Introduction

I am trying this again because my post disappeared.  Hope I don't end up posting twice. If I do, I am sorry

My name is Robin. Although I am technically new to the board, I have been lurking for a couple of months.  Just not knowing what to say. My husband Donnie was diagnosed October 9th 2007 with Stage 4 esophageal cancer.  It is in the base of his esophagus and in some lymph nodes. We were told chemo is his only option.  You know, get your affairs in order all that good stuff. They make it sound so easy.  He has been taking chemo a while now and the last scan was good, the tumor is shrinking.  He is 43 years old and is in good health other wise. 
The reason I am writing is for emotional support from other caregivers.  Do you feel alone as I do?  You know I am blessed with some great friends. Some I think don't come around as much cause they don't know what to say, but I have some that are here every time I need them. Is it crazy to say I have never felt more alone in my life?  Yes my friends are here and are great support but when they go home, their family is still in tact.  Their life is still"normal".  I feel even though this affects them, they just don't get it.  I tend to write to deal with my emotions so I am going to post the last thing that I wrote.  One of my friends told me that other people going thru what we are would relate. I hope you all know how I have followed you and even though I haven't said it out loud on the board, I pray for all of you.
God Bless

Here is what I wrote.

"Somebody Stop the World"

Somebody stop the world,

I want to go back.

 

I want to go back ,

Before cancer

Turned our world upside down.

 

I want to go back

 this wasn’t supposed to happen to us,

 not to you .

 

I want to go back ,

To our carefree days

And future plans.

 

I want to go back

before doctors and chemo

and losing your hair

 

I want to go back,

When you were so strong ,

You seemed invincible

 

 

I want to go back,

When I didn’t cry every day

for fear of losing you.

 

I want to go back ,

To where people didn’t avoid me

Because they don’t know what to say.

 

I want to go back ,

To when we still had forever

And weren’t living on borrowed time.

 

I want to go back ,

To a point in my life

I wasn’t so angry with God.

 

It wasn’t that long ago,

Though it seems like forever

 

Somebody stop the world,

I want to go back…………………

 

 

Welcome to the board Robin. So sorry to hear about your husband.  I just lost my mom a few days ago to cancer. She had esoph and lung cancer over the last year.

 

I can relate to you wanting the world to stop. I've said many times over the last year that I want off the roller coaster!  The emotional ups and downs- feeling better, feeling horrible, a good doc visit, a not so good visit, a little victory with eating, then fighting not being hungry ,into the hospital, back home again. It was such a long hard year of up and down emotions.

Hang in there! Try to enjoy the time you have.

Hi Robin - I am sorry you had to find this board, but, I will say the people on here are phenomenal!  This board is what got me through my Dad's fast and furious battle with E.C.  The people here are strong, compassionate, inspirational and of extraordinary character.  For that, I am glad you found this board.  I lost my Dad to the first round of chemo and I have felt everything you wrote.  I do feel in my Dad's case, the chemo overdose was divine intervention and I feel it was the miracle we were desperately looking for.  With your husband's age and overall good health, have you gotten a second opinion?  Are you at a reputable cancer facility?  Are they doing radiation too?  I also read a lot of the posts on Cathy's EC Cafe and I am amazed at the number of long term Stage IV survivors on that board.  On that board a lot of the EC patients themselves post.  I was stunned to find so many that were Stage 4 with many mets  and were given chemo or chemo and radiation and then re-stage to a lower stage because the tumor shrank and the chemo and/or radiaition was effective enough for them to then receive surgery.  Many of these people are well over 5 years out from their diagnosis date!!  One common thread seems to be experience teams of doctors at experienced facilities.  Listen, if the philosophy of one hospital or doctor is that Stage IV should be dealt with from a palliative stand point only, then, they will do NOTHING to try to cure.  If, however, you are with a doctor and/or team from a hospital that believes some Stage IV patients are viable, they will treat the cancer more aggressively from a curative stand point.   There are many people on Cathys EC Cafe (just google that) that were in far worse shape than your husband!   I REALLY think you should seek a second opinion at a very experienced, reputable cancer facility.  My thoughts and prayers are with you.  Please keep us posted!  karen

