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To all of you touched by the Ec Beast

mrsbotch
Posts: 377
Joined: Oct 2010

Hi

My name is Barbara and I have been on this site approx 2 years. Many of you know me especially Sherri, William and Loretta , Paul61 , Sandy 1943, Tina B, Cindy Collins and a few others.
I lost my husband Vince on Feb 23, 2011. He had the MIE on Feb 25th of 2009 and lost his battle 2 days short of 2 years. Vince was healthy as a horse. A former Vietnam Vet, a former policeman, a non-smoker, a non-drinker, a runner and an exercise nut.
I know when we were facing his recurrence I did not want to hear ANY BAD NEWS. We were in such shock that it recurred since he was stage 2B when diagnosed.

So many people went easy on us as I did not really want to know the real truth about this vicious cancer. AND IT IS VICIOUS. Our surgeon thought they had got it all and Vince was feeling good. So good that we went on a 3 week, 6,000 mile round trip motorcycle trip from Georgia to Cape Breton Island in Canada touring the country of Canada along the way. He did just fine.

Vince went along pretty good for a year with minor problems but in May of 2010 the cancer started to rear its ugly head again. He was losing weight, got food stuck in his throat, the whole 9 yards. BUT he had a CLEAR PET SCAN. How was this possible???
Its because this cancer is so invasive and so sneaky that it literaly hides so that we are unaware it is back.

By Sept 2010 he was diagnosed terminal, had 4 rounds of chemo that brought this once strong man to his knees and was gone on Feb 23, 2011.

The reason I am writing this is because I really want you all to know to NEVER be complacient with this cancer. I know you are not but until you are really in the clear, PLEASE PLEASE PLEASE keep an eye on it. If the drs tell you to watch and wait. DON'T . This may save your life.

I am so saddened when I hear some of the stories about drs telling patients to wait for a scan or hang on for a few months to see what happens. By the time Vince 's recurred it was ALL THRU HIS BODY. He lost 100 pounds and could not even get out of bed. My beautiful husband died because of EC and I really don't want this to happen to any of you.

I only know of 2 really long term surviviors. By this I mean almost 10 years. That is our own William on this site and Bart Frazzitta, from fighec.org. He heads the Esophageal Cancer Education Foundation. Both of these men have dedicated their lives to help save other EC patients as they have survived this beast. I do believe they have both done so much good in helping others.

Sherri and I both lost our husbands to this Beast and I know so many other widows. It is a sad place to be so Please go to the best Drs, try and get the best care, and don't let your guard down.

I read your posts and I hope that someday this site does not have to be here as they have found a cure.
This is the only cancer I know of that takes away the simple pleasures of life like just eating and sleeping normally.

J REED,
My heart goes out to you , and when I look at the others facing this now I am sad.

Know that I really really care.

Barbara

Guigna
Posts: 71
Joined: Feb 2012

Your post really struck home with me. My non smoking non drinking husband was the healthiest member of the family. Our out of shape relatives actually got tired of hearing about his bike rides, he was so energetic, upbeat, positive, and strong. His coworkers loved him and shook their heads as he rode into work in all weather on his bicycle.
This nasty cancer is getting him too. The first moment he felt it he made an appointment with his doctor. It has been a nasty spiral ever since. We're about to start Taxol, but i'm not sure it's worth it. Even with the best doctors pursuing this beast aggressively, we're still losing the battle.
I cherish every day that I can hold him and hug him and hear his voice and see his beautiful face.
Thanks

BMGky
Posts: 666
Joined: May 2010

Delay is such an enemy with EC. Besides the shock of the diagnosis, the brutal treatment regimen taking its toll on the patient and the family, not knowing what to do and when is quite disturbing. I can't tell everyone just how much each heartfelt post has helped me in caring for my husband. There are survivors out there. I personally know of two who don't post. Besides them, this site is the only place that gave me strength. The continued support from the loved ones who lost their husband, wife, mother, father and others is a great gift. It has to be painful to post, but, thankfully, you continue to and by so doing, you have saved many others. BMGky
Caregiver to husband
2 year still NED

