Out of energy

illead said:

Steps

At least it sounds like his steps are going forward, even if it's just a teeny bit, it's something.  Tell him that chemo did not shorten his life, it gave him life.

Hang in there Katz, Becky

Thanks, Becky. He doesn't think he has much of a life. That's what he complains about daily is he has no quality of life. I keep reminding him how lucky he is not be in a hospital hooked up to tubes to which he says he will be 'shortly'. I kind of pursuaded him to get a haircut today.. first since before the transplant 6 months ago. He said he's bald on top and I told him he's been like that for years. Why not shave it off?  Hates looking at himself. Classic depression. He wanted to come into the city today to meet for lunch but his energy dropped and he stayed in his neighborhood. I told him it was too cold anyway but he was disappointed. He lost feeling in his feet since the chemo and the docs are saying it's nerve damage and may or may not come back. i had nerve damage twice in my neck that made my fingers numb and it took 9 months to come back so I know it's a slow process. i called a local acupuncture group which seemed to have a lot of positive reviews just to see if they could help him. The woman there knew what I was talking about and said sometimes the treatments work to a degree and sometimes not. I guess my thinking is that if it helps by 50% then that's better than 0% and what is the downside? My brother said he would call (after the spiel about how hard it is to park in that area). See what they say. I hope to have coffee with him on Sunday morning in the supermarket and we go on. Have a good weekend!  Thanks for listening!

dkatz said:

Out of Energy

So, on the spur of the moment I called an acupuncturist to see if they could help my brother with his chemo-induced neuropathy in his feet. The person I spoke to knew exactly what I was talking about. I spoke with my brother thereafter and suggested he call and see if this is something he wants to explore. So he calls and makes an appointment and then tells me that parking near this place is virtually non-existant. So, why make the appointment? So, he finds another place presumably with parking and goes. He just phoned me to say the accupunturist told him he looks sick and is probably dehydrated. His skin color is off. Has no idea if treatments will help him. Well, that's all my brother had to hear and he's back to dying again. He knows he's going to die. He knows the doc has no idea what he's doing. Even when they told him his blood counts are within the norm he knows they are off. Nobody cares about him and on and on. He'd rather not see me tomorrow. Maybe he'll call the hospital again but they're not doing anything for him anyway. His doc never talks to him and what's the point in changing doctors; they have no idea what they're doing anyway. Very nice but phoney and they just administer powerful drugs and go to lunch. So, what's the point because the end is near anyway. And he can't volunteer and he can't walk and he had nothing to eat yesterday and it goes on and on and on. Just venting, that's all. I can't say that he's making all this up. But the depression and the negativity.. boy oh boy. Everything is 'no' and 'no good'. A man who he never met before in his life who is licensed to put needles in the skin to activate the spirits in the body is apparently more knowlegable that doctors at Sloane Kettering who have been following him for 9 months. I'm just shaking my head..

Well. the treatment with the acupuncturist seems to have had a temporary effect on the numbness and I think he may go back for a few more visits. He said the acupuncturist said that sometimes treatments work and sometimes not which is at least honest. After the treatment, he called the hospital and the nurse (again) told him he has to drink a lot of water. He's been told this before but my brother believes it's not normal to have to drink so much and it makes him urinate a lot. Fact is it's not normal to sustain the trauma caused by chemo. So, he's been inconsistant about hydrating himself. But.. he promised to drink more water and hopefully he'll stick to it. I told him that he told me that he's been told several times that dehydration can cause lethargy and even depression.The nurse (again) recommended he talk to a psych and he (very reluctantly) agreed.The point I made was that there could be a slight imbalance in brain chemistry and if nothing else, it may be good to talk to someone about what his fears are. He's 'not happy' about taking drugs to feel good. I told him I don't think they would just give you drugs to feel good. It's a little more involved than that. May not give him drugs at all. So.. he sort of said he would go. One small step at a time.

jimwins said:

Hey Dkatz

Thanks for the updates.  I'm glad the accupuncture seems to have helped.  That's interesting about the dehydration - I didn't know that.  Maybe I should drink more water myself . Hope things continue to improve!

