Suzanne R. Posted March 29, 2010 Report Posted March 29, 2010 At the age of 61, my husband passed away on January 22, 2010 from complications of esophageal cancer. I say that because the first 28 radiation treatments he got in 2008 got rid of the esophageal cancer but he had a reoccurance on the area betweeen his shoulder and neck in March of 09 at which time a Nurse Practioner I believe misdiagnosed him by saying it was a muscle spasm so we tried topical creams, heating pads and a chiropractor. The cancer pressed on his brachial plexus which is a group of nerves in which he was in excruciating pain down his shoulder, his entire arm, his elbow and right hand and it felt burning and tingling and numb which was inoperable and got progressively worse with time and he ended up just not being able to use his arm or hand at all and he moved it around with his other hand and all Dan's Primary Doc could do was give him pain medicine which didn't always work. The 11 treatments he got for this reoccurance which ended on August 6, 09 didn't get it but we didn't find that out until December 18th, 09 when the radiation doctor at Dan's follow-up said the cancer went into his lymph nodes. He said there was nothing else he could do and he didn't know where the cancer would go from there or how long it would take and neither did we because Dan was in too much pain to last the 35 minutes in the cat scan as he had to get out of the scan machine after only 30 seconds. I think the cancer spread to inside his head and his neck because he could only lean his head at an angle and whenever we had to move him to get him comfortable it was the most awful sights as he thrashed around and the guttoral sounds that came out of his mouth were worse than any horror movie I ever seen. He continually lost a considerable amount of weight in the last 2 years and muscle mass as well because he was about 100 lbs maybe less because he couldn't get up to stand on a scale any more. Things happened kind of rapidly as I remember he leaned on me as I walked him into the bathroom and helped him, his knees buckled under him when he was in the kitchen one Saturday and he couldn't go to his appointments any more, he started to have to use the commode but soon after had to stay in the hospital bed. Once I was afraid he'd hit his head on the other rail but I caught him in time. At about 1:00 a.m. on January 22 at least the last few hours of his life I think he didn't feel much pain because he just breathed evenly and steadily because he was in that breathing transition until he passed away. His eyes didn't even close, which was really eirie and that's the way the coroner took him and they must've closed his eyes at the funeral hom. Before they came for him his mouth stayed open for about 4 hours when those of us who stayed there with him noticed it closed. That was it. All this pain and agony and going to the hospitals and doctors and cat scans and pet scans and the needle biopsy in his neck that Dan said was the worst pain he ever had in his life and the pharmacy trips and the insurance saying he can't get the medicine because it was too soon until Hospice came into the picture. I honestly believed that Hospice was suggested only for pain management. We were always hoping for a cure or a healing or a miracle. All the healing services we went to, the 9-hour surgery on December 21, 2007 for another doctor to remove a different kind of cancer from inside his mouth, (which was when this nightmare started, that's when they found out about his esophageal cancer when they took a biopsy while having oral surgery), the muscle graft, and skin grafts, and removing a 12 inch vein from his other arm to put inside his mouth all for facial reconstructive surgery, the daily trips I took to get to where he had the surgery 20 miles away, the late night trains from a city loaded with crime coming back on the train at night to where we lived where the city was loaded with crime because I asked a church if I could stay there near the hospital and because the priest said he didn't know me so he said 'no', all the praying that I requested from prayer lines, the prayers I asked from family members, the flap he had to endure from the 9-hour surgery which he had inside his mouth where the tiny growth of cancer once was where food got stuck at times, the fact that he couldn't laugh the bellowing laugh he once had, the choking and gurgling as he tried to get the tiny piece of food that was stuck whenever his esophagus started to close, the care he was supposed to be getting at a post-op rehab center in which they treated him terribly, the port he had put in his chest, the feeding tube that was put in his nose, the nasal feeding tube they removed, the feeding tube they put in his stomach, the same feeding tube that was too small and came out of his stomach causing him much pain, the port they took out because after his chemo they never used it for blood work the reason for it being placed, the feeding tube they took out because it became dislodged and he told them he was in pain and he didn't want it anymore because we had to put ensure into it and clean it, the visits from visiting nurses which we were so glad ended, all the follow-ups when while we were waiting for our transportation and when we had a light lunch and where we had hopefilled good talks that I miss, the dental work for root canals and crowns so he could eat properly, the gastroscopies (every 2 months) because he choked from dysphagia as a result of the radiation treatments to his esophagus, the follow-ups with his gastroenterologist, the scare of having a stent placed inside his esophagus which Dan refused, another diagnoses of a MALT tumor lymphoma in his stomach from a biopsy that we didn't even know they took during his last gastroscopy, the transportation arrangements, dealing with people that have no clue what pain is or what losing a husband is like, the waiting for the gastroscopy (stretching of the esophagus) in the lobby hoping he didn't die while under anasthesia, the keeping track of all his appointments on my yahoo calendar that I thought would be interesting to look at when Danny was well enough. It all stopped. If he were still alive I'd go through it again and again and I would continue to feed him and take care of him and pray for him and pray with him. I don't want to accept that he's gone or accept that there is no hope for him to get better, that we could go on with our lives and watch our 2 month old granddaughter (Dan saw her for the first and last time the night before he died, Abigail was 7 days old) and her older brother grow up or our other grandchildren date and laugh and marry and get older. Life just stopped. The only reason that I get up in the morning is knowing that he is not in excruciating agony and his 2 sons and Dan's sisters can't see how he looked on his deathbed any more. I will spare you those details. Now, I'm trying my hardest not to remember how he was in the summer of 2008, when his sister took us to the beach and took pictures of us as it really is too much to bear that we lost that hope of him getting better. I don't know about anyone else but thinking of when we used to talk to my parents and his parents when they were all alive and when Dan's sisters came over to visit with all their hopes of him getting better were dashed when the worst thing in our world happened. I can't look at pictures of him when he was well because it is just too unbearable but only a few realize how I feel. Oh, well, I will get along in life, I actually made the plans for the wake and funeral and the church service and the burial and the family get-together on the days after Danny passed away and I thank the Lord that He got me through it. I am living and going to my appointments, doing my errands, and mourning Danny and saying have a nice day to others and doing what I can to get myself through the day, saying my prayers sometimes weeping through them. God is carrying me and our families are here as well as support groups. I just thought I'd write this in case anyone would like to know our sad true story. I know each and every one of us is bearing great crosses and trying to get through each day without our loved one. We are all caring individuals who got a taste of real life and we each have our own story to tell and we are helping one another. Maybe that's what we are all supposed to be doing. I just wish there was a way we could've figured this out without going through all this pain. Maybe there's just no other way. This is the beginning of my story at the age of 56. P.S. This kind of helped me so I really appreciate being able to say what I needed to say.
Daughter2010 Posted March 29, 2010 Report Posted March 29, 2010 Suzanne, First of all let me say I am very sorry for your loss. What each one of us has endured with the loss of our loved ones is a unique and very personal experience. I am glad you told us your story, glad in the sense that telling others what we've gone through somehow helps us with the mourning process. My dad died from stomach cancer, I can relate to your story. Only thing I can say is this type of event makes us look at our own mortality and it is the harsh reality. Only God knows what is in store for each one of us, and the only thing we can do is live, really live because tomorrow is not guaranteed to anyone of us. For me, I don't know what I would have done had i not found this forum. I can vent, and read about other's stories and understand I am not alone in feeling what I feel. I say this because many of my friends have not experienced the loss of a husband, mother, father, brother, sister...so they can't quite understand what we go through. Same goes for my boyfriend, even though he is supportive, he can't understand, and at times I am just left with my close family and this forum to understand more about what I feel. I wished there were better things to say, but as you said, the Lord is carrying you through this and I have found that leaning on God has helped me soooo much, it doesn't take away the pain but makes it more bearable. I know this is a hard time for my mother, who is 53 and was married to my dad for 32 years. There is a special bond in marriage that when husband and wife are separated by death, it is tough trying to adjust to the new reality, and that's what she is going through, as I am sure you maybe experiencing something simmilar. My heart goes out to you, many many hugs to you and know that you are not alone in this, you have us...this family. a family that we joined not by choice..but by circumstance. What I find so great about here is that I can vent, and write whenever I feel like without being judged or being told I need to move on....losing my dad is all so new and I didnt know how others felt about their losses. Anyhow, take it one day at a time, that's how I do it. We have no choice but to keep going. -L
