Need to talk more

Hi everyone,

Its me again. Thanks to all of you for the words of prayers.

Most of you have said to not to give up hope, live each day to its fullest.

That is so hard to do, for my husband has already given up. It has been only since March 26th, of this year that this all began. Before this my husband was never sick. He is a proud man, that worked hard all of his life. He lands in the hospital with problems that we thought was gallbladder. With in 9 weeks he has had 5 stints put in the bile duct, he has had a infection with the white blood count way up there, while in the hospital he got malnutioned. They first thought the infection was caused by a stone from the gallbladder got lodged in the bile duct, which caused everything to back up. His ( belaruhbon count) from the liver was over 200 he was amber in color due to the bile. His eyes glow they are so orange. The biopsy from the blockage turned out to be a tumor, and they said that was not the primary source of cancer, so they did all kinds of test. Came back that the primary source was the pancreas. They than said they were going to do the Whipple on him. Up to this point he lose 52 lbs in the nine weeks. They still havent cleared up the infection. He just kept getting weaker. When they went in to do the Whipple, they couldnt do it. The tumor had gone way beyound. It has grown the size of a popbottle, into the nerves of his back. They ended up doing just a bypass. That was May 11. He is home now with a pain pump, and a feeding tube. He just sits and stares at nothing. I try to get him to talk, but he doesnt. This has all just happened so fast. In March we were in Flordia on vacation having a wonderful time, and healthy as can be, now what just 2 months later he has been through so much, and has lost so much weight. Its like being hit by a semi, and very hard to deal with. So I sit with him and my heartaches so much, I can only image what he must be going through. I dont know how to help him, when I tell him he has to fight, he says thats easy for you to say, how do I fight when I dont have the strength to do nything. Than I feel bad for saying it. I just feel like I make things worse. There is no winning here.

On 6/8/2007 my Soul wrote:

Hi everyone,

Its me again. Thanks to all of you for the words of prayers.

Most of you have said to not to give up hope, live each day to its fullest.

That is so hard to do, for my husband has already given up. It has been only since March 26th, of this year that this all began. Before this my husband was never sick. He is a proud man, that worked hard all of his life. He lands in the hospital with problems that we thought was gallbladder. With in 9 weeks he has had 5 stints put in the bile duct, he has had a infection with the white blood count way up there, while in the hospital he got malnutioned. They first thought the infection was caused by a stone from the gallbladder got lodged in the bile duct, which caused everything to back up. His ( belaruhbon count) from the liver was over 200 he was amber in color due to the bile. His eyes glow they are so orange. The biopsy from the blockage turned out to be a tumor, and they said that was not the primary source of cancer, so they did all kinds of test. Came back that the primary source was the pancreas. They than said they were going to do the Whipple on him. Up to this point he lose 52 lbs in the nine weeks. They still havent cleared up the infection. He just kept getting weaker. When they went in to do the Whipple, they couldnt do it. The tumor had gone way beyound. It has grown the size of a popbottle, into the nerves of his back. They ended up doing just a bypass. That was May 11. He is home now with a pain pump, and a feeding tube. He just sits and stares at nothing. I try to get him to talk, but he doesnt. This has all just happened so fast. In March we were in Flordia on vacation having a wonderful time, and healthy as can be, now what just 2 months later he has been through so much, and has lost so much weight. Its like being hit by a semi, and very hard to deal with. So I sit with him and my heartaches so much, I can only image what he must be going through. I dont know how to help him, when I tell him he has to fight, he says thats easy for you to say, how do I fight when I dont have the strength to do nything. Than I feel bad for saying it. I just feel like I make things worse. There is no winning here.

You guys are in for the fight of your lives, and you know what, you might loose this fight ...but don't beat yourself up over this. 1. never feel bad about anything you say 2. all of a sudden you world is turned upside down, there are no rules as to what is the right or wrong way to say something and 3. Your husband may not have the energy to fight and there is nothing wrong with that.

People react to death or the thought of dying in different ways.  I wathched my husband go from 220 to 160 in 2 months, he was so jaundiced the tears he occasionally shed were yellow.  He developed blood clots in the end, 600 mg of Oxycontin a day to control pain made him constipated, he quit eating. he couldn't urinate, he couldn't walk he was so weak, he couldn't bathe himself.  He had to be catheterized. I could go on and on.  He never gave up hope, however.

All I'm trying to show you is two men,  each who are dying and there is no right and no wrong way to die.  It is there choice on how they choose to deal with it.  Just be there for him, no matter how he chooses to deal with it.  You don't have to understand it right now, just be with him and love him like you always have.  He will tell you what he needs, and you will understand those needs....and in that sense you are winning. 

On 6/10/2007 Robinlynn wrote:

 

On 6/8/2007 my Soul wrote:

Hi everyone,

Its me again. Thanks to all of you for the words of prayers.

Most of you have said to not to give up hope, live each day to its fullest.