Bobs1wife's picture
Bobs1wife
Posts: 153
Joined: Sep 2010

Barbara, you said it so well. Don't mess around with this cancer! My husband's recurrence was also at the anastamosis and by the time it was spotted it had spread to the trachea and aorta. Surgery, and 5 weeks later, he passed away. That was 8 weeks ago and I am still reeling from the shock of how things could have happened so fast. Linda

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Barbara:

I can honestly hear the pain in your post to us. Your story, like too many others, absolutely tears at my heart. We are still waiting to hear when our 'second' opinion appoitment will be. In fact, I'm going to call them as soon as I am done writing this.

I went back to work today, and I cannot tell you how guilty I feel for doing that. My Family Medical Leave is up until either June or July and we must have insurance coverage which is through my employer. Don's company closed about 3 years ago and his benefits are long expired.

When the doctors say to wait for a scan or wait and see what happens - I was thinking it's because they can't see the cancer until it is a certain size that can be seen via CT or PET scan. The surgeon held up the tip of his small finger and said "it has to be this size before we can see it". Is there a blood test that can show esophageal cancer? When the three doctors have told us the same thing (Don is 4 weeks out from surgery) - I'm wondering if there is something else I should be requesting or demanding for Don? If you or anyone else knows of anything - please let me know.

As I stated in my post regarding Don, his pathology report is so rare - however, Don's cancer is contained in a particular region - for how long - no one knows. I read of so many that are living life to the fullest - going on dream vacations, etc. We are not. We haven't really come to terms with what all of this may mean. I choose not to have 'that' conversation until he brings it up with me.

My heart goes out to you and I truly thank you for sharing your thoughts and feelings and your story with us.

Love, Hugs, and FEC,
Judy

mrsbotch
Posts: 377
Joined: Oct 2010

I am so glad that all of you have been receptive to my post. This is such a rough time for many.
Judy if you want to call me please do. My cell # is 706-897-4056.
Yes there is a blood test in the works. I do not know if it is available yet but Bart Frazzatti from fightec.com or .org
Is trying to raise money and awareness about EC.

Please call and we can talk.

I so appreciate all of you. Thank you. Sherri and William are always giving such good advice on things to do.
We are all so blessed to have so much knowledge here.

Take care all of you

Love
Barb

Freida
Posts: 191
Joined: Nov 2011

Judy
I asked that very question about the blood test at our last appointment as I know some cancer survivors (from other cancers) that do have tumor "markers" that show up in blood tests. They told us that some ECs have markers, but that Bill's did not. So in his case a blood test will not tell us anything. So I would ask your doctors about Don's specific situation.

I so understand what you are saying about not living life to the fullest. I feel like we are just marking time right now as we wait for the follow up appointments to which are scheduled for 5 weeks after chemoradiation finished. Bill feels much worse now than he did during treatment and than he did when radiation stopped 3 weeks ago, and not only are we 12 hours away from his cancer doctors, but our beloved family doctor closed her practice in mid December and we are not feeling very confident in the new one. I am dreading the check up and restaging that is scheduled for the 2nd week of May as I don't know where we go from there. And, as you know, our daughter is getting married at the end of May - I am so hoping he will be feeling well enough to enjoy that.

Bill has always wanted to see Alaska and I keep wondering if i should book us a cruise so that he can see it. But it is so hard when you just don't know what will happen next week. And like you, I hesitate to have "that" conversation unless Bill brings it up.

I hate this cancer and what it is doing to all our lives.