Korina Posted March 29, 2010 Report Posted March 29, 2010 Thank you for sharing your story. It has been over 9 months, and in another thread, I have been writing about mine. I still hurts terribly, but it continues to help relieve the pain. And as the for the pain, I don't believe there is any way to survive without going through all the hurt. I guess grief is one way we continue to express our love for them, now. By the way, it still is unbearable for me to look at pictures, except for the 3 I have in the living room. I put some together for a slide show at the memorial and funeral, but was able to do that because it was, as my mom would say, a 'project'. I hope you continue to visit the forum, because you will be able to share with people who feel and understand what you are experiencing. Take care, Korina
LarrysGirl Posted March 29, 2010 Report Posted March 29, 2010 Thank you for sharing with us, I hope you will continue to do so. This will help in your healing. I can so relate, as my Larry endured many years of hospitalizations, dr. appts, every test known to man, experimental medicines, pain and so much more. I, too, would do it all again, to have him with me. And like you said, I'm so grateful that he is not suffering anymore. We have to find our way and put some sort of life back together. This all takes time and for me at 4 yrs. it is still a struggle. I hope you will find some peace and comfort soon. Take good care of yourself, Deborah
Sharon3 Posted March 29, 2010 Report Posted March 29, 2010 Korina You are the first person that I have read that can't look at pictures....I was beginning to think I was the only one and I really don't understand it. I too had projects. I made a book for our Granddaughter who was only 8 months old when my husband passed away so I took every picture of them together and a few others and made a book which I treasure and my son treasures. He reads it to my granddaughter all the time. I have had a quilt made out of his clothes....I made a collage for my son of all the pictures of them working together, for his workshop. (my husband was a carpenter and my son learnt a lot from him and does a lot of carpentry, although his career is as a police officer). I too have had many projects but can't look at pictures.....................it has been 13 months and I hope one day I can look at pictures. Suzanne ......thanks for sharing...I am sorry for your loss.
Vickie O Posted March 30, 2010 Report Posted March 30, 2010 Suzanne, I'm so sorry for your husbands death. I know how difficult it is to keep the brave front & the prayers & all the balls in the air during an illness. I know how devastating it is when the end happens, & the Dr's were not right. Mistakes were made in the "practicing" of medicine. I know how Pat & I felt, we had become like highly trained dogs, jumping through constant hoops & tests bearing the flag of hope in our hearts. I recall the afternoon Pat was in the hospital, & the Dr. said his body was not strong enough to handle a new medicine they wanted to administer. The next day they gave him the medicine & I had a call at work saying he had flatlined. I rushed to the hospital & Pat was alive, & awake & just told me had nearly died. That medicine may have been the reason that he went down so fast a month later. Fell in the street getting the newspaper & laid on the hot pavement in July in Phoenix, Until I heard him screaming. Back to the Dr's & he had no blood pressure...suddenly they were putting him through more heart tests, said he was diabetic, & on & on. Pat never made it out of ICU, he was disqualified for an organ donation. One wonderful day the Dr's walked in & asked Pat if he was in pain, & he said yes, & they gave him pain meds. The hospice talk was held, & he was moved to Palliative care at Baptist Hospital. I rode in the minivan Hospice sent with no AC in the back & his last words were "its so Hot" At hospice they knocked him out with heavy duty morphine & they finally decreased it daily claiming he would be in pain, selfish on my part but I wanted to say goodbye, & I love you. The Hospice nurses kept bringing in trays of food, I never did understand that. I was very angry & still am about Pat's death, & the way family members acted....like bringing the kids to hospice? My husband's brother came 1 time, his sisterinlaw not once & his Dad not once. My family showed up, Mom & a sister, but the constant praying & reading of cheery books just wore me down, I am grateful they were there for me. You know sitting there almost drove me insane. Watching the last urine drip out of the catheter, & Hospice's Irish Chaplain that said Prayer's & the whole thing was simply anathema to me. Pat & I had promised one another many years back that we would use the silver bullet, a gunshot to the head, but I was not brave enough or strong enough to do that
