Discussion Board Forums Introductions! My Husband and Cholangiocarcinoma

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  • #34468
    lainy
    Participant

    Dear Jim, Welcome to our wonderful Family. When you have some time you should really attempt a Novel as your way of writing is just wonderful! At least you and your lovely wife experienced something that most people never are lucky enough to encounter and that is a true, deep love. My husband Teddy and I handle things much as the 2 of you did. It is what it is, now lets get on with life. We hope you will hang around with us for a long time and look forward to hearing from you again soon.

    #34467
    marions
    Moderator

    Dear Jim….welcome and thank you for sharing this heartfelt story. Your wisdom, strengths and kindness have touched me in a special way. Please, continue to stay with us. You have a wonderful way of reaching out and you truly are an inspiration.
    My absolute best wishes are coming your way,
    Marion

    #34466
    jim
    Member

    I am a “first timer” who has just registered today for this wonderful website. I have taken a quick look at the recent posts – especially those from Margaret and Darla, and the others of you who have given Margaret such heartfelt expressions of support and encouragement. Margaret, I sincerely feel your pain and your anxiety, as does everyone who has commented, and I wish nothing but the very best for you and your husband. I second Darla’s caution to you to understand that everyone’s experience is different, and not to draw any comparisons or conclusions about survival times, doctors, procedures, hospitals, etc.

    I am a 65 year old professional, live and work in eastern North Carolina, and was married to the only woman I ever loved in 1966. We have four daughters and five grandchildren. I still remember that Saturday in the movies. We were both 14 years old, 7 days apart in age, and grew up and went to school together in the same small town. It had been reported to me by a mutual school friend that she might consider allowing me to hold her hand, if I was brave enough. Up to that point, we had just been flirting – but nothing physical. There we sat in the theater together watching the first movie of a “double feature”, on through the previews of coming attractions, the news reels (it was 1958), and the cartoons. Towards the end of the second feature, I still hadn’t made my move. Then with about 2 minutes to go, with shaking palms awash in sweat, I managed just enough courage to reach out and make the connnection. As I write this, I still hold that vivid memory dear in my heart, and remember the episode like it happened yesterday – truly one of the luckiest days of my life.

    She was diagnosed with CC in late February 2006 – a 9 cm tumor, thought to be inoperable by the initial doctors due to its size, stood out in stark, ugly darkened contrast on the scan. She had become jaundiced just prior to a scheduled gall bladder surgery. She was otherwise healty, had no prior symptoms until then, and was neither a user of alcohol, drugs, or tobacco, and never had hepatitis – all known risk factors for CC. This is what is so insidious about this rare cancer – it gives you little if any advance warning. We were told by the first doctors to “go home and watch a few more sunsets”. We rejected that advice and went immediately to Duke University Medical Center in Durham. She came under the care of an agressive surgeon who said he would operate, eventhough the tumor was large, because there was no evidence of metastases at that point, and the tumor was primary to the liver. He said the objective of the surgery was to “reset the clock” – and we had an inherent understanding of what he meant. In addition to liver resection (70%) surgery at Duke 30 days post diagnosis, she subsequently underwent 3 months radiation at Duke; then off and on chemotherapy at our local treatment center (cisplatin, gemcitobene, and others) in 9 week intervals, followed by periodic pet and cat scans, MRI’s, evaluations, and such; frequent neupogen injections prior to treatment day; targeted radiation delivered intravenously up through the femoral artery to the tumor site using therasphere encapsulated radioactive “yitrium-90″micro glass beads; microwave ablation; etc etc on and on. Except for emergency surgery at Florida Celebration Hospital during a trip to Disneyworld last February to relieve swelling, all other post surgical treatment was done at the UNC Lineberger Comprehensive Cancer Center at Chapel Hill, NC – a place where true miracles are now occurring. Her Duke surgeon (who we obviously hold dear in our hearts) was Carlos Marroquin, now attached to a hospital in Rochester, NY. Her UNC Lineberger doctor was Bert O’Neil who we likewise hold in high esteem.

    We lost her November 7, 2009 after a long and valiant fight – almost four years after initial diagnosis and major liver resection.

