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Kaye's Story   -   My Journey

by Kaye Thompson

 
I am a wife of 40 years to a wonderful husband, a mother of 3 handsome grown sons whom I am very proud of, a grandmother to 3 fantastic grandsons, who are the apple of my eye. I have the desire to live and watch them grow – I love every bone in their little bodies.

The spring of 2002, I had pneumonia. At that same time, I started having severe night sweats. Many nights I would have to get up 2:00 - 3:00 AM, take a shower and try to go back asleep. Then I started having an itch under the skin and I itched constantly, miserable, from July until March I had this horrible itch. I carried a broken plastic hairbrush with me and used it as a scratcher; I thought I was going to go crazy I itched so badly. The doctor thought it was due to antibiotics I had taken for pneumonia. However, the itch continued after the pneumonia was gone – no relief. My doctor just passed it off. I went to an allergist – had test and no answer for the itch. Prescription of Zyrtec, I tried creams etc. with no cure. The night sweats and this terrible itch continued. Now the medical doctor did not think I had anything serious so I went on suffering.


Wacky Blood Work

Then, in the summer of 2002, I decided I would like to give life to someone by giving blood. The Red Cross was going to be at the Methodist Church in Lithopolis, Ohio so I called for an appointment. My turn and they took a sample of blood and said I am sorry we cannot take your blood YOU are anemic. Therefore, I left thinking oh well many people are anemic and I thought that’s probably why I am feeling so tired lately. So I started taking one a day vitamins. As I look, back I felt extremely tired but just thought it was my age and I hated to think that.
 
Fall is here and my husband is listening to the radio on his way to work and he called me to tell me a Research Company in Columbus is looking for candidates for a new diabetes medicine, as I was not having much success in getting my sugar under control. Therefore, I called and made an appointment. They gave me a complete physical, blood work and EKG. They made an appointment for me to come back in a week. A few days later the Research Nurse “Vickie” called and said: are you a normal healthy person? I said well yes I think so. She said I must repeat the blood work as my results came back all wacky. A little alarmed but not over suspicious.

I went back for the second set of blood tests. Vickie called again and says something is wrong but do not get upset it could be nothing. I want you to see your family doctor as soon as possible. This is early November. (I feel this nurse saved my life.) She was an angel sent by God. I would have done nothing without Vickie’s encouragement.

My medical doctor sent me to a Lab for more intensive blood work – same results – so let us repeat it. Still the same results so the doctor decided maybe it is the Lab, let us try the hospital lab. Hospital lab did same tests with same results. White cells, platelets were not what they should be. The pain has been almost unbearable since right before Thanksgiving. So I pray for strength to get through the holidays. My family knows something is wrong but I do not want to upset anyone with my medical problems especially with the holidays so close, I don‘t give them all the details. I made it through the holidays with God’s help.

By this time I was thinking horrible things like this might be my last Thanksgiving, Christmas etc. As I decorate for the holidays with tears in my eyes I am praying for healing in my body. As I decorate our beautiful seven foot tall Christmas tree – I am thinking this is the last time, I will put ornaments on this tree. I am in excruciating pain and I can hardly clean house without resting and falling over on the couch with pain and extreme tiredness, totally exhausted. We were having out of town guests for a Special Christmas Dinner and I want to do this with everything in me (again thinking this might be my last). It is all I can do to prepare a meal for 18 guests but unbelievably I pull it off without any one knowing I am sick.

The doctors never get in a hurry and I am telling my husband I need help! It is hard to describe the pain. It was more like hurting all the time and suddenly a little relief. I could not lie on my right side – the pain was so severe.
 

Anxiety

Now I need to insert a brief statement here about me - I live a very stressful life and I am trying to overcome this area of my life. Worry is one of my enemies. My husband is a self-employed carpenter and we do not have health insurance so because of that I put off going to the doctor. I regret that I did not seek medical attention long before I did because I did have some warning signals in which I ignored.

January 15th my doctor decided to start eliminating what could be the problem. She scheduled a colonoscopy January 15, 2003. It came back all is well. Unbelievably I am having less pain after the colonoscopy. Then my doctor decided that I needed to see a hematologist/oncologist. Now this is the end of January. Now I am really getting upset – an oncologist? Therefore, I put on my brave face and continue. I talk to myself and I am convinced this is not anything to worry myself sicker. Find out what it is and get it out!