The 'improvement' didn't last too long. On New Year's Eve, I got off work early and went out to see my brother rather than run home. He was not in a good frame of mind when he met me at the train station and wanted to go back to his apartment rather than go out for something to eat. He repeated over and over again about how tired he was. 'OK'; let's go back to your apartment and we'll eat something there. His mood was very low and he mentioned that he would never get better and he should be better by now and on and on. I told him I would drive out to see him on New Year's Day and then go visit with mom. He was waffling.. 'you don't have to come'. Which means he is so sad that he wants to be alone. Next day, he agreed to have me visit. I came over before noon and suggested we go out to eat. He immediately replied with 'I'm not hungry but I'll force myself to eat'. It was a very cold day and I had to park quite a distance (maybe a quarter mile) from his apartment and I offered to get the car and pick him up at the entrance. But, he insisted on walking; hands thrust in his pocket. Baby steps and stopping telling me at every opportunity that he was too tired and this isn't normal and he's never going to get better. He finally walked nealry the whole way to the car and asked me to go the rest of the way and pick him up on the corner, which I did. I drove up and he gets into the car and he announces that he got emotional. I didn't even respond to that and just asked him which way to the local diner. We drove by 2 crowded diners and he headed to the pizza shop he likes. I parked the car on a side street and helped him out. He started crying again. The pizza shop is half way down a long block and I walked ahead. It was closed. He says, 'we can eat a muffin in my house'. Right then and there, I spot a sandwhich shop with a huge OPEN sign lit up. I check the menu and suggest the place. He says, 'it's probably closed'. Yes.. two inches from his face is a 2 foot neon OPEN sign. We go in and it's a nice relief from the cold. He settles on a grilled cheese and tomato and I ordered a roast  beef sanwhich. I suggested that he go there for a meal now and then even alone. 'Maybe'. He ate the entire sandwhich. He's not a child and I say nothing to him to encourage him; he just eats it so he must have had some appetite. We're done and I drive him back to his apartment. He 'definitely' does not want to go to mom's house. He wants to be alone. So I say my goodbyes and drive off.  That night, about 9:45 he calls me. It's rare that he calls me at night. His voice is odd. He blurts out: 'did you come over today?' 'I fell asleep in the recliner and when I woke up I couldn't remember anything'. Then the bomb: He says: 'I thought I died'. 'I don't have much longer'. 'This is no way to live'. So, I answered him calmly: 'Yes, we had lunch. We went to the sandwhich shop and you had grilled cheese and tomato and I had roast beef.' The there is a pause and he answers: 'Oh, yeah'. 'Was that today?'  'Yes.. it was today'. Then he launched into his spiel about how he's not going to make it. Forgive me but after this tirade that went on and on I told him to get into bed and wait for the end. The I felt horrible about saying that and added..'you're going to have a long wait. After some time, he said he may have had a seizure and that made sense. He suffers from a form of epilepsy that induces a mild seizure in times of stress. Last time this happened was before he was diagnosed and had an intestinal blockage. He called me up and forgot that I went with him earlier that dayu for a colonoscopy. I called 911 for him. So I asked him if he needs to go to the hospital and he said 'no'. So I said..'then either you call the hospital now or call in the morning. He said he felt better talking to me and it all came back. He apologized about 10 times which drives me nuts. I didn't sleep well that night but decided not to panic. The next morning he called me at my office and said he was sorry to have bothered me. I asked him if was planning on calling his doctor. 'Nah.. they can't help me'. So, I said OK and then I called his doctor. She's out of the country and I spoke to his nurse. She said..'your brother jsut called me but he didn't say anything about a seizure.' It seems he omitted the panic attack. So, I filled her in. She called him back and later called me back and said she was trying to work in an appointment for a psych eval the same day as his re-check with his kidney specialist. I expressed my concern that he was physically and emotionally exhausted. He is resistant to drinking enough water. I have no idea if he's taking his meds properly. I can't be with him all the time. He refuses to hire anyoen to live with him as a caregiver. Later, my brother calls me and asks me if I called the nurse and I said..'yes, I did'. I told her the whole story. 'Sue me'. I expected him to be pissed off but he wasn't. He just said OK, I appreciate it. Thanks for being there. I realized that he couldn't make a decision about what to do so he made me so crazy with concern that I made the call. Funny thing is that he called before me but instead of giving the nurse the details about his siezure and panic, he pleaded with her to tell him when he's going to feel better. He seems to have gotten it in his head that 6 months after his transplant, he would be dancing the Irish jig. It's now 6 months and there is no dancing. So, for the umpteenth time, the nurse told him (as he recounted to me) that it can take a year and he is experiencing a lot of common reactions to the chemo. As a result of all of this, he told me that he 'feels better'. 'Thanks for being there'. Then, he told me he was going out to get coffee at Panera's and go to the library to go on line and take a book out for mom. I had to get this whole story out of my system and share it.  I tell him every day that 'every day is a gift'. Every day, the balckboard is fresh and you get to write your own story. I try. He's tired and I guess so am I.

NANCYL1 said:

OUT OF ENERGY

Hello Dkatz:

I have read a number of times that Chemo can affect short-term memory on a temporary basis  Perhaps you know this.  Maybe not helpful to tell your brother.

Nancy

My brother has very, very reluctantly agreed to talk to a pshyciatrist at the hospital about his depression. But.. he already knows that it's a waste of time and he doesn't want to take any pills. His doc's nurse got him an appointment on Monday same day as the appointment to see his Nephrologist about the results from his surgery last month. His chief concern is that the appointments are late in the afternoon and he wants to be home at 6pm and not out and about. He's just pissed off about everything and is convinced that no one cares. Everything is a waste of time. He's trying to draw me into a debate about whether or not to go and all I keep saying is that it's 'your call' but maybe the notion that it'll be a waste of time is wrong. He's in a dark place right now and told me earlier 'can't do anything he wants to do'. He does not want to see me tomorrow and I'm not going to go against his wishes. He's going to prove that he's 'open-minded' by going to the psych but it's a set up to failure. I guess we'll see what happens. One thing.. the effects of the chemo is not 'made up' it's just adding to a personality that has a long history of negativity and that's making his recovery that much more difficult.