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Roller Coaster is Right!


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I've been reading the posts here for a while and roller coaster is right when it comes to describing the overwhelming emotions that come with this disease. My mother was diagnosed with NSCLC, Stage IV, about 10 days ago. It has mets to her adrenal gland, hip (but not in the bone), brain (1 and 2.5 cm tumors on each front temporal lobe), and lymph system. The good news is that it is not in her bones and is only in her left lung (not both lungs).

I am at a complete loss as to what, if anything to do. I am her only child and she and my father live in Omaha. I live in Las Vegas. I went there for the diagnosis, but she, my dad, and the doctor told me to go home. She started chemo last Monday, radiation Tuesday. They do radiation (brain) for 2 more weeks, then a cat scan. Chemo once every 3 weeks, 3 times. She is refusing to eat, wants no contact with me, does not want to discuss her illness, and told me (when I was in Omaha) to not bother to come back until the funeral. The night before I left to come home to Las Vegas, she asked me if she was terminal (the doctor told her with me present that the best they could probably hope for was to make her comfortable). It ripped my heart out. The worst part of this disease is that everything that happens you think, "this is the worst part," and then something else happens, and it's worse!

I would appreciate any information from caregivers or survivors as to what to do. Should I do as she asks and just back off and leave her (and my dad) alone? She appears to be in denial and angry at the same time (I know that's normal), but she keeps giving up on trying and refuses to educate herself (she's very bright, she's not a stupid person!) about the disease or to do anything proactive regarding her care. It's making me crazy, especially with the distance involved.

Thanks for any advice.

Terre

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Hi Terre,

There are alot of emotions involved when receiving a difficult diagnosis, and your mother will go through stages of grief until she comes to acceptance. She was just diagnosed 10 days ago so it is all new and I am sure she is going through alot. When my husband was diagnosed last month, he didn't want anyone to know. Now he has told his family and all of his close friends. Everyone copes in their own way. Allow your mother some time to sort out her emotions. She will need you during this difficult time. I will keep you in my thoughts and prayers.

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Terre,

I know what you are feeling. We were in that same spot 10 months ago and we were told that this was terminal and that dad "maybe would make it to christmas..." That would have been 4 months after his dx. and now look, we are here 10 months later. There's no ryme or reason to the statistics and the doctors (unfortunately) go by them, but as you read thru theses postings and profiles, NO ONE here falls into those statistics.

There are several treatment options for your mom that could very well extend her life until the next treatment option comes along or even put her into complete remission! That's the way I look at things now as in the beginning, searching the internet and obtaining information only depressed me and gave me no hope. THIS message board gave me hope and the strength to fight for my dad.

As far as you living so far away, it is still early yet and there is still some time for you to think about the decision on whether or not to be closer to your parents. Is there anyone else who lives by here who can be a strong advocate for her and keep close tabs on the doctors and staff and her medical care?

My dad is a smart man too. But in the beginning, with the shock of the dx., the anger, the physical pain and weakness, he virtually did nothing except go thru the motions of what he was told. He didn't care to hear anything, he told us he was "dying" and "what is the point" I rallied very hard to get him in a "positive" mode, to lay it all out and tell him why he needed treatments, what NOT having treatments would mean , and that he needed to be a part of this fight. Let ME research, organize, make appointments, stay on top of his doctors and tests, and let HIM have some peace of mind and his body go thru what it had to -to be able to come out of this "on the other side".

He is thanksful for my help now, as he says he doesn't even remember at all anything that had happened or was said the first 4-5 months of this disease. The pain meds, the first experiences of chemo really wiped him out. He just remembers it being "awful"

There are alot of folks here who live far away from their loved ones and they advocate thru e-mail and telelphone with their loved-ones doctors! Maybe if you cannot be there, then you can do this. Make lists, ask questions, obtain copies of medical records and tests. (you will need your mom to sign a release to allow you to have access to her info)

Tell your mom how much you love her and being her advocate would really make you feel like you were helping and doing somthing in this fight against cancer. That she may become disoriented from her medication, and information overload - emotional stress - etc...are all reasons why she needs an avocated to look out for her best intersts.

Anyway, sorry for the long post, I hope this helps. Your mom will be in our prayers! AND you too! Welcome to the message board!

