Tami Posted June 26, 2006 Share Posted June 26, 2006 I was worried that this might get lost in that long post. Please let us know how things go when you contact Cedars-Sinai about the trial that meredith spoke of. I clicked on the link that she included and it does look very promising. I wish you could have found them sooner but at least you have them now!!!! I am praying that this will give both you and Keith some options, some available treatment options and some hope. Keith is willing to fight... they must give him something to fight with. Please let us know how things go. Many prayers for you both. Tami Link to comment Share on other sites More sharing options...
ztweb Posted June 26, 2006 Share Posted June 26, 2006 Ditto! I have been going through that big long post, and wondered about starting a new one. Glad you did! jen Link to comment Share on other sites More sharing options...
Maryanne Posted June 27, 2006 Share Posted June 27, 2006 ditto, ditto... also let us know how the Invetro Fertilization went. I do hope you stayed in bed for those 3 days! How are you feeling? thinking of you and Keith, Maryanne Link to comment Share on other sites More sharing options...
RandyW Posted June 27, 2006 Share Posted June 27, 2006 Angel Network could probably help with Transportation and We all want to hear about the Baby ya know Wishes and Prayers and Big Warm Fuzzy blankets. Link to comment Share on other sites More sharing options...
dchurchi Posted June 27, 2006 Share Posted June 27, 2006 Carleen as always you and Keith are never far from my prayers. He is such a fighter lets hope new treatment options will be avaliable. Any baby news? Link to comment Share on other sites More sharing options...
Carleen Posted June 27, 2006 Share Posted June 27, 2006 Thank you everyone for all your thoughts and prayers. This past weekend I did pretty good at obeying the complete bedrest thing, but was really looking forward to getting up and about and going back to work yesterday. I still have lots of lifting and bending restrictions, but at least I could walk around. But, all that changed Sunday night when I had to pick Keith up from off the floor. Roughly around 11 PM Keith woke up with just agonizing pain in this swollen arm and shoulder. He has been so weak the whole weekend, and was complaining about occassional pain, but this was constant. He was also sort of confused. I didn't know if it was from waking up, or taking more pain medications, but he just wasn't understanding what I was saying and couldn't really communicate what he meant to me which really was frustrating to him, but he stayed so sweet about it. I woke up to find him lying naked on the floor moaning in pain. When I got up to help, he told me he was looking for his pillow. I got him his pillow which he uses to elevate his swollen arm which was on the floor thinking he must have crawled down to get it and he said no, he wanted the bathroom, where was the bathroom. I pointed out that we were right next to the bathroom door and I helped him to get back to sitting on the bed. He kept going no, where's the bathroom. After saying that 2 times he finally said bath robe. He wanted his robe so he could go downstairs because he couldn't get comfortable in bed. I got him dressed and helped him in the long process of going down stairs and getting him set in his recliner. He took some more oxycodone and started to doze off, but after only 30 minutes he woke up and forgot we had just come down, he said "it's time for us to go to bed" and had me help him back upstairs, which takes about a half hour to do. After 2 hours, he decided he wanted to go back downstairs and I help carry him and his pills and water glass and blanket back downstairs. He continued to writh in agony all night long, refusing to go into the hospital or even to take more pain medication. He did finally fall asleep around 6-6:30AM on the couch and woke up around 8. He was much more alert this time and we talked about the pain and he agreed to go into the ER. So, Keith is right now admitted at Froedtert Hospital. They have given him a pain pump, which has made him comfortable, but he is pretty much sleeping 24 hours straight. He still seems to have anxiety or something at night because all night long every hour he kept wanting to get out of bed and sit in a chair because he was uncomfortable, just to spend 5 minutes in the chair and want to get back into bed. The process and effort it takes to get him in and out of bed is great, so I just don't understand why he keeps doing it. He can no longer lift his right arm. He can stand, but struggles to do so, and can only take a couple of steps before having to sit down. He still seems a bit confused but it could be from the heavy medication. It just all seems so unreal. Just last week Tuesday he took me to the fertility clinic, he drove and walked all the way through the parking lot, and all the way through the hospital. He took care of me when we got home. Now, just one week later and he is almost completely vegatative. Keith's doctor says that from the