Any other cancer survivers-fighters here?

[hotcoffee]

I found out October 1, 2014 that my colon cancer has spread. Now it's stage 4 with metastasis peri-umbilical mass. Doc says it's terminal.... months if I do nothing and maybe I can buy a couple of years with chemo and surgery followed by more chemo. It's still in my colon [according to the last colonoscopy].... may be in my stomach.... the surgeon wants me to have a tube put down my throat to look inside my stomach. It's also on a gland in my abdomen and there's a spot on my kidney [and on a separate note my kidney keeps producing boulders that slam me in the hospital for surgery sporadically].

I'm on chemo 5-FU every other week. I spend 3 days sleeping through the chemo, then two days fighting nausea, poopies, severe fatigue and chemo brain. The week in between chemo sessions I go to work to pay for the insurance so I can do it some more.

I refuse to poop into a bag.... flat out can not handle it. I had a surgery years ago and they sent me home with a catheter that I took out myself because I just could not handle it. I had a cast on my foot after a riding accident and I took that off after a few days because I had three kids to keep up with. I know I cannot handle pooping into a bag.... so that is a line I have drawn in cement.

The worst part.... I mean the absolute worse part of all this is what it's doing to my Gary. He has loved me since the day we met. I actually saw him in a dream before we met. We expected to grow old together. We're best friends and now I'm leaving him. My girls are all handling alright.... but they are still upset about it.

I plan to leave with grace. After all I believe I'll go to Heaven when I leave here.... I just hate to leave my Gary.... We've been together for 30 years.... we planned to be together for 30+ more....

I feel for those of you who are in the same boat.... it's horrible.... I'm sorry for you....

 

[kwillia]

I found out October 1, 2014 that my colon cancer has spread. Now it's stage 4 with metastasis peri-umbilical mass. Doc says it's terminal.... months if I do nothing and maybe I can buy a couple of years with chemo and surgery followed by more chemo. It's still in my colon [according to the last colonoscopy].... may be in my stomach.... the surgeon wants me to have a tube put down my throat to look inside my stomach. It's also on a gland in my abdomen and there's a spot on my kidney [and on a separate note my kidney keeps producing boulders that slam me in the hospital for surgery sporadically].

I'm on chemo 5-FU every other week. I spend 3 days sleeping through the chemo, then two days fighting nausea, poopies, severe fatigue and chemo brain. The week in between chemo sessions I go to work to pay for the insurance so I can do it some more.

I refuse to poop into a bag.... flat out can not handle it. I had a surgery years ago with a catheter that I took out myself because I just could not handle it. I had a cast on my foot after a riding accident and I took that off after a few days because I had three kids to keep up with. I know I cannot handle pooping into a bag.... so that is a line I have drawn in cement.

The worst part.... I mean the absolute worse part of all this is what it's doing to my Gary. He has loved me since the day we met. I actually saw him in a dream before we met. We expected to grow old together. We're best friends and now I'm leaving him. My girls are all handling alright.... but they are still upset about it.

I plan to leave with grace. After all I believe I'll go to Heaven when I leave here.... I just hate to leave my Gary.... We've been together for 30 years.... we planned to be together for 30+ more....

I feel for those of you who are in the same boat.... it's horrible.... I'm sorry for you....

It's so sad to hear your prognosis. I hope that the rest of the time you have is quality time with your family and friends and may you pass your strength to Gary. If it helps, I can assure you that I've seen very long term loving couples face the same thing you and Gary are facing and the remaining partner ends up being okay. You'll always be loved and never be replaced, but he will at some point realize that going on with his life and living it rather than spending it in darkness will be the best tribute to you he can give. Peace be with you both and your girls.

 

[Roman]

I found out October 1, 2014 that my colon cancer has spread. Now it's stage 4 with metastasis peri-umbilical mass. Doc says it's terminal.... months if I do nothing and maybe I can buy a couple of years with chemo and surgery followed by more chemo. It's still in my colon [according to the last colonoscopy].... may be in my stomach.... the surgeon wants me to have a tube put down my throat to look inside my stomach. It's also on a gland in my abdomen and there's a spot on my kidney [and on a separate note my kidney keeps producing boulders that slam me in the hospital for surgery sporadically].

