mscyn4u Posted October 10, 2003 Share Posted October 10, 2003 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........ " Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 10, 2003 Share Posted October 10, 2003 I am so sorry to hear you lost your husband to this terrible disease. I am glad you came here and let your thoughts and emotions flow. You need to do that and get the support you will get here. At the point where we are (one year from diagnosis), I would gladly take 6 years, but I know the loss is heavy no matter when it comes. You can get through this (I have lost both parents, sister, brother and mother-in-law) by leaning on your good friends, both there and here. That is what we are here for, to support each other through our journey trials. Please stick with us and let us know how we can support you, and vent all you want. We do understand. Grace. Don Quote Link to comment Share on other sites More sharing options...
hersheydaley Posted October 10, 2003 Share Posted October 10, 2003 Hello, I am so sorry for your loss. I know exactly how you feel when you say you should still be going to the hospital even though they are gone. My dad passed away in June and for everyday before that it was like my whole world revolved around getting him better. We took him for all Chemo and radiation,all the doctors appt. and just sat with him every day for the past four months.And when it was all over I just felt helpless and could not get the strength to do anything anymore. I didn't even feel like leaving my house at times because I knew it wasn't going to the hospital to see my dad and that makes me very upset. They say time heals all wounds. well I don't see it coming my way. I cry more today then I did when we had the funeral and I didn't think that was possible. Anyway I just wanted to say how sorry I am and you are not alone. Donna Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 10, 2003 Share Posted October 10, 2003 I am so saddened and sorry for your loss. If there is anything we can do to help, please let us know. This is just awful and I pray for some comfort for you. Peg Quote Link to comment Share on other sites More sharing options...
Debaroo Posted October 10, 2003 Share Posted October 10, 2003 I am also so very sorry for your loosing your husband-I hope that coming here is of some help, somehow. We are here. Deb Quote Link to comment Share on other sites More sharing options...
Tiny Posted October 10, 2003 Share Posted October 10, 2003 Your story of Rob's and your journey this this devastating cancer is heart rending. I'm so sorry for you and can only offer my condolences. I pray you find some help to see you through your inconsolable grief. Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 10, 2003 Share Posted October 10, 2003 I am so sorry you have had such a difficult journey and have lost Rob. He was so fortunate to have had you take the journey with him . I pray that you find peace and comfort. Donna G Quote Link to comment Share on other sites More sharing options...
cathy Posted October 10, 2003 Share Posted October 10, 2003 I am soo sorry for your loss. I lost my precious dad 6 weeks ago. My mom is not doing very well either. Its so hard when the love of your life isnt with you anymore. My dads story is similiar to your husbands. The only difference my dad told me numerous times, no respirator, so we didnt have to make that decision. He had the by-pap also and to me that was a nightmare in itself. I think its the suffering that our loved ones had to endure(physical and emotional) that haunts us. Its so hard to get those images out of our thoughts. I just wanted you to know you are not alone, and if your feelings are not "normal" then I am not either. Quote Link to comment Share on other sites More sharing options...
Candy Posted October 10, 2003 Share Posted October 10, 2003 I am so sorry - what a devestating story, one that many of us share at least in part. My husband lost his battle the day before yours. I also stayed in the hospital day and night and when I left the outside world seemed surreal. Hugh requested a DNR when he first entered the hospital with pneumonia. I was devestated but accepted his decision and in a way I think it made it easier for me as I didn't have to deal with decisions of life support. His blood sugar also sky rocketed and he was on insulin. The doctor told us that sometimes the cancer (at least SCLC) will do that as well as the medications they had to give him to treat the pneumonia. His funeral was October 3 and I have his cremains at home. We had agreed to have our ashes mixed together before scattering them. I feel like you do - WHY? and HOW do I get through each day never mind the rest of my life. I only know that somehow we will do it. I told my children that it HAS to get better because I can't go on each day feeling this bad. I remember my mother who at 42 moved ahead to live a fulfilling life without my Dad who died suddenly of a heart attack and I tell myself that I can do this though I do have trouble convincing myself its true. When people tell me to take one day at a time I tell them it seems to be more like 1 minute at a time. When Hugh was sick I took one day at a time now I can't think past the absolute minute I am in. I have faith that we will get through this, I just can't imagine how. Quote Link to comment Share on other sites More sharing options...
mscyn4u Posted October 10, 2003 Author Share Posted October 10, 2003 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 Quote Link to comment Share on other sites More sharing options...