That is so hard to do, for my husband has already given up. It has been only since March 26th, of this year that this all began. Before this my husband was never sick. He is a proud man, that worked hard all of his life. He lands in the hospital with problems that we thought was gallbladder. With in 9 weeks he has had 5 stints put in the bile duct, he has had a infection with the white blood count way up there, while in the hospital he got malnutioned. They first thought the infection was caused by a stone from the gallbladder got lodged in the bile duct, which caused everything to back up. His ( belaruhbon count) from the liver was over 200 he was amber in color due to the bile. His eyes glow they are so orange. The biopsy from the blockage turned out to be a tumor, and they said that was not the primary source of cancer, so they did all kinds of test. Came back that the primary source was the pancreas. They than said they were going to do the Whipple on him. Up to this point he lose 52 lbs in the nine weeks. They still havent cleared up the infection. He just kept getting weaker. When they went in to do the Whipple, they couldnt do it. The tumor had gone way beyound. It has grown the size of a popbottle, into the nerves of his back. They ended up doing just a bypass. That was May 11. He is home now with a pain pump, and a feeding tube. He just sits and stares at nothing. I try to get him to talk, but he doesnt. This has all just happened so fast. In March we were in Flordia on vacation having a wonderful time, and healthy as can be, now what just 2 months later he has been through so much, and has lost so much weight. Its like being hit by a semi, and very hard to deal with. So I sit with him and my heartaches so much, I can only image what he must be going through. I dont know how to help him, when I tell him he has to fight, he says thats easy for you to say, how do I fight when I dont have the strength to do nything. Than I feel bad for saying it. I just feel like I make things worse. There is no winning here.

You guys are in for the fight of your lives, and you know what, you might loose this fight ...but don't beat yourself up over this. 1. never feel bad about anything you say 2. all of a sudden you world is turned upside down, there are no rules as to what is the right or wrong way to say something and 3. Your husband may not have the energy to fight and there is nothing wrong with that.

People react to death or the thought of dying in different ways.  I wathched my husband go from 220 to 160 in 2 months, he was so jaundiced the tears he occasionally shed were yellow.  He developed blood clots in the end, 600 mg of Oxycontin a day to control pain made him constipated, he quit eating. he couldn't urinate, he couldn't walk he was so weak, he couldn't bathe himself.  He had to be catheterized. I could go on and on.  He never gave up hope, however.

All I'm trying to show you is two men,  each who are dying and there is no right and no wrong way to die.  It is there choice on how they choose to deal with it.  Just be there for him, no matter how he chooses to deal with it.  You don't have to understand it right now, just be with him and love him like you always have.  He will tell you what he needs, and you will understand those needs....and in that sense you are winning. 

Hi Robinlynn,

I understand what you're going through. Eight weeks ago my husband of 61 was diagnosed with bile duct cancer. They tried surgery but the liver had allready been so much involved that they stopped the operation. He too was the healthiest man you can imagine. Allways looked after his body, did a lot of sports, never smoked. Our world was falling apart. We asked a lot of questions to the doctors and we know we don't have much time left.

However, he is home now and we are having wonderful days together. Because of the stent he is eating, he is in no pain, the itch and yellowness are gone. The timebomb is ticking on, but we love eachother every morning when we open our eyes together.

Sometimes we cry, but most of the time we can talk about things. Our two wonderful grown-up sons are standing tall and supporting us. We get lots of cards, e-mails and flowers from friends, collegues and family. And though we are not connected to a religion, we found peace.

We had 33 wonderful years together. His body has done an excellent work for allmost 61 years. So, in all our grieve, we also feel very rich.

I sincerely wish and hope that you and your husband can do the same. Make the days that you have left. Enjoy talking to caring friends and family, enjoy the sunshine and the flowers.

I am with you in my thoughts.

Iris (the Netherlands)

Dear My Soul,

I could have written your letter. Those are the same feelings I have. My husband (56) years old was diagnosed with pancreatic cancer Nov.2, 2006. Was on vacation just the week before. Went back to work on Mon. & Wed. went to his knees with severe abdominal pain. Surgeon said something wrong with spleen. But with no severe trauma to stomach was at a loss as to what. Went in to look as he found bleeding on CAT scan. Malignant tumor on tail of pancreas that had invaded his spleen. 1 lymph node positive & small tumor in pelvic region. My world had shattered. I screamed, cried, asked God why? It felt like my heart & soul had been ripped from my body. Dr. said he wouldn't have lived 2 weeks without the surgery & he only had 4 to 6 mo left. He is still alive 8 mo. later. For the first few weeks he would not talk about it at all. When he came to grips with it himself he decided to fight. This was not supposed to be us. It was supposed to be somebody else. It has a feeling of unreality to it. We enjoy every day we have together. There is such peace just being together. My mind will not let me go beyond the right now. I cannot even fathom being alone & without him.When I read your message I just had to write you. I know your pain. May God bless you both & keep you in the shelter of his arms.

Have you considered getting a second opinion? My 46 y/o brother was diagnosed in January with no options offered by his doctors.  Our sister got online, found Dr. Howard Bruckner in Manhattan, Joe now feels better than he did before his diagnosis.  We're all aware of the long-term prognosis, but who's to say that Joe or your husband will not be the one who "makes" it?  He has had a stent placed in his gallbladder and receives heavy doses of chemo every two weeks but he will be here to walk his daughter down the aisle in August and we will all be smiling through our tears!  Our sister was also able to locate an oncologist at IU Med Center who agreed to use Dr. Bruckner's protocol, so Joe is able to have his treatment within 75 miles of home. 

 I understand that staring off into space look.  My family calls it "the deer in the headlights" look.  I had a mastectomy for breast cancer 8 years ago and our sister had uterine cancer so we've been through a lot together.

Please, take care of yourself and know that only your husband can make these decisions, as difficult as that is for both of you.  My thoughts are with you.

Susan