rinksgal

Michelle, I just wanted to say that I was very upset to hear about Bob! I wish I knew the right words to say to help comfort you, I can't begin to imagine how hard this time must be for you! Just know that my thoughts and prayers are with you!!!! Christy

Don, Sorry to hear Lucie is still having problems! But I'm glad to hear your kids and friends are helping you out.. Sometimes help from famly and friends is worth so much!! I'm thankful you are getting some rest and that you have help!!! I'll say another prayer for you and Lucie! Tell her my thoughts are with both of you!! Take Care!! Christy

Don, I will say some special prayers for you and Lucie today, I hope Lucie recovers quickly! I know with our loved ones in the hospital sometimes we end up more tired from always being in the hospital. I agree with everyone else, you should try to get some probably much needed rest for yourself right now. If your like me its hard to do sometimes. We tend to forget that we need rest too! After all if we don't take care of ourselves who will take care of our loved ones. I've had many people give me this advice, but I'm not always good at taking time for my own needs! I'm sending lots of good luck your way!!! Take Care!! My Thoughts and Prayers are with you and Lucie!!

I want to thank everyone that has responsed, I will mention some of these things to the oncologist!! Thanks!! Also what do you mean by a weekly iv?

Does anyone have any suggestions on how to keep Darrell from losing anymore weight.. Hes lost 15lbs in the past 2 weeks.. (not to mention he'd lost 20lbs before this due to no apetite because of his fever and not feeling good) The radiation he's having on the tumors in the middle of his chest... Its making his esophagus so sore he can't eat..They gave him magic mouth wash, and it helps some. But he complains about drinking even water...The only way he can drink anything is room temperature.. He says it feels like he's swallowing a golf ball... He is drinking two cans of boost plus a day. I wish he'd drink more than that, but he says it cost too much... I don't care how much it cost I want him to drink more of it, especially since hes not eating. The radiation oncologist told him if he didn't eat they'd put a feeding tube in. That scared him so he ate some chicken noodle soup that day, but hasn't since. Does anyone know anything else he can try? They told him it would get worse before it gets better.. He still has 3 weeks of radiation left. The doctor wanted to see us the one day before radiation, we were afraid they were gonna stop treatment due to his pain, Darrell says he'll lie if he has to, because he doesn't want treatment stopped not even for one day!! He wants this cancer gone!!! His hair and beard started falling out yesterday. We kept seeing it on his shirt, he pulled on his beard and kept getting bunches of it, so he shaved his beard and mustache off last night. Hes had it for 20 years.. He says he even looks whierd to hisself.. His son laughed, and his daughter cried. I cut his hair down to an 1/8 of an inch. Today hes started losing all body hair.. except for his eyebrows so far... He wishes the eyebrows would stay, but he doesn't think they will either... He says he don't care about any of it if it kills the cancer!!! He said he'd go without hair the rest of his life!! He really wants to beat this thing!! I'm just worried with him getting ready to start chemo again on Monday for 6 days straight that he will be sick this time and that might add to his weight loss. He did great the first time, he had no nausea at all, just got really tired and weak from levels dropping. Could he be sicker this time around? Or should he handle it like last time? The regular oncologist says that this chemo hes doing is the strongest chemo there is.... Open for "ANY" advice???

Michelle, I'm so sorry to hear about your husband, I will pray for god to give you the strengthen you need to get through this!! I am truely sorry and my prayers will be with you and your husband...

I'm really sorry to hear about your loss, my prayers with be with you!!!

My s/o had a tumor in his right upper lobe, 4.5 cm. has 3 in his lymphnodes largest one being 2.8 x 2.8 cm the other 2 a little smaller..

My s/o is having 6 weeks of radiation (he's just finished week 3 and he's getting ready to start his second round of chemo monday, 6 days worth. of cisplatin and etoposide. This is the second round with these two chemo drugs.. Then they are gonna do another ct scan and see how things work, but they plan to do 2 more rounds both being 4 days each, with a different chemo combo,(Originally they planned to start him on his second round 2 weeks from Monday, but decided he handled the chemo well and they said they wanted to be more aggressive especially since he also has 2 places on his liver, and they said they really don't want that much time between his chemo sessions. We also didn't know about the other 2 sessions they are now planning to do) we don't know what those two drugs will be yet... He also has 3 tumors in three lymphnodes in the mediastinal area. One tumor is as large as 2.8 x 2.8cm or was before he started treatment... I'm anxious to find out how his treatments are working... Good Luck and my prayers are with you!!

