My Husband My World - by YROSS

JanJan63

Don't beat yourself up about

Don't beat yourself up about not encouraging him to go sooner. My symptoms were masked by my IBS and even when they wanted to do the colonoscopy I didn't want to do it because I felt fine. Now I look back and think how much easier it would have been to have one and have a polyp nipped out than what I've been through. I was actually scheduled to have a colonoscopy two years before my diagnosis but didn't go. Stupid, stupid, stupid. Hindsight is 20/20 as they say.

Thinking of you and hoping you can find strength through this. And I'm hoping for the best for your husband. I sent you a message. Maybe we can chat through there.

Hugs,

Jan

LindaK.

YROSS said:

Thank you

for such a wonderful response, you made me feel special....no one sees what we go through as spouses and caregivers breadwinner etc....he had such a small lung spot it grew due to the rigors Mayo did this to him the day of his infusion they did not know what was wrong we ended up in the hospital with a lung that was surrounded by maliginant fluid, this I know is a side effect from chemo they drained 3 liters worth and then they had surgery to insert a Pleurex I had to drain it daily for 4 weeks what a set back!  I know the rigors set the cancer in full speed and the work it took for him to breathe normal again.  If this was not bad enough his next round it happened again.  My husband has been through so much and after journaling I realized just how bad it has been from the emergency stat removal of the tumor 7 inches went with along with lymph nodes and appendix, he thought it was appendixcites I think back and how I wish It was.  I received a phone call during a board meeting and my life has been in a talespin since 10/17 the worst day of my life. Thanks for the y-90 101 no one ever mentioned this.  Not sure why the liver has the most.  Thank you for your time and kindness.  Hospice came today  I can only succumb if he must, as long as he is comfortable at home that would be my wish up to him...I sent a request for another opinion, Cancer treatment Center of America will conduct an evaluation.  When I asked him intially he said no when Hospice came he realized that once the drip starts he will no longer have his wits to have quality of life or a real conversation.  Still have hope for some reason, not sure why.  I also suffer from guilt because since child birth of my second born at the age of 35 I had irregular bleeding, because of this I had a colonospy every 5 years to be on the safe side. it was a basic fichers which was great news.  I remember asking him at 45 to have one and he said he would at 50.  50 came and i forgot about it   55 hit and I said why have you not been screened?  He said he would and 2 years later as he was golfing he had a horrific pain in his right side....I should have been a jerk until he did it.  I still blame myself for not standing my ground.  This lesson learned will I know shorten my life.  13 year olds are awesome!! I hope they spend time daily with your husband and that he enjoys every second with them.  My boys are 30 and 24 when he told them they looked like they were young boys again.  My heart has been shattered since.  Good luck at your next visit.Take Care 

So Sorry

Hello, I come on here occasionally and when I read your post, I felt I had something to share that might help you.  My husband passed away 4 years and 4 months ago.  He was diagnosed in December 2012 with stage 2 colon cancer.  He had emergency surgery to remove 2 feet of his colon.  He followed up (not willingly) with 6 months (12 treatments) of Folfox.  He had a lazy incompetent oncolcogist and that included most of his staff too.  Within a few months, he was having trouble again.  He went back to all his doctors, had another colonoscopy, no scans, oncologist said he didn't need them.  In January, 2014 he ended up back in the hospital, another emergency surgery to remove a new large tumor in his small intestine.  After lazy incompetent (yes I'm still very angry) oncologist finally came to see my husband in the hospital (where he was for 21 days) and oncologist's office is attached to this smallish hospital.  He said very accusatorily "Well, now you're stage IV"  Talk about dropping a bomb!  As soon as he got out of that darn hospital we switched to a larger, more hopeful and much more caring hospital in our city.  He started FOLFIRI the next day and a PET scan was ordered that week.  His cancer had also spread to his lymph nodes distant from the colon.  It was like day vs. night compared to the other dumpy place he went prior.  Things did not go his way, one issue after another, several more hospitalizations and in September, 2014, they told us the dreaded "There's nothing more we can do"  It is the most devastating news when we've been through all we've been through as caretakers.  My husband passed away at a wonder hospice facility 6 weeks later.

