mscyn4u

I was so upset today I posted my feelings under another post. This is to say I came today to visit the Wall of Memory and was devasted my husbands picture and story was no longer there. It has been too hard for me to visit the site since I lost him as you can read in my other post. But this is one place I thought his picture would remain. It is not like I could have missed him, he was the only African American posted, which I also thought would give others some incentive to post their loved ones. What a way to start my Memorial Day in tears, I am so saddened by this situation. I wish I hadn't logged in today at all....

This is Memorial Day and I lost my husband (Rob) on September 29, 2003, he was diagnosed in May 2003 and I joined this site in Jun 2003, two weeks before he went into the hospital for surgery, of which he never recovered. I have stayed away because of the pain I feel when I read of others going through the pain and quandries caused by this disease of lung cancer. I signed on today to just look at his picture on the Wall of Memory and was devastated that it was not there. That caused me more grief, I thought I posted his picture somewhere it would stay until the site went away. He was the only African American posted so it would not be that I could have overlooked the picture. I am so sad it is like someone has "erased" his memory without even bothering to contact me to tell me it would be deleted. I have problems with this every where you go it seems something else has to be done to remove your loved one, bank accounts, car titles, insurance policies, etc. etc. It hurts everytime I have to take his name off something, it feels like society is eliminating him over and over. I know this might seem ridiculous to others but to the person that has lost a spouse I am sure you understand what I mean. I came to the site on Memorial Day, to visit my husbands picture on the Wall of Memory. I am signing off in tears today because he is not there. I cannot believe of all places he would be removed!!

You should share the information with your wife. Every experience is different, but from speaking as a wife, she should know everything from the beginning. You wil need her for support and don't allow that manly pride to take over and deprive her of one minute of being by your side if that is her choice. Ask yourself if you would want her to keep this sort of information from you?? Time is too short to be "holding back" information while awaiting the results. We will all be praying the outcome is a benign. Keep us posted. As Ever,

I thank you that have posted and though it doesn't relieve the pain and sadness, it is good to know people care. Candy, you are truly in the exact same place I am in at this moment and I feel your pain also. Let's continue in our faith and let the "friends" we have here keep supporting one another, as we all deal with the pain caused by lung cancer. I was oblivious to it before it knocked on our door this year, even though my husband told me about his first bout with it while we were apart. He told me he was cured and I took it for face value and didn't know about the possiblity of recurrences, until it hit us in April of this year. He must have blocked it all out himself or was in denial about it recurring. Or just didn't want to spoil our happiness from being reunited. Now I know and I hope my knowledge can allow me to be a support to others, after I work through this devasting grief. I ask that I be kept in your prayers and I will do the same for you all, thanks again. Cynthia

