My heart aches

VivianLee5689
VivianLee5689 Member Posts: 546
in Head and Neck Cancer #1
I haven't posted this to caring bridge as I want David to do it. We had a very sobering talk with our doctor today. I told you he consulted with the lead person in the field of PPCL last week and was encouraged to change his course of treatment. David has been feeling a little better and started asking me questions last night so I told him to ask the doctor. I remember I had to tell him the lump in his throat was cancer and I never want to do anything like that again. So this morning we had a list of questions. The doctor told us David would do one day of chemo 3 out of 4 weeks a month for the rest of his life unless they were able to get him into remission. Then he could have a stem cell transplant. Then he went on to say that only 1 in 10 get to remission and only 30% of those make it through the transplant. Then remission typically lasts up to two years. He told us he was sort, but the disease is so aggressive. He told us of one person who he treated and had the same chemo David has had so far. She had it six times and still didn't go into remission. She decided to go home to hospice. He told us he was sorry he couldn't give us brighter news. Of course I have been reading and what he says is consistent. I guess I was hoping the expert would be further along. It was hard to see David tear up and then say after they left so I'm going to die? I couldn't help if I hugged him and he let me. We both had a good cry. This is so hard and around the holidays. It all sucks.

Comments

  • Billie67
    Billie67 Member Posts: 898
    #2
    My heart aches too
    I'm so sorry for what both of you are going thru, it truly does suck. I am not giving up hope tho that David can get thru this if he decides this is what he wants to do. I'm sure it would be a rougher road than I could ever imagine but I have hope and prayer that he would be given the strength to give it his best shot. I respect whatever he or anyone in his position would choose to do.
    Please know that I will from this moment on be praying harder for you than ever before and trust me, you've been in my daily prayers.
    With love,
    Billie
  • ditto1
    ditto1 Member Posts: 660
    #3
    We hear you
    Vivian I guess most all of us on these sites deals with our immortality, I guess to a degree once we have been dx with some form of cancer everything changes, some for the good and some for the bad. Oh how we just want to be cured and live forever, well we know forever will not be on this earth. You referred to David and his holding on to his faith in God in your previous post, I pray you both will continue to do so. I just had my Pet scan and now I think is it back or isnt it, what if it is whats next, FEAR is a natural part of this disease. I wish I could offer words of wisdom, but I have to admit it would make me a hypocrite to tell you and David to hold on and keep your faith, when I personally have struggled with that issue under much lessor circumstances than you all are dealing with. I guess Im just trying to reach out and tell you we care and are praying for you both and we just have to hold on to what ever we can to make it one more day and enjoy that day. I have been working thru depression recently so I know its so easy to say and yet so hard to do. So forgive me if this message comes across in any way other than the intent to say we love and care for you and David and what you are going thru.
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    few words
    Vivian,

    I am sorry for you and David, this is simply heartbreaking.

    Your friend,

    Matt
  • cureitall66
    cureitall66 Member Posts: 913
    #5
    Grab onto your Faith....
    Grab the faith and know that even though these odds seem against you that there is still some hope there. Yes, you have to face the reality of what the doctor told you, but it doesn't mean that David's case can't have different or more lasting results. Maybe that stem cell transplant will be a turn around for David. Don't lose that hope.

    I know it must be difficult to soak this all up and at this time of year, but remember you two are not alone with this. There are so many people that are here/there for you. I encourage you to reach out to David with some courage and don't let him lose sight of some hope. If he doesn't have hope and faith, then he will feel like he has nothing to live for. This is important for both of you to grab a hold of right now. Your love is very strong and you have each other right now...hold onto that.

    Our prayers continue for you both.

    ~C
  • NJShore
    NJShore Member Posts: 429 Member
    #6
    More prayers..
    Vivian,

    I am sorry you had to go through yesterday, or rather what you've been through during his illness. I will be praying harder for you and David, and hold hope that the one you waited for is stronger than his disease... Some people are successful, I hope David is the star patient.
  • luvofmylif
    luvofmylif Member Posts: 344
    #7
    NJShore said:

    More prayers..
    Vivian,

    I am sorry you had to go through yesterday, or rather what you've been through during his illness. I will be praying harder for you and David, and hold hope that the one you waited for is stronger than his disease... Some people are successful, I hope David is the star patient.

    I don't think I could bear
    I don't think I could bear the pain you are going through. I know what pain I have gone through with my husbands diagnosis. Knowing someone you love may die is a gut wrenching sobering pain like no other. And, I feel guilty saying that because I am not the one with cancer. All I can say is I am sorry for all that you and David are going through . Sorry that you and David are suffering.

    Please tell him we are pulling for him and give him a big hug from your cyber friends. And, consider yourself hugged as well.

