Hi. I have stage 4 adenocarcenoma - original site, Lung

[MelanieLR]

After almost 4 years of having every test imaginable, 6 months ago I was finally told that I had stage 4 adenocarcenoma that originated in the Lung. The doctors said that it was very advanced & gave me 2 weeks to live if I didn't start very aggressive chemotherapy immediately & undergo gamma knife radiation surgery on the brain tumors. The disease was pretty much everywhere when they finally found it. For nearly 4 years I was told that I was fine & sent home with anti-depressants. Well, I went through the chemo & the gamma knife. For the past 6 months I've felt worse than I ever have. The doctors told me that at best, the treatments I've been through might have bought me another 6 months. I guess I'll see what my quality of life is for the next few months but frankly at this point, I can't see myself going through any more of the treatments. I'm only 44 & that kind of stinks but I just don't want to spend at least half of the remainder of my life in that kind of misery.

My husband is having a real problem dealing with any discussion of my death & rather than being supportive, he's so angry at the cancer that I bear the brunt of his anger. He's not physically abusive but he's just so angry all the time that everything sets off a temper tantrum.

I know how difficult it is to watch someone die of this disease. I was a caregiver for my Mother for 8 months as she was passing from the exact same cancer I have. I truly believe that it is harder for the loved ones than for the patient to accept the eventual mortality - at least it was in my experience. I just don't know how to talk to him anymore. I most certainly don't want to spend the remainder of my life being scolded or yelled at.

If anyone out there has had similar feelings, please let me know how you dealt with it.

Thanks!

[SDianneB]

Melanie, I am so sorry you have to go through all this. Truly. The only thing I could advise would be that you check with the people where you are being treated and get the name of a counselor for both you and your husband. It sounds like you need a LOT of talking to happen so that he can begin to understand and help you. (Might not hurt too to remind him that you could very well outlive him. He could walk out the door tomorrow and get hit by Becky's beer truck for all we know.)

It's a tough time, full of hurt and disappointment, but I know people who have turned it into a time of new understanding and closeness. I wish you the very best.

Di

[Don Wood]

Melanie, glad you found this spot, where you can vent and get support. I can't relate to your husband's actions although I know there are others in this situation. People go crazy dealing with cancer, whether their own or a loved one, and each responds differently. I wish your husband could understand that he will regret being angry when he could have supported you in a loving way for whatever time you have together. He really needs to talk with someone -- a counselor, a friend -- and work through the anger, so he can be the loving, supportive husband you need right now. My best to you. Don

[Elaine]

I am so sorry to hear what you have been through and what you are going through.

My husband, too. has sometimes lashed out because of his fear of the future, his frustrations with not being able to prevent what I am going through and his overall anger at the circumstance. Usually, I am not the brunt, but on occasion I have been. Finally, we were able to talk ab out it and he is more aware of why he is doing it. It has nothing to do with me, but is because of the things I mentioned earlier. Maybe your husband would be able to talk to someone and that might help.

Don Wood on the board might be someone who could also add insight to your situation.

I don't have any magic words or advice for you. I wish I did. All I know is that if he could understand why he is reacting as he is, he might be able to vent his frustrations in a more healthy way.

I know this is tremendously hard for you all the way around.

Also, what kind of tests did they do and how on earth was the cancer missed? What were your symptoms? I ask so that your answer might help someone else on the board as we have many people who come here with symptoms and who worry ab out their dx.

love and fortitude

elaine

[stand4hope]

Hi Melanie and WELCOME!

Your post made me feel so bad that you are having to live 24/7 with this difficult situation. My heart goes out to you. Like the others have said, I think about the only thing we can do is encourage you to seek counseling, and if he won't go to get some for yourself to help you deal with his anger.

You don't give us much detail on your treatments and where "everywhere" is with the cancer. I have said that my husband has cancer "everywhere", but of course he doesn't, but he does have it significantly spread throughout his body.

He is also Stage IV with numerous brain mets, numerous bone mets, met to his liver, pericardial effusion and pleural effusion. The good news is that he is 15 mos. post-diagnosis, still has 4 brain mets, still has all the cancer I described above, but he is doing great. He, too, when through at least 6 mos. of misery with treatment.

