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Viewing 15 posts - 1 through 15 (of 28 total)
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  • in reply to: Lung mets and other issues #18832
    bjohnson
    Participant

    Michele – I have pondered most of the day as to whether to address your question about the lung mets because if there is anything I would not want to do is to not offer everyone hope to beat this unbelievable disease. Everyone’s body reacts differently but Sam went through numerous chemo regimens and none of them had any result whatsoever on the mets to the lungs and chest wall. They just continued to multiply and get larger. He did get some relief to the large tumor in the chest from radiation but not from the chemo. The last chemo he had was oxaliplatin which really was the worse for him. From our own experience, I think you have to decide when enough is enough and I know that if Sam were here and had to do this over again, he would choose not to take any chemo treatments. I think the RFA on the liver bought him some quality time but not the chemo. We had 100% cancer coverage through Blue Cross Blue Shield of Alabama so that wasn’t an issue for us. There are some people on this site that have had excellent results so I certainly do not mean to discourage you in any way; I just saw Sam suffer so much through the treatments that I don’t ever want to see that again. It is so hard; my heart just hurts for what you are going through. You and Jim are in my thoughts and prayers.
    God Bless
    Betty Johnson

    in reply to: Feet Pain #18494
    bjohnson
    Participant

    Hi Steve,
    I think I remember that when taking oxaliplatin, your body is extremely sensitive to anything cold. Lana should wear gloves when when she removes something from the refrigerator and really bundle up if she has to go outside. I don’t remember Sam having any swelling – just the pins and needles but I think everybody’s body reacts in dfiferent ways. Hope this helps and my best to you and your wife.
    Betty Johnson

    in reply to: Caroline Stoufer #18300
    bjohnson
    Participant

    Seeing Kelly Lester’s picture on “faces of cholangiocarcinoma” made me want to go back and read some of her blog (lesterlink.blogspot.com). I came across a posting from Caroline Stouffer. She said “Joel, thank you for your tribute to Kelly. I have the same wishes when I am gone – that everyone live their life to the fullest and not waste any time being unhappy”.
    Doesn’t that sound just like her?? She certainly did that. My thoughts and prayers go out to her family.
    Betty Johnson

    in reply to: Happy Birthday Mark! #18216
    bjohnson
    Participant

    Absolutely a wonderful job! Ditto to all of the above replies and Happy Birthday Mark.
    Betty Johnson

    in reply to: Tis the Season to be Jolly or Not ? #17838
    bjohnson
    Participant

    Jeff – this is so special; thanks for sharing with all of us. I know it comes straight from the heart and I do hope your holidays will be jolly. When Sam was diagnosed with cc, I asked him why? His reply –
    “Betty, life is what it is. I have lived a good life”. He was an unbelievably strong person and I think you are too. Holidays are tough for me but “this too shall pass”. Enjoy lots of gravy!!!
    My Best
    Betty

    in reply to: Charlie’s surgery moved up to tomorrow (Tues. 11/6) #17683
    bjohnson
    Participant

    Carol – I still can relive all of the very anxious moments when Sam had his liver surgery – every detail and that will be three years ago this January, 2008. My heart goes out to you as you sit in the waiting room waiting to hear from the doctor, in the recovery room when you first see his face and the next few days while Charlie is recovering. My prayers are being sent your way for a very, very successful resection and a speedy recovery for Charlie. Take care of yourself also.
    Betty Johnson

    in reply to: My Father, and My Best Friend #17511
    bjohnson
    Participant

    Dear Jliu 168 –
    So very sorry about your Dad. He sounded like such a wonderful person; your description of him in the last paragraph was beautiful. You will miss him but were so blessed to have had a role model like him in your life. I’m sure he was a proud Dad.
    Betty Johnson

