another update…

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!

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.