I checked and he's not taking fentanyl or ambien. I think I will ask the pharmacist for a full list as there are so many bottles right now and I do think this needs to be addressed.

He called his son and asked for the truck keys so he could go buy cake. son calls me and I said I have frozen cupcakes, I go get one out of the freezer for him. I give it to him. I don't want it, I just threw up. ok.

He is not eating. He said he had a yogurt yesterday. I said are you using the drip or feeding tube? Neither. Yogurt is enough and I've only done this for 2 days...no food. We are talking a tiny container of yogurt here. I will be contacting the nutritionist tomorrow for sure now. I can tell he's lost more weight just in the past 2 days and his skin coloring is not good.

ETA. talked to pharmacist who is a friend and she couldn't tell me specific meds but said I had not picked up any prescriptions for him for a month. so we can cross that off most likely

I got called a drill sargeant! I asked if he felt like --it yet because he should. He said little pain but extremely exhausted. I said 1. that's normal 2. you could do something about it by putting nutrition into your body.

i asked how much water he was drinking....he had a bottle he said he keeps refilling but I have not seen him go to the bathroom for a couple of days though he could have but rarely if he has.

he will not use the feeding tube. He asked for cake so I got a frozen cupcake for him and he wanted milk so I got that. He said he has kept some food down but I cannot imagine other than yogurt what it would be since yogurt and cheesecake are the only foods he bought. I have healthy stuff he couldn't nor wouldn't eat.

Pharmacist heard just one of the incidents and told me to call the doctor tomorrow or take him to the ER here. I won't deal with hospital here unless it was an absolute emergency. I'm calling nutritionist in the morning and going to ask her how long she wants to let this go on. I'm already taking a friend to the doctor in the same area tomorrow.

Call the Dr. If he keeps this up he will end up in the hospital again. You mention that he takes lots of depression meds. Could any of these be causing adverse reactions to his other meds? Do you know that he is taking anything properly? In his state of mind he may be forgetting to take something or taking too much. If he is not taking the depression meds this could cause some mental issues, you usually need to taper off these. It may be time for you and your kids to buck up and take control of his medication. None of this is normal. At any rate, a doctor call is in order. Hugs.

thanks Denise.

He seems somewhat on top of things this last time I talked to him but it comes and goes. My son said it's like alzheimers and I said unfortunately it is. Lucid one minute completely foggy the next.

I looked around the room. 1 feeding tube bottle used since I took out the trash on Wednesday morning so it's more than 2 days of no nutrition like he tried to convince me.

I will talk to nutritionist tomorrow and get the low down on these meds and what he should be taking and when.

Slightly in his defense, I'll point out that when you get that tired and miserable, food isn't at all appealing. You don't want to eat ... so you get worse ... so you continue to not want to eat. I've had other illnesses long-term that had this effect, not just cancer treatments, and it stinks. (Between that and having kids, my weight has bounced like a ball on the moon since I got married ... sigh ... how anyone can be that sick while pregnant and still gain fifty pounds I will never grasp.) I think I hit 180 at one point, during pregnancy. Right now, I'm 115 due to nutrition struggles. For my height, that's ridiculously underweight. 'Normal' for me should be around 130, and I've been all around that up and down and sideways since this cancer stuff. (One doc tried to help with a depression med that increased appetite ... it worked, and then it WORKED, and we had to stop it!) I'm the size I was in high school. If I was still in treatment with radiation and chemo, this would be probably worth hospitalizing me over. If this is what your husband is doing, get him help. He's not going to be able to self-motivate ... his temperament isn't suited to it from what you tell us, and mentally he's not there right now, and physically he's not there either. (Sorry Christine ... I did try to keep up calories during treatment but me and that tube and the formula they gave me never did quite agree with each other! Connie, it's why I really advocate what she says to everybody else ... I couldn't do it, and paid for it.) Depression and food issues spiral down; they aren't self-fixing, especially if he's not in any kind of therapy (which I'll assume he's not, or if it he is, probably not following strict directions). I hate to suggest you get him back in the hospital, because I know that's a pain for you to have to deal with ... but it's probably what he needs, if your nutritionist doesn't make house calls. (Our formula delivery person was a nurse and checked in once in a blue moon. Not sure given your distance if you are getting that support.)