    in reply to: Sharing Our Story #17449
    bjohnson
    Participant

    Dear KD – I wish I could say something that would make you feel better. I can only send you a big hug and prayers. I have typed this reply several times, erased it, typed it again, erased it. I will just say that all of us are here for you anytime you need to express your feelings. I still believe in miracles even though I didn’t get the one I wanted but they still happen. Don’t give up.
    Betty Johnson

    in reply to: my husband and best friend #17144
    bjohnson
    Participant

    Dear Lost in Ohio – I ditto what Jeff has said. I wish I could say something majiq that would make your hurt go away; I wish you could do the same for me. We are all here for each other; you can find most of our e-mail addresses and all of our stories on this wonderful site. Browse through the grief section and I’m sure you will find a posting there that will touch your heart and be of some comfort. So very sorry for your loss but be confident that God knows our hurt, our pain, our loneliness and He weeps when we weep. We are not alone. God Bless
    Betty

    in reply to: Good News Daughter’s Thyroid non-cancerous #17396
    bjohnson
    Participant

    Jeff – looks like the bargaining was a success; certainly can’t argue with that.
    I also bet there was a lot of prayer from the ones on this site being sent up for you and your daugher also. So happy to hear the good news. Hang in there!!
    Betty

    in reply to: angry stage #17285
    bjohnson
    Participant

    A Crisp View of God
    There is a window in your heart through which you can see God. Once upon a time that window was clear. Your vew of God was crisp. You could see God as vividly as you could see a gentle valley or hillside.
    Then, suddenly, the window cracked. A pebble broke the window. A pebble of pain.
    And suddenly God was not so easy to see. The view that had been so crisp had changed.
    You were puzzled. God wouldn’t allow something like this to happen, would he?
    When you can’t see him, trust him . . . Jesus is closer than you’ve ever dreamed.

    in reply to: Patty is in the Hospital #16962
    bjohnson
    Participant

    Ted & Patty –
    Your postings clearly state your love for each other and for the Lord; you are so blessed in so many ways despite the hurt and pain that you are going through now.
    May you continue to have peace; my thoughts and prayers are with you.
    Love Betty

    in reply to: angry stage #17283
    bjohnson
    Participant

    New Five-Stage Theory for Grieving
    A friend of mine in Thomaston, GA did some research on grief. She passed her findings along to me and I wanted to share them with all of you that have lost someone. I don’t think any of us faces a harder challenge than losing a loved one or comforting a friend or relative after the death of someone close. Most of us have heard about the “Kubler-Ross” five-stage theory of grief for people who are dying, which many people believe also holds true for grieving over the loss of a loved one. The theory describes five distinct emotional stages to grief that terminally ill patients go through – denial . . . anger . . bargaining . . . depression . . . and acceptance.
    Surprisingly, little research has been done to affirm the validity of this theory, which was popularized by Swiss psychiatrist Elisabeth Kubler-Ross, MD, when applied to bereavement. My friend called to ask about the new study, published in the Journal of the American Medical Association, Holly G. Prigerson, PhD, senior author of the article, said “It struck us as odd that a theory with such wide acceptance had never been actually tested.” Hence, Dr. Prigerson and her team set out to take a closer look at how people process grief and loss and to determine whether the five-stage model is accurate.

    A FRESH LOOK
    The researchers followed 233 people who had lost a loved one — a spouse, parent, sibling or child, with the majority (84%) bereaved spouses. All deaths were from natural causes, mostly following a long illness. During the two-year study period, participants kept track of how often they experienced each of the five grief indicators –denial/disbelief … yearning … anger … depression … and acceptance. Theorizing that separation anxiety plays a major role in mourning the loss of others, the researchers removed “bargaining” (they believed that “bargaining”, was more relevant when processing your own forthcoming death) and used “yearning” as the core indicator of separation anxiety. The results found some important differences from the five-stage theory.

    Grieving, they learned, isn’t exactly a linear process of working one’s way toward acceptance. Instead the various emotions overlap considerably during mourning, with some predominating at different times. Interestingly, disbelief did not top the list as the initial dominant response although it scored at its highest level during the first month post-loss. Rather, acceptance (the last phase in the five-stage theory) was what people reported most often feeling during each period of the study.

