nancy c Posted May 11, 2005 Share Posted May 11, 2005 I'm writing because I have to vent and have a question--Mike is still weak and today Dr ordered some medicine to increase his appetite. His sister came over(she saw him last time -last tuesday when he was admitted to the hospital) and his aunt(who hasn't seen him in 6 weeks) and they both left very upset and said he looks worse than he did in the hospital?? Is it because I see him daily--i think he looks alittle better than in the hospital and of course he is very weak --but he did get around alittle today without his walker. But his appetite is poor and he doesn't eat much--so I guess there may have been alittle weigh loss since last week. I think his aunt feels I shouldn't have restricted the visitors while he was in the hospital--but I didn't want 20 people tracking in and out of his room every fricking day. So that was a decision our kids and I made--a NO VISITORS sign was put on the door. He needed rest and I was hell bent on him getting it. Mike told me tonite he thinks he'll probably end up in a nursing home!! this upset me alot and I told him-it will not happen. That we are taking care of him until he gets better. But I have this unrealistic expectation of him getting back on his feet and hopefully enjoying the summer. Is this silly?? Has anyone ever been so ill and then bounced back? I am trying to blame his condition on the chemo--and I realize he has cancer--but could he go down hill that fast?? I need some hope-something positive--the wedding is Saturday and I'm afraid that is what he is waiting for. God I hope I'm wrong. Pray for us please, Nancy C. Quote Link to comment Share on other sites More sharing options...
Patkid Posted May 11, 2005 Share Posted May 11, 2005 Nancy, We are so new to this...we have no idea about your questions, but please know how much we care and that we are sending strength and love for your family. My heart aches to hear you so upset........hang on. Do the best you can. Mostly: TRUST YOU OWN INSTINCTS. Visitors don't have your "gut" instincts. They probably are a bit scared and just did not know what to say. Love Pat and Bri Quote Link to comment Share on other sites More sharing options...
nancy c Posted May 12, 2005 Author Share Posted May 12, 2005 Pat-thanks so much. i do appreciate your thoughts and prayers. god bless,nancy c Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 12, 2005 Share Posted May 12, 2005 Dear Nancy, First of all, your bio says this: c/o of bone pain I'm not sure what that means. If he has bone pain, has he had a PET scan or a bone scan? Those two scans can determine if the cancer has metastasized to the bones. His bone pain could also be caused only by the cancer.My husband also got bad after his third treatment with chemo in Aug/Sept 2003. He did not have some of the things you describe that Mike has, i.e., swelling, vomiting, etc., but he had lots of other side effects and it literally knocked him out of commission for 2 months. He slept almost 24/7. Now, he was also getting radiation to the tumor in his lung which was 7 cm. at the same time as the chemo, so that gives a double whammy, especially with fatigue. He was so weak and tired that I honestly thought the treatments were going to kill him instead of the chemo. He was also very advanced at diagnosis (8 brain mets and the lung tumor, plus we're sure he had bone mets, but a PET scan wasn't done until he had a problem with his shoulder the following spring). Here's the good part: HE DID GET BETTER! He got a LOT better, but it took time. He never got back to his original strength level, but he got well enough to return to work full time, take care of everything around our house that he did before treatment, and even rides a big Kawasaki Voyager and took a trip to the Smokies on it last fall. He's having some problems now, but he's 19 mos. post-diagnosis, and all the time previous to now, he has done really, really well. Now, I am not saying this is the case with Mike. He's having some different reactions to the chemo. Do you feel comfortable and confident that his oncologist is on top of all these side effects? If not, go to another oncologist. The side effects you describe (if that's what they are) sound more severe than most have. Justakid (Beth) had some really profound side effects from different treatments, so it can happen that certain chemos can really be TOO MUCH for certain people. Even if you are comfortable with his oncologist, and since his side effects are so bad, I would still recommend getting a second opinion. I hope this helps give you some encouragement, and I appreciate you keeing up posted. Don't forget to take care of yourself, too. If one of the kids can cover for you for a while, go do some shopping or have lunch with a friend and try to do something that's not cancer related. It will help to refresh YOU and help you to stay focused and more calm. Love and hugs, Peggy Quote Link to comment Share on other sites More sharing options...
Ry Posted May 12, 2005 Share Posted May 12, 2005 Has anyone been so ill and bounced back? Absolutely! It has happened over and over on this board. I went to a conference last week and attended a workshop on nutrition and dehydration. One of the things I learned was that once you become dehydrated you lose your appetite and thirst. So try pushing lots of fluids, gatorade, water, whatever he'll drink and see if helps a little with the appetite. Good luck! Quote Link to comment Share on other sites More sharing options...