I'm on chemo 5-FU every other week. I spend 3 days sleeping through the chemo, then two days fighting nausea, poopies, severe fatigue and chemo brain. The week in between chemo sessions I go to work to pay for the insurance so I can do it some more.

I refuse to poop into a bag.... flat out can not handle it. I had a surgery years ago and they sent me home with a catheter that I took out myself because I just could not handle it. I had a cast on my foot after a riding accident and I took that off after a few days because I had three kids to keep up with. I know I cannot handle pooping into a bag.... so that is a line I have drawn in cement.

The worst part.... I mean the absolute worse part of all this is what it's doing to my Gary. He has loved me since the day we met. I actually saw him in a dream before we met. We expected to grow old together. We're best friends and now I'm leaving him. My girls are all handling alright.... but they are still upset about it.

I plan to leave with grace. After all I believe I'll go to Heaven when I leave here.... I just hate to leave my Gary.... We've been together for 30 years.... we planned to be together for 30+ more....

I feel for those of you who are in the same boat.... it's horrible.... I'm sorry for you....

I have been thinking of you all day since reading your post. I hope that I don't come off as being an ass, but if you had the surgery, and another round of chemo that could change the course of the cancer, and maybe put it in remission? But you have a thing about the colostomy, and this is making you not want the surgery? I think I would treat it as aggressively as humanly possible, and if I had to wear the bag, I would do it. It is so much more discrete now. Why would you let a "bag" stand between you, and life? I hope you don't get angry with me, but I just don't understand. I probably didn't comprehend what you are trying to say. If that's the case, forgive me. Even though I don't know you, I care, and have enjoyed reading your posts. Right now, to me, it sounds like you are giving up. Please reconsider the surgery, especially if that is the reason you decided against it.

 

[hotcoffee]

I have been thinking of you all day since reading your post. I hope that I don't come off as being an ass, but if you had the surgery, and another round of chemo that could change the course of the cancer, and maybe put it in remission? But you have a thing about the colostomy, and this is making you not want the surgery? I think I would treat it as aggressively as humanly possible, and if I had to wear the bag, I would do it. It is so much more discrete now. Why would you let a "bag" stand between you, and life? I hope you don't get angry with me, but I just don't understand. I probably didn't comprehend what you are trying to say. If that's the case, forgive me. Even though I don't know you, I care, and have enjoyed reading your posts. Right now, to me, it sounds like you are giving up. Please reconsider the surgery, especially if that is the reason you decided against it.

I understand.... I have not ruled out the surgery.... as a matter of fact I'm going to talk to my oncologist about it again on Tuesday.

My prognosis is terminal. I can push it back some to spend some more time with my family.... but it's terminal. I have known people who have lost a family member after a long terminal illness. It breaks my heart to hear what the family goes through. I've heard so many of them saying they were relieved to see their loved one pass. It breaks their hearts to see their loved ones going through so much pain.

I'm in pain every day. I sleep through chemo infusion.... and then I'm so sick afterwards. My family checks up on me and I really want to lie to them and tell them I'm doing better.... but they know me so well.... they can hear it in my voice no matter how much I try to hide it. It's so hard on them.

And.... my family knows that I don't fear death. When I die I know I am going to Heaven...... and nothing on earth can compare to what my next adventure holds for me. They know how wonderful Heaven will be.... I've told them over and over again. I've thought about how selfish I am being to actually welcome death when it will break their hearts.... that's why I'm continuing with chemo, surgery, and chemo as long as it is doing good for me.

I'm not a financially rich woman. My health insurance will not pay for the Cancer Center.... as a matter of fact I have to discuss finances with Johns Hopkins because my insurance may only pay 80% of the bill. That bill doesn't go away even in bankruptcy and I will not live long enough to pay it off. I was homeless once.... with three children... it's a possibility if I'm not careful.