I have not posted for almost 2 months some of you will remember I joined the boards in June 2003. My husband was having a lobectomy on his left lung. He stayed in the hospital from June 26 to August 13 battling continuing pleural effusions, would not stop draining from the chest tubes, he then developed a staph infection called empyema. He lost 60 lbs and finally when the chest tubes did come out he had no body weight, was not eating. Rob was sent home on IV antibiotics, he stayed home for 2 and 1/2 weeks, and was taking over 12 different medications, they then decided he had to go back into the hospital because both lungs were showing pockets of loculated fluids and they said he may have to have another surgery (decortication), but his body had to be built up or he would not survive the surgery. He was scheduled to go into the hospital on a Monday to start the hyperal (IV feeding) but we were called in on a Saturday (9/6/03) to take him to the ER because a lab report had been called in to the doctor and his blood sugar was 520, he was now diabetic!!!! So he had to be admitted that Saturday, that Sunday his oxygen liters went from 2 (which he came home on) to 10, by Monday, he was decompensating down to 69 and had to be put in ICU, he cried about having to come back to the hospital and did not want to go to ICU, he said he felt he would not come out of the hospital. Well he must have known something I didn't know, it turns out he was right. After going into ICU, it went down hill in about 3 weeks, pneumonia, infection spreading, he ended up with 5 chest tubes, even after getting 3000 calories a day, intravenously, his body would not hold on to the nutrients. He had to have the surgery (9/19) and for 2 days was only on 5 liters of oxygen then by the Monday night he was up to 15 liters and by Tues on the bi-pap (forced oxygen) system. The same Tues (9/23) morning I had to make a decision to put him on life support. The right lung starting having all sorts of drainage, pneumothoraxes, infection, etc. That is where he had the cancer in 1997 - 1998 that was supposedly cured. My husband's face started becoming like a skelton and his other organs started failing and by Friday I was asking myself if I made the right decision by putting him on life support, then that Friday afternoon, he had a mild heart attack and his heart had been the strongest thing he had going for him, even though he would have bouts of atrial fibrillation from time to time during his hospital stay. After the heart attack I told the doctors I didn't want another tube put in him, no more chest tubes, as he had tubes everywhere!! They finally admitted he could not survive this, that no one could in his body condition. They changed to feeding him via stomach tube and his body still would not absorb the nutrients, and he started spitting up blood from the stomach. So I contacted his mother and sisters (9/24) and told them to get here from Indiana. After the conference with the lung specialist and the surgeon we removed the life support system Monday Sept 29 about 11:15 am.. They thought he would go right away, because his lungs were at the maximum amount on the ventilator, but he hung in there until 4:26 p.m when he took his last breath. I am heartbroken, devasted, partially in denial about this all, they assured us when they found the new spot on his left lung, it was early stages and he was healthy and young and would be just fine and out the hospital in 7 - 10 days, after the lobectomy. Well he never got better and if we had of known this would have been the outcome, we would have taken our chances with the cancer. I cannot believe my husband is gone, I cannot believe he spent all those months in the hospital and they could not make him better. They all said at the end they believe there must have been some cancer in the right lung where he previously had Stage 3a cancer that was treated by radiation and chemo that just had not been found, cause they were testing all the fluids. He had almost 8 thorancentesis on that lung and ended up with 3 chest tubes on the right side because the fluid kept popping up in different spots. They also said the radiation had altered some many things inside both lungs and lymphatic system that they didn't find until they went in to to the surgery. This was not suppose to be the end of our story after reuniting after being apart all those years, part of me feels blessed that we got back together and were so so happy, then part of me feels cheated!!! I am so torn by feelings I don't know what to do. I sometimes feel I must get to the hospital because I spent (with the exeception of one weekend) everyday at that hospital with him since June 26 through August 13 and then Sept 6 through Sept 29, when he made his transition from this earthly life. I feel like he is at the hospital even though we had funeral services on Saturday Oct. 4. I have his cremains in my bedroom against the wall on his side of the bed. I feel like I am in a long dream and I will wake up and say, "boo" (that's what I called him) I just had a dream that was so sad and frightening. But he is not here and I won't have another conversation like that with him when I awake. This is the most painful thing I have endured since my mother died when I was a 13 year old girl. I want to scream sometimes why??? why??? why??? I know I have written a long drawn out saga, but I need to talk to people that know how I feel, that can assure me that my feelings are normal. I don't know how to go on with out my husband, it was busy last week, preparing for the services and now I am home with so many mixed feelings. Please someone tell me how to get through this........ "

I am soooo very sorry your family is going through this. Mom's are the backbones of the family and I know it is emotionally hard on everyone thinking she will not be with you all much longer. Pray for strength, I lost my mother at the age of 13 and you never really get over it, you just learn to live with the sadness. I am now 50 and the sadness is still there, when I hear stories of someone losing their mother, I can truly say I can feel their pain. Keep praying and believing for a miracle and be as strong as you can for your father, without denying your own emotions. They have been blessed for so many years together, I know he cannot even concieve her not being there with him for many more. I pray he gets the God kind of peace in the midst of this turmoil. My prayers are with you .....

The doctors let him come home Wednesday evening after he was given his evening antibiotics and waited for a portable O2 tank to transport him home with. I left another message in the General category, that applies to our homecoming and my thanks to you all for your support. Please read it there as I have to get me some shut eye as I did not get much last night. Blessings and thanks to you all for your words of encouragement, information, and overall support. May God continue to hear your prayers as we pray for ourselves and each other. As Ever, Cynthia

