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Hi all,

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

Although I've been posting on the esophageal site here for months, I have not ventured into the caregiver site until today. I guess I've just been so busy trying to 'fix' my husband, that I've forgotten about myself. But, alas, here I am. Let me introduce myself.

My name is Chantal and my husband is Lee. He was diagnosed January 2011 with esophageal cancer with mets to the liver. At the time of diagnoses, there were 15 spots found in the liver. He was told that he had 9-18 months if he was treated, 6 months without treatment. We decided to begin chemo immediately. He is not able to have surgery, nor radiation, so chemo was our only option. He began treatment In mid february, and continued for 4 rounds, ending in June. Upon having a CT scan, they told us that the tumors had shrunk, so yippee, take a chemo holiday! Of course we were very excited by that news, and planned a celebratory vacation in Las Vegas for the first week of July. Of course, the best laid plans, and all that...... He became quite ill right before the trip, having severe pain in his lower stomach, complete lack of appetite, vomiting at the mere sight of food, hot and cold flashes etc. We decided to go ahead with the trip, and were able to see some great shows, but overall the trip was pretty miserable for him.

When we returned, a few days later his pain was so intense, we went to the ER. They did a CT and discovered that the tumors have grown by 50% and the esophageal walls had thickened. So they wanted to re start chemo, ASAP. We decided to go for it, and began the second week of August. At this point, after almost 2 months of eating very little (and may I emphasize VERY) and drinking even less than that, he was starving, dehydrated and losing weight at an alarming rate. We demanded a feeding tube, which we had asked for starting in July, and the doctors seemed to think he did not need it. Not sure what their rationale was there, but finally they agreed, and took him off his round of chemo to prepare for the feeding tube surgery. This all went off fairly well, he had quite significant pain afterwards, and still has some discomfort, but overall, I think the nutrition and hydration has helped.

The doctors wanted to re-start chemo this Thursday, and we've been see sawing back and forth, wondering what the point is. Overall, his emotional state is very fragile, his health is fragile and his moods are becoming dark. (not violent, just very sad and seems to have lost all hope) We were told that treatment for stage ivb is palliative in nature, and would improve quality of life. Well, sorry but we have not had much quality in a very long time. A good day now seems to be when he is not sleeping all day to avoid the pain and depression. So anyways, after a lot of soul searching and discussion, tears and more tears, he (we) have decided no more chemo, let the chips fall where they may, let nature take it's course, whatever you want to say. So, honestly I'm ok with his choice, relived almost. It has been so hard watching him suffer for months. He has had few joys, pretty much refuses to leave the house and sits around moping all day. I certainly don't blame him one bit, I'm actually not much better. I've become a hermit as well. I feel extreme guilt leaving the house, especially if it's to go off and do something fun. Also, often when he does eat or drink something, it gets backed up in the esophagus and he starts choking. I'm terrified to leave the house for fear that he'll eat something and choke to death, without me here to help dislodge the food.

I don't know what's in store for us in the near future, I'm terrified, sad and the question 'why Lee" is constantly in my head. He is such a wonderful man, never did a darn thing to deserve something so awful. We were married in May, 2010, so we've only had one anniversary. (We've been together a total of 7 years however, and living together for most of it) I've been robbed of many wonderful years with the love of my life. I'm only 39, and the thought of being a widow is incomprehensible.

I'm just terrified of the dying process. I hate seeing him suffer constantly. It rips my heart out. I don't want to lose him either, but hopefully he'll be able to have some quality pain free time before the end comes. I hope I'm strong enough to face what's in store.

Thanks for listening
Chantal

KateNTx
Posts: 39
Joined: May 2011

My God, Chantal Ric and I were together the same amount of time, and we also just had our first wedding anniversary. We were married, one year, one month, and 13 days. I'm 30, and I'm not sure I comprehend the last year yet either. If he doesn't want treatment anymore, get hospice. I wish, in retrospect, Ric had opted to stop treatment in April. Hospice kept his last days from being pure Hell on both of us. You will be strong enough to get through this. I'm not sure how, but you will.
Kate

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Chantal, I respect you and your husband's decision so much. My mother was told Friday she had to decide between salvage chemo (it would have been her third series) or accept things and get comfortable, and she opted to drop out of the desperation race. It takes a lot of courage. Your husband must be a wonderful man.

You should read Final Gifts, available at most libraries. There is a lot of adjusting and getting ready that goes on in the last days. Life is not over just because it is going to be. Learning more about the process may open you to its wonders, which may make it hurt a little bit less.

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

Thank you so very much for your replies. Yes Kate, I read a bunch of your posts and thought the same thing, wow, do we ever have a lot in common. I am so sorry to hear the pain you have suffered. I hope the coming days bring you peace and loving memories. You were robbed, way to young...... so sorry.

