Here we go again (or maybe not?)
My wife thinks this is great news. In fact last night my 18 and 20 year old children said to me “I heard you got some good news”. Maybe it’s just me but six rounds of Folfox and 28 rounds of radiation for another long-shot at a cure does not sound like good news to me. My concern is I will lose my quality of life when I start this next course of treatment. Physically and mentally I’m completely beat and don’t think I can make it through treatment again. To say my wife is upset with my attitude would be quite an understatement. In fact as of this morning we are not talking and that never happens.
I turn to my friends on this forum to ask for any advice you can offer. I have close friends and a large supportive family but they have no idea what people in our situation are going through.
Thank you,
Joel
Comments
-
Thinking of You
Hi Joel!
Nice to see you posting again. I have been where you are with my dad. To quote the saying, "if I knew then, what I know now." My mom and I say this to each other often. You live and learn in this journey with cancer. My suggestion for you is to go with your gut feelings. You are the patient. You are the one who has to make the decisions, it is your cancer and your life. I agree with you, your quality of life will become non existant. I watched this with my dad. He did 6 weeks of chemo and radiation for his EC, he did pretty good, then the cancer went to his liver, we said it worked for the esophagus, lets just do it again for the liver....NOT...dad had 3 months of lots of suffering and pain.he was never able to move out of his recliner again. It was a true blessing for him and for us when he peacefully passed away that evening. If we had it to do over again, we would just treat him with pain management, and let nature take its course. That is us, this is you. Everyone is different, everyone responds differently. But, like you said, you are physically and mentally beat. So was my dad. I do not want to discourage you or your family, but you all know when Enough is Enough. And, so do the ongologists you talked to. Hope this helps instead of hurts. Lean on us anytime. Keep in touch. May God's peace be with you.
Tina in Va0 -
Joel must do what's right for JOEL! NOW!
Joel,
I can only say this truthfully and simply...
First off, I would immediately call out Hospice, and they can not only help you with so much if you do go with just palliative care, BUT they can ALSO counsel your wife, and family if needed, and make this a whole lot better for you all. Just my experience with Hospice so far. They have been a Godsend! And they also do pain management like NO oncologist or doctor can.
I am with you 110% just so you know...
YOU must do what is right for YOU. This is not the time to try and make your wife, or anyone else, happy or pleased with your choices. This is about YOU. This is a time to be SELFISH. Period.
I know it sounds awful, but you had better get this in your head and be okay with it if you are asking me, or the resentments and problems later will make this mornings not talking episode look like Leave It To Beaver or The Walton's having a fight. I have been here, done this, with my PARENTS and other family members!
As for the fighting with you wife, don't dance around the storm, you only end up following it. Be brave, and walk through the storm, and leave it behind you. They will move onm and get through this. You know that in your gut.
My wife, bless her insight, had the forethought to stay OUT of MY decision to receive chemo or radiation or not, and just do palliative care. At the time, I was hurt and didn't understand why my life partner would not help me with such a monumental decision. With hindsight, it was the bravest and best thing she could have ever done.
I must go for now, but I will post more again a bit later. Wanted to get this to you.
My heart and prayers are with you Joel. Do the right thing.
God bless,
-Eric0 -
Joelchemosmoker said:Joel must do what's right for JOEL! NOW!
Joel,
I can only say this truthfully and simply...
First off, I would immediately call out Hospice, and they can not only help you with so much if you do go with just palliative care, BUT they can ALSO counsel your wife, and family if needed, and make this a whole lot better for you all. Just my experience with Hospice so far. They have been a Godsend! And they also do pain management like NO oncologist or doctor can.
I am with you 110% just so you know...
YOU must do what is right for YOU. This is not the time to try and make your wife, or anyone else, happy or pleased with your choices. This is about YOU. This is a time to be SELFISH. Period.
I know it sounds awful, but you had better get this in your head and be okay with it if you are asking me, or the resentments and problems later will make this mornings not talking episode look like Leave It To Beaver or The Walton's having a fight. I have been here, done this, with my PARENTS and other family members!
As for the fighting with you wife, don't dance around the storm, you only end up following it. Be brave, and walk through the storm, and leave it behind you. They will move onm and get through this. You know that in your gut.