Love, Hugs, and FEC with bells on it
Freida xx

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

I so rarely check this discussion board anymore because it's just too painful. To see all the newbies and read the stories is just heart breaking. Some of the stories (also shared on facebook) like Jimbo and Melinda make me smile but mostly it's just pain.
I did notice your post Barb, and had to check in. Thank you for sharing your story and being here to help others.
All I can say to Judy and Freida and the rest of you who's loved ones are battling this horrible disease is just try to live each day. Enjoy the good ones - there may be many of them yet to come, but none of us knows for sure. Plan those trips, have deep conversations and try not to let this cancer control every fiber of your being. I know that's not easy.
As a caregiver, you can get so caught up in surgerys, stretches, feedings, drugs, pain management, appointments, and yes - even whether or not their bowels are working, and it's so exhausting that it's easy to forget to be a loving partner. I know I was guilty of that some days and I wish I could have some of those days back. I urge you to love deep and love hard for whatever time - days, weeks, months or years you may have together.
Hugs to you all, Rita

gertmcbride
Posts: 4
Joined: Apr 2012

I have just joined and as I read everyone's story I feel like I'm reliving my husbands battle and mine as his caregiver all over again. God Bless you for sharing. And my hug back to you. Gertrude

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

Duplicate post...sorry

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Freida, If you decide to book an Alaskan cruise you probably will be departing out of Seattle, which is where I live. We would be honored to show you and your husband around our little corner of the world while you're here either before or after your cruise. Just PM me and I'll give all my contact info.

I still have these nagging doubts about my cancer and if I'm really cured or not. L know intellectually that I am but sometimes I am not so confident. If I loose a couple pounds I worry, If I;m not feeling 100 percent and full of energy i worry. Even though I was diagnosed at the earliest possible detectable stage and had surgery with in less then 45 day of diagnosis and, they didn't find any cancer in my pathology just high grade dysplacia and a couple of "cant rule out cancer" cells I still worry. I was told I'm cured and don't need any follow up scans scopes etc... I feel very blessed on the one hand and nervous on the other. Like I'm waiting for the other shoe to drop.

Dave

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Dave,

As Nick's caregiver through this rollercoaster hell, I get what you say about waiting for the other shoe to drop. Nick was diagnosed as T3N1M0 and had surgery 7 months ago. He is (we are) doing well. :)

But....

Every cough, every ache, every sigh or unusual noise - my heart stops. My 1st thought is "oh my, is it....?" There may never be a day when I don't have the "oh my, is it....?" thought first, but I hope that's wrong. I truly want to live - I want NICK to live - without having to fear a recurrance with every ache or pain.

So here we are - keeping our shoes tied tightly, so one can't drop!

{hugs} to you!

Terry

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Frieda,

There isn't a guarantee for any of us - caregivers included - for a tomorrow. But I live in an area where there aren't many buses, so even though I might "be hit by a bus tomorrow" - I think I'm safe in that area ;)

But still - like everything in life - we wait for a good time to have kids, start a new job or business, take the dream trip, etc. But why wait? The perfect time never seems to come. My grandparents and my parents both waited until their retirement years to take trips to Europe. Both my grandfather and my father have experienced knee problems as they aged. The (painful) walking demanded of them during the trips took a bit of the pleasure away.

Find 3 days in a row when Bill is feeling good. That will give you the sign that he can have several *good* days and would enjoy the trip to AK. The old cliche - there is no time like the present - is true here.

I am So Glad to see you again! and yes, FEC with big brass bells!

Love & {hugs}

Terry

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

Barb, So good to hear from you. I have heard of so many reoccurances of EC, I can never completely be at ease. After my next ct scan I will be at my five year mark and will only be tested once a year. I like to come on, because as time has passed I can't believe I've come this far and I want all to know that life can return to normal. There is some differences in lifestyle, but for me, the good has outweighed the bad. My journey has brought me closer to my Lord. I experence everyday the promises he gives to us. He promised he'd never leave me and He hasn't. I thank him for the peace he has always given to me, even in my darkest valley. I'm thankful I can lift you and all my friends up in prayer and he hears me. We just don't always get the answers we would like to have.
You and some of the others do so much research and are willing to share the things you find out. I appreciate it so much.There is so much to learn about the beast.Please keep us up to date of a possible connection between EC and agent orange.
It's past my bedtime and I feel like I'm rambling so I guess I need to go to bed,
Sandra

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

is that it seems to be that EC will reoccur in (as far as I can tell) in just about all cases. But what I tell everyone is that I have somewhere between 3 months and 20 years to live (I mistyped and wrote "love" and almost left it. That's a great mistake to make...), but I could walk down the street and get hit by a bus tomorrow, so I'm working on that 20 years thing.

