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Thank you all for your kind words. Joe was such a huge presence in the house I just can't believe how empty it seems. Of course we have Christmas and the wedding of our daughter this weekend but I keep almost forgetting that he is gone. I mean, I think of things I want to tell him or ask him. Then I will go a little while and not think of him and feel funny because of that. Next week when everyone leaves, I am sure reality will hit in a big way. I had a doctor appointment with our regular doctor today (routine) and the nurses all came in and gave me hugs and then the doctor did also. We have been going to him for 19 years. When I run into someone I haven't seen, that is when it all washes over me again.
Sorry for rambling but it helps me get my feelings out and figure out where I am.
I wish everyone the best Christmas possible. For some of us it will be the last with our loved one and for some it will be ther first one without them. May God comfort us all wherever we are may we all be thankful that He sent Hi Son for us on the holy day. Merry Christmas. Mary Anne
Joe went home to be with the Lord on Wednesday. Those of you who read the blog already know this but some don't read them. He died peacefully at home on Wednesday morning and we had services yesterday and today. All our children were able to make it in even with the bad weather forecast and all 5 of my siblings came from all over to support us. Our daughter was with me when Joe died and it was a comfort to be there when it actually happened and not to be alone. Hospice was a fantastic experience and allowed me to keep Joe at home til the end. He was diagnosed July of '06 although he had symptoms almost a year before that. So he lasted 29 months after diagnosis so he put up a great fight and was never in pain from the cancer. We will miss him terribly and I keep wanting to jump up and check on him or expect to hear him call me. It will take awhile to get used to this but I have lots of friends who have been through this because we live in a retirement community and the prayers of our friends willl sustain me as Joe's journey is over but mine continues. I will continue to write on the blog for awhile www.joesinformation.blogspot.com Thanks for all your support and I will stay in touch with all my friends here. God Bless. Mary Anne
My husband Joe has had ascites for about 7 months. They put him on Lasix and it didn't do much on its own but then they added another diuretic and that helped. He had it drained this summer and it lasted a month and then he had it drained three more times. They don't like to do it too often becasue it takes out the good fluids as well as the bad (like albumin). It does come back but that is an individual thing. Joe liked to call it his egg. At first he was embarassed about it, afraid people would think he was fat but then he kidded about it. he has been battling this disease for 28 months and I'm sorry to say now he is in hospice and at the end of his journey but we had many blessings along the way. Hang in there and prayers are comikng your way. God Bless. Mary Anne
Well, here it is alomost a week later and we are still on the journey. Joe hasn't eaten for 9 days now. he only drinks about two glasses of fluid a day. The hospice nurse said he could go two weeks but his output is really dropping. The toxin levels must be increasing becasue the Ativan dose isn't holding him well so I just called hospice again to up the dose. I promised to keep him comfortable. he cannot even turn in bed by himself now so I have to have help. I have great neighbors and kids so so far I think I can keep him at home. That was his wish and mine too. My back is better now that he has a catheter and i don'thave so many changes. I keep praying for God's timing to separate the funeral from the wedding but we are only 16 days from the wedding now. Karen is back in Phoenix with Mark but will be back the 23rd for Christmas (and the wedding the 27th)or before if necessary. I blog every day but only get to this site about once a weekl Hard to keep up but thanks for bieng here when I need you. God Bless. Mary Anne
Prayers for you Kris,
Hope you get some answers that are helpful. god Bless. Mary Anne
My prayers are with you as you go through this difficult time. Joe is still hanging on although he hasn't eaten in 9 days. Hospice says he could go another week. I can hardly believe that. I just hope that he dies before the wedding of our daughter Karen on the 27th. He does nothing but sleep and when he is awake the toxins make him agitated sohe is on Ativan and Roxinal which help a lot. Stay on the site and get support from those who know what youa re going through. God Bless. Mary Anne
