Snoopyfn

hi.... I am sorry you are dealing with this...unfortunately uncertainty is par for the course...I guess if you really look at it..all life is uncertain..but it gets brought to light a lot more in these circumstances... it is defintely easy to get caught up with all the worrying..esp in the beginning...and while our loved ones are a priority..it is hard that "regular' life still goes on around us and does not stop...therefore we still do have to worry about bills and all the normal everyday things ON TOP of all of this new cancer stuff... that was what has been frustrating for me... life continues to go on all around us and stops for nothing... realy my only advice is to slow down and take a deep breath and tackle things one at a time... it gets way to overwhelming to try and deal with it all at once.... right now..your concern should be with his dx and treatment plan... then you will have more infomation to deal with all the other issues... it sounds like you were fortunate twice to have this caught so early...so try to take some comfort in that....many find out way too late.... I dont know where you live but if you are in the States...if he has to take off for a large period of time...he is old enough to apply for and start Social Security...so you do have that to fall back on... I live in CA and fortunatly here we pay into a State Disability fund...my husband can collect up to 1 year of Disability through the state that amts to appro 60% of his salary and it isnt taxed...I am also fortunate b/c just 5 years ago they started a paid family leave fund through disbility so a caregiver who is losing wages to care for a spouse or child can collect up to 6 weeks paid leave....I am in the process of applying for that now.... you might look into if there are any state programs where you live.... you have found the right place to go for help and understanding with this awful disease.... welcome...

I do the "coffee table" trick too... there is always a bowl of snacks in front of where my husband is most of the time...that was he can get his own when he wants...sometimes he seems to eat/snack more at night...plus he can feel more independent..like he is getting his own..I think a lot of times he turns things down b/c he doesnt want to bother me or feel like he is a burden... the snack bowl helped a lot... I also keep a bottle of water infront of him all the time and everytime I would go near him I would say "water is your friend...water is good"..that was usually enough for a smile and a swig! after radiation my husband was in the same situation..barely ate or drank...and there was nothing I could do really to get him to take the fluids in... i used to be happy when he would agree to take miralax b/c it has to be mixed with water and I knew he woudl at least get some fluids in then! also if he is on steroids (decaron / prednisone etc) make sure he is taking them regularly..this should help with the appetite as well... I hope things turn around for you soon...I know how scary and frustrating it all is....

boy I hear ya! I havent posted i a while b/c we have had so much drama here over the past two weeks... it just never seems to let up... and when it does for even a moment you almost resent it b/c y start letting your guard down again... my husband could have died over a week ago due to heart failure/breathing problems... we were all preparing ourselves for it.... then the lasix they gave him cleared everything up over the next day and he was able to go home again...we started hopsice the next day but we at least have him a little bit longer... as much as I want him around it almost upset me to think I will have to go through this all over again when the time looks close... it is almost like a cruel trick....a tease... it is funny ( strange) to read your post today b/c I was just thinking how much I wanted everything to be "normal"...I want my life back... I want to go back to work...take my daughter shopping...etc... but I cant even wish for that b/c that would mean that my husband isnt here anymore.... cancer has robbed us...it teases us... I have my own cry sessions...and I like you have to find a place away from everyone...sometimes in the car on the way to and from the grocery store...sometimes in the bathroom...sometimes at my computer.... I hate this too! I hate the helplessness...the not knowing what bad the next day will bring...but knowing every day is a day closer to him being gone... I hate that he is here and I want to spend time with him but he is so tired and weak and rests a lot...time with him is getting away from me quickly and there is nothing I can do about it....

thank you.. I am extremely frustrated today with the waiting... the home nurse called the dr this morning to try and get results from the xray... she was told a nurse practitioner would look at them and call back...of course we still havent heard anything then my husband decided he wants to try and do what he can to treat this... if it is fluid then have it drained...if not..he wants to see if any treatemnt can be done and possibly see about doing chemo... he hasnt done any to this point...I think the breathing difficulties have pushed him into action... it has to be the scariest of all symptoms... at least I would think so...anyway he told the nurse this and she was trying to get us an appt tomorrow...she was here onhold for quite a while then she left while still being on hold and said she would call...but still nothing.... it just irritates me the attitudes sometimes...I just wonder how they would feel if they hadnt been able to breathe very well for a few days and the possible answer was available already and no one was doing anything.....you know? if it is fluid...we could have had it tapped by now....but we are waiting and waiting and waiting.... luckily I think he is feeling a bit better today... still on o2 contantly but.....not so much blood in phlegm....coughing is a bit less... just would like an answer....

