Jan 10, 2014 - 11:35 pm
I am actually on here trying to get some ideas and help for myself and my husband. Some background: my husband was not tested until he was 55 years old in 2009. To make a long story short over several tests and different doctors his PSA tripled in a year, they did a biopsy and he was diagnosed with stage four prostate cancer with a Gleason of 4+3=7. He was only given two choices: surgery or radiation and he chose radiation because he wanted a better quality of life now instead of later. He finished his radiation treatments before Christmas in 2010. He was immediately started on Lupron injections every three months. He did them for about a year and a half but the side effects were too great so he was taken off of them in 2012. In October of 2013 he had a new PSA test and it had shot up in 7 months from 1.3 to 7.36. The doctor told us to come back immediately. From Oct. 8th to the 24th in a new PSA test it went even higher to 8.34. So they did another nuclear bone scan, and CT scan but thankfully they still did not find any metatisation. So they started him on Lupron again and he will have two injections over six months and then they will check his PSA and see where things stand. If it goes down again they will hold off and do injections only intermittently, but if it is still up they will continue the injections. We are supposed to be hearing back from a clinical trial board who wants to work with him even though he does not meet the criteria for the actual trial. But so far have not heard back since the initial contacts.
They say his cancer is very aggressive but there is not much else that can be done at this point.
My reason for writing is to try to get help for both of us on how to handle some of the side effects of the Lupron. I have been doing everything I can think of to make him as happy as possible but have never dealt with this sort of thing and don't want to make things worse with good intentions gone wrong. Although I have personally dealt with both cancer scares and actual cancer in the form of mole, it is nothing like what he is going through, but I still know the fear that the "C" word induces. At one point I was told that I had Lymphoma which turned to be false but still I do know how it felt for a while anyway.
But still I know it is much more important for him and I want to do the right things. I don't think I am supposed to hover over him or smother him but I have always spoiled him and served him because I wanted to, so I still do that. I have always been a positive and happy person and know the importance of staying positive even while facing reality. My husband on the other hand has always tended to be more on the pessimistic side. So rather than focusing on the cancer everyday in and out, I try to make him happy, smile, laugh, and just have as normal and wonderful a life as possible for whatever time he has - be it a few years or 10+ years. I realize his limitations though and don't push anything that can hurt him. He has his days when all he can do is sit in his chair and watch TV or sleep and then he has good days when he wants to work on the car or RV. (After his radiation was finished, and after losing two friends totally unexpectedly to cancer) we sold our house and bought an RV. He was already retired and I took a year off of teaching and then retired the next year. But the Lupron or the combination of the cancer, radiation and Lupron really messes with him.
Some of the things we face are: bone pain in his knees, feet, legs, hips and should areas (but he also has arthritis), problems with losing or damaging teeth, hot flashes which he controls with medicine, short term and some long term memory loss, total cessation of libido and intimacy, and severe depression, anger, and mood swings, and not really hallucinations, but imagining things or seeing things other than how they are which then causes severe anger outbursts. Today the doctor prescribed a light antidepressent for him so we will see how that will work.
It is the last one that we are having the hardest time dealing with. Although I try to be understanding as much as possible, being human, when he jumps, I admit that I fail sometimes to remember why, and jump back. Last year, we were work camping at a state park in another state. He usually was the campground host or did light maintenance work and I worked in the visitor center. We both helped the ranger do the fee counts and it was my turn on this day. It took a little while and unbeknownst to me when I got back he had cooked breakfast anticipating a quicker return. When I walked in, I was completely unprepared for his outburst of total anger and the accusation. I have never given him any cause to worry about my love or loyalty to him, and I did not handle it well and was very hurt. We finally worked everything out and he realised that he was having problems with his emotions and anger and depression. He was fine when he went off the Lupron but recently started it again and last night we had another blowup. I should have realized that it was the same way of acting on his part even though it was over something completely different. It was really silly but he got completely irrate because I asked him if he always had to be so negative. He has said that about himself many times and I am always trying to get him to have faith and believe that good things do happen. I was not even angry at the time and simply made a statement as usual. But again, I was unprepared for the total outburst and sadly, went into the defense mode. I was very hurt and felt like he does not see and appreciate all I do for him. I feel like we are starngers sometimes and that is so sad because we were always so proud of the fact that even after almost 23 years that we still acted like newlyweds.
All I ever wanted to do was to make him happy and get him to think in a more hopeful way. I don't want him to spend the time he has being miserable all the time. But he has to want to be happy. I can't change his physical problem of cancer. I pray all the time for him and a total healing miracle would be perfect. But if it is not to be, I want him to enjoy what time he does have. He will face a lot of rough times towards the end and so there will the time for that. But now, while he is able, I want him to enjoy whatever he is able to enjoy. I don't try to force anything on him and let him decide what he can and cannot do, or what he wants or does not want to do. I don't even care about the intimacy issue, because that is not what love is based on no matter how wonderful we always were together. I don't want to give him any reason to feel worse than he does. But what is so hard for me is the lack of his happiness and total focus only on the cancer and being depressed. Also the lack of closeness between us a lot of the time. I don't want to push him, but he always tells me I need to let him know what I want or need but then when I do, I am wrong for doing it because then he feels I am telling him what he is doing wrong. So at times I just feel like we are strangers in the same house. We love each other and I am in this till the end and willing to do whatever I can but I am human and sometimes it is so hard because I do love him so much so it hurts when he treats me that way.
SO... I guess I need help in being able to figure out the signs, ideas on what I doing wrong or what else I could do to help him. He needs help on knowing how to make himself be happy and not be so depressed. We are hoping the medicine will help him some but we hate the idea of yet another medicine and something that could make him addicted.
I apologize for the length of this but I need help. Thank you in advance to anyone who wants to tackle this.