So sorry to hear of John's death. My Joe is only days away and I can't imagine what it will be like. We spend so much of our day taking care of them in these last months. The outside world goes away. Joe has been in hospice a month and we thought he would be gone now but there must be a reason he is still here. My heart goes out to you and I am sure I will be on this site when I am home alone and looking for people who have walked in these shoes. May God give you comfort in the lonely nights and friends to hold you during the days. One day at a time - I'm trying that too. God Bless. Mary Anne
All I can do is say ditto to what everyone else posted. I have been on this site for 28 months since Joe was diagnosed. He has been in hospice for a month now and we thought it would only be days. I wish you a peaceful journey. Know that you have touched many lives and helped a lot of patients and caregivers in their journey with your courage, insight and knowledge of this disease. I will pray for a easy transition fro this world to the next. Maybe all you cc people can have a party together. God Bless. Mary Anne
I can't believe Joe has been in hospice almost a month now. The nurse thought he would be gone by Thanksgiving but here we are. He now has a catheter which he wasn't crazy about but my back was giving me trouble and I have already had back surgery 8 years ago and a herniation last year so I asked him to do it for me. Our kids have all gone home now and although we have two in town they both work so will just be stopping by. I also got a hoyer lift so I can move him up in bed. I am very thankful for my nursing training or I don't know if I could manage this at home. He is sleeping most of the time and when he is awake he has a very difficult time getting his words to day what he means. He is on Ativan about 4 times a day and oral morphine (Roxanal) about twice a day. I have been expremely pleased with hospice and their prompt response to anything I need.
we are now 3 weeks from our daughter's wedding. The ceremony will be at the house with just family. We never thought Joe would make it this far but my hope is that his death and the wedding don't happen on top of each other. Ony God knows the timing and we trust in him to work it out in the best way. Our daughter who is getting married got laid off while she was in here (she was in the housing field) so she is back in Phoenix looking for a job. I have moved the computer in to the bedroom so I can catch up on cc and still be with Joe. Thanks for your continued thoughts and support. Mary Anne
It sounds like you and I are in about the same place. Joe has been in hospice for about 10 days now. No rattle yet but the confusion and the swelling are huge. He sleep most of the day but has some lucid periods. We have now limited visitors to just family and that helps a lot. THe nurse said he may just stop breathing and die or he could go into a coma. With Thanksgiving coming we canoot plan anything. We have a daughter getting married at Christmas and the bridal shower is the day afte Thanksgiving but we have to hold evrything with a loose had. Just one day at a time. It is not in our timing. I hope you have family around to help you. I can't do this by myself. I can't even move him in the bed alone anymore.
My prayers are with you as we say goodbye. Mary Anne
It has been almost a week since I posted on this site but I have been making daily entries on the blog. Our 4 kids are here with me all the time now. The two in town ones leave to go to work for awhile and then come back. The hospice nurse told us a few days ago that she didn't think he would live a week. He is confused sometimes because of all the jaundice and toxins in his body and he sleeps most of the time. He seems to have an awake period in the evening and we take advantage of that and all gather on the bed and sing worship songs and old John Denver songs that he used to play on the guitar. Last night he even watched a little football with Michael. He is still comfortable with a little ativan once or twice a day and some liquid morphine once a day. He is starting to itch a little from the jaundice and that would be the worst thing for him. He got a bad sunburn when he was young and the itching almost drove hime crazy. I will ask the hospice nurse for something for it today. Right now it is just minor and intermittent. Thank you all for your wonderful comments and words of compassion.
If you want to keep up with our daily journal it is on the blog. I have found that to be a wonderful way to chronicle our journey so if some of you haven't tired it, you might find it useful to keep track of how things were along the way. It also helps to have kids who ar computer savy. I have to say I haven't had time to read the site in the last two weeks.
With all the kids here they are constantly on the computer doing work related stuff or just trying to keep in touch with their friends. Yesterday they cleaned out my utility room and three cupboards in our kitchen. Do you know how much stuff you can accumulate in 20 years and you never throw anything out? I have a huge pile for good will and now I can find the things I use all the time. Our bedroom is on the main floor so we take turns going in and sitting with Joe. He really doesn't want a lot of talk at this time except for the evening time.