My wife, bless her insight, had the forethought to stay OUT of MY decision to receive chemo or radiation or not, and just do palliative care. At the time, I was hurt and didn't understand why my life partner would not help me with such a monumental decision. With hindsight, it was the bravest and best thing she could have ever done.
I must go for now, but I will post more again a bit later. Wanted to get this to you.
My heart and prayers are with you Joel. Do the right thing.
God bless,
-Eric
I am again so sorry to read about your situation. Lee was diagnosed out of the gate at stage ivb, so although I can sympathize, I can't imagine the disappointment of recurrence. I feel your pain, and I'm very sorry that your wife and you don't see treatment in the same way. When Lee decided "no more chemo" I was torn directly in-between. I hate the thought of giving up on our only hope, but at the same time hated just as much the thought of facing more side effects, misery and pain. ( with not much hope for any long term gains ) in the end, it was Lee's choice, and I stand by him. All of us caregivers here can undoubtedly understand your wife's reluctance to accept anything other than chemo, but I assure you, we also can see your point of view.
Everything Eric said is so true!!!! This is your choice, not one to be taken lightly, but also not one for others to make for you. Be well, thinking of you.
Chantal0 -
Joel,
This has to be your
Joel,
This has to be your decision. I'm sure your wife is scared and maybe afraid she will have to live with guilt the rest of her life, if she doesn't help you do everything possible to beat this cancer. She might be scared of what life will be without you. It’s hard to talk about those things. But I have found once we dive into those conversations, we both feel better. Then the fear doesn’t control us and we are able to take action. Take time to make your decision and then be committed to it! Second guessing will never help.
A little golf analogy. Paula Cramer and her caddie discuss her options on ever shot then make a decision and he stands behind her and helps her line up and as he steps away for her to make the shot he says "trust that". Joel, once you are committed to an action plan trust in it fully, others will see your heart is in the right place.
Take Care0 -
Much support here . .
Joel,
My heart bleeds for you, your wife and your family. I used to think there was nothing worse than the time surrounding initial diagnosis . . . . until we found out Kevin had mets to his liver. We were sucker punched - horribly. Since we found out that he had liver mets, we tried three different chemo regimens that Kevin did not respond to and he just completed SIR-spheres liver radiation. All in an attempt to gain a quality remission. He was only 36 at diagnosis and we have 2 children 7 & 11. We wanted to buy time at any expense, praying for that miracle or new development that would offer a cure to my husband. Just today, my husband said that he would seriously have to consider doing this radiation again if it becomes an option. His treatments have knocked him to his knees the past month and a half. His quality stinks. What is the use of buying time with your children when you can barely tolerate the stimulation of being with them. He spends a lot of time in the recliner in pain and or in discomfort. This is no way to spend your days . . .
The cross that we as caregivers carry and the cross that our loved ones carry is enormous, heavy, huge. We each carry them in different ways. I pray that your wife can come to terms with the reality/severity of your current condition. I understand her desire and pain all too well. I want more than anything for this to be a fight, a war, that we can win. I desperately want my husband to fight - cancer, not himself. Only recently, within the last few days, has he stopped fighting himself. We have been able to have quality of life discussions. Maybe with time and understanding, your wife will come to support whatever YOU choose to do with your treatment.
My husband and i have said that, recently, we are in our own version of living hell. Choose what is right for you, I think Lee said in one of his post that he began to fear the treatment more than death itself . . . maybe you can relate?
We all support you in the choice that is right for you.
Sincerely,
Whitney,
wife of Kevin
stage IVb0 -
Joel
My heart goes out to
Joel
My heart goes out to you and your family, this is one of those decisions that unfortunately only you can make, I understand your wife wanting to try anything in the hope of a miracle, I too want that miracle for my husband as well, it is only in the last couple of months that I have accepted that I can no longer sugar coat this disease, there will only be one outcome for my husband. What matters most is the distance in between, chemo, radiation can extend life but at what cost? I would rather my hubby had one good month than 3 spent in his bed not being able to enjoy his children, his life.