TerryY Posted March 30, 2010 Report Posted March 30, 2010 At the age of 61, my husband passed away on January 22, 2010 from complications of esophageal cancer. I say that because the first 28 radiation treatments he got in 2008 got rid of the esophageal cancer but he had a reoccurance on the area betweeen his shoulder and neck in March of 09 at which time a Nurse Practioner I believe misdiagnosed him by saying it was a muscle spasm so we tried topical creams, heating pads and a chiropractor. The cancer pressed on his brachial plexus which is a group of nerves in which he was in excruciating pain down his shoulder, his entire arm, his elbow and right hand and it felt burning and tingling and numb which was inoperable and got progressively worse with time and he ended up just not being able to use his arm or hand at all and he moved it around with his other hand and all Dan's Primary Doc could do was give him pain medicine which didn't always work. The 11 treatments he got for this reoccurance which ended on August 6, 09 didn't get it but we didn't find that out until December 18th, 09 when the radiation doctor at Dan's follow-up said the cancer went into his lymph nodes. He said there was nothing else he could do and he didn't know where the cancer would go from there or how long it would take and neither did we because Dan was in too much pain to last the 35 minutes in the cat scan as he had to get out of the scan machine after only 30 seconds. I think the cancer spread to inside his head and his neck because he could only lean his head at an angle and whenever we had to move him to get him comfortable it was the most awful sights as he thrashed around and the guttoral sounds that came out of his mouth were worse than any horror movie I ever seen. He continually lost a considerable amount of weight in the last 2 years and muscle mass as well because he was about 100 lbs maybe less because he couldn't get up to stand on a scale any more. Things happened kind of rapidly as I remember he leaned on me as I walked him into the bathroom and helped him, his knees buckled under him when he was in the kitchen one Saturday and he couldn't go to his appointments any more, he started to have to use the commode but soon after had to stay in the hospital bed. Once I was afraid he'd hit his head on the other rail but I caught him in time. At about 1:00 a.m. on January 22 at least the last few hours of his life I think he didn't feel much pain because he just breathed evenly and steadily because he was in that breathing transition until he passed away. His eyes didn't even close, which was really eirie and that's the way the coroner took him and they must've closed his eyes at the funeral hom. Before they came for him his mouth stayed open for about 4 hours when those of us who stayed there with him noticed it closed. That was it. All this pain and agony and going to the hospitals and doctors and cat scans and pet scans and the needle biopsy in his neck that Dan said was the worst pain he ever had in his life and the pharmacy trips and the insurance saying he can't get the medicine because it was too soon until Hospice came into the picture. I honestly believed that Hospice was suggested only for pain management. We were always hoping for a cure or a healing or a miracle. All the healing services we went to, the 9-hour surgery on December 21, 2007 for another doctor to remove a different kind of cancer from inside his mouth, (which was when this nightmare started, that's when they found out about his esophageal cancer when they took a biopsy while having oral surgery), the muscle graft, and skin grafts, and removing a 12 inch vein from his other arm to put inside his mouth all for facial reconstructive surgery, the daily trips I took to get to where he had the surgery 20 miles away, the late night trains from a city loaded with crime coming back on the train at night to where we lived where the city was loaded with crime because I asked a church if I could stay there near the hospital and because the priest said he didn't know me so he said 'no', all the praying that I requested from prayer lines, the prayers I asked from family members, the flap he had to endure from the 9-hour surgery which he had inside his mouth where the tiny growth of cancer once was where food got stuck at times, the fact that he couldn't laugh the bellowing laugh he once had, the choking and gurgling as he tried to get the tiny piece of food that was stuck whenever his esophagus started to close, the care he was supposed to be getting at a post-op rehab center in which they treated him terribly, the port he had put in his chest, the feeding tube that was put in his nose, the nasal feeding tube they removed, the feeding tube they put in his stomach, the same feeding tube that was too small and came out of his stomach causing him much pain, the port they took out because after his chemo they never used it for blood work the reason for it being placed, the feeding tube they took out because it became dislodged and he told them he was in pain and he didn't want it anymore because we had to put ensure into it and clean it, the visits from visiting nurses which we were so glad ended, all the follow-ups when while we were waiting for our transportation and when we had a light lunch and where we had hopefilled good talks that I miss, the dental work for root canals and crowns so he could eat properly, the gastroscopies (every 2 months) because he choked from dysphagia as a result of the radiation treatments to his esophagus, the follow-ups with his gastroenterologist, the scare of having a stent placed inside his esophagus which Dan refused, another diagnoses of a MALT tumor lymphoma in his stomach from a biopsy that we didn't even know they took during his last gastroscopy, the transportation arrangements, dealing with people that have no clue what pain is or what losing a husband is like, the waiting for the gastroscopy (stretching of the esophagus) in the lobby hoping he didn't