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husband diagnosed...i'm having trouble coping

crose
Posts: 9
Joined: Jan 2009

My husband was diagnosed with EC with metastases to the lymph nodes 2 months ago. He refused the treatment offered nearby since he doesn't think it will help his survival chances (chemo and radiation with complete removal of esophagus).

We're checking out Cancer Treatment Centers of America to see if they may do some good...but it's stage 4. Has anyone ever survived stage 4 esophageal cancer?

Right now I'm having trouble coping more than he is. He's 49 and otherwise in good physical shape, and his job is to finish building our house (just the kitchen and bath to complete at this point). So he can take breaks during the day and take care of himself. I work at a teaching job (7th and 8th graders) and then come home to cook and make fresh vege juices and whatever else needs to be done around the house. Most of the time I take this on as something I want to do for him and myself, but sometimes it feels like I have 2 jobs and just collapse at the end of the day.

The worst part of it is that he seems to be on an emotional roller coaster as well. At times he is really loving, and then in a moment he strikes out in anger.
How do you manage the emotional ups and downs?

TomF
Posts: 2
Joined: Jun 2008

The emotional challenges can feel overwhelming at times. A "roller coaster" ride of highs and lows of hope and mental stamina is a common experience for EC patients and caregivers. At times since my Dx (March 2008) the psychological strain on my dear wife has been greater than on me as patient. Take advantage of a supportive and empathetic EC community with years of experience at sites such as www.acor.org (specifically http://listserv.acor.org/archives/ec-group.html) and www.eccafe.org. At the latter site, some of the 5-year, stage IV survivors have registered. That said, upon what basis (Dx tests; MD specialists) was "stage IV" declared? EC constrained to regional lymph nodes (no involvement of celiac nodes or any organ) would not typically be so classified. You must take any actions necessary to ensure your husband receives truly supportive, specific medical guidance (and then treatment!) from specialists (oncologist, radiation oncologist, thoracic surgeon, and gastroenterologist with EC experience *all* play a major role in advance disease).

shanet66
Posts: 1
Joined: Feb 2009

In 2003 I under went surgery for SCC(sqamos cell carcinoma) of the esophagus and larnyx, Stage IV. This was a huge hit considering I was only 36 years old, marrried with two kids and enjoyed my life. Your husband is going to go through an emotional roller coaster but if he has the surgery and treatment that his Drs. are recomending he can survive. My last P.E.T. scan was a couple of weeks ago and it wasn't perfect but we're on top of it and it appears to be just shadows of swelling and scar tissue. There are alot of things that will change in your lives but with the support that is available here and on other sites you'll do alright. I've had a laryngectomy, esophagectomy with gastric pull up, thyroid and parathyroid removed, part of my collar bone removed, my left pectoral muscle moved for blood flow and support of the stomach placement, and my vertabre scraped along with 2 months of radiation. It was hell to go through but the outcome for was worth it. I've had to make some changes in my life but nothing so extreme that I can't do without. If you and your husband have questions about what he might expect after surgery don't hesitate to ask and I will be glad to give you as much information as I can. Take care and good luck.

ucanbeatit
Posts: 1
Joined: Mar 2009

Hi Rose, I thought I would see how things are going for you. This is the first time I have been on this sight, as my husband was also most recently diag. with Andocarcinoma. They are not telling of the stage, although we were told T3. Not sure what that means and they are scheduling a Pet scan. We pretty much feel left in the dark and still asking ourselves if this is really happening. I wish someone from the medical field was holding our hand and guiding us like children at this time. It's hard not to feel helpless at this time, but I will pray that you both have hope and visualize a recovery. I would find a supporrt group for yourself, and hopefully for him as well. I am scared to death of this and keep asking myself "what does this all mean and now what". The research is overwhelming. How do people choose the doctor and cancer treatment facility of choice, as I heard that is a very important deciding factor. Can anyone help out with that info.? Where do you go for this type of cancer?!!! Not all doctors are created equal and in this case we are looking for above/best.

judyloo's picture
judyloo
Posts: 39
Joined: Jun 2008

One year ago my husband was DX with t3 adenoca of the esophagus (EC) at the GE junction; it quite literally blew our "normal life" apart. We (and the GI MD & our PCP) waisted NO time getting us to a major Medical Center that does the surgery routinely (the more they do the better your outcome) and to an Oncologist and RAdiation Oncologist. Our team got my husband staged and started the preop chemo/rt immediately! Certainly quite a battle (and often a painful one) against EC but we knew there was light at the end of that tunnel - then came the surgery. Yah it was tough and it was scary but without all of the treatment I believe my husband would not be with us today. Some times you just have to hang tough and then sometimes ask for prayer and "positive" thoughts from family, friends, co-workers and at times complete strangers to get you through! My husband finally learned the power of prayer and how important support (calls, cards, visits, letters) factored into his treatment and getting well. Also, my daughter (the tigress) watched her Dad like a hawk anytime he was hospitalized and we all became advocates for him. If you husband is on the roller coaster ride like mine was he needs meds to help him cope for awhile - the sooner the better. A friend of mine DX with ovarian ca said the three things anyone newly diagnosed with cancer needs is medication for depression, pain medication and a stool softener (I thought she was joking with the last one but she was spot on). I cannot tell you what Med Center to go to but your Oncologist will cue you in to the ones that do the most procedures - we were lucky and our Surgeon/Hosp was the right choice for us. (we are in New England) I wish you both God speed, and remember, never give up, never give up, never give up!

