So frustrated :cry:

[Sandoster]

Donna is my partner of over 23 years. She has NSCLC adenocarcinoma Stage IIIB/now Stage IV. She went from a pleural effusion (malignant) to pericardial effusion (benign) to abdominal effusion (malignant). They have never found a formed tumor. She is now on Taxotere and feels terrible. She has lost her appetite and is skin and bones. it is so hard to see her this way. She is starting to force herself to eat a bit better after a friendly lecture from her onc's PA. Her doctor has never discussed prognosis (since August 2004) and I am afraid to ask. I am so scared that what little hope she has left will be dashed if I ask about prognosis and we get bad news. Donna very much believes that God will heal her. I am so scared how she will feel spiritually if she just keeps getting worse. I feel like I am doing a tightrope walk all the time. None of her 5 children seem to understand the gravity of her condition. Her daughter (the youngest) is the most aware, but she lives 1200 miles away. It is Donan and I fighting this on our own and I just am so tired, depressed and frustrated. I go to work as long as she feels okay, but then I worry about her all day until I get home. I stayed home at first for 2 weeks but she seemed mad at me like I didn't believe she would be healed, so I went back to work. I am so afraid to have her spend so much time alone, but she doesn't want anyone around. Helpless is what I feel most of the time which is bad for me because I like to fix problems. I love her so much it is SO hard to see her like this.

[Don Wood]

Welcome! Sorry about your wife. I hope she will let others help soon, so all the burden doesn't fall on you. If you ask for a prognosis, you will be told a year or less. That is standard. There are many on this board that have defied that, so take hope. My wife is now 2 1/2 years from diagnosis and clicking along. Keep us posted on how you two are doing. Don

[rogfam]

I just want to cry reading your post. I'm so sorry you're so alone in this. There is ALWAYS HOPE. And yes, always believe with her in her complete healing. Faith (and hope and PRAYER) is what has gotten my mom to this point, of being a five year survivor. God hears all of your prayers, and He knows all of your hurts. We can't see it right now, but God has a plan, some day we will see the Masterpiece that He's been working on all along.

praying for you and your wife

Christy

[Maryanne]

I am so sorry for what you are going through. Being a caretaker I could understand how you feel. You feel helpless at times because she feels she can do this on her own. She doesn't want to burden anyone.

But she has to know that she has support of people who love her and care about her.

You said she has 5 children. Is there any that lives near her, who can come and visit and see for his or herself what she is going through? No mother wants to be a burden on their kids. This is normal for a mother to react like that. But this is a time when the kids have to know, that she is in such a fragile state and needs them there for support. Their support along with their love can do wonders.

Is it possible for her daughter who lives 1200 miles away to take some time off and come stay for a little while? That would lift her spirits up.

Belief in G-d that you will be cured is half the battle, but you need the love and support of your love ones to help get you over that hurdle.

Maybe I am just rambling, but I feel everyone should get involved in this. She needs help.

I know you have strong shoulders, but you should not have to carry the load all yourself. You need help and support also.

Katie, also gave some good advice.

We are always here for you, Please keep us posted.

Maryanne

[Ry]

Your post brings back old memories...I remember being where you are now. It's not a good place. I am sorry you are having such a hard time...it will get better, I promise.

Don't ask about the prognosis, it would most likely be wrong anyway.

Now lets take care of the practical stuff...

She needs to get her weight up. Ask the doctor about Megace to improve her appetite. Others have reccomended Weight Gainer powder that you get at the health food store. Mix it in with her food and it will add calories. Make sure she drinks lots of fluids. The suggestion on someone checking on her is a good one. I went to work but my middle daughter was a good little caregiver and would take her dad soup and check on him.

I know its a hard time...I remember being brought to tears over the littlest thing. Hang in there and know we're all here for you.

Rochelle

[Tammyge]

Definitely keep the faith and hope - that will get you through. Try getting family or friends more involved - I know its hard and maybe some family ise keeping distant as they are already in the grief stage (had that problem with my sister). I found out the more specific I was in the help I need with family it was a bit easier.

I discovered that doctors don't like to give progonsis at all - so if you do ask privately you may not get an answer.

Live every minute to the fullest and take a few minute break for yourself - it will reenergize greatly!!!

[Ann]

So sorry to hear that both you and Donna are having such a rough time of this. I pray things get better for both of you. Unfortunately, I have gone through several of the problems you mentioned and will be happy to share my experiences with you. First, as for the prognosis. I agree with Ry that sometimes it is not good to know, as the prognosis is often wrong. My husband never had the desire to ask (or know) how long the doctor thought he had. I, on the other hand, had to know what I was up against. i talked to the doctor, got my questions answered and never shared the information with Dennis, as he had no desire to know. As for the children....all three of my children were in total denial regarding their father's illness and would not come to grips with the fact their Dad was terminal. When I would share information with them from the doctor they would never seem to totally hear what I was saying or believe me. One son even accused me of being "so dramatic." Well, I asked that son to go to the next doctor visit with us and when the doctor told us that the chemo was no longer working, my son turned pale and almost passed out! From that point on, he realized the severity of the situation and was almost constantly at his Dad's side. Maybe you should ask one of the children to talk to their Mom's onc or even better accompany her on a visit. As for the time Donna spends alone, please take Katie's words seriously. Leaving someone totally alone in this condition can lead to some very serious secon hand problems that you son't need to deal with right now. Under the FMLA (Family Medical Leave Act) you should be able to take time off from work, if resources allow. Otherwise, I would find a family member, friend or a nurse to spend time with Donna. I am so sorry you are dealing with all these problems. I'll keep both of you in my prayers.