It sure seems like I'm ramblin but I have a few minutes alone so I wanted to touch base. Thanks for being here whenever I need you. Mary Anne
Well, we are certasinly impressed with ospice. The nurse came yesterday and covered all aspects of care and then got orders for things we "might" need so we re ready. we now have oxygen in the house "in case", ativan to help him sleep, a lift chair so he can get in and out by hiself which helps his dignity and today he got a massage ofhis legs to help with the fluid buildup. I think he lilkes the attention. The one thing the hospice nurse said that I thought was really important was that he is the boss. He can eat what he wants or not, not take his Lasix if that was OK with the doctor (which is was). She explained the consequences to be sure Joe understood. I went to exercise for the first time in three weeks and that felt good. I know I have to do things for myself. I try to do them in the morning while Joe is still sleeping. Anyone else waking in the middle of the night and not being able to sleep? I am taking a sleeping pill but lately I have just been getting up and journaling and getting on the computer for a few hours and then go back to bed. It is hard to stop your mind from going. So far there is not a lot of physical care for Joe but I try to spend as much time with him as I can while we are still together. I do find it more peaceful being in hospice for some reason. We had too much company yesterday and today was a break. Joe slept most of the afternoon after not getting up til noon but that is OK. Again, thanks for being here to listen and advise. It has been such a big help. I really like this hospice section. We really ae in a different phase than those just diagnosed. Mary Anne
Thanks for all your supportive comments. I have loved being on this site and learning so much from all of you. Even tho Saturday was a really hard day, yesterday was a much better day after Joe got some rest from the trip. My sisters and our oldest daughter and family came to visit and Joe seemed to really enjoy it more than he has in the past week. The social worker from hospice is coming today. I think not having the schedules of doctors and chemo will be more relaxing. Joe seems to be in a very good place and that makes it easier for me. I will continue to watch your journeys as you have become a part of my life for the last two years. It has been 27 months since diagnosis but symptoms were there ten months before that so we have had a good run. I guess it is never long enough but when the quality of life is gone it isn't fun anymore if it ever was. I will say that this disease has strenghtened our relationship with each other and with our Lord and also helped us to think about using each day as best we can since we don't know how many we have left. Again, thanks for being here. God Bless. Mary Anne
I posted earlier today under general experiences and then found this topic which is exactly what I wanted. Joe entered the hospice program yesterday but he will stay at home for now. He can still move around the house but has really bad ascites and some swelling in his legs and feet. His appetite is gone and I was trying to get him to eat a lot of protein but now I am just going to let him eat what he wants, I want to make this time his choices including no Lasix if that's waht he wants. Two of our children are in town and two are out. Even tho I don't think his death isnot emminent at this time I think I will have them come in for a short visit so they can have some quality time while they can. We re also planning a weddingfor our daughter for December 27th but I don't think he can last that long. I see other people saying everything else seems unimportant now and I sure feel that way. I am so glad to find this site and this secton that deals with exactly where we are right now. thanks for those of you who have been so faithful in answering our questions and letting up spout off at times. I will keep in touch. God Bless. Mary Anne
I thought I should start a new topic even tho I posted on Charlene's post. Joe entereed hospice yesterday. We got back from Boniare on Friday night. He eanted one lat time to go there and say good bye to all our friends there. We have been going there for 12 years and it weas painful being there. He slept til noon and then just laid on the couch all afternoon and evening til it ewa time to go to bed. But he loved being there and our friends all casme to us. Our dear neighbors Ed and Jayne came down with us or we wouldn't hve been able to make the trip. Joe seem to be in the final stages. No interest in anything of this world, not much emotion, is eating just to please me but small amounts. His ascites is as bad as ever and we ren't sure if hospice will let him have it drained. He has no pain but his queasy stomach is back again. He doesn't want to take the Lasix anymore because it is too hard to hurry to the bathroom. I guess I just have to let him make the choice now. Our daughter is getting married on December 27th and he really wanted to see that happen but both she and I have said it is Ok if he can't hang on that long. He just wants it to be over. I have done a lot of crying as I watch people say good by for the last time. Now our family is coming over one by one to have some quality time. Two of our kids are out of town and I am not sure when to have them come in. It seems everything else in life has come to a standstill. I can't think of anything else. Thanks heavens for our faith and the word to sustain us. Our pastor in Bonaire came to the airport to send us off with a verse and a prayer. I don't know what has gotten in to me but I have been getting up in the middle of the night and writing poems about good bye. I am not a poet but God just seems to place the words on my heart. It is hard to try and plan a wedding and a funeral at the same time.
