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Newly diagnosed stage IV mets


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My name is Jeanne from Burke, VA. After having severe back/shoulder pain in early Dec,2003 on Dec 29 a chestx-ray showed left lung tumor with right rib metastisis and spot in liver. Confirmed ct,bone scan and broncoscopy for Stage IV. Rushed to Rad and chemo w/ carbo-taxol and just had my ct redone after 2nd chemo. Will get my results on Tues.

I haven't gotten a second opinion because I feel very comfortable with drs so far. I just can't get comforable with myself or my emotions. I am

48 and feel helpless to answer my 4 children questions, fears, tears and anxiety when I can't even address my own.

I still feel numb most of the time and just follow where ever I am lead because I am so terrified that something will happen to me. I know I need to get out of this mode, I just don't know how or where to begin.

I pray to God to help me each day and somehow wind up taking over again by becoming like a turtle withdrwn in its shell. If I allow myself to feel too much I will loose all control and it will consume me. I fear the night that something will happen, fear being alone yet I'm isolated because I can't drive due to the back problems and pain meds to be able to gewt out and feel like I am still living life. My husband tries so very hard to do everything, my sister too, but she has a life to live as well as her mother-in-law (alzheimer) with her. I feel like I am overwhelming her though she never complains.

I just don't know what to do with all this stuff and I really need to hear from someone who has been there who might be able to help me know its really okay to feel any thing any time but how to deal with it in a constructive fight for myself.

If anyone can give me some insight I'd appreciate it.

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Sorry you have gotten this awful disease. My wife's case has similarities to yours (see below bio). First, feel free to express yourself here often. We are all here to support and exchange info. We are all on this walk together. I recommend that you seek someone out where you are that you feel you can trust and express yourself to on a regular basis. You will need to do this for yourself. Secondly, you need an advocate --whether your husband or sister or someone else -- who will fight for you through the system. You will often be too sick, too tired, too medicated to do the best for yourself, so you need another pair of ears and mouth. And let them do that for you. There is hope here, so hang on to that. You have friends here. Don

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Jeanne,

I am touched by your post and am glad that you have introduced yourself. I know that you will find love and support on this site. If you haven't looked at this site, go there when you are able

http://www.blochcancer.org/ I found it very helpful.

I was 60 when I was diagnosed and so you are younger and have considerations (children at home) that weren't part of my struggle. Please know that you are in a very emotional stage of this whole thing. It is so, so difficult when you are going through learning the language and dealing with having to tell people where you are with this disease. It all feels overwhelming...well, truthfully, it is overwhelming. But as you go along, you will realize that you still have control. You, with your family, can still make the decisions.

Please express any emotions you wish. We have been there and, most importantly, understand. You will find information abounds on this site and support is non-ending.

Blessings to you,

Margaret

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Jeanne,

You've allready made the first step in getting out of that "mode" by joining us here. You've already met one person (Don's wife, Lucie) who is in a similar situation and is SURVIVING! And you'll meet many more here.

One thing my wife has taught me since I was diagnosed is to allow her to love me. She WANT'S to help. It makes her feel good when she's able to help. And if I were to turn the situation around in my head I'd be the same. So let those who love you show that love and don't feel so guilty about needing their help.

This can be a scary, nasty illness. But it CAN be delt with. There are tons of folks right here who are doing that every day.

Yes, there are tears, and pain. But there is laughter and joy, also. And, when you think about it, isn't that what LIFE is all about anyway?

I'm praying you'll be around here a LONG time and looking forward to hearing some really good news from you as you walk this rather bumpy path with us.

Dean

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I'm a little younger than you and we have the same dx. If you want to talk, pls just pm me and we I can call you or we can write. I am newly dxed also. Also in a daze and would like to help if I can, at least by listening and being there for you.

