Sleep

How can this man keep going?? He has not been to sleep longer than 3 or 4 hours for over two months now! And I haven't slept sound since last Friday! Took him for radiation this morning and they are going to check his last CT scan and see what is going on in his left shoulder, if it is showing signs of involvement then they will do some radiation there. We talked last night about him being scared and he started to cry and said, "Of course I'm scared!". That is really hard to hear coming from this man who has been so big, so full of life, so sure of who he was as a man.

CANCER SUCKS!!!

vicki lee

Decisions

So, I talked to the nurse at the cancer center yesterday. Here is what she said!! If his confusion issues clear up he can definitely start chemo therapy again. It will change his prognosis but time limit is up in the air, if we do not resume chemo then the 3-6 months stand. He is in a lot of pain because of the cancer spreading in his bones (hip, spine, ribs & shoulder) I don't know what to do! Some of his family are saying that the only reason I am still around is I'm waiting for him to die! He has actually been dying for a long time and if I wanted to I could have been gone a long time ago.... I'm with him because I adore him, he's my husband, my life, my heart, and I took a vow in a church that means a lot to me. I wish they would be the ones to make this decision and to go to the doctors and listen to what they say and stay awake with him all night long and listen to him struggle to get up and down, to even breathe sometimes. Some people say, tell him what the doctors have said, some people say don't tell him.... I don't know what to do, I don't know what to tell him or what to say, I don't know what to say to his family, I don't know what to say to our children or grand children. I have to make a decision about what my decision will be..... I hate cancer!! vicki lee

Hope

So they sent him home yesterday on his 70th birthday!! I was totally caught off guard, thought I would have a couple more days to get his "volunteer" schedule set up. Most of his brothers/sisters were at our house to celebrate, which was great!! They brought food with them which was a huge help to me since I haven't gone to the grocery store in almost 3 weeks. We have pretty much made the decision to sell his motorcycle and buy a camper to put up at Mark Twain Lake with the rest of his family. However, one of his sisters is just furious that I won't be selling my bike and that I would even consider going riding and leaving him at home. She is convinced that if he sells that bike he will give up all hope and quit fighting his disease. She was almost sitting in his lap and talking a blue streak about him not selling that bike!! I wish she understood where we were both coming from. He knows he will never be able to ride again, but buying the camper and putting it at the lake gives him hope by having something new to look forward to. And it may sound really selfish on my part but I'm not sick and I can still ride, plus I'm not ready to give up my scooter!! I can still go riding with my girlfriends and getting out of the house, away from his illness, and getting in the wind is my therapy and helps me cope with the whole situation. Some people's idea of hope is nothing like what others "think" it should be.... vicki lee

Prognosis

As long as he has been sick, after all the doctor visits, all the nights sleeping in chairs at the hospital, not one time did a doctor ever, ever, give me a time limit on his life..... until today. He absolutely cannot be released from the hospital and go home without 24 hour care. That means he can come home but someone has to be with him during the day while I'm at work. His confusion is random and he has very lucid moments when he sounds like the man I married. Then he talks about being locked up in a cage and searching the hospital halls for me because he's lost me. His oncologist has made the decision to stop all chemotherapy treatments until the confusion stops. They don't expect the confusion to stop therefore no more chemo, in which case they have given him the prognosis of 3-6 months of life left. They will continue radiation treatment on his spine to try and control the pain but that's it. He is allergic to morphine, and any narcotic drugs only add to the confusion so they don't want him to take any more of those. My prayer is that I can line up family and friends to take turns staying with him as I CANNOT afford a private duty nurse at $900 per week, or an adult "day care" facility at $80 per day. Medicare will not pay for either one of those and we won't qualify for Medicaid because I make too much money. Can't type anymore, exhaustion has completely taken over my mind and hands..... vicki lee

Family meeting

Last night when his brother and sister-in-law came to visit he was still pretty much out of it. Asking his brother if he saw the dog behind the bed??? WHAT?!?!? Then telling his brother that there was a guy in there last night trying to steal him, and he was trying to get information out of him. I talked to the Doctor last night and she said again... "He CANNOT go home by himself. So, my next step is to wait for the EEG results and see how his day goes. If the doctor still says the same thing I am going to call a family meeting this weekend and let them all know what I might be forced to do. I can hear it now: 1) My sister-in-law Rose's husband has some dementia and she takes care of him why can't I take care of Bernie 2) We will all take turns coming over and helping out with him (that won't last long) 3) You don't care about him you are just worried about yourself 4) I guess you don't love him enough to take care of him.... I am DREADING this, I don't even know for sure what the right thing to do is. I can't affrd a private duty nurse, he won't stand for being dropped off at an adult day care kind of place, he is still with it enough to know what a nursing home is. Here's the thing, he was up again this morning at 4am getting dressed, and the when the nurse asked him where he was going he said I'm getting in my truck and going home!! I would have to sleep with him tied to me to make sure that doesn't happen at home, and again what do I do during the day when I have to work? Never in a million years did I thing I would be dealing with this, I thought I would come home and find him in the back yard dead from a heart attack!! vicki lee

1939

Well, I thought he would be coming home today but I don't see that happening now. This past weekend he was doing fairly well. Had a ton of visitors and he stayed awake, and participated in the conversations. I did find out that he told one of his sisters that he was thinking about selling his motorcycle and buying a camper, then when I asked him about it he said, "I don't know what I'm going to do." Fine with me, it's his decision not mine! Then this morning when I got to his room for nurses rounds, things were not going well. He was half dressed and half undressed, wasn't sure what day it was and couldn't remember my cell phone number nor could he dial it on his cell phone correctly. After about 8 times of trying to see if he could do it, the battery finally went dead and I put the phone in my purse. Then I got a phone call from his nephew Billy asking me if things were okay with him, I said they were okay not great and wanted to know why.... apparently he tried to call billy 7 times between 3am and 5:30am this morning. Then I got a phone call from the doctor saying that she went in to see him and was asking some generic questions to see how the confusion was doing, when she asked what hospital he was in he said DePaul, no wait, Barnes St. Peters. Then she asked him what year it was and he said 1939, she told him not it's actually 2010. Then she asked a few more questions, he answered some and couldn't answer others so she asked what year it was and it was still 1939. After much consideration and asking him a couple more times the year she decided it would be a good idea to call in a neurologist...... vicki lee

Here we go again

So he has been in the hospital since Wednesday this time.... have not a clue as to when they might send him home, at this juncture I'm not sure I want them to send him home just yet!! I still need to go through the house and gather up all his meds so I can hide or destroy them. What a nightmare, he pulled his IV out the other night and then last night was wanting a pair of scissors so he could cut the other one off because it was bothering him. He did look really good this morning, sitting up in the bed, color back in his face..... then it started, "Where's breakfast, can I get a cup of coffee first, you're gonna need to bring me some clean clothes up here." Then after his food came, "Here you eat this, I got it for you, don't worry about how much it costs, I got it for you, I know you're hungry, do you need some cream for your coffee?" WTF!!! As far as I can tell my life just took a dramatic turn, I can see right now that it will up at 6, fix his breakfast, give him his meds, get dressed go to work, call at noon to make sure he eats his lunch and takes his afternoon meds, straight home from work to get him his dinner, make sure he gets a bath and PJs on, give him his night meds and put him to bed.... for better or worse, richer or poorer, in sickness and in health! vicki lee