"And how many words have I got to say? And how many times will it be this way? With your arms around the future, and your back up against the past. You're already falling, it's calling you on to face the music - and the song that is coming through. You're already falling, the one that it's calling is you." Moody Blues, The Voice
Tonight, I just want my Sammy back. Rocky threw up all over the place, so I shampooed the carpet in various spots. Sam sat in his recliner and both cats burrowed in on top of him, scared out of their minds. It was absolutely adorable and I wanted a picture. I stopped shampooing, grabbed my iPhone and started to take a picture. Sam got pissed off, said no pictures, threw the cats off his lap, got up and stormed into the bedroom. I could not believe it. He then told me that I had blown it by not turning off a light which I knew shined into his face and then insisted on trying to take a picture when he had told me not to. At this point, I could not tell you if I did or did not. I am a complete mess. He went to bed about an hour ago and I have tried to relax and stop crying, and all I do is cry harder. I am so sad on so many different levels. I know he is not in his right mind and that is the most difficult part. I also know he realizes his behavior is crazy but he cannot stop himself in the midst of the anger and he is too proud to come back and apologize. Besides, by the time he sees me again after these episodes, he has long forgotten them and we have moved on. It is so incredibly painful.
Tomorrow I am going to call his doctor and beg him to not ever put Sam on carboplatin again and to also make sure when they do the PET scan next week, a brain scan is included. He told me earlier today he hurts all over. How can a person live like that? His quality of life right now just sucks. This is not our lifestyle, we are a glass half full family and we are not living like that at all. 
I wish I could snap my fingers and everything will be alright. This is pure unadulterated hell and I would not wish this on anyone.
These are the times I find myself freaking out wondering if Sam is ever going to get back to himself or if this is what we are going to live with for however long. I do not want this to be my last memories of him. He accuses me of only worrying about myself, so I suppose I am by saying this. It is quite selfish. On the other hand, I do not want him to have to live like this, either. It is awful. Absolutely awful.
We know so many of you are keeping us in your thoughts and prayers and we both greatly appreciate that. We ask you pray for Sam to be able to maintain a good quality of life in peace and in comfort.
q'ua
Love you Dara....
ReplyDeleteI wish I could tell you with some authority or certainty that your lives will once again be what they were earlier, but I can not say that. I am, however, quite sure that your lives will change. as days go along, and Sam's C changes, the cells will send out different signals as they change. So it is inevitable that your lives will change. Perhaps all you can do is respond to these alterations of life in the best way you can, and pray and hope for the best. And you can continually adjust your own responses.
ReplyDeleteThe second part if this is to remember your Sam, and how things were in the good times.
I know this isn't much help, but speaking as one who expects to go through some of this, and is now to a lesser extent, I am trying to prepare me as well.
We are so proud of your strength and commitment.
It is painful to read about how often you, the caregiver, is treated so badly. Neither cancer nor pain are excuses for a person to be downright cruel. I know cancer well. I know palliative care and hospice. I have been blessed to share a person's last days, months, years on different occasions, from young children to the elderly. How you're being treated is despicable, and I hope you have a close support network.
ReplyDeleteIn all honesty, when a kind and gentle person is diagnosed with cancer, he/she may have moments like your husband, but generally manages to keep his/her kindness and goodness. Likewise, when a mean, entitled person is diagnosed with cancer, he/she spends the majority of the life that's left making the closest person/people suffer. What a waste. How incredibly sad.
My guess is that your husband has deep-rooted demons but has opted out of righting those demons before he dies. Instead, he sits in misery, and blames you in ridiculous outbursts (throwing the cats off of his lap because you should have known to turn off a light or not taken a photo!). He is blessed to have you, and I can't imagine what he would do if he were alone. Cancer or not, most people wouldn't choose to be around such an obviously miserable person. In all of my experience, a person who is as tormented as your husband should be encouraged to make right the things that are so obviously torturing him. YOU are NOT guilty or to blame. You should feel treasured.
