CSN Login
Members Online: 9

From NED to terminal in one evening

steved
Posts: 836
Joined: Apr 2004

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

tanstaafl's picture
tanstaafl
Posts: 945
Joined: Oct 2010

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.

jen2012
Posts: 1186
Joined: Aug 2012

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.

Chelsea71
Posts: 1168
Joined: Sep 2012

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's picture
geotina
Posts: 2044
Joined: Oct 2009

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's picture
wolfen
Posts: 1173
Joined: Apr 2009

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
Posts: 23
Joined: Dec 2009

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's picture
Maxiecat
Posts: 524
Joined: Jul 2012

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's picture
Lovekitties
Posts: 2893
Joined: Jan 2010

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's picture
LivinginNH
Posts: 1269
Joined: Apr 2010

 

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
Posts: 1528
Joined: Oct 2011

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's picture
Semira
Posts: 271
Joined: Mar 2012

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

Sending a warm hug 

Petra

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

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's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

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's picture
annalexandria
Posts: 2183
Joined: Oct 2011

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

Annabelle41415's picture
Annabelle41415
Posts: 4205
Joined: Feb 2009

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

lesvanb's picture
lesvanb
Posts: 905
Joined: May 2008

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

ron50's picture
ron50
Posts: 1266
Joined: Nov 2001

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
Posts: 437
Joined: May 2012

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
Posts: 528
Joined: May 2011

 

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's picture
maglets
Posts: 2396
Joined: Jun 2006

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

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

I am so sad to read your post. I know it has been a very difficult fight but i know you will continue to live & not just exist. you & your family are still in my prayers.

judy 

RickMurtagh's picture
RickMurtagh
Posts: 530
Joined: Feb 2010

Steve,

I am elated to see you satisfied with the tough decisions you have had to make.  I am saddened more than I have been for some time on hearing about the ones you will have to be making now.  I had a sacral dx and it scared me senseless.  My dx turned out to be something else - you have had to deal with it 2X.  I can not imagine what you are going through.  I am glad you have quite a family for support.  You remain my roll model for how to deal with cancer no matter what happens or when.  Your courage and resolve are inspiring.  Thank you.

peace,

Rick

My new battle cry - "Regrets have no place here!"

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

So sorry your cancer came back with such a vengeance. This reminds me again to appreciate every good day. You have been an inspiration to everyone here. I just pray that you have many good days to enjoy.  Jeff

Kathleen808's picture
Kathleen808
Posts: 2278
Joined: Jan 2009

Steve,

I am so sorry to hear this news.  You are an incredibly brave man and I know you love your family so much and have taken all steps to be with them.  I pray that the docs can give you some reprieve and you can have some more great times with your family.  You will remain in my prayers.

Aloha,

Kathleen

fatbob2010's picture
fatbob2010
Posts: 371
Joined: May 2012

Steve,

Reading your post after all that you have been through the last so many months is heart rending for me.  You are a role model that is without equal.  

I have not totally wrapped my head around this sudden reversal.  Your courageous and inovative approach to the containment of the disease is still an inspiration to me.  

As you prepare for what may be a final battle. I continue to be in awe of your courage and clarity of direction.  The decision to try and maximize quality of life over an extension of perhaps months.  An extension that does not offer more than breath and pain is one we may all have to face.  I may add that, in mycase, it is one I dread having to make.  

No matter what the future holds for any of us it is my hope that we can face it without regrets.

Peace and comfort Steve.

Art

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Hard news to hear! So many of us followed your story of how you went to such lengths to get rid of the cancer. So many people pulling for you.

Cancer is so grossly unfair.

Steve, may your days be full of happiness, peace , family, friends and perhaps another wine-soaked lunch.

