Hi... Sal here.. I'm back

Wife of patient 50378

I would like to thank each and every one of you for your support. Your kind words + the good the bad and ugly are appreciated.

The night before last I lost it. I decided that I did not need an appointment with my husband to discuss his life or death situation. I went in guns blazing, no tip toeing around the subject. The discussion was heated. He asked me to “stop” and for “god sake this is my medical team” please support me.

But then………
Out of denial! He finally, finally came to the emotion of anger. (This is good!)
Last night, I arrived home from work; he was out on the patio. He looked at me and said “I am so angry why this is happening to me, I am so frustrated, angry, livid ……..
What did I do wrong? Why do I have this? All test results indicate that all of my other organs are perfect “unremarkable”. Then he stated “I am starting to question my medical team, perhaps they are NOT providing me with ALL information I require to fight this.

The point that finally came across.. he must become proactive, research, ask questions and become informed. What ever his decisions, I will support,… as long as they are informed.

Thanks for Listening (or rather reading)
Sal

LilChemoSmoker

Victory at last!
Sal,
This is incredible news! I am so elated for you! You didn't give up and you pressed forward, and no matter the means you made it there! Now you two can join forces and proceed to a place of informed decisions! Goo on you girl! Peaceful times are coming, now that you two can communicate through the process! I continue to pray for you and your husband to make it to the senior class!

Regards,
Michelle

sandy1943

Sal, I'm so happy for his
Sal, I'm so happy for his decision, and the anger that is making him move forward.. Even if second opinions and research prove his doctors are right, you'll have the peace of mind knowing all that could be done, has.
Good luck. My prayers are with you, Sandra

LeeinLondon

LilChemoSmoker said:

Victory at last!
Sal,
This is incredible news! I am so elated for you! You didn't give up and you pressed forward, and no matter the means you made it there! Now you two can join forces and proceed to a place of informed decisions! Goo on you girl! Peaceful times are coming, now that you two can communicate through the process! I continue to pray for you and your husband to make it to the senior class!

Regards,
Michelle

Great to hear
How wonderful that you and your husband are now officially a team! He's going through an incredible amount of emotional turmoil (and so are you) and you'll find strength in exploring together and working towards the best possible outcome. You will both likely find yourselves in moments of extreme emotion over the coming months, but what else would you expect? Keep lots of notebooks, especially medical contact information, a calendar for appointments, and a cell phone if you don't have one.

So onward and upward to you both. Don't forget to laugh (no matter how inappropriate), and don't forget to hold hands every day.

best,

Lee in London

BMGky

sandy1943 said:

Sal, I'm so happy for his
Sal, I'm so happy for his decision, and the anger that is making him move forward.. Even if second opinions and research prove his doctors are right, you'll have the peace of mind knowing all that could be done, has.
Good luck. My prayers are with you, Sandra

I agree with these posts. A
I agree with these posts. A second opinion may not tell you what you want to hear; however, you will know you are making the best decision you can under these difficult choices. Time is of the essence. Appropriate staging and PET scan information is vital. Now that your husband is seeing that he needs more information before he makes his treatment or non-treatment choice, please move into high gear.

I'm not familiar with your area but surely there are some cancer centers that regularly deal with esophageal cancer in the region. Hope someone will come on board and offer suggestions. We are all pulling for you and your husband to get the information you need in a timely fashion.

Your husband's anger is quite understandable. Let's hope it motivates him to appropriate action. I admire your courage and strength to pursue information. No one knows what is to be the outcome, but whatever his decision, he and you will know you gave it your all.

Best wishes!! BMG

Wpturner05

Tears . .
This brought tears to my eyes - I am so happy that he has come around and wants to fight. My husband would give anything to have the opportunity to fight. Sometimes fear and anger come out sideways, but at least it came out and he can now possibly move forward.

Good luck in your days ahead as you decide the next steps.

Sincerely,
Whitney
wife of Kevin
stage IVb

Ginny_B

Wow! Must have been a really
Wow! Must have been a really emotional time! Whew! Now move forward together!

Wife of patient 50378

LilChemoSmoker said:

Victory at last!
Sal,
This is incredible news! I am so elated for you! You didn't give up and you pressed forward, and no matter the means you made it there! Now you two can join forces and proceed to a place of informed decisions! Goo on you girl! Peaceful times are coming, now that you two can communicate through the process! I continue to pray for you and your husband to make it to the senior class!

Regards,
Michelle

Thanks!
Thanks Michelle, this fourm has provided much help. I did so much research at first dx, and of course I came across pre 2004 stats (Grim). Then eventually current information and proceedures ect.. Then, I came across this message board. I plan to provide him with some of these post to read. But first.. he needs to be receptive. Almost there!

Don't sweat the small things!
Sal

chemosmoker

WAY TO GO SAL!!!!
WAY TO GO SAL!!!

