two long years become longer

coping in CA
coping in CA Member Posts: 20
in Caregivers #1
My first time here. My wife (been together 6 years, married almost 3) was dx with lung cancer 4/2009 at 47, less than a year after getting our son at 6 months who was premature with a lot of medical issues) Since then: lower left lobe removed, 6 months of treacherous chemo, on vaccine trial for about 9 months until 9 lesions found in brain treated with gamma knife, then went on chemo and avastin with unpleasant side affects. Now has cancer cells in cerebral spine fluid, has a shunt and get chemo through it. Also had 10 rounds of whole head radiation. More recently in the hospital again for some type of infection that no one can pinpoint, but there were white cells in the csf which is not good. Antibiotics seemed to help. However, she was just too weak to be safe at home (had fallen several times). She is currently in a rehab (been 2+ weeks) and after her 2nd interthecal treatment this time with 2 chemo drugs, she is weaker, has tremors again and is not very responsive. I don't think she even remembers that we (son, now 3 and I,46) were there yesterday. Dr. at rehab says at least another month while on the chemo. Also takes Tarceva.

And that is the short version. I am exhausted. It is a 1/2 hour drive to visit, but a nice facility. I have had to be her advocate all the way to see that she gets what she needs.

She does not express herself and I feel more disconnected from her that ever. I don't know what to expect - will she get through this, has her brain changed her for good? I feel so alone even when I am with her. She never tells me what she needs and does not really support me. I guess at this point I have to stop expecting that. I do talk to a therapist but it seems that the days are more and more difficult, especially dealing with an active 3 year old - who really is the light of my life.

Today I am very sad. Just dealing with each minute.

Thanks for reading. Writing helps.

Coping

Comments

  • Elizabeth15
    Elizabeth15 Member Posts: 37
    #2
    Listening
    We are listening...just let it out. Your life is changing faster than you can keep up with it. It is extremely frustrating to lose so much so quickly...we have all been there. What was so good, so routine, so matter of fact turns upside down and inside out. Being here and just saying it hopefully will let of some steam. I have never been diagnosed with cancer but husband was. I know he changed before my very eyes...he seemed to turn inward, never unkind never hurtful...but he was different...he was on a survival course and I realized he needed all his emotional and physical energy to try and just live...nothing was ever the same again after we heard his doctor say...Bob you have cancer...our old world and life ended that day and we entered an all new territory. You have been on this journey for a very long time and coupled with a baby is almost more than most people could handle...yet you have...you have every right to be sad, things are out of control...you are caring for three people right now I really don't even know how you do it.

    You are correct writing helps....when my husband was diagnosed I bought a journal and wrote all the time...I don't know if you have time to write but it did help me incredibly. There are a lot of people on this network who have had the same feelings, sadness, hurt and experiences as you. I have read manynof their thoughts and words...it has helped me so much...Being here made me realize I was not alone....You are not alone either...you found this forum for a reason...use it. I am so sorry you have to go through this. Elizabeth
  • coping in CA
    coping in CA Member Posts: 20
    #3
    Elizabeth15 said:

    Listening
    We are listening...just let it out. Your life is changing faster than you can keep up with it. It is extremely frustrating to lose so much so quickly...we have all been there. What was so good, so routine, so matter of fact turns upside down and inside out. Being here and just saying it hopefully will let of some steam. I have never been diagnosed with cancer but husband was. I know he changed before my very eyes...he seemed to turn inward, never unkind never hurtful...but he was different...he was on a survival course and I realized he needed all his emotional and physical energy to try and just live...nothing was ever the same again after we heard his doctor say...Bob you have cancer...our old world and life ended that day and we entered an all new territory. You have been on this journey for a very long time and coupled with a baby is almost more than most people could handle...yet you have...you have every right to be sad, things are out of control...you are caring for three people right now I really don't even know how you do it.

