I'm so sad

[Jaime]

My mom was diagnosed with Stage IV Non Small Cell Adenocarcinoma last month at age 57. Up until this she was a very healthy, active, non-smoker, so this diagnosis hit our family like a ton of bricks. From what I've been reading it's not uncommon for someone to have this for a number years with no symtoms. She had a cough and went to the doctor who sent her for a chest x-ray. There was fluid on her lungs so the doctor told her she had pnemonia and gave her antibiotics. She went back for her follow up x-ray and the fluid was still there, so her doc sent her to a pulminologist who took one liter of fluid out with a needle. My dad took her to the emergency room the next morning which was a Saturday because she was in so much pain. The fluid was back again. They called her pulminologist who said he wanted to see her first thing Monday morning. When my mom went to see him Monday morning she was told the fluid had cancer in it and she needed to go straight to the hospital. She was admitted on 2/14/05 and didn't get out unitl 3/2/05. While she was in the hopital she went through so much, she had to have a chest tube to keep the fluid drained, numerous scans, an MRI and surgery. They discovered she had two blood clots. One in her lung and one in her left leg so they put her on heparin. They found the cancer had not metastisized to any other organ, but there was fluid surrounding her heart. She had surgery to drain the fluid from her heart and had a procedure done to keep the fluid from building on her lungs. During the surgery they also put her cath in for chemo. I'm not to great with spelling the procedures that she's been through so I apologize. After the surgery the surgeon came out and showed us a picture of her lungs. He said "I'm sure you all know her lungs are really bad, right?" We really didn't know how bad. There were bumps everywhere, we were all devastated. My mom didn't want to know anything. She is so scared and sad and we all can't beleive this is happening. She had her first round of chemo on 3/8/05 and while she was there her oncologist noticed her arm was red and swollen and sent her to the ER again where they found multiple clots in her arm and the clot in her left leg is worse. They admitted her again and changed her blood thinner. She got out of the hospital on 3/11/05 (my birthday) and I was happy for her. She hates being in the hospital. She is very weak and sick right now, which I'm sure is the side effects of the chemo. This is all so new to me. I love my mom so much and we are all struggling to make sense of this. My dad is with her day and night....he is her rock. I am starting to worry about him and I keep telling him he should talk to someone about how he is feeling but he just tells me he doesn't have time. My sister, my brother and myself are clueless on what we should do. We offer to come over and help him so he can take a break but he says she needs him there. My sister lives in Cincinnati and she wants to be here but my mom says she doesn't want her to come because she is too sick. My sister can't stop crying because she wants to see her but doesn't want to disrespect her wishes. Its all just so hard and we all have so many questions. I can't eat, sleep or think. My mom is constantly in my thoughts. I am so scared for her. Can anyone give us some advice??? Are there any survivors of this type of cancer in this late stage?

Thank you so much for reading!

[finster]

Jaime,

Welcome to the group! I'm sure you don't really want to be here just like the rest of us, but you will find lots of support here. You can read my profile to see about my mom. The answer to your question is that there are several long-time term survivors here. I'm sure you will hear from several of them. Take care and keep us posted. I'm hoping for the best for your mom and your family.

[Ry]

There are many stage 4 individuals here that are doing just fine. Hopefully your mom will soon be one of them.

I am not clear from your post if you live close to your parents. If you do, as the caregiver your dad could use some help. It's hard in the beginning during chemo to function and get things done. It would be greatly appreciated if you dropped dinner by, did laundry, etc. Don't ask, just do. Your mom needs to rest and not worry about the day to day stuff.

Good luck to you all.

Rochelle

[Justakid]

WOW. I was originally dx at Stage 3A with NO symptoms and then started this whirlwind. Just fell down the stairs and was checking for a broke rib and hell broke lose. I understand the carpet being pulled out from underneath you all at once.

After only 4 short months the cancer is back in both lungs, go figure. My advise......your Mom is still in shock over the whole thing. I believe that! It took awhile to set in, in fact I don't think I really believed it until treatment was over in Oct. Now it's back....and I'm honestly in denial again. It hasn't hit me yet, again.

Just do what you can for your Mom. If she like watching TV, movies, DVD's.....crank up the TV. Playing games, get the games out. Keep her mind going so she can't think about it.

I am so sorry that this has happened, good luck and keep us posted!

[Patkid]

What a loving caring daughter you are. I am sure that you are a comfort to your dad and mom.

Family is a wonderful gift during hard and scary times. We care and will add your family to our prayer concerns.

Brian and Pat O

[daggiesmom]

So sorry to hear about you're Mom's terrible ordeal. Cancer is hard on the whole family, not just the person with the disease. Talk some more with your sister and maybe she could plan a "surprise" visit, which at first your Mom might protest, but once she sees her, she'll cool down. Maybe make some easy meals for your Dad to have in the fridge. Please let us know how you're doing.