My advice to you - take off work starting now, take a leave of absence, FMLA (if you have it) or without pay.  I wish I had taken more time off instead of running myself ragged back and forth to work.  I also did not expect such a fast decline and was probably still in some sort of shock myself.  Also, looking back at his medical records, our daughter (who is a nurse) and I both believe his cancer was more aggressive and fast growing than they ever told us.  He had been having colonocopies every few years since he turned 50.  He had several polyps removed but none were ever cancerous (or that we were told) so for him to grow a large tumor in under 2 years, I believe he had a very aggressive cancer.  Also, looking back, what did we know about where to go and who to trust?  We followed this doctor's suggestions and treatment.  I wish we hadn't but you can't go back and change things.   Even if we had gone to the larger cancer center, would things have turned out any different?  We'll never know.  My husband came home on home hospice care for about 4 weeks and then I had to take him to the facility where he was for 11 days. I could not care for him at home anymore because he was falling and we couldn't get his pain under control.  Hospice was a relief for me also, it let me be "the wife" and not the caretaker.

I cannot say if some other cancer center or doctor can prolong your husband's life, no one really can, but you should ask him what he wants to do or maybe you already have.  It's very hard to watch our husbands be ill and in so much pain.  I really hate cancer.  You have both been through so much in a short time.  Sometimes we just have to deal with what life gives us.

Peace,  Linda

Butt

Your May want to go to a local hospice and interview them.

Trubrit

LindaK. said:

So Sorry

Hello, I come on here occasionally and when I read your post, I felt I had something to share that might help you.  My husband passed away 4 years and 4 months ago.  He was diagnosed in December 2012 with stage 2 colon cancer.  He had emergency surgery to remove 2 feet of his colon.  He followed up (not willingly) with 6 months (12 treatments) of Folfox.  He had a lazy incompetent oncolcogist and that included most of his staff too.  Within a few months, he was having trouble again.  He went back to all his doctors, had another colonoscopy, no scans, oncologist said he didn't need them.  In January, 2014 he ended up back in the hospital, another emergency surgery to remove a new large tumor in his small intestine.  After lazy incompetent (yes I'm still very angry) oncologist finally came to see my husband in the hospital (where he was for 21 days) and oncologist's office is attached to this smallish hospital.  He said very accusatorily "Well, now you're stage IV"  Talk about dropping a bomb!  As soon as he got out of that darn hospital we switched to a larger, more hopeful and much more caring hospital in our city.  He started FOLFIRI the next day and a PET scan was ordered that week.  His cancer had also spread to his lymph nodes distant from the colon.  It was like day vs. night compared to the other dumpy place he went prior.  Things did not go his way, one issue after another, several more hospitalizations and in September, 2014, they told us the dreaded "There's nothing more we can do"  It is the most devastating news when we've been through all we've been through as caretakers.  My husband passed away at a wonder hospice facility 6 weeks later.

My advice to you - take off work starting now, take a leave of absence, FMLA (if you have it) or without pay.  I wish I had taken more time off instead of running myself ragged back and forth to work.  I also did not expect such a fast decline and was probably still in some sort of shock myself.  Also, looking back at his medical records, our daughter (who is a nurse) and I both believe his cancer was more aggressive and fast growing than they ever told us.  He had been having colonocopies every few years since he turned 50.  He had several polyps removed but none were ever cancerous (or that we were told) so for him to grow a large tumor in under 2 years, I believe he had a very aggressive cancer.  Also, looking back, what did we know about where to go and who to trust?  We followed this doctor's suggestions and treatment.  I wish we hadn't but you can't go back and change things.   Even if we had gone to the larger cancer center, would things have turned out any different?  We'll never know.  My husband came home on home hospice care for about 4 weeks and then I had to take him to the facility where he was for 11 days. I could not care for him at home anymore because he was falling and we couldn't get his pain under control.  Hospice was a relief for me also, it let me be "the wife" and not the caretaker.

I cannot say if some other cancer center or doctor can prolong your husband's life, no one really can, but you should ask him what he wants to do or maybe you already have.  It's very hard to watch our husbands be ill and in so much pain.  I really hate cancer.  You have both been through so much in a short time.  Sometimes we just have to deal with what life gives us.

Peace,  Linda

Hello Linda

It is always good to see you pop back to the forum. 

I can't believe it has been over 4 years since you lost your love. 

I do so hope life is treating you well. 

Tru

myAZmountain

YROSS

So sorry to hear your husband has a such a rough time. HIs story touches me as his cancer journey is so similar to mine...never had "time: for colonoscopy at 50 , pain in right side at age 58--cancer in cecumileum, omentum  thought was appendicitis etc.....laproscpic surgery to remove all and have lung mets remaining. I am praying he can regain some strength and energy and have pain releived so he can spend more time with you. Is he at Mayo in Phoenix by any chance? 

