CancerCompass message board discussion started by Dabett on 12/21/2006 http://www.cancercompass.com/message-board/message/all,8381,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was diagnosed with stage 4 EC on 9-1-06 and passed away on 12-7-06.  I'm not posting this message to discourage anyone who has this terrible disease but to provide some support or answers to questions on something I may have experienced.  My anger is not focused on the fact that my best friend was taken away from me but towards the insurance company who refused to pay for the medicine he needed to control his acid reflux.  I feel this contributed to his diagnosis.  I do want to share with you some of things that were experienced during his treatment.  He was receiving a daily dose of radiation, he was to have 29 treatments and chemo every 4 weeks for 4 days straight.  The doctor told him that if his body could withstand this harsh treatment, he might get another year.  Unfortunately that didn't happen.  The 2 treatments together were more than what his body could take.  Since he couldn't eat or drink, he ended up having a Gtube (feeding) put in and was taking in nutrition via a syringe.  That didn't work because he was getting too much at once and not enough during the course of 24 hrs and ended up in the hospital for dehydration and a chemical imbalance.  So he was hooked up to a pump which provided nutrition during a 24 hr period.  He tried to stay positive and fought as hard as he could but pneumonia set in and since the chemo basically killed his immune system, he was much too weak to continue to fight.  Prior to all of these events he appeared to be a healthy person weighing about 220 lbs but by the time he lost his battle a couple weeks ago he maybe weighed 120.  The most difficult part for me was watching him go through all of this and trying to encourage him to go on.  We also need to step back and assess the quality of life that one is going through.  From my experience I saw a healthy man who could no longer drive, needed to use a walker, went from being happy go lucky to an angry person and then finally he didn't even have the strength to sit up in bed.  So if someone out there needs to vent or cry or just looking for a friend to talk to, I would love to listen.     Dabett Thu, 21 Dec 2006 00:00:00 GMT Sorry to hear of your loss....my husband was found to have EC on Mar 20th.  He has undergone 13 weeks of chemo and 6 weeks of radiation, he then had surgery on Oct 13th.  He was stage 2.  Since his sugery, he's had pnemonia, coughed so hard that he's broke two ribs.  He's not the same man any more...he was always full of energy and happy-go-lucky.  He's always in pain now and falls asleep in the middle of a conversation.  I try to keep positive, but I read so much, that it seems hopeless that he'll be here next Christmas....I don't know who to talk to about this.......I don't cry in front of him as I don't want him to know that I feel this way.  I also feel that if the insurance companies would give the right medicines for acid reflux, we would not be at this point. We are going to MD Anderson for treatment. Wilma c. Fri, 22 Dec 2006 00:00:00 GMT I have not lost my husband, Kevin, as of today. He has gone through 2 bouts of pnuemonia, a year and 9 months of chemo and radiation, as well as a 1.3cm tumor on his brain, which called for more radiation.(This past Feb we started going to CTCA for PDT treatments and chemo.)  It was this year, August when a brain tumor was found. After all that he had been through, while he went through the whole brain radiation, he planted a vegetable garden as well as flowers all around the tree in the backyard and the side of the house. TONS O'TOMATOES - Beautiful flowers. Neighbors would see him outside and just could not believe it. One of our friends/neighbors would actually use that against her 20 something sons and taking care of their own yard. We just got cable TV yesterday after 8 years of being together. Kevin could not sit still, or stop talking for more than 15 mins at time, so we didn't need TV. We have never gone to the movies together because he was just to hyper - Alive -  is what I say now. He keeps the feeding tube going most of the day. Since his last trip home from Tulsa (CTCA) has not been able to eat anything really. He spent 4 weeks away. Getting the tube changed out 3 times because of problems, 3 days of PDT, and going down his throat, AND getting a stent put in, as well as just checking things. And, just before he left, he had chemo. When he came home, he tried his hardest to get down soups as a starter. He tried really hard. It was just too painful. But, yesterday, he ate a bowl of homeade mac and cheese. The cheese part didn't stay down, but the macaroni did. Slow and steady, he "keeps a go." Traveling to Tulsa is too much for him now, and there is not too much else to do for him, but we believe, and this is not wearing rose colored glasses, if he is willing and able, why not try.So he will treated here, by another oncologist, since the first, come Friday.  This disease is a "Dead at Diagnosis Cancer" . But, if we don't at least try, how can we can truly know how much actual time there is left? If we don't try, if we trust ourselves, and our loved one going through it, how do we know know that we won't be part of the 12 or 20% that make it through just a little longer? Kevns quality of life has suffered of course, but, he figures, the bad days, are worth the good days he will have - and he does have good days.  Just last week, he was washing the bathroom floor???!!! - I didn't want him to but he was up to it. And he wanted to do SOMETHING. I don't know at this point if he can beat this. But, if there are those on his side, willing to fight as hard as he is, he has nothing to lose. He knows when too much is just too much. I have come to find that he knows his body and what he can and cannot take. We have been doing this a long time now. I don't push anything, I don't have to. He pushes himself.As I said, we both know the reality of this disease, but Kevin is not down for the count yet. May GOD bless all of you and help you keep your strength as you struggle and fight for yourself, or the ones that you love. Our thoughts and prayers - Sonda and Kevin  Lou38s Sat, 23 Dec 2006 00:00:00 GMT  On 12/21/2006 Dabett wrote:My husband was diagnosed with stage 4 EC on 9-1-06 and passed away on 12-7-06.  I'm not posting this message to discourage anyone who has this terrible disease but to provide some support or answers to questions on something I may have experienced.  My anger is not focused on the fact that my best friend was taken away from me but towards the insurance company who refused to pay for the medicine he needed to control his acid reflux.  