Ann Posted October 10, 2003 Share Posted October 10, 2003 I am so sorry for your loss. I can relate with where you are right now, having lost my husband December 15th. I all too well remember the feeling of complete and total loss...not able to make any decisions....feeling helpless about everything...and most of all the emptiness. It does get better...not completely ...but some better. I am pretty well back to "normal" at this point, although little things will still trigger strong emotional outbursts from time to time. The best advice I can give is to keep busy. People may tell you to "try and not think about it"...how silly. "IT"...being CANCER...has been such a terrible part of your life that it is impossible not to think about "IT." Also, find some really good people to talk to, and talk often and a lot! This board is a wonderful place to find folks that truly do understand exactly where you are and where you have been. You will be a valuable asset to others that are experiencing the things you have been through. You will help others, which will in turn help you to heal. Pray a lot and remember the good times. Please feel free to email me any time you need to chat. Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted October 10, 2003 Share Posted October 10, 2003 I am so sorry for the great loss you have suffered as well. I am only 7 weeks into grief myself and it is only slightly better . I miss my mom with every passing second. I recently had my father start to post as his depression is starting to consume him. I brought him to the doctor on Wednesday and he is on Paxil for depression but the doctor told us the only cure for this is time. I don't know how much time it takes, I guess its an individual thing. I know my dad goes to the cemetary 3 times a day and brings a chair and just sits and talks with mom. there is a path worn in the grass from his steps. I have put aside grieving until he can handle me falling apart. Dont ask how I am accomplishing this, I just am on auto pilot right now. I expect to have my breakdown in about 1-2 months. All the advice I have is get through 1 minute at a time. Cry hard and loud until you exhaust yourself and fall asleep. They say getting it out helps. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted October 10, 2003 Share Posted October 10, 2003 This sounds terribly selfish and not much comfort to you, but you are living my worst nightmare. I am sitting here feeling your pain and your loneliness. I am so, so sorry. How long were you two married - how old was your husband? Did you have children together? Just wondering, maybe it will help to talk more about your life together. You were a wonderful wife and a faithful and loyal partner. Know that your husband is in heaven and telling God what a good job you did for him. My thoughts are with you, Karen C. (wife of David C.) Quote Link to comment Share on other sites More sharing options...
norme Posted October 10, 2003 Share Posted October 10, 2003 Cynthia, After reading this I am speechless. Don't we wish we could do it over another way when it didn't work the normal way...PM you earlier. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 11, 2003 Share Posted October 11, 2003 Cynthia, I am very sorry for your loss. Fay A. Quote Link to comment Share on other sites More sharing options...
Ry Posted October 11, 2003 Share Posted October 11, 2003 Cynthia, I have been wondering where you were and why you hadn't posted. I am so so so very sorry for the loss of you husband. Quote Link to comment Share on other sites More sharing options...
karen335 Posted October 18, 2003 Share Posted October 18, 2003 Cynthia, My sincere condolences on the loss of your husband. God be with you and ease your pain.... God Bless and praying for a "Cure" for all of us.... Karen Quote Link to comment Share on other sites More sharing options...
glo Posted October 19, 2003 Share Posted October 19, 2003 Cynthia - Just wanted to echo what some other posters have told you. Your feelings at this point, painful though they are, are completely normal. I lost my husband on September 1 and have experienced all the feelings you have. After spending all day in the hospital for over a month, I too would wake and think "I have to go to the hospital -- he needs me", only to realize he's no longer there. It's been almost two months and I do have some days now where I'm not completely lost and devastated, but then it hits again. I think we are able to prepare ourselves for their death -- especially after seeing them suffer so much that we just want it to end -- what we're not prepared for is our life without them. It truly does feel like they simply cannot be gone forever. My husband also went through the hospital surgery and days that were hopeful, only to come down with staph infection and pneumonia. He was too weak to fight it off. Sure wish they could come up with something to prevent that staph infection -- the hospital has more germs than anywhere else you can go -- and many, many people die from something they contracted in the hospital rather than what they went in for. My husband had said he would try the breathing tube temporarily only and when he was on the respirator I was afraid that we'd made a mistake and the doctors would refuse to take him off, but they told him they'd try 48 hours and then if his condition had not improved they would remove it. This is how it played out and fortunately he lasted only five minutes after the tube was removed. It's so easy to accept with your mind that there was no more quality life possible for them and we are so glad they are no longer suffering, but there's just no way to get your heart to accept that. Please PM me if you just want to pour out what you're feeling. Believe me I understand -- and it's hard to do with your family because they're already hurting too and you don't want to add to that. Know that you are not alone. Many of us are going through your nightmare or have survived it. Wishing you more peace each day. Gloria Quote Link to comment Share on other sites More sharing options...
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