CancerCompass message board discussion started by KatyB on 2/9/2008 http://www.cancercompass.com/message-board/message/all,20782,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ This has been a rough week for my husband and I.  I don't post messages that often about his condition because I feel so badly for those of you just entering this nightmare.  He has survived 28 months in stage IV because he fought hard in the beginning and was young (48) and otherwise strong and healthy.  His cancer continues to grow and in addition to mets to his spine and brain it has now invaded his liver and another thoracic vertabrae.In January his ability to eat diminished greatly and even the EGD didn't help. He began vomitting almost daily even though he couldn't eat anything or drink much water or other liquids.  The pain in his back and abdomen wasn't being controlled by the Fentanyl pain patch even when it was doubled.  I called his doc and took him in 3 times for hydration and no medicines were really helping control the nausea.  He had a nerve block to try and alleviate the spine and rib pain but the pain relief was minimal and only lasted a couple of days.  Last Friday his oncologist said she consulted with the anesthesiologist and he suggested a pain pump be implanted to deliver pain medicine via the intrathecal space in his spine.  That was done on Monday and it does seem to be providing some relief.  They also placed a peg tube in his stomach and while he was in the hospital they started a small amount of continuous feeding through the tube.  That went ok and he feels more comfort now from having some type of nutrition going into his stomach.  He had the peg tube in the very beginning and it was the only way he could get anything to eat and we're back to that again.  The difference is that we know we're at the end so it won't be coming out.  He came home from the hospital on Friday and we're both exhausted.  As soon as we got home he started having intense leg pain.  He has had this pain for a few weeks now and they thought the pump should take care of all of his pain issues and it hasn't.  We will already need to go back to have the pain medicine increased.  Travelling the 7 miles (we are lucky to be close) to the hospital campus is very rough on him.  It makes him anxious and he doesn't want to leave home at all.The doctor told him while he was in the hospital that he may need to have another procedure done to allow him to swallow his own saliva.  He was given 3 options and none of them are pleasant.  This news caused more anxiety but we appreciated that he talked with us about it.  My husband is feeling very anxious and afraid and it makes my heart ache.  We know he is near the end and every time he sleeps I am terrified that he isn't going to wake up.  We love each other so much and it hurts both of us to know that we aren't going to be together much longer. KatyB Sat, 09 Feb 2008 00:00:00 GMT KatyB, I am so sorry for the ordeal you and your husband are having to go through.  I know it must be tough for you to sit by and not be able to do anything to help him.  My dad caught his EC early and had his esophagus removed Jan 23.  The doctor told us he would be in the hospital for 7-10 days and we're now on day 17.  He is still on the ventilator and is still unconcious and his oxygen saturation continues to drop.  I know the Lord is going to heal him though.  I feel it in my heart.  You must have faith.  "I have carried you since you were born; I have taken care of you from your birth. Even when you are old, I will be the same. Even when your hair has turned gray, I will take care of you. I made you and will take care of you," says the Lord. Isaiah 46:3-4 DonHo Sat, 09 Feb 2008 00:00:00 GMT KatyB and DonHo,         I just wanted both of you to know I am praying for you and your family.                                          Pat Patty5 Sat, 09 Feb 2008 00:00:00 GMT So sorry you've had such a heartbreaking week with your husband. My heart aches for you and although I know I can't say anything to make it better, I still wish there was something I could offer. At times we can offer our experience as a form of comfort but I have no experience to offer you. The one thing I keep offering no matter what is the gift tongren has been to us. There are many practitioners who offer this healing as their service with the hope of sharing it with those truly in need of healing. An online search of tongren healing should bring up the conference call info. The Stage 4 Cancer Group is not listed there but I have info on their meeting days and time. You have to search a little harder to find that info online, so if you feel any inclination you could message me for info. I pray that your home will be filled with healing light through this night, and that it be both peaceful and restful. tongrenhealer Sat, 09 Feb 2008 00:00:00 GMT  On 2/9/2008 KatyB wrote:This has been a rough week for my husband and I.  I don't post messages that often about his condition because I feel so badly for those of you just entering this nightmare.  He has survived 28 months in stage IV because he fought hard in the beginning and was young (48) and otherwise strong and healthy.  His cancer continues to grow and in addition to mets to his spine and brain it has now invaded his liver and another thoracic vertabrae.In January his ability to eat diminished greatly and even the EGD didn't help. He began vomitting almost daily even though he couldn't eat anything or drink much water or other liquids.  