Yeah it's Sal,I really need your input, please!

Wife of patient 50378

unknown said:

This comment has been removed by the Moderator

Sherri,
I have been investigating behind the scenes. MD Anderson in Houston, My insurance is changing in Jan. checking to make sure of acceptance. The premiums and co-pays are sky rocketing next year .. go figure. Dr. Luketich may be out of reach for us (too far). I have to keep my job..insurance. I have been saving up my PTO time for the....??? surgery. Also looking at the Mayo Clinic in Denver.

Sherri it really scares me knowing that he is on the cusp. You have been through alot, I respect your experience and knowledge. Thank you for posting, your another one who's perspective is always on target.
Sal

Gatoraid

Don't Give Up
I was also T3M1N0 with a good sized tumor and 2 positive lymph nodes. I had the bright idea that I could skip chem and radiation and go right to surgery and was not listening to reason. My wife kept after me and when we visited the Oncologist, she forced the conversations that eventually made me listen. When asking what the best chance for my survival was, it eventually became clear that chem with radiation followed by surgery was my best chance.

Don't give up on him. If he respects his Oncologists opinions, you have to initiate the conversations at the doctor visits that will help him see that the recommended approach is his best bet to beat this thing.

Don't let his denial drive you crazy (easier said than done). Keep after him and have the Oncologist convince him of the path he must take.

Keep your chin up. He has to face up to this thing sooner or later. Obviously time is not on his side. I wish you the best with making him see what must be done.

Jim

suezque1214

Wife of patient 50378 said:

Suezue,
Yes, I am experiencing the same thing. I wondered if the Dr. are just going along with husband (his denial) until Rad/chemo is over? My husband will not join a support site either, it is his choice, I respect that. He disscusses his cancer treatments, his weight gain (he has gained over ten pounds since starting treatment)and difficulty swallowing every day. I just listen and show compassion. He does not like to touch on any topics other than Rad/chemo. only the now.

It sounds like your husband is doing well, Where did he have his surgery ? and What type of surgery.....if you do not mind me asking?

Suezue, thanks for chiming in! I appreciate your willingness to share your experience.
Sal

treatment
Dear Wife,
He was treated with cisplatin and 5FU with concurrent radiation (28 Tx). finished last Chemo in the first week of August. Had Minimally invasive esophagectomy done on august 31st, by Dr. Brian Meyers at Barnes Jewish in St. Louis Missouri. He is very good, and was very open to MIE. At that time the j-tube was also placed. Thank god they found no other cancer cells in pathogy following surgery. Dr. Meyers emphasized that it was important to take a minimum of 15 to 20 lymph nodes.
Post surg was a little rocky, my husband had a heart attack 8 years ago, so cardiac status was a big concern. following surgery he had several episodes of tachycardia, (brought the nurses running!) On the 5th day postsurg they did a barium swallow ,but the contrast medium gave him rampant diarrhea. Also started his j-tube feeding at that time. He did not tolerate ENSURE. I would encourage anyone with j-tube feeding starting to ask for a pre-digested feeding ( he is on Peptamen 1.5).
Home 13 days post surg with home health services. Rehospitalized 2 weeks later with failure to thrive, couldn't get enough fluids in. Since he has done fairly well with fluids and is beginning to eat more. He says he's a little stronger every day. He has been left with a cough and episodic nausea/gagging. anything else I can tell you just ask.

megmacmd

Wife of patient 50378 said:

Well... maybe I am the Dummy
During his radiation yesterday, he stated to his Radiation Onco, I do not want the surgey! Doc, said after you finish up these treatments we can monitor your body, if the cancer pops up again, we will treat with more Chemo/radiation.

From what I read this cancer can become resistant to chemo... he will soon be a stage 4.

I will post every now and again. Perhaps, this experience (post) can help other EC victims...WHAT NOT TO DO...This is a real nasty disease one should take every effort to save their life...ask questions.. be proactive. I will post updates in the hopes that if any other ec victim Stage III is living in denial, they can read about this experience the outcome, and the reality of this disease.

