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Ready to pull my hair out

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am having a really hard day today.   We found out David will most likely not be a candidate for a bone marrow transplant.  We were told that one of the requirements is that you can't have another cancer within the last five years.  So his head and neck cancer disqualifies him from getting one.  I can't stand never having a plan.  David is thinking he may want to let the house to now.  So I suppose I will lose everything. 

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Just when you think things could not get much worse. I'm so sorry. I only wish I could help in some way. The money angle sucks. In a country as rich as ours, funds should not be the limiting item; but it is. Whatever, you end up doing, I'll continue to support you. I know you have supported David to the very best of your ability, and have proven yourself a better caregiver than most. Rick.

Jan Trinks's picture
Jan Trinks
Posts: 470
Joined: Apr 2009

Vivian:

 

I feel so bad for you and all you are having to deal with.  Please just know that I am praying for and David daily.  Our pastor is doing a series of sermons of faith and one of them is that even in times of despair God is with you.  I know that is so hard to visualize and feel sometimes but He is with you and David. I'm like Rick; I just wish there was something I could do or say to make things better for y'all.  Please feel free to PM me anytime.  God Bless!

 

Jan (Basketcase)

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

It is so stressful.  This is the only place people still respond even when there isn't good news.  After my post on caring bridge I can hear the crickets.  When I post feel good things I get plenty of posts.  People want to cheer and ignore the pain I feel.  Now when I share something that is so devestating to me I get nothing.  Yes I know they don't know what to say, but I can't always be encouraging. I don't have the strength.

donfoo's picture
donfoo
Posts: 1316
Joined: Dec 2012

Only those who are fighting the battle and seeing the ugly side of this war are free to share both sides of the battles. Each of us either personally is dealing with the same questions and situations to one degree or another so it is not foreign or something that offers a blank response. We think about this everyday to some extent and share this disease and all that it entails.

Please know you can draw comfort here as I know so many do understand and care deeply for all passengers on this bus.

Hold tightly to courage and hope.

DOn 

sonyk728's picture
sonyk728
Posts: 106
Joined: Jun 2011

Too much bad news is just devastating and I think you can see we are all here for you and have prayers sent your way. 

About CaringBridge, my friend's 15 year old son recently had a blood clot on his brain and they started a CaringBridge site. He had more visits in 2 weeks than I've had in 2 years. Things got better and he got to go home (had to stay at a hospital 4 hours away for 3 weeks). The mom mentioned on CaringBridge that just because he's home doesn't mean they still don't need the support - kind of like when you were hearing only crickets when people didn't know what to say. It's ok to pour your heart out here or there, or anywhere. Sometimes it is hard for people to say anything when something awful is happening. But know that many people care - you just need to ask for support :-)

 

Praying for you - you do have the strength!

 

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Caring bridge. I too have noticed people only seem interested in the good stuff. I try not to hold that against anyone, as unless they have walked a mile in our shoes, they are clueless. I completely understand the financial stress as I walked away from a career that first and foremost I loved, but was also fortunate to have made a very good living less than two weeks agoAli hope from a financial standpoint I made the right call, and am confident from the stress angle it was the right call. I worry about my wife as when I was at my worst, she was an awesome caregiver, and now she is also the breadwinner. Being a caregiver is the toughest job in the world and I will always hold them in a special place in my heart. have are one of the most poised and courageous individuals I have ever had the pleasure of communicating with. Please know we ALL hold you in the highest regard.

Respectfully

Mike

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

So how many of us have caring bridge pages?  Anyone who wouldn't mind me reading yours please pm me if you don't want to post it here.  

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

So how many of us have caring bridge pages?  Anyone who wouldn't mind me reading yours please pm me if you don't want to post it here.  

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Ok I'm with you, when are you going to hear something a little more positive!
I've been unable to get online recently, well it's been off and on because we've had some sort of power outage due to an accident in our neighborhood. Anyway, I finally am able to get on and I really hoped to find something happier from you. Is there anyway that they can get around his H&N cancer to make the BMT happen? I have heard of instances where it happens.

Please know that just because you haven't heard from me doesn't mean that you haven't constantly been in my prayers. I wish California wasn't so far from you. If anyone here on our CSN family is close to you it is my hope that they will surprise you with a visit. Anyone listening??????

How is David feeling by the way? Is he on a break from chemo at the moment or is he in treatment?

Keep your chin up my friend, you are doing an amazing job and I still believe!!!

Billie

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Vivian

I think it's very true that most people really don't know what to say.  They simply don't have the words.  Unfortunately, they don't realize that all you really need to hear is that they are thinking of you both.  They don't have to say much more than that.

