my mother's behavior diagnosis of stage iv lung cancer

[cara]

Hello my name is Cara.

My mother is taking a combination of carbo platinum, taxol and avastin. her lung cancer has not effected her pulminary function, but she does have a metastisis to the shoulder. the dr.'s feel that since she has had radiation and the tumor has shrunk her pain should be very much reduced, yet she can not move her arm and is in bad pain still. it is concerning to me that there is no pain medication that has worked. she has taken quite a bit of combinations, including pain patches. The pain medication has caused a host of complications. Ironically she is taking no pain medication currently and only talks about her shoulder pain when asked, but she still insists that she is in a lot of pain. she has seen many very good orthopedic oncologists and radiation specialists and all say that they just do not know what to do for her. in addition she has lost her desire to read, a previous passion, talk, laugh, talk on the phone to us, her family and basically since her life has changed just does not want to walk, eat, drink or do just about anything. We, her family are her cheer leading squad. She listens and tells us she will try to eat, but does not. This "not eating" actually started before she started her chemo regimine. she can not will herself to do anything and the burdeon for lack of a better word falls on my father who wants desperately for her to get well. Her legs can barely hold her up due to not walking. She has no muscle tone, no umph to do anything to help herself. She is harming herself by not drinkoing sufficuently. She landed herse;f in the hospital with severe dehydration. I am frustrated with her lack of desire to try abnd help herself. She insists that she wants to live, but her actions contradict what she says. She is complaining of TERRIBLE anxiety. she can not calm her internal butterflies down. She takes Xanax and it slurrs her speech, but does not seem to help. My father is trying everything he can to help her, but he is just dragging her around since she has no motivation. She says that she is concerned for him, but I am debating if this can be true since all she does is discourage him through her non-involvment in her life and the life that they share together. they have always had a good marriage, but please help me understand what is happening! The. Dr.'s are encouraged with how she is responding to treatment, but I feel that with her state of muind she will never feel well or accept good news. Actually the whole family is thinking this. Please help me gain perspective. Thank you.

[Joppette]

Hi Cara,

Oh my goodness, this is complicated. I don't know where to start. First off, when someone is told they have stage IV cancer, it's very difficult to find hope. I have two experiences with this.

The first was my Mom. She was diagnosed stage IV, with a 3 week prognosis. She refused to believe them. She had brain mets with seizures. She refused chemo for the lung cancer, but accepted radiation treatment for the brain mets. She lived 8 months longer that what they predicted. If she had taken chemo for the lung cancer, it's likely she would not have lived as long as she did.

Then there's my husbands Mom. She also had brain mets. She refused all treatment, and she was very bitter about her disease. She did not suffer much, but died six months after diagnosis.

Then there's me. I was diagnosed at stage 2B. I had a lobe removed, and chemo regime like your Mom. I was in terrible pain from it, but got through it. I did not have mets so I was doing good, other than the side effects from the chemo.

I just want to share that my Mom had a lot of pain. They sent her to pain clinics, and basically said there was no reason for her pain. And yet she suffered. We thought the pain stemmed from the surgery and the cutting of her ribs. We finally got Hospice involved, and they took over her pain control with pain patches and morphine in a liquid form. It gave her enough comfort to help her get through her final months here.

We can't know all the side effects of this disease. Some of us suffer great pain, some of us do not. If she is in pain, I suggest Hospice to help her with that. But Hospice will not help if she is being treated with life saving treatments.

My heart goes out to you. I pray for some answers for you.

MI Judy

[Treebywater]

Cara,

Welcome to the boards. I'm so sorry you have a reason to be in this 'club,' but I'm glad you've reached out. This is a great place to get encouragement and find hope!!! I resonate so much with your post because I remember so many similarities when I walked through things with my Mom. I remember my Mom also having terrible pain that was very hard to resolve and she had a very hard time keeping her spirits up at different portions of the game too.

What is hard for us as caregivers to understand when we want to cheer our loved ones on and we want to bring them hope is that a huge, huge gut-punch has just been served to the person that we love and people respond to that differently. Add in debilitating pain to trying to wrap your head around such a difficult diagnosis and well... It just sucks!!! I remember so wanting to offer my Mom hope, and some days she could get on board with that, and others she couldn't.

Do encourage her and your Dad (and you if you go to appointments) to talk to the doctor about this. If the Xanax has side-effects that are unpleasant see if there are other prescriptions that might help her with the anxiety and depression. Also, keep communicating about the pain. A lot of times it's a matter of trying different combinations of things until you can find something to keep the pain at a doable level. It sounds like you've tried many combos. KEEP asking and letting them know that the pain ins't under control. Bone pain can be awful from what I understand. Have they considered doing radiation to alleviate that at all? I know that is sometimes done. I also remember finding out quickly that my Mom had to get ahead of the pain. Sometimes my Mom would want to wait to take the next dose, but waiting until the pain was worse always made it harder to get ahead of.

I'm sure your Mama DOES want to live, but she's processing SO MUCH right now. Keep encouraging her. Keep giving her hope in whatever little and big ways you can. Read through the stories here and encourage her with some of the amazing survivors we have here.

At the same time, give her room for the sucky, awful emotions too. In my case, I wish I'd done a better job of being a safe place for my Mom to talk about being scared, and being sad about what she was losing each day because of cancer, and about being sad about what she would lose to the cancer. Cancer sucks. And sometimes it just feels good to have that validated.

I know it is both frustrating and scary to feel like she doesn't want to live and isn't trying to get well. Remember that you can't choose how your Mom handles this. It's her road to walk. I can tell from what you've writen and from your just being here that you love her very, very much. Keep her mindful of that.

The not/walking, not-eating part of things must be so hard and scary and discouraging for all of you.

How long ago was your Mom diagnosed?

[jaminkw]

Welcome. Your Mom's and your family's struggle sounds awful. I was reading the previous post and recalled something I learned when I was in training to be a counselor. I am a very optomistic person and do "cheerleader" when someone else is down very well. What I learned is that sometimes that doesn't work at all. Much better to come in and empathize first. That's hard to do when you see your Mom so negative all the time. But getting her to talk about her pain, her fears and whatever else is going on would be good. Then, you can come in with the encouragement. But I believe first she needs to have someone hear and understand what's going on with her. Getting her to open up may be a challenge. The trick is to identify the feeling at the time and reflect it back. Like "that sounds awful, it must be terrible to be awakened in the night with pain all the time." Or, "I can't even imagine what it's like to be so weak, you need help walking." You get the idea. I think it might be worth a try.

Good luck to you and yours no matter how you proceed.

Judy in KW

[MilliBr1]

Hi Cara,

So sorry to hear what you and your mom are going through. My mom also became very quiet, which we all found very frustrating. Now, I wonder if she was afraid to talk as her emotions may have gotten the better of her and she didn't want to upset us. My only advice is just to continue to talk to her. I wish I had talked more and shared what was in my heart with her.

Also know that this is not unusual, since my mom I have heard many say that not talking is common.

[julieann]

cara- my dad is in the same situation..i have been searching for a relief for pain for him for 6 months! he is strong but has lost his motivation months ago. now he cannot work and doesnt want to do anything. i have been so desperate to find some relief anywhere..stay strong-i will be thinking about you!