Your Friend in California,

Tommycat

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

So sorry to read this.  You have my hopes, prayers, and condolences.  I know that someday (hell, it could be tomorrow) that I will likely get this same news, and I freaking HATE that this has to happen to anyone.  Your attitude appears to still be fantastic, and you have shown great strength and resolve so far in your fight against this horrible disease.  Best of luck with whatever you decide to do in the future (more treatment or not).  I wish I could say more or be more helpful, but I really don't have words to express how sad I am to read this type of news (and Joe's post as well).  My Wednesday has really taken a turn for the worse.  To be perfectly honest, I have been kind of avoiding the forum recently, specifically for this reason, as it makes me very sad and emotional to read about members here getting bad news or passing away.  May likely not visit again until after my CT scans, but will update after that as some here are interested in how the German therapies worked (or didn't) for me.

Tedd

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

I am saddened by your post Steve. You are brave and I am happy you are wth your family and you will have more time to do things with them. Since I've had a brain tumor and sirspheres treatment for my liver I keep wondering what next. It is so hard to live with cancer and how it can force our time constraints with family, work and doing whatever else we desire. It is the quality of our time and relationships but it is still hard to balance and find absolute closure. You are in my prayers and I cant believe god willed this on anyof us. Its truly the people on these boards that understand the emotionsal process and reloading we have to do each step of the way dealing with this disease.
I am hoping your pain will subside and you will be doing what you want for you and your family. You have been all along but cancer forces us to keep evaluating and track our time.
I am very sorry this has happened Steve. I know I will be facing limited options and so much can change for me quickly.
Barb

Moesimo's picture
Moesimo
Posts: 1075
Joined: Aug 2003

Steve,

I remember your story well. Tears are streaming as I write this. You have struggled so much and done so much in your cancer fight. You made some difficult choices along the way. Stay strong as you have been. I am sending hugs and prayers. You have amazing strength that will be so important in the upcoming days. Hug your wife and kids. I know you will. 

 

Maureen

 

Sonia32's picture
Sonia32
Posts: 1064
Joined: Mar 2009

I hate cancer more then anything in life.
It takes the best people away to soon
But it can not take away a fighting spirit which you have steve.
Sending massive hugs to you

sonia

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Steve,

I'm so sorry to hear your cancer came back.  I hate the word Cancer!  Prayers for you and your family.

smokeyjoe
Posts: 1428
Joined: Feb 2011

I don't know what to say,  you've certainly gone above and beyond in your fight  Frown

steved
Posts: 836
Joined: Apr 2004

Haven't found time and energy to respond more individually to people's responses but they are all appreciated and added to helping me get through these last few weeks. Starting to regain control of pain and so functioning is improvng and now under the palliative care and hospice which helps to have a single coordinator of care. Wife off work for a period and we are snatching good moments out for lunches as things allow. Kids adapting well but aware of real change in functioning. Hardest shift is from  setting aims and being confident of getting there-work, prosthetic etc- and now really only about controlling things and preventing deteriorations. Still the focus on moments of pleasure is centralband reaching decisions around work andmoney that should again put another area of uncertainty to rest. Prob will opt for a trial irinotecan and cetuximab if things continue to settle but onc putting no pressure on. She appreciatesthe decisions we have made and will support whatever direction we choose- still don't feel a huge fight for chemo in me , will see how next week goes.

Overall, head settling down, control coming back and getting better at finding those sustaining moments we all need. Will continue to be here as this board has been  hugely valuable throughout my journey and I appreciate all I have gained. My use may vary but will contribute differently at times.

Thanks again for all your contributions,

Steve

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

You just do the best that you can, Steve:)

We understand....

It can take a lot of effort to think and post - and some days are harder than others. 

Will enjoy having you here anytime that you want or can be here....the connectedness does help as you mentioned.

Wishing you well...with as many carefree and pain-free days as there can possibly be:)

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

Sending lots of love from over the pond.  AA

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Just know that we will support you whatever you decide....  Hoping for the best for you and your family. 

Tedd

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

You have been such an inspiration to me and I am here to support you. I hope you have many wonderful family times and much more time to enjoy them. Thanks for sharing .....~ Ann

Luckygirl2
Posts: 308
Joined: Mar 2012

for you and your family.  You are so brave.  My thoughts and prayers are with you and your family. 