So now what.. I watch my husband slowly die,... as the cancer will come back and probably in force. I will keep you guys updated.
Sal

Denial
Denialcan sometime be a good thingI was toldI was stage3 but with nodes in pelvis and lungs not a surgical candidate but made me a stage4 I did 11 rounds of chemo shrank some but the chemo gave me lots of side effects I feel better now off the chemo I eat and go to work and have decided no more chemo would rather take what comes wathced my momdad and sister die of cancer not much fun my mom had the best experience stopped chemo and lived 3 years longer than they expected playing bridge and croquette great pain control only the last weeks were not so great but stil good pain control and sharp as a tack until the end.Each of us must make our own decisions and deal as best we can I find denial to be great as long as Im feeling fairly normal and can go about my usual life Will deal with the end stages as they arise.Strange approach as a doctor myself but sometimes the body knows best and the doctors can only use the archaic tools at there disposal which is basically poisoning the good with the bad and maybe our body can do a better job by itself given the fact this is a very tricky and insidious diseaes cant predict which turn it will take.They gave me 6 months in March and Im still working and eating and living life for now. Can lead a horse to waterbut cantmake him drink. Being a caretaker is probably the most frustrating job in the world Im my own caretaker for better or worse and will ultimately go to live with my daughter but we are on the same page no feeding tubes or excessive interventions
just good pain control.Wish I could give you great words of wisdom but itis his body and he should call the shots even though that may seem unreasonable toyou. His last bit of control. Lost the love of my life soul mate wing man best friend 40 years 3 years ago and it was heartrending but got through it with the strenght of family and belief there is something better
waiting for us.Scream if you feellike it it will all work out as it should and you willbe his rock to guide him through he is sooolucky to have you by his side I wish you the best in your journey and hope you have the support of faith and family with you Enjoy Thanksgiving I intend to as if it were my last Meg McIntyre stage4 and living life

megmacmd

Wife of patient 50378 said:

Well... maybe I am the Dummy
During his radiation yesterday, he stated to his Radiation Onco, I do not want the surgey! Doc, said after you finish up these treatments we can monitor your body, if the cancer pops up again, we will treat with more Chemo/radiation.

From what I read this cancer can become resistant to chemo... he will soon be a stage 4.

I will post every now and again. Perhaps, this experience (post) can help other EC victims...WHAT NOT TO DO...This is a real nasty disease one should take every effort to save their life...ask questions.. be proactive. I will post updates in the hopes that if any other ec victim Stage III is living in denial, they can read about this experience the outcome, and the reality of this disease.

So now what.. I watch my husband slowly die,... as the cancer will come back and probably in force. I will keep you guys updated.
Sal

Denial
Denialcan sometime be a good thingI was toldI was stage3 but with nodes in pelvis and lungs not a surgical candidate but made me a stage4 I did 11 rounds of chemo shrank some but the chemo gave me lots of side effects I feel better now off the chemo I eat and go to work and have decided no more chemo would rather take what comes wathced my momdad and sister die of cancer not much fun my mom had the best experience stopped chemo and lived 3 years longer than they expected playing bridge and croquette great pain control only the last weeks were not so great but stil good pain control and sharp as a tack until the end.Each of us must make our own decisions and deal as best we can I find denial to be great as long as Im feeling fairly normal and can go about my usual life Will deal with the end stages as they arise.Strange approach as a doctor myself but sometimes the body knows best and the doctors can only use the archaic tools at there disposal which is basically poisoning the good with the bad and maybe our body can do a better job by itself given the fact this is a very tricky and insidious diseaes cant predict which turn it will take.They gave me 6 months in March and Im still working and eating and living life for now. Can lead a horse to waterbut cantmake him drink. Being a caretaker is probably the most frustrating job in the world Im my own caretaker for better or worse and will ultimately go to live with my daughter but we are on the same page no feeding tubes or excessive interventions
just good pain control.Wish I could give you great words of wisdom but itis his body and he should call the shots even though that may seem unreasonable toyou. His last bit of control. Lost the love of my life soul mate wing man best friend 40 years 3 years ago and it was heartrending but got through it with the strenght of family and belief there is something better
waiting for us.Scream if you feellike it it will all work out as it should and you willbe his rock to guide him through he is sooolucky to have you by his side I wish you the best in your journey and hope you have the support of faith and family with you Enjoy Thanksgiving I intend to as if it were my last Meg McIntyre stage4 and living life

