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

Wife of patient...
Posts: 129
Joined: Oct 2011

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's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

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

LeeinLondon's picture
LeeinLondon
Posts: 108
Joined: Aug 2011

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

Wife of patient...
Posts: 129
Joined: Oct 2011

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...
Posts: 129
Joined: Oct 2011

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

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

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...
Posts: 129
Joined: Oct 2011

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

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

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

BMGky
Posts: 666
Joined: May 2010

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

Wife of patient...
Posts: 129
Joined: Oct 2011

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...
Posts: 129
Joined: Oct 2011

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

Sal

Wife of patient...
Posts: 129
Joined: Oct 2011

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

Sal

Wpturner05
Posts: 120
Joined: Aug 2011

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

Wife of patient...
Posts: 129
Joined: Oct 2011

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.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

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

Wife of patient...
Posts: 129
Joined: Oct 2011

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

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

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

Wife of patient...
Posts: 129
Joined: Oct 2011

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

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

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...
Posts: 129
Joined: Oct 2011

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

Heeran's picture
Heeran
Posts: 173
Joined: Aug 2011

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.

Wife of patient...
Posts: 129
Joined: Oct 2011

Heeran, I hope your mother can come to the best decision for her situation too.
I will certainly keep you posted, and thank you for caring.

PS. Great picture of you guys.
Sal

Gatoraid's picture
Gatoraid
Posts: 71
Joined: Aug 2010

When I responded to your situation a few days ago, I really felt bad for you. Just as I was, your husband is in shock with the news of his cancer. Once diagnosed I spent several weeks researching every site I could find about this disease. One thing I found out is that the information is dated and inaccurate in many cases. 10 years ago, Adenocarcinoma of the esophagus was rare in the US but since then for some reason (chemicals in food?) there are many cases now. Much of the information I found put Squamus Cell and Adenocarcinoma of the esophagus in the same basket and the survival statistics mentioned are wrong. With T3n1m0 staging, the best way to look at it is that the chance of reocurrance is a 50/50 tossup. Chemo along with radiation followed by surgery is the best chance of success.

Information overload will cause you worrying about things that may never apply to you because we are all unique. I was afraid of the chemo and its 15 possible side effects. After 2 round of Cisplatin and 5fu only I only experienced 3 of the side effects the first round and 2 the second because I found out how to avoisd mouth sores (gargle 3 times daily with salt water during chemo).

If your husband has any questions or just wants to chat, I am available. We got this because it is the luck of the draw. I also was in excellent health and was never sick in my adult life. What I learned is that this brought me and my wife closer together (we were only married 9 months when I was diagnosed and I felt horrible about her marrying me with this disease).

Tell him to let his anger out, then apply it. With stage three, this can be beaten. Help him focus his anger into focusing on doing what he must to beat this thing.

Jim (aka gatoraid)

Wife of patient...
Posts: 129
Joined: Oct 2011

Thank you for the offer of communication for my husband,not there yet. You know, Husband has never been sick, has always been active. He is an avid scuba diver. Diving is his passion. I believe he might be afraid, surgery could be the end of persuing his passion.

Thank you Jim
Have a Wonderful DaY

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

I am so happy to hear that your husband is open to getting more information. I'm not sure where you are located but if Pittsburgh, PA isn't out of reach, I highly recommend it. Dr. James Luketich was my surgeon and his entire team was incredible. His contact information can be found at http://findadoc.upmc.com/PhysicianBioQuery.aspx?EPCDID=439. Dr. Gibson is one of the oncologists at UPMC. I met with him once after my surgery and found him incredibly personable and very knowledgeable. The word amazing is simply not enough to describe the care I received from any of these fine doctors.

As for the anger, that is natural. This disease isn't a punishment or fair or unfair. It plain stinks. I tried to find the good in it and I was able to. I became much closer with my faith and really found a lot of inner peace. I tell everyone, I'm a better man today than I was on February 27th and I wasn't too bad to start with. As for fair, the pediatric oncology waiting area is right beside the adult at the cancer center I receive treatment at. It just takes seeing one of those sweet innocent children going through what we are to realize the fact there is no fair or unfair, no guilty or innocent with cancer.

Again, I am so glad your husband is open to finding out more.

Wife of patient...
Posts: 129
Joined: Oct 2011

Jimbo, ...Gosh, that had to be diffiult seeing children going through cancer treatments. That would put alot things into perspective.

I am providng my husband with information reagarding medical centers 2nd Opinion drs. I will certainly profide him with Dr. Luketich name as well. Thank you.

I am so glad you are doing well.
Thanks Jimbo

Sal

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

What a blessing that your hubby has this anger and fight in him!! These things will carry him far in his battle against the beast. I know there is a Cancer Center of America in Phoenix which is a sister center to the one in Zion IL that I've heard so many good things about. If you're in New Mexico, that might be worth looking into. Don't forget to take good care of yourself as you go through this too. Go get yourself a pedicure and have an hour of "you" time.
Take care.
Rita

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Sal,

After my husband was diagnosed, I met a woman here (KS) whose husband had EC when they lived in Phoenix. He was treated and had surgery at Mayo in Phoenix 6 years ago and is doing well. He still goes back there each year for check-ups.
Angie

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Jim,
What a great post and a really great reminder that one of the very best fixes for the blues and for any pity parties I have can be so quickly silenced seeing innocent children being brave in the face of what we all face as scared adults. Talk about NOT deserving, not fair, not right, and a way to possibly question your own faith; if the pediatric cancer ward doesn't do the trick, there's no hope for me.

I truly believe God puts those children there to teach me how selfish my thinking and self-pity is. They are special souls indeed those kids, to be in those halls. They humble me so FAST. Thanks for the perspective.

God bless you. You have some great contributions here and I look forward to your posts.

-Eric

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