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A Quick Update

rose20's picture
rose20
Posts: 282
Joined: Jan 2011

I did see Jr on Friday and he was sitting in his chair listening to his gospel records.

I was surprised to see how much better he looks compared to what he looked like in the hospital.

His eyes are more clearer and wider and he talks with more strength.

But he is in pain 24/7. He held off on taking any pain meds until after we left.

He went today for his blood work and he has to have a blood transfusion tomorrow.

Will post more as soon as I can!!

Praying for you all always!

rose20's picture
rose20
Posts: 282
Joined: Jan 2011

Jr. had his transfusion but this time it doesn't seem to have helped that much. He is still sleeping quite a bit.

For some reason they have to wait until next Wednesday for the results of the CT scan.

A couple days ago marked the "one month to live" the doctors gave him.

He is still hanging on.

I am just so thankful for the precious moments God let me have with Jr. I was able to touch his hair and kiss him, tell him I love him.

It is like we are walking on egg shells, every time the phone rings you wonder is this the call.

My 91 year old mom spent the weekend with us last weekend and she knows in her heart that outside of a miracle from God her son doesn't have much longer.

It breaks my heart to know that he can longer taste food any more. Everything is through a feeding tube.

My heart goes out to all of you who are going through this.

Makes you realize the most important things in life and to never take anyone for granted.

It's not the material things that we accumulate, it's not our position in society, it is each other. Loving one another. Helping each other.

May I spend whatever days I have left here on this earth being a help to someone.

William and Loretta may God continue to bless you two as you have dedicated your time to help others with this horrible disease.

I know many of you are praying for my family, how can I thank you for this.

I am praying for all of you. I can't remember names but God knows who you are.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

I think of you often. I'm also thankful for each day I have with my Dad. It does put things into perspective. The important things, the REAL IMPORTANT things, come to the surface. Thank God for the chance to see it before it's too late. Your family continues to be in my prayers.

Best wishes for Ray!

~Jayme

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

Rose,

You and Ray continue to be in my daily prayers. I hope Ray will be free of pain and at peace during this time. It must be very difficult to live each day "on the edge of your chair". I am sure Ray appreciates your love and support during this time.

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

rose20's picture
rose20
Posts: 282
Joined: Jan 2011

Jr. has not been feeling well, he is sleeping most of the time, now he sits with a heating pad on his back because the pain is now between the shoulder blades. He is in constant pain.
You want to just lash out at something and so I get so angry at the cancer. I HATE CANCER!!!!!!!!!!!!!!!!!

It's hard to believe what one disease can do to the human body.

Forgive me, I feel so ashamed at times pouring out my woes here when you all are going through this same ugly disease.

The only good I can see in this disease is that you have some time to prepare, to tell your loved ones what needs to be said.

With sudden death you don't get those last hugs and kisses and touches. This is how me and my husband and children were left. No last anything with our son.
He was here one moment full of life and the next he was just gone. Vanished. So the longing for that last touch, last kiss, last "I love you's" are forever with us.

So if there is any blessing at all in this disease, it is that you all get to prepare for the worse, you get to love on your loved one and say all the things that need to be said.

With Jr. I did the things I so wished I could have done with my son. I touched his hair and just caressed him, held his hand, prayed with him, cried with him, kissed him again and again, told him how I loved him.

Watching my brother sit there and suffer day after day is a suffering in itself.

I just can't wrap my mind around the fact that he can not swallow, not even saliva.

"Dear Jesus, have mercy."

Yes, Paul you said it correct, living "on the edge of your chair."

Even though all of this is taking place no one has brought up the subject of preparations for death.

I so wanted to have that chance to do so with Jr. this last visit but his wife was constantly by his side and she will not hear of that kind of talk.

I want to ask him what are his wishes.

Please pray if it be God's will that I will have this opportunity, if not me then someone there will bring this up.

May God continue to fill you all with His strength for the road you have to journey.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

It is a difficult time now. Watching someone suffer cannot be easy. I hope you can muster up the courage to talk to Ray about his wishes. Don't let the Beast win in death, too. His wife may regret not getting everything on the table. Stay strong. We can do all things through Him who strengthens us.

Prayers for Ray always.

~Jayme

rose20's picture
rose20
Posts: 282
Joined: Jan 2011

Pray for ray, we got the test results..his blood work is good, the test scan showed no change. Thank the Lord...it has not spread anywhere else..the doc is so amazed he is doing good..they gave him one month to live, and he has surpassed that yet again...we are Praising God. Ray has food or meds or iron put into his tube every two hours..it is hard thru the nite but we manage.. Keep praying....

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Glad the results were in Ray's favor. Truly a blessing. The prayers never end. God is good.

~Jayme

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

Never feel ashamed of "pouring out your woes". All of us, caregivers and cancer survivors (and as long as we ain't dead, we're survivors) are here to support all of us. Pain shared is pain halved, and joy shared is joy doubled.

We all hate this horrible disease, and we all pretty much know what you are going through. We also find that cancer is harder mentally on caregivers than it is on those of us who have cancer. Our love and prayers go with you and Jr. It sounds like his wife in denial, and that when Jr. dies, as he inevitably will, that her whole world will crumble. Don't really know what you can do, except try to find a time when you can talk to him privately.

Also, remember to take care of yourself. You can't do anyone any good if YOU fall apart. And you'll need to have yourself together to help your sister-in-law when the end finally comes.

--Jerry
Stage IV T4N1M1
Mets to the mouth, chest, back, and a couple of other places...
Diagnosed Oct 10, 2011.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

I just want you to know how amazing you are. All you have been through... and so much spunk left in you!! I love reading your posts. Thank you!