    Joan
  • Crazymom
    Crazymom Member Posts: 339 Member
    #8
    Difficult news
    My heart breaks for you. I will keep you in my prayers and ask that God give you comfort during these difficult times. Take one day at a time and get help when you need it. Ann
  • Jan Trinks
    Jan Trinks Member Posts: 477
    #9
    My heart aches too and breaks for you
    Vivian:

    So sorry to hear this news but sounds like the doctor was totally honest and upfront with y'all which is what you want even if it breaks your heart. I too remember a conversation similar. I took a bunch of Christmas goodies to the two onocologists offices that Charlie had the reg. onc. and his radiation onc. yesterday. I enjoy doing that for them and they're so appreciative. I just don't know how they deal with what they deal with day in and day out so for me it's a way of giving back because let me tell you they were so wonderful. Anyway prayers are still with y'all and will always be and remember miracles do happen but it's also good to be prepared too. I'm glad David is feeling a little better and will be earnestly praying for remission. Try to enjoy the holidays as much as you two can. God Bless!

    Jan (Basketcase)
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #10
    Jan Trinks said:

    My heart aches too and breaks for you
    Vivian:

    So sorry to hear this news but sounds like the doctor was totally honest and upfront with y'all which is what you want even if it breaks your heart. I too remember a conversation similar. I took a bunch of Christmas goodies to the two onocologists offices that Charlie had the reg. onc. and his radiation onc. yesterday. I enjoy doing that for them and they're so appreciative. I just don't know how they deal with what they deal with day in and day out so for me it's a way of giving back because let me tell you they were so wonderful. Anyway prayers are still with y'all and will always be and remember miracles do happen but it's also good to be prepared too. I'm glad David is feeling a little better and will be earnestly praying for remission. Try to enjoy the holidays as much as you two can. God Bless!

    Jan (Basketcase)

    my work sucks
    Of course today was awful then it got worse. The facility we were willing to have David go to will not take him, because he is too complex. They offered the second option which none of us liked. I had to drive home to get a laptop for David and on the way there passed the cemetery where we have plots and I totally lost it. Then I got home and got a call from work. Either I go back to work on January 21 or I have to take an unpaid leave of absence and pay them almost $1500 a month to keep my insurance. They had the option of extending my FMLA and then I would only have to pay $650 a month, but the superintendent would not agree. So I am going to look into a withdrawal from my 457 annuity to get us through so I can stay home. Then maybe I can find a better job this fall. I felt bad for the lady that was made to call me because I broke down on her too. Then my neighbor who is a nurse came over when she saw my car in the driveway took one look at me and told me to check my blood pressure. It was 175/116. Yeah a very hard day indeed.
  • Pam M
    Pam M Member Posts: 2,196
    #11
    VivianLee5689 said:

    my work sucks
    Of course today was awful then it got worse. The facility we were willing to have David go to will not take him, because he is too complex. They offered the second option which none of us liked. I had to drive home to get a laptop for David and on the way there passed the cemetery where we have plots and I totally lost it. Then I got home and got a call from work. Either I go back to work on January 21 or I have to take an unpaid leave of absence and pay them almost $1500 a month to keep my insurance. They had the option of extending my FMLA and then I would only have to pay $650 a month, but the superintendent would not agree. So I am going to look into a withdrawal from my 457 annuity to get us through so I can stay home. Then maybe I can find a better job this fall. I felt bad for the lady that was made to call me because I broke down on her too. Then my neighbor who is a nurse came over when she saw my car in the driveway took one look at me and told me to check my blood pressure. It was 175/116. Yeah a very hard day indeed.

    Oh My
    What an amazingly horrible day. I am so sorry for you guys. I hope other people find out that the superintendent had the chance to be a real human, and passed.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #12
    Pam M said:

    Oh My
    What an amazingly horrible day. I am so sorry for you guys. I hope other people find out that the superintendent had the chance to be a real human, and passed.

    Jeez...this is hard.
    I'm like Ditto, I don't want to be a hypocrit so I will just say this. Of course we as humans struggle with so many emotions, that's the beauty of the human spirit and how we are made. We also have passion and self-will. That's a doulbe edged sword at times bc WE want to take control and handle / sovle our problems, especially for our loved ones.

    This past week has been hard on me due to the national school tragedy and the fact I love kids and have five of my own, all very young. I have found myself down right angry a few times and I don't like that.

    However, it just so happens this past week our pastor spoke at church about a subject I feel I can share if you don't mind.

    He read a verse in Daniel, chapter 2. The dream of the king and the interpretation were not the message the pastor spoke on...he said he felt strongly about one verse and only a partial part of that verse, verse 28 which in part read "there is a God in heaven" ..the pastor went on to say that particular day he just felt lead by God to say that no matter what we face, no matter how dire the consequences, he even said no matter what the wisdom of man says, nothing matters because "there is a God in heaven" The pastor encouraed many that day who might be facing divorce, finanacial hardsips, children who were in rebellion, addictions to porn or drugs or acohol and even those who had just heard from a doctor not very good news...that no MATTER how bad it looks or how low we may feel it is hopeless "there is a God in heaven" and he went on to say "God can be approached, He can be found and He can still perform miracles in our lives today". He encouraged us to seek Him like never before and plead our case before Him and join together to ask for the miracle we need.

    I hope that is not too much preachy...I just found that sermon stuck in my gut and then I see your post and I just wanted to share. You know you are on so many of our prayer list. I know we all have to die at sometime in our lives, but by golly you and David have so much to live for and do it would seem to me ...so you tell David I for one am NOT going to give up or give in ...I'm going to continue to pray and seek Him for that miracle ...it's all we have left. It's all we can do....