YAY!!

NOW just get him on here and reading.
He could learn So much So fast and he might feel SO much more informed and safer, too.
I KNOW I do.

God bless you for your nerve!
Keep up the GOOD fight.
I am very proud of BOTH of you. Him for coming out of his denial (it takes all of us our own process with this beast) and you for caring enough to risk his anger and caring enough to go for it. You shouldn't NEED an appointment with your own husband, but even WE have had to take this approach before in the past! Whatever it takes!

As Michelle said it so well, GOO ON YOU, GIRL! (lol)
-Eric

LilChemoSmoker

Wife of patient 50378 said:

Thanks!
Thanks Michelle, this fourm has provided much help. I did so much research at first dx, and of course I came across pre 2004 stats (Grim). Then eventually current information and proceedures ect.. Then, I came across this message board. I plan to provide him with some of these post to read. But first.. he needs to be receptive. Almost there!

Don't sweat the small things!
Sal

I have a feeling....
Sal,

I have a feeling that he will be here before long. It sounds like the barrier is coming down and progress is happening. That is the BEST possible outcome thus far. I also feel that once here, not only will he gain knowledge but support that he so desperately needs from others that are in the same boat as him. Just being able to realize you are not alone can be a profound moment, and I shall now pray for that for him. You are in my heart girl!

-Michelle

Wife of patient 50378

LeeinLondon said:

Great to hear
How wonderful that you and your husband are now officially a team! He's going through an incredible amount of emotional turmoil (and so are you) and you'll find strength in exploring together and working towards the best possible outcome. You will both likely find yourselves in moments of extreme emotion over the coming months, but what else would you expect? Keep lots of notebooks, especially medical contact information, a calendar for appointments, and a cell phone if you don't have one.

So onward and upward to you both. Don't forget to laugh (no matter how inappropriate), and don't forget to hold hands every day.

best,

Lee in London

Lee in London
Lee in london...thank you for your kind words of support. My heart and prayers are with you. I hope you laugh so loud & hard today that all of London can hear you.

When first dx I purchased a small expandable briefcase, labeled appropriately, I created appointment sheets, med sheets,every Dr.’s contact #’s email addresses including their nurse’s info. and notebook, already have cell phones 3, basket for meds/next to clip board & medsheets, nice new warm comforter, a warm throw for the livingrm, new slippers & sweats.

I am also stocked up with love,hope,perseverance,and a testy bit of impatience.

Yes, this beasty disease is a emotional rollercoaster ride.

Stay strong Lee In London!
Sal

Wife of patient 50378

LilChemoSmoker said:

I have a feeling....
Sal,

I have a feeling that he will be here before long. It sounds like the barrier is coming down and progress is happening. That is the BEST possible outcome thus far. I also feel that once here, not only will he gain knowledge but support that he so desperately needs from others that are in the same boat as him. Just being able to realize you are not alone can be a profound moment, and I shall now pray for that for him. You are in my heart girl!

-Michelle

I agree
I agree, he is past denial & head in the sand if you will. I can see where he feels alone even when I am holding his hand. Support from someone who is in the same shoes... absoultely HUGE. He'll get there!

Michelle....you guys have a wonderful day!
Sal

Wife of patient 50378

sandy1943 said:

Sal, I'm so happy for his
Sal, I'm so happy for his decision, and the anger that is making him move forward.. Even if second opinions and research prove his doctors are right, you'll have the peace of mind knowing all that could be done, has.
Good luck. My prayers are with you, Sandra

Sandra...
Sandra.. thank you so kindly for your support..you are such a champion! Yes.. peace of mind.

Sal

Wife of patient 50378

sandy1943 said:

Sal, I'm so happy for his
Sal, I'm so happy for his decision, and the anger that is making him move forward.. Even if second opinions and research prove his doctors are right, you'll have the peace of mind knowing all that could be done, has.
Good luck. My prayers are with you, Sandra

Sandra...
Sandra.. thank you so kindly for your support..you are such a champion! Yes.. peace of mind.

Sal

Wife of patient 50378

BMGky said:

I agree with these posts. A
I agree with these posts. A second opinion may not tell you what you want to hear; however, you will know you are making the best decision you can under these difficult choices. Time is of the essence. Appropriate staging and PET scan information is vital. Now that your husband is seeing that he needs more information before he makes his treatment or non-treatment choice, please move into high gear.

I'm not familiar with your area but surely there are some cancer centers that regularly deal with esophageal cancer in the region. Hope someone will come on board and offer suggestions. We are all pulling for you and your husband to get the information you need in a timely fashion.

Your husband's anger is quite understandable. Let's hope it motivates him to appropriate action. I admire your courage and strength to pursue information. No one knows what is to be the outcome, but whatever his decision, he and you will know you gave it your all.