Barbara, thank you for the advice about Final Gifts, I researched it on Amazon, and it was very highly reviewed. I will definitely pick up a copy next time I'm out and about.

We had our appointment yesterday, and were given the bad news that everything had grown yet again, but we are standing firm on the now more chemo. He is more afraid of chemo than death. I support his decision entirely, even though at the same time, it makes me so sad, that there are no other options for him....

Be well Ladies, stay strong,
Chantal

grandmafay's picture
grandmafay
Posts: 1627
Joined: Aug 2009

Only the two of you know what the right decisions are for you. I agree that you should consider Hospice. They are very good and are there for the family as well as the patient. My husband chose to fight and buy as much time as possible, but that was his decision. Each person must decide for themselves. Either way, you have a rough road ahead. Take care, Fay

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Chantal,

I would recommend hospice care immediately.

As for your decision? You have chosen Quality of Time over Quantity of Time. Not an easy decision to make and one many of us (myself included) have struggled with. It is never an easy decision and not one to be made lightly. You'll get the well-meaning souls who say "yes, but if there is any chance of extending their life by "x" amount of time, you should get all the time out of it that you can". Wrong!!!!

You love your husband very, very much. I can hear it in every painful word that you write. But you love him enough to let him go on his terms. You are an amazing woman, with more strength than you realize. I hope and pray that strength will hold you in good stead in the months to come.

Peace and Blessings,
Teresa

nancyann3
Posts: 196
Joined: Mar 2010

I am so sorry for what you are going through. I lost my husband 19 days ago to EC. He also decided no more chemo after the recurrence. As the caregiver this is hard for you. It was for me. For me, I had been at battle with this cancer for over a year and when he decided no more treatment, I felt I lost the battle. I was supportive to him, but had to deal with that battle on my own. I stood behind him and promised to do my best to keep him comfortable and that my wish for him was to just go to sleep. I had the honor of being there as he took his last breath and it was very peaceful. I could feel the relief come across both of us. I to was very scared, but when the time came, all I could feel was peace.

What helped me get through my "lost battle mode" was when he passed, the beast was going to die too. My hubby is at peace and has no more pain. And the beast is dead, and I KNOW it doesnt go to heaven.

Get hospice involved. They will help you as much as him. They are always a phone call away, 24 hours a day. Its a scary road you both walk. No way around it. Tell each other you love each other everyday. You are both brave and strong people.

Take care
Nancy

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Hi Chantal,

I just also came across the caregivers board while being in the lung cancer board since March. Anyways as my husband has Stage IV NSCLC with mets all along his aorta and other spots, I understand exactly how you feel from reading your concerns. What did my husband ever do to deserve this? He is 54 years old and we have been married for 6 years this past April. I am 43 and also too young to be a widow. But as it has always been my husband's decision he never wanted to do chemo even though the doctor's recommended he should. He did do radiation to reduce the tumors but that stopped in June and since then they are coming back to this day. He is currently on liquid morphine and has been on hospice since May. My husband basically sleeps alot stating that he only does that because he is bored. I know that that is not the case but I won't argue with him. I want to make him as comfortable as I can with what time he has left.

I do feel the same guilt when I leave the house. When I do go somewhere it is real close by and usually to get whatever he is wanting at the time (groceries/meds/etc). I have never been a "homebody" but I love my husband so much that I really would rather spend my days with him.

I hope that you are taking care of yourself too. My thoughts and prayers are with you and your husband.

Thanks for listening
~Kelly

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

Thank you all for the kind words and encouragement. We seem to have fallen into a bit of a better state since we told the doctors our choice. I guess we are both just a bit relieved to be done with chemo.
We are both so scared of what the future will bring, and I know that he is going to pass away at some point. All I can do is hope and pray that he can enjoy whatever time he has left without pain, and with as much love and happiness as he can.
be well, all of you,
Chantal

buckeye2
Posts: 427
Joined: Jul 2011

I want to wish both you and your husband peaceful days ahead. Like you, I have have only been posting to the crc board because I have been unable to focus on anything but getting him better. I respect your choice and fear that someday we may be in your shoes as my husband hates chemo that much. I wish I could take it for him but wonder if I had to do it once whether or not I would do it twice. It's nasty stuff and I am glad your husband doesn't have to suffer through it again. Lisa

rebing
Posts: 7
Joined: Sep 2011

I feel your pain. My Mom decided in May no more chemo it was making her so sick. We are living day to day. We have hospice which is good. I am lucky to have a great husband who never has said a word since Mom moved in with us a month ago. I pray one minite for to last a little longer and then in the next breathe for the Lord to give her peace. She has fought so hard since June 2010. So hard went through cancer with my Dad who passed away at the age of 54 and I helped Mom care for him the last 2 months.
I have no words to help you along- just remeber I will pray fo you both and sending (((hugs))
Becky

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