Cancer in its final stages is hard enough. Add the way you're being treated to the mix, and I don't know how you handle it. One of my most treasured letters is from a person who was in so much physical pain from cancer itself, treatments, etc. He was dying. He knew it, as did his wife and young children. In the note, he talked about how cancer is just as hard for the caregivers as it is for the person with cancer. Imagine...such humility, heart and insight from a person in horrendous pain and trying to come to terms with leaving his young children and wife. Such grace and dignity. Did he get angry? Of course. However, he didn't show it. He talked about it some, but didn't give the anger more quality time than he gave to his wife, children, wife and friends. He did all of this while in pain. He didn't stand on the sidelines; he participated.
I pray that somehow your husband makes his peace and allows you to find yours in all of this. Perhaps his children can give you a better idea of where all of this nastiness is rooted. From your previous posts, I understand he has children from a previous marriage. How he parented will give you insight into his behaviour. I hope you understand that even though I don't know you, my heart breaks for you. Your husband's pain is being managed and will be reassessed time and time again so that he has as little pain as possible. What about your pain?
It is painful to read about how often you, the caregiver, is treated so badly. Neither cancer nor pain are excuses for a person to be downright cruel. I know cancer well. I know palliative care and hospice. I have been blessed to share a person's last days, months, years on different occasions, from young children to the elderly. How you're being treated is despicable, and I hope you have a close support network.
ReplyDeleteIn all honesty, when a kind and gentle person is diagnosed with cancer, he/she may have moments like your husband, but generally manages to keep his/her kindness and goodness. Likewise, when a mean, entitled person is diagnosed with cancer, he/she spends the majority of the life that's left making the closest person/people suffer. What a waste. How incredibly sad.
My guess is that your husband has deep-rooted demons but has opted out of righting those demons before he dies. Instead, he sits in misery, and blames you in ridiculous outbursts (throwing the cats off of his lap because you should have known to turn off a light or not taken a photo!). He is blessed to have you, and I can't imagine what he would do if he were alone. Cancer or not, most people wouldn't choose to be around such an obviously miserable person. In all of my experience, a person who is as tormented as your husband should be encouraged to make right the things that are so obviously torturing him. YOU are NOT guilty or to blame. You should feel treasured.
Cancer in its final stages is hard enough. Add the way you're being treated to the mix, and I don't know how you handle it. One of my most treasured letters is from a person who was in so much physical pain from cancer itself, treatments, etc. He was dying. He knew it, as did his wife and young children. In the note, he talked about how cancer is just as hard for the caregivers as it is for the person with cancer. Imagine...such humility, heart and insight from a person in horrendous pain and trying to come to terms with leaving his young children and wife. Such grace and dignity. Did he get angry? Of course. However, he didn't show it. He talked about it some, but didn't give the anger more quality time than he gave to his wife, children, wife and friends. He did all of this while in pain. He didn't stand on the sidelines; he participated.
I pray that somehow your husband makes his peace and allows you to find yours in all of this. Perhaps his children can give you a better idea of where all of this nastiness is rooted. From your previous posts, I understand he has children from a previous marriage. How he parented will give you insight into his behaviour. I hope you understand that even though I don't know you, my heart breaks for you. Your husband's pain is being managed and will be reassessed time and time again so that he has as little pain as possible. What about your pain?
Dear MM,
DeleteThank you so much for not only taking the time to read my blog but to also provide your thoughts and insights into our situation. I cannot tell you how much I appreciate you writing.
Luckily (if it may be called that) I was involved in an extremely abusive marriage for a short time many years ago and I now believe it prepared me for this. Sam does have many demons which, sadly enough, he refuses to address, holding me responsible for many things which are simply out of my control. It is so difficult to write about yet at the same time very therapeutic for me, especially since I am human and therefore, have issues of my own which need to be addressed.
Knowing how I am, I will probably re-read your post many times throughout the rest of this journey, however long or short it may be. I have developed a tremendous support network for myself, including my family, friends, online support groups and many other places. They are a true blessing. I hope to include you in that list.
I've learned that in order to take care of Sam, I need to take care of myself. It's when I am in my deepest sorrow that I know I am not doing that. Exercise is a lifesaver.