Mark is doing one more round of Chemo with the knowledge that if the treatment becomes too harsh then that will be that, nature will take its course.
This truly is a devastating disease that affects the whole family, but it is Mark's life and only he can make major decisions regarding what treatments he is willing to try, yes we discuss it the pro's and con's, ultimately it is up to him,, he knows he has my support and I hope that when he decides no more that I am strong enough to support him. I know everyone is different, just thought you might like to know what others in your position are doing. Just one thing did the Dr say cure or remission, there is a huge difference.
Go give your wife a big hug I'm sure she does want to talk to you, I will be thinking of you both and hoping that you stay well.
Ann0 -
Thinking about you.unknown said:This comment has been removed by the Moderator
Joel
I read your post earlier today, and I still don't know how to respond. I have been thinking about you and your family all day. You are facing the most difficult decision. The only thought I want to share now, is ~ I think your decision has to be made based on what you feel in your heart, not based on percentages. I will send a PM soon.
Take Care,
Lynn0 -
You and your wife are in my thoughts and prayersLynn_Paul said:Thinking about you.
Joel
I read your post earlier today, and I still don't know how to respond. I have been thinking about you and your family all day. You are facing the most difficult decision. The only thought I want to share now, is ~ I think your decision has to be made based on what you feel in your heart, not based on percentages. I will send a PM soon.
Take Care,
Lynn
Oh, Joel, my heart is breaking for you and your wife. As the wife of a Stage IV, I can completely relate to what your wife if feeling. And, of course, also to your feelings. I've been trying so hard to believe and truly accept in my heart that it IS my husband's cancer, but we've not had to face the issues you are. Maybe it would help if you just first hugged each other and had a good cry. Also, the social workers at the cancer center may have some good resources for a mediated family session to get and keep everyone talking.
(I can't tell you how much your message about Colby has helped me with my scan anxiety. I visualize him many times a day and it always brings me back to the present moment. Thank you so much for taking the time to post that with all you're going through!)
I'm praying for you and your family.
Angie0 -
So Sorry Joel
Hello Joel,
I can't believe how you must be feeling to make this post.
Like your wife, I am a caregiver and only she can know scared and hopeless she feels when your wonderful positive attitude is missing.
I am only three weeks into this journey with my husband and already he seems like an alien and I want him back.
I am sure you will make the right choice, but please make sure that you have explored every avenue first.
I wanted to share a real success story about Addenbrooks Hospital in Cambridge England. I say this not to give you false hope but because I know that they are pioneers in cancer treatments and perhaps your surgeon and oncologist could look into it for you.
Please check out this link.
http://www.dailymail.co.uk/health/article-2032252/Foxfire-cancer-treatment-sees-Brian-Brooks-tumours-killed-TWO-DAYS.html?ITO=1490
If it doesn't work try googling (Cancer cure/ Grandfather/ Addenbrooks)
May God love you and keep you Joel. You and your family are in my prayers.
Hugs
Marci x0 -
Thank youmardigras said:So Sorry Joel
Hello Joel,
I can't believe how you must be feeling to make this post.
Like your wife, I am a caregiver and only she can know scared and hopeless she feels when your wonderful positive attitude is missing.
I am only three weeks into this journey with my husband and already he seems like an alien and I want him back.
I am sure you will make the right choice, but please make sure that you have explored every avenue first.
I wanted to share a real success story about Addenbrooks Hospital in Cambridge England. I say this not to give you false hope but because I know that they are pioneers in cancer treatments and perhaps your surgeon and oncologist could look into it for you.
Please check out this link.
http://www.dailymail.co.uk/health/article-2032252/Foxfire-cancer-treatment-sees-Brian-Brooks-tumours-killed-TWO-DAYS.html?ITO=1490
If it doesn't work try googling (Cancer cure/ Grandfather/ Addenbrooks)
May God love you and keep you Joel. You and your family are in my prayers.