I am so sorry you and your family is having to dealwith this at this time....you dont need the added stress... it seems to me they are obviously in some sort of denial about his prognosis... at this point, if e is not suffering in anyway you are doing what is best for him. There is no reason for him to be in a hospital or have inpatient care at this time.. I hope that they "get it" soon so as not to cause your family any more stress than it is already under...

thank you to all who responded... so much has happened/changed in the past couple of days.... I feel we got the O2 just in time as now he is needing to be on it constantly... this is quite a change from just a few days ago when he just got short of breath when exerting him self and only 1-2 times when he hadnt done anything... I ordered the oxygen as precautionary on Thur and here it is monday and he is now dependant on it.... I am quite scared... I finally got the dr to agree to write a rx for chest xray for the imaging center so we could go down, have the xray and go home to wait for results...they wanted us to go to ER! Which we did not want to do... if it isnt fluid...there may not be alot that can be done and we didnt want him being stuck at the hospital and not be able to come home! frankly it is bothersome when the dr seem to want you to go to ER for everything...and it is no wonder there is a problem... today all we wanted was a chest xray... the first time we had to go to ER the bill to insurance was over $9000! are they expecting to bill that just for us to get an xray? that costs $100??!!!! I told them I thought that was assinine! We do not want to abuse the system... anyway...we had it done... but he is getting more and more short of breath... today he had blood in his phlegm..not a good sign... he coughed and not only got light-headed but to me it seemed like he had a mini seizure... his arm/hand kind of shook for a few seconds and he had kind of slumped over momentariy.... earlier he had numbness in his fingers/hand... all not good signs... waiting on results from xray... if it is fluid, we will go to ER to have it drained...but at least THEN we would know WHY we are going!! if it is not flud then we will have to call home health and have him switched over to hospice b/f he gets even worse... it is scary right now.... thank you all again for your responses and well wishes....

husband smokes Marlboro lights.... and unfortunately is still doing it...prob even more! I hate buying them for him.... I feel like an accomplice! then at the cigarette store..they smile and thank you for your business, give you a lighter and a punch card to get discounts on MORE!! I think to myself sarcastics thoughts of "yep..here I am buying cigarettes for my husband who is at home dying of lung cancer...." I hate those tobacco co too!

sorry...lots of background first... I am caring for my husband...he currently has a palliative care nurse that comes by 1-2 times a week...he is on no treatments and it is unlikely he will be on any....we just got oxygen yesterday..he finally qualified...he tested at 85% so that is a mixed blessing if you know what I mean it has seemed that everytime he seems to maybe have enough strength to try chemo he has bad days... and even his good days most would consider bad...he can walk to the bathroom and kitchen but only gets up from the couch to do those...other than that, if he is up too long he gets sick, nauseous etc.... Currently his pain is manageable but it is increasing... he currently is on fentanyl patches...I put 2- 75's on him today b/c his 100's werent totally cutting it... he also takes norco and oral morphine drops for breakthrough.... the past week he has been getting increasingly more short of breath... we have always known of a tumor that is threatening his main airway...his only treatment was radiation of that tumor...he did about 8 treatments...they ended about a month ago... I am concerned that it is looking apparent that this is how he is going to go...this is the LAST thing I wanted for him...I am realistic and know he is dying but I didnt want it to be of suffocation...the dr told us when this started back in March that if it were to come to this then they would do everything possible to make sure he doesnt suffer...this would mean to highly sedate/medicate him etc etc... We arent at that point yet but feel it is going there... I wanted an xray to see if it is fluid or tumor but the dr wont sign off on it happening here and said we should go to ER! this is ridiculous..it is not an emergency YET... cant they see that we are trying to be proactive?? No wonder the ER's are so screwed up... three times now we have had a situation that wasnt immediately life threatening and we have tried to go by other means and the Drs left us no choice but to go to ER... one time by ambulance....it is just stupid if you ask me... ANYWAY...the Home Care people, his Dr and his family have all be somewhat pushing for hospice... I dont think he is ready "mentally" for that...I dont know if I am ready "mentally" for it... Palliative has been good so far...she comes 1-2 a week and is there if we need something... his pain is undercontrol right now and he has some..albeit little..mobility... As soon as hospice comes...any semblance of normalcy will be gone... I have read some of the threads regarding hospice and frankly it scares me! plus we are not ready for that kind of intrusion in our home yet....all hospices are different BUT... he likes the palliative Nurse and would hate to rock the boat right now... I dont know how close or far away he is to "passing" but I just dont feel ready for this change... I need some perspective though...how many of you have felt pressure for hospice and what did you do? Am I being realistic here about it? His sister is mking me feel I am doing both of us a disservice by not caling them in yet... he is not greatly suffering...I think it would be a bigger blow to him to have them here.... things are being controlled currently and the palliative care can be switched to hospice rather quickly I have been told...they offer both...they said it is just a phone call... I personally wish I didnt have all this extra pressure right now....