I will say a special prayer just for you!!! Good Luck!!!!!!! Christy

I like the way you think Norme. Darrell actually said when we left that he considered telling them that, or waiting till the meeting was over, but he just wanted to get home...

Shirley, I understand what your saying when you talk about how you want your husband to feel good. My boyfriend has felt bad now for 3 months and all he does is sleep, he keeps telling me he just wishes he could feel good enough to do something. He has no engery at all. Its like his whole body has been zapped! But I have to believe that he will feel better!!! He wants us to go cat fishing some night. I just pray that we will have a night together so that he can do this. I too get angry at this disease!! Its hard not to!! I mean just watching the person you love most go through this is so hard. I know I feel so helpless at times and I'm sure many others do too!! This is an awful journey we have to go through! and I too am thankful for every minute we have left together. I try to spend every minute I can with Darrell when hes not sleeping. Is so important to me to be there for him!! I will also pray a special prayer that your husband will be able to get treatment soon, and that he will regain his strength!!! This site is a great source and a very comforting place to come when you are feeling down. There are so many great people on this message board that really offers their support and this site allows us to vent so many of our emotions that not many people would understand..Whether it be anger, tears, sadness, etc... I'm so thankful for this site!!!!!!!!!

I agree with you Norme about the doctors "just" scanning the reports! How much stuff is overlooked due to this... You can bet we "WILL" get a copy of every report everytime he gets a new scan or test. We want to know whats going on. This is Darrell's life they have in their hands and I plan to make sure they are doing everything possible to increase his chances for survival!! We are already fighting a horrible disease and I believe everyone especially the Doctors need to fight this with every bit of knowledge they have and if they don't know then I expect them to search till they find something!! "Losing Darrell would be losing a "BIG" part of myself!!!!" And I won't accept that!!! My mother was surgical Nurse, and also worked on the heart team for years, and over the years I learned from my mother all the mistakes that are made and I myself learned to question and second guess everything they do. I want to know everything about treatments, and I watch out for everything they do. My Mom told me yesterday (who is in the hospital right now) Shes afraid if she don't get out of there they will kill her! She laughed and so did I, but she was half serious! She said they've tried to give her medicine twice due to a nurse not charting it. and she was unplugged from her monitor due to a bath and 5 hours later they hadn't hooked her up. She just causally mention this to the doctor when she noticed him stairing at her leads... Well it was taken care of immediatly after the doctor left the room. The nurse enters saying I thought the other nurse was gonna hook you back up...

Katie, I glad your on top of things for your Dad. I'm like you what is it with the medical staff that they can't tell you everything that is going on? I mean we have the right to know! Your Dad has the right to know, and when you think of all the problems we have getting the reports, it makes you wonder how many people don't push and never find things out. I'll be sending a prayer your way for your dad and you! Christy

Well yesterday after Darrell got his radiatin, they told us the Doctor wanted to see us. He apoligzed so us having so much trouble getting a copy of the ct scan, he handed it to us right away... I instantly started scanning it and it mention the pleural effusion in this report. (which he never told us about, he just mention not knowing if the fluid was malignant. But thanks to everyone on this site I learned what that could mean. It also mention that one of the lymphnodes involved was on the left side of his chest. which they told us only the right side was involved. It also says that he has 2 lesions on his liver now.. We were only told of the first one. I don't have the paper in front of me, but they were both over 1. something cm with one being 2cm After reading the whole report I told Darrell no wonder the nurses didn't want to give it to us.. For one thing we didn't know everything that was in the report, and through the whole thing it keeps mentioning maligancy....But at least we know now, whats going on. I don't understand why they don't tell you everything..

