lsisman
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no you don’t have to make him eat. He actually has been eating, but not all hospital food looks like you want to eat it. if youknow what I mean. I will be honest, he has been in devastating pain for well over a month now, and to think that some esophogus deal is causing it, I’m sorry, I just don’t buy it. But he is on antibiotics and I always thought maybe he had an infection, so we shall see. He said he thinks it is gradually getting better. We shall see. Right now he just misses sitting and smoking a fine cigar. Wednesday wont’ come quick enough . haha
Update. They found that my husband has some fungus in his esophogus! Yuck, that they said that is what is causing his pain. I can’t believe it, it is low stomach area pain but guess your esophogus goes all the way down. Also he is on morphine pump that started at 1 unit of morphine and he can push the boulus to get up to 3 unites in an hour, it was increased due to pain. They wanted to get it to a level where if he felt he was at pain 9 (scale 1-10) he should get morphine and pain should drop to a 3. Well he is now getting 5 units of morphine an hour and can get up to 7 an hour! Wow, he can’t carry a conversation and is so out of it. I hate how he looks, acts, everything. But they have him on antibiotics and says it will be 10 days to fix the fungus. You never know he may get out of pain!!! He must eat all meals for two days before they will let him leave the hospital. This is amusing. before his test, one doc said he had air in his lung, the other said he had 1/2 a collapsed lung, then regarding the ERCP test, one said they were optimistic to find something and the other said they didn’t think they woudl find anything. How frustrating!!!! Oh and they were giving him a third of his anxiety rx AS NEEDED so he was getting attacks and then it woudl be too late. They couldn’t bring him anything or help him. He suffered for an hour twice. I got in their face. They were supposed to give him 3 times the amount (.75 not .25) and 3 times a day not AS NEEDED. Now he is on a schedule and having no attacks. Sorry, hospitals are so incapable and ineffcient and I have nothing nice to say except that the staff has been nice and it is the best hospital in our area. He comes home Wed, lets hope it is good.
My husbands special catscan showed nodes in better shape than before the first Gemzar dose and no tumor markers. What they think is some sort of infection or something that they can’t see. They will schedule an ERCP to explore and view what is going on in there. So we got some good news and waiting on the rest.
I don’t expect him to gain back much of anything but he looks like a walking bone and even if he put back on 20 you wouldn’t see it. he eats whatever he wants but never fatty foods, cereal and milk, he has whatever I make for dinner. he has pb&j sandwich for lunch. he doens’t notice any foods except maybe hamburge and some heaveir meats to not sit well. what he eats and all has not affected him one way or another on bloat or gas and options are not an issue. When they say he is not even retaining pain meds on top of it, shoot, doesn’t matter what he puts in even with water, it ain’t working! We shall see. I’m not realy looking for solutions or advice, just venting who sucky everythign is. His nerve block is on Monday so maybe that will take his edge off.
Thanks marions. I will ask about it, he is so boney it is devastating and I don’t know how they can let it go on. They seemed more focused on his pain relief and chemo than nutrition and weight gain. Thanks.
Just_Jill, has been on enzymes for both stomach and pancreas for months. Not helping. They even decided the pain meds are not absorbing either. trying new drugs and pain block, and he just started chemo now once a week. Don’t know the drug and we don’t care what it is called, just trust the doc to do the right thing. I don’t know what a TPN is Marions. I feel that this new oncologist is trying new things and we feel good about switching oncologists although the old one was alittle angry we dumped. Good man, but we just needed one that has had more cases of this cancer.
My husband can’t work again , even if he wanted to. We applid for soc sec diability and he didn’t qualify. Something about you had to have worked full time for a period of time across 10 years or something. Well my husband worked partime across maybe 4 years and hadn’t worked in the last year so they said we are not missing an income. True , but we even said that with all the medical bills on top of my salary, we can’t afford it. THey still wouldn’t compensate for it. So have learned that you have to have had a full time job in the past 10 years to qualify. Bummer for us!!! I am in huge financial debt and now he is withering away on top of it.
thanks bellavega, yes he has tried a variet of meds. The anxiety pills actually are not an issue, it is really what is causing his pain, cause he is on too many pain meds after 6 months after surgery. Hopefully surgeon will have insight tomorrow. thanks.