Thanks for everyone's support, last night there was a mix-up he had antibiotics to be given at 10 p.m and at 10 there was no nurse and I called her and she stated she was waiting on me to call her. Then I asked if she had the antibiotics and she told me they were delivered to our apartment. NOT!!! I had my daughter here all afternoon waiting for the deliveries, for the Oxygen equipment and the meds. Well the supervisor for the Home Health company contacted the courier and they told them they left it at my apartment and it was signed by someone that doesn't match a name in my apartment. After late night calls, they contacted the apartment manager via emergency messaging and the courier left it at the office. They did not try to come into the gate to leave it. The manager had to get up out her bed and go open the office and get it here to us around 11:30 pm, well the nurse showed up at 12:00 by the time she finished hanging it it was 12:45 a.m and we (she and I) had to do initial paperwork, until 3:45 a.m, she then went out to her car and slept (I had invited her to the sofa, but she said that was ok) to give him his 6:00 dose at 5 a.m, so I have had about 3 hours sleep today. He also frightened me a bit as he had a fever of 100.7 and the infectious disease doctor and the surgeon warned us that if he gets another high fever he will have to have surgery to remove the tissue of the infected area. But this morning it was down to 99.7. Please pray the surgery does not have to happen, my husband has lost about 50 lbs and is sooo very fragile He did eat a good breakfast at home this morning and enjoyed being able to just lay down beside me for a few hours. We are taking things one day at a time and believing he will rebound like Wolverwine (his favorite character in X-Men) Again thanks for your words of encouragement and support, may your battles be fought with God's strength and healing powers also... ((((((((((((((hugs to all))))))))))) Cynthia

My husband battles after his lobectomy on Jun 26 hopefully are coming to an end. It sounds like he will be discharged tomorrow, if the fluid levels in his lungs stay at the current level. He had to have a PIC line put in yesterday (due to the bacterial infection he contracted from having a chest tube soooo long) so he can receive long term antibiotics. They also have to reassess his need for oxygen. The kidney specialist has put him on a restricted fluid regimen, because his body just keep producing or hanging on to fluid, which why I believe he has problems breathing. Then yesterday on of the doctors said he has some emphysema, how does one have some emphysema??? along with lung cancer?? The bacterial infection took him for a loop, I thought he was dying from cancer as he was wasting away. He has lost over 50 pounds, they want him to eat over 2400 calories a day. I am sure his chemo follow-up will be put off for awhile. The home health nurses will be taking care of him at home for awhile. However they infectious disease doctor and the surgeon are stressing if he gets a fever, or more fluid builds up where the bacterial infection is located, he will have to have another surgery to remove the surrounding tissue. Please pray this doesn't happen. Does anyone know of any other lung cancer patient that developed a bacterial infection???? I believe he will heal better being home at least mentally he will get better and I will cook all the fattening things I can to get weight back on him. When you are stronger mentally, you get better physically. This has been a nightmare for the both of us I am sooooo thankful it has ended and we can get on with our war against this awful disease!!!! Thanks for your prayers, however, don't stop them, we all need them constantly.

My husband battles after his lobectomy on Jun 26 hopefully are coming to an end. It sounds like he will be discharged tomorrow, if the fluid levels in his lungs stay at the current level. He had to have a PIC line put in yesterday (due to the bacterial infection he contracted from having a chest tube soooo long) so he can receive long term antibiotics. They also have to reassess his need for oxygen. The kidney specialist has put him on a restricted fluid regimen, because his body just keep producing or hanging on to fluid, which why I believe he has problems breathing. Then yesterday on of the doctors said he has some emphysema, how does one have some emphysema??? along with lung cancer?? The bacterial infection took him for a loop, I thought he was dying from cancer as he was wasting away. He has lost over 50 pounds, they want him to eat over 2400 calories a day. I am sure his chemo follow-up will be put off for awhile. The home health nurses will be taking care of him at home for awhile. However they infectious disease doctor and the surgeon are stressing if he gets a fever, or more fluid builds up where the bacterial infection is located, he will have to have another surgery to remove the surrounding tissue. Please pray this doesn't happen. Does anyone know of any other lung cancer patient that developed a bacterial infection???? I believe he will heal better being home at least mentally he will get better and I will cook all the fattening things I can to get weight back on him. When you are stronger mentally, you get better physically. This has been a nightmare for the both of us I am sooooo thankful it has ended and we can get on with our war against this awful disease!!!! Thanks for your prayers, however, don't stop them, we all need them constantly.

