. In the back of my mind I know what is coming, but I am so thrilled to see these good times that we thought would never come again. God has truly blessed our family by allowing us to have this great time together, and I am so thankful for all the prayers that were sent our way.

Well, it seems that my dad still has pneumonia. However, it is steadily getting better without medication, so that is a good thing. But on the other hand, his pain has increased tremendously from the spreading of the cancer. The doctor said it is progressing faster than they expected. They called hospice in this past week to begin pain management at home. It seems to be helping and he is actually up and about more than he was previously. The nurses are great. "Hospice" just seems so final. It has been hard for the family dealing with that. But we are all working on taking it one day at a time and trying to make the most of each day. Still hoping for a wonderful birthday vacation for dad in April!

My heart breaks for you and your family. Thoughts and prayers are with you.

I am so sorry for your loss. My father is battling cc and I can't imagine the sorrow you must feel. Thoughts and prayers are coming your way.

Small world...my father is being treated in Huntsville as well. I have found that usually by the 4th day afer chemo, things begin to settle down. I certainly hope that will be the case for your husband. Keep us all updated on his progress. We are keeping our fingers crossed for successful treatments!

You will find this website to be such a helpful place. I am sorry that you had to find us though.

My father was given the gemzar/xeloda combination. Although, I have read of many people who have taken the same ones you mentioned. Each person handles the chemo differently with this type of cancer. What works for one person, may not for another, so there is not any particular combo that everyone begins with. Hopefully that combination will work for your dad!

When we got the reports on my father, we did the same thing that Lainy mentioned. Google the terms, and that should help tremendously. A lot of the things mentioned in the CT scan you wrote about are very familiar to me as I have seen the same mentioned for my father. Take note if the bottom reads "findings" or "Impression." That will give you a better and easier understanding of what they found. At least it did in the reports we have seen.

Update - My dad went to the doctor today. Turns out he has pneumonia in both lungs. Luckily he was able to go home and did not have to be hopsitalized. I hope he will be able to fight this off relatively quickly. However, I know with his condition it may take awhile. He is pretty determined to wait on the vacation until his birthday in April. I am hoping that all will go well and he will be able. Any similar experiences with pneumonia?

Dear Andrea,
His appointment was only for lab work, and not to see the oncologist. He isn't scheduled back to see him for 4 more weeks. However, when he was checked 2 weeks ago, he had a slight wheezing and was told that it was most likely from the cancer that had spread to the lungs. He does not have any stent in place. The cc he has is not located in the bile duct, he has several tumors within the liver. Since he isn't eating well, maybe the lack of nutrients could be the culprit like you mentioned. I'm guessing he will end up back at the doctor before his scheduled appointment in 4 weeks. In the meantime, maybe I can get him to try the supplement drinks to see if that helps!

To all,
Thank you for your responses. The information is certainly helpful. I feel like taking a trip sooner is most likely the better option, just really hoping that a birthday trip was possible. Plus, waiting for warmer weather would be nice too. Just in the past 2 weeks, he has seemed to get progressively worse. I posted yesterday that the wheezing had worsened, and today he is out of breath just from a short trip to the doctor and the store. Is it normal for the symptoms to progress this quickly? Or is this something that could go on for a long time?

To Andie - He takes supplement drinks from time to time but nothing consistantly. When he does, it is usually because of his blood sugar levels. (He is diabetic also.) His appetite has lessened. Not eating often, but when he does, he eats well. I will mention that to him.

Lainy, I also wanted to mention that I have been following many of your posts, and the way you stayed so positive throughout Teddy's illness was an inspiration. I am so sorry for your loss. Thank you for all your help on this site!

Again, thank you to everyone for your insight. I am looking for any and all information I can get.