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Old 10-21-2006, 04:49 PM   #1
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We have Hospice Care Now - Renea

Hi All,

Itís been awhile, I donít know where to begin. My husband was just released from the hospital on Thursday, October 18, 2006. I will try to sum things up. His feet had swollen really bad and he could not eat or drink anything. We went to the emergency room and he was admitted with a really bad infection and white blood count of 32,000. He was extremely dehydrated. For one week he did not eat in the hospital. They gave him something called Megestrol to help with his appetite. It actually worked because Marinol did not work. We were told that his white blood count had elevated to 39,000. We were also told that the cancer had spread to his spine, bone, and liver. He has a very difficult time urinating. They found an infection in his colon called Cediff (spelling?) He was treated with some very powerful antibiotics especially Vancomycn. The blood white blood count went down to 25,000. He saw all his doctors we were finally given the opportunity to get a second opinion since our insurance changed effectively September 1, 2006. His Onc. said that the 4th line chemo would not work since we had not been successful with the 2nd, and 3rd lines. They want to try him on Gezmar (spelling) but my husband is too weak and his breathing is extremely labored. They adjusted his pain meds again two days before we left to two 100mcg Fentynl patches. He had one on each side of his chest. He became a complete and total zombie. He could not open his eyes and he did not know his name. I called the Pallative Care people and had the patches removed immediately. He sort of got his senses back. He still has periods where his memory is fuzzy or lost or he will carry on conversation without having his cellphone at his ear. When I remind him of this he thanks me. I went to pick our children up when he was released and he was constantly talking to himself. I pretended to be in the conversation also so the kids would not notice. He was supposed to tell our 7 year old daughter and 9 year old son about his cancer and give them an opportunity to ask questions. All his doctors had concluded that Hospice would be the best thing for us now. My husband was so out of it when the Hospice lady came to the hospital to speak about their services. He fell asleep during the entire presentation. I asked them to return later. The next day he woke up in a shouting rage. He felt he was betrayed and that somehow somebody was trying to trick him into hospice care including me. I have never felt so emabarrased as I did at that moment. I was the main person saying to please discuss these things with my husband when he is coherent. One day he was a basket case and the next day he seemed to have hold of his senses. He was sent home with the ability to return to any and all of his doctors. His breathing was extremely labored the night he came home. He has really bad tremors and jerks and moans all night. Then out of the blue the next morning, he asked if it was too late to call the hospice people and have them deliver the oxygen he so needed and to have the nurse come by to check on him. I said I would call only if he has taken enough time to think about it over the weekened. He wanted it started right away. This is just one story. I could right some additional pages about the family side but I wonít. Itís tough enough to see him suffer but when family wants to start to judge you from out of state itís hard.

God Bless and Take Care

Renea
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Old 10-21-2006, 06:26 PM   #2
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Re: We have Hospice Care Now - Renea

Renea,
I am sorry to hear about everything you are having to endure right now. I can't believe that your family is being so insensitive when you are trying so hard just to keep walking through all this. I have followed your posts for a while now and your husband has endured so much.
Much of what you mentioned had happened to your husband, even the hospice situation, happened to my dad- he (on a very confused day) sent hospice away, refused to sign the papers, but then later,had a change of heart. He felt like we were all trying to trick him.
Hospice was wonderful, espescially if your husband is like my dad was in not wanting to go in to the doctors unless he could no longer endure the pain.
I am truly going to be praying for you both. Best of luck.

Jackie

 
Old 10-22-2006, 06:03 AM   #3
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Re: We have Hospice Care Now - Renea

Oh Renea, I am so sorry to hear this latest turn of events. Your poor husband has been through so much in the recent months and it's been inspiring to me because he is such a fighter. I know how difficult it is to admit hospice care is needed. It's like saying to the cancer, you win. But, they are wonderful people and can be help not just to him, but you. We really like our hospice nurse, he is a bit dry and amazingly Bud with his warped sense of humor has taken a real liking to the man. I will pray for you to stay strong and able to face your accusers with a clean conscience and clear mind. I went through a similar period, but now, after seeing for themselves how Bud is doing, they have rallied behind me and all of us work together for his benefit. It isn't until people see with their own eyes and hear with their own ears and come to an understanding of how day to day life is so complex with trying to take care of the patient, other family members, jobs and house. I know of one lady who videotaped the several months her mother was in the cancer struggle, and after her passing, she shared her chronicle with other family members. Some came to her and asked for forgiveness for their inability to appreciate what she tried to do. I personally did not want to do the video thing. I want to remember my husband the way he was before the monster came along. I don't want to have to revisit these hard hard months again and again....

Take care and know that you are in my prayers....Jan

 
Old 10-22-2006, 11:08 AM   #4
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Re: We have Hospice Care Now - Renea

Renea: Your story is just heart breaking. How we die seems to be much more fearful then the actual dying.

God bless you and your husband.

linda

 
Old 10-22-2006, 05:27 PM   #5
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Re: We have Hospice Care Now - Renea

Renea, I am so sorry to hear what has been happening in your life. Your poor husband has had such a rough time for such a long time. It makes me angry to think of one person having to endure as much as he has had too. I can't even imagine it.

I am sorry to hear that you are now at the point of hospice as are Jan& Bud and my mom. I know how wonderful hospice can be but just starting it makes everything seem so final and that brings in a whole new set of emotions.

I feel so sad for your kids but Kids are pretty amazing and can handle more then we give them credit for. Three of my cousins lost their dad to lung cancer when they were all little and I know they missed him alot but they did fine and all grew up to be wonderful adults.