I want to thank everyone for their advice, I realize I'm not taking the time for myself. I guess I feel like I have no time.. Darrells son works and has football conditioning and then he spends most the time with his girlfriend. His Daughter works and runs with friends constantly.. She can't even handle being around her dad, says she can't handle it, says when she sees him it hurts too bad, so most nights she don't even come home until after 2am, just so she don't have to deal with it. I've tried talking to her about it. How important it is for her to spend time with him now. She has never been made to do anything.. Darrell blames hisself for the way his kids are, because the kids mother didn't want them and hes raised them since the oldest one was 7 years old. So he spoiled them and let them get by with things he shouldn't have. He said he always tried to make up to them for their mother being such a bad mom. He said he realizes now that he only hurt them by letting them get by with things and not making them do anything. He says its too late now, and ever since hes gotten cancer he even lets them get by with more. I realize I need to take care of myself too, because if I don't he won't have anyone to take care of him... When I first moved in with Darrell his 91 year old mother lived with us, and she was bed ridden and I helped care for her for a year till she passed.. She had Darrell her only child when she was 45 years old... So he has no brother or sisters....I did finally call the hospital information and found out my moms room number and what floor she is on. They have her on ctu...I talked with her yesterday....and found out details, she doesn't know much yet, but her heart rate was 233 when she was at the drug store and they called the ambulance for her, she couldn't even get up..They said her heart rate is irregular...I'm gonna call her today and see what the doctor has found out. Its funny that someone mentioned Crohns Disease, because my mother has this... I will try to get an appointment for myself sometime this next week....I realize I need some time for just me, its just so hard, and I'm torned between wanting to spend every moment with Darrell!! The thought of doing something for me makes me feel so guilty, when he feels so miserable! But I will try... thanks to all of you that have offered your help...

Norme, I know I'm getting all worked up over stuff I shouldn't be, but today Darrell asked for them, well guess what? That nurse forgot to do her job, and of course the Doctor was in another meeting. Well another nurse informed us that we wouldn't be able to understand the report anyway with our lack of knowledge. That kind of upset Darrell and he told her well what we don't know we research till we do understand!! But anyways the other nurse apolizged and told us she personaly will take it up on herself and have the report for us tomorrow, She said she was sorry the nurse from yesterday didn't take care of it. Darrell asked her point blank, does the report say something he didn't tell us and doesn't want us to know, but she explained that that wasn't the case and she was sorry if it made us think so, but then explained as you said about the laws and rules, but damn this is getting old.. Ya know.. So we'll see if they have them tomorrow... And we have been nothing but nice to them, except for a couple of statements after their rude remarks, like we are stupid. I even told the nurse today that we didn't want to be a pain, and I hoped we were coming across that way. She said she understood completely!! Thanks for your in put..it is appreciated!!

I'm like Christina I don't want to paint a dark picture either, but some lung cancer can spread faster than others. Darrell my s/o was told he needed no treatment after his 4.5 cm tumor was removed. Doctor told him he was a very lucky man to have found it so early, but less than 6weeks later they found it back in his lymphnodes and a spot on his liver. from the time they found the ones on his lymphnodes one of them grew a whole cm within 2 weeks.. Try to get her not to wait. I believe the faster treatment is started the better!! Good Luck with your mother!!!! I will say a special prayer for her tonight!!!!!! Christy

They almost admitted Darrell today to do some kind of antibiotic thearpy, but his levels were ok, but low...Although they have dropped considerably and he is at a danger level for infection....Today should have been a 30 min. visit, but turned into a 7 hour day!! Then I just called to talk to my mom my biggest supporter and my nephew answered the phone and says she is in the hospital, something about her heart, but he didn't know what!! I live in Ohio and my mom lives in Indiana. and with Darrell being so sick, theres no way I can leave him right now either. I'm the one that takes him to his visits! I feel so torn and I just started crying and I swear I don't know how much more I can take! I'm worried sick about her, and Darrell, how do you chose between such a thing!! Darrell needs me, I do have 3 brothers in Indiana, but they don't spend alot of time around her, 2 of them live an hour away from her, I live 3 1/2 hours away from her... Just say an extra prayer for my mother pleaseeee... I need to call my doctor because I can't eat or anything, my whole GI tract and stomach is so messed up. If I eat my stomach just gruggles and then hurts so bad that I can't even sleep!!! My stomach has been messed up worse than when we first found out that Darrell had cancer, and now its even worse!!!!! its been this way for a week now, but with him having to get treatment when do I have time to make an appointment for myself???? But then if I don't take care of me, who will take care of him!! Life sucks!!! I keep thinking its just my nerves and it has to get better, but so far its just getting worse!!! I don't have time for problems now. Does anyone know anything I can take to calm my stomach and intestinal tract down?? I know this sounds crazy, but I mean its so loud the grugling that Darrell can even hear it... When I go to the bathroom its like water, I know this sounds sick, but I thought someone would know what I could take, and maybe I can skip trying to find time for me an appointment!!

