Date and plan

24

Comments

  • taraHK said:

    A relief?
    I imagine it's a huge relief to have a firm plan and dates in place. And of course it is still frightening. I am glad you will be in the hands of the best experts available.

    I will be thinking of you and sending prayers your way.

    Tara

    I am sending thoughts,
    I am sending thoughts, prayers, well wishes, good luck, good spirits, positive thinking and all other things that i know will help you get through this
    You are awesome
    You can do it
    Love that you used the work cure!!!
    You go for it!!!
    xx
  • steved
    steved Member Posts: 834 Member
    maglets said:

    dearest doc steve.....
    pretty much overwhelmed here.....I believe in my heart that you have made a good decision....i am just not so sure that this board has ever seen such major surgery. I am responding quickly ....will probably cogitate....

    let me just say right off the top I salute your decision..and your bravery....
    this is of course a possible cure for you......what could be better???

    life with your kids can go on
    sending only best love and support

    mags

    Canadian surrogate
    Thanks Mags for the thoughts and message- thought I'd let you kow my Canadian mum who lives in NZ is booking her flight along with my brother to come over to bere for a first couple of weeks after surgery. Will be a multinational gathering here in Exeter.

    steve
  • steved
    steved Member Posts: 834 Member
    tanstaafl said:

    big dates, "extras"
    Steve,
    We're all rooting for you, Steve. Pretty much everyone here, conventional or otherwise, knows the curative powers of surgery.

    The surgeons may fear futility from prior dissemination on a para-aortic lymph node and then multiple wound sites but one might argue if CEA burden is under, say 20 or 50 from different papers, that an accessible, isolated PALN site might still be worth removal, along with the other major sites planned. Especially with enhanced nutrition and immune function beyond "standard".

    My wife went to surgery with her immune system revved on vit D3 and cimetidine; vitamin C and K2 replete in the mega sense, among other things. Even celecoxib (originated by the surgeons), and UFT up to 24 hr before. I was cheered when our surgeons elected to use the high dose oral cimetidine (like 800mg per 6 hr = 3200mg/d) to prevent gastric acid aspiration instead of the more common proton pump inhibitors.

    We faced down a lot of naysayers on surgery for the PALN cluster in April, 2011. Without removal of the major PALN cluster and adding the extras, I'm sure my wife would already be a casualty from dessemination. Her CEA continues to trend down when on full immunochemo, last night to 2.1. We have to move this year and she's preparing for construction even if another surgery or two may be needed.

    Often "impossible" becomes possible, one careful step at a time.

    Extras
    I will mention the cimetidine idea when I meet with anaesthtists next week. I don't think I would go for a PALN removal and suggest they do the rest of the surgery if they find spread there as in truth if I have a high chance of spread to liver/ lungs (as I would if there is spread to PALN) then I don't think this surgery would be worth the risks. I am only going for it (and being offered it ) because of the strange pattern I have of having had this cancer over a decade with no signs of spread beyond the pelvis- something genetic about is probably means it isn't a 'spreader'. If there is signs of spread all the risk-benefit ideas around the surgery change.

    steve
  • steved
    steved Member Posts: 834 Member
    tommycat said:

    Yes, one chapter of your
    Yes, one chapter of your life is closing while another is opening. This new chapter will be a fresh start, minus the pain which can become so wearisome.
    I'm rooting for you Steve!
    When you're being wheeled into surgery, take a moment to remember all the people who are pulling for you and close your eyes with that thought---and open them to a better quality of life with your family.
    Huge hugs from California~
    Tommycat

    Tommycat
    Thanks for the message- it is indeed how me and my wife are thinking about this- the end of a phase in my life and the start of something new. It helps to think of it as a new challenge on a clean slate rather than one to add on top of what I now have.

    steve
  • steved
    steved Member Posts: 834 Member

    I wish you didn't have to got through this, Steve...
    but I would do the same, given that it's the best shot to be here to watch your kids grow up. As a parent, I'd do just about anything to stick around a little longer, to be there for a few more milestones. And while this is a tremendous sacrifice, I think it may very well give you the chance to be here for many more milestones in the lives of your children, and the value of that is incalculable. You'll be in my thoughts as you face this new stage of the journey. Sending strength your way~Ann Alexandria