The oncologist decides to send me for CT scan, upper GI, lower GI and some other kind of test where you drink – they take pictures and you drink and they take more pictures (whatever this test is) at this time the technician sees a mass the size of a grapefruit and they say it is communicating with the intestines.

On the day the oncologist has me scheduled for a bone morrow test – he discovered the problem might just be this mass. I am lying on the table scared because I do not know anything about a bone morrow test but it sounds painful with NO anesthesia. Then the oncologist comes in the room where I am lying on the table waiting for this bone morrow test to start, he cancels the bone morrow test and he says surgery sooner rather then later. This must come out immediately. Great!

The oncologist said at this time we do not know what this is – we cannot rule out cancer. Cancer, not me – cancer, no way! By now, I am in so much pain in my lower stomach that surgery sounds like a wonderful idea just get this horrible pain out of me! By now, I feel so bad I can hardly walk. Behind the scenes, I cry out to God in severe pain.

Finally, on February 27, I went to a surgeon and he immediately sent me to Mount Carmel (East) Hospital. He scheduled surgery as soon as a room was available – February 28, 2003.. This was the most horrible day of my life. I was in surgery about 5 hours but in recovery 10-11 hours. My husband Terry, son Gerry, and a close precious friend of 27 years, Naomi Schneider, were waiting for me. The surgeon came out told my husband it was cancer but they thought they got it all. They had removed a grapefruit size tumor, six lymph nodes and about 8 inches small intestine.

Finally, after waiting many hours Naomi told my husband to find out what was going on. Many hours had gone by and no one told them anything. Therefore, the recovery nurse allowed my family to see me in recovery for a few minutes. I am so sick I could care less. They could not get me awake from the anesthesia. Something was wrong with my kidneys – they were not functioning properly. A coke like substance was coming out into the catheter bag.

Finally, I am moved to a room. When I eventually wake up – I have a tube everywhere, they could place a tube, a central line IV. A drain tube in the bottom of my stomach, a stomach pump down my nose, a catheter, oxygen in my nose and with all of this - believe me I am thankful just to be awake. First thing I want is water! No Water – just a few spoons of ice chips for 12 days. Needless to say I was eating ice like it was food. Well I could not think straight because of the anesthetic and drugs (something they describe as 2 levels above morphine). The pain was still very severe.

I thank God for Naomi being by my side because Terry was no help (I guess men are just that way). My forehead is Hot, I guess from fever, I was so miserable and very uncomfortable so Naomi put cold cloths on my head for hours and then finally a nurse brings an ice pack. What a blessing to have a friend to be so kind and sacrifice hours for me. I know she would have rather been doing something more productive but she stuck right by my side. God Bless YOU Naomi! She came to see me every day or evening I think mostly evenings because as I remember she was the only one that could make me comfortable in the hospital bed at bedtime.

When you are lying in a hospital bed – time means absolutely nothing - so I need to apologize for being so selfish. Terry, Naomi and Gerry came every day to see me and no one knows how much I loved that! I wanted visitors 24 - 7. Gerry brought Jacob on Friday evening (The best medicine is to see your precious grandchild). Ginny and Harold, Kelli and David came all the way from West Virginia to see me on Friday and Saturday, I am sure I was not the best company for any one but I sure was happy to see them. Terry Jr, Gianna, Tyler and Ryan came on Sunday (The best medicine is to see your precious grandchildren).

Naomi and Sharon came on Sunday. Gerry brought Gregg Burns with him on Sunday afternoon. I had to ask them to leave because Gregg had me in tears from laughing and I could not stop laughing. Now I just had surgery on Wednesday and I sure did not want those staples tearing out of my stomach. Norma Jean and Denise (Terry’s sister and niece from Somerset) came Tuesday and again on Thursday. Carol Greiner (Terry Jr.’s mother-in-law) brought Tyler and Ryan to see me on Wednesday.

On the third day, the nurse came in and she wanted me to walk. I tried – with my husband by my side I made it outside of my room and just about collapsed – well the nurse said that is good, just keep trying. Later in the evening, we tried again and by the next day, they sent a therapist to me with a push walker. Then the nurse told me I would get well quicker if I walk, walk, and walk!