Ada, My heart goes out to you!! You always offer so much of yourself on this site I had to respond to wish you well!! Here I worry about Darrell having to ride an hour to all of his appointments, I can't even begin to imagine how bad a 4 hour ride was for you!! Sounds like you have a great husband, who knew just what you'd need!! I hope I can be as insightful for Darrell!! My prayers are with you and your husband!! Christy

I want to thank all of you for your information!! This site is so helpful to me and I'm sure to many others in my situation!! We went today again for his radiation treatment, He had me ask his nurse while he was getting radiation to see if we could get a copy of his most recent ct scan that they did a week and a half ago.. I got so mad at that nurse I could have choked her until her eyes popped out. I didn't let her know this of course!! But she said she couldn't release that information to us without the doctors say. Because I have no way of knowing if hes talked to you guys about the results. I told her he did so just yesterday. But she continued her little speech about legal stuff!! and how she has to get permission from the doctor and only then can she give us a copy of it. She said he was in a meeting at that moment. Plus we really needed to go up to a different floor and sign something stating we wanted his medical records, etc.... and if we wanted them sent to a different doctor then she would fax them for us. She was a real witch! She also informed me that she couldn't give them to me anyways!! I told her well thats not a problem because he is here, he just wanted me to take care of it for him while he was getting treatment!! I ended up telling her fine then you get permission from the doctor and then tomorrow when we are here we will pick it up.. So anyways thats whats suppose to happen! I told her before I walked away that, this is sad, aren't we already going through enough without having to fight people just to get a "copy" of his written report of the ct scan, his own personal records of his body!! I walked away in tears!!! I told Darrell about it as we walked out of there! He wasn't very happy about it either, but told me it wouldn't do any good to get upset!! I've never had any problem with getting stuff for him from anywhere we've been! Most people have had him sign a paper putting a list of names of people that any of his information can be given to!! But the nurse's at the james says he has to give me power of attorney before they can do that!! I think this is a bunch of crap!! I told them like he wants to do that, why can't they just give us a paper for him to sign like everyone else!! Don't people only give power of attorney to someone if they can no longer take care of their selves?? You know it is sad we are already going through so much stuff!! Like we need somewhere else to go or something else to bother with!! I think they try to make our lives more miserable!!! I am there with him every single day!!! We drive an hour to get there and an hour to get back home!! he feels like crap and they want him to do more. When all they have to do is make a dang copy of ""HIS" ct report!! Sorry I know I "VENT" alot on here, and I realize it does no good to get angry, but sometimes its so hard!! I guess I'm angry at the disease and that they can't do more than they do for people with lung cancer!! and then the doctors, I know they are only human, but sometimes I think they are all alike in some ways, Its just a job they do everyday of their lives. I'd like to think they are in it because they have compassion and want to make peoples lives better! Maybe most of them are!! its just hard watching someone you love be so miserable!! I appreciate all the information on the pleural effusion, and I plan to ask them about that fluid at the next doctors visit... Thanks!!

I just read on a site on the internet that the symptoms of pleural effusion are: shortness of breath chest pain hiccups cough rapid breathing well Darrell has all of them except rapid breathing, and I haven't noticed this, and he hasn't complained about this.... I thought about telling him what I read on here about maybe it meaning he has pleural effusion, but decided against it... I want him to stay possitive... and I"m afraid now that hes back to not being so depressed that if I mention what you guys told me that it will make him take another nose dive...I just don't understand why the doctor didn't mention this to us as being a possibility??

