About Me

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St. Charles, Missouri, United States
With all the technology we have in this world why is it so hard to find a cure for cancer?

Thursday, September 30, 2010

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

Tuesday, September 28, 2010

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

Monday, September 27, 2010

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

Thursday, September 23, 2010

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

Wednesday, September 22, 2010

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

Monday, September 20, 2010

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

Friday, September 17, 2010

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

Wednesday, September 15, 2010

Up in the mornin...

Been up most of the night because he is, roaming through the house, knocking things over, yelling at the dog and the cat. Then finally around 5:00am I caught him headed out the front door, both socks on one foot, jogging pants on backwards, no shirt, keys in hand and headed for his doctor's appointment. Honey, you can go back to bed it's way to early to go to the doctor. "Are you sure, what time is it, I'm dressed all I need is my shoes on." Really, honey look outside it is still dark, it's only 5:00am you don't have to be there until 8:30, if you will lay back down for a while I promise I will get you up and make sure you get there on time. "Okay, if you say so, I'll lay on the couch for a little bit longer." I knew he shouldn't be driving so I got a shower, got dressed, and drove him to the doctor's office. All the girls at the reception desk were surprised to see him today, he didn't even have an appointment for a blood draw or anything. Thank goodness for those people at the cancer center, they did a blood draw and got him in to see the doctor. This time instead of trying to explain to them about his confusion I let him answer all the questions. Doctor, "How many pain pills are you taking during the day?" Him, "Well I take one at 7 in the morning, or 8 or 9, then I take another one, no wait I take one at 8 or 8:30 in the morning..... you know if they take away my CDL I will lose my job." Doctor, "Okay, let's get him admitted and see what's going on." Today there will be another full body scan, pain meds, and I won't have to stress about whether or not he's eating today.....

Monday, September 13, 2010

Donut shop

After Church yesterday he decided he wanted donuts. Fine, do you have enough cash on you to get donuts or do you want to use your debit card? "No I don't like using my debit card, I need to get some cash." Okay so I head for the bank (opposite direction of the donut shop). "Where are you going, I told you I wanted donuts." I know but I have to go by the bank to get some money first.... "I don't know why you're doing that, I want donuts." I know honey but you just said you didn't have any cash and you didn't want to use your debit card. "I know I told you that but I'm telling you now that I want donuts." Do you want to use your debit card at the donut shop? "Why do I have to keep telling you this, no I don't like to use my debit card, I just want to go to the donut shop." Okay, we'll go to the donut shop just give me a few minutes I need to make a quick side trip. So I pull into the bank by the ATM machine and he calmly hands me his debit card and says "Just get me $40.00 I don't need much more than that." Okay sweetie, you want to go get some donuts after this? "Sure, we can do that." It is what it is!!! vicki lee

Friday, September 10, 2010

Hallucinations...

Sitting at the dinner table last night he picked up the WHITE plastic salt shaker and began to turn it around in his hand. What are you looking for Babe? "There is an ant crawling on the salt shaker." WHAT?!?!? How did an ant get inside the salt shaker? "Not inside it's crawling right there on the outside of the shaker." HUH, the shaker is white the salt is white, there is nothing of any other color, let alone an insect, crawling anywhere on the shaker. Honey, I don't see anything, "I'm telling you it's right there, well now I can't see it, maybe it crawled inside or it's on the table." Now I'm moving all the dishes on the table looking for something crawling around, I even took the lid off of the shaker and looked inside and around the lip, nothing! Bern there isn't anything there, see (showing him the opened shaker). "FINE, you just had to prove you were right and I was wrong didn't you, couldn't take my word for it, I'm telling you I saw an ant crawling around on that salt shaker!" Okay, if you say it was there, it was there..... I know folks are praying for my husband but I'm starting to think I need to start asking them to pray for me, not sure how much more I can take. I'm tired and scared and hate this disease more than anyone could every fathom..... vicki lee

Wednesday, September 8, 2010

Being rude!