hi... yes you do need to go to the Dr. and make sure they do a chest Xray... I say that b/c my husband had symptoms and went to the Dr and twice was given what I call the antibiotic brush-off! It wasnt until one of th emeds they gave him caused him to cough up blood did they find out he had a massive pleural effusion and stage IV NSCLC... he coughed for a few months before that....to the point of passing out once or twice... he had extreme fatigue every afternoon... he lost about 25lbs in 2 months due to lack of appetite.... the drs thought it was just a sinus infection...I knew it was more...they finally did a chest xray an that is where it was found... I know my husband didnt want to go for the same reason...he was afraid they would find something! BUT you have got to realize that the sooner they find it the more "fixable" it is! My husbands wasnt found until it was too late... and if this ISNT anything major...which we all certainly hope it isnt... you will get relief from your stress by finding out.... please go get checked!

My husband has smoked for 33 years...since he was 14! It is my understanding that statistics show that once you get lung cancer if you keep smoking it doesnt really affect your prognosis/life expectancy...UNLESS you go into remission THEN your odds of getting it AGAIN do increase if you keep smoking... my husband is still smoking but he is not expected to survive this so I have not pushed him to stop...he has enough going on already...

I just wanted to say I am truly sorry you are going through this... I can certainly relate to most of what you said about your wife being upset about not doing what she used to... my husband has been like that too and it breaks my heart.... I want our life back too! It wasnt perfect but it sure as H beats this any day!!!

I truly appreciate all of your responses..I really do.. but if you were here and saw..you would know that 2nd and 3rd opinions just arent possible. He is so weak right now. He has not eaten anything since yesterday morning. and rarely has eaten at all for weeks now... Barely taken a couple of cups of fluid today and most days. Today he has slept most of the day and when he is awake he is not all there. he hasnt gotten off the couch since this morning. He has left the house maybe 10 times in the past 6 weeks... to go to radiation and 2 dr visits.. it was all I could do for that. While I have read some remarkable stories you all know there is a point of no return...I truly think we have reached that. And even if he hadnt, he is not fighting this... it wasnt until yesterday that he came right out and asked the dr his prognosis... and it has been 2 months we have been dealing with it... I am so glad to hear of your stories of being around 5 years after a stage iv dx...but there are such varying levels of health... my husband was already unable to work when he was dx due to massive pleural effusion... we think his strength and health worked against him...he was able to tolerate symptoms too long if that makes sense... I appreciate all the well wishes I really do... but I dont think there are any miracles here....

there will be time to be sad for me later... I am so sad right now for him... he is carrying such a huge thing... he hasnt even been able to start chemo yet... he asked to speak with the onc yesterday..he asked his prognosis..she said much less than 6 months..then clarified... 3-4... this is consistent b/c she said 6 mths 2 mths ago... he told her he hasnt had much appetite and she said...that isnt good...but we all know that... he asked if the chemo would prolong his life and she said it might that is why they would want to try...he said he would get back to her... he is having to make a huge decision right now.. if he does nothing he will surely go soon... if he does try chemo..it could prolong his life but make it even more miserable or it could have a negative effect and shorten his life even more... so many things we all take for granted...and even complain about... work, chores around the house...things he would love to be able to do right now he cant.... I am sad for all the things he cant do... sad for all the things he will never get to do....things WE will never get to do....I think of all the things we put off b/c of one reason or another... vacations we ddnt take... 'maybe next year we can"....there was always next year... now we dont even know if thereis next month! I truly cant imagine what he is going through...if it is anything like I am imagining...it breaks my heart.... I am sure this is a very lonely and separating thing... knowing everyone around you can talk about the future in big terms...you can only speak of them in small (days, weeks, months) I am sorry for being a downer... I just had to say it somewhere... I know a lot of you can understand...unless you are in this situation..you cannot... this overwhelming feeling of impending doom...never goes away..it is always there... I had a dream a few weeks ago that he was killed in a car crash...instead of waking up relieved that it was a dream...the reality hit and I realized it was a whole other nightmare..... there will be time for me later but for now..I am sad for him.....