    We never asked the tough questions, never asked any doctor how much time she had left (although we had a fairly good idea), and never even knew what stage her cancer was – those things were simply felt to be out of our control. We always talked about what we were going to do “when you get well”.

    People ask me how we got through all that. My answer is that she and I had a firm belief in God, trusted in his mercy through faith, and had claimed our eternal salvation by accepting Christ as the son of God and our personal savior. Its just that simple.

    Now for the happy part! The last four years were the best years of our lives. How can this be? Here’s the answer: when a man and a woman are as deeply in love with each other as we were – sharing the same foundation of faith and spiritual belief – are then confronted with their own mortality, they start living and communicating and treating each other like they should have been doing all along. That makes for an absolutely wonderful relationship, one that can overcome any obstacle or adversity. The fact of the matter is that our stars crossed from the moment our hands first touched at that theater in 1958 and stayed crossed, faithfully and loyally, for over 51 years, 43 years of which were as man and wife. During all that time, we shared more joy than anyone could expect out of life – and yes some sadness as well. Sadness is fleeting and cured by time, but happiness vividly lives on. Really, now, what man or woman is entitled to expect more than that out of the uncertainties and vagaries of a life we all must inevitably deal with?

    I want to post a subsequent message later to tell you all about some specific research in CC which is just getting underway at the UNC Lineberger Comprehensive Cancer Center at Chapel Hill. I promise not to be as “wordy” as I was today. This was my very first post to the site. Perhaps everyone’s first time is the lengthiest. Thank you all for putting up with it – it has helped me deal with the loss.

    I wish you all the best life has to offer and that each of you will find ways to deal with your adversity. I found my way, and so can you.

    #34465
    marions
    Moderator

    Dear Cindy….I am so sorry to hear about your Dad. I do however, believe that it is time for you to become an advocate for your Dad. There are a few things you need to tend to. Is it possible for your parents to draw up a durable power of attorney and a medical power of attorney? This will allow you to speak with the physicians on behalf of your Dad. You may also receive copies of the medical records including, lab test, CT scan, MRI’s, etc. These you might want to forward to another center specializing in the disease of Cholangiocarcinoma. You would also want to have a conference with the attending physicians. You would want to ask all the questions you have put out on this board and more. It helped me to carry along a notebook because; the information coming your way may be confusing and overwhelming.
    I am thinking of you and sending all my best wishes your way,
    Marion

    #34464
    gavin
    Moderator

    Hi Cindy,

    Welcome to the site, although I am sorry that you have to be here. Your story sounds similar to mine in many ways. Like you and your parents, for me, it was just me and my parents and I was the carer to them both. I have no brothers or sisters and am not married so I had to deal with all of this on my own. Dad was diagnosed in 2008 with inoperable CC and mum already had COPD. When my dad was diagnosed, I felt the same feelings of shock that you feel now, I guess that this is normal.

    Like you have done and are doing, I did as much research as I could, and in doing this, I found this place. Like your family is, my family is also small so I can relate to your feelings of lonliness at the moment. I didn’t have anyone really to turn to to talk about what was going on with my dad or how I was feeling during all of this. This site and the people here have given me so much support and help and I know that everyone will do the same for you. So please, keep coming back as you will get a ton of support and you are not alone in going through this anymore.

    I would not be happy at the lack of information that you are getting from your dads doctors as to his condition, especially as you say that they are not answering your questions. Have you looked into getting some other doctors opinions as to what can be possibly done for your dad?

    You are not alone anymore, and I wish you, your mum and your dad my best wishes.

    Gavin

    #34463
    lainy
    Participant

    Dear Cindy, Welcome to our wonderful Family. We are so sorry you are going through this nightmare. My big suggestion would be to gather all his test results and get a second opinion very quickly. Do you mind telling us where you are and perhaps some of our family in your area can be of help as to who you might see. Also wondering if these doctors have treated much in the way of CC. You are not alone anymore you have over 1,000 family members now. We believe heavily on second and third opinions. One more thing, we do not believe in statistics. We have some family members who were given months and after years are still with us! Glad you are reading up on this as to be informed will make you a stronger advocate for your dad. Once there is a game plan that you all feel is right (I use my gut feelings a lot to think things out) all of you will feel much better.