Hi Robin-I've had messages diasappear and think it is a thing with my laptop.  Seems like if mail comes into my mailbox while I'm writing email, whatever I'm working on disappears.  We are a bit past two years, and I can totally relate to your writing (although I do not allow myself to cry much of the time-just pick myself up and try to be positive-my own personal coping mechanism).  I agree with the person who asked about second opinions.  At 49 with prior good health, and an initial dx of EC with mets to lung, we used radiation and chemo simultaneously in an attempt to make the esophageal operable/remission possible.  We did the surgery, and although it has returned to his lungs twice, we have beat it back twice more with periods of relatively good health in between (as good as it gets after surgery since that is a major adjustment in itself).  If you haven't had a second opinion, I would recommend getting one.  I know care can vary widely depending on where you are and how accessible the better cancer centers are.  That's not saying that smaller facilities aren't an option for treatment, since we live less than an hour from Boston and chose not to go into Dana Farber or Beth Israel because the care we are getting is as good or better than what we would have there.  You just need to find someone with alot of experience with EC, who is willing to give you the chance to fight it without believing in all the hideous statistics.  I know our oncologist tormented herself over whether or not to treat him in the beginning because according to the odds we shouldn't have made it, so I feel very blessed that she was the doctor we were led to for treatment.  Although I haven't been on this board long, I already know this group is there for you.  Good luck with it all. 

Thank you both so much for your kind words.  We are having treatment in Baton Rouge Louisiana and for now, I am happy with his dr.  the first time we went for his diagnosis, he wasn't all doom and gloom but he was very realistic with us about this disease.  He never gave us a time line. I don't want that anyway. I am not focused on how long they think he might have, they don't know.  They are only guessing.  After his last scan, even the doctor seemed surprised at how well he responded to his first round of chemo.  They say radiation isn't an option because right now, the area is spread out to far due to lymph nodes.  He said if he can get it shrunk down to the point that it is confined to a smaller area, that we would try radiation then. 
I have read so many posts on this board from people just like me.  I have my family and my friends around me but you all know that they can't possibly understand what I am going thru.  We have 3 children. They are 20, 17 and 15 and in July we became grandparents. Our 20 year old daughter had a beautiful baby girl who stole our hearts.  It's just unbelievable that we can go from one of the happiest days of our lives to this in 3 months! 

He goes back for another scan on the 16th and then we meet with the dr again on the 21st to get results.  I am praying that he will tell us that the tumor is still shrinking but am afraid to get my hopes up.  It had shrunk by almost 50 % last time!!!  That was a miracle in itself. I am afraid of not getting good results again.

Thank you all so much for providing a sounding board to me, yourselves and everyone else faced wiht this dreadful disease.

God Bless you
Robin

 