Hello Tami If you read some of my post about my husband's (Rob) surgery you will see he has some lymphatic issues going on. He had a lobectomy on June 26, 2003 as of today Aug 12, he is still hospitalized. They have never said lymphedema was the problem but they have said his lymphatic system has been anatomically altered, from the surgeries and previous radiation. He had several lymph nodes removed in April 2003 for examination (they were benign), but 6 days later he ended up in the hospital with congestive heart failure, because his body had swelled up with fluid. They had to drain fluid off one of his lung after the lymph nodes were taken. He had the left lobectomy in Jun and he would not draining!!! One chest tube came out around 2 and 1/2 weeks after the surgery and the second didn't come out until Aug 3, 2003 and that happen by accident . They were still concerned about the fluid building back up but didn't reinsert it, because of another condition he developed. He has had 2 thorancentisis since the Jun 26, surgery because the rightr lung kept filling up with fluid. He then developed a bacterial condition from the chest tube being in so long, it is called Empyima. They have had him on all kinds of direutics and he developed kidney failure from the direutics, it has been one setback after another. Now they say he will always have a problem with fluid retention. No they haven't called it lymphedema technically, but it sure looks like it to me. Everytime they removed some lymph nodes his body reacts with by not knowing how to absorb the fluids it produces. Now with extra tissue missing from the lung surgery, there is less tissue to absorp the fluid, so the fluid builds up in his lungs, his feet, legs and ankles.. It sounds like you might have some fluid retention also, let the doctors know.. Be blessed and believe you will be the victor over this disease... mscyn4u

Carleen, every person on this board with a mate affected by this disease that read your post, I believe feels your heartache. It is a lot we are all going through. I know how you can sometimes pull away from posting, due to time contstraints, exhaustion, and sometimes just feeling like, it is too damn much to type. Then there are times like you just did you HAVE to get it all out so don't feel bad about a long post. We are here for one another. The feelings are overwhelming, they consume you daily. I am not working and sometimes I wish I was to take my mind off, then again I have to say it is good I am not because I could not take off when he calls from the hospital and needs me. You and your husband are cared for and will be in all our prayers, just take it one day at a time and count the blessings you do have daily, like each other, food, shelter, etc., etc. Because in the long run the "stuff" we have seems so trivial when it comes to the big issue which is our ability to get up and still be alive. We are all living to die, unfortunately an illness brings the reality smack in our faces. So love each other like there is no tomorrow DAILY!!!! STAY STRONG AND WHEN YOU CAN'T FOR AWHILE, IT IS OK TO LET IT OUT!!! IN ANGER, TEARS, SHOUTING MATCHES, WHATEVER, CAUSE THE LOVE YOU HAVE FOR EACH OTHER WILL REGENERATE YOUR STRENGTH AFTER THE LOWS COME AND GO. (((((((((((((((((((hugs)))))))))))))))))))))000

Thanks to those that have shared thoughts, concerns, and prayers, the lung doctors are now saying he may still need more surgery to scrape the tissue and remove the abcess. The lung doctor says he wants to watch the drainage over the weekend. I hope they can concur on something soon. Everything I have read about this empyima, is that it can be fatal, especially to people with lung cancer or low immune systems. All this is wearing me out, I can only imagine what my husband must be feeling.