On my sixth day, I am trotting down the hall up the hall around the hall and each day there after I keep increasing my walks. I do not have any idea how we managed all the tubes etc. and my cups of ice, but we walked. Every time Naomi came to visit, she would walk with me and at one point, we counted fifteen trips around the halls not the short halls the long way around the third floor of Mount Carmel East hospital.
 

GIST

Then comes the dreaded news I never thought I would hear. My husband said the surgeon said it is cancer but he got it all. We are going to do a biopsy. Well you are just thinking how thankful I am they got it all and I‘m on my road to recovery. Five days later the oncologist comes back in my room with the most devastating news of my life. He sat down by my side (I am all alone lying in the hospital bed) and he said we have the results of the biopsy you still have cancer and not just cancer it is a very rare cancer called Gastro Intestinal Stromal Tumor and it was in one of six lymph nodes that were removed.

The oncologist went on to say; there is no cure for this cancer, and this type of cancer does not respond to Chemotherapy or Radiation treatment. However, there is a new drug out that is very expensive – $3,000.00 a month called Gleevec and IF you can get in a study; you should do so as soon as possible. The only thing comes to my mind as he tells me this: “I shall not die, but live and declare the works of the Lord.” Psalm 118:17. I will beat this thing and then immediately the thought – well, everyone thinks they will beat cancer. My mind is so cloudy. He asked to have a consultation with my family so on Wednesday he met with Terry my husband and Naomi my dear friend and on Thursday Terry Jr. and Gerry.
 

The Fight is On

It is hard to explain how one feels when told they have cancer. First thought is I am too young to die. All kinds of emotions rise up on the inside. I felt my whole world was coming apart. However, I made a quick decision that day – I was not going to lay in that bed and waste away – I am going to fight back with every ounce of strength in me and get well. I am going to give it my best shot! I have too much living to do to just lay here and have a pity party. Therefore, I never talked to the nurses or anyone about cancer until weeks after I came home. I must admit I did come to tears when my grandchildren walked in my room right after the doctor walked out. Just to see those sweet innocent faces so small and young – I want to see them grow up. Therefore, I immediately regained my composure.

The day before I went home the surgeon came in and said how would you like to get rid of the stomach tube and about that time he pulls the tube out of my nose so fast I didn’t have time to think about it and I wondered how that ever went down into my stomach. Now I can eat! Then the Nurse came in and the drain tube in the lower part of my stomach came out then a little latter the catheter was removed and the last thing to be removed was the central IV line which I hated. Now I start to feel like my old self. I can walk without all the tubes hooked up.

I am released from the hospital on March 14. My first night home is a nightmare. NO sleep – I had trouble breathing – coughed all night – just plain misery. So I called my MD and she is not on call (it is Saturday) so her assistant said he would call ahead and for me to go to the emergency room at Mount Carmel East. They are expecting me – we are there for six hours – they discover I am low on potassium hum I am in the hospital all that time (13 days) and now, I have to spend six hours hooked to an IV getting potassium. They also gave me three breathing treatments and a prescription for an antibiotic. By the time we leave, I am ready for a good nights sleep and finally I do have relief. Thank God.
 

Naomi to the Rescue

Recuperating seems to be slow and I am so very weak. Seems like the only thing working is my mind and it is working overtime. Of course, all kinds of bad thoughts start pouring through my mind. Fear tries to grip me especially at night. Naomi calls me every evening to make sure I am progressing well. On one of our evening chats, she asked me if I was reading the Bible. Well no, not yet I can hardly pick it up. Well she sternly informs me that NOBODY can fight this battle for me that I have to do it all on my own. She said if you want to live, you had better get with it.

WOW! I thought she and others could stand in the gap for me at least until I got on my feet. I was in shock. I believed her and I did get busy and started reading my Bible and confessing all I knew to do. I wanted to LIVE. God Bless Naomi for stirring me. She told me later – she was in shock at the thought of all the things she heard the doctor say – words I do not even remember.

She apologized for being so stern, but in hindsight, it was probably the best advice she could give me at the time. Naomi told me to write my healing scriptures on a piece of paper and say them as many times a day as I possible could. Well I had nothing but time so I began trying to memorize words of the Bible but it was very difficult. My mind was a little fuzzy from all the drugs I was given in the hospital. However, that finally subsided.

