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Denise96 - I totally "get" it. My hubs and yours sound like they have same attitude- stubborness. Their way or no way in some things. My husband's been on oxy for over 37 years and xanax for prob 25 yrs so you can imagine when first time he became unresponsive the xanax was taken away because it surpresses the system as does the oxy which was lessened to 5mgs 4 x day which is nothing compared to his taking over 100 mgs a day (not prescribed that way and of course would run out but there' always acquaintenaces.) He was in ICU to be carefully watched even after the intubation was taken out. He still craves for xanax after 2 years not being prescribed and he finds other ways to get it. I have a PTSD over finding him that many times unresponsive and am driving myself crazy with fear that he'll die from doing something stupid before Cancer gets him. Your husband will probably say no to this, but he really should get a feeding tube. It's no big deal and they get the nutrition they need. My husband wasn't able to always eat the pureed food as he would choke. Even now his throat has narrowed so much from the radiation, he may eat Yoplait yogurt (nothing greek cuz too thick). He was drinking "Gutzy". It's an adult pouch thats loaded with juice and veggies but he now just sticks with IsoSource by Nestle's which he puts in his feeding tube. I think he's afraid to put anything down his throat after having a recent Barrium Swallow test I was allowed to watch and saw how some foods would be very slow getting down because of the narrowing of his throat and only would move down after drinking something. When he was having the laryngectomy the cancer was very invasive and they cut into a nerve and also some of his back left tongue which caused his left side of throat area without feeling. We are now in process of getting a Speech Thereapist specialized in tongue exercises to get his tongue to move more in order to be a candidate for a TEP which is a device they'd place in throat that when he goes to talk will vibrate his muscles and sound will come out. Unfortuneately, we are not even sure if this will come to fruition. It is so sad. I pray daily the cancer has not and will not come back. He's being scheduled for a PET Scan as of this past Friday; However, that scan was to already have been done, but someone at the Boston hospital dropped the ball and never set it up after 4 months. We just learned of this on Friday. I figured he'd find out tomorrow as we were scheduled to see his Oncologist in BOS but they canceled because there isn't a PET scan. I've decided to live one day at a time and think of only the positives. My husband has a sense of humor even without talking and it's also a gift to keep his spirits lifted. The best gift is our daughter gave birth this past July to a beautiful baby boy named Roman and he is definitely the Best Medicine for both of us. I'm happy to write and answer any questions as we both are going through some similar problems. My very best to you Denise and your hubs. - Betsy (Betsc)
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Thanks for your answer. Yes, my husband is very stubborn. Says he wants to help himself, but balks at most foods I mention. He wanted campbells chicken noodle soup today. I asked him if wanted some oyster crackers to put in the soup and he said,"No. Crackers are dry." I said not if they are in your soup. Well he said the does not like crackers. So i said, OK. We have boost but he does not want it. We have vanilla pudding in the little cups and jello in the little cups. No, he does not want any of that. I made him milkshakes but after two, he did not want anymore. The ice cream got old, so I threw it out. I suggested plain rice or mashed potatoes with butter and he just looked at me like I was nuts and rolled his eyes. What the heck does he want? Wish I Knew. He is about to run out of his oxycodone on Tuesday. He should have enough until next monday when he will get them refilled. I am the one that gives them to him, and I did give him like 8 extra when he asked for them, but there still should be more. He insists that he does not know where I put them, but I don't believe him. He has lied about this before. His xanax has been gone. His oxycodones are 20 mg a pill. He is supposed to take them 4 a day. He has no more oxycontin and said he is not going to get them refilled because they cost him 90.00. This tells me that he did not want them for pain but for the high. If they were cheaper, he would still get them. Like you, I worry he will pass from all the drugs in his system before the cancer ends it. I know he has someone getting him pills. The other day he showed me a jar of medical marijuana someone had given him. He may have traded some oxycodones for the marijuana. I will never know. And believe it or not, he used to a drug/alcohol counselor. So, he knows about drugs. Way back before i met him, he was a big pill popper. We did not get married until we were both early 40's. I am 69 now and he is 68. This pill problem has been going on for years. Plus he used to drink a lot of beer. He was a functional alcoholic. But he had to quit drinking beer early last year as it began to bother his stomach. I am tired of worrying about the pills, etc. My husband should be eating thickened foods as he does have trouble swallowing some things. When he was in the hospital last month, they were thickening his liquids and he would not drink them. He hardly ate any of the food. Said it was crap. They wanted him to eat thickened food and drink the thickened liquids but he refused. But he pretty much sticks to noodles. He would never agree to a feeding tube. I already mentioned it and he said NO. He is supposed to use a bipap at night to help push out the co2 but he refused. The doctors are getting a little tired of him. So am I. lol When does your husband get his pet scan? Joe is having a brain mri on this coming thursday. This was also to be done 2 months ago, but because we were too early for the last one, he refused to wait. Then they were going to do it while he was in the hospital in december, but they never did. Probably because he signed the AMA release form 3 days after he got there. As I have said before, he is his own worst enemy. Congratulations on your new grandson. NOthing brings a smile to the face like a baby. I have no grandchildren because neither one of my boys have children. My oldest son is married to an oncologist nurse and neither of them wanted children. My youngest is 40 and is living with a girl who is 45 and already raised 3 boys. She is a little old to be having babies. It is nice to be able to share our days and problems with someone who understands. You mentioned Boston, so do you live in MA? I live in pennsylvania and we are about an hour from Pittsburgh. Talk to you soon. Have a good day!