    Ann
    Thanks for the messge. I do think it is the kids that are driving me to do this. I do wonder what my decision would be if I was not a parent. They have been fabuous in the way they have adapted to the idea of my disability and really show me that as long as we accept the changes this will bring and don't fight them, then we can get through it. It is always humbling when a five year old can teach you a thing or two about coping with disability!

    steve
  • steved
    steved Member Posts: 834 Member

    My family and I will be thinking of you
    in the coming weeks, the days of your surgery, and everyday afterward until you come back on the site to give us a thumbs up. I understand both your fear and your hope. You are bravely choosing life and a potential long term cure. You sound determined and ready to precede with your plan. It seems that there is a reason that everything had fallen into place for you. We are all in your corner. Please tell your wife that if at any time she needs support as a caregiver to come here. We will all want to help her and we will be anxious to know how you are. Have courage Steve.

    Sincerely,

    Cynthia

    Cynthia
    I will pass on your wishes to my wife who did use to use this site years ago. I may get her to post updates but don't want to give her more tasks when just holding life together will be enough of a challenge. knowing of all your support will undoubtably help though.

    Thanks for your thoughts,
    steve
  • steved
    steved Member Posts: 834 Member

    Steve
    I might even step in a church and say a prayer for you. Whether you believe us or not you show great courage of spirit. You have nothing but my best wishes being sent your way as you go forward into this new challenge of life. We'll all be there with you in spirit!
    Winter Marie

    Phil, winter marie and all others
    Will happily accept your thoughts, prayers or what ever positive vibes come my way.

    Thanks for the messages
    steve
  • steved
    steved Member Posts: 834 Member

    Dear Steve
    I am glad that you and the doctors have been able to set a date.

    I pray that God guides these surgeons hands to provide the best possible outcome, and that His angles watch over you and provide you healing warmth afterwards.

    Always know that there are lots of us around the world who are sending our best wishes and vibes as you embark on this historic surgery.

    Hugs and love to you and your family,

    Marie who loves kitties

    Thanks for the messages
    To all above- thank yo uso much for the positive thoughts, prayers and mesages. They all mean a huge amount and will look forward to returning and posting (hopefully good) progress post op.

    steve

    As for giving up alcohol and sugar- surely I'm allowed a glass of red wine and bit of dark chocolate if I make it through giving up a leg- think of all those antioxidants! All respect, but I'm afraid it will take a bit more than a measly cancer to get me to give those away.
  • lauragb
    lauragb Member Posts: 370 Member
    Light, love, prayers, vibes
    Light, love, prayers, vibes and all to you and your family as you work for your cure. You are so brave to take such a path, and focused and pragmatic. This fall is for your healing.

    Laura
  • Vickilg
    Vickilg Member Posts: 281 Member
    lauragb said:

    Light, love, prayers, vibes
    Light, love, prayers, vibes and all to you and your family as you work for your cure. You are so brave to take such a path, and focused and pragmatic. This fall is for your healing.

    Laura

    Steve!
    What an amazing person you are! Last night I prayed for you, your family and your surgeons! I believe in the power of prayer! Your amazing attitude is going to pull you through this and by all means say the word cured! Say it over and over and over again. It is the hope and believe in a cure that pulls people through. Be positive and fight the good fight. You got this, Steve!

    Big hug!

    Vicki
  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    Vickilg said:

    Steve!
    What an amazing person you are! Last night I prayed for you, your family and your surgeons! I believe in the power of prayer! Your amazing attitude is going to pull you through this and by all means say the word cured! Say it over and over and over again. It is the hope and believe in a cure that pulls people through. Be positive and fight the good fight. You got this, Steve!

    Big hug!

    Vicki

    Steve

    Good gracious....you who are so incredible, so articulate, so compassionate...will now be a pioneer in cancer treatment!! Your courage, fortitude, and strength are amazing and an inspiration. No doubt these will be hard months ahead for your wife and children as well. Know that all of you will be in my heart and prayer. It sure sounds like you have done your homework. The love of your family that compels this decision will help you every inch of the way. I am filled with hope that a new and bright future awaits you.