Best wishes!! BMG

I am researching
Hey BMGky, Yes I am researching for the best possible center near NM. & checking insurance coverage ect.. Thank you so much for your encouragement.

Sal

Wife of patient 50378

Wpturner05 said:

Tears . .
This brought tears to my eyes - I am so happy that he has come around and wants to fight. My husband would give anything to have the opportunity to fight. Sometimes fear and anger come out sideways, but at least it came out and he can now possibly move forward.

Good luck in your days ahead as you decide the next steps.

Sincerely,
Whitney
wife of Kevin
stage IVb

Oh,,,,,,, Whitney ... BIG HUGS to you.
Yes, he does not realize how fortunate his situation is compared to some. That is something I have not brought up and I certainly will Whitney. Great Point!

My prayers are with you and Kevin.

Wife of patient 50378

chemosmoker said:

WAY TO GO SAL!!!!
WAY TO GO SAL!!!

YAY!!

NOW just get him on here and reading.
He could learn So much So fast and he might feel SO much more informed and safer, too.
I KNOW I do.

God bless you for your nerve!
Keep up the GOOD fight.
I am very proud of BOTH of you. Him for coming out of his denial (it takes all of us our own process with this beast) and you for caring enough to risk his anger and caring enough to go for it. You shouldn't NEED an appointment with your own husband, but even WE have had to take this approach before in the past! Whatever it takes!

As Michelle said it so well, GOO ON YOU, GIRL! (lol)
-Eric

I certainly
I certianly hope he choses to particpate on this board.. but his choice. I plan to provide him copies of posts from here.

You and Michelle are so amazing and supportive to the participants on this fourm. Thank you!

Via Con Dios Mi Amigos!

Sal

Wife of patient 50378

Ginny_B said:

Wow! Must have been a really
Wow! Must have been a really emotional time! Whew! Now move forward together!

Yes
Ginny yes, the ship is changing course full speed ahead. I am trying to navigate through the stormy weather & waters, seaching for the right course of direction. The waves look huge, very dark & scary.

Thank you for your support!

Sal

Heeran

Hi Sal
I've been reading through your posts and comments from members. I'm so glad to hear that your husband is questioning and demanding better answers and treatment plan. Please keep us informed if you decide to speak with some other doctors.

Daisylin

Wife of patient 50378 said:

I certainly
I certianly hope he choses to particpate on this board.. but his choice. I plan to provide him copies of posts from here.

You and Michelle are so amazing and supportive to the participants on this fourm. Thank you!

Via Con Dios Mi Amigos!

Sal

Anger
We can all relate to the anger, I'm sure. At least I know that I can..... Why does this happen to good, great, wonderful people? If this disease only targeted bad people, none of us would be here!!! I have been so angry, so many times at this disease, I've had many a temper tantrum, believe me! Also, lots of days where all I want to do is tuck myself in bed, cry and sleep for a week straight. I can almost guarantee that every single person here has had days like that. It's a hard, tiring and demanding beast that we are battling here!

I am so glad that your husband is at least facing the beast, perhaps once he comes to terms with the illness, and treatment options, he can at least make the best, most informed decisions. You are so right to stand by his choices, no matter what, but also so very right to insist that he educate himself. I'm sure the shock of it, and likely being terrified of the less than wonderful options that he has been given has made him just want to put his head in the sand, and pretend it does not exist. I'm sure we've all had moments like that. The important thing is that we shake the sand off, pick our selves up and get to work!

Hoping the communication gates remain open, and whatever he decides, all the best!
Chantal
wife of Lee, ivb

Wife of patient 50378

Daisylin said:

Anger
We can all relate to the anger, I'm sure. At least I know that I can..... Why does this happen to good, great, wonderful people? If this disease only targeted bad people, none of us would be here!!! I have been so angry, so many times at this disease, I've had many a temper tantrum, believe me! Also, lots of days where all I want to do is tuck myself in bed, cry and sleep for a week straight. I can almost guarantee that every single person here has had days like that. It's a hard, tiring and demanding beast that we are battling here!

I am so glad that your husband is at least facing the beast, perhaps once he comes to terms with the illness, and treatment options, he can at least make the best, most informed decisions. You are so right to stand by his choices, no matter what, but also so very right to insist that he educate himself. I'm sure the shock of it, and likely being terrified of the less than wonderful options that he has been given has made him just want to put his head in the sand, and pretend it does not exist. I'm sure we've all had moments like that. The important thing is that we shake the sand off, pick our selves up and get to work!

Hoping the communication gates remain open, and whatever he decides, all the best!
Chantal
wife of Lee, ivb

Hi there chantal!
I pray I have your spirit and energy throughout this battle, you are truely an inspirattion Ms.Chantal. Take care of yourself.
Sal