Is it Ok to hope?
My husband, Hank, was dx 10/09 with stage IV rectal cancer, with lymph involvement and liver mets in Oct 09. We has several opinions all of which were similar. Liver was inoperable, and rectal tumor required radiation and chemo before surgery could be considered and even then would require permaenet colostomy due to location, something jhe is adamamently opposed to. Dr's were not very optimistic. I was totally devastated, but kept it in, stayed positive for my husband, never showed my fears. They started him on Xeloda almost immeidatley, Dr felt good option for him as he is wheelchair bound as the result of a stroke 9 years ago (at age 53!). We did 5 weeks of rads and then began weekly erbitux in Feb. Fast forward to last week. CEA is normal (2 mos in a row) Had is first PET/CT (others had always just been CT) results showed some uptake at the primary site (since this was a baseline PET there was nothing to compare it to) and no evidence of distant metasteses. The liver lesions were completely gone. The Dr continuted to impress on us that there was no evidence of disease anywhere but at the primary site, and how well he has responded to treatment. Needless to say I was beside myself.
Now I've had a few days to digest the news I have once again become afraid. Afraid this is just the calm before the storm, or an evil trick designed to let our guard down.
To those of you who have been living with this monster, is it OK to hope? Is this real progress or just a temporary repreive? I know no one can really know, I guess I'm just looking for someone to tell me it's OK to be happy for a little while. The Dr said to just enjoy our summer, I really want to but can't help but think that the miniute I do things will turn bad.
Boy reading this back I soumd pretty pathetic, not to mention a little paranoid. I guess I am so used to putting up a brave front that I feel in this forum, with others who know what it is like, I can voice some of the stuff I've been holding down for so long
Sorry to be such a downer, and thank you for letting me vent a little
K
Comments
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Thank you for sharing your
Thank you for sharing your story. I know it is hard to say our fears out loud, however, it is sort of cleansing. It is ok for you to feel anxious about what is ahead, we all are, but every day Hank feels good,so do you-- enjoy them. Those are the days we are all sure of. Unfortunately we all live in the "waiting" stage, but do your best to be positive, it really does promote good health. I will keep you both in my thoughts and prayers and hope for you to have some joyful peace! Best to you... Jean0 -
Yes
Yes,it is ok to hope.I had chemo,and radiation at the same time,then surgery 6 weeks later.The tumor was big enough that it was pretty much blocking my intestine,but the chemo and radiation shrank it alot.It was also attached to my tailbone.now I have been NED for 2 years,and I have a permanant colostomy,and it is no big deal.The doctor couldn't give me any guarantees,so I will enjoy the summer.This is a good place to come and vent,and unload,so ask any questions you want.Good luck.0 -
Not a downer at all...
Hi 'K' and I'd like to say I'm glad you found this group. Nothing you said was a 'downer'. I know I have had the same feelings you are describing at one time or the other. I was also diagnosed in Oct.2009. I think for several months my husband was more scared than I was but he too presented a brave front.
This forum is a good place to come and vent and express your fears AND hopes. My motto has always been "I live in hope" so of course your thread title caught my attention.Absolutely nothing wrong with hoping and being happy.
Best wishes for a good summer.
-Pat0 -
Hope is my greatest ally in
Hope is my greatest ally in fighting this disease. I had two colorectal tumours which cannot be seen after chemo + radiation last summer and more chemo starting last September. As well I had 4 liver mets + now only 1 can be seen on the scan (+ is ~ 1/2 its original size). I have not had surgery for any of these tumours. I am trying to live my life 1 day at a time + in 3 month stretches (I get a CT scan every 3 months, which determines my treatment for the next 3 months). My advice is to try to enjoy every day + live with hope. It sounds like your husband has responded well to his treatment. This gives you much more reason to be hopeful than if it wasn't working + even if one treatment doesn't work another may - there are other alternatives - each of us responds differently to different chemo cocktails. There are always new treatments coming along, too.0 -
no apologies needed!