Hugs
Marci x
I wanted to thank each and every one of you for your help. I don’t talk to people in the real word about this site or what we talk about here because there is just no-way for them to relate. Tammy is not the type to join or even read a forum. It’s not that she chooses not to educate herself but she is very strong willed and tries to (and often does) will things to her wishes. She has a huge job as director of Finance & HR at the company she works for so maybe she feels she can direct this outcome too. But as we all know there is no willing away EC. So what I did last night was I opened this post and handed Tammy the laptop and asked her to read it for what it is worth. I told her to keep an open mind, these people may not be doctors or cancer researchers but live with EC every second of the day. Well I guess you guys must have stuck a nerve because instead of not talking this morning we spent an hour in bed just holding each other and crying. It felt good. We’ll meet with my radiation oncologist tomorrow and see what his take is on the treatment. We then leave for a week in the mountains of Maine to look at the foliage and just relax and during that time make some decisions.
I don’t use this word lightly but I love you people. Anyone that has had to endure what all of you have deserves a little love and mercy now. There is a line in a Bob Dylan song that says “Strange how people who suffer together have stronger connections than people who are most content”. That’s something all of us can relate to.
Thank you again,
Joel0 -
Beautiful Post!Joel C said:Thank you
I wanted to thank each and every one of you for your help. I don’t talk to people in the real word about this site or what we talk about here because there is just no-way for them to relate. Tammy is not the type to join or even read a forum. It’s not that she chooses not to educate herself but she is very strong willed and tries to (and often does) will things to her wishes. She has a huge job as director of Finance & HR at the company she works for so maybe she feels she can direct this outcome too. But as we all know there is no willing away EC. So what I did last night was I opened this post and handed Tammy the laptop and asked her to read it for what it is worth. I told her to keep an open mind, these people may not be doctors or cancer researchers but live with EC every second of the day. Well I guess you guys must have stuck a nerve because instead of not talking this morning we spent an hour in bed just holding each other and crying. It felt good. We’ll meet with my radiation oncologist tomorrow and see what his take is on the treatment. We then leave for a week in the mountains of Maine to look at the foliage and just relax and during that time make some decisions.
I don’t use this word lightly but I love you people. Anyone that has had to endure what all of you have deserves a little love and mercy now. There is a line in a Bob Dylan song that says “Strange how people who suffer together have stronger connections than people who are most content”. That’s something all of us can relate to.
Thank you again,
Joel
Beautiful post, Joel.
Thanks for sharing that experience.
I am so glad it went the way it did! THAT was a great idea.
I have done the EXACT same, and now Michelle reads here quite often, and it helped us allot as well.
I admire your courage and your wife's, too.
You two be strong and REALLY enjoy your time in the mountains.
You have certainly earned that.
May God bless you and keep your family strong.
I will be thinking about you and praying for you.
-Eric0 -
joel, I am very fortunate to
joel, I am very fortunate to be NED after three years. Even so, I have thought about recurrance and what I would do. At this point I don't know. I do know I had no quality life for a couple of years and that's not what I would want to do again. I've talked to my family and told them that if it did reccure to allow me to make my decisions. I feel now I wouldn't want any more treatment. If it was just to prolong life I know I wouldn't.I would opt for the quality time left. But I also know that if options were given me I might try for a while.
I'm praying for you and your families peace in excepting the right decision for you. Go and enjoy your trip . Hope it is beautiful. I live in Georgia and our leaves won't turn until late Oct.
Sandra0 -
Joel prayers are with yousandy1943 said:joel, I am very fortunate to
joel, I am very fortunate to be NED after three years. Even so, I have thought about recurrance and what I would do. At this point I don't know. I do know I had no quality life for a couple of years and that's not what I would want to do again. I've talked to my family and told them that if it did reccure to allow me to make my decisions. I feel now I wouldn't want any more treatment. If it was just to prolong life I know I wouldn't.I would opt for the quality time left. But I also know that if options were given me I might try for a while.
I'm praying for you and your families peace in excepting the right decision for you. Go and enjoy your trip . Hope it is beautiful. I live in Georgia and our leaves won't turn until late Oct.