I guess that's it for now. I have been up since 2 unable to sleep so I thought getting some of it out might help. Thanks for being there day and night for all of us. Take care and God bless. I will keep updateing the blog. www.joesinformation.blogspot.com. Mary Anne
I also have not been on the site in awhile. My Joe also just went into hospice yesterday. He is just so tired of fighting. I have to let go. It seems easier now that the decision has been made. No more scan, no more tests. just peace with the Lord and isiting with family. Joe seems quite detached from everything, no TV. no music. It is hard to see sufh a vibrant person wither away. I am sure you are experiencing the same thing. I pray for your courage in these days and hope it will be peaceful. Mary Anne
My husband Joe was diagnosed two years ago and he just started Gemzar and Xeloda(which is an oral chemo) together in April. he seems to have no side effects from xeloda no but they had to decrease his dose after 7 cycles. He can only get the Gemzar every two weeks because it knocks the heck out of his blood counts , white, Hgb and platelets. His tumors which are in liver, lungs and spleen have not shrunk but they haven't grown since March so we are happy with that. Hope this info helps you. God Bless. Mary Anne
I know you must be disappointed about no surgery. When Joe was diagnosed two years ago he didn't have surgery as an option and thought chemo would just take away his quality of life so he did nothing for about 8 months, then went with alternative therapy which was prohibitively expensive and then in April we started conventional therapy. I was surprised to find out that the regular chemo was not nearly as bad as we feared. He usually continues to function quite well except for a really bad spell last week. Take a little time to process all that has gone on but keep reading this site and listen to others experiences with chemo and othe treatments. This site has a lot of great info on it. We will be praying for you during your grieving and hope you will find comfort in your decisions, whatever they are. God Bless. Mary Anne
I just picked up a book that someone recommended. She read it after her Mom had died and said she wished she had had it sooner. It is called Final Gifts written by two hospice nurses. I just started it today and I think it will be good. Pryaing for you and John that you will find some meeting ground and some comfort in the days ahead. God Bless. Mary Anne
Thanks so much for all you support. Just when youthink things are going one way, they change. Yesterday and today Joe has changed his outlook (after talking to our pastor) and now he says he will try and walk three times a week. I told him how i didn't think I could push anymore and he said I shouldn't give up. Has anyone ever experience Gemzar causing you to get so depressed. I suggested he not take it anymore but he said he is afraid not to take it.
Teresa, so sorry to hear about your husband and so young.
Today I went to lunch and a movie with a good friend and it helped just to get out of the house. The movie was bad but the time with my friend was great. do any of you caregivers eat to relieve the stress and then all you get is fat? I usually swim for my exercise but have had a bad shoulder so haven't been able to do that. But now I am going to walk with my friend and hopefully that will do two things at once.