 

Debbie

Grace14
Posts: 60
Joined: Sep 2011

I am so sad by this news! I usually don't post much but I always read your comments! You are truly an inspiration and a true fighter! I wish you peace and love in your days ahead!

rogina2336's picture
rogina2336
Posts: 188
Joined: Apr 2011

Everyone here has said it all, enjoy all your precious moments.  Kim

lauragb
Posts: 368
Joined: Aug 2011

Not fair, but then you know that.  I know you will optimize your treatment and time making the best decisions for you and your family. 

You still have time to enjoy life.  Here's to more wine soaked lunches.

Sending love, light and prayers your way.

Laura

Nana b's picture
Nana b
Posts: 2746
Joined: May 2009

This really sucks!    Glad to see how everyone comes together here; you have many friends that care about you, as I do.  

 

Yes, plesae hang in there and enjoy llife as best as we can!  Big hug!  

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Wow Steve. Not exactly the post I was hoping to see... but I completely understand your feelings.

Never regret decisions made because they had a reason when they were made...

I appreciate you letting us know what is going on with you ...

My wish for you ... is joy and happiness and no regrets... life is life... happiness and peace!... <3

Donna

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

You've done things that very few people in the world had done. Your life was like climbing Mount Everest. And yes you got some frostbites, lost a limb, went trhough a lot of pain, but you did it. You are like one in a hundred million. You have a supporting family, friends and community and you can proudly say to everybody's face: I'v done all this. I'm beat, tired and maybe broken some places, but I'm still here after all these trials. You could be one of the people who died or got terribly injured in car accidents today, at their job, at home etc. But you are here, still watching the sunrise everyday, breathing, heart beating, because you are one of the strongest man in human history and that's very special.

We all love you and take strength from you.

Wish you not to forget to notice the beauty in the world every day and go to bad with the conclusion that this was a good day and for a few ours you are gonna be at peace while you are sleeping.

Laz

Helen321's picture
Helen321
Posts: 724
Joined: May 2012

I'm sorry about your recurrence.  I am a strong believer that no one can predict what is going to happen next.  Doctors are not the end all be all.  You make decisions that best fit the time you're in and then adapt.  I've completely adapted to my ostomy at this point, it is what it is.  My uncle was given three months, he lived six years.  My aunt was told she was terminal, she's alive and kicking 10 years down the road.  We just don't know what will come out next or what life will bring us.  Keep on keeping on and enjoying this crazy life of ours.  Take the break you need and then decide.  You have a large group of people rooting for you!

Patteee's picture
Patteee
Posts: 946
Joined: Jul 2009

well, I wasn't expecting this.  Makes me sad for you Steve, your wife, your kids.  The people we love the most who will hold on the tighest.  Pack the time with sweetness and memories for all to have for a lifetime.  As a fellow in this battle we did not choice- everyday I wake up, feel the sunshine for those that can no longer, watch children grow up because their mom left way to soon and as a Mom, I do that for her.  I carry the pieces of lives in my heart and soul, and I step forward going forward for all.  Your piece will be there someday, and I will walk forward with pride that our lives touched.  Wishing you a peaceful journey Steve,

 

With Love from Minnesota

 

Patteee

hippiechicks
Posts: 302
Joined: Sep 2012

Steved .. I really don't know what to say .. as everyone has said it all.  I would like to tell you though how much I admire your strength and courage.  I have followed your posts for some time now and you have been a true inspiration to me.  I wish you and your family only the very best for your new path in this journey ... capturing and enjoying the moments. I am glad to hear you have all the supports you need for your upcoming decisions. 

One day at a time ... laugh, live and love.

hippiechicks
Posts: 302
Joined: Sep 2012

Steved .. I really don't know what to say .. as everyone has said it all.  I would like to tell you though how much I admire your strength and courage.  I have followed your posts for some time now and you have been a true inspiration to me.  I wish you and your family only the very best for your new path in this journey ... capturing and enjoying the moments. I am glad to hear you have all the supports you need for your upcoming decisions. 

One day at a time ... laugh, live and love.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network