I feel so different

VivianLee5689
VivianLee5689 Member Posts: 546
in Head and Neck Cancer #1
I love coming to this site because people are truly my friends, but lately I have felt out of place. Yes David has head and neck cancer, but the plasma cell leukemia is ruling our lives right now. The doctor came in today with a new chemo regimine for after Christmas and it doesn't include Cisplatin any more so none of the chemo agents will be targeting squamous cells. I asked the doctor and he said David only has a 10% chance of dying from the head and neck cancer in a year, but will most certainly die from the leukemia if we don't focus on that. I read everyone's posts and I am finding I am having a harder time replying since everything went off course. Yes he had stage IV BOT cancer, had the davinci robotic surgery to remove it. Didn't have a neck dissection, but had a lymph node removed. Only had 14 radiation treatments. So I often don't feel I can give advice, because our experience has been so atypical. Everyone has been so helpful and supportive to me and I don't feel like I'm doing my part on this site. I just wish things were different.
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Comments

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #2
    Hi Vivian..
    based on the rarity of your husbands cancer I would imagine there is not a forum you could go on, correct? And since we consider you family and understand your situation, you have no need to feel you do not give back. In fact I would say you have given us plenty. You and David are a "love story" in action ....it is refreshing and heart breaking at the same time...and we feel close to you....

    Your love for David and your strength as well as David's strength do give back more than you can imagine....I just feel bad you have no forum with David's type of cancer you can go too (assuming I am correct).

    Best,

    Tim
  • Vee1
    Vee1 Member Posts: 59
    #3
    Let me just say...
    you have no idea how important you are to me. I read your every word and you teach me. You remind me of what really is important. You mentor without knowing it. Believe me...you ARE doing your part on this site.

    Never doubt that for one minute.

    Sometimes the advice a person needs is not about a chemo-radiation-surgery treatment, but about love and life.

    ...And that is what I learn from you.

    Thoughts and prayers...
    -V
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #4
    Tim6003 said:

    Hi Vivian..
    based on the rarity of your husbands cancer I would imagine there is not a forum you could go on, correct? And since we consider you family and understand your situation, you have no need to feel you do not give back. In fact I would say you have given us plenty. You and David are a "love story" in action ....it is refreshing and heart breaking at the same time...and we feel close to you....

    Your love for David and your strength as well as David's strength do give back more than you can imagine....I just feel bad you have no forum with David's type of cancer you can go too (assuming I am correct).

    Best,

    Tim

    correct indeed
    No one seems to know anything about this cancer. The leukemia forums don't get it, the multiple myeloma sites, most have not heard of his cancer. I don't have anywhere to ask questions, even the doctors don't know much. Our oncologist went to a international conference just to get some advice on Davids treatment. I was checking the bone marrow transplant register. MD did 231 BMTs last year and only 4 were plasma cell leukemias. Most likely those were secondary late stage multiple myeloma patients. There was only one plasma cell leukemia transplant done in Kentucky. Talk about feeling like an alien. Even in the BMT unit of the hospital we are aliens. We have had at least one nurse not know how to use Davids PEG and got meds all over the bed. They also weren't prepared for his extremely dry mouth and stringy mucus. The nurses have told us he is their first plasma cell leukemia patient. So I often have given the nurses information on both of Davids conditions. Its scary when I know more about what they are working on then they do. I just don't want to bog down the forum with my random problems. This is such a great forum and I guess I just want to be able to give back in some way. Thanks Tim
  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    Tim and V said it all....
    Your "giving back" comes from a different place than chemo and rad treatments...it comes from the heart...the care and devotion to a loved one. Don't be so hard on yourself, Vivian...you are tucked deeply into our hearts...minds....and pockets....and there you will stay.

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Vivian, Vivian, Vivian....
    LOL, you aren't expected to give back, it's an unconditional relationship we offer you.

    You "give", by allowing us to offer you support, thoughts, prayers, and sharing...

    When those times come that you can share something, you do.

    Just concentrate on you, and your family right now..., we are OK, we want you to be OK also, along with your beloved hubby.

    You are doing your part, you help us to help you, which also helps others....

    Some of those others might just be people that may not be comfortable putting it all out there like you do...

    So they can get answers and support through your posts and replies...

    So in that sense, you are giving back, though you might not have even realized it...

    Best,
    John
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #7
    welcome always
    Vivian,

    I’ve never met a more compassionate person than you. You have proven yourself over and over again to be an asset to any forum and quite frankly you and David are more than welcome here. We embrace the jubilant with joy and tragic with sympathy and feel every bit as heartfelt for you and David.

    Best always,

    Matt
  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #8
    CivilMatt said:

    welcome always
    Vivian,

    I’ve never met a more compassionate person than you. You have proven yourself over and over again to be an asset to any forum and quite frankly you and David are more than welcome here. We embrace the jubilant with joy and tragic with sympathy and feel every bit as heartfelt for you and David.

    Best always,

    Matt

    Everyone has said it
    You are an inspiration to us. Your strength is great. I look every day for a posting by you and am hoping and praying for the best outcome.