LindaK.

Doing well Sue

Thank you Sue.  I can't believe it will be 5 years soon either, time does not fly when you're not having fun, ha ha.  I am doing fine.  Both my parents have passed in the last 2 years and my nephew and his wife lost their full term much wanted and loved baby boy 5 weeks after my mom passed.  Losing the baby seemed worse in many ways than losing my husband or my parents.  Such an innocent life lost with no explanation, such extreme sadness.

Life goes on for the rest of us and I'm looking forward to retiring in about 3-1/2 years! I hate to wish my life away but I'm tired of working and we all know life is short so I want to enjoy some time in my retirement doing things I want to do.  I enjoy seeing your love of the outdoors on Facebook, looks like a beautiful place you live.

Linda

YROSS

myAZmountain said:

YROSS

So sorry to hear your husband has a such a rough time. HIs story touches me as his cancer journey is so similar to mine...never had "time: for colonoscopy at 50 , pain in right side at age 58--cancer in cecumileum, omentum  thought was appendicitis etc.....laproscpic surgery to remove all and have lung mets remaining. I am praying he can regain some strength and energy and have pain releived so he can spend more time with you. Is he at Mayo in Phoenix by any chance? 

Mayo Phoenix

is who treated him unsuccessfully, you are just a number there I have not met anyone who cares.  It was such a horrible expereince.  Don't let the brand fool you I was unimpressed with them from the very start.  My husband wanted to stay there.  I wanted to RUN!!! How are you doing today my AZmountain?  He is only 57 years old Family have been visiting him to say goodbye.  I have not given up yet.

YROSS

JanJan63 said:

Don't beat yourself up about

Don't beat yourself up about not encouraging him to go sooner. My symptoms were masked by my IBS and even when they wanted to do the colonoscopy I didn't want to do it because I felt fine. Now I look back and think how much easier it would have been to have one and have a polyp nipped out than what I've been through. I was actually scheduled to have a colonoscopy two years before my diagnosis but didn't go. Stupid, stupid, stupid. Hindsight is 20/20 as they say.

Thinking of you and hoping you can find strength through this. And I'm hoping for the best for your husband. I sent you a message. Maybe we can chat through there.

Hugs,

Jan

Thank you Jan, appreciate

Thank you Jan, appreciate your feedback, how are you doing?  He also had IBS they say his cancer was not genetic when then what caused it, is there a way I can be sure it is not genetic?  I have 2 sons and need to know what i can do and how early they are safe to perform this procedure.  you sent me a message where?  in the chatroom?  sorry new at this.  Thank you

YROSS

Butt said:

Your May want to go to a local hospice and interview them.

Interview hospice for?

not sure what you mean?  

YROSS

LindaK. said:

So Sorry

Hello, I come on here occasionally and when I read your post, I felt I had something to share that might help you.  My husband passed away 4 years and 4 months ago.  He was diagnosed in December 2012 with stage 2 colon cancer.  He had emergency surgery to remove 2 feet of his colon.  He followed up (not willingly) with 6 months (12 treatments) of Folfox.  He had a lazy incompetent oncolcogist and that included most of his staff too.  Within a few months, he was having trouble again.  He went back to all his doctors, had another colonoscopy, no scans, oncologist said he didn't need them.  In January, 2014 he ended up back in the hospital, another emergency surgery to remove a new large tumor in his small intestine.  After lazy incompetent (yes I'm still very angry) oncologist finally came to see my husband in the hospital (where he was for 21 days) and oncologist's office is attached to this smallish hospital.  He said very accusatorily "Well, now you're stage IV"  Talk about dropping a bomb!  As soon as he got out of that darn hospital we switched to a larger, more hopeful and much more caring hospital in our city.  He started FOLFIRI the next day and a PET scan was ordered that week.  His cancer had also spread to his lymph nodes distant from the colon.  It was like day vs. night compared to the other dumpy place he went prior.  Things did not go his way, one issue after another, several more hospitalizations and in September, 2014, they told us the dreaded "There's nothing more we can do"  It is the most devastating news when we've been through all we've been through as caretakers.  My husband passed away at a wonder hospice facility 6 weeks later.