The pain in his back and abdomen wasn't being controlled by the Fentanyl pain patch even when it was doubled.  I called his doc and took him in 3 times for hydration and no medicines were really helping control the nausea.  He had a nerve block to try and alleviate the spine and rib pain but the pain relief was minimal and only lasted a couple of days.  Last Friday his oncologist said she consulted with the anesthesiologist and he suggested a pain pump be implanted to deliver pain medicine via the intrathecal space in his spine.  That was done on Monday and it does seem to be providing some relief.  They also placed a peg tube in his stomach and while he was in the hospital they started a small amount of continuous feeding through the tube.  That went ok and he feels more comfort now from having some type of nutrition going into his stomach.  He had the peg tube in the very beginning and it was the only way he could get anything to eat and we're back to that again.  The difference is that we know we're at the end so it won't be coming out.  He came home from the hospital on Friday and we're both exhausted.  As soon as we got home he started having intense leg pain.  He has had this pain for a few weeks now and they thought the pump should take care of all of his pain issues and it hasn't.  We will already need to go back to have the pain medicine increased.  Travelling the 7 miles (we are lucky to be close) to the hospital campus is very rough on him.  It makes him anxious and he doesn't want to leave home at all.The doctor told him while he was in the hospital that he may need to have another procedure done to allow him to swallow his own saliva.  He was given 3 options and none of them are pleasant.  This news caused more anxiety but we appreciated that he talked with us about it.  My husband is feeling very anxious and afraid and it makes my heart ache.  We know he is near the end and every time he sleeps I am terrified that he isn't going to wake up.  We love each other so much and it hurts both of us to know that we aren't going to be together much longer.My prayers are with both of you!! My husband has kidney cancer,he is 50.So I know what you are going threw. keep us posted.                                  Rally 53 rally53 Sat, 09 Feb 2008 00:00:00 GMT Hi Katy:  My name is Lynn and my son, Robbie, was diagnosed with Stage IV EC on April 6, 2006 at the age of 34.  At that time, he had a very large tumour covering 95% of his esophagus and had mets to the liver.  Robbie chose to fight agressively as your husband has done and although the doctors only gave him 3-4 months WITH treatment (3 weeks without), he fought valiantly and managed to survive until October 7, 2007.  Robbie was married with 2 young daughters 8 and 5 and he passed away just 10 days before his eldest daughter turned 9.  I cannot tell you that I know how you feel because I have not lost my husband.  I can tell you that I promised Robbie early on that I would support him in any decision he made even the decision to stop treatment if and when he felt he had had enough.  I know now that Robbie was hiding much of the pain he was having from all of us.  Up until September 25, 2007 he only took Tylenol #4 for pain.  When the oncologist saw him then she could not believe that he was functioning on such low doses of pain medication.  Robbie experienced pain in his back and in his stomach from the mets to the liver.  He also had leg pain but up until the day before he died he was still up and about.  Robbie had made it very clear to the doctors and to his wife and family that he did not want to die in a hospital or hospice but rather at home, we all supported his wish.  Robbie also had a peg tube at the beginning but he refused any further treatment after late August.  We all knew that the end would not be far off.  I saw my son the evening before he died and like your husband he could not swallow and was retching all the time.  I watched my beloved child for a little while and then I went over to him and said that it should be me and not him but I am not in charge.  I told him that I loved him more than life itself and that I did not want to lose him but it broke my heart in 2 to watch him suffer.  I told him that my husband and I would look after Maria and his little girls and that if Jesus came to take His Hand and go.  Robbie kissed me and told me he loved me very much and 12 hours later my dear boy was gone.Katy, I have no idea what your faith is like, but I can honestly tell you that I would not want Robbie back to suffer again.  I am not saying that I don't love him and I don't wish that he was still here or that I am "better" or have "accepted" his loss, or that I am "over" it.  The only thing that I can say is that I know he waits for me at Heaven's Gate and that he no longer suffers.  The hardest thing I ever did in my life was to tell my dear child to die in peace. I am still havng trouble with that emotionally.I know that you will miss your husband very very much when his time comes but please be gentle with yourself.  You need to take care of yourself and you need to rest and be strong for him.  I was strong for my boy throughout his illness and his passing and I will admit that I am paying for it now both physically and emotionally but I am taking little steps towards a "new" normal life.  I will pray for God's Peace and Blessing on you both.I only tell you Robbie's story so that you know that you are not alone.Love and Hugs to youLynn  Momlynn Mon, 11 Feb 2008 00:00:00 GMT