    I know what it feels like to not be able to find someone or a site with the second primary cancer my husband has. Actually I could say his third cancer. First diagnosed 9 years ago is polycethmia vera, many don't think of it as a blood cancer, but it is and one that can very well turn into a form of leukemia. Then laryngeal cancer and now cancer at the cervical of the esophagus, not operable.

    Well we haven't had the problems you and your husband are experiencing, I wonder if I would have the strength, patience and compassion to do what you have done. So don't ever think you are not doing your share on this site because you are.

    Best to you and your husband

    Sharon
  • yensid683
    yensid683 Member Posts: 349
    #9
    Why should you?
    You have no need to feel different. We ALL are different. We all came to this site with questions, fears and the need to connect to others facing this awful disease. How can you think that you are not offering help to anyone?

    I've come to understand that God brings challenges to our lives, some harder than others, but he also sends us help - it's up to us to figure out what that help is and where it comes from. It is also up to us to help others and while you think you're not here to offer help to any of us, you are, just by the example of the love and devotion you have for David, you help every one of us.

    God led 'us' to you, God led you to 'us', we're here to help you.

    I've said it before and I'll say it again - grab on to our hands, we won't let go....

    P :-)
  • luvofmylif
    luvofmylif Member Posts: 344
    #10
    yensid683 said:

    Why should you?
    You have no need to feel different. We ALL are different. We all came to this site with questions, fears and the need to connect to others facing this awful disease. How can you think that you are not offering help to anyone?

    I've come to understand that God brings challenges to our lives, some harder than others, but he also sends us help - it's up to us to figure out what that help is and where it comes from. It is also up to us to help others and while you think you're not here to offer help to any of us, you are, just by the example of the love and devotion you have for David, you help every one of us.

    God led 'us' to you, God led you to 'us', we're here to help you.

    I've said it before and I'll say it again - grab on to our hands, we won't let go....

    P :-)

    I don't feel like I have
    I don't feel like I have helped others on this site, so much as I have been helped and supported. So, it's not just about about the technical knowledge about living with this particular type of cancer everyday, but also about the care and support of others. We help to lift eachother up when they need it and vice versa when we need it.

    Just keep doing what you are doing and grab support wherever you can get it. We all care about you and David. But, most of all, our heavenly Father cares. All love and care on this earth comes through him.


    Joan
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #11
    Hardest
    hardest for so many people to do is ask for help.

    that is why so many of us hang out, we have accepted the fact that one of the reasons we are still walking is so we can go help others with their fight either as a survivor or as a caregiver.

    totally i am here unconditionally to help when i can with the experience i have been thru and the knowledge i can remember.

    we are here to help, please continue to ask for anything and we will do our best to help as best we can.

    hugs

    john
  • Grandmax4
    Grandmax4 Member Posts: 723
    #12
    I'm also an alien
    my cancer was on my epiglottis..that was removed by de vinci robot along with lymph nodes November 2,2011. I don't really have a forum to be on either, I've saw a few post about epiglottis but have never had responses. I did not have any chemo or radiation, Thank God, He spared me this. When I went to my family doctor after surgery, she scared me to death by saying, how can you possibly live without your epiglottis? When I got asperation pnenomia, the local hospital was clueless on what to do, I made everyone nervous..well, 1 year out, I'm eating and drinking everything...yes, i do have a few small trials still, but, I can deal with these...
    I come to this forum because of the people, people like you and David, Katie,Phrannie,Tim,Skiffin,Matt,luv4lalacrosse,and on and on~~~~these people have been my life-line,my shoulder,my smiles and giggles and my heartbreak...please don't ever feel not welcome..we love you and are walking the walk with you and David
  • Hard12Find
    Hard12Find Member Posts: 218 Member
    #13
    Vivianne
    We love you and David and I can't think of a better place for you to be than with friends....
    Jim
  • Pumakitty
    Pumakitty Member Posts: 652
    #14
    Please
    Vivian,

    Please don't leave us. You and David are part of our family. I think what makes us so good at helping each other is that we are all different. But, what you do give to us is an unbelieveable example of strength and unconditional love.

    Still praying hard for both of you.

    Kathy
  • AJW1966
    AJW1966 Member Posts: 68
    #15
    testimony!
    Your situation may be atypical but your faith, courage and strength are an awesome testimony!
    I draw strength from all of that. My wife and i are closer now than ever before.
    Thank you!

    Alan
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #16
    Always Welcome
    I always look for your posts. You give to this board more than you can every know.

    I know what it means to be under the care of hospital staff with no experience with your condition. My worst experience was being on the operating table and having a mask placed over my mouth and nose. The problem is that there is no connection between my mouth and my lungs. My lungs are connected to the hole in my neck (stoma).

    I protested by pushing the anesthesiologist's arm away. I was rewarded by being put out. So I didn't see the panic or how my true airway was found. Obviously, I survived; so someone must have found the stoma. I've been told by other laryngectomees (on other message boards) that this is not an infrequent occurrence.

    I have started talking a lot about the stoma and neck breathing whenever I'm in for treatment. I have the anesthesiologist look into the stoma before I sign the consent. You will probably have to rattle on about David's condition with each new staff member. I know it sounds like it would be downgrading to the staff, like telling a nurse how to take a blood pressure. Don't know the real answer here.