Elaine

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Hi, I am 49 with a daughter about to graduate from high school with honors. So I can relate to the fact that she has so many special activities coming up in the next few months and I am sweating bullets hoping I will be healthy enough not to ruin this important time of her life. I have apparently 12 tumors in my lungs and have been fighting this disease for over two years. I live a perfectly normal life, and have been lucky not to be effected by the disease or treatment so far. I work every day, walk, do my own yard work and housekeeping, etc. I eat non-stop all day to keep up my weight and energy. I excercise a lot. I just had another CT scan on Friday and start carbo/taxol tomorrow. So I am a little stressed out now too. This board helps so that you can see what other people have experienced. I get lots of advice and that can be overwhelming. I tell people I can only deal with things one thing at a time. With the info on this board you can read the info and take what you thinks suits you. It definitely helps to be able to talk the lingo with the doctors. You can like your doctors but you need to be well informed too because they are not always right and rely sometimes too much on statistics. I also have found that my experimental doc does not think like my traditional doc. The surgeons don't think like the oncologists, etc. Good luck. It is doable just scary as hell.

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Dear Jeanne,

Welcome to this little family. I am so sorry you have had to join this board, however, I must tell you that there are some very strong minded people here who are battling the disease so courageously. They have been an inspiration to me and I am sure they will help you fight the fight.

God Bless you,

Paddy

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Hi,

When I was first dxd I was 44 years old, my youngest was 16, my middle child was scheduled to graduate from high school in 8 days, and my eldest had recently joined the military and was about to be sent to one of the world's hot spots. I can relate to what you have written on several levels.

Jeanne, it takes time to adjust to all of this. It's been only a few months since your diagnosis. You are doing very well for someone who is only a few months out from a diagnosis of Lung Cancer.

This is a good place to be to learn what you need to know to battle this beast. And you have a lot of good people cheering you along.

Best Wishes

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One thing besides the love I feel on this board is that so often someone's response to someone else is JUST what I needed to hear. I keep telling myself I am down too much, but when I look back over the last 5 weeks, I realize I am in much better shape than I was. I am stronger, and need to give myself some credit for that (and this board). So anyway, guest. Fay is right, you are still so very new to all of this and if really knocks one for a loop. So I agree, look at your successes. you may feel like you are only being lead around. But darn, it's your legs doing the walking.

My best to you.

Elaine

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Hi Jeanne,

My name is Dee and live in Chester, Va., I'm not sure where Burke is. I am 45 now was diagnosed with non-small cell lung cancer stage 111B, just a few days before my 43rd birthday. I am a mother of three, only one is still at home, she's 17 now. My other two daughters are 28, and 22. I have 5 grandsons, yes, 5 grandsons. One of them is like a son to me, as he lived with me for several years. My thoughts when I was told about this disease was thoughts about him, he was two at the time. I know its hard, I just kept telling myself I was going to be ok. I wish you the best of luck and will say a prayer for you. I have finished my chemo and radiation. I feel pretty good now.

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Hi, Jeanne. I can see your distress and would like to copy/edit a post I made to a daughter of a patient a while ago (I sure hope you don't mind, Angie). I hope that the words can help you.

Becky

Okay, TIME OUT! Find someplace quiet, someplace away from everyone else, someplace "comfortable" and face the monster head on. DO NOT RUN FROM IT, it will NOT go away. Take several deep breaths and take a look inside yourself. Find where your strength is and draw from it... Remember how horrible this day seems to you so you can put the rest of the days in perspective as the horror and shock wear off a bit (they will, you will have other days of horror and shock, probably, but nothing like the initial...)

...now, as for dealing with the news... Let me tell you from experience, hearing the news that YOU are the one with cancer, NOT someone on the news, NOT someone down the hall at work, NOT someone in the carpool, NOT a neighbor, but YOU is something that will knock you on your *ss mentally. It's inconceivable - and it's true. VERY hard to deal with....and then, there's the realization that it has NOT won yet and that you are going to fight it with everything that you have and even if it DOES win, it will NOT be an easy conquer, the monster will have to fight all the way to beat you down. I experienced some of the worst time in my life mentally, physically, and emotionally through this disease - the surgery HURTS - a lot, emotionally it all takes a toll - mortality is something huge to face, and mentally? Well, that's the BIG battle. Knowing statistics and spitting in their face, living with doubt, knowing that even though there may be no sign of it now, it can come back at any time and turn your world upside down... But da_ _! When you make it through ALL THAT, and win some of those mental battles, overcome the pain and all the other crap, BOY, does that feel GOOD! ...and then, although you may not want to engage the enemy again, you're up for another battle...

