husband's latest radiation journey mood changes

 hi everyone and happy new year. it's been awhile and a busy last month. Rob's pain in his hip and upper back had increased since my last post so we were scheduled for radiation in sudbury Dec. 17/07. when we got there after doing the planning scan, dr. decided that due to having several radiation treatments before we would have to stay for four days of radiation instead of one due to toxic levels. Rob was in pain before we arrived. upon finding this out his stress level escalated and so did his pain level. he absolutely hates being away from home and being so close to xmas made it worse.  i may have this wrong, can't remember what doc said but i believe it was this: Rob's left hip was the worst due to some type of bone growth that was pressing on nerves. he gave us the name but by then i had forgotten my note book in the car which was parked way off. he radiated his hips for over ten minutes and he immediately felt great relief. unfortunately he had the regular flare up later that night and it has taken roughly 1 1/2 weeks for the pain level to slow down. he still has some pain and he is using 2mg. hydromorphone to control it. he is considering starting chemo in feb. I've noticed two incidents during the holidays that are new and a bit scary. Xmas eve our son, daughter in law and 2 year old grandson slept over. as most 2 year olds go he is into the terrible twos and at times acting out. During one episode my husband starting yelling at him which scared him and my husband's whole face was flaming red right down his neck and his eyes were really dark. this was totally out of character for him. his pain level really rose during and after that.  New Years night we went for dinner to my other daughter's home and again his mood swing was strong, and the pain level went up. once we were half way home he felt better, pain wise and when we got home his pain was almost all gone. Has anyone experienced anything like this. I'm on pins and needles at the idea of having my little grandson over or going to visit family and maybe i'm being selfish, but i resent this. i feel like i'm losing one more thing to this illness. we both love our grandchildren dearly, but i don't want him to remember his visits with rob as yelling and glaring visits. i know i'm wrong, but i'm mad at rob because now this is another part of our life that will be ruined. the look on rob's face scared me. i've never seen him like that before.  I'm also getting so confused with dr. one time we are told that the radiation will help kill the cancer cells, than i read somewhere that it doesn't. could someone please tell me what will kill the cancer. Does anyone know of some men whose cancer is similar to rob's and made it past the 2 or 3 year mark. i feel like i am his nurse not his wife. i don't know how to be his wife anymore. all i seem to do is nag at him to make sure he is taking everything he should, that he rests, etc.. how do you keep treaking when times get tough and keep hoping and praying for a turn around. my faith is hitting rock bottom as is my positive attitude and i find myself just snapping and short of patience then i feel awful for this when i see what he is going through. i want to hold onto some belief that maybe he will be one of the men who will do a turn about, but he seems to be the one whose body fights against every drug we have tried. we both feel like we are running out of options.i find myself quietly resigning myself to the fact that this is how it will be until the end instead of refusing to give up. trying to fight for both of us is tiring. i have tried every angle to get him to dig inside himself and pull out the strength he used to have to fight this to no avail. i'm tired and mad that i'm not enough to make him get angry at this cancer and fight hard to win. if anyone has anything positive please let me know. thanks for listening. lifeline

Dear Lifeline,

You are a real hero for standing up for Rod in this difficult time. You sweetness and compassion come through your words loud and clear.

I cannot offer any advice on Rob's treatment never having been there myself. But I can tell you that your care and love for him are not wasted by any means. We don't always see the results of our words and actions but remember that any word, thought or act of love is never wasted.

Your resentment is a natural thing and not a subject for guilt. It will pass. Beating yourself up for your emotions accomplishes nothing. And your grandson will one day understand why his grandpa was hard to get along with.

Just remember in the difficult times that you have our love and care here on the forum. Please stay with us...

Jim

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Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.

Lifeline -
I'm so sorry to hear things have gotten so tough for you both. You are doing the best you can. Your words are so heartfelt, I admire you for putting yourself out there and sharing this with us. It seems every day brings you a new trial, a situation you've not been in before and when you're so stressed and frightened there's very little to fall back on. This disease is scary and honest to God I wish I could say some wise words to make it easier...we all do.

I'm not very helpful as far as treatments are concerned but I know others here are and will post as soon as they see this. It's a little slow on the weekend.

Please read Jim's post again - it's very important.