die while under anasthesia, the keeping track of all his appointments on my yahoo calendar that I thought would be interesting to look at when Danny was well enough. It all stopped. If he were still alive I'd go through it again and again and I would continue to feed him and take care of him and pray for him and pray with him. I don't want to accept that he's gone or accept that there is no hope for him to get better, that we could go on with our lives and watch our 2 month old granddaughter (Dan saw her for the first and last time the night before he died, Abigail was 7 days old) and her older brother grow up or our other grandchildren date and laugh and marry and get older. Life just stopped. The only reason that I get up in the morning is knowing that he is not in excruciating agony and his 2 sons and Dan's sisters can't see how he looked on his deathbed any more. I will spare you those details. Now, I'm trying my hardest not to remember how he was in the summer of 2008, when his sister took us to the beach and took pictures of us as it really is too much to bear that we lost that hope of him getting better. I don't know about anyone else but thinking of when we used to talk to my parents and his parents when they were all alive and when Dan's sisters came over to visit with all their hopes of him getting better were dashed when the worst thing in our world happened. I can't look at pictures of him when he was well because it is just too unbearable but only a few realize how I feel. Oh, well, I will get along in life, I actually made the plans for the wake and funeral and the church service and the burial and the family get-together on the days after Danny passed away and I thank the Lord that He got me through it. I am living and going to my appointments, doing my errands, and mourning Danny and saying have a nice day to others and doing what I can to get myself through the day, saying my prayers sometimes weeping through them. God is carrying me and our families are here as well as support groups. I just thought I'd write this in case anyone would like to know our sad true story. I know each and every one of us is bearing great crosses and trying to get through each day without our loved one. We are all caring individuals who got a taste of real life and we each have our own story to tell and we are helping one another. Maybe that's what we are all supposed to be doing. I just wish there was a way we could've figured this out without going through all this pain. Maybe there's just no other way. This is the beginning of my story at the age of 56. P.S. This kind of helped me so I really appreciate being able to say what I needed to say.
TerryY Posted March 30, 2010 Report Posted March 30, 2010 I am so sorry for your loss. It has been 5 and 1/2 weeks since my husband went to Jesus. He wenet through 21 years of disabilities. Having throat sugery didn't kill him, losing his right leg above the knee didn't, open heart surgery couldn't kill him, but cholangiocarcinoma (bile duct cancer) did. It has a 2 out of 100,000 ratio rate, and a 2% survival rate. I went to our family doctor today, she asked me how he was doing, she never got my messages, and hospice never called her. Thank God I had my daughter with me. lWe had in patient hospice for one day, he had been in the hospital for 3 weeks. I am so sorry about the church not letting you stay in town near your husband. I know sometimes our hospitals have a extra room that they will let relatives stay if they have a long way to travel. I spent every night at the hospital, and the night at hospice. I would give anything to have him back but I don't want him to hurt like he did anymore. I go visit the cemetery as often as I can, my car broke down while he was in the hospital and I don't have the money to get it repaired. My income dropped 75%. Everything now is a luxsury, even food, medicine and even garbage collection. I had to cancel collection, I asked if there were any programs for people like me, she said yes we will be glad to pick up the garbage can. Thank God I do have a job, even though I have to get someone to come by and pick me up. Try going to www.wandascountryhome.com, it is very comforting. TerryY
Maryo Posted March 31, 2010 Report Posted March 31, 2010 Hi Suzanne, I am sorry for the loss of your husband. Everyone told me life would get easier and I can speak from experience it will but first I had to go through this grieving journey and it was the hardest thing I have ever gone through. The first few months are the hardest and some days I just stayed in bed but I learned to take one day at a time and don't make any major decisions at the beginning because I changed my mind like the weather.My husband died July 2008. I will always miss him that will never change but I am learning to live this new life. This site is a blessing. I have found new friends and lots of comforting words. Take care. Mary Lou
kayc Posted March 31, 2010 Report Posted March 31, 2010 Suzanne, I'm sorry you lost your husband...mine passed away Father's Day nearly five years ago at the age of 51...we hadn't known he had heart trouble until that weekend. It helps to share your story, I have found it is validating to express what is inside of us rather than holding it in. This is a very good place you've found, there is always someone around with a listening ear and a caring heart. My best to you
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