Yes, it's okay to hope- you SHOULD hope!! It sounds like your husband responded to chemo very well- that's a very good sign! Not everyone responds well at first, so I think it's very good news that your husband has! I don't have time to write much as it's late and my brain is shutting down for the night, but I just want to say- YES- THERE IS HOPE!!!!
I know how draining this all is- especially if you're trying to put on the brave front. I'm the one with cancer & I'm the one who puts on the brave front for my husband and family. It's hard sometimes to be the cheerleader when I'm the one with the cancer! But, I'm hanging in there & it's been almost 3 years since my diagnosis. I'm still in treatment, but I'm still here and am still quite energetic and do all the normal "mom" things without much problem (except I need a mid day nap about half the days).
Best wishes! It has truly been my faith in the Lord Jesus that has gotten me through all this & I give credit to God for the faith and strength.
Take care-
Lisa0 -
Ms K......let your husband know its alot better living with alisa42 said:no apologies needed!
Yes, it's okay to hope- you SHOULD hope!! It sounds like your husband responded to chemo very well- that's a very good sign! Not everyone responds well at first, so I think it's very good news that your husband has! I don't have time to write much as it's late and my brain is shutting down for the night, but I just want to say- YES- THERE IS HOPE!!!!
I know how draining this all is- especially if you're trying to put on the brave front. I'm the one with cancer & I'm the one who puts on the brave front for my husband and family. It's hard sometimes to be the cheerleader when I'm the one with the cancer! But, I'm hanging in there & it's been almost 3 years since my diagnosis. I'm still in treatment, but I'm still here and am still quite energetic and do all the normal "mom" things without much problem (except I need a mid day nap about half the days).
Best wishes! It has truly been my faith in the Lord Jesus that has gotten me through all this & I give credit to God for the faith and strength.
Take care-
Lisa
colostomy than with a tumor, as my living since Sept 09 demonstrates......As for hope-that is an essential, along with an overall strong positive attitude, even if there are times of fear, depression and agony.......you fall back on your unwavering belief that,ultimately, you will make it......steve0 -
I feel much like you. Hope
I feel much like you. Hope is all I can think about some days. I think if we don't have hope we have nothing.
It sounds like your husband has responded very well to treatment.
You are not pathetic! Just a wife that cares and is scared and all the other stuff it brings out when you find out cancer is in our lives. Glad you vented. I have don it myself. Paula0 -
Hope is the way!Paula G. said:I feel much like you. Hope
I feel much like you. Hope is all I can think about some days. I think if we don't have hope we have nothing.
It sounds like your husband has responded very well to treatment.
You are not pathetic! Just a wife that cares and is scared and all the other stuff it brings out when you find out cancer is in our lives. Glad you vented. I have don it myself. Paula
As others have said in this post, I have read all kinds of wonderful stories about stage 4 survivors. Hang in there and I wish you well.
Cheers,
Lance0 -
Only stage III rectal....BUT.....
by the stats, I was given 6 months to live, or 37% chance of a 5-year survival. That was December 2004, more than 5 years ago, and I remain cancer free. Of that and the breast cancer found 8/2005, 8 months after the rectal.
It does come down to locking the fear away, not completely...you guys need to remain vigilant for signs of change...but getting out there when you feel good enough and living life!!!
Hope? It's what I lived for and on! I visualized my time when I was cancer free. Took care of myself. Still do.
Hugs to you both, Kathi0 -
Hope
Of course it is good to hope! And nothing you wrote was a downer - in fact the opposite. It sounds very good that chemo and radiation worked and shrunk everything down.
I would mention though, that since there is still uptake at the original tumor site, he really needs to consider surgery and the colostomy if that is the only option after surgery. Better to be alive with a colostomy than dead without one. There are so many people living with them that would agree.
