Thursday, May 11, 2006

I have an aunt that lives in Canton. She mailed my brother Joe this newspaper article to give to me and my mom about my real dad. There were two parts. I only have part two. This is the article....

Canton Couple relate life-altering surgery after Cancer Diagnosis
(editor note: Part one Of Jim Scotts life-altering experiance was told in the Friday edition of the Daily Ledger. Jim was diagnosed with cancer in the esophagus in November 2004. In January 2005, he underwent major surgery ans had all but on-half inch of his esophagus removed. His stomach was pulled up to meet the bottom of his throat. In March 2005, Jim went back to the doctor for a return visit and to determine if he had healed enough from the surgery to begin the long and grueling ordeal of chemotherapy and radiation. During the course of the visit with the doctor, Jim and his wife, Kim, were todl that Jim did not have cancer and never did. There had been some sort of mixup, and it was a different person who actually had cancer.
Part 2 continues today with the struggle following the surgery and Jim's fight to recover from the surgery and from the distressing, but also good news that he did not have cancer. Correction: Part1 mistakenly said doctor's removed one half of Jims esophagus; it should have stated they removed all but one-half inch of the esophagus)


Part 2

Before Jim recievd the news about the mix up with pathology reports, a story was witten in the Daily Ledger about their ordeal, because this was a very rare surgery. The Scott's were facing Jim's declining health and a fight with Public Aid and Social Security. They had no income because Jim would no longer be able to work and earn an income to support the family. Before the surgery, Jim felt it was not necessary for Kim to work full-time outside of the home. he felt he earned enough to take care of them. Kim did work part-time as City of Canton ESDA Director. Even with no income coming in, Kim was busy taking care of Jim, which in the beginning was a full-time job.

Support came in immediatly from the community. People began calling the Ledger to find out how they could help and also sent the Scott's money. A woman from Flordia, who read the story on the internet, had also had the same surgery. She called the Scott's and later sent them donations. Friends were also planning to hold a benifit to help with rising medical and living expensies.

Following the surgery, Jim did not want to be left alone. His fear came through then.

"He did not want me to out of his sight for more than a few minutes at a time." Said Kim. "Now if Im gone from home for very long, he calls me and wants to know when I will be home. It's like he knows nothing bad will happen when I'm there.

Jim's sisters, Pat Pierce and Candy Whetstine, along with his brother, Bob Scott, who is waiting for a lung transplant, were right beside them to help out financially when times were really hard. Kim's children, Laura and Kenny, were always nearby to lend their support, as well as help around the house whatever needed doing.

Jim and Kim relied on friends Jim and Janet Morse and jeff Alexander to pick up the slack because Jim could no longer handle every day jobs around the house.

"I cant thank enough everyone who sent prayers, cards, letters ,words of support and donations" said Kim. "The support and generosity was greatly appreciated. I also wanted to thank Graham Home Medical Supply for their generosity."

Following the news of the misdiagnosis, or mix up of the pathology reports, Jim and his wife returned home to try and come to terms with all they had been told, and try to comprehend what their futures would be like.

Their friends and family rallied around them it support, as well as disbelief of the error made in the reports.

They both basically knew what to expect after the surgery regarding wound care, using the feeding tube, and Jim's limitations.

What they didnt realize was how limited Jim would actually be.

Doctors assumed Jim should be well on his way to recovery, and nearly free from pain. This is very far from reality.

"Jim was like the Energizer Bunny before his surgery," said Kim. "As a truck driver, Jim kept going and going, then he would come home on the weekends and keep going and going around th house. Now, it's like someone has pulled his batteries out. "

"Now, I'm lucky to have the energy to get out of bed in the morning." Said Jim. His sleeping habits are poor now. Jim goes to bed at night and sleeps just a few hours at a time, because of the pain he is feeling. He has to sleep in a reclining position in the hospital bed so he can breathe. He is no longer able to sleep in the same bed as his wife.

"I hate going to sleep and then having to get up" said Jim. " I hurt so bad. When I feel bad during that day is when it really bothers me (during the night). I'm not sure I'm going to wake up in the morning."

Fear, as well as sometimes uncontrollable pain, is another thing that keeps Jim from sleeping well.

There have been many times he awakes Kim in the middle of the night, scared and crying. He is currently taking medicine for depression, as well as for pain and to help him breathe.

"At the hospital, sometimes I was not sure I was going to live through the night, the pain was so bad. If there had been a plug, I would have pulled it," said Jim. "I have never felt that way in my life and hope to never feel that way again. I dont think I would wish that kind of pain on my worst enemy."

The pain is sitll as severe ans has never gone away completely, he added. He still has lots of pain in the lower abdomen area where his stomach use to be. Now, it is rearranged so that his stomach is now up into his chest area, behind his lungs.