There is no one keeping tabs on him from the medical community until 4 weeks from now when he gets a CT scan. We are an hour from the cancer center and 45 minutes from the hospital.

I'm just as worried about the lack of fluids as the food issue. It's unbelievable that he has had little pain. He said it's a 2 on a scale of 1 to 10 at the worst 3-4. The difference in him after the IV fluids was always amazing and he knows that. They preached to him (docs, nurses, etc) that his healing is dependant on him complying and getting the fluids and nutrition in his body. This fact alone makes me wonder if he comprehended what they were saying or if he even realizes how little he is taking in. Hard to say.

I'm thinking of having the nutritionist call him as he has a bit of a voice right now and could probably talk/listen to her. He's not going to listen to me but maybe just maybe he might listen to her?


ETA: he ate the cheesecake, another yogurt. small steps.......

Well, that's good on the food! And some people do have an amazing pain resistance. Maybe he got lucky on that one. It's possible?

((hugs))

the lack of pain has surprised all the med people. He is not very tolerant about sickness so surprising that he has had little pain in his mouth. He really complained in the very beginning but has been so focused on that feeding tube issue the whole time that the mouth stuff was the least of his problems.

Connie, even though your husbands first appointment with his medical team is at the 4 week post rads point, the team is still there 24/7 if there are any issues that come up. Dont hesitate to call for any changes you notice. His recent behavior should be passed along to his medical team. It could be the sign of some other ailment or medicine reaction?
At the very least by calling this in, you would be able to know what is normal and what else to watch for or if this would be necessary for his team to check on. I always err on the side of caution, if for no other reason than to ease your mind and know he really is ok and not a danger to himself or others. Most patients will have ups and downs (especially the first month post rads) and setbacks during their recovery. Almost every patient gets frustrated at the pace of their recovery. Patients can never get well as fast as they think they should. Unfortunately it takes 2 long years to be completely recovered! If your husband has not yet seen anyone to talk about his cancer to he really should so he can get some help in coming to terms with everything he has been thru. From what you've said, this probably will not happen but its worth a shot. If someone from his medical team recommends it, maybe he would cooperate? As far as the recovery phase goes, my doc explained to me its one month of recovery for every week of rads, but then it still takes more time for patients to regain their full sense of taste and saliva function. The sense of taste and saliva (excessive dry mouth) are what takes the longest to bounce back, patients report noticing improvements with them even around their 2 year post rads mark. During recovery its easy to lose track of time as most patients are so fatigued they sleep most of the day, especially the first month post rads. On a daily basis its not easy to know what day it is or if its night or day without looking outside.

Since your husbands behavior is so bizarre, I suggest calling his doc or even talking with his nurses. Do you know if your husband is on the fentanyl patch? If you dont know what meds hes taking, check with his medical team. My concern is he is not taking his medications as they are intended to be taken. Patients who are "out of it" should NOT be in charge of taking their own medicines without someone overseeing this. You should probably count his meds (if they're in pill form) first thing in the morning and check back at the end of the day to see what hes taking. For liquids, every morning pay attention to how much is in the bottle then check it at the end of the day to see what he is taking. Im sure your husband will NOT be happy being watched but for his own safety someone needs to monitor his meds. Maybe his meds should be visible like sitting out on the kitchen counter so he takes them in front of you or others in the household. Back when I was going thru rads and recovery, I made a little chart and wrote in the time I took what medication so Id know when it was ok to take another dose. I also kept a list of the time and date I changed the fentanyl patch. Previously I mentioned about following every single direction for the patch, patients who arent careful can easily (and innocently) create a very serious problem by the patch releasing too much medication which could cause an overdose. Even something as simple as putting the patch in a different place every time its changed could be a potential problem for the patient.