Stay in touch with us,
Susan

I've been trying to email you and I keep getting it returned. I'm using the em you have posted in your profile.
Do you still have my personal email? Let me know on here, please.

To the top for lifeline

Lifeline,

You and your family are in my prayers. These are some very frightening times for Rob. His whole life is slowly moving past his mind like a constantly looping tape. His anger and frustration (and yours) is part of the normal process. I did not say it is acceptable when it affects the whole family severely. Chime up! His right to feel the way he wants does not mean he can take it out on a toddler. It's your right to tell him to chill. I simply said it is part of the normal process.

It goes without say that everyone in the family is being sent on the same journey to watch over Rob. Stay realistic about your capabilities to control your surroundings and accept the limitations but, don't sit back and take anger without ever saying a single word to him when he's gone too far. He may actually benefit from a stern word now and then. Rob needs someone to let him know its okay to live, not like he's dying, but in any way he needs to right now. We humans equate dying with giving up so strongly. They aren't the same thing. He isn't giving up!! Rob is living today. PLease, please, try to enjoy that...God Bless Rob and all of you.

PS: The one thing I can suggest perhaps is for Rob to use a mild anti-anxiety drug, such as valium. Strong enough to help him emotionally some, while still allowing him to function as he is physically able. Please ask his Physciian if something is possible.

Vickie

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   Dear Lifeline & Loved One,

 

Our hearts go out to you and your loved ones.  This is definitely a trying time and words just don’t seem adequate.  Please continue to share your feelings here… it will help you to release some of the pressures that build and it will keep you close to all of us as we try so hard to help with the wobbly stepping-stones.  Our hands reach out and hold on ~ and I hope and pray that you feel the strength from all of us to help you continue to move forward.  We will embrace you both with everything we have and hope it gets you through this rough spot.  Once we are in the dark zone… it is truly hard to break through.  I’m sending a special rainbow… filled with sunshine to help you both find the way back.  Take time to re-group but you need to re-group together.  Talk it through…. It’s amazing what can happen when you both reach toward each other and pull from each other’s strength.  Then you have all of us adding strength to the mix… 

Warm thoughts and gentle hugs filled with sunshine will be here to wrap you up. 

 

The mild anxiety pill that swim mentions is an excellent idea… there’s no reason for him not to do this.  He needs the extra help ~ just do it!

 

Just make sure you stay close…okay… We care and you can lean on all of us.

Thinking of you and keeping you both close.

In Friendship ~ Lee & Buddy

 

*This is your very own Rainbow and it’s sprinkled with Sunshine*

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Directions:

v       Keep this little rainbow close to you

v       Use as often as you need

v       It’s been filled with extra strength to help you through this… pull from all of us!!

v       Knowledge is Power ~ Power takes away the fear!

v       Stop ~ take a nice deep breath…

v       Now ~ continue forward!!!

v       Keep posting!!! and Stay Close

Hey Lifeline,

Hope you are okay...