    Hugs and prayers,
    Cathleen Mary
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Joining the Chorus
    Worried and concerned for you - but hopeful for a terrific outcome:)

    The very best of luck!

    -Craig
  • Coppercent
    Coppercent Member Posts: 158
    Steve
    Steve you are strong and you will do well. I have always admired your strenght and knowledge on this board.

    Keep the red wine and chocolate. You deserve it and everything in moderation is just fine, heck over do it a few times too. Maybe one day we will learn that red wine and chocolate is an alternative medicine for cancer. :0)

    Sending prayers and strength to you and your family. Can't wait to get the update that you are doing well and this procedure was a great success.
  • jjaj133
    jjaj133 Member Posts: 867 Member
    Steve, I am so in awe of
    Steve, I am so in awe of your, bravery and spirit.
    I will being praying for you, your family and the doctors.
    God Bless you, judy
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    jjaj133 said:

    Steve, I am so in awe of
    Steve, I am so in awe of your, bravery and spirit.
    I will being praying for you, your family and the doctors.
    God Bless you, judy

    Steve, WOW, reading this
    Steve, WOW, reading this is overwhelming. My brain starts to spin thinking there has got to be another way!! I saw a news story about a little girl who had all her internal organs done in one transplant and she is thriving. You are so very brave, I'm in awe of you with your level head. Cure sounds great.....keeping you in my thoughts and prayers for the best outcome possible.
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    Wow Steve...it sounds like
    Wow Steve...it sounds like an aggressive but solid plan. You will of course be in my thoughts and prayers throughout your preparation for surgery, the actual surgery, and your long recovery in hospital. You are so strong...you will get through this. Andi don't mind the word cure...it is something that we all hope for someday.

    Alex
  • janie1
    janie1 Member Posts: 753 Member
    Maxiecat said:

    Wow Steve...it sounds like
    Wow Steve...it sounds like an aggressive but solid plan. You will of course be in my thoughts and prayers throughout your preparation for surgery, the actual surgery, and your long recovery in hospital. You are so strong...you will get through this. Andi don't mind the word cure...it is something that we all hope for someday.

    Alex

    A new beginning and a chance
    A new beginning and a chance for a cure has me tearing up fast. I think you get to a point of no-turning back and then the motivation for doing this kicks into overdrive. Thoughts of your family move you forward. Praying for excellent results. Will be lighting a candle for you, too. Will be looking forward to updates when possible. Hugs to your entire family.
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    janie1 said:

    A new beginning and a chance
    A new beginning and a chance for a cure has me tearing up fast. I think you get to a point of no-turning back and then the motivation for doing this kicks into overdrive. Thoughts of your family move you forward. Praying for excellent results. Will be lighting a candle for you, too. Will be looking forward to updates when possible. Hugs to your entire family.

    Hi my friend! Wish you the best in your surgery,
    U can be sure that you already are in my prayers, I'm sure it's gonna be a big success and next summer u will be able to have ur prothesis and will be enjoying the mediterranean again but rather than Minorca it will be an honour to have you here, you are invited to My home! .
    Sending you my best vibes .
    Keep us informed my friend.
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    Steve,
    It's truly difficult


    Steve,

    It's truly difficult to put into words how I felt after reading your post. I am simply in awe of the courage and tenacity that you, and so many others, display in this fight. This is going to a long journey for you, but your determination and strength of spirit will get you through the hurdles.

    I pray that this operation will be successful so that you may enjoy many more wonderful years with your family.

    All my best,

    Cynthia
  • steved
    steved Member Posts: 834 Member
    pepebcn said:

    Hi my friend! Wish you the best in your surgery,
    U can be sure that you already are in my prayers, I'm sure it's gonna be a big success and next summer u will be able to have ur prothesis and will be enjoying the mediterranean again but rather than Minorca it will be an honour to have you here, you are invited to My home! .
    Sending you my best vibes .
    Keep us informed my friend.

    Pepe
    BE careful what you offer as it may come true- always feel a pang of jealousy when I read of you heading to the beach for your weekends!

    Thanks so much for the support- it genuinely means a lot,
    steve