This is only my opinion here, but since you've posted, I feel compelled to write. While I would not say "Do not enjoy your summer," I'm kind of shocked that the oncologist would say "Enjoy your summer," and not press for surgery, or continued chemo if he still won't agree to surgery. I would not be comfortable going a summer without chemo when a PET shows uptake at the primary site. You can't expect the cancer to stay contained there without doing something about it. If he won't do surgery and doesn't want to do more chemo, I would at least be looking into alternative or Eastern medicine and be doing something proactive to fight. Otherwise everything he's done so far might be for nothing and you will lose that hope.
The standard is to do the chemo and radiation, followed by surgery, followed by mop-up chemo. You can continue to have lots of hope as long as you keep fighting. But to stop doing anything when there is evidence of cancer just doesn't make sense.0 -
Still in treatmentKathryn_in_MN said:Hope
Of course it is good to hope! And nothing you wrote was a downer - in fact the opposite. It sounds very good that chemo and radiation worked and shrunk everything down.
I would mention though, that since there is still uptake at the original tumor site, he really needs to consider surgery and the colostomy if that is the only option after surgery. Better to be alive with a colostomy than dead without one. There are so many people living with them that would agree.
This is only my opinion here, but since you've posted, I feel compelled to write. While I would not say "Do not enjoy your summer," I'm kind of shocked that the oncologist would say "Enjoy your summer," and not press for surgery, or continued chemo if he still won't agree to surgery. I would not be comfortable going a summer without chemo when a PET shows uptake at the primary site. You can't expect the cancer to stay contained there without doing something about it. If he won't do surgery and doesn't want to do more chemo, I would at least be looking into alternative or Eastern medicine and be doing something proactive to fight. Otherwise everything he's done so far might be for nothing and you will lose that hope.
The standard is to do the chemo and radiation, followed by surgery, followed by mop-up chemo. You can continue to have lots of hope as long as you keep fighting. But to stop doing anything when there is evidence of cancer just doesn't make sense.
We have not stopped treatment. He is still receiving chemo and will do so for as long as it works, or isn't necessary (if only) The surgery is a tougher one. He is so totally against the colostomy and given his other health concerns, wheelchair bound, paralyzed left arm and hand, significant weaness to the left leg, the onc and surgeon aren't pushing that hard and still want to try to treat with chemo/rads if possible. But it is ultimately up to him and he knows what not having the surgery can mean. I am trying very hard to soften him up on the subject
I so much appreciate everyone's, concern, good wishes and advice. This is a great group of compassionate people. I hope that I too will be able to offer some support to others in our circumstance
Thank you all!0 -
Hope is what we havektlcs said:Still in treatment
We have not stopped treatment. He is still receiving chemo and will do so for as long as it works, or isn't necessary (if only) The surgery is a tougher one. He is so totally against the colostomy and given his other health concerns, wheelchair bound, paralyzed left arm and hand, significant weaness to the left leg, the onc and surgeon aren't pushing that hard and still want to try to treat with chemo/rads if possible. But it is ultimately up to him and he knows what not having the surgery can mean. I am trying very hard to soften him up on the subject
I so much appreciate everyone's, concern, good wishes and advice. This is a great group of compassionate people. I hope that I too will be able to offer some support to others in our circumstance
Thank you all!
K,
Fisrt off welcome to the family, you will find comfort here, at least I have. Hope is what helps us get through our current what ifs' in life. So do continue to hope it can do no harm. You don't sound pathetic,as a caregiver for Hank you have a full plate and can be overwhelmed at times. Most of the time it's harder on you as a caregiver than it is on us with cancer. If you can, find a friend or maybe clergyperson to lean on, this is hard as you have found out. Also you can always post here with questions and concerns, I know sometimes I feel the weight of the world has been lifted off me when I post here. I think it's letting out everything that we keep bottled up inside, so we can put on our brave face for others that puts un-needed stress on us. It does sound like Hank has responded well to treatment so far, and that is a very good thing, just stay positive and it's okay to cry too. I do these days, it's just part of the process.
