Patkid Posted November 16, 2005 Share Posted November 16, 2005 I am looking for any insight or observation you can offer. Brian is really going down hill. I am struggling to understand what is really going on. He can be 'up' (on the couch not laying down) for about 1-2 hours out of 24. He is in bed from about 9 at night till noon or so. Then he lays on the couch. He tries so hard. I watch him decide to sit up and it takes all his energy to so. Then he is too exhausted to stay upright and lays back down. Our last time out of the house was Sunday for Church. He made it till right after Communion then became ashen and sweaty and nearly passed out. He had to sit for about 15 minutes and then he was able to make it to the front door. Friends sat with him while I got the car and he just made it. He spent the rest of Sunday in bed. He is so concerned that he 'made a scene' in church. He is so mortified. I keep reassuring him that folks understand, but he HATES to call attention to himself. I have no idea if this exhaustion is a result of treatment or disease progression. Doc said last Thursday that his out of control liver enzymes indicate more and rapid disease progression but Brian is NOT having fevers or night sweats (his usual indicator of tumor growth). His appetite is really coming back well (though his weight is still down). The confusion that he demonstrated during our FL trip is 95% better (though he still has moments of confusion/forgetfullness). In the last month: He had one treatment with Alimta One Infusion of Sandostaton One long lasting version of Sandostatin (IM) then doc changed to Navelbine and low dose of Carboplatin, saying we have to find something to stop the tumors from growing. Now I have no idea if Brian is in decline due to disease progression or if all the poison is catching up with him. After all he has NOT had a chemo break since diagnosis (February). He has always been on some kind of chemo. He remains pleasant, determined, optimistic and very sweet. Any insight? Any suggestions? I have taken FML so maybe I just have too much time on my hands and I am obsessing.........and worrying.....and trying to take over the job we know is GOD'S ............but I would welcome any advice or hug or help or prayer or good vibe. Thanks for being here. Love you guys P Quote Link to comment Share on other sites More sharing options...
carolhg Posted November 17, 2005 Share Posted November 17, 2005 I am so sorry to hear that Brian is not doing well. I want to know that I continue to pray for the both of you and continue to trust along with you. Carol Quote Link to comment Share on other sites More sharing options...
midge Posted November 17, 2005 Share Posted November 17, 2005 Dear Brians wife, I am fairly new to the board but from a nurses prospective (and a LC survivors view)(I am both) I would say it is a combination of both. His body has been through the mill with no time to rest. I can tell you that a break in chemo is wonderful and you feel so much better. The disease progression is certainly possible with his symptoms but who really knows? My heart is out to you, it is a tough road, try and stay strong and lean on who you can. My thoughts are with you! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted November 17, 2005 Share Posted November 17, 2005 Pat, Just love him. You aren't doing anything wrong nor feeling anything strange and I don't have a bit of advice for how to do it "better". Maybe get a portable baby monitor for him and find some home improvement project to work on? It'll keep your hands busy and you'll know if anything is going on with him, too... Take care, and remember to take breaks for your sanity, too. Have someone sit with him while you go get some groceries or whatever. No big weekend trip away, just some moments here and there. Hugs to you, Becky Quote Link to comment Share on other sites More sharing options...
nancy c Posted November 17, 2005 Share Posted November 17, 2005 Pat, I know it is so hard to sit and watch this disease and treatment take alot out of Brian. I too, felt the same way when Mike was going thru this. You feel afraid, helpless, and worried all the time. But, all you can do is love him and be with him. He needs you now. God bless, Nancy C Quote Link to comment Share on other sites More sharing options...
