betty-johnson
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I just finished reading a book called “Sit Down, God…I’m Angry”. It is written my R. F. Smith, Jr., a Baptist Minister, after the traffic death of his 17 yr. old son that was killed in a skiing acident. I would encourage anyone that has gone through the death of a loved one to read this book whether it was your spouse, parent or child.
He reached a couple of conclusions in his book that got my attention. One was “why does grief produce such a confusion of time”. One day it seems as if your loved one has been gone such a short while and then again, it seems forever. Smith reasoned that we actually live three days for every one day when in grief. (1) We live each day the way things were, (2) we live each day the way things are and (3) we live each day the way things could have been. He also said that after the death of someone so close to you, nothing is ever the same again but while you feel your life has been broken beyond repair — it is never broken beyond some use. He finished his book by saying that in his journey, he had learned three realities: First, to love deeply is to hurt deeply. Second, to live again is to reinvest one’s love and third, deep hurt can become a solid foundation for life lived deeply.
The cost of the book is about $13 through Amazon.com. but well worth the money.
My thoughts and prayers continue to be with everyone.
Betty JohnsonRick and Stacie –
I want to express my deepest sympathy but also the appreciation for everything that you have done involving the fight against an awful disease. This site and the love that has poured out from all of the families involved has been unbelievable.
We all have shared knowledge, comfort and yes even heartbreak. Your efforts have been overwhelming and I want you to know that you are two very special people.
Mark’s memory will live in so many hearts that would have never known him had it not been for you. You have my grattitude; my thoughts and prayers will be with you
and especially Marianne as you go through these very difficult days. It’s a journey
that none of us wanted to travel but you have made it more bearable.
God Bless
Betty JohnsonSusan – so very sorry about your loss. Just know that I share your pain with you and you have my deepest sympathy. I have learned that grief is a journey but it is a journey where your Faith in God will grow stronger everyday because you know without a doubt that you will be reunited with your husband again. That will be a joyous day and happiness will be ours forever.
God Bless
Betty JohnsonSara – how wonderful and unselfish of you to give your time to attend this symposium. There are several topics being discussed that I hope will have some light shed upon. One is RFA for treatment of CC. Although Sam was not treated at one of the larger hospitals like MD Anderson, Sloan Kettering or Mayo Clinic, he did have the ablation technique performed at UAB/Birmingham and he never developed any ascites, did not have to have any stents or really have any problems associated with the liver itself. He lived almost two years and I believe his cause of death resulted from the metastasis to the lungs. It is odd how this disease affects the body so differently – did the RFA help or not?
The other topic is “Do we really help our patients when we treat them for advancaed stage pancreatic cancer?” Sam went down so very fast after receiving a treatment of Camptosar (CPT 11) and I think that one treatment made his quality of life so very awful for the last few months that the lived. He absolutely never recovered from that treatment and caused him to decide to not receive any more chemo. Was it the chemo or the disease? I think it will be very intresting to watch the Coburn case since Joe has decided not to receive any chemo.
I know that not much research has been done toward a cure for cc but money is being expended toward treating pancreatic caner. When we find a cure for it,
we will definitely be close to a cure for cc.Again my sincere thanks for your attending this seminar and I hope that you will find some answers for all of the ones fighting this unbelievable disease. Kelly sounded like a wonderful person and I know you lost a very good friend. Please let me know if I can help in any way.
By Best
Betty JohnsonHe sounds like he was a wonderful, caring person full of kindness and compassion for others. I’m so sorry for your loss. I will be thinking about you especially on January 14th as you celebrate his life.
Betty JohnsonCelia –
I’m so sorry that you and your family are having to go through this. CC is very rare and also very hard to diagnose. We considered going to M.D. Anderson but went to UAB, Birmingham instead since it was only two hours from Demopolis. You really need to be as close to home as possible because the journey in fighting this disease can be very hard on you, your husband and your children. I think we received very good care at UAB; in fact our doctors communicated with Mayo Clinic about Sam’s case. It will be difficult so try to make it as easy as possible on yourself; make your decision as to where you want to be treated and then don’t look back as to whether you made the right choice or not. If you need any other information, please call or send me an e-mail at bejohnson@rocktenn.com. Sam’s history is under
johnsonal.blogspot.com. if you want to read it. My thoughts and prayers will be with you and please call if I can do anything for you.