Sandra
Joel,
Your post is beautiful, sad but so great that you had your wife read what everyone here is saying that you have to live with the effects of treatment and you have to see whether you can endure it for maybe not a great outcome. Glad you are getting away, so glad that your wife read the posts and sounds like you are making good decisions. My thoughts and prayers are with you and your family, everyone you love goes along on this crazy ride called EC. many hugs and many prayers for you all,
Donna700 -
This comment has been removed by the ModeratorJoel C said:Thank you
I wanted to thank each and every one of you for your help. I don’t talk to people in the real word about this site or what we talk about here because there is just no-way for them to relate. Tammy is not the type to join or even read a forum. It’s not that she chooses not to educate herself but she is very strong willed and tries to (and often does) will things to her wishes. She has a huge job as director of Finance & HR at the company she works for so maybe she feels she can direct this outcome too. But as we all know there is no willing away EC. So what I did last night was I opened this post and handed Tammy the laptop and asked her to read it for what it is worth. I told her to keep an open mind, these people may not be doctors or cancer researchers but live with EC every second of the day. Well I guess you guys must have stuck a nerve because instead of not talking this morning we spent an hour in bed just holding each other and crying. It felt good. We’ll meet with my radiation oncologist tomorrow and see what his take is on the treatment. We then leave for a week in the mountains of Maine to look at the foliage and just relax and during that time make some decisions.
I don’t use this word lightly but I love you people. Anyone that has had to endure what all of you have deserves a little love and mercy now. There is a line in a Bob Dylan song that says “Strange how people who suffer together have stronger connections than people who are most content”. That’s something all of us can relate to.
Thank you again,
Joel0 -
Enjoy Main Joel and enjoy each otherJoel C said:Thank you
I wanted to thank each and every one of you for your help. I don’t talk to people in the real word about this site or what we talk about here because there is just no-way for them to relate. Tammy is not the type to join or even read a forum. It’s not that she chooses not to educate herself but she is very strong willed and tries to (and often does) will things to her wishes. She has a huge job as director of Finance & HR at the company she works for so maybe she feels she can direct this outcome too. But as we all know there is no willing away EC. So what I did last night was I opened this post and handed Tammy the laptop and asked her to read it for what it is worth. I told her to keep an open mind, these people may not be doctors or cancer researchers but live with EC every second of the day. Well I guess you guys must have stuck a nerve because instead of not talking this morning we spent an hour in bed just holding each other and crying. It felt good. We’ll meet with my radiation oncologist tomorrow and see what his take is on the treatment. We then leave for a week in the mountains of Maine to look at the foliage and just relax and during that time make some decisions.
I don’t use this word lightly but I love you people. Anyone that has had to endure what all of you have deserves a little love and mercy now. There is a line in a Bob Dylan song that says “Strange how people who suffer together have stronger connections than people who are most content”. That’s something all of us can relate to.
Thank you again,
Joel
Have a wonderful holiday Joel. I hope it brings you peace and love.
Good luck with the Onco tomorrow and thank you for sharing.
Each of us will have battles and it's posts like yours that help us
to understand and to realise that we are not alone. When we feel that
we are being weak, selfish, or afraid we can come in here and know
that it is quite normal to feel this way sometimes.
God Bless you and your family Joel.
You are in my prayers.
Hugs Marci x0 -
Hi JoelJoel C said:Thank you
I wanted to thank each and every one of you for your help. I don’t talk to people in the real word about this site or what we talk about here because there is just no-way for them to relate. Tammy is not the type to join or even read a forum. It’s not that she chooses not to educate herself but she is very strong willed and tries to (and often does) will things to her wishes. She has a huge job as director of Finance & HR at the company she works for so maybe she feels she can direct this outcome too. But as we all know there is no willing away EC. So what I did last night was I opened this post and handed Tammy the laptop and asked her to read it for what it is worth. I told her to keep an open mind, these people may not be doctors or cancer researchers but live with EC every second of the day. Well I guess you guys must have stuck a nerve because instead of not talking this morning we spent an hour in bed just holding each other and crying. It felt good. We’ll meet with my radiation oncologist tomorrow and see what his take is on the treatment. We then leave for a week in the mountains of Maine to look at the foliage and just relax and during that time make some decisions.
I don’t use this word lightly but I love you people. Anyone that has had to endure what all of you have deserves a little love and mercy now. There is a line in a Bob Dylan song that says “Strange how people who suffer together have stronger connections than people who are most content”. That’s something all of us can relate to.