Thank you kwillia for bringing this up. I wasn't sure how I was going to broach the subject on the forums... and you opened the door.

 

[kwillia]

Thank you kwillia for bringing this up. I wasn't sure how I was going to broach the subject on the forums... and you opened the door.

We are all mortal and will face death at some point. Each death experience is unique and personal just like each and every life. As we contemplate what you and your family are going through we will mentally put ourselves in your shoes and so I'm sure you will get varied responses from all perspectives. Some will irritate and some will comfort. Based on your forum interactions I fully believe that you are the personality type that likes to reflect on opinions so I believe you will benefit from all responses and will embrace the discussion as you journey. I thank you for sharing such a personal and taboo subject with us. It will help us reflect as well.

 

[ArkRescue]

I'm not a financially rich woman. My health insurance will not pay for the Cancer Center.... as a matter of fact I have to discuss finances with Johns Hopkins because my insurance may only pay 80% of the bill. That bill doesn't go away even in bankruptcy and I will not live long enough to pay it off. I was homeless once.... with three children... it's a possibility if I'm not careful.

Thank you kwillia for bringing this up. I wasn't sure how I was going to broach the subject on the forums... and you opened the door.

If you are open to the assistance, there are a number of avenues that could help with the finances you may need to handle the unpaid portion of the bills. I totally understand the 20% unpaid by insurance as I am paying on 2 medical bills from last Spring that my insurance only paid 80% of.

I have seen a number of cash raising organizations online and maybe one can be started on your behalf. You should not have to limit your care due to finances, your life is worth so much more. I'd be willing to help start a fundraising event for you, but it would probably be easier for a close family member to do so on your behalf. I am sure there are MANY people who would be happy to donate to help with your medical bills. You may find it hard to open yourself up and LET people help you, but please do consider it .

 

[hotcoffee]

If you are open to the assistance, there are a number of avenues that could help with the finances you may need to handle the unpaid portion of the bills. I totally understand the 20% unpaid by insurance as I am paying on 2 medical bills from last Spring that my insurance only paid 80% of.

I have seen a number of cash raising organizations online and maybe one can be started on your behalf. You should not have to limit your care due to finances, your life is worth so much more. I'd be willing to help start a fundraising event for you, but it would probably be easier for a close family member to do so on your behalf. I am sure there are MANY people who would be happy to donate to help with your medical bills. You may find it hard to open yourself up and LET people help you, but please do consider it .

I really appreciate the offer.... There are a lot of people who want to fight and hang on as long as there is a breath in their body. I'd love to leave those funding resources for them.

If it turns out that they can save me... I might take you up on it... but according to what the doctors are telling me... my gut is full of cancer.... ;(

 

[doubtfull24]

I found out October 1, 2014 that my colon cancer has spread. Now it's stage 4 with metastasis peri-umbilical mass. Doc says it's terminal.... months if I do nothing and maybe I can buy a couple of years with chemo and surgery followed by more chemo. It's still in my colon [according to the last colonoscopy].... may be in my stomach.... the surgeon wants me to have a tube put down my throat to look inside my stomach. It's also on a gland in my abdomen and there's a spot on my kidney [and on a separate note my kidney keeps producing boulders that slam me in the hospital for surgery sporadically].

I'm on chemo 5-FU every other week. I spend 3 days sleeping through the chemo, then two days fighting nausea, poopies, severe fatigue and chemo brain. The week in between chemo sessions I go to work to pay for the insurance so I can do it some more.

I refuse to poop into a bag.... flat out can not handle it. I had a surgery years ago and they sent me home with a catheter that I took out myself because I just could not handle it. I had a cast on my foot after a riding accident and I took that off after a few days because I had three kids to keep up with. I know I cannot handle pooping into a bag.... so that is a line I have drawn in cement.

The worst part.... I mean the absolute worse part of all this is what it's doing to my Gary. He has loved me since the day we met. I actually saw him in a dream before we met. We expected to grow old together. We're best friends and now I'm leaving him. My girls are all handling alright.... but they are still upset about it.

