mscyn4u Posted July 30, 2003 Share Posted July 30, 2003 Hello Everyone I get on when I can now and some of you know our situation, but for those that don't know here it is. My husband had a lef lobectomy on June 26, 2003 and today July 30, he is still in the hospital!!! I am seeking help from anyone that this has happened to. Rob's biggest problem is he has 1 chest tube that WILL NOT STOP DRAINING!! The doctor have become befuddled and finally decided to bring in some other specialists. Rob's body keeps producing pleural effusion on his right lung where he had cancer in 97 -98. Yesterday was his 3rd thorancetesis and they pulled 400 cc's of fluid off the right lung. He then drained 350cc of fluid out of the left lung into the chest tube. He has problems with his feet and ankles swelling every week. They put him on Lasix intravaneously and it goes down, soon as they stop it he starts swelling back up in his lower extremeties. They performed a catherterization last week to see if he had any major heart blockage and he does not (Praise the Lord). I have read on line that pleural effusion can be a sign of cancer malignancy, however they say they have been testing the fluid and it does not have any cancer cells. But I also read it can sometimes read negative and be cancerous. The lung specialist told me it does not have the chemical makeup of the pleural effusion that is cancerou. They kept saying maybe his lymphatic system is messed up from the previous chemo/radiation and it won't absorb the fluid. He is not a candidate for pleuridesis because he produces too much fluid and it would jell up and cause other problems. I am at a loss and I see my husband that went in the hospital, looking healthy pyhsically and mentally, no outward signs of cancer Now this hospital stay is taking him away from me. He has lost weight, he is sleeping all the time (I believe it is meds and depression) he now has thrush in his throat and sounds horrible (being treated with Diflucan). He has anxiety attacks and becomes short of breath. He had a fever the other night that spiked at 104.2 and they don't know why yet. This is becoming a nightmare. I wish now he hadn't had the surgery. They told us it was early stage cancer and it would save him if he had it. Now it seems to be draining the life out of him. Then he has to follow-up with chemo!!! I don't think he will be well enough mentally to go through that with all this from the lobectomy!!! They are bringing aboard a pyschiatrist, an infectious disease doctor and a kidney specialist to get more answers. They all claim they have never seen anyone have a chest tube draining this amount of fluid for this long. I think he has filled up 5 pleurovacs on this one tube in the 4 weeks he has been in the hospital. I get frustrated at him because he seems to want to zone out and not fight!!! I try to get him to eat, he won't eat hardly anything they have been giving him Boost to drink and he sends it home, I have 30 cans of Boost here, he claims he will drink when he is home. I try to get him to walk outside carrying the chest tube, he will go downstairs for maybe 15 minutes then he says he cannot breathe good because it is hot and humid, comes back to the hospital bed and crashes out!! I had just lost 28 lbs through Weight Watchers program after going for a few months when he went in, now I cannot attend anymore, because we don't have the money and I am not following my program of exercise and eating properly, because I am at the hospital everyday. I believe I have gained at least 5 of those pounds back going through this. I am torn, I want to take care of me and he wants me there with him, I cannot find a good balance!! I am crying at least every other day for something, this is an absolute nightmare!!! They told us originally for a lobectomby the hospital stay woud 7 - 10 days this is day 33!!!! If our HMO has a max out point we will be in trouble. I better not get sick!!! It is time for my yearly physical and I haven't went for all the test I have to have. You know being 50 you have to have a few!!! We are a young 50 and 51 and this situation is making us both tired. We are both edgy instead of loving while in the hospital. He is upset with me because I try to encourage him to get up and move. I get upset with him because he is laying there being so passive about all this and won't FIGHT DAMMIT. Sometimes I just want to leave and say I wont' come back until you are ready to fight this!! He called me at 12:30 a.m this morning from the hospital saying he believes he is in depression and has been a long time. I left an article that was in Newsweek about Men and Depression for him to read. I was so upset I left the hosptal at 8:30 p.m and said if you get a chance please read this, so he couldn't sleep and decided to read it and found out depressed people don't know they are depressed and he says he has all the symptoms, I tried to tell him that before, now I will see if he follows through with the physicatrist. I know I haven't been much help to anyone else here on the message boards because I have been so tied up in our situation, but please understand. This is my first time dealing with this cancer situation, as we were not together when he went through it before, he was alone. We remarried after 15 years apart last year and I did not have a clue that once cancer was gone for 5 years it would come back. Now I am becoming well aware. Also with him having 2 primaries, does that mean he has a chance of both primaries having a recurrence?? The thought makes me want to break out in tears. My husband needs to get up and get back to work, that is his outlet, his feels like he is accomplishing something when he is working and taking care of me, because he didn't do it right when we were together in our 20' and 30's. He is feeling worthless now and scared we are going to lose everything. How do I help him without continuing to lose me?? Who has any experience or knows anything about pleural effusion?? Can anyone help me understand all this???? PLEASE THIS IS AN SOS!!!!! Quote Link to comment Share on other sites More sharing options...