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

hi I read your story and would love to be able to chat with you, i too am having a hard time coping and know exactly how you feel, one hour they are fine and the next they are lashing out at you, and by the time you work all day and try to make them happy or try to get the things done they are wanting its hard, my husband is 45 years old was healthy and doing good, he was having problems swallowing and has had acid reflux for several years but also was hurting around his gallbladder so they were trying to treat that first, he was a heavy drinker could drink a 30 pack a weekend, if not more, and smoked a carton of cigaretts a week, when he had the scope done and the doctor told us what he had we were devasted, we found out on april fools day that was not a good joke!! he is stage 2 and not in the lymph nodes, is operable and cureable according to his doctor, he started his first chemo on april 7 did wonderful, then the 2nd chemo came in 3 weeks and didn't do so good has been really hard on him, more on me, lashes out at me hateful and nothing you say is right, you just want to leave and not come back, or rather thats how i feel. he is now fighting the mouth sores in his mouth which is very painful and is keeping him from eating. I am here in the same situation as you and hopefully we can talk with each other and get through this together we live in oklahoma and going to cancer care associates and really like the doctor we are using but like you said what else can we do or how can we cope with things. please talk to me i would like to have someone to talk to about things too. hopefully our husbands will fight their cancer together.

judyloo's picture
judyloo
Posts: 39
Joined: Jun 2008

Steve went through a very emotional time in the beginning and the chemo/rt did not help that either. My strong independent and very supportive husband changed overnight (he went on line looked at the stats & thought he was going to die - actually started to get some of his affairs in order.) I knew he needed more help and he was the one that actually decided to take an antidepressant to smooth things out around the edges - it worked! If your husband will talk about it and is open to it get him to discuss this (or you let the MD know) with his MD. It did not work over night but in a short time Steve was able to handle things more calmly. Oh Moe the patience you must have and the support you BOTH need can't be stressed enough. I could not have done this on my own and enlisted every friend & family member to reach out to Steve ALL the time. Now the mouth sores - Steve suffered the most with them - just know in 2 weeks (for Steve) they were gone and he could eat and drink again. However, during the mouth sore time he had to be admitted for IV hydration; another patient in the room with Steve suggested he get some MagIc Cream cups (like ice cream) since its cold and full of calories and this he could get down. They had it in the hospital and since then I have found it online for a friend (I think its a HORMEL product) in other flavors. I expect your husband is loosing weight like mine did (thank goodness he was overweight to begin with) but it was not being able to keep up with the fluids that put him in the hosp. (he and his surgeon did not opt for a feeding tube prior to surgery) I'm sure they have given him the lidocaine swish (which hardly lasts long enuf to eat or drink much of anything) and if hes like Steve he'll use it liberally. Let me know how he and you are doing - this chemo phase was truly hard but it is limited!!
(maybe we could chat in the "chat room" sometime if you would like?)

Keeping you both in thought and prayers,

judyloo

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

thanks again, i am very new at this so i would love to chat in the chat room but how do i do that please let me know.

moe

judyloo's picture
judyloo
Posts: 39
Joined: Jun 2008

Moe - I had to go exploring since I was there only once and that was by mistake! First you click on CSN home (see at the top above your blue box), on that page in the middle is a box with a blue banner which says connect and communicate, click on chat room and it takes you to "the lobby" where I would guess people meet there to "chat". If they want more privacy they can choose room 1 or 2 to go to talk a bit more comfortably. The one time I was there two people immediately stopped chatting and welcomed me very warmly. Must be a good place to go for support. We could try it some time - pick a date and time in the near future, we both agree its a good time, and we can give it a shot. How bad could we be? New to both of us.........no, I am not a computer geek, barely literate.

judyloo

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

whats your time difference there it is 7:oo pm on tuesday June 2, that would help me.

thanks
Lori

judyloo's picture
judyloo
Posts: 39
Joined: Jun 2008

Lori, if you are in the midwest we are one hour ahead of you - 6:00 there 7:00 here; Do you IM? If so we could add each other as buddies (to our buddy list) and not use their chat room at all. Just a thought. I do believe its a free download from AIM.