Here's some perspective for you - you're not dead! You have cancer, but you're not dead! You still have time to spend with the family, it wasn't a coroner calling them that that "random beer truck" won the game of Chicken. Make every moment count and remember how dear life is. Some day, you WILL die, you have been reminded that no one lives forever and given a chance to make it ALL count - take that opportunity and make sure that you LIVE in the time that you have left (months, years, decades, NO ONE knows for sure!).

Hang on, it's a wild ride. Keep your hands inside the car and make sure the bar is across your lap, it'll try like hell to buck you. We'll all be here when you need someone to hold you in...

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Jeanne,

This I think is the worst time, the begining. I'll tell you how I handled it and still continue to. You will cry you will hurt you will be depressed. You have to take all that negative energy and apply it to good energy. You will have some downs so low that down begins to look up. So remember to look up. When the chemo wears you down you know it will wear off and you will feel better. When they gave me the chemo and radiation my mind set was to relax completely and allow the drugs or the radiation do its work. If you're are too tense it is like you are blocking its ability to kill the cancer cells. I even developed images of the chemo killing and dragging the cells out of my body. Usually the diahrea from the chemo will flush you out. Find a positive way to look at diarhea. Let yourself lean on your husband for support. Rochelle, my wife has been my guardian angel. My whole family has been the best thing for me. Keep applying a postive attitude. Trust your Drs but do not be afraid of questions or hurting thier feelings by asking for a second opion.

Take care John M.

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Dear Jeanne,

I am not that far from Burke, just over the Md. state line.

Please pm me if you want to talk more or email about this.

Courage is not the lack of fear, but acting in spite of the fear. I too felt the nightmare that got worse when I woke up. I realized I had a choice. I could hide under the bed (metaphorically) where each second became 500 years long, or I could get up and face the monster.

I got up. I faced the monster. It was not easy. I was terrified. I had no husband or extended family close by. I did have a friend who went far out of her way to be my advocate, and I truly will be grateful to her as long as I live. It was still the roller coaster from he!!, and much of it went right by me because I was numb.

Being diagnosed with cancer was one of the most isolating things that ever happened to me. It does set you apart, forever, for better or worse. Life, especially your perception of life, will never be the same.

Take a deep breath, and be gentle with yourself. You have had a terrific shock to the system. This is not going to go away, or get better fast.

Understand your diagnosis, and your treatment. Ask questions, and participate fully in your treatment with the rest of your treatment team.

Believe in your treatment. Successes happen every day, and there is no reason you should not be one of them.

Turn to us here for support, as we will in turn turn to you for support. I see that as one of the responsibilities of surviving, is to provide a shoulder and an ear for fellow cancerites.

Know that from the time of diagnosis you are considered a survivor. Not a victim. Occasionally a patient. Always a survivor.

Find the small blessings in each and every day. Taken together, they add up powerfully to heal your spirit.

Believe, and have faith, in whatever you believe in, be it God, medicine, a greater power, yourself, for faith will sustain you through this fight.

And know that while you have cancer, cancer is not the focus of your life. Live your life with cancer, don't let cancer become your life.

And remember, we all do the best we can. We get discouraged sometimes, we get depressed sometimes. We are only human.

But thankfully, we have this board, and the prayers of others who understand what this is about. This board is also a source of support and advice, and a lifeline to friendship when you feel most alone in the world.

Jeanne, know that you are cared about and that you are in my prayers.

XOXOXOX

MaryAnn

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Jeanne, you have really gotten so very good advise for the experts here on this board.

I was a caregiver to my husband for seventeen months. I can tell you that during those months we did not dwell on what might happen. We lived those months day by day enjoying the ones we could.

I can not by any means know how you or anyone on this board who is a cancer survivor feels but I can tell you that I will pray for you to have some piece of mind and hope that it works. Once you find that you can fight this devil, you will hopefully find the piece and go on from there. One must fight this with every ounce of energy they have for it is beatable.

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