megmacmd

Wife of patient 50378 said:

Well... maybe I am the Dummy
During his radiation yesterday, he stated to his Radiation Onco, I do not want the surgey! Doc, said after you finish up these treatments we can monitor your body, if the cancer pops up again, we will treat with more Chemo/radiation.

From what I read this cancer can become resistant to chemo... he will soon be a stage 4.

I will post every now and again. Perhaps, this experience (post) can help other EC victims...WHAT NOT TO DO...This is a real nasty disease one should take every effort to save their life...ask questions.. be proactive. I will post updates in the hopes that if any other ec victim Stage III is living in denial, they can read about this experience the outcome, and the reality of this disease.

So now what.. I watch my husband slowly die,... as the cancer will come back and probably in force. I will keep you guys updated.
Sal

Denial
Denialcan sometime be a good thingI was toldI was stage3 but with nodes in pelvis and lungs not a surgical candidate but made me a stage4 I did 11 rounds of chemo shrank some but the chemo gave me lots of side effects I feel better now off the chemo I eat and go to work and have decided no more chemo would rather take what comes wathced my momdad and sister die of cancer not much fun my mom had the best experience stopped chemo and lived 3 years longer than they expected playing bridge and croquette great pain control only the last weeks were not so great but stil good pain control and sharp as a tack until the end.Each of us must make our own decisions and deal as best we can I find denial to be great as long as Im feeling fairly normal and can go about my usual life Will deal with the end stages as they arise.Strange approach as a doctor myself but sometimes the body knows best and the doctors can only use the archaic tools at there disposal which is basically poisoning the good with the bad and maybe our body can do a better job by itself given the fact this is a very tricky and insidious diseaes cant predict which turn it will take.They gave me 6 months in March and Im still working and eating and living life for now. Can lead a horse to waterbut cantmake him drink. Being a caretaker is probably the most frustrating job in the world Im my own caretaker for better or worse and will ultimately go to live with my daughter but we are on the same page no feeding tubes or excessive interventions
just good pain control.Wish I could give you great words of wisdom but itis his body and he should call the shots even though that may seem unreasonable toyou. His last bit of control. Lost the love of my life soul mate wing man best friend 40 years 3 years ago and it was heartrending but got through it with the strenght of family and belief there is something better
waiting for us.Scream if you feellike it it will all work out as it should and you willbe his rock to guide him through he is sooolucky to have you by his side I wish you the best in your journey and hope you have the support of faith and family with you Enjoy Thanksgiving I intend to as if it were my last Meg McIntyre stage4 and living life

megmacmd

Wife of patient 50378 said:

Well... maybe I am the Dummy
During his radiation yesterday, he stated to his Radiation Onco, I do not want the surgey! Doc, said after you finish up these treatments we can monitor your body, if the cancer pops up again, we will treat with more Chemo/radiation.

From what I read this cancer can become resistant to chemo... he will soon be a stage 4.

I will post every now and again. Perhaps, this experience (post) can help other EC victims...WHAT NOT TO DO...This is a real nasty disease one should take every effort to save their life...ask questions.. be proactive. I will post updates in the hopes that if any other ec victim Stage III is living in denial, they can read about this experience the outcome, and the reality of this disease.