Judy

judyloo's picture
judyloo
Posts: 39
Joined: Jun 2008

Lori, if you are in the midwest we are one hour ahead of you - 6:00 there 7:00 here; Do you IM? If so we could add each other as buddies (to our buddy list) and not use their chat room at all. Just a thought. I do believe its a free download from AIM.

Judy

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

Judy,

i don't know anything about IM what is it? Thanks i am starting to meet some friends on chat line too. so i do enjoy that alot. it breaks things up.

I am cental standard time.

Thanks
Lori (moe)

ctgringa's picture
ctgringa
Posts: 2
Joined: Jun 2009

I can't believe how similar our stories are, I felt like I was reading my own thoughts, when I read your post. My husband was also diaganosed with stage 4 esophageal cancer and we found out on April 1st of this year. I kept waiting for someone to yell "April Fools!". He also started his chemo, very strong and has little by little gotten worse with each treatment. I am up at 5 every morning, make him a protein shake, with fruits and then I process some soup for him to take to work and it seems nothing I do is any good. Any advice I give is tossed and replaced with what so and so says at work or the guy at walgreens advises or the gas station attendant, I have become an insignificant entity is this life of ours. he has become so self-centered and mean. I work all day and I do not look forward to coming home and I totally dread the weekends. I have a 9 yr old daughter and I hate for her to see me so sad at home. She is going away for 6 weeks for the summer and I can't stand the thought of being alone with him. I feel so guilty for having these feelings, I love my husband so much, but I just can't stand him right now. I pray every day for patience and understanding and compassion and most of all strength to keep a smile on my face. I am generally a very happy person and always try to keep a positive attitude, but I like you, really feel like running away from this all, at times. Thank you for letting me share with you. I look forward to hearing back from you.
Maureen

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

maureen,

All i can say is hang in there, we still have days that I cant stand my husband, I understand your feelings, I can't believe he is still working, my husband is on disability, and not able to work, so mine is home everday while I work, he is scheduled for surgery on July 14, for esophogeal cancer, he is not suppose to drink or smoke but he does and i guess he will till he has the surgery. yes i too was waiting on someone to say April fools, to me, there is a chat line you can go to to chat with people and it really helps it has me, on a lot of things, so you might want to go in and check on that. if i can help in anyway pleased let me know

keep your chin up I cant say it will get better cause i don't know yet but i will try to help you.

Moe (lori)

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

Let me tell ya, sometimes I really am miserable--because it takes nothing for my hubby to switch from the man I have been married to 20 years to this obnoxious jerk. His cutting remarks and his obnoxious behavior during those times just terrifies me. Sometimes I am so mad at him...I mean I am trying to help him but he doesn't seem to care about my end of this. I will still have 3 kids to finish raising if he doesn't make it, and I still have to deal with the part of our lives that is not touched by cancer. I can't get over how rude he can be.

But, I know he is scared, and I know the meds mess with his head. So I try to be patient and understanding. But it is nice to hear another caregiver expressing what I have been feeling. My hubby is also stage IV and we are currently undergoing proton radiation and chemo at MD Anderson. We are living in a little one bedroom condo with our 13 year old, and handling it day to day as our other kids live in Vegas with our 18 year old. It's difficult, to say the least. The whole family is affected, but it is hard for the patient to see that, I think.

Wow, if you'd like to email me, you can if you can figure out how. I can't figure out private messages on this thing.

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

Well, he was diagnosed with a tumor at the ge junction and three nodes. Now he has only one node and it is next to the ge junction. He's on proton radiation and they are telling us now that he'll get surgery and that they are seeing great results with that in folks with Layne's diagnosis. He is doing very well. He is eating everything, putting ON weight, and is still active.

In fact, if you didn't know it, you'd never think he had cancer right now. And we have gone through our first set of chemo, and are now on a second round with daily pump and radiation. I'm in awe of how he is handling this.

We are believers, so we know that this is in God's hands. He's worked so many miracles for us that I really can't list them all here. Everything from housing to doctors, to nodes resolving. God has truly walked all the way with us.

It was nice just to be able to type out my concerns...I love my husband dearly. I just get frustrated with the whole situation sometimes. I'm sure you all understand.

Thanks for the info.

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Betty,

As patients, we can be very scared at times and take it out on those closest to us, which is generally our significant other. It is great of you to be with your husband during this time. While I was on radiation we lived in Rochester, Minnesota for the Mayo Clinic for 5 weeks, and my husband never left my side. I owe him the world for being there for me, and I'm sure your husband feels the same. I was 23 when I was diagnosed and married for only 4 months, so there were not any children involved, I can't imagine having a family to raise during this difficult time you're going through. It sounds like you and your family are getting along very well considering the circumstances. I wish you the very best!!!! We are all here to listen if you'd like to chat more!

Cathy

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