I plan to leave with grace. After all I believe I'll go to Heaven when I leave here.... I just hate to leave my Gary.... We've been together for 30 years.... we planned to be together for 30+ more....

I feel for those of you who are in the same boat.... it's horrible.... I'm sorry for you....

 

[doubtfull24]

Sorry I haven't been on in a while.. fighting any form of cancer is a test of your strength...and patience. It's been three months since i started this post and just finished a month battle with the insurance company because they raised the co pay to something out of this world. A lot of paperwork between the manufacturer for co pay assistance and my doctors office and yesterday they approved a reduced cost. Not the best, but it's way better then what they originally tried to get. SO.. on that note, back on oral chemo and we're off to the races!!

Have to get better now, hubby bought me a jeep and it's my dream vehicle. Gonna have some fun now!

Roman: Thank you and (hugs)

 

[ArkRescue]

I really appreciate the offer.... There are a lot of people who want to fight and hang on as long as there is a breath in their body. I'd love to leave those funding resources for them.

If it turns out that they can save me... I might take you up on it... but according to what the doctors are telling me... my gut is full of cancer.... ;(

In 2006 my Dad found out he had lung cancer when he was already late stage. I had IM'd (remember Instant Messenger?) with him just about every day for many years. He had lost weight, had shortness of breath, but he wasn't the type to go to the Dr. By the time he went after his 1st symptoms (maybe 4 months), he was already terminal. They offered chemo but told him he'd be better off not doing it and just make the best of the time he had left. I got the call he was terminal and had 3-6 months left. I flew out to CA 2 weeks later to see him, he died a few weeks after that - he didn't even stay alive 3 months. Sounds odd to some, but I swear he comes by to see me sometimes. He always said he would.

My Dad did what he felt was best for him and you will do the what you feel is best for you. Hopefully everyone in your circle will let you go on your terms and be ok with it.

 

[ArkRescue]

Sorry I haven't been on in a while.. fighting any form of cancer is a test of your strength...and patience. It's been three months since i started this post and just finished a month battle with the insurance company because they raised the co pay to something out of this world. A lot of paperwork between the manufacturer for co pay assistance and my doctors office and yesterday they approved a reduced cost. Not the best, but it's way better then what they originally tried to get. SO.. on that note, back on oral chemo and we're off to the races!!

Have to get better now, hubby bought me a jeep and it's my dream vehicle. Gonna have some fun now!

Roman: Thank you and (hugs)

Well, how did the drive go?

 

[hotcoffee]

In 2006 my Dad found out he had lung cancer when he was already late stage. I had IM'd (remember Instant Messenger?) with him just about every day for many years. He had lost weight, had shortness of breath, but he wasn't the type to go to the Dr. By the time he went after his 1st symptoms (maybe 4 months), he was already terminal. They offered chemo but told him he'd be better off not doing it and just make the best of the time he had left. I got the call he was terminal and had 3-6 months left. I flew out to CA 2 weeks later to see him, he died a few weeks after that - he didn't even stay alive 3 months. Sounds odd to some, but I swear he comes by to see me sometimes. He always said he would.

My Dad did what he felt was best for him and you will do the what you feel is best for you. Hopefully everyone in your circle will let you go on your terms and be ok with it.

Yep... I remember IM....

Thanks.... My aunt lost her daughter when her daughter was 18 to a rare family ailment that no one knew about until that day. My aunt was devastated with grief until one day my cousin came back to visit her. According to my aunt... my cousin told her she was in no pain.... everything was peaceful and beautiful where she was.... my cousin told her that she knew that my aunt was hurting.... but then my aunt said that my cousin asked her this question.... "would you honestly ask me to come back, knowing that I would be in pain and sick for a long long time and then die anyway?"

My aunt said that seeing my cousin and hearing from her that she was alright comforted her. She did not want her to come back... but she missed her. John 14-16 says "I will ask the Father, and he will give you another advocate to help you and be with you forever— " . I'm counting on that for my family.