From NED to terminal in one evening

steved
steved Member Posts: 834

Have had some ongoing symptoms of back pain that weren't settling in their usually way so went back in last Thursday for an mri to have a look and my cancer has returned with a vengeance. There is a mass in front of the sacrum invading into theneural tube where the spinal cord passes and pressing onnerves there. Also another mass inthe lumbar vertebrae which is the first sign of the cancer spreading by blood vessels. Hadimmediate opinions to see if they could decompress some of the spinal areas but feel it is too entangled and won't do much. Ended up self discharging and going on a weeks holiday with the familya nd lots of pain killto get get some space and make some decisions.

I am functionally much mdisabled led very quickly with more pain and weakness in my remaining left leg (right leg amputated last sept to control previous recurrence for those rather don't know). Saw more surgeons and oncology yesterday and there is offer of chemo- prob cetuximab and irinotecan- notdone either with stats that could delay or slow progresses in 45% and shrink it in 15% with issues of side effects. Initial reactiis was no but havIng week away with kids and family have decided to give it another fortnight to optimise all I can do to control pain and get functioning again and then decide is it worth it. If I got signficant side effects now on top of all else I woul dprobably give up quite quickly.

Prognosis impossible- probably months to a year so going to medically retire and focus on finding those moments of pleasure and joy we all treasure ESP with family. Had a lovely wine soaked (on top of diazepam and morphine) lunch in the sun yesterday after hospital appointments with the wife which we loved and then I rested and watched the French open tennis with the kids. Life isn't over- and I still plan to live every moment but feel taking control this time may be about knowing a lot more of what is important (coming up ten years on this battle)  rather than accepting treadmill treatment at whatever cost. Head spins from quite together to whirlwinds that I am sure we all recognise but the kids don't let  you stay that way for long.

Feel sad as much as all else-  a month ago I was up ontoprosthesis, working full time, pushing forward with aims and goals and all that has shifted. But shifting isn't the same as giving up- just an adaptation. Strangely I also still don't think I regret choosing the radical amputation- at the time it was right, gave mesome good time and I'm pretty sure things wouldn't be much better even with that leg attached. Regrets really have no place here.

Steve

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Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    sorry
    Steve..I am so sorry and don't know what to say. I feel sick to my stomach reading your post. You have fought so hard and are such an inspiration. Its not fair and Im sorry that you and your family got this news. I keep you in my thoughts prayers and heart.
  • tanstaafl
    tanstaafl Member Posts: 1,299 Member
    soft additions

    Hope you can consider adding some of the off label adjunct uses we've talked about here.  Celecoxib,  PSK, WGP, EGCG, vitamin D3/K2 etc...   I know from various tests that it's been a % by % battle of additive effects to push back and cause growth to slow, to become shrinkage, to keep increasing UFT-LV effect rather than lose it.  

    I suspect my wife's tumor cells get pummeled as much or more than FOLFOXIRI-A, without the side effects.  Certainly she's done better than predicted, because the Japanese biomarker data, like hers, says total extinction for 5FU-LV (w/o oxi, iri, cet, bev) at 40 months, a few weeks away while her CEA has hit its lowest ever, 1.5.

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    I was so sorry to read your
    I was so sorry to read your post. I don't know what to say. I am in awe of the fight you've put up against this disease. You've tried everything. I am so sorry it worked out this way. I hate this disease. I admire your strength and your positive attitude. Enjoy your upcoming time with your family.

    Chelsea
  • geotina
    geotina Member Posts: 2,111
    Hi Steve:

    Never have regrets.  At the time, you did everything you could plus some, and you continue to do so.  So very many times this disease has a mind of its own and despite everything we do, it continues to win.

    After I lost my George I went there, did I do this right, did I do that right, did I make the right decisions for him, should I have gone with life support, dialysis, every machine known to man to keep him around a few more days and I said no, and it took me a while to realize  that yes, I did make the right decisions and to quit second guessing myself.   Of course a beloved member of this board did tell me that I played it right, right down the line.  These were horrible decisions for any human being to make for someone they loved above all else but somehow we find the strength to do so.

    You have fought your disease with unbelievable strength and courage and will continue to do so.  We don't know what is around the corner, no one does.  I so wish you were not in the spot you are in. 

    I wish you continued strength, hope and courage.

    Hugs - Tina

  • wolfen
    wolfen Member Posts: 1,324
    geotina said:

    Hi Steve:

    Never have regrets.  At the time, you did everything you could plus some, and you continue to do so.  So very many times this disease has a mind of its own and despite everything we do, it continues to win.