thank you all again so very much.. the ups and downs of this are crazy! After he got fluids in the hospital and the chest tube out..I was hopeful to begin chemo...I thought..if we could just get to that... maybe there will be a chance of some improvement/turn around. The appt was today... he wasnt up to going but I can at least still tell he hasnt given up on going...he does want to speak to the onc. So we will see... He is doing better again today right now and even ate a little bit. He was actually overweight to start out with so the 50+ lbs he lost actually put him "on paper" at a healthier weight. He is 6'2" and is about 205 probably right now....you can def tell though the disease has taken his muscles first...he doesnt move or walk a lot so his legs and arms have gotten really thin.... I am glad to hear of stories of encouragement...that is so great Sherry that you are able to go back to work... I know he would love to do that and anything that would be construed as "normal"...help around the house etc... yes I totally believe your mind has a lot to do with it...to have that "fighting spirit" is something that he is lacking and I wish would develop... Thanks so much everyone! you are all great!

Thank you everyone for your replies.... We are at a crossroads now b/c chemo is/was last/only treatment option. It is not looking good that we will go tomorrow. This means it probably wont happen at all. I am a bit worried right now. He absolutely wont eat and has barely had anything to drink. Just enough to take meds and then 1/2 a beer. His feet are swollen again...he has slept most of the day. There have truly been a lot of ups and downs during the past 7 weeks...unfortunately recently more downs than ups. He does not want contact from anyone really except me. He will tolerate from brother and sisters at times...but never anyone on the phone.... I am glad that many of you have had good results from treatment and outlived what you were originally told. Unfortunately in our case, I think we got a dx way too late and then the delay in starting chemo b/c of the chest tube didnt help... I feel pretty helpless most of the time b/c there isnt much I can do or that he wants me to do. I dont think I said before...he is only 47....it is hard to see him like this..he had such a big personality and most of it is gone. He is frail and week now.. lost over 50 lbs in 4 months...such a cruel disease. I hope that you who have it have the strength to fight it and strength to the caregivers as well... not an easy position to be in..so much to deal with... Thank you so much again for all your well wishes! Nova... I just had to say I thought it was interesting about "Pa"... my daughter calls my father that.... when she was younger that was all she could say...instead of "Grandpa"...so "Pa" stuck! Rich..how great for you beating all the odds! I certainly wish you continued success..it isgood to hear positive stories....

I found you guys a couple of weeks ago and have been reading...you all sound so great and supportive... it is just so sad to meet under such circumstances.My husband was dx'd in March '07 Stage IV NSCLC. But I will back up.. he had pain in his back and felt ill/tired starting in Dec '06. His primary wasnt available and his collegue said it was probably a kidney stone and prescribed antibiotics and pain relievers. Nothing ever passed but the pain eventually went away... he still felt generally ill and tired. In February, he went back complaining of a dry cough and general illness.. again we got the antibiotic "brush off"...saying it was probably a sinus "thing". I knew it was more than that! He took the medicine the Dr prescribed and started coughing up blood and didnt get better...decided to have a complete physical... told Dr of blood and they wanted him in right away. Did chest Xray.. complete white out of right lung!! By this time he was very SOB... lots of trouble getting through ER... had 2 liters of fluid drained March 2. CT scan done...showed signs of cancer. Admitted to hospital March 14 to drain pleural effusion and do thoradesis. Another 3-4 liters drained at that time..lung was totally collapsed.. had to get opened to do talc... ended up going home with chest tube.. officially told of cancer 3/17... nodules in left lung, tumor in right... ct scan showed bone mets. Tumor in right lung blocking air from fully opening right lung... under went radiation to tumor to shrink.. went to 8 of 10 appts...he was supposed to go every day for 2 weeks but felt so ill at times it took 3 weeks to do 8 treatments...Onc said that lung sounded clear and to check it out may not have to finish radiation. Tube fell out last week had to go to ER... they couldnt get tube back in without making new track... his Dr came down...looked at xray and said that lung still wasnt opened even after 6 weeks so still couldnt do talc... decided to leave tube out and hope fluid doesnt build up quickly...he is supposed to start chemo tomorrow...they couldnt do it with the tube in...but he is pretty weak and doesnt eat much...or drink much...not sure if he has energy or desire to go through it.... As for me...Fortunately my employer is letting me work at home during this time. This has been a great help to me. It is all just a struggle though..life goes on no matter what along with all of this...sometimes I would like to take a week vacation from my whole life but obviously not possible. I have a 14 year old daughter...enough said there! Sorry if this was a ramble...tried to keep brief... anyway... everyone here seems really great... it is hard b/c I dont get out much..my only contact with the outside world is thorugh emails for work and a couple of message boards...