Don M Posted May 12, 2005 Share Posted May 12, 2005 Hi Nancy: I am praying that Mike has a big bounce back and that you get a break. Don M Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 12, 2005 Share Posted May 12, 2005 Yes, many have bounced back -- again and again. My wife has beaten the disease back with two chemo protocols, much radiation now and then, systemic infection and bilateral pneumonia. Hang in there and keep hope. I suggest you focus on the wedding and all of you enjoying that occasion right now. It will serve all of you well. Blessings. Don Quote Link to comment Share on other sites More sharing options...
Treebywater Posted May 12, 2005 Share Posted May 12, 2005 (((((hugs))))) to you. Your husband is so lucky to have you in his corner defending his needs even with resistance from the family. Being the go-between isn't easy, but you're doing such a good job. Don't give up hope. Better days can be ahead!! Quote Link to comment Share on other sites More sharing options...
Maryanne Posted May 12, 2005 Share Posted May 12, 2005 Hi Nancy, Sorry to hear Mikes delimma, but it will take time to get his strength back. And as far as the nursing home, he is just lashing out because he is so frustrated, scared and doesn't want to be a burden. Just give him all the encouragement you can. Time heals all wounds, and when the chemo is over he will get his strength back. Try to focus on the wedding, At least you have some kind of a deversion to take your mind off the Cancer and chemo part right now. There is probably so many things you have to do to get ready for the big day on Saturday. Mike will be there, that is what is important. And you will see that he will walk or use a walker to get down the aisle. But he will not use a wheelchair. I know that is something he would not want to do. Get you nails and hair done, take a leasurly bath. Just take some time for Nancy. Your time with Mike can resume again after the wedding of your daughter, Nicole. (I love saying that name, I have a Nicole also) All I am saying is hang in there, don't worry about Mike he will be okay. You can do this. Best of luck on Saturday....It is going to be a great wedding!! Maryanne Quote Link to comment Share on other sites More sharing options...
Calintay Posted May 12, 2005 Share Posted May 12, 2005 I don't think that he looks better to you then in the hospital because you see him everyday. I think it is the other way around. THey don't see him very often and he is just not what they remember/expect. I think you definately know wether or not he is doing better. Many prayers for your husband and you (of course family too) that he responds well to the treatment and it kicks this beast in the a--! Heidi Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted May 12, 2005 Share Posted May 12, 2005 Nancy I so glad you posted this. My mom just got home from the hospital today, she too was very sick. She is pretty weak, sleeps a lot, and has very little appetite. I know how worried you must be I am feeling the same way. After reading all the responses I am feeling a bit better about things. Hope you feel the same too! Keeping you all in my prayers. Millie Quote Link to comment Share on other sites More sharing options...
pammie Posted May 12, 2005 Share Posted May 12, 2005 Mike can get better. There is always someone who has seemed very low and then they bounce back. Praying for him to get better quickly and continuing recupperation. pammie Quote Link to comment Share on other sites More sharing options...
nancy c Posted May 12, 2005 Author Share Posted May 12, 2005 Thanks to all of you-Peggy-thank you -he has had bone pain with all his chemos-his last Pet scan was in Nov and it didn't show involvement of the bones. But his left neck tumor has destroyed some of his collar bone. This last round of chemo he was getting hit him pretty hard since Feb,--receiving Tarceva and iv avastin. The Dr has said these last 7-10 days that the cancer progression can also have this effect on him--but his cat scan recently didn't show any spreading of his cancer? He was/is dehydrated and doesn't have an appetite. So I just pray that he can bounce back. He does pretty much sleep 24/7. I will have to be more positive. thanks all of you,you're wonderful. God bless,Nancy C Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted May 12, 2005 Share Posted May 12, 2005 Hi Nancy, I did not have chemo and radiation, but a friend of mine did. He lost a lot of weight and used to sleep a lot too. He did feel better when he was done with all his chemo and radiation. They used to give him compazine to prevent nausea and that seemed to work for him. He used to complain about his back hurting a lot, but he could walk pretty good. Hope your husband perks up and starts eating. I had lung surgery. I have the opposite problem. I'm eating like a pig. I think its the steroids from the advair I have to take for asthma. I'm always hungry. Prayers and hugs for both of you! Sharon Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted May 12, 2005 Share Posted May 12, 2005 Hi Nancy ... I don't have much wisdom to share beyond all the great thoughts that you have had so far. This is a nasty disease, yes. But, there is always hope. Prayers going out for you and Mike. Cindi o'h Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted May 12, 2005 Share Posted May 12, 2005 Nancy, hang in there. Three times now my mom (Bellringer) has been so ill we thought we would lose her. Each time she has come back, albeit slowly. Getting Mike to drink and eat will help. Be encouraging to him as much as possible. As for how less frequent visitors react...they don't see the full minute-by-minute struggle. Listen more to your own instincts. Find out how to get some help at home, even if it's just a shower chair and other medical goods. Perhaps a social worker at the hospital can help with that. Showing Mike you have a plan to help him get out and recover at home may lift his mood a bit. It will also give you some confidence. Ask about visiting nurse organizations - can you get help there? My mom is getting help from a hospice organization which has a program to help seriously ill people who are still seeking agressive treatment. Maybe there is something similar you can use. Will keep you in my prayers. Hope you all can enjoy the wedding.[/u][/i] Quote Link to comment Share on other sites More sharing options...