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For your replies. It helps to know that this is "normal" (if one can call any of this normal). To see someone bright, vibrant, energetic, a true fighter... just give up... is too wierd for words (as I'm sure you know), and it helps to know that this is to be expected.

Right now, I'm waiting for a phone call from the hopsital. My dad took my mother to the hospital this morning. Luckily, we have a good family friend who's daughter survived lymphyoma. The friend has been incredible. My dad didn't call me; he called her (which is fine) and she called me. She was on her way to the hopsital and promised to update me.

You are all in my thoughts and prayers.

Thank you again.

Terre

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Terre, hearing the word "cancer" has a numbing effect. And with the pain and all, your mom is scared, angry and depressed. So take what she says with a grain of salt. As people have said here, she will come out of this -- it just takes time. I am glad you have a friend you can get the news from. Your dad has his hands full, too -- take it from a caregiver. When things start to slow down, perhaps he can communicate with you directly. I suspect he knew the friend would inform you and he didn't have to give you the news himself. Both your parents are going to go through a rough ride, so hand in there. Blessings. Don

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Terre,

Welcome to the board. I'm sorry to have to meet this way. You and your mother are in all of our prayers now. There are many wonderful people on this board with successful survivor stories. Be sure to read them and perhaps you can share them with your mother at some point.

Blessings to you,

Peg

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Hi Terri,

So sorry to hear about your mom. your mom's condition sounds exactly like my husband's except his is also in the bone. He will do whatever the drs advise but he still says he is going to die with this condition. He has every reason to feel this way because of all the lung cancers we have been through with family and friends. After his oper to remove the left lung, the chemo and the radiaion drs both told him that they felt with todays meds that he might get one to two yrs if he does chemo and radiation. He really got sick, sick, sick. But now, he is like at a stand still, he is somewhat better from the down right downer he was in but still has very little energy. He is back to eating great and that has to be a plus for he didn't eat a thumbs nails worth for two months..

We have one child also and he is our son. He lives nearby and wanted to be with us at the drs appointments. I think he felt we were not able to handle all of it. I let him be there at first but then told him as your mom and dad are telling you that we are capable of looking out for our spouse and know that we love you all but we must do this ourselves. You need to go on as much as you can with your normal life each day. Visit when you can and phone as much as your mom can talk or feels like talking on the phone. They love you very much but they must do for themselves. It is so much easier on them that way. I think you know what i am trying to say. If you have a family, they want you to look after your family. If you do not, then they want you to continue working so they don't have to worry about you. that is what i am trying to say and they are to, your mom doesn't want to have to worry about you while she is going through this and your dad the same. They only have the energy to worry about your mom at the present time.. We parents are that way....we always worry about our children but right now, we don't want to, we only have the strength to worry about the sick one. I hope you understand what they are saying. It is not to cut you out but only to help them go through this with each other. God Bless

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Hi Terrrie,

I think I know what your mother is experiencing. I had quit smoking

14 years before they diagnosed my cancer. They saidI was Stage 11B

and had my entire right lung removed. No follow up necessary they said.

I could't believe after all those years of not smoking to get this. Then

3 months later in April, it spread to my lymph nodes and I was restaged

to 1V- Adenocarcinoma nsclc. At first I refused to take chemo, because

I didn't want to be sick for remaining time I had left. Well I started to

get sicker and chemo was my only solution for relief. It wasn't so

bad and I am still in remission and planning a trip in January and feel

good. Get your mom on this board and let her see how many of us

are still here to give advise. Acceptance is hard, but once you do,

then the inner strength takes over and you learn that those are only

satisics.

God Bless You and your family,

Marsha

____________________________________________________________

dx 12/01 Stage 11B adenocarcinoma nsclc. 1/02 right lung re moved.

4/02 spread to lymph nodes, restaged 1V. May 02 started 6 treatments

of taxol/carboplatin, ending 8/28/02- been in remission since and very

greatful for it. Age 61

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Thank you all so much. Your advice and info help more than you can imagine. Mom is in the hospital with atrial fibrulation; her heart was beating over 170 beats per minute but has been corrected with meds. They are giving her nutrition with IVs, which is good since she refuses to eat or drink anything. I can't thank you all enough. You all are also in my thoughts and prayers.

Terre

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