Jim

  hi everyone and thanks to all of you for your fast response. i'll try to make this short. i don't understand why myself and our kids, grandchildren don't seem to be enough to make rob want to fight. He belongs to a Search and Rescue group here and has been head trainer and very involved for 15 yrs. He amongst others teach the public how to survive if lost and how to help find those who get lost. This past weekend they taught from Fri. evening to Sun. morn. with an overnight outing. He taught Fri. evening didn't get home until 10:00p.m., was up at 5:30 a.m. next morn. and didn't get home until 7:00 p.m that night. Rob takes this course extremely seriously. The group that was taught was nothing but trouble, negativity, and a great source of stress., nothing like the people who normally sign up. He was stressed on Sat. from early a.m. until Sun. noon when it was over. My daughter also helps with this and noticed that as soon as the stress started his pain level increased greatly. He took a lot of his 2mg. morphine throughout the day and by evening didn't feel well enough to drive home. Thank goodness for other members who watch over him. Someone drove him. Sun. I took him to get the truck. We had a fight and when I asked why taking care of himself and trying harder to stay alive to be with me wasn't top priority, he said that his priority is to help others. Fought more. Told him that i quit, i'll put all info. he needs to know in order to survive longer in his lap, if he wants to die than it's time i accept that and quit fighting, if he doesn't care why should i keep trying. He's not even trying to do what he needs to. He uses his lack of testosterone as an excuse for not fighting harder. I feel like i am dealing with a child at times. i fight with him to take his supplements, if i don't make his meals he either skips them or doesn't eat right. I feel my emotions shutting down to nothing or just anger. I look at him and think what right does he have to do this to us. I know he is tired of being in pain and taking pills, but he needs to reach deep inside himself, pull up his socks, and try. I can't stay and watch him slowly die knowing that i'm not enough to make him get a grip on himself and try. It sure doesn't say much for me or our kids and grandchildren. I can't believe that he's doing this. I've ordered Dr. Myers book although I'm starting to wonder why i bothered. Rob was a military man, very proud and used to being in charge and i know how hard it must be to feel like you have no control. After this last round of radiation he told me how much he is embarrassed and feels humiliated when the women who do the radiation have to reach so low to mark him and tape him before the treatment. He feels that he has no privacy of his own body anymore and this really bothers him.  He doesn't do any inner visualization techniques, exercise, relaxation techniques, nothing.  I've begged, cried, fought, used guilt, just about everything i know how. I feel more like his nurse than anything else. don't remember the last time we cuddled or reached out to each other. it's just depressing. right now i am so angry, that i'm just holding in so i don't blow up and say things i probably shouldn't say. How do you sit and watch your husband like this just complacently waiting. I never thought he would be like this. i by no means am minimizing what he or other men are going through with this disease so if i sound this way i don't mean to. Just don't know what to do now. i am so scared and i sure miss my old husband. i walk through this house when he is sleeping and realize how alone i am. Weid but i still need hope despite all i've just said. I'm tired and am so!!! close to giving up. is there any other woman in my shoes. not looking for sympathy just any ideas that might work.  anyway, i hope everyone is doing good and your partners are doing well. thanks lifeline

Hey Lifeline,

Low testosterone can cause deep depression. I barely survived 3 months of it last spring and was to the point where I had to lock up all my guns to keep from killing myself. I don't think doctors realize the depths of this problem. I'm not making excuses for Rob's behavior, just stating my own experience.

Hang in there...

Jim

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Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.

The whole thing is tough. From any point of view. I think you give a good description of your husband. I'm sure he misses his old life, too. At this point, I'd say hands off...by that I don't mean to write him off, I'm just saying this: don't take it personal. Since you've already argued and tried to get your point across after so much of that maybe he just needs time to think. He may reach out to you or he may not. I guess all you can do at this point is suggest the valium (as Swim pointed out) and the reasons why (as Jim pointed out). If you think you can't do this verbally do it in writing. Print out this post. Your husband sounds like a good man who is in a terrible situation and is looking for a way to work things out, even though it may not seem that way to you right now. I sincerely hope this can be resolved for both your sakes.

I wish you the best,
Susan

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Husband Diagnosed 11/17/05 Age: 63 PSA: 7.96 No Symptoms
2/09/06: LRP - Post Pathology - Gleason 4+3 Stage T2b NO MX
3 mo. PSA: 11.8 Stage T3a
6 mo. PSA: 18.8 Stage IV Systemic w/ distant lymph node involvement
Start HT - Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1
09/05/07: PSA 0.1
11/27/07: PSA 0.1

Dear lifelilne,

I was just reading your latest post and my wife caught me weeping. I was embarrassed and she suggested that this site was bad for me. I reminded her how much I benefitted and how much I owe this place. Please read biker and swim and myman again and again. Go to bluebird's help pages. You are in a bad place at this time, but I expect that you will prevail. Keep the faith and never give up. My wife read your posts and wishes you the best in a most difficult time.

Regards,

Bill

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August of 2006, PSA up to 4.2 from 2.7 one year ago. 

Hi Lifeline,
I have done alot of reading about the different treatments and the effects they can have on the person. Rob is going through enough with cancer, and the fact that they have also deprived him of the androgens. It could affect anyone in the way it has affected Rob. But I have read where the treatment may affect mood swings at various levels, and that it may be a good thing to discuss with the oncologists. They can prescribe medications that keep his mind at ease and improve quality of life. These medications can become necessary. Have they looked into using drugs to control the mood swings? It certainly sounds like an inquiry about this may ease some of his pains, and certainly keep the family together. My prayers that the answers come soon. And God Bless you.

Tony

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Age 45 (44 when Dx)