    After I lost my George I went there, did I do this right, did I do that right, did I make the right decisions for him, should I have gone with life support, dialysis, every machine known to man to keep him around a few more days and I said no, and it took me a while to realize  that yes, I did make the right decisions and to quit second guessing myself.   Of course a beloved member of this board did tell me that I played it right, right down the line.  These were horrible decisions for any human being to make for someone they loved above all else but somehow we find the strength to do so.

    You have fought your disease with unbelievable strength and courage and will continue to do so.  We don't know what is around the corner, no one does.  I so wish you were not in the spot you are in. 

    I wish you continued strength, hope and courage.

    Hugs - Tina

    Steve

    I am so saddened by this latest turn of events. Your bravery & determination represent the cancer survivor to the greatest extent. Never look back as you fight on to the best of your abilities. I'm sure whatever your decision, it will be right for you and your family.

    I will be thinking of you and your family and be hoping beyond hope for better news.

    Luv,

    Wolfen

  • charliesangel
    charliesangel Member Posts: 26
    Devastated

    I am so incredibly sad Steved... Just remember my Dad was given 6-12 months after his cancer returned to his sacrum and associated nerve roots, however after 3 lots of Cyberknife he is coming up to 4 years, although he still has cancer, it is pretty well contolled and he no longer requires pain medication, which has been the biggest benefit...

     

     

    Perhaps ask your doctor if its a possibility for you?? Thinking of you x

  • Maxiecat
    Maxiecat Member Posts: 544
    Oh no Steve...I am so sad to

    Oh no Steve...I am so sad to read your post.  Keep fighting while doing what is best for your family.  We are all here to cheer you on. I think the plan to medically retire is a good one...this way you can concentrate on your health needs and your family.

    alex

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Steve

    I was so very sorry to read your news. 

    Cancer is an insidious disease. 

    I remember when you first started posting and the radical surgery you chose as your way of fighting the recurrance.

    I so wish you had gotten more time from the sacrifices you made.

    Please know that the road you have and will yet travel has not been in vain.  You have had more time with your family, you have shown them and us what true courage is, you have given the medical world more to ponder regarding the surgery and disease.  Your efforts have had far reaching impact.

    May each minute, hour, day be one in which love is exchanged with your family and friends.  You have the time to leave much more of yourself for each of them in your actions and written word.

    I hope that you can reach a point where the pain can be managed.

    Hugs and love to you and all who love you.

    Marie who loves kitties

  • LivinginNH
    LivinginNH Member Posts: 1,456
     
    Oh dang, I'm so sorry to

     

    Oh dang, I'm so sorry to hear this news.  I was hoping that you'd be in remission for a much longer period of time after that last surgery.  But I'm glad that you've decided to retire and spend a lot of good quality time with your family.

    All my best,

    Cynthia

  • janderson1964
    janderson1964 Member Posts: 2,215
    I am so devastated about your

    I am so devastated about your news. I have a knot in my stomach right now after reading your post although I feel funny saying since I am not the one who is living with that news. I just dont know what to say.

    I am truly sorry. You are still a hero of mine and always will be.

  • Semira
    Semira Member Posts: 381 Member
    out of words

    but full of emotion. So sad news but I love the way you deal with all this.

    Sending a warm hug 

    Petra

  • YoVita
    YoVita Member Posts: 590
    So sorry about your news

    I'm glad you have no regrets about recent medical decisions.  I'm glad you've chosen to spend more time with family.  I hope your new plan helps with your pain.  You've always struck me as a very grounded person.  My best to you Steve.  

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    I'm Sorry to Read This, Steve...

    Your story always stays with me....I believe it always will...

    We're all sad here - as one's setbacks are a mirrored reflection of the community at large and what me may or may not face as we soldier on.  I know (like everyone) that I really thought that things would be okay, by the way you were describing your life.

    I knew what you had done was serious stuff all the way around and that risk of recurrence was certainly a possibility, even with the interventions that were carried out on your behalf by your crack surgical team you assembled.

    It seems like only yesterday when you were facing surgery - and then you were off to play football and return to your practice - and now this sudden turn of events.

    Regrets?

    I think they have a place here - if not here, then where else?

    But, I agree that regrets is not the optimal way to think....we don't have the luxury of mapping things out over time; many times we have to make pretty quick decisions - and those decisions can have long lasting effects.

    Of course, we can't change what has happened - and we can't bemoan our decisions on which way our treatment paths went - whether we made the decision - or it was made for us. 

    Personally, I feel that you did everything that could be done to put yourself in a better position - for yourself and your family.

    There can never be regrets for any of that. 

    Now sadness.....

    Along with being sad, Steve, don't you think that a part of your feelings is a LONGING FOR? 

    Another words, you just longed to make the adaptions to your new life and then move through that.  The sadness you feel is the longing for that - which you were striving for?