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

Pain shared is pain halved, and joy shared is joy doubled.

That's deep. I love that.

Freida
Posts: 191
Joined: Nov 2011

Yes Rose, I agree - don't EVER feel bad about pouring out your pain and grief here. This is one place you can feel safe doing that because we all understand.

And Jerry "Pain shared is pain halved, and joy shared is joy doubled" - love that also. So true.

rose20's picture
rose20
Posts: 282
Joined: Jan 2011

Thank you to all of you for your encouraging words and support.

My heart goes out to each and every one of you.

A friend of the family who we have known for years and years was diagnosed so many months back with esophageal cancer stage 3.

He had the ESOPHAGECTOMY June 5 of this year at Moffit and they said he is now cancer free.

But now his brother who just came out of the hospital just recently from a surgery with his heart and being out only a few weeks had to go back into the hospital and they found he has kidney cancer that has spread to his lungs.

Seems like cancer is effecting everyone these days.

We just never know what is gong on inside our own bodies.

Also, I just want to add that I see Loretta & William's post has been removed.
I can't understand why.

I am a Christian and I am not ashamed of that fact and as a Christian God is the center of our lives. We Love Him and respect Him.

But we Christians need support also when we are facing troubled times.

I thought this was a board to just offer help and support to the hurting no matter race or religious background.

This is how we comfort one another, through prayer and Bible scriptures and speaking of the hope of heaven.

I understand there are many not of my faith and they have the free right to say whatever they want here.

It seems like believers in Christ have no right to speak of what they believe.
Why would we believe in something or Someone and be expected to
not speak of it?

I don't believe talking of God is offensive and to those who are offended just can skip over those posts.

But I believe everyone here respects each others pain and suffering regardless of their beliefs.

I am thankful to anyone who can give comforting verses from the Bible or speaks of an eternity in heaven and offer hope to those who have none.

I am thankful to those who don't believe as me but yet they reach out to me with a compassionate heart.

I'm just so sorry William and Loretta's post was removed.
Just doesn't seem right to me on a board that is to offer support and compassion to the hurting.

Maybe I am jumping to the wrong conclusions and this is not even why the post was removed, if so I do apologize to those who monitor this board.

But there are people who are dying and they need all the hope they can get and when medicine has failed then what is left? But God. Why can't we offer that, give them something to hold to.

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

William and Loretta,

I haven't been on the Board as much lately because of so much going on in my life --- not to mention a Hurricane in New Orleans and you guessed it my Mom refusing to leave her apartment for a few days. So I worried and prayed and thankfully she was okay but without power for 4 days and pretty miserable in summertime muggy heat without fans or AC. I thought you would appreciate that story because things just don't seem to change do they --- she resisted getting help away from the local doctors because she didn't want to leave home and delayed and when she finally relented it was a little too late. And today over a year later I am still missing my dad terribly.

Anyway, I say that because I am astounded that the CSN Board is still removing your posts, I had noticed awhile back someone had asked a question about God or Heaven to the group here on the EC page (can't remember the specifics) and that post was moved to a "spiritual page or something". I think that person wanted the EC board to comment because they felt close to the group --- it wasn’t a random question. Perhaps what the folks who run this site don't understand is that the members of this Board, and I would imagine others, form a unique bond that transcends the miles, the fact we have never met and we open up about things here that we might not even share with a close friend or family member --- because they really don't understand and what we understand is no one really understands. But here on the EC group, among the patients and caregivers and others, we do share at a fundamental level the unrelenting and difficult battle you take on with a diagnosis of EC. I am not trying to diminish other cancers but this is different and the options are drastic and don’t always work. With other cancers and a Stage III diagnosis you may have an 80 or 90% chance --- with EC they say @20% last five years (and I know the numbers are improving with increased awareness and education but still this is a very difficult cancer to treat). On this board we have created a family, and those who reach out share personal emails and phone numbers and talk. We have created a family, a group who will educate us, provide ideas and experiences, pray for us, challenge us, encourage us, cry with us and try to be a comforting place to retreat to on a day when we don't think we can take it anymore.

So many times during my dad's journey I would get so frustrated at the cancer, the doctors, my dad, my mom, my family, my job --- you name it I would get frustrated and wonder how I would get through the next roller coaster. But when I came on this site it was a refuge and an encouragement on all levels. And I want to make sure that folks understand I wouldn't have traded the time I spent, or energy I invested over the last two years of my dad's life. As Sherry has often said we packed years worth of living into the time we were so lucky to get once he was diagnosed.

Without your support, and many others on this board I don't think I would have been as good an advocate for my dad. And I think it helped me to cope. And so if anyone posts something I might not entirely agree with I feel free to speak my mind or I might choose to ignore it, but we do live in a free country last time I checked. I think one of the things that is lacking in our society is the ability to have different views --- respect them and them focus on the things that bind us, the fight we are in and the comfort and support we provide each other. I know that is an ideal view and there are people who do get offended from time to time --- and to them I say okay can we get along because as a group we are so much stronger together than alone.

I hope you stay on this board, and if you don't you better email me and tell me where to find you! LOL or I'll finally have to come to VA Beach and we will have to try and have a family reunion of the CSN families. We have lost so many good people on here, and we have seen many succeed --- we can all pay if forward but only if we have a voice. In many ways you are the heart and soul of this Board and provide countless hours of not just research but also inspiration as a long term survivor.

I am going to send this to the CSN folks as well – so if I disappear you know where to find me.

Much gratitude and love to you both.

Cindy

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