5 years post diagnosis… but bad news…

Marlene,
I too am sorry your husband is having such a hard time. I would also recommend getting a second opinion. Metal stents are permanent as Lainey indicated. I’ve never heard of them being removed. I agree with Lainey that things sound kind of strange. We’ve both been involved with this disease for a long time and are experienced with dealing with difficult situations and Drs. I hope you get some answers soon.
My Tom is doing much better right now. It will be 2 weeks on Weds since he was hospitalized and I had to drive to Columbus! It’s been wonderful. His color is better and he is gaining back some weight. Also the swelling in his abdomen has really improved, which is good news. He has to have his esophagus scoped on Weds in Canton, then is getting a chemo treatment on Monday in Columbus. We’re just hoping it doesn’t wipe his blood count out. I think the infection and chemo together were the culprits last time but the infection is gone now so hopefully he tolerates things a little better. Thanks Lainey for your kind words!! You are a great help to so many on here. Take care, Mary

Hi friends,
I feel like I need to write a book about the past few weeks but I don’t have time and I am lousy at typing! I will keep it short and sweet. He had his biopsy on Thurs. Sept !. Friday night in the middle of the night he woke me up because he was vomiting blood. I rushed him to our local hospital where they admitted him to the ICU. He was bleeding from his esophageal varices so they banded them, gave him a buch of blood and watched him for a day or so. He started getting very confused and agitated which they blamed on ICU psychosis but after he went to a regular room and continued to get worse they found his ammonia levels were high. They treated him for that with lactulose, a laxative, and he got better quickly and came home on Thurs, the 7th. He was doing pretty well so we went down to see about starting the clinical trial on Tues the 12th but his biopsy came back inconclusive so he didn’t qualify and started chemo instead. ( His recurrence is around his duodenum not in his liver, he has lesions in his liver but obviously they aren’t cancer). He felt lousy on Weds, went to a followup appt with his Doc that fixed the varices locally, came home and crashed on the couch. I checked his temp about an hour later because he was freezing and it was 103.8. I rushed him to Columbus and they found he was septic with bacteria in his blood and bile. They changed his bili drain and started IV antibiotics, almost admitted him to the ICU there because his blood pressure was so low but that got better. Now his blood counts are very low so they are talking about him being there for another week! People ask me how I am and I just say I am along for the ride. I feel like our lives are completely out of our control. I just have to go along with the flow and that drives me crazy because I tend to be a bit of a control freak! Lately we have had a ton of people offering to help in any way, I’ve always been reluctant to accept but I accept gladly right now. Things are pretty overwhelming. Last Sat on a beautiful Sept. afternoon almost a hundred people came and helped pick our pumpkins for us. We were in Columbus and our daughter called us in tears when she saw how many had shown up. We cried too. We have the best friends and neighbors in the world!! I hope everyone is hanging in there. That’s all we can do. Take care and thanks again for the love and support on this blog. Mary

Hi Friends,
Today is Tom’s third day home after a lot of “repairs” done on him in the hospital. He feels that he has been tuned up and is ready for another few thousand miles! He had a stent placed in his vena cava. It was being depressed by the duodenal swelling and that was causing the fluid buildup in his legs and belly. That is improving every day so it’s obviously working. He had a stent placed in his duodenum to keep that open so he can eat, although like everyone else he doesn’t care about food. His diet is restricted too so there are things that he wants that he can’t have. He had a new external drain placed in his liver so that is still uncomfortable but seems to be getting better every day too. All in all he is improving, he’s getting grouchy so thats a good sign. He’s frustrated because he sees so much that needs to be done and he can’t do it. He expects everyone to get at things and we all have a different schedule and different priorities. I had to tell him to give me a break the other night. I was exhausted from all of my “chores” and he was getting a little irritated about something and I had enough. I try to be patient and not get irritated myself but like I told him I can’t help what’s happening to him. If I could do something about it I would in a heartbeat but I can’t. We’re just all doing the best we can with the cards we’ve been dealt! He’s always been a great patient and I don’t blame him for getting grouchy. I would be a real pain if it was me! Anyway, I appreciate everyone’s thoughts and prayers and support. I feel a little better about things since he has stabilized but I know we have a tough road ahead. Hopefully he’ll be able to start chemo in about ten days or so. His bloodwork has been good, they’re mainly worried about the swelling in his feet and legs and that is getting better. Thanks again, I’ll stay in touch. Love, Mary