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oriontj
Posts: 390
Joined: Jul 2009

I'm new to this board..my husband was diagnosed with stage 3=4 depending on who you spoke with...in August. was misdiagnosed lst time around...his treatment since he had a maglinant subclavical lymph node was chemo and rad...which he completed October 9th..his treatment took place at the U. of Chicago..IL...he was in a clinical trial and was selected for the experimental use of erbitux...lst CT was clean after 2 weeks..endoscopic ultrasound showed a clean, clear espohagus with a lymph node on a gastric ligament which the dr who did the scope said..not to worry about along with the cytoligist...they'll be biopsed.

Surgery is not an option for him...

Pet scan will be Nov. 30th with the appt with the oncologist on Dec. 4th..

It's been a horrendous period...and now there's a lull...he has no trouble swallowing, never did...

This is such an awful cancer...I expect that we'll be forever looking over our shoulder and without surgery there isn't much chance from what I have read.

My husband made all the choices after doing no research whatsoever..I just bowed out..so it won't be my fault if it all goes wrong.

My psychologist says the spouse with the cancer must take ownership...I'm a Fixer and he's an Avoider...I tackle the problem while he pretends it's not there...but now I don't try to fix a thing..nor do I do anything special in any way...it's not an option here.

I had 3 knee replacements in 2 years one a revision and managed to do all I had to do..which was a lot and it's the pits...I figured he can figure out his meds.

My psychologist says it's tough love...he also sees my husband in his support group..

I have learned that Now is important and not to worry about problems I can't fix and I can't fix his cancer...

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

I'm sorry you need to be here, but welcome nonetheless. I would like you to know though, that I have heard of many people who did NOT have the surgery who have done quite well. Some are long term survivors. One in particular had mets in more places than I can remember, but he beat the cancer, and has been cancer free either 5 or 7 years, I can't remember off the top of my head.

In my caregiver's group, we were told not to do ANYTHING for our patient that he or she could do for themselves. Otherwise, we would begin to hold it against them, AND they won't get the movement and the mental stimulation THEY need. I went home from the group that day and told my hubby "It's your dish day!" That was in the middle of radiation! And you know what? He did the dishes! He said, "Stupid caregivers' group. I had it good until they came along!" And he laughed.

Be sure to update us on the pet scan results!

oriontj
Posts: 390
Joined: Jul 2009

Thanks for the welcome...who wouldn't let someone do it all for them? My husband did what he could during chemo and radiation..when he couldn't I would...but he has to do for himself...also.

?or sure the resentment would eat you alive...even the sad look doesn't do it...I cook he cleans up or vice versa...life goes on..and the darn dishes don't do themselves.

oriontj
Posts: 390
Joined: Jul 2009

suspect, you will do far more than worry--that is--unless you pack your bags and leave. If it hasn't been yet, you are going to find your world turned upside down. Let's be frank here. Your husband needs some coaxing and coaching. It's not as simple as you think. All the psychologists in the world, and all the tranquilizers made, will not relieve the agony that you are in for. Cancer is not for sissies

==I can allow my life to turned upside or not..I did at first but not now...worry causes anxiety and anxiety is always about the future..so you lose today...today is too precious to lose to what might be down the road.

My faith tells me God sees our birth and death... in a flash is out of our time continum..he has foreknowledge of all that will happen...we have free will so our lives are not predestined...I trust him and believe he will be there...I don't believe he answers prayers by giving us things we ask for...but rather the promise to be with him..

Believe me dear, it's not as easy as saying you won't worry about it. If you are the "fixer" you say you are, you will find it extremely difficult to watch your husband suffer. You will not be able to stay aloof and unaffected with an "I-told-you-so attitude", regardless of what your psychologist has said.

--How can you possibily say that you don't know anything about our life...you can't..so why would you do that..and please never call me "dear" it's condensending...