Hello Everyone, This story started June 26, 2003 for a lobectomy of the left lung and my husband was healthy, muscular and no outwardly signs of this early detected lung cancer. Today he is down 55 pounds!!! and is weak and this week end they found he had an infection in the left lung!!!. He had to have another tube (smaller drain system) inserted yesterday via a CT Scan procedure done by the radiologist to drain this abscess in the lung. The condition is called empyima and can be a deadly bacteria. The infectious disease doctor that they called in last week had been treating him for an unknown infection because he had a fever last Monday that spiked at 104!! Well they siphoned off some of the fluid from the Pleura Vac on the left lung Saturday that was producing non-stop fluid and lo and behold they found the staph infection. Today he has fluid on the right lung and some still on the left lung, however the big chest tube was dislodged on Sunday by a transport person that handled it wrong (which could have been a fatal error) but God was looking out. She came to take him down for an ultrasound and he told her he would handle the chest tube, and she say oh no I have handled these before and the woman, put the chest tube over the arm of the wheel chair and Rob being medicated and sleepy sat in the chair under her guidance and it was pulled!!! Then the dayuum Utlrasound Tech, made him lie on the left side so she could do the ultra sound after he told her he was in pain from the pull of the chest tube and anyway, he was not suppose to lay on the left side. Well she said just lay on it as much as you can, so when he was returned to his room, the nurse looked at the chest tube box and screamed there is blood in there, it was bright red!! She went to call the doctor after getting on the transport person, because Rob had told her he had a very "rough" experience going for the ultrasound. While the nurse went to call the doctor, Rob went into a bad coughing spell and when he opened his eyes, the chest tube was laying on the floor, came out the chest, bandage and everything!!! The nurse really freaked and put him in the bed in a sitting position, made sure the petroleum seal was over the hole, and packed the side with towels. They doctors ordered a stat X-ray and the lungs wasn't filled up with enough fluid to warrant reinsertion. So I say God all knowing about the infection and another chest tube coming, decided this man needs a break from this chest tube. Remember it was the one that never would stop draining enough to pull it. Later that day (sunday) we got early reports that there was an infection in the lung. The new chest tube is a small catheter size that is right over the area of his heart, he was awake when they pulled out the abscess and he said it was thick and yellow!! That is probably what has been slowly taking my husband down, his oncologist was on vacation for 2 and 1/2 weeks and came in yesterday and was absolutely shocked about the amount of weight and muscle my husband had loss. He said there is no evidence the cancer was back and he believes my husbands lymphatic system has been altered somewhat by the radiation, which is why the fluid build up keeps happening. But he has ordered nutritionist in to help build my husband back up and he ordered something called Megace for his appetite. The oncologist also said if these strong antibiotics don't clear up this infection, the next step is surgery to remove the infected tissue, and if my husband has to have surgery, he would not make it through with the state his body is in now. This has been a hospital stay from HELL, all my husbands organs have had some sort of problem since he had the lobectomy. Hhis liver enzymes were up, his kidney was going into failure from so much lasix, his heart was going in and out of atrial fibilllation, they found he has Hepatis C exposure, which he said was discovered in 98, but it was not treated, his white cell count was up to 28, and should be around 11!! The GI doctor said he is not a candidate for treatment of the Hepatitis C, because of all the other things going on with his body. But I guess the good news out of all this is the cancer is not back and not showing up on any of the cytology reports of all the fluids. I was scared because all his symptoms indicated cancer, the ones like, nausea, weight loss, loss of appetite, fatigue, etc. I just don't know why with all these specialists, no one thought to look for this condition, because everything I have read about it on the internet, it happens to people that have had chest surgery or wounds to the chest!! They were so busy looking for cancer they overlooked this issue. I kept crying and telling them my husband is slowly slipping away from me!! They all kept saying this is a complex case and were all befuddled, now I truly understand the term "PRACTICE OF MEDICINE" If anyone has experience with this condition called empyima, please let me know how it was corrected and if it has to be treated for weeks?? aND MOST IMPORTANTLY PLEASE KEEP MY HUSBAND IN YOUR PRAYERS. Also thank you all that allow me to post this mini-drama's. I pray for healthy loved ones and the care takers for all that are here. May God continue to bless us all. Sincerely Mscyn4u

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..

Carlton, my husband had that situation last week and was put on Heparin, to thin the blood. I gathered if it is to thick it can "clot" up more, I believe, I just know they treated him with Heparin and had to do draw blood every so many hours checking the PT rate, which has something to do with the clotting ability.. They want it thin but not to thinned out.. I hope that helps...

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

Great post!!! Good to go out and celebrate glad he wa up to it. The 000 boats are a great outing for me. There is none here in the Atlanta area, but when I go home to the metro Chicago area I always go to one. In Florida where I lived for 15 years and left last year, I used to go frequently (at least 2x per month). Got on the bus with the other little ole ladies my grandaughter use to say, Grandma, there is the bus with your friends !! It is just good to here someone beating the odds and able to celebrate it. Nice words of encouragement... ((((((((((((hugs to you both))))))))))))) Cynthia

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???

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!!!!!

Kudos to you, that is great!!!! Congratulations and may you have continued good news..

