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It's a very difficult and sobering time here on the forum now...

Bermudagirl
Posts: 120
Joined: Jun 2012

I'm sure that most of you who have been around for awhile are used to the ebb and flow as patients and caregivers come and go, but for those of us who are still newbies, I joined a scant 3 months ago, this is a difficult time. Reading about Judy and Don's situation has brought me to tears, learning of other more recent deaths is heartbreaking. Yet I still log in each and every day, multiple times a day, as I feel this is a place that will support me. I've had friends say, if it upsets you, stay off. But I can't. I'm one of those people who needs to be in control. Not to say that we ever are in control really, in any part of our lives, especially with cancer, and EC no less! But what I mean is that I feel that knowledge is power, and as heartbreaking as it is to hear about Don's battle with the fluid, and all the other symptoms that might occur, I feel at least as if I am armed to go into this battle. I'll know what to look for down the road.

What is so scary to me is that you can do everything right: get through chemo and radiation, have the surgery, get clean scans, and then BANG its back, with no rhyme or reason. That is truly truly terrifying.

I am on this board pretty much solo. Dave knows of course that I post, but he doesn;t read any of it. And I don't blame him. He knows the odds, he knows what he's up against, and we don't really talk about all the details. They would overwhelm me if I were the patient.

I try and focus and encourage him with the good things. As an example he was finally able to eat some "real food" last night! Not a lot, but its a start. And he told me he now feels about a 4 or 5 on a 1-10 scale where 2 weeks ago he was most definitely a '1" and that is being generous!

We also were able to reconnect last night as a couple, something that I have dearly missed, but he has just felt so bad that it was not even an option. I alos told him that I miss just our closeness, just to be held. When you feel so bad I know its hard, but the caregiver needs just the comfort of touch.

Surgery is October 8th, and we both are going into it with the desire to kick some &ss! He's been a trouper so far, and I think he'll do well. But again what scares me to death is that it's all just one big un-known. Hopefully he'll be like William and survive many years. But there have been so many good people here that didn't make it. And that saddens me to no end.

Thank you for just letting me get these thoughts off my chest.

Each and every person on this board is a hero to me.

Sandy

Aussiegirl76
Posts: 15
Joined: Aug 2012

You have articulated my thoughts exactly. My dad is scheduled in for sept 27th surgery. I know it's different when it's your partner and my heart really breaks for you. I find this hard enough watching my parents go through this, I can't imagine it being my husband. I too am terrified of the way this disease recurs.
Dad finished 30 radiation treatments and 3 months of cisplatin and 5fu about 4 weeks ago but has had 2 bouts of pneumonia and been in hospital a lot. Now he's fighting back and getting stronger but taking lots of pain meds so he can eat. The next few weeks he has ct and pet scans, appointments with each of his doctors and laparoscopy test before final decision about his surgery and treatment plan. Are you embarking on this testing phase too? Dad is not worried about surgery but is very anxious about these scan results.
I find it hard reading the stories of Judy and don, and others. But i need to know what may happen so we can help dad fight with every ounce of knowledge and medical help. I also take some peace that these board members seem so courageous and strong and keep supporting each other.
I am the kind of person who needs to know all the risks and nitty gritty but then hopes for the best, knowing what the worst could be. Know your enemy and hit it head on. My family and husband are different and only want to think on the bright side. So this forum is so important to me. I have been able to pass some really important information onto my parents regarding dads fight with ec (filtered and in a positive way, but it is making a difference). And it provides me with huge relief that I am not the only one watching a family member battle ec.

Thank you to everyone who shares their advice, help and stories. And to those who have lost a loved one but continue to help others, you are making a difference to others, and I am truly grateful.

lenlee65
Posts: 47
Joined: Aug 2012

I too am a newbie to the site and as of today a survivor, cancer free, eating okay but as all of us who have or have had EC, each day has issues of some kind. I am glad to see these 2 posts because I was having some difficulty reading some of the posts because others are not as blessed or fortunate as I have been. But this morning I was talking to my ex-wife who is still one of my best friends. I was telling her how difficult it is sometimes to read the posts and wondering if I should just stay off the site. She pointed out to me just how blessed I am and also that I do have some experience with EC both treatment and post treatment and I should feel honored and privileged to be able to share what little advice or encouragement I can. So to everyone I will be available to offer encouragement, prayers, cheers, tears, or just plain talk. This cancer is a particularly agressive type, does reoccur without warning and if you survive it, is still a life changer in so many ways.