And sometimes, even though we have all been thru the cancer that has changed our lives forever, even we don't know what to say, but just know that we all think of you both often and in the meantime we continue to pray for a miracle.

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Vivian,

i am so sorry that you keep getting thrown these curve balls. 

And I get you on the caring bridge responses.. how many times have you written, and then someone calls you, tells you they love the site, tells you they read it everyday, and then asks you questions that are clearly answered in a recent post...

I have learned, they hear what they want to hear.. And people who have not gone through what we have, don't necessarily get it and  are in big denial... I think more of it as a journal for me... If they get something good out of it great, but I have the data... Dated.. If they don't read it or listen to what I am saying.. Me repeating it isn't going to help Dan, I don't. I find excuses to hang up the phone.

oh and I love the ones who look for information that's not on the website... So that they can be a key source of info for others..  People are good at the core.. But we all carry baggage.. And this just isn't a good time to see it.

hope you start getting some good breaks.. You so deserve it.

Kari

CivilMatt's picture
CivilMatt
Posts: 3067
Joined: May 2012

Vivian,

 

I am sorry to hear there is a road block to David’s treatment. I wished they had mentioned the 5 year limitations earlier or not made the offer at all.  This definitely throws a wrench in everything, but it doesn’t deter me from hoping for a better plan for both of you.

 

Best,

 

Matt

katenorwood
Posts: 1853
Joined: May 2012

Vivian,

I want you to know and hold tight to you're never alone !  Is this a for sure thing David can't receive the transplant ?  Do you guys have a coordinator.....or someone who could fight for you on this issue ?  I am praying so hard for you two.  The house issue plainly sucks....but saying this would it be the worst case scenario to let it go back ?  It would defineately take major stress off of you.  I was told by my parents always that home is where you hang your hat.  Meaning that.....life throws us curve balls, we do our best and keep putting one foot in front of the other.  You are such an inspiration....and girl the love that radiates out of your written words humbles me.  Know my thoughts for a miracle and love are sent to yourself and David.   Katie

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

I don't know why sometimes things just have to be the way they are.... It is so unreasonable, unbelieveble, un-something...We ask ouselves why do things sometimes just go down, down, down... I don't know the purpose of that, truly. I encourage myself that maybe God knows what he's doing and the reward will come later. Because from every challenge or struggle we learn something. I know a woman in our town, she had 4 grown children. Last year 3 of them died in a car accident (drunk driver hit them)... One girl was 3 months pregnant at the time of accident. I still don't see the purpose of them dying... Still can't see the God's plan in all this... I just don't understand. How can a mother bear this... losing 3 of her children...

So, I know, Vivian, that you feel helpless right now. But you ARE strong. Strength is coming from every word you write. You have family beside you, your children too... Try to find strength in that. Just take one day at a time. But, you know, I'm still praying for a miracle for David's health. And I'm praying for you and your strength and peace. You have us here and we will always be listening. Because we're all here with one reason - fighting for life.

I probably said nothing encouraging right now... but please, do know, that I'm virtually holding your hand... You'll get thru this and you WILL be happy again! After rain there is ALWAYS a sun! Just believe that!!

And all those prayers coming your way... they just MUST and WILL help!!

Take care!

V.

jim and i's picture
jim and i
Posts: 1666
Joined: May 2011

Vivian, God does not plan for us to get cancer or for drunk drivers to kill the innocent, humans have free will and chose to cause these things through their actions oor others actions. God can however make something good out of tragedy. More importantly, God still does miracles so keep praying and bellieving. Our God is a loving God.

Debbie

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

I am so sorry that you are dealing with everything.  I understand how your feel about being lonely,  Mom and I feel that same when we are dealing with dad's issues.  You can always tell us everything the good and the bad.  Please stay strong and try to take care of yourself to.  Remember we are hear for you.

 

Much love and prayers.

 

Kathy

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

They should have told you from the start that his H/N cancer disqualifies him from getting a transplant. I'm so sorry. I read your caring bridge page updates and think of you and David often. I just wish there was something I could do to help.

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

that they might make an exception for David....that tho HNC is another cancer, it has nothing to do with the blood...like the liver, or pancreas...an organ that deals with blood.  HNC doesn't affect the marrow.  I'm praying for it!  I wonder why they didn't tell you this up front so you could be working on it?

As for the house, I truly believe that there are times when what we perceive to be the very worst thing, becomes the very best thing in retrospect.  That God is taking care of us better than we can take care of ourselves.  Hold on to that thought....