Ry Posted July 30, 2003 Share Posted July 30, 2003 Well here's a thought: I am guessing that the problem may be the radiation he had in the past is keeping him from healing now. Once someone has the maximum dosage of radiation it is my understanding surgery is not possible in the future because the area will never heal. This was explained to my husband and myself during his radiation. The radiation was stopped and he was reevaluated for surgery before they went on to the maximum dose. So if I were you I would ask for the radiation oncologist that treated him in the past to come in and do a consult. Let us know what happens. Thinking of you. Quote Link to comment Share on other sites More sharing options...
norme Posted July 30, 2003 Share Posted July 30, 2003 Oh Boy, this is a very hard post to answer but maybe Ry is right about the radiation. It sure is worth trying. We think the drs know all the answers but they don't. they are learning everyday about the healing process as we learn everyday something new about lc.... I know what you mean when you say you are overdue at the drs. I too am overdue but it will just have to be that way for awhile. I have put myself on the back burner. That is how i want it....you may feel differently and if so then take the time and go for it....he is at the hospital right now and that is better then being home and you having to leave to go to the drs. without someone to be with him.... Hope that fluid decides to shut down soon...God Bless Quote Link to comment Share on other sites More sharing options...
mscyn4u Posted July 30, 2003 Author Share Posted July 30, 2003 Hi Ry and thanks for sharing that information you know this is all new for me and that is something I have not heard. He was previously treated at Mayo I am going to dig out his records and make a call to see if they would talk to his current oncologist/surgeon/or lung specialist. Today we found out his white blood cell count is not good and his kidney is not functioning properly (he is not going, even after getting Lasix 2 times daily!)The infectious disease specialist but him on antibotics until the bacteria from the fluid drawn off his lungs yesterday shows something. I tell you every single day there is some other problem that arises!!! The oncologist knew he had had previous radiation why would they suggest surgery if they knew he might not heal properly. Is everything with Cancer a gamble that has to be taken to fight it??? Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 31, 2003 Share Posted July 31, 2003 I am sorry you are both having to go through such a difficult time. I really am. But my sympathies lie more with him than you. You CAN walk away from this for a time -even forever- if you chose to do so. He cannot. I would like to suggest that you check into therapy for yourself to assist you in finding a balance between your needs and his. And maybe it will also help you to deal with the anger you feel towards him for not being able to take care of you now. You've made reference more than once to his having not done a good job of taking care of you during your first marriage to one another; how this was supposed to be his time to make it up to you for failing you the first time around. Your anger over this being YOUR time to be taken care of by him, but instead you are having to take care of him...AGAIN... comes through loud and clear to me, and I'm only reading a few emails. What must HE sense coming from you? And what about his disappointment? He had to go through his first bout of cancer ALONE. And now he's dealing with the cancer recurrence, complications from the surgery, all of his feelings and yours, too. Look, I really DO know how hard it is to care for someone who is dealing with lung cancer and it's complications. I am empathetic towards anyone who is having to deal with this in the role of caregiver. I know how awful it can be to sit at the hospital, and be afraid to leave, not eat well, not get the rest and exercise you need to function well. Those things are affecting the way you view everything. So I hope you do find someone you can talk with who will help you to put things into proper pespective, to help you understand that it's okay for you to take the time to take care of you, and to help you lose the anger. It's a destructive force in both of your lives. Since I have lung cancer and I've had a few of these complications over the past 4 years I'm going to try to give you a little insight into what he may be feeling right now, with the hopes that it will help you to understand how hard it is on him right now. Most of what I've had is no where near as severe as what he is dealing with. Imagine