Hi Everyone and especially Marci good news on your surgery and your being home already. May you continue healing at such a rapid rate. I came to this board in May and my husbands surgery was done June 26, he stayed in the hospital for 21 days came home last Thursday with one chest tube still draining, one was removed the beginning of the 3rd week in the hospital. He was home for less than 24 hours and I had to take him back to emergency as his feet were swelling and he was out of breath . Turns out he went into congestive heart failure and he was readmitted to the hospital on Friday and is still there. Yesterday they did a heart catheterization(sp?) to check for coronary artery disease and he did not have any. Thank God!! on top of the lung cancer he did not need another major health issue. He does have atrial fibrillation which causes the heart to beat rapidly and irregularly. He had a lobectomy of the left lung and was originally diagnosed at Stage 1, but after the surgery and examination of the lymph nodes was diagnosed at Stage 11a, so he has to follow-up with some chemo later. Yesterday we both were in tears about different things. I think I am just burnt out from being at the hospital everyday since June 26 and I have lost 3 family members in a 30 day period. He was feeling depressed and thinking there was something wrong that the doctors were not telling him. He felt he was not healing up because there is probably more cancer, (even though they have drained some of the fluid off the right lung and it was negative for cancer cells). Finally today the fluid is down to 150cc of output and they say as soon as it is under 100 they can remove it. They are kinda saying because he previously had chemo and radiation his body chemistry has been altered and it will heal at its own pace. Today the RN from the Heart Smart classes came in to talk to us and told him, his congestive heart failure is related to the previous chemo also and he will be subjected to it during periods like this, but he still needs to watch for the signs when it is happening and get to the doctor right away. They are going to send us to a class for diet and exercise information in August, but she also told him to count his blessings and not be focused on that chest tube container, because he is still able to walk around and has a lot to be thankful for. I was soooo glad she talked to him, because his conversation yesterday was so negative> I was prepared to come in there today and tell him, I cannot fight this disease for him, he has to fight it himself and if he keeps sleeping because he is depressed, he is not going to win the battle. I went to the hospital for 5 hours today and I am not going back, it is wearing me out. I have not had one complete day at home since June 21st. No wonder I was a blubbering mess yesterday!!! Our oncologist is great, however he is on vacation for 2 weeks, he doesnt know my husband was readmitted yet. Does anyone know how long they wait after the surgery to start chemo, my husband said if they start it too soon he won't heal up from the surgery, so they have to wait until he is completely healed?? Is that true??? Can't cancer cells be growing now?? Or won't it matter if they are, cause the chemo will get rid of them??? He has had a couple of doctors saying, well you have been dealing with this cancer since 1997 and my husband is saying no I haven't that cancer was cured in 1998. We were not together then and I am now believing that he doesnt connect the two at all. Is that a form of denial. This is a whole new primary does that mean, he could get recurrences of this primary and is there a possibility that he could get a recurrence of the cancer from 1997-1998 in the right lung?? Will chemo wipe out that possibility if he gets it now for this cancer?? Is chemo just specific for certain areas of the body or does it work for the total body??? I know this is a book about now but I need to get this all out. This whole situation has been overwhelming, it has set us back financially, I want to go to work, somewhere, now but I will need to be here for him. He was suppose to be back to work 4 - 6 weeks after June 26, now it will be 4 - 6 weeks after he is discharged, so that sets us back more. Plus I don't know if he will be able to work while he is getting the chemo?? I am 50 and he is 51, no where near the age to get social security and the 50% he is getting from his job, is not nearly enough. How have some of you other couples dealt with this situation, if you don't have anyone else that can be home to help your mate out, what did you do for finances?? I am a hair stylist but he allowed me to be a homemaker, this time because when we were married before, he didn't provide for the family like he should have. He was making it up this time by allowing me to stay home, as I have worked since I was 14 years old. Now I feel I must get back in the workforce or we will go under fast, but I am also torn because he needs me to?? Please any suggestions out there?? Well I guess I have "vented" enough. I wish I could get on line more to welcome newcomers and say hi to all that posts but time doesn't allow it. But believe me when I do get a chance to sit at this computer I do spend a lot of time browsing through all the post and praying for those here dealing with this god awful disease. Please continue to pray for us and that this hospital stay ends soon, and one last thing, will the HMO, we have cut us off if this bill ends up way too much???? Geez, I don't even want to think of that happening!!!!! I am going to change that thought right now.. Take care everyone and I would love to hear from some of you... As Ever Cynthia

I am speechless the loss of any family member is tough, but your parents I know it is extremely hard. My prayers are with you. I know if I was going through what your family is going through I know my strength would have to come from a higher source. Stay strong for him Prayers to you .

