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heyjudefl1

re:New and Not Doing Well

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I have just joined this message board. My husband was diagnosed with NSCLC in Aug. 05. We are both so devestated and really have lost hope. The doctors have been negative (just a little bit of positive would have helped). Sometimes I feel very alone but I have been reading messages on this site and realize that there are so many others in this horrible situation. We went from a wonderful life to a very unhappy life. I cry all the time and feel so depressed. I so wish for our life back instead of this nightmare of appointments, hospital stays, etc. Sorry to be so down but I keep asking myself where this "quality of life" is. Everyone says to take each day one day at a time. Easy to say but not very meaningful when we face this every day.

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Welcome Judy!

There are many of us here to help you through this very difficult time. However, we need to know a little about your husband's dx and tx plan. If you notice under our names........we have sort of outlined everything. That will certainly help us help you. Many of us feel as you do, you aren't alone there! Let us know more and many will be around to offer support.

Kasey

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Thanks for answering.

Husband DX with NSCLC Aug. 2005.

Started Trial with Tarceva Sep. 2005

Hospitalized Oct. 2005 for Fluid Around Heart-Drained

Back on Tarceva after hospital/New Scan Showed some Enlargment of Tumors-No Longer qualified for Trial.

Nov. 2005 started Tarceva (not on trial) with Alimta.

December 2005-seemed disoriented-Mri of Brain showed spread to brain.

Dec. 05-Jan. 06-Had 11 WBR treatments

Jan. 06-Went to Sloan Kettering for 2nd Opinion

Feb. 06-Mri of Brain showed tumors shrunk/Pet Scan of Chest showed some enlargment of lung tumors

Mar. 06-Trouble breathing-Went to emergency/put on ventilator/dx pneumonia because of aspiration/nothing to do with lung cancer. After 6 days in hospital was a little better and breathing ok. Chemo stopped.

April 06-Gamma Knife for last tumor in brain. Very successful. Brain cancer should not be a problem.

April 06-Oncologist told my husband that it was up to him if he wanted to do more chemo. He is scheduled to try Avastin Mon. April 25.

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Hi Judy,

Welcome. I know how hard this must be for both of you. I've been on Avastin since May, 2005. It's worked well for me and has kept me stable. Also, no side effects (yea!). Doctors, from what I've seen, aren't usually the most optomistic bunch, but you really need to remember that they don't know everything, especially when it comes to LC, unfortunately.

What we need to do is keep on going, until they find the next wonder drug, or hopefully cure. Eventually that will happen and we just need to be here when it does.

I wish you both well.

Joan

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Welcome and glad you joined us. My wife and I know exactly how you feel. Your not alone. We both cried are eyes out in the beginning and then we said that's it, now is the time to fight. We are both trying to keep a positive attitude. If your doctors are not being encouraging, maybe you can find one that will give you hope. Main thing I can say now is please stay positive and keep those spirits up. Feel free to ask all the question you want, someone here will be able to help. God Bless.

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We have a saying on the board (Don Wood's I believe) "the new normal." Life has changed for all of us but we can adjust and adapt and find good days. Avastin is getting lots of good press-- think positive-- it's so important. Welcome to the family.

Rochelle

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I see you are in West Palm. Thats Where I met my wife and lived for 4 years while at Florida Culinary on 45th street. Lived In Lantana across from Airport LITTLE AIRPORT!! Where are you going for treatments? If you do not Like your Oncs attitude change docs. Lots of Facilities. Can send Recs if you would like but let me know where you are treated right now. If your Onc will not be supportive of this fight find one that will. What kind OF LC does Husband have? If it is Adenocarcinoma there should be about 6 posiible regiments of Chemo for him deepending On Mets. Will do a little digging and see what I can find for ya! Saying prayers. Oh yeah bout the sadness; think positive, you have found some of the finest people in the world to help you trought this battle. First you need to read the good news and Survivor column. Remember remember yesterday, Cherish tday and Pray for tomorrow. Put your gloves on this is a fight to beat this monster we call Lung Cancer.

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welcome to the boards! I am terribly sorry you find yourself in need of a place like this. I am so sorry about your husband.

I have to admit that I unfortunately understand every word of what you are saying. It is normal to feel devastated. It is normal to cry and feel cheated. I feel cheated. Life is so unfair. You made so many plans with your husband, you love each other and want nothing more than to be together forever. Now something is threatening to not only steal those happy future plans from you but is also making today a nightmare as you watch your husband struggling. This is not what either of you planned and it is not what either of you deserve.

You are mourning the loss of your happy go lucky lifestyle and you are also experiencing anticipatory mourning for what you fear is ahead.