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Well David keeps telling me that the doctor had told us he had a slim chance of making it to next Christmas.  He told us initially the chance of David making it to transplant was slim.  Maybe he was trying to tell us, but we were just grasping for a chance at the miracle.  It is hard to believe that my husband isn't going to live much longer.  I hope if this is the case that God doesn't allow him to suffer long.  I know he loves me and probably enjoys spending so much time with me, but his quality of life sucks right now.  We aren't able to go into public with the exception of going to treatments and doctor's appointments.  He isn't able to shower every day because he knows it is such a challenge to get him ready to get in the shower.  He finds it difficult to even brush his teeth daily.  Not being able to use the one leg and being weak from so much weight loss makes everything harder.  He misses being able to sleep with me and I am sure he wishes we could kiss just as I do.  His relationship with God is so strong and I don't know how he would cope without that.  I appreciate all my friends here who help me with my faith and make me feel someone cares about what is happening to me as well.  I find myself upset sometimes that it doesn't seem like people care about me.  They all worry about David and yes he is dying, but I feel like a piece of me is dying too.

ditto1
Posts: 634
Joined: Mar 2012

some times we do highlite the sick person in the situation they are going thru.   As others have said and I told you in another post, we want you to know we do care about you.  Sadly we cannot change your circumstances as we have had no control on many of the sad results of our fellow warriors recently loosing 2 of them..  We share our hands and hearts with our words in this day and age where we are both blessed to reach out like this due to technology, but the down side we cannot hold your hand , hug you tight in real time, but be assurred you and David have all our hearts and prayers coming your way.   Again I like others have said  I do not have the answers for the trials and tribulations on this earth, God assurred us we would go thru them, but he also said he would be there for us and I believe he will be there for you and David.  And most importantly David believes. 

donfoo's picture
donfoo
Posts: 1316
Joined: Dec 2012

Hi Vivian,

This has likely already been mentioned but maybe you can join a local cancer support group. It seems like it would help you cope and also just get a needed short break from time to time.

Don

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

We care for you! I often think how could we all make this easier for you. If this is true that David has a slim chance to win this desease then we all have to focus mostly on you. Because it is true that YOU are the one who stays in the end. YOU will have to go on. YOU will have to continue to live! But trust me on one thing - you WILL live again. You WILL feel free again. You're focusing completely on David now and on his needs. You're doing everything to make HIM feel better. You're using your entire strength exclusively for him. It is exhausting, because no matter how much you love him and no matter how much you're grasping for at least a slim chance or a miracle, it is taking energy away from you. No matter how weird this might sound, you will feel relieved when all this is over. You don't want him to hurt, but you don't want to hurt either. Cancer is a terrible desease when you know there is not much chance for living...When my grandmother found our about her terminal stage of cancer it was terrible for all of us. It took a whole year before she passed away but the feeling was like we were all dying slowly. Our minds were exhausted, dead in times.... When she passed, we had no tears anymore. I felt that weird freedom and relief that she is in a better place without pain now! No matter how much we missed her, it was better for all of us that it just ended. Being in this twilight zone is no walk in the park. It is horrible torture for mind and body. So, Vivian, please forgive me on my long posts, but please do know that I wish strongly for you to be strong thru all this!

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

It is normal for you to feel down, depressed: whatever term you want to apply. There is no point for feeling guilty about negative emotions. Embrace your negative emotions, there are also real. Then I pray that there will still be time to let a few positive emotions in. The positive and negative can exist side by side. Strange. Rick.

cureitall66's picture
cureitall66
Posts: 874
Joined: Aug 2012

Vivian,

I'm sorry that you and David are having a tough time and I know how stressful this is for you. You feel helpless at times, I know. But, you are never alone even if there is just you and David. God is always beside you because you hold your faith. We all may be many miles away from you, but there isn't a day we don't think about what you and David are going through and how much we wish we could be there to help you through this. I know you are a strong person...and I know you can get through this. Try not to look ahead so far and look at what is before you right now....Love what you have.

You know you can email me anytime and vent all you want.....I will be there to take it and help you the best I can.

God Bless,

Cris

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Vivian, 

so glad the sun came out! You are way ahead of me today, I am still into washing bedding .. Seems while we were in Philly for 6 weeks, my almost 30somethings had a holiday here at home.. And every bed was a mess! So I started at the mattresses and its spring cleaning time.

But you're ready to watch the game too!  

And even on a good day, my thoughts are with you, my prayers, and i get it.. You are not alone, you are in all our hearts too.. And we get you.

go enjoy the sunny day with your handsome groom..:)

Kari

ps - you are making me want to toss out the coke in my fridge!

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