It is an emotional roller coaster not knowing from one day to the next what the mood of the house will be huh? Thanks for being there and answering me. God Bless. Mary Anne
I am just catching up on this site after being away to visit our daughter in Phoenix for a week. It did not go so well. Joe had chemo on Thursday before we left on Friday and I knew he would be exhausted on Sat. and Sun but he never perked up the whole week. It was all he could do to get from the car to the restaurant to eat. We brought in a few meals and microwaved some leftovers but all he could do was sleep and watch T.V. the walk to the pool was even too far for him except one day. He says it is a chore just to get up each day. Physically the cat scans show no progression of the disease but he has mets to liver, lings and spleen. He has no pain but no desire to eat either. he probably lost about 5 pounds this last week. I think emotionally he is just tired of the fight. We talked about this and he agreed although he said he didn't want to die yet. I have struggled for a few months on whether to keep pushing for exercise and getting together with friends. He seems to be detaching so much. In the house, it feels like I am already alone. I talked with our daughter Karen who was hoping he would be around to walk her down the aisle(but that won't be happening until next year probably) and we think it is time to let go and stop pushing. How do you know? I know you aren't supposed to ask how long they have but when Joe was out of the room two weeks ago, I did ask the oncologist because his ascited is getting so bad. He said he thought 6 months. I don't think it will be that long. I think once you shut down emotionally your body just follows suit. We are Christians so we know he is going to heaven - it is just the time from now til then that is so hard. I read about John who doesn't want to stop trying. I wonder which is harder. No one in this situations has it easy. Jeff you being able to share both sides is really helpful. I just started going to a caregivers support group and I think that will be helpful. I also wonder about stopping chemo and see if he regains some strength. He has been battling this for 26 months so I know we have been blessed by the time we have had but it never is enough is it? Just needed a place to vent and have people understand what I'm feeling. Thanks for being here. Mary Anne
Well, we got the results of the cat scan and it shows no progression of the disease and no new areas - just more ascites. I am still wondering if people have had luck with diuretics helping with the ascites and if this is a sign that things are going downhill. any info would be helpful. mary anne
I haven't posted in awhile although I have been writing on our blog, joesinformation.blogspot.com. but I have a question I don't want the whole family to read. Joe started getting ascites in April after he was so sick with a blood infection and internal bleeding. Now he has had to have it drained twice in the last month taking off 2 liters the first time and 3 just last week. We are awaiting the results of a cat scan. He has mets to the liver, lungs and spleen. He is on Gemzar and Xeloda. They started him on Lasix a few weeks ago but it doesn't seem to be helping the ascites although it is helping the swelling in his feet and ankles. Has anyone else had results with diuretics for ascites? Also once that symptom starts, does it mean we are losing the battle and we only have months? I know no one knows for sure but I see this as a bad sign. I am a former nurse. Sometimes that is a good thing because I can see symptoms early. Other times it is bad because I know what is coming. I am joining a caregivers support group in September which I think will be helpful. We have been at this two years + and I know I need to keep my spirits up to deal with this but sometimes you just want not to worry for a little. Any advice would be helpful. Mary Anne
My prayers are with you. What a tough time you are going through. Hospice also has counseling for you. Maybe they would help you even before John agrees to it or maybe he would agree to at least listen to their program and then decide. My husband Joe is starting to have more complications and I may be facing ths smae thing in the next few months. I love all the support you get on this website. hang in there. Mary anne
My husband Joe is on Xeloda and is taking it one week on,one week off. He is taking 2000mg morning and night. He has done this for 7 weeks worth and had no side effects. Then last week he got the hand foot syndrome with red painful soles of his feet. The onc told himto skip a week and then lower his dose to 1500twice a day. He feels that taking it one week on one week off ,there are less side effects than taking it two weeks on,one off. This proved true for Joe up til now. He has had no nausea and is on Gemzar every other week along with the Xeloda. He is starting to have more problems with swelling in his feet and ankles and ascites(fluid in his abdomen) which was drained once., He is now on Lasix to help reduce the swelling. We have had two good years since diagnosis but I know we' re heading into trouble now. Just glad he doesn't have any pain yet. Guess if it doesn't go to his bones he might avoid it. So glad for this site and all the helpful answers. God bless you all. Mary Anne
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