I feel this contributed to his diagnosis.  I do want to share with you some of things that were experienced during his treatment.  He was receiving a daily dose of radiation, he was to have 29 treatments and chemo every 4 weeks for 4 days straight.  The doctor told him that if his body could withstand this harsh treatment, he might get another year.  Unfortunately that didn't happen.  The 2 treatments together were more than what his body could take.  Since he couldn't eat or drink, he ended up having a Gtube (feeding) put in and was taking in nutrition via a syringe.  That didn't work because he was getting too much at once and not enough during the course of 24 hrs and ended up in the hospital for dehydration and a chemical imbalance.  So he was hooked up to a pump which provided nutrition during a 24 hr period.  He tried to stay positive and fought as hard as he could but pneumonia set in and since the chemo basically killed his immune system, he was much too weak to continue to fight.  Prior to all of these events he appeared to be a healthy person weighing about 220 lbs but by the time he lost his battle a couple weeks ago he maybe weighed 120.  The most difficult part for me was watching him go through all of this and trying to encourage him to go on.  We also need to step back and assess the quality of life that one is going through.  From my experience I saw a healthy man who could no longer drive, needed to use a walker, went from being happy go lucky to an angry person and then finally he didn't even have the strength to sit up in bed.  So if someone out there needs to vent or cry or just looking for a friend to talk to, I would love to listen.    Well I certainly know where you're coming from.........I lost my beloved husband on 1-20-05............he got hit in the chest at work and thought that he was hurt and after some tests at the VA Hospital, they thought he had injured his esophagus, however; the cat scans showed that it was indeed cancer......spread from the esophagus, to the stomach and down to the liver. How we didnt know he was so sick is hard to imagine!.  Hind sight is 20- 20. He had a recurrent flu and bronchitis , and he coughed alot, and he had just recently started getting sick after he ate also. He was actually diagnosed with cancer on 12-23-04 and came home on Hospice on 1-05-05 and died at home on 1-20-05. I never had  time to digest it all. He never took chemotherapy......Drs said the first treatment would kill him and he couldnt  get a stent or anything.........after he got hit in the chest, his fragile and cancer ridden esophagus became totally strictured.... just back in August we had taken a nice vacation to Montana and I thought he was the picture of health. He was 55........so handsome and full of life........a big piece of me died with him.........it will be 2 years in a couple of weeks and yet it seems like yesterday. I miss him so....I was just surfing the boards and saw your message. Time will help you cope, but you never stop hurting. God Bless. Robin Fillygirl Fri, 05 Jan 2007 00:00:00 GMT  On 12/21/2006 Dabett wrote:My husband was diagnosed with stage 4 EC on 9-1-06 and passed away on 12-7-06.  I'm not posting this message to discourage anyone who has this terrible disease but to provide some support or answers to questions on something I may have experienced.  My anger is not focused on the fact that my best friend was taken away from me but towards the insurance company who refused to pay for the medicine he needed to control his acid reflux.  I feel this contributed to his diagnosis.  I do want to share with you some of things that were experienced during his treatment.  He was receiving a daily dose of radiation, he was to have 29 treatments and chemo every 4 weeks for 4 days straight.  The doctor told him that if his body could withstand this harsh treatment, he might get another year.  Unfortunately that didn't happen.  The 2 treatments together were more than what his body could take.  Since he couldn't eat or drink, he ended up having a Gtube (feeding) put in and was taking in nutrition via a syringe.  That didn't work because he was getting too much at once and not enough during the course of 24 hrs and ended up in the hospital for dehydration and a chemical imbalance.  So he was hooked up to a pump which provided nutrition during a 24 hr period.  He tried to stay positive and fought as hard as he could but pneumonia set in and since the chemo basically killed his immune system, he was much too weak to continue to fight.  Prior to all of these events he appeared to be a healthy person weighing about 220 lbs but by the time he lost his battle a couple weeks ago he maybe weighed 120.  The most difficult part for me was watching him go through all of this and trying to encourage him to go on.  We also need to step back and assess the quality of life that one is going through.  From my experience I saw a healthy man who could no longer drive, needed to use a walker, went from being happy go lucky to an angry person and then finally he didn't even have the strength to sit up in bed.  So if someone out there needs to vent or cry or just looking for a friend to talk to, I would love to listen.      Hi , I am so sorry about your husband.My husband is 38 and is now losing his battle with this terrible diesease.we found out he had colon cancer in 2003. We have lived a semi-normal life up until 6 months ago but now the cancer has taken over.We have traveled to Houston,and done every treatment possible,he has gone from 210lbs. to  80lbs.in the last 6 months. He is at home now,and we have a hospital bed in our room,and the hospice nurse comes every other day.I am trying to be strong for my children but it is sooo hard.How do I even prepare myself for what is going to happen? My girls 10,11 &18 have sort of put on blinders to the whole situation.They know their daddy is very sick,but they just tune it out.He is in our room dying and everyone else is in the house being normal. I just am so scared of what happens when he dies,how do you deal with it? I know we will probably need some help when it is all over.Also  what is so hard is the up and downs of my husband.One day I think oh my God,today is the day ,and then the next day he wants cheetos. Some days are so good ,and we are laughing,but the next day I think he is going to die.If you dont't mind, could you tell me how your husband spent his last days? I just want to be prepared.Thank you for your story it has helped to know I am not alone.What kind of cancer did your husband have? And how old was he? God Bless you and your family,Stacy Sw7376 Sat, 06 Jan 2007 00:00:00 GMT