Dear Robin:  My name is Lynn and I lost my 35 year old son to this damn disease on October 7, 2007.  He also had Stage 4 when diagnosed and was told that he only had 3-4 months WITH treatment.  He chose to fight with the most new and radical treatment that he could get.  He lived exactly 18 months and one day from the day of diagnosis to his death.  He wanted to die at home and did - very peacefully I might add.  Many many days I want to go back and be at the time of my life before cancer entered it and finally took my son.  All I can offer you is support and the words that my beloved Robbie said to me every day - take it one day at a time Mom - one day at a time.  Robbie left behind a wife and two little girls aged 8 and 5.  His 8 year old turned 9 10 days after his death.  I still cannot fathom why my beautiful son - he has do much living yet to do.  In the end it was me who gave him permission to go.  My mother has always been very self centred and hard and so I really did not expect support but prayed that the terminal illness her grandson was fighting would bring us closer together - it did not happen.  Live each day as though it could be your last.  When your hubby is feeling up to doing something - do it !!! Robbie went power boat tubing, and we cashed in some savings and purchased a trailer to take the whole family camping this past summer.  I look at the trailer now and I don't want it but I know that we need to make new memories.  Make all the memories that you can.  Take lots and lots of pictures with your grandchild and your husband.  Enjoy each day.  There will be many ups and downs.  I was strong for my son as he asked me to be and I worked as a legal assistant in personal injury law up until I could see the end was coming.  During the last few weeks of his life he was at home and he dictated cards for all of the important events in his daughters' lives all the way from Fist Communion to the birth and baptism of their first baby.  I printed them for him as he was getting too weak and he signed everyone "Love Daddy".  I know in time my grief will lessen. I promised to be strong for my son and I did that and now it is my turn to grieve.  Do not fear the worst yet.  My Robbie took only Tylenol 4 up until 1 1/2 weeks before he died.  He asked our family doctor to remain at home until his death and our doctor gave his stronger medication to ease the pain and on the night before his death I told him that I could not stand to see him suffer - I loved him more than life itsefl but it broke my heart to see him suffer.  I miss him every day.  At this time I have trouble remembering all of the good times but that day will come.  Don't feel that the end is near.  Robbie had esophageal adenocarcinoma at the GE junction with lymph node involvement and mets to the liver.  He managed to hand on and live - actually live - for far longer than the drs predicted.  Just 4 days before he passed he was driving his own car and picking up his little girls from school.  You will be surprised how strong these patients can be.  Just hang in there and be there for your hubby.  Do whatever he wants and you will have nothing to regret.  I do not regret anything except that my beloved boy is not here to be with his family.  I am helping my daughter-in-law and my 2 granddaughters as well as my other 2 boys and their wives and 4 granddaughters.  I am not ready to return to work at this point.  Please Please be gentle with yourself and remember to eat 3 meals each day even if you don't feel like it.  You need to be strong and healthy as you can be.  Please know that I have your family in my prayers and I wish you all the best.  Perhaps your hubby will be one of the lucky ones - I sure hope so.  Lots of hugs to you and God Bless.

Love Lynn

Dear Robin,

Your post touched my heart so much.  My husband has EC stage IV with metastasis to the liver and lymph nodes.  He was diagnosed Dec. 21, 2006.  And he was given very little hope - some doctors told us to contact Hospice immediately, other doctors told us that he had at most, 3 months.  Thankfully we found a great oncologist who wanted to help him and treat this horrible disease.  She told us that he was terminal but that he could be treated and maybe given extra time.

Fast forward to today.  It's now been one year and 20 days since his original diagnosis!  Harley (hubby) did respond very well to the first chemo treatments, and he actually was in partial remission in August 2006.  During the time between Dec. 21st 2006 and October 2006, we went away for a weekend to celebrate our 43rd wedding anniversary; we went on a 12 day cruise in September to the East Coast with all of our family; and we took our son, daughter-in-law and grandson to Disneyland in October 2006!

Unfortunately, the 'beast' rose it's ugly head again in October and now Harley is once again fighting for his life.  Right now he is a bit better than 2 months ago, but his weight loss has been drastic.

The reason for my message to you is to NOT give up hope!  There are success stories with EC patients - and the fact that your husband is responding well to the treatments is wonderful news.  Go do things together - have fun - enjoy life together.

Your poem touched me so much, because you wrote exactly what I feel too.  I'm sure most of us can relate to what you wrote.

But please stay as positive as possible for your husband - and please take care of yourself!

You and your husband and your family will be in my prayers.

Gentle hugs,

Azzie/Pat

 

On 1/10/2008 Azzie21 wrote:

Dear Robin,

Your post touched my heart so much.  My husband has EC stage IV with metastasis to the liver and lymph nodes.  He was diagnosed Dec. 21, 2006.  And he was given very little hope - some doctors told us to contact Hospice immediately, other doctors told us that he had at most, 3 months.  Thankfully we found a great oncologist who wanted to help him and treat this horrible disease.  She told us that he was terminal but that he could be treated and maybe given extra time.

