At that point: clinical trial or hospice

Kathleen808
Kathleen808 Member Posts: 2,342 Member

Dear Friends,
I just haven't been able to write this because I guess it means it's really true.  **** is having a very, very difficult time.  We are waiting to see if any immune therapy trials come this way in the next few days (honestly not likely) or we will be calling hospice.  **** has been at this fight (and he does consider it a fight) for 5.5 years, over 100 chemo treatments, 5 surgeries, too many to count scans and all that goes with all of that.  Despite all of that he has lived so fully up until that last months.  He never really recovered from March and has been getting weaker and weaker since then.  We have not been on our boat all summer and he has only been down to the beach a handful of times.  We are really working on pain control and have it under control most of the time but not all of the time. 
In a way, because of all on here who have gone before us, I think I know what is coming but then again I have no idea.  Family has been visiting and I think we will bring our daughter home for a bit before she heads back to college.  This is a difficult time.  Not sure how to navigate it all but I do know that I want **** to be at peace.  He is such an incredibly brave man and I respect him and love him beyond anything.  I will be by his side as we go forward.

Aloha,
Kathleen

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Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dearest Kathleen

    My heart aches for you both.

    No one has tried harder than **** and no one has been a better caregiver than you.

    I know how difficult your current situation is...wanting that miracle...not fully believing that it will come...wanting to have him pain free...not wanting him to suffer.  The mix of emotions is more than a person should have to endure, but endure it we do because of our love.

    Prayers and hugs to you all.  If there is anything which can be done for you from a distance please just ask.

    Marie who loves kitties

  • Luv2lunch
    Luv2lunch Member Posts: 270
    So sorry

    Hi Kathleen,

    I just wanted to say how sorry I was to read this. I've been following ****'s story for a while now. I don't post much here but do read always. He seems to be such a strong person so this news was very sad to read. I will continue to pray for you two, your girls and the rest of your family. I believe in miracles and will pray that one comes your way.

    Please take care of yourself. We will be thinking of you and ****.

    Sincererly,

    Linda and Miss Ellie

  • Nana b
    Nana b Member Posts: 3,030 Member
    Luv2lunch said:

    So sorry

    Hi Kathleen,

    I just wanted to say how sorry I was to read this. I've been following ****'s story for a while now. I don't post much here but do read always. He seems to be such a strong person so this news was very sad to read. I will continue to pray for you two, your girls and the rest of your family. I believe in miracles and will pray that one comes your way.

    Please take care of yourself. We will be thinking of you and ****.

    Sincererly,

    Linda and Miss Ellie

    Kathleen,  I'm so sorry to

    Kathleen,  I'm so sorry to hear this.   There are trials out there.  Have you called Standord to see what trials they have?  

    Have you tried Cannabis oil? Do you have medical mj?  

    I don't know know where and how many tumors he has; cyber knife, chemoemobilization are they options?  

    I'm just speechless. You are correct, as we see us following other's journeys that have passed you start to think you are going in that same path,  but have to stay strong and keep fighting. Fight any way possible, juice, supplements, prayer, anything. 

    Hang in there and try to take care of yourself, we care about you too.  

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    So sorry about this

    Kathleen,

    Your picture is one that brightens my day! You have such a sunny smile, and I can tell you have the personality that matches it. And for most of the time that I have known you online, your pictures have so often included your dear husband ****. He has looked so athletic and strong, and it's very difficult to imagine him in pain and not thriving. I know it must be tough for all of y'all. I will be praying that a wonderful answer will present itself.

    You have always been such a wonderful, supportive caregiver, so I'm glad you will call in "the troops" if it's no longer possible for you to manage ****'s pain. Hoping they will be a comfort to you, as well.

    You're in my prayers!

     

    *hugs* Love,

    Gail

     

     

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    Kathleen

    It's so hard to read this.  I just feel like we lose someone on here everyday, like we're all lining up and next to go.  I have always followed you and ****.  It just seems so unfair to be so young and get this awful disease.  I know we don't want to believe the inevitable, it just seems too much to take.  I hope he can remain pain free and have a little more quality time with the family.  I will be thinking of you and your girls.

    Sandy

  • coloCan
    coloCan Member Posts: 1,944 Member

    Dearest Kathleen

    My heart aches for you both.

    No one has tried harder than **** and no one has been a better caregiver than you.

    I know how difficult your current situation is...wanting that miracle...not fully believing that it will come...wanting to have him pain free...not wanting him to suffer.  The mix of emotions is more than a person should have to endure, but endure it we do because of our love.