Thank you again,
Joel
What an emotional time for you and your family.
I think many of us hold out hope that modern medicine can fix everything. Unfortunately, we here know that all too well.
William posted some really good links on helping to make that decision. And it is yours to make. The effects of chemo are cumulative. I'd always hoped that my Steve wouldn't become a professional patient instead of living out his life when he was diagnosed as Stage IVb last September. He tried the chemo, 6 sessions of FOLFOX and then two sessions of Irinotecan/Platinol. It had only a marginal effect, staving off the progression for a while but no great shrinkage. The second session of the Irino/Platinol he couldn't even do the Platinol as his poor kidneys were showing too much wear and tear. The chemo does things to the other organs, hence the blood tests every time to see what's been going on inside the body from the chemo. Thankfully, he said "enough" and enjoyed some good quality time and let his body do what it was going to do.
You and your family are in my heart as you travel this road together. Enjoy your trip in Maine,
Jo-Ann0 -
Dear Joel
I hope you're enjoying the weekend.
I had a similar recurrence, discovered last February. I was also given the option of Folfox. At that time, I was doing really well, not having gone through the surgery that you had. I had just returned from 3 weeks in the Caribbean, and did not want to spend the rest of the spring and summer in bed like I had in 2010. I only had 2 chemo agents (Cisplatin and 5FU) first time around and it nearly killed me.
But my main point is that of all the 4 oncologists I consulted with last spring, none of them said anything about "cure". And none of them recommended it as a first option. The best that could be said about going through the Folfox is that it would give me clear scans. Well, clear scans are great -- it's what we all pray for every time isn't it? But it doesn't mean cure.
I opted for a less onerous course of chemo (yes, there are other options... it's not all or nothing). A single agent, that has allowed me to enjoy most of my spring and summer and now going into the fall. I have had 3 clean scans since February.
Folfox is still a option for me. I know every situation is different. But you should explore all options before you decide, and ask your onco's this, but I was told that choosing one chemo option over another, or even chosing to do nothing --- which was a viable option advocated by at least one of my onco's, does not foreclose any options in the future.
Your choice may change as your physical condition improves. I would definitely inquire as to why the Folfox needs to be administered now, before you even have an idea how aggressive this recurrence is. I understand you've only had one CT scan.
Anyway, these decisions are not easy, but keep in mind that you do have choices.
Keeping you in my thoughts,
Lu0 -
And Thank YouJoel C said:Thank you
I wanted to thank each and every one of you for your help. I don’t talk to people in the real word about this site or what we talk about here because there is just no-way for them to relate. Tammy is not the type to join or even read a forum. It’s not that she chooses not to educate herself but she is very strong willed and tries to (and often does) will things to her wishes. She has a huge job as director of Finance & HR at the company she works for so maybe she feels she can direct this outcome too. But as we all know there is no willing away EC. So what I did last night was I opened this post and handed Tammy the laptop and asked her to read it for what it is worth. I told her to keep an open mind, these people may not be doctors or cancer researchers but live with EC every second of the day. Well I guess you guys must have stuck a nerve because instead of not talking this morning we spent an hour in bed just holding each other and crying. It felt good. We’ll meet with my radiation oncologist tomorrow and see what his take is on the treatment. We then leave for a week in the mountains of Maine to look at the foliage and just relax and during that time make some decisions.
I don’t use this word lightly but I love you people. Anyone that has had to endure what all of you have deserves a little love and mercy now. There is a line in a Bob Dylan song that says “Strange how people who suffer together have stronger connections than people who are most content”. That’s something all of us can relate to.
Thank you again,
Joel
Hi Joel Tammy and family
Thanks for your post. You gave me chills of happiness when I read how you spent an hour in bed holding, and crying with each other. That is so important. Communication is a key part. Going to the mountains will be wonderful. Enjoy yourselves. Thinking of Bob Dylan made me think of Randy Travis, he put out a Christian song called Dr. Jesus. It is a must hear. You can go to youtube to listen to it. So happy we could help you. We love you too believe me! Keep in touch.
Tina in Va0
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