Today, he is working full time (10 hr. days), still taking care of house and yard, washes his truck in 35-40 degree temperatures if he thinks it needs it, rides a huge motorcycle, works on multi-million dollar high-tech, computerized, electronic machinery, drives every day, buys me dinner, and cooks me dinner. This week he has replaced an outdoor security light, replaced a defective lamp switch, washed, folded and ironed his own laundry and wrestled with our dogs.

THERE IS HOPE!!!!

God bless you, Melanie,

Peggy

[cindi o'h]

Melanie,

I am so glad that you posted!

I am so sorry that you were not listened to and that your cancer is in advanced stages. I am maddernhell about that one!!

I am also maddernhell that your husband is toxic. He is poison! I have been there. Not with a husband but instead with my grown up litter mates. My sibs. How they have responded to my cancer is unblankingbelievable. It just does not make any sense to me at all.

With the help and support of friends and a lot of talking to, my pals made me know that for the sake of my survival, I needed to cut the strings that didn't bind us and let them go into the toxic bin. There was no way that I could change them. The poison is too deep. The most important thing is that I come out of this deal intact. I asked for emotional support from my family and they laughed at me. They don't think that I am or was sick. It is the craziest thing. I cannot make any sense of it.

If you are in a position to get some counseling and you see improvement and you are getting your needs met, then stay. But, if you are not then my advice, (and I may be wrong based on past experiences I probably am) is to get out of there and save yourself. You need and deserve all the support you can muster right now.

Pm me if you need to talk.

Cindi o'h

[ellakc2]

Melanie I'm so glad you posted. You need to vent also and this is the

place. Everyone here is so understanding. Try to get outside counseling, but if you can't we'll all listen and try our best to help. God speed. Take

care!

[Katester]

Hi Melainie,

I too am glad that you posted. Come as often as you need to for support and comfot.

I can't answer for your husband of course but on the surgical floor I was on in the hospital were 5 lung cancer patients that I knew about and myself and then others who had heart surgery and other types of surgery that I didn't really know about. One of the things I did notice right away is how distant some of the husbands were acting towards their wives.

I heard one man tell his wife who was complaining about the pain she was having trying to walk for the first time and he told her to "suck it up and keep going". Later that night all the nurses were talking about this and they said that many times the husbands are angry because they don't have control of the situation set before them and there is nothing they can do and are frustrated. But, they also said they have seen this with wives with ill husbands too. My husband told me to keep going but it would have been his last three words if he also added "suck it up".

Maybe you could just talk this through with your husband and let him know how he is making you feel rather than just holding it all inside.

I am sure it is not his intent to hurt you in any way . Everyone needs to be encouraged and praised and feel loved no matter what the status of our health is.

I wish you all the best.

Kate

[Justakid]

Melanie-

So glad that you found the site and so sorry that it took an unbelievable 4 years to get a dx! That is unbelievable!

Hang in there, my thought are with you!

[ken f.]

hi,

yours is a heartrending post and i reflect with some dismay into your situation.

then it occurs to me that all through our lives and into our deaths we are examples to others we encounter of how to live, and of how to die. you are teaching your lesson now for the benefit of others. they will remember.

i hope you can find the focus to look at an be with right now. it is all there really is and all we really have.

best of luck and i'm sending you light and clear vibrations.

yours, ken

[paddy]

Dear Melanie,

So very sorry that you find yourself in this position. You sound like a very brave lady.

As far as your husband is concerned I think that often men are so used to being in control and "fixing things", that when faced with something they can't control they "loose it". Your husband is probably scared out of his mind too. I know I felt like that all the time, you feel so totally helpless and yes, angry with life, although I tried not to show it. Have patience with him he is only reacting like this because he loves you and doesn't want to lose you. I think if you could get him to counciling as the others suggested it would be a good thing.

Lots of love and prayers coming your way,

Paddy

[Don M]

Melanie: there is a lot of good advice here; Yeah if you can get some counseling, you and your husband together, it will help to get over the first emotional hurdles so you can talk about it. I am sorry you have to deal with all this, but remember that there is hope. I see a lot of stage 4 survivors posting here and other sites who have been around for years.