Aussiegirl76
Posts: 15
Joined: Aug 2012

Lenlee, we need survivors on here. So we can have hope.

lenlee65
Posts: 47
Joined: Aug 2012

Gonna stay on the site. This form of cancer is really agressive so if you are diagnosed, get more agressive in fighting it. In my case I give a lot of credit to the Gastroentrologist who found the cancer when he did a Endoscopy on me. He set me up with a CT scan the next day, had me referred to my oncologist that day with an appt in 2 days. The Oncologist had me set up with a PET scan within a week, a J-tube in within 2 weeks and started on Chemo/Radiation 10 days after the J-tube was put in. During the Chemo/radiation therapy I thought maybe they were really trying to kill me because it is really rough but I made it and then survived the surgery which was really rough. Guess the point I am trying to make is you have to fight. You have to be willing to outlast EC, to put up with the pain, nausea, etc and Never Ever Give Up.

lenlee65
Posts: 47
Joined: Aug 2012

Yes 10 yrs is very encouraging. I noticed earlier today that you or someone recommended a diet published by UPMC. I actually printed out that diet and took it to my surgeon after my surgery because he had absolutely no advice for me about what to eat and what not to eat. Don't know if he will pass it on or not for sure but I think he will. Dr Aru is a very good and very caring Dr. One of those Nurses don't like him but his patients love him kind of Drs.

On a personal note, my youngest step daughter Patti lives in Virginia Beach, her husband is recently retired from the Navy. And I spent almost 4 yrs at Little Creek back in the 70's before I got out of the Navy. Had some good times there and some bad but mostly good.
I was there during the Virginia Squires era and saw Dr. J play as a rookie. Well enough of the reminiscing from an "old dude". I too am a born again Christian and appreciate the fact that you are not afraid to let the world know your beliefs. I just hope that talking about this to you does not cause this post to be deleted.

Nice to meet you William, talk again soon.

Len

Aussiegirl76
Posts: 15
Joined: Aug 2012

Thanks for your welcome and for checking if i have questions! I have been reading older posts and found most of my questions answered so far. It's a lot to absorb and process but I have learnt a lot in the 3 months since dads diagnosis. At the moment dad is in good spirits and relatively good health. We are just looking ahead to his pet and ct scans and then surgery. I am not exactly sure what his stage is but the cancer is localized but large, with no node or mets at initial diagnosis. And its adenocarcinoma with barrets esophagus. Both my grandfathers had ec too. Dads was picked up after trouble swallowing. Should have been getting regular endoscopy tests given his acid reflux issues. Irony is he had every other health check for 63 yr old male, last year. Missed the most important one.

I noticed a few old posts about her2. Is it worth getting this test done and is it done before surgery or do we request test to be done with pathology tests from surgery? Does identification of this gene help treat ec?

Thanks again for being here. I don't imagine it's easy watching all the newbies and their families fight this battle but you are making a difference.

Claire

betsi7
Posts: 22
Joined: Jun 2012

My sister-in-law was in from Minnesota and read one of your posts that I had printed out and found it very helpful and encouraging. We are regrouping from the loss of esophagectomy option day of surgery--but it helps enormously to not feel alone on this ride. I consider each person's post (sad or happy) a huge comfort.

Sally.L
Posts: 38
Joined: May 2012

Hi sandy,
So glad to hear that Dave is starting to eat and feel better. Paul was feeling great by the time surgery rolled around. After months of relying on the j tube, he stared eating everything in sight. He gained 11 pounds between finishing chemo/radiation and going into surgery. He was able to have MIE but it was still 7 hours of torture for me. Doctor says he is doing great though. Hang in there.

jaycc
Posts: 131
Joined: Jul 2012

Glad to hear eating is starting, and hopefully Sept will continue to work up your scale.

Simply put - The board, with sadness sometimes and with great positive messages, either way helps me with the simple fundamental - "I'm not alone, others are out there"