Kasey Posted November 17, 2005 Share Posted November 17, 2005 Oh (((Pat))), I have absolutely no expertise here, BUT I am going out on a limb to GUESS that what you and Brian are experienceing is a combination of treatment and progression. I have no idea what is the best way to proceed. Fred and I continue to pray for you both daily. Boy, I wish we lived close by. One of us would be there EVERY day to give you a break and just love Brian to pieces. Anyhow, Pat, guess just keep doing what you've been doing. All of us will pray and lift you up as best we can. We love you both. You are not alone. Kasey Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted November 17, 2005 Share Posted November 17, 2005 Pat, this is the worst part of this disease it seems to leave us with so many questions that even the doctors can't give us the answers too. Sounds like you are doing everything you can. I think it is a good sign that he wanted to go to church and tries to get up. When my mom was declining she only wanted to stay in bed. My prayers continue and I am sending you a cyber hug. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 17, 2005 Share Posted November 17, 2005 Pat, I was home having a pity party for myself and just read your post. You are an amazing woman and it is just so obvious how much you love Brian. I don't have any answers for you but do know that we think of you often and are praying for you both. Tammy Quote Link to comment Share on other sites More sharing options...
Ry Posted November 17, 2005 Share Posted November 17, 2005 I don't have any insights or suggestions to offer. It sounds like you are doing all you can. I hope he is able to gain some strength and has good days ahead. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted November 17, 2005 Share Posted November 17, 2005 Pat/Brian, Don't have any answers. Just want to say that both of you are amazing and incredible. What spirit, class, determination and dignity. Hope and pray better days are ahead. Rich Quote Link to comment Share on other sites More sharing options...
Fay A. Posted November 17, 2005 Share Posted November 17, 2005 Pat and Brian, Any time the Liver is stressed or damaged-whether the injury is due to disease or a Liver toxic substance-the first symptom is usually profound fatigue. This isn't like any fatigue a reasonably healthy person has ever experienced. The Liver is the body's "chemical processing plant". Its job is to take substances and either break them down into usable forms or break them down into NON TOXIC form so they can be rendered harmless and then removed from the body by the Kidneys. If the substance is too toxic and damages a portion of the Liver(like a lot of the drugs we take or the substances produced by the tumors), or if the injury to the Liver is severe (as when we have too much tumor and not enough functioning Liver tissue), then we will experience symptoms of Liver Failure. These can be profound fatigue, hiccups that will not stop, feces will turn very light or white, muscle pain and spasms, electric current sensation, mental confusion, hallucinations, nausea and vomitting, and worse depending upon the degree of Liver failure. The Liver can regenerate, if it is not overwhelmed by toxins or disease. Please tell Brian I can so relate to how he felt at Church on Sunday. But the way I see it Brian was in God's House...and I remember very clearly the lessons of Jesus Christ...he admonishes us to bring the children, the sick, and the infirm to HIM. And if that means we bring ourselves, well, I'm pretty sure He won't be displeased with us. Personally, I'm convinced that They are happy to see us there. Thinking of you both, Fay A. Quote Link to comment Share on other sites More sharing options...
sharyn Posted November 17, 2005 Share Posted November 17, 2005 Dear Pat, I don't have any answers, just opinions and they really don't mean much. No matter what is causing his decline, be it the disease or the treatment, it is still painful to watch. We got Daddy a pair of walkie talkies so he could communicate with us if we ever had to leave him for a little while (to go oustide and do yardwork etc.). I am praying for you both... I wish I had the answers, there is only one man who does. Love, Sharon Quote Link to comment Share on other sites More sharing options...
kamataca Posted November 17, 2005 Share Posted November 17, 2005 Pat, You have lifted me up so many times when I was down. I wish I could do the same for you. I am always in awe of the great love you and Brian share. In this world where many are quick to find the easy way out of situations, you both stay and fight and work. I don't know what is going on with Brian, either. I know how hard it must be for you to watch and wonder. I agree with Becky: just love him. It may seem simple, but that is really all he needs from you right now. Hopefully you know how much we all love you, too. Kelly Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 17, 2005 Share Posted November 17, 2005 Pat, my thoughts and prayers are with you two. This journey is overwhelming for both patient and caregiver. Your feelings are quite normal. I think it is super that Brian wants to keep trying things -- that is a good thing. And as many have said, no break from treatment can just wear the body out. A break would do him good. Blessings. Don Quote Link to comment Share on other sites More sharing options...