rapid progress, plus some signs he sees (some prtecial hemmoraging), and just his general state, if he had to be honest he would guess at only a couple more weeks. (And this is coming from a guy who never would tell us a prognosis or stop fighting for Keith). He told me this privately, not in front of Keith. He told me this because he said Keith is so weak now that he doesn't feel I can care for him alone anymore. He said he thinks Keith would benefit from a PCI pump for pain at home, and that would come from hospice. He feels Keith will not be able to be mobile even as limited as he is for much more than a few days as his muscles are so wasted and his body isn't taking in nutrients anymore (liver functions look bad). He will not release Keith from the hospital unless he is released with arranged hospice care. So, it looks like there is no opportunity to go to Cedar Sinai. It is too late. Keith is going on hospice. The end is coming and my love is dying. My life is ending and I will never be ok again. We have always lived our lives telling each other every day how much each other means to us, and how grateful and appreciative we are that God gave us the gift of each other. So he knows exactly everything I think and feel for him. And I know exactly how greatly he loves me. Now I have to figure out how to say goodbye to that magnificent man, and to live without ever being loved so strongly and deeply ever again. Link to comment Share on other sites More sharing options...
MsC1210 Posted June 27, 2006 Share Posted June 27, 2006 Carleen, I just do not know what to say. I am so, so, so very sorry about all of this. You and Keith have been through so much and through all of it your love for one another as well as your courage and strength has never wavered. I hate so much that this is happening. My heart just breaks for you both. I pray for continued strength for you both and I pray for your peace of mind and for Keith to be comfortable and for the pain to ease. I wish so very much that I could do more.. Love, Chris Link to comment Share on other sites More sharing options...
lindseysmom Posted June 27, 2006 Share Posted June 27, 2006 Oh Carleen, I am so sorry. Dee Link to comment Share on other sites More sharing options...
SSF Posted June 27, 2006 Share Posted June 27, 2006 Dear Carleen, I am crying as I read your post. Although I have never met you, through your posts I can see what a truly compassionate, loving person you are, and my heart breaks for what you are going through. I have never seen such devoted love in a couple. I know I can't offer you much, but please know you both are in my prayers - now and in the future. Sandra Link to comment Share on other sites More sharing options...
Ellen B. Posted June 27, 2006 Share Posted June 27, 2006 Carleen, I'm so very, very sorry to hear this. You and Keith are in my thoughts and prayers. Ellen. Link to comment Share on other sites More sharing options...
cindi o'h Posted June 27, 2006 Share Posted June 27, 2006 Carleen, I am so very sorry to hear about Keith's final struggle. Please accept my prayers for holy angels to surround Keith and you during this most difficult time. Cindi o'h Link to comment Share on other sites More sharing options...
KarHart Posted June 27, 2006 Share Posted June 27, 2006 Dear Carleen, I am so sorry. What is happening now with Keith is what happened to Ken the last 2 weeks. There was a lot of mental confusion caused I think between the pain meds and the liver failing to clean out toxins that go to the brain. He also became very weak and did not understand that he could not just get up and walk by himself. I am so glad that you have talked to each other and said everything that needed saying. Unfortunately, you may not have many lucid times left with him. I wish Ken and I had talked more, but I think both of us were too afraid, then it was just too late. I know what a difficult time you are now facing. Please call on everyone around to help, you will need it. I wish there was something I could say to make it easier, I pray for you and Keith constantly. I am still praying for a miracle for you both, the child that you have fought so hard for. Please let me know if there is anything I can do to help. Karen H Link to comment Share on other sites More sharing options...
Treebywater Posted June 27, 2006 Share Posted June 27, 2006 Carleen--Just standing with you... From so many miles away, holding you both up in love. I'm so very, very sorry. Link to comment Share on other sites More sharing options...
adela Posted June 27, 2006 Share Posted June 27, 2006 Dear Carleen, Ask for help your church or the hospice has volunteers to be with you. You are such a wonderful caring wife and caregiver to your husband. My husband could not say good bye to me he did it thru a song "Beyond The Sea" maybe this would be comforting to you. Of course everytime I hear that song I cry, but my husband just knew I would see him Beyond the Sea......and we will love again. You take care of yourself Adela Link to comment Share on other sites More sharing options...
