My husband is NED

Sandi1 · May 2009

Ok, now that my husband is NED, he is still doing maintenance chemo to keep the beast away. I'm fine with that, my problem is that I find myself constantly worried that something is going to happen, that it's going to come back and he will hide it from me because he doesn't want me to worry. Everytime he sneezes, coughs, wheezes, gets out of breath, any little thing I start worrying. On the other hand he is gaining weight again, but his oncologist said it was time to start eating right and doing a little exercise, she doesn't want him losing too much weight. I really just want to enjoy my life with him, but I feel like something really bad is going to happen and we will end up back where we were a year ago. I don't know how to handle this, can anybody help me figure out how to deal with this stage of the disease?

Sandi

johnnybegood · May 2009

hello
im so glad your husband is ned.i have had surgery to remove tumor and curently going thru 12 tratments of chemo.i just finished #6 i dont know if i can take this anymore.im like you im always going to be afraid that it is going to come back even if i do finish all my treatments.i gues that is part of our new normal.dont know if i was any help but Godbless....johnnybegood

PhillieG · May 2009

NED
Sandi, I can't give first hand advice because I'm not NED, but...I always have looked at my cancer as that I could just as easily die from a car crash going to work than I can from cancer. There's probably a great risk on the road statistically speaking. I would just try to enjoy every day and live life to the fullest every single day because we never know what lies ahead.
I hope this comment doesn't worry you more, it's not my intention.
-phil

angelsbaby · May 2009

PhillieG said:
NED
Sandi, I can't give first hand advice because I'm not NED, but...I always have looked at my cancer as that I could just as easily die from a car crash going to work than I can from cancer. There's probably a great risk on the road statistically speaking. I would just try to enjoy every day and live life to the fullest every single day because we never know what lies ahead.
I hope this comment doesn't worry you more, it's not my intention.
-phil

Ned
Just enjoy the time together and try not to worry, I was like you i would ask angel are you ok what do you think that was things like that and i just upset him so i stopped. But i still worried its hard.

michelle

KathiM · May 2009

Breathe....In and out....
Enjoy every moment.

These panicy feelings fade, but it takes time. You have been operating in fight mode for so long, that you don't know anything else. Do things that bring you joy. The great thing about 'maintenance' is that the doctors are making sure to keep an eye on him!

CONGRATS! and a BIG naked happy dance for NED!!!

Hugs, Kathi

kimby · May 2009

Sandi
I am not NED and just became NEAD so my experience really isn't first hand. A very close friend of mine is now 11 yrs NED from non-hodgkins lymphoma. I can tell you that a cough will never be JUST a cough again. She still struggles with that and with every little thing her first thought is: it's back. Well, it isn't. Scanxiety also doesn't improve really. Just like you learned to live with canzer, you learn to adjust to NED and the anxiety and worrying gets better.

This is as rough as a situation emotionally as you were in a year ago. Who would think? But there isn't much support out there. Friends and family think the only feeling you should have is relief. They think it's over and time to get on with things. And you will and have tried to go back to 'normal'. But life will never be what it was and you are different now, too.

I think it just takes time and space. But, luckily, you have time now. Hope and time....my new mantra! I'm sorry I don't have any good answers. I can only offer you encouragement and understanding and I hope that is enough for now.

Hugs,

Kimby

Buzzard · May 2009

kimby said:
Sandi
I am not NED and just became NEAD so my experience really isn't first hand. A very close friend of mine is now 11 yrs NED from non-hodgkins lymphoma. I can tell you that a cough will never be JUST a cough again. She still struggles with that and with every little thing her first thought is: it's back. Well, it isn't. Scanxiety also doesn't improve really. Just like you learned to live with canzer, you learn to adjust to NED and the anxiety and worrying gets better.

This is as rough as a situation emotionally as you were in a year ago. Who would think? But there isn't much support out there. Friends and family think the only feeling you should have is relief. They think it's over and time to get on with things. And you will and have tried to go back to 'normal'. But life will never be what it was and you are different now, too.

I think it just takes time and space. But, luckily, you have time now. Hope and time....my new mantra! I'm sorry I don't have any good answers. I can only offer you encouragement and understanding and I hope that is enough for now.

Hugs,

Kimby

Life and Death and the Fears of each...........
My wife and I have really talked about all this in great detail...The constant fear and worries of whether this will reoccur or not. I have found that I really think the caregiver (and Im only referring to my situation) my wife was actually more afraid of me reoccurring than I am or was. I have reassured her that I will be fine either way and its like anything else, its just something that we will all go through one of these days. Death is inevitable, and how we go or at what age is not determined by us so we have to get a mindset that allows us to move on with our lives. My wife and I are comfortable now "only" because I finally told her face to face that I wasn't afraid to die anymore. I have no intentions of it but if it happened that it would be ok for me. I understand that she feels helpless and she told me to know that because she knew now that I was ok with dying it makes her a lot less stressed to think she is helpless in being able to do more for me to keep me alive.