    You are correct writing helps....when my husband was diagnosed I bought a journal and wrote all the time...I don't know if you have time to write but it did help me incredibly. There are a lot of people on this network who have had the same feelings, sadness, hurt and experiences as you. I have read manynof their thoughts and words...it has helped me so much...Being here made me realize I was not alone....You are not alone either...you found this forum for a reason...use it. I am so sorry you have to go through this. Elizabeth

    Thank you so much,
    Thank you so much, Elizabeth. I have read and re-read your response it has been that helpful. She is now being admitted into the hospital for having lots of confusion. I just want answers - is it the treatments, swelling in the brain from treatment, steroids? This is the second interthecal treatment and second time in the hospital for this. Hopefully this forum will help me to stay sane.

    All the best,

    Shari
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #4
    Sorry
    I am so sorry that you are all going through this. It is so hard to watch a loved one so sick. We just want to fix them but know we can't. You are right that you just have to deal with this minute by minute. On good days it might even be an hour at a time. You life has turned upside down and it's just not fair. I can only tell you that you are not alone. Many here have experienced what you are. Come here for support and just to vent when you need to do so. Hang in there. Fay
  • karenbeth
    karenbeth Member Posts: 194
    #5
    coping in CA said:

    Thank you so much,
    Thank you so much, Elizabeth. I have read and re-read your response it has been that helpful. She is now being admitted into the hospital for having lots of confusion. I just want answers - is it the treatments, swelling in the brain from treatment, steroids? This is the second interthecal treatment and second time in the hospital for this. Hopefully this forum will help me to stay sane.

    All the best,

    Shari

    coping
    I started to reply to your post yesterday but then couldn't think of any better response than Elizabeth's. I'm sorry your wife is being admitted to the hospital, but I hope you get the answers you need. Come here as often as you need to; I know for myself it really did (and does) help me stay sane.

    Karen
  • Elizabeth15
    Elizabeth15 Member Posts: 37
    #6
    coping in CA said:

    Thank you so much,
    Thank you so much, Elizabeth. I have read and re-read your response it has been that helpful. She is now being admitted into the hospital for having lots of confusion. I just want answers - is it the treatments, swelling in the brain from treatment, steroids? This is the second interthecal treatment and second time in the hospital for this. Hopefully this forum will help me to stay sane.

    All the best,

    Shari

    How Are You?
    Dear Shari, How are you doing? Have you been able to get some answers you had questions about? I read where your wife was admitted to hospital yesterday...has it helped her? Is she comfortable? Today is Mother's Day...a tough day for a Dad and son to have Mom in the hospital so ill. Your wife is in a safe place where there are experts to care for her...I am hoping this gives you some comfort and also some space to simply breath and let yourself relax just a bit. Reading your words I am sure you place yourself on the back burner and all else gets taken care of long before you give yourself a break...there are those who always say you have to take care of yourself you know...but those of us who have been in your position know that is next to impossible...I do hope with your wife in the hospital it will simply relieve you a bit. Remember you are sane, you are okay...it is cancer that is insane...it is a thief...it robs us of the world we were so comfortable in...the world we made with our loved one to cope with everyday problems and stresses...now that world we worked on, we planned and mapped out has been pulled out from under us and cancer seems to call the shots...cancer is the insane intrusion in our lives...you, me, not any of us is insane...we are okay...we are just trying to cope with everything...that to me is quite normal...we are simply putting all our physical and mental resources together to deal with all this stuff that is happening...implore simply exhausted...with no end in sight...that is also very scary...yet here you are trying to make sense of all of this with a young child...I am proud of you...you are very very special...Remember write if you get a chance...off load here...we all have bigger shoulders than you know let us be your sounding board. Elizabeth
  • yv1214
    yv1214 Member Posts: 72
    #7
    grandmafay said:

    Sorry
    I am so sorry that you are all going through this. It is so hard to watch a loved one so sick. We just want to fix them but know we can't. You are right that you just have to deal with this minute by minute. On good days it might even be an hour at a time. You life has turned upside down and it's just not fair. I can only tell you that you are not alone. Many here have experienced what you are. Come here for support and just to vent when you need to do so. Hang in there. Fay

    Everyone here is so nice and supportive....
    Shari, I am glad to know you have a good network. Plus here everyone is pretty much going through something similar situation so we get it.

    If I can help just by letting you vent, do not hesitate to reach out I am here for you.

    Yessy

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