MilliBr1 Posted June 27, 2006 Share Posted June 27, 2006 Carleen I am so very sorry. My prayers for both of you continue. Link to comment Share on other sites More sharing options...
Sheri Posted June 27, 2006 Share Posted June 27, 2006 I'm so sorry to hear this too Carleen. Wishing you and Keith some peace and strength in the coming days. Link to comment Share on other sites More sharing options...
EastCoastLadi Posted June 27, 2006 Share Posted June 27, 2006 Carleen, I'm so heartbroken about Keith and you, I don't know what to say just please, please if you need anyone to talk with, I'm here... Please know that hospice will do everything possible to make Keith as comfortable and pain-free as possible. I know that right now this may be difficult to do, but please try to take care of yourself the best you can...it's ok to ask for all the help and care you and Keith need. All my prayers... Grace Link to comment Share on other sites More sharing options...
kamataca Posted June 27, 2006 Share Posted June 27, 2006 I wish I had some magic words for you. Your love is so magical, and I pray you can find some good moments during this time. I have lots of prayers for you and Keith, for strength and some peace. Take good care of yourself while you are caring for him. Lots of love coming your way. Kelly Link to comment Share on other sites More sharing options...
meredith Posted June 27, 2006 Share Posted June 27, 2006 Carleen, I've only "known" you (and Keith) for a few weeks, but this just breaks my heart to read. I don't know why this is happening to you both (or to any of us), but it makes me angry. I just want to fight it, this cancer, from all of our bodies. Why is this happening? Is it all random? Has God desgined a plan for us through all the suffering? I hope the latter is the case..... I wish you and Keith all the comfort and peace in the world. He has fought so hard and so long, with bravery and kindness. You are both in my thoughts. Link to comment Share on other sites More sharing options...
gail Posted June 27, 2006 Share Posted June 27, 2006 I look at your smiling faces, and cannot fathom the pain you are both going through. You know that you have all of us standing there with you and holding you up. Prayers and more prayers gail Link to comment Share on other sites More sharing options...
Darci Posted June 27, 2006 Share Posted June 27, 2006 Carleen, I am so sorry for you and Keith. You have such a special love for each other, and I hope that your love will help you through this time. Take care of yourself, and know that we are all praying for you and Keith. Link to comment Share on other sites More sharing options...
ztweb Posted June 27, 2006 Share Posted June 27, 2006 Oh Carleen, My heart just breaks for you. I am so, so sorry, and I wish so much there was more I could do. Do you have family near you? You heart is easily one of the biggest I have every "known" and I pray so much that God gives you peace during this time. This is one of those times when one wants to yell and scream at God, for letting this happen. I know how that feels as I have done it a number of times this year. God can handle it, and although he didn't plan this, or doesn't want ill for you or for Keith, again I have to say that He understands far more than we ever could. More than anything I pray that you have peace in your heart, and that you know how much you are cared for by those of us on this board. May God wrap his arms around you, bless you with peace, and as always we pray for miracles. God bless you. Jen Link to comment Share on other sites More sharing options...
flwrjunke Posted June 27, 2006 Share Posted June 27, 2006 Carleen, I'm so very sorry for what you are going through. I know how devastating this is. I hope they get Keiths pain under control and he's made comfortable. My prayers are with you both. Patty Link to comment Share on other sites More sharing options...
trish2418 Posted June 27, 2006 Share Posted June 27, 2006 Carleen I have no words to describe just how sorry I am for what you and Keith are going through. Praying for a miracle and a lot of strength. God bless. Trish Link to comment Share on other sites More sharing options...
Ann Posted June 27, 2006 Share Posted June 27, 2006 Carleen, I really don't have any words to help right now. I just want you to know that I am saying prayers for you and Keith. I pray God will be with both of you dring this stage of your journey. I pray that He will grant Keith peace and free him of this terrible pain and I pray that He will grant you the gift of strength. Link to comment Share on other sites More sharing options...
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