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  • in reply to: WooHoo! Clean scan #77028
    32coupe
    Member

    Lainy,
    Did I read it right – you have a blind date coming up? I just had to respond. Your date will of course be smitten! Unless of course he’s a moron or in fact blind. But alas… you and I know that it will take quite a man to fill Teddy’s shoes. God bless – Donna and I send our love…

    bob

    in reply to: Sweats, Fainting, and Blurry Vision–Oh My #71338
    32coupe
    Member

    Hi Crissie,
    The sweats sounds like some kind of infection. Does he have a fever? When I had stents, much of the time I had fevers – albeit sometimes low grade (like 99.8 etc). Sometimes the infection would cause a drop in blood pressure which caused light-headedness. In fact I crashed a couple of times (fainted) and got a little banged up. My urine was always more colorful than normal. If his temperature is elevated, he may need an oral antibiotic as needed. Hope you can sort it out. God bless you and your dad…

    bob

    in reply to: Hello everyone I am Pat a very blessed cc survivor #70353
    32coupe
    Member

    Great story Pat. Some sound words of advice as well. Thanks for sharing.

    bob

    in reply to: New to this forum #69741
    32coupe
    Member

    Hi Iris,
    By all means, get a second opinion – even a third. I’m disappointed that they sound like they are telling you to give up – throw in the towel – “do nothing or do chemo”. I would find a doctor who was more interested in partenering with you and your husband to fight this awful disease. You can’t know what a good fight will yield but you know what the result of quitting is. May God bless you and lead you through this…

    bob

    in reply to: Been a while… but good news anyway! #69769
    32coupe
    Member

    Derin,
    Despite the stunted medical terminology, indeed “gotta love it”! I also love the way you are moving forward and leaving this awful disease behind. Congratulations and God Bless…

    bob

    in reply to: Survival #60283
    32coupe
    Member

    Hi Sandie,
    I have beeen readng your posts to catch up on your story. I felt a real kinship as you began to talk about the mental stress even while physically you are doing well. During the difficult recovery from my last surgery, I felt that at any time I was going to end up back in the hospital. I felt that I was not getting any better even though I would have some good days interspersed with difficult days. Both the surgeon and my GI doc ran a number of tests and found that, as the surgeon said, “on paper you look great” – I was recovering as expected yet I felt miserable. The GI doc finally suggested that I take xanax “as needed”. I can tell you that I reacted poorly to that. To begin with I am a large man – 6’3″ over 200lbs. I’ve always considered myself to be able to handle anything and furthermore, as a Christian, “I don’t need drugs – I have the Living God”. I sure didn’t need some sissy drug. The GI suggested that “perhaps” I was suffering from some sort of PTSD. “Afterall” she said, “you have been hospitalized twenty some times in the last couple of years and have just had a traumatic surgery. Just maybe, your body is reacting to the trauma”. I finally surrendered and began taking the xanax “as needed” and found that though it didn’t immediately relieve all symptoms, it allowed my mind to not fixate and exagerate everything. It also allowed me to come back to the place of expressing more gratitude than grief and through that find peace in the knowledge that God was afterall in control. I will be praying that God will indeed grant you peace as well…

    bob

    in reply to: my father #69314
    32coupe
    Member

    Mao,
    Your fathers story sounds similar to mine in terms of the type and location of the tumor as well as the surgical procedure. It was recommended that I have adjuvant treatment which included 5fu and radiation because they were unable to get clear margins. For me, I wanted whatever they felt would increase my odds regardless of the treatment side effects. It obviously is a very personal decision. Because the additional treatment improved my faith and hope of a good outcome, I found the treatment itself to be not a problem. Did the adjuvant treatment prove to be effective? One can only speculate but I have no regrets – I believe I made the right decision and I’m sure you will too. May God bless you and give you wisdom and peace concerning your fathers treatment options.

    bob

    in reply to: Clean scan today- almost 2 1/2 years #68756
    32coupe
    Member

    Kathy,
    I’m sure you appreciate what a significant milestone 28 months is – congratulations indeed! As far as the emotional toll, my primary ‘weapon’ against the emotional rollercoaster has been freely expressing gratitude. I have so much for which to be grateful, as most of us do, that it trumps the momentary valleys of fear or discouragement. I often recite to myself a scripture verse: “This is the day the Lord has made; I wil rejoice and be glad in it”. Another is: “The joy of the Lord is my strength”. For me, this isn’t some form of denial to cope. This is stating truth in the face of difficulty. Others may offer other ways…

    God Bless,

    bob

    in reply to: Update on my dad! #67906
    32coupe
    Member

    Hi Nikki,
    Just to add my ‘two cents’ to the conversation, surgery is the only path to cure for this hideous disease. The risk is significant and the recovery can be awful (personal experience). So it is a risk/reward situation. But I would recommend serious consideration of surgery – it appears to be the only hope. Praying that God will give you guidance and the doctors divine insight.

    bob

    in reply to: Survival…Please tell us your latest milestone #64605
    32coupe
    Member

    As of Dec 18, I will be marking 16 years of being cancer free. It’s not been without a few bumps – I’m still having some liver infection issues – but my life is so good most of the time that I can barely stand it. May God bless all of you with cause for hope…

    bob

    in reply to: Intrahepatic CC symptoms #59906
    32coupe
    Member

    Shlamoney,
    As far as symptoms, they vary from case to case. I had what appeared to be typical gall bladder disease symptoms but for the most part felt pefectly healthy – clearly I wasn’t. As far as the docs giving you a timeframe, I just wouldn’t accept that. God alone knows when your time is up. It’s been mentioned that you should get a second and even third opinion. I completely agree. You will read posts here describing cases similar to yours where they were able thru various protocols to shrink tumors and finally resect (which is apparently the only hope for a cure). There are also a couple of cases here where they had a liver transplant to affect a cure. Exhaust all of the possible sources – don’t give up nor give in. Listen for what God is saying to you – He wants to give you clear direction. Follow His lead.

    Grace and Peace,
    bob
    PS. I was 51 when diagnosed – I’m now 67.

    in reply to: Unusual Cholangio Guy – Survivor Against the Odds #59236
    32coupe
    Member

    Jeff,
    Welcome to the family! As you’ve readily found, this forum has room for a lot of different approaches to living your life after diagnosis. My approach is somewhat like yours. It’s not supprising I suppose that cancer (particularly one like CC) tends to bring clarity and focus. A lot of stuff that at one time seemed so darned important fades into it’s proper place. It appears that your “stuff” has done just that. Keep at it my friend…

    God Bless!

    bob

    in reply to: swimming with capped tube? #58753
    32coupe
    Member

    Hi Betsy,
    Are you really down to one tube!!!? Outstanding! On the subject of swimming, I tried, against my docs orders, to swim after covering the opening with two layers of tegraderm only to have water seep in after only 15-20 minutes. I just couldn’t sit at the edge of the pool and watch my grandsons play without “Papa”…

    Blessing to all,
    bob

    in reply to: Clean Scan (officially) #57582
    32coupe
    Member

    Randi,
    Congratulations!! It looks to me that you received a very special Valentines gift from God himself. Keep it up…

    God Bless!
    bob

    in reply to: Make sure you are sitting down. #57374
    32coupe
    Member

    Grover,
    WOW! Great news indeed! As we all know, resection is the best chance for a cure. God has truly answered your prayers. BTW, I like to correct people when they talk about the power of prayer. In my opinion, it is really the power of the Living God activated by prayer and the power of God is present with you and your family at this time.

    Prayers coming your way,
    bob

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