This is all ok. Cry, and get angry. Vent and let it all out. We are here for you and will try to support you.

Please don't give up hope. I think what people are trying to say about taking things one day at a time is not necessarily bad advice but it is a little simplistic. Try and find something in each day to be grateful for and to hold onto as a warm loving memory. Whether it is a shared smile, or the feel of his hand in yours. He is here with you right now, and you need to cherish each moment with him right now. None of us are guaranteed a tomorrow. If your husband does pass from this you will have no regrets and warm moments to remember. If he does surpass all odds and beat this, then you haven't wasted this time in misery. But have hope. There are many on this site who are defying the odds and surviving. My husband too has surprised doctors. They originally gave him about 9 months to live. That was over 3 years ago. And we are not done fighting yet. Doctors don't know dates, and only can give you statistics based on old data and generic generalities. Your husband isn't a number and is not a statistic. He can be a miracle.

I'm sorry I rambled on, I just really felt like I could touch your pain, and I can so relate to what you are feeling.

I will be praying for you and your sweet husband

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Welcome! Yes, the past is gone, and we have to live with the new norm, what now exists. We think positive and live with what today brings. If we dwell on what was, we will be miserable and negative. If we seek what we can do to move on, we will be happier and positive. It takes positive attitude to fight the beast. My wife and I have been fighting it for 3 1/2 years and she is till here -- not living the life of yesteryear, but the life we now have -- and it is very rich indeed. Let us know how we may help you along the way. And keep us posted on your husband's progress. Don

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No hope?? I hope you went for a 2nd opinion. He was just dianoised in Aug. and they say no hope.

Tell us about your husbands staging etc.

I am sorry you had to find us. But I feel there is always some kind of hope. Please let us know about his case.

Hang in there.

Maryanne

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Welcome to our support family.There are many here that know and care a lot and can help you through this.

As stated above this disease does seem to require getting used to a new normal.Easier said than done but can be accomplished.I cope by making positives out of negatives and by enjoying and making the most of each and every day.Albeit some days are worse than others,they still all have something special to offer.

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Welcome Judy:

So many others have already given you a great start that I am not sure I have much to add. I am just coming into understanding that "new normal" may also include redefining what a good "quality of life" is -- We all get depressed and angry that things aren't the way we planned, but with this we have the opportunity to deepen our relationships with our loved ones at a new level; and perhaps polish our own views on life about what's really important that we took for granted before.

You'll find a great group of people here who will help you in this journey.

Hugs,

Linda

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Judy -

No hope? You should have lots of hope - he was diagnosed in August and seems to be doing well (right?) My mom was diagnosed in August 2005 and left this earth in January 2006. She was the picture of health -- never did anthing to harm her body, worked out every day, etc. This disease is terrible and randomly chooses people -- but it is part of life and you have to make a conscious decision to adjust and accept the diagnosis, not the statistics.

Yes, life changes -- but your husband is still with you, talking and sharing with you, LIVING. There is a new normal, but that doesn't mean that every day has to be depressing and sad. Of course you are sad and depressed at times...but please, please cherish what you have. have to say that anti-depressants have helped a lot of...better living through chemistry!

We are all here to help you. Everyone here gets discouraged, but there are many reasons to be hopeful!

Holly

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Welcome Judy,

I'm so sorry that you have to be here! Don't ever give up hope there are so many people who beat it.

I know sometimes it's hard to have hope but you and your Husband need to stay positive and never give up.

My thoughts will be with you and your Family!

Love,

Michele

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So sorry to know you are here under the same circumstances as the rest of us. I know in my bones exactly what you are feeling. It's been a little over a year and I still have many, many "weepy" days. Some days are hope filled and others are just plain scary and full of sorrow. Our social life is Doctor's visits, blood draws, etc. Sometimes it is hard to just appreciate a warm spring day. Then there are days that I depend on friends and family to pray for us because I can't seem to do it myself. Yeah, I know about the "one day at a time" saying -- but sometimes it comes down to one minute at a time. I want to tell you to "keep your chin up", but I know how hard that can be at times. I still rage about "wanting my life back" -- but it's true that you find a new pace. I know I sound a little bit gloomy, but know there are others in your situation. It's helped me to read about others fighting this dread disease and more than that it's inspirational to see the grace they show while doing it. It can and is being done. My husband is my greatest teacher about grace this past year. Look to the little things when you can. I know this message sounds jumbled, but that's just about how I feel these days. Hope it helps to know others feel the same.

Welthy

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I also welcome you to the family.

