amylea

Hi everyone,

Me again. Have had a very difficulte last few days, as many of you understand. Mom has gone down so quickly. She is so jaundice. Her eyes are glowing and leaking. He is sleeping probably 23.5 hours of the day. The other 30 minutes a day are when people (like me) are talking to her. She has no muscle strength and can’t walk at all. Thank God that Gary is able to work from home so that he can help me. My brothers have really stepped up to the plate. One of my brothers has been spending the nights with us. It is so comforting to have him here. The nurse came Tuesday and said that Mom only has a few hours/days. I spend most of my time sitting in a chair by her bed watching her breathing wondering which one will be the last. I am thankful that she isn’t uncomfortable. She is aggitated, but not uncomfortable. As I think back, I see symptoms of this coming on, but man it sure seems like this stage came on so quickly. I know how hard she wanted to hold on to see Max, but that just isn’t possible. Maddy is really struggling. She seems so afraid of Mom, which I totally understand. When I watch her sleeping her face looks like she is already gone. My heart is breaking. Of course I know that there is no turning back from this, but I wonder how I will feel when she is gone. Some part of my brain thinks, she is still alive, could she possibly come back? I KNOW that isn’t possible, and I know that sounds crazy, but I just can’t believe that she will be gone. My mom and I have never lived apart. My heart already aches because she is gone.

I called the oncologist and talked with her and talked with the hospice nurse about many of my questions. They were very helpful. They both were able to reassure me that unfortuantly this is the path that cancer takes sometimes, and that I am doing and have done all that I could to help her. The nurse asked me if I had ever thought about being a nurse because I have that special touch that has helped mom. While I told her that she was crazy, and that I could never be a nurse it did make me feel better .

I am so thankful for all of you here. My heart breaks for all of us that we are taking this journey together, but it sure is comforting to know that you all understand.

Please keep us in your prayers. Amy

Lainy,

Mom’s oncologist has quite a few patients with cc. The surgeon who initially did Mom’s surgery recommended her. The surgeon was from John Hopkins, and dealt with cc a lot. We feel quite sure about her experience and knowledge about cc. She just knows that Mom doesn’t want to have any more aggressive treatment. She doesn’t want chemo or radiation. Both of them have had worse side effects for her than the cancer itself. She recommended hospice to us quite a while ago, since this disease is so unpredictable.

I wish that I had been more knowledgable about the whole process with cancer before this started, so that I would know what to watch for. Although I think cancer has a mind of its own. I know that everyone is different.

When Mom was released from the hospital last week the head oncologist for the cancer ward told me that with her symptoms and disease progression that she probably only has a few weeks left. I have been so hesitant to write that, because I don’t want to believe it. Although now as I see her deteoriating, I believe that he was right. I asked them not to tell Mom though because I didn’t want to break her spirit. I was too emotional at the time to ask him a lot of questions, because he caught me off guard. I wish that I would have been a little more on my toes, but it is too late now.

I guess that my main conern is wondering if it is really important for me to get answers now? We know that Mom is probably at the end of her battle with this horrible disease. Am I just being selfish wanting her to go the dr so that I can get answers? Even if there is something, she won’t want to do treatment for it.

Whether we go see the oncologist tomorrow or I call her, I do hope to get a little help from her.

Amy

Well, here I am again a few days later, but wow have we been through some serious changes. I have been so reluctant to type this hoping that each day would get better, but things aren’t gettting better. Mom has gone down hill so quickly. She was released from the hospital on Saturday, August 30th and she was better for a few days. Earlier this week she was doing much better. The last few days have been awful. She is turning yellow. The nurse came today and had to insert a catheter. Mom had not urinated since Friday. How do these things progress so quickly? I don’t even know what it is that is progressing! The last MRI early in August showed that things in the abdomen were stable, the only new thing it showed was the tumor on the spine. Something is obviously going on though. The hospice nurse and the oncologist aren’t surprised by her jaundice. She has an apt with her oncologist on Tuesday, but I am not sure that she is going to be able to go. She is so weak and confused. It absolutely breaks my heart to typs this. I am so confused about what is really going on.
Please pray for us.
Amy

Thank you for all of your feedback!

Kris, I am so sorry to hear that you went through the same thing as Mom! That is why I love this group, as unfortunate as it is that so many of you go through pain and discomfort, it is some sort of a relief to be able to compare all of our ordeals, and know what is “common.” How are you feeling on your new chemo?

Mom was a little better today, and I mean little! They have her on lots of different meds. They have her on a “GI cocktail” which really seems to be helping relieve all of her throat troubles. They took an x-ray of the belly and didn’t see any blockage, which is always a relief. They did a chest x-ray today because she is having a little trouble breathing, but I think that goes along with all of the pain.

Now they have her on oxycontin and oxycodone, instead of the patch. They said one of those is for chronic pain and one is for break through pain. Does the pain ever seem to go away? Do you all mind me asking who here is on pain meds? I am just worried about Mom getting too many pain meds. Where is the happy medium? You hear so many stories about people stop taking most of their meds and feel so much better, but is that possible with this sort of disease?

My news: went to the dr today myself. I am now 7 months along. The baby is measuring big, so they are going to do an u/s in 2 weeks. May not make it the whole 9 months. Don’t want to grow a toddler .

Maddy and I spent most of the day with Mom at the hospital. The hospital has valet parking, which makes life so easy. Well, I came out today and they had wrecked my car! They didn’t even bother telling me, I just happened to notice that the bumper was bulging and cracked up! Wow, that wasn’t great. They weren’t at all surprised when I as nice as possible told them that we had a problem. I know that in the grand scheme of things this is NOT a big deal, but boy is it a big pain!

Thanks again for all of your thoughts and prayers.

Love, Amy

Hi everyone,

Thank you for your posts.

Marion, We think that Mom’s cc was more than likely caused by her exposure to Thorotrast, although as we all know… who really knows?!?!?

Patty, I agree with you 100%. My mom is definitely the kindest person I have ever met!

Sounds like there are lots of different backgrounds that we all come from. I must admit that I asked this as sort of a selfish question, the genetic question frightens me some. We don’t have anyone in the family with cancer. Most of the deaths in our family are caused from heart disease, so that has always been my main worry. As we all know, life is full of some curve balls!!!!!!

Thank you again for your responses. Big hugs to everyone here!!!!!!!
Amy