Joanie

[karen335]

Jamie,

There's a LOT of survivors and hope and prayers here on this board.

Have you gotten more than one opinion? I would talk to your mom and dad and suggest getting another opinion. The hardest part is staying calm, trust me. We on this board have all been through what you and your family are going through right now. You have come to the best

site on the Internet for answers. We have either gone through treat-

ment or are going through it. Read reply's and/or subject's on this website. I am sure you will find lot's of answers. Read the ARCHIVES too. This is NOT a death sentence and don't think it is, always be positive. Doctors usually are always negative. Don't listen to the stats either, they are OLD. Your family are in my prayers. Please keep us posted.

God Bless, prayers and gentle hugs,

Karen - So. California

[stand4hope]

Hi Jaime and WELCOME to LCSC, although I know you would much rather not be here.

Try to take some deep breaths, honey. The first few weeks of dealing with this disease are the worst, but trust me, things will settle down in a while. Your mom has had an extra double whammy with the blood clot problems, and I'm sure this has been really hard on you.

My husband is a Stage IV lc survivor and quite advanced at that. He has brain mets, bone mets, one liver met, and, like your mom, a large pericardial effusion (fluid around the heart), in addition to the lung cancer. But, guess what? He's doing great. Working full time and starting to plan a motorcycle trip for later this spring.

The first 4-6 mos. were really, really tough. He was so sick and so knocked on his butt, that I thought the treatments were going to kill him instead of the cancer. That's the way it usually goes. They have to get worse to get better.

I'll be praying that this is the way it will go for your mom. You are probably about the age of our son and I know how this has knocked you for a loop. Take deep breaths, and just take it one day at a time. Our son was a basket case for several months, but his dad told him he was going to be around to kick his butt for a long time, so stop the gloom and doom.

My best to you Jaime, and please, please stay close to us. You will learn so much that will give you encouragement.

Love,

Peggy

[Don Wood]

Hi, Jaime, and welcome. My wife is a 2 1/2 year survivor of NSCLc, Stage IV, and still going strong. So, take heart. Your mom has been through an awful lot, and it takes its toll on the whole family. I wish you all the best. Don

[MelanieLR]

Dear Jaime,

I just hate to welcome people to this site but even though it is not a place you really want to be, everyone here will be happy to be of any assistance that they possibly can. This is truly a terriffic group. In the beginning of my dx, I was so totally freaked I couldn't function. I really do quite well most of the time now. It really takes some getting used to.

Having been on the caregiver end as well, that was even harder for me to live with.

Most of the time right now, I have a lot of great days & I take them gratefully. That is one thing that's hard to get used to. The up & the down times. Feel free to vent or whatever you need to do to get you through this with your sanity here.

May God bless you & your Family.

Hugs & prayers,

Melanie

[Don M]

Welcome Jaime: I see you have already got some good advice and info here. I just want to reiterate a bit. There are many stage 4 survivors and your mom can be one of them. Also, I think it may be a good idea for you and or your sister to just show up and start doing stuff as others have suggested. I understand the shock and disbelif aspect of dealing with this disease. I found it helpful to just go through the motions, step by step, in getting my treatment, even admidst the shock and disbelief. Maybe you can turn you dad on to this site. You all have my best wishes.

[stephnewyork34]

HI Jamie,

So sorry to hear about your Mom. Try to stay positive, and she may also be dehydrated from the chemo. My Mom got really sick from it from dehydration and then the next round she went in a day early and got fluids injected into her and then she was fine after the chemo and she was taking high amounts.

Also can they operate?

Anyhow, we are here for you.

I suggested this to everyone, but if you can read "It's Not About the Bike" by Lance Armstrong, it is really an inspiring story and gave my Mom a lot of hope and courage and so I suggest it to people.

Please keep us updated.

Steph

[cindi o'h]

Hi Jaimie,

I am so glad that you posted. You gave us a whole lot of good information. I agree with Ry, to just show up. Don't ask, just do. Pretend it is your house and you are the parent and your parents are children and then with all of the love in your heart, look around to see what needs to be done. Vacuuming, toilets, grocery shopping, changing bedding? When one of my little girlfriends was sick, she went shopping for the prettiest softest nighties she could find, cuz she knew that all the friends and relatives would be coming to visit. She still wanted to look pretty and presentable.

You said other than this lc, your Mom is healthy. I find that so encouraging! To me, that will mean that she will be able to withstand the treatments a whole lot better. They are rough. There are so many new chemo drugs out there right now... you didn't mention radiation... ?