When I looked up pleural effusion online it says its in the lining between the lung and whatever. His is in the lung, is this possibly still pleural effusion???? I'm so confused....If it is why didn't they mention this? I have read other post about this previously, but I don't remember much about it. I will search the site now for information on others with pleural effusion. How does the fluid get on the lung to start with. I know adenocarcinoma is a mucous related cancer. I just don't understand all of this.. I get so aggervated!!! Hell 2 months ago we thought they got it all, and they said no treatment needed and hes a very lucky man and now with in a month he runs fever again and we find out its back and in his lymphnodes... Not to mention he had a 7mm "spot" on his liver,in the original ct scan.(which the report reccomended a mri, which no one did) now its bigger but they still act like they are just gonna watch it. I just don't get it. would they treat their own family member in the same way????? or would they do all test possible even if insurance wants you to follow a certain route??? Is it all about money???????????? To HeLL with all of them!! I'm so fu**ing mad at the moment!!! I just don't get it!!! If it was there within 6 weeks after surgery and all 9 lymphnodes they checked were negative for cancer how can this be happening now??? I read online that it can travel through your blood stream too, and I asked his oncologist about that, he said yea, but its not likely to spread that way with his lymphnodes being clean...but nothing is 100% with medicine!! Well no shi_, because apparently Darrells must have been there or we wouldn't be going through all of this shi_ now!!!!!!!!!!! I'm sorry I sound so angry but I am!!!!!! hell a month ago they acted like nothing to worry about and now its in his lymphnodes and possibly in his liver, which they of course are watching!!!!!!!!! Hell I wonder am I gonna lose this man that I love so damn much or does he have a chance to beat this horrible disease!!!!!!!!!!!!! I hate the word cancer more than I've ever hated anything in my whole entire life!!!!!!!!!!!!!!! My whole life will be destroyed if I lose him!!! I will have nothing left!!!!! My own kids are grown and have their own lifes, what will I have left!! Don't get me wrong I'm not counting on him dying!! I will fight with everything I have in me and then some, but I just don't get it!!! So tell me if hes got this pleural effusion, how bad is it?? I NEED to know??? So if it means its spread to his chest outside of the lymphnodes then its just a matter of time till there are tumors there too??? Is that what your saying Johnathon??? You say progressed to that area, don't be nice, tell me do you mean tumors could start growing in that area?? If so I NEED to know!! Or with chemo will this prevent this from happening? and How often does chemo not work, or radiation not work??? I mean by now I know he has an agressive type cancer.. Its very fast growing!! We have decided that poorly differentiated meant a hell of lot more than we realized!!! Hes had a bad feeling all along about this, even when they said no treatment needed!! What a fu**ing joke!!! I'm sorry for the provantity, hopefully this site bleaps it all out!!! I just don't feel that I can express my anger in any other way. I hope I don't offend anyone on here!!! I'm so tired of being nice and listening to people witch about stuff that doesn't matter!! I WISH I had their worries!!!!!!!!! I'm not losing it, but I'm getting so damn angry!!! I hate seeing what this stupid disease is doing to the man I love!!! and I feel so dang helpless!!! Theres nothing I can do to make him feel better!!! Theres nothing I can do to make it all go away!! I wish to god I had that power!!! I would wipe this horrible disease from everyones life!!!!!!!!! I don't want to lose him, and I don't want and I won't give up!!! CAN HE BEAT THIS??????????????? I'm scared of that answer!!! I wonder in mind if he doesn't win, how long will he have? 6 months, 3 years, 5 years!! Hell his oldest son will be a senior this year, will he make it to see him graduate??? Darrells own dad died when he was 19 and he doesn't want the same thing to happen to his own kids!! But does anyone know the answer to this??? I doubt it.. Can they really tell us whats gonna happen??? I know they can't because everyone responds differently to treatments, and whos to know how darrell will respond to his? I wish I knew the answers to all of my crazy questions and I know I"m babbling again, but I have to get this anger off of my chest or I will expode!!! Again I am sorry for my crazy actions on here, but I know all of you understand and there probably isn't anyone I know that would understand everything I'm feeling!!!! Sorry!!!!