shineladysue Posted November 17, 2005 Share Posted November 17, 2005 Pat, I wish I could say or do something that would help. It sounds like you are doing everything you can . There is a point when you need to know to turn it over to God. You have been such a wonderful wife to Brian. The two of you have your strong faith . Continue to pray and love one another . Whatever happens from here on out is in God's hands. Know that I am praying for you both. Love, Sue Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted November 17, 2005 Share Posted November 17, 2005 Just the fact that Brian has been on chemo since February, to me, is unbelievable. I only did chemo from April to June and it made me SO SICK. I fainted in our dining room and my husband thought I was dead on the floor. Turns out I was just very anemic. Your husband is SO STRONG. I have a hard time understanding how a body can take so much. But it can. Pat, God loves us all and he understands our good days and bad days. Please tell Brian that there is NOTHING to be ashamed of. Everyone here loves him. ((())) Brian. Keep fighting. I'm praying for you both to continue your usual strong and courageous battle. Joanie ((())) Love you. Quote Link to comment Share on other sites More sharing options...
gail Posted November 17, 2005 Share Posted November 17, 2005 No special words of wisdom---just know I am thinking of you gail Quote Link to comment Share on other sites More sharing options...
Treebywater Posted November 17, 2005 Share Posted November 17, 2005 Pat, YOU are loving Brian SO well. Your care for him is amazing. You are amazing. Know that first and foremost. I don't have any real insight to add, but I the one thing I read that sounded encouraging is that his appetite is improving. That says to me that his body is still fighting, still pushing. Love you, and I will not stop praying. Val Quote Link to comment Share on other sites More sharing options...
Shar Posted November 17, 2005 Share Posted November 17, 2005 Pat, Just wanted to let you know that I am thinking of you both. I admire your strength and Brian's determination. Amazing. Sharon x Quote Link to comment Share on other sites More sharing options...
NancyT Posted November 17, 2005 Share Posted November 17, 2005 Dear Pat, I wish I had something I could say to help in some way. Please know all your love and support is such a comfort to Brian, you are an amazing couple. Sending prayers NancyT Quote Link to comment Share on other sites More sharing options...
Maryanne Posted November 17, 2005 Share Posted November 17, 2005 Hi Pat, I am still burning that candle for Brian and sending him out prayers. I wish I could do something. Like Kasey said if we lived close we would be there for you. All I can do from this distance is pray and to let you know that I am here for you like so many others here. It is so frustrating to hear what Brian is going through. It s amazing that he can still be so sweet and loving. He is so special. Just keep doing what you are doing. You are a pillar of strength for him. G-d Bless, Maryanne Quote Link to comment Share on other sites More sharing options...
Nushka Posted November 17, 2005 Share Posted November 17, 2005 Pat, I will post the post that I was ready to post when I saw yours. (((((((Pat & Brian))))))) Nina Quote Link to comment Share on other sites More sharing options...
RandyW Posted November 17, 2005 Share Posted November 17, 2005 Dear Pat, Could this possibly be pericarditis? This is caused by a build up of fluid around the heart and can usually be fixed with surgery for a window. This may not be the answer, but it is a good question to ask. the only way is to ask your Onc. I am not a doctor but this is a thought that I had. DEb Had This too. I will say prayers for you guys, Take Care and good Luck Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted November 17, 2005 Share Posted November 17, 2005 Pat, Prayers for healing coming your way! "Cast all your anxiety on Him because He cares for you." 1 Peter 5:7 GOD BLESS, Jamie Quote Link to comment Share on other sites More sharing options...
jean44 Posted November 17, 2005 Share Posted November 17, 2005 Pat & Brian, No answers but, plenty of hugs, love, and prayers coming your way. I admire you both for your strength and determination. God Bless. Jean Quote Link to comment Share on other sites More sharing options...
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