[MelanieLR]

Wow, I've had so many responses to my posting! I want you all to know how much it means to me to have your support & to know that so many people care. Believe it or not, we've both had counseling. I believe that it's true that the husband feels that he should be able to control all that goes on in his domain regardless of the advances we've made in the equal rights arena. Prior to my disability, I was the major bread winner in the family - actually, I still am between the company disability & SSD, & that has always been a bee in his bonnet. Anyway, one of the responses to my initial posting requested that I share more of my experience in my 4 year journey attempting to get a diagnosis. I'm not really sure it will help anyone because I did everything right. When I didn't feel well, I went to the doctor. When I found a lump I went to the doctor. My primary care physician sent me to all the appropriate specialists & for all the appropriate tests. In the end, they simply missed it for 4 years & now I find myself with stage 4 cancer. I will go into more detail in another forum at a later time. I seem to be running out of gas right now.

Thanks to all of you for your helpful comments.

[kimblanchard]

Melanie, I read your "My Story" so I wanted to come over here and just say Hi. I am so sorry this is happening to you. I can't fix it. I can just say Hi and you are among friends. For me, this board has made a huge difference in the quality of MY life as a caregiver and helped me to help my husband. Welcome Melanie. Thank you for sharing. Margaret

[Ry]

Melanie,

I am sorry about your situation. I am really at a loss for advice here. I know that for some couples the cancer brings them closer together and for others it seems to just tear them apart. Sadly, you aren't alone here in this. I can't tell you how many other members both men and women have been treated badly. It breaks my heart to hear the things people do to each other.

I hope you will keep us updated on how you are doing. I wish you all the best and some good days ahead.

Rochelle

[appleton]

Melanie,

Gosh, you have been through so much. I am wishing for the best for you and your husband. Please do keep us posted.

Karen

[Elaine]

Melanie,

Thanks for posting your story on the "My Story" forum. It really angered me to read about what you have been through.

I do have a couple of questions.

First, what is the reason you ha ve been given that it was not found sooner?

Does your lung tumor show up on CT scans? What ab out the tracheal tumor?

Also, you said you had CT scans. When was the last chest CT scan before the one that showed you had lung cancer?

One reason I ask is that I am trying to find out the false negative rates of chest CT scans and what makes them miss things... I am writing an article, and not just being nosy.

Thanks.

elaine

[J.C.]

Hello Melanie,

Welcome on the forum,

Sorry for the long road you had already to find what was

wrong.

Just hoping that from now the road will be smooth for you.

J.C.

[richinsdakota]

Welcome; also dont forget the American Cancer Society , or even the Lung association....I think they can help you get the help you need, be it counseling, info, ...whatever your situation is. Ok..good luck...Rich B.

[lilgna]

Melanie, I also have read your posts, and it is so hard to read, so I am sure its so hard to live..... I am at a lose for words, I am so very sorry, the system failed you so many times, seems unreal, and now with Dx, life is so hard emotionally. I will certainly pray for you. That said, I do want to encourage you to try the treatments and see where it gets you. Please do not dwell long on the original prognosis, they are all just stats, no one is a stat. Everyone will respond diffrently. there is HOPE, please consider treatment. And give your husband time, perhaps, things will improve...I pray they do... but if not, you must focus on yourself. I will be looking for future updates. I will think of you often.. Be well.

[Nitescan]

Melanie

So very sorry to hear of your dx being as long as it was. I'm totally at a loss for words here, also angry, downright p-o'd about the system failing you on your dx's. As with my wife, I just wish I could take all this pain/suffering away from everybody. Remember there's only one being that can tell/show you how long you have to live. I hope your husband comes to grips with what he's doing to his loved one. I feel we become each others support center as we move into & thru treatment, each having a vital role in how we progress. With that being said I hope your husband seeks some counseling for helping you deal with cancer, it isn't your fault, you didn't ask to be strick'n with it, you didn't sign up for it, you certainly didn't want it! My heart goes out to you & I hope your husband gets his head screwed on straight soon! I hope maybe he will read some of the boards on this site!

Keep on go'n Melanie, my thoughts & prayers are for you!

Marc

[shineladysue]

Melanie,

I just want you to know that you can always find support, a hug and people to care here. God Bless you.

sue