My surgeon left the staples in for two weeks. Therefore, two weeks later we are in the surgeon’s office he is removing the staples and my husband starts asking questions about the rare tumor and at this time, I do not want to hear anything about cancer especially negative comments. I just want to get well and live. However, the doctor answers all his questions and yes this was a very aggressive type cancer. This is very upsetting to me and I ask him to stop asking questions.

I love springtime – a time to experience life and to observe life coming back and I would look out my kitchen windows and see life before my eyes. The grass looked greener then it ever looked before, the trees were leafing out, the flowers were peeking through the earth and life was taking on a far more important meaning. Enjoy what you have and be thankful for the dawning of a new day.

I have been home for seven days and my son and daughter-in-law (Larry and Julie) live in Albuquerque, New Mexico came home for a week. It was so good to have them home. So my friend Naomi brings Saturday afternoon dinner for everyone what a pleasant treat. God Bless her for that dinner, we all were so hungry. No one knows how much it means to have a home cooked meal brought to you when you cannot even lift a skillet. I hope I can do something just as special for you someday my friend.

Thanks again Naomi for all the unselfish acts of kindness you showed to my family and me. My husband refuses to cook anything except breakfast, so my son Gerry came the first week I was home and cooked lunch and dinner for me. That was very special. I guess I will never be able to re-pay my family and friends for all their acts of kindness. God Bless YOU all. While Larry and Julie were here, Julie told me about a judge, she worked with, and that his wife had GIST also and she was on a support group “The Life Raft” which is on the Internet. It took me six months to finally look it up and to join the group. It was while e-mailing others with GIST that I heard of the GSI group and joined it. More about this later.

Now I am home working on the healing process. I am a big believer in the Bible and before entering the hospital I had been reading all the healing scriptures and listening to healing tapes, with many encouraging words from my friend Naomi. I e-mailed asking for prayer from Kenneth Copeland, Novel Hayes, and Joyce Meyer. Joyce Meyer Ministry sent me 10 type- written pages front and back – healing scriptures. I made my own confessions and repeat them every day 2 or 3 times daily. I know no matter what or how Jesus is my Healer! With doctors or medicine, it is still the Almighty hand of God. I prayed for a miracle and I believe God answered my prayer. I am a miracle!
 

Ginny and Kelli to the Rescue

I have a very dear friend of 36 years living in West Virginia (Ginny Hamby) and she called every day. On one call, she asked if she could do anything for me. I was in tears as I told her I am mentally confused, thinking I can’t think straight and most of all I could not say cancer or even talk about it, so I told her I would like to call “The James Cancer Clinic” to get information about Gleevec. Bless her heart she said she would make the call for me. I was so upset I could not make that phone call nor could I even find the phone number. Just minutes later she called me back with all the details.

She will never know how much that meant to me because in one of my greatest moments of helplessness she was there to pick me up when no one else was around. When I needed a friend God sent me an angel – Thanks Ginny – I love you friend and I hope I can be as good a friend to you as you have been to me. I am so thankful to have Ginny in my life to help me through life’s challenges. She is always there for me – lending a helping hand or a shoulder to cry on – she knows the good, the bad and the ugly and she is still my friend.

March 24, it is a beautiful, sunny Sunday and about lunchtime, here came Ginny and Kelli with enough food for an army. Both of them had prepared home cooked dinners for a week. What delicious food! And dessert too. Now is that a friend? They ate lunch with us that day and cleaned my kitchen. We visited and they had to leave. I hated to see them go home. They certainly made my day!

April 4, 2003 my husband and I met with Dr Shah and the Gleevec Research nurse; Tammy Yanssen. (Say luck but I count it a blessing the Gleevec trial study was still open it was closed soon after.) Tammy is a very young nurse: specialty in Surgery Oncology. She is one of the most wonderful people I have ever met. In the beginning of this study she helped me over some tough spots. Dr Shah is a very intelligent doctor. However, she told us so much that it was all so overwhelming. She is so kind, considerate, and passionate and makes you feel comfortable talking with some one as important as she is.
 