This causes Jim to become out of breath easily because the stomach has no room to expand, especiall after he has eaten. If he eats to much, he sometimes feels like he is having a heart attack.




Eating too much doesnt take a lto for Jim. He is suppose to eat 6 or 7 small meals a day, but usually eats just twice daily. Jim has a hard time swallowing food. He can sometimes manage to eat a ham sandwich, but only if the ham is very tender and the bread is soft, with no crust. Sometimes the bread gets stuck in his throat and chokes him. He also says mashed potatoes and chicken noodle soup are some of the mainstays of his diet. Lettuce is definitely a forbidden food. He was told to eat nothing rough, so as not to agitate his throat and stomach.

"I miss eating steak," said Jim.

Eating the little bit he can swallow, along with the food for his feeding tube, Jim is still unable to gain weight. Before the surgery, Jim was around 140 pounds. Now, he is unable to maintain a weight of more than 112 to 114 pounds.

Jim is constantly in pain in his abdomen area. Many fruitless trips to see the doctor have left Jim with no answer about why he is still hurting.

He is frustrated and scared.

"Right at this moment I'm scared," said Jim. "There are some days I am, like when I walk out across the backyard to our Morton building and I run out of air." Cold days are especially difficult. He recalls one day when he was walking outside and thought he was going to pass out.

" I had to get into the building and into warm air," Jim said. "I didnt know if I was going to make it. I cant even take the garbage out to the front curb."

Since his original surgery, Jim has had around 25 additional surgeries, a combination of the throat dilation and replacing his feeding tube. He has had it replced three times. One of the feeding tubes broke and two of them fell out and had to be replaced.

Unbeknowst of Jim, after the surgery doctors told Kim that the life expectancy of a person who had undergone this type of surgery is three years. However, that is an estimated life expectany based on a person who has had this surgery and no cancer, such as in Jim's case.

At one point, Jim asked the doctor how long he would have survived if he hadnt had the surgery. The doctor told him he probably would have live 10 to 15 more years.

"I would have had to think about it for awhile, but I dont think I would have had the surgery had I know that," siad Jim. "Im 50 years old, in 10 to 15 years, I would have lived to be 60 or 65. I dont think I would have gone through it. Maybe I would have if Id started to get sick in about five years or so. I guess I should have asked that question before."

Jim said he also asked the doctor id signs of caner should have shown up in previous bloodwork.

"I have been asked so many times how this has changed my life. My answer to that is for Jim--He is so fragile, confused at times, and has memory loss, is sick all the time and has no energy," said Kim. "When I hug him or hold him when he cries, all I can feel is bones. His legs cramp all the time. He is in constant pain and never has a break from it."

"Jim and I have been together for more than half of my life. We expected to grow old together. That dream has been taken away from us. I have watched Jim. I have watched Jim grow old by himself and I can do nothing about it. All I can do is stand by and watch it happen," sid Kim. "I expected to have a long, happy marriage with Jim. I dont believe I have 25 or 30 more years to spend with my husband. On Jan 4, 2006, it was one year since Jims surgery. We dont know if well even have two more. This is not what we planned and it all could have been avoided. For now, my goal is to make Jim happy and give him whatever he wants."

The Scott's have been asked why they did not get a second opinion before consenting to such life-altering surgery.

"We got opinions from three different doctors and they all agreed with the dianosis that Jim had cancer," said Kim. "Three opinions and there was still and error. I dont know what the answer is. How many opinions should you have to get?"

They have asked the doctotors about the other person who went undiagnosed after the mix up with the reports. At first, there doctor tolf them he has not treated this patient, but he knew of the person and was doing all right. More recently, they asked the hospital administrator the same question. He told them he was unsure if there was another person.

Kim is confident Jum will beat this debilitating situation he has been pushed into. "He has jumped over every hurdle in front of him," she said.

Jim is not quite so confident at times. "I just may trip over the next one," he said.

Him has many concerns about what his life will be like bow. He has discussed the fact that the doctors have told him about the three-year life expectancy and talked to her about what to do with some of his personal items.

Not only does Jim have to deal with fear, pain and uncertainty, he feels quite a bit of anger also.

"I hurt, I cried, and I got mad," said Jim. "I didnt know how to feel. I did feel angry because they screwed me up. I've been mad ever since."

"Every motion that a person could feel, we have felt," Kim added.

"Id like to find out who the person is who actually made the mistake," said Jim. "I'd like to know because they've likely killed me.





Well thats the whole article. I have no idea when this article was published....But yea...There is my long post.

1 Comments:

At 11:17 AM, Anonymous Anonymous said...

That is incrediable. Makes you value life and where you are now. Thanks for sharing this story Tessa. I will be praying for your Dad!
LYL

 

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