Don0 -
okay
When things get this scarry it okay to hope, pray, laugh, cry, scream, and etc. You do what ever it takes to get through this. This is the fight of you life.
Brooks0 -
That is good newsktlcs said:Still in treatment
We have not stopped treatment. He is still receiving chemo and will do so for as long as it works, or isn't necessary (if only) The surgery is a tougher one. He is so totally against the colostomy and given his other health concerns, wheelchair bound, paralyzed left arm and hand, significant weaness to the left leg, the onc and surgeon aren't pushing that hard and still want to try to treat with chemo/rads if possible. But it is ultimately up to him and he knows what not having the surgery can mean. I am trying very hard to soften him up on the subject
I so much appreciate everyone's, concern, good wishes and advice. This is a great group of compassionate people. I hope that I too will be able to offer some support to others in our circumstance
Thank you all!
I'm so glad to hear he is still on chemo. It has done so much for him already, maybe it will totally wipe out the cancer at the original site too, and surgery won't be necessary. Or it may mean that he'll have to stay on chemo indefinitely if he doesn't want surgery. If he is tolerating the side effects without much trouble I can see why he might want to just continue along this way - at least for now. As you said, it is ultimately up to him to decide how he wants to fight in this battle, and so far he's making a lot of progress towards winning!0 -
K
Of course it's OK to hope. Much of how I live is through variations of hope. I hope it goes away, I hope they develop new protocols, I hope I don't get hit by a car. I do not feel there are many things that are definite with the exception that we all will die of something some day. What that something is may not be known at all.
Often things that at one time are not operable can become operable. He may be saying "no way to the ostomy" at this time but who knows what he will do if push comes to shove. When one has few options it makes choosing something easier I've found.
Personally I have found that the term "NED" is thrown around too often. People WANT to hear it I think so if there is a small break in the action they seem to be declared NED right away only to see them a month later saying how "it" came back. This is just my observation. I hope he is NED, that happens too.
Don't sweat it either, you're not a downer. Vent away
-p0 -
Hope
You have every right to hope and hope for big things and one of those is getting him through this and cancer free. There are many people out there that have had very successful treatments and the "birthdays" of patients being seen year after year. You go right ahead and hope and never let go.
Kim0 -
YES!
Hi,
My Mom is the one with Stage 3 colorectal cancer. She had a large tumor removed in August 2009 along with part of her colon. She now has a colostomy bag. At 91, wthe family decided not to tell her she had cancer. She wouldn't make it through chemo so we decided to let her live out the rest of her life peacefully.
Mainly what I wanted to tell you is that the colostomy isn't that bad. She can change the bag herself and has been doing very well. I never thought she would make it home from the hospital, but she's been home for about 10 months now and doing amazingly well. She uses the colostomy bags that are closed end and disposable. They are very easy to change and don't bother her at all.
Yes, I do believe in hope. And, yes, I do think it's OK to be happy. Try to take it a day at a time and be thankful for every day you have with him. That's how I cope.
Best of luck
Barbie0 -
AmazingBarbie123 said:YES!
Hi,
My Mom is the one with Stage 3 colorectal cancer. She had a large tumor removed in August 2009 along with part of her colon. She now has a colostomy bag. At 91, wthe family decided not to tell her she had cancer. She wouldn't make it through chemo so we decided to let her live out the rest of her life peacefully.
Mainly what I wanted to tell you is that the colostomy isn't that bad. She can change the bag herself and has been doing very well. I never thought she would make it home from the hospital, but she's been home for about 10 months now and doing amazingly well. She uses the colostomy bags that are closed end and disposable. They are very easy to change and don't bother her at all.
Yes, I do believe in hope. And, yes, I do think it's OK to be happy. Try to take it a day at a time and be thankful for every day you have with him. That's how I cope.
Best of luck
Barbie
Your mom sounds amazing! 91 and manages all this by herself. What an awesome woman. Stories like hers really do give us reason to hope!
K0
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