    I'm not the psych - you are.....but that's the best I can come up from a layman's point of view.

    Your current plan sounds spot on to me.....extending time is alot of what we do in this journey....and I hope you get all the time you need to do what you want now.  It's about you now.

    I'm saddened by your news but strengthened by your resolve.

    May everything be as good as it can be - and we'll continue to hope for you.

    -Craig

  • annalexandria
    annalexandria Member Posts: 2,571
    This hurts to read.

    I am saddened beyond words that the wretched cancer is back.  You have been such an inspiration to so many of us, Steve...even this post shows your incredible spirit.  Whatever the future holds, and whatever choices you make, we're with you in spirit.  

    Love, AA

  • lesvanb
    lesvanb Member Posts: 905
    Ah Steve; my heart breaks with this news

    I agree with the living with no regrets comments; living each day as best you can; and Healing into Life and Death as Stephen Levine writes. 

    I love your words here and they give much meaning to my own life and living it well:

    "Feel sad as much as all else-  a month ago I was up ontoprosthesis, working full time, pushing forward with aims and goals and all that has shifted. But shifting isn't the same as giving up- just an adaptation. Strangely I also still don't think I regret choosing the radical amputation- at the time it was right, gave me some good time and I'm pretty sure things wouldn't be much better even with that leg attached. Regrets really have no place here."

    I spent last week in Yellowstone, WY in Lamar Valley which in the spring is a smorgasbord of living and dying; prey and predators, all the babies being born and being eaten to feed the just born. As I struggled with my own disablities, I realized that what I loved about being immersed in the natural world, I still had. That just being here still fed my soul. That the changes wrought by cancer were not losses in a deeper sense; nor in that deeper sense had I gained anything before I had cancer. The moment I had was now, and how I responded to that moment was reality - not what I thought about how I was supposed to be doing physically or emotionally etc. There were a lot of tears; I don't quite know what the tears all meant but your use of "adaption" rings true . Adaptation can be a struggle, be painful, and be satisfying and peaceful.

    May you be blessed by all around you -family friends, nature... and may you live in grace.

    Holding you in my heart, Leslie

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Courage

    You have shown so much courage in your fight against this terrible disease.  We all waited for any word from you after your surgery - one that most of us have never heard of and one that you were doing not only to carry on, but for the science purpose of going through all that you did for days on end.  I'm glad that you got some time away with your family and are going to pursue another avenue for this journey you are on.  My prayers are with you as you continue to fight once again.  My heart is aching for you, but know you have thought much about your situation.  We are truly honored to have you on the board.

    Kim

  • ron50
    ron50 Member Posts: 1,723
    G'day Steve
    Tough break mate. All through your fight you have accepted the fact that you have cancer and that you can only do what you can do. In your case that has been a great deal. I wish you and your family well for what is to come, my thoughts are with you and them, respectfully, Ron.
  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 508
    Steve
    So hard to read your post, I've read it again and again, just wanting to read something good. I wanted you to be cured for good. You have been through so much and fought too much to get this far. I hope you can get your pain under control and make some great memories with your wife and kids.
    Sandy
  • Cathleen Mary
    Cathleen Mary Member Posts: 827

    Steve
    So hard to read your post, I've read it again and again, just wanting to read something good. I wanted you to be cured for good. You have been through so much and fought too much to get this far. I hope you can get your pain under control and make some great memories with your wife and kids.
    Sandy

     
    Steve,
    I am sad with you.

     

    Steve,

    I am sad with you. You have fought so hard and went where 'angels fear to tread.'  Your story and your  spirit led us all to hold our collective breath during your unprecedented surgery and recovery. 

     I am also uplifted by your resolve. Be assured of the prayer and best wishes of so many that you will enjoy far more good times and length of years than you can now imagine.  

    Strength and peace,

    Cathleen Mary

  • maglets
    maglets Member Posts: 2,576

     
    Steve,
    I am sad with you.

     

    Steve,

    I am sad with you. You have fought so hard and went where 'angels fear to tread.'  Your story and your  spirit led us all to hold our collective breath during your unprecedented surgery and recovery. 

     I am also uplifted by your resolve. Be assured of the prayer and best wishes of so many that you will enjoy far more good times and length of years than you can now imagine.  

    Strength and peace,

    Cathleen Mary

    dearest doc Steve

    I am just down from my mosquitoe infested hovel in the north ....your message gob smacks me.  Steve you have fought so hard ...you have made so many difficult and profoundly difficult decisions.  You have gone before us my friend.....when I think of you I think of Robert Falcon Scott and Ernest Shackleton.....men who have gone before and suffered long and hard....

     

    oh steve....your courage your resolve....I am lost ....I send you love

    mags