    I hope my little troubles will serve as a distraction. Rick.
  • Billie67
    Billie67 Member Posts: 898
    #17
    ToBeGolden said:

    Always Welcome
    I always look for your posts. You give to this board more than you can every know.

    I know what it means to be under the care of hospital staff with no experience with your condition. My worst experience was being on the operating table and having a mask placed over my mouth and nose. The problem is that there is no connection between my mouth and my lungs. My lungs are connected to the hole in my neck (stoma).

    I protested by pushing the anesthesiologist's arm away. I was rewarded by being put out. So I didn't see the panic or how my true airway was found. Obviously, I survived; so someone must have found the stoma. I've been told by other laryngectomees (on other message boards) that this is not an infrequent occurrence.

    I have started talking a lot about the stoma and neck breathing whenever I'm in for treatment. I have the anesthesiologist look into the stoma before I sign the consent. You will probably have to rattle on about David's condition with each new staff member. I know it sounds like it would be downgrading to the staff, like telling a nurse how to take a blood pressure. Don't know the real answer here.

    I hope my little troubles will serve as a distraction. Rick.

    Don't give that a second thought
    I feel like you've given me plenty! The amount of love you have for David is very refreshing to me and has reminded me over and over about what's important and what is nothing to fret about. I feel like I've failed you. I wish I had answers for you or at the very least I could give you a hug and support you need. Please stay here and know that you are our family.
    Billie
  • Billie67
    Billie67 Member Posts: 898
    #18
    ToBeGolden said:

    Always Welcome
    I always look for your posts. You give to this board more than you can every know.

    I know what it means to be under the care of hospital staff with no experience with your condition. My worst experience was being on the operating table and having a mask placed over my mouth and nose. The problem is that there is no connection between my mouth and my lungs. My lungs are connected to the hole in my neck (stoma).

    I protested by pushing the anesthesiologist's arm away. I was rewarded by being put out. So I didn't see the panic or how my true airway was found. Obviously, I survived; so someone must have found the stoma. I've been told by other laryngectomees (on other message boards) that this is not an infrequent occurrence.

    I have started talking a lot about the stoma and neck breathing whenever I'm in for treatment. I have the anesthesiologist look into the stoma before I sign the consent. You will probably have to rattle on about David's condition with each new staff member. I know it sounds like it would be downgrading to the staff, like telling a nurse how to take a blood pressure. Don't know the real answer here.

    I hope my little troubles will serve as a distraction. Rick.

    Don't give that a second thought
    I feel like you've given me plenty! The amount of love you have for David is very refreshing to me and has reminded me over and over about what's important and what is nothing to fret about. I feel like I've failed you. I wish I had answers for you or at the very least I could give you a hug and support you need. Please stay here and know that you are our family.
    Billie
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #19
    THE REST OF THE GROUP STOLE MY ::::::
    Thunder, but they couldn't have said it any better. You gave me strength when I was getting panicky over my scans and dealing with the "treatable VS Cureable. Let all of us help you through your journey. The love you have for David is truly amazing, and God knows that and will reward you for that. I believe in my heart David has a much better chance just by having you by his side, as the care and copassion that you feel for your best friend is genuine.

    We are all here for you.

    Mike
  • cureitall66
    cureitall66 Member Posts: 913
    #20
    Skiffin16 said:

    Vivian, Vivian, Vivian....
    LOL, you aren't expected to give back, it's an unconditional relationship we offer you.

    You "give", by allowing us to offer you support, thoughts, prayers, and sharing...

    When those times come that you can share something, you do.

    Just concentrate on you, and your family right now..., we are OK, we want you to be OK also, along with your beloved hubby.

    You are doing your part, you help us to help you, which also helps others....

    Some of those others might just be people that may not be comfortable putting it all out there like you do...

    So they can get answers and support through your posts and replies...

    So in that sense, you are giving back, though you might not have even realized it...

    Best,
    John

    John got it all....
    He took the words right out of my mouth... You had better stay here. You know you will gain strength through this H & N forum. We are all here for you. Your NEVER alone.
  • Ingrid K
    Ingrid K Member Posts: 813
    #21
    luv4lacrosse said:

    THE REST OF THE GROUP STOLE MY ::::::
    Thunder, but they couldn't have said it any better. You gave me strength when I was getting panicky over my scans and dealing with the "treatable VS Cureable. Let all of us help you through your journey. The love you have for David is truly amazing, and God knows that and will reward you for that. I believe in my heart David has a much better chance just by having you by his side, as the care and copassion that you feel for your best friend is genuine.

    We are all here for you.

    Mike

    you have a home here
    Vivian

    DITTO what all the others have said. This is the place for you. We need you. You are one of the strongest caregivers I've ever seen on this forum. You are an inspiration to others.

    It sucks what you and David are going through. I wish we had some answers/advice for you, but as you say, David's condition is so rare, there is not much info available.
    I hope that all of us can continue to be a source of some strength for both of you.

    Keep on hanging in there.

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