So, another grocery store trip (he still doesn't want me going alone). We were walking through an aisle and he is in the middle and there is a lady behind us trying to go around..... Bern you need to move over just a bit. "The hell with em let em go around!" Now I'm embarrassed and look at the lady behind us, excuse me and then I pull the cart to the right and let her go by, she just smiles and goes on. Now I'm really upset, Bernie, I know you're in pain and I know you're tired but that is no excuse for being rude and inconsiderate. "You're right." Then I got to thinking about it, he has every right to be rude and inconsiderate sometimes. I don't know how gracious I would be in that situation. He never gets enough sleep, walking is a huge chore, his back aches all the time, his legs won't hardly hold him up any more. Maybe I was a bit to hasty in berating him, maybe I should have handled it differently. Who knows anymore, I'm tired too, my back hurts sometimes too but I'm not rude to people, I try to be accommodating... This life with cancer is starting to get really hard to navigate in, never knowing what to say or how to say it, trying desperately to not treat him like a child (even though he acts like one)..... vicki lee

Monday, September 6, 2010

Passing by...

So, I have been off work since Thursday of last week, took the dog to get neutered on Wednesday night and got back around 5:30 Thursday evening. We had planned on going to the lake but things didn't work out so we stayed home. Was hoping to hook up with friends at some point but, unlike my life, they have lives of their own and they all made plans. I know I shouldn't feel this way but I feel like my life is just passing by, all I did most of the last 3 or 4 days has been sit here and watch him sleep. He isn't sleeping in the bed again, so the minute he sits in the chair he's out. I've tried to get him to go somewhere or do something but he just says no I don't feel like it. We did go out and buy a new TV because our old one was just about gone, but we weren't in the store 5 minutes before he started getting winded and needed to sit down. I just don't know how to feel and I don't know how to act. If I go places without him, I'm afraid people will think I'm a heartless bitch for leaving my sick husband at home by himself. But then the very few times I've gone somewhere without him I don't feel right, it's like part of me is missing. BUT, I'm not that old and I just feel like my life is just passing by every time I look at him sleeping in that damned recliner.... vicki lee

Friday, September 3, 2010

Holidays

Happy Labor Day weekend!! So I've noticed that he looks like he's losing weight again, so I checked to see how much of the liquid appetite inducing medication he had left. He still has a small amount in one bottle. He probably should have refilled the prescription last week. Hey Honey, have you been taking your liquid medicine every day like you're supposed to? "No, I take it when I remember it." Honey, you really need to take it every day like you're supposed to. "Well I noticed I was kinda looking fat, so I thought I would back off the medicine." ARE YOU KIDDING ME!!! Here's a thought for scientists and those folks that invent new medicines. How about inventing a pill that mimics the affects of my husbands cancer, the weight loss aspect, for women like me that struggle with their weight! I mean really, he "thinks" he's gaining weight so he just stops taking his med?? Ya know, I've said this before, cancer sucks (in any form) but being overweight and trying to lose and struggling with it... that really sucks!! vicki lee

Wednesday, September 1, 2010

Anxious

So, after work today I will be on vacation for a couple of days (wish we were doing something fun), and I am taking the dog to Monroe City (about 3 hrs away) to get neutered and have some puppy teeth pulled. I am driving up tonight, surgery is tomorrow morning, and I am driving back tomorrow afternoon. Why would she go that far away you might ask.... because it is less than half the cost at my vet here in town. Anyway, he is not going with me because he doesn't think he can do the car ride up and back so close together. Here's the thing, the thought of leaving him alone and being 3 hours away makes my stomach ache and little beads of sweat pop out on my forehead and upper lip. I'm surprised I haven't done the bathroom every 10 minutes thing, which so often accompanies my bouts of anxiety and stress. He says "I'll be fine, my brothers are close if I need anything." That is true but I don't want anyone else there without me. You might think I am a control freak, in some cases you might be correct, but the reasoning in this instance is, I don't want his family making any kind of medical decisions for him. We have talked about this stuff and I know what he would want and what I would be comfortable with. MMMAAANNNNN am I just stressing over this too much, is this an issue that really is a non-issue, can I really control every single thing that happens with him??? Gotta love the uncertainty of living with this dreaded disease.... vicki lee