My Time With My Husband,
Willis "Butch" Conley

I feel I had to begin this page to help others who are giving care to a family member. I don't know how much help I can be, but I will certainly try. You have guilty feelings when you try to take care of someone who "takes the ultimate journey" because (I think) that we are so used to trying and succeeding at what we do. I guess that instead of thinking, I tried (to save him) and failed, that I need to think I tried (to help him comfortably make his journey) and succeeded. If I or any of us don't think that way, then we will have problems. It's been two years and I still am having problems.

Please don't forget to sign our guestbook - we can all help each other! The "add-a-link" didn't work too well, so if you link, let me know.

The above picture is of my husband "Butch". He was 34 when he was first diagnosed with colo-rectal cancer. This returned in 1991. He then was diagnosed with laryngeal cancer in December of 1994 and bronchial cancer in January of 1996, then head, neck and lung in July of 1996. He passed away on October 10, 1996.

This was an extremely long battle for him and people wondered why we chose the treatments that we chose. I say we because we were in this together. Butch actually chose the treatments and I backed him up. People tend to forget the feelings of the person who is ill and people also tend to think they know better than the person who is ill. This is really not true and do not let people try to convince you of this.

Butch was intelligent enough to make choices of what he felt he could stand. I personally think he stood more than I ever could, but he had hope and he wanted to stay. The first surgery was a permanent colostomy as he was in advanced stages and had gone to the lymph nodes. This was very hard on his emotions about his manhood. We were a loving family and we were there to support him. His second surgery was not as severe and he had a quick recovery time.

The 3rd surgery on this throat was a tracheostomy and he was told that with radiation, he should make a full recovery. But he started losing weight and had a hard time breathing again after a few months. The doctor said it was scar tissue and he would take care of it later. Butch then thought he was missing his mouth when he was drinking his tea, but as it turned out, he had a fistula, which is a small hole, near his trach. Mind you, he had just been to the doctor. As this turned out, the cancer was spreading and the doctor wanted to operate again. When Butch went in for this operation, the doctor cut into a very large tumor, sewed him back up and told us there was nothing more he could do, but he knew someone who might be able to help.

We went to the Arthur G. James Cancer Hospital and Research Institute, which is where we should have gone to begin with and they truly tried to help. Butch had already gone through radiation after the first throat surgery and ended up with 3rd degree burns and an infection, so the tissue was very damaged. They suggested a new surgery, medistinial (sic) surgery. They moved everything around - shoulder to throat area and skin grafts off of his legs to his shoulder area. They then had to remove all but 1/4" of his windpipe and make a new one out of his chest and shoulder area. This was very painful for him and he complained more about his legs than anything else. After he came home, we made numerous trips to the hospital to replace the plastic tube in his chest that kept coming out and collapsing, and had to call 911 a couple of times. He had trouble keeping things down and we had to keep him on a liquid diet for awhile. He was also on oxygen, IV's, and tube feedings for quite a while. In July, 1996, we thought he would go in for reconstructive surgery so he wouldn't have a tube sticking out of his chest. This is when they found the cancer was spreading to his shoulder (he had severe pain with this), neck and lung area. It is from this point that we came home and called hospice. The Kobacker House in Columbus, Ohio is who helped us tremendously. The James Cancer Hospital doctors and nurses were absolutely wonderful to my husband, in the fact that they made him feel important and useful. The Kobacker House had the same caring attitude.

Our Families:
My family was supportive in the way that whatever we decided to do - It was the right thing to do. This is important for the mental attitude of the patient. Butch was a very strong person and needed to feel in control, or let people think he was. Privately, we discussed everything. We both had Living Wills, this is important
His family - whatever we decided was, in their opinion, the wrong thing to do. This did not help Butch.
Friends - some helped by coming over, calling first, to see what they could help with. Asking what was needed and being there to talk to. I mean truly talk to and act normal with Butch and our children. By normal I mean sit around and drink tea or coffee and gossip about what was going on in our town and talk about things Butch was interested in. They also helped with IV's (a couple of them were nurses) and God Bless them when we had an IV emergency -even in the middle of the night - they came. (This only happend once) My family also sat with Butch when he became afraid to be left alone. We still had a son in high school and I tried to make his senior year as normal as I possibly could. People that sat with Butch also had to learn to suction.

It should be remembered that the patient's feelings and well being should always be first. His family and their friends thought I was starving him. I could not tell them otherwise, so I said nothing and took verbal abuse. They brought food that he didn't like, and he didn't eat it at all. They brought things such as chairs and rearranged the house because they thought it would make him comfortable - he wasn't and I had to tell them to come and pick things up. He wanted to eat, he could not. The children and I started going to pick up something to eat out because it upset him if I cooked and he couldn't eat. When he felt like eating, he would tell me and I would fix him what he wanted and felt he could keep down, even if it was midnight - which happened.

He became worse and could not walk without falling down. His sister came up to sit with him while I went to the bank and store. She said she would not let him fall. When I came back, she was in tears because he "fooled" her into thinking he was asleep and he fell twice while she was caring for him. Our son was in his last year of high school and was just getting over mono - he got to play one game that year and was made an honorary captain. The school officials arranged for us to bring Butch to the games and they were on standby to clear a path for our car to we could sit by the emergency squads and Butch would not have to get out of the car, but he never felt up to, nor had the strength to go. Butch did get to enjoy our little grandson for a while, Jacob was not even one year old. Our daughter has since had two miscarriages and severe dysplasia of the cervix which we think has been corrected. (These are the cells that lead to cancer). Butch was 48 years old when he passed away. Me, I don't know how I feel anymore, it doesn't seem real, things seemed to go so fast. I couldn't sleep in our bed for four or five months and then only when I bought another bed I miss him terribly and worry about our children constantly.

I will keep working on this page. We all need to be here to support and help each other. Doc was Butch's best friend and a man I had known since I was little because Doc and my Dad were in the Army together. Doc passed away two months after Butch did of very nearly the same thing. His wife "Mary" and I are still good friends and we talk all the time which helps both of us.

Over two years now and I still get the "washed over" feeling on holidays. My friend, Ruth, whose son's page is HERE read me the following tonight. We also talked about the strange things people say to you, thinking it is a good thing to say. I have added a page - HERE for things "not" to say to someone who has lost a loved one. You can add your "sayings" it might help vent. E-mail me.

"God gives us memories so we might have roses in December"
passage from the book "Roses in December" author: Marilyn Willett Heavilin

Isa. 57:1-2 tlb "The good men perish; the godly die before their time...no one seems to realize that God is taking them away from evil days ahead. For the godly who die shall rest in peace."

The butterfly is the sign of new life representing death as a transformation, not a finality.

Butch's union - Ohio Operating Engineers, Local 18.

LINKS

The Arthur G. James Cancer Hospital and Research Institute - wonderful staff!

The Kobacker House - extremely caring and accomodating.

Short Story about "Butch" - a tiny bit of Butch.

Our Family and Pictures - I love them all dearly and deeply.

Our Friend Albert "Doc" Troxel

Caregiver's Information - Very informative and helpful! Take a visit.