I have stage lllb NSCLC. Right next door to stage lV. I had lots of chemo and radiation and I am still kickin' 30 months later. There is not one shred of cancer disease in my body! (The treatment kicked my tushie, but that's a whole 'nother story)

There is hope out there for you and for your family. If someone were to hand me a death sentence, I would get another opinion or two. Well, that is my nature...I am a fighter. I am hoping that your Mom is too.

I hope to hear more from you. Any questions that may arise for you, I hope that you will feel free to post them. There are many here who have gone through the gamut of fears and sadness that you are having right now. You are not alone.

love, Cindi o'h

[janetg]

Hi Jaimie,

I'm so sorry to read of your mom's diagnosis. You'll find that there are many people here to offer support, advice and perhaps most important of all, good listening skills. It really helps to talk. The fact that your mom is in good health will really help her with the fight. Your dad will need help although he's trying to look after everything himself. I think that he will appreciate the support your family can give him during this difficult time. I tried for the first month to be the be all and end all for Ron, only to discover that it almost caused me to have a breakdown. Once I let his family (brother and sister) jump in I began to regain control. They wanted to help and be there for him and it made them feel good. I welcomed their offers to cook his favorite meals and to come and sit with him when I had to work. You may not want to feel like you're forcing yourself on your parents but you really will feel better about doing it. Your efforts will be welcomed by both your mom and dad, I believe.

There is hope. This site has been a godsend. I wish I would have found it last March when Ron was diagnosed. The first two months after diagnosis were hell. But things did begin to fall into place once we knew what we were dealing with. It's still no walk in the park but Ron's had a great year even with the horrible diagnosis he faced one year ago.

Try to keep positive. Your mom's outlook will take her a long way. The treatment advances have been wonderful and will continue to get better.

Prayers are coming for you and your family.

Janet

[Jaime]

I just wanted to thank everyone for the wonderful advice and kind words! I feel so much better knowing there is hope for my mom. You all are great! Thanks again!!

[Lisa O]

Jamie,

I am so sorry this is happening. Please know that there is a great deal of hope that things will improve once the doctors have had a chance to fight the cancer. Hang in there. In the interim, it is important that you eat and sleep so make sure you get some help and support if you need it, either through medication (many here will offer advice on that and your doc will have suggestions) and through this group and family support groups in your community. Please don't try to internalize this on your own.

Lisa

[carls]

we all understand what you are going through. it is great that you found this site becuase it offers so much hope and as you will see there are many long time survivors.

my dad was diagnosed last may and we know that we can not ever lose hope!

[Maryanne]

Hi Jamie,

So sorry you mom is going through this. It is always the scariest times in the beginning. She must be devestated expecially since she was not a smoker and has this horrible desease. She probably thought never in a million years would she come down with LC. But people are going to have to start knowing that anyone can get this. No one is immuned to this.

You are a wonderful concerned daughter. Just be there for her and your dad. Do what the advise of others here have said. Show up do chores, things that would take some of the burden off your dad.

As you see by so many posts to you, people here have had some incredible profiles, and they are doing fine.

Just know that LC is not a death sentence that people beat the odds everyday. Once she starts to really fight this, she will feel better.

My heart goes out to you and your family. Poor lady, she has been in and out of the hospital. Let's pray she could stay home now.

I am sending meditation healing prayers for your mom. And strength for you, your dad and your sister.

Your mom will come around, just give her some time.

Maryanne

[karenl]

Hi Jaime

I can't add anything worthwhile that hasn't already been said. But I just wanted to let you know that my Mum was also stage IV at diagnosis. It is devastating, but the others are right, it will get easier with time. Mum is still here and doing fine 19 months later, so stay hopeful!!

I hope your Mom does well, sounds like she has a great support network - so important in this battle.

Karen

[irene ong]

I am new in this forum.

My father-in-law is in his stage 4 lung cancer which has already spread to his bones and also has head tumor. Now he is in hospital and looks like his hands and legs are also swollen. Hands quite cold and a little yellow.

Please can someone tell me how long more can he last? i am scared at the thought of him going away.

[Guest]

Sorry to hear about your mom. Be strong - it's not an easy battle. My dad was diagnosed with stage IV in December. Also has problems with blood clots, so he gets shots of Lovanox; also had the IV filter put in so the clots don't get into heart. Definitely have your sister come visit. Your dad may not think he needs your help, but he does. Especially as time goes on...he will need a break. My sister and I help my mom out by going to visit with my dad so she can get out for a while and get things done. We also take over dinner sometimes to give her one less thing to have to worry about. I just joined this site, but it has really helped to read other people's stories of being diagnosed at stage IV and having survived. I have printed out a few to give to my dad for encouragement so he doesn't give up!! Be sure to tell your mom that you love her and that it won't be easy but she can fight it!