    It turns our that the new stage — “yearning” — was actually the most frequently reported negative emotion, peaking at four months post-loss. Anger peaked at five months and depression at six months after the death.

    IT’S ALL NORMAL
    While interesting to have this new perspective on the science of bereavemewnt, what’s most important is how the study results might be helpful in coping with loss, or being supportive to friends and family who’ve suffered one. What’s most meaningful is how this research can help normalize how people experience grief, by rendering acceptable the wide range of emotions that surface in the ensuing months.

    Anger is likely the most difficult emotion to cope with. Most people have a hard time accepting or expressing their anger at the departed loved one. They feel tremendous guilt about being angry — but as this research shows, anger does come up. It’s reassuring to know this so that unnecessary and damaging guilt can be avoided. Bereavement shouldn’t be considered something to “get over” but instead a fact to be eventually integrated into the survivor’s life. Everyone is different after the experience of profound grief.

    IS HELP NECESSARY
    The fact that the intense emotions (yearning, anger and depression) all peaked within six months of loss in this study led researchers in their conclusion to suggest that those for whom those feelings continue after six months may need to seek help or might benefit fromn evaluation. Dr. Dennis McCann, PhD, director of pastoral care at Middlesex Hospital in Middletown, Connecticue disagreed saying there’s nothing significant about the six-month mark. A better determination of whether a person needs help at any time during the bereavement process is how well they are getting on with the activities of daily life. If the pain is so great that one cannot function, then help is certainly needed no matter the time frame after the loss. This might take the form of individual counseling or joining a bereavement support group — or for some people, medication for depression or anxiety to allow them to handle their responsibilities and navigate their daily lives after a profound loss.

    Is there any way to prepare in advance for such a loss? Dr. McCann said that meditation and mindfulness can be helpful as practices to lead toward realization and acceptance of an uncomfortable reality — which is that all things and people in this world are impermanent. While not all losses allow time for preparation, coming to terms in advance with both the inevitability and capriciousness of the cycle of life may go far in helping you and your friends/family cope with a painful loss when it strikes.

    My Comments
    I hope that some of the findings above will help those on this site. I found that the few weeks following Sam’s one-year anniversary have been unbelievably hard so there is just no majic time frame. Martin Luther, one of the most fascinating figures in Christian history, said “There is no sweeter union than that in a good marriage. Nor is there any death more bitter than that which separates a married couple. Only the deaths of children come close to this; how much this hurts I have myself experienced.”
    Whether you lose a spouse, a child, a parent, a sibling, the hurt and pain can only be felt by those that experience this loss. I have quoted C.S. Lewis on this site before but I love what he said “their absence is like the sky . . . spread over everything.”
    Love to all of you
    Betty

    in reply to: my husband and best friend #17121
    bjohnson
    Participant

    Lynda – so sad to hear about your husband; although no two cases are exactly alike, his symptoms sound so similar to Sam’s. Sam took radiation several times to the chest and shoulder area in addition to various pain medications.
    If you need to ask me any specific questions, please feel free to send me an e-mail.
    I’ll be glad to offer whatever advice I can – bejohnson@rocktenn.com. My thoughts and prayers are with you.
    Betty Johnson

    in reply to: I never wanted to post here #16985
    bjohnson
    Participant

    Jules –
    My heart goes out to you. We don’t like to say good-bye to those whom we love.
    They had pain here. They have no pain there. They struggled here. THey have no struggles there. You and I might wonder why God took them home. But they don’t.
    They understand. They are, at this very moment, at peace in the presence of God.
    We are the ones that continue to struggle because we miss them so much but we will
    see them again and just think of the joy. May God give you strength and peace.
    Love Betty

Viewing 15 posts - 1 through 15 (of 28 total)