Fast forward to today.  It's now been one year and 20 days since his original diagnosis!  Harley (hubby) did respond very well to the first chemo treatments, and he actually was in partial remission in August 2006.  During the time between Dec. 21st 2006 and October 2006, we went away for a weekend to celebrate our 43rd wedding anniversary; we went on a 12 day cruise in September to the East Coast with all of our family; and we took our son, daughter-in-law and grandson to Disneyland in October 2006!

Unfortunately, the 'beast' rose it's ugly head again in October and now Harley is once again fighting for his life.  Right now he is a bit better than 2 months ago, but his weight loss has been drastic.

The reason for my message to you is to NOT give up hope!  There are success stories with EC patients - and the fact that your husband is responding well to the treatments is wonderful news.  Go do things together - have fun - enjoy life together.

Your poem touched me so much, because you wrote exactly what I feel too.  I'm sure most of us can relate to what you wrote.

But please stay as positive as possible for your husband - and please take care of yourself!

You and your husband and your family will be in my prayers.

Gentle hugs,

Azzie/Pat

I am glad that you found an oncologist willing to do treatments.  I admire you for going and doing everything that you can and enjoying your time together.  We were planning a trip to Hawaii this September to renew our wedding vows on our anniversary but we won't be able to do that now.  But we may go to Destin and renew our vows on the beach there.  He is so worried about making sure that things are taken care of for me and the kids.  He is so worried about making sure that things are financially stable for us. I told him all that doesn't matter.  All I need him to focus on is himself. 

I am positive for him every single day and he doesn't see me "lose it" but I am sure that my coworkers are tired of seeing it.  I am the only person I know that puts on my makeup before I go home for the day. But you do what you have to do. He told me one time after I told him that we would beat this "but we won't, they said even if it goes away, it will come back" I told him I never wanted to hear him say that again.  That the doctors arent' always right, that's why it is "practicing" medicine.  Plus I told him, he wasn't going anywhere because I wasn't done with him yet.

It is wonderful to find a place that I relate to people, I just hate that it is under these circumstances. 
Thank you so much for your encouragement. I will be praying for you and your husband.
God Bless you both!!

Robin

 

 

Robin-I worked for a doctor years ago, and things were always changing and growing.  You were always expanding your knowledge and taking things further, and he always said "that's why you call it a practice."  You reminded me of him.  I wanted to punch the general surgeon who did my husband's emergency surgery two weeks ago (not for cancer) when he told me in presurgery that he hoped I knew his cancer would kill him (even though he's been in remission).  This guy isn't even an oncologist yet somehow sees fit to pronounce a death sentence on someone who's made it over 2 years already.  I refuse to give up my belief that we will make it, although fear occasionally creeps in through the chinks if I get too tired or discouraged.  I think I said it before-I don't really allow myself to cry over it but I do cry easily over other's posts, a song, a movie.  I guess it finds its way out without my getting melodramatic or creating negative thoughts and wasting my energy (which is my attitude about indulging in anything other than positive thoughts 98% of the time).  I think we should all be encouraged by the advances being made with biochemistry.  We are learning so much about the different mechanisms in our bodies, and how they interact and function so we are creating new ways to fight cancer all the time, and some of the newer treatments have fewer side effects and better results.  Just because things are a certain way doesn't mean they can't change.  Although incidences and deaths from EC are on the rise annually, the survival statistics have risen quite a bit in the past 10-15 years.  There is always room for hope, although I understand the challenges faced in fighting this disease.

Hi

I am new to the message board. I have stage 4 esophageal cancer, did well with Oxaliplatinum and 5-FU, last PET showed only 4 to 5 positive lymph nodes. I am now on taxotere.  I recently read the Wall st journal article on the Hutchenson's who are supplementing their son's therapy for renoblastome with several atternative drugs, verapimil, accutane and others. I am wondering if anyone is doing this kind of treatment. I have started myself on verapimil since it does't have many side effects, but am interested in any one else's thoughts or experience. I also plan to be a long term survivor, have confidence in mytherapy, but feel I need to be as aggressive as possible. Thanks, Karen