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..