Betty JohnsonJeff – Sam had 28 days of radiation to the liver when he was first diagnosed in 2004 followed by radio frequency ablation to the tumor. The radiation did cause some problems to the remaining healthy liver but the liver tumor actually remained unchanged for almost two years. We just could never get the mets to the lungs and chest wall under control. Of course, everybody’s body reacts in a different way.
If you want to read his history, it is under http://www.johnsonal.blogspot.com. Best of luck to you. You have a good track record – keep it going.
Betty JohnsonSorry but I think I deleted my answer to you by mistake. We did set up a Sam A Johnson, III Scholarship fund at the University of Alabama College of Engineering in
Sam’s memory. When the scholarship reaches $20,000 the University will send me a list of applicants and then I can choose who will get the scholarship. He would have been very proud of this since he had such an influence in so many young people’s lives. He was a mentor to so many young engineers and because of his values, these young engineers grew into becoming very fine young men. If you go to the Johnson blog under the cholangiocarcinoma.org site, you can read some of the comments made about him that the Tuscaloosa News published. I guess I am partial but he was so special. He was a unique individual in a very good way. I miss him unbelievably.
Take care and God Bless you. I pray that mine and your pain will become less and we will be able to see that glimpse of light.
BettyYou are so right; no one can understand this hurt until they have been through it.
I am so sorry about your Mom and hope that time will be a friend to both of us.
I wish I could turn the clock forward so that I could speed up the process. Sam was a very unique, special person and a special gift from God. There is a really good article that the Tuscaloosa News published about him under http://www.samjohnsonfamily.blogspot.com. He touched so many lives and will continue to do so. I know that I will look back on my 34 years with Sam and be able to smile, laugh and enjoy life again someday. I wish that for you also. I saw that Dan passed away this morning at 7:33; my heart breaks into for Chris. I wish I could do something; I can only ask God to give her His peace and I pray that for you and me also.
My prayers to all of you.
BettyI don’t know if all of you have read Chris Peterson’s blog today but Dan has been given only a few days to a month. We need to keep Chris, Dan and their entire family in our prayers. The hurt and grief that they are going through is absolutely unbearable. It has been four weeks today since I lost Sam and I cannot get through an hour without crying. It is undescribable. Please ask God to send them strength to handle the days ahead. This site has been very comforting to me over the last year. I could use your prayers also.
Betty JohnsonHello Caroline – For some reason I cannot post to our blog. As you probably do not know, Sam lost his battle on August 10th at 6:05 p.m. I wanted to put the picture of the sunset that occurred when Sam died but just cannot get anything to work. I am absolutely lost without him and just sort of walk around in a daze; there is just no way to describe how much I miss him.
Sam’s service was very touching. Two of his best friends gave the euolgy – one spoke about his integrity and how many lives he touched; the other talked about how competitive he was. The First United Methodist Church of Demopolis is a very large church; it was packed with people standing in the back and around the sides. He would have been very touched. I am going to try and post to a new blog and hopefully Rick will be able to add it after I post. It will be the Sam Johnson Family.
My prayers are still with all of you.
BettyI’m not sure if not wanting to eat anything solid comes from the liver or just from the disease itself. I certainly wish I knew because Sam’s interest in any kind of solid food started deteriorating at the beginning of this year and has progressively gotten worse. Your husband’s case sounds very similar to Sam’s except that he is so much younger. Age certainly doesn’t appear to be a factor with cc. I wish now that we had not done the chemo treatments because we certainly did not get any benefit but you always have to try anything that might work; sometimes it does. He just never recovered from the irinotecan treatment that he had on May 18th; it was so tough on him. He was working full time until he received that treatment and he worked only 1/2 day after that. We are just trying to manage the pain right now and that is very difficult. If I can provide you with any other info, please contact me; my e-mail address is bejohnson@rocktenn.com. Miracles do happen; keep praying.
Kelly – so very sorry about your grandfather. Wish I could say more but it is too painful since we have been given a very short time frame also. I keep praying that one day I will walk in from work and Sam will be his old self and completely healed.
I miss the days when he was healthy so much. My best to all of your family; you will be O.K.; God made that promise and he shares your pain with you.Omega 3 is in ProSure – a protein drink. Our oncologist insisted that Sam drink at least two cans/day. He said he was more interested in him drinking this than he was calorie intake. We asked him about the pills and he said that if you had any belching whatsoever, you would taste and smell like sardines -yuk!!!!