    #34462
    cindym
    Participant

    My father was diagnosed with bile duct cancer at the end of September 2010. Like everyone else we were shocked and devastated. There is just myself and my parents. My father is 70 and my mother turned 65 two weeks after his diagnosis. Since our diagnosis we

    #34461
    gavin
    Moderator

    Hi Margaret,

    I know how hard all of this is to deal with, and yes you are right in that this is all so unfair. I think feelings of anger must be quite common when having to deal with all of this, I certainly felt that way also. But know that you are not alone here and we are all here for you and Tom.

    I hope that everything goes well for Tom on Friday and that they can get the stent placed.

    Loads of good wishes coming you and Tom’s way,

    Gavin

    #34460
    cherbourg
    Participant

    Margaret,

    I wish I could give you a hug….instead I’ll send a cyber-hug. I have nothing to offer you except I truly know how hard this is.

    Watching what this disease can do makes you question everything. You and Tom are in my thoughts and prayers. Hang in there and know you can ALWAYS come here to vent.

    Keeping my fingers crossed for good news on Friday.

    Hugs and much love coming your way,

    Pam

    #34459
    darla
    Participant

    Margaret,

    Yes, it is all so very hard. Many of us have felt as you do. It is hard not to.
    Hang in there Margaret. We are all here to give you strength & support. My thoughts & prayers are with you & Tom

    Love & Hugs,
    Darla

    #34458
    magic
    Participant

    Margaret,it is all so hard!!!I was angry too,just in general at nobody in particular.We just struggle on and try to support each other.
    The weight loss is hard to see because it makes our loved ones look so sick and combined with a colour that is not quite right! and the weariness that comes with illness,this is all really,really hard
    Janet x

    #34457
    lainy
    Participant

    Dear Margaret, Teddy will light a candle for Tom at Mass tomorrow morning. I cannot put myself in your shoes as we are not there yet, but know that I am sending you waves of strength and courage, thoughts and prayers.

    #34456
    mlepp0416
    Participant

    Two more days and they will try to place the internal stent. Prayers requsted that they are successful. Tom continues to loose weight, down to 122 lbs. I’m not ready to face that he may need hospice within the next few weeks. I’m not ready to let go. I’m just not ready for any of this, but are any of us?

    I feel the need to get angry at somebody or something, but feel it will do no good. We all ask “Why” but don’t get any answers. Somehow it all seems so unfair. I realize that we have to all go to a better place sometime, and find myself hoping that he does not suffer too long with this dreadful cancer.

    Sorry I feel like I’m being negative, but also trying to be realistic. How much longer can my wonderful loving vibrant fun loving husband continue to fight this battle when it is ravaging his body?

    Please send some prayers his way.

    Go with God and you guys KEEP KICKIN’ THAT cancer.

    Will post more on Friday after his procedure.

    Margaret

    #34455
    mlepp0416
    Participant

    Thanks Gavin, Lainy and Kris! I will have to check out the BRATTY thing, sounds like a good plan! He does take lactobacillis which equals about 10 containers of yogurt to keep the good bacteria going in his digestive tract.

    I’m excited because he’s gone a whole week and didn’t loose any more weight and he’s eating much better now!

    God Bless!

    KEEP KICKIN’ THAT cancer.
    Margaret

    #34454
    devoncat
    Participant

    Margaret,
    I am smiling ear to ear thinking about Tom getting an internal drain. It really does make life easier…plus you dont feel like some household appliance with a cord as you do with the external drain.

    Xeloda knocked me down digestively too. Keep an eye on Toms fluids. I ended up in the hospital several times for dehydration before we got smart and decided to get me into the dr. office for some iv fluids on a regular bases. I was also told to eat blueberries and drink its juice as well as follow the BRATTY thing that parents are told for babies and children with diarreah (sp). If I remember correctly that was (b)ananas, (r)ice cereal, (a)pplesauce, (t)ea, (t)oast, and (y)ogurt. But please double check me on this.

    Kris

Viewing 15 posts - 181 through 195 (of 285 total)
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