    Best,

    Tim

    Whispered that prayer for complete healing or at least many years of remission. I will be a fool and ask if that's what it takes. I don't care what the rest of the world thinks, but I say that humbly. I even asked that David can go home for Christmas!!! :)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    VivianLee5689 said:

    my work sucks
    Of course today was awful then it got worse. The facility we were willing to have David go to will not take him, because he is too complex. They offered the second option which none of us liked. I had to drive home to get a laptop for David and on the way there passed the cemetery where we have plots and I totally lost it. Then I got home and got a call from work. Either I go back to work on January 21 or I have to take an unpaid leave of absence and pay them almost $1500 a month to keep my insurance. They had the option of extending my FMLA and then I would only have to pay $650 a month, but the superintendent would not agree. So I am going to look into a withdrawal from my 457 annuity to get us through so I can stay home. Then maybe I can find a better job this fall. I felt bad for the lady that was made to call me because I broke down on her too. Then my neighbor who is a nurse came over when she saw my car in the driveway took one look at me and told me to check my blood pressure. It was 175/116. Yeah a very hard day indeed.

    FMLA
    I think you should further investigate this....

    I don't know all of the specifics, but I believe the 12 weeks or so is a rolling twelve weeks. Plus I'm not really sure, but I imagine it's not just up to your supervisor. FMLA is available for a reason, to protect you and your job.

    Of course all of that being said, if they are forced to keep you on FMLA, there's always ways to make you miserable or get back at you.

    I truly hate hearing this news concerning your hubby.

    Just keep the faith and believe as Kent says. There's always miracles and unexplained recovers (though we know where they come from)...

    Enjoy your time while you both can and deal with the negative possibilities down the road.

    Prayers,
    John
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #14
    17
    seventeen is my favorite number next month

    my doctor told me after asking him what are my chances.... he looked at me, said "we are not people walking around with numbers on our forehead. example, i do not have an 80% tag. i believe there are two chances either we make it or we don't"

    the statement he made is one of a couple he made the day i was told "you have cancer"

    so now your wondering what the 17 has to do with the above....


    that was SEVENTEEN YEARS AGO!

    david can do it along with your continued support.

    john
  • Ingrid K
    Ingrid K Member Posts: 813
    #15
    VivianLee5689 said:

    my work sucks
    Of course today was awful then it got worse. The facility we were willing to have David go to will not take him, because he is too complex. They offered the second option which none of us liked. I had to drive home to get a laptop for David and on the way there passed the cemetery where we have plots and I totally lost it. Then I got home and got a call from work. Either I go back to work on January 21 or I have to take an unpaid leave of absence and pay them almost $1500 a month to keep my insurance. They had the option of extending my FMLA and then I would only have to pay $650 a month, but the superintendent would not agree. So I am going to look into a withdrawal from my 457 annuity to get us through so I can stay home. Then maybe I can find a better job this fall. I felt bad for the lady that was made to call me because I broke down on her too. Then my neighbor who is a nurse came over when she saw my car in the driveway took one look at me and told me to check my blood pressure. It was 175/116. Yeah a very hard day indeed.

    ESCALATE the FMLA issue

    Do not take this supervisor's opinion as the final answer. Go to your HR person if there is one, and also to the supervisor's supervisor. ESCALATE this issue. Then take care of your blood pressure. If you are already on bp meds, check with your own doc to see if you need to up the dosage as obviously this is a super stressful time.
    Maybe David can come home for the holiday after all. Wishing you the best.
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #16
    Emotions
    I go thru almost every emotion every day. I throw in the towel every day. And I find something that brings back hope. Medications play a big role. So many meds bring on fatigue. And Caffeine is a miracle drug.

    What does this have to do with David? Well be mindful how his moods change throughout the day. Perhaps one part of the day is better than another for decision making? Just a thought.

    I will also say once again that the sound of laughter from the TV, at a very low volume, to low to understand the words, helped when I was in the ICU. I had programs on that I would not normally watch. Not everyone is the same. I am not David. So what worked for me may not work for him. Nevertheless, I need to tell you my experience. Sorry for saying it more than once. Rick.
  • hwt
    hwt Member Posts: 2,328 Member
    #17
    ToBeGolden said:

    Emotions
    I go thru almost every emotion every day. I throw in the towel every day. And I find something that brings back hope. Medications play a big role. So many meds bring on fatigue. And Caffeine is a miracle drug.

    What does this have to do with David? Well be mindful how his moods change throughout the day. Perhaps one part of the day is better than another for decision making? Just a thought.

    I will also say once again that the sound of laughter from the TV, at a very low volume, to low to understand the words, helped when I was in the ICU. I had programs on that I would not normally watch. Not everyone is the same. I am not David. So what worked for me may not work for him. Nevertheless, I need to tell you my experience. Sorry for saying it more than once. Rick.

    Sorry
    Please don't give up hope. If my cousin gave up hope 8 years ago when they told him to get his affairs in order, we wouldn't be celebrating Christmas with him this year. My prayers are with you and David.

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