As for the issues with the rest of the family, it is way too easy to judge others when we are not walking in their shoes. If they have not been involved in his day to day care they will never know what it has been like. My sister and her family visited last weekend and it was a real eye opening experience for her to see my mom this way. I think she now understands what I have been dealing with and is sorry she has not been able to help.
When the family is giving you a hard time just try to remember that in the end the only opinion that counts is your own, You know you have done the best you can and that is all that matters.

I know I have been there for my mom and done the best I could by her so in the end I will have a peace in my heart because I know I could do nothing more. I can't change things but can accept them as a part of life.If anyone finds any fault with that that is their problem not mine.


Remember you can come here to scream, rant, rave, vent if you have to as too many of us do understand! Take care. God bless you and your family during these rough days and always. JanMarie

 
Old 10-23-2006, 08:21 AM   #6
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Re: We have Hospice Care Now - Renea

Oh Renea,
I was just overhwhelmed reading all you and your husband have gone thru. First of all, how are the kids? Oh, my heart aches everyday knowing what our boys are going thru knowing how sick their dad is. We told our boys but they are older, 17 and 10. How are you holding up? You always sound so strong and know you have the relative problems. (geez, story of my life...I am even the cause of my husband's cancer per my MIL...it was HER mom who died at 52 of cancer so where does she get off!) How is your husband doing? I hope he is better and the kids are enjoying some time with their dad. I know it is not easy with school and homework and extra activities. Believe it or not I was silly enough to throw one more thing into our schedule, but felt it was the best for our youngest...I put him in Taekwando and it is doing him some good. I had been thinking about it for quite a while and then when I went to sign him up for his religious class Sister Maria even suggested it is good for kids. (just mentioning if it might be of help)
I don't know how you do it and admire you along with so many others on this posting board. I just want to give you a big HUG. You are in my thoughts and prayers Renea and just speechless whenever I hear hospice has been brought in...seems so final and very unfair to a man who has fought so hard to be around to raise his family. Keep us posted and if you need to scream, just send a posting with screams...I pray your husband is doing better and can smile and enjoy you and the kids without too much pain. Stan did not do well with his 2nd or 3rd line either and they continued the 4th, but we are having doubts. Need to run...he is having chemo, but he was up ALL NIGHT in severe pain. (not sure how he will get thru chemo today!)
Kim

Kim

 
Old 10-24-2006, 05:23 PM   #7
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Re: We have Hospice Care Now - Renea

Thanks everyone for all your replies. This board is the only place that I can find comfort and not get reprimanded for how I am caring for my husband. Today my daughter started to question my husband about the nurse and the equipment that they have brought into the house. My husband wants to go someplace neutral to have a talk with the kids about the lung cancer. He showered today and looked very fragil. He now weighs 123 pounds. He use to weight 152. He has an average appetite and tries to eat at least three times a day to keep his strenght up. Today he just slept off and on. He often sleeps in the sitting position and still has trouble focusing after a long day. The swelling on his feet has gone down quite a bit. I enrolled my daughter in dance and my son plays soccer. I needed an outlet for them to have some free time. My husband even makes an attempt to go to my sons soccer games no matter how much pain he is in. I cooked a big ham with all the trimmings for our family dinner tonight. My 7 year old daughter decorated the ham with pineapples and red cherries on a large platter. We had a great time! Afterwards we had slices of hot homemade apple pie topped with cool whip. You can't beat that for living in the now.

I am trying to have at least 2 to 3 of these sit downs a week just like we use to before my husband got sick.

Thanks again everyone and may God continue to bless each and every one of you!

Renea
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Old 10-26-2006, 10:03 AM   #8
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Re: We have Hospice Care Now - Renea

Renea,
Stan is napping so a quick reply is in order since I need to run errands.
I do hope the talk goes as best as can be expected. To this day I feel the hardest thing in my life was telling our sons their dad had cancer. I did it on my own since Stan cannot handle emotional stuff very well. I will never erase that terrible memory(as much as I try) and remember my son's expression on his face to this day. Our oldest has been more helpful lately as he sees his dad's condition worsen. I am thinking about your kids so much...so painful for them and you just want them to be young and enjoy life and their childhood. We know life is not fair and we always want to protect them, but sometimes you cannot protect them from pain...guess it is part of growing up, just let them know they are LOVED. My husband and I asked our oldest what he would like for Christmas, any suggestions and he said nothing, he is fine with what he has he said. (meaning life is good since dad is here, hard for teenage boys to come forward with the words) That is great you keep the kids busy and an outlet is perfect! I hope your husband can continue to stay strong to see his son's game. Your dinner sounded perfect and how special! Yes, I try to have about 4 family dinners a week too, but our oldest has a tough schedule being a Sr. in High School.
Off to run errands and check on Stan. I certainly hope this 4th line is working, but based on the way he is feeling I have big doubts.
I am thinking about you so much Renea and when you are having a tough day think of me here in Irvine and holding out my arms giving you a big hug.
Kim

 
Old 10-26-2006, 04:53 PM   #9
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Re: We have Hospice Care Now - Renea

Hi,
I was just in your place a few months back. Hospice will become your life line. You have to be strong and you HAVE yo put your family who are not behind you out of your mind. On the days that it seems that your husband is not here in his mind and he is talking to others: he is. He is talking to others who have already gone. Just be patient with him and always remember on teh days that it seems like he can not communicate with you he can always hear what is going on around him and I do mean everything!!!! Whem the time came for me to call Hospice in for my mother it was hard but I knew i had to do it. My family thought of no one but themselves. You will see that you are much stronger than you think and so is your husband and your children. Keep strong to your faith and to your family. Now is the time for you talk to your husband and say the things that you know needs to be said, take advantage of every moment that you have together. And on a nutritional note if your husband like ice cream you can add Ensure to it and re-freeze and it is just like ice cream. My prayers are with you.

 
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