tmcjay's picture
tmcjay
Posts: 40
Joined: Jun 2012

As i sit here and wonder how to put into words how it feels to be an ec survivor it occurs to me, that with this cancer, I don't really know if I am a survivor. I am fully aware that at this moment , this vengeful beast could be coursing through part of my body that has not been scanned and how would I know. I am dealing with kidney cancer as well as this ec beast, which by the way, is becoming a more common phenomana and they don't know why. Both my cancers , are primaries ,so neither has mets. I am just now waiting to go in for kidney surgery to remove the diseased part of my kidney which was diagnosed over a year ago now with no treatment. They had to focus on the ec first, I had surgery 1 year ago, and chemo /radiation afterwards, and was not strong enough for the kidney surgery. Strangely, because the kidney cancer is low grade and not the horrible beast that the ec is I sometimes forget that I have it, and I think well wouldn't it be a b$%tch if I died of the tortoise and not the hare. Anyway, I consider myself lucky most days that I was a candidate for ec surgery because at first they thought the ec cancer had moved to my kidney and I was not a surgerical candidate so I lived in that zone of there is nothing we can do for about two weeks. Since then I try to be grateful for all of the time I have had since then , and for whatever time I will get to have in the future, but as everyone on this site knows, this way of life is not for the weak hearted. It is true of anyone who has had cancer I think, but with the high rate of reoccurrance with ec it makes it that much more so. This site is calming for me, because it is the only place on earth I can go where there are people who understand. Our caregivers are heroes, but those of us who live with this disease KNOW how the others feel. I am so lucky to be Stage 3 ec with kidney cancer. What other place could I possibly say that and mean it. God bless us all..

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

I admire you, tmcjay. You have such a sunshine of a personality and outlook. That will take you a long way, keep shining!

mmr19
Posts: 88
Joined: Feb 2010

Not knowing if, but when it will strike again is what's scarey for us.

My husband (stage IV) has been receiving treatments ever since he was diagnosed in Dec 2009. His adrenal gland was affected, as well as a nodule on his lung. Those areas have since shown to be shrunk out of site and more normal looking.
His Dr has not declared him 'in remission' or NED. After his scans every 3 months, Dr just says "No progression." And continued with chemo since it seemed to be working at keeping the cancer at bay.
After his August scan last month, however, Dr said it was time for a chemo break....3 months. Will scan in November and see what's up.
We are worried though. What can happen in 3 months time with no treatment?
I know his body needs the break from the cumulative effects of chemo, but it's still scarey.

Marta

monica_sss
Posts: 57
Joined: Dec 2011

I have felt some tough losses through this board, the many caretakers that have posted rest heavily on my heart. And then there are the victims themselves that show such charisma and strength (Eric - chemosmoker and Sam - Sangora) that have since passed. This EC is so awful in the sense that it can progress so quickly before you know that anything is wrong.

I think that your feelings are very normal. I want to do more for awareness so that the statistics can curve in the right direction. Keep the faith, keep communicating, and continue to counsel those affected... I guess that's all we can do.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I have debated with myself which is worse. Having EC, treating it, rescan with NED results, then have it reoccur 1, 2, 6 months, a year later vs. having it and the scans not turn up NED. I remember my mom never getting rid of her EC and others were posting NED messages. My hope at that time was for mom to have chemo, rads, and be declared NED, going home, resuming her life and yet expecting it to come back. That was my plan. It didn't work out that way.

If my plan had gone the way I planned, how devastating would the recurrence have been? In retrospect, I think it would have crushed us all.

I think that the NEDs may be true for the EC but false for cancer floating around elsewhere in the body waiting to latch on to a vital organ like the liver, or ?? I wish I knew.

I see EC patients on this board who are still cancer-free after years of the initial diagnosis. That sort of tells me my thoughts are wrong about it really never going away. I know I'm rambling. I've just had questions in my mind about this and had a fear of posting my thoughts on this forum.

Maybe it all boils down to hope. We should never ever lose hope. I like hope, but I like real reports from doctors too. Don't kill my hope, but give me the facts too. I'm nuts. I miss my mom. I wish my plan and worked and that right now she'd be home, happy, and NED.

tmcjay's picture
tmcjay
Posts: 40
Joined: Jun 2012

You're not nuts. I am so sorry about your Mom. I am close with my kids and worry how they will manage if/when I am gone. Speaking as a Mom, your Mom would want to know that you are o.k even though you miss her so much. I have read your posts and I know that you are a wonderful daughter.

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

Ginny, As an almost five year NEd stage three survivor , I am still in disbeleaf. Why me? I have learned to live and enjoy one day at a time, but when ever I have a little problem ,the first thing I think of is reoccurance. We all know what a beast EC is and it doesn't want to die without a fight, but we on this site are fighters. I actually look forward to the various test just for the reassurance all is still well.

I'm sorry your pain is still so raw. Our mothers are truly our best friend and I miss mine so much. It's been twelve years since she left,and we've had several babies born . I talk to her about them. She would be so proud!

Do you think Mom would like to ride beside you in the Vette?

Sandra

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