I haven't had time to write on here lately, although I have taken the time to read a few post. With Darrell now on his 2nd week of radiation and has his first round of chemo done. (6 days of cisplatin and vp16) There has been so much stuff going on, I feel as if I haven't had the time to breath!! We live on a farm and have hogs,(sows, baby piglets, turkey, chickens, and goats not to mention a pregnant cat, and 1 dog and 1 new puppy which is in the picture, Darrell has always wanted a chihuahua, so I encouraged him to get one. It brings smiles to our faces when nothing else would have!! Hes spoiled rotten too!!!! I feel like sometimes I'm the only one doing anything!! His kids are 20, and 18, and pretty much worthless when it comes to helping! But I'm surviving!! I know it sounds like I'm whinning! Anyways Darrell has done pretty good!! Hes been really tired and as he puts it blah feeling. No engery!! This weekend he developed a new fever which spiked up to 102.7.. We didn't know who to call, we tried about 4 different phone numbers and we got no one.. We now know what to do if it gets over 104.5 they gave us a number to call and also told us to go to the ER if it happens again. He started with a new fever tonight, so far only 101.1 So we are watching it... Hes started coughing up stuff, which they said he would. I guess I should start at the beginning. We kept being told different things. The oncologist called last Thursday on our cell phone and told us he was negative for lymphona, and told us he had 3 tumors and told us their sizes, he's a foreigner so it was hard for Darrell to understand him on the phone. He also mention the place on his liver again, and said he has fluid on his lungs. Darrell asked him twice through out the conversation if he thought the treatment was gonna take care of it. and the doctor responded both times with the same answer saying that we will just continue the treatment as planned. By him not giving Darrell a direct answer, he took this to mean that it wasn't looking good! So for that next 3 days he was so depressed and no matter what I did or said I couldn't even get a smile on his face. Plus then he ran fever all weekend and started coughing up stuff. Today we saw the radiation oncologist, and he had said that there was several lymphnodes involved. So we weren't sure if the tumors were separate from the lymphnodes or what. So we asked the Radiation Oncologist today and now we know the 3 tumors are in his lymphnodes. and that he doesn't have separate tumors outside of them in the chest. But he also told us that he has a place on his liver that they are watching. It being 1.5cm x 1.2cm. We know from his original ct scan the "spot" he had before surgery was 7mm.(with them saying it was "JUST a cyst" So if its any cm at all wouldn't that mean it had grown? I don't understand why they don't give you straight answers. I told him that Darrell feels like if it is in his liver that he feels like he doesn't have a chance at all, and he said, "well, it is bad to be in the liver" and left it at that, except for saying in a couple weeks or so they will check everything again. I'm afraid to pinpoint them down too much, due to the fact when Darrell hears bad stuff he gets so depressed, and I believe he needs to stay positive in order to beat this thing!!! The radiation oncologist told us if we have "ANY" questions at all, just ask to see him even if we weren't suppose to see him that day! We both really like him!! I guess one of my main questions is this...The radiation oncologist mentioned that he had fluid in his lungs and they didn't know if it was malignant. What would that mean???? I was gonna question him about this, but he was talking and I didn't want to interupt, and then it slipped my mind because he started talking about the liver...Darrell brought this up at home. I thought maybe I'd heard him wrong, but Darrell heard the same thing. Can the fluid itself be cancerous???? Next time he coughs stuff up they want him to look at it to see what color etc.... he hasn't before. I know I have rattled on and on and I don't even know if I make much sense anymore. I'm holding myself together better without crying everyday, I guess my own medicine has kicked in!! For a while I thought I was gonna lose it!!! Thanks for listening to me babble!! But would appreciate any information anyone could give me on the fluid on his lungs. Thanks!!

My boyfriend was also told to use a non alcohol base mouthwash, but they also told him if he did get sores, to let them know and they would give him a perscription for some kind of Magic mouthwash??? Not really sure if I'm right about the name... anyone else heard of this?