I am not a doctor. I am just a survivor of Esophageal Cancer, Stage III, (T3N1M0) who had pre-op chemo and radiation then an MIE. (Minimally Invasive Esophagectomy). Dr. James T. Luketich from the University of Pittsburgh Medical Center has pioneered this laparoscopic method of Esophagectomy. He has performed well over a thousand operations like this since first he began. He also has trained many other physicians throughout the country. May I suggest you call his office and ask if he has knowledge of anyone in your area who is well qualified to give perhaps a 3rd opinion.

==That would be my husband's responsibility...he chooses his treatment and drs..I don't.nor will I ever...I've been that route and he made it clear...not my choice..end of that one...so no I won't be calling your doctor...he would have to do it.

Pardon me, but I don't think the psychologist is the one to call the shots in this case. I think you should "take charge". Your husband will NOT have this cancer all by himself. You will be, and already are, involved. Loretta always says, "When Bill has cancer--I have cancer".

==that would be treating him like a child...I will not take charge...he doesn't want anyone else in charge...so that is not an option..and I'm comfotable with that...free will remember...he has it also.

Can you be content to watch your spouse suffer and say...
"It's not my worry? He's a big boy. He can figure out when to take his meds!"

==Yes I'm comfortable with that...he can do it...if the time comes he can't someone else will do it for him..me or hospice...or I'd end up doing everything all the time...that won't happen.

I'm an artist...when I paint..I concentrate on what I'm doing...so if his legs are working he can get it and not intrude on my time..you can't paint if you are interrupted - doesn't work...and he's fine with that...since he does like to eat.and have electricity and heat..

I'm intrigued by what you say here: First of all, do you mean both of you are in a "Cancer Support Group"? Is the psychologist counseling both of you separately and not as husband and wife as "one"?

--I see him privately my husband is in his group therapy at the local cancer center..

==My husband and I are not "one"...we are each our own identities...I don't need him to make me complete..I am complete standing on my own..isn't everyone? If not they should think about it...you don't give someone else the responsibility to make you happy you can do this...for yourself..

If I were the psychologist, I would be working overtime in counseling your husband to do some research! True, you cannot make up your husband's mind, but you'll rue the day you didn't do all the research YOU could do and then "tell" him, even if he doesn't want to hear it.

==rue the day...what does that mean? I already did the research and told him in the beginning...he dismissed it..so I am done...if he wants to know...he can now look for himself...and no I won't keep trying...once was more than enough for me..

So, "Fixer TJ", may I suggest you set about boning up on "coping with cancer". Forgive me. You may be angry with me when I finish, but sometimes the "truth hurts".

==I already boned up...the truth may hurt..but what you are saying isn't the truth in our circumstances which you know nothing about..but still felt you could lecture on it.

Esophagael cancer is what he has...

I have noticed mostly women mention how tired they are of doing things their husbands could do...it's a bit easier if you don't start it in the first place...

I do realize this could get nasty...the cancer..not the post..how nasty only God knows that...he knows our lives...

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

OrionTJ
you are so right--you can't fix the cancer. I am so sad to admit that to you--and myself.

But you can love, comfort and support him through it. Ironically, he can support you through this illness as well (as paradoxical as it sounds).

You are bonded by marriage, so painful as it is for him, it will be for you and visa versa. It will be easier for both of you if you go through it together. No judgments here---just sadness that many of our family members here are going through this.

I haven't shared this here yet, but one of my 4 children, a 10 year old is having symptoms of reflux. (she has even went through an endoscopic US). pattern. This is a precursor to Barrett's"s esophagus---which is a precursor of this disease we all collectively DETEST and dread..

So -- to all!!! treat your reflux NOW--- and until you are 90 (unless 90 is old enough for you..)