I guess what I am trying to get across here is that first you have to accept the fact that someday you will pass on, no ifs ands or buts...you just have to get the right mindset and know that it can happen at any minute to not only you or your loved ones but to anyone, cancer or not. So, love, enjoy, live, and don't let the thought or fear of dying keep you from living.......Get comfortable with your situation and move on. Im pretty sure your hubby will feel the same way if you really have a heart to heart with him........Good Luck

nudgie · May 2009

Caregiver
Being the caregiver is one of the hardest jobs. You will constantly worry about your spouse, it's nature.

My husband to this day still worries about me. Doesn't like me to cut the grass, Ha Ha

. He is still very over protective even though it is almost 3 years NED. I love him and understand his concern, but we try to compromise to make him happy.

It will take awhile, but I found it is best to take one-day-at-a-time along with baby steps. Before you know, things will get back to normal somewhat.

Shayenne · May 2009

nudgie said:
Caregiver
Being the caregiver is one of the hardest jobs. You will constantly worry about your spouse, it's nature.

My husband to this day still worries about me. Doesn't like me to cut the grass, Ha Ha . He is still very over protective even though it is almost 3 years NED. I love him and understand his concern, but we try to compromise to make him happy.

It will take awhile, but I found it is best to take one-day-at-a-time along with baby steps. Before you know, things will get back to normal somewhat.

I agree Buzz...
... I have the same mindset as you, I know I am going to die anyway, with or without this disease, and it has to be accepted as that. What if my caregiver died in a car wreck before this disease even took me? it's so vice-versa with me as well, because we are ALL going to die anyway, it's a part of living, what happens after you die I think just scares people more, and How they are going to die, alot just don't want to suffer, but honestly, from how the saying goes, "Dying is easy, it's living that's hard", I keep that in the back of my head, and have faith that Death may not be as bad as what everyone thinks it may be, sounds strange, I know, but I believe in life after death, and our souls do live on. (MY BELIEF, not pushing it on anyone).

But I'm not NED, I will only be on my 5th treatment next week, and should I ever get NED, it will be the same how I am living now....day by day, enjoy what I have now, I refuse to think ahead, except for good things, like grandbabies, kids weddings, hoping to be around for those, but should I not be, I will be there in spirit anyway

Hugsss!
~Donna

usakat · May 2009

Good News!!!
Hello Sandi ~

So great to read your husband is NED! That is great news...

I think once a cancer patient, always a cancer patient, whether in active treatment (maintenance chemo in your husband's case) or not. What I mean is cancer will always be a part of a cancer survivor's self-awareness, even as the years go by. The important thing for a cancer patient is to not let that awareness dominate their life.

I think to myself, I am more than my cancer.

There is a sundial at Thornby Church in Northamptonshire, England, with a caption at the sundial that reads:
MARK WELL MY SHADE, AND SERIOUSLY ATTEND
THE COMMON LESSON OF A SILENT FRIEND,
FOR TIME AND LIFE SPEED RAPIDLY AWAY;
NEITHER CAN YOU RECALL THE FORMER DAY.
YOU ARE NOT ABLE TO RECALL THE PAST,
BUT LIVE THOU THIS DAY AS IF THE LAST.
(Sun Dials and Roses of Yesterday; Garden Delights Which Are Here Displayed in Very Truth and Are Moreover Regarded As Emblems, written by Alice Morse Earle, published in 1902)

Thornby Church in Northamptonshire, England, photo by Ian Rob

The wise words inscribed at Thornby Church is much like the more modern quote of, "Yesterday is history. Tomorrow is a mystery. And today? Today is a gift. That's why we call it the present."

So I encourage you and your husband, and every person on the planet, to cherish each and every day. Mourning the loss of yesterday or worrying about what may or may not happen tomorrow robs you of the joy of living today. Celebrate each new day as the gift of opportunity and possibility it is...

Wishing you and your husband many blessings for happiness and love....
Katie

Sandi1 · May 2009

Thank you
Thank you all, your comments are very helpful. I think I just need to take some time to get myself straightened out so I can enjoy many more years with my husband.

Thank you again

Sandi

dmdwins · May 2009

Sandi1 said:
Thank you
Thank you all, your comments are very helpful. I think I just need to take some time to get myself straightened out so I can enjoy many more years with my husband.

Thank you again

Sandi

Time really does help
Sandi,

Time will help. Soon it will not be all you think about. I don't think it every really goes away totally but less and less and less. I think I may have even had a few days where I went a whole day without thinking about it. I hope that may eventually turn into days, weeks or longer for you ,too.Upcoming testing seems to be the times when I think about it the most (pet/ct next week)then it gets better.
You and your husband have been through so much-I wish you many many anxiety free years.

Dawn

Buzzard · May 2009

dmdwins said:
Time really does help
Sandi,

Time will help. Soon it will not be all you think about. I don't think it every really goes away totally but less and less and less. I think I may have even had a few days where I went a whole day without thinking about it. I hope that may eventually turn into days, weeks or longer for you ,too.Upcoming testing seems to be the times when I think about it the most (pet/ct next week)then it gets better.
You and your husband have been through so much-I wish you many many anxiety free years.