My advice to you - take off work starting now, take a leave of absence, FMLA (if you have it) or without pay.  I wish I had taken more time off instead of running myself ragged back and forth to work.  I also did not expect such a fast decline and was probably still in some sort of shock myself.  Also, looking back at his medical records, our daughter (who is a nurse) and I both believe his cancer was more aggressive and fast growing than they ever told us.  He had been having colonocopies every few years since he turned 50.  He had several polyps removed but none were ever cancerous (or that we were told) so for him to grow a large tumor in under 2 years, I believe he had a very aggressive cancer.  Also, looking back, what did we know about where to go and who to trust?  We followed this doctor's suggestions and treatment.  I wish we hadn't but you can't go back and change things.   Even if we had gone to the larger cancer center, would things have turned out any different?  We'll never know.  My husband came home on home hospice care for about 4 weeks and then I had to take him to the facility where he was for 11 days. I could not care for him at home anymore because he was falling and we couldn't get his pain under control.  Hospice was a relief for me also, it let me be "the wife" and not the caretaker.

I cannot say if some other cancer center or doctor can prolong your husband's life, no one really can, but you should ask him what he wants to do or maybe you already have.  It's very hard to watch our husbands be ill and in so much pain.  I really hate cancer.  You have both been through so much in a short time.  Sometimes we just have to deal with what life gives us.

Peace,  Linda

Thank you Linda

Sounds very familiar we have only been 18 months into this had emergency surgery removed 6.5 colon to remove tumor. From the very beginning he has had one problem after another beginning with a defective port.  The only way we knew this was he had a blood clot that was the size of a lemon on his forearm I noticed it even after justhaving a colonoscopy myself drugged an all, I called a LYFT to rush us to the hospital.  What a set back!  removed and inserted a new one on the other side, after being put on a blood thinner to avoid future clot.  After 6 months he was taken off of it. I beleive with all the setbacks that is what has reduced his timeline.  Chemo creates all of these problems they are listed in the side affects. He wants to go for yet another opinion our appointment is on Wednesday, if the treatment recommendation is the same he will be done with treatment.  The last line they are offering is ironitican avaistin and Xeloda.  He is prone to having diarreaha and was told this will for sure be a side affect for him based on the history.  He said he is not interested on sitting on a pot for the rest of his life, because the Dr. told him that with this line of therapy it would only give him 2 months.  Says it does not make sense. I hate this ugly disease.  Americans are so intelligent I cannot beleive with all the funding to find the cure how this is so out of reach I will never understand. I want to be the wife...been everything for 18 months I wish we could just have our life back, it was a wonderful life. My heart aches I cannot take antidepressents so I will have to deal with allof this stone cold sober   How did you survive losing him if you don;t mind me asking.  Thanks for your story it is helpful.  Take care.  

myAZmountain

YROSS said:

Mayo Phoenix

is who treated him unsuccessfully, you are just a number there I have not met anyone who cares.  It was such a horrible expereince.  Don't let the brand fool you I was unimpressed with them from the very start.  My husband wanted to stay there.  I wanted to RUN!!! How are you doing today my AZmountain?  He is only 57 years old Family have been visiting him to say goodbye.  I have not given up yet.

Mayo Phoenix

As soon as you said you got treated horribly at Mayo I knew it was at Phoenix....I went there last fall for a second opinion and the Oncologist was the nastiest young man I have met in this journey.We currently live in a very rural and not affluent area in western Arizona and I am sure he looked at my address and assumed alot of things....He essentially told me to measure for my coffin and don't plan anything a year out---And yet i only have one small met in lung left after pretty successful results from Chemo. Treated me like a throwaway and got a few insults in about my treatment plan from my small hospital here, even though our oncologist here spent years and years working for MD Anderson and is wonderful. I go to doctors in Northern Virginia as I send part of the year there with my daughters and the docs there are wonderfully optomistic! It seems so damn unfair that not only do you have to deal with the reality of having cancer but you have to worry about are you getting the right treatment at the right time by the right clinician--that one misstep can be the difference almost. I am 59 and hope and pray your husband gets better --don't give up!!!

JanJan63

YROSS, check the area on the

YROSS, check the area on the page where there's a list of all the posts and there will be some small print near the top saying that you have a new message or something like that. It's not very noticeable. I've missed messages several times because it doesn't really stand out at all.

Your kids can use that non invasive test to start. I've also heard it's not genetic, I've heard that it was likely to happen because of the IBS but then I heard that's not true, I have no idea. I did read recently that they say that about 75% of cancer cases have no discernible reason for happening. 