But to Oriontj--I feel for you both--KNOW that you can find support here or answers to questions. Many are going through the exact same situation---really. I am not a sose, so I don't have the dynamic you have to deal with. My mom has that job---my dad has esophageal cancer. I wish I lived next door and could help him in every step of this scary journey----but I live a 9 hour drive away. I would put up with some whininess and some bad behavior--but don't have much of a chance from this distance. You, though have a chance I would give SO much for. You CAN make a real difference in a loved ones life--that someone that is counting on you--that someone may recover and some day take CARE OF YOU?

I have rambled--enough--dont know if it makes sense. But my husband and I just came him form a prayer service & visiting hours for s dad/grandad/etc that died suddenly in a car wreck. I realize that cancer can actually be a gift...

I hope to post an article that someone sent regarding this---that I did not appreciate at first--but the wise thoughts have settled on my soul. Maybe it will be of soem comfort to others.

remember, we are all in this thing called "life" together...

Kim

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

I love your reply how true we have to be together in this i wished you lived next door too to take care of him, you have come so far hang in there its not much longer

Pull up your BGP and start going

Love ya
Lori

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

I am startin to think I may need big girls BOXERS instead of panties!!!! I mean panties are fine for regular issues---But this is something I feel totally unprepared for. Maybe I should put femininity behind and go for the "Big girl BOXERS" --so that I can take on anything!!!!

ok I am getting carried away... almost thought I could do it for second there!!!!!!!

You all know what I mean---the us and downs---the moments of strength----and--well NOT!

thanks --
Kim

oriontj
Posts: 390
Joined: Jul 2009

Nah...we can keep our pretty big girl panties...and let the guys wear the BIG BOY BOXERS...they also need to step up and deal with the problems..not just us.

Many marriages are not a "together" thing...again people do lead separate lives with separate interests...diversity is a good thing...

That said...I think I need some really cool big girl panties...like in leopard and purple..and while I'm there...I'll buy hubby some Christmas big boy BOXERS...

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

I wish I had the old post,but I'm not computor savy. I do remember these posts though.Thanks for bringing them up.

Sandra

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Sherry-thanks-- so many emotions going on-- So many memories of that time. I clearly remember the post Jan was replying too--it bothered me very much---but I still (as Jan/Oriontj does) believe CSN is over reacting... (banning the Marshalls & ALL of their posts from years back including personal csn emails)

I am so blessed to have had my dad & to have had him 2 1/2 years past his diagnosis...but still so sad that tomorrow it will have been 10 months since his passing. After his Esophagectomy 12/09 at DUKE he took a while to recover, but was able to return to one of his loves, volunteer firefighting which he had done for 50+ years! All the guys loved & respected him. He ended up getting numerous awards: Firefighter of the year, Dragon SLayer Award and outstanding Senior Citizen Award 2011 from the Jacksonville, NC Jaycees. I don't mean to brag--was brought up not to, but his memory brings so much pride to me. But as others who grieve--it continues to bring the heart wrenching pain & saddness. When does that stop? It's not something one can really ask co-workers or family members about. So if you have suggestions-let me know--I have probably tried them---I think I just need time.

Why bring this up? This is not about me. This board helped me learn & cope with EC and help& support my parents. The Marhsalls helped tremendously.

I strongly feel that an injustice has been done---unless I missed some extreme post or something (which I have heard was not the case).

There are new folks coming to this site---as scared & uncertain as we all were. They will not be able to get all the information that they would have gotten if William was here. Granted--I used to think he posted way to much & may overwhelm the newbies--probably because I could only take in small chunks of the info in at a time. Just like my 4 children---we are all different & that does not make one better or worse---just different. William is William & I am glad he has what my mom would call "intestinal fortitude" and say what may need to be said to get someone to go to a specialist or what ever. That being said, there are times I agree where they may have went overboard, but we all looked at it as we would if it was our own family member. We didn't support it, but didn't condem or judge either. WE SUPPORTED ALL the folks on this BOARD.... like a virtual family.

I guess I just want to say thanks to sherri---for re-affirming what I thought this board was about---supporting each other though the good & the bad, especially the bad because EC is tough...

thanks SHerri for all YOU have done as well...

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