Dawn

Great responses .......
Those are all responses that helped me also......Thanks guys and gals...I think about it now maybe once or twice a day and its only been since march since mt last treatment...It consumed me at first but now is a past that is still there but not as often...Life is Great.......

bdee · May 2009

Buzzard said:
Great responses .......
Those are all responses that helped me also......Thanks guys and gals...I think about it now maybe once or twice a day and its only been since march since mt last treatment...It consumed me at first but now is a past that is still there but not as often...Life is Great.......

NED
I'm kind of new to this. What does NED and NEAD mean?

VickiCO · May 2009

bdee said:
NED
I'm kind of new to this. What does NED and NEAD mean?

NED & NEAD
NED - No Evidence of Disease

NEAD - No Evidence of Active Disease

Always something to learn here! Vicki

Julie 44 · May 2009

VickiCO said:
NED & NEAD
NED - No Evidence of Disease

NEAD - No Evidence of Active Disease

Always something to learn here! Vicki

keep going
Hey I am NEd for about a month..I TOTALLY understand where you are coming from.....But I refuse to let the monster take away anymore of my life!!!! I am not going to think about every little ache and pain because that means the monster is winning...Live your life right now because we really don't know how long anyone has..So just enjoy while you can and DON"T let the monster win......Julie

bdee · May 2009

VickiCO said:
NED & NEAD
NED - No Evidence of Disease

NEAD - No Evidence of Active Disease

Always something to learn here! Vicki

NED
Thanks, Vicki.

What is the difference, though. My doctor told me last week that even though I have seven tumors that didn't change in size after either intensive treatments, that he felt that I should start maintenance chemo. My CT scan showed them all still there, two had grown, one had shrunk but because my CEA was staying around 2.5 he considered the tumors all "dead" and inactive. Is that the same as NEAD?

Debbie

VickiCO · May 2009

bdee said:
NED
Thanks, Vicki.

What is the difference, though. My doctor told me last week that even though I have seven tumors that didn't change in size after either intensive treatments, that he felt that I should start maintenance chemo. My CT scan showed them all still there, two had grown, one had shrunk but because my CEA was staying around 2.5 he considered the tumors all "dead" and inactive. Is that the same as NEAD?

Debbie

Debbie
I will repost Kimby's orginal words on NEAD so you can get a perspective. NED means they can no longer see any tumors, or mets. I hope this helps, and Kimby, sorry for hijacking your post but it explains better than I can!

Vicki

"I was dx 22mos ago. I'm stage IV with mets to the liver and celiac lymph nodes. Systemic chemo has failed me each time (although my only chemo breaks have been for surgeries) and I'm running out of chemo options. Currently I'm on Avastin and Xeloda, with occasional mitomycin. Here is a portion of what is posted on my blog (on this website and caring pages).

After my failed surgery in January (open/close liver non-resection) I started a new chemo cocktail and liver radiation. The surgeon had found more/larger tumors on the liver than the pre-surgery had indicated and he also found 3 positive celiac lymph nodes. 3 weeks after completing the rads I had a CT scan. Again, the lymph nodes didn't show up. They have never shown on any CT I've had. The tumors we had radiated (all 6 of them) were already showing signs of necrosis. VERY good news. More chemo - wait and see with rads. I asked for a PET scan to try and locate any nodes we can work on while waiting for more liver regeneration.

My team took my case back to the tumor board for node treatment approval. The tumor board was so pleased with my progress that I was approved "enthusiastically and unanimously". A tumor board that is enthusiastic? Cool. So I had a PET scan last week. The scan was Wednesday and The Liver Symposium started Thursday evening. Off to Chicago, scanxiety and all.

I have a special arrangement with all of my docs to get test results immediately - I don't wait for appts. I email my doc as a reminder and they fax the results to me as soon as they become available. So I emailed Dr Ted and my results were faxed on Friday. Great, I'm in Chicago. I went to my room between sessions and dinner (we got a 2 hour break) and checked my email on my phone. Dr Ted had responded more completely than usual, but here is the message in its entirety:

"Will do.
You have had a complete response; no evidence of active disease.
I am so pleased
Ted "

No Evidence of Active Disease - Magical words. Words I never thought I'd hear. It is real. His PA, Leah, called this morning to cancel my appt with him for tomorrow. He only sees sick people and I don't qualify anymore.

How long will it last? Who knows? I'll take 3 months, 3 years, 30 years....whatever I can. I will see my medical oncologist tomorrow for my chemo treatment plan. I imagine it won't be much different than what I'm on. Maintenance chemo? (chemo lite) Probably. I can live with that for a very long time!

This is not No Evidence of Disease. This is not a 'cure'. But it is wonderful in its own right. I am content with this small miracle for now. Yes, I still want more. I will get there. Baby steps. More waiting. More scanxiety. I'm still Living with canzer. Notice the word capitalized in that sentence. I'm now LIVING large! LOL

Time to remind my docs of their job so they don't slack off now. They need to get me 5 years. In that time, I believe technology will get me 5 more, and 10 will get you 20 every time! Rock on!

Kimby"

My husband is NED

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