Jan

YROSS

myAZmountain said:

Mayo Phoenix

As soon as you said you got treated horribly at Mayo I knew it was at Phoenix....I went there last fall for a second opinion and the Oncologist was the nastiest young man I have met in this journey.We currently live in a very rural and not affluent area in western Arizona and I am sure he looked at my address and assumed alot of things....He essentially told me to measure for my coffin and don't plan anything a year out---And yet i only have one small met in lung left after pretty successful results from Chemo. Treated me like a throwaway and got a few insults in about my treatment plan from my small hospital here, even though our oncologist here spent years and years working for MD Anderson and is wonderful. I go to doctors in Northern Virginia as I send part of the year there with my daughters and the docs there are wonderfully optomistic! It seems so damn unfair that not only do you have to deal with the reality of having cancer but you have to worry about are you getting the right treatment at the right time by the right clinician--that one misstep can be the difference almost. I am 59 and hope and pray your husband gets better --don't give up!!!

Mayo Nightmare in Phoenix

Yes you are so right.....most likely the same young man wish we could give names so no one ever sees him again.  I still cannot beleieve my husband ever trusted him, he was so arrogant with nothing backing it up...I wish I would never ever agreed to Mayo.  I feel like the misstep will cost him his life and I know i will never forgive myself for allowing it.  I should have put my foot down.  He actually told my husband that he was knocking on heavens door....OMG I was appauled he should not be praticing. I will be reporting him to the BBB and Mayo as well.  I cannot just let my husbands situation go by as if nothing has happened.  I am hoping my husband sees next month Godwilling. He also insulted prior oncologist as well.  Sounds like the same person Karma has its way of finding people like this.  It is so wrong.  I am happy you have survived Wish i could move to North Virgina, take care and thankyou for your feedback.  Blessings to you.

YROSS

I will check

Thank you for your help!

parramos17

Get a second opinion  My

Get a second opinion  My husband was told to go home and just live the time he has .Called Dana Farber in Boston getting treatment the last 11 months feel there is hope always and keep fighting forward try every route  Call Dana Farber

myAZmountain

YROSS said:

Mayo Nightmare in Phoenix

Yes you are so right.....most likely the same young man wish we could give names so no one ever sees him again.  I still cannot beleieve my husband ever trusted him, he was so arrogant with nothing backing it up...I wish I would never ever agreed to Mayo.  I feel like the misstep will cost him his life and I know i will never forgive myself for allowing it.  I should have put my foot down.  He actually told my husband that he was knocking on heavens door....OMG I was appauled he should not be praticing. I will be reporting him to the BBB and Mayo as well.  I cannot just let my husbands situation go by as if nothing has happened.  I am hoping my husband sees next month Godwilling. He also insulted prior oncologist as well.  Sounds like the same person Karma has its way of finding people like this.  It is so wrong.  I am happy you have survived Wish i could move to North Virgina, take care and thankyou for your feedback.  Blessings to you.

Smug jerk

Has to be same guy. He told me I was in the "December of my disease".  I told my family as we were leaving his office I was going to come back in 20 years to this smug little creep and tell him to  shove it.  Mayo Phoenix is a not even in the same league as Rochester.  My heart breaks that your husband suffered there, I only spent 30 minutes there thank goodness. Will be praying your husband turns the corner and starts responding positively to whatever treatment he is on....

Butt

Typing from my cell, so there would be typos.....Your can t blame yourself.  Period. I requested the first colonoscopy at 4o because I have a family history but not Lynch. They found a small polyp but biopsy was negative. No symptoms. The doc had hard time to lift it because it was sessile polyp. Wanted to see me again in a few months. The polyp was there. She suggested a colon resection. Again, biopsy is negative. Scans showed a benign cyst and liver hemangioma that is benign. No symptoms. Finally, got a colon resection that went great a few month later. No rush. Boom. The pathology report caught cancer as they thought initially was stage 3 but scans showed whole blown stage 4. I even wasn t worrying about that pathology report. I knew it wasn t cancer, docs knew it, too. Wrong! The tumor was under the polyp. I remember my brilliant surgeon walked in a room for my follow up post surgery appointment. She always was very well composed. She looked visibly nervous. I didn’t make any deal if that. You know may be a bad day. I always addressed her by first name and she did the same. She suddenly looked at me  addressed me by an official title Doctor using my last name and told me I have cancer. I saw her hands shaking when she was giving me the pathology report. I lost it. She wanted to know if I want to read the report myself or I want to read it by myself. I was Not capable to either read it or let her read it. When she finally started to read it I could not in any way understand it. I was asking for oxygen because I couldn t breath normally. I was sweating.  That was the day that changed my life....Butt.