So now what.. I watch my husband slowly die,... as the cancer will come back and probably in force. I will keep you guys updated.
Sal

Denial
Denialcan sometime be a good thingI was toldI was stage3 but with nodes in pelvis and lungs not a surgical candidate but made me a stage4 I did 11 rounds of chemo shrank some but the chemo gave me lots of side effects I feel better now off the chemo I eat and go to work and have decided no more chemo would rather take what comes wathced my momdad and sister die of cancer not much fun my mom had the best experience stopped chemo and lived 3 years longer than they expected playing bridge and croquette great pain control only the last weeks were not so great but stil good pain control and sharp as a tack until the end.Each of us must make our own decisions and deal as best we can I find denial to be great as long as Im feeling fairly normal and can go about my usual life Will deal with the end stages as they arise.Strange approach as a doctor myself but sometimes the body knows best and the doctors can only use the archaic tools at there disposal which is basically poisoning the good with the bad and maybe our body can do a better job by itself given the fact this is a very tricky and insidious diseaes cant predict which turn it will take.They gave me 6 months in March and Im still working and eating and living life for now. Can lead a horse to waterbut cantmake him drink. Being a caretaker is probably the most frustrating job in the world Im my own caretaker for better or worse and will ultimately go to live with my daughter but we are on the same page no feeding tubes or excessive interventions
just good pain control.Wish I could give you great words of wisdom but itis his body and he should call the shots even though that may seem unreasonable toyou. His last bit of control. Lost the love of my life soul mate wing man best friend 40 years 3 years ago and it was heartrending but got through it with the strenght of family and belief there is something better
waiting for us.Scream if you feellike it it will all work out as it should and you willbe his rock to guide him through he is sooolucky to have you by his side I wish you the best in your journey and hope you have the support of faith and family with you Enjoy Thanksgiving I intend to as if it were my last Meg McIntyre stage4 and living life

megmacmd

Wife of patient 50378 said:

Well... maybe I am the Dummy
During his radiation yesterday, he stated to his Radiation Onco, I do not want the surgey! Doc, said after you finish up these treatments we can monitor your body, if the cancer pops up again, we will treat with more Chemo/radiation.

From what I read this cancer can become resistant to chemo... he will soon be a stage 4.

I will post every now and again. Perhaps, this experience (post) can help other EC victims...WHAT NOT TO DO...This is a real nasty disease one should take every effort to save their life...ask questions.. be proactive. I will post updates in the hopes that if any other ec victim Stage III is living in denial, they can read about this experience the outcome, and the reality of this disease.

So now what.. I watch my husband slowly die,... as the cancer will come back and probably in force. I will keep you guys updated.
Sal

Denial
Denialcan sometime be a good thingI was toldI was stage3 but with nodes in pelvis and lungs not a surgical candidate but made me a stage4 I did 11 rounds of chemo shrank some but the chemo gave me lots of side effects I feel better now off the chemo I eat and go to work and have decided no more chemo would rather take what comes wathced my momdad and sister die of cancer not much fun my mom had the best experience stopped chemo and lived 3 years longer than they expected playing bridge and croquette great pain control only the last weeks were not so great but stil good pain control and sharp as a tack until the end.Each of us must make our own decisions and deal as best we can I find denial to be great as long as Im feeling fairly normal and can go about my usual life Will deal with the end stages as they arise.Strange approach as a doctor myself but sometimes the body knows best and the doctors can only use the archaic tools at there disposal which is basically poisoning the good with the bad and maybe our body can do a better job by itself given the fact this is a very tricky and insidious diseaes cant predict which turn it will take.They gave me 6 months in March and Im still working and eating and living life for now. Can lead a horse to waterbut cantmake him drink. Being a caretaker is probably the most frustrating job in the world Im my own caretaker for better or worse and will ultimately go to live with my daughter but we are on the same page no feeding tubes or excessive interventions
just good pain control.Wish I could give you great words of wisdom but itis his body and he should call the shots even though that may seem unreasonable toyou. His last bit of control. Lost the love of my life soul mate wing man best friend 40 years 3 years ago and it was heartrending but got through it with the strenght of family and belief there is something better
waiting for us.Scream if you feellike it it will all work out as it should and you willbe his rock to guide him through he is sooolucky to have you by his side I wish you the best in your journey and hope you have the support of faith and family with you Enjoy Thanksgiving I intend to as if it were my last Meg McIntyre stage4 and living life

megmacmd

Wife of patient 50378 said:

Well... maybe I am the Dummy
During his radiation yesterday, he stated to his Radiation Onco, I do not want the surgey! Doc, said after you finish up these treatments we can monitor your body, if the cancer pops up again, we will treat with more Chemo/radiation.

