I reread my post about the wonderful surgey to open the scar tissue in my husbands esopaghus this past summer. the surgeon at MSK said the opening was normal and we were done..Little did we know that this would become as bad a journey as the cancer treatments. 2 weeks after that surgery he went for a barium swallow and the stricture had reclosed the opening, back to MSK 3 more times. Then our local cacer center continued to dilate every 2 weeks.he was able to eat cream soups but nothing lumpy. In mid- september the dilation wire slipped and puncured the scar tissue.(He was put in the hospital for 2 days-preventive-antibiotics). 3 weeks later another dilation but now going thru the peg tube up. he has had 2 and can barely swallow his silaiva. The surgeon is going to do them weekly and hopes the sticture will give up and stay open. He refuses to go back to MSK. My husband asked him this past wednesday if he would be able to eat at Thanksgiving- All he talks about is mashed potatos and gravy. The doctor says he will never eat normally and then Gil says but will I be able to do small bites and the doctor says maybe.
My heart is breaking. he is physically back to normal- working part time and has gained 20 of the 60+ pounds he lost. Mentally I feel he is clinically depressed. He refuses to go anywhere or even have friends come over. He is tied to feeding thru the peg every 4 hours. He says if he had known this would happen he wouldn't have had the treatments. He feels he has no quality of life. Every night from 6pm on he sits in the kitchen and watches tv with his head in his hands..I have spoken to the doctors with my concerns . They talk to him and offer help. Around the doctors and in the hospital he is charming and upbeat and of course refuses everthing. I have used all my social worker skills to no avail. It is difficult for me to eat around him because I feel so guilty. He is a good sport but I just can't. Last night I made a meatloaf. He tried really creamy mashed potato and almost pureed meat loaf- the tiniest bit- He couldn't swallow. He began to cry and ran from the kitchen saying he had ruined my life and hated his life. I told him he was my life.All the caring things:How he has his mind,speech, hearing and physical abilities.
I am telling you this because I can't stop crying . I don't know what to do. He has closed off and I love him and gladly accept this new normal.
On 11/7 we get the results of his 1st after treatment (7 months)full body PET scan. he has had cat scans and sees the RO,ENT and MO and they can't see or feel any thing abnormal. I am beside my self with worry. Will he ever accept the fact that he may only be able to eat through the PEG and maybe icecream? What if the cancer comes back?