When you say its hard to find hope or be thankful or grateful, everyone here knows that feeling. Your feeling cheated unlucky, crapped on, sad, angry... all of those feelings are valid and you have a right to them. No one deserves cancer and especially lung cancer when the odds are already against the patient becuase the dollars are not there in research like in other cancers.

But think of it this way. You have so much to be thankful for already. Your husband is still HERE. As long as that is what it is then there is ALWAYS HOPE. Never give up the fight and if your doctors are not positive for you the dang it find another one and keep looking until you find him or her.

the squeaky wheel gets the oil remember.

also think of it this way. You have chances now to make memories and tell each other how much you love each other. There are people today who went to work and wont ever come home from some accident or something.

Live like gangbusters right now. If you knew the world were going to end in three days wouldn't you want to go out in a blaze of glory? I am not saying your husband is going to pass anytime in the near future, just that you were given this alert that everyone's time is fleeting. You started dying the second you were born. Live like today is it, even for people who have not been dx's with anything yet. You yourself are not guaranteed to come home tomorrow so live the life you were given today.

if this is coming off bad truly its not how I mean it.

I have just lost so much and have lived in fear of cancer for so long that I am trying very hard to "Carpe Deim" myself. I want to go to my grave, dirty, tired, broken, scratched and limping. If and when I go, I am going fighting.

shelly

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When I go I want to be buried face down so every body who doesn't like me can kiss my maximus glutemous!!! Live each day to the fullest ana always say I love you every chance you get. Hope youare doing well.

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I would just like to add my welcome to you. It is true that some people die rather quickly from this disease, but many others survive and enjoy their lives for years. There are 10 years+ survivors here who have no evidence of disease and started out at a rather gloomy place. So, there is hope...there is hope. Let it be your mantra.

There are some side benfits to having lc too. For instance, I no longer sweat the little things. I used to get all upset when I stepped on dog s--t, but no more. Now I just smile.

If the doctors seem pessimistic, your husband should get a second opinion at a major cancer center.

Don M

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Oh, please don't give up hope. There are so many people who are out there and praying. Life is a journey and a most difficult one. Stick with this board, as there are so many great things to hear, share, and learn from. I will say a prayer for you.

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I am overwhelmed at the response to my very depressing message to introduce myself to the message board. I was in tears just reading the kind thoughts that so many expressed. Truly, I do try to be positive and live each day to the fullest with my husband. It is just so hard to see him like this. We had a bad weekend because he had stopped taking steroids (dr. said cut down). After restarting the steroid on Sun. he was doing better. Yesterday he slept from 4A to 5 P. Just when I start to think he is doing better he seems to go down again. He was supposed to start a new chemo yesterday (Avastin) but Sun. night he said he just did not feel up to it and needed some time to recoup. As much as I wanted to see him doing some treatment, I understood his need for some time. I go up and down based on how he is. If he is ok I am ok. He has a hard time getting up from chairs, etc. as his muscle mass has shrunk (from Steroids??) I could go on and on but I am sure you have all been there, done that in one way or another. Please know that I so appreciate your thinking of us and it does help to be able to express my thoughts-good or bad, something I am not able to do very often with anyone. Judy

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Hi Judy, I caught the end of the postings, but wanted to add that there is much to be said for the power of prayer. There are so many things in this life that even the worlds greatest minds (this includes our docs!) don't understand.

Right now, you and family are grieving the loss of your old safe world, which is gone forever. We hired a grief counselor those first few months to help us put our new life in perspective.

I hope you remember... with God there is always hope, Barb

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Hi Judy and welcome. It always makes me smile when I read that someone is overwhelmed by the love, support and encouragement that can be found here. I know the feeling well and I see that exact word written time and time again from those who first experience it here. I am so sorry that you are having to face this disease and are struggling to come to terms with this *new normal* that others have mentioned. My father was diagnosed with stage 4 lung cancer just a few days before Christmas, 2005. My mother had died just a little over a year previous to that and so my husband and I are my dad's only caregivers. In the ensuing months I have alternately felt great dread, fear, and despair but I have also, surprisingly enough, felt incredible joy and my heart has been lifted by the smallest of things and in the most surprising of ways. My Dad had a real bad day yesterday, probably one of his worst, but today he's better and my heart soars. I'm happy and all is good with the world, right now, today, this minute. I know now that prior to the new normal, I let slip by other times in my 45 years that could have filled my heart as well, had I only been looking and open to the joy of the moment. There isn't anyone alive that can predict when or how any of us will leave this earth so please, discard the Doctor's negativity and find what's positive and hopeful from within yourself. One step at a time, one day at a time, it really does help and it'll keep you sane :) Wishing you peace for your soul and comfort for your heart.

Lynda

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