From what I read this cancer can become resistant to chemo... he will soon be a stage 4.

I will post every now and again. Perhaps, this experience (post) can help other EC victims...WHAT NOT TO DO...This is a real nasty disease one should take every effort to save their life...ask questions.. be proactive. I will post updates in the hopes that if any other ec victim Stage III is living in denial, they can read about this experience the outcome, and the reality of this disease.

So now what.. I watch my husband slowly die,... as the cancer will come back and probably in force. I will keep you guys updated.
Sal

Denial
Denialcan sometime be a good thingI was toldI was stage3 but with nodes in pelvis and lungs not a surgical candidate but made me a stage4 I did 11 rounds of chemo shrank some but the chemo gave me lots of side effects I feel better now off the chemo I eat and go to work and have decided no more chemo would rather take what comes wathced my momdad and sister die of cancer not much fun my mom had the best experience stopped chemo and lived 3 years longer than they expected playing bridge and croquette great pain control only the last weeks were not so great but stil good pain control and sharp as a tack until the end.Each of us must make our own decisions and deal as best we can I find denial to be great as long as Im feeling fairly normal and can go about my usual life Will deal with the end stages as they arise.Strange approach as a doctor myself but sometimes the body knows best and the doctors can only use the archaic tools at there disposal which is basically poisoning the good with the bad and maybe our body can do a better job by itself given the fact this is a very tricky and insidious diseaes cant predict which turn it will take.They gave me 6 months in March and Im still working and eating and living life for now. Can lead a horse to waterbut cantmake him drink. Being a caretaker is probably the most frustrating job in the world Im my own caretaker for better or worse and will ultimately go to live with my daughter but we are on the same page no feeding tubes or excessive interventions
just good pain control.Wish I could give you great words of wisdom but itis his body and he should call the shots even though that may seem unreasonable toyou. His last bit of control. Lost the love of my life soul mate wing man best friend 40 years 3 years ago and it was heartrending but got through it with the strenght of family and belief there is something better
waiting for us.Scream if you feellike it it will all work out as it should and you willbe his rock to guide him through he is sooolucky to have you by his side I wish you the best in your journey and hope you have the support of faith and family with you Enjoy Thanksgiving I intend to as if it were my last Meg McIntyre stage4 and living life

ritawaite13

Hi Sal
A friend posted on Greg's CaringBridge site the following quote: You never know how strong you can be until strong is the only choice you have. I just love that and it's so true!! You are very strong Sal! As a former caregiver myself, I praise myself over and over again for all I did and tried to do for my husband. Lift your head up - you are VERY strong and yes, you will survive this. I'm so glad that you have all of us to vent to so that you're kind and loving to him. That's exactly what he needs and you will never regret treating him with all the kindness you can muster.
Hugs to you, girl!
Rita

dodger21

ritawaite13 said:

Hi Sal
A friend posted on Greg's CaringBridge site the following quote: You never know how strong you can be until strong is the only choice you have. I just love that and it's so true!! You are very strong Sal! As a former caregiver myself, I praise myself over and over again for all I did and tried to do for my husband. Lift your head up - you are VERY strong and yes, you will survive this. I'm so glad that you have all of us to vent to so that you're kind and loving to him. That's exactly what he needs and you will never regret treating him with all the kindness you can muster.
Hugs to you, girl!
Rita

Quote
Absolutely love that quote Rita