As Woody Allen said, "I'm going to live forever, or die trying."
--Jerry

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

Barb,
Thank you for this honest and from the heart post. I am one of those 2 year survivors that is coasting along quite well. Class of 2010, I had surgery (IL) followed by 2 months of aggressive chemo. I have had clean scans and proceeding with my life, normally. Your post makes me pause, should I be preparing for a recurrence? I am age 59 and nobody but God know what lies ahead. We are all here to support each other but the reality of this cancer is what it is. Cruel. My doctor said I could go a year without a scan. maybe I should ask him to keep a closer eye. I am going to pray and consider your thoughts in my future plans.

Gerry

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

Barbara:

I had a clean, NED 6 month post-op appointment with my surgeon a couple of weeks ago, which was of course a huge relief. As we were finishing up he said I should set up my next CT scan and appointment for this time next year. I asked him why we should wait a year, and he said if I want to come back in 6 months that would be OK with him, so of course I scheduled an appointment for October.

He’s a very experienced surgeon who has done at least a couple of hundred Esophagectomies, including (at the time of my surgery) over 125 MIE’s. He trained at UPMC with Dr. Luketich, and I have complete faith in him and Massachusetts General Hospital, which is a major cancer center and a teaching hospital. But when he said he’ll see me in a year I immediately asked myself, “Why wait?” From everything I’ve read on this board for the 8 months I’ve been on it, including your recent post, this is an evil and sneaky cancer and I don’t want to give it a chance to gain a foothold, if it does come back. His reasoning, based of course on his experience, is that since I was early Stage 1 when he operated and this scan was clean, the cancer probably never got a foothold in the first place and he most likely removed it all. But from my perspective I have to ask, “Probably?” and “Most likely?” What the hell is that?

I love and I take your advice to never be complacent about this beast. I may or may not feel “in the clear” after 5 years, but I doubt I will until then. Your advice is so appropriate, and since my diagnosis I’ve been kind of like the guy who quit smoking and goes around bugging smokers and telling them they should stop. Several guys (all men), when they heard about my diagnosis have told me they either have Barretts or have had persistent heartburn and/or GERD for years, and I practically yell at them to GET SCOPED! One friend even told me he’s had Barretts for almost 20 years but hasn’t had a scope for 6 years, I think because he’s afraid of what he might hear. I got rather graphic and described what the end game is like from EC, and practically pleaded with him to get the scope done.

So Thanks for the reminder to us all. I’m so sorry for your loss, and maybe someone who has been complacent up to now will heed your advice, will get more aggressive about their disease, and will not have to go through what you and your husband did. All we can do is try…

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

gertmcbride
Posts: 4
Joined: Apr 2012

My heart goes out to you and your family for your loss. I have been dealing with my husbands ec since 2010. I'm am still learning about EC. My husband is in remission now but there are still complications that recurring. I lost my mom to multiple mylomia in 2007 and my father told me the best way to fight something is to know all about it. I thank you for your compassion and bravery, and your willingness to reach out and help others. My husbands ec was diagnosed as squamous cell staged as t3nxmx. But from everything I read and the location of the cancer it should have been the other kind of esophageal cancer andenocarcinoma. Cancer is sneaky and very unpredictable and the answer i can get and the more I stay on top of my husband's cancer the better chances of him surviving this. If there is any info you could pass along to me I would greatly appreciate it.

ECcaregiver
Posts: 3
Joined: Jul 2012

Hello Barbra

I am new to this type of blog. My husband was diagnosed with EC in 2003 having Right Radical neck surgery. You are so right. This is a devistating cancer. After his sugery & chemo and radiation I thought it was the end. By the grace of God he make it and is still in remission as of July 2012. I am scared every day for him and I know this weighs on him also. I would like to know if you have herd of any type of class action suit against the VA for not allowing this type of cancer to be put on their list.

I do not know how to use this site and will not know how to find your reply. I guess I will just keep looking for your name and see if you reply. Thanks for listening to me.

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