that you close your mouth tightly, block up one nostril, tie a band tightly around your chest, then walk up and down a flight of stairs several times at a brisk pace. THIS is what it is like to breathe around a small to medium pleural effusion with a partially collapsed lobe of the lung. Except if you have a pleural effusion it also hurts. A lot. Think about what if feels like to have a big blister being rubbed by new shoes, only the blister is much larger and inside your chest and being rubbed raw every time you inhale or exhale. Chest tubes are painful....Imagine all of the above plus you have a hole cut into the your chest and a semi-rigid tube shoved up inside of you. Even with morphine one of these things is very uncomforable. If there is actual fluid filling the lung just imagine an entire glass full of water and not just a sip going down the wrong pipe...and not being able to cough it out or catch your breath. So if he doesn't feel like getting up and walking around try to understand it, and try to find another way to help motivate him to do so besides guilt and anger and fear. But only if his doctors tell him he should be trying to get up and move around. Ask his physicians what level of physical activity he should be engaged in. That's right ....what his physicians say is an appropriate level of activity and not what you think he should be doing. Different circumstances had me as the one in the bed fighting for my very life and trying to keep my head up while dealing with someone who made it perfectly clear on a daily basis how very angry he was that he had to deal with my illness on any level. It's hard to see the love for all the anger. And sometimes there isn't really any love at all. Fay A. Quote Link to comment Share on other sites More sharing options...
mscyn4u Posted July 31, 2003 Author Share Posted July 31, 2003 Well Faye, I have been around awhile and I know sometime people recieve messages based on their own personal experiences. If you read anger in my message it is not directed to my husband, it is directed to the disease called Cancer. Also, I have worked since I was 14 years old, so I have never relied on a man to take care of me. This was my husband's idea to give me the opportunity to be a homemaker, I have no problem working it is just now, he wants and needs me to be with him. I also want and need him to not give up!! Matter of fact today the psychiatrist and the infectious disease person told him there is no reason to lay down and feel sorry for yourself. He has been diagnosed with Adjustment Disorder, and it was explained to me that men deal with things differently than women. For him, his job represented his manhood, his ability to take care of his wife and his home, and he is depressed about not getting out of the hospital in the time frame they gave him in the beginning. I cry because I sit there and watch him sleep because he doesn't want to wake up and have that chest tube. He states he is in another place when he is sleeping somewhere without the chest tube. Now you can call it anger if you would like to I call it fighting to get my "Man" back from sinking into depression. Also the social worker and the oncologist told me I have to find balance to take care of me and him, because if I break under all the pressure who will be there for him. Our children are adults and our oldest son came in today and said to him Pops, if you gonna die, go ahead and die, because we have things to do! You know what my husband laughed!! Because he knows it was said to shock him back to reality and you know what, he got up shaved, cleaned himself up and walked outside with us for over an hour. My son carried the chest tube and we rode the elevator down and went out the hospital for some sunshine. Everyone deals with their situation to the best of their ability, I appreciate some of the things you said, however, I think you were completely off track when you deduced I was angry at him for being sick. Maybe that was your experience and I am sorry it happened to you that way, but I would not have remarried my husband if I did not love him. We never stopped loving each other, he had to overcome some really bad self destructive behaviors and go through therapy to stay straight and focused, so he could get back to the family he loved, he is a good loving husband and father when he is in his regular frame of mind. So I won't sit back and accept him wallowing in self pity and take away from our time together after we have been apart for 15 years. If that seems selfish to you so be it... I am fighting for us and our children..... As Ever, Cynthia Quote Link to comment Share on other sites More sharing options...