Please let us know how you make out with this!!! We all care and are concerned about both you and your husband.


@KristenS... Sorry that I am such a nag about intake!!! It really is THAT important. I nag because I hate seeing anyone struggle thru their treatments when its within their control to change the path they're on simply by increasing their daily calories, taking in more water, or by getting a couple bags of extra fluids every few days. I suffered far more than I should have and it hurts my heart seeing anyone else follow that same path. Almost all OC patients struggle to take in the recommended daily minimums. Most of us are lucky to hit even 1500 calories a day. BUT!!!! Those patients who can come close or exceed the minimums are the ones who have an easier time of things. During rads its not only the no appetite that impacts patients intake... everything tastes horrible. For me everything I ate or drank tasted like it was burnt, even water! My throat was so sore and I had mouth sores which hurt so bad, even talking was agony. I have no doubt every single one of us patients puts a significant effort into trying to eat and drink. Patients with feeding tubes struggle just as much as those who dont have one. Usually the nausea and difficulty tolerating the different formulas is a relatively easy fix. Slowing down the intake speed and/or watering down the formula is what works for almost every patient. Other patients will need to try out a few different formulas before they find the right fit.

[quote=ChristineB]


@KristenS... Sorry that I am such a nag about intake!!! It really is THAT important. I nag because I hate seeing anyone struggle thru their treatments when its within their control to change the path they're on simply by increasing their daily calories, taking in more water, or by getting a couple bags of extra fluids every few days. I suffered far more than I should have and it hurts my heart seeing anyone else follow that same path. Almost all OC patients struggle to take in the recommended daily minimums. Most of us are lucky to hit even 1500 calories a day. BUT!!!! Those patients who can come close or exceed the minimums are the ones who have an easier time of things. During rads its not only the no appetite that impacts patients intake... everything tastes horrible. For me everything I ate or drank tasted like it was burnt, even water! My throat was so sore and I had mouth sores which hurt so bad, even talking was agony. I have no doubt every single one of us patients puts a significant effort into trying to eat and drink. Patients with feeding tubes struggle just as much as those who dont have one. Usually the nausea and difficulty tolerating the different formulas is a relatively easy fix. Slowing down the intake speed and/or watering down the formula is what works for almost every patient. Other patients will need to try out a few different formulas before they find the right fit. [/quote]

You may notice I back you up every time you do ...or if I post first, I tell them someone cool will be along to post soon about all the things to do. This is WHY ... because you are RIGHT. Actually, I'm not sure I could have taken in that total calorie count anyway, but I had other complications (my biography should just be titled "Complications" LOL) and it didn't happen. But it's GOOD to know what to aim for, because that information isn't available in other places, or not as clearly. This site saves lives, simple as that, and your advice, and Brian and Paul and all the other long-timers ... you save lives.

well, he ended up in the ER. After telling the nutritionist of some of his odd behaviors, rad doc said go to the ER. hours later, he is admitted. I had to leave as my allergies were getting riled up plus I was tired. The nurse called as I was driving home from my second trip to Des Moines today (4 hours total driving!) to ask me questions since talking is difficult for husband. It was good to relay how long this has been going on and tell them how little food he has taken in over the last week...virtually nothing liquid or solid. I asked if they would teach him how to use that drip system with his feeding tube. We were just trying to figure it out when the doc's office called and said take him in so that's on the agenda tomorrow.

He wasn't as dehydrated as they expected but definitely enough to warrant an overnight stay. They are going to decide in the morning whether to do a scan on his brain or wait and see if hydration and nutrition in his body is enough.I truly think the nutrition or lack of it is the real problem. He did tell them he was seeing things and was delusional plus he was having tremors. Why is he so stubborn? He always thinks the rules do not apply to him and he wants to get to the front of the line as fast as possible. He's tried this behavior all through treatment and it only gets him in trouble.

I love this hospital/cancer center though. So glad we couldn't use our local hospital on so many levels. I would rather drive an hour each way and get the care he is getting in Des Moines.