chloesmom Posted May 12, 2005 Share Posted May 12, 2005 Nancy, I sure don't have any professional advice, and don't know much about your situation, but I do know one thing--hospitals are no place to get rest! From the lights and noise all night long, to the fact that the beds aren't comfortable and they wake you up in the night to check vital signs, etc., I was so happy to get out of the hospital so that I could REST! Give him a chance....he will be a lot more comfortable at home and hopefully get his strength back quickly. Cindy Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted May 12, 2005 Share Posted May 12, 2005 Nancy,many of us here have bounced back many times.It is very hard to but can be done.Like Ry said water and more water and whatever food can be eaten.Need to get strength back. Quote Link to comment Share on other sites More sharing options...
nancy c Posted May 12, 2005 Author Share Posted May 12, 2005 Thanks to all of you; this morning was better. He got up by himself and used his walker alittle--but felt confident without it. He is more alert. Appetite is improving slightly--but he is really drinking alot. Visiting nurses came in to check him but I had already helped bathe him. Physical therapy was here also. And they feel he is alittle stronger. He told Nicole today that he IS going to the rehersal dinner tomorrow nite.(we had already planned on someone sitting with him-didn't think he could go) Wedding is Saturday!! Maybe it will be a very happy day after all for me with Mike feeling better. god bless all of you,thank you,nancy c Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted May 12, 2005 Share Posted May 12, 2005 I tell you Nancy, there were nights (many of them) when I went to sleep with The Our Father prayer on my lips. I didn't think that I would wake up the next morning and it was the only thing that gave me peace enough so that I could sleep and when I put my life in His hands, through that beautiful prayer, I was able to let go. Many nights. I was pretty shot. Maybe a little like Mike; maybe not as bad as Mike. But, in any event, here I am to tell you that you never know if he will perk back. But, you must cling to that hope (and that prayer when said even in a whisper, is the most soothing prayer that there is in my opinion) Today looks better than yesterday. Good news. love, Cindi o'h Quote Link to comment Share on other sites More sharing options...
nancy c Posted May 12, 2005 Author Share Posted May 12, 2005 Cindi,thanks-that does make me feel better. It is amazing someone can be so ill for over a week and then slowly make the turn around. I pray that is what he is doing. I'm glad to hear from you-since you experienced the extreme illness and the gradual uphill healing. God bless you and thank you, Nancy C Quote Link to comment Share on other sites More sharing options...
Guest spiritual Posted May 13, 2005 Share Posted May 13, 2005 Chemo will kick the heck out of you. Make sure he is taking lots and lots of fluid. put him on ensure for now. (mix it into smoothies, etc) If he wants to just sleep, please let him. It's okay!! Keep his feet raised (prop pillows) to keep them from swelling. We did all these things when my partner was in the the same place as you are. After a few weeks she came around and is now enjoying spending time tending to her garden and preparing our meals. We just need to live for today because you or I can go anytime. stay positive about living just for today and let God handle the rest. KEEP ALL THE NEGATIVE ENERGY AWAY FROM YOUR HOME IF YOU MUST!!!! DO WHAT YOU FEEL IS THE RIGHT THING BECAUSE MOST LIKELY IT WILL BE GOD'S WILL take care Quote Link to comment Share on other sites More sharing options...
nancy c Posted May 13, 2005 Author Share Posted May 13, 2005 Oh thanks so much for the response. Yes, we are trying to do all those things. He still tires easily. He is sleeping now--He wants to go the the rehersal and the dinner tonite. We will see how he does, hopefully he can make both--but if he can't that's ok. Tomorrow is the big day and that is the one we are concerned about. Thanks,God bless,Nancy C Quote Link to comment Share on other sites More sharing options...
shineladysue Posted May 13, 2005 Share Posted May 13, 2005 Nancy, Just wanted to let you know that you , Mike and your family are in my prayers. I hope everything works out perfectly tonight and tomorrow for all of you. God Bless you, Sue Quote Link to comment Share on other sites More sharing options...
nancy c Posted May 13, 2005 Author Share Posted May 13, 2005 Thanks to all of you-it is an emotional time for me right now. Having this site to vent is a heaven for me. God Bless,Nancy C Quote Link to comment Share on other sites More sharing options...
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