karen335 Posted July 31, 2003 Share Posted July 31, 2003 Mscyn4u, I just wanted to share some information with you. I too had chemo/radiation at the same time. I had 38 radiation and 8 chemo treatments. My onc, thought that if I had this treatment first, it would shrink the tumor and surgery would be an option. The chemo that was given to me was taxol/carboplatin. This procedure did shrink the tumor to 8cm, (originally was 17cm) it was in the center of my chest. After all my treatments, the radiation onc said no you can't have surgery. I then decided well I need a 2nd opinion. I went to onc at UCLA, he said depends on amt of radiation I received, if it was 45cym or under, them yes surgery was an option. If it was higher, which it was 69cym I could not have surgery, because I would not heal. This information came from the Thorasic surgeon at UCLA. What chemo did your husband have? What really upsets me is that all of these doctors, my onc, the onc radiologist, pulmonary doctor did not converse. They made me unable to have the surgery. Doctors don't seem to care anymore. All they seem to be looking at is the almighty dollar. The first thing they want to know is, who is your insurance carrier. It is so maddening. Whatever happened to patient care as being #1. I know your husband will get through this. I will keep you and your husband in my prayers. God Bless and gentle hugs Karen ************* Dx 3-03, 3a-b??? NSCLC taxol/carbo wkly, 38 radiation, currently on taxol/carbo every 3 weeks, started 7/23/03 Quote Link to comment Share on other sites More sharing options...
mscyn4u Posted July 31, 2003 Author Share Posted July 31, 2003 Hi Karen, I just went through his old medical records and from what I can read, the chemo was Paclitaxel and Carboplatin, and one cycle of Etoposide and Carboplatin at the start of his radiation and had 35 radiation treatments. I don't know how identify what the strength of the radiation was in this records, what would it look like.. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 31, 2003 Share Posted July 31, 2003 Cynthia, I am very relieved to be corrected. I'm glad that you made the distinction between being angry with him and being angry with the situation. Because I didn't pick up on you being angry at the situation. What I picked up on was what seemed to me to be strong anger towards him and how hard this has been on you. I know it is, but having been on both sides of the lung cancer equation (caregiver and survivor)and recognising that being a good caregiver is the harder of the two positions, I can tell you that as a survivor I would trade places with you, the caregiver, any day of the week. I made my comments based on the things you stated, and my interpretation was colored by my own experiences...as both a caregiver and survivor. I'm telling you straight, Cynthia, that the chest tube and all of that fluid is a d#$n good reason for him to feel like he does not want to get up and walk around. You just can't imagine what it feels like. But with all of the other problems you mentioned in your first and second posts there was some reasonable question in my mind (as a person who has lived through post thoracic surgery complications) as to if he COULD be expected to be up and walking around, and if so who was expecting him to do so, because based on the information you provided, and my own personal experiences I didn't think any medical professional would have expected it. (my experiences with surgery, pleural effusion, fluid on the lung and the chest tubes has been such that I'm the one saying "get me out of this bed" and the docs are the ones saying "no moving about until the chest tubes are out." So I will apologize to you for my misunderstanding. In future I will try to remember to ask for clarification before jumping to what may be an erroneous conclusion. And I really do wish all of you well. Just wish my wishing would make it so for everyone. Fay A. (Just Fay, no '' e '' at the end) Quote Link to comment Share on other sites More sharing options...
Guest Ry not logged in Posted July 31, 2003 Share Posted July 31, 2003 Karen you are so right about the different specialties not speaking. My husband came very close to getting the maximum dose prior to being reevaluated because they never told the radiation oncologist they were going to stop and consider surgery. Luckily we said something to him about going for a 2nd opinion on surgery, you should have seen his face(looked like this ). And Cynthia, maybe you should just call Mayo and ask them to look it up for you and tell you the rads he received. Quote Link to comment Share on other sites More sharing options...
karen335 Posted July 31, 2003 Share Posted July 31, 2003 Cynthia, My suggestion as well as Ry's, is to call the radiation onc and ask them what the rads were that your husband received. They will be able to give this info to you. The reason I asked which chemo your husband received is because some of the chemo's are more toxic that others. It happens to be that taxol/carboplatin together with radiation is very toxic and especially if the rads are high during radiation. According to the surgeon, it is difficult to heal properly and quickly with this type of chemo. It is an individual situation. It is my undersatanding that the chemo and radiation is very effective and works as well as the surgery. The tumor was in my right lung was encasing the bronc tubes and was quite large (17cm). Hope this helps. Praying for a cure for all of us. God Bless Karen Quote Link to comment Share on other sites More sharing options...
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