Gleevec

All my slides (from the tumor) were sent to The Memorial Sloan Kettering in New York City to confirm I am C-kit positive for the trial drug. This is a special test to determine if you are approved for the study. I am approved for the Gleevec study and I started Gleevec April 14, 2003. This was just 10 days from my first visit with Dr. Shah, to me that was a miracle. I am sure my special nurse Tammy pushed this through as quickly as possible. I will be in this study the rest of my life.

Gleevec is considered the Magic Cancer Bullet – a book by the title and appropriately so. May 10, 2001 Gleevec won the quickest passage from the FDA ever for a cancer drug. Along with this drug came many side effects. And of course, you must read all of the side effects before signing the consent forms to get into the trial. The worst side effect being death. Now would that scare you? Well I feel this is an important step for me to take and I signed all the appropriate papers and I am on my way to be an experiment. However, to me it is an awesome feeling to know I am on the cutting edge of a discovery for the cure of this dreaded disease, cancer.

I pray and thank GOD, for the four Orange Pills I took daily. About two months went by and no side effects so I am thinking OK I am going to be an exception to the rules. Then the puffy eyes start. I am an early riser but at noon, I do not like looking as if I just climbed out of bed and that is the way I looked for the next ten months. At the same time diarrhea came to visit and then the itch returned. Therefore, I start taking Zyrtec and in a few weeks, the itch subsides. Thank God. Seems very trivial. Therefore, I am taking Gleevec for one year, CT scans and blood work every three months. I am now off Gleevec and I am having clear scans and good blood results – Thank the Almighty God! Dr Shah and my nurse Tammy are so very happy and amazed with my results. They share my excitement to live! They were amazed how well I did on Gleevec and each visit I would thank God for the great results.

This journey has not been easy but I cease to amaze myself as to being a strong person. I did not cry and boohoo, as I would imagine myself doing. I trust God much more then I ever thought I possible would. The doctor said live one day at a time and enjoy – that is all any of us can do. I love life and I want to live to be an old woman.

I have been told if you are going to have cancer be thankful it is GIST because it is getting a lot of attention and new drugs are being discovered to prolong life not cure, but PROLONG. That sounds pretty darn good. But many of us GISTers are praying for a cure and we believe we are on the cutting edge of that cure. I am proud to be part of finding the cure.

I have a new appreciation of life – I thank God everyday that I have life. I feel terrific! I will repeat what has become my favorite Bible verse: “I shall not die, but live and declare the works of the Lord.” Psalm 118:17.
 

Walk For a Cure

October 10, 2004 GSI (Gist Support International) is supporting Tania and Robert Stutman’s “Walk for the Cure” in Congers New York. I am excited. My husband and I are traveling to participate. This is an opportunity to raise funds for GIST Cancer Research and to meet face to face others that also face GIST. GSI is a wonderful group of “GISTers” – we receive lots of important information from each other, sharing our experiences, we talk with people who understand where we have been and we encourage each other. I think this will be a very rewarding and lasting experience.

With the help of friends and relatives I have collected $1,000 (does not sound like much money but for me to do something like this is a miracle) and next year I hope to double that amount. All donations to this walk in Congers, NY go directly for GIST cancer research. We all hope and pray someday soon that this devastating cancer and all cancer is eradicated. 
 

My Faith

Now a brief history of my faith. I was brought up Evangelical United Brethren, which merged with the Methodist. About 1972 we became Full Gospel – meaning we believe the Word of God is for today. We believe in healing and the laying on of hands just like the Bible describes. We are attending a Faith, Bible believing Church. “Jesus the same yesterday, today and forever.” A good motto: Matthew 19:26 “With God all things are Possible.” Today God does heal and He is no respecter of persons. What He has done for others, He will do for you. The spoken word is very important – God’s words. Our words will put us over or under! Proverbs 4:20-23: “My son, attend to my words; incline thine ear unto my sayings. Let them not depart from thine eyes; keep them in the midst of thine heart. For they are life unto those that find them, and health to all their flesh. Keep thy heart with all diligence; for out of it are the issues of life.” We must speak positive to be an over comer. We must walk by Faith not by sight. Hebrews 11:6 “But without faith it is impossible to please him.”

A special thank you to my family, Ginny, Kelli, and Naomi – my three angels on this earth – words cannot express all I feel for you! Thank you seems so inadequate. Jesus is my Healer! Never, ever give up.

Kaye Thompson, Ohio, 2005

 



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