to DPB2011 Wow, I feel for you. My husband is only 51. When his cc was discovered he was 230 lbs, nice! and now he is 155, he is bones, weak, his pain continues to increase weekly and it is 6 months after his major surgery to remove tumor and do whipple operation. He has deteriorated ever since bu this scans and labs show nothing. They have him so pain drugged it is like you are covering up something that has gone wrong cause you don’t know what is wrong. We are furious. We will meet with surgeon on Tues and Onc on Wed and then decide what is wrong and if he needs nerve block. I know how you feel seeing our dad weak and skiny. My husband was HOT before, great muscular body and all the women were attracted to him BUT after this cc. He is a bone, like a 100 year old man in a convalescent center, weak, voice weak, holds his stomach when walking, you can see the pain in his face and as he walks every second. I have been seeing this for 6 months now and it is draining. This cancer takes its toll differently on every single person. I have tried to find the exact same case in other people and something , either symptoms, or treatments or something, never is the same. I feel for you terribly as all I think about is raising two kids myself someday and how much I hate the thought of that, and the house and pool and yard and I work full time. I also have thought if this is gonna take him, do it now then drag it out two years, it is draining on everyone and it is grueling on him!! Now he is not eating well due to pain increasing. Hang in there . My husband said he never wanted another surgery after the first HUGE one, but you know, if they have to go in and see what is wrong, I want them to do it. Cause the suffering every day is awful !!!! Keep us posted and have faith, they just may figure things out. This is the one place, this site, wher eyou can yell and scream and write down your tears, cuase in the real world we are trying to hold ourselves together all the time and not fall apart. It is not good for the sick person to see us fall apart or our kids. Anything can set us off, just a kind word or hug from someone and all of a sudden we are a basket case…just know knowing what is next, when will it get better. It sucks HUGE! But so many people have success, or good news or stories that are promising to everyone. My dad just died unexpectedly in his sleep, reading a book in a chair last month. It was not his time, he was in good health mental and physical so I have learned, live each day to the fullest, never miss an opportunity to share stories and memories and say I love you to people!!!
My husband has the rigors infrequently but no one ever said what it was from and he hasn’t had them in about 2 weeks now. He may only have gotten it 2 times a week before. Incontrollable shaking and teeth chattering. So scary. This whole cc thing is a nightmare. My husband gets worse every week and worse pain added and you tell ALL the docs and they are clueless. I hope the surgeon appt next week is of help.
Jtoro, Gosh I feel for you. I come home every day from work and see my husband looking like he is dying, holding his stomach, pain worse every day, never gaining a pound, looking like a walking skeleton and 50 (looks like a 90 yr old man) and kids want me, and house is a mess, and stuff to do and I’m torn in every direction on top of seeing him so deteriorated. here is my beef, we have told all the doctors, gastro, onc, surgeon, etc that the pain is worse daily, SOMETHING IS WRONG and he is NOT getting better but worse over last 3 months. Nothing showed in scans or labs, pain pills going in like candy, I am going to be furious if they find something they ignored that is killing him behind the scenes. They all agreed he needed to see the surgeon and for two months called to get an appt. They had no urgency. We are furious. Granted we believe he is the best, and busy and we have no interest to find another one BUT you need to stay positive, your mind is a powerful thing. Your doctors are happy with where you are in your treatment, praise that as many don’t get those results. I have an email of someone who has been living years with tumors in her that never change and she is enjoying her life and put cc in the back of her mind. Anything can happen with your condition, in a positive way. There have been no two exact cases between anyone that I have found and you can’t read any comment and think you will follow the same path. Pray, live every day to the fullest and only look forward to TOMORROW and thank God for good test results. Her is the email to the person you may want to talk to that is living with tumors that just maintain. Kristin and her email is thesneedle@yahoo.com. As a caregiver, I’m sick to my stomach every day to what is going on and how I’m DOING IT ALL and he is so sick, but I have kids that need to stay positive and not feel the way I do. Stay positive for your kids, because I know school is rough and home stress on top of it can greatly affect their work at school. Hang in there.
He only gets to the dye not the barium. He may have had a few issues with barium in the past, but that is not the method they want with him. I was thinking maybe they could tell him to take nausea pills prior. We shall see. Thank goodness it is only every 3 months!
Wow, I don’t know what to say. Can’t image one saying you have a tumor and then it doesn’t show up for oncologist. Seems like you need more opinions but also your husband doesn’t want to pursue. I wish you the best. It sounds like your husband is accepting his path and dosn’t want to fight? Is this the case? If you had catscan and bloodwork, maybe you can send it to someone else. My husband had an ERCP for a blockage and that is when they found the tumor in his bile duct. Things went downhill from there and led to surgery. I guess if you do some research you may be able to find the doctor in your area that is most experiences with transplants or resections and “whipple” operations. That is a start to find the expert.