    Prayers and hugs to you all.  If there is anything which can be done for you from a distance please just ask.

    Marie who loves kitties

    Do not know if this can be of any use or not,for ****

    www.ncbi.nlm.nih.gov/pubmed/24943235

    (don't really know what it all means but its rather recent and sounds promising)

     

  • thingy45
    thingy45 Member Posts: 632 Member

    Kathleen

    It's so hard to read this.  I just feel like we lose someone on here everyday, like we're all lining up and next to go.  I have always followed you and ****.  It just seems so unfair to be so young and get this awful disease.  I know we don't want to believe the inevitable, it just seems too much to take.  I hope he can remain pain free and have a little more quality time with the family.  I will be thinking of you and your girls.

    Sandy

    so very hard

    Dear Kathleen, So very hard to read about you and ****. It seems that every day there is more and more pain and heartache here. I so very much hate this terrible decease.

    It breaks up families, causes financial problems but most of all sadness.  In the few years I have been on this board we have lost so many good people. The only thing we have incommon is this decease.

    My heart goes out to you and your family, but most of all to ****. He has been fighting so hard with you by his site every step of the way. If love alone could cure him he would be better.My love and prayers go out to you, remember you are not alone, we are only a mouse click away. Good to hear he is mainly painfree.

    Love to you and family, Marjan

     

     

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    No!

    Dear Kathleen, Dear ****, I can't express the sorrow in my heart. 

    I will pray for that miracle, it could be right around the corner. 

    I hurt as I try to find the words. I can't find the words. 

    God bless, may the miracle trial appear for you both. 

    SUE/TRU

     

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
    At a total loss

    Kathleen,

    Shocking news at the least.  He has looked so virile in your profile picture and the incident on vacation seemed to have resolved.  

    Can not begin to share my personal sorrow at your situation and all that can entail.  

    You are an excellent caregiver and partner.

    <<HUGS>> of Peace, Comfort, and Sympathy,

    Art

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member
    Prayers

    I haven't been around the boards very long, but I have gone back and read quite a few of the posts.  Your support of others and the contribution to the board is invaluable.  My prayers are with you and your family.

     

    Yolanda

  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Thank you

    You are wonderful friends. I know you will be with us as we go forward.
    For the short term, think of us as a hurricane, which should weaken to a tropical storm, comes our way at the end of the week. We don't need any more challenges.
    My sister and bil will be here tomorrow through Saturday. They introduced **** and I to each other 29 years ago. It will be good to have them here.
    It is good to have you here too.

    Aloha,
    Kathleen

  • Semira
    Semira Member Posts: 381 Member
    oh dear...

    ... what a damn disease this is :-(

    Sending a hug from Germany

    Petra

  • ron50
    ron50 Member Posts: 1,723 Member
    Semira said:

    oh dear...

    ... what a damn disease this is :-(

    Sending a hug from Germany

    Petra

    dear Kathleen and ****

                 You know well that we are behind you one hudred percent and that each and evryone of us here would do annything possible to help. I just wish that the sum of the love we have for you both somehow helps to lighten your load. My deepest respect to both of you,,,Ron.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    I am so sorry that things are

    I am so sorry that things are getting tougher.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    I am so sorry that you and **** are facing such challenges

    Whatever the future holds, I really hope there is more time to be spent on the water, enjoying your beautiful surroundings.  And I hope that beauty brings a sense of peace to you both.

  • LindaK.
    LindaK. Member Posts: 506 Member
    You're in my thoughts

    Kathleen, I was so sad to read your update.  I fear I may be facing the same with my husband sooner rather than later.  He has also been struggling these past few months.  I have been strong throughout but this past week or so, reality has set in.  It stinks for all of us!  It sounds like you have a good head on your shoulders but I feel your stress and pain.  I wish you and **** peace, that is what I hope for myself also.

    Linda

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    As a caregiver, my heart

    As a caregiver, my heart couldn't hurt anymore than seeing this kind of news. You are the best caretaker. I pray miracles for you and your family.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    So sorry to read this

    So sorry to read this Kathleen.  I'm hoping you find a trial that give **** more time and better quality of life. 

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    So sorry to read this...

    I hate this disease. It is taking too many of our friends. I pray for better health and absence of pain for ****. I do believe in miracles, so I'll keep praying. maybe you'll find a trial that he can get into. Hugs!

    Lin

  • Dyanclark
    Dyanclark Member Posts: 296
    The fight

    I feel your pain.  Where will this all end.  My husband is on 6th year with no hope of remission.  It seems they will never really find the cure for cancer.

    Hugs from George & Diane