Hi Betty I haven't been a part of this group long but I believe it is all "fate" that we have a place to come together for support. Believe me we all have our good and bad days dealing with our loved ones who are battling this dreadful disease. I don't get to post much because my husband had a lobectomy and is breaking records with his hospital stay, it is now day 25 not counting the one day he was discharged 7/17/03, but I had to bring him back to ER the next day due to breathing problems and fluid build up in his legs and feet. But when I do get a few minutes home from the hospital I try to check in and post if I need to do an update and/or read others stories for some help on how to deal with it all. You will be added to many prayers, stay strong and believe and steal time for you when possible, is the best advice I can give. As Ever, Cynthia

Hi all to those that are aware my husband had a lobectomy on June 26, 2003. He stayed in the hospital 22 days and left Thursday 7/17/03 evening with one chest tube still in him. Well I had to take him back on Friday afternoon and stayed in ER from 1 p.m. - 9:45 p.m. He was readmitted much earlier but we had to wait on a bed. He couldn't sleep at home at all that night, he was short of breath (had been w/o oxygen for 1 week at the hospital) and he started swelling in his legs and feet. The chest tube was filled at the top section coming from his chest, however it would not drain properly into the leg bag they sent him home with. The surgeon came to ER and readmitted him and ordered some test, found out his blood was too thick and called in the cardiologist and lung specialist again, the first diagnosis was possibly pneumonia because there was fluid on both lungs, the left for this surgery and there was fluid around his heart and left lung. The doctors have no answer why his chest tube will not stop draining, they feel the previous chemo and radiation may have changed him internally and the scar tissue may not be absorping the plural fluid as usual. On top of all this I lost a cousin on June 18 from liver cancer at the age of 47, lost a uncle here in Atl on July 2, from emphysma and on Thursday, my stepsister died in my hometown of North Chicago, IL. This has been a helluva month, 3 close family members dying in 30 days!! while going through almost a month of this hospital stay with my husband. They are now giving him Heparin and believe the Atrial Fibrillation problem has worsened since his cancer surgery. They want to do a heart catheter next week to look for blockage. They also have vowed he will stay in the hospital this time until the remaining chest tube is removed. I believed he should have come home with some oxygen, but I dont' know if it would have helped with the swelling. I know he could not walk hardly 10ft without being short of breath, but he had done well walking around the hospital for 1 week without oxygen, and his level was about 98 when he left the hospital (w/o any exertion), but when I checked him in to the ER it was down to 84!! Has anyone experienced anything like this with such a long length of time for a chest tube to stop draining?? And will his ability to move around without being short of breath continue forever?? The fluids are testing negative for cancer cells, cause there was some concern another tumor may have developed because of the fluid on both lungs. They are pushing lasix also now by IV and it has taken the swelling off his legs and feet since last night, I think they should have sent him home with a prescription for lasix. I believe CIGNA was pushing for him to be moved out the hospital but he is right back there. I am dealing with so much right now. We expected approx 6 - 8 weeks before he would be out and healed up and back to work and now that isn't going to happen. I cannot seek employment cause he wants me at the hospital daily for over 9 hours and he will need me home with him when he comes home. Our finances are shot, he is only getting 50% of his income from his employer for disability. I want him to heal up and I know time is the only thing that will be the key. I truly count our blessings with the other deaths in the family, but I am so puzzled all this. I am finding more why they say the practice of medicine, cause out of all the specialists no one can explain why Rob's body is not absorbing the fluid and producing the extra fluid. I am not a smoker and everytime I see someone in front of the hospital smoking cigarettes I have to fight to tell them they should put it out!! This lung cancer experience is not one I would like to see anyone go through. I know many here have been through many years of it and probably believe I am whining after a couple of months. I just need to let it out before it all eats away at me. I just want some help in understanding it all and knowing if I should feel guilty if I just don't go to the hospital for one entire day?? I am beginning to feel like I am part of the staff